original paper evaluation of the effectiveness of canine assisted therapy as a complementary method of rehabilitation in disabled children doi: https://doi.org/ . /pq. . iwona grabowska, bożena ostrowska department of occupational therapy, university school of physical education in wrocław, wrocław, poland abstract introduction. the aim of the study was to evaluate the effectiveness of canine assisted therapy as a complementary method of rehabilitation in children with developmental disabilities. methods. overall, children with a disability, of both sexes, aged – years took part in the study. the diagnostic survey was used as a method, the research tool was a survey that consisted of questions. the survey was to be filled in by the parents. results. canine assisted therapy turned out the most effective one in attention-focussing ( %), developing mobility ( %) and motor function ( %), improving downtime ( %), achieving balance and coordination ( %), and finding a way to show affection ( %). therapeutic benefits were also observed in the children’s emotional and social sphere. conclusions. canine assisted therapy has a major impact on improving balance, coordination, and motor skills. the close- ness of the animal makes children quiet and relaxed. canine assisted therapy contributes to the reduction of aggressive be- haviour and increases awareness. it is an effective and recommendable complementary method of rehabilitation for children with intellectual and motor disorders. key words: autism, cerebral palsy, developmental disabilities, animal assisted therapy, canine assisted therapy correspondence address: iwona grabowska, department of occupational therapy, university school of physical education in wrocław, al. i.j. paderewskiego , - wrocław, poland, e-mail: @student.awf.wroc.pl received: . . accepted: . . citation: grabowska i, ostrowska b. evaluation of the effectiveness of canine assisted therapy as a complementary method of rehabilitation in disabled children. physiotherapy quarterly. ; ( ): – ; doi: https://doi.org/ . /pq. . . physiotherapy quarterly (formerly fizjoterapia) , ( ), – © university school of physical education in wrocław introduction nowadays, an appropriately developed rehabilitation pro- gramme plays a leading role in the stimulation of the psycho- motor development of children with disabilities. teams of spe- cialists, including physicians, physiotherapists, psychologists, speech therapists, try to apply the latest methods of work and therapeutic procedures which would significantly im- prove the functional condition of their patients. such innova- tive complementary forms of rehabilitation for children with numerous developmental deficits include canine assisted therapy, which by creating a relationship with a dog combines play, education, and revalidation. analysing the situation of disabled children in the society, we can notice that they are often discriminated against be- cause of ‘being different,’ and the surrounding environment treats them with prejudice as disabilities arouse reluctance and disgust. yet, in accordance with the convention on the rights of the child adopted by the united nations, ‘a men- tally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the commu- nity’ [ , art. ]. unfortunately, often people focus on children’s deficits and judge them by their disabilities, failing to consider their actual skills. an additional negative aspect is the current quick pace of life and the tendency to focus on material val- ues. this causes loneliness and rejection of dependent chil- dren, as their parents are too tired with their daily duties to pay attention to their disabled children and deepen their emo- tional relationship with them. here we can consider whether there is an association be- tween canine assisted therapy and disability. the answer is obvious. closeness with a dog can work miracles. a dog is a creature who does not laugh at anybody, who does not judge, but accepts; it does not require or expect, but it gives; it does not forbid or order around, but motivates. most of all, however, a dog does not have any conditions – it loves unconditionally, spontaneously showing its feelings. a dog becomes a therapist, a teacher, a guardian, and a hero for the child, while the task of adults is only to ensure better condi- tions for development adjusted to the child’s possibilities, needs, and interests [ ]. canine assisted therapy is one of the types of animal as- sisted therapy, together with equine assisted therapy (therapy with the participation of horses), feline assisted therapy (ther- apy with the participation of cats), as well as dolphin therapy or pet therapy (therapy involving alpacas, rabbits, hamsters, or birds). with reference to canine assisted therapy, the fol- lowing terms are also applied: dog therapy, kynotherapy, canistherapy, and contact therapy, but they are all synony- mous – they mean working with a dog and share the same goal [ ]. from a wider perspective, canine assisted therapy is ‘treat- ment through contact with a dog – kind, friendly, loyal, com- mitted, soft and fluffy’ [ , p. ]. the definition of canine as- sisted therapy formally approved by the przyjaciel foundation assumes that it is a contract therapy with the participation of a dog involving multi-profile improvement of children and adults. it is a type of work complementing broadly under- stood rehabilitation and it cannot be the only form of therapy. it constitutes complementation of all therapeutic impacts, in particular in the case of developmentally challenged chil- dren. in healthy people, it is an element of educational im- pacts [ ]. another definition, suggested by the polish kyno- i. grabowska, b. ostrowska canine assisted therapy in children rehabilitation physiotherapy quarterly (formerly fizjoterapia) , ( ) physiotherapyquarterly.pl therapeutic society, says that ‘kynotherapy is a method that enhances effectiveness of personality development, educa- tion, and rehabilitation, in which an appropriately selected and trained dog is a motivator; it is carried out by a qualified kynotherapist’ [ ]. the purpose of canine assisted therapy is to complement a traditional rehabilitation programme, and thanks to a large number of available therapeutic plans, it is addressed to a large group of patients. among the recipients of canine assisted therapy there can be children with intellectual and physical disabilities of various degrees, autism spectrum disorders, attention deficit hyperactivity disorder (adhd), down syn- drome, cerebral palsy, epilepsy, speech disorders; people with complications of past injuries and diseases, with dam- ages to the hearing or sight organ; people who feel lonely; elderly people; those suffering from mental illnesses and so- cially maladjusted. the only contraindications to applying such therapy are allergic reactions to canine saliva, dander, or epidermis [ , , ]. the main idea of canine assisted therapy is to develop and implement a programme of classes adjusted to the in- dividual possibilities and needs of patients. the methodology is arranged in cooperation with a physician and physiother- apist and it is aimed at achieving specific therapeutic goals, among which there are mental, physical, educational, and motivational ones. summarizing, canine assisted therapy helps eliminate mo- tor dysfunctions, impacts mental development, shapes the psyche, and improves social skills. a factor intensely moti- vating during the process is a dog, whose closeness leads a child to numerous beneficial behaviours and emotions. overcoming difficulties, crossing one’s barriers, as well as reducing aggression, anxiety, and stress are often the only purposes, but the therapy constitutes a great step forward in establishing a child’s contact with the world [ ]. canine assisted therapy as a method supporting reha- bilitation both in poland and in the world still remains at the developmental stage. in current literature, there is still little information concerning the effectiveness of dog therapy in the rehabilitation of children with various disabilities. available publications are mostly illustrative works presenting the idea of therapy with the participation of a dog – the possibilities, principles, and methods of its application – or the results of studies based on experience and authors’ own observations. reliable literature involving objective scientific research which would present specific results of the therapy in various spheres of functioning of children with intellectual or physical dis- abilities is still missing [ , ]. also, there are no publications which would assess the therapeutic effectiveness of canine assisted therapy from the perspective of parents, whose opin- ion is the most measurable here. spending most time with their children during the day, they are able to see even the slightest changes in their functioning or behaviours, which may be not visible to therapists or educators. the objective of this article was to evaluate the effective- ness of canine assisted therapy as a complementary meth- od in the rehabilitation process of children aged – with developmental disabilities. to study the problem, the fol- lowing research questions were asked: . does canine assisted therapy affect improvement of balance, coordination, and motor skills? . do classes with the participation of a dog result in down- time improvement? . does canine assisted therapy contribute to enhancing cause and effect thinking? . does canine assisted therapy reduce aggressive be- haviours? . is canine assisted therapy, as a complementary method in the rehabilitation process, worth recommending? subjects and methods the study was conducted in the kindergarten of the spe- cial educational centre in wroclaw after obtaining consent of the head of the institution. it involved a group of children with disabilities ( boys and girls) aged – years. all children were under constant care of physicians and physio- therapists, and they participated in canine assisted therapy classes, which complemented the traditional rehabilitation process. a mild degree of disability occurred in children, moderate in children, and significant in children. the children participating in canine assisted therapy were diag- nosed with autism ( ), speech disorders ( ), intellectual dis- ability ( ), cerebral palsy ( ), and adhd ( ). most subjects ( ) took part in canine assisted therapy with the participation of a dog once a week. most often, the children were involved in group canine assisted therapy ( ), and the classes lasted minutes ( ). the period of the therapy was diverse and equalled – years in the case of children, – years in children, and less than a year in children (tables , ). as a research method, a diagnostic survey was also used, while a research tool was the authors’ survey consisting of questions, filled in by parents of the children with disabili- ties. owing to the lack of standardized questionnaires eval- uating the effectiveness of canine assisted therapy in the re- habilitation process, a survey created on the basis of other authors’ surveys available online was used [ , ]. the first part of the survey concerned information about the participants (sex, cause for participating in canine assisted therapy, time, form and frequency of classes, the diagnosed degree of disability, behaviour during therapy). in the second part, parents were to evaluate the results of canine assisted therapy by providing answers to questions referring to im- provement in terms of motor functioning, muscle tension, table . characteristics of study participants number of study group number of participants gender disability type degree of disability female and male autism moderate and significant female and male speech disorder mild, moderate, and significant female and male cerebral palsy mild, moderate, and significant female and male intellectual disability moderate and significant female and male attention deficit hyperactivity disorder (adhd) mild, moderate, and significant i. grabowska, b. ostrowska canine assisted therapy in children rehabilitation physiotherapy quarterly (formerly fizjoterapia) , ( ) physiotherapyquarterly.pl table . description of study groups number of study group patients’ occupational needs activities with canine assisted therapy expected therapy results (autism) improvement in interpersonal relationship with friends, parents, and teachers, development of the emotional sphere pointing the body parts on oneself and on the dog, playing in front of the mirror – watching own silhouette and that of the dog, listening to the dog’s heartbeat, blowing on the dog’s fur, searching for a hidden child by the dog, throwing toys to the dog improvement of attention, emotional condition, expressing emotions and feelings, social skills (speech disorder) speech development, learning new words, increasing the motivation of the child to communicate with other people collecting dog’s toys (give me a ball), searching for items near the dog, noticing opposites, verbal and pictorial stories improvement in verbal communication (words) (cerebral palsy) increasing active movements, using both sides of the body, improvement of the quality of life by being more independent mimicking the way the dog moves (walking, lying, sitting, crawling, serving), throwing the ball to the dog, stroking the dog’s hair, feeding the dog with a teaspoon, combing the dog, exercise with clothes (tying a scarf, pulling socks) improvement of locomotor skills, balance and coordination, motor functioning; reduction of muscle tension (intellectual disorder) development of visual and visuospatial perception, improvement of depth perception listening to stories, cartoons, attempts to combine pictures into a logical whole, segregating dog’s toys and other objects, exercising: fastening a dog leash – ‘we go outside,’ putting dog’s food in a bowl – eating time, turning off the light – the dog goes to sleep, pointing at animals on pictures based on the heard name, matching pairs of the same pictures improvement of cause and effect thinking (attention deficit hyper- activity disorder, (adhd) reduction in fear, anxiety, and stress, relaxation of the body, improvement of attention blowing water in a dog’s bowl, imitating dog’s panting, listening to the sound of a breathing or sleeping dog, finding hidden objects, using games that require attention and concentration, e.g. building by pattern, inserting different sizes of delicacies into openings in a suitable size box reduction in the level of aggression, improvement of downtime balance and coordination, cause and effect thinking, expres- sion of emotions and feelings, level of aggression, downtime, and verbal communication. the last part of the survey aimed at establishing if thanks to canine assisted therapy the chil- dren willingly participated in the rehabilitation process, if their progress was satisfying for parents and if canine assisted therapy as a method supporting traditional rehabilitation was worth attention and recommendation. the study results are presented in tables. statistical analysis the statistical analysis of the data was performed with the statistica software. the chi-squared test allowed infer- ential statistical analysis. here, the results were considered statistically significant at p . , showing statistical de- pendence. ethical approval the research related to human use has been complied with all the relevant national regulations and institutional policies, has followed the tenets of the declaration of helsinki, and has been approved by the authors’ institutional review board or an equivalent committee. informed consent informed consent has been obtained from the legal guard- ians of all individuals included in this study. results in the second part of the survey, questions aimed at ob- taining information about the results of canine assisted therapy the physical, intellectual, and emotional sphere. improvement in terms of locomotor possibilities due to canine assisted therapy was observed by the parents of % of participants, while the remaining % did not know whether there was any improvement in their children’s manner of movement (table ). in % of the studied participants, canine assisted ther- apy contributed to greater downtime in everyday life, in % there was no improvement, and % of parents said that they did not know whether downtime improvement was caused by canine assisted therapy (table ). i. grabowska, b. ostrowska canine assisted therapy in children rehabilitation physiotherapy quarterly (formerly fizjoterapia) , ( ) physiotherapyquarterly.pl table . impact of canine assisted therapy on locomotor skills improvement disability type definitely yes rather yes i don’t know autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . chi-squared test = . ; p = . table . impact of canine assisted therapy on downtime improvement disability type definitely yes rather yes i don’t know rather not autism speech disorder cerebral palsy intellectual disability attention deficit hyper activity disorder (adhd) total (n) total (%) . . . . chi-squared test = . ; p = . table . impact of canine assisted therapy on verbal communication (words) improvement disability type definitely yes rather yes i don’t know rather not definitely not autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . . . chi-squared test = . ; p = . table . impact of canine assisted therapy on balance and coordination improvement disability type definitely yes rather yes i don’t know autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . chi-squared test = . ; p = . i. grabowska, b. ostrowska canine assisted therapy in children rehabilitation physiotherapy quarterly (formerly fizjoterapia) , ( ) physiotherapyquarterly.pl improvement in verbal communication occurred in % of participants. in %, it was not certain whether improve- ment took place, while % of parents said that there were no changes (table ). noticeable improvement in balance and coordination was reported in % of children participating in canine assisted therapy, while % of parents were not certain whether ca- nine assisted therapy contributed to improvement in stability and balance (table ). a positive impact on developing attention to currently per- formed tasks was observed in % of participants; in % there was no certainty concerning improvement (table ). the impact of canine assisted therapy on improvement in the emotional functioning was observed in % of children by their parents, no improvement was reported by %, and % of the respondents were not able to say whether the change in their child’s temper was caused by canine assisted therapy (table ). visible improvement in the motor functioning was observed in % of participants, while in % of children no improve- ment was observed, and % of parents were not certain whether canine assisted therapy contributed to motor func- tioning improvement (table ). reduction in the increased muscle tension in upper and lower limbs was observed in % of children participating in canine assisted therapy, no improvement was declared by % of parents, while in % it was not certain whether ca- nine assisted therapy affected regulation of muscle tension (table ). improvement of one of the basic forms of thinking (cause and effect thinking) as expressed in the dependencies be- tween the participants’ actions and dogs’ behaviours, e.g. table . impact of canine assisted therapy on attention improvement disability type definitely yes rather yes i don’t know autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . chi-squared test = . ; p = . table . impact of canine assisted therapy on the emotional condition improvement disability type definitely yes rather yes i don’t know rather not autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . . chi-squared test = . ; p = . table . impact of canine assisted therapy on motor functioning improvement disability type definitely yes rather yes i don’t know rather not autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . . chi-squared test = . ; p = . i. grabowska, b. ostrowska canine assisted therapy in children rehabilitation physiotherapy quarterly (formerly fizjoterapia) , ( ) physiotherapyquarterly.pl table . impact of canine assisted therapy on muscle tension reduction disability type definitely yes rather yes i don’t know rather not definitely not autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . . . chi-squared test = . ; p = . table . impact of canine assisted therapy on cause and effect thinking improvement disability type definitely yes rather yes i don’t know rather not autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . . chi-squared test = . ; p = . table . impact of canine assisted therapy on improvement in expressing emotions and feelings disability type definitely yes rather yes i don’t know autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . chi-squared test = . ; p = . reaching out a hand makes the dog approach, putting on a collar means going for a walk, was declared by % of par- ents, % did not observe any improvement in this aspect, and % of the respondents could not tell (table ). a positive impact of canine assisted therapy on learning to better express one’s feelings and emotions was observed by % of parents, while the remaining % could not clearly tell whether the change in terms of expressing one- self was caused by canine assisted therapy (table ). reduction in the level of aggression was observed in % of participants, in % of cases the level of excessive anger did not change, and % of parents responded that they did not know whether a smaller frequency of aggressive behaviour resulted from canine assisted therapy (table ). improvement in terms of social skills was observed by % of parents, no results were noted by % of parents, while uncertainty in terms of improvement was stated by % of parents (table ). the last series of questions in the survey aimed at sum- marizing and expressing parents’ opinions on the effective- ness of canine assisted therapy as an element of the entire improvement programme for children. in all children (n = ) participating in the studies, canine assisted therapy caused a change in the attitude to a long-term rehabilitation process and an increase in the will to actively participate in it. satis- faction from the results brought by canine assisted therapy in each sphere of the children’s life – physical, intellectual, and emotional – as well as recommendation of canine as- sisted therapy as a method complementing the rehabilita- tion process for children with disabilities were declared by all parents of the studied children (n = ) (tables – ). i. grabowska, b. ostrowska canine assisted therapy in children rehabilitation physiotherapy quarterly (formerly fizjoterapia) , ( ) physiotherapyquarterly.pl table . increase of the children’s willingness to participate in rehabilitation disability type definitely yes rather yes autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . chi-squared test = . ; p = . table . satisfaction from the results of canine assisted therapy disability type definitely yes rather yes autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . chi-squared test = . ; p = . table . recommendation of canine assisted therapy disability type definitely yes rather yes autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . chi-squared test = . ; p = . table . impact of canine assisted therapy on aggression reduction disability type definitely yes rather yes i don’t know rather not definitely not autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . . . chi-squared test = . ; p = . table . impact of canine assisted therapy on improvement in the level of social skills disability type definitely yes rather yes i don’t know rather not autism speech disorder cerebral palsy intellectual disability attention deficit hyperactivity disorder (adhd) total (n) total (%) . . . . chi-squared test = . ; p = . i. grabowska, b. ostrowska canine assisted therapy in children rehabilitation physiotherapy quarterly (formerly fizjoterapia) , ( ) physiotherapyquarterly.pl discussion animal assisted therapy has not become very popular in poland, and the awareness of its potential as an element of a therapeutic programme is limited. an unquestionable benefit of all types of pet therapy is their positive impact on the emotional and social sphere. closeness of animals not only reduces stress, anxiety, unrest, but also decreases the feeling of being lonely, improves mood, facilitates expres- sion of emotions, and helps develop social interactions and communication [ – ]. literature on canine assisted therapy is insufficient and not well-ordered. most authors include studies in their works which are based on their experience and observations as well as on not sufficiently objective reports of therapists or- ganizing canine assisted therapy. a significant problem also involves the lack of adequate methods used to evaluate em- pirical research, which affects the reliability of therapy results. another complication in determining the effectiveness of ca- nine assisted therapy is the fact that most often it is not the only therapeutic method applied in the rehabilitation of peo- ple with disabilities. currently, in the context of a quick development of canine assisted therapy and an increasing interest in the method, numerous authors have tried to carry out objective and accu- rate studies confirming the effectiveness of canine assisted therapy. the world health organization formally acknowl- edged a beneficial impact of closeness of animals on human health, in particular in treating mental illnesses, cardiovas- cular diseases, ailments of old age, and pain [ ]. in the authors’ studies, an attempt was made to evaluate the effectiveness of canine assisted therapy as a complemen- tary method in the rehabilitation process of children with physi- cal and intellectual disabilities. the results indicate that ca- nine assisted therapy brought the greatest effects in terms of attention ( %), locomotor skills ( %), motor functioning ( %), downtime improvement ( %), balance and coordina- tion ( %), and the manner of expressing feelings by chil- dren ( %). therapeutic benefits were also observed in the emotional and social sphere. very similar studies were conducted by nawrocka-rohnka [ ], who focused on the assessment of the impact of canine assisted therapy on children with developmental disorders. overall, children (boys and girls) aged – years partici- pated in the study. they suffered from various developmen- tal disorders, such as autism, asperger syndrome, intellectual disability, general developmental disorders, cerebral palsy, meningomyelocele, or anaplastic glioma. the study indicated visible improvement in various spheres of the children’s de- velopment. a progress in the openness to new situations, in skills to enter relationships with a dog or a therapist, and in verbal communication was observed in children with mental disability and autism, while improvement in locomotor skills referred only to patients with cerebral palsy and meningomy- elocele. positive aspects of canine assisted therapy were also observed by boguszewski et al. [ ]. their study involved children with down syndrome, whose average age equalled . years. two groups were created: ( ) the study group, consisting of children who participated in canine assist- ed therapy; ( ) the control group of children who did not participate in any additional classes. in % of the canine assisted therapy subjects, improvement in terms of com- munication was observed. additionally, children from group experienced a significant increase of self-confidence ( %), vocabulary extension ( %), as well as improvement in the expression of feelings and emotions ( %). children partici- pating in canine assisted therapy performed most daily activi- ties, such as moving, sitting, getting up, independently or with a small assistance of third persons, while those from the control group could not get dressed or deal with physiolog- ical needs on their own. differences between groups and were statistically significant. benefits from pet therapy included in a therapeutic pro- gramme were also shown by elmacı and cevizci [ ], who evaluated the impact of canine assisted therapy and activ- ity in rehabilitation of children with cerebral palsy and phys- ical and mental disabilities. ten children divided into re- search groups participated in the study. the assumed goals were achieved in all groups. children experiencing fear, anxi- ety, and difficulties due to their disabilities in daily life learnt to deal with their concerns, set their goals, and planned how to achieve them. during the study, children improved their skills to use their body in accordance with their possibilities. additionally, they developed their empathic and communica- tion skills, and canine assisted therapy helped them learn to obtain and give help. yap et al. [ ] presented the perception and state-of- the-art among employees of the royal children’s hospital in melbourne, australia, concerning the application of ani- mal assisted therapy in rehabilitation of disabled children, in particular children with cerebral palsy, autism spectrum dis- orders, and brain damage. the participants were recruited through an internet bulletin available only for the hospital employees. in total, employees of the hospital partici- pated in the study. out of these, % had heard about ani- mal assisted therapy; however, half of them said that their knowledge about animal assisted therapy was limited. nearly all respondents believed that animal assisted therapy would be helpful in rehabilitation of children suffering from cerebral palsy ( %), autism spectrum disorders ( %), and acquired brain damage ( %). in the conducted study, it was suggested that in the case of children with cerebral palsy, an animal would help in physical rehabilitation, encouraging the child to move. with regards to children with autism spectrum dis- orders and brain damage, it was indicated that animals could support emotional regulation, having a calming and relaxing influence and decreasing the intensity and frequency of ag- gressive behaviours. among the benefits of animal assisted therapy included in the therapeutic proceedings at the hos- pital, the respondents also listed: improvement of mood, in- creased motivation, decreased feeling of loneliness, and fa- cilitated social interaction and communication. the beneficial effects of canine assisted therapy on the improvement of well-being and quality of life in hospitalized children were confirmed by braun et al. [ ], who focused on capturing changes in the perception of pain among children aged – years. their study participants were divided into groups – the intervention group and the control group. the former consisted of subjects who participated in animal assisted therapy with a dog for – minutes. the latter group involved children who were asked to sit in silence for minutes. in both groups, before applying the given protocol, blood pressure and heart beat were taken, frequency of breaths was measured, and the level of pain was determined. the examinations and measurements were repeated after minutes. in the studied group, differences in the level of pain were lower after the task; however, re- duction of pain was times higher in children who partici- pated in animal assisted therapy as compared with those who relaxed in silence for minutes. the pain reduction was similar to that observed after oral administration of paracetamol. i. grabowska, b. ostrowska canine assisted therapy in children rehabilitation physiotherapy quarterly (formerly fizjoterapia) , ( ) physiotherapyquarterly.pl calcaterra et al. [ ] observed that animal assisted ther- apy positively affected neurological, cardiovascular, and en- docrine indices in children exposed to stress and pain in the immediate postoperative period. their study involve chil- dren (boys and girls) aged – years. the patients were randomly assigned to groups, subjects each. in the first group, after a surgical procedure, children underwent -min- ute animal assisted therapy, while in the second group, stan- dard postoperative care was applied. to obtain the results, eeg was performed, heart beat and blood pressure were taken, saturation was checked, hemodynamic activity of the brain concerning changes in oxygen concentration in the prefrontal brain areas was checked with near infrared spec- troscopy, salivary cortisol levels were measured, and the visual pain scale was applied. in the animal assisted therapy group, lower pain sensation was observed in comparison with the standard postoperative care group. additionally, animal assisted therapy resulted in increased alertness and activity after general anaesthesia, caused emotional reactions in the prefrontal areas of the cerebral cortex, and induced an ad- aptation response of the cardiovascular system. an invaluable role of a dog assisting the daily activity of children with autism spectrum disorders and its positive im- pact on the functioning of the family were also proved by bur- goyne et al. [ ]. they conducted a study among parents whose children had therapy dogs and among parents being on the list of people waiting for an animal to be assigned to them. the study indicated that parents of children with au- tism spectrum disorders perceived having a therapy dog as valuable in treating their child’s disease. in comparison with the parents waiting for a therapy dog, guardians who al- ready had a dog believed that their children were less ex- posed to threats related to the external environment and that they were perceived more positively and treated with respect by other people; these parents also felt more com- petent caring for their children. the participants also sug- gested that the presence of a therapy dog facilitated nor- mal functioning of the family – the dog ensured the child’s safety during their stay at a shopping centre and prevented the child from feeling anxious and left alone when the par- ents were at work. among the benefits of having a dog, the parents also mentioned its positive impact on their child’s downtime and assistance in making friends. in their elaboration, schuck et al. [ ] provide initial re- sults concerning the effectiveness of animal assisted ther- apy in the case of children with adhd aged – . the re- search project involved children who were randomly assigned to one of therapeutic groups: a group with be- havioural and cognitive therapy and canine assisted inter- vention and a group with behavioural and cognitive therapy without canine assisted intervention; mascot dogs were used for the intervention. in both therapeutic groups – with and without canine assisted intervention – parents reported improvement in terms of developing social skills and pro- social behaviour, as well as improved concentration, atten- tion, and focus on currently performed actions. in all studied patients, the severity of adhd symptoms showed a linear decrease during the course of therapy; however, in children who participated in dog therapy, the symptoms of the dis- ease occurred much less frequently in comparison with those who only underwent behavioural and cognitive therapy, without animal assistance. limitations the study has some limitations. first, it is limited to cases. we could not compare our results with those obtained in a control group that included patients working without ca- nine assisted therapy. further studies should assess whether canine assisted therapy in children with disabilities has a su- perior effect compared with other therapy models. the second limitation consists in the fact that data collection was limited to interviews and observations. conclusions the analysis of the obtained results allows to draw the following conclusions: . canine assisted therapy affects improvement in bal- ance, coordination, and motor skills of children with disabilities. . closeness of an animal during therapy calms children down and relaxes them. . it cannot be clearly stated whether canine assisted therapy contributes to the improvement of cause and effect thinking. . canine assisted therapy reduces aggressive behav- iours in children with developmental disorders to a small extent. . canine assisted therapy is worth recommendation as an effective method complementing the rehabilitation pro- cess of children with intellectual and physical disabilities. disclosure statement no author has any financial interest or received any finan- cial benefit from this research. conflict of interest the authors state no conflict of interest. references . convention on the rights of the child, adopted by the united nations general assembly on november . . gręda a. canine assisted therapy as a method of work- ing with disabled children in poland [in polish]. in: kędra e (ed.), chosen issues of paediatrics and dis- abled children care [in polish]. legnica: wyższa szkoła medyczna; ; – . . drwięga g, pietruczuk z. dog therapy as a form of sup- porting the development of a disabled child [in polish]. niepełnosprawność – zagadnienia, problemy, rozwią- zania. ; ( ): – . . kurzeja a, godawa j. the use of animal assisted ther- apy in pedagogical 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child care [in polish]. legnica: wyższa szkoła medyczna; . . dimitrijević i. animal-assisted therapy – a new trend in the treatment of children and adults. psychiatr danub. ; ( ): – . . grandgeorge m, hausberger m. human-animal rela- tionships: from daily life to animal-assisted therapies. ann ist super sanita. ; ( ): – ; doi: . / ann_ _ _ . . kulisiewicz b. welcome, little dog! canine assisted therapy in supporting the development of children with special educational needs [in polish]. kraków: oficyna wydawnicza impuls; . . machoś-nikodem m. canine assisted therapy program of a polysensory stimulation in communication [in polish]. warszawa: centrum metodyczne pomocy psycholo- giczno-pedagogicznej; . . chalmers d, dell ca. applying one health to the study of animal-assisted interventions. ecohealth. ; ( ): – ; doi: . /s - - - . . cirulli f, borgi m, berry a, francia n, alleva e. animal- assisted interventions as innovative tools for mental health. ann ist super sanita. ; ( ): – ; doi: . /ann_ _ _ . . odendaal js. animal-assisted therapy – magic or medi- cine? j psychosom res. ; ( ): – ; doi: . /s - ( ) - . . boguszewski d, świderska b, adamczyk jg, biało szew- ski d. evaluation of the effectiveness of dog-assisted therapy in the rehabilitation of children with down syn- drome. a preliminary report [in polish]. prz med uniw rzesz inst leków. ; : – . . elmacı dt, cevizci s. dog-assisted therapies and ac- tivities in rehabilitation of children with cerebral palsy and physical and mental disabilities. int j environ res public health. ; ( ): – ; doi: . / ijerph . . yap e, scheinberg a, williams k. attitudes to and bene- fits about animal assisted therapy for children with dis- abilities. complement ther clin pract. ; : – ; doi: . /j.ctcp. . . . . braun c, stangler t, narveson j, pettingell s. animal- assisted therapy as a pain relief intervention for children. complement ther clin pract. ; ( ): – ; doi: . /j.ctcp. . . . . calcaterra v, veggiotti p, palestrini c, de giorgis v, ra- schetti r, tumminelli m, et al. post-operative benefits of animal-assisted therapy in pediatric surgery: a ran- domised study. plos one. : ( ):e ; doi: . /journal.pone. . . burgoyne l, dowling l, fitzgerald a, connolly m, browne jp, perry ij. parents’ perspectives on the value of as- sistance dogs for children with autism spectrum disorder: a cross-sectional study. bmj open. ; ( ):e ; doi: . /bmjopen- - . . schuck se, emmerson na, fine ah, lakes kd. canine- assisted therapy for children with adhd: preliminary findings from the positive assertive cooperative kids study. j atten disord. ; ( ): – ; doi: . / . peptidome characterization and bioactivity analysis of donkey milk j o u r n a l o f p r o t e o m i c s ( ) – available online at www.sciencedirect.com sciencedirect www.elsevier.com/locate/jprot peptidome characterization and bioactivity analysis of donkey milk susy piovesana, anna laura capriotti⁎, chiara cavaliere, giorgia la barbera, roberto samperi, riccardo zenezini chiozzi, aldo laganà dipartimento di chimica, sapienza università di roma, piazzale aldo moro , rome, italy a r t i c l e i n f o ⁎ corresponding author at: dipartimento di ch italy. tel.: + . e-mail addresses: susy.piovesana@unirom chiara.cavaliere@uniroma .it (c. cavaliere), g riccardo.zenezini@uniroma .it (r. zenezini c http://dx.doi.org/ . /j.jprot. . . - /© elsevier b.v. all rights rese a b s t r a c t article history: received january accepted january donkey milk is an interesting commercial product for its nutritional values, which make it the most suitable mammalian milk for human consumption, and for the bioactivity associated with it and derivative products. to further mine the characterization of donkey milk, an extensive peptidomic study was performed. two peptide purification strategies were compared to remove native proteins and lipids and enrich the peptide fraction. in one case the whole protein content was precipitated by organic solvent using cold acetone. in the other one the precipitation of the most abundant milk proteins, caseins, was performed under acidic conditions by acetic acid at ph . , instead. the procedures were compared and proved to be partially complementary. considered together they provided peptide identifications for donkey milk, mainly coming from the most abundant proteins in milk. the bioactivity of the isolated peptides was also investigated, both by angiotensin- converting-enzyme inhibitory and antioxidant activity assays and by bioinformatics, proving that the isolated peptides did have the tested biological activities. biological significance the rationale behind this study is that peptides in food matrices often play an important biological role and, despite the extensive study of the protein composition of different samples, they remain poorly characterized. in fact, in a typical shotgun proteomics study endogenous peptides are not properly characterized. in proteomics workflows one limiting point is the isolation process: if it is specific for the purification of proteins, it often comprises a precipitation step which aims at isolating pure protein pellets and remove unwonted interferent compounds. in this way endogenous peptides, which are not effectively precipitated as well as proteins, are removed too and not analyzed at the end of the process. moreover, endogenous peptides do often originate from precursor proteins, but in phenomena which are independent of the shotgun digestion protocol, thus they can be obtained from cleavage specificities other than trypsin's, which is the main proteolytic enzyme employed in proteomic experiments. for this reason, in the end, database search will not be effective for identification of these peptides, thus the need to provide different workflows for peptide analysis. in the work presented in this paper this issue is considered keywords: peptidomics donkey milk peptide purification protein precipitation imica, sapienza università di roma, box no. , roma , piazzale aldo moro , rome, a .it (s. piovesana), annalaura.capriotti@uniroma .it (a.l. capriotti), iorgia.labarbera@uniroma .it (g. la barbera), roberto.samperi@uniroma .it (r. samperi), hiozzi), aldo.lagana@uniroma .it (a. laganà). rved. http://crossmark.crossref.org/dialog/?doi= . /j.jprot. . . &domain=pdf http://dx.doi.org/ . /j.jprot. . . mailto:susy.piovesana@uniroma .it mailto:annalaura.capriotti@uniroma .it mailto:chiara.cavaliere@uniroma .it mailto:giorgia.labarbera@uniroma .it mailto:roberto.samperi@uniroma .it mailto:riccardo.zenezini@uniroma .it mailto:aldo.lagana@uniroma .it http://dx.doi.org/ . /j.jprot. . . j o u r n a l o f p r o t e o m i c s ( ) – for the first time for the analysis of the peptides isolated in donkey milk samples, which have been chosen for its nutritional interest. this study provides additional knowledge on this milk, already characterized by traditional proteomics studies and peptidomic studies after simulated digestion. this type of study is not just a description of the naturally occurring peptidome of a sample, but also represents a starting point to discover and characterize those naturally occurring peptides responsible for the observed bioactivities of biological samples, as in the case of donkey milk, which would remain uncharacterized by other approaches. in this paper an analytical protocol was described for the efficient isolation and purification of peptides in donkey milk, assessing the effect of the purification protocol on the final identifications. purified peptide samples were also checked to empirically elucidate any ace inhibitory or antioxidant activity. finally, the peptidomic results were also further mined by a bioinformatic-driven approach for bioactive peptide identification in the donkey milk samples. in our opinion, the main strengths of this study are related to the improved analytical workflow (either as purification protocol comparison or analytical platform development) which provides a high number of identified peptides, for which the biological significance as potential bioactive peptides has also been investigated. © elsevier b.v. all rights reserved. . introduction donkey (equus asinus) is a member of the horse family, which has been used as a working animal since antiquity and nowadays in pet therapy or food production. in particular, commercial donkey milk is a valuable product and can be used in multiple applications, to manufacture dairy products as well as cosmetics and soaps. one of the main important features of donkey milk resides on its resemblance to human milk, with similar lactose and mineral contents, fatty acid and protein profiles, which make it the most appropriate mammalian milk for infant consump- tion [ , ], and in those cases in which other milk types cannot be employed, such as in presence of cow milk allergies in children and adults [ , ]. in particular, donkey milk is the best candidate as substitution of human milk for clinical tolerabil- ity, palatability and nutritional adequacy for children affected by a cow's milk protein allergy, furnishing additional physi- ological functions as well, such as providing antibacterial substances, digestive activity molecules, growth factors and hormones [ ]. apart from the above mentioned properties, donkey milk is receiving increasing attention due to other interesting biological activities, such as the antioxidant activity [ ], the immuno-stimulating ability and anti-inflammatory effects, which may be useful in the treatment of immune-related diseases in humans and prevent atherosclerosis [ ]. moreover other interesting activities have been reported, such as the antimicrobial properties, due to the high concentration of lysozyme and lactoferrin [ ], the antiviral activity [ ], and the antiproliferative effect on a human lung cancer cells [ ]. given the strong correlation between nutrition and health, the characterization of the main constituent of food is of fundamental importance. in this context proteins are key nutrients and some also display a bioactivity in their native form. in some other cases, however, the bioactivity is cryptic and latent until proteolytic release of the active peptides. bioactive peptides can be part of the endogenous peptidome of food or they can be released by enzymatic activity during gastrointestinal digestion or produced during ripening and fermentation. milk, as well as dairy products as a whole, is one of the major sources of biologically active peptides [ ]. in the case of milk bioactive peptides, the manifestation of latent bioactivities encrypted in proteins depends on where the proteolysis occurs (mammary gland or gastrointestinal tract) and may require the synergistic action of the bioactive peptides and other agents (such as lipids, sphingolipids, oligosaccharides). one of the major proteins responsible for bioactive peptide release is casein, together with the other main constituents of milk [ ]. however, the most abundant milk proteins (αs -, β-, and κ-casein, β-lactoglobulin) have little or no bioactivity in their native state, with the exception of α-lactalbumin and lactoferrin. the latter exemplifies the complexity of the bioactivity in milk, because it has bioactiv- ities in the native form (iron-binding, immunoregulation) and after hydrolysis into peptides (releasing bactericidal, anti- inflammation and immunoregulatory peptides). provided the importance and the interest for donkey milk for human consumption, the characterization of the protein and peptide content of this food matrix is significant. the proteomic profile of donkey milk has been elucidated over the years [ – ], as well as the analysis of the potentially bioactive peptides released after simulated hydrolysis in gastrointestinal conditions [ ]. however, a comprehensive peptidomic analysis of commercial donkey milk is still lacking and would be useful, to provide a more complete overview of the nutritional potential. this is pursued in the present work, where two methods for peptide isolation from commercial donkey milk are investigated and compared. in one case all proteins were precipitated in cold acetone, whereas in the second one only caseins, the main constituents of milk, were precipitated at their isoelectric point (pi). the supernatants containing the peptides were then purified by c spe and analyzed by reversed phase nanohplc with direct injection into a orbitrap mass spectrometer for peptide sequencing. finally, two of the most important biological activities, namely angiotensin-converting-enzyme (ace) inhibition and antioxidant activity, were tested on the purified peptides. in j o u r n a l o f p r o t e o m i c s ( ) – addition, the list of identified peptides were searched in databases including known bioactive peptides (biopep, http://www.uwm.edu.pl/biochemia/index.php/pl/biopep/ and peptidedb, http://peptides.be/). . materials and methods . . chemicals and reagents all chemicals, reagents, and organic solvents of the highest grade available were purchased from sigma-aldrich (st. luis, mo, usa) unless otherwise stated. ace from porcine kidney was purchased from sigma-aldrich (st. luis, mo, usa). deion- ized water was prepared with an arium vf system from sartorius (göttingen, germany). spe c cartridges were by bond elut (varian, palo alto, ca, usa). commercial donkey milk was purchased from a local farm (azienda agricola mariucci, rignano flaminio, rome, italy). . . donkey milk delipidation donkey milk samples were centrifuged at ×g for min at °c, the upper milk fat layer was removed, the defatted milk aliquoted and frozen at − °c for further processing. . . protein precipitation two different protocols for protein precipitation were chosen, i.e. employing cold acetone or acetic acid at ph . . for each precipitation procedure three experimental replicates were performed. . . . protein precipitation by cold acetone for the first protocol all proteins present in the samples were precipitated. an aliquot of milk sample ( . ml) was placed in an acetone-compatible tube, and four volume of cold (− °c) acetone were added ( ml). the tube was vortex shacked and incubated overnight at − °c. the precipitated proteins were collected by centrifugation ( ×g, min at °c), the supernatant was dried down using a speed-vac sc express (thermo s avant, holbrook, ny, usa) and solubi- lized in . ml of ddh o with . % of tfa. . . . protein precipitation by acetic acid in the second protocol, only caseins were precipitated. milk aliquots were added with mol l− acetic acid to the final ph value of . (pi); then samples were centrifuged for min at °c and ×g, and the supernatant divided into . ml aliquots. before c spe peptide purification, each aliquot was added with tfa to reach the final . % (v/v) concentration. . . peptide solid phase extraction all samples were purified by spe onto c cartridges, previously conditioned with acetonitrile (acn). after loading, peptides were rinsed with . % tfa aqueous solution and then eluted with acn/ddh o ( / , v/v) with . % tfa, and dried in the speed-vac. samples were reconstituted with μl of either . % formic acid (hcooh) aqueous solution for nanohplc–ms/ms analysis, tris hcl buffer ( mmol l− tris hcl, ph . , mmol l− nacl) for the ace assay or ddh o for the antioxidant assay. all samples were stored at − °c until use. . . nanohplc-ms/ms analysis nanohplc coupled to ms/ms analysis was performed on a dionex ultimate (dionex corporation sunnyvale, ca, u.s.a.) directly connected to a hybrid linear ion trap–orbitrap mass spectrometer (orbitrap elite, thermo scientific, bremen, germany) by a nanoelectrospray ion source. peptide mixtures were enriched on a μm id × mm acclaim pepmap c ( μm particle size, Å pore size) precolumn (dionex corporation sunnyvale, ca, u.s.a.), employing a premixed mobile phase made up of ddh o/acn : (v/v) containing . % (v/v) hcooh, at a flow-rate of μl min− . then, peptide mixtures were separated by rp chromatography using a lc system equipped with a cm long fused silica nanocolumn, μm id, in-house packed with acclaim-c . μm microparti- cles, and outlet kasil frit. the lc gradient was optimized to detect the largest set of peptides using ddh o/hcooh ( . : . , v/v) as mobile phase a and acn/hcooh ( . : . , v/v) as mobile phase b. after an isocratic step at % b for min, b was linearly increased to % within min and then to % within min; afterward, phase b was maintained at % for min, and increased to % within the following min. then, phase b was maintained at % for min to rinse the column. finally, b was lowered to % over min and the column re-equilibrated for min ( min total run time). ms spectra of eluting peptides were collected over an m/z range of – , using a resolution setting of , (full width at half-maximum at m/z ), operating in the data-dependent mode to automatically switch between orbitrap-ms and linear ion trap-ms/ms acquisition. ms/ms spectra were collected for the most abundant ions in each ms scan. rejection of + , and unassigned charge states was enabled. all ms/ms spectra were collected using normal- ized collision energy of %, and an isolation window of m/z. ion trap and orbitrap maximum ion injection times were set to and ms, respectively. automatic gain control was used to prevent overfilling of the ion traps and was set to × for full ftms scan, and × ions in msn mode for the linear ion trap. to minimize redundant spectral acquisitions, dynamic exclusion was enabled with a repeat count of and a repeat duration of s, with exclusion duration of s. in order to increase the number of identified peptides, three technical replicates (nanohplc-ms/ms runs) were performed for each of the three experimental replicates. . . database search and peptide identification all raw files from xcalibur software (version . sp . , thermo fisher scientific) were analyzed together using the maxquant software [ ] (version . . . ). the derived peak list was searched with the built-in andromeda search engine [ ] against the proteome of equus genus downloaded from uniprot (http://www.uniprot.org/) on - - ( , se- quences with , , residues) and a file containing frequently observed contaminants, such as human keratins, http://www.uwm.edu.pl/biochemia/index.php/pl/biopep/ http://peptides.be/ http://www.uniprot.org/ fig. – venn diagram depicting the distribution of the identified peptides for the two precipitation protocols. j o u r n a l o f p r o t e o m i c s ( ) – bovine serum proteins, and proteases. unspecific digestion was chosen and the minimum required peptide length was set to amino acids. neither fixed nor variable modifications were set. as no labeling was performed, multiplicity was set to . during the main search, parent masses were allowed an initial mass deviation of . ppm and fragment ions were allowed a mass deviation of . da. peptide-spectrum match and protein identifications were filtered using a target-decoy approach at a false discovery rate of %. the second peptide feature was enabled. the match between runs option was also enabled with a match time window of . min and an alignment time window of min. each peptide identification was accepted if detected in at least six technical replicates in a single purification protocol ( total runs). moreover, the lists of identified peptides were analyzed with two free databases that included known bioactive peptides, biopep (http://www.uwm.edu.pl/biochemia/index. php/pl/biopep/) and peptidedb (http://peptides.be/). . . ace inhibition and antioxidant activity assay the activity of ace was determined using hippuryl-his-leu hydrate as the substrate [ ] with the modification of mehanna and dowling [ ]. the assay was conducted in a tris buffer ( mmol l− , ph . ) containing mmol l− nacl. the same buffer was used to dilute the peptide samples, enzyme and substrate. the initial assay volume consisted of μl of the substrate ( mmol l− ), μl of ace solution containing mu of declared enzyme activity and μl of assay sample. the mixture was incubated at °c for min. the reaction was quenched by adding μl of mol l− hcl and the resulting hippuric acid was extracted with . ml of ethyl acetate, centrifuging it for min at ×g and °c. after centrifu- gation, ml of the organic layer was dried down. the hippuric acid was redissolved in ml ddh o, and the absorbance value was determined at nm by a uv/visible spectrophotometer (v- , jasco, easton, u.s.a.). the inhibition activity (ia) was calculated using the following equation: ia %ð Þ ¼ ac–bcð Þ– as–bsð Þ½ �= ac–bcð Þ � where: ac is the absorbance of the control sample (enzyme with substrate,) bc is the absorbance when the stop solution was added before the reaction occurred in the control sample (blank control sample, substrate with hcl and enzyme), as is the absorbance of the reaction mixture (peptide sample, substrate and enzyme), bs is the blank of the sample (peptide sample, substrate with hcl and enzyme). for the antioxidant activity, a solution . mmol l− contain- ing , -diphenyl- -picrylhydrazyl (dpph) was used. the dpph radical-scavenging activity was measured according to the method of huang and mau [ ]. the dpph solution was diluted with methanol to obtain a final . mmol l− concentration. an aliquot of ml of donkey milk peptide sample was mixed with ml of methanol solution containing . mmol l− dpph radicals. the mixture was kept for min in the dark, and the absorbance was determined at nm. a solution methanol/ddh o, / (v/v) was used as a blank. scavenging dpph activity was calculated according to the following equation: aa% ¼ ab–asð Þ= abð Þ½ � � where as is the absorbance of the peptide sample and ab is the absorbance of the blank. . results and discussion . . method development the analysis of donkey milk samples provided a total of identified peptides, divided into peptides for the acetone precipitation protocol and peptides for the precipitation at ph . . slightly more than half of the identifications ( %) were common to both protocols, whereas the acetone precipitation protocol provided the largest unique contribution, with % of the total identifications, and the precipitation in acidic condi- tions provided an additional minor contribution, with % of the total identifications (fig. ). in the experiment the two precipitation protocols were compared because concentration and purification of peptide samples are important for optimizing the conditions for the following nanohplc–ms/ms analysis. interfering compounds must be removed for working in optimized conditions to maximize the final peptide chromatographic separation and ms/ms sequencing, thus in the case of peptide analysis lipids and whole proteins are both interfering compounds. there- fore the protocols both comprised a delipidation step and a protein precipitation one. the former was the same for both protocols and consisted in a simple centrifugation to remove the lipid content. this operation is performed at a relatively high speed, which is suitable to eliminate not only lipids, but also α s-casein [ ]. after lipid removal, the samples were subjected to two different protein precipitation methods, with different efficiency in peptide extraction and purification. in the first case the whole protein content was organic solvent precipitated using cold acetone. in the second case only the most abundant proteins, caseins, were precipitated, by acidification to pi. this choice relied on the fact that there is no universal protein precipitation method suitable for all samples. cold acetone precipitates almost all proteins, but http://www.uwm.edu.pl/biochemia/index.php/pl/biopep/ http://www.uwm.edu.pl/biochemia/index.php/pl/biopep/ http://peptides.be/ j o u r n a l o f p r o t e o m i c s ( ) – few peptides might precipitate as well, whereas the precipi- tation at pi is selective for caseins, thus some of the less abundant proteins remain in the supernatant and might impair the peptide identification. for these reasons the employ of both protocols in separate samples could be useful to maximize peptide identification in donkey milk samples. moreover, the analysis of precipitation supernatants pointed out that for peptide analysis a dedicated workflow was necessary. in fact, these peptides are not analyzed in typical proteomics protocols, since the supernatant are discarded and only precipitated purified proteins are further analyzed. besides, even in the case peptides could be recovered in the protein pellet, the following sample processing and, in particular, data management, was not suitable for their final identification; because peptides are likely to originate from proteins but with cleavage specificity which is different from that of the enzyme employed for digestion (in most of the case, trypsin). additionally, also considering peptidomic studies mining bioactivity and that investigate the peptidome profile after a certain event, such as gastrointestinal digestion fig. – scatter plots reporting the peptides identified in the tech b) precipitation in acidic conditions vs each other; c) acetone prec log iacetone vs log iph . values reported for the peptides com with log iacetone – log iph . either > or <– . simulation, these peptides are not be characterized as well, because typical workflows always focus on protein isolation before simulated digestion [ ]. thus, the strategy as proposed in the described workflow would allow for a more compre- hensive characterization of the peptidome of a sample. the peptide identifications pointed out that the two protocols provided partially overlapping results, but neither of them was sufficiently effective for a complete characterization. therefore a more complete analytical platform could be obtained by merging the results from each single protocol. scatter plots were used to assess the analytical reproduc- ibility and the correlation between the two purification protocols (fig. ). scatter plots obtained reporting the techni- cal replicates for the same type of procedure were a way to establish the reproducibility of the whole experiment (fig. a, b). the plots showed that the reproducibility was good and points aligned with low degree of scattering. this was supported by the pearson correlation values, which were also calculated. the acetone precipitation showed the best reproducibility (with coefficients ranging between . and nical replicates of: a) acetone precipitation vs each other; ipitation vs precipitation in acidic conditions; d) scatter plot of mon to both purification protocols. red point refer to peptides j o u r n a l o f p r o t e o m i c s ( ) – . ). points were more scattered in the case of the precipita- tion at ph . , instead (with coefficients ranging between . and . ). the same type of plot with replicates from different experiments graphically showed that even at tech- nical replicate level the two precipitation protocols performed differently and identified different peptides (fig. c). the correlation was very poor, indeed, with pearson correlation coefficients raging between . and . . to further understand the difference in method perfor- mance we investigated the intensities of the single peptides identified by both precipitation protocols. in particular, the logarithm values of the intensities for each peptide were used to calculate the difference in peptide abundance in the purified extracts from the two experimental procedures under investigation (fig. d). values along the diagonal line corresponded to peptides with comparable intensities; among the scattered points, the ones reported in red have difference values which are > or <− (i.e. twice as much abundances), indicating different intensities. in particular, peptides ( % of the common peptides) had more intense signals for the precipitation at ph . , whereas more than half as much, with peptides ( % of the common peptides) had more intense signals for the acetone precipitation. this result indicated that for common peptides, the performance of the two protocols was different and the precipitation with acetone could recover larger amounts of peptides, thus would be more suitable for their isolation in donkey milk. the observed differences could be ascribed to the different precipitation conditions, which produce a precipitate with a different surface area and occur in media with different polarity (aqueous or organic solvent). after this consideration, we evaluated the features of the identified peptides, namely the molecular weight (mw) and the grand average of hydropathicity (gravy) index value distribution (fig. a, b, respectively). considering the global peptide identifications, the mws ranged between and da, with % of the peptides comprised between and da. the same profile was observed considering the total identifications for each single precipitation protocols. a fig. – a) mw distribution (in da) and b) gravy index values of t of peptides, the single procedures and the common peptides iden (acetone*) or ph . (ph . *) precipitation procedures. slightly different distribution was observed considering only the peptides which showed a significant difference in intensity, in particular for lower mws. in fact, in the case of acetone precipitation (reported as acetone* in fig. a), the range – da was less represented ( % vs an average % value), whereas the range < da was slightly enriched ( % vs %). similarly, but with opposite trend, the same consideration for the precipitation in acidic conditions (reported as ph . * in fig. a) showed a richer – da population (with % vs %) and a less represented – da fraction (fig. a). as far as the hydrophobicity was concerned, the identified peptides had prevalently a hydrophilic nature, with % of the total identified peptides having a gravy values ≤ and % of them with intermediate values ( ≤ gravy ≤ − , fig. b). only % had a more hydrophobic nature. as before, by the comparison of the two precipitation protocols, practically no difference was observed. on the contrary, peptides isolated in significant different amount by either one of two protocols showed a different distribution, instead; the acetone precip- itation had % of the peptides with positive gravy index values (vs % of the total peptides and % of the ph . * more enriched peptides) whereas the opposite trend was observed for more hydrophilic peptides, which were better purified by protein precipitation in acid conditions (with % vs % for the total identified peptides and % for acetone* more enriched peptides). finally, the evaluation of the mw and gravy index of the identified peptides evidenced that the two purification protocols did not show overall differences in the chemical–physical properties of the purified peptides, with the exception of the peptides which are preferentially more enriched in one of the two procedures. particularly, the acetone protein precipitation was more selective for smaller and hydrophobic peptides whereas the protein precipitation in acidic conditions performed better in purifying medium-size and more hydrophilic peptides. considering the total peptide identification distribution and their differences in chemical–physical properties accord- ing to the purification protocols, neither of two procedures was able to provide a comprehensive purification method for he identified peptides reported according to the total number tified with a significant larger sc difference either in acetone fig. – heat maps graphically displaying the occurrence of the different amino acids in the primary sequence of the most represented parent protein of the identified peptides. green regions indicate low occurrence, red regions frequently appearing residues. j o u r n a l o f p r o t e o m i c s ( ) – peptides in donkey milk; therefore, due to the partially complementary information achievable by the two purifica- tions, a better description could be provided by the combined use of both of them. . . origin of the peptides in commercial donkey milk if the global peptide identifications were considered, then it was interesting to ascribe the different peptides to the original proteins (or protein groups in the case of shared peptides) that they came from. the peptides isolated in this experiment came from protein groups, identified for different species belonging to the equus genus. as already assessed for milk by different mammals [ ], also in the case of donkey milk the majority of the peptides originated from the most abundant milk proteins, in particular caseins. indeed, the most represen- tative proteins were β-casein, with peptides ascribed to its sequence ( % of the total identifications), and αs -casein, with ascribed peptides ( % of the total identifications). however, the third most abundant protein was serum amyloid a protein group, to which peptides ( %) were ascribed. this is an acute phase protein the concentration of which increases with inflammation. in particular, it has been suggested as a possible marker of mastitis in cows [ ]. the following most represented protein group originating the peptides insolated in the exper- iment was made up of perilipin and adipophilin-like protein group, with derived peptides ( %), which are lipid transport and storage proteins hypothesized to play a pivotal role in both formation and secretion of milk lipids [ ]. other minor protein groups were αs -casein, with ascribed peptides ( %), β-lactoglobulin- , with peptides ( %), αs -casein b, with peptides, κ-casein, with peptides, lysozyme c, with peptides, and fibrinogen α chain, with peptides. in order to understand the origin of the identified peptides, we counted how many times the single amino acid making up the peptides was found in the primary sequence of the most represented proteins. results are reported in the heat maps (fig. ). in the case of β-casein (d ec , – amino acids) the heat map graphically showed that the identified peptides were almost equally distributed along the protein primary sequence; however, most of them belonged to the central part, being concentrated in the regions determined by the amino acids e –v (with amino acids identified – times), k –l (with amino acids identified – times) and in the c-terminus region, in particular between t and v ( – times). all other regions contained less identified peptides or sequence motives not subjected to proteolysis at all. the same analysis for the second most abundant protein provided a different overview. in this case it was a protein group comprising two αs -caseins, one for equus asinus (p , – amino acids) and one for equus asinus africanus (c w , – ). in this case some peptides were not unique of a single proteins, thus the software ascribed them to both proteins; the two proteins are two isoforms which differ for the pentapeptide htpre (p , h –e ) and a two amino acid substitutions (q → a , and i → l for p and c w , respectively). however, in this case such peptides were reported only in the heat map for p , referring to domesticated donkeys, and therefore were much closer to the animals used to produce the milk samples. looking at the peptide distribution along the former protein, the proteolytic activity here was more extensive, with several cleavage sites occurring along the whole protein primary sequence, namely in the n–terminus and the initial part (r –l , residues occurring up to times), the central part of the protein (r –l , residues occurring up to times) and the c–terminus (h –w , residues occurring up to times). a similar situation was found for serum amyloid a protein, in which a protein group was found. here the identification was done by homology to equus caballus, however. in this group we considered the two most recurring proteins, namely f zta ( – ) and f bja ( – ), and considered the peptides found in their primary sequence (fig. ). in this case, as before, the degree of similarity was high, with only amino acids differing in the primary sequence of two after alignment. however, the most intensely colored parts fell into different regions of the two primary sequences. in f zta the most intense region was between r and y (with residues occurring up to times), whereas for f bja the region that is more prone to proteolysis was the one between n and a (with residues occurring up to times). in order to further investigate the origin of the peptides identified in the experiment, we looked for sequence cleavage specificity. for the analyzed donkey milk samples the peptide mixture can be very complex, more than the one obtained by either by a tryptic digestion typical of proteomics experiments [ ] or by in vitro simulated enzymatic digestion. in fact, peptides are released by the action of various unspecific and specific endogenous proteases. moreover, commercial milk is subjected to food-processing, such as pasteurization, which can further complicate the peptidomic profile by unspecific protein hydrolysis. the results are outlined in table . for each peptide we considered the first and last amino acid, table – number of times which the different amino acids, the n-terminus and the c-terminus have been found as first and last amino acid of each identified peptides or in the adjacent positions. amino acid before first amino acid last amino acid amino acid after a c d e f g h i k l m n p q r s t v w y n-terminus c-terminus j o u r n a l o f p r o t e o m i c s ( ) – and then the amino acids in the adjacent positions, either preceding or following in the primary sequence of the most probable protein to which the peptides were attributed. from this it was possible to observe that the distribution was not the same for the different amino acids. as observed in other milk peptide profiles [ ] also in the case of donkey milk there was a clear preference for hydrolysis after lysine (k) and arginine (r), which were the most occurring residues both as the last one in the identified peptides and the amino acid before in the primary sequence. this was consistent with the action of plasmin, which has a high preferential cleavage at the carboxyl side of lysine and arginine residues and which has been reported as one of the endogenous proteases in milk [ ]. however, for the same consideration, other residues were also frequently occurring, in particular alanine (a) and leucine (l). some peptides were derived from the extremities of the parent proteins, in particular the major part came from the c-terminus, with peptides, and only from the n-terminus. in addition, it should be noted that several peptides differed for the loss of the c-terminal amino acid, consistent with the action of exopeptidases and carboxypeptidases. . . bioactivity of peptides in commercial donkey milk two bioactivity assays were performed, pooling together the purified peptides by acetone protein precipitation and ph . casein precipitation. both assays showed the presence of the investigated bioactivities, with an antioxidant activity of % and ace inhibitory activity of %. moreover, all of the identified peptides were submitted to search in the biopep and peptidedb databases, which contain a list of biologically active and validated peptide sequences, in order to find out if any already established bioactive peptide was to be found. among all the identified peptides we found one for which the bioactivity has been reported before, the peptide tkteegefisegggvr. this fibrinopeptide belongs to fibrinogen α chain, one of the precursor proteins identified in the experiment, to which peptides were ascribed. this peptide has a major function in hemostasis as one of the primary components of blood clots. maternal fibrinogen is essential for successful pregnancy. fibrin deposition is also associated with infection. may also facilitate the immune response via both innate and t-cell mediated pathways. . conclusions the present work described the development of a workflow for the analysis of peptides in commercial donkey milk samples, also trying to determine the possible bioactivity by specific assays and bioinformatics. these peptides were purified from protein precipitation supernatants, obtained after cold acetone precipitation or precipitation of caseins at pi. the tested protocols resulted complementary and provid- ed total identifications. these peptides are not analyzed in typical proteomics workflows nor simulated digestion peptidomic analyses, thus the described protocols can be efficiently combined to provide an analytical platform for the comprehensive description of the peptide profile in donkey milk samples. conflict of interest statement the authors declare no conflict of interest regarding the material discussed in the manuscript. appendix a. supplementary data supplementary data to this article can be found online at http://dx.doi.org/ . /j.jprot. . . . r e f e r e n c e s [ ] bidasolo ib, ramos m, gomez-ruiz ja. in vitro simulated gastrointestinal digestion of donkeys' milk. peptide characterization by 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http://refhub.elsevier.com/s - ( ) - /rf http://refhub.elsevier.com/s - ( ) - /rf http://refhub.elsevier.com/s - ( ) - /rf http://refhub.elsevier.com/s - ( ) - /rf http://refhub.elsevier.com/s - ( ) - /rf http://refhub.elsevier.com/s - ( ) - /rf 	peptidome characterization and bioactivity analysis of donkey milk 	 . introduction 	 . materials and methods 	 . . chemicals and reagents 	 . . donkey milk delipidation 	 . . protein precipitation 	 . . . protein precipitation by cold acetone 	 . . . protein precipitation by acetic acid 	 . . peptide solid phase extraction 	 . . nanohplc-ms/ms analysis 	 . . database search and peptide identification 	 . . ace inhibition and antioxidant activity assay 	 . results and discussion 	 . . method development 	 . . origin of the peptides in commercial donkey milk 	 . . bioactivity of peptides in commercial donkey milk 	 . conclusions 	conflict of interest statement 	appendix a. supplementary data 	references impacts of music intervention on dementia: a review using meta-narrative method and agenda for future research review impacts of music intervention on dementia: a review using meta-narrative method and agenda for future research mahsa soufineyestani ,* , arshia khan and mina sufineyestani ���������� ������� citation: soufineyestani, m.; khan, a.; sufineyestani, m. impacts of music intervention on dementia: a review using meta-narrative method and agenda for future research. neurol. int. , , – . https://doi.org/ . / neurolint received: october accepted: december published: january publisher’s note: mdpi stays neu- tral with regard to jurisdictional clai- ms in published maps and institutio- nal affiliations. copyright: © by the authors. li- censee mdpi, basel, switzerland. this article is an open access article distributed under the terms and con- ditions of the creative commons at- tribution (cc by) license (https:// creativecommons.org/licenses/by/ . /). department of computer science, university of minnesota duluth, duluth, mn , usa; akhan@d.umn.edu the urban institute, school of energy, geoscience, infrastructure and society, heriot-watt university, edinburgh eh as, scotland, uk; ms @hw.ac.uk * correspondence: soufi @d.umn.edu abstract: background: dementia, a significant cognitive impairment, is characterized by a decline in memory. it affects an individual’s mood and behavior, which can impair their quality of life and well-being. studies show that the demand for applying music as a new therapy method for dementia has increased during the last decades. objective: to review the studies conducted on the impacts of music on different symptoms of dementia and provide readers with a more detailed picture of the efficacy of music, and recognize gaps in the literature. methods: electronic searches were conducted in the cochrane library ( ), embase ( ), medline and pubmed ( ), psycinfo ( ), and scopus ( ) databases. the search was comprised of all the literature from to . for the search, key terms including “dementia” and “music” or “music intervention” or “music therapy” and index terms “clinical trial” or “randomized controlled trials” were used. finally, after screening citations, studies were included. results: in general, it was observed that in most cases, music could be used as one of the safe and cost-effective non-pharmacological approaches for dementia treatment. however, in some studies, no impact or short-term effect of music on some symptoms of dementia such as wandering, agitation, and cognition was detected. conclusion: observing no effect or even negative impact of music on people living with dementia could be due to a random selection of music, fewer individuals, and the lack of a standard protocol. high heterogeneity in outcomes did not allow for clear conclusions on the benefits of music in dementia. this demands a comprehensive non-pharmacological music treatment approach to be designed for each stage of dementia to be employed alongside pharmacological treatments. this study proposes gaps in the research on the health impact of music on dementia that could be studied by future researchers. keywords: dementia; music; music intervention; music therapy; clinical trial; and randomized controlled trials . introduction dementia is an umbrella term for several progressive diseases such as alzheimer’s that affect memory, language, problem-solving, and the individual’s thinking ability, which interfere with their daily living activities [ ]. people living with dementia (pwd) usually face social and communication interaction problems, which negatively impacts on their lives and the people around them [ ]. there are various kinds of therapy methods for managing dementia symptoms: phar- macological and non-pharmacological. although evidence shows that pharmacological therapy can delay and somewhat control behavioral disorders in pwd, it cannot cure dementia [ ]. some popular non-pharmacological therapies are pet therapy [ ], robot therapy [ ], reminiscence therapy [ ], aromatherapy [ ], occupational therapy [ ], massage and touch therapy [ ], doll therapy [ ], light therapy [ ], and creative arts therapies (music, dance-movement, and drama) [ ]. music interventions are categorized as ‘mu- sic medicine’ when individuals listen to pre-recorded music that is offered by medical neurol. int. , , – . https://doi.org/ . /neurolint https://www.mdpi.com/journal/neurolint https://www.mdpi.com/journal/neurolint https://www.mdpi.com https://orcid.org/ - - - https://orcid.org/ - - - https://www.mdpi.com/ - / / / ?type=check_update&version= https://doi.org/ . /neurolint https://doi.org/ . /neurolint https://doi.org/ . /neurolint https://creativecommons.org/ https://creativecommons.org/licenses/by/ . / https://creativecommons.org/licenses/by/ . / https://creativecommons.org/licenses/by/ . / https://doi.org/ . /neurolint https://www.mdpi.com/journal/neurolint neurol. int. , personnel [ ]. in contrast, music therapy is clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program [ ]. unlike drug therapy, applying music as a treatment approach usually does not have any side effects. for this reason, many physicians and caregivers promote and encourage music therapy, or music intervention as a beneficial and alternative treatment method for dementia [ ]. although using music as a treatment approach cannot cure dementia symptoms, it can reduce the symptoms [ ]. even with advanced dementia—when pwd have severe problems with judgment, planning, reasoning, speech, and language—their responses to music are undeniable, and its impact can last for hours or even days [ ]. benefits of music treatment for people living with dementia several physiological and psychosomatic benefits of music have been mentioned in the literature. • biological/physiological: the physiological effect of music helps to balance vital signs such as blood pressure, heart rate, respiratory rate, and hormone levels [ , ]. • behavioral and psychological: the psychological effects of music help to reduce mood fluctuations and behavioral disorders such as depression, agitation, and aggres- sion [ , – ]. • cognitive: music also boosts communication skills, the quality of life, well-being, inti- macy, memory, self and environmental awareness, the ability to distinguish between the surroundings and moments of the day, and managing pain [ , , ]. among all music advantages, some of the most important ones are enhancement in language skills, verbal and non-verbal expressions, improvement of social activity and commu- nication, raising cognitive levels, and self-awareness [ , ]. pwd who have verbal communication problems can benefit from music as a non-verbal communication solution to express themselves without inhibitions. • emotional: music engages the individual’s attention (apathy) and helps them enjoy their life, improves their self-esteem, and communication, which leads to improvement in behavior [ ]. people living with dementia who listened to their favorite music were observed to have a decrease in stress level and an increase in relaxation and happiness [ ]. to retain the music benefits, people with dementia need to receive regular music treatment, which is approximately two to three times a week [ ]. overall, studies from the last years have shown improvement in cognitive, emotional, and behavioral and psychological symptoms of pwd through music treatment approaches, resulting in a better quality of life and wellbeing (figure ). music intervention can be performed at home or in residential aged care facilities, as individual [ ] or group therapy [ – ]. group music therapy boosts communication and interaction skills between pwd and improves their relationships with their caregivers and family members [ ]. music intervention has two types: active or receptive [ ]. in recep- tive mode, people living with dementia listen to the live, recorded, or background music for relaxation or changes in mood without any engagement [ , ]. on the other hand, active music therapy encourages the individual to be engaged with the music by singing along, playing basic musical instruments individually or within a group, moving their body to the rhythm, or dancing to the song. singing can decrease behavioral disorders, improve mood, and enhance cognitive functioning. singing also raises the heart rate and hormone levels [ , ]. playing a musical instrument can prevent or postpone the onset of dementia symptoms [ , ]. active music therapy improves pwd’s listening ability and helps them be aware of themselves, the environment, and the people around them. researchers have sometimes used the term ‘passive’ instead of ‘perceptive’ for music medicine. studies have shown that listening to music, specifically favorite and meaningful music, facilitates reminiscence and encourages more positive reactions. listening to music can have calming neurol. int. , impacts and help pwd to be connected to their family members, caregivers, and other residents [ ]. neurol. int. , , for peer review figure . benefits of music treatment for people living with dementia (pwd). music intervention can be performed at home or in residential aged care facilities, as individual [ ] or group therapy [ – ]. group music therapy boosts communication and interaction skills between pwd and improves their relationships with their caregivers and family members [ ]. music intervention has two types: active or receptive [ ]. in recep- tive mode, people living with dementia listen to the live, recorded, or background music for relaxation or changes in mood without any engagement [ , ]. on the other hand, active music therapy encourages the individual to be engaged with the music by singing along, playing basic musical instruments individually or within a group, moving their body to the rhythm, or dancing to the song. singing can decrease behavioral disorders, improve mood, and enhance cognitive functioning. singing also raises the heart rate and hormone levels [ , ]. playing a musical instrument can prevent or postpone the onset of dementia symptoms [ , ]. active music therapy improves pwd’s listening ability and helps them be aware of themselves, the environment, and the people around them. researchers have sometimes used the term ‘passive’ instead of ‘perceptive’ for music medicine. studies have shown that listening to music, specifically favorite and meaningful music, facilitates reminiscence and encourages more positive reactions. listening to music can have calming impacts and help pwd to be connected to their family members, care- givers, and other residents [ ]. previous review studies have limited their focus to the following aspects: a. specific symptoms of dementia such as depression [ , , , ], agitation [ , – ], cognition and memory [ , , – ], quality of life/well-being [ , ], and anxiety [ , , , ]; b. group music therapy [ ]; c. specific stage or type of dementia [ , , ]; d. recorded music [ ]; e. music and exercise [ ]; f. assessment tools for measuring music’s impact [ ]; g. residents living in a residential aged care facility [ ]; and h. individualized music [ ]. the main aim of this review was to investigate music’s efficacy on people living with dementia by exploring the changes in the different symptoms of dementia including a broader setting. we also provide readers with a more detailed picture of the music’s effi- cacy by analyzing the gaps in previous studies and suggesting more appropriate research design and methodological considerations that need to be addressed in future studies. . materials and methods search strategy and selection criteria figure . benefits of music treatment for people living with dementia (pwd). previous review studies have limited their focus to the following aspects: a. specific symptoms of dementia such as depression [ , , , ], agitation [ , – ], cognition and memory [ , , – ], quality of life/well-being [ , ], and anxiety [ , , , ]; b. group music therapy [ ]; c. specific stage or type of dementia [ , , ]; d. recorded music [ ]; e. music and exercise [ ]; f. assessment tools for measuring music’s impact [ ]; g. residents living in a residential aged care facility [ ]; and h. individualized music [ ]. the main aim of this review was to investigate music’s efficacy on people living with dementia by exploring the changes in the different symptoms of dementia including a broader setting. we also provide readers with a more detailed picture of the music’s efficacy by analyzing the gaps in previous studies and suggesting more appropriate research design and methodological considerations that need to be addressed in future studies. . materials and methods search strategy and selection criteria the objective of this meta-narrative review was to investigate the publications using a qualitative approach and systematic review by highlighting the contrasts and similarity on music’s efficacy. electronic searches in the cochrane library ( ), embase ( ), medline and pubmed ( ), psycinfo ( ), and scopus ( ) databases were performed to find all of the peer-reviewed publications in english that had the keywords and search terms “dementia”, “music”, “music intervention”, “music therapy”, “clinical trial”, and “randomized controlled trials” in their titles and abstracts. the time frame chosen for this search was from to . in general, studies that fit in all of the following criteria were included in this review: • intervention type • the focus of the study • experiment design • therapy approach • intervention setting • evaluation scales and results (figure ) neurol. int. , papers that did not have any details about one of the criteria as above-mentioned have not been included in this review. additional articles were identified through a review of reference lists of included articles, titles, and abstracts. identified citations were exported into mendeley, and duplicates were removed. neurol. int. , , for peer review the objective of this meta-narrative review was to investigate the publications using a qualitative approach and systematic review by highlighting the contrasts and similarity on music’s efficacy. electronic searches in the cochrane library ( ), embase ( ), medline and pubmed ( ), psycinfo ( ), and scopus ( ) databases were performed to find all of the peer-reviewed publications in english that had the keywords and search terms “dementia”, “music”, “music intervention”, “music therapy”, “clinical trial”, and “randomized controlled trials” in their titles and abstracts. the time frame chosen for this search was from to . in general, studies that fit in all of the following criteria were included in this review: • intervention type • the focus of the study • experiment design • therapy approach • intervention setting • evaluation scales and results (figure ) papers that did not have any details about one of the criteria as above-mentioned have not been included in this review. additional articles were identified through a re- view of reference lists of included articles, titles, and abstracts. identified citations were exported into mendeley, and duplicates were removed. figure . inclusion criteria of studies. . data extraction and quality assessment among the studies, only met the inclusion criteria and were selected for fur- ther investigation (figure ). figure . inclusion criteria of studies. . data extraction and quality assessment among the studies, only met the inclusion criteria and were selected for further investigation (figure ). neurol. int. , , for peer review figure . flow diagram of this review study. . results we extracted data on the study areas, type of dementia, intervention design, number of participants, study environment, conductor of the study, measurement scales, and re- sults. the measurement and results are summarized in the appendix a. table and figure illustrate the percentage of the selected studies based on the common symptoms of de- mentia and the type of music intervention design. among all of these studies, individual music intervention for people with dementia who lived in residential aged care facilities and listened to recorded music in a receptive mode has received more attention. some researchers have undertaken a general investigation of physiological signals that include all of the related behavioral symptoms of dementia. however, it seems that depression, agitation, and anxiety have received more attention from researchers. table . percentage of experiment design based on intervention type, setting, and dementia type music intervention (mi)/music medicine, and music therapy (mt). type of cognitive disorder intervention type individual/group therapy intervention setting dementia (all type): . % alzheimer’s only: . % dementia (all types) & alzheimer’s: . % active mi: . % receptive mi: . % receptive & active mi: . % active mt: . % receptive mt: . %live: % recorded: % group: % individual: % family home: . % hospital: . % residential aged care facility: . % figure . flow diagram of this review study. neurol. int. , . results we extracted data on the study areas, type of dementia, intervention design, number of participants, study environment, conductor of the study, measurement scales, and results. the measurement and results are summarized in the appendix a. table and figure illustrate the percentage of the selected studies based on the common symptoms of dementia and the type of music intervention design. among all of these studies, individual music intervention for people with dementia who lived in residential aged care facilities and listened to recorded music in a receptive mode has received more attention. some researchers have undertaken a general investigation of physiological signals that include all of the related behavioral symptoms of dementia. however, it seems that depression, agitation, and anxiety have received more attention from researchers. table . percentage of experiment design based on intervention type, setting, and dementia type music intervention (mi)/music medicine, and music therapy (mt). type of cognitive disorder intervention type individual/group therapy intervention setting dementia (all type): . % alzheimer’s only: . % dementia (all types) & alzheimer’s: . % active mi: . % receptive mi: . % receptive & active mi: . % active mt: . % receptive mt: . % live: % recorded: % group: % individual: % family home: . % hospital: . % residential aged care facility: . % neurol. int. , , for peer review figure . percentage of music treatment research in each area of dementia. . gaps in the research previous studies have identified some areas that need to be covered to draw clear conclusions on music’s efficacy for pwd. some of the suggested areas such as combining mt with other activities [ , , ], doing further research and methodological design [ , , – , , , , ], using a larger sample of randomized clinical trials [ , , , , ], and considering the impact of music on different types and stages of de- mentia [ ] are aligned with the items that we are going to discuss. based on our investi- gation, the following gaps need to be addressed in experiment design and methodologies in future studies to have more reliable and evidence-based results. • control group: to compare individuals living with dementia who experience music treatment and others who only receive pharmacological treatment or are involved in other activities, it is necessary to divide people with dementia into two groups: a control group or a study group. although sixteen papers out of [ , , , , , – ] included both groups in their studies, some studies did not have a control group in their experiments [ , , , , – ]. for example, in two studies [ , ] with both control and study groups, a greater behavioral disturbance was noticed between the study group than the control group. additionally, in another paper [ ] with only a study group, no changes was noted in memory. thus, it is hard to conclude that mu- sic is an effective treatment for dementia, especially in the absence of a control group when there is a discrepancy between the results. • gender: although researchers have included different genders (females and males) in their study, only one of the studies identified music’s impact based on gender [ ]. in this study, individuals listened to unfamiliar childhood songs or a spoken version of visual stimuli, but no significant difference was observed between genders. there- fore, further cross-sectional studies are needed to determine if gender has any effect. • sample size: the sample size of the studies varied from eight to participants. in several studies, the sample size of the experiment was less than ten [ , , , ]. for example, one research analyzed the behavior of nine pwd who received music ther- apy [ ], where expressing more positive emotions and improvement in their well- being and communication level were observed. however, two studies [ , ] in- cluded a larger population ( and , respectively) in their research, but did not find any significant changes in pwd symptoms. hence, it is not clear that music caused changes in the level of dementia symptoms because of the use of a smaller sample size. • long-term effect: some studies have found that music had a short-term impact, but it is unclear if music can be beneficial in the long-term. only two studies reported long-term [ , ], one study reported short-term [ ], and one study reported both short- and long-term effects of music [ ]. in one study conducted in a residential age care facility [ ], residents were divided into three groups doing activities such as figure . percentage of music treatment research in each area of dementia. . gaps in the research previous studies have identified some areas that need to be covered to draw clear conclusions on music’s efficacy for pwd. some of the suggested areas such as combining mt with other activities [ , , ], doing further research and methodological design [ , , – , , , , ], using a larger sample of randomized clinical trials [ , , , , ], and considering the impact of music on different types and stages of dementia [ ] are aligned with the items that we are going to discuss. based on our investigation, the following gaps need to be addressed in experiment design and methodologies in future studies to have more reliable and evidence-based results. • control group: to compare individuals living with dementia who experience music treatment and others who only receive pharmacological treatment or are involved in other activities, it is necessary to divide people with dementia into two groups: a control group or a study group. although sixteen papers out of [ , , , , , – ] included both groups in their studies, some studies did not have a control group in their experiments [ , , , , – ]. for example, in two studies [ , ] with both control and study groups, a greater behavioral disturbance was noticed between the neurol. int. , study group than the control group. additionally, in another paper [ ] with only a study group, no changes was noted in memory. thus, it is hard to conclude that music is an effective treatment for dementia, especially in the absence of a control group when there is a discrepancy between the results. • gender: although researchers have included different genders (females and males) in their study, only one of the studies identified music’s impact based on gender [ ]. in this study, individuals listened to unfamiliar childhood songs or a spoken version of visual stimuli, but no significant difference was observed between genders. therefore, further cross-sectional studies are needed to determine if gender has any effect. • sample size: the sample size of the studies varied from eight to participants. in several studies, the sample size of the experiment was less than ten [ , , , ]. for example, one research analyzed the behavior of nine pwd who received music therapy [ ], where expressing more positive emotions and improvement in their well-being and communication level were observed. however, two studies [ , ] included a larger population ( and , respectively) in their research, but did not find any significant changes in pwd symptoms. hence, it is not clear that music caused changes in the level of dementia symptoms because of the use of a smaller sample size. • long-term effect: some studies have found that music had a short-term impact, but it is unclear if music can be beneficial in the long-term. only two studies reported long-term [ , ], one study reported short-term [ ], and one study reported both short- and long-term effects of music [ ]. in one study conducted in a residential age care facility [ ], residents were divided into three groups doing activities such as music-movement, music listening, and social activities for weeks. the residents’ agitation levels were monitored and compared before, during, and after involvement with the activities. short-term change in the agitation level of those who were engaged with music-movement activity was noted. in contrast, no changes in agitation level of the residents in other groups were observed. additionally, in another study conducted for weeks, no statistically significant differences were observed in the memory of the residents [ ]. as a result, more high-quality longitudinal studies are needed to monitor the benefits of music in dementia over a period of time, particularly in the long-term. • live or recorded music: music intervention sessions are conducted either as a recorded [ , , , , , , , , , , , ] or live music [ ] based on individual’s preference, or recorded [ , , , , , , ] or live music [ ] selected by caregivers, while some other studies have employed music therapy sessions either as a recorded music based on the individual’s preference [ , ], recorded [ , , , ], or live music [ , ] selected by music therapist. five studies observed that listening to live music and being engaged with the singer and/or singing the song and/or playing musical instru- ments boosted the general well-being, mood, quality of life, and pwd’s relationships with others [ , , , , ]. however, in some papers, changes in the health status of individuals living with dementia were observed while listening to recorded mu- sic [ , , , , ], which implies no apparent differences in the reviewed studies between playing live or recorded music. emotions connected to music might change the moods of people living with dementia. further cross-sectional studies using a control group are required to determine if the music transferring method has any effect. • music intervention or music therapy: researchers have sometimes mixed the defi- nition of music intervention (music medicine) with music therapy and considered any types of music treatment as music therapy. among the reviewed studies, only nine of them considered music therapy [ , , , , , , , ] and the remaining investigated music intervention. music therapy was examined either as an active therapy in individual [ , , ] or group [ , , ] modes, or receptive group ther- apy [ , ]. music intervention is considered either as active [ , , – , , ], receptive [ , , , , – , ], or both receptive and active modes [ , ]. although neurol. int. , most of the music therapy studies have reported positive changes in the individuals’ symptoms, in one study, no changes in wandering behavior were reported [ ]. while more positive responses in emotional states, behavioral and psychological symptoms of dementia (bpsd), and cognition of individual’s living with dementia was reported using active and perceptive music intervention [ , ], researchers did not talk about the differences between active and perceptive modes. studies that applied only one music transferring method had mixed results, and it is hard to conclude which ap- proach worked better. more studies need to be conducted in order to understand which approach is more effective for dementia treatment. • selecting appropriate music and professional therapists: the music treatment ap- proach aims to decrease the costs, and it is not obvious that it is necessary to hire professional music therapists to conduct music sessions, or medical personnel can conduct the therapy session. while some researchers have tried to use pwd’s fa- vorite song [ , , , , , , ] played by musicians, singers, music therapists, or trained caregivers (who are taught by a music therapist to conduct the music ses- sions) [ , , , , , , , ], others chose random songs performed by caregivers or facility staff [ , , ]. this variation and inconsistency in the delivery of music make it hard to generalize the results. therefore, further research on performing music with professional music therapists or facility staff is needed. furthermore, perhaps music should be chosen based on the individual’s preference by asking their family members or conducting a survey to determine which type of music has a more restorative impact on pwd. • physiological impact: in addition to changes in psychological data, dementia may cause changes in physiological signals. one study [ ] found that music is a beneficial modality to balance vital signs such as blood pressure, heart rate, and respiratory rate. most of the studies focused on the psychological data and ignored physiological signals. two studies used wearable sensors to measure physiological signals [ , ]. in one study [ ], the impact of music therapy was examined on elderly people with vascular dementia using an electrocardiogram (ecg) sensor. they noted an increment in heart rate variability (hrv) features such as mean values of inter beat interval (rr), root mean square of the successive differences (rmssd), proportion of nn (pnn ), and high frequency band during the music therapy session and a decrease in values of hrv features after the sessions. the drawback of focusing on the statistical analysis of the observed or neurological data is that the collected data in these studies dealt with mostly subjective data rather than taking into consideration the physiological and psychological data that was gathered using wearable sensors, which can capture more accurate changes in physiological and psychological symptoms. thus, it is impossible to reach an overall conclusion that music can improve pwd’s physiological signals. • lack of an exact measurement scale: although most of the studies employed quanti- tative measurement mechanisms that used clinical scales, some researchers did not apply any particular measurement scale. some researchers have monitored changes in pwd’s moods and behavior by observing and analyzing their body or facial ex- pressions [ , , ], or reviewed self-reported surveys or caregiver notes [ , , ]. it is difficult to objectively assess the impact of complex multimodal intervention such as music. it seems that using some physiological measures such as heart rate, blood pressure, skin conductance, measuring stress hormones, and analyzing the brain signals would be beneficial to provide us with more reliable measures. • combination of music with pharmacological methods: one study [ ] pointed out that applying non-pharmacological treatments like music intervention or therapy and pharmacological treatment could mitigate symptoms of anxiety and depression in peo- ple with mild dementia, while it is unclear that observing all the changes in individual situations was only due to the addition of music to their treatment or combining music with pharmacological solutions. therefore, further studies with a control group are neurol. int. , necessary to explore whether control variables such as pharmacological treatments affect dementia symptoms. • combination of music with other activities: although some studies have proved that listening to music and being involved with social activities positively impact dementia symptoms, only nine studies combined various activities such as playing games, solving word-puzzles, gardening, and engaging in mental or physical activi- ties [ , , , , , , , , ]. these studies have shown that combining social activi- ties with music intervention or therapy can improve or postpone dementia symptoms. additionally, individuals who engaged in social activities demonstrated improvement in communication skills [ ]. several researchers applied music and playing games to reduce agitation, aggression, apathy, and anxiety levels, enhance communication skills, and improve emotional expressions [ ]. in another study [ ], pwd were divided into three groups engaged in either social activity, listening to music, or music with dance. it was concluded that the combination of music with dance could improve cognitive function, memory, and depressive symptoms while there was no significant changes in agitation among the three groups. in one study [ ], short-term reduction in agitation behaviors of pwd was reported while doing either social activities or listen to music played by a music therapist. researchers incorporated pwd in their study and compared changes in their behavior while listening to the music, singing along to the song and dancing, or doing daily recreational activities such as handwork, solving a puzzle, and cooking designed by the occupational therapists. these outcomes indicated that keeping pwd occupied with functional tasks might help with declining dementia symptoms. these studies are useful, but since they do not study music treatment approach in isolation, it is not apparent that music or other social activities improve their psychological symptoms. to have more reliable and valid results, there should be more studies examining the combined effect of music with other activities involving individuals in both activities during a period of time and observing their behaviors for each type of activity. • impact on agitation, wandering, and cognition: the impact of music treatment on the agitation, wandering, and cognition of individuals with moderate or severe de- mentia is not completely clear. while seven out of studies discussed a reduction in agitation [ , , , , , , ], others reported no change in agitation. for example, in one study, no changes were noticed on wandering and agitation [ ]. another study [ ] did not find any differences in the individuals’ cognition levels. thus, more studies are required to investigate the impacts of music on agitation, wandering, and cognition. • benefits of music for family members and caregivers: in one study, it was mentioned that music therapy could also increase caregivers’ satisfaction [ ]. the impact of music was examined on eight pwd and their caregivers while professional music therapists taught caregivers to play pwd‘s favorite music by themselves at home. the comparison between the data revealed a decrease in the stress level and an increase in both groups’ relaxation and happiness. however, more studies like these should be conducted to determine music’s impact on family members and caregivers. . discussion and conclusions this meta-narrative review on the previous studies indicated some improvement in the physiological or psychosomatic behaviors of people living with dementia after music intervention [ , , , , , , ]. for example, music intervention may cause decrease in agitation [ , , , , , , ], anxiety [ , , , , , ], depression [ , , , , ], behavioral and psychological symptoms [ , , , ], and boost cognition, memory [ , , , , , , , , ], motor outcome, and quality of life [ , , , ], while there are studies that did not reach any clear conclusion about the effectiveness of music [ , ]. for instance, two studies showed no evidence or significant enhancement in the behavior and mood of people living with dementia [ , ]. these reviewed studies gave general results neurol. int. , that make it hard to generalize conclusions regarding the efficacy of music intervention in dementia care. therefore, this inconsistency between the results of music on agitation, wandering, and cognition demands further research in these areas. these results are in line with those previous systematic and meta-analysis reviews of the music’s impact on pwd that reported little or no effect on cognition [ , , , , , , , ], agitation [ , – , ], depression [ , , , , ], anxiety [ , , , , , ], aggressive behaviors [ ], and quality of life [ ]. for example, in one meta-analysis study [ ] on music’s effect on cognition, it mentioned that music therapy might be a complementary treatment if its impact is considered on a larger sample of randomized control trials [ ]. another problem with dementia is a sense of apathy; one solution to this could be involving individuals’ with different activities. for example, a combination of music intervention with other activities such as occupational therapy, social engagement, and pharmacotherapy may help to retain memory and decrease agitation behaviors. another study [ ] of cognitive function concluded that combining music therapy with cognitively stimulating activities such as dance, physical exercise, video game, and art can caused reduction in cognitive decline. the reviewers suggested drawing a more reliable conclusion required more evidence and a rigorous methodological investigation [ ]. another meta-analysis on the combination of music and physical exercise [ ] showed that the rhythmical music that involved pwd could be beneficial for some individuals. a research on the music’s efficacy on the anxiety level of individuals with mild to server dementia [ ] reported a decline in anxiety and suggested further research by considering larger group size, different range of age, and standardization of the best time for treatment [ ]. overall, these studies have focused on the short-term impacts of music on people with dementia. one of the drawbacks with the previous studies is using the terms incorrectly in the literature and referring to any type of musical intervention as a music therapy. thus, it is important to distinguish between using music intervention and music therapy. music intervention or therapy has mixed outcomes, which do not guarantee it as a long-term therapy solution. therefore, to have more reliable results, high-quality longitudinal, cross- sectional studies should be conducted to identify the confounding factors. additionally, a bigger sample size with both control and study groups is needed. additionally, controlling for pharmacological therapy and other intervention methods could be beneficial for inves- tigation into the impact of music in isolation and also in combination with other treatments. additionally, researchers should examine whether recorded music can have the same outcome as live music, which would decrease the cost for hospitals and nursing facilities. fewer studies on personalized music intervention [ , , ] demands more studies based on the culture, age, gender, dementia stage, type of dementia, and availability of treatment resources. one of the symptoms of dementia is changes in vital signs such as blood pressure, heart rate, and vitamin deficiency. this review found three papers that considered vital signs [ , , ] given that music can stabilize blood pressure and heart rate, improve appetite, sleep, and quality of life, which would be a valuable cost effective intervention. thus, more research is needed to understand if it is necessary to use various measurement scales including physiological and psychological data to track changes in the individuals’ symptoms. additionally, only two papers considered the benefits of music for family members and caregivers [ , ], which need more studies. this will help to determine if music has any restorative impact on family members and caregivers. overall, for future research, it is beneficial to consider all aspects of the methodological considerations discussed in this review including gender, control group, sample size, long- term effects, whether it is live or recorded, receptive or active music intervention or therapy, personalized or selected music by caregivers or music therapists. furthermore, combining music treatment with other activities that involves both pwd and their family or caregivers may be beneficial, along with targeted pharmacological treatments. funding: this research received no external funding. conflicts of interest: the authors declare no conflict of interest. neurol. int. , appendix a table a . summary of studies on music intervention for dementia-related diseases. author outcome focus area dementiaalzheimer’s intervention details & measurement frequency no. participants control group (cg)/ music therapy (mt) study environment & conductor measurement method/results moore, [ ] apathy, agitation, andappetite early to severe dementia weeks ( min, min before lunchtime), twice a week) recorded familiar music or physical activity (seated chair exercise and music listening) music intervention pre, post data (mt and cg) residential aged care facility research assistant measurement scales: frontal systems behavior scale, cohen–mansfield agitation inventory (cmai) results: significant changes in apathy and dietary intake but no change in agitation or eating ability raglio et al., [ ] behavioral symptoms severe dementia weeks ( sessions in a month, for min, one-month washout) music therapy group mt ( people in a group) ( : mt, : cg) residential aged care facility facility staffs measurement scales: mini-mental state examination (mmse), barthel index and neuropsychiatry inventory (npi) results: a decline in behavioral disorder, improve in delusion, agitation, and apathy sung et al., [ ] anxiety dementia weeks ( min twice a week) recorded preferred music music intervention pre, end of each week data ( : mt, : cg) residential aged care facility facility staffs measurement scale: rating anxiety in dementia (raid) result: lower levels of anxiety cook et al., [ ] qol and depression dementia weeks ( min for times in a week) active, personalized, live music, reading activity music intervention pre, during, post data (reading and music groups) residential aged care facility musicians measurement scales: evaluation of dementia quality life (dqol), geriatric depression scale (gds) results: a higher level of midpoint qol, increase in self-esteem and decrease in depression level lin et al., [ ] agitation dementia mt(twice a week, min mt for weeks) group mt, active (rhythmical music and slow-tempo instrumental activities, singing, listening, glockenspiel, musical activities and traditional holidays, music creator) music intervention pre, middle, end, one month after mt data ( : mt, : cg) residential aged care facility facility staffs measurement scales: cmai, generalized estimating equations (gefs) results: reduction in agitation and physical aggressive behavior after beginning mt, reduction in verbal aggressive behaviors only in the middle of mt stern et al., [ ] recognition ability alzheimer’s min unfamiliar childhood songs, song lyric or spoken version visual stimuli music intervention during data ( : alzheimer’s, : healthy) residential aged care trained musician measurement scales: anova memory test results: no differences between genders, healthy individuals had better recognition ability than patients with alzheimer’s ho et al., [ ] behavior dementia weeks (twice a day, during meal time) recorded calming music music intervention pre, post (m: , f: ) hospital-based residential aged care facility researcher measurement scale: cmai result: decline in agitation nair et al., [ ] physical aggressiveness, verbal abuse, agitation, wandering and inappropriate sexual advances dementia weeks (for h) recorded and baroque music music intervention pre ( weeks), during ( weeks), post ( weeks) (mt and cg) residential aged care facility facility staffs measurement scale: behavior observation results: listening to baroque music has a negative effect on patient behaviors, a more behavioral disturbance was observed between experimental groups than the control group. neurol. int. , table a . cont. author outcome focus area dementiaalzheimer’s intervention details & measurement frequency no. participants control group (cg)/ music therapy (mt) study environment & conductor measurement method/results hanser et al., [ ] mood and psychological state dementia – sessions favorite music music therapy pre, during, post data residential aged care facilitycaregiver measurement scale: visual analog scale (vas) results: both patients and caregivers have a higher level of relaxation, happiness, and comfort after mt terworth & probst, [ ] behavioral and psychological symptoms mild to moderate dementia months group mt ( – patients), active(singing, playing an elementary musical instrument, listening to biography of music and playing game (word-association, puzzle)) music therapy pre, post data (mt: (m: , f: ), cg: (m: , f: )) residential aged care facility caregivers measurement scales: mini-mental status test (mmst), global deterioration scale neuropsychiatric inventory (npi), gds, inventory to assess communication, emotional expression and activity in dementia (icea-d) results: reduction in agitation, aggression, apathy, and anxiety beside an improvement in communication, emotional expression janata, [ ] agitation and depression moderate and severedementia weeks ( h for several times in a day) recorded and customized music (widespread and frequent personalized music) music intervention pre, post data ( : f, : m, : mt, : cg) residential aged care facility music therapist measurement scales: cmai, npi, cornell scale for depression in dementia (csdd), mmse results: reduction in agitation and depression level of patients vink et al., [ ] agitation dementia months ( min twice a week) group mt, favorite music or recreational activities music therapy daily, post data ( : mt, : recreational activities) residential aged care facility trained music therapist measurement scales: cmai results: decline in agitation level during listening to music but after music intervention agitation comes back vleuten et al., [ ] quality of life, communication skills and mental well-being mild and severe dementia min (one or a few songs) intimate live music group therapy ( patients in each group) music intervention post data residential aged care facility professional singers measurement scales: behavior observation results: improvement in human contact, communication skills, observing more positive emotions and less negative emotion baker et al., [ ] anxiety, depression, spousal relationship dementia weeks ( – min sessions per week) active, familiar/preferred/quiet music music intervention pre, post data couples (m: , f: ) homecaregivers measurement scales: gds, geriatric anxiety inventory (gai), mutual communal behaviors scale (mcbs), positive aspects of caregiving questionnaire (pacq), npi results: improve spouse relationship, satisfaction, enjoyment, and well-being of caregiver, and boost the mood of couples sakamoto et al., [ ] behavioral and psychological symptoms advanced dementia weeks ( min for once a week) passive/active, preferred music music intervention pre, during, post data ( groups: cg (f: , m: ), passive (f: , m: ), active (f: , m: )) residential aged care and dementia hospital music facilitator measurement scales: nerve index and faces scale behavioral, behavioral pathology in alzheimer’s disease (behave-ad), heart rate (hr) results: improve in emotional states (both short and long term), more improve in bpsd among active mt group neurol. int. , table a . cont. author outcome focus area dementiaalzheimer’s intervention details & measurement frequency no. participants control group (cg)/ music therapy (mt) study environment & conductor measurement method/results park, [ ] agitation dementia session ( min twice a week before peeking of agitation) favorite music music intervention pre, during, post data residential aged care facility facility staffs measurement scale: cmai results: decline in agitation level while listening to music but after music intervention agitation comes back gold, [ ] mood and behavior advanced dementia months (once in a week) active, live music music therapy days after each mt session, end of mt sessions hospital researcher measurement scales: caregiver notes (observation) result: out of patients showed positive changes chu et al., [ ] depression and cognition dementia sessions ( min twice a week) group therapy, active music therapy pre, middle, end, post data (mt, cg) residential aged care facility facility staffs measurement scales: chinese version of c-csdd and salivary cortisol, the chinese version of the mmse for measuring cognitive function results: reduction in depression level, improvement in cognitive function eggert et al., [ ] behavioral changes alzheimer’sdementia image and music: – weeks, wash out: weeks, image and music: weeks ( . h per week) group therapy music intervention pre, post data residential aged care facility facility staffs measurement scales: individualize dementia engagement and activities scale tool, montreal cognitive assessment, cmai results: reducing the behavioral disorder raglio et al., [ ] behavioral and psychological symptoms (depression, anxiety, apathy, and cognitive) moderate to severe dementia week ( music min twice a week) active, individualized music music intervention pre, post data ( groups, cg, mt, and individualized listening to music) residential aged care facility facility staffs measurement scales: npi, csdd results: no significant changes in behavioral and psychological symptoms schall et al., [ ] communication behavior andemotional well-being advanced dementia sessions for months ( cycles of music for – min) active/passive, individual video graphed music music intervention pre, during, post data homecaregivers measurement scales: npi, the codem instrument for assessing communication behavior, the positive response schedule for severe dementia (prs) for assessing well-being, the observed emotion rating scale (oers) for rating positive and negative emotions, results: improvement in communication skills, well-being, and expressing more positive emotions hsu et al., [ ] well-beingdementia symptoms dementia months ( min music once a week) active, well-known songs music therapy pre, during, end, post data (mt, cg) residential aged care facility music therapist measurement scales: npi for nursing homes for measuring dementia symptoms, dementia care mapping (dcm) for the well-being results: physiological data heart rate and skin conductance, skin temperature and bodily acceleration, decrease in npi for mt and increase in npi for cg after months, improvement in the well-being of mt and decline in the control group, improve in the interaction between patients and caregivers neurol. int. , table a . cont. author outcome focus area dementiaalzheimer’s intervention details & measurement frequency no. participants control group (cg)/ music therapy (mt) study environment & conductor measurement method/results ray and mittelman, [ ] agitation, wandering and depression moderate and severe dementia min– min preferred music, live, active group therapy ( – patients) music therapy pre, during, post data (each for weeks) (f: , m: ) residential aged care facility music therapist measurement scales: anova results: a decrease in agitation and depression, no change in wandering melhuish et al., [ ] qol semantic and frontotemporal dementia – min once a week active (music from the s to s), dance/movement music therapy (m: , f: ) ( : moderate dementia, : advanced dementia) residential aged care facility caregivers measurement scales: interpretative phenomenological analysis (ipa) results: help caregivers to discover patients’ skills and feeling, improve the connection between caregivers and patients tang et al., [ ] apathy, cognition dementia weeks ( min for times in a week) active, group therapy, playing a musical instrument, nostalgic music (nostalgic red songs, nostalgic nursery rhymes, and nostalgic cantonese opera) music intervention (m: , f: , :cg, : mt) residential aged care facility research assistant measurement scales: apathy evaluation scale (aes), mini-mental state examination (mmse) results: decrease in apathy, no changes in cognition garrido et al., [ ] psychological and behavioral symptoms (depression, anxiety, apathy, and cognitive) dementia ~ min ( min baseline – playlist (contain – song) each – min, – min between each playlist) recorded personalized/preferred music (belong to s– s) music intervention pre, during data residential aged care facility facility staffs measurement scales: activation of facial action (webcam observed emotion rating), oerc results: people with high levels of depression and with symptoms of alzheimer’s type of dementia demonstrated increased levels of sadness, people with low depression but high levels of apathy demonstrated the highest behavioral evidence of pleasure during music listening, although behavioral evidence declined with the severity of cognitive impairment cheung et al., [ ] cognitive functions, depression, and anxiety moderate dementia weeks activities (music-with-movement(mm), intervention music listening(iml), and social activity(sa)) music intervention pre, middle, end data ( groups; mm: , iml: , sa: ) residential aged care facility facility staffs measurement scales: mixed multivariate analysis of variance (manova), raid scale for measuring anxiety, gds, mmse, fuld’s object memory evaluation (fome), modified fuld verbal fluency test (mvft), digit span test (dst) for measuring adult intelligence results: improvements in memory and depressive symptoms gulliver et al., [ ] well-being, qol, mental health (depression) alzheimer’s dementia – min for weeks music engagement program based on patients age, culture, and preference music engagement program pre, post data residential aged care facility facility staffs measurement scales: visual analogue survey (vas) based on wonca diagram for feeling and social activities, cornell scale for depression in dementia and quality of life through measuring factors of mood-related signs result: improvement in well-being and mental health neurol. int. , table a . cont. author outcome focus area dementiaalzheimer’s intervention details & measurement frequency no. participants control group (cg)/ music therapy (mt) study environment & conductor measurement method/results cheung et al., [ ] agitation moderate dementia weeks ( min twice a week) activities (music with movement(mm), music listening(ml), social activity(sa)), preferred music music intervention pre, post data ( groups: mm, ml, sa) residential aged care facility facility staffs measurement scales: a chinese version of the cmai results: no statistically significant changes in agitation among the three groups, only short-term impact during the mt kwak et al., [ ] agitation, cognition dementia/alzheimer’s weeks preferred recorded music music intervention pre, during, and post data residential aged care facility facility staffs measurement scales: cmai, npi-nh result: no statistically significant changes in memory neurol. int. , references . world health organization. global action plan on the public health response to dementia – ; licence: cc by-nc-sa . igo; world health organization: geneva, switzerland, . . prasad, d. the impact of music therapy on the cognitive, behavioural and psychological symptoms of dementia: a literature review; arts and sciences program level iv; mcmaster university: hamilton, on, canada, . . sabanovic, s.; bennett, c.c.; chang, w.-l.; huber, l. paro robot affects diverse interaction modalities in group sensory therapy for older adults 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objective of this review was to scope the literature on nature-based interventions that could be conducted in institutional settings where people reside full-time for care or rehabilitation purposes. systematic searches were conducted across cinahl, medline, criminal justice abstracts, psycinfo, scopus, social care online and cochrane central. a total of studies (reported in articles) were included. four intervention modalities were identified: gardening/therapeutic horticulture; animal-assisted therapies; care farming and virtual reality-based simulations of natural environments. the interventions were conducted across a range of settings, including inpatient wards, care homes, prisons and women’s shelters. generally, favourable impacts were seen across intervention types, although the reported effects varied widely. there is a growing body of literature on nature-based interventions that could be applied to a variety of institutional settings. within most intervention types, there is sufficient research data available to perform full systematic reviews. recommendations for future systematic reviews are offered. there is extensive evidence that contact with nature has a range of beneficial effects for human health and wellbeing. these include positive effects for specific groups such as people with dementia (e.g. de bruin et al, ), clinical depression (gonzalez et al, ) and cancer (cimprich and ronis, ), as well as more general impacts (e.g. bowler et al, ). using public health data for the whole of england, mitchell and popham ( ) showed that access to green spaces significantly reduced levels of poor health associated with income deprivation. a recent review of research on urban green spaces for the world health organization concludes that they have a positive effect on health, especially for children, pregnant women, senior citizens and economically deprived communities more generally (who, ). evidence increasingly indicates that active engagement or connection with nature is especially valuable (mayer et al, ). however, even passive exposure to nature has been shown to potentially have a positive effect (e.g. honold et al, ; van den berg et al, ). this substantial evidence for the benefits of contact with nature has led to the growth of nature-based programmes run by governmental, private or third sector organizations in many parts of the world. such programmes are diverse in their design, settings and target populations. some of the main types are green exercise activities (including “exercise prescription” programmes) (e.g. pretty, peacock, sellens & griffin, ; swinburn, walter, arroll et al, ), therapeutic horticulture (e.g. sempik, rickhuss & beeston, ), wilderness or wild-nature based activities (e.g. clark, marmol, cooley & gathercoal, ) and programmes focused on encounters with animals - such as care farms (e.g. de boer, hamers, zwakhalen et al, ), animal-assisted therapy and animal- assisted activity (e.g. majic, gutzman, heinz et al, ). individual programmes within these categories may be targeted at people with specific health/wellbeing problems or be open to anyone who feels they may benefit from involvement. similarly, programmes vary in whether they take referrals from health and social care agencies, attract participants through self-referral, or a mixture of the two. given this diversity in nature-based programmes, it can be difficult to gain an overview of the literature in terms of what kinds of intervention may be helpful in what settings to what types of people. there have been numerous evidence reviews and syntheses in the last five or so years, assessing current knowledge in relation to different kinds of nature-based interventions. some have focused on particular types of intervention across a range of potential areas of impact, such as horticultural therapy (kamioka, okada, tsutani et al, ), animal-assisted therapy (nimer & lundahl, ), gardening (clatworthy, hinds & camic, ) and conservation activities (husk, lovell, cooper, stahl- timmins & garside, ). others are focused on specific target groups, such as people with dementia (whear, coon, bethel et al, ), schizophrenia (liu, bo, sampson et al, ), troubled adolescents (harper, russell, cooley & cupples, ), older adults (wang & macmillan, ) and people in prison (cooke & farrington, ). however, it may be that these interventions could be helpful for other groups that have not yet been identified in previous systematic reviews. while the reviews and syntheses cited above provide some very useful insights, we are not aware of any attempts to scope the body of literature on nature-based interventions that could be used in institutional settings. people residing in institutional settings (ie. prison inmates, hospital inpatients, and care home residents) typically have reduced opportunities to engage with the natural world – and indeed reduced agency more broadly. consequently, nature-based interventions could be of particular relevance to these groups. a scoping review in this area helps to hone future systematic review designs, and identify key questions for primary research studies to address. we would also argue that the specific institutional contexts in which many interventions take place – whether they be schools, hospitals, prisons, workplaces or any other setting – need to be considered when seeking to understand therapeutic processes. the mechanisms through which engagement with nature-based interventions are beneficial may differ substantially in different contexts. the review we present in this article therefore focuses on evidence from both quantitative and qualitative studies, to address the following questions: . what types of nature-based intervention are currently being used to support wellbeing in institutional settings? and which other modalities could be feasible? . are particular intervention modalities more commonly used in particular settings? . is there evidence that nature-based interventions in institutional settings impact on the health and wellbeing of those who participate in them? . if so, has the literature identified specific therapeutic mechanisms that may be worth examining in future primary and secondary research? methods literature scoping approach a scoping review was chosen as the most appropriate way to address our aims. our research question concerned the impact of nature-based interventions on health and wellbeing in institutional settings. institutional settings are here defined as any setting in which people reside full-time for care or rehabilitation purposes. because this is a complex area that has not been comprehensively reviewed before, an approach was needed to clarify key concepts (eg. what types of nature-based interventions are available? what counts as an “institutional setting”? and what outcome and process evaluations of nature- based interventions have been used?). scoping reviews can enable investigators to map out a field of research but in addition to mapping reviews they begin with specific concerns to identify gaps in the literature for subsequent primary studies and determine appropriate questions for full systematic reviews (armstrong, hall & waters, ). although scoping reviews do not systematically assess the quality of studies or formally synthesise findings, the review methods should be clear and reproducible. to this end, we followed the five stage process developed by arksey and o’malley ( ): ) identifying the research question; ) identifying relevant studies; ) study selection; ) charting the data; and ) collating, summarizing, and reporting the results. search strategy the cochrane library was searched for existing reviews, resulting in a total of hits where, after screening, only cochrane reviews and other reviews were considered relevant. in addition, other reviews were later found through manual searches. none of the identified reviews specifically addressed benefits and adverse effects of nature-based interventions for people residing in or being referred to institutional environments. an initial list of keywords for intervention types was based on two existing systematic reviews in the subject area which explored general health benefits of participation in environmental enhancement and conservation activities (husk et al., ) and nature-assisted therapy (annerstedt & waehrborg, ), neither of which specifically focused on institutional settings. a wide range of intervention-related keywords was drawn up to include any type of nature-based intervention that is considered feasible to conduct with an adult population in an institutional setting, including varieties of therapeutic horticulture, gardening activities, animal-based therapies, outdoor and wildlife interventions. however, this extremely wide initial pilot search resulted in a total . hits in cinahl alone, requiring us to significantly narrow down the scope of the search to increase specificity. as a result, subsequent searches combined (and) a wide range of interventions with the condition of an institutional or hospital-based setting and (and) relevant health outcomes. the final search strategy is presented in appendix . the following databases were searched between march and april : cinahl, medline, criminal justice abstracts, psycinfo, scopus, social care online, cochrane central. search results were saved and imported into an endnote database. table shows the number of ‘hits’ retrieved from each database. table about here. in addition, reference lists of all included studies were screened for further relevant studies but given the limited resources and specific purpose of this scoping review, we concentrated on studies that were thought to add to the breadth of electronic hits to give a better overview of settings and intervention types that are currently being used. a total of additional studies were retrieved and included for data extraction. inclusion criteria and data extraction only peer-reviewed journal articles published in english were considered in this review. included target populations were any groups of adult participants who are based in an institutional setting, or who were taking part in nature-based interventions for care or rehabilitation purposes that would be feasible to conduct in institutional settings. although this meant not all the study samples were based in institutional settings, this inclusion criterion was applied to gain a wider perspective on interventions of possible use in such contexts. such interventions included:  therapeutic horticulture and ecotherapy  offenders and nature (o&n) schemes – e.g. habitat restoration, path maintenance and general forestry  animal-based therapies – pet facilitated therapy (pft), care farms, prison-based animal programs (paps)  outdoor conservation activities – e.g. litter picking or tree planting  gardening-based activities – e.g. guided garden walks, supervised allotment gardening conversely, studies which could not realistically be conducted in an institutional environment and general experiences of nature in an open setting, such as natural environment therapies, wilderness-based and adventure programmes, were excluded. likewise, exercise and sport-based interventions taking place outdoors were excluded as well as interventions primarily aiming to increase physical wellbeing. all full-text screening was performed independently by two reviewers who met regularly to discuss emerging conflicts. two reviewers undertook data extraction and met regularly to discuss emerging issues, progress and potential conflicts. for all studies, data were extracted into standardised tables, covering: type of institutional setting; target population; participants; study design; methods; intervention details; key findings; and conclusions. for qualitative studies, we summarised main themes and key concepts based on the reporting and included quotes, while for quantitative designs measurements in group differences and effect sizes were extracted where reported. no duplicate entries were created for any studies that employed more than one intervention type. data collation approach individual studies were analysed in a three-part process designed to address the review aims. first, similarities and differences among different interventions were noted; second, the common methodologies used to evaluate each intervention type were noted; finally, general patterns in study findings were noted and narratively summarised. for this purpose, studies were grouped and tabulated into the following intervention types: ) garden and horticulture-based interventions, ) animal-based interventions, ) care farms; and ) simulated nature-based interventions. it is important to note that these categories are deliberately broad for the purposes of this scoping review. future systematic reviews and meta-analyses should aim for a more fine-grained analysis of specific intervention subtypes, because different types of intervention within each class are likely to have different therapeutic mechanisms – for instance, an animal-based intervention that involves training service animals is likely to produce different effects to an intervention where companion animals are brought into an institution. findings overview of studies figure shows the study selection process. the database searches yielded hits, and a further articles were identified through manual searching. the majority of articles were excluded at title/ abstract stage, and of screened full-texts, a total of studies (reported in articles) were included. there were almost twice as many quantitative designs (n= ) compared to qualitative studies (n= ) with only employing a mixed- methods design. figure about here. the reported nature-based interventions were conducted in a range of different settings:  in a hospital or psychiatric setting  in rehabilitation or wander garden settings  in nursing or retirement homes  at care or animal farms  in prisons  at women’s shelters  at other institutions  in a closed laboratory setting target populations across all included studies (n= ), total participant population was approximately , with some studies not reporting or only inadequately reporting population figures. a third of all studies (n= ) were conducted with mental health patients or those referred for a mental health problem. the second biggest target group was that of elderly citizens and nursing home residents (n= ). table shows the specific settings and target populations studied within each type of nature-based intervention. it can be seen that people with mental health problems were the most commonly targeted population for both garden- based/ horticultural therapies (n= / studies), and for care farms (n= / studies). by contrast, animal assisted therapy was most commonly offered to hospital inpatients (n= / studies), and virtual reality based interventions have not yet been studied in an applied setting. more detailed descriptions of the target populations and settings are available in the online tables s , s , s , and s . table about here. gardening and horticulture-based interventions studies used some form of gardening or horticultural intervention, almost half of which (n= ) were also set in a garden space. were conducted in nursing homes, in a hospital setting, at other institutions and only in prisons and on care farms respectively. there was a balance between quantitative (n= ) and qualitative (n= ) designs, with studies using a mixed-methods approach (table ). among the quantitative studies, a range of designs were reported, including controlled (n= ) and uncontrolled (n= ) before-after studies, rcts (n= ), cross-sectional surveys (n= ), quasi-experiments (n= ), one case study, and one retrospective cohort study (table ). the majority of the interventions in this class were therapeutic gardens. however, there was substantial variation in terms of the level of active engagement required of participants – some of the interventions comprised only an attractive garden for participants to wander around (detweiler, ; edwards ; heath ;ottosson ; rappe, , ), while others involved varying levels of engagement with structured gardening activities ranging from flower arrangement and seed nursing, to conservational activities (see online table s for additional details). the outcomes of interest in the quantitative studies typically included measures of quality of life, health-related quality of life, and activities of daily living (see online table s for a full description of measures). some studies also included objective measures of physical health (austin ), and biomarkers for inflammation (bay-richter, ) and stress (ottosson, ). the findings of the quantitative studies generally showed a trend toward improvement with horticultural and garden-based therapies. however, the effect sizes for improved outcomes were often modest, and many studies did not find statistically significant improvements or between-group differences on primary and secondary outcome measures (online table s ). of particular note, the three rcts did not report significant between-group differences on most outcomes, although bay-richter ( ) did note a reduction in inflammatory biomarkers in the horticulture group. it may be that horticultural therapy has a long-term benefit in reducing inflammatory responses, though this would need confirming in larger studies with a longer follow-up. among the qualitative studies, all collected some data through semi-structured, in-depth interviews or focus groups with participants, while ten studies combined these with some form of participant observation to gain additional insights into experiences of the gardening activities. the majority of studies used a structured thematic analysis approach, four studies used a grounded theory approach, and two others drew on some form of phenomenology. the exact type of intervention varied between studies and was rarely reported in detail, ranging from general gardening activities and growing produce to supervised garden walks and more recovery-oriented approaches in combination with arts therapy, craft-making and relaxation techniques (see online table s ). across the case studies there was considerable overlap between emerging themes, frequently stressing the benefits from community and togetherness gained by sharing the experience of horticulture with people in similar situations as well as a sense of mutual nurturing with improved resilience from the contact with nature. overall, gardening and horticulture were perceived as beneficial to both physical and mental wellbeing, and the studies identified a range of mechanisms through which therapeutic benefits were gained. these included: purposeful activities to improve mood and to escape life’s pressures, learning new skills, making new social contacts, and being part of a group (barley, ; adevi, ; eriksson ). another recurring theme was the value of sensory stimulation and physical engagement in the gardens (see adevi, ) where in addition to gaining increased autonomy and self-confidence through growing and harvesting plants and fruit, participants also appreciated the aesthetic experience including bright colours and smells with reported beneficial effects to their emotional wellbeing. however, parr ( ) also reported that participants encountered several difficulties resulting partly from a lack of training and being under the effects of medication where conflicts arose between participants when having to perform hard work in bad weather conditions. while providing valued aesthetic and visual improvements to public places, there are dangers of exploitation where other parties benefit more from the participants’ unpaid labour. overall however, the studies emphasised the therapeutic potential of garden-based interventions for mental and physical health as well as wider benefits to the community (online table s ). animal-assisted interventions thirty-three studies of animal-assisted therapy (aat) were identified, including quantitative (n= ), qualitative (n= ), and mixed-method (n= ) designs. of the quantitative studies, a majority of pretest-posttest or quasi-experimental designs was seen (n= ), as well as six randomised controlled trials. the majority of the interventions were carried out in hospital settings (n= ), as well as nursing homes (n= ), prisons (n= ), and one hospice (table ). the outcomes of interest in these studies predominantly comprised measures of self- reported mood (eg. the brief symptom inventory, the profile of mood survey, and the trait- state anxiety instrument), and physiological proxies for stress, such as cortisol levels (see online table s for full details). additionally, several studies examined the types of social interaction facilitated by the presence of an animal. generally, favourable improvements in mood and increases in social interaction were observed throughout the corpus of literature (online table s ). however, several studies reported a lack of significant between-group differences on key measures (johnson, ; stasi, ). the qualitative studies identified a number of common psychosocial mechanisms through which aat provided benefits, such as taking responsibility for an animal (cushing, ; mercer, ; rossetti, ), and stress reduction (katsinas ; mercer, ; sockalingham, ; turner, ; online table s ). care farms and simulated nature interventions eight studies were conducted at care farms, with the majority (n= ) using exploratory qualitative designs, followed by quantitative and mixed-methods design. the qualitative studies (ellings, ; ellingsen-dalskau, ; hassink, ; iancu, ; pedersen ) all conducted semi-structured interviews or focus groups with participants on the farms to explore and interpret their experiences using thematic analysis. hassink also included other groups of farm workers and farmers to compare their experiences with those of the clients (online table s ). across these studies, participants valued their stay at the farms and particularly appreciated the different farming activities (including fetching feed, cleaning, milking and feeding) and spending time with the animals and farmers which gave them both a sense of daily routine and renewed confidence and resilience. participants also benefited from feeling appreciated by farmers and animals alike, while being treated as equals in a tranquil community (hassink, ) which also helped them stay away from areas where they were tempted by drugs and alcohol (ellings, ). overall, the daily work routines, nature-based environment and contact with farmers and animals were found to promote autonomy and mental health and support people’s transition back into work. however, in their focus groups ellings ( ) found that care farms only had limited effects in achieving longer-term occupational change (online table s ). using video recordings of the participants’ daily activities and interactions on the farms in addition to before-after psychiatric measures, berget ( ) and pedersen ( ) both found that occupational therapy with farm animals and performing challenging and complex work tasks at the dairy farm can result in a decline in depression, and state-anxiety symptoms. work intensity correlated with increased self-efficacy (r- . , p<. ) and decreased anxiety (r- . , p<. ) as observed by berget ( ), while depression scores on the bdi-ia scale in pedersen ( ) decreased from . (se= . ) at the start of intervention to . (se= . ) at the end, as anxiety levels also decreased by . points and generalized self-efficacy scores were improved from . (se= . ) to . (se= . ). pedersen ( ) also found significant negative correlations between anxiety and farming activities such as milking procedures (r = – . , p = . ) and moving animals (r = – . , p = . ). in their mixed methods study, hine ( ) found that after spending time on a care farm, participants’ self-esteem (rse) increased by . points (p<. ) with significant improvements on indicators of mood (anger, confusion, depression, fatigue, tension, vigour, all, p<. ). the potentially beneficial effects of these activities for participants’ mental health clearly add to the general appreciation of the natural setting and social interactions found in the qualitative studies (online table s ). virtual reality-based three studies of virtual reality (vr)-based simulations of natural environments were identified (alvarsson, ; annerstedt ; de kort, ). all three were experimental, lab-based studies which compared different types of natural environment simulations with respect to objective and/or self-reported stress reduction. alvarsson compared different kinds of natural or non-natural noise simulation in a simulated natural environment; annerstedt compared natural sounds vs no sounds, while de kort compared different levels of immersion ( ” vs ” screens) on recovery from stress (online table s ). alvarsson ( ) and annerstedt ( ) both found that the addition of natural sounds to virtual environments could facilitate faster recovery from stress, while de kort ( ) found that increased immersion could enhance the restorative potential of a simulated natural environment (online table s ). discussion nature-based interventions offer a promising way to support the wellbeing of a range of groups with varied occupational, clinical and social needs – and this may be particularly important for people based in institutional settings, who typically have reduced access to nature in everyday life. to our knowledge, this is the first scoping review of nature-based interventions in institutional settings to become available, and we have described a large body of literature across a variety of populations and contexts. based on our findings, we have been able to identify a number of important gaps in the literature. particularly, we have identified a number of challenges and questions for future systematic reviews and primary studies to address, which we will now discuss. first, it was notable that different intervention types were more popular in different institutional settings, and with particular client groups. for instance, care farms were typically conducted with clients with occupational needs, such as re-entry into paid work and overcoming drug and alcohol addiction. the structured, work-based format of care farm interventions may be particularly well suited to supporting such clients. therapeutic horticulture was often applied in residential care settings, and may be a useful therapy modality for interventions that aim for general improvements in wellbeing. animal-assisted therapy was particularly popular in prison settings, and, again, may be well suited to the context and desired outcomes for this group – such as taking responsibility for an animal’s wellbeing, and learning how to care for and train them. the qualitative findings for each therapy modality do suggest the interventions have been matched to the context in such a way, and it may be worthwhile in future research to compare different therapy modalities in the same setting, and to explore whether differing psychosocial mechanisms of benefit can lead to different types of outcome. however, comparing intervention types is complicated by the fact that, even within each therapy modality identified in this review (horticulture and gardening-based therapy; animal-assisted therapy; care farming; and virtual reality-based therapy), there were often substantial divergences in activities, delivery, and intensity. future systematic reviews would benefit from examining the effects of specific types of nature-based intervention within these categories separately. broadly speaking, we would suggest the following classifications might be useful to obtain more fine-grained analyses of different intervention modalities:  gardening and horticulture-based therapies: . therapeutic wander gardens (ie. gardens based on-site of institutional settings that require no active input from participants); . therapeutic crop and plant growing (comprising planting and plant caring activities); . arts and commercial-based horticulture (using the products of therapeutic growing to create artistic objects, food, and produce for sale at local markets).  animal-assisted therapies: . time-limited, structured visits from therapeutic animals (eg. bringing dogs into care homes for a weekly allotted time); . animal adoption (eg. providing a canary for residents of a facility to care for); . animal training programmes (eg. training service dogs)  care farming: . primarily arable farming; . primarily livestock farming; . mixed farming. in terms of future systematic reviews, several modalities of nature-based interventions have already been examined, notably animal-assisted therapy in prisons (cooke & farrington, ), gardens for supporting wellbeing among people with dementia (whear et al. ), gardening for people with mental health difficulties (clatworthy et al. ), and horticultural therapy for various illness outcomes (kamioka et al. ). our findings suggest that additional systematic reviews of animal-assisted therapy in hospital and care home settings, and of care farming for occupational rehabilitation, may be warranted. additionally, future reviews will likely need to incorporate a range of evidence types to gain an informative picture of these interventions. for example, the evidence for care farming typically comes from detailed qualitative field studies, and so may be well suited for a qualitative metasynthesis, which may be helpful for gaining insights about the therapeutic mechanisms of care farming that go beyond the findings of the original studies. in terms of garden-based and horticultural therapies, a wide range of qualitative and quantitative evidence is available, and a realist review approach may be of use for understanding these interventions. realist reviews address the question of what works for whom in what context (wong, greenhalgh, westhorp, buckingham & pawson, ), and so may be able to unpick the linkages between the qualitative and quantitative evidence pertaining to such interventions. the evidence for virtual reality-based simulations of nature is currently limited to lab-based studies, and we would advise interested researchers to wait until further evidence becomes available before attempting a systematic review of this type of therapy, whereas more original primary research in this area is clearly required and encouraged. additionally, future systematic reviews of any therapy modality will have substantial complexity to manage in terms of the duration and intensity of therapy. this scoping review has identified a wide range of empirical literature on nature- based interventions to support wellbeing. due to the time and resource limitations of the project, we have certainly not included all the available literature for each therapy type, and we had to make a trade-off between sensitivity and specificity in our searching strategy. additionally, as is typical for a scoping review, we have made no attempt to formally assess the quality of the included literature, nor to synthesise findings from individual studies. consequently, definitive conclusions about the efficacy of these therapies is beyond the scope of our study. however, the review benefited from a systematic search, a thorough process for including and excluding studies involving two reviewers, and detailed extraction of key aspects of the methods and findings across this body of literature. this enabled us to identify the overall pattern of evidence for these types of interventions, to examine the contexts in which they are typically implemented, and to identify important questions for subsequent primary and secondary research to address. figure . study selection flow chart. studies identified from electronic search (n= ) articles identified from other sources (n= ) total articles for screening (n= ) excluded at title or abstract stage (n= ) full-texts screened (n= ) included articles (n= ) excluded at full-text stage (n= )  wrong publication type (n= )  wrong intervention or study design (n= )  duplicate (n= )  not english (n= )  wrong population (n= )  wrong setting (n= ) table . databases searched and hits identified. database searched in hits cinahl title, abstract, full text medline (via cinahl) title, abstract, full text criminal justice abstracts (via cinahl) title, abstract, full text psycinfo any field scopus title, abstract, keywords social care online any field cochrane central trials register title, abstract, keywords total table . study contexts, settings, target populations and designs gardening/ horticulture (n= ) animal-assisted therapy (n= ) care farms (n= ) virtual reality-based (n= ) population any hospital inpatients (including rehabilitation clinics) - - any hospital outpatients - - - nursing / residential home residents - - people with dementia - - students - prison inmates - - domestic violence survivors - - people with mental health or substance abuse problems - other - - - setting hospital/ rehabilitation centre - - nursing/ retirement home - - garden - - - prisons - - laboratory - - - farm - - gardening/ horticulture (n= ) animal-assisted therapy (n= ) care farms (n= ) virtual reality-based (n= ) women’s shelter - - - other - - design (quantitative) rct - controlled before-after study - - uncontrolled before-after study - crossover study - - retrospective cohort study - - - quasi-experiment - cross-sectional/ survey - - case study - - design (qualitative) thematic analysis - - phenomenology - - grounded theory - - - ethnography/ observational - - other - mixed method (any) - - - supplementary table s . study settings, target populations, and participants (therapeutic gardening/ horticulture) author year setting target population participants therapeutic gardening/ horticulture adevi alnarp rehabilitation garden in sweden people with stress and exhaustion disorders interviews and focus group with caregivers, observations with participants adevi alnarp rehabilitation garden people with stress and exhaustion disorders participants female, male aslan outdoor environment recovery from substance abuse interviews, n= ( female, male) observation (n= ) austin senior centre in new york senior citizens n= ( female, male) age: . (sd= . ) barley sydenham garden horticultural and participatory arts rehabilitation project in south london people with severe mental and physical health problems n= ( female, male) age: between and bay-richter not reported patients with a mood- or an anxiety disorder not reported cerwén rehabilitation garden in alnarp, sweden patients with stress-related mental disorders n= ( females, males) age: - detweiler dementia wander garden stroke patients without dementia n= (male) age: edwards magnolia house therapeutic garden elderly care residents with dementia n= ( female, male) age: - eriksson vocational rehabilitation clinic in sweden clients with stress-related disorders n= (former clients, female, male) age: ( - ) n= (team members, female, male) age= ( - ) eriksson vocational rehabilitation clinic in sweden women with stress-related ill health who are on sick leave n= all female age: galvin wholesale shrub nursery people with mental health problems n= ( male, female) age: ( - ) gigliotti adult day people with dementia n= author year setting target population participants therapeutic gardening/ horticulture service (ads) program age: ( - ) gonzalez a, b urban green care farms adults diagnosed with clinical depression study : n= ( male, female) age: . study : n= ( male, female) age: . heath care facility for the elderly elderly residents and families n= ( male) hewitt horticultural garden and dementia hospital garden people with young-onset dementia n= jagger community learning garden students, faculty staff and wider community n= jonveaux healing garden in nancy, france dementia patients, visitors and caregivers survey n= (nursing homes) interviews n= kim three hospitals in seoul, korea stroke patients with hemiplegia n= ( female) age: (treatment group only) duration of hemiplegia from months to > months lee women’s shelter in korea domestic violence survivors n= women intervention; control age: nr lidén alnarp rehabilitation garden, sweden women on long-term sick leave n= (all female) age: - luk nursing home nursing home residents with dementia n= ( female, male) age: . (sd= . ) o'brien meanwhile wildlife garden in london referred volunteers with mental health problems n= (case study ) age: - n= (case study ) age: - ottosson nursing home in sweden residents in a nursing home n= ( female, male) age: pálsdóttir rehabilitation garden in people with stress-related mental n= ( female, male) author year setting target population participants therapeutic gardening/ horticulture alnarp, sweden illness age: - parr urban garden schemes in the uk people with mental-health problems, addiction or learning disabilities ecoworks: not reported coach house trust: - perrins- margalis clubhouse facility people with chronic mental illness n= age: na rappe nursing home in finland elderly people in institutional care n= age: ( - ) rappe nursing home in finland elderly people in institutional care n= (all female) age: ( - ) rappe gardening plot in helsinki, finland mental health outpatients n= ( male, female) age: . ( - ) raske nursing home nursing home residents n= ( male, female) age: . ( - ) renzetti women’s shelter in kentucky shelter administrators and staff n= richards patuxent institution, maximum security prison in maryland us incarcerated offenders with substance abuse history n= ( female, male) age: . ( - ) sahlin nature-based rehabilitation centre in sweden employees with stress-related mental disorders who had been on sick leave n= (rhb group, women, men) age: ( - ) sarno garden facility at rusk institute in new york individuals with acquired aphasia n= ( male, female) age: . ( - ) stein residential care facility residents with disabilities na verra rehabilitation clinic in bad zurzach, switzerland patients with chronic musculoskeletal pain n= age: . ( . — . ) währborg designed rehabilitation garden in alnarp, sweden patients referred with stress-related illness or depression n= ( female, male) age: . (sd= . ) whatley community garden in melbourne referred patients with mental health problems and staff n= (observations) n= (interviews) wichrowski the rusk institute of cardiac rehabilitation inpatients n= ( male, female) author year setting target population participants therapeutic gardening/ horticulture rehabilitation, new york zhu minhang district mental health center inpatients with schizophrenia n= ( males, females) age: . (sd= . ) *: mean (sd), unless otherwise stated supplementary table s . study settings, target populations, and participants (animal-assisted therapy) author year setting target population participants animal-assisted therapy barker inpatient psychiatry service of an urban academic medical center referred hospitalized psychiatric patients n= ( female, male) age: (sd= ) barker electro-convulsive therapy suite in academic psychiatry medical centre psychiatric inpatients and outpatients awaiting ect n= ( female, male) age: . (+ . ) beck psychiatric hospital unit psychiatric inpatients intervention group n= ( female, male) age: . (sd= . ) comparison group n= ( female, male) age: . (sd= . ) buettner oncology waiting room in a cancer center cancer patients and family members n= ( male, female) age: . ( - ) chinner -bed hospice in adelaide, australia terminally ill hospice residents time : n= ( female) age: . (range: to ) time : n= ( female) age: . (range: to ) time : n= ( female) age: . (range: to ) author year setting target population participants animal-assisted therapy chu psychiatric institution in hualien county, taiwan taiwanese inpatients with schizophrenia n= coakley hospital inpatient units hospital patients n= colombo seven elderly rest homes in veneto region of northern italy cognitively unimpaired institutionalized elderly n= ( female, male) age: . (sd= . ) cushing correctional facility in new mexico (us) inmates inmates n= age: . staff interviews n= staff questionnaires n= age: fick veterans administration medical center nursing home residents n= (all male) fournier minimum security men’s prison in virginia, usa, housing inmates prison inmates n= men ( control, intervention) age: (range: to ) mean education time . years (range: to ) haughie nhs psychiatric hospital elderly psychiatric patients ward n= ( female, male) age: - ward n= (all female) age: + hoffmann charite university medicine berlin. hospitalised patients meeting the dsm iv criteria for unipolar major depression. n= ( male) age: . + jasperson utah state prison women inmates with mental health difficulties n= age: author year setting target population participants animal-assisted therapy incarcerated for drug charges diagnosis of schizo-affective disorder johnson radiation oncology units of two hospitals cancer patients undergoing radiation therapy n= dog intervention group n= ( female, male) age: ( - ) katsinas nursing home nursing home patients with dementia n= ( female, male) age: ( - ) kovács social institute for psychiatric patients middle-aged schizophrenic patients n= ( female, male) age: . kumasaka palliative care unit nursing home patients n= ( male, female) age: . (sd= . ) le roux nerina place, an old age home in bishop lavis (capetown, south africa) elderly residents in a long-term care facility n= ( female, male) age: na lynch hospital setting at university of arkansas antepartum hospitalised women with high-risk pregnancies n= (all female) age: . (sd= . ) marr state psychiatric facility psychiatric patients n= ( male, female) age: . (sd= . ) mercer animal centre in a uk prison unit offenders and staff involved with animal programme n= ( offenders, staff) neer nursing care facility mental health facility geriatric residents n= orlandi oncology centre in italy oncology patients undergoing chemotherapy n= ( males, females) age: na perelle mixed care nursing home in westchester, new york. care home residents n= ( male, female) age: . + . rossetti psychiatric hospital in chicago behavioural health staff n= savishinsky nursing homes in upstate new york nursing home volunteers n= (patients) n= (pet visitors) n= (volunteers) sockalingam psychiatric hospital single case study of patient with n= (male) author year setting target population participants animal-assisted therapy bipolar-disorder age: stasi nursing home for elderly patients nursing home residents with chronic age-related disabilities n= age: (sd= . ) turner medium security prison for adult men male inmates inmates arrested for a variety of offences walsh women’s prison in south australia (northfield prison complex, women’s section) women prisoners n= (all female) age: . winkler nursing home in perth, australia nursing home residents and staff n= (patients, female, male) zisselman wills eye hospital geriatric psychiatry unit geriatric psychiatry inpatients with chronic age-related disabilities n= ( female, male) age: . (sd= . ) supplementary table s . study settings, target populations, and participants (care farms) author year setting target population participants care farms berget farms with animals severely ill psychiatric patients n= ( female, male) age: . (sd= . ) elings green care farm in the netherlands people with a psychiatric or addiction history n= ellingsen- dalskau care farms in norway people with mental health problems n= ( male, female) age: - hassink care farms in the netherlands client groups: severe mental health problems, youth care, frail elderly psychiatry clients n= ( male and female) age: na elderly care n= ( male, female) author year setting target population participants care farms age: na hine uk care farms care farm users for various psychosocial issues n= (pilot) iancu care farms in the netherlands users of care farms with mental disorders n= ( male, female) age: . (sd= . ) pedersen dairy farms in norway persons with clinical depression n= ( male, female) age: . ( - ) pedersen dairy farm in norway persons with clinical depression n= ( male, female) age: . supplementary table s . study settings, target populations, and participants (virtual reality) author year setting target population participants virtual reality alvarsson laboratory students n= ( female, male) age: annerstedt virtual reality laboratory of lund university students and staff with good health and no hearing impairment males with a mean age of . (sd = . ) de kort virtual natural environment in a laboratory students n= ( female, male) age: (sd= . ) supplementary table s . study design, methods, and intervention details (garedening and horticulture-based therapies). authors, year design methods intervention details garden and horticulture-based interventions adevi qualitative case study; grounded theory in-depth interviews (n= ) focus group ( * participants) participant observation ( participants over periods of weeks) garden therapy in alnarp rehabilitation centre, sweden. participants with stress/ exhaustion disorders referred by gps for a rehabilitation programme over weeks ( half-days/ week). activities include horticultural therapy, picture therapy, physical therapy and rehabilitation. adevi grounded theory semi-structured interviews (n= ) on expectations and evaluation of the rehabilitation programme. analysis via open coding and data saturation garden therapy in alnarp rehabilitation centre, sweden. participants with stress/ exhaustion disorders referred by gps for a rehabilitation programme over weeks ( half-days/ week). activities include horticultural therapy, picture therapy, physical therapy and rehabilitation. aslan applied thematic analysis semi-structured interviews (n= ); observation days; focus groups (n= ); themes developed through coding. recovery through nature programme (uk), where service users are taken to engage in conservation activities, in conjunction with conservation agencies in the uk (national trust; john muir trust, forestry commission, local parks) austin single group before-after pilot study functional health (dartmouth coop functional health assessment charts), depression (gds), and physical fitness ( - minute walk test) were taken before the gardening intervention and after weeks. senior centre in upstate new york. a garden was developed in which residents who wanted to garden were provided with space, containers filled with dirt, and plants for growing. barley qualitative study, thematic analysis semi-structured interviews with open-ended questions. interview transcripts (n= ) analysed in nvivo with several iterations of coding. sydenham garden is managed as a nature reserve where clients may grow vegetables, herbs and flowers. clients may then use these plants or sell them at local fairs. the programme also includes the opportunity to engage in arts activities. bay-richter rct blood samples were taken at baseline, weeks, and weeks and assessed for inflammatory factors. psychopathology was measured with madrs. analysis with repeated measures anova -week garden rehabilitation or treatment as usual. cerwén qualitative, ipa semi-structured interviews (n= ) focusing on participants’ experience of rehabilitation after weeks of the intervention. the analysis focused on the experience of sounds by searching systematically through interview weeks of nature-based rehabilitation therapy in alnarp garden, sweden. the garden is hectares in size and includes a nature-like area and an area for cultivation. the garden is prescribed for people with stress-related illness and is designed to include relaxing features. authors, year design methods intervention details transcripts. references to sounds were then coded, categorised, and analysed for meaning. detweiler case study observational study, focusing on improvements in gait, walking distance, and independent toileting in the stroke patient during rehabilitation in the dementia wander garden after initial indoor rehabilitation, the patient was rehabilitated in the dementia wander garden for increased durations of time ( mins initially to mins after days). the patient was trained by rehabilitation professionals to navigate obstacles and lift his right foot while walking. edwards mixed methods, before- after study a new garden was built in a care home for people with dementia, and participants were assessed before the garden was opened, and months after, for: cognition (mmse); dementia-related quality of life (demqol); depression (scdd), and agitation (cmai). scores before and after were compared with t-tests. semi-structured interviews for qualitative data. a therapeutic, interactive, sensory wandering garden with adjoining atrium/ sunroom. the garden was designed after a review of the literature, and included components aimed at evoking pleasurable memories and experiences (eg. a viewing platform over the australian bush, a finch aviary, a water feature and growing beds). eriksson qualitative, exploratory grounded theory study patients with stress-related illness were recruited from rehabilitation clinics with theoretical sampling. data collection included field observations and an open-ended interview with each participant. open and focused coding, and constant comparison were used to derive themes. four rehabilitation programmes in a rehabilitation clinic in sweden. two of the programmes involved therapeutic gardening activities such as flower arranging and planting cuttings. these were performed in a garden designed to promote relaxation and healing. eriksson longitudinal, grounded theory study participants (n= ) in a therapeutic gardening rehabilitation programme were interviewed three times at weekly during the rehabilitation process, and once three months after the intervention. data were analysed using grounded theory techniques (memo writing, constant comparison) vocational rehabilitation clinic in sweden, including a therapeutic garden. the garden is in a -metre square greenhouse and the rehabilitation is supported by a multidisciplinary team (occupational therapist, physiotherapist, social worker, gardener). galvin qualitative, thematic analysis focused conversational interviews used to explore: personal circumstances; health & social care; self-perception; and views of the sheltered work opportunity project. data sheltered work opportunities project – a non-profit shrub nursery based in dorset, uk. all aspects of horticulture are undertaken by people from rehabilitation and hospital services, who are supported by paid staff. authors, year design methods intervention details analysis with thematic content analysis. gigliotti observational, quasi- experimental study people with dementia were offered three types of ht: cooking, crafting, and planting. observational data were collected during ht and traditional therapies using a dementia care mapping technique, and compared between groups using paired samples t-tests. different types of ht offered by students: nine planting, nine cooking, and eight crafts. activities took place both within the dementia care home and outside in planting beds. gonzalez a&b single group before-after study two before-after studies examined existential issues and depression following a brief ht programme. both studies used the bdi to measure depression. existential issues were measured with the lri-r in study and the soc in study . repeated measures anova used to compare scores at baseline, during the intervention, and -months after. -week ht programme for depression, including “active” components (sowing, germinating, pollinating) and “passive” components (walking, watching nature) heath cross-sectional survey -item survey based on the design goals of the garden was sent to residents, family members, and care staff. the survey included likert-type questions and yes/ no/ unsure items. descriptive statistics were presented and compared between stakeholder groups with chi-square tests. eight therapeutic gardens were built on the lodge, a care home for residents with cognitive impairments. residents were free to use the garden as they wished – there were no structured activities offered. hewitt mixed method, before- after study participants were assessed for activities of daily living (badl), cognition (mmse), and wellbeing (bradford wellbeing profile). measures were taken at baseline, , and months. hours’ weekly structured gardening activities over months. the sessions began with group socialising, followed by structured gardening activities, and a discussion of the day’s work. jagger duoethnography; critical pedagogy of place ethnographic collection of field notes, observations and photographs informal and formal conversations with faculty members and students creation of a learning gardening in urban education facility. university of toronto students, staff and members of the community were invited to engage in garden-based learning programmes. participants used the garden as a social space and grew food together. jonveaux mixed-methods design survey of geriatric care centres (n= ) structured interviews (n= ) survey for postoccupancy garden visits, active gardening activities and transgenerational workshops authors, year design methods intervention details evaluation kim nonrandomised pretest- posttest, between-group study patients were assigned to groups involving occupational therapy only, or horticulture- based occupational therapy (approach for group allocation unclear). groups were evaluated before and after the intervention on visual-motor coordination skills (grooved pegboard test); mood (gds); and activities of daily living (fim) horticultural occupational therapy was designed to support physiological and psychological improvements among stroke patients. the course was run over weeks and included activities such as sowing sprout seeds, making flower baskets, making soup, and making calendars with tree leaves. lee two-group, pretest- posttest study participants were assessed on self-esteem (rse) and depression (zds) at baseline and after weeks of horticultural therapy or no horticultural therapy. the shelter was fitted with a kitchen garden, a farm in the field, and farming tools. ht sessions were delivered over weeks. activities included flower pressing, flower arrangement, adopting herb cuttings, group planting, herbal hair rinse making, and outside walks. lidén before-after single group study health-related quality of life (hrqol) of the female participants was assessed using sf- measures at baseline, after weeks and at the end the programme. the four-leaf clover project combined established horticultural therapy at alnarp garden with supported employment (se) as job coaching for the rehabilitation of people with disabilities or stress-related illness. participants engaged in gardening and handicraft activities, mindfulness exercises and spent time in a natural and relaxing environment. luk rct (single-blinded pre- and post-test) nursing home residents with agitation were randomly assigned to a horticulture and a control group. levels of agitation were measured pre- and post-intervention using the chinese version of the cohen-mansfield agitation inventory (c-cmai). participants engaged in weekly horticultural activities including seeding, planting and fertilising in an outdoor garden for a period of weeks. the control group engaged in social indoor activities for stimulation including origami, doing puzzles, drawing, and making collages. o'brien ethnographic case studies participant observation interviews (n= ) focus groups with practitioners thematic analysis in the therapeutic gardening programme (case study ), participants with mental health problems were either referred or self-referred and volunteered in the garden to times a week for a full day. they engaged in outdoor conservation activities ottosson crossover pre-post study measurement of systolic and diastolic blood pressure and heart rate, the necker cube pattern over a period of months, participants spent h of recreational time in an outside garden (intervention) or indoors (control). individual tests were conducted on days authors, year design methods intervention details control test (ncpc), digit span forward (dsf), digit span backward (dsb) and the symbol digit modalities test (sdmt) structured staff interviews pre and post recreational time at intervals of days. in both settings participants were resting and not engaging in any physical activity. seven participants began the study with the outdoor intervention, while began in the indoor control group before crossover. blood pressure and heart rate were recorded and staff were interviewed for background information. pálsdóttir longitudinal mixed- methods design measures pre and post intervention and at year follow-up: experiences of everyday occupations (oval-pd), self-assessed occupational competence (osa-f), health status (eq-vas, sci- ), and sense of coherence (soc- ) semi-structured interviews weeks after intervention the rehabilitation programme took place in a specially designed two-hectare health garden where participants could use the garden freely and according to their individual needs. the intervention programme ran for weeks in which weekly sessions of to and a half hours combined relaxing exercises with horticultural activities in between meetings with the physiotherapist or psychiatrist. at baseline, the following instruments were used: sci- , soc, osa-f, oval-pd, and eq-vas. at follow-up ( weeks), the following instruments were used: sci- , soc, and osa-f. at follow-up ( weeks), the following instruments were used: oval-pd, eq-vas, and semi-structured interviews. one year after the intervention ended, return to work rate was assessed (follow- up ). parr ethnographic case studies documentary analysis interviews observations volunteers at the ecoworks allotments project engage in a range of gardening activities, both individually and in groups. the focus is on landscaping and restoration rather than food production and participants do not work towards specific therapeutic goals. at the coach house trust, activities include recycling, composting and general gardening and furniture making. organic food is grown for use by the project and local residents and participants also landscape private residential gardens on a contract basis in addition to receiving a £ reimbursement for travel and food expenses. perrins-margalis qualitative case study participant observation journals completed by participants over a week intervention period, participants in the rehabilitation clubhouse took part in weekly structured authors, year design methods intervention details semi-structured interviews (n= ) hermeneutic phenomenological analysis horticultural activities and were asked to reflect on their experience in a journal after each session to explore qol impacts. activities varied each week and included planting seedlings, creating wreaths and flower beds and preparing soil. rappe survey design questionnaire including the zung self-rating depression scale (zfds) and personal assessments of different aspects of the garden nursing home residents were given access to an activity garden and visit a balcony overlooking the garden. rappe survey design qol questionnaire including the nottingham health profile (nhp) the nursing home residents have access to a park within the institution along with walking paths and a pond, where outdoor visits were defined as either walking in the outdoor space or viewing it from the balcony. rappe mixed-methods case study questionnaires diaries completed by participants participant observation the group of mental health outpatients met weekly at a gardening plot to cultivate vegetables and grow flowers, herbs and berries. other tasks included weeding, picking flowers and produce and watering the plot and compost heap. during the sessions participants engaged in group conversations and were given diaries and access to cameras to document their own experiences. raske qualitative case study semi-structured interviews residents were given access to an enabling garden in the courtyard of the nursing home. activities included indoor seed planting, soil preparation, garden maintenance, harvesting, and eating the produce renzetti qualitative evaluation semi-structured interviews (with staff) grounded theory the project offers shelter and support services to victims of domestic violence, including a working farm where participants voluntarily take part in farming activities such as preparing beds, planting, watering, weeding and harvesting for up to hours per week. other farm-related activities include cooking farm-to-table, flower arranging, making crafts and body products from harvested products. richards pretest-posttest design questionnaires including symptom checklist- -revised (scl- -r), comprehensive review of addiction variables and effects (crave), frequency of self-reinforcement over a month period, offenders took part in class lectures, group therapy and weekly gardening work under supervision. the gardening programme is linked to environmental and anti-drug education where offenders are taught the values of authors, year design methods intervention details questionnaire (fsrq) and the generalized expectancy for success scale (gess) hard work, respect for self and for all living things, and cooperative vocational skills. sahlin before-after study questionnaires at baseline, follow-ups and and months after intervention: shirom- melamed burnout questionnaire (smbq), the beck depression inventory (bdi-ii), the beck anxiety inventory (bai), the psychological general well-being index (pgwb) register data on health and rehabilitation the rehabilitation included garden activities, weekly guided walks in the nearby nature reserve, therapeutic painting, group therapy and guided relaxation in nature and indoors. after weeks of rehabilitation ( h per day for times a week), participants gradually re-entered work over a period of weeks. the activities took place in a small house with a conservatory, garden and a greenhouse bordering a -acre nature reserve. sarno qualitative pilot study observations interviews patients, their families and staff had access to a restorative conservatory ( , f ) and outdoor greenspace ( , f ) where patients propagate seeds and cuttings, arrange flowers, make cactus gardens and terrariums, and also work on various horticultural craft projects. patients in the aphasia community groups met three different times over an eight-week period in hour-long horticulture sessions. stein qualitative case study participant observation in weekly gardening sessions, residents (all in wheelchairs) take part in gardening activities and are supported by volunteers who also facilitate discussions and relationship building within the group. verra prospective, nonrandomized, controlled cohort study pre- and posttest group comparison between programme without horticultural therapy (control, n = ) and with horticultural therapy (intervention, n = ) using medical outcome study short form- (sf- ), west haven-yale multidimensional pain inventory (mpi), hospital anxiety and depression scale (hads), the coping strategies questionnaire (csq ), and two functional performance tests the horticultural therapy program consisted of seven sessions of group therapy, each of -hour duration. participants in the control group received a standard pain management programme, while the horticultural therapy programme consisted of sessions of group therapy, each of -hour duration, held twice a week for weeks. under the guidance of a physiotherapist and horticulturalist, participants were engaged in walking through the garden and greenhouse, examining plants and seeds, potting and vegetable gardening, digging and making bouquets of flowers. währborg retrospective cohort comparison of sick-leave status and the programme took place in a rehabilitation garden over a authors, year design methods intervention details study healthcare consumption using national databases period of weeks where participants engaged in gardening activities, relaxation exercises, psychotherapeutic activities and walking. whatley qualitative case study participant observation semi-structured interviews participants took part in the gardening project days per week where outdoor areas included a japanese garden, communal garden beds for growing vegetables and herbs and a chicken coop. gardening activities included planting seedlings, watering, harvesting, composting and writing plant labels. other programmes for skill development included the running of a community kitchen, market and creative projects. wichrowski quasi experiment group comparison of heart rate, poms total mood disturbance (tmd) score and hr pre- and postintervention participants in the horticulture group attended a single session, while those in the control group attended a patient education class (pec). after an initial tour of the horticulture facility, participants immersed themselves in the sensory environment and engaged in a planting activity. zhu rct measured psychiatric changes using the positive and negative syndrome scale (panss) at baseline, the end of the th week session and the end of the th session participants in the intervention group (n= ) engaged in guided horticultural therapy for a period of weeks for times every week with each session lasting for minutes. activities included ridging, planting, watering, fertilising, collecting vegetables and cooking. the control group (n= ) only received the standard medication treatment. . anova, analysis of variance; badl, bristol activities of daily living scale; bsi, brief symptom inventory; csdd, cornell scale for depression in dementia; demqol, dementia quality of life instrument; fim, functional independence measure; gds, geriatric depression scale; ht, horticultural therapy; ipa, interpretative phenomenological analysis; mmse, mini mental state exam; poms, profile of mood survey; rse, rosenberg self-esteem scale; vas, visual analogue scale; zds, zung depression scale supplementary table s . study findings and conclusions (gardening and horticulture-based therapies). authors, year key findings conclusions authors, year key findings conclusions gardening/ horticulture-based therapies adevi three themes developed: ( ) sensory impressions. sensory stimulation and engagement in the gardening were reported to have therapeutic effects. ( ) self-chosen places in the garden. people found places they identified with in the garden that gave them a sense of belonging; and ( ) interactions between concrete and symbolic activities. interacting in the garden in an autonomous way, and finding ways to symbolise difficult experiences had therapeutic effects the role of the natural environment in developing a model for stress recovery was discussed. the garden therapy opened participants up for other modalities of therapy. adevi two main themes developed: . “the garden and me – sensuous, moods and symbolism of nature” – participants described the therapeutic benefits of their “favourite places” in the garden, and the pleasure of doing the work. . “together in a garden – the garden, the caregivers and the group” – participants described the benefits of sharing the experience of horticulture with people in similar situations. overall, the “calmness and the kindness” of the garden was contrasted with the harshness of other aspects of participants’ lives. the relaxing practice of gardening was proposed as a way to enhance self- regulation. aslan two overarching themes were found: “the process” and “experiencing change”. “the process” was made up of four sub-themes: “childhood and innocence; nature; community as method, and staff lead. “change was made up of “the old versus the new” and “self-development”. the features of recovery through nature – the activity, the relationships, and nature – facilitated a process of enlightenment and change. austin there was a trend toward improvement on most functional activities (physical fitness, feelings, change in health, overall health, social support, social activities, qol), though only social activities was significant (p=. ). total emotional score improved (p=. ). there was a trend to reduced depression levels, and participants walked further in the minute walk test (significance for both measures, nr) the study found some support for the possible benefit of therapeutic gardening among older people. two measures showed significant improvements, and there was a general trend to improvement on all measures. the study was limited by a small sample size, and better powered studies are needed. barley participants in the programme reported benefits of horticulture in terms of: providing purposeful activity; improving mood; escaping life’s pressures; being outdoors and social contact. horticultural and arts-based therapy are feasible for improving health in primary care patients with serious physical and mental health problems. follow-up studies are required to understand longer-term impact. bay-richter the -week garden rehabilitation programme had no effect on depression scores; however, biomarkers of inflammation (interleukin and interferon gamma) were reduced by the garden therapy. garden therapy did not appear to have an effect on depression scores, but may play a role in reducing inflammation. cerwén three classes of sound were identified in the garden, which had different effects on therapeutic impact. “natural sounds” were generally described as calming and “soft”, they also often spoke “quietness” and natural soundscapes can be useful in promoting therapeutic authors, year key findings conclusions about silence. “technological sounds” most often came from the motorway near one edge of the rehabilitation centre, and were described as annoying and unpleasant. finally, “human sounds” (conversations, speech etc) elicited varied responses, with some types of talk being very relaxing, and others stressful. benefits in rehabilitation. detweiler after rehabilitation, the patient could complete most of his adls (eg moving from bed to chair, chair to standing, toileting, getting in and out of a car), and his aphasia and self-esteem increased. nature may support healing by reducing the negative physiological impact of stress. the need for voluntary attention in natural environments may support improved executive control function. edwards participants’ mean qol (demqol) increased pre-posttest ( + . to . + . , p=. ), while agitation (cmai) and depression (scdd) both decreased ( . + . to . + . , p= . ; and . + . to . + . , p=. , respectively). comments from qualitative interviews showed a positive view of the garden. all participants appeared to benefit from the garden. this was even the case where participants did not actively engage in the garden, but simply sat outside and enjoyed the views. eriksson the following features of rehabilitation were identified as important: . changing self image; . receiving respect from others; . being part of a group; . taking control of everyday life; . developing conscious strategies to manage stress; . doing homework to integrate new practices into everyday life; . re-evaluating occupations; . discovering enjoyment in activities; and . changing attitudes towards activities. two routes to integrating rehabilitation into everyday life were identified: changing ways of handling stressful situations was associated with the cognitive approach to rehabilitation, whereas clients who participated in the combined programmes including therapeutic horticulture changed their occupational repertoires. different approaches to rehabilitation appear to lead to different changes in everyday life. eriksson four “phases” were identified in the rehabilitation process in the therapeutic garden: . being in the atmosphere of acceptance (ie. away from daily stresses); . being absorbed in the present (taking pleasure in activities and discovering new competencies); . worries about connecting experiences to everyday life (continued concerns and uncertainties about the future after leaving the care farm); and . bridging rehabilitation to everyday life (finding ways to connect the rehabilitation experience with home life, eg. by bringing the plants they had nurtured home). the study has elaborated some of the processes by which therapeutic gardens bestow benefits for participants. it is important for people with stress-related illness to have the opportunity to spend time in a quiet and calm environment. galvin three themes were identified, each of which included several sub-categories: users’ social worlds (isolation, friendships, loss, living with mental illness, friendships and relationships, and identity); stigma and discrimination (accommodation, problems perceived by users, coping with stigma/ discrimination, lack of autonomy, intrusion, confidentiality, employment, unfair treatment, and horticultural therapy can play a part in rehabilitation. authors, year key findings conclusions fear); and moving on (positive and negative coping, purpose and place, motivation/ self-esteem, value, independence, indicators of success, being in control, insight/ acceptance and denial, and life changes) gigliotti participants’ productive activity level was not significantly higher in horticultural activities when compared with traditional dementia care activities (p = . , t = . , d.f. = ). however, the mean time spent doing nothing was lower during horticultural activities compared with traditional dementia care activities (p = . , t = . , d.f. = ). the average positive affect score was higher for horticultural activities compared with traditional activities (p < . , t = - . , d.f. = ). no significant differences in affect or engagement were found between three different modalities of horticultural therapy. horticultural therapy produced high levels of positive affect and engagement in the care home residents. the authors suggest these programmes should be expanded for dementia care. gonzalez , a, when enrolled in a horticultural therapy programme, participants’ (n= ) depression (bdi) scores reduced from . + . at baseline to . + . at weeks follow-up, and . + . at months’ follow up (p<. ). however, no significant increase in life regard (lri-r) was found ( . + . vs . + . , p=ns). in a second study (n= ), comparable results were found for the bdi. existential issues, as measured by the soc, again failed to reach statistical significance between baseline, week, and -month follow-up . ( . ) vs . ( . ) vs . ( . ). subsequent pooled analyses showed that participants’ perceived group cohesiveness increased slightly during the intervention, and no significant correlation was found between cohesiveness and mental health measures. horticultural therapy can provide benefits in terms of reducing depression levels. the authors suggest this may be due to psychological distance from everyday environments, involvement in interesting and pleasant activities, and cohesiveness of the group to which one belonged heath of volunteers, residents, and family members, . % had visited at least one of the gardens in the care home. compared with volunteers, a significantly higher number of residents and family members had done so (χ ( , ) = . , p < . ). among residents, the most common reasons to visit the garden were to sit ( . %), visit ( . %), walk, or reflect (both, . %). there were mixed responses on whether the garden was worth the money ( . % “definitely yes”; . % “yes”; . % “no”; . % “definitely not”). staff were more likely to say “no” than volunteers, families, and residents (χ ( , ) = . , p < . ). the majority of respondents judged the garden’s aims to have been well met. staff were generally more critical in their evaluations of the garden than residents and families. hewitt participants’ mean wellbeing scores increased over time, though the change from the baseline to endpoint did not reach significance (t( ) = . , p = . ). over months, participants’ mean cognitive functioning (mmse score) declined from to . (paired t( ) = . , p = . ). in qualitative interviews, carers identified benefits in terms of: . enjoyment; . independence; . feeling useful; . feeling valued; . reduced anxiety. the findings suggest structured group gardening may help increase or maintain subjective wellbeing among people with dementia despite continued cognitive decline. a larger, controlled trial is needed to confirm these effects. authors, year key findings conclusions hine the survey of uk care farms found city farms, independent farms and farms linked to charities/ external organisations. these varied from . to hectares. the focus was on developing work, social skills, or accredited education. after spending time on a care farm, participants’ self-esteem (rse) increased by . points (p<. ), and significant improvements on indicators of mood (anger, confusion, depression, fatigue, tension, vigor) were seen (all, p<. ). the care farm case study showed significant benefits. however, these need confirming in larger, more controlled studies. jagger in-depth exploration of main themes within community learning garden: the aesthetic experience (importance of bright colours and smells to trigger aesthetic responses), the affective response (joy, peacefulness and relaxation) and the building of community (shared place for learning and socialising). users of the garden showed strong emotional responses and experiences the garden as place of pleasure and enjoyment. the concept of community can be extended to include plant life and build better connections with nature and each other. jonveaux all institutions in the nancy region had green spaces and organized outdoor activities. the post occupancy evaluation of a single garden (n= ) showed that all patients were satisfied with the existence of the garden space, unimpeded view of the garden from their rooms, and the possibility of taking a walk and appreciated the contact with nature, enjoying sunshine, open air, presence of trees ( %), size of the garden ( %), luminosity ( . %), protected space ( . %), size ( %), and width of the walkways ( %) as a welcome change from the hospital environment. garden visits were reported to have a positive effect ( %), a tranquilizing effect ( %), a positive effect on mood ( %) and improve communication with others ( . %) including the nursing staff. garden visits and activities were highly valued by patients and improved their communication with staff. many older patients had concerns over safety and possible falls which should be addressed in the design of healing gardens. kim visual-spatial hand dexterity improved in both groups but only reached significance in the horticulture-based group ( . to seconds, p<. ). gds scores decreased by . % in the occupational therapy group (p<. ), vs . % in the horticulture-based group (p<. ). fim scores also increased significantly in both the occupational therapy group ( . to . , p<. ) and the horticulture-based group ( . to . , p<. ) horticulture-enhanced occupational therapy may be an effective way to improve the physical functioning of stroke patients with hemiplegia by increasing hand dexterity and independence. lee self-esteem scores increased by + . points (p=. ) and + . points (p=ns) in experimental and control groups, respectively. depression scores reduced by . (p=. ) and . points (p=ns) for experimental and control groups, respectively. ht was found to increase self-esteem and reduce depression among domestic violence survivors. limitations include the nonrandomised nature of the study and the small nonprobability sample. lidén of the women who completed all sf- measures, significant improvement in hrqol were observed for mental and social aspects but there were no significant improvements to experienced pain or blood pressure. social functioning was significantly improved towards the end of the programme. the precise benefits of combined horticulture and supported employment remain unclear due to confounding factors and limited sample size. however, there are indications that women benefited authors, year key findings conclusions from the social aspects in a natural environment. the programme is recommended as viable option for improvising wellbeing and facilitating a return to work. luk following intervention, no significant differences in c-cmai scores (p= . ) or subscales were recorded compared to the control group or within groups (experimental group: p= . and control group: p= . ). a positive correlation (r= . , p= . ) between mini-mental state examination scores (cmmse) and the pre- and post-test difference of the ccmai score was found in the experimental group, while these were negatively correlated in the control group (r= . , p= . ). overall, no significant reduction in agitation was recorded following intervention. the correlational results, although not quite statistically significant, indicated that horticultural activity decreased the frequency of agitated behaviors for subjects with relatively lower c-mmse scores. however, results also indicated that horticultural activity increased agitation for those with a relatively higher c-mmse score. horticultural therapy may be suited for lowering agitation in people with severe cognitive impairment. o'brien in the therapeutic programme, key themes were identified: ) improving relations with others and nature (sense of mutual nurturing, improved resilience from contact with nature, value of team work and learning); ( ) working alongside others (building social capital, environmental conservation linked to personal recovery); and ( ) developing social and employable skills (overcoming isolation, better social skills and new knowledge). participants in the therapeutic programme reported a range of benefits to their mental wellbeing and improvements to social capital. it shows that hands-on nature-based work can help reintegrate marginalised groups into society and provide them with better skills relevant to their social environment and the job market. ottosson positive correlations were found between psycho-physiological balance and pulse rate (r= . , p< . ), diastolic blood pressure (r= . , p< . ), pulse pressure (r= . , p< . ) and rate pressure product (r=- . , p< . ) indicating that these are influenced significantly by a period of rest in a garden. rest outdoors seems to have restored both pulse rate, diastolic blood pressure, pulse pressure and rate pressure product, whereas these values continued to rise during the period of rest indoors. time spent in the outdoors is important for individuals with low psycho- physiological balance and can support recovery from stress and fatigue. pálsdóttir at follow-up ( weeks), the perceived general occupational value was significantly higher (p < nature-based rehabilitation helped authors, year key findings conclusions . ) at (sd ) compared with baseline measurements (sd ), (n = ). the stress and crisis inventory (sci- ) showed a significant reduction in general variable from . (sd= . ) at baseline to follow-up ( weeks) of . (sd= . ). twice as many participants (n= ) scored below . (normal to slightly raised level of stress) on the sci- . main themes were identified in the interviews: ) “slower pace in everyday life on one’s own terms” (increased awareness and mindfulness in daily activities), ) “everyday occupations more often related to nature” (more free time spent in nature), ) “social interaction” (more social interaction and group activities in nature), ) “creative occupations” (resumed or took up creative occupations). participants improve their functioning in daily life and improved their health. it made them re-engage with nature and creative occupations. parr documentary analysis of historical documents shows how garden-based interventions in mental health are based on discourses of the healing power of nature and disciplinary benefits of physical labour. often used as cheap labour, predominantly male patients engaged in heavy physical labour in newly emerging regimes of outdoor recreational therapy as means of social control. empirical ethnographic data from two contemporary gardening projects show that discourses of integration and normalisation are still informing horticultural allotment projects today, with new links to active citizenship and economic utility. at the ecoworks project, there was limited socialisation at the remote garden site but despite its non-interventionist design participants still reported positive feelings of personal achievement and productivity and benefiting from the calming and restorative engagement with nature. in contrast, the coach house trust gardening project was more productivity- and output-oriented with volunteers locating therapeutic effects in the physical exhaustion, work ethic and psychological contentment. here the presence of the project was made more socially acceptable by providing aesthetic and visual improvements to public places while symbolically integrating people with mental health problems as useful citizens into the community. despite gaining confidence in social interactions, participants encountered several difficulties resulting partly from a lack of training and being under the effects of medication and conflicts arose between participants when having to perform hard work in bad weather conditions. therapeutic gardening projects can transform passive and isolated patients with mental health problems into active and valued community-workers. yet, discourses of participatory citizenship remain relevant and there are dangers of exploitation where other parties benefit more from the participants’ unpaid labour. such community work should be financially rewarded more adequately and a range of community-based garden spaces should be made available, including restorative programmes without clinical or policy objectives. perrins-margalis themes related to qol emerged from the phenomenological analysis: ) group experience (team work, helping others and feelings of accomplishment), ) sharing experience (sharing end products with others, sharing of ideas and strategies during activities), ) learning experience (novel experience and new skills), ) sensory experience (hands-on work with soil, smelling and feeling plants), ) creative experience (creative outlet and individual choice), ) emotional experience (relaxation, fun and stress relief), ) reminiscent experience (sharing memories of gardening, facilitated group discussions) group-based horticulture can have positive effects on qol. it provides participants with a sense of accomplishment and facilitates social interaction and the learning of new skills. occupational therapy may benefit from introducing purposeful horticultural activities. authors, year key findings conclusions rappe while of the participants visited the garden daily, experienced at least one or more hindrances in visiting, mostly due to lack of personal assistance, weather conditions or concerns over safety. three out of four participants ( . %) reported feelings of recovery following their visits, while . % felt more cheerful. none of the participants reported using fewer medicines as a result of their visits but % reported a reduction in pain. a negative correlation was found between depression scores on the zsds scale (r=- . ) and frequency of garden visits and % of depressed participants reported some hindrances compared to only % in the non-depressed group. depressed participants were less likely to report feelings of recovery following a visit compared to non-depressed visitors ( . % compared to . %, p= . ) and half of the depressed visitors described garden visits as a burden, compared to only . % among the non-depressed (p= . ). however, a greater proportion of depressed residents ( . %) reported feeling more cheerful and alert after a visit, compared to . % of non-depressed residents (p= . ). garden visits and seeing green environment are associated with enhanced emotional wellbeing. physical barriers, issues of access and personal safety need to be addressed when designing garden spaces. residents with depression were more likely to perceive the visits as strenuous and less likely to feel recovered, meriting more research. rappe half of the participants reported visiting the garden only in the company of staff, while only % visited them alone. lack of assistance and adverse weather conditions were the main barriers to accessing the garden. frequency of outdoor visits had a strong positive effect on self-reported health (b= . , adjusted r = . , p= . ). visiting outdoor gardens can enhance the self-rated health of older women living in institutional care. rappe participants were mainly motivated by the opportunity to spend time outdoors and getting fresh air and exercise. sensory experiences were especially valued and participants derived feelings of usefulness and meaningful activity from the gardening. group activities and interactions were also highly valued and all participants reported feeling calmer, more cheerful and invigorated after their visits. group gardening may be a feasible way for ngos to support the recovery process of individuals with mental disorders. gardening activities can be designed with flexibility and a combination with group interaction and physical activity may be particularly beneficial. raske themes emerged from the interviews: ) garden design and construction (involvement in design), ) resident quality of life (value of comfort, security, enjoyment, meaningful relationships and improved autonomy and physical functioning), ) staff and volunteer quality of life (improved quality of life), ) shared stories (personal stories of garden experience), and ) enabling garden as marketing tool (economic benefit to nursing home) the garden had a positive impact on resident quality of life and improved their social relationships with staff and the wider community. renzetti major themes emerged from the interviews: ) staff perceptions of farm program benefits (mental health benefits and reduction in social isolation, feelings of fulfilment and accomplishment, improved links with community), ) staff concerns about the farm program (demands on staff, lack of gardening experience, financial sustainability), ) reconciling the farm program with the shelter’s mission and goals (shared therapeutic goals, positive mental health impact of farming) the farming programme offered valuable support to shelter residents and had a positive impact on their physical and psychological wellbeing. richards on the scl -r scale, significant changes pre- and post-intervention were only found for psychoticism (reduction in mean value from . (sd= . ) to . (sd= . ), t= . ). on the although horticultural therapy may quickly reduce reactive psychological symptoms authors, year key findings conclusions crave scales, means for all symptom scales were reduced post-test, while mean fsrq (t= . ) and gess (t= . ) scores increased but neither were statistically significant. related to substance abuse, it may be less effective at reducing resistance to addiction due to existing personality and cognitive deficits in the offender population. prison programmes can benefit from making educational links between chemical-free gardening and drug-free living. sahlin mean burnout scores decreased from . (sd . ) at start of nbr rehabilitation to . (sd . ) at the end of nbr, . (sd . ) at six months, and . (sd . ) at twelve-month follow-up. on the beck depression inventory (bdi-ii), mean scores were reduced from . (sd = . ) at baseline to . (sd = . ), . (sd = . ) and . (sd = . ) at each follow-up and the number of participants scoring “moderate” or “severe” depression decreased from % at the start to % months after follow-up. mean scores on the beck anxiety inventory were also reduced from . (sd . ) at baseline to . (sd . ), . (sd . ) and . (sd . ) at each follow-up, while the number of participants scoring “moderate” or “severe” anxiety decreased from % at the start to only % at months follow-up. mean values for well-being on the pgwb gradually increased from . (sd = . ) at baseline to . (sd = . ), . (sd = . ) and . (sd = . ) at each follow-up. participants in nature-based rehabilitation showed decreased scores of self-assessed burnout, depression, anxiety, and increased scores of well-being at all follow-ups compared to start of rehabilitation. nature- and garden-based activities made up % of the weekly schedule and were likely to play a key role in improving participants’ mental well- being. sarno patients enjoyed participating in the programme and more than half of those who attended reported they began to care for plants which were acquired in the pilot project at home. horticultural activities helped improve social interaction between patients with aphasia and their families. due to the non-verbal nature of horticultural activities, they are particularly well suited for patients with aphasia and other communication disorders. interaction with plants can provide a stimulating environment and improve verbal skills. stein the gardening program was perceived as fun and productive because of the physical activity, the resultant beautiful plants and the companionable relationships between volunteers and residents. choice and voluntary participation are a central aspect of the programme which also helps residents create new memories, as planting flower beds added a sense of normality to the institutional life. the gardening programme also allowed residents to give seedlings or harvested produce to others as a gift. while some participants appreciated being given meaningful work, a sociocultural approach to horticultural therapy can challenge biomedical perspectives and individualist interpretations by shifting focus to the social and institutional environment. authors, year key findings conclusions there is a danger of exploiting participants’ efforts and creativity for the benefits of the institution. verra on discharge, there were small to moderate outcome effects (effect size [es] up to . ) within both groups. the study found significantly larger improvements for the horticultural therapy group vs the control group in sf- role physical (es = . vs . ; p = . ); sf- mental health (es = . vs . ; p = . ); hads anxiety (es = . vs . ; p = . ); and csq pain behavior (es = . vs – . ; p = . ). the addition of horticultural therapy to traditional pain-management programmes may improve physical health, coping ability, and health-related qol in people with prolonged, pain-related disability. währborg a significant reduction in healthcare consumption was noted among participants in the horticulture-based rehabilitation programme compared with the reference population. the main changes were a reduction in outpatient visits to primary healthcare and a reduction in inpatient psychiatric care. no significant difference in sick-leave status was found. horticultural rehabilitation programmes can decrease the demand for healthcare consumption. whatley main themes emerged from the ethnography of the garden: ) creating community (bringing people together, connections with wider community), ) flexible environment that supports participation (improved participation and cooperation), ) creating a learning environment (new approaches to coaching and learning) participants benefited from the horticulture project as it helped create community, a flexible environment that supports participation and opportunities for learning new skills. community-based mental-health programmes using garden spaces can improve social inclusion, enable occupational participation and facilitate contact with the neighbourhood. wichrowski following the horticulture intervention, total mood disturbance (tmd) was reduced from a score of . t . to . t . (mean ± sd, p < . ). heart rate was also reduced by bpm, from a preintervention level of . ± . to . ± . bpm (p < . ). in the control group of educational classes, neither tmd nor heart rate changed significantly. horticultural therapy can improve mood state and reduce stress and heart rate and its addition to cardiac rehabilitation programmes can bring significant psychosocial benefits to participants. zhu there were significant differences in total positive and negative syndrome scale (panss) scores in between intervention and control group after weeks (t=- . , p< . ) and weeks (t=- . , p< . ). there was statistically significant difference before and after intervention in the intervention group (f= . , p< . ) and in the control group (f= . , p< . ). there were also statistically significant differences in the positive scale scores at the baseline, the end of the th week session and the end of the th session both among the intervention group (f= . , p< . ) and the control group (f= . , p= . ) as well as statistically significant difference in the negative scale score at the end of the th session among two groups (t=- . , p< . ). treatment effects and rehabilitation for schizophrenia patients can be improved when medication therapy is combined with horticultural therapy. -mansfield agitation inventory, demqol, dementia quality of life instrument; mmse, mini mental state exam; ns, non-significant; nr, not reported; poms, profile of mood states survey; qol, quality of life; scdd, scale for depression in dementia supplementary table s . study design, methods, and intervention details (animal-assisted therapies) authors, year design methods intervention details animal-assisted therapies barker pretest-posttest crossover study changes in self-rated anxiety (state-trait anxiety inventory) compared after two interventions: animal assisted therapy or therapeutic recreation. mixed models, repeated measures analysis used to compare conditions. the animal-assisted therapy session consisted of approximately minutes of group interaction with a therapy dog and the dog’s owner. therapeutic recreation sessions were held daily on the unit. they varied in content, including education about how to spend leisure time, presentations to increase awareness of leisure resources in the community, and music and art activities. barker controlled crossover quasi-experiment patients were assigned to the dog condition or control condition on alternating ect sessions. participants were presented with a vas for anxiety, depression, and fear before the intervention/ control, and after minutes. patients were briefly interviewed after the session. nurses completed the same vas scales to assess inter-rater reliability. pearson correlations were conducted between patient and nurse vas ratings. mixed model, repeated measures ancova and least squares analysis used to compare post- treatment scores for intervention vs control; mins of interaction with a therapy dog and its handler. the handler was instructed to focus conversation on the therapy dog and the patient’s experience with pets. although physical interaction with the therapy dog, such as petting and hugging, was permitted, it was not suggested, and patients were allowed to determine the level of interaction. the control intervention provided patients with news, entertainment, or outdoors magazines to read. beck rct measurement of attendance and participation rates, brief psychiatric rating scale, nurses’ observation for inpatient evaluation (nosie) participants were randomly assigned to a bird intervention group or nonbird group. daily sessions were held over a period of weeks in a room which contained a cage with finches or a standard room. buettner cross-sectional survey -item survey about interest in and attitude toward a therapy dog programme in the cancer centre in future. hypothetical dog therapy programme authors, year design methods intervention details chinner single group before-after pilot study a structured interview was conducted with staff and patients to assess mood, frequency and quality of social interactions, degree of religious belief, and attitudes towards animals. evaluation at time points: baseline, when the miniature poodle was introduced, and after the intervention. the composition of the participant group changed at each time point due to high death rates at the hospice. “placement of a trained canine companion in a hospice” (patcch) programme. a miniature poodle was introduced as a resident in the study hospice. chu rct patients with schizophrenia were randomised to receive aat or treatment as usual (both, n= ). assessments of self-esteem (gse), self- determination, social support, and adverse psychiatric symptoms were taken one week before and one week after the intervention. weekly -minute aat with two dogs of “nonspecific breeds”, over two months. coakley mixed method, pretest- posttest, quasi- experiment physiological measures (blood pressure, pulse, respiration), behavioural measures (self-reported pain and energy using a vas), and self-reported mood (poms) were taken before and after a visit from a dog. scores were compared using one-tailed t-tests with bonferroni correction. one-off visit from a dog inside the hospital, lasting ~ minutes with each participant. colombo rct participants were randomised to receive a canary, a plant, or nothing. before and after the intervention ( months), participants were assessed for cognition (mmse), qol (leipad ii), and mood (bsi). participants residing in care homes were given a canary (n= ), a plant (n= ) or nothing (n= ) for a period of three months. cushing mixed methods design semi-structured interviews (staff and inmates) questionnaire case file data the wild mustang programme allowed inmates to train and care for wild endangered horses who had been adopted by the general public through donations. inmates would look after the mustang, nurse it through sickness, trim its hooves, groom it and tame it. fournier -group, pretest-posttest quasi experimental study treatment and control groups (nonrandomised) were compared before and after the intervention. outcomes included penpals program. dogs are selected from local shelters and trained by volunteer inmates in prison for to weeks. dogs live with selected inmates who are educated in dog- authors, year design methods intervention details institutional infarctions (obtained from inmate records); human-animal interactions, and the social skills inventory (a -item measure of social and emotional skills). between-group, repeated measures anova. training skills. the volunteer inmates provide for the dogs’ needs (i.e., food, shelter, grooming), and train them. after the training period, the dog is adopted by individuals in the community and the inmates begin the process again with a new shelter dog. flick quasi-experimental study participant behaviours were assessed in the presence/ absence of a dog. predetermined, observable behaviours were recorded on a chart (nonattentive behaviour, attentive listening, nonattentive listening, verbal interaction with other person, nonverbal interaction with other person, verbal/ nonverbal interaction with animal). percentage of time performing behaviours was compared between groups, and anova was used to determine the significance of differences. a dog was brought in to a nursing home for participants to interact with. haughie repeated measures design observational scale and nurses rating scale types of conditions were compared: ) baseline (normal interactions), ) dog and visitor and ) photos of dog and visitor. hoffmann controlled crossover study patients were provided with two sessions: a control interview or an animal-assisted interview. the order of the interventions was randomised for each patient. state anxiety was measured before and after both sessions with the stai. mins interview with a research assistant, with or without the presence of a dog. in both sessions, patients were encouraged to talk about their hobbies, attitude towards dogs and other pets, and their previous experience with dogs. jasperson clinical case study n-of- study. the inmate’s history was recorded, and she was observed at therapy sessions, and asked about her views on the intervention at the conclusion. weekly or twice-weekly sessions with a dog aimed at facilitating social skills, coping skills, and self-awareness. the dog was used as a model to discuss issues such as boundaries (eg. where the dog’s boundaries were, how it would react to them being breached). attachment theory was the theoretical basis for the intervention. johnson pretest-posttest participants were randomly assigned to experimental groups of animal visits (n= ), human visits (n= ) or quiet reading (n= ). adult patients undergoing nonpalliative radiation therapy were assigned to the dog visit group and engaged in - minute sessions three times per week for four weeks with authors, year design methods intervention details participants completed a profile of mood states (poms), self-perceived health questionnaire and orientation to life questionnaire (otlq). one or two visitor dogs and their handlers. participants’ mood, sense of coherence and self-perceived health were assessed before each intervention and at the end of the last session. during the sessions participants combed, petted, played and talked with the dog. katsinas programme evaluation documentary data including staff notes and reports dementia patients were referred to the programme by healthcare professionals and participated and participated for approximately six hours, five days a week and received pre-program admission cognitive assessments. the dog was led and supervised by a staff member to greet and be petted by patients and accompanied groups during activities and garden walks. kovács pretest-posttest independent living skills survey (ilss) therapy sessions of mins were held weekly for a period of months in the garden or occupational room of the institution. participants engaged in exercises with the dog and talked to staff about their feelings. other activities included grooming and feeding the dog as well as physical activities. kumasaka pretest-posttest mood changes in hospital changes were assessed using lorish’s face scale pre and post interaction with dogs. once a month, participating patients were allowed to interact with animals (dogs, rabbits and cats) for ca. minutes. changes in mood were evaluated using lorish’s face scale which allowed participants to choose one of drawn faces along a scale which best fit their mood. mean scores, standard deviation, t-tests and independent t-tests were calculated in spss. le roux rct beck depression inventory and the beck anxiety inventory (bai) participants in the animal intervention group (n= ) met once a week for weeks. participants were visited by a dog handler for min sessions in which the dog was kept on a leash and residents were allowed talk to, groom and pat the dog. lynch pre-test, post-test pilot study antepartum hospitalised women with anxiety or depression completed the state- trait anxiety inventory and the beck depression inventory before and after pet therapy. paired t-tests were calculated from pet therapy sessions were included in the study where participants engaged in unstructured indoor contact with the dog for a period of to minutes. authors, year design methods intervention details the results. marr rct participants were assessed daily using a social behaviour scale and monitored for weeks. a two-group by weeks repeated measure analysis of variance was conducted for each outcome measure participants were randomly assigned to the animal intervention and a control group with traditional rehabilitation therapy. animal therapy consisted of daily h sessions where animal visits (dogs, rabbits, ferrets and guinea pigs) allowed the patients to interact with them. mercer exploratory qualitative case study semi-structured interviews with prisoners and staff members, followed by thematic analysis prisoners were able to visit, pet and feed animals in the animal centre which houses chickens, goats, ducks and miniature ponies in addition to two dogs who were free to wander through the complex and be cared for jointly by prisoners and staff. neer prospective observational study systolic blood pressure measurements pre- and post-activity for periods (pre- intervention, initial intervention and intervention after crossover) nursing home residents in separate facilities were randomly assigned to the dog therapy and control group (n= ) and activities in minute sessions times a week. in the intervention group, participants could pet, feed or play with the dog, while in the control group activities included games, music, exercise and arts and craft. attendance at the sessions was recorded as well as participants’ blood pressure and other health data and hamilton depression scale was used for psychological evaluation. attendance rates were compared using a z test, while other dependant variables were analysed using factoral tests of variance. orlandi quasi experiment an a.de.ss.o (anxiety, depression, somatic symptoms, hostility) test was completed by participants in the experimental aat (n= ) and control group (n= ) before and after undergoing chemotherapy. arterial blood pressure, heart rate and arterial oxygen saturation were also recorded over a study period of weeks chemotherapy patients were offered a choice between a treatment room where pet therapy took place (experimental area) or use a standard room (control). pet therapy sessions took place once a week in a group of patients in phases of minutes each. patients would first observe the dog and join exercises with the trainer before playing with or feeding the dog. perelle before-after study scores on the patient social behavior scale ( -question likert scale assessing a range of social and self-care behaviours) were assessed before and after the intervention, and one month after the intervention. results were four cats, two small dogs, and a rabbit were taken each week for ten weeks at hours a time. the therapy was provided by student volunteers. authors, year design methods intervention details analysed with anova rossetti qualitative case study semi-structured interviews with health staff (n= ) the behavioural health hospital offers pet-assisted therapy to its residents where dog visits are facilitated by a dog handler and patients may also attend scheduled group therapy sessions. savishinsky multiple case study ethnography structured interviews survey semi-structured interviews the format of pet visits varied between the nursing homes: while group sessions were held in two homes were residents could interact with volunteers and pets in a common area, the other facility offered a more individual programme where residents were visited by volunteers and their animals. sockalingam single clinical case study recorded patient history, patient self-report, evaluations by nursing staff and doctors a patient with atypical depression and bipolar disorder was introduced to a pet therapy dog and spent several hours a day with it over a week period. during this time, the patient cared for the dog and took it for walks. stasi quasi-experiment recorded patient history and demographics, questionnaires included the cumulative illness rating scale (cirs), mini mental state examination (mmse), geriatric depression scale (gds), self assessment scale –geriatric (sasg), activities of daily living (adl), instrumental activities of daily living (iadl) participants in the experimental group (n= ) took part in pet therapy sessions per week with a little cat over a period of week. those in the control group (n= ) participated in standard activities in the nursing home. turner qualitative interview study data collected with a topic guide covering areas (experience of the programme; perceived benefits; perceived impact). transcriptions were analysed with content analysis nonprofit intervention involving six dogs and six trainers. the dogs are trained to complete a wide variety of tasks that can help to assist people with activities of daily living. when the dogs graduate from the program, they are placed with children who have physical disabilities. walsh pretest-posttest coopersmith self-esteem inventory, ipat depression scale participating women prisoners initially built kennels and then became responsible for the care and training of dogs each under expert supervision. training sessions lasted between and weeks in which participants were also responsible for grooming, exercise and play with the animals. winkler longitudinal case study behavioural observations and mapping ( weeks pre and weeks and weeks postintervention) a dog was introduced as resident pet in the nursing home and kept on the ground floor and within the garden space where residents could interact with it. authors, year design methods intervention details structured interviews zisselman rct pre- and posttests using multidimensional observation scale for eldery subjects (moses) patients in the pet therapy group received pet therapy sessions with a dog for h a day for consecutive days, while those in the control group engaged in physical exercise. supplementary table s . key findings and conclusions (animal-assisted therapies) authors, year key findings conclusions animal-assisted therapies barker following the animal therapy sessions, significant pretest-posttest improvements in anxiety were seen in patients with mood disorders (f . , p<. ); psychotic disorders (f . , p<. ) and other disorders (f . , p<. ), though not substance abuse disorders (f . , p=ns). with the exception of mood disorders, these effect sizes were greater than for the ‘control’ intervention. animal therapy may provide benefits in anxiety, particularly among patients with psychotic disorders, by providing a nonthreatening, low-demand mode of therapy. barker strong correlations between post-test nurse and patient vas ratings were found (r values, all > . ), although pre-test correlations were inconsistent. ancova findings showed a significant reduction in fear between intervention and control conditions (least squares mean = . vs . , p<. ), but not for anxiety ( . vs . ) or depression ( . vs . ), both, p>. the intervention resulted in a reduction in fear, but not anxiety or depression. this may imply the animal-assisted therapy was particularly effective for helping mitigate fear related to a specific stimulus (ect), rather than trait anxiety. beck attendance was significantly higher for the bird intervention group (z= . , p< . ) and individuals were more likely to contribute to conversation within the group (m = . , sd= . ; f , = . , p < . ). no significant difference in total score on the brief psychiatric rating scale but scores the hostility subscales were significantly lower in the bird group (m= . , sd= . compared to control m= . , sd= . ; f , = . , p < . ). no significant differences between the two groups were found on the nosie scales. the presence of animals can increase participation rates, facilitate conversation in therapeutic group meetings and reduce feelings of hostility to create the sense of a safe environment. buettner of participants, . % indicated they would like to take part in an aat programme. perceived potential benefits were “keeping my mind active” ( . %); pain reduction ( . %); and feeling more comfortable in the cancer centre ( . %). a significant difference between genders was found with respect to perceived anxiety reduction (p=. , direction of difference nr). the waiting room is a suitable site for providing aat to cancer patients. chinner there was a trend toward reduction of patient-patient interactions, and increased patient-staff interactions after the introduction of the dog, although the interactions may have improved the introduction of a dog may temporarily provide happiness and comfort to hospice authors, year key findings conclusions qualitatively. favourable attitudes towards the dog were correlated positively with tiredness (r= . , p<. ); and negatively with isolation (r=- . ). no significant differences in mood were found between time & time . residents, but patients who already feel isolated were more likely to view the dog unfavourably. chu there were significant improvements in the intervention group for self-esteem ( . vs . , p=. ); self-determination ( . vs . , p=. ); and reductions in positive symptoms ( . vs . , p=. ); and emotional symptoms ( . vs . , p=. ). differences on social support and negative symptoms did not reach significance. there were no significant before-after differences on any measure in the control group. a short course of animal assisted therapy can deliver short-term psychosocial benefits to patients with schizophrenia. coakley pretest-posttest comparisons showed a reduction in respiration (t=- . , p<. ) and pain (t=- . , p=. ), and an increase in energy (t= . , p=. ). there was also a significant reduction in mood disturbance (total poms score, t= . , p<. , and all poms subscales except vigor and confusion) there are benefits of pet therapy for hospital patients in terms of improved mood and physiological indicators of distress. the authors suggest this may work by providing patients and nurses with different types of social interactions. cushing providing care for the mustangs allowed inmates to experience a new role as carers providing affection and gentleness. it gave them a new sense of responsibility and autonomy and they enjoyed overcoming the dangers of working with wild horses. staff also appreciated the meaningful labour they provided, while their presence also reduced the number of disciplinary incidents. out of staff members agreed that the programme raised inmate self-esteem ( %) and increased self- confidence ( %). however, effects on recidivism are inconclusive due to methodological limitations and the absence of a control group, although of the released participants who took part in the programme have since been reincarcerated ( %) at a rate below the state average ( %). caring for the mild mustangs was perceived as a meaningful and rewarding experience by both staff and inmates. participation was linked to a reduction in disciplinary reports, particularly in conjunction with substance abuse counselling which warrants further investigation. colombo participants given a canary to care for showed significantly greater improvements in several indicators of physical and mental health than those provided with a plant or no intervention. these included bsi subscales for somatisation, obsessive compulsion, depression, anxiety vs the control group. in terms of quality of life, as measured by leipad ii-sv, the cognitive functioning subscale improved relative to control. caring for an animal appears to have beneficial health effects for institutionalised older people. studies with larger samples and longer follow-ups are required. fourier anova for human-animal interactions: main effect for group, (f ( , ) = . , p < . , higher in intervention group), and phase, f ( , ) = . , p < . , reflecting an increase in hai scale scores from pretest (m = . ) to posttest (m = . ). the number of infarctions in pretest were (treatment) vs (control). post-intervention, the numbers were (treatment) vs (control) x ( , n = ) = . , p < . . manova for social skills: main effect for phase, f ( , ) = . , p < . , and a significant group x phase interaction, f ( , ) = . , p < . . the findings supported the hypothesis that a human-animal interaction programme would improve social skills and reduce criminal infarctions among inmates. authors, year key findings conclusions flick most of the observed behaviours in the care home residents were similar with or without the presence of a dog (nonattentive behaviour, attentive listening, nonattentive listening, nonverbal- person interaction, verbal-animal interaction). two behaviours were significantly increased with the presence of the dog: verbal-person interactions (f= . ; p=. ) and nonverbal-animal interactions (f= . , p=. ) the presence of a dog can enhance group therapy sessions by encouraging some types of social interaction and storytelling between participants. haughie the use of independent t tests revealed that there was a significant difference between (i) the baseline and the dog intervention (t = — . , d.f. = . , p < — . , -tailed) and (ii) the baseline data and the photographs intervention, (t = - . , d.f. = . , p < . , -tailed). there was also significant difference in the level of interaction between dog interaction and photographic intervention (t = . , d.f. = . , p < . , -tailed) with the presence of the dog having a higher effect. the presence of a companion pet can increase social interaction among patients themselves and the patients and the staff. hoffmann mean stai score before the control session was . and after the control session it was . . mean stai score was . before the animal-assisted session and . after the session with the dog. after the assisted animal condition, the stai score was found to be significantly decreased ( z = . ; p= . ) while it remained statistically unchanged in the control session ( z = . ; p= . ) a -minute interaction with a dog was found to significantly decrease anxiety in severely depressed patients. further studies should examine long-term impacts and physiological and psychosocial processes of therapeutic benefit. jasperson ‘tara’ had been disengaged with any group therapies before the intervention with the dog. during the intervention, she appeared to increase in her social interactions and comfort talking to other inmates and staff. animal assisted therapy is helpful for mental health practitioners in prisons looking for ways to improve inmates’ mental health, and coping and social skills. johnson the study found no statistically significant differences within or between groups in mood, sense of coherence or self-perceived health. the dog visit group had numeric increases in their anger ( . , p= . ) and hostility scores, slight increases in the depression/dejection subscale ( . , p= . ), decreased fatigue scores (- . , p= . ), decreased vigor (- . , p= . ) scores, and increased confusion ( . , p= . ) scores post-test, compared with pretest scores, none of which were statistically significant. only half of the participants (n= ) found the dog visiting sessions helpful but the majority (n= ) would recommend them to other patients. there is a need for replication with a larger sample size, longer intervention period and identification of actual benefits received by participants. future studies should also assess the impact of disease progression on test scores during the intervention period. katsinas programme staff reported benefits of better group interaction and use of the dog for guidance by patients who would wander off from the group. the dog provided a sense of safety for some patients who required less supervision as a result. for withdrawn and disoriented patients, the dog offered helpful stimulation and reorientation to the environment by approaching and nudging patients for a response. the presence of the dog also helped patients with orientation to time as they related its presence to particular days of the week. the use of a canine was beneficial for both the animal and participants as they formed lasting bonds. the dog facilitated social interaction in the group and offered orientation to dementia patients. kovács on the independent living skills survey, scores were significantly improved after the month animal-assisted therapy had a positive authors, year key findings conclusions period for health (baseline= . ( . ), month= . ( . ), p = . ), money management (baseline= . ( . ), month= . ( . ), p = . ) and domestic activities (baseline= . ( . ), month= . ( . ), p = . ). impact on the living skills of patients with chronic schizophrenia, with significant changes in the activities related to domestic activities and health. strong human-animal bonds can increase participants’ motivation to participate in rehabilitation therapy. kumasaka following intervention, lower face scale evaluations (indicating increased pleasure) were recorded for all participants with a mean score of . (sd= . ) before the activities compared to . (sd= . ) after (p < . ). patients who had previously owned pets or expressed interest or like for animals in general responded particularly well to the activities. the animal-assisted activity was shown to be beneficial to patients’ mood and the study shows the importance of matching animal interventions with participants’ characteristics and previous experience. le roux no significant differences were found between the animal-assisted activity and the control group pre bdi and bai mean scores. however, significant differences were found between pre and post bdi mean scores (z = - . , p = . ) for the aaa group. the introduction of animal-assisted activities can improve depression levels of residents in long-term care facilities. lynch following intervention, mean scores for depressive symptoms significantly improved (from . ± . to . ± . , p < . ) while mean scores of state anxiety also improved (from . ± . to . ± . , p< . ). the study confirms existing research and concludes that pet therapy is a potentially viable treatment for reducing stress and anxiety in hospitalised high-risk antepartum women. it may also be particularly suited as nonpharmacological treatment for other high risk groups. marr, results showed that animal-assisted therapy patients interacted more with other patients than the control group patients (f( , )= . , p= . ). they also showed signs of pleasure more often f( , )= . , p= . ) and showed significant improvement over weeks on the measures for socialization (f( , )= . , p= . ), helpfulness (f( . )= . , p< . ), and cooperativeness (f( , )= . , p= . ). by the end of week , patients in the intervention group also were significantly more active [t( )= . , p= . ; mean (standard deviation) for aat= . ( . ); control= . ( . )], responsive to surroundings [t( )= . , p= . ; aat= . ( . ); control= . ( . )], sociable with others [t( )= . , p= . ; aat . ( . ); control= . ( . )], helpful [t( )= . , p= . ; aat . ( . ); control= . ( . )], likely to interact with other patients [t( )= . , p= . ; aat= . ( . ); control= . ( . )] and were more likely to be smiling and indicating pleasure [t( )= . , p= . ; aat= . ( . ); control= . ( . )]. animal-assisted therapy can have significant benefits to prosocial behaviour in psychiatric patients. it can provide a pleasurable activity and increase social interaction between patients. authors, year key findings conclusions mercer four themes were identified from the interviews: ) sense of responsibility (giving structure to offender’s routine, better motivation for self-care), ) building trust (calmness and trust as rewarding experience and basis for therapeutic relationships with staff), ) enhanced communication (facilitated communication between prisoners and interactions with staff) and ) impact on mood and behaviour (stress reduction, happiness and decrease in self-harm). aat provided a range of social and health benefits to prisoners and improved their relationship with staff. findings further suggest great therapeutic potential for improvement of mood and reduction in aggressive and harmful behaviour. neer in both facilities, attendance frequency for dog activities (was higher compared to other activities (facility : % compared to %, p< . and facility : % compared to %, p= . ). mean systolic blood pressure was significantly lower (p< . ) after dog activities in facility compared to other activities and means for pre- and postactivity blood pressure were also significantly lower (p< . ) for those who received the dog treatment first. similar differences were found in facility but these were not statistically significant. there were no statistical differences in recorded pre- and post-activity blood pressures for either group. at both facilities scores on the hamilton depression scale indicated reductions to depression but group differences did not reach statistical significance. the presence of the dog and ability to interact with it was welcomed by residence and resulted in higher attendance rates compared to other activities. the lack of statistical significance for recorded differences in blood pressure between groups warrants further research with increased sample size and longer periods of interaction with the dog. orlandi patients in the pet therapy group showed a significant reduction in anxiety (mean . before, . after, p< . ) and depression (mean . before, . after, p< . ) after chemotherapy in the a.de.ss.o test. in the control group, similar reduction of anxiety (mean . before, . after, p< . ) was recorded but depression levels were unchanged. levels of aggressiveness decreased in both groups following treatment, while those receiving aat showed a significant increase of arterial oxygen saturation, while it decreased in the control group. the use of animal-assisted therapy can reduce depression in chemotherapy patients and increase arterial oxygen saturation. perelle scores on the patient social behaviour scale increased from pretest (mean . + . ) to midpoint ( . + . , p<. ) and posttest ( . + . , p<. ), decreasing slightly at follow-up ( . + . , p<. ). anovas showed a significant effect of the intervention among men (f= . , p<. ) and women (f= . , p<. ) the introduction of visiting animals in the nursing home improved participants’ self- care and social behaviours. rossetti interviews with the behavioural health staff revealed main themes: ) self-awareness (increased self-awareness, relaxation and focus in staff and more holistic approach to treating patients), ) morale (positive work environment), ) innovative therapeutic strategies (improved social interaction between patients and staff, addition of innovative therapies), ) challenges (required animal care and preparation, time commitments, unpredictable dog behaviour) the use of dogs in the animal-assisted therapy had a positive impact on hospital staff and contributed to a positive work environment and morale. savishinsky volunteers were more likely to visit and spend more time with residents who were less mobile and required greater care. through persistent pet visits, volunteers developed deep and intimate relationships with patients which they found gratifying but also burdensome at times. the presence of the pets offered a sense of security to new volunteers but around % of all volunteers left the pet visits presented valued experiences for both volunteers and residents but many volunteers were not sufficiently trained and prepared for the emotional authors, year key findings conclusions programme after only a few weeks due to various difficulties, including emotional demands, burnout or repetitive nature of the sessions. commitments and challenges in caring for the elderly. sockalingam following the dog therapy and while receiving antidepressants and mood stabiliser, the patient showed improved mood, outlook on life and spontaneous speech. anxiety levels and psychomotor agitation were reduced and his quality of sleep and concentration levels had improved. he also benefited from the physical exercise walking the dog and reported improvements to social interaction, as the dog helped him engage with others. by taking responsibility for the dog, he derived higher confidence and motivation allowing to perform daily tasks more independently. the therapy dog became a valued companion and social facilitator and helped improve the patient’s functioning and well-being. animal-assisted therapy can augment traditional treatments in clinical settings. stasi no significant differences in cirs, adl, iadl, mmse, nutritional status before or after treatment were found between or within both groups. although depressive symptoms improved in the pet therapy group, these were not statistically significant. mean systolic blood pressure in the pet therapy group was reduced following intervention (from . , sd= . to . , sd= . , p< . ). introducing animals to care settings can improve patients’ depressive symptoms and significantly reduce their blood pressure. turner seven themes were identified: ) patience; ) parenting skills; ) helping others; ) increased self- esteem; ) social skills; ) normalizing effect; ) calming effect on the environment. the findings suggested the animals had a beneficial effect on offender rehabilitation. improvements in self- esteem and prosocial views were suggested by the authors to be the most important improvements. walsh following intervention, a significant increase on the coopersmith self-esteem inventory was found (t ( )= . , p= . ) as well as a significant reduction on the ipat depression scale (td?( )= . , p= . ). all participants appreciated their involvement in the programme and reported that it provided them with a useful and physically engaging work task away from the main prison population. the training of animals by women prisoners can improve their self-esteem and reduce levels of depression. winkler although half of the residents had concerns about introducing a dog before the programme, when questioned again weeks after its arrival, their concerns subsided. while just over half of the residents responded that they liked the dog, one third felt that the dog disliked them. overall, of the residents saw the dog as beneficial to others. in contrast, of the staff members believed that the dog had made a difference to residents and reported that they themselves had benefited from its presence. weeks after the dog’s arrival, residents’ solitary behaviours decreased by % but returned to original levels after weeks. likewise, relative frequency of dyadic or group behaviours increased in the initial weeks period ( . % and , % respectively) but had also dropped again towards the end of observation. the introduction of the dog to the nursing unit was viewed favourably by both residents and staff, although staff were more likely to report benefits. despite being a catalyst to social interaction and increasing the frequency of group activities, behavioural changes were not permanent. zisselman no significant changes in multidimensional observation scale for eldery subjects (moses) subscale scores were found within or between the intervention and control group. however, those receiving although no significant treatment difference between pet therapy and authors, year key findings conclusions the pet therapy were less likely to show irritable behaviour after the intervention (p < . ) but anova tests found no relationship between experimental or control group membership and change in irritability score (f = . , p < . ). exercise was found, improvement in irritable behaviour scores following dog therapy came close to statistical significance, warranting more research. supplementary table s . study design, methods, and intervention details (care farming) authors, year design methods intervention details care farming berget observational study with before-after questionnaires video-recorded observations of behaviours with animals, classified as: physical contact; communication; moving the animals; feeding; go/stand/run; cleaning; milking; receiving instructions; various; threatening behaviour from animals. five psychiatric instruments were used: stai; beck depression inventory; general self- efficacy; coping strategies scale of the pressure management indicator; quality of life scale (norwegian). differences in means were analysed by matched paired t-tests, and correlations between psychiatric instrument scores and behaviours were examined. privately owned farms including dairy farms (n= ), meat production (n= ), sheep farms (n= ) or horses (n= ). participants visited the farms for hours, twice a week, over weeks to assist with farming activities. elings qualitative, thematic analysis eight focus groups on different care farms, involving a total of participants. topic guide used to structure discussions, thematic analysis. various types of care farms in the netherlands. ellingsen-dalskau qualitative, hermeneutic phenomenology semi-structured interviews (n= , to minutes) with people who were out of paid work, and had been working on care farms for > month. self-determination theory was used in the analysis. transcribed interviews were stored on nvivo and analysed using ‘green work’ pre-vocational training provided by the norwegian labour and welfare administration. commercial farming activities designed to support mental health. authors, year design methods intervention details giorgi’s method of systematic text condensation. hassink qualitative, thematic analysis semi-structured interviews with care farmers, other farm workers, and clients. thematic analysis and comparison of themes between the above groups. care farms supporting people with mental illness (n= ); youth (n= ) and frail elderly people (n= ). the farms offered a variety of day care or hour programmes, hine survey of uk care farm facilities and before-after study of seven care farms the survey was designed to elicit characteristics of care farms in the uk. a mixed-method, before-after study of care farm clients was also undertaken, comparing before-after scores on mood disturbance and self-esteem (rse). qualitative data was collected on what participants enjoyed the most about the care farms. care farms around the uk, with various farming activities for people recovering from drug use, ex-offenders, unemployed, homeless, or recovering from illness. iancu qualitative, thematic analysis semi-structured interviews with care farm users recruited through purposive, maximum variation sampling. interview guide covered reasons for attending, changes they hoped to achieve, and experiences with the services. transcripts were entered in atlas.ti software and subject to open coding, axial coding, and selective coding. care farms in two provinces in the netherlands. one was owned by a mental health organisation, the remaining were privately owned. the main activities were agricultural production (n= ), training and preparation for the labour market (n= ), and daytime activities for supported housing residents (n= ). the comparator intervention was day centres offering a range of work and creative projects. pedersen qualitative case study semi-structured interviews (n= ) thematic analysis over a week period, participants engaged in a range of activities on the dairy farm twice a week in close contact with the farm animals, including grooming, mucking, feeding, taking care of the calves and milking. pedersen pretest-posttest video recordings questionnaires: beck depression inventory (bdi-ia), state-trait anxiety inventory-state subscale (stai-ss), generalized self-efficacy scale (gse) over a week period, participants worked at dairy farms in close contact with the farm animals in sessions lasting between . and hours twice a week. activities included fetching feed, cleaning, milking, feeding and talking to animals and farmers. supplementary table s . key findings and conclusions (care farming). authors, year key findings conclusions care farming berget analysis of video recordings of participants’ work intensity and exactness when working with animals both increased by the end of the intervention (both, p<. ). work intensity correlated with increased self-efficacy (r- . , p<. ) and decreased anxiety (r- . , p<. ) occupational therapy with farm animals may be beneficial to some people with psychiatric disorders. elings participants appreciated their stay on the farm in terms of social contact, freedom/ space, and the experience of useful activities. the daily routine of the care farm gave participants a ‘rhythm’, and helped them stay away from areas where they were tempted by drugs and alcohol. however, they still had difficulties formulating longer-term occupational plans. care farms are valued by people with psychiatric illness and drug and alcohol problems; however, they have limited effect in helping longer-term occupational change. ellingsen-dalskau five themes were derived: . structure and flexibility; . understanding and acknowledgment; . guidance and positive feedback; . nature and animals; and . reflections on personal functioning and the future. the daily routines of the care farm, and engagement with nature, can promote autonomy and support people’s transition back into work. hassink participants across a range of care farm types valued: the sense of community on the farms; the attitude of the farmers (being treated as equals and as ‘normal’ people); being able to challenge their capabilities; the quietness; and the distance from everyday life. the components of the green farm leading to therapeutic benefits are reiterated. care farms focus on the empowerment of clients. iancu the transition from past to current lives, and the recovery process, was described by examining life before the care farm (occupational disruption, isolation, lack of activiites, preoccupation with disorder, disorganised lives), goals (occupational functioning, participation, interpersonal functioning, managing one’s symptoms, being in nature), and life after the care farm ( a nonlinear process of finding internal motivation, and undertaking social roles). care farms are a viable way to help pepe with mental health difficulties to find meaning and become accepted in a community of peers. pedersen all participants described the farming experience as positive, and even described it as turning point in their recovery. major themes emerged in the interviews with several subthemes: ) ordinary life (intervention provided sense of normal working life), . ) ordinary work (experience of work setting and routine), . ) being appreciated (feeling appreciated by animals and farmers), . ) being a colleague (feeling included and respected by co-workers), ) being sick (recognition of needs and distraction), . ) considerate relations (close and open relationship with farmers), . ) closeness, warmth and calmness (physical contact with animals), . ) forget my difficulties (distraction from illness and pain), . ) kept me going (improved resilience and coping), ) flexibility (adjustments of work according to needs), ) coping (sense of accomplishment, independence and new skills), flexibility around work activities and attention to individual needs were central to successful mental health rehabilitation at the care farm. participants particularly appreciated contact with farm animals and working in a stress-free environment can give a sense of ordinary life and improve mental wellbeing. pedersen compared to the start of the intervention, participants spent more time working with the animals in the final weeks (work total of . %, se= . in early phase and . %, se= . in late phase), while inactivity ( . %, se= . in early phase and . %, se= . ) and dialog with farmer ( . %, performing challenging and complex work tasks at the dairy farm can result in a decline in depression, and state-anxiety authors, year key findings conclusions se= . in early phase and . %, se= . in late phase) decreased. depression scores on the bdi-ia scale decreased from . (se= . ) at the start of intervention to . (se= . ) at the end, while anxiety levels also decreased by . points and generalized self-efficacy scores were improved from . (se= . ) to . (se= . ). there were significant negative correlations between anxiety and milking procedures (r = – . , p = . ) and moving animals ( r = – . , p = . ). pure animal contact however was positively correlated with depression levels, although not quite statistically significant (r = . , p = . ). symptoms, whereas work-unrelated animal contact and beginners’ activities did not result in the same benefits. close contact and dialogue with the farmers can also improve anxiety and depression and help participants develop new skills. bdi, beck depression inventory; bsi, brief symptom inventory; cmai, cohen-mansfield agitation inventory supplementary table s . study design, methods, and intervention details (virtual reality-based) authors, year design methods intervention details virtual reality-based alvarsson pretest-posttest skin conductance level (scl) was used to index sympathetic activation, and high frequency heart rate variability (hf hrv) was used to index parasympathetic activation. after an arithmetic stress test, participants were exposed to one of noises: ) nature sound, ) high noise, ) low noise, ) ambient noise annerstedt experimental, lab-based study comparison of two vr-based natural environments (with or without natural sounds) and one control condition. stress- related outcomes (cortisol, heart rate, t-wave amplitude, heart rate variability) compared with anova virtual reality environment including trees in a forest surrounding a path leading to a stream of water, reminiscent of a natural setting in scandinavia de kort pretest-posttest measurement of self-reported affect and presence using the itc-sense of presence participants were seated in the lab room, completed the stress test (mpatest) and were then shown a nature-based authors, year design methods intervention details questionnaire and heart period and skin conductance level film for mins on either a large ” screen (high immersion) or small ” screen (low immersion). supplementary table s . key findings and conclusions (virtual reality-based). authors, year key findings conclusions care farming alvarsson participants perceived nature sounds as more pleasant than the noises and recovery of skin conductance level (scl) was faster during exposure to the nature sound than to the three noise conditions. pairwise comparisons (t-tests) showed that mean scl was lower for nature than high noise (p = . ); however, the differences between nature and the other two noise conditions did not reach significance (p > . ). average heart rate variability (hrv) values were not higher for nature sound than for the other sounds, and hf hrv for the high noise was not substantially lower than for the other sounds. nature sounds may enable faster recovery of the sympathetic nervous system compared to less pleasant noise of lower, similar, or higher sound pressure level. annerstedt anova results showed a main effect of condition (control, vr forest – sound; vr forest + sound) on stress as measured by cortisol (f( . ) = . , p<. ) stress recovery can be facilitated by the addition of sounds of nature to a virtual green environment in a lab setting de kort both physiological measurements showed that immersion enhances restorative effects of a virtual natural environment. no significant differences in recovery of affect appeared between the two immersion conditions. an interaction was found between screen size and restorative phase on heart period and skin conductance level, indicating stronger restoration for the immersive screen condition over time. immersion enhances restorative potential of a mediated natural environment. appendix . search history d atabase keyword s hits cinahl limiters: english language, academic journals ( well?being or "quality of life" or mental health or anxiety or stress or depression or proms ) or ( "social skills" or social development or social interaction or sociab* ) or ( "group activit*" or employab* or recidivism ) or horticult* or "therapeutic landscap*" or ecotherapy or "natural environment" or "green w environment" or "conservation* activit*" or litter or garden* or "green care" or plant* or forest* or "green gym" or nature?assisted or nature?based or "green environment" or "green space" or parks or outdoor or biophilia or animal?assisted or "pet therapy" or "prison?based animal" or pet?facilitated or "care farm*" or livestock or wildlife and ( well?being or "quality of life" or mental health or anxiety or stress or depression or proms ) or ( "social skills" or social development or social interaction or sociab* ) or ( "group activit*" or employab* or recidivism ) and prison* or inmates or incarcer* or offend* or ( correction* or penal or detention* or penitentiary or jail or parole ) or ( "community service" or rehab* or referral ) or school* or ( university or college or campus ) or ( pupils or students or children ) or institution* or hospital or patient medline (via cinahl) limiters: english language, academic journals, subject headings narrow by subjectmajor: - occupational health services narrow by subjectmajor: - mental health services narrow by subjectmajor: - environment narrow by subjectmajor: - dementia narrow by subjectmajor: - cognition disorders narrow by subjectmajor: - community mental health services narrow by subjectmajor: - stress, physiological narrow by subjectmajor: - substance-related disorders narrow by subjectmajor: - employment narrow by subjectmajor: - pain narrow by subjectmajor: - stroke rehabilitation narrow by subjectmajor: - stress, psychological narrow by subjectmajor: - health promotion narrow by subjectmajor: - depression narrow by subjectmajor: - phytotherapy narrow by subjectmajor: - disabled persons narrow by subjectmajor: - activities of daily living narrow by subjectmajor: - conservation of natural resources narrow by subjectmajor: - walking narrow by subjectmajor: - occupational diseases narrow by subjectmajor: - mental disorders narrow by subjectmajor: - 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penitentiary or jail or parole ) or ( "community service" or rehab* or referral ) or school* or ( university or college or campus ) or ( pupils or students or children ) or institution* or hospital or patient criminal justice abstracts limiters: english language ((prison* or hospital or institution* or inmates or incarcer* or offend* or (correction* or penal or detention* or penitentiary or jail or parole) or ("community service" or rehab* or referral)) and ((horticult* or ("therapeutic landscap*" or ecotherapy or "natural environment" or "green w environment" or "conservation* activit*" or litter) or (garden* or "green care" or plant* or forest* or "green gym") or (nature?assisted or nature?based or "green environment" or "green space" or parks or outdoor or biophilia) or (animal?assisted or "pet therapy" or "prison?based animal" or pet?facilitated or "care farm*" or livestock or wildlife)) and (prison* or hospital or institution* or inmates or incarcer* or offend* or (correction* or penal or detention* or penitentiary or jail or parole ) or ( “community service” or rehab* or referral ) and ( well?being or "quality of life" or mental health or anxiety or stress or depression or proms ) or ( "social skills" or social development or social interaction or sociab* ) or ( "group activit*" or employab* or recidivism ) psycinfo ((horticult* or "therapeutic landscap*" or ecotherapy or "natural environment" or "green care" or garden* or "green gym" or nature?assisted or nature?based or "green environment" or "green space" or biophilia or animal?assisted or "prison?based animal" or "pet therapy" or pet?facilitated or wildlife or livestock) and peer(yes)) and ((prison* or institution* or inmates or incarcer* or offend* or correction* or penal or detention* or penitentiary or jail or parole or "community service" or rehab* or referral) and peer(yes)) scopus ( title-abs-key ( ( well?being or "quality of life" or mental and health or anxiety or stress or depression or proms ) or ( "social skills" or social and development or social and interaction or sociab* ) or ( "group activit*" or employab* or recidivism ) ) ) and ( ( title-abs-key ( prison* or hospital or institution* or inmates or incarcer* or offend* or ( correction* or penal or detention* or penitentiary or jail or parole ) or ( "community service" or rehab* or referral ) ) ) and ( ( title-abs-key ( horticult* ) or title-abs-key ( "therapeutic landscap*" or ecotherapy or "natural environment" or "green environment" or "conservation* activit*" or litter ) or title-abs-key ( garden* or "green care" or plant* or forest* or "green gym" ) or title-abs-key ( nature?assisted or nature?based or "green environment" or "green space" or parks or outdoor or biophilia ) or title-abs-key ( animal?assisted or "pet therapy" or "prison?based animal" or pet?facilitated or "care farm*" or livestock or wildlife ) ) ) ) and ( limit-to ( doctype , "ar" ) ) social care online allfields:'horticult* or "therapeutic landscap*" or ecotherapy or "natural environment" or "green care" or garden* or "green gym" or nature-assisted or nature-based or "green environment" or "green space" or biophilia or animal-assisted or "prison-based animal" or "pet therapy" or pet-facilitated or wildlife or livestock' - and allfields:'prison* or institution* or inmates or incarcer* or offend* or correction* or penal or detention* or penitentiary or jail or parole or "community service" or rehab* or referral' ] cochrane central 'horticult* or "therapeutic landscap*" or ecotherapy or "natural environment" or "green care" or garden* or "green gym" or nature?assisted or nature?based or "green environment" or "green space" or biophilia or animal?assisted or "prison?based animal" or "pet therapy" or pet?facilitated or wildlife or livestock in title, abstract, keywords and prison* or institution* or inmates or incarcer* or offend* or correction* or penal or detention* or penitentiary or jail or parole or "community service" or rehab* or referral in title, abstract, keywords and well?being or "quality of life" or mental health or anxiety or stress or depression or proms or "social skills" or "social development" or "social interaction" or sociab* or "group activit*" or employab* or recidivism in title, abstract, keywords in trials' total duplicates removed (endnote/covidence) covidence import for screening at title/abstract other reviews d atabase keyword s hits cochrane library 'horticult* or "therapeutic landscap*" or ecotherapy or "natural environment" or "green care" or garden* or "green gym" or nature?assisted or nature?based or "green environment" or "green space" or biophilia or animal?assisted or "prison?based animal" or "pet therapy" or pet?facilitated in title, abstract, keywords of which: cochrane reviews ( relevant) other reviews ( relevant) manual searches reference lists, internet searchers manual searches source hits reference lists (n= ) a doggone good idea! a beagle is the face - and waggy tail - of a new service to help anxious patients in suffolk. six-year-old basil’s job is to provide patients with comfort and companionship, distracting them from their anxieties. s enior dental nurse jacci plant is the owner of basil the beagle and came up with the idea of offering pet therapy. she underwent training and now has the title of animal assisted practitioner. together, she and basil provide one to one therapy, meeting patients in the practice waiting area and then going into the appointment with them. said jacci: ‘i will be in the surgery with him and he will sit beside the chair, he’s quite a solid little chap so may be a bit heavy to sit on someone’s lap!’ ‘pet therapy is something i have always been interested in and i knew basil has the ideal laid-back temperament to make a fantastic therapy dog. i also knew that pet therapy worked well in other clinical settings or where people have additional needs such as mental health issues or learning disabilities.’ having basil as a therapy dog is a pilot scheme but jacci says there has already been a lot of interest when she has been in the dental practice. there are no cross infection control implications as a therapy pet has the same classification as a guide dog. jacci works with the community dental service community interest company (cds-cic) in suffolk. cds-cic, which operate eight clinics across the county, are starting a pilot of the pet therapy programme in selected locations and identifying patients who may benefit from being accompanied by basil during their treatments. amy schiller, operations director said: ‘we provide special care and paediatric dentistry and many of our patients, adults and children, have additional needs or severe dental anxiety and may require extensive treatment. reducing anxiety is very important and basil will be one technique we can use to help patients relax and feel more comfortable about having treatment. overall this is important, because with some patients it may make all the difference between being able to tolerate treatment without more invasive means such as sedation.’ a doggone good idea! gdc goes undercover to prosecute beautician a sussex woman, katie ensell, has been ordered to pay almost £ , by hastings magistrates’ court after being prosecuted and pleading guilty to offering illegal tooth whitening treatment through her business, kt’s cosmetics. the fine included £ for each of her two offences – unlawfully holding herself out as being prepared to practise dentistry and unlawfully carrying out the business of dentistry - and gdc costs of £ . . the general dental council (gdc) launched an investigation after a complaint about ms ensell was made in march last year. she told undercover investigators that she could provide them with tooth whitening using the hollywood whitening system. the gdc say that under the dentists act and following the high court’s ruling in gdc v jamous, the legal position in relation to tooth whitening is very clear. the treatment can only be performed by a dentist or a dental therapist, dental hygienist or a clinical dental technician working to the prescription of a dentist. katie spears, head of in-house appeals and criminal enforcement at the gdc said: ‘when we receive a report of illegal practice, we seek to educate those involved about the dangers and the law in relation to tooth whitening. where our efforts are ignored, as in the case of ms ensell, we will, where appropriate, prosecute in the criminal courts. © m as ha _t ac e/ is to ck /g et ty im ag es p lu s © br ue v/ is to ck /g et ty im ag es p lu s news bdj team www.nature.com/bdjteam © british dental association. all rights reserved. 	a doggone good idea! microsoft word - document 	
   	
   inventing japan’s ‘robotics culture’: the repeated assembly of science, technology, and culture in social robotics selma Šabanović school of informatics and computing, indiana university, bloomington in, usa abstract using interviews, participant observation, and published documents, this paper analyzes the co- construction of robotics and culture in japan through the technical discourse and practices of robotics researchers. three cases from current robotics research – the seal-like robot paro, the hrp- humanoid, and ‘kansei robotics’ – are presented as examples of the ways in which scientists invoke culture to provide epistemological grounding and possibilities for social acceptance of their work. these examples show how the production and consumption of social robotic technologies are associated with traditional crafts and values, how roboticists negotiate among social, technical, and cultural constraints in the course of robots design, and how humans and robots are constructed as cultural subjects in social robotics discourse. the conceptual focus is on the repeated assembly of cultural models of social behavior, organization, cognition, and technology through roboticists’ narratives about the development of advanced robotic technologies. this paper provides a picture of robotics as the dynamic construction of technology and culture, and concludes with a discussion of the limits and possibilities of this vision in promoting a culturally situated understanding of technology and a multicultural view of science. keywords robotics, culture, japan, social robots, co-construction of culture and technology address: indiana university bloomington, school of informatics and computing, e. th street room , bloomington in , usa email: selmas@indiana.edu 	
   	
   the notion that robots hold a special place in japanese culture is well established in popular discourse and receiving increasing scholarly and critical attention. in the s, japan was named the ‘robot kingdom’ (schodt, ) to mark its global leadership in industrial robotics and a seemingly unique propensity to accept robotic companions and partners. today, japan is referred to as a place where people are ‘loving the machine’ and robots are ‘priceless friends’ (hornyak, ). some scholars point to specific cultural factors, such as shinto animism and favorable media representations of robots, to explain the predominantly positive popular image of robots in japan (e.g. geraci, ; kaplan, ; kitano, ). cross-cultural research on people’s perceptions of robots, however, challenges the assumption that the japanese public is peerlessly accepting of robots (e.g. bartneck et al, ; macdorman, ). furthermore, critical studies of robotics in japan suggest that the presentation of robots as endemic to local culture is the product of continuing efforts by the government, industry, and academia to encourage popular acceptance of robotics (ito, ; wagner, ), which can reproduce conservative social values obscured by technologically advanced visions of robots in society (robertson, , ). this paper seeks to further our understanding of the co-construction of robotics and culture in japan by analyzing how robotics researchers, as sociotechnical ‘imagineers’ (rossini in robertson, : ), explicitly invoke the notion of culture in their technical discourse and practices, and how they situate their research within a local cultural frame while participating in the global development of robotic science and technology. culture and technology in ‘the age of robots’ from march to september , aichi prefecture hosted the world expo – the first world fair of the st century – in which the japanese government, companies, and scientists displayed their 	
   	
   ‘future imaginaries’ (fujimura, , p. ) of technology in japanese society. held in aichi prefecture, the hub of japan's automotive industry, and visited by over million people (including myself), the expo featured approximately one hundred different robots and functioned as a large-scale field test of life ‘in the robot age’. the ubiquity of robots at the expo, where visitors could see them cleaning, giving directions, providing security, and taking care of children, reflected the ministry of economy, trade, and industry’s (meti) plan to develop ‘partner robots’ for the general public as a key growth industry for st century japan (kusuda, : ). the japanese robotics association (jara) and the new energy and industrial technology development organization (nedo) developed special safety guidelines for the event, so that visitors would not experience any mishaps that might ‘hinder a healthy penetration of robots into human lives’ (hara, ). the aichi expo therefore represented both a conceptual blueprint and partial materialization of japan’s developing ‘robotics culture’. along with presenting robots as part of everyday life, the expo emphasized the necessity of grounding the development of technology in local cultural values. aichi was built to represent a ‘global laboratory’ for re-connecting technology with the positive essence of local tradition in a ‘site alive with the spirit of the ancient arts’ and freed from the ‘unthinking pursuit of efficiency and economic rationality,’ where ‘ancient tradition ensures that the new art of life arising from the marriage of technology and culture is already part of everyday life here.’ several karakuri ningyo, mechanical dolls developed during the edo period ( - ), were displayed prominently at the entrance to the expo’s robot pavilion as precursors to contemporary robots, representing the continuity between japanese history and its robotic future. the japan pavilion (nipponkan), powered by renewable energy sources and housed in a traditional bamboo structure from the edo era woven into a modernist pod-like shape (see figure ), presented a fusion of 	
   	
   ‘traditional techniques’ and ‘cutting edge technology’ in service to society. at the entrance to the pavilion, visitors could interact with paro, a socially assistive robot resembling a baby seal and used in eldercare (see figure ). inside, the social and technical changes japan has undergone in the past fifty years were presented by photographs juxtaposing the country’s rural history with its urban present, a collection of household appliances from decades past alluding to shifts in living circumstances, and on-screen visualizations displaying increases in transportation, migration, and electricity consumption. though technologically optimistic, the expo’s message cautioned that the societal benefit of technology depends on its fit with the natural and social environment. the event represented japan as a place in which technology is in harmony with cultural values and traditions, without explicitly referencing the societal and ecological upheaval that has accompanied technological development in the japanese archipelago. figure . the seal-like therapy robot paro (left) fuses natural inspiration, advanced technology, and socially beneficial application befitting nipponkan (right), where it was the only robot on display. 	
   	
   the aichi expo’s fusion of advanced technology, cultural tradition, and future projection exemplifies a broader ‘foundational schema’ (shore, ) in japan, which legitimizes the development and adoption of emerging technologies through association with traditional practices and cultural continuity. the resulting discourse interweaves the past, present, and ‘future anterior’ – a space in which how we define the associations between past and present sets up the structure and experience of ‘what will have been’ (fortun, ) – to create a cultural logic supportive of current sociotechnical developments. the result is the construction of ‘invented traditions’ (hobsbawm, ) that present today’s socially desirable institutions, ideas, and technologies as age-old phenomena ‘handed down from generation to generation’ (vlastos, : ). for example, the affiliation between karakuri ningyo and robotic technology, despite contemporary claims to the contrary, is relatively recent – the mechanisms had fallen into relative obscurity (wagner, : ) before resurfacing in the s as counterevidence to assertions that japanese technological development was driven by innovations produced elsewhere (ito, ). similarly, popular images of robots in the s showed threatening machines coming to japan from abroad, in contrast to the friendly robots that are described as the cornerstone of japanese robot culture today (ito, ). while the aim is to inspire optimism and feelings of safety through the semblance of cultural continuity, these associations between invented traditions and advanced technology suggest underlying concerns about the potential negative consequences of emerging robotic technologies and their applications in society. at the same time, the depiction of technological development as the natural continuation of existing cultural practices, obscures such concerns from view and obviates their public discussion. recognizing the broader social and cultural context in which robotics is developing in japan, this paper focuses on analyzing how robotics researchers co-construct japanese culture 	
   	
   and robotic technology through their discourse and practices. interviews with social robotics researchers in japan and participant observation in the field provide empirical sources for three cases from current robotics research – the seal-like robot paro, the hrp- humanoid, and ‘kansei robotics’. i present these cases as examples of robotics culture in the making, in which robots are culturally situated artifacts and contribute to the societal fit of robotic technology in japan. by examining the origin story, fabrication process, and design philosophy of the therapy robot paro, i show how the production and consumption of social robotic technologies is associated with traditional crafts and values, and how tradition is redefined to include new technological materials and practices. i analyze the design of the hrp- humanoid and its performance of traditional dance to portray how roboticists negotiate among social, technical, and cultural constraints while attempting to create a humanoid for everyday use. finally, the case of kansei robotics, in which robots are designed not only to appear to have emotion but to evaluate the world subjectively, displays how japanese robotics researchers co-construct humans and robots as cultural subjects by referencing culturally specific notions of intelligence and interaction.	
  all three examples give insight into how the cultural roots of japanese robotics science are being defined locally as well as in the international scientific community. conceptually, i focus on the various ways in which roboticists integrate and construct ‘cultural models’ – practices, artifacts, and concepts shared by members of a culture that provide an interpretive filter through which the world is meaningfully perceived and can be acted upon (shore, ) – in their research. cultural models can be studied both as ‘public artifacts ‘in the world’’ and as ‘cognitive constructs ‘in the mind’ of members of a community’ (shore, : ); this paper refers to robotic technologies that can be observed firsthand and ideas about robots and their relationship to society that can be inferred from the practices and statements of 	
   	
   researchers. i argue that, by specifically relating the applications and interactive capabilities of their robots to practices, beliefs, and social norms they consider to be culturally normative, robotics researchers ‘repeatedly assemble’ (caporael, ) cultural models of cognition, sociality, human relationships with technology, and technology’s role in society. the notion of repeated assembly calls attention to the dynamic mutual constitution of human ideas, beliefs and practices and technological designs as expressions of and affordances for cultural reproduction. the normative cultural meanings and practices robotics researchers use to situate their work are in turn redefined through embodiment in new types of human-machine interactions and relationships (suchman, ; turkle, ). these repeated assemblies are mutative, rather than identical, reproductions; they do not produce simple copies of existing cultural and technological forms, but represent the recursion of core cultural models as they dynamically change and adapt to fit contemporary circumstances. this framework is particularly apt for analyzing the development of robot cultures in japan because it allows us to interpret culture not as an unchanging factor, which in the terms of the dominant foundational schema ‘precedes and frames technology, informs its ideology, grants it power, and, alternatively, generates contests over its own meaning’ (najita, : ), but as cultural models developed through the dynamic co-construction of robotic technologies and related practices, values, beliefs, and interactions. in the study of science and technology, self-reflective or explicit cultural interpretation is generally a critical move applied to technoscience from the outside, rather than an internal discourse constructive of the field such as the one being developed in robotics in japan. scholars of ‘nascent robotics cultures’ (turkle, : ) have focused on reconfigurations of the human/machine boundary in the development of social and interactive robots to critique the dominant ways of thinking about humanity, intelligence, and sociality in the artificial 	
   	
   intelligence and robotics communities (robertson, ; robertson, ; suchman ; turkle, ) and to rethink existing social and cultural norms regarding embodiment, sociality, and humanness (e.g. alač, ; castaneda, ; suchman, ). this paper expands on existing interpretive studies of robotics by analyzing the explicit ways in in which roboticists define ‘japanese culture’ and use it to make sense of and legitimize their research. i describe the explicit roles ascribed to culture in the development of robotics technologies and show how multiple cultural models are defined and materialized through robotics practice. i also discuss how cultural work performed by robotics researchers defines behavioral and conceptual norms that constrain interaction with and around robots and the future possibilities for emerging robotic cultures. finally, i analyze the construction of robot cultures as an analytical category through physical and discursive presentations of the relationships between technology, culture, and society and with particular attention to the social values, beliefs and attitudes that are integrated into robotics research. methodological approach this paper is based on data collected starting in the spring of , when i spent four months in japan as a visiting researcher at the intelligent systems institute in the national institute of advanced industrial science and technology (aist) in tsukuba, japan. my aim was to study how roboticists design socially interactive robots and define sociality in their research as a participant observer. most of my time was spent in the paro laboratory, where i participated in daily research tasks with other lab members. i also interviewed and observed the researchers working on hrp- , a humanoid robot designed to assist people in construction, dangerous environments and the home, and traveled to visit sixteen other social robotics labs in japan to 	
   	
   interview twenty-five researchers about their work. since then, i have been professionally involved in the social robotics and human-robot interaction communities, and continued my participatory studies of social robotics through interviews with roboticists and participation in conferences and other public events relating to robotics. i am currently working on a collaborative project with dr. takanori shibata, paro’s designer. the insights presented here therefore include information gleaned through my initial interviews with roboticists in , as well as in later conversations and activities i had a chance to observe, up to the present. the discussions and interviews i report in this paper were performed in english; the research participants, established researchers in academic, government, or corporate laboratories, were all conversant in the language. being an english-speaking researcher functioned as an unspoken prompt for learning about the cultural underpinnings of japanese robotics, cueing my interviewees to describe in detail what they saw as the specifics of their culture and its relation to robotics. interview questions included basic demographic information, as well as queries about the person’s early knowledge and impressions of robots, applications of robots they saw as important, societal issues related to robotics, and more specific discussions regarding projects the participants worked on. i did not specifically ask or prompt interviewees to talk about culture in the interviews; roboticists themselves generally initiated the discussions concerning cultural aspects of robotics described below in the course of our interviews. the interview participants were aware that i was doing a comparative study of social robotics in the us and japan, and that i would therefore be interested in discussing cultural differences. while this might suggest that the connections being made between culture and technology were part of a cultural performance put on by the interviewees, the additional information gained through long term participant 	
   	
   observation and examination of robotics publications and other documents confirms that concerns with the cultural aspects of robotics occurred outside of the interview context. after transcribing the interviews, i openly coded the interview data, my notes, and other documentation to find recurrent themes. in this paper, i present instances in which roboticists specifically discuss and embody ‘culture’ in robotics research and unpack how the notions of culture and robotics technology are used and defined in the process. the three main examples in this paper – the robot paro, hrp- , and kansei robotics – represent cases for which i was able to collect the most thorough data on the way in which robotics researchers associate cultural factors with their work, the two robots being situated in the institution in which i was doing participant observation, while the third topic is the subject not only of interviews, but also of presentations and publications produced by robotics researchers. crafting robots the socially assistive robot paro (figure ) was designed by dr. takanori shibata to resemble a baby harp seal and is used in a manner similar to pet therapy, primarily with older adults. paro is currently in use in thirty countries around the world and has been commercially available in in europe and the us since , and in japan since , where about paro have been sold. contrasting with paro’s global reach and acceptance, dr. shibata described the robot’s design as a continuation of the local traditions of craftsmanship and appreciation for quality of his hometown, nanto city. i travelled to nanto city with dr. shibata in june during a series of site visits for our collaborative study on the therapeutic uses and user perceptions of paro in the us and japan. the two-week japan-wide tour included visits to nursing homes, hospitals, a children’s 	
   	
   home, and group homes and temporary shelters for survivors of the tsunami, all of which either already had or planned to obtain paro. in nanto, we visited sites involved in the robot’s production, including the headquarters of intelligent systems co. ltd., the company behind paro’s commercialization, and the factory where paro is manufactured. dr. shibata also took us to the suganuma and ainokura villages to learn about traditional silk and gunpowder production, the town museum to see elaborately decorated hikiyama festival floats, an etchu gokayama washi paper studio, and inami wood carving shops where we observed local artisans at work. during the trip, dr. shibata explained not only the technical aspects of paro’s construction, but also the broader social and cultural significance of its design and use. each paro unit is delivered with a birth certificate (figure ), styled after a japanese family registry document and designating nanto city as the robot’s birthplace. the local authorities reciprocally celebrate paro’s place in the local economy. the robot is prominently displayed in the nanto silk museum, which documents the silk weaving industry as a mainstay of the regional economy over centuries (see figure ). the factory where paro robots are produced is housed on the site of an old silk manufacturing plant, built when the industry switched from manual to automated production methods. the robot therefore both materially and symbolically represents nanto’s economic development and its potential to attract and support new high tech industries. our visit to a local nursing home which had been using paro for over nine years displayed how paro’s design reflects local social issues as well. the nanto region, where adults over years of age comprise % of the population, is seen as a model and testing ground for the future of japan’s aging society. nursing home staff described the many challenges of their work, particularly the lack of sufficient manpower to provide person-centered care and enable elders to age in place, and gave examples of how they used paro in their daily activities 	
   	
   to entertain older adults who were too weak to do physical exercise, or to curb wandering in cognitively impaired residents. nanto city is therefore a prime site for observing the ongoing development of a robot culture that can support paro’s adoption and use in society. figure . the seal-like robot paro displayed on top of locally woven silk cloth in the nanto city silk museum next to local mascot nanto-kun (photo credit: wl chang), and paro’s ‘birth certificate’. the focus on quality in paro’s production process provides a further bridge between local economic traditions and new manufacturing technologies. in our discussions, dr. shibata compared the workmanship involved in producing paro to a long tradition of local craft making. while visiting suganuma and ainokura villages, we learned that the area’s saltpeter (an ingredient for gunpowder) was of such high quality that the governing maeda family allowed villagers to use it instead of rice to pay part of their taxes; the imperial family is said to purchase locally produced washi paper. in the paro factory’s conference room, dr. shibata pointed out a set of circuit boards in a glass case and mentioned they were produced in a strict quality- controlled process for use in luxury cars. paro’s microcontrollers are fabricated in a similarly quality-controlled, fully automated process that can handle components ‘too small for the human 	
   	
   eye to see’. two workers manually assemble individual paro units from a collection of over parts, which include pieces contributed by companies around the world as well as those produced in nanto city. as a finishing touch, workers manually attach and trim each paro’s fur covering, giving every unit a unique appearance noticed by long-term users. attention to detail and quality is further exemplified by the sustained work that dr. shibata has done on paro’s design, which has been perfected since in more than eight iterative versions. along with the emphasis on production quality, paro’s design also invokes specific cultural models of consumption, which value the high quality and longevity of artifacts above the article’s price (paro costs around yen in japan and $ in the us). as we watched an artisan carving intricate flowers from a piece of wood in a small nanto city inami shop, dr. shibata explained that many local residents purchase such pieces for their homes despite their high cost, because they can appreciate the skill and time that goes into their creation. a few minutes later, in front of the betsuin zuisenji temple gates laden with inami carvings, he compared people’s ability to value such woodwork with their appreciation of paro. this suggests that paro’s design assumes a particular type of user – one who can recognize and afford high quality products and expects to use technology for the long term, rather than relying on cheap disposable goods. in the documentary film mechanical love (ambo, ), dr. shibata described paro as such to a woman who bought the robot for domestic use, ‘it was made with solid materials and will probably live for - years.’ in japan itself, about % of paros have been sold to domestic users, while the other % have gone to caregiving institutions and museums. purchases in other parts of the world are largely institutional, suggesting that different cultural models of consumption and of relating to robotic technologies might be at work. 	
   	
   the cultural and social grounding of paro’s design and use suggest an increasing awareness of the socially situated nature of robots and their effectiveness in everyday applications of robotics in japan. as an example of repeated assembly, paro’s design embodies cultural models of skill, quality, relational construction of value, and appreciation for local tradition in emerging robotic technology. these values are constructed with reference to new materials, such as paro’s antiseptic fur and silicon processors, novel processes of automated production, and new modes of personal interaction with technology. while the automated process of producing paro’s circuits enhances its quality, the hands-on human labor needed to assemble and personalize each unit also relate paro’s production to the unique human capabilities that define craft making. dr. shibata’s specialized expertise as a designer of interactive mechanical systems further extends the notion of craftsmanship from that of a hands- on process of creation to the ability to assemble globally distributed networks of human and non- human actors into a meaningful cultural artifact. users also play a crucial role in the successful implementation of paro, the design of which assumes that all the necessary functions are not included in the robot itself, but that ‘interaction will enlarge the number of functions.’ dr. shibata emphasized that people come to realize paro’s worth, despite its high price, through such locally constructed interactions. the robot’s interpretive flexibility allows people to relate to the robot in different ways depending on the cultural context; paro, in turn, is able to represent a local craft that draws on traditional values of production and consumption; a global product, constructed from parts developed all over the world, conforming to various national standards, and used on three continents; and a new category of ‘subject/object’ (suchman, ) – a research platform, a therapeutic tool, an honorary citizen, and a social actor with which people build personal relationships. paro’s cultural significance is therefore constructed 	
   	
   by a diverse network of actors, including roboticists, factory workers, machines, craftspeople, and users, all of whom contribute to new local and global robotics cultures through the repeated assembly of their daily practices, beliefs, and locally constructed meanings. performing robot culture in the spring of , i stood along with other visitors in the humanoid robot group’s lab at aist watching the hrp- robot swaying to the sound of the aizu bandaisan, a japanese folk dance (see figure ). the result of a collaborative project between scholars from aist and the university of tokyo and funded by japan science and technology agency’s core research for evolutional science and technology program (jst-crest), the performance demonstrated the use of robots to ‘preserve [traditional practices] forever,’ particularly in the event that there are no longer any human ‘inheritors’ that can carry them out (kudoh et al, : ). hrp- also played the kodo drum and performed the japanese martial art bojutsu during the aichi expo. along with protecting the country’s tangible and intangible cultural heritage as the foundation of japan’s ‘future cultural growth and development,’ (yamamoto, ), such projects linking culture, art, and new technologies are expected to give the public ‘a deeper understanding and awareness of science and technology’ and to improve their adoption and acceptance in society (government of japan, : - ). hrp- ’s folk dancing therefore not only embodies traditional practice in a new medium, but also seeks to make robots more acceptable to the public through their relationship with familiar cultural forms. the hrp- project as a whole and the folk dancing application more specifically involved negotiation between social and technological needs and existing cultural models to construct a robotic platform for use in everyday interactions. the roboticists i interviewed 	
   	
   showed a pragmatic interest in developing the culturally specific folk dancing application as a way to construct more advanced and robust technology. the humanoid robot group’s main aim is quite general: to create a platform for developers with an open architecture that will allow scientists to build various applications, or as one researcher working on the project said, ‘a computer with arms and a head’. the robot should be able to ‘go anywhere a normal human can go’; it ‘must be able to pass through a door, go up and down stairs, or crawl on the ground’. promotional photos show hrp- working in construction sites and other dangerous environments, as well as helping people carry heavy objects, serving tea, and washing dishes. current technological capabilities, however, do not allow humanoids to operate in such physically taxing and open-ended situations. roboticists see folk dancing as the ‘first step’ to solving the hardware and software challenges of a general purpose humanoid: ‘if we cannot make a robot for entertainment, we cannot make a robot for hazardous environments. so we can train our robots for five years, and then later come up with new applications.’ the development of hrp- as a generic humanoid platform that is adapted to different uses presupposes that the humanoid robot can be conceptualized and constructed separately from its specific behavioral and interactive capabilities, shifting the performance of robotics from robotics researchers to corporate clients and eventually to users. from the outset, the development of an application-oriented humanoid platform has been defined as a way to address societal issues (tanie, ), fitting aist’s policy of performing ‘full research’ from basic science to application in society (yoshikawa, ).	
   this was a departure from the largely technological focus of prior robotics research. the search for a viable application for the hrp- robot was also necessary for kawada industries, the researchers’ corporate partner, to continue working in robotics, and to the researchers, who needed an 	
   	
   advanced platform to ‘stay in the major league’ of humanoid science and development. the task of finding appropriate humanoid applications turned out to be more challenging than making the humanoid itself. the researchers spent two years making the platform and six years unsuccessfully testing out different commercial applications with industry partners; kawasaki heavy industry suggested ‘teleoperated humanoid driving machinery’ and hitachi developed a hospital patient care humanoid, but these ideas were not ‘interesting to customers in the future’. though unlikely to support a major market, the folk dancing application had some initial success when a ‘group of hotels offered to buy hrp- as a dancer. they are located in the countryside and there is no attraction there and they thought they could have more visitors if they have a robot show.’ although roboticists may see folk dancing as just a convenient application for technological development, this corporate buy-in to the image of the humanoid as cultural performer suggests that robots as artifacts adapted to japanese traditional practices have some popular acceptance. the researchers also needed to develop a robotic body that would be amenable to a variety of uses, for which they combined existing cultural models and technological capabilities. aist’s humanoid group had previously used honda humanoids, which were not open enough to allow them to pursue the software and hardware developments they desired. working with asimo, however, taught the roboticists that ‘how the robot looks’ was important for societal acceptance of the research. when they were developing their own humanoid platform, the hrp group decided to invite an anime artist, yutaka izubuchi, to design the robot. izubuchi was known for his work on patlabor, an anime series featuring robots performing municipal and industrial jobs similar to those envisioned for the hrp platform (see figure ). the hrp group had also considered the widely popular astroboy as a possible model for the new robot; astro’s 	
   	
   blueprints hang on the wall of one group member’s office marked with the title hrp-x (figure ). along with being technically inappropriate for kawada’s development process, however, the roboticists saw astroboy as having cultural connotations that were at odds with the aims of the hrp project: the project [funding] was supposed to terminate in march and [astroboy] was born in april. we were wondering whether to have the final demonstration on his birthday. but we found it too challenging… the shape is challenging, the round shape, the robot is very slim, so we would need more space to put in the parts. in the case of hrp- ’s design, the shape is supported by the external structure. using that method it is very difficult to develop an astroboy shape. and if we employ [the astroboy] design, the robot should be exactly like this, because many people have an image in their mind. but with patlabor, it was a japanese design, but it is still a new robot… another problem with a robot like astroboy is that we cannot make him work, since he is just a boy. we were afraid that people would complain that we cannot let a boy work. that was seriously a problem. but the main reason was technology. because kawada has experience in developing the type of structure which is supported by the exoskeleton, but the other type of robot is very different. the roboticists’ vision of how to accomplish their technical goals explicitly included expectations about the likely social and cultural interpretations of robots outside of the laboratory, while material and technical possibilities posed limitations to certain cultural figurations. the final choice came down to a preference for what the roboticists saw as the combined technical and social realism of izubuchi’s robots: ‘from the viewpoint of mechanical engineering astroboy is not interesting, it’s not 	
   	
   realistic… on the other hand, with izubuchi-san our feeling is that he knows much about technology and has a vision of future machines… patlabor… is a quite realistic world where humanoid robots are used in society.’ this notion of realism is defined by roboticists’ extensive technical knowledge and the kind of social practices they saw as compatible with technologically feasible robot designs. modeling hrp- on patlabor therefore materialized not only what the researchers thought would be a technically workable robot, but also what they understood to be appropriate social roles for robots and interactions between people and robotic technology. figure . hrp- dancing the aizu bandaisan and the cover of a patlabor comic. (photo credit: http://news.nationalgeographic.com/news/ / / -dancing-robot.html) 	
   	
   figure . blueprints for astroboy as hrp-x, a possible template for the hrp platform. the ongoing negotiation between technical possibilities and cultural models that resulted in the hrp- design shows that, to cross the boundary from fiction to reality, cultural traditions and notions about robotics need not only be popular, but also technically compelling and feasible. as a result, the aizu bandaisan may persist in its robotic embodiment while activities less amenable to computational reduction are lost to posterity, and astroboy may eventually be forgotten while patlabor-style robots become ubiquitous. cultural needs also motivated roboticists to push the limits of technical capabilities. while folk dancing was easily amenable to computation and software development, the researchers admitted that dancing was ‘too much’ for hrp- ’s hardware – ‘the speed of the motion is too high. it destroys the robot… then when we try [to do] some experiments, it falls down.’ pushing hrp- to the point of breakdown displays the tension roboticists experience between the need to provide a socially and culturally acceptable application for robotic technologies and the constraints posed by technological 	
   	
   capabilities. as a cultural performance, hrp- ’s aizu bandaisan dancing presents a tension between notions of culture as the rote repetition of a computationally defined set of behaviors and as a finished product to be viewed, and the idea that cultural traditions are co-constructed with the audience as they are performed. repeated assembly suggests that the continuation of culture requires it to always be transformed and adapted in the process of transmission. while hrp- materializes to the public the roboticists’ interpretation of culture and robotic technology’s place in it, it does not provide an opportunity for the two-way communication between performer and the audience through which such traditions gain a cultural meaning that shifts with their circumstances. as well as bringing up issues regarding the lack of public participation in the construction of new technological and cultural forms, this way of reproducing traditional performance poses questions about the relational authenticity of cultural experience being simulated through mechanized means. according to sherry turkle, the automation and mechanization of interpersonal relationships reduces human values to appearance, as people are ready to accept a machine’s simulation of emotional and personal understanding as sufficient for establishing a relationship. she claims this creates a ‘crisis in authenticity’ (turkle, : - , ) and questions the value of ‘interactions that contain no understanding of us and that contribute nothing to a shared store of human meaning’ (p. ). hrp- ’s rote reproduction of tradition may similarly be interpreted as, perhaps unwittingly, replacing the ongoing construction of cultural meanings and practices by people with the mere semblance of cultural knowledge and competence performed by machines. engineering cultural subjects 	
   	
   when the dancer whose movements were computationally analyzed to produce hrp- ’s dance moves saw the robot doing the aizu bandaisan, she reported ‘she could “feel” her style in the dancing of the robot.’ hrp- project members claim they did not consciously aim to portray a specific personal style in their robot’s performance. waseda university researchers working in the field of ‘kansei robotics,’ however, work on deliberately including such subjective elements into robotic programming. researchers in kansei robotics claim that human-robot communication requires the machine to engage the world with sensitivity, sensibility, feeling, aesthetics, emotion, affection, and intuition (hashimoto, ). shuji hashimoto, a member of waseda’s humanoid robotics institute, proposes kansei robotics as a new paradigm in robot design defined by ‘sensitive data processing… [that is] not about dealing with signals any more but about laying down our feelings on data processing's cutting board. as opposed to… data processing types which [sic] were looking for an objective reality, sensitive data processing aims for subjectivity’ ( : ). kansei roboticists contrast their approach to more rational and logical definitions of intelligence that have so far dominated robotics research. in order to achieve kansei feelings and make subjective sense of their environment, waseda university roboticists describe their robots as including an internal ‘kokoro function’, named after the organ that generates kansei. kokoro – which can be translated as heart, spirit, or mind and is posited as a foundational aspect of humanity in japan (katsuno, ) – defines subjective values and interpretations as necessary to robot intelligence. a waseda university professor compares applying kansei to robotics with prior approaches to enabling a robot’s actions in the world: there is a typical subject of robotics field, obstacle avoidance…. i want to study why the robot avoids the obstacle. conventional researchers just look at how to 	
   	
   avoid the object…. [i believe] the motion should be determined by the sense of values or the meaning of the environment, [which will] be calculated from the experience of the robot… based on the kokoro function…. defining the subjective properties of action and experience computationally poses challenges to customary methods for programming robots, as exemplified by waseda roboticists’ work to design a violinist robot, exploring the notion of kansei as ‘the relationship between playing expression and the music and individual sense of value’. in designing the robot, researchers first tried to develop kansei by analyzing the physical properties of a human player’s movements, such as force and velocity, along with the properties of the musical score and sound, but ‘found it impossible to translate subjective experience into an objective measure’. they felt they were able to model what it means to ‘play with feeling’ only once they included in their analysis listeners’ comments on the violinist’s performance along with the motion data. this defined appropriate movements for kansei expression, thereby using subjective human impressions as a resource for the robot’s subjectivity. the researchers also strive to enable the robots to develop ‘evaluative criteria and their own emerging function’ for behavior through interactions with their environment (sugano, : ). one example is a robot that develops variable responses to people depending on its experiences with them; it can be attentive to the requests of a person who maintains the robot regularly and disregard those of a stranger, who is ‘meaningless’ to the robot. or, a robot could learn to respond differently to a battery that it can use to charge itself (compared with what cake might mean to a person), or to a piece of metal, which can cause the robot to discharge (described as rotten meat in human terms) (sugano, : ). in these examples, the robot’s behaviors are relationally defined through its experiences. similarly, using human evaluations to develop the robot’s ability to play music ‘with feeling’ suggests that kansei 	
   	
   is a property of the relation between the robot’s action and people’s perceptions, rather than a characteristic of the robot itself. robertson ( ) refers to this relational approach to robot design as ‘active incompleteness’, and suggests it is a unique characteristic of robots built in japan, inspired by a culturally specific view of the self as relationally defined (pp. - ). this relational conception of robotic intelligence contrasts with ‘autonomous, rational agency’, which suchman ( ) suggests is ‘the prevailing figuration of euro-american imaginaries’ (p. ). robotics researchers themselves claim that the definition of intelligence as rationality is a western conception, and that the japanese understanding of mind is more holistic – the reference to broadly defined ‘western’ values is made by the robotics researchers i interviewed, who compare japanese culture with a homogeneously defined western culture. a waseda university roboticist describes the difficulty of presenting kokoro to foreign colleagues: there is almost the same term in english – mind, feeling – but it is difficult to think that kokoro and mind are the same word. it is difficult because we consider that kokoro is the integration of emotion, intelligence, and intention. so it is also the origin of the intelligence and emotion, all the behavior of human… [in english], when someone is behaving irrationally, foolishly, people can say they are ‘out of their mind’. but in japan we define such crazy behavior as also resulting from the kokoro function. there is no way we can say ‘out of kokoro’. designed to embody kokoro and a culturally specific understanding of cognition, kansei robots as ‘model (in)organisms’ (suchman, : - ) represent ideas about uniquely japanese cognitive processes. a waseda university professor describes a conversation about kokoro in the following way: 	
   	
   at the plenary session of an ai conference i attended, i presented about the wamoeba project and the kokoro function… after i finished speaking… some guy from europe asked us – no, he told us – we were wrong. we should not consider mind as kokoro, emotion… it is a very difficult topic… in japan, we have a strong animism idea... so we can consider that mind can be in artificial things or in natural things, in stones, trees. many people in europe and america cannot think about that. but in korea and china and japan it is easy for us to consider that. it is a big difference, just from the culture. the emphasis on culturally specific concepts of consciousness and agency as the foundation for robotics serves to define a regional scientific community of east asian robotics designers and users conceptually distinct from ‘the rest’. this kind of differentiation may be important for legitimizing scientific approaches developed outside the traditional centers of scientific production in europe and the us, even in the case of japan, a leader in robotics development and research. it is notable that these culturally specific formulations of robotic affect do not reference emotional robots in the us and europe, which similarly purport to overturn dominant ideas about machine intelligence by incorporating affect into computation (for a critique, see suchman, : - ). cynthia breazeal’s ( ) kismet, for example, displays emotion and uses emotional drives to govern its own behavior and modulate people’s interactions with it. through this omission, the cultural framing of robots reinforces cultural boundaries between scientists in different geographies, further enabling roboticists to create a national context and a potential market for robotics in japan and other east asian countries. waseda university professor takanishi atsuo goes further in ascribing the acceptance of robots in japan to the culturally unique cognitive abilities of the population, involving 	
   	
   differences in the perception of sounds and reactions to objects between japanese and western populations. takanishi suggests that these cognitive abilities, coupled with the rich onomatopoeic expressions in the japanese language, allow japanese people to develop relationships with objects, which can be extended to robots: japanese treat anything in the universe as if it has a soul inside, which may have strong relations to the fact that japanese use the left brain for natural sound recognition and have a large vocabulary of onomatopeias. we cannot treat robots and other artifacts less worthily (rudely/roughly/impolitely) or even too-worthily (too-goodly/too-muchly) because we are no more than they are and even some of them become a god… [this] makes the society to be highly ecological and highly friendly to anything, including artificial ones. robotics researchers refer to animistic beliefs and practices to suggest that japanese people are particularly susceptible to interpreting robots as companions and to legitimize the creation of robots that perpetuate an anthropomorphic view of technology. as roboticists seek to construct human cognition by developing kansei and kokoro in robots, the psychology of the normative japanese subject is interpreted and redefined through the designs and prescribed uses of robots. in critique of this culturally essentialist perspective, wagner ( ) suggests that techno- animism is a much more globally present phenomenon and that people outside of japan also interpret and interact with advanced technologies in human-like ways. viewing robots through the lens of buddhist or shinto belief and designing them to have subjective experiences of the world opens up the possibility for imagining a new ontological category represented by robots in society. wabotto no hon, a book series written by roboticists from waseda university to introduce humanoids and their research to the public, refers to robots 	
   	
   as ‘a third existence… between that of a living creature and that of a nonliving creature’, ‘machines with hearts’ that are ‘no longer pure and simple machines’ (hashimoto and yabuno, : ; see figure ), while ‘human-shaped robots are considered as having a life similar to that of human beings’ (toshio ojima in miwa and yabuno, : ). the ability to evaluate the world subjectively allows robots to be more than tools; they can be ‘machines that almost have a life’ and can ‘attain enlightenment’ (hashimoto, : ). in the s, japanese robotics pioneer masahiro mori similarly stated that ‘robots have the buddha-nature in them’ (mori, : ). figure . depictions of wabot as a ‘third existence’ in wabotto no hon volume (hashimoto and yabuno, ) and volume (sugano and yabuno, ). the notion of a third existence suggests that robots can coexist as social agents alongside humans, though not necessarily as their social equals. roboticist takahashi tomotaka, speaking at the japanese cultural center in new york city, explained that robots are similar to ‘live-in 	
   	
   exchange students’ and like them need time to learn how to take part in japanese culture: when we accept an exchange student a lot of trouble occurs… from the difference of culture. a robot is just like that – it can’t do what we can do, but it can do what we can’t do… but it’s still family and there is an emotional feeling, and then the robot becomes better and better and they do a lot more work. they can handle much more things and our lifestyles will change. this quote anthropomorphizes robots not as japanese subjects, but as bumbling, disruptive foreigners, who can become useful to society only once they can emulate local customs. robots are often depicted as being preferable to immigrant workers, who might have more trouble assimilating to the local culture: people’s age is going up little by little, so workers are decreasing. we have to get some workers somehow. in the us, people come from other countries, but in japan it is very difficult. in us there are many different cultures, many nationalities, but in japan it is almost just one nationality so it is difficult to bring in people from other nationalities, it makes people nervous. in japan the robot system is successful, one reason is the problem of nationality. where cultural difference and change is described as a major threat to the wellbeing of japanese society, culturally trained robots are presented as a possible solution to this social challenge and a way to conserve japan’s assumed cultural homogeneity. robotics therefore becomes part of a conservative social agenda (see also robertson, ). robots as a third existence are also expected to provide social connection in an increasingly individualized world. katsuno ( ) suggests that the attribution of kokoro to humanoid robots in japan by robot designers and users alike is a response to the social alienation 	
   	
   people feel in postmodern society. the wabot books similarly represent robots as social mediators for humans; wabot is described as a ‘director of hearts’ and a ‘bridge of the heart and the heart’ (miwa and yabuno, : ). other researchers have suggested that anthropomorphic robots can provide a ‘human presence’ in future society. turkle has criticized the vision of robots as relational artifacts by pointing out that social interaction with machines may leave people even more socially isolated (pp. - ), a concern echoed by other scholars analyzing the use of robotics in caregiving applications with elders and children (e.g. sharkey & sharkey, , ; sparrow & sparrow, ;). as we have seen in the discussion of kansei robots above, such robots also embody normative visions of culturally appropriate behavior towards people and technologies. focus on robotics design as a process of cultural repeated assembly therefore calls for reflection on how the cultural models embodied by and embedded in robots affect people’s evolving sense of their relational and cultural selves. assembling robot cultures robotics in japan has become identified with a vision of robots as social agents and personal technologies that will be easily accepted by society. in the development of this vision, scientists incorporate and adapt traditional themes and cultural values into advancements in robotic technology to suggest cultural continuity and support technological development. the examples of paro, hrp- , and kansei robotics present robots as cultural products, performers, and subjects, and show how robotics researchers use their cultural standpoint to provide epistemological grounding and social justification for robotics. novel technological capabilities and relationships between humans and non-humans are defined in relation to familiar social roles, interaction patterns, and cognitive models, which are in turn redefined to include new 	
   	
   technological artifacts and the interactions they enable. such repeated assemblies of cultural models and technology play a variety of functions: justifying specific design choices for consumer-oriented robots, including presumed societal interests in researchers’ technical agendas, situating robotics and their social consequences within a narrative of cultural continuity, modeling appropriate attitudes toward robotics technology, and defining the uniqueness of japanese robotics in the international scientific community and national and global markets. the definition of emerging robotic technologies as continuations of existing cultural models and invented traditions can be seen as a ‘modern trope’ constructed in response to social and cultural change (vlastos, : ) and used to provide a sense of security in a society going through ‘constant change and innovation’ (hobsbawm, : ). tradition was invoked in depictions of robots as an alternative to immigrant workers as a solution to japan’s labor shortage, in comparisons between paro and traditional crafts, in the use of hrp- to preserve cultural practices in danger of being lost due to lack of human interest, and perhaps in the construction of normative practices and cognitive models for japanese subjects to position japanese robotics within global science. the articulation of robotics as the continuation of japanese culture, therefore, seeks not only to normalize new technologies as they enter into daily life and to reinterpret culture in ways that support their use and further development, but also to contend with the continuing changes in culture itself. science and technology scholars know that scientists are always historically, geographically, culturally, and socially located; japanese roboticists, however, use their cultural positioning to establish the social and scientific significance of their work in a striking departure from the dominant culture-neutral language of science. in this way, japanese roboticists question the necessity of supplanting local traditions with ‘universal’ values for the sake of progress 	
   	
   (brown, ; feenberg, ; fujimura, ). feenberg ( : ) suggests that japan’s framing of technological development as a cultural issue creates an ‘alternative modernity’ that includes values as fundamental components of all scientific and technological production. such alternative imaginaries of modern society are seen in the aichi expo’s claim that conservation should replace mass production and consumption, the focus of kansei robotics on subjective rather than objective experience, and the expectation that paro’s users will recognize and value the artifact’s quality and craft-like uniqueness. as recognized world leaders in robotics, japanese roboticists’ culturally situated approach to the development of science and technology raises awareness of science and technology as socially negotiated ‘local knowledge systems’ (harding, ) within the broader robotics community. the use of cultural models as frameworks for new robotic technologies suggests a rising understanding among robotics researchers that technologies need to fit into and be supported by appropriate cultural and social structures. the cultural view of science and technology proposed by japanese researchers, however, falls short of providing a culturally reflexive understanding of robotics and the social values that are repeatedly assembled in robotics projects. studies have noted the opportunity for robotics research to create new possibilities for redefining the boundaries and relationships between and among humans and machines (e.g. castaneda, ; suchman, ; turkle, , ); researchers have also pointed out that the actual practices of robotics often serve to re-entrench existing social stereotypes and hierarchies rather than to contest them (e.g. robertson, , ; suchman, ). the cases analyzed in this paper present a similar dynamic, in which new robotic platforms and social visions of robots in society are related to roboticists’ assumptions about cultural values and practices, without critical reflection on their broader meaning or desirability for other social actors. the comparison between paro and traditional craft making 	
   	
   readily replaces handmade crafts with industrial production and transfers local consumption practices to a global market; the use of hrp- to conserve the cultural practice of folk dancing suggests a static notion of culture; and the use of culturally specific conceptualizations of cognition as a basis for robot design in kansei robotics defines normative japanese and robotic subjects assuming the existence of a homogeneous cultural heritage. such notions of culturally unique technology can lead to re-entrenchment of specific social values, creating robots as ‘retro- tech’ (robertson, , p. ) that uses the veneer of technological novelty to obscure conservative social policies. cultural definitions of science and technology are also prone to essentialism, stereotyping, and exclusion reinforced by technological means. the associations between robotics and japanese culture have led to perceptions of japanese people as robotic (for a critique, see fujimura, ), as well as to a techno-orientalism (morley and robinson, ) in which japan is seen as the harbinger of technological development while continuing in its role as ‘other’ to western society. scientists themselves are caught up in reproducing cultural stereotypes, such as notions of japan’s cultural homogeneity, assumptions that shinto beliefs will make the public accepting of robots, and patriarchal representations of gender roles in the design of humanoids (robertson, ). robotics has been criticized as a field that provides ‘technological fixes’ for social problems (e.g. robertson, ) and the examples discussed in this paper show that merely introducing the notion of culture into robotics discourse and practice does not resolve this issue. while robotics researchers in japan have brought attention to culture as part of technological development, their framing of culture in robotics largely relies on untested and unquestioned cultural assumptions, as robots have yet to be broadly commercialized and adopted by users in ways that will allow them to contribute to their cultural meanings. a more critical view of the 	
   	
   development of ‘robotics culture’ as a process of repeated assembly suggests that future research in and on robotics will need to engage explicitly in ‘cultural fixes’ (layne, ) – revealing and questioning common assumptions, exploring alternative meanings situated within particular cultural contexts, and reflecting on changes in cultural meanings – to identify and resolve contemporary sociotechnical problems and develop socially beneficial and meaningful applications for robotic technologies. acknowledgements i would like to thank lucy suchman, shibata takanori, matthew francisco, linnda caporael, the anonymous reviewers, and my interviewees and other ethnographic study participants for their contributions to this paper. funding this work was supported by nsf grants #	
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   as part of their work, scientists in many different fields create ‘technoscientific imaginaries’ that describe the relationship between society and technology and the resulting social order and common norms, beliefs, and desires (fujimura, ; suchman, ). imaginaries can motivate knowledge production and giving legitimacy and meaning to the results of research (taylor, ). in developing new knowledge and technologies, researchers reproduce cultural 	
   	
   	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
   assumptions about social roles and interactions and reiterate common cultural, social and, political tropes (e.g. forsythe, ; edwards, ). robotics researchers produce not only technological artifacts, but ‘visions of future possibilities’ in society that provide shared goals and narratives for developing ‘national and transnational identities, notions of culture, new institutions, and future realities’ (fujimura, ). aichi expo website, http://www.expo .or.jp/en/robot/index.html (accessed september ) sherry turkle ( ) posits the development of a ‘nascent robotics culture’ shaped by ‘the possibility if not the reality of robots in the form of relational artifacts’ (p. ) and prompting a reimagining of humans and their relationships to technology. other scholars have discussed popular discourse about robots (ito, ) and new institutional visions of society including robots (e.g. robertson, ) as important components of developing robotics science and technology in society. references to ‘robotics culture’ in this paper refer to the co-constitution of robots and humans at the levels of philosophical concepts, personal experience, organizational practice, and institutionalized discourse, including and going beyond turkle’s conceptualization. aichi expo website, http://www.expo .or.jp/en/whatexpo/theme.html aichi expo website, http://www.expo .or.jp/en/venue/jz_b.html ministry of foreign affairs of japan’s statement on aichi expo , http://www.mofa.go.jp/j_info/expo /j-message.html in , the national museum of nature and science in tokyo organized an exhibition titled ‘the great robot exhibition: karakuri, anime and the latest robots’, relating history and contemporary culture to advanced robotics research. japanese multinational corporations have similarly invoked history when presenting robots to the public: mitsubishi's flagship robot wakamaru was named after ushiwakamaru, a famous th century general, and resembles a samurai in formal wear (hakama) (robertson, ), while dr. tomotaka takahashi’s murasaki shikibu robot is named after and inspired by the author of the tale of genji, a japanese classic and one of the world’s first novels. 	
  epstein ( ) identifies a variety of approaches to the study of culture and technoscience in sts literature: the analysis of science as a cultural practice (e.g. knorr-cetina, ; pickering, ); a focus on the cultural significance and meaning of science in a broader sense (e.g. harding, ;); investigations into the relationship between science and broader ‘culture’ (e.g. bowker and star, ; fujimura, ); and studies of different science ‘cultures’ (e.g., gieryn, ; haraway, ; traweek, ). sts scholars have also shown that technology can ‘embody a culture or a set of social relations’ (wajcman : ) and that the cultural and historical resources in our social environment shape our ways of viewing and imagining the world (suchman ) and designing for it (Šabanović, c). lucy suchman ( ) suggests robots can be seen as ‘model (in)organisms’ in the development of artificial intelligence and the study of human cognition, which allows us to use the study of the design and development of these robots to explore how the relationships between humans and non-humans are being reconfigured (pp. - ). alač’s ( , ) work displays how robots and their perceived agency and sociality are created through interaction with a larger social context; she shows how the embodied actions of the robot and researchers are dynamically co-constructed through the process of developing human-like capabilities for robots ( ). castaneda ( ) suggests that robotic artifacts designed to experience touch breach ‘the human/non-human divide’ and create possibilities for a feminist reimagining of human-machine 	
   	
   	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
   relationships and embodiment. personal communication with dr. takanori shibata, june . this origin story makes no reference to the multiple sites in which paro’s development has taken place since the project’s start in , which include aist in tsukuba, where dr. shibata is a senior researcher, as well as mit and the university of zurich, where he was a visiting scholar, and the many field sites in which paro has been tested and evaluated. we can infer that the location of the paro factory, or of the cultural sources of dr. shibata’s inspiration for paro’s design as described in this manuscript, are seen as defining the robot’s origins. the social situatedness of robots is widely discussed by social science scholars studying robotics (e.g. alač, , ; kidd and turkle; Šabanović, a, b). dr. shibata and his longtime collaborator dr. kazuyoshi wada have developed initial guidelines that people can use to scaffold the robot’s sociality to ensure its therapeutic effect by analyzing their experiences observing paro used in various healthcare contexts (wada, ). dr. shibata, speaking at japan society in new york, ny, june . in contrast to the robotic researchers portrayed here, suchman ( ) problematizes the notion of a robotic subject by analyzing how the ‘sameness and difference’ of humans and machines (p. ) are materialized through various contemporary robotic projects, including kismet, mertz, and robota. she points out that one of the dangers of the co-definition of humans and machines is that existing conceptions of ‘model humans’ and instrumental machines will be unreflexively reproduced without broadening the space of possibilities for both humans and robots.	
  	
   interview with robotics researcher from aist humanoid robot group, may . interview with robotics researcher from aist humanoid robot group, april . interview with robotics researcher from aist humanoid robot group, may . personal communication with lucy suchman, july . interview with robotics researcher from tokyo metropolitan university, april . interview with robotics researcher from aist humanoid robot group, may . interview with robotics researcher from tokyo metropolitan university, april . interview with robotics researcher from aist humanoid robot group, may . interview with robotics researcher from aist humanoid robot group, april . astroboy is often discussed by roboticists, and scholars studying robotics as a symbol of the friendly image of robotics in japan (e.g. ito, ; robertson, ; wagner, ), and the japanese government has widely used its image to broaden public support for the development of robotic technologies (ito, ). interview with robotics researcher from aist humanoid robot group, may . interview with robotics researcher from aist humanoid robot group, april . interview with robotics researcher from aist humanoid robot group, may . interview with robotics researcher from aist humanoid robot group, april . kansei is a japanese concept that has been difficult to define concretely. harada ( ) found that researchers refer to the term in a variety of ways, as ‘a subjective and unexplainable function’, ‘the cognitive expression of acquired knowledge and experience’, ‘the interaction of intuition and intelligent activity’, and ‘the ability of reacting and evaluating external features intuitively’. lee et al ( ) describes it as a cognitive function that inspires creativity through images that result in affective responses, in contrast to chisei, which creates knowledge and understanding through verbal descriptions and logical facts. interview with robotics researcher from waseda university, april . 	
   	
   	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
   interview with robotics researcher from waseda university, april . interview with robotics researcher from waseda university, april . interview with robotics researcher from waseda university, april . the wamoeba project (short for waseda artificial mind on emotional base), started in the mid- to late- s and continuing until , includes a series of robots designed to develop emotions using an internal control system modeled on humans to adjust to their embodied experience and sensing of the environment and which were evaluated in interactions with humans (e.g. ogata & sugano, , ). interview with robotics researcher from waseda university, april . in a talk given at the roboethics workshop held in rome during icra , takanishi cited controversial research by tadanobu tsunoda ( ) that purports to show that japanese research subjects show activity in the left – ‘linguistic’, logical and intellectual – side of their brain when listening to nature sounds, in comparison to western subjects who respond with the right side of their brain as they would to mechanical sounds, noise, and music. tsunoda relates his results to the animistic interpretation of nature in japanese culture. slides from takanishi atsuo’s talk at icra are available at www.roboethics.org/icra /contributions/.../takanishi_icra _ppt.pdf (downloaded on july ). 	
  kokoro is not the only way in which robots are designed to reproduce japanese cultural values; the design of the gynoid android’s face as a composite of female japanese physiognomies provides ‘a topographical map of national ethnic identity’ (robertson, ). interview with robotics researcher at aist, may . the interviewee had participated in the development of a meti plan on future growth of robotics. interview with a robotics researcher at osaka university, may . aichi expo website, http://www.expo .or.jp/en/whatexpo/theme.html references alač m, movellan j and tanaka f ( ) when a robot is social: enacting a social robot through spatial arrangements and multimodal semiotic engagement in robotics practice. social studies of science ( ): - . alač m ( ) moving android: on social robots and body-in-interaction. social studies of science ( ): - . ambo p (director) ( ). mechanical love [documentary]. denmark. bartneck, c, nomura t, kanda t, suzuki t and kensuke, k ( ). cultural differences in attitudes towards robots. proceedings of the aisb convention. bowker gc and star sl ( ) sorting things out: classification and its consequences. cambridge, ma: mit press. breazeal c ( ). designing sociable robots. cambridge, ma: mit press. 	
   	
   	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
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   wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ untitled i n fec ti on c o nt rol a n d h o spi ta l e p idem i olo gy a u gus t , v ol . , n o . s c y s t i c fi b r o s i s f o u n d a t i o n g u i d e l i n e infection prevention and control guideline for cystic fibrosis: update lisa saiman, md, mph; ,a jane d. siegel, md; ,a john j. lipuma, md; ,a rebekah f. brown, md; elizabeth a. bryson, rn, msn, ppcn-bc, cs; mary jo chambers, lcsw, msw; veronica s. downer, rn; jill fliege, aprn; leslie a. hazle, ms, rn, cpn, cphq; manu jain, md, ms; bruce c. marshall, md, mmm; catherine o’malley, rrt-nps, as; suzanne r. pattee, jd; gail potter-bynoe, bs; siobhan reid; karen a. robinson, phd; kathryn a. sabadosa, mph; h. joel schmidt, md; elizabeth tullis, md, frcpc; jennifer webber; david j. weber, md, mph ,b affiliations: . department of pediatrics, columbia university medical center, new york, new york; and department of infection prevention and control, newyork-presbyterian hospital, new york, new york; . department of pediatrics, university of texas southwestern medical center, dallas, texas; and children’s medical center, dallas, texas; . department of pediatrics and communicable diseases, university of michigan medical school, ann arbor, michigan; and department of epidemiology, university of michigan school of public health, ann arbor, michigan; . department of pediatrics, vanderbilt university medical center, nashville, tennessee; . department of pediatrics, akron children’s hospital, akron, ohio; . department of social work, arkansas children’s hospital, little rock, arkansas; . university of michigan hospital, ann arbor, michigan; . pulmonary division, nebraska medical center, omaha, nebraska; . current affiliation: director, clinical operations and performance improvement, spectrum health medical group, grand rapids, michigan; . department of medicine, feinberg school of medicine, northwestern university, chicago, illinois; . medical department, cystic fibrosis foundation, bethesda, maryland; . de- partment of pediatrics, ann and robert h. lurie children’s hospital of chicago, chicago, illinois; . adult with cystic fibrosis, silver spring, maryland; . department of infection prevention and control, boston children’s hospital, boston, massachusetts; . parent; . johns hopkins university, baltimore, maryland; . dartmouth institute for health policy and clinical practice, geisel school of medicine at dartmouth, lebanon, new hampshire; . department of pediatrics, children’s hospital of richmond at virginia commonwealth university, richmond, virginia; . department of medicine, university of toronto, and keenan research centre of li ka shing knowledge institute, st. michael’s hospital, toronto, canada; . parent; . departments of medicine and pediatrics, university of north carolina at chapel hill medical school, chapel hill, north carolina; a. co-chairs of the infection prevention and control guideline for cystic fibrosis committee; b. the list of authors represents the entire infection prevention and control guideline for cystic fibrosis committee. received march , ; accepted march , ; electronically published july , . infect control hosp epidemiol ; (s ):s -s � by the society for healthcare epidemiology of america and the cystic fibrosis foundation. all rights reserved. - x/ / s - $ . . doi: . / t a b l e o f c o n t e n t s executive summary introduction methods for document development committee structure systematic review process results of the systematic review process for inclusion of recommendations external review updated recommendations for ip&c in cf i. core recommendations ii. recommendations for microbiology and molecular epi- demiology iii. recommendations for cf clinics and other ambula- tory care settings iv. recommendations for inpatient settings v. recommendations for nonhealthcare settings vi. recommendations for healthcare personnel with cf vii. recommendations for psychosocial and medical impact of ip&c background information supporting the recommendations i. cf microbiology and molecular typing i.a. general microbiology methods i.b. molecular typing methodologies i.c. epidemiology of cf pathogens i.c. . overview i.c. . burkholderia spp. i.c. . other gram-negative species i.c. . small colony variant (scv) s. aureus i.c. . nontuberculous mycobacteria i.c. . aspergillus spp. i.d. surveillance strategies for cf pathogens ii. routes of transmission of cf pathogens ii.a. contact and droplet transmission ii.b. classic view of droplet transmission ii.c. emerging view of droplet transmission ii.d. potential role of droplet nuclei ii.e. paradigm for transmission of respiratory pathogens downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nfe cti o n c ont ro l a n d h o sp ita l e p idem i olo gy a u gus t , v o l. , n o . s iii. potential sources of cf pathogens iii.a. person-to-person transmission among people with cf iii.a. . burkholderia spp. iii.a. . p. aeruginosa iii.a. . other gram-negative bacteria iii.a. . s. aureus iii.a. . nontuberculous mycobacteria iii.b. acquisition from people without cf iii.b. . p. aeruginosa and burkholderia spp. iii.b. . s. aureus iii.b. . respiratory viruses iii.c. acquisition from animals iii.d. acquisition from the inanimate environment iii.d. . nonhealthcare sources: soil, organic matter, and water iii.d. . healthcare sources: water, surfaces, equipment, air, and contaminated products iii.d. . construction and renovation iv. strategies to reduce transmission and acquisition of cf pathogens iv.a. overview iv.b. education strategies iv.c. hand hygiene iv.d. personal protective equipment (ppe) iv.d. . gowns and gloves iv.d. . masks, eye protection, and respirators iv.e. environmental cleaning and disinfection iv.e. . overview iv.e. . healthcare facilities: respiratory therapy, neb- ulizers, and diagnostic equipment iv.e. . nonhealthcare settings: nebulizers iv.f. strategies for cf clinics iv.f. . cohort segregation versus all-patient separation iv.f. . cf clinic logistics iv.f. . hand hygiene iv.f. . mask use by people with cf iv.f. . gown and glove use by healthcare personnel iv.f. . pulmonary function testing iv.f. . environmental practices iv.f. . use of restrooms iv.g. hospital room placement and transmission-based precautions iv.h. construction and renovation iv.i. nonhealthcare settings iv.i. . camps and educational retreats iv.i. . indoor events iv.i. . outdoor events iv.i. . schools iv.i. . prevention of viral transmission and immuniza- tions v. healthcare personnel with cf vi. psychosocial and medical impact of transmission-based isolation precautions vii. challenges to implementation of ip&c recommendations research agenda references tables table . infection prevention and control guidelines pub- lished since table . population, intervention, comparison, and out- come (pico) clinical questions developed for the guideline for infection prevention and control in cystic fibrosis (cf): update table . grading systems used in the updated infection pre- vention and control (ip&c) guidelines for cystic fibrosis (cf), table . burkholderia cepacia complex table . modes of transmission of potential pathogens in cystic fibrosis table . relative frequency of shared strains of different cystic fibrosis pathogens table . examples of opportunities for hand hygiene by healthcare personnel, people with cystic fibrosis (cf), and families table . use of personal protective equipment by healthcare personnel, people with cystic fibrosis (cf), and families table . strategies to enhance the effectiveness of environ- mental cleaning in ambulatory and inpatient set- tings for people with cystic fibrosis (cf) table . infection prevention and control strategies for cystic fibrosis (cf) clinics to minimize the risk of transmission of potential pathogens within feet ( meters) table . possible strategies to minimize the adverse psy- chosocial impact of isolation precautions among people with cystic fibrosis (cf) table . knowledge, attitudes, and practice barriers related to implementing the infection prevention and control guideline in cystic fibrosis (cf) table . strategies to enhance implementation of the in- fection prevention and control guideline among healthcare personnel, people with cystic fibrosis (cf), and families of people with cf figures figure . age-specific prevalences of respiratory organisms, figure . respiratory organism prevalences, – e x e c u t i v e s u m m a ry introduction the infection prevention and control (ip&c) guideline for cystic fibrosis (cf) was commissioned by the cf foun- dation as an update of the infection control guideline for cf. during the past decade, new knowledge and new downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s challenges provided the following rationale to develop up- dated ip&c strategies for this unique population: . the need to integrate relevant recommendations from evidence-based guidelines published since into ip&c practices for cf. these included guidelines from the centers for disease control and prevention (cdc)/healthcare infec- tion control practices advisory committee (hicpac), the world health organization (who), and key professional so- cieties, including the infectious diseases society of america (idsa) and the society for healthcare epidemiology of amer- ica (shea). during the past decade, new evidence has led to a renewed emphasis on source containment of potential path- ogens and the role played by the contaminated healthcare en- vironment in the transmission of infectious agents. further- more, an increased understanding of the importance of the application of implementation science, monitoring adherence, and feedback principles has been shown to increase the effec- tiveness of ip&c guideline recommendations. . experience with emerging pathogens in the non-cf pop- ulation has expanded our understanding of droplet trans- mission of respiratory pathogens and can inform ip&c strat- egies for cf. these pathogens include severe acute respiratory syndrome coronavirus and the influenza a h n . les- sons learned about preventing transmission of methicillin- resistant staphylococcus aureus (mrsa) and multidrug-resis- tant gram-negative pathogens in non-cf patient populations also can inform ip&c strategies for cf. . as the use of molecular technologies increased through- out the past decade, there is an improved understanding of the epidemiology of newer cf pathogens that are increasing in prevalence and are associated with increased morbidity and mortality. such pathogens include mrsa, mycobacte- rium abscessus, new species in the burkholderia cepacia com- plex (eg, burkholderia dolosa), and epidemic clones of pseu- domonas aeruginosa (eg, the liverpool epidemic strain). methods for document development an interdisciplinary committee of healthcare personnel with expertise in cf, parents of children with cf, and an adult with cf determined the scope of the guideline, reviewed the evidence (including that from a systematic review), and de- veloped and voted anonymously on specific recommenda- tions. whenever appropriate, this guideline has integrated relevant recommendations from the infection control guideline for cf and from other existing ip&c guidelines. the focus of the updated guideline is to provide recom- mendations to prevent individuals with cf from transmitting and/or acquiring respiratory tract pathogens from others with cf in ambulatory care and inpatient settings. recommen- dations for nonhealthcare settings represent efforts to respond to questions and concerns voiced by people with cf and their caregivers and, thus, are intended to educate the cf com- munity about potential risks and to help people with cf and their families and friends make informed choices in their personal lives. recommendations for nonhealthcare settings are not intended to be enforced by healthcare personnel. this guideline is intended for use by all healthcare per- sonnel involved with the care of people with cf and the ip&c teams that support cf care centers in the united states. the recommendations for healthcare settings apply to inpatient settings, cf clinics and other ambulatory care areas, diag- nostic and therapeutic areas, and all clinical research activities. successful and consistent implementation of ip&c practices must include the ongoing participation of people with cf and their families as well as auditing the ip&c practices of healthcare personnel and feedback about their performance. the goal of this guideline is to reduce substantially the risk of transmission and acquisition of cf pathogens, while rec- ognizing that the risk is unlikely to reach zero. a draft of the guideline was made available to the cf and ip&c communities for review, and all comments were con- sidered by the committee. this guideline was reviewed and endorsed by shea and by the association for professionals in infection control (apic). recommendations the recommendations are divided into sections. i. core recommendations, intended for all people with cf (including following lung or liver transplantation) in all settings ii. recommendations for microbiology and molecular epi- demiology iii. recommendations for cf clinics and other ambulatory settings iv. recommendations for inpatient settings v. recommendations for nonhealthcare settings vi. recommendations for healthcare personnel with cf vii. recommendations regarding the psychosocial and med- ical impact of ip&c to facilitate use of the guideline, the relevant sections of “background information supporting the recommendations” (sections i–iii ) and strategies to reduce transmission and ac- quisition of pathogens (sections iv–vii ) are provided with each recommendation. the recommendations emphasize that healthcare personnel, people with cf, and their family and friends receive education about ip&c that fosters understand- ing of the rationale for the recommendations. the recommendations highlight the importance of part- nering with local ip&c teams to facilitate implementation and the use of existing audit and feedback tools to monitor adherence to ip&c practices. the recommendations empha- size source containment of the respiratory secretions of peo- ple with cf, appropriate use of personal protective equip- ment, and cleaning and disinfection to prevent acquisition of cf pathogens from the contaminated healthcare environ- ment. furthermore, the cf community is encouraged to share best practices, written policies, quality improvement downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i n fec ti on c on tro l a n d h o spit a l e pi dem i olo gy a ug us t , v ol . , n o . s initiatives, educational materials, strategies for non-face-to- face interactions among individuals with cf, and outcome studies related to ip&c practices. the key recommendations in this document that are new for the cf community are as follows: . develop strategies to monitor adherence to ip&c practices by healthcare personnel and provide them with feedback for improvement. . partner with ip&c teams to implement the recommen- dations in this guideline, especially those that are likely to be followed in areas of the facility that are not dedicated only to people with cf. . implement contact precautions (ie, wear a gown and gloves) when caring for all people with cf, regardless of respiratory tract culture results, in both ambulatory and inpatient settings. . separate all people with cf from others with cf, regardless of their respiratory tract culture results, at least feet ( meters) in all settings, to reduce the risk of droplet trans- mission of cf pathogens. . all people with cf and their family members and friends should perform appropriate hand hygiene (with either alcohol-based hand rub or antimicrobial soap and water) when there is the potential for contamination of hands with pathogens. contamination of hands may occur when entering and exiting a cf clinic, clinic exam room, or hospital room or from respiratory secretions after cough- ing, performing pulmonary function tests, or performing chest physiotherapy. . all people with cf, regardless of respiratory tract culture results, should wear a surgical (also called procedure or isolation) mask when in a healthcare setting to reduce the risk of transmission or acquisition of cf pathogens. . perform pulmonary function tests (pfts) to reduce trans- mission from one person with cf to another person with cf by performing the test in one of the following ways: • in the exam room at the beginning of the clinic visit, allowing minutes to elapse between cf patients; • in a negative pressure room (airborne infection isolation room); • in a pft laboratory with high-efficiency particulate (hepa) filters; or • in a pft laboratory without hepa filters, allowing minutes to elapse between individuals with cf. . updated recommendations for care of nebulizers in the hospital. . only person with cf may attend a cf foundation– sponsored indoor event. i–iii. background information supporting the recommendations i. cf microbiology and molecular typing the recommendations for processing cf respiratory tract specimens in the infection control guideline for cf are endorsed in the updated guideline. several molecular typ- ing strategies are reviewed, with a focus on newer technol- ogies, such as whole-genome sequencing. the importance of international efforts in understanding the molecular epide- miology of cf pathogens is discussed, as is the need to use molecular epidemiology as one tool to monitor the success of ip&c strategies. an update on the epidemiology of cf pathogens is provided, with an emphasis on gram-negative pathogens, including burkholderia spp., small colony variant s. aureus, and nontuberculous mycobacteria (ntm). this section also emphasizes the importance of surveillance strat- egies to assess the impact of therapeutic interventions, to identify potential outbreaks, and to monitor the success of ip&c strategies. ii. routes of transmission of cf pathogens in this section, as in the infection control guideline for cf, the importance of contact and droplet transmission is emphasized. while the precise routes of transmission are unclear for every acquisition, data support transmission by direct contact with infectious secretions; indirect contact with infectious secretions through contaminated intermediate ob- jects, such as healthcare surfaces, equipment, or the hands of healthcare personnel; and/or infectious droplets. new data are provided demonstrating that droplets can travel as far as feet ( meters), the complexities of droplet transmission are described, and the potential role played by droplet nuclei in transmission of cf pathogens is discussed. iii. potential sources of cf pathogens in this section, as in the infection control guideline for cf, it is again emphasized that the source of cf pathogens is often unknown and that many individuals with cf are infected with unique strains. however, molecular epidemi- ology tools have expanded the evidence that people with cf can share epidemic strains of p. aeruginosa, burkholderia spp., mrsa, and m. abscessus. less commonly, strains of other gram-negative pathogens (eg, stenotrophomonas maltophilia, achromobacter xylosoxidans, ralstonia, cupriavidus, and pan- doraea spp.) may be shared by people with cf. the adverse clinical impact of epidemic strains is highlighted. the sources of and role played by filamentous fungi in cf lung disease (eg, aspergillus spp.) are also considered. while transmission of cf pathogens among people with cf is very well described, transmission of cf pathogens from individuals without cf to individuals with cf appears to be almost exclusively limited to respiratory viral pathogens. ac- quisition of cf pathogens from animals has not been de- scribed. in contrast, acquisition from the natural environment (ie, soil, organic matter, and water) is feasible given the eco- logic niches of some cf pathogens. the potential for acqui- sition of cf pathogens from contaminated healthcare envi- ronmental sources, including water, surfaces, equipment, air, and products, is also discussed. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s iv. strategies to reduce transmission and acquisition of cf pathogens this section is divided into subsections that describe ip&c strategies and the rationale for implementing them for all people with cf, including those who have undergone lung or liver transplantation. the subsections include education strategies for healthcare personnel and for people with cf and their families, including audits and feedback for health- care personnel performance; hand hygiene for healthcare per- sonnel, people with cf, and their families; use of personal protective equipment, including the appropriate use of gowns and gloves by healthcare personnel for all interactions with people with cf; mask use by healthcare personnel as per cdc recommendations; mask use by individuals with cf; cleaning and disinfection of the healthcare environment and equip- ment, including recommendations for nebulizer care; cf clinic strategies, including recommendations for performing pulmonary function testing; transmission-based precautions for hospitalized people with cf; construction and renovation; and strategies for nonhealthcare settings (eg, camps, indoor and outdoor events, and schools). three additional sections have been developed: “healthcare personnel with cf” (section v ), which provides the rec- ommendation that people with cf who are interested in healthcare professions should seek advice from their cf care teams about lower-risk options on the basis of their health status; “psychosocial and medical impact of transmission- based isolation precautions” (section vi ), in which the un- intended consequences of transmission precautions in both cf and non-cf patient populations as well as strategies to mitigate these are described, including developing non-face- to-face methods of communicating among people with cf; and “challenges to implementation of ip&c recommen- dations” (section vii ), in which challenges experienced by healthcare personnel and by individuals with cf and their families—as well as strategies to overcome them—are dis- cussed. tables, figures, and research agenda tables are provided to supplement the text. these include ( ) the population, intervention, comparison, and outcome (pico) questions the committee developed for the systematic review; ( ) a review of the grading systems used; ( ) the species in the b. cepacia complex; ( ) examples of hand hy- giene opportunities for healthcare personnel, people with cf, and their families; ( ) indications for use of personal pro- tective equipment by healthcare personnel, people with cf, and their families; ( ) strategies to enhance the effectiveness of environmental cleaning in healthcare settings; ( ) strategies for cf clinics to minimize risk of transmission of potential pathogens; ( ) strategies to minimize the adverse psychosocial impact of isolation precautions; ( ) knowledge, attitudes, and practice barriers related to implementing ip&c in cf; and ( ) strategies to enhance implementation of ip&c in cf. two figures are also presented: the age-specific prevalence of cf pathogens in in the united states, and the changing prevalence of cf pathogens in the united states from to . a research agenda is proposed to address some of the un- resolved ip&c issues for the cf community, including, for example ( ) the role played by small colony variant s. aureus; ( ) the frequency of shared strains of cf pathogens, including p. aeruginosa and ntm in the united states; ( ) the routes of transmission of m. abscessus; ( ) the role played by specific niches for cf pathogens in the natural environment; ( ) con- tinued efforts to define best ip&c practices for cf; ( ) con- tinued efforts to assess and overcome challenges to imple- mentation of ip&c; and ( ) additional research into the unique needs of healthcare personnel with cf. summary in summary, epidemiologic studies have shown that patho- gens, other than burkholderia spp., can be transmitted among individuals with cf, resulting in adverse clinical outcomes, including increased morbidity and mortality. the updated guideline is a response to new knowledge and new challenges in both ip&c and cf. the primary objective of the guideline is to provide recommendations to reduce the risk of trans- mission and acquisition of cf pathogens by individuals with cf and to provide a more comprehensive understanding of effective strategies to optimize safety for this unique pop- ulation. i n t r o d u c t i o n in , the cystic fibrosis (cf) foundation published rec- ommendations for infection prevention and control (ip&c) in an effort to reduce the risk of acquisition and transmission of pathogens among people with cf. however, both ip&c and cf are dynamic disciplines, and during the past decade new knowledge and new challenges necessitated the devel- opment of updated ip&c strategies for this unique pop- ulation. . ip&c experiences in the general population can provide insight into strategies for people with cf. numerous evi- dence-based guidelines for ip&c and clinical practice guide- lines have been published since by the centers for dis- ease control and prevention (cdc)/healthcare infection control practices advisory committee (hicpac), the world health organization (who), and professional societies, in- cluding the infectious diseases society of america (idsa) and the society for healthcare epidemiology of america (shea). these guidelines contain relevant recommendations for people with cf (see table for the most relevant guide- lines). - in addition, each year the cdc/advisory committee on immunization practices (acip) updates the recommenda- tions for immunizations in children and adults and the rec- ommendations for the prevention of influenza for the up- coming season; these recommendations are published in morbidity and mortality weekly report (mmwr). relevant downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nfec ti on c o nt ro l a n d h o spi ta l e p idem i olo gy a u gus t , v ol . , n o . s table . infection prevention and control guidelines published since guideline organization reference guidelines for environmental infection control in health-care facilities, cdc/hicpac guidelines for preventing health-care–associated pneumonia, cdc/hicpac guidelines for preventing the transmission of mycobacterium tuberculosis in health-care settings, cdc/nchhstp management of multidrug-resistant organisms in health care settings, cdc/hicpac guideline for isolation precautions: preventing transmission of infectious agents in health care settings, cdc/hicpac disinfection and sterilization in health-care facilities, cdc/hicpac strategies to prevent transmission of methicillin-resistant staphylococcus aureus in acute care hospitals, idsa/shea guidelines on hand hygiene in healthcare, who infection prevention for outpatient settings: minimum expectations for safe care, cdc/hicpac immunization of health-care personnel: recommendations of the advisory committee on immunization practices cdc/acip infection prevention and control in residential facilities for pediatric patients and their families, shea clinical practice guideline for vaccination of the immunocompromised host, idsa note. acip, advisory committee on immunization practices; cdc, centers for disease control and prevention; hicpac, healthcare infection control practices advisory committee; hiv, human immunodeficiency virus; idsa, infectious diseases society of america; nchhstp, national center for hiv/aids, viral hepatitis, std, and tb prevention; shea, society for healthcare epidemiology of america; std, sexually transmitted diseases; tb, tuberculosis; who, world health organization. recommendations from both ip&c guidelines and acip rec- ommendations have been integrated into this updated ip&c guideline for people with cf. furthermore, during the past decade new evidence has led to a renewed emphasis on source containment of potential pathogens, the role played by the contaminated healthcare environment in transmitting infec- tious agents, and an increased understanding of the impor- tance of implementation science, monitoring adherence, and feedback principles to enhance the effectiveness of ip&c prac- tices as detailed throughout this document. . experience with emerging pathogens can inform ip&c strategies for cf. the severe acute respiratory syndrome co- ronavirus (sars-cov) and the influenza a h n pan- demic expanded our understanding of droplet transmission of infectious agents. , , while the incidence of healthcare- and community-associated infections caused by methicillin- resistant staphylococcus aureus (mrsa) has been decreasing in adults in the united states in recent years, a similar trend has not been observed among children. additionally, mul- tidrug-resistant gram-negative pathogens continue to emerge and are increasing in healthcare settings, which has height- ened the awareness of healthcare personnel and the public of the importance of preventing patient-to-patient transmis- sion of multidrug-resistant organisms (mdros). , , . changes in the demographic characteristics of the cf population and in the epidemiology of cf pathogens during the past decade have implications for ip&c. the median predicted life expectancy of people with cf has increased to years of age. in the united states and in many other countries, the number of adults with cf is comparable to or has surpassed the number of children with cf. newborn screening for cf is now mandated in all states in the united states. newer cf pathogens are increasing in prev- alence and are associated with increased rates of morbidity and mortality among individuals with cf. such pathogens include mrsa, , mycobacteria abscessus, burkholderia do- losa, new species in the burkholderia cepacia complex, ep- idemic clones of pseudomonas aeruginosa (eg, the liverpool epidemic strain [les]), - and others. thanks to the in- creasing use of molecular typing, strains that are shared among people with cf continue to be identified, suggesting that new strategies beyond those recommended in the infection control guideline for cf are needed to improve the implementation of ip&c practices and to reduce the transmission of cf pathogens. while extraordinary advances have been made in the treat- ment of cf, including the use of potentiators and correctors aimed at correcting the abnormal cf transmembrane con- ductance regulator (cftr), the cf and the ip&c com- munities must continue to prioritize minimizing the risk of acquisition and transmission of cf pathogens. to update the infection control guideline for cf, the cf foundation assembled an interdisciplinary committee to ( ) review ex- isting literature and present new knowledge that served as the basis for the updated ip&c practice recommendations; ( ) assess the relevance of existing guidelines and integrate appropriate recommendations, including those from the infection control guideline for cf; ( ) craft updated rec- ommendations; and ( ) address strategies to improve imple- mentation of ip&c practices, including education and over- coming challenges to implementation. the process the committee undertook to complete its tasks, downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s including the systematic review, is described below. the groups of updated ip&c recommendations are as follows: (i) core recommendations for all people with cf (including following lung or liver transplantation) in all settings; (ii) recommendations for microbiology and molecular epide- miology; (iii) recommendations for cf clinics and other am- bulatory care settings; (iv) recommendations for inpatient settings; (v) recommendations for nonhealthcare settings; (vi) recommendations for healthcare personnel with cf; and (vii) recommendations for the psychosocial and medical im- pact of ip&c. to facilitate use of the guideline, the relevant sections of “background information supporting the rec- ommendations” (sections i–iii ) and strategies to reduce transmission and acquisition of pathogens (sections iv–vii) are provided for each recommendation as supporting ra- tionale. this guideline is intended for use by all healthcare per- sonnel involved with the care of people with cf and the ip&c teams that support cf care centers in the united states. the recommendations for healthcare settings are intended to be implemented in cf clinics and other ambulatory care areas, in inpatient settings, in diagnostic and therapeutic areas, and during all clinical research activities. the recommendations for nonhealthcare settings presented in this updated guideline are not intended to be enforced by healthcare personnel but instead represent efforts to respond to questions and concerns voiced by people with cf and their caregivers and to provide education about the potential risks associated with various activities or exposures. people with cf and their families and friends will then be better prepared to make informed choices in their personal lives. m e t h o d s f o r d o c u m e n t d e v e l o p m e n t committee structure in march , the cf foundation requested volunteers to participate in developing an update of the infection control guideline for cf. the -member interdisciplinary committee consisted of infectious disease specialists (all of whom had expertise in ip&c and cf microbiology), pul- monologists, nurses, respiratory therapist, infection pre- ventionist, parents of children with cf, adult with cf, social worker, and cf foundation staff members (a pul- monologist and a nurse). in november , the committee assembled and devel- oped the scope of the guidelines by identifying clinical ques- tions to be addressed, using the population, intervention, comparison, and outcome (pico) format. to evaluate the published evidence for answers to these questions, the cf foundation commissioned an evidence review from a johns hopkins university team under the leadership of an epide- miologist (k.a.r.) with experience in conducting systematic reviews, including those assessing interventions used in the cf population. the pico questions used to guide the evi- dence search are presented in table . systematic review process for the systematic review, searches of pubmed, embase, and the cochrane central register of controlled studies were conducted by the johns hopkins university research team in june . searches of reference lists for all eligible articles and cochrane reviews were also completed. committee mem- bers provided additional potentially eligible studies. studies performed in the cf population were sought preferentially, but studies conducted in other populations considered rel- evant were also reviewed. two independent reviewers screened search results for eligible studies. details about el- igible studies were abstracted and a report, including evidence tables and qualitative synthesis, was submitted to the cf foundation and disseminated to the committee. additionally, the johns hopkins university research team identified relevant guidelines and cochrane reviews through searches (completed in august ) of the national guide- lines clearinghouse, united kingdom cf trust website, cf foundation guidelines database, the cochrane library, and lists provided by the committee chairs. details from these sources, including recommendation statements, were ab- stracted and provided to the committee. results of the systematic review the search identified eligible articles reporting unique studies. these included before-and-after studies, cross- sectional studies, and nonconcurrent cohort studies, but these studies provided insufficient evidence to use the us preventive services task force grading system that has been used for other recent cf practice guidelines. , the system- atic review team also abstracted , recommendation state- ments from relevant ip&c guidelines. evidence tables can be obtained from the cf foundation on request (resources@cff.org). process for inclusion of recommendations each recommendation from the infection control guideline for cf was reviewed for continued relevance and modified if clarification was needed or if new data were avail- able. the grade of evidence from the infection control guideline for cf was retained. relevant recommendations from other cf practice guidelines were included verbatim. relevant recommendations from other guidelines developed for non-cf populations by other expert professional orga- nizations, including cdc/hicpac, shea, idsa, who, apic, and acip were also included, and their grade of evi- dence was retained without a vote by the committee (table ). , new recommendations that had not been published previously were developed by the committee. inclusion of the recommendations was determined by anonymous voting. at least % approval by the committee members (ie, consensus) was set as the threshold for acceptance of new recommen- dations, relevant recommendations from the infection downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. mailto:resources@cff.org https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h o sp ita l e p ide mi ol ogy a u gu st , v o l. , n o . s table . population, intervention, comparison, and outcome (pico) clinical questions developed for the guideline for infection prevention and control in cystic fibrosis (cf): update microbiology . does identification of small colony variant staphylococcus aureus versus not performing identification of small colony variant s. aureus affect clinical outcomes of people with cf experiencing exacerbation? transmission: personal protective equipment a. what is the evidence for benefit or harm of people with cf wearing masks in the healthcare setting versus not wearing masks? b. what is the evidence for benefit or harm of healthcare providers wearing masks versus not wearing masks when caring for people with cf? a. what is the evidence for benefit or harm of people with wearing gowns versus not wearing gowns in healthcare settings? b. what is the evidence for benefit or harm of healthcare providers wearing gowns versus not wearing gowns when caring for people with cf? a. what is the evidence for benefit or harm of people with cf wearing gloves versus not wearing gloves in healthcare settings? b. what is the evidence for benefit or harm of healthcare providers wearing gloves in healthcare setting versus not wearing gloves among people with cf? transmission: distance for droplets . what is the evidence that more than feet distance between people with cf versus feet or less is required to prevent droplet transmission? transmission: methicillin-resistant s. aureus (mrsa) a. what is the evidence that separation versus nonseparation reduces mrsa transmission from people without cf who have skin and soft-tissue infection (ssti) to prevent respiratory tract infection in people with cf? b. what is the evidence that separation versus nonseparation of people with cf with mrsa respiratory tract infections reduces mrsa transmission to others with cf? c. what is the evidence that separation versus nonseparation of people with cf with mrsa respiratory tract infections reduces mrsa transmission and prevents ssti in people without cf? transmission: nonhealthcare settings . what is the evidence that restriction versus nonrestriction reduces transmission of cf pathogens in indoor and/or outdoor nonhealthcare settings where more than person with cf is present (eg, fund-raising events, cystic fibrosis chapter offices, phar- maceutical company venues, great strides)? a. what is the evidence among people with cf that restriction versus nonrestriction reduces transmission of cf pathogens from leisure activities involving soil and plants (eg, gardening and lawn care)? b. what is the evidence that among people with cf restriction versus nonrestriction reduces transmission of cf pathogens from leisure activities involving aquatic settings, hot tubs, swimming pools, and natural bodies of water? transmission: animals a. what is the evidence that among people with cf restriction versus nonrestriction reduces transmission of cf pathogens from pet therapy? b. what is the evidence that among people with cf restriction versus nonrestriction reduces transmission of cf pathogens from personal pets or farm animals? transmission: healthcare personnel with cf . what is the evidence that a healthcare provider with cf should be restricted versus not restricted from working with people with cf to prevent transmission of cf pathogens from a healthcare provider with cf to his or her patients and vice versa? transmission: scheduling cf clinic visits . what is the evidence that scheduling cf clinic visits on the basis of pathogen status (separate clinic times) versus not sched- uling cf clinic visits on the basis of pathogen status (no separate clinic times) reduces transmission of cf pathogens? cleaning respiratory equipment a. what is the evidence for cleaning and disinfecting respiratory equipment of people with cf after each use versus some other frequency for cleaning to prevent contamination and transmission of cf pathogens in the hospital? b. what is the evidence for cleaning and disinfecting respiratory equipment of people with cf after each use versus some other frequency for cleaning to prevent contamination and transmission of cf pathogens in the home? c. what is the evidence for cleaning and disinfecting respiratory equipment of people with cf with one method versus another method for cleaning to prevent contamination and transmission of cf pathogens in the hospital? d. what is the evidence for cleaning and disinfecting respiratory equipment of people with cf with one method versus another method for cleaning to prevent contamination and transmission of cf pathogens in the home? control guideline for cf, or relevant recommendations from other guidelines developed for non-cf populations. the cdc/hicpac guidelines and the who hand hygiene guideline cited in this document used a unique hicpac grad- ing system that was used for hicpac guidelines published before . the grading of recommendations, assessment, development, and evaluation (grade) system was adopted for use by cdc/hicpac/acip in , and is downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s table . grading systems used in the updated infection prevention and control (ip&c) guidelines for cystic fibrosis (cf), source of recommendation grading strategy comments infection control guideline for cf and cdc hicpac guidelines , , - , and who guidelines on hand hy- giene in healthcare, category ia category ib category ic category ii no recommendation strongly recommended for implementation and strongly supported by well- designed experimental, clinical, or epidemiologic studies strongly recommended for implementation and supported by some experimen- tal, clinical, or epidemiologic studies and a strong theoretical rationale required for implementation, as mandated by federal and/or state regulation or standard suggested for implementation and supported by suggestive clinical or epidemi- ologic studies or a theoretical rationale unresolved issue;a practices for which insufficient evidence or no consensus re- garding efficacy exist systematic review not applicable limited evidence was found by the systematic review conducted for the ip&c guideline; thus, the grading of evidence was not used updated ip&c guideline for cf % agreement certainty: low ≥ % agreed with statement by anonymous voting ! % agreed with statement by anonymous voting and thus insufficient evi- dence exists to recommend for or against note. cdc, centers for disease control and prevention; hicpac, healthcare infection control practices advisory committee; who, world health organization. a the unresolved issue category was not included in the who hand hygiene guidelines. used by more than organizations worldwide. however, the grade system can result in ip&c guidelines that are more likely to include expert consensus compared with guidelines developed for specific treatment regimens that have random- ized clinical trials as their evidence base. limitations of the grade system that may impact developing ip&c guidelines include ( ) questions for which little or no evidence is avail- able on which to base a recommendation, ( ) little or no requirement for evidence given the high probability of a rec- ommendation’s success, and ( ) difficulty assessing the strength of evidence from studies performed in varying pop- ulations with varying study designs. , the evidence base for this updated guideline had similar limitations; thus, the rec- ommendations in this guideline are often based on expert consensus. external review in may , the cf foundation made a draft of the updated guideline available for comment to the cf community, in- cluding the teams at cf care centers and people with cf. infection preventionists and healthcare epidemiologists were also notified of the availability of the document for comment. all comments were considered by the committee, and the recommendations and background information were revised as appropriate. this guideline was reviewed and endorsed by shea and by apic. u p d a t e d r e c o m m e n d a t i o n s f o r i p & c i n c f i. core recommendations the cf foundation recommends implementation of the fol- lowing core ip&c recommendations to minimize the risk of transmission and acquisition of pathogens among all people with cf, including following lung or liver transplantation, in all settings. education/adherence monitoring for healthcare personnel, people with cf, and families . the cf foundation recommends that all healthcare per- sonnel caring for people with cf (eg, the cf care team, inpatient staff, environmental services staff, research staff, and staff in diagnostic and therapeutic areas, including pulmonary function test [pft] laboratories, radiology, phlebotomy, op- erating room, and physical therapy) receive education re- garding ip&c for cf, using principles of adult learning. ed- ucation should be repeated at intervals each center deems appropriate. source of supporting evidence: cf ip&c guideline, category ii; mdro guideline, category ib; transmission guideline, category ib cf ip&c guideline consensus: % sections in the text: iii.d. ; iv.b downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h o sp ita l e p idem i olo gy a u gu st , v o l. , n o . s . the cf foundation recommends that the cf care team develop strategies to monitor adherence to ip&c practices by healthcare personnel and provide feedback. feedback to the cf care team includes immediate feedback to an indi- vidual when a lapse in practice is observed and feedback to the entire cf care team of trends of overall adherence rates at regular intervals (eg, quarterly) on the basis of consistency of practices. source of supporting evidence: cf ip&c guideline, category ib; mdro guideline, category ib; transmission guideline, category ib cf ip&c guideline consensus: % sections in the text: iv.b; iv.e. . the cf foundation recommends that all people with cf and their families receive education regarding ip&c for cf, using age appropriate tools and reading/language level appro- priate to the target audience. involve people with cf and their families in the development of educational programs and im- plementation of recommended practices. education should be repeated at intervals each center deems appropriate. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: iv.b partnering with institutional ip&c teams . the cf foundation recommends that cf care teams collaborate with their institutional ip&c teams to implement the recommendations in this guideline. source of supporting evidence: mdro guideline, category ib cf ip&c guideline consensus: % sections in the text: i.d; iv.b; iv.e. , ; iv.f . the cf foundation recommends that cf care teams collaborate with their institutional ip&c teams to develop protocols, checklists, and audits to standardize implemen- tation of practices for the following: a. single-patient-use, disposable items b. cleaning and disinfecting multiuse items (eg, patient care equipment, oximeters, ipads and similar tablets, and computers) c. cleaning and disinfecting surfaces in the healthcare en- vironment (eg, cf clinics, pft rooms, hospital rooms, and sinks and showers) source of supporting evidence: disinfection and ster- ilization guideline, category ii; http://www.cdc.gov /hai/toolkits/evaluating-environmental-cleaning.html cf ip&c guideline consensus: % sections in the text: iii.d. ; iv.e. ; iv.f. , . the cf foundation recommends ensuring that dust containment during renovation and construction and water- leak remediation policies and practices are followed according to institutional and national guidelines in all ambulatory care areas and inpatient settings where people with cf receive care. source of supporting evidence: cf ip&c guideline, category ib/ic; cdc environmental guideline, category ib/ic ip&c guideline consensus: % sections in the text: iii.d. ; iv.h . the cf foundation recommends that healthcare per- sonnel assume that all people with cf could have pathogens in respiratory tract secretions that are transmissible to other people with cf. source of supporting evidence: cf ip&c guideline, category ia cf ip&c guideline consensus: % sections in the text: iv.f. ; iv.g practices for healthcare personnel . the cf foundation recommends that all healthcare fa- cilities caring for people with cf ensure ready availability of alcohol-based hand rub or antimicrobial soap and water in all patient rooms, pft rooms, and waiting areas. source of supporting evidence: cf ip&c guideline, category ia; who and hand hygiene guide- lines, category ia cf ip&c guideline consensus: % sections in the text: iv.b; iv.f. . the cf foundation recommends that healthcare per- sonnel perform hand hygiene (either using alcohol-based hand rub or washing hands with antimicrobial soap and wa- ter), as per cdc and who guidelines, in the following clin- ical situations: a. before entering the room and when leaving the room of any patient b. before and after direct contact with any patient c. before putting gloves on and after removing gloves, for both sterile and nonsterile procedures d. after contact with patient’s skin, mucous membranes, re- spiratory secretions, or other body fluids e. after contact with inanimate objects (including medical equipment) in the vicinity of the patient that may be po- tentially contaminated with respiratory secretions source of supporting evidence: cf ip&c guideline, category ia; who and hand hygiene guide- lines, category ia sections in the text: iv.c; iv.f. . the cf foundation recommends that healthcare per- sonnel should not wear artificial fingernails or nail extenders when having direct contact with people with cf. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. http://www.cdc.gov/hai/toolkits/evaluating-environmental-cleaning.html http://www.cdc.gov/hai/toolkits/evaluating-environmental-cleaning.html https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s source of supporting evidence: hicpac hand hygiene, category ia for high-risk patients; who hand hygiene, category ia for all patients sections in the text: iv.c . the cf foundation recommends that healthcare per- sonnel should disinfect their stethoscopes before and after use on each patient in accordance with institutional ip&c policies. stethoscopes that remain in the patient’s room and are dedicated for use only for that patient do not need to be disinfected before and after use. source of supporting evidence: mdro guideline, category ib cf ip&c guideline consensus: % sections in the text: iii.d. ; iv.e. ; iv.f. ; iv.g . the cf foundation recommends that healthcare per- sonnel caring for people with cf should not be routinely screened for mrsa colonization unless they are epidemi- ologically linked to a cluster of mrsa infections in accor- dance with institutional ip&c policies and national guide- lines. source of supporting evidence: mdro guideline, category ib sections in the text: iii.b. isolation precautions . the cf foundation recommends that all healthcare personnel implement contact precautions (ie, wear a gown and gloves) when caring for all people with cf regardless of respiratory tract culture results, in ambulatory and inpatient settings. source of supporting evidence: transmission guideline, category ib/ic cf ip&c guideline consensus: % sections in the text: ii.a; iv.d. ; iv.g . the cf foundation does not recommend that health- care personnel wear a mask routinely when caring for people with cf. however, the cf foundation recommends mask use per cdc guidelines, as follows: a. surgical (procedure, isolation) masks are worn by health- care personnel caring for any patient under droplet pre- cautions with suspected or confirmed pathogens that are transmitted by the droplet route (eg, adenovirus, rhino- virus, influenza virus, or mycoplasma pneumoniae). b. masks and eye protection should be worn by healthcare personnel if splashes or sprays of respiratory tract secre- tions are anticipated as per standard precautions. c. n- respirators (masks) or powered air-purifying respi- rators (paprs) are worn by healthcare personnel caring for any patient under airborne precautions (in an airborne infection isolation room [aiir]) for suspected or con- firmed infection with mycobacterium tuberculosis. source of supporting evidence: cf ip&c guideline, category ia; transmission guideline, category ib; transmission guideline, category ib; tuber- culosis (tb) transmission guideline sections in the text: ii.c; iv.d. ; iv.g . the cf foundation recommends placing people with cf who are acid-fast bacilli (afb) smear positive for the first time under airborne precautions (aiir requirements: nega- tive-pressure single room, more than air exchanges per hour, air exhausted to the outside) in ambulatory and in- patient settings until m. tuberculosis infection has been ex- cluded. alternatively, in geographic locations with a very low incidence of tb, a risk assessment that includes the likelihood of exposure to individuals with tb (eg, travel or visitors from high-prevalence areas) may be used to guide the use of aiirs. consult with institutional ip&c staff and/or infectious disease physicians. source of supporting evidence: cf ip&c guideline, category ia; m. tuberculosis transmission guide- line; transmission guideline, category ia/ic cf ip&c guideline consensus: % sections in the text: iv.d. ; iv.g . the cf foundation concludes that there is insufficient evidence at the time of publication of this document for or against placing people with cf who are infected with ntm under airborne precautions. cf ip&c guideline, certainty: low sections in the text: iii.a. ; iii.d. ; iv.g practices by people with cf and family members/friends . the cf foundation recommends that all people with cf, regardless of their respiratory tract culture results, be separated by at least feet ( meters) from other people with cf in all settings, to reduce the risk of droplet transmission of cf path- ogens. this does not apply to members of the same household. cf ip&c guideline consensus: % sections in the text: ii.a; ii.b; ii.c; iii.d. ; iv.f. , . the cf foundation recommends that all people with cf and their family members/friends perform hand hygiene (with either alcohol-based hand rub or antimicrobial soap and water) when there is potential for contamination of hands with pathogens, such as the following: a. entering and exiting cf clinics, clinic exam rooms, or hospital rooms b. hands become contaminated with respiratory secretions (eg, after coughing or performing pfts or chest physio- therapy) source of supporting evidence: cf ip&c guideline, category ia cf ip&c guideline consensus: % sections in the text: ii.a; iv.c; iv.f. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nfe cti o n c ont ro l a n d h o sp ita l e p idem i olo gy a u gu st , v o l. , n o . s . the cf foundation does not recommend that people with cf wear gowns or gloves in cf clinics, in other am- bulatory healthcare settings, or while hospitalized. cf ip&c guideline consensus: % sections in the text: iv.c; iv.d. . the cf foundation recommends that people with cf be instructed to follow respiratory hygiene practices to con- tain their secretions when coughing or sneezing (ie, cough into a tissue, immediately discard soiled tissue into a trash receptacle, and perform hand hygiene after disposing of soiled tissues). a covered trash receptacle with a foot pedal is pre- ferred. source of supporting evidence: cf ip&c guideline, category ii; transmission guideline, category ib cf ip&c guideline consensus: % sections in the text: iv.a; iv.d. ; iv.f. . the cf foundation recommends that all people with cf wear a surgical (procedure, isolation) mask when in a healthcare facility to reduce the risk of transmission or ac- quisition of cf pathogens. masks should be worn throughout the facility, including in restrooms. masks should not be worn during pulmonary function testing, in the clinic exam room, or in the patient’s hospital room. if the optimal size mask is not available (eg, for small infants), use the smallest mask available. if a mask is not tolerated by an individual with cf who is having respiratory distress, encourage that person to follow respiratory hygiene practices. masks should be changed when wet. source of supporting evidence: transmission guideline, category ib cf ip&c guideline consensus: % sections in the text: ii; iv.f. . the cf foundation recommends that all people with cf who do not live in the same household avoid activities and risk factors that are associated with transmission of cf pathogens in nonhealthcare and healthcare settings, including the following: a. social contact between people with cf b. physical contact between people with cf (eg, handshakes, kissing, and intimate contact) c. car rides with another person with cf d. sharing hotel rooms with another person with cf e. fitness class with another person with cf activities that all people with cf, including those who live in same household, should avoid include the following: a. sharing personal items (eg, toothbrush and drinking uten- sils) with another person with cf b. sharing respiratory therapy equipment source of supporting evidence: cf ip&c guideline, category ia; residential facility guideline cf ip&c guideline consensus: % sections in the text: iii.a. ; iv.i . the cf foundation recommends that a. tap water or well water that meets local public health standards, distilled water, or bottled water may be used by people with cf i. for drinking ii. for bathing iii. for cleaning nebulizers and other respiratory equip- ment (eg, airway clearance devices, spacers, and neti pots) if followed by disinfection iv. for the water needed for heat disinfection (eg, boiling, microwaving, and steam sterilizing) b. only sterile water be used for nasal rinses (eg, neti pots), filling of humidifier reservoirs, and as a final rinse of re- spiratory equipment (eg, after cold disinfection) ip&c guideline consensus: % sections in the text: iii.d. ; iii.d. ; iv.e. ; iv.e. immunizations/influenza chemoprophylaxis . the cf foundation recommends that, as per cdc/ acip recommendations, all healthcare personnel (unless there is a medical contraindication to immunization) should be immunized or have evidence of immunity to mumps, measles, rubella, varicella, pertussis (tdap), and hepatitis b and receive an annual influenza immunization. source of supporting evidence: mmwr ; (rr- ): – ; http://www.cdc.gov/vaccines/schedules/index.html sections in the text: iv.i. . the cf foundation recommends that, as per cdc/ acip recommendations, all people with cf and their family members/close contacts receive recommended vaccines at the recommended schedule, age, dose, and route of administra- tion unless there is a medical contraindication. source of supporting evidence: mmwr ; (rr- ): – ; http://www.cdc.gov/vaccines/schedules/index.html sections in the text: iv.i. . the cf foundation recommends use of antiviral che- moprophylaxis or treatment (eg, oseltamivir) for prevention or treatment of influenza according to acip recommendations. source of supporting evidence: cf ip&c guideline, cat- egory a; http://www.cdc.gov/flu/professionals/antivirals /summary-clinicians.htm ( – season) cf ip&c guideline consensus: % sections in the text: iv.i. research settings . the cf foundation recommends that for all research activities, people with cf, their family members/friends, and healthcare personnel follow relevant ip&c recommendations for that healthcare setting. cf ip&c guideline consensus: % sections in the text: iii.a downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. http://www.cdc.gov/vaccines/schedules/index.html http://www.cdc.gov/vaccines/schedules/% index.html http://www.cdc.gov/flu/professionals/antivirals/summary-clinicians.htm http://www.cdc.gov/flu/professionals/antivirals/summary-clinicians.htm https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s ii. recommendations for microbiology and molecular epidemiology in addition to the microbiology recommendations for pro- cessing cf respiratory specimens described in the infec- tion control guideline for cf, the cf foundation recommends implementation of the following recommendations: review center-specific microbiology data . the cf foundation recommends that all cf centers obtain and review center-specific quarterly surveillance re- ports (eg, data from the local clinical microbiology laboratory or the cf foundation patient registry) of the incidence and prevalence of respiratory tract pathogens at their centers. this review should be conducted in collaboration with institu- tional ip&c teams and microbiology laboratory directors. source of supporting evidence: cf ip&c guideline, category ib; mdro guideline, category ib cf ip&c guideline consensus: % sections in the text: i.d; iv.f. molecular typing . the cf foundation recommends that cf isolates of burkholderia spp. be sent to the laboratory at the university of michigan (us) for confirmation of identification, speci- ation, and molecular typing, as follows: a. all initial isolates from every patient b. at least isolate per patient per year c. any isolates suspected of being associated with transmis- sion or an outbreak d. any other nonfermenting gram-negative organism for which species identification remains equivocal after routine analysis should be sent for confirmation of identification cf foundation burkholderia cepacia research laboratory and repository university of michigan msrb iii, spc west medical center drive ann arbor, mi - tel: - - ; fax: - - ; e-mail: jlipuma @umich.edu source of supporting evidence: cf ip&c guideline, category ib cf ip&c guideline consensus: % sections in the text: i.b; iii.a. . the cf foundation recommends that molecular typing of b. cepacia complex isolates and other microorganisms (eg, p. aeruginosa and ntm) be performed when epidemiologically indicated (eg, suspected patient-to-patient transmission). source of supporting evidence: cf ip&c guideline, category ia; mdro guideline, category ib cf ip&c guideline consensus: % sections in the text: i.b; i.d; iii.a . the cf foundation recommends that molecular typing be performed using an appropriate genotyping method (eg, pulsed-field gel electrophoresis, random-amplified poly- morphic dna polymerase chain reaction [pcr], repetitive sequence-based pcr, or multilocus sequence typing). source of supporting evidence: cf ip&c guideline, category ia; mdro guideline, category ib cf ip&c guideline consensus: % sections in the text: i.b; iii.a. ; iii.a. ; iii.a. surveillance . the cf foundation and european cf society (ecfs) recommend that screening cultures for ntm should be per- formed annually in individuals with a stable clinical course. culture and smears for afb from sputum should be used for ntm screening. in the absence of clinical features suggestive of ntm pul- monary disease, individuals who are not capable of sponta- neously producing sputum do not require screening cultures for ntm. the cf foundation and ecfs recommend against the use of oropharyngeal swabs for ntm screening. source of supporting evidence: ntm in cf guideline ip&c guideline consensus: % sections in the text: i.c. ; iii.a. . the cf foundation concludes that there is insufficient evidence at the time of publication of this document to rec- ommend criteria by which to consider a person with cf who previously had burkholderia species isolated from respiratory tract cultures to be burkholderia-free. ip&c guideline, certainty: low sections in the text: iv.f. iii. recommendations for cf clinics and other ambulatory care settings in addition to the core recommendations, the cf foundation recommends implementing the following recommendations in cf clinics and other ambulatory care areas, including those clinics where people with cf who have undergone lung or liver transplantation are followed. scheduling in cf clinics . the cf foundation recommends that cf clinics sched- ule and manage people with cf in ways to minimize time in common waiting areas. such strategies include the follow- ing: a. stagger clinic schedule b. place people with cf regardless of their respiratory culture results in an exam room immediately on arrival to the clinic c. use a pager system or personal cell phone to alert people with cf that an exam room is available d. keep a person with cf in one exam room while the cf care team rotates through the exam room downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. mailto:jlipuma@umich.edu mailto:jlipuma@umich.edu https://www.cambridge.org/core s i n fec ti on c o nt rol a n d h o spi ta l e p idem i olo gy a u gus t , v ol . , n o . s e. do not share common items (eg, clinic computer and toys), and request that people with cf bring their own recreational items to clinic appointments source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: ii; iii.d. ; iv.f. , , . the cf foundation recommends that infants under years of age be separated from other people with cf in cf clinics until adequate infection control education has been provided to and is understood by the caregivers. source of supporting evidence: cf foundation guide- line management of infants with cf consensus, cer- tainty: low; benefit: moderate sections in the text: ii; iii.a; iv.b; iv.f. , , . the cf foundation recommends that all newly diag- nosed people with cf be separated from other people with cf in cf clinics until adequate ip&c education has been provided to and is understood by newly diagnosed individuals and their caregivers. cf ip&c guideline consensus: % sections in the text: ii; iii.a; iv.b; iv.f. , . the cf foundation concludes that there is insufficient evidence at the time of publication of this document for or against routinely scheduling cf clinics on the basis of specific pathogens isolated from respiratory tract cultures. cf ip&c guideline, certainty: low sections in the text: iii.a; iv.f. pulmonary function testing . the cf foundation recommends that pfts be per- formed in one of the following ways: a. in the exam room at the beginning of the clinic visit b. in a negative-pressure room (aiir) c. in a pft laboratory with either portable or integrated hepa filters d. in a pft laboratory without hepa filtration, allowing minutes to elapse before the next person with cf enters the pft laboratory ip&c guideline consensus: % sections in the text: ii.e; iii.d. ; iv.a; iv.f. environmental practices . the cf foundation recommends that exam rooms be cleaned and disinfected between patients using a -step pro- cess and environmental protection agency (epa)–registered hospital-grade disinfectant/detergent designed for house- keeping in accordance with institutional ip&c policies. source of supporting evidence: cf ip&c guideline, category ib cf ip&c guideline consensus: % sections in the text: iii.d. ; iv.f. designing a new cf clinic . the cf foundation recommends that the leadership staff of cf centers collaborate with the institutional ip&c and planning design and construction departments when de- signing a new cf clinic to ensure a design that includes the following: a. provision for management of people with cf who require airborne precautions b. appropriate number of exam rooms c. single-person restrooms d. adequate space for personal protective equipment (eg, masks, gowns, and gloves) at the point of use cf ip&c guideline consensus: % sections in the text: ii.e; iii.d. ; iv.f; iv.g iv. recommendations for inpatient settings in addition to the core recommendations, the cf foundation recommends implementing the following recommendations in inpatient settings, including those units where people with cf who have undergone lung or liver transplantation are located. room placement . the cf foundation recommends that people with cf be placed in a single-patient room. only people with cf who live in the same household may share a hospital room. source of supporting evidence: cf ip&c guideline, category ii; mdro guideline, category ib cf ip&c guideline consensus: % sections in the text: ii; iv.g . the cf foundation recommends placing people with cf who are solid-organ transplant recipients in a single- patient room in accordance with institutional policy and na- tional guidelines. there is insufficient evidence to recommend for or against protective environment (ie, positive pressure room and hepa filtration) for solid-organ recipients. source of supporting evidence: cf ip&c guideline, category ii; transmission guideline, no recommen- dation, unresolved issue cf ip&c guideline consensus: % sections in the text: ii; iv.g practices for people with cf and their families . the cf foundation recommends evaluating people with cf on a case-by-case basis in accordance with institu- tional ip&c policies for participation in activities outside the downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s hospital room (eg, walking in the hallway, going to the play- room, physical therapy, exercise room, or school room) only when no other person with cf is present and under the su- pervision of a trained staff member. considerations include the capability of a person with cf to contain his or her respiratory tract secretions, age, endemic levels of pathogens in an individual center, and adherence to the following practices: a. perform hand hygiene and put on a mask immediately before leaving patient rooms b. after a person with cf has left a hospital activity room, clean surfaces and touched items with an epa-registered hospital disinfectant/detergent source of supporting evidence: cf ip&c guideline, category ib/ii cf ip&c guideline consensus: % sections in the text: ii; iv.e. ; vi . the cf foundation recommends that all people with cf perform all respiratory interventions (eg, aerosol therapy, airway clearance, and collection of respiratory tract cultures) in the patients’ rooms. if people with cf who live in the same household are sharing a room, these procedures should be performed when the second person is not in the room, whenever possible. source of supporting evidence: cf ip&c guideline, category ib cf ip&c guideline consensus: % sections in the text: ii; ii.c; ii.d; ii.e; iii.d. . the cf foundation recommends that airway clearance devices (eg, flutter, acapella, pep device, and therapy vest) be for single-patient use only, in accordance with institutional ip&c policies. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: iii.d. ; iv.a; iv.g . the cf foundation recommends following institu- tional ip&c policies for the use of masks, gowns, and gloves by individuals who are visiting hospitalized people with cf. source of supporting evidence: transmission guideline, no recommendation, unresolved issue ip&c guideline consensus: % sections in the text: ii; iv.d. ; iv.d. care of nebulizers in the hospital . the cf foundation recommends the following: a. nebulizers are for single-patient use only b. aseptic technique is always followed when handling the nebulizer and dispensing medications c. single-dose vials of medication used in nebulizers are always preferred d. handheld disposable nebulizers are managed as follows: i. after each use, rinse out residual volume with sterile water and wipe mask/mouthpiece with an alcohol pad ii. discard the nebulizer every hours e. handheld reusable nebulizers (eg, home equipment) are managed as follows: i. after each use, clean, disinfect, rinse with sterile water (if applicable, following cold disinfection method), and air dry away from sink ii. after each use, the nebulizer can be reprocessed (eg, by steam sterilization) if the reprocessing is performed ac- cording to the manufacturer’s instructions and the cf foundation recommendations for home care (rec. ) and if the nebulizer can be returned to the patient in time for the next treatment source of supporting evidence: cf ip&c guideline, category ii; pneumonia guidelines, category ib; ster- ilization and disinfection guidelines, category ib cf ip&c guideline consensus: % sections in the text: iii.d. ; iv.e. animals . the cf foundation recommends that people with cf can participate in animal-assisted (“pet”) therapy in accor- dance with institutional policies. source of supporting evidence: environmental guide- line, category ii cf ip&c guideline consensus: % sections in the text: iii.c designing new inpatient facilities . the cf foundation recommends that the leadership staff of cf centers collaborate with the institutional ip&c and the planning, design, and construction departments when designing a new inpatient unit to ensure a design that a. provides an adequate number of single-patient rooms to care for people with cf b. includes a provision for people with cf who require pos- sible airborne precautions c. provides access to exercise during hospitalization (eg, ad- equate space for exercise equipment) d. provides adequate space for personal protective equipment (eg, masks, gowns, and gloves) at the point of use cf ip&c guideline consensus: % sections in the text: i.c. ; ii.d; iv.d. ; iv.d. ; iv.g; vi v. recommendations for nonhealthcare settings in addition to the core recommendations, the cf foundation recommends implementing the following recommendations in nonhealthcare settings. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nfe cti o n c ont ro l a n d h o sp ita l e p idem i olo gy a u gus t , v o l. , n o . s families with more than person with cf . the cf foundation recommends that it is preferable that people with cf who live in the same household perform airway clearance with only person with cf in the room during treatment. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: ii; ii.c; ii.d; ii.e events and activities . the cf foundation recommends against cf-specific camps or cf-specific educational retreats for groups of people with cf. only individual with cf should attend any camp or educational retreat unless they live in the same household. however, family members who do not have cf may attend educational retreats. people with cf are encouraged to par- ticipate in camps and sports with non-cf individuals. source of supporting evidence: cf ip&c guideline, category ib cf ip&c guideline consensus: % sections in the text: ii; iii.a; iv.i. . people with cf and their parents or legal guardians are not obligated to disclose the diagnosis of cf or the results of respiratory tract cultures to school or day care personnel. however, the cf foundation recommends disclosure so that school or day care personnel can be made aware of the im- portance of ip&c principles and practices for the protection of students with cf and can make the recommended accom- modations. such information must be maintained as confi- dential medical information unless the person with cf and/ or parent or legal guardian choose to make this information known. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: ii; iii.a; iv.i. . the cf foundation recommends that people with cf attending the same day care and/or school should not be in the same room at the same time unless they live in the same household. the cf foundation recommends education of day care/school personnel on the principles of ip&c for cf so they can work with people with cf and/or parents or legal guardians to develop strategies to minimize contact between people with cf (eg, assignment to separate classrooms and separation during other scheduled common activities, in- cluding lunch, physical education, and recess). source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: iv.i. . the cf foundation recommends that only person with cf attend cf foundation–sponsored, healthcare-spon- sored, or cf center–sponsored indoor events (eg, cf edu- cation days) unless they live in the same household, to reduce the risk of person-to-person transmission of cf pathogens. cf ip&c guideline consensus: % sections in the text: ii; iii.a; iv.i. . the cf foundation recommends developing and uti- lizing alternative cf education programs, (eg, videotapes, video conferencing, cd-rom web-based learning, and apps) that do not require face-to-face meetings among people with cf. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: iv.b; iv.i. ; iv.i. ; vi . the cf foundation recommends that people with cf can attend cf foundation–sponsored, healthcare-sponsored, or cf center–sponsored outdoor events (eg, great strides) providing they maintain a distance of at least feet ( meters) from others with cf. cf ip&c guideline consensus: % sections in the text: ii; iii.a; iv.i. mrsa . the cf foundation recommends that people with cf should avoid direct contact with people with skin and soft- tissue infections caused by mrsa unless wounds are covered, hand hygiene is performed frequently, personal items (eg, towels) are not shared, sports equipment is cleaned between use, and cleaning protocols for environmental surfaces are established to reduce the risk of mrsa transmission. source of supporting evidence: cdc guidance (http:// www.cdc.gov/mrsa/prevent/personal.html) cf ip&c guideline consensus: % sections in the text: iii.b. . the cf foundation recommends that people with cf and respiratory cultures positive for mrsa should not be restricted from contact with people without cf in congregate settings (eg, sports teams, classrooms, and the workplace) if the person with cf performs appropriate hand and respi- ratory hygiene. source of supporting evidence: cdc guidance (http:// www.cdc.gov/mrsa/prevent/personal.html) cf ip&c guideline consensus: % sections in the text: iii.a. ; iii.b. nebulizers: cleaning and disinfecting . the cf foundation recommends that the following steps be performed for nebulizers used in the home as soon as possible after each use: downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. http://www.cdc.gov/mrsa/prevent/personal.html http://www.cdc.gov/mrsa/prevent/personal.html http://www.cdc.gov/mrsa/prevent/personal.html http://www.cdc.gov/mrsa/prevent/personal.html https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s a. clean the nebulizer parts with dish detergent soap and water b. disinfect the nebulizer parts using one of the following methods: heat methods: a. place in boiling water and boil for minutes b. place in a microwave-safe receptacle submerged in water and microwave for minutes c. use a dishwasher if the water is more than or equal to �c or �f for minutes d. use an electric steam sterilizer cold methods: a. soak in % isopropyl alcohol for minutes b. soak in % hydrogen peroxide for minutes i. rinse off the cold-method disinfectant using sterile wa- ter, not tap water; the final rinse must be with sterile or filtered (less than or equal to . -micron filter) water ii. air dry the nebulizer parts before storage source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: iii.d. ; iv.e. . the cf foundation recommends that nebulizers used in the home should not be disinfected with acetic acid (vin- egar), bleach solutions, or benzalkonium chloride (eg, “con- trol iii”). cf ip&c guideline consensus: % sections in the text: iv.e. leisure activities . the cf foundation recommends that people with cf should limit prolonged and/or repeated exposure to activities that generate dust from soil and organic matter (eg, gardening and lawn mowing) to decrease exposure to potential soilborne pathogens (eg, burkholderia spp. and aspergillus spp.). cf ip&c guideline consensus: % sections in the text: iv.d. . the cf foundation recommends that people with cf should avoid exposure to construction and renovation activ- ities that generate dust to decrease exposure to potential path- ogens (eg, aspergillus spp.). cf ip&c guideline consensus: % sections in the text: iii.d. ; iii.d. . the cf foundation recommends that people with cf can swim in pools or water parks with adequate disinfection (eg, chlorination). cf ip&c guideline consensus: % sections in the text: iii.d. . the cf foundation recommends that people with cf avoid activities in hot tubs, whirlpool spas, and stagnant water. cf ip&c guideline consensus: % sections in the text: iii.d. . there is insufficient evidence at the time of publication of this document for the cf foundation to recommend for or against people with cf avoiding activities in natural bodies of water that are not stagnant (eg, ocean, ponds, and hot springs). cf ip&c guideline, certainty: low sections in the text: iii.d. contact with pets or farm animals . the cf foundation recommends that people with cf perform hand hygiene after changing the litter, handling feces, cleaning and disinfecting the cages or fish tanks of their pets, or interacting with farm animals. source of supporting evidence: http://www.cdc.gov /healthypets/ cf ip&c guideline consensus: % sections in the text: iii.c . the cf foundation recommends that people with cf avoid cleaning stalls, pens, or coops. cf ip&c guideline consensus: % sections in the text: iii.c vi. recommendations for healthcare personnel with cf in addition to the core recommendations, the cf foundation recommends implementing the following recommendations for healthcare personnel with cf. . the cf foundation recommends that healthcare per- sonnel with cf should not provide care for other people with cf. cf ip&c guideline consensus: % sections in the text: iii.a; v . the cf foundation recommends that people with cf interested in a career in healthcare receive counseling from their cf care team regarding specialty areas wherein job duties minimize the risk of transmission or acquisition of potential pathogens. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: iii; v . the cf foundation recommends that healthcare per- sonnel with cf consider informing their employers’ work- force health and safety department about their diagnosis of cf to ensure that job duties are assigned and care practices downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. http://www.cdc.gov/healthypets/ http://www.cdc.gov/healthypets/ https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h o sp ita l e p ide mi ol ogy a u gu st , v o l. , n o. s are adopted that minimize the risk of acquisition or trans- mission of potential pathogens. this disclosure is legally re- quired to be kept confidential. cf ip&c guideline consensus: % sections in the text: v . the cf foundation recommends that when it is known that a healthcare provider with or without cf is infected/ colonized with mrsa, work assignments should be made according to local hospital policy. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: v . the cf foundation recommends that healthcare per- sonnel with cf be assigned to care for patients without cf on a case-by-case basis, considering health- and behavior- related factors, such as a. frequency and severity of coughing episodes, quantity of sputum production during these episodes, and ability to contain respiratory tract secretions; b. ability to use barrier precautions and adhere to ip&c guidelines, centers for medicare & medicaid services, hicpac, and cdc guidelines; and c. risk of transmission of pathogens by healthcare personnel with cf in the context of specific job duties. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: iii.a; v vii. recommendations for psychosocial and medical impact of ip&c the cf foundation recommends implementing the following recommendations to reduce the psychosocial impact of ip&c for people with cf, their families, and healthcare personnel. . the cf foundation recommends educating, when ap- propriate, friends, teachers, employers, and coworkers about the rationale for the ip&c recommendations. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: iv.b; vi . the cf foundation recommends identifying cf center– specific concerns for the potential psychosocial impact of the ip&c guideline for people with cf in the hospital, clinic, community, school, and home and strategies, including an available counselor, to minimize the negative impact. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: vi . the cf foundation recommends that the cf care team inform people with cf and their parents or legal guardians of their microbiologic status. people with cf and their parents or legal guardians will then determine whom they will inform. source of supporting evidence: ip&c guideline, category ii ip&c guideline consensus: % sections in the text: iv.i. ; iv.i. ; vi . the cf foundation recommends collaboration with the child life staff to ensure individualized programs consis- tent with the recommended ip&c guidelines. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: iv.b; vi . the cf foundation recommends making accommo- dations (eg, providing entertainment, enhancing communi- cation with the outside world, facilitating visits with non-cf individuals, and adapting child life programs) to relieve the psychosocial stress of inpatient and outpatient ip&c guide- lines without placing people with cf at risk for transmission or acquisition of pathogens. source of supporting evidence: cf ip&c guideline, category ii cf ip&c guideline consensus: % sections in the text: vi b a c k g r o u n d i n f o r m a t i o n s u p p o r t i n g t h e r e c o m m e n d a t i o n s i. cf microbiology and molecular typing i.a. general microbiology methods the infection control guideline for cf provided de- tailed recommendations for obtaining and processing cf re- spiratory tract specimens that were endorsed by the american society for microbiology and the national committee for clinical laboratory standards (now the clinical and labo- ratory standards institute). others have supported these rec- ommendations. , furthermore, review of the protocols of clinical microbiology laboratories in the united states ob- tained in – demonstrated excellent adherence to the infection control guideline for cf recommendations for processing cf specimens. thus, the majority of clinical laboratories processing the cf respiratory tract specimens have standardized their techniques, use appropriate selective media and prolonged incubation, and identify gram-negative organisms to the species level. the cf foundation recom- mends continued use of the methods described in the infection control guideline for cf for when to perform re- spiratory tract cultures, how to transport specimens, and the use of selective media. a detailed description of processing lower respiratory tract specimens for ntm will be provided downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s in a joint cf foundation and ecfs guideline (b.c.m., written personal communication, april ). the committee reviewed the following microbiology topics but agreed not to develop revised recommendations in the updated guidelines: ( ) the relative merits of different types of respiratory tract specimens. the positive and negative pre- dictive values of deep throat specimens or oropharyngeal specimens for the lower airway specimens have been studied with varying results, presumably due to the different patient populations and pathogens studied. the yield of induced sputum relative to upper airway specimens has also been assessed in research settings, and induced sputum generally yields more potential pathogens. the infection control guideline for cf recommendations for processing all types of respiratory tract specimens (throat, sputum, or bronchoal- veloar lavage) continues to be appropriate. ( ) the relative merits of different frequencies of respiratory tract cultures. cultures of the respiratory tract can detect new pathogens, guide therapy, monitor the success of eradication strategies, and distinguish transient versus persistent colonization/in- fection. however, more frequent surveillance is associated with increased incidence and prevalence of cf pathogens. the infection control guideline for cf recommen- dation for quarterly cultures—or more frequently if clinically indicated—continues to be supported by published studies. ( ) the role played by matrix-assisted laser desorption ion- ization time-of-flight (maldi-tof) mass spectrometry platforms for identification of gram-negative bacilli from patients with cf. several studies have found an advantage of this technology for rapid identification of pathogens that require many days using traditional phenotypic and genomic sequencing methods. - however, this technology is not widely available in the united states. ( ) the relative merits of susceptibility testing to guide treatment of cf pathogens. recent studies have questioned the clinical utility of performing routine susceptibility testing. , nonetheless, antimicrobial susceptibility can distinguish methicillin-susceptible s. aureus (mssa) from mrsa, identify unique multidrug-resistance patterns, and has been crucial for epidemiologic investiga- tions. for example, cf clinicians were alerted to the trans- mission of epidemic strains of p. aeruginosa due to the emergence of ceftazidime-resistant, colistin-resistant, or multidrug-resistant strains. , thus, susceptibility testing is still recommended as per the infection control guide- line for cf. ( ) clinical implications of the cf microbiome. the reader is referred to several recent studies for information on this increasingly important topic. - i.b. molecular typing methodologies overview while earlier methods for typing bacteria from the respiratory tract of individuals with cf for epidemiologic purposes were based primarily on comparison of phenotypic (physical) fea- tures, molecular methods using analysis of the genetic content of bacteria are now preferred. compared with phenotypic methods, genotyping methods are more reproducible and provide greater discriminatory power in differentiating epi- demiologically related strains from unrelated strains. further attributes of the ideal genotyping system include ease of use, low cost, and unambiguous interpretation. - random-amplified polymorphic dna (rapd) rapd typing is based on pcr amplification of random sec- tions of the bacterial genome. the amplified dna segments are separated by gel electrophoresis, and the resulting banding pattern is compared with that of other bacteria visually or by means of computer-imaging software. bacterial isolates with a high level of similarity in rapd pattern are considered indistinguishable or highly likely to be the same strain. repetitive-element pcr (rep-pcr) another pcr-based genotyping method relies on the ampli- fication of certain repetitive genetic elements found within the bacterial genome. a frequently used target for such rep- pcr typing is a genetic element referred to as the box a r element (so-called box-pcr typing). as with rapd, the dna banding patterns of bacterial isolates revealed by rep- pcr are compared; those with a highly similar pattern are considered highly likely to be related. pulsed-field gel electrophoresis (pfge) pfge has been a mainstay of bacterial genotyping for the past decades. pfge evaluates genetic polymorphisms within the entire bacterial genome by macrorestriction, a technique that extracts genomic dna from bacterial cells and then cleaves the dna into large fragments using a restriction en- zyme. these dna fragments are separated by size using gel electrophoresis. the resulting banding pattern is compared among bacterial isolates; those with highly similar patterns are considered highly likely to be related. multilocus sequence typing (mlst) mlst has become a preferred method for bacterial genotyp- ing. this method measures dna sequence variations in a set of housekeeping genes that are present in all strains of a given species and characterizes strains by their unique allelic profiles. for each housekeeping gene of interest, the different sequences found within a bacterial species are designated as distinct alleles. for each isolate, the alleles identified for each of the housekeeping genes define the allelic profile or se- quence type (st). compared with pfge and pcr-based ge- notyping methods, mlst has distinct advantages, as it yields unambiguous, reproducible results that can be compared be- tween laboratories. public-access st databases make mlst particularly well suited to global studies of the epidemiology of cf pathogens. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h osp ita l e p ide mi ol ogy a u gu st , v o l. , n o. s figure . age-specific prevalences of respiratory organisms, . age-specific prevalences of pseudomonas aeruginosa, methicillin-resistant staphylococcus aureus (mrsa), haemophilus influenzae, achromobacter xylosoxidans, burkholderia cepacia complex, stenotrophomonas maltophilia, staphylococcus aureus, and multidrug-resistant pseudomonas aeruginosa (mdr-pa) among patients with cystic fibrosis in the united states in are shown. these data reflect an analysis of the us cystic fibrosis foundation patient registry. whole-genome sequencing most recently, whole-genome sequencing has been used to help define the epidemiology of bacterial pathogens for which conventional molecular typing may not have the resolution to accurately analyze population structure. notably, whole- genome sequencing was used to assess transmission of ntm between individuals with and without cf. , the slow mu- tation rate of ntm is another reason for the need for whole- genome sequencing methods with these pathogens. summary several molecular typing strategies have been developed that have been instrumental in documenting shared strains of cf pathogens and identifying potential environmental sources, as described below. it is likely that whole-genome sequencing will become more widely used to delineate the epidemiology of some pathogens, such as ntm and mrsa, while other strategies, such as mlst, will continue to be used for burk- holderia and pseudomonas spp. national cf organizations in canada, the united states, and several countries in the eu- ropean union have established research and referral labo- ratories for molecular typing of cf bacterial isolates that interact with one another through international networks, such as the international burkholderia cepacia working group. such interactions help determine whether bacterial strains are found in more than country, and thanks to the efforts of these laboratories, our understanding of the mo- lecular epidemiology of cf pathogens has greatly expanded, as described further below. in addition to its use in outbreak investigations, molecular typing is a critical tool in active surveillance programs and in monitoring the success of ip&c strategies. it should be emphasized, however, that molecular typing is best used to augment conventional shoe-leather epidemiology, since most genotyping methods are not performed routinely in diag- nostic clinical microbiology laboratories and active surveil- lance using molecular methods is not a component of routine cf care in the united states. i.c. epidemiology of cf pathogens i.c. . overview the cf foundation patient registry (cffpr) is an invaluable source of data to further our understanding of the epide- miology of cf pathogens. the cffpr has improved data collection for cf microbiology by creating numerous drop- down menus for both common and emerging pathogens. the cf foundation provides annual data on the epidemiology of cf pathogens, as shown for in figure . s. aureus is the most common cf pathogen in the first decades of life. while mssa is more prevalent than mrsa, the prevalence of mrsa is highest in – -year-olds. p. aeruginosa is de- tected in more than % of young infants, and nearly % of adults are infected with this pathogen. the prevalence of multidrug-resistant gram-negative organisms, including sten- otrophomonas maltophilia, achromobacter xylosoxidans, and b. cepacia complex, increases with age. the cf foundation analyzed the changing prevalence of cf pathogens from to , as shown in figure . several pathogens, including mrsa, s. aureus, and s. mal- tophilia, have increased during this time. the explanation for these increases is unknown. it is likely that improved micro- biology laboratory processing and data collection have im- proved our ability to detect and report these microorganisms, but increasing longevity, antimicrobial selective pressure, and potentially person-to-person transmission may also contrib- ute to these findings. in contrast, the prevalence of p. aeru- ginosa and b. cepacia complex has decreased, which suggests downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s figure . respiratory organism prevalences, – . prevalences of staphylococcus aureus, pseudomonas aeruginosa, methicillin-resistant staphylococcus aureus (mrsa), stenotrophomonas maltophilia, and burkholderia cepacia complex among patients with cystic fibrosis in the united states of all ages from to are shown. these data reflect an analysis of the us cystic fibrosis foundation patient registry. table . burkholderia cepacia complex species name former genomovar designation year identified and/or named reference(s) b. cepacia i , , b. multivorans ii b. cenocepacia iii , , b. stabilis iv , , b. vietnamiensis v , , b. dolosa vi , b. ambifaria vii b. anthina viii b. pyrrocinia ix b. ubonensis … , , b. latens … b. diffusa … b. arboris … b. seminalis … b. metallica … b. contaminans … b. lata … b. pseudomultivorans … that treatment paradigms, including early eradication strat- egies for p. aeruginosa and improved ip&c, may have influ- enced the epidemiology of these cf pathogens. the following sections provide a brief overview of the epidemiology of se- lected cf pathogens. potential sources of these pathogens, including person-to-person transmission, are discussed in section iii. i.c. . burkholderia spp. at present, the b. cepacia complex consists of distinct yet closely related species (table ). - the frequency of detec- tion of these species in people with cf varies considerably, although burkholderia cenocepacia and burkholderia multi- vorans are most common. , burkholderia gladioli is the third most frequently isolated burkholderia species among cf pa- tients in the united states. however, while b. gladioli are phenotypically quite similar to the species in the b. cepacia complex, it is not a member of the b. cepacia complex. i.c. . other gram-negative species the burkholderia reference laboratory and repository at the university of michigan has expanded our understanding of the epidemiology of less commonly isolated gram-negative organisms in cf, including ralstonia spp. (eg, r. picketti and r. paucula) and pandoraea spp. readers are referred to sev- eral excellent reviews that have highlighted the recent epi- demiology of cf pathogens. , , i.c. . small colony variant (scv) s. aureus in the past several years, there has been increasing interest in the clinical and therapeutic implications of scvs of s. aureus in cf. s. aureus persists in the airways of people with cf for years and can develop a hypermutator phenotype that promotes adaptive changes, including scvs, thought to fa- cilitate survival of this organism within the cf airway. , scvs are detected visually on laboratory agar plates and ex- hibit slower growth rates due to metabolic defects (eg, thy- midine biosynthesis deficiency ), and they therefore require special susceptibility testing. however, the testing method has not been standardized by the clinical and laboratory stan- dards institute. several potential clinical implications of scv strains have been proposed. scv strains of s. aureus are thought to have increased resistance to the innate immune system and in- creased resistance to antibiotics. , , in vitro, scvs have an increased ability to infect normal and cf airway epithelial cells. in non-cf patients, scv s. aureus are associated with downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h o sp ita l e p ide mi ol ogy a u gu st , v o l. , n o . s chronic or recurrent infections, such as endocarditis and osteomyelitis. , scv strains have been isolated from % to % of indi- viduals with cf who are infected with s. aureus. - scv s. aureus are associated with older age, coinfection with p. aeru- ginosa, lower lung function, and treatment with antibiotics, specifically trimethoprim-sulfamethosoxazole. in vitro, scv strains can be induced by exoproducts expressed by p. aeruginosa. recently, a causal relationship was suggested between the emergence of scv s. aureus and a decline in lung function. in a cf center in the united states, children with cf, of whom had scv s. aureus, were followed for an average of . years. those with scv strains had lower lung function at the beginning and end of the study, but they had a similar rate of pulmonary exacerbations. notably, % of the chil- dren with scv strains did not have normal-colony s. aureus strains, which suggests that these children would not have been identified as infected with s. aureus had scv strains not been sought. in addition, pairs of subjects had the same scv strains, suggesting possible transmission of scvs be- tween children with cf. currently, it is unknown how many clinical laboratories have instituted methods to detect scv strains of s. aureus, and there are no standardized methods for detection and susceptibility testing. additional studies are needed to further describe the epidemiology of scv s. aureus as well as the treatment and ip&c implications for cf. furthermore, scvs of other bacteria, including pseudomonas, , stenotropho- monas, and b. cepacia complex, have been described in people with cf. i.c. . nontuberculous mycobacteria among the ntm are several opportunistic human pathogens, including mycobacterium intracellulare and the species in the mycobacterium avium complex (mac; m. avium subsp. av- ium, m. avium subsp. silvaticum, and m. avium subsp. par- atuberculosis). the rapid-growing ntm species include those in the m. abscessus complex. although the taxonomy of the m. abscessus complex was uncertain at the time of publication, currently closely related subspecies are de- scribed: m. abscessus subsp. abscessus, m. abscessus subsp. mas- siliense, and m. abscessus subsp. bolletii. , the prevalence of ntm in people with cf varies between countries and centers and appears to be increasing. the most common species of ntm seen in individuals with cf are mac and m. abscessus. although mac is more prevalent in north america, m. abscessus is more common in europe and israel. - in france, mac was detected in older patients with less severe disease. thus, it appears that mac and m. abscessus may target different subpopulations of people with cf. i.c. . aspergillus spp. people with cf are at increased risk for colonization with filamentous fungi. the most frequently identified filamentous fungi are aspergillus fumigatus, scedosporium apiospermum, and aspergillus terreus. less common fungi include asper- gillus flavus, aspergillus nidulans, exophilia dermatitidis, sce- dosporium prolificans, penicillium emersonii, and acrophialo- phora fusispora. people with cf are at risk for allergic bronchopulmonary aspergillosis (abpa), but many do not fulfill the clinical criteria for a diagnosis of abpa. - fur- thermore, criteria for initiation of antifungal therapy in in- dividuals with positive aspergillus cultures are incompletely defined. in addition, invasive infection due to aspergillus may occur, especially after lung transplantation. i.d. surveillance strategies for cf pathogens routine real-time surveillance for epidemiologically signifi- cant microorganisms is recommended in acute care settings to understand endemic rates and to identify outbreaks as soon as possible. regulatory requirements from state health de- partments and priorities established by local ip&c depart- ments determine specific surveillance strategies. local clinical microbiology laboratories are crucial partners to ensure ac- curate and meaningful data. examples of pathogens for which surveillance is performed in hospitalized patients without cf, under defined circumstances, include mrsa, vancomycin- resistant enterococci (vre), gram-negative bacilli resistant to carbapenem agents (cre), and clostridium difficile. routine surveillance for cf pathogens at individual cf centers can be used to track and trend the incidence and prevalence of specific microorganisms. surveillance can assist centers in measuring the efficacy of both ip&c measures and other treatment strategies, such as early eradication. as de- scribed above, molecular typing is an invaluable tool for as- sessing potential patient-to-patient transmission, but it is not yet available routinely. surveillance data for particular species can be generated by local clinical microbiology laboratories or by the cffpr. the cf community is continually challenged by the chang- ing epidemiology of cf pathogens. not only have new path- ogens emerged, but the epidemiology of classic cf pathogens has changed thanks to new treatment strategies (eg, early eradication of p. aeruginosa) and improved microbiologic de- tection and identification. to remain vigilant, surveillance strategies that assess the impact of therapeutic interventions, identify potential outbreaks, and monitor the success of ip&c practices must be integrated into cf care. ii. routes of transmission of cf pathogens ii.a. contact and droplet transmission several routes of transmission have been described for cf pathogens, including direct contact with infectious respira- downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s table . modes of transmission of potential pathogens in cystic fibrosis type of transmission mode of transmission examples of respiratory tract pathogens source contact transmission direct or indirect contact with infectious secretions mrsa pseudomonas aeruginosa burkholderia spp. respiratory syncytial virus hands of healthcare workers shared toys contaminated respiratory therapy equipment or surfaces droplet transmission infectious droplets containing pathogens mrsa p. aeruginosa burkholderia spp. influenza virus rhinovirus adenovirus mycoplasma bordetella pertussis infectious droplets (general size, . mm; dis- tance, – feet [ – meters]) travel from respiratory tract of infected person to nasal mucosa, conjunctiva, or mouth of suscepti- ble person during coughing, sneezing, or chest physiotherapy airborne transmission droplet nuclei arising from desiccation of droplets containing pathogens mycobacterium tuberculosis varicella zoster virus measles virus sars-cov airborne dissemination of droplet nuclei in respirable range that remain infectious over time and distance; may occur for some pathogens that are usually transmitted by the droplet route under unusual circumstances note. mrsa, methicillin-resistant staphylococcus aureus; sars-cov, severe acute respiratory syndrome coronavirus. tory secretions (eg, by kissing), indirect contact with an in- termediate object contaminated with infectious respiratory secretions (eg, hands, environmental surfaces, or shared equipment), and infectious droplets from the respiratory tract that can travel in the air a distance of – feet ( – meters). these routes of transmission are summarized in table . bac- terial and viral pathogens can remain viable on hands or inanimate surfaces for minutes, hours, or even days. , since publication of the infection control guideline for cf, several studies conducted in people with and without cf who are infected with viral or bacterial pathogens have expanded our understanding of droplet transmission and now challenge the -foot rule. these studies include epidemiologic data collected during outbreaks of influenza , and sars in non-cf individuals, - experimental and observational studies performed in people with cf, - and studies of the dynamics of infectious aerosols. , , ii.b. classic view of droplet transmission in the classic view of droplet transmission, infectious respi- ratory droplets (more than mm in diameter) are expelled by one person onto the mucous membranes of the nose, mouth, or conjunctivae of another susceptible person within feet. infectious droplets are generated by coughing, sneez- ing, or talking or during such procedures as suctioning, in- tubation, chest physiotherapy, or pulmonary function testing. infectious droplets remain suspended in the air for a short time, generally minutes, and can contaminate horizontal en- vironmental surfaces, equipment, and the hands of patients and healthcare personnel. droplets are contrasted with much smaller droplet nuclei (less than . mm in diameter), which can travel farther, remain suspended in the air for longer periods of time, do not require face-to-face contact for trans- mission, and are directly inhaled into the respiratory tract. thus, pathogens transmitted by droplet nuclei do not require individuals to be in close proximity but do require them to share common air space. ii.c. emerging view of droplet transmission new data have challenged the classic view of droplet trans- mission. infectious droplets containing influenza virus and sars-cov traveled – feet. , , , aerosols of droplet nuclei from patients infected with influenza can be generated during intubation and suctioning. droplet size and distance traveled can be affected by ( ) environmental factors (eg, humidity, temperature, air currents, and number of air changes per hour in a room), ( ) agent factors (eg, infectious load, transferability, survivability, infectivity, and contagiousness), and ( ) host fac- tors (eg, susceptibility and behavior). , in cf, several recent studies have explored the dynamics of droplet transmission. in an experimental model, subjects with cf infected with p. aeruginosa coughed into a chamber, and both droplets and smaller droplet nuclei containing viable organisms were collected as far as feet from the subjects. cf pathogens were recovered from the air collected feet from cf subjects who were performing pfts, and p. aeru- ginosa was recovered from the air in hospital rooms, rooms after chest physiotherapy was performed, the hospital cor- downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nf ect i on c ont ro l a n d h o sp ita l e p idem i olo gy a u gu st , v o l. , n o . s table . relative frequency of shared strains of different cystic fibrosis pathogens species frequencya reference(s) pseudomonas aeruginosa ��� , , , – burkholderia spp. ��� , – methicillin-susceptible staphylococcus aureus � , methicillin-resistant s. aureus �� , stenotrophomonas maltophilia � , achromobacter xylosoxidans � – mycobacterium avium complex none described mycobacterium abscessus subsp. massiliense � , , a frequency (� to ���) is based on the relative number of published reports. ridor, and a cf clinic. , factors associated with generating infectious droplets are unknown, as exacerbations, sick versus well cf clinic visits, and age were not predictive of the rate of recovery from air samples. , ii.d. potential role of droplet nuclei most recently, the potential for person-to-person droplet and/ or droplet nuclei transmission of m. abscessus subsp. massi- liense has been suggested. , transmission in one center was halted by simultaneous implementation of multiple ip&c strategies, including separation of people with cf infected with this pathogen, increased microbiologic surveillance, en- hanced environmental cleaning, mask use by individuals with cf, and the use of negative pressure rooms among adults with cf. (see section iii.a. for a more detailed description of ntm transmission.) ii.e. paradigm for transmission of respiratory pathogens in an effort to explain observations made during the sars epidemics, the following paradigm was proposed to describe the potential for transmission of respiratory tract pathogens by both infectious droplets and droplet nuclei un- der different conditions: ( ) obligate transmission is that which occurs under natural conditions (eg, transmission of m. tuberculosis by droplet nuclei). ( ) preferential transmis- sion is that which occurs when one route is the usual route but another route has been described; for example, trans- mission of the measles virus (rubeola) usually occurs by in- halation of droplet nuclei that are deposited in distal airways, but infectious droplets may also transmit the measles virus. ( ) opportunistic transmission is that which can occur when a pathogen usually transmitted by droplets can be transmitted by droplet nuclei (eg, influenza transmitted by aerosols of droplet nuclei) under unusual environmental conditions, such as intubation. future studies may help define the ap- plicability of this paradigm to cf pathogens. summary in summary, cf pathogens can be transmitted by direct or indirect contact with infectious secretions, objects contami- nated with infectious secretions, or infectious droplets. recent data suggest that infectious droplets may travel as far as feet ( meters) from individuals with cf. while detection of infectious droplets is not confirmatory of patient-to-patient transmission, it is highly suggestive of the potential for such transmission. the potential for people with cf to generate droplet nuclei has been demonstrated in experimental mod- els, but the relevance of these observations for transmission, including that of m. abscessus subsp. massiliense, has not been established and should be studied. iii. potential sources of cf pathogens iii.a. person-to-person transmission among people with cf the source of cf pathogens is often unknown, and many individuals with cf are infected with unique strains of p. aeruginosa or burkholderia spp. however, the molecular tools described above have expanded the evidence that people with cf can acquire cf pathogens from others with cf in both healthcare and nonhealthcare settings. these are the primary transmission and acquisition events targeted by the rec- ommendations in this guideline. the relative frequency of shared strains of different cf pathogens is shown in table . , , , , , - iii.a. . burkholderia spp. b. cenocepacia. several methods have been used to geno- type burkholderia to define the epidemiology of infections in people with cf. , - in the late s, genotyping studies identified common strains in multiple individuals receiving care at the same cf centers, suggesting person-to-person spread. more compelling evidence soon followed. trans- mission of b. cepacia complex was described at a cf edu- cational retreat and among people with cf attending sum- mer camps. outbreaks were also reported within cf centers. among so-called epidemic strains, the et (electrophor- etic type ) strain was prevalent in eastern canada and the united kingdom. , the midwest strain and the phdc (philadelphia–washington, dc) strain were identified in peo- ple with cf in the midwest and mid-atlantic regions of the united states, respectively. - the st strain (rapd type ) was identified in people with cf in western canada, and the cz strain (now referred to as st ) was identified in downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s most individuals infected with burkholderia at the prague cf center in the czech republic. - other b. cenocepacia strains have been shared among multiple individuals with cf in various italian cf centers. , other species of b. cepacia complex. shared strains from other species in the b. cepacia complex have been reported and generally involved smaller numbers of patients. , , , a notable exception is b. dolosa strain slc , which was iden- tified in an outbreak in a us cf center and associated with deterioration in lung function and increased mortality. , the glasgow strain of b. multivorans was identified in an outbreak among people with cf in the city in the early s. , however, the majority of burkholderia-infected cf patients harbor genotypically distinct strains. b. multivorans and b. gladioli account for more than half of the burkholderia infec- tions in the united states, but it is uncommon that multiple individuals with cf share strains belonging to these species. thus, the majority of new burkholderia infections in people with cf currently involve the acquisition of strains from in- dependent sources, most likely the natural environment, as will be discussed further in section iii.d. below. , clinical impact of epidemic burkholderia spp. poor out- comes, including more rapid clinical decline, decline in lung function, and increased mortality both before and after lung transplantation , have been associated with certain strains of b. cepacia complex. outcomes from the canadian and us cf patient registries demonstrated a . -fold increase in the relative risk of death in people with cf who are infected with b. cepacia complex. , overwhelming infection (the cepacia syndrome) has been reported with species of b. cepacia com- plex other than b. cenocepacia, including b. multivorans and b. dolosa slc . both single-center and multicenter studies suggest that poor outcomes with b. cepacia complex may be related to species, and such strains as b. cenocepacia et have been associated with the worst outcomes. among lung transplant recipients infected with b. cenocepacia (n p ), b. multivorans (n p ), and b. vietnamiensis (n p ), all of the deaths occurred in those infected with b. cenocepacia. iii.a. . p. aeruginosa shared p. aeruginosa strains. early strain-typing studies demonstrated that individuals with cf infected with p. aeru- ginosa harbored distinct strains, presumably acquired from the natural environment. , , shared strains between sib- lings were well documented, - and in a report from denmark described the spread of a multidrug-resistant p. aeruginosa strain in a cf care center. in , pfge analysis of isolates recovered during an antibiotic trial identified a b- lactam-resistant strain of p. aeruginosa infecting children at a cf center in liverpool, united kingdom. other reports described shared or epidemic p. aeruginosa strains in the united kingdom and australia. , - pfge analysis of , p. aeruginosa isolates recovered from people with cf receiving care in treatment centers in the united kingdom dem- onstrated that % of those infected harbored a strain shared with at least other person with cf. the most prevalent strains accounted for more than % of the isolates examined. some strains, including the liverpool and midlands epi- demic strains, were widely distributed and identified in % and % of cf treatment centers, respectively. in melbourne, australia, a strain first detected in children with cf was subsequently identified in half of the individ- uals with cf who were infected with p. aeruginosa in syd- ney. this strain, now referred to as the australian epidemic strain (aes- ), has also been identified in brisbane. the australian epidemic strain (aes- ) is even more common in brisbane, while the australian epidemic strain (aes- ) is common in tasmania. in copenhagen, denmark, pfge and genomic dna sequence analyses identified major p. aeruginosa clones that have been common among and likely transmitted among people with cf for more than decades. in the netherlands, mlst analysis of p. aeruginosa iso- lates recovered from individuals with cf in cf centers identified strains (designated st and st ) in % and % of the patients. furthermore, % of the individ- uals studied harbored a strain also found in at least other individuals. strains common to large numbers of people with cf cared for in north america have also been described. in vancouver, canada, rapd and pfge were used to analyze p. aeruginosa isolates recovered between and from individ- uals with cf; distinct strains were identified, of which were unique to individual patients. several strains were shared by clusters of , , or individuals, and strains were shared by and individuals. more recently, in ontario, canada, mlst was used to analyze p. aeruginosa isolates re- covered from individuals with cf. the les was iden- tified in % of these individuals, while a second strain (des- ignated st ) was found in %. the route by which the les was transmitted to people with cf in canada is un- known. in the united states, the presence of epidemic p. aeruginosa strains remains uncertain, as very few genotyping studies of isolates from large numbers of people with cf have been performed. in houston, rep-pcr typing identified a multi- drug-resistant p. aeruginosa strain in ( %) of children with cf; this strain, designated houston , appears to be distinct from other epidemic p. aeruginosa strains (j.j.l., writ- ten personal communication, october ). compared with other strains, new infection with the houston strain was significantly more likely to occur in those children hos- pitalized within the days prior to infection. in addition, compared with those infected with other strains, those with the houston strain spent more days in the hospital in the year prior to acquisition. the authors found that following adoption of recommendations from the infection con- trol guideline for cf, transmission was halted. furthermore, downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h o sp ita l e p idem i ol ogy a u gu st , v o l. , n o . s p. aeruginosa strains from participants in an antibiotic trial who were cared for at cf centers in the united states were evaluated with mlst; at each center, shared strains were noted in %– % of participants, and of centers had participants with shared strains. most epidemic strains of p. aeruginosa have had a multi- drug-resistant phenotype, which facilitated their recognition. the presence of epidemic strains without an unusual or note- worthy phenotype might be difficult to detect. active sur- veillance of sufficiently large numbers of isolates is required to monitor the presence and ongoing transmission of shared strains of p. aeruginosa. such surveillance is not currently a component of routine cf care in the united states. routes of transmission and reservoirs of p. aeruginosa. the epidemiologic and microbiologic basis for epidemic p. aeruginosa strains remains poorly understood, and it is un- clear whether all epidemic p. aeruginosa strains have com- parable capacity for patient-to-patient transmission. strain differences in the production of infectious droplets or droplet nuclei that remain suspended in the air under experimental conditions may explain the differences in efficiency of trans- mission of epidemic p. aeruginosa strains. infections with a shared strain , , are highly suggestive of patient-to-patient transmission, particularly as institution of ip&c measures halted transmission. , while acquisition from a common source is also a possibility, surveillance of inpatient and outpatient settings have not detected a reservoir for shared strains. , strains that are more widely distributed (ie, found in multiple cf care centers) might suggest contact among individuals with cf from different centers or, possibly, acquisition from the natural environment, as described below in section iii.d. clinical impact of epidemic pseudomonas. the les has developed increasing antibiotic resistance, and some epi- demic strains of pseudomonas are associated with clinical de- terioration. - the les has been associated with an in- creased risk of death or lung transplantation during years of follow-up and/or decline in lung function. furthermore, those infected with the les had a worse quality of life, in- cluding worse treatment burden, physical functioning, and respiratory symptoms, compared with those individuals in- fected with nonepidemic strains. iii.a. . other gram-negative bacteria several other nonfermenting gram-negative bacteria can cause intermittent or chronic infection in people with cf. among these, s. maltophilia, achromobacter spp., ralstonia spp., cupriavidus spp., and pandoraea spp. are the most common. , s. maltophilia. in the united states, ( %) of in- dividuals with cf infected with s. maltophilia harbored ge- netically distinct strains, and clusters (each of individuals) were detected, suggesting either patient-to-patient spread or acquisition from a common environmental source. among s. maltophilia isolates obtained from a multicenter an- tibiotic trial conducted in the united states, only instances of shared strains were found. more recently, isolates recovered from individuals with cf were studied, and distinct strains were identified that were each shared by or patients. thus, while there is some evidence for shared strains of s. maltophilia and possible patient-to-patient trans- mission, most infections in people with cf appear to result from independent acquisition, most likely from non-health- care-associated environmental sources or as a result of an- timicrobial selective pressure. a. xylosoxidans. a. xylosoxidans is an opportunistic pathogen that causes healthcare-associated infections, in- cluding bacteremia, meningitis, pneumonia, endocarditis, peritonitis, osteomyelitis, urinary tract infection, and en- dophthalmitis, in vulnerable hosts, including neonates, burn victims, and other immunocompromised patients. - among individuals with cf in the united states in- fected with achromobacter, % were infected with a. xylos- oxidans, and . % were infected with achromobacter rhulandii. in small single-center studies, achromobacter- infected individuals each harbored genotypically distinct strains. , however, there is some evidence that achro- mobacter spp. are shared by people with cf. a cf center in the united states reported that ( %) of achromobacter- infected individuals harbored the same strain of a. xylosox- idans. in the same multicenter antibiotic trial described above, achromobacter isolates were analyzed, and in- stances of shared strains ( individuals each) were detected. in athens, greece, of individuals with cf infected with the same strain of a. xylosoxidans were close social contacts. in a multicenter study conducted in belgium, clusters of a. xylosoxidans strains were identified (one consisted of individuals, and the other consisted of individuals). thus, there is some evidence of shared strains of a. xylos- oxidans and a suggestion of possible patient-to-patient trans- mission. ralstonia, cupriavidus, and pandoraea spp. several of the species in the genus ralstonia, including r. pickettii, r. mannitolilytica, and r. insidiosa, have been recovered from people with cf. in the united states, ( %) of in- dividuals infected with ralstonia species had r. mannitoli- lytica; had r. pickettii, had r. gilardii, had r. taiwanensis, and had a ralstonia species that could not be classified. several of the species included in the genus cupriavidus, including c. pauculus, c. gilardii, c. respiraculi, and c. taiwanensis, have also been recovered from people with cf. among isolates obtained in the united states from to , ralstonia and cupriavidus species were recovered from and cf patients, respectively. r. mannitolilytica accounted for % of ralstonia species, while c. respiraculi was the most common ( %) cupriavidus species identified. genotyping analyses of these isolates have not identified a strain common to more than person with cf (j.j.l., un- published data, october ). downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s the genus pandoraea, first described in , is currently comprised of species, all of which have been recovered from persons with cf. , among the individuals with cf in the united states with pandoraea species recovered between and , p. apista, p. pnomenusa, and p. sputorum ac- counted for approximately equal proportions of isolates. in denmark, a p. apista strain spread among children with cf attending a winter camp, and most subsequently experienced a significant deterioration in lung function. iii.a. . s. aureus shared mssa strains. s. aureus is normal skin flora and commonly colonizes the anterior nares. in – , the an- terior nares of approximately % of children in the united states without cf aged – years were colonized with s. au- reus, and s. aureus can also be recovered from % of oro- pharyngeal swabs of healthy children years of age and youn- ger. in germany, the anterior nares of individuals with cf aged – years and age-matched non-cf controls as well as family members of children with cf and family members of children without cf were studied to compare the frequency of s. aureus colonization. a signifi- cantly greater prevalence of nasal carriage of s. aureus ( %) was found among those with cf who had not been treated with antistaphylococcal antibiotics during the weeks preced- ing culture, compared with those recently treated ( %) or those without cf ( %). the proportion of family members colonized with s. aureus was similar among cf ( %) and non-cf ( %) families. pfge analyses indicated that colonized individuals within the same family often shared the same s. aureus strain, indicating that s. aureus can be transmitted within families. the genome types found in people with cf and their families were also noted in the community. colonization does not usually have consequences, but it is a risk factor for subsequent disease in people with and without cf; isolates colonizing the anterior nares and disease-pro- ducing isolates typically have the identical genotype. - in people with cf, airway infection may be intermittent or chronic. , - chronic infection of the airways with the same clone can persist for several years. , , shared strains of s. aureus among individuals with cf are well documented. four typing methods were used to compare mssa strains recovered from individuals with cf before and after attendance at a -week summer camp. four of patients acquired a strain noted in another camper at the start of camp, consistent with patient-to-patient transmission. in st. louis, episodes of transmission of mssa between siblings with cf in which transmission to the younger siblings resulted in considerable morbidity have also been reported. shared mrsa strains. in – , the anterior nares of approximately . % of children in the united states with- out cf aged – years were colonized with mrsa. in australia, healthcare-associated transmission of mrsa among people with cf and the spread of mrsa from patients without cf to individuals with cf hospitalized in the same ward at the same time have been reported. in leeds, united kingdom, individuals with cf infected with mrsa spent more time in the hospital in the year prior to initial isolation of mrsa than age- and sex-matched uninfected control sub- jects with cf ( . vs . days; p ! . ). the molecular epidemiology of mrsa has also been stud- ied to ( ) understand the relative contribution of community versus traditional healthcare-associated clones, ( ) compare the types of mrsa strains in cf versus non-cf individuals, and ( ) assess the frequency of shared strains. in dallas and chicago, % of strains from children without cf were staph- ylococcal chromosomal cassette mec (sccmec) type iv (so- called community-associated strains), while % of mrsa strains from children with cf were sccmec type ii (so-called traditional healthcare-associated strains); mrsa strains more recently acquired in children with cf were more likely to be sccmec type iv. in addition, the distribution of mlst clonal complexes (ccs), which are closely associated with sccmec types, was different among cf versus non-cf iso- lates. among cf isolates, % were cc , % were cc , and % were cc , whereas among non-cf isolates, % were cc , % were cc , and % were cc . while the reasons for differences in the molecular epidemiology of mrsa strains between non-cf versus cf individuals are unclear, the presence of common strains in the cf population suggest patient-to-patient transmission and/or potential virulence factors that facilitate colonization and infection in cf. in chapel hill, north carolina, similar findings were noted, as % of individuals with cf were infected with sccmec type ii strains, while only % were infected with sccmec type iv strains. the latter group consisted of youn- ger individuals. in a multicenter study conducted in the united states from to , sccmec type ii strains were more common than sccmec type iv strains, accounting for % of mrsa isolates, and % of sccmec type iv strains that harbored panton-valentine leukocidin were usa , the most common community-associated mrsa clone. in a multicenter study conducted in italy, mlst analysis revealed common types in multiple individuals with cf at- tending multiple cf centers. twenty-nine strains from cf centers were identified as st sccmec type iv (usa), and strains from cf centers were identified as st sccmec type i (also a healthcare-associated clone initially reported from the united kingdom). thus, epidemic lineages of mrsa from around the world have been identified in the cf population in italy. it is not clear why the sccmec type i and ii strains predominate among individuals with cf at a time when sccmec type iv predominates in non-cf pop- ulations. it is likely that more sensitive testing (eg, rep-pcr or whole-genome sequencing) will provide more precise in- formation about the extent of person-to-person transmission of mrsa. , clinical impact of mrsa. recent reports have demon- strated that chronic infection with mrsa is associated with downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nf ec ti on c ont ro l a nd h os pita l e p ide m io logy a u gu st , v o l. , n o. s increased morbidity and mortality. in a study using the cffpr, when compared with , individuals with cf without chronic mrsa infection, , individuals chroni- cally infected with mrsa had an increased rate of decline in lung function (decline in fev % predicted . % per year vs . % per year, respectively). similar findings have been reported by others. - in addition, mrsa has also been associated with increased mortality; in a cohort study of , individuals reported to the cffpr with at least years of follow-up, those with mrsa had a . higher risk of death when adjusted for severity of disease. iii.a. . nontuberculous mycobacteria shared ntm strains. until recently, there was little evi- dence for shared strains of ntm species among individuals with cf. , in a multicenter study conducted in the united states, most of the ntm isolates appeared to be distinct by single-locus (hsp ) sequence analysis. among ntm- infected individuals with cf included in a study in sweden, a shared strain was found only in pair of siblings. however, a recent report from the united states described the use of rep-pcr and pfge typing to show the apparent spread of a strain of m. abscessus subsp. massiliense from a chronically infected adult with cf to others attending the same clinic in seattle. the index case and others died within several months of becoming infected. similarly, typing of strains of m. abscessus complex from individuals with cf in the united kingdom using a novel variable-num- ber tandem repeat scheme and an automated rep-pcr system found that most were persistently infected with a single clone, but some shared strains; no differences in clinical outcomes linked to specific strains was reported. in another recent report of ntm transmission, whole-genome sequencing and single-nucleotide polymorphism analysis were used to char- acterize m. abscessus complex isolates from individuals at a cf care center in the united kingdom. two clusters ( consisting of individuals and consisting of individ- uals) of m. abscessus subsp. massiliense were identified, with epidemiologic evidence of opportunities for person-to-person spread within the hospital setting. the strains from seattle and the united kingdom outbreaks are highly related and are also related to strains causing soft-tissue infections in brazil. however, it is currently unknown why these strains from around the world are related. a third outbreak of m. abscessus occurred from to at a pediatric cf center in hawaii, in which ( %) of children were infected with the same strain as identified by pfge. an investigation conducted in conjunction with the department of health revealed that the pft laboratory was the most likely source of transmission, as the infected patients performed pfts at the same time in very close proximity. clinical impact of ntm. m. abscessus in particular is challenging to treat and may be associated with rapid clinical deterioration and poor outcomes after lung transplanta- tion. - a multicenter prospective study conducted more than a decade ago showed no association between m. abscessus and decline in lung function, but a longer single-center study showed that chronic m. abscessus infection was asso- ciated with an excess decline of . % predicted fev per year. , summary in summary, epidemiologic studies have shown that individ- uals with cf can share the same strain of several cf path- ogens. for decades, person-to-person transmission of burk- holderia spp. has been described, while person-to-person transmission of p. aeruginosa has been increasingly recognized in cf centers worldwide. mrsa strains detected in people with cf have been identified as epidemic clones, causing both healthcare- and community-associated infections in both cf and non-cf populations. thus, studies of transmission of mssa and mrsa are confounded by the fact that such species commonly colonize and infect people without cf. most re- cently, compelling evidence of person-to-person transmission of m. abscessus has been described. currently, the route(s) of transmission, including the potential for transmission by droplet nuclei, and the role played by mycobacterial virulence factors are under investigation. multicenter studies, core lab- oratories, and use of advanced molecular methodologies are needed to understand the frequency and routes of transmis- sion of mycobacteria in persons with cf. epidemic strains of burkholderia, pseudomonas, and m. abscessus as well as in- fection with mrsa have been associated with increased mor- bidity and mortality. use of higher resolution typing, such as whole-genome sequencing, is needed in future studies to provide a more precise understanding of the dynamics of transmission. iii.b. acquisition from people without cf iii.b. . p. aeruginosa and burkholderia spp. approximately % of people without cf may have gastro- intestinal tract colonization with p. aeruginosa. p. aeruginosa is a well-described opportunistic pathogen of immunocom- promised non-cf individuals, including oncology patients, burn victims, and ventilated patients. - to our knowledge, there is only case report of transmission of p. aeruginosa to the non-cf household members of a person with cf. both parents of a -year-old woman with cf, infected with the les, developed pneumonia caused by this strain. both were carriers of abnormal cftr, but neither had cf. b. cepacia complex strains do not colonize people without cf but can cause infections in individuals who are im- munocompromised, including those with chronic granulo- matous disease or solid-organ transplantation. , to our knowledge, there is only case report describing hospital transmission of burkholderia from a non-cf individual with downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s chronic respiratory failure to multiple patients with and with- out cf. iii.b. . s. aureus unlike other cf pathogens, both mssa and mrsa can col- onize and infect non-cf individuals, including household members and other close contacts. thus, there is the potential for acquisition of s. aureus in healthcare and community settings from people without cf. furthermore, as described above, healthcare- and community-associated mrsa strains can infect people with cf. , definitive evidence of trans- mission of mrsa, particularly community-associated strains, may be confounded by the observation that relatively few clones have been described, and highly sensitive molecular techniques have been used only in recent years. mrsa colonization and infections in non-cf patients. for decades, mrsa infection and colonization in patients without cf were exclusively associated with hospitalization, chronic care facilities, or dialysis units. beginning in the late s, mrsa infections began to occur in the community setting in previously healthy individuals, so-called commu- nity-onset or community-acquired mrsa (ca-mrsa). skin and soft-tissue infections are the most common man- ifestation of ca-mrsa, but necrotizing pneumonia, bone infections, and sepsis are also described. - a recent meta- analysis assessing mrsa colonization of the anterior nares in children described a prevalence of . % in hospitalized children and % in children in the community, suggesting that mrsa colonization is relatively common in the general population. transmission from non-cf patients. to our knowledge, there is only report describing healthcare-associated trans- mission of mrsa from patients without cf to patients with cf. in australia, transmission of mrsa from patients without cf to individuals with cf hospitalized in the same ward at the same time was described. however, the authors did not describe the routes of transmission and the ip&c strategies that were in place. cf households. in a multicenter study of children with cf with mrsa in new york, non-cf household members had anterior nares colonization with the same strain of mrsa ( . % vs . % of case vs control household members). while the direction of transmission is unknown, it is likely that the non-cf family member acquired mrsa from his or her child with cf. no staphylococcal infections occurred in household members. healthcare personnel. the anterior nares of healthcare personnel without cf may be colonized with mrsa. how- ever, routine screening is not recommended, unless healthcare personnel are epidemiologically associated with ongoing transmission. , - in contrast, healthcare personnel without cf who develop symptomatic mrsa infections (eg, draining wounds, sinusitis with drainage, and superinfection of chronic dermatitis) should be placed on administrative leave, treated until no longer infectious, and obtain clearance from the facility’s occupational health service before returning to work. , other nonhealthcare settings, including sports teams. participation in sports has been identified as a risk factor for the development of mrsa colonization and infection in the non-cf community, presumably due to skin colonization, skin abrasions, intimate contact between players, and poor hygiene. , mrsa has been detected both in the environ- ment (eg, locker room, strength and conditioning equipment, and whirlpool equipment) and in samples obtained from ath- letes (eg, nose, skin sites, and shoes). - in addition, out- breaks of mrsa skin and soft-tissue infections have been reported among members of sports teams. , - however, to our knowledge there are no reports of transmission of mrsa from a person with cf on a sports team to another athlete without cf or vice versa. thus, there are no data to support exclusion of an individual with cf with mrsa in their respiratory tract from participation in sports. the cdc has developed recommendations to prevent mrsa transmission among athletes and in athletic facilities. they include the following: ( ) improve hygiene among ath- letes by covering and containing wounds, showering after participating in sports activity, washing and drying uniforms after each use, not sharing personal items (eg, razors), and reporting possible infections to the team physician, athletic trainer, school nurse, or primary care doctor so that treatment can be initiated promptly; ( ) clean and disinfect athletic facilities, including showers, using appropriate cleaning and disinfection measures; and ( ) exclude athletes with mrsa wound infections from participation if wounds cannot be completely covered or if a healthcare provider determines that the infection poses a risk to the individual with the infection. athletes with mrsa infections should not use com- mon-use water facilities or pools until the infection has resolved. iii.b. . respiratory viruses viral respiratory pathogens, including respiratory syncytial virus (rsv), rhinovirus, and influenza virus, pose a risk to people with cf. in adults and children with cf, viral infec- tions can trigger pulmonary exacerbations, - particularly influenza virus , and rhinovirus. , exacerbations in which a virus is identified are associated with worse clinical severity compared with viral exacerbations. as sensitive vi- ral detection methods like real-time pcr become increasingly available and identify a broader range of viruses, the role played by other viral pathogens (eg, coronavirus and human metapneumovirus) in cf exacerbations will be further elucidated. summary transmission of gram-negative bacterial pathogens between people with cf and people without cf is very rare. given downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nf ec ti on c ont ro l a nd h os pita l e p ide m io logy a u gu st , v o l. , n o. s the recent observations that people with cf are infected with community-associated mrsa, it is feasible that some trans- mission of s. aureus is occurring between people with and without cf. further studies are needed to assess the extent to which this occurs. in contrast, it is highly likely that viral pathogens are frequently transmitted between people with and without cf, given the annual community outbreaks of seasonal viruses and the high transmissibility of these agents. iii.c. acquisition from animals overview of zoonotic infection. more than microor- ganisms can cause zoonotic infections, defined as pathogens transmitted from animals to humans or from humans to animals. the cdc’s national center for emerging and zoo- notic infectious diseases is charged with preventing disease and disabilities from such infections. people with cf can have opportunities for close contact with animals, including with personal pets, service animals, and pet therapy animals as well as farm animals and animals in petting zoos. pets. a few reports have addressed transmission of path- ogens from animals to people with cf and from people with cf to animals. - following lung transplantation, bordetella bronchiseptica pneumonia developed in children with cf who acquired this pathogen from ill pet dogs, and child died. - b. bronchiseptica was also detected in the respira- tory tract of a child with cf who acquired this organism from an ill kitten, and this child had no adverse effects following treatment. the les of p. aeruginosa was transmitted from a -year-old man with cf to his pet cat; the cat developed respiratory symptoms. the reptile collection of a person with cf was cultured and not found to harbor potential cf pathogens. mrsa colonization and infections have been described in dogs, cats, rabbits, hamsters, guinea pigs, turtles, chinchilla, and birds. , outbreaks of mrsa have been described in animal hospitals, and both hospital- and community-asso- ciated strains have been identified. most of these are sporadic infections, but when outbreaks occurred, they are thought to reflect initial transmission from people to animals. , there are limited data on the frequency of mrsa transmission from animals to humans, and there are no published data describ- ing this phenomenon in people with cf. mycobacterium marinum skin and soft-tissue infections have been linked to cutaneous exposure to fish tanks. in- fections have occurred in both immunocompetent and im- munocompromised patients, including transplant recipi- ents. risk factors included exposure to fish tanks, the presence of open skin lesions during the cleaning of fish tanks, fishing, and exposure to aquarium water. there are no pub- lished reports of m. marinum infections in individuals with cf linked to fish tank exposure. the cdc has several ip&c recommendations for people who own pets that are relevant for people with cf who own pets. these recommendations emphasize using hygienic principles to prevent zoonotic infections, including ( ) hand hygiene, ( ) disinfecting cages or tanks, ( ) appropriate pre- ventive care for pets, ( ) prompt assessment of ill pets by a veterinarian, and ( ) wearing gloves while cleaning fish tanks. handling of reptiles is not recommended for any individuals at risk of serious complications of salmonella infections. pet therapy and service animals. many institutions, par- ticularly children’s hospitals, have introduced pet therapy programs that allow pets that have been certified to be free of certain infections to visit patients in healthcare settings. recommendations for such programs include ( ) training programs for the dogs and their owners, ( ) stringent criteria for animal vaccinations and cleanliness, and ( ) criteria for eligible patients. , the importance of hand hygiene before and after contact with the animals is emphasized. patients under transmission-based precautions, those with animal al- lergies, or children frightened by animals are generally ex- cluded from participation. to date, there are no reports of transmission of potential pathogens from pet therapy animals to people with cf. people with cf can participate in such programs as per local institutional policies. service animals represent unique interactions between peo- ple and animals by providing guidance and support for both physical and emotional disabilities. there are no published reports of transmission of potential pathogens from service animals to people with cf. people with cf can participate in such programs when instituted as per relevant state and federal guidelines. farm animals. farm animals have been associated with several types of zoonotic infections. farm animals have been linked to transmission of viral pathogens to humans, most notably influenza virus from pigs (http://www.who.int /topics/influenza/en/) and coronavirus. animal stalls, sheds, and coops may become heavily contaminated with fecal flora as well as with aspergillus and other molds that prolif- erate in hay and other organic matter. thus, it would be prudent for people with cf to avoid cleaning stalls, pens, or coops and to perform other chores instead. to date, there are no reports of transmission of potential pathogens from farm animals to people with cf. nonetheless, farm animals may represent a source of potential pathogens for people with cf. theoretical concerns include ( ) influenza infections; ( ) abpa caused by cleaning stables; ( ) mrsa from horses and pigs; and ( ) p. aeruginosa from horses. , in summary, while there are limited data describing zoo- notic infections in people with cf, people with cf and their families should follow preventive strategies described in na- tional guidance documents. iii.d. acquisition from the inanimate environment iii.d. . nonhealthcare sources: soil, organic matter, and water overview. there has been continuing concern that the nat- ural environment (eg, water and soil) may be a reservoir for cf pathogens, such as p. aeruginosa, burkholderia spp., ntm, downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. http://www.who.int/topics/influenza/en/ http://www.who.int/topics/influenza/en/ https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s and aspergillus spp. p. aeruginosa is ubiquitous in rivers, aquatic areas, soil, and plants worldwide. b. cepacia complex can be found in rice, wheat, and maize rhizospheres and in human sewage, and b. gladioli and b. cepacia are well-rec- ognized plant pathogens. other species, particularly burk- holderia ambifaria, exist within the rhizospheres of certain plants, while b. multivorans is infrequently recovered from the environment. - several investigations since the pub- lication of the infection control guideline for cf have enhanced our understanding of the potential role played by the natural environment in the acquisition of cf pathogens and possible strain-specific reservoirs. burkholderia spp. implementation of strict ip&c mea- sures has eliminated new acquisition of several epidemic burkholderia strains, including et and slc , among people with cf. , the incidence of infection with the phdc and the midwest clone has decreased but has not been eliminated with improved ip&c practices, and individuals with cf have been infected in the absence of apparent contact with others with cf (j.j.l., unpublished observations, october ). strain phdc has been recovered from agricultural soil in the united states, including onion fields, and from people with cf in diverse locations in the united states and europe, suggesting that this strain is widely distributed in the natural environment, which serves as a source of ongoing acquisi- tion. , - strains identical to those found in people with cf have also been isolated from onions and onion rot. , furthermore, mlst analysis demonstrated that more than % of cf isolates of burkholderia were indistinguishable from strains recovered from the natural environment. b. cepacia complex isolates with the same nucleotide identity at all mlst loci have been isolated from people with cf and from river water, suggesting another possible environmental reservoir. finally, b. cenocepacia and burkholderia viet- namiensis have been isolated from human sewage in the united kingdom, but genotyping of these isolates was not performed. in contrast, the midwest strain of b. cenocepacia has not been found in the natural environment in regions where this strain infects people with cf. , p. aeruginosa. in the homes of people without cf, p. aeruginosa was detected most often from kitchen and bath- room drains but not from soil. similarly, in the homes of people with cf, p. aeruginosa was detected most often from shower drains and bathroom drainpipes. , while p. aeru- ginosa was recovered from % of the homes of newly in- fected people with cf ( % of samples), only ( %) of paired environmental and patient isolates were the same strain. it remains unclear whether these p. aeruginosa strains were transmitted from the individuals with cf to the home environment or vice versa, but it suggests that cleaning and disinfection efforts in the homes of people with cf should focus on bathroom drains. there are insufficient data to de- termine the optimal frequency of cleaning showerheads. however, showerheads that have smoother surfaces may be less prone toward retaining organisms than those that have more crevices. in switzerland, a very low prevalence of p. aeruginosa was detected in public outdoor pools, standing water, and running water from the bathroom taps of people with cf. p. aeru- ginosa has been isolated from whirlpool spas and hot tubs, and outbreaks of folliculitis and more serious infections caused by p. aeruginosa have been associated with hot tubs and whirlpool bathtubs. in the united states, an observa- tional study of children with newly acquired p. aeruginosa did not find that hot tub use was associated with age at p. aeru- ginosa acquisition but did find that swimming pool use in the previous year was protective. these findings may reflect the relatively healthy pulmonary status of the children with cf enrolled in this study. natural bodies of fresh water (eg, rivers and lakes) have not been definitely proven to be a source of cf pathogens, but stagnant water should always be avoided due to a heavy burden of potential pathogens that flourish in organic debris. however, after heavy rains fresh bodies of water may be con- taminated with sewage overflow, and local/state monitoring should be reviewed before swimming in such water. in germany, the p. aeruginosa strain designated clone c has been recovered from individuals with cf and from en- vironmental samples from geographically diverse areas. this same strain was subsequently identified from people with cf in the united kingdom, further suggesting a broad distribution of this particular strain in the natural environ- ment. other p. aeruginosa epidemic strains have not been identified in environmental samples, although genotyping surveys of large numbers of strains recovered from the en- vironment have not been performed. other gram-negative bacteria. s. maltophilia is com- monly found in soil and has been identified in well and river water, stream sediment, raw milk, frozen fruit, and sew- age. , species other than a. xylosoxidans, a. rhulandii, ach- romobacter piechaudii, and achromobacter denitrifican are found in soil and rarely cause human infections. ntm. the natural habitat for ntm is soil and water, and the prevalence of ntm in the natural environment has wide geographical variation. under experimental conditions, high numbers of pathogenic ntm were recovered from aero- sols produced by commercial potting soils. when ntm- infected individuals without cf submitted their own potting soils for pfge analysis, patient-soil pair had indistinguish- able strains of m. avium and patient-soil pairs had closely related strains of m. intracellulare, suggesting that potting soil could be a reservoir for ntm for people with cf who have intense, repeated exposures. another study isolated m. avium-intracellulare from % of residential soil samples in japan and found clinical and corresponding soil isolate pairs with identical genotypes from non-cf case patients with high soil exposure, defined as more than or equal to hours/week, including digging or carrying soils, mowing grass, planting flowers, and exposure to soil dusts when farming or garden- ing. thus, although these studies were not conducted in people with cf, they do suggest that it may be prudent to limit exposure to soil. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h o sp ita l e p ide mi ol ogy a u gu st , v o l. , n o. s aspergillus spp. and other filamentous fungi. the most frequent species of filamentous fungi isolated from peo- ple with cf are a. fumigatus, scedosporium apiosporium, and a. terreus. the natural habitat for aspergillus spp. is soil, where they function as saprophytes growing on organic debris and recycling carbon and nitrogen throughout the environment. as a result, aerosolized conidia are ubiquitous in the envi- ronment. characteristics of a. fumigatus that promote suc- cessful colonization of the airways include thermotolerance, small and abundant conidia, fast growth rates, and produc- tion of toxic metabolites and enzymes that are effective in breaking down complex polysaccharides. a. terreus is seldom reported from environmental sources, but in one study of air and surface samples from patient rooms and soil from the park adjacent to the hospital, a. terreus was found only in the soil samples; however, there were no common genotypes in patient and soil samples. s. apiosporium is found in highly polluted soils and water but is rarely encountered in the environment. in one study of air and surfaces in the homes of people with cf, large concentrations of s. apio- sporium were isolated from ( %) of potted plants, but no genotyping was reported. in conclusion, the intensity and duration of exposure to these environmental reservoirs of filamentous fungi may increase the risk of acquisition by people with cf. however, without genotyping studies, this link remains unconfirmed. summary. although many cf pathogens may be found in the inanimate environment, there are few instances where the same genotypes are found in the natural environment and in isolates from the respiratory secretions of people with cf. nonetheless, it is prudent to avoid activities that include prolonged and intense exposure to soil, construction, and swimming in pools that are not appropriately chlorinated or swimming in stagnant water. iii.d. . healthcare sources: water, surfaces, equipment, air, and contaminated products water and other fluids. water has been the source of healthcare-associated infections and linked to outbreaks caused by legionella, pseudomonas, stenotrophomonas, burk- holderia, and achromobacter. in both inpatient and am- bulatory healthcare settings where people with cf receive care, the highest number of positive environmental cultures for p. aeruginosa were from the sink drains or showers in patient rooms. , one study found genetic relatedness in of clinical and environmental strains, but it was un- certain whether p. aeruginosa was transmitted from the in- dividuals with cf to the clinical environment or vice versa. the sources of healthcare-associated infections caused by s. maltophilia are poorly understood. in non-cf patients, s. maltophilia has been linked to inappropriate use of hand moisturizing lotion, rather than soap, by healthcare person- nel and to contamination of faucet aerators in intensive care unit (icu) sinks. furthermore, s. maltophilia has been recovered from hospital sink drains, faucets, and potable wa- ter. , in general, genotyping analyses have not shown that isolates obtained from the hospital environmental are the same as those recovered from patients, , and the majority of non-cf patients infected with s. maltophilia had genetically distinct strains. none of s. maltophilia isolates recovered from water, taps, and sinks in patient rooms matched the strains recovered from individuals with cf. despite these occasional outbreaks related to a water source, routine environmental sampling, including culturing water supplies, is not advised, except for water-quality de- terminations in hemodialysis settings and other situations where sampling is directed by epidemiologic principles, and results can be applied directly to infection control decisions. removal, cleaning, and disinfecting of showerheads and tap aerators once a month with an epa-registered product or a chlorine bleach solution ( – ppm [ : dilution]) has been recommended as part of legionella control measures, but there are insufficient data to support a widespread rec- ommendation and specific time intervals, given the infre- quency of outbreaks associated with faucet aerators. healthcare surfaces. several studies in healthcare facili- ties, many of which utilized molecular typing methods, have identified the same pathogens on inanimate surfaces as those recovered from non-cf patients, including vre, mrsa, c. difficile, acinetobacter spp., and norovirus. - pathogens shed by patients can contaminate healthcare surfaces at con- centrations sufficient for transmission, can survive for ex- tended periods of time, and can be transferred to the hands and clothing of healthcare personnel, leading to further trans- mission. surface contamination with vre resulted from the failure to clean rather than faulty cleaning methods or prod- ucts, thereby supporting the concept that education about cleaning and compliance monitoring could reduce environ- mental contamination. as further evidence of the role played by contaminated surfaces in hospital-associated in- fections, a patient admitted to a room previously occupied by a patient colonized or infected with a pathogen (eg, mrsa, vre, c. difficile, or acinetobacter spp.) has an increased like- lihood of developing colonization or infection with that path- ogen due to inadequate decontamination of surfaces. , - in healthcare facilities that deliver care to people with cf, contamination of dry environmental surfaces with cf path- ogens was low, but contamination of the hands of people with cf was higher. in a liverpool cf center, contami- nation of inanimate surfaces was transient and negative after patient discharge and routine cleaning. similar findings have been noted in other cf clinics. , healthcare equipment. contamination of medical equip- ment is another potential source of pathogens for people with cf. during simulated examinations, stethoscopes acquired and transferred mrsa and c. difficile nearly as often as gloved hands, and rsv has been detected on stethoscopes in non- cf settings. in cf settings, stethoscopes used in a clinic were not found to be contaminated with cf pathogens, and downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s in a more recent study p. aeruginosa and s. aureus were rarely recovered from stethoscopes, pulse oximeters, and otoscopes. nevertheless, there is sufficient evidence to support the im- portance of cleaning and disinfecting medical equipment after use by one person with cf prior to use by another person with cf, according to hospital protocols. numerous outbreaks (and pseudo-outbreaks, ie, no evi- dence of infection or disease linked to recovery of micro- organism) of p. aeruginosa, other gram-negative bacilli, and ntm have been linked to contaminated medical devices. for example, outbreaks of p. aeruginosa have been linked to in- adequate processing of rigid , and flexible laryngo- scopes, flexible bronchoscopes, - and defective repro- cessors for bronchoscopes and endoscopes. similarly, outbreaks and pseudo-outbreaks of ntm have been linked to bronchoscopes, and a hospital hydrotherapy pool con- taminated with m. chelonei that led to infections in children with cf. air. infectious droplets in the air may represent another source of transmission for cf pathogens. p. aeruginosa was recovered from the air in hospital rooms minutes to hours after people with cf left, , and the les of p. aeru- ginosa was recovered from the corridors of cf clinics as long as hours after individuals had left the area. in the united kingdom, after individuals with cf performed pfts or neb- ulization, the manchester epidemic strain of p. aeruginosa as well as nonepidemic p. aeruginosa were recovered from the air. in france, the concentration of p. aeruginosa was highest after the person with cf awoke or performed chest physio- therapy. several cf pathogens (ie, p. aeruginosa, mssa, and mrsa) were recovered from air collected feet from cf subjects in exam rooms; these strains were the same as those infecting the subjects as assessed by pfge. similarly, cf pathogens were recovered from the air feet from cf subjects performing pfts. factors associated with generating infec- tious droplets of p. aeruginosa are unknown, as exacerbations, sick versus well cf clinic visits, or age were not predic- tive. , we emphasize that none of these observational stud- ies were associated with person-to-person transmission, but such data provide evidence of the potential for such trans- mission and, thus, the importance of implementing strategies to prevent droplet transmission. furthermore, as previously described the potential for transmission of m. abscessus by droplets or droplet nuclei has been suggested, , but to our knowledge no studies to date have demonstrated the specific route(s) of ntm transmission among people with cf. contaminated products. burkholderia spp. are the most frequently isolated bacteria in nonsterile and sterile pharma- ceutical products that have been recalled. , many healthcare- associated outbreaks of burkholderia infections associated with contaminated skin antiseptics, mouthwashes, ultrasound gels, medications, and medical devices have been described. - other products that have become contaminated during use include nasal irrigation bottles contaminated with p. aeru- ginosa, , multiuse albuterol vials contaminated with b. cepacia, , acupuncture devices disinfected with glutaralde- hyde contaminated with m. abscessus, cosmetic surgical sup- plies contaminated with mycobacterial spp., and supplies used for liposuction. outbreaks of achromobacter spp. have been attributed to contaminated disinfectant solutions, dialysis flu- ids, saline solution, and deionized water. in addition, prod- ucts used in nonhealthcare settings can become contaminated during manufacturing and can cause extensive outbreaks. these have included alcohol-tattoo ink contaminated with m. chelonae and footbaths in nail salons contaminated with ntm spp. summary. most potential sources of pathogens that have been identified in the healthcare environment can be elimi- nated by following facility processes for the cleaning and disinfection of surfaces and equipment. although there are no published reports of proven acquisition by people with cf from contaminated products, such sources present a po- tential risk and should be considered during any outbreak investigation in people with cf. the cf care team should receive alerts for contaminated products sent by the food and drug administration’s (fda’s) medwatch and the cdc’s health alert network. iii.d. . construction and renovation multiple outbreaks of airborne filamentous fungi, principally due to aspergillus spp., have been reported in hospitals as- sociated with construction, renovation, repair, and demoli- tion. - while most of the outbreaks were related to con- struction or renovation, problems with the air supply system have also been implicated. the most common species in- volved in the outbreaks were a. fumigatus and a. flavus, al- though a substantial number involved more than species of aspergillus. groups at highest risk for nosocomial infection during these outbreaks included persons with hematologic malignancy, solid-organ transplantation, and other immu- nocompromising conditions (eg, high-dose steroid therapy). we were unable to find any studies assessing a healthcare source for aspergillus in cf. furthermore, cf has not been described as a risk factor for acquisition of invasive asper- gillosis in nosocomial outbreaks related to construction, ren- ovation, repair, or demolition. nevertheless, it is prudent to ensure that dust-containment strategies are followed through- out the entire healthcare facility. iv. strategies to reduce transmission and acquisition of cf pathogens iv.a. overview several published experiences have described the effectiveness of stringent ip&c practices and policies for reducing the prev- alence of epidemic b. cepacia complex, the les strain, , , and other transmissible strains of p. aeruginosa. , , , in- terventions have included education of healthcare personnel and people with cf and their families about risk factors for downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h o sp ita l e p idem i ol ogy a u gu st , v o l. , n o . s routes of transmission and preventive strategies, emphasizing hand hygiene for people with cf and healthcare personnel, the use of single-patient rooms when people with cf are admitted to the hospital, contact precautions, avoiding so- cializing in both healthcare and nonhealthcare settings, im- proving detection of cf pathogens in microbiology labora- tories, decontaminating the healthcare environment, and cohort segregation of patients known to be harboring specific pathogens while in a cf clinic. most recently, efforts to prevent further transmission of m. abscessus subsp. massiliense in an adult cf clinic included educating and reinforcing ip&c strategies for cf to the cf care team and individuals with cf, cleaning all clinic and equipment surfaces twice, and the use of a negative pressure room for all ntm-infected indi- viduals. , in a pediatric cf center experiencing an outbreak of m. abscessus, investigators concluded that the pft labo- ratory was the most likely source of transmission and changed from performing pfts in a central laboratory to performing portable spirometry in clinic exam rooms. notably, several strategies were used to control each outbreak and most likely included enforcing preexisting ip&c practices. thus, it is impossible to conclude which intervention(s) were most ef- fective. however, similar to other prevention programs in ip&c—such as reducing device-related infections, including central line–associated bloodstream infections and ventilator- associated pneumonia—it is likely that implementation of a bundle of practices is required to reduce transmission of cf pathogens. - the following sections describe the ip&c strategies rec- ommended in this updated guideline. the recommenda- tions are intended for all people with cf, regardless of respiratory tract culture results. the recommendations should also be followed for people with cf following lung or liver transplantation, as such individuals are immunocom- promised, at risk of becoming infected from others with cf, and following transplantation may continue to harbor cf pathogens. the recommendations for healthcare settings are intended for cf clinics and other ambulatory care areas, in- patient settings, diagnostic areas, and all clinical research ac- tivities. successful and consistent implementation of ip&c practices must include the ongoing participation of people with cf and their families and auditing the performance of healthcare personnel. depending on available resources, a center may choose to implement the recommended ip&c practices in all areas at once or may choose to stage the implementation by setting. iv.b. education strategies overview. to successfully implement the recommendations in this guideline, several stakeholders must be educated, in- cluding ( ) all healthcare personnel who have contact with people with cf (eg, physicians, nurses, respiratory and phys- ical therapists, radiology and laboratory personnel, social workers, operating room staff members, research coordina- tors, administrative personnel, and environmental services personnel); ( ) all people with cf, from toddlers to adults (individuals may have varied age-appropriate experience, knowledge, and motivation regarding ip&c); and ( ) families and friends of people with cf. families of older adolescents and adults with cf may strug- gle to accept the paradigm shift that has taken place for ip&c during the past decade on the basis of new knowledge of transmission of cf pathogens. families of newly diagnosed individuals are more likely to be receptive to the current recommendations, as they have less prior experience. there- fore, different strategies may be required for educating dif- ferent groups. educators must recognize the needs and levels of under- standing of various groups of stakeholders to optimize the effectiveness of educational programs. while the cf foun- dation has developed educational tools, individual cf center staff may also create their own tools and include people with cf and their families in the development process. fortunately, the disciplines of cf and of ip&c have a great deal of expe- rience providing education to other healthcare personnel, pa- tients, and families. some examples include the myriad edu- cational materials to promote proper hand hygiene, cough etiquette, and respiratory hygiene aimed at preventing the spread of pathogens transmitted by the droplet route; these are available in many languages and literacy levels. information is also available on the cf foundation’s website (http://www .cff.org). education should be provided to people with cf and their families on a regular basis using a variety of learning methods, including written, visual, demonstration, and return dem- onstration. in a survey of people with cf and the parents of children with cf, only % reported that they had discussed hand hygiene with their cf care team; fewer were told to perform hand hygiene when entering ( %) and leaving ( %) the cf clinic. this study provides just one example of missed opportunities to improve ip&c education. the following components of effective education should be incorporated into ip&c education for cf: ( ) developing knowledge, skills, and attitudes; ( ) identifying and engaging stakeholders; ( ) utilizing positive deviance and early adopters as described below; and ( ) performing audits and providing feedback. knowledge, skills, and attitudes. the importance of knowledge, skills, and attitudes in educating individuals to change behavior has been described in the cf community , as well as for healthcare personnel. - knowledge, or facts, can be taught using didactic or case-based methods at the bedside or in the clinic. adults learn best if they perceive the relevance of the information to their personal situation and are provided with the rationale. adult learning is most effective when flexible and when educational methods encourage net- working, critical analysis, and reflection on practice and provide an opportunity for open questioning. in contrast, children will benefit from methods that are age appropriate. provision of downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. http://www.cff.org http://www.cff.org https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s repeated exposure to educational information is critical to re- inforce the principles and allow for questioning. skills are prac- tical tasks that range from very simple procedures to complex techniques applied to varying circumstances. observations of adult learners and return demonstrations by adult learners are effective methods to assess skill level and competency to per- form tasks independently. children are also eager to demon- strate their mastery of new skills, and their learning can be validated using a show-and-tell strategy. attitudes are the prod- ucts of individual beliefs and professional and personal life experiences. focus groups and questionnaires are useful tools for defining the beliefs of the target audience and addressing specific attitudes and beliefs; these techniques have been suc- cessful with environmental services workers. stakeholders. implementation of the recommendations in this document will likely require many stakeholders to change their practices. therefore, people with cf, their fam- ilies, and healthcare personnel must believe that change is necessary. people with cf must believe that change will ben- efit them. healthcare personnel must believe that change will benefit their patients and/or themselves in terms of being rewarded for their performance and professionalism. fur- thermore, effective education must engage clinical opinion leaders who command the respect of those around them, understand the reasons for change, and can help implement needed change. while senior clinical staff members can serve as role models for needed change, in other settings such in- dividuals may be the most resistant to change. if the latter occurs, focused efforts are needed to engage these individuals and ensure that they understand the importance of the rec- ommended changes in practice and their unique role in mod- eling these changes. notably, the lack of positive role mod- eling among senior clinical staff was cited as a reason for low adherence to hand hygiene practices. positive deviance/early adopters. another successful strategy to effect change is the use of positive deviance or early adopters. positive deviance is based on the observation that within every community are individuals or groups whose unique behaviors and strategies enable them to find better solutions to problems than their peers, despite having access to the same resources and facing similar or worse challenges. positive deviance is an asset-based, problem-solving, com- munity-driven approach that facilitates discovery of success- ful behaviors and strategies and the development of an action plan to promote their adoption by all concerned. positive deviance has been used to combat seemingly impossible prob- lems in the community (eg, childhood malnutrition) and in healthcare settings (eg, reduction of mrsa infections and improvement in hand hygiene compliance). thus, the cf community can be innovative and can include the positive deviance approach to effect change. audits and feedback. auditing healthcare personnel ad- herence to recommended practices (eg, hand hygiene and contact precautions for patients with mrsa) has become an important part of routine ip&c and/or quality improvement programs and is required by credentialing organizations, such as the joint commission. feedback may occur at any time and by anyone when a lapse in practice is observed. trends of audit results should be provided to clinical teams at regular intervals (eg, quarterly, semiannually, or annually). organi- zational research has demonstrated that the success of ad- herence to guidelines is determined by the quality of the feedback. feedback should be timely, individualized, non- punitive, and customizable and should involve the recipients of the feedback in the planning of the feedback program. thus, collaboration of the cf care team with ip&c staff to develop an auditing and feedback program is recommended to facilitate implementation of the recommendations in this guideline. the interested reader is referred to a discussion of the theories of feedback interventions. iv.c. hand hygiene hand hygiene is a component of standard precautions, which are practices aimed at preventing the transmission of infec- tious agents. standard precautions are based on the principle that all blood, body fluids (eg, sputum and saliva), secretions, excretions (eg, urine, stool, and wound drainage but not sweat), nonintact skin, and mucous membranes may contain transmissible infectious agents. therefore, containing these potential sources will reduce the risk of transmission of in- fectious agents. recommendations for standard precautions are based on strong evidence from healthcare settings that has been summarized in the cdc/hicpac guideline for isolation precautions. hand hygiene is the single most important measure to protect people with cf, healthcare personnel, family mem- bers, and friends from transmission and acquisition of po- tential infectious agents and to prevent contamination of the environment. the cdc/hicpac and the who have pub- lished comprehensive guidelines for hand hygiene in health- care settings, , and the updated shea/idsa compendium of strategies to prevent healthcare-associated infections in acute care hospitals, published in , contains informa- tion on hand hygiene. many recommendations in these guidelines can also be applied to nonhealthcare settings, in- cluding the home, school, and workplace. hand hygiene in nonhealthcare settings has reduced respiratory and gastro- intestinal tract infections. , hand hygiene opportunities for healthcare personnel, people with cf, and families are summarized in table . healthcare personnel should perform thorough hand hy- giene, as presented in the figures in the who guide- line, before and after contact with patients and whenever hands are contaminated with respiratory secretions or other body fluids. contamination may occur from direct patient care activities, from contact with surfaces or equipment in a patient’s environment, and/or following coughing or sneezing by healthcare personnel. use of an alcohol-based hand rub is the preferred hand hygiene method, as these products have downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h o sp ita l e p ide mi ol ogy a u gu st , v o l. , n o. s table . examples of opportunities for hand hygiene by healthcare personnel, people with cystic fibrosis (cf), and families healthcare personnel people with cf family members entering cf clinic or hospital room x x x leaving cf clinic or hospital room x x x before or after contact with patient x na na before and after performing pulmonary function tests x x na after obtaining respiratory tract culture x x x after coughing x x x before putting on and after removing gloves x na na when hands are contaminated with respiratory secretions x x x before and after cleaning and disinfecting nebulizer equipment x x x before donning gloves for performing sterile procedures x na xa after using restroom x x x note. x, applicable to this population; na, not applicable to this population. a if performing activities involving a central venous catheter. demonstrated greater efficacy in reducing bacterial contam- ination of hands compared with washing with plain or an- timicrobial soap and water. alcohol-based hand rubs have excellent activity against gram-positive and gram-negative bacteria, including mdros, ntm, a variety of fungi, and such viruses as rhinovirus, adenovirus, influenza virus, and rsv. , however, in healthcare settings soap and water are used when hands are visibly dirty, sticky, or contaminated with blood or body fluids. if soap and water are used, an- timicrobial soap, such as one containing chlorhexidine glu- conate, is preferred when caring for people with cf. use of commercially available antimicrobial soaps in the home is not recommended, as these products do not provide any additional benefits compared with nonantibacterial soaps. the hands of healthcare personnel caring for people with cf and the hands of people with cf and their families can become contaminated with cf pathogens due to contact with infectious respiratory secretions. in a study conducted in cf clinics, the hand contamination rate among people with cf (n p participants) was . %, and, in addition, . % of participants without initial detection of cf pathogens con- taminated their hands during clinic visits. fingernails are of special concern, as the subungual areas of hands harbor high concentrations of bacteria. compared with healthcare personnel with natural nails, those wearing artificial nails were more likely to harbor gram-negative organisms on their fingertips before and after hand hy- giene. - artificial nails worn by healthcare personnel have been associated with outbreaks of infectious agents, including p. aeruginosa. - while no specific studies of the role played by artificial nails in the transmission of pathogens in cf have been performed, the clinical experience in icus and other healthcare settings can be applied to cf. thus, healthcare personnel who provide care to people with cf should not wear artificial nails. while studies have not evaluated the risk of artificial nails worn by people with cf or their families, it is prudent to avoid this potential risk factor for acquisition of gram-negative pathogens. iv.d. personal protective equipment (ppe) ppe are wearable barriers intended to protect healthcare per- sonnel from exposure to or contact with infectious agents. ppe includes gloves, gowns, facemasks, respirators, and eye protection (eg, goggles and face shields). healthcare person- nel can wear ppe alone or in combination, based on the anticipated patient interaction and potential for exposure to blood or body fluids or for exposure to known or suspected pathogens. ppe is subject to fda regulations under the device provisions of the federal food, drug, and cosmetic act. cdc/hicpac recommendations for standard and transmis- sion-based precautions provide detailed indications for ppe use. a summary of the recommended use of ppe by health- care personnel, people with cf, and their families is provided in table . iv.d. . gowns and gloves healthcare personnel. as per cdc recommendations, healthcare personnel wear gowns to protect their skin from contact with blood and body fluids and to prevent soiling or contamination of their clothing. clothing worn by healthcare personnel can be contaminated with mdros, including mrsa, vre, and gram-negative bacilli. - as per cdc rec- ommendations, healthcare personnel wear gloves for the fol- lowing reasons: ( ) to prevent possible contact with blood or body fluids, mucous membranes, nonintact skin, or other potentially infectious materials; ( ) to prevent transmission of pathogens transmitted by the contact route when having direct contact with patients colonized or infected with such pathogens (eg, vre, mrsa, or rsv); or ( ) when handling or touching visibly or potentially contaminated environmen- tal surfaces and patient care equipment. gloves worn by healthcare personnel reduce the transmission of viral and bacterial pathogens but do not replace hand hygiene—they are worn in addition to the practice of hand hygiene. - for contact precautions, the cdc recommends that health- care personnel don both gown and gloves on room entry for downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s table . use of personal protective equipment by healthcare personnel, people with cystic fibrosis (cf), and families healthcare personnel people with cf family members without cf gowns wear when caring for all people with cf, per contact precautions and per standard precautions not recommended perform hand hygiene as described in table not recommended routinely use as defined in local hospital pol- icy when visiting hospitalized patients perform hand hygiene as described in table gloves wear when caring for all people with cf, per contact precautions and per standard precautions not recommended perform hand hygiene as described in table not recommended routinely use as defined in local hospital pol- icy when visiting hospitalized patients perform hand hygiene as described in table masks wear surgical (also referred to as isolation or procedure) mask when caring for patients under droplet precautions wear face shield when splashes are likely to occur as per standard precautions wear surgical (also referred to as isolation or procedure) mask when in common areas in health- care settings (eg, corridors, wait- ing areas, radiology) do not wear when in exam room, in hospital room, or when per- forming pulmonary function tests not recommended in cf clinics use as defined by local hospital pol- icy when visiting hospitalized patients respirator or papra wear n- respirator or papr when caring for patients under airborne precautions not recommended wear mask as described above wear n- to enter room for sus- pected or confirmed tuberculosis according to hospital policy a powered air-purifying respirators (paprs) are recommended for individuals who are unable to tolerate or pass a fit test for an n- respirator. all contacts with the patient and/or environmental surfaces and patient care equipment that could be potentially con- taminated. for standard precautions, an isolation gown is worn only if there is anticipated contact with blood or body fluids. however, application of appropriate standard precau- tions may be inconsistent, because healthcare personnel can- not always anticipate potential contact with infectious body fluids and because ppe are not always readily available. all healthcare personnel should wear gowns and gloves when caring for all people with cf regardless of respiratory tract culture results. the rationale for the universal use of gowns and gloves by healthcare personnel caring for people with cf is that direct and indirect contact with respiratory secretions that may contain transmissible pathogens is likely to occur, including through contact with contaminated en- vironmental surfaces and equipment. additional support for this practice is derived from a study in adult medical and surgical icus that demonstrated decreased acquisition of mrsa in units where healthcare personnel wore gowns and gloves for all patient contacts and when entering any patient room. people with cf and families/visitors. there are no data to support a recommendation for people with cf or their families to wear gowns or gloves in healthcare or nonhealth- care settings to prevent the transmission or acquisition of potential pathogens. however, some high-risk units in hos- pitals may choose to require visitors to wear gowns and gloves. iv.d. . masks, eye protection, and respirators healthcare personnel. as per the cdc recommendations, facemasks are loose-fitting disposable ppe worn by healthcare personnel when caring for patients with known or suspected infections that require droplet precautions (eg, influenza, per- tussis, or adenovirus infection). masks, in combination with eye protection, are worn to protect healthcare personnel during procedures and patient care activities likely to generate splashes or sprays of blood, body fluids, or secretions (eg, suctioning, intubation, and operative procedures). these types of masks may be referred to as surgical, procedure, or isolation masks. all facemasks are single use and should be changed whenever damaged, soiled, or damp or if breathing through the mask becomes difficult. while cf pathogens are transmitted patient to patient by the droplet route, such pathogens are not trans- mitted to healthcare personnel. thus, healthcare personnel are not required to wear a mask routinely when caring for people with cf unless there is an infection with a known or suspected pathogen that requires droplet precautions or according to standard precautions as described above. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i n f e c t i o n c o n t r o l a n d h o s p i t a l e p i d e m i o l o g y a u g u s t , v o l . , n o . s a respirator is a tight-fitting device worn on the face, cov- ering at least the nose and mouth, to reduce the wearer’s risk of inhaling droplet nuclei containing infectious agents. the occupational safety and health administration sets regula- tory standards for respirator use. healthcare personnel who may have exposure to airborne infectious agents are medically evaluated and fit-tested to wear a disposable respirator, usu- ally one designated n , which means that while breathing through it the filter removes % of airborne particles. healthcare personnel who cannot wear or be adequately fitted with an n respirator may use a papr with a disposable hood. respirators are worn by all healthcare personnel en- tering the room of a patient under airborne infection isolation for pulmonary tb. , respirators are also worn when per- forming an aerosol-generating procedure (eg, open suction- ing, emergency intubation, or bronchoscopy) on a patient with known or suspected influenza. healthcare personnel who will be using an n respirator should be fit-tested an- nually to ensure that the proper size is used. people with cf and families/visitors. masks prevent ill individuals from spreading infectious respiratory droplets. for people entering healthcare settings, availability of face- masks is an essential component of respiratory hygiene and cough etiquette, particularly during times of seasonal com- munity-onset respiratory infections (eg, influenza). masks are available in adult and child sizes (designed for ages – years). as described above (section ii ), experimental and clinical data have demonstrated the generation of infectious droplets by people with cf; these studies confirm the poten- tial for transmission of cf pathogens to others with cf by the droplet route. , - , - thus, to prevent transmission by the droplet route people with cf should routinely don a facemask of appropriate size when entering healthcare settings where they are likely to encounter others with cf. such set- tings include the common areas of the cf clinic, when leaving their hospital room, or when leaving the clinic exam room. however, it is possible that very young children, people in respiratory distress, and people exercising may not be able to tolerate a mask. such individuals should be instructed to practice other components of respiratory hygiene (ie, cough into a tissue, discard the tissue, perform hand hygiene after coughing, etc) and remain at least feet from others with cf. respirators are not recommended routinely for patient use, but the cdc recommends that visitors wear respirators when entering the room of a patient under airborne infection iso- lation precautions with suspected or confirmed pulmonary tb. iv.e. environmental cleaning and disinfection iv.e. . overview many studies published in the past decade have demonstrated that contaminated environmental surfaces play a role in the transmission of healthcare-associated pathogens (eg, mrsa, vre, c. difficile, and p. aeruginosa) and that improved en- vironmental cleaning and disinfection are effective in reduc- ing the transmission of such pathogens. - , , the im- portance of the principles of environmental contamination and cleaning and disinfection can be extrapolated to the cf clinic where surface contamination has been studied exten- sively. - , as all people with cf may harbor transmissible pathogens or are at risk of acquiring such pathogens, envi- ronmental cleaning and disinfection practices should be im- plemented when caring for all people with cf. four strategies can reduce transmission from contaminated healthcare surfaces and equipment: ( ) improve cleaning and disinfection of the rooms of patients known to carry health- care-associated pathogens after discharge (ie, terminal clean- ing); ( ) disinfect high-touch surfaces in isolation rooms daily; ( ) disinfect portable equipment between patients or use disposable or dedicated equipment in isolation rooms; and ( ) expand efforts to improve cleaning and disinfection of all rooms if there is concern that patients harboring mdros are not identified or are identified after long delays. automatic disinfection devices (eg, hydrogen peroxide vapor and ultraviolet cleaning) are promising but require additional studies before recommendations for their routine use can be made. , contamination of surfaces most often results from the fail- ure to clean rather than faulty cleaning methods or ineffective products, which supports the importance of education and monitoring adherence. standardization of cleaning and dis- infecting methods, utilizing educational programs, and check- lists and audits can all improve effectiveness. three types of audits after cleaning and disinfecting have been described: ( ) direct observation, ( ) use of fluorescein powder or atp detection methods to demonstrate the removal of potentially infectious pathogens, and ( ) bacterial cultures of surfaces. objective measures utilizing fluorescein dye or atp detection are the most effective and practical to implement. , since most ip&c departments are currently engaged in monitoring environmental cleaning, coordination between the cf care team and the ip&c team is advised. strategies to enhance the effectiveness of environmental cleaning in both ambu- latory and inpatient areas are provided in table . checklists and other tools for cleaning and additional background in- formation are available on the cdc website. iv.e. . healthcare facilities: respiratory therapy, nebulizers, and diagnostic equipment devices used for respiratory therapy (eg, nebulizers) or for diagnostic evaluation (eg, bronchoscopes and spirometers) are potential reservoirs or vehicles for the transmission of infectious organisms. routes of transmission may be from a contaminated device to a patient, from a patient to a patient via a contaminated device, or from one body site to the downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s table . strategies to enhance the effectiveness of environmental cleaning in ambulatory and inpatient settings for people with cystic fibrosis (cf) strategies elements monitoring adherence type of programs level (basic) . ip&c program coordinated with evs with joint definition of institutional expectations and clearly stated responsibilities . structured education of evs staff that includes techniques of cleaning and disinfection and plans for monitoring . routine reporting to ip&c and facility leadership . development of measures for monitoring and identification of individuals to perform auditing and feedback . interventions to optimize thoroughness of termi- nal room cleaning to be a standing agenda item on the ip&c or quality committee agenda . documentation of consideration of moving to level program in committee minutes level (advanced) more comprehensive implementation of above elements more comprehensive implementation of above elements checklists develop checklists for cleaning and disinfecting each of the following: a. cf clinic exam room after each patient b. pft machines after each patient c. common areas of cf clinic daily d. ipads, computers, medical equipment e. equipment in radiology area or other common procedure areas f. restrooms g. inpatient rooms observations atpase strips fluorescent marker (eg, glogerm) specialized training educate cf clinic staff and evs staff about ip&c for cf appropriate educational level testing to ensure un- derstanding of rationale for recommendations note. see the centers for disease control and prevention website for downloadable tools and informational brochures (http://www .cdc.gov/hai/toolkits/evaluating-environmental-cleaning.html). evs, environmental services; ip&c, infection prevention and control; pft, pulmonary function test. respiratory tract of the same patient. reservoirs of aerosol- producing devices (eg, nebulizers) are subject to overgrowth of bacteria that can be aerosolized during device use. al- though a patient’s own respiratory flora usually contaminate nebulizers, it is prudent not to introduce those microorgan- isms into the lower respiratory tract during aerosol treat- ments. thus, processes for proper cleaning and sterilization or disinfection of reusable equipment are essential compo- nents of a program to prevent infections of people with cf. evidence-based guidelines for the care of bronchoscopes and other semicritical items have been published, and the latest developments in reprocessing semicritical items were recently reviewed. hospitals must follow these recommendations. several studies of infections that occurred in association with contaminated respiratory therapy and diagnostic equip- ment have provided important insights into preventing such infections. these include the following: ( ) strict adherence to aseptic technique is important. ( ) proper training of per- sonnel responsible for reprocessing equipment is important, including demonstration of competency initially and then at least annually, as is consistent adherence to reprocessing guidelines. ( ) single-dose medication vials are always pre- ferred, due to the risk of contamination , , , (if multi- dose medication vials must be used, then the manufacturer’s directions for handling, dispensing, and storing must be fol- lowed precisely to prevent contamination and the transmis- sion of potential pathogens). ( ) tap water may be used for cleaning nebulizers and other respiratory therapy equipment, but sterile water or water processed by filtration (filter size of less than or equal to . microns) must be used in the final rinse because tap water and distilled water may be con- taminated with cf pathogens. sterile water or properly filtered water is recommended for filling respiratory therapy equipment reservoirs (eg, humidifiers), and sterile saline is recommended for sinus rinses. ( ) equipment should be cleaned before disinfection or sterilization to ensure that the sterilization process is maximally effective. ( ) air-drying equipment after it has been cleaned and disinfected is an essential step prior to storage because items that remain wet provide favorable conditions for bacterial growth. , bacterial contamination of nebulizers used during hospi- talizations has been demonstrated. however, methods of caring for nebulizers in the hospital setting have been widely disparate - and have included changing nebulizers every downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. http://www.cdc.gov/hai/toolkits/evaluating-environmental-cleaning.html http://www.cdc.gov/hai/toolkits/evaluating-environmental-cleaning.html https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h o sp ita l e p ide mi ol ogy a u gu st , v o l. , n o . s – days; changing mouthpieces after each use; and rinsing them with sterile water, drying them, and then placing them in a plastic bag between uses. in the preparation of recom- mendations for this guideline, discrepancies in published guidelines were noted. furthermore, there are limited data to inform recommen- dations for care of disposable nebulizers used in the hospital. the care of nebulizers was addressed in a study of people with cf admitted for pulmonary exacerbations who received aerosolized bronchodilator therapy times daily. the neb- ulizers were not cleaned or disinfected between treatments but were replaced after hours. cultures of the residual fluid inside the nebulizer cup were obtained before admin- istering successive treatments and prior to discarding the neb- ulizer after hours of use. none of the nebulizer samples obtained grew cf pathogens. this study did not address the use of disposable nebulizers for longer than hours. important principles for the care of disposable nebulizers used in the hospital for individuals with cf are as follows: ( ) nebulizers are for use in a single patient only; ( ) when handling the nebulizer and dispensing the medications, asep- tic technique should be followed; ( ) nebulizers should be handled away from sinks to prevent contamination; ( ) only sterile water should be used for rinsing nebulizers; ( ) after each use, residual volume should be rinsed out with sterile water, and masks/mouthpieces should be wiped with an al- cohol pad; and ( ) nebulizer contamination between uses can be avoided by not placing nebulizers in line with the ventilator circuit, thereby exposing the nebulizer to tubing condensa- tion. the safety of storing moist nebulizers in plastic bags is unknown. durable, nondisposable nebulizers used in the hos- pital can be processed in a central sterilization area according to the methods described below for home use (section iv.e. ) if they can be returned to the same patient in time for their next treatment. iv.e. . nonhealthcare settings: nebulizers although no published reports have definitively proven that cf pathogens were acquired from contaminated equipment during home therapy, bacterial contamination of home neb- ulizers of people with cf has been documented in several studies. - additionally, cleaning and drying home respira- tory therapy equipment between uses was associated with a decreased risk of acquiring b. cepacia complex. in a study of experimental contamination of nebulizers, hot water and soap effectively removed most inoculated bacteria. however, these experimental conditions may not mimic true use by people with cf, and, as described above, potential pathogens from environmental sources (eg, tap water) may contaminate equip- ment inadvertently and thereby cause infection. respiratory care equipment used in the home (eg, non- disposable nebulizers) is durable and designed for long-term use. thus, to prevent infections caused by contaminated re- spiratory therapy equipment used in the home, equipment should be cleaned, disinfected, and air-dried after each treat- ment. ( ) equipment must be cleaned well to remove all organic and inorganic debris before disinfection. after clean- ing with dish soap and water, disinfect either by immersion in cold disinfectants or by heat, if permissible by the man- ufacturer. dried or baked debris on equipment makes re- moval more difficult, and the disinfection process becomes less effective or even ineffective. , ( ) equipment must be disinfected by either heat or cold disinfectant methods, as permissible by the manufacturer. heat methods include im- mersion in continuously boiling water for minutes; washing in a dishwasher if the equipment is dishwasher safe and the water achieves a temperature greater than �f ( �c) for minutes; use of a microwave oven if the equipment is microwave safe and can be placed in a bowl of water in a home microwave oven ( . ghz) for minutes; - or use of electric steam sterilizer (eg, baby bottle sterilizer). cold methods include soaking in %– % ethyl or isopropyl al- cohol for minutes (avoid use near open flames) or in % hydrogen peroxide for minutes. , these preparations will lose activity over time, and the optimal storage time is unknown. vinegar (acetic acid) is not recommended because it has inadequate activity against some potential cf pathogens (eg, s. aureus). , , bleach is no longer recommended be- cause a . % hypochlorite solution did not reduce the num- ber of cf pathogens on home nebulizers. benzyl ammo- nium chloride (control iii) is also not recommended for use because it has a narrow spectrum of activity and is slow in action. additionally, outbreaks have been related to contam- ination of this agent. ( ) equipment should be rinsed after use of the cold disinfectant with either sterile water or filtered (less than or equal to . microns) water, as described above. sterile water can be prepared by boiling tap water and achiev- ing a rolling boil for minutes. sterile water can become contaminated after use and/or storage, but the frequency of this is unknown. boiling water immediately before use min- imizes this possibility. distilled water is not recommended for cleaning or rinsing respiratory therapy equipment since contamination with b. cepacia complex can occur during the manufacturing process. iv.f. strategies for cf clinics several epidemiologic studies have provided evidence for po- tential transmission of cf pathogens in cf clinics, as de- scribed above (section iii.a). while the risk of transmission in cf clinics cannot be quantified, the health benefits of cf clinics clearly outweigh the risks of acquisition of cf path- ogens. the ip&c recommendations for cf clinics are detailed below and in table . iv.f. . cohort segregation versus all-patient separation many cf centers throughout the world practice cohort seg- regation, whereby separate clinic sessions are held for people with cf who are infected with the same pathogen. for ex- downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s ample, there is a separate clinic for people infected with mrsa or a separate clinic for people infected with an epi- demic strain of p. aeruginosa. , , , , , - while cohort segregation has been associated with a reduced incidence of les of p. aeruginosa , , , and a decrease in the incidence and prevalence of burkholderia spp. in the united states, additional ip&c practices were also implemented at the same time. concurrent practices included recommending no so- cialization among people with cf in nonhealthcare settings, alternatives to common waiting rooms, removal of common toys and books, an emphasis on hand hygiene, single-use mouthpieces for pft equipment, and aggressive eradication protocols for p. aeruginosa. , - therefore, it is difficult to conclude which ip&c practices were most important for suc- cessfully decreasing transmission. furthermore, maintaining cohort segregation is difficult, as people with cf may ( ) harbor more than pathogen, ( ) need urgent care, or ( ) have newly identified pathogens that could change their cohort status. additionally, respira- tory tract cultures do not always accurately detect cf path- ogens, and thus all people with cf could harbor potentially transmissible pathogens. specimens obtained from the upper airway lack sensitivity and specificity for the lower airway. despite standardized protocols for processing cf specimens, potential pathogens may escape detection due to low organ- ism burden, overgrowth by other species, or misidentifica- tion. , genotyping studies have also demonstrated the po- tential for replacement of an initial infecting burkholderia strain with another strain (ie, superinfection) when cf pa- tients have been segregated into groups on the basis of in- fection status. , many clinicians in centers implementing cohort segrega- tion have noted the cost, stigmatization, and psychosocial stresses associated with this practice and emphasize that co- hort segregation should be considered only when there is strong epidemiologic and genotypic evidence for transmission in the cf clinic. thus, cohort segregation could be imple- mented on a case-by-case basis if ongoing transmission of a cf pathogen occurs despite implementation of the ip&c rec- ommendations detailed in this guideline. to date, studies have not compared the impact of cohort segregation versus separation of all patients with cf from each other. given the lack of definitive support for cohort segre- gation and the complexity and shortcomings of implementing cohort segregation, recommendations include separation of all people with cf, regardless of their respiratory tract culture results, and practicing the ip&c recommendations detailed in this guideline. additionally, given the adverse clinical impact of many cf pathogens, including mrsa, epidemic strains of p. aeruginosa, and burkholderia spp. (section iii.a), and the insensitivity of respiratory tract cultures to accurately detect all cf pathogens, maintaining a separate cohort for burkholderia- infected individuals is not recommended. iv.f. . cf clinic logistics as previously described, infectious droplets can travel feet ( meters; section ii.c). thus, all people with cf (unless they live in the same household) should be separated by at least feet ( meters) from others with cf to reduce the risk of droplet transmission. , strategies to schedule and man- age people with cf in clinics must include minimizing wait- ing time in a common reception area or waiting room. such strategies could include placement of the individual with cf in an exam room on arrival, use of a pager system if a room is unavailable, a staggered clinic schedule, portable pulmo- nary function testing, and rotating cf team members into the exam room (table ). iv.f. . hand hygiene people with cf and their accompanying family members should perform hand hygiene on entering and leaving a cf clinic as well as throughout the clinic visit, as contact with respiratory secretions can occur during coughing, sneezing, or contact with contaminated environmental surfaces or equipment. hand hygiene recommendations for healthcare personnel, people with cf, and their families are described in section iv.c and in table . to promote hand hygiene, all ambulatory areas should have appropriate supplies for hand hygiene, including conveniently placed alcohol-based hand rub in the entryway into the cf clinic, the waiting room, exam rooms, pft laboratories, and restrooms. , , fur- thermore, when hand hygiene is not witnessed, people with cf and their families should be empowered to remind health- care personnel to perform hand hygiene. iv.f. . mask use by people with cf in the infection control guideline for cf, the routine use of masks by people with cf was an unresolved issue be- cause of a lack of supporting evidence that masks prevented transmission of cf pathogens. in a survey of ip&c practices conducted in cf centers in the united states in , some centers ( / [ %]) used masks in the ambulatory setting, but the benefits of this practice had not been studied. how- ever, recent studies have found infectious droplets in the air of cf clinics (section iii ). this supports the use of masks by people with cf to both contain infectious droplets and prevent acquisition of potential pathogens. , thus, all people with cf should wear a mask of appropriate size in healthcare facilities to reduce droplet transmission and acquisition of cf pathogens. mask use by people with cf is consistent with cdc recommendations to prevent droplet transmission of pathogens by infected patients and to prevent the acquisition of potential pathogens by susceptible individ- uals. masks should be worn throughout the healthcare facility unless the individual with cf is in an exam room or per- forming pfts. to facilitate mask use, all cf clinics should provide masks of different sizes on entry into the clinic. some centers have chosen to implement mask use via respiratory downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s t a b l e . in fe ct io n p re ve n ti o n an d c o n tr o l st ra te gi es fo r c ys ti c f ib ro si s (c f ) c li n ic s to m in im iz e th e r is k o f t ra n sm is si o n o f p o te n ti al p at h o ge n s w it h in f ee t ( m et er s) sp ec ifi c st ra te gi es c o m m en ts sc h ed u li n g st ag ge r cl in ic sc h ed u le p la ce p at ie n t in ex am ro o m im m ed ia te ly a ss es s sp ac e av ai la b le an d p at ie n t n ee d s r eg is tr at io n ar ea in d iv id u al s w it h c f p u t o n m as ks ei th er o n en tr y in to th e h o sp it al o r o n en tr y in to th e cl in ic ar ea m ai n ta in a d is ta n ce o f at le as t fe et ( m et er s) b et w ee n al l p eo p le w it h c f p ro vi d e h an d h yg ie n e su p p li es p ro vi d e ti ss u es an d co ve re d re ce p ta cl es p ro vi d e m as ks o f d if fe re n t si ze s h an d h yg ie n e p er fo rm ed b y p eo p le w it h c f an d fa m il ie s w h en en te ri n g an d le av in g c f cl in ic c o n si d er lo gi st ic s o f o b ta in in g m as k o n en tr y in to th e h o sp it al b u il d in g w ai ti n g ro o m c o n ti n u e st ra te gi es u se d in re gi st ra ti o n ar ea “n o w ai ti n g in w ai ti n g ro o m ” c al l p at ie n ts ’ ce ll p h o n es w h en ex am ro o m av ai la b le n o co m m o n to ys o r co m p u te rs in st ru ct p at ie n ts an d fa m il ie s to b ri n g th ei r o w n to ys , b o o k s, ip o d s, ip ad s, et c a d vi se p eo p le w it h c f, if n ec es sa ry , to w ai t in an o th er id en ti fi ed lo ca ti o n w h er e n o o th er s w it h c f w il l b e p re se n t c o m m o n ar ea s n o co n gr eg at in g in h al lw ay s, la b o ra to ri es , ra d io lo gy , et c a d vi se in d iv id u al s w it h c f to w ea r m as k in ca fe te ri a, as o th er s w it h c f m ay b e p re se n t e xa m ro o m ac ti vi ti es o b ta in h ei gh ts an d w ei gh ts in ex am ro o m s p ro vi d e h an d h yg ie n e p ro d u ct s in ex am ro o m r o ta te in te rd is ci p li n ar y st af f th ro u gh ex am ro o m s e n co u ra ge p eo p le w it h c f an d fa m il ie s to o b se rv e st af f p er fo rm h an d h yg ie n e a ll st af f m em b er s d o n go w n s an d gl o ve s ei th er b ef o re o r o n en tr y in to ex am ro o m d is in fe ct st et h o sc o p es o r o th er eq u ip m en t th at is sh ar ed am o n g p at ie n ts b y m ea n s o f al co h o l sw ab s, p er m an u fa ct u re r’ s in st ru ct io n s, o r ac co rd in g to lo ca l h o sp it al p o li cy p eo p le w it h c f d o n o t n ee d to w ea r a m as k in ex am ro o m p eo p le w it h c f an d fa m il y m em b er s sh o u ld p er fo rm h an d h y- gi en e b ef o re en te ri n g an d af te r le av in g th e ex am ro o m p eo p le w it h c f sh o u ld p er fo rm h an d h yg ie n e af te r co u gh in g o r h av in g co n ta ct w it h re sp ir at o ry tr ac t se cr et io n s (e g, af te r p u l- m o n ar y fu n ct io n te st in g o r o b ta in in g cu lt u re , ac ci d en ta l co n - ta m in at io n o f h an d s w h en co u gh in g) e m p o w er p eo p le w it h c f an d fa m il ie s to re m in d h ea lt h ca re p er - so n n el to p er fo rm h an d h yg ie n e o r u se go w n s an d gl o ve s (c an re m in d ve rb al ly o r w it h n o n ve rb al cu es ) downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s p f t s p ro vi d e h an d h yg ie n e p ro d u ct s in p f t la b s a ll st af f d o n go w n s an d gl o ve s p ri o r to p er fo rm in g p f t s u se o n e o f th e fo ll o w in g o p ti o n s: . p er fo rm in ex am ro o m at st ar t o f cl in ic vi si t . p er fo rm in p f t la b , al lo w m in u te s to el ap se b ef o re n ex t c f p at ie n t en te rs la b . p er fo rm in n eg at iv e p re ss u re ro o m . p er fo rm in ro o m w it h h e pa fi lt er s c le an su rf ac e o f p f t m ac h in es an d o th er h ig h -t o u ch su rf ac es (e g, co m p u te r k ey b o ar d , d o o r h an d le s) af te r ea ch p at ie n t u se d is p o sa b le m o u th p ie ce fo r ea ch p at ie n t p at ie n ts sh o u ld n o t to u ch p f t m ac h in es o r co m p u te rs r es tr o o m s k ee p m as k o n w h en en te ri n g an d u si n g re st ro o m p er fo rm h an d h yg ie n e b ef o re an d af te r u si n g re st ro o m c o n st ru ct io n o f si n gl e- p er so n re st ro o m s p re fe rr ed r es p ir at o ry sp ec im en s o b ta in in ex am ro o m at st ar t o f cl in ic vi si t n o ad d it io n al co m m en ts c li n ic cl ea n in ga e xa m ro o m s sh o u ld b e cl ea n ed an d d is in fe ct ed b y tr ai n ed p er so n n el (e g, m em b er o f c f te am o r en vi ro n m en ta l se rv ic es ) af te r ea ch p at ie n t u si n g a - st ep p ro ce ss an d e pa - re gi st er ed h o sp it al -g ra d e d is in fe ct an t/ d et er ge n t d es ig n ed fo r h ea lt h ca re fa ci li ti es sc h ed u le d ai ly cl ea n in g b y en vi ro n m en ta l se rv ic es o f ex am ro o m s an d co m m o n ar ea s, in cl u d in g re gi st ra ti o n ar ea , w ai ti n g ro o m , p f t la b , si n ks , an d b at h ro o m s in ac co rd an ce w it h lo ca l h o sp it al p o li cy ; in cl u d e au d it s o f cl ea n in g c le an an d d is in fe ct th e fo llo w in g: . h o ri zo n ta l su rf ac es (e g, ex am ta b le s, ch ai rs , d es ks ) . it em s p eo p le w it h c f m ay to u ch (e g, p f t m ac h in es , b lo o d p re ss u re cu ff s) . it em s h ea lt h ca re p er so n n el m ay to u ch (e g, co m p u te r k ey b o ar d s, si n k s) n o t e. e pa , e n vi ro n m en ta l p ro te ct io n a ge n cy ; h e p a , h ig h -e ffi ci en cy p ar ti cu la te ; p f t , p u lm o n ar y fu n ct io n te st . a se e th e c en te rs fo r d is ea se c o n tr o l an d p re ve n ti o n w eb si te fo r d o w n lo ad ab le to o ls an d in fo rm at io n al b ro ch u re s (h tt p :/ /w w w .c d c. go v/ h a i/ to o lk it s/ e va lu at in g- e n vi ro n m en ta l -c le an in g. h tm l) . downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. http://www.cdc.gov/hai/toolkits/evaluating-environmental-cleaning.html http://www.cdc.gov/hai/toolkits/evaluating-environmental-cleaning.html https://www.cambridge.org/core s i nfe cti o n c ont ro l a n d h o sp ita l e p idem i olo gy a u gus t , v o l. , n o . s hygiene stations on entry into the facility. reminders, in- cluding signs in ambulatory settings, can instruct individuals with cf to contain their secretions, that is, to wear a mask, cough into a tissue, immediately discard the soiled tissue into a trash receptacle, and perform hand hygiene after contact with respiratory secretions. , iv.f. . gown and glove use by healthcare personnel gowns and gloves should be worn by all healthcare personnel caring for all people with cf in healthcare settings. the use of gowns and gloves by healthcare personnel in cf clinics is consistent with the principles of contact precautions and stan- dard precautions (section iv.d. ), as all individuals with cf may harbor potentially transmissible pathogens. by wearing gowns and gloves when caring for people with cf, healthcare personnel protect their clothing and hands from possible con- tamination due to direct or indirect contact with respiratory secretions and thus avoid serving as vehicles for the trans- mission of cf pathogens. to facilitate the use of gowns and gloves, all cf clinics must ensure ready availability of gowns and gloves of different sizes in a location convenient to room entry so they can be put on prior to entering the room. they should be removed in the room and discarded in a covered receptacle. furthermore, people with cf and their families should be empowered to remind healthcare personnel to wear appropriate ppe on entry into their rooms. iv.f. . pulmonary function testing pfts often generate coughing and involve the use of common equipment. thus, ip&c practices when performing pfts must be implemented to minimize the transmission of cf pathogens by contact with contaminated equipment and/or by infectious droplets. hand hygiene should be performed by healthcare personnel and people with cf before and after performing pfts to prevent hand contamination by potential pathogens. healthcare personnel performing pfts should wear gowns and gloves (changing these after each patient) to prevent soiling of clothing and hand contamination with po- tential pathogens. droplets can be detected at least feet from people with cf performing pfts, and these droplets clear the air minutes after performing pfts. to minimize exposure to infectious droplets, pfts should be performed using one of the following options: ( ) in the exam room at the beginning of the clinic visit, allowing minutes to elapse between cf patients; ( ) in a negative pressure room (aiir); ( ) in a pft laboratory with hepa filters; or ( ) in a pft laboratory without hepa filters, allowing minutes to elapse between individuals with cf. hepa filters remove . % of particles (more than or equal to . microns in diameter) from the air that passes through the filter. hepa filters are used to protect hemato- poietic stem cell transplant recipients in a protective envi- ronment from mold infections and can be used to prevent the spread of airborne bacterial and viral infections if air is recirculated in aiirs. hepa filters can be located centrally in the air handler that supplies a specific unit or building or may be located at the point of use within a room. hepa filters must have a preventive maintenance program of mon- itoring and replacement in accordance with the manufac- turer’s recommendations to ensure continued filtration ef- ficiency. hepa filters with metal frames are recommended rather than those with wood frames, which can get wet and become contaminated with potential pathogens. the effec- tiveness of a portable hepa unit depends on ( ) room con- figuration, ( ) the amount of furniture and people in the room, ( ) placement of the unit, and ( ) location of the air supply and exhaust registers. portable hepa units should be capable of recirculating all or nearly all of the room air through the hepa filter and should achieve the equivalent of more than or equal to air exchanges per hour. the facility’s engineering department can assist with information regarding air changes. ultraviolet germicidal irradiation (uvgi) has been used as an adjunct air-cleaning measure in healthcare settings to reduce transmission of bacterial and viral infections. uvgi can be used within air handling units to disinfect air prior to recirculation or as upper room air irradiation (ie, lamps suspended from the ceiling or mounted on the wall). imple- mentation of upper room air irradiation requires air mixing between the lower patient care area and the upper room air. there is also concern about the potential for uv light to damage the eyes of people in the rooms. regular maintenance of uvgi systems is required and includes keeping the bulbs free of dust and replacing old bulbs when needed. many experts do not recommend uvgi as a substitute for hepa filtration. iv.f. . environmental practices in cf clinics, there are numerous opportunities for contam- ination of environmental surfaces and equipment, such as exam tables, pft equipment, and high-touch objects (eg, doorknobs). thus, healthcare personnel in cf clinics and pft laboratories must ensure that the equipment and horizontal surfaces that people with cf may touch are cleaned and dis- infected after each cf patient by using a -step process and epa-registered hospital-grade disinfectant/detergent designed for housekeeping. this includes cleaning and disinfecting common equipment used for individuals with cf (eg, steth- oscopes, demonstration equipment for chest physiotherapy, pulse oximeters, and the outside of pft equipment). the same principles of cleaning, disinfecting, and auditing of cleaning presented in section iv.e. and the tools presented in table apply to cf clinics and pft laboratories. envi- ronmental service personnel trained in the principles of cf ip&c should be available during the hours that people with cf are cared for in the ambulatory clinic to assist the cf care team to ensure appropriate environmental cleaning and disinfection. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s use of common items, such as toys, books, pens, and com- puters, should be avoided in cf clinics. instead, patients and families should be encouraged to bring such items with them to the clinic for their own personal use. a recent study ad- dressed the potential of mobile handheld devices (mhds; eg, ipads) to serve as reservoirs for potential pathogens and cre- ated the ipbundle. the ipbundle includes ( ) use of a wa- terproof, nonporous mhd case; ( ) disinfection of the mhd as per institutional policies for noncritical items; ( ) regular disinfection by setting an alarm on the mhd; and ( ) hand hygiene before and after mhd use. iv.f. . use of restrooms in the infection control guideline for cf, use of com- mon restrooms in ambulatory settings was an unresolved is- sue. while no studies have shown acquisition of potential cf pathogens from restrooms, these are common areas in ambulatory settings, including cf clinics. thus, people with cf should wear a mask while using the restroom and should perform hand hygiene before and after using the restroom. education, providing proper epa-registered hospital-grade disinfectant/detergent, and signage describing these practices can facilitate adherence to this recommendation. when new clinic areas are designed, single-person-use restrooms are preferred. iv.g. hospital room placement and transmission- based precautions single-patient rooms with bathrooms that are not shared with other patients are preferred for all non-cf and cf patients who may harbor mdros to reduce the risk of transmission. , for people with cf, it is reasonable for individuals who reside in the same household to share a room. the following types of isolation are relevant when caring for people with cf. contact precautions are intended to prevent direct and indirect transmission of infectious agents between patients, prevent transmission from patients to healthcare personnel, and prevent transmission from healthcare personnel to pa- tients. on the basis of the knowledge that we now have about person-to-person transmission of cf pathogens (section iii.a) and the possibility of a person with cf harboring an undetected pathogen, contact precautions are recommended for all hospitalized people with cf. when caring for patients under contact precautions, all healthcare personnel must put on a gown and gloves on entry into the room and discard the gown and gloves before exiting the room. availability of ppe either outside the room or within the room at the point of entry is necessary to ensure adherence to the recommended use. since bacterial contamination of surfaces and equipment in a patient room can occur, gown and gloves are recom- mended even if healthcare personnel do not intend to touch the patient. medical equipment (eg, stethoscopes or blood pressure cuffs) should be dedicated to the patient while under contact precautions. cleaning and disinfection of surfaces and equipment should be performed according to hospital policy. a surgical (procedure or isolation) mask or face shield should be added according to standard precautions if there is likely to be a splash of respiratory secretions. droplet precautions are intended to protect healthcare per- sonnel from becoming infected by pathogens transmitted by the droplet route (eg, influenza virus, adenovirus, bordetella pertussis, or m. pneumoniae). when caring for patients under droplet precautions, all healthcare personnel must wear a sur- gical (procedure or isolation) mask on entry into the patient room. droplet precautions are recommended only when car- ing for people with cf with suspected or proven infection with pathogens that could cause disease in healthcare per- sonnel and are spread by the droplet route. people with cf who require droplet precautions will also be under contact precautions; therefore, gowns and gloves in addition to a mask will be required on entry into the room. airborne infection isolation is intended to protect health- care personnel, other patients, and visitors from contracting infections transmitted by droplet nuclei (eg, m. tuberculosis, varicella-zoster virus, or measles virus). all healthcare per- sonnel entering an aiir that is housing patients with proven or suspected tb must wear an n respirator or a papr (section iv.d. ). aiirs utilize engineering controls to prevent airborne transmission of infectious agents that remain sus- pended in the air and travel long distances along air currents. aiirs that have been renovated or constructed since must have more than or equal to air exchanges per hour, and those renovated or constructed prior to must have more than or equal to air exchanges per hour. aiirs must be under negative pressure (eg, the direction of the airflow from the corridor is into the room). preferably, the air in an aiir is exhausted to the outside, but it can be recirculated if filtered through a hepa filter. people with cf who are positive for afb for the first time are more likely to have ntm than tb. however, while tb is uncommon in people with cf, it can occur in those who live in geographic locations with tb or with a history of potential risk factors for tb, including exposure to others with tb, foreign birth, or foreign travel to countries with high rates of tb. airborne infection isolation is recommended for people with cf until ntm has been confirmed and m. tuberculosis has been ruled out. however, in consultation with local ip&c staff, the use of aiir can be guided by a risk assessment if the person who is afb positive has no risk factors for tb and lives in a geographic location with a very low incidence of tb. furthermore, if there is evidence within a cf center that ntm are being transmitted by the airborne route, then people infected with ntm should be placed in aiirs whenever they are hospitalized. people with cf who require airborne infection isolation will also be under contact precautions; therefore, gowns and gloves in addition to an n respirator will be required on entry into the room. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i nfe ct i on c ont ro l a n d h o sp ita l e p idem i olo gy a u gu st , v o l. , n o . s iv.h. construction and renovation cdc recommendations for preventing infection by filamen- tous fungi during construction, renovation, remediation, re- pair, and demolition should be followed in all healthcare facilities. cdc recommendations for preventing nosocomial aspergillosis and managing potential outbreaks of aspergillosis should be followed by institutional ip&c departments. , iv.i. nonhealthcare settings applying the ip&c principles developed for healthcare set- tings in nonhealthcare settings is challenging. the informa- tion provided in this section is intended to assist people with cf and their family and friends to make prudent decisions for their activities outside healthcare settings. an ip&c guide- line for individuals residing in ronald mcdonald houses or similar residential facilities is one example of how ip&c in healthcare settings may be adapted to other settings. fam- ilies of children with cf can now expect such facilities to be knowledgeable about the importance of separating people with cf from each other and can expect this accommodation. families should be empowered to request this accommoda- tion if it is not in place. iv.i. . camps and educational retreats in historic descriptions of cf camps or educational overnight retreats involving more than person with cf, many op- portunities for transmission of cf pathogens existed. close contact between individuals with cf was difficult to avoid, and activities causing coughing were common. given the strong evidence of person-to-person spread of cf pathogens in cf camps and educational retreats, people with cf should not participate in these settings with others with cf. , - however, people with cf are encouraged to attend camps and retreats with individuals without cf. iv.i. . indoor events given the risks of person-to-person spread of cf pathogens within healthcare and nonhealthcare settings, the risk of transmission of cf pathogens between people with cf who attend indoor events at the same time is also present. while the risk of transmission of cf pathogens appears to be greater with epidemic strains of specific pathogens (section iii ), the risk cannot be quantified for specific microorganisms. ad- ditionally, the risk of transmission is likely to be higher in small enclosed spaces (eg, in a car or small conference room), but the risk associated with specific indoor events cannot be quantified. furthermore, there are opportunities for individ- uals with cf to have inadvertent contact within indoor event spaces (eg, in elevators, at vendor booths, in hallways, or in restrooms). thus, it is recommended that only person with cf attend indoor events and that accommodations for non- face-to-face contact, such as webcasts or teleconferences, be encouraged. iv.i. . outdoor events many of the concerns related to the transmission of cf path- ogens due to contamination of surfaces or droplet transmis- sion are minimized at outdoor events. however, if more than person with cf attends such an event, they should be sep- arated by at least feet, should avoid congregating in com- mon areas, should avoid participating in common activities (eg, face painting or meals), and should not travel to the event in the same vehicle unless they reside in the same house- hold. some cf centers offer strategies to avoid inadvertent contact, for example, identifying people with cf to one an- other by wearing a colored shirt or a large decorative pin or by providing box meals rather than open buffets. iv.i. . schools the risk of transmission of cf pathogens associated with school if more than child with cf attends the same school is unknown. people with cf and their parents or legal guard- ians are not obligated to disclose the diagnosis of cf or the results of respiratory tract cultures to school personnel. such information must be maintained as confidential medical in- formation unless the person with cf and/or his or her parent or legal guardian choose to make this information known. however, the student with cf whose diagnosis is disclosed will benefit from the disclosure, as school personnel can then be educated about cf and ip&c principles. this educational process can ensure the implementation of ip&c practices that will benefit all students and staff (eg, hand hygiene and re- spiratory hygiene practices). thus, provisions for hand hy- giene and respiratory hygiene must be available for all stu- dents and for school personnel. if more than child with cf attends the same school, disclosure of the diagnosis of cf will allow schools to make recommended accommodations to minimize the risk of transmission of cf pathogens. students with cf and their families should discuss these recommendations with school leadership to ensure that accommodations can be imple- mented within a specific school and then work closely with school personnel to determine how best to implement them. the following accommodations can minimize the risk of transmission of cf pathogens: ( ) students with cf should be placed in separate classrooms. if they must use the same classroom at different times, they should not use the same desk or work station. ( ) students with cf should be assigned different restrooms, encouraged to carry their own water bot- tles, avoid using public water fountains or use different water fountains, and have lockers as far as possible from each other. ( ) students with cf should be scheduled separately for com- mon activities, including lunch, physical education, and re- cess. ( ) students with cf should be assigned to separate offices to report for routine medications or if they become ill while at school. ( ) students with cf should not be ex- cluded from group activities, such as large assemblies or pep rallies. such activities are a crucial part of school life, academic downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s development, and socialization. students with cf should en- ter and leave the communal areas using different routes from one another and sit as far apart as possible. because each school setting is different, strategies may dif- fer from school to school. many of the strategies recom- mended for schools may be applicable to day care centers or university settings as well. additional strategies for schools can be found at the cf foundation’s website (http://www .cff.org). iv.i. . prevention of viral transmission and immunizations strategies to prevent all people (including those with cf) from acquiring respiratory pathogens include ( ) hand hy- giene, ( ) respiratory hygiene, ( ) routine vaccinations, ( ) influenza vaccinations, and, when relevant, ( ) antiviral che- moprophylaxis for influenza (eg, oseltamivir). antiviral treatment for influenza should be initiated as early as possible to shorten the duration of symptoms and reduce influenza complications. antiviral agents are approximately %– % effective in preventing influenza and serve as useful adjuvants to vaccination. people without cf who have acute respiratory illness should avoid close contact with individuals with cf and not share personal items. vaccinations for people with cf. vaccines are critically important for people with cf to maintain their health and minimize the risk of morbidity and mortality from vaccine- preventable illness. the acip has guidance for age-appro- priate vaccination schedules that is updated each year. , , additional updates are published as needed throughout the year. people with cf should receive the same recommended vaccinations as people without cf; many recommended vac- cines prevent respiratory tract infections that could exacerbate cf lung disease, including influenza, pertussis, and pneu- mococcal vaccines. the cf care team should be informed about changes in immunization recommendations. the most recent update affecting people with cf is the expanded use of pneumococcal conjugate vaccine in individuals more than years of age with chronic lung conditions. currently, there are no commercially available vaccines for such cf bacterial pathogens as p. aeruginosa or s. aureus. trials have not found investigational vaccines to be effica- cious. - vaccinations for family members and close contacts of people with cf. vaccination of family members and close contacts of people with cf can help to protect people with cf from vaccine-preventable illnesses. annual influenza vac- cine is recommended for all family members and close con- tacts of people with cf. this is especially important among the close contacts of infants with cf who may be too young to receive some vaccines, particularly influenza vaccine. the term “cocooning” describes this concept and is advocated for pertussis and influenza. for example, women immunized against influenza during pregnancy had fewer respiratory tract illnesses in the months after delivery, and their infants had fewer febrile illnesses. , there are also guidelines for vac- cination of people who are immunocompromised that are applicable to individuals with cf who have undergone trans- plantation and their close contacts. vaccinations for healthcare personnel. recent acip guidelines have expanded recommendations for healthcare personnel. , these recommendations are relevant for the cf care team and include immunization or immunity to mumps, measles, rubella, varicella, pertussis, and hepatitis b as well as annual influenza immunization. v. healthcare personnel with cf more and more people with cf are living longer, productive adult lives. the following findings reported in the cffpr demonstrate the growing need for career counseling for adolescents and young adults: ( ) the median predicted survival in was . years, nearly years longer than the . year median survival reported in ; ( ) % of individuals in the cffpr were years of age or older; and ( ) nearly % of adults with cf were employed ( . % were employed part time, and . % were employed full time). six studies have reported that % of the cf population studied was working and that approximately % of those individuals were working in professional occupations, al- though there was no specific information on healthcare pro- fessions. similarly, a monograph containing general information on cf in the workplace did not specifically address healthcare professions. guidelines for adult cf care programs in the united states, for nurses participating in this care transition in ireland, and a recent study of the health outcomes of adults who transitioned from pediatric to adult care centers did not discuss providing career coun- seling to individuals with cf who were interested in health- care professions. while anecdotal experiences suggest that healthcare pro- fessions have attracted individuals with cf, few published data exist to inform decisions on choosing a career in healthcare. in the united kingdom, a survey of adults with cf conducted in found that . % of respondents worked in healthcare or closely related professions. ten cf associations and prominent cf center directors worldwide were surveyed, and none of the countries responding had a written policy for managing healthcare personnel with cf. a french associ- ation reported that % of adults with cf were working in service fields (eg, education, healthcare, and social care). the relevance of these studies is uncertain; all were conducted prior to the recent era of improved outcomes for adults with cf. there are no published reports of transmission of infec- tious agents between healthcare personnel with cf and their patients. thus, the frequency of such events is likely to be low and goes unrecognized or unreported. thus, current rec- downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. http://www.cff.org http://www.cff.org https://www.cambridge.org/core s i nf ec ti on c ont ro l a n d h osp ita l e p ide mi ol ogy a u gu st , v o l. , n o. s ommendations for healthcare personnel with cf must be based on common sense, prudence, and individual health status. an editorial and a review article recommended the following considerations for an individual with cf selecting a healthcare profession: ( ) the infectious risk to healthcare personnel with cf from healthcare exposures will vary ac- cording to the patient population cared for and the healthcare environment; ( ) the infectious risks to patients from health- care personnel with cf will vary according to the severity of cf disease, frequency of coughing, types of cf pathogens, and the ability of the individual with cf to follow source- containment recommendations; and ( ) individuals with cf should consider the physical challenges and the ability to per- form cf treatments during and after training when selecting a healthcare profession. , the only definite restriction for healthcare personnel with cf is that he or she should not work with patients with cf or other healthcare personnel with cf. with the stricter ip&c practices recommended in this guideline, it will become more challenging for people with cf to work in a healthcare en- vironment where other people with cf receive care. for ex- ample, it is not feasible that healthcare personnel with cf could wear a mask routinely in healthcare settings. in con- trast, such individuals should wear masks as previously de- scribed for all healthcare personnel (section iv.d. ) and when they are in areas frequented by people with cf. family mem- bers of individuals with cf can work in healthcare professions without restrictions. adolescents and young adults interested in healthcare pro- fessions should seek advice from members of their cf care team to learn about lower-risk options and to receive advice based on their own health status. this type of counseling should be incorporated, when relevant, into programs for transition from pediatric to adult cf care. individuals with cf who work in a healthcare profession are encouraged to disclose their diagnosis to their occupa- tional health service to determine the safest work assignment. the occupational health service must comply with health insurance portability and accountability act requirements as relevant. the employment laws that govern the protections and procedures for healthcare personnel with cf include the americans with disabilities act and section of the re- habilitation act as summarized in the infection control guideline for cf. vi. psychosocial and medical impact of transmission-based isolation precautions acknowledging the potential psychosocial and medical im- pact of ip&c recommendations for people with cf, their families, and the cf care team is critical to overcome chal- lenges to implementation and to promote consistent imple- mentation of the recommendations. while few studies have been performed in cf, there are several relevant studies per- formed in other patient populations. studies among non-cf patients. studies have examined the impact of transmission precautions among non-cf pa- tients with mrsa, tb, or sars-cov infection or with cancer. - patients placed under transmission precautions may experience increased anxiety, depression, loneliness, and stress as well as anger and hostility. , compared with con- trol patients, adult patients isolated for mrsa were more likely to have preventable adverse events (eg, falls, ulcers, or fluid and electrolyte abnormalities), to complain about their care, to have fewer vital signs taken, and to have more days without physician progress notes. two systematic reviews similarly concluded that patients under contact precautions had less contact with healthcare personnel; decreased satis- faction with their care; more noninfectious adverse events, including decubitus ulcers and falls; delayed transfer to long- term care facilities; and more symptoms consistent with anx- iety and depression. , inconsistent use of ppe by health- care personnel or the time required to put on ppe was confusing and troubling to patients and increased their anxiety. others found that patients under contact precautions were more likely to have symptoms of depression and anxiety at the time of admission but were not at increased risk of de- veloping depression, anxiety, or negative moods during hos- pitalization. similarly, personal attributes were associated with the development of depression and anxiety rather than the use of isolation precautions. not all the psychosocial effects of isolation precautions are negative. short-term infection prevention measures did not influence patients’ level of anxiety, depression, or quality of life, but such patients had a positive attitude toward the pre- cautions used. some patients felt they had more freedom from ward routines and more control over their own activ- ities. some liked the privacy and quiet, particularly at night. studies among people with cf. parents and children with cf years of age and older were surveyed about their center’s segregation policy, whereby children with cf were provided single rooms when hospitalized and had to remain in their room throughout hospitalization. the majority agreed with the policy and understood that it was intended to maintain the children’s health. most parents felt that the health benefits outweighed the negative impacts, including social isolation. parents worried about boredom, being able to keep their child in the hospital room, and the increased burden of entertaining their child. however, they also ex- pressed relief at not having to worry about cross infection. the primary concerns expressed by the children were bore- dom and isolation. factors that influenced the children’s opinions were level of maturity, stage of development, and their experiences during previous admission(s). following the spread of an epidemic clone of p. aeruginosa, the majority ( %) of parents and children with cf years of age and older ( %) gave favorable responses for the need for cohort segregation, although negative responses were largely from the adolescent age group. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s table . possible strategies to minimize the adverse psychosocial impact of isolation precautions among people with cystic fibrosis (cf) incorporate people with cf and their families into discussion of daily plan of care encourage visits from individuals without cf provide additional activities to help children pass the time (eg, art supplies, board and card games) provide television, dvds, and video games consider animal-assisted therapy enlist visits from child life staff or volunteers provide computer and e-mail access provide written and individualized information about the need for isolation precautions increase psychological support bring familiar items from home allow to leave room (if feasible) accompanied by a trained staff member at least once daily arrange single-patient use of play room with cleaning after individual leaves provide daily schedule of medically related interventions ensure consistent communication with healthcare personnel interventions to minimize the impact of isolation pre- cautions. the cdc recommends that hospitals should an- ticipate and counteract possible anxiety, depression, percep- tions of stigma, reduced contact with healthcare personnel, and other adverse events that may result from isolation pre- cautions. , interventions to improve communication and physical facilities can ameliorate the negative effects; patient satisfaction was highest among isolated patients who were kept informed about their care. providing both written and individualized information with improved communication from staff can increase satisfaction and positive emotions. increasing psychological support is also helpful. investi- gators emphasize that patients in isolation require frequent contact with other people, including visitors and healthcare personnel, to prevent boredom and loneliness. - com- munication can be enhanced by human touch and humor displayed by healthcare personnel, especially by nurses who generally spend more time at the bedside. parents of children with cf emphasized that providing play therapy services, televisions, video games and movies, toys, crayons, and structured daily activities (eg, physiotherapy, school, pet therapy, and exercise) can reduce the impact of isolation. , , , children suggested that access to the in- ternet, mobile phones, and interactive resources and being able to leave their rooms would make isolation more toler- able. physical facilities can also be altered to decrease the impact of isolation. familiar items from home, such as pic- tures or personal belongings, can decrease the impact of iso- lation, as can providing patients with windows that view the ward or the outdoors. , possible strategies to minimize the adverse psychosocial impact of isolation precautions are pro- vided in table . online social networking. online social networking can provide an opportunity for adults and children with cf to communicate with each other about personal issues and to give and receive valuable peer support outside the healthcare setting. cffone has been developed to provide an inter- vention to improve adherence in adolescents with cf via a web-enabled cell phone that provides cf information and social support. however, cf caregivers should recognize both the power and the potential risks of these tools, should face-to-face meetings result from the communication initi- ated by online resources. thus, while ip&c practices serve to protect people with cf from acquiring or spreading pathogens, awareness of the potential adverse effects of isolation should prompt the cf care team, people with cf, and their families to implement strategies designed to alleviate negative effects. this could improve adherence to ip&c practices and improve the quality of healthcare encounters. vii. challenges to implementation of ip&c recommendations challenges experienced by healthcare personnel. potential challenges to implementation of healthcare guidelines include knowledge, attitude, and practice barriers. relevant chal- lenges and potential solutions to enhance implementation of the ip&c in cf guideline are displayed in tables , and . several barriers to implementation of the infection control guideline for cf were identified among healthcare personnel (n p ). these included lack of awareness of the guidelines ( %), lack of familiarity with the recommen- dation to discourage socialization among hospitalized people with cf ( %), disagreement with the recommendation to discourage socialization ( %), and lack of confidence (self- efficacy) that the respondent could discourage socialization ( %). lack of self-efficacy was strongly associated with poor adherence to the recommendation to educate people with cf to perform hand hygiene and to disinfect their neb- ulizers. others have similarly reported that recommendations that require counseling and education of patients are asso- ciated with a lack of self-efficacy by providers. most respondents ( %) caring for individuals with cf believed that implementation of the guideline would improve the health outcomes of their patients. access to a copy of downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core s i n f e c t i o n c o n t r o l a n d h o s p i t a l e p i d e m i o l o g y a u g u s t , v o l . , n o . s table . knowledge, attitudes, and practice barriers related to implementing the infection prevention and control guideline in cystic fibrosis (cf) category, paradigm barrier potential solutions knowledge lack of awareness or familiarity no knowledge of infection prevention and control guideline or no familiarity with specific recommendations easy access to guidelines review recommendations with cf care team and inpa- tient staff lack of education no provision of education to healthcare personnel or to people with cf or families engage people with cf and their families develop easy-to-understand, eye-catching educational handouts/brochures provide education and booster education in age- and language-appropriate form attitudes lack of agreement disagreement with specific recommendations review evidence, provide rationale lack of self-efficacy not confident can practice specific recommendations provide models of best implementation practices and skills workshops identify successful patient models lack of outcome expectancy do not believe recommended practice can improve health outcomes track center-specific and national trends to link adher- ence to outcomes and share with staff, patients, and families inertia of current practice believe recommendations are ineffective or not applicable and reluctant to change familiar practices share quality improvement initiatives and successful in- terventions among cf centers recruit early adaptors, positive deviants practices lack of resources lack of time, money, personnel, space, supplies, equipment, and/or administra- tive support belief that practices are inconvenient, time-consuming, costly engage with infection prevention and control teams provide adequate supplies and equipment at point of care seek administrative support use return demonstrations perform quality improvement initiatives and report out- comes to staff, families and administrators anticipate and monitor for unintended consequences note. modeled after cabana et al and garber et al. the infection control guideline for cf was associated with increased agreement with the recommendations and in- creased self-efficacy. notably, physicians were more likely to have a copy of the guideline than other members of the cf care team. interventions to overcome the lack of self-efficacy could include didactic lectures, practical skills workshops and training, and sharing best practices by early adopters of the recommendations (section iv.b). challenges experienced by people with cf and their fam- ilies. potential challenges related to implementation of the infection control guideline for cf experienced by peo- ple with cf and the parents of children with cf were also explored. among , respondents, % were aware of the guideline. of those aware, % reported that they had never discussed the guideline with their cf care team, and only % reported that they had discussed the guideline more than once. more than discussion with the cf care team was associated with increased knowledge, self-efficacy, and outcome expectancy. this suggests that booster or enhanced education could reduce barriers to implementation of ip&c practices. while % knew that germs could be transmitted person to person, only % and % knew that people with cf should avoid close contact even when not coughing or in the cf clinic, respectively. most respondents were advised to perform hand hygiene ( %), to avoid close contact with others with cf ( %), and to clean their nebulizers ( %). however, fewer were educated about specific practices, such as performing hand hygiene when entering ( %) or leaving ( %) the cf clinic or cleaning their nebulizer after each use ( %). few respondents believed that their health outcomes could be improved by avoiding close contact during hospi- talization ( %) or in the cf clinic ( %). these findings downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core i n fec ti on p rev e n t i on a n d c ont ro l i n c f s table . strategies to enhance implementation of the infection prevention and control guideline among healthcare personnel, people with cystic fibrosis (cf), and families of people with cf strategies for implementing education programs use of the language and level of understanding most appropriate to the audience, including different groups of healthcare personnel, people with cf, and their families provide rationale for recommendations to healthcare personnel, people with cf, and their families identify and utilize early adapters/positive deviants among different groups of healthcare personnel, people with cf, and their families involve patients and families in problem solving and developing educational tools provide education that does not require people with cf being together in the same room (eg, webinars, internet, apps) encourage family members who do not have cf to attend group education sessions distinguish “must dos” from other information provided to guide prudent decision making healthcare personnel, people with cf, and their families can network with other cf centers continually strive to develop innovative methods of education for healthcare personnel, people with cf, and their families and share with others strategies for audit and feedback involve healthcare personnel who will be recipients of feedback in planning the performance feedback program provide audits with immediate feedback and communication of trends in performance to healthcare personnel at regular intervals (eg, quarterly, semiannually, annually) strategies to empower people with cf to advocate for adherence to recommended practices place signage in public areas indicating the importance of promoting patient safety by politely communicating if lapses in ip&c practices are observed provide option for anonymous reporting of lapses provide insights into specific educational content for indi- viduals with cf and their families. enhanced educational materials designed specifically for people with cf and their families exist (http://www.cff.org) but should be expanded by individual centers as needed. r e s e a r c h a g e n d a scv s. aureus . the role of scv s. aureus (and scvs of other species, eg, p. aeruginosa) should continue to be studied to provide evidence for the need to standardize the processing of cf specimens to look for this phenotype. transmission of cf pathogens . future studies should continue to address the frequency of shared strains of cf pathogens, including p. aeruginosa and ntm. this could potentially be accomplished using ref- erence laboratories, such as have been developed for b. cepacia complex. . the routes of transmission of m. abscessus, including the potential for transmission by droplet nuclei, should be further studied. . the role played by specific niches in the natural envi- ronment (eg, natural bodies of water or soil) in the trans- mission of cf pathogens should continue to be studied. defining best ip&c practices . additional studies are needed to describe the imple- mentation and impact of effective ip&c practices in cf cen- ters without epidemic clones or in cf centers that reduced transmission during a recognized outbreak. these should in- clude epidemiologic studies, observational studies, and eth- nographic research. . additional studies should be performed to determine the efficacy of cohort segregation based on pathogen status versus all-patient separation. . vaccination rates, particularly for influenza, obtained for people with cf and healthcare personnel could be used as patient safety and quality measures at cf centers. . criteria should be developed to define a person with cf who had previously been culture positive for a specific path- ogen and is now culture negative for that pathogen to be free of that pathogen. barriers to implementation . the cf community is strongly encouraged to engage the ip&c community in discussions to find strategies to im- plement these recommendations and to overcome barriers to implementation. . additional studies are required to understand the dif- ferences between the perceptions of healthcare personnel and people with cf and families regarding outcome expectancy following implementation of ip&c practices. healthcare personnel with cf . in , healthcare personnel with cf were identified as a group that would benefit from further research. ten years later, that need remains. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. http://www.cff.org https://www.cambridge.org/core s i n f e c t i o n c o n t r o l a n d h o s p i t a l e pi d e m i o l o g y a u g u s t , v o l . , n o . s c o m m i t t e e m e m b e r s ( a l p h a b e t i c a l o r d e r ) rebekah f. brown, md department of pediatrics, vanderbilt university medical center, nashville, tennessee elizabeth a. bryson, rn, msn, ppcn-bc, cs department of pediatrics, akron children’s hospital, akron, ohio mary jo chambers, lcsw, msw department of social work, arkansas children’s hospital, little rock, arkansas veronica s. downer, rn university of michigan hospital, ann arbor, michigan jill fliege, aprn pulmonary division, nebraska medical center, omaha, nebraska leslie a. hazle, ms, rn, cpn, cphq current affiliation: director, clinical operations and per- formance improvement, spectrum health medical group, grand rapids, michigan manu jain, md, ms department of medicine, feinberg school of medicine, north- western university, chicago, illinois john j. lipuma, md department of pediatrics and communicable diseases, uni- versity of michigan medical school, ann arbor, michigan department of epidemiology, university of michigan school of public health, ann arbor, michigan bruce c. marshall, md, mmm medical department, cystic fibrosis foundation, bethesda, maryland catherine o’malley, rrt-nps, as department of pediatrics, ann and robert h. lurie chil- dren’s hospital of chicago, chicago, illinois suzanne r. pattee, jd adult with cystic fibrosis, silver spring, maryland gail potter-bynoe, bs department of infection prevention and control, boston children’s hospital, boston, massachusetts siobhan reid parent karen a. robinson, phd johns hopkins university, baltimore, maryland kathryn a. sabadosa, mph dartmouth institute for health policy and clinical practice, geisel school of medicine at dartmouth, lebanon, new hampshire lisa saiman, md, mph department of pediatrics, columbia university medical cen- ter, new york, new york department of infection prevention and control, newyork- presbyterian hospital, new york, new york h. joel schmidt, md department of pediatrics, children’s hospital of richmond at virginia commonwealth university, richmond, virginia jane d. siegel, md department of pediatrics, university of texas southwestern medical center, dallas, texas children’s medical center, dallas, texas elizabeth tullis, md, frcpc department of medicine, university of toronto, and keenan research centre of li ka shing knowledge institute, st. michael’s hospital, toronto, canada jennifer webber parent david j. weber, md, mph departments of medicine and pediatrics, university of north carolina at chapel hill medical school, chapel hill, north carolina acknowledgments financial support. the cystic fibrosis foundation provided the publication costs for this document. potential conflicts of interest. none of the authors have financial support or conflicts of interest to disclose relevant to this guideline. address correspondence to lisa saiman, md, mph, columbia university, west th street, ph west room , new york, ny (ls @ cumc.columbia.edu). the cystic fibrosis foundation is located at arlington road, be- thesda, md ; phone: - -fightcf; website: http://www.cff.org. presented in part: th annual north american cystic 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http://www.cff.org/uploadedfiles/livingwithcf/inworkplace/cfintheworkplace.pdf http://www.hhs.gov/ocr/privacy/hipaa/understanding/ http://www.hhs.gov/ocr/privacy/hipaa/understanding/ https://www.cambridge.org/core int. j. environ. res. public health , , ; doi: . /ijerph www.mdpi.com/journal/ijerph communication smart environments and social robots for age-friendly integrated care services ionut anghel, tudor cioara *, dorin moldovan, marcel antal, claudia daniela pop, ioan salomie, cristina bianca pop and viorica rozina chifu computer science department, technical university of cluj-napoca, memorandumului , cluj-napoca, romania; ionut.anghel@cs.utcluj.ro (i.a.); dorin.moldovan@cs.utcluj.ro (d.m.); marcel.antal@cs.utcluj.ro (m.a.); claudia.pop@cs.utcluj.ro (c.d.p.); ioan.salomie@cs.utcluj.ro (i.s.); cristina.pop@cs.utcluj.ro (c.b.p.); viorica.chifu@cs.utcluj.ro (v.r.c.) * correspondence: tudor.cioara@cs.utcluj.ro; tel.: + - - - received: april ; accepted: may ; published: may abstract: the world is facing major societal challenges because of an aging population that is putting increasing pressure on the sustainability of care. while demand for care and social services is steadily increasing, the supply is constrained by the decreasing workforce. the development of smart, physical, social and age-friendly environments is identified by world health organization (who) as a key intervention point for enabling older adults, enabling them to remain as much possible in their residences, delay institutionalization, and ultimately, improve quality of life. in this study, we survey smart environments, machine learning and robot assistive technologies that can offer support for the independent living of older adults and provide age-friendly care services. we describe two examples of integrated care services that are using assistive technologies in innovative ways to assess and deliver of timely interventions for polypharmacy management and for social and cognitive activity support in older adults. we describe the architectural views of these services, focusing on details about technology usage, end-user interaction flows and data models that are developed or enhanced to achieve the envisioned objective of healthier, safer, more independent and socially connected older people. keywords: social robots; ambient assisted living; machine learning; older adults care; daily life activities monitoring; technology limitation and acceptance; care services models . introduction according to the world health organization (who) the proportion of people over years will double from % in to % by [ ]. in this context, the world is facing major societal challenges because the aging population is putting increasing pressure on the sustainability of care. first, the demand for care and social services is steadily increasing while the supply is constrained by the decreasing workforce capacity. second, as people grow older, the costs of care rapidly increase—mainly due to chronic diseases and comorbidities management. to address this, who launched a worldwide initiative “age-friendly cities and communities” with a view of transforming and tailoring living spaces and cities to the needs of older adults [ ]. the proposed age-friendly cities model guides the implementation of new services and policies in various domains from communication and information up to housing or community support and health services. the development of such a model was driven by several factors, such as improving the environments in which the older adults live and developing community-oriented policies promoting opportunities for enhancing the quality of life of older adults [ ]. at the same time, recent technological advancements such as ambient intelligence and information and communication int. j. environ. res. public health , , of technology (ict) mediated intervention, have supported the model implementation offering opportunities for older adults to be proactive in addressing age related challenges and co-producers of new services development. in fact, the model checklist of essential features of age-friendly cities provides lots of references to the adoption of new technological solutions [ ]. recent studies seek to extend the age-friendly cites model with the technology enablers needed to make it compatible with the smart and age-friendly ecosystems [ ]. the direction of developing smart houses or indoor environments for older adult care [ ] is identified as a relevant one as it optimally integrates the technology with the domain of housing defined by in the who age-friendly cities model [ ]. in this context the implementation of smart, physical, social and age-friendly environments is a key intervention point for enabling older adults to stay as much possible in their residences and delay their institutionalization. nevertheless, in this case, there is a high risk that older adults may become socially isolated and will not be able to care for themselves. if certain daily life activities (i.e., eat, drink, take medication as planned, move, etc.) are not properly carried out will significantly impact their condition, speeding up the deterioration of their health and wellbeing— especially in case of older adults suffering from comorbidities. however, the recent adoption of virtual personal assistants and/or socially assistive robots is advocated as a potential technological solution that may positively impact the older adults in society. many of their features empower the older adults to remain socially engaged and at the same time they may successfully mediate the delivery of timely healthcare interventions [ ]. social robots may not only support older adults with daily activity, but at the same time they may contribute to emotional wellness by keeping older adults socially engaged and activating social interactions in communities [ ]. moreover, they may not only drive the implementation of new services in various domains defined by who’s age-friendly model in which older adults perceive the social robots as helpful companions, but they also promote the human-to-human interactions. thus, although independent living reduces the demand and costs for care, it can also reduce the quality of care if not supported by innovative ambient assistive living (aal) technologies and socially assistive robots. efforts need to be committed to integrate and further develop such technologies to realize advanced care services for prolonging the autonomy and well-being of older adults. the implementation of technology-enabled supportive intelligent environments may offer opportunities to promote improved and more personalized care services into older age. combined with care functionalities such as remote care support, medical reminders, behavioral monitoring and virtual coaching, they have the potential of delivering the right support to the end-users when help is needed. the combination of activity, safety, social and comfort functionality can lead to an extension of the time spent living in their own home by shifting or postponing parts of in-patient (i.e., care facility services) treatment, therapy and exercise training into the own home; thereby it will directly decrease or delay admissions into a care institution, diminishing the use of professionalized care services and/or lowering the burden of health care services and facilities. in this context, the smart and ’age-friendly’ environments will become fundamental pervasive technologies for supporting older adults care while the social robots may become important intervention tools due to their ability to provide support to older persons and open links with their community and professional caregivers and to cooperate and interact with older adults engaging them in the care process. starting from the above identified challenges, the contribution of this study is twofold:  a survey of smart environments and robot assistive technologies that have the potential of supporting the independent living of older adults at home by implementing age-friendly care services. in this process we identify the challenges in implementing the new care service models, existing technology limitations and its acceptance by the older adults;  a discussion on how these technologies are used for the development of two care services for older adults centered and integrated care polypharmacy management and control of wellbeing decline by social and cognitive activity engagement. int. j. environ. res. public health , , of the study is structured as follows: section reviews existing smart environments and social robots’ technologies for older adult care, section analyses the application of the technology for new integrated care services and finally section presents the conclusions of the review. . smart environments and assistive robots’ technologies review in this section we provide an overview of state-of-the-art assistive technologies focusing on three main directions: objective monitoring using sensors devices, data analysis and machine learning for behavior assessment and finally delivering interventions using social robots. in the end, we discuss for each type of technology the limits, challenges and adoption from the perspective of older adults. . . monitoring daily life activities the development and deployment of sensors and smart devices for monitoring older adults’ activities is a dynamic research and innovation area currently triggered by the advent of big data and machine learning technologies. on top of the monitoring devices, applications are developed for assisting the older adults’ healthcare, improving the social communication and inclusion or for managing various activities targeting to prolong independent living. in [ ] the most important dimensions of older adults’ lifestyle that need to be properly monitored are identified as: the physiological parameters and the body functions, the changes in the daily life activities (dlas) and daily routines, the social factors and the environmental factors. in [ ] and [ ] the data to be monitored and collected for older adults’ support and intervention is classified in behavior, health, occupancy, lifestyle, home automation, environmental and personal safety. similarly, in [ ] the most common data types to be monitored and used in aal systems are identified as: behavioral habit data, physiological information, healthcare information and environmental data. on other dimension, there are several types of sensors which can be used to monitor and analyze different aspects of the older adults’ healthcare and well-being, most frequently being classified in: (a) physical sensors, (b) virtual sensors and (c) logical sensors. physical sensors are the most frequently used type of sensors in collecting data about the older adults’ healthcare and well-being. table presents an overview of various aal physical sensors and the type of monitored data that was identified in the research literature [ ]. these research approaches are classified and discussed below. wearable physical sensors are used to collect the data about (i) the physiological signs of a person (e.g., heart rate, blood pressure or temperature, blood cholesterol, blood oxygen saturation, respiratory rate, blood sugar level, etc.), (ii) the posture, gait and movement, (iii) the social interaction or (iv) the activities performed by a person during a day. all these data are analyzed to assess the health/wellbeing status of a person [ – ], the sleep quality [ – ] and the level of stress and cognitive decline [ – ] or to detect the falls [ ]. currently, the most important wearable sensors that can collect this type of data are embedded into wristbands, smart clothes, smartphones or smartwatches, arm bands or chest straps. monitoring the physiological signs and physical position provides valuable information regarding the health status of a person. some of the main benefits provided by the wearable sensors in monitoring the health status of a person are the following [ ]: (i) allow to continuously monitor the vulnerable patients, (ii) allow the medical specialist to have a better view on the patient’s health issues and to make the most accurate diagnosis and (iii) offers the patients the opportunity to evaluate their health condition and consult a doctor when appropriate. in [ ] the data collected to evaluate the health status of a patient is: physiological signs and physical position. the types of sensors used for collecting the data are airflow sensor, galvanic sensor, body temperature sensor, blood oxygen sensor, electroencephalogram (eeg)/ heart rate sensor and digital accelerometer. an internet of things (iot)-based system for monitoring the health status of cardiovascular disease(cvd) patients consisting of a sensing layer responsible for collecting the physiological signs of the patient (e.g., blood pressure, electrocardiogram (ecg), amount of oxygen in the blood (spo )) and the patient’s location is proposed in [ ]. custom wristbands that integrate specific sensors (i.e., piezoelectret sensor) that can detect heartbeats are also proposed [ ]. the piezoelectret sensor can help detecting int. j. environ. res. public health , , of the pulse waveform, which is similar to the one provided by an electrocardiogram. similarly, arm- wearable ecg sensors are researched for monitoring the heart rate that integrates the main components of an ecg [ ]. the sensor provides two functions, namely a monitoring function in which the signal is acquired and a holter function in which the signal is stored in the internal memory. authors of [ ] develop a smart t-shirt for recording the ecg signals which integrates a set of active electrodes and an ecg portable recorder. the accuracy of ecg signals recorded with the developed device was comparatively evaluated with a standard -lead holter. a system for monitoring in real time the cvd patients’ heart rate, blood pressure and body temperature which of multiple wearable sensors and collects medical information about patients with cvd, is connected to a web portal for displaying the acquired data from patients in [ ]. sleep quality is an important factor for a person’s stage of health because it reduces the risk of developing chronic diseases and mental disorders. most state-of-the-art approaches for monitoring sleep quality focus on comparative analyses and evaluation of the commercial devices available on the market [ , , ], while only some of them present academic research solutions [ , , ]. for example, in [ ] commercial devices for monitoring the sleep quality are analyzed, the up move jawbone (u) and the withings pulse accelerometers (monitor sleep duration, how many times s/he wakes up at night, etc.), the bodymedia sensewear pro armband actigraph (monitors the sleep quality by estimating the sleep duration and efficiency) and the home-polysomnography (collects data about thoracic and abdominal movements, airflow, etc.). similarly, authors of [ ] evaluate five wearable devices for recording the sleep quality, namely the basis health tracker, the misfit shine, the fitbit flex, the withings pulse o and the actiwatch spectrum actigraph. the basis health tracker is an actigraph embedded in a wristwatch, while the misfit shine is a sleep-tracking device provided with a strap to be worn on the hand. the withings pulse o is also a sleep-tracking device worn on the wrist, while the actiwatch spectrum is a wristwatch with an embedded accelerometer. in [ ] the accuracy of a commercial device, namely, fitbit charge , compared to polysomnography, in measuring the sleep and the wake states is analyzed. this device can detect, besides the sleep and wake states, the time spent awake, in light or in deep sleep as well as to track the level of daily activities. in [ ] it is proposed a wearable device for monitoring the abdominal and thoracic respiration that can be used to detect the obstructive sleep apnea by monitoring the breathing status. chest-worn sensors collect data about the posture (during the day or the sleep), the position changes and body acceleration of a person in order to detect the sleeping and the waking periods to detect the quality of the sleep during the night and the time spend by the person in bed [ ]. in [ ] wearable sensors positioned on arms and chest are used to monitor the sleep quality. the sleep quality is evaluated based on the sleep posture and the sleep stages (awake, rapid eye movement (rem) sleep and non-rem sleep cycles). monitoring the level of stress is very important because, on long term, it has a negative impact on the cognitive functions of a person. also, by monitoring the cognitive function, valuable information is obtained that can be used to improve the daily/detect early cognitive decline in the case of older adults. in [ ] the physical attributes (e.g., galvanic skin response and skin temperature, eeg heart rate, respiration rate and voice data) are monitored and collected in order to assess in real time the emotional, physical and mental stress of a person. data are acquired with a set of wearable biosensors integrated in smart clothing and with a microphone. in [ ] a smartwatch which integrates a global positioning system (gps) sensor, an ambient light sensor and an acceleration sensor, is proposed as a solution for monitoring wandering risk for older adults suffering from dementia. the developed smartwatch acquires the following types of data that are used to avoid the risk of the patient losing their way when they experience wandering episodes: the older adult position and the route in which s/he moves that is necessary to identify if the older adult moves outside the area considered to be safe, the sunlight exposure duration and the number of older adult’s steps. in [ ] the benefits of the physical activity on the cognitive functions of the older adults are inferred based on (i) the data (e.g., light/ moderate to vigorous physical activity) collected with an accelerometer and (ii) a set of questionnaires containing information about the cognitive ability of older adults. a platform for monitoring older adults at home in order to detect the early cognitive decline is int. j. environ. res. public health , , of researched in [ ]. it integrates infrared (ir) motion sensors with magnetic contact sensors and sensors for monitoring user computer interactions (e.g., mouse movements, computer usage time, etc.) and uses all the collected data to build the profile of changes in the activities performed by older adults, which are than analyzed in order to detect possible cognitive decline. in the case of fall detection, most approaches from the research literature are based on accelerometers and gyroscopes. accelerometers can provide information about the motion data during daily living activities (i.e., walking, running, stepping and falling), as well as the instability that can appear during these activities and can provide valuable information in predicting the risk of falling during walking [ , ]. usually a wearable sensor feds data to a fall detection algorithm to identify the fall risk within the daily activities of a person [ ]. in [ ] the data about acceleration signals, postural instability and falls are recorded with a tri-axial seismic acceleration sensor placed on a belt while [ ] presents an approach for detecting the fall, based on a smartphone which integrates a tri-axial accelerometer and a tri-axis gyroscope and is used to record the acceleration patterns, in the case of older adults, for the following types of daily activities: sitting, lying, jumping, running, walking and hitting the sensor. a fall monitoring system which integrates a portable sensor that can be placed on the person’s shoulder, waist or foot and a mobile phone is proposed in [ ]. the portable sensor records the data with a triaxis accelerometer, a triaxis gyroscope and a triaxis magnetometer and sends it to the mobile phone. the collected data are used to compute the acceleration and euler angle which are provided as input to a fall detection algorithm. in contrast with wearable sensors that need to be placed on the body of the person, ambient (non-wearable) sensors are positioned in different places of the older adult’s home and are used to collect data regarding the behavior, the occupancy, the lifestyle, the environmental safety and the personal safety of a person. the non-wearable sensors can be used to detect the well-being/health status of a person as well as to monitor the sleep quality. ambient sensors can be used for monitoring the daily living activities performed by older adults as well as their daily routine and to detect behavior changes caused by the deterioration of the health state. in [ ] the data that are monitored and collected in order to evaluate the wellness of the older adult in a controlled environment (i.e., his/her house) are: behavior, occupancy, lifestyle, environmental safety and personal safety. the monitored infrastructure integrates the following types of non-wearable heterogeneous sensing units installed in the older adult’s houses: (i) movement sensors, (ii) electronics and electrical devices monitoring sensors placed on the electrical and electronic appliances, (iii) toilet sensors, (iv) contact sensors to monitor the opening/ closing of a door, office desk or and self-grooming table and (v) force sensors placed on sofa /bed/ armchair to monitor the sleeping or sitting activities. in [ ] the solution proposed for detecting the deviation from the daily activity routine of older adults is based on a non-intrusive monitoring infrastructure consisting of low-cost sensors such as passive infrared (pir) motion detectors and magnetic door contacts sensors located in each rooms of the house. the monitored data contains information about the older adults’ lifestyle and is used to detect unusual activities performed by an older adult in a day or deviations from his previous routine. smart beds as well as cameras are an alternative to the wearable commercial devices for monitoring the sleep quality, beside the polysomnography and the videosomnography that can be used in clinical evaluations. authors of [ ] propose a non-intrusive monitoring infrastructure consisting of pressure sensors embedded in bed which is used for detecting sleep quality. the sleep quality is assessed based on the sleep position and the sleep stages. in [ ] a microbend fiber optic mat embedded in the mattress of the bed is used to monitor the sleep quality. the sleep quality is evaluated based on the following types of data acquired from sensor: sleep duration, movements during the sleep, heart rate, awake stage duration, time spend in bed as well as the respiration rate. similarly, in [ ] a sensor integrating an emfit foil electrode embedded in the mattress of the bed is used to measure the sleep quality. the sleep quality is evaluated based on the movement activity and the heart-rate fluctuations. piezoelectric film sensors can be embedded in the bed mattress to monitor the sleep quality, based on the variation of the heart and respiration rate and the binary actigram [ ]. microsoft kinect camera can be employed to detect the human shape and the body movements and int. j. environ. res. public health , , of a sensor tag that provides information about the sleep environment such as the temperature and humidity [ ], while near-infrared camera can be used to analyze the sleep behavior, based on the collected videos/images [ ]. non-wearable sensors for fall detection approaches that are based on ambient sensors use cameras, infrared sensors, acoustic sensors or force sensors installed in the home environment to detect the fall. in [ ], an approach for detecting the fall that is based on low-cost fall detector that integrates raspberry pi and an universal serial bus (usb) camera and several algorithms (e.g., background subtraction, kalman filtering optical flow) is proposed. the detector is developed as a portable device that can be moved from a room to another of the older adult’s house and can detect the following positions: walking, standing, sitting and falling. similarly, in [ ] is presented a method of detecting the fall in the case of older adults. the method is based on a microsoft kinect sensor for collecting the images combined with an algorithm for background subtraction and an ensemble of decision trees. in [ ] is proposed an approach for detecting the fall in the case of older adults that is based on a ground sensors network consisting of accelerometers and force sensors installed on the tiles from each room of the older adults’ apartment while [ ] proposes a classification method which is able to detect between human fall from non-fall, based on the acoustic waves transmitted on the ground collected with a floor acoustic sensor. a method to detect the fall in the case of older adults which combines acoustic sensors that collect the sound signals of the footsteps performed by older adults during the daily activities and a support vector machine algorithm is used to make distinction between fall and non-fall sounds is proposed in [ ]. authors of [ ] develop a fall detection system that uses a circular array of —microphones to detect the older adult’s fall in real time and sends alerts to the caregivers. wearable sensors can be combined with ambient sensors in complex monitoring infrastructures that can be used to obtain more accurate results in monitoring the heath/well-being status or sleep quality. in [ ] the data that are monitored and collected in order to evaluate the wellness of the older adult in terms of functional and cognitive capacity can be classified in: vital sign, social interaction and physical activity. the monitoring infrastructure consists of a wireless sensor network integrating a collection of wearable and non-wearable heterogeneous sensors. ewall [ ] is a holistic monitoring platform for home, which collects the following type of data in the case of older adults suffering of chronic obstructive pulmonary disease, mild cognitive impairments or others age-related impairments: (i) health data (e.g., spo , pulse, heart rate), (ii) well-being state data (physical activity, sleep, mood), (iii) environmental data (e.g., temperature, luminosity). in [ ] the sleep quality is monitored with a wearable three-axis accelerometer and a pressure sensor installed in bed. the accelerometer is used to determine the sleep pose and the sleep state (e.g., rem sleep and non-rem sleep cycles), while the pressure sensors are used to detect heart/respiration rate. based on the collected data a novel algorithm is develop that is able to detect the sleep quality, based on the number of apneic episodes, the duration of sleep and the depth of sleep. int. j. environ. res. public health , , of table . ambient assistive living (aal) physical sensors and data provided. available aal sensors type of monitored data approaches wearable sensors body temperature sensors, biosensors for monitoring vital signs body temperature, physiological attributes (e.g., heart rate, temperature, blood pressure, respiration rate, etc.) [ – , , ] motion sensors such as accelerometers, gyroscope, magnetometers, passive infrared sensors, gps, gsm, active badge systems movement, indoor/outdoor location, position, posture and gait [ , , , , – , , – ] photosensors, color sensors, acoustic sensors (i.e., microphones), etc. light levels, sound and audio [ , – , ] body sleep sensors sleep levels, patterns, intensity, etc. [ , , , , ] non-wearable sensors touch sensors touch (allow interaction with smartphones and tablets or home appliances) [ – ] force/floor sensors falls and movement (walking, standing, sitting, etc.) [ , , – ] pressure pad sensors surface pressure measurement (e.g., bed pressure mats) [ – , ] video sensors (e.g., various cameras) visual context (e.g., keep track of daily living activities performed by the older adult, locating the older adults in house) [ – ] acoustic sensors fall-detection [ – ] ambient sensors (temperature, appliances, toilet) ambient temperature, usage time duration of an equipment, toilet- usage frequency [ , , , ] contact sensors, magnetic switch open/close the office desk, open/close the tv, open doors, windows, etc. [ , , ] virtual sensors are a source of data coming from software applications or services. for example, it is possible to determine an older adult’s location not only by using tracking systems (physical sensors) but also by using a by browsing an electronic calendar, a travel-booking system, emails etc., for location information. other attributes that can be sensed by virtual sensors include, e.g., the user’s activity by checking for mouse-movement and keyboard input. logical sensors are an extension of the virtual ones and make use of a couple of information sources and combine physical and virtual sensors with additional information from databases or various other sources in order to solve higher tasks. pain care is a healthcare app developed for ios and android device that allows older adults to keep a medical journal in which stores information about the medication that s/he take, specific symptoms/pains or side effects of medicine that could occur during the treatment [ ]. based on this medical journal, the causes of pain and treatment efficacy is estimated. all these data are transmitted to medical specialist that can adjusted the medical treatment according to the patient personal profile and his medical journal. researchers have investigated the benefits of using computer or mobile applications (e.g., memory training application or brain training applications) in maintaining/ improving the cognitive functions of older adults [ – ]. in [ , ] specific smartphone applications for improving the cognitive function of older adults are comparatively analyzed. the attention and the working memory are improved by engaging the older adult in training tasks with different int. j. environ. res. public health , , of difficulty levels for concentration, speed, memory, visual and logic. healthebrain, is another smartphone application in which physical activities are combined with memorizing activities in order to improve the cognitive functions of older adults with and without mild cognitive impairment [ ]. similarly, in [ ] the results of using the cognitive training game in improving the cognitive functions of older adults is analyzed. the game includes a set of tasks to be performed by the older adults which aim to train various cognitive functions of the older adult, such as attention, memory, visuospatial or language function. there are also studies that demonstrate the efficiency of using computer/smartphone applications in dementia treatment. for example, in [ ] three smartphone applications are analyzed: evo which is a cognitive training application that reduces the symptoms of depression, ipst which acts as a psychotherapy for depression and health tips which assists in the treatment control. in addition, in [ ] the effect of playing action video games in increasing the cognitive ability in the case of the people suffering of with dementia is analyzed. [ ] presents sonopa, a framework which combines ambient sensors with social networks to create social connection between older adults, based on their hobbies, localization or activity levels. the activity levels and the number of persons in a house (i.e., the level of occupancy) are determined based on the data collected with pir and visual sensors, while the socialization interaction level of an older adult in a day is computed based on the level of the occupancy of the house and the information collected from the social network (the message communication, the visualized photograph, etc.). in addition, a matching algorithm is proposed that can identify new social connections for the older adults with low social level based on the data collected from sensors and from the social network (i.e., person profile, socialization level, etc.). considering the above, we have mapped the nowadays available sensing devices onto different type of assessments they enact aiming to determine their potential usage as reliable source of data for deciding on robot-based interventions (see table ). table . potential usage of sensors. type of assessment sensors potential usage physiological stress/anxiety level wearable sensors for pulse rate, temperature, blood pressure stress or anxiety detection -> play music as intervention daily life activities assessment sleeping bed pressure sensors sleeping problems detection general activity level motion sensors lack of physical activity -> individual training intervention food intake devices embedded sensors intake problem -> intervention by reminding to eat, drink water, etc. medication intake iot pillbox medication plan adherence problem -> intervention by reminding to take medication according to the prescription plan social interaction physical interaction camera and image processing and voice recognition video-based communication to support mediated connection virtual interaction social network-based monitoring cognitive automatic reminders voice recognition memory stimulation using biography personalized information news/weather feed safety safety assistance fall detection sensors send of alerts/notifications int. j. environ. res. public health , , of . . ml for behavior assessment machine learning (ml) techniques are an important component for building smart environments and associated technologies. using the gathered monitored data, these techniques can be used for identifying and assessing certain situations in the older adults’ behavior, situations that usually require personalized intervention from the caregivers or health professionals [ ]. at the same time, the automatic recognition and classification of various daily life activities has the potential of reducing the costs associated with the healthcare of the older adults significantly, especially in the case of those cognitively challenged. by using sensors and advanced analytics over collected data, it is possible to extract information in real time about the monitored person and thus it is possible to detect anomalies and patterns that may indicate wellbeing, social and cognitive decline as well as healthcare problems that require intervention. in this section we analyzed a selection of representative research articles which consider the application of ml techniques for various cases of behavior assessment for older adults. for each representative research article, the following characteristics are considered: the machine learning techniques used, their advantages and disadvantages and type of behavior assessment targeted. we have identified and classified the most important ml techniques that are used for building such smart aal technologies:  classification techniques—the state-of-the-art literature features several methods based on different types of classifiers for monitored data streams out of which ensemble learning methods are considered the best techniques for the classification of the data streams. there are still a lot of challenges posed by the data streams in the case of the ensemble learning algorithms such as the temporal dependencies [ ], the concept drifts [ ] and the feature drifts [ ] and those challenges may appear especially in the monitoring of the daily living activities that are situation-aware where similar monitored data can correspond to related activities such as ascending stairs or descending stairs;  regression techniques—the application of regression techniques for daily living activities recognition in context-aware aal systems [ ] is challenging because the identification of the activities should be performed after the beginning of the activities as soon as possible. a part of the limitations of the current approaches are the recognition of the activities after they are completed and the training of the models using offline historical data, a machine learning phase that leads to models which cannot predict the ongoing activities in a timely manner;  clustering techniques—the clustering of the data streams should be adaptable due to the fact that the underlying data streams may change and evolve significantly in time, like in the case of data that results from the monitoring of the older adults while they perform different types of daily living activities. in [ ] are addressed in more details challenges regarding the clustering, the labeling and the interpretation of the iot data streams dynamically, challenges that exist especially in those aal systems that monitor the daily behavior of the older adults;  other ml techniques—this category considers techniques such as discovery of association rules, patterns detection, anomalies detection, etc. the abnormal human activities are very diverse [ ] in nature due to a variety of aspects such as the way in which the anomalies are defined, the feature representations of the anomalies and the characteristics of the daily living activities data. the detection of the anomalies using various ml algorithms was approached in the research literature in a few studies such as the one presented in [ ] where the analysis of the anomalies is not considered as the main subject of the study, but in relation with the recognition of the daily living activities, the discovery of the behavioral patterns and the decision support. there are three types of older adult behaviors considered that is usually addressed in the research literature through ml techniques, namely daily activities behavior, agitated and aggressive behavior and medication adherence behavior. assessing the daily activity behavior of the older adults is relevant for the detection of the abnormal situations [ ]. in [ ] the authors propose a generic architecture for the monitoring of the int. j. environ. res. public health , , of activities in smart homes and approach a large variety of ml techniques such as the classification of the activities, the prediction and the reminding of various activities and the detection of the anomalous patterns. however, that review is focused on the basic daily living activities behavior of the older adults and it considers only partially or not at all other types of behavior such as the medication adherence behavior or dementia specific behavior. ml challenges related to the classification of frequent daily living activities (i.e., eating and drinking) are described in [ ]. the authors consider data from three datasets collected using various types of monitoring sensors such as power meter sensors and motion, contact and audio sensors. the tested classifiers were support vector machines (svm), random forest (rf), fisher kernel learning (fkl) and hidden markov model (hmm). a different classification approach in [ ] considers classification techniques for the remote acoustic monitoring of the older adults in aal scenarios of residential scale. the data were collected from wireless acoustic sensors and the decision to trigger or not an alarm is taken after the running of a two-stage ann-based classification process for audio events. one ml usage in aal systems is the prediction of the daily living activities of the older adults [ ] ranging from regression techniques related to the prediction of the co consumed inside a room using an artificial neural network (ann) levenberg–marquardt (lma) prediction model to other ml techniques related to the detection of the daily living activities from data collected by humidity, temperature or microphones [ ]. the authors of [ ] consider a smart aging system for distinguishing the variations from the baseline. the proposed ml method consists of preprocessing, segmentation, feature extraction, classification, pattern recognition and anomaly forecasting. moreover, this approach also considers the medication activity with respect to the food intake activity. however, the performance results are affected by noise that can be generated by faulty sensors or by the presence of a visitor. another approach, [ ], proposes a method based on a deep convolutional neural network (dcnn) in order to classify ten types of activities. even though that approach is based on one of the most preferred solutions for daily living activities monitoring, namely the unobtrusive activity recognition and returns a very high f score for eight out of ten activities that are monitored it may be more expensive in terms of computational resources than other approaches. the recognition of the activities was approached in [ ] using data collected from public available datasets which are characteristic to smart home scenarios. in addition to classical daily living activities such as bathing, sleeping and eating, that approach also considers the medication intake activity. the proposed classifier is a long short-term memory (lstm) model and compared to other existing machine learning models it returns better results while the performance of the approach is affected by various dimensions such as the number of residents, the number and the types of activities and the test days duration. the authors of [ ] propose a fog-based deep learning fall detection system using data collected by a tri- axial accelerometer. the proposed architecture is based on three layers, namely a medical devices layer, a fog layer and a cloud layer. the results presented in that article show that the deep learning methods such as lstm and gate recurrent unit (gru) are better than the classical machine learning methods such as svm and k-nearest neighbors (k-nn) for falls detection. agitated and aggressive behavior is one of the most challenging symptoms of dementia [ ] and its automated detection using sensors is useful for the caregivers that can act quickly in these kinds of situations. in [ ] the authors consider challenges related to the agitated behavior in the case of the people with dementia. the automatic detection of the agitation is approached considering data from various sensors placed around the bodies of the monitored subjects that collect information about the skin temperature, the skin response and the heart rate and that data are further analyzed using a svm classifier. one drawback is that the approach requires the sensors to be placed on the bodies of the monitored older adults. the authors of [ ] consider the application of novel technologies for the early alzheimer disease (ad) detection. some associated symptoms are the aggression, the anxiety, the aberrant motor behavior and the irritability. the data from the subjects was analyzed using an ann with two classes (control subjects and ad), the approach is low cost and it does not have any side effects. related to prediction of the agitative behavior for the patients with dementia an important challenge is overcoming weakly labeled and sparse data [ ]. the goal is to infer proficiently the agitation episodes from data collected by wearable sensors using multiple-instance int. j. environ. res. public health , , of learning (mil) models. however, that data comes only from residential deployments, each with a duration of days. in [ ] the data collected from various sensors is used in order to detect the challenging behaviors in the advanced stages of dementia. k-means clustering was applied in order to cluster the residents in two groups, one group characterized by challenging behavior with more passive features, and the other group characterized by challenging behavior with more active features. however, the possibility to detect the disorientation using accelerometer data in different solutions based on assistive technologies is considered as a future research direction. the detection of the agitation behavior of the people with dementia using wearable devices is also approached in [ ]. the combination of data from multiple sensors leads to better results than in the case when data from a single sensor is used. the applied classifiers are rf and svm and the results show that the multi-model sensors are feasible for detecting agitation in the case of the people with dementia. medication adherence behavior of the older adults to specific medication plans is critical, especially when the older adults have special conditions such as dementia. the application of pervasive technologies [ ] for the monitoring of the daily medication behavior may predict when the medication prompting is effective. the approach presented in [ ] considers clustering challenges related to the medication adherence. since the medication adherence behavior is correlated with other daily living activities such as drinking and eating, that approach also considers other activities. the proposed clustering approach is a k-means that is improved using fuzzy set. the authors of [ ] consider the application of reminder-based interventions for the individuals with dementia as the memory limitations often lead to activities that are incomplete or not initiated. the article considers the application of the sensor technologies in combination with machine learning technologies in order to address those challenges. the classifiers considered in that approach are various such as decision trees (dt), k-nn, naïve bayes (nb), svm and logistic regression (lr). the approach presented in [ ] assesses the medication adherence of older adults with a mean age of approximately years. the two measures of adherence proposed in that article are the percent of the days when the medications were missed and the spread in time when the medications were taken. the data were analyzed using three linear regressions and the medication intake habit was monitored continuously using a medtracker -day pillbox. the medication adherence is approached in [ ] in relation with other activities such as walking, drinking water, writing and texting. the applied classification algorithm is rf from apache spark. even though the data were misclassified sometimes using that approach, the application of the near-field communication (nfc) sensors may improve the results. medication intake behavior in relation with the eating and the drinking behavior is researched in [ ]. the experiments were conducted using data collected from gyroscope and accelerometer sensors and the performance of various classifiers such as k-nn, nb, dt, multilayer perceptron (mpc), rf and hmm was evaluated. moreover, two out of the five analyzed different users were seniors. the results presented in that article are very promising, and the system should provide an adequate basis for smart reminder triggering in the case of the autonomously living seniors. however, that approach was tested only on five seniors the method does not consider special characteristics of the older adults that may have dementia such as memory related problems or unpredictable behavior. the medication intake activities were considered in [ ] using a solution based on data collected from a smartwatch in relation with other activities such as texting, writing, walking and bottled water intake. in terms of f score, the gradient boosted trees (gbt)-based approach returned better results than the approaches based on lr, svm and rf. one advantage compared to other approaches from literature that consider the medication intake activity is the fact that it considers at least two types of medication intake. in [ ] the medication adherence is considered using a ml approach that is based on body worn sensors. the medication intake activity is analyzed considering correlated activities such as drinking, taking chocolate and eating and the applied machine learning classifier is the dt classifier. . . social robots driven intervention social robots are nowadays seen as key technology for supporting older adults care at home or in care institutions. even from the breakthrough of the assistive robot’s technology two main int. j. environ. res. public health , , of advantages were identified: the functional capabilities and the affective aspects [ ]. they can offer different care functions (physical activity, affective therapy, cognitive training, physiological therapy, etc.) while they can help to increase the quality of life of older adults through companionship and social interaction. there are basically two classes of social robots: physically assistive robots that are focused to perform physical tasks and socially assistive robots that can be used for the social and psychological needs of older adults [ ]. few literature studies offer a clear view over the current status and trends for social robots being focused most on old robot models and their potential application in the older adult care domain [ – ]. these studies highlight paro as one of the first social robots with immediate applicability for older adult care. paro is an interactive robot developed by japanese aist research institute that uses animal therapy as a care method. it has reached its th generation with a price around of € and is successfully used in hospitals and care homes across the world, but it can be easily used in the older adult’s home. paro uses tactile, light, audition, temperature and posture sensors to learn the surrounding and interact with older adults and can dynamically adapt to the user’s actions and preferences. as benefits, paro can reduce patient stress and indirectly of their caregivers, stimulate patients and contribute to the socialization part of their life. a recent study has shown that paro can be very useful for improving quality of life of older adults with dementia and alzheimer, affection and social interaction, reducing depression and anxiety—even for reducing pain medication usage [ ]. another comprehensive evaluation study highlights the potential usage of paro as a pet therapy for older people with dementia while identifying barriers for its wide usage such as the fact that users’ needs and experiences are not properly taken into consideration and that it fails to meet the actual clinical needs [ ]. besides these, compared with nowadays social robots, paro has no functionalities for requirements such as stimulating older adults’ memory or cognitive functions, increasing physical activities or aiding the caregiver with care information. the pepper robot developed by softbank is a humanoid robot featuring multi-modal communication able to recognize faces and basic human emotions, is capable of human interaction directly through conversation [ ]. it can also exhibit body language, perceiving and moving around and is currently used in schools for child education or different businesses mainly as information point for users. pepper is priced around € , (acquisition price and subscription fee for three years) and has spawned multiple projects for developing new instances of its basic features such as asimo, coman or enon and eu research projects such as caresses, crowd-bot or animatas. as for its underlying technology, pepper uses a six-axis inertial measurement unit (imu) sensor, microphones, cameras and -d sensor, laser sensing modules, loudspeakers, sonar sensors, infrared sensors, tactile sensors, bumper sensors and features an attached tablet for direct interaction and configuration. for the specific use–case of older adult care, pepper was successfully used in healthcare and older adult-care facilities mainly as narrative-memory-based human–robot companionship [ ] and medicine taking reminding, encouraging older adults to keep active and helping them keep in touch with family and friends [ ]. recent research approaches have used pepper as older adults’ companion for suggesting personalized physical activities in the context of active aging [ ]. the proposed solution uses deep learning methods on pepper recorded information to classify the exercises and to schedule personalized physical activities. the robot is integrated in the context of a robot system named pharos which in addition to the robot component it contains a component for human exercises recognition which applies deep learning models on the data recorded by pepper and a component which recommends physical exercises periodically considering the data from the agenda of the users. in [ ] pepper robot is used in the context of a system called crowd of oz (coz), an open-source system that allows conversational tasks. the objectives of coz are to enhance both the contextual and the social awareness of the workers, to manage the asynchronous nature of the workers during the conversational task and to support the task performance of the workers. the pepper robot has also been used for the case of people that have special conditions such as schizophrenia or dementia during recreational or rehabilitation sessions [ ]. even though the humanoid robot can elicit simple instructions for simple activities such as physical exercises, numerous improvements are required in order to deploy the humanoid robots in int. j. environ. res. public health , , of the long-term care. moreover, other aspects should be considered such as the motivation of the older adults or a sense of calmness from the clients’ side. some benefits of the application of pepper in hospitals [ ] are the lowering of the stress levels and the contacting of the family members when the older adults are unable to contact anyone especially in critical situations when something happens to them. however, there are still further research directions that should be considered such as the recognition of a wider range of emotions. the nao robot is reported in several approaches as useful coaching assistant [ – ]. in [ ] a particular use case for nao is presented as an illustrative scenario for social robot driven intervention, an autonomous exercise tutor. the robot is capable to learn from a human, to generate feedback situations such as speed and amplitude adjustment, mirroring detection and no motion. however, the older adult participants did not prefer the intervention of the robots due to the poor social skills and because they perceived the sessions with the robots as one-to-one instead as a social event. in [ ] a nao socially-assistive humanoid robot is tested in the context of a smart home environment. even though the results presented there suggest that the interaction between the robot and the older adults is not characterized by anxiety, the maintenance of high levels of enjoyment for the older adults for prolonged time periods is still a challenge. nao was also used to detect the behavioral disturbances of the people with dementia [ ]. the authors aimed to evolve the role of the humanoid social robot to a technological support tool that functions autonomously, to drive to the resident and alert the staff or distract the resident temporarily when a behavioral disturbance is detected. there are several other social robots that are reported in the literature as potential solution for older adult care intervention. zora is one of these and can be used in interventions for the care personnel and for the older adult-care institutions [ ]. the results show various types of impacts, ranging from negative to positive. a part of the participants suffered from memory disorders and others required round-the-clock care. the impact on the care personnel differs very much from the impact on the older adults. in the case of the care personnel the impact was on dimensions such as the working atmosphere, the professional development and the competences, while in the case of the older adults the impact was on the physical activities, the older adults’ interaction and the sensory experiences. authors of [ ] consider a mini robot as support for a motivational decision-making system (dms). the stimulating and the improvement of the interaction of the robot with the users is considered from various perspectives such as the performance of cognitive exercises and the performance of educational games. in the scenario described in that article the mini robot has two motivations, namely a social motivation and a relaxing motivation, and those two motivations must be in equilibrium while the robot interacts with a user. however, one drawback of that approach is that the robot is modeled using only two motivations and many other complex aspects should be considered when the users have specific health conditions. another approach [ ] proposes the learning of the social gestures through imitation through a humanoid robot called tangy that is programmed to avoid the self-collisions and to generate arm trajectories that are collision-free. even though the human demonstrators considered in that article do not have health conditions, the research considered in that article can be further adapted to stimulate the interactions of the older adults with the social robots. another study that considers the application of social robots for older adults’ intervention is presented in [ ] where the authors propose stevie robot that is tested and validated on different categories of users such as the residents of a retirement community and the healthcare personal of that community. however, the capabilities of the robot should be extended in order to apply that robot in the case of the people with dementia or with different types of physical disabilities. a combination of more than one robot for developing behavioral intervention systems but focused on the children with autism spectrum disorders is proposed in [ ]. the approach uses irobiq and caro robots for providing training and support. table summarizes the main approaches analyzed in the context of older adults’ robot driven coaching and intervention organized by the type of social robot intervention used. int. j. environ. res. public health , , of table . social robots’ intervention approaches in research literature. social robot approach conditions older adult interventions nao [ – ] cognitively healthy older adults; persons with dementia/alzheimer’s detection of behavioral disturbances; physical exercises tutoring, recreational activities; physical training pepper [ – ] cognitively healthy older adults; crowd workers; people with schizophrenia or dementia detection and classification of physical exercises; stress management, companion for older adults; rehabilitation recreational activities; sentiment analysis; narrative- memory-based human–robot companion; medicine taking reminding, encouraging older adults to keep active and social stimulation paro [ – ] older adults with dementia pet therapy; reduce patient stress; social interaction, reducing depression and anxiety stevie [ ] care house residents and caregivers care support, entertainment, cognitive engagement, social connectivity irobiq & caro [ ] children that have autism disorders social training, emotions analysis zora [ ] older adults with memory disorders stimulating older adults through exercises and interaction mini & tangy [ , ] cognitively healthy older adults educational games; imitation learning . . technology limitation and user acceptance older adults are keen to continue living in their own homes rather than move into residential institutions and the assistive technologies reviewed in the above sections have the potential of providing the need support in managing various problems of their daily life. however, there are specific challenges that need to be addressed for both technological development perspective and integration with the care models as well as regarding its acceptance by the older adults. from the technological perspective, the nowadays older adults assistive services are shifting towards the use of objective monitoring using iot sensors and sensors networks, but in general, they lack in personalization when it comes to addressing the older adults wishes and needs and are relying on dedicated healthcare resources for assuring the intervention and continuity of care. the assistive service models in the area of managing and carrying of older adults are focused on providing general information and awareness of the specific disease. being overwhelmed due to daily life activities and carrying duties the end-users are no longer interested in general-purpose information, but they want personalized target support. in addition, most of today’s care process assessment is still relying on self-reporting of “perceived behaviors”, but this kind of models are proven not to be viable in the case of elders who mostly deals with problems such as forgetfulness and confusion and chaining mood and behavior. recent iot advancements and the development of miniaturized sensors have the potential of changing this situation, by enabling the remote and daily monitoring of important care aspects such as adherence to recommended therapy and lifestyle changes delivering more coordinated innervation through the means of social robots. in addition, this has the potential of improving the older adults’ engagement and adherence and timely communication among all parties involved in the care process. moreover, there is a need of integrating within the nowadays care models novel technology solutions supporting the non-face-to-face interaction and follow-up of older adults, such as advanced robot-supported verbal communication tools with caregivers and patient and/or family/caretaker support for self-management, independent living and activities of daily int. j. environ. res. public health , , of living. all these limitations need to be systematically addressed to support the perspective shift for next-generation of coordinated care service models for older adults which are relying on ict-based pervasive and objective monitoring of daily live functioning using advanced iot sensors, quantifiable metrics of assessing the elders’ deviations signaling conditions decline and timely interventions supported by robots/tablets/avatars. acceptance of these novel technologies well as their daily usage may be challenging for older adults. as shown in the literature, several technology acceptances factors can be correlated with aging ranging from technology costs, privacy implications and usability up to social aspects such as the implications for family or friends [ ]. several acceptance models can be used to support the process as technology acceptance model (tam), unified theory of acceptance and use of technology (utaut) or senior technology acceptance model (stam) [ ] by assessing indicators such as technology perceived usefulness, ease of use, experience or social implications. however, even these models cannot capture aspects such as user acceptance in time and miss key aspects in the older adult life such as cognitive decline and social isolation [ , ]. monitoring older adults’ activities is the most common identified barrier for older adults’ acceptance since it involves breaking their privacy by installing smart devices such as wearables or sensor networks in their homes and collecting sensitive data [ ]. even that at beginning the older adults may not trust in these technologies, after using them they start to perceive them as important. a key role for accepting in home remote monitoring is attributed to family, friend and caregivers that can assist, train and support the older adult in embracing the change. passive monitoring-based on iot devices is the most suitable approach for smart home data collection while wearables technology seems to have a good acceptance ratio especially to well-educated older adults that appreciate the possibility of self-monitoring their health status [ ]. in contrast, active monitoring such as monitoring older adults with cameras in their environment is raising major privacy and ethical concerns and consequently it encounters their reluctance of using such systems even though they are useful for users that have health problems such as dementia [ , ]. in domestic environments, sensor-based monitoring infrastructures usually require combining heterogenous sensors and devices for capturing information regarding the older adult behavior leading to another major issue for developing smart aal systems, namely data heterogeneity. however, this issue was thoroughly researched leading to different solutions ranging from involving web semantics and sharing a common context model for building smart objects in heterogenous iot networks [ , ] to defining and using ml and big data technologies to process time-series-based heterogeneous and distributed streams of data in a unitary approach [ , ]. the benefits of assistive technologies come from their core artificial intelligence (ai) components that use advanced ml techniques for taking decisions, alerting or providing support for doctors and caregivers. the user acceptance for these technologies relates to their understanding of the brought benefits and potential improvement for their quality of life. in general, older adults, doctors and caregivers agree and seem to be comfortable to us ai/ml technologies for assisting and improving the care process [ , ]. they are usually adapted to particularities of older adult’s health status such as mild dementia [ ], medication and polypharmacy [ ], cardiovascular problems [ ] or physical activity [ ]. however, the acceptance of such technology is usually influenced by factors such as age and education [ ], while the adoption of intelligent technologies is corelated with the older adult loneliness and with the support provided by caregivers [ ]. the use of social robots for older people care at home or in initialized care is a new technological trend for supporting the intervention in assistive care models. existing studies for the social robots’ acceptance are relatively new and conclude that further research is required for assessing acceptance rate, but in the same time clearly identify the care areas where the robots can be successfully used as physical assistance, safety/monitoring and social companionship for an older adult [ , ]. other surveys show that older adults have positive thoughts regarding the usefulness, utility, safety and trust of a social robot, while doctors and caregivers consider that the robot is a useful tool for rehabilitation [ ]. in general, more positive acceptance is found after the users interact with the robot after a period, while the acceptance level is directly influenced by the robot’s social capabilities int. j. environ. res. public health , , of [ ]. other authors pinpoint that usefulness, adaptability, enjoyment, sociability, companionship and perceived behavioral control are important for the high acceptance rate of social robots [ ]. one specific factor for accepting the social robot as a care companion is loneliness, the social robots may offer support and companionship especially at home [ ]. . novel integrated robot-based care services in this section we discuss on the potential usage of the reviewed technologies for the development of advanced assistive and care services focusing on their features implemented and architectures. . . polypharmacy management most older adults with comorbidities are taking several drugs per day being exposed to the negative effects of polypharmacy. ensuring appropriate medication usage in this population is clinically important because of the significant risks for institutionalization and negative impact of drugs related problems on older adults’ wellbeing. polypharmacy management includes the review of medication intake, identification of medication side effects and lack of adherence of patents thus it tends to be challenging in case older adults. for medical professionals it is difficult to properly assess the behavioral and psychological symptoms of the older adult patient and distinguish them from medication side effects, since changing is gradually and is likely to be multifactorial (also because the patients have difficulty describing the changing situation) while for the patient it is difficult to take the appropriate medication at the right time. a medication review is utmost important because unfortunately, due to age-related drug metabolism and other problems related to frailty (low vision and reduced psychomotor functioning among others) or due to transitions towards home healthcare, the older adult is at risk of experiencing drug-related problems. these problems are usually caused by drug use, drug choice and adverse reactions, interactions or contraindications. drug related problems may occur in various steps of the medication process (from prescription till evaluation) and they are dependent on various actors in the chain of pharmaceutical care such as the physician, nurse, pharmacists or their accountable assistants and off course the patient himself. the polypharmacy management service (see figure ) aims improve the medication process for older adults by combining the objective monitoring by means of sensors with machine learning techniques to properly assess the medication use and potential side effects experienced and by leveraging on social robot/tablet to provide timely personalized support to older adult patients (i.e., medication reminders, direct link to caregivers or medical professionals, etc.). this service is related to the eu aal medguide project [ ], in which the authors are responsible to its technical implementation. int. j. environ. res. public health , , of figure . assistive technologies use to implement the polypharmacy management service. the polypharmacy monitoring deals with the acquisition of data from sensors that are deployed inside the older adult home targeting the monitoring of activity of daily life with a view of assessing the daily routine baseline and deviations and medication intake to asses adherence to the prescribed medication plan. the following types of activities of daily living were identified as relevant and on- the-shelf commercial sensors, including devices associated with the environment in which the older adult patient lives were used for their monitoring:  community mobility—refers to outdoor activities;  feeding—refers to the activities of preparing and eating food;  functional mobility—refers to indoor activities;  total hygiene—refers to the toilet visits and showering activities;  sleeping—refers to overnight sleeping and afternoon naps motion sensors and ibeacon tags are placed around the home such as on the refrigerator door or on the bed, to monitor and deduce older adults’ activities (see table ). table . types of sensors installed in the home and the monitored daily life activity. sensor names installation place monitoring of daily life activity bed sensor bedroom sleeping pattern of an older adult in terms of period and continuity sleeping fridge sensor kitchen the number of times the fridge has been opened by the older adult feeding motion sensor kitchen the older adult’s activity in the kitchen feeding entrance sensor entrance the number of times the entrance door has been opened or closed community mobility motion sensor entrance whether the older adult has left or entered the home community mobility motion sensor living room how much physical activity is performed in the house functional mobility motion sensor bathroom the number of times the older adult has been to the toilet hygiene int. j. environ. res. public health , , of for medication intake monitoring on-the-shelf pillboxes is used. in this case, the pillbox will not be used as a simpler organizer or a locked box with a daily alarm but will enable the assessment of adherence level to the medication plan and the report that information back to a doctor, pharmacist or caregiver. machine learning-based analytics leverages on big data techniques to process the heterogeneous and distributed streams of monitored data to establish the baseline daily life activities of older adult and to detect in real time events that represent changes, either sudden or gradual, in patients’ activity routines which may signal progression of his symptoms, wellbeing decline or side effects of medication [ ]. the recent advancements in sensing technologies, iot and the prevalence of miniaturized, affordable sensors and smart objects, will led to an “explosion” in contextual big data that may be used for improving the older adults with dementia care and treatment. to efficiently exploit the large amount of historical monitored data machine learning algorithms may be used to extract new knowledge and correlation between unrelated daily life activities events which may represent deviations from original older adult patient baseline. the data sensor records collected throughout a day are further aggregated and the relevant features are extracted to identify the daily sequence of activities for each older adult (see figure ). (a) (b) figure . (a) example of monitored older adult activities in a day; (b) features extracted and used in machine learning. the sensors data flow management is achieved using the following technologies (see figure ): (i) zookeeper [ ] as centralized service used for maintaining configuration information, distributed consistent states and synchronization, (ii) kafka [ ] for building real-time data streaming pipelines to be integrated in the master data set and (iii) cassandra [ ] database for storing time series data from sensors. int. j. environ. res. public health , , of figure . sensor data management and machine learning (ml)-based analytics. baseline assessment techniques aim to identify the routine of an older adult for the entire day, i.e., the daily activities that s/he will normally carry out. features are extracted from the daily monitored data, and for each type of activity considered, an input for the random forest classifier is provided, which works by building a set of decision trees. each decision tree is trained on a subset of the training data set. during the testing phase, each decision tree part of the random forest votes for the class to which a test instance belongs (i.e., baseline or not); the class with the most votes is assigned to the associated test instance [ ]. deviation detection techniques seek to detect changes in older adult daily routines that may represent potential side effects of medications s/he had taken, as corelated with the information acquired using the table sensors infrastructure and pillbox monitoring. a significant deviation from the baseline may be classified, for example, if the total time and frequency corresponding to at least one activity type performed by the older adult on a specific day is higher or lower than a pre- defined threshold as compared to the same activity type registered in the baseline. for this technique, naïve bayes classifiers can be applied to compute the probability of performing a specific type of activity at a given moment, considering the baseline behavior as a set of conditional probability models. to correlate detected deviations from potential side-effects of drug–drug interactions, a drug– drug interactions domain ontology is used [ ]. this ontology models the pharmacological effects of drugs; the pharmacodynamics actions of drugs; the mechanisms by which these actions are performed; the processes of absorption; transportation, distribution, metabolism and elimination of drugs; the recommended dose and the interactions between drugs. concepts of the ontology are used to label and annotate the significant deviations detected with potential side effects of drug to drug interaction taken form ontology. then, a clustering algorithm such k-means is trained and then used to cluster similar days containing significant deviations from the baseline and the results of the clustering algorithm are used to correlate future monitored days with potential drug–drug interactions. each cluster will contain similar annotated days and the label of the cluster is given by the annotation (i.e., drug–drug interaction and its adverse effects) of the cluster’s centroid. robot-based coaching and intervention provides personalized care and coordinated guidance, motivation and support for the older adult patient and associated informal caregivers aiming to increase their adherence to the medication plan. an interactive social robot may be used that can speak, respond and receive and send messages to any kind of electronic device (candidate robots: james robot [ ], komp/av robots [ ], etc.). the output of the machine learning analytics will be used for personalizing the robot-based interventions. to achieve this, we pre-define and use robot activities configuration templates and scripts that are associated with each type of identified definition. they will be defined using drag and drop symbol-based programming language and will be integrated with the robot to automatically boot strap and setup the coaching processes fitting older int. j. environ. res. public health , , of adults’ needs, wishes and post discharge recommendations. this will positively impact their adherence to medication plan and will overcome problems which may lead to re-hospitalization. at the same time, the robot can be used to deliver roadmaps and list of actions for better polypharmacy management by implementing the doctors and pharmacist recommendations. predefined step-by- step video or audio instructions in conducting various lifestyle changes activities or reminders for taking medications delivered using the robot. this may include care feedback and anticipatory guidance for transitional care allowing the patient or the caregivers to repeat information back to confirm understanding (“teach-back”). in addition, personalized motivation slogans and sayings will be pre-registered and used to achieve a high degree of personalization of the care of older adults as the symptoms progress helping them to follow the doctors’ recommendations. social robot usage will increase the independence of the older adults allowing them to connect on-demand with the doctor or informal caregiver via scheduled virtual video meetings. figure shows the main data flow among components as well as the interaction of end-users with the polypharmacy management service as well as the interactions between the service modules. the doctor/pharmacist may register the older adult with the service and introduce relevant information known routines, active drug prescriptions—including the drugs that the older adult takes, the dosage, the intake moments and the duration of the treatment. they may check the older adult’s medication adherence for a selected date, the daily baseline and potential deviations as well as the machine learning-based suggestions for potential deviations. in addition, they play an important role in robot-based intervention configuration by annotating the deviations with potential side effects of the drug–drug interactions and providing personalized recommendations and content to be played by the robot. the older adult activities of the daily living are continuously monitored, may provide his/her wishes and needs concerning the service and receive the recommendations, instructions to follow via engaging with the social robot companion. the caregiver may supervise the interaction of an older adult with the robot and at the same time may view the recommendations to be implemented. figure . end-user interactions and data flows among modules of the polypharmacy management service. int. j. environ. res. public health , , of . . social and cognitive activity engagement social assistive robot-based systems featuring sensor-based monitoring, activity and cognitive games and social networking capabilities can be used to stimulate the physical, cognitive and social conditions of people by consolidating their current condition and/or restraining deterioration of their cognitive state [ ]. to improve their quality of life while independent living at home, a social robot can provoke the older adult in playing games and perform social activities considering their current state, wishes, needs and preferences. the older adults’ monitoring is based on a combination of seniors and virtual sensing devices (self-reporting condition or memories) used to determine the older adults’ activity levels, sleeping patterns/quality and mood as well as their metal condition and relevant information to achieve a more personalized interaction with the robot. the robot device can be used as an intelligent hub for collecting and pushing data into the cloud for further analysis and assessment. the monitored data will be stored in a data storage enacting its future processing to allow contextualization of the robot- based activities. the assessment will be centered on detecting older adults either sudden or long-term decline in physical, social or cognitive activities. machine leaning techniques can be employed to mine the monitored data, for translate the older adult’s past and present state into estimates of the future thus, obtaining a reference to the potential decline well-being (i.e., long-time trends, seasonal and irregular components, etc.). motivation to conduct specific activity is challenging and will be implemented using gamification, providing goal and reward scores and social networking applications. physical and mental stimulation and prevention of cognitive decline will be provided through interactive gamification. a certain degree of personalization can make cognitive and physical activities more social and enjoyable for the older people by an innovative combination of visual games and applications and a robot companion. the robot modules will not be merely standalone applications, but will be contextualized, filtered and integrated to give personalized experience of a smart and seamless environment. the personalized filtering will facilitate social participation of the older person, reminding scheduled upcoming activities and visits, either through direct communication or through displaying them on tablet and/or flat screen tv. the robot will encourage them and follow-up on a wide range of activities, which can be performed individually or in groups and both indoors and outdoors. publicly available exercise games and content will be used/adapted to interface with the robot and will not require log in from older adults being offered in a full-kiosk mode to avoid accidentally closing or exiting the application and improving the app has visible and clear appearance. the conceptual architecture of this system, to be developed in the context of eu aal remind project [ ], is presented in figure and defines the two type of interaction paths between the older adult and the robot (zora james robot): (i) individual personalized interaction—one-on-one interaction of an older adult with the robot and (ii) non-personalized interaction—more related to the group of older adults interaction with the robot (i.e., fitting the care facility scenarios). the personalized interaction path is supported through the bibliography module, which is responsible to acquire and store various biography information (i.e., memories) to be used then for defining the older adult customized interaction. the biography data are stored in a personalization database, on top of which the user-engagement and support module will run analytics to detect the right social triggers for personalizing the older adult—robot interaction. the personalization will be carried out both with regards to the type of robot-based applications to be triggered at a specific moment of time and with the content the applications will leverage. as result personalized kiosk of robot-based applications will be created customized to the biography information of the older adult. the caregiver (cg) will be able to filter the inferred social triggers and using the caregiver application will set up appointments for robot driven activities using a calendar-based application. at the same time, it will be able to put in contact or connect the older adult with its social network (i.e., family members, friends, etc.) to carry out different social activities. int. j. environ. res. public health , , of figure . personalization of the robot-based interaction. on the robot various modules are implemented and used in correlation with the activities the older adult may conduct to increase its activities levels and timely address the potential cognitive decline. the exercise–music module will be able to play entertainment content such as music, video or tv or it will provoke the older adult to conduct physical activities such as follow the robot. in addition, it will be able to play videos of older adults performing physical activities tailored to the older adult’s physical condition and will engage them in such in physical activities by providing instructions and encouragement. the games module will be featuring games that can be played with the help of the robot. games such as bingo, proverb quiz, packing my suitcase, etc. will be considered with the robot being able to play the role of the game host or caller. the activities reminder module will be able to remind to drink water and take medication as planed and will provide reality orientation activities by providing information on weather, news, upcoming events and daily meals. the video calls module will be able to set up video calls for the older adult with members from its social network based on previously made appointments in calendar. the interaction between the older adult and the robot is facilitated by the robot–device interaction module, featuring vocal commands and tactile-based interaction. the user-engagement and support module implements and runs analytics on top of the data collected by the biography module to understand the social triggers for older adult’s engagement with the robot and to create personalized kiosks according to the older adult profile and biography, to be enforced on the robot. the personalization will be achieved both in regards with the type of robot-based applications to be triggered at a specific moment of time and with the content that the applications will use. figure presents the internal architecture and technologies used for implementing this module. int. j. environ. res. public health , , of figure . user-engagement and support module implementation. the following internal components will be implemented. knowledge base management component is responsible for performing create/read/update/delete (crud) operations on the social triggers’ knowledge base using the model ontologylibrary [ ]. it is also responsible for interacting with the keosity application [ ] through its dedicated representational state transfer (rest) application programming interface (api) to extract the biography of the older adult. the model ontology library it is a library defined by the authors is providing a very light interface for accessing the knowledge in the form of ontology and reduces the code complexity. it offers one-line methods for performing basic operations (create, update, delete, find). it uses reflection to parse the java entities, hiding in this way the code complexity needed by apis like jena [ ] and ontology web language (owl) api [ ] to perform operations on ontologies, at the same time, benefitting from the performance and scalability properties offered by these. furthermore, it is the first library that offers the functionality of generating semantic ontological model from an object-oriented model. the social triggers knowledge base is the data model of this module being implemented as an owl ontology which contains the concepts and rules-based on which the older adult specific data are analyzed. the social triggers knowledge base will model four main facets of the older adults as core sub-ontologies (see figure for the ontology design model):  bibliography aspects—which may be familiar or unfamiliar and it is collected using the bibliography module;  personal profile aspects—which concern his/her preferences wishes and needs being also provided by the bibliography module;  robot-based actions—potential actions in which the older adult may be engaged with the robot;  consequences—the actual and desired result of conducting a specific activity with the robot; int. j. environ. res. public health , , of figure . proposed older adult–robot engagement and motivation ontology. the reasoning engine is based on an inference engine allowing to run reasoning rules on the ontology considering the older adult specific data to infer personalized triggers that will be further enforced on the robot. it is based on tools like pellet [ ], jena and d rq [ ] and will run and evaluate the defined rules for assessing older adult specific triggers by using the data feed by the bibliography module. two types of rules could be defined and used on the user-engagement and support ontology classes and associated individuals: reasoning rules and query rules. the reasoning rules are written in the semantic web rule language (swrl) [ ] language and used to infer new social triggers information or knowledge out of the ontology. the swrl rules are injected into the ontology and used to reason about ontology individuals in terms of specific concepts, object and datatype properties. rules are written in the form of an implication between an antecedent (body) and consequent (head). both the antecedent and consequent consist of multiple atoms conjunctions. the swrl rules are evaluated by a reasoning engine in our case the pellet reasoner. the query rules are written in semantic query-enhanced web rule language (sqwrl) [ ]. they are language is data-oriented in the sense that it only queries the individuals held in the ontological models and makes no inferences. in the case the reasoner is started, the queries can return not only data that exists physically in the ontology, but also data that is inferred. for example, the sqwrl query from table selects the music content available on the robot to which the older adult is familiar with; in this case, a music file being loaded on the robot if the name of the singer associated to the music file is retrieved in the memories provided by the older adult using the biography module. table . example of social triggers assessment rules. type social trigger assessment rule swrl rule patient(?p) ^ hasid(?p, ?id) ^ swrlb:matches(?id, ) ^ hasmemory(?p, ?m) ^ hasdescription(?m, ?d) ^ hasrobot(?p, ?robot) ^ hasplaymusicaction(?robot, ?action) ^ hasmusic(?action, ?music) ^ hassinger(?music, ?singer) ^ hasid(?music, ?musicid) ^ swrlb:contains(?d, ?singer) -> sqwrl:select(?musicid) sqwrl query patient(?p) ^ hasid(?p, ?id) ^ swrlb:matches(?id, ) ^ hasmemory(?p, ?m) ^ hasdescription(?m, ?d) ^ swrlb:contains(?d, \”michael jackson\”) ^ hasrobot(?p, ?robot) ^ hasmusic(?robot, ?music) ^ hassinger(?music, ?singer) ^ swrlb:contains(?singer, \”michael jackson\”) -> hasknowledgeofmusic(?p,?music) int. j. environ. res. public health , , of in the same table an example of swrl rule is provided that infers whether an older adult has knowledge (i.e., is familiar) with some music content available on the robot by determining if the name of the singer associated to the music file is retrieved in the stored memories. by executing the rule, a correlation between the older adult and the specific singer is established using the has knowledge of music object property. the robot actions enforcement component converts the older adult personalized triggers into specific robot actions and personalized kiosks that are further run on the robot. the communication with the robot is performed through a message queuing telemetry transport (mqtt) api [ ]. to create a new kiosk, the inferred information about the personalized social triggers is used as a filter to search for specific content in the robot’s files system by means of an executioner filter. the filtering result is sent to a kiosk builder that creates a new kiosk object which is sent using mqtt connection and uploaded to the robot. . conclusions this study provides a comprehensive survey of smart environments and robot assistive technologies by identifying the main research problems and technologies limitation and highlighting the current status of their development. the goal was to analyze the foundation for implementing age-friendly care services and for supporting the independent living of older adults at home. the study is organized in three directions: monitoring daily activities, machine learning for behavior assessment and social robots-based intervention. the survey shows that even though various technologies and techniques do exist in the aal domain, future research is required for matching these onto the specific needs of older adults and their living context and increase their level of adoption. finally, we discuss on potential usage of these technologies, in the context of two innovative care services, namely polypharmacy management and social and cognitive activity engagement. these care services are based on the findings and developments made in ongoing h ambient assistive living projects and showcase the potential of smart spaces, machine learning and social robot-based systems for improving the quality of life and care processes of older adults. as future steps, we plan to integrate the proposed big data polypharmacy management infrastructure into the h hcare aal project platform for developing an older adult post-discharge monitoring and follow-up service that will assess the adherence to the prescribed post discharge lifestyle changes recommendations and medication plan of an older adult and will offer support to him/her through the komp/av social robots. in the same fashion, we plan to further develop and integrate the social and cognitive activity engagement service as part of the remember-me and remind aal projects for developing solutions for stimulating the physical, cognitive and social conditions of older adults through the james robot. author contributions: conceptualization, i.a. and t.c.; methodology, i.s. and t.c.; investigation, d.m., c.d.p. and m.a.; writing—original draft preparation, i.a., t.c., v.r.c. and d.m.; writing—review and editing, c.b.p. and t.c.; visualization, i.a. and d.m.; supervision, i.s.; funding acquisition, i.a. and t.c. all authors have read and agreed to the published version of the manuscript. funding: this research was funded by the romanian national authority for scientific research and innovation, cccdi–uefiscdi and of the aal program with co-funding from the european union’s horizon research and innovation program grant number aal / remind, aal / h hcare and aal / remember-me within pncdi iii. conflicts of interest: the authors declare no conflict of interest. references . 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online: https://github.com/protegeproject/swrlapi/wiki/sqwrl (accessed on april ). . zora robot interaction api. available online: https://docs.zoracloud.com/mqtt-api/ (accessed on april ). © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). sustainability article the role of social farming in the socio-economic development of highly marginal regions: an investigation in calabria dario musolino , ,*, alba distaso and claudio marcianò centre for research on geography, resources, environment, energy and networks (green), bocconi university, via roentgen , milan, italy department of economics and political science, university of aosta valley, street cappuccini , aosta, italy department of agricultural sciences, mediterranea university of reggio calabria, località feo di vito, reggio calabria, italy; albadistaso@gmail.com (a.d.); claudio.marciano@unirc.it (c.m.) * correspondence: dario.musolino@unibocconi.it received: april ; accepted: june ; published: june ���������� ������� abstract: this paper focuses on social farming, a new “branch” which includes activities that make use of agricultural, rural and natural resources in order to produce food and social services. it investigates the case of calabria, one of the least developed regions in italy and in europe, which suffers from several serious problems; for example, the low level of accessibility, and the presence of the mafia organisations. we wondered whether in such a region social farming can make a significant contribution to its social and economic development. using the data collected by means of a qualitative investigation of some of the most important calabrian social farms, we studied their characteristics, their strategies, their social mission, and their role in the local socio-economic context. we found that most of them are successful, in both economic and social terms, and their role in the local community is positive. moreover, they are making a valuable contribution to the cultural change required to overcome the predominance of the mafia. keywords: agriculture; lagging region; isolation; calabria; mafia organisations; direct interview; thematic analysis . introduction social farming is a recent and rapidly evolving phenomenon that has spread considerably in the most developed areas of the european continent. consider, for example, that, in countries such as holland, france, belgium, germany, as well as in italy itself, the first surveys carried out in the last decade already revealed a significant presence of this phenomenon [ ]. to date, in italy, according to giarè et al. [ ], about occurrences of social agriculture have been registered. it is a new and atypical “branch” to be placed in the context of the growing diversification and multifunctionalisation of the agri-food sector, a structural process that is responding to the ever wider and more complex needs of society, in terms of production, welfare, social and territorial cohesion [ – ]. social farming can be defined as ‘an umbrella term for all those activities that make use of agricultural, rural and natural resources (plants, animals, the space and time of nature) in order to produce food and social services in both rural and peri-urban areas’ [ ]. to use another definition, provided by the european economic and social committee [ ], social farming can be defined as ‘a cluster of activities that use agricultural resources—both animal and plant—to generate in rural or semi-rural areas, social services such as rehabilitation, therapy, sheltered jobs, lifelong learning and other activities contributing to social integration. in this sense, it is about—among other things—making farms places sustainability , , ; doi: . /su www.mdpi.com/journal/sustainability http://www.mdpi.com/journal/sustainability http://www.mdpi.com http://dx.doi.org/ . /su http://www.mdpi.com/journal/sustainability https://www.mdpi.com/ - / / / ?type=check_update&version= sustainability , , of where people with particular needs can take part in daily farming routines as a way of furthering their development, making progress and improving their well-being”. italian legislation, in particular law / , states that agricultural entrepreneurs, in single or associated form, and social cooperatives with turnover deriving from agriculture that is their main activity, are defined as social farmers. moreover, social cooperatives with agricultural turnover not dominant, but higher than % of the total, are also considered to be social farmers, in an amount corresponding to that share of their turnover [ ]. social farming in italy is therefore defined by activities aimed at carrying out (art. , co. ): • socio-employment integration of disadvantaged workers and people • social services and activities for local communities • services in support of medical, psychological, and rehabilitation therapies, including using farm animals and growing plants • projects aimed at: safeguarding biodiversity, fostering environmental and food education and making the area known by organising social and educational farms we would say that this is not merely a new form of multifunctionality of agriculture, aimed at linking the production of agricultural goods to the provision of services to people in rural areas. it is also, on the basis of the principles of the civil economy it incorporates [ ], a form of agriculture strictly connected with a system of values focused on the production of common goods, on respect and on the enhancement of diversity, relational goods, food and ecological citizenship. it produces positive social and territorial externalities, thereby re-establishing the link between food and community, strengthening the social networks around food production, and generating environmental, economic, and social self-sustainability [ ]. its innovativeness also lies in the aims of the companies that operate there, including those of a social nature (e.g., the re-insertion of disadvantaged segments into employment), which join, and are combined with, the typical aims (profit) linked to the production activities carried out for the market [ ]. as di iacovo et al. [ ] argue, social farming covers a plurality of organisational and activity models, which involve not only agricultural enterprises and social cooperatives, but often also wider networks, with associations, public services, and the local community. such a new logic, such a new approach to agriculture, can definitely serve as a basis for an alternative model of economic development and society, in particular for the most disadvantaged areas, which are still struggling to define and find their own path and their own identity [ , ]. in these areas, the agri-food chain often represents one of the best “cards” in which to invest in order to be more competitive and grow [ ]. the areas of southern italy, historically plagued by structural problems, some typical of marginal areas (periphery and isolation), others specific (the presence of organised crime), constitute in this sense an apparently fertile ground for experimenting with, and observing, new models of development. the present work focuses on the investigation of a set of experiences of social farming in calabria, one of the least developed and most depressed regions in the country [ ], in order to explore whether this “branch” can develop in such a region, and can contribute to its future socio-economic development. the strictly economic dimension is analysed together with the social mission of these realities, with the ultimate objective of verifying whether in such a marginal region this new agricultural practice can actually contribute, even in embryo, to a new path of development capable of releasing many positive effects in the territory, economically, socially, and culturally. the paper therefore aims to fill the research gap existing with concern to the in-depth knowledge of this “branch” of agriculture in disadvantaged areas. clearly, we assume that social farming, even when highly developed, can hardly acquire an important weight in economic terms (even agriculture itself, in spite of its recent positive changes and trends in economic terms, still remains rather negligible at the macro-level compared with other sectors, like manufacturing and services). however, it is necessary to emphasise again that social sustainability , , of farming, being an activity with a wider meaning and value, and with diverse multiple implications (not only those linked to the production activities carried out for the market), can have important effects in places like calabria that suffer from both low economic development and serious social and institutional issues, as we will see in section . in this sense, the focus is also on certain critical issues (for example social farming and organised crime), which are decisive for its affirmation as a key ‘sector ’ to relaunch areas like calabria. the research study follows, broadly speaking, a case study approach. in particular, it tries to develop an exploratory and instrumental type of case study [ , ]. such a study comprises a three-fold methodological approach: an analysis of the existing literature on the subject of study; followed by an analysis of the case study context, which favours descriptive and quantitative elements; and, finally, a presentation and discussion of the most significant occurrences of social agriculture in calabria, using a qualitative approach, in the data collection phase (direct surveys with face-to-face interviews), and data analysis (thematic analysis). the paper is organised as follows. section is dedicated to the literature on social farming, in particular as concerns its development in marginal areas. section presents the case study under investigation, centered on calabria, providing in evidence factors and figures about its serious social and economic situation. section describes how the field investigation was conducted and the methodological approach adopted, and then presents and discusses the results of the investigation, as concerns the economic and social mission of the social farms, and the critical questions that social farming addresses in calabria. finally, we draw some conclusions and the lessons learnt from this case study. . social farming in disadvantaged regions: elements from the literature social farming, as a “branch” obviously located in rural areas, has inherently the potential to have an impact on the society and economy, especially in marginal and disadvantaged areas. however, the literature on social farming, in particular as regards marginal and disadvantaged areas with a low level of socio-economic development, appears to be very limited. based on vigano and musolino [ ], who recently focused their attention on social farming especially in these areas, and di iacovo and o’connor [ ], who edited one of the most important studies on social farming in several northern and southern european countries, we identified five types of possible virtuous effects of social farming on these areas. first, it can limit the territorial dispersion in the provision of services, and the consequent inaccessibility to services, thereby creating proximity for users and responding in an innovative way to their needs, based on multifunctionality. secondly, in these areas it strengthens relationships and networks, either formal or informal, involving users, producers, institutions, associations, local community, and so on [ ]. in this way, it limits the ‘natural’ isolation which entrepreneurs and other actors normally experience in disadvantaged and marginal areas. in this respect, it can strengthen social capital in these areas, as it concerns ‘community-based and community-oriented development approaches’ [ ] (p. ), which emphasizes, and gives value, to concepts like gift and reciprocity. thirdly, it improves the image and raises the reputation of products and services coming from these areas, as social farming creates a distinctive feature in many distribution channels that is appreciated by final consumers who are sensitive to ethical issues and environmental and social sustainability [ ]. it is well known, for example, that social farming re-uses abandoned land, and uses land confiscated from mafia organisations, as we explain later with regard to calabria. fourthly, social farms have positive effects on the landscape and environment (see, for example, the attitude to landscape maintenance of social farmers, and the high share of organic social farms) [ ]. lastly, needless to say, its development creates new job opportunities, not only for disadvantaged people but also for professionals, in areas where obviously the low level of employment is one of the most serious problems (see, for example, the two case studies in southern italy analysed by giarè et al. [ ], concerning the inclusion of migrants in social farms). sustainability , , of the only important and wide survey conducted in italy on social farming [ , ] casts light on some of the basic characteristics of this new “phenomenon” in lagging regions. this survey has many limitations, so it cannot be taken as a systematic and reliable information source for evaluating its quantitative importance, but nevertheless it provides the base to depict a first picture of this phenomenon (obviously based on the southern italian disadvantaged regions). interestingly, in southern italy, social farming is less developed than in central and northern italy, but even so there is a remarkable number of social farms: in total about , but only about in calabria. southern social farms, as is usual for italian social farms which follow what is called in italian an “inclusive model” [ ], have the social and work integration of disadvantaged workers and people as their main mission (about % of the total). incidentally, in this respect, there is a clear difference with northern european countries, where, instead, therapeutic activities (care farming) prevail [ , ]. the social support provided by southern social farms covers several groups of disadvantaged people, but none of them is predominant: % of the assisted people are disabled, about % are drug addicts and children in problem families, detainees, and long-term unemployed people. interestingly, these social farms are also able to establish linkages, connections, networks with local actors, as most of them have working relationships, and cooperate with other associations, farms, schools, social services, etc. as far as production is concerned, the interesting point emerging from this survey is that social farms in southern regions are rather diversified in terms of products and services (agri-tourism, restaurants, didactic farms, etc.). in particular, as concerns agriculture, they have a clear specialisation in organic farming, which is a sector on the increase in the national and international food markets [ ]. however, these farms are often small, usually are not organised and technologically advanced, and nor are they particularly efficient and effective in sales and distribution (for example, they rarely do e-commerce, but are more often engaged in direct selling and farmers’ markets). this is probably why, in one case out of two, they invest in order to improve processes and products in social farming (especially buying equipment and machinery, improving buildings and plants, improving transport accessibility, planted trees and greenhouses), using, in one case out of three, their own funds. the final impression obtained from these data is that, in spite of having some deficiencies, the southern social farms have the ability to serve local communities, by providing a wide range of services and products. . the case study area: calabria, a lagging region in southern italy calabria is an italian region (figure ), inhabited by , , people, and is the th administrative nuts region in italy in terms of population. calabria is located in southern italy (also known as the mezzogiorno), the least developed macro-area in italy, whose low level of development creates what is called the north-south divide, the most persistent and known characteristic of italian socio-economic geography [ – ]. within southern italy, calabria is characterised by the worst socio-economic figures. the gdp per capita in , for example, was about . k euros, about half the average of the central and northern regions: and it has actually declined since [ ]. the employment rate in the same year ( ) was . %, while in italy as a whole at that time it was . %; though this indicator has declined in recent decades ( . % in ) [ ]. sustainability , , of sustainability , , x for peer review of figure . geographical location of the case study area: calabria. source: our own elaboration. as a consequence of the scarce level of economic development and the high level of unemployment, the wealth of the resident population is low, and poverty is a relatively widespread phenomenon [ ]. the relative poverty rate in was about %, while in italy it was % and in southern italy % [ ]. demographic growth is no exception (https://www.tuttitalia.it/calabria/statistiche/popolazione-andamento-demografico/): from to , the annual demographic growth was negative (from − . % to . %). as svimez underlined [ ], calabria is one of the italian regions going through a kind of “human desertification” process. several factors, economic, social, institutional, and cultural, can explain such a low level of development, as is also shown by the wide literature on the development of the lagging southern regions [ , , ]. economic factors include, first, a low level of industrialisation. employees in the manufacturing sector in calabria historically account for an extremely low percentage of the total working population [ ]. the competitiveness of the calabrian productive system is low: local firms are characterised by a low level of internationalisation and innovation, and calabria accounts for an extremely small percentage—about . %—of the total italian exports [ ]. however, its weak industrial development has, conversely, created a remarkable relevance of agriculture even today. calabrian agriculture has shown for some years signs of dynamism in this sector [ ], with a large and robust system of excellence [ ]. this recent growth is based on the specialisation of some typical agricultural products, such as olive oil and citrus fruits (with the only cultivation of bergamot worldwide), and on this region’s prompt response to some emerging market trends such as those of organic, quality products, and nutraceuticals. as far as the contextual factors are concerned, one of the crucial questions relates to transport accessibility. in fact, transport and logistics infrastructure and services are clearly fundamental not only to connect firms to global markets and supply chains, but also for other kinds of relationships (social, institutional, etc.) [ ], and ultimately for regional development [ , ]. in particular, in the case of this peripheral location. eu data [ ] makes evident the low level of transport accessibility in calabria, for all modes (rail, air and road). this lag is also true with respect to information and communication technologies, where there is a ‘digital divide’ between calabria, other southern regions, and the central-northern regions [ ]. figure . geographical location of the case study area: calabria. source: our own elaboration. as a consequence of the scarce level of economic development and the high level of unemployment, the wealth of the resident population is low, and poverty is a relatively widespread phenomenon [ ]. the relative poverty rate in was about %, while in italy it was % and in southern italy % [ ]. demographic growth is no exception (https://www.tuttitalia.it/calabria/statistiche/ popolazione-andamento-demografico/): from to , the annual demographic growth was negative (from − . % to . %). as svimez underlined [ ], calabria is one of the italian regions going through a kind of “human desertification” process. several factors, economic, social, institutional, and cultural, can explain such a low level of development, as is also shown by the wide literature on the development of the lagging southern regions [ , , ]. economic factors include, first, a low level of industrialisation. employees in the manufacturing sector in calabria historically account for an extremely low percentage of the total working population [ ]. the competitiveness of the calabrian productive system is low: local firms are characterised by a low level of internationalisation and innovation, and calabria accounts for an extremely small percentage—about . %—of the total italian exports [ ]. however, its weak industrial development has, conversely, created a remarkable relevance of agriculture even today. calabrian agriculture has shown for some years signs of dynamism in this sector [ ], with a large and robust system of excellence [ ]. this recent growth is based on the specialisation of some typical agricultural products, such as olive oil and citrus fruits (with the only cultivation of bergamot worldwide), and on this region’s prompt response to some emerging market trends such as those of organic, quality products, and nutraceuticals. as far as the contextual factors are concerned, one of the crucial questions relates to transport accessibility. in fact, transport and logistics infrastructure and services are clearly fundamental not only to connect firms to global markets and supply chains, but also for other kinds of relationships (social, institutional, etc.) [ ], and ultimately for regional development [ , ]. in particular, in the case of this peripheral location. eu data [ ] makes evident the low level of transport accessibility in calabria, https://www.tuttitalia.it/calabria/statistiche/popolazione-andamento-demografico/ https://www.tuttitalia.it/calabria/statistiche/popolazione-andamento-demografico/ sustainability , , of for all modes (rail, air and road). this lag is also true with respect to information and communication technologies, where there is a ‘digital divide’ between calabria, other southern regions, and the central-northern regions [ ]. the poor endowment of infrastructure and services highlighted above calls into question the role of the public sector, as concerns, in particular, services like education, justice, health, and social assistance [ ], of which there is less availability for southern citizens like the people of calabria [ ]. as can be seen, for example, from figure , calabria is the worst region in italy in terms of financial resources spent for social services. this is something that clearly makes the bad social conditions of the population mentioned above (unemployment and poverty) even more dramatic and unbearable. sustainability , , x for peer review of the poor endowment of infrastructure and services highlighted above calls into question the role of the public sector, as concerns, in particular, services like education, justice, health, and social assistance [ ], of which there is less availability for southern citizens like the people of calabria [ ]. as can be seen, for example, from figure , calabria is the worst region in italy in terms of financial resources spent for social services. this is something that clearly makes the bad social conditions of the population mentioned above (unemployment and poverty) even more dramatic and unbearable. figure . italian regions (eu nuts ) by expenditure per capita in social services in (euro). source: our own elaboration on istat data (survey on interventions and social services provided by individual and associated municipalities). lastly, an additional contextual—institutional—factor that significantly affects the economy and society in calabria, and in large areas of the mezzogiorno, is the presence of the mafia organisations (see, for example, [ , ]). the most important mafia organisations in italy are: cosa nostra, in sicily; ‘ndrangheta, in calabria; and camorra, in campania (see also [ ]). as indicated by the map showing the presence of these organisations at the provincial scale (figure ), the mafia constitutes a unique and specific problem for these southern regions, which has several negative effects on the regular economic activities [ – ]. its nefarious activities lead to direct and indirect costs for regular firms, such as extortion and constraints in recruiting workers; it discourages competition, as it uses its criminal power to protect their own ‘legal’ economic activities against potential competitors. these effects are true for any sector, in particular for agriculture, which, as said above, is still relevant in calabria, and which has been suffering more than other sectors from the influence of the mafia organizations ever since the unification of italy ( ). according to many historians and scholars, in fact, this organization was born and developed in rural areas [ – ]. figure . italian regions (eu nuts ) by expenditure per capita in social services in (euro). source: our own elaboration on istat data (survey on interventions and social services provided by individual and associated municipalities). lastly, an additional contextual—institutional—factor that significantly affects the economy and society in calabria, and in large areas of the mezzogiorno, is the presence of the mafia organisations (see, for example, [ , ]). the most important mafia organisations in italy are: cosa nostra, in sicily; ‘ndrangheta, in calabria; and camorra, in campania (see also [ ]). as indicated by the map showing the presence of these organisations at the provincial scale (figure ), the mafia constitutes a unique and specific problem for these southern regions, which has several negative effects on the regular economic activities [ – ]. its nefarious activities lead to direct and indirect costs for regular firms, such as extortion and constraints in recruiting workers; it discourages competition, as it uses its criminal power to protect their own ‘legal’ economic activities against potential competitors. these effects are true for any sector, in particular for agriculture, which, as said above, is still relevant in calabria, and which has been suffering more than other sectors from the influence of the mafia organizations ever since the unification of italy ( ). according to many historians and scholars, in fact, this organization was born and developed in rural areas [ – ]. sustainability , , of sustainability , , x for peer review of figure . mafia presence in italy at the provincial scale ( – ); source: our own elaboration based on fondazione transcrime [ ]. however, the presence of the mafia also has specific cultural and social effects. for example, the presence of organised crime increases local communities’ distrust of public institutions. actually, this is the result of the lack of public institutions in a lawless environment, where the mafia therefore provides private protection to landowners and businesses [ ], gaining social consent and almost substituting the state itself [ ]. considering such extremely serious socio-economic and institutional conditions in calabria, it is rather interesting to explore if and how social agriculture has developed there, and what effects and consequences it is causing for the local society and economy. the next section presents the outcomes of the field investigation which aimed to address all these questions. . methodological approach to the field investigation: direct interviews and thematic analysis as explained in the introduction, as far as our methodological approach is concerned, we followed a case study approach. in particular, we opted for an exploratory and instrumental type of case study. given the shortage of relevant data and literature concerning social farming in southern italy, and in particular in calabria, we decided that the most suitable strategy to pursue our exploratory investigation was to conduct a set of semi-structured direct interviews with representatives of a set of calabrian social farms. in fact, there is still no systematic and reliable list, i.e., an official source about social farms in calabria (and in italy). the only source is the survey at the national level by crea [ ] mentioned in section ; but, as said there, it provides only a very rough picture of this phenomenon. therefore, in order to identify the calabrian social farms which could be the subject of an interview, we used the snowball approach [ , ]. the calabrian social farms are in fact a kind of “hidden population” [ ] (p. ), and therefore this was the only way to find and select them for our figure . mafia presence in italy at the provincial scale ( – ); source: our own elaboration based on fondazione transcrime [ ]. however, the presence of the mafia also has specific cultural and social effects. for example, the presence of organised crime increases local communities’ distrust of public institutions. actually, this is the result of the lack of public institutions in a lawless environment, where the mafia therefore provides private protection to landowners and businesses [ ], gaining social consent and almost substituting the state itself [ ]. considering such extremely serious socio-economic and institutional conditions in calabria, it is rather interesting to explore if and how social agriculture has developed there, and what effects and consequences it is causing for the local society and economy. the next section presents the outcomes of the field investigation which aimed to address all these questions. . methodological approach to the field investigation: direct interviews and thematic analysis as explained in the introduction, as far as our methodological approach is concerned, we followed a case study approach. in particular, we opted for an exploratory and instrumental type of case study. given the shortage of relevant data and literature concerning social farming in southern italy, and in particular in calabria, we decided that the most suitable strategy to pursue our exploratory investigation was to conduct a set of semi-structured direct interviews with representatives of a set of calabrian social farms. in fact, there is still no systematic and reliable list, i.e., an official source about social farms in calabria (and in italy). the only source is the survey at the national level by crea [ ] mentioned in section ; but, as said there, it provides only a very rough picture of this phenomenon. therefore, in order to identify the calabrian social farms which could be the subject of an interview, we used the snowball approach [ , ]. the calabrian social farms are in fact a kind of “hidden population” [ ] (p. ), and therefore this was the only way to find and select them for our investigation. sustainability , , of as claimed by goodman [ ], the population of calabrian social farms can, in other words, be defined as a “hard-to-reach population”, which is a “population for which sampling frames do not exist or are too difficult and/or too expensive to obtain” [ ] (p. ). in these cases, as underlined by biernacki and waldorf [ ], the only way to identify a set of subjects to interview is to use the snowball sampling method. our search for the calabrian social farms was also supported by various other sources, like the websites of the social farms themselves, and press reviews about them [ ] (they were used only in this stage; they were not used as data sources for our investigation on the characteristics of the social farms). in total, we identified and selected nine social farms. the semi-structured direct interviews with their representatives were carried out between november and april . we personally conducted these interviews on the basis of an outline. the outline used, with open questions, was structured in three sections. the first concerns the social mission of the social farms; the second focuses on their characteristics and economic activities; the third focuses on some specific issues concerning only cooperatives. interviews went ahead only after receiving informed consent. these interviews were conducted in the italian language. we analysed the transcripts of the interviews using thematic analysis [ – ]. thematic analysis is one of the basic techniques in qualitative research, and is particularly suitable when researchers conduct applied research [ ]. it is employed to treat qualitative data, especially the verbal expressions that come from open interviews. it aims at “identifying, analyzing, and reporting patterns (themes and sub-themes) within data” [ ] (p. ). the identification of a relevant key theme depends on the judgement of the researcher, “in terms of whether it captures something important in relation to the overall research question” [ ] (p. ). therefore, it is not associated with any quantifiable measures. in our analysis, we identified recurrent themes and sub-themes (not necessarily linked to the outline of the interviews). we frequently used direct quotations in the text in order to provide clear evidence about the relevance and the prevalence of a theme, as is usually done in studies which use thematic analysis (see, for example, [ – ]). in the analysis that follows, the data coming from the direct interviews are not the only data used. other relevant data concerning the nine case studies under examination (for example, data from press reviews, from websites, data about economic performance from balance sheets) were used in order to integrate and complete the information provided by the qualitative investigation. . results of the investigation in calabria . . the set of social farms: basic characteristics the nine social farms which were the object of our field investigation are rather heterogeneous in terms of basic characteristics, such as legal form, location, size, and turnover (see table ). they consist of six cooperatives (f, h, g, i, c, d), one association (e), and two consortia or groups of cooperatives, and/or firms and/or associations (a, b). they are located all over calabria in the main calabrian provinces (reggio calabria, cosenza, catanzaro), both in urban and rural (and mountain) areas. two social farms are located in the province of cosenza (f and h social cooperatives), two in the province of catanzaro (b, and i social cooperative), and four in the province of reggio calabria (e, d, a, c). they have different sizes, as they range from very small (less than ten employees) to big (more than employees), and they have different ages, ranging from about to years. we have, therefore, different organization models. this is something that shows that social farms in calabria are not only young and small initiatives, but some of them are big, organised, and presumably, as we will see later, rooted in the local social and economic fabric. they produce a wide range of agricultural products, most of them linked with the local resources, the territorial specialisations and identities, like olives, citrus fruits (e.g., bergamot), silkworms, and vegetables. moreover, they are engaged in manufacturing activities, like food processing (jams, olive oil, etc.) and handicrafts (ceramics). in addition, they offer a wide variety of services, like didactic sustainability , , of farms, education and training, pet-therapy and hippotherapy, and tourism. most of these farms do not work in one sector/one activity, but, basically speaking, they follow a multifunctional, diversified, model. table . basic characteristics of the calabrian social farms interviewed. social farm location (province) legal form foundation year size * turnover (euro) a reggio c. group of cooperatives, firms, associations big more than mln b catanzaro group of cooperatives and associations big k− mln c reggio c. cooperative medium k− k d reggio c. cooperative small k− k e reggio c. association small k− k f cosenza cooperative small less than k g catanzaro cooperative small less than k h cosenza cooperative small less than k i catanzaro cooperative small less than k notes: * small: less than employees; medium: – employees; big: more than . . . the economic mission: competitive and growing social farms, part of innovative networks most of the interviewees emphasised the good performance of their economic initiative. analysing the information collected reveals the growth and expansion of most of these social farms, in terms of variables like turnover, employment, market area, etc. g said that they had increased their activity and employment; f had increased its turnover in the last three years; social farms a and d were also on the increase in terms of turnover. in the case of a, for example, which is the biggest farm in our investigation, the turnover in the last year was . million euro, and had been increasing in the previous years, while they employ more than hundred people. most of these social farms say that they are expanding their market area, even at the national and international level (c, a). one the key strategies employed in order to grow is diversification: focusing on market segments (organic, quality products, ethics, etc.) which are on the increase at the macro-level (see, for example, [ ], as concerns the global trends in the organic food market; [ ] on the latest trends of the agricultural sector in southern italy), the farms diversify by proposing new and innovative products and services. for example, in some cases, they cultivate new agricultural products, like pomegranates, which are greatly increasing in the agricultural markets (see, for example, [ ]). they also specialise in new organic agri-food products. this is the case of c that produces new types of pesto, based on local products, like chili pepper and olives, controlled and certified; and of a, which, for example, is the only producer of organic cipolla di tropea in italy. a is also increasingly diversifying, by investing in nutraceuticals and cosmetic products (see, for example, [ ]), and also in traditional hand weaving, for which they have created a new brand, which is being successfully promoted on the market. textiles and clothes is a sector in which other interviewees are involved, like e, which is starting to produce a new kind of cashmere from goat hair. that last social farm has as its core activity hippo-therapy, which was a completely unknown service, ignored in calabria, before then . . . .: ‘when we started, in this field there was nothing, there was much improvisation ... tabula rasa ...’ interestingly, innovation for these respondents is not only of an informal and incremental nature. some of them do, in fact, also invest in research and development, as in the case of a, which is creating a new r&d unit focused on nutraceuticals, cosmetics, and curative products based on the typical agricultural products of calabria (citric, olive oil). moreover, they are doing research and innovation in cooperation with other entrepreneurial and institutional actors, meaning that they are able to network. d, for example, participates in projects sustainability , , of in cooperation with universities concerning agricultural development (focused, for example, on the cultivation of the prickly pear). e also works on a project involving hippo-therapy (focused on the ability of horses to perceive and recognise disability, by studying the stress level of horses—in terms of their heart rates—when they are close to disabled people). interviewees also pay special attention to the strategies of distribution and commercialisation, which are actually rather varied and modern. e-commerce, ethical purchasing groups, direct selling, specialised shops, large multiple retailers, etc.: those are the many channels of distribution that characterise the market strategies of these social farms. again, this is interesting in the case of the biggest social farms interviewed. a promotes and develops important brands in the fashion sector; and also in the organic food sector. and even more interesting is the case of c that has several modern channels of distribution. they range from large multiple retailers to shops specialising in ethical products, which are produced by cooperatives associated with libera (working in property confiscated from the mafia), to school canteens which use organic products grown by c in their meals, and to private restaurants which either use their products in their dishes or sell them directly to their customers. that means a high familiarity with, and ability to operate in, the agri-food final markets, at the national and international scale. . . the social mission: activities and services for the local community if, on the one hand, most of the calabrian social farms are able to be competitive and to expand their business, on the other hand, they are also able to accomplish their social mission, which is actually the fundamental goal of their existence. considering the four types of social activities and services that social farms can provide in order to be classified as such according to italian law (law / ), as indicated in the introduction, the results of the interviews show that these farms are able to offer and effectively cover this range of activities and services. interestingly, not all these farms use public funds (for example, eu funds) in order to provide social services, but they use either revenues from production activities (sales) or donations. for example, f, a small social farm, said that they do not use public funds, but % of its revenues come from sales, and % from donations. although we could not collect sufficient and complete data concerning this issue, in many cases the interviewees told us that their ‘dependence’ on public funds is declining, thanks to the upward trend of their market sales. first, starting with the inclusion and employment of disadvantaged and vulnerable people, the results of the direct investigations show that the nine calabrian social farms host different types of disadvantaged people: disabled people, drug addicts, the long-term unemployed, children in problem families, immigrants, etc. for example, h employs (for about four months in the year) disabled people for the seasonal work related to the production of silkworms. the social mission of f involves employing disabled people in agricultural activities, to whom they also offer several services. in agriculture, they also employ nine immigrant as farmhands, who are housed in a building owned by the cooperative. i does organic farming, employing disabled people, children in problem families, drug addicts, the long-term unemployed, (former) prisoners, and immigrants. interestingly, for some of the interviewees, inclusion through social farming of some kinds of disadvantaged people has turned out to be so effective that some cooperatives then decided to employ other segments of vulnerable people. the experience of b, in this respect, is extremely illuminating: ‘the aim of our cooperative is the integration into its work of disadvantaged people like abused women, etc. ... but over time b has realised that this type of activity lent itself well, became applicable, alternatively, to other groups of disadvantaged people, such as drug addicts, immigrants, etc. . . . therefore, an involvement of other groups in social farming activities is underway.‘ b had recently started the only centre for autism at the regional scale, in which they are going to introduce social farming as well, and this definitely represents an innovation in social assistance in calabria. moreover, they have another social farming project which aims to integrate four people with sustainability , , of psychiatric problems, with low surveillance (one operator goes in the morning, checks how the day is organised, and then another goes in the evening), who then follow an autonomous path of inclusion. these people are entrusted with agricultural production activities, in the strict sense. secondly, as far as the medical, psychological, rehabilitative therapies, using animals and plants, are concerned, again the ability to accomplish the social mission clearly comes out from the interviews. in this respect, the experience of e is extremely interesting. they offer advanced services using animals, like pet-therapy and hippo-therapy. in particular, e offers pet-therapy and hippo-therapy for disadvantaged people (disabled people, children etc.). so, for example, they host on average from three to five disabled children and, in some cases, in cooperation with other associations, they can even host as many as disabled children. in , e registered about / thousands persons as users of its services. schools are important targets involved in the services provided by e: ‘we do projects, for example, with schools and kindergarten. the school contacts us, to do pet therapy, hippo-therapy, and we prepare a program .... there is, for example, the case of a school in gioiosa jonica, which every days brings disabled children for pet-therapy and hippo-therapy . . . ’ thirdly, concerning the projects focusing on biodiversity protection, environmental and food education (and on the promotion of the knowledge of the territory), the findings of our investigation show that, in several cases, calabrian social farms are engaged in these kinds of projects. this is the case, for example, of c, which offers courses on issues like eco-sustainability, ethical and socially responsible consumption to primary and secondary school students. in this respect, it cooperates with public and private institutions, like the state forestry authority. but, even other interviewees, like b, are paying increasing attention to these issues that are the basis of new common projects: ‘social farming, in its most multifunctional meaning, lends itself well to combining welfare and environmental sustainability ... think, for example, of the discourse on the impoverished public domain, full of abandoned land ... there are many issues that we are trying to link up, also together with a . . . ’ lastly, the fourth sphere of the social mission concerns social activities and services for the local community. in this case, it is worthwhile taking into consideration the experience of f, which, for example, offers services to the local community, like a night shelter, participation in the local markets and small local fairs, door-to-door sales, based also on the strong commitment of the volunteers that come from the local community itself. there is a mutual relationship: on the one hand, the local community represents a strategic partner of the cooperative; and, on the other hand, the latter interprets the needs that the community expresses. this ability to get in contact and cooperate with the local community allowed the initial distrust of the new services related to social farming to be overcome, as witnessed by e: ‘the schools located in this area have all come to us ... initially, we were going around to present our services, to explain what is a social farm ... now they look for us ...’ ‘at the beginning, the main problem to face was the complete lack of knowledge of these structures, the social farms, their pedagogical work, etc. at that time schools were very rigid, they did not easily modify their programmes in order to accept our proposals ... now they seem to be more open to services like ours ... many schools work independently ... some schools have to follow an internal program, and in others the teachers have the possibility to choose ... compared with the past, there is now more direct contact with teachers ... there has been an awareness, that is, a cultural evolution in the local schools . . . ’ . . threats and opportunities for accomplishing the mission of calabrian social farms: three critical issues the interviews made it possible to cast light on the economic and social mission of calabrian social farms. as said in the introduction, this was indeed the basic objective of the field investigation. however, as usual in any type of “open” qualitative action like this, new, unexpected important issues sustainability , , of arose from the interviewees, although they were not the initial focus of the investigation. this is the case in the following three critical questions, which, according to the interviewees, are fundamental and decisive, for the future development of their activity. . . . much too peripheral: the geographical, economic, and institutional isolation the first key issue which pervades, and emerges from, the words of the interviewees, is the question of the isolation. this constitutes a permanent locational disadvantage, which affects the activity of these farms in several ways. indeed, being located in a peripheral area concerns not only geography and accessibility, but also relationships, networks, institutional support, etc. social farms complain first about the high costs of transport and logistics services, compared with their “competitors” located in other italian regions, due apparently to the farms’ highly peripheral location, and to the shortage of efficient and modern transport infrastructures and services, as seen in section . the question concerning the accessibility is clearly emphasised by the interviewees. b, for example, points out the lack of public transport services in its location. although it is located close to the access to the motorway, and close to the shopping centre, all employees and all the users of its services cannot use any public transport services. however, social farms complain not only about their distance from national and global markets (low market accessibility), but also about the distance between themselves, which makes it difficult to establish internal relationships and networks. this means that there is lack of spatial and relational proximity, which can otherwise be a source of external economies (specialisation and agglomeration economies, knowledge spillovers, etc.) advantageous for them (see, for example, [ , ]). in other words, social farms underline that they are isolated even within calabria, as there is lack of clusters of firms as in the industrial districts (which created a successful model of spatial organisation of industrial development in other italian regions: see [ ]). this makes the manufacturing landscape extremely fragmented. one might even say desertified [ ], in the same way as emerged from recent research focused on agri-food firms [ ]. as witnessed by h: ‘we work in a sort of desert, because there are no synergies, no network, and no integration . . . ’ furthermore, according to the interviewees, isolation also concerns the lack of support by the local institutions. they highlight that they are not adequately supported: they feel as if they are “left alone”, “leaderless”, by the local institutions. they complain about the lack of development strategies for the local agri-food sector and for social farming, and the lack of support policies for firms and networks. as said by a, referring to the representatives of the local institutions: ‘they never listened to us during the planning phase of the measures and the actions . . . ’ f is particularly concerned about the effectiveness of the role of the regional government: ‘ . . . the role of the regional government is not adequate, and regional funding, on the basis of the legislation in force, is not timely. moreover, even the definition of the policy guidelines for social farming and social services is not adequate. if the support was adjusted to the actual needs of the cooperatives, our social services could be quintupled . . . ’ according to c’s evidence, this lack of institutional support and leadership means that some important strategies for local economic development are not implemented, while they talk about the potential and the governance of the local agricultural district in the gioia tauro plain area: ‘ . . . .. that of the piana di gioia tauro, a context with a great specialisation in olive and citrus cultivation (in particular the clementines are a product of excellence) . . . however, this district has not been able to create, over time and durably, synergies, networks and organisations capable of effectively engaging in the promotion and enhancement of the typical agro-food products and the landscape of olive and citrus fruits. therefore, the competitive level of the local district/supply chain is low, despite its potential . . . ’ sustainability , , of however, what is also interesting to highlight and observe is that many of these interviewees are able to overcome these difficulties, such as isolation and lack of support by institutions, and are trying to cooperate and build their own networks, which are extremely valuable for their social mission. this is the case, for example, for both the large groups of cooperatives and agricultural firms organised by a, or of the large number of associations and cooperatives organised by b. however, the several linkages of many of these social farms with national institutions and networks also highlight their willingness to overcome the constraints due to their marginal location. for example, some of these social farms are linked to libera, which is a network of associations, social cooperatives, movements and groups, schools, unions, dioceses and parishes, scout groups, founded in by don luigi ciotti, and is present throughout italy with several regional and local branches, and popular for its position against the mafia organisations, and against other corruption and crime phenomena (source: www.libera.it). moreover, the increasing cooperation between many of the social farms is itself a sign that they are able to fight against the disadvantages posed by the geography and by the low ‘institutional quality’ of calabria, as said by b. . . . what kind of people are needed for growing and expanding: professional workers or volunteers? besides the question of isolation, a second relevant issue emerging from the interviews is the shift from non-professional workers to professional workers (according to the italian law / , social cooperatives can have voluntary members), because of the need for adequate technical and managerial profiles as the cooperatives expand their business. in other words, the motivations, skills, and competences of these human resources together constitute a decisive turning point for their growth. producing and selling products on the market, trying to pursue a competitive strategy based on several factors and on specific standards, as seen above, entails that social farms upgrade and raise the skills and the qualifications of their human resources. in fact, although some of these social farms have adequate know-how, in this respect, others are going through a transition phase. in the case of e, for example, the interviewee says that the qualification of their staff is adequate: ‘the two people in charge of our association and of its activities (the president, and her husband) are respectively an engineer and a veterinarian, while the collaborating volunteers are all women, graduates (an accountant, a graduate in forestry sciences, a pedagogist, etc.), coming from the province of reggio . . . ’ instead, in the case of b, one of the biggest social farms where we interviewed, the lack of professional, entrepreneurial, and managerial know-how is one of the most critical questions that they are facing. this shortage greatly undermines the firms’ organization, and the daily processes and activities with which in the past they had experienced various problems: ‘ . . . .. and we had this problem, for example, when we had to close the balance sheets, always at a loss! there was an evident difficulty in terms of the financial sustainability of our activity, so we had difficulty with the payments of many workers.... so many delays in payments ... so, we said: the cooperative must help disadvantaged people, must give them dignity, but it must also stand on its own feet! we have to recruit an adequate number of managerial staff to improve . . . ’ for them, this was a kind of dilemma, especially considering the context, calabria, where they are located: ‘one of our dilemmas is: how to grow up, without losing the ethical dimension, towards legality?’ interestingly, b also tried to overcome this problem by cooperating with other cooperatives (a) engaged in social farming, but which have more experience and competences in entrepreneurship and management. then, through the exchange of knowledge and experience, they can cope with this issue. however, other social farms are concerned about the possible negative effects resulting from this professional evolution of their staff, which essentially means losing their authentic nature, the original www.libera.it sustainability , , of sense of their mission. in fact, one of the main concerns of f, for example, that is currently expanding its activities, is: ‘ . . . . to avoid an excess of professionalisation, and therefore to prevent the risk of the separation of the cooperative from the context in which it performs its social function . . . ’ anyway, the point is that, given its vocation/specialisation in agriculture, as explained in section , calabria does not, in fact, have such a poor education and training system in this sector. in calabria, there are, in fact, sixteen agricultural technical institutes for upper secondary specialised education, which is a high number compared with other italian regions (source: www.agro-polis.it). moreover, a recent investigation of the calabrian agri-food entrepreneurs showed their satisfaction with higher secondary education in agriculture in calabria [ ]. therefore, as underlined by some of the interviewees, although the search for some profiles is difficult, in the end it would be not impossible to find adequate technical profiles (for example, agronomists). . . . the most critical and serious question: the presence of the mafia some of these social farms have been frequently threatened and attacked by the mafia organisations located in these areas. for example, several attacks were suffered by b, c, d, and a. they suffered thefts of machinery and equipment, fires, cut-down trees, death threats, and gunshots, so much that some of them were even put in the spotlight of the main national press, drawing the attention of the public (see, for example: https://www.corriere.it/buone-notizie/ _settembre_ /arma-vincente- la-ndrangheta-si-chiama-a-fattura- -milioni- e -c - e -bcc - fbb e f aa .shtml; https: //video.repubblica.it/mondo-solidale/calabria-noi-imprenditori-agricoli-tra-attentati-e-minacce-loro- ci-attaccano-e-noi-festeggiamo/ / l; https://www.repubblica.it/solidarieta/volontariato/ / / /news/calabria_furti_alle_coop_solidali_che_danno_fastidio_alle_cosche- /). as said by b: ‘now, with the expansion of our activity, we risk meeting new ‘problems’ ... the last incident happened in october, they broke through the roof, and they stole some machines and some tools. as far as other episodes are concerned (fire, devastation of the land), from the investigations, it is clear that they were caused by the mafia organisations . . . ’ and, as also told by d, concerning the attacks that they suffered: ‘mobsters went to our employees who were working on our land that was confiscated [from the mafia], and which was granted to us, and they told them that, if they did not leave the land by the end of the day, they would kill them . . . ” as the interviewees explained, the reasons for these attacks are several. firstly, most of these respondents (d, c, b) work on confiscated land. this land, thanks to the italian law (decree-law february , , n. ) which created the national agency in charge of the administration of assets seized and confiscated from organised crime (https://www.benisequestraticonfiscati.it/), has been confiscated from the mobsters and then re-assigned to subjects (for example, the social cooperatives) who will use it with social objectives [ ]. this is a point that is clearly not easily accepted by the previous ‘owners’ of those properties. secondly, a key reason for this aggression is the growth and expansion of their activity, not only in strictly economic terms, but also in social terms, as they employ an increasing number of people at the local scale, and their work is gaining a good reputation and a greater acceptance by the local community. obviously, this is not appreciated by the local mafia organisations that are used to playing a key dominant, if not exclusive, role in the local economy and society [ ], based not only on their military power, but also on social consent [ ], and on a cohesive localised network of relationships, which make up their social capital [ ]. as said by b: www.agro-polis.it https://www.corriere.it/buone-notizie/ _settembre_ /arma-vincente-la-ndrangheta-si-chiama-a-fattura- -milioni- e -c - e -bcc - fbb e f aa .shtml https://www.corriere.it/buone-notizie/ _settembre_ /arma-vincente-la-ndrangheta-si-chiama-a-fattura- -milioni- e -c - e -bcc - fbb e f aa .shtml https://video.repubblica.it/mondo-solidale/calabria-noi-imprenditori-agricoli-tra-attentati-e-minacce-loro-ci-attaccano-e-noi-festeggiamo/ / l https://video.repubblica.it/mondo-solidale/calabria-noi-imprenditori-agricoli-tra-attentati-e-minacce-loro-ci-attaccano-e-noi-festeggiamo/ / l https://video.repubblica.it/mondo-solidale/calabria-noi-imprenditori-agricoli-tra-attentati-e-minacce-loro-ci-attaccano-e-noi-festeggiamo/ / l https://www.repubblica.it/solidarieta/volontariato/ / / /news/calabria_furti_alle_coop_solidali_che_danno_fastidio_alle_cosche- / https://www.repubblica.it/solidarieta/volontariato/ / / /news/calabria_furti_alle_coop_solidali_che_danno_fastidio_alle_cosche- / https://www.benisequestraticonfiscati.it/ sustainability , , of ‘this is also why we are in the sights of the ‘ndrangheta ... because we grew up ... everything started with the confiscated property, the building where the local mafia clan lived. we are an organisation that gives more and more work, and this bothers them . . . ‘ moreover, a fact even less appreciated by the mafia organisations is that these social farms do not passively ‘accept’ their pressure and their threats, but instead they react, they refuse their intimidation, reporting any event to the local judicial authority. in the past, as some of the interviewees witnessed, they were usually isolated when they first reacted to the mafia organisations and therefore they were perceived as, and they actually were, weak. however, some of them courageously resisted even if they were alone, thanks in particular to the role played by some individuals, as in the case of b and of a. even if it took a great deal of time, the resistance of these people, together with the increasing successes of the central government against the mafia organisations, brought positive effects (see, for example, [ , ]). as said by a, a kind of virtuous cumulative mechanism in terms of consensus rampaged: the more there are organisations (firms, cooperatives, associations, etc.) which are not scared and able to resist to the mafia, the more other subjects (firms, cooperatives, associations, etc.) feel less isolated and find the courage to react, and so on. ‘the founders of a were, alone, at the forefront in the resistance to the mafia, but today even those who initially were scared are getting closer and closer to us . . . ‘ furthermore, the ability to be competitive on the market in terms of factors such as product quality, and the premium paid precisely because they oppose the mafia organisations (see, for example, the studies by marotta and nazzaro [ – ]), further “convince” other farmers to resist: ‘before our initiative, most of the farms could not survive the attacks and the pressure of the mafia, but nowadays we pay cents per kilo for their oranges, and this definitely helps them to resist and survive . . . ‘ ‘ethics is not only right, but also profitable . . . ’ in this respect, fighting against the mafia, and therefore influencing and changing the calabrian society, economy, and culture, has itself become the ultimate social mission of some of these social farms. this is the case for example of a and c, as one of them said: ‘this is a basic aspect of our identity, of our mission in this place: getting in contact, connecting, with cooperatives and firms attached by the ‘ndrangheta, and supporting them in their reaction and resistance to its pressure . . . ’ . conclusions and policy implications our impression, at the end of this exploratory investigation on calabrian social farms, is that practicing social farming successfully in calabria is hard, but not impossible. in most of the cases, that we have had the possibility to investigate and analyse, the findings are rather positive, both as concerns the social mission and economic performance. therefore, our response to our basic research question is that social farming has the potential to make a significant contribution to a new path of development in calabria, not only in social and economic terms, but also in cultural terms. clearly, we cannot state that is the case based on a quantitative evaluation. we are aware that we investigated just nine farms, and their economic weight is rather low in the context of the regional economy. however, our approach, and our conclusion, is based on the qualitative findings, which turn out to be extremely significant, in the light of the research question. most of these farms are able to be competitive on the market, so it means that they are able to exploit at its best one of the main natural vocations of calabria, agriculture. they are, therefore, contributing to the growth of one the most important sectors, agri-food, which is on the increase in the regional economy. they are able to offer valuable and varied social services, one of the most critical sustainability , , of issue as concerns the provision of public services in calabria, so filling an important gap in terms of social assistance in this region. crucially, they have been able to reject and to react against the mafia organisations, becoming a point of reference, almost a symbol, for all farmers who are not willing to accept passively their influence, and for whoever feels the same. in so doing, they are contributing to combat and weaken one the most critical negative factors in the calabrian economy, society, and culture; starting with the rural areas which, as underlined above, are places where historically the mafia organisations are strongly rooted and predominant. the nine cases that we investigated are seemingly able to produce all the five types of virtuous effects/benefits that we identified and mentioned above, based on the (scant) literature of social farming in disadvantaged areas. first, they provide services, re-establishing the link between food and community, responding in an innovative way to its needs [ ], as we have seen particularly in the cases of f and e. secondly, they are part of networks, both formal, for example with universities and schools, public institutions, and informal, with other social farms, exchanging ideas, knowledge and experience, and with associations, local consumers, citizens, and so on [ ]. even though our impression is that they are not as able to establish a number and a range of linkages as, on average, southern social farms do (see section ). probably, the high degree of isolation associated with their location in calabria plays a certain role. thirdly, in some cases, they have been able to create brands, with their own distinctive features [ ], as is the case of a in the fashion sector and in the organic food sector, and c, as concerns ethical products. fourthly, as far as environment and landscape maintenance are concerned, we found that most of these farms specialise in organic farming; and, moreover, in some cases, like c, they also provide education and training in the fields of environment, landscape, and sustainability. lastly, we have found that most of them are able to offer job opportunities not only to disadvantaged groups, but also to professionals. more interestingly, they have achieved these results despite all the geographical, institutional, organizational, cultural, and historical constraints seen above. we could even say that, where others have failed (see, for example, the failing strategy of bottom-up development followed for decades by the central and local governments, as underlined by padovani and provenzano [ ], and servidio [ ]), and where others are not strong enough to fight against some “factors” (see the complaint by local entrepreneurs about the difficulty of resisting the pressure of the mafia), social farming, in its small way (but, nevertheless, very significant, symbolic and ‘educational’), is successful. nevertheless, most of these social farms still need to make progress and to improve in several aspects. therefore, some policy implications of our investigation are clear, as, despite their ability, calabrian social farms cannot be left completely alone in this social and economic ‘mission’. it is fundamental, first, to support social farms in the training and recruitment of technical and managerial staff, helping them to improve their skills and qualifications level. second, it is no less important to subsidise them when they make new investments, in order to increase their technological level and to improve their processes. this is an issue that the data from the crea survey also highlighted. in this respect, digitalisation is a key issue for their growth. third, another direct support concerns helping them to improve the sales and distribution stage, which is fundamental in order to expand their market area, in particular at the international level. as far as other factors are concerned, the priority is to improve the context in which these social farms operate, in terms of location factors like transport accessibility and the quality of local public institutions (bureaucracy). it is fundamental to reduce the disadvantages suffered by these farms due to isolation. furthermore, it cannot be emphasized enough that it is necessary to fight against the mafia organisations, thereby neutralising their ability to adversely affect entrepreneurial activities like those related to social farming. clearly, the farmers cannot win this ‘war’ alone. lastly, as far as the isolation is concerned, and in order to foster networking, social farms, in the same way as other firms in calabria, should join forces with a better support from public institutions. this means, for example, supporting initiatives for integrated rural and local development, based on sustainability , , of bottom-up approaches and collaboration between the private and public sector (as concerns calabria, see, for example, [ , ]). author contributions: supervision, c.m.; project administration, c.m.; methodology, a.d., c.m. and d.m.; investigation, a.d. and d.m.; data curation, a.d..; formal analysis, d.m.; writing—section , a.d. and d.m.; writing—section –section , d.m.; writing—section , c.m. and d.m. all authors have read and agreed to the published version of the manuscript. funding: this study has been supported by the project temegris—“mediterranean technology center for social agriculture and green chemistry”, within the framework of the technical-professional hubs of the calabria region, eu programming period / . the apc was funded by claudio marcianò, department of agricultural sciences, mediterranea university of reggio calabria, loc. feo di vito, reggio calabria, italy. acknowledgments: we are very grateful to the reviewers for their precious comments and to all interviewees for their kind participation in our research. conflicts of interest: the authors declare no conflict of interest. references . di iacovo, f. la responsabilità sociale dell’impresa agricola. agriregionieuropa , . available online: https: //agriregionieuropa.univpm.it/it/content/article/ / /la-responsabilita-sociale-dellimpresa-agricola (accessed on june ). . giarè, f.; borsotto, p.; de vivo, c.; gaito, m.; pavoncello, d.; innamorati, a. rapporto sull’agricoltura sociale in italia. ministero delle politiche agricole alimentari e forestali; rete rurale nazionale: rome, italy, ; available online: https://www.reterurale.it/flex/cm/pages/serveblob.php/l/it/idpagina/ (accessed on june ). . lanfranchi, m.; giannetto, c.; abbate, 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[crossref] © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://journals.openedition.org/aof/ http://dx.doi.org/ . /qds. https://www.ilfoglio.it/giustizia/ / / /news/mafia-ha-perso-falcone-borsellino- / https://www.ilfoglio.it/giustizia/ / / /news/mafia-ha-perso-falcone-borsellino- / http://dx.doi.org/ . /ecag - http://dx.doi.org/ . /j.sbspro. . . http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	social farming in disadvantaged regions: elements from the literature 	the case study area: calabria, a lagging region in southern italy 	methodological approach to the field investigation: direct interviews and thematic analysis 	results of the investigation in calabria 	the set of social farms: basic characteristics 	the economic mission: competitive and growing social farms, part of innovative networks 	the social mission: activities and services for the local community 	threats and opportunities for accomplishing the mission of calabrian social farms: three critical issues 	much too peripheral: the geographical, economic, and institutional isolation 	what kind of people are needed for growing and expanding: professional workers or volunteers? 	the most critical and serious question: the presence of the mafia 	conclusions and policy implications 	references [pdf] frequency of interactions between veterinarians and other professionals to guide interprofessional education. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /jvme. - r corpus id: frequency of interactions between veterinarians and other professionals to guide interprofessional education. @article{kustritz frequencyoi, title={frequency of interactions between veterinarians and other professionals to guide interprofessional education.}, author={m. r. root kustritz and laura k molgaard and john h. tegzes}, journal={journal of veterinary medical education}, year={ }, volume={ }, pages={ - } } 	m. r. root kustritz, laura k molgaard, john h. tegzes 	published 	medicine 	journal of veterinary medical education the objective of this study was to determine the frequency with which veterinarians interact with individuals in other health professions and related fields of work. four thousand members of the american veterinary medical association (avma) were surveyed. demographic information was collected, and participants were asked how frequently they interacted with members of various professions. general comments were solicited regarding which professions veterinarians should reach out to in order to… expand view on pubmed vetmed.umn.edu save to library create alert cite launch research feed share this paper citations view all figures, tables, and topics from this paper 	 table 	 figure 	 table 	 table 	 table 	 table view all figures & tables 	parasitism 	drug companies 	veterinary medicine (discipline) 	large citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency the case of veterinary interprofessional practice: from one health to a world of its own 	t. kinnison, d. guile, s. may 	medicine 	 	 	pdf save alert research feed the role of the community pharmacist in veterinary patient care: a cross-sectional study of pharmacist and veterinarian viewpoints 	m. e. fredrickson, hayley terlizzi, rikki horne, stanley dannemiller 	medicine 	pharmacy practice 	 	 	pdf 	view excerpts save alert research feed insights from veterinary interprofessional interactions: implications for interprofessional education (ipe) in the veterinary curricula 	t. kinnison 	medicine 	 	pdf save alert research feed highlighting the role of veterinary pharmacists in zoonotic diseases including covid- 	e. g. stafford 	medicine 	journal of the american pharmacists association 	 	 save alert research feed curriculum review and revision at the university of minnesota college of veterinary medicine. 	m. r. root kustritz, laura k molgaard, erin malone 	medicine 	journal of veterinary medical education 	 	 	pdf save alert research feed zoonotic disease risks for immunocompromised and other high-risk clients and staff: promoting safe pet ownership and contact. 	j. stull, k. stevenson 	medicine 	the veterinary clinics of north america. small animal practice 	 	 save alert research feed references showing - of references sort byrelevance most influenced papers recency an interprofessional role for veterinary medicine in human health promotion and disease prevention 	c. hendrix, c. mcclelland, i. thompson, andrew t. maccabe, charlotte r hendrix 	medicine 	journal of interprofessional care 	 	 save alert research feed measures of interprofessional education and collaboration 	jennifer e. thannhauser, s. russell-mayhew, c. scott 	medicine 	journal of interprofessional care 	 	 	pdf save alert research feed relationships of power: implications for interprofessional education 	l. baker, eileen egan-lee, m. a. martimianakis, s. reeves 	medicine 	journal of interprofessional care 	 	 save alert research feed promoting wellness through nurse-veterinary collaboration 	r. johnson, r. meadows 	medicine 	western journal of nursing research 	 	 save alert research feed effect of clinician communication skills training on patient satisfaction 	j. brown, myde boles, j. mullooly, w. levinson 	medicine 	annals of internal medicine 	 	 save alert research feed some historical notes on interdisciplinary and interprofessional education and practice in health care in the usa 	d. baldwin 	medicine 	journal of interprofessional care 	 	 save alert research feed survey of undergraduate pain curricula for healthcare professionals in the united kingdom. 	e. briggs, e. carr, m. whittaker 	medicine 	european journal of pain 	 	 	pdf save alert research feed strategies for collaboration in the interdisciplinary field of emerging zoonotic diseases 	r. m. anholt, c. stephen, r. copes 	medicine 	zoonoses and public health 	 	 save alert research feed a longitudinal study of the effect of an interprofessional education curriculum on student satisfaction and attitudes towards interprofessional teamwork and education 	v. curran, d. sharpe, kate flynn, pam button 	medicine 	journal of interprofessional care 	 	 save alert research feed the effectiveness of interprofessional education: key findings from a new systematic review 	s. reeves, m. zwarenstein, + authors m. hammick 	medicine 	journal of interprofessional care 	 	 save alert research feed ... ... related papers 	abstract 	figures, tables, and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue reviews  in  clinical  gerontology http://journals.cambridge.org/rcg additional  services  for  reviews  in  clinical  gerontology: email  alerts:  click  here subscriptions:  click  here commercial  reprints:  click  here terms  of  use  :  click  here what  is  person-­centred  care  in  dementia? dawn  brooker reviews  in  clinical  gerontology  /  volume    /  issue    /  august   ,  pp    -­   doi:   . /s x,  published  online:    july   link  to  this  article:  http://journals.cambridge.org/abstract_s x how  to  cite  this  article: dawn  brooker  ( ).  what  is  person-­centred  care  in  dementia?.  reviews  in  clinical  gerontology,   ,  pp   -­  doi: . /s x request  permissions  :  click  here downloaded  from  http://journals.cambridge.org/rcg,  ip  address:   . . .  on    aug   reviews in clinical gerontology ; – c! cambridge university press printed in the united kingdom doi: . /s x what is person-centred care in dementia? dawn brooker bradford dementia group, university of bradford, uk introduction the term person-centred care has become all- pervasive on the uk dementia care scene. it has been suggested that it has become synonymous with good quality care. it seems that any new approach in dementia care has to claim to be pc (person-centred) in order to be p.c. (politically correct). the term is used frequently in the aims and objectives for dementia care services and provision in the uk and the us, although what lies behind the rhetoric in terms of practice may be questionable. although the term ‘person-centred’ has been used in psychotherapeutic parlance for many years, it was not used in relation to dementia care until relatively recently. the term person-centred care has its origins in the work of carl rogers and client-centred psychotherapy. the term ‘person- centred counselling’ replaced ‘client-centred’ over the years, as a reflection of the importance of seeing the person seeking counselling as being the expert on themselves, and the therapist being a facilitator in their search for self-actualization. most person- centred psychotherapy has been practised with adults who are cognitively intact. the influence of rogerian thinking has been enormously influential, however, on the general way in which we construe therapeutic relationships and emotional difficulties. despite the influence of carl rogers on practice, prior to the writing of the late professor tom kitwood, the term was not used in the dementia care field. the first kitwood reference to person-centred approaches in was to distinguish them from approaches that emphasized the medical and behavioural management of dementia writing in the year before his death, kitwood wrote that he used the term to bring together ideas and ways of working that emphasized communication and relationships. the address for correspondence: d brooker, bradford dementia group, school of health studies, university of bradford, unity building, trinity road, bradford. bd bb uk. term was intended to be a direct reference to rogerian psychotherapy with its emphasis on authentic contact and communication. person-centred care, however, in relation to people with dementia has become something rather different from the application of rogerian psychotherapy with a new client group. this is due, in part, to the fact that rogers was only one of the influences on psychosocial models and ways of working in dementia care. both kitwood’s view of person-centred care and feil’s validation therapy also drew heavily on psychoanalytic as well as humanist models. in the us, the work of sabat was influential in shaping thinking about people with dementia as having a selfhood. rader’s work on compassionate care and the more radical ideas of thomas in describing the eden alternative, placed the person with dementia clearly in the centre of the care setting. seeing the person with dementia as an individual with rights and a need for sensitive interaction also had its roots in activities such as reality orientation, individualized care planning and needs assessment, the growing dissatisfaction with institutionalized care and codes of practice and social role valorization. it is a mark of success that person-centred care for people with dementia has entered the accepted way in which we talk about service provision within the uk to such an extent that person-centred care for older people (not just those with dementia) is standard of the national service framework. this sets out a ten-year plan for the development of health and social care services for older people. by , all health and social care organizations within the uk are requested to report on their progress towards this standard. the uk alzheimer’s society person-centred care standards for care homes provides a comprehensive set of standards and key questions to help organizations reflect on their practice. benchmarking of person-centred care – has been developed to supplement the department of health’s essence of care document. d brooker defining person-centred care as with many terms that are frequently used, however, there is a tendency for person-centred care to mean different things to different people in different contexts. in my discussions with practi- tioners, researchers, people with dementia and their families, it is obvious that the concepts in person-centred care are not easy to understand or articulate in a straightforward manner. to some it means individualized care, to others it is a value base. there are people who see it as a set of techniques to work with people with dementia and to others it is a phenomenological perspective and a means of communication. in work with people outside the uk using dementia care mapping (dcm), where material often needs to be translated, it becomes even more important to be clear about definitions of words and terminology that are not part of everyday speech. many languages have no direct literal translation for person-centred care. tom kitwood’s writing on dementia is often quoted in relation to person-centred care and it is his writing that guides definitions of what constitutes person-centred care within the context of dcm. his untimely death in , however, means that he cannot clarify his point of view further. many others continue to develop ways of working with people with dementia in a humanistic context. in this article, kitwood’s work will be the backbone for helping to clarify what person- centred care now constitutes in the context of dementia care. the definition of person-centred care is not a straightforward one. person-centred care as it relates to people with dementia has become a composite term and any definition needs to take this into consideration. the elements of the composite can become so convoluted, however, that the definition loses focus and shape. person-centred care encompasses four major elements, all of which have been defined as person- centred care in and of themselves by some writers. these elements are: ) valuing people with dementia and those who care for them (v) ) treating people as individuals (i) ) looking at the world from the perspective of the person with dementia (p) ) a positive social environment in which the person living with dementia can experience relative wellbeing (s) continuing the style that kitwood had for rep- resenting complex ideas in the form of equations, this is expressed as: pcc (person-centred care) = v + i + p + s this equation does not suppose a pre-eminence of any element over another, nor are the elements directional, but are all contributory. they will now be explored in greater detail. valuing people with dementia and those who care for them (v) rogers certainly had a value base of non- judgemental acceptance of the unique aspects of each individual person. this found its therapeutic expression in unconditional positive regard. an additional complexity for person-centred care within the context of dementia is the definition of the term ‘person’. the philosophers, locke and parfitt, whose definition of being a person depends on consciousness of thought and continuity of memory, would mean that an individual with dementia would not be seen as the same person as their dementia progressed, or indeed as a person at all in the most disabling stages of dementia. using this definition, as dementia destroys the brain, it also destroys the person. hughes provides an argument for taking a view of the person that is a ‘situated-embodied-agent’ rather than one that defines a person by consciousness of thought. defining the concept of a person in this way means that we should aspire to treat people with dementia at all stages of their disability, in the way in which all people would wish to be treated. similarly, kitwood described the person with dementia as ‘a person in the fullest sense: he or she is still an agent, one who can make things happen in the world, a sentient, relational and historical being’ and ‘to be a person is to have a certain status, to be worthy of respect.’ post also argues for solidarity among all human beings regardless of their mental capacity. person-centred care is also about seeing all people as valued. this may be better articulated as a value base that positively discriminates on behalf of all persons who are vulnerable. this has certainly been extended to the staff who work with people with dementia. , on first contact, the moral and ethical basis for person-centred care is rather like ‘mom and apple-pie’. how could anyone person-centred care in dementia disagree that treating people as whole human beings is the right and civilized way to respond to people with dementia? however, a cursory look around service provision or a discussion with people with dementia and their families suggests that people with dementia are not valued by society. – society places a high value on youth and intellectual capacity. those who are elderly and particularly those with dementia are at risk of prejudice which has been called hyper- cognitivism. this is a special type of agism, the victims of whom have cognitive impairment. my personal opinion is that this should be termed ‘dementia-ism’ to help clarify who are the main victims. it is related to other powerful prejudices such as sexism, racism and agism but it also exists independently of all of these. within services for people who are elderly, those who have dementia often appear to have to suffer a double jeopardy of age and cognitive disability. this discrimination is evident in service provision, resource allocation, research funding, media coverage, policy priorities, professional training and status. dementia-ism underpins many of the shortfalls within service provision. its eradication has to form part of the definition of person-centred care, if people with dementia are to be admitted as full members of the ‘people club’. if this part of the definition is not made explicit in value statements, training, staff selection, standards, policies and procedures, national frameworks etc., then services will not maintain a person-centred approach for long. treating people as individuals (i) the most concrete implication of person-centred care that sometimes becomes its whole definition, is about taking an individualized approach to assessing and meeting the unique needs of people with dementia. this element of the defini- tion encompasses all those ways of working that consider men and women with all their individual strengths and vulnerabilities, and sees their dementia as part of that picture rather than as defining their identity. this approach again has resonance with the work of carl rogers, for whom each client was a unique and whole person. clare et al. also gives emphasis to the whole indi- vidual – ‘dementia is more than simply a matter of brain decay. people contribute a unique personality and a set of life-experiences, coping resources and social networks’. likewise, stokes sees the uniqueness of individuals as a major part of his definition of person-centred care. he expands this model in a very practical way to work with people with dementia who are in distress. archibald defines person-centred care as ‘people with dementia are individual and, as such, each has a different pathway through the illness and so different care needs’. marshall takes a slightly different emphasis, writing that ‘(person-centred care) means, in brief, that care is tailored to meet the needs of the individual rather than the group or the needs of the staff’. still inherent in this view is that the people with dementia are the focus, rather than the categories into which professionals and staff might place them. the uk national service framework has chosen this aspect of person-centred care on which to focus. the aim within this standard is about treating people as individuals and providing them with packages of care that meet their individual needs. inserting a problem focus into the definition, however, can make it difficult to continue to see the whole person. it then becomes similar to the term ‘patient-centred care’ or ‘resident-focused care’, which is also sometimes used interchangeably with person- centred care. although this is clearly linked to the individualized element of person-centred care, it can be constraining in that the person with dementia can only express those individual needs that are covered by being a patient. there is an element of person-centred care here, but the term suggests that the person is defined by their status as patient rather than their individuality. it does, however, signify a desire to focus on the patient (or resident). this is usually done with the intent of protecting the vulnerable from being disempowered by a large bureaucratic organization and, as such, would be in accordance with the first element within the definition of person-centred care presented above. looking at the world from the perspective of the person with dementia (p) person-centred care is part of the phenomenolo- gical school of psychology. in this, the subjective experience of the individual is seen as reality, d brooker and hence the starting point in explaining their behaviour and therapeutic approaches to change this. rogerian person-centred therapeutic approaches would see entering the frame of reference of the individual and understanding the world from their point of view as key to working therapeutically. likewise, feil’s validation therapy takes entering the subjective world of the person with dementia as its starting point. kitwood certainly recognized the centrality of understanding the individual needs of people with dementia to give a focus for interventions. stokes also highlights understanding the subjective experience as key to a definition of person-centred care. clare et al. define person-centred approaches to dementia care as focusing on ‘understanding the experience of dementia in terms of the person’s psychological responses and social context’, and aim to tailor help and support to match individual needs’. thus they take the starting point for meeting individual needs as understanding the experience of the person with dementia. putting oneself in the shoes of someone with dementia is not an easy or trivial process. kitwood described ‘seven access routes’ by which dementia care practitioners could deepen their empathy toward people with dementia. dementia care mapping was in part an attempt to help care practitioners put themselves in the place of people with dementia when evaluating the quality of care. kitwood described dcm as ‘a serious attempt to take the standpoint of the person with dementia, using a combination of empathy and observational skill’. it has only really been in the past ten years or so that researchers have written seriously about the perspective of individuals with dementia. , in dementia research, phenomenological research into the early experience of alzheimer’s disease , is now well established. in quality-of-life research, self-report measures on subjective well-being and satisfaction with care have been developed relatively recently. similarly, in dementia care practice, engaging directly with people with dementia in a therapeutic sense is a relatively new phenomenon. the work of killick and allen has been extremely influential in the uk in helping practitioners attend to the person with dementia in imaginative, creative and reflective ways. without these insights that put the person with dementia in at the centre of care, how can we define any approach as person-centred? a positive social environment (s) this part of the definition is about the care that promotes relationships between people. rogers saw relationships as key to therapeutic growth and change. he highlighted the importance of the relationship and therapeutic alliance in person- centred counselling. as verbal abilities are lost, the importance of warm, accepting human contact through non-verbal channels becomes even more important than before. in a series of in-depth interviews in long-term care, out of the residents interviewed highlighted relationships, particularly friendships and reciprocity in care- givers, as being important. kitwood’s view of person-centred care for people with dementia was that it took place in the context of relationships – person to person was the title of kitwood and bredin’s publication which was the first practical book on what person-centred care constituted. personhood is central to kitwood’s writing on person-centred care. he defined it as ‘a standing or status that is bestowed on one human being by others in the context of relationship and social being. it implies recognition, respect and trust’. bond also includes the context of relation- ships within his description of personhood ‘. . . individuals do not function in isolation, they also have relationships with others; all human life is interconnected and interdependent’. again, ensuring that people with dementia have the opportunity for social and loving relationships with those around them seems so obvious that surely we do not need a definition of care to tell us this? however, again, even a cursory examination of care provision shows that this is not the norm. kitwood’s writing on ‘malignant social psychology’ and the importance of interpersonal process in dementia clarify why this seems so difficult to achieve in practice. , , with the onset of dementia, individuals are very vulnerable to their psychological defences being radically attacked and broken down. as the sense of self breaks down, it becomes increasingly important that the sense of self is held within the relationships that the person with dementia experiences. these relationships cannot be developed through the traditional therapy hour as in person-centred psychotherapy. rather the development of relationship occurs through the day-to-day interactions. the psychological needs person-centred care in dementia are identified as comfort, attachment, occupation, identity and inclusion. although these needs can be seen as universal, the disabilities associated with dementia mean that they have to become the main foci of person-centred care in this context, if personhood is to be maintained. kitwood described what a positive social psychology might look like for people with dementia rather than the negative malignant social psychology which pre- vailed in his earlier writing. he used the term ‘posi- tive person work’ to describe ten different forms of interaction that would maintain personhood. although some of his writing and ideas may have been difficult to grasp by those providing direct care, the creation of dementia care mapping (dcm) provided a means of very concrete feedback on the quality of person-centred care in this respect. dcm provides staff with feedback about how the people in their care are experiencing daily life. this information can be used to plan more person-centred care on an individual, group and organizational level. , , dcm has been used extensively for driving organizational change towards person-centred care both in the uk and increasingly around the world. dcm is currently being revised and the new version will undoubtedly place a much greater emphasis on evaluating the positive social psychology as the current version does in eliminating the malignant one. the practice of caring for very vulnerable people with dementia in large groups with low staffing levels, however, can place care workers in an intolerable bind when trying to provide a positive social psychological milieu. how to balance the needs of one individual who requires lots of attention against the needs of the wider group, who may be equally needy but make less show of it, is one that faces dementia care practitioners day in, day out. case-studies , pay testament to the imaginative and committed work of many care practitioners in this field. a number of ways of working with people with dementia can be captured under the umbrella term of person-centred care. the british dementia care scene has been described as having gone through a renaissance in the past ten years. , certainly the amazing wealth of innovative practice presented in the pages of the journal of dementia care would have been just as mind-boggling to a dementia care practitioner in the mid- s as telecommunications would have been to a scientist from . life-story work, reminiscence, creativity, play, doll therapy, pet therapy, sensory therapies, psychotherapy have all been written about with people with dementia. central to these ways of working is the facilitation of social confi- dence and communication at an emotional level. rather than seeing people with dementia as the ones having problems and those who are caring having none, kitwood suggested that many of the problems experienced in dementia care are interpersonal. they occur in the communication. he suggests we need to view the relationships between ‘carers’ and ‘cared-for’ as a psychothera- peutic relationship and, in this respect just as in psychotherapeutic work, the helpers need to be aware of their own issues around caring for others. in person-centred care, the relationships between all people in the care environment should be nurtured. towards a model of person-centred care the term ‘person-centred approach’ to care was first used by kitwood to differentiate ways of working with people with dementia that was not framed within a biological or technical model. understanding and expertise in the provision of person-centred care has developed enormously since the term was first used. different elements of person-centred care have been articulated. if this definition also works as a model, it should facilitate some predictions of what might happen if only certain elements of person-centred care are in place whilst others are neglected. the following observations are based on the experience of working with many care facilities for people with dementia. they are summarized diagrammatically in figure . the first part of the model (v) is anti-dis- criminatory practice for people with dementia and those who work with them. the rights of people with dementia are certainly more recognized than they were even five years ago due, in large part, to the work of alzheimer’s associations around the world. also, people are being diagnosed earlier in greater numbers and the current cohort of people in their seventies feel more empowered to speak out against authority than previous cohorts. the push for anti- dementia-ism, however, has largely come from people with dementia themselves. it is not explicit in the value statements of many care organizations or in government policy. the danger in not making it explicit is that the d brooker figure towards a model of person-centred care for people with dementia pressures of dementia-ism are so powerful in society that they will erode attempts at person- centred care that are not firmly built on a strategy of positively valuing individuals with dementia within the context of care. standard one of the uk national service framework is about rooting out age discrimination. this is entirely laudable. however, it only addresses part of the prejudice for people with dementia. if their services are to be person-centred along with everybody else’s, then dementia-ism needs to be rooted out with equal energy. on the other hand, if person-centred care is seen only as a value base, then it can quickly become seen as a group of empty words, or evangelism without a practical application and a body of knowledge. there are some people who can extrapolate practice very easily from a value base, but many others need the implications to be spelt out in rather more concrete terms. the second element (i) is the focus on the individual. if person-centred care is just taken to mean individualized care without the other elements of the definition, then care can quickly deteriorate into serving needs within a very narrow frame that makes very little difference to the lived experience of dementia. taking an individualized approach to care will usually entail trying to see the world from the perspective of the person with dementia. however, it is possible to do individualized assessments and care, without considering the viewpoint of the person with dementia at all. in these cases, the assessment would generally focus on constructs entirely determined by the professional perspective. all the residents in a facility can have individual care plans that are different from each other, but may not prioritize the things that are important for each individual at all. on the other hand, if the practicalities of complex individual needs are not assessed and catered for, then the provision of person-centred care becomes too chaotic to be deliverable. the third element (p) is about taking the perspective of the person with dementia as the starting point. if this is all that person-centred care is taken to mean, then a lot of information is generated which never makes a difference to people’s lives. filing cabinets in care facilities around the world are full of information about people’s lives but still care staff will not know even the rudimentary facts. the individual’s perspectives need to be used if they are to be part of person-centred care. on the other hand, without the personal perspective, care becomes little more than guesswork. the level of challenging behaviour is likely to be high as people with dementia struggle to make themselves heard. alternatively, person-centred care in dementia people may have burnt out in their attempts and a situation of learned helplessness develops. the fourth element (s) is the positive social environment. these are the interpersonal skills and the individual and organizational wherewithal to make an impact on the lives of people with dementia. if this is all that person-centred care consists of, however, then there is a danger that care becomes mechanistic without reference to individual needs and perspectives. without a strong value base, the reason for using these tools in the first place becomes obscured and a slavish following of technique can occur. on the other hand, if care workers, family members and organizations do not have the skills and techniques to provide a positive social environment for people with dementia, then confusion and distress will reign. the organization is likely to place an emphasis on care practices that promote the safety of property and residents and on the aesthetics of the physical care environment. conclusions fundamental improvements in person-centred care for people living with dementia will not occur until the policy agenda is aligned with the agenda for people with dementia. in clinical gerontology, in the fields of practice and research, we need to be able to articulate what it is we mean by person- centred care if we are to influence that agenda. person-centred care for people with dementia does not equate with person-centred counselling any more than it equates just to individualized care. it has become a shorthand term for encompassing a whole movement in dementia care which is more far-reaching than either of these things. it is easy to be woolly with such an over-used term. by understanding the different elements of a tentative model of person-centred care, it is hoped that some light can be shed on why it is often so difficult to achieve in practice. of course, the acronym vips also stands for very important persons, which is an easier way of defining the outcome of person- centred care for people with dementia. acknowledgements thanks to duncan boldy, errolyn bruce, murna downs, hidetoshi endo, shannon jarrott, kathy laurenhue, claudia lai, britta maciejewski, virginia moore, tomo ohtagaru, beate radzdey, willie rueckert, phil sloane, claire surr, paivi topo, kim wylie. references morton i. person-centred approaches to dementia care. bicester: winslow, . packer t. does person-centred care exist? j dementia care ; : – . rogers cr. on becoming a person. boston: houghton mifflin, . kitwood t. the technical, the personal, and the framing of dementia. soc beh ; : – . kitwood t. dementia reconsidered: the person comes first. buckingham: open university press, . feil n. the validation breakthrough. cleveland: health professions press, . sabat s. the experience of alzheimer’s disease: life through a tangled veil. oxford: blackwell, . rader j. individualised dementia care: creative, compassionate approaches. new york: springer publishing company, . thomas wh. life worth living: how someone you love can still enjoy life in a nursing home. the eden alternative in action. acton, ma: vanderwyk and burnam, . holden up, woods rt. reality orientation: psychological approaches to the confused elderly. edinburgh: churchill livingstone, . barrowclough c, fleming, i. goal planning with elderly people. manchester: manchester university press, . kings fund. living well into old age: applying principles of good practice to services for elderly people with severe mental disabilities. london: kings fund, . wolfensberger w. social role valorisation: a proposed new term for the principle of normalisation. ment retard ; : – . department of health for england & wales. national service framework for older people london: hmso, . alzheimers’s society. quality dementia care in care homes: person-centred standards. london: alzheimer’s society, . baker cj, edwards pa the missing link: benchmarking person-centred care. j dementia care ; : – . baker cj, edwards pa, packer t. assessing need and providing person-centred support. j dementia care ; : – . baker cj, edwards pa, packer t. care monitoring must itself be monitored. j dementia care ; : – . d brooker department of health. the essence of care-patient focussed benchmarking for health care practitioners. london: hmso, . bradford dementia group. evaluating dementia care: the dcm method, seventh edition. bradford: university of bradford, . brooker d. dementia care mapping: a look at its past, present and future. j dementia care : : – . hughes jc. views of the person with dementia. j med ethics ; : – . kitwood t, 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( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a scholarly dialogs a ( - ) pet therapy in geriatrics: a social and medical relationship antonio pugliese annamaria pugliese department of veterinary sciences, department of clinical and experimental medicine university of messina, messina, italy abstract pet therapy is an innovative science that finds valid intervention strategies not only for treating psycho-physical diseases but also for improving the quality of life. the areas of intervention concern various fields: pedagogical, psychological, social and health care. improving the welfare state of certain categories of people, including the elderly. the contact with the animal demonstrates not only positive influence on social and individual parameters, such as interaction and communication, but is also effective on behavioral parameters, reducing agitation, stimulating creativity, curiosity and observation capacity, and affectivity with improved depression and anxiety. in complementary therapies, pet therapy, either animal assisted activity (aaa) or animal assisted therapy (aat), is able to modify the state of the present by providing some well-being in the elderly in treatment. a therapy that goes beyond from the severity of the patient's status but could also benefit in those cases of particular gravity as alzhaimer's. the use of this therapy in elderly people who can record a physiological aging of their functions, such as dementia and alzheimer's, also has a strong emotional, cognitive and relational stimulation, a recovery of autobiographical memory, an increase in sense of self-esteem and self- efficacy, a push towards eagerness and social interaction. a therapeutic geriatric, which works mainly on emotions, modifies quantitatively the behavioral and cognitive changes of patients and, by integrating with traditional drugs, improves the state of well-being and quality of life. key-words: pettherapy; geriatrics; social impact of pet therapy corresponding author: antonio pugliese - apugliese@unime.it introduction pet therapy is a new science which provides valuable methods of intervention not only in treatment of psycho-physical pathologies, but also for improving the quality of life. there are various fields of intervention: pedagogical, psychological, social and public health. several categories of people gain an improvement in their well-being from it, and elderly people are among them. the well-being that an elderly person obtains from contact with a pet is connected to the various mechanisms outlined ( ), in particular to the mirror neurons which show how the greater part of apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a interaction with the environment and of emotional behaviour depends on the ability to perceive and understand other people’s emotions.( ). a prompt understanding of the emotions of others, whether humans or animals, is a necessary prerequisite for that empathetic behaviour which is the basis for relationships between individuals and is very important for explaining the mechanisms on which human-animal relationships are based. humans develop relationships with other living beings, including animals, through their emotions. given that the firing of mirror neurons activates the same neuronal structures (motor and viscero- motor) that are responsible for both our actions and our emotions, observing actions performed by others initiates an immediate involvement of the motor areas which deal with their organization and carrying out. these same mechanisms could be of use for understanding the processes on which pet-assisted therapy with elderly people is based. ( ) contact with animals has been seen to have a positive influence on social and individual parameters such as interaction and communication, but it also has positive effects on behaviour: such as reducing agitation, stimulating creativity, curiosity and observation skills, and on the affectivity, bringing improvement in cases of depression and anxiety. elderly people make up about % of the population and require social and health intervention in relation to various factors. besides the health issues that ageing brings (hypertension, diabetes, cardiac and bronchial problems etc.), there are often problems relating to other factors, such as loss of social function through retirement, bereavements or other stress-engendering events, leaving their homes and moving to care homes, with a loss of social and affective support. all these can lead to an increase in anxiety and depression, which often accentuates the physiological cognitive decline. for all these reasons and given the mechanisms of action already observed in pet therapy, using animals in geriatric medicine offers advantages for both motor and cognitive stimulation and re- establishes affective and emotional connections. it can therefore be said that a pet acts as an real therapy, not only in prevention, but also in the treatment of psycho-physical problems in older people, especially in cases of long-term hospitalization for depression, dementia and alzheimer’s. .functional phenomena of cerebral ageing. before entering in greater detail into the social and health connection between pet therapy and apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a elderly people, the authors believe it useful to mention the functional variations which commonly occur as people age and which become particularly marked, and thus worthy of attention, when longevity reaches the levels that it has today. improvements in living conditions, especially in hygiene and diet, together with advances in medical science have made it possible for the human race to discover the process of ageing, although this is not something it is programmed for. the functional processes of ageing, which vary from one individual to another although the basic alterations are similar, cause progressive changes in organs and systems which are characterized by a general slowing down of biological functions and a decline in organic resilience. firstly, as the third age approaches, the individual undergoes a physiological slowing down of brain functions which are no longer able to maintain certain rhythms and this leads to deficiencies which affect vitality. mnemonic deficiencies are among those which are present, but not always apparent. a characteristic is a reduced connection to recently occurred events, even within the same day, such as not remembering what was eaten that day or the day before, when and what was eaten for breakfast, what appointments occurred on the same day or what people contact was had with. this deficit in short-term memory contrasts with memories of past events which become more clear as one goes back in time and become almost complete when one is dealing with adolescence or youth. together with these deficits in memory there is a drop in attention levels which makes the individual affected by this physiological cerebral phenomenon unable to take a normal interest in everyday life and its issues. this includes relationships and it is as if there were a barrier between the elderly person and the world around them, making them feel detached from it, giving their attention only to their own personal affairs and putting the rest, their family and community as well as their surroundings, at a distance. this drop in attention levels is accompanied by reduced concentration, which makes it difficult to take an interest in a conversation, even to the point where it is impossible to follow its normal development. the same situation may occur when watching television or reading the newspaper, or more probably a magazine which has greater appeal because it is in colour and has more illustrations. a significantly high percentage of patients suffering from the above deficits shows a drop in speed and execution of movement. these are physical deficits and are a consequence of the slow wear and tear process which hard tissues, joints and even muscles undergo over time, giving rise to degenerative and proliferative phenomena which have negative effects on motor functions, apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a thus slowing down executive functions in everyday actions. in the determinism of these deficits there is a correlation between the symptoms and neuroimaging where the indications lie in four main factors : - striato-frontal impairment, which is responsible for executive dysfunction, psychomotor retardation, apathy, reduction of agitation, feelings of guilt and introspection; - pontine hyperintensity, an induction of reduced psychomotor speed; - basal ganglia hyperintensity which leads to impairment in specific tests; - periventricular heterotopia (pvh) with impairment of remember late; - deep white matter hyperintensity which impairs motivation, concentration and decision- making abilities ( ). the progressive evolution of these functional phenomena, which in ageing bring about significant changes, generally and frequently result in two syndromes in elderly people, often in coexistence: depression and dementia. these are psychiatric syndromes, characterized not only by coinciding symptoms but also by a multi-factor aetiology common to both. the shared symptoms include psychomotor retardation, marked emotional instability with sudden short bouts of unmotivated crying or smiling, difficulty sleeping at night, weight loss despite a good appetite and a good diet, inability to describe feelings. there are several causes for these medical conditions, both predisposing or determining, which interact and give rise to the appearance of these symptoms. among the predisposing factors are the changes in society in recent years, such as a fall in the birth rate and a constant and progressive fall in the mortality rate which lead to a simplification or nuclearization of the family together with a gradual ageing of its members. one or two-member families make up over half of families today and it is principally elderly people who live alone. recent statistics indicate that elderly people are also one of the categories most vulnerable to the risk of poverty: families which include at least one elderly person are relatively poorer than other families. there are other contributing causes which, although they are a normal part of a human life, can act as trigger factors. retirement from work, for example, which nowadays occurs when a person is still efficient and active, a house move for various reasons, a move to a care home or a nursing home, any change in habits, loss of social significance, disabilities, bereavement, stressful events, family and friends moving away and loss of social support. all these interlinking factors can give rise to a well of loneliness which, together with fatalism and fading enthusiasm, is a gateway to depression and dementia which are correlated to apathy apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a and loss of trust. when psychological distress is combined with physical impairment, the problems become more serious. depression and senile dementia with regard to the symptoms common to depression and dementia, the authors feel it useful, considering the aims of the therapy under discussion, to describe in greater detail the psychological and somatic symptoms which patients present. the somatic symptomatology lie principally in difficulty sleeping (sleep phase syndrome, sleep apnea syndrome) and disturbed appetite, night-time insomnia and fluctuating appetite, a tendency to fatigue with no perceptible organic cardiovascular or neuromuscular disease, a chronic and generalized tendency to pain over the whole body whether or not muscle or bone lesions are present, a gradual weight loss, nonspecific symptoms which are usually present in other illnesses, as well as denial of being depressed. hypochondria is frequently seen. the psychological symptoms generally observed in cases of depression and dementia are numerous and intensify the physical state of depression. firstly, the mood is almost always sad and dejected and the rare moments of joviality are low- key and with limited participation; there is a frequent tendency to weeping for no apparent reason; patients have frequent thoughts of death and/or suicide, together with feelings of despair and helplessness; there is a marked drop in self-esteem and reduced interest in pleasurable pastimes; feelings of guilt or remorse with a tendency to withdrawal, difficulties in decision- making and planning everyday activities are predominant; there is latent agitation in association with reduced psychomotor ability. various risk factors have a role in the evolution of this complex syndrome and can, with varying intensity, be considered as important elements in development of disease. a family history, recent or remote, of a tendency to depression, previous episodes of isolation, stressful events in earlier life, reduced social support, insecure socio-economic status, functional impairment and cognitive decline. other factors to be added include retirement, serious bereavements, general and marital relationship issues. diseases associated with senile depression. this complex syndrome is often a combination of neurological diseases and intrinsic medical conditions. with regard to lesions of the central and peripheral nervous system, the following are often encountered with depression: acute and chronic vascular damage to the brain, parkinson’s disease, alzheimer’s disease, multi-factor dementia caused by multiple strokes, creutzfeldt- jacob’s disease, pick’s disease, neurodegenerative diseases, epilepsy or epileptic-type apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a syndromes, neoplastic diseases of the central nervous system. intrinsic diseases include thyroid defects, metabolic diseases such as diabetes, hypertension, problems with haemopoiesis, bacterial and immune-based joint disease (rheumatoid arthritis), orthopaedic diseases, endocrine dysfunction (hyperthyroidism, cushing’s syndrome, hypercorticosurrenalism), chronic obstructive bronchitis, cardiovascular disease, infectious diseases, hiv infections, neoplastic diseases and hypoacusia. alzheimer’s disease alzheimer’s disease, first described by the german neurologist in , is associated with depression and senile dementia prevalently after the age of . it is a degenerative disease of brain cells and is responsble for a form of dementia characterized by a gradual decline in intellect and memory as well as changes in personality and behaviour. it is the cause of high levels of disability as it causes a gradual loss of independence which eventually makes patients completely dependent on others for all their daily needs. the symptoms start with difficulty in remembering recent events and become more serious over time; there are changes in behaviour and in spatio-temporal orientation. there may also be cognitive and language impairments (aphasia), inability to recognise people and places (agnosia), and patients may become incapable of washing, dressing and feeding themselves and suffer from delirium and hallucinations. motor symptoms sometimes develop with rigidity of the muscles leading to difficulty in walking and tremors. ( ). nursing homes and care homes following this rapid review of the functional characteristics of ageing with its accent on the more frequent issues, such as depression, dementia and alzheimer’s disease together with the associated diseases, the authors think it useful to draw attention to some aspects concerning elderly people who, for the above reasons, spend the last years of their life in a care home where, obviously, emotional and affective conditions are different to those experienced in their own home. it is to be expected that an elderly person may fall prey to that emotional sub-stratum which ageing brings, where loneliness, depression, exclusion, disability and a feeling of pointlessness dominate and, when the person is in a totally different environment to his or her own world, a worsening of this state and more marked deficiencies are inevitable. specifically, there is a marked loss of affection, respect and self-esteem, with reduced stimulus, prospects and interest; there are few moments of enjoyment and few activities the person is able to take part in and communication and comprehension abilities are lower. ( ) apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a therapeutic intervention. there are no simple strategies for intervention in such complex clinical pictures, where organic and psychological issues are entwined. medication alone cannot be seen as a sufficient response and patients must be viewed holistically if the main objective of bringing them back to a state of well-being, satisfaction, socialisation – in short to an acceptable quality of life – is to be attained. often therapeutic intervention, rehabilitation or even simple care treatments have aims which do not take the patient’s well-being into account: - such as improving cognitive test scores; - keeping biological parameters within normal limits; - rehabilitating the patient and limiting disturbing behavior; - obtaining some modest improvement or maintaining with an effort some cognitive functions. in some cases intervention is almost random and carried out as a mere ethical or moral duty, since the patient’s precarious condition allows for little and results are viewed as unlikely. the most realistic target is to obtain the greatest well-being possible for a dementia patient, reduce pain and distress, banish loneliness and combat the feeling of impotence which afflicts not only the patient, but also the family. so-called complementary intervention can, through empathy and communication, have positive effects on rehabilitation and quality of life. these effects can be visible in cognitive and functional rehabilitation and in preserving the emotional aspects which have a positive influence on both memory and the ability to be in stimulating contact with the enviroment. ( ) . pet therapy pet therapy is comprised in the sphere of complementary intervention. both animal assisted activities (aaa) and animal assisted therapy (aat) can modify the present state and bring some well-being to the patients in treatment. this therapy can be used at all degrees of gravity of the patient’s state, indeed it may bring relief even in serious cases of alzheimer’s disease. to better clarify this concept it is useful to examine ideas previously expressed by otherauthors.( ) which they have been able to give a precise picture of this innovative therapeutic process, both from the point of view of training and of the health care itself. according to bonetta, an act of culture can be interpreted as an animal action where humans become aware of their specificity. as humans move closer to other species, through cognitive pathways and gradual differentiation, they become less autarkic and self-centred. through relationships and cultural exchange with animals, through “communication bridges” with other apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a species and through processes of separation and distinction from them, humans build knowledge of their own being, of their own characteristics and of human identity. what we are looking at is a paradigmatic revolution of the human-animal relationship; a revolution which enhances the cultural, psychological, emotional, cognitive and learning values of the relationship between two interdependent subjects, between which there can and must be encounters, alliances and continuous fusion. therefore, and this is the direction in which pet therapy takes us, there is a vital need of research, experimenting, the spread of new values and new paths and new relationship models which will establish biunivocal human-animal relationships of significant quality and, thus, bringing welfare benefits to both. pet therapy has numerous fields of application and their boundaries are permeable. it involves operatives and researchers from several disciplines which, although sometimes very separate, are ever more frequently engaged in the construction of efficient synergy. its many fields are divided into two categories : animal assisted therapy (aat) and animal assisted activities (aaa), each of which originates projects aimed at specific user groups and backed up by focused methodologies. this classification shows that pet therapy can potentially be used more widely than is commonly thought : it is useful not only in the field of medicine, therapeutics and rehabilitation, but also in education. aat does indeed principally comprise projects connected with medical treatments which target patients suffering from physical and psychological health problems or disabilities. aat intervention is combined with traditional medicine and aims to ease pain and reduce suffering. the pet, with its innate charge of affection, becomes a co-therapist rather than a therapeutic device and makes its contribution through psychological and emotional relationships which help patients to recover their potential resourses and psycho-physical equilibrium. among the most frequently observed benefits of aat are: a prevalence of positive emotions, improvement in mood and in the quality of interpersonal relationships, an increased ability to relax, better resistance to stress agents connected with hospitalisation and disease and lower doses of medication. recent theories in biochemistry confirm all this: precisely because human-animal relationships are emotionally calming for their empathetic basis, production of adrenalin and stress hormones (corticosteroid hormones) is reduced. these data are confirmed by studies on the molecules that the brain produces (endorphins) when there is a flow of emotion and their proven ability to reinforce our immune system defences. ( ). .pet therapy and geriatrics we shall now consider the general character of the application of this innovative therapy, apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a emphasising once again how animals’ age-old relationship with human beings can give rise to indubitably valuable effects which fall into four main categories : - they provide excellent companionship - they give emotional support - they encourage physical activity - they stimulate feelings of responsibility beyond these general aspects, let us evaluate the specific functions of these living beings towards people who, having reached a certain age, can reap these benefits not only when there is a physiological state of ageing but also when there are function-impairing medical conditions. particular attention will be paid to how these effects are related to these people’s life-styles, that is to say whether they live in their own home or in a care home. elderly people living in their own homes who have a well regulated emotional bond with a pet can gain positive effects when there is an imbalance in affectivity and the pet helps to re-open those channels of communication and socialisation which problems linked to ageing may have shut down to a certain extent. in contemporary society, elderly people are no longer considered important in family management and the values acquired through a lifetime of experience are not appreciated or are deliberately ignored. grandparents, our families’ guardian angels, the importance of their affection, the joys of their tender protective embrace are set to one side and the messages they would have to pass on to us are not taken into account. activities carried out with a specifically or generally trained animal allow those skills remaining to develop and this can help promote independence and new-found self-esteem. taking care of an animal also has effects on sense of responsibility and organisation of daily tasks, while being occupied with activities can help to overcome depression, apathy and loneliness. for an elderly person in a care home the company of an animal company means there is a living being to share emotions with, a true companion and faithful friend, capable of giving and receiving affection and encouraging communication and interaction, a stimulus which can revive interest and be a reference point. pet therapy can be used to support physiotherapy and kinesitherapy treatment: the patient can be encouraged by the therapist to carry out specific actions by relating them to the dog. this procedure has been widely used for rehabilitation of deficits in adolescence in pet therapy centre as reported by the university of messina.. this empathetic relationship process is simpler between human and animal than between human and apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a human as, regardless of whether the patients live in their own home or in a care home, it does not involve those functions which may be most impaired by illness, such as language, orientation, memory and critical faculties. animals do not recognise disability and do not discriminate against those who have objecively lower levels of functioning. the ability to identify and participate emotionally in the thoughts and sentiments of others develops through this empathetic process of understanding their emotional signals. an empathetic relationship can also have beneficial effects for caregivers of dementia patients, as has been shown by some authors who observed that relatives of dementia patients who owned a dog or a cat showed fewer signs of stress and burn-out than those who did not own pets ( ). aims of pet therapy the aims of pet therapy in geriatrics can be summed up in the following list of effects: - increasing interest and sentimental and emotional participation; - stimulating the revival or the preservation of sentimental attachment; - stimulating cognitive and/or motor abilities; - strengthening memory and attention; - correcting movement and stimulating perception of it; - stimulating the sense of rhythm; - limiting muscular and postural tonicity with reduction of hypertonicity caused by lesions; - stimulating ideomotor co-ordination; - reducing reactive anxiety; - improving self-esteem and self-control. regarding the targets aimed for, below is a summary of the results that should generally be reached in animal assisted therapy with geriatric patients : - remembering the outline of the orders to give to the dog so as to be understood; - getting the dog ready to go out for a walk; - managing feeding and getting food supplies; - checking health status: vaccinations, treatments, visits to the vet etc.; - perceiving sensory and physical stimulation in response to the animal’s actions (licking, tail wagging, attention signalling, stroking etc.); - obtaining gratifying and comprehensible effects; - stimulation of memory and cognitive processes; - stimulation of attention and concentration; - stimulation of verbal and non-verbal comunication; - stimulation to socialisation. apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a effects of pet therapy. having seen the targets aimed for with animal assisted therapy in elderly people with physiological effects of ageing on their functions, the authors think it useful to also consider the effects of the therapy in the case of the most frequent disorders, such as senile dementia and alzheimer’s disease. senile dementia in cases of senile dementia, the presence of animals, used of course in line with the therapeutic protocols which are the fruits of experience and related scientific knowledge, can produce results pertaining to cognitive parameters, alterations in behaviour and mood, as well as benefits for the cardiovascular system. cognitive parameters since the animal gives gratifying responses, improved attention levels may be observed and this can make it possible to continue traditional rehabilitation activities which had begun to seem tiring and tiresome. pet therapy enables treatment even of patients with marked cognitive deficiencies, with relational problems and affectivity issues. effects on verbal coherence are also seen; indeed there are marked improvements and language becomes more appropriate, communication more fluent and verbal interaction more adapted to context. some authors say that there is a significant general improvement in the field of language. assessment of cognitive states using the sib scale (severe impairment battery) showed an overall improvement in test scores when a dog was present, a marked improvement in the items which explore language ( ). it also has substantial effects on memory since, because of the strong affective component, remembering has a positive effect on mood and the general well-being of the dementia patient. there can be no doubt that contact with an animal stimulates reminiscences and encourages sharing them with both the staff and other patients. reminiscence is a vague and imprecise memory in which emotions are dominant. in the majority of dementia patients, animal-assisted reminiscing activity seems to be particularly pleasant. changes in behaviour. patients who receive aat show a marked decrease in behavioural changes ( ). therapy with dogs in hospitalised patients brings about a significant decrease in psychomotor agitation, aggressiveness, anxiety and apathy and an increase in socialisation and communication ( ) (! ) mood the use of aat can have a positive effect on parameters which regulate mood. particularly apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a noticeable are a lessening of depression and a visible increase in social interaction signals (looking, smiling, touching, physical and verbal contact) together with a decrease in signs of embarrassment ( ). some studies also report an improvement in sensation which reaches the levels the greeks called eu-coenesthesia, or well-being ( ). the authors think it important to underline that some studies and experiences at the pet therapy centre in messina show how the use of animals with patients suffering from medical conditions which compromise vital functions leads to a significant fall in the need for psychiatric medication, with the consequent savings in health care costs. cardiovascular parameters. observed effects of pet therapy on the cardiovascular system are the following : - fall in blood pressure (max. and min.) from the start of the session until the end; - steady blood pressure also in control sessions; - stable heart rate in control sessions; - normalisation of rhythm. thus it can be claimed that, in general, the presence of animals as co-therapists has a calming effect on elderly patients. use of a heart rate monitor also showed that when the patients stroked, lick or even just made eye contact with the animal, the heart rate dropped. biochemical blood parameters no noteworthy variations in the patients’ protein, carbohydrate, mineral and enzyme metabolism were observed during the experiment.. an important finding was that blood cortisol levels undergo a significant reduction in concentration during sessions of both animal assisted activities and animal assisted therapy. in the latter case, concentration was % lower. lipid metabolism has also shown a significant variation with a drop in blood triglycerides being observed ( ). alzheimer’s disease pet therapy, as already mentioned, is a co-therapeutic intervention which, when used together with classic therapies, aims to facilitate reaching of specific targets. in alzheimer sufferers presenting apathy and cognitive problems the aim is to reactivate the person’s past, or biographical dimension, through the relationship with the pet and auto-narration. in this particular case, animal assisted co-therapy aims to help dementia patients, especially in care homes, in social integration and biographical competence, to reduce anxiety and contribute to maintaining the remaining cognitive resources. an interesting experience emerged from a project with alzheimer patients at the fondazione manuli apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a in milan which included pet therapy. the research on a group of patients was coordinated by roberto marchesini and gave some thought- provoking results.( ). in one-hour sessions, dogs of several breeds were used with their pet- partners to carry out specific activities which included: - application activities : referring to the dog without actively involving it; - observation activities: watching the dog as it searched by smell or in a game; - simple management activity. playing an interactive game or dressing the animal the results of this study, carried out with guided interaction for management and observation, enabled some people to better integrate into the group and facilitated conversation with the paramedical staff; talk about an earlier period of life in which dogs were present; being attracted by the animals and a propensity to physical contact and dialogue with signs of well-being and pleasure; mention of the animals’ morphostructural aspects such as coat colour, ear and tail shape, size gave rise to conversation among the patients and moments of sharing and well-being. at the end of the experiment, the targets aimed for had been reached, in particular greater social and conversational integration, including memory and cognitive exercises. general effects after examining the specific effects of pet therapy on elderly people, with particular analysis of changes in cognitive, behavioural, cardiovascular and blood biochemistry parameters, we proceed to consider the effects this co-therapy can have in all kinds of gerontological medical conditions. increased survival rates – studies have shown that when comparing two groups, one treated with the presence of animals and one without, the former benefits from greater longevity. the reasons for this could be: - a less sedentary life-style- physical movement is necessary during the sessions; - lower anxiety levels- due to the calming and and anxiolytic effect of the animals’ presence; - activation of the sympathetic nervous system- which is responsible, through its main neurotransmitters noradrenalin and acetylcholine, for various excitatory functions in organs and systems; - control of cardiovascular reactivity to stress with a drop in heart rate and normalisation of rhythm. various psychological, visual and emotional mechanisms can play a part in determining these effects. specific scores other noteworthy effects are related to neuro-rehabilitation treatment: - joint mobility: movement of the arm, hand and forearm most important; - muscle tone: -is more relaxed and there is an increase in general relaxation; apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a - neuro-rehabilitation treatment is reinforced - functional recovery: quicker, more stable and more easily accepted; - neuromuscular benefits: more evident through psychological channels. medication this co-therapy has a decisive effect on monitoring of drugs administered to this category of patients. the many medical conditions that can affect them make pharmacological intervention frequently necessary. it has been demonstrated that the presence of pet therapy animals, both in care homes and in the patients’ own homes, leads to a decrease in use of hypertension drugs, anxiolytics and psychiatric medication. this is often associated with dilation in dosage. behavioural analysis among the changes in behaviour that can occur during pet therapy, we will examine facial expression, interaction and relaxing. facial expression –our experience supplied clear demonstrations of the effects on facial expression; during pet therapy the face shows interest and is smiling, with indicative movements of the eyebrows, forehead and eyes. these variations derive from the emotions the patient experiences during the sessions. interaction - there is a two-way understanding which is intensified through several actions : touching or stroking the dog, gesturing to call it, watching its movements, calling it or giving it instructions. relaxing- this effect can be perceived when the following are observed: a calm and smiling face, loose arms and legs, interest in talking to others and use of appropriate words. observation of the patients also reveals the absence of the following behaviours or attitudes: - twisting of hands; - folded arms; - touching themselves or other people; - not looking at the animal; - absent expression; - sleeping or remaining silent; - stress; - stiff arms; - crossed legs; - looking away. other physiological and behavioural effects include : apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a - increased communication, - improvement in mood, - decreased anxiety and depression, - improved joint and muscle mobility, - decreased blood pressure. for aat pet therapy, as for all forms of therapeutic treatment, some factors indicating its usefulness should be examined: -indications and e possible side effects - cost-benefit ratio - risk-benefit ratio - frequency of treatment - duration of treatment - side effects - compliance. experience at the messina pet therapy centre and in other institutions where the therapy is carried out shows that strict methodology is essential both to obtain positive results and to ensure that they can be scientifically evaluated and reproduced. conclusions we have outlined the effects of pet therapy in geriatric patients and examined the possible adverse effects which could limit its field of application and proceed to report here the possible advantages of this innovative therapy. even if we leave aside the strong emotional, cognitive and relationship stimulus pet therapy can give to elderly people, we still observe retrieval of autobiographical memory, an increase in self-esteem and autoefficiency, an incentive to conversation and social interaction. pet therapy has beneficial effects – both in quantity and quality – on cognitive and behavioural changes in dementia and alzheimer patients. the increase in communication and socialisation can be observed not only among patients but also with the health care professionals. pet therapy acts mainly on emotion and can be integrated with traditional medication to improve the well-being and quality of life of those patients who have the misfortune to be affected with these medical conditions. conflicts of interest: there is no potential conflict of interest, and the authors have nothing to disclose. this work was not supported by any grant. apmb - atti della accademia peloritana dei pericolanti classe di scienze medico biologiche vol. ( ) issn - doi: . / - / apmb. . . .a apmb - atti della accademia peloritana dei pericolanti - classe di scienze medico-biologiche ( ), :a ( - ) doi: . / - / apmb. . . .a references . pugliese, a ( )., pet therapy: strategie d’intervento e linee guida, seconda edizione armando siciliano editore messina. pp - . rizzolati, g., sinigaglia, c. ( ) so quel che fai. il cervello che agisce e i neuroni specchio. milano, raffaello cortina editore pp . . ballarini g. ( ) oct da pugliese a , ° edizione ; comunicazione emotiva e pet therapy, pp - . congable lg,buckwalter kc, stolley jm. ( ): istituzionalized alzheimer’s clients west j nurs res.; ( ): - . bressan l.c. ( ) la malattia di alzheimer, aspetti clinici e approccio complementare in: l’isola in città come miglioramento della qualità della vita della persona con alzheimer, milano, fondazione manuli-pp. - . bigatello, g. lukrcas,a.,terragni,a., galimberti.m. buttram,d. ( ) terapia assistita con gli animali nella riabilitazione motoria degli anziani non autosufficienti, riabilitazione oggi, , - . bressan, l. bigatello, g. lukrcas, a.,terragni,a., galimberti.m. buttram,d. ( ) terapia assistita con gli animali nella riabilitazione motoria degli anziani non autosufficienti, riabilitazione oggi, , - . bonetta g .( ) citato da pugliese a, nella prefazione del testo pet therapy: strategie d’intervento e linee guida, seconda edizione, messina, armando siciliano editore, pp - . pugliese a.( ), pet therapy: strategie d’intervento e linee guida, seconda edizione, messina, armando siciliano editore, pp - . fritz , c.l., farver, t.b., hart, l.a. , kass p. h. ( ). companion animals and the psychological health of alzheimer patients' caregivers. psychol rep., ( ), - . chibaudi a.( ) la pet therapy in un nucleo alzheimer. un intervento riabilitativo in aiuto alla comunicazione. tesi di laurea in tecnico della riabilitazione psichiatrica. università di milano aa - . . mccabe, b.w., baun, m.m., speich, d., agrawal, s, west ( ) using a therapy dog to alleviate the agitation and socialization of people with alzheimer's disease. j nurs res, oct; ( ), - . . churchill, m., sefaoui, j, mccabe, b.w., baun, m.m. ( ). using a therapy dog to alleviate the agitation and desocialization of people with alzheimer’s disease: arch psychiatr nurs ; ( ) - . . batson k, mccabe b., baun mm ,wilson c ( ), the effect of a therapy dog on socialization and physiological indicators of stress in persons diagnosed with alzheimer’s disease in companion animals in human health. in c. c. wilson & d. c. turner (eds.), companion animals in health (pp. - ). thousand oaks, ca: sage. . franceschini, n. ( ), oct da bigatello . pugliese, a. ( ) pet therapy: strategie d’intervento e linee guida, seconda edizione, messina, armando siciliano editore, pp . anderson, t.j., grégoire, j., hegele, r.a., couture, p., mancini, g.b., mcpherson, r., francis, g.a., poirier, p., lau, d.c., grover, s., genest, j. jr, carpentier, a.c., dufour, r., gupta, m,, ward,r., leiter, l.a., lonn, e,, ng, d.s., pearson, g.j., yates, g.m., stone, j.a., ur, e. update of the canadian cardiovascular society guidelines for the diagnosis and treatment of dyslipidemia for the prevention of cardiovascular disease in the adult. can j cardiol ; : – . . marchesini, r. ( ) pet therapy e alzheimer , in l’isola in città come miglioramento della qualità di vita della persona con alzhiemer –milano, fondazione manuli., pp - © by the author(s); licensee accademia peloritana dei pericolanti (messina, italy). this article is an open access article distributed under the terms and conditions of the creative commons attribution . international license (https://creativecommons.org/licenses/by/ . /). introductory lecture given on april , ; received june , ; published on line june , . [pdf] management of dementia-related agitation: between the devil and the deep blue sea | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /eb- - corpus id: management of dementia-related agitation: between the devil and the deep blue sea @article{passmore managementod, title={management of dementia-related agitation: between the devil and the deep blue sea}, author={michael j. passmore}, journal={evidence-based mental health}, year={ }, volume={ }, pages={ - } } 	michael j. passmore 	published 	medicine 	evidence-based mental health dementia-related agitation is a common and costly condition that is distressing, debilitating, often dangerous and usually difficult to treat in a safe and reliable manner. clinicians are caught between the ‘devil’ of medications with unfavourable risk–benefit profiles and the ‘deep blue sea’ of non-pharmacological interventions perceived as impractical and lacking in evidence for benefit. before opting for any intervention, it is essential to rule out underlying causes of agitation and then… expand view on bmj ebmh.bmj.com save to library create alert cite launch research feed share this paper topics from this paper 	agitation 	pharmacology references showing - of references management of neuropsychiatric symptoms of dementia in clinical settings: recommendations from a multidisciplinary expert panel 	h. kales, l. gitlin, c. lyketsos 	medicine 	journal of the american geriatrics society 	 	 	 	view excerpt, references background save alert research feed benefit–risk analysis for the clinician: ‘primum non nocere’ revisited—the case for antipsychotics in the treatment of behavioural disturbances in dementia 	p. naarding, m. v. van grevenstein, a. beekman 	psychology, medicine 	international journal of geriatric psychiatry 	 	 save alert research feed nonpharmacological intervention for agitation in dementia: a systematic review and meta-analysis 	e. kong, l. evans, j. guevara 	medicine 	aging & mental health 	 	 save alert research feed a systematic review of the clinical effectiveness and cost-effectiveness of sensory, psychological and behavioural interventions for managing agitation in older adults with dementia. 	g. livingston, l. kelly, + authors c. cooper 	medicine 	health technology assessment 	 	 	 save alert research feed related papers 	abstract 	topics 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue more bark, less bite | american academy of pediatrics skip to main content advertising disclaimer » main menu 	journals	pediatrics 	hospital pediatrics 	pediatrics in review 	neoreviews 	aap grand rounds 	aap news 	authors/reviewers	submit manuscript 	author guidelines 	reviewer guidelines 	editorial policies 	open access 	content	current issue 	online first 	archive 	topic/program collections 	blog 	subscribe 	alerts 	careers 	other publications	american academy of pediatrics user menu 	log in 	 my cart search source all journals aap news aap grand rounds hospital pediatrics neoreviews pediatrics pediatrics in review search for this keyword 	advanced search 	 source all journals aap news aap grand rounds hospital pediatrics neoreviews pediatrics pediatrics in review search for this keyword advanced search 	log in 	 my cart 	journals	pediatrics 	hospital pediatrics 	pediatrics in review 	neoreviews 	aap grand rounds 	aap news 	authors/reviewers	submit manuscript 	author guidelines 	reviewer guidelines 	editorial policies 	open access 	content	current issue 	online first 	archive 	topic/program collections 	blog 	subscribe 	alerts 	careers 	 	 		 		 			 			 journal club more bark, less bite 	daniel j. sklansky and eric balighian 	hospital pediatrics june , ( ) - ; doi: https://doi.org/ . /hpeds. - 	 daniel j. sklansky department of pediatrics, university of wisconsin school of medicine and public health, madison, wisconsin; and 	find this author on google scholar 	find this author on pubmed 	search for this author on this site eric balighian department of pediatrics, john hopkins hospital, baltimore, maryland 	find this author on google scholar 	find this author on pubmed 	search for this author on this site 			 		 	 	 	 	 		 		 			 			 	article 	info & metrics 	comments this article requires a subscription to view the full text. if you have a subscription you may use the login form below to view the article. access to this article can also be purchased. download pdf 	animal assisted therapy 	ketamine is animal-assisted therapy useful in improving inpatient comfort outcomes? pets, particularly dogs, are often seen on the pediatric ward for playtime with patients. does evidence suggest that they have a positive effect on measurable outcomes? the study. this randomized controlled trial sought to determine if canine animal-assisted therapy improved pain scores and patient satisfaction in adults undergoing elective knee and hip arthroplasties. patients assigned to the treatment group were visited daily for days by a certified pet therapy dog for minutes before physical therapy sessions. outcomes were determined by using a validated visual analog scale (vas) for pain and the hospital consumer assessment of healthcare providers and systems survey from the centers for medicare and medicaid services to measure patient satisfaction. the key findings. a total of patients were randomized to treatment and control groups, with in each group. those undergoing animal-assisted therapy had lower vas scores. after the first session, the treatment group (vas . , sd . , % confidence interval [ci] . – . ) had an average vas pain score . u lower than that of the control group (vas . , sd . , % ci . – . , p < . ). the final vas score difference at day was . u (p < . ). compared with the control group, the treatment group … view full text 	 		 		 			 			 individual login log in you will be redirected to aap.org to login or to create your account. institutional login via institution you may be able to gain access using your login credentials for your institution. contact your librarian or administrator if you do not have a username and password. log in through your institution if your organization uses openathens, you can log in using your openathens username and password. to check if your institution is supported, please see 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of pediatrics on youtube © american academy of pediatrics psychosocial treatments of behavior symptoms in dementia: a systematic review of reports meeting quality standards international psychogeriatrics ( ), : , – c© international psychogeriatric association doi: . /s printed in the united kingdom r e v i e w psychosocial treatments of behavior symptoms in dementia: a systematic review of reports meeting quality standards ......................................................................................................................................................................................................................................................................................................................................................................... daniel w. o’connor, david ames, betina gardner and madeleine king department of psychological medicine, monash university, melbourne, australia national ageing research institute, university of melbourne, melbourne, australia centre for health economics research and evaluation, university of technology, sydney, australia abstract objective: to provide a systematic review of selected experimental studies of psychosocial treatments of behavioral disturbances in dementia. psychosocial treatments are defined here as strategies derived from one of three psychologically oriented paradigms (learning theory, unmet needs and altered stress thresholds). method: english language reports published or in press by december were identified by means of database searches, checks of previous reviews and contact with recognized experts. papers were appraised with respect to study design, participants’ characteristics and reporting details. because people with dementia often respond positively to personal contact, studies were included only if control conditions entailed similar levels of social attention or if one treatment was compared with another. results: only of relevant studies met every specification. treatment proved more effective than an attention control condition in reducing behavioral symptoms in only of the studies. effect sizes were mostly small or moderate. treatments with moderate or large effect sizes included aromatherapy, ability- focused carer education, bed baths, preferred music and muscle relaxation training. conclusions: some psychosocial interventions appear to have specific therapeutic properties, over and above those due to the benefits of participating in a clinical trial. their effects were mostly small to moderate with a short duration of action. this limited action means that treatments will work best in specific, time- limited situations. in the few studies that addressed within-group differences, there were marked variations in response. some participants benefited greatly from a treatment, while others did not. interventions proved more effective when tailored to individuals’ preferences. key words: dementia, behavior, treatment, evidence, systematic review introduction dementia is often complicated by agitation, aggression, disinhibition and other challenging behaviors. in a british survey, aggression was reported by the carers of % of persons with mild dementia, % of those with moderate dementia and % of those with severe dementia (o’connor et al., ). the number and severity of behavioral changes correlate strongly with carer burden (o’connor et al., ) and thus with admission to aged residential facilities (haupt and kurz, ) where rates of such behaviors are typically high. cohen-mansfield ( ), for example, found that correspondence should be addressed to: professor daniel o’connor, aged mental health research unit, kingston centre, warrigal road, cheltenham, victoria , australia. phone: + ( ) fax: + ( ) . email: daniel.oconnor@med.monash.edu.au. received: january ; revision requested: february ; revised version received: april ; accepted: april . first published online september . % of the residents of a large north american nursing home hit, kicked or threw things each day. antidepressant, antipsychotic and analgesic medications can be effective when behaviors stem from co-morbid major depression, delusions or pain. in remaining cases, antipsychotic medications are preferred by most psychogeriatricians (greve and o’connor, ) but concerns have been raised about their efficacy and safety (schneider et al., ). alternative approaches that seek to relieve behavioral symptoms by means of social, psychological and nursing interventions warrant serious scientific scrutiny. previous reviewers agreed that studies of so- called psychosocial treatments are often too small, loosely designed and poorly reported to warrant clear conclusions (opie et al., ; cohen- mansfield, ; livingston et al., ). to counter this, only papers that met specified quality d. w. o’connor et al. standards are outlined here with the object of guiding clinicians and carers to robustly supported evidence. treatment paradigms three broad, psychologically-oriented paradigms have emerged to explain changed behaviors in dementia and to generate testable interventions to limit their frequency, severity and practical consequences. learning theory asserts that behaviors are reinforced when carers reward them with attention. calling out, for example, increases in frequency if staff members attend to nursing home residents when they are noisy but ignore them at other times. the abc model (antecedents, behaviors, consequences) seeks to reinforce appropriate behaviors and discourage dysfunctional ones (teri et al., ). in the unmet needs paradigm, inappropriate behaviors stem from normal human needs – physical, emotional and social – that carers fail to perceive or address (cohen-mansfield, ). these needs encompass meaningful activity, pleasurable social interaction and freedom from pain. strategies to address them include recreation, physical exercise and adequate analgesia to name just a few. according to the stress threshold model, dementia reduces the capacity to cope with stress, resulting in inappropriate behaviors (hall and buckwalter, ). stress levels can be modulated to tolerable levels by attending to signals of distress and alternating periods of rest and activity. most psychosocial treatments blend elements of all three paradigms. attendance at a music therapy session in a nursing home, for example, might result in (i) positive interaction with staff, thus reinforcing attentive, appropriate behavior; (ii) an opportunity to engage in pleasing, creative activity, and (iii) release from the meaningless, anxiety-provoking commotion of a communal living area. this review addresses three questions: (i) are the benefits of psychosocial treatments just the result of the care and attention that follow from participation in a clinical trial? (ii) do treatments reduce the frequency and/or severity of behavioral symptoms to a degree that matters to patients, families and caregivers? and (iii) does one treatment work better than another? methods this review was compiled in line with australian national health and medical research council recommendations (nh&mrc, a). english language reports published or in press by december of experimental studies of treatments of challenging behaviors in dementia that were derived from one or more psychologically oriented paradigm were sought via: (i) searches of medline, cinahl, psycinfo and cochrane databases, (ii) checks of references in earlier reviews and monographs, and (iii) approaches to nearly researchers who had published in this area in recent years. treatments with a pharmacological, physiological or environmental focus (e.g. psychotropic medications, light therapy and modifications to premises to prevent exiting) fell outside our psychosocial parameter and are reviewed elsewhere (sink et al., ; opie et al., ; cohen-mansfield, ). reviews of many dozens of papers of variable quality have limited value. to make this paper as useful as possible to psychiatrists, psychologists, nurses and diversional therapists, we developed a process to select papers of higher than average quality. research quality checklists typically look for adequate numbers of participants with low drop- out rates; detailed descriptions of participants, in- terventions and controls; reliable and valid outcome measures; suitable randomization and blinding techniques; control of confounding variables, and appropriate statistical analysis (nh&mrc, b; altman et al., ). these criteria are designed with drug trials in mind and do not translate easily to procedural treatments where randomized controlled trials (rcts) are often un- affordable, blinding is impracticable, and retention is compromised by participants’ advanced age and physical frailty (cohen-mansfield, ). some accommodation of the reality of aged care research is therefore justified. well-conducted rcts form the “gold standard” of clinical trials but other designs warrant inclusion too. as an example, “before and after” or repeated measures (rm) studies, in which all participants receive treatment and act as their own controls, are efficient, robust and equitable, especially when treatment and control conditions are allocated randomly and participants are crossed later from one condition to the other. the potential contami- nation of rm designs by learning effects, treatment “carry over” and disease progression are unlikely to be a problem in short-term, non-pharmacological trials in people with marked dementia. inclusion criteria for this overview balanced scientific rigor with clinical relevance. given the focus on cognition and behavior, it made sense to require that all study participants had both dementia and significant behavioral symptoms, or seemed likely to have them by virtue of residence in a “special care” dementia unit or psychogeriatric psychosocial treatments of behavior symptoms in dementia: a review table . process of selecting studies for review d o m a i n e x c l u s i o n c r i t e r i a n u m b e r e x c l u d e d ∗ .............................................................................................................................................................................................................................................. experimental studies of a single psychosocial treatment n = study design non-random allocation to groups in studies with treatment and control arms ↓ n = ↓ intervention intervention poorly described ↓ n = ↓ control baseline or usual treatment only ↓ n = ↓ participants fewer than and/or not all with dementia and/or dementia severity not described and/or not all with behavior symptom ↓ n = ↓ reporting no report of inter-rater reliability in studies with multiple observers or no behaviour data and/or statistical tests ↓ n = ∗some studies were excluded for more than one reason. ward. “treating” people with no behavioral symptoms cannot demonstrate improvement if there is nothing to improve. secondly, studies were included only if a treatment was compared with another treatment and/or an “attention control” condition. life in many nursing homes is so unstimulating that personal attention of any kind relieves anxiety and agitation (garland et al, ). once a study begins, fresh faces appear in the nursing home; residents are offered new activities, and their behavior is monitored more intently than usual. staff or family caregivers who relish involvement with researchers might also rate dementia symptoms more harshly or leniently, depending on their bias. these placebo effects are powerful. agitation responded so well to real, and even simulated, personal contact in studies by cohen-mansfield and werner ( ) and garland et al. ( ) that controlling for non- specific treatment effects is now desirable. control conditions should provide equivalent attention and diversion. examples of attention controls include a general activity session to control for multi-sensory stimulation or a conventional bath to control for one accompanied by music. other requirements, adapted from standard research checklists (e.g. altman et al., ), comprised (i) random allocation in the case of studies with distinct treatment and control arms; (ii) sufficient information about a study’s methods to permit replication; (iii) a total of or more participants; (iv) the use of cognitive and behaviour measures, and (v) some statistical analysis. finally, given the importance of minimizing observer bias, we stipulated that behavior measures must have been collected by persons blinded either to treatment allocation or to the study’s aims or, when the nature of the intervention rendered blinding impracticable, that behavior measures were generated (i) by a single individual, e.g. a family caregiver, or (ii) by multiple individuals with high inter-rater reliability, or (iii) through the use of mechanical or electronic counters. only papers met every prerequisite. the most common reason for exclusion was lack of an attention control condition (table ). a list of d. w. o’connor et al. excluded papers, together with reasons, is available from the authors on request. most of our requirements were straightforward. only a couple required much judgment (e.g. the adequacy of information regarding methodology) but, to reduce concerns of reviewer bias, ( %) of the seemingly eligible papers were coded on the nine key selection criteria listed in table by a second blinded reviewer. agreement rates were very high at . %. as an additional check on quality, papers were graded using a checklist described by forbes ( ) in an earlier systematic review of behavioral treatments in dementia. the scale addresses study design, participation and retention rates, measurement issues and statistical analysis, and has an algorithm to generate ratings of “strong,” “moderate,” “weak” and “poor.” it follows standard pathways but, in contrast to other scales, it makes allowance for repeated measure designs and the use of non-blinded observers. only rcts can qualify as “strong.” effect sizes based on mean differences and standard deviations were calculated for studies that reported sufficient information (rosnow and rosenthal, ). for randomized studies, the effect size was the difference between the treatment mean and the attention control mean divided by an estimate of standard deviation pooled from both groups. baseline means were incorporated if available. we considered an effect size of . to be small, . moderate and . large (cohen, ). results of the selected papers, had been published within the last decade. there were from the u.s.a., six from the u.k. and one each from australia, canada and sweden. nineteen were based solely in nursing homes or long-stay hospital wards. ten were either rcts or nested rcts in which nursing homes (rather than residents) were randomized, and used rm (before and after) designs. all but two of the rm studies added crossover between arms to maximize validity and efficiency. repeated measures studies with randomized cross-over are labeled here as rando- mized cross-over trials (rxt). participant numbers were typically small (mean . , range – ). primary interventions in descending order of frequency were music ( ), carer education ( ), sensory enrichment ( ), simulated family presence ( ), novel bathing techniques ( ), aromatherapy ( ), recreation ( ), relaxation ( ) and validation therapy ( ). additional details are provided in table . it so happened that no papers on pet therapy, physical exercise, reality orientation, reminiscence therapy or low stimulus environments met our specifications and we can make no further comment on them. this is a regrettable but anticipated consequence of our selective process. massage was used as a control condition in a study of music (remington, ). using the forbes quality rating scale (forbes, ), six of the studies were rated as “strong”, as “moderate”, three as “weak” and none as “poor.” all three “weak” studies lost points because of high attrition rates (cohen-mansfield and werner, ; toseland et al., ; teri et al., ). details are presented below. standards varied nonetheless. only reports specified the number of persons screened for possible inclusion; listed numbers of drop-outs; five provided a power analysis; included statistical adjustments for possible confounding variables, and three specified ways of handling missing data. in the interests of uniformity, results are presented wherever possible as the percentage change in behavior symptoms. treatments proved more effective than attention control conditions, to a statistically significant degree, in only of the studies. among these , effect sizes could be computed only for nine. they were mostly small to moderate with large effects just for bed baths versus tub baths (dunn et al., ) and preferred music versus “classical relaxation” music (gerdner, ) (table ). aromatherapy oils extracted from the plants lavendula angustifolia (lavender) and melissa officinalis (lemon balm) have been thought for centuries to have soothing properties. to test this, holmes et al. ( ) sprayed the communal area of a dementia ward with either % lavender oil or water for two hours daily on alternating days. all participants had severe dementia and daily agitation. an observer wearing a nose clip rated behaviors using the pittsburgh agitation scale in the final hour of sessions. median behavior scores were % lower while exposed to lavender compared to water (p = . ). in a nested rct by ballard et al. ( ), severely demented nursing home residents with clinically significant agitation were massaged lightly on the face and arms with either lemon balm or sunflower oil for one to two minutes twice daily for four weeks. blinded observers completed the cohen-mansfield agitation inventory (cmai) before and after this period. scores on the cmai fell by % on average in the melissa group versus % for sunflower oil (p < . ). there were p sych o so cia ltre a tm e n ts o f b e h a vio r sym p to m s in d e m e n tia : a review table . details of selected studies a u t h o r ( s ) / y e a r t r e a t m e n t ( t ) a t t e n t i o n c o n t r o l ( a c ) n s t u d y d e s i g n s t u d y l e n g t h ( w k s ) o b s e r v a t i o n t i m i n g b e h a v i o r m e a s u r e q u a l i t y r a t i n g s t a t i s t i c a l r e s u l t s , e f f e c t s i z e ( e s ) ........................................................................................................................................................................................................................................................................................................................................................................................................................................................... aroma ballard et al. ( ) melissa oil neutral oil nested rct, blinded observers study start and end cmai t > ac∗∗∗ (es = . ) holmes et al. ( ) lavender vapor water vapor rxt, blinded observers during intervention pas t > ac∗ (es = . ) bathing dunn et al. ( ) bed bath tub bath rxt, irr = % during intervention direct observation (cmai) t > ac∗∗∗ (es = . ) sloane et al. ( ) person-centered bed bath person-centered shower rxt, blinded observers during intervention direct observation (cmai) t = ac t > bl∗∗ ac > bl∗ carer education burgio et al. ( ) behavior management training with continued supervision behavior management training without continued supervision nested rct, irr = % during intervention direct observation t = ac gormley et al. ( ) behavior management training discussion groups rct, blinded observers study start and end rage t = ac teri et al. ( ) (a) behavior management training, (b) haloperidol, (c) trazodone rct, irr checked study start and end cgic ta = tb = tc wells et al. ( ) ability-focused morning care usual morning care nested rct, irr r > . during intervention pas t > ac∗ (es = . ) d . w . o ’c o n n o r e t a l. table . continued. a u t h o r ( s ) / y e a r t r e a t m e n t ( t ) a t t e n t i o n c o n t r o l ( a c ) n s t u d y d e s i g n s t u d y l e n g t h ( w k s ) o b s e r v a t i o n t i m i n g b e h a v i o r m e a s u r e q u a l i t y r a t i n g s t a t i s t i c a l r e s u l t s , e f f e c t s i z e ( e s ) ......................................................................................................................................................................................................................................................................................................................................................................................................................................................... music/sound burgio et al. ( ) natural sounds headphone only rxt, irr κ > . during intervention direct observation t > ac∗∗∗ (es = . ) clark et al. ( ) preferred music during bath usual bath rxt, irr r > . during intervention direct observation t > ac∗ (es = . ) gerdner ( ) preferred music classical music rxt, irr = % during, after intervention direct observation t > ac∗∗∗ (es = . ) groene ( ) music therapy reading rct, counting devices during intervention direct observation t = ac ragneskog et al. ( ) music during meal time usual mealtime rxt, blinded observer after intervention gbs t = ac remington ( ) baroque music hand massage rct, irr r > . < during, after intervention direct observation t = ac t,ac > bl∗∗ sherratt et al. ( ) (a) live music (b) recorded music commercial music rm, irr κ > . during intervention direct observation ta,tb = ac thomas et al. ( ) preferred music during bathing usual bath rm, irr checked during intervention direct observation t > ac∗ (es not computable) sensory enrichment baillon et al. ( ) multi-sensory stimulation reminiscence therapy rxt, irr r > . during, after intervention direct observation (cmai) t = ac baker et al. ( ) multi-sensory stimulation activity session rct irr r > . during, after intervention, month later interact t = ac cohen- mansfield and werner ( ) enriched corridor usual corridor rxt, counting devices during intervention direct observation t = ac simulated presence camberg et al. ( ) family audiotape neutral audiotape rxt, blinded observers during intervention direct observation t,ac = bl p sych o so cia ltre a tm e n ts o f b e h a vio r sym p to m s in d e m e n tia : a review cohen-mansfield and werner ( ) (a) family videotape, (b) preferred music (c) social interaction rxt, irr % during intervention direct observation ta,b,c > bl∗∗∗ (es not computable) garland et al. ( ) (a) family audiotape (b) preferred music neutral audiotape rxt, blinded observers during, after intervention direct observation ta > ac,bl¶∗∗ (es = . ) tb > bl¶∗ ac > bl¶∗ other kolanowski et al. ( ) recreation suited to interests and skills recreation suited to interest only or skills only rxt, blinded observers during intervention direct observation t = ac t,ac > bl∗∗ suhr et al. ( ) muscle relaxation training imagery relaxation training rct, single observer study start and end brad t = ac toseland et al. ( ) validation therapy social group rct, irr r > . during intervention direct observation (es not computable) rct = randomized controlled trial, rm = repeated measures, rxt = repeated measures with randomized cross-over. irr = inter-rater reliability, r = correlation coefficient, κ = kappa. quality ratings = strong, = moderate, = weak. ac = attention control, bl = baseline/usual care. ∗p < . , ∗∗p < . , ∗∗∗p < . , ns = not significant. ¶ = physical agitation only. d. w. o’connor et al. positive changes too in social engagement and con- structive activity. bathing bathing routines are potent triggers of agitation and aggression, presumably due to physical discomfort, fear and embarrassment. bed baths, in which residents are washed in their own bed using heated cloths steeped in a non-rinse skin cleanser, provide an attractive alternative. dunn et al. ( ) compared four conventional tub baths with four bed baths in a repeated measures study of dementia unit residents. trained observers counted every occurrence of specified agitated behaviors from the moment of undressing to bath completion. mean total behavior counts were % lower during bed baths than conventional ones (p < . ). sloane et al. ( ) scrutinized what processes underlie this improvement by means of a repeated measures study in which the staff of nursing homes were trained in “person-centred” bathing. this entailed meeting residents’ preferences, minimizing discomfort, and speaking calmly. bed baths as described already were then compared in a cross-over design with conventional showers over a -week period. another five homes acted as “usual-care” controls. baths were videotaped for each of the agitated, aggressive residents and their behaviors were counted by trained observers blind to the study’s aims. rates of agitation and aggression fell significantly in both person-centered conditions (showering %, bed bath %), versus % in usual care (p < . ), but neither condition was better than the other. in other respects, bed baths caused less discomfort, took no more time and removed as many skin debris and pathogenic bacteria as showers. carer education disruptive behaviors arise in a social context. if people with dementia react negatively to well- intentioned help, caregivers’ responses can either soothe or inflame their distress. it makes sense, therefore, to show carers how dementia changes behavior and how to shape constructive responses. in the first of two studies with family carers, gormley et al. ( ) randomized community aged psychiatry patients with at least mild aggressive symptoms to either four home-based behavior management training sessions or general discussions of carer-related issues. the training sessions addressed behavior symptoms, precipit- ating and perpetuating factors, and personalized interventions. management plans were monitored and refined as required over an eight-week period when a blinded researcher repeated the rating scale for aggressive behavior in the elderly (rage) in discussion with carers. scores on rage fell by % from baseline in the experimental group versus % for controls (p = . ). this trend to improvement escaped statistical significance. in an rct with people with alzheimer’s disease and at least weekly agitation, teri et al. ( ) compared the effects of comprehensive behavior training sessions for family caregivers with an antipsychotic medication (haloperidol, mean final dose . mg daily), a sedating antidepressant (trazodone, mean final dose mg daily) and a placebo tablet. when checked weeks later, the attrition rate was high ( %) due to adverse effects in the haloperidol arm and to increased agitation in both the behavior management and trazodone arms. for remaining participants, positive outcomes on the clinical global impression of change (cgic) rating scale were almost identical (behavior management %, haloperidol %, trazodone %, placebo %). two studies, both nested rcts, examined the effect of providing additional training to nursing home staff. burgio et al. ( ) trained care assistants in communication and behavior manage- ment skills over a four-week period using a variety of techniques. all of the residents had behavioral disturbances, at least to a mild degree. staff in half the units then received intensive, continuing super- vision with clinical monitoring, verbal and written feedback, and performance incentives to ensure that skills were maintained. the rest were monitored as usual by senior nurses. at six-month follow- up, the intensive supervision group showed superior skill retention. agitated behaviors declined in both groups with no significant difference between them. more encouraging findings emerged when wells et al. ( ) trained staff members in dementia care, functional assessment, and the use of inter- ventions designed to maintain abilities, and com- pensate for lost ones, during morning bathing, grooming and dressing. teaching was reinforced in fortnightly then monthly updates. the care assistants in other units served as controls in this six-month study of “cognitive support” unit res- idents. on final review, residents in the experimental group showed better function and their caregivers were more resident-focused and relaxed in their approach. scores on the pittsburgh agitation scale fell by % compared with an increase of % for controls (p = . ). music and sound music has proved a popular subject of research, accounting for a third of the reports selected for review. topics of interest include the effectiveness psychosocial treatments of behavior symptoms in dementia: a review of soothing sounds; the role of music in specific situations (dining and bathing); comparisons of music with reading and massage, and the relative benefits of different types of music and modes of delivery. burgio et al. ( ) measured the responses of severely verbally disruptive nursing home residents to soothing audiotapes of a mountain stream or gentle ocean waves. in their four-week, repeated measures study, tapes were switched on and off at five minute intervals for periods of minutes over a series of eight trials. not all residents completed every trial. the headphones were refused on % of occasions and eight of the residents ( %) refused them at least once. despite this, observed periods free of verbal disruption were significantly lower (p < . ) when tapes were “on” ( %) compared to “off” ( %). stream and wave sounds proved equally effective. three studies concerned the benefits of music in particular settings. ragneskog et al. ( ) played three types of music (soft melodious tunes, s jazz and modern pop songs) for two weeks each while residents of a psychogeriatric nursing home ward ate their dinner. when a blinded researcher monitored behavior immediately afterwards using a scandinavian psychiatric scale (gbs), ratings of restlessness declined by % with soothing music, % with s jazz and % with modern pop songs. these differences were not statistically significant. staff served more food while music was playing and residents ate a little more. in one of two repeated measures studies of bathing, clark et al. ( ) observed resistive nursing home residents being bathed on occasions while tapes of their preferred music played in the background. when compared with control baths, instances fell by % for yelling, % for grabbing and % for hitting. rates of all observed aggressive behaviors were halved (p < . ). in similar vein, thomas et al. ( ) observed the responses of resistant nursing home residents, all of whom had been interested in music premorbidly, to bathing with and without preferred music. counts of physical aggression fell % more during music conditions than controls (p < . ). rates of other behavior types were barely altered. another two reports compared music with other therapies. groene ( ) conducted an rct in which nursing home residents who wandered were assigned to five, -minute sessions of either one-on-one music therapy or readings of material tailored to residents’ interests. motor behavior was monitored by means of videotape, pedometers and electronic counters. residents stayed closer to therapists while music played but were no less mobile. in the second report, remington ( ) assigned agitated nursing home residents to single, brief treatments of calming music (an audiotape of a soft, repetitive baroque classic), gentle hand massage, or a combination of the two. when agitated behaviors were counted during treatments by trained observers, mean agitation counts fell from baseline by % with music tapes, % with massage and % with both. these differences were all statistically significant (p < . ) but no treatment worked better than another. to test the importance in music therapy of personal engagement and interaction, sherratt et al. ( ) contrasted the responses of a mixed community and residential group of people with challenging behaviors to single, one hour, group exposures to (i) an audiotape of commercially recorded music; (ii) the same music pre-recorded by a musician, and (iii) a live performance by the same musician who sought to engage participants in the activity. the music was broadly in line with participants’ preferred styles. while rates of arousal, engagement and well-being were highest when music was played live (p < . ), and rates of mean- ingless behavior and sleep were lowest (p < . ), counts by trained observers of wandering and other target behaviors were similar across all conditions. finally, gerdner ( ) counted the behaviors of agitated nursing home residents during and im- mediately after exposure to either soothing “classical relaxation music” or music that was care- fully matched to their interests. in a -week, repeated measures study in which audiotaped music was played for -minute periods twice weekly at times of peak agitation, rates of agitated behaviors fell from baseline by % during classical music and % during individualized music. specially chosen music proved superior to “off the shelf” music during the intervention and even minutes later (p < . ). sensory enrichment multi-sensory stimulation (mss, formerly known as snoezelen) aims to counter the tedium endemic in residential facilities by means of visual, auditory, olfactory and tactile stimuli that participants help generate themselves in a warm, trusting atmosphere with an attendant carer. a typical mss room provides taped music, aroma, bubble tubes, fiber- optic sprays and moving shapes projected across walls. baker et al. ( ) compared eight, - minute mss sessions with directed activities like card games and quizzes. when moderately or severely demented day care attendees and residents of psychogeriatric wards were randomly assigned to one or other condition, neither treatment d. w. o’connor et al. changed staff ratings of behavior during or after treatment. baillon et al. ( ) contrasted mss with re- miniscence therapy, both of which confer supportive one-to-one contact. in a small repeated measures study set in a day-care center and mental health nursing home, participants were exposed to three, -minute sessions of one and then the other treatment. behaviors were rated on the cmai before, during and after treatments. no differences in levels of agitation emerged, though some participants clearly responded positively to both treatments. cohen-mansfield and werner ( ) took a different approach. speculating that much pacing behavior stemmed from bland, institutional sur- roundings, they assessed the impact of enriched en- vironments on levels of pacing, trespassing and exit- seeking in nursing home residents. two corridors were chosen as the best setting since wanderers spent much of their time there. a “nature scene” was created using posters, plants, forest smells and taped birdsong. a “home and people scene” included family photographs, traditional music and a citrus aroma. residents’ behavior was measured using direct observation, photoelectric counters and activity monitors. the scenarios were inexpensive to construct and led to the residents, all of whom paced or wandered regularly, spending twice more time in the corridors than before (p < . ). time spent seated rose significantly in one hallway but not the other, and both trespassing and exit-seeking behaviors fell, though not to a statistically significant degree. staff and relatives enjoyed the improved environment. simulated family presence visits to nursing homes by family members provide comfort in stressful situations but are quickly forgotten by people with dementia. simulated family presence therapy seeks to fill this void by having relatives make audiotapes of scripted “tele- phone conversations” about cherished memories from earlier life. the scripts tap remote memory, one of residents’ few remaining strengths, and are edited to maximize response. camberg et al. ( ) used a repeated measures design to compare simulated presence audiotapes with recorded readings from a newspaper. staff played the tapes in random order via headphones at least twice daily at times when the selected nurs- ing home residents were either agitated or socially withdrawn. researchers then monitored behaviors over a four-week period for each condition, but not necessarily while tapes were playing. despite setbacks (tapes were played inconsistently by staff and behaviors arose less frequently than expected), some participants responded well. taken overall, though, there were no differences in observed behaviors between the treatment, placebo and usual care conditions. in a study by garland et al. ( ), -minute simulated presence audiotapes were compared with tapes of music tailored to residents’ former interests and a placebo condition of readings from a gardening book. treatments were applied by blinded researchers over three days each in randomly ordered blocks at times when the nursing home residents were most agitated. for physically agitated behaviors, rates fell by % from baseline during simulated presence (p = . ), % during personalized music (p = . ) and % during placebo. for verbally agitated behaviors, rates fell by % from baseline during simulated presence (p = . ), % during music and % during placebo (p = . ). both physical and verbal behavior counts were still lower than baseline minutes later. roughly half the participants showed a fall in behavior counts of % or more during one or other condition. a few became more disturbed. recounting positive memories proved burdensome for many family members. music tapes were easier to prepare and worked almost as well as simulated presence. finally, cohen-mansfield and werner ( ) compared simulated presence videotapes with audiotapes of preferred music and one-to-one inter- action in a repeated measures study of nursing home residents, all of whom exhibited verbally dis- ruptive behaviors (shouting, complaining, repeating words, etc.). each of the -minute treatments was applied daily for two weeks in varying orders, at times when participants were actively vocalizing. family members chose the content and style of the simulated presence tapes themselves. in the one-to-one interaction sessions, a research assistant followed broad guidelines (conversation, gentle ex- ercise, a “sensory kit” and manual activities) shaped by participants’ abilities and interests. only % of participants completed all treatments: others died, became quiet or refused the interventions. in those remaining, all three treatments worked better than none (p < . ). rates of shouting, for example, fell from baseline by % during one-to- one interaction, % during simulated presence and % during preferred music. four of seven specific behaviors responded best to social interaction; two responded best to simulated presence, and one to music. behaviors reverted quickly to baseline levels once treatments stopped. it was noted that carefully constructed one-to-one social interaction had a restorative effect on two mute participants psychosocial treatments of behavior symptoms in dementia: a review who started to speak again after a couple of sessions. other treatments the remaining studies concerned recreation, relax- ation training and validation therapy. kolanowski et al. ( ) anticipated that personalized recrea- tional activities can improve both quality of life and behavior. to test this hypothesis, they measured affect and behavior while behaviorally symp- tomatic nursing home residents participated in repeated -minute recreational activities suited to: (i) their former interests; (ii) their current skill levels, and (iii) a combination of interests and skills. blinded observers watched videotapes of sessions and rated the intensity and duration of participants’ behaviors. all treatment conditions worked better than baseline in reducing agitation (p < . ) but none proved superior to another. validation therapy seeks to engage dementia sufferers in a warm, empathic interaction. toseland et al. ( ) randomly assigned nursing home residents to either four -minute validation group sessions each week for a year, or to “social contact” groups, or usual care. a quarter of parti- cipants failed to complete this lengthy trial. validation sessions were relatively structured with a greeting, hand holding, singing, reminiscence and refreshments. session leaders aimed to respond to participants’ implicit communications by means of simple, concrete words spoken in clear, low tones. social contact groups, by contrast, followed a manual of standard activities for people with dementia. contrary to expectations, objective meas- ures of agitated behaviors were actually lower at - and -month reviews in the social contact group (p < . ). progressive muscle relaxation training was tested as a treatment of agitation in an rct with community-resident dementia sufferers and their carers (suhr et al., ). muscle relaxation was selected because it relies on procedural (or motor) memory which is better preserved in alzheimer’s disease than verbal memory. to test its effecti- veness, weekly muscle relaxation training sessions were compared with an individualized imaginal relaxation technique that relied more on verbal skills. at two-month follow-up, scores on the behavior rating in alzheimer’s disease scale fell in both groups with no significant difference between them. discussion most previous systematic reviews of psychosocial treatments applied limited, if any, quality standards when selecting articles (cohen-mansfield, ; snowden et al., ; bharani and snowden, ; livingston et al., ; turner, ; landreville et al., ). three reviews adopted a more discriminating approach, though not as rigorous as ours. ayalon et al. ( ), in a review of three rcts and six rm studies, found evidence in favor of fitting hearing aids, caregiver education, behavioral interventions and bright light therapy. spira and edelstein ( ), in a review of articles including clinical case series, also deduced evidence in support of behavioral approaches while verkaik et al. ( ) were not convinced of the value of most psycho- social remedies, with the exception perhaps of activity programs as a treatment of aggression. we chose an even more focused approach to address three questions: are the benefits of psychosocial treatments in reducing the frequency and/or severity of agitated behaviors just the result of the non-specific care and attention implicit in any research project? are these changes in behavior clinically relevant? and how does one treatment compare with another? this entailed selecting papers that met relatively rigorous methodological criteria, while making allowance for the difficulties that bedevil behavioral research (limited funding, small sample sizes, variable clinical presentations and a lack of blinding to treatment conditions). a need for rigor was tempered, therefore, by an appreciation of the obstacles facing investigators. only of relevant published reports met all the selection criteria, mostly through lack of an adequate control for the attention, stimulation and diversion that follow almost invariably from participation in a study. selecting papers in this way reduces the likelihood that positive findings are due just to placebo effects, regression to the mean, experimental bias or statistical error. research standards are rising nonetheless. when opie et al. ( ) applied the same quality scale as the one used here to the “best quality” papers available at that time, half were rated as “weak.” in contrast, most of the studies considered here were relatively robust with clear inclusion criteria; detailed accounts of methods and participants; structured behavioral observations, and proven inter-rater reliability. only three were graded as “weak,” in two cases because follow-up periods were ambitiously long and large numbers of participants dropped out. since empathic, attentive human interaction reduces anxiety and agitation, it is hardly surprising that psychosocial treatments proved no more effective than attention control conditions in of studies (the two others compared one treatment with another). real differences in outcome might d. w. o’connor et al. have been missed on occasions if small numbers of participants resulted in low statistical power. the mean number of participants in the “failed” studies was (range – ), a modest figure in contrast to most drug trials. one solution is for researchers to standardize reporting details (e.g. mean behavior counts per observation session) so that results can be pooled later. this is not possible at present. study designs, eligibility criteria and behavior measures vary too widely to permit numeric meta-analysis. one limitation to our review is that we considered only objective changes in agitated behaviors, or the consequences of behaviors. outcomes not addressed here (e.g. physical activity, nutrition, comfort, social connectedness and quality of life) also have value. ballard et al. ( ), for example, noted improvements in social engagement and constructive activity with the use of aroma while sherratt et al. ( ) reported heightened well- being with live music. people with dementia are more than the sum of their behaviors and clinicians might well persist with an empirically unproven activity if it is enjoyable, healthy and culturally appropriate. carers’ views must also be considered. nursing home staff and relatives enjoyed the pictures, aromas and sounds provided by cohen- mansfield and werner ( ) and family carers benefited along with study participants from the relaxation training provided by suhr et al. ( ). treatments aromatherapy, which barely figured in earlier reviews, looks promising. lavender reduced the frequency of agitation more than water vapor (holmes et al., ) and massage with lemon balm worked better than sunflower oil (ballard et al., ). it is unlikely that these benefits stemmed just from exposure to pleasant smells since dementia blunts olfaction. there is increasing evidence that the volatile constituents in essential oils cross the blood-brain barrier and bind to relevant neuronal receptors, at least in animals (holmes and ballard, ). further trials of this inexpensive, pleasant, non-toxic intervention are clearly warranted. the two bathing studies, taken together, show that efforts to make this essential routine more palatable to people with dementia, and safer for caregivers, are worthwhile. while bed baths proved no more effective than person-centered showering in reducing agitation and aggression, they were clearly more comfortable for residents (sloane et al., ) and ensured greater privacy. staff resistance is likely to be high due to fears of inefficiency and inadequate hygiene and further studies will be required to check that bed baths are genuinely efficient and effective in a wider range of settings. as an aside, bath times provide an excellent paradigm for pharmacological and psychosocial research given their association with peak levels of disturbed behaviors (burgener et al., ). concerns regarding participants’ privacy can be allayed through the use of nurse-researchers whose presence in the bathroom is warranted clinically. we expected to find that boosting carers’ know- ledge, empathy and communication skills would lead to significant falls in agitation and aggression. while there were trends in this direction (wells et al., ; gormley et al., ; sloane et al., ), the outcomes were not striking. in the largest study, teri et al. ( ) compared two medications, an antipsychotic and an antidepressant, with a family behavior management training program. none worked better than a placebo tablet. two other studies followed nursing home residents over a six-month period (wells et al., ; burgio et al., ). staff members’ skills were enhanced, and residents in the latter study were a little calmer and functioned more independently, but levels of agitation were barely altered. a six-month interval is possibly too long. as dementia progresses, disturbed behaviors remit spontaneously and lengthy studies might therefore fail to capture real shifts in behavior over shorter periods. training programs can certainly change family and professional caregivers’ attitudes, knowledge and skills and are valuable for this reason (burgio et al., ; brodaty et al., ). what impact they have on behavior over a shorter time frame remains to be seen. multi-sensory stimulation comes from the field of learning disability, as a means to enrich and stimulate the worlds of profoundly disabled people. neither of the two studies reviewed here proved effective overall for people with dementia, though some participants responded well (baillon et al., ). random lights, sounds and shapes might prove disturbing for some confused, disoriented older people. efforts by cohen-mansfield and werner ( ) to remedy bleak, impoverished nursing home surrounds found favor with staff and visitors but had a limited effect on residents’ wandering and exit-seeking behavior. music proved very effective in five out of eight studies. agitated behaviors responded better to individually tailored music than “classical relaxation music” (gerdner, ) and aggression declined significantly when participants’ preferred music was played during bath times (thomas et al., ; clark et al., ). “off the shelf” music, by contrast, worked no better than hand massage (remington et al., ), book readings (groene, ) or mealtimes without music (ragneskog psychosocial treatments of behavior symptoms in dementia: a review et al., ). tailoring music to individuals’ preferences is clearly important. live, as opposed to pre-recorded, music had the additional benefit of promoting arousal and social engagement (sherratt et al., ). simulated presence tapes, which employ technology to create the illusion of family intimacy, are effective, though garland et al. ( ) found that relatives, many of whom felt very unhappy and guilty, became distressed when asked to recount happy memories from the past. this emotive component is probably not critical as tapes worked just as well when relatives chose their own material (cohen-mansfield and werner, ). personalized music audiotapes reduced agitation levels almost as well as simulated family presence tapes and one-to-one social interaction in a multi-treatment study by cohen-mansfield and werner ( ) and are relatively cheap and easy to prepare. social interaction tailored to participants’ interests and aptitudes worked best of all, however. confused nursing home residents who live with people they fail to recognize, for reasons they cannot comprehend, respond well to personal care and attention. unfortunately, this “treatment” is the one in shortest supply in most aged care facilities in which staff are busy, stressed and poorly remunerated. we reviewed only single studies of recreation, relaxation and validation therapy. personalized recreational activities worked better than usual care but, in contrast to music, attention to participants’ skills and interests produced little extra benefit (kolanowski et al., ). validation therapy proved inferior to social contact groups (toseland et al., ), pointing again to the value of one-to-one, attentive interaction. progressive muscle relaxation proved useful both to patients and carers. conclusions aromatherapy, bed baths, person-centered bathing, preferred music, one-to-one social interaction, simulated family presence and muscle relaxation therapy all reduced behavioral symptoms better than control conditions. evidence is particularly strong for aroma (ballard et al., ), bed baths (dunn et al., ), gentle sounds (burgio et al., ), individualized music (gerdner, ) and muscle relaxation training (suhr et al., ). all five treatments are supported by studies with robust designs (rcts or rxts), that rated as “moderate” or “strong” on the forbes quality scale and had moderate or high statistical precision (p < . ). evidence checklists like those devised by the australian national health and medical research council (nh&mrc, b) attach greatest value to rcts (level ) and downplay the role of “before and after” rm studies (level ). using nh&mrc rules, only the rct of relaxation training (suhr et al., ) was rated as . the other “best” studies achieved ratings of only a (ballard et al., ) and (burgio et al., ; gerdner, ; dunn et al., ). these scores are too low in our opinion for the reasons outlined above (see methods). there is therefore sufficient evidence to support the use of aroma, bed baths, gentle sounds, individualized music and muscle relaxation training as treatments of behavioral symptoms. this is not to say that other treatments are ineffective. it means only that their benefits cannot be attributed confidently to a unique therapeutic modality. most treatments entailed some measure of human contact, either directly or indirectly. positive interaction between the person with dementia on the one hand, and a family member or care attendant on the other, might form the common basis of many of these interventions. this is not a weakness. human contact can be conceptualized as a treatment of agitation, not just an attention control, that is worthy of study in its own right. in an important study by cohen-mansfield and werner ( ), nursing home residents responded even better to carefully crafted, one-to- one social interaction than to two “established” interventions, namely individualized music and simulated family presence. further scrutiny is warranted to establish the necessary components of personal interaction, optimal activities, time frames and cultural nuances. given the shortage of staff in most aged care facilities, and the focus on nursing procedures, one option is to train and support willing family members and volunteers as therapy facilitators. with respect to treatment duration, cohen- mansfield and werner ( ) noted that two of their severely impaired nursing home residents resumed speaking after a couple of sessions of individually tailored one-to-one interaction but the benefits of psychosocial treatments were otherwise short-lived in the few studies that addressed this (gerdner, ; garland et al., ). this is not a problem, though, if the object is to settle or prevent symptoms that arise in specific situations (e.g. aggression during bathing). short-term problems might respond quite adequately to short-term solutions. marked differences in treatment responses were noted by several investigators. while some participants benefited from an intervention, a few became more agitated (e.g. camberg et al., ; baillon et al., ; garland et al., ). if analyses are based solely on measures of central tendency d. w. o’connor et al. and dispersion, as usually happens now, important within-group differences will not be recognized and a treatment that benefits just a proportion of people, who perhaps share certain characteristics, will be rated a failure. one solution is to list the proportions of study participants whose symptoms improve or worsen to a specified degree. for example garland et al. ( ), in their comparison of simulated family presence and preferred music, found that behavior counts fell by % or more in both treatment arms, despite unimpressive results overall. an unspecified proportion of people became more disturbed. these additional details add a useful perspective and should be encouraged. a simple, cheap treatment that unsettles some participants can be stopped quickly when indicated, with no long-term sequelae. treatments tailored to individuals’ backgrounds and preferences, whether in the form of music, activity or conversation, seem especially beneficial (cohen-mansfield and werner, ; thomas et al, ; clark et al., ; gerdner, ; sherratt et al., ; garland et al. ). this point has emerged strongly in other reviews too (opie et al., ; cohen-mansfield, ; livingston et al., ) and it should guide further research in this area. interventions might also be tailored usefully to participants’ symptoms or symptom profiles. cohen-mansfield and werner ( ), for example, found that verbal disruption due to hallucinations responded best to simulated family presence while requests for attention benefited most from one-to- one attention. fine-grained research is required to address these complex issues. from a methodological perspective, advances in this field of research will include: (i) a requirement that study participants demonstrate one or more behavioral symptoms, to a specified degree and for a specified time, (ii) deploying treatments in time frames and settings (e.g. bath times) when symptoms are most evident, (iii) reporting refusal rates and drop-outs, (iv) tailoring treatments where practicable to participants’ backgrounds and interests; (v) reporting multiple outcomes for participants (e.g. behavior, activity, mood) as well as caregivers (e.g. preferences, time savings); and (vi) outlining treatment costs, convenience and post- study take-up rates. most investigators now measure behaviors directly rather than relying on informant reports which have lower inter-rater reliability (cohen-mansfield, ). time-sampling makes it possible to monitor several subjects’ behaviors simultaneously. behaviors can also be videotaped and analyzed later. these methods work less well with low frequency behaviors. it is clear that behavioral symptoms are difficult to treat, irrespective of approach, and that non- specific placebo effects explain a proportion of the benefits seen. this applies just as much to pharmacological treatments as psychosocial ones. in a meta-analysis by schneider ( ), antipsychotics proved only % more effective than placebo tablets which alone were associated with an average percentage improvement of %. while a meta-analysis of risperidone showed it to be effective (de deyn et al., ), a recent large rct of three atypical antipsychotics in “real world” conditions proved disappointing (schneider et al., ). even combinations of carefully tailored nursing, psychosocial and medical interventions resulted in relatively modest, though statistically significant, changes in behavior in a nursing trial by opie et al. ( ) in which counts of restlessness and verbal disruption fell by % and % respectively. much of this improvement was evident before treatments actually started. seen in this context, aroma and music seem attractive interventions given their evidence base, ease of application and low cost. their effects are probably relatively short-lived but this might prove adequate for some behaviors in certain situations. the task for clinicians and researchers is to discern and articulate these subtleties. a research strategy should therefore seek to (i) test further simple, affordable psychosocial interventions in community and residential settings; (ii) check their effectiveness at times when difficult behaviors are most evident; and (iii) define what treatment properties appeal most to family and professional caregivers. none of the strategies considered here qualifies in most countries for government or insurance rebates. time and expense are therefore important considerations. a simple treatment might succeed where an elaborate one fails. nursing home staff must also be persuaded that a treatment is worthwhile. they are more likely to persist with an intuitively attractive intervention that is pleasant for staff and residents and confers demonstrable benefits in high risk situations. the challenge is to identify treatments that meet all these requirements. conflict of interest because the editor of international psychogeriatics is a co-author, this paper was independently reviewed at arm’s-length under the supervision of the deputy-editor. description of authors’ roles daniel o’connor devised the review, selected and condensed material, and wrote the paper with support from david ames. betina gardner checked psychosocial treatments of behavior symptoms in dementia: a review material and co-rated papers. madeleine king computed effect sizes. acknowledgments this review was funded by the dementia collaborative research centre under the australian commonwealth government’s “dementia: a national health priority” initiative. we thank pro- fessors henry brodaty and jiska cohen-mansfield for helpful comments on an earlier draft of this paper. references altman, d. g., schulz, k. f., moher, d., egger, m. and davidoff, f. 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( ). the effects of psychosocial methods on depressed, aggressive and apathetic behaviors of people with dementia: a systematic review. international journal of geriatric psychiatry, , – . wells, d. l., dawson, p., sidani, s., craig, d. and pringle, d. ( ). effects of an abilities-focused program of morning care on residents who have dementia and on caregivers. journal of the american geriatrics society, , – . radiolabeled gold nanoparticles for imaging and therapy of cancer materials review radiolabeled gold nanoparticles for imaging and therapy of cancer francisco silva , maria paula cabral campello , and antónio paulo , ,* ���������� ������� citation: silva, f.; cabral campello, m.p.; paulo, a. radiolabeled gold nanoparticles for imaging and ther- apy of cancer. materials , , . https://dx.doi.org/ . /ma received: december accepted: december published: december publisher’s note: mdpi stays neu- tral with regard to jurisdictional claims in published maps and institutional affiliations. copyright: © by the authors. li- censee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (https://creativecommons.org/ licenses/by/ . /). ctn—centro de ciências e tecnologias nucleares, instituto superior técnico, universidade de lisboa, estrada nacional (km , ), - bobadela, portugal; fsilva@ctn.tecnico.ulisboa.pt (f.s.); pcampelo@ctn.tecnico.ulisboa.pt (m.p.c.c.) decn—departamento de engenharia e ciências nucleares, instituto superior técnico, universidade de lisboa, estrada nacional (km , ), - bobadela, portugal * correspondence: apaulo@ctn.tecnico.ulisboa.pt abstract: in the last decades, nanotechnology has provided novel and alternative methodologies and tools in the field of medical oncology, in order to tackle the issues regarding the control and treatment of cancer in modern society. in particular, the use of gold nanoparticles (aunps) in radiopharmaceutical development has provided various nanometric platforms for the delivery of medically relevant radioisotopes for spect/pet diagnosis and/or radionuclide therapy. in this review, we intend to provide insight on the methodologies used to obtain and characterize radio- labeled aunps while reporting relevant examples of aunps developed during the last decade for applications in nuclear imaging and/or radionuclide therapy, and highlighting the most significant preclinical studies and results. keywords: gold nanoparticles (aunps); nuclear imaging; radionuclide therapy; nanomedicine; nanotechnology . introduction . . general considerations during the last decades, progresses in cancer research has been remarkable and cancer survival has steadily improved along the years. despite this progress, there is still the need of earlier and more precise diagnostics and better therapeutic outcomes, since cancer remains one of the leading causes of death worldwide. in fact, over . million people will be diagnosed with cancer in europe during , with over . million expected deaths, according to the european cancer information system (ecis). in europe, the most common types of cancer for men and women are prostate and breast cancers, respectively. however, considering both sexes, lung cancer shows the highest mortality rates and accounts for the highest number of cancer deaths in europe (> % of the total number of cancer deaths) [ ]. the occurrence of different types of tumours and the multifactorial etiology of cancer makes cancer an extremely complex and heterogeneous disease, where every patient de- velops almost a unique expression of biomarkers. for this reason, the development of the so-called precision and personalized medicine is essential to achieve better diagnostic and therapeutic outcomes. the combination of nuclear medicine modalities with nanotechnol- ogy offers unique opportunities to achieve this goal by allowing the easy and convenient merge of a variety of diagnostic and therapeutic capabilities into a single agent, within a theranostic approach of cancer. this requires the design of radiolabeled nanoconstructs that can be tailored ideally to the needs of every patient by selecting the appropriate nanoparticle, targeting biomolecule and imaging or therapeutic radionuclide [ – ]. nanoparticles can be obtained with a wide variety of different materials including inorganic compounds or organic polymers, among others. the use of various materials endows the nanoparticles with a variety of morphological and physico-chemical properties, materials , , . https://dx.doi.org/ . /ma https://www.mdpi.com/journal/materials https://www.mdpi.com/journal/materials https://www.mdpi.com https://orcid.org/ - - - https://www.mdpi.com/ - / / / ?type=check_update&version= https://dx.doi.org/ . /ma https://dx.doi.org/ . /ma https://dx.doi.org/ . /ma https://creativecommons.org/ https://creativecommons.org/licenses/by/ . / https://creativecommons.org/licenses/by/ . / https://dx.doi.org/ . /ma https://www.mdpi.com/journal/materials materials , , of which in many cases are relevant for biomedical applications [ ]. among the different classes of nanoparticles (nps), gold nanoparticles (aunps) have gained high prominence in the biomedicine field. the success of aunps is due to their own physico-chemical properties that are suitable for different imaging or therapeutic uses, versatile structural modification, including easy functionalization of their surface with different chemical entities (e.g., chelators, targeting biomolecules or cytotoxic drugs), favourable biological half-life, low toxicity and biocompatibility [ ]. the favourable features of aunps prompted the study of their radiolabelling with a plethora of imaging and therapeutic radionuclides. a significant part of these studies intended to contribute for the design of (nano)radiopharmaceuticals for imaging and ther- apy of cancer. however, many of them just used the radiolabel for a more straightforward assessment of the biodistribution and pharmacokinetics of the aunps or for image-guided delivery of cytotoxic anticancer drugs. this comprised also image-guided biodistribution and pharmacokinetisc studies of boron cage-containing aunps for boron neutron capture therapy (bnct). having this in consideration, this manuscript provides a comprehensive review on the more recent achievements reported for radiolabelled aunps as nanotools for imaging and therapy of cancer. in this introductory section, the more relevant charac- teristics of aunps for their use in biomedical applications are discussed and the properties of medical radionuclides and the capabilities of the different nuclear medicine modalities are presented. . . gold nanoparticles for biomedical applications nanotechnology is a discipline of science and engineering that has led to innovative approaches in many areas of medicine based on the use of biocompatible nanoparticles. its applications in the screening, diagnosis, and treatment of disease are collectively referred to as “nanomedicine”, an emerging field that has demonstrated great potential to revolu- tionize individual and population wide health in the future. it can be seen as a refinement of molecular medicine, integrating innovations in genomics and proteomics on the path to a more personalized medicine [ , ]. for biomedical applications, nanoparticles can be obtained with a wide variety of materials including inorganic compounds or organic polymers, among others. the use of different materials provides nanoparticles of different sizes and shapes with varied physico-chemical properties well-fitted for a specific use in biomedicine [ ]. in this respect, it is important to have in mind the influence of surface and quantum effects that affect the chemical reactivity of nanosized materials, as well as their mechanical, optical, electric and magnetic properties [ , ]. the biological fate and potential toxicity of nanoparticles are also crucial issues, which might restrict their use for medical applications. in fact, for some of them (e.g., quantum dots), their inherent toxicity is a potential drawback but for many others (e.g., iron oxide and aunps) toxicity issues are less relevant. nanoparticle biodistribution can vary greatly depending on the type and size of the particle, as well as on their surface chemistry [ , ]. for imaging and/or therapy of cancer, the selective delivery of drugs or radionuclides into the tumour tissues is of paramount importance. for this purpose, nanoparticles offer unique advantages. in fact, many nps undergo the enhanced permeability and retention (epr) effect that is involved in the passive targeting of leaky tumour tissues. the epr effect is a result of the leakiness of the newly forming blood vessels and poor lymphatic drainage in growing tumours. during the angiogenesis process, the endothelial cells from the blood vessel walls do not seal tightly against each other, leaving fenestrations of approximately – nm in diameter. these processes lead to a passive accumulation of nanoparticles in tumour tissues, as shown in figure [ ]. on the other side, the versatile functionalization of the nps surface with targeting biomolecules (e.g., a peptide or an antibody) allows the specific targeting of tumours through interaction with receptors overexpressed in the tumour cells or in the tumour microenvironment (figure ) [ – ]. materials , , of materials , , x for peer review of biomolecules (e.g., a peptide or an antibody) allows the specific targeting of tumours through interaction with receptors overexpressed in the tumour cells or in the tumour microenvironment (figure ) [ – ]. figure . illustration of the accumulation of nanoparticles in tumour tissues: passive vs active targeting. adapted from mahmoudi et al. ( ) [ ]. for biomedical applications, namely for cancer imaging and therapy, aunps offer the possibility of a versatile functionalization with targeting biomolecules for specific accumulation in tumour tissues, allowing more precise diagnostics and/or localized therapeutic effects. moreover, there are currently available different methods to manipulate the size and shape of gold nanoparticles, spanning from shapes like nanospheres (or nanoshells), nanorods, nanocages to nanostars (figure ), to obtain aunps tailored to the different biomedical uses [ , ]. figure . different types of aunps, according to their shape and morphology. adapted from l. f. de freitas et al. ( ) [ ]. figure . illustration of the accumulation of nanoparticles in tumour tissues: passive vs active targeting. adapted from mahmoudi et al. ( ) [ ]. for biomedical applications, namely for cancer imaging and therapy, aunps offer the possibility of a versatile functionalization with targeting biomolecules for specific accumu- lation in tumour tissues, allowing more precise diagnostics and/or localized therapeutic effects. moreover, there are currently available different methods to manipulate the size and shape of gold nanoparticles, spanning from shapes like nanospheres (or nanoshells), nanorods, nanocages to nanostars (figure ), to obtain aunps tailored to the different biomedical uses [ , ]. materials , , x for peer review of biomolecules (e.g., a peptide or an antibody) allows the specific targeting of tumours through interaction with receptors overexpressed in the tumour cells or in the tumour microenvironment (figure ) [ – ]. figure . illustration of the accumulation of nanoparticles in tumour tissues: passive vs active targeting. adapted from mahmoudi et al. ( ) [ ]. for biomedical applications, namely for cancer imaging and therapy, aunps offer the possibility of a versatile functionalization with targeting biomolecules for specific accumulation in tumour tissues, allowing more precise diagnostics and/or localized therapeutic effects. moreover, there are currently available different methods to manipulate the size and shape of gold nanoparticles, spanning from shapes like nanospheres (or nanoshells), nanorods, nanocages to nanostars (figure ), to obtain aunps tailored to the different biomedical uses [ , ]. figure . different types of aunps, according to their shape and morphology. adapted from l. f. de freitas et al. ( ) [ ]. figure . different types of aunps, according to their shape and morphology. adapted from l. f. de freitas et al. ( ) [ ]. materials , , of . . nuclear medicine modalities and medical radionuclides nuclear medicine procedures involves the administration of radiolabeled drugs that are called radiopharmaceuticals, which are used for diagnostic or therapeutic applications depending on the physical properties of the labeling radionuclide. the two fundamental nuclear medicine imaging techniques are single-photon emis- sion computed tomography (spect) and the positron emission tomography (pet) (figure ). currently, spect and pet scans are essential for the diagnosis and follow-up of patients and can provide unique biological information, at molecular level, on healthy and patholog- ical processes. by contrast, other imaging modalities, such as magnetic resonance imaging (mri) or computed tomography (ct), only provide anatomical images or functional data. nowadays, multimodal devices such as pet-ct, spect-ct or pet-mri can combine in a synergic manner these techniques providing images with both quantitative functional infor- mation and high-resolution anatomic reference [ ]. the high sensitivity of nuclear imaging techniques allows the detection of the photons emitted by the radiopharmaceuticals admin- istered systemically, usually in an intravenous manner, to evaluate organ functionality and disease progression. contrarily to the contrast agents used in other imaging techniques such as mri or ct, the sub-nanomolar range dosage of radiopharmaceuticals does not in- duce any biochemical alteration in the system that is being imaged. biochemical alterations always occur before anatomical changes. therefore, pet and spect are more adequate for molecular imaging applications and earlier diagnostic of disease, when compared with classical ct, mri or ultrasound (us) imaging. nonetheless, it is important to notice that recent progresses in the development of more sensitive target-specific contrast agents for mri or us imaging might render these techniques with higher translational potential for diagnostic molecular imaging [ ]. however, nuclear imaging techniques offer the unique advantage to easily switching from a diagnostic radionuclide to a therapeutic one, using the same chemical entity, giving rise to an increasing number of clinical applications with theranostic radiopharmaceuticals, as detailed below. materials , , x for peer review of . . nuclear medicine modalities and medical radionuclides nuclear medicine procedures involves the administration of radiolabeled drugs that are called radiopharmaceuticals, which are used for diagnostic or therapeutic applications depending on the physical properties of the labeling radionuclide. the two fundamental nuclear medicine imaging techniques are single-photon emission computed tomography (spect) and the positron emission tomography (pet) (figure ). currently, spect and pet scans are essential for the diagnosis and follow-up of patients and can provide unique biological information, at molecular level, on healthy and pathological processes. by contrast, other imaging modalities, such as magnetic resonance imaging (mri) or computed tomography (ct), only provide anatomical images or functional data. nowadays, multimodal devices such as pet-ct, spect-ct or pet- mri can combine in a synergic manner these techniques providing images with both quantitative functional information and high-resolution anatomic reference [ ]. the high sensitivity of nuclear imaging techniques allows the detection of the photons emitted by the radiopharmaceuticals administered systemically, usually in an intravenous manner, to evaluate organ functionality and disease progression. contrarily to the contrast agents used in other imaging techniques such as mri or ct, the sub-nanomolar range dosage of radiopharmaceuticals does not induce any biochemical alteration in the system that is being imaged. biochemical alterations always occur before anatomical changes. therefore, pet and spect are more adequate for molecular imaging applications and earlier diagnostic of disease, when compared with classical ct, mri or ultrasound (us) imaging. nonetheless, it is important to notice that recent progresses in the development of more sensitive target-specific contrast agents for mri or us imaging might render these techniques with higher translational potential for diagnostic molecular imaging [ ]. however, nuclear imaging techniques offer the unique advantage to easily switching from a diagnostic radionuclide to a therapeutic one, using the same chemical entity, giving rise to an increasing number of clinical applications with theranostic radiopharmaceuticals, as detailed below. radionuclides useful for imaging emit either γ-photons or positrons and their optimal half-life is generally going from some minutes to few hours, as can be seen in table . spect imaging involves the detection of γ-photons in a gamma camera placed outside the patient, which are emitted directly by the radionuclide with an energy typically in the range – kev. pet imaging is based on the detection of back-to-back kev annihilation photons that result from the interaction of the positrons emitted by the radionuclide with electrons from the surrounding medium (figure ) [ , ]. figure . schematic diagrams of spect (left) and pet (right) imaging. figure . schematic diagrams of spect (left) and pet (right) imaging. radionuclides useful for imaging emit either γ-photons or positrons and their optimal half-life is generally going from some minutes to few hours, as can be seen in table . spect imaging involves the detection of γ-photons in a gamma camera placed outside the patient, which are emitted directly by the radionuclide with an energy typically in the range – kev. pet imaging is based on the detection of back-to-back kev annihilation photons that result from the interaction of the positrons emitted by the radionuclide with electrons from the surrounding medium (figure ) [ , ]. materials , , of table . examples of relevant radionuclides for imaging use. radionuclide half-life mode of decay (%) application c . min β+ ( ) pet f . min β+ ( ) ec a ( ) pet cu . h β+ ( ) pet cu . min β+ ( ) pet cu . h β− ( ) β+ ( ) ec ( ) pet/therapy ga . d ec ( ) spect ga . min β+ ( ) ec ( ) pet y . h β+ ( ) ec ( ) pet zr . h β+ ( ) pet mtc . h it b ( ) spect in . d ec ( ) spect i . h ec ( ) spect i . h β+ ( ) pet a ec = electron capture; b it = isomeric transition. the radionuclides used in therapy are generally α or β− emitters. however, the cytotoxicity mediated by low-range auger electrons, emitted by radionuclides undergoing electron capture (ec) and internal conversion (ic) decay processes, have also gained considerable attention when properly delivered to tumour cells [ ]. all these radionuclides emit particulate radiation with different path-lengths and linear energy transfer (let) values in soft tissues, allowing to choose the best suited for the specificity of the disease to target. some of the most relevant radionuclides useful for therapy are presented in table . in current nuclear medicine practice, therapeutic approaches using radionuclides are still limited to the treatment of radiosensitive tumours, being generally preferred other strategies such as surgery, external radiotherapy or conventional chemotherapy for the treatment of solid malignancies. however, the possibility of integrating imaging and therapy make radiopharmaceuticals powerful tools for the development of more person- alized approaches, especially in cancer theranostics. the term theranostics accounts for the almost unique opportunity that radiopharmaceuticals offer to develop more specific, individualized therapies and to combine diagnostic and therapeutic capabilities into a single agent. the same targeting biomolecule recognizing a particular molecular target, can be labelled either with a diagnostic or with a therapeutic radionuclide allowing the development of a patient-specific treatment [ ]. for example, significant progresses have been reported recently for somatostatin analogs labelled with ga for pet imaging or with lu for peptide receptor radionuclide therapy (prrt). these progresses led to the ap- proval of the radiopharmaceuticals ga-dotatate (netspot®) and lu-dotatate (lutathera®) for clinical use in the diagnosis and treatment of neuroendocrine tumours (nets) mediated by somatostatin receptor, both in europe and in the usa [ ]. materials , , of table . examples of relevant radionuclides for therapeutic use. radionuclide half-life (h) mode of decay (%) cu . β− ( ) y . β− ( ) i . β− ( ) sm . β− ( ) ho . β− ( ) lu . β− ( ) re . β− ( ) ec a ( ) re . β− ( ) au . β− ( ) au . β− ( ) at . α ( ) ra . α ( ) ac . α ( ) a ec = electron capture. as reviewed herein, aunps were evaluated in several instances as delivery systems for some of the medical radionuclides that are presented in tables and . part of the reported research work aimed at the design of innovative (nano)radiopharmaceuticals for imaging and therapy of cancer [ ]. however, many of these studies dealt with aunps labeled with imaging radionuclides just to achieve a more straightforward evaluation of their in vivo biological fate and pharmacokinetics, profiting from the non-invasiveness and high sensitivity inherent to nuclear imaging modalities. for this purpose, it is of great importance that the incorporation of the radioisotope remains stable under in vivo conditions in order to exert properly its function. otherwise, radioisotope biodistribution will no longer reflect that of the nanoparticles, meaning that the imaging data will not be useful to assess the fate of the nanoparticles. . synthesis of gold nanoparticles one of the most common methods of aunp synthesis is by reduction of a gold precursor, generally the tetrachloroauric acid (haucl ), in the presence of a stabilizing agent (figure a). in order to guarantee the reduction of the gold, strong to mild reducing agents are used, like nabh , hydrazine or citrate. in , turkevitch et al. developed one of the most conventional synthetic routes, still in use to this day, which consists on the reduction of au(iii) in haucl by citrate in water. it is known as the citrate reduction method, which allows the formation of citrate stabilized aunps and a controlled size of the particles by varying the citrate/gold ratio [ ]. a few years later, in , brust et al. introduced a new procedure for the efficient synthesis of stable aunps with reduced dispersity and controlled size, which represented at the time an important breakthrough. this procedure is based on the use of thiolated ligands that strongly bind to gold due to the soft character of both au and s. after addition of a reducing agent (nabh ), the au(iii) is reduced to au(i) and the aunps are formed [ ]. this opened the opportunity to develop aunps using a great variety of thiolated ligands. this method allows the control of core nanoparticle size by shifting the ratio of thiol/au in the reaction mixture; for instance, the use of larger thiol/au ratios affords smaller core sizes with less polydispersity [ , ]. materials , , of materials , , x for peer review of figure . schematic synthesis of (a) aunps by the ( ) turkevitch and ( ) brust methodologies, (b) aunrs by the seed-mediated method, and (c) ( ) core and ( ) hollow aunss. for the synthesis of hollow aunss, one approach is to use the silica core to synthesize the gold nanoshells as described above and then use hf to remove the sio core. another method is the template galvanic replacement of silver. this methodology is based on the higher standard reduction potential of the aucl −/au pair when compared with that of the ag+/ag pair. silver is oxidized into ag+ when silver nanostructures and haucl are mixed in an aqueous medium. by optimizing the ratio between the silver nanoparticles and haucl , silver atoms can diffuse into the gold shell (or sheath) to form a seamless, hollow nanostructure with its wall made of au-ag alloys [ , ]. the further increasing figure . schematic synthesis of (a) aunps by the ( ) turkevitch and ( ) brust methodologies, (b) aunrs by the seed-mediated method, and (c) ( ) core and ( ) hollow aunss. in recent years there has been an increased interest on green methodologies for the synthesis of aunps, using alternative reducing agents to nabh or hydrazine that are environmentally toxic. in this regard, katti et al. have developed extensive work with phy- tochemical agents extracted from various biological media (e.g soybeans, tea leaves) [ – ]. it was demonstrated that these phytochemical agents performed the dual function of re- ducing the gold salt to form the aunps and at the same time provide a protein coating that can stabilize the nanoparticle structure [ , ]. materials , , of as mentioned above, aunps can be obtained in various forms, including nanospheres, nanorods, nanoshells or nanocages. the synthetic methods described above are commonly used to obtain aunps in spherical amorphous form. the synthesis of aunps with a more complex shape requires alternative methodologies [ , , ]. gold nanorods (aunrs) are commonly synthesized through the seed-mediated approach, which involves a two-step process where initially a seed solution is prepared with tetrachloroauric acid in the presence of a strong reducing agent (e.g., nabh ) (figure b). the seed solution is then added to a mixture of cetyltrimethylammonium bromide (ctab), a mild reducing agent (e.g., ascorbic acid) and tetrachloroauric acid. the elongated ellipsoidal shape of the ctab micelles permits the growth of the aunps of the seed solution in an elongated manner, in order to obtain a rod shape [ – ]. some variations on this procedure include the addition of agno prior to the growth phase, which allows a better control of the shape and increase the yield of aunrs [ ]. besides the seed-mediated method, other methodologies have also been reported in literature for the synthesis of aunrs. the template method is based on the electrochemical deposition of au within nanoporous template membranes, which can be of different materials (e.g., polycarbonate or alumina). ag or cu is added to the template membrane to form a conductive film that allows for the electrodeposition of au and growth of the nanoparticles within the membrane nanopores. the nanorods are then recovered by selective dissolution of the template membrane and ag or cu film. the diameter of the aunrs is dependent of the nanopore diameter of the membrane, while the length can be controlled by the amount of au deposited [ , ]. electrochemical methods for aunr synthesis are usually based on the use of a dual electrode electrochemical cell. a gold layer is used as the anode and a platinum layer as cathode. both electrodes are immersed in a surfactant solution composed of the cationic surfactant ctab and a more hydrophobic cationic surfactant like tetradodecylammonium bromide (tcab), which are responsible for the formation of the rod-shaped nanoparticles. during the process of controlled current electrolysis, the gold layer releases au ions that migrate to the cathode where reduction occurs and the aunrs are formed [ ]. gold nanoshells (aunss) can be of two types, namely solid or with a hollow core (figure c). the synthesis of core-containing aunss is based on the use of a seed nanopar- ticle, which will form the core of the nanoshell. then, the addition of tetrachloroauric acid in the presence of a reducing agent leads to the deposition of gold seeds on the surface of the core. sio is one of the most commonly used cores. these silica nanoparticles have a capping agent on their surface, like -aminopropyltriethoxysilane (aptes), which provides nh groups that can link to the gold [ ]. for the synthesis of hollow aunss, one approach is to use the silica core to synthesize the gold nanoshells as described above and then use hf to remove the sio core. another method is the template galvanic replacement of silver. this methodology is based on the higher standard reduction potential of the aucl −/au pair when compared with that of the ag+/ag pair. silver is oxidized into ag+ when silver nanostructures and haucl are mixed in an aqueous medium. by optimizing the ratio between the silver nanoparticles and haucl , silver atoms can diffuse into the gold shell (or sheath) to form a seamless, hollow nanostructure with its wall made of au-ag alloys [ , ]. the further increasing of the haucl present in the medium triggers a dealloying process that selectively removes silver atoms from the alloyed wall. this induces morphological reconstruction that leads to the formation of pinholes in the walls, and the nanoparticles acquire a cage like structure. this is one of the common methodologies for the synthesis of gold nanocages (auncs). temperature also plays an important role in the replacement reaction because the solubility constant of agcl and the diffusion coefficients of ag and au atoms are both strongly dependent on this parameter [ ]. due to the inherent difficulties in analyzing nanoscale materials, in comparison with molecular or bulk materials, the characterization of nps requires particular analytical techniques and methodologies. it is common to recur to various characterization techniques, materials , , of in a complementary manner, to obtain reliable information on the nps structure and their physico-chemical properties. besides the techniques summarized below, there are various other methodologies available nowadays for np characterization. the use of a single one of these characterization techniques cannot provide all the required data for a proper assessment of the np structure, hence it is necessary to take into consideration the technique’s strengths and weaknesses, depending on the nature of the np [ , ]. microscopy techniques, like transmission electron microscopy (tem) or scanning electron microscopy (sem), can provide information regarding the size and shape of the nanoparticles. on the other hand, the study of the hydrodynamic size distribution relies on techniques like dynamic light scattering (dls) or nanoparticle tracking analyses (nta), which can also provide information on the agglomeration state of the nps in solution. other commonly used techniques are zeta-potential measurements for surface charge determination and uv-vis spectroscopy for characterization of optical properties, namely to determine the surface plasmon resonance wavelength that can be correlated with the size and shape of the nanoparticles. in the particular case of metallic nps, x-ray-based techniques, like x-ray diffraction (xrd), are used to assess the crystalline structure and elemental composition [ , ]. . radiolabelling of gold nanoparticles to pursue with a stable radiolabeling of aunps it is commonly required to perform their functionalization with suitable molecular entities, which will allow for the coordi- nation/conjugation of the radioisotopes [ ]. in this regard, there are different synthetic pathways available to functionalize aunps: (i) using bifunctional molecules that can act as a capping/stabilizing agent during the synthesis of the aunps and that can bind to the radioisotopes [ , ]; (ii) direct conjugation of amino/thiolated molecules to the surface of preformed aunps [ , ]; (iii) ligand exchange, in which some/all of the cap- ping/stabilizing molecules on the aunps are exchanged with a different molecule with gold bonding capabilities [ ]; and (iv) chemical modification of molecules already present in the aunp structure [ , ]. another way to incorporate radionuclides into the aunp structure, without their further chemical functionalization, is by directly introducing the radioisotopes in the nanoparticle core (figure ). this is commonly achieved by using a / au precursor in the synthesis of the nanoparticles [ , ]. alternatively, it has also been reported the neu- tron irradiation of non-radioactive aunps to originate / au-containing nanoparticles through neutron capture reactions ( au(n,γ) au and au(n,γ) au) [ ]. materials , , x for peer review of figure . schematic drawing of different pathways to incorporate radionuclides into aunps. in some cases, it is possible to attach other radionuclides to the aunps without the need of extra chemical derivatization. this can be achieved by adsorption of the radionuclide to the aunp surface, namely for i or cu [ , ]. the incorporation of the radionuclide in the nps core is another possibility, as reported by liu et al. for cu alloyed aunps modified with peg. these cu-labeled aunps were obtained starting from haucl and cu(acac) and using oleylamine as reducing agent [ ]. in the same way, chen et al. have studied the integration of a cu shell into peg-stabilized aunps by reducing cu(ii) in the presence of hydrazine and polyacrylic acid [ ]. . examples of radiolabeled aunps for nuclear imaging applications as summarized in table , many imaging radionuclides were used in the labeling of a variety of aunps to evaluate their biological fate in selected cellular and animal models, which included ex-vivo biodistribution studies or nuclear imaging scans (pet or spect). part of this work also involved studies of image-guided drug delivery by aunps. in the next sub-sections, the most recent and relevant results are reviewed by the types of radionuclides used, i.e., radiohalogens vs. radiometals. table . examples of aunps labeled with imaging radionuclides and respective preclinical studies. radioisotope type of aunps/size/coating (radiolabeling approach) imaging application/study references f spherical aunps/ nm/lpffd ( f-fluorobenzoate conjugation) biodistribution studies and in vivo pet imaging in healthy mice. [ – ] cu aunss/ nm/cyclic-rgd (chelator-based) pet imaging and thermoablation treatment in hct human colorectal cancer xenograft mice. [ ] spherical aunps/ . nm/peg ( cu/au alloying) biodistribution and in vivo pet imaging in rats bearing emt- breast cancer. [ ] aunss/ . nm/doxorubicin, lipiodol (chelator-based) biodistribution and chemotherapeutic drug delivery studies, laser induced thermal treatment and in vivo pet imaging in hepatic vx tumours in mice. [ , ] auncs/ nm/peg, α-msh (chelator-based) biodistribution studies and pet/ct imaging in vivo in b /f melanoma mouse model. [ ] figure . schematic drawing of different pathways to incorporate radionuclides into aunps. materials , , of in some cases, it is possible to attach other radionuclides to the aunps without the need of extra chemical derivatization. this can be achieved by adsorption of the radionuclide to the aunp surface, namely for i or cu [ , ]. the incorporation of the radionuclide in the nps core is another possibility, as reported by liu et al. for cu alloyed aunps modified with peg. these cu-labeled aunps were obtained starting from haucl and cu(acac) and using oleylamine as reducing agent [ ]. in the same way, chen et al. have studied the integration of a cu shell into peg-stabilized aunps by reducing cu(ii) in the presence of hydrazine and polyacrylic acid [ ]. . examples of radiolabeled aunps for nuclear imaging applications as summarized in table , many imaging radionuclides were used in the labeling of a variety of aunps to evaluate their biological fate in selected cellular and animal models, which included ex-vivo biodistribution studies or nuclear imaging scans (pet or spect). part of this work also involved studies of image-guided drug delivery by aunps. in the next sub-sections, the most recent and relevant results are reviewed by the types of radionuclides used, i.e., radiohalogens vs. radiometals. table . examples of aunps labeled with imaging radionuclides and respective preclinical studies. radioisotope type of aunps/size/coating (radiolabeling approach) imaging application/study references f spherical aunps/ nm/lpffd ( f-fluorobenzoate conjugation) biodistribution studies and in vivo pet imaging in healthy mice. [ – ] cu aunss/ nm/cyclic-rgd (chelator-based) pet imaging and thermoablation treatment in hct human colorectal cancer xenograft mice. [ ] spherical aunps/ . nm/peg ( cu/au alloying) biodistribution and in vivo pet imaging in rats bearing emt- breast cancer. [ ] aunss/ . nm/doxorubicin, lipiodol (chelator-based) biodistribution and chemotherapeutic drug delivery studies, laser induced thermal treatment and in vivo pet imaging in hepatic vx tumours in mice. [ , ] auncs/ nm/peg, α-msh (chelator-based) biodistribution studies and pet/ct imaging in vivo in b /f melanoma mouse model. [ ] spherical aunps/ nm/peg, bombesin, lug, nir dye sidag (chelator-based) in vitro radiotoxicity studies in pc and lncap cell lines. biodistribution studies and pet/ct imaging in healthy mice. [ ] nanoclusters/ . nm/amd (chelator-based) biodistribution studies and pet/ct imaging in t mouse orthotopic breast cancer mouse model with lung metastases. [ ] spherical, hexapodal and rod shaped aunps/ , , nm/peg, cyclic rgd ( cu epitaxial growth on np surface) biodistribution studies and in vivo pet imaging in u mg glioblastoma xenograft mice. [ ] tripod shaped aunps/ , nm/dapta ( cu-doped nps) in vivo pet imaging and image-guided photothermal treatment in t -tnbc xenograft mice. [ ] auncs/ . , . nm/peg (chelator-based) biodistribution and in vivo pet imaging in emt- murine breast cancer mouse model. [ ] aunss/ nm/peg (chelator-based) in vivo pet imaging of cu-ns-rgdfks pharmacodynamics in nude rats xenografted with head and neck squamous cell carcinoma (hnscc) [ ] ga spherical aunps/ nm/bombesin, dota (chelator-based) in vitro radiotoxicity studies in pc cells. biodistribution studies in pc xenograft mice. [ , ] materials , , of table . cont. radioisotope type of aunps/size/coating (radiolabeling approach) imaging application/study references ga spherical aunps/ . nm/noc, toc (chelator-based) in vitro binding kinetics studies in human colon cancer cell line (ht- ) and ar j cell line of acinar pancreatic rat. [ ] spherical aunps/ nm/peg, bombesin, lug, nir dye sidag (chelator-based) ex vivo biodistribution studies and in vivo fluorescence imaging in lncap tumour bearing mice. [ ] mtc dendrimer-entraped spherical aunps/ . nm (au core), . nm (dendrimer)/pamam (chelator-based) biodistribution studies in xenograft mice tumours with hela cells. [ ] dendrimer-entraped spherical aunps/ – nm (au core), – nm (dendrimer)/peg, cyclic rgd (chelator-based) ex vivo biodistribution studies in albino mice. in vivo micro-spect/ct imaging, in albino mice and nude mice bearing c xenografted tumours. therapeutic efficacy studies in c xenografted mice. [ – ] spherical aunps/ nm/cyclic rgd (chelator-based) scintigraphy imaging in xenografted mice harboring t metastasis breast cancer. [ ] spherical aunps/ . nm/resveratrol (chelator-based) in vivo biodistribution studies in ht tumour bearing rats. [ ] pei-entraped spherical aunps/ . nm (au core)/peg, fluorescein isothiocyanate, alkoxyphenyl acylsulfonamide (chelator-based) in vitro ct and spect imaging of fribrosarcoma ht cells. [ ] spherical aunps/ . nm/annexin v (chelator-based) spect/ct imaging of mice with high fat diet-induced atherosclerosis. [ ] spherical aunps/ . nm/doxorubicin, egcg (chelator-based) in vitro cytotoxicity studies in breast carcinoma mcf- and hepatocellular carcinoma hepg- cell lines. biodistribution studies in ehrlich ascites carcinoma tumour bearing albino mice. [ ] spherical aunps/ nm/gallic, doxorubicin (chelator-based) in vitro anti-proliferative activity studies in mcf cell lines. biodistribution studies in ehrlich ascites carcinoma tumour bearing albino mice. [ , ] in spherical aunps/ nm/mmp (chelator-based) in vivo spect/ct imaging in nude mice bearing bilateral tumours (a with high mmp expression and t luc with low mmp expression). [ ] spherical aunps/ nm/egf (chelator-based) internalization and radiotoxicity studies in mda-mb- and mcf- cells. [ ] spherical aunps/ nm/trastuzumab (chelator-based) micro-spect/ct imaging in mda-mb- human breast cancer xenograft mice. [ , ] i spherical aunps/ , , nm/oligotyrosine ( i-embeded nps) dendritic cell and macrophages labeling in vivo for pet imaging detection of sentinel lymph nodes. [ – ] crushed au shell-covered spherical aunps/ . nm/ poly(n-vinyl- -pyrrolidone (chloramine t oxidation combined with i-embeded nps) pet/ct imaging in t and ct tumour bearing mice and photothermal therapy in ct tumour bearing mice. [ , ] materials , , of table . cont. radioisotope type of aunps/size/coating (radiolabeling approach) imaging application/study references i spherical and rod shaped aunps/ nm/cyclic rgd (np adsorption) biodistribution studies and spect/ct imaging in h tumour bearing mice. [ ] spherical aunps/ nm/mmp (chelator-based) in vivo spect/ct imaging in nude mice bearing bilateral tumours (a with high mmp expression and t luc with low mmp expression). [ ] spherical aunps/ , , nm/ ogotyrosine (chloramine t oxidation combined with i-embeded nps) dendritic cell and macrophages labeling in vivo for spect/pet imaging detection of sentinel lymph nodes. [ – ] au spherical aunps/ , nm/dapta ( au-doped nps) biodistribution studies and spect/ct imaging in t tumour bearing mice. [ ] amorphous/ – nm/peg, folic acid, human immunoglobulin, bharglob, m -monoclonal antibody ( au np synthesis) in vivo biodsitribution studies in healthy mice. [ ] spherical aunps/not applicable ( aunps) assessment of dose distribution in human prostate cancer using monte-carlo simulations. [ ] . . radiohalogens . . . fluorine- ( f) fluorine- ( f) is the most widely used positron emitter in clinical pet imag- ing [ , ]. conversely, there are only few examples of gold nanoparticles radiolabeled with f aiming at their assessment as pet probes. kogan and co-authors were the pi- oneers in the biological evaluation of gold nanoparticles radiolabeled with f. in , they attached covalently [ f]-fluorobenzoate to gold nanoparticles. the nanoparticles were functionalized with the cys-leu-pro-phe-phe-asp (clpffd) peptide, which has potential use in the treatment of alzheimer disease by removing the toxic β-amyloid aggregates formed, and with the cys-lys (ck) peptide, which allows conjugation of the n-succinimidyl- -[ f]-fluorobenzoate ([ f]-sfb) through the reaction of the amine of the side chain of the amino acid k with the carbonyl function present in the [ f]-sfb [ ]. biodistribution studies, performed two hours after intravenous administration of the re- sulting f-labeled nanoconjugate in rats, have shown high accumulation of radioactivity in the bladder and urine due to the peptide-associated pharmacokinetics. lungs, liver, intestine, kidneys, blood are also target organs, being observed the lowest uptake of ra- dioconjugate in the pancreas and brain [ ]. aiming to overcome the small uptake of radiolabeled aunps in the brain, schirrmacher et al. assessed the properties of new gold nanoparticles bearing a maleimide group, partially hydrolyzed and non-hydrolyzed, and the prosthetic silicon-fluorine group f-sifa-sh [ ]. brain images obtained by in vivo micro pet scans of normal rats, at h after intravenous injection of the f-labeled aunps, revealed a higher brain uptake of the partially hydrolyzed form ( . % id/g) relatively to the non-hydrolyzed congeners ( . % id/g). as proof-of-concept, the authors function- alized these partially hydrolyzed radio-gold nanoparticles with a cysteine derivative of the octreotate peptide tate, which has a high appetency for the somatostatin receptors present in several endocrine tumours. micropet biodistribution studies showed that the target-specific aunps have a similar brain uptake as the starting radio-nanogold platform partially hydrolyzed [ , ]. materials , , of . . . iodine- ( i) iodine- is a rather-long lived positron emitter (t / = . d) that is very suitable for the radiolabeling of compounds with long circulation times and/or slow excretion rates, as is often the case of aunps [ ]. lee and co-authors developed aunps functionalized with tannic acid (ta-aunps), which were radiolabeled with i and subsequently surrounded by a protective shell of au to obtain the final nps ( i-ta-au@aunp). i-ta-au@aunp was evaluated as a pet probe to label dendritic cells (dcs) and visualize their migration to lymphoid organs [ ]. dcs can recognize several types of tumour-specific or associated antigens and induce anti-tumour immune reactions [ ]. in vivo pet/ct images of mice, subcutaneously injected into the footpad with bone marrow-derived dcs (bmdcs) labeled with i-ta-au@aunps, showed that the cells predominantly migrate to the draining lymph nodes. when the mice were pre-conditioned with tumour necrosis factor alpha (tnf-α), the i-ta-au@aunps-bmdcs could be detected in the popliteal lymph nodes, after h injection and until h post injection [ ]. the same authors have also performed studies with radionuclide-embedded aunps, carrying dna ( i-rie-aunps), peg ( i-peg-rie-aunps) and polypeptides ( i-poly-y-rie-aunps) [ ]. the in vivo pet/ct and cerenkov luminescence imaging (cli) images obtained after injection of rie-aunps into the foot pad of mice showed a highly selective migration of the labeled dcs to draining popliteal lymph nodes (dplns). additionally, the combined in vivo pet/cli images obtained for rats administered with i-peg-rie-aunps demonstrated that the aunps are effectively captured by the sentinel lymph nodes [ ]. the cli in vivo images also showed strong optical signals in lung, liver and spleen, with image quality equivalent to that of pet/ct images. ex-vivo biodistribution studies have confirmed the migration of dcs to dplns, when in general optical imaging cannot detect the migration of dcs to deep tissues [ ]. rie-aunps have also demonstrated capabilities to monitor macrophage migration and, therefore, to follow-up the therapeutic effects of anti-inflammatory agents in vivo by pet imaging [ ]. studies with poly-y-rie-aunps have shown that this platform not only allows selective screening of migration from dcs to lymphoid organs, but also promotes maturation of dcs with production of significant amounts of cytokines, such as tnfα and il- , in the spleen and lymphatic drainage nodes. peg-rie-aunps were evaluated as imaging probes for the detection of sentinel lymph nodes. the combined pet/cli in vivo images performed on rats clearly demonstrated that peg-rie-aunps are effectively captured by the sentinel lymph nodes [ ]. the same authors have also developed crushed gold shell radioactive nanoballs ( i- au@aucbs) and assessed their theranostic potential in photothermal therapy, based on a macrophage-mediated delivery of the nps to the tumour tissues. the authors demon- strated the capability of i-au@aucbs to enhance photodynamic therapy in colon cancer bearing mice, when administered intratumourally [ , ]. the authors have also designed pegylated i-au@aucbs, which have been evaluated for multimodal (pet/cli) in vivo detection of sentinel lymph nodes. the lymph nodes could be detected in mice following subcutaneous injection into the footpad, and its accumulation persisted until h post injection. however, the utility of the platform as a lymphatic tracer is hampered by its unexpected in vivo toxicity [ , ]. . . . iodine- ( i) iodine- emits gamma rays followed by an average of auger electrons per decay with very low energies ( . – . kev). i is used clinically for brachytherapy, namely as i-seeds to treat prostate cancer, and has been thoroughly investigated at preclinical level for auger therapy of cancer [ ]. i is not the best suited radionuclide for imaging applications but it can be used for biodistribution studies and even for spect imaging scans. for this reason, i has been used in several instances to radiolabel aunps and to image their biodistribution in animal models [ ]. for instance, zhang and co-workers have recently reported on cisplatin-loaded and i-labeled gold nanoparticles (rgd- ipt- aunps and rgd- ipt-aunrs) carrying an arginine-glycine-aspartic acid (rgd) peptide materials , , of analog. these rgd-containing gold nps were evaluated for their tumour accumulation and chemo-radiotherapy efficacy in mice xenografts. in vitro studies, performed on the human derived αvβ positive h cells, have shown that both types of nanoparticles exhibit high affinity and specificity for αvβ . however, spect/ct imaging of h tumour xenograft nude mice, intravenously injected with the i-labeled aunps, demonstrated that tumour accumulation of the rod-shaped rgd- ipt-aunrs was significantly higher than that of the spherical rgd- ipt-aunps, at each time point. however, no significant difference was observed for the distribution patterns of these two types of probes in the other major organs, such as the liver and spleen [ ]. . . radiometals . . . copper- copper- ( cu) is one of the most widely used pet radioisotopes for nanoparticle labeling. accordingly, several types of cu-gold nanoparticles have been reported for the development of cancer theranostic tools based on pet imaging. the cu radiolabeling was achieved either through chelator-free or through chelator-based strategies [ ]. using the chelator free approach, xie et al. have studied the cu-radiolabeling of gold nanoshells functionalized with a rgd peptide derivative ( cu-ns-rgdfks). the biodistribution and tumour specificity of the cu-nss were assessed by pet-ct imaging of live nude rats xenografted with head and neck squamous cell carcinoma (hnscc). the images showed that the integrin-targeted cu-ns-rgdfks have a higher concentration in the tumour than the non-targeted cu-ns-peg, although they have similar biodistribution trends. post-mortem biodistribution analyses by measurement of radioactivity ( cu) and naa (gold content), h after intravenous injection, confirmed the improved tumour accumulation of the targeted nss. in addition, the usefulness of the ns-rgdfks as a photothermal therapeutic enhancer agent was confirmed in treatments conducted in nude mice xenografts with subcutaneous hct human colorectal cancer [ ]. liu and co-authors developed spheric aunps radiolabelled with cu, in which the radioisotope was incorporated directly into the structure of the aunp core. these nanoparticles are very stable and constitute a good platform for oncology pet imaging, as shown by in vivo studies in rats bearing emt- breast carcinoma. the studies showed that the tumour can be clearly visualized by these cu-containing aunps with a definition similar to that obtained with f- -deoxyglucose ( f-fdg), at h p.i. [ ]. subsequently, other cu-containing aunps with different shapes and sizes have been synthesized by a similar methodology. in particular, peg modified gold nanorods (au nr) and decorated with a rgd peptide analog, with uv absorption around , were radiolabeled with cu. the resulting radioactive aunrs (rgd-[ cu]au nr ) showed good potential for cancer theranostics, namely for pet image-guided photothermal therapy [ ]. in fact, in vivo pet imaging studies performed in u mg tumour xenograft rats, injected intravenously with rgd-[ cu]au nr , clearly showed the accumulation of the nps in the liver ( . % id/g, h p.i.), spleen and tumour ( . % id/g, h p.i.), at early and late post-injection times. quantitative roi analysis showed that the maximum tumour uptake of these radiolabeled aunr was reached at h post injection ( . % id/g), which stayed above % id/g even after h of administration. xenograft rats irradiated with laser after injection with rgd-[ cu]au nr showed a remarkable decrease in tumour growth after two days of treatment. in addition, it was observed an insignificant tumour recurrence after days of combined treatment. on the opposite, a clear growth of the tumour was observed in rats submitted only to laser treatment [ ]. within the chelator-based strategy, , , , -tetraazacyclododecane- , , , -tetra-acetic acid (dota) derivatives are the most common choice for the cu-labeling of aunps. hollow gold nanospheres containing, or not, a rdg peptide derivative were radiolabeled with cu via a thioctic acid-peg-dota derivative. in order to enhance the uptake in liver tumours, the haunss without the rgd peptide were coated with iodized oil (lipiodol). the tumoural uptake of the resulting nps ( cu-peg-hauns-lipiodol) was evaluated in materials , , of rabbits bearing hepatic vx tumours, after intravenous (i.v.) and hepatic intra-arterial (i.a.) injections and using pet/ct imaging. these studies showed that the retention of the haunss is highly dependent on the route of administration, being the highest tumoural uptake achieved with i.a. moreover, cu-peg-hauns-lipiodol presented a tumour uptake almost times superior than the observed for the congeners without lipiodol and . times superior than the haunss decorated with a rgd peptide. no significant difference was observed for the tumoural uptake of cu-peg-hauns and cu-rgd-peg-hauns administered intravenously [ ]. the group of tam et al. also reported on dota-containing aunss radiolabeled with cu and on their evaluation in ablative treatments of rabbits with hepatic vx tumours [ ]. the rabbits were subjected to different ablative treatments: nanoembolization (ne) alone and in combination with radiofrequency ablation (rfa+ne), irreversible electroporation (ire+ ne) and laser induced thermal therapy (litt+ne). ne was performed with cu- dota-hollow-gold nanoparticles loaded with doxorubicin, which is the chemotherapeutic agent most frequently used in hepatic cancer therapy. pet images, obtained and h after each treatment, showed a great dependence on the location and accumulation of radionanoparticles with time and with the ablative energy applied in the treatment. the ire + ne treatment resulted in the deposition of nanoparticles in and around the tumoural liver cells, enhancing the possibility to determine a more precise ablation zone by pet imaging [ ]. liu and co-authors evaluated the pharmacokinetics and tumour uptake of gold nanocages cu-dota-peg-auncs ( and nm) using in vivo pet/ct imaging. in normal male c bl/ mice, the nm- cu-dota-peg-auncs showed the best in vivo profile, with high blood, lung and heart retention and reduced reticuloendothelial sys- tem (res) uptake. the biodistribution profile obtained for these auncs in nude mice bearing emt- breast cancer is analogous. the tumour uptake quickly increases overtime ( . ± . % id/g; . ± . % id/g; . ± . % id/g, at h; h and h, respectively) and it is almost four times superior to that observed for the nm- cu-dota-peg- auncs. the authors claimed that this tumour retention over time is particularly important for longitudinal and repeated photothermal cancer treatments. in addition, due to the relatively fast blood clearance (blood uptake higher than % id/g at h and less than % id/g at h), the ratios tumour/muscle and tumour/blood also increase considerably overtime. all these findings prompted the authors to consider these nanoplatforms as a robust tool for further research studies in cancer theranostics [ ]. in vivo pet studies with cu(-dota)-gold nanocages incorporating α-melanocyte- stimulating hormone (α-msh) peptide ( cu-auncs-peg-msh) enabled the very ad- equate imaging of tumours in mice bearing b /f melanoma, at h post injection. the tumoural uptake of these nanoparticles is related to the concentration of the α-msh peptide present in their surface to target the melanocortin receptor (mc r). maximum tumour uptake of these mc r-targeting gold nanocages varied from . + . % id/g to . + . % id/g, at to h post injection. nevertheless, studies to improve the biodistribution profile and reduce the inherent toxicity of cu-auncs-peg-msh are desirable in order to drastically reduce the liver and the spleen uptake (approximately . and times superior to the tumour uptake, respectively) [ ]. dota-based complexes with several metals, namely cu, have a high thermody- namic stability [ ]. however, there are some evidences that dota is not the ideal chelator for cu with possible in vivo release of the radiometal and concomitant accu- mulation in liver [ , – ]. on the other hand, cu-nota complexes (nota = , , - triazacyclononane- , , -triacetic acid) also have similarly high thermodynamic stabil- ity in solution, but in general show superior kinetic stability in vivo compared to their cu-dota counterparts. the same is verified for some other metals, like in the case of ga [ , , , ]. taking this into consideration, pretze and co-authors focused on aunps functionalized with the nota derivative nodaga, aiming to obtain aunps more stable in vivo and materials , , of suitable for dual imaging of prostate cancer using near-infrared (nir) fluorescence and pet. towards this goal, these authors assessed the pharmacokinetics of pegylated aunps carrying nodaga as the chelating agent for complexation of cu and decorated with a nir dye (sidag). to recognize prostate cancer cells, the aunps were further functionalized with a bombesin (bbn) peptide analog ([ – ] bbn) or with a lys-urea-glu (lug) motif for the targeting of the gastrin releasing peptide receptor (grpr) or the prostate-specific membrane antigen (psma), respectively. in vitro assays were performed for cu-aunp- bbn and cu-aunp-lug to assess their acute and long-term toxicity in pc and lncap cancer cell lines, due to the action of the β− radiation. after h of incubation, the toxicity induced by the nanoparticles was higher in the lncap than in the pc cell line. this result was somewhat unexpected for cu-aunp-bbn, since the lncap cell line does not express the gastrin releasing peptide (grp) receptor that is recognized by bbn derivatives. however, after four days of incubation, cu-aunp-bnn displayed higher toxicity in pc cells while cu-aunp-lug had higher toxicity in the lncap cell line, as expected. ex vivo biodistribution studies performed in healthy male sho mouse with co-injection of cu-aunp-lug and aunp-nir-lug showed similar uptake of the fluorescent and radioactive aunps in the different organs, h after injection. however, the biodistribution profile of cu-aunp-nir-lug in male athymic nude mice showed radioactivity uptake in brain, spleen, and pancreas lower than the uptake in the same organs measured based on the respective fluorescence intensities. the authors attributed this discrepancy to the possible release of the nir dye in vivo [ ]. other less common types of chelators have also been explored for the cu-labeling of aunps. the bicyclam plerixafor (amd ) chelator was used to stabilize a gold nan- ocluster ( cuauncs−amd ) that showed high and improved stability. amd is a cxcr antagonist approved for the mobilization of hematopoietic stem cells in lymphoma and multiple myeloma patients, under the trademark plerixafor. cuauncs−amd was evaluated as a pet radioprobe to detect in vivo the expression of the chemokine recep- tor cxcr in a t mouse orthotopic breast cancer model with lung metastases, through pet imaging. it was found a strong correlation between the cxcr receptor levels in the tumour and the quantitative tumoural uptake of cuauncs−amd . moreover, competitive receptor blocking studies confirmed a tumour accumulation mediated by the cxcr receptors. taking together all these findings, the authors claimed that these radio nanoclusters showed a good potential in translational research for the first early cancer and metastasis diagnosis. however, these excellent results were not translated into later phases of primary and metastatic breast cancer. some improvements still need to be made so that cuauncs—amd extend its potential usefulness for the diagnosis of breast cancer and its metastasis, in all stages of the disease [ ]. . . . gallium- /gallium- ga is a gamma emitter suitable for spect imaging while ga is an emerging pet radionuclide (table ). for this reason, the evaluation of / ga compounds as medical diagnostic probes, carried out over the past few decades, has been a very active field of research. contrastingly, the evaluation of nanoparticles labeled with these radioisotopes has been much less intense, namely when compared with cu [ , , ]. as mentioned above, pretze et al. have evaluated cu-aunp-bbn and cu-aunp- lug as new nanotools for the theranostic of prostate cancer. in the same work, these authors have also extended their studies to the ga-labelled congeners. it was observed that gaaunpbbn has a strong internalization in prostate cancer pc cells, within – h of incubation, being mainly concentrated in the cytoplasmic fraction. blockade experi- ments performed in pc and in lncap cell lines with monomeric bbn ( – ) showed a significant reduction in the cellular internalization of gaaunpbbn. analogous results were observed in blockade experiments with lug for gaaunplug in lncap cells. these findings led the authors to conclude that the cellular uptake of these nanoparticles involves, at least in part, a receptor-specific mechanism [ ]. materials , , of silva and co-workers have studied spherical aunps stabilized with thiolated deriva- tives of dota or dtpa (diethylenetriaminepentaacetic acid), proceeding with their ga labeling and their preclinical evaluation in cellular and animal models of prostate cancer. initial in vitro studies indicated that the dota-containing aunps display a higher capa- bility to maintain the radiometal coordination than the dtpa congeners, in the presence of various media or biological substrates [ ]. the aunp-dota nanoparticles were dec- orated with bbn analogs, covalently appended by a unidentate cysteine or a bidentate thioctic group to form the nanoconstructs cbbn-aunp-tdota and bbn-aunp-tdota, respectively. competitive binding assays in prostate cancer pc cells showed that both nanoconstructs have a high affinity towards the grpr; however, there was a significant contrast in the cell internalization behavior of the two radiolabeled nanoconstructs in the same cell line. bbn-aunp-tdota- ga showed a very high and rapid internalization in cells (almost % of the applied radioactivity after min of incubation) with a relatively slow efflux overtime (≈ % after h of incubation). the internalization of cbbn-aunp- tdota- ga was only about %, and remained almost constant during h. these results did not translate to the in vivo performance of these ga-labeled nanoparticles. in fact, their biodistribution profile in balb/c nude mice bearing human prostate pc xenografts was relatively similar, namely in which concerns the uptake in the organs that overexpress grp receptors: moderate tumour uptake and low pancreas uptake for both nps. these results discard, to some extent, that the tumoural uptake mechanism of these nanoparticles in vivo is through an active targeting mediated by grpr. eventually, other factors, such as epr and the protein corona effect, might play prominent role in the in vivo transport of these bbn-containing nanoparticles. additionally, the administration route also plays an important role on the pharmacokinetic profile of the nanoparticles. after intraperitoneal administration, a lower retention of the radioactive nps in the res organs (liver, spleen and lung) is observed, as well as a greater absorption in the pancreas that is accompanied however by a lower tumour uptake. blocking experiments were done for bbn-aunp- tdota- ga using the intraperitoneal administration route and after previous treatment of the tumour-bearing mice with free bbn. it was observed a significant decrease (≈ %) of the pancreas uptake but no alteration was observed in the tumour accumulation. these results suggest that the uptake of bbn-aunp-tdota- ga in the pancreas is possibly mediated by grpr, while in the case of the tumour uptake, the contribution of the epr effect seems to be dominant [ ]. to further expand the theranostic capabilities of these bbn-aunp-tdota platforms, the authors have also studied their loading with gadolinium aiming to obtain new tools for multimodal spect/mri imaging. relaxometric studies showed that the gd-containing aunps display contrast properties for mri t and/or t relaxometry. furthermore, radiosensitization studies showed that these aunps induce radiotoxic effects in prostate cancer pc cells, upon incubation of the cells with the nps and exposure to a dose of gy (γ-photons, kev). these effects were slightly enhanced by the presence of the gd in the aunps. biodistribution studies were performed for gd-bbn-aunp-tdota- ga in pc -xenograft balb/c mice after intravenous and intraperitoneal administration of the nps. the obtained biodistribution pattern is in perfect agreement with that observed for the same aunps without gd. in addition, it was observed a very low uptake in the main organs and a high tumour retention ( . ± . % and . ± . % id/g at and h after injection, respectively) following the intratumoural administration of the nps [ ]. niculae et al. have recently evaluated the added value of using gold radionanoplat- forms to enhance the intracellular retention of ga in tumour cells with respect to the use of the congener radiocomplexes carrying the somatostatin analogs tyr( )-octreotide (toc) and nai( )-octreotide (noc) or a neurotensin (nt) analog. thus, ga-dota-toc, ga- dota-noc and ga-dota-nt were conjugated to aunps and evaluated in vitro in human colon cancer cell line (ht- ). ga-aunpdota-noc and ga-aunpdota-toc provide a % and % improvement relatively to ga-dota-noc and ga-dota-toc respectively, approximately min after the incubation in ht- cells. however, it was materials , , of found that the gain conferred by ga-aunpdota-nt relative to ga-dota-nt was only approximately %, min after incubation in ht- cells [ ]. . . . technetium- m the emission of favorable low energy γ-rays ( kev), suitable half-life ( . h), easy and economical availability of the mo/ mtc generators, justify why mtc remains the most widely used spect imaging radionuclide in clinics [ ]. in the last years, several multifunctional low-generation dendrimer-entrapped gold nanoparticles (denps) radio- labeled with mtc have been developed and reported in literature. shen and co-authors were the first to evaluate in vitro and in vivo gold nps functionalized with low-generation poly(amidoamine) dendrimers (pamam) as nanoprobes for dual spect/ct imaging. for that purpose, the nps were modified with folic acid (fa) as a targeting vector and with a dtpa chelator, which were covalently attached to the pamam dendrimer. the resulting dendrimer/au nanoparticles were radiolabeled with mtc, showing high colloidal and radiochemical stability and absence of toxicity in hela cells, up to concentrations of the or- der of nm. studies in hela-hfar cells, that overexpress folic acid receptors, confirmed the specific uptake of the nanoparticles functionalized with folic acid. however, the study of the biodistribution of the mtc-labeled dendrimer/aunps in a murine hela xenograft tumour model showed significantly higher uptake in spleen, lung, liver and kidney than in the tumour [ ]. related mtc-dendrimer-nanoplatforms, with acetylated or hydroxylated terminal dendrimers, exhibited good properties for the detection of sentinel lymph node by dual spect/ct imaging. on the other hand, it has been shown that mtc-dendrimer- aunps functionalized with a cxcr ligand (fc peptide) can specifically target glioma and other types of cancer that overexpress cxcr receptors, for use in spect/ct dual bioimaging [ ]. mtc-aunp-denps were also evaluated as spect radioprobes for the detection of apoptosis, being proved in vitro that mtc aunp-denps decorated with the duramycin peptide have a high propensity for targeted imaging of apoptotic c cancer cells. mtc-aunp-denps decorated with a rgd analog peptide showed a favorable profile for targeted spect/ct imaging of αvβ integrin overexpressing tumours [ – ]. the capability of pegylated mtc-labeled aunps decorated with a rgd peptide to effectively target αvβ integrin receptors had previously been documented. the preclinical evaluation of these rgd-containing aunps showed that the nanoparticles have a high uptake in the lung metastases ( % of the injected dose at min after intravenous injection) of a t mouse model of breast cancer [ ]. dhawan and co-workers have studied mtc-labeled nps for the non-invasive detec- tion of colon cancer by spect imaging. for this purpose, they have conjugated , , ′- trihydroxytrans-stilbene (resveratrol, res) to the aunps in order to increase their selectivity towards colon cancer cells. the accumulation and retention of mtc-res-aunp in ht colon cancer cells was significantly higher than the congener non-targeted mtc-aunps. biodistribution studies performed in rats with colon cancer confirmed that mtc-res- aunp have an higher uptake ratio colon tumour/normal colon than the non-targeted mtc-aunps, which leads to an improved tumour to background contrast [ ]. recently, shi et al. have developed mtc-labeled polyethylenimine (pei)-entrapped aunps, functionalized with peg and alkoxyphenyl acylsulfonamide (apas) groups (apas- mtc-aupens). due to their negatively charged sulfamine groups and positively charged ammonium groups, apas units are neutral at physiological ph (ph . ) and are positively charged at more acidic ph. the authors have considered that this feature could improve the cellular retention of the nanoparticles in cancer cells, which have a mild acid microen- vironment. this reasoning was corroborated by the results of in vitro studies performed with the fibrosarcoma ht cell line. it has been observed a higher concentration of radioactivity in the cells treated with apas- mtc-aupens, at ph , when compared with the cells treated with the nps not functionalized with apas [ ]. shi and co-workers also developed mtc-aunps functionalized with annexin v for in vivo targeting of apoptotic materials , , of macrophages, which are abundant in atherosclerosis plaques. in vitro studies performed on macrophages (raw . ) with apoptosis induction and in vivo studies conducted on high-fat diet fed apoe−/− mice demonstrated the suitability of these nanoparticles to target specifically arteriosclerotic plaques containing apoptotic macrophages [ ]. sakr et al. have investigated mtc-labeled aunps conjugated with gallic acid and loaded with doxorubicin ( mtc-gallic-aunps-dox) for image-guided drug delivery. the non-labeled aunps display suitable in vitro stability in saline and in rat serum for days. biodistribution studies of the mtc-labeled nanoparticles, performed in female albino swiss mice having ehrlich ascites carcinoma, showed a considerable tumour uptake of . % id/g after h of intravenous injection. furthermore, mtc-gallic-aunps-dox displayed a nearly % tumour retention upon intratumoural injection, at least for h after administration [ – ]. silva et al. have studied aunps stabilized with a dithiolated dtpa (dtdtpa), pre- viously developed by roux and co-workers, as potential glutathione-responsive drug delivery systems. the aunp-dtdtpa were labeled with the [ mtc(co) (h o) ]+ precur- sor and the resulting radiolabeled nps were studied in vitro in the presence of glutathione (gsh). the results pinpointed that gsh promotes the cleavage of the disulfide bonds of the polymeric dtdtpa coating, which can be exploited for gsh-mediated delivery of drugs attached at the dtdtpa framework [ – ]. . . . indium- in is a gamma emitter with a half-life of . d that is suitable for clinical spect imaging. in addition, it also emits auger electrons that are potentially useful for targeted radionuclide therapy. in the last years, there have been only a few studies reported for aunps radiolabelled with in, seeking to demonstrate their potential interest for imaging and/or therapy [ , ]. these studies include the evaluation of the pharmacokinetics and biodistribution of aunps decorated with pmmp (pmmp = dtpa-gly-pro-leu-gly-val- arg-gly-lys-gly-tyr-gly- ahx-cys-nh ), which is a matrix metalloproteinase- (mmp ) cleavable peptide. the pmmp -containing aunps were radiolabeled simultaneously with in and i and were evaluated in tumour-bearing mice by in vivo spect imaging. at h after intravenous injection, in was detected mainly in the blood while i was present in the thyroid, stomach and bladder. this result was attributed to the higher in vivo stability of the in-radiolabeled moiety if compared with the i-radiolabeled one. two types of tumours with different mmp expression levels (high = a ; low = t luc) were implanted in nude mice to explore the ability of the nanoparticles to accumulate in tumours showing mmp activity. spect/ct images showed that the nanoparticles progressively accumulated in t luc tumours with low expression of mmp , reaching h upon intravenous injection a suv value of . ± . ( . ± . % id/g), while a lower suv of . ± . ( . ± . % id/g) was observed in the same period in the a tumours with high expression of mmp . the difference in pharmacokinetics was assigned to the highest mmp level in the a tumours that led to cleavage of the peptide radiolabeled with in and its clearance from the tumour [ ]. aunps loaded with the epidermal growth factor (egf) and radiolabeled with in ( in-egf-aunp) were evaluated in vitro using two breast cancer cell lines with different levels of egfr expression. the in-labelled egf-aunps presented significantly higher levels of uptake and more pronounced radiotoxicity in mda-mb- cells compared with mcf- cells. this reflects the higher egfr expression ( times-fold) of mda-mb- cells versus mcf- cells [ , ]. in another study, in-labeled aunps decorated with pegylated trastuzumab (trastuzumab-aunp- in) were evaluated for the targeting of her -positive breast cancer cells. dark field and confocal fluorescence microscopy showed the perinuclear location of trastuzumab-aunp- in in sk-br- cells having a high her expression. biodistribution studies of trastuzumab-aunp- in in mice bearing subcutaneous mda-mb- xenografts have shown a low accumulation of the nps in the tumour with a high liver uptake [ ]. nevertheless, the intratumoural injection of materials , , of trastuzumab-aunp- in, using the same animal model, led to a significant reduction of the tumour mass over days, without apparent toxicity in normal tissues [ ]. . . . gold- / as can be verified in table , au (t / = . h) and au (t / = . h) are relatively long-lived β− emitters that are suitable for therapeutic use. in addition, both radionuclides emit also γ-photons that allow spect imaging studies. in the case of au, nm gold nanoparticles doped with au decorated with d-ala -peptide (dapta) have been evaluated for in vivo target of the c-c chemokine receptor (ccr ), overexpressed in triple negative breast cancer (tnbc). nanospect/ct images obtained h after intravenous injection of aunp-dapta in a t tnbc orthotopic mouse model showed a heterogeneous pattern of penetration and retention within the tumour, in addition to high liver and spleen accumulation. the images are in full agreement with the results of biodistribution studies, which showed a tumour uptake of . ± . % id/g and a ratio tumour/muscle of . ± . . all together these results led the authors to conclude that aunp-dapta is a promising nanoplatform for the ccr -targeted imaging of triple breast cancer [ ]. biodistribution studies of au-labeled aunps decorated with a non-specific an- tibody (bharglob) in normal rats showed that the accumulation of radioactivity occurs predominantly in stomach and organs of the res system, at h after injection. in an attempt to minimize the unfavorable pharmacokinetics observed, non-specific gammaglob- ulin was co-administered and a considerable decrease in the res uptake was observed (about %) [ ]. loyalka and co-authors estimated the dose distribution delivered by / au-labeled aunps to the tumour sites, inside the human prostate, as well as to the surrounding normal tissues using the monte-carlo n-particle code (mcnp- . . code). a simple geometric model of the tumour, prostate, bladder and rectum was constructed. mcnp simulations showed that the doses are deposited homogenously and mostly within the tumour and marginally in the bladder and rectum. however, the dose deposited by au is significantly higher than the dose deposited by au in the tumour region, as well as in normal tissues [ ]. katti et al. have reported the synthesis of radioactive au-aunps functionalized with mangiferin (mgf) [ ]. the specificity of mgf towards the laminin receptor promoted the accumulation of the aunps in prostate tumours (pc- ) induced in mice. detailed in vivo therapeutic efficacy studies, through the intratumoural delivery of the aunps, showed retention of over % of the injected dose in tumours up to h. by three weeks post treatment, tumour volumes of the treated group of animals showed an over fold reduction as compared to the control saline group. chakravarty et al. have developed au-aunps functionalized with a rgd peptide derivative and studied their suitability for melanoma cell targeting [ ]. in vitro studies showed that the aunps bind to murine melanoma b f cells with high affinity and specificity. biodistribution studies of the aunps administered intravenously in melanoma tumour bearing c bl/ mice showed high uptake in the tumour within h post-injection, with significant decrease at the same time point when co-injected with a blocking dose of the rgd peptide. radiotherapy studies in melanoma tumour bearing mice showed significant regression of tumour growth without apparent body weight loss over the course of days. . examples of radiolabeled aunps for therapeutic applications besides au and au, various other therapeutic radionuclides of the β− or α- emitting types were used to label aunps aiming to obtain enhanced therapeutic effects, namely within a theranostic approach of cancer. as resumed in table and reviewed below, part of these studies comprised also spect imaging experiments since some of materials , , of these radionuclides also emit γ photons during their decay and, for this reason, are also suitable for in vivo imaging. table . examples of aunps labeled with therapeutic radionuclides and respective preclinical studies. radioisotope type of aunps/size/coating (radiolabeling approach) application/study refs. y spherical aunps-loaded nanoparticle depots/ nm/peg, polyglutamide (chelator-based) monte carlo simulations of permanent seed implantation brachytherapy. [ ] aunrs/ nm/peg (chelator-based) biodistribution studies, combined radiotherapy and hyperthermia treatment in prostate du xenograft mice. [ ] i pei-entraped spherical aunps/ . nm (aunp core), nm (pei)/hpao, peg, ctx (chloramine t oxidation) targeted spect/ct imaging and radionuclide therapy in subcutaneous glioma tumour model in vivo. [ ] aunrs/ nm/peg, cyclic rgd (np adsorption) spect/ct imaging and biodistribution analyses in b f and mcf tumour bearing mice [ ] lu dendrimer-entraped spherical aunps/ . nm (aunp core), . nm (dendrimer)/folate, bombesin (chelator-based) radiocytotocixity studies in t d cells. biodistribution studies and optical imaging in t d xenograft mice. [ , ] spherical aunps/ nm/orthopyridyl disulfide, peg, panitumumab(chelator-based) biodistribution/radiotoxicity studies and small-animal spect/ct imaging in mda-mb- xenograft mice. [ , ] aunrs/ nm/peg, polyglutamide (chelator-based) monte carlo simulations of permanent seed implantation brachytherapy. [ ] au spherical aunps/ . nm/cyclic rgd ( au np synthesis) biodistribution and tumour regression studies in melanoma c bl/ tumour bearing mice. [ ] spherical aunps/ nm/mangiferin ( au np synthesis) biodistribution and therapeutic efficacy studies in prostate pc xenograft mice. [ ] at spherical aunps/ nm/peg, trastuzumab (np adsorption) in vitro radiotoxicity studies in human ovarian cancer cell line skov- [ ] ac spherical aunps/ – nm/dotaga (chelator-based) biodistribution and therapeutic efficacy studies in glioblastoma multiform cell line u xenograft mice. [ ] . . beta-emitting isotopes . . . yttrium- yttrium- ( y) is a β− emitter decaying to zr with a half-life of . h and with a decay energy of . mev. it is a hard β− emitter and the emitted particles can penetrate tumour soft tissue to a length of mm. for this reason, y leads to important cross-fire effects and does not require its accumulation in every tumour cell to produce deleterious radiotoxic effects. however, it can kill non-targeted cells in the vicinity of the target tu- mours. ghandehari et al. have reported on the use of aunrs to increase hyperthermia in tumours and to enhance the radiotherapeutic effect of a y-labeled n-( -hydroxypropyl) methacrylamide (hpma) copolymer [ ]. the macromolecular nature of hpma allows it to passively target tumours through the epr effect. prostate tumour animal models were treated with a co-injection of pegylated aunrs and y-labeled hpma, and thereafter were submitted to laser treatment to induce localized hyperthermia. results showed an increase in the uptake of radiolabeled copolymer in the hyperthermia treated prostate tu- mours, with no significant accumulation in non-targeted tissues. additionally, the highest materials , , of reduction in tumour growth was observed in the tumours submitted to hyperthermia and treated with y-labeled hpma copolymer conjugates. althoughmost radioactivity accu- mulation was found in the tumours, the biodistribution studies also showed a significant uptake in the kidneys; however, the histological studies did not show any pronounced damage in the primary organs of the mice. reilly et al. have performed in vivo imaging and monte carlo simulations of nanopar- ticle depots (npd) [ ]. consisting of a porous calcium alginate platform loaded with aunps coated with peg and polyglutamide, and functionalized with a dota derivative for radiolabeling with in, y and lu [ ]. the studies were performed in a way to compare these npds with conventional permanent seed implantation (psi) brachytherapy in mice bearing subcutaneous human breast cancer xenografts. for the simulated npds, y delivered the most homogeneous dose distribution. . . . iodine- iodine- ( i) has a half-life of . d and emits β− particles and γ radiation. it decays in two steps to form the stable xe, initially through beta decay ( kev) followed rapidly after by gamma emission ( kev). lan et al. have reported on the synthesis of i-labelled aunrs decorated with a cyclic rgd peptide derivative for integrin αv β receptor targeting, which is responsible for tumour angiogenesis [ ]. results showed that the aunps were selectively taken up by the tumour in murine melanoma b f cancer bearing mice mainly via integrin αv β -receptor mediated endocytosis, after intravenous administration. however, the biodistribution studies also showed higher uptakes in organs of the res, such as liver, spleen and lungs, most likely due the large size of the aunrs ( . nm, lenght). additionally, when administered in breast cancer mcf tumour bearing mice, there was no significant uptake in the tumours, which was attributed to the low αv β receptor expression in this cell line in comparison with b f . zhao et al. have studied polyethylenimine-entrapped aunps functionalized with a chlorotoxin (ctx) peptide and labeled with i for spect/ct imaging and radionuclide therapy of glioma [ ]. ctx is a peptide capable of targeting various cancer cells including glioma, sarcoma and prostate, and capable of permeating the blood brain barrier (bbb) intact. the aunps were entrapped inside a polyethylenimine polymeric nanoparticle, func- tionalized with peg, chlorotoxin, and -( -hydroxyphenyl)propionic acid-osu (hpao). the presence of the hpao allowed for a facile radiolabeling with i. after intravenous injection of the radiolabeled nps in a subcutaneous glioma-bearing mice, it was possible to visualize through spect imaging a high tumour accumulation, with the highest uptake at h p.i. the congener nps, without the ctx, still displayed some significant tumour uptake at h p.i., but it was less than half intensity when compared with the ones bearing peptide. these results also translated to the in vivo studies performed in orthotopic rat glioma models, where the ctx-containing nps displayed a significant spect signal, which peaked at h p.i., demonstrating the capability of these nps to cross the bbb. . . . lutetium- lutetium- ( lu) has a half-life of . d and undergoes β− decay, emitting β− particles ( kev) but also γ radiation ( kev). as mentioned in the introduction, lu is a soft β− emitter with increasing clinical impact on prrt of cancer. the emission of γ photons allows for the use of lu in preclinical spect imaging. ferro-flores et al. have developed a dota-dendrimer-folate-bombesin conjugate that was used to entrap aunps in the dendritic cavity (denaunp-folate-bombesin). the presence of the folate and bombesin was to improve affinity of the nps to the folate receptor and gastrin releasing peptide receptor, respectively, which are overexpressed in certain types of breast cancer cells. the entrapped aunps provided photophysical properties to the whole nanoconjugate suitable for optical imaging. the final nanoconjugate was labeled with lu, seeking for multimodal platforms suitable for breast cancer cell targeting [ , ]. the radiolabeled nanoconjugate showed specific uptake in breast materials , , of cancer t d cells and provided suitable optical images. plasmonic–photothermal therapy studies in t d cells incubated with denaunp-folate-bombesin showed a higher increase in medium temperature ( . ◦c), compared with the congeners without the entrapped aunps ( . ◦c), which consequently led to a more significant decrease in cell viability [ ]. moreover, preliminary in vivo studies showed quantitative tumour retention h after intratumoural administration of the lu-labeled denaunp-folate-bombesin in breast cancer t d tumour bearing mice [ ]. the group of reilly et al. has studied the in vivo stability of aunps functionalized with different peg derivatives containing dota for lu labeling [ ]. these peg derivatives varied on their thiol group responsible for aunp surface conjugation, including monothiol, dithiol and multithiol groups. biological studies showed that the aunps containing the multi-thiol pegs displayed the highest stability in vitro and the lowest liver uptake in vivo. the group also developed new aunps constructs functionalized with monothiolated peg chains linked to dota and with panitumumab for epidermal growth factor receptor (egfr) targeting [ ]. these multifunctional aunps were labeled with lu and underwent a preclinical study as nanoseeds for brachytherapy of locally advanced breast cancer. the preclinical studies of the panitumumab-containing aunps comprised the intratu- moural administration of the lu-labeled nanoconstructs in cd- athymicmice bearing subcutaneous mda-mb- xenografts. it was observed a high radioactivity concentration in the tumour at h post-injection, but with a significant decrease ( – fold) after h of administration. however, when compared with the respective congeners without the egfr-targeting panitumumab, the uptake in tumour was not significantly different; and in both cases, some accumulation in non-targeted organs like liver and spleen had increased about – fold between to h p.i. dosimetry studies estimated that the tumour receives the highest dose, and the liver, spleen and pancreas are the non-targeted organs more exposed to radioactivity. long-term treatment studies showed the inhibition of tumour growth in mice treated with both targeted and non-targeted lu-labelled aunps, without toxicity in normal tissues. additionally, non-labelled nps did not display any visible tumour growth inhibition [ ]. . . alpha-emitting isotopes . . . astatine- astatine- ( at) has a half-life of . h and undergoes a branched decay: . % decays to bi (t / = . y) with α emission ( . mev); . % decays by electron capture to po (t / = ms) that then quickly decays to the stable pb with α emission ( . mev). majkowska-pilip et al. have reported on aunps modified with peg chains and attached to the antibody trastuzumab. this antibody not only possesses chemotherapeutic properties but it also has affinity towards her receptors, which are overexpressed in certain breast cancer cells [ ]. the aunps were labeled with at by adsorption of the radionuclide to the nanoparticle surface by taking advantage of the high affinity of gold for heavy halogens. in vitro biological studies showed a higher affinity and cytotoxicity for the trastuzumab-containing aunps, compared with the ones without the antibody, towards her -overexpressing human ovarian skov- cells. additionally, it was also verified that the trastuzumab-containing aunps were able to internalize into the cells and deposited near the nucleus. . . . actinium- actinium- ( ac) is a radionuclide that decays to fr with a t / of . d and through α emission ( . mev). bouziotis et al. have reported on the synthesis of aunps functionalized with a thioctic acid-modified dotaga and radiolabeled with ac. the resulting ac-labeled aunps were evaluated as an injectable radiopharmaceutical form of brachytherapy for local radiation cancer treatment, using cellular and animal models of glioblastoma multiforme [ ]. in vitro radiocytotoxicity studies in glioblastoma multiforme u mg cells showed a significant cell death upon exposure to the radiolabeled materials , , of aunps. consistently, their intratumoural administration in u mg tumour bearing mice resulted in the retardation of tumour growth, even with a low injected dose ( kbq) per mice. however, while biodistribution studies showed the highest uptake of radioactivity in the tumours, some significant accumulation in non-targeted organs like liver, kidneys and spleen was observed. . . boron neutron capture therapy (bnct) bnct is a technique based on the nuclear reaction b(n, α) li that involves a neutron-capture process causing fission reactions that originate high-let alpha parti- cles ( kev/µm) [ ]. bnct differs from the classical radionuclide therapy discussed previously, as the therapeutic radiation delivered by bnct is triggered by the external neutron irradiation of the boron atoms that are accumulated by tumour cells. however, both methodologies are categorized as internal radionuclide therapies, and bnct has been gaining increased interest in the last few years, with some examples reported in literature combining aunps with this technique. llop et al. recently synthesized aunps (core diameter of . ± . nm; hydrodynamic diameter of . ± . nm) functionalized with peg and an anion-rich cobalt bis (dicar- bollide), commonly known as cosan, and evaluated its potential for bnct in mouse model xenografts with human fibrosarcoma ht cells [ ]. these cosan-containing nps have been radiolabelled with i (in two different positions, the core and the shell) to allow tracking of their biodistribution pattern by pet imaging. the studies showed that the radiolabeled nanoparticles are stable in vivo, since no significant iodine accumulation was detected in the thyroid during the imaging studies ( – h). however, no significant uptake was found in the tumours. the maximum values obtained are below . % id cm− , regardless of the labelling approach used (core vs shell labelling), and progressively decreased over time being almost undetectable at t > h. to improve the tumour uptake and retention of boron cage-containing aunps for bnct, the same authors synthetized smaller gold nanoparticles (core size = . ± . nm, hydrodynamic diameter of . ± . nm) loaded with peg, cosan and functionalized with tetrazine (tz) units [ ]. to enable the in vivo screening of the biodistribution of aunps by positron emission tomography (pet), the nanoparticles were radiolabelled with [ cu] cucl (core labelling). pet biodistribution studies were conducted in cancer- xenograft bearing mouse model with her positive bt- breast cancer cells, using both a simple and a pre-targeting strategy. for a pre-targeting approach, trastuzumab, an antibody that selectively binds to her , was functionalized with trans-cyclooctene (tco) ligand, to promote the in vivo click reaction with tetrazine present in the radiolabeled aunps and was administered intravenously h before the aunps. pet-ct scans were performed ≈ , , , and h. the accumulation in the tumours was clearly visualized by pet images. no added value was observed from the pre-targeting approach. indeed, the maximum tumoural uptake was achieved at t = h after aunp injection, with values of . ± . % id cm− and . ± . % id cm− for pre-targeting and normal strategy, respectively. . concluding remarks in this review, we have highlighted some of the most relevant aunps developed in the last few years for nuclear medicine applications, particularly for cancer treatment. to this date, aunps have provided interesting platforms for the delivery of radioisotopes to cancer cells and tissues, with the advantage of their low toxicity, biocompatibility and enhanced biological half-life. despite these encouraging progresses, there is the need to optimize the efficacy of most radiolabeled aunps to obtain new nanotools with clinical usefulness. to fulfil this goal, still is necessary the development of novel aunps core structures and their controlled modification with different molecular entities to further improve their pharmacological profile. in this respect, one can profit from recent achievements on site- materials , , of specific approaches to modify clinically relevant biomolecules and from technological advances in the production of innovative medical radionuclides. having in consideration the reported preclinical studies, radiolabeled aunps are not expected to be a valuable alternative to more conventional molecular radio-pharmaceuticals designed for systemic administration, such as radiolabeled peptides or antibodies that are already in clinical use for peptide receptor radionuclide therapy (prrt) or radioim- munotherapy (rit). in fact, a large majority of the tested radiolabeled aunps have shown a sub-optimal biodistribution with more or less prolonged accumulation in non-target organs, mainly the liver and spleen, which can lead to unfavorable radiation dosimetry. by contrast, we consider that the use of radiolabeled aunps in combination with topical administration, as a kind of “nanoseeds”, might open new avenues in cancer theranostics with minimization of detrimental side effects. this is particularly true when using thera- peutic radionuclides that emit high let and short-range particle radiation, as is the case of alpha or auger emitters. in this respect, aunps are clearly advantageous over classical molecular radiopharmaceuticals. the nps are expected to exhibit a higher retention in the tumors, following their intratumoral administration, when having the proper size, shape, charge and/or coating. moreover, the development of multifunctional “nanoseeds” for the simultaneous delivery of radionuclides, cytotoxic drugs and/or radiosensitizers will allow combined chemo- and radiotherapy regimens with a better chance to surpass radio/chemoresistance processes. hence, it is our conviction that aunps can play a role in future applications of nuclear medicine by providing unique combinations of imaging and therapy modalities to improve the diagnosis, treatment and management of cancer. author contributions: writing—original draft preparation, f.s. and m.p.c.c.; writing—review and editing, all authors. funding acquisition, a.p. all authors have read and agreed to the published version of the manuscript. funding: this work was supported by fundação para a ciência e tecnologia (project ptdc/med- qui/ / ). conflicts of interest: the authors declare no conflict of interest. abbreviations α alpha α-msh α-melanocyte-stimulating hormone auncs gold nanocages aunp gold nanoparticle aunr gold nanorod auns gold nanoshell aptes -aminopropyltriethoxysilane β beta bbb blood brain barrier bbn bombesin bnct boron neutron capture therapy cli cerenkov luminescence imaging ct computed tomography ctab cetyltrimethylammonium bromide ctx chlorotoxin dapta d-ala -peptide t-amide dc dendritic cell dls dynamic light scattering dota , , , -tetraazacyclododecane- , , , -tetraacetic acid dox doxorubicin dplns draining popliteal lymph nodes dtdtpa dithiolated dtpa dtpa diethylene triamine pentaacetic acid ec electron capture materials , , of ecis. european cancer information system egfr epidermal growth factor receptor epr enhanced permeability and retention grpr gastrin releasing peptide receptor hnscc head and neck squamous cell carcinoma hpao -( -hydroxyphenyl)propionic acid-osu hpma n-( -hydroxypropyl) methacrylamide her human epidermal growth factor receptor it isomeric transition let linear energy transfer lpffd cys-leu-pro-phe-phe-asp mc r melanocortin receptor mri magnetic resonance imaging naa neutron activation analysis net neuroendocrine tumours nir near-infrared nmr nuclear magnetic resonance nodaga , , -triazacyclononane- -glutaric acid- , -acetic acid nota , , -triazacyclononane- , , -triacetic acid np nanoparticle npd nanoparticle depots nta nanoparticle tracking analyses peg polyethylene glycol pet positron emission tomography p.i post-injection prrt peptide receptor radionuclide therapy psi permanent seed implantation psma prostate-specific membrane antigen res reticuloendothelial system rgd cyclic arginine-glycine-aspartic acid rie-aunp radionuclide-embedded gold nanoparticles roi region of interest sem scanning electron microscopy sfb n-succinimidyl- -fluorobenzoate spect single-photon emission cumputed tomography spr surface plasmon resonance suv standardized uptake value tate octreotate tem transmission electron microscopy tnbc triple-negative breast cancer tnf-α tumour necrosis factor alpha xps x-ray photoelectron spectroscopy xrd x-ray diffraction references . source: 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fick, ; richeson, ). therefore, a zootherapeutic project was under- taken in a nursing home for elderly people in naples, italy. this project started in february at the home health care for the elderly. in this letter, we present the results of the work conducted in – , in which we proposed a rehabilitative psychosocial activity with a group of patients, mediated by a team of two dogs and two clinical operators. the two dogs used in the intervention were a -year-old female labrador, and a -year- old sterilized female australian shepherd. the dogs were specifically trained as co-therapists and underwent regular veterinary checks, according to guidelines of the us center of disease control. operators involved in the study received special education and have accumulated many years of experience in the field, according to guidelines of the delta society. additionally, the dogs have been trained with regard to their behavior and carefully inspected by veterinary behaviorists, while health checks have been made by veterinarians attached to the public health service. the clinicians in the zootherapeutic team were a veterinarian and a physician. the veterinarian was trained in counseling, while the physician was specialized in psychological symptoms and in the proxemic reading of group activities. a sample was selected of subjects, two males and females, with dementia ( %) and organic disorders ( %) in high comorbidity with psychiatric (depressive) disorders and cognitive deficit, with an average age between and years. the sample excluded those residents with a fear of animals or allergies to animals. this general assessment profile was aimed to provide an overall description of the intervention effects, to find a specific area of sensibility to the intervention. each session lasted one hour, and was performed weekly, on the same afternoon, and it was video-recorded with the patients’ permission. before starting each session, a clinical update was planned with the geriatrician caring for the patients. according to the clinical condition of the patients and the weather, the session was performed indoors or outdoors. in this activity setting, the subjects sat together in a half circle with the team interacting socially or individually. all the interactive work with the pets was divided into two kinds: caring and playing. the tests used to assess the general clinical impact of our pet therapy intervention were: mini-mental state examination (mmse; folstein et al., ), geriatric depression scale (gds; yesavage et al., ), performance test of activities of daily living (adl; katz et al., ). all these standardized tests were executed before the activities and six months after. the rating scales used in this study explore a wide group of psychiatric, cognitive, and adaptive variables. the mean adl score was . at t and . at t . a particular subgroup of / patients ( %) showed the same values at t and t . the mean of gds score was . at t and . at t . no subgroup or individual showed significant values, apart from / ( %) patients who had a light decrease ( points) in their depressive mood. the mean mmse score was . at t and . at t . all the participants took part regularly in the proposed activity, without missing sessions. no statistically significant difference was found between t and t in the whole group. the results of the mmse show normal deteri- oration of cognitive functions in geriatric age. it is remarkable that there was a significant improvement in the subgroup with the lowest cognitive function. this result suggests that the treatment described stimulates participation and residual cognitive function in patients who are in a in serious condition but who are still able to work in a team. the assessment of independent living (adl), measured six months later, shows a slight worsening only in one group of patients, particularly those with serious cognitive impairment, indicating instead that a large part of the sample retained its skills, in contrast to the general trend of the age group evaluated. this can be partly attributed to the https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core letter stimulus of empathic perception, personal and social, in the zootherapy group. the results of the gds showed a reduction of depression in the group of elderly patients with neurological and/or internistic disabilities. this result proves that the zootherapeutic activity group is successful and low cost. as expected, in the cognitive area (mmse) no different extent or slow decline in the logical- mnemonic skills were observed. the level of evidence according to evidence based medicine (ebm) is based on prospective studies in small groups without control, relevant evidence in a generally new field, and especially in the treatment of this type of patient groups. finally, this pilot study, although limited in some statistical and methodological issues, indicates that it is possible to use and necessary to further explore the benefits of animal therapy in the areas of personal autonomy and psychological function in groups of elderly hospitalized persons, particularly in subgroups with problems of depressed mood but without serious mental impairment, independently of motor disabilities or, more importantly, difficulties in verbal language. conflict of interest none. description of authors’ roles lfm realized the study design, performed the activities of pet therapy, coordinated the zootherapeutic team, analyzed the data, and revised the paper. mf participated in the study design, and wrote and revised the paper. as analyzed the data, and wrote and revised the paper. ea and mt carried out the emotion and behavioral assessment and analyzed the data. fm revised the paper. adm checked the dog health status and ensured relationship with asl na . af revised the paper. references fick, k. m. 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( ). development and validation of a geriatric depression screening scale: a preliminary report. journal of psychiatric research, , – . lucia francesca menna, marzia fontanella, antonio santaniello, eduardo ammendola, maddalena travaglino, francesca mugnai, annamaria di maggio and alessandro fioretti dipartimento di patologia e sanità animale, università degli studi di napoli federico ii, napoli, italy dipartimento di psichiatria, neuropsichiatria infantile, audiofonia e dermatovenereologia, seconda università di napoli, napoli, italy association “antropozoa” onlus, firenze, italy criuv asl na , napoli, italy https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core household pets and depression among urban adolescents by mary margaret (molly) nevin-haas b.s.n., the university of british columbia, a thesis submitted in partial fulfillment of the requirements for the degree of master of science in nursing in the faculty of graduate studies (school of nursing) we accept this thesis as conforming to the required standard the university of british columbia october © mary margaret (molly) nevin-haas, in presenting this thesis in partial fulfilment of the requirements for an advanced degree at the university of british columbia, i agree that the library shall make it freely available for reference and study. i further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. it is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. (signature department of graduate studies, school of nursing the university of british columbia vancouver, canada date ^ c,t,c;>-b-e.■_,, q de- ( / ) ii abstract this study was designed to describe the prevalence of depression among a group of adolescents and examine the relationships between depression and presence of pets in the home, primary ownership of pets and perceived degree of attachment to the pets by the subjects. the coping conceptual framework of folkman and lazarus ( ) provided the structure for the study. subjects were grade nine males and females attending three vancouver and three victoria secondary schools. the instruments utilized to gather the data were the center for epidemiologic studies depression scale (ces-d) (radloff, ) and the adolescent and pet characteristics questionnaire, developed by the researcher. the subjects completed the instruments anonymously in classroom settings. among the grade nine students sampled, . % demonstrated no depressive symptoms, . % demonstrated what were classified as mild symptoms of depression, . % demonstrated moderate symptoms of depression, and . % of those sampled indicated severe depressive symptoms. female adolescents were significantly more depressed than their male counterparts with mean depression scores being . and . , respectively. those subjects with pets in the home were significantly less depressed than their counterparts without household pets. there was no relationship between gender and pet ownership combined with level of depression. an analysis of primary pet ownership indicated that subjects who owned their own pets were significantly more depressed on a whole than those in homes where the pet was owned by the entire family. perceived degree of attachment to the household pet was not related to depression among the subjects. conclusions are drawn from the findings and implications for nursing practice and research are discussed. iii table of contents abstract^ ii table of contents^ iii list of tables^ vi list of figures^ vii acknowledgements^ viii chapter one: introduction background to the problem^ problem statement^ purpose^ research questions^ conceptual framework^ definition of terms^ assumptions^ limitations^ significance of the study^ organization of thesis^ chapter two: review of the literature adolescent depression^ pets and health in humans^ pets and physical indices of stress in humans^ pets and emotional health in humans^ summary^ chapter three: methods instruments^ adolescent and pet characteristics questionnaire^ center for epidemiologic studies depression scale^ iv protection of human rights^ sample^ data collection^ data analysis^ chapter four: presentation and discussion of findings response rate^ demographic characteristics^ gender^ age^ school performance^ family composition^ country of origin^ primary language^ residence^ pet demographic information^ presence of household pets^ types of pets^ identified favorite pet^ pet names^ duration of pet ownership^ reason for acquiring pet^ primary ownership of pet^ pet attachment^ findings related to research questions^ question one: prevalence of depression^ question two: relationship between gender, pet presence and depression^ v question three: relationship between pet ownership and depression question four: relationship between pet attachment and depression^ summary^ chapter five: summary, conclusions, and implications for nursing summary^ conclusions^ implications for nursing^ nursing practice^ nursing research^ references^ appendices a. adolescent and pet characteristics questionnaire^ b. center for epidemiologic studies depression scale^ c. letter of school consent and consent form^ d. letter of parental informed consent and consent form^ e. information and instructions for questionnaire^ f. density distribution of ces-d scores^ vi list of tables table^ page . ages of subjects^ . school performance of subjects^ . parents living at home^ . siblings living at home^ . sibship position of subjects^ . regions and countries of origin of subjects and parents^ . subjects and parental birth regions^ . primary languages used at home^ . years of residence in canada and current neighbourhood^ . favorite pet categories and types^ . pet name categories and examples^ . categories of ces-d scores^ . anova summary table for gender, pets, and ces-d scores (n= ) list of figures figure page . the coping conceptual framework: pets as mediators of emotion in adolescent depression (adapted from folkman and lazarus, ). . numbers and percentages of subjects by school . pet ownership . perceived attachment to pet vii viii acknowledgements this thesis could never have been realized in its current form were it not for the kindness, assistance, and encouragement i received from many special individuals. most importantly i would like to thank my thesis supervisors dr. marilyn willman and gloria joachim. dr. willman accepted the position of chair of this committee in her final year as professor and director of the school of nursing, her dedication and input to this project could not be overemphasized. gloria joachim has been with the project since its conception, her encouragement and clarity of vision often kept things going though obstacles such as unfavourable media coverage of school surveys and school board strikes. these individuals gave me the rare and valued combination of freedom of content, and direction in structure. i would also like to thank and acknowledge dr. anna marie hughes who offered valuable critique in the review of this work; as well as janet ericksen and dr. ann hilton for their assistance in the proposal stage of this project. with regard to the long and frequently frustrating process of finding subjects, court brousson, nicole chagnon, eileen eby, andree johansson, gordon may, ian mcewen, patrick mitchell, rhonda morrisson, stephanie nevin, jack nickolichuk, gary puder, janice phillips-sim, lee simpson, sharon reid, joyce tinnion, frank vansoldt, and sheila wareing all deserve recognition for their assistance in the recruitment of subjects. special acknowledgement is gratefully extended to janice phillips-sim and frank vansoldt, whose extra efforts in promoting this study with their students were instrumental in achieving the number of subjects for this study. i would also like to thank and acknowledge the parents of the subjects for granting their consent for their children's participation as well as the students who took the time and effort to transport consent forms home and fill out the instruments for this study. ix statistical methods and analyses of this project were patiently and gratefully clarified by dana atagi and gordon haas. support and encouragement was also always afforded me by my employers and supervisors throughout these years. for recognition of my research needs during these times i would like to thank marsha ablowitz, rhea arcand, ralph buckley, lee simpson, sally thorne, and marilyn willman. this work was specifically encouraged by gordon haas, louisa nicholls, and organizations such as the human animal bond association of canada and the delta society of the united states. it was inspired by past and present animals who have impacted my view of the world. for this, i would like to extend a unique thank you to abigail, amos, baxter, franklin, gremlin, greta, oscar, taco, and wrangler. finally, none of this work could have been enjoyable, much less possible, without the continuous support, respect and encouragement i received from my family, and at home from my husband gordon haas and our own set of animal companions (baxter, franklin, and oscar). chapter one introduction background to the problem fossil remains indicate that the domestic relationship between humans and animals dates back approximately , years to the preagricultural period of human history just following the end of the last global ice age (davis & valla, ). although there is controversy as to the motivation behind the original formation of the relationship (whether it was one of companionship or one of utilitarian purpose), there is general consensus that this relationship has persisted throughout history and is strongly prevalent across a variety of age groups and human cultures today (bustad & hines, ; messant & serpell, ; odendaal & weyers, ; ritvo, ; serpell, ). levinson ( , , , ) was one of the first individuals to study the nature of the relationship between humans and animals. he addressed the health value of human contact with the natural environment in an increasingly industrialized society. "when man is forced to live and work deprived of contact with nature, he loses much emotional strength" (levinson, , p. ). he furthered stated that encounters between people and animals are a form of contact with nature that may influence emotional strength of humans: we need animals as allies to reinforce our inner selves. we must revive our intimate associations with nature and its animals if we are to survive as the dominant species on earth. it is of course possible that man can survive without animals, but we would surely be a depleted race, shorn of most of our emotional strength ( , p. ). impairment in the emotional strength of individuals is a symptom which is frequently associated the clinical disorder of depression. depression has been demonstrated to be more prevalent in urban as opposed to rural settings (klerman & weissman, ). frequently called the "common cold of mental disorders" (o'hara, , p. ), depression rates among adults in urban settings have been reported to be as high as % (klerman & weissman, ). the etiology of depression in adults is believed to be twofold. both physiological genetic make-up as well as psychological response to losses and stressors contribute to its development (klerman & weissman, ; lapierre, ). in keeping with this bivariate foundation, the treatment of depression in adult populations has been shown to be equally effective with the use of antidepressant medications or cognitive therapy (beck, holton, young, bedrosian, & budenz, ; murphy, simons, wetzel, & lustman, ). depression among adolescents is not as well understood as that among adults. the reported prevalence of severe depression in the former group varies from % (clarke, lewinsohn & hopps, ) to % (pronovost, cote & ross, ). in some studies, the use of antidepressant medications has been found to be no more effective than placebos in treating adolescent depression (kramer & feiguine, ; maclean, ; puig-antich, et al. ; simeon, ). such studies suggest that depression among adolescents may be more commonly a result of psychological factors than of biological determinants. despite the vague understanding of adolescent depression, it is well-documented that adolescents with depression are at increased risk for dropping out of school, substance abuse, acts of delinquency, non-consensual sexual activity, and suicide than adolescents without depressive symptoms (clarke, ; mcdermott et al. ; reinherz, frost, & pakiz, ; simeon, ). both of the aforementioned concepts of a human-animal relationship and depression among adolescents have implications for nursing. most models of nursing include individuals' responses to their environment as a factor influencing health (riehl & roy, ). domestic animals in the form of household pets are an integral part of the environment of many individuals. therefore, the impact pets may have on the well-being of their owners becomes a concern for all phases of the nursing process (mcmahon, ). it remains to be determined whether the sole presence of a pet in the home may constitute the beneficial bonding referred to by levinson ( , ) or if, in fact, there are other factors which determine whether humans receive health benefits from pets in their homes (johnson, garrity, & stallones, ). the second concept, depression among the adolescent population, also has implications for nursing. nurses care for individuals across the lifespan. the care provided by nurses encompasses biological, psychological and social components of each individual's health (johnson, ). the mental health of adolescents is a specialized health focus of a population of individuals within the realm of nursing practice (canadian nurses association, ). problem statement it has been postulated that the alienation of humans in an urban setting from their natural environment may be related to the increased prevalence of depression (klerman & weissman, ) as well as an inability to recover quickly from stressful events (ulrich, simons, losito, fiorito, miles, & zelson, ). additionally, it has been noted that human contact with animals may be emotionally strengthening (levinson, ). the presence of pets can potentially act as a link between people living in an urban setting and their natural environment (katcher & beck, ; phineas, ). the literature notes the effects of pets on the emotional well-being of several different populations; however, there have been no studies which describe the relationship between the presence of household pets and prevalence of depression among urban adolescents. if there is such a relationship, and hence the possibility of altering depression and associated factors such as suicide, delinquency, and substance abuse, it behooves nursing to explore this potential. the identification of the possible implications of the centuries old relationship between humans and animals for the mental health and future of our youth has significance for nursing knowledge, practice, and improved health care. purpose the purpose of this study is to describe the prevalence of depression in a sample of grade nine adolescents from two large urban areas and to examine the relationships between prevalence of depression, presence of pets in the home, primary ownership of the pets, and perceived degree of attachment to the pets by the subjects involved. research questions this study proposes to answer the following research questions: . what is the prevalence of depression in a sample of urban adolescent males and females currently attending grade nine in selected vancouver and victoria secondary schools? . what is the relationship between the prevalence of depression and the presence of pets in the homes of urban adolescent males and females currently attending grade nine in selected vancouver and victoria secondary schools? .^what is the relationship between prevalence of depression and primary ownership of household pets among urban adolescents currently attending grade nine in selected vancouver and victoria secondary schools? .^what is the relationship between prevalence of depression and perceived degree of attachment to pets among urban adolescents currently attending grade nine in selected vancouver and victoria secondary schools? conceptual framework the theoretical framework of coping as proposed by folkman & lazarus ( ) is utilized in the conceptualization of this study (see figure ). this framework values an open and interactive system between people and their environment and views coping as a multidimensional process inherent within this system. it describes coping as a constantly changing response to person- environment encounters and emotional appraisals. the use of such a coping framework is consistent with that used in other studies of human-animal interactions (carmack, ). the bidirectional relationship between emotion and coping is an important aspect of the framework. the individual's appraisal of an event is related to an emotional response, which is related to a mediating method of coping. this coping behaviour, in turn, leads to an emotional reappraisal of the same event or an alternate occurrence. folkman and lazarus ( ) stress the importance of the "mediating" act of coping. a mediating variable is a factor which changes the relationship between the antecedent and the outcome variable. mediating variables are created within the context of the encounter. the response of "coping" is such a mediator. coping is formulated during the encounter and changes the original appraisal and its accompanying emotion in some way. such a framework correlates well with the conceptualization of this study. the adolescent assumes the position of the individual in the model, with the perceived or actual stressors and/or losses representing the environmental emotion (study measurement) person / environment encounter adolescent and etiologic factors of depression coping (use of pets) problem focussed^emotion focussed new person - environment encounter figure . the coping conceptual framework: pets as mediators of emotion in adolescent depression (adapted from folkman and lazarus. ). encounter(s). (the precise etiology of depression cannot be limited to one occurrence alone.) the preliminary emotional response to the appraisal of these stressors may then be represented by depression. the presence of household pets may act as a resource in the formation of mediating coping responses which may then interact with the depressive response to cause a reappraisal of the etiologic factor or the initial emotion and provide an alternate emotional response. folkman & lazarus's ( ) model is used in discovering the nature of the relationship between depression experienced by urban adolescents, pets as a coping resource, and an altered form of the original depressed emotional response. as figure indicates, this model proposes a feedback loop. the use of mediating coping resources influences emotional responses by providing an alternate appraisal of events than that which was obtained prior to the use of the coping resources. the use of this mediating coping resource will then be utilized by the individual on an ongoing basis in the face of similar emotions, thereby replacing the original emotion with a more suitable emotional response. definition of terms for purposes of this study, the following terms will be defined as stated below: adolescent: any youth between the ages of and currently attending grade nine in selected vancouver and victoria secondary schools; attachment: an individual's subjective report of emotional closeness or affection towards an animal in her / his home, as measured by the adolescent and pet characteristics questionnaire (appendix a); depression: an emotional state characterized by low mood, apathy, anhedonia, and lack of energy, as measured by the center for epidemiologic studies depression scale (ces-d) (appendix b); pet: any non-human, non-utilitarian animal which is currently living in the same household as the subject and is cared for by some member of that household; primary ownership: an acknowledgement by the subject as to which household member has recognized possession of the pet. this generally implies responsibility for pet care-giving; urban: a city and surrounding geographic area characterized by its population density and non-resource based nature of employment. assumptions the study is based on two primary assumptions. the first assumption is that those adolescents who are depressed at the time of the survey will have the concentration and motivation to complete the instruments in their entirety. the second assumption is that all the adolescents surveyed will respond truthfully to the questions on the instruments. limitations the limitations inherent within this study involve both design and environmental factors. the findings of the study are generalizable only to subjects similar to those of the population sampled. the survey design accounts only for contact that the adolescents may have with the pets that currently live within their households. the subjects were sampled over a four-month period from october to january . the study followed the implementation of a survey (mccreary, a, b) that raised some parental objections (lamb, a, b; odam, ; truscott, ). it is possible that the negative press from the previous survey may have had an impact on subjects' participation in this study. significance of the study there is currently a lack of consistent information about the prevalence of depression in the general population of urban adolescents. recently, much attention has been paid to adolescent mental health because of the rising incidence of suicide (a potential consequence of adolescent depression) in this age group (children and youth at risk steering committee, ; clarke, ; conrad, ; mcdermott et al., ; pronovost et al., ;). this study will provide information about the prevalence of adolescent depression in selected vancouver and victoria secondary schools. also, there is a paucity of research validating the benefits of pets on individuals' mental health as described in the lay literature (robb & stegman, ). this study will add to the body of knowledge related to the role which pets may play in adolescent mental health. the above is important for nurses who find themselves in contact with adolescent clients or families with adolescents. by understanding the prevalence of depression in this population and its descriptive parameters, nurses can increase their knowledge and ability to provide early detection and prompt intervention for those individuals at risk for the more serious consequences of these pathological "blues" (mcdermott et al., ; offer & schonert-reichl, ; reinherz, frost, & pakiz, ). further, by analyzing the nature of the relationship between prevalence of depression and pets in the homes of urban adolescents, differences between the depressed and the mentally healthy adolescent may be identified. the results of this study may assist the practicing nurse in determining whether to include an assessment of pet ownership and interaction (davis, a, b) when analyzing the coping mechanisms of youth. as levinson ( ) so clearly stated two decades ago: i am sure that the majority of my professional colleagues would agree that our precious twentieth century youngsters will probably mature in a chaotic, disturbed environment. if we have a therapeutic tool such as the use of pets as a mental hygiene adjunct, it behooves us to explore and develop fully the possibilities of this adjunct. if we do not, we as adults must take full responsibility for the consequences of our neglect (p. ). organization of thesis chapter one has provided an introduction to the nature of the study, including the background to the problem, the purpose of the study, the research questions, conceptual framework, assumptions, limitations, and significance of the study. chapter two outlines the theoretical basis of the study with a review of selected literature pertaining to the two central themes of the study, namely depression and the mental health benefits of pets. the research methods used in the study are described in chapter three. in chapter four, the findings are presented and discussed. finally, chapter five presents the summary, conclusions, and a discussion of the implications for nursing practice, education, and research. chapter two review of the literature the literature review examines the current state of knowledge regarding adolescent depression as well as the nature of human and animal relationships and the potential mental health benefits of pets. adolescent depression only within the past decade has increased attention been given to the distinction between normal adolescent frustration or moodiness and its pathological variant, adolescent depression (greydanus, ; maclean, ; mcdermott et al., ; offer & schonert-reichl, ; reinherz et al., ; simeon, ). this recent interest may be largely attributed to the rapidly increasing numbers of adolescent suicides and a desperate societal attempt to understand some of the phenomena contributing to suicide, the second leading cause of death among north american youth (conrad, ). in the past twenty years, the suicide rate for adolescents between the ages of and has risen %, compared with a . % increase for the general population (conrad, ). in canada, the suicide rate for to year old adolescents doubled in ten years. for this age group, the suicide rate is . deaths per , representing one out of five deaths (pronovost et al., ). depression has been correlated with suicide as well as with other undesirable outcomes and behaviours among youth. studies have indicated that to % of suicidal adolescents have feelings of depression (pronovost et al., ). however, not all suicidal individuals are depressed nor are depressed individuals necessarily suicidal (greydanus, ; mcdermott et al., ). other undesirable outcome correlates of adolescent depression include an increased risk for dropping out of school, substance abuse, non-consensual sexual activity, and acts of delinquency (clarke, ; mcdermott et al., ; reinherz et al., ; rogers, ). longitudinal studies are currently underway to test these relationships (weissman et al., ). reinherz et al. ( ) studied a group of adolescents from their freshman to their senior year in high school. they found a significant correlation between drop-out rates and depressed states in adolescent males over all other groups. for adolescent females who were also depressed, substance abuse rates were significantly higher than for non-depressed females or males of either group. thirty-three percent of these females reported "being high on marijuana all day and in school" (p. ). depressed females also began drinking alcohol one year earlier (age ) than did all other adolescents surveyed. although the stability of depressive symptoms from grade to grade was only moderate ( %), individuals who were depressed in grade were . times more likely than their non-depressed peers to also be depressed in grade (reinherz et al., ). in addition to these behavioural concerns, poor academic performance has also been frequently correlated with a high incidence of depression among adolescents (baron & perron, ; blechman, mcenroe, carella, & audette, ; reinherz et al., ; weissman et al., ). mcdermott et al. ( ) surveyed a random sample of grade eleven and grade twelve students from a south central united states secondary school. the center for epidemiologic studies depression scale (ces-d) was used to measure depression symptoms. scores on the ces-d were then correlated with a variety of reported health practices. the investigators determined that suicidal ideation was highly correlated with depression and was reported by . % of the respondents. health behaviours which were moderately correlated with depression included using recreational drugs or alcohol, overeating, and engaging in non-consensual sexual activity. health behaviours demonstrating a weak correlation to adolescent depression were abstaining from physical exercise and missing classes. presently, scientific knowledge in regard to adolescent depression remains at the descriptive level. the prevalence of depression reported for the general adolescent population currently ranges from % (clarke, ) to % (pronovost et al., ). there is no consensus as to the clinical frequency of adolescent depression (siegel & griffin, ). it is generally agreed that the primary etiology of adolescent depression may be either endogenous or reactive (greydanus, ; maclean, ; simeon, ) with a greater proportion being of the reactive nature than in the comparable adult population (kramer & feiguine, ; puig-antich et al., ; simeon, ). just as there have been conflicting findings about the prevalence of adolescent depression, so too have there been significant discrepancies regarding the demographic characteristics of depressed youth. baron & perron ( ), mcdermott et al. ( ), reinherz et al. ( ), simeon ( ) and weissman et al. ( ) have demonstrated significantly increased rates of depression among adolescent females over males. however, in a similarly designed study, using the same or a comparable diagnostic tool, siegel & griffin ( ) failed to demonstrate any gender differences. baron & perron ( ) examined the family setting and demonstrated no significant difference in level of depression and marital status of biological parents, type of family structure, employment of parents, and presence of siblings. utilizing the same instrument and level of significance, siegel & griffin ( ) found a significantly higher level of depression among children of divorced parents. as baron and perron's ( ) study involved a sample from western quebec, canada and siegel and griffin's ( ) study was composed of a sample from missouri, u.s.a., this variation may be due to the differing value each population places on the traditional nuclear family. weissman et al. ( ) and simeon ( ) demonstrated an increased prevalence of depression among children and adolescents whose parents were depressed as compared to those who had non-depressed parents. age and socioeconomic status have been found to be positively correlated with depression in some studies (greydanus, ; siegel & griffin, ) and negatively correlated in others (baron & perron, ; reinherz et al., ). cultural and other demographic differences have been found to exist among urban and rural adolescents who were suicidal (tonkin, ). no studies have isolated similar factors among adolescents experiencing depression. pets and health in humans similar to the research related to adolescent depression, the literature on pets and human health has increased greatly in the past several years. an annotated bibliography of the human-animal bond lists citations prior to (allen, ), and another lists citations between and (rowan, a). in , anthrozoos commenced publication as a multidisciplinary refereed journal concerned with the interaction of people, animals, and environment. this publication was joined in by society and animals, a similar refereed journal committed to the scientific study of human and animal interactions. a number of international organizations are devoted to the study of human and animal interactions. thirteen of these came together under the international association of human-animal interaction organization (i.a.h.a. . .) for a conference in in montreal, canada. there are several levels of rigor and complexity in publications regarding human and animal interactions in a shared environment. at the most basic level, articles in the media and lay literature extoll the benefits of pets for one's mental health in decreasing feelings of loneliness and depression and increasing feelings of love and belongingness (cohen, ; humeston, ; jaworski, ; meer, ; schultz, ; toufexis, ; wyatt, ). these articles have little scientific merit in most cases but may provide the impetus for empirical examination of popularly held beliefs. the next level of literature includes anecdotal case reports which are generally found in non-research-based journals of nursing or other health professions. it is in this forum that "helpful hints" for improving patient care are passed from one professional to another. such references, like the lay literature, frequently cite the profoundly positive effects pets have had on the subjective measurements of happiness and social behavior of various groups of individuals requiring nursing care (bibby & posterski, ; bikales, ; blythe, ; bossard, ; brickel, , ; carbary, ; davis, a, b; davis, ; dolan, ; fogel, ; francis, , ; furstenberg, rhodes, & powell, ; gammonley & yates, ; haggard, ; lago & knight, ; manor, ; manor, mccurdy, & crain, ; mayhew, ; preshlock, ; ruckert, ; twiname, ; wille, ). one well-known piece of anecdotal pet literature in nursing came from florence nightingale who recognized the effect that the pet owl she carried in her pocket had on her patients. she wrote, "a small pet is often an excellent companion for the sick..." (nightingale, / , p. ). like the popular lay literature, attention is best paid to these sources for their inquiry into observed clinical effects. it is from such sources that the nurse researcher may begin to plan a course of study to actively test some of the "hunches" held by practicing colleagues. the remaining research-based literature on the use of animals in the health promotion of humans has been split into three distinct groups. the first category is that examining the use of "helping animals" for the physically disabled. however, this study examines the relationship of pets with mental health. therefore, unless the emotional benefits of such a relationship are also studied, this body of literature is not addressed in the context of this review. the second category of pet research literature does measure the emotional or mental effects of pets on humans in pet therapy, or pet-facilitated therapy. this involves the use of an "outside" animal (which is usually the therapist's but is almost always unfamiliar to the client) in therapeutic interactions between a client and a health professional (corson, ; draper, gerber, & layng, ; hundley, ; levinson, , ; wolfe, ). the use of animal visitation programs with hospitalized or institutionalized individuals is considered under the category of pet therapy as it involves the use of an "unknown" animal (fila, : francis, turner, & johnson, ; kale, ; kalfon, ; lebeck, ; lee, ; mead, ; moneymaker & strimple, ; muschel, ; ormerod, ; robb, boyd, & pristash, ; thompson, kennedy, & igou, ). this aspect of the literature is also not discussed in the review as it does not directly apply to the proposed study. the third category of research-based literature discusses the nature of the relationship between individuals and their own pets. this literature occasionally refers to pets as "companion animals" to highlight the fact that it refers to an animal well known to the subject, and not an external animal such as those used in pet-facilitated therapy. in fact, there has been little clarification of the terminology differences between "pet" and "companion animal" in the literature (veevers, ). in this study, the term "pets" refers to both "companion animals" and "pets" as used in the literature. a definition of pets is included in chapter one. the majority of the pet studies to date have been qualitative in design, examining the nature of pet ownership and/or interaction with a particular health parameter of a given population. like the aforementioned state of knowledge regarding adolescent depression, the current state of knowledge in the study of human health factors and pets is still in the descriptive stage. pets and physical indices of stress in humans stress, one of the possible contributors to depression (klerman & weissman, ), is frequently demonstrated by an increase in blood pressure (perko & kreigh, ). in a within-subject experimental design study, baun, bergstrom, langston, and thoma ( ) examined the effect of pets on stress. this study demonstrated that stroking a pet dog (with whom the subject had an established bond) had a significant effect in lowering both the systolic and diastolic blood pressure when compared to stroking an unfamiliar dog. the decreased blood pressure response of those subjects stroking a pet dog paralleled the relaxation response demonstrated by those asked to read quietly alone. unfortunately, there was no true control group in the latter study. a thesis completed by oetting (cited in baun, oetting and bergstrom, ) examined the physiological indices of stress reduction (blood pressure, heart rate, and peripheral skin temperature) for groups solely stroking a pet dog or stroking a dog in combination with autogenic relaxation techniques. although both groups demonstrated a decrease in stress levels as measured by the above parameters, there were no significant differences in the stress reduction indices of the two groups. the two aforementioned studies illustrate the differing findings in studies of the relationship between people and the effects of pets on certain parameters (such as the physical indicators of stress) of mental health. blood pressure was also a variable used by riddick ( ) in a pre-test, post-test, control group design that provided fish aquariums to non- institutionalized elderly. significant decreases in diastolic blood pressure, and increases in leisure satisfaction and in relaxation states were noted in the members of the experimental group. it is unclear, however, if these results were due to the actual nature of human-animal interactions or were an outcome of a new leisure hobby. allen, blascovich, tomaka and kelsey ( ) measured the physical autonomic stress responses of adult women asked to respond to mathematical skill testing questions (as a stimulus of stress) in a laboratory setting with only the researchers present. these women were then asked to repeat the exercise two weeks later at home in the company of either their best female friend (social support), their pet dog, or alone. the results were consistent across laboratory and field studies. the women with a friend present at the time of testing scored less well and demonstrated significantly increased autonomic stress responses. those women with their dog present at the time of testing demonstrated significantly less physiological reactivity on all autonomic stress measurements. the marked difference between support provided by friends and that of pets was interpreted by the researchers as a result of the non- evaluative nature of pets as they relate to humans (allen et al., ). another study of physiological indices of relaxation and stress reduction in regard to the presence of animals is that of friedmann, katcher, lynch and thomas ( ). these researchers followed patients post-discharge from a coronary care unit. findings demonstrated a significant positive relationship between the presence of household pets and a one-year survival rate. to control for the physical requirements (and hence possible adherence to recommended exercise regimes) necessary in caring for a dog, all dog owners were then omitted. the findings of the second analysis also demonstrated a significant relationship between the presence of non-dog household pets and the one-year survival rate post-discharge from the coronary care unit. these findings were consistent across age, gender, severity of illness, marital status, and personality traits of the subjects. such findings again suggest the notable effect household pets have on the health of their human companions. in a study examining the risk factors related to stress and cardiovascular disease, anderson, reid, and jennings ( ) studied , individuals attending a free clinic in melbourne, australia. two matched groups were established according to age and sex. potentially confounding variables of diet, exercise, weight, socioeconomic status, alcohol intake, and smoking habits appeared to be equally distributed throughout both the pet owning and non-pet owning groups of all ages and genders. all the male pet owners demonstrated significantly lower plasma triglyceride levels, lower plasma cholesterol levels, and lower systolic blood pressure than did their non-pet owning counterparts. the female pet owners in the to age group demonstrated significantly lower plasma triglyceride levels and lower systolic blood pressures than did non-pet owners in the same group. for all groups, the differences were independent of the type of pet owned. this is one of the first studies demonstrating a direct correlation between pet ownership and physiological indices of stress related to specific disease prevention. serpell ( , ) carried out a ten-month prospective study which examined changes in health status and behaviour in adult subjects following the acquisition of a new pet (dog or cat). the pet owning groups reported a significant reduction in minor health problems in the first month following pet acquisition as compared to a control group of non-pet owners. for dog owners, the health status improvement was sustained for the entire ten-month study period. similarly, new pet owners also demonstrated a significant improvement in psychological well-being over the first six months. for dog owners, this included an increased sense of self-esteem which was sustained for the entire ten month study period. serpell's ( , ) findings suggest that acquisition of a pet may have a causal influence on overall human physical and psychological health and in some cases these effects may be relatively long lasting. pets and emotional health in humans the research literature regarding the relationship between pet ownership and the emotional well-being of the owners has been studied in a variety of ways on a vast number of populations. carmack ( ) studied the lived experience of individuals with acquired immunodeficiency syndrome (aids) and the role of a pet in their lives. identified themes that persons with aids attributed to the presence of their pets included an increased feeling of affection, feeling valued and needed, an ability to have a confidant, a catalyst for facilitating discussion of difficult topics, an increased ability to focus on the present, a feeling of consistent support, and an increased ability to handle anger, as well as a decreased perception of loneliness and stress. it becomes apparent that the value which persons with aids placed on the presence of pets may, in fact, also be present among pet owners without aids. according to folkman and lazarus's ( ) model, several of these attributes could be included with the presence of pets as part of the coping response of an individual experiencing depression. the use of pets (with the identified attributes cited by carmack, ) may enable individuals experiencing depression to reappraise that emotion into one of an alternate and perhaps more manageable nature. blenner ( ) interviewed infertile couples in a qualitative study to determine the effects of pets on this population. she concluded that using pets as therapeutic adjuncts greatly helped to break the cycle of depression, withdrawal, and stress or isolation in infertile patients' lives. the effects of pets on depressed individuals has been examined by mcculloch ( ) who surveyed individuals (ages to ) with a variety of chronic physical health concerns and concurrent depression in order to determine the role of their pets during the course of their physical illness. the majority ( %) of the subjects indicated that their pets were an important source of companionship, as well as a valuable force in helping them cope with feelings of loneliness ( %). a larger majority ( %) of mcculloch's ( ) sample stressed the importance of the pet in encouraging a sense of humour. even among those in the sample who demonstrated social stability and satisfactory support systems, pets were perceived to provide invaluable additional coping resources to help the individuals deal with their physical illness as well as the concurrent depression (mcculloch, ). mugford and m'comisky ( ) utilized a pre-test, post-test, control group experimental study design in which a sample of well elderly who were living alone were given either begonias, caged birds, or nothing. the results demonstrated significant improvement in self-concept and attitude toward others for the group who received the birds for the five-month test period over those who received the plants or no item. in contrast, a more recent study by robb and stegman ( ) found no significant difference in measures of morale, locus of control, social interaction, and mental status among predetermined groups of pet owning and non-pet owning veteran clients receiving home care services. utilizing instruments with established reliability and validity, this study was one of the few to have quantitatively measured the findings frequently cited in anecdotal reports. robb and stegman ( ) recommended that further quantitative studies of factors in human-animal interactions be carried out utilizing established instruments. in addition, the researchers recommended that critical attention be paid to situational and personal characteristics of the subjects. baun, cardiello, and jassen ( ) utilized a pre-test, post-test control group design in the measurement of depression, loneliness, and morale of older adults transferred to a rehabilitation unit. their study demonstrated a significant decrease in depression among those individuals transferred to the rehabilitation unit with a pet bird over those in the control group who were not given a bird. the presence of a bird, however, made no significant difference in the morale or loneliness of the subjects. in a study of single seniors in their homes, lane and de gale ( ) measured self-perceptions of health, finances and living situations as well as indices of depression, loneliness, and life satisfaction among pet owners and non-pet owners. overall, pet owners viewed their health, finances, and living accommodations as significantly better than did the non-pet owners sampled. objectively, there was a statistically significant difference between the two groups only on the life satisfaction scale (pet owners scored higher). unlike the previously cited study of baun et al. ( ), lane and de gale ( ) found that the depression and loneliness indices of their two study groups were indistinguishable. in another study of perceived health status among the elderly, siegel ( ) reported on a one-year prospective study of individuals. when all demographic characteristics were controlled for (including social support network and chronic health problems), those with pets reported fewer physician contacts during the year than did those without pets. the accumulation of stressful events during the year was no different between the two groups; however, the events resulted in more physician contacts by the non-pet owners than by the pet owners. dog owners, in particular, did not utilize their physician in times of stress. they reported that their pets provided them with companionship ( %), security ( %), and love ( %). it is hypothesized by the author that those without dogs or other pets may be using their family physician to fill this companionship role in times of stressful life occurrences (siegel, ). a descriptive study (cookman, ) using grounded theory methodology to study attachment of a similar population of pet owners demonstrated that elderly pet owners used their animals to fill a perceived void in companionship, thereby confirming siegel's ( ) results. stallones, marx, garrity and johnson ( ) also studied use of health care services among pet and non-pet owners. they surveyed , adults (ages to ) from the general population in the united states to determine the relationship between pet ownership and pet attachment with self-reported illness behaviour and depression. their telephone survey used numbers of visits to the doctor, use of prescription medication, and numbers of hospitalizations to measure illness-related behaviours. the respondents were also questioned as to their self-perception of health, recent negative life events, support network and perceived attachment to their pets. the data analysis revealed no significant difference between pet owners and non-pet owners on comparisons of illness behaviour, depression, life changes and support network. the results also demonstrated a significant inverse relationship between attachment to pets and presence of a human support network. the absence of a human support network was associated with emotional well-being. on the basis of this study, stallones et al. ( ) caution against advocating pet ownership for depressed individuals as it may lead to a decrease of human supports and provide yet "another stressor ... to increase rather than decrease emotional distress" (p. ). a review of the etiology of depression in adults and the use of a conceptual framework for the placement of pets in relation to the health parameters may have further assisted stallones et al. ( ) in drawing conclusions from the latter finding. the interrelationship between human-pet attachments and subsequent human-human interactions has been another subset of research into the emotional well-being of pet owners. in one of the original studies in this area, brown, shaw, & kirkland ( ) reported a positive correlation between human affection for dogs and affection for humans. in opposition to this view, another of the original pet researchers determined that pet owners and men in general like people less than do non-pet owners and women in general (cameron, ). they conclude that pets seem to function as a deterrent to effective social relationships and, consequently, to mental health (cameron & mattson, ). given the nature of their sampling procedures and correlational analysis, cameron and mattson ( ) may be presumptuous in their statement of causation. more recently, the effect of human-pet relations on human-human relations has been tested using a variety of study designs. robins, sanders, and cahill ( ) used a participant observation research design to demonstrate that dogs facilitate interactions with strangers in a park setting and help to establish trust among the newly acquainted. messant ( ) had volunteer dog walkers, and control group walkers (no dog) observed with behavioural measurements of the frequency and nature of interactions with other humans. he concluded that the presence of the animal acted as a "social lubricant" (similar to the findings of mugford and m'comisky, ). the presence of a dog increased the likelihood of interactions with other people. these others usually spoke to or touched the dog while also addressing its owner. such an observation reinforces the significance of the pet in the interaction in comparison to those walkers who did not have a dog present. rossbach and wilson ( ) built on the previous research in their study in which subjects were asked to rate a series of photographs on dimensions of approachability, happiness, relaxation, and "best" photo. the photographs consisted of the same four individuals in combinations of seated and standing positions, alone, with flowers, with their own dog, and with a strange dog. in all cases, pictures which had dogs in them were rated higher than all other photographs. in the second stage of the study, subjects were asked to rate slides of scenery, an individual alone in the scene, and the same individual with a dog in the scene. the findings demonstrated a preference for scenery alone on ratings of aesthetics, happiness, relaxation, safety, and "best" picture. second to the images of scenery alone, were the scenes with an individual and a dog. it was only when the subjects were asked to place themselves in the photo, that the preference on all scales became the slide with the dog. rossbach and wilson ( ) interpreted these results to indicate that their subjects would rather be with a dog than alone (companionship) and that an individual with a dog is more appealing than one without (perhaps as a social lubricant). paul and serpell ( a) surveyed university students regarding their childhood relations with pets and current attitudes towards animals and humans. their results demonstrated a significant positive relationship between involvement with pets as children and both positive attitudes to animals in general, and higher scores on a scale of empathy for other humans. this confirms an earlier study of childhood pet ownership by poresky ( ) who demonstrated that empathy towards children by other children was correlated with empathy towards pets. children with a strong attachment bond to a pet had higher scores on empathy towards other children than did the children in the study who did not have pets (poresky, ). this finding conflicts with those of stallones et al. ( ) who concluded that pet attachment among adults was negatively correlated to attachment with humans. gage ( ) studied couples with a baby of one year or less. after controlling for factors of the parental childhood experience, and level of socialization for marital and parental roles, the findings demonstrated a significant correlation between the extent of pet experience and competence in marital and parental roles using established scales for self-esteem, life satisfaction, marital satisfaction, and parenting competence. similar to the aforementioned studies, gage ( ) demonstrates the effects relations with pets may effect other relations with humans. in regard to pets and the adolescent population, covert, whiren, keith, and nelson ( ) interviewed urban and rural adolescents from to years old about the nature of their relationship with their pets. results indicated that % of those surveyed had cared for an animal. the benefits of pet ownership among those surveyed was found to be significant on the parameters of reported friendship (dog, fish, bird, and horse owners only), expanded knowledge (fish, and bird owners only), and acknowledged responsibility (small mammal and horse owners only). in a study similar to that of covert et al. ( ), stevens ( ) surveyed urban and rural grade eight adolescents. the investigator determined on the basis of the survey that urban adolescents were significantly more attached to their pets than were their rural counterparts. there were no significant differences in the level of pet attachment among male or female adolescents or between dog or cat owning individuals. the study confirmed the more utilitarian role animals play in rural families as well as the lack of gender bias or species preference in the pet attachment of urban adolescents. much of the remaining literature concerning adolescents and pets, groups adolescents together with children in an analysis of developmental task achievement. davis and juhasz ( ) discuss the formation of a concept of "self" to be an important developmental task of the preadolescent. pets may contribute to adolescent confidence and sense of self by a facilitation of healthy expression of feelings through play, a non-authoritarian nature, consistent availability, maintenance of "confidences," and unconditional acceptance. they indicate that the pet's involvement as a developmental asset will fluctuate over time and according to the individual needs of the adolescent and caution that "a rigid relationship indicates limitations in growth potential relative to developmental progress" (p. ). schaufl and bergler ( ) found that among the nine to fourteen year olds they surveyed, dogs took on several roles and functions for their subjects. namely, the pets represented fantasy, friendship, entertainment, facilitators of communication, topics of conversation, comforters, "nurses", and catalysts for family togetherness. in addition, there are literature reviews and philosophical constructs discussing the roles played by pets in families with children. albert and bulcroft ( ) interviewed pet owners and non-pet owners to determine the degree of attachment of pets have to the family system. their findings suggest that pets are viewed as family members who play significant emotional and psychological roles in urban households. the nature of the role the pet holds in the family system varies over the life cycle and type of family. cain ( ) identified both positive and negative aspects of pet ownership dependent on the life stage and the dynamics in individual families. the pets in the households with adolescents frequently served as a confidant for the adolescent as well as teaching attributes of independence and responsibility and providing a source of companionship (albert & bulcroft, ; schaufl & bergler, ). robin and ten bensel ( ) studied the role played by pets in the developmental tasks of the adolescent: pets function, particularly for adolescents, as transitional objects, much like the blanket or the teddy bear does for infants. as transitional objects, pets help children feel safe without the presence of parents. pets are more socially acceptable as transitional objects for older children than are inanimate objects. adolescence brings with it a changing relationship to pets....at this period pets can be a confidant, an object of love, a protector, a social facilitator, or a status symbol (p. ). the literature further indicates that, due to the intense relationship that adolescents, (more so than elementary school children) have with their pets (kidd & kidd, a, b), it is members of this age group that generally have the most profound and prolonged periods of grief in the event of loss of a pet (robin & ten bensel, ). in summary, a vast array of lay and anecdotal literature describes the mental health benefits of pets for their owners. the research-based literature is as yet unclear as to the exact nature of the benefits of pets to humans. consistent with the findings of baun et al. ( ), friedmann et al. ( ), and robb and stegman ( ), there appears to be a paucity of controlled quantitative investigations of particular health parameters in humans in relation to the presence of household pets. the relationship between measurement of depression and pet ownership also appears to vary according to the age and circumstances of the subjects. in general, the research literature confirms that animals are able to facilitate human-human contact. pets in childhood are instrumental in fostering feelings of empathy towards other humans in adulthood. however, as previously noted, despite the descriptions of the role pets may play in the developmental tasks of adolescents, there is little in the research literature regarding the relationship of pets to the current mental health of adolescents. summary in this chapter an overview of the relevant literature pertaining to the concepts of adolescent depression and the health benefits of pets has been presented. the research literature regarding adolescent depression addresses the demographic correlates of depressed youth as well as the potential etiologic basis and behavioural representations. there is evidence in the literature that adolescent depression is related to suicide, delinquency, dropping out of school, poor academic performance and substance abuse (rogers, ). it is also clear from the literature that there are recognized differences in adolescent depression between urban and rural populations and among different cultural groups. the points on which the literature is not clear relate to important aspects such as overall prevalence in the population, as well as any demographic correlations of depression with gender, family structure, age, and socioeconomic status. the presence of household pets has not previously been identified as a factor in dealing with this health concern among adolescents. literature regarding the health benefits of pets ranges from lay anecdotal articles to reports based on rigorous experimental design. the areas pertinent to the concept of mental health include the relationship of pets to stress responses, as well as measures of emotional well-being. the literature describes recognized differences in the role played by pets for people living in urban and rural settings. the research literature also confirms that pets provide increased feelings of love, belongingness, and companionship for their owners. despite the wealth of anecdotal articles promoting other emotional health benefits of pets, the findings of the research-based literature are conflicting as to whether pets are, in fact, correlated with a change in blood pressure, heart rate, loneliness, depression, affection for other people, morale, locus of control, and social interactiveness when examining groups of pet and non-pet owners. although findings have indicated that adolescents are one of the age groups most affected by the death of a pet, and rate as much more attached to their pets than do younger children, there have been few studies regarding the relationship between mental health of adolescents and the presence of pets. for these reasons, this study helps to fill the void noted in the review of the literature. the study addresses the need for further clarification of the prevalence and demographics of depression a selected group of adolescents. the study also builds on the foundation knowledge in examining the correlation between this specific mental health concern and the presence of pets among members of the population. the study adds to knowledge about both the emotional health of urban grade nine adolescents and the potential correlation of emotional health with the environmental influence of household pets. chapter three methods a multi-method quantitative design was used to address all four research questions. the first question relating to the prevalence of depression among the subjects was addressed using a descriptive survey design. the second, third, and fourth questions concerning the relationships between pets, gender, and depression, as well as primary ownership of pets and depression, and perceived pet attachment and depression, were addressed by correlational study designs. instruments the instruments utilized in the study were the adolescent and pet characteristics questionnaire (see appendix a) and the center for epidemiologic studies depression scale (ces-d) (see appendix b). adolescent and pet characteristics questionnaire the adolescent and pet characteristics questionnaire is an instrument designed by the researcher to collect nominal level, descriptive demographic data about the subjects (see appendix a). the following criteria were utilized for item inclusion on the questionnaire: . each independent variable was identified in the literature as significant or potentially significant (content validity); . the inclusion of each variable appeared logically relevant in relation to the research questions and purpose of the study (face validity). the questionnaire was submitted to a convenience group of male and female adolescents (aged to ) to assess for comprehensiveness, clarity, and face validity prior to its use. no changes to the instrument were made on the basis of this preliminary assessment. the questionnaire includes fourteen items related to gender, age, school performance, current family members at home, immigration (of the subjects as well as their parents), language, and presence of pets in the home. for those subjects who have pets, a further seven items (for which short responses are necessary) gather additional information as to type and number of pets, identified favorite pet, primary ownership, duration of ownership, and perceived degree of attachment to the pet. subjects complete the instrument by circling the nominal category or briefly describing that which best portrays their current situation. center for epidemiologic studies depression scale the center for epidemiologic studies depression scale (ces-d) (radloff, ) was used to measure the prevalence of depression among the subjects (see appendix b). unlike measures used in other studies (beck, ward, mendelson, mock & erbaugh, ; siegel & griffin, ), the ces-d was designed to measure depressive symptoms in the general population as opposed to the clinical case and is, therefore, particularly pertinent to the subjects in the study. the ces-d consists of summated likert-type statements on a unidimensional measurement of depression. the depression factors include measurement of depressed affect, positive affect, somatic concerns, slowed activity, and interpersonal relations. the subjects circle the response which best describes how frequently each statement pertained to them during the past week. there are four potential responses to each statement ranging from to , with indicating "rarely or none of the time" and indicating "most or all of the time" (radloff, ). the subjects' circled responses are totalled to obtain an overall score for the scale, which may range from to . the ces-d scoring for adult populations uses a cut-off value of > to indicate the presence of depression symptoms (radloff, ). several authors have indicated, however, that this is not an adequate indicator for an adolescent population and scores of > (pronovost et al., ), > (ackerson, dick, manson, & baron, ) or > (clarke, ; manson, ackerson, dick, baron & fleming, in press) are better indicators of specific depression-related symptoms in adolescents. indeed, those adolescent studies which have utilized the adult cut-off point of > for depression have demonstrated prevalence rates of depression such as % and % of the population (mcdermott et al., ). these rates are in excess of the adolescent depression prevalence rates reported in studies using alternate measurement instruments (greydanus, ; simeon, ). for the purposes of this study, no distinct cut-off point was utilized. rather, a series of four scoring categories, based on the cut-off points utilized by the above researchers and the principle of interval data, was used to indicate various degrees of depressive symptoms. an overall score on the ces-d from to indicated no depression, a score from to indicated mild depression, a score from to indicated moderate depression, and a score from to indicated severe depression. the ces-d was designed for use with english-speaking, caucasian or african-american populations of both genders, a wide range of socioeconomic statuses, and education levels and is freely available for public use. although originally designed to measure depression in an adult population, it has demonstrated high concurrent validity (r = . ) and excellent internal consistency ( . for suicidal youth, and . for non-suicidal youth) among adolescent populations in both canada and the united states (clarke, ; pronovost, ; roberts, andrews, lewinsohn & hopps, ). the exact reading comprehension level is not known; however the instrument was designed for use with "less than high school" (radloff, , p. ) levels of education. adolescent subjects complete the instrument in an average of five minutes. factor analysis of the internal sub-scales of the instrument revealed a high interrelatedness that cautions against separating out any internal measures of depressed affect, positive affect, somatic retardation, and interpersonal factors. rather, radloff ( ) recommends using the tool only as a whole. the ces-d also has strong discriminant validity when compared to a series of other similar scales (radloff, ). protection of human rights approval of procedures for the protection of human rights was obtained from the university of british columbia behavioural sciences screening committee for research and other studies involving human subjects prior to commencing the study. throughout the study, every effort was made to maintain anonymity of the subjects. despite the fact that the students and teachers were aware of who participated in the survey and who did not, no names were accepted on the completed instruments. the instruments were collected in an envelope without any observation of results by the researcher or the teacher. parents of the children were informed of the study and were offered the opportunity to view the instruments if they desired prior to providing their consent. none of the parents contacted elected to do so. prior to conducting the study, the researcher, in conjunction with the school counsellor or principal, identified an individual within the school to whom the students could go for counselling if they found that the questions asked in the survey had caused them to think about problems they were experiencing. this information was verbally given to the students as a group after all the instruments were collected. although some of the responses revealed severely depressed individuals, no effort was made to seek out the identity of those individuals as this would have constituted a breach of anonymity. rather, contact was made with the principal or guidance counsellor of the three schools from which the completed instruments had been collected. each was informed that there had been responses indicating depressed students in the school. they were then provided with information about community resources in the area of the school to provide class presentations or counselling to self-identified individuals. sample all secondary schools in urban vancouver (eighteen) and victoria (eleven) were approached for participation in the study. only those in which approval was received from both the principal and the classroom teacher involved were included. these schools (three in vancouver and three in victoria) represented a variety of socioeconomic levels in the urban population (capital regional district health, ; rumel & costanzo, ; siegel & griffin, ). participation was sought from all grade nine students in the six schools. only those students who returned a signed parental consent form were included in the sample, which consisted of both males and females. the choice of grade nine students was made based on the literature which documents an increase in the incidence of depression in the to year old age group (greydanus, ) as well as an increase in suicide rate in the to year old age group (conrad, ; pronovost et al. ). individuals to years of age are at an optimal age for experiencing depression, but may not yet have dropped out of school (reinherz et al. ) or been led to suicidal acts. data collection approval for completing the study was obtained from the vancouver school board and the victoria regional district school board. the vancouver school board then approached the individual school principals to request their consent for school participation. the schools within the victoria school district were individually approached by the researcher through a letter introducing the study and requesting consent (see appendix c). the principals were then contacted by telephone to arrange a time to obtain the signed consent, answer any questions they might have, and complete the final arrangements for the study. for those principals who did not respond to the initial letter or telephone call, a faxed memo was sent requesting their participation. once the schools were identified, letters were distributed explaining to the students and their parents the nature and purpose of the study, as well as the time and effort required (see appendix d). active signed consent was requested from the parents and required prior to student participation in the study. in four of the schools, parental consent forms were sent home with the subjects and returned to class in the same manner. one school had a blanket consent on record which the parents had signed at the beginning of the school year giving their consent for voluntary participation by their child in any study approved by the school board. in the sixth school, the principal requested that the study information and consents be mailed home to the parents to avoid placing extra duties on the teaching staff. in the first four schools, the principals or classroom teachers volunteered to collect the parental consent forms from the students prior to the survey date. in the last school mentioned, the students either turned their signed consent form into the school office or brought it with them at the time that the instruments were completed. once consent was obtained from the parents and subjects, the data were collected. each school varied slightly as to the procedure which the principal preferred to have followed. one school with relatively few students gathered all of those with parental consent from their classrooms into a room at a pre- arranged time. another preferred that the students respond to the instruments during lunch time, and the four remaining schools had the instruments distributed to participating subjects during a guidance class or, in the case of one school, an english class. the researcher was able to personally distribute the questionnaires in five of the six schools. in each of these instances, the researcher introduced herself as a nurse interested in learning how teenagers currently felt about themselves and in the degree of involvement they had as individuals with pets in their homes. it was stressed that there were no right or wrong answers to the questions. the subjects were encouraged to express how they truly felt and not what they thought others might want to hear. finally, it was pointed out again to the students that there were two pages to be completed and that their names were not to be put on either form. the students were encouraged to respect each other's privacy and look only at their own paper, fold it in half when they finished, and place it in the envelope held by the researcher. in the sixth school, the guidance classes were held at a time at which it was impossible for the researcher to be present. the above directions were given to the guidance counsellor who read the introductory statement and instructions to the participating subjects in each of his nine classes. in all cases, the subjects were presented with the ces-d scale first, followed by the adolescent and pet characteristics questionnaire. data analysis data from the adolescent and pet characteristics questionnaire were tabulated as follows. the questions for which the potential responses were of a limited number were analyzed at face value as the nominal category which they represented (gender, age, school performance, number of parents, number of siblings, birth country, years in current neighbourhood, primary language, presence of pets, type of pet, primary pet ownership, duration of pet ownership, and attachment to pet). four of the short-answer questions had numerous potential responses (place in sibship order, overall numbers and types of all household pets, name of pets, and occasion for pet acquisition). the responses to these questions were categorically grouped according to common characteristics. sibship order was analyzed as eldest, youngest, and anywhere in the middle of a group of siblings. overall numbers and types of household pets were analyzed in groupings of single pet, multiple pets of same species, and multiple pets of different species. names of pets were grouped in to categories of human names, names based on physical characteristics, names based on social or behavioural characteristics, humourous names, and miscellaneous. the reason for pet acquisition responses were grouped into categories of no reason, unplanned finding, gift, planned desire, replacement of a past pet, and replacement of a past significant other. the first research question was answered with a prevalence ratio using the values from the ces-d scale (glass & hopkins, ; munro, visintainer, & page, ; radloff, ; zar, ) to delineate those respondents who were not depressed, mildly depressed, moderately depressed, and severely depressed. the second research question was analyzed using a two-way fixed effects analysis of variance (anova) design (glass & hopkins, ; munro et al., ; zar, ). in this case, the dependent variable was the interval level measurement of depression as recorded by the ces-d score. the independent variables of gender (female/male), and pets in the home (no/yes) were obtained from the adolescent and pet characteristics questionnaire. in order to use the anova statistical analysis procedure, three primary assumptions about the data must be met (glass & hopkins, ; munro et al., ; zar, ). the first anova assumption is that the dependent variable be composed of normally distributed continuous data. secondly, the sampled groups must have equal (homogeneous) variances. finally, the factor effects must be linear or additive in nature. to determine the distribution (normality) of the ces-d scores, the results were plotted graphically using a density distribution histogram and a normal curve. the results showed a positively skewed distribution with a long right-sided tail (see appendix f) (glass & hopkins, ). to utilize parametric analysis procedures with these data as they existed in their raw numerical form would be in violation of the assumption of normal distribution (glass & hopkins, ; zar, ). a logarithmic (base ) data transformation was used to correct for the positively skewed distribution of ces-d scores. the conversion equation of x'= log (x+ ) was utilized due to the presence of several " " scores in the data set and an inability to provide a log value for (zar, ). this resulted in a normal distribution (see appendix f). in addition to obtaining a normal distribution of data, logarithmic transformations ensure data linearity or additivity (zar, ). therefore, the analysis of research questions three, and four (utilizing parametric analysis of variance procedures) also used logarithmic (x+ ) transformed data. the third research question was addressed using a one-way fixed effects anova design (glass & hopkins, ; munro et al., ; zar, ). this utilized a subset of the dependent variable of depression (ces-d score) which included only those individuals who had pets in examination of combinations of independent pet ownership (individual / family / parent / sibling) as reported on the adolescent and pet characteristics questionnaire. post hoc analysis of the data was completed using the tukey test for honest significant difference as provided by systat with tukey-kramer adjustment for unequal group numbers (wilkinson, ). this adjustment is reported to provide more consistent protection against type i and type ii errors than the newman-keuls or duncan post hoc analyses (wilkinson, ). the fourth research question was also addressed using a one-way fixed effects anova design (glass & hopkins, ; munro et al., ; zar, ). once again the dependent variable was the subset of depression (ces-d) scores for those individuals with pets in examination of the relationship with perceived attachment as reported on a scale from to (not attached / somewhat attached / very attached / extremely attached) on the adolescent and pet characteristics questionnaire. post hoc analysis of the data was also completed using the tukey test for honest significant difference as provided by systat with tukey-kramer adjustment for unequal group numbers (wilkinson, ). chapter four presentation and discussion of findings response rate grade nine students of three vancouver and three victoria secondary schools were the subjects for this study. of a possible , consent forms were returned for an overall response rate of %. a response rate between % and % is expected when employing active parental consent procedures (ellickson & hawes, ). such a consent procedure has been criticized for its potential underrepresentation of ethnic minority groups, low achieving students, and "those at risk for engaging in problem behavior" (ellickson & hawes, , p. ). although it is probable that some parents did return the signed consent forms because they were unable to read english, a demographic review of the subjects' ethnic origins later in this chapter will demonstrate that such an underrepresentation was not likely the case in this study. this is likewise the same for scholastic ability. only eight of the returned consents ( . %) indicated parental refusal to grant permission for their child to participate in the study. as shown in figure , the majority of the participants came from two schools in which the teachers strongly encouraged and reminded the students to return their signed parental consent forms. of the completed instruments, were usable. two instruments were discarded; one was incomplete and the other had obviously fictitious answers. the remaining instruments were filled out in their entirety by the subjects. many were returned with elaborate explanations included in the margins to further describe the subject's circumstances to the researcher. due to the profound differences in size among sample groups, before any analysis was completed, the differences between sample sites and depression scores were analyzed to ensure homogeneity of variance (zar, ). the . % results of this preliminary one-way fixed effects anova (with log (x+ ) ces-d scores as the dependent variable and school as the independent variable) indicated a probability statistic of p = . . with statistical significance set at a < . alpha level, this result clearly indicates that there is no significant difference between the depression values among the sampled school groups. therefore, despite the selection bias of most subjects being from two schools, the analysis indicates homogeneity of variance across all sites. for the remainder of the analyses, all school values were pooled and treated as one sample (zar, ). ■ - . % ^ - . % ^ i . %^ . ^ . % ^ ^ i^i^ ^i^i a c d e f schools figure . numbers and percentages of subjects by school demographic characteristics gender the sample was composed of . % female and . % male subjects. age all subjects were in grade nine at the time of the study. their ages ranged from to , with almost % of the sample being years of age (see table ). table ages of subjects age (years) subjects (n= ) number percentage (%) . . . . school performance almost % of the subjects reported receiving either b or c grades ( see table ). these grades have been interpreted by the investigator as "high- average" or "average," respectively. the reported grades for the subjects table school performance of subjects grades subjects (n= ) number percentage (%) a . b . c . d . in this study are similar to those reported in the larger adolescent health survey in vancouver and victoria which were generally above average (mccreary, a, b). family composition subjects reported the number of parents and siblings currently living at home with them and their position in the overall sibship order of the family. the majority of subjects ( . %) reported living with two parents, while . % reported that they lived with only one parent and three subjects ( . %) lived with older siblings in lieu of their parents (see table ). during the completion of the instruments, a total of six students asked if they were to count their parent's spouse as a second parent on the instrument. the students were encouraged to do so only if they thought of that person as a parent. the percentage of two parent families is slightly larger than reported in other studies: % for canada (bibby & posterski, ); and % and % for vancouver and victoria respectively (mccreary, a, b). table parents living at home subjects (n= ) parents at home^number^percentage (%) . . . with regard to siblings living with the subject, the numbers ranged from zero to seven (see table ). the largest representative group was . % of the subjects who reported one sibling living at home with them. almost % reported being the only child in the house, while nearly % reported having two siblings at home. seventeen percent of the respondents reported or more siblings at home. table siblings living at home subjects (n= ) siblings at home number^percentage (%) . . . . . . . . the number of siblings at home does not always correlate with the overall number of siblings in the family. this is illustrated by the figures which indicate . % of the subjects as the only child living at home, while only . % of the subjects were actually the only child in the family (see table ). approximately two-thirds of the subjects reported being either the eldest or youngest child, while the remaining % reported being somewhere in the middle of the sibship order. the presence of certain family members in the home may be beneficial in that they provide additional coping resources for the adolescent in emotional reappraisals. the absence of certain family may also be beneficial by decreasing the chance of environmental encounters which result in negative emotions for the adolescent. obviously, the reverse of each situation is also plausible within the conceptual framework. table sibship position of subjects subjects (n= ) position^ number^percentage (%) eldest . middle . youngest . only child . country of origin cultural practices may be passed on to the children of immigrant parents, therefore, information regarding country of origin was gathered on both subjects and their parents. the majority of the families originated in canada with the next two largest groups being from china and hong kong. however, as shown in table , there were different countries of familial origin, placed within eight regional categories. the subjects were highly multicultural as a sample group; however, the coping conceptual framework allows for differences associated with a variety of beliefs, values and resources. cultural beliefs may influence how adolescents respond to environmental stressors and hence their establishment of coping responses (bibby & posterski, ). as table indicates, ( . %) of the subjects were born in canada or the united states. seventy-seven ( . %) were born in the orient, and ( . % in total) in a variety of places across asia, australia/new zealand, europe, latin america, or the middle east. unlike the subjects, the parents were not primarily from north america (see table ). the highest percentage of the parents were born in the orient (average . %). those born in north america were second with an average representation of . %. twenty-one percent of the subjects' parents came from a variety of the countries listed in the european region. parents of the remainder table regions and countries of origin for subjects and parents countries of subjects and all reported parents asia - non-orient asia - orient region north america latin america europe canada^( ) argentina^( ) costa rica ( ) el salvador ( ) honduras^( ) austria^( ) bulgaria^( ) croatia czech rep. r england^( ) finland^ pfrance germany^( ) greece^( ) holland^( ) hungary^( ) cambodia ( ) china^( ) hong kong ( ) japan^( ) korea^( ) brunei^( ) fiji^( ) middle east^israel^( ) u.s.a. ( ) jamaica ( ) peru ( ) venezuela ( ) ireland ( ) italy ( ) norway poland r portugal ( ) romania ( ) scotland ( ) spain ( ) wales ( ) yugoslavia ( ) denmark ( ) malaysia ( ) philippines ( ) taiwan ( ) viet nam ( ) india ( ) lebanon ( ) africa^mauritius^( ) ^ south africa ( ) australia / new zealand ^ australia^( ) ^ new zealand ( ) were born in africa, asia, australia new zealand, latin america and the middle east regions (average total of . %). thus, almost half of the subjects were first generation canadian. this is important to note as it may indicate potential areas of conflict when the values and beliefs of the family are different from those encountered by the subject when among her / his peer group (bibby & posterski, ). table subjects and parental birth regions region numbers and percentages subjects (n= )^mothers (n= )^fathers (n= ) north america ^( . %) ^( . %) ( . %) latin america ^( . %) ( . %) ( . %) europe ^( . %) ( . %) ( . %) asia - orient ^( . %) ( . %) ( . %) asia - non-orient ^( . %) ( . %) ( . %) middle east ^( . %) ( . %) ( . %) africa ( . %) ( . %) australia / new zealand ^( . %) ( . %) ( . %) primary language in addition to reporting countries of origin, the subjects indicated which language was primarily spoken at home. forty-six of the subjects ( %) indicated that more than one language was spoken at home. if they did not make clear which was the language most frequently used, the first of the languages listed was recorded as the primary language used in the home. in total, specific languages were reported by the subjects as shown in table . as were the countries of origin, the languages were categorized to facilitate presentation. only . % of the subjects reported english as the primary language spoken at home. the second most frequently spoken languages were in the oriental category with . % of the subjects reporting the use of at least one of these nine languages. the remainder of the subjects ( . %) reported speaking a variety of the remaining asian or european languages. this is a larger percentage ( . %) of non-english speaking households than indicated by a census completed in in which . % of households in vancouver were non- english speaking (child and youth at risk steering committee, ). table primary languages used at home subjects (n= ) category number^percentage^languages english ^ ^ . % ^ english asian - oriental ^ . %^cantonese ( ) korean^( ) chinese^( ) mandarin ( ) hakka^( ) taiwanese ( ) japanese ( ) vietnamese ( ) tagalog^( ) ^ . %^hindi^( ) lebanese^( ) punjabi^( ) asian -^ non-oriental european - latin-based^ ^ . %^french ^ ( ) portuguese ( ) italian ^ ( ) spanish^( ) european - non-latin-based^ . % bulgarian croatian czech finnish german ( ) greek^( ) ( ) hungarian ( ) ( ) norwegian ( ) ( ) polish^( ) ( ) a reason for the difference in these numbers could be that the figure includes all families regardless of composition, whereas this sample includes only those with a grade nine student in the home. it is also possible that multilingual families make a concerted effort to speak their native language at home so that their children who are being educated in english will retain their non-english language abilities, hence raising the statistical representation of non-english speaking households for those families with children. it may also be that many more immigrant families have settled in vancouver and victoria since the census. residence approximately % of the subjects had lived their entire life in canada (see table ). the remaining % of the subjects reported living in canada anywhere from two months to twelve years. within this population, only about % had spent their entire life in the same neighbourhood. similar to the familiar beliefs and practices found within cultural patterns, living in the same region for a long period of time may permit the adolescent to cultivate a set of coping practices which are effective in reappraising emotional circumstances. twelve percent of the subjects had been in their current neighbourhood for less than a year. the remaining % of the subjects had lived in their neighbourhoods anywhere from one to thirteen years (see table ). it should be noted that some of the subjects commented in the margins of the instrument that they had made several moves throughout their lives; however, always within the same neighbourhood. it could be assumed, therefore, that support systems and resources would remain the same for these individuals. table years of residence in canada and current neighbourhood years numbers and percentages of subjects (n= ) canada^current neighbourhood < ( . %) ^( . %) - ( . %) ( . %) - ( . %) ( . %) - ( . %) ( . %) - ( . %) ( . %) - ( . %) ( . %) in summary, the subjects in the study were generally similar to the cross- section of adolescent subjects from the same vancouver and victoria settings participating in other studies. there were slightly more female than male subjects and most were years old at the time of the study. they attended three vancouver and three victoria secondary schools and their school performance was generally in the average or high-average range. three- quarters of the subjects lived with two parents and one to three siblings. the sample was equally represented by subjects who were the oldest, youngest and middle in the sibship. half of the subjects had lived their entire lives in canada with approximately half of the group remaining in the same neighbourhood. the most remarkable characteristic of this sample was its multicultural nature, representing countries and languages. pet demographic information presence of household pets within the group of subjects, ( . %) reported having one or more pets currently in the home. the remaining . % of the sample had no pets. this is somewhat higher than the overall statistics which report the incidence of pet ownership to be approximately % of urban households in the united states and britain (beck, ; rowan, b) and approximately % of all households in canada (bibby & posterski, ). however, it is well recognized that households with children, especially between the ages of and , are more likely to have pets than those without children (endenburg, hart, & de vries, ). a description of the pet demographics follows. types of pets of the subjects with pets in the home, . % reported having several pets of the same species. examples of this are the subjects who reported having two cats or sixteen fish. one subject reported having two adult and ten baby rats. approximately % of the remaining sample reported having several pets of different species. another % of the population reported having only one pet. identified favorite pet subjects who reported having more than one animal at home were asked to answer the remainder of the questions on the adolescent and pet characteristics questionnaire with regard to their identified favorite pet. it was assumed that subjects who had only one pet answered all questions in regard to that single pet. four subjects did not answer this question; however, they did respond to other questions within the pet characteristics section so it is assumed that they had a pet in the home and merely overlooked the question. of the types of single pets identified, % were dogs, . % were cats, . % were fish, . % were small mammals, . % were reptiles or amphibians, and . % were birds (see table ). the categories of small mammal and reptile / amphibian were composed of the animals listed in table . table favorite pet categories and types pet owning subjects (n= ) category number percentage^types bird . % cat . % dog . % fish . % small mammal . % guinea pig ( ) rabbit^( ) hamster ( ) rat^( ) mice ( ) reptiles and . % iguana ( ) snake^( ) amphibians newt ( ) turtles ( ) these findings are consistent with those of other studies involving youth and pets (endenburg et al., ) but somewhat lower in dogs reported as pets than in other studies (kidd & kidd, b). this may be partially explained by the fact that the subjects in the study were urban dwellers and there is a trend towards cat ownership ( % increase in the past ten years) rather than dog ownership ( % increase in the past ten years) in urban environments (rowan, b). pet names some pet theorists suggest that the type of name given to the pet may reflect the type of role the pet owner expects the pet to assume within the household (fogel, ). the pet names provided by % of the subjects are categorized with examples in table . table pet name categories and examples pets (n= ) category number percentage examples human . includes familiar first names and surnames humourous . biccardi, cat (for a dog), moose (for a hamster), scat, soup (for a turtle), stew (for a rabbit), t- bone, yertle none . the majority of fish owners reported not naming their pet physical characteristics . bear, blackie, bubbleface, chiquita, diamond, ginger, jolie, kiwi (for a newt), pee wee, rabbit, snowball, spud, yeller social or behavioural characteristics . airwalk, buddy, cuddles, eternity, goofball, hugs, kisses, spunky, wacky, undertaker (for a snake) miscellaneous . brax, chichu, cita, csopi, eleven, mandu, marmaul, neko in this study, the use of pets as coping mediators in the emotional reappraisal of certain situations might lead one to expect that the pets would be given either human names or names reflecting emotional or behavioural traits. the name may reflect the expectation that the pet will act in an emotionally supportive manner or even as a surrogate human. in fact, almost % of the subjects reported using a human name for their pet, % described their pet by naming it with a physical characteristic, . % used a social or behavioural trait as the name of their pet, . % used obvious humour when naming their pet, . % named their pet by a word that could not be categorized usually because it reflected another language or an unusual concept, and % reported not having a name for their pet. this last group was largely composed of fish or bird owners. it is possible that the % of the pet owners who did not answer this question may not have had a name for their pet as many of them were also fish or bird owners. these names suggest that just over half the subjects may have named their pet with regard to possible emotional coping strategies. duration of pet ownership more than half of the subjects ( . %) reported having their pets for three years or less, with the largest proportion of the group ( %) having had their pets for less than one year. the remaining . % of the subjects with pets reported having their pets anywhere from four to fifteen years. the framework for the study implies that the coping mediator must be present in order to be involved in the emotional reappraisal. this is the case for the subjects in this study who currently owned pets. the study only accounts for pets presently owned by the subjects. however, there may be instances in which subjects had had a pet in the past and learned that walking the dog, for example, allowed them to cope effectively with emotional stress. the subjects may no longer have their pets; however, they may be still using the coping mechanism which originated with pet ownership. in this example, however, the original coping mediator of pet ownership has been replaced within the framework by walking. as the majority of subjects were relatively recent pet owners, these demographic data are best viewed while concurrently examining the reasons for acquiring the pets (most of which were acquired as the subjects entered adolescence). reason for acquiring pet the majority of the subjects ( . %) reported acquiring their pet for no specific reason. other subjects cited reasons behind acquiring their pet such as replacing a previous pet ( . %), as a gift ( . %), having found it ( . %), because they wanted it ( . %), and to replace a family member who died ( . %). two subjects reported getting a pet for fun and entertainment ( . %). an additional two subjects related other reasons such as "a fight between mom and dad" and "we moved." these findings indicate no specific pattern as to the reasons for acquiring the pet. it could be that this may have been part of a parental decision and that the subjects were not generally privy to the information. the fact that most of these pets were acquired as the subjects entered adolescence (and many of them may have had siblings who were already adolescents), and that many of the pets were generally given human names, may imply they were acquired to act as a non-judgemental support for the subjects going through a period characterized by change such as the loss of their childhood, or of a family member, or previous pet. the coping conceptual framework demonstrates how this support may occur through the process of emotional reappraisal with the use of a mediating variable such as the pet. primary ownership of pet as figure indicates, the majority ( . %) of subjects who responded to this question, reported that the pet was owned by the whole family. the second largest group of subjects ( . %) were the primary owners of the pets. finally, . % of the subjects reported their parents as being the primary pet owners in the family, and . % reported siblings as being the primary pet owners. of the subjects with household pets, ( %) did not respond to this question. these results were similar to those of paul and serpell ( b) who noted primary pet ownership among adolescents to be somewhat lower than family pet ownership. if the subject is to use the pet as an emotional coping mediator, this would best be accomplished if the subject has frequent contact with the pet. this is rn cn e( . % . % ^ . % . % family parents^self ^ sibling ownership figure . pet ownership most likely to occur if the pet is solely owned by the subject or if the subject is a part of family ownership of the pet. the presence of, for example, gerbils in a sibling's bedroom, would not be expected to provide the coping mediation necessary to effect emotional change unless the subject was frequently involved in interactions with these pets. as well as interaction, pet ownership involves responsibility for providing care for the animal. in addition, there is often a sense of prestige which may accompany ownership of a pet. pet attachment the subjects reported perceived degree of attachment to their pets on a five point likert-type scale from to . on this scale, a rating of was indicative of no attachment and was indicative of extreme attachment (see appendix a). only of the total subjects with household pets did not respond to this question. as indicated in figure , of the subjects who did respond, subjects ( . %) reported that they were not at all attached to their pets. from a brief . % ► ► ► . % e( z . % . % . % ► ^ ^ ^ ^ degree of attachment figure . perceived attachment to pet review of the completed instruments, the majority of these subjects were fish owners. twenty-three subjects ( . %) stated that they were only somewhat attached to their pets. forty-six subjects ( . %) rated their attachment as being at the midline point on the scale. the remaining half of the subjects reported that they were either very ( . %) or extremely ( . %) attached to their pets. in order for the pets to be used as coping mediators it may not be entirely necessary for the subjects to be attached to them. if they are attached, pets may be utilized as confidants with whom adolescents may voice concerns and explore possible solutions. if the subjects are not attached to the pets, they may still be used as emotional coping mediators. however, in this case, the pets may become focal objects for the projection or displacement of the subjects' emotions (both positive and negative) through methods such as confrontation, distancing, self-control, planful problem solving, avoidance, and positive reappraisal (pekar, ; puskar & lamb, ). in summary, the subjects with pets in their homes displayed a broad range of characteristics. those with pets were most likely to have either one pet or many different species of animals in their household. the types of pets were generally one-third dogs, one-third cats, and one-third birds, fish, reptiles, amphibians and small mammals. just under half of the subjects had human names for their pets. the remainder named their pets a variety of humourous names, names depicting physical or social/behavioural characteristics, or unknown names in their primary language. well over half of the subjects had had their pets for three years or less and most had acquired them for no particular reason. three-quarters of the subjects reported either themselves or their whole family as the primary pet owner. finally, approximately half of the subjects felt they were very or extremely attached to their pets. findings related to research questions question one : prevalence of depression the overall scores on the center for epidemiologic studies depression scale (ces-d) were used to measure the prevalence of depression in the study group. the scoring with the ces-d is directly related to the level of depressive symptoms. the scores ranged from to out of a potential points. the mean score was . , the median was . , and the standard deviation was . . there was a difference in depression scores between adolescent females (mean score . ) and males (mean score . ). of the subjects in the study, ( . %) obtained scores of or below on the ces-d. these scores were interpreted as indicating no depressive symptoms. another subjects ( . %) scored between and and were classified as being mildly depressed. a third grouping of subjects ( . %) scored between and on the ces-d. these subjects were classified as being moderately depressed. finally, subjects ( . %) scored or above on the ces-d. these individuals were classified as severely depressed, (see table ). thus, approximately half of the adolescents had some feelings of depression; however, only about % of the overall population scored above on the ces-d and could be rated as moderately or severely depressed. table categories of ces-d scores score category of symptoms number (n= ) percent (%) - no . - mild . - moderate . - severe . these findings are similar to those of previous studies which reported mean values on the ces-d for adolescents of (manson et al.), . to . (mcdermott et al., ), (pronovost et al., ), or (clarke et al., ). each of the studies utilized a different "cut-off" point to indicate the presence or absence of depressive symptoms. the study in which the same cut-off point of > was used found prevalence rates similar to those in this study (mcdermott et al., ). studies using other cut-off points demonstrated prevalence rates for depression among adolescents similar to those found in the moderately ( . %) and severely ( . %) depressed categories of this study (clarke et al., ; pronovost et al., ). the results of this study indicate that . % of the subjects could be considered to be depressed, whereas . % of the subjects clearly have some mild symptoms of depression and . % of the subjects have no depressive symptoms. in relation to the study framework, clearly % of the subjects are not coping effectively to reappraise the depressive emotions which in adolescence may be a result of numerous environmental and some biochemical sources. despite the multicultural nature of the sample, these findings are similar to those in studies of more homogeneous ethnic populations. therefore, although ethnicity was not a variable considered in this study, based on comparisons with other studies, it does not appear to be a confounding variable which may have affected the results. both genders were represented in all of the ces-d groupings. males represented a higher proportion of those scoring in the not depressed or mildly depressed categories, whereas females represented a higher proportion of those scoring in the moderately or severely depressed categories. question two: relationship between gender. pet presence and depression the results of the two-way fixed effects anova examine the relationship between gender and depression, pets and depression and the combined relationships of gender with pets and depression (see table ). with regard to the first correlational analysis, the results demonstrated a significant relationship between gender and level of depression among the subjects (p = . ). further tukey-kramer post hoc analysis reveals that the female subjects were significantly more depressed than their male counterparts (p = . ). as the ces-d instrument has established reliability and validity across both genders (radloff, ), it can be assumed that this difference in scores is truly representative of the population sampled. this gender difference has been noted by other researchers (baron & perron, ; mcdermott et al., ; reinherz, , schonert-reichl & offer, ; simeon, ; weissman et al., ). table anova summary table for gender. pets, and ces-d scores (n= ) source^sum-of-squares degrees freedom mean-square f-ratio p gender^ . . . . pets . . . . pets*gender . . . . error . . schonert-reichl & offer ( ) discuss several possible reasons why female adolescents have higher prevalence rates of depressive symptoms than do males. one reason suggested is that male adolescents tend to exhibit depression in the form of externalized behaviours such as delinquency and aggression whereas female adolescents express their disturbance in an inward fashion. hence, the ces-d tool may be inaccurate for use with male adolescents as it emphasizes low mood and low energy symptoms as indicators of depression rather than high energy and destructive behaviour. in addition, some studies indicate that females report more symptoms than do males, and also that expressing concerns is more acceptable for females than for males (schonert-reichl & offer, ). other influences which might explain the differences between prevalence and severity of female and male depression symptoms are those of gender identification and self-esteem. schonert-reichl and offer ( ) report that during puberty, females and males begin to strongly identify with the extremes of masculine and feminine stereotypes. research has demonstrated that androgyny and masculinity are linked with higher levels of self-esteem and more effective coping mechanisms (schonert-reichl & offer, ). therefore, adolescent females suddenly confronted with extreme feminine stereotypes are more likely to have lower levels of self-esteem than their male peers. in fact, among the adolescents in a recent study, vancouver and victoria females were two and four times, respectively, more likely to have low self-esteem than males, and males were almost twice as likely to have higher self-esteem than females (mccreary, a, b). physical changes during puberty have also been reported to be more distressing to females than to males (schonert-reichl & offer, ). of the vancouver and victoria adolescents surveyed, % and %, respectively, measured within an average / healthy body mass ratio (mccreary, a, b). however, females were two to three times more likely to be dissatisfied with their weight than males (mccreary, a, b). given the supporting data from other adolescent surveys in the vancouver and victoria population (mccreary a, b), it is likely that the differences in depression prevalence among the females and males in this study are a result of actual differences in the population rather than instrument selection. with regard to the second relationship of this anova correlational comparison, the analysis also revealed a significant relationship between the presence of pets in the home and lower levels of depression among the subjects (p = . ). such a result is consistent with the reports in the anecdotal reviews indicating improved emotional well-being among those children and adolescents with household pets (albert & bulcroft, ; bibby & posterski, ; covert et al., ; davis & juhasz, ; paul & serpell, a; poresky, ; robin & ten bensel, ). the relationship between the presence of household pets and lower levels of depression in adolescents found in this study is precisely the opposite of that found by stallones et al. ( ) in a population of adults responding to the same instrument. it is likely that the reason for this discrepancy is the reactive nature of depression in adolescents as compared to the endogenous nature of adult depression (simeon, ). as a result, pets in adolescent households may be viewed in the context of an emotional coping mediator as described in the conceptual framework. the third and final portion of this anova analysis indicates that there is no significant difference in the interrelatedness among gender, pets and level of depression for the sampled subjects (p = . ). males with pets scored the lowest on the ces-d instrument (indicating an absence of depressive symptoms) followed by males without pets, females with pets, and then finally females without pets. despite the non-significance of these findings, it quite plausible that males and females utilize the presence of pets as emotional mediators in different ways. question three: relationship between pet ownership and depression the third research question was answered using a sub-set of the overall ces-d scores for those individuals who had pets. the ownership variable has four distinct categories of family, parents, sibling, and self. there is a significant relationship (p = . ) between pet ownership and lower levels of depression among the subjects. post hoc tukey-kramer analyses of the findings reveal the basis for this conclusion to be in the comparison between those subjects who owned their own pet and those subjects who were part of a family ownership of the household pet. individuals who had sole ownership of the household pet were significantly more depressed than those who were part of a shared family ownership (p = . ). there was no significant difference in the depression scores for those whose household pets belonged to parents or siblings as compared to either sole ownership or family ownership. the interpretation of these results involves addressing the value systems of the adolescent population. bibby and posterski ( ) have established that "values that incite the spirit of individualism dominate what is important to young people" (p. ). the valued goals of "friendship" and "being loved" have dropped behind "freedom" in comparable canadian teen polls of and . in addition, the percentage of young people who value "working hard" has decreased from % in to % in (bibby & posterski, ). given this value system, the findings become clearer. of all those subjects with pets, those who had primary ownership of the pet were the most depressed and those with familial ownership were the least depressed. values of adolescents have changed since levinson ( ) wrote "caring for a pet provides an opportunity for the child to toughen his ego...acceptance of responsibility for the care of a pet will eventually lead to acceptance of responsibility for establishing meaningful, satisfying human relationships" (p. ). it is possible that the freedom from total responsibility for the care of the pet, yet the recognition of shared ownership of the pet within the family was the most desirable situation for the mental health of the subjects. indeed, stallones et al. ( ) caution that pet ownership may create another stressor for a depressed person rather than a facilitator to decrease emotional distress. such was the case with the subject who responded to the questions of type of pet, pet name, primary ownership, reason for acquisition, and attachment with the following, "mouses...male: hugs eternity and female: kisses obsession....me....i begged for it and it was a big mistake!̂ not attached" (subject # ). the names given to these mice imply that there may have been some behavioural expectations of affection from the mice; however, at the time of the study, these expectations were clearly not being met. this could have been a result of the responsibility involved with caring for such pets. considering the fact that the majority of subjects' pets were given recognizable human names, part of their role could be interpreted to be a "family member" which is common for pets in urban settings (albert & bulcroft, ; fogel, ). as a "family member" with joint ownership by all members of the family, the pet in this circumstance is in a pivotal position to act as a vector for intrafamilial communication (albert & bulcroft, ; schaufl & bergler, ), and as a buffer or recipient of emotions (cain, ). pets that are jointly owned can represent a shared family interest (paul & serpell, b; schaufl & bergler, ), thereby allowing adolescents to have the security of the family unit without being tied to the family as they strive for independence. as indicated by robin and ten bensel ( ), the pet is the ideal transitional object for the adolescent. these findings indicate the inappropriateness of implying that obtaining pets for depressed adolescents may help to "cheer them up," as the adolescents in this study who owned their own pet were the most depressed among those with household pets. rather, the usefulness of obtaining a pet for the family when one of its adolescents is depressed may be worthy of consideration. it should be noted, however, that several authors caution against suggesting pets to severely disturbed families, as the pet may be harmed or threatened as an abusive strategy directed at the child (levinson, ; robin, ; robin, ten bensel, quigley, & anderson, ). although having pets in the home is more highly correlated with an absence of depression than not having pets, the least favoured situation regarding adolescent depression appears to be for the adolescent to own the pet. question four: relationship between pet attachment and depression the final research question was also answered using a sub-set of the overall ces-d scores for the individuals who had pets. this variable has five distinct categories of not attached, somewhat attached, attached, very attached, and extremely attached. the analysis indicates that depression levels are lower with increased perceived attachment to the household pet; however, the relationship is not statistically significant. this finding is difficult to interpret. first, one must assume that the report of the subjects' perceived level of attachment (on a liken- type scale from to ) adequately represents their actual perception of attachment. it is important to note that this report does not attempt to represent actual attachment as it is recognized in the literature as being a highly complex concept (johnson, garrity & stallones, ; stallones et al., ; zasloff, ). the absence of any significant difference between those who reported being extremely attached to their pets and those who reported not being attached to their pets has provided an alternate view of the concept of attachment to that reported by other researchers (friedmann, ; melson & taylor, ; michaels, ). the results receive support from the work of albert and bulcroft ( ) who report, "pet ownership is particularly high among families with grammar-school-age and teenage children. yet, attachment to pets is relatively low during this period." (p. ). kidd and kidd ( b) report that high school students indicate greater love for their pets than do elementary school students. however, the constructs of love and attachment can be only loosely compared. similar to the results of this study, zasloff ( ) determined no difference in degree of loneliness in owners according to attachment to pets. these findings could be indicative of the mediating role which pets may provide in families with adolescents. it may be possible that adolescents receive emotional support from sources outside the family system (bibby & posterski, ) and, therefore, the household pet is used to meet intrafamilial communication needs rather than individual emotional needs. in the context of the conceptual framework, it is possible that the pet may serve as a coping mediator for emotional reappraisal through processes such as emotional projection, and displacement. the adolescent could utilize the pet (which, for example, s/he may hate to walk or groom) as an outlet for frustration and anger s/he may have for authority figures and/or peers. by expressing negative emotions through the pet, the adolescent avoids internalizing these feelings as well as any potential social consequences should s/he express these feelings to the source of the conflict. these mechanisms of pet utilization would coincide with the adolescent coping methods of confrontation, avoidance, distancing, and self-control discussed by puskar and lamb ( ). subject # who was cited earlier as not being attached to the mice she begged to acquire, obtained a ces- d score of (no depression). it is important to note that correlation does not imply causation and these results could simply be due to the fact that non- depressed individuals tend to acquire pets and whether they are attached to those pets is irrelevant. summary the sample in this study was equally divided between males and females, multicultural in nature, generally born in canada, and was living at home with two parents and some siblings. the subjects were either average or high-average in their scholastic abilities. pet owners and non-pet owners were equally represented in the sample. female subjects were more depressed than males, and non-pet owners were more depressed than pet owners. subjects who owned their own pet were more depressed than those in homes where the pet was owned by the entire family. in addition, there was no relationship between perceived attachment to the pet and level of depression among the subjects. this suggests that the manner in which the subjects used their pets as emotional coping mediators occurred in the context of complex family dynamics and may not necessarily have reflected a supportive bond or attachment between adolescent and pet. chapter five summary, conclusions, and implications for nursing summary the purpose of this study was to describe the prevalence of depression among a group of adolescents and to examine the relationships between depression and presence of pets in the home, primary ownership of pets and perceived degree of attachment to the pets by the subjects. subjects were grade nine males and females attending three vancouver and three victoria secondary schools over the period from october through january . the instruments utilized to gather the data where the center for epidemiologic studies depression scale (ces-d) (radloff, ) and the adolescent and pet characteristics questionnaire, developed by the researcher. the subjects completed the instruments anonymously in classroom settings. the data were transformed using logarithmic (x+ ) data transformation techniques to ensure normality and linearity. the transformed data were analyzed using the systat . computer programming for two-way and one-way fixed effects analysis of variance (anova) and subsequent tukey-kramer post hoc analysis of pairwise comparisons as necessary. the majority of the subjects surveyed were fourteen years old, had average or high-average school performance, and generally lived at home with two parents and one to three siblings. the sample was definitely multicultural in its representation. most of the subjects were born in canada; however, approximately two-thirds of the subjects reported having parents who were not born in canada. indeed, the sampled group included families which originated in forty-six different countries. only half of the subjects reported english as the primary language used at home. twenty-seven different languages were reported to be used by the survey subjects. just over half of the subjects had household pets at the time of the survey. approximately two-thirds of those having household pets reported owning dogs or cats, with the remaining third of the subjects owning a variety of birds, fish, reptiles, amphibians and small mammals. approximately half of the subjects had human names for their pets and had had their pets for only three years or less. most of the subjects acquired their pets for no particular reason. three- quarters of the subjects reported either themselves or their whole family as the primary pet owners. finally, approximately half of the subjects felt they were very or extremely attached to their pets. of the vancouver and victoria grade nine students sampled, . % demonstrated no depressive symptoms, . % demonstrated what were classified as mild symptoms of depression, . % demonstrated moderate symptoms of depression, and . % of those sampled indicated severe depressive symptoms. findings indicated that female adolescents were significantly more depressed than their male counterparts (p = . ) with mean scores of . and . , respectively. the findings also revealed that those subjects with pets in the home were significantly less depressed than their counterparts without household pets (p = . ). there was no significant relationship between gender and pet ownership combined with level of depression (p = . ). an analysis of primary pet ownership indicated that subjects who owned their own pets were significantly more depressed on a whole than those in homes where the pet was owned by the entire family (p = . ). perceived degree of attachment to the household pet showed no relationship with depression (p = . ). conclusions the results of this study indicate the following five conclusions. the grade nine adolescents in this study demonstrated depression prevalence rates comparable to those of other canadian adolescents. symptoms of depression were much higher among female subjects than among males. the presence of pets in the household was directly related to decreased prevalence of depression. the strongest relationship between household pets and absence of adolescent depression appears to occur when the pet is owned and cared for by the entire family. the conceptual coping framework as proposed by folkman and lazarus ( ) was useful in demonstrating the process by which the presence of pets may influence the outcome measurement of depression in this sample of adolescents. implications for nursing the canadian nurses association ( ) has officially recognized that there is a lack of information and resources for mental health promotion and illness prevention particularly regarding conditions encountered in adolescence. the association's ( ) recommendations for reform include amongst others to: a) encourage research on the value of natural support networks and self-help programs in caring for persons with emotional or mental health problems; b) develop proposals for the implementation of prevention programs; c) encourage research to identify risk factors and groups at risk by virtue of either psychosocial or biological events; d) support policies and programs that enable infants, children, and adolescents to accomplish normal developmental tasks; e) support programs that strengthen the ability of individuals, families, and communities to cope or successfully negotiate situational stress throughout the human life cycle (p. - ). these recommendations are consistent with the direction provided by health and welfare canada ( ) which emphasizes a commitment to generating new interdisciplinary knowledge in the search for mental illness prevention and mental health promotion practices in enhancing people's capacity to cope with stress. as demonstrated in this study, the concept of human and pet interaction has a positive relationship to the emotional health of urban adolescents. the incorporation of pets as an environmental influence in the coping practices and health behaviours of individuals and families has implications for both nursing practice and research. nursing practice florence nightingale ( / ) noted the positive effects of a pet owl on the health of those for whom she was providing nursing care. as indicated in the literature review for this study, nurses have utilized a variety of different practice routes to include pets in the provision of health care. most nursing models contain the components of person, health, environment, and nurse in their configuration (reihl & roy, ). in most totality systems models for nursing, the pet assumes the position of an external system, stimulus, therapy, resource, or force within the model (mcmahon, ). for those utilizing a person-environment simultaneity paradigm such as that of rogers (reihl & roy, ), the pet would be viewed as "a part of the sphere of health generating energies, forces, and stressors...as a vital, often symbiotic or energizing component of the individual's state of being" (mcmahon, ). regardless of where the pet is viewed in the system, there exist no models for nursing that do not have a place for the inclusion of pets and their potential influence in promoting the health of individuals. in a country where more than % of the homes with children also have household pets, the inclusion of pet relationships in the assessment of the emotional health of adolescents should occur at all phases of the nursing process. in order to complete a comprehensive view of the biological, psychological, social and spiritual aspects of any individual or family system, an acknowledgement of the potential influence of household pets should be included when assessing coping behaviours, supports, and forces. this study has demonstrated that almost % of the adolescents surveyed had symptoms of moderate or severe depression, and that the presence of pets in the household is related to decreased prevalence of depression. this finding alone should encourage nurses to incorporate an assessment of pet presence, ownership and characteristics when caring for the adolescent client. by asking about pets in the home, the nurse may open lines of communication into traditionally unspoken areas of support which the patient may view as important. this will facilitate the establishment of rapport as well as identify potential coping mediators for the individual in regard to emotional reappraisal. the planning of any nursing care must be based on individualized assessment and directed towards client-specific interventions. nurses can devise strategies to include clients' pets in the establishment of coping mediators for selected adolescents at risk for mental health concerns. this practice would be in keeping with theory-directed nursing practice, as well as representing movement towards the new vision for innovative, consumer-focussed mental health promotion and illness prevention care. the practice of including pets in the mental health care of adolescents would likely also be welcomed by clients and their families, the exceptions being those families with adolescents who were already severely depressed (stallones et al., ) or those families where there may be situations of abuse (robin, ; robin et al., ). the findings of this study also direct the nurse to incorporate the entire family when working with the adolescent and pet, as the least depressed adolescents were from those households where pet ownership was an acknowledged family venture. it is also important to remember, however, that even those who were not particularly attached to their pets, derived benefit from the animals in the home. therefore, planned care may include the involvement of animals to which the client does not even seem to be particularly attached. once the plans are made for integration of pets into the mental health care of the adolescent, implementation should proceed with the objectivity and continual evaluation and reassessment required for any nursing intervention. the descriptive parameters of nursing care applications of human - pet - health interactions must be documented to add to the existing knowledge base about this relationship. it is important that all interventions be client-focused and family- focused and not the result of a program designed to meet nursing's goals. evaluation of the interventions should focus on the health or illness parameters of the adolescent as well as identifying the role which the pet played in any change in health status. the use of familiar conceptual frameworks such as coping, social support, family systems, attachment, loss, pain, stress management, pain management, and adaptation may assist by providing guidance as to the process by which the pet may influence the adolescent's health system. the use of a model for nursing and conceptual framework for the role of the pet within the adolescent's system will provide both direction for nursing care and facilitation of growth in pet-related coping behaviours for the client. the systematic inclusion of pet assessment in the parameters of individualized health care will add to the knowledge of pet and human health interactions upon which nursing care can be based. nursing research with respect to nursing research, this study is in keeping with the recommendations of the canadian nurses association ( ) regarding further study into the value of natural support systems to promote mental health, the identification of risk factors for mental illness, and the exploration into the establishment of coping resources for individuals and families. the study provides empirical validation of much of the previous anecdotal nursing literature. the findings provide a base for further exploration into the relationship between pets and the emotional health of urban adolescents. the first of further studies could be a replication study using an alternate instrument to measure depression in the adolescent population. such an exercise would validate the findings of this study and the use of this tool with such a culturally diverse adolescent population. qualitative studies could be undertaken to determine the meaning of pets for adolescents, the specific role of pets as coping mediators, the role of pets in families with adolescents, and the role of pets in first generation canadian families with adolescent members. other studies could involve pre-test, post-test control group designs of families with adolescent members who had acquired a family pet for the first time. this would help to determine causal relationships between pets and the emotional health of adolescents and/or families. through the process of studying the prevalence of depression in urban adolescents and pets as a potential coping mediator, this study has demonstrated that the emotional relationship between humans and animals which dates back , years is still active in regard to the mental health of urban adolescents. the credence that florence nightingale gave to the benefit of pets in the care of the sick over years ago has relevance for the future direction of mental health nursing. the relationship between people, pets, and health can have a more central role in health care in the future. references ackerson, l., dick, r.w., manson, s., & baron, a. 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( , july). friends, confidants. and companion animals: a study of social support characteristics and psychological well-being among pet owners and non-owners. paper presented at the th international conference on human animal interactions: animals and us, montreal, canada. appendix a adolescent and pet characteristics questionnaire household pets and depression among urban adolescents adolescent and pet characteristics questionnaire for the following questions please circle the best option or write your answer in the space provided. do not put your name on this form. personal characteristics sex:^m^f ^ age: ^ average marks in school this year: a^b^c^d^f number of parents living with you: ^ number of brothers^ & sisters ^ living with you. your position in the order of kids in your family (eg. oldest, youngest, second out of four, ninth out of ten): country you were born in: ^ country your mother was born in:^ country your father was born in: ^ number of years you have lived in canada:^ number of years you have lived in your current neighbourhood:^ primary language spoken at home:^ do you have any pets in your home? ^yes ^ no. (if no, then stop here). pet characteristics types of pets you currently have (and how many of each) dog(s)^ cat(s)^bird(s) fish^ reptile(s)^insect(s) small mammal(s),(eg. hamster, gerbil, rabbit, rat) type:^ other(s), type:^ if you currently have more than one pet, for the following questions, answer in regard to your favorite pet: type of pet: ^name of pet:^ main owner of the pet: ^ yourself ^ parent(s) ^ brother or sister^whole family for what occasion did you or your family get this pet? (eg. birthday, other pet died, brother left home, nothing special, other): how long you have had this pet:^ rate how close or emotionally attached you are to your favorite pet: ^ ^ ^ ^ not attached^somewhat attached ^ attached^very attached extremely attached appendix b center for epidemiologic studies depression scale household pets and depression among urban adolescents center for epidemiological studies depression scale for the following statements, circle the number for each statement which best describes how often you felt this way during the past week. during the past week: . i was bothered by things that usually rarely or none of the time some or a little of the time occasionally^most or or a moderate all the amt. of time^time don't bother me. . i did not feel like eating; my appetite was poor. .^i felt that i could not shake off the blues even with help from my family or friends. .^i felt that i was just as good as other people. .^i had trouble keeping my mind on what i was doing. .^i felt depressed. .^i felt that everything i did was an effort. .^i felt hopeful about the future. .^i thought life had been a failure. .^i felt fearful. . my sleep was restless. . i was happy. . i talked less than usual. .^i felt lonely. . people were unfriendly. .^i enjoyed life. .^i had crying spells. .^i felt sad. . i felt that people disliked me. . i could not get "going". appendix c letter of school consent and consent form the university of british columbia school of nursing t. - wesbrook mall vancouver, b.c. canada v t b fax:( ) - household pets and depression among urban adolescents dear your consent is requested to enable a sample of grade nine students from your school to participate in a brief questionnaire survey to take place within school hours. this survey has been approved by the vancouver and victoria school boards. it addresses the important issue of depression among our adolescent population. depression is known to be associated with increased risks of dropping out of school, substance abuse, delinquency, and suicide. this survey will anonymously survey grade nine students in regard to certain demographic characteristics (the presence of household pets being a major focus) in addition to measuring their current level of depression (if any). the survey takes approximately minutes and would be ideally administered by myself in a pre-arranged portion of class time. (homeroom, physical education, or health classes are preferable to increase the likelihood of student attendance.) as the questionnaire is anonymous and will be collected by myself, student confidentiality will be ensured. the analysis of this data may potentially reveal situations of a severely depressed student(s). should this be the case in your school, i will contact you with this information as well as resource referrals for mental health education and consultation for your students as a group. the completion of this project will contribute greatly to the understanding of the incidence and characteristics of adolescent depression among grade nine students in selected vancouver and victoria high schools. i thank you in advance for your consideration and support in this regard. should you wish to give your consent, please sign the attached form and retain this page for your records. i will contact you by telephone within the next couple of weeks to arrange a time to meet with you and answer any questions you may have and pick up your consent form. please do not hesitate to call me at the university of british columbia, school of nursing ( - ). thank you once again, i look forward to meeting you. respectfully, molly nevin-haas, r.n., b.s.n. graduate student dr. marilyn willman, rn., ph.d. & gloria joachim, r.n., m.s.n. faculty advisors, school of nursing university of british columbia ( - ).^ page of the university of british columbia school of nursing t. - wesbrook mall vancouver, b.c. canada v t b fax: ( ) - household pets and depression among urban adolescents a questionnaire survey by molly nevin-haas signed school consent i have read the attached information sheet and hereby give / do not give ( please circle ) my consent to have the above study take place at ^ school. i understand that individual student and parental consent will be obtained by the researcher prior to surveying the students selected. i also understand that i may withdraw permission for this school to participate in the study at any time before or during the course of the sampling without experiencing any negative ramifications from the researcher. signed, (print name) (position) (date) page of appendix d letter of parental informed consent and consent form the university of british columbia g school of nursing t. - wesbrook mall vancouver, b.c. canada v t b fax: ( ) - household pets and depression among urban adolescents letter of informed consent dear parent: your consent is requested in enabling your daughter or son to participate in a brief questionnaire survey to take place at their high school. this survey has been approved by the vancouver and victoria school boards and addresses the important topic of teenage depression. it will determine the level of this occurrence among our young people as well as identify its relationship with a selection of individual characteristics. the presence of pets in the home will be the main focus of this survey. however, even if you have no pets in your household your child's opinion is important to this study. please be aware that the questionnaire is completely anonymous. your child's name will not appear on the questionnaire. the entire survey will take no longer than minutes and will be completed during an allotted portion of school time. should you choose not to allow your child to participate in the questionnaire survey, there will be no impact on your child's education or treatment in class. should you give your permission for your son or daughter to participate in the survey, your child will also be given an opportunity on the day of the survey to consent to participate. either decision you or your child makes will not affect his or her education or treatment in class. please sign the attached consent and have your son / daughter return it to school. alternately send a note indicating your consent with your child to school. retain this sheet for your information. if you have any questions regarding this study, please do not hesitate to call me at the school of nursing, university of british columbia, ( - ). thank you for returning this signed form so promptly! sincerely, molly nevin-haas, r.n., b.s.n. graduate student dr. m. willman, r.n., ph.d. & g. joachim, r.n., m.s.n. faculty advisors u.b.c., school of nursing ( - ) ^ page of the university of british columbia school of nursing t. - wesbrook mall vancouver, b.c. canada v t b fax:( ) - household pets and depression among urban adolescents a questionnaire survey by molly nevin-haas signed parental consent i have read the attached information sheet describing this study. i give / do not give (please circle your choice) permission for my child, ^ to participate in the study, household pets and depression among urban adolescents. i understand that all results of the study are entirely anonymous. i also understand that i may withdraw consent for my child to participate in this study at any time before or during the course of the survey without any negative consequences towards myself or my child. signed, (parent or legal guardian). (date) page of appendix e information and instructions for questionnaire the university of british columbia no school of nursing t. - wesbrook mall vancouver, b.c. canada v t b fax: ( ) - household pets and depression among urban adolescents information and instructions for questionnaire this questionnaire is part of a survey to study the relationship between personal characteristics (and for those with a pet, also pet characteristics) and teenage depression. by filling out this questionnaire it is assumed that you are agreeing to have your answers used in our study. if you do not wish to participate, do not fill out the questionnaire. either choice you make will not effect your school standing in any way. do not put your name on any of these papers. please answer all the questions as honestly as possible. there are no right or wrong answers. the questionnaire consists of two pages. please be sure to complete both of them. the questionnaire will take approximately minutes. when you are finished please fold your papers in half to conceal your responses, and bring it to the envelope held by the researcher. thank you very much for agreeing to participate! your information will greatly help add to what is known about teenage depression. molly nevin-haas, r.n., b.s.n. graduate student ( - ) dr. marilyn willman, r.n., ph.d. & gloria joachim, r.n., m.s.n. faculty advisors u.b.c. school of nursing, ( - ) appendix f density distribution of ces-d scores p . - r= . - ra. . - . - r= ° . -a - - - - - ^ ^ cesd scores density distribution of overall raw ces -d scores . - - - - - - - - r: . - aq • . - ( o . -a.( pq . ^ . ^ . ^ . ^ . ^ . cesd scores using log transformation density distribution of overall ces-d scores using logarithmic (x+ ) data transformation 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page 	page [pdf] impact of patient-centered care innovations on access to providers, ambulatory care utilization, and patient clinical indicators in the veterans health administration | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /qmh. corpus id: impact of patient-centered care innovations on access to providers, ambulatory care utilization, and patient clinical indicators in the veterans health administration @article{burkhart impactop, title={impact of patient-centered care innovations on access to providers, ambulatory care utilization, and patient clinical indicators in the veterans health administration}, author={lisa burkhart and m. sohn and n. jordan and e. tarlov and pamela j gampetro and s. lavela}, journal={quality management in health care}, year={ }, volume={ }, pages={ – } } 	lisa burkhart, m. sohn, + authors s. lavela 	published 	medicine 	quality management in health care background: the veterans health administration piloted patient-centered care (pcc) innovations beginning in to improve patient and provider experience and environment in ambulatory care. we use secondary data to look at longitudinal trends, evaluate system redesign, and identify areas for further quality improvement. methods: this was a retrospective, observational study using existing secondary data from multiple us department of veteran affairs sources to evaluate changes in veteran and… expand view on wolters kluwer hsd.luc.edu save to library create alert cite launch research feed share this paper citationsbackground citations view all topics from this paper 	phencyclidine 	ambulatory care services 	chronic disease 	united states department of veterans affairs 	glucose 	home care services 	diabetes mellitus 	patient-centered care 	pentachlorophenol 	primary health care 	reporting 	patients citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency multicomponent interventions for enhancing primary care: a systematic review 	geronimo jimenez, d. matchar, g. koh, j. car 	medicine 	the british journal of general practice : the journal of the royal college of general practitioners 	 	 	pdf save alert research feed using action and coping planning to support self-management of heart failure among veterans 	s. thomas 	medicine 	 	pdf save alert research feed the effectiveness of an ambulatory care health system redesign on patient engagement, healthcare utilization, and clinical indicators 	nancy johansen madsen 	medicine 	 	view excerpts, cites background save alert research feed do interventions to improve patient experience increase quality of care, hospital efficiency and patient loyalty? 	 	pdf save alert research feed references showing - of references sort byrelevance most influenced papers recency the medical home: growing evidence to support a new approach to primary care 	t. rosenthal 	medicine 	the journal of the american board of family medicine 	 	 	pdf 	view excerpt, references background save alert research feed patient-centered approaches to health care 	s. mcmillan, e. kendall, + authors a. wheeler 	medicine 	medical care research and review : mcrr 	 	 	pdf 	view excerpts, references background save alert research feed a framework for making patient-centered care front and center. 	sarah m. greene, l. tuzzio, d. cherkin 	medicine 	the permanente journal 	 	 	pdf 	view excerpt, references background save alert research feed importance of health system context for evaluating utilization patterns across systems. 	j. burgess, m. maciejewski, + authors chuan-fen liu 	medicine 	health economics 	 	 	view excerpt, references methods save alert research feed closing the divide: how medical homes promote equity in health care—results from the commonwealth fund health care quality survey 	a. beal, m. doty, susan e. hernandez, k. shea, k. davis 	medicine 	 	 	pdf 	view excerpt, references background save alert research feed crossing the quality chasm: a new health system for the st century 	a. baker 	computer science 	bmj : british medical journal 	 	 , 	 save alert research feed effect on health-related outcomes of interventions to alter the interaction between patients and practitioners: a systematic review of trials 	s. griffin, a. kinmonth, m. veltman, s. gillard, j. grant, m. stewart 	medicine 	the annals of family medicine 	 	 	pdf 	view excerpts, references background save alert research feed patient safety and quality: an evidence-based handbook for nurses 	r. hughes 	psychology 	 	 , save alert research feed the role of public clinics in preventable hospitalizations among vulnerable populations. 	a. epstein 	medicine 	health services research 	 	 	pdf save alert research feed what is “quality improvement” and how can it transform healthcare? 	p. batalden, f. davidoff 	medicine 	quality and safety in health care 	 	 	pdf 	view excerpt, references background save alert research feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page assessment and non-pharmacological management among adults with a dementia diagnosis in a residential care setting: a best practice implementation project antonia hynes rn dip. management sue beirne rn dip. management melissa taylor phd candidate clint moloney phd . symes thorpe aged care residential facility, toowoomba, anglicare southern queensland . university of southern queensland primary contact antonia hynes ahynes@anglicaresq.org.au key dates commencement date: july completion date: april executive summary background this evidence implementation project reports on a project conducted in the bed special care unit of symes thorpe residential facility in queensland, that focused on improving assessment and management of elderly residents diagnosed with dementia. the motivation for the project, and its value, should be understood in the context of a lack of a validated tool or standardized documentation being used to assess behaviors of residents diagnosed with dementia, as well as little targeted education being provided to staff on behaviour management strategies. objectives to promote evidence based assessment and non-pharmacological management of challenging behavior in elderly adults living with dementia in a residential setting in queensland. mailto:ahynes@anglicaresq.org.au jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page methods the project design was based on the joanna briggs institute’s practical application of clinical evidence system and getting research into practice audit and feedback tool. a baseline audit of care documentation in the residents in the special care unit was conducted. meetings were held with the project team to reflect on the findings of the baseline audit and plan strategies to improve practice. a validated tool, the cohen-mansfield agitation inventory, was introduced to improve assessment of patients together with a program of staff education to inform the use of the inventory. a staff education program was introduced to improve staff awareness and use of strategies for behavior management of residents in the special care unit. two follow up audits were conducted. the second audit was undertaken months post introduction of the cohen mansfield agitation inventory and staff education program. results the follow up audits demonstrated % compliance in use of the cohen mansfield agitation inventory, and % staff attendance at education sessions. the audit also showed significant increase and improvement in quality of related resident care documentation, for example documenting outcomes of use of non-pharmacological therapy such as music, exercise, pets etc. conclusions the findings show that a comprehensive education program can make an effective contribution to the understanding of challenging behaviors in dementia residents, and the associated documentation required to monitor them effectively. keywords best practice; implementation; dementia; non-pharmacological; challenging behaviors background this best practice implementation project was based on an audit and feedback tool that had the purpose of improving assessment and management of challenging behavior in individuals with dementia living in a residential facility. the focus in the project was on assessment and utilization of music and multisensory stimulation. dementia may be defined as ‘a syndrome typically characterized by chronic, often progressive disturbances in higher cognitive functioning including memory, thought processing, orientation, comprehension, calculation, learning capacity, language, judgment and physical capacity’. with the increase in prevalence of a diagnosis of dementia, the need for strategies to support and manage adverse behaviors and alterations in mood as they arise using non-invasive and non-pharmacological intervention has increased. a key concern raised by staff or carers tending to the daily care and support of individuals with dementia is the high level of agitation that these individuals experience. agitation has been defined as the ‘inappropriate verbal, vocal, or motor activity that is not explained by needs or confusion’. (p jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page ) pharmacological interventions are commonly prescribed to decrease the level of agitation, however the effect of many of these medications is often varied. , the use of non-pharmacological interventions as a supportive mechanism for reducing behavioral challenges and agitation in individuals is popular. , , , a range of strategies for supporting residents with a diagnosis of dementia are commonly used in practice and identified in the literature as interventions, which are potentially effective in managing challenging behavior. these include music and aromatherapy, pet therapy, massage, multisensory stimulation and exercise. , this project chose to introduce into the facility non-pharmacological music and multisensory stimulation interventions as a means to promote evidence best practice in the care of patients with dementia. the intention of a potential reduction in challenging behaviors amongst dementia residents and thereby their improved wellbeing. this project was undertaken within a residential care facility located in a regional centre in queensland. the facility has beds. the beds are allocated to high and low care residents. within the facility a special care secure unit exists that contains beds. this unit caters for those residents with a diagnosis of advanced dementia that are fully mobile; however require comprehensive care requirements to maintain their safety. the study was undertaken within the special care secure unit only. the focus of this evidence implementation project and selection of music as a strategy for enhancing management of challenging behavior was informed by three considerations. firstly the author/project leaders’ interest in providing support to enhance the quality of life for those with dementia in the setting in which she works, as well as for the health workers experience of managing challenging behavior in the setting. secondly, the project leader/authors understanding that some aspects of the practice for managing challenging behavior in the setting were not congruent with best practice standards, and hence that assessment and management of challenging behavior could be easily improved by introducing best practice assessment tools and strategies. thirdly, the author learning about the potential for music to be used to improve the quality of life and reduce agitated behavior in individuals with dementia. the author/project leader attended a dementia conference held in tasmania ( ) at which presentations and expert discussions highlighted the use and potential remedial power of diversional therapies, such as music and multisensory stimulation for enhancing the quality of daily living for individuals with dementia. there was an indication that by implementing these therapies a possible impact resulting in a reduction of challenging behaviors may occur. the literature identified a study where following the introduction of music therapy, significant reductions in agitation and disruptive behavior scores were observed. the study also indicated that the prescription use of pharmacological intervention was not increased in the study timeframe, suggesting that the impact of music therapy was positive to the individuals involved. to facilitate understanding of the motivation for the project, and what aspect of practice it changed, it is necessary to describe the method of assessing behavior in dementia residents used in the facility prior to the introduction of the project. in this regard, assessment is documented on admission to the residential setting, then again within the first two months using the aged care funding instrument. this jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page documentation is required to meet the requirements from the department of health and ageing, and also to accurately develop the initial care plan for the individual. these assessments, whilst meeting initial behavior patterns are often not revisited and do not reflect the ongoing changing behaviors of the individuals unless overt or prolonged problematical behaviors are displayed. the introduction of a non-generic documentation tool such as the cohen mansfield agitation inventory actioned on a three monthly basis clearly captures the changing and challenging behaviors experienced in the secure special care unit. this tool is effective, as the tool is an objective rather than a subjective tool which clearly collects objective information opposed to the non-specific subjective complex form which was currently being used. the audit criteria used in this project were informed by the evidence on best practice non-pharmacological management of challenging behavior in individuals with dementia living in the residential setting. the key features of best practice management of challenging behavior, which informed the audit criteria, are as follows:  all staff working with older people with dementia in the nursing home setting should receive education on challenging behavior and how to manage them.  all individuals with dementia should receive a comprehensive behavior assessment which includes use of a recommended behavior screening tool.  health workers conducting the behavior assessment should have received training in the assessment tool used.  an individually tailored management plan for each person informed by the behavior assessment should be developed.  the evidence suggests that a range of non-pharmacological strategies may be effective and should be considered by clinicians to manage challenging behaviors, including music therapy, exercise, animal assisted therapy and multisensory stimulation.  as the evidence indicates that individuals may respond differently to different intervention strategies, the range, frequency and severity of disturbing behaviors should be assessed on a continual basis, to monitor response to interventions implemented and identify any need for change.  the results of behavior assessment and the strategy for managing challenging behavior should be documented in the older person with dementia’s nursing home records. aim and objectives the aim of this project was to promote evidence based assessment and management of challenging behavior in elderly adults living with dementia in a residential setting in queensland. more specifically, the objectives of the project were:  to improve local practice in the assessment of agitation and challenging behavior within elderly residents in an allocated special care unit. jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page  to facilitate appropriate non pharmacological interventions for addressing challenging behavior being implemented in the resident with a diagnosis of dementia according to the best available evidence.  to reflect on the results from the baseline audit and design and implement strategies to address areas of non-compliance with best practice in non-pharmacological management of agitation in dementia residents.  to undertake a follow up audit, assess the extent and nature of increased compliance with evidence based best practice, and identify areas and strategies to sustain and enhance care in delivery of non-pharmacological management of agitation in dementia residents. methods this project used the joanna briggs institute (jbi) practical application of clinical evidence system (paces). jbi paces is an online tool for health professionals and/or researchers to use to conduct efficient audits in small or large healthcare settings. paces has been designed to facilitate audits being used to promote evidence informed health practice and includes a getting research into practice (grip) framework that was used to help identify factors underpinning gaps between practice and best practice, and strategies to overcome them. the project activities, best described as three distinct yet interrelated phases of activities, are described directly below. phase : stakeholder engagement (or team establishment) and baseline audit the first activity in phase , was the development of evidence informed criteria for auditing practice. the second was the establishment of a project team for the project and a mid cycle audit. the third activity was a baseline audit of best practice. the project team consisted of the facility manager, clinical nurse consultant, clinical nurse educator and registered nurses working specifically within the bed special care secure unit. the staff within the project team were responsible for the collection of audit data and the implementation of the cohen mansfield agitation inventory and the education of staff. the project team also offered support and guidance to staff in the audit process, and in understanding the use of evidence in practice. the audit criteria developed for use in the project (baseline audit and follow up audits) are set out in table below, together with an explanation of how compliance was measured and the audit sample. the size of the sample (patients/residents with dementia and staff) was the same across audits. jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page table : audit criteria from paces audit criterion sample size. method used to measure compliance with best practice. . a comprehensive behavior assessment is undertaken using a screening tool recommended by experts (cmai). special care residents diagnozed with dementia resident’s chart checked. a comprehensive assessment was seen to have been conducted if it was evident in the resident chart. assessment/measurement conducted by the registered nurse at scheduled three monthly intervals. . all staff working in the residential facility received training in the last year on how to manage challenging behavior. staff comprising of qualified registered staff and personal care workers review of staff training attendance records. yes awarded if evidence of training on how to manage challenging behavior in last months. . the management plan for each individual includes one or more non-pharmacological therapy (music, exercise and multi sensory stimulation). special care residents diagnozed with dementia checking management plans are inclusive of non pharmaceutical interventions in a residents chart. assessment/measurement conducted by the diversional therapy team in collaboration with the registered nurses at scheduled three monthly intervals. . behavior is reassessed every three months to identify adverse or positive response to the interventions. special care residents diagnozed with dementia checking in the charts that the behavior assessments have been actioned and reassessed. . behavior assessments and management plans for each older person with dementia are documented and filed in resident charts. special care residents diagnozed with dementia checking that the relevant documents are filed in the appropriate place. these documents include the behavior assessment form and the resident management plan. the project utilized a select group of residents that met all of the following criteria –  they were residents within the special care secure unit who had a diagnosis of dementia  they were receiving non pharmacological intervention as part of their care requirements. a total of residents were chosen for the purpose of this project. the audit criteria , , & was used to collect data collected for this group of individuals. in relation to staff training in behaviors associated with dementia, data was collected from staff who participated in the education program to address audit criteria number . jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page the baseline audit was undertaken during august and september , over days. a mid cycle audit was undertaken in october , culminating in the final audit occurring in december . phase : design and implementation of strategies to improve practice (grip) the results of the baseline audit were reviewed by the team members. the results of the initial audit were discussed by the key members of the team, and using the jbi grip tool, barriers were identified in relation to implementation of this best practice model. the results of grip are shown in table below. all team members involved were invited to two meetings to discuss the initial audit findings and formalize a strategy to promote best practise and overcome barriers identified. engaging staff and getting staff to attend meetings proved a challenge. as is related in the results section, in table , one of the barriers identified during the meeting was resistance of qualified staff to change current practise, for example reticence to introduce a new documentation tool (cmai) when a generic form had been in use previously. strategies to improve practise was to introduce the cohen mansfield agitation inventory at a qualified nurses meeting with full explanation and education session on completion of the tool. all qualified staff were encouraged to feed back any issues or concerns with the tool to the key team members, so that it could be addressed and or revisited. the clinical educator contacted alzheimer’s australia for assistance in educational materials suitable for all levels of staff regarding management of behaviors as a result of dementia. a dvd was sought from the aged care channel specifically on behavior management, along with a simple questionnaire as a follow up for staff involved. posters were strategically placed in the facility including a laminated poster which was put into the ensuites of the residents involved in the audit, with tips and strategies to deal with behaviors which raised awareness of the staff in this area. the dvd sessions were held twice weekly for six weeks to capture as many staff as possible, and any staff who were unable to attend were offered one to one sessions with the clinical educator. phase : follow up audit post implementation of change strategy two follow up audits were conducted. a mid cycle audit was undertaken in october , culminating in the final audit occurring in december . the same sample size of residents was used in each audit cycle. as the audit criteria involved reassessment at three monthly intervals for criteria , and it was decided to review all of the criteria mid cycle / / and complete the final cycle / / . jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page results baseline audit figure below shows the percentage compliance with best practice for each of the five audit criteria in the baseline audit. figure : baseline compliance with best practice for audit criteria (percentage). as can be seen from figure , the best performance was seen for the criteria three ( %) and four ( %). these criteria related to three monthly reviews of resident behavior management care plans and assessment as per anglicare protocol. poor compliance was highlighted in criteria two which applied to staff education received in the last twelve months ( %) in management of challenging behavior. for criteria one and five, the % compliance was expected as the project team was aware that an assessment tool was not in use. the baseline audit result clearly indicated the need for introduction of an assessment tool and education in behavior management for all staff. phase : strategies for getting research into practice (grip) the main barriers, strategies, resources and outcomes identified are presented in table below. three strategies were identified to overcome barriers to best practice, of which all were implemented in the facility throughout the process. jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page table : grip matrix barrier no validated assessment tool in use strategy implementation of a validated tool for assessment of increase or decrease resources staff time validated assessment tool outcomes use of validated assessment tool. reluctance of qualified staff to incorporate a validated assessment tool into the three monthly reviews. educate qualified staff in the implementation and benefits of using a validated tool staff time improved documentation and assessment no standardized education program for staff to educate staff in behavior management of residents with a diagnosis of dementia. liaison with external providers to obtain educational materials. education tools e.g. dvd and questionnaire. posters showing simple tips to address behaviors staff time all staff received a standardized level of education and awareness regarding behavior management strategies for residents with a dementia diagnosis. posters laminated and displayed in the ensuite of a resident with a dementia diagnosis. phase : follow-up audit(s) follow up audit figure shows the % compliance with best practice found in the first follow up audit. jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page figure : compliance with best practice audit criteria in follow up audit one compared to baseline audit (%) as can be seen in figure , all criteria audited showed significant improvement. this included criteria one and five for which % was achieved. this achievement reflected the introduction of the comprehensive behavior assessment tool. % compliance was achieved in criteria two, which related to education of all staff in the management of challenging behaviors in residents with dementia. criteria three and four improved to % and % respectively, both of which related to the reassessment and review of the resident behavior management plan. follow up audit the project team reconvened and reviewed the results of the previous audits. as no further barriers were identified, it was decided to continue to reinforce the earlier identified strategies. the results were tabled at a qualified staff meeting, personal care worker meeting and also at a general meeting. figure below which presents the % compliance for each audit criteria in the second follow up audit, shows that further improvement was made in criteria four, which improved from a compliance of % to full compliance of %. figure : compliance with best practice audit criteria in follow up audit compared to follow up audit (%) jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page discussion this project looked at the introduction and implementation of a validated behavior management tool into the special care unit which houses residents with a diagnosis of dementia within an bed residential facility. the project also looked to create an effective standardized education program for all staff. the main successes of the project were improved knowledge of behavior assessment, and management strategies for residents with dementia in staff. the education program was undertaken using materials from an external service provider, and constant follow up over a six week period by the clinical educator was well received. the introduction of a validated behavior assessment tool (cmai) which effectively monitored both increase and decrease of behavior, was used on a three monthly basis as part of scheduled care plan review. the implementation of a comprehensive assessment tool combined with education of staff has proved to be beneficial as it reflects the current behavior status of residents. the project undertaken, despite the initial barriers identified, has been successful. the validated behavior assessment tool will continue to be incorporated in the scheduled three monthly reviews by the qualified staff. education of staff in the management of challenging behavior has been added to the annual training schedule. conclusion in conclusion, the aims of the project were realized. this was in no small part to the cohesive team approach to improve best practise and to obtain materials to accurately monitor resident behavior. the educational program, inclusive of close liaison with external service providers (alzheimer’s australia) was successful and well received by all staff. the strategies carried out in this project will be continued in the anglicare symes thorpe residential facility. now that symes thorpe has a validated tool in place, further research will be undertaken into the effects of music therapy in the dementia setting, specifically tibetan singing bowl therapy and the impact this therapy has on reduction of challenging behavior. jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page the project was successful in increasing knowledge in this area, and providing future direction for sustaining evidence-based practice change. future plans and ideas are in place and have been discussed. further audits will need to be carried out in order to maintain the practice change, and ensure the project is supported and maintained. conflict of interest no conflicts of interest were identified. acknowledgements the opportunity to undertake the clinical fellowship program was due to a teaching research aged care services grant awarded to dr. clint moloney, from the university of southern queensland. i would like to acknowledge the key staff of anglicare symes thorpe, kelsey franklin facility manager, and beverley jordon, documentation nurse who have assisted, encouraged and supported me throughout the project. special thanks to the joanna briggs institute, in particular dr judith gomersall, the jbi staff and facilitators for their patience and assistance. jbi database of systematic reviews & implementation reports ; ( ) - doi: . /jbisrir- - page references . forbes d, forbes s, morgan d, markle-reid m, wood j, culum i. physical activity programs for persons with dementia. cochrane database syst rev. ; . . kong e-h, evans l, guevara j. nonpharmacological intervention for agitation in dementia: a systematic review and meta-analysis. aging & mental health, ( ), – . . de vreese l, mantesso u, de bastiani e, weger e, marangoni a, gomiero t. implact of dementia-derived nonpharmacological intervention procedures on cognition and behaviour in older adults with intellectual disabilities: a -year follow-up study. j policy & practice in intellectual disabilities. ( ), – . . huei-chuan s, wen-li l, shu-min c, smith gd. exploring nursing staff’s attitudes and use of music for older people with dementia in long-term care facilities. j clin nurs. , - . . ridder hm, wigram t, ottesen am. a pilot study on the effects of music therapy on frontotemporal dementia – developing a research protocol. nordic j mus ther. ( ), - . . ridder hm, stige b, qvale lg, gold c. individual music therapy for agitation in dementia: an exploratory randomized controlled trial. aging & mental health, . ( ), - . . xue y. behavioral and psychological symptoms of dementia: non pharmacological management. evidence summary: jbi connect+. joanna briggs institute, . sample thesis title with a concise and accurate description bare care: working within/reworking restructured long-term care by nicole molinari b.a., simon fraser university, a thesis submitted in partial fulfillment of the requirements for the degree of master of arts in the faculty of graduate and postdoctoral studies (geography) the university of british columbia (vancouver) august © nicole molinari, ii the following individuals certify that they have read, and recommend to the faculty of graduate and postdoctoral studies for acceptance, a thesis/dissertation entitled: bare care: working in/reworking restructured long-term care submitted by nicole molinari in partial fulfillment of the requirements for the degree of master of arts in geography examining committee: geraldine pratt, geography supervisor kendra strauss, sociology & anthropology supervisory committee member supervisory committee member additional examiner additional supervisory committee members: supervisory committee member supervisory committee member iii abstract in the past nearly two decades in british columbia (b.c.), canada, the provincial government has restructured its responsibility for elder care, ceded to the private and financial sector an ever more prominent role, and opened up investment potentials for global capital. with this as context, i investigate the political economic developments and priorities, as well as everyday and uneven geographies of long-term care sector restructuring. through comparative ethnographic case studies in a for-profit and a non-profit care facility in vancouver, b.c., i explore how restructuring shapes the everyday conditions, practices, and relations of work and care. drawing on workers’ experiences and perspectives, i generate a nuanced and intimate account of care work reorganization and labour process change. understanding labour as embodied, i look at how workers’ bodies and subjectivities are enrolled into and affected by restructuring. i find that restructured care work entails dehumanization and is premised on the expendability of workers’ bodies, and emotional and mental energies. but it also contradictorily requires, cultivates, and draws on workers’ emotional labour to ensure quality care under deteriorating conditions. i look at how the embodied impacts of restructuring, including work intensification, injuries, and burnout, erode workers’ quality of life, future security, and even their family relations. i also explore the potentials and limitations of institutional and worker strategies that are employed to manage, buffer, or exploit restructured care settings. disrupting dominant conceptions of restructuring as rigid and uniform, these case studies show that restructuring processes and outcomes are not only flexible and particular, but are mediated by a constellation of actors, motivations, relationships, and practices. they also reveal iv that very different levels of care and quality of work, as well as distinct forms of privatization, emerge from the same restructured residential care system. overwhelmingly, state and capital’s neglect of the basic requirements for quality care and work results in deficits that are borne by frontline caregivers as well as those who must survive within this regime of care. at the same time, the work these caregivers do to fill the gaps in care ultimately aligns with and enables state and capital interests. v lay summary over the past nearly two decades, long-term care in british columbia (b.c.), canada, has been neglected, underfunded, and privatized. i look at the past, current, and future priorities and developments in the long-term care sector in b.c. and the vancouver coastal health authority (vch). i undertake ethnographic case studies in a for-profit and a non-profit care facility in vancouver, b.c. to understand how the restructuring of the sector shapes everyday work and care. workers’ experiences reveal the changes and challenges in care work overtime, and the impacts to their bodies, families, and future security. i also explore a variety of organizational and worker strategies that are used to manage restructured care settings. what these case studies highlight is that restructuring processes and outcomes are not only flexible and particular, but that they create very different levels of care and quality of work, with often negative consequences for workers and residents. vi preface this thesis, including design, field work, analysis, and presentation, is the original, unpublished work of the author. it was approved by the university of british columbia’s behavioral research ethics board, certificate number h - . vii table of contents abstract ......................................................................................................................................... iii lay summary .................................................................................................................................v preface ........................................................................................................................................... vi list of abbreviations .....................................................................................................................x acknowledgements ...................................................................................................................... xi dedication .................................................................................................................................... xii chapter : introduction ................................................................................................................ . the personal is political.................................................................................................. . methodology ................................................................................................................... . care facility sites, spaces, staff, and schedules ......................................................... . thesis structure ............................................................................................................ chapter : the restructuring of b.c.’s long-term residential care sector ........................ . social reproduction, care, and neoliberalization ........................................................ . devolution and austerity .............................................................................................. . privatization .................................................................................................................. . contracting out ............................................................................................................. . financialization ............................................................................................................. . privatizing profits and socializing risks ...................................................................... chapter : embodied labour and care work reorganization ............................................. . the labour process and workers’ bodies, subjectivities, and affects ....................... viii . care work: rationalized, intensified, and decontextualized ....................................... . dehumanization: machine work, robot workers, assembly line care .................... . structural violence, mental and emotional labour, and burnout ............................... . workers’ strategies of control and care ...................................................................... . implications of rationalization for worker and resident wellbeing .......................... chapter : institutional strategies to manage a restructured care sector .......................... . case study : mountain view ...................................................................................... . . contracting out and contract flipping................................................................. . . cutting labour costs: eroding wages, benefits, and staffing levels................. . . workload intensification and unpaid overtime ................................................. . . cost-cutting measures: food, programs, education, and maintenance ............. . . “it’s the budget” or practices of deception, disregard, and denial .................. . case study : gracious care centre ........................................................................... . . fundraising for quality of life programs, and juggling funding and staffing . . . taking on personal responsibility to manage funding shortfalls .................... . . fostering caring communities and commitments............................................. . . workplace support, appreciation, and advocacy ............................................. . downloading the care deficit to companions, volunteers, and family ................... . implications of institutional strategies for work and care conditions ..................... chapter : uncertain futures, different futures ................................................................... bibliography ............................................................................................................................... ix appendices .................................................................................................................................. appendix a interview schedule for frontline staff ............................................................... appendix b interview schedule for managers ....................................................................... appendix c interview schedule for family members ........................................................... x list of abbreviations british columbia (b.c.) bc care providers association (bccpa) health care assistant (hca) health employers association of bc (heabc) hospital employees’ union (heu) gracious care centre (gc) licensed practical nurse (lpn) mountain view (mv) new democratic party (ndp) public-private partnership (p ) registered nurse (rn) resident assessment instrument - minimum data set (rai-mds) request for proposal (rfp) special care unit (scu) vancouver coastal health authority (vch) workers’ compensation board (wcb) xi acknowledgements this thesis is the product of the many collaborators i worked and learned alongside throughout the research process. i offer gratitude to mountain view and gracious care centre for opening their doors to me. i owe a special thank you to the staff, management, residents, and family members for welcoming me into the facilities, being open to the project and my presence, and patient with my questions and curiosities. i am humbled and inspired by those who generously shared their experiences, perspectives, and time with me. for the mentorship, and critical questions and insights of geraldine pratt and kendra strauss, i am indebted. much gratitude to my partner, family, friends, and colleagues for their support, encouragement, and thoughtfulness throughout this process. lastly, i am so very thankful for the larry bell urban research award that supported my research fieldwork and the contributions of many participants. xii dedication for my grandparents, helen and harold boettcher, who lived the end of their years in long-term residential care and offered much inspiration along the way. for all those who strive towards creating and sustaining a world that supports caring well for oneself and one another. chapter : introduction . the personal is political like many feminist geographers, whose research emerges from and is situated in relation to their lived experience, my research interest stemmed from my family’s experiences in long- term residential care. my mother, sister, and i were heavily involved in the life and care of both of my grandparents, even after they entered residential care. my grandparents had two very different experiences there. my grandfather lucked out in the lottery placement of care and ended up a facility that was built on the premise of a home-like environment, and had a reputation for providing quality care. the facility had a stable core of care staff, and the intimacy of this home- like space fostered relations between staff, residents, and families. in contrast to common conceptions of institutional care, my grandfather not only was provided with good care, but in his ten years there, he flourished and grew as a result of meaningful relationships built with long- term care staff, and active involvement in quality of life programs (music and art therapy, and spiritual care). his caregivers intimately knew and were attentive to his needs, likes and dislikes, hobbies and personality quirks. they would take the time to play a coveted game of cards with him, and knowing he loved curling, two care staff took him to watch the curling bonspiel on their day off. the staff not only cared about him but also cared about our family, especially my grandmother who visited almost daily. yet in his time there, there were particular instances that revealed how policy changes and sectoral constraints altered the relations and conditions in the facility. with broader cutbacks and budgetary pressures, the facility was facing the threat of cuts to programs and services, and staffs’ wages. rather than rely on stable funding, the organization had to increasingly appeal to private donations and volunteers to maintain programs and services. in one case, when the art therapy program was cut back, the art therapist stayed on in a volunteer capacity to maintain the program one day a week. i became interested in better understanding the commitments and efforts of individual workers to ensure quality care in a deficit care system. my grandmother’s experience further honed my interest in interrogating the systemic constraints that underwrite the organization and provision of care. it took a long time, a lot of persistence, and extreme circumstances to get my grandmother into residential care. after my grandfather’s death, my grandmother’s dementia rapidly advanced to the point that she needed a higher level of care. yet we faced immense hurdles to accessing additional care because she already lived in an assisted living facility, and had the help of my mother and home care workers who would come to help her up in the morning and to bed at night. her wandering the streets, getting into strangers’ cars, or calling the police on what she believed to be a murderous daughter was not enough for her to secure a place in residential care. it was when she lashed out violently during a visit with my mother and sister, posing a threat to herself and others, that the health authority deemed her eligible for care. in contrast to my grandfather, my grandmother ended up in a locked, overcrowded, and understaffed special care unit of an old and decrepit care facility. because of understaffing, residents were placed in the lounge for easy monitoring. here they sat in a circle staring at one another or sleeping, while restless residents wandered the halls and into rooms. most were in a far more advanced state of dementia than my grandmother. being confused and upset by this unsettling and unfamiliar space, she confined herself to her room and wept much of the day. while staff were caring, they were overworked, and hardly present. with few staff and limited time, workers were typically occupied with residents who had the highest care needs, effectively neglecting my grandmother. this environment lead to my grandmother’s decline and my mother’s frantic move to get my grandmother transferred to the facility where her husband, my grandfather, lived, and where she knew the staff and had connections to. a handful of months later she was transferred and lived out her final months in ease. . methodology my research investigates the everyday contexts of long-term care sector restructuring in vancouver, british columbia (b.c.), canada. i explore three key aspects of restructuring: the political economy of long-term care restructuring; care work reorganization and its embodied effects; and, institutional and worker strategies employed to manage restructured care settings. i believe that the everyday world of care work, and the changes it is undergoing, can provide fascinating insights into how economies and societies operate. my research is guided by theoretical frameworks from feminist political economy and labour geography, and geographies of care and social reproduction (armstrong et al., ; armstrong & braedley, ; mcdowell, , ; england, ; katz, marston & mitchell, ; meehan & strauss, ; pratt, , ). while long-term residential care restructuring in b.c. has been pursued through devolution, austerity, privatization, and financialization , i seek to better understand the recent research has explored the processes and effects of restructuring in long-term residential care across canada (armstrong, armstrong & scott-dixon, ; armstrong & braedley, ; armstrong et al., ). relevant studies include those that focus on devolution and austerity (cohen, ; cohen, murphy, nutland & ostry, ; cohen, tate & baumbush, ; longhurst, ) and privatization, financialization, corporatization, and contracting out (armstrong, armstrong & macleod, ; harrington et al., ; stinson, pollak & cohen, ). particularities and tendencies in the dynamics of restructuring. i wed theoretical and empirical insights on care sector restructuring, and changes to the organization of work and provision of care (armstrong & armstrong, ; baines, ; banerjee, armstrong, daly, armstrong & braedley, ; cohen, ; mcdowell, ) to those that attend to embodiment and identity, affect and emotional labour, the body and materiality, difference and devaluation (bolton, ; ducey, ; england & dyck, ; lanoix, ; salzinger, ; twigg, wolkowitz, cohen & netteton, ; wolkowitz, ; wolkowitz & warhurst, ). following armstrong and colleagues, i understand care as a relationship rather than simply a service, such that the conditions of work and the conditions of care are co-constituted (armstrong et al., ). critical attention to the ways in which intimate scales and subject positions articulate with broader webs of power, knowledge, and oppression open up alternative narratives and novel ways of analyzing and understanding restructuring. i seek to garner specificity and broader connection, and “hunt for the global forces that quietly undergird personal experience and exchange” (pratt & rosner, , ). just as other feminist analysts have unsettled distinctions between production and reproduction, public and private, home and work, care and coercion, economy and society, global and intimate, i strive to show they ways in which they enmesh, shift, and blur (katz, marston & mitchell, ; pratt & rosner, ). my research is a situated geography, or grounded account, of care sector restructuring. in this regard, restructuring is not an abstract, uniform, and autonomous process but highly contingent and uneven. it operates through a variety of social actors, practices, relations, and institutions, with differing impacts and implications for various groups involved. this research thus aligns with the work of feminist scholars who challenge dominant and decontextualized conceptions of capitalism, neoliberalism, globalization, and financialization (nagar et al., ; pollard, ). it also answers the call to pay greater attention to the body and embodiment in workplace and labour geographies (mcdowell, ; mcmorran, ). crucially, it draws, builds on, and i hope will inform the literature and debates around the nature of and contestations over care sector restructuring and care work reorganization by attending to regional and local particularities (b.c. and vancouver), intimate scales, and embodied accounts. my research undertakes two comparative ethnographic case studies in a non-profit and a for-profit long-term residential care facility. this includes over hours of participant observation and in-depth semi-structured interviews with frontline workers, management, and family members. an analysis of grey literature and policy documents highlights past, current, and future priorities and developments in the long-term care sector in b.c. and vancouver coastal health authority (vch). the aim of these case studies is to connect everyday experiences, social relations, and material conditions within facilities to broader social, political, economic, and historical forces (burawoy, ; griffith & smith, ; smith, ). ethnography entails sustained engagement, involvement, and immersion in everyday life and work in these two care facilities. it provides for rich, deep, contextualized, and nuanced descriptions, interpretations, and explanations of the phenomenon under study. ethnography aptly accounts for the embodied, experiential, relational, and sensory dimensions of both care work and fieldwork (mcmorran, ; pink, ). comparative case studies allow me to tease in particular, i have garnered countless critical insights from publications emerging from the reimaging long-term residential care project, led by pat armstrong out of york university. much of this work focuses on approaches to care, work organization, and issues of financing and ownership. see a list of publications here: http://reltc.apps .yorku.ca/publications long-term residential care is defined as the provision of accommodation, supervision, care, and support for persons unable to function independently due to complex medical, physical, or cognitive care needs. in colloquial terms it is better known as a nursing or care home. apart place-based tendencies and particularities of restructuring processes and outcomes. i am interested in how distinct logics, motivations, and relationships shape uneven geographies of restructuring in non-profit and for-profit sites. these place-based ethnographic case studies are not representative of the entire long-term care sector in b.c. yet they illuminate broader temporal changes to the sector and care work, and yield surprising and specific findings about restructuring. the comparison offers hypotheses and hunches that could be further explored in a more expansive study. i initially reached out to fifteen non-profit and for-profit care home administrators, and the two facilities that eventually became the focus of my research were both a good fit for the research, and interested and able to take me on as researcher. it was sheer luck that the two facilities happened to be a for-profit and non-profit, which allowed for a comparative analysis. for both facilities, i completed an internal ethics review in addition to the standard ethics review of my academic institution. i initially assumed that a facility that let a researcher in would have “nothing to hide”, and likely offer higher quality work and care, and have positive management- worker relations. i quickly learned that this was too simple a picture, and there were a myriad of adverse developments occurring, particularly in one of the facilities, prior to and during my time there. i am grateful that both institutions trusted that i would represent the challenges under which they operate fairly, and granted me such open access to their facilities. fieldwork spanned ten months from august to may . i spent an average equivalent of two full days a week in the facilities. while the bulk of my time was spent there between am and pm, i also spent time in the facilities from am until pm to see differences in shifts and routines. i went around the facility with a notepad and pen in my pocket, and would jot brief notes that i expanded on as soon as i was able to. out of a commitment to conduct the research in an involved and reciprocal manner, and avoid being the distanced, detached observer, i decided to pursue participant observation through a volunteer position in the recreation department. overtime, however, my formal volunteer role was transposed to just “hanging out”, helping out, and observing care home life outside of the confines of the recreation department. i became a fixture of facility life and work (foner, ). i helped staff with activities and events, served tea and coffee at mealtimes, portered residents around the facility and spent one-on-one time with them, and sat and chatted with families in common spaces or staff in the staff room and on the floor. this allowed me to engage with and observe the daily activities and people in the facilities on a more intimate level. it provided a grounded understanding of how restructuring plays out in the relationships, practices, and conditions of work and care. it also afforded the opportunity to better get to know and develop relationships with those who work, live, and visit the facilities. overall, staff responded positively to my choice of research methods. they felt that, as the frontline of care, their experiences and concerns should be integral to research and policy decisions related to improving care and work. they liked that i was able to see the everyday demands and challenges of their work, up close and over time. for reasons of privacy and informed consent, participant observation was limited primarily to the common spaces (lounges, dining areas, hallways, activity rooms, staff rooms, etc.) unless i was otherwise invited (into a resident’s room, manager’s office, nurses' station, etc.). i did not enter the private spaces of residents' rooms to observe the most intimate contexts of care unfold. it was the everyday informal conversations and experiences generated around the staff room table and on the facility floors that generated some of the richest data. while i did not include residents in formal interviews because of challenges with informed consent and meaningful participation, particularly for those with cognitive impairments, their perspectives and stories are included through everyday interactions and informal conversations. participant observation was a reflexive practice of honing attention, watching interactions, navigating relationships, and reflecting on one’s perceptions, thoughts, and reactions. even while i volunteered in both facilities, i was integrated into work and life to varying degrees in each site. at gracious care centre (gc), the non-profit facility, the management always made space and time for me. they were open to me sitting in on a variety of meetings, shared key documents with me, and provided answers to my questions. i was asked multiple times to offer feedback on any improvements to care, or to voice any concerns i had. at mountain view (mv), the for profit facility, while i worked closely with one manager who offered much of her time and insight, management were more harried, and i often felt like i was in the way or an extra burden. when i expressed interest in obtaining key documents, or being involved in meetings, i was never offered the opportunity. my requests for follow-up questions were sometimes not answered or displaced. i am unsure if this was due a lack of transparency or because management were simply so busy that my requests were a low priority. i am highly conscious of the work-related pressures that managers and frontline staff face, and i attempted to respect people's right to privacy and non-interference. i was attentive to the potential demands my research or position placed on them. in the staff room, for instance, i became attuned to the feeling the space and workers imbued. knowing break times help tired workers rest and recuperate from their heavy workloads, i was careful not to encroach on their space and ask too much. i learned to pick up on cues about their receptivity and engagement, and adjusted how i responded to them in those spaces. there were countless times i put the research project on hold or aside to sit with workers in silence or to engage on other topics. throughout the research i explicitly positioned my personal experiences, and the motivations and political commitments that underpinned my research. i allied with frontline staff, empathized with their situation, and offered to be a resource or lend a hand when i could. this helped to build trust and understanding, yet also required reflexivity over uneven and limited exchanges (wolf, ). the research also required reflexivity about power and vulnerability in the research process, especially when working with dependent seniors and marginalized workers. it necessitated continual attention to the positionality of myself and research participants, in terms of age, race, ethnicity, class, and gender, and how that shapes our differential experiences and relationships to not only the research but the broader social world. i was also continually negotiating residents demands for time, and the drive to obtain data in the time-limited confines of academic research. i also constantly navigated boundaries with residents including managing disappointment when lengths of time passed between visits, being their advocate, and doing “extras” for them, such as obtaining information and attending community events with them. the in-depth semi-structured interviews with frontline workers, management, and families identified key themes and issues from their perspectives and experiences. i include the full ambit of workers in long-term care because they are all integral to the delivery of care. reflecting the long-term care workforce, i interviewed predominately care aides, but also nurses and allied health workers (mostly recreation staff), support service workers (cleaning and dietary staff), and companions. the family members i interviewed were those who were highly involved in facility life or their loved one’s care. management included administrators and managers of care, recreation, or support service departments. for confidentiality reasons, i lump the variety of allied health and support service workers into one category (simply, allied health and support services), and management and administration into one category (simply, management). i wanted to situate myself in the facilities, and develop relationships with the people that live, work, and visit there before i pursued interviews. the relationships i built were shaped, to a large extent, by the spaces which i had access to, and frequented most. for instance, i spent far more time in the main common spaces and in the recreation department, and less time in the separated special care units (scu). the most effective way i communicated my research was interpersonally. in one facility, where staff were fragmented by different break times in separate staff rooms, and because of a rotating work schedule, i held two pizza lunches to share my research with staff. at the other facility, standard break shifts and times in a common staff room served as the avenue to share research information. interviews with workers typically were off-site, unless they requested it be done at the facility for reasons of convenience, such as on their breaks or before work. interviews with family members and management tended to be at the facility for ease. interviews lasted approximately one to one-and-a-half hours. there were a handful in the range of two or three hours. my interview schedule was iterative and evolved in response to prior comments or observation, as well as to people’s particular position. the semi-structured format attended to general themes, yet honed in on experiences, and delved deeper into novel and interesting responses. while i did not intend to conduct a focus group, the two pizza lunches served that purpose when disgruntled workers turned it into a space to share their collective concerns. while the particularity of experiences rendered confidentiality sometimes difficult, i used pseudonyms for the facilities and research participants, and broad occupational classifications (e.g. care worker instead of nurse or care aide). i also delinked the occupation from the narrative if appropriate. confidentiality was also a challenge given that a handful of staff worked in both facilities. i was told a couple of times that there were workers at mv who wanted to speak with me, yet were fearful of employer retaliation. in this regard, i was highly attentive to the contexts in which workers shared sensitive information with me (e.g. (un)safe spaces and times, who was on shift), and to any potential harmful outcomes. many workers also expressed barriers to interview participation, including having very little time because of work and family demands, or some were simply too exhausted by the end of the day. although i had aims of a more collaborative research process, i realized that time commitments, and a lack of resources and interest made it largely unfeasible in terms of workers capacities and in the short span of a graduate research project. even with this goal, it is ultimately my specifically positioned self and the dictates of academia that direct the research design and process, data interpretation and representation, and knowledge production and dissemination (wolf, ). who and what i chose to listen to or record, or what questions i asked or not, shapes what knowledge is produced. the end research product is a partial story of situated knowledges (haraway, ; rose, ). given concerns over barriers to participation, and out of a commitment to fairly pay workers for their contribution and time, an honorarium of $ an hour was provided to workers who participated in a formal interview. i did not to pay management and families, unless there would be an explicit barrier to participation, as these almost always took place on paid work time or subsequent to visits at the care facility. workers who expressed interest in or responded positively to requests for interviews tended to be those i developed closer relationships with. they tended to have long-term experience, and they were passionate about their work, or worried about its current and future state. at mv, they were outspoken worker advocates, or discontent with the downward degradation of their work and workplace. there were some workers who felt the interviews were a cathartic release, others who became frustrated and upset bringing up work-related challenges. while this may yield more extreme worker responses, it is tempered by the inclusion of family and managers’ perspectives, and my own experiences and observations. moreover, beneficial outcomes of the research may not materialize the way that workers expect they will. some workers were hopeful that i could bring forward their experiences and perspectives to politicians and policy-makers in more powerful positions. others, who thought that my research could lead to improvements in the sector, or affect change in the workplace. i attempted not to mislead about my lack of capacity and power, even as i will share the research results through a variety of channels including facility management, workers, advocates, and the general public, with the aim of contributing to advocacy ends. . care facility sites, spaces, staff, and schedules at mountain view (mv) and gracious care centre (gc) – the atmosphere, feeling, and spaces of each – are strikingly different. both are publicly subsidized facilities. mv is part of a large for-profit chain care home operator with facilities in many provinces across canada. gc is a faith-based non-profit single operator facility. mv has a more institutional and depersonalized feeling. entering the front door, the first thing a visitor encounters is a glassed-in receptionist desk, and glass-fronted management offices with closed blinds and often half-closed doors. a large dining room, newly created activity room, and a common area with couches and chairs are to one side of the main floor. unless it is mealtime, or there is a large monthly facility event, the main floor tends to not be used by residents and families. even while the décor is aesthetically pleasing and the common areas are embellished with handmade decorations made by the recreation department, the space feels bare and is quiet. upstairs, memory boxes are set on the wall outside residents’ rooms to house personal trinkets and photos, but the rooms inside have minimal personal touches. the elevator posts notices about resident satisfaction surveys, or appeals to residents not to keep herbal remedies in their room as management will be by to check. when it is mealtime, however, the common spaces on the main floor come alive. during this time, there are many family members, friends, and companions that visit, help feed, or bring food in for their loved one. two ethnically segregated groups of residents and families gather together before and after mealtimes: one chinese, the other italian. they occupy the space with their sociality, chatting and checking in with each other. compared to gc, where residents almost always eat together, those that need additional assistance with feeding stay on their floor and there is at least one care staff there to help. there are evident spatial divisions in the facility. because a code is needed to move around the floors, residents tend to stay on their own floor, and are set out around the common lounge, in their typical places. overlooking the lounge is a glassed-in nurses’ station. management is almost always in their office rather than interacting with family, residents, and staff on the floor. while management eats together in the little used activity room, frontline staff have their own small, separated staff rooms (one for care staff, one for support service staff). in the care staff room, there are no dishes, cutlery, or dish soap. instead staff bring their own supplies from home. the ceiling was also in disrepair, some furniture broken, and the couch ended up ridden with mice. organized family involvement in the facility is low. officially there are family council meetings, yet they rarely happen because of low interest. in comparison, gc is known to provide exemplary care, and is “called to serve” and carry out the healing ministry of jesus christ. gc provides holistic, compassionate care in a multicultural, homelike environment. when a visitor enters the facility they are immediately met with a bulletin board of facility events, and the common areas downstairs are often occupied in activity. aside from a dining room and lounge, there is also a chapel, large and stocked recreation department, and resident kitchen where families can use the appliances and make a meal. at mealtimes, the end of the lounge is occupied by a core group of family members, who sit together and help feed their loved ones. the space of gc pervades a home-like and comfortable feeling. many residents’ rooms are decorated with their own furnishings and pictures (one resident’s room is chock full of hoarded goods) to provide a sense of familiarity and comfort. to this end, residents are able to lock the door to their room, even if staff can get into it if they need to. staff wear plain clothing, or floral or printed scrubs to make care less hospital-like. each new resident has their picture posted in the elevator so everyone knows who they are. in the elevator and around common spaces are residents’ artwork and motivational quotes. both make the facility feel less institutional and fosters a sense of community. management and staff are warm and friendly, and stop by residents and their family members in the hallways or common areas to take a moment to check in and chat. the spaces and relations at gc create what many family members call “a place of caring”. there is an affective atmosphere that makes gc stand out from other facilities. a tight-knit group of family members, who are also on the family council, act as electrons that draw in and connect other family members and residents. pets and children (including staffs’) are often running around the care home. a large number of families, friends, and community members attend larger facility events such as the summer social and holiday feast. for the events, the rooms are festively decorated, and special treats are served. these events bring together an array of people and generations, and all involved are genuinely having fun. there is often dancing and singing, and the space pervades life and energy. gc is often busy and abuzz, and residents are often engaged and active. daily and monthly activities includes bowling, bingo, bus trips, and numerous special activities per month like birthday teas, performers, community choirs, and an annual talent show. there is a beautiful, thoughtful, and celebratory way that death is dealt with at gc. there is also much support provided to families and staff to deal with loss and bereavement. before a resident passes away, an announcement is made through the facility. staff, family, and friends are invited to gather around the bedside to share thoughts and fond memories together. this contrasts with my one encounter of institutional dealings with death at mv. at mv, residents who pass away have their picture and name printed onto a poster board displayed in the reception area. one time, i was shocked to see the picture of a man who had just passed away with seemingly little notice. later that day the picture and name were replaced on the poster board. i am told there was a mix-up, and they accidentally posted a notice of passing for a resident who was, in fact, still alive. luckily, a staff person noticed it early enough in the morning before many family members arrived. at gc, there is also a profound respect for all life, and a deeply felt humanity that is expressed in the relations and practices of care. during morning liturgy, the spiritual care leader does a peace ritual where she engages in eye contact, touch, and tells each resident “peace be with you”. “mission integration” has the unique goal of integrating the organizational mission into everyday practice. mission integration is about inclusive decision- making, spiritual and professional growth, and creating a place of work and care that exudes hope, joy, respect, love, meaning, and motivation. while residents and staff may be of any or no faith, management leans towards following the christian faith. the organization of care at both facilities is similar. care aides get residents up and ready for the day between : - am, and back to bed between and : pm. mealtimes tend to take a half hour to an hour at am and pm. because both facilities have only two elevators, it is a traffic jam of wheelchairs to and from mealtimes and activities on the main floor. the quiet times for frontline staff are typically between - pm and after pm. while the nurse tends to the medication cart, or is on the computer doing documentation work, care aides are almost always on the move, going back and forth down the halls, and into and out of rooms. weekends are noticeably quieter and more relaxed as no management are around. the care workforce is aging, highly gendered and racialized, and from immigrant backgrounds. staff average fifty years of age, and many are retiring, or will soon retire (bc care providers association (bccpa), ). overwhelmingly, long-term care is a gendered space, and restructuring is also profoundly gendered. those who live and work in residential care are predominately women. two-thirds of residents are women, as they tend to have more illness and disability, live longer, and have less access to income to pay for care (armstrong & banerjee, ). women comprise % of care and support service workers in the sector (cohen, ), and family members who provide unpaid care work for their loved one are resoundingly women. at mv, the vast majority of care and support service staff are filipino. in both facilities, this is the case especially for new and incoming staff. many came to canada under the live-in caregiver program, but have nursing backgrounds in their home country. at gc, the long-term care staff are largely south asian and filipino. in both facilities, there is a smaller number of care staff from china as well as southeast asian, central and south american, and african countries. only a handful of care, nursing, or allied health staff are men. at mv compared to gc, there are more male care and support service staff. at gc, just less than half of the management team are men. management at mv is dominated by white women, while at gc management is whiter than frontline staff but more than half are racialized. at gc, a large number of workers have been there since the day the facility opened about years ago, or are very long-term. many have moved from lower status support service and care aide positions to nursing or management positions. the permanent staff at mv, too, are relatively stable, and many of them have also been there long-term. mv has around residents, while gc has around . mv has a very large proportion of chinese mandarin or cantonese speaking residents. this makes communication a challenge for staff. gc residents have a wider array of nationalities and ethnicities, but there is a larger caucasian-european presence than at mv. there is also a substantial chinese population. because of the large resident turnover, the number of chinese residents increases each year in both facilities. there are around - and - regular staff at gc and mv respectively, excluding a large pool of casual staff. directed by the health authority’s medical model of care, which fragments whole persons into discrete parts, different departments in each facility attend to different aspects of care provision. health care assistants (hcas, or simply care aides) perform largely body or personal care, such as bathing, toileting, and feeding. licensed practical nurses (lpns) and registered nurses (rns) provide largely clinical care, such as medication management, resident assessments and documentation, as well as care aide supervision. allied health and spiritual care ensure residents’ social, emotional, cognitive, physical, and spiritual care needs. and support services workers ensure the conditions for resident health and wellness through the provision of food and hygienic living conditions the bulk of facility staff are either care staff (nurses and care aides) or support service workers (cleaning, dietary, and laundry staff). and care aides, by far, comprise the largest portion of the long-term care workforce. while the care and nursing aide hours are similar at both facilities, the number of allied health care hours (which include recreation and physiotherapy) is quite a bit higher at gc than mv. at both facilities, there are approximately an equal number of residents on the floors ( - ). each shift, there is one lpn on every floor, except that one floor has a rn instead. on the day shift, each care aide cares for an average of residents. with the new increase in funding for care aide hours across the province, this moved down from . residents. on the evening shift, care aides care for an average of or residents. on night shift, there is one care aide to care for - residents. care aides work in teams on the same floor with the same residents. at gc, they rotate from one side of the floor to the other every week to ensure fair workload distribution. . thesis structure i examine the restructuring of care in these two facilities in the following three chapters. chapter one traces and unpacks past, current, and future priorities and developments in the long- term residential care sector in b.c. and vch. it overviews local and broader interconnections in enmeshed processes of devolution, austerity, privatization, and financialization using a critical policy and feminist political economy framework. chapter two opens with a brief sketch of the literature on the reorganization of care work, as well as body work, emotional labour, and gendered bodies and subjectivities. the remainder of the chapter attends to an empirical study of labour process change from workers’ frontline experiences and perspectives. i look at how particular bodies, affects, and capacities are enrolled in restructuring processes in uneven ways and with adverse effects. chapter three examines the different institutional strategies created and deployed to exploit or buffer restructured care settings in a for-profit and a non-profit facility. i assess the uneven geographies of restructuring by attending to the constellation of strategies, actors, motivations, and relationships involved. chapter : the restructuring of b.c.’s long-term residential care sector in this chapter, i employ a feminist political economy and critical policy lens to trace and unpack past, current, and future priorities and developments in long-term residential care policy, funding, and provision. this overview focuses on b.c.-based contexts, particularly the vancouver coastal heath authority (vch), while connecting local developments to broader social, political, and economic forces and trends. this chapter looks primarily at the changes in the long-term care sector implemented by the b.c. liberal government between and , and their impacts today. it utilizes grey literature and policy documents, news and business reports, snippets of field work data, and academic literature to interrogate the following questions: what are the processes and dynamics of residential care restructuring in b.c. and vch? how are neoliberalization and the historical devaluation of social reproduction enrolled in restructuring processes? to what extent, and in what ways, are market-oriented models of care and economic rationalization integrated into residential care funding and delivery? what is the scope of privatization and contracting out in the sector? how have the private sector, and corporate and financial firms, shaped developments in residential care? and how do the dynamics and impacts of financialization compare and differ to those of privatization? . social reproduction, care, and neoliberalization care is a fundamental human necessity. all people require care, and the demands and needs of giving or receiving care fluctuate throughout the life course. despite this, as silvia federici ( ) argues, eldercare in capitalist societies is in a state of crisis because of the devaluation of reproductive work, and the largely racialized, gendered, immigrant care workforce that performs “non-productive” work on “unproductive” frail, disabled, elderly bodies. there is also tension in that, under worker-oriented and social investment welfare policies, unpaid care is considered to have no inherent worth and is construed as a burden because it impedes household labour market participation (fraser, ; mcdowell, ). because care work entails work on bodies, and contains elements of touch and emotion, it is naturalized as women’s work, further contributing to its devaluation (dyer, mcdowell & batnitzky, ; wolkowitz & warhurst, ). additionally, as pat armstrong tells it, long- term care is characterized as “…the place of last resort, and where we send people to die. so this structures the way we think, and our main idea has been how to keep people out of these facilities, rather than to see them as an integral part of a continuum of care” (in silversides, , ). in this light, long-term residential care invokes socially distancing imaginaries of not only institutionalization but also death, disease, disability, decline, and dirty work (jervis, , lawton, ). these axes of devaluation and marginalization shape how we think about and invest in care and care work, and by extension, residential care has been rendered socially and politically invisible, deprioritized, and neglected. it is argued that this is why deep austerity and rampant privatization are perpetuated with little public contestation (seeley, ) the devaluation of care has historical roots in the marginalization of social reproduction, of which care is one vital aspect. social reproduction, or the socially necessary daily and generational reproduction of people and collective social life, in western societies has been relegated to the private sphere and as the natural domain of women’s unpaid labour (green & lawson, ; laslett & brenner, ; luxton & bezanson, ). this has effectively obscured its intimate connection to wider society and economic production, and undervalued this work. to this day, paid work in the care and service sectors are highly feminized, devalued, and under-paid (duffy, ). social reproduction has traditionally been provided primarily outside of the marketplace, in the domestic sphere, or later through state and capital sponsored social welfare systems. but in the current era of neoliberal financial capitalism, state and capital have largely withdrawn from ensuring collective conditions for social reproduction (fraser, ). in effect, this has (re)privatized the responsibility and cost for social reproduction to the household, marketplace, and voluntary sector with gendered, racialized, and classed implications (bezanson, ; england, ; katz, marston & mitchell, ). the devaluation of social reproduction and care is evident in the b.c. liberal government’s approach to long-term care, which from - pushed forward and entrenched an agenda of austerity and privatization that is ongoing even today. this agenda reflects the broader trend in the neoliberalization of health and social care sectors that has occurred to varying degrees and with diverse outcomes in advanced capitalist countries, including canada (england & ward, ). the neoliberalization of b.c.’s long-term care sector is evident in restructuring processes that concurrently scale back the welfare state, and roll out privatization (peck, ). in this context, the role of states is increasingly to facilitate investment and economic growth in the interests of global capital while eroding the power of labour and sidelining social welfare concerns (bakker, ) this implications of this are that “[t]he changing sociospatial contexts of subjects involved in life’s work are shaped and constrained by the state in contemporary capitalist society, perhaps even more than ever before” (katz, marston, & mitchell, , ). the rise of individualism and market-oriented ideologies erode collectivism and enable the insertion of private markets and capital into more spheres of everyday life, including care (bakker, , ). at the same time, patterns of demographic and labour market change, including population aging and dual income-earning households, increase the demand for care (bezanson, ; luxton & bezanson, ). and a globalized market in care workers reshapes the international reproductive division of labour and the supply and demand of care work (dyer, mcdowell & batnitzky, ; kofman & raghuram, ). . devolution and austerity across canada and in b.c., long-term care funding and provision is increasingly viewed through an economic lens where “reductionist assumptions” (banerjee et al., ) and financial logics and valuations prevail (chiapello, ). this has enabled restructuring processes that narrowly define collective responsibility and restrict entitlement for care. furthermore, long-term care in canada falls outside of universal entitlements to health care services under the canada health act (banerjee, ; day, ). this results in a patchwork of long-term care service provision, funding and staffing structures, and regulations across the provinces and territories, and their regions (armstrong et al., ). it also increases the role of private markets for care- related services (armstrong & banerjee, ). increasingly, publicly funded long-term care is reorganized through new public management tenets that emphasize market-oriented and managerialist practices of competitive tendering, cost-effectiveness financing, and efficient, performance-based delivery (armstrong et al., ; armstrong, armstrong & macleod, ; baines, cunningham & fraser, ; day, ). yet critics argue that these developments are contradictory to quality conditions of work and care, and neglect the complex relational and resource-intensive nature of care (baines, ; banerjee et al., ; seeley, ). in , more than a quarter million people lived in long-term residential care in canada (armstrong & braedley, ). in , in b.c. this represented % of the senior population (office of the seniors advocate (osa), b). outsourcing service provision from the public to the non-profit, charitable, and for-profit sectors is a key characteristic of the neoliberalization of health and social care (baines, cunningham & fraser, ; day, ). while % of residential care facilities in b.c. are publicly subsidized, it is provided through a complex mix of for-profit, non-profit (including charitable and religious affiliates), as well as public operators (mcgregor et al., ). in - , the five health authorities in b.c. spent $ . billion, or % of health care expenditures, on residential care services (bellringer, ). in publicly subsidized facilities, residents pay up to % of their after tax income on the cost of accommodation and hospitality services, with a monthly maximum of $ , in (plecas, ). this compares to the median monthly cost of $ , for a private pay bed (sunlife financial, ). since , the number of long-term care beds in b.c. has not kept pace with the needs of an aging population (longhurst, ). as a result, residential care is increasingly difficult to access, and has a long waitlist. numerous reports from the b.c. office of the canadian centre for policy alternatives (ccpa) reveal a continual downward trend in access to care (cohen, ; cohen et al., ; cohen, tate & baumbush, ; longhurst, ). between and , for persons and over, access to residential care and assisted living spaces declined by %, while access to home support declined % (longhurst, ). under the b.c. liberal’s continuing care renewal plan, care provision transitioned from institutions (hospitals and residential care facilities) to private homes and less supportive forms of seniors’ housing. this plan promised to improve seniors’ care by building new long-term care beds. but closer analysis reveals that this “increase” entailed the closure of over non-profit long-term care beds between - , and their replacement in largely private, for-profit assisted living or supportive living units (hospital employees’ union (heu), ). concurrently, changes in admission criteria since tightened eligibility for residential care, restricting access. while care provision shifted to the home, home support and care hours were cut back. inadequate supports mean that seniors in need of a higher level of care have to rely on private payment for care services, or the unpaid care labour of (mostly female) family and friends. those without family or access to income become sicker and more frail, and at risk of accidents and injuries. hospitalization is often the consequence. it is also the precursor to seniors being able to obtain a higher level of care provision. yet lengthy waitlists for residential care means that seniors are often cared for in the hospital longer than is necessary, or they are sent back home without adequate supports to wait for a bed to open up. overwhelmingly, the crisis response to care needs ends up costing substantially more than if preventative supports and less intensive forms of care were in place. this not only wastes resources but creates unnecessary stress and suffering for seniors and their families (cohen, ). tightened eligibility has led to a dramatic change in the resident population over time. twenty to thirty years ago, those in residential care were more-or-less cognitively capacitated and mobile, and had minimal care needs. while residents’ care needs increased over time, they accelerated about a decade ago. increased longevity and a model of care based on “aging in place” and “keeping seniors at home” mean that people entering residential care are older and frailer, and have more complex care needs. as one manager at mv shares, these were once people “who ten to fifteen years ago you would have found sitting in hospital beds.” residents now frequently have moderate to severe cognitive impairment (often dementia-related), mental health and behavioural challenges, physical dependence, and multiple disabilities or medical conditions. because of this, most need substantial or total assistance with their activities of daily living (grooming, dressing, washing, eating, toileting, etc.) (kary, ; plecas, ). the average resident age is years, and % of residents are over (osa, ). residential care is now informally characterized as dementia and palliative care. sixty- three percent of residents have a diagnosis of dementia. “palliating in place” is a key goal, and end-of-life care is a common feature in long-term care (cohen, tate & baumbusch, ; osa, ). the current average resident length of stay is less than one year and three months (osa, a), and care home managers claim that over one-quarter of the resident population passes away each year. in one of my facility field sites, seven residents passed away in a very short span of time, equating to a loss of almost % of the entire resident population. with people now entering residential care in such an advanced state of cognitive and functional decline, their transition into care is more difficult, and they have a harder time engaging with, and settling into their surroundings. furthermore, a faster resident turnover has implications for workers’ emotional wellness, as well as building long-term relationships and knowledge of residents. compared to the acute sector, funding, equipment, and supplies in long-term care are wanting. as the complexity of the resident population continues to rise, care facilities have not seen a corresponding increase in funding, staffing, and training to adequately meet these needs (cohen, tate & baumbush, ; kary, ). moreover, a recent ccpa report shows austerity trends in seniors’ care in b.c. between - , per capita expenditures for residential care for seniors over dropped by more than %, placing b.c. “dead last by a huge margin” amongst the provinces (lee, ). austerity measures in social and health care is the result of devolved responsibility and shrinking funding transfers from federal to provincial, regional, and municipal levels. it is also the result of regressive provincial tax cuts that led to a loss of $ . billion in public revenue from to (longhurst, ). as a result of underfunding, the seniors advocate report shows that % of b.c.'s publicly subsidized residential care facilities fail to meet the government's minimum staffing guidelines of . hours of direct care per resident per day (bcgeu, ). comparing public to privately owned and operated contractor facilities (both for-profit and non-profit), % versus the respective % meet or exceed minimum staffing level guidelines. beyond underfunding, this signals a lack of funding parity between facility ownership type (kary, ; osa, ). to offset a legacy of liberal government austerity, the b.c. new democratic party (ndp) last year announced an investment of $ million over three years in seniors’ care. much of this funding is earmarked for additional care aide hours in residential care to bring facilities up to an average of . care and nursing hours per resident each day. this combined with allied health (recreation, occupational, and physical therapy, etc.) hours will reach the goal of . direct care hours. while this is a much-needed investment, some advocates believe this is still bare bones. given the current level of nursing and care hours in facilities, this translates to only an average increase of minutes of care per day (culbert, ). this also compares to other countries, like sweden, who have invested in . hours of direct care and have double the number of facility care staff compared to the canadian average (armstrong et al., ). many feel three hours is not enough considering the extent of resident care needs. the classification of direct care hours, too, has been critiqued as an overstatement (armstrong et al., ). this is because lpn and rn hours are included in the . hours of direct care, yet they tend not to in sum, this is because the health authorities expect contracted facilities to put forth some of the costs associated with long-term care operations. this is further explained in chapter three at the start of the section on gc’s fundraising strategies. provide hands-on care but rather documentation and medication management (givetash, ). additionally, advocates point out this investment disproportionately advantages for-profit facilities as they typically have the lowest care aide hours. there is also concern that increasing funding without subsequent accountability measures could see investments funneled into profits rather than staffing. for example, there is currently no way to track if facilities are replacing their additional care aide hours when staff call in sick or are on vacation (culbert, ). sectoral underfunding has created deficits in care home operating budgets, posing risks to debt and facility closures (cohen, tate & baumbush, ). in this context, unionized wages and benefits are made “unsustainable”. facilities face pressure to rein in costs by reducing staffing levels, and contracting out care and support services to remain viable (heu, ). to reduce labour and benefit costs, casual and part-time work is endemic across the sector (over % of the workforce) (armstrong et al., ). many workers piece together multiple jobs, making it difficult to juggle work demands and home life (armstrong et al., ). there has also been a downward trend in wages and benefits across the sector over time, with workers in private facilities and contracted out departments typically hardest hit. the hospital employees’ union (heu) reveals there is typically a % loss in what a care aide would earn in a public versus private care facility (givetash, ). the vast majority of long-term care facilities in b.c. are unionized, which is associated with better wages, benefits, job security, and work conditions compared to non-unionized workers (armstrong et al., ). most long-term care workers fall under the health employers association of bc’s (heabc) master agreement that sets standard wages and benefits for over publicly-funded health care employers across b.c. yet operators, typically for-profits, can exempt themselves from heabc processes or contract out the work to circumvent these set wages and benefits. even under the master agreement, workers’ wages and benefits have been eroded. in response to a job action initiated by heu members over the threat of contracting out, the b.c. liberal’s implemented back-to-work legislation to end the protest, and issued an “unprecedented” % pay cut for health care workers (armstrong & hume, ). while this pay cut occurred nearly years ago, workers state it is only now that they are getting back to the wage they were previously at. the provincial government and health authorities have staffing level and skill mix guidelines. this outlines a particular ratio of registered nurses (rns), licensed practical nurses (lpns), and health care assistants (hcas) depending on the shift and facility size. in the mid s, to reduce labour costs, reclassification occurred and work was downloaded from higher to lower paid and skilled workers, while the work was also becoming more complex (seeley, ). rns began to be replaced with lpns, and lpns were reskilled to do nearly the same scope of work of rns. this includes medically complex care tasks such as inserting feeding tubes, dressing wounds, giving out medications and intermuscular injections, and undertaking medical assessments. hcas’ scope of work, too, has extended into wider arenas. hcas provide palliative care, do some documentation, and some dispense medications. to save costs by shifting more work from lpns to hcas, employers often require hcas to have a certificate of medication administration. workers generally bear the costs of training. this poses barriers to certification for those who cannot afford it, typically newer immigrants in poorer paying care work. while the responsibilities and skills of hcas and lpns widen, their wages and much of their training have not correspondingly increased. subsequent to problems that sprung up from reclassification, cutbacks, and contracting out, the b.c. liberals implemented the bc care aide and community health worker registry. this increasing credentialization individualizes responsibility and puts the onus on workers to ensure quality care under deteriorating conditions. . privatization privatization has become the solution to state deprioritization of care, and is encouraged through legal, policy, and regulatory changes. privatization has gained traction through discourses of unsustainable health care costs amidst a “grey tsunami” of population aging, fiscal crisis, and debt reduction. it is also bolstered by the neoliberal notion that privatization creates more competition, choice, and efficiency. at the same time, this also legitimizes cuts to public expenditures and a reduced role for the state (armstrong & armstrong, ; armstrong, armstrong & macleod, ; armstrong & braedley, ). in the current political economic climate, economic growth and business interests have sidelined social welfare concerns and collective public interests (aronson & neysmith, ; cohen & cohen, ; day, ). consequently, heu's secretary-business manager jennifer whiteside notes, “‘there's been a shift in the last years that has really tipped the scale in favour of the private sector without any kind of debate publicly about how it is we want to be delivering care to seniors.’" (in abassi, ). sectoral underfunding would logically repel private investments. yet privatization has been encouraged by facility assets and development potentials, and the ability to change subsidized beds into higher paying private pay beds. privatization is bolstered by a lack of enforceable staffing and quality care standards, poor government oversight, and the unrestricted ability to contract out work and drive down wages and benefits (heu, ; longhurst, ). in canada, in , for-profits accounted for % of publicly funded residential care facilities, placing it somewhere in the middle of norway ( %) and the united states (us) ( %). the top for-profit care operators in canada acquired rates of profit from % to %, with the latter figure being far greater than in for-profit operations in the us, united kingdom (uk), sweden, and norway (which averaged around %) (harrington et al., ). in b.c., long-term care is delivered in almost equal parts by non-profit, public, and for-profit operators. yet there is a rising trend of public funding going to for-profit care home operators and service providers. between and , the number of beds in for-profit facilities increased by % at the same time as they decreased by % in non-profit and public facilities (longhurst, ). privatization in residential care has been facilitated by new public management policy changes in the late s and in that ended direct capital funding grants for non-profit operators. over % of the net residential bed closures between and occurred in non-profit facilities. this is, in part, because they cannot access sufficient capital to support necessary renovations, and most end up being replaced by newly built for-profit facilities (cohen et al., ). in one recent example, one large private, for-profit facility will be built to replace two older public facilities on b.c.’s sunshine coast. this decision was made despite a lack of community consultation by the health authority, and ample community opposition to the private provision of care. in the transition from public to private operations, there is concern that facility staff are at risk of either losing their jobs or facing a $ an hour cut to their wages (garvey, ; heu, ). at the same time, request-for-proposal (rfp) bids for new publicly- funded residential care facilities and beds were established on a competitive basis. these changes favour large private operators because of their ability to lower bids and leverage capital in the context of high land and building costs. the “government expects a public-private partnership [p ] approach to be used to develop new capacity for residential care beds” (plecas, ). while not technically a p , the recently announced pearson dogwood redevelopment project is premised on a unique public- private hybrid. in this development project, vch sold off almost the entirety of its acres of pearson dogwood lands to major real estate development company onni group. onni group will develop the land into a mixed-use community with commercial, retail, park, and health care space, as well as market rate and supported housing units, worth an estimated $ billion. vch claims all income generated from the sale of this public asset will be re-invested into health care (o’brien, ; o’connor, ), yet this claim is difficult to substantiate. onni will rebuild or replace two of vch’s residential care facilities. the george pearson centre, which houses residents with complex medical and physical conditions, will be closed and its residents integrated into market housing in independent living or group home units with supports. the corporatization of residential care has been entrenched with the end to direct capital funding grants and the establishment of competitive rfps. private care home owners and operators increasingly consist of large chain corporations, sometimes associated with major financial firms. there has been a simultaneous decrease of small family-run, or single operator facilities (bccpa, ; cohen, tate & baumbush, ; heu, ; longhurst, ; kary, ; mcgregor et al., ). this mirrors developments in residential care across canada, where in , the top five chains owned % of beds and % of care facilities (harrington et al., ). corporate consolidation is also evident in vch’s recent residential care rejuvenation plan. this entails the largest residential care bed development in years, worth $ million over years. out of a total of beds (with only of these being new beds), for-profit chain operators won six out of eight bids to build or extend care facilities to house these beds (heu, b). for-profit chain companies reconfigure the scale and spaces of care because of their tendency to build and remodel facilities in large institutional style (burns et al., ). while this allows them to maximize economies of scale, it impacts residents’ quality of life. large care facilities tend to feel less home-like, and often there are fewer common spaces for residents, families, and friends to interact. similarly, amy horton ( ) found that financialized care chains create care facilities in a hotel-like fashion, with aesthetically pleasing yet often underused or inappropriate spaces. their focus on the visual surface of facilities comes at the expense of investment in new equipment, additional staffing, or training. and in b.c., for-profit chain facilities typically have a larger number of residents than non-profit facilities, with many housing residents or more (osa, ). the private sector operates under the narrative that they can innovate and improve care services while increasing efficiency and reducing costs. while they provide a much needed influx of funds to the care sector, this is only needed because of government disinvestment. moreover, their actions are directed under the imperatives of profit maximization, which is inversely linked to quality conditions of work and care. heu’s jennifer whiteside argues that the profit motive “‘…puts subsidized home units and care home beds at risk whenever private, for-profit companies believe they can increase profits by marketing these services privately – or cash in on rising real estate prices’” (in stueck, ). the transfer to or expansion of private pay beds is one profit-generating tactic (harrington et al., ). for-profit operators typically have higher numbers of private pay beds because they are able to charge substantially more for them. private pay beds also align with health authority interests because it transfers financial responsibility for care to the resident. a case in point is retirement concepts’ recent terraces assisted living debacle. in this private, for-profit operated facility, twenty seniors in publicly subsidized units were given eviction notices to make way for higher paying private pay units. terraces claims that they terminated their contract with vch for these subsidized beds because public funding has not kept up with inflation and facility costs. but there is the underlying motive that private pay units start at $ , a month, while subsidized units are limited to charging residents % of their income. critics argue this allows retirement concepts to cash in on inflated real estate values in the metro vancouver area, where more people are expected to sell off their homes to pay the high cost of private care. after much public shaming the eviction notices were extended for two years to give residents the opportunity to find alternative housing and care (lazaruk, ; stueck, ). however, finding other arrangements is no easy feat, and eviction and resettlement creates worry, stress, and health risks for seniors. what this situation reveals, is a new regime of financialized welfare. on one hand, individuals are charged with taking on the responsibilities, costs, and risks associated with the private purchasing of care services. on the other hand, financial strategies, including property assets and mortgages, allow individuals to save, borrow, and invest for their care needs (langley ; roberts, ). financialized welfare is also evident in vch’s residential care rejuvenation plan. in vancouver and north vancouver, approximately one-quarter of newly built or revamped residential care beds will be private pay (vancouver coastal health, ). this move hinges on the notion of financialized subjects willing and able to extract cash out of their million-dollar home, and invest in private pay care. yet private payment for care creates an inequitable two-tier system where access is mediated by ability to pay. this poses particular problems for older women, who are more likely to need care but are disadvantaged by income, pension entitlements, and retirement benefits (seeley, ). as private payment circumvents lengthy publicly subsidized waitlists for residential care, people in desperate situations may opt to pay privately for a bed in order to access care sooner. once they have accessed, or depleted their finances on, private pay care, they can switch to the waitlist for a subsidized bed, albeit with the secure position of being in the care system. while the government encourages private actors to enter or increase their market share in seniors’ care, there are a myriad of accountability and transparency issues associated with private for-profit operations. increased sectoral reliance on private operators to provide a large number of publicly subsidized care beds creates an imbalance of power where operators gain substantial leverage and are able to negotiate care bed prices with health authorities on terms that best suit them. as seen at terraces, the operator can threaten to terminate their contracts otherwise. given this dependence, health authorities are also constrained in their ability to end contracts and find alternatives for residents and staff in facilities that have quality of care or work issues (harrington et al., ). while huge sums of public money fund private businesses and large corporations, and subsidize their profit-making endeavours, there are no requirements for them to share the contracts they are awarded or publicly report on their finances and revenues. there is also little government oversight of contracted facility operations and finances. one union official shared that from information obtained from the health authority on auditing practices in the residential care sector, only once did it appear that substantial auditing was undertaken. this took place as a result of the neglectful death of a resident, and other instances of abuse at beacon hill villa, a facility also owned by retirement concepts (sandborn, ). to obtain information on the value of subcontracted support services contracts in hospitals and long-term care facilities, heu is forced to file costly foi requests (heu, ). this poses challenges for the public to understand how decisions over the delivery of care is made, or to compare the quality of work and care across different care facilities. this has implications for families looking for best care options. . contracting out contracting out in long-term residential care is the practice of a facility operator employing a third-party private, for-profit company to deliver a service such as laundry, food, cleaning, or care rather than having it delivered in-house. contracting out not only enables short- term savings, but also shifts responsibility for service provision and staff management from the facility operator to an external operator. it allows facility operators to evade obligations for working conditions and workers’ rights and entitlements, and also externalize risks and liabilities (zuberi, a). subcontractors hold contracts for delimited sums of money and timeframes, preventing operators from going over-budget on service provision. because they also need to ensure profits on limited-sum contracts, subcontractor companies are associated with worse wages, benefits, and work conditions. contracting out is promoted through the liberal government’s health and social services delivery act (bill ) and the health sector partnership agreement act (bill ). these developments signaled the intensification and entrenchment of the neoliberalization of health and social care services in b.c. this was “the most sweeping privatization…in canadian history” (stinson, pollak & cohen, , ). it drastically restructured health support service delivery in residential care facilities and hospitals. bill and are anti-union legislation that have driven down labour costs and bolstered capital accumulation by eroding employment rights and protections, work terms and conditions, and wages and benefits in health and social care sectors (armstrong & armstrong, ). they opened a new market for care and support services, and a handful of for-profit service providers emerged in their wake. the b.c. liberals pursuit of contracting out in health care was legitimized by discourses of unsustainable costs and representations of health care support service work (cleaning, dietary, and laundry services) as overcompensated unskilled work. containing health care costs was premised on relocating support work in health care from “vital” to “non-essential”, and drove down the wages and work conditions of support workers (cohen, ). yet this obscured the training and skill involved in working in high risk health care settings, and masked the centrality of this work to quality patient care (zuberi, b). such degradation was enabled because it affected a marginalized workforce comprised of older, racialized, and immigrant women with limited labour market options and opportunities (cohen & cohen, ). bill removed “key job security, pay equity and contracting-out provisions” in the collective agreements of residential care and hospital support service, maintenance, and security workers (longhurst, , ). it also allowed service contracts to be terminated and re-tendered with only days’ notice. contracting out fragmented the sectoral bargaining process, because workers who still have union representation have to bargain with their individual employers instead of as part of the heabc. in this position, unions are weakened and lose leverage to advance workers’ rights and work conditions. multinational corporations aramark, sodexo, acciona, and compass are the beneficiaries of bill , to the detriment of over , workers who lost their jobs (heu, ). laid off support service workers who were rehired by these corporate contractors had their wages cut nearly in half and their benefits slashed (cohen & cohen, ; stinson, pollak & cohen, ). the money saved was funneled to into corporate profit, where these four companies posted profits that totaled over three billion dollars in (heu, ). this deliberate policy choice created needless quality of care concerns, including hygiene issues, infection outbreaks, and patient deaths (cohen & cohen, ). these developments drew on and entrenched segmented labor markets, and came at the expense of workers’ lives and livelihoods. in , the health sector partnership agreement act (bill ) followed bill . bill enabled the contracting out care, nursing, and recreation therapy work in private, for-profit and non-profit contracted facilities. it also eliminated successorship rights for unionized workers. this means if a facility is sold, or a subcontractor transfers or terminates its contract, union representation and collective agreements are void. staff are then laid off and re-hired by a new operator or subcontractor, and a different contract, keeping wages and benefits low. “contract- flipping” has become a rampant practice because each iteration of contracting out allows for the termination of union successorship rights, dismantles collective agreements, and continually depresses workers’ wages, benefits, and work conditions (cohen & cohen, ; heu, ). to this end, a handful of for-profit facilities have contracted out their departments numerous times, amplifying job insecurity. contracting out creates vast variation in wages, benefits, entitlements, hours, job security, work conditions, and unionization. this has resulted in a tier- ranking of subcontractor companies depending on their treatment of workers. privatization and capital accumulation have crept into public and non-profit facilities in covert and complicated ways. contracting out has become widespread within b.c.’s long-term care sector, particularly on vancouver island and the lower mainland (heu, a; heu, ). while contracting out has been pursued primarily in for-profit facilities for profit-making ends, it has also become a tactic to manage sectoral austerity in public and non-profit facilities. by , across b.c., heu found that care was contracted out in thirty-nine, or % of care facilities. dietary, laundry and/or cleaning services were contracted out in or % of care facilities ( ). the senior advocate’s directory of residential care facilities in b.c. shows that under vch, % of for-profit facilities, % of non-profit facilities, and % of public facilities have contracted out food services (osa, a). while the public and non-profit rates may seem shocking, sodexo was awarded the food services contract for vch and providence facilities (providence owns and operates five of the seven non-profit facilities that contract out food services). yet evaluating which facilities have contracted out care or support services is a major challenge. there is no monitoring or required reporting of contracting out aside from the seniors advocate’s directory, and this only reports whether or not food services are provided by an outside contractor. there are also no regulations that require facility operators to communicate or consult with workers or residents and their families when they make operational changes, such as contracting out, that impact the quality of care (abassi, ). distinct principles are assumed to underwrite operations in for-profit, non-profit, and public institutions. in for-profit operations, the aim is to maximize profit for the benefit of investors and shareholders. this means privatization and contracting out privilege the generation of short-term, high-value returns, which often undermines the interests of workers, residents, and their families. whereas in non-profit and public operations, revenues are typically reinvested into the facility and service provision to the benefit of residents and workers (ronald, mcgregor, harrington, pollock & lexchin, ). while the b.c. government enables privatization, research routinely shows that private, for-profit care facilities and contracted out services provide inferior quality conditions of work and care. these findings are consistent across a variety of contexts and countries including the us, uk, and australia (ronald et al., ; mcgregor et al., ; mcgregor, cohen & mcgrail, ). in a meta-analysis of studies which compared the quality of care in for-profit versus non-profit care homes internationally, studies found statistically significant results of higher quality care indicators in non-profits. this included more and higher quality staffing, and lower prevalence of pressure ulcers for residents. in contrast, only three studies favoured for-profits, while studies were statistically inconclusive (comondore et al., ). for-profits are linked to higher staff turnover and discontinuity of care, more quality violations, and workplace injuries (cohen, ; harrington et al., ; longhurst, ; ronald et al., ; silversides, ). another b.c.-based study (mcgregor et al., ) found that non-profits, compared to for- profits, had an average increase of minutes of direct care. another b.c.-based study found a significantly higher number of nursing hours per resident per day in publicly operated facilities (mcgregor et al., ). higher levels of care and nursing staff, more likely in non-profit and public facilities, are associated with “reduced resident time in bed, improved feeding assistance, incontinence care, exercise and repositioning” (ronald et al., , ). in contrast, understaffing is linked to higher rates of incontinence, falls, and aggression among residents (seeley, ). moreover, for-profit facilities are associated with poorer resident health outcomes and higher hospital admission rates, including for pneumonia, anemia, and dehydration (mcgregor et al., ). because for-profits send residents to the hospital more often and for less severe circumstances compared to other facility types, it can be posited that they externalize high care costs. as a consequence, taxpayers often end up paying more for for-profit care when both direct and indirect costs are accounted for. it is important to note that these are tendencies, and that the association between privatization and quality of care is neither uniform nor straightforward. some non-profit and public facilities, especially in rationed funding contexts, may operate under the similar market logics of cost reduction and efficiency that erode quality care and work. however, as a generalization, studies that compare ownership type typically find better quality care indicators and outcomes in non-profit and particularly public facilities, and for-profit facilities typically show the worst of all alternatives (ronald et al., ). . financialization many scholars today see the dominant mode of capital accumulation as financialization, where value is accrued through primarily financial markets and means (french, leyshon & wainwright, ; harvey, ). financialization also signifies the growing prominence and power of financial institutions, logics, values, calculations, and technologies in both political economies and everyday social life (hall, ). financial firms and ventures, small and large, local, national, and international are involved in the financing, building, owning, and managing of long-term residential care in canada. these include real estate investment trusts (reits), private equity ventures, and pension funds. like privatization, financialization is encouraged as governments renege their responsibility for care provision. financial sector involvement grows under increasing market opportunities and rising demand for care, and to cash in on growing waitlists, a lack of competition, and stable public funding. as amy horton notes, it is crucial to tease apart the differences and similarities of the dynamics, practices, and outcomes of financialization and privatization. the key distinction here is how value is extracted and realized ( ). privatization ensures profit maximization in large part by intensifying labour productivity, and cutting labour costs. in contrast, financialization is driven and sustained by high return potentials based on financial engineering and high risk activities. for financial firms involved in long-term care, money is funnelled into complex corporate structures and tax loopholes; acquisitions are enabled through tax deductible, low interest debt financing; facilities are bought and sold as property assets in high-growth real estate markets; and sale-and-release-back arrangements separate the ownership of property assets from care operations to inflate and extract high rent and debt payments from operators (burns et al., ; harrington et al., ; horton, ). high risk and high return financial activities should not be applied to fundamental welfare services such as seniors’ care (burns et al., ). financial firms are “adept at taking money out (cash extraction) and prone to recurrent crisis” because they habitually buy and sell facility assets using “debt leveraged buyouts” (burns et al., , ). this inflates facility prices and indebts the chain because revenue cannot cover the cost of financing. to maximize returns, facility ownership changes are frequent, and acquisitions and mergers are pursued to increase market share (harrington et al., ). financial firms, many foreign-based, own a large portion of assisted living, independent living, memory (dementia) care, and residential care facilities across canada. in one example, in , health care reit inc., now welltower reit, one of the largest us-based reits, became joint venture investment partners with revera inc. revera is canada’s second largest provider of seniors’ care, with more than $ billion in assets and properties in high growth real estate markets in canada, the uk, and the us (harrington et al., ; revera key facts, n.d.). major acquisitions of other facility chains were enabled through welltower’s strategic leveraging of capital. welltower is now the second largest owner of seniors’ retirement and care facilities in canada with properties. they own % of health lease reit as well as % of revera, % sunrise senior services, and % of chartwell’s facilities (baena, ). investing in health care reits is deemed to be a relatively safe, stable, and productive investment in uncertain, stagnant, and volatile economies (lerner, ; persinos, ). this is also because, in advanced capitalist countries, seniors’ care services are fundamental to how societies and economies operate. global investors flood canadian seniors’ care markets, with the effect of increasing prices relative to profits. at the same time, the rate of return for investors “remains significantly higher” in seniors’ housing than “high-end apartments”, and as “reits drive for growth, they buy regardless” (korstrom, ). pwc and urban land institute’s report ( ) on canada’s real estate trends score seniors housing an “expected best bet for ”. a scan of welltower’s annual corporate report ( ) as well as online information on health care reits illuminates the ample interest that financial firms have in investing in the “growth potential” of a “silver economy”. a fragmented seniors’ care sector possesses plenty of potential for acquisitions and growth, especially as health care is devolved to lower cost settings and in high growth markets. investors can capitalize on the combination of increased longevity, consumption-orientation, and buying power of today’s older adults. a rise in incurable dementia- related diseases can be construed as a tremendous opportunity to create and market innovative services, products, and accommodations, including memory care (persinos, ; welltower, ). investment portfolios are transformed to diversify assets and risks. this means shifting to profitable private pay models, and investing in independent or assisted living housing while divesting from publicly funded, tightly regulated residential care (harrington et al., ). longhurst points out that the b.c. government has “enabled a model in which public funding subsidizes the real estate acquisitions of private investors” ( , ). the buying and selling of care home assets to exploit inflated real estate prices is evident in the sale of b.c.’s retirement concepts, where ceo azim jamal cashed in for $ billion. in this hotly contested case, anbang insurance group co. ltd., a $ -billion-dollar chinese investment firm bought out retirement concepts’ seniors’ care homes (willcocks, ). retirement concepts is the largest and highest-paid private provider of residential care and assisted-living services in b.c. they control % of contracted care beds, and collected almost $ million in public funding in - . there are over , workers, , residential care residents, and assisted living residents in these facilities (heu, ; hunter, ). despite significant concerns, including anbang’s unsustainable global spending spree, its ambiguous ownership structure and association with the chinese state, and a myriad of issues related to foreign ownership, the federal and provincial governments quickly approved the sale (butler, ; heu, ; mcgregor & ronald, ; willcocks, ). this decision was made with little concern to the costs, benefits, and risks to those who live and work in the facilities, or to canada and canadians as a whole. anbang’s investments span asset management, finance, and leasing (wells, ). in , they bought the four bentall towers in downtown vancouver. the purchase of retirement concepts is their first foray into seniors’ care. to critics, this purchase reveals an underlying motive: it is not about a commitment to seniors’ care, but “a recent trend that has emerged…with chinese private equity firm buying up seniors’ care facilities and health care assets in an attempt to move large sums of capital abroad and out of the chinese market” (butler, ). one union advocate shares that after having done a land value assessment on the purchased facilities, her estimate found the actual land values to be worth around about a quarter of the $ billion sale price, and is confused over the mechanisms that underwrite this extreme inflation of facility property values. it was expected that anbang would follow the sale-and-lease-back arrangement with the properties being leased back to retirement concepts, who would continue to operate the care facilities (butler, ; sinclair & trew, ). yet this risky arrangement is what led to the bankruptcy of the uk’s southern cross care facility chain (horton, ). retirement concepts claims it will continue to manage the day-to-day operations and that no change will be made to staffing and quality of care. yet the lack of provincially enforceable standards and poor regulatory mechanisms cannot guarantee this (sinclair & trew, ). furthermore, there are regulatory and accountability issues associated with foreign ownership because trade agreements (like the foreign investment promotion and protection agreement) become entangled with b.c.’s care sector. in this regard, investor rights clauses pose major barriers to making improvements to care provision and work conditions. this is because they can be construed as a loss of revenue and investment value, which are challengeable under some trade agreements (sinclair & trew, ). recent developments in the anbang sale reveal an uncertain future. in the chinese state’s latest anti-corruption blitz, anbang’s chairman wu xiaohui was sentenced to eighteen years in prison for economic crimes, including $ billion in fraud and embezzlement (bloomberg news, ). in february , a chinese government regulator took control of anbang’s assets, including retirement concepts facilities, giving itself two years to manage its assets and reign in debt. it is highly uncertain what will happen to work and care in these facilities. there is widespread concern that operational cuts, contracting out, or divestment of company assets will be strategies undertaken to deal with the debt (heu, ). recent reports reveal that chinese government regulators are currently reviewing and initiating divestments of anbang’s overseas assets worth $ billion in order to manage debt and bring capital back to china (chatterjee & zhu, ). while no action plan has been initiated as of yet to deal with this issue, unions and advocates are urging the province to adopt one. they would like to see the government assess the case for publicly purchasing these facilities, place a moratorium on contracting out, and expand oversight mechanisms to ensure the quality and continuity of care and work (heu, ). financial instability, crisis, and collapse are not anomalous outcomes but rather structural dynamics of financial markets and tactics. this is largely a result of tendencies towards excessive debts and interest payments, frequent acquisitions and liquidations, and inflated asset prices that leaves “care operators and landlords with huge liabilities that have crippled the sector for years” (horton, , ). as harrington et al. show, “where financial risks are limited, there is an incentive for…risk-taking” ( , ). a high risk combination of sale-and-lease- back arrangements, rapid debt-financed growth, falling occupancy rates, and reductions in public funding contributed to the collapse of the southern cross care facility chain. five years before this, southern cross was owned by a giant global private equity firm, blackstone, which rapidly expanded its care facility portfolio before selling them off at an inflated price. blackstone extracted a profit of £ million through this and other forms of financial engineering. yet the sale combined with a variety of aforementioned factors, left the facility operations in a weak and unstable state. the bankruptcy affected facilities, , residents, and , workers. it led to widespread quality of care and work concerns, and left taxpayers and individual investors to pay the price, while blackstone was cleared of responsibility (burns et al., ; ford, ). frequent ownership changes enable each seller to make a profit from a debt-financed buyer, which burdens the care operator with more debt, even as asset valuations fall. horton highlights how in , four seasons “was sold to investors for £ . billion, which was times the company’s earnings” ( , ). “when it was acquired by new owners seven years later, the company’s value had fallen by more than per cent; terra firma paid only times the company’s earnings” (horton, , ). yet, by , four seasons’ debt load reached £ . billion (horton, ). debt-based acquisitions led to near imminent financial collapse, and the chain’s earnings dropped substantially. this compelled debt deferment and sale, closure, or transformation to private pay arrangements of fifty of its facilities (horton, ; plimmer, ). in another case, private equity owned hc-one was created from the collapse of southern cross and is now the uk’s largest seniors’ care home chain with care facilities. in a climate of rising real estate returns and investor interest, and to release cash to pay off debt, hc-one is currently selling off the entirety of their care facilities for £ billion (horton, ). care uk, the largest private provider of publicly contracted services in the uk is “£ million in debt and is paying around £ million each year in financing costs”, rendering it on the brink of “‘being near or in default’” (horton, , ). in the us, hcr manorcare recently filed for bankruptcy with over $ . million in unpaid and deferred rent owed to its reit landlord quality care properties inc. similar to southern cross, this bankruptcy was the result of rising rent payments, funding cuts, and low occupancy rates. while manorcare’s profits fell and could not pay its rent, its former ceo was paid out a $ . million settlement for owed compensation (church, ). in this context, the implications of financialization, are enmeshed with, yet distinct from privatization and austerity. financialization also has particular consequences for long-term care workers and residents. many scholars see the source of value in financialized operations shift from labour to finance, where labour becomes marginal. yet horton ( ) argues that given the labour intensive nature of the care sector, labour still holds a key position in accumulation processes. in this sense, financialized care facilities also tend to drive down workers’ wages, degrade work conditions, and amplify job insecurity but there are higher risk financial tactics underpinning this, such as frequent facility sales and operational restructuring (horton, ). facilities that are sold or go bankrupt also create fear, insecurity, and stress for residents and workers. this also reveals the myth of the dominant idea that changes in ownership have no effect on the quality of work and care in facilities because ownership is separate from operations. . privatizing profits and socializing risks in the context of financialized, for-profit, publicly-subsidized care, burns et al. point out “the privatisation of gains and socialisation of losses” ( , ). and horton highlights how “the state has become a crucial source of value for financial actors” ( , ). this is because the risks, losses, and liabilities associated with financial investment in critical welfare infrastructure are transferred from financial actors to taxpayers, workers, residents, and their families. financial actors are able to extract profit in risky ways yet are absolved of responsibility for such practices. indebtedness, bankruptcy, and closure of care facilities results in either state intervention or bailout, or divestment of facility assets, often purchased by another (often financial) firm. crisis prone developments associated with austerity, privatization, and financialization, including the anbang debacle, provide ample evidence that the provincial and federal liberal governments’ policy priorities are not only unsustainable but cause significant risk and harm. in a striking juxtaposition, the federal government announced in may that it will buy out kinder morgan’s trans mountain pipeline. they want to ensure that this fossil fuel infrastructure – “an investment into canada’s future” – will be built, even at the minimum cost of $ . billion to taxpayers (morneau in harris, ). comparing with this buy out to the selling off of vital seniors’ care services highlights not only government’s vested interest but also what counts as a national interest and economic priority. in both the kinder morgan and anbang case, the federal government justified its purchase or sale to preserve or create jobs, expand or enhance infrastructure and public services, and secure or reassure foreign investors (harris, ). yet analysts resoundingly claim that these government rationales and decisions make no economic sense (link, ). in reality, the risks and costs disproportionately outweigh any benefits, and there is no guarantee of investment in sustainable, good paying jobs or improvements to service provision (chase & hunter, ; wells, ). these developments reflect katz’s ( ) argument about the contradictory and uneven geographies of state (dis)investment and (under)development, and how this speaks volumes about processes of valuation, and of futures envisioned and materially produced. in the case of seniors’ care, the state has shed its responsibility, ceded to the private and financial sector an ever more prominent role, and opened up investment potentials for global capital. despite long- term care being an essential publicly funded welfare service, public accountability, transparency, and control over service provision has been eroded. the risks and costs associated with austerity, privatization, and financialization have been shifted to taxpayers, workers, residents, and their families while the private and financial sector have made ample gains. chapter : embodied labour and care work reorganization this chapter looks at how restructuring reorganizes the everyday conditions of work, and the practices and relationships of care in a for-profit and a non-profit care facility. i look at frontline workers’ experiences of change at work, and in the labour process, and how these relate to sectoral and workplace restructuring. in this chapter i ask: how is restructuring embodied and lived out in frontline work? in what ways is restructuring effected through and effecting of care workers’ bodies, and mental and emotional energies and capacities? relatedly, how does it impact residents’ quality of care, and workers’ view of their work and themselves as workers? how are workers able to work within and rework constrained care settings? how do the embodied impacts of restructuring seep beyond the “boundaries” of work and into workers’ home and family life? lastly, how does it impact their quality of life and social reproduction? . the labour process and workers’ bodies, subjectivities, and affects given that long-term care is heavily labour intensive, labour is a key target of cost- reducing, efficiency-yielding, and profit-generating restructuring processes (armstrong & armstrong, ). while labour costs have been reduced through cuts to wages, benefits, and staffing levels (see mountain view’s (mv) strategies, chapter three), i focus here on the care labour process in the context of sectoral restructuring. in particular, i look at the similarities and particularities, as well as the embodied dimensions, of labour process rationalization and intensification in a for-profit and non-profit facility. under the predominant neoliberalized model of care, dimensions of care are decoupled, and unmeasurable social and affective relations of care are marginalized. complex processes and relations of care are reorganized and transformed into clinical, routinized, time-limited, quantifiable, outcome-oriented care tasks. at the same time, understaffing and under-resourcing make it so that care workers are constrained to provide even the basic bodily aspects of care, such as toileting, bathing, and feeding (armstrong et al., ; seeley, ). care workers’ experiential knowledge and autonomy to provide responsive and holistic care are undermined (banerjee, armstrong, daly, armstrong & braedley, ). workers are overburdened and overworked, and care provision is sped-up and rationalized akin to assembly- line processes under the scientific management of taylorism (armstrong & banerjee, ; baines, a, ; banerjee et al., ; diamond, ; lanoix, ). at the same time, residents with increasingly complex care needs require comprehensive and attentive care delivered by workers with adequate time and resources to care well (armstrong & banerjee, ; banerjee, ; silversides, ). as work conditions erode, and the quality of care suffers, workers are subject to high rates of workplace violence, injuries, and burnout (banerjee et al., ). what these contexts make clear is that restructuring processes underlying the reorganization of work and delivery of care are premised on assumptions of the disembodied subject. restructuring is enacted without considering the embodied consequences to those who live and work in residential care. what this chapter also works to uncover is the ways in which the corporeal, mental, and emotional are co-constitutive of care work. it also looks at how they are manifest under the pressures of labour rationalization and intensification, even if they are seldom or narrowly considered in policy decisions. scholarly work on care tends to dichotomously conceptualize care work as either unpaid, informal familial caregiving that emphasizes the affective and relational components or as commodified, paid care work that focuses on the physical and laborious components and overlooks emotional and social contexts (folbre & nelson, ). this is far too simple a picture. the concept of body work, or work that “takes the body as its immediate site of labour”, is utilized by critical feminist scholars to hone in on the corporeal and embodied dimensions of care work (wolkowitz, , ). this literature increasingly pays attention to the articulation of emotional labour and materiality in work on and with sentient and responsive bodies (england & dyck, ; mcdowell, ; twigg, ; twigg et al., ; wolkowitz, ). in care work, emotional labour is salient in terms of negotiating contexts of intimate touch, dealing with transgressive bodies, and hiding negative feelings. even physical care routines involve much emotional labour, relationships of trust, and embodied knowledge. in a restructured long-term care sector, it also is crucial to diffusing tension and ensuring adequate care in the face of rationalized service delivery, bureaucratic institutional organization, and the differing demands of managers, residents, and their families (mcdowell, ). while emotional labour is vital to the smooth provision of care, it is an invisible aspect of work, neither acknowledged as a skill nor accounted for in job role or remuneration (bolton, ; mcdowell, ). under new regimes of accumulation, “[w]hat are the new technologies of power and knowledge that are being brought to bear on laboring bodies?” (katz, marston, & mitchell, , ). how do workers enact, expand, and entrench restructuring through everyday work practices? what is the productive potential of affect and emotional labour in restructured care work? and how are workers’ gendered subjectivities invoked and drawn on to ensure quality care in restructured care settings? i pursue and seek to answer these questions in this and the following chapters. looking at how affect gets produced and deployed in ways that align with pro-market health care reform, ariel ducey asks “how can people be motivated to care – about their jobs, their patients, their employers – when all objective indicators suggest there is little care for them?” ( , ). she finds that biopolitical techniques, in this case, soft-skills training programs for hospital staff, draw on, nurture, and reshape workers’ identities and dispositions in ways that cushion the adverse impacts to patient care. it is productive modes of “affective modulation”, in contrast to overt forms of discipline, control, or repression, that deploy power and reproduce injustice in the service of state and capital (ducey, , ). salzinger’s ( ) work, genders in production, illuminates femininity as a produced and productive force central to global production processes. her account denaturalizes the essentialist idea that femininity is an innate trait of women that is drawn on, used up, and exploited by capital. femininity is generated through a myriad of employer and workplace practices, expectations, and discourses that devalue and position women as docile, exploitable, and cheap workers. for her, femininity is “a structure of meaning” that organizes production, recruitment and labour control practices, and shapes workers’ identities (salzinger, , ). as adkins and lury ( ) and acker ( ) argue, workers identities are key resources for capital by helping to create and maintain divisions of labour, labour market segmentation, and workplace control. embodiment is crucial to better understand the co-constitution of workers’ bodies and subjectivities. feminist theorists conceptualize embodiment as the socio-cultural and political- economic relations of power that mark, signify, or manifest through and on bodies. it is also a corporeal mode of being-in-the-world. social reproduction and feminist labour geography scholars highlights how valuations and assumptions associated with embodied social attributes, such as gender, race, class, nationality, and immigrant status, differentially divide and relegate particular bodies into “appropriate” work in care and social reproductive sectors (ferguson, ; mcdowell, batnitzky & dyer, ). attending to care as an embodied practice, lanoix ( ) draws on personal experience to articulate care as “…an embodied response that comes from a bodily encounter with another being” and which co-comprises material, relational, affective, communicative, attentive, and responsive dimensions (lanoix, , ). as previously outlined, overworked bodies and workplace violence and injury are routine in restructured care work. this is what banerjee et al. ( ) have termed “structural violence” in the organization of canada’s long-term care system. in this context, i am interested in whose bodies, lives, and livelihoods are cared for and whose are neglected or depleted as a result of restructuring processes. in this sense, how is workers’ “life instrumentalized” (huang & li, , ) in the service of capital, state, or employer? both michelle yates ( ) and melissa wright ( ) theorize that ever-increasing drives for capitalist accumulation rapidly use up, dispose of, and render workers as waste in the form of unemployment, injury, or disability. this fits in with sylvia federici’s seminal work caliban and the witch ( ) that interrogates how women’s bodies are reconceptualized, co-opted, and made productive by state and capitalist agendas. she explores how, in the transformation to capitalist work relations, the body was reduced to an orderly, controllable, industrious proletariat work-machine. in this context, “not only is work the condition and motive of existence of the body, but the need is felt to transform all bodily powers into work powers” ( ). yet can workers be rendered merely labouring bodies to be exploited and expended at the same time as their emotions and feelings are vital to the reproduction of a restructured care system? . care work: rationalized, intensified, and decontextualized care sector restructuring is put into practice through everyday workplace practices (england, ). workers narratives illuminate a steady degradation in the conditions of care work, and rising demands of care provision. every worker with a handful of years of experience relays that residents now coming into residential care have very complex and heavy care needs, and this requires a lot of time and attention. this change in the resident population is paired with systemic workload issues that makes their work very challenging. but this was not always the case. long-term staff share memories of what work and care used to look like. even as little as ten years’ prior, they recall that most residents were semi-independent, their care needs were minimal, and they could go on day trips alone or with company. because residents’ needs were not as complex, and workloads not as heavy, resident care was very different. staff had more time to engage with residents on a social and emotional level. previously, staff at gracious care centre (gc), the non-profit facility, would do fun activities with residents. they recalled tea parties and pajama parties with music and dancing. they often took mobile residents outdoors to get fresh air, go on walks, and picnic in the park. ten years’ prior, staff were also equipped to provide more one-on-one care for residents at the end of their life, or with high-needs behaviours. aruna and maryam, two long-term care staff at gc, offer an interesting glimpse of the changes to their work overtime: aruna: a long time ago we used to do activities with the residents. we used to sing songs, we used to play cards….we used to spend a lot of quality time with the resident. maryam: you [would] hold their hand, and sit with them, and listen to them….it is very important to listen to them. maryam: yeah, i listen to them, and what they have to say. but that time is no more. we cannot sit with them and listen to them. aruna: she (referring to maryam) used to go up and do manicure, and do the nails, and listen to the residents. i remember maryam, she used to spend a lot of time doing that. maryam: i want to keep them clean, you know, just like my mom. make them feel good. aruna: but there is no time now, it's too short. we don't have time to do any extra things we want to do for them. in the current context of systemic underfunding and understaffing, and residents increasing care needs, more of workers’ time is taken up providing basic care and performing essential work tasks. heightened documentation demands to ensure government accountability also mean more time is taken away from frontline care, compounding the problem. residents with physical impairments need mechanical lifts to help get them up and down onto their bed, wheelchair, toilet, or bath. residents with cognitive impairments or behavioural issues need more direction and assistance from staff. both require more staff and more time to provide care. nurses’ workloads are also increasing because of having to assess and manage medically complex care, and specially crush, administer, and monitor complicated medication regimes. even support services workers’ workload is affected. for kitchen staff, this entails specialized dietary requirements including food prepared to the needs of people with particular health concerns such as diabetes. residents are at higher risk of choking so there is more work to puree and mince food, and thicken beverages. for laundry workers, residents soil more laundry and linens. the accelerated rate of resident turnover means it takes more time for all types of workers to get to know the needs and preferences of newer residents. for allied health workers, like sofia, the “dramatic change” in the resident population, including more dementia and more wheelchairs, “means that there is more work, because the residents need more help”: for something as simple as walking to the dining room, you need more people only for that ‘cause it takes longer. trying to get everybody into bed, and to take everybody back up, trying to have everybody attend programs. previously, you just have to have a good calendar and position it in a strategic point in the facility, and residents will choose what do they want to do today. now you have to go resident by resident, not only a reminder by telling them, but portering them to the program of their choice, or whatever it is (staff now spend a good - minutes gathering residents to attend group activities) ….there has also been a decline in the cognitive abilities. that means that you are constantly trying to motivate and find ways to still run interesting programs. what do they like to do? but you need to motivate them so they are able to do what they have done all their lives. it's a way of keeping up, figuring out how to run things. in the context of understaffing, the assistance needed to meet residents’ high needs contrasts with staffs’ capacity to provide that help. there are a myriad of pertinent examples that highlight this, but the following two stand out. as i help residents to their rooms from lunch, i see -year old mary, who is hearing and sight impaired. she is confused, wheeling herself around the common area of her floor in a tizzy. she claims that the nurse went away without giving her her medications, and she was not able to get her attention because the nurse was busy rushing back and forth down the halls, attending to other matters. having to depend on others for her life essentials is immensely frustrating, especially when they are constantly occupied. she feels “helpless and stupid” to the point that she “wants to burst into tears” because the nurse was short with her rather than communicative and reassuring. in another striking example, it is evening time and there are a handful of residents and care aides waiting for the elevator to take them up to start getting ready for bed. the elevator arrives and fills up, and lili, who has advanced dementia, is left there alone. another elevator arrives and two staff, who are now off-shift, hurry into the elevator. when lili calls out to them for help, one of the workers, sounding rushed, tells her she cannot help because she does not know her room number. she instead tells lili to wait there for a care aide to come get her, but then looks at me exasperated, and mutters under her breath “but they don’t come”. as the elevator closes and lili is left there, she becomes increasingly confused and upset. i come beside her and tell her i will help her to her room. as we arrive on her floor, it is a typical scene of post- dinner rush. residents congregate around the elevator. they are dropped off from the dining room and wait for staff to take them to their room. care staff are busy moving up and down the halls, and in and out of rooms, getting residents ready for bed one at a time. when we get to her room, lili recognizes where she is and looks relieved. when i ask if there is anything she needs, she hugs me tightly and thanks me for helping her. given widespread understaffing and heavy workloads, a mismatch between tasks and time characterizes the organization of care. care and support workers describe their work as bare bones, having no time, feeling pressured, and rushing or running around. morning care routines and mealtimes are when workers are most constrained to care for a large number of residents in a short span of time. care workers’ comments on the morning care rush include: simran [gc]: “you should see us in the morning, it’s so busy from to am. we often don’t have time to go to the bathroom or get a drink.” valeria [mv]: “…you're running like chickens to do your job and be able to provide at least the essentials for them, but that is it.” anaya [gc]: “i have to run around to get people ready, that is the only way i can do it.” a typical scene of morning care in both facilities highlights how care staff work under tightly timed schedules that map tasks and regulate bodies in space and time. most care staff start work at am, but there is a morning report before they start resident care. this means they are not on the floor until : am or later, and they have to have residents down to the dining area between : am and am. tasks and departments are highly reliant on one another, and if they are not down in time, they will impact the work of dietary and cleaning staff. for care, the staff- to-resident ratio translates into each care worker providing care for eight or nine residents. this means that staff are allocated approximately ten minutes per resident for their morning care routine. a group of care aides at mv reflect on how it makes them feel to rush through morning care. current conditions make it so residents get little choice in how their care is provided and what their day looks like: camila: i go into a residents’ room, who is still sleeping, and i feel so bad! they’re just laying there, sleeping. they look so peaceful. they just want to sleep, but you have to get them up and ready. if i don’t do this, it will affect the rest of the morning schedule. jerome adds that “no one wants to be rushed like that, not even us”. that “even i need five or ten minutes to get up after the alarm goes off. imagine waking up right away and being rushed to get ready for the day? they’re old and tired. they don’t want that.” reyna ruminates “...they are not robot, they are old. no matter how hurry you want to, you can't. especially most of them have a lot of pain. pain here, pain there.” because of this, she has to be attentive and careful even while she is forced to rush care. a large proportion of residents need assistance to eat, yet understaffing and tightly timed and interdependent schedules render mealtimes rushed and organized in an assembly-line fashion. food must be prepped and ready; residents brought down; food served; residents fed; dishes cleared; dining room cleaned; and residents brought back up, toileted, and put into bed. to ensure smoothened operations, staff focus on the task at hand and scramble to get their work done in time rather than spend time to sit, chat, and connect with residents. during mealtimes, a handful of care staff are on their break, and remaining care aides are charged with more residents to feed. one care aide often rotates between feeding two, three, or four residents together at one table. when residents sit apart, they are fed in succession, and some wait twenty to thirty minutes for their turn, as their meal goes cold. because workers have much to do in so little time, the practice of feeding reveals skillful technique, attentive negotiation, and embodied knowledge. one morning at gc, as care staff are occupied in other tasks, i assist two residents who need full assistance to eat. even under a nurse’s guidance, i struggle to feed them. i become frustrated trying to navigate pureed food into their semi-closed mouths, and i end up putting more food onto their chins than into their mouths. fifteen minutes later, after making little progress, another care aide takes over. she mixes their meals into particular consistencies, moves her body around their wheelchairs, and places her arm around them for ease. she is now in a better position to assist them to intake food, and she empties their plates in no time. because care staff are overworked, high-demand residents are often seen as additional burdens they have little time or patience to deal with. during my time at gc, one floor was renowned for having a particularly difficult mix of residents who had either advanced dementia or mental health-related behavioral challenges. overtime, workers were mentally, physically, and emotionally worn out because of the mix of heavy workloads and residents’ incessant demands. it got to the point that, in the words of one care worker, “i can’t take it anymore, i’m only human.” workers are charged to care for residents who would ceaselessly repeat themselves, follow them around, or wander into other residents’ rooms. many of these residents either lost their ability to speak english, or did not speak it in the first place, creating communication barriers, additional confusion for residents, and higher demands on workers. care staff spend a lot time monitoring wandering residents, making sure they are safe, and preventing potential upsets between residents. nighttime is when residents with dementia become restless and wander, posing a particular challenge for the sole care aide on night shift who tends to nearly thirty residents. aruna, who often works night shift, describes how exhausting this shift can be. the previous night, she was on her feet all night, running back and forth, because one man was continuous wandering and another notoriously demanding lady was unable to sleep and continually pressing her call bell for assistance. an additional demand is vancouver coastal health authority’s (vch) failure to account for the actual time and staffing it takes to provide safe, quality care in their funding and staffing models. i am told by a nurse that this comes about, in part, because the standardized resident assessment system (rai-mds . ) does not capture all the socially necessary work that goes into providing care. frustrated workers share how, instead of increasing staffing and resources, vch provides educational workshops to enhance workers’ skills and strategies as an individualized solution for systemic workplace issues, including resident aggression. fung, a care worker at gc shares how this training appeals to staff to take their time with residents and ensure a comforting environment when providing care tasks such as baths. to this, fung scoffs that there is no consideration that workers are extremely limited and pressured in the time they can spend with residents given current staffing levels and care schedules. she pointed out that no amount of calming music or soothing voices, as proposed in training, would offset this. in this context, the allocated minutes to get a resident into and out of the tub, and washed and dried, is rushed rather than relaxing. this is especially the case when it takes two, three, or more staff to help one resident into their bath, as is often the case for residents with dementia who resist care or lash out at workers. another example of a laudable yet unrealistic goal is the clear program, which mv is enrolled in. the goal of the program is to reduce the inappropriate use of antipsychotic medications in b.c.’s residential care system. medication management has become the standard way to deal with challenging behaviours associated with dementia and depression in residential care. as the seniors advocate reports, % of people living in residential care are prescribed antipsychotics, yet only % are diagnosed with a psychiatric disorder. similarly, while only % are diagnosed with depression, % are prescribed antidepressants (osa, ). to address this issue, clear seeks to replace the inappropriate use of medications by providing for residents’ holistic needs. while the program offers training around person-centred care, mv care staff feel there also needs to be an increase in staffing, recreation programs, and physical activities to engage residents. this is because given the current staffing, time, and resources constraints, the program places additional demands on them and they are challenged to put goals into action. widespread sectoral underfunding undermines vch’s goal for person-centred care. health authority funding models prioritize physical and clinical over social, emotional, and spiritual dimensions of care, which is further entrenched by the narrow biomedical emphasis on seniors’ care (armstrong & banerjee, ; day, ). joy, an allied health worker, illuminates the impoverished nature of funding models that neglect the myriad facets of residents’ humanity and identity. people are not only physical bodies, she notes, but they have emotional, psychological, spiritual, and social needs, which, in turn, affect their overall health and wellness. sofia, another allied health worker, ponders what is valued in funding models. she asks, “[b]ecause their bottoms are cleaned and they're fed…that's life, that's enough?” sofia feels there is an increasing recognition and valuation of programs that support a more expansive concept of care, including recreation and music therapy. yet in a deficit long-term care system, there is a simultaneous drive to reduce costs and implement cheaper alternatives. this means that these important components of care are underfunded and under-capacitated. sofia believes the system is “not going to cut salaries from doctors or nurses, you're not going to cut the nurse position….they can cut recreation 'cause your loved one is taking the pills, is clean, has eaten.” joy speaks to the logics of visibility that shape funding priorities. take spiritual care for example, “it's very hard to measure…so many people thought it's not important”. this is the reason why she believes spiritual care is unfunded in residential care. vch’s funding model suggests how funding should be allocated. they recommend . hours of care, or the equivalent of minutes of care, be provided by a mix of allied health staff, which may include an occupational therapist, physiotherapist, recreational therapist, social worker, and dietician. a recreation department in a facility with residents is only funded . of a full time position, or four days out of the week. because of funding constraints and a lack of standards, physio, occupational, music, and recreation therapy are not consistent in care facilities. they are most often provided at paltry levels, fundraised for, or paid out of pocket. for instance, mv reported providing just above minutes of allied health care per resident per day, while gc reported over minutes. the seniors advocate found that in b.c.’s residential care system, only % of residents received physiotherapy, % received occupational therapy, and % received recreation therapy in the week before they were surveyed (osa, ). while funding is extremely limited, there is a great need for these programs because they improve mental and physical health, and can prevent and delay dementia-related illnesses. without programs to engage residents, make them feel good, and alleviate the boredom from “just sitting around”, they will decline faster. leah, an allied health worker at gc, is highly aware of the benefits. after successive rounds of physiotherapy and offering continual encouragement, she has witnessed wheelchair-bound residents regain their capacity to walk with a walker. similarly, staff and family members talk about the special influence that music has on many residents. because music activates a part of the brain that is different than judgement or cognition, people with dementia are able to connect to it. gc’s music therapist uses music, rhythm, and dance to find what “makes them come alive”. and residents are engaged: “…for that one hour they were clapping, they were laughing, and they were dancing”. . dehumanization: machine work, robot workers, assembly line care casual conversations and interviews with frontline workers about the conditions of work and care are peppered with the word human. their stories of work similarly invoke descriptions and metaphors of machine work, robot workers, and assembly-line care. these words signify a sense of profound dehumanization in the organization of care work, which neither regards nor treats workers or residents in human terms, as embodied subjects with holistic needs. the care system’s privileging of efficiencies and profits reduces workers to a cost to cut and a labouring body to work harder. it simultaneously reduces residents to a bed to fill, an object of care, and a biological body to attend to in narrow terms. workers feel they are not able to treat residents as human when they are forced to rush and manipulate them in ways that render their compliance to bare and basic care. in this regard, one care worker exclaims, “you can’t rush them, they’re not robots!” workers would like to take their time and provide more and better care, but this is not realistic under current conditions. workers, too, feel dehumanized in a context of understaffing, where they are subject to intensified workloads that expend their corporeal, mental, and emotional energies and capacities. rushed care also limits residents’ choices, desires, and participation in their care because of the extra time it entails. anaya, a care worker at gc, reflects with sadness that it is simply not feasible given current constraints. instead, “we take this ability from them, and once we take it away, they end up losing the ability for good”. she struggles with this: “we don't want to take away their independence. they've already lost so much coming into care.” in the context of low staff-to-resident ratios, maryam, a care worker at gc, shares what it is like for residents to wait around for evening care when one care staff is charged to care for over a dozen residents: so they start getting sleepy in the hallway, in the lounge area, they're half sleeping. because we are busy with the residents. so how hard it is, sleepy people, bringing in their rooms and giving them care. we keep saying, ‘open your eyes’….they start slipping down from their wheelchairs. they've been sitting in their wheelchair so long….how hard for them, for their back….they're so sleepy, because they're so weak, they want to go to bed. it's like if we got sick, we want to go to bed, right? they are a hundred or years old, right. they want to be in the bed, and they're sitting a long time in the chair, waiting for us…[that is also] why are they frustrated. because they're tired. they want to lie down. they need our hand to care. maybe somebody's [incontinence] brief is wet, maybe somebody poop in their pants. who will sit in the chair? two situations at mv starkly highlight the dehumanization of residents that result from bare care settings. in one case, a lady that did not speak english flagged me down to get my attention. clearly uncomfortable in her wheelchair, she smelled as if she had soiled herself. when i alerted a care aide of this, she matter-of-factly told me she would get to her later, during her toileting time, as she was busy with something else. in another case, during a music therapy session, i am beckoned over by a large man reclined in a wheelchair. he tells me he has to urinate. i flag down a care aide to help him, but she replies “he goes in his briefs, he’s wearing diapers”. i am mortified to tell him he cannot be helped to the toilet, and that he should go in his pants instead. because there are not enough staff to respond to spontaneous bodily needs, toileting is scheduled, and provided in assembly-line fashion. reyna, a care worker at mv, jokes that when families demand that their loved one be put immediately on the toilet, staff have to tell families that “they’re number three in line for the toilet”. while this may look like resident neglect or disregard to family members, it is the outcome of systemic issues of understaffing and workload intensification that render workers unable to meet residents needs as they arise. unfortunately, this is not easily visible to family members, and often ends up creating tension and conflict between them and workers, rather than generating the solidarity and support needed to collectively place demands on the facility management and health authority for more staffing. residents, too, share their experiences of bare and rushed care: their call bells go unanswered, or they have no one to chat with about their day. one physically dependent resident at gc is insistent that there is “no way” staff spend three hours a day with her providing care, as outlined in vch funding models. rather her time with care staff is only for a handful of minutes in the morning and again in the evening when they help her with physical care tasks, and that is it. some residents are restless spending their time sitting around and waiting because staff get them up too early for care or to mealtimes in order to manage the contradiction of too little time and too many tasks. staff do not have the time to listen to and reassure sad, anxious, or depressed residents, or keep the company of ill or palliating residents. in the case of bill, one lucid resident at mv, “one time, i was left on the toilet for three and a half hours. i kept pressing the buzzer, but no one came.” he claims, “they never come”. he feels that it takes hours after he buzzes his call bell before they get to him. he says, “i keep track now. it’s getting worse. i wait longer and longer.” luigi, who is dependent on mv’s staff to get him to and from activities and appointments complains staff are never able to get him to where he needs to be on time, and sometimes he is wholly forgotten about. when they do get him ready for the day, he is rushed through the process. they tell him, “‘hurry, put your foot in, put your foot in, hurry, hurry, hurry!’ rush, rush, rush. when they rush me like this, i get nervous and confused.” understaffing and heavy workloads erode the quality of care. in mv in particular, there are many instances of residents’ breath stinking, their clothes being soiled, or generally looking unkempt, or smelling unclean. balbir, a care worker, corroborates this: now the problem in this facility i work right now [mv], is the staff and the hours, they cut back to us. the proper care is not even enough; we are short of time. we are short of time, because we have to rush….and then after that, it's funny, some of them are not properly oral care, like you can smell the resident. once you see the resident, how filthy the sometimes, how dirty sometimes. not properly cared. joan describes her brother’s difficult transition into care at mv, where he felt “there is nothing to do, there is nowhere to go, no one to talk to”. and this makes for long and lonely days. in his initial weeks there, he substantially declined. while his doctor and facility staff labeled it as disease progression, joan felt it was in large part an outcome of the bare care environment, and rather a symptom of poor quality care. similarly, if there were enough staff, communication between staff, residents, and families would be better, and this would contribute to a higher quality of care. nenita, a care worker at mv, feels that being understaffed means little time to talk with and listen to residents and their families to understand their needs, wants, and concerns. instead of being able to get to the root of an issue, care staff are compelled to choose the quickest, easiest method on hand, often doling out more medication or calling the doctor. valeria, a care worker at mv, wishes there were more staff to be able “to talk to them [residents], to interact with them. because right now we hardly interact with them. so they are left alone sitting all day…unless there is some activities or family that comes to visit.” she connects dehumanization not only to underfunding, but also to the profit logic that extracts value from care and neglects care relationships. she argues, “this is not assembly-line care, we work with humans and have relationships with them”. for workers, bare care environments strip away workplace autonomy and erode the relational nature of the work. in this regard, workers feel reduced to robots. clara, a care worker at mv, is frustrated about this: “we've been working, running our routine like a robot”. referring to her heavy workload she pleas, “we are only humans, even machines break down!” she points out that workers are not caring for machines, or working in automated settings. to provide good care, workers have to be able to make autonomous decisions that respond to individual needs, arising issues, and unpredictable bodily rhythms. “we cannot just follow the program, right. exactly five o'clock: eat. you cannot be late!” to carry out work that is “safe and proper”, workers need to be flexible and attentive. the machine metaphor comes up most often in workers’ experiences of contracted out work. loysa, a casual nurse at gc, shares her experience at a private facility with a shockingly low staff-to-resident ratio. as a nurse, she had residents to look after. she had so much work to do in so little time, she not only routinely worked through her breaks to get her scheduled work done, but was challenged to respond to any issues that arose. this could include circumstances as serious as medication monitoring, health complications, or a resident fall. she was even told by management not to talk to the residents, because “if you start a conversation with them, they won't stop, and you don't have the time”. she laments, “i am put under so much pressure, and there is no extra time, but i can't just leave them. i have to help them and see what is going on. i can’t just walk away.” as her narrative reveals, there is no recognition of the contingent nature of working on and with vulnerable humans. residents do not respond like predictable, efficient machines implicit in the allocation of staffing and scheduling of work tasks. gian, a support service worker at gc, shares that at her previous job with a subcontractor company, the workload was that of two or three positions. to save money, they expect staff to squeeze in more work in less time. they do this by cutting back hours and keeping the workload the same, or adding tasks on to an already overloaded workday. she further explains: and your break time, they don't care! they give you so much work…it's like, when i go there the first week, so, i set a time for my break, right. so, i go and sit down in the staff room, and then in about ten minutes the staff said, ‘hey how come you're still here?’ i said, ‘i'm taking my break.’ (staff replied in a surprised voice): ‘you're taking your break? i think you better go finish your work!’ what they say is you can't finish your work [otherwise]. so i said, ‘oh okay, i'll go.’ and that's it: ten minutes….[if i] take my break i will be late…to finish. and [working] overtime, they're not going to pay you. so they give you so much work. it's your choice: do you want to finish or not? but you know, you have so much, so much, you have to finish it. if not, you can go faster. you'll work faster, push. that's why i, after a year and a half, you're already, your body, everything is like a machine keep going, you have to go….it just keeps going, keeps going. there's no time for you to slow down. no break, no slowing down….i was like oh my god, there is work like that, i didn't know how bad it could be. under assembly-line care, frontline workers routinely reflect on feeling bad or guilty that they are unable to provide what they see as good care, or assisting residents to do things they like. maryam and aruna highlight how the structural features of their work subjectively play out: maryam: it's like whatever you're [the resident] trying to say, we have no time to listen to you, you know. aruna: and they become more anxious, panicking, stressed. i feel sorry for them too, but, it's our system, they make us work like that. maryam: sometimes we have to say, ‘okay, right now i don't have time to sit and talk, but later we will sit and talk.’ but then later we don't have time either. aruna: we lie! maryam: how can you promise that? break their heart. aruna: it breaks our heart. we have to lie to them. aruna describes this further: our workload is more heavy than before. and then we feel sorry for the resident because they don't have that kind of [one-on-one] care. the last days of their life, they don't have the quality to spend with somebody. and sometimes they are alone by themselves, nobody is with them. sometimes if they have family there, the family comes. if they don't have family, who can do it? even if we want to do it, we don't have time. aruna concludes, “what's going to happen, later, when we get old? because the [healthcare] system is cutting more hours, more hours, more hours.” and maryam adds, “sometimes i think when they cut back…they think it's piece work. it's not piece work. they’re human beings.” balbir, a care worker at mv, similarly ruminates, “they’re human beings too” but the way we treat them is like “the way we treat animals”. “so, sometimes i feel sad, because i said to myself, ‘my goodness, someday i will be one of this, and i don't want to be one of this, if possible.’” valeria, a care worker at mv, echoes this in her comment that “it's really hard for residents nowadays” to be in care facilities. “even though families come to visit them, they need more, they deserve more….it's the end of their life, it should be more enjoyable. it's not just someone who will bring business.” she feels disenchanted with the current system of care: if i had a family member that needed to go there [into a care facility], i wouldn't allow it. because they don't have a really good quality of life. no time for them. all they need is someone to talk to them, or someone to, i don't know, do something nice for them, have a nice hairdo one day. to do something different, and that will make their day. if you only spend time with them, they will have a happier life. . structural violence, mental and emotional labour, and burnout health, safety, and wellness issues, including injuries and violence, are key concerns and critical priorities for workers at both mv and gc. these issues are linked to structural contexts including understaffing, under-resourcing, workload intensification, and an increasingly complex resident population. this also has implications for residents. balbir, a care worker at mv, pointed out how staffing levels on her floor were cut back to the point that there is simply not enough staff to monitor residents and provide safe care. this has contributed to an increase in resident falls, injuries, and hospitalization, sometimes with devastating damage. i learned this firsthand at mv when i was helping a resident to her room after dinner, and she wanted to lay down in bed. as care staff were occupied bringing residents back up from dinner or helping them to finish their meal, i ring her call bell so staff are notified that she needs assistance, but they can come when they are able to do so. when i left, care staff did not come quick enough. the lady struggled to get out of her chair on her own, it ended up tipping over, and she fell out and bumped her head. a care aide informed me this lady had been agitated all day and is at risk of falls. i should have kept her in the common area so staff could keep an eye on her. very concerned about the potential repercussions of a fall for this tiny, frail woman, i rush to her room. she is sprawled on the floor, conscious, but the side of her head already had a giant goose-egg. there was a nurse holding an ice pack to her head, and four care staff attending to her, taken away from their other duties. later reflecting on the situation, i realize no one communicated these essential things to me (that this lady was in an agitated state, was a fall risk, and that i should have placed her in the common area). but this is not a fault of the staff. if care staff were less overwhelmed, they would have more time to communicate and be quicker to respond to residents. later, i go to visit this lady to see if she is okay. she is so tiny lying in bed. her icepack keeps sliding off of her forehead so i stay for a while and hold it in place. it saddens me that there are too few staff to be able to spare time to sit with her and make sure she is okay. the risk of injuries in the current organization of care impacts not only residents, but increasingly frontline workers. workplace violence is an increasingly common experience for residential care workers. while resident aggression is often portrayed in a medicalized light, as the result of challenging resident behaviours, often associated with dementia, it is also an outcome of under-met care needs and the poor conditions residents live under (diamond, ). when workers rush residents through care it can exacerbate residents’ confusion, frustration, and agitation to the point where they lash out at workers. resident aggression is the second leading cause of workplace injuries for b.c. care aides (bccpa, ). for workers in residential care, violence constituted % of all workplace injuries in the past five years (safecare bc, ). it is frontline care staff who provide intimate care, and in particular casual staff with less relational knowledge of residents, who are subject to resident aggression more than any other worker in long-term care. but even while companions provide intimate care, they face far less violence from their clients because they are able to provide slower, more attentive, one-on-one care. while workplace violence is commonplace, workers feel, relative to programs to enhance resident’s safety and prevent resident abuse, that the safety of workers is neglected by the health care system, and at mv, by management as well. as clara, a care worker at mv, puts it, “resident safety, yes; but worker safety, no….it has been a fight every day. we don’t ask for much. this is basic safety.” she sees this neglect enabled by the marginalized social positioning of the majority of frontline care workers: “we carry it on our shoulders. we are foreign people, we have no complaints, we are new to canada. we don’t mind to do the hard jobs, but we’re not taken care of.” workers point out while they now receive vch mandated workplace violence training, facilities are not equipped with additional staff and resources to prevent violence from occurring in the first place, or protect themselves when it does emerge. additionally, vch’s increasing educational and reporting requirements, which seek to mitigate and document workplace violence, place additional time demands on staff. workers providing care for an aggressive resident need enough staff to be able to work as a team, and ensure care is not rushed. given a lack of workplace protections, staff take situations into their own hands by being vigilant in the face of potential violence, and walking away from aggressive residents when it is safe to do so. during one dinner break, i ask a group of care staff whether or not incidents of violence are reported and addressed. they laugh and reply that if they reported it each time, they would have to fill out reports four inches thick each day. getting hit, slapped, grabbed, scratched, kicked, bit, or spat on are routine aspects of their work. as such, they do not report it unless it is a more serious incident. their responses highlight, given the demands of reporting and little extra time in a workday, how commonplace workplace violence is overwhelmingly brushed off, normalized, under-reported, and underestimated (foner, ). this is the case even though it has significant adverse impact on the psychological health and material safety of care workers. other prevalent health and safety concerns include repetitive musculoskeletal strains and injuries such as carpal tunnel syndrome, arthritis, and chronic back, neck, shoulder, and arm pain. this is the result of overwork and overexertion due to understaffing, and rushed and heavy workloads it is also the effect of care tasks that require lifting and bending, as well as pushing, pulling, and maneuvering heavy wheelchairs, bodies, and equipment. it is especially risky when understaffing means one worker completes tasks that require two or more staff for safety reasons. it weighs especially hard on an aging workforce that is already worn out from the work. stress, anxiety, exhaustion, and related illnesses are also common under challenging work conditions. while common throughout the long-term care sector, injuries and other adverse work-related health outcomes are heightened in contracted out work (zuberi, a, b; cohen & cohen, ). mv, a for-profit facility, stands out because it has a high number of workers with injuries, or chronic health ailments, and on workers’ compensation (wcb) or short and long-term disability benefits. many workers at mv explicitly point out the rising rates of injuries among themselves, and link this to the increasingly heavy workload. at gc, in contrast to mv, strong extended benefits go a long way to ease the impact of workload intensification and treat the stress and strain of overworked bodies. worksafebc data between and shows that b.c.’s care aides, more than any other occupational category, such as construction workers and police officers, are subject to more time-loss workplace injuries. the vast majority of claims were by women ( %), and in residential care ( %) (griffin, ). overall, care aides rate of injury is approximately four times the b.c. average. worksafebc claim costs in for the long-term care sector reached nearly $ million (bccpa, ). across the sector, workplace injury is implicated in rising costs associated with overtime hours, sick days, and short and long-term disability. unaddressed systemic violence also perpetuates recruitment and retention issues in the sector (bccpa, ). there are ramifying financial, corporeal, and psychological consequences for workers, including taking time off to recuperate (without entitlements to a full income); not being able to pursue full-time or overtime work, or work an additional job; and early retirement. a handful of workers face difficulties trying to prove chronic pain, stress-related, or mental health issues, which leave no visible sign on the body, in order to access wcb or disability entitlements. injuries and ailments also have long-term impacts and leave lasting traces. valeria, a care worker at mv, has had a bad back pain for many years. by the end of the workday her back agonizes, and nothing makes it better. she describes how this impacts her work and home life: “…sometimes when i work day shift i come home and i can't even make dinner. that's how bad it is.” sometimes she is in so much pain that “…by two hours working it's been enough, or by lunchtime, it's like 'oh i need to go home'”. many workers could not imagine how, under such challenging conditions, they would persist working until retirement age. there were a couple of staff who either left or were seriously contemplating leaving care work for another job that was easier on the body. yet some experienced obstacles due to their age, narrow skill set, and lack of experience outside of care work. retiring early is also contingent on pension entitlements and financial stability. retirement in a sector characterized by job insecurity is a major challenge because many workers work casual for many years, or end up losing their pensions if they are contracted out. workers at gc, compared to mv, have not been contracted out, and long-term workers have access to relatively good pensions. this is financial security for workers in residential care, however, is not common. many older workers at gc speak frequently and eagerly about retiring earlier than they anticipated because they do not know how much longer they can hold on doing this work. in contrast, workers at mv would like to retire early, but face financial barriers to do so. for gian, a support services worker, her aspirations to work one job into retirement were short-lived because of the severe bodily impacts of contracted out work, including her hands turning claw- like from overwork: “i thought i could work there until i retire, then after half a year i thought maybe ten years. my retirement is getting less and less.” she laughs, “i think at one and a half years, i say no more, i can't take it anymore!” apart from injuries and physical violence, verbal and emotional abuse are equally as common, and sexual harassment does happen (seeley, ). workers face racial slurs and discriminatory treatment from some residents. workers at mv describe how they are treated like “a dog” or “slave” by demanding residents and their families. in clara’s words “…they call you, ‘come to serve me.’ after that, you are a piece of nothing….they say go back to your country!” one lunch time at mv, the conversation of a group of care staff turns to the topic of sexual harassment in the workplace. they share anecdotes of bathing excited male residents, or having their breasts or buttocks grabbed by one of the notoriously lewd residents. one young worker had a resident call out that she had “nice boobies”, and that she should come by later and keep him company in bed. she was humiliated because he did this in a public area of the care home, and in front of his family, who just laughed about it. she felt even more frustrated when it was brushed off by management and left unaddressed because it was blamed on his dementia. although often invisible, difficult to measure, and typically not included as markers of occupational health and safety, mental and emotional stress, exhaustion, and unwellness are common for care workers (bccpa, ). “doing more with less”, or providing care in austere and intensified contexts, drains workers of their bodily, mental, and emotional energies and capacities. this is amplified through a lack of workplace support to effectively deal with these contexts. the demands and pressures of the work are inscribed on the worn out faces and bodies of frontline staff. sofia, an allied health worker at gc, describes how the mental and emotional demands of the job are, in part, a result of the change in resident population: …mentally there are days that after pm, i am done. i am exhausted. mentally, it's draining. part of it could be because of the workload. part of it, i believe, a bigger part i believe, is because of the population that we serve. the elderly that we serve in most of our facilities, due to their decline, cognitive decline, dementia and strokes and other things, they lose motivation and initiation skills. so many times, it's the recreation staff…who brings your energy, you're pulling everybody back. even if it's a small social, we are the ones creating the interactions. they don't anymore, they lose the initiative. so at the end of the day, some days, it's draining. nenita, a care worker at mv, sets up a real-life scenario of the myriad demands, including part-time work, heavy workloads, and family duties, that can lead to burnout: …you come from another facility, you work there for four hours with the demented people, and here you go, you're done at pm. you have a pm [shift] at another facility. you’re running, driving, dealing with the traffic. then you have four hours there too, and you have residents to get them up, to get them ready for supper, to clean them for bedtime. and here is your family calling you, ‘mom what's for dinner? mom, i'm sick.’ where were you there? they call that burnout. and, why this poor lady or care staff, why did you do that [work two jobs]? because, financial issues. do you know why? because she only has four hours at mv. she needed to find another four hours….because of the budgeting, two hours here, four hours here, these people, they are grabbing all the jobs, to support their family, right. and you come home, and your son or daughter, they're sleeping, and the next day here you go, you jump again to your job. but if you had . hours with the good benefits in this situation, living in vancouver, with the taxes, housing problem, you have to follow the standard of living, how could you survive? additionally, some workers feel they put the needs of the residents above their own, or have difficulty asserting workplace boundaries with residents. karen, a manager at mv, recounts her time on the frontline. because there are immense challenges to provide quality care and programming given systemic deficits, workers may feel committed to go above and beyond, exhausting themselves in the process. as karen relays: “you always want to be the best and give to the resident, but it's not possible”. this makes it hard, “especially when your new…and you're full of excitement and vim and vigor”. as a result, “there's a pretty high burnout rate”, which she herself experienced at least twice in her twenty-odd years in long-term care. there are particular psychological and emotional health impacts associated with the heightened demands of working in a special care unit (scu). scu workers speak about their limited life span in the scu, and the likelihood of facing burnout if they remain there too long. maryam who worked in gc’s scu for many years, talks about the emotional labour involved. she describes being contained in a locked unit with the same residents with very high needs day- in and day-out. she was eventually taken off the unit and placed somewhere else because she was emotionally overwhelmed and “used to cry all the time”. at mv, casual staff will rarely take an on-call shift in the scu because the work is so challenging. balbir, a scu veteran, reveals this is “because they easily get burned out. because if they work there for just a week, you get burned out. and i can see their facial expression and attitude, they start being mean to the residents.” in contrast to sensationalized and decontextualized media accounts and public portrayals of elder abuse in care homes, it is rather exhaustion, overwork, and burnout that push workers to lose patience and sometimes take it out on the residents. resident deaths also lead to grief and stress for many workers, especially when long-term relationships are involved. working with residents who are ill, declining, and dying, and helping their families cope can create “compassion fatigue”. as valeria, a care worker at mv, tells it, …when you lose them, it's a very, very emotional time to heal from all that because, like i said, we are not only providing the care, we are also human beings that care a lot for them and it is hard to lose them too, right. many care staff develop close and meaningful relationships with the residents they know and care for. as may, a manager at gc, shares, “when they go, a piece of you goes with them too”. maryam articulates how the residents she cares for affect and change her: you start loving them – you're with them more than eight hours [a day]. they're part of our life now. that's what i was saying, i learned so much from my residents. i was kind of brought up here. i came from a different country, and i learned so much from them. you start loving them….they've already affected us inside. how about if someone is dying in your hand, and you have the dead person and you're going home? that person was there ten years with you, and you think you're not affected? you're affected. emotional management is crucial for workers who intimately encounter death. anaya, a care worker at gc, shares the necessity of developing a thicker skin, because when a resident passes away, “it used to really affect me. i look at things differently now through my experience, i’ve learned with age. i had a mentality shift. i don’t want to see them suffer. you get hardened.” for many workers, their work and the residents they care for are often on their mind outside of working hours. for vicky, an allied health worker at gc, i think as caregivers of any sort we think about our residents a lot, and when we're not working, thinking of ways we can help them, and brainstorming ways that their lives could be better, could have a better quality of life. bringing work home is also the result of workers’ embodying the stress, anxiety, and exhaustion of heavy workloads. tricia, a care worker at mv, has the “bad habit” of being unable to maintain boundaries between her work and home life. rather than being able to relax at the end of the workday, her work colonizes her mind, and she mentally prepares and plans for the next day at work. she is also worn out from a heavy workload and finds it difficult to find the time or energy to eat well, spend time with her family and partner, and maintain her religious practices. she ponders, “what will happen to me? i will get sick and then there will be nobody to do the work.” jenny, a support service worker at mv has a similar experience: i've had different people tell me…’leave it there where it belongs.’ because that place, it will eat you alive. it'll devour you. it's true, if you let it. it will take everything you have. you know, even though i keep telling myself, just leave it there, don't think about it. just don't bring it home with you. but i've still got this habit where i take it home with me. i'm dwelling on it… work intensification, which depletes workers of their mental, emotional, and bodily capacities and energies, has implications for how they engage with their families. this is especially the case for workers that juggle a myriad of work-related and domestic demands, and when they have young children or elder parents to care for. maryam articulates that “when we go home we don't want to talk to anybody, you know. because we get so much pressure from work and we're tired, and pain in the body, of course our family gets affected.” nenita, a care worker at mv, echoes that “you don't have time to [spend with] your family. your burned out. you are not in the mood to talk with feelings with your family.” workers are exhausted from work and have no energy to go out with their partners and families. valeria feels “it is only work, work, work. i cannot enjoy anything else, because it's my limitations not only financially but also physically.” when they get home, many workers need to turn off, tune out, rest up, and recharge from the workday before they can spend time with their family. when workers are tired and on edge, additional family demands may be met with impatience and frustration. . workers’ strategies of control and care to manage the contradictory demands of relational care work and restructured bare care settings, workers actively develop, enact, and negotiate everyday informal coping and resistance strategies. their strategies of care and control include shortcuts to manage heavy workloads, fostering worker cooperation and support, and moving beyond bare care by asserting expansive practices of care. to manage intensified workloads and tight timelines, workers are compelled to create shortcuts in the provision of care. this is the case even if the quality of care suffers in the end. because workers have only about ten minutes per resident during morning care routines to provide all the necessities, including toileting, grooming, and dressing, they are stretched and pressured to provide even bare and basic care. shortcuts allow the work to be done faster or more efficiently. they include rotating which residents’ care needs are prioritized that day, and leaving some care undone until later that day or the following day. they may speed through tasks such as washing bodies, combing hair, and brushing teeth (also see armstrong et al., ). many workers mentally prepare the next steps of the care routine, or for their next resident. staff may also alternate which residents get up or not in a day, or keep them for lengthy periods in tilt-back wheelchairs because of the time it takes to transfer them in and out. they corroborate this is happening in other facilities they work in as well. in the words of balbir, a care worker at mv: yeah, we have to do rush, rush, rush all the time. that's the problem. but rushing all the time that is where you get injured yourself or the resident. especially when you are using the lift. then ten, fifteen, to twenty minutes is not even enough to spend on one resident….[and] how many residents you get up? maybe a resident may stay in bed for a while because you cannot get them up because you don't have enough time. reliance on adult incontinence pads (diapers) has been widely criticized as an undignified tactic used in care facilities to deal with toileting needs amidst widespread understaffing. to further save costs, management may ration incontinence pads (armstrong, armstrong & daly, ). or, as one casual care worker at mv shares, to save time, staff in another facility she works in use wash cloths inside the incontinence pads to soak up urine. this makes it so staff do not have to go through the laborious process of changing the pad as often. joan, a disgruntled family member at mv, tells me care staff have put two incontinence briefs on her brother. this makes it quicker and easier for staff to clean him up if he soils himself. workers simply take the top one off, and do not need the two people that would be required to change the pad. yet, for her brother, this was uncomfortably bulky and impeded him from using the washroom. it also posed a safety hazard as he had trouble walking around. a two-person assist is the term for care practices which require two workers to complete them safely, such as when using a lift to hoist or transfer a resident with mobility issues. with understaffing, the practical policy of the two-person assist turns into an unrealistic practice. care workers at mv and gc typically opt to do a two-person assist alone because there are too few staff and they do not have the time it takes to wait for another worker to arrive. it also takes that worker away from completing their own tasks. another similar organizational procedure that care workers circumvent in their attempts to provide more care in less time, is the requirement to be present while dependent residents use the toilet. while residents take ten or fifteen minutes or more on the toilet, workers clearly will not get through their workload if they wait around. they would rather multitask while they wait, and check-in on the resident at intervals. as one worker shares, she jimmy-rigs linens together to keep resident safe and secure when she leaves to do other work. workers are ambivalent about resorting to these trade-offs, even though they use this time to manage their workloads and provide extra care under the current constraints. a major conflict for workers is that by undertaking these practices, they risk injury to themselves or the resident, and may not be covered by wcb due to negligence. these fraught strategies parallel lopez ( ) and foner’s ( ) findings that informal workplace rule-breaking is used to offset workload pressures and provide better care. workers cope with heavy workloads, quality care issues, resident violence, and emotionally laden contexts by “letting it go”. this is a skill many of them have honed over time. for maryam, when a resident gets upset or lashes out, “you learn to let it go. you can’t let it bother you, otherwise it will get to you.” “i let it go in order to do the work and be there for the person. i don’t hang onto it and let it affect my work.” ashley, a manager at gc, describes, the staff are so caring, they take it to heart. they just want the best for the resident. i told them, ‘it's okay, you do the best you can. your job is to keep them safe’….when i started this job, i worked hard to make sure everything is done right, and on time. you can get obsessive-compulsive about it. but if you do that you're going to get burned out. you’ve got to let it go. if you're dedicated, it can be hard on you to leave a job undone. but it’s the system they are working in, not the worker. positive relationships between workers buffer the adverse effects of restructured care settings, and workers make a conscious effort to foster cooperation, support, and sociality in the workplace. tricia, for instance, a care worker at mv, often spends her break time helping to offset other care workers’ heavy workloads by feeding residents at lunch and dinner. workers share a key reason they stay working in their job or at the facility long-term, even amidst degrading conditions, is because of friendly and supportive relations between staff. a handful of care staff mentioned taking a pay cut or travelling longer distances to remain at gc or mv for precisely these reasons. positive staff relations prevent staff turnover. this in turn, generates the long-term knowledge and skills necessary to make heavy workloads manageable and provide quality care. it also saves facilities on the costs of continually training and orientating new workers. in under-resourced and understaffed settings, teamwork, effective communication, trust, and long-term staff relationships are imperative to perform better care work. a support service worker at mv reveals, “you have to be very organized. i help other staff get their work done. if one is behind, everyone is behind. i help them get the job done on time. number one is about teamwork.” this is especially the case for casuals who have not yet acquired the experience, skills, and strategies needed to get a heavy workload done in short timeframes, or to provide care or diffuse difficult situations by attending to residents’ particular needs and preferences. when a new casual is on shift and unable to keep up with the heavy workload, long- term staff often help out with their tasks. they “won't make it” through the workload otherwise. many workers go so far as to say they truly love their jobs, the residents they care for, and staff they work with. some felt their workplace is like a second home and family. in both facilities, there are frequent displays of worker’s long-term connection and appreciation for one another. birthday parties, baby showers, potlucks, and dance parties were held at and outside of work. at mv, althea recounts that one unanticipated outcome of contracting out was that workers’ relationships were solidified as they bonded over hardships: it had a big effect on people at the time. it's a really [big] crisis….it was very stressful, but we talk with each other all the time, what are we going to do. it's a big cut for our wages, but then again, we made it. that's how we really built the relationships between staff because of what we went through. similarly, another care worker at mv claims that amidst much worker discontent with the management and union, “a lot of people you talk to would say if it wasn't for the other people i was working with, i wouldn't work here anymore”. strong staff relationships and community building is key for staff to collectively deal with workplace issues. in particular, workers at mv take turns cooking and bringing meals to share with each other on their breaks. they use break time to banter, raise workplace concerns, share support, and take the load off a heavy day of work. at mv, it is also workers who look out for one another given the lack of respect and regard they feel from the corporate head office and management. a low budget for staff appreciation events meant that workers had to pay $ a head to attend their own christmas party. this high cost posed a barrier for many of the lowest-paid staff to attend. to offset the cost of the ticket and to generate money for small gifts or prizes at the party, a group of care workers took it upon themselves to donate money and fundraise on their own time. workers also pool and distribute money to help sick or disabled co-workers when they need to take extra time off or obtain therapy, particularly when they are not covered by benefits. in underfunded care settings, and under impoverished practices of care, workers face immense challenges to treat residents as human beings, and be treated as human themselves. workers and residents are not simply labouring or warehoused biological bodies devoid of full humanity. they have relational, emotional, and social needs and desires, which they express through strategies that aim to rework and re-humanize the practices of care. these strategies entail “going slow” to counter rushed care, expanding practices to meet residents’ holistic needs, and reasserting relational care by “going the extra mile”. in contrast to, or to make up for shortcuts in care, some workers make the conscious decision to “go slow” (see also foner, , , ). marilou, a care worker at mv, describes how during evening shift, she takes her time to provide good care, and makes sure not to rush her residents. while other workers finish their main tasks around : pm, she often works until pm, completing any morning care tasks left undone. “going slow” ensures that residents’ dignity is upheld, and also gives residents the extra attention needed to look and feel well cared for. by “going slow”, she also reduces the risk of violence, injury, and strain on the job. this is especially important because as a casual worker she does not have access to benefits like short- term disability. but being able to deliver slow care under work overload hinges on workers’ skills and knowledge of residents’ needs, wants, and behaviours, which develop through long- term work experiences and care relationships. similar to “going slow”, a casual allied health worker at mv subverts impoverished targets that allocate ten minutes for one-on-one “social interventions” with residents by lengthening the time she spends with them. rather than strictly follow the activity schedule or focus on numbers of residents reached, she privileges quality over quantity interactions with residents, and is flexible with programming to better respond to their needs. this is evident when she takes intentional time out of her busy workload to be attentive to and calm a frustrated resident when no other care staff are around to intervene. she later reflects, “she needed time. i needed to take her into her room and talk with her. i needed to listen. i had to forget the schedule, that was secondary.” to counter the bare provision of care and reassert relational care, many care staff routinely “go above and beyond” the regimented scope of their tasks and role, and provide “little extras” for residents. this is particularly the case for residents without family and with little financial means. care workers find meaning in and express pride at being able to do good care work, including making residents look and feel good, by providing little extras. little extras include cutting, dying, and styling residents’ hair, or manicuring their nails. staff may come in early or on their days off to host special events that bring joy to residents. marisol, a care worker at mv, volunteered her time on a day off to help organize a karaoke event and bring in her karaoke machine. this was important to her because it meant a lot to one resident in particular, and to keep things lively for residents, you have to “go outside the box and break up the routine”. staff often bring in special items for residents, such as their favorite foods and treats. this may be cake for a residents’ birthday, or a plate of potluck food for a resident who misses home cooked meals. when residents need clothing and other goods, there are some workers who go out of their way to gather old clothing from deceased residents, donate their own items from home, or go shopping for residents on their own time. anaya, a care worker at gc, shares how staff take turns to check-in with residents and pick up what they need or want when they are next at the store. simran, who has worked at gc long-term, often volunteers her time to go clothes shopping for one resident she is particularly close to. she likes doing these things, in part, because she sympathizes with the resident, especially because he has no family. anaya echoes that many workers do this extra work to better residents’ lives, to help out, and because they best know the needs of their residents. while these forms of unpaid labour are routinely performed, anaya shares that workers do not want to be recognized or even remunerated for it, as “it's for the resident, not for us”. althea, a care worker at mv, puts herself in residents’ shoes and ruminates over the challenges of getting old and not having money or family to rely on to support oneself. one companion believes that the unpaid “extras” she provides for her clients will eventually be reciprocated: “sometimes it's not always about money….i believe in good karma, so when we get old somebody will take care of us too.” but workers’ talk of coming to the assistance of residents without either family or money reveals more subtle tones of compulsion. there are simply no other means or no one else to do the work. there are also few resources to support and compensate them to do this necessary work. in this regard, vicky, an allied health worker at gc, claims you have to be passionate about your work. people do not do this work for the money, she argued, but because they are caring. through this, they gain inherent rewards rather than remuneration for the unpaid labour and “little extras” they provide. yet management may implicitly appeal to or explicitly ask accommodating staff to undertake this extra work. while “going the extra mile” is crucial to ensure quality care, it is largely invisible, goes unacknowledged, or is taken for granted by managers, corporate head offices, and government funders. similar to vicky’s sentiment, in response to my question about what keeps workers motivated to do this challenging work, many of them expressed something about “loving the job”. they do not do this work for the money, they do it because they love the work, or their “heart is there”, otherwise “you won’t last”. for one support service worker, “the work is very hard, but if you love your job, it becomes okay, you can manage, you can do it. it is about your mentality.” for many workers, the residents are their “number one”, and they find the care, and interactions with them highly rewarding. some do the work because they want to help vulnerable people and make a difference in their lives. others care well to reflect how they treat their own family, or want to be treated when they get old. under myriad demands, loving the work helps restore workers’ energies and keep workers’ morale up. it also underwrites a deficit care system. . implications of rationalization for worker and resident wellbeing restructuring and rationalization processes are implemented with insufficient consideration of the lived impacts and embodied ramifications to both workers and residents. they are abstracted from the realities of care work on the ground. intensified workloads and regimented care tasks and schedules constrain workers’ ability to provide attentive, responsive, and holistic care. workers struggle to provide even basic physical care needs let alone the contingent, social, emotional, and relational aspects of care. for a rationalized labour process to be carried out, the care relationship becomes dictated by the time-clock (cohen, ; lanoix, ) and care workers’ and residents’ bodies and behaviours are rendered compliant and controllable. subjective holistic beings and unpredictable bodily rhythms must be transformed into predictable, divisible, and manageable objects to be worked on through standard, measurable, and discrete care tasks (twigg et al., ). in this context, residents lose their independence, choice, and dignity. normal human requirements and desires are deprioritized and residents are forced to deal with situations that would in other circumstances be intolerable. this includes being left on the toilet or in incontinence pads so that care workers can juggle other tasks. yet, care work is labour intensive and relatively inflexible to scheduling. in one regard, bodily functions cannot wait or be contained within efficient timeslots, and multiple bodies cannot be worked on at once. this highlights the need for a stable and relatively high ratio of care workers to residents. while this should place limits on cuts to staff levels and care hours (cohen, ; twigg et al., ), systemic deficits are supported and perpetuated by workers’ unpaid labour and additional care. overwhelmingly, the costs and consequences of restructuring are borne by and come at the expense of the largely gendered, racialized, immigrant care workforce. this has implications for the quality of life of workers as well as those they care for. frontline workers’ embodiment of restructuring processes is reflected in their experiences of overwork, violence, injury, chronic pain, stress, exhaustion, and burnout. these contexts seep beyond the porous “boundaries” of work to impact their own social reproduction and family relations. expanding on the mechanisms and outcomes of restructuring, this chapter sheds light on the ways in which a rationalized organization of care and intensified care labour process are premised on the dehumanization, exploitation, and expendability of particular bodies, and corporeal, mental, and emotional capacities and energies. yet it also contradictorily requires, cultivates, and draws on workers’ caring commitments and emotional labour to ensure quality care under deteriorating conditions. there are both gains and limitations associated with worker strategies to gain control and assert meaningful care. their strategies illuminate contradictory elements of resistance and self- exploitation, care and coercion, empowerment and compulsion (baines & broek, ). on one hand, in the context of bare care settings, workers’ strategies of expansive and relational care make immediate, tangible improvements to quality of work and care. they are able to make gains, however small and fraught, when systemic issues remain unaddressed or improvements are slow to materialize. on the other hand, they are unsustainable and uncertain. their strategies represent individualized forms of charity rather than broader advocacy or systems change. while their tactics help offset a deficit care system, it also contributes to its reproduction, and thus aligns with state, capital, and managerial interests. it is workers’ commitments to those they care for, and willingness to extend themselves, for instance, that act as a buffer against the negative impacts of restructuring. yet drawing on workers’ feelings and affects to secure commitment may be seen as a form of affective domination. there are also bodily, health, mental, emotional, and financial costs for those who overextend themselves to fill the gaps in care (baines, ). routinized unpaid overtime and going above and beyond, for instance, clearly comes at the expense of workers stretched thin or drained from a myriad of demands at work. given taxing work conditions, some workers are politicized about and delimit the emotional labour and unpaid labour they provide. care workers often view themselves foremost as carers rather than workers. given the drastic change in residents’ care needs, for instance, some workers feel it is important to provide emotional and social support to residents, even if it is through unpaid labour. in this regard, strategies associated with emotional labour may draw on workers’ caring identities and derive meaning, satisfaction, and reward. it also enables a sense of effectiveness and integrity in the work (baines, a; ). workers’ caring commitment is often naturalized, by themselves, managers, and others, as a function of personality or gender, cultural, or national traits (adkins & lury, ). yet this effectively elides and entrenches gendered and racialized ideologies, divisions of labour, and relations of power that structure expectations over whose responsibility it is to fill the gaps in care (dyer, mcdowell & batnitzky, ; huang, yeoh & toyota, ). particular groups, such as women and migrant workers, are viewed as having an inherent, endless, and elastic ability to give or self-sacrifice under any condition (baines, ). yet this masks the constraining or conducive political economic forces, including labour markets and immigration regimes, that relegate and immobilize racialized immigrant women to the bottom tier of social reproduction work (dyer, mcdowell & batnitzky, ; pratt, ; strauss, ). unpaid care work may not only be bolstered through feelings of obligation but out of avoidance of management surveillance and discipline, and to secure their jobs (baines, ). caring commitment motivates, in part, not only entry into care work but also remaining in it under eroding conditions of work and wages (baines, ). for many workers, care work is not just work. it entails caring about vulnerable persons who they have connections with and attachments to. this means workers may rework rather than resist difficult work conditions. and they may face challenges bounding the unpaid work and emotional labour they perform if it will be detrimental to those they care for. as such, workers’ coping and resistance strategies tend to privilege caring for others or reasserting meaning into care practice even if it comes at their expense. this intentional trade-off is what donna baines ( ) calls compromise resistance. similarly, workers often drew on family ideals and tropes, where providing care for residents is akin to “taking care of a grandparent”, or “being part of a family”. this is especially the case when workers spend lots of time and build relationships with residents. it helps to foster workers’ patience, compassion, and sense of duty. it also entrenches heteronormative patriarchy and is premised on gender, race, and class inequities. workers also mobilize surrogate familial roles. when residents have no family, workers sometimes feel compelled to replace the work that their own daughters, mothers, sisters, and wives would otherwise do. for instance, during a memorial service at gc, a handful of deceased residents had few family and friends present. it was staff who worked closely with these residents that came up to the podium to speak heartwarming words of remembrance and share endearing anecdotes. this resonates with the work of lisa dodson and rebekah zincavage ( ), and tsung-yi michelle huang and chi-she li ( ), where family ideologies and metaphors are drawn on by care workers to bring meaning and value to their role, or to alleviate the hardships and demands of their work. yet they point out this may also be exploited by employers, in the service of state and capital, to bolster good care in deficit contexts. dodson and zincavage ( ) also found that the family trope is unevenly deployed, for instance, in management’s neglect of workers needs for a family- supporting wage, or bereavement support in the face of resident deaths. workers reveal how long-term, positive workplace and care relationships are vital to quality work and care. yet this is typically undermined by the degradation and contracting out of care work, which is correlated with high rates of worker turnover and the discontinuity of care (zuberi, b). so why is it that, at both gc and mv, many workers remain working long-term under such challenging conditions? they put up with poor work conditions, in part, because they truly care about and even love their work, their co-workers, and the residents they care for. this is also bolstered by strong and supportive relationships workers draw on in both facilities to manage workplace constraints and concerns. yet this signifies, again, that the burden falls to workers to manage eroded care work. and without broader forms of support and systemic improvements, their efforts will be fraught and unsustainable, and relationships of care lost. chapter : institutional strategies to manage a restructured care sector to better understand the mechanisms and outcomes of restructuring in particular care facilities, in this chapter, i look at the institutional strategies deployed to manage sectoral austerity and operational deficits, or take advantage of restructured policy and regulatory environments conducive to profit-making. relatedly, i attend to their impacts on the material conditions of work and care. throughout this chapter i ask: what are the common or unique ways in which restructuring touches down in particular care facility sites? what are the strategies used to buffer or facilitate restructuring processes? how is this mediated by distinct logics and place-based dynamics in a for-profit versus non-profit facility? which groups are tasked to manage, subsidize, and support constrained and under-resourced care settings? what are the impacts and implications for different groups involved in care? how are relationships and commitments, affect and emotion, difference and devaluation enrolled in and affected by such strategies? . case study : mountain view long-term care facilities are grossly underfunded, yet the imperative in private, for-profit facilities is profit maximization. considering these two seemingly contradictory and incompatible forces, how is mountain view (mv) able to be profitable? while strategies of profit-making in for-profit facilities include using care facilities as financial assets, conversion to private pay models, and cost-cutting, the focus of this chapter is on the latter. this chapter investigates a variety of tactics, largely dictated by a corporate head office and rolled out by facility management, that manage restrictive budgets and capitalize on amenable policy and regulatory environments. this includes contracting out support services and frontline care; cutting labour costs by reducing staffing levels, hours, and wages, and intensifying workloads; skimping on staff education and facility maintenance budgets; financial manipulation and keeping a close eye on accounting and auditing; and, lastly, meeting workplace concerns through practices of denial and deception. these strategies that exploit restructured care settings come at the expense of workers, with adverse implications for quality of work and care. . . contracting out and contract flipping in the last twenty-odd years, mv has been sold four times. the last sale happened about a year ago. in its current form, its ownership is separate from its facility operations, and these are undertaken by different companies. these companies are both financial firms with large stakes in the real estate market. in order to manage the contradictory mix of facility underfunding and profit-making imperatives, labour costs, which comprise the greatest cost in long-term care, are the main target of cost-cutting. contracting out is a key strategy employed by facilities to cut costs. reflecting the trend in long-term care, contracting out has been pursued in mv as well as the chain’s other facilities. subsequent to mv’s first sale to a larger for-profit business nearly twenty years ago, frontline care and support staff were contracted out. employment relations were first moved out-of-house to external subcontractor companies (the support services and care departments were contracted out to different subcontractors). they were then brought back “in- house” under a subsidiary company spawned out of, but legally separate from, the corporate owner, to pursue further costs savings. complex contracted out arrangements and corporate structures mean that money can more easily be funneled into difficult to track channels, profits skimmed from care provision, and risks and responsibilities averted. subsidiary companies also enable their parent company to pursue additional profits by “captur[ing] a full range of long-term care business to reduce market competition and improve corporate stability” (harrington et al., , ). although contracting out has adverse implications for work and service provision, workers were given no input into or warning of decisions to contract out. when workers received termination notices, they had the “choice” between looking for a new job in a sector undergoing extensive contracting out, or keeping their job, albeit with drastically reduced wages and benefits. althea, a long-term care worker at mv, paints a bleak picture of workplace tension and management deception and coercion surrounding the initial context of contracting out. before being contracted out, workers at mv were unionized by the hospital employees’ union (heu), a union with widespread membership in b.c.’s health and social care sector, and a typically positive reputation amongst workers. in the mid- s, because of internal conflict over workers’ satisfaction with the level of union representation and support, in combination with pressure from the management that if staff did not decertify, their work was at risk of being contracted out, staff decided to decertify from heu. workers were convinced that this move, which aligned with management’s interests, would protect their jobs and given them more leverage to make workplace gains. staff were stunned when, following decertification, management took measures to first cut back workers’ wages, and then contract out the work anyways. post-contracting out, workers initially were not unionized. it was when they were brought back “in-house” under the subsidiary company of the larger corporation that they were told they could unionize under a weaker corporate-sponsored union or remain non-unionized. while being unionized has advantages over not being unionized, workers point out the union was not chosen by them but rather “brought in by the bosses”. because of this, workers were and are distrustful of and disappointed by the union, which they feel is absent, unsupportive, and privileges managements interests. a lack of union support and threats of further contracting out have dampen workers’ ability to voice concerns, address injustices, and make gains in the workplace. adding insult to injury, when the b.c. supreme court ordered a $ million settlement in for compensation and re-training for unionized health care workers contracted out as a result of bill , workers at mv were further disadvantaged as the decertification excluded them from accessing it (heu, ). contracting out highlights contradictory logics and complicated outcomes. from the perspective of management, the practice of rehiring laid off workers treats them as expendable at the same time as it recognizes that long-term relations and experience are vital to the work. for workers, they were aware that contracting out leads to poorer work conditions, wages, and benefits, yet the majority were resigned to reapply to remain in their position because finding a better job was uncertain and risky in a sector characterized by rampant contracting out. in the words of one worker: “many places only hire [at] $ an hour. we would rather keep what we got.” even if they found a job for $ an hour, it likely would be casual. a new job means starting again from zero, with no seniority. in a workforce composed of primarily older immigrant women, many were aware of the labour market constraints on their mobility and opportunities, and decided to stay at mv. althea sums up workers’ constrained choice to stay: i guess at the time everybody just want[s] to survive, have something to live on day by day...because we need the money, we know it's less money, but where are we going to go? who’s going to hire us right away? steady income and access to benefits trumped concerns over reductions in pay. this was a priority for the majority of workers who financially provided for a family in canada and sometimes abroad, and “have mortgages, credit cards to pay off, car payments, university payments for our children”. many workers were worried over leaving positive worker relations behind and the challenges of integrating into a new workplace and work team. for fernando, a key reason he remained in support services at mv was because “the workers in the facility are like a second family”. working at mv long-term, nenita similarly feels that “this is my family for how many years?...you again don't want to build another family from another job”. those that did leave mv in larger numbers were workers close to retirement age, who would simply cut a loss and retire early, as well as support service workers because the drop to near minimum wage was not viable. fernando points out that when these support service workers left, the vast majority of new hires were recent filipino immigrants. . . cutting labour costs: eroding wages, benefits, and staffing levels because of contracting out, workers at mv are excluded from the heabc master agreement that negotiates collective agreements for over publicly-funded health care employers in b.c. this means that mv workers’ collective agreement is negotiated on an individual facility basis, weakening the union and workers’ ability to make substantial gains. consequently, there is a substantial gap in the wages and benefits of mv workers compared to workers under the master agreement. when care and support work was initially contracted out, wages were reduced by about one-quarter to one-third. care aide wages went from around $ an hour plus excellent benefits under the master agreement to a total of $ an hour including wages and benefits under their newly negotiated contract (approximately $ an hour in wages plus $ an hour in benefits). comparing the master agreement to their individual collective agreement, care aides’ wages are $ less an hour in the latter. when shift differentials, such as wage top-ups for working nights and weekends, are included, the wage drops by about $ an hour. similar wage losses occurred for all other worker categories. an allied health worker took a $ an hour pay cut to obtain full-time work at mv rather than remain casual in another facility. support service workers’ wages were rolled back to poverty-level rates, which in equal only a couple dollars more than the current hourly minimum wage. numerous workers, like jenny, express their chagrin at receiving “mere pennies” for an annual raise: and of course the management, well they think ten cents a year is sufficient enough! yeah, that’s what we were told one time. because one of the support staff asked the general manager when we just got a ten cent a year raise. he's like 'what are we supposed to do with ten cents a year?’ ‘well,’ she said, ‘that's quite sufficient.’ i thought, what! you can't even buy a postage stamp for that (laughs).that's coo-coo. i couldn't see them living on it. yeah, it's like hullo? what planet are, what century are they in? in the last round of bargaining, incensed workers highlight corporate’s petty tactics of drawing out negotiations, which led to several months where staff worked without wage increases. in an urban context of skyrocketing costs of living, workers’ wages have not caught up to what they were about years ago, before contracting out. valeria, a care worker, notes, “we still stay at the same salary, same benefits, everything still kept us the same as when we were privatized”. the combination of part-time hours and poor wages for support service workers means their paycheques are paltry. thirty hours of work equals around $ after tax and union dues for two weeks of living expenses. fernando matter-of-factly shares how as a result, his family had to sell their home and move in with their in-laws. he continues to struggle to support his family, and both he and his wife had to take on additional jobs. ray, a single support worker, too struggles paycheque to paycheque. he laments that workers “shouldn’t have to work two or three jobs to make ends meet. after i pay my rent and bills, what money is leftover for food for two weeks?” he finds it stressful that “the cost of living keeps going up. every time i’m in the supermarket, the price of something else has gone up.” he empathically reflects on the lives of his other co-workers, many who support a family, and run to and from another job before or after their shift at mv, caught in an endless cycle of trying to make gains while working bottom-end precarious jobs. in fact, working two or three jobs is standard for support workers and care aides at mv. fernando works every day of the week to make ends meet. he works as a cleaner early in the morning, then comes to mv for the afternoon shift, and spends his “days off” doing independent contract work. in between work, he spends much of his time on public transit commuting to and from his various workplaces in the vancouver area and home in a distant suburb. working one job until midnight, and starting another one early the next morning is exhausting, and it affects his work and home life. while a few other workers are interested in additional work or income, some face structural barriers because of their older age or limited education. other workers find they are too physically and mentally exhausted by the end of the day to be able to take on another job. for care staff, rotating schedules prevent them from obtaining a second steady job. and this has the effect of securing their time and energy as workers dedicated solely to mv. in addition to wages, what were once strong benefits were eroded. the contract negotiation led to original and new workers receiving drastically different benefits packages. the agreement was that original workers could keep their relatively good benefits package, while the benefits package for new workers was substantially reduced. in disregard of new workers’ current and future security and wellness, pension plans were eliminated, vacation time went from to days, and extended health, prescription drug, and dental benefits cover only - % of the cost (compared to - % for original workers). sick days for all care staff – critical in health care settings – were reduced from eighteen to five days a year, and, as a result, working while sick is commonplace. angel and nenita complain, “we have only five sick days a year and we work in health care, so we are prone to get sick all the time, and injured. so, it’s really hard. we have to work even when we are injured.” at the same time, they cannot afford to “even miss one day because then you will be short on rent”. this is echoed by camila, that “money is coming not too much, okay. it doesn't matter, i have a headache or whatever, i come. only if i'm really, really, very sick, i stay home….i'm coming because i need the money.” in a subsequent contract negotiation, workers gained short-term disability benefits, but because they cover only - % of their income, the benefits are not financially supportive enough for staff to rely on, without worry, in times of illness or injury. camila experienced precisely this when she used her disability benefits on two separate occasions for quite severe health issues. being on leave without adequate financial support caused her stress and aggravated her poor health. in the end, she came off disability leave early, before she was fully recovered, because the benefits were not enough to live off of. valeria relays a similar experience: well my problem was my back, my hip, and my knee because of too much walking, going up and down. my pain got really bad to a point i couldn't walk. i was off for a couple months, so i went on disability but unfortunately disability only pay like, uh, - weeks so i had to go back to work because they didn't pay me for even three months, which i wanted, i really needed it. so i needed to go back to work. that is, right now, it is a struggle for me because you know, i didn't really take care of my problem enough….it's hard to be off as much as you need, cause my bills were getting piled up….everything is just money coming out and it’s not even enough to pay bills. yeah. so, i came back to work but, yeah, it's a struggle….my back wasn't too bad but right now it's getting back to [where] i was before. the pain is more, and pain medication is not even helping . . workload intensification and unpaid overtime the work has been reorganized to lower costs and pursue profits. in addition to wage and benefit losses, staffing and hours were cut back, and workers face heavier workloads. care aides lost minutes of work each shift, and some full-time care, support, and clerical positions were cut back to part-time. this allowed management to accrue savings over time and through reduced benefit packages. because of cutbacks, during “non-peak” times of the day, such as : - : pm and after : pm, care staff are left alone or with more residents to tend to, posing a health and safety risk to both workers and residents. workers in all departments consistently talk about the intensification of work as hours and staffing are cut, and work tasks and responsibilities are added to remaining positions. part-time staff feel their workload is that of a full-time position, or one position is allocated the work of two or more positions. as valeria frustratingly claims, “this is their practice, and no one lasts – they go on sick leave”. in the case of the payroll clerk, when overwork and stress pushed her to take a leave of absence, corporate replaced her with someone without necessary training or knowledge but, workers suspected, at a lower pay scale. as a result, scheduling and payroll issues abound, including errors with pay, vacation, and benefits. frustrated staff, who often budget from paycheque to paycheque, spent their break time or stayed after work to sort out the mess. and the replacement often stayed late or came in on weekends to deal with work overload. similarly, positions on leave or vacation may not be filled. rather, other workers are stretched thin to cover these tasks in addition to their own. while their workload and responsibilities rise, their remuneration does not. when one frontline worker was asked to cover the work of her superior, who went on extended vacation, in addition to her own workload, her request for additional pay was denied by corporate. they used the rigidity of union collective agreements as a scapegoat to preclude paying a higher wage, even though these additional work responsibilities clearly breached the same bounds they were so vigilant to maintain. the incongruence of wages and work responsibilities is further enabled through the exploitation of workers’ enthusiasm and commitment to the work, or timidness to refuse or pushback. it is also justified by the notion that workers are gaining good experience, and that is reward enough. burdensome workloads mean that some tasks are left undone or corners are cut to get the work done in time. because there is no housekeeper to cover half of one floor until the afternoon, care staff on duty tend to spills and messes, and garbage, including soiled incontinence pads, piles up and poses an occupational health and safety concern for residents and staff. while management appeals to care staff to take on this extra work, there is no time for them to do it. cutbacks in the support service department further constrains care aides in helping to feed residents, as they now help the dietary staff serve food and drinks. in the evenings, at night, and on the weekends, the rn takes on a host of additional responsibilities. she is in charge not only of overseeing resident care on her floor, but managing care provision in the entire facility. she also monitors who comes in and out of the facility, directs incoming phone calls, deals with families as well as staffing issues such as sick calls or injuries, and manages emergency and maintenance issues that arise. because she “runs around” the facility dealing with so many, often unexpected, demands, her regular tasks rarely get done in time. workers consistently link facility renovations to workload intensification. when one floor was renovated to add ten new rooms, staffing levels did not increase. for six years, staff cared for instead of residents, violating vch’s staffing guidelines. one care worker shares her disappointment that vch allocates only an average of . minutes per resident for staff to complete each care task. this highly restrictive and impoverished calculation is generated through nurse assessments of residents’ care needs, which then determines the budget for care hours the facility receives from vch. she believes this low number is the result of nurses not having enough time and education to do accurate assessments and proper documentation. this is also compounded by an inadequate assessment system that does not account for many necessary aspects of care. while mv had one nurse dedicated to doing resident assessments, post- contracting out, the position was lost and the task was added to other nurses’ heavy workloads. to further ensure efficiency and extract value, strict plans and schedules must be adhered to. this places additional demands on facility management to document and assemble data, and audit in tandem with head office financial analysts, monthly financial, program, and staffing reports. tightly timed departmental tasks also require that managers closely surveil workers to ensure tasks are completed on time. ray, a harried support service worker, is often rushing around the facility trying to complete his tasks. he describes his work “like a mad house” with a “continuous” workload that “goes on forever”. he concludes the effect it has on him: let's just put it in a nutshell…a lot of times, i hate to tell you this, but i dread going to work. because it's so, because there is such a heavy workload…. it's not an enjoyable place to work and of course you've got a lot to do, and you've got to hurry, hurry, hurry…it just overwhelms me at times. of course i stay there, it's more or less economics right. i mean, where else am i going to get a job? similarly, the recreation department takes on a large number of programs given they only employ one activity aide and a recreation manager who divides her time between delivering frontline programs, resident assessment and documentation, and activity planning. karen, a manager, describes how the recreation department is desperately trying to obtain the budget for an additional part-time position because when their previous part-time person left, the remaining staff stepped in to continue to provide the same amount of programs presumably on a temporary basis. but because targets were met with less staff, and residents are not complaining, the pleas for additional funding for staffing are deprioritized: i've been told many times, that part of the problem is – and it's a good problem to have – that most people are happy here, the residents are satisfied, the family members aren't complaining, so why would they give us more money if everything's going on nicely? and we do an enormous amount of programs for how we’re [staffed]. so sadly, if i was doing a worse job with the department, then i would get them [more staff]. but i can't very well take those programs away. in contrast to the ideas and agenda of the corporate head office, the results of a recent resident and family satisfaction survey show low scores for recreation therapy. a subsequent action plan also identified a lack of staffing and resources as barriers to achieve better quality programs. without being afforded additional support, it is a wonder how goals for improvements, laid out in the action plan, will be made. what this implicitly signals is that corporate expects frontline staff to step up and fill the gap. yet the request for a part-time position is not frivolous. the current heavy workload expends workers’ capacities, sometimes draining them to the point that, for one casual activity aide, “by the end of the day i want to cry”. quality programs, she points out, require energy, effort, engagement, and time, but she often feels unable to provide this. when she is worn out, there are negative impacts on the residents, yet she continues to get no help or support with programming. in all departments, there are not enough hours to complete heavy workloads, and workers routinely provide unpaid overtime, working through breaks, coming in early, and staying late. while this is required to ensure basic care, it goes unacknowledged by management. it is unaddressed in staffing allocations and workers’ remuneration. working overtime is often the result of dealing with unpredictable bodily needs and the unanticipated time demands of falls, illnesses, and doctor calls. many staff work through their break in whole or part, because there are no other staff to relieve them of resident care. camila shares a typical scenario: like mariella, sometimes she wants to go to the bathroom, and you say ‘i have to go to eat mama, my break.’ and she is staring (giving puppy eyes) and she cries. so you have to! if you don’t put her on the toilet in the moment, you will have to do more work because she made a mess. camila and reyna speak about the disjuncture between management expectations, the nature of the work, and understaffing. while camila officially starts work at : am, she comes in at am in order to get her work done. even though she has been asking management for many years now that she get paid for this work, because it is necessary, they continue to pay her from : am. similarly, one support service worker officially starts at am, but comes in between - : am each day, without pay, so she can get through a heavy workload. as long as it keeps the pressure from management at bay, she does not mind doing this extra work. but for workers who are not able to come in early, they cannot finish their work on time and are worried that it makes them look like they are not pulling their weight. a frustrated worker exclaims that, “people want to quit. four people quit already! they are sick and tired.” the unsustainable workload has been an ongoing agenda item at the labour management meeting for a very long time. a couple of workers have also brought up the workload issue multiple times over the years with different managers, but nothing changes. one of them shares with me, as she takes her break while completing her work tasks, that even after this, “they knew the work is already too much but instead, when they changed around the positions, they added another task to mine!” while the issue remains unresolved, workers say it cannot wait: “our bodies are not that strong” and “we are getting older”. while management claims that staff are not supposed to provide unpaid overtime, reyna, a care worker, claims they are “deaf” to workers concerns and “they will just tell you, ‘you need to take your break’". but another worker laments, “we can’t because, if we take a break, the work won’t get done and it will be put onto the next shift”. she jests at management, “maybe we should let the laundry pile up? let’s let it pile up and see what it looks like!” then they have to do something about it. nenita questions the workers who continue to provide this unpaid overtime: “are you happy to do it?” “how about your back, how about your financial, is it okay? how about your family? you left them for four hours for free! it’s not right!” she relays, in an exasperated tone, non-reciprocal workplace practices of staff giving and management taking: the funny thing, i came one time at : am, and they deduct my [wages] ten minutes. it’s ridiculous. when i have a [resident] fall, and i have a doctor rounds, and the lpn doesn’t know what is going on on the floor, i stay….it’s : pm, i’m not saying i got ten minutes overtime to the rn or the manager. compared to gc, the management team at mv is about one-half the size, even though mv is one-quarter larger in terms of the number of residents. while management rolls out head office policy and procedure with seemingly little question or challenge, managers are also impacted by workload intensification. they are unceasingly busy, and “can never seem to get the work done”. an interview with donna, a manager, offered an interesting glimpse into the everyday chaos created as a result of cutbacks and work overload. as the receptionists’ hours were reduced from full-time to part-time, the management team takes over her roles in the afternoon. this includes assisting incoming and outgoing visitors and screening calls to the facility. during our interview, we were continually disrupted by the phone ringing and front door buzzing, as visitors and workmen came in and out of the facility and her office. donna became visibly annoyed and distracted, and her thoughts trailed off or were forgotten entirely. when i apologized for the bad timing, and asked if we should reschedule, she muttered under her breath, clearly agitated, “it’s always like this”. this was a vital turning point where i realized management are not only facilitators of corporate’s profit-seeking measures, but are also targets of it. . . cost-cutting measures: food, programs, education, and maintenance mealtimes are a highlight of many people's day, particularly for residents in long-term care. yet under imperatives of cost-cutting mealtimes are reduced to a rushed, medicalized, task- based activity (lowndes, armstrong & daly, ). at mv, resident complaints commonly revolve around unappetizing and poor quality food. a survey of the dining room after a meal illustrates widespread dissatisfaction: some plates will be barely touched and most are only half- eaten. one evening i sit with anna and don at their table, and a dietary worker serves them grim, plastic looking hamburgers and a tart filled with canned fruit. anna eats only half the hamburger and no coleslaw, stating “i’m not hungry, you don't do anything here.” she subsists off the deserts rather than the main meals. i turn to the table behind us and ask the men how their dinner was. robbie cracks a joke, “it’s better than nothing”. luigi tells me he does not mean to complain, but he is getting tired of the selection of chicken or fish, chicken or fish, in different iterations. the funny thing, he says, is the meat is indistinguishable – you often don’t know what you are eating. he believes the food is not fresh or healthy, and often foregoes the meal altogether. this dissatisfaction is the result of food budget cuts that saw previously scratch-made quality meals reduced to the purchasing of premade, mass-produced, frozen food. this move also saves on preparation time and labour costs. clara sums up the impact on the dietary workers: “all they got to do now is bake it, steam it, boil it.” yet poor quality food lacking in nutrients has adverse implications for residents’ quality of life and overall health and wellness. interestingly, while many residents have a hard time eating facility food, they greatly enjoy home cooked or restaurant food that their family members bring them. because there are limits to the reduction of frontline care work, life-enhancing activities and services are also the targets of cutbacks. recreation programs are executed low-budget, and supplies for activities are wanting. one activity aide, with the help of a recreation manager, is stretched thin to provide social, emotional, and physical programs and activities for over one hundred residents. as a result, there is a lack of capacity to engage resident’s diverse interests and abilities. activities are typically organized for limited spans of time on each floor to reduce the time it takes to get residents to and from activities, and to lessen the number of residents the activity aide tends to. under heu, mv had a physiotherapist, occupational therapist, and a social worker, who contributed to quality of life programs. but post-contracting out these positions and associated programs were cut back, and an exercise room was lost in the renovations. joan, a cynical family member, feels this is particularly hard on residents in the special care unit (scu). she calls these residents “the forgotten people” as they are rarely able to leave the unit and participate in larger facility life because “they can't spare the staff to take them up or downstairs. you won't believe the amount of times i've come up and he's [her brother] been sitting in his wheelchair staring at a blank wall, getting no stimulation.” there is also little budget for equipment upkeep and repair, and much of it is in poor condition. mattresses are old and worn, imprinted with the ghostly shape of bed-ridden bodies. mechanical lifts and wheelchairs are not maintained, and items like alarm guards and call bells do not function well or at all, with implications for staff and resident safety. while the facility does not want to pay the high price of a facility alarm system that would prevent residents with dementia from exiting the facility, there are not enough staff to adequately monitor wandering residents. when a resident escapes, clara, a care worker, feels that it is staff who get blamed. because the sole maintenance person is overworked, care staff feel compelled to fix plugged pipes and drains because “it's not fair to my resident that they cannot go to the toilet, because it's already been three days and it hasn't been fixed”. while programs and maintenance are cutback, costs are shifted to the resident and their family. the tendency in for-profit care facilities, as is the case at mv, is to charge residents higher and additional fees for items, such as recreation activities, equipment, cable tv, and private rooms, which are typically included in non-profit and public care homes. one incensed family member claims “they charge for everything in this care home, they charge for every breath”. she was billed hundreds of dollars more in fees per month compared to the non-profit facility her husband was previously at, even though both facilities are publicly subsidized. skimping on educational and professional development opportunities, too, saves the facility money, yet has implications for staff and resident relations and safety. adequate education is especially important when providing care for people with dementia. staff point out that dementia-related training, such the gentle persuasive approach, would be helpful for all staff to learn more effective ways to deal with challenging behaviours. this is because staff lacking education may deal with confused or agitated residents in inappropriate ways, which ends up making the situation worse. support staff are also routinely excluded from developing such important knowledge and skills, even though all departments work together in the provision of care. a licensing inspection last year found that many workers were not up to date on required education. to remedy this, the educational components were dumped on workers at once so they could catch up, disregarding the overwhelming workload increase. workers also express a need and desire for team-building workshops across departments “…so that staff can bond, staff can know each other…so it’s like we’re on one team”. angel points out the paradox that teamwork is integral to the organization’s mission, yet management claims there is no budget to foster this. this is even the case when managers “are always telling to the staff, that ‘oh, they don’t have enough skill.’ but if you put them into team building, they develop their own skills.” at the same time, staff recount the deteriorating quality of education they receive. education used to entail all staff and were often half or full-day sessions provided externally by vch. but because staff complained about not being paid to attend mandatory educational workshops that fell outside their work hours, management moved to a model of in-service education. now education is provided in brief - minute sessions or printed booklets with multiple choice tests, which staff are expected to do on their own time or at work. when education is done at work, management pulls two workers at a time from each floor to take the training and test, which leaves only one care aide and nurse to attend to almost residents, posing a safety issue for residents and workers. working through educational materials at work takes time away from care and poses distractions. as nenita relays, “call bell rings, someone is on the floor, someone made a mess, someone needs to do the toilet, and you can't do what you're doing – you're trying to understand what is the meaning of the education”. for mandatory education that is externally provided, management is highly selective about which staff can attend. because it is often only one or a couple staff that get to attend, they are tasked with supporting the entire facility and rest of the staff with the skills and knowledge to support contexts such as palliative and wound care. while facilities receive an annual education grant, staff point out it is not going to quality education, and wonder where the money goes instead. . . “it’s the budget” or practices of deception, disregard, and denial filing workers’ compensation board (wcb) claims, protecting workers from workplace violence, and following union rules when filling staff vacancies take a lot of time, which management does not have. because it is a time-consuming process, management used to circumvent the union seniority list when shifts needed to be filled by directly calling in hard- working staff who would likely oblige. yet dedicated advocate staff put a stop to this by calling management out on this practice. in a sector where casual work is prevalent and workers vie to build up their hours for seniority to apply for permanent positions, such practices are highly unfair and prevent some staff from accumulating much needed hours. workers also feel that management prioritizes the interests of families and complies with their demands, even when workers are not able to ensure them. in contrast, some family members feel unsupported by management, and excluded from their loved ones’ care. as joan angrily recounts, neither management nor staff communicated significant issues to her, including when her brother had a serious fall that went unreported. while joan felt kept in the dark, fraught relations between staff and management may have prevented workers from reporting out of fear of disciplinary action or losing their job. in another situation, poor support from management impedes workers from filing wcb injury claims, and it is advocate staff instead who come to the assistance of scared and injured staff. one advocate staff relays that workers with english as a second language are particularly uneasy about filling out the lengthy and complicated paperwork “because they don’t understand what’s on the paper”. when these workers try to get help from management their calls are ignored, and advocate staff lend a hand with the paperwork or offer advice on how to proceed. to prevent wcb claims in the first place, one manager threatened staff that if they get hurt, it is on them to complete the forms. in this adverse environment, workers sometimes forgo their claims “because they don’t want stress and no one is helping them”, or “it’s too much work”. while lowering the number of wcb claims frees up more time for management, and also lowers operators’ insurance rate fee (zuberi, a), a lack of support to access wcb is alarming because injured staff have few other means to access compensation. high rates of injury and violence are also prevalent concerns amongst workers, which goes unaddressed by management. clara, a care worker, shares that her main concern is that there are no protections offered to workers who face workplace violence. reports of violent incidents are made but there is no action taken from management. workers also feel unsupported to deal with bereavement resulting from the deaths of residents, which is especially difficult when they lose someone they are attached to, the death is unexpected, or multiple deaths occur in close succession. there is no counselling or support program to help workers cope with the grief and trauma of dealing with death. rather than meaningful address of systemic workplace concerns, staff are provided band-aid solutions, such as a session of laughter yoga or a ten- minute massage, to counteract overwork, stress, and grief. but workers joke that they do not have the energy to laugh, or that only a handful of staff got a massage because “if you are number , i'm sorry, no more budget”. workers frequently mention that their ongoing concerns related to understaffing and heavy workloads are met with management’s response that there is currently no budget. as such, no action is taken, and staff are told to wait for the next budget. exhausted and exasperated, valeria illuminates how staffs’ incapacity to provide adequate care goes unaddressed by management: “now there is more aggression, extended care, dementia, but no extra care staff even though it was promised.” “the company keeps saying it’s the budget, but it’s really their greed. they make money off of us – the workers and residents.” tricia also pinpoints the lack of resolve to the fact that corporate “has a heart for business” not the people that work or live there. all staff hear is that there is no budget, and the same issues persist. yet workers also highlight the arbitrariness of management inaction to deal with understaffing. they claim that additional staff were brought in during licensing and accreditation inspections to make workloads appear more manageable. workers are disenchanted. as valeria ruminates, “i regret staying here for so long. it depresses me.” it has been so many years, and nothing changes. balbir is similarly frustrated “…that management doesn’t help us, they need to support us”, and wonders “how come they don’t fight for it [more hours and staffing]? they’re the management. this is about improving the care of residents. we need to be supported so we can give proper care.” angel cynically jokes that at the labour management meetings “we just go for the donuts and cookies now, they don’t listen to us, nothing changes”. instead, management displaces blame and responsibility for budget deficits to government underfunding, “washing their hands clean” of profiteering practices that play a substantial role in budget allocations. rather than management using their position of influence to advocate to the corporate head office or health authority for additional funding, overburdened staff are called on to develop solutions without any change to the constraining conditions they labour under. donna, a manager, is aware that the “workload is always an issue” but appeals to staff to not be so “hard on themselves”, and “work smarter”. she concludes, “i don’t have all the answers and i go back to them and say i'm looking for solutions because i am really wanting them to take some ownership of this.” workers, like angel, challenge management claims and locate budget deficits in the profit-making activities of their multi-million-dollar corporate owner: “it’s not a vancouver coastal problem, who give us the budget. it’s the company that receives the money.” to that nenita replies, “i’m not blaming them, but please don’t be greedy. they should take their portion enough, but they should be giving it with the employees and the poor residents who need it…” staff are concerned that public funding is being funneled from care into complex corporate structures. this is a difficult claim to substantiate, but they do know that last year, vch gave the facility extra funding to increase their care aide hours and put a mandatory lpn position on the night shift. while mv increased their short-shift care aide positions by an extra hour, no lpn position was created. this was going on for three months before a licensing inspector found the facility to have no mandatory lpn on night shift. at the same time that mv was found out and forced to create the lpn position, the care aide hours were cut back. while care workers point out the coincidental timing, management claimed it was because there was no longer a budget for the care aide hours. but staff are not convinced that government funding dried up mid-fiscal year and point out that the extra care aide hours were maintained in other facilities. workers caution, “where does the money go?” they highlight that it is not simply how much funding the care facility receives, but where the funding goes that is important: to frontline care or profit. . case study : gracious care centre gracious care centre (gc) is a non-profit care facility that offers a striking contrast to mv. it extends conceptions and practices of care in ways that counter the economic rationalization of restructured publicly funded care provision, and dominant practices of contracting out and cost-cutting. to put expansive conceptions of care into practice on the frontline, management and staff at gc do a lot of extra work through fundraising, juggling funding and staffing allocations, taking on personal responsibility for cost-containment, and fostering caring commitments and communities. in contrast to mv, these strategies buffer restructured care settings, and are not meted out against workers, but rather are actively enrolled and enacted by them to fill the gaps in care. . . fundraising for quality of life programs, and juggling funding and staffing the management and board of directors at gc do a substantial amount of fundraising. they host fundraiser events, write grants, and solicit personal donations to support quality of life programming. this includes physiotherapy, music therapy and musical entertainment, bus trips, and a large and active recreation and spiritual care program, all of which are either underfunded or not funded at all by the health authority. necessary equipment, too, such as ceiling or standing lifts, shower chairs, and specialized mattresses, are also underfunded and obtained through fundraising. out of operation costs that total $ . million, gc is currently funded at %, up from a historical low of %. gc may get further caught in a budgetary bind and management sometimes “scrambl[es] to find money” because unexpected expenses arise, and the health authority does not fully cover maintenance, capital costs, or sick time and other replacement costs. even while deficits reach $ - , each year, gc is able to manage it because contracted facilities (like gc) work with a rolling budget, allowing deficits to be passed from one year to the next without ever really being resolved. as a result, gc is always playing “catch- up” with its finances, and every year the deficit must be offset through additional fundraising in order to prevent cuts to programs. contracted facilities, like gc, are subject to greater funding shortfalls than publicly operated facilities (kary, ). this is because the health authority expects non-profit societies to come to the table with costs, and to fundraise and mobilize volunteers. to fill the funding shortfall, and to ensure additional quality of life programs and activities, the board, management, and staff at gc have a goal to fundraise $ , a year. a couple of large fundraising events are undertaken each year including theatre nights and food fairs, raising tens of thousands of dollars. one manager is also tasked with writing multiple grants each year, and a large portion of fundraised money comes from a $ , community gaming grant. while they have luckily received it each year they applied for it, it is not guaranteed. while fundraising is typically the ambit of management, this year they hired their first consultant to advise them on legacy giving. susan, a manager, excitedly shares that the aim is to increase family, friends, and community members’ awareness that they “can leave us things in your will, and you can leave us [life] policies”, and “if you have stocks and shares and bonds…you can leave that to us”. there will be “lots of opportunity for people to donate to us. they just don't know that [yet]”. families are a significant source of donations, and some confided that they donated what they could – up to thousands of dollars each year – to contribute to quality of life programming and to offset their family members’ portion of underfunded recreation costs. the bus used for weekly outings was a donation from the family of a deceased resident worth $ , . gc’s family council also contributes immensely to fundraising by hosting events such as an annual holiday craft and bake sale, which doubles as a community event. the family council fundraised for palliative care carts stocked with goods and toiletries to support family members through their loved ones' palliative process. overall, fundraising contributes to an extensive array of activities which attend to residents’ differential spiritual, emotional, cognitive, physical, and musical capacities and needs. the management and board at gc are ethically committed to not contract out care or support work because of the adverse implications to work and care conditions, and workplace relationships, including “union issues up the yin-yang”, “staff squabbles”, and “inter- departmental conflicts”. instead, management fills funding shortfalls and departmental deficits by getting creative in how they allocate government funding, juggle staffing, and share tasks across departments. experience and knowledge of frontline health care work, and how different departments affect one another is crucial to determine better budget allocations. the recreation department is a case in point. while the health authority does fund recreation therapy hours, in a facility with less than residents, the funding is only enough to hire one activity aide for four days a week, which would equal a paltry daily average of fifteen minutes of recreation per resident. but gc recognizes the importance of a strong recreation department, and that it takes the pressure off overburdened care staff. as susan relays, to maintain recreation programs every day of the week, funding is shuffled around from other department budgets: i believe that if recreation is strong…they will meet a very large percentage of our residents’ needs. never mind the care. they will meet those needs, whether they’re psychological, emotional, whatever it might be. for me, having a firm and strong recreation team, and not just . full-time hours [one worker four days a week, as per vch funding models]. but having enough bodies, so we're covered seven days a week, and there's somebody in the building to do things with our residents, we can alleviate a lot of the boredom. and it is, it's the boredom, and the helplessness, and the loneliness that our residents actually feel. if we have somebody, like spiritual care staff…that can step in and fill that gap, because, at . hours of direct resident care [as per the vch funding model], our care aides and our nurses do not have the capability and time to do that….so that's why i put such a focus on recreation. i honestly believe that recreation and spiritual care should be incorporated into direct care, because what they do might not be clinical care, but it is still care. and that just drives me crazy that somehow the health authority – not so much the health authority – it's the ministry of health, doesn't seem to understand that concept….i find it ironic because you look at the mission, vision, and values statements and what does it say? holistic care! and i laugh because they don't really understand the true concept of what that means. in another case, to relieve the rush of morning care routines, labour hours were moved from the kitchen to care department, because they “can manage, but the care can't”. in doing so, they created an additional care position on the condition that this position help kitchen staff serve meals and clear the dishes at meal times. to alleviate heavy workloads and meet demands during peak times, tasks are not only formally reallocated but also informally shared by workers across different departments. during my first day at the facility, two managers proudly point out that the cook is in the dining room helping to serve lunch because they are short-staffed. he moves from table to table, serving food, and chatting with residents. workload demands also shift depending on residents’ changing needs and capacities. while care staff used to help recreation with their work by portering people up and down to activities, vicky relays how, given residents’ increasing care needs and care staffs’ exhaustion, recreation staff now help care staff by “serving tea and coffee, or helping them with feeding, just to give them a break”. countering the task-orientation of mealtimes, vicky enjoys doing the tea and coffee because she can make it “more light and make it feel like i'm a restaurant person, like a lady serving tea and coffee. make it a little more interactive and fun. less institutional.” recreation has also shifted the intent of some of their programs. small gatherings of residents during mealtime used to be for the social element, but now it is done to help out kitchen and care staff so they have less residents to serve and feed. . . taking on personal responsibility to manage funding shortfalls both staff and management routinely take on personal responsibility for managing budget deficits and containing costs, with the ultimate aim to smooth departmental operations and keep contracting out at bay. practices of personal responsibility include completing work tasks outside of work time, going above and beyond in their work, and self-surveilling work practices, such as being careful and conscientious about costs and waste. these practices are more steadfastly enrolled by workers who have experienced contracting out. a couple of times, especially when a large number of staff were on sick leave, i heard workers who have experienced contracting out voice concerns and caution staff about the budgetary consequences of over-taking sick time and overspending on overtime hours. this self-discipline generates immense savings for the facility at a cost to workers. susan responds to my curiosity about how the facility has been able to work around funding shortfalls and prevent contracting out by highlighting the productive, cost-saving nature of workers’ attentiveness and commitment: it's such a difficult thing to define in a way. but i think if you can instill in the staff pride of the work they do and the place they work in, it makes a big difference, because staff then go the extra mile, and staff will also take better care of things….also, i think that all of us are very conscious of the money that we spend. all of us. like may keeps our food cost at roughly $ per resident per day. $ . or whatever it might be….let me give you an example: so may won't buy everything from sysco, which is our supplier. on her way to work, may will stop at superstore and she will pick up say cucumbers, or lettuce, or whatever, because at sysco, if she sees the price and says ‘oh, i won't spend that,’ because you're going to charge me $ , i can buy that at superstore for $ . then i'll go to superstore and we'll buy them at superstore. all of us do those kind of things….all of us are really cautious and careful. may substantiates this: as long as “susan and i are here, i can guarantee you there's no contracting out”, because “i will not go over my cost, my food budget. i'm constantly looking at my food cost.” may is able to minimize food costs, while maintaining food quality, through meticulous attention to food cost and waste. while they are funded $ . , and the average funded food costs is $ . per resident per day in b.c. (osa, ), may keeps their costs down to around $ . . she does this by maintaining relationships with suppliers, acquiring free goods, assessing what residents like to eat, and getting creative with leftovers – turning “seafood newburg on friday night….[into] seafood chowder on saturday lunch”. having personal connections with suppliers means she is able to elicit donations of food stuffs – congee soup base, tins of cabbage rolls, or chicken pot pies – often in the sum of hundreds of dollars. she knows her suppliers well, and if she is short on product and low on money, she will call them up and request, “i can't afford it, can you send me a case over for sample?” the money she saves in food purchasing is reallocated to recreation. similarly, she often does not pay the list price for goods, but rather bargains for them. she exclaims, “ask susan, she hears me on the phone. it’s constant! i'm not paying $ something for that!” she does this work, because in the end, “it's for the residents”. susan relays how, in a highly insecure long-term care sector, management and staff work hard to adhere to tight budgets, and this is acknowledged by the management’s decision not to contract out the work: [support services] really go the extra mile to keep their costs really, really low. my attitude is, if i were to do that [contract out], i would be saying to them that what you've done in trying so hard to do, it's insignificant. i would never do that because they really work hard to keep our cost down. our food waste is between - %. if you consider that the health authority is %! the problem with them is they have got sodexo. all their food is by contracted out people. i don't know if you've been in the hospital, but…it's disgusting, disgusting!…their people don't eat the food because it looks so dreadful, so there’s so much waste. % is just beyond shameful. and we are sitting at - %....and part of that is, because between may, the staff, the dietitian, they stay on top of what's working well....so they're just trying to accommodate the residents likes, and dislikes, and needs. so it does, it makes a huge difference. and i think, for me, i have not yet seen the need to contract out….and obviously, contracted-out care aides, that would be the last thing i would do, because the care aides are the ones that have the closest relationship with the resident. and, no, i would not ever do that. not while i'm here. i will resign first. because of ubiquitous fundraising efforts, staff are very much aware of the issue of sectoral underfunding. this not only dampens complaints about workloads, but also prompts some staff to donate to the facility. may shares that staff may buy a ticket for a fundraiser event, or might give “$ there for the donation, but they don't want anybody to know”. she sees their generosity as something that is encouraged from “the top”, through an organizational culture that emphasizes going above and beyond. because management is like that, staff tend to follow suit. in order to minimize costs and subsidize programs, staff and managers routinely donate goods from home or “volunteer” their time to pick up necessary items for programs or residents. vicky, an allied health worker, for instance, bought some art and craft supplies when she was out shopping because they were running low and needed it for an activity. she positions this as “just part of the job”, but also acknowledges that taking time away from the residents and programming to do things like purchasing is frowned upon by management. . . fostering caring communities and commitments in my inquiries into what made gc a different facility from the rest, the most common response from staff and family members included something like “it comes from the top down”. i came to realize this signified that management models acts and behaviours of leadership, teamwork, respect, and care for all, which is instilled in the organizational culture and taken up by frontline staff. as one manager articulates, the frontline staff need to see “…us working together, they see us helping each other, being there for each other, stepping up to the plate when we have events, when we have functions, whatever”. the management is “not in our offices hiding away, we are a part of the process”. in effect, this “cascades down to our frontline staff”, because “they look at that and they say if they're doing that…then we can do that too”. staff and families view this positively. sofia, an allied health worker, speaks about the reciprocal sharing of work and helping out when needed: i have worked at two places, and i have seen big differences between one and the other. and i don't know exactly why. i think part of it has to do with the administration. the philosophy of the organization, the philosophy of administration, and how that gets implemented by the administration team….and eventually it trickles down. one of the big differences i have seen here is that departments work cooperatively….here, all the departments work together. and the dietitian staff, they come and say ‘can you help us set up for this?’ well, ‘yes of course.’ and they will help me when it's me by myself when my staff is sick, and i say ‘please can you help me bring residents because we have an entertainer.’ that doesn't happen everywhere, not even close. vicky, an allied health worker, “think[s] it's the top down approach and the bottom up approach with the camaraderie, with staff. so we have a strong community, and we're almost like family in a sense.” she has worked at gc for years and “…noticed that from the first day, and working other places, it's not the same”. it boils down to the fact that “people are just respected here”, management “make an effort to not be in their office, to be out interacting with the staff and residents”, and “everybody looks out for each other”. even “the families feel it. there's a lot of gratitude from families.” similar to vicky, other staff expand beyond the “top down” theme to express that good work cannot be performed without the will, dedication, support, and positive relations of staff themselves. one care worker shares how staff “talk and share what is going on and how we are feeling, and we learn from each other”. she points out that because gc has not pursued contracting out, which erodes wages and benefits, and most staff are long-term and in secure full-time positions rather than working in two or more casual or part-time jobs, they are committed and can give more to their work and the facility. to achieve cooperation and teamwork on the floor, management enact a flexible and “soft”, rather than “hard” organizational hierarchy. in this arrangement, management are refreshingly “hands-on”, departmental roles blend, and it is expected for staff to take on tasks where needed. in the context of increasing resident care needs without a relative increase in staffing, management lends a hand to assist care and kitchen staff by portering residents to the dining room, helping to serve and clear plates, or feeding residents to ensure heavy workloads and tight timelines are managed. leading by example is key because, as may reveals, “i don't want them to say, well, why are you asking me to do this when you don't even do it?” it is also expected, given the type of work, that staff display appropriate attention and care towards the residents. may is not afraid to tell her staff if you cannot do that for the resident, “i don't think you should be here…apply for housekeeping, hideaway, clean a room, you don't have to deal with the resident. but if you're not willing to have the patience with the resident, this is not your job.” similarly, one allied health worker describes how management creates the space and work culture for staff “to be joyful and respectful and supporting residents”. a high standard of care is the norm, and “it shows up when somebody isn't doing that, in a place like this”. indeed, the bounds of care extend beyond official and funded work roles and responsibilities. impelled by tenets of christian service to help the vulnerable in need, some management take on additional informal care and advocacy work. this includes providing hot lunches and transport, and attending doctors’ appointments with residents of their nearby independent seniors housing complex. another manager shares that she provides around five hours of unpaid overtime each week because her paid hours, which are fundraised for, are not enough to do what she feels is a good job. while this allows her to ensure quality interactions with residents and families, she also feels better about her work. susan describes how a high standard of care, integral to organizational culture, is ensured through management expectations, hiring and evaluation practices, and the traits of persons drawn to this type of work: i think, firstly, i do think people who are working in this industry are born, they're not made….generally people come into this work, they are generally caring people anyways. added to which…our whole philosophy is, i believe quite different, and when we interview – and that's from the management level all the way down to the maintenance person – it's made very clear to the people that we interview, that in our organization, two things: we believe…that this is the residents home, and we work in their homes. and there has to be that respect for the fact that there is their home….the second one, of course is, and it says so in all our job descriptions, in the end, it says ‘and other duties as assigned’. and we make very clear when we give the job description to the staff member, or the potential staff member, that that's exactly that it means. it means that you will do whatever is necessary to make the residents life a better life. and that means working with your colleagues, that means cleaning up if it needs to be done, that means the administrator pushing a wheelchair because it needs to be done. and it's made very clear right from the get-go – that is our expectation, and if you don't want to work as a team, which means we all carry each other's burdens, this is not the place for you. it's not. she adds that those who do not fit in either decide to leave on their own, or peer pressure pushes them in line. there is a focus on creating communities of care, and fostering the caring commitments and capacities of not only management and staff, but families, companions, volunteers, and others involved in care. this has the effect of relocating care from an individual and private to a collective practice. families and friends involved in the care of their loved one get to know and care about other residents too. gc fosters caring communities in a myriad of ways. they host events, such as special dinners, concerts, memorials, and afternoon teas, which bring a broader community into the facility. they have a variety of community connections including a large and dedicated board, an associated charitable group, and an extensive volunteer labour pool. they create a friendly, appreciative, and supportive space, which fosters others’ inclusion in facility life and care provision. in this environment, strong connections are forged, and it is quite common to see family and friends of deceased residents, or previous staff continue to drop by to visit, or help out around the facility. as may says, “they don't have to, but they all do”. tom, an allied health worker, feels “blessed to be part of such a loving and caring team”, which he dubs a “family” “because that word really describes the feeling i get when i am here”. the difference is “the staff don't only ‘care for’ the residents, they ‘care about’ them”. yet all the work that goes into maintaining an organizational culture of care is elided in the “natural” and “easy” way that staff go about their work. meilei, a family member, invokes this as a “spirit of care”, where staff view and provide resident care in expansive and holistic terms. they extend themselves for the residents. she reflects that even while staff face many work-related demands, they love their work, and make it look like “it's not extra work to do”, like “they have the secret ingredient”. and “even down to the maintenance guy, when residents ask him for things, he assists, he listens. there are no confines that ‘this is my role.’” this is unique: “visiting other places, you see that there's something extra here.” this “spirit of care” is what some managers and staff feel is the reason that some residents enter the facility with only months to live, but end up living many more years. the quality of care and relationships, and engaging environment provides meaning for residents, which they argue, improves their condition and extends their lives. management works in partnership with, supports, and encourages a strong and vibrant family council. at gc, the family council is a tight-knit group of committed family members and is a space to share information, concerns, and experiences related to institutional care. importantly, they provide mutual support and assistance for family members and friends coping with their loved one’s transition into care, and during difficult times of illness, death, and bereavement. for jeanne, a newer family council member, it is nice to know you are not alone when you are going through the hard and stressful transition period. now that her mother is settled into the facility, she reaches out to and supports new residents and family members. the family council creates a community of care that promotes high quality care for all the residents living at gc. meilei reflects on the family council’s connection and care for not just their loved one, but all residents in the facility, and particularly those whose family members are not active in their lives. she will “hug, kiss”, and chat with residents who “just need someone to understand them”. family council is there to “give a hand” and “take care of each other” beyond what staff are able to do given their heavy workloads. this was evident when iris, a long-term resident, was sick and bedridden, and a handful of family members brought her flowers and baked goodies to cheer her up. meilei feels that “the residents are a part of us, and we are a part of them”. when a resident passes away, “we are affected, even if we don’t know them that well”. these often- present family members also create a lively and fun atmosphere, as they gather at a communal table to feed their loved ones, banter and converse, and exchange support. in restructured care settings where staff are overworked, staff and family relationships tend to be strained or distant, and there is little support to include family members in care. in contrast, darlene, a family member, relays how her involvement is made a priority at gc, and her choices are respected: i feel like they know that we are important to lacey. and having us here is a good deal for their patient….we are part of it when we want to be, and they're so respectful when we are not. everything we do they are grateful for, and they never criticize us, which is pretty amazing. in a supportive and trustful environment where things are well taken care of, meilei describes how this invites families “to be more involved, to take part, to grow with it in the human sense. you're not worried, you see things and trust them.” even with family involvement, staff never lessen their attention to and care for residents. . . workplace support, appreciation, and advocacy gc’s organizational culture and management practices recognize the conditions of work and care are intimately tied, and are responsive to the rights and needs of all persons involved in care, particularly and distinctively frontline staff. this has the effect of cushioning the constraints and pressures of sectoral restructuring and fosters dedication, teamwork, and care in the workplace. management is knowledgeable of and involved in frontline work, which allows them to understand the demands of the job, be supportive and proactive in resolving issues when they arise, and actively strive to better work and care conditions. in susan’s position, “how can i sit here in my office and say to my staff this is what i expect of you, if i actually don't know the road that they're walking. but i do know, cause i'm there…” and “i'm talking to staff, talking to residents’ family members about things that are going on.” positive relationships and good communication between management and frontline staff are essential for quality care. otherwise, “the person who suffers at the end of the day is the resident and the family, and then staff, and then up the ladder”. care staff are the “eyes and ears” of care provision. they possess intimate, frontline knowledge of the residents they work with, their health and functional status, and changes to it. at gc, care staff are integral to informing care plans and decision-making, which is not common practice in most facilities (mcgregor et al., ). there are multiple arenas, including care conferences, interdepartmental meetings, open forums, and management open door policies where frontline workers voice workplace concerns and inform care provision. while workers are given autonomy in their work, they, in turn, are empowered in, and take ownership of their work, and trust is built between staff and management. also distinct, is that staff are provided support, through counselling sessions and prayer circles, to help them cope with hardships, such as death, that emerge in their work or home life. frontline staff are not only included in important forums, but their ideas are listened to and their concerns acted on. staff routinely suggest that this is what makes gc a different and good place to work. one care worker compares gc with two other facilities she casually works in. in the latter two, the management stays in their office, and she does not even know who they are. because of this, when an issue arises, she is not comfortable to go to them. at gc, in contrast, she feels free to go to management with an issue. she knows they will listen to her, that they are fair, and will not take sides. during an evening break, helen, a long-term care worker, beams at me as we discuss what makes gc different. she tells me that so many staff have stayed at gc long-term because it is so good, and even the casuals want more hours. while cutbacks and heavy workloads affect all facilities, the difference at gc is “…you can work easier, you come to work happier”. this is “because we have support from the management, they listen to our ideas, we talk to the management, so and so need to change, we need to do some adjustments, they will listen to us” and “try to figure out how to work on the problem”. another care worker compares her workload at gc to another non-profit facility she works at. she claims that even though she has more residents to care for at gc (nine versus six residents), she feels that the workload is less because of the support provided by management and co-workers. in her words, gc “is a nice place, environment is nice, staff is nice, management is nice - they are really good people. they listen to you; they care about you.” anaya describes how managers’ support, care, and appreciation for staff translates to recognition of their hard work and staff feeling less stressed on the job. this, in turn, allows them to provide better care. the management respects staff, residents, and family members equally, and draws a clear line on unacceptable treatment for all parties. susan relays, “i will not allow our residents, or families, to talk badly to our staff. i simply will not put up with it. and i'm very clear about that.” “i've told that to some family and some residents and they get the message quite quickly.” at the same time, if “the staff treats a family member badly, i'm right there, saying this is not on”. while work demands are high, when management listens to, supports, and responds to staffs’ concerns, staff, in turn, are committed to the facility, and are more willing to go above and beyond at work. while gc tends to take in more challenging residents, they simultaneously advocate for the staff and residents, and have declined residents that are not a good fit, or when staff are unable to meet their care needs. to determine this, management looks at staffs’ workload and ability to provide necessary care: “are our staff overworked, exhausted? can they manage another challenging resident?” given a mix of understaffing and changes to the incoming resident population, gc must sometimes limit access to care in order to ensure safe, quality care and work for current residents and staff. in particular, because care staff are at their maximum capacity to assist residents during mealtimes, gc now must decline entry to persons that need total assistance with feeding. special consideration may be given to families that are able to assist their loved one to eat. deficit care contexts constrain facilities’ capacity to meet high care needs. while the aim is safety for both staff and residents, this paradoxically privileges persons with lesser care needs and support to access care, and impedes access to persons with higher care needs and without support. in another instance, susan explains how she draws on relationships with health authority officials to advocate for additional staff and negotiate more funding: we look at the health authority and licensing as our partners in care. they're not the enemy. they're not our antagonist at all. they are partners in care. we should treat them with respect and consideration and courtesy. so you will very rarely see us having conflict with them. i sit on the leadership committee because of that, because i think we need to have our voices heard.…these are funders, these are the people that dictate what we can and can't do.…and that's why, like last year when i went and approached them. i said ‘you know guys, we really, really need more money. we need more funding. i need at least the equivalent of at least one full-time position in my evening staff.’ i did a total breakdown of the [staff] routine….and i literally did that – what did you do from : pm until you went home, minute-by-minute, hour-by-hour, including your breaks, etcetera. by the time you got to the end of doing that you want to put your head down on the desk and weep because you’ll be exhausted going home, and because it is exhausting reading it. and i did that based on the staff feedback on the routines….i have an aging workforce at an average age of in our facility right now. people are becoming older, becoming more prone to injury, more tired, and all the rest of it. i said, ‘look at our present population. so many years ago we had wheelchairs we now have or whatever it was at the time. with all that, we have only got ceiling lifts, but i have something people in wheelchairs.’ so here we are, look at that physical work involved….so i walk them through this entire thing and i said, ‘you know, i come to you and say i really need this money. this is not frivolous; this is not fluff money. i need this money to maintain my staffs’ health. to maintain my residents’ safety. please would you consider it?’ well, literally within not even two months, we got the funding for one full-time position. in order to make gains, they also make concessions with the health authority. for example, when they are able to do so, they may take in challenging residents that other facilities will not. in the words of susan, it is about “pushing back where we stand firm for certain things, but also being flexible with them too”. susan was also in the process of setting up a meeting with health authority officials to explain the immense difficulties they faced with a previous resident they were being pressured to take back in. susan shares that they do not want this resident back because she placed so many unfair demands on the care staff. there was one time when she rang her call bell seventy times in twelve hours, with the result of overwhelming, stressing, and tiring out the care staff. susan will not put the staff through that hardship again. she is determined that they will “absolutely not have her back here”, and half-seriously jokes that if she shows up at the door, they will lock her out. in a similar vein, management also lobbied the health authority and nurses’ union to increase lpns pay to “what their work is worth” “because they were so underpaid” for their scope of responsibilities. respect and advocacy for staffs’ needs, in turn, bolsters staffs’ workplace commitment, and managers are aware that “it's those things that count at the end of the day. and that's how you get loyalty.” this approach prevents a divisive “us and them” environment, dissipates potential conflict, and establishes positive management-labour relations. . downloading the care deficit to companions, volunteers, and family in both facilities, as is commonplace across the sector, the care deficit is downloaded to and filled by companions, volunteers, family members, and friends (armstrong & braedley, ). these groups provide not only much of the social and emotional care work, but increasing the physical care tasks too. companions are a common fixture in care facilities. they comprise a rising proportion of the long-term care workforce, even while there are few studies that focus on these workers (armstrong & braedley, ). companions are about equal in number at both gc and mv. even though they are privately paid by residents with financial means, and contracted as workers external to the facility, they perform vital, often extra care work alongside facility care staff (daly, armstrong & lowndes, ). private pay companion programs are even integrated in some facilities as a supplement to bare publicly funded care. while their work is crucial to resident care, most or all of the companions i got to know have neither stable hours of work, financial security, nor access to benefits and entitlements, including sick time and vacation. gc does set standards for companions, including the condition that they are personally insured under wcb. these companions are all filipina. most previously worked as live-in caregivers, and a couple had gone through health care assistant training. some initially worked through an agency, making near minimum wage. but after a couple years of employment and making connections in facilities and with families, most are now self-employed and gain clients through word-of-mouth. companions primarily provide one-on-one care, support, and companionship. lyn, a companion at gc, has time with her clients “…to talk to them, and yeah, hold hands and say, ‘oh yeah, how have you been doing?’” because, “of course, the care aides don't have much time….they have to work fast”. companions may take their clients out for walks, lunches, or to run errands. the emotional and social care they provide improves residents’ engagement and reduces loneliness and depression. this is how benilda, a companion at gc, describes of her work with thomas: he tells me he wants to go to bed. i tell him no, no, no, not now. let's go out! we do something, we went to the sunroom. we spend time. i ask him more questions….those kind of things makes him, i think...[feel] included, or more, his cognitive comes back too. i don't know exactly really, but at least he got some memory to share. cause again, care staff, they don't have time to ask those kind of questions….i wish the care staff would have more time to sit and listen to them, right. but that's not the reality, right….instead of getting depressed, you want to, you want them to be involved in some part of their life right, cause they can feel depressed because they don't have anybody to share that. companions’ work lightens the load of overburdened facility staff. they often do aspects of basic care that staff do not have time to do, such as providing more than one bath per week; immediately changing an incontinence pad when needed; cutting fingernails or shaving facial hair; or, taking the time required to encourage or assist a resident to finish their meal. they may do little extras for residents such as styling their hair nicely or manicuring their nails. in contrast to overworked facility care staff, companions are able to be attentive and responsive to the feelings, needs, and desires of their client, and offer them choice and flexibility: benilda [companion at gc]: i just do the sponge bath and things like that, if she doesn't feel like doing [a shower]. or, if you want to go out, it's a nice day today, we can go out. if she doesn't feel like it, we can just go sit there, and just have some fresh air. and if you feel like going for a walk later then we can go. or, if you want to go in, i give her some options about what you would like. companions, working in close proximity with their clients and other residents, act as an extra pair of eyes and hands to alert and help staff when a resident falls, is aggressive, or soils their incontinence pad. because staff are not always around and attentive, companions often monitor, redirect, or occupy wandering, confused, or lonely residents. as lyn describes, “when they're busy, and everybody's acting up”, staff are “always grateful” to have her help. being able to provide one-on-one care and interaction also helps to settle and engage residents. companions support residents to be involved in the activities and life of the care home. this is particularly the case for residents living in locked scus, where they are not able to participate in programs off their unit unless accompanied. even when companions are with a client, they often take time to chat with and help other residents. at mv, one resident, wei, will not eat without assistance. because it often takes so long for staff to get around to helping her, she sits there staring at her plate and her tablemate worries that she is not eating. wei does not have her own companion, but often the companion of another resident will help her once she finishes feeding her client. even though the facility rule is that they cannot help feed residents because it is a liability if the resident chokes, she risks feeding wei because “what can i do? she wouldn’t eat otherwise.” in another situation at mv, divina, a full-time companion to emma, creates fun and comfort for other residents on emma’s floor by chatting and joking around with them. when the music therapist plays each monday, she livens up the space by singing and dancing along. one afternoon, i drop by emma’s room to say hello and find emma tucked into bed and dozing as divina repositions emma’s roommate so that she lays more comfortably in bed. at the same time, they chat in cantonese, which divina picked up when she worked in hong kong as a caregiver. while much of the care that companions provide is invisible and unremunerated, it is vital to residents’ quality of life and crucial to support facility staff. volunteers are similarly an integral component of care. while volunteers have always been involved in care facility life, in the context of underfunding and cutbacks, programs such as spiritual care, recreation, and art and music therapy now increasingly rely on volunteers to replace previously paid workers and even whole departments. volunteers provide one-on-one social interaction, and their work frees up time for staff to attend to other needs and tasks. volunteers often comprise a large part of the workforce, save the facility a lot of money, and contribute immensely to residents’ quality of life. largely due to its religious affiliation, gc has an extensive base of over forty volunteers in recreation and spiritual care. these volunteers assist with activities such as bingo and bowling, bartend during pub time, and porter residents to and from morning liturgy. spiritual care also has five specially certified palliative care volunteers. many volunteers are highly dedicated and provide long-term service of ten or fifteen years or more. comparatively, mv has far fewer volunteers, even while there are a committed few that provide vital services such as mass, bible study, and pet therapy. the difference in volunteer numbers at mv compared to gc is likely due to a lack of management capacity to effectively engage volunteers. or, one candid family member thought it could stem from potential volunteers’ aversion to bolstering mv’s corporate profit through their free labour. family involvement is critical to the provision of care, and it is typically much appreciated and supported in facilities, unless it is an overly demanding or critical type. research has explored how even with a loved ones’ entry into residential care, high levels of care continue to be provided by families (keefe & fancey, ; lanoix, ). in both facilities, many residents have family and friends often visit, sometimes every day or multiple times a week. to some dedicated family members, staff jokingly ask them, “when are you getting on the payroll?” meilei, now retired, comes every day to gc to feed her mother ming yue. because ming yue’s disease is progressing, she is not able to swallow well and it takes a long time to feed her. meilei painstakingly cuts her food into tiny morsels and slowly spoons it, bit by bit, into ming yue’s mouth. it is a tedious process that takes negotiation, prompting, and the patience of a saint. unlike care staff, meilei is able to take the time needed to feed her mother well. she also takes a bit of the burden off care staff who have to feed multiple people in one sitting. involved family members create a sense of community, which is encouraged or thwarted by the spaces and broader relations in the care home. their visits bring cheer, comfort, and support not only to their loved one, but to other residents as well. at gc, the sister of one resident comes in once a week to gather a small group of chinese residents to play mahjong, a coveted activity given it is the only chinese-specific one in the care home. at mv, there are a handful of highly committed chinese families that rotate visitations in half or full-day shifts, so that their loved one is never alone and lonely. families not only provide in-person care, but many also purchase extra care-related services out of pocket to improve the quality of life for their loved one. rose’s husband privately pays for physiotherapy and massage services out of their dwindling savings. while this has done immense work to rehabilitate her post-stroke body, it is either not publicly funded, or only minimally so. in jacob’s case, his family cannot afford private physiotherapy so he relies on his wife to help him to and from the exercise room and onto the machines, as staff do not have time for this. since her mother’s transition to gc, jeanne comes every day to visit, even if the amount of time she spends there has decreased over time. she comes in the early evening to share dinner with her mother, delia, in the family kitchen. she feels it is best for delia to be away from the rush and hubbub of clanging dishes and loud voices in the main dining room, which she finds irritates and agitates her. having cared for delia at home for years, jeanne is the expert in delia’s health and care. she helps staff by monitoring delia’s illness, managing her medications, and communicating any changes in health status to staff. after dinner, jeanne sets out delia’s clothing for the following day. she started doing this after she found delia unacceptably wearing four shirts, two pairs of pants, and multiple socks. she also likes to dress delia up because she enjoys looking good. before she helps delia to bed at night, she takes her for an evening shower. to jeanne, one allocated bath per week is insufficient. and because delia always liked to have an evening shower, it has a settling effect on her. now that delia is at gc rather than being cared for at home / , jeanne feels her contribution to delia’s care is a win-win situation. staff get additional time with other residents as they have one less person to care for in the evenings, and jeanne gets mornings off and the evenings to spend time with her mother. while some family members are involved out of their own volition and enjoy being a part of the care and community, others are there out of necessity, a sense of responsibility, or guilt. at both facilities, there are a handful of family members consistently present during meals times to help with feeding. yet at mv there are more family, friends, and companions that help offset the workload of care staff, compared to gc where more nurses, allied health staff, and managers step in to do this work. previously mentioned, at gc, high needs residents may only be able access care if they have family to provide for their extra care needs. similarly, janet, a family member at mv, shares that her husband needs help to eat, but on the days she cannot make it into the facility, his food will sit there, getting cold, because the care staff do not have time to feed him right away. she also often has to step in to do her husband’s personal hygiene work as staff are rushed and do it haphazardly. joan similarly feels the need to come in almost every day to do simple things, like play music on the ipod or tv, so her brother can enjoy what he loves. while this contributes to his quality of life, staff do not have the time to do it. she feels he gets little stimulation in the facility, and that he is merely existing, and certainly not thriving. her eyes well up as she looks at me. conflicted, she asks “should i be doing more?” she pauses before she replies, a sad and bitter tone, “but, i don't want to do more. i just don't want him to be short-changed.” . implications of institutional strategies for work and care conditions in contrast to typical conceptions of neoliberalized restructuring as rigid and uniform, the case studies of gc and mv reveal that restructuring processes and outcomes are not only flexible and alterable, but are mediated by a constellation of strategies and contingent on the actors, motivations, and relationships involved. it is essential to account for the organizational culture and context in which care is organized and delivered (foner, ; james, ). undoubtedly, very different levels of care and quality of work, as well as distinct forms of privatization, emerge from the same public funding models and restructured residential care system. at mv, this includes more explicit and severe forms of privatization that are meted out against workers at their expense. and at gc this includes individualized forms of privatization that are often actively enrolled and enacted by workers to fill the gaps in care. while unpaid labour is routinized and institutionalized into the organization of care in both facilities there are different logics and mechanism at work. where unpaid overtime at mv more often ensures workers get through heavy workloads, at gc, it typically emerges as a function of organizational culture, and management and staff practices of going above and beyond to ensure quality care. in the case of mv, the drive for profit-making skims and squeezes profit out of a meager set up. the adverse impacts of strategies of contracting out and cost-cutting, which manage and exploit restructured care settings, are borne by frontline workers, as well as residents and their family members, with major implications for quality of work and care. it is clear that whatever is gained in terms of short-term savings does not outweigh the damage done to staff morale and care relationships, and intensified labour-management conflict. overwhelmingly, cuts to staffing levels and wage end up in overwork, unpaid overtime, and discontentment amongst workers. this then translates into work-related stress, exhaustion, burnout, and injury, and erodes the quality of care provision. going beyond simplistic, dichotomous accounts of good or bad employers, it is crucial to note that much of workers’ work-related hardships stem from the additional pressures and lack of support from the corporate head office and facility management. workers, for instance, feel they are treated as expendable and exploitable and that their hard work and efforts go unappreciated. they also feel that directives from the corporate head office come from a distance. they are disembedded from facility realities, staff capacities, and the embodied impacts on the ground. in this regard, management and corporate emerge as an additional layer of oppression on top of the threats and degradation associated with cutbacks and contracting out. throughout the fieldwork, i was aware of poor relationships between workers and management, yet i was surprised at the extent to which it materialized when i analyzed the field notes and interview data. clearly, workers’ concerns need to be acknowledged and addressed, and the management can do far more to challenge or mitigate the demands of corporate head office, and advocate for the staff and residents. but it is also important to consider that the management, too, are in a difficult position. they are placed in the middle and subject to pressure from both the corporate head office and frontline staff. they are tasked with implementing practices and procedures that cut costs and ensure profits, and subsequently managing their consequences. crucially, care and support staff are the foundation and frontline of the long-term care system. when they are not supported or treated fairly, or their relational skills and knowledge disregarded, workplace operations falter and quality of care deteriorates, ironically undermining corporate profits. while management and corporate ignore deep-rooted issues and continue with business as usual, family and staff recognize that for a facility to run well, and to achieve high quality care, staff must be supported, workplace concerns addressed, and care relations based on cooperation rather than division and conflict. staff that are treated well, in turn, treat residents well. as one allied health worker notes, “if the staff is not supported…or felt appreciated, there is going to be a schism somewhere between doing your job at the basic, and going the extra mile”. this echoes nancy folbre and julie nelson’s ( ) insight that positive relationships, intrinsic rewards, and fair compensation, either consolatory or monetary, not only foster high quality care, but also achieve workplace productivities. as noted, these contexts are at play in gc far more than at mv. this also aligns with sharon bolton’s ( ) argument that the demands, forms, and outcomes of emotional labour are distinct under the imperatives of capitalist accumulation, even under the common context of restructuring. at gc, the emphasis on fundraising and voluntarism, practices of personal responsibility and charity, as well as going the extra mile constitute individualized forms of privatization that subsidize a deficit care system. these individualized forms of privatization are shaped by different logics, and have distinct processes and outcomes than forms of privatization that are premised on shifting public services to the private sector and under a for-profit model. while person-centred models of care can have the unintended effect of neglecting the needs of workers, gc works hard to respect and support the interests and concerns of all persons involved in care, particularly and distinctively for workers. while many of the strategies gc employs are promising, they are also complicated and fraught. there are both radical potentials as well as limits. while there is a genuine and expansive ethic and practice of care, many strategies oscillate between elements of choice and compulsion, empowerment and constraint. strategies that strengthen caring commitments and communities make significant, tangible improvements to quality of care and work, and foster social relations of reciprocity and collective care. on the one hand, management and workers may identify with a caring commitment, and feel good going the extra mile to ensure higher quality care. on the other hand, given under-resourced settings and heavy workloads, extending oneself to provide adequate care or juggling additional tasks, even to help a co-worker out, can also be construed as additional demands that frustrate, exhaust, and expend workers’ emotional, mental, and physical capacities. moreover, workplace practices and affects shape and reproduce particular worker identities in order to garner control, compliance, and care (acker, ; adkins & lury, ; ducey, ). organizational culture and management practices that foster caring commitments and going above and beyond to fill the gaps in care, even with good intentions, may take for granted, capitalize on, invoke, and bolster inequitable gendered, racialized, and classed power dynamics that underpin care workforces and care worker subjectivities. furthermore, bleak prospects in a restructured long-term care sector help position gc as a very good workplace. rampant contracting out and widespread insecurity act as omnipresent threats that hamper complaints, discipline workers, and foster practices of self-surveillance and going above and beyond. ultimately, such practices enable the facility to remain viable without cost-cutting and contracting out, and staff remain working in relatively secure conditions. compared to mv, workers’ exhaustion and frustration does not stem from management and corporate but rather from systemic developments in long-term care, largely an increasingly challenging resident demographic combined with understaffing and under-resourcing. the glaring difference between management in both facilities, is that at gc they make the time and have the commitment to support, assist, and advocate for workers. far more than i anticipated, positive workplace relations, an active and proactive management, and a well-integrated community of care emerged as crucial defenses to adverse restructuring processes and ensure higher quality care. yet the future is uncertain. reliance on fundraising endeavours as standard operating procedure, and individualized efforts to step up and subsidize deficit care settings are fragmented, insecure, and unsustainable strategies. there is no guarantee to the continuity of either in the wake of personnel, organizational, or political economic changes. in one case at gc, when a donor failed to provide the funds for the music therapy program, which they donated to annually over the last decade, management and staff were left scrambling to find money, and spent time they did not have pursuing additional fundraising. in another case, the current management and board are committed to not contract out the work, but once they retire or leave it is up to new management and staff to make bare bones budgets work or face the threat of contracting out. as one candid support worker asks may, “‘this is my thirteenth care home [i worked in], i have been privatized everyone. are we going to privatize if you're not here to control the budget?’” and may replies, “i can't guarantee that. i can only guarantee you that i can do what i can while i'm here with susan.” lastly, while the labour of companions, volunteers, and family members is vital to the provision of care, their involvement is uneven and uncertain even as it is heavily relied on. for instance, not all residents, particularly women and the most elderly and vulnerable, have the financial means to hire a private companion. not all facilities are capacitated to engage and coordinate volunteers, and not all family members have the time or will to provide extra care. while the presence of family and friends contribute greatly to facility life, the vast majority of those regularly involved were, not shockingly, older women, many of whom are retired and without children to care for. their disproportionate involvement reflects and reinscribes a patriarchal division of labour that relegates women as providers of care, comfort, and companionship. and their ability to “freely” provide this care is typically through their release from the capitalist realm of production. there are also a myriad of financial, emotional, and corporeal stresses and strains involved in individualized efforts of family and friends to fill gaps in care, particularly when there are few resources and supports available. for women who are employed or caring for a household or dependents, a double or triple duty of work and care emerges when responsibility for long-term care is shifted back to the familial sphere. as these women tend to be older they, too, may have their own health issues, or tend to another family members’ health issues. such contexts pose obstacles to be involved in care on one’s own terms, and raise equity issues when involvement emerges through constraint or coercion. forms and costs of care provision that once were or should be integral to publicly funded long-term care are increasingly displaced to and provided by not only families, but also precariously situated volunteers and companions, again raising equity issues (daly, armstrong & lowndes, ). overwhelming, the myriad of strategies employed in facilities and across the sector support and subsidize a deficit system, fill the gaps in care, and keep facilities afloat. while such strategies are crucial for working in and reworking restructured care settings, they give the false impression that things are running smoothly. more importantly, they may mask and fail to challenge the structural forces that underpin deficits, and thus depoliticize and diffuse pressure for much needed systemic transformation (baines, ). chapter : uncertain futures, different futures i have outlined how the state has devolved responsibility for care, and encouraged for- profit privatization and financialization at a cost and risk to workers, residents, and taxpayers (chapter one). i then evaluated restructuring from the perspective of care work reorganization, labour process change, occupational health and safety, and workers’ strategies of care and control (chapter two). in chapter three, i explore the differential ways restructuring touches down and is managed in a for-profit and non-profit facility. i look at the myriad of actors, motivations, and relations involved, and the material impacts on work and care. what these chapters overwhelmingly reveal is that work terms and conditions have been greatly eroded over at least the last fifteen years so as to impair the ability of care workers to provide safe, responsive, and quality care. workers narratives recount that work in the long-term care sector has shifted from being decently-paid and secure to poorly-paid and highly insecure. experiencing the frontline effects, workers are disenchanted by, as well as passionately opposed to, government neglect over care provision. they feel the government “only cares about money”, or “the bottom line”, and that the hard work and relationships involved in care are neither recognized nor supported. they have moral concerns that good care cannot emerge from a for profit model, and believe that profit maximization has a dehumanizing effect. they note that it capitalizes on vulnerable peoples’ care needs and labour market inequities. as valeria sees it, “government allow[s] business companies to get rich and richer and we are getting poorer and poorer”. workers who have experienced contracting out are highly politicized and know the oppressive forces that shape their work. although bill and were enacted over fifteen years ago, they remain alive in peoples’ memory and embodied experience. workers locate blame squarely on the liberal government for “destroying” health and social care work. an environment of widespread degradation and insecurity creates a sense of hopelessness and cynicism. there is a lot of fear and uncertainty about what the future holds. even workers at gc are worried over what will happen to their jobs when the management and board members change. but fear is particularly rife at mv because of a recent ownership change and the fact that workers’ collective agreement expires soon. in the face of continual loss, they wait “in limbo” for the decisions of the corporate head office, and “go day by day”. yet because the sector is characterized by extensive contracting out, workers feel that they cannot change jobs to better their position. moreover, a relatively good benefits package compels original staff at mv, in contrast to new staff, to remain in their jobs amidst deteriorating conditions. long-term care policy decisions, and the organization of care, are disembedded and disembodied from everyday realities of life and work in facilities. there is widespread sentiment among workers and some management that inadequate or harmful policies, which affect their work and care, are made by people who have no experience or involvement in long-term care. they feel that policy makers should consult with frontline workers, step into their job for a day, or visit facilities to witness the day-to-day operations and work conditions. there is a contradiction between restructuring and rationalization processes and the requirements of good work and care. as noted, the current organization of care does not account for the contingent, relational, social, and emotional nature of care. a key issue for workers is that inadequate staff levels and heavy workloads leave them no time for basic and safe care, let alone attentive and holistic care (armstrong et al., ). care practices, which entail trust, intimacy, and responsiveness are incompatible with market-oriented imperatives of efficiency, cost reduction, and profit maximization (rämö & skålén, ). care work cannot be subsumed to economic rationalization without severely compromising its quality, and leading to insecure, exploitative, and dehumanizing conditions of work and life (cohen, ). overwhelmingly, state and capital’s neglect of the basic requirements for quality care work results in care deficits that are borne by caregivers at the frontlines. at the same time that care workers face constraints and hardship in restructured care work, they are not totally subordinated to and undermined by them. care workers instead find innovative ways to reassert relational and meaningful care, just as they find strategies to protect themselves and cope with work overload. workers draw on gendered identities of care, deploy emotional labour, and embody and diffuse systemic pressures by going above and beyond, and filling gaps in care. yet this work aligns with state and capital interests as it allows them to continue to renege their responsibility for care. as feminist scholars have argued, everyday practices of care and commitment have profound economic significance. they are vital to capitalist accumulation and enable the state to withdraw from ensuring the conditions for social reproduction (dyer, mcdowell, & batnitzky, ; katz, marston & mitchell, ; nagar et al., ; pratt, ). sue ferguson and david mcnally argue that the dynamics of contemporary capitalist accumulation are premised on the “continual pressure to deny the (costly) humanity of real people, to deny the ‘excess’ needs thrown up by socially embodied human life and to impose ‘bare life’ instead.” ( , ). this insight can also be applied to contexts of state austerity. restructuring relies on and expends care workers’ bodily, emotional, and mental capacities and life forces to ensure care for others. it is crucially dependent on the unpaid labour of workers, as well as families and volunteers (armstrong et al., ; day, ; seeley, ). it hinges on gendered, racialized, and classed inequities and has uneven outcomes. workers are overworked, stretched thin, and wasted in the process. what workers earn is not even enough to meet their own social reproduction needs. they struggle financially, work two or more jobs, and have no time for themselves or their family. in the context of continuing cutbacks, poor wages, intensifying workloads, and adverse impacts to their health and wellness, many workers wonder what will happen to them as they age. they are concerned for their own future, and having to rely on bare publicly funded care. reflecting the unsustainable conditions that impede new generations from entering or staying in long-term care work, one worn out care worker muses “who will care for us when we are old and our bodies are worn from this work?” while there are different strategies employed in a for-profit and non-profit care facility, the literature (armstrong, armstrong & macleod, ; stinson, pollak & cohen, ; zuberi, a, b) shows that those that emerge from mv are prevalent in facilities with contracted out care and support services. the logic of private, for-profit operators is by definition profit maximization, even if it has particular and contingent manifestations and outcomes in different facilities. the involvement of financial firms, for instance, is an additional layer to privatization which will yield different results because of higher risk, higher return financial practices. it is also crucial to consider that these deficit care contexts and strategies emerge specifically from austere public funding as well as an ideological commitment to privatization. the impact of privatization may be cushioned in private pay settings, where residents simply pay more for better care. as well, in gc, the strategies employed are highly specific to its particular non- profit, charitable, and faith-based associations and management-driven objectives and aims. furthermore, because public facilities have higher funding and staffing levels than contracted facilities, the impacts of restructuring may be cushioned and the institutional strategies to deal with them will be different. this illuminates how restructuring contributes to a two-tiered and wildly inconsistent system where good care is only accessed by those with the money to buy it or those lucky enough to land in high-quality facilities. in this regard, further research could be done to tease apart the particular manifestations of restructuring in different care homes types, and how this contributes to an uneven and inequitable geography of care provision. the state of work and care conditions illuminates the value and priority placed on long- term care. resulting hardship and suffering are the result of deliberate policy decisions, even if this is obscured from the public imaginary. the crisis in care is created through a complex mix of devolution, austerity, privatization, and financialization. it results from for-profit imperatives and high return corporate and financial tactics that skim and squeeze money out of already deficit care operations (burns et al., ). while there are calls to increase funding for long-term care, echoing diana burns and colleagues, and frontline workers in for-profit care, “the issue is not simply how much money goes into adult care but where the money goes” (burns et al., , ). there are also calls by advocates that contracted out work should be brought back in-house to redress the adverse outcomes to work and care that result from contracting out. yet this fails to consider how “in-house” subsidiary companies employ practices akin to subcontractors. attention to the similarities and specificities of the mechanisms of, and work outcomes in subcontracted versus subsidiary companies would be a fruitful avenue for future research to explore. these insights are pertinent given the bc ndp this year committed $ million in seniors’ care but there is little government oversight in terms of facility operations and finances. in this regard, the extent and power of private, corporate, and financial actors, and their tactics, in seniors’ residential care must be seriously questioned, problematized, and put an end to. in the context of a highly insecure, degraded, demanding, and undervalued work, workers in long-term care point out that there are very few people entering this type of work and there is a high rate of turnover in most facilities. there are simply too few gains and too many costs associated with this work. angel, a care worker at mv, claims that new workers come, but after they go through training and realize the heavy workload, they leave. a worker at gc speaks about her work in another facility in a contracted out department: “the workload keeps getting worse and worse, and so many people are quitting. they're always looking for staff because no one wants to work there.” the predominance of casual and part-time positions, low pay, and heavy workload compels workers to look elsewhere for work. recruitment and retention issues are endemic in long-term care and create short staffing concerns in most facilities. the ndp’s recent investment in care aide hours in b.c., requires , full-time equivalent care aide positions to be filled, which will rise to , in the next three years (bc ministry of health in bccpa, ). in b.c., the seniors care sector is expected to be the fastest growing industry. statistics canada estimates there will be double the number of seniors over the age of between and , and workbc estimates , care aide positions will be created, three-quarters of which will be in seniors’ care facilities, and home and community care (bccpa, ). at the same time, care workers point out few people are willing to do this work. given recruitment and retention issues, both mv and gc have been challenged to fill new positions and workers reveal they often continue to work short-staffed because there are not enough staff available to cover sick and vacation time, especially when most workers have two or three often casual jobs to juggle. even while care provision shifts to the home, there is and will always be a need for residential care, particularly as the population ages, because it offers a high level of support and care that cannot be found elsewhere. yet necessary improvements to care, including fair wages and benefits, and supportive work conditions, cannot be made unless those in positions of power take real account and redress of the systemic issue in residential care. improving the quality of care means paying attention to sectoral and workplace conditions. but this is often little considered. for instance, a recent report by the bc care providers association, which represents over non-government seniors’ care organizations (both for-profit and non-profit), obfuscates the key forces at play in the retention and recruitment crisis and helps to maintain the status quo. there is no mention of sector-wide job and income insecurity, poor work conditions, and heavy workloads that stem from rampant privatization and deep austerity. rather the blame for worker shortages is displaced, in one part, to “a lack of awareness of the quality job opportunities and rewarding careers that await future care workers” (bccpa, , ). they outline how jobs in the seniors’ care sector are secure, and the wages and benefits are competitive, but disregard how they deteriorate in contracted out work. they use early childhood educators to compare wages, yet they are one of the lowest paid care workers, earning an average of $ an hour in b.c. as we have seen, the current conceptualization and organization of residential care is unsustainable and unjust. scholars of feminist care ethics point out that giving and receiving good care is vital to human and societal well-being, and must be supported. they ask what is needed to “maintain, continue, and repair our 'world' so that we can live in it as well as possible?” (fisher & tronto, , ). this entails new ways of thinking about how we can thrive in our everyday lives, individually and collectively. how can we revalue and enact care outside of capitalist profit-making imperatives, and economic and financial logics that privilege efficiency and cost-reduction? to counter conceptions of elder care as a burden or drain on the state and society (lanoix, ), we must reconfigure capitalist social and economic relations that render this work, caregivers, and the elderly unproductive and undervalued. for this to occur, there must be a cultural shift in how care is (re)valued, (re)thought, and (re)organized. for joan tronto ( , ), one of the central tasks for people interested in care is to change the overall public value associated with care. when our public values and priorities reflect the role that care actually plays in our lives, our world will be organized quite differently. what has happened to our political and cultural imagination where care is conceptualized and provided in such narrow, impoverished terms, that such a low quality of life has become normalized and often condoned? how is it that residential care is deemed the last and worst option, or a “non-choice” (armstrong et al., )? how can we allow workers to be overworked into exhaustion, disability, early retirement, and without future security? how is it that one-third of care staff in canada report they have no time to talk with residents (armstrong et al., )? can we not think of more expansive, life-fostering models for care, where thriving trumps merely surviving? (lanoix, ). how can we pay attention to the needs, desires, and aspirations of all persons involved in care? (baines & armstrong, ). can an ethics and practice of care be premised on concern for reciprocal relationships, caring towards others, and a more even distribution of human vulnerability and precariousness? (murphy, ). can we remodel facilities as small-scale communities integrated into and integral to wider communities? perhaps this could be a place where residents want to end their days, workers are supported and rewarded, and families and community members want to be involved. these are important questions given an aging population, and large and growing elder care sector. elder care is not a marginal activity, even if it is typically treated as such. it occupies a prominent position in, and ensures the reproduction of, the economies of advanced capitalist countries. the state of long-term care is not inevitable or natural. it is rather a political and policy choice, and can be challenged and changed. frontline workers have the experience and expertise, and intimately know what is needed to improve the conditions of their work and care (armstrong et al., ; diamond, ). when workers are asked what they would like to see change in their work, their responses are not frivolous or unfair. mainly, they want respect, recognition, support, job security, fair remuneration, and a manageable workload. for care workers, a key priority is more staffing to ensure safe, dignified, and quality work and care. even one additional worker makes a difference. and extra pair of hands means more time to feed and toilet residents, and foster their independence in care provision (mcgregor et al., ). workers do not want to keep rushing through care. they want to spend time with residents and be able to attend to their individual needs. workers’ desires align with residents’ perspectives on quality care, which emphasizes relationships, companionship, comfort, and support (aronson & neysmith, ). care workers highlight that care has implications not only for identity but also politics. as katz, marston and mitchell ( , ) argue, if it is through these practices that capitalism and other relations of domination and exploitation, together with their mobile subjects, are produced, maintained, and remade, then they hold the possibility for altering, undermining, and undoing these relations—for making new subjects. at mv, because of the hard work and persistent pressure of dedicated advocate staff, workplace gains have been made, however slight. they have been able to push back against management’s breach of union seniority lists and unpaid attendance at educational workshops. because of workers’ incessant pleas to management to consider the laundry department’s workload and increase staffing hours, management just announced that the laundry department will be under review. one frontline worker has also been tasked to advise the recently hired support service manager about making necessary improvements. to further challenge neoliberalized models of care, and reinvent new ones, care needs to be reconceptualized and reorganized as highly skilled, and socially and economically valued work. it must be moved from an individual or private to collective responsibility and practice. silvia federici calls for the politicization of elder care that “places [it] on the agenda of social justice movements” ( , ). in this regard, elder care is uniquely situated to resist restructuring and rationalization processes as it holds potential to build a wider, more inclusive platform to affect change. it can mobilize not only inter-workplace relations of support and resistance, but also connect to struggles and solidarities across other care facilities, care sector sites, and social reproductive arenas (fraser, ). as conditions of work are conditions of care, effective resistance must bring together workers, residents and their families, as well as broader communities. as kim england ( ) notes, domestic worker advocacy organizations draw on an ethics of care, highlighting personal connections and interdependence in broader relations of care, to make their campaigns visible and forge broader solidarities. in this sense, it is important to connect worker issues with caring issues in order to challenge the underlying forces that impede and erode quality conditions of work and care. inspiration can be gleaned from bentham and colleagues ( ) manifesto for the foundational economy. their work seeks to recentre the economy around the local production of goods and services that support everyday life and wellbeing, such as health and social care, education, and food production. yet they point out that while these sectors employ a massive proportion of the workforce ( % in the uk), and are growing, they are uniformly characterized by insecure, undervalued, low-wage work. the move to a foundational economy entails a shift away from dominant and decontextualized calculations of lowest costs and highest profits, which masks indirect and externalized costs, and overrides long-term and future benefits. for them, a rethinking and refocusing of the economic around tenets of social value, social obligation, and reciprocal social relations is crucial to ensure just, secure, and 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 . have you experienced health issues, injury, or violence related to your work? . does your work impact your home life? . do you feel you have control over, or can give input into the way care is provided? . do you feel supported and respected in your work? . if an issue comes up is it heard and addressed? . what is needed to ensure high quality work and care? . if there was one thing you wish you had more time to do what would it be? . is there anything else you would like to mention that i did not ask? appendix b interview schedule for managers ) tell me about your position. what does your work look like on a typical day? ) what is the model of care followed here? ) how does the organization develop goals and make decisions over its activities and provision of care? ) what is different about this facility than most? what is it that works so well here? ) have there been any major changes at [x] since you started here? ) what are the key challenges the facility faces? a. is the current level of funding and staffing enough to provide quality care? b. how do you manage the funding shortfall? ) have you had to implement any cost-saving measures? what are these? how has this impacted care? ) what is needed to ensure high quality work and care? ) do you have any thoughts about the future of long-term care? ) is there anything else you would like to mention that i did not ask? appendix c interview schedule for family members ) what was caring for [x] like before you came to [x]? a. what were some of the key factors that determined the move here? ) how often do you come to the facility to visit? what does your typical visit look like? ) did you face any barriers to accessing care? ) what was the transition into the facility like? a. is [x] now settled? are you happy with the outcome here? ) how involved are you in [x] care? in what ways? ) do you feel welcome and included here? are you involved in any activities in the home? ) do you pay out of pocket for any additional services? ) have you had any issues here? have they been addressed? ) what does good quality care look like to you? a. are there any changes you would like to see made? 	abstract 	lay summary 	preface 	list of abbreviations 	acknowledgements 	dedication 	chapter : introduction 	 . the personal is political 	 . methodology 	 . care facility sites, spaces, staff, and schedules 	in comparison, gc is known to provide exemplary care, and is “called to serve” and carry out the healing ministry of jesus christ. gc provides holistic, compassionate care in a multicultural, homelike environment. when a visitor enters the facility th... 	at mealtimes, the end of the lounge is occupied by a core group of family members, who sit together and help feed their loved ones. the space of gc pervades a home-like and comfortable feeling. many residents’ rooms are decorated with their own furnis... 	 . thesis structure 	chapter : the restructuring of b.c.’s long-term residential care sector 	 . social reproduction, care, and neoliberalization 	 . devolution and austerity 	 . privatization 	while the government encourages private actors to enter or increase their market share in seniors’ care, there are a myriad of accountability and transparency issues associated with private for-profit operations. increased sectoral reliance on private... 	 . contracting out 	 . financialization 	 . privatizing profits and socializing risks 	chapter : embodied labour and care work reorganization 	 . the labour process and workers’ bodies, subjectivities, and affects 	 . care work: rationalized, intensified, and decontextualized 	maryam: you [would] hold their hand, and sit with them, and listen to them….it is very important to listen to them. 	 . dehumanization: machine work, robot workers, assembly line care 	 . structural violence, mental and emotional labour, and burnout 	 . workers’ strategies of control and care 	 . 	 . 	 . 	 . 	 . 	 . 	 . implications of rationalization for worker and resident wellbeing 	 . 	 . 	chapter : institutional strategies to manage a restructured care sector 	 . case study : mountain view 	 . . contracting out and contract flipping 	 . . cutting labour costs: eroding wages, benefits, and staffing levels 	 . . workload intensification and unpaid overtime 	 . . cost-cutting measures: food, programs, education, and maintenance 	 . . “it’s the budget” or practices of deception, disregard, and denial 	 . case study : gracious care centre 	 . . fundraising for quality of life programs, and juggling funding and staffing 	 . . taking on personal responsibility to manage funding shortfalls 	 . . fostering caring communities and commitments 	 . . workplace support, appreciation, and advocacy 	 . downloading the care deficit to companions, volunteers, and family 	 . implications of institutional strategies for work and care conditions 	chapter : uncertain futures, different futures 	bibliography 	appendices 	appendix a interview schedule for frontline staff 	appendix b interview schedule for managers 	appendix c interview schedule for family members https://www.ejast.org journal of animal science and technology research article j anim sci technol ; ( ): - https://doi.org/ . /jast. . . . pissn - eissn - the effectiveness of group combined intervention using animal-assisted therapy and integrated elderly play therapy taeyoung kil , hak-man kim * and minkyu kim , * institute of agricultural science, chungnam national university, daejeon , korea department of social welfair, woosong university, daejeon , korea division of animal and dairy science, chungnam national university, daejeon , korea mk biotech co., ltd., daejeon , korea abstract the purpose of this study was to investigate the effects of group combined intervention that combined animal-assisted thera- py and integrated elderly play therapy on the depression, self-esteem, and emotional expression of geriatric patients residing in nursing homes. this was achieved by providing cognitive, physical, and emotional activities and social interaction at the same time. the group combined intervention method was applied to twelve elderly patients (six in the control group, six in the experimental group) aged or older who live in a nursing home for the elderly in c province, from may , to june , , for a total of times (once a week, minutes at a time). the quantitative evaluation was analyzed through spss . for comparison before and after the program was implemented, using the korean version of the depression and the self-esteem scale. the qualitative evaluation compared emotional expression pre-test and post-test. the major results of the study were as follows: first, the group combined intervention was effective in reducing depression levels of the experimental group among the elderly patients. second, it was effective in improving the self-esteem of the experimental group among the elderly patients. third, it showed a significant difference in the emotional expression of the experimental group among the elderly patients. therefore, it was found that group combined intervention reduces depression and improves self-esteem and emotional expression of the elderly. based on these results, it is hoped that this study will be a cornerstone in the devel- opment of concrete programs for the benefit of elderly patients living in facilities. keywords: animal-assisted therapy, depression, group combined intervention, integrated elderly play therapy, self-esteem background as of , the elderly population in korea accounted for . % of the total population ( , , people) and has led korea to become the aged society. due to a rapid increase in the elderly population and alienation from family, problems of the elderly such as depression, economic anxiety, and social isolation are becoming more serious. in order to cope with changes in the social structure owing to emergence of the nuclear family, increase in instances of the elderly living alone, and weakening of the healthcare system, the long-term care insurance system was introduced in by the central and local governments. they expanded the care facilities for received: nov , revised: nov , accepted: nov , *corresponding author: minkyu kim, division of animal and dairy science, chungnam national university, daejeon, , korea. tel: + - - - , e-mail: kminkyu@cnu.ac.kr hak-man kim, department of social welfair, woosong university, daejeon , korea. tel: + - - - , e-mail: hakman@hanmail.net this is an open access article distributed under the terms of the creative commons attribution non-commercial license (http://creativecommons.org/licenses/by- nc/ . /) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. copyright © korean society of animal science and technology. https://crossmark.crossref.org/dialog/?domain=pdf&date_stamp= - - &doi= . /jast. . . . mailto:kminkyu@cnu.ac.kr mailto:hakman@ http://creativecommons.org/licenses/by-nc/ . / http://creativecommons.org/licenses/by-nc/ . / group combined intervention program with aat and iept | https://www.ejast.org https://doi.org/ . /jast. . . . the elderly in line with the increasing demand. in this short period, a quantitative infrastructure of facilities was established, but con- flicts the elderly experienced mentally were not considered. issues such as changes in lifestyle, individual differences according to the health condition, decrease in self-esteem due to difficulties and restrictions in daily life, alienation from the family, and depression caused by the death of a spouse were not given enough attention [ ]. among the elderly, depression is caused due to stress, economic problems, loss of social role, health conditions, and social isolation due to changes in family relations. the degree of geriatric diseases became more serious with the increase in age among the elderly in facilities in comparison to the general elderly population [ , ]. in a study on self-esteem, the elderly living in facilities were more depressed than hospitalized patients, had lower self-esteem, and had negative correlations with depression and self-esteem [ – ]. however, intervention programs focusing on specific variables such as depression and self-esteem are relatively insufficient, and it is very important to provide a stimulating environment for active in- tervention in psychosocial difficulties experienced by the elderly in facilities [ ]. in several studies, it was proved that group combined intervention including objective activities was effective in reducing depression and improving the self-esteem of elderly people with geriatric disease or nursing home elderly [ , , – ]. in the clinical field, it has been observed that the elderly will express and reflect their emotions while participating in various activities, which pro- vides opportunities for communication among participating mem- bers and promotes psychological and emotional stability through the establishment of an emotional support system [ , ]. in the past years, various domestic and foreign studies have proposed numerous approaches to combine cognitive rehabili- tation, occupational therapy, physical activity, music therapy, art therapy, recollection therapy, recreation, animal meditation, etc. in order to be more effective interventions [ – ]. the combined intervention program to improve health conditions and quality of life of patients living in geriatric nursing homes is divided into four categories: cognitive activity, physical activity, emotional activity, and social interaction activity [ , ]. it is a combined or complex method of non-drug therapy applied to the subjects. physical, mental, and social rehabilitation of the elderly can improve social function, mental state, and quality of life as well as reduce national costs [ , ]. in animal-assisted therapy (aat), therapy dogs interact with clients in animal assisted interventions, to enhance therapeutic ac- tivities and well-being including the physical, cognitive, behavioral and socio-emotional functioning of clients. well trained therapy dogs exhibit the behavior that human clients construe as friendly and welcoming [ ]. especially, aat can improve physical and mental health; alleviate loneliness; reduce stress, anxiety, and de- pression; promote social interaction through exercise and playful- ness; unconditional love and affection for the elderly. caring for pets is safer than caring for children, restores the active growth and self-esteem of the elderly, and provides them with valuable com- panions [ ]. integrated elderly play therapy (iept) is focused on maintaining an optimal state to prevent or solve psychological and social difficulties by recovering lost abilities or memories. this is achieved by actively participating in play behavior by being con- vinced of the therapeutic power of play, and consists of an integrat- ed approach involving activities such as music, art work, language or literature, physical exercise, cognitive games, living area, and traditional play [ , ]. the complex approach of non-drug therapy has been able to address various requirements of elderly patients, caregivers, and therapists according to the complexity and proreess of geriatric diseases. it has been of increasing interest in clinical fields over the past few years [ , ]. in particular, several studies have been actively conducted to prevent and treat cognitive disorders, mild cognitive disorders, and geriatric diseases without dementia [ , ]. many studies showed that the combined intervention of aat, occupational therapy, play therapy and social interactions was effective in improving quality of life through maintenance of cognitive function, independence in the community, recovery of self-esteem, and reduction of depres- sion in the elderly [ , , , ]. the complex intervention of aat for the elderly with mental pain presented the most reasonable results in the clinical environment [ ]. however, it is difficult to find clinical studies applying complex intervention method to the elderly living in elderly nursing homes with various functional dis- abilities. the combined intervention of aat and play therapy, which has been conducted in various domestic and foreign studies so far, has been found to have a positive effect on the self-esteem of the elder- ly, also reducing depression [ , , , ]. however, it was pointed out that the intervention method is not described in detail and the activities that stimulate the interest and active participation of the elderly are insufficient. in addition, intervention for the elderly in facilities is different depending on the institution. as the people who provide the guidelines, curriculum, and programs differ, quali- tative management of the intervention contents is necessary [ ]. in order to complement the limitations of previous studies and accumulate academic and clinical data, it is expected that the com- bined intervention of aat that aids in the treatment and recovery of mind and body through interaction with animals and iept can be an interesting and effective approach. so far, group combined intervention has been conducted for the precedue of each of the social interaction activities that preserve residual functions, by preventing planned and purposeful phys- https://doi.org/ . /jast. . . . https://www.ejast.org | taeyoung kil, et al. ical activities to improve physical health, cognitive training that reflects the specific cognitive function and requires guidance by the therapist, emotional activities that mainly apply recall therapy, and depression that is related to damage of the cognitive function [ ]. as suggested by fabel et al. [ ], synergies were provided to improve cognitive function and emotion for more positive effects of complex intervention. environments that stimulate cognitively even if physical activity is minimized were also provided. in addi- tion, the use of animals enabled expression of intimate emotions and social interaction to occur more effectively. therefore, two sin- gle intervention methods were combined into a program to reduce depression among the elderly and improve self-esteem. in addition, this study encouraged the individual emotional expression of the elderly participating in the study by providing communication opportunities and enhancing emotional stability among members. this was done in order to supplement quantitative research by us- ing the qualitative research method suggested by a researcher [ ]. this study will investigate the effects of group combined inter- vention including purposeful activities and social interaction on the self-esteem, emotional and mental health of elderly patients with geriatric diseases living in elderly nursing homes. materials and methods subject of study the subjects of this study were elderly geriatric patients who want- ed to participate in the program and were living in a nursing home for the elderly in c province. as shown in table , participants of the program were twelve elderly patients aged or older. six were assigned to the experimental group, and the other six to the con- trol group. of all the subjects in the experimental group, two were men and four were women, and the average age was . years. three of the subjects were agnostics, two were christians, and one was buddhist. three of them were elementary school graduates, two of them were middle school graduates and one of them was a high school graduate. the income level of subjects was three were middle class, two were lower-middle class and one of them was upper-middle class. as the subjects had geriatric diseases and were unable to walk, they were mostly able to participate in wheelchair activities. the control group also participated in six elderly geriatric patients were living in a nursing home that was tested for homoge- neity. there were no issues with the combined intervention (aat and iept) program and there was no difficulty in demonstrating cognitive ability and communication. research design and data collection to verify the effectiveness of the intervention program that com- bines aat and iept, the difference before and after education between the experimental group and the control group was com- pared using the non-equivalent control group pre- and post-test. as demonstrated in table , the pre-test was conducted on the day of intervention, and the post-test was conducted at the time of in- tervention. this study provided a -minute program once a week as a combined intervention method. the researcher, who is an ex- pert in aat and certificated in elderly play therapy, and currently in charge of individual and group programs at a geriatric hospital, cooperated with program design, progress, observation and evalua- table . general characteristics of the experimental group participants gender age religion education income level geriatric diseases activity characteristic a m christian high school graduate lower-middle hypertension, diabetes, stroke the lower limb function is inconvenient, but the upper limb function is good and can be operated by wheelchair. b m christian middle school graduate middle hyperthyroidism, hypernasitis, hypofunction cognitive state and communication is good, and it is possible to take a wheelchair. c f atheist elementary school graduate middle stroke (hemiplegia) although she has mild cognitive impairment, she can participate in the program in a wheelchair. d f buddhist elementary school graduate lower-middle diabetes, minor dementia sometimes she show abnormal behavior, but general communication is possible, and she can act as normal walking. e f atheist elementary school graduate upper-middle stroke a strong will to rehabilitate and active in a wheelchair. f f atheist middle school graduate middle cerebral infarction, wrist fracture a week after entering the hospital, she have a little inconvenience and can participate in the program. m, male; f, female. table . effective verification model of group combined intervention group pre-test intervention post-test experimental group o x ) o control group o - o )multimodal interventional program. pre-test, the day of intervention; post-test, end of intervention. group combined intervention program with aat and iept | https://www.ejast.org https://doi.org/ . /jast. . . . tion. in addition, one assistant with a clinical certificate, two social workers, one occupational therapist, two physical therapists and four care workers were involved to consider the drop-out and to apply effective play therapy to the elderly even after the program had ended. the dogs were vaccinated and dewormed in advance– two poodles over year old and two mixed breeds who were years old were guided by pet therapy experts to participate in the program with sufficient rest, so that they were not exposed to stress caused by the program. data was collected from may to june , with the help of one assistant, two social workers, and three care workers. data related to the study was collected using a structured questionnaire. prior to data collection, the researcher’s identity was revealed to the participants from a standpoint of ethical consideration, and the purpose of the study was specifically explained. the subjects involved were willing to actively participate in the program by in- formed consent. measurement tools depression the korean version of the depression scale, geriatric depression scale short form-korea (gdssf-k) developed by kee [ ], was used as a tool to test the degree of depression. gdssf-k is a stan- dardized scale used for koreans, and its simple implementation and scoring method makes it advantageous when being applied to the elderly. it consists of questions in total, the total score is out of , and the cut-point is based on points. the higher the score, the higher the degree of depression. in this study, cronbach’s α was . . self-esteem self-esteem is an evaluation of one’s self-concept, which is based on one’s overall evaluation of themselves, as they accept themselves positively and perceive themselves as valuable human beings. this method was developed by rogenberg [ ] and translated by jon [ ], and one of the biggest advantages of this scale is that it has been used for a long time in the wide group and has been prov- en to have predictive and constructive validity. the scale used in this study consists of questions, five of which were positive and five were negative. for positive questions, the score was measured on a -point likert scale ( = not at all, = very yes), and negative questions were scored by reverse coding. the score ranged from to , which means that higher the score, higher the self-esteem. in this study, cronbach’s α of self-esteem was . . qualitative research tools: classification of emotions using words emotional word classification is used to provide opportunities for communication among members and to promote emotional stability. this is accomplished by checking the basic category of an individual’s emotions, using words frequently used by koreans in their emotional expression as a basic list. the five emotional words used by the program participants were expressed on a -point basis, and the emotions expressed by six elderly patients in each group were classified into positive and negative emotional words, as demonstrated in table . this method was used to complement quantitative evaluation in various clinical settings [ , ]. group combined intervention program (aat and iept) the group combined intervention program is a combination of two single intervention methods: aat and iept. based on the results of verifying the effectiveness of combined intervention at home and abroad to help elderly patients living in nursing homes recover their self-esteem and reduce depression, based on the clini- cal analysis and evidence collection [ , ]. each session comprised a single intervention program com- bined with cognitive, physical, emotional, and social interaction activities. the contents of the program are displayed in table . results comparison of depression levels before and after im- plementing the group combined intervention program on comparing the results of the experimental and control group before and after the implementation of the group combined in- tervention program, we can observe that the average changes in depression levels exhibited by the experimental group were more substantial than the average changes exhibited by the control group. the mean values and standard deviation of each group were analyzed to determine the effects of the group combined interven- tion program on the depression levels of the elderly patients. as demonstrated in table , the depression levels of the experimental table . emotional word classification positive emotional expressions neutral emotional expressions negative emotional expressions enjoyment, pleasure, happiness, satisfaction, warmth, sense of accomplishment, expectation, ecstasy, interest, excitement, impressive, interesting etc. surprise, hardness, flat, extraordinary etc. disappointment, sadness, stifling, frustration, unhappiness, irritability, loneliness, dreariness, anger, fear, unfairness, regret, terrible, painfulness, guilt, suffering, worry, discomfort, no desire, futility, etc. https://doi.org/ . /jast. . . . https://www.ejast.org | taeyoung kil, et al. group significantly decreased by . ± . and . ± . , re- spectively (p < . ). comparison of self-esteem before and after implement- ing the group combined intervention program in table , on comparing the results of the experimental and control group before and after the implementation of the group combined intervention program, we can observe that the average changes in self-esteem exhibited by the experimental group were more substantial than the average changes exhibited by the control group. the results on comparing the self-esteem scores based on the scale by rogenberg [ ], were as follows. the mean values and standard deviation of each group significantly increased to . ± . and . ± . , respectively (p < . ). qualitative study: expression of emotions using words the application of group combined intervention in this study has a small number of samples and is limited to measure only quanti- tative evaluations due to the nature of psychological intervention. therefore, the expression of emotion through words before and after the program was analyzed to supplement this. five emotions were selected by each individual member of the experimental and control group and the degree of emotion was expressed on a -point basis. among the emotions expressed by the six elderly patients in the experimental group, were positive, were neutral, and were negative. the most common positive expressions in the experimental group were happiness, enjoyment, interest, pleasure, excitement, whereas negative expressions were sadness, misfortune, painfulness, frustration, and regret. among the emotions expressed by the six elderly patients in the control group, were positive, were neutral, and were negative. the most common negative expressions in the control group were irri- tated, frustrated, angry, and unmotivated. the results of comparing and analyzing the pre-test and post-test scores by dividing the table . contents of group combined intervention program stage (session) goal combined intervention activity and integration foundations by session session activities initial ( – ) lapo formation ice-breaking to form intimacy and trust between group members, play therapists and therapy dogs - making name tag/introducing myself and learning names of friends (iept-social interaction activity) - who are you?/singing (iept-emotional activity) - greeting a friend/singing rounds (iept-social interaction activity) - coloring the pictures of the puppies on the printing paper (iept-emotional activity) - explaining and sharing feelings on the therapy dogs (aat-cognitive activity) middle ( – ) the approaching activities of combined intervention - cognitive activity - physical activity - emotional activity - social interaction activity - ensemble with maracas/our puppy is a shaggy puppy (iept-physical activity) - greeting the therapy dogs and skin ship (aat-emotional activity) - hansam play and chair exercises (iept-physical activity) - remembering therapy dogs (aat-cognitive activity) - learning how to brush and massage a therapy dog (aat-social interaction activity) - hands-on games/prevention of dementia by finger yoga (iept-physical activity) - sending compliments and words of blessing (iept-social interaction activity) - listening to music with a therapy dogs/flower waltz (aat-social interaction activity) - talking about traditional story ‘the dog and the cat’ (iept-cognitive activity) - making a snack for therapy dogs (aat-emotional activity) - sympathizing with the therapy dogs (aat-social interaction activity) final ( – ) activity and preparation for finishing the program discussion and exchanged opinions about the program, sharing joyful experiences and precious memories, feedback and reviews - therapy dogs grooming/collage (iept-physical activity) - matching emotions with the therapy dogs (aat-social interaction activity) - making memory albums (iept-emotional activity) - you are flower, i am flower (iept-emotional activity) - share thoughts on the participation of the integrated intervention and closing iept, integrated elderly play therapy; aat, animal-assisted therapy. table . the effects of group combined intervention program on depression in elderly patients variables group(n = , each group) pre-test (mean ± sd) post-test (mean ± sd) depression experiment . ± . a . ± . b control . ± . a . ± . a a,bwithin rows, values with different superscripts are significant different (p < . ). table . the effects of group combined intervention program on self- esteem in elderly patients variables group(n = , each group) pre-test (mean ± sd) post-test (mean ± sd) self-esteem experiment . ± . a . ± . b control . ± . a . ± . a a,bwithin rows, values with different superscripts are significant different (p < . ). group combined intervention program with aat and iept | https://www.ejast.org https://doi.org/ . /jast. . . . emotional words expressed by the elderly into positive and negative expressions are demonstrated in table . discussion the purpose of this study was to investigate the effects of group combined intervention on depression and self-esteem of geriatric patients living in a nursing home for the elderly in c province. the group combined intervention program combining aat and iept was implemented once a week for minutes. it included objective cognitive, physical and emotional activities as well as social inter- action activities, and was conducted over sessions. the subjects of this study were twelve patients aged or older. six patients were assigned to the experimental group and six to the control group. to verify the effectiveness of the combined intervention, the korean version of the depression scale for the elderly developed by rogenberg [ ] was used. self-esteem was analyzed using the scale adapted by jon [ ]. for qualitative analysis, emotional word classification was used, and the main results are as follows. first, the group combined intervention program combining aat and iept was effective in reducing depression levels of the elderly patients. these results are based on the results of studies by lee et al. [ ] and kim et al. [ ], who applied the combined intervention method to elderly patients with early dementia, and kim et al. [ ] who applied the combined intervention method to the elderly with high depression levels using elderly welfare centers. it can be inferred that this method helps to maintain an optimal state and aids in preventing or solving psychosocial difficulties. this is achieved by active participation of the study subjects and with confidence in the application of aat and iept, which are single intervention methods. second, the group combined intervention program combining aat and iept was effective in improving the self-esteem of the elderly patients. the results are based on results by burgener et al. [ ], which showed that this study was effective in improving self-esteem through positive changes, such as the application of complex intervention on the elderly with low self-esteem using mental health centers kim [ ] and in the case of kim [ ] who applied complex intervention on the elderly living alone. there was also a reported improvement in social behavior by applying complex intervention on the elderly with early dementia. thus, we can infer that it is very important to optimize the power of inter- vention methods and provide a rich environment by applying an essential model based on complex intervention in order to improve factors such as self-esteem, which are necessary for a healthy and balanced mental state. third, the combined intervention program implemented in this study showed a significant difference in the emotional expression of the elderly patients before and after the program. the elderly patients who were assigned to the experimental group expressed a lot of positive emotions, using words such as happiness, pleasure, interest, enjoyment, and excitement. it provided them an oppor- tunity to experience various emotions by expressing the negative feelings they had suppressed. based on the summarized results, our suggestions are as follows. first, psychotherapy with the intervention of the treatment assistance dogs was not harmful or negative to the elderly having mental pain, and the most reasonable result was demonstrated in clinical environments requiring intervention [ ]. however, in the past, single intervention aat was generally combined with occu- pational therapy, art therapy, music therapy, spiritual training, and exercise. as this study demonstrates, iept adopted as a single in- tervention method can play an important role as a new alternative for improving lost abilities, recovering memories, fostering positive interpersonal relationships and improving social function because integrated approach activities such as music, art work, language literature, physical exercise, cognitive games, life, traditional play, and hand-on play are possible. therefore, it is necessary to expand the combined intervention methods of aat and iept as they are preventively effective, highly accessible, and clinically significant. second, it is very important to know which non-drug therapy is mediated as well as how it is mediated in a group combined inter- vention [ ]. it is demonstrated that structured group intervention can eliminate negative factors to improve social participation and relationships of the elderly [ ]. despite the fact that competence of experts in group intervention is very important, there are not many studies that objectively determine this. consequently, multi- disciplinary clinical studies should be conducted in order to apply complex intervention of aat and iept to various groups. also, the most important factor for group combined interventions to be successful is the need to cultivate professionals who will provide professional services. this can be facilitated through the interaction of therapists and subjects in various fields of study. third, after introducing the treatment dogs at the nursing home, it was deduced that the therapeutic benefits to the elderly patients’ mental health could be extended by increasing the opportunity of interactions with the caregivers and animals as well as elderly pa- table . the change of emotion before and after the application of group combined intervention program participant in elderly patients variables pre-test(mean ± sd) post-test (mean ± sd) t-value positive emotion . ± . a . ± . b . negative emotion . ± . a . ± . b – . a,bwithin rows, values with different superscripts are significant different (p < . ). https://doi.org/ . /jast. . . . https://www.ejast.org | taeyoung kil, et al. tients having dementia [ ]. in addition, the use of therapy animals in institutions and residential facilities and the combined interven- tion including animals demonstrated an increase in social interac- tion and language use in comparison to traditional treatments. it was also found that they served as motivators to encourage active participation in programs [ ]. other studies have been contin- uously trying to implement alternative treatment strategies that bring humans and animals together, as it also allows elderly people to care for weaker animals in a pleasant environment, fostering so- cial contact, spiritual training, exercise, and play [ ]. therefore, it is anticipated that discussions on policy support will soon make it possible to provide programs for the elderly in various institutions or facilities that require group combined intervention. this study is meaningful as it demonstrates the possibility of effective and appropriate therapeutic intervention and fusion re- search, by verifying the effect on depression and self-esteem of geriatric patients residing in geriatric nursing homes, applying the group combined intervention of aat and iept. however, the limitations of this study for generalization of the results are as fol- lows. for generalization and validation of the study, appropriate samples were obtained and tests were conducted before and after implementing the intervention methods to compare both groups considering the expansion of subjects and socio-demographic characteristics. however, it is expected that pre-tests, post-tests, and follow-up tests will be conducted to verify the continuous effect of complex intervention in future studies. in addition, it is suggested that further studies should be conducted on the experi- mental group and strict allocation methods need to be utilized to determine the value and cost-rate of group combined intervention. competing interests no potential conflict of interest relevant to this article was reported. funding sources this work was supported by research fund of chungnam national university. acknowledgements not applicable. availability of data and material upon reasonable request, the datasets of this study can be available from the corresponding author. authors’ contributions conceptualization: kil ty. data curation: kim mk. formal analysis: kim mk. methodology: kil ty, kim hm. software: kim mk. validation: kim hm. investigation: kil ty. writing - original draft: kil ty. writing - review & editing: kil ty, kim hm, kim mk. ethics approval and consent to participate not applicable. orcid taeyoung kil https://orcid.org/ - - - x hak-man kim https://orcid.org/ - - - minkyu kim https://orcid.org/ - - - references . kang ms. a psychological study on the adaptation process of inpatients in nursing homes. korean soc gerontol soc welf. ; : - . . blazer d. depression in the elderly. n engl j med. ; : - . . lee jh. the effect of group music program on depression in the institutionalized elderly. j korean gerontol nurs. ; : - . . choi ya. a survey on the depression, self-esteem and health behavior of the aged. korean j gerontol soc welf. ; : - . . 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. yamaguchi h, maki y, yamagami t. overview of non‐phar- macological intervention for dementia and principles of brain‐ activating rehabilitation. psychogeriatrics. ; : - . . logsdon rg, mccurry sm, teri l. evidence-based interven- tions to improve quality of life for individuals with dementia. alzheimers care today. ; : - . . graff mj, adang em, vernooij-dassen mj, dekker j, jons- son l, thijssen m, et al. community occupational therapy for older patients with dementia and their care givers: cost effec- tiveness study. bmj. ; : - . . jones ml, richmond s. initial tooth movement: force appli- cation and pain–a relationship? am j orthod. ; : - . cultivating healthy places and communities: evidenced-based nature contact recommendations | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / . . corpus id: cultivating healthy places and communities: evidenced-based nature contact recommendations @article{largowight cultivatinghp, title={cultivating healthy places and communities: evidenced-based nature contact recommendations}, author={erin largo-wight}, journal={international journal of environmental health research}, year={ }, volume={ }, pages={ - } } 	erin largo-wight 	published 	sociology, medicine 	international journal of environmental health research cultivating healthful places is an important public health focus. [...] key result a multidisciplinary review was conducted in several fields of study and findings were organized into public health recommendations: ( ) cultivate grounds for viewing, ( ) maintain healing gardens, ( ) incorporate wooded parks and green space in communities, ( ) advocate for preservation of pristine wilderness, ( ) welcome animals indoors, ( ) provide a plethora of indoor potted plants within view, ( ) light rooms with bright…expand view on taylor & francis community.oen.ca save to library create alert cite launch research feed share this paper citationshighly influential citations background citations results citations view all topics from this paper 	community 	trees (plant) 	sound - physical agent 	gardening 	park (environment) 	used quit cigarette smoking videos 	pet animal citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency contribution of urban vegetable gardens to health 	a. isabel., mejías moreno 	geography 	 	 save alert research feed the health benefits of urban green spaces, a literature review 	mohammad mehdi sadeghian 	 	 	view excerpt, cites background save alert research feed caring local biodiversity in a healing garden: therapeutic benefits in young subjects with autism 	a. scartazza, maura mancini, + authors a. massacci 	psychology 	 	 save alert research feed health-affirming landscapes and sustainable architecture of modern schools 	m. trojanowska 	sociology 	 	 	view excerpt, cites background save alert research feed healing gardens in children’s hospitals: reflections on benefits, preferences and design from visitors’ books 	a. reeve, katharina nieberler-walker, cheryl desha 	medicine, sociology 	 	 	pdf save alert research feed potential health benefits of nature-based interventions in the work environment during winter. a case study 	katinka h. evensen, r. k. raanaas, g. patil 	geography 	 	 	view excerpts, cites background save alert research feed health by design: interweaving health promotion into environments and settings 	a. springer, a. evans, jaquelin ortuño, d. salvo, maria teresa varela arévalo 	medicine 	front. public health 	 	 	 save alert research feed therapeutic qualities and sustainable approach to heritage of the city. the coastal strip in gdańsk, poland 	m. trojanowska 	geography 	 	 save alert research feed making meaning of urban greening in the anthropocene 	t. eisenman 	geography 	 save alert research feed enabling relationships with nature in cities 	j. colding, m. giusti, andreas haga, m. wallhagen, s. barthel 	 	 	 save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency healthy places: exploring the evidence. 	h. frumkin 	geography, medicine 	american journal of public health 	 	 	pdf save alert research feed healthy nature healthy people: 'contact with nature' as an upstream health promotion intervention for populations. 	cecily j. maller, m. townsend, a. pryor, p. brown, l. st leger 	psychology, medicine 	health promotion international 	 	 	pdf 	view excerpt, references background save alert research feed "cultivating health": therapeutic landscapes and older people in northern england. 	c. milligan, a. gatrell, a. bingley 	sociology, medicine 	social science & medicine 	 	 	pdf 	view excerpts, references background save alert research feed creating healthy communities, healthy homes, healthy people: initiating a research agenda on the built environment and public health. 	s. srinivasan, l. o’fallon, a. dearry 	medicine 	american journal of public health 	 	 	pdf 	view excerpt, references background save alert research feed greening healthcare: practicing as if the natural environment really mattered. 	k. irvine, s. warber 	psychology, medicine 	alternative therapies in health and medicine 	 	 save alert research feed stress-reducing effects of indoor plants in the built healthcare environment: the mediating role of perceived attractiveness. 	k. dijkstra, m. pieterse, a. pruyn 	medicine 	preventive medicine 	 	 save alert research feed evaluating a children's hospital garden environment: utilization and consumer satisfaction 	s. whitehouse, j. varni, + authors robyn s mehlenbeck 	psychology 	 	 	pdf 	view excerpts, references background save alert research feed worksite health promotion programs with environmental changes: a systematic review. 	l. engbers, m. v. van poppel, m. c. a. chin a paw, w. van mechelen 	psychology, medicine 	american journal of preventive medicine 	 	 save alert research feed the intersection of urban planning, art, and public health: the sunnyside piazza. 	j. semenza 	sociology, medicine 	american journal of public health 	 	 	 save alert research feed horticultural therapy: the ‘healing garden’and gardening in rehabilitation measures at danderyd hospital rehabilitation clinic, sweden 	i. söderback, m. söderström, elisabeth schälander 	medicine 	pediatric rehabilitation 	 	 	pdf 	view excerpts, references background save alert research feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue treatment strategies for the behavioral symptoms of alzheimer&# ;s disease: focus on early pharmacologic intervention treatment strategies for the behavioral symptoms of alzheimer’s disease: focus on early pharmacologic intervention manju t. beier, pharm.d., fascp the impact of behavioral symptoms associated with alzheimer’s disease is substantial. these symptoms contribute to diminished quality of life for patients and caregivers and increase the cost of care in nursing homes. early recognition of behavioral symptoms and appropriate treatment are important for successful management. nonpharmacologic strategies remain the cornerstone of the management of alzheimer’s disease–related behavioral symptoms. however, nonpharmacologic strategies may not be effective for problem behaviors, and pharmacologic intervention may be necessary. relevant articles were identified through various medline searches with no date restrictions, with an emphasis on recent studies that used cholinesterase inhibitors and memantine. additional reports of interest were identified from the reference lists of these articles. to facilitate cross-study analyses in the review of cholinesterase inhibitors and memantine, the database search was l i m i t e d t o r a n d o m i z e d , p l a c e b o - c o n t ro l l e d t r i a l s t h a t u s e d t h e neuropsychiatric inventory to assess behavioral symptoms of alzheimer’s disease. overall, evidence from trials of cholinesterase inhibitors and memantine suggests that when these agents are optimized for the various stages of alzheimer’s disease, they can also prevent the emergence of neuropsychiatric symptoms. although results from the literature are not uniformly positive, cholinesterase inhibitors have been shown to produce significant improvements in behavioral symptoms in patients with both mild- to-moderate and moderate-to-severe alzheimer’s disease. evidence also indicates that memantine might be of benefit as an adjunct to long-term cholinesterase inhibitor treatment in patients with moderate-to-severe alzheimer’s disease and that memantine monotherapy may have some beneficial effects on behavior in patients with mild-to-moderate disease. of importance, although no direct comparisons have been performed, these agents seem to have an improved safety and tolerability profile compared with the frequently used antipsychotic drugs. when nonpharmacologic strategies are deemed insufficient to ease problem behaviors in patients with alzheimer’s disease, treatment with cholinesterase inhibitors, alone or in combination with memantine as appropriate for the stage of disease, may be considered as a first-line option in the early pharmacologic management of alzheimer’s disease–related behavioral symptoms. key words: neuropsychiatric inventory, alzheimer’s disease, behavior, cholinesterase inhibitors, memantine. (pharmacotherapy ; ( ): – ) pharmacotherapy volume , number , outline nonpharmacologic management of behavioral symptoms pharmacologic management of behavioral symptoms literature review methodology cholinesterase inhibitors memantine other pharmacologic treatments discussion conclusion alzheimer’s disease is a degenerative brain disorder that causes cognitive decline, loss of f u n c t i o n , a n d e m e rg e n c e o f b e h a v i o r a l o r neuropsychiatric symptoms. it is the most common cause of dementia in the united states, affecting about . million americans in , and is most prevalent in the elderly, occurring in % of the population aged – years, % of the population aged – years, and in almost % o f s e n i o r s a g e d y e a r s o r o l d e r. alzheimer’s disease is particularly common among nursing home residents, with more than half of those aged years or older having alzheimer’s disease or related dementias. alzheimer’s disease follows a predictable course that usually begins with memory loss. as the disease progresses, cognitive impairment becomes profound and daily functioning skills decline. although typically thought of as indicative of late-stage disease, behavioral symptoms can appear early in the course of the disease, well before clinical diagnosis. these s y m p t o m s c a n i n c l u d e s o c i a l w i t h d r a w a l , depression, paranoia, and mood changes. a study of the natural history of alzheimer’s disease showed that % of patients demonstrated symptoms of depression an average of months before diagnosis (figure ). as the disease advances, symptoms such as anxiety, irritability, and agitation become more pronounced. nearly % of patients with alzheimer’s disease develop behavioral symptoms during their illness ; as many as % have symptoms of mild depression, and up to % experience anxiety. the behavioral aspects of alzheimer’s disease are highly distressing for the patient. symptoms of agitation (including inappropriate motor activity), apathy, and psychosis (e.g., hallucina- tions) are common and are exacerbated in the presence of the patient’s existing disabilities. behavioral symptoms further erode independence and engender feelings of fear, anger, and frus- tration. in a survey of patients with alzheimer’s disease in residential care in the united kingdom, loss of self-esteem and feelings of fear, bewil- derment, and frustration contributed to depres- sion and withdrawal. more distressing symptoms, such as agitation, violence, incontinence, and wandering, often prompt nursing home placement. behavioral symptoms are also a major source of stress for the caregiver. behavioral disturbances have been shown to be a strong predictor of caregiver burden and are associated with increased financial hardship for the caregiver (e.g., loss of income, out-of-pocket expenses for formal health care or excess costs related to the caregivers’ health problems). indeed, caregivers o f p a t i e n t s w i t h a l z h e i m e r ’s d i s e a s e o f t e n consider behavioral and psychiatric symptoms to be the most challenging and distressing aspects of the disease. nonpharmacologic management of behavioral symptoms nonpharmacologic interventions have the potential to reduce the frequency and severity of behavioral symptoms in patients with dementia who reside in nursing homes. – although the choice of technique depends on the target behavioral symptom, nonpharmacologic tech- niques target three broad problems: behaviors caused by unmet patient needs, those caused by from the college of pharmacy, university of michigan, and geriatric consultant resources llc, ann arbor, michigan. dr. beier has received speaker honoraria from and has served as a consultant for forest pharmaceuticals, st. louis, missouri, pfizer inc., new york, new york, and eisai inc., teaneck, new jersey. address reprint requests to manju t. beier, pharm.d., fa s c p, g e r i a t r i c c o n s u l t a n t r e s o u rc e s l l c , commonwealth boulevard, suite , university of michigan, ann arbor, mi ; e-mail: tanja@umich.edu. figure . onset of behavioral symptoms of alzheimer’s disease relative to time of diagnosis. (from reference .) months before and after diagnosis p re va le n c e o f p a ti e n ts (% ) managing behavior in alzheimer’s disease beier aggravating factors, and those caused by ill-suited environments. for example, removing any medical causes of problem behaviors (e.g., pain and delirium), reducing any excess stimulation in the environment, and eliminating any known triggers may reduce physical and verbal aggres- sion. use of nonpharmacologic techniques to manage behaviors in the nursing home helps physicians, pharmacists, nurses, and staff begin to view behaviors as symptoms of underlying medical and environmental problems. a group of authors showed that implementation of an education program that trained providers (e.g., nursing home staff, physicians, nurses, nursing assistants, and other direct care staff) in the use o f s t ru c t u re d g u i d e l i n e s t o i m p ro v e t h e management of behavioral problems and to minimize the use of antipsychotic drugs reduced the number of days of antipsychotic drug use by %, with no increase in behavioral symptom frequency. therefore, nonpharmacologic strategies can have meaningful benefits, such as a reduced need for psychotropic drugs. table s u m m a r i z e s s o m e o f t h e c o m m o n l y u s e d nonpharmacologic techniques and their associated outcomes. several small studies have shown the often significant benefits of nonpharmacologic interventions, such as music therapy, , massage or aromatherapy, , and pet therapy. , the current limitations in our understanding o f t h e e ff e c t i v e n e s s o f n o n p h a r ma c o l o g i c therapies for the management of behavioral systems in patients with alzheimer’s disease result from difficulties in recruiting patients for l a rg e - s c a l e , r a n d o m i z e d s t u d i e s o f t h e s e treatments. this is generally due to reluctance of caregivers and/or nursing home personnel, problems with implementation of treatments resulting from limitations in communication with patients, and insufficient funding. despite these limitations, nonpharmacologic interventions are the preferred first step in the management of behavioral symptoms. however, these approaches are not always completely effective. when this is the case, pharmacologic therapy should be considered. table . nonpharmacologic interventions for behavioral symptoms of alzheimer’s disease intervention type outcome sensory stimulation evidence exists that aural and physical stimulation music therapy , can significantly reduce agitation and aggression. touch therapy (e.g., massage) , light therapy may aid sleep disorders and lessen bright-light therapy , severity of sundowning.a social contact one-to-one contact real or simulated social contact can decrease verbal pet therapy , agitation, aggression, and other disruptive behaviors; simulated presence therapy (audio or in some studies, effect reached statistical significance. video of family) , environment ensure environment is safe (remove sharp environmental intervention can decrease verbal and edges, install safety locks and grab bars) physical aggression; may reduce wandering or pacing. do not overstimulate patients (reduce glare and noise) orientation maintain a daily routine , orientation intervention can significantly increase allow patient independence (wash and dress nondependency in activities of daily living and themselves, keep personal possessions) promotes independence; can also reduce disruptive simplify all tasks (give instructions, complex behavioral symptoms. tasks should be attempted in stages) provide calendars, clocks, and newspapers to orient time distract and redirect patients as needed , remove physical restraints recreation exercise programs recreation can decrease agitation and aggression; walking , in some studies, effect reached statistical significance. sorting group activities, games, and singing , asundowning is defined as recurring confusion and increased agitation in the late afternoon or early evening. adapted from reference . pharmacotherapy volume , number , pharmacologic management of behavioral symptoms the neurobiologic basis for the effects of cholinesterase inhibitors and memantine on the behavioral symptoms of alzheimer’s disease remains unclear. nevertheless, studies have alluded to potential substrates for some of the emotional disturbances of alzheimer’s disease and their response to cholinesterase inhibitors. for example, dysfunctions in the limbic and paralimbic cortices have been associated with various neuropsychiatric disturbances in patients with alzheimer’s disease. moreover, atrophy of the occipital lobe has been associated with visual hallucinations ; hypoperfusion of the frontal and temporal regions has been linked to apathy, delusions, and aggression – ; and hypoperfusion of the orbitofrontal cortex has been related to apathy, disinhibition, irritability, and euphoria. , in addition, similarities between the neuro- psychiatric symptoms of alzheimer’s disease and anticholinergic toxicity, as well as the reported anatomic distribution of cholinergic deficits in p a t i e n t s w i t h a l z h e i m e r ’s d i s e a s e , l i n k c h o l i n e rg i c a b n o r m a l i t i e s t o b e h a v i o r a l disturbances. specific studies, of course, are required to elucidate the precise mode of action whereby cholinesterase inhibitors affect behavior. however, it could be postulated that through their ability to ameliorate cholinergic deficits and/or stabilize or increase cerebral blood flow, – cholinesterase inhibitors might facilitate changes that positively affect behavior in patients with alzheimer’s disease. similarly, reports demonstrating that glucose metabolism is altered in the frontal, parietal, a n d / o r t e m p o r a l l o b e s o f p a t i e n t s w i t h alzheimer’s disease who experience agitation, a n x i e t y, o r d e l u s i o n s , , m i g h t s u g g e s t hypothetic targets for the effect of memantine on behavior. again, dedicated studies are needed to determine the specific mechanisms involved in the effects of memantine on the behavioral symptoms of alzheimer’s disease. literature review methodology randomized, placebo-controlled clinical trials that evaluated the effectiveness of cholinesterase inhibitors and/or memantine for the treatment of alzheimer’s disease–related behavioral symptoms were identified using the following methods. medline searches were carried out using the t e rm s a l z h e i m e r ’s o r a l z h e i m e r, a n d neuropsychiatric or npi or neuropsychiatric inventory, with no date restrictions. abstracts or, where necessary, complete articles were reviewed t o d e t e r m i n e w h e t h e r t h e s t u d y u s e d a cholinesterase inhibitor and/or memantine for treatment and whether the neuropsychiatric inventory was used to evaluate symptoms. other reports and abstracts of interest, which used the neuropsychiatric inventory, were identified from the reference lists of these articles. the literature search was current as of august . as this review did not constitute a formal meta-analysis of the data, no assessments for the possible effect of publication bias were performed. r e s t r i c t i n g t h e re v i e w o f c h o l i n e s t e r a s e inhibitors and memantine to trials that used the neuropsychiatric inventory was necessary to allow analysis of efficacy across different studies. the neuropsychiatric inventory is a specific m e a s u re f o r t h e f re q u e n c y a n d s e v e r i t y o f n e u ro p s y c h i a t r i c o r b e h a v i o r a l s y m p t o m s associated with alzheimer’s disease. the original -item neuropsychiatric inventory assesses delusions, hallucinations, agitation/aggression, depression/dysphoria, anxiety, euphoria/elation, apathy/indifference, disinhibition, irritability/ lability, and aberrant motor behavior, with each item being scored from – . a -item version, specifically modified for nursing home re s i d e n t s a n d c a l l e d t h e n e u ro p s y c h i a t r i c inventory nursing home version or neuro- psychiatric inventory–nh, is also commonly used, and assesses all of the above items with the addition of nighttime behavior and appetite or eating disorders. , the total score ranges for the -item neuropsychiatric inventory and - item neuropsychiatric inventory–nh are – and – , respectively, with higher scores indicating greater behavioral impairment. to put the neuropsychiatric inventory scale i n t o t h e c o n t e x t o f t h i s a rt i c l e , a s t u d y o f behavioral changes in patients with alzheimer’s disease showed a mean total -item neuro- psychiatric inventory score of . for mild a l z h e i m e r ’s d i s e a s e ( m i n i - m e n t a l s t a t e examination [mmse] score – ), . for moderate alzheimer’s disease (mmse score – ), and . for severe alzheimer’s disease (mmse – ) among their enrolled patients. at present, it is still unclear how much of an absolute change in neuropsychiatric inventory s c o re c o n s t i t u t e s a c l i n i c a l l y m e a n i n g f u l improvement. as a result, for each randomized, placebo-controlled study reviewed, the baseline neuropsychiatric inventory score has been reported to allow interpretation of the change managing behavior in alzheimer’s disease beier from baseline. although the approach used for selection of trials included in this review of cholinesterase inhibitors and/or memantine was aimed at facilitating comparison of results obtained with different drugs, it must be acknowledged that d i ff e re n c e s i n t h e d e s i g n a n d re p o rt i n g o f findings in different studies still limits such comparisons. one group of authors recently reviewed limitations in the design and reporting of results in all controlled clinical trials of cholinesterase inhibitors for patients with alzheimer’s disease. many of the studies re v i e w e d i n t h i s re v i e w a rt i c l e w e re a l s o evaluated by these investigators. although a detailed analysis of the study design, data analysis, and approaches to reporting of results is beyond the scope of this review, it is nevertheless i m p o rt a n t t o c a u t i o n re a d e r s a b o u t t h e limitations of comparing different drugs without the benefit of results from direct head-to-head comparison studies. cholinesterase inhibitors the cholinesterase inhibitors—donepezil, galantamine, and rivastigmine—are all approved b y t h e u n i t e d s t a t e s f o o d a n d d r u g administration (fda) for the treatment of mild- t o - m o d e r a t e a l z h e i m e r ’s d i s e a s e a n d a re recommended as first-line treatment for patients in these stages of the disease. in clinical trials, these agents have been shown to positively affect t h e c o g n i t i v e a n d f u n c t i o n a l s y m p t o m s o f a l z h e i m e r ’s d i s e a s e a n d c a n a l s o p ro v i d e behavioral benefits to patients with this disease. – indeed, a recent review of the pharmacologic treatment of behavioral symptoms in dementia (including vascular and lewy body dementia) with cholinesterase inhibitors indicated that most s t u d i e s re p o rt e d s m a l l , b u t s t a t i s t i c a l l y significant, benefits on behavioral symptoms. mild-to-moderate alzheimer’s disease randomized, placebo-controlled clinical studies that used the neuropsychiatric inventory to assess the effects of cholinesterase inhibitors on behavior in patients with mild-to-moderate alzheimer’s disease have been published for donepezil and galantamine, , , but not for rivastigmine. in the donepezil study, patients received donepezil for weeks in the open-label phase; they were then randomly assigned to receive either donepezil mg/day or placebo for an additional weeks. in the open-label phase, a significant decrease was noted in total neuropsychiatric inventory scores at weeks and compared with baseline (p< . ). at w e e k , a l l o f t h e i n d i v i d u a l b e h a v i o r a l symptoms, including agitation, anxiety, apathy, depression, and delusions, had significantly improved compared with baseline (p< . ), with the exception of elation. patients who received donepezil after randomization (weeks – ) continued to improve, whereas those patients receiving placebo had a worsening of behavioral symptoms, leading to an absolute treatment difference of . points by week (treatment difference p= . ; table ). caregiver distress associated with behavioral symptoms also worsened in caregivers of placebo-treated patients during weeks – , but improved in caregivers of patients treated with donepezil (treatment difference p= . ). t h e e ff i c a c y o f g a l a n t a m i n e i n re d u c i n g behavioral symptoms in patients with mild-to- moderate alzheimer’s disease was evaluated in two randomized, placebo-controlled clinical trials. , the first assessed the efficacy of m o n t h s o f t re a t m e n t w i t h t h re e d o s e s o f galantamine ( , , and mg/day) or placebo. after months, neuropsychiatric inventory scores remained at baseline severity in patients who received treatment with galantamine either or mg/day, but increased from baseline in patients receiving the lowest dose of mg/day (mean + . points) or placebo (mean + . points). in the other trial, a -month flexible- dose study, neither galantamine or mg/day nor placebo resulted in a substantial change from baseline in neuropsychiatric inventory scores. that no effect on behavior was seen in the latter trial was likely due to the short study duration and the exclusion of patients with behavioral problems at baseline. recently, the effectiveness of donepezil and galantamine for treating problem behaviors was directly compared over weeks in patients with m i l d - t o - m o d e r a t e a l z h e i m e r ’s d i s e a s e . although the effect on behavioral symptoms was a secondary outcome of the study, and no data were presented in the published article, the authors stated that assessment of the mean change in neuropsychiatric inventory demon- strated no significant difference from baseline between groups at end point. of interest, in another long-term study assessing the efficacy of donepezil for up to years in patients with mild- to-moderate alzheimer’s disease, no significant differences were observed in mean neuropsychiatric pharmacotherapy volume , number , inventory changes between treated patients and those receiving placebo. however, there are concerns regarding the validity of these data, as the study was underpowered, had very high attrition rates ( % by the end of year ), and was designed to include multiple drug washout periods. results from a meta-analysis of randomized, p l a c e b o - c o n t ro l l e d t r i a l s i n v e s t i g a t i n g t h e functional and behavioral effects of several cholinesterase inhibitors in patients with mild-to- moderate alzheimer’s disease were recently published. six of the trials included in the overall meta-analysis used the neuropsychiatric inventory to measure neuropsychiatric outcomes: two galantamine trials ( and patients, trial durations and days), one donepezil trial ( patients, trial duration days), and three trials of a newer cholinesterase inhibitor, metrifonate ( , , and patients, trial durations , , and days). (metrifonate has now been removed from development due to toxicity issues.) for these six trials, summary meta-analysis showed a small but statistically significant difference of . points compared w i t h p l a c e b o ( % c o n f i d e n c e i n t e r v a l . – . ). as a result, the authors concluded t h a t f o r p a t i e n t s w i t h m i l d - t o - m o d e r a t e alzheimer’s disease who have neuropsychiatric symptoms, cholinesterase inhibitors should be considered as a first-line therapeutic option. moderate-to-severe alzheimer’s disease at present, donepezil is the only cholinesterase inhibitor approved by the fda for the treatment of severe alzheimer’s disease. the efficacy and safety of donepezil have been assessed in a randomized, placebo-controlled study of patients with moderate-to-severe alzheimer’s disease that used the neuropsychiatric inventory to assess behavioral symptoms (table ). in this trial, total neuropsychiatric inventory scores were improved from baseline by . points after months of treatment, whereas those in the placebo group worsened by point (treatment difference p= . ). significant improvements favoring donepezil were seen in the symptoms of apathy, depression/dysphoria, and anxiety. patients in nursing homes to our knowledge, donepezil is the only cholinesterase inhibitor to have been studied in prospective, placebo-controlled trials in patients in nursing homes that used the neuropsychiatric inventory or neuropsychiatric inventory–nh as table . efficacy of cholinesterase inhibitors and memantine on the behavioral symptoms of patients with alzheimer’s disease: results from randomized, placebo-controlled trials that used the neuropsychiatric inventory scale study maximum mean baseline npi score duration baseline dosage treatment placebo drug (mo) disease stage mmse score (mg/day) group group cholinesterase inhibitors donepezil c mild to moderate – . . galantamine mild to moderate – . . . donepezil moderate to severe – . . donepezil mild to severe; – . . nursing home study donepezil severe; nursing home study – . . memantine memantine mild to moderate – . . donepezil + moderate to severe – . . memantine memantine moderate to severe – . . mmse = mini-mental state examination; npi = neuropsychiatric inventory; sem = standard error of the mean; ns = not statistically significantly different. avalue shown represents mean change from baseline; sem values are given when available from the published study. bp value is for comparison of mean change from baseline for treatment and placebo groups. cthree months open-label treatment with donepezil, then randomization to receive either donepezil or placebo for months. baseline npi score shown is score at randomization (i.e., after mo of open-label donepezil). din favor of placebo. managing behavior in alzheimer’s disease beier an outcome measure (table ). , in the first study, patients in all stages of alzheimer’s disease were included (mmse scores of – ), and concomitant psychotropic drug use was high ( % and % in the donepezil and placebo g ro u p s , re s p e c t i v e l y ) . n e u ro p s y c h i a t r i c inventory–nh total scores were improved for both donepezil-treated patients and those who received placebo from weeks until study end point at months (table ). no significant difference was observed between treatment groups for total neuropsychiatric inventory scores. individual item analysis showed that d o n e p e z i l t re a t m e n t s i g n i f i c a n t l y re d u c e d agitation/aggression compared with placebo ( p = . ) . t h e s e c o n d , m o re re c e n t , t r i a l specifically assessed the efficacy of donepezil in patients with severe alzheimer’s disease (mmse scores of – ). as in the earlier nursing home study, concomitant psychotropic drug use was very common (> % of total study population). at study end point, total neuropsychiatric i n v e n t o r y s c o re s w e re i m p ro v e d f o r b o t h donepezil-treated and placebo-treated patients (table ). again, no significant difference was observed between the donepezil and placebo treatment groups for total neuropsychiatric inventory scores. although rivastigmine has not been studied in a prospective, placebo-controlled trial in nursing home patients, a -week open-label study e x a m i n e d b e h a v i o r a l s y m p t o m s u s i n g t h e neuropsychiatric inventory–nh scale as the primary outcome measure. , nursing home residents with an mmse score of – inclusive were enrolled; % had at least one behavioral s y m p t o m a t b a s e l i n e , a n d a l l w e re t a k i n g concomitant drugs for one or more comorbidities. after weeks of rivastigmine treatment, % of patients showed a % or greater reduction in neuropsychiatric inventory–nh total score, and significant improvements were seen in of the individual neuropsychiatric inventory–nh domains (p≤ . ). after weeks, % of patients showed a % or greater reduction in neuropsychiatric inventory–nh total score, and o f t h e i n d i v i d u a l n e u ro p s y c h i a t r i c i n v e n t o r y – n h d o m a i n s w e re s i g n i f i c a n t l y improved over baseline. however, it should be noted that due to the open-label design of this study, , caution must be used in drawing efficacy conclusions, especially since behavioral improvements were seen for both active drug and placebo in the donepezil nursing home studies. , the apparent lack of a significant treatment difference between cholinesterase inhibitors and placebo in the nursing home studies contrasts with the significant behavioral benefits over placebo in community-dwelling patients with m i l d - t o - m o d e r a t e o r m o d e r a t e - t o - s e v e re a l z h e i m e r ’s d i s e a s e ( ta b l e ) . s u g g e s t e d explanations for this lack of treatment effect i n c l u d e t h e h i g h r a t e o f c o n c o m i t a n t psychotropic drug use in the nursing home patients (approximately % to > %), which may account for the behavioral improvements seen in the placebo groups. indeed, in the study of donepezil for moderate-to-severe alzheimer’s disease, which showed significant benefits of donepezil over placebo for problem behaviors, only – % of the patients used psychotropic a g e n t s a t s o m e p o i n t d u r i n g t h e s t u d y. alternatively, it has been suggested that there is a n i n h e re n t d i ff e re n c e b e t w e e n s t u d y i n g alzheimer’s disease–related behavior in patients residing in different settings and, consequently, a differential sensitivity of the neuropsychiatric inventory in these settings. in a recent review, the authors noted that studies of cholinesterase inhibitors in nursing home patients have yielded mixed results and suggested that the efficacy measures for community-dwelling patients may not be appropriate for measuring outcomes in nursing home patients. the authors suggested t h a t o u t c o m e s s u c h a s d e c re a s e d h o s p i t a l a d m i s s i o n s , p re v e n t e d f a l l s , re d u c e d s t a ff turnover, and reduced use of pharmacologic and/or physical restraints may be more useful measures of efficacy in this population. table . (continued) mean ± sem change in npi scorea treatment placebo treatment group group p valueb difference - . ± . + . ± . . . - . ± . + . ± . < . . . ± . < . . - . + . . . - . ± . - . ± . ns . d - . ± . - . ± . ns . - . + . . . - . ± . + . ± . . . + . + . ns . pharmacotherapy volume , number , safety the adverse events reported most often for patients taking cholinesterase inhibitors are nausea, vomiting, and diarrhea. other less common adverse events include weight loss, insomnia, abnormal dreams, muscle cramps, bradycardia, syncope, and fatigue. clinical experience suggests that starting cholinesterase inhibitor treatment at a low dosage and titrating the dosage upward gradually, may decrease the frequency of adverse events. memantine memantine, an n-methyl-d-aspartate receptor antagonist, received fda approval for the treatment of moderate-to-severe alzheimer’s d i s e a s e i n . s t u d i e s o f m e m a n t i n e m o n o t h e r a p y h a v e s h o w n t h a t i t p ro v i d e s cognitive and functional benefits to patients in late-stage disease. the effect of memantine t re a t m e n t o n t h e b e h a v i o r a l s y m p t o m s o f alzheimer’s disease have also been assessed. in a study of memantine monotherapy for moderate-to-severe alzheimer’s disease, no statistically significant treatment difference was o b s e r v e d b e t w e e n p a t i e n t s t re a t e d w i t h memantine and those receiving placebo. both groups showed worsened behavioral symptoms c o m p a re d w i t h b a s e l i n e a f t e r m o n t h s o f treatment, although the worsening was markedly less pronounced with memantine (table ). in a -month study of memantine add-on treatment, patients with moderate-to-severe alzheimer’s disease receiving long-term donepezil therapy (mean . yrs) were randomly assigned to re c e i v e e i t h e r d o n e p e z i l p l u s p l a c e b o o r donepezil plus memantine. at study end point, total neuropsychiatric inventory scores remained at baseline severity in patients who received add- on memantine treatment, but increased from baseline in patients receiving donepezil alone (treatment difference p= . ; table ). in re c e n t p o s t h o c a n a l y s e s f ro m t h i s t r i a l , neuropsychiatric inventory domain scores for agitation/aggression, irritability/lability, and appetite or eating change were statistically significant in favor of memantine at end point (p≤ . ). although not conclusive, these results suggest that combined treatment with a cholinesterase inhibitor and memantine may provide additional benefits over each agent alone in terms of treating the behavioral symptoms of alzheimer’s disease. despite not being specifically approved for mild-to-moderate alzheimer’s disease by the fda, a trial of memantine for patients in these stages of the disease was performed. in this study, patients with mild-to-moderate a l z h e i m e r ’s d i s e a s e ( m m s e s c o re – inclusive) were randomized to memantine m o n o t h e r a p y o r p l a c e b o . a t w e e k s , a statistically significant difference was noted in total neuropsychiatric inventory score in favor of memantine (p= . ; table ). safety the adverse events reported most often for patients receiving memantine include dizziness, confusion, headache, and constipation. most reported adverse events were mild to moderate in severity. , other pharmacologic treatments pharmacologic therapy for the more severe behavioral symptoms of dementia, such as delusions and hallucinations, has traditionally i n c l u d e d t h e c o n v e n t i o n a l a n d a t y p i c a l antipsychotics. recent reviews of studies including these agents noted that comparative d a t a d e m o n s t r a t i n g t h e a d v a n t a g e s a n d disadvantages of antipsychotic drugs in dementia are generally lacking. , effectiveness of these agents is also difficult to assess given the robust placebo responses in these patients. adverse effects for conventional antipsychotics include neurologic, cardiovascular, anticholinergic, and weight gain effects. specific neurologic adverse events, such as tardive dyskinesia and other gait disturbances, can increase the risk of falls and hip fracture in this frail population. , a review of pharmacologic treatments for n e u ro p s y c h i a t r i c s y m p t o m s o f d e m e n t i a indicated that the atypical antipsychotics, o l a n z a p i n e a n d r i s p e r i d o n e , h a v e t h e b e s t evidence for efficacy, with minimal adverse effects at lower doses. however, most of the antipsychotic trials reviewed in that article studied efficacy in nursing home residents or hospitalized patients, and, when reported, baseline neuropsychiatric inventory–nh scores w e re m u c h h i g h e r t h a n t h o s e i n t h e cholinesterase inhibitor or memantine studies (mean treatment group score range . – . ). , this sugges t s t h a t t h e s e a g e n t s m a y b e particularly suited for more advanced behavioral problems associated with dementia. of interest, recent findings from the clinical antipsychotic trials of intervention effectiveness–alzheimer’s managing behavior in alzheimer’s disease beier disease (catie-ad) trial, specifically designed to a s s e s s t h e e ff e c t i v e n e s s o f a t y p i c a l antipsychotics in patients with alzheimer’s disease, showed that the benefits of these agents on behaviors such as psychosis, agitation, or aggression, were in most cases offset by adverse events. the authors concluded that physicians and patients and/or their caregivers need to fully consider the risk:benefit ratio with these agents in order to optimize patient care. in principle, the combination of a low-dose atypical anti- psychotic and either a cholinesterase inhibitor or memantine might be beneficial for the treatment o f b e h a v i o r a l s y m p t o m s i n p a t i e n t s w i t h alzheimer’s disease, but such combinations have not been systematically studied in placebo- controlled, prospective, double-blind, randomized trials. atypical antipsychotics have a more favorable adverse-effect profile than that of conventional agents, although there are conflicting reports of w h e t h e r t h e y h a v e f e w e r e x t r a p y r a m i d a l symptoms. , in the catie-ad trial, extra- pyramidal symptoms were more common among individuals receiving olanzapine ( %) and r i s p e r i d o n e ( % ) t h a n i n t h o s e re c e i v i n g quetiapine ( %) or placebo ( %). however, other adverse effects limit the utility of these drugs because some of the atypical drugs have the potential to exacerbate the cognitive and functional symptoms of alzheimer’s disease because of their anticholinergic properties. in a d d i t i o n , r i s p e r i d o n e , o l a n z a p i n e , a n d aripiprazole have been shown to result in cerebrovascular adverse events in dementia trials, although the clinical results supporting this association were not obtained from studies designed to prospectively assess the cerebro- vascular effects of these agents. results from a recent meta-analysis indicated no significant difference in the risk of ischemic stroke among patients with dementia treated with conventional or atypical antipsychotics. r e c e n t l y, t h e f d a d e t e rm i n e d t h a t t h e treatment of behavioral disorders in elderly patients with dementia with atypical (second generation) antipsychotic drugs is associated with increased mortality. because of these findings, the fda asked the manufacturers of these drugs to include a black-box warning in their labeling that describes this risk and notes that these drugs are not approved for this indication. boxed warnings are now included in the prescribing information for these atypical agents. the findings of the fda are supported b y d a t a f ro m a re c e n t m e t a - a n a l y s i s o f randomized controlled trials, which showed that atypical antipsychotic drugs may be associated w i t h i n c re a s e d m o rt a l i t y c o m p a re d w i t h placebo. of interest, results of another recent study indicate that conventional antipsychotic drugs are at least as likely as atypical agents to cause death in elderly patients with dementia, and that conventional antipsychotics should not be used to replace agents discontinued due to the fda warning. as depression is a common symptom for p a t i e n t s i n t h e e a r l y s t a g e s o f d e m e n t i a , antidepressant therapies have been used to treat patients with alzheimer’s disease. the older tricyclic antidepressants have proved to be of limited value for patients with dementia because of the anticholinergic adverse effects associated with their use. selective serotonin reuptake inhibitors have been shown to be better tolerated than tricyclic antidepressants, and they help alleviate the depressive symptoms of patients with dementia, although no clear benefits on neuropsychiatric symptoms have been reported in controlled studies. another common behavioral symptom of alzheimer’s disease is agitation. in patients with alzheimer’s disease, agitation may be reduced by treatment with mood-stabilizing agents. some studies of carbamazepine indicate significant benefits for agitation, whereas others studies are l e s s c o n c l u s i v e re g a rd i n g t h e e ff e c t s o f carbamazepine on behavioral symptoms. , , – likewise, studies of divalproex sodium have yielded mixed efficacy results. , , – benzodiazepines may be used for the treatment of agitation in some patients. in a double-blind, randomized, placebo-controlled trial investi- gating the efficacy of the atypical antipsychotic olanzapine and the benzodiazepine lorazepam in treating dementia-associated agitation, both drugs showed significant improvement over placebo on agitation scales at hours, which was maintained at hours for olanzapine only. sedation, adverse events, and laboratory analyses were not significantly different from those of the placebo group for either drug. generally, only a modest response to benzodiazepines is seen in patients with alzheimer’s disease, and other disadvantages include sedation, tolerance, risk of falls, and dependence. therefore, they may be most useful in managing occasional nonpsychotic agitation or anxiety, but they are not recom- m e n d e d f o r t h e l o n g - t e r m m a n a g e m e n t o f behavioral symptoms. , pharmacotherapy volume , number , discussion the behavioral symptoms of alzheimer’s disease tend to increase in prevalence and severity as the disease progresses and frequently precipitate nursing home placement. recognizing and treating behavioral symptoms early with n o n p h a r m a c o l o g i c a n d / o r p h a r m a c o l o g i c treatments can slow symptom progression. appropriate treatment of alzheimer’s disease can also reduce the distress to patients and caregivers and may delay placement of a patient in a residential care facility or nursing home. , prospective, randomized, placebo-controlled t r i a l s h a v e s h o w n t h a t t h e c h o l i n e s t e r a s e inhibitors, donepezil and galantamine, can provide behavioral benefits for patients with m i l d - t o - m o d e r a t e a l z h e i m e r ’s d i s e a s e . i n addition, donepezil treatment has been shown to improve behavioral symptoms in patients with m o d e r a t e - t o - s e v e re a l z h e i m e r ’s d i s e a s e . memantine treatment as an add-on to long-term donepezil therapy has also been shown to benefit patients with moderate-to-severe alzheimer’s d i s e a s e , a n d m e m a n t i n e m o n o t h e r a p y h a s provided behavioral benefits in patients with m i l d - t o - m o d e r a t e a l z h e i m e r ’s d i s e a s e . i n contrast, results from randomized, placebo- controlled studies of cholinesterase inhibitors in nursing home patients are less convincing, mainly due to the robust placebo response and the uncertain sensitivity of the neuropsychiatric inventory as a measure of behavioral problems in these patients. when considering the effects of cholinesterase inhibitors and memantine on behavior, the benefits, although significant, are often high- lighted as generally being small. , as shown in table , this is often the case. however, even when the reported changes in neuropsychiatric i n v e n t o r y s c o re s s e e m n u m e r i c a l l y l o w i n relation to the overall scale range, the percentage change from baseline score can occasionally show more promise. for example, in one study, among patients with mild-to-moderate alzheimer’s disease, those treated with donepezil showed a . - p o i n t re d u c t i o n i n n e u ro p s y c h i a t r i c inventory score, which seems negligible in relation to the overall scale range of – . nevertheless, when considered in relation to the change from baseline scores, the donepezil- treated patients showed a % improvement in behavioral symptoms, whereas placebo-treated patients showed a % worsening of behavioral symptoms over the same time period. when viewed in this manner, the possible benefits of these agents are somewhat clearer. in addition to cholinesterase inhibitors and memantine, other pharmacologic agents, such as antipsychotics, antidepressants, mood-stabilizing agents, and benzodiazepines, can assist with problem behaviors. indeed, many of these agents are effectively used to treat the behavioral symptoms of alzheimer’s disease, particularly in p a t i e n t s w i t h s e v e re b e h a v i o r a l p ro b l e m s . however, none of these agents is approved by the fda for the specific treatment of the behavioral symptoms of alzheimer’s disease. moreover, use of these agents may be limited by uncertain efficacy, poor safety profiles, and/or potential a n t i c h o l i n e rg i c e ff e c t s , a n d m a n y a re n o t recommended for long-term management of behavioral problems. conclusion nonpharmacologic strategies remain the cornerstone of the management of alzheimer’s disease–related behavioral symptoms. however, when pharmacologic intervention is deemed necessary for problem behaviors, it is important t h a t p h y s i c i a n s , p h a rm a c i s t s , a n d n u r s e s recognize the possible beneficial effects of cholinesterase inhibitors, either alone or with m e m a n t i n e a s a p p ro p r i a t e f o r t h e s t a g e o f disease, and consider these agents as a first-line option for early pharmacologic treatment of the behavioral symptoms of alzheimer’s disease. references . galasko d. an integrated approach to the management of alzheimer’s disease: assessing cognition, function and behaviour. eur j neurol ; (suppl ):s – . . hebert le, scherr pa, bienias jl, bennett da, evans da. alzheimer disease in the us population: prevalence estimates using the census. arch neurol ; : – . . evans da, funkenstein hh, albert ms, et al. prevalence of alzheimer’s disease in a community population of older persons: higher than previously reported. jama ; : 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psychiatry ; : – . . geldmacher ds, provenzano g, mcrae t, mastey v, leni jr. donepezil is associated with delayed nursing home placement in patients with alzheimer’s disease. j am geriatr soc ; : – . doi: . /j.bbmt. . . poster session ii the purpose of this poster is to describe how unc hospitals’ be- gan its patient and family support program and how this program has impacted patient outcomes and patient satisfaction. stem cell transplantation patient family caregivers: a pro- gram focused on ‘‘caring for the caregiver’’ adornetto-garcia, d.l., williams, l.a., jackson, a., norman, l., lederleitner, c., mir, m. md anderson cancer center, houston, tx. one of the most important aspects of stem cell transplantation (sct) is identifying a family caregiver to care for the patient during the transplant journey. at one of the largest transplant centers in the county, the focus is to develop a comprehensive sct caregiver program. the program is based on current caregiver literature and on the qualitative research of dr. loretta wiliams. the pro- gram is based on six themes identified in dr. williams’s research and includes commitment, expectation management, role negotia- tion, self care, new insight and role support. there are three components of the sct caregiver program. the first component is the development of a comprehensive caregiver manual. the manual will contain both education and resource in- formation focused specifically towards the family caregiver. the second component is to provide caregivers with expressive art ma- terials such as journals, photo albums and scrap books. researchers have suggested that psychological symptoms rather than physical symptoms are the most overwhelming to most caregivers and that – % suffer from these symptoms. the use of creative activities may promote feelings of well being, provide comfort, and lower anxiety. the third component is to conduct quarterly caregiver appreciation weeks. during one week of each quarter, caregivers are offered opportunities to participate in a variety of activities. the activities include massage, journaling, scrap booking and bingo. providing this recognition is our way to acknowledge the caregiver as an important person in the sct journey. in summary clinicians can provide support to family caregivers by providing them with education and expressive arts, and by acknowl- edging their unique contributions to the sct patients. the devel- opment of the sct caregiver program will provide the framework to meet the needs of the family caregiver throughout their sct journey. nursing care of the bone marrow transplant patient in sep- tic shock with acute respiratory distress syndrome mulholland, k. froedtert hospital, milwaukee, wi. purpose: provide a case study of a complex bone marrow trans- plant (bmt) patient in septic shock with acute respiratory distress syndrome (ards). to educate nurses about the pathophysiology of and nursing interventions for a patient in septic shock with ards. rationale: due to the immunocompromised nature of the bmt patient, sepsis and ards are more frequently seen in this population. the effects can be devastating and often result in multi-system organ failure and death. nurses can play a key role in patient outcomes by recognizing the signs and symptoms of sep- tic shock and ards. it is necessary for nurses to understand the cur- rent treatments and interventions to provide high quality patient care. history: the case study is based on a thirty-eight year old male diagnosed with hodgkin’s lymphoma who underwent autog- olous and allogenic bone marrow transplants. he was admitted to the bmt unit with worsening renal insufficiency. the night before he was scheduled to have a mahukar placed, he aspirated some water with his nighttime medications. throughout the night his oxygen requirements increased. while having the mahukar placed, his ox- ygen level dropped and he was intubated. interventions: the pa- tient required critical care interventions, including multiple vasopressors, frequent ventilator changes, and continuous renal re- placement therapy (crrt). he was medically paralyzed and re- quired advanced cardiac life support. implications: bmt nurses need a current knowledge base in the care of the septic and ards patient. nurses should be aware of the risk factors for sepsis and ards and be able to recognize the signs and symptoms of both conditions. it is important for nurses to be knowledgeable of the current treatment and interventions for septic shock and ards in order to take quick action in these emergency situations. successful integration of complementary therapies in a combined adult and pediatric bone marrow transplant unit mueller, k., farmer, a., talbert, g., shea, t. university of north carolina hospitals, chapel hill, nc. the university of north carolina hospitals’ bone marrow and stem cell transplant program was established in . since that time, hundreds of transplants have been performed. many changes have occurred: new regimens, new chemotherapies and other medications, and the addition of biotherapies. unfortunately, the side effects of pain and discomfort during treatment still exist. pain medications have been part of the transplant process since the beginning. morphine, hydromorphone, fentanyl, and others have helped smooth the rough road of transplant. antiemetics have been used to reduce the side effects of nausea and vomiting. recently, complementary therapies have further paved the way to a more easily tolerated transplant experience. at unc hospitals, the bone marrow and stem cell transplant program has incorporated massage therapy, relaxation and medita- tion exercises, pet therapy, aromatherapy, healing touch, singing bowls, and prayer labyrinths into its practice for those patients in- terested in combining complementary therapies with medication to decrease the intensity of pain with treatment. patients may have massages in their rooms. they may use a prayer labyrinth to become grounded and connect with their spiritual selves. they also have the opportunity to use singing bowls to focus energy. our recreational therapists guide patients into meditation exercises using guided imagery, biofeedback, diaphragmatic breathing, and relaxation tapes to calm fears and relieve discomfort. the purpose of this poster is to describe the complementary ther- apies utilized by unc’s bone marrow and stem cell transplant program and the ways in which patients undergoing transplants have benefited from these therapies. preventing falls for hematopoietic stem cell patients wood, j.m., schuldt, t.l., eilers, j. nebraska medical center, omaha, ne. in accordance with joint commission’s national patient safety fall prevention goal, we have focused on decreasing falls in our he- matopoietic stem cell (hsct) patients. the medications and side effects that accompany hsct place this population at high risk for falls. sustained low platelet counts following transplant place the patients at greater risk for life threatening injuries in the event of a fall. in attempt to decrease our fall rate, we reviewed incident reports and conducted post fall patient interviews. we identified the high risk group to be the alert and oriented patients in their ’s and ’s, most involving toileting issues. interviews determined the most frequent reasons for not calling for assistance were not ac- knowledging increased weakness and a desire to maintain personal dignity and independence with toileting. we initiated an extensive education program to help patients gain an understanding of their fall risk and the potential seriousness of related injuries. patient/fam- ily education begins pre-transplant, is followed up on by the 	stem cell transplantation patient family caregivers: a program focused on ‘‘caring for the caregiver’’ 	nursing care of the bone marrow transplant patient in septic shock with acute respiratory distress syndrome 	successful integration of complementary therapies in a combined adult and pediatric bone marrow transplant unit 	preventing falls for hematopoietic stem cell patients italian review of agricultural economics vol. , n. : - , firenze university press www.fupress.com/rearea italian review of agricultural economicsitalian review of agricultural economics issn - (print) | issn - (online) | doi: . /rea- citation: f. giarè, g. ricciardi, m. ascani ( ) la normative itali- ana sull’agricoltura sociale e il ruolo dell’impresa agricola. italian review of agricultural economics ( ): - . doi: . /rea- received: april , revised: july , accepted: july , copyright: © f. giarè, g. ric- ciardi, m. ascani. this is an open access, peer-reviewed article published by firenze university press (http:// www.fupress.com/rea) and distributed under the terms of the creative com- mons attribution license, which per- mits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. data availability statement: all rel- evant data are within the paper and its supporting information files. competing interests: the author(s) declare(s) no conflict of interest. la normative italiana sull’agricoltura sociale e il ruolo dell’impresa agricola francesca giarè, gabriella ricciardi, michela ascani crea - research centre for agricultural policies and bioeconomy, italy abstract. in italy, the regulatory framework on social farming has a high level of articulation at national and regional level and requires adequate analysis in order to understand the possible implications for the agriculture. the purpose of the article is to contribute to the understanding the possible interactions between farmers, local communities, public and private actors and recipients. the contribute, after a general analysis of the national and regional legislation, focuses on the figure of the sf opera- tor and on the modalities of registration with the regional register. the question arises is whether and to what extent the regulatory framework on sf changes the role of agri- culture itself with the system into which it operates, mainly about social aspects and relations with other local actors. parole chiave: agricoltura sociale, normativa, impresa agricola, multifunzionalità, valore sociale. jel codes: o , o , i , i , q . introduzione l’agricoltura sociale (as) può essere definita come quell’attività caratte- rizzata dall’uso delle risorse dell’agricoltura per la realizzazione di benefici di tipo sociale, sanitario o educativo ad un’ampia gamma di soggetti (dell’olio et al., ). in particolare, le risorse dell’azienda agricola vengono utilizzate per percorsi di inserimento socio-lavorativo, co-terapia, offerta di servizi per la popolazione e per persone con bisogni specifici di contesti locali determina- ti (di iacovo, ). non si tratta, quindi, di semplice lavoro presso un’azienda agricola, quanto piuttosto di percorsi e pratiche «che attraverso lo sviluppo di attività agricole o a queste connesse si propongono esplicitamente di generare benefici per fasce vulnerabili della popolazione» (carbone et al., ). in italia l’as si è sviluppata attraverso azioni locali ad opera di sogget- ti eterogenei a partire dalla seconda metà degli anni ’ del secolo scorso (giarè et al., ) ed è per tale motivo caratterizzata da una notevole dif- ferenziazione sul territorio nazionale sia per quanto riguarda gli attori coin- volti sia per quanto riguarda le attività realizzate. l’as si presenta come un insieme differenziato di attività perché risponde a una molteplicità di situa- zioni di difficoltà e a una pluralità di soggetti destinatari. diventa pertanto necessario il coinvolgimento di differenti attori pubblici e/o privati di volta francesca giarè, gabriella ricciardi, michela ascani in volta interessati ad operare nello specifico settore. in assenza di una regolamentazione specifica sull’as, inol- tre, per molti anni gli attori hanno utilizzato le norme disponibili nel campo sociale, sanitario e agricolo, dan- do luogo a protocolli, convenzioni, accordi di collabora- zione che hanno consentito lo sviluppo di progetti e ini- ziative di vario genere. È comunque possibile considerare l’as un unico ambito di intervento, in quanto risulta caratterizzata da una serie di elementi riscontrabili, anche se in misura variabile e con notevoli differenze, in tutte le esperien- ze, come la presenza di un’attività agricola produttiva e finalizzata alla vendita, la collaborazione tra più attori privati e pubblici (giarè et al., ; giarè, macrì ; di iacovo, ), la presenza di azioni volte all’inclusio- ne sociale e lavorativa, alla co-terapia e alla creazione di servizi per la popolazione, con una forte attenzione alla sostenibilità ambientale (ciaperoni, e ). le iniziative di as presenti in italia sono prevalentemente finalizzate all’inclusione sociale e lavorativa di persone svantaggiate, secondo un approccio di tipo inclusivo (di iacovo et al., ; di iacovo, o’connor, ; giarè et al., ), che differenzia l’esperienza italiana da quel- la sviluppata nei paesi del nord europa, principalmente orientata alla cura e all’assistenza, come nel caso dell’e- sperienza olandese del care farming (hassink et al., ; hassink et al., ; hassink et al., ; dell’olio et al., ) o in quello delle pratiche di care farm in germa- nia e francia, svolte da strutture accreditate dal sistema sanitario nazionale e caratterizzate da un’elevata preva- lenza della dimensione socio-sanitaria (moruzzo et al., ). a partire dal , anno in cui la regione friuli- venezia giulia ha previsto erogazioni di contributi a favore dei comuni per sostenere le attività rivolte a per- sone con forme di fragilità o di svantaggio psicofisico o sociale , le regioni e le province autonome hanno prov- veduto a regolare tale attività, a volte con norme speci- fiche, altre con articoli e riferimenti inseriti in norme riguardanti tutto il settore agricolo o specificamente le attività di diversificazione. in alcuni casi (liguria, vene- to, sardegna, ecc.), per definire la disciplina normativa, le regioni hanno anche attivato processi di animazio- ne e condivisione con gli attori dell’as, organizzando tavoli di confronto, seminari e workshop di approfondi- mento, ecc. tali processi hanno consentito di raccoglie- re le istanze provenienti dal mondo agricolo e da quel- lo socio-sanitario e di definire norme maggiormente rispondenti alle specificità locali. si è trattato di un’im- portante occasione di confronto tra operatori e ammini- l.r. / , «riordinamento normativo dell’anno per il settore delle attività economiche e produttive». stratori di settori differenti che hanno lavorato congiun- tamente, anche se con alcune difficoltà, alla definizione di un nuovo modello di multifunzionalità e welfare. in questo contesto, è intervenuta nel la l. / , «disposizioni in materia di agricoltura socia- le», approvata dal parlamento, dopo un articolato iter e numerose proposte presentate in senato e alla camera, nel tentativo di fornire una cornice comune agli inter- venti normativi regionali “allo scopo di facilitare l’ac- cesso adeguato e uniforme alle prestazioni essenziali da garantire alle persone, alle famiglie e alle comunità locali in tutto il territorio nazionale e in particolare nelle zone rurali o svantaggiate” (art. ). la legge, nell’intro- durre una qualificazione giuridica unitaria alle attività di welfare svolte in contesti rurali, ha inteso realizzare un coordinamento tra le esigenze pubbliche e i soggetti che operano nell’as (canfora, ); inserendosi nel pro- cesso di costruzione di «un nuovo welfare partecipativo» (canfora, ), la legge promuove l’as quale aspetto della multifunzionalità delle imprese agricole e preve- de quattro tipi di attività, volte all’inclusione sociale e lavorativa delle persone svantaggiate e all’offerta di ser- vizi alla popolazione, come si vedrà con maggiore det- taglio più avanti. successivamente alcune regioni hanno legiferato o modificato le proprie norme in maniera da adeguarle alla l. / , anche in mancanza di indica- zioni di dettaglio sulle modalità di riconoscimento degli operatori. il decreto attuativo previsto all’art. , comma , infatti, è stato pubblicato solo recentemente , dopo un lungo dibattito che ha visto coinvolti anche i diversi sog- getti presenti nell’osservatorio nazionale e la conferen- za stato regioni . nonostante l’approvazione del decreto attuativo, è possibile comunque affermare che la disciplina sia al momento ancora incompleta, sia perché il dettato nor- mativo “non può spiegare del tutto la complessità di una costruzione che è e sarà frutto (nel corso del tempo) del lavoro delle varie componenti nella filiera istituzionale, dell’intersecarsi di fonti nazionali e regionali (di vario grado e livello), europee e persino internazionali” (mac- cioni, ), sia perché alcuni elementi sono rimandati a specifi- che linee guida, sulle quali l’osservatorio nazionale sta d.m. / «definizione dei requisiti minimi e delle modali- tà relative alle attività di agricoltura sociale», pubblicato sulla gazzetta ufficiale n. del giugno . nominato dal mipaaf con decreto n. del / / . il decreto n. del / / disciplina le modalità di organizzazione e funzio- namento dell’osservatorio. intesa raggiunta in sede di conferenza permanente per i rapporti tra lo stato, le regioni e le province autonome di trento e di bolzano ai sensi dell’articolo , comma , del d.l. / , nel corso della seduta del dicembre . la normative italiana sull’agricoltura sociale e il ruolo dell’impresa agricola tuttora lavorando, che dovrebbero fornire alle istituzioni pubbliche criteri omogenei per il riconoscimento delle imprese e per il monitoraggio e la valutazione delle atti- vità di agricoltura sociale, indicazioni per la semplifica- zione delle procedure amministrative e per la definizio- ne di strumenti di assistenza tecnica, di formazione e di sostegno per le imprese, oltre a definire percorsi formati- vi per gli operatori, indicazioni sui modelli efficaci di as e su contratti tipo tra imprese e pubblica amministrazio- ne, come definito al comma dell’art. della l. / . tuttavia, sulla base dei testi approvati a livello nazio- nale, le regioni dovranno rivedere il proprio assetto nor- mativo in materia di as e provvedere all’istituzione o revisione degli albi o registri regionali degli operatori del settore. lo studio si focalizza sull’analisi della normati- va nazionale e regionale relativa all’as, con lo scopo di verificare le possibili interazioni tra l’imprenditore agricolo e altri soggetti dell’as, comunità locali, attori pubblici e privati del territorio e destinatari delle azio- ni, introdotte dal dettato normativo. l’obiettivo è infatti quello di rilevare le principali novità che riguardano il ruolo dell’agricoltura nello sviluppo territoriale in rife- rimento all’ampliamento della propria azione nella sfera del welfare. l’articolo, dopo un’analisi generale della nor- mativa nazionale e regionale (par. ), si concentra sulla figura dell’operatore di as (par. ) e sulle modalità di iscrizione ai registri nazionali (par. ), al momento isti- tuiti solo da regioni. in sintesi, la domanda che ci si pone è se e in che misura il quadro normativo relativo all’agricoltura sociale modifichi il ruolo dell’agricoltura stessa rispetto al sistema in cui essa opera, con partico- lare riguardo agli aspetti sociali e alle relazioni con gli altri attori del territorio. . materiali e metodi il lavoro ha un carattere esplorativo e adotta un approccio prevalentemente di tipo induttivo. gli stru- menti di ricerca impiegati sono stati, quindi, l’anali- si documentale e della letteratura. in particolare, oltre alla l. / e al d.m. / , sono stati presi in esame: le norme di riforma del terzo settore (d.lgs. / , d.lgs. / , d.lgs. / , ecc.), le leg- gi regionali e provinciali relative all’as o, in mancanza di queste, gli altri atti, anche di natura amministrativa, che disciplinano la materia a livello regionale (delibere di giunta regionale, decreti del presidente della regio- ne, decreti o determinazioni dirigenziali); i regolamenti regionali che definiscono i criteri per il riconoscimento degli operatori. il processo di analisi è stato articolato in tre fasi: a) in una prima fase è stata svolta un’analisi desk sui docu- menti legislativi al fine di comprendere le scelte opera- te a livello nazionale e regionale; b) si è poi proceduto a un’analisi di tipo comparativo, tesa ad evidenziare ele- menti di convergenza o divergenza tra le norme regiona- li e tra queste e il dettato nazionale; c) infine è stata rea- lizzata un’analisi dei risultati ottenuti nelle due fasi pre- cedenti alla luce della letteratura disponibile in materia. per l’analisi documentale è stato creato uno schema mediante il quale sono stati «interrogati» i documen- ti, secondo etichette (label) dedotti dalla letteratura e implementati mediante l’analisi del contenuto (losito, ; arosio, e ). questo procedimento, uti- lizzato di frequente nella ricerca sociale, permette infatti di condurre l’analisi secondo la modalità definita di tipo «inchiesta» (losito, ): il testo viene preso in esame con l’obiettivo di individuare gli aspetti prevalenti e di ricollocare gli stessi a una serie di categorie individuate a priori dal ricercatore. l’arco temporale preso in considerazione va dal , data del primo intervento normativo sull’as (l.p. / trento), al , anno in cui la regione piemon- te ha approvato la legge regionale / . il , anno dell’approvazione della l. / , rappresenta ovvia- mente un elemento importante di discriminazione per l’analisi della normativa regionale. . l’agricoltura sociale secondo la normativa nazionale e regionale la l. / inserisce l’agricoltura sociale nel qua- dro più generale della multifunzionalità delle imprese agricole, riconoscendone il valore sociale, sanitario, edu- cativo e di inserimento socio-lavorativo. la norma defi- nisce l’agricoltura sociale come l’insieme delle “attività esercitate dagli imprenditori agricoli di cui all’articolo del codice civile, in forma singola o associata, e dalle cooperative sociali di cui alla l. / , nei limiti fissati dal comma del presente articolo, dirette a realiz- zare” (art. ): a) inserimento socio-lavorativo di lavoratori con disa- bilità e di lavoratori svantaggiati, definiti ai sensi dell’articolo , numeri ) e ), del reg.(ue) / , di persone svantaggiate di cui all’articolo della l. / , e successive modificazioni, e di minori in età lavorativa inseriti in progetti di riabilitazione e sostegno sociale; b) prestazioni e attività sociali e di servizio per le comunità locali mediante l’utilizzazione delle risorse materiali e immateriali dell’agricoltura per promuo- francesca giarè, gabriella ricciardi, michela ascani vere, accompagnare e realizzare azioni volte allo svi- luppo di abilità e di capacità, di inclusione sociale e lavorativa, di ricreazione e di servizi utili per la vita quotidiana; c) prestazioni e servizi che affiancano e supportano le terapie mediche, psicologiche e riabilitative finalizza- te a migliorare le condizioni di salute e le funzioni sociali, emotive e cognitive dei soggetti interessati anche attraverso l’ausilio di animali allevati e la col- tivazione delle piante; d) progetti finalizzati all’educazione ambientale e ali- mentare, alla salvaguardia della biodiversità nonché alla diffusione della conoscenza del territorio attra- verso l’organizzazione di fattorie sociali e didattiche riconosciute a livello regionale, quali iniziative di accoglienza e soggiorno di bambini in età prescolare e di persone in difficoltà sociale, fisica e psichica. già dalla lettura della definizione e delle attività previste dalla legge risulta chiara la volontà da parte del legislatore “di coniugare le attività produttive con quel- le sociali, di avvicinare i soggetti coinvolti alle tematiche ambientali, allo sviluppo locale e territoriale, sostenendo al tempo stesso un modello di welfare partecipativo, la coesione sociale, superando la logica della divisione dei compiti” (maccioni, ). in questa direzione si colloca anche la riforma del terzo settore , che, nel ridiscipli- nare il settore no profit e l’impresa sociale, ha ampliato i settori sui quali possono operare i relativi enti, intro- ducendo l’agricoltura sociale nell’elenco unico delle «attività di interesse generale»; le cooperative sociali e i loro consorzi, che acquisiscono di diritto la qualifica di imprese sociali, possono contare su diverse novità intro- dotte dalla riforma, tra le quali la possibilità di poter finanziare le attività di interesse generale anche attra- verso la richiesta a terzi di lasciti, donazioni e contributi di natura non corrispettiva; tale intervento normativo, in linea con il proliferare, negli ultimi anni, di diverse «tecniche di organizzazione dell’iniziativa economica orientate al sociale» dimostra l’“attenzione crescente per le esigenze di solidarietà sociale anche nel settore agro alimentare” (leonardi, ). i due settori di interven- to, produttivo e sociale, sono stati da sempre separati e declinati a partire da esigenze e modalità molto differen- ti tra loro. tuttavia, entrambi si sono caratterizzati negli ultimi decenni per la tendenza ad assumere prevalente- mente un approccio imprenditoriale, elemento che vie- la riforma del terzo settore, in attuazione della delega per la riforma contenuta nella l. / , è stata attuata con il d.lgs. / , recante il codice del terzo settore. il quadro è completato dal d.lgs. / , recante la «revisione della disciplina in materia di impresa sociale, (a norma dell’articolo ), comma , lettera c) della l. / », integrato e corretto con d.lgs. / . ne ripreso dalla l. / nel momento in cui colloca l’inclusione sociale in un’ottica non assistenziale, ma di impresa e – allo stesso tempo – di sussidiarietà rispetto al sistema socio-sanitario nazionale. l’opportunità di coniugare l’attività produttiva con quella di inclusione sociale era presente già in diversi documenti di politica a livello europeo, come il tratta- to sul funzionamento dell’unione europea, che stabilisce per la politica agricola comune obiettivi di tipo econo- mico, ma anche sociale (art. ). nell’ambito dello svi- luppo rurale, inoltre, l’ue – già a partire dalla program- mazione - – ha individuato misure e risorse economiche indirizzate verso questa tipologia di inter- venti (giarè et al., ). i programmi di sviluppo rurale (psr) - in italia hanno dedicato all’agricoltura sociale interessanti opportunità, programmando inter- venti all’interno di varie misure (ascani, de vivo, ). un numero consistente di  regioni ha affidato alla  sot- tomisura  . ,  che finanzia la creazione e lo sviluppo di attività extra-agricole, il  ruolo di promuovere l’as, a testimonianza della valorizzazione in atto del ruolo mul- tifunzionale delle imprese agricole, alle quali si chiede di ampliare la gamma di servizi offerti al territorio offren- do  servizi di carattere sociale destinati alle popolazioni rurali o a specifiche categorie di persone. l’interven- to più innovativo in materia di as, tuttavia, è previsto all’interno della misura , dedicata alla cooperazione. la sottomisura . sostiene, infatti, la «diversificazione delle attività  agricole in attività riguardanti  l’assistenza sanitaria,  l’integrazione sociale,  l’agricoltura sostenuta dalla comunità e  l’educazione ambientale e alimentare» e si indirizza specificamente alla promozione e all’imple- mentazione di servizi sociali da parte di aggregazioni di soggetti. questi obiettivi vengono perseguiti stabilendo rapporti di cooperazione e creando reti tra soggetti pub- blici, privati e del terzo settore per la promozione di ser- vizi e pratiche di as rivolti non solo a fasce deboli della popolazione, ma anche alla popolazione rurale nel suo complesso. viene dato in sostanza all’attività agricola il ruolo di produrre benefici per i territori e perla colletti- vità, attraverso l’azione comune generabile dalle intera- zioni tra impresa agricola, comunità locali, attori pub- blici e privati, destinatari delle attività. gli interventi di policy programmati nei psr vanno a confermare quan- to riconosciuto ampiamente in letteratura circa il ruolo dell’as nel rispondere in modo innovativo a fabbisogni economici e sociali delle aree rurali e periurbane, com- binando in maniera armonica attori diversi e offrendo servizi sociali e sanitari indirizzati non solo a specifi- ci gruppi di soggetti, ma alla comunità intera (di iaco- vo, ; hassink et al., ; lanfranchi et al., ; garcía-llorente et al., ; guirado et al., ; borgi la normative italiana sull’agricoltura sociale e il ruolo dell’impresa agricola m. et al., ). in più della metà delle regioni italiane, inoltre, la sottomisura . , dedicata ai servizi di base a livello locale per la popolazione rurale, sostiene  investi- menti, da parte di soggetti pubblici, finalizzati all’offerta di servizi sociali di vario tipo rivolti a fasce deboli del- la popolazione odi servizi di base alle popolazioni rurali (ascani, de vivo, ). questa sottomisura, anche se non indirizzata all’impresa agricola, completa e poten- zia gli interventi a favore dello sviluppo di servizi per la comunità, contribuendo al consolidamento di una visione dell’as orientata verso i bisogni della società. per valutare l’ammontare delle risorse destinate dai psr ita- liani agli interventi che a vario titolo sostengono l’agri- coltura sociale, occorre attendere l’emanazione di tutti i relativi bandi da parte delle regioni. la politica di sviluppo rurale - , quindi, valorizza il ruolo dell’as come driver per lo sviluppo locale e la coesione sociale, e non solo come strumen- to per la diversificazione delle attività e l’integrazione del reddito dell’impresa. per completare il quadro di riferimento europeo, occorre citare anche il parere del comitato economico e sociale europeo (cese) del sul tema «agricoltura sociale: terapie verdi e politiche sociali e sanitarie». il testo, approvato dopo una fase di consultazione e raccolta di proposte e raccomandazioni, mette l’accento sulla grande varietà di forme che essa assume nei diversi contesti territoriali e sulla necessità di non limitarne, attraverso definizioni eccessivamente restrittive, le potenzialità di sviluppo. il cese sollecita, infine, la definizione di un quadro delle possibili attivi- tà e una serie di criteri di qualità che possano garanti- re all’as di beneficiare di un sostegno delle politiche dell’ue, individuando nella politica di sviluppo rurale - la sede privilegiata per realizzare le attività proposte, “avvalendosi in particolare della rete euro- pea per lo sviluppo rurale e delle diverse reti nazionali” (cese, ). ponendo l’as nell’ambito della multifunzionalità, il legislatore, tramite l’art. della l. / , in continui- tà con la tendenza della normativa europea e nazionale, contribuisce a ridefinire il ruolo dell’agricoltura. il decre- to legislativo / («norme per l’orientamento e modernizzazione del settore agricolo»), infatti, aveva già messo in evidenza il ruolo multifunzionale dell’impresa agricola, dando all’imprenditore agricolo la possibilità di diversificare la propria attività. l’obiettivo della norma era chiaramente quello di offrire maggiori opportunità di incrementare il reddito delle imprese agricole, ma cer- tamente anche quello di riconoscere funzioni e ruoli più ampi rispetto a quello della produzione agricola. più avanti (comma ), l’art. della l. esplicita come le attività connesse esercitate dall’imprenditore agricolo nell’ambito della legge stessa – tranne quelle per l’inserimento socio-lavorativo di lavoratori con disabilità o soggetti svantaggiati – «costituiscano attività connes- se ai sensi dell’art. del codice civile». l’inclusio- ne socio-lavorativa, infatti, non può essere considerata «attività», dato che per attività agricola o connessa ai sensi dell’art. c.c. “è necessario intendere un face- re che si estrinsechi in un’azione positiva e che dia luogo ad un qualche risultato apprezzabile all’esterno” (ricolli, ). il riconoscimento della connessione costituisce un ampliamento di quanto già disposto dalla legge finanzia- ria (articolo , comma , l. / ), che defi- nisce connesse ai sensi dell’art. , terzo comma del codice civile le attività di produzione e cessione di ener- gia da fonti rinnovabili agroforestali e fotovoltaiche, così come quelle volte alla produzione di carburanti da pro- duzioni vegetali e di prodotti chimici derivanti da pro- dotti agricoli provenienti prevalentemente dal fondo. c’è però da notare che il decreto legislativo / , che ha modificato il testo dell’art. c.c., non fa menzione del «sociale» nel richiamare la multi- funzionalità dell’impresa, inserendo nel testo soltanto alcune attività che non esauriscono le possibili declina- zioni della connessione. dunque, di fatto, la l. / amplia l’elenco delle attività connesse all’ambito sociale. alcune regioni (abruzzo, calabria, campania, emilia-romagna, friuli-venezia giulia, liguria, lom- bardia, marche, molise, sardegna, toscana, p.a. trento, umbria, veneto), nell’ambito della propria autonomia in materia di agricoltura, hanno collocato l’as nell’ambi- to della diversificazione, individuando in alcuni casi un legame specifico con l’agriturismo (es. lombardia per le fattorie sociali «erogative») o con la fattoria didatti- ca (es. friuli-venezia giulia), uniformando le procedu- re attuative a tali pratiche. il dibattito sulla necessità di porre condizioni di prevalenza dell’attività agrico- la su quella sociale è, tuttavia, ancora in corso. ricolli ( ) precisa che “il caso specifico della fornitura di servizi sociali da parte dell’impresa agricola, richiede, per potersi qualificare attività connessa ai sensi dell’art. c.c., che nello svolgimento della prestazione socia- le siano utilizzate prevalentemente le attrezzature e le risorse dell’azienda normalmente impiegate nell’attività agricola esercitata. la connessione, dunque, implica il rispetto di una duplice condizione: la prevalenza degli strumenti impiegati nell’attività agricola principale e la normalità, intesa in senso distante da quello del- l’«esercizio normale dell’agricoltura»”, così come pre- visto nel testo originario dell’art. , ad indicare un utilizzo costante e non saltuario delle risorse materiali e immateriali dell’azienda per lo svolgimento delle attività sia agricole che connesse. francesca giarè, gabriella ricciardi, michela ascani la legge sull’agricoltura sociale, quindi, non sem- bra porre alcun limite di prevalenza quantitativa delle attività sociali rispetto a quelle agricole. non sono tut- tavia chiare le implicazioni di tale ampliamento per le imprese agricole, ad esempio sotto il profilo fiscale. per quanto riguarda le attività dell’as, la legge nazionale interviene, rispetto alla normativa regionale precedente- mente approvata (tab. ), in modo restrittivo per un ver- so e di ampliamento per un altro. la tipologia di attività d), in particolare, costituisce un elemento non sempre considerato nelle leggi regionali, che hanno demandato almeno in parte tali attività alle discipline relative alle fattorie didattiche e all’educazione alimentare oppure a quelle della tutela della biodiversità. il punto d) della leg- ge nazionale, comunque, precisa che le attività elencate rientrano nell’as quando sono indirizzate a bambini in età prescolare e persone in difficoltà sociale, fisica e psi- chica. il d.m. / contribuisce a chiarire questo aspetto, affermando che con riguardo alle attività svol- te nelle fattorie didattiche si rimanda alle leggi regiona- li vigenti in materia e che “l’elenco dei soggetti di cui all’articolo , comma , della l. del che svol- gono attività di agricoltura sociale non sostituisce l’elen- co delle fattorie didattiche già predisposto dalle regioni secondo le specifiche leggi in materia” (art. , comma ). questa attenzione alla dimensione educativa risulta di particolare interesse; più in generale, “il modo in cui il tema dell’agricoltura sociale viene introdotto in ita- lia, sembra essere orientato a valorizzare la dimensione della multifunzionalità dell’azienda agricola nella logica del social investment” (genova e viganò, ), approc- cio proposto anche dalla commissione europea nel (social investment package for growth and social cohe- sion - com, ) e già presente all’interno dell’agen- da di lisbona, che propone l’investimento sociale come driver per la produttività e lo sviluppo. tale approccio, caldeggiato da tempo da esperti di diverse discipline, anche se con sfumature e approcci differenti, si basa sul- la necessità di un cambiamento di paradigma nelle poli- tiche di welfare, ormai insostenibili nella loro configu- razione attuale, che dovrebbero essere mosse non più da logiche emergenziali riparative, ma da istanze di preven- zione e promozione della salute (esping-andersen, ; hemerijck, e ). le norme regionali approvate prima e dopo l’entra- ta in vigore della l. / prevedono sempre attività di inserimento socio-lavorativo per persone appartenenti alle fasce deboli, anche con esplicito riferimento all’at- tuazione delle politiche attive di inserimento socio-lavo- rativo, confermando l’approccio inclusivo dell’as in ita- lia. sono presenti, inoltre, le attività di servizio indiriz- zate alle comunità e alle popolazioni locali, le iniziative educative, assistenziali e di accoglienza, anche in colla- borazione con autorità giudiziarie ed enti locali, attività che promuovono forme di benessere personale e rela- zionale e servizi che affiancano e supportano le terapie mediche, psicologiche e riabilitative, come pet therapy, ippoterapia, onoterapia, ortoterapia, e attività socio-sani- tarie. alcune delle attività previste differiscono solo per forma da quelle indicate nella l. / , anche se nella sostanza propongono le stesse attività; da questo punto di vista, dunque, per le regioni potrebbe essere semplice adeguare le proprie leggi regionali al dettato nazionale; altre attività previste dalle normative regionali, invece, non rientrano tra quelle elencate nella l. / , met- tendo in evidenza l’attuale discrepanza tra una pratica, quella dell’agricoltura sociale, nata spontaneamente e affermatasi per rispondere ad esigenze specifiche di varia natura, e la sua disciplina normativa, che nel tentativo di razionalizzarla e disciplinarla ha finito col restringerne la portata. con specifico riguardo alle leggi regionali emanate dopo l’entrata in vigore della l. / , si è riscontra- to che in diversi testi vengono indicati in modo chia- ro anche i destinatari delle attività di as e gli ambiti di intervento specifici, a volte esplicitando riferimenti inseriti in modo indiretto nella l. / e altre volte inserendo riferimenti non presenti nella legge naziona- le. un esempio del primo tipo è rappresentato dalla l.r. / della regione liguria che contempla espressa- mente anche le attività agricole sociali promosse dagli istituti penitenziari ai sensi degli articoli e -bis della l. / (norme sull’ordinamento penitenzia- rio e sull’esecuzione delle misure privative e limitative della libertà) e successive modificazioni. un esempio del secondo tipo è rappresentato, invece, dalla regione molise, l’unica a citare espressamente gli immigrati tra i destinatari delle attività nella l.r. / . un riferimen- to specifico ad «extracomunitari profughi», poi, risulta inserito nella legge di stabilità regionale / , della regione siciliana, che promuovendo, nell’art. , l’agri- coltura sociale quale esempio di multifunzionalità delle attività agricole, annoverava tra le sue attività l’ospitalità per le loro famiglie. come già chiarito, la normativa nazionale assegna all’osservatorio nazionale, istituito ai sensi dell’art. della l. / con decreto mipaaf / e presie- duto dal ministro delle politiche agricole, forestali e alimentari, il compito di elaborare linee guida per sup- portare le regioni nell’adeguamento delle proprie nor- me e nei percorsi per il riconoscimento degli operatori. l’osservatorio ha anche il compito di monitorare ed ela- borare le informazioni sul numero e sullo stato di svi- luppo delle attività di as nel territorio nazionale, al fine la normative italiana sull’agricoltura sociale e il ruolo dell’impresa agricola ta b. . a tt iv ità /i nt er ve nt i d i a s ne lle le gg i r eg io na li ap pr ov at e pr im a de ll’e nt ra ta in v ig or e de lla l. / . ta b. . s oc ia l f ar m in g ac tiv iti es in r eg io na l l aw s ap pr ov ed b ef or e th e en tr y in to fo rc e of th e la w / . a tt iv ità p er m ac ro vo ci lo m ba rd ia l.r . / , ar t. bi s, in tr od ot to co n l.r . / , a rt , c om m a , le tt . b tr en to l.p . / , ar t. v en et o l.r . / , ar t. fr iu li- v en ez ia g iu lia l.r . / , ar t. , m od ifi ca to co n l.r . / , ar t. li gu ri a l.r . / , ar t. em ili a- r om ag na l.r . / , ar t. to sc an a l.r . / , ar t. u m br ia l.r . / , ar t. , co m m a m ar ch e l.r . / , ar t. a br uz zo lr / , ar t. , le tt . b m ol is e l.r . / , ar t. , co m m a c am pa ni a l.r . / , ar t. , co m m a c al ab ri a l.r . / , ar t. sa rd eg na l.r . / , ar t. . a) i nc lu si on e so ci al e x x x x . b) i ns er im en to s oc io -l av or at iv o (s og ge tt i sv an ta gg ia ti, fa sc e de bo li, a r is ch io d i m ar gi na liz za zi on e, m in or i i n et à la vo ra tiv a, di sa bi li fis ic i, de te nu ti) x x x x x x x x x x . b. ) p ol iti ch e at tiv e di in se ri m en to s oc io - la vo ra tiv o (a tt ra ve rs o as su nz io ni , t ir oc in i, fo rm az io ne p ro fe ss io na le a zi en da le )     x   x   x     x x x     ) s er vi zi u til i p er la v ita q uo tid ia na : a tt iv ità ed uc at iv e e di da tt ic o- r ic re at iv e; a tt iv ità cu ltu ra li, fo rm at iv e, r ic re at iv e, s oc ia li, as si st en zi al i; in te gr az io ne s co la st ic a de gl i al un ni in d iffi co ltà d i c ui a lla l eg ge d el ; r ei ns er im en to e r ei nt eg ra zi on e so ci al e pe r l’i nf an zi a, m in or i, fa m ig lie , a du lti a nc he in c ol la bo ra zi on e co n au to ri tà g iu di zi ar ie e d en ti lo ca li, a nz ia ni , s og ge tt i c on d is ab ili tà , di pe nd en ti da a lc oo l o d a st up ef ac en ti, tr au m at iz za ti ps ic hi ci , e x de te nu ti x x x   x   x x x x x x x x ) p re st az io ni e s er vi zi c he a ffi an ca no e su pp or ta no le te ra pi e m ed ic he , p si co lo gi ch e e ri ab ili ta tiv e (p er co rs i a bi lit at iv i; fo rm e di be ne ss er e pe rs on al e e re la zi on al e, p et th er ap y, ip po te ra pi a, o no te ra pi a, o rt ot er ap ia , a tt iv ità so ci o- sa ni ta ri e) x x x   x     x x   x   x x . a) r io rg an iz za zi on e di r et i d i p ro ss im ità : ag ri -a si li, a gr i- ni di , s er vi zi in te gr at iv i d el la pr im a in fa nz ia , e du ca tr ic i f am ili ar i, ce nt ri p er l’i nf an zi a co n at tiv ità lu di ch e e di a gg re ga zi on e m ir at e al la s co pe rt a de l m on do r ur al e e de i ci cl i b io lo gi ci e p ro du tt iv i a gr ic ol i; ac co gl ie nz a e so gg io rn o di b am bi ni in e tà p re sc ol ar e x x x x . b) d iffi co ltà s oc ia le : a cc og lie nz a di ur na p er an zi an i; so ci al h ou si ng e c oh ou si ng     x                       fo nt e: e la bo ra zi on i c r ea p b. so ur ce : o w n el ab or at io n. francesca giarè, gabriella ricciardi, michela ascani ta b. . a tt iv ità /i nt er ve nt i d i a s ne lle le gg i r eg io na li ap pr ov at e do po l’e nt ra ta in v ig or e de lla l. / . ta b. . s oc ia l f ar m in g ac tiv iti es in r eg io na l l aw s ap pr ov ed a fte r th e en tr y in to fo rc e of th e la w / . c at eg or ie g en er al i ( l. / ) a tt iv ità pi em on te l.r . / , ar t. lo m ba rd ia l.r . / , ar t. b ol za no l.r . / , ar t. tr en to l.p . / , ar t. la zi o l.r . / , ar t. fr iu li- v en ez ia g iu lia l.r . / , ar t. pu gl ia l.r . / , ar t. b as ili ca ta l.r . / , ar t. . i nc lu si on e so ci o- la vo ra tiv a . i ns er im en to s oc io -l av or at iv o di la vo ra to ri co n di sa bi lit à, p er so ne s va nt ag gi at e, m in or i in e tà la vo ra tiv a in se ri ti in p ro ge tt i d i ri ab ili ta zi on e e so st eg no s oc ia le   x x x     x x . a) i ns er im en to s oc ia le d i m in or i e a du lti   x             . p re st az io ni e a tt iv ità s oc ia li e di s er vi zi o pe r le c om un ità lo ca li . p re st az io ni e a tt iv ità s oc ia li e di s er vi zi o (p er le c om un ità lo ca li)     x x     x x . a) s er vi zi e p re st az io ni e du ca tiv e, fo rm at iv e, s oc ia li, r ig en er at iv e e di ac co gl ie nz a; f or m e di b en es se re p er so na le e re la zi on al e   x             . p re st az io ni e s er vi zi c he a ffi an ca no e su pp or ta no le te ra pi e m ed ic he , p si co lo gi ch e e ri ab ili ta tiv e . p re st az io ni e s er vi zi c he a ffi an ca no e su pp or ta no le te ra pi e m ed ic he , p si co lo gi ch e e ri ab ili ta tiv e   x x x     x x . p ro ge tt i d i e du ca zi on e am bi en ta le e al im en ta re , s al va gu ar di a bi od iv er si tà , di ffu si on e co no sc en za d el te rr ito ri o at tr av er so o rg an iz za zi on e di fa tt or ie s oc ia li e di da tt ic he r ic on os ci ut e a liv el lo r eg io na le (i ni zi at iv e di a cc og lie nz a e so gg io rn o di ba m bi ni in e tà p re sc ol ar e e di p er so ne in di ffi co ltà s oc ia le , fi si ca e p si ch ic a) . p ro ge tt i fi na liz za ti al l’e du ca zi on e am bi en ta le e a lim en ta re , a lla s al va gu ar di a de lla b io di ve rs ità n on ch é al la d iff us io ne d el la co no sc en za d el te rr ito ri o     x       x x . a) s er vi zi s oc io -e du ca tiv i p er la p ri m a in fa nz ia o ffe rt i i n un p ar tic ol ar e co nt es to am bi en ta le       x         r in vi o al la le gg e n. / x       x x     fo nt e: e la bo ra zi on i c r ea p b. so ur ce : o w n el ab or at io n. la normative italiana sull’agricoltura sociale e il ruolo dell’impresa agricola di facilitare la diffusione delle buone pratiche, e di racco- gliere e valutare in modo coordinato le ricerche sull’ef- ficacia delle pratiche di as e sul loro inserimento nella rete dei servizi territoriali. adesso competono anche la proposta di iniziative per il coordinamento e la migliore integrazione dell’as nelle politiche di coesione e svilup- po rurale ed azioni di comunicazione e animazione ter- ritoriale volte a supportare iniziative delle regioni e degli enti locali. tra gli altri compiti, si annovera anche il coordinamento della propria attività con quella di orga- nismi analoghi istituiti, sempre in materia di as, presso le regioni e le province autonome di trento e di bolza- no; ad esso è assegnato, dunque, un compito importan- te in termini di indirizzo e orientamento, ma anche di verifica e valutazione. l’attività dell’osservatorio nazionale si è concentrata finora sull’analisi dei contenuti di quello che poi è stato licenziato come decreto attuativo / . nel dicem- bre , invece, è stata avviata l’attività per la predispo- sizione delle linee guida con un workshop organizzato nell’ambito delle attività della rete rurale nazionale volto ad approfondire gli aspetti relativi a: formazione, inseri- mento lavorativo e certificazione; riconoscimento, requisi- ti e armonizzazione delle leggi regionali; questioni fiscali e gius-lavoristiche in materia di as. le attività dell’osserva- torio hanno subito un’interruzione con i recenti cambi di governo e sono stati ripresi ultimamente con l’intento di predisporre in breve tempo le linee guida. osservatori con compiti in parte simili a quel- li dell’osservatorio nazionale sono stati previsti anche nella norma di regioni (abruzzo, basilicata, calabria, campania, friuli-venezia giulia, lombardia, molise, piemonte, puglia, sicilia, toscana, veneto), anche se al momento risultano nominati soltanto l’osservatorio della regione calabria (dgr / ), che si è riunito due vol- te nel corso del , e quello della regione puglia (dgr / ), che si è riunito una sola volta nei primi mesi del . gli osservatori potrebbero avere una funzione mol- to importante per la governance dell’as a livello regio- nale e garantire un elevato livello di qualità degli inter- venti sia per quanto riguarda gli aspetti sociali, sia per quelli economici e di sviluppo delle comunità locali. al momento, tuttavia, in mancanza della loro attivazione e dell’avvio delle attività, non è possibile esprimere consi- derazioni sul loro funzionamento e sulla loro efficacia. l’attenzione del legislatore sugli aspetti relativi alla qualità degli interventi di as risulta particolarmente importante nell’ottica di garantire: un alto livello delle prestazioni per i soggetti fragili coinvolti nei processi; un miglioramento delle performance delle aziende che ero- gano i diversi servizi; lo sviluppo di comunità più coe- se. per quanto riguarda il primo punto, la norma sembra orientare l’intervento verso processi di empowerment e di giustizia sociale. tenendo conto dell’approccio inclu- sivo dell’as in italia, sarebbe auspicabile anche un’atten- zione a forme innovative di lettura dei bisogni sociali e di soluzioni diversificate in base ai contesti e alle persone coinvolte, orientate verso lo sviluppo di capability (sen, ). tuttavia, la mancanza di indirizzi orientati da criteri di qualità e modalità di verifica degli interventi e valutazione degli effetti sulle diverse dimensioni dell’as, al momento, lascia spazio anche a interpretazioni e logi- che differenti del «senso» dell’as stessa, più legate al wel- fare tradizionale. l’attenzione agli aspetti relativi alla qualità degli inter venti emerge anche da l contenuto del d.m. / , che detta alcuni criteri per lo svolgimento delle tipologie di attività definite dalla l. . di parti- colare interesse appare il carattere di regolarità e continu- ità richiesto per le attività di as nel d.m. (art. , comma ), qualità riferite anche alle attività con carattere stagio- nale, con l’obiettivo di promuovere azioni non episodiche di as nell’interesse soprattutto dei destinatari delle stes- se, ma anche delle realtà promotrici chiamate ad investire risorse umane, economiche e strutturali nella loro realiz- zazione. ciascuna regione provvederà, secondo il decre- to, “a fissare i termini temporali per garantire la continu- ità delle attività di agricoltura sociale”. anche nei successivi articoli la regolarità e la conti- nuità delle attività vengono richiamate, seppure con sfu- mature differenti: • l’art. (requisiti minimi e modalità dell’attività di inserimento socio-lavorativo) stabilisce che le atti- vità vengano svolte attraverso “percorsi stabili di inclusione socio-lavorativa dei soggetti mediante l’u- tilizzo delle tipologie contrattuali riconosciute dalla normativa vigente”; • l’art. (requisiti minimi e modalità per le presta- zioni e attività sociali e di servizio per le comunità locali) che vengano svolte “per una durata tempo- rale minima stabilita da ciascuna amministrazione regionale”; • l’art. (requisiti minimi e modalità per le presta- zioni e servizi che affiancano e supportano le tera- pie mediche, psicologiche e riabilitative) rimanda la definizione di una durata temporale minima a cia- scuna amministrazione regionale. un altro evidente segnale verso la promozione di interventi di qualità è dato dall’accento posto sulla colla- borazione con gli enti pubblici del sistema socio-sanita- rio e con i soggetti del terzo settore nell’intento di inte- grare le politiche agricole con quelle sociosanitarie, con particolare riferimento ai piani di zona e ai piani sanita- francesca giarè, gabriella ricciardi, michela ascani ri regionali (art. ); di educazione ambientale e alimenta- re e di salvaguardia della biodiversità (art. ); formative e del lavoro, ad esempio per quanto riguarda la certifica- zione delle competenze acquisite, secondo quanto previ- sto dalle linee guida in materia di tirocini formativi e di orientamento, di cui all’accordo sancito in conferenza stato regioni il maggio (art. ). inoltre, nei diversi articoli dedicati ai requisiti mini- mi per la realizzazione delle attività, si fa esplicito riferi- mento all’opportunità (art. ) o necessità (art. ) di avere la presenza di figure professionali preposte all’erogazione dei servizi tale da consentire il regolare svolgimento del- le attività. di nuovo, quindi, il dettato normativo sembra spingere verso l’offerta di servizi altamente qualificati in grado di garantire efficacia dell’intervento e sicurezza per i destinatari. . l’operatore di as secondo la normativa nazionale e regionale il dibattito sulle caratteristiche soggettive dell’o- peratore di as ha coinvolto per lungo tempo e tuttora coinvolge addetti, esperti e stakeholder. la legge nazio- nale, all’art. , individua negli imprenditori agricoli di cui all’articolo del codice civile, in forma singo- la o associata, e nelle cooperative sociali di cui alla l. / , gli operatori dell’as. tuttavia, la norma fissa un limite alla partecipazione delle cooperative socia- li: il loro fatturato derivante dall’esercizio delle attività agricole svolte deve essere prevalente o almeno superio- re al % di quello complessivo; in quest’ultimo caso, le cooperative sociali saranno considerate operatori dell’a- gricoltura sociale “in misura corrispondente al fattura- to agricolo” (art. , comma ). la norma, tuttavia, non esplicita le modalità di calcolo della percentuale di fat- turato derivante da attività agricola rispetto al totale; questione non affrontata neanche nel d.m. / , che rimanda il problema alle regioni. il tema è tuttora oggetto di discussione; le linee guida che l’osservatorio nazionale sta redigendo dovrebbero fornire indicazioni per uniformare il comportamento delle regioni. per quanto riguarda le cooperative sociali occorre precisare che quelle di tipo b possono iscriversi nel- le cooperative sociali,ai sensi dell’art. della l. / recante la «disciplina delle cooperative sociali», hanno lo “scopo di perseguire l’interesse generale della comunità alla promozione umana e all’integra- zione sociale dei cittadini” e si distinguono in cooperative sociali di tipo «a», ossia che gestiscono servizi socio-sanitari ed educativi , incluse le attività di cui all’art. , comma , lett. a), b), c), d), l), e p) del d.lgs. / , e di tipo «b», ossia che svolgono attività diverse - agricole, indu- striali, commerciali o di servizi - finalizzate all’inserimento lavorativo di persone svantaggiate. la sezione speciale imprese agricole del registro delle imprese e, in tal caso, essere dotate di fascicolo azien- dale e accedere agli strumenti di sostegno previsti dalla politica agricola come qualsiasi impresa agricola, purché in possesso dei requisiti richiesti dalle misure adottate dalle amministrazioni regionali. diversa è la posizione delle cooperative sociali di tipo a, che co-gestiscono i servizi socio-sanitari in attuazione delle norme nazio- nali e regionali, delle fondazioni e delle associazioni. a questo proposito, maccioni ( ) precisa che “occorre distinguere l’orizzonte (chiamiamolo così) definito nella l. / da queste altre realtà, non potendosi confon- dere il progetto di agricoltura sociale in discorso con un servizio pubblico”. la motivazione che ha spinto il legi- slatore a intervenire, infatti, è quella della promozione della multifunzionalità dell’agricoltura, attività produt- tiva che si basa sulla figura dell’imprenditore agricolo, chiamato a svolgere funzioni e ruoli più ampi rispetto al passato, anche se l’art. della stessa l. / specifi- ca che l’intervento normativo è finalizzato a “facilitare l’accesso adeguato e uniforme alle prestazioni essenziali da garantire alle persone, alle famiglie e alle comunità locali in tutto il territorio nazionale e in particolare nelle zone rurali o svantaggiate”. nel dettato nazionale, dunque, sono presenti “da un lato, figure giuridiche senza scopo di lucro e con fina- lità sociali e, dall’altro, soggetti economici  – le imprese agricole  – che orientano la propria attività verso l’utilità sociale” (prete, ) e che oggi rientrano a pieno titolo tra i soggetti che possono fornire servizi di utilità socia- le per la collettività (canfora, ). questo approccio all’agricoltura richiede ai diversi attori competenze non solo tecniche, ma anche trans-disciplinari e relazionali, oltre che una crescente responsabilizzazione verso l’am- biente e la società. l’intervento della l. / ha operato, nei fatti, una restrizione della platea dei soggetti titolati a svolgere attività di as sia rispetto ad alcune delle norme regio- nali precedentemente approvate (tab. ), sia rispetto alle esperienze realizzate nei differenti contesti locali. per quanto riguarda il primo aspetto, le regioni si erano comportate in maniera differente tra loro, anche tenendo conto, almeno alcune di esse, delle specificità regionali dell’as. in tutti i casi, le leggi regionali annoverano tra i soggetti che possono svolgere as le imprese agricole di cui all’articolo del codice civile, prevedendo a vol- te che siano affiancati da altri soggetti riconosciuti dalle norme del settore socio-sanitario quali attori del sistema, spesso già coinvolti nelle attività di as operanti sul ter- ritorio. la regione campania, ad esempio, prevede che possano svolgere l’attività anche i co-gestori dei progetti terapeutico riabilitativi individuali (ptri), sostenuti con la normative italiana sull’agricoltura sociale e il ruolo dell’impresa agricola budget di salute, ai sensi dell’articolo della l.r. / , norma che recepisce la l. / (legge quadro per la realizzazione del sistema integrato di interventi e servizi sociali). la legge quadro / , tra l’altro, nel confermare il ruolo centrale delle cooperative sociali “nella promo- zione dei diritti di solidarietà e nell’erogazione delle pre- stazioni attraverso le quali tali diritti di concretizzano”, ha ampliato il ruolo dei soggetti appartenenti al privato sociale; affiancando alle attività di “promozione e gestio- ne delle attività di interesse generale”, che la l. / assegnava alle cooperative sociali, anche quelle di “pro- gettazione” e “realizzazione concertata degli interven- ti” (art. , comma ), la legge quadro si è spinta fino ad attribuire loro un ruolo attivo nella programmazione del sistema integrato (art. , comma ) (perino, ). un ruolo attivo nella co-progettazione dei servizi con «fina- lità civiche, solidaristiche e di utilità sociale» è assegna- to, quindi, ad entrambe le categorie che, ai sensi della l. / , operano a pieno titolo nell’ambito dell’as. in alcune leggi regionali (liguria, marche), invece, sono titolati a svolgere le attività di as solo gli imprendito- ri agricoli – anche in associazione con altri attori – e la norma nazionale ha, al contrario, ampliato la platea dei possibili soggetti. la sardegna (l.r. / ) introduce, infine, anche gli imprenditori ittici e gli acquacoltori tra gli operatori dell’as. . le modalitÀ di iscrizione ai registri regionali in italia, solo nove regioni hanno istituito ad oggi (marzo ) un registro regionale delle fattorie socia- li, denominato a volte anche albo o elenco (tab. ). il numero ufficiale degli operatori iscritti è pari a , in graduale aumento rispetto agli anni precedenti: + , % rispetto ai dati di settembre e + % rispetto al (crea, annuario ). le regioni con il maggior numero di operatori sono le marche ( ), il friuli-vene- zia giulia ( ), seguite da veneto ( ) e lombardia ( ), che distingue le fattorie sociali in «inclusive» ed «eroga- tive», in funzione della partecipazione al processo pro- duttivo dei soggetti deboli, fruitori o beneficiari dei ser- vizi forniti. la gestione dei registri è affidata generalmente ai dipartimenti regionali dell’agricoltura, e in alcuni casi anche ad agenzie regionali per lo sviluppo rurale (ersa in friuli-venezia giulia, laore in sardegna) o alla dire- zione competente in materia di politiche sociali (abruz- zo). i registri in alcuni casi risultano articolati in sezioni tematiche (marche, veneto) che riflettono le categorie di attività in cui l’as è articolata a livello regionale, o anche in sezioni provinciali (calabria). in sardegna, invece, l’e- lenco delle fattorie sociali rappresenta una delle sezioni in cui è articolato l’albo regionale della multifunziona- tab. . soggetti che possono svolgere as nelle l.r. approvate prima dell’entrata in vigore della l. / . tab. . actors who can perform social farming in the regional law approved before the entry into force of law / . regione soggetti che possono svolgere as liguria (l.r. / ) aziende agricole, condotte dagli imprenditori agricoli di cui all’articolo del codice civile veneto (l.r. / ) imprenditori agricoli di cui all’articolo del codice civile e successive modificazioni, cooperative e imprese sociali nonché da altri soggetti pubblici o privati, che coniugano l’utilizzo delle risorse dell’agricoltura con le attività sociali toscana (l.r. / ) imprenditori agricoli di cui all’articolo del codice civile e/o dai soggetti di cui all’articolo , comma , della l.r. / umbria (l.r. / ) imprenditori agricoli di cui all’articolo del codice civile, imprese sociali, come definite dall’articolo del d.l. / (disciplina dell’impresa sociale, a norma della l. / ), e i soggetti di cui all’articolo , comma , della l. / , qualora siano imprenditori agricoli e svolgano attività agricole ai sensi dell’articolo del codice civile marche (l.r. / ) imprese agricole e dai soggetti iscritti all’albo regionale delle cooperative sociali di cui all’articolo della l.r. / , qualora svolgano le attività di cui all’articolo abruzzo (l.r. / ) imprenditori agricoli di cui all’articolo del codice civile o dai soggetti di cui all’articolo , comma , della l. / (legge quadro per la realizzazione del sistema integrato di interventi e servizi sociali) molise (l.r. / ) imprenditori agricoli ai sensi all’articolo del codice civile o dai soggetti di cui all’articolo , comma , della l. / e normative regionali vigenti campania (l.r. / ) imprese costituite ai sensi del d.l. / (disciplina dell’impresa sociale) che operano nei settori di utilità sociale indicati nell’articolo , comma , alle lettere a), c), e), f ), g) del medesimo decreto; imprese agricole di cui all’articolo ; cogestori dei progetti terapeutico riabilitativi individuali (ptri), sostenuti con budget di salute, ai sensi dell’articolo della l.r. / sardegna (l.r. / ) imprenditori agricoli, imprenditori ittici e acquacoltori francesca giarè, gabriella ricciardi, michela ascani lità delle imprese agricole e ittiche; le altre sezioni sono dedicate, infatti, ad agriturismo, ittiturismo, pescaturi- smo e fattorie didattiche. nel regolamentare le modalità di iscrizione nei regi- stri (albi o elenchi) regionali, sono stati definiti, con diversi livelli di dettaglio, i requisiti di natura soggettiva e oggettiva necessari per ottenere, e mantenere, l’iscri- zione. con riguardo ai requisiti di natura soggettiva, nei documenti relativi al riconoscimento della qualifica di fattoria sociale, tra i soggetti che possono chiedere l’i- scrizione al registro vengono indicati innanzitutto gli imprenditori agricoli, come definiti dall’articolo del codice civile. alcune regioni riconoscono tale qua- lifica anche alle fattorie didattiche che estendono i loro servizi alle fasce deboli di popolazione(friuli-venezia giulia) oppure ad imprese agrituristiche iscritte nel rela- tivo albo, qualora si tratti di fattorie sociali «erogative» (lombardia) ; le attestazioni aziendali inerenti al rico- le regioni hanno reso noti i requisiti e le modalità per il riconosci- mento degli operatori in documenti di tipo diverso: linee guide, regola- menti, circolari, ecc. secondo l’art. bis della l.r. / , le fattorie sociali inclusive sono imprese agricole che considerano “il soggetto debole quale elemento del processo produttivo agricolo”, rientrano in questa categoria le realtà che promuovono l’inserimento socio-lavorativo di soggetti in difficoltà “attraverso assunzioni, tirocini, formazione professionale aziendale”. lo noscimento di azienda agrituristica, fattoria didattica o azienda biologica nel caso della liguria sono, invece, considerati elementi di valutazione indiretta del requisito soggettivo di imprenditore agricolo (tab. ). in alcuni casi (campania, friuli-venezia giulia, liguria, marche, veneto) è previsto che la domanda di iscrizione possa essere presentata anche da enti e impre- se sociali, co-gestori dei progetti terapeutico riabilita- tivi individuali (ptri) , regolarmente iscritti all’albo, in altri invece è considerata obbligatoria la presenza di una o più figure professionali, quali “medico psichiatra, laureato in psicologia, operatore specializzato in terapie con animali, educatore professionale, operatore esper- to nella riabilitazione psichiatrica e/o nell’inclusione sociale” (abruzzo). in casi isolati (campania, veneto) si fa espresso riferimento, infine, alle imprese sociali che abbiano previsto, nell’atto costitutivo o statuto, lo svolgi- mento di attività di inserimento socio-lavorativo di per- sone deboli e l’esercizio di attività agricole. alle imprese agricole spesso sono richiesti espres- samente l’apertura del fascicolo aziendale sul sistema informativo agricolo nazionale (sian), l’iscrizione alla camera di commercio, nella sezione speciale imprese agricole del registro delle imprese, e alla gestione pre- videnziale (lombardia, sardegna). in casi isolati, invece, l’esercizio delle attività agricole, indicato più volte come requisito specifico, viene legato a volte a requisiti di carattere temporale (conduzione da almeno un biennio dell’impresa agricola regolarmente iscritta alla cciaa), altre all’adesione al metodo di produzione biologica all’adesione a regimi di qualità. soltanto la regione friuli-venezia giulia annove- ra espressamente tra i requisiti necessari per ottenere la qualifica di fattoria sociale anche la stipula di un “con- tratto di assicurazione di responsabilità civile verso ter- zi a copertura dei rischi connessi all’attività svolta” (dpr / , art. , comma ). completa il quadro dei requisiti soggettivi l’impe- gno a frequentare (calabria) o, più spesso, l’av venuta partecipazione dell’imprenditore o del referente del- le attività di as (coadiuvante familiare, socio, dipen- dente) a un corso di formazione organizzato da enti stesso articolo definisce fattorie sociali erogative le imprese agricole che considerano “il soggetto debole fruitore/beneficiario di servizi forniti dalla fattoria stessa”; rientrano in questa categoria le realtà che offrono servizi di varia natura (sociali, riabilitativi, educativi, ricreativi, ecc.) a diverse categorie di utenza in difficoltà, promuovendo in generale il benessere delle persone svantaggiate e, al tempo stesso, fornendo oppor- tunità di integrazione sociale. i ptri sono una modalità di erogazione delle prestazioni sociosani- tarie che trova fondamento nella l. / “legge quadro per la rea- lizzazione del sistema integrato di interventi e servizi sociali”. pur in assenza di una legge nazionale che li disciplini, i ptri sono normati a livello regionale sia con leggi che con altri atti di natura amministrativa. tab. . operatori di agricoltura sociale iscritti nei registri regionali. tab. . social farming operators registered in the regional registries. regioni numero di operatori iscritti lombardia* liguria** veneto friuli-venezia giulia marche abruzzo campania calabria sardegna totale (*) le attività della regione lombardia sono distinte in «inclusive» ( ), «erogative» ( ) e miste ( ). (**) gli operatori iscritti nel registro della regione liguria riportano una data di iscrizione compresa tra il / / e il / / ; di queste solo sono attive. fonte: nostre elaborazioni. (*) the activities of lombardy region are divided into “inclusive” ( ), “disbursing” ( ) and mixed ( ). (**) the operators of liguria region have been registered between / / and / / ; of these only are active. source: own elaboration. la normative italiana sull’agricoltura sociale e il ruolo dell’impresa agricola ta b. . r eg is tr i r eg io na li: r eq ui si ti so gg et tiv i r ic hi es ti pe r l’i sc ri zi on e. ta b. . r eg io na l r eg is te rs :su bj ec tiv e re qu ir em en ts fo r re gi st ra tio n. r eg io ne im pr es a ag ri co la c on du zi on e de ll’ im pr es a ag ri co la im pr es a so ci al e c og es to ri de i p t r i, so st en ut i c on bu dg et d i sa lu te fi gu re pr of es si on al i sp ec ifi ch e po ss es so d i q ua lifi ca at tin en te a lle a tt iv ità d a sv ol ge re ia p o co lti va to re di re tt o r eq ui si ti di cu i a ll’ ar t. c .c . fa sc ic ol o az ie nd al e si a n is cr iz io ne al la c c ia a is cr iz io ne al l’a lb o de lle fa tt or ie di da tt ic he o im pr es e ag ri tu ri st ic he es er ci zi o di u na o pi ù at tiv ità ag ri co le da a lm en o an ni se co nd o cr ite ri d i so st en ib ili tà am bi en ta le c or si d i fo rm az io ne q ua lifi ca d i op er at or e ag ri so ci al e a br uz zo x x       x         x     c al ab ri a x x x x x c am pa ni a x x x x x fr iu li- v en ez ia g iu lia x x x x li gu ri a x x x x x lo m ba rd ia x x x x x m ar ch e x x x x x sa rd eg na x x x x x x v en et o   x       x     x x   x   fo nt e: e la bo ra zi on i c r ea p b. so ur ce : o w n el ab or at io n. francesca giarè, gabriella ricciardi, michela ascani pubblici o enti di formazione accreditati e approvati dalle regioni (dipartimenti regionali competenti per materia o agenzie regionali per lo sviluppo rurale). i corsi di formazione, la cui durata varia dalle alle ore in funzione della regione di riferimento, possono prevedere, oltre a lezioni teorico-pratiche, anche lavo- ri di gruppo, esercitazioni di laboratorio, e-learning, project work, visite di studio o stage. i corsi, organiz- zati spesso in moduli, hanno contenuti che variano da regione a regione e possono riguardare, oltre che nor- me per la sicurezza dell’azienda agricola ed elementi di primo soccorso, anche caratteristiche dell’agricoltura sociale, legislazione di riferimento, aspetti amministra- tivi, contabili e fiscali, strumenti di finanziamento e approfondimenti tematici relativi alle singole tipologie di attività in cui si articola l’as. i requisiti di natura oggettiva sono classificabili in requisiti relativi alla struttura aziendale, requisiti di natura amministrativa e requisiti attinenti allo svolgi- mento delle attività aziendali. quasi tutte le regioni prevedono che le strutture aziendali, ivi compresi i locali adibiti a soggiorno e per- nottamento e gli immobili destinati alle attività sociali, che mantengono comunque la destinazione ad uso agri- colo, debbano essere conformi ai requisiti strutturali, igienico-sanitari, di sicurezza,ambientali e urbanistici previsti dalla legge e dai regolamenti edilizi comunali. È richiesta la piena disponibilità d’uso, in base ad un tito- lo legittimo di possesso o di detenzione delle strutture e delle aree da destinare allo svolgimento delle attività di as; in caso di beni confiscati alle mafie, è richiesta comunque la disponibilità all’uso del bene. tra i requi- siti principali si annovera anche la dotazione di strutture e attrezzature (es. ambienti coperti attrezzati per l’acco- glienza dei gruppi) adeguate allo svolgimento delle atti- vità di as esercitate o che si intendono avviare. con riguardo alle strutture aziendali è richiesto, in alcuni casi, che l’accesso agli immobili e alle aree inte- ressate sia «sicuro e libero da pericoli» anche per persone con disabilità psico-motorie, e che siano segnalate e deli- mitate aree e attrezzature a rischio. È considerato requi- sito necessario, in un paio di regioni (abruzzo, friuli- venezia giulia), anche la presenza di materiale di primo soccorso. il progetto di as può essere realizzato autonoma- mente (lombardia) o stipulando un accordo, conven- zione o protocollo di intesa con enti pubblici, coopera- tive sociali, associazioni di volontariato ed enti no pro- fit (calabria, campania, liguria, lombardia, marche). in casi isolati vengono richiesti anche i nulla osta e/o le autorizzazioni necessarie allo svolgimento delle attivi- tà esercitate e/o da porre in essere o anche la stipula di un’assicurazione per responsabilità civile a copertura dei rischi connessi all’attività svolta. tra i requisiti principali, invece, si annovera l’esi- stenza di un rapporto di connessione e complementarietà delle attività sociali con quella agricola, che deve restare prevalente. la connessione si realizza “quando l’azienda agricola è idonea allo svolgimento delle attività sociali in relazione all’estensione aziendale, alle dotazioni strut- turali, agli spazi disponibili, alle dimensioni degli edifi- ci, al numero degli addetti, alla natura e alle varietà delle attività agricole” (cfr. linee guida della regione liguria). la verifica del rapporto di connessione avviene normal- mente sulla base del confronto tra il fabbisogno di mano- dopera necessaria per lo svolgimento delle attività stret- tamente agricole e il fabbisogno di quella necessaria allo svolgimento delle attività sociali; alcune regioni (lom- bardia, marche) mettono a disposizione apposite tabelle per il calcolo di tale fabbisogno o indicano i relativi crite- ri in direttive (sardegna), mentre altre (liguria) rimetto- no tale valutazione al piano delle attività agricole socia- li, indicando comunque alcune «discriminanti» (es. non contribuiscono al conteggio delle attività sociali le prati- che agricole svolte col coinvolgimento di soggetti deboli che concorrono alla produzione di beni e servizi per l’a- zienda, reimpiegati nell’azienda stessa o commercializzati come tali, o le attività di manutenzione ordinaria e stra- ordinaria, ripristino e adeguamento di locali e attrezza- ture da parte dell’azienda agricola; possono contribuire al calcolo l’accoglienza, ivi compresa l’informazione delle attività aziendali, la didattica, l’accompagnamento in per- corsi, l’acquisizione/fornitura di specifiche competenze, anche professionali, purché non realizzino prodotti reim- piegati e/o commercializzati da parte dell’azienda). la dimostrazione del rapporto di prevalenza dell’at- tività agricola rispetto a quella sociale è indispensabile per garantire l’esatta individuazione della disciplina giu- ridica da applicare: regime riservato alle imprese agrico- le, disciplina dedicata alle imprese commerciali (leonar- di, ). tuttavia, come evidenziato in precedenza, non esiste ancora un accordo circa la necessità di individuare un limite quantitativo alla prevalenza, nonostante alcu- ne regioni abbiano normato in tal senso. ad esempio, la regione marche associa al calcolo in funzione del tempo-lavoro dedicato, anche quello della prevalenza numerica del personale normalmente impiegato per l’at- tività agricola rispetto a quello assunto con qualifica non agricola. il veneto, invece, associa al criterio della preva- lenza anche la conduzione da parte della fattoria sociale di una superficie minima dei terreni agricoli di almeno . mq. la sussistenza dei requisiti necessari per l’iscrizio- ne ai registri/elenchi regionali delle fattorie sociali deve la normative italiana sull’agricoltura sociale e il ruolo dell’impresa agricola ta b. . r eg is tr i r eg io na li: r eq ui si ti og ge tt iv i r ic hi es ti pe r l’i sc ri zi on e. ta b. . r eg io na l r eg is te rs : o bj ec tiv e re qu ir em en ts fo r re gi st ra tio n. r eg io ne r eq ui si ti re la tiv i a ll’ az ie nd a r eq ui si ti di n at ur a am m in is tr at iv a r eq ui si ti at tin en ti al lo sv ol gi m en to d el le a tt iv ità so ci al i pi en a di sp on ib ili tà d’ us o de lle st ru tt ur e e ar ee da d es tin ar e al l’a s c on fo rm ità ai r eq ui si ti di le gg e, st ru tt ur al i, ig ie ni co - sa ni ta ri , ur ba ni st ic i, am bi en ta li e di si cu re zz a a cc es si bi lit à in s ic ur ez za a im m ob ili e ar ee a nc he pe r so gg et ti di ve rs am en te ab ili pr es en za d i m at er ia le di p ro nt o so cc or so d ot az io ne d i st ru tt ur e e at tr ez za tu re ad eg ua te a llo sv ol gi m en to de ll’a s c on ve nz io ne co n en ti pu bb lic i e so gg et ti pr iv at ia ut or iz za zi on i/ nu lla o st a pe r lo s vo lg im en to de lle a tt iv ità a ss ic ur az io ne pe r re sp on sa bi lit à ci vi le r ap po rt o di co nn es si on e e pr ev al en za de lle a tt iv ità ag ri co le c on qu el le s oc ia li c on du zi on e se co nd o cr ite ri di s os te ni bi lit à ec on om ic a e fin an zi ar ia e ri sp et to d i pr in ci pi e tic i sv ol gi m en to in m od o co nt in ua tiv o e in c oe re nz a co n in te rv en ti e se rv iz i al la p er so na pr ev is ti da i pi an i d i z on a di a m bi to a br uz zo x x   x x   x     x   c al ab ri a x x c am pa ni a x x x x x x fr iu li- v en ez ia g iu lia x x x x x x li gu ri a x x x x x lo m ba rd ia x x x x x x m ar ch e x x x x sa rd eg na x x v en et o               x x x   fo nt e: e la bo ra zi on i c r ea p b. so ur ce : o w n el ab or at io n. francesca giarè, gabriella ricciardi, michela ascani essere provata e verificata sulla base della documentazio- ne richiesta per l’iscrizione, in primis sulla base del pia- no aziendale e dei relativi allegati. occorre ricordare, a tale proposito, che l’agricoltura sociale risulta inserita anche nel codice del terzo setto- re , fra le attività di interesse generale che possono esse- re esercitate in via esclusiva o principale “per il persegui- mento, senza scopo di lucro, di finalità civiche, solidari- stiche e di utilità sociale” (art. , lett. s). le previsioni regionali per l’iscrizione ai registri/ elenchi delle fattorie sociali richiedono un livello di det- taglio molto diverso da caso a caso, elevato in abruz- zo, campania e calabria, basso per marche, sardegna e lombardia. in tutti i casi, tranne che in sardegna (che prevede la presentazione della dichiarazione unica di av vio di attività produttiva), tra la documentazione richiesta è prevista una relazione dell’attività da svolge- re, chiamata anche scheda di progetto (lombardia), o piano delle attività agricole e sociali (liguria), o piano aziendale (veneto). il contenuto della relazione è mol- to dettagliato in abruzzo e campania, che richiedono informazioni su destinatari, finalità, modalità di attua- zione, risultati attesi, professionalità coinvolte e titolo di proprietà o contratto di affitto o altro. la campania e la calabria richiedono all’interno della relazione anche la descrizione di immobili, strutture, terreni e aree in cui si svolgono le attività di agricoltura sociale, e la presenza di attività a vantaggio di soggetti deboli svolta in colla- d.l. / , codice del terzo settore (c.t.s.). borazione con altri soggetti/istituzioni per rispondere a bisogni sociali locali. informazioni su immobili e strut- ture sono richieste per l’iscrizione ai registri anche in friuli-venezia giulia (planimetria), liguria (fabbricati utilizzati per attività di as) e veneto. sono quattro le regioni, tra quelle che hanno istitu- ito i registri degli operatori dell’agricoltura sociale, che valorizzano per l’iscrizione agli stessi la collaborazione con altri soggetti, finalizzata allo sviluppo di servizi per la comunità, con una possibile ricaduta positiva per lo svilup- po del territorio di appartenenza. la campania prevede in particolare, all’interno della relazione, una descrizione delle attività condotte a vantaggio dei soggetti deboli e in collaborazione con le istituzioni pubbliche e con il terzo settore, per attivare sul territorio relazioni e servizi che rispondano a bisogni sociali locali. la calabria richiede per l’iscrizione anche la convenzione/protocollo con enti pubblici, cooperative sociali, associazioni di volontariato, enti no profit, finalizzata alla collaborazione e al supporto specialistico nell’erogazione di servizi sociali di vario tipo e nello svolgimento di attività di agricoltura sociale. l’a- bruzzo richiede nella presentazione della domanda una dichiarazione di disponibilità allo svolgimento di attività terapeutiche anche in convenzione, lasciando spazio alla collaborazione con altri soggetti. la lombardia, infine, valorizza l’esperienza maturata in progettualità sociale, con la richiesta di eventuale documentazione attestante l’esperienza pregressa e/o altra documentazione utile alla valutazione della progettualità sociale, in particolare la presenza di convenzioni con soggetti esterni. tab. . documentazione richiesta per l’iscrizione ai registri/elenchi regionali. tab. . required documents for registration in regional registers. regione relazione delle attività/ scheda di progetto/ piano delle attività/piano aziendale destinatari finalità modalità attuazione/ attività/ servizi risultati attesi professionalità coinvolte immobili/ strutture/ aree/spazi per attività sociali collaborazione con altri soggetti titolo di proprietà/ contratto affitto o comodato d’uso abruzzo x x x x x x x calabria x x x x campania x x x x x x x x x friuli x x liguria x x lombardia x x marche x sardegna veneto x     x     x     fonte: elaborazioni crea pb. source: own elaboration. la normative italiana sull’agricoltura sociale e il ruolo dell’impresa agricola oltre alla lombardia, altre regioni che valutano l’e- sperienza e/o la formazione sono il veneto che richiede, oltre a specifica esperienza, documentazione sui requisiti di formazione, l’abruzzo, che richiede sia il curriculum aziendale, che quello del personale coinvolto nelle atti- vità, la sardegna e la calabria la frequenza di corsi di formazione per operatore di fattoria sociale. tra i docu- menti da presentare, il veneto richiede la carta dei ser- vizi della fattoria sociale, che deve comprendere il codi- ce etico. la campania prevede anche la descrizione dei criteri di sostenibilità economico/finanziaria e ambien- tale adottati. eventuale altra documentazione specifica necessaria per l’esercizio delle attività di fattoria sociale, incluso quella attestante il rispetto delle normative di settore, è richiesta con un livello di dettaglio variabile dalle regioni analizzate, e non viene qui descritta. le previsioni analizzate, in particolar modo quel- le relative alla collaborazione tra soggetti, vanno nella direzione di accompagnare e supportare l’ampliamento delle funzioni e del ruolo dell’agricoltura verso lo svi- luppo di servizi di cui vadano a beneficiare non solo i destinatari degli interventi, ma i territori e le comunità che vi insistono. la possibilità dell’imprenditore agricolo o degli altri soggetti che possono richiedere l’iscrizione ai registri/albi/elenchi regionali, di collaborare con altri soggetti pubblici, del terzo settore, ecc., genera reti in grado di rispondere in maniera innovativa a fabbisogni economici e sociali delle aree rurali e periurbane (has- sink et al., ; lanfranchi et al., ; garcìa-llorente et al., ; guirado et al., ). in quest’ottica, seppure il numero di regioni che hanno previsto specifici registri sia ancora limitato e, tra queste, ancora più esiguo sia il numero di regioni che hanno sottolineato la necessità di lavorare in un quadro di collaborazione tra attori diver- si, dall’analisi emergono interessanti potenzialità. il qua- dro normativo presente a livello regionale sembra infatti contenere la possibilità di modificare e innovare il ruolo dell’agricoltura rispetto al sistema in cui essa opera, con particolare riguardo agli aspetti sociali e alle relazioni con gli altri attori del territorio. . conclusioni il quadro normativo nazionale e regionale analizza- to conferma la tendenza ad un ampliamento delle fun- zioni dell’agricoltura, come già evidenziato in altri lavo- ri, soprattutto verso gli aspetti sociali, intesi nel senso ampio del termine. la portata e il valore assegnato a tale ampliamento delle funzioni, tra l’altro, trova conferma nell’inserimento dell’agricoltura sociale tra le attività di interesse generale realizzate anche dalle cooperative sociali e dai loro consorzi (riforma del terzo settore). dall’analisi delle modalità adottate dalle regioni emer- ge, in particolare, un approccio normativo orientato ver- so l’attribuzione agli imprenditori agricoli di un ruolo attivo nell’attuazione delle politiche del welfare (canfo- ra, ) e nelle politiche attive del lavoro. un ulteriore ampliamento sembra comprendere anche la promozione di nuove forme di collaborazione tra attori economici e non, anche appartenenti a settori e ambiti differenti. l’agricoltura sociale è stata intesa dal legislatore in primo luogo come un’opportunità per l’impresa agrico- la, anche nella sua forma associata, di realizzare funzio- ni e attività finalizzate all’inclusione sociale e lavorativa di persone vulnerabili e fornire servizi alla popolazione e alle comunità locali. tuttavia, i criteri individuati e le modalità adottate sia a livello nazionale (l. / e d.m. / ) sia a livello regionale (norme per il riconoscimento degli operatori) sembrano mettere in evidenza l’importanza di un ruolo più ampio dell’im- prenditore nei confronti del contesto in cui opera. ad esempio, il richiamo all’esigenza o all’obbligo di co-pro- gettare gli interventi insieme alle istituzioni competenti e ad altri soggetti, economici e non, avvicina l’impren- ditore agricolo al ruolo di agente di sviluppo sociale ed economico di un dato territorio e affranca dal rischio di affidare la realizzazione di interventi di interesse collet- tivo all’iniziativa individuale (canfora, ).nella stes- sa direzione va anche il riferimento fatto alla capacità dell’as di rispondere ai bisogni delle comunità e della popolazione, secondo un approccio bottom up, tipico delle politiche di sviluppo locale. l’assegnazione di un ruolo centrale all’imprenditore agricolo nel processo di costruzione di un welfare partecipativo trova conferma anche nel costante richiamo fatto dalla legge ai quadri regolativi di raccordo previsti per ogni attività di as e nel collegamento con le esigenze espresse dagli attori pubblici locali (canfora, ). la collocazione delle imprese agricole nello spazio economico si sposta da una posizione di marginalità e passività ad una di maggiore centralità e dinamicità; “le imprese agricole «sociali» diventano, dunque, soggetti attivi del welfare e luoghi di inclusione sociale, valoriz- zando così il milieu rural, altre volte oggetto di interven- to pubblico” (canfora, ). con l’agricoltura sociale, infatti, le aziende agricole diventano luogo di attuazione delle politiche non solo di settore, ma anche dell’occu- pazione, della giustizia, sociali, sanitarie, educative, ecc. ed esercitano un ruolo propulsivo nella creazione di reti, anche di scambio di conoscenze e buone prassi, con sog- getti pubblici e privati del territorio. l’analisi, tuttavia, dimostra una grande varietà di interpretazione in ambito regionale del ruolo che l’as francesca giarè, gabriella ricciardi, michela ascani può svolgere in riferimento sia alla multifunzionalità dell’agricoltura sia al sistema di welfare. tali differenze risentono sicuramente delle specificità delle pratiche di as che si sono negli anni consolidate a livello locale e che possono avere, almeno in parte, orientato le norme a livello regionale, ma probabilmente sono anche frut- to dei processi che hanno portato le diverse ammini- strazioni regionali e provinciali a redigere documenti di normazione per questa specifica materia. in alcuni casi, infatti, le regioni hanno attivato percorsi di ana- lisi e/o discussione con i portatori di interesse al fine di individuare finalità, attività e requisiti per la realizza- zione delle attività di as. È il caso, ad esempio, della liguria e della sardegna, che hanno promosso inten- se azioni di animazione territoriale prima di definire i contenuti delle rispettive leggi e, nel caso della liguria, anche delle linee guida regionali. percorso simile è sta- to seguito anche dalla regione veneto, che ha organiz- zato tavoli di confronto con i diversi attori al fine di individuare gli elementi fondamentali da inserire nella propria legge. nonostante queste buone pratiche, tutta- via, la normativa regionale, così come quella nazionale, sembra ancora lasciare spazio a dubbi interpretativi su aspetti fondamentali, quali i requisiti soggettivi degli operatori dell’as o l’eventuale prevalenza quantitativa dell’attività agricola su quella sociale, tutt’ora ogget- to di discussione. dal punto di vista della governance, inoltre, la norma nazionale e in parte quelle regionali e provinciali sembrano individuare nell’osservatorio lo strumento per coordinare le politiche agricole, sociali, del lavoro, educative, riparative, ecc. l’esperienza sin qui realizzata, tuttavia, non sembra incoraggiante, visto che a quasi anni dall’approvazione della l. / l ’osser vatorio nazionale non ha trovato ancora un punto di equilibrio per risolvere le questioni aperte e definire le linee guida che dovrebbe redigere ai sensi dell’art. della legge stessa. in sintesi, se dal punto di vista dell’operatività, l’as si presenta – ad oltre anni dall’avvio delle pri- me esperienze in italia – come un insieme di pratiche innovative capaci di rispondere alle diverse esigenze che possono sorgere a livello locale e cogliere le opportuni- tà offerte dai diversi strumenti di politica settoriale con una visione strategica di insieme, dal punto di vista del riconoscimento sembrano pesare ancora visioni settoria- li che hanno difficoltà a raggiungere una sintesi. l’analisi sin qui condotta potrebbe essere completa- ta con approfondimenti normativi e indagini sul campo che mettano in luce anche l’impatto che la riforma del terzo settore sta avendo sull’as. in questo caso, potreb- be essere interessante individuare best practices di intro- duzione di innovazione sociale, in termini non solo di innovazione di processo, ma anche di «oltre prodotto», ossia “dei modi stessi di intendere i servizi alle perso- neperché realizzati «con le persone»” (barbero vignola, vecchiato, ). bibliografia adornato f. 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( ). soluzioni per il futuro dell’economia sociale. studi zancan , politiche e servizi : - , maggio . 	italian review of agricultural economics 	vol. , n. – 	firenze university press 	poorer, but richer. an ecosystem services account for campania, calabria and sicily 	innovation in the italian sector of vending machines. between growth and search for sustainability 	individuazione e implementazione di indicatori di benessere animale: aspetti tecnici e impatto economico 	la normative italiana sull’agricoltura sociale e il ruolo dell’impresa agricola 	eu border rejections of unauthorized gm food and the trade deflection effects 	valorizzazione del latte «prodotto di montagna»: un’analisi esplorativa sulle scelte di acquisto dei consumatori animals article paws for thought: a controlled study investigating the benefits of interacting with a house-trained dog on university students mood and anxiety emily l r thelwell department of psychology, university of warwick, coventry cv al, uk; emily.thelwell@warwick.ac.uk received: september ; accepted: october ; published: october ���������� ������� simple summary: this study investigates whether interacting with a dog would have a positive effect on university students’ mood and anxiety. students were assigned to either watch videos of a dog or interact directly with a dog. several measures were collected both before and after their assigned conditions to evaluate their mood and anxiety levels and to assess for possible changes. the results indicated that participants in both conditions experienced a reduction in their anxiety and an improvement in their mood across time, however those who directly interacted with a dog experienced a greater decline in anxiety and improved mood scores. abstract: university students have been found to have higher rates of psychological distress than that of the general population, which reportedly rises significantly upon starting university and does not return to pre-university levels throughout their time in university. it is therefore highly important to find ways to improve student health and well-being. one way that may help is by interacting with animals. therefore, the purpose of this study was to determine whether interacting with a dog would have a positive effect on university students’ mood and anxiety. this study assigned university students to either the experimental condition (dog interaction, n = ) or to the control condition (dog video, n = ). the students completed the positive and negative affect schedule-expanded form (panas-x), state-trait anxiety inventory (stai) and the pet attitude scale before their assigned conditions, to evaluate their mood and anxiety levels and attitudes to animals. the participants again completed the stai and panas-x form after their condition, to assess for possible changes in anxiety and mood. the findings of the study indicated that all participants, regardless of condition, experienced a reduction in their anxiety and an improvement in their mood across time. however, directly interacting with a dog resulted in greater declines in anxiety and improved mood scores, more so than watching a video. consequently, it appears there are psychological benefits to be gained by students from interacting with dogs and it is hoped this study will help to inform future best practices in designing student dog interventions. keywords: anxiety; mood; pet therapy; student well-being; dog intervention . background university can be a very stressful time for students, especially when they are faced with a new environment as well as the social, academic and emotional challenges that are part of university life. the transition from late adolescence into emerging adulthood is a key developmental period marked by new challenges, changing roles and increased responsibilities [ ]. for many students, moving to university is their first time being away from home and they may therefore experience homesickness or have trouble settling while away from friends and family. in particular, first year students are more prone to coping with difficulties when adjusting and animals , , ; doi: . /ani www.mdpi.com/journal/animals http://www.mdpi.com/journal/animals http://www.mdpi.com https://orcid.org/ - - - x http://dx.doi.org/ . /ani http://www.mdpi.com/journal/animals https://www.mdpi.com/ - / / / ?type=check_update&version= animals , , of learning to handle their new responsibilities. these new challenges may be even more difficult for those individuals who are suffering from psychological issues, such as anxiety and depression. university students have been found to have higher rates of psychological distress than that of the general population [ ]. furthermore, students’ levels of psychological distress have been reported to rise significantly upon initially starting university and do not return to their pre-university levels throughout their time in university [ , ]. brougham et al. [ ] examined the stresses that come from transitioning into university life, the sources of stress and students’ coping strategies. the sources of stress include financial, academic, social, family and daily hassles (e.g., being late). avoidance, self-punishment and self-help were just some of the coping strategies reported. according to the american college health association, [ , ]) stress is the most commonly reported barrier to students’ academic success. the american college health association’s national assessment was used to survey american university students with students reporting that within the past year, . % felt overwhelming anxiety, % felt very lonely, % felt very sad, % felt so depressed that they found it difficult to function and . % seriously considered suicide [ , ]. furthermore, according to the centre for collegiate mental health annual report [ ], , students at the universities and colleges contributing to the report sought counselling during the academic year, – . the three most common psychological issues faced by these students were anxiety ( . %), depression ( . %), stress ( . %). the report also indicated that anxiety and depression are the most common presenting concerns (as assessed by clinicians) and are the only presenting concerns that have demonstrated a clear growth trend over the last four years whilst other concerns appear to be stable. the report also stated that, for the seventh year in a row, the lifetime prevalence rates of threat-to-self characteristics (serious suicidal ideation, non-suicidal self-injury and suicide attempts) increased among students seeking treatment. in another study, beiter et al. [ ] studied stress, anxiety, and depression among college students. the researchers found that % experienced anxiety, % struggled with depression and % of students reported dealing with stress. the institute of public policy research [ ] analysis suggests that, in the united kingdom, between the years – , , uk-domiciled first-year students disclosed a mental health condition which is almost five times the number reported in – . furthermore, the report states that between and , the number of student suicides increased by % (from to ). the number of students who dropped out of university due to experiencing mental health problems had increased by % in the years – when compared to – figures. the universities themselves have also reported experiencing significant increases in demand for counselling services over the past five years, with % of those universities reporting that the demand has increased by over %. given these figures, it is clear that the transition into university can be incredibly stressful, and as a result, this population is particularly vulnerable to developing or exacerbating depressive symptoms [ ]. with this in mind, and the impact that these issues may have on students’ academic success, there is a clear need to find ways to reduce stress and improve student health and well-being. one way that may help is interacting with animals. it is commonly reported in the media that owning a pet can have a positive impact on our physical health and wellbeing, such as increased physical activity, increased social interactions and reduced blood pressure [ ]. studies have also indicated that there are some psychological benefits to be gained from pet ownership. over the years, research has shown that pet owners, and particularly dog owners, have greater life satisfaction, enhanced self-esteem, reduced levels of loneliness and anxiety, more ambition and more positive moods [ – ]. animal assisted therapy (aat) has been shown to improve mood in children and adults with physical or mental health problems [ – ]). there are also a number of studies demonstrating various effects of animals on self-reported anxiety in humans. however, the effects of pets on anxiety are animals , , of mixed, with some studies finding significant effects and others finding no statistically significant difference [ – ]. occasionally reported by the media, are the studies which have shown in some cases a negative effect. gilbey, mcnicholas and collis [ ] administered the ucla–loneliness scale to participants living in england who were interested in owning a pet. they then retested the participants months later and found that those individuals who had acquired a pet ( of the ) were just as lonely as they had been before getting their pets. moreover, they were no happier than the participants who had not gotten a pet. additionally, another study into older adults indicated that those who were considered extremely attached to their dogs tended have higher levels of depression than the participants who did not have as deep an attachment to their dogs [ ]. bao and schreer [ ] sought to explore overall life satisfaction, negative emotions, and positive emotions through two questions and two hypotheses. firstly, is there a direct correlation with the happiness of the owner whether they owned a pet or not; secondly, whether there was a difference in happiness when comparing dog owners to cat owners [ ]. there were participants between the ages of – who completed numerous questionnaires and the researchers found that there were no significant differences in measured happiness between those with pets and those without. the same analysis was conducted for those people who identified themselves as either a cat person or a dog person and the results showed that there were no differences in positive emotions or overall life satisfaction. however, those individuals who identified as a cat person displayed significantly higher negative emotions than those who identified as a dog person [ ]. therefore, dog visits do not always have a therapeutic effect and there is a need for further research in this area before the benefits can be substantiated. however, whilst previous studies appear to have mixed findings, they do suggest that there may be numerous benefits from aat programs, including decreased depression and anxiety and it is clear that there is still much to uncover. despite the mixed findings of effectiveness, aat programmes are starting to become increasingly popular on university campuses as they appear to offer an effective option for students struggling with anxiety and stress [ ]. the popularity is likely due to the low cost. most university pet therapy programs are free for students and universities as most of the dog handlers are volunteers [ ]). these programmes involve bringing animals and their handlers onto the campus to interact with students. a common format for university aat programmes involves a large group of students interacting with animals during a single drop-in session [ , ]. the advantage to this format is that a far larger number of students can participate over a shorter period than other format types which require a longer period of time [ ] and are more resource-intensive which have been found to have positive effects on students’ mental health and well-being. however, the shorter sessions held in a group format could dilute the immediate as well as the longer lasting benefits of such interventions. it is only recently that empirical evidence has begun to emerge surrounding the effects of the single drop-in therapy dog session format. thus far, studies have indicated that a single drop-in group therapy dog session can increase students’ feelings of connection to their campus, temporarily relieve homesickness and stress [ ], improve mood and well-being, and decrease anxiety [ ]. however, it would appear as though the effects are relatively short-lived as despite an initial recording of effects immediately following the therapy dog session, there were no effects detected two weeks after the sessions took place [ ]. nonetheless there is some qualitative evidence to suggest that the students believe that therapy dog sessions provided them with lasting benefits when asked three months after the sessions [ ]. in the united states, % of college freshmen were in favour of having a pet therapy programme on campus [ ]. it was also recently reported that % of surveyed universities in the united states reported having such programmes, many of these exclusively involved dogs [ ]. katcher and beck [ ] revealed that interacting with dogs can reduce physiological indicators of stress, depression, and loneliness. interacting with dogs has also been shown to encourage fostering social connections with new people [ ] as well as reduce anxiety and increase positive affect [ ]. animals , , of a large number of university students suffer from homesickness, whilst for some this is only a minor issue, for others the homesickness can become so severe that they seek out counselling [ ]. the usefulness of aat as a treatment for homesick first-year university students was investigated in a recent study, where a treatment group participated in an -week program with trained therapy dogs and their handlers [ ]. the students were assigned a -min session on the friday of each week. during these sessions, the student would interact with an assigned dog for min before being allowed to interact with any dog present for the remaining min. a non-treatment control group was informed that they were on a waiting list and never received the treatment. the findings indicated that the intervention was successful in increasing satisfaction with life and decreasing homesickness. pets might compliment whatever family support an individual is already receiving or otherwise provide support which is not being provided by a missing family member [ ]. one other study found that pets provided social support even for those individuals who are already receiving support from others, and that just thinking about their pets was shown to alleviate the effects of social rejection [ ]. furthermore, adamle, riley, and carlson [ ] found that first year students said that their pets provided comfort and support during stressful times. reduced levels of perceived stress have been observed to be associated with increased happiness and researchers have suggested that finding ways to lower stress may facilitate interventions aimed at reducing depression [ ]. the impact pets can have in reducing stress has been well-documented. first year students who were asked to view a presentation about pet therapy before being asked to interact with a therapy dog [ ]. the vast majority of the participants said that they missed their pets, that their pets had stayed at home, and that they thought it would be advantageous for therapy dogs to visit campus and help with stress. the researchers also suggested that the students may be helped to form new social connections with others by having access to therapy dogs. therefore, therapy dogs might also lessen homesickness in students and perhaps enable the students to make new friends and not only reduce stress. this in turn could lead to an overall more enjoyable university experience. indeed, simply interacting with a dog in pet therapy programmes has also been shown to positively influence college students’ emotional well-being in addition to reducing stress and helping to establish new relationships among the students [ ]. polheber and matchock [ ] investigated various types of social support and its influence on stress reactivity among university students. the participants were randomly assigned to one of three conditions: a novel dog, a friend, or no social support during the experimental procedure. the participants were able to interact with their friend or with the dog before the trier social stress test (tsst) began—this test contains an arithmetic and speech task. during the trier stress test, either the friend or dog stayed nearby, or in the case of the no social support group were instructed to sit and relax. the participants’ cortisol levels and heart rates were measured throughout the study. the study found that the participants in the dog condition experienced reduced heart rate and reduced cortisol levels during the tsst in comparison with the other two groups who were not in the presence of a dog. in fact, those who were not in the presence of a dog proved to have higher cortisol levels after the induced stress. the researchers reasoned that this finding was because other humans have the ability to perceive and judge their own friends, whereas dogs can provide a non-judgmental support system for humans [ ]. mcdonald et al. [ ] sought to find a similar result to polheber and matchock [ ] by examining the effects of a novel dog on university students stress prior to exams. the researchers measured the students’ blood pressure levels both before and after the experiment in two different groups, min prior to a mid-term exam. the first group was instructed that they could do any quiet activity of their choice, whilst the second group was allowed to play with a novel dog. the researchers found that the participants in the group that interacted with a novel dog had significantly lower blood pressure levels after finishing the experiment in comparison to the control group. interestingly, the control group’s blood pressure was actually found to have increased despite being able to do any quiet activity that they wanted. mcdonald et al. [ ] determined that exposure to any dog, whether it be trained or animals , , of untrained, has the potential to reduce blood pressure levels, which can therefore lead to decreased stress in students [ ]. animals have also been shown to have noticeable effects on measurable physiological correlates of stress. recent research conducted by somerville et al. [ ] examined the effects of physical contact with a dog and a cat on blood pressure and pulse among university students ( males and females). the participants who held a dog or cat experienced an immediate decrease in diastolic blood pressure. however, this reduction in blood pressure did not occur during the contact with an animal and instead only occurred after the contact had taken place. there were no significant gender differences found, however females did have lower blood pressure than males [ ]. interacting with a dog has also been shown to decrease cortisol levels, and therefore indicate a reduction in stress levels in university students, who themselves did not own a pet. however, this effect was not found for those students who were pet owners [ ]. furthermore, the immunoglobulin iga, which is another biomarker for stress, was not shown to be affected in either group of participants after interacting with a dog. wilson [ ] examined the effect of a pet on psychological consequences of stress (i.e., state and trait anxiety levels) of undergraduate students comparing three test conditions (i.e., reading quietly, reading aloud and interacting with a dog). the findings of the study were that reading quietly and interacting with the dog both effected anxiety levels. however, there was more effect seen by reading quietly than by interacting with a dog. there were no significant differences found when examining the interactions among the variables. whilst a decrease in anxiety level was found after interacting with a pet, pet owners did not report using their pet as a social support significantly more than those who were previously pet owners. furthermore, whilst the results did indicate that the participants experienced lower physiological and psychological response levels after interacting with a pet, a similar effect was also seen by reading quietly. in addition to reducing stress, therapy dogs have also been shown in recent research to reduce anxiety levels in university students. shearer et al. [ ] compared the effects that interacting with a therapy dog and mindfulness meditation had on the stress and anxiety levels of students. whilst interacting with a therapy dog was proven to lower anxiety and stress levels, the mindfulness meditation therapy lowered the students’ anxiety levels more than the sessions with the therapy dog. however, potentially the biggest disadvantage of owning a pet and therefore of longer-term pet interventions, is the possibility for the animals used to cause distraction from studies, work and other important tasks. torres et al. [ ] found that in their study, the participants were distracted by even just pictures of animals when answering questions on a math exam. likewise, foreman et al. [ ] in her review of the research saw the potential for these animals to potentially increase unsolicited social attention or cause a distraction from work tasks. however, these studies have both suggested that the occurrence of a distraction could decrease as the novelty of the dog wears off, although more research is needed to show whether this would be the case [ , ]. the other disadvantage to using pets is the impact on the owner or client through the loss and grief experienced after the pet dies. the loss of a pet can be a tremendously emotional event and as a university student, this could cause a distraction from studies and social activities. furthermore, eckerd et al. [ ] report that many bereaved pet owners experience symptoms of feeling depressed, numbness, crying, feeling guilt, disbelief, or experiencing a sense of loneliness. given the multitude of different feelings that can be experienced, in addition to the already stressful situations at university, students can be easily distracted from their priorities. this would also be counter intuitive given that the purpose of this type of therapy is to reduce feelings of stress, anxiety and depression. as outlined, the previous literature on whether pets can have a positive effect on human wellbeing is divided. even less is known about the effect of owning pets on anxiety and depression in university students and adolescences, as a substantial portion of existing research has focused on the effects of pets on stress in university students or have otherwise focused on mental health in patients and the elderly. however, increasingly high numbers of adolescents are affected by mental health issues and the incidence of mental health issues increases during adolescence, peaking during early adulthood [ ]. animals , , of . the present study most of the previous research which has investigated the role that dogs may play in the mental health and wellbeing of humans has involved the elderly and children [ , ], with a few studies also looking at the university demographic. however, previous studies that have looked at this demographic have primarily focused on stress as an outcome variable and whilst correlations between stress, anxiety and depression might be drawn, there is little conclusive research surrounding the impact of pets on the latter two within this demographic. this study therefore aims to extend the parameters of this by looking at mood and anxiety. furthermore, most of the previous studies have focused on those individuals who are either critically ill or have behavioural disabilities [ – ]. additionally, whilst there are a considerable number of studies that have examined the impact of certified therapy dogs on humans, there is very little research on the benefits of a novel dog on those populations. a novel dog is a typical house-trained dog that is not purposefully trained like therapy dogs to know how to react in response to human emotions, instead working off their own instinct, and are unfamiliar to the participant [ ]. this gap in the research was discovered in both studies by polheber and matchock [ ] and mcdonald et al. [ ]. lastly, there are only a few studies which allow participants to have individual sessions, with many studies and aat sessions operating single drop-in sessions [ , ]. as such, the purpose of the proposed study is to extend research into the effect of pet and human interactions, while also hoping to address some of the limitations. furthermore, despite the growing body of research on the interaction between humans and animals, the notion that pets have a positive impact on human health and well-being still remains a hypothesis which needs confirmation rather than being an established fact. this study involved university students interacting with a house-trained -year-old female golden retriever of which they were unfamiliar. this specific breed of dog was chosen for this study because it is a popular standard breed in the uk and is not considered to be an intimidating or dangerous breed. retrievers have also been shown to elicit more smiles and verbal responses than other breeds, such as rottweilers [ ]. additionally, a house-trained dog should provide the most realistic results as possible. those students who may have a dog at their family homes are more likely to own a typical house-trained dog rather than a therapy dog or will have otherwise come across more house-trained dogs in their lives than therapy dogs. the question to be addressed is whether interacting with a pet improves mood and reduces anxiety levels. this question is interesting because it would suggest that pets have a positive impact on a person’s physiological state and thus, have potential important health implications for university students through the translation into appropriate interventions concerning pet ownership. at the core, this research aims to ask, “can students’ mood and anxiety be enhanced from spending time with a pet dog brought to campus?”. to examine whether interaction with a dog might impact college students’ mood and anxiety levels, a quasi-experimental two group pre/post design study was conducted. it was hypothesised that there would be a significant positive effect on those university students’ mood and anxiety levels that had experienced physical interaction with a dog, compared to the control group that watched a video montage of golden retriever clips. on an exploratory basis, possible gender differences were additionally examined. it has been shown that female students benefit more from therapy dog sessions than male students [ ], therefore suggesting the need for research into gender differences. . methods . . ethical considerations it is important to consider ethics when dealing with studies that involve humans and animals. it is important to keep in mind what the dog is being subjected to and if the activities are fair, as well as animals , , of if it is a fair environment for the dog. ethical considerations when conducting research with human subjects are equally important. when testing for aversive or stressful situations or asking questions that could be potentially distressing, it is essential to ensure it is not damaging or harmful to the person [ ]. therefore, ethical approval was sought from the university of warwick in march and was approved in may . additionally, approval was sought and granted by the animal welfare and ethical review body (awerb. / - ) as well as the university’s health and safety department. third party insurance was also obtained for the dog participating in the study and the documentation was provided to the insurance office. for the duration of the study, it was always ensured that a first aider was present during the testing times. the room cleaning team were always made aware that the room needed to be cleaned after every testing session and on one occasion being asked to return to ensure a thorough removal of hair. the dog was checked not to have a history of biting people and that this was not considered a dangerous breed. the dog in this experiment was granted the ethical approval to spend min with each of participants before receiving a minimum of a min break where it had access to water and was allowed to urinate or defecate as required (totally a time period of min). these -min sittings were to be repeated no more than three times per day. the dog would perform these for a maximum of days in a row before being given a minimum days break. the dog’s usual daily routine was maintained during the testing periods. the dog was constantly monitored for signs of distress by its owner both during and after the sessions and did not display any concerns. if the dog had displayed signs of distress, the study would have stopped until the dog was well enough to resume or otherwise, a replacement would have been found. . . participants the participants in this study were students who were attending the university of warwick. of those students, identified themselves as male, as female, as other (please describe if you wish) and chose the option prefer not to say. their age range was from to years old. the students were studying a range of subjects and were a mix of first year (n = ), second year (n = ), third year (n = ) and post graduate (n = ). the students were recruited through a posting on the participant recruitment website sona and did not receive any form of reward for participating in the study. the participants were screened on the sign-up page as well as via a follow up email from the researcher for allergies towards dogs. . . measures demographic survey. the participants were requested to provide some demographic information that consisted of nine questions including age, gender, ethnicity, what year of study they were in, if they have a pet dog, how frequently they interact with a dog and if they consider themselves as a dog person or a cat person. pet attitude scale (pas). this measure included statements rated on a -point likert scale from (strongly disagree) to (strongly agree) [ ]. the participants were asked to rate certain statements such as “i love pets” or “i spend time every day playing with my pet (or i would if i had one).” the current study had a cronbach’s alpha of . . state-trait anxiety inventory (stai). this measure included six statements that were rated on a (not at all) to (very much) likert scale [ ]. the participants reported how they felt in the moment, involving statements such as “i feel tense” or “i feel content”. the current study had a cronbach’s alpha of . . positive and negative affect schedule-expanded form (panas-x). this measure involved words and phrases that described different feelings and emotions on a (very slightly or not at all) to (extremely) likert scale [ ]. the participants indicated how much they felt certain emotions, such as animals , , of how happy, upset or nervous they felt in the moment. negative affect had a cronbach’s alpha of . , sadness scores had a cronbach’s alpha of . . positive affect had a cronbach’s alpha of . and joviality scores had a cronbach’s alpha of . . . . procedure the participants were assigned to one of two groups, the experimental or control. the assignment was based upon which timeslot the participants chose, since each of the two conditions were held on different days unbeknownst to the participants. seven days were dedicated to the participants coming in spread out over the course of a three-week time period. the first week of the experiment was dedicated to the experimental group and the second week was dedicated to the control group. during the third week, the allocation of the group was dependent on the dogs previously allocated breaks and daily routine. those participants who had selected a timeslot which coincided with the dog’s arranged break would participate in the control variable. when all participants arrived for their selected timeslot, they were asked to read an information sheet, with the appropriate adjustments to reflect the activity in which these participants were going to engage and were given their own unique identification code. the participants were informed of their right to withdraw at any given point in the study. they would then be asked to fill out the consent form, demographic questionnaire, pas, stai and panas-x before the experiment was conducted. experimental group: those participants in the experimental group (n = ) played with the dog for ten minutes. the time was recorded on an iphone stop watch to ensure the time for all participants was consistent. before introducing the participants to the dog, the participants were asked to verbally confirm that they were happy to be in a room with and to interact with a dog. the participants were also asked to verbally confirm once again that they had no allergies to dogs. only upon this confirmation were the participants allowed to enter the room. the dog that participated in the experiment was a -year-old female golden retriever. the dog was consistently energetic and eager to meet each new participant and play. the participants were informed they could freely play with the dog, including sitting with her, petting her, throwing toys which squeaked for her, talking to her, and cuddling her. some participants would be more enthusiastic in their free play than others and would more actively engage with her, whilst others preferred to remain in one place and fuss her quietly. control group: those in the control group (n = ) watched a ten-minute-long video montage which was created by the researcher. this video featured multiple amusing or cute clips of golden retrievers, the majority of which were of the retriever used in the study, the others were acquired from youtube. the video was always played on a hp spectre x laptop and the screen brightness was the same for each participant. after the participants in each condition had finished their dog-related activity, they were requested to complete the post-test surveys (panas-x and stai) to determine if there were any changes to their mood and anxiety scores when compared to their pre-test survey scores. upon completion of the surveys, a debriefing statement was issued for the participants to read and take with them. each session lasted approximately forty minutes, including the time to complete the established measures. . results the data was analysed to investigate the study’s hypothesis that there would be a significant positive effect on those university students’ mood and anxiety levels in those students that had experienced physical interaction with a dog, compared to the control group that watched a video montage of golden retriever clips. both groups’ pet attitude analyses scores were firstly examined to ensure that the participants’ attitudes toward pets did not differ between groups, as well as age, gender and whether they consider themselves to be a cat or dog person, or neither. following this, the mood and anxiety scores were explored as a function of group and time (before exposure to dogs and after). animals , , of . . preliminary analyses age: an independent t-test was run to explore whether or not the participants’ ages were significantly different for the experimental condition compared with the control condition. no statistically significant difference was found between conditions for the participants’ ages (experimental group m = . ; control group m = . ), t( ) = − . , p = . . therefore, each of the conditions contained participants of a similar age. gender: a chi-square test was run to explore whether or not the participants’ genders were significantly different for the experimental condition compared with the control condition. no statistically significant difference was found between conditions for the participants’ genders χ( ) = . , p = . . the control group consisted of females and males, the experimental group consisted of females and males. therefore, each of the conditions contained an overall equal split of genders. dog or cat person: a chi-square test was run to explore whether or not the split between dog and cat people was significantly different for the experimental condition compared with the control condition. no statistically significant difference was found between the conditions for whether the participants considered themselves a cat or a dog person χ( ) = . , p = . . there was a total of participants who considered themselves a cat person (experimental = , control = ), dog people (experimental = , control = ) and participants who considered themselves neither (experimental = , control = ). therefore, each of the conditions contained an overall equal split of cat and dog people. pet attitude scores: an independent t-test was run to explore whether or not the participants’ pet attitude scores were significantly different for the experimental condition compared with the control condition. no statistically significant difference was found between the conditions for the pet attitude scores (experimental group m= . ; control group m = . ), t( ) = . , p = . . therefore, each group of participants had similar attitudes towards pets overall. . . main analyses . . . stai anxiety scores a condition (control and dog) × time (time and time ) repeated measures anova conducted on anxiety scores was also performed. the post hoc comparisons using the bonferroni correction indicated that there was a main effect for condition (f ( , ) = . , p = . ). specifically, the participants in the experimental condition (before m = . , after m= . ) reported having lower anxiety scores than the control group (before m = . , after m = . ). there was also a main effect for time (f ( , ) = . , p = . ). particularly, the participants reported having lower anxiety scores in the post survey (time ) (m = . ) than at time (m = . ), see table . furthermore, there was a significant interaction between condition and time (f ( , ) = . , p =. ) d = . . as can be seen in figure , the participants in this study experienced a decrease in their anxiety scores following their exposure to dogs, whether they directly interacted with a dog or simply observed dogs on a video. however, this was significantly greater in the experimental condition than the control. table . descriptive statistics: anxiety. condition mean std. deviation n before control . . dog . . total . . after control . . dog . . total . . animals , , of figure . the mean state-trait anxiety inventory (stai) anxiety scores are plotted for the participants in the control condition and the participants in the experimental (dog) condition before their interaction and after their interaction with %-confidence-interval error bars. . . . panas-x negative affect scores a condition (control and dog) × time (time and time ) anova conducted on the general negative effect was performed. the post hoc comparisons using the bonferroni correction indicated that there was no main effect for condition found (f ( , ) = . , p = . ). specifically, the participants in the dog condition (before m = . , after m= . ) did not report having a lower general negative affect than the control group (before m = . , after m = . ). however, there was a main effect for time (f ( , ) = . , p = . ). particularly, the participants reported having a lower general negative affect in the post survey (m = . ) than at the pre survey (m = . ), see table . there was also a significant interaction between condition and time (f ( , ) = . , p = . ) d = . . table . descriptive statistics: negative affect. group mean std. deviation n before control . . dog . . total . . after control . . dog . . total . . as can be seen in figure , the participants in this study experienced a decrease in their general negative scores following their exposure to dogs, whether they directly interacted with a dog or simply observed dogs on a video. animals , , of figure . the mean general negative affect scores are plotted for the participants in the control condition and the participants in the experimental (dog) condition before their interaction and after their interaction with %-confidence-interval error bars. . . . panas-x sadness scores a condition (control and dog)× time (time and time ) repeated-measures anova conducted on sadness scores was also performed. a main effect for condition was found (f ( , ) = . , p = . ). specifically, the participants in the experimental condition (before m = . , after m = . ) reported lower sadness scores than the control group (before m = . , after m = . ). there was also a main effect for time (f ( , ) = . , p = . ). particularly, the participants reported having lower sadness scores in the post survey (m = . ) than at the pre survey (m = . ), see table . furthermore, there was a significant interaction between condition and time (f ( , ) = . , p = . ) d = . . as can be seen in figure , the participants in this study experienced a decrease in their sadness scores following their exposure to dogs, whether they directly interacted with a dog or simply observed dogs on a video. however, this was significantly greater in the experimental condition than the control. table . descriptive statistics: sadness. group mean std. deviation n before control . . dog . . total . . after control . . dog . . total . . animals , , of figure . the mean sadness scores are plotted for the participants in the control condition and the participants in the experimental (dog) condition before their interaction and after their interaction with %-confidence-interval error bars. . . . panas-x general positive affect scores a condition (control and dog) × time (time and time ) repeated-measures anova conducted on general positive affect was performed. the post hoc comparisons using the bonferroni correction indicated that there was no main effect for condition found (f ( , ) = . , p = . ). specifically, the participants in the experimental condition (before m = . , after m = . ) did not report having a higher general positive affect than the control group (before m = . , after m = . ). there was however a main effect for time (f ( , ) = . , p = . ). the participants reported having a higher general positive affect in the post survey (m = . ) than before the survey (m = . ), see table . there was also a significant interaction between condition and time (f ( , ) = . , p = . ) d = . . therefore, the participants in the experimental condition and the control condition did not experience a significant increase in their positive affect scores following their interactions. table . descriptive statistics: general positive affect. group mean std. deviation n before control . . dog . . total . . after control . . dog . . total . . as can be seen in figure , the participants in this study experienced an increase in the general positive affect scores following their exposure to dogs, whether they directly interacted with a dog or simply observed dogs on a video. animals , , of figure . the mean for general positive affect is plotted for the participants in the control condition and the participants in the experimental (dog) condition before their interaction and after their interaction with %-confidence-interval error bars. . . . panas-x joviality scores a condition (control and dog) × time (time and time ) repeated-measures anova conducted on joviality scores was also performed. the post hoc comparisons using the bonferroni correction indicated that there was a main effect for condition (f ( , ) = . , p = . ). specifically, the participants in the experimental condition (before m = . , after m = . ) reported having higher joviality scores than the control group (before m = . , after m = . ). there was also a main effect for time (f ( , ) = . , p = . ). particularly, the participants reported having higher joviality scores in the post survey (m = . ) than at the pre survey (m = . ), see table . furthermore, there was a significant interaction between condition and time (f ( , ) = . , p = . ) d = . . table . descriptive statistics: joviality. group mean std. deviation n before control . . dog . . total . . after control . . dog . . total . . as can be seen in figure , the participants in this study experienced an increase in their joviality scores following their exposure to dogs, whether they directly interacted with a dog or simply observed dogs on a video. however, this was significantly greater in the experimental condition than the control. animals , , of figure . the mean joviality scores are plotted for the participants in the control condition and the participants in the experimental (dog) condition before their interaction and after their interaction with %-confidence-interval error bars. . . exploring gender . . . stai anxiety anxiety scores: a gender (male and female) × condition (control and dog) x time (time and time ) repeated-measures anova conducted on anxiety scores was also performed. there was no significant effect found for gender (f ( , ) = . , p = . ), meaning there were no significant differences between the two genders. specifically, the female participants’ scores (before m = . , after m = . ) were not significantly different from the male participants’ scores (before m = . , after m = . ), see table . there was also no interaction found for time and gender (f ( , ) = . , p = . ) nor was an interaction found between gender and group (f ( , ) = . , p = . ). there also was no significant interaction between time, gender and group (f ( , ) = . , p = . ). table . descriptive statistics: anxiety and gender. condition gender mean std. deviation n before control female . . male . . total . . dog female . . male . . total . . total female . . male . . total . . after control female . . male . . total . . dog female . . male . . total . . total female . . male . . total . . animals , , of . . . negative affect scores a gender (male and female) × condition (control and dog) × time (time and time ) repeated-measures anova conducted on general negative scores was also performed. there was no significant effect found for gender (f ( , ) = . , p = . ), meaning there were no significant differences between the two genders. specifically, the female participants’ scores (before m = . , after m = . ) were not significantly different from the male participants’ scores (before m = . , after m = . ), see table . there was also no interaction found for time and gender (f ( , ) = . , p = . ) nor was an interaction found between time, gender and group (f ( , ) = . , p = . ). there was however a significant interaction between group and gender (f ( , ) = . , p = . ). specifically, the males in the control condition had a much lower negative affect scoring before the intervention (m = . ) than those males placed in the dog condition (m = . ), but those in the dog condition had the greater decline in their negative affect scores after the intervention took place (m = . ) than the control (m = . ). table . descriptive statistics: negative affect and gender. group gender mean std. deviation n before control female . . male . . total . . dog female . . male . . total . . total female . . male . . total . . after control female . . male . . total . . dog female . . male . . total . . total female . . male . . total . . . . . sadness scores a gender (male and female) × condition (control and dog) × time (time and time ) repeated-measures anova conducted on sadness scores was performed. there was no significant effect found for gender (f ( , ) = . , p = . ), meaning there were no significant differences between the two genders. specifically, the female participants’ scores (before m = . , after m = . ) were not significantly different from the male participants’ scores (before m = . , after m = . ), see table . there was also no interaction found for time and gender (f ( , ) = . , p = . ) nor was an interaction found between group and gender (f ( , ) = . , p = . . there was also no a statistically significant three-way interaction between time, gender and group (f ( , ) = . , p = . ). animals , , of table . descriptive statistics: sadness and gender. group gender mean std. deviation n before control female . . male . . total . . dog female . . male . . total . . total female . . male . . total . . after control female . . male . . total . . dog female . . male . . total . . total female . . male . . total . . . . . positive affect scores a gender (male and female) × condition (control and dog) × time (time and time ) repeated-measures anova conducted on positive affect scores was performed. there was no significant effect found for gender (f ( , ) = . , p = . ), meaning there were no significant differences between the two genders. specifically, the female participants’ scores (before m = . , after m = . ) were not significantly different from the male participants’ scores (before m = . , after m = . ), see table . there was also no interaction found for time and gender (f ( , ) = . , p = . ) nor was an interaction found between group and gender (f ( , ) = . , p = . . there was also no significant interaction found between time, gender and group (f ( , ) = . , p = . ). table . descriptive statistics: positive affect and gender. group gender mean std. deviation n before control female . . male . . total . . dog female . . male . . total . . total female . . male . . total . . after control female . . male . . total . . dog female . . male . . total . . total female . . male . . total . . animals , , of . . . joviality scores a gender (male and female) × condition (control and dog) × time (time and time ) repeated-measures anova conducted on joviality scores was performed. there was no significant effect found for gender (f ( , ) = . , p = . ) meaning there were no significant differences between the two genders. specifically, the female participants scores (before m = . , after m = . ) were not significantly different from the male participants scores (before m = . , after m = . ), see table . there was also no significant interaction found for time and gender (f ( , ) = . , p = . ) as well as for group and gender (f ( , ) = . , p = . ). nor was there a statistically significant three-way interaction between time, gender and group (f ( , ) = . , p = . ). table . descriptive statistics: joviality and gender. gender group mean std. deviation n before control male . . female . . total . . dog male . . female . . total . . total male . . female . . total . . control male . . after female . . total . . dog male . . female . . total . . total male . . female . . total . . . discussion the purpose of the present study was to determine whether there would be a positive effect on university students’ mood and anxiety scores after interacting with a dog. consistent with past research, the results of this study do provide evidence that interacting with a dog does have a positive effect on the students’ emotional well-being. this study found considerable increases in happiness and reductions in both anxiety and sadness scores immediately after the students interacted with a dog. the findings of this study are in line with previous research indicating there are short-term psychological benefits of interacting with a dog [ , , , , ]. however, this study fills a research gap as unlike much previous research on this topic which uses a typical single drop-in group therapy dog session [ , ], this study was designed to allow the students to interact with the dog on an individual basis. as past research has primarily focused on children and the elderly or otherwise the impact on stress in students, there has been limited research conducted on the university population specifically with regards to the role of dogs influencing anxiety and depression. therefore, this study aimed to fill this research gap. . . anxiety it was hypothesised that there would be a significant positive effect on those university students’ anxiety levels that had experienced physical interaction with a dog, compared to the control group who watched a video montage of golden retriever clips. in the present study, this hypothesis was supported because a main effect for condition was found and the participants in the dog condition reported having lower anxiety scores than in the control group who watched a video. thus, it appears animals , , of that the treatment did have a positive effect on the anxiety levels of the university students. this result supports the previous research findings of cole et al. [ ], in which it was found that hospital patients experienced the greatest decrease from baseline in state anxiety scores after interacting with a dog when compared with the other groups. a main effect of time was also found for anxiety, with participants reporting lower levels of anxiety in the post survey for both conditions. as there was also a significant interaction between condition and time, it can be concluded that the participants in this study experienced a decrease in their anxiety scores following their exposure to dogs, whether they directly interacted with a dog or simply observed dogs on a video. however, given the main effect of condition, this was significantly greater in the experimental condition than the control. . . negative mood negative mood was looked at in two ways. firstly, general negative affect was examined which totalled the scoring for responses of feeling afraid, scared, nervous, jittery, guilty, ashamed, irritable, hostile, upset, distressed. secondly, sadness was examined which included responses of feeling sad, blue, downhearted, alone, lonely. it was hypothesised that that there would be a significant positive effect on those university students’ mood levels that had experienced physical interaction with a dog, compared to the control group who watched a video montage of golden retriever clips. negative affect: with regards to negative affect scores, there was no main effect for condition found. however, a significant interaction between condition and time was found. specifically, the participants in both the dog condition and control condition did experience a significant decrease in general negative affect following their interactions. the participants also reported having lower general negative affect in the post survey than at the point of the pre-survey, regardless of group. this would appear to be in line with the likes of wilson [ ] where there was shown to be a positive impact found on participants from a dog interaction condition, however, a parallel effect was also seen by reading quietly. sadness scores: with regards to sadness scores, the hypothesis was supported as a main effect for condition was found and the participants in the experimental condition reported having lower sadness scores than the control group. thus, it appears that the treatment did have a positive effect on the sadness scores of the university students. there was also a main effect for time and a significant interaction between condition and time. therefore, the participants in this study experienced a decrease in their sadness scores following their exposure to dogs, whether they directly interacted with a dog or simply observed dogs on a video. however, this was significantly greater in the experimental condition than the control. this result supports the previous research findings of orlandi et al. [ ] who compared two groups of patients receiving chemotherapy, with one group serving as a control and the other group assigned to receiving a visit by a therapy dog during the chemotherapy session. the results of their study indicated that depression levels only showed improvement in the dog visit group and not in the control group. . . positive mood positive mood was also looked at in two ways. firstly, general positive affect was examined which totalled the scoring for responses of feeling active, alert, attentive, enthusiastic, excited, inspired, interested, proud, strong, determined. secondly, joviality was examined which included responses of feeling cheerful, happy, joyful, delighted, enthusiastic, excited, lively, energetic. it was hypothesised that that there would be a significant positive effect on those university students’ mood levels that had experienced physical interaction with a dog, compared to the control group. positive affect: with regards to positive affect scores, there was no main effect for condition, however there was a main effect of time as well as a significant interaction between condition and time. therefore, the participants in the experimental condition and control condition experienced a significant increase in their positive affect scores, regardless of which interaction group they were placed. this would appear to support research conducted by bao and schreer [ ] who explored animals , , of overall life satisfaction, negative emotions, and positive emotions. the researchers found that there were no significant differences in measured happiness or overall life satisfaction between those with pets and those without. joviality scores: however, upon analysis of the joviality scores, the hypothesis was supported as a main effect for condition was found and the participants in the experimental condition reported having higher joviality scores than the control group. thus, it appears that the treatment did have a positive effect on the joviality scores of the university students. there was also a main effect for time and a significant interaction between condition and time. therefore, the participants in this study experienced an increase in their joviality scores following their exposure to dogs, whether they directly interacted with a dog or simply observed dogs on a video. however, this was shown to be significantly greater in the experimental condition than the control. this result also supports the previous research findings of orlandi et al. [ ] in addition to el-alayli et al. [ ], nathans-barel et al. [ ] and kaminski et al. [ ] who reported significantly greater positive moods after participants were involved with dog therapy in comparison with control groups. . . gender differences there were no statistically significant results found between genders for any of the variables in this study, apart from the variable of negative affect. there was a statistically significant effect found between group and gender within this variable with males placed in the dog condition reporting a higher initial negative affect score before the intervention took place and experiencing a greater drop after the intervention. this contradicts previous research which suggests that female students benefit more from therapy dog interventions than males [ ]. however, overall there were minimal differences between genders. . . strengths and limitations one strength of this study was its participant size. there were students who participated in this study, ranging between all study years. whilst the majority of students who took part were white (n = ), this study also included multiple other ethnicities including chinese (n = ), asian or asian british—indian (n = ), asian or asian british—pakistani (n = ), other asian (n = ), other (n = ), black british (n = ) and other white background (n = ). however, as the sample of students consisted solely of students studying at the university of warwick, the findings may not be generalised to other universities. that being said, as mentioned above, there was a diverse range of participants in the present study which may help the generalisability. however, as with all research, there are several limitations with the present study. firstly, one of the biggest limitations with this study was that those individuals who took part were largely those who considered themselves as a dog person (n = ) and as such may have experienced the greatest benefit from spending time in the dog interaction condition. people who do not like dogs did not appear to be as likely to sign up to these types of studies and so therefore, the effect sizes may be overestimated. furthermore, the large number of participants who consider themselves a dog person suggests that there could be a self-selection bias. perhaps, one of the biggest limitations to most of these studies is that great portions of the subjects were already shown to either have an interest in or a general like for dogs. numerous previous studies have also used a pet attitude scale to determine if the participants either have a strong liking for dogs or otherwise, a dislike of dogs prior to beginning the study [ ]. this can be a strength as there is a better chance that the study will be more successful if the participants in the study are already proven to be fond of spending time with a dog. regrettably, having a larger number of participants who consider themselves as dog people also decreases the generalisability of the study, given that it is only applicable to the part of the population who either like dogs or are not afraid of them. furthermore, reviews of animal-human relationship studies have also found that typically, these studies rarely display the effects of other pets on humans and generally only account for mainly dogs, and less frequently cats [ ]. secondly, a potential limitation of this study was that it animals , , of was a controlled and not a completely random study. whilst the participants selected which times and days they were available, some people with particular traits may have only been able to make it in the first week while others in the second week and therefore, this might add bias to the current study by not having randomisation. finally, the demographic data collected in this study did not include sexual orientation, social factors or disability which are known to affect mental health [ – ]. . . future research it should be noted that not all people like dogs. some people may have a phobia of dogs, may be allergic to dogs, or may simply just not want to interact with a dog [ ]. therefore, future research could include more of those individuals who rate themselves as “neither” and “cat people” to examine the differences in the effects, as those who do not like dogs may find the experience unpleasant and may instead experience an increase in anxiety levels and negative mood. additionally, future research should also include other house-trained pet types in order to examine the effects on parts of the population who prefer other animals over dogs. the researchers also believe that it may have been more beneficial for the study and sessions to take place during particularly stressful periods of the study year, for instance it would have been preferable for the study to take place at the start of the year when university life is new, particularly for undergraduates, and students are transitioning to university life as this is considered to be a stressful time, and as a result this population is particularly vulnerable to developing or exacerbating depressive symptoms [ ]. other stressful periods of time could be during exam periods, or even for dogs to be present while students complete assignments. this is something to consider with regards to future research. however, this study took place just after the end of year exams while students were waiting for their results which might also considered to be a stressful point of their year. the directions for future research could include the research taking place from the beginning of the year through to the end at regular intervals to compare times of elevated stress, especially for first-year students, and should go beyond the temporary relief offered by one-off sessions and incorporate longitudinal measures into the design to examine if there is a long-term benefit of interacting with a dog for students. do the effects dissipate over time? how short-lived are the effects? future studies could incorporate several measurement points. moreover, is there an association between university students’ productivity throughout the year and interacting with a pet regularly? whilst there is research to suggest an association between reduced stress, anxiety and depression and dog therapy sessions, it is not yet known whether this reduction has an impact on university students’ productivity and academic success. might the quality and amount of work accomplished be higher due to the psychological benefits provided by owning a pet, or could they in fact be lower as a result of added responsibility and distractions? generally, with all populations, there are limited longitudinal studies that have examined the impact of pets, therefore to investigate what exactly are the lasting impacts that dogs have on humans, it would be very beneficial to utilize such designs [ ]. it is also important to consider cultural differences with regards to using pets in therapy sessions, as not all cultures feel the same way about domestic pets, such as dogs. not everyone shares the same perception or love for animals or see them as a positive influence on their life [ ]. it is therefore vital to bear in mind that the concept of animals as a therapeutic intervention is not universally accepted as some people might have cultural or religious reasons for why they do not want to interact with animals [ ]. this could open avenues for future research to ensure that animal interventions are culturally suitable and beneficial, as not much is known about how cultural or religious views impact therapeutic outcomes in animal interventions [ ]. though researchers and animal volunteers should mitigate such risks by asking beforehand whether the potential individual is happy to interact with the animal in question. equally, it is important to bear in mind that these interventions involve living, breathing animals and there are risks to the participating therapy dogs themselves [ ]. therefore, it is mandatory that those in charge of organising and running such interventions should ensure the therapy dogs’ health, safety, welfare, and that its daily routine is maintained. animals , , of with this is mind and given that the number of animal interaction studies are increasing, future research should consider investigating the impact such interventions on the therapy dogs themselves as at present, the research in this area is lacking [ ]). there are only a few animal intervention studies that incorporated measures to investigate how participating therapy animals are affected by these studies [ ]. therefore, in order to be considered humane and effective methods of treatment, animal interventions should be beneficial to both the participating therapy animals and the potential clients [ ] and researchers should investigate the effects of these interventions on both parties given the current lack of clarity. future research should also consider exploring which of the specific aspects of university dog sessions lead to better lasting positive effects, for instance, explore what the optimal number of sessions is for long-term benefits or what the optimal length of time is for students to remain engaged with the session. in addition to using self-report measures, future research could also include the use of physiological measures, such as heart rate, galvanic skin response, cortisol levels and blood pressure to assess changes. given that students’ levels of psychological distress have been reported to rise significantly upon initially starting university and do not return to their pre-university levels throughout their time in university [ , ], it is of high importance that students have accessible interventions to reduce anxiety and depression. . conclusions to the best of the researcher ’s knowledge, this present study helps to fill a research gap and provides further support that allowing students to interact with dogs on campus has positive psychological benefits to students. whilst no significant results were found between the groups for negative or positive affect, the researchers argue that the items that comprised the sadness and joviality scales were more relevant to mood and feelings, while affect is more the experience of their emotions. this would however appear to be in line with previous research that has suggested that animals do not necessarily even need to be present and simply images alone of pets can improve psychological wellbeing [ ]. this study found that there were positive effects on anxiety, joviality and sadness in the case of the control variable as with the experimental, though the benefits of the experimental condition were significantly greater, and there were positive effects on general positive affect and general negative affect regardless of condition. ultimately, the use of dogs whether they have been trained specifically for therapy or are general house-trained dogs, or even just the use of videos, can be a highly beneficial tool for universities to implement to help reduce depression and anxiety in students. the positive benefits associated with students being allowed to interact with dogs in university appears to be a suitable, relatively low-cost and effective way to enhance and sustain student psychological well-being. to conclude, the results of this study indicate that interacting with a pet dog considerably reduces anxiety and feelings of sadness and improves happiness scores. there are several limitations with the current study which leave a gap for future studies to fill. further controlled studies are required for confirmation and to accurately define the population who will receive the greatest benefit from such treatments, as well as the optimum duration. it is hoped that this study will help to inform future best practices in designing student dog interventions, which will in turn, facilitate improved psychological well-being in university students. funding: this research received no external funding. acknowledgments: i would like to thank my 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[crossref] . melson, g.f.; fine, a.h. animals in the lives of children. in handbook on animal-assisted therapy: theoretical habri central briefs: the use of dogs in hospital settings foundations and guidelines for practice, rd ed.; fine, a.h., ed.; elsevier: san diego, ca, usa, ; pp. – . . mccullough, a.; ruehrdanz, a.; jenkins, m.; ganzert, r. the importance of assessing behavioral and physiological stress in therapy dogs. austin j. vet. sci. anim. husb. , , . . ng, z.; albright, j.; fine, a.h.; peralta, j. our ethical and moral responsibility: ensuring the welfare of therapy animals. in handbook on animal-assisted therapy: foundations and guidelines for animal-assisted interventions, th ed.; fine, a.h., ed.; elsevier: san diego, ca, usa, ; pp. – . © by the author. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . / x http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	background 	the present study 	methods 	ethical considerations 	participants 	measures 	procedure 	results 	preliminary analyses 	main analyses 	stai anxiety scores 	panas-x negative affect scores 	panas-x sadness scores 	panas-x general positive affect scores 	panas-x joviality scores 	exploring gender 	stai anxiety 	negative affect scores 	sadness scores 	positive affect scores 	joviality scores 	discussion 	anxiety 	negative mood 	positive mood 	gender differences 	strengths and limitations 	future research 	conclusions 	references wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ leb.qxd psychiatric services ♦ http://ps.psychiatryonline.org ♦ september vol. no. national interest in reducing oreliminating the use of seclu-sion and restraint was ignited by the hartford courant’s pulitzer prize–winning series on deaths associated with restraint ( ) and was fueled by several important ef- forts, including the children’s health act of , the substance abuse and mental health services administra- tion’s (samhsa’s) national call to ac- tion: eliminating the use of seclusion and restraint, the national associa- tion of state mental health program directors’ (nasmhpd’s) national executive training institutes and curriculum to reduce seclusion and restraint, and successful state seclu- sion and restraint reduction initiatives ( – ). massachusetts has an established history of stringent statutory and reg- ulatory requirements that govern the use of seclusion and restraint in psy- chiatric facilities. in , the state’s department of mental health (dmh) issued regulations limiting the use of seclusion and restraint among children. an impact analysis at one facility concluded that the new requirements had been successful in reducing rates of restraint ( ). in , dmh used its statutory role again to change seclusion and re- straint practices in psychiatric facili- ties that serve children and adoles- cents by developing a statewide initia- tive to reduce or eliminate the use of seclusion and restraint among chil- dren and adolescents ( ). this effort was undertaken because rates of seclusion and restraint in child and adolescent psychiatric facilities were the economic cost of using restraint and the value added by restraint reduction or elimination jjaanniiccee lleebbeell,, eedd..dd.. rroobbeerrtt ggoollddsstteeiinn,, pphh..dd.. dr. lebel is affiliated with the child and adolescent division of the massachusetts de- partment of mental health, staniford street, boston, massachusetts (e-mail, janice.lebel@dmh.state.ma.us). when this work was done, dr. goldstein was with the clinical and professional services division of the department. he is currently affiliated with synergy consulting associates in stow, massachusetts. an earlier version of this pa- per was presented at the annual conference of the national association of state mental health program directors national research institute, held february to , , in arlington, virginia, and at the massachusetts department of mental health restraint re- duction/elimination grand rounds, held march , , in natick, massachusetts. this article is part of a special section on the use of seclusion and restraint in psychiatric treat- ment settings. objective: the purpose of this study was to calculate the economic cost of using restraint on one adolescent inpatient service and to examine the effect of an initiative to reduce or eliminate the use of restraint af- ter it was implemented. methods: a detailed process-task analysis of mechanical, physical, and medication-based restraint was conducted in accordance with state and federal restraint requirements. facility re- straint data were collected, verified, and analyzed. a model was devel- oped to determine the cost and duration of an average episode for each type of restraint. staff time allocated to restraint activities and med- ication costs were computed. calculation of the cost of restraint was re- stricted to staff and medication costs. aggregate costs of restraint use and staff-related costs for one full year before the restraint reduction initiative (fy ) and one full year after the initiative (fy ) were calculated. outcome, discharge, and recidivism data were analyzed. results: a comparison of the fy data with the fy data showed that the adolescent inpatient service’s aggregate use of re- straint decreased from , episodes to episodes ( percent), which was associated with a reduction in the cost of restraint from $ , , to $ , (a percent reduction). in addition, sick time, staff turnover and replacement costs, workers’ compensation, injuries to adolescents and staff, and recidivism decreased. adolescent global assessment of functioning scores at discharge significantly improved. conclusions: implementation of a restraint reduction initiative was as- sociated with a reduction in the use of restraint, staff time devoted to restraint, and staff-related costs. this shift appears to have contributed to better outcomes for adolescents, fewer injuries to adolescents and staff, and lower staff turnover. the initiative may have enhanced ado- lescent treatment and work conditions for staff. (psychiatric services : – , ) ssppeecciiaall sseeccttiioonn oonn sseecclluussiioonn aanndd rreessttrraaiinntt leb.qxd / / : am page five to six times higher than in adult facilities. the initiative began in fiscal year (fy) and was fully implemented in fy . it included strategic plan- ning, training, and technical assis- tance from dmh; quarterly grand rounds; annual provider forums; monthly facility-specific consultation; data monitoring and comparative re- ports; and continuous review and planning. no new fiscal resources were provided. when statewide child and adoles- cent seclusion and restraint data for fy and fy were com- pared, a decrease in the number of episodes of seclusion and restraint ( percent, from , to , ) and in the number of hours of seclusion and restraint ( percent, from , to , ) was demonstrated. reduction was evident, but questions resulted: were treatment outcomes or inpatient services affected? what did seclusion and restraint cost? what did reducing seclusion and restraint save? what else changed? no research on the explicit costs as- sociated with the use of seclusion and restraint in psychiatric inpatient set- tings was found in the literature. phillips and colleagues ( ) considered cost implications of reducing the use of physical restraint in nursing homes in seven states. after examining the major component of nursing home cost—staff time—and how time was allocated with residents who were re- strained and those who were not, these authors concluded that “residents free of restraints are less costly to care for than restrained residents.” fraser and associates ( ) considered the cost of patient-initiated elimination of re- straint in intensive care settings and noted that the use of restraint repre- sented a “significant consumption of health care resources.” the issue of cost in psychiatric in- patient settings has been researched by others. however, the focus has been on the impact of violence, such as the cost of patient assault ( ), the cost of staff injuries from inpatient vi- olence ( , ), and the cost of imple- menting total quality management to reduce violence ( ). although vio- lence and resulting patient and staff injuries often involved the use of seclusion and restraint ( , , ), none of the analyses included the cost of using seclusion and restraint or the economic impact if seclusion and re- straint were reduced or eliminated. however, the literature articulated the more recent determination that the use of seclusion and restraint was not therapeutic and reflected a failure in the treatment process ( , ). this pronouncement was particularly meaningful when measured against the federal statute that defined the purpose of psychiatric inpatient serv- ice as providing physician-directed diagnostic services and active individ- ualized treatment that must be rea- sonably expected to improve the per- son’s condition ( ). the use of seclu- sion and restraint conflicted with the statute, the goals of psychiatric inpa- tient service, and the advancement of standards of care. moreover, children and adolescents with trauma histories who experienced seclusion and re- straint perceived the hospital as a source of new trauma, not treatment ( – ). hippocrates’ dictum to physicians—“to help, or at least to do no harm” ( )—underscored the con- tradictory nature of the use of seclu- sion and restraint in contemporary psychiatric practice. we developed a model to analyze the cost of restraint, to answer the question, what else did the initiative achieve besides reducing restraint episodes and hours? our purpose was to retrospectively calculate the cost of restraint and the impact of the initia- tive on one inpatient facility by com- paring the use of restraint and re- straint-related costs for one full year before the initiative was implement- ed (fy ) with those one full year after (fy ). a -bed, co-ed, adolescent contin- uing care inpatient service for youths aged to years was selected for the study. the service is located at westborough state hospital in west- borough, massachusetts. the service is the only privatized long-term inpa- tient resource for adolescents who re- quire extended postacute inpatient care to stabilize treatment-refractory behavior. all adolescents have experi- enced previous hospitalizations, and their diagnostic profiles are complex. the most frequently occurring admit- ting diagnoses are posttraumatic stress disorder, bipolar disorder, con- duct disorder, major depression, and psychotic disorders. before admission, adolescents are assessed by trained child and adoles- cent psychiatrists. admission is rec- ommended only if clinical criteria es- tablished for this service are satisfied. the admission criteria have not changed since the service was created in . of patients served in fy , ( percent) were caucasian, ( percent) were african american, and six ( percent) were hispanic. in fy , of patients, ( per- cent) were caucasian, ten ( per- cent) were hispanic, and nine ( percent) were african american. a portion of the population was not racially identified in fy and fy . no patient-identifying informa- tion was reviewed or used. the data were collected from july to feb- ruary , and prior consent was ob- tained from dmh’s institutional re- view board. methods to analyze the cost of restraint, the principles of time-motion analysis were applied ( , ). time-motion psychiatric services ♦ http://ps.psychiatryonline.org ♦ september vol. no. the focus of studies of cost in psychiatric research settings has been on the impact of violence; none of the analyses included the cost of using seclusion and restraint. leb.qxd / / : am page analysis pioneers frederick taylor and frank gilbreth endorsed study- ing an activity process and analyzing each task in the process to improve outcomes. thus we conducted a process-task analysis for physical, me- chanical, medication-based, and medication-combination restraint. seclusion was not used at the service and therefore was not included in the analysis. process-task analysis a process-task analysis was conduct- ed by examining statutory and regula- tory restraint requirements of dmh, accreditation standards of the joint commission on accreditation of healthcare organizations, and certi- fication requirements of the centers for medicare and medicaid services ( – , ). this analysis produced a template in which each task of the re- straint process was identified. next, several meetings were held with service staff. using the template, staff further delineated restraint tasks, the staff disciplines involved, and the number of staff and time re- quired to perform each task (table ). a detailed sequence of restraint activ- ities resulted. the refined restraint process-task analysis indicated three discrete phas- es: prerestraint (initial crisis manage- ment); restraint application, monitor- ing, and release; and postrestraint ac- tivities, as shown in table . the number of tasks, staff, and time re- mained consistent across restraint types in the first and third phases but not in the second phase. this varia- tion affected the cost of each type of restraint. cost estimation to fully evaluate the cost of restraint and the impact of reducing restraint, a range of costs were considered. de- termining which costs to include in the cost calculation for a restraint episode proved difficult. costs explic- itly incurred during restraint were clear (staff time and medication). costs resulting from restraint activi- ty—that is, injuries, lost staff time, and turnover—were calculated but were not factored into the cost calcu- lation for each type of episode. prerestraint episode costs, such as escalation monitoring and deescala- tion interventions, were considered, but we were unable to quantify them because of variations in staff tech- niques and the inability to define standardized procedures. staff stated that an important part of their work is good milieu management—anticipat- ing and intervening early to prevent circumstances from escalating to cri- sis proportions. this approach was used by staff “all the time” as part of their job rather than being a discrete task. similarly, postrestraint episode costs, such as milieu instability, conta- gion, damage to the treatment process, and the traumatic effect of being restrained, could not be ade- quately measured and were not in- cluded ( ). to generate conservative cost esti- mates for the use of restraint, the fol- lowing criteria were used: the mini- mum number of staff needed per task, the minimum amount of staff time needed per task, and the low end of the staff salary range per disci- pline. the medication-based and medication-combination restraint calculations were based on these cri- teria and included a fixed medication cost estimate according to fy psychiatric services ♦ http://ps.psychiatryonline.org ♦ september vol. no. ttaabbllee total staff hours by discipline per episode of restraint in an adolescent inpatient service, by type of restraint mechanical or physical with type of staff medication physical mechanical medication mental heath counselor . . . . nursing . . . . psychiatrist . . . . social worker . . . . psychologist . . . . program director . . . . secretary . . . . human rights officer . . . . total . . . . ttaabbllee costs of an average-duration episode of restraint for various phases of restraint in an adolescent inpatient service, by type of restraint intervention mechanical or physical with type of staff medication physical mechanical medication phase (prerestraint) number of tasks number of staff disciplines staff time (hours) . . . . cost $ . $ . $ . $ . phase (restraint application, monitoring, and release) number of tasks number of staff disciplines staff time (hours) . . . . medication cost . — — . cost $ . $ . $ . $ . phase (postrestraint activities) number of tasks number of staff disciplines staff time (hours) . . . . cost $ . $ . $ . $ . total staff time . . . . total cost per episode $ . $ . $ . $ . leb.qxd / / : am page costs of the service’s most frequently prescribed medication-based re- straints: haloperidol ( mg/ml, $ . per vial), lorazepam ( mg/ml, $ . per vial), and benztropine ( mg/ml, $ . per vial). data collection restraint data were reported to dmh each month by the inpatient service and by westborough state hospital. these reports were submit- ted on standard dmh forms with in- structions on the restraint data, initia- tion and termination times, staff sig- natures, and other staff documenta- tion to be reported and then cross- referenced to verify the service’s data. the inpatient service and the hos- pital provided restraint data (episodes and hours) for each type of restraint for one full year preinitiative (fy ) and one full year postinitiative (fy ). there were , episodes, or , hours, in fy and episodes, or hours, in fy . restraint episodes varied by type and duration, which determined the number of tasks, staff, and staff time. the service’s average episode duration for each restraint type for fy and fy was calculated and applied in phase (table ). the exception was medication-based re- straint, for which no duration factor was applied. the inpatient service also provided staff, salary, and staff-related data. the service was state-contracted and level-funded from fy to fy . consequently, salary costs and ranges remained constant. there was no change in staffing pattern, envi- ronment of care, benefits, or other staff-related factors that could have contributed to a change in the work or environmental conditions. cost calculations were performed for restraint, medication, staff, and staff-related costs in fy and fy . restraint and nonrestraint time also was calculated. using this ap- proach, we examined the staff time allocated to restraint as a subset of the total staff time available in fy and fy (table ). in addition, global assessment of functioning (gaf) scores assigned at admission and discharge for each adolescent by the treating psychia- trists for the pre- and poststudy peri- ods were obtained from the service and the hospital. the data were com- pared by using unpaired two-tailed t tests of statistical significance. data from the dmh performance- based contracting (pbc) system were also used. since fy , the inpa- tient service has analyzed and report- ed semiannually on performance in- dicators, including adolescent partici- pation, family and collateral involve- ment, outcomes, postdischarge fol- low-up, and recidivism. results restraint cost restraint costs varied by type and phase (table ). the amount of time required for one average episode of any type of restraint was considerable, particularly in the third phase. costs were driven by the number of tasks and staff, staff time, and the average episode dura- tion. a compilation of these re- straint costs yielded an aggregate restraint cost. a comparison of ag- gregate restraint costs in fy and fy indicated a reduction in cost from $ , , to $ , (a percent reduction) because of the decrease in episodes from , to (a percent reduction). impact on adolescents the admission and discharge gaf scores for fy and fy were analyzed and compared. a sig- nificantly more impaired population was admitted in fy than in fy ( . ± . and . ± . , respectively; t= . , df= , p<. ). despite the increased functional im- pairment of fy admissions, discharge gaf scores from pre- to postinitiative nevertheless increased significantly ( . ± . compared with . ± . ; t= . , df= , p<. ). aggregate data from the pbc sys- tem supported this finding. more adolescents were discharged with higher gaf scores in fy ( percent, or of discharges) than in fy ( percent, or of discharges). the pbc data also revealed de- creased recidivism. at six months postdischarge, percent fewer ado- lescents were rehospitalized in fy (two of adolescents) than in fy (three of adolescents). similarly, at months postdischarge, psychiatric services ♦ http://ps.psychiatryonline.org ♦ september vol. no. ttaabbllee mean duration of restraint episodes in an adolescent continuing care inpatient service, by type of restraint fiscal year fiscal year type of restraint mean sd mean sd medication only — — — — physical — . . mechanical . . . . mechanical or physical with medication . . . . ttaabbllee staff time spent in restraint and nonrestraint activities in an adolescent continuing care inpatient service fiscal year fiscal year variable n % n % total staff hours available , , staff hours spent in restraint activities , , staff hours spent in nonrestraint activities , , leb.qxd / / : am page percent fewer adolescents were rehospitalized in fy (five of adolescents) than in fy (three of adolescents). other positive adolescent outcomes were suggested when fy and fy data were compared. aggregate injury data indicated a percent re- duction in restraint-related injuries (from to six injuries). no major in- juries were reported. in addition, the average number of restraints for the cohort of adolescents who were re- strained the most decreased per- cent (from to seven episodes). the average length of stay for this group also decreased by percent (from to days). impact on staff the initiative was associated with a shift in staff focus. the reduction in the use of restraint decreased the amount of time that staff devoted to restraint activities. in fy , staff spent percent of their work time ( , hours) engaged in restraint- related tasks. in fy , staff spent four percent of their time in such ac- tivities ( , hours). the initiative was associated with a percent redi- rection of staff time ( , hours) into nonrestraint activities (table ). increased staff availability may have contributed to greater adolescent participation in programming (a percent increase, from to ado- lescents), family and collateral partic- ipation in treatment planning ( per- cent, from to adolescents), and postdischarge follow-up ( percent, from to adolescents). the change in focus may have also contributed to positive staffing out- comes. a comparison of fy and fy data indicated that staff turnover decreased by percent (from to nine staff changes). the use of sick time decreased by per- cent (from , to , days). in- juries to staff decreased modestly by seven percent (from to in- juries). however, the severity of staff injuries lessened, resulting in a percent reduction in the number of workdays missed because of restraint- related injury (from to five days). the use of replacement staff de- creased by percent (from to shifts). the cost to fill shifts vacated because restraint-related injury de- creased by percent (from $ , to $ , ). less demand for replace- ment staff reduced the need to adver- tise vacant positions, resulting in low- er advertising costs ( percent, from $ , to $ , ). a comparison of fy and fy data indicated a reduction in workers’ compensation costs. the number of workers’ compensation claims decreased by percent (from to claims). however, the amount of compensation paid decreased by percent (from $ , to $ ), and the amount of medical costs paid decreased by percent (from $ , to $ ). decreased staff-related costs were not attributable to staff reduction or change in staffing pattern. preventing the use of restraint required staff to be in the milieu, anticipate crises, and be available to adolescents before a prob- lem erupted. to operate a more proac- tive program, staff resources became more effective but were not reduced. impact on the facility the preinitiative cost of restraint was considerable ($ , , ) because of the high use of restraint. the cost was staggering when measured against the service’s annual budget ($ , , ), representing a substantial amount of staff time engaged in nontherapeutic activities, which is contrary to the pur- pose of care. no new fiscal resources were pro- vided to massachusetts child and ado- lescent facilities through the initia- tive. however, the inpatient service modified existing resources to sup- port the effort. for example, staff training was refocused to emphasize building relationships, understanding each adolescent’s needs, precrisis in- tervention planning, and deescalation skill development. alternative inter- ventions were created by using exist- ing program resources. the role of occupational therapy was expanded. sensory modulation and integration as well as pet therapy interventions were integrated into crisis prevention plans and activities for adolescents to practice and use as needed. the serv- ice also changed its debriefing prac- tice and added administrative de- briefing after each restraint. although additional staff supervision was not used, the focus shifted to a preven- tion orientation and how to intervene at the earliest signs of distress. one area of possible increased cost was physical plant repair. the explicit repair cost was not quantifiable and was managed within the operating budget. however, the number of inci- dents of property destruction in- creased by percent (from inci- dents in fy to incidents in fy ), and the number of episodes of purposeful property de- struction by adolescents increased by percent (from to episodes) during this period. as staff developed greater skill in using alternatives to restraint, they also developed toler- ance for minor environmental dam- age. rather than restraining adoles- cents, staff later enlisted their help with repairing and making restitution to the inpatient community. discussion and conclusions several limitations to this study re- strict interpretation and application of the findings. the nonrandomized, nonexperimental, pre-post study de- sign raises the possibility that the re- sults were affected by confounding or extraneous variables or secular trends. generalizability of the study’s findings to other settings is limited by the small sample, the estimated time per restraint activity, and the limited staffing and outcome data. the lack of comparative data was another limitation. early efforts to select an adolescent-serving acute care hospital to compare with the in- patient service in this study suggest- ed that little comparable information of this type was routinely or uni- formly collected or available at other facilities. questions remain that further chal- lenge the interpretation of this ef- fort—for example, are statistically sig- nificant findings clinically significant? adolescents’ postinitiative discharge functional assessment (gaf) scores were significantly higher and suggest- ed true clinical improvement. how- ever, the most important arbiter of clinical significance is the perspective of the adolescents. unfortunately, their voice was not a part of the study, which is a limitation of this effort and psychiatric services ♦ http://ps.psychiatryonline.org ♦ september vol. no. leb.qxd / / : am page of all service-related research that at- tempts to interpret or evaluate mean- ing absent the essential perspective of those we serve. the intent of the initiative was to reduce or eliminate the use of re- straint. in addition to reduction in re- straint, other positive changes result- ed that could not be attributed to al- teration of environmental, fiscal, or administrative practices. the number of injuries to adolescents and staff was reduced, and sick time, workers’ compensation, and replacement costs decreased substantially. recidivism also decreased, and adolescent func- tioning measured at discharge signifi- cantly improved. we expected that the decrease in the number of restraints would drive the reduction in restraint costs. how- ever, the improved adolescent out- comes, positive impact on staff, and decreased staff-related costs were not anticipated. calculating the econom- ics of the restraint process and seque- lae of restraint reduction also illumi- nated the negative consequences of restraint: adverse treatment and staffing effects and redirected staff time. the value-added component of restraint reduction or elimination was the improvement in these dimensions and a return to the mission of inpa- tient care: treatment. seclusion and restraint are high- risk, violent interventions whose im- pact extends beyond the immediate task of attempting to manage a volatile situation. additional study can occur only if leaders from federal agencies, state mental health authori- ties, and psychiatric facilities contin- ue to work toward elimination of seclusion and restraint. national ef- forts implemented by samhsa ad- ministrator charles curie and by nasmhpd’s leadership, robert glover and kevin huckshorn, are critical to advancing this direction. additional study is needed to assess the impact of reduction and elimina- tion initiatives, particularly the long- term staffing and therapeutic effects, the fiscal implications, and the rela- tionship between redirected staff time and restraint reduction. ♦ references . weiss em: deadly restraint: a 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politics of naming and risk of transformation in building partner- ships for change. perspectives in psychi- atric care : – , psychiatric services ♦ http://ps.psychiatryonline.org ♦ september vol. no. leb.qxd / / : am page << /ascii encodepages false /allowtransparency false /autopositionepsfiles true /autorotatepages /none /binding /left /calgrayprofile (gray gamma . ) /calrgbprofile () /calcmykprofile (u.s. sheetfed uncoated v ) /srgbprofile (srgb iec - . ) /cannotembedfontpolicy /error /compatibilitylevel . /compressobjects /off /compresspages true /convertimagestoindexed true /passthroughjpegimages true /createjdffile false /createjobticket true /defaultrenderingintent /default /detectblends true /colorconversionstrategy /leavecolorunchanged /dothumbnails false /embedallfonts true /embedjoboptions true /dscreportinglevel /syntheticboldness . /emitdscwarnings false /endpage - /imagememory /lockdistillerparams true /maxsubsetpct /optimize false /opm /parsedsccomments true 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/description << /deu <feff e e e c c e e c d e e fc f d d b f d c e c e e d f b d e e e e a c c e c e e fc b f d c e fc e e f e f d e f d a d f e c e b f c e e e f d f e e a d c c e f e f d d b f d c e d f b d e e e e d f d e e d f b d e b f e e e d f f d d e e f f e e e> /fra <feff f f e d e e c c f e f d e e c e f d f d f e f e e c f f e f d e e f e f d e e f e e f d f e e f e e e f e f c c e f e f d e f e f d e f d c f e c a c c c f e c f c f f d e e f c f e e f c e e> /jpn <feff f d e e e ec dd fc c a f f c b f f e f f b e d a c af b f c f c db b a b f a e f d e e e f f c b f f e fc b ac a c c f f c f f f a e ee d a d e > /ptb <feff c a f e e f f d e f d c f f f f e f d f d f f d e f e d e f f f f e fa f e f e f d e f d e f f f d f f d e f d f e f d f d f f d c f e c f f e f f f e f f d e f f d f f d f f c e f f e> /dan <feff e c c e c f f d f f c c f d f b e f d f b d e c f f c e e e f e f d e c b c e b e f c e c f c e e f d f c d f b d e c f f c f d c e a c e e e c f e d f b d e 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f b d e c b e b e e f b e f f e d f b d e b e e e d f f e f e e> /sve <feff e e e e e e e c c e e e e e c c f f d f d d e f b d f b d e f d f c a e e e e f e e f d e f b e e e c c e d e f d f e f d b d f b d e f d f c a f d e e e e f b e f f e d f b d e e b e f e d f f e c c e e> /enu <feff d d f b e f e d f f e c c e f f e e d d f b e f d e > >> >> setdistillerparams << /hwresolution [ ] /pagesize [ . . ] >> setpagedevice defining the optimal method for measuring baseline metabolic tumour volume in diffuse large b cell lymphoma original article defining the optimal method for measuring baseline metabolic tumour volume in diffuse large b cell lymphoma hajira ilyas & n. george mikhaeel & joel t. dunn & fareen rahman & henrik møller & daniel smith & sally f. barrington received: august /accepted: january /published online: february # the author(s) . this article is an open access publication abstract purpose metabolic tumour volume (mtv) is a promising prognostic indicator in diffuse large b cell lymphoma (dlbcl). optimal thresholds to divide patients into ‘low’ versus ‘high’ mtv groups depend on clinical characteristics and the measure- ment method. the aim of this study was to compare in consecutive unselected patients with dlbcl, different software algorithms and published methods of mtv measurement using fdg pet. method pretreatment mtv was measured on patients treated at guy's and st thomas’ hospital. we compared methods: suv ≥ . , suv ≥ % of maximum suv and suv ≥ mean liver uptake (percist) and compared software programs for measuring suv ≥ . ; in-house ‘pettra’ software and hermes commercial software. results there was strong correlation between mtv using the methods, although derived thresholds were very different for the % method. optimal cut-offs for predicting pfs ranged from – cm . all methods predicted survival with similar accuracy. y-pfs was – % vs. – % and y-os was – % vs. – % for the low- and high-mtv groups, respec- tively. interobserver variation in patients showed excellent agreement, though variation was lowest using the suv ≥ . method. the % method was the most complex and took the longest time. conclusion all methods predicted pfs and os with similar accuracy, but the derived cut-off separating good from poor prognosis varied markedly depending on the method. the choice of the optimal method should rely primarily on prognostic value, but for clinical use needs to take account of ease of use and reproducibility. in this study, all methods predicted prognosis, but suv ≥ . had the best inter-observer agreement and was easiest to apply. keywords positron-emission tomography . lymphoma . diagnosis . imaging introduction diffuse large b cell lymphoma (dlbcl) is the commonest subtype of lymphoma, representing % of lymphoid malignancies [ ]. there has been a significant improvement in cure rates in recent years, with the addition of rituximab to cyclophosphamide, adriamycin, vincristine, and prednisone (chop) chemotherapy. however, a significant proportion of patients will progress or relapse after r-chop [ , ] and long- term cure rates are only about % [ ]. whilst first line treat- ment has become more successful, salvage therapy after up- front rituximab has become less effective [ , ]. it is important therefore to be able to reliably assess both pretreatment risk and identify patients at high risk of progression or relapse early to tailor treatment and test alternative approaches [ ]. the international prognostic index (ipi) is currently used for estimating pretreatment risk, despite the fact that ipi often does not reliably predict individual patient outcome because dlbcl tends to behave heterogeneously [ ]. other factors that can predict prognosis, such as cell of origin or specific translocations, e.g. double-hit lymphoma (myc and bcl- * sally f. barrington sally.barrington@kcl.ac.uk department of nuclear medicine, guy’s and st thomas’ nhs foundation trust, london, uk department of clinical oncology, guy’s and st thomas’ nhs foundation trust, london, uk kings college london and guy’s and st thomas’ pet centre, school of biomedical engineering and imaging sciences, king’s college london, king’s health partners, london, uk department of cancer epidemiology and population health, king’s college london, king’s health partners, london, uk european journal of nuclear medicine and molecular imaging ( ) : – https://doi.org/ . /s - - -z http://crossmark.crossref.org/dialog/?doi= . /s - - -z&domain=pdf http://orcid.org/ - - - mailto:sally.barrington@kcl.ac.uk translocations), have been identified but have not resulted in therapeutic advances as yet [ , ]. the response to treatment in dlbcl has great prognostic value. complete remission at the end of chemotherapy is as- sociated with a high rate of progression-free survival (pfs) [ ], but this information is obtained too late for choosing treatment. positron emission tomography (pet) has been found to be useful in early monitoring of treatment for aggres- sive lymphomas [ ]. in hodgkin lymphoma, published multicentre trials support the use of early ‘interim’ pet for response-adapted treatment [ , ]. however, in dlbcl, whilst initial reports suggested interim petcould reliably pre- dict chemoresistance to chop [ , ], later reports sug- gested the introduction of rituximab might affect the interpre- tation of bpositive^ interim pet scans [ , , ]. currently, the pfs of patients with a positive interim scan treated with r- chop is around % at – years [ , ]. attempts to stan- dardise pet reporting [ , ] and improve the positive pre- dictive value of interim pet using semi-quantitative ap- proaches [ ] have not been sufficiently improved to enable interim pet to discriminate a group with poor prognosis in whom a change of treatment would be warranted [ , ]. baseline imaging characteristics can also predict outcome [ ], including tumour burden [ ]. the mint study demon- strated a linear relationship between maximum tumour dimen- sion and prognosis in patients treated with r-chop [ ]. more recently metabolic tumour volume (mtv) has been identified as a promising baseline prognostic factor [ , , ] that is superior to size-defined bulk [ , ]. the high contrast afforded by f fluorodeoxyglucose (fdg) pet imaging may overcome some of the interobserver variability reported when segmenting tumour regions using computed tomogra- phy (ct) and it appears that pet is closer to the ‘ground truth’ when a tumour is delineated using pet compared to ct in solid tumours [ , ]. the use of pet automatic delineation methods may also reduce interobserver variability [ ]. several methods have been proposed to measure mtvand applied in selected patients with large cell lymphoma. this has resulted in different cut-offs for mtv that separate good from poor prognostic groups [ – ]. we recently reported our experience measuring mtv using software developed in- house. we combined baseline mtv with early response as- sessment using deauville criteria in consecutive unselected patients with dlbcl treated with r-chop at a single insti- tution [ ] using quality assurance methods developed for clinical trials [ ]. using this approach, a third of patients were found to have high baseline mtv with incomplete early metabolic response after cycles of r-chop and y-pfs of only % [ ]. validation of these data will require large patient numbers and involvement of international groups. standardisation of the methodology for mtv is crucial for this endeavour, as previously occurred with the assessment of pet response using the deauville criteria [ , ]. methods also need to be available using commercial software and be robust and easy to use in daily practice. the aim of this study therefore was to: ) compare the reproducibility of measuring total mtv using in-house software (as previously reported) [ ] and commercially developed software (hermes medical solutions, sweden) ) compare various published ways to perform mtv segmentation ) assess inter-observer variability in mtv measurement and ease of use of different methods ) compare accuracy of the various mtv segmentation methods to predict pfs and overall survival (os) in dlbcl [ , , , ] patients and methods consecutive patients with dlbcl treated with r-chop at guy’s and st thomas’ nhs trust from to were included [ ]. baseline pet/ctscans were acquired after a - h fast and min after administration of fdg produced in an on-site cyclotron. images were acquired from the base of the skull to upper thighs using dst or vct scanners (general electric, waukesha, wi, usa) for minutes per bed position with separate head and neck views, if required. ct parameters were kv; ma; . -s rotation time; . pitch. images were reconstructed using iterative reconstruction and displayed using hybrid viewer (hermes medical solutions, sweden) scaled to a fixed standardised uptake value (suv) of and using a standard colour table. mtv was measured on the baseline pet scan by one ob- server (hi) using: . in-house software named ‘pet therapy response assessor’ (pettra) developed as part of a phd project to segment a tumour using counts with suv ≥ . (pettra . ) as previously reported [ ] . commercial software ‘hermes hybrid d’ in develop- ment by hermes medical to segment tumours using suv ≥ . (hermes . ) . volume with counts ≥ % of the maximum suv within individual tumour regions (hermes %) by applying a thresholding tool available within the hermes hybrid d application [ ] . uptake higher than the mean suv in a -cm cuboid volume of interest (voi) in the right lobe of the liver as recommended by the authors of percist (hermes percist) [ ] eur j nucl med mol imaging ( ) : – the first three methods involved automatic segmentation of areas of tumour selected by the operator using a single-click for each region. in the percist method, the operator placed a -cm voi in the right lobe of the liver. awizard named ‘tumour finder’ then automatically segmented all volumes within the image with uptake ≥ . x mean suv + standard deviations (sd) in the liver voi. we also tested the exploratory threshold of x mean suv + sd suggested [ ], but found it to be too sen- sitive, selecting multiple areas that did not contain tumour (data not shown). if the liver showed extensive lymphoma involvement, a × × -cm voi was placed in the descend- ing thoracic aorta and used as the reference region instead [ ]. the operator then modified volumes as required—manual- ly removing regions that contained only physiological fdg uptake, e.g. brain or bladder, or by using editing tools to re- move physiological uptake adjacent to the tumour that had been automatically included in the volume, e.g. myocardial or urinary tract and bowel uptake. individual tumour volumes, where more than one volume was present, were summed to calculate the total mtv. observers were blinded to patient outcome. interobserver variation to analyse interobserver variation, a second more experienced observer (sfb) measured mtv independently from the first observer (hi) using all methods available in the hermes hybrid d application in a subset of patients. five scans were randomly selected from each decile of mtv (using hermes . ) to give a representative selection of high and low values. time to complete the measurement of mtv for each method was also recorded. statistical analysis agreement was measured between the in-house and commer- cial software (pettra . & hermes . ), the three methods available in the commercial software (hermes . , hermes %, hermes percist) and the different observers (hi & sfb). the intraclass correlation coefficient (icc) was used to measure consistency between mtv values [ ]. however, since the kolmogorov-smirnov (ks) normality test revealed a significant non-normal distribution (p < . ), mtv values were transformed using the cube root (ks, p = . ) before calculating the icc. kendall's tau correlation coefficient was used to measure agreement in the ranked mtv values. non- parametric bland-altman plots were used to evaluate median bias and limits of agreement ( . % and . % percentiles) from the untransformed mtv values [ ]. survival analysis was performed for all four methods of measuring mtv. pfs was defined as the time from diagnosis to the point of progression or death from any cause. os was defined as the time from diagnosis to death from any cause. patients still alive were censored at the date of last contact. receiver operating characteristic (roc) curves were used to assess predictability of each mtv measure and identify optimal cut-offs to predict pfs. optimal cut-off points were calculated as the minimum of the sum of squares of – sen- sitivity and – specificity (the point nearest to the top left corner of the roc curve). kaplan-meier analysis was used to estimate survival time statistics (median and -y pfs and - y os) for ‘low-’ and ‘high-mtv’ groups for each method. the log rank test was used to test if groups had significantly different survival curves. univariate cox regression was also applied to each mtv measure to calculate hazard ratios be- tween the groups. p < . was considered to be statistically significant. all statistics were calculated using r version . . [ ]. results patient population results are available for patients with a median follow up of . years (range . – . years). patient clinical character- istics were as previously reported [ ]. the -y pfs for the whole group was . % and -y os was . %. the values obtained for mtv using the different methods for the patient population are given in table . agreement between in-house and commercial software using the same segmentation threshold (suv ≥ . ) there was strong agreement between the total mtv measured in our previous publication using suv ≥ . to segment tu- mour with in-house software and the commercially available software (table ). bland-altman analysis (fig. ) showed no significant median bias nor trend in the difference in the un- transformed mtv values, with a median difference of . and limits of agreement (loa) for . % and . % percen- tiles, respectively, of − . and . cm . agreement between different mtv segmentation thresholds using commercial software agreement was strong and statistically significant between all three methods (table ) and strongest between the . and percist methods. rank correlation was also strongest be- tween . and percist methods with significant strong cor- relations between % and the other two methods. there was a marked difference, however, in the absolute values for mtv eur j nucl med mol imaging ( ) : – (table ) using the % method compared to the other methods that used either suv ≥ . or the mean liver suv (percist). this is because the % method selected a small- er proportion of tumour volume, especially where there was a heterogeneous distribution. the mean and median values of the % method were only % and % of the values using the . method. nine patients categorised in the high mtv group using . were categorised as having low mtv using % and, con- versely, patients categorised as having high mtvusing % were categorised as low mtv using . . five of these patients progressed, were in the high mtv group by the . method, and in the high-mtv group using the % method. although the suv ≥ . and percist methods showed a strong correlation, the loas on the bland-altman plot (fig. a) were wide. the bland-altman analysis showed a clear observable trend between mean value and difference, between % and the other methods (fig. b and c). a trend between the suv ≥ . and the percist method was also apparent (fig. a). this was due to patients with high disease burden, where the mtv calculated using the percist method was higher than using suv ≥ . because the liver had lower uptake in these individuals (average liver suvmax was . , average liver suvmean was . ). a further patients had liver involvement by lymphoma where the me- diastinal blood pool, which has lower uptake than the liver, was used instead as the reference region. inter-observer variation and ease of use there was excellent agreement between the two observers for measuring mtv with each of the methods using hermes software. the iccs were . , . and . , respec- tively, for hermes . , hermes % and hermes percist (p < . for all methods). kendall’s tau coefficients were . , . and . , respectively (p < . for all methods). bland-altman plots showed a median difference of . (loa: − . to . ), . (loa: – . to . ) and . (loa: – . to . ) for the methods, respectively (fig. ). no trends were observed. the % method was the most time-consuming. the aver- age time (and range) to measure total mtv using hermes software was . ( . – . ) minutes for the suv ≥ . meth- od, . ( . – . ) minutes for the ≥ % method and . ( . – . ) minutes for the percist method. the % method in- volved a two-stage process to outline the tumour with a constraining volume, find the maximum, then recontour using % of the maximum, rather than a single step as with the suv ≥ . approach. it also required editing of volumes in patients where large areas of tumour involved several nodal groups with heterogenous uptake. it is recommended that where counts differ by more than %, regions should be subdivided to avoid underestimation of tumour volume [ ]. the percist method was usually the quickest overall, as it allowed automatic segmentation of regions using the wizard, except in cases where there were separate head and neck views where the observer had to delineate the regions sepa- rately on this view. prediction of prognosis - roc & survival analysis the distribution and area under the roc curves for all four methods were similar, suggesting the methods to be close in accuracy for the prediction of pfs (fig. a) even though they table in-house (pettra) and commercial software (hermes) show strong correlation and close limits of agreement (loa) for measuring mtv using the . method. the three different methods using hermes software also show strong correlation and loa with one another, with the highest agreement observed be- tween the . and percist methods intraclass coefficient (icc) kendall’s tau median difference lower loa upper loa pettra . vs. hermes . . * . * . − . . hermes . vs. hermes percist . * . * . − . . hermes . vs. hermes % . * . * . . . hermes percist vs. hermes % . * . * . − . . *p < . table descriptive statistics for mtv values method mean sd min. q = % median q = % max. pettra . . . . . . . . hermes . . . . . . . . hermes percist . . . . . . hermes % . . . . . . eur j nucl med mol imaging ( ) : – gave different cut-offs for ‘low’ and ‘high’ mtv values. roc curves for os (fig. b) similarly yielded almost identical curves with similar optimal thresholds for the methods, except percist. the optimal threshold for percist for os ( cm ) was approximately twice as high as for pfs ( cm ). however, the method of choosing the optimal threshold bal- ances both sensitivity and specificity. considering this grouped measure and imperfect roc curves, the percist pfs threshold of cm for os was similarly optimal (spec- ificity %, sensitivity %). kaplan–meier analyses (fig. a) showed that the patients with low mtv have a significantly longer y-pfs compared to the patients with high mtv, regardless of the method. the y-pfs was % versus % for the low- and high-mtv fig. bland-altman plot of mtv . measured using pettra (in- house) software and hermes (commercial) software. the horizontal axis represents the mean of the two mtv methods and the vertical axis, the difference between them. the solid line shows the median difference (close to zero) and the dashed lines show the % limits of agreement (loa). the median is very close to zero, indicating no systematic differ- ence between the methods, and the range of loa is relatively small compared to the scale of the mtv values, indicating a good numerical agreement in the methods among the majority of patients fig. bland-altman plots (see fig. caption for description) comparing mtv measured by the different methods by a single observer. compared with fig. , the loas on each plot cover a range closer to the range of mtv values, indicating a poorer numerical match between each pair of methods. additionally, there is an observable trend: the difference in- creases as the mean value increases, indicating a systematic difference dependent on the mtv eur j nucl med mol imaging ( ) : – groups for the . method which was identical using pettra and hermes software, % vs. % for the % method and % vs. % for the percist method (fig. ). cox regression calculated the hazard ratios for pfs (high mtv compared to low mtv) to be . [ . – . % con- fidence interval (ci)], . ( . – . ci), . ( . – . ci) and . ( . – . ci) for pettra . , hermes . , hermes percist and hermes % methods, respectively (all p < . ). patients in the low-mtv group also had significantly lon- ger os than patients in the high-mtv group using the optimal pfs-derived thresholds with similar separation between high- and low-mtv groups for all methods (fig. b). the y-os was % vs. % for the . method, % vs. % ( % method) and % vs. % (percist method) (fig. b). the hazard ratios for os were . ( . – . ), . ( . – . ), . ( . – . ) and . ( . – . ) for pettra . , hermes . , hermes percist and hermes % methods, respectively (all p < . ). discussion baseline mtv, using fdg-pet, is a promising prognostic indicator in patients with dlbcl, which is better than using size-defined bulk [ , ]. tumour lesion glycolysis, which is the mtv multiplied by the mean suv in the volume, is also prognostic [ ], but appears no better than mtv in dlbcl [ , ]. cut-offs ranging from to cm have been reported to separate patients into groups with low and high baseline mtvs (table ) which are predictive of pfs and os. cut-offs have been derived using roc curve analyses [ – ] that depend on the distribution of values in the dataset, which are influenced by patient characteristics (table ), with populations with worse clinical characteristics tending to have a higher optimal cut-off for mtv, but also crucially, as demonstrated in our study, on the method used to outline the tumour volume. the influence of the method of measurement on the optimal cut-off has been previously re- ported in patients with hodgkin lymphoma [ ] and patients with t cell lymphoma [ ]. for clinical use, a con- sensus will be required on a suitable method and an optimal cut-off to define the mtv for specific lymphoma subtypes and treatment regimens, which will require validation in multicentre prospective trials. algorithms have already been developed for segmentation of volumes for radiotherapy planning purposes in solid tu- mours [ , ]. boundaries can be chosen using an absolute suv value or a percentage of the maximum suv. alternatively, more complex methods may be adopted, such as contrast-orientated, possibility theory and adaptive thresholding. no single method is likely to perform optimally in every patient, and consensus methods, such as the majority vote, have been reported to improve accuracy compared with the ‘ground truth’ of manual delineation by experts or surgical specimens [ ]. in a recent publication, consensus methods performed better than the worse performing of three established automatic segmentation methods and were close to the best-performing method in all patients [ ]. five seg- mentations were implemented in a single software platform − − − − − − mean obs & obs (mtv . ) d iff e re n ce o b s − o b s ( m t v . ) − − − − − − mean obs & obs (mtv %) d iff e re n ce o b s − o b s ( m t v % ) − − − − − − mean obs & obs (mtv percist) d iff e re n ce o b s − o b s ( m t v p e r c is t ) a b c fig. bland-altman plots (see fig. caption for description) comparing mtv measured by the different methods by two different observers. the median difference (solid lines) is close to zero for all three methods, indicating no systematic bias. the loas (dashed lines) are close, indicat- ing good agreement eur j nucl med mol imaging ( ) : – method pettra− . auc( %ci) . ( . − . ) hermes− . thr(cc) . ( . − . ) hermes− % spec . ( . − . ) hermes−percist sens . ( . − . ) . . . . . . . . . . . . a . . . . . . . . . . −specificity s e n si tiv ity method pettra− . auc( %ci) . ( . − . ) hermes− . thr(cc) . ( . − . ) hermes− % spec . ( . − . ) hermes−percist sens . ( . − . ) . . . . . . . . . . . . b . . . . . . . . . . −specificity s e n si tiv ity eur j nucl med mol imaging ( ) : – for evaluating patients scanned on four different cameras with lung and breast tumours and which also included eight pa- tients with lymphoma. so far in dlbcl, three methods have been proposed in the literature for measuring mtv [ , , ]. importantly none of these methods are vendor-specific and we have demonstrat- ed that measurement using the . method is robust using in- house software and commercial software. efforts are being made to develop automated freeware incorporating all the published methods [ ], but whether this will be acceptable for making patient management decisions using mtv as a prognostic tool remains to be seen. we tested these methods in a population of consecutive patients with de novo dlbcl treated with standard r- chop at a single institution, likely to be representative of the general patient population. we did not measure ct- based tumour burden as the ct component of the pet-ct scans were performed as low-dose non-contrast scans, in keeping with our usual clinical practice. the first method measured any activity that may be significant with a suv greater than . [ ]. the second method was derived from phantom experiments to give the best estimate of anatomical volume [ ]. the third method also measured any significant activity, but using liver uptake as the threshold [ ], which may be less influenced by factors that cause inaccuracy in suv measurement, but which may be more dependent on patient preparation and metabolic status, with reduction in normal liver uptake observed when there is very high tumour burden at baseline [ ]. the in-house and commercial methods for measuring mtv using the . method gave almost identical results. the percist method was very close to the . method, but probably overestimated mtv in approximately % of pa- tients who had low fdg uptake in the liver or liver involve- ment by lymphoma. the % method was very different in absolute mtv values compared to the other methods and was more susceptible to measurement variability when there was tumour heterogeneity. accordingly, we found the optimal cut-off for mtv to predict pfs ranged from to cm . although all three methods could predict pfs with similar accuracy in the over- all study population, we found for some individual patients with very intense masses, the % method appeared to under- estimate tumour volume compared with the other methods. the . method gave an optimal cut-off in our study popula- tion ( cm ) which was in the middle of the cut-offs previ- ously reported by song and colleagues using this method in two publications. the first measured mtv in good-prognosis patients with no extranodal involvement (derived cut-off cm ) [ ] and the second in poor-prognosis patients, all of whom had bone marrow involvement (derived cut-off cm ) [ ]. the % method gave an optimal cut-off in our population which was much lower than the cm [ ] and cm [ ], respectively, reported by meignan and col- leagues in two publications. there were twice as many pa- tients over the age of in the study with the lower cut-off, which is surprising as increased age is generally associated with worse prognosis. therefore, the cut-off might have been expected to be higher in an older population (table ). other clinical characteristics were similar in these two studies. the variability in the cut-offs reported for the % method raise concerns that the optimal cut-off may be more dependent on how regions are selected by different groups, when there is considerable tumour heterogeneity. there was high interobserver agreement for measuring mtv with all methods. the % method was the most com- plex to use in our experience, reflected in the time taken to measure mtvin a subset of patients. the percist method was usually the quickest, because it allowed automatic segmen- tation of all regions on the scan, using the ‘tumour finder’ wizard (©hermes medical solutions). this was despite need- ing to edit out areas that had uptake above the liver, accounted for by areas with high physiological uptake such as the brain and bladder. inflammatory uptake might also require editing, but we did not observe this in the patients in our study (fig. ). the study confirmed that the prognostic role of baseline mtv [ ] using software developed in-house could be reproduced accurately using commercially developed soft- ware. we previously found that baseline mtv was a good prognostic indicator, better than size-defined bulk [ ]. using all three methods, y-pfs in the current study was similar to the values reported in our earlier manuscript of % for patients with high mtv compared to % for pa- tients with low mtv [ ] and compares favourably with pre- vious publications [ , ]. the sensitivity and specificity of the three methods is shown in fig. . we combined baseline mtv with early response assess- ment at two cycles in an attempt to improve prognostic value in our previous work [ ]. high mtvand failure to achieve a complete metabolic response (deauville score , ) at cycles was found in % of patients who experienced % of study events with y-pfs of only %. combining mtv with base- line factors rather than early response might be a more attrac- tive option. recently, el-galaly and colleagues [ ] reported that combining baseline pet findings with the new national comprehensive cancer network (nccn) ipi, which splits patients according to age groups > , > and > years and by ldh levels – or > times the upper limit of normal, was better at predicting prognosis than pet combined with the ipi or revised ipi. furthermore, the number of involved �fig. roc curves for pettra . , hermes . , hermes % and hermes percist for a) pfs and b) os. the tables show the area under the curve (auc) with % confidence intervals ( % ci), opti- mum threshold value for each mtv (thr), with associated sensitivity (sens) and specificity (spec) eur j nucl med mol imaging ( ) : – events/number y-pfs method med−surv(d) logrank n p pettra− . n hermes− . p hermes− % n hermes−percist p . ** . ** . ** . ** / / / / / / / / . . . . . . . . − − − − . . . . . . time (days) p ro g re ss io n f re e s u rv iv a l events/number y-os method med−surv(d) logrank n p pettra− . n hermes− . p hermes− % n hermes−percist p . ** . ** . ** . ** / / / / / / / / . . . . . . . . − − − − . . . . . . time (days) o ve ra ll s u rv iv a l a b eur j nucl med mol imaging ( ) : – extranodal sites and the presence of bone/bone marrow, pleura and female genital organ involvement was associated with inferior prognosis. combining nccn-ipi and mtvand pos- sibly other baseline imaging features as suggested by el- galaly and colleagues [ ] might be even more informative. the cell of origin is also known to influence prognosis, with the activated b cell (abc) subtype conferring a worse prognosis than the germinal centre b cell (gcb) subtype [ ]. genetic rearrangements including overexpression of bcl and myc which regulate apoptosis and proliferation area are also associated with inferior prognosis [ , ]. cottereau et al. reported on patients [ ] mostly with ad- vanced stage dlbcl, combining molecular profiling data with mtv. high mtv using a cut-off of cm (by % method) was associated with identical y-pfs of % in our study. the subset of patients with high mtvand the abc subtype had y-pfs of % and os of %. patients with overexpression of bcl and/or myc had inferior prognosis irrespective of mtv. mtv, however, separated the remain- ing patients into good- and intermediate-prognosis groups. this suggests a potential for the strategy of combining fig. an example of a case outlined using the . method (blue), the % method (red) and the percist method (purple) with representative coronal, sagittal, axial and d images. the top panel shows the initial ‘automatic’ volumes. all methods result in similar volumes for disease below the diaphragm (black arrow, sagittal view). however, for disease above the diaphragm, the mtv is grossly underestimated using the % method and separate bounding boxes of differing sizes have to be drawn (green boxes in the bottom panel) to delineate additional volumes, increasing the time and complexity of mtv selection. the percist method detects physiological uptake in the brain and urinary tract (purple arrows) which must be edited out by the observer �fig. kaplan–meier survival curves for pettra . , hermes . , hermes % and hermes percist for a) progression-free survival (pfs) and b) overall survival (os). both plots use pfs-derived optimal thresholds to define high and low mtv. solid line = low-mtv group , dotted lines = high-mtv group (defined by optimal thresholds). ** p < . . the table shows log-rank scores from comparison of non- progressor (n) & progessor (p) for each mtv method, with number of events, -year pfs ([ y-pfs) and median survival in days (med-surv). log-rank scores revealed significant differences in pfs between progressors & non-progressors with all methods. no non-progressor groups reached below % pfs (i.e. no median survival is available) eur j nucl med mol imaging ( ) : – imaging and other biomarkers for pretreatment risk referred to as ‘radio(gen)omics’. evaluation will involve pooling of data to derive and validate risk estimates with international collaboration. in summary, all the published methods for measuring mtv in dlbcl were prognostic in our study for pfs and os. the optimal cut-off using the . method in this unse- lected patient population was in line with cut-offs published by another group using this method in two populations with good and poor prognosis, respectively. a limitation was that scans were acquired at min, longer than currently recom- mended by eanm procedural guidelines [ ]; nonetheless, in our hands, the . method had the advantage of being easy to use and reproducible across different software platforms and between observers. in our opinion, contouring methods based on percentages of the maximum uptake in the volume may be easier to apply in solid tumours [ , ] than in dlbcl, where patients often present with multiple regions with heterogeneous uptake. developments in software may overcome some of the difficulties with measurement that we encountered. the methodology is evolving and will require prospective validation in sufficiently large patient cohorts combined with other prognostic factors, to determine whether robust pre- treatment risk estimates can be identified to select patients in whom to test alternative treatments including novel agents. acknowledgements the authors acknowledge financial support from the department of health via the national institute for health research (nihr) comprehensive biomedical research centre awards to guy’s & st thomas’ nhs foundation trust in partnership with king’s college london and the king’s college london/university college london comprehensive cancer imaging centre funded by the cruk and epsrc in association with the mrc and doh (england). professor barrington acknowledges support from the nihr [rp- - - - ]. the views expressed are those of the author(s) and not necessarily those of the nhs, the nihr or the department of health. compliance with ethical standards ethical approval patient data were extracted from case records and reviewed only by members of the responsible clinical team, in compli- ance with the uk data protection act; consequently, specific research ethics approval and individual patient consent was not required. open access this article is distributed under the terms of the creative commons attribution . international license (http:// creativecommons.org/licenses/by/ . /), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appro- priate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. references . jo a, weisenburger dd. new approach to classifying non- hodgkin’s lymphomas: clinical features of the major histologic subtypes. j clin oncol. ; : – . table patient clinical characteristics and methods used in studies reporting mtv in dlbcl n pfs and os of study cohort (%) % > y % stage iii/iv % bulk ipi ps ≥ treatment method cut-off (cm ) pfs by mtv (%) os by mtv (%) song [ ] at y: pfs os % stage iii, no stage ivor i % ≥ cm % ≥ % rchop suv ≥ . at y: vs. *- * at y: vs. ** sasanelli [ ] na % ≥ cm % ≥ (aaipi) % rchop/ racvbp ≥ % suvmax at y: vs. at y: vs. ** song [ ] na % had bmi % ≥ (nccn-ipi) % rchop suv ≥ . at y: ~ vs. - %** at y: ~ vs. %** cottereau [ ] at y: pfs os % ≥ cm % ≥ (aaipi) % rchop/ racvbp ≥ % suvmax at y: vs. at y: vs. ** mikhaeel [ ] and current study at y: pfs os % ≥ cm % ≥ % rchop suv ≥ . at y: vs. ** at y: vs. ** **independent predictor in multivariate analysis for survival bmi – bone marrow involvement, ps - performance status, rchop - rituximab and cyclophosphamide, doxorubicin, vincristine, prednisone, racvbp – rituximab and doxorubicin, cyclophosphamide, vindesine, bleomycin, and prednisone eur j nucl med mol imaging ( ) : – . habermann tm, weller ea, morrison va, et al. rituximab-chop 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chartier l, modzelewski r, casasnovas o, itti e, et al. baseline total metabolic tumor volume measured with fixed or different adaptive thresholding methods equally predicts outcome in peripheral tcell lymphoma. j nucl med. ; : – . . sridhar p, mercier g, tan j, truong mt, daly b, subramaniam rm. fdg pet metabolic tumor volume segmentation and patho- logic volume of primary human solid tumors. ajr am j roentgenol. ; : – . . kruse v, mees g, maes a, d’asseler y, borms m, cocquyt v, et al. reproducibility of fdg pet based metabolic tumor volume mea- surements and of their fdg distribution within. q j nucle med mol imaging. ; : – . . schaefer a, kim yj, kremp s, mai s, fleckenstein j, bohnenberger h, et al. pet-based delineation of tumour volumes in lung cancer: comparison with pathological findings. eur j nucl med mol imaging. ; : – . . song mk, yang dh, lee gw, lim sn, shin s, pak kj, et al. high total metabolic tumor volume in pet/ct predicts worse prognosis in diffuse large b cell lymphoma patients with bone marrow in- volvement in rituximab era. leuk res. ; : – . . johnson na, slack sw, savage kj, et al. concurrent expression of myc and bcl in diffuse large b-cell lymphoma treated with rituximab plus cyclophosphamide, doxorubicin, vincristine, and prednisone. j clin oncol. ; : – . . boellaard r, delgado-bolton r, oyen wj, giammarile f, tatsch k, eschner w, et al. fdg pet/ct: eanm procedure guidelines for tumour imaging: version . . eur j nucl med mol imaging. ; ( ): – . https://doi.org/ . /s - - -x. eur j nucl med mol imaging ( ) : – https://www.r-project.org https://doi.org/ . /s - - - https://doi.org/ . /s - - - https://doi.org/ . /journal.pone. https://doi.org/ . /journal.pone. https://doi.org/ . /s - - -x 	defining the optimal method for measuring baseline metabolic tumour volume in diffuse large b cell lymphoma 	abstract 	abstract 	abstract 	abstract 	abstract 	introduction 	patients and methods 	interobserver variation 	statistical analysis 	results 	patient population 	agreement between in-house and commercial software using the same segmentation threshold (suv ≥  . ) 	agreement between different mtv segmentation thresholds using commercial software 	inter-observer variation and ease of use 	prediction of prognosis - roc & survival analysis 	discussion 	references wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ sammenskirving_phd_ingelin testad-final agitation and use of restraint in nursing home residents with dementia prevalence, correlates and the effects of care staff training ingelin testad dissertation for the degree philosophiae doctor (phd) at the university of bergen agitation and use of restraint in nursing home residents with dementia prevalence, correlates and the effects of care staff training faculty of medicine institute of clinical medicine university of bergen, norway department of psychiatry stavanger university hospital stokka teaching nursing home municipality of stavanger stavanger, norway, scientific environment this thesis was conducted during the years to under supervision of the department of psychiatry, stavanger university hospital, stavanger, norway and in co-operation with stokka teaching nursing home, stavanger, norway and the norwegian centre for movement disorders, stavanger, norway. acknowledgements first of all, i want to thank all the participants in this study. without you, this would not have been possible. a very special thanks to my supervisor dag aarsland, for inspiring me to go into the field of research in the first place. thank you for all your encouragement, enthusiasm and patience in guiding and supervising me throughout this process. i am very grateful for your willingness to teach and for always being accessable, answering and giving feed back, no matter small or large issues. also a special thanks to anne margrethe kinn aasland, who has been my colleague and partner in the development and implementation of the intervention. thank you for numerous inspiring discussions, for sharing your knowledge and for all your support, contribution and participation throughout this work. a sincere thanks to hilde rydland marianayagam for doing such an important work in collecting all the data for the second study and to allan Øvereng for the first study. a special thanks to all my co-authors for their contribution to this work and specially stefanie auer and clive ballard, for your encouragement and for willingly sharing your knowledge throughout this work process, mary mittelman, for hosting me as a visitor scholar at the university of new york, jane fossey, yvonne donabauer and to aslaug mikkelsen, for your knowledgeable contribution and support, kolbjørn brønnick, for always being willing to offer solutions on statistic questions, and technical computer issues. and a great thanks to all my colleagues at norwegian centre of movement disorder, for a stimulating and supporting scientific environment. a special thanks to jan petter larsen, kirsten lode and ingrid leiknes and a very special thanks to karen rinden simonsen, for your continuous support, your abilities to offer solutions and follow through in all issues possible. also a sincere thanks to the division of psychiatry, sus which has been my main working place through most of this work. a special thanks to jan olav johannessen, for the scientific environment you have provided for years and to all my colleagues. also a great thanks to the scientific environment at sus, with a special thanks to stein tore nilsen and målfrid meling for the support of this thesis and to the phd group for great encouragement and support. a sincere thanks to all my colleagues at stokka teaching nursing home and to stavanger municipality, for inspiration and support to continue this work. and there are also many dear colleagues and friends that i wish to thank for great support and encouragement throughout this process: målfrid meling, you have been a wonderful leader teaching me to step one stone at a time, kari vevatne, for bringing the education of nursing science to stavanger, you have always been inspiring and a great support, arnfinn fiskå, for numerous conversations on the ethics of caring and for sharing your knowledge and wisdom, karin smedvig and vigdis vagle, for always offering encouragement and support. also a great thanks to my biking, hiking and travelling friends for encouragement and lots of fun and a special thanks to my always faithful friend ingvild hjelle sanne and to connie norup for all your support. last but not least, to my children joakim and maiken, you are both amazing individuals and i am proud and honoured to be your mom. thank you for being who you are and for all the great adventures and experiences we have had through out this process and otherwise. nothing is more important than that! and finally, a very grateful thanks to my parents, sis and brother, for all your loving support, for all the practical help and for always believing in me. this thesis was supported by norwegian research council, the leiv erikson mobility program and stavanger university hospital. introduction “in the past, most people didn’t age – they died”, states dychtwald in his reflections on how the st century, will be ruled by the old. today, elderly have grown in numbers with a higher concentration than any other age group, the united nations expects that there will be nearly two billion people in the world years and older, by the year . today of every persons living is age or older, by that ratio will double to to , and the oldest old ( years and older) is the fastest growing segment of the older population. dementia is one of the most prevalent syndromes in the elderly population, and has become one of the major challenges to public health and elderly care systems, due to the universal aging of the population. worldwide, there are . million of new cases every year, and the number of people with dementia in was million, which will almost double every years to million by and million by , providing no changes in mortality and no effective prevention strategies or curative treatment are provided. , the cost of dementia can be considerable. while most people with dementia are retired and do not suffer income losses from their disease, the cost of care is often enormous. financial burdens include lost wages for family caregivers, medical supplies and drugs, home modifications to ensure safety and institutionalisation. the psychological cost is not as easily quantifiable but can be even more profound. the person with dementia loses control of many of the essential features of his life and personality, also affecting loved ones, as they continue to cope with the burdens of increasing dependence and unpredictability. over half of the persons with dementia in norway live in long-term care homes, and % of residents in nursing homes have dementia, the majority with severe functional impairments and complex needs including associated behavioural changes, with severe consequences for their functioning and quality of life. in addition, recent research has demonstrated that there are still important challenges in order to improve quality of life for residents. the proportion with psychiatric symptoms is very high, and approximately two-thirds of residents in norwegian nursing homes experienced at least one psychiatric symptom during the last month prior to assessment, and the use of restraints is high. residents with dementia experience behavioural changes, including apathy, agitated and aggressive behaviour, which affect the quality of life of the resident himself, their family and care staff. in a large nursing home study conducted in norway, degree of dementia, and the presence of aggressive or agitated behaviour, were highly associated with use of restraint, which is potentially harmful. to preserve the personal control, dignity and quality of life of these vulnerable individuals, as long as possible, is an important goal of our society. caring for people with dementia requires specific skills and knowledge of the cognitive, functional and emotional changes accompanying dementia, well trained care staff that can provide comprehensive, individualized and person centred care and high quality physical and social living conditions. dementia is the most common reason for institutionalization, and the increased number of residents with dementia will lead to a marked increase in the need for qualified care staff in nursing homes. the question if we have enough care staff to carry out health care in our welfare system, is becoming a more acutely question to attend to, as the number of elderly and the demand of sufficient health care is increasing. by year , the shortage of registered nurses in general is forecasted to be % below the projected requirements, work environment and job stress has been implicated in the nursing shortage. a shortage of health care workers towards year is forecasted in norway as well. health and well-being in care staff in nursing homes is an important issue, as well as organizational and psychosocial factors, in achieving the goal of personal control, dignity and quality of life in residents with dementia. therefore, the objective of this thesis was to study the relationship between agitation, use of restraint, carer burden, organizational and psychosocial factors, and whether agitation and use of restraint could be reduced by means of a novel care staff training. abstract background dementia is one of the most prevalent syndromes in the elderly population, and over half of people with dementia live in long-term care homes. % of residents in nursing homes have dementia, the majority with severe functional impairments and complex needs. agitation and other behavioural changes are common, with severe consequences for their functioning and quality of life, including use of restraint and use of psychotropic drugs. to preserve the personal control, dignity and quality of life of these vulnerable individuals, as long as possible, is an important goal of our society. few studies have explored the relationship between agitation and factors such as stress in care staff and working conditions, and there is little evidence whether education and guidance in care staff can improve agitation and reduce use of restraint and psychotropic drugs. objective the objective of this thesis was to study the relationship between agitation and use of restraint, carer burden, organizational and psychosocial factors and whether agitation and use of restraint could be reduced by means of a novel care staff training. methods descriptive, cross-sectional surveys were conducted to analyse the prevalence of agitation in nursing home residents, and to study correlates of health and well-being in care staff. residents and care staff from four nursing homes in rogaland county were included. in addition, data from nursing homes in england and austria were used. two cluster-randomized controlled trials were conducted to study the effect of a novel care staff training program; relation related care (rrc). data on agitation and use of restraint and antipsychotics were collected immediately before and after the - month intervention period by a research nurse, blinded for study hypothesis. in the second study, an additional follow-up assessment was conducted months after completion of the intervention. standardized measures were used: clinical dementia rating scale (cdr), functional assessment rating scale (fast) and the global deterioration scale (gds) were used to rate severity of dementia. two rating scales were used to score agitation; brief agitation rating scale (bars) and cohen-mansfield agitation inventory (cmai). frequency of use of restraint was determined by a standardized interview, where all use of restraint during the last seven days was recorded. three scales measured health and well being in care staff: perceived stress scale (pss), psychological distress (hscl- ) and subjective health complaints (shc). organizational and psychosocial factors were measured by general nordic questionnaire for psychosocial and social factors at work (qpsnordic). results we found that . % of the residents with dementia exhibited at least one agitated behaviour at least weekly and . % several times a week. the six most common agitated behaviours were repetitious sentences or questions, complaining, cursing, pacing, negativism and general restlessness. however, agitation in the norwegian nursing homes was less common than in nursing homes in uk and austria. the level of agitation differed between countries, with higher cmai scores in the austrian nursing home compared to uk and norwegian nursing homes. similarly, the use of psychotropic drugs differed significantly between the homes, with a higher proportion on antipsychotic drugs in uk and austrian compared to norwegian nursing homes. organizational and psychosocial factors, in particular those related to the organizational structure of the nursing home were associated with all three measures of health and well-being in care staff. leadership, mastery and control of work were the three organizational and psychosocial factors which significantly explained the variance in care staff health and well being. in contrast, agitation in residents was not significantly associated with any of the measures of health and well being in care staff. in the first intervention study, the proportion of restraint declined with % in the treatment group and increased with % in the control group. this difference was significant. in contrast, agitation did not differ between the groups. in the second study, the intervention led to both reduced severity of agitation and reduction in restraint, which was evident by a much smaller increase in the intervention group compared to the control group. the improvement of agitation continued months after the completion of the intervention, indicating that sustained improvement of agitation can be achieved by means of staff training. the effect on restraint use however, seemed to be short-lived, suggesting that continuous supervision is needed to achieve sustained reduction of the use of restraint. conclusion agitation is common in residents with dementia in norwegian nursing homes. there is a need to explore factors contributing to agitation, in order to understand and manage it effectively and to avoid misdiagnose of symptoms, reduce inappropriate use of drugs and restraint, and thereby improving the conditions and quality of life for residents with dementia in nursing homes. our findings from the intervention studies suggests that by lowering the care staff – resident ratio and by providing additional education, guidance and support, improved care of residents can be achieved. list of publications testad, i., aasland, am., aarsland, d. the effect of staff training on the use of restraint in dementia. a single-blind randomized controlled trial. (int. j. geriatr. psychiatry ; : - ). testad, i., aasland, am., aarsland, d. prevalence and correlates of disruptive behaviour in patients in norwegian nursing homes. (int. j. geriatr. psychiatry ; : - ). testad, i., auer, s., mittelman, m., ballard, c., fossey, j., donabauer, y., aarsland, d. nursing home structure and association with agitation and use of psychotropic drugs in nursing home residents in three countries: norway, austria and england. (int. j. geriatr. psychiatry ; oct epub ahead of print). testad, i. mikkelsen, a., ballard, c., aarsland, d.: health and well being in care staff and it’s relation to organizational and psychosocial factors, care staff and resident factors in nursing homes. (int. j. geriatr. psychiatry ; oct epub ahead of print). testad, i. ballard c, bronnick k., aarsland, d.: the effect of staff training on agitation and use of restraint in nursing home residents with dementia: a single-blind randomized controlled trial. (in press, int. j. clinical psychiatry). list of abbreviations adl activity of daily living anova one-way analysis of variance bars brief agitation rating scale bpsd behavioural and psychological symptoms cdr clinical dementia rating scale cmai cohen-mansfield agitation inventory fast the functional assessment staging gds the global detoraction scale hscl- hopkins symptoms check list icd- international statistics classification of disease and related helath problems ndb need-driven dementia-compromised behavior model pss perceived stress scale qpsnordic general nordic questionnaire for psychosocial and social factors at work rrc relation related care shc subjective health complaint contents scientific environment.......................................................................................................... acknowledgements.................................................................................................................. introduction................................................................................................................................. abstract........................................................................................................................................... list of publications................................................................................................................ list of abbreviations ............................................................................................................ . introduction .................................................................................................................... . . dementia ................................................................................................................................ . . etiology ....................................................................................................................... . . clinical course and symptoms .................................................................................... . . prevalence .................................................................................................................. . . norwegian nursing home care .................................................................................... . agitation in residents with dementia ........................................................................ . . clinical manifestations and consequences.................................................................. . . frequency and etiology............................................................................................... . . . . understanding agitation due to causes in the disease itself ..................................................... . . . . understanding agitation due to unmet needs ........................................................................... . . . . understanding agitation due to causes in the physical or social environment ......................... . . management of agitation ............................................................................................ . . . psychosocial treatment ............................................................................................................ . . . pharmacological treatment ...................................................................................................... . . . treatment approaches in clinical practise ................................................................................ . . . care staff – resident communication ....................................................................................... . . . . care staff – resident interaction............................................................................................... . use of restraint in resident with dementia in nursing homes............................. . . definitions .................................................................................................................. . . frequency and causes ................................................................................................ . organizational and psychosocial work environment in nursing homes, health and well-being in care staff .......................................................................................................... . . organizational and psychosocial environment .......................................................... . . health and well-being in care staff ............................................................................ . . . stress ....................................................................................................................................... . . . subjective health complaints................................................................................................... . aims of the study .......................................................................................................... . methods............................................................................................................................... . design ................................................................................................................................. . . cross-sectional study ................................................................................................. . . clinical trial ............................................................................................................... . . . the educational intervention; relation related care (rrc) .................................................. . subjects ............................................................................................................................. . nursing home environment .......................................................................................... . data collection .............................................................................................................. . . assessment scales ....................................................................................................... . . care staff outcomes .................................................................................................... . ethical and legal considerations ............................................................................. . statistical methods ....................................................................................................... . results ................................................................................................................................. . discussion............................................................................................................................ . findings in context .......................................................................................................... . . agitation: frequency and context............................................................................... . . organizational and psychosocial environment, health and well-being in care staff: contributing factors .................................................................................................................... . . management of agitation ............................................................................................ . . use of restraint in nursing homes ............................................................................... . methodological issues .................................................................................................. . . design ......................................................................................................................... . . case selection ............................................................................................................. . . methods of measurement ............................................................................................ . . statistics ...................................................................................................................... . conclusions....................................................................................................................... source of data ........................................................................................................................... paper i-v appendix table education . introduction . . dementia dementia can be defined as an acquired persistent impairment of intellectual function characterized by progressive deteriorations in multiple cognitive domains, and is the principal cause of disability, institutionalization and shorter survival in older people. international classification of diseases and related health problems, th version (icd- ) (world health organization, ) lists the following criteria for dementia syndrome; a. cognitive deficits that interfere with daily activities have presented for at least six months . decline in memory, which is most evident in the learning of new information, although in more severe cases, the recall of previously learned information may also be affected. the impairment applies to both verbal and non-verbal information. . decline in other cognitive abilities characterized by deterioration in judgment and thinking, such as planning and organizing, and in the general processing of information. b. preserved awareness of the environment. c. decline in emotional control or motivation, or a change in social behaviour, manifest as at least one of the following: . emotional lability . irritability . apathy . coarsening of social behaviour for a confident clinical diagnosis, the cognitive decline should have been present for at least six months. the diagnosis is further supported by the evidence of damage to other higher cortical functions, such as aphasia, agnosia and apraxia. . . etiology dementia is caused by specific brain diseases, where alzheimer's disease is the most common. between and percent of all people with dementia are suffering from alzheimer's disease - a degenerative disease, which slowly and progressively affects neurons. the disease is named after aloïs alzheimer, a german neurologist, who in first described the symptoms as well as the neuropathological features of alzheimer's disease such as plaques and tangles and neuronal loss in the brain. the disease affects memory and other mental functioning (e.g. abstract thinking and language), but can also lead to other problems such as confusion, changes of mood and disorientation in time and space. the second most common cause of dementia is vascular dementia. this is caused by cerebrovascular disease, for example a series of small strokes (infarcts), which interfere with the supply of blood to the brain. even though these strokes tend to be quite small, the combined effect can lead to considerable problems for the person to think, reason, remember and communicate. dementia with lewy bodies, parkinson’s disease with dementia and fronto-temporal dementia are other forms of degenerative dementias. most forms of dementias are irreversible. dementia may also arise from other conditions, such as long-term alcohol abuse, aids or vitamin deficiencies. . . clinical course and symptoms the symptoms of dementia normally involve a gradual and slow deterioration of the person's ability to function. there is a large inter-individual variation of the progression of the disease, although towards the latest stages of the disease, the progression seems to be more similar. the functional assessment staging (fast), is one way to describe the progression of the disease by assessing a persons ability to perform basic activities of daily living. it is a procedure which describes a continuum of successive stages and sub stages from normality to most severe dementia of the alzheimer's disease type. the assessment describes the progressive changes in universal recognizable functions such as the ability to put on clothes, to maintain continence, to speak and walk. the clinical dementia rating (cdr), is another procedure which characterizes six domains (memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care) of cognitive and functional performance applicable to alzheimer’s disease and related dementias on a -point scale. social and daily functioning progressively declines, usually leading to dependence and helplessness. the brain damage affects the person's mental functioning (memory, attention, concentration, language, thinking, etc.) and this in turn has repercussions on behaviour. especially in the later stages of the condition, affected persons may be disoriented in time (not knowing what day of the week, day of the month, or even what year it is), in place (not knowing where they are), and in person (not knowing who they are or others around them). behavioural and psychological symptoms (bpsd), are major and frequent manifestations of alzheimer’s disease and other dementias and have been shown to occur in a sizeable proportion in demented nursing home residents. bpsd such as depression, apathy, delusion, anxiety and agitation , affect most if not all patients at some point in the disease course. . . prevalence age is the most important risk factor for dementia. the united nations expects that there will be nearly two billion people in the world years and older, by the year . today of every persons living is age or older, by that ratio will double to to , and the oldest old ( years and older) is the fastest growing segment of the older population. worldwide, there are . million of new cases of dementia every year, and the number of people with dementia, will double every years providing no changes in mortality and no effective prevention strategies or curative treatment are provided. in norway, % of elderly people over years live in nursing homes with a mean age of years. , of the persons in norway suffering from dementia, , % are institutionalized. when adding the families of persons with dementia, approximately . persons in norway are affected by the disease. dementia is the most common reason for nursing home placement , , and approximately - % of the residents in norwegian nursing homes suffer from dementia. - the majority of the residents have severe functional impairments and complex needs including associated behavioural changes, with severe consequences for their functioning and quality of life. in addition, recent research has demonstrated that there are still important challenges in order to improve quality of life for residents. the proportion with psychiatric symptoms and behavioural changes, and the use of restraint are high and affect the quality of life of the resident himself, their family and care staff. a large study conducted in norway by selbæk and his colleagues, , , in a representative sample of . nursing home residents across four norwegian counties, reported that more than % were judged to have dementia and approximately two-thirds of residents exhibited clinically significant psychiatric or behavioural symptoms. the same study also showed that use of psychotropic medication is widespread, with approximately % receiving one or more psychotropic drugs and more than % receiving antipsychotics. another large study conducted in norway by kirkevold and his colleagues, showed that . % of residents in regular units and % of residents in special care units had been subjected to some type of restraint during the previous days. degree of dementia, aggressive or agitated behaviour and the need for help with activities of daily living (adl), were highly associated with the use of restraint. , . . norwegian nursing home care a culture change has taken place in norwegian nursing home care during the past two decades with a growing interest in improving the quality of care in elderly in general, and with an emphasize on persons with dementia. culture change refers to systematic efforts to improve services, maintaining and improving quality of life for residents and their caregivers, providing healthy work environment for care staff through transforming the culture of care (beliefs, values, understanding, knowledge and behaviours) and may require changes in organization practices, physical environments and relationship at all levels. , in the municipalities health services act was expanded and county nursing homes were transferred to the municipalities in norway. thus, the care of the elderly is the responsibility of the municipalities; including social services, home nursing and institutional care. the nursing home wards can broadly be classified into regular units with - beds and special care units with - beds. in addition to smaller specialized units with private room and baths, the culture change may include increased care staff – resident ratio, emphasis on empowerment and development of education for care staff and on individualized, person-centered care. the norwegian government has conducted a “regulation of quality of care” which emphasizes the importance of quality of life and preserved residents’ rights, describes the services that should be provided by the municipal, including care in nursing homes for persons with dementia. the focus is more person-oriented, describing the rights of the residents to make daily life decisions. the regulation describes that a person has a right to decide when to go to bed, when to eat, when to have visitors and how to have a private life in the institution. the person has a right to have skilled help to manage the adl and a right to take part in leisure activities. recently, the norwegian government introduced a detailed plan to increase the quality of care towards . , in the period of - , twenty teaching nursing homes, were established throughout norway. the overall aim of the teaching nursing homes, is to enhance knowledge and research in nursing homes, improve quality of care, and recruitment of educated care staff. in kirkevold and colleagues studied to what degree norwegian nursing homes provide services in line with the core areas of the “regulation of quality of care”. they concluded that ward characteristics such as type of ward, size and care staff – resident ratio do have an influence on quality of care. however, even though most of the residents receive good basic care in norwegian nursing homes, taking part in leisure activities and going outside for a walk, were often neglected, and the same authors later reported that more than half of the patients in norwegian nursing homes, experienced two or more quality deficiencies in the care during one week. . agitation in residents with dementia in addition to the cognitive symptoms of dementia, a wide range of psychological and behavioural changes occur, often labelled with the global term; behavioural and psychological symptoms (bpsd). bpsd are commonly observed in all dementia types, - and known as important predictors of nursing home placement. , more than % of residents with dementia experience behavioural symptoms including a range of symptoms such as agitation, anxiety, depression, apathy, wandering, sleep disturbance, delusions and hallucinations. agitation is one of the most common clusters of bpsd, , defined by cohen-mansfield and billig ( ) as inappropriate verbal, vocal or motor activity that; may be abusive or aggressive toward self or others, is performed with inappropriate frequency, or is inappropriate according to social standards for the specific situation. the identification and quantification of agitation in nursing home residents with dementia is an important area of study, due to the high proportion with dementia in nursing homes. agitation produces increased suffering and distress for the patients themselves and their caregivers, , , and agitation has shown to be a significant predictor of their caregivers’ mental and physical health, including severity of stress and quality of life and causes excess disability including reduced function in adl. failure to understand the problem and inability to manage the behaviour may lead to increased and inappropriate use of psychotropic medication and restraint. , agitation also causes increased demand on staff resources, affects staffing requirements and environment, increases the costs of care and is a common stressor leading to staff burnout and turn-over in institutions. - increases in problem behaviour and agitation in persons with dementia, are important determinants of institutionalization. finally, institutionalization is a considerable cost to the economy of the society, and to the human cost of the patient and the family. a better understanding and management could therefore lead to a delay in institutionalization, increased quality of life for the patient and his family. jiska cohen-mansfield did a pioneering research to describe behavioural symptoms in dementia and further characterized syndromes of agitation based on factor analyses of the cohen-mansfield agitation inventory (cmai); factor – aggressive behaviours: hitting, kicking, pushing, scratching, tearing things and cursing. factor – physically non-aggressive behaviours: pacing, inappropriate robing or disrobing, repetitious sentences or questions, trying to get to a different place, general restlessness, handling things inappropriately and repetitious mannerism. factor – verbally agitated behaviour: complaining, constant request for attention, negativism, repetitious sentences or questions factor – hiding/hoarding behaviour (emerged for day shift only) . . clinical manifestations and consequences there is a growing literature on the complex interrelationship within the symptoms of bpsd - and the association of agitation with other symptoms and behaviours. several studies have shown agitation to be associated with depression, psychosis, apathy and severity of dementia. , association between poor food intake, weight loss and agitation, have also been found. furthermore different agitated behaviours (as outlined in . ) exhibit different manifestations and are associated with different symptoms and behaviours. physically and verbally non-aggressive behaviours are predicted by different factors. physically non-aggressive behaviours, such as wandering and pacing have been reported to be associated with increased cognitive impairment and residents exhibiting this behaviour was reported to be more physically healthy, have fewer medical problems and better appetites than others. the relationship between dementia and verbally non-aggressive behaviour is less strong than with physically non-aggressive behaviour. verbally non-aggressive behaviour such as complaining is more common in mild and intermediate stages of dementia. other types of vocal agitations however, like screaming are associated with more severe cognitive impairment. other factors which relate to verbally non- aggressive behaviour are depressed affect, and higher levels of pain. , depression was found to be the strongest predictor of verbally non-aggressive behaviour. aggressive verbal and physical behaviour have been found to be related to depressive symptoms, delusions, hallucinations, constipation and resistiveness to care. . . frequency and etiology several studies have reported prevalence rates of bpsd in nursing home residents as high as - %, , , , and the symptoms tend to increase with increasing dementia severity and are common in all types of dementia. in the norwegian study by selbæk and colleagues, a prevalence of . % was found, and margello-lana et.al reported % in uk nursing homes. in the us cache county study a prevalence of % was found, and in the european alzheimer’s disease consortium (eacd) at least one feature of bpsd was found in % of the residents. agitated behaviours are amongst the commonest of bpsd, and according to logsdon et.al., occur in as many as - % residents at some point during the course of their illness. there are usually multiple interacting causes of the behaviour, and different reasons why it is seen as a problem. biological, psychological and social factors may contribute to agitation, including personality, personal history, and physical and psychosocial environment. thus, organisational aspects and culture of care of the nursing homes are likely to have an impact on the risk for agitation. structural and functional brain changes associated with the disease, physical diseases other than brain disease, delirium, and use of medication may cause agitation. physical and psychosocial factors such as under-stimulating or demanding environments, the person’s reduced ability to communicate, that his/her needs are not met, , loneliness, boredom, depression, sensory deprivation, overwhelming influx of external stimuli , and premorbid characteristics and history may influence resident’s behaviour and increase the risk of agitation. persons suffering from dementia are at high risk to suffer from severe pain, which may cause agitation as well. throughout the last decade, the concept of agitation has become more nuanced, acknowledging several causal factors, including interpersonal interaction and psychosocial and emotional needs, and that the behaviour can provide valuable information about the resident condition. the change from the biomedical model towards person-centered care, from task-orientation to a holistic model, the concept of the person being central to deliver high-quality care, is increasingly advocated in clinical practice and academia. the biomedical model of acute care, the focus of nursing on physical conditions and adl, has been the traditional way of nursing home care, resulting in neglect of psychosocial and emotional needs and use of inappropriate usage of psychotropic medication with severe tolerability issues and restraint in agitated residents, despite their negative consequences. - the concept of person-centered care is a holistic approach to dementia care and was developed by kitwood as a response to the biomedical model of caring. person- centered care is characterized by acknowledgement of the individual as a person that can still experience life and make choices and the focus on what a person can do, rather than the abilities that are lost. lack of understanding the experiences residents with dementia have, may lead to agitation and other problem behaviours and misinterpretation of their needs. understanding the underlying mechanisms and risk factors leading to agitation in nursing homes, is therefore crucial to possibly prevent, treat and reduce the severity of agitation and thus, possibly prevent inappropriate use of psychotropic drugs and restraint. based on current literature, factors related to the cause of agitation may be presented in three major themes; ) causes in the disease itself, ) causes due to unmet needs, and ) causes in the physical or social environment. the cause of the behaviour will often be a combination of the three. . . . . understanding agitation due to causes in the disease itself as outlined in . . ., cognition and communication skills are impaired in persons with dementia, thus their ability to communicate their needs are impaired as the disease progresses. the reduction in communicative abilities creates physical and emotional barriers that represent challenges for family and care staff, and leads to frustration, fear and agitation in the resident not being able to express himself. assessment of the resident abilities to communicate as well as good communication skills in care staff, are important factors in care, treatment and interaction with residents with dementia. in addition, brain changes related to the disease itself as well as genetic factors may contribute to the development of agitation. for example, pathological lesions in the orbitofrontal cortex have been found to be associated with agitation scores in alzheimer’s disease and both serotonergic, cholinergic and dopaminergic changes have been reported to be related to agitation. however, the studies are few and based on small and selected samples, and thus the findings have been inconsistent. our understanding of the morphological and chemical underpinnings of agitation and other bpsd is still incomplete. . . . . understanding agitation due to unmet needs the need-based dementia-compromised behaviour model, conceptualizes problem behaviours as attempts to communicate unmet needs, that if responded to appropriately, will enhance quality of life. in the need-driven dementia- compromised behavior model (ndb) behavioural symptoms are considered as need or goal of the individual with behaviour, rather than “disruptive” or “disturbing”. the ndb model has challenged the common view that dementia-related behaviours are simply part of the disease process. the ndb model reflects the interaction between the relatively stable background factors, fixed unchangeable factors (e.g., neurological factors, cognitive abilities, health status including physical functional abilities, and psychosocial including premorbid personality) with more changeable proximal factors (e.g, physiological and psychological need states and qualities of the physical and social environment). the fixed factors shape more enduring patterns of behaviour, while proximal factors may induce a need state. the interplay of these factors produces need-driven behaviour, the most integrated response a person can make given the limitations imposed by the dementia, strengths preserved from abilities and premorbid personality, and the constraints or supports offered by the environment. , . . . . understanding agitation due to causes in the physical or social environment the physical environment, including the setting, access and sensory properties, has a major impact on the quality of life for residents with dementia; they spend most of their time within one building and are limited in the range of environment that they experience. everyday activities and environment are central for well-being, and technology and design could support or add to the problems faced by a person who is experiencing cognitive decline. investigations on how building design impact on quality of life of people with dementia care showed poorer quality of life in buildings that prioritise safety and health, whereas buildings that supported activity, gave people control of their environment and provided good links with the community, had positive association with well-being. as the functional capacity declines in the resident with dementia, the ability to deal with environmental demands and pressure declines as well and leaves the resident highly responsive and vulnerable to the environment. according to the ndb model, , environmental pressure occurs when the environment demands more from the individual than he or she can handle. in this model, individuals with cognitive impairments exhibit three levels of behaviours related to the environment: baseline, anxious and dysfunctional. baseline behaviours include awareness of the surroundings and the ability to communicate in some way. when the environment produces more demands than the individual can process, anxiety may occur. if the anxiety is not dealt with, it might cross the stress threshold and dysfunctional behaviour occurs. with worsening dementia the stress threshold is lowered and anxious and dysfunctional behaviours increase, and in turn decreasing the stress threshold further. when the environment produces too many stressors or no opportunities to relax or avoid averse stimuli, the stress threshold is exceeded, dysfunctional behaviour manifested and the individual is unable to return to baseline behaviour. from this perspective, identifying and adjusting potential triggers in the environment, may improve behaviour management and reduce the stressors causing agitation. . . management of agitation treatment and care for residents with dementia and agitation beyond minimum health and safety needs are complex tasks, and require different approaches and multiple perspectives: the complexity of cognitive, emotional, physical and behavioural disturbance, skills and understanding of the individual, the personality and personal history of the resident, his/her needs and interaction with organizational and psychosocial factors and, the care staff - resident interaction and relations on all levels (i.e. family, friends, other residents). management of agitation in residents with dementia is mainly grouped into psychosocial and pharmacological treatment, and often a combination of the two. . . . psychosocial treatment psychosocial treatment or intervention focuses on the individual and the environment. it is a treatment approach based on the knowledge of the individual, his needs and capacities, as for example described in the ndb-model. the aim of the intervention on an individual level is to engage the resident in meaningful activities, tailored to each resident individual need in specific, time limited situations. another important aim of psychosocial treatment is to create a more supporting and adequate environment as a whole and to increase care staff knowledge in dementia care. successful treatment of agitation using psychosocial interventions is associated with improved quality of life for residents, - and reduced carer burden, although there is still a need for systematic clinical trials to support this. several systematic reviews have been performed to rate the effectiveness of psychosocial treatment. livingston et.al., identified a total of , studies and only satisfied the inclusion criteria for the review. in another review, aylward et.al., tested psychosocial interventions against the rigorous standards designed by experts in the field. of relevant studies they found only three randomized controlled trials and six single-case studies that met inclusion criteria. still, emerging evidence confirms that a variety of psychosocial interventions can improve agitation, , such as aroma therapy, structured psychosocial interventions, snoezelen and recreation therapy. therapeutic, recreational activities have shown promise as management strategies for need-driven behaviours. they are particularly useful during periods of unoccupied time, which constitute a great portion of nursing home residents’ day and contribute to need-driven behaviours. therapeutic recreational activities have been prescribed to promote enjoyment and attain a specific goal or objective such as improvement in physical or behavioural functioning. behavioural management techniques centred on individual residents’ behaviour were generally successful. other research offers some support, although evidence is insufficient for use of validation therapy (resolve conflicts by validating expression of feelings), pet therapy, music therapy, and bright light therapy. psychosocial interventions are targeting at improving quality of life, require time, skill and effort to implement. this initial investment may discourage some from incorporating these interventions into their practise. however, the benefits of psychosocial interventions may be more clinically significant and long lasting than pharmacological treatment, and avoid potential complications associated with drug interactions and side effects. the potent role of cognitive and functional status on engagement of persons with dementia underscores the importance of tailoring activities to nursing home residents’ needs. . . . pharmacological treatment pharmacological agents for the treatment of agitation in residents with dementia, include antipsychotic drugs, antidepressants, mood stabilizers, anxiolytics and antidementia drugs. antidepressants and cognitive enhancers are often used to treat depression and agitation, and a significant effect of antidepressant on depression in dementia has been found. early encouraging studies using mood stabilizers have not been confirmed, and there is currently little evidence to support the use of these drugs for bpsd. similar, there is little evidence that treatment with anxiolytics such as benzodiazepines, are useful beyond short-term and intermittent use. modest beneficial impact of cholinesterase inhibitors has been found, as well as encouraging studies with memantine. the most common pharmacological treatment of bpsd and agitation is antipsychotic medication. a significant but modest advantage of typical antipsychotics such as thioridazine, promazine and haloperidol has been reported. the most comprehensive evidence pertains to haloperidol, indicating a significant improvement in symptoms of aggression compared to placebo, but no significant improvement in other symptoms of agitation, and more modest improvements in psychotic symtpoms. there is very little clinical trial evidence pertaining to other typical antipsychotics for the treatment of agitation, aggression or psychosis. atypical antipsychotic, such as risperidone and olanzapine, are associated with some overall improvement of behavioural symptoms. risperidone is also associated with improvement of aggression, with a more modest benefit for psychosis but no evidence of treatment benefits for non-aggressive agitation. , the adverse effects of typical antipsychotics in patients with ad include sedation, parkinsonism, dystonia, tardive dyskinesia, - and cerebrovascular adverse events (including stroke). , a recent uk prospective long-term study showed that elderly residents in nursing homes who had taken neuroleptics were twice as likely to die during the study period compared to those who did not. until , typical antipsychotics such as thioridazine, promazine and haloperidol were all widely used in the clinic, but prescribing practice has changed following cardiac safety concerns related to thioridazine. despite the increasing safety concerns, there have however been only very modest changes in the overall prescription rates, although atypical antipsychotics are now more widely prescribed than typical agents in most countries. however, there are some indications that the use of antipsychotics has decreased in norway, and that the use of antidepressant has increased. the modest benefits of short-term therapy and the very limited evidence of ongoing treatment benefits need to be balanced against the adverse events. reflecting this, best practice guidelines now highlight that the prescription of antipsychotics for ad patients should be restricted to people with severe symptoms causing risk or extreme distress that have not responded to other measures, and that treatment should only be continued beyond weeks in exceptional circumstances and after psychosocial intervention. . . . treatment approaches in clinical practise the different types of agitated behaviours have different etiologies as previously outlined, and thus require different approaches. an accurate description of the behaviour as an important first step in the treatment process. based on this description the next step would be to understand the etiology of the behaviour. persons with dementia often experience unmet needs because they lack the internal and external resources needed to meet these needs. proximal factors in the ndb model include elements of the physical and social environment, therefore when the etiologic factors of behaviours are identified the next step is to correct those in the environment that are amenable to change. the background factors are less likely to be changed, but represent a profile of strengths, weaknesses and usual coping style, that can be used to tailor individualized interventions to these personal characteristics. the decisions on treatment intervention in each individual resident should be based on the diagnosis as well as cognitive functioning, physical health and strength, flexibility as well as leisure history and style of interest. for example a resident with agitated behaviour such as restlessness, and severe cognitive impairment, who is able to ambulate fully without assistance, and with a former leisure interest of mountain hiking and a preference for solitude, could be prescribed a walking programme in a safe environment, emphasizing his need for solitude. finally, if the agitation remains, and there is a high level of distress and a high risk for injury, psychotropic drugs should be considered. the first step should be use of antidementia drug, due to the safety profile and potential benefit of cognition. if necessary, symptomatic psychotropic treatment can be considered. to summarise, the literature describes three important steps to identify the optimal psychosocial treatment of agitation; ) accurate description and understanding of the etiology of the behaviour ) correcting factors in the pshychosocial environment that may lead to the behaviour ) identifying need-driven behaviour. this process highly depends on a) an individual level, that each individual nurse’s knowledge about the complex situation of an individual with dementia and her ability to view both the general and the special circumstances concerning each resident in a accurate way, and b) a group level, that the nurses as a group hold the same knowledge about the resident and are able to, as a group, conduct the proper care towards each individual resident, and c) an organizational level, that the organization as a whole supports and are aligned with the need for individual care of each resident with dementia. this again depends on each individual care staff’s knowledge and time to reflect upon each individual resident’s situation on each level by ) viewing the situation as it is in the present ) consciousness and consequences of the measures taken in the present ) consequences for future care and situation of each individual resident. all three levels and ways of viewing the situation are based entirely on the relation between the care staff and the resident and their ability to communicate. this understanding is critical for the outcome of the use of individualized interventions of resident with dementia. the resident relation on all levels; such as relations to family, other residents, and the care staff –resident interaction and communication, is the core point in targeted treatment and individualized, person-centered care. . . . care staff – resident communication care staff communication with residents can precipitate problem behaviours and recognizing the role of communication in problem behaviours and the link between them, are therefore important factors in understanding and reducing problem behaviour and agitation. in particular “elderspeak” (infantilizing communication) is used extensively by care staff and is perceived as patronizing and can precipitate communication breakdown and problem behaviours for cognitively intact elders. , elderspeak features simplistic vocabulary and grammar, inappropriate intimate terms (“that’s my boy”, “good girl”) use of collective (plural) pronouns (“why don’t we go to bed?”) and tag questions (“you want to shower now, don’t you?). elderspeak derives from stereotypical views of older adults as less competent than younger adults and cognitively intact older adults have negative perceptions of elderspeak. in residents with dementia, elderspeak may be especially threatening to the maintenance of self-concept and personhood they are struggling to maintain, and which are maintained through interaction with other people. research has demonstrated that elderspeak are used especially during care providing adl, and is related to resident resistance to care, which is known to involve use of restraint as well (see chapter . . . for further details). similar, ward et.al. studied the patterns of communication in residential care and found that the interaction with the resident followed the same routine, using the same words, although the tasks and situation varied, labelled as “care-speak”. recognizing the role of communication, and performing targeted interventions to improve care staff communication have been shown to be successful in improving behaviour management in dementia care , and may contribute to modification of the proximal factors in the ndb-model as outlined in . . . . . . . care staff – resident interaction the interpretation of each situation is depending on the persons involved; care staff and resident, their relation and interaction as well as psychosocial and organizational factors. in each interaction, despite meaningful tools and approaches, as previously outlined, there is a unique meeting between care staff and resident. the outcome of this interaction also depends on the understanding there and then, the interpretation of each situation and each care staff’s ability to process this. in clinical experience, the decision making is for a great deal placed in the hands of those closest to the resident; the direct care staff, which has a great influence on decisions regarding treatment and care such as use of restraint and need for medication. the care staff – resident relation and the decision making process (fig. ), are therefore of great importance and focus of the intervention in this thesis. fig. the decision making process a proper understanding of agitation in dementia to provide targeted treatment and person-centered care is an important way to reduce the use of restraint. . use of restraint in resident with dementia in nursing homes caring for residents with dementia in nursing homes involves in many cases use of restraint to protect the resident from harm. in norway, use of restraint towards person lacking the competency to make medical treatment decision, is now (from january st ) regulated by a new chapter a the patients’ rights act (pasientrettighetsloven). when this study took place, there was no regulation of the use of restraint in nursing homes and the new regulation will not be further outlined here. . . definitions restraint may be defined as any limitation on a persons freedom of movement, more specifically as physical restraint (belts or other fixing to bed, belts or other fixing to chair, locked in a room), electronical surveillance (devices on residents that automatically lock the door, devices on residents that alarm the staff, devices to track residents, devices that sound when a resident leave the bed), force or pressure in medical examination or treatment (mixing drugs in food or beverages, use of force to perform examination or treatment), force or pressure in adl (holding of hands, legs or head for washing or dressing/undressing, showering or bathing against the residents’ verbal or physical resistance, forcing the resident to the bathroom, feeding a resident against his/her will). in this study, use of restraint have been classified into two groups; structural and interactional restraint; structural restraints are measures of restraint aiming at protecting the resident through structural measures. structural restraint is outside the treatment and care giving activity, such as locked doors on the ward, electronical surveillance and bedrails. interactional restraints are measures of restraint aiming at treatment and care for the resident through care giving activity. interactional restraint are within the care staff – resident relation, the treatment and care giving activity, such as force or pressure in medical examination or treatment, and force or pressure in adl, as illustrated in fig. ; fig. situation: use of restraint . . frequency and causes studies shows that people in nursing homes with cognitive impairment and high dependency, are most likely to be restrained physically. , in a systematic review on reasons for restraining residents, agitation-related reasons for restraint use were reported in % of the studies. four main groups of reasons for using restraint were identified ) staff and organisation-oriented reasons (i.e. reducing legal liability, compensate for understaffing, enable work schedules to be completed), ) social group-oriented reasons (i.e. preventing interference with other clients, maintaining peace and harmony in the working environment), ) treatment-oriented reasons (i.e. protection of medical devices used in the treatment) and ) resident-oriented reasons (i.e. safety of the resident, prevention of fall). clearly, some of these reasons are inappropriate reasons for using physical restraint towards residents with dementia. one of the most commonly identified reasons for restraining residents, is the prevention of falls or fall-related injury. the aim is to prevent harm. however, this is contradicted by other studies, reporting that decrease in use of physical restraint, did not increase falls or falls-related injuries. in a systematic review on adverse effects on physical restraint increased risk of death, increased agitation, cognitive decline, reduced social behaviour and reduced mobility were found in nursing home residents being exposed to physical restraint. it seems likely that use of physical restraint in residents with dementia may in some cases be an easy solution, evident by the many staff related reasons that were identified, and is not well enough justified considering the adverse effects. kirkevold and his colleagues found that the strongest correlate to use of restraint were degree of dementia, dysfunction in adl and aggressive behaviour. the same group conducted a large survey in norway consisting of wards and residents (corresponding to % of all residents in institutions for elderly in norway), and found that . % of the wards reported one or more types of the restraints; physical restraint, electronical surveillance, force or pressure in medical examination or treatment, force or pressure in adl during the last seven days. the most frequently use of restraint was related to adl ( . %), followed by medical treatment ( . %) and physical restraint ( . %). use of restraint related to force or pressure in adl, is also described as resistiveness to care. , this can make individuals with dementia unmanageable at home, untreatable in nursing homes, interfere with the provision of necessary care and lead to use of restraint within the care staff - resident relation; interactional restraint. when residents resist care, this is often carried through by care staff, due to the assumption that the resident ‘does not know his own good’. these situations can provoke aggression in the resident, and are often described as the resident exhibiting problem behaviour and being aggressive, rather than resisting or disagreeing to care, or a reaction to the use of force or restraint related to adl. use of restraint is the use of force to make someone do something they are resisting, and towards a person lacking competency, it should be believed necessary to prevent harm and maintain health, be proportional to the likelihood and seriousness of harm and should be in the person’s best interest. the competency to make medical treatment decision is a fundamental aspect of personal autonomy, and refers to the individual’s cognitive and emotional capacity to accept a proposed treatment, to refuse treatment, or to select among treatment alternatives. loss of competence is an inevitable consequence of neurodegenerative dementias. as memory, language and judgment abilities erode, persons with dementia loose the capacity to make medical health care decisions. an assessment that someone lacks competency, has major implications; it gives care staff influence over the person, it also gives care staff a duty to act on behalf of this person in his best interest, and it could potentially be abused. for someone to lack competency, there must be a disturbance in the functioning of the brain, resulting in the ability to retain, use or weight information relevant to a decision or to communicate a choice. assessment of capacity includes a status approach, where a person having reached a diagnostic threshold is described as lacking capacity for all decisions or a functional approach, where capacity needs to be reassessed for all decisions, particularly if the impairment fluctuate over time. finally, someone could lack competency in some areas, but not in others. this means that for someone living with dementia in a nursing home, having reached a diagnostic threshold and with loss of competency as a status they could still have the competency to make decisions with regards to for example adl. . organizational and psychosocial work environment in nursing homes, health and well-being in care staff the increased number of residents with dementia will lead to a marked increase in the need for care staff in nursing homes. the turn over rate among care staff in elderly care is high, and negatively affects continuity of care and establishment of personal relationship between care staff and residents, both of which are important determinants of quality of care. by year , a shortage of registered nurses is expected world wide, and the number is forecasted to be % below the projected requirements. work environment and job stress have been implicated in the nursing shortage. a shortage in health care workers in general, towards year is forecasted in norway as well. the estimated shortage of health care workers is mainly due to an increased demand due to the aging of the society. health and well-being in care staff, as well as high quality organizational and psychosocial environmental factors are important factors in achieving the goal of personal control, dignity and quality of life in residents with dementia and to provide comprehensive, targeted treatment and individualized, person-centred care. . . organizational and psychosocial environment organizational and psychosocial factors, including physical environment, contributes to health and well being of individuals and groups in an organization and dissatisfying psychosocial working conditions may lead to psychological and physiological distress. karasek & theorell’s demand-control model is one of the most influential and widely used models in the analyses of potential psychosocial work factors for health. four distinctly different kinds of psychosocial work experience are generated by the interactions of high and low levels of job demand and decision latitude. the most adverse reactions of psychological strain occur when the job demand is high and the decision latitude or control of work tasks, are low. this model may be a simplification of the complex work life, and when related to the complexity of caring for residents with dementia it might even be an oversimplification. nevertheless, the model is useful as a guideline, when considering the organizational and psychosocial environment in nursing homes. in this thesis, the emphasise is on organizational and psychosocial factors as described in the qpsnordic questionnaire. this instrument is both an intervention and survey tool, and is developed based on the nordic countries long tradition on improving the psychological and social work environment. it was developed by a multidisciplinary group of experts in the fields, based on the factors’ relevance and importance for work, health and well-being and main theories of association between work and health, such as the demand – control model. the conceptual background of the psychological and social factors at work, are outlined below (see also chapter . . ). job demands job demands are defined as all those occurrences, circumstances and conditions in the workplace, which require the individual to act or respond. these can be viewed differently from one individual to another and thus, the job demand is a subjective perception. there are different demands on workers; quantitative demands (amount of work, time pressure), decisional demands (demands on quick and often complex decisions) and learning demands. these are each found to be related to musculoskeletal problems and cardiovascular diseases, in particular when high job demands are combined with low job control. role expectations the most frequently studied stressors are related to role conflict and role ambiguity and numerous studies have demonstrated that they cause substantial problems in the individual. role conflict occurs when role expectations are in conflict; intra-sender conflict (conflicting messages from one person), inter-sender conflict (conflicting messages from two or more persons) and inter-role conflict when one person has two or more conflicting roles. role ambiguity refers to a situation where role expectations are unclear and unknown, information may be confusing, success criteria are unclear and expectations from other people are unclear or there may be interpersonal conflicts. control at work control at work relates to the person’s autonomy and participation in planning and decision-making, and the subject’s perceived freedom to make decision about his or her work. this is one aspect of the demand-control model showing that adverse health effects occurs when a worker is exposed to a combination of high demands and low control. predictability at work predictability refers to the possibility of developing expectancies of the work environments, and anticipating future development and demands. unpredictable environment, impose demands on the individual beyond those of job demands and other challenges. the individual has to stay alert, gather information and be ready to meet changes, which may or may not occur. over time this can be straining and affect the workers health if sustained. mastery of work mastery of work, referring to the subject’s perception of the result of his or her behaviour, i.e. production of successful outcome, has received less attention in occupational studies even though it may have major impact on health and well being. the subject’s perception of mastery includes the degree of consonance between demand and performance and the quality of feedback or information the subjects receive about his or her performance. social interaction social interaction and support include support from superior, support from co- workers and support from relatives and friends. most studies show positive association between social support and health at work, and support form superior seems to have an greater impact on the workers health than support form peers. leadership quality of leadership was defined through supporting, fair and empowering leadership, which has been reported as a principal element of perceived social work environment. research has demonstrated a strong relationship between leadership and health and well-being of the employees and that support form the supervisor may reduce stress reactions in the employee. organizational culture organizational culture theories regard an organization as a culture in itself, and the history of the organization, including its important persons and critical events, is often regarded as the foundation of the culture. commitment to organization the concept of organizational commitment focuses on the individual’s identification, loyalty, psychological contract, perceived organizational justice and involvement in the organization. these concepts may interact with turn-over and the individual’s intent to stay with the organization. perception of group work a work group or team refers to a group of individuals who share a common goal or work task and studies on relations between individual well-being and various group process measures have usually found them positive. work motivation work motivation refers to the strengths of behaviour-inducing factors towards a particular job and is used to account for the nature and intensity of the individuals work-oriented behaviour. general attitudes towards work can be characterized by two contrasting motivations; internal (realization of one’s potentialities for continued self-development) and instrumental (personal dispositions and expectations related to occupational and demographic background). . . health and well-being in care staff over the past three decades, there has been a growing belief in all sectors of employment and in government that the experience of stress at work has undesirable consequences for health and well-being of the employees and the organization, and that occupational stress levels are rising. high levels of stress in care staff are commonly associated with working with more cognitively impaired nursing home residents. , higher psychological demand has been associated with health complaints, and musculoskeletal diseases are the most frequently reported cause for sick leave. . . . stress stress includes physical, emotional, cognitive and social or interpersonal aspects and is generally regarded as a “state arising from a mismatch between a threat and the available resources for the individual”. levine and ursin defined four main subscales of stress; ) stress stimuli, ) stress experience, ) stress response and ) feedback from the stress response. stimuli are filtered by the brain and whether it is perceived as pleasant or threatening depends on each individual’s experience of the situation. according to levine and ursin, emotional “loads” are the most frequently reported stress stimuli. if the stimuli is perceived as threatening, humans report this as stress and leads to a response, or “arousal” characterized by increased wakefulness in the brain and increased activity in the body (increased hearth rate, metabolism etc). finally, the feedback from the stress response, from the peripheral changes back to the brain, may add to the feeling of being stressed. a necessary condition for coping to occur is that there is information about the relationship between responses and their results and this feedback may be an important element to reduce the stress arousal response, and the somatic consequences of prolonged stress. the control term is used in the previously mentioned demand – control model, which demonstrates how a model based on the psychological demands of work, skill use and task control can predict a broad range of health and behavioural consequences of the structure of work. occupational stress levels are rising in the profession and evidence shows that three key factors of work stress occur in continuing care settings and predict burnout: quantitative overload, qualitative overload and qualitative underload. these components are of special importance to understand what causes job stress and how improvement processes in working life organizations are or might be initiated, planned and carried out. individuals with high demands and low control in the job situation, carry the highest risk of illness and disease, whereas low psychological demands and high levels of control carry the lowest risk. low demands and low control, high demands and high control, carry an average risk. the model also predicts working motivation, the ability to learn new behaviour patterns or solve new problems, which is most likely to occur when the challenges of the situation are roughly matched with the individual’s control over alternatives or skills in dealing with those challenges. . . . subjective health complaints subjective health complaints are normal physiological and psychological responses in healthy individuals, and not necessarily conditions where the individuals have approached the medical service for their discomfort. sensations and discomfort from different parts of the body are part of human nature, but stress and inability to cope with stress may sensitize this, and increase the health complaints. the most frequent source of long term sickness compensation and permanent inability to work seems to depend on subjective statements from the individual, particularly muscoleskeletal pain, often combined with mental disorders and conditions which are hard to define. , among the conditions which are hard to define we find a mixture of subjective complaints from the muscoleskeletal system, the gastrointestinal and urogenital system, and pseudoneurological complaints, like fatigue, tiredness, dizziness, vertigo and headaches. “subjective health complaints” was suggested as a neutral descriptive term for these conditions. . aims of the study the overall objective of this thesis is to explore the frequency, correlates and consequences of agitation in nursing home residents with dementia, and whether agitation and quality of care as measured by use of restraint and antipsychotic drugs, can be improved by means of an intervention consisting of staff training and support. spesific aims: paper : to investigate whether staff training could reduce use of restraint towards demented residents and reduce agitation in nursing homes. paper : to estimate the prevalence and correlates of agitation in residents with dementia in norwegian nursing homes. paper : to compare the severity of agitation and psychotropic drug use in nursing homes with different organizations and structures in three different countries. paper : to investigate the association of organizational and psychosocial environment, care staff and resident factors in nursing homes with health and well being in care staff. paper : to explore whether staff training could reduce agitation and improve quality of care in nursing home residents with dementia by reducing the use of restraint and antipsychotic drugs. . methods . design the project took place in rogaland county, norway between - . different designs were employed, including observational designs such as cross-sectional surveys ( , and ), and an international, multi-centre comparative analysis (paper ) and experimental designs, ie cluster-randomized controlled trials (paper and ). . . cross-sectional study papers , , and were descriptive, cross-sectional studies to analyse the prevalence of agitation in nursing-home residents, and to study correlates of health and well- being in care staff. in paper , baseline data from the second intervention study were used to compare the relationship between the phenomena of agitation and psychotropic drug use in nursing homes with different organizations and structures in three different countries and explore clinical and demographic correlates of agitation. . . clinical trial in the first trial (paper ) the nursing homes were randomly assigned to intervention or control condition, homes in each group, after stratification for size. in the second study (paper ) seven nursing homes were assessed for eligibility. three homes refused to participate, and four were included in the study and matched according to size and accreditation status. in the randomization process, one small and one larger home were allocated to either intervention or the control condition (treatment as usual). in the first study, data were collected immediately before and after the -month intervention period by a research nurse blinded for study hypothesis and treatment allocation. in the second study, data were collected immediately before and after the -month intervention period by a research nurse blinded for study hypothesis and to treatment allocation, followed by a second follow-up assessment months later. . . . the educational intervention; relation related care (rrc) basically the same educational intervention; relation related care (rrc) was used in both the first and second trial. the method and manual used in the first study were modified and further developed for the second study, where the seminar for all care staff was expanded by one day. rrc is developed by the educators (it & ama), for care staff in nursing homes to understand dementia, understand and improve agitation, reduce or prevent use of restraint, improve quality of care and thus, improve quality of life in residents with dementia. the complexity of caring for residents with dementia, the experience of this escalating complexity, the fact that complex systems interact with other systems, in a way that can not be fully solved, combined with high job demands may lead to frustration and experience of stress in care staff. this may negatively influence the quality of the care provided, and increase the risk for agitation, in particular in residents with more severe dementia. knowledge about these complex systems is therefore important, since it may provide information on how to improve quality of life both for residents and staff, and has important implications for the health care system. through understanding the interactions between the complex systems, rather than focusing on separate agents, new valuable knowledge may be produced and interactions between the resident and care staff improved. this may lead to decreased agitation and use of restraint in residents with dementia, and increased health and well being in care staff. to further expand this complexity, care staff is trained professionally to use their knowledge and skills to solve a problem. care staff often approaches the situation through intellect and a problem-solving approach whereas the resident suffering from cognitive decline approaches the situation more through senses and feelings. to meet a person with impaired cognition and with disturbed emotions, such as agitation, emotional skills in addition to cognitive skills are needed. in addition, there are further challenges in dementia care, such as understanding what the resident with impaired cognition is communicating, understanding their ability and need to communicate and to communicate back in a way the resident can relate to without mitigating their right to participate in their activity of daily living. understanding agitation in dementia can provide key targets for treatment and care, which may lead to reduced agitation and use of restraint. , “somebody got to do something” in the nursing home environment this phrase often refers to a challenging care staff – resident interactional situation, including agitated behaviour and use of restraint. the demand is often upon the leader or physician to solve the situation, for example by increasing the care staff – resident ratio, move the resident to another unit, or prescribe antipsychotics. the phrase is often heard when the care staff feels they have tried “everything” and there is nothing more they can do. this clinical experience as well as the complexity of care was considered in the development of the rrc - intervention, aiming at “doing something” directly in the care staff – resident interaction, including both the structure and the content of the situation. a key assumption underlying the intervention is that by increasing the understanding of the total complexity of the situation, targeted treatment can be implemented, leading to improved care for people with dementia. this will translate into prevention or reduction of severity of agitation and use of restraint and antipsychotic drugs. one key understanding underlying this assumption, is the necessity to address this complexity towards the group of care staff as a whole (all care staff and leaders included and at the same time), and to continuously address the issue through guidance groups. the decision-making process in caring is central in the rrc. it involves empowering care staff in making the proper assessment, understanding and relating to the care staff – resident situation and provide targeted treatment and individualized, person- centered care, through increasing their ability to obtain information, seeing the range of options, having positive thinking of their own skills and ability to learn new skills, both on their own and as a group and to stay involved in the changes and growth process which is necessary and never-ending in the process of caring. aim of the programme: “every decision to use restraint towards residents with dementia in nursing homes, should be carefully considered, based on each residents individual need and situation and in his or her best interest”. rrc consists of two major elements: a two-day seminar and group guidance (table , in appendix) and is structured in to three main factors; a) predisposing, b) enabling factors and c) reinforcing factors. structure the intervention was given to one ward at the time. we included all care staff in the intervention including care staff, leaders, assistants, domestic help and so forth. care staff involved in the same ward, participated in the seminar, at the same time. it is of great importance that the entire group of care staff is involved in the same educational process in order to have a mutual understanding of the situation, make changes everybody can relate to and maintain after the intervention, and most importantly, to ensure that the resident receive the same treatment, regardless of which care staff are interacting with the resident. leaders on all level were included in the intervention, to facilitate the implementation of new skills, treatment guidelines i.e., and most importantly to follow up on the day-to-day care. the educators were experienced registered nurses in the field, and clinical experience is necessary to relate to the care staff’s day-to-day situation, combined with theoretical knowledge to provide new knowledge and a different perspective on the situation. the educators were not part of the day-to-day situation of the ward and this distance is necessary to understand the situation and provide an outside perspective, supporting the care staff in targeted treatment and individual based care. the seminar took place outside the nursing home in a two day retreat, including spending the evening and night together. it is important that care staff have opportunity to spend time together as a group and to look in on their mutual situation from another perspective; outside their environment and day-to-day situation. the group guidance was given once a month for six months and started immediately after the two-day seminar. content the content of the seminar and group guidance is outlined in table (appendix) with emphasize on predisposing, enabling and reinforcing factors. these three factors are part of a classification system originally developed by green et.al. to examine educational interventions, sorted by factors relevant to behavioural change in health promotion. a combination of these factors is necessary to change the knowledge, attitudes and practises of care staff on a long-term basis and to ensure that the resident’s individual needs and need for treatment are met. predisposing factors (dissemination of information; i.e. lectures, written), involves primarily the communication of the knowledge designed to modify the attitudes and interventions of the care staff as individuals, as a group and as an organization ( i.e. lectures, written information). as seen in fig. , the seminar included the whole nursing home system including care staff, resident, relations on all levels and the organization as a whole. this represent the basis of which the decision; “to restrain or refrain?” is made. at the start of the seminar, each care staff was provided with a manual, with the content of the seminar. besides lectures the seminar included role play, and presentation of clinical situations including both positive and negative aspects of the complexity of care. this provided a learning environment, enabling the care staff to look at their own situation as is, and in a dialog with the educators. this provided in turn, a mutual understanding in the group, which was continued in the group guidance after the seminar. enabling factors (resources to implement new skills; i.e. treatment guidelines) includes resources in the day-to-day situation, on the ward, to implement new skills and interventions towards the resident (resources to implement new skills; i.e. treatment guidelines). the group guidance was an important enabling factor, including tools such as ways of eliciting resident history and personality and care staff diary to turn bits and pieces of knowledge into a whole picture of joint knowledge of the resident. when a new intervention was developed, it was of great importance that the leader was involved both when the decision was made and to ensure that the resident was given this intervention in the day-to-day care, regardless of which care staff was on duty. reinforcing factors (reinforcing new skills; i.e. feedback, peer support). throughout the group guidance process the care staff had the opportunity to reflect on the process, to be supported and given feedback by the educators as well as the peers. this way of reflecting and the use of the tools were repeated in the group guidance sessions on all care staff – resident interactions and reported in the group to be transferred to other residents with similar situations. in the rrc education and training program we defined restraint as outlined in . . . . subjects in paper , four public nursing and residential homes in stavanger, norway participated. they were randomly assigned to the treatment intervention or control condition, after stratification for size. residents in the intervention group, and residents in the control group were included. the two groups were similar with respect to age, severity of dementia, gender distribution and proportion of subjects using medication for physical disease. for papers - , seven nursing homes in rogaland county, chosen on the basis of being representative for the total nursing home population in terms of size, organization and staff – resident ratio, were invited. they were all public nursing homes. four nursing homes agreed to participate and residents and care staff from thirteen dementia wards in these nursing homes, were included. these four nursing homes were funded by the councils and are similar to other nursing homes in this region. data from all residents ( - residents in each ward) were included. residents were male and were female, with a mean (sd) age of . ( . ). . % had dementia, and . % had a score of or , indicating severe dementia. in addition, care staff from the same wards as the resident was included. there were male and female of care staff, with a mean (sd) age of . ( . ). . nursing home environment in addition to the norwegian homes listed above, nursing homes from austria and uk were included in paper . the nursing facility in austria is situated in a small town in which two nursing homes exist, and one included in the study. this nursing home was chosen for an intervention study, to be able to understand the influence of staff training and stimulation therapy for residents with dementia. in england, nursing homes were recruited; four each in london, newcastle, and oxford. eligible homes were those registered to accept elderly cognitively impaired people and with a minimum of % of residents taking psychotropic drugs. they reflected a typical range of care provision for people with dementia in the uk and included private and managed facilities. . data collection the administration of the outcome measures and drug recording related to the resident, was performed by a skilled research nurse, specifically trained to do the standardized interview and blind to the intervention condition and uninformed as to the objective and design of the study. care staff (registered nurses) directly involved with the day-to-day care for the resident, were interviewed. demographic data (age and gender) were collected from the residents’ record. the information on the frequency and dose of psychotropic drug usage was collected from the medical charts and categorized according to atc as psychotropic drugs, antidepressants, or sedatives/anxiolytics. in addition, data from residents in nursing homes in austria and uk, included in paper , had been collected for other studies during the years to and were aggregated for analytic purposes. outcome measures related to the care staff were obtained through a survey, where questionnaires were distributed to all care staff. the response rate was %. . . assessment scales standardised and established measures were used to rate dementia. in paper , severity of dementia, was rated by clinical dementia rating scale (cdr) and agitation, was rated by brief agitation rating scale (bars). in paper - severity of dementia, was rated by fast. use of restraint was rated by a norwegian standardized interview (see below) in all papers. in addition, severity of dementia in paper was rated by the cdr in england, and the global deterioration scale (gds), in austria. the research nurse administered these instruments, during a comprehensive interview with the care staff with detailed knowledge of the residents. agitation two rating scales were used to score agitation: the bars (paper ) and cmai (papers - ). brief agitation rating scale (bars) represents a brief and effective method to assess the presence and severity of physically aggressive, physically non-aggressive, and verbally agitated behaviours in elderly nursing home residents developed as a subset of the cohen-mansfield agitation inventory (cmai). it is a -item measurement, each rated on -point scale ranging from =none to =often or continuous. cohen-mansfield agitation inventory – long form (cmai) was developed to systematically assess agitation and consists of agitated behaviours, each rated on a -point scale of frequency, ranging from “resident never manifests the behaviour” ( ) to resident “manifests behaviour several times an hour” ( ). of the items items are presented in four factors (cohen-mansfield ); i. aggressive behaviour ( items), ii. physically non-aggressive behaviour ( items), iii. verbally agitated behaviour ( items) and iv. hiding and hoarding ( items). the cmai was validated by the alzheimer's disease cooperative study instrumentation protocol and shows sensitivity to treatment effects and course of illness. the test- retest reliability of the cmai over month was good (r= . to . ). severity of dementia severity of dementia was rated using the functional assessment staging (fast), a procedure which describes a continuum of successive stages and sub stages from normality to most severe dementia of the ad type. the fast stages are derived from the global deterioration scale (gds) and the correlation between fast and gds, with proven validity as a measure has been observed to be . , demonstrating that fast is a reliable and valid measure of dementia severity. in paper , severity of dementia was rated by clinical dementia rating scale (cdr) in england and the global deterioration scale (gds) in austria. clinical dementia rating scale (cdr), is a procedure which characterizes six domains (memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care) of cognitive and functional performance applicable to alzheimer’s disease and related dementias. the cdr is a five point scale indicating the following levels of impairment/dementia; =normal, . =questionable dementia, =mild dementia, =moderate dementia, =severe dementia. the global deterioration scale (gds), is a procedure which provides caregivers an overview of the stages of cognitive function for those suffering from dementia, broken into seven different stages; stages - are the pre-dementia stages and stages - are the dementia stages. use of restraint frequency of use of and restraint was determined by a standardized interview where all use of restraint during the last seven days were recorded. the interview consists of items within four domains: physical restraint (belts or other fixing to bed, belts or other fixing to chair, locked in a room), (devices on residents that automatically lock the door, devices on residents that alarm the staff, devices to track residents, devices that sound when a resident leave the bed), electronic surveillance, force or pressure in medical examination or treatment (mixing drugs in food or beverages, use of force to perform examination or treatment), any force or pressure in adl (holding of hands, legs or head for washing or dressing/undressing, showering or bathing against the residents’ verbal or physical resistance, forcing the resident to the bathroom, feeding a resident against his/her will). . . care staff outcomes participating members of care staff for paper completed a range of questionnaires. three scales measured health and well being in care staff: perceived stress scale, psychological distress and subjective health complaints. general nordic questionnaire measured organizational and psychosocial factors for psychosocial and social factors at work. the cohen-mansfield agitation inventory – disruptive, measured agitation in resident as perceived by care staff. health and well-being in care staff perceived stress in care staff was measured by means of the perceived stress scale (pss). the pss is a -item scale, designed to assess appraisals of the extent to which one’s current life situation is unpredictable, uncontrollable and burdensome. respondent answer the pss by indicating on a -point likert-type scale, ranging from (never) to (very often), the frequency within the last month that they have experienced various stressful feelings, total sum of as the highest score. higher scores on this measure indicate greater levels of perceived stress and it is more likely the individual will perceive that environmental demands exceed their ability to cope. psychological distress was measured by a short version ( items) of the hopkins symptoms check list (hscl- ). this is a widely used instrument designed to measure psychological distress in population surveys. each item was rated on a scale of (not at all) to (extremely), during the past four weeks, total sum of as the highest score. the average score is calculated by dividing the total by number of items. a cut-off point of . is recommended as a valid indicator of psychological distress. subjective health complaints (shc) were measured by the ursin health inventory, consisting of items concerning subjective somatic and psychosocial complaints experienced during the last days. severity of each complaint is rated on a -point likert scale ( =none, =some, =much, =severe). each complaint is also scored for duration (number of days) during the last days. total max score = . the items in this study are grouped into subscales: musculoskeletal pain (headache, neck pain, arm pain, back pain, leg pain (maximum score= )), pseudo neurology symptoms (palpitation, dizziness (maximum score= )), gastrointestinal problems (stomach pain, stomach discomfort, ulcer and non-ulcer dyspepsia, nausea (maximum score= )), allergy (chest pain, breathing difficulties, asthma, eczema (maximum score= )) and flu (cold, coughing (maximum score= )). maximum total score is . organizational and psychosocial factors organizational and psychosocial factors were measured by general nordic questionnaire for psychosocial and social factors at work (qpsnordic). the questionnaire is designed to evaluate effects of interventions at the workplace and includes questions covering the following topics distributed in thirteen factors. eleven of these scales were included in this study: job demands, role expectations, control at work, predictability at work, mastery of work, social interactions, leadership, organizational culture, organizational commitment, perception of group work and work motivation. on a -point likert scale the respondents indicated from =very seldom or never to =very often or always, how relevant the question were for their situation. example: “do you have too much to do?” in addition to the established subscales, a total score was calculated by adding all items. agitation in resident as perceived by care staff agitation in resident as perceived by care staff was measured by the cohen-mansfield agitation inventory – disruptive (cmai). the questionnaire consists of the same agitated behaviours as the cmai – long form, each rated on a -point scale of frequency, ranging from resident never manifests the behaviour ( ) to resident manifests behaviour several times an hour ( ) during the previous two weeks. this version differs from the original cmai in that there in addition is a -point likert scale of disturbance ranging from = “not at all” to = “extremely”, where each staff member rated the perceived overall level of agitation on the ward during the previous two weeks. . ethical and legal considerations a large proportion of residents in nursing homes either lack or have reduced capacity to consent, requiring careful consideration. the design of this study did not involve the residents directly, but they and/or their family were informed about the study and that they could refuse participation at any stage of the study. data were anonymous to the researchers, each resident were given a code to their name, which was used in the standardized interview. this code was kept in a sealed envelope and opened by the care staff involved in the day-to-day care of the resident when the next interview took place. a written consent from the care staff was obtained through their participation in the study. they were informed that by participating, they also agreed to be a part of the study and that they could refuse participation at any stage of the study. their anonymity was ensured, and by returning the questionnaire in a sealed envelope directly to the researchers, they were also ensured that their answers would not in any way influence their work situation. the project has received formal approval from the regional committee for medical research ethics for western norway and the norwegian data inspectorate. in paper formal approvals from the ethical committees were obtained in the respective countries. . statistical methods variables were tested for violation of normality using the one-sample kolmogorov- smirnov test. baseline demographic and clinical variables with normal distribution were compared using student’s t-test and chi square tests. non-normally distributed data were compared using non-parametric tests such as mann-whitney u-test. associations between variables were analyzed using pearson correlation for normally distributed continuous or spearman test for non-normally distributed variables. multivariate analyses were used to control for potential confounders. in paper , linear regression analysis was used to analyze independent correlates of agitation using cmai score as the dependent variable. hierarchical multiple regression analyses were used to further analyze the associations of resident and care staff characteristics, using cmai scores and care staff characteristics as the independent variable and stress (pss, hscl and shc) as the dependent variable. cut-off points for determining the presence of multi co linearity were a tolerance value of less than . , or a vif value of above . in paper , comparisons between countries were made using one-way analysis of variance (anova) with scheffe post-hoc test and chi square tests. again, multivariate regression analyses were employed to explore factors contributing to the variance in the two outcome measures, agitation and use of psychotropic drugs. total cmai score (linear regression) and use of psychotropic (logistic regression) were used as dependent measures, with residents’ age, gender and dementia severity and drug use/cmai score (respectively) as independent factors. in paper , to analyse how change in cmai score differed between the intervention and control group, a repeated measures anova with group as between-subject factor and baseline, follow-up and second follow-up as within-subjects factor (the time factor) was conducted, using the cmai sum as dependent variable. the greenhouse- geisser correction for violation of the assumption of sphericity inherent in repeated measurement was used to correct the degrees of freedom. significant results were followed up with separate anovas for the control group and intervention group. all statistical analyses were done using spss versions , and . a p-value of < . was considered statistically significant. . results paper the effect of staff training on the use of restraint in dementia. a single-blind randomized controlled trial. in this first study, the level of agitation according to the bars score did not change in neither of the two groups, after completion of intervention. however, the proportion of restraint had declined with % in the treatment group, and increased with % in the control group. we found that the educational program significantly reduced the use of restraint, and we proposed that this imply improved quality of care of the demented resident. the reduction of use of restraint was found although the severity of agitation did not decline. paper prevalence and correlates of disruptive behaviour in patients in norwegian nursing homes. of a total of residents, . % had dementia, and . % had a fast score of or , indicating severe dementia. we found that . % of the residents with dementia exhibited at least one agitated behaviour at least weekly and . % several times a week. the six most common agitated behaviours were repetitious sentences or questions, complaining, cursing, pacing, negativism and general restlessness. a highly significant association between cmai and stage of dementia was found. paper nursing home structure and association with agitation and use of psychotropic drugs in nursing home residents in three countries: norway, austria and england subjects with dementia ( in austria, in england and in norway) were available for analyses. there were significant differences between the nursing home residents in the three countries regarding age, gender and dementia severity. in addition, there were structural differences, including the mean number of patients and staff/resident ratio. the level of agitation differed between countries, with higher mean scores in the austrian nursing home compared to uk and norwegian nursing homes. similarly, the use of psychotropic drugs differed significantly between the homes, with a higher proportion on antipsychotic drugs in uk and austrian compared to norwegian nursing homes. these differences were significant even after adjustment for dementia severity, age and gender, and also after including care staff – resident ratio in the model. paper health and well being in care staff and their relation to organizational and psychosocial factors, care staff and resident factors in nursing homes the main finding was that organizational and psychosocial factors, in particular those related to the organizational structure of the nursing home, were significantly associated with all three measures of health and well-being in care staff. in contrast, residents’ agitation was not significantly associated with any of the measures of health and well being in care staff. leadership, mastery and control of work were the three organizational and psychosocial factors, which significantly explained the variance in care staff health and well-being. paper the effect of staff training on agitation and use of restraint in nursing home residents with dementia: a single-blind randomized controlled trial the main findings of this study were that an educational intervention; relation related care (rrc), led to reduced severity of agitation and improved quality of care by reduced frequency of restraint. the improvement of agitation continued months after the completion of the intervention, indicating that sustained improvement of agitation can be achieved by means of staff training. in contrast, the reduction in restraint, which was evident by a much smaller increase in the intervention group compared to the control group, seemed to be short-lived, suggesting that continuous supervision is needed to achieve sustained reduction of the use of restraint. . discussion . findings in context the main findings in this thesis were a) that agitation was common in norwegian nursing homes (paper ), although less common than in nursing homes in uk and austria (paper ), b) that health and well-being in care staff were associated with organizational and psychosocial factors, in particular leadership and less with resident factors such as agitation (paper ), and c) that a novel intervention consisting of education and guidance of care staff was able to reduce use of restraint (paper and ) and agitation (paper ) in residents with dementia. . . agitation: frequency and context we found that . % of the residents with dementia exhibited at least one agitated behaviour at least weekly and . % several times a week (paper ). using the cohen-mansfield terminology, the six most common agitated behaviours were physically non-aggressive behaviours (repetitious sentences or questions, general restlessness and pacing) or verbally agitated behaviour (constant request for attention, complaining and negativism), whereas cursing was the only aggressive behaviour occurring in more than % of the residents with dementia at least once a week. three of the agitated, aggressive behaviours occurred in less than % of the residents with dementia at least once a week (kicking, pushing, tearing things), scratching were . %, hitting were . % and grabbing were . %. this is different from other studies, were a higher level of agitated and aggressive behaviours are found. , agitation was associated with severity of dementia and suggesting that with worsening cognition, the ability to communicate needs is impaired as well. lack of understanding of the experiences of residents with dementia can lead to misinterpretation of their needs, frustration, agitation and other problem behaviours. we did not find an association between agitation and age or gender. this is different from some other studies reporting higher prevalence of aggressive behaviour among men, , , and higher prevalence of verbally agitated behaviours among women and significant association between lower age and bpsd. a comparison of different studies indicates that agitation is less common in norwegian nursing homes than in other parts of the world. the figure below compares the mean total score on the cmai in this study (paper ) with findings from studies conducted in us, europe and canada and australia. the total score of cmai, mean (sd) in norway was . ( . ), which is lower than europe and canada with a mean score of . ( . ) united states with . ( . ) and australia with . ( . ) as seen in fig. . fig. . comparing cmai between countries however, differences in agitation based on findings from different studies may be due to a large number of potential methodological differences between studies, and thus a direct comparison between nursing home residents in different countries is required to analyze potential differences between countries. in paper , using the same agitation rating scale, we confirmed these preliminary observations. we found significant differences in mean agitation scores between nursing home residents in norway, austria and uk. these differences remained even after adjusting for differences in age, gender and dementia severity (paper ), thus supporting the hypothesis that the difference in agitation between the nursing homes in different countries is at least partly related to differences in the organization and structure of the nursing homes. for example, agitation was lowest in nursing homes with fewer residents per ward and with higher care staff - resident ratio. in the norwegian nursing homes the norw ay us eu aus tralia number of residents per unit was lower and the care staff - resident ratio higher than in the uk and the austrian home. this was associated with a lower agitation score than in the austrian home, while the difference between uk and norway was not significantly different. in addition, use of antipsychotic drugs was significantly lower in norway compared to homes in uk and austria, although use of antidepressants was higher in the norwegian homes. taken together, these findings suggest that lowering number of residents per unit and increasing the number of staff per resident may reduce both the level of agitation and the use of antipsychotic drugs in nursing home residents with dementia. however, the difference remained significant even after adjusting for the care staff – resident ratio, suggesting that other factors may contribute to the observed, relatively low prevalence of agitation in norwegian nursing homes. firstly, the level of agitation is related to clinical factors such as dementia severity. the availability of places and recruitment to nursing homes differ in different countries. this may markedly influence the clinical characteristics of the residents, including severity of dementia, and thus the frequency and severity of agitation. however, the differences between countries remained after adjusting for differences in age and dementia severity, suggesting that the differences in agitation are not related to differences in recruitment procedures related to nursing homes. secondly, drug treatment may influence the level of agitation. a substantial proportion in our study used psychotropic drugs. there were differences between the countries for all the major classes; antidepressants, anxiolytics, and antipsychotic drugs, and these differences may influence agitation and contribute to the observed differences. on the other hand, most studies suggest that psychotropic drugs have only a small effect on bpsd, , and differences in agitation remained after adjustment for differences in use of antipsychotic drugs, suggesting that differences in psychotropic drug use may not fully explain the observed differences in agitation. in addition to the factors mentioned above, it is possible that the culture change, focusing on the person and emphasising nursing home residents rights and quality of life (as described in p. - ), which has taken place in norwegian nursing home care during the last two decades may contribute to the relatively low frequency of agitation and aggression in our cohort. in a study of agitation in special care units, it was suggested that both the physical environment and the actions of the staff may have significant impact on agitation levels in long-term care settings for persons with dementia. ruths found that small dementia care units are beneficial for residents: they maintain their cognition and functional ability longer, they are more relaxed, and receive less antipsychotic drugs. the lower frequency of agitated behaviours suggests that the small size of the units in norwegian nursing homes, providing an opportunity to prevent or treat agitated behaviours with better and more targeted treatment and care, may have improved the quality of care. the increase in care staff and emphasize on care staff education may also improve the quality of care, and thus be beneficial for the resident, with a direct impact on agitation and quality of life. . . organizational and psychosocial environment, health and well-being in care staff: contributing factors we also studied how resident agitation and nursing homes’ organizational and psychosocial factors were associated with health and well being in care staff (paper ). working in nursing homes is seen as stressful, as well as physically demanding occupation, and occupational stress levels are rising among care staff in elderly care, leading to a high turn-over rate. few previous studies have explored the relationship between stress in care staff and agitation in nursing home residents. in a review hannan et.al. found only two studies linking work satisfaction and stress with the process of care and outcome for residents. , rodney et.al. found that threat appraisal was significantly related to nurse stress, and sourial et.al found that number of agitated behaviours, their frequency and disruptiveness were significantly correlated with staff burden. this study was limited by a small sample size, however. other factors which may potentially contribute to stress in care staff, such as the association with nursing home environment, including organizational and psychosocial factors, have rarely been studied in nursing homes. we found that organizational and psychosocial factors, in particular those related to the organizational structure of the nursing home, were significantly associated with all three measures of health and well-being in care staff. in contrast, residents’ agitation was not significantly associated with any of the measures of health and well being in care staff. thus, our findings suggest that it is the organization of the nursing home rather than resident factors such as dementia severity or agitation that are associated with stress in care staff. leadership, mastery and control of work were the three organizational and psychosocial factors which significantly explained the variance in care staff health and well-being. quality of leadership was defined through supporting, fair and empowering leadership, which has been reported as a principal element of perceived social work environment. both control and mastery of work are closely connected to the empowering and fair leadership on one hand and supportive leadership on the other hand. thus, the results of our study are consistent with previous work, indicating that management is influential in determining overall levels of job satisfaction. hall found that nurses with greater levels of perceived supervisor support experienced more positive job satisfaction, including less occupational stress. this is supported by the findings from a study in canada, where supervisory support was an important determinant of job satisfaction in nurses aides and that greater supervisory support also was associated with reduced job stress. a study from different service sectors in norway found that high levels of support from the immediate superior, were reported more often by aides in the psychiatric sector and least often by aides in nursing homes. the provision of care for residents with dementia is complex and challenging, and our findings in addition to previous work underline the need for strategies to improve organization and leadership in nursing homes to increase health and well being in care staff as an important part of dealing with the escalating complexity of care. in contrast to previous studies in other countries, where a higher level of job stress in care staff relative to norms were found, job stress and subjective health complaints experienced by the nursing home staff in this study were not higher than in the norwegian population in general. in two norwegian studies, the overall mean distress on hscl- was . , compared to . in our study. similarly, physical health complaints are frequent in the normal nordic population, with % to % reporting at least one health complaints the preceding days. this is comparable to our study where . % reported at least one subjective health complaint the preceding days, indicating that care staff, do not have more subjective health complaints than the general population, although a ceiling effect cannot be ruled out. organizational and structural changes have been performed in nursing homes in norway during the last two decades, with an emphasis on transforming the culture of care, developing a positive culture for empowerment and education of care staff anchored in person-centered care for the residents. these changes may have contributed to a lower level of stress in the care staff in this study. however, we are not aware of previous data to support this hypothesis and thus further studies are needed to confirm this hypothesis. other intervening factors known to cause job stress and subjective health complaints are workload, work experience, and education. in the current study, perceived stress and subjective health complaints correlated with age and shift work, but not with workload (number of hours per week), work experience or duration. this is different from previous studies. the workload as measured by mean work hours per week was hours in our study, this is less than a full position ( . hours), which could explain why the care staff did not experience more job stress or subjective health complaints than the average population. however, it is important to note that the significant association between organizational and psychosocial factors and stress in care staff remained even after adjustment for care staff and resident factors indicating that although the overall level of stress is not high, organizational factors still seem to contribute to stress in a proportion of care staff. further studies are needed to explore the association between organizational and psychosocial factors and health and well-being in care staff, and the possible consequences for the treatment and care of the resident with dementia. however, combined with the possibility of lower prevalence of agitation in norwegian nursing home residents and lower prevalence of stress in norwegian nursing home care staff compared to other countries, some preliminary questions could be asked, although not yet concluded upon: has the culture change, which has taken place in norwegian nursing homes, led to a change from a biomedical model to person-centred care, implicating a real impact on the day to day residential care? have more care staff and fewer residents per unit, empowerment and education of care staff led to better and more targeted treatment and care? brodaty et.al. investigated the attitudes of nursing home care staff towards residents, work satisfaction and strain related to dementia, and found that they believe that behaviours in residents with dementia are deliberate rather than a consequence of dementia, and that they tended to perceive residents in more negative than positive ways. the five most prevalent perceptions were all negative. in paper , agitation was measured based on the subjective opinion of the care staff. the measure of disruptiveness of agitation is essentially a subjective evaluation of the impact of the agitation and is therefore likely to be influenced by care staff factors such as sensitivity, stress, and view of dementia behaviours. thus, psychological distress may influence the rating and artificially increase the reported level of agitation, as previously reported. this potential bias may however strengthen the overall finding in this study of little or no relationship between job stress and agitation, suggesting that care staff did not perceive the residents as negative as previously reported. have we moved forward in perceiving the personhood of residents in norwegian nursing homes? further studies are necessary to answer these questions. we do know from the norwegian study, by kirkevold and colleagues, that most resident receive good basic care in norwegian nursing homes, although more improvements are needed. however, there is a growing body of studies suggesting that differences in welfare systems have little impact upon the day-to-day care, that there are certain attributes to institutionalized care that are seemingly immutable. ward et.al. studied the patterns of communication in residential care and found that little else beyond the routine of care, such as engagement and stimulation happened. furthermore, despite the varied nature of the tasks, the interaction with the resident followed the same routine, labelled as “care-speak”. the “regulation of quality of care” which was conducted by the norwegian government describes the services that should be provided by the municipal, including care in nursing homes for persons with dementia and preserving their rights. however, kirkevold and collegaues found in their survey, that taking part in leisure activities and going outside for a walk were often neglected. furthermore, a high care staff – resident ratio was associated with quality of care, except activities. are care staff in norwegian nursing homes still task- oriented and “getting things done”? is it the transformation of the structure (higher care staff – resident ratio, physical environment i.e.) which has changed and led to a possible lower prevalence of agitation in residents and stress in care staff compared to other countries? this needs to be further investigated. finally, the burnout and turn-over in care staff related to working with cognitively impaired residents in institutions needs to be reconsidered. have we, due to the lack of research on the impact of organizational issues on stress in care staff, taken for granted that it is the challenging complexity of dementia care which leads to stress and turn-over in care staff, rather than paying attention to the organization and working conditions, such as low salaries and status, little room for reflection and possibility for guidance, and little acknowledgement, respect and status in general related to the challenge of caring for the resident with dementia? in spite of the new regulations and plans, there is a growing urgency to reduce expenses while maintaining and increasing quality of care. this paradox is part of the every day work of the leaders as well as care staff in nursing homes. relatives and caregivers experience mixed messages from politicians, who praise the work they do, but at the same time they experience significant cutbacks of resources in the public health care sector. however, despite our observations of relatively low level of agitation and stress in care staff compared to other countries, our findings as well as previous studies nevertheless show that there is a substantial prevalence of agitation and high frequency of use of restraint and psychotropic drugs in norwegian nursing homes. thus, to improve conditions for care staff and nursing home residents, more attention should be paid to the organizational factors, leadership in particular and their relationship to health and well-being as experienced by care staff. . . management of agitation in paper , we found that the educational program improved quality of care by reducing the use of restraint. interestingly, the reduction of use of restraint was found although the severity of agitation did not decline. this suggests that the staff reacted differently even though the behaviour was the same, using better strategies (less restraint) towards the resident. building upon the findings in this study, we performed a new experiment (paper ) using a modified version of the educational intervention, and including data of care staff in addition to data on residents. the results in paper , confirm and extend the findings of the first study. in the homes allocated to educational intervention program (rrc), reduced frequency of restraint was found. in addition, in this study, we found reduced agitation in the intervention group compared to the control condition. the slight increase of agitation in the first study compared to the significant decrease in the main study is interesting and could be explained by the development of the intervention from the first- to the second study. more emphasize was on caring for the care staff, on the care staff contribution to the care staff – resident interaction, empowering them to make the proper assessment and targeted solutions to treatment and care. in addition, a greater emphasize was directed on the predisposing, enabling and reinforcing factors to change the knowledge, attitudes and practises of care staff on a long-term basis and to ensure that the resident’s individual needs and need for treatment are met. the improvement of agitation continued months after the completion of the intervention, indicating that sustained improvement of agitation can be achieved by means of staff training. in contrast, the reduction in restraint, which was evident by a much smaller increase in the intervention group compared to the control group, seemed to be short-lived, suggesting that continuous guidance and support is needed to achieve sustained reduction of the use of restraint. given the lack of efficacy and major safety concerns for antipsychotic agents, and the use of robust and clinically meaningful outcome parameters, these findings are encouraging by demonstrating that improved quality of care and quality of life can be achieved for residents with dementia in nursing home setting by means of simple tools which can easily be implemented. two previous systematic reviews concluded that there is little scientific evidence as to the effectiveness of education and training for nursing home staff, and that the reported studies have methodological limitations such as being non-randomized, and having small sample sizes, with high attrition rates. , most notably, few studies employed long-term follow-up evaluation to ensure whether any effect is sustained beyond the intervention period, and many studies reported staff outcomes only. however, several well-designed recent studies of person centred staff training have demonstrated that the use of antipsychotic drugs, and agitation , can be significantly reduced using these approaches. one of these studies, a large psychosocial intervention study on systematic individualised interventions for agitation used the treatment routes for exploring agitation (trea) to treat the unmet needs of agitated residents with dementia, and their findings suggest that agitation can be decreased. the individualized interventions were anchored in person-centered care, using a holistic approach, showing that person-centered care and psychosocial interventions are promising in decreasing agitation as well as use of restraint. this is an important step forward from the biomedical model to individualized interventions anchored in person-centered care. however, in our opinion, these approaches do not fully integrate the care staff – resident interaction. in each interaction, despite meaningful tools and approaches, there is a meeting between care staff and resident, in which the outcome depends on the understanding there and then, and each care staff’s ability to process this. in order to integrate the change from the biomedical model to person-centered care, care staff needs support and guidance in the process. furthermore, the impact of care staff – resident relation and the impact that each care staff have on the situation need to be considered and supported, in addition to implementing structured tools and psychosocial interventions. encouraging care staff to engage in the resident, acknowledging that the resident with dementia needs to seek meaningful interactions, and needs to be accepted and supported are important factors. . . use of restraint in nursing homes as outlined above, reduction in use of restraint in nursing homes, was found in paper and . in the first study, the number of restraint declined by %. in the second study, the intervention was further developed, including a classification of the use of restraint in two groups; structural and interactional and where emphasize was on reducing the interactional use of restraint. the effect on restraint was evident by a much smaller proportion starting new interactional restraint in the intervention group, than in the control group. this reduction was not evident on second-follow up months after the intervention, suggesting that continuous guidance over time is needed to achieve sustained reduction of the use of restraint. it also suggests that the intervention period, due to the complex challenges, should have been longer; allowing more time and support to implement new skills and routines in the day to day care. few studies, usually small or non-randomized, have demonstrated reduction in the use of restraint after staff education. , , recently, two randomized trials found no change in the use of restraint after an educational program for nurses were performed, but an increase in the control group, indicating that the use of restraint can be prevented, , although this was not confirmed in a recent study by the same authors. these findings are consistent with our findings; that prevention and reduction of restraint are possible. however, more studies are needed to explore this further, using larger cohorts, a combination of elements from different approaches which might obtain the greatest and broadest benefit, and employing additional outcome measures such as cost-effectiveness, quality of life, biomedical markers and more detailed assessment of how the resident-staff interaction can be positively altered. a restraint-free nursing home environment is proposed as a goal in regards to physical restraint, due to the adverse effects of physical restraint such as direct injury and mortality. , ideally, a safe and restraint free environment at all times and for all residents with dementia in nursing homes, should be a goal. however, a nursing home environment free from all kinds of restraint (structural and interactional) is not necessarily in the resident’s with dementia’s best interest. structural restraint, outside the caregiving activity, such as locked doors, might be necessary for safety reasons, to protect the resident from potential harm. as shown in this study, there is a great potential to reduce use of interactional restraint, through better targeted treatment and individualised, person-centered care. to act in the best interest of the resident, is one of the major challenges when caring for residents with dementia in nursing homes and this should be the ultimate goal. it will include a decision making process which ensures that the decision is based on each resident’ individual need. all aspects of the situation: care staff, nursing home environment, resident, resident history, resident relations on all levels, the way resident and care staff influences each other and possible treatment approaches need to be considered. the aim should be that “every decision to use restraint towards residents with dementia in nursing homes, should be carefully considered, based on each residents individual need and situation and in his or her best interest”, as outlined in . . . methodological issues . . design cross-sectional design cross-sectional design was used in papers - . this practical and economical design can give valuable information on how different phenomena are related at a fixed point in time. there are, however several limitations to this design, mainly that the phenomena under investigation are captured as they manifest themselves during one time of the data collection. the results could be explained by several other factors related to time, as opposed to longitudinal designs, where the data presented are collected over more than one point in time. the cross-sectional approach may capture only a limited time period and may thus not capture rare behaviours or behaviours which vary with time. furthermore the cross-sectional approach makes causal interpretation difficult, as it is difficult to know which variable influenced the other. however, this limitation can be reduced through strong theoretical framework guiding the analysis. in paper , previous research on job stress and well being in care staff and a theoretical framework for occupational stress and well being were used to guide the analysis and description of care staff health and well being and the association with resident factors, care staff factors and organizational and psychosocial factors. in paper , several limitations should be noted. analysis of data was performed post- hoc, after the experiments in the different countries were concluded and without being specified a priori, with an increased risk for spurious, false-positive findings. it has been recommended that cross-country studies should control for variables that may affect comparisons of agitation, such as age and sex structure. we were able to control for several key resident factors, such as age, gender and dementia severity, but the study design did not allow for a comparison of dementia diagnosis across countries. similarly, we were unable to adjust for physical co-morbidity, which might differ among the homes and influence the total care burden. the nursing homes were not randomly selected from the countries and may therefore not be representative for the nursing home populations in the three countries. although good psychometric properties have been shown for the cmai, inter-rater reliability was not assessed in this study, and no attempts were made to calibrate the ratings across centres. except for global measures such as staff/resident ratio and number of residents per unit, we had no access to information regarding these more subtle aspects of the nursing homes, including care staff-resident interaction and the understanding and management of the behaviour. it is likely that such factors contributed to the observed differences in addition to the structural variation. however, the aim of the study was not to compare the situation in nursing homes in the three countries per se, but rather to take advantage of larger structural and organizational differences between nursing homes than would probably occur when studying homes within a more limited geographical region. experimental design an experimental design was used in papers and . agitation and use of antipsychotics and restraint in residents with dementia were the dependent variable, and nursing homes were randomly assigned to the intervention or the control conditions. randomization is the preferred scientific method for equalizing groups, although there is no guarantee that the groups will be equal. in fact, in paper , there were statistical differences between groups for several key variables, including the primary outcome variable cmai, despite random allocation. in a randomized, controlled trial, the randomization process essentially means that every subject has an equal chance of being assigned to any group, as typically seen in pharmacological trials. randomization of individual residents is one of the major difficulties in psychosocial interventions in nursing homes in general, since the total nursing home environment will be influenced by a training program. this is reflected in several systematic reviews of the effect of psychosocial treatment, , where only a few randomized controlled trials have been identified. cluster randomization is an important alternative to individual randomization, which involves randomly assigning groups or clusters of individuals to different treatment groups. the strength of this method is that the intervention can be given to a ward or a nursing home as a group, and avoid the possibility of contamination between different treatments in the same ward, through commingling of subjects in the group. to further avoid contamination between the groups, we chose to randomize the nursing homes as a whole, and not only wards, to the different treatment groups, since the total nursing home environment, would be influenced by the training program. this method of randomization is recommended to prevent interaction by the different treatment groups. , , the limitation of this method is that the sample size requirements are greater for a given effect size. in our power calculation we estimated that n= in each group would provide sufficient power for the statistical analysis. this calculation however, was built upon randomization of individual subjects to the different treatment groups. the small numbers of participating homes precluded the use of standard cluster-analysis in the statistical analyses, and thus comparing individual residents might have introduced a bias due to an increased risk of false-positive findings (type -error). another issue is the problem of blinding. double-blind intervention, where neither the rater nor the participant knows which intervention is received, is the ideal. this is not possible in psychosocial studies, where the participants, in this case the care staff, obviously are aware of participating in the educational intervention. as an alternative, single-blind design was used. the rater who collected the outcome measurement was blind as to treatment allocation, as well as the overall design of the study. the nursing homes allocated to control condition received treatment as usual. comparing an intervention with “usual treatment” is problematic, since there are probably non-specific benefits from any intervention. this possible bias, also known as the hawthorne effect, and defined as “an increase in worker productivity produced by the psychological stimulus of being singled out and made to feel important”, might be an important factor, affecting the interpretation of the findings. mccarney et.al studied the magnitude of the hawthorne effect in the context of a community dwelling study with residents suffering from mild to moderate dementia. they found evidence of a small hawthorne effect in this randomized non-blind placebo-controlled clinical trial, were individuals who received more intensive follow-up had a better outcome than individuals receiving minimal follow-up. a non-specific intervention would therefore have been a preferable comparator, controlling for non-specific benefits, and thus enhancing the likelihood that the observed effects were in fact related to the specific elements of the intervention rather than merely non-specific effects. another difficulty in interpreting the findings was the baseline differences in the outcome variables agitation and use of restraint in the intervention and control homes, which might introduce a confounding effect. the more severe agitation and more frequent use of restraint in the intervention homes might have contributed to the differences between the two groups by unspecific factors such as regression to the mean, and by a different effect of the intervention depending on the baseline severity of the outcome variable. however, the consistent and sustained reduction in agitation, and the fact that the use of restraint was increased in the control group compared to stable use of restraint in the intervention group, argues against regression to the mean as a major factor explaining the differences. one frequently used method to adjust for baseline differences is to include these variables as co-factors in multivariate analyses. however, although frequently performed, it is recommended to not include baseline value of the outcome as a co-factor when using repeated measurement anova. . . case selection selection bias is of critical concern to the internal validity of a study. differences between the groups in the study could affect the dependent variable in ways extraneous to the effect of the independent variable and may lead to erroneous estimation of the effectiveness. recruitment and potential bias in the first study seven nursing homes were invited to participate and four agreed to participate; two small homes (rural) and two large homes (urban). as discussed above, they were similar to other nursing homes in the region with regard to size, organization and staff-resident ratio with no obvious systematic recruitment bias. similarly, in paper , the four nursing homes that were included were all funded by the councils and were similar to other nursing homes in the region with regard to size, organization and staff-resident ratio. taken together, we believe that there was no systematic selection bias which would affect the cohorts. this conclusion is supported by comparing the baseline characteristics of our sample to a recent larger norwegian study, including more than residents, in terms of resident age (mean (sd) . ( . ) (this cohort) vs. . ( . ) (regular units, norwegian study), gender (female . % vs. %), and proportion with dementia ( . % vs. . %). thus, we believe that the nursing home residents included in this study can be considered representative of norwegian nursing home residents in general. accuracy of diagnoses another potential bias is the accuracy of diagnosis. it is not common that all residents in norwegian nursing homes are diagnosed for dementia, and selbæk et.al., found that only % of the residents included in their study had a diagnosis of dementia in their records. the design of the current study included a standardized and reproducible assessment of dementia by an experienced and certified research nurse for all residents. severity of dementia was rated using standardised and established instruments such as fast, gds and cdr. these methods of staging dementia have been shown to have acceptable reliability and accuracy. importantly, an australian study showed that cdr based solely on information data is valid among community resident. however, the design did not include diagnosis of dementia subtype. thus, it is possible, although unlikely, that there were differences in the distribution of dementia subtypes in the three countries (paper ), and also in the two treatment groups in papers and . in paper , an error was made, regarding fast stage higher than as dementia, instead of a cut-off of or higher. however, this would not influence the findings, since the number of residents with fast scores and was very low. . . methods of measurement psychometric assessment of an instrument, including the validity and reliability, is an important requirement in quantitative research. in this study all instruments used are well known and well tested in terms of psychometrics, and have been used in numerous studies. one limitation is that the assessment and evaluation of residents were based on measurements relying on care staff. in addition, in paper , agitation was measured based on the subjective opinion of the care staff. care staff ratings are biased by care staff feelings and ability to observe and respond. thus, psychological distress may influence the rating and artificially increase the reported level of agitation, as previously reported. using direct observation may provide a better way to measure agitation. this potential bias may however strengthen the overall finding of little or no relationship between job stress and agitation in paper . in paper , ratings of agitation were compared across nursing homes in three different countries. good psychometric properties have been shown for cmai, and finkel et.al. found high internal consistency, but only marginally adequate inter-rater reliability. inter- rater reliability was not assessed in this study, and since the data were analysed post- hoc, no attempts had been made to calibrate the ratings across the three countries. it is therefore possible that low reliability may have influenced the findings. in addition, cross-cultural research into agitation in dementia should implement rating instruments with adequate psychometric properties in different languages. we are however not aware of studies assessing the psychometric properties of the german and norwegian versions of cmai. . . statistics limitations of paper and include the small sample size, the lack of control over the use of drugs during the study period, and the use of a non-active control condition. in paper , the number of residents included was also low, particularly in austria. thus, statistical power was reduced. univariate analysis of cross-sectional data may be subject to a range of possible bias. therefore, multivariate analyses were used in several studies, including papers and , and the relative contributing effect of the various potential factors can therefore be analysed independently. a multitude of analyses have been performed, for example in paper , without any attempt to adjust for this. there is therefore a risk that some of the statistical significant relationship may be spurious and due to multiple testing, rather than a true statistical association. . conclusions we found that % of the residents with dementia exhibited at least one agitated behaviour at least weekly. this high proportion underlines the clinical importance of agitation in institutionalized people with dementia. however, the frequency in the nursing homes in rogaland county was low compared to nursing homes in austria and uk. this may be due to structural differences, including the mean number of residents per ward and care staff - resident ratio. similarly, the use of psychotropic drugs differed significantly between the homes, with a higher proportion of antipsychotic drugs in uk and austrian nursing homes compared to norwegian nursing homes. thus, these findings suggest that the culture change, which has taken place the last two decades in norwegian nursing homes, may have had a beneficial effect on the quality of care for residents with dementia. it is therefore possible that similar changes in nursing homes may improve the conditions and quality of life of nursing home residents in terms of less agitation and less use of antipsychotic drugs also in other countries, although this remains to be shown. in addition, we found that organizational and psychosocial factors, in particular those related to the organizational structure and management of the nursing home, were significantly associated with health and well-being in care staff. in contrast, residents’ agitation was not significantly associated with any of the measures of health and well- being in care staff. these findings suggest that in order to improve conditions for care staff, and thereby reducing staff turn-over and possibly increase quality of care provided, the focus should be on improving organizational structure and managerial issues. more studies are needed to further test these hypotheses. we demonstrated that a relatively simple educational program led to reductions in the use of restraint, and induced sustainable reductions of agitation. overall, our findings suggest that by lowering the care staff - resident ratio and by providing additional training, guidance and support, improved care and well-being of residents with dementia can be achieved. we propose that the change from a biomedical model of care to person-centered care is an important part of improving quality of care and quality of life in nursing homes, and that care staff need guidance and support through the process of this change. implications for clinical practise our findings suggest that by implementing good person-centered care and adequate staff - resident ratio, agitation can be reduced without a very high proportion of residents on antipsychotic drugs. thus, in addition to securing an adequate care staff - resident ratio, education and guidance for all care staff in all nursing homes should be mandatory as an important step to increase quality of care, and health and well-being in care staff. we also demonstrate that reducing the use of restraint is possible in nursing homes and that this can be achieved without a significant increase in agitation, and with a relatively low prescription of antipsychotic drugs. these findings need to be communicated to the nursing homes to encourage staff training and attempts to reduce the use of restraint. together with the nursing home physician, care staff should be taught that is possible to withdraw or limit new use of antipsychotic drugs. finally, the administrators and the managers of the nursing homes need to be aware of the impact that the type of leadership can have on the care staff work relations, and possibly on the quality of care. one way to address this would be to develop regional or even nation-wide educational programs for nursing-home managers. implications for future research more research is needed to explore factors contributing to agitation and other behavioural changes in residents with dementia, in order to understand it properly. predisposing, enabling and reinforcing factors to change the knowledge, attitudes and practises of care staff on a long-term basis, should be explored. comparative, international studies including detailed assessment of structural and cultural aspects are well suited to explore how quality of life of residents and quality of care are related to the cultural and structural nursing home characteristics. a detailed exploration of which elements of the available psychosocial interventions are the most powerful in order to induce change in care practice is needed. such studies should also address the intensity and duration of the interventions required to achieve the optimal balance of cost and effect. importantly, these studies should be adequately powered, and employ broad outcome measures, including cost- effectiveness, quality of life, and stress in care staff, and more detailed assessment of how the care staff - 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vol. no. , february-july , ( - ) changing dimensions in human–animal relationships: animal assisted therapy for children with cerebral palsy jojo joseph , natasha thomas , aneesha thomas lecturer, college of nursing, co-operative institute of health sciences, thalassery, kerala, india phd scholar, department of nursing, nimhans, bangalore,india senior resident, department of neurology, all india institute of medical sciences (aiims), new delhi, india. correspondence address: jojo joseph email id:jojojosephmsn@gmail.com international journal of child development and mental health cdmh vol. no. , february-july , ( - ) limited ability to participate in the activities at home, school and during play. animal assisted therapy is the use of trained animals as a therapeutic tool to assist humans in restoring strength, balance, flexibility, and improving cognitive and emotional abilities and whose use reportedly dates back to the s, when an army corporal brought his yorkshire terrier to a hospital to cheer wounded soldiers. there is a noted increase in the body of research literature over the past couple of years in its use among children with cp;but even then, existing literature is quite restricted. animal assisted therapy nimer & lundahl ( ) found that animals have a natural affinity for creating bonds with people, which makes the animal assisted interventions possible and beneficial. this natural tendency fosters quick rapport and empathy between animals and children (chandler, ). delta society ( ) classifies animal assisted interventions into two types, animal assisted activities (aaa) and animal assisted therapy (aat). aaa involves less formal human animal interaction and is used for social visits of animal to hospitals or other community settings. aat is goal directed where the animal should meet specific criteria. aat is defined as a goal oriented intervention in which the animal is a part of the treatment process delivered by a health /human services professional (anderson, ). nimmer and lundahl ( ) defined aat as the deliberate inclusion of an animal in a treatment plan where the introduction of animal is designed to accomplish predetermined outcomes believed to be difficult to achieve otherwise, or outcomes best addressed through exposure to animals. research and observations suggested that the involvement of animals can be useful for educational and motivational effectiveness for participants in the therapy. when an animal or a pet is involved in therapy, the therapist may be viewed as being less threatening, which enhances the rapport between patient and therapist. varieties of animals are used in different medical conditions, and include domesticated pets, farm animals and marine mammals (such as dolphins). but research literature states concerns about the poor quality of medical evidence underpinning aat. the most widely used animals in cerebral palsy are horses. hence this article details more regarding equine assisted therapy, and gives a brief description regarding canine and dolphin assisted interventions. dolphin assisted therapy (dat) dolphins are considered closest to human beings because of their ability to keep contact with humans for very long periods, as well as their intelligence and sociability. dolphins can be used as motivators for improving attention span, and it is hypothesized that communication with dolphins has a positive impact on brain waves. moreover, high frequency sound emissions by dolphins are considered to have a positive impact on neuro physiologic hormones (nathanson, decastro, & friend, ). dat is one of the popular forms of animal assisted therapy which can be used in children and adults with cerebral palsy. dolphin assisted therapy can improve movement, motor control, attention span, speech, language skills and behavioural skills. but there is a dearth of scientific evidence regarding its potential and long term benefits, in literature. canine/dog assisted therapy dogs have been a part of human life since the beginning of civilization and became the first domesticated animal. forbes & marxen ( ) found that occupational therapy with a therapy dog, increased enjoyment and participation in the therapy process of the child with cp. elmaci & cevizci ( ) reported that children with cerebral palsy improved in their ability to use their bodies international journal of child development and mental health cdmh vol. no. , february-july , ( - ) according to their capabilities. the curative effects of dog assisted therapy comprise psychological, emotional, play and physical stimulation. the researcher has used a therapy dog for improving the use of the right side of the body,in a child with right hemiparesis.the child’s muscle tone was increased, as he has difficulty using the right side, his awareness of the right side was low,and he used his left side to accomplish all activities. the goal of the child was to give yogurt to his dog. it was reported that the cold yogurt, the warm tongue of the dog and the vibration triggered by licking, decreased muscle tone and increased the awareness of its extremity. but the result found was temporary, and he also concluded that dog assisted therapy also improved balance in children with cp. there is extreme scarcity of scientific evidence in literature and the above mentioned studies are purely anecdotal. equine assisted therapy some records say that greeks used horses to improve movement since bc. horse assisted therapy is being widely used in a variety of medical and psychiatric conditions. previous studies have widely used equine assisted therapy in children with cerebral palsy and have documented its effectiveness. types of equine assisted therapy two types are widely used, hippo therapy and therapeutic horseback riding (thr). in hippo therapy, a physical or occupational therapist controls the horse to influence the child’s posture, balance, co-ordination, strength and sensory motor systems, while the child interacts with the horse and responds to the movement of the horse. thr is led by a trained riding instructor with the child actively controlling the horse as a form of exercise or to improve co-ordination, balance, and posture and to encourage development of sensory and perceptual motor skills. but the thera- peutic goals are the same- the warmth and shape of the horse and the rhythmic three dimensional movement of thr are believed to improve the flexibility, posture, balance and mobility of the rider. goals/ benefits of equine assisted therapy . improves gross motor development, specifically walking, jumping, and running. . benefits physical characteristics, strength, muscle symmetry, balance, posture, arm and leg coordination, trunk stabilization, flexibility, grasp/ release patterns. . develops social and communication skills. . mobilizes the pelvis, lumbar spine, and hip joints. . normalizes muscle tone. . develops equilibrium reactions of the trunk. . facilitates relationship building. . provides an experience of physical affection. . enhances self-esteem. contra indications for equine assisted therapy . children under years of age . seizure disorder . scoliosis . dislocated hip . allergy mechanism of hippo therapy hippotherapy can be effective when dynamic three dimensional movement of the horse is transferred to a patient, which produces a combination of sensory, motor and neurological input and can improve muscle tone, range of motion, strength, coordination, posture, balance, gait, gross motor skills, and walking abilities. it has profound cognitive, social, and emotional behavioural benefits also. hippo therapy international journal of child development and mental health cdmh vol. no. , february-july , ( - ) improves the functioning of neural muscles, and while riding, due to movement of the horses, riders experience - bodily movements in minutes. movement generated by horses walking, allows riders to experience dimensional motions, forward/backward, left/right, upward/downward. it was reported that the movement of horses, transmitted to the riders, is similar to the pattern of movement which occurs in the pelvis of walking humans, and generates the same feelings of motion effects, as though the riders were walking themselves. the rhythmic and repeated movement of horses, through horseback riding, provides the riders with sensory input, which stimulates the superior motor nerve along upward neurotabes (debuse, chandler, & gibb, & herrero, asensio, garcia, marco, olivan, & ibarz, ) and activates the neural circuit of voluntary movement. children with cp use extensor muscles excessively in order to maintain their sitting posture, mobilize muscles abnormally, and use antagonistic muscles excessively. (brogren, hadders, & forseberrg, ; liao, yang, hsu, chan, & wei, ) . the proper posture during horseback riding is to maintain hip joint and knee joint, and such posture induces a decrease in the muscle tone and spasticity of the riders. the posture of the child during horseback riding naturally alleviates tension and enables functional movement. while doing therapeutic riding, children with cp recover an appropriate posture, and maintaining an appropriate posture plays an important role in reducing spasticity. (meregillano, ). horse riding requires contraction and relaxation of all muscles inside the thigh. in the case of riding on horses without stirrups, gravity helps to relax calf muscles. in the case of stirrups, gravity helps to relax heel tendons. such a balancing exercise of muscles reduces one leg movement, and the balanced use of two legs prevents the riding posture from leaning in one direction. achieving correct posture and remembering correct bodily movement is considered to be an effect of horseback riding. even when a horse turns in one direction, the rider’s body automatically compensates by leaning in the opposite direction. so the child automatically learns to accommodate to the horse’s particular gait pattern. (jung, jung, & cho, ). while horse riding, as each forelimb and hind limb of the horse hit the ground, there is a shifting of the riders’ trunk in between impacts. the constant motion of the trunk would seemingly affect the riders vestibular, proprioceptive, and neuromuscular systems stimulating equilibrium responses, and allowing enhancement of preparatory and anticipatory trunk muscle activity for proximal stability criteria for animals to be used in aat animals should have the right temperament, be friendly, affectionate, and sociable with all ages and ethnicities, as well as any gender. (chandler, ).if dogs, they should be able to tolerate high levels of noise and activity, be relatively calm, obedient, easy to control, and should be comfortable travelling in a car and visiting unfamiliar places, and also tolerant under stress. humans’ basic psychological needs of being loved, respected, cared for, useful, needed, accepted and trusted, can be fulfilled by animals. they play the roles of companion, friend, servant, dependent, admirer, confidante, scape goat, mirror, trustee and defender (urichuk & anderson, ). potential barriers of animal assisted therapy . lack of time . financial constraints . transportation issues . need of properly trained animals . lack of familiarity with aat and its wide scope of practice . cultural differences . sanitation concerns international journal of child development and mental health cdmh vol. no. , february-july , ( - ) animals can be carriers of zoonosis, diseases and infections and transmit them to humans. research conducted concluded that the rate of infections from animals to humans is minimal, if adequate safety measures are taken, e.g.using barrier methods, hand washing, meticulous grooming and health care of canines, therapy dogs trained not to lick or scratch to avoid infecting, and proper vaccinations, will prevent various zoonotic diseases. . allergic issues positions used in equine assisted therapy in hippo therapy the horse is used as a treatment modality, similar to the therapeutic balls and bolsters typically used in paediatric physical therapy clinics. the therapist places the child in various positions on the horse -supine, prone, prone backwards, sitting backwards, or sitting sideways, to facilitate desired postural reactions and motor responses. the prone position is being prone over the horse’s barrel, prone propped on both elbows with weight bearing equally on shoulder joints and across the shoulder girdle.the prone propped position is a functional skill and there are very few published studies measuring its effect on improving gross motor function in children with hypotonic cp. prone and sitting positions on a horse’s back, can activate axial extension of the back and facilitate head control to improve gross motor function in children with spastic cp.yet the effects of the two positions utilized in hypotonic cp are still unclear due to limited evidence of its effectiveness. hsieh, zhan, wu, yang, lee, & luo ( ) studies conducted to compare the effects of different positions used in hippo therapy are limited. hsieh et al ( ) in his study reported that the prone propped position showed marked improvement, more than the sitting backward position. frequency and duration of hippo therapy sessions the number of hippo therapy sessions varied widely from session to session, throughout a year. but in the majority of the studies retrieved, sessions ranged from weeks to weeks, of minutes to one hour duration, once or twice a week. a systematic review and meta-analysis of rct and observational studies on therapeutic horse back riding and hippo therapy by tseng, cheng, & tam ( ), points out the lack of difference in the effect of long term hippo therapy with a total riding time of to hours, compared to short term hippo therapy with a total riding time of - minutes. mcgee & reese ( ) reported that there are no significant differences immediately after one session of therapy on spatio temporal parameters of gait. there is a dearth of scientific literature to be able to conclude the desirable frequency and duration of a session. effectiveness of equine assisted therapy on various parameters health professionals are not really convinced about the usefulness of this kind of therapy and the evidenced based practice in this area is extremely minimal. hence we felt it would be beneficial to discuss various research conducted on animal assisted therapy in children with cerebral palsy (cp) and the issues and challenges associated with it. hippo therapy on modulation of back geometry el-meniawy & thabet,( ) reported that hippo therapy employs locomotion impulses that are eliminated from the back of a horse while the horse is walking.these impulses stimulate the rider’s postural reflex mechanism. it affects multiple systems, such as sensory, musculoskeletal, limbic, vestibular, and ocular systems simultaneously,leading to different therapeutic international journal of child development and mental health cdmh vol. no. , february-july , ( - ) was noted after replacing the sitting backward programme with the prone propped position. the study concluded that hippotherapy enhances gross motor performance and functional ability in hypotonic cp with appropriate treatment positions. davis, davies, wolfe, raadsveld, heine, & thomason ( ) reported contradictory results where he documented that there is no significant difference in gross motor function after the therapy. effect of hippotherapy on postural control, balance and adl a meta-analysis by zadnikar & kastrin ( ) on the effects of hippo therapy and therapeutic horseback riding on postural control and balance of children with cerebral palsy reviewed and analysed eight different studies. result showed statistically significant improvement in postural control and balance. but the generalization is restricted due to small sample size. the studies also had some limitations.children differed in type and severity of cp, such as mild or moderate diplegia, tetraplegia and hemiplegia, while the comparison group was composed of children with cp and non-disabled, activities were different in different studies, and used different methods, instruments and duration. bertoti ( ) studied the effect of hippo therapy on postural changes in eleven, two to nine year old children with spastic diplegia and quadriplegia. one hour, twice a week for weeks intervention was given, and the findings showed significant improvement in posture. silkwood sherer, killian, long, & martin ( ) documented consistent findings where hippo therapy showed improvement in balance and increased performance of activities of daily living. horseback riding effects on muscle tone and range of motion baik, byeun, and baek ( ) reported effects. he has investigated the effect of hippo therapy training on modulation of back geometry in children with spastic diplegic cerebral palsy. these children suffer from abnormal back geometry, poor postural reflexes, and poor alignment of the trunk, so the quality of sitting and standing postures are affected and reflected in their lives and activities of daily living. hippo therapy showed a significant reduction in measured variables, lateral deviation, trunk imbalance, pelvic tilt, and surface rotation of vertebra. effect of aat on gross motor function streba, rogers, france, & vokes ( ) reported that recreational horseback riding improves the gross motor function in children with spastic diplegia, spastic quadriplegia, and spastic hemiplegia types of cp. one hour of therapy per week for weeks showed improvements in gross motor functions of walking, running and jumping which increased . % after weeks, and . % after weeks. this improvement in gross motor function is also supported by study results of mcgibbon ( ). this result is replicated in the study conducted by park, rha, shin, kim, & jung ( ),where they have used minutes of hippo therapy, twice a week for weeks for children with spastic cerebral palsy.the results of the study demonstrated the beneficial effect of hippo therapy on gross motor function and functional performance in children with cp. hsieh et al ( ) investigated the therapeutic effects of hippo therapy using specific positions and its longitudinal improvement in a child with hypotonic quadriplegic cp. she received minutes intervention twice a week for one year where two treatment positions are used, sitting backward for the first months and then prone propped positons for the next months. the improvement was limited after initial month hippo therapy with sitting backward, and marked improvement international journal of child development and mental health cdmh vol. no. , february-july , ( - ) that participation in therapeutic horseback riding improves knee muscle tone of children with spastic cerebral palsy. participation also improved hip joint motion range for the knees of children with cp. lee, kim, & lee ( ) applied weeks of therapeutic horse back riding for children with spastic diplegia and concluded that spasticity of elbow joint bending and knee joint bending decreased significantly. kulkarni, mcguigan, narula, & sepalak ( ) also reported consistent findings. horseback riding significantly improved the right side hip joint and the articular range of motion of the knee and ankle, and the pelvic movement during walking was close to normal. shurtleff et al ( ) reported similar findings that horseback riding increased the articular range of motion in children with spastic cerebral palsy. hippo therapy effects on gait parameters kwon, chan, lee, ha, lee, & kim ( ) evaluated the effects of hippo therapy on tempero spatial parameters, and pelvis and hip kinematics of gait in children with bilateral spastic cerebral palsy. hippo therapy was given for minutes, twice weekly for consecutive weeks. the study documented that hippo therapy significantly improved walking speed, stride length, and pelvic kinematics, (average pelvic anterior tilt at initial contact, pelvic anterior tilt at terminal stance). mcgee & reese ( ) reported a contradictory study where they studied the immediate effect of hippo therapy on spatio temporal parameters of gait, in spastic quadriplegia and hemiplegia, and documented that there is no significant difference immediately after one session of therapy, on spatio temporal parameters of gait. hippo therapy effects on muscle symmetry, trunk/head stability and functional reach benda, mcgibbon, & grant ( ); mcgibbon, benda, duncan, & silkwoodsherer ( ) reported improvement in muscle symmetry with hippo- therapy. shurtleff, standeven, & engsberg ( ) reported results of a study which investigated the effect of hippotherapy on trunk/head stability, and upper extremity reaching/targeting in children with spastic diplegic cerebral palsy, after weeks of intervention. results revealed significant improvement in trunk/head stability and upper extremity reaching/targeting. these skills formed a foundation for many functional skills that also enhanced occupational performance and participation hippotherapy simulators in children with cp hippo therapy simulators are available for purchase,imitate the movement of a horse,and increase a patient’s accessibility.however there isa scarcity of research evidence in this area. only three papers have been identified, after a comprehensive research review (herrero, asensio, garcia , marco, olivan, & ibarz, ). herrero, trullen, asensio, garcia, casas, monserrt, & anand ( ) investigated the therapeutic effects of a hippo therapy simulator in children with cerebral palsy. sitting balance improved significantly after the intervention, while the effect was seen more in the severely disabled. however, the improvements were not maintained over the follow up period, but this did not lead to a change in the overall function of these children quint & toomey ( ) reported that treatment on a hippo therapy simulator can lead to improvement in static posture; however, they also noted similar improvements when patients used a static saddle. kuczynski & slonka ( ) demonstrated that there is an increase in the sagittal plane stability following months of treatment using a hippo therapy simulator. there is a lack of research to prove the clinical effects of hippo therapy simulators and rigorous studies with large samples are needed to prove its benefits. international journal of child development and mental health cdmh vol. no. , february-july , ( - ) aat effects on psychological variables lubbe & scholtz ( ) have done a case study using a therapy dog with a child, and findings suggested that aat facilitated relationship building, enabled communication, provided an experience of physical affection, improved socialization skills, and enhanced self-esteem. research evidence shows that the presence of an animal tends to reduce stress (jalango, astorino, & bomboy, ). physiological measures such as reduction in heart rate, lowering of bp and other signs of anxiety, show that it moderates stress (katcher, friedmann, beck, & lynch, ). in one study of peer interaction, a child without disabilities was times more likely to interact with a peer who had disabilities, if the child wasaccompanied by a dog (katcher, ). it plays a social lubricant function as described by boris levinson ( ), a child psychotherapist and the father of pet therapy. studies have observed that horseback riding: motivates the children as it is interesting to them, is expected to provide a synergistic effect to functional improvement of the children, reduces resistance to treatment, and encourages enthusiastic participation. conclusion original research conducted among children with cerebral palsy indicated improvement in motor areas such as gross motor functioning, re-establishing muscle symmetry, improving trunk stability, postural control, balance, gait, range of motion, functional skills, adl, strength, co-ordination, and muscle tone. it also revealed significant improvements in psychological variables such as cognition, attention, concentration, memory, self-esteem, emotional well-being and social interaction, but we observed a scarcity of literature in the paediatric population and most of the articles are anecdotal in nature. nevertheless, in the united states and northern europe, this kind of therapy has begun to be implemented in a regulated and systematic way to deliver concrete results. however, animal assisted therapy demands empirical scientific evidence from studies conducted more systematically in its methods, duration and other criteria. international journal of child development and mental health cdmh vol. no. , february-july , ( - 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( ). effects of hippotherapy and therapeutic horseback riding on postural control or balance in children with cerebral palsy: a meta-analysis. developmental medicine & child neurology, ( ), - . doi: . /j. - . . .x vol. no. , february-july , ( - ) gordon et al. bmc geriatrics , : http://www.biomedcentral.com/ - / / research article open access a systematic mapping review of randomized controlled trials (rcts) in care homes adam l gordon *, phillipa a logan , rob g jones , calum forrester-paton , jonathan p mamo , john rf gladman and medical crises in older people study group abstract background: a thorough understanding of the literature generated from research in care homes is required to support evidence-based commissioning and delivery of healthcare. so far this research has not been compiled or described. we set out to describe the extent of the evidence base derived from randomized controlled trials conducted in care homes. methods: a systematic mapping review was conducted of the randomized controlled trials (rcts) conducted in care homes. medline was searched for “nursing home”, “residential facilities” and “homes for the aged”; cinahl for “nursing homes”, “residential facilities” and “skilled nursing facilities”; amed for “nursing homes”, “long term care”, “residential facilities” and “randomized controlled trial”; and bni for “nursing homes”, “residential care” and “long-term care”. articles were classified against a keywording strategy describing: year and country of publication; randomization, stratification and blinding methodology; target of intervention; intervention and control treatments; number of subjects and/or clusters; outcome measures; and results. results: abstracts were identified and articles reviewed in full. most were recent (median age years) and from the united states. a wide range of targets and interventions were identified. studies were mostly functional ( behaviour, prescribing and malnutrition studies) rather than disease-based. over a quarter focussed on mental health. conclusions: this study is the first to collate data from all rcts conducted in care homes and represents an important resource for those providing and commissioning healthcare for this sector. the evidence-base is rapidly developing. several areas - influenza, falls, mobility, fractures, osteoporosis – are appropriate for systematic review. for other topics, researchers need to focus on outcome measures that can be compared and collated. background care homes provide accommodation, together with nursing or personal care, for persons who are or have been ill, who have or have had a mental disorder, who are disabled or infirm, or are or have been dependent on alcohol or drugs [ ]. in the uk, % of residents are over years of age, % require assistance with mobil- ity or are immobile and % have at least one form of mental impairment [ ]. in some countries, such as the netherlands and usa, health care professionals are based within, or employed by, care homes [ - ]. in others, such as the uk or * correspondence: adam.gordon@nottingham.ac.uk division of rehabilitation and ageing, university of nottingham, nottingham, uk full list of author information is available at the end of the article © gordon et al.; licensee biomed centra commons attribution license (http://creativec reproduction in any medium, provided the or ireland, the health care provision for care homes is pro- vided by generic primary care services. the provision of health care to this sector is a matter of concern, debate and innovation [ - ]. quest for quality, a document by the british geriatrics society [ ], stated that health care for care homes in the uk was characterised by “unmet need, unacceptable variation and often poor quality of care”. to improve matters, the report recommended the development of a more structured and evidence-based approach to com- missioning. to inform this process, we set out to de- scribe the extent of the evidence-base for the effectiveness of interventions specific to care home resi- dents. we chose a systematic mapping review because these are specifically designed to describe the extent of research in a field [ , ]. we chose to review only l ltd. this is an open access article distributed under the terms of the creative ommons.org/licenses/by/ . ), which permits unrestricted use, distribution, and iginal work is properly cited. mailto:adam.gordon@nottingham.ac.uk http://eppi.ioe.ac.uk/eppiwebcontent/downloads/eppi_keyword_strategy_ . . .pdf gordon et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / randomised controlled trials (rct) so that the findings would represent the highest tier of medical evidence for therapeutic interventions [ ]. methods medline ( -jun ) was searched for “nursing home”, “residential facilities” and “homes for the aged”, combined using the “or” command. results were limited for english language and rcts. cinahl with full text ( -june ) was searched for “nursing homes”, “residential facilities”, “skilled nursing facilities”, with results limited to rcts. the allied and comple- mentary medicine database (amed) ( -june ) was searched for “nursing homes”, “long term care” and “residential facilities” combined using the “or” command and “randomized controlled trial” using the “and” command. the british nursing index and arch- ive (bni) ( -june ) was searched for “nursing homes”, “residential care” and “long-term care”. abstracts were reviewed by a single researcher and arti- cles included if they described interventions evaluated by rct in residential, nursing or care homes. a keywording strategy [ ] was developed by three researchers using an iterative approach and a random sample of articles, which were reviewed repetitively with key descriptors recorded. the researchers met after each iteration and the process concluded when two subsequent reviews identified no new descriptors. the resulting framework described: year of publication, country of publication, individual or cluster randomization, stratified or non-stratified randomization, method of stratification, blinding strategy (patient/investigators/ both/neither), target of intervention, intervention treat- ment, control treatment, number of subjects (total/inter- vention/control), number of clusters (total/intervention/ control), outcome measures and results. the remaining articles were then divided amongst six reviewers who classified them according to the keywording strategy. as a final measure, all articles were reviewed by the lead researcher with disagreements resolved by consensus. results the abstracts of the unique citations identified from the search were examined, of which described rcts in care homes. forty of these were excluded at full review leaving articles in this review. a prisma flow diagram is shown in figure . the majority of studies ( ) were conducted in the usa, followed by the uk ( ) and the netherlands ( ): articles came from the americas, articles from europe, from asia and from australasia. figure , showing the publication rate by year, demon- strates a steady increase in the number of publications over the last two decades. the median age of the publi- cations was years. key methodological attributes of the studies are out- lined in table . primary targets for interventions were identified, as summarised in table . for interventions targeting resident behaviour, most pharmacological studies evaluated risperidone [ - ] or olanzapine [ , ]. two studies evaluated interventions aimed at withdrawal of antipsychotic medications [ , ]. studies listed under occupational therapy, aids and appliances targeting behaviour were heterogeneous and included activities of daily living (adl)-targeted interventions [ , ], re-orientation [ ], pet therapy [ ] and music therapy [ - ]. physical therapy studies evaluated either light therapy [ - ] or exercise therapy [ ]. staff education interventions focussed either around communication [ - ] or goal-setting [ ]. seven studies targeting prescribing of medications looked at incorporating pharmacist review, with or with- out physician involvement, into clinical pathways on or after admission to care home [ - , - , ]. other, more targeted interventions considered protocols for the withdrawal of hypnotics [ ], neuroleptics [ , ], anti- depressants [ ] and anti-parkinsonian [ ] drugs. two studies evaluated the effects of specific antibiotic proto- cols on prescribing [ , ]. six studies evaluated the im- pact of staff education on prescribing, three considered teaching on psychopharmacology [ , , ], one on gen- eric prescribing issues [ ], one on antibiotics [ ] and one on pain management [ ]. the majority of studies targeting nutrition evaluated nutritional supplementation using vitamin, mineral, and/ or protein-energy supplementation [ , , - , ]. three studies, all from the same authors, evaluated the effect of megestrol acetate on nutritional biomarkers [ - ]. other studies evaluated the effect of flavour enhancers [ ], dietary restriction [ ], family-style din- ing arrangements [ , ] and the provision of feeding assistance [ ]. studies targeting influenza in residents predominantly compared doses or types of vaccine [ - , , , - ]. three studies compared influenza vaccination with placebo [ , , ] and two with usual care [ , ]. six evaluated neuraminidase inhibitors [ - ]. studies targeting quality of life were heterogeneous. under this heading, studies evaluating psychological or behavioural interventions evaluated group or individ- ual therapies to build self-esteem [ , ] or reminis- cence therapy [ , ]. occupational therapy-oriented studies to improve quality of life evaluated spectacle correction of eyesight, engagement in teaching and pets [ - ]. physical therapy studies to improve qual- ity of life evaluated tai chi, back rubs and functional figure prisma flow diagram. gordon et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / incidental training [ - ]. staff training interventions to improve quality of life evaluated teaching about end- of-life care, dementia management and conflict reso- lution [ - ]. figure number of articles published by year. studies targeting depression evaluated exercise therapy [ - , , ], light therapy [ ] and yoga [ ]. there were four studies of antidepressants [ - ], one of reminiscence [ ] and one of self worth therapy [ ]. table methodological attributes of studies blinding double blind participant blinded only outcome assessor blinded only unblinded cluster cluster crossover individual patient individual patient crossover gordon et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / interventions targeting mobility were much more homogenous. ten physical therapy studies all evaluated forms of exercise therapy [ - ] while two of the three occupational therapy interventions evaluated multi-faceted mobility interventions [ , ]. the final study evaluated visual feedback balance training [ ]. oral health studies predominantly evaluated the role of mouthwashes, toothpastes and other oral preparations in dental hygiene [ , , , , ] but also evalu- ated toothbrushing technologies and techniques [ , , ], oral healthcare education [ , ], re- storative dentistry [ ] and denture care [ ]. one study evaluated subantimicrobial doses of an antibiotic as a treatment for chronic periodontitis [ ]. the majority of studies that evaluated falls prevention interventions focussed on multifaceted programmes [ - ]. two studies evaluated the role of vitamin d supple- mentation [ , ] and two evaluated exercise therapy [ , ]. one evaluated the role of care home govern- ance in falls documentation [ ] and one evaluated the impact of staff education on falls rates [ ]. studies targeting quality of care focussed predominantly on care home administration: four examined quality assur- ance programmes [ - ], two the implementation of advanced care planning or advanced directives [ , ], one communication with families [ ] and one resident relocation [ ]. the remaining studies evaluated the im- pact of staff education on bathing [ ], communication [ ] and death and dying [ ]. of the less frequently studied areas, large cohorts were seen in studies targeting fractures and osteoporosis. these areas were also notable for the similarity of the interventions studied and outcome measures recorded: all eight fracture studies evaluated hip protectors [ - ] and four [ - ] out of seven osteoporosis stud- ies evaluated calcium and vitamin d therapy, with or without bisphosphonates, whilst a further study evalu- ated alendronate as a standalone therapy [ ]. ten studies evaluated case management in the care home setting. the effect of psychiatric case management was evaluated in six studies, two on behavioural disturb- ance [ , ], two on depression [ , ] and two on quality of life [ , ]. four studies evaluated broader assess- ment and management taking account of somatic, psycho- logical and environmental issues, which might be termed comprehensive geriatric assessment [ , , , ]. one study evaluated protocol-driven disease management for copd by care home nurses [ ]. conclusions these findings provide a unique resource for those pro- viding health care to the care home sector, collating for the first time the range of interventions and outcomes that have been tested using rcts specifically in care homes. there have been a considerable number of rcts of interventions specifically in care homes ( between and ). these studies are relatively recent, since half of them were published in the last years. they evaluated a diverse range of interventions such as light therapy, staff training and oral hygiene and an equally diverse range of targets such as reducing falls, increasing weight or improving mood. the studies were mostly functional ( behaviour studies, prescribing studies, malnutrition studies) rather than disease based ( study each for uti and copd). over a quarter of papers focussed on mental health or behaviour. despite our use of systematic searching, we found no previously published studies that had collated this literature. a limitation of this review is the geographical distribu- tion of papers, with the majority of studies arising from the usa and relatively few from non-english speaking nations, thus reducing the generalisability of the findings worldwide. our decision to select only rcts means that we have not collated the entire evidence base for inter- ventions in care homes and are likely to have missed several important studies as a consequence. such studies would include those focussing on policy, facility organizational characteristics and the ways in which care homes interact with other care services, including the health service – these have been recognised to be im- portant drivers of care quality but have been studied by means other than rct [ ]. it is possible that staff trained in the care home setting – as some doctors are in the netherlands or usa – are aware of many of these studies but it is less likely that those who provide health care to care homes as part of generic primary care will be familiar with them. the re- cent growth in the number of papers means that even health care professionals with an interest in the area will be out of date if they have not recently consulted the lit- erature. the wide-ranging nature of the studies identi- fied will have relevance to commissioners, and health care professions including general practitioners, geriatri- cians, psychiatrists, nurses, occupational, physio- and speech and language therapists, dieticians, dentists, pharmacists and social workers – as well as care home table targets of interventions target and type of interventions number of studies number of participants behaviour pharmacological [ - ] occupational therapy, aids and appliances [ - ] physical therapy [ - ] staff education [ - ] psychological or behavioural therapy [ - ] case management [ - ] nursing, not classified elsewhere [ ] aromatherapy [ ] prescribing pharmacological [ - ] staff education [ - ] malnutrition nutritional [ - ] pharmacological [ - ] influenza vaccination [ - ] pharmacological [ - ] quality of life psychological or behavioural therapy [ - ] occupational therapy, aids and appliances [ - ] physical therapy [ - ] staff and family education [ - ] care home administration [ , ] case management [ ] nutritional [ ] nursing, not classified elsewhere [ ] depression physical therapy [ - ] pharmacological [ - ] psychological or behavioural therapy [ , ] case management [ ] occupational therapy, aids and appliances [ ] mobility physical therapy [ - ] occupational therapy, aids and appliances [ - ] oral health dental and oral health interventions [ - ] pharmacological [ ] falls occupational therapy, aids and appliances [ - ] pharmacological [ , ] physical therapy [ , ] care home administration [ ] gordon et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / table targets of interventions (continued) staff education [ ] quality of care care home administration [ - ] staff education [ - ] case management [ ] urinary incontinence occupational therapy, aids and appliances [ - ] pharmacological [ - ] physical therapy [ ] nursing, not classified elsewhere [ ] cognitive performance physical therapy [ - ] pharmacological [ , ] psychological or behavioural therapy [ , ] sleep physical therapy [ - ] pharmacological [ ] fractures occupational therapy, aids & appliances [ - ] immunity pharmacological [ - ] nutrititional [ ] physical therapy [ ] decubitus ulcers occupational therapy, aids and appliances [ , ] pharmacological [ , ] physical therapy [ , ] nursing, not classified elsewhere [ ] osteoporosis pharmacological [ - ] care home administration [ ] staff education [ ] pain case management [ , ] physical therapy [ , ] psychological or behavioural therapy [ ] pharmacological [ ] staff education [ ] physical function occupational therapy, aids and appliances [ - ] care home administration [ ] physical therapy [ ] constipation nutritional [ - ] physical therapy [ ] gordon et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / table targets of interventions (continued) respiratory infection pharmacological [ - ] care home administration [ ] physical restraint use staff education [ - ] skin health nursing, not classified elsewhere [ , ] physical therapy [ ] vitamin d deficiency pharmacological [ , ] physical therapy [ ] general health care home administration [ ] case management [ ] pharmacological [ ] swallowing pharmacological [ ] physical therapy [ ] compliance with ot [ ] copd [ ] cough reflex sensitivity [ ] dehydration [ ] dementia [ ] faecal incontinence [ ] hypertension [ ] interpersonal skills [ ] microbial colonisation [ ] uti [ ] gordon et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / staff. from a research perspective, there were few targets where multiple studies evaluated similar interventions against a common outcome measure. the obvious exceptions were influenza, falls, mobility, fractures and osteoporosis and these areas are suitable for systematic reviewing. there was great diversity of interventions and targets, such that there were few papers using the same intervention and the same target. thus, despite the large numbers of papers found, much work remains to be done to develop a robust evidence-base for each inter- vention and each target. although a detailed methodo- logical critique is beyond the scope of a systematic mapping review, the fact that the majority of studies were unblinded and did not employ cluster randomization means that many will have been methodologically flawed. in summary, these findings represent an important resource for commissioners, clinicians and researchers involved with care homes. at the very least, the diversity of interventions and outcomes illustrated should challenge nihilism towards this health care sector and encourage further innovation. competing interests the authors have no competing interests to declare. authors' contributions alg was lead researcher and also lead author. jrfg and pal contributed to the development of the keywording strategy. all authors participated in the literature review and contributed to drafting the final manuscript. all authors read and approved the final manuscript. acknowledgements this article presents independent research commissioned by the national institute for health research (nihr) under its programme grants for applied research funding scheme (rp-pg- - ). the views expressed in this publication are those of the author(s) and not necessarily those of the nhs, the nihr or the department of health. the authors would also like to acknowledge the support of the british geriatrics society, who provided an spr start-up grant in support of alg at the outset of this project. gordon et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / the medical crises in older people study group also includes: isabella robbins, jane dyas, justine schneider, sarah goldberg, rowan harwood, kathy whittamore, sarah lewis, simon conroy, anthony avery, fiona jurgens, judi edmans, lucy bradshaw, helen boardman, rachel elliot, matt franklin and davina porock. author details division of rehabilitation and ageing, university of nottingham, nottingham, uk. department of psychiatry, university of nottingham, nottingham, uk. department of health care of older people, nottingham university hospitals nhs trust, nottingham, uk. department of medicine, peterborough city hospital, peterborough, uk. received: november accepted: june published: june references . great britain department of health: care standards act . london: stationery office; . . bowman c, whistler j, ellerby m: a national census of care home residents. age ageing , ( ): – . . helton mr, cohen lw, zimmerman s, van der steen jt: the importance of 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tw, westbrook g, jarvis wr: comparison of routine glove use and contact-isolation precautions to prevent transmission of multidrug-resistant bacteria in a long-term care facility. j am geriatr soc , ( ): – . . nicolle le, mayhew wj, bryan l: prospective randomized comparison of therapy and no therapy for asymptomatic bacteriuria in institutionalized elderly women. am j med , ( ): – . doi: . / - - - cite this article as: gordon et al.: a systematic mapping review of randomized controlled trials (rcts) in care homes. bmc geriatrics : . submit your next manuscript to biomed central and take full advantage of: • convenient online submission • thorough peer review • no space constraints or color figure charges • immediate publication on acceptance • inclusion in pubmed, cas, scopus and google scholar • research which is freely available for redistribution submit your manuscript at www.biomedcentral.com/submit 	abstract 	background 	methods 	results 	conclusions 	background 	methods 	results 	conclusions 	competing interests 	sectionbib 	acknowledgements 	author details 	references psy_ .fm psychogeriatrics ; : – correspondence : dr n. motomura, national mental support center for school crisis, osaka kyoiku university, - - , midorigaoka, ikeda, osaka, japan. email: motomura@cc.osaka-kyoiku.ac.jp received june ; accepted august . original article animal assisted therapy for people with dementia naoyasu motomura, takayoshi yagi and hitomi ohyama national mental support center for school crisis, osaka kyoiku university; nursing home arontia club; and japan rescue association, osaka, japan abstract background: the effects of animal assisted therapy on patients with dementia were investigated through the use of mental state batteries. methods: the subjects were eight patients admitted in a local nursing home. their mean age was . years ± . ; four were dementia of alzheimer’s type patients, and the others were vascular dementia patients. mental state tests included the apathy scale, the irritability scale, the depression scale, the activities of daily living and mini-mental state examination. dog therapy with two dogs from the japanese rescue association took place for h over four consecutive days. results: the patients could communicate with and observe the dogs, and the dogs could interact with the humans. the results indicated no significant difference in the irritability scale, the depression scale, activity of daily living and mini-mental state examination. however, most patients had a good impression of dog therapy, and all improved their apathetic state. conclusions: these results might imply that animal assisted therapy has the possibility to influence the mental state of patients with dementia. key words: alzheimer’s disease, animal assisted therapy, patients with dementia, vascular dementia. introduction the elderly compose the fastest growing population group in japan. it is projected that in the year , % of the japanese population will be years or older. the care of people with dementia is one of the most important problems in japan today. many causes of dementia has been shown; with dementia of alzheimer’s type (dat) and vascular dementia (vd) being the most common forms of dementia. demented patients manifest many neurobehavioral problems. – for example, they demonstrate delusion, depression, apathy, irritability, anxiety, sleep disorders or difficulty in social activities. for managing such behavioral problems associated with dementia, strat- egies such as planned walking, pet therapy, an atten- tion focusing program, music and visual barriers show promising results in improving these behavioral abnormalities in western countries. – however, in japan we have only a few reports regarding the effects of animal assisted therapy (aat) for managing patients with dementia through the use of mental state batteries. , subjects and methods subjects were eight female patients admitted in a local nursing home. their mean age was . years ± . ; four were dat patients and the others were vd patients. the diagnosis of dementia was performed according to the diagnostic and statistical manual of mental disorders, forth edition (dsm iv) diagnostic criteria, nincds-adrda or nincds-airen. all of these patients agreed to attend the dog therapy activ- ities and informed consent was obtained. as there was very mild cognitive change in the subjects of present study, we did not request informed consent from their families. in the present study we did not prepare control subjects, because we could not find a matched control group. we conducted mental status tests before and after the dog therapy activity. mental status examination included the apathy scale, the irritability scale, geriat- ric depression scale (gds), physical self-maintenance scale (psms) and mini-mental state examination (mmse). the irritability tests were composed of seven questionnaires and the apathy tests; four questions. animal assisted therapy for people with dementia apathy scale is composed of five questions and evaluates activity and apathy state of the patients. scores vary from to points. irritability scale is also constructed by five questions and evaluate patients’ irritability. scores vary from point to points. gds includes questions and if the patients have more than eleven points, they may be diagnosed as ‘depressive state’. psms composes eight questions in terms of activity of daily living. these include telephone use, shopping, dining, housekeeping, washing, going outside, taking medi- cine, and managing money. mmse is composed by tests for orientation, attention, calculation, recall, rep- etition, reading and writing. the scores vary from to points. animal assisted therapy with two dogs from the japanese rescue association took place for h over four consecutive days. two therapy dogs, aged years participated in this aat program. there were three types of activities which were done by therapy dogs. first type of the activity was the communication with dogs. the dogs were introduced and the partic- ipants instructed them to sit down or wait. then they could touch the dogs or call dog’s name. the second type of activity was to observe the dog’s exercise. for examples, they could see dogs jumping into the ring. third type of the activity was that the dogs interact with the humans. results the results indicated no significant difference in the irritability scale, the depression scale, adl and mmse between before therapy and after therapy (table ). however, most patients had a good impression of dog therapy. seventy-five percent of the patients quoted that it is a fun to attend dog therapy and they like dogs very much. sixty-three percent of the patients mentioned that they like dogs better after attending this activity and they would like to attend this activity again. further- more, all improved their apathy state and a significant difference was found before and after the dog therapy (table ). discussion we conducted aat for patients with dementia and found that most of them prefer to take aat. further- more, patients with dementia had improved apathy state by taking aat. zisselman et al. reported that women with dementia who received aat had improved irritable behavior scores after treatment, although no significant differences in the multidimen- sional observation scale for elderly subjects scores (moses), which has subscale items, were found between or within groups before and after the inter- vention. their aat was for h a day for five consec- utive days. these results are almost consistent with our data although our results mainly change in the apathy scale rather than irritability scale. kongable et al. mentioned the presence of a pet dog on a special- care dat unit significantly increased social behaviors, such as greeting other people, speaking with other people or attending activities in the nursing home. on the basis of these observations we believe that aat programs are desirable components of multidis- ciplinary treatment for patients with dementia and aat is essential to increase socialization, activity and sense of mastery. as we could conduct dog therapy on only a small number of patients and could not perform a controlled study. this pilot study shows the need for further research on animal-assisted interven- tions for people with dementia. references motomura n, sawada t, inoue n, asaba h, sakai t. neurop- sychological and neuropsychiatric findings in right hemi- sphere damaged patients. jap j psychiatry neurol ; : – . seo t, motomura n et al. the significance of delusions in dementia patients of alzheimer type from clinical, neuropsycho- logical and neuroimaging view points. bulletin of osaka medical college ; : – . motomura n, tomota y et al. a study of language disorders associated with dementia of alzheimer type in japanese: a preliminary study. psychologia ; : – . fick km. the influence of an animal on social interactions of nursing home residents in a group setting. am j occup ther ; : – . forbes da. strategies for managing behavioral symptomatol- ogy associated with dementia of the alzheimer type: a system- atic overview. can j nurs res ; : – . table mental state change before and after dog therapy before therapy (sd) after therapy (sd) p -value mmse . ( . ) . ( . ) ns psms . ( . ) . ( . ) ns gds . ( . ) . ( . ) ns irritability . ( . ) . ( . ) ns apathy . ( . ) . ( . ) £ . gds, geriatric depression scale; mmse, mini-mental state examination; ns, not significant; psms, physical self-maintenance scale; sd, standard deviation. n. motomura et al. zisselman mh, rovner bw, shmuely y, ferrie p. a pet therapy intervention with geriatric psychiatry inpatients. am j occup ther ; : – . kato k, atsumi t. effects of dog therapy at geriatric hospital: the changing process of collectivity. abstracts of the third conference of the asian association of social psychology , . ogura t, ohyama h. dog therapy in rehabilitation. hodanren ; : – . american psychiatric association. diagnostic and statistical manual of mental disorders, forth edition (dsm iv). washington dc: american psychiatric association, . burns a, folstein s, brandt j, folstein m. clinical assessment of irritability, aggression and apathy in huntington and alzhe- imer disease. j nerve ment dis ; : – . yesavage ja, brink tl, rose tl et al. development and valida- tion of a geriatric depression screening scale: a preliminary report. j psychiatr res – ; : – . lawton mp, brody em. assessment of older people: self- maintaining and instrumental activities of daily living. gerontol- ogist ; : – . folstein mf, folstein se, mchugh pr. ‘mini-mental state’. a practical method for grading the cognitive state of patients for the clinician. j psychiatr res ; : – . kongable lg, buckwalter kc, stolley jm. the effects of pet therapy on the social behavior of institutionalized alzheimer’s clients. arch psychiatr nurs ; : – . the golden cord a short book on the secular and the sacred ' " ' i . . ~· / i _,., ' ~ 'v ' . \ . " ': , ., .:._ c harle s taliaferr o t h e g ol de n cor d t h e g ol de n cor d a short book on the secular and the sacred c h a r l e s ta l i a f e r r o university of notre dame press notre dame, indiana copyright © by the university of notre dame press notre dame, indiana www.undpress.nd.edu all rights reserved manufactured in the united states of america library of congress cataloging- in- publication data taliaferro, charles. the golden cord : a short book on the secular and the sacred / charles taliaferro. pages cm includes bibliographical references and index. isbn- : - - - - (pbk. : alk. paper) isbn- : - - - (pbk. : alk. paper) . god (christianity) . life—religious aspects—christianity. . self—religious aspects—christianity. . redemption—christianity. . cambridge platonism. i. title. bt .t —dc ∞ the paper in this book meets the guidelines for permanence and durability of the committee on production guidelines for book longevity of the council on library resources. c o n t e n t s acknowledgments vii introduction c h a p t e r love in the physical world c h a p t e r selves and bodies c h a p t e r some big pictures c h a p t e r some real appearances c h a p t e r is god mad, bad, and dangerous to know? c h a p t e r redemption and time c h a p t e r eternity in time c h a p t e r glory and the hallowing of domestic virtue notes index vii a c k n o w l e d g m e n t s i am deeply grateful for the patience, graciousness, support, and encour- agement of the university of notre dame press’s senior editor, charles van hof. for help in preparing the manuscript and for editorial com- ments and research, i am in debt to tricia little, olivia james, therese cotter, rebecca dyer, elisabeth granquist, aaron stauffer, matt rohn, alexis anne arnold, sam dunn, andrea ohles, eric erfanian, and julia megumi ortner. for comments on earlier versions of this text, i am most grateful to elsa marty, natasha fredericks, joshua and jenna farris, and two anonymous reviewers for the university of notre dame press. i also thank ann aydelotte for her expert copyediting. i have learned a great deal from jil evans through our co- authorship of the image in mind, and i am infinitely grateful for our many exchanges on the themes of the golden cord. as always, i dedicate this work to jil with love. it is also for the great conversation, a two- year course on great works of literature, philosophy, and art with kathryn ananda- owens, and david booth, for truly great conversations that surround the central themes of the book. in their company i found (as i hope all who read this may find) an ex- traordinarily deep and caring fellowship, in which disagreements were surrounded by an evident, ardent care for each other. at best, i suggest that augustine’s account of philosophical camaraderie is ideal: and friendship had other charms to captivate my heart. we could talk and laugh together and exchange small acts of kindness. we could join in the pleasure that books can give. we could be grave or gay together. if we sometimes disagreed, it was without spite, as a man might differ with himself, and the rare occasions of dispute were the very spice to season viii t h e g o l d e n c o r d our usual accord. each of us had something to learn from the others and something to teach in return. if any were away, we missed them with regret and gladly welcomed them when they came home. such things as these are heartfelt tokens of affection between friends. they are the signs to be read on the face and in the eyes, spoken by the tongue and displayed in countless acts of kindness. they can kindle a blaze to melt our hearts and weld them into one. i also must express my utmost gratitude to mr. and mrs. t, who were at the beginning and who impressed on me the important difference be- tween cleverness and wisdom and the vital need to love wisdom, espe- cially when this seems profoundly unfashionable. some of the arguments on naturalism, the mind- body relationship, the problem of evil, redemption, and glory have been explored in public presentations at st. olaf college (especially the last lecture of , , and ), oxford university, st. andrews university, washington and lee university, marquette university, macalester college, augustana college, ursinus college, pennsylvania state university, indiana univer- sity, grand valley state university, middlebury college, copenhagen university, and the university of wisconsin. i am deeply grateful for dia- logues on each of these occasions. the work on redemption is seriously influenced by discussions with paul reasoner and by our collaboration on a manuscript on redemption. i am also indebted to craig lindahl- urben for many years of conversation on the seductive nature of glory. and i gratefully acknowledge my immense debt to david weir, a friend, wise counselor, and mentor throughout my life, who has taught me great things about the secular and the sacred. . confessions of saint augustine, trans. r. s. pine- coffin (new york: viking penguin, ), book , p. . introduction a woman once told the author of for whom the bell tolls and death in the afternoon, ernest hemingway, that she preferred stories with happy endings. hemingway is said to have replied: “madame, all stories, if con- tinued far enough, end in death, and he is no true storyteller who would keep that from you.” it certainly appears that hemingway has a point. after all, as jerry walls points out in an otherwise cheerful book on christian views of the afterlife, all marriages will end in death or divorce. his observation may be extended: all friendships, romances, family ties, professor- student relations, author- editor- and- reader relations, business partnerships, and so on, appear to end either at death or some time before death by way of quarrels, breakups, accidents, a failure of energy or interest, and the like. beyond our individual fate, and the ending of all our relationships in this life, it seems that our story as a species on earth is not bound for a cheerful conclusion. modern cosmologists claim that our sun is roughly halfway through its life, and that in about . billion years the sun will have run out of hydrogen, collapse, and then (using contemporary jargon) become a “red dwarf ” and then a “black dwarf.” in this process the earth will be vaporized, and then what is left of our former solar system will drift along with the rest of the milky way on its collision course with our neighbor- ing andromeda galaxy. all this seems to get rather close to what pierre t h e g o l d e n c o r d teilhard de chardin, the french jesuit paleontologist and mystic, called “absolute death.” multiply to your heart’s content the extent and duration of progress. promise the earth a hundred million more years of continuous growth. if, at the end of that period, it is evident that the whole of consciousness must revert to zero, without its secret essence being garnered anywhere at all, then, i insist, we shall lay down our arms—and mankind will be on strike. the prospect of a total death (and that is a word to which we should devote much thought if we are to gauge its destructive effect on our souls) will, i warn you, when it has become part of our consciousness, immediately dry up in us the springs from which our efforts are drawn. whether or not “total death” is as dispiriting as teilhard de chardin sug- gests, it would be the ultimate ending of the story of the cosmos from a hemingway perspective. this book is a response to the secular naturalism that lies behind hemingway’s conjecture and the above portrait of life’s passing signifi- cance. while “naturalism” will need to be more carefully defined later, at the outset it can be taken as the thesis that nature alone exists and that there is no transcendent god, soul, or afterlife. the key thesis of natural- ism is that, while you and i may be passionately committed to values, the cosmos itself is utterly impersonal and without purpose. in the view from nowhere, an important book that includes a section on the mean- ing of life, thomas nagel observes that “[f ]rom an external view of the universe, which abstracts from our own position in it, it . . . wouldn’t have mattered if we had never existed.” nagel writes eloquently about the ten- sion between the importance we feel (from our own point of view) about our life and death and the complete indifference of the cosmos itself. “from far enough outside my birth seems accidental, my life pointless and my death insignificant, but from inside my never having been born seems nearly unimaginable, my life monstrously important, and my death catastrophic.” of course, naturalists relish and profoundly value life, and even the cosmos. but, by their lights, the cosmos is not something that can or does care about its constituents. the cosmos does not itself have introduction some kind of objective meaning or purpose, nor does it exist because it is good or valuable in itself. the main thesis—or question—that this book addresses is whether there are signs all around us that we live in a created order and are made for something other than absolute death. i will nail my colors to the mast at the outset: i side with a form of christianity that received a brave, ex- traordinary expression in a mid- seventeenth- century movement in eng- land called cambridge platonism. members of this movement—henry more, ralph cudworth, benjamin whichcote, peter sterry, and john smith among others—developed a nonmechanistic, nonmaterialistic phi- losophy that gave center place to the love of the good, the true, and the beautiful. they thought that we are surrounded in ordinary experience by signs of god’s living, abundant reality. and they upheld this funda- mentally positive view of reality amid the violence and ugly strife of the english civil war, which, while it did not involve absolute death, involved the death of tens of thousands. the cambridge platonists held that at the heart of all reality is absolute life. they probably would not be at all unsettled by the current predictions of the end of life in our cosmos in contemporary cosmology. after all, the new testament itself predicts an end of the cosmos (matt. : ). but because of the new testament faith in a god of powerful love, there is also the promise of a new cosmos (rev. : ). the cambridge platonist view can be traced from the new testa- ment, especially the johannine sources (in john : , jesus sees his life work as bringing about abundant life) through the alexandrian platonists clement of alexandria and origen, and through the florentine academy and the wonderful marcilio da ficino. in terms of popular twentieth- century christian writers, something of cambridge platonist spirituality may be seen in the works of c. s. lewis, j. r. r. tolkien, dorothy sayers, and charles williams. the contrast between nagel’s impersonal cosmic vision and the christian platonist position could not be clearer. while nagel sees a severe clash between our personal, individual values and the impersonal nature of the cosmos (or life as viewed from an objective or external point of view), cambridge platonist peter sterry believes that we are invited to relish the great sea of divine love: t h e g o l d e n c o r d dear reader, if you would be led to that sea, which is as the gathering together, and confluence of all the waters of life, of all truths, goodness, joys, beauties, and blessedness, follow the stream of the divine love, as it holds on its course, from its head in eternity through every work of god, through every creature. so shall you be not only happy in your end, but in your way, while this stream of love shall not only be your guide by the side, but shall carry you along in its soft and delicious bosom, bearing you up in the bright arms of its divine power, sporting with you all along, washing you white as snow in its own pure floods, and bathing your whole spirit and person in heavenly inexpressible sweetness. a dinner party with virginia woolf or a summer evening with w. h. auden? the difference between secular naturalism versus cambridge platonist philosophies may be compared to two evening parties. a secular naturalist- style party may be imbued with humor, friendship, romance, and more. these goods, however, are enjoyed while all that is outside the dinner party is hostile and bleak. the scene is akin to virginia woolf ’s description in to the lighthouse. after a rough start, the dinner party comes to life: now all the candles were lit up, and the faces on both sides of the table were brought nearer by the candlelight, and composed, as they had not been in the twilight, into a party round a table, for the night was now shut off by panes of glass, which, far from giving any accurate view of the outside world, rippled it so strangely that here, inside the room, seemed to be order and dry land; there, outside, a reflection in which things wavered and vanished, watery. some change at once went through them all, as if this had really hap- pened, and they were all conscious of making a party together in a hollow, on an island; had their common cause against that fluidity out there. in the secular naturalist framework, however, the party and dinner part- ners all pass or seem to pass (especially if memories fade) into oblivion. introduction at the end of the evening, there is a haunting passage in which one of the main characters, mrs. ramsay, realizes that, in a sense, the party is already gone: “with her foot on the threshold she waited a moment longer in a scene which was vanishing even as she looked, and then, as she moved and took minta’s arm and left the room, it changed, it shaped itself differently; it had become, she knew, giving one last look at it over her shoulder, al- ready the past.” compare woolf ’s dinner party with the account by the british poet w. h. auden of an experience after a summer dinner that helped to bring him back to the christian faith in which he had grown up: one fine summer night in june i was sitting on a lawn after dinner with three colleagues, two women and one man. we liked each other well enough, but we were certainly not intimate friends. . . . we were talk- ing casually about everyday matters when quite suddenly and unexpect- edly . . . i felt myself invaded by a power which, though i consented to it, was irresistible and certainly not mine. for the first time in my life i knew exactly . . . what it means to love one’s neighbor as oneself. i was certain, though the conversation continued to be perfectly ordinary, that my three colleagues were having the same experience. . . . my personal feelings towards them were unchanged—they were still colleagues, not intimate friends—but i felt their existences of themselves to be of infinite value and rejoiced in it. auden goes on to reflect further on the meaning and extent of that experience: i recalled with shame the many occasions on which i had been spiteful, snobbish, selfish, but the immediate joy was greater than the shame, for i knew that, so long as i was possessed by this spirit, it would be literally impossible for me deliberately to injure another human being. i also knew that the power would, of course, be withdrawn sooner or later and that, when it did, my greed and self- regard would return. the experience . . . did not vanish completely for two days or so. the memory of the experi- ence has not prevented me from making use of others, grossly and often, t h e g o l d e n c o r d but it has made it much more difficult for me to deceive myself about what i am up to when i do. for auden, the encounter with this loving power was something dynamic, a hint at something transcendent and unwavering. auden felt as though a very real power had acted upon him and brought him a kind of revelation or disclosure: the infinite value of his companions. it is interesting that while reflection on this experiential disclosure of love was part of the pro- cess that brought auden to christian faith, the experience took place at a time when he was quite skeptical about christianity and religious faith in general. his encounter is very much in keeping with cambridge pla- tonist spirituality. the cambridge platonist ralph cudworth believed that more is needed to come to an awareness of god than scholarship or the intellect. there is an essential experiential element. ink and paper can never make us christians, can never make a new nature, a living principle in us, can never form christ, or any true notions of spiri- tual things in our hearts. . . . cold theorems and maxims, dry and jejune disputes, lean syllogistical reasonings could never yet of themselves beget the least glimpse of true heavenly light, the least sap of saving knowledge in any heart. instead, cudworth writes, “the secret mysteries of a divine life” must be “kindled from within” the soul. golden cords the title of this book is derived from the several poems and stories in which a person in peril or on a quest must follow a cord or string in order to find the way to happiness or safety or home. one of the most famous of such tales involves the ancient greek hero, theseus, who sails to the island of crete to kill the minotaur, half bull, half human, who is to be found in a great labyrinth. ariadne, the daughter of the king, falls in love with the- seus and gives him a ball of string as well as a knife. theseus unrolls the introduction ball to mark his way in to the labyrinth so that after he kills the minotaur, he can find his way out. one of the great british poets, william blake, used the metaphor of a golden string, which, if followed aright, will lead us to heaven itself. in “jerusalem,” blake writes: i give you the end of a golden string, only wind it into a ball; it will lead you in at heaven’s gate, built in jerusalem’s wall. auden’s experience of love might plausibly be seen as such a golden string or cord. i would love to begin this book by sketching and then defending a robust view of religious experience, a viewpoint that would fill out auden’s premonition that summer evening when he may have encoun- tered divine love. but, if this book truly is to reply to the secular natural- ist perspective, the starting point has to be further back. one cannot very well have a confident view that persons may experience the divine if one does not believe that persons and experiences exist! thus, the first topic to be considered in chapter is the existence of consciousness itself. today there is heated debate over the reality and nature of conscious experience. i argue in chapters through that consciousness, personal identity, and experience give us some clues that theism (the thesis that there is an all- good, omnipotent, omniscient, omnipresent creator whose existence is necessary or noncontingent) is viable in today’s intellectual climate. the cambridge platonists rightly held (to my mind) that our concept of god and our concept of human nature are intertwined. they did not picture god as superhuman or some kind of projection of human at- tributes, but they held that god and creatures do have some powers in common, such as agency, love, and knowledge, and they also held that if one denies god’s existence, then one has difficulty in recognizing human agency, and knowledge, and consciousness. for them, the recognition of consciousness—human and divine—stands or falls together. in the first chapters of this book, i suggest that the cambridge platonists are on the right track. t h e g o l d e n c o r d also, in chapters through i am concerned about the existence and nature of the self. it may seem surprising to those not in professional philosophy, but some philosophers today argue that the self does not exist. some philosophers may put the point forward in a way that seems merely technical, for instance, “human beings are not substantial selves who endure over time.” but some, such as the british philosopher susan blackmore, are more straightforward. she disparages the idea of you and me as substantial selves as a delusion, and she denies both the self and our powers to act with freedom. she acknowledges the apparent existence of the self, but she believes that a properly neurologically- informed philoso- phy calls the self into question. blackmore writes, “i long ago concluded that there is no substantial or persistent self to be found in experience, let alone in the brain. i have become quite uncertain as to whether there really is anything it is like to be me.” in a sense, writing and reading this book now has a modest, nonviolent analogy with conditions that george orwell identified in his classic essay, “the lion and the unicorn,” written during the second world war. in perhaps the greatest first line in an essay, orwell begins: “as i write, highly civilized human beings are flying overhead, trying to kill me.” i would adjust this slightly: as i write, highly gifted, scientifically informed philosophers are arguing that the concept of the self as a unified individual being existing over time is a delusion. golden cords leading to eternity the ultimate goal of this short book is to explore and vindicate the experi- ence of god as an eternal, good being. some philosophers may be disap- pointed, however, to find that a book on god’s eternity will not seek to settle the question of whether god is outside of all time and thus outside the temporal passage from the past to the future. the book is neutral over the vexing philosophical arguments both pro and con. most of the clas- sical theologians in the christian tradition (such as boethius, augustine, anselm, and aquinas) have held that god transcends time: god is eternal introduction insofar as there is no before, during, or after, for god. in this view, time itself may be seen as a creation of god. alternatively, some contemporary christian theists interpret god’s eternity in terms of god being everlast- ing. god’s existence has no temporal origin or beginning and will have no end. and yet, god is not timeless or atemporal. some advocates of this position speak of god as being in a “time beyond time,” enjoying duration (a past, present, and future) but not as in the metric time of calendars or atomic clocks employed at the human level. this book is compatible with either position. (today, definitions of “eternity,” derived from aeturnus in latin, which is itself derived from aevum, “an era or time,” are usually also neutral between an eternal god being timeless or in time but without beginning or end.) both positions agree that, as tatian the syrian (second century) put it succinctly, “our god has no introduction in time.” the experiences of god as eternal to be investigated in this book will refer to that mode of life and experience to which some of the great christian mystics have testified, in which the encounter with god utterly subor- dinates temporal and transient matters to the superabundant, boundless life and love of god. part of the project of this book will be to approach and explore such experiences. as an example of these sorts of experiences, consider this testimony of the contemporary welsh poet r. s. thomas: as with st. john the divine on the island of patmos i was ‘in the spirit’ and i had a vision, in which i could comprehend the breadth and length and depth and height of the mystery of the creation. . . . i realized there was really no such thing as time, no beginning and no end but that every- thing is a fountain welling up endlessly from immortal god. there was certainly something in the place that gave me this feeling. the chapel stood in the fields, amidst the waving grass, its roof covered with a layer of yellow lichen. there were tall nettles growing around and at its side there swayed a big old tree like someone leaning forward to listen to the sermon. . . . it might have been the first day of creation and myself one of the first men. . . . the dew of its [the world’s] creation was on everything, and i fell to my knees and praised god—a young man worshipping a young god, for surely that is what our god is. t h e g o l d e n c o r d thomas does testify that in this experience “there was really no such thing as time,” and yet such an experience does not seem frozen or unchanging but dynamic. he is awestruck by god’s fecundity as a “fountain welling up endlessly,” and he is enamored by “tall nettles growing”; neither well- ing nor growing makes sense unless there is movement and change. thus, the experience of god’s creativity is so awesome that it overwhelms our chronicles and clocks, our sense of one day following another (the kind of sentiment that partly laments the mere passage of time as in “the sun also rises,” eccles. : ). thomas’s vision of god as young resonates with augustine’s recogni- tion and praise of god as ever new. in the confessions, augustine refers to god: “beauty at once so ancient and so new!” note that he does not refer to god as ancient. the implication rather is that god is ever new, both in ancient days as well as now. as it happens, augustine believes firmly that god transcends time, and i will not challenge the classical view of divine atemporality. but i will be highlighting the dynamic, rap- turous experience that augustine and other mystics report, leaving it open whether god is atemporal or everlasting, without beginning or end. the contemporary philosophical literature on god’s relationship to time is fascinating, but it is often abstract, drawing on concepts in physics and metaphysics with not a few technicalities. what seems missing is an appreciation that the early work on time by christian thinkers was often very much linked to meditations on the glory of god and the comparative transience of worldly goods. the classical early text on god’s relationship to time is boethius’ on the consolation of philosophy. philosophers have concentrated on his claims about time and eternity, god’s present, and so on, but boethius’ chief goal, which is underappreciated, was to critique worldly prestige, the pursuit of reputation, and living by and for transient glory. in this book i engage in philosophical reflection on human nature (as did boethius), but my intent is to build up a conception of the eternal god whose love can truly transform our lives into what the cambridge platonists saw as fullness of life. this testimony of fullness and regenera- tive, transcendent love of god is quite the opposite of a remark attributed to ludwig wittgenstein, who wondered whether god might half exist. introduction the original context of the remark is lost, but for augustine, the cam- bridge platonists, and r. s. thomas, god’s reality is the most real we can encounter; god is that fullness of being from which the cosmos derives its existence and continuation. in comparison with god, it is we who might half exist until we encounter god. whether this vision of god is delusional or reliable is the central question in what follows. i shall be arguing in favor of its reliability, and i shall identify three important facets of the experience of and reflection about god as eternal: it calls for the subordination of what may be called temporal or material glory (the pursuit of earthly power and fame); it involves realizing that god is the god of irrepressible life; and it involves a recognition of the hallowed nature of domestic virtue. these claims will be unpacked and explored in the last two chapters. while this book builds a case for golden cords leading to fullness of being, there will also be attention to quite the opposite. sometimes minor acts or incidental gestures can lead one to great perils and alienation from the fullness of life. a brief example will have to suffice. consider stend- hal’s novel the red and the black. one of its central characters, julien sorel, seeks to seduce madame de rénal. at first, he is intent on holding her hand in the presence of her husband: the darkness hid every movement. he ventured to place his hand close to the pretty arm which her gown left bare. troubled, no longer conscious of what he was doing, he moved his cheek in the direction of this pretty arm, and made bold to press his lips to it. madame de rénal shuddered. her husband was a few feet away, she hastened to give julian her hand, at the same time, thrusting him slightly from her. while monsieur de rénal continued his abuse of the good- for- nothings and jacobins who were making fortunes, julian covered the hand which had been left in his with passionate kisses, or so at least they seemed by madame de rénal. perhaps a trivial act, but it ultimately leads to murder and utter disaster— indeed, the opposite of a golden cord and more like the first step in tying a hangman’s knot. t h e g o l d e n c o r d situating the current project in some respects this book is a prequel. in , i published a collection of essays, written in the creative nonfiction genre, called love, love, love and other essays: light reflections on love, life, and death. the title was taken from the essay “love, love, love.” this was a short meditation on my father’s death: his last words to me repeated “love” three times (my father, ninety- five years old, was inspired by the advice in the fourteenth- century mystical text, the cloud of unknowing, which recommends re- peated use of the word “love”). in this book, however, the chapters are set forth sequentially to systematically explore the cambridge platonist philosophy of life over against secular naturalism. also the love, love, love book is, as one of my students put it, more ecstatic than backed up by arguments. she suggested that it was written (in the words of athena- goras of athens, second century) “in an ecstasy beyond the natural powers of reasoning.” the golden cord is different: while i have tried to include some elements of “creative nonfiction,” and there may be an ecstatic ut- terance or two, there are more arguments to consider. the golden cord is written for christian as well as non- christian readers. no more philosophy is presupposed than what you will find in daniel dennett’s breaking the spell. while the golden cord might well be entitled weaving the spell (dennett seeks to break the spell or apparent attraction of theism, whereas my aim is to highlight the lure and enchant- ment of theism), it is more of an inquiry that i invite you to undertake, rather than apologetics or a textbook of arguments. (i have developed arguments for theism systematically elsewhere.) in this book i do defend the coherence of theism and offer some reasons for resisting materialism and for trusting religious experience. but these are all undertaken to fill out the thesis that life may contain golden cords that lead you to the god of eternal love, rather than as part of an academic enterprise. for non- christian readers, my hope is that you will be inclined to say about this thesis (to borrow a line from a philosopher friend), “well, maybe.” i do not think the arguments presented in what follows are of decisive, unan- swerable force, but i believe they have merit in providing good reasons for embracing a cambridge platonist spirituality. and for readers who are introduction already christian, my hope is that you will find proposals and positions that call for further (and better) exploration. an important further preparatory note is in order. some christian thinkers today see christianity and platonism as bad bedfellows. pla- tonism is associated with a body- denigrating dualism of soul and body (soul = good; body = bad) in which nature and this life are a mere shadow- land of true life, unencumbered by the material world. platonism has also been associated with an unhealthy valorization of reason over against desire. the christian platonism championed by the heroes of the golden cord is not guilty: while the cambridge platonists thought that material- ism is false (the soul is not the very same thing as one’s body), they argued for the good of embodied life, the goodness of creation (the material and immaterial world), the central value of a passionate love for the good, the true, and the beautiful. and insofar as they believed in the afterlife, they saw it as a miracle rather than something that occurs willy- nilly due to the innate power of the soul. because this book is not a text in the technical platonic scholarship, readers will need to look elsewhere for a closer look at the historical plato and the many movements and ideas that he inspired. for now, i ask read- ers to set aside some of the commonplace and ill- earned associations with platonism as chapter begins with considerations of love and life in the current intellectual climate as well as in the physical world. the first chap- ter addresses the most substantial obstacle to the project of the golden cord. in that chapter as well as in some of the others, i liberally cite the writings of other philosophers so that readers can engage with their think- ing on their own terms, not always by way of a paraphrase. c h a p t e r love in the physical world midway this way of life we’re bound upon, i woke to find myself in a dark wood, where the right road was wholly lost and gone. —dante, inferno when i was in my twenties, a graduate student at harvard university and not yet midway on life’s journey, i attended a philosophy seminar on the nature of language, with a focus on metaphor. the professor requested that we come up with a sentence that expressed obvious nonsense. the usual example employed in many texts at the time was noam chom- sky’s great line, “colorless green ideas sleep furiously.” rather than invoke green ideas, the professor wrote on the blackboard: “gravity is a manifes- tation of love.” there was some forced laughter, though i felt a little un- easy when i realized that i actually believed that this “obvious nonsense” was true and foundational to life itself. t h e g o l d e n c o r d at the time, i was in a dante reading group (about twelve of us met on sunday nights in a tiny apartment on beacon hill in boston to read out loud and discuss dante’s divine comedy over wine). perhaps my professor came up with his example of “obvious nonsense” after seeing my t- shirt, which featured a reprint of gustave doré’s illustration of the beatific vision (the “celestial rose”) and the famous last lines of the para- diso: “my will and my desire were turned by love, / the love that moves the sun and the other stars.” before reveling in dante’s vision of love and delving into the ways in which earthly love may provide a path into eternal, divine love, we need to explore why such a divine expedition seems to many philosophers ab- solutely preposterous and pathetic. without a plausible challenge to the rather hostile state of play in some quarters of the world of philosophy, the task of this book will seem like a fool’s errand. intellectual climates graduate schools, and universities in general, have their own atmo- sphere. at harvard, at least in the philosophy department or, more spe- cifically, in the seminars and classes i took in the s, the atmosphere was decidedly materialistic. “materialism” can be described variously as the view either that all that exists is in space and time or that all that exists can ultimately be explained by the physical sciences, and so on. exact defi- nitions are not crucial here, except to highlight the form of materialism that lay behind my professor’s choice of examples. at harvard in the s and s, the great willard van orman quine argued that, ul- timately, references to mental realities such as beliefs, desires, and so on (including references to love) should give way to a vocabulary of science that lacked such terms. as a friend of b. f. skinner, quine preferred be- haviorist accounts of human action. daniel dennett captures the mood of the time: the prevailing wisdom, variously expressed and argued for, is material- ism: there is only one sort of stuff, namely matter—the physical stuff of love in the physical world physics, chemistry, and physiology—and the mind is somehow nothing but a physical phenomenon. in short, the mind is the brain. according to the materialists, we can (in principle!) account for every mental phenome- non using the same physical principles, laws and raw materials that suffice to explain radioactivity, continental drift, photosynthesis, reproduction, nutrition, and growth. while i postpone at the outset any serious questioning of this “wisdom,” note that dennett defines the material in terms of physical sciences— physics, chemistry, physiology. perhaps under “physiology,” the scien- tific study of the function of living systems, dennett would include a wide array of disciplines, but noticeably absent from dennett’s explicit identification of alpha modes of cognition are, for example, psy chology, soci ology, and history. it is perhaps not surprising that philosophy and theology are excluded, but dennett seems to be more confident in the reality of explanatory significance of the “physical principles, laws and raw materials that suffice to explain radioactivity, continental drift, pho- tosynthesis, reproduction, nutrition, and growth” than in the reality and explanatory power of “mental phenomenon.” but doesn’t the very process of science and the practice of explaining things and forming concepts of laws involve or even presuppose “mental phenomenon”? presumably, physicists, chemists, and physiologists have to have conscious experiences, beliefs, and desires to practice their disciplines. i leave this suggestion here as merely an observation that dennett (and some other materialists) employ a methodology that does not begin with the mental, but that does begin with a confident, perhaps “objective” view of physical laws and principles. later, i will question the wisdom of this starting point. materialism is often advanced as itself a thoroughly scientific claim. d. m. armstrong even describes materialism as a scientific “doctrine”: what does modern science have to say about the nature of man? there are, of course, all sorts of disagreements and divergencies in the views of individual scientists. but i think it is true to say that one view is steadily gaining ground, so that it bids fair to become established scientific doc- trine. this is the view that we can give a complete account of man in t h e g o l d e n c o r d purely physico- chemical terms. . . . i think it is fair to say that those scien- tists who still reject the physico- chemical account of man do so primarily for philosophical, or moral or religious reasons, and only secondarily, and half- heartedly, for reasons of scientific detail. . . . for me, then, and for many philosophers who think like me, the moral is clear. we must try to work out an account of the nature of mind which is compatible with the view that man is nothing but a physico- chemical mechanism. like dennet, armstrong is clear about his starting point and orientation. among the remarkable things in armstrong’s charge is that he is present- ing materialism not as a philosophy of science but as itself a scientific thesis. if armstrong is right, then science (to use his metaphor) says that materialism is true. some materialists are at home with allowing that there are such things as conscious states, feelings, desires, and so on, but they claim that these turn out to be material states. yet other materialists, such as dennett (though hard to pin down), quine, stephen stich, paul churchland, and patricia churchland wind up eliminating the mental as we usually think of it in terms of their final account of what exists. the british philosopher alistair hannay has a great image of the at- titude of contemporary materialists (also called physicalists): the attitude of much physicalism [to consciousness] has been that of new owners to a sitting tenant. they would prefer eviction but, failing that, are content to dispose of as much of the paraphernalia as possible while keeping busy in other parts of the house. we should, i think, feel free to surmise that the current picture of consciousness eking out a sequestered life as a print- out monitor or raw feeler fails in a quite radical way to cap- ture the facts. using this schema, my professor and his colleagues preferred evicting consciousness and the mental, while other materialists only allow for marginal mental entities. in this chapter let us consider the more radical materialists. love in the physical world the radical materialist temptation stich and many of the other radical materialists refer to our usual or ordi- nary concepts of the mental as folk psychology. they think that just as the sciences have come to see that folk astronomy is false, the same could be true for folk psychology—our commonplace assumption that there are beliefs, desires, and so on. according to stich, folk astronomy was false astronomy and not just in detail. the general conception of the cosmos embedded in the folk wisdom of the west was utterly and thoroughly mistaken. much the same could be said for folk biology, folk chemistry, and folk physics. however wonderful and imagi- native folk theorizing and speculation has been, it has turned out to be screamingly false in every domain where we now have a reasonably so- phisticated science. nor is there any reason to think that ancient camel drivers would have greater insight or better luck when the subject at hand was the structure of their own minds rather than the structure of matter or of the cosmos. paul churchland takes a similar stance. he thinks that our recognition of beliefs, desires, and the like might be on a par with the older practice of thinking that there are witches: witches provide another example. psychosis is a fairly common affliction among humans, and in earlier centuries its victims were standardly seen as cases of demonic possession, as instances of satan’s spirit itself, glar- ing malevolently out at us from behind the victims’ eyes. that witches exist was not a matter of any controversy. one would occasionally see them, in any city or hamlet, engaged in incoherent, paranoid, or even murderous behavior. but observable or not, we eventually decided that witches simply do not exist. we concluded that the concept of a witch is an element in a conceptual framework that misrepresents so badly the phenomena to which it was standardly applied that literal application of the notion should be permanently withdrawn. modern theories of mental dysfunction led to the elimination of witches from our serious ontology. t h e g o l d e n c o r d the concepts of folk psychology—belief, desire, fear, sensation, pain, joy, and so on—await a similar fate. note the radical nature of this daring possibility. could it be that we need to abandon a framework that recognizes beliefs, desires, fears, pains, and joys? if we abandon such notions, it will not make sense to claim that we believe in this new framework that treats beliefs like witches. to claim that we believe there are no beliefs would be like claiming that lots of witches think that good witches should claim that there are no witches. if we are going to get rid of both witches and beliefs, we need to let both go. a classic example of the elimination of the mental was embraced by richard rorty in the s. he thought that we might one day give up on our folk psychology: the absurdity of saying “nobody has ever felt a pain” is not greater than that of saying “nobody has ever seen a demon,” if we have a suitable answer to the question, “what was i reporting when i said i felt a pain?” to this question, the science of the future may reply, “you were reporting the occurrence of a certain brain process, and it would make life simpler for us if you would, in the future say “my c- fibres are firing,” instead of saying “i’m in pain.” in this view, we may replace mental language with references to brain and other bodily processes. this radical elimination of the mental (or at least its radical retranslation into neurological terms) has been called elimina- tivism. its high view of science has been labeled scientism. jerry fodor is prepared to use this term in describing his stance: i hold to the philosophical view that, for want of a better term, i’ll call by one that is usually taken to be pejorative: scientism. scientism claims, on the one hand, that the goals of scientific inquiry include the discovery of objective empirical truths; and on the other hand, that science has come pretty close to achieving this goal at least from time to time. the molecu- lar theory of gasses, i suppose, is a plausible example of achieving it in physics; so is cell theory in biology; the theory, in geology, that the earth is love in the physical world very old; and the theory, in astronomy, that the stars are very far away. . . . i’m inclined to think that scientism, so construed, is not just true but ob- viously and certainly true; it’s something that nobody in the late twentieth century who has a claim to an adequate education and a minimum of common sense should doubt. to fully get to radical materialism, however, one needs a minor addition: the sciences are our only means of knowing about ourselves and the world. so confident is peter ungar that a bond exists between faith in science and adherence to physicalism that he has coined the term scientificalism. one of the most popular of the radical materialists is daniel den- nett, as mentioned above. in the following passage he blasts (“reproaches” seems too tame a word) david chalmers for proposing that experience should be taken to be a fundamental datum, a fact to be explained. for dennett, experience may turn out to be an element of folk psychology that we should banish from our final account of what exists. he thinks chalmers’s confidence that experience is a datum is equivalent to claiming that the property “cuteness” must exist: we can see this by comparing chalmers’ proposal with yet one more imaginary non- starter; cutism, the proposal that since some things are just plain cute, and other things aren’t cute at all—you can just see it, however hard it is to describe or explain—we had better postulate cuteness as a fundamental property of physics alongside mass, charge, and space- time. (cuteness is not a functional property, of course; i can imagine somebody who wasn’t actually cute at all but who nevertheless functioned exactly as if cute—trust me.) cutism is in even worse shape than vitalism. [a discredited scientific theory that life functions in virtue of a vital principle of energy not reducible to the laws of chemistry and physics.] nobody would have taken vitalism seriously for a minute if the vitalists hadn’t had a set of independently describable phenomena—of reproduction, metabolism, self- repair and the like—that their postulated fundamental life- element was hoped to account for. once these phenomena were oth- erwise accounted for, vitalism fell flat, but at least it had a project. until chalmers gives an independent ground for contemplating the drastic t h e g o l d e n c o r d move of adding “experience” to mass, charge, and space- time, his proposal is one that can be put on the back burner. dennett maintains that we can be more certain that mass, charge, and space- time exists than we can be sure that experience exists. unlike dennett, some materialists seem to not see a problem in af- firming a strong form of materialism and affirming the reality of experi- ence. one popular writer and materialist who takes this position is carl sagan: i am a collection of water, calcium, and organic molecules called carl sagan. you are a collection of almost identical molecules with a different collective label. but is that all? is there nothing in here but molecules? some people find this idea somehow demeaning to human dignity. for myself, i find it elevating that our universe permits the evolution of mo- lecular machines as intricate and subtle as we. but the essence of life is not so much the atoms and simple molecules that make us up as the way in which they are put together. the question then is: can the following identity be secured? feeling elated is the very same thing as molecular activity. identity problems the reason why the more radical materialists worry about elevated feel- ings—joy and sorrow and beliefs—is because if you acknowledge them as full- fledged experiential states (sometimes called phenomenal states), it becomes difficult to see how they could be the very same things as a pack of neurons or molecular processes or the body and its processes as a whole. it seems as though you could know all about the molecular structure and physical processes of bodily life and know nothing of the experiential states involved, and vice versa. the difficulty at hand becomes apparent when you consider other identity relationships, cases in which you have only one object but two ways of identifying it. take “water” love in the physical world and “h o.” these two terms pick out the same thing, and once we grasp atomic theory we may see that water is h o; to know about water is to know about h o. philosophers have formulated what they call the prin- ciple of the indiscernability of identicals: if a is b, whatever is true of a is true of b consider these identity relations: the morning star is the evening star water is h o cassius clay is muhammad ali bayer aspirin is acetylsalicylic acid mark twain is samuel clemens in the case of each, whatever is true of one (the morning star is venus) is true of the other (the evening star is venus). and whatever is true of muhammad ali (known by you to be a famous boxer) is true of cassius clay (known by you to be a famous boxer even if you don’t know him by the name of cassius clay). if you are boxing with muhammad ali, you are boxing with cassius clay, and so on. now, consider the following. feeling elated is the very same thing as the physical- chemical processes in the brain. bear in mind that this claim involves strict identity (as with the other examples) and not merely attribution, as when i claim that the dog tiepolo is black and white. we cannot thereby claim that if you have a black and white creature, then you have tiepolo (you may instead have the dog jack). in cases of strict identity, however, there is a one- to- one identity, as in water is the very same thing as h o. in the case of identifying feelings and physical chemical processes in the brain, we have a problem, for as colin mcginn puts it, “the property of consciousness itself (or spe- cific conscious states) is not an observable or perceptible property of the brain. you can stare into a living conscious brain, your own or someone else’s, and see there a wide variety of instantiated properties—its shape, colour, texture, etc.—but you will not thereby see what the subject is experiencing, the conscious state itself.” t h e g o l d e n c o r d is whatever that is true of feeling elated also true of the physical- chemical processes to which it is supposed to be identical? it at least ap- pears not, for (to restate the earlier point) you could (in principle) know all about the physical- chemical processes of a person’s body and not know anything at all about the person’s emotional or mental state, and vice versa. in regard to the other identity cases, we do not have this problem. one can fully grasp that water is h o—this is a simple statement of composition—but we do not have this with the mental and physical. richard swinburne puts the problem facing materialism in this way: “i argue . . . that knowledge of what happens to bodies and their parts, and knowledge of the mental events which occur in connection with them will not suffice to give you knowledge of what happens to those persons who are (currently) men. talk about persons is not analysable in terms of talk about bodies and their connected mental life.” i suggest that swinburne has a good point. some philosophers claim that the identity of the mental and physical is no more puzzling than the identity of digestion with the different enzymes and organs involved or between heat and mean kinetic energy. but in the first case, once you know all about the enzymes and organs, you know all there is about di- gestion, and yet this is not the case of the mental. you might have an exhaustive physical analysis of the brain and body of a person and yet not know his mental states. consciousness and different mental states can be inferred, projected, and grasped based on a person’s testimony and on studying correlations of bodily states and mental states of other subjects and their testimony, but this is not a matter of seeing that the bodily states are identical to mental states. materialists such as frank jackson have ob- jected that our understanding of the brain could become so advanced that we can deduce a person’s mental state (what he is thinking/feeling) from his brain state. daniel von wachter responds: regardless of how plausible it is that the psychological is deducible from the physical in the way jackson describes, he fails to address the crucial point. of course, if materialism is true and if you know what kind of brain state underlies every kind of mental state, then from this informa- tion (which you may call “contextual information”), given a description love in the physical world of my brain in physical terms, you can deduce what my mental life is like. nevertheless, the point is that you cannot deduce it from the description of my brain without this contextual information. no description of my body in physical terms tells you whether i have a red image in my mind, or whether i have a headache, or whether i am thinking hard about whether is a prime number. swinburne argues that so- called scientific materialists who recognize the existence of sensations confuse causal interaction with identity. the fact that the mental and physical impact each other (say, a blow to the head causes one to lose consciousness) is no reason to think that the mental is physical: my sensations are no doubt caused by brain- events but they are not them- selves brain- events. my having a red after- image or a pain or a smell of roast beef are real events. if science describes only firings of neurons in the brain, it has not told us everything that is going on. for it is a further fact about the world that there are pains and after- images, and science must state this fact and attempt to explain it. likewise sensations are to be distinguished from the behaviour to which they give no expression—pains which they conceal or dream- sensations which they report to no one— and, if the sensations give rise to behaviour, the subject is aware of the sensation as a separate event from the behaviour to which it gives rise. the life of conscious experience seems a reality ignored by hard materialism. the full acknowledgment of the reality of consciousness causes some ma- terialists to wonder whether we will ever come to understand how it is that mental states (say, like feeling elated) could be the same as physical states. michael lockwood writes: i count myself a materialist, in the sense that i take consciousness to be a species of brain activity. having said that, however, it seems to me evident that no description of brain activity of the relevant kind, couched in the currently available languages of physics, physiology, or functional or com- putational roles, is remotely capable of capturing what is distinctive about t h e g o l d e n c o r d consciousness. so glaring, indeed, are the shortcomings of all the reductive programmes currently on offer, that i cannot believe that anyone with a philosophical training, looking dispassionately at these programmes, would take any of them seriously for a moment, were it not for a deep- seated conviction that current physical science has essentially got reality taped, and accordingly, something along the lines of what the reductionists are offering must be correct. to that extent the very existence of con- sciousness seems to me to be a standing demonstration of the explanatory limitations of contemporary physical science. consider an objection: but couldn’t the apparent difficulty arise sim- ply because our mental terms (joy, sorrow) are just part of how we know about physical- chemical states? one thing can be known in more than one way. for example, i might know you as my sister’s best friend, but i do not know that you are a secret agent. the pack of neurons or physi- cal processes unique to sagan might be known by way of certain mental concepts, and yet this is not evidence that sagan is more than a pack of neurons. the difficulty here, though, lies in the fact that when it comes to the mental, how it appears is a central feature of its nature. feeling elated, like feeling pain, joy, and so on, is a way of experiencing. so there is a dis- analogy with the case of the sister analogy—we may easily see how a single person may appear differently, and we can even see that these two appear- ances are different (being a sister’s best friend is not the same as being a spy). when it comes to the physical- chemical processes, however, there is noth- ing about these processes that we can observe as appearing elated or any such mental state. dennett’s effort to claim that it only appears that there are appearances seems to collapse because it implicitly requires there to be appearances in the first place. t. l. s. sprigge aptly observes that we can be certain of the reality of our conscious thinking, even if we are mistaken about what we are thinking: let us consider first the implications of saying that it is logically pos- sible that one’s consciousness, over a lifetime, might thus be totally de- lusive. it remains true, nonetheless, that the fact that the precise series of love in the physical world experiences has taken place is a fact which includes, or logically implies, a whole lot of things as to what you have thought to be the case. it might include, for example, the fact that you were once thinking it the case that your daughter was on a train to york. that is, it does not really make sense to think that, after a long stretch of experience, it is an open question what, on various occasions, you were thinking. as a character in charles williams’s novel the shadows of ecstasy reflects, on the evident character of appearances: a thing that seemed had at least the truth of its seeming. sir bernard’s mind refused to allow it more but it also refused to allow it less. it was for each man to determine how urgent the truth of each seeming was. . . . a thing might not be true because it appeared so to him, but it was no less likely to be true because everyone else denied it. the eyes of rosamond might or might not hold the secret origin of day and night, but if they apparently did then they apparently did, and it would be silly to deny it and equally silly not to relish it. some materialists who recognize the difficulty of identifying feelings and other mental states with brain activity resort to the concept of repre- sentations. they agree that our feeling elated seems unique and perhaps immaterial, but it is actually a mental representation of a fundamentally physical reality. feeling pain, then, may constitute how we represent some physical process. these materialists concede that mental terms are words that mean something different from physical terms, but they both refer to the same physical phenomenon. and yet the difficulty remains: so long as one does not eliminate how pain or being elated feels, those feelings must be recognized as real states and activities. one does not feel the concept of pain; rather, one undergoes the feeling itself. thus, when you or i report that we are feeling pain, the feeling itself is the content and meaning of our report. if someone replies, “it would be better if you simply reported that brain activity x is taking place,” this different form of reporting would do nothing to alleviate what is crucial: how you feel, or, putting the point in a neurological context, how your brain and central nervous system t h e g o l d e n c o r d were making you feel. actually, the case for distinguishing the mental and physical can even be intensified beyond this knowledge argument (if the mental is the physical, to know one is to know the other). one may also entertain the following: it is possible to have all the physical- chemical pro- cesses specified by sagan but have no mental life at all. admittedly, this would be a bizarre case of what may be called a zombie, a creature that acts and looks like it is thinking and feeling but is not. the idea of a zombie is more at home in science fiction than in a laboratory, but the apparent coherence of such a creature is a challenge to those who embrace an identity materialist theory. let us consider such bizarre cases in the next chapter, but for now i simply note that it is a possible worry and a reason why some materialists are drawn to eliminate the mental altogether. eliminating the mental is, however, not something one wants to do without seriously counting the cost. for many (but not all) philosophers, such an elimination would be like checking into a hospital in order to eliminate a headache through decapitation. going shopping and the deep background the reason why many people are drawn to getting rid of the mental is that if you recognize its existence, then you need to account for where it came from. a student of mine once put the point this way: “if the men- tal is different from the physical, how did the mental come into being? did it go shopping?” dennett and others posit a fundamentally physical world that is not, at its core, purposive or mental. for them, a genuine explanation of the world must ultimately describe it in terms that are nonintentional. there is no place to go outside the physical world to pur- chase nonphysical, intentional properties or things (souls). according to dennett, “the account of intelligence required of psychology must not of course be question- begging. it must not explain intelligence in terms of intelligence, for instance by assigning responsibility for the existence of intelligence in creatures to the munificence of an intelligent creator.” moreover, george rey has the same view: “any ultimate explanation of love in the physical world mental phenomena will have to be in non- mental terms, or else it won’t be an explanation of it. there might be explanations of some mental phe- nomena in terms of others—perhaps hope in terms of belief and desire— but if we are to provide an explanation of all mental phenomena, we would in turn have to explain such mentalistic explainers until finally we reached entirely non- mental terms.” later in chapter , we will explore the ways in which the dennett- rey strategy can be challenged by an alternative, broader framework. but for now i simply note that the motivation behind radical materialism is a strong drive to come up with a comprehensive philosophy that does not leave intelligence, consciousness, belief, and so on as irreducible realities. these phenomena all need to be explained in terms of nonintelligent, nonconscious forces. according to radical materialists, so long as we do not get underneath and account for how and where the self and the men- tal in general come from and are constituted, we have failed to explain the self. dennett writes: in other words, the substantial self cannot form part of the final theory of what exists. “you’ve got to leave the first person [substantial self ] out of your final theory. you won’t have theory of consciousness if you still have the first person in there, because that was what it was your job to explain. all the paraphernalia that doesn’t make any sense unless you’ve got a first person in there, has to be turned into something else. you’ve got to figure out some way to break it up and distribute its powers and opportunities in to the system in some other way.” dennett thereby seeks to get underneath the self or mind or subject as an independent, irreducible reality. thus, he prefers to see the brain as a system without a subject: and the trouble with brains, it seems, is that when you look in them, you discover that there’s nobody home. no part of the brain is the thinker that does the thinking or the feeler that does the feeling, and the whole brain appears to be no better a candidate for that very special role. this is a slip- pery topic. do brains think? do eyes see? or do people see with their eyes t h e g o l d e n c o r d and think with their brains? is there a difference? is this just a trivial point of “grammar” or does it reveal a major source of confusion? the idea that a self (or a person, or, for that matter, a soul) is distinct from a brain or a body is deeply rooted in our ways of speaking, and hence in our ways of thinking. perhaps the most sustained advocates of eliminativism are paul churchland and patricia churchland. in a book by paul churchland, the engine of reason, he warns that many of us who approach his book assume that there are such things as beliefs, desires, and the like: you came to this book assuming that the basic units of human cognition are states such as thoughts, beliefs, perceptions, desire, and preferences. that assumption is natural enough: it is built into the vocabulary of every natural language. . . . these assumptions are central elements in our stan- dard conception of human cognitive activity, a conception often called ‘folk psychology’ to acknowledge it as the common property of folks gen- erally. their universality notwithstanding, these bedrock assumptions are probably mistaken. but, he continues, “is our basic conception of human cognition and agency yet another myth, moderately useful in the past perhaps, yet false at edge or core? will a proper theory of brain function present a signifi- cantly different or incompatible portrait of human nature? i am inclined toward positive answers to all of these questions.” in such a world of elimination, it appears that not only might it be absurd to think that gravity is a manifestation of love, but love itself might be something that needs to be scrutinized as a dispensable, respectable category. in a famous paper, rorty advocated such an elimination that is substantial: “every speech, thought, theory, poem, composition and philosophy will turn out to be completely predictable in purely natural- istic terms. some atoms- and- the- void account of micro- processes within individual human beings will permit the prediction of every sound or in- scription which will ever be uttered. there are no ghosts.” on this view, rather than reporting to someone “i love you,” perhaps one should say, love in the physical world “my c- fibres are firing.” even uttering “my c- fibres are firing” will have been brought about by nonmental, unthinking causes. what happens to the self on dennett’s view? dennett maintains that we must choose either materialism or dualism, the view that persons are nonphysical and yet embodied, but on his view dualism is utterly and completely a nonstarter: “this fundamentally anti- scientific stance of dualism is, to my mind, its most disqualifying feature, and is the reason why in this book i adopt the apparently dogmatic rule that dualism is to be avoided at all costs. it is not that i think i can give a knock- down proof that dualism, in all its forms, is false or incoherent, but that, given the way dualism wallows in mystery, accepting dualism is giving up.” dualism is also unacceptable on scientific grounds: no physical energy or mass is associated with them [souls]. how, then, do they get to make a difference to what happens in the brain cells they must affect, if the mind is to have any influence over the body? a fundamental principle of physics is that any change in the trajectory of any physical entity is an acceleration requiring the expenditure of energy, and where is this energy to come from? it is this impossibility of “perpetual motion machines,” and the same principle is apparently violated by dualism. this confrontation between quite standard physics and dualism has been end- lessly discussed since descartes’s own day, and is widely regarded as the inescapable and fatal flaw of dualism. according to paul churchland, dualism is incompatible with contem- porary science: “it will be evident from the rest of this book that this familiar hypothesis [dualism] is difficult to square with the emerging the- ory of cognitive processes and with the experimental results from several neuro sciences. the doctrine of an immaterial soul looks, to put it frankly, like just another myth, false not just at the edges, but to the core.” but if dual ism does not provide grounds for selfhood, materialists such as churchland are prepared to question the very existence of the self: “but t h e g o l d e n c o r d who can be watching this pixilated show? the answer is straight- forward: no one. there is no distinct ‘self ’ in there, beyond the brain as a whole. on the other hand, almost every part of the brain is being ‘watched’ by some other part of the brain, often by several other parts at once.” churchland does not see that eliminativism will threaten to bring in a loveless, mechanical worldview and, perhaps, to put on display his settled view on the compatibility of eliminativism and his philosophy of personal relations. he includes several personal allusions in the engine of reason. there is, for example, a photograph of his daughter and her “soul- mate,” which is then analyzed in terms of retina- visual cortex interaction. and there is an mri image of patricia churchland’s brain. churchland comments: “this particular brain is in fact well known to me via more conventional information pathways. it is the brain of my wife and col- league, patricia churchland, and it is very dear to me.” he even uses posi- tive language of the soul in stating his final position: “one’s first impulse, perhaps, is to see the vocabulary and framework of a general theory of the brain as something alien and cold. but it will not be alien if it depicts all of us, at last, as we truly are. . . . whatever the distractions, we must continue to exercise our reason. and whatever the temptations we must continue to nurture our souls. that is why understanding the brain is so supremely important. it is the engine of reason. it is the seat of the soul.” can churchland retain all the emotion and passion of love if we do think that beliefs, desires, and so on, are part of a false framework? where is the love? let’s assess the radical materialist stance. can paul churchland have his eliminativism and the love of his life at the same time? regrettably, it is not very clear how he can succeed both in advancing eliminativism and redeeming the promise that it will assist us in an effort to “nurture our souls” and care for one another. obviously the brain sciences can assist us insofar as they enable us to treat physiological illnesses and the organic bases for psychological dysfunction. they provide the nonelimi- native philosopher with insights into the material underpinnings of our love in the physical world mental life. but it is not clear how we can make use of notions such as “assist,” “care,” and so forth, if we must shed bedrock assumptions about thoughts, beliefs, perceptions, desires, and preferences. in most if not all cases, “care,” “compassion,” and “love” make sense only within a concep- tual context of beliefs and desires and preferences. at a minimum, love between persons seems to involve beliefs about oneself, beliefs about the beloved, and some concern for another’s well- being. in the engine of reason, we are not given a clear guide as to how, in folk language, what we refer to as “love,” “care,” “compassion,” and so on can be given any purchase in an eliminative world. these personal terms seem to be at the heart of the folk psychology that eliminativists are prepared to jettison, along with any talk of witches. one of the problems facing the radical materialists is that they as- sume we have a clear, problem- free understanding of the physical world and face the puzzlement of trying to figure out how love and other mental states might fit in. dennett and the churchlands set up a supposedly problem- free picture of ourselves in the brain sciences and other physi- cal sciences and then lampoon anyone who would seek to go beyond the physical sciences in an account of human life. public enemy number one (for dennett) is any form of dualism in which a person is seen as an embodied soul or mind or as a mixture of distinct properties, some physi- cal, and some nonphysical. following his teacher, gilbert ryle, dennett depicts dualism as positing a kind of ghost in our bodies (to be explored in the next chapter). but is the above intellectual climate the only one around? or is it even stable? consider dennett’s claim again that we should be skeptical about the existence of experience. but what is more evident: the fact that we have experiences, or the latest finding in theoretical physics? the latest physics seems anything but stable. modern physics has certainly desta- bilized a commonsense concept of the material world, for, as bertrand russell once observed, “matter has become as ghostly as anything in a spiritual séance.” more recently, and with a little less hyperbole, noam chomsky observed: “the supposed concepts of ‘physical’ or ‘material’ have no clear sense.” the prestigious oxford companion to philosophy entry “materialism” underscores the fluctuations in our concepts of the t h e g o l d e n c o r d physical world and how these make materialism as a theory less clear and commonsensical: materialism. basically the view that everything is made of matter. but what is matter? probably the most innocent and cheerful acceptance of it comes right at the start of materialism with democritus of abdera (in northern greece) in the fifth century bc, for whom the world consisted entirely of ‘atoms’, tiny, absolutely hard, impenetrable, incompressible, indivisible and unalterable bits of ‘stuff’, which had shape and size but no other properties and scurried around in the void, forming the world as we know it by jostling each other and either rebounding (despite being incompressible) or getting entangled with each other because of their shapes. they and the void alone were real, the colours and flavours and temperatures that surround us being merely subjective…this model has lasted, with various modifications and sophistications, right down until modern times, though the notion of solidity was causing qualms at least as early as locke. but in the last century all has been thrown into confusion by einstein’s famous e= mc and also by general relativity. . . . all this, however, has had remarkably little overt effect on the various philosophical views that can be dubbed ‘materialism’, though one might think it shows at least that materialism is not the simple no- nonsense, tough- minded alternative it might once have seemed to be [emphasis mine]. in light of such changes, it is difficult to plausibly claim, as dennett does, that we should be more confident in the posits of contemporary physics than confident that conscious experience exists. in fact, it is hard (nearly impossible, i suggest) to imagine any science at all unless one recognizes the existence of experience. after all, isn’t scientific inquiry based on mul- tiple, repeatable conscious experiences that scientists codify and research? rather than begin with the physical sciences, why not begin with the fact that there are scientists? i assume that scientists exist and that they have experiences and engage in inquiry; they have beliefs about the brain, human anatomy in general, and so on. let’s further assume that authors such as dennett exist and write books for good reasons. i suggest that in philosophy one’s starting point is vital, and if we are looking for the least love in the physical world problematic starting point, why not assume that there is thinking, expe- riencing, and assuming? thus, rather than begin with the brain sciences and then ask about ghosts, why not begin with the self and ask how the brain sciences can illuminate or help account for our life of thinking, feeling, having emo- tions and values? i suggest that we begin with what quine and others call the mental (the fact that we experience, have feelings, and so on). this preferred starting point seems more foundational than any other alterna- tive and would correct the love affair that some materialists have for a third- person point of view. the importance of beginning with the mental can be highlighted by considering the disanalogy of vitalism and consciousness. dennett rightly points out that vitalism can be critiqued effectively when we focus on the processes (reproduction, metabolism, self- repair) that the vital principle or energy is supposed to explain, but in the case of the mental, thinking, feeling, sensing, and so on are (to use dennett’s analogy) like reproduc- tion, metabolism, and self- repair: the mental is the given, that which we know in first- person direct experience. the mental is not posited or pro- jected but is, rather, a condition for positing or projecting or arguing that, as dennett suggests, a colleague’s interest in consciousness is akin to being interested in cuteness. we can then scientifically discover correlations of the mental and physical, mapping out the neurological conditions en- abling persons to function as thinking, acting, feeling beings. many years ago, h. h. farmer stated lucidly the problem with for- getting the first- person perspective: if, however, we seek to reflect upon and to grasp the meaning and purpose of the world as a whole . . . then clearly this attitude [the setting aside of first- person subjectivity in the name of “objectivity”], normal and proper elsewhere, will not do. plainly, if we are going to look at and seek to know the world as a whole, we must no longer omit to notice ourselves as look- ing and knowing; for we, as looking and knowing, and knowing that we are looking and knowing—that is to say as persons—are certainly part of the world taken as a whole. the world taken as a whole cannot be merely the world about us; it must be the world which includes us. t h e g o l d e n c o r d if farmer is correct, then churchland and dennett seem bound to elimi- nate what we know as the first person (we may know directly that we are conscious, experiencing selves) because their whole form of inquiry neglects the point of view (experiences) of the inquirer. the problem with eliminativism is that it not only conflicts with what appears to most of us to be the case, but it also seems to undermine its aim: inquiry. inquiry involves intentional, purposive agency about theo- ries of what exists. there is, in other words, an aboutness to inquiry: having inquiry is about the world or shakespeare or whatever. the problem with rorty’s proposal about substituting talk of beliefs with talk of c- fibres is that we still need an account of what the c- fibres are about. imagine an eliminativist coming up to you and rather than saying, “please consider whether eliminativism is true,” she says, “my c- fibres are firing.” no mat- ter how complete and complex the account of the brain, we still need to know what the c- fibres are about, and we might even want to know how the c- fibres and your nervous system make you feel. the eliminativist may propose that we translate the terms “c- fibres firing” into claims such as “eliminativism is true”—but this does not make it any more plausible that “c- fibres firing” is a thought than if i translate the phrase “i am happy” into “i am miserable,” and then conclude that happiness is misery. we have seen various passages cited earlier in which dennett seems highly skeptical about conscious experiences. is he able to sustain this position consistently? i suggest that he is not. in a book critiquing reli- gion, dennett relates an anecdote in which he seems to fully recognize the primacy of the mental and the understanding of another person (his daughter’s) inner subjective states: many years ago, my five- year- old daughter, attempting to imitate the gymnast nadia comaneci’s performance on the horizontal bar, tipped over the piano stool and painfully crushed two of her fingertips. how was i going to calm down this terrified child so i could safely drive her to the emergency room? inspiration struck: i held my own hand near her throbbing little hand and sternly ordered: “look, andrea! i’m going to teach you a secret! you can push the pain into my hand with your mind. go ahead, push! push!” she tried—and it worked! she’d “pushed the pain” love in the physical world into daddy’s hand. her relief (and fascination) were instantaneous. the effect lasted only for minutes, but with a few further administrations of impromptu hypnotic analgesia along the way, i got her to the emergency room, where they could give her the further treatment she needed. . . . i was exploiting her instincts—though the rationale didn’t occur to me until years later, when i was reflecting on it. in another passage in the same book, dennett seems to be more confident in first- person experiential states than in external, behavioral activity: when it comes to interpreting religious avowals of others, everybody is an outsider. why? because religious avowals concern matters that are beyond observation, beyond meaningful test, so the only thing anybody can go on is religious behavior, and more specifically, the behavior of professing. a child growing up in a culture is like an anthropologist, after all, sur- rounded by informants whose professing stand in need of interpretation. the fact that your informants are your father and mother, and speak in your mother tongue, does not give you anything more than a slight cir- cumstantial advantage over the adult anthropologist who has to rely on a string of bilingual interpreters to query the informants. (and think about your own case; weren’t you ever baffled or confused about just what you were supposed to believe?) in these two extracts it is hard to suppose that dennett denies the exis- tence of the self as more than a projection of the brain. let me underscore again the difficulty facing dennett’s eliminativ- ism. the problem with his effort to rid us of the mental is further revealed in how he recommends that we ignore the mental as an irreducible reality. in regard to an experiential state such as taste, he says: what i think you’ll find is that you can start elaborating a sort of catalogue of the facts that matter to you at this moment. maybe it’s the particular deliciousness of this taste in my mouth; so what is that deliciousness? well, i’d like some more, and i can recall it at a later date, and so on. we’re going to take care of all that. we’re going to include your disposition to t h e g o l d e n c o r d want some more, your capacity to recollect, and even the likelihood that you will find yourself pleasurably recollecting this experience of it. there’s a huge manifold of reactive dispositions that you’re pointing to when you’re saying, “this very yumminess right now,” and what you have to do is recognize that however indissolvable, however unassailable, however intrinsically present that all seems to you, what has to be explained is that it seems to you, not that it is so. the problem, though, was noted earlier: if something seems to you expe- rientially to be the case, then there is such a thing as seeming in experience. john searle highlights the problem facing those, such as dennett, who seem to dispense with conscious experience: you can’t disprove the existence of conscious experiences by proving that they are only an appearance disguising the underlying reality, because where consciousness is concerned the existence of the appearance is the reality. if it seems to me exactly as if i am having conscious experiences, then i am having conscious experiences. this is not an epistemic point. i might make various sorts of mistakes about my experiences, for example, if i suf- fered from phantom limb pains. but whether reliably reported or not, the experience of feeling the pain is identical with the pain in a way that the experience of seeing a sunset is not identical with a sunset. the stubbornness and foundational nature of the mental is partly revealed in churchland’s and stich’s very statement of their positions. when churchland writes that “we eventually decided that witches simply do not exist” and stich refers to early folk theories that we now discover are “screamingly false,” they both use mental and what they would call folk language: deciding and finding that beliefs are false presuppose mental acts and states. it is also difficult to believe that the “folk” ideas of the past, or the majority of them, were “utterly and thoroughly mistaken.” would the “folk” of the past have even survived if they had outrageously false be- liefs about their own thinking, needs, desires, and thoroughly false beliefs about the world, past, present, and future? if we had outrageously false beliefs about what is eatable, drinkable, and breathable, we might only love in the physical world live a day or two. i suggest churchland and stich have an inflated view of the errors of our ancestors. materialist faith consider, in closing, a contemporary materialist, thomas nagel who be- lieves that we will one day close the gap between the mental and physical: i believe that the explanatory gap in its present form cannot be closed— that so long as we work with our present mental and physical concepts no transparently necessary connection will ever be revealed, between physi- cally described brain processes and sensory experience, of the logical type familiar from the explanation of other natural processes by analysis into their physico- chemical constituents. we have good grounds for believing that the mental supervenes on the physical—i.e. that there is no mental difference without a physical difference. but pure, unexplained super- venience is not a solution but a sign that there is something fundamental we don’t know. we cannot regard pure supervenience as the end of the story because that would require the physical to necessitate the mental without there being any answer to the question [of ] how it does. but there must be a “how,” and our task is to understand it. an obviously systematic connection that remains unintelligible to us calls out for a theory. nagel does not, however, allow that dualism might provide such a theory—for example, a theory that posits an actual difference between the mental and physical that explains why they appear to be contingently related. he suggests instead that we will eventually come to reconceive the physical world and our mental life in a way that will permit us to recognize that our mental life is part of the physical world and, indeed, essentially so. “i believe,” writes nagel, “it is not irrational to hope that someday, long after we are all dead, people will be able to observe the operation of the brain and say, with true understanding, ‘that’s what the experience of tasting chocolate looks like from outside.’ ” according to nagel, we need a sufficiently expanded understanding of the composition t h e g o l d e n c o r d and nature of the physical world so that it can encompass the mental. he proposes that the ideal theory would show us that what we employ mental and physical concepts to refer to, turns out to be the same thing: what will be the point of view, so to speak, of such a theory? if we could arrive at it, it would render transparent the relation between mental and physical, not directly, but through the transparency of their common rela- tion to something that is not merely either of them. neither the mental nor the physical point of view will do because it simply leaves out the physiology, and has no room for it. the physical will not do because while it includes the behavioral and functional manifestations of the mental, this doesn’t, in view of the falsity of conceptual reductionism, enable it to reach to the mental concepts themselves. the right point of view would be one which, contrary to present conceptual possibilities, included both subjectivity and spatiotemporal structure from the outset, all its descrip- tions implying both these things at once, so that it would describe inner states and their functional relations to behavior and to one another from the phenomenological inside and the physiological outside simultane- ously—not in parallel. nagel’s case reveals the difficulty of identifying the mental and physical. we can hope to eventually have a conceptual revolution and perhaps see the mental and physical (as we now see them) as part of some newly con- ceived, physical thing. but so far, radical materialism seems deeply prob- lematic, and it is not clear, once we acknowledge conscious experience, that we can clearly identify it as a physical phenomenon. it is too soon to move from this case for beginning our philosophical work with the mental to making sense of the claim that gravity might be a manifestation of love. but i do suggest that eliminative approaches to the mental endanger less extravagant claims, such as: making love can be a manifestation of love. and i will go on to contend in future chapters that the recognition and appreciation of the nature of consciousness can form part of an initial clue, the beginning of a golden cord that can lead us to the divine. c h a p t e r selves and bodies bless to me my body . . . bless to me my soul —gaelic song and blessing as we have seen in the opening chapter, there is some discord in contem- porary philosophical work on consciousness and experience. it is not at all easy to eliminate consciousness from our inquiries nor, once admitted, is it easy to place it in a thoroughgoing physical world. david chalmers offers this succinct statement of the problem: “you can’t have your materi- alist cake and eat your consciousness too.” in the first chapter, i suggested that the reality of consciousness and experience is more evident than the posits of contemporary science. fortunately or unfortunately, the initial work to prepare for the main focus of this book is not over. a little more work is called for before we can establish a proper foothold to explore dante’s sense that the cosmos is upheld by love, or w. h. auden’s experi- ence of being caught up in the power of love, or the cambridge platonist notion of absolute life. t h e g o l d e n c o r d the chair of my philosophy department has a list that appears to be a credo taped to her office door. the list includes: naturalism is true. and: there are no spooks. naturalism is not easy to define. as barry stroud observed recently, “naturalism” seems to me in this and other respects rather like “world peace.” almost everyone swears allegiance to it, and is willing to march under its banner. but disputes still break out about what it is appropriate or acceptable to do in the name of that slogan. and like world peace, once you start specifying concretely exactly what it involves and how to achieve it, it becomes increasingly difficult to reach and to sustain a consistent and exclusive “naturalism.” as hinted at in the introduction, naturalism comes in many forms, and it may or may not take the form of radical materialism. however, the es- sence of naturalism is the denial that god exists—or even the denial of the possibility of god’s existence—and the denial that humans are imma- terial or have or contain or are nonphysical souls. to posit god or the soul is far from stroud’s “world peace”; rather, it is too spooky for naturalists. this chapter addresses such naturalist concerns about the soul or the self. is it plausible to think that some version of dualism has a competitive edge in theories of human nature? john searle, no dualist, comments that today materialism is so entrenched that it is like a religion—something searle sees as a demerit: “there is a sense in which materialism is the re- ligion of our time, at least among most of the professional experts in the fields of philosophy, psychology, cognitive science, and other disciplines that study the mind. like more traditional religions, it is accepted with- out question and it provides the framework within which other questions can be posed, addressed, and answered.” i have some evidence that my colleague’s credo may treat naturalism as a religion, because at the end of her list of propositions is the word “amen.” i suggest that we go directly to the mind- body relationship and con- sider why tout le monde thinks dualism is out of bounds. many philoso- phers today blame the french philosopher rené descartes for introducing a hideous bifurcation or dualism in which the person (soul or mind) is selves and bodies distinct from his or her body. when i was an undergraduate philosophy major, i was told that descartes was responsible for almost all contempo- rary philosophical problems; in my first class i was informed that even the vietnam war was somehow the fault of descartes! let’s look at some of the reasons why descartes is considered the prince of darkness and then see if a somewhat qualified dualism—which may be called integrative dualism—has promise. i will fill out “integra- tive dualism” shortly, but for now i will describe it as the view that the self and body are profoundly integrated but not identical. to summa- rize what is to follow: after sketching why so many philosophers reject dualism, i argue in this chapter that there is something that my friend and chair would find spooky or odd, given naturalism. prima facie, there seems to be more to a person than her or his body, and the relationship of person and body seems to be contingent rather than necessary. strict identity relations appear to be necessary (for example, water is h o) but the person- body relationship does not appear to be so. this nonnecessity or contingency does not sit well with standard forms of naturalism and materialism. in chapter , i will suggest that we step back to consider consciousness and personal identity in light of theism versus naturalism. ghosts in machines while descartes is considered the source of “dualism” in many textbooks, the idea that the self (or soul or mind or person) is not identical with his or her body is far older than the seventeenth century. plato and augustine argued against the materialism of their day and, as i hope to show below, some form of dualism seems to be a commonsense (or at least common- place and natural) position. one of the most famous attacks on descartes’ dualism in the twenti- eth century was gilbert ryle’s book the concept of mind. ryle sought to make dualism look like a massive, unnatural severing of the self and body. for him, accepting dualism requires being resigned to the notion that the person is like a ghost in a body that functions like a machine. ryle devel- oped the following portrait of dualism: t h e g o l d e n c o r d human bodies are in space and are subject to the mechanical laws which govern all other bodies in space. bodily processes and states can be in- spected by external observers. . . . but minds are not in space, nor are their operations subject to me- chanical laws. the workings of one mind are not witnessable by other observers; its career is private. only i can take direct cognizance of the states and processes of my own mind. a person therefore lives through two collateral histories, one consisting of what happens in and to his body, the other consisting of what happens in and to his mind. the first is public, the second is private. . . . it has been disputed whether a person does or can directly monitor all or only some of the episodes of his own private history; but, according to the official doctrine, of at least some of these episodes he has direct and unchallengeable cognizance. . . . he may have great or small uncertainties about concurrent and adjacent episodes in the physical world, but he can have none about at least part of what is momentarily occupying his mind. ryle further contends that this general, disjointed configuration (or really, disfiguration) of human nature is what descartes offered us in the seventeenth century. he elaborates on this model: material objects are situated in a common field, known as ‘space’, and what happens to one body in one part of space is mechanically connected with what happens to other bodies in other parts of space. but mental happenings occur in insulated fields, known as ‘minds’, and there is, apart maybe from telepathy no direct causal connection between what happens in one mind and what happens in another. only through the medium of the public physical world can the mind of one person make a difference to the mind of another. the mind is its own place and in his inner life each of us lives the life of a ghostly robinson crusoe. people can see, hear and jolt one another’s bodies, but they are irremediably blind and deaf to the workings of one another’s mind and inoperative upon them. . . . as thus represented, minds are not merely ghosts harnessed to ma- chines, they are themselves just spectral machines. though the human body is an engine, it is not quite an ordinary engine, since some of its selves and bodies workings are governed by another engine inside it—this interior governor- engine being one of a very special sort. it is invisible, inaudible and it has no size or weight. it cannot be taken to bits and the laws it obeys are not those known to ordinary engineers. nothing is known of how it governs the bodily engine. ryle’s critique is complemented by many other philosophers who contend that dualism provides us with an absurd portrait of the mind- body relationship. according to antony flew, dualists wind up treating the body as a container. and yet, argues flew, don’t we see other people in our normal interactions, not their containers? peter hacker and anthony kenny liken dualism to the thesis that a person is like a tiny invisible character operating somewhere in or around the brain. trenton merricks has a simple argument against dualism. he can kiss and has kissed his wife. merricks argues that if dualism is true, then he has only kissed her body. perhaps, if he is right and dualism is true, then souls cannot kiss or hold hands or go for walks, and so on. he appears to sup- pose that, for dualists, kissing involves a soul getting its body to make the appropriate move. and insofar as we all know that kissing is an intimate, proximate action, we all have grounds for rejecting dualism. the most important charge against dualism has been noted in chap- ter but not yet fully addressed. if dualism is true, then how does one account for the causal interaction of a nonphysical, nonspatial mind with a physical, spatial body? daniel dennett thinks that the problem of this mysterious interaction of mental and physical makes dualism antiscien- tific and unacceptable: “this fundamentally anti- scientific stance of dual- ism is, to my mind, its most disqualifying feature, and is the reason why in this book i adopt the apparently dogmatic rule that dualism is to be avoided at all costs. it is not that i think i can give a knock- down proof that dualism, in all its forms, is false or incoherent, but that, given the way dualism wallows in mystery, accepting dualism is giving up.” dennett appears to be claiming that dualism is out of bounds because it winds up positing a scientifically inscrutable causal relation. the causal link be- tween mental states and physical states seems to go beyond the kind of scientific inquiries one undertakes in physics, chemistry, and biology. t h e g o l d e n c o r d a conversation about dualism the contemporary conversation about dualism requires a few interrup- tions. the first is very modest. the word “dualism” is profoundly unhelp- ful in the current debate. it was coined first to describe the zoroastrianism belief that there are two chief cosmic forces—a good and an evil god. none of those canonical philosophers in the past who distinguished the soul (or mind or person) from the body employed “dualism” to describe their positions (plato, augustine, descartes, locke). i strongly suspect that this past usage, in which “dualism” names a duality of good and evil, still haunts us and explains why so many people think that if you are a dualist, then you value the mind and denigrate or treat the body as evil or bad. indeed, many theologians write as though dualism is the equiva- lent of patriarchy, anti- ecology, economism, and other similarly anti- body notions. but, as i shall note briefly, there is no reason whatever to link integrative dualism with this body hatred. second, and this may be one reason why philosophers plato, augus- tine, or descartes did not employ the term “dualism,” so- called dualists would be more accurately described as opponents of monism (one- ism; in this case they are opposed to thinking that the person is only her body) or proponents of pluralism (the idea that there is more than one kind of thing). dualists did not develop their position historically by first positing two kinds of things—the physical and the nonphysical—and then asking which kind of thing is the self or consciousness. rather, it was argued by descartes and plato and others that we have some knowledge of the self (or soul or mind), and when we consider whether the self is identical with the body, we have some reason to think that the answer is no. a person is more than her or his body, or at least the body as described by the materi- alist of the ancient and modern worlds. third, one needs to appreciate that while so- called dualists can recog- nize cases in which a person is like a ghost in a machine, they also recog- nize that in the case of healthy, integrated embodiment, a person functions as a unity. unless i am paralyzed or i have lost motor and cognitive con- trol over my body, then to see me in action is to see me. but, severe brain damage may leave me utterly paralyzed and with the feeling that my body selves and bodies is a mere container. and perhaps severe psychological disintegration could leave me in the position described by ryle. consider the following: imagine that i harbor, but never express, deeply vile emotions. never. in that case, everyone might think me cheer- ful, but this is indeed only a “public affair” and not something i ever ex- press with angry words or gestures. my malice and its history would, then, be private episodes or a matter of mental operations. i may be so severed from my physical, public persona that my malice is given no visibility (ges- tures), audition (angry words), and, in a sense, no size or weight. i would actually be in the bifurcated state that ryle caricatures. we can easily make sense of such a breakdown in terms of merrick’s example. you believe, for example, that you are kissing the love of your life when in actuality you are kissing someone who is only interested in your disposable income. integrating person and body let’s now consider integrative dualism. some dualists do (alas) foster a somewhat bifurcated mind- body relationship. presumably you do not harbor vile emotions that are never expressed. hopefully, the person you are romantically involved with actually cares about you, and vice versa, so that when you kiss, you offer tactile signs of the reality of embodied love. those whom i am calling integrative dualists deny that there is a strict identity of person and body (as in: water is h o), but at the same time they affirm the profound interwoven unity that constitutes an embodied person when such embodiment is, indeed, healthy and functional. so, the first point is that integrated dualism does not lead to the absurdities of ryle’s caricature. under absurd or tragic conditions, his de- scription may match reality, but under healthy, normal conditions ryle’s ghost story is wide of the mark. i suggest that it is dennett who has turned the self into a ghost, for it is no more real (on his account) than the idea of a center of gravity, a useful reference point but an abstraction and not itself a substantial individual. the integrative dualist account of persons sees us as fully embodied. on this view, the account is not at all like richard taylor’s illustration in t h e g o l d e n c o r d his book metaphysics, in which a duck (representing a human) is pictured with a sketchy duck floating above it. perhaps the integrative and ma- terialist position should be pictured as an ambiguous unity, the way the famous duck- rabbit figure is represented. this is a figure that may appear as a duck or a rabbit depending on the angle from which it is viewed. as other philosophers have remarked, if faced with something that could be either a duck or rabbit, run toward it and, if it flies away, conclude that it is a duck, whereas if it hops away, chances are that it is a rabbit. i suggest a similar point with integrative dualism, where one sees a healthy human person as a functional unity. the additional claim is that if you reflect fur- ther, philosophically, you can find reasons for a nonidentity between the mental and physical, and thus reasons for adopting integrative dualism rather than physicalism. and now what of the problem of causal interaction? i suggest that this is not a problem, or no less of a mystery, given integrative dualism than it is for any plausible account of materialism. consider four points. first, integrative dualists may see the self as spatial, not only in the sense that in a healthy embodiment, persons embody and express their authen- tic selves, but also in the sense that selves are spatially extended. i feel myself as spread out in space. in a healthy embodiment, my phenomenal (felt) body is coincident with my physical body. this can be ruptured in trauma—i might lose an arm and yet have a phantom limb; an experience of my limb as still intact. if this view is correct, then mind- body interac- tion is not a case of the nonspatial interacting with what is spatial. second, contra dennett and churchland, appealing to the law of the conservation of energy causes no greater problem for dualists than it does for materialists. the law of the conservation of energy states that the amount of energy in a closed system must remain constant. it does not specify what kind of energy is involved, nor does the law govern how energy is distributed. as david rosenthal writes, “the dualist need not adopt the unintuitive idea that mental events never cause bodily events. conservation of energy dictates only that the energy in a closed physi- cal system is constant, not also how that energy is distributed within the system. since mental events could effect bodily changes by altering that distribution of energy, the conservation principle does not preclude selves and bodies minds’ having bodily effects.” moreover, if a philosopher assumes from the outset that all causation can only be physical causation, then the phi- losopher is simply begging the question against the advocate of integra- tive dualism. further, so long as materialists allow that persons think and reason, they have to allow that such causation does not violate the conservation law. yet, thinking and reasoning are mental operations. in the activity of reasoning, we come to accept conclusions on the basis of the logical and evident links between beliefs. so, when contemplating which number is the smallest perfect number (a number that is equal to the sum of its divi- sors, including , but not including itself ), one reaches the conclusion “ ” by reasoning that is equal to + + ; there is no lower number that fulfills the condition of being a perfect number. if materialists think that human bodies can reason, then what is the problem with integrative dual- ists who claim that such reasoning involves selves who are embodied and yet are more than the chemical- physical processes involved? the material- ist will maintain that they do not have an interaction between the physi- cal and nonphysical (for them, thinking is a brain activity), but they still need to preserve thinking as a mental operation involving reason. and if they allow that that operation doesn’t violate energy conservation, then why would a dualist account of mental activity violate it? if a naturalist goes so far as to deny mental causation in the form of reasoning (where a person’s thinking of x supports or gives evidence for her to think y is true), then such a naturalism undermines reasoning itself, including the kind of reasoning that supports naturalism. third, almost all forms of materialism allow that at a fundamental level there are brute, not further explainable, causal powers. we can ex- plain the property of macroscopic objects and processes in terms of mi- croprocesses, but can this explanation continue without end? many think that you must get to objects or particles with basic properties to avoid an infinite regress. an infinite regress of explanations would leave us without an account of why there is any causation at all. thus, if you can have physical objects with basic powers, why not nonphysical beings? den- nett’s complaint that dualism leads to mystery and is thus antiscientific rests on a false premise: positing basic, not further explainable, causal t h e g o l d e n c o r d powers is not necessarily antiscientific, nor is it antiscientific if we recog- nize irreducible kinds of things. fourth, churchland and others fail to appreciate the way in which dualists—in particular, integrative dualists—can recognize the profound interrelationship of the mental and the physical. in matter and conscious- ness, churchland writes: if there really is a distinct entity in which reasoning, emotion, and con- sciousness take place, and if that entity is dependent on the brain for nothing more than sensory experiences as input and volitional execu- tions as output, then one would expect reason, emotion, and consciousness to be relatively invulnerable to direct control or pathology by manipulation or damage to the brain. but in fact the exact opposite is true. alcohol, nar- cotics, or senile degeneration of nerve tissue will impair, cripple, or even destroy one’s capacity for rational thought. psychiatry knows of hundreds of emotion- controlling chemicals (lithium, chloropromazine, amphet- amine, cocaine, and so on) that do their work when vectored into the brain. and the vulnerability of consciousness to anesthetics, to caffeine, and to something as simple as a sharp blow to the head shows its very close dependence on neural activity in the brain. all of this makes perfect sense if reason, emotion, and consciousness are activities of the brain itself. but it makes very little sense if they are activities of something else entirely [emphasis mine]. i find churchland’s point unconvincing. no contemporary dualists deny tight interconnections between the mental and the physical. to portray dualists as holding the mind or person as “something else entirely” from the body explicitly denies the dualist thesis that human persons are indeed embodied. the idea that a dualist would deny the fact that alcohol affects the mind recalls a lecture i once heard at new york university in which a philosopher claimed that students can disprove dualism by drinking excessive amounts of alcohol and then observing the results. in reply to churchland, i suggest that we can only make sense of the dual nature of alcohol consumption, both its physical and mental components—from a moderate glass of wine over discussions of dante to the unhealthy craving selves and bodies that causes brain and liver damage and loss of consciousness—if we be- lieve that more is involved than physical- chemical processes. churchland’s point can also be reversed: the fact that reason, emotion, and conscious- ness impact our physiology and behavior makes little sense if all we have doing the causal work is brain activity. further points can be made in reply to the interaction problem. for example, objecting to integrative dualism by an appeal to the prin- ciple of the conservation of energy is embarrassed by the fact that the principle does not apply to all physical interactions, as seen in general relativity theory. as the physicist robert wald observes, “in general relativity there exists no meaningful expression for gravitational stress- energy and thus there is no meaningful local energy conservation law which leads to a statement of energy conservation.” the contemporary view of the physical is, arguably, too fluid now for materialists to confi- dently think that they can (as dennett does) rule out dualist interaction in principle. having canvassed reasons for rejecting integrative dualism and found them wanting, why adopt integrative dualism? some positive reasons for integrated dualism there are many reasons for not being swayed by contemporary forms of materialistic naturalism and opting instead for integrative dualism. but first, a little background: if a person is her body, then anything true of the person must be true of her body. this is a feature of what philosophers call the indiscernability of identicals, as noted in chapter . consider again any two pairings in which two names are used to refer to the same thing: morning star and evening star, mark twain and samuel clemens, cas- sius clay and muhammad ali, and so on. assuming that each of these re- fers, strictly speaking, to the same thing, then anything that is true of one is true of the other. to box with muhammad ali is to box with cassius clay. given this principle, it appears that some things are true of persons, but not true of their bodies, and thus there is a reason for holding that persons are not their bodies. consider just three areas. t h e g o l d e n c o r d disembodiment and bodies without selves if the self is her or his body, then the self cannot exist without her or his body, and vice versa. take, however, the possibility of disembodiment. w. d. hart offers this thought experiment: imagine that, still embodied, you wake up tomorrow in your bed. before raising your eyelids, you stumble over to a mirror in your room. pointing your face at the mirror, you now raise your eyelids. what you see in the mirror is that your eye sockets are empty. . . . curious. so you probe the empty sockets with your little finger. you can imagine how they would feel, and how the empty channel where the optic nerve once lay would feel. interesting. so you saw off the top of your skull with your surgical saw and, lo and behold, your skull is empty. . . . you’ve imagined what seems to be seeing without the two bodily or- gans, eyes and a brain, [that] most people think are essential to seeing. you don’t need your legs to see, so imagine them away. you don’t need your arms to see, so imagine them away. you don’t need your trunk to see, so imagine it away. you don’t need the rest of your head to see, so imagine it away. now your whole body is gone, but you are still there seeing what is reflected in the mirror. of course that is no longer your face or any of your body; it is probably just the wall behind you. richard swinburne, too, envisions what it might be like to become dis- embodied. if a person can exist without his body, even if it never happens, then a body cannot exist in a disembodied state: imagine yourself . . . gradually ceasing to be affected by alcohol or drugs, your thinking being too equally coherent however men mess about with your brain. imagine too that you cease to feel any pains, aches, and thrills, although you remain aware of what is going on in what has been called your body. you gradually find yourself aware of what is going on in bodies other than your own and other material objects at any place in space—at any rate to the extent of being able to give invariably true answers to questions about these things, an ability which proves unaffected by men selves and bodies interfering with lines of communication, e.g., turning off lights so that agents which rely on sight cannot see, shutting things in rooms so that agents which rely on hands to feel things cannot do so. you also come to see things from any point of view which you choose, possibly simultane- ously, possibly not. you remain able to talk and wave your hands about, but find yourself able to move anything which you choose, including the hands of other people. here, swinburne is seeking to fill out an experiential picture of divine powers. he is imaginatively sketching what it would be like to have causal properties extend beyond one’s body. in fact, there is an impressive collection of literature in which per- sons report out- of- body experiences (obes) when they are near death or have even been pronounced dead prior to resuscitation. let’s assume that all such experiences are not accurate accounts of persons actually leaving their bodies. but even granting that the experiences are false or unreliable, don’t they at least appear to describe a coherent, bona fide possibility? if we have reason to think that a person can (even if she never does) survive the annihilation of her body, then there is something true of her, but not true of her body. some of the criticism of swinburne’s thought experiment are not, in my view, compelling. peter van inwagen objects: i can’t imagine any of this. i can’t even imagine myself ceasing to be af- fected by alcohol, in any sense that will help swinburne. i can, of course, imagine my never drinking any alcohol and thus “ceasing to be affected” by it; but clearly that isn’t what swinburne has in mind. or i can (perhaps) imagine myself drinking alcohol that is removed from my system by mar- tians before it reaches my brain; but this gets us no forwarder. . . . can i imagine alcohol having its usual effects on my brain but no effect on my sobriety? i can’t, and i am sure that anyone who thinks he can “imagine” these things has just not thought the matter through. but contemporary neurology and philosophy have not yet shown there to be a necessary connection between brain states and mental states. we do t h e g o l d e n c o r d not yet have an account of why certain brain states produce certain men- tal states. by way of a further reply to van inwagen, it seems that we can imagine the body as it is and yet the person has ceased to be. consider the case in which a person falls into a deep coma. she as a person has ceased to be, despite the fact that the bodily organs continue to function. van inwagen has also objected to arguments involving thought ex- periments on the grounds of a general skepticism about the imagination. our imagination can deceive us. perhaps i only appear to be able to be disembodied, but this is not a bona fide possibility. in reply, i suggest that we should be careful in appealing to the imagination as an infallible guide to recognizing what is and is not possible. someone might imagine in vivid terms time travel (for example, back to the future), and yet it is impossible. (perhaps time is necessarily one- directional.) still, if you care- fully consider some state of affairs and you can envision or describe it as actual, and it does not conflict with anything you know to be necessary, then you have reason to believe that it is possible. i suggest that we can envisage disembodiment (and other states of affairs to be noted); it does not conflict with any independently known, necessary truths, and thus it is reasonable to believe it to be possible. one more point about disembodiment: i should add that swinburne’s and hart’s thought experiments may describe what it might be like to sur- vive the death of one’s body, but they are not ipso facto descriptions of something we may readily see as good. that is, while it may be good to die to be with “the lord” (more on this later), the loss of one’s body can be seen by integrative dualists as a deep injury or profound severance. hart’s story, for example, may well strike us as horrifying. perhaps this horror is fitting; perhaps we should find disembodiment chilling. the coherence of such an event should cause us dismay. integrative dualism is well posi- tioned to see embodiment as good and its loss as bad. consider a different case in which something is true of a person but not true of her body. body- switching if you are indeed your body, then you could not switch bodies or have yours replaced and remain the same. however, we seem to be able to grasp selves and bodies what it would be like to have a different body, different gender, and so on. millions (perhaps just under . billion) of hindus and buddhists believe in reincarnation, in which a soul comes to have a new body; it may be hard to prove that reincarnation occurs but more difficult to know that rein- carnation is impossible. arguably, imagining that one might switch bodies with persons seems in part to be what we picture when we truly empathize with another person or carry out the golden rule. a person might be perfectly reasonable in asking you whether your views on famine relief, abortion, and so on would change if you had been born in poverty or had lived a very different sort of life or were of a different gender or ethnicity. some objections to the possibility of body- switching actually seem to underestimate our moral imagination. consider this example from ber- nard williams: suppose a magician is hired to perform the old trick of making the emperor and the peasant become each other. he gets the emperor and the peasant in one room, with the emperor on his throne and the peasant in the cor- ner, and then casts the spell. what will count as success? clearly . . . the emperor’s body, with the peasant’s personality, should be on the throne, and the peasant’s body with the emperor’s personality, in the corner. what does this mean? in particular, what has happened to the voices? the voice presumably ought to count as a bodily function; yet how would the peas- ant’s gruff blasphemies be uttered in the emperor’s cultivated tones, or the emperor’s witticisms in the peasant’s growl? a similar point holds for the features; the emperor’s body might include the sort of face that just could not express the peasant’s morose suspiciousness, the peasant’s face a face no expression of which could be taken for one of fastidious arrogance. these “could”s are not just empirical—such expressions on these features might be unthinkable. but doesn’t this objection overlook the fact that class distinctions are not necessary? when the emperor realizes that, after all, he could have been a peasant and the peasant realizes that he might have been an emperor, the first step is taken toward the possibility of change. are we really to be- lieve that a peasant is necessarily given over to gruff blasphemies and the t h e g o l d e n c o r d emperor is essentially witty and cultivated? these sorts of conditions seem contingent, not essential. if so, we have a further reason for not identify- ing the person and the body. williams and others may object that if the person can be detached or severed and switch bodies, then we run the risk of undermining the real foundation for personal identity over time: bodily continuity. the prob- lem with insisting on bodily continuity, however, is that it does not seem to be essential (as observed in the next argument). but more important, bodily continuity is deemed vital because of psychological or personal continuity. novels like such as woolf ’s to the lighthouse demonstrate how personal identity may be compellingly portrayed by following the different streams of consciousness of the characters. woolf is brilliant at moving the readers from person to person as she shifts the mood and per- spectives in the thoroughly psychological landscape. the physical world is not at all ignored (there is the house, the lighthouse, and so on) but, rather, bathed in psychological designs, projects, conflicts, anticipation, and other emotions. personal identity over time this argument is related to the previous one but is slightly different. we have evidence that every seven years your body is almost completely re- placed by new cells. your body is not the same as the one you had in, say, kindergarten, but, at least in accord with common sense, you are the same person. if so, we have reason to think that you are not identical with your body. in a thought experiment, we can imagine that over time every part is replaced, and thus at the end of this gradual replacement (say, after ten years) it is not the same body you had before. nonetheless we can imagine that you remain the same person. loving selves and bodies let me bring this back to the topic of love. what is it to love another per- son? i suggest that it is to desire and take pleasure in her flourishing. this selves and bodies is something i return to in chapter , but it is fitting to sketch the follow- ing line of reasoning here. sadly, it appears that our bodies have a natural terminus, a point at which they wear out. but do we think that there is a natural time when a person has a terminus or ending? insofar as we iden- tify the person with her body, it might be reasonable to think so. and yet at the death of someone (no matter how old) whom you love deeply, it is difficult to believe that the value or worth of a person has been exhausted or has reached a natural ending. our concept of being a person at least ap- pears to be that of a man or woman who is capable of unending growth, love, learning, and relationships. if this line of reasoning has any purchase with you, then you have some basis for thinking that the concept of the good of a person transcends or goes beyond the good of her body. while this line of reasoning recognizes a goodness about persons (their inex- haustible value) not possessed by bodies, this implies no denigration of the body. in a healthy state, to love a person will be embodied insofar as one cares for the whole of a person. and yet we can appreciate this, while also appreciating that there is a good to persons who can, if there is a god who preserves us in being, outlast the good of the body. i suggest that further reflection on what it is to love provides a bit more evidence for the intuitive plausibility of integrative dualism. for those naturalists who acknowledge that there is conscious experience and so on, human persons are identical with their bodies. you are the same thing as your body now. on this view, however, you as a person are a mode or way that your body is rather than a substantial individual. arguably, your body existed before you did as a conscious being (in your first days as a fetus), and your body will probably survive (as a corpse) after you, the person, dies. in this sense, then, you as a person are a phase or period that your body undergoes. phases or modes can be of different degrees of value and lengths (say, being a boy or girl versus the phase of manhood or womanhood). but when it comes to persons, don’t we experience our- selves as substantial individuals who can love and are loved as individuals? in loving my wife, for example, am i loving a phase or period that her animal body is passing through? i don’t think so! romantic love and the experience of someone’s death mark occasions when we are vividly aware of the substantial individual identity of persons. t h e g o l d e n c o r d when i was present at a dear one’s death, i experienced the loss of the person as an individual. the body was still in the room; the breathing had stopped. if some forms of materialism are true (you are your body), then the person stage has elapsed but you might still be there (if the body remains intact), but this seems quite contrary to our ordinary experience and beliefs. søren kierkegaard seemed to deeply appreciate how love manages to focus and hold on to the beloved in a way that is everlasting and enduring. in works of love, he points out: the beloved can treat you in such a way that he is lost to you, and you can lose a friend, but whatever a neighbour does to you, you can never lose him. to be sure, you can also continue to love your beloved and your friend no matter how they treat you, but you cannot truthfully con- tinue to call them beloved and friend when they, sorry to say, have really changed. no change, however, can take your neighbour from you, for it is not your neighbour who holds you fast—it is your love which holds your neighbour fast. in loving another person deeply, we may become ever more appreciative of his or her precious, irreplaceable individuality. insofar as this is an au- thentic grasp of who the beloved is, we have reason to doubt that a person is a mode or phase of something else, such as her animal body. ghosts in machines revisited before examining theism and naturalism further as “big pictures” or com- prehensive philosophies, let’s reconsider ryle’s project. in the lengthy pas- sage cited earlier and throughout his book the concept of mind, ryle implies that the dualist invents a kind of shadow world, a realm that is cut off from the main evident realm of spatial objects and public causal interactions. i want to stress a slightly different point: people vary in their values, interests, and passions so significantly that they may be said to be in different worlds. it is commonplace to distinguish different worlds selves and bodies from a social point of view: there are the worlds of sports, art, fashion, and so on. in a sense, how you conceive and value yourself and those around you can give rise to very different worlds. for hemingway, for example, the world he sees may allow for love, but it is dominated by chance, ri- valry, drinking, sex, grim and seemingly purposeless conflict, brief and sometimes brilliant alliances, and death (in a farewell to arms, frederic henry and catherine barkley love each other, but their affair is cut short). the cambridge platonists deeply appreciated how our inner mental virtues or vices can give rise to very different worlds or places. benjamin whichcote advanced this thesis in an aphorism: “heaven is first a temper, then a place.” if you approach the world with the love of the good and the true and the beautiful, whichcote proposed, then you bring heaven, or you begin to bring a little heaven into being. this concept of how the inner can shape the outer, public world was later given expression in john milton’s paradise lost, when he records satan’s boast: “the mind is its own place, and in itself / can make a heav’n of hell, a hell of heav’n.” in closing, then, i suggest that there is some value in seeing the world and life itself as a mix of the inner and outer, the mental and the physical. the key point of integrative dualism is that we can avoid seeing the person in thoroughly ethereal, spectral terms (as a spook), and we can also realize that the observable world is an arena in which we can experience and act on our inner thoughts and desires. c h a p t e r some big pictures one need only shut oneself in a closet and begin to think of the fact of one’s being there, of one’s queer bodily shape in the darkness . . . of one’s fantastic character and all, to have the wonder steal over the detail as much as over the general fact of being, and to see that it is only familiarity that blunts it. —william james at the beginning of this book i introduced a school of philosophers, the cambridge platonists, who in the seventeenth century advanced the christian faith with a supreme focus on the good, the true, and the beau- tiful. for them, an experiential grasp of divine love animates and expands one’s love of nature. in a discourse of the freedom of the will, peter sterry writes: “if god is love, his work is the work of love, of a love unmixed, unconfined, supreme, infinite in wisdom and power, not limited in its workings by any preexistent matter, but bringing forth freely and entirely from itself its whole work both matter and form, according to its own t h e g o l d e n c o r d inclination and complacency in itself.” sterry and the other cambridge platonists defended this vision of temporal and eternal love—they would have agreed with dante that gravity and all celestial and terrestrial reality is the result of god’s creative love—over against the daniel dennett of their day, thomas hobbes. as noted in the last chapter, this rich, expan- sive portrait of love does not, however, meet with enthusiasm among a host of naturalists. from the standpoint of secular naturalism, the pla- tonic christian view of god and the good should be disparaged as mere fable and superstition because of its lack of scientific credibility. without taking on the big pictures of naturalism, i find that the debate over reli- gious experience is seriously curtailed. i vividly saw the need to look at background assumptions in an ex- change i had with coauthor stewart goetz and naturalist matthew bagger at an american academy of religion meeting. bagger was assigned the task of critiquing naturalism, a book written by goetz and me that is highly critical of naturalism and raises some objections to bagger’s own work. there was an extraordinary, bizarre book launch at a san diego cocktail lounge complete with bouncers and blaring disco music; and pages of our book (along with a few other books that were part of the launch) were projected on a screen above the bar, where the bartender was mixing drinks with hard liquor. as muddled as that evening turned out to be, it became evident in our exchange with bagger that only a critical challenge to naturalism could open the door to the possibility of theistic religious experience. without considering which of these big pictures of reality may be true, the credibility or incredibility of religious experience cannot be productively examined. bagger maintained—as he puts it in his religious experience, justification, and history—that it is now unacceptable to appeal to “a transcendent order of reality (and causa- tion) distinct from the mundane order presupposed alike by the natural scientist and the rest of us in our quotidian affairs.” while goetz and i, like the cambridge platonists, think that a transcendent order may in fact be experienced under ordinary and extraordinary conditions, bagger’s position is nonetheless consistent and lucid: “our naturalism constitutes grounds for rejecting epistemological theories which permit supernatural explanation.” some big pictures in this chapter, let us consider, under less intoxicating and noisy conditions, the naturalist critique and whether it utterly undermines the idea that the loves and goods of this world can be hints of an eternal god. the incoherence of theism some naturalists charge that theism is utterly incoherent: it makes no sense or, putting the matter succinctly, it is nonsense. for many de- cades the canadian philosopher kai nielsen has argued that theism is incoherent. we are no better off with the stars in the heavens spelling out god exists than with their spelling out procrastination drinks melancholy. we know that something has shaken our world, but we know not what; we know—or think that we know, how could we tell which it was in such a circumstance? —that we heard a voice coming out of the sky and we know—or again think that we know—that the stars rearranged them- selves right before our eyes and on several occasions to spell out that god exists. but are we wiser by observing this about what “god” refers to or what a pure disembodied spirit transcendent to the universe is or could be? at most we might think that maybe those religious people have something—something we know not what—going for them. but we also might think it was some kind of big trick or some mass delusion. the point is that we wouldn’t know what to think. for nielsen, theism as a hypothesis is like chomsky’s famous case of non- sense that philosophers like to quote (as noted in chapter ), “colorless green ideas sleep furiously.” theism posits a being who exists beyond the universe. in nielsen’s views, this is positing a being beyond sense or be- yond what can be meaningfully referenced. in christianity and paradox, ronald hepburn claims that theism faces a deep, logical problem. it is impossible, in his view, to think or describe a being that is beyond or outside the cosmos: t h e g o l d e n c o r d why not imagine a being entirely outside the universe, infusing energy into the universe, without becoming in any way part of it? why is this absurd? it is absurd because in imagining this, we inevitably picture the world as a limited system with a boundary beyond which dwells the god who is the world’s cause. but this would really be no different from think- ing of a part of the world and of a being who dwells in another part but is in contact with the first. if hepburn is right, it makes no sense for there to be an extra- universe or cosmic creator. and gareth moore similarly lampoons the idea of god as an invisible spirit: we say that god is invisible, intangible etc. these traditional attributes of god have their part to play in theology and in the spiritual life of chris- tians. treating the existence of god as a hypothesis makes them look like makeshifts for the purpose of preserving the hypothesis from falsification, as if they said, “god is there all right, as the evidence indicates, but the rea- son you can’t discover him is that he is invisible, etc., and not accessible to your sense or detectable by your instruments.” but that cast- iron defense of the “hypothesis” only serves to make it idle, a kind of joke, like saying, “there is a green, three- legged, ten- foot- tall woman in the middle of the road, only you can’t detect her because she is invisible, intangible, etc.” and one would still be left with the problem [of ] why any phenomena could be understood as evidence for this hypothesis. moore instead thinks that religious beliefs should not be treated as claims about a reality that we can test and debate intelligently. although not moore’s analogy, the belief that there is an invisible, intangible, odorless, undetectable cat in a room would not be dislodged if one claimed that no such cat is seen, touched, smelled, or detected. a believer in such a cat might reply to a skeptic: “of course you cannot see it. the cat is invisible. if you could see the cat, it wouldn’t be invisible.” but then one would need to know why anyone would believe in such a cat in the first place. theism is in a similar fix, according to moore. some big pictures jan narveson, like moore and nielsen, argues that theism as a hy- pothesis is an impoverished worldview, for it lacks any explanatory power. narveson proposes that contemporary theists are not better off than those holding to an anthropomorphic mythology: it ought to be regarded as a major embarrassment to natural theology that the very idea of something like a universe’s being “created” by some minded being is sufficiently mind- boggling that any attempt to provide a detailed account of how it might be done is bound to look silly, or mythical, or a vaguely anthropomorphized version of some familiar physi- cal process. creation stories abound in human societies, as we know. ac- counts ascribe the creation to various mythical beings, chief gods among a sizeable polytheistic committee, giant tortoises, super- mom hens, and, one is tempted to say, god- knows- what. the judeo- christian account does no better, and perhaps does a bit worse, in proposing a “six- day” process of creation. narveson further holds that theism is defective because it is unable to explain how it is that divine agency functions: it is plainly no surprise that details about just how all this was supposed to have happened [god creating the cosmos] are totally lacking when they are not, as i say, silly or simply poetic. for the fundamental idea is that some infinitely powerful mind simply willed it to be thus, and as they say, lo!, it was so! if we aren’t ready to accept that as an explanatory description—as we should not be, since it plainly doesn’t explain any- thing, as distinct from merely asserting that it was in fact done—then where do we go from there? . . . “how are we supposed to know the ways of the infinite and almighty god?” it is asked—as if that put- down made a decent substitute for an answer. but of course it doesn’t. if we are serious about “natural theology,” then we ought to be ready to supply content in our explication of theological hypotheses. . . . an explanation’s right to be called “scientific” is, indeed, in considerable part earned precisely by its ability to provide such detail. t h e g o l d e n c o r d narveson concludes that theism is to be rejected due to its profoundly unscientific or antiscientific philosophy. these sorts of arguments appeal to what might be called the big picture. in narveson’s view, explanations in terms of dualism or theism appear lame compared to scientific materialism. brian o’shaughnessy comments on the comparative strength of an appeal to scientific causes versus the appeal to divine agency: “four centuries of triumphant advance by the rock- bottom physical science of physics cannot but leave some mark on philosophy. when you can predict the wave length of a spec- trum line to eight decimal places it is rather more difficult to believe that the underlying reality of everything is spiritual, e.g., an immaterial deity. after all, should a deity be so fastidious?” objections were raised against some forms of materialism in chapters and , but some philosophers hold that even if materialistic naturalism has some trouble accounting for consciousness and selves, this would not be a sufficient reason to abandon materialistic naturalism. as leopold studenberg observes, “materialistic science stands unrivaled. the belief that consciousness will force this giant onto its knees may even seem slightly mad.” colin mcginn similarly notes that naturalism is currently judged to have far greater support than theism. from the point of view of naturalism, a theistic account of consciousness looks like a miracle or a parlor trick, and, faced with such an option, we should always opt for naturalism: “one wants to insist consciousness cannot really be miracu- lous, some kind of divine parlor trick. it must fit into the natural order of things somehow. its relation to matter must be intelligible, principled, law- governed. naturalism about consciousness is not merely an option. it is a condition of understanding. it is a condition of existing.” some naturalists, such as david hume, make a further point. the existence of the observed spatiotemporal universe is unique. we can make sense of a host of galaxies, but, according to some naturalists, not a host of universes. in our unique universe, we are simply unable to reason about whether there is a creative designing intelligence “behind” it or at its ori- gin, assuming that it has an origin. if universes were plentiful and we had a way of telling which ones were created, fine; but they aren’t, so we cannot compare and contrast universes in the way that we might compare some big pictures and contrast islands and then question whether they have been created or are inhabited. richard dawkins claims to be virtually certain that there is no god, and it is worth finishing up this sample of naturalist critiques by consid- ering his argument. his overall thesis is advanced as a scientific precept: the complexity of a being (reality or event) is explained in terms of the simple—simpler beings or events. so, in accounting for glaciers, forests, human beings, frogs, planets, the explanation is to be carried out by an appeal to simpler and simpler forces. as a thesis within biology or physics, this seems reasonable. dawkins then argues that god, if there is a god, must be highly complex—indeed, no less complex than the cosmos that, according to theists, god creates and sustains: “a god capable of continu- ously monitoring and controlling the individual status of every particle in the universe cannot be simple.” then god, as a being, must be explained by something simpler. but unless one posits simpler gods from whom god evolved (and this would be preposterous), theism should be rejected. the incoherence of the incoherence the above barrage of objections is forceful, but we are compelled to step back and survey theism on its own terms. unless we assume from the beginning that naturalism is the only alternative, we need to consider the decisive dividing point between theism and naturalism. theism contends that the most fundamental reality in the cosmos is an all- good, necessarily existing, intentional reality. according to theism, the cosmos is sustained by a teleological, purposive being that is noncontingent: that is, god does not exist accidentally or due to the causal force of some other being. as such, theism is actually a surprisingly simple hypothesis insofar as god is simple (not made up of parts) and intentional or purposive. that god ex- ists necessarily is not in itself an arbitrary designation. existing necessarily or a se is part of the very meaning of god. to claim that god is contingent or that god popped into existence one day is akin to claiming that there is a square circle. intentional explanations are among the most basic kinds that we employ. t h e g o l d e n c o r d keith ward rightly points out that christian theism treats mental causation as basic. he explicitly connects the recognition of conscious- ness in human beings with the concept of god as an ultimate intentional reality: i propose that consciousness, though in the human case it is a factor that emerges from the physical development of the brain, is an irreducible fact, like energy or matter. a conscious state . . . has its own proper reality, and no account of reality that ignores it can be complete. if that is so, the ultimate constituents of the universe, out of which the whole complex universe is made, cannot just be lumps of matter or fields of force. they must include conscious states. though animal con- scious states—including the human—emerge from complex brains, they are truly emergent, new sorts of reality, and they stand in need of an ex- planation that cannot be reduced to physical terms alone. however conscious states come about, once they exist they require not just scientific explanation, but personal explanation. the god hy- pothesis, at its simplest, is the hypothesis that personal explanation is not reducible to scientific explanation, and that it is prior to scientific explana- tion. . . . [it] proposes that there is a consciousness that does not depend on any material brain, or on any material thing at all. for most theists, then, god is a necessarily existing being whose inten- tional purposive power is foundational to all reality. timothy o’connor articulates the theistic claim about god’s power: a personal necessary being’s activity in generating a contingent order is to be thought of, in the first instance, as the direct causing of an internal state(s) of intention that a particular determinate state of affairs obtain. this is not, importantly, to be treated as an elliptical expression for there being some prior state of the agent that brings about, in mechanistic fash- ion, the agent’s coming to have the intention. rather, the intention is irreducibly a product of the agent qua agent. this implies as a corollary that the causal power that is manifested in such a case is of a different sort from the mechanistic variety describable by mathematical functions from some big pictures circumstances to effects (or from circumstances to ranges of effects, in cases of probabilistic, rather than deterministic, causation). let us begin by considering narveson’s line of reasoning. narveson wants theists to have detailed accounts of how divine purpose or god’s will accounts for things. his demands, however, seem to be at odds with our recognition of the concept of basic action. if there are genuine inten- tional explanations of events, then there must be what some philosophers call basic action. these are acts that one does for reasons, but one does them directly and without the mediation of other acts. you might do one thing (say, get your friend’s attention) by doing another (calling out to her), but some acts are not mediated. your calling out to your friend may require a host of factors to come into play in a full explanation (social expectations, language use, personality type, texting). but some acts will be not further accountable by other acts. when you called, you did not do so by willing that certain neurons fire or that your nervous system react in some way; you simply acted. when narveson complains that theistic explanation lacks certain mechanisms and causal elements, his complaint cuts against intentional explanations in ordinary human (and other animal) activities. in every- day, bona fide explanations of human agency, there are basic acts that are not further reducible into “impressive detail.” (it should also be noted that if there must always be an answer to “how things work” in physical causation, then there can be no basic physical causes. this seems counter to many views of causation in the physical world and threatens an infinite regress, as mentioned earlier.) if divine intentions are basic, then so are some human intentions even though the latter are exercised by beings with animal bodies. this implies that narveson is not successful in ruling out the possibility of theistic accounts. let me linger on this point. imagine that narveson takes dennett’s strategy and insists that any mental explanations ultimately have to give way to explanations that involve only clearly nonmental causes. this would, however, have the impact of undermining our reasoning. as pointed out in chapter , if reasoning takes place, then the embracing of conclusions takes place by virtue of grasping certain reasons. but in nonmental causation there is no t h e g o l d e n c o r d reasoning because there are no beliefs, no understanding, no intentions. the difficulty of collapsing or reducing mental, intentional explanations is stated clearly by john searle: so far no attempt at naturalizing content [meaningful beliefs and reasons] has produced an explanation (analysis, reduction) of intentional content that is even remotely plausible. a symptom that something is radically wrong with the project is that intentional notions are inherently norma- tive. they set standards of truth, rationality, consistency etc., and there is no way that these standards can be intrinsic to a system consisting entirely of brute, blind, nonintentional causal relations. . . . indeed, darwin’s major contribution was precisely to remove purpose, and teleology from evolu- tion, and substitute for it purely natural forms of selection. it will not do to dismiss searle’s point by appealing to the way that com- puters calculate because they simply are behaving in accord with pro- grams designed by humans. it is unreasonable to believe that computers actually reason or have any beliefs at all. computers are pure syntactic mechanisms with no intrinsic intentionality. one more modest point may be added in a reply to narveson. scrip- tural reference to god creating through speech (“god said, ‘let there be light’ ”) may be seen as representing creation as a supremely inten- tional, purposive act. among the ancients and many modern thinkers, language usage is considered the high- water mark of intelligence. by describing god as creating through speech, the key thesis is that creation occurs through purposive agency and goodness (“and god saw that it was good”) rather than through some thesis about the causal power of divine auditions. nielsen’s objection to theism seems as plausible as old- style forms of behaviorism in the theory of human nature or the radical materialism explored in chapter . stern forms of behaviorism, such as b. f. skinner’s and radical materialism, deny that there are any first- person experiences or consciousness behind a person writing e=mc , let alone “procrastina- tion drinks melancholy.” but once you allow that in human experi- ence there is more than bodily movement and physical processes, why not some big pictures then be open to there being more to the universe than the spatiotemporal objects and events revealed by science? there is no logical or grammatical error involved in referring to what is “transcendent to the universe” unless you beg the question and define “universe” as all that can be meaningfully thought about or referred to. that, i suggest, is hepburn’s difficulty. when theists claim that the cosmos is created by god, they do not thereby affirm that nothing in the cosmos is a reflection of god or shares in some measure of god’s being (for jews and christians, humankind is, after all, made in the image of god). moreover, theists, like most natural- ists, see the cosmos as contingent; the cosmos does not necessarily exist, that is, exist as a matter of necessity, as in: it would have been impossible for there not to be a cosmos. while the cosmos is contingent, god exists necessarily. there is no logical blunder in thinking that there is a neces- sary being who sustains the cosmos; it may be false but not incoherent. as for o’shaughnessy’s position about scientific versus theistic ex- planations, he seems to suggest that theism only works in vague contexts. perhaps o’shaughnessy thinks that god would only create the wave- length of a spectrum line to only four rather than eight or more decimal places. obviously, there is no such implied limitation in theism, which recognizes a god of limitless knowledge and power. moore’s position invites considering the fact that the cambridge pla- tonists (and other christian philosophers from the second century on- ward) appeal to a host of reasons for believing that there is a god. these reasons range from arguments about why there is a cosmos at all and why it continues in existence, to arguments about the apparent goodness and purposive nature of the cosmos. the emergence of consciousness, moral experience, the apparent experience of god, and more have all been employed in building up powerful theistic arguments. i have addressed and defended many of these arguments elsewhere. the function of this book, however, is not to rehearse these arguments. here, my aim is to clear the way for experiencing the world as consisting of multiple clues to god and then to explore the nature of such experience in light of chris- tian reflections on the eternity of god. while it might be beneficial to work up some of my favorite theistic arguments here, i propose to only defend one, central to this book’s project, namely, a theistic argument t h e g o l d e n c o r d from religious experience. (this is, after all, to be a short book). i shall do so in the next chapter, but first let me make three observations about moore’s specific claim about theism as a hypothesis, and then go on to consider the naturalist concern about the uniqueness of the universe as well as simple, comprehensive explanations. moore’s comparison of theism to the thesis that “there is a green, three- legged, ten- foot- tall woman in the middle of the road, only you can’t detect her” is problematic for at least three reasons. first, theists are not postulating the invisibility of a material being. the invisibility of an incorporeal or nonphysical being is different from the supposed in visi- bility of a material being. second, while the god of theism is incorporeal or nonphysical, this is not the same as claiming that god cannot be expe- rienced and thus not “detected.” and third, moore’s analogy is hard not to view as hostile because it likens theism to what seems like a freakish finite event with no implications about values. any serious critique should take seriously the fact that theism (especially in the platonic christian tradi- tion of this book) holds that there is a god of awesome, loving power who creates and upholds the whole cosmos. in classical christianity it is believed that god became incarnate in the son, who taught us to serve others, as in the good samaritan parable; but this model was about serv- ing an actual, visible man who is assaulted by the roadside, not about the imaginary woman in moore’s analogy. unique positions and an explanation the choice between theism and naturalism is not, i propose, a matter of one line of reasoning or a single argument, but a matter of a whole network of reasons. in this sense, philosophical reasons may function the way meaning in language functions: there is an interwoven linkage or system of connections. as i. a. richards puts it, “as the movement of my hand uses nearly the whole skeletal system of the muscles and is sup- ported by them, so a phrase may take its powers from an immense system of supporting uses of other words in other contexts.” a similar point can be made in philosophy. consider, for example, the very existence of some big pictures consciousness. if you assume at the outset a naturalistic, nonteleological view of the cosmos, then appealing to god’s generative, creative power in explaining consciousness or the cosmos will seem like a miracle or a parlor trick. but if you recognize the irreducibility and intelligibility of intentional explanations, matters differ. theism offers a comprehensive account as to why there is a contingent cosmos at all; and it exists and continues to exist because it is good. obviously, this claim needs to be assessed in light of the problem of evil (see chapters and ). some natu- ralists think that the cosmos is abhorrent and even claim that if they were the creator, they would not have created our cosmos. in any case, if you do assume an all- good, purposive, powerful divine creator, you do have an account of why there is a cosmos at all or why there is gravity and the basic physical laws that allow for life and its evolution. naturalists such as j. l. mackie argue that there are abundant rea- soned, scientific explanations of events within the cosmos, but they charge that we should not then be led to look for an explanation of the cosmos. mackie writes that we have no guarantee that our reason can operate reli- ably when it comes to the cosmos as a whole. perhaps there is no label attached to our cognitive faculties with a warranty, but doesn’t it seem like a natural extension of reason to ask about the cosmos itself? why does it exist and persist? i suggest that it seems ad hoc to avoid or rule out such bigger questions, especially as we can consider what appears to be a coherent answer. what about dawkins’s argument about complexity and simplicity? as suggested earlier, theism can be seen as a profoundly simple hypothe- sis: god is a singular, purposive, good reality whose comprehensive inten- tion that there be a cosmos at all does not compete with the empirical and theoretic sciences but provides an account as to why science is successful at all. why should there be a cosmos of physical constraints? the very existence of a big bang . billion years ago with its hydrogen explo- sion producing helium, the nuclear reactions that eventually produced stars and carbon and eventually planets and life (at least on our planet), is itself an object of awesome wonder inviting us to ask why it is so and why it should endure. the four key elements of our cosmos need to be sufficiently in balance in order for life to emerge and evolve: gravity, the t h e g o l d e n c o r d weak force, electromagnetism, and the strong nuclear force binding neu- trons and protons in an atom. there would be no chemistry if the elec- tromagnetic force did not exist. if the balance between electromagnetism and gravity were different, then the stars would either be too short- lived (blue giants) or too feeble (red dwarfs) to support life. naturalism gives us only the thesis that the cosmos is a brute fact, not further explainable as a whole. but we are still left with the question of why there is a contingent cosmos as a whole. the contrary point that theists are also stuck with a brute fact (what or who made god?) rests on a failure to understand the idea of god in classical theism. if there is a god, then god’s essence (what god is) is existence (that god is). god’s existence is itself necessary and not contin- gent. god’s very essence or identity is existence. o’connor offers this exposition of god’s necessity: the claim that there is a necessary being is the claim that there is a being whose nature entails existence, so that any possible world would involve the existence of such an entity. such a being, we might say, is absolutely invulnerable to nonexistence. by way of relevant contrast, were there a being which was causally immune from destruction (no existing thing or collection of things have the capacity indirectly or directly to destroy it), but whose existence was contingent, it would still, in the end, just happen to exist. were such a being conscious, it could sensibly feel fortunate that it exists, even though it owes its existence to no existing thing. in classical theism, the very concept of god is the concept of a being of unsurpassable, underived excellence; a contingent being of great power and knowledge would lack a key divine attribute. in his work on the trinity, augustine offers the following brief contrast between the contin- gency of humanity in contrast to the essential necessity of god: “with the human soul, to be is not the same as to be strong, or prudent, or righteous, or temperate; for the soul is able to exist while having none of these virtues. with god, however, to be is to be strong, to be righteous, to be wise, and to be whatever else you can say of that simple multi- plicity or multiple simplicity by which his substance is signified.” if some big pictures god exists, god’s very nature is the nature of superabundant and thus necessary excellence. what about the uniqueness of the cosmos? does that forestall in- quiry? it has not in terms of physics and cosmology, which have generated competing theories of the natural causes of the cosmos. the uniqueness of the cosmos seems to be no barrier to scientific theorizing. also, we do have reasonable positions about realities that are unique. consider, for example, the question of nonhuman consciousness or mental life. we will never become nonhuman animals (unless reincarnation across spe- cies is in the offing), and so none of us will know directly what it is like to be a nonhuman animal. the nonhuman animal mind is not unique in the sense that there is only one mind, but the realm of nonhuman consciousness is unique in the sense that we have no direct access to it, so as to compare and assess animal mentality. and yet few of us are content with ruling out the question of whether some nonhuman animals are conscious. (i myself believe that some nonhuman animals are person- like, such as dolphins and the great apes.) the uniqueness of the cosmos and the uniqueness of animal minds do not block inquiry into theism or into a consideration of the case for animal consciousness. indeed, i suggest that theism offers a profoundly simple, coherent, unified understanding of the cosmos. evans on cranes and skyhooks when thinking about big pictures of the cosmos, it is imperative to con- sider the imagery or metaphors that are employed. jil evans has under- taken a trenchant investigation into the way that dennett and dawkins use the metaphors of a skyhook versus a crane to describe the difference between a theistic worldview and the philosophy of naturalism. here is dennett’s set- up of these images: let us imagine that a skyhook is a “mind first” force or power or process, an exception to the principle that all design and apparent design is ultimately the result of mindless, motiveless mechanicity. a crane, in contrast, is a subprocess t h e g o l d e n c o r d or special feature of a design process that can be demonstrated to permit the local speeding up of the basic, slow process of natural selection, and that can be demonstrated to be itself the predictable (or retrospectively explicable) product of the basic process [emphasis mine]. dawkins offers a similar portrait of naturalism versus theism. one of the greatest challenges to the human intellect . . . has been to ex- plain how the complex, improbable appearance of design in the universe arises. the natural temptation is to attribute the appearance of design to actual design itself. . . . the temptation is a false one, because the designer hypothesis immediately raises the larger problem of who designed the de- signer. the whole problem we started out with was the problem of ex- plaining statistical improbability. it is obviously no solution to postulate something even more improbable. we need a “crane,” not a “skyhook.” for only a crane can do the business of working up gradually and plausibly from simplicity to otherwise improbable complexity. the most ingenious and powerful crane so far discovered is darwinian evolution by natural se- lection. darwin and his successors have shown how living creatures, with their spectacular statistical improbability and appearance of design, have evolved by slow, gradual degrees from simple beginnings. evans rightly points out that these images are anything but fair. “the sky- hook isn’t just weightless or inadequate; it is an absurdity.” apart from being an evident absurdity, the image of the skyhook belies the claim that theism offers a deep, comprehensive account of the cosmos. equating theism with a skyhook ignores the central claim of theism: the very potential for existence in theism is not in a thing, but in a being. the grounding of the cosmos (with all its cranes, suns, cosmic growth and decay, equilibrium and dynamism) in a deeply personal reality is in a great, omnipresent, intentional being who is anything but (in dennett’s terms) mindless or motiveless. in theism, god is understood as necessarily existing; god is not dependent upon any external causal laws or forces to sustain god in being. both dennett and dawkins write as though if there some big pictures is a god, god’s existence needs to be explained through physical laws. if one imagines god as one of a species, a material thing or a blind force, their view makes sense, but as many have pointed out, . . . dennett and dawkins seem to completely misunderstand the nature of theism. . . . if god exists, god’s existence is not due to any sort of explanation, or at least not one involving probabilities. as evans points out, the image of the crane is designed to assure us that naturalism is well grounded and concrete with its bottom- up explanation, but it also invites the questions: where is the crane? why does it exist? presumably you would have no crane without a cosmos, stable laws of nature, and so on. why is there such a cosmos rather than not? although the imagery is designed to silence or to quiet such questions, all such questions are very much alive. daniel dennett, julian of norwich, and comprehensive accounts inquiry into a comprehensive philosophy of life, whether it be an investi- gation of theism, naturalism, or any number of other big pictures, is rarely cut off from an inquiry into values, and so it is fitting to end this chapter with a contrast between naturalistic and theistic values. this last section is devoted to what some of my students sum up in a succinct, two- word question: so what? the naturalist dennett’s profession of values is a good place to start: my sacred values are obvious and quite ecumenical: democracy, justice, life, love, and truth (in alphabetical order). i too, want the world to be a better place. this is my reason for want- ing people to understand and accept evolutionary theory: i believe that their salvation may depend on it! how so? by opening their eyes to the dangers of pandemics, degradation of the environment, and the loss of biodiversity, and by informing them about some of the foibles of human nature. so isn’t my belief that belief in evolution is the path to salvation a religion? no; there is a major difference. we who love evolution do t h e g o l d e n c o r d not honor those whose love of evolution prevents them from thinking clearly and rationally about it! on the contrary, we are particularly critical of those whose misunderstandings and romantic misstatements of these great ideas mislead themselves and others. in our view, there is no safe haven for mystery or incomprehensibility. yes, there is humility, and awe, and sheer delight, at the glory of the evolutionary landscape, but it is not accompanied by, or in the service of, a willing (let alone thrilling) aban- donment of reason. so i feel a moral imperative to spread the word of evolution, but evolution is not my religion. his invocation of evolution certainly sounds religious: it involves a call for salvation, for spreading “the word;” it involves humility, awe, delight, and glory. it is a pity that dennett seems to assume that he would be ac- cepting evolutionary theory as a religion only if he abandoned reason or sought a haven in mystery and incomprehensibility. (defining “religion” so that it is essentially irrational begs the question and is monumentally unfair.) in any case, clearly dennett invokes many values that theists readily embrace and treat as eternal. in brief, if you value democracy, justice, life, love, and truth, you might be lead to critically investigate dennett’s naturalism. there are some serious problems with whether evolutionary theory can ground or provide a sufficient basis for dennett’s values. after all, darwin himself thought that certain events that we presumably find hor- rifying, such as those causing racial extinction, are natural periods of evo- lution. arguably, this would be an instance when the course of evolution conflicts with our sense of dennett’s “democracy, justice, life, love, and truth.” but here i suggest a different point: the values identified by den- nett would be magnified in christian theism. if you are drawn to his values, then you may be drawn not only to consider his naturalism but also to consider a broader, theistic framework. consider the revelations of divine love by the english mystic julian of norwich. in one of her great mystic visions of creation, she observes: and in this vision he showed me a little thing, the size of a hazel- nut, lying in the palm of my hand, and to my mind’s eye it was as round as any ball. some big pictures i looked at it and thought ‘what can this be?’ and the answer came to me, ‘it is all that is made.’ i wondered how it could last, for it was so small i thought it might suddenly disappear. and the answer in my mind was, ‘it lasts and will last forever because god loves it; and in the same way everything exists through the love of god.’ in this little thing i saw three attributes: the first is that god made it, the second is that he loves it, the third is that god cares for it. but what does that mean to me? truly, the maker, the lover, the creator; for until i become one substance with him, i can never have love, rest or true bliss; that is to say, until i am so bound to him that there may be no created thing between my god and me. in this cosmic setting, dennett’s values would be magnified or intensified. for julian, it is god’s loving creativity that sustains a world in which there is love. the platonic theistic tradition affirms as eternal values the kinds of values that dennett identifies. loving and acting on and for the good is an eternal or everlasting value, not contingent upon whether such love is inconvenient or transient. dennett’s values of democracy, justice, life, love, and truth may receive a magnified, even eternal standing, given the- ism. while it may seem absurd to link dennett with julian of norwich, some theologians, such as jacques maritain, might see dennett as really seeking god, notwithstanding his claim to atheism. maritain writes: to every soul, even to one ignorant of the name of god, even one reared in atheism, grace proposes, at the moment when this soul deliberates about itself and chooses its ultimate—grace, by the medium of the moral good, proposes as supreme reality to be loved above everything, even if this soul represents this reality to itself under a name which is not its true name— but then (and this is the whole question, and only god knows whether it is so) in thinking under this name something other than what it signifies, in going beyond this idol’s name—grace proposes the subsistent good which merits all love and through which and in which our life is saved. and if this grace is not refused, the soul in question, in opting for this reality, believes obscurely in the true god and chooses really the true god, even though, being in good faith in error and adhering not by its fault, but by that of the education it has received, to an atheistic philosophical t h e g o l d e n c o r d system, it masks this faith- unconscious- of- itself in the true god under formulas which contradict it. an atheist of good faith—a pseudo- atheist, in reality—will in that case have, against his own apparent choice, really chosen god as end of his life. if maritain is right, then perhaps dennett is not completely at odds with julian. of course, the case for theism cannot rest on wish fulfillment. the evidence may require us to conclude that julian’s vision is not acces- sible or justified. perhaps, like the end of hemingway’s the sun also rises, we should resign ourselves and conclude that some relations and goods are not to be. in the novel, jake barnes (an american veteran of world war i, a journalist, and the narrator) is in a taxi with lady brett ashley (a fickle, confused, but passionate british socialite whom jack loves) en route for brett to renew a relationship with another man. the last lines of the novel are: “oh, jake,” brett said, “we could have had such a damned good time together.” ahead was a mounted policeman in khaki directing traffic. he raised his baton. the car slowed suddenly, pressing brett against me. “yes,” i said. “isn’t it pretty to think so?” the lament is haunting, allowing for a mere hint at what might have been. in the next chapter let us consider religious experience itself, and its prospect for providing us with a clue or golden cord to the god of julian of norwich. c h a p t e r some real appearances no unity with god is possible except by an exceedingly great love. —saint dimitri of rostov in , i attended a philosophy conference in hong kong. near the end of three days of meetings, we—a group of chinese and american phi- losophers—were dining at a restaurant overlooking the port. it turned out to be a very non–virginia woolf dinner party and much more like that summer night in the s with w. h. auden. most of us happened to be christians, though we differed considerably on this or that philo- sophical position. the meal proceeded with personal, at times intimate, conversations about life’s difficulties. earlier, on the balcony, i was talk- ing to two british philosophers, both roman catholic, and one with considerable experience in monastic life. as the meal ended, however, i felt dizzy with a sharp pain in my chest. one of my companions asked calmly, “are you alright? would you like some air? perhaps you should return to the balcony.” i did. and waited. the pain subsided and i was t h e g o l d e n c o r d prepared to rejoin the others. “wait. stay as long as you like.” the feeling i had then was not exactly akin to augustine and his mother monica, but it was close. here is the vision of god recorded by augustine in his confessions. in my case, i was not with my mother and my experience of the divine was not a joint venture through conversation. it was, instead, a more quiet, tangible event. but, consider augustine: not long before the day on which [monica] was to leave this life—you knew which day it was to be, o lord, though we did not—my mother and i were alone, leaning from a window which overlooked the garden in the courtyard of the house where we were staying at ostia. we were waiting there after our long and tiring journey, away from the crowd, to refresh ourselves before our sea- voyage. i believe that what i am going to tell happened through the secret working of your providence. for we were talking alone together and our conversation was serene and joyful. we had forgotten what we had left behind and were intent on what lay before us . . . we laid the lips of our hearts to the heavenly stream that flows from your fountain, the source of all life which is in you, so that as far as it was in our power to do so we might be sprinkled with its waters and in some sense reach an understanding of this great mystery. as the flame of love burned stronger in us and raised us higher to- wards the eternal god, our thoughts ranged over the whole compass of material things in their various degrees, up to the heavens themselves, from which the sun and the moon and the stars shine down upon the earth. higher still we climbed, thinking and speaking all the while in won- der at all that you have made. . . . then with a sigh, leaving our spiritual harvest bound to it, we returned to the sound of our own speech, in which each word has a beginning and an ending—far, far different from your word, our lord, who abides in himself for ever, yet never grows old and gives new life to all things. while i did not exactly pass through “all the levels of bodily objects,” still, i did have what seemed like a blissful experience of the sacred, a transport- ing sense of the divine. some real appearances upon reflection, i believe that my experience was informed by a link between my acquaintance saying, “wait. stay as long as you like,” and one of my favorite lines from goethe, “stay, moment, stay, for you are so fair.” the line comes from faust and, when first introduced, is a bit sinister. in his pact with the devil (mephistopheles), when faust utters this phrase, the devil may take his soul captive. nonetheless, when faust finally does say, “stay, moment, stay, for you are so fair,” he has finally come to a different place spiritually. he has seen the futility and disastrous consequences of his lust and sees value in what is at hand. it was the sav- ing character of this delight in the moment that leads god to save faust, in the end, and frustrate the devil’s plan. whether or not this reading of faust holds up in terms of nineteenth- century german literary criticism, the desire for a moment to stay, to endure outside of clock time, has often colored my deepest experiences in life: falling in love, being with friends recently at jil’s birthday party, conversing with a friend, reconciling with someone after a long period of estrangement, celebrating a friend’s recov- ery from a brain operation, and recalling the sheer joy i knew as a boy at my family’s kitchen table. these are moments—moments of depth and grace—when i do not wish to be anywhere else. on the balcony in hong kong i felt a similar, almost timeless sense of an arresting, divine presence. can these sorts of experiences be taken seriously? a few months after the experience i emailed my fellow philosopher and reported my quasi- augustinian experience that evening. at the time, i did not tell her about my little encounter with “the fountain of life” but said that i had told my spiritual director about it. my friend replied: “i think you’d better share it with your doctor!” are these examples of spiritual awareness cases for medicine rather than for metaphysics? let me offer three cases similar to mine, ranging from the famous to the not so famous. first, william wordsworth’s celebrated poem “tintern abbey”: and i have felt a presence that disturbs me with the joy of elevated thoughts; a sense sublime of something far more deeply interfused, whose dwelling is the light of setting suns, t h e g o l d e n c o r d and the round ocean and the living air, and the blue sky, and in the mind of man: a motion and a spirit, that impels all thinking things, all objects of all thought, and rolls through all things. second, richard bucke, a well- known canadian psychologist of the late nineteenth century, reports: all at once, without warning of any kind, he found himself wrapped around as it were by a flame- colored cloud. for an instant he thought of fire, some sudden conflagration in the great city; the next, he knew that the light was within himself. directly afterward came upon him a sense of exultation, of immense joyousness accompanied or immediately followed by an intellectual illumination quite impossible to describe. into his brain streamed one momentary lightning- flash of the brahmic splendor which has ever since lightened his life; upon his heart fell one drop of brahmic bliss, leaving thenceforward for always an aftertaste of heaven. among other things he did not come to believe, he saw and knew that the cosmos is not dead matter but a living presence, that the soul of man is immortal, that the universe is so built and ordered that without any peradventure all things work together for the good of each and all, that the foundation principle of the world is what we call love and that the happiness of every- one is in the long run absolutely certain. and third, the english christian theologian leslie weatherhead writes: for a few seconds only, i suppose the whole [train] compartment was filled with light. this is the only way i know in which to describe the moment, for there was nothing to see at all. i felt caught up in some tre- mendous sense of being within a loving, triumphant and shining purpose. i never felt more humble. i never felt more exalted. a most curious, but overwhelming sense possessed me and filled me with ecstasy. i felt that all was well for mankind—how poor the words seem! the ‘well’ is so poverty stricken. all men were shining and glorious beings who in the end would some real appearances enter incredible joy. beauty, music, joy, love immeasurable and a glory unspeakable, all this they would inherit. . . . in a few moments the glory departed—all but one curious, lingering feeling. i loved everybody in that compartment. it sounds silly now, and indeed i blush to write it, but at that moment i think i would have died for any one of the people in that compartment. all three testify to a felt, living presence. for wordsworth, this presence is felt as animating and intertwined with the natural world. writing about his experience in the second person, bucke speaks of a “brahmic splen- dor” that enables him to see himself and the cosmos in terms of love and goodness. weatherhead’s sense of love for others is akin to auden’s mysti- cal experience, cited in the introduction. these cases seem to support the thesis of one of the great twentieth- century studies of religious experience, the idea of the holy, by rudolf otto, who coined the words numen and numenous to refer to the divine or sacred that is regarded as fascinating (fascinans) and mysterious (mysterium). if otto is right, then the experi- ence of the divine is forceful and positive—it is a felt encounter with what appears to be real—as opposed to an inference. friedrich schliermacher had earlier analyzed religious experiences in terms of a felt dependency on some greater reality that one infers or interprets as divine. otto’s study led him to think of religious experience in terms of more directly apprehend- ing or encountering what schliermacher saw as an inference to that on which we (and the cosmos) depend. there are a range of philosophers today who believe that, in the ab- sence of strong reasons for doubting these visions, we should trust these experiences as evidencing a divine reality. the principle at work here has been called the principle of credulity or the principle of charity, sometimes articulated as the dictum that we should trust appearances unless we have positive reasons for doubting them. another way to positively approach religious experiences would be to presume that they are innocent (reli- able) until proven guilty (unreliable). following kai- man kwan, i suggest using the term critical trust, such that if a person seems to experience a reality, and the person has some reason to think that the object of experi- ence exists or at least its existence is possible, then the person has reason to t h e g o l d e n c o r d trust such an experience as reliable. the trust is critical insofar as it is not a principle of gullibility on which anything goes. also, the experience here is understood to be observational; an ostensible and apparent experience of x involves x appearing to be present or x being revealed or disclosed as real. on this view, the appearance of x is not the experience of a judg- ment that some state of affairs is true. there is a difference between a person reporting that it appears to her that god exists (as the result of an argument, for example) versus reporting that god appears to her. perhaps one helpful way to mark the evidential difference would be to compare two persons who are reading the bible, a secular naturalist and a “be- liever” who experiences scripture as an authentic revelation or disclosure of the divine. in the first case, the reader may experience the god of the bible in the way one experiences a character in a novel (readers may love gandalf as he appears in the lord of the rings trilogy), but in the case of the believer, she may have what she believes to be an authentic encounter with (or disclosure of ) god or the things of god (awareness of the mercy of god, for example) through the bible. before digging into critical objections to trusting ostensible religious disclosures of the divine, i suggest a point that is similar to a theme in chapter : we should only reluctantly adopt a method of inquiry that as- sumes from the outset that a divine disclosure or encounter is unnatural, a violation or contortion of nature or a violation of the very nature of religion. the next section aims to remove some of these obstacles. (in the first chapter i proposed that we should not begin with a methodology like dennett’s, which, from the start, treats as suspect any appeal to the mental.) revelation and the obstacle course from time to time, obstacles to accepting revelation claims have been set up. let us very briefly consider two of these—the philosophical worries about oracles and also about what was known as “enthusiasm”—and then spend a little more time on david hume and two contemporary thinkers who define “revelation,” “experience,” “god,” and “history” in ways that some real appearances make the experiential encounter with god unnatural, absurd, antireli- gious, or a conceptual monstrosity. philosophers and oracles: one reason why philosophy may have flour- ished in ancient greece is because philosophical questions were not ad- dressed by oracles or other officially recognized means of divine revelation. if oracles had endorsed philosophical views (for instance, if apollo, ac- cording to the oracle, declared that justice is not as important as beauty), then philosophers who questioned such divinely revealed precepts might have been in even greater danger of accusations of impiety than they were. we have no reason to think that the oracle of delphi was ever asked a philosophical question. philosophers like arguments. this became appar- ent to me when one of my professors complained, referring to a rival at harvard university, that he was good on pronouncements but short on arguments: “he thinks he’s the bloody oracle of delphi!” ancient philosophers took at least one pronouncement of the ora- cle of delphi seriously. a friend of socrates was told by the oracle that socrates was the wisest person in athens. this pronouncement seems to be what motivated socrates to challenge others about the nature of wisdom. and jewish, christian, and muslim philosophers have worked fruitfully through the medieval era until today, balancing revelation claims with independent philosophical reflection that did not draw on revelation. ignoring reports of divine revelation would be like practicing a philo sophi cal inquiry into consciousness, without asking other persons about their thoughts, feelings, and so on. the danger of enthusiasm: in the seventeenth century the term “en- thusiasm” was used to refer to states of mind in which persons may be especially prey to unwarranted beliefs. the worry, expressed perhaps with greatest urgency by hume and immanuel kant, was that courting revela- tion claims would lead to waves of irrational beliefs. in reply to this concern, i suggest there is no place that is safe from what used to be called enthusiasm. i know followers of hume and kant today who seem entirely subject to waves of irrationality. hume’s thesis that revelation is unnatural: hume famously argued that miracles are violations of the laws of nature. there was something unnatu- ral or invasive about reported events in which god is revealed. hume’s t h e g o l d e n c o r d case against the rationality of belief in miracles has been widely discussed. less widely appreciated is the fact that the same strategy that hume em- ployed against signs of divine intelligence was also used by him to doubt reports of intelligence among black africans and other nonwhites. here is hume’s famous characterization of miracles and his judgment that they cannot reasonably be thought to occur: a miracle is a violation of the laws of nature; and as a firm and unalterable experience has established these laws, the proof against a miracle, from the very nature of the fact, is as entire as any argument from experience can possibly be imagined. . . . and as a uniform experience amounts to a proof, there is here a direct and full proof, from the nature of the fact, against the existence of any miracle; nor can such a proof be destroyed, or the miracle rendered credible, but by an opposite proof, which is superior. hume holds that all of our experiences that miracles do not occur (we do not routinely observe persons being resurrected, for instance) count against reports of a resurrection. a wise man . . . proportions his belief to the evidence. in such conclusions as are founded on an infallible experience, he expects the event with the last degree of assurance, and regards his past experience as full proof of the future existence of that event. in other cases, he proceeds with more caution: he weighs the opposite experiments: he considers which side is supported by the greater number of experiments: to that side he inclines, with doubt and hesitation; and when at last he fixes his judgment, the evi- dence exceeds not what we properly call probability. all probability, then, supposes an opposition of experiments and observations. hume, however, like kant, defined negros (and other nonwhites) so as to make belief in their intelligence just as unreasonable as belief in divine intelligence. let me be very clear here: i am not arguing that hume’s case against miracles should be rejected because he was a racist. rather, i am pointing out that his strategy of ruling out divine intelligence is inter- estingly similar to his case against intelligence among certain groups of some real appearances humans. and this raises an important point about values in our inquiry. in a notorious passage, hume states: i am apt to suspect the negroes and in general all of the other species of men (for there are four or five different kinds) to be naturally inferior to the whites. there never was a civilized nation of any other complexion than white, nor even any individual eminent either in action or specula- tion. no ingenious manufactures amongst them, no arts, no sciences. . . . such a uniform and constant difference could not happen, in so many countries and ages, if nature had not made an original distinction betwixt these breeds of men. not to mention our colonies, there are negro slaves dispersed all over europe, of which none ever discovered any symptoms of ingenuity. . . . in jamaica indeed they talk of one negro as a man of parts and learning; but ’tis likely he is admired for the very sheer accomplish- ments like a parrot, who speaks a few words plainly. for hume, there has been a uniform and constant association of whites and superior intelligence, and of nonwhites and inferior or little intel- ligence. he acknowledges reports of exceptions but dismisses this talk in light of his view of the regular, uniform, exceptionless character of nature. he is so convinced of this uniform association that he offers an explana- tion of the ostensible anomalies. it is more probable that blacks merely simulate intelligence, in the way a bird simulates human language, than that they are as intelligent as european whites; presumably, both apparent exceptions can be accounted for in the same way by the laws of nature as hume conceives them. when it came to miracle narratives, hume was convinced that reck- less imagination and wish fulfillment were at work. primitive people have a natural love of wonder, surprise, and agreeable emotions. hume may have thought that reports of black or other nonwhite intelligence was akin to miracle narratives, that is, were motivated by wish fulfillment and the love of wonder, surprise, and agreeable emotions. as it happens, the man from jamaica referred to by hume in the pas- sage above was the eighteenth- century jamaican francis williams, who earned a degree from cambridge university, headed a school, and was t h e g o l d e n c o r d known for his latin poetry. in hume’s day, roughly ten thousand blacks were living and working in london. an eighteenth- century black ameri- can poet, phillis wheatley, traveled to london, where she publicly wrote and recited poetry. hume’s judgment, however, was fixed against reports of intelligent nonwhites and reports of miracles. perhaps his assumptions about the nature of black africans made him unobservant of their suc- cesses, just as an individual who does not believe in miracles will not actively search for them in cathedrals. it seems to me that matters need to be reversed. if the evidence of in- telligence, ingenuity, and skill among all peoples seems to some less than perfect, as it often has in the past and even today, pascal’s wager is at hand to motivate people to be open to such evidence. pascal in the seventeenth century and william james in the nineteenth stressed the importance of values in inquiry: if we have some reason to think there is value to some belief (such as the belief in god or the belief in the dignity of all people), we should not adopt a form of inquiry that will rule out, from the outset, the attainment of such valuable beliefs. similarly, unless we have positive reasons for thinking theism is incoherent, we should not characterize the ostensible experience of the divine as unnatural. the cambridge platonists were the exact opposite of hume on such matters. they believed we should treat as natural and good (albeit with a certain amount of critical reasoning) the ostensible experiences of the divine and that we should also be open to the intelligence and goodness of fellow humans, notwithstanding our superficial differences. peter sterry’s invocation to openness is typical of those in the movement: “do you so believe that in every encounter you may meet under the disguise of an enemy, a friend, a brother, who, when his helmet shall be taken off, may disclose a beautiful and well known face, which shall charm all your op- position into love and delight at the sight of it.” in the problem of slavery in western culture, david brian davis credits cambridge platonism as laying the groundwork for rejecting the racism and white supremacy of their day. davis summarizes the cambridge platonist outlook as follows: for beneath a superficial diversity of cultures one might find a universal capacity for happiness and contentment, so long as man’s natural faculties some real appearances had not been perverted by error and artificial desire. we must look to primitive man, said benjamin whichcote, if we would seek man’s moral sense in its pristine state. natural law, said nathaniel culverwel, is truly recognized and practiced only by men who have escaped the corruptions of civilization. if traditionalists objected that savages were ignorant of the gospel, the answer was that heathen might carry within them the true spirit of christ, and hence be better christians than hypocrites who knew and professed all the articles of faith. on not defining “experience,” “history,” and “revelation” so as to make revelation or the disclosure of god in experience impossible, unnatural, or implausible: samuel fleishacker and wesley wildman both employ cate- gories that seem prejudiced against recognizing experiences of god or divine revelation. according to fleishacker, to call god speaking on sinai (or as jesus in the galilee, or, through the angel givreel, to muhammad) an “historical fact” is to say that historical methods of investigation would suffice to establish it. but they would not. the very idea of god is the idea of a being beyond all nature, who can con- trol nature itself. . . . no amount of historical evidence could ever prove that that being appeared at a point within the natural course of things. indeed, the mere idea that they could prove such a thing is a betrayal of the idea of god, a suggestion that god is just one being in the universe among others. for god’s appearance in history to be pinned down by scientific investigation would be for god to be subject to the forces of the universe, rather than to be the source of or governor of those forces. a god who can be studied by science is an idol, rather than god, even if there is just one such god, and to believe that the unique god in or on whom the universe is supposed to rest can be known scientifically is to reduce monotheism to idolatry. fleishacker caricatures divine revelation as follows: even if, say an apparently disembodied voice, accompanied by thunder and mysterious trumpet blasts, once uttered remarkable accurate prophecies t h e g o l d e n c o r d and deep nuggets of moral wisdom, that would indicate just that there are powers in the universe beyond those with which we are acquainted. erich von däniken’s hypothesis, in chariots of the gods, that all supposed reli- gious revelations are really records of visits to earth by intelligent creatures from outer space is very silly, but as an empirical explanation of sinai, it is better than the hypothesis that the speaker was god. . . . the notion of a power overturning the usual course of events, whose presence can yet be determined by scientific means, is just a notion of an unusual, surprising power within the universe, a sort of magic or a force hitherto relegated to science fiction. the notion of god speaking, or otherwise intervening in human history, defies our very conception of how nature works, and of what a historical event is. so the hypothesis that god has spoken to us can neither be confirmed nor disconfirmed by the findings of historians, or other scientists. in his science and religious anthropology, wesley wildman similarly de- scribes experiential revelation as conceptually impaired. according to wildman, the experiential encounter with god in theistic tradition is the encounter with “disembodied intentionality.” god, angels, and ghosts are “discarnate intentional beings.” in rejecting theism, naturalists hold that there are “no disembodied forms of intentionality, no disembodied powers.” i offer five succinct replies. first, the idea that if god is the god of nature, then god cannot be manifested in or experienced in the natural world, seems entirely ungrounded. if god can control nature, wouldn’t it rather seem to be a limitation of divine agency if god could not act in the created order? second, describing revelation or religious experience in terms of “dis- embodiment” seems at the very least misleading. “disembodiment” is the contrary of “embodiment” and suggests something impaired or damaged. one may think of the experience of god as the encounter with something incorporeal but not disembodied. (recall that for integrative dualists, a person is incorporeal and yet is embodied.) third, the idea that if god is experienced, then god would become or could become an idol is, at the least, peculiar. a thing need not be some real appearances experienced to be an idol (someone might even worship the absence of religion), and many things can be experienced without risk of idolatry (myself, for example). moreover, on some accounts, god experiences (or is at least cognitively aware of ) god’s self. would that mean god might become an idol for god? fourth, i know of no reason to think that an experience of x entails that x is merely one thing of possibly many things of the same species. finally, the term “history” can be used to refer to that which is stud- ied or confirmed through historical inquiry, but it can also simply mean “the past.” someone can believe that (for example) jesus rose from the dead and that this is a matter of historical fact, without (a) claiming to prove this or (b) claiming that it can be established through historical inquiry. in addition, (c) we believe many things intelligibly about the past and present (free will, moral realism, and so on) without claiming to prove or know or settle the matter through science or philosophy. having cleared away some of the obstacles to recognizing the ex- perience of god, let us consider in further detail three objections: the problem of verification, the unreliability of religious experience, and an objection from religious diversity. the problem of verification michael martin and john schellenberg hold that we have no independent way of confirming the reliability of religious experiences. there is no way to cross- check them. arguably, in our ordinary perception of material objects, we can simply check whether our perceptions are accurate or not. we may collectively and publicly confirm or disconfirm our sensory expe- riences. many religious experiences, however, seem private. a reply to this objection is that a very strong version of the demand for cross- checking would also threaten ordinary perception. i suggest that skepticism is a powerful challenge to anyone who recognizes the logical possibility that we can all be mistaken about our perceptions of ourselves and the world. how do you know that you are not in the matrix rather than doing what you appear to be doing, say, riding the subway while t h e g o l d e n c o r d reading this book? knowledge about other people’s states of mind also seems to elude ironclad verification. wildman addresses this reply, which has been endorsed by the highly respected philosopher william alston. alston’s strategy, wild- man argues, is to “panic” his readers into thinking that none of their faculties are infallible and incorrigible (incapable of falsehood and re- vism) and that they must simply be presumed (rather than known) to be reliable. in fact, alston deliberately attempts to induce an epistemic crisis by ar- guing that all belief- forming practices—from sense perception to mem- ory and from introspection to inductive and deductive reasoning—are subject to the same inevitably circular form of justification. after get- ting everyone panicked about circularity, and thus about the justification of all belief- forming cognitive practices, he plays the pragmatist’s card, or perhaps it is merely a half- card: he points out that there is nothing wrong with circularity. . . . all belief- forming practices operate by ven- turing beliefs on the presumption of reliability and subsequently evaluat- ing results. but wildman argues that such a move is ineffectual. he resists any temp- tation toward global skepticism and instead trusts naturalistic accounts of our tendency to error and the success of scientific studies of errors. for example, because of this [the possibility of error], psychologists have gone to great efforts to chart the limits of the accuracy of sense perception, discovering the conditions under which we are likely to misperceive, and tying this in to the types of mistakes that human beings are likely to make in form- ing beliefs. . . . these data on sense- perceptual and cognitive errors have helped cognitive neuroscientists to track down some of the brain processes underlying sense perception, both when it produces accurate beliefs and when it does not. evolutionary psychologists working on cognition have tried to identify the kinds of evolutionary pressures that produced the sensory apparatus that misfires in precisely these ways. some real appearances all of the tests wildman cites are tests within an overall framework that is presumed to be reliable and not open to question. but i suggest that radical skepticism cannot be dismissed so easily. a philosopher who enter- tains the possibilities of radical skepticism is wondering about the whole scientific framework, and, because of this, wildman’s diagnosis of why errors are made begs the question; the radical skeptic questions whether the study of errors is itself reliable. one other point to appreciate: not all reported religious experiences of the divine are private. from the standpoint of christian theism, a well- attended eucharistic service may be an occasion in which many people, together, sense god’s love. my experience in hong kong was private in the sense that my friend did not share the augustinian moment, but au- gustine’s experience was shared with someone, monica. there are more objections to consider here, but i know of no reason why entire congre- gations and communities cannot have a collective sense of god’s pres- ence. the sense of god need not be akin to bucke’s “flame- colored cloud” or weatherhead’s light; it might simply take the form of feeling a great love for others in which this emotion is experienced as part of a greater divine love. unreliability of religious experience schellenberg acknowledges that there are extensive, impressive traditions of religious experience and interpretation, but he thinks that reported religious experiences are so varied and conflicted that we should not use a principle of charity and assume that they are innocent until proven guilty. many “religious experiential belief- forming practices” may be known to be false, and so we should be cautious when deciding how to proceed. according to schellenberg, there are ever so many ways in which a doxastic practice [the practice of forming beliefs] could be socially established and yet also [be] the pur- veyor of utterly false beliefs. indeed, plenty of actual patterns of belief . . . could be called upon to make this point. one need only think about t h e g o l d e n c o r d false beliefs concerning the shape of the earth, or the alleged inferiority of women, or claimed conspiracies and plots engineered by jews or other minority groups. and, of course, religion itself presents an obvious and uncontroversial example since the outputs of religious experiential belief- forming practices conflict, and thus not all such practices can be reliable: in virtue of this fact we know that right now there are socially established religious practices purveying mostly false beliefs, failing to put anyone in effective touch with reality, regardless of their fruits. for schellenberg, we would be wise to trust only our basic faculties, our “common inheritance”: because we find ourselves unable to not form and revise beliefs on the basis of sense perception, introspection, memory, and rational intuition, a cer- tain basic picture of the world has been generated involving birth and con- scious experience and physical objects and relations with other conscious beings and the reality of things past and death and also the appropriate- ness of valuation (presupposed by the humblest desires, and sanctioned by intuition). this picture appears to be our common inheritance. it becomes the very fabric of a human being, affecting one’s sense of identity and of connectedness to others and of value and thus also of the appropriate goals, including intellectual goals. what we can see here . . . is that we are not independent, truth- registering machines that care not what the truth is and would question everything if we could, but rather deeply human inquirers, whose humanity and the basic picture with which it is inter- twined do much to shape the nature of our inquiring impulse. indeed, that very impulse itself, whatever shape it takes, is deeply conditioned by aspects of our “basic picture”; in particular, it is inextricably interwoven with valuation—how could one desire truth or nobly determine to see the truth, whatever it may be, without thinking it good to do so? . . . indeed, with a proper awareness of the nature of that picture, and proper inves- tigative senstitivities, we can see that if we are to embrace religious belief at all, it should be because investigation suggests that we need to do so in order to properly extend or accurately fill out the picture. some real appearances in reply, i suggest that many apparent conflicts in religious experi- ence are less deep than schellenberg supposes. the same divine reality may be experienced as personal or impersonal, as oceanic and awesome, or as humble and intimate. many christian theologians have been open to the ways in which diverse experiences of the sacred may be seen as complementary. also, schellenberg seems to radically overstate the extent to which world religions fundamentally disagree. take judaism, christi- anity, and islam. if any one of them is true, then do the other two contain “mostly false beliefs”? this is highly unlikely given their common mono- theism and massive shared history. or take hinduism and christianity. if hinduism is true, then is christianity “mostly false”? again, this is doubtful. many hindus even recognize jesus as an avatar of vishnu, a manifestation of the divine. the widespread testimony to experiential encounters with the divine gives us some reason to believe that our orientation to a divine reality may be very deep indeed and very difficult to separate ourselves from or postpone responding to until we get our “uncontroversial” picture of the world sorted out. and, fundamentally, why should we think that our “common inheritance” is secular or not intertwined with a religious ori- entation to the world? for significant numbers of religious practitioners, the world itself is experienced as sacred. schellenberg references the ways in which entrenched social practices have promoted false beliefs (for ex- ample, about the shape of the earth), treated women as inferior to men, and so on. a defender of religious experience need not claim that all historically embedded belief- formation practices are justified, though for the record there is reason to believe that, historically, world religions have promoted the equality of both women and men; and while schellenberg mocks “a medieval flat- earther’s experiences,” it turns out that very few medievalists or large groups of people at any time have believed that the earth is flat. theistic world religions have many built- in checks on ac- cepting religious experiences as authentic, so being open to the trustwor- thiness of ostensible experiences of the divine is not a license to accept an anything- goes policy. t h e g o l d e n c o r d objection from religious diversity although i have sought to reply to the charge that religious beliefs and traditions contain mostly falsehood—if one is true, then the others are mostly false—let us consider one more specific argument from schellen- berg. while i believe that there is vast accord among religions, there are some differences. so, for example, while most forms of buddhism agree with most forms of christianity that greed is bad, compassion is good, and so on, buddhists adopt a no- self theory of the self. that is, they hold that there is no substantial, individual self. this thesis has been advanced by an appeal to experience. when you engage in self- examination or in- trospection, do you see yourself? arguably, you observe feelings, colors, shapes, and so on, but you do not, or so it is argued, actually observe the self. in these circumstances, how should we weigh the buddhist experi- ence with, say, a christian who believes that she is a substantial, indi- vidual self, existing over time? we might be tempted to think that while both cannot be right, both are fully justified in holding their different beliefs. schellenberg does not think so, however. he devises the following thought experiment, in which the religious beliefs and their justification cancel each other out: for who knows what i would think if i could have your experience? a christian might be inclined to say to members of other traditions: “you would understand my reticence to give up my belief if you could only see what i see.” but a better thought here is this: “what if the christian (or hindu or the buddhist . . . ) could see from the inside what all reli- gious experiments have seen, perhaps in sequence, with a clear memory afterward of what she had seen—would her belief be affected then?” pre- sumably the answer is “perhaps yes, perhaps no.” . . . certainly one’s own experience can provide no grounds for going one way or the other on this matter. (that i have a powerful experience apparently of christ may entail, at least for that moment, that i form a religious belief about christ, and this belief may entail the falsity of incompatible beliefs from other traditions; but neither of these things entails that, should i experience the some real appearances world as does a hindu or a buddhist, i would not conclude that their experi- ence was more illuminating and convincing than mine) [emphasis mine]. i don’t find schellenberg’s case convincing. one way to respond to this thought experiment is to point out that both buddhist and christian religious experiences can be veridical. i shall develop this point from the christian perspective of persons being substantial individuals. we can ac- knowledge that if you are looking for a self that appears in your visual or auditory field as an object, then you will not see or hear a self; but if you allow that the self is the one who is seeing and hearing, then your experi- ence of the self is evident and continuous. with pain, for example, i am feeling a state of myself, i am experiencing myself as a substantial real- ity. in this sense, a defender of the substantive view of the self can fully acknowledge the merits of a buddhist’s experience but without thereby holding that the buddhist account covers the self as a whole. the above point about the observability of the self brings up another issue. why aren’t reports of sensing god more prevalent? actually, i be- lieve that they are quite extensive. but one reason why they might be even more extensive than currently recognized is because of the concep- tual frameworks that we employ. i suggested above that one reason why persons might hold that they do not have a substantial self is because, if they had or were such a self, then they would observe it as they would observe an object in a visual field. it may well be that a shift in perspective widens the area. a parallel case may arise concerning religious experience. imagine, for the sake of argument, that christian theism is true, and let us further imagine that you attend a eucharist service. while you are an agnostic, you have a vague sense (perhaps stimulated by a blend of music, readings, and such) that there is “a spirit that impels all thinking things,” along the lines of wordsworth’s “tintern abbey.” now, perhaps this sense is no more than your entertaining a vision of god and your contemplat- ing, “well, maybe life might be like that.” but it might also be (given the truth of christian theism) an actual appearing or an encounter. the felt difference between an appearing and merely contemplating (favor- ably but not fully affirming) may be seen in comparing two experiences involving the bible. in what we might call the scholarly experience, you t h e g o l d e n c o r d may encounter the god of the bible insofar as you entertain (and perhaps critically evaluate) god as a figure or subject in the bible. this may be akin to studying a figure in any novel. but there is a distinctive difference between that and the experience that one is encountering god as a living reality through the bible. the latter may have an evidential value that the first does not have. in the second experience, one senses the presence of a subject as a living reality and not merely the presence of a subject matter upon which one is reflecting. as for the case of someone having “a powerful experience apparently of christ” (as i have had and appear to continue to have), most phi- losophers today tend to think that such experiences need to be assessed in comprehensive terms. my hindu friends do not deny my experience, though rather than recognize christ as the unique incarnation, they see christ as one of many manifestations of the divine. i suggest that if the christian “could see from the inside” what a hindu experiences and vice versa, then there would not be a cancelling out of claims. we would to- gether simply have more to share and compare! as for whether this “inside seeing” brings about a conversion or an attempt to be a hindu- christian will depend on more than “inside seeing.” religious experiences explained through sociology, anthropology, neurology, and psychology in modern thought, a substantial case has been made for the idea that wish fulfillment, guilt, and social training and formation account for re- ported religious experiences. the most recent line of reasoning behind this objection is that human beings have an overactive habit of attribut- ing intentionality, purpose, or meaning to events that lack intentions, purposes, or meanings. it is argued that this tendency is responsible for religious experiences triggered by rites, meditation, and so on. imagine that we have an airtight neurological account that correlates experiences such as wordworth’s, bucke’s, and wheatherhead’s with predictable brain patterns. some real appearances this argument seems to cut both ways. if theism is adopted out of wish fulfillment, so then might naturalism or any number of theories. perhaps social training and formation in nontheistic or aggressively secu- lar cultures explain why some persons in these cultures do not experience the divine. perhaps the theory that other people believe what they wish is because people wish that it were true. maybe we can identify all the neurological events that correlate with thinking that there is no god or doing mathematics. if we do have a natural, “in- built” tendency to at- tribute meaning to events, perhaps this is because there is some meaning or value to being. i suggest that the tendency to experience the divine cannot be swept away by this strategy without threatening our reasoning in many areas that seem vital, such as in ethics. we do seem to have a built- in tendency to avoid suffering and perceive it as bad (at least in our own case), but is this not really evidence that it is bad and only reflects wish fulfillment? a critic may not be at all content with this rejoinder. perhaps the accusation of wish fulfillment cuts both ways. richard dawkins’s charge that religious faith is infantile can be as unhelpful as a theist returning the favor and casting dawkins himself as infantile. but, it may be argued, if one can successfully give a good reason for thinking that people could have apparent experiences of god, even if god does not exist, then the apparent experiences lose their evidential value. imagine, for example, that in a room there is a light on that makes all the objects look yellow. your observation that something is yellow has no evidential value because the objects would appear yellow even if they were, say, white or gray. two points need to be appreciated in reply. first, if you do not know that there is a yellow light that makes all objects appear yellow, then you should trust your observation of yellow objects. similarly, if you don’t know that naturalism is true (or theism false), trusting apparent theistic experiences seems perfectly sensible. second, none of the studies or natu- ralistic projects of explaining religious experience convinces me that we would have the apparent positive experience of the divine if there is no god. this claim would require a detailed argument that goes beyond the scope of this short book. but a broader point can be stated succinctly, t h e g o l d e n c o r d if classical theism is correct: there would be no experience of god un- less god exists, because there would be no cosmos at all if god does not exist. further steps some of the case studies cited in this chapter involve a sense of the di- vine coming upon the subjects (including me) as a dramatic, unexpected external force. but there are also ample cases of when the sense of the divine may be more ordinary and quiet, as i suggested in the example of someone’s simple attendance at a eucharist service, or in the course of studying scripture. there is also room for appreciating how one might develop habits or dispositions to be open to such experiences. as peter donovan writes, a religious believer who looks on the world as a domain in which god may possibly manifest himself (in one way or another) has the potential for a whole range of significant experiences not open to the person with- out such a world- view. he does not just view the world in a religious way. he lives within it, and acts and responds and experiences its events and happenings (including his own feelings and states of mind) with the pos- sibility in his mind that in doing so he may be coming in touch not just with the world and other people in it, but with the activity and manifesta- tions of god. at the risk of employing a rather pedestrian analogy, consider the topic raised in the last chapter about animal minds. imagine that you be- come convinced that some nonhuman animals are conscious, intelligent beings on the basis of various control experiments involving the use of tools, mirror self- recognition, anatomy, and behavior. having come to that conclusion, you interact with such animals (whether as a professional field biologist or as someone who, like myself, takes his dog to pet therapy programs in area hospitals) in a way that will involve a greater receptivity to animal mental life. a similar, perhaps less pickwickian point, can be some real appearances made about working with or raising prelinguistic human children. some philosophers have held that nonlanguage users do not, even cannot, have beliefs. i find this monumentally implausible; if one cannot have beliefs prior to language acquisition, then how could one acquire a language? but compare two philosophical parents, one of whom is convinced that prelinguistic children have no beliefs, while the other is open to the pos- sibility. the latter would, i suggest, have a greater ability and opportunity to apprehend a child’s interior, mental life. something similar may be the case in terms of spirituality and religious experience. an openness to a sense of the divine may increase its likelihood. norman kemp smith concludes an essay defending the in tel li gi bility of experiencing the divine by noting how individual experiences can be bolstered or enlarged through community or involvement in discipline: “divine existence is more than merely credible: it is immediately expe- rienced; and is experienced in increasing degree in proportion as the in- dividual, under this or that of its great traditional forms, is enabled to supplement his initial experiences by others of a more definite character. and in divine existence, as thus revealed, the non- creatureliness, that is, the otherness of god, is fundamental.” furthermore, many of the religious experiences in theistic tradition are not just golden cords leading one to, say, an awareness of god, but they speak also to what might be called a communion between the soul or person and god. r. g. colling- wood emphasizes this outcome, connecting the person with god through prayer: a painter makes his picture perfect by looking back from moment to mo- ment at the vision which he is trying to reproduce. a scientist perfects his theory by testing it at every point by the facts of nature. so the religious life must come back again and again to the contemplation of its ideal in god. but god is a person, not a thing; a mind, not an object. we contemplate objects, but we do not contemplate persons. the attitude of one mind to another is not contemplation but communion; and com- munion with god is prayer. prayer may not be the whole of religion, but it is the touchstone of it. all religion must come to the test of prayer; for in prayer the soul maps out the course it has taken and the journey it has t h e g o l d e n c o r d yet to make, reviewing the past and the future in the light of the presence of god. before moving forward to the ideas of eternity and time, however, we must pause to take on the problem of evil in the course of two chapters. the experience of evil and the possibility or the promise of redemption are key elements in the christian longing for the divine, and thus the next two chapters are essential for the task of this book as a whole. after all, if we are to take experiences seriously, we need to take into account those that seem quite the opposite of augustine and monica’s. consider the following experience that jean- paul sartre records of his narrator in the novel nausea: i looked anxiously around me: the present, nothing but the present. fur- niture light and solid, rooted in its present, a table, a bed, a closet with a mirror—and me. the true nature of the present revealed itself: it was what exists, and all that was not present did not exist. the past did not exist. not at all. not in things, not even in my thoughts. it is true that i had realized a long time ago that mine had escaped me. but until then i believed that it had simply gone out of my range. for me the past was only a pensioning off: it was another way of existing, a state of vacation and inaction; each event, when it had played its part, put itself politely into a box and became an honorary event: we have so much difficulty imaging nothingness. now i knew: things are entirely what they appear to be— and behind them . . . there is nothing. comparing sartre’s and augustine’s visions, like assessing cosmic goods and ills, is akin to judging ordinary perception. in the absence of any knowledge of our solar system, one may perceive the moon to be small. a friend doing some missionary work in africa in was unable to con- vince a tribal gathering that an american astronaut took a twenty- minute walk on the moon; his claim only met with laughter as they explained that it was impossible because the moon was too small. knowledge of perspective and distance helps us adjust our judgments, and something similar is involved in religious experience. if naturalism is true and theism some real appearances false, then ostensible experiences of god turn out to be far smaller or less significant than they appear; if theism is true, however, then the ostensible experience of god may turn out to be the faint glimmer of that which is overwhelming in goodness, power, and knowledge. a still further simi- larity is in play about good and evil. is the evident appearance of evil so massive that it eclipses the possibility of an all- good god? is sartre’s vision or augustine’s vision more disclosive of being (or, in sartre’s case) noth- ing? when sartre writes that “things are entirely what they appear to be,” is he portraying a hard, no- nonsense realism or a truncated view of what may be seen as rich and expansive? c h a p t e r is god mad, bad, and dangerous to know? it is tempting to conclude that if [god] exists, it is the atheists and agnostics that he loves best, among those with any pretensions to education. for they are the ones who have taken him most seriously. —galen strawson during a philosophy conference at macalester college, a young man was presenting a paper on the problem of evil. there was something detached and aloof about the way he set the problem before us: “let us assume, for the sake of argument, that there is a triple- a god.” by this, he explained, he referred to a god that is all- powerful, all- knowing, and all- good. in any event, he set up the problem of evil as “the problem of the poi- soned water.” imagine that a fiend has put poison in a glass of water. an innocent person comes along, drinks the glass of poisoned water, and dies. this is a clear case of the fiend doing a wrong act, and he is fully t h e g o l d e n c o r d responsible for it. but now imagine that there is a bystander who saw everything and had the power to intervene but did not. isn’t that person also responsible for the preventable, wrong death? the bystander is like god, or so the young man argued. is god a bystander? as noted in chapters and , the god of christianity creates and sustains the cosmos; and, if augustine, the cambridge platonists, and auden are correct, then god may even be encountered experientially. the chief dif- ficulty with setting up the problem of evil along the lines of poisoners and bystanders lies in not sufficiently appreciating that god, in christianity, is active both as creator and as a power within the cosmos. so, in taking on board the three as, or os, we cannot view the question as simply as, say, analyzing a crime scene. if one thinks that god’s not preventing an evil event counts as a reason for thinking that there is no god, then one needs to take seriously what may be called the ethics of creation. what do you think are the ethical constraints (if any) that should govern what a good god creates? the question may seem preposterous. are our ethi- cal judgments and rules the sort of standards that can be used to measure which galaxies would be good to create? although the questions are wild, if one is going to think and talk about (as well as love) god as good, even supremely good, we will need to rely on our ordinary moral judgments but try to extend them to cover a truly extraordinary, cosmic scale. in an effort to adapt such a cosmic point of view, i can rephrase the problem of evil along the following lines: is it compatible with god’s goodness for god—as an all- knowing, all- good, all- powerful being—to create and sustain a cosmos that contains profound goods (stable laws of nature), plant and animal life, consciousness, moral experience, and some experiential awareness of god, and yet there is profound suffering and pain brought about by floods and droughts, murder, rape, birth defects, and crippling diseases? there is beauty too, such as in the birth of a child, art works, and romantic love, but there are also miscarriages, cruelty, and mass killing. if there is an all good- god, then all evils are contrary to is god mad, bad, and dangerous to know? god’s will and nature; each murder is a case in which something sacred is destroyed (the victim) and perverted (the murderer misuses his power). god has given freedom to human creatures that can be used horrifically or lovingly in valuable relations of interdependence. he acts in the world to prevent some harm through answers to prayers, but not all prayers are answered. his nature and will are revealed to many creatures, and, if christianity is true, then god has become incarnate as jesus to redeem creation in this life as well as through an afterlife in union with god. in asking this question we build into the inquiry a thesis that goes underappreciated in debates about god and evil: historically, the majority of christian theologians holds that certain events are genuinely evil, are contrary to god’s will and nature, and thus should not occur. such events are not justified or permissible. some christians have held a very strong view of divine providence according to which everything that occurs has a purpose. but the vast preponderance of christian teaching remains clear: murder, rape, soul- destroying illnesses, and other horrors are against god’s will and count as profound wrongs and breakdowns contrary to god’s intended created order. to fill out this vital point, consider the fol- lowing distinction. redemption is not justification when one justifies evil, one typically argues that some end or greater good made the evil necessary. in warfare, if repelling an unjust invading force requires the death of innocent, noncombatant civilians, then such deaths may be justified. or, to take a less controversial case, imagine that the only way to foil and escape from a belligerent assailant is to lie. here, some- thing that is otherwise wrong becomes permissible, maybe even good. (it sounds odd to ever claim that it is good that there is evil, but on a utilitar- ian framework—in which the end may justify the means—this occurs). redemption is different. here, it is always the case that what was wrong ought not to have occurred. so, imagine two people, pat and kris, in what begins as a good relationship. eventually, pat betrays kris, and kris considers severing the relationship. imagine that pat repents, t h e g o l d e n c o r d however, and out of love they reconcile. imagine further that the couple discovers the great good of reconciliatory love and the extraordinary real- ization of the good of being loved by another person under the worst of conditions. isn’t this outcome a greater good than the couple would ever have achieved if there had been no betrayal? in a framework of justification, one might even conclude that betrayal was good, but in a framework of redemption this is not the case. each party has discovered a great, trans- forming good, and yet the betrayal remains unchanged as an evil. the distinction between justification and redemption is important to take se- riously, lest one forget the truly horrific nature of evil as a profound viola- tion of god’s will and nature. i am not suggesting that issues of justification are wholly out of place in addressing the problem of evil. it only needs to be stressed that if god seeks to redeem persons, then the past evil is still not to be seen as itself good or permissible. on some accounts, mercy, whether shown by god or humans, is in tension with justice. that is, cases may arise when a person both deserves and ought to be punished, but a good ruler or mag- istrate may show mercy by reducing the punishment. in the context of the problem of evil, one needs to be open to the possibility that while an all- good god ought to punish the wicked person, god’s goodness may also be compatible with god’s not punishing but, rather, redeeming the wicked. love of god in my epigraph at the beginning of this chapter, i quoted galen straw- son’s comment about atheists and agnostics taking god more seriously than believers. presumably, strawson supposes that if there is a god (with three as), then god is guilty of great cruelties in allowing enormous, un- deserved suffering. an atheist may be said to love the idea of god insofar as an atheist might wish that god did exist, because then there would be no evil at all or no undeserved suffering but only bliss. in a sense, straw- son may be backed up by an observation by erasmus: “he who does not believe god exists is less insulting to his fellow man than he who believes is god mad, bad, and dangerous to know? god is cruel or vain.” but if we shift the ground a bit, we can develop a different response to strawson. imagine two universes exactly like ours in its present state in every way except one. both universes have equal amounts of suffering and plea- sure, struggle and disappointment, happiness and tragedy. in one uni- verse, however, there is a creator- god who is lovingly seeking through prophets, an incarnation, and religious experience to call all people to a life of fulfillment, and this god will indeed offer redemption to everyone in this life or the next. in that universe, men and women die; they are poi- soned or murdered or die naturally, but they are not thereby annihilated. through god’s omnipotent love, they are called from death to life. now, compare that with a universe exactly like ours: the same degrees of suffer- ing, death, happiness, and sorrow. but imagine that in such a universe, there is no all- good, all- knowing, all- powerful god who seeks redemp- tion for the creation. in that universe, death is annihilation. now, two questions: first, which universe do you think contains more good? and second, if one were truly to play out strawson’s schema, do you think a person who truly loves god or the idea of god would prefer the second universe? reflections on the problem of evil are incomplete as long as one ne- glects the question of why evil is a problem. clearly, thinkers from ancient greece onward have wondered why there is suffering and tragedy, and this has been seen as problematic if there is one or more divine realities that may prevent it. but if one denies that there is any divine, good reality, to what extent is evil a problem? for example, the loss of my sister- in- law to cancer is a problem because she was a talented, precious human being who, had she lived, would have continued to flourish and bring joy to others. but if you are, as is strawson, a determinist, there is a sense in which her death was unpreventable (given the laws of nature, antecedent conditions) and not at all in violation of nature or natural law. her pre- mature death was fixed from the big bang billions of years ago. similarly, if strawson is right, all your acts in the future cannot be freely altered by you in a way for which you can take moral responsibility. in this world- view, evil is not a problem insofar as it should not occur given the state of the world, the laws of nature, and so on. t h e g o l d e n c o r d alternatively, if theism in the cambridge platonist tradition is true, then evil is a violation, a preventable sacrilege that, again, should not occur; it is out of union with the will and nature of the all- good creator. our apprehension or even perception that evil is a problem can, in some respects, be seen as a golden cord or clue that we are oriented toward some transcendent good. this is not a matter of mere wish fulfillment: if we wish that life were better than it appears, then it is better than it appears. still, the fact that we do rebel against the state of the world—its suffering and its unmet needs—can be a sign that we are so made as to desire that which not only is truly fulfilling but also is a transcendent good. consider now four major objections or sides to the problem of evil: the problem of freedom; the problem of innocent victims; the hiddenness of god objection; and the vices of god objection. the problem of freedom in an important work, on what matters, derek parfit argues that none of us have a morally significant kind of freedom (sometimes called lib- ertarian freedom). in essence, parfit claims that for us to be genuinely responsible for doing x rather than not- x, we would have to be able to create ourselves. any decision that we might make, however, stems from our character. therefore, it is impossible for someone to (as it were) step away from herself and shape her own character, because any decision to shape her character will reflect her character. those who defend lib er- tarian freedom, in contrast, claim that persons act on the basis of the reasons they choose to adopt, and that this is a genuinely free act (the person could have done otherwise). parfit argues that such an appeal to reason is unintelligible. when someone acts for some reason, however, we can ask why this person acted for this reason. in some cases, the answer is given by some further reason. my reason for telling some lie, for example, may have been to conceal my identity, and my reason for concealing my identity may have been to avoid being accused of some crime. but we shall soon reach the is god mad, bad, and dangerous to know? beginning of any such chain of motivating reasons. my ultimate reasons for telling my lie may have been to avoid being punished for my crime. when we reach someone’s ultimate reason for acting in some way, we can ask why this person acted for this reason, rather than acting in some other way for some other reason. if i had a self- interested reason to try to avoid being punished, and a moral reason not to tell this lie, why did one of these reasons weigh more heavily with me, so that i chose to act as i did? this event did not occur for some further motivating reason. so the suggested . . . alternative here [this event was either fully caused or partly random] disappears. libertarians who are incompatabilists, such as peter van inwagen, rod- erick chisholm, stewart goetz, richard purtill, daniel robinson, john foster, and (to appeal to a favorite philosopher of mine) c. a. campbell, claim that persons have a basic—that is, not further explicable—power to act and the power to do otherwise than they act, given all antecedent and contemporary events and the prevailing laws of nature. campbell concedes that from the outside, from a third- person or external point of view, the case for libertarian agency or even the nature of such agency seem mysterious. it is only from the first- person point of view that “agen- tive power” (a term that robinson deploys to describe libertarian power, or the morally significant power of agents) makes sense. according to these libertarian philosophers, the phenomenology of what it is to be an agent discloses or brings to light our ostensible power to act and to do other than what we do. how do we know that such a positive account of our free action is wrong? in the passage from parfit cited above, do we have reason to be- lieve that there cannot be a basic agentive power? imagine that someone decides to lie. might it be that the reasons for lying were her reasons because she made a decision to act that way when she could have done otherwise? as campbell notes, the thesis of libertarian agency is that per- sons do have a basic power, a power that is not determined by some other force. “such critics [as parfit] apparently fail to see that if the libertarian could say why [give a deterministic account of a choice], he would already have given up his thesis.” t h e g o l d e n c o r d parfit, however, claims to have a decisive argument against this stance: “when other writers try to describe some third alternative to some act’s being fully caused, or partly random, it is a decisive objection to such claims that they are incomprehensible.” interesting. i can accept that parfit himself does not comprehend the concept of free agency as defended by chisholm, van inwagen, robinson, and so on, but why does that give me or others reason to believe that chisholm and company do not know what they are talking about, and that the concept of agentive power is incomprehensible? parfit, i take it, does not think that the failure of other philosophers to comprehend his notion of reason is a decisive reason against his position. and because he believes that normative reasons are ir- reducible, parfit should not rule out in principle the idea that there might be agentive powers, which are not reducible to non- agentive powers. a thought experiment may be helpful here. consider the following story of mine, which tries to make freedom—the kind of freedom parfit finds incomprehensible—an evident, everyday reality. maria had just given a talk against the coherence of libertarian agency. she felt good; in fact, she felt very cool as she had composed her paper while working out at a gym and she had lost that weight that was bothering her. why, she thought to herself, even arthur had taken notice. arthur? why, yes, he was a friend and was married. but hadn’t he been a bit flirty when he asked her to come by the hotel room for a drink after her talk? why not? what could go wrong? well, she thought, maybe i shouldn’t. but her own husband had an affair three years ago, and she had forgiven him. wouldn’t she be forgiven? maria went to the lobby and called the desk: “please put me through to dr. arthur taylor.” her heart was rac- ing. should she say: “sorry, arthur, i am exhausted, and need to call it an early night.” or: “guess who gave the dewey lecture and got a stand- ing ovation? you’re talking to the lady right now! let’s raise a glass, and maybe more. what’s your room number?” she still had no idea what to do when arthur answered: “disappointing news, darling, the reception for the dewey lecturer only includes one person. but he is in room and is most excited.” “sorry, arthur!” she found herself saying, “sorry to be a pill but i have to take an early flight”—which was a lie—and then she is god mad, bad, and dangerous to know? thought she better make the lie bigger. “i got a call from jim and our old- est is sick.” she paused: am i going to lie out of self- interest or be honest? honesty. she could walk away from it and stick to the lie. she decided in- stead: “actually, arthur, to be honest, i think if i came to the room, things would get way out of hand.” “what are you talking about?” “i’m pretty pathetic when it comes to self- restraint. let’s meet with mark and jilly over breakfast at tomorrow morning instead.” “you got it.” maria closed the line. she thought: i made the right decision; if i had gone to see him, there might have been no turning back. or did she? she might—right now—be having the time of her life. back in her room, she went to the mini- bar. after a second gin and tonic, she wondered about the feelings she had during the conversation. you know, she said to herself almost out loud, it really felt like things could have gone either way. i could have gone up there, but i decided to resist it. did i make the right decision? am i right in my dewey lecture that libertarian freedom is incoherent? she was asleep soon after that. the breakfast was amusing but quite unsexy. by the time she got back to her office on monday, maria was on the phone: “hannah,” she called her good friend hannah dexter. “how do i retract my dewey lecture? either i need to withdraw it or add a footnote that i now think libertarian agency is coherent and, well, actually, i think at least some of us have it.” “what the hell are you talking about?” “um, let’s just say something happened at the convention that made me change my mind.” hannah, sighed: “crap, maria, you go to a convention and now you’re in bed with libertarianism.” “close, but i did not sleep with liber- tarianism.” maria smiled when she realized that arthur was a libertarian, being a former graduate student of peter van inwagen. the story may seem banal to some readers, but it in fact addresses the bewilderment of a highly prominent professor. although i do not claim to know that libertarian concepts of agency are coherent and plausible, any number of examples from everyday life suggest that it is. as c. a. campbell puts it, libertarian agency seems unintelligible only if we rule out first- person phenomenology: “those who find the libertarian doctrine of the self ’s causality in our decisions inherently unintelligible find it so simply because they restrict themselves, quite arbitrarily, to an inadequate t h e g o l d e n c o r d standpoint: a standpoint from which, indeed, a genuinely creative ac- tivity, if it existed, never could be apprehended.” consider an objection: isn’t the above story a tad fatuous? in reply, consider another story: “james was exhausted. squaring a circle while going backwards in time is tough work. he had earlier violated the prin- ciple of the indiscernibility of identicals and finally found a green idea that sleeps furiously.” but even highly detailed, gripping stories about squaring a circle, told at the level of detail and emotion of, say, george eliot’s middlemarch, cannot make coherent the claim that you can have an object that both has and lacks four right angles at the same time. in contrast, if there is anything to the libertarian account of free agency, especially along the lines of campbell, then there will be something it is like to exercise such agency. the libertarian can call on coherent stories as examples, even if his philosophical account of free agency may be false. when a philosopher denies this freedom, a defender has an opportunity to try to bring the experience into focus. the art of pursuing virtue through grace and freedom has a rich role in christian theism. there are significant differences among theologians concerning the scope of freedom. martin luther, for example, stresses divine grace, whereas the cambridge platonists stress freedom and di- vine grace. but those emphasizing human freedom did not use the image of causa sui (being self- caused); the closest they came is a very different image, that of birth. gregory of nyssa was a firm opponent of slavery and the idea that a person is fully owned by his society, family, or emperor. “we are in some manner our own parents,” writes gregory, “giving birth to ourselves by our own free choice in accordance with whatever we wish to be.” far from involving a logical contradiction, i suggest, we can and do reshape ourselves when we choose between possible futures. we see “the way you are” as not in itself a fixed, settled matter in an instant t. in a sense, it would be more accurate to claim that “the way you are” includes many possibilities, many different ways you may come to be. the fact that we might elect to be different than we are was used by the cambridge platonist peter sterry to argue for a greater receptivity toward others. he reasoned, “had my education, my acquaintance, the several circumstances and concurrences been the same to me, as to this is god mad, bad, and dangerous to know? person from whom i now most of all dissent, that which is now his sense and state might have been mine.” sterry uses this observation to bolster allegiance to the second commandment, loving one’s neighbor as one- self: “have the same just, equal, tender respects and thoughts with the same allowances of another, which you require from him to yourself.” one further point about freedom is worth making. christian theists have traditionally valorized the concept of a creature’s freedom as a key link with the divine: being free is part of what makes us in the image of god. but the stress on freedom is usually accompanied by a stress on the good of interdependence. in her dialogue, catherine of siena records this revelation from god: i [god] have distributed [all virtues and graces] in such a way that no one has all of them. thus have i given you reason—necessity in fact—to practice mutual charity. for i could well have supplied each of you with all your needs, both spiritual and material. but i wanted to make you depen- dent on one another so that each of you would be my minister, dispensing the graces and gifts you have received from me. so whether you will it or not, you cannot escape the exercise of charity! yet, unless you do it for love of me, it is worth nothing to you in the realm of grace. . . . in loving me you will realize love for your neighbors, and if you love your neighbors you have kept the law. if saint catherine is right, then interdependence alone is not itself good, but it is a great good when informed by gracious love. the problem of innocent victims even if we can defend the claim that we can be free and responsible for our characters, it seems that many persons and nonhuman animals suffer, and not for any fault of their own. the problem of animal suffering is particularly difficult to assess because we do not know its scope. indeed, in terms of animal life, suffering seems built into the process of evolu- tion. while historically there has been significant debate over whether t h e g o l d e n c o r d evolution would be worthy of an all- good god (would an all- good god exercise a series of special creations, much as we find in genesis ?), recent ecology seems to understand animal predation in the wild as something good, or at least not something that we should seek to abolish or police. overall, the idea of the natural world without animal suffering or preda- tion seems problematic. holmes rolston iii takes up the possibility of a natural world with less suffering: could, should god have created a world with only flora, no fauna? pos- sibly. possibly not, since in a world in which things are assembled some- thing has to disassemble them for recycling. in any case, we do not think that a mere floral world would be of more value than a world with fauna also. in a mere floral world, there would be no one to think. . . . could we have had only plant- eating fauna, only grazers, no predators? possibly, though probably we never did, since predation preceded photosynthesis. even grazers are predators of a kind, though what they eat does not suf- fer. again, an earth with only herbivores and no omnivores or carnivores would be impoverished . . . no horns, no fleet- tuned eyesight and hearing, no quick neural capacity, no advanced brains. we humans stand in this tradition, as our ancestors were hunters. . . . life preys on life; all advanced life requires food pyramids, eating and being eaten. humans are degenerate in the sense that we cannot synthe- size all that we need, compared with, say, the flora, which are autotrophs. but in such degeneracy lies the possibility of advancement. if rolston is right, predation and the evolving of plant and animal life are ecologically interwoven and transformative. an alternative biology with- out suffering would be unrecognizable to us, perhaps requiring a special creation in which god creates only herbivores fully formed under ideal conditions. peter van inwagen observes that intelligent life is almost unimagi- nable without extensive natural evolutionary suffering: only in a universe very much like ours could intelligent life, or even sen- tient life, develop by the nonmiraculous operation of the laws of nature. is god mad, bad, and dangerous to know? and the natural evolution of higher sentient life in a universe like ours essentially involves suffering, or there is every reason to believe it does. the mechanisms underlying biological evolution may be just what most biolo- gists seem to suppose—the production of new genes by random mutation and the culling of gene pools by environmental selection pressure—or they may be more subtle. but no one, i believe would take seriously the idea that conscious animals, animals conscious as a dog is conscious, could evolve naturally without hundreds of millions of years of ancestral suffer- ing. pain is an indispensable component of the evolutionary process after organisms have reached a certain stage of complexity. given the overall good of the natural world, i suggest that such suffering does not seem incompatible with god’s goodness. (one’s judgment about suffering in nature will, of course, vary to the extent that one recognizes morally relevant states of awareness or pain and suffering among non- human animals.) some innocent suffering might be prevented by divine intervention, but van inwagen and others have argued that multiple divine miracles would destabilize the natural world. van inwagen asks us to imagine a miracle- based world: god, by means of a continuous series of ubiquitous miracles, causes a planet inhabited by the same animal life as the actual earth to be a he- donic utopia. on this planet, fawns are (like shadrach, meshach, and abednego) saved by angels when they are in danger of being burnt alive. harmful parasites and microorganisms suffer immediate supernatural dis- solution if they enter a higher animal’s body. lambs are miraculously hid- den from lions, and the lions are compensated for the resulting restriction on their diets by physically impossible falls of high- protein manna. on this planet, either god created every species by a separate miracle, or else, although all living things evolved from a common ancestor, a hedonic utopia has existed at every stage of the evolutionary process. while van inwagen makes a good point against supposing that god should sustain a miracle- based world, i suggest that theists need to appeal t h e g o l d e n c o r d to greater goods and powers that will ultimately address the problem of innocent suffering. marilyn adams thinks that god has the power and goodness to defeat the evils of the world by way of a relationship between creatures and creator, begun in this life and continued in the next: the worst evils demand to be defeated by the best goods. horrendous evils can be overcome only by the goodness of god. relative to human nature, participation in horrendous evils and loving intimacy with god are alike disproportionate: for the former threatens to engulf the good in an indi- vidual human life with evil, while the latter guarantees the reverse engulf- ment of evil by good. relative to one another, there is also disproportion, because the good that god is, and intimate relationship with him, is in- commensurate with created goods and evils alike. because intimacy with god so outscales relations (good or bad) with any creatures, integration into the human person’s relationship with god confers significant mean- ing and positive value even on horrendous suffering. this result coheres with basic christian intuition: that the powers of darkness are stronger than humans, but they are no match for god. adams further contends that assessing the problem of evil using only secular values (for example, pleasure is good, suffering is bad) obscures the broader claims about the christian vision of god. if the god of christi- anity exists, then in addition to secular values there may be superabun- dant values of incomparably great depth and power that can engulf and transform those damaged by evil. only if we consider the possibility that there is an afterlife in which the innocent are healed, the lost found, and evil defeated, as suggested by adams, can a theist fully reply to the skeptic. the point is not just the mere positing of an afterlife, but entertaining the possibility of a broader arena with values that do not merely offset the ills of suffering but that (as it were) out- scale the ills. this is also john hick’s position. he firmly upholds the goodness of god: what does that ultimate context of divine purpose and activity mean for auschwitz and belsen and the other camps in which, between and , between four and six million jewish men, women, and children were is god mad, bad, and dangerous to know? deliberately and scientifically murdered? was this in any sense willed by god? the answer is obviously no. these events were utterly evil, wicked, devilish and, so far as the human mind can reach, unforgivable; they are wrongs that can never be righted, horrors which will disfigure the universe to the end of time, and in relation to which no condemnation can be strong enough, no revulsion adequate. it would have been better—much, much better—if they had never happened. most certainly god did not want those who committed these fearful crimes against humanity to act as they did. his purpose for the world was retarded by them and the power of evil within it increased. undoubtedly he saw with anger and grief the suffer- ings so willfully inflicted upon the people of his ancient choice, through whom his messiah had come into the world. and yet hick insists that this vision is only possible in the context of an afterlife: “if this life, so creative for some but so destructive for many others, is all, then despair at the human situation as a whole is appropri- ate. indeed if an all- powerful god has deliberately created a situation in which this present life, with all its horrors, is the totality of human exis- tence, we should hate and revile that god’s callous disregard for his/her helpless creatures.” for hick and others, it is not good that there is evil. and if there is only this life, god is not good. d. cohn- sherbok agrees. he writes from a jewish perspective: the essence of the jewish understanding of god is that he loves his cho- sen people. if death means extinction, there is no way to make sense of the claim that he loves and cherishes all those who died in the concentration camps—suffering and death would ultimately triumph over each of those who perished. but if there is eternal life in a world to come, then there is hope that the righteous will share in a divine life. moreover the divine at- tribute of justice demands that the righteous of israel who met their death as innocent victims of the nazis will reap an everlasting reward. here then is an answer to the religious perplexities of the holocaust. some jewish theologians see the holocaust as a definitive disproof of theism or at least the undermining of a theism that regards god as t h e g o l d e n c o r d a provident ruler of history. others hold that only a god of cosmic power can redeem those who died in the nazi- led genocide. another factor that needs to be considered is the conviction that god suffers in and with creation. the belief that god suffers or grieves over the evils of the cosmos is called passibilism. (the denial that god suffers is called impassibilism.) alvin plantinga advances a passibilist understanding of god: as the christian sees things, god does not stand idly by, coolly observ- ing the suffering of his creatures. he enters into and shares our suffer- ing. he endures the anguish of seeing his son, the second person of the trinity, consigned to the bitter, cruel and shameful death on the cross. some theologians claim that god cannot suffer. i believe they are wrong. god’s capacity for suffering, i believe, is proportional to his greatness; it exceeds our capacity for suffering in the same measure as his capacity for knowledge exceeds ours. christ was prepared to endure the agonies of hell itself; and god, the lord of the universe, was prepared to endure the suf- fering consequent upon his son’s humiliation and death. he was prepared to accept this suffering in order to overcome sin, and death, and the evils that afflict our world, and to confer on us a life more glorious than we can imagine. such an understanding of god is very far from the bystander we imagined at the beginning of this chapter. as richard swinburne observes, under- standing god as one who shares the burden of overcoming evil challenges the idea of god as a mere observer: a theodicist [one who argues that god is just, notwithstanding worldly evil] is in a better position to defend a theodicy such as i have outlined if he is prepared also to make the further additional claim—that god know- ing the worthwhileness of the conquest of evil and the perfecting of the universe by men, shared with them this task by subjecting himself as man to the evil in the world. a creator is more justified in creating or permit- ting evils to be overcome by his creatures if he is prepared to share with them the burden of the suffering and effort. is god mad, bad, and dangerous to know? the conviction that god suffers with creation should prompt an addition to the question i formulated earlier in this chapter on the compatibility of evil with god’s goodness. for god, all the evils of the creation are not only against his will and nature, they are the object of god’s suffering and hatred: god hates evil. i conclude this section with a comment on dostoyevsky. in the brothers karamazov, which contains one of the most powerful literary treatments of the problem of evil, dostoyevsky points the way to address- ing evil in the light of god’s proximate love for the world. father zossima reports: “much on earth is hidden from us, but to make up for that we have been given a precious mystic sense of our living bond with the other world, with the higher heavenly world, and the roots of our thoughts are not here but in other worlds. this vision is upheld by many mystics, phi- losophers, and theologians in the theistic traditions and will be explored in the last three chapters. the hiddenness of god objection john schellenberg has argued in multiple places that if the god of chris- tianity exists, then god would be more evident. in particular, there would be no person seeking a rich relationship with god who would not find it. because god is not evident to those who seek him, we have reason to believe that there is no god. schellenberg advances his thesis with two parables. here is the first: suppose your daughter, whom you dearly love, is in the grip of an er- roneous picture as to what sort of person you are and what you intend in relation to her. no matter what you do in seeking to facilitate real con- tact . . . the response is only fresh resistance. . . . now suppose that some way of instantaneously transforming her perspective is made available to you: if you press this button she will see you for who you really are and the snagged and tangled and distorted beliefs will rearrange themselves into a clear perception of the truth. . . . but suppose also that in facilitating a correct picture of who you are and what you intend in this way, you will t h e g o l d e n c o r d render it inevitable that your daughter make at least an initial choice in favor of a meaningful relationship with you—that is, her choice to do so will not be free in the sense we have been emphasizing. . . . surely you will still do it, for you see that a free choice, yea or nay, . . . isn’t threatened thereby . . . (wouldn’t any parent make the correct view available, even if the choice facing the child is then so obvious and attractive as not to be free, rather than having the child persist forever in her misunderstanding- based free choice? and what would be chosen by a perfectly loving god, the one who according to spiritual geniuses like jesus of nazareth never ceases to seek the lost sheep and to reveal to it a shepherd?) and here is schellenberg’s second parable: you’re a child playing hide and seek with your mother in the woods in back of your house. you’ve been crouching for some time now behind a large oak tree, quite a fine hiding place but not undiscoverable—certainly not for someone as clever as your mother. however, she does not appear. the sun is setting and it will soon be bedtime, but still no mother. not only isn’t she finding you, but, more disconcerting, you can’t hear her anywhere: she’s not . . . talking to you meanwhile as mothers playing this game usually do. now imagine that you start calling for your mother. coming out from behind the tree, you call out her name, over and over again. but no answer. . . . so you go back to calling and looking everywhere: through the woods, in the house, down the road. several hours pass and you are growing hoarse from calling. is she anywhere around? would your mother—loving and responsible parent that she is—fail to answer if she were around? these arresting thought experiments are open to challenge. in the first one, schellenberg gives little or no attention to the possible goods involved in a person’s life independent of the mother/parent figure and, by analogy, of god. in the first experiment, imagine that your child falsely believes that you are a gun- running, anti- environmental industrialist who is god mad, bad, and dangerous to know? is cruel to your labor force. imagine further, however, that in rebellion against you, your child effectively undermines arms manufacturers and heads up a leading pro- environmental business group dedicated to fair labor laws. still further, imagine that you have an overwhelming person- ality, and, if you could push the button, she would lose some of her pas- sion and sink into a timid, more tepid pursuit of the good. would you push the button then? i would not. as for the parable of hide and seek, there is again no attention to the goods of growing up as one’s own person. schellenberg seems to sup- pose that the mother should be making herself known constantly. the analogy with god seems to be this: a good god, like a good mother, would not allow for there to be any time when god is not clearly evident to creatures. this seems, in my view, too strong a thesis. most christian theists believe that ultimately all persons will know of god either in this life or the next, so in the analogy we would have to imagine the mother eventually reappearing. but to expect the mother or god to be continu- ously evident seems overwhelming and does not allow for much human independence. alan padgett comments: i find [schellenberg’s] conception of the love of god too narrowly pater- nal. schellenberg’s understanding of god is controlling, masculine and patronizing. god will ensure belief for his creatures because, after all, he knows best. a more rich and adequate understanding of god avoids the narrow “father- child” model for one of two lovers, a model found in scripture, mystics, and some philosophers (hegel, buber, levinas). god creates the world as other to himself/herself, to approach the world as a lover. the love of god, on this model, implies the occurrence of rational non- belief. for the lover does not wish to impinge upon the freedom of the beloved to reject the advances of the lover; the lover wishes the be- loved to be both fully mature, not always pressed against her or his long- term choices and character. thus, schellenberg’s argument, he concludes, does not convince those with a more adult- friendly model of divine- human relationships. t h e g o l d e n c o r d the vices of god consider a more recent version of the problem of evil, as advanced by the new atheists. richard dawkins criticizes theism based on the portrayal of god in the bible: the god of the old testament is arguably the most unpleasant character in all fiction; jealous and proud of it; a petty, unjust, unforgiving control- freak; a vindictive, bloodthirsty ethnic cleanser; a misogynistic, homopho- bic racist, infanticidal, genocidal, filicidal, pestilential, megalomaniacal, sadomasochistic, capriciously malevolent bully. . . . the oldest of the three abrahamic religions, and the clear ancestor of the other two, is judaism: originally a tribal cult of a single fiercely unpleasant god, morbidly ob- sessed with sexual restrictions, with the smell of charred flesh, with his own superiority over rival gods and with the exclusiveness of his chosen desert tribe. dawkins’s portrait requires a lengthy reply, but here i shall focus on his charge that the god of the old testament is vain and jealous. if we think only of earthly rulers or human beings, the desire to be worshiped is the height of vanity. and for an earthly ruler to be jealous of any other ruler, his desire for our complete fealty seems also to be a matter of megalomania. but if we take seriously the biblical and subse- quent theological identification by the christian platonists of god and goodness, matters change. if god is essentially good and the goods of the cosmos reflect god’s goodness, then to worship god is to take delight in and respond in reverence and awe to goodness itself. worship is not, then, paying compliments to a massive ego, but reverencing the goodness that makes created goods possible. as for jealousy, god is depicted as jealous in the bible. but is this always a vice? imagine, again, that god is good and a relationship with god is itself good. what would be amiss if, say, a creature’s desire for self- destruction aroused god to call this person back to a good life of har- mony with god and this calling was out of jealousy? assuming god to be the creator of all, this would not be akin to a human being’s. but even if is god mad, bad, and dangerous to know? we used human jealousy as an analogy or image of god’s character, would this be a matter of vice? imagine a healthy relationship between parents and a child until the child goes to college and becomes infatuated with an alcoholic, drug- pushing, pornography- watching, narcissistic philosophy professor whom the child calls “daddy.” wouldn’t the parents properly feel jealous and angry in response? the old testament portrait of a jeal- ous god can be part of the biblical injunction to live fully and forsake violence: “choose life in order that you may live” (deut. : ). françois fénelon explicitly praised god’s jealousy as a manifestation of the purity of divine love: “nothing is so jealous, so severe, and so sensitive as this [divine] principle of pure love.” dawkins’s failure to recognize the centrality of goodness in the chris- tian concept of god is made clear in his book the god delusion. he defines what he calls “the god hypothesis”: “there exists a superhuman, supernatural intelligence who deliberately designed and created the uni- verse and everything in it, including us. . . . goodness is not part of the definition of the god hypothesis, merely a desirable add- on.” but in the christian platonic tradition, goodness is the key reference point, the essential mark of divinity, and no mere “add- on” or afterthought. and this is also central to judaism. the old testament offers a progressive or evolving portrait of god, beginning with a divine revelation to a nomadic “desert tribe” and then reaching out to the breathtaking dimensions of the great hebrew prophets isaiah and jeremiah with their universal teachings of peace and justice. the key to answering dawkins lies, in part, in taking seriously the theistic framework in which goodness is the central nature of god. where do we go from here? some of the treatments of the problem of evil stress the limitations of human resources to assess “the ethics of creation.” what if, after sustained reflection, one does not see the point of creation; does it follow that it is pointless? a number of philosophers, called skeptical theists, challenge such an inference. swinburne observes: t h e g o l d e n c o r d note that the principle is so phrased that how things seem positively to be is evidence of how they are, but how things seem not to be is not such evidence. if it seems to me there is present a table in the room, or a statue in the garden, then probably there is. but if it seems to me that there is no table in the room, then that is the only reason for supposing that there is not, if there are good grounds for supposing that i have looked everywhere in the room, and . . . would have seen one if there was one there. most theistic approaches to the problem of evil invite the long view. hick is explicit on this point in the following passage, in which he con- trasts “the great religions” with naturalism: for quite apart from the sometimes tragic brevity of so many lives, even those who have lived the longest can seldom be said to have arrived, before they die, at a fulfillment of the human potential. we human beings are for so much of the time selfish, narrow- minded, emotionally impoverished, unconcerned about others, often vicious and cruel. but according to the great religions there are wonderfully better possibilities concealed within us. we see the amazing extent of the human potential in the great indi- viduals, the mahatmas or saints, the moral and spiritual leaders and inspir- ers, and the creative artists of all kinds within every culture. we see aspects of it in innumerable more ordinary, but in some ways extraordinary, men and women whom we encounter in everyday life. we see around us the different levels that the human spirit has reached and we know, from our own self- knowledge and observation and reading, that the generality of us have a very long way to go before we can be said to have become fully human. but if the naturalistic picture is correct, this can never happen. for according to naturalism, the evil that has afflicted so much of human life is final and irrevocable as the victims have ceased to exist. hick goes so far as to embrace a form of universalism in which all persons will be saved: “the least that we must say, surely, is that god will never cease to desire and actively to work for the salvation of each created per- son. he will never abandon any as irredeemably evil. however long an is god mad, bad, and dangerous to know? individual may reject his maker, salvation will remain an open possibility to which god is ever trying to draw him.” while not a universalist, keith ward holds a form of christian the- ism according to which all creation will be transformed. here is his poi- gnant challenge to despair as well as a statement of christian faith: one must remember that the christian belief is that there is an existence after earthly life which is so glorious that it makes earthly suffering pale in comparison; and that such eternal life is internally related to the acts and sufferings of worldly life, so that they contribute to, and are essential parts of, the sorts of glory which is to come. the christian paradigm here is the resurrected body of jesus, which is glorious beyond description, but which still bears the wounds of the cross. so the sufferings of this life are not just obliterated; they are transfigured by joy, but always remain as contributory factors to make us the sort of individual beings we are eternally. this must be true for the whole of creation, insofar as it has sentience at all. if there is any sentient being which suffers pain, that being—whatever it is and however it is manifested—must find that pain transfigured by a greater joy. i am quite agnostic as to how this is to happen; but that it must be asserted to be true follows from the doctrine that god is love, and would not therefore create any being whose sole destiny was to suffer pain. this is a sweeping, serious vision of the defeat of suffering and evil. if ward is right, then hemingway’s dictum cited in the introduction may be reversed: madame, the best and truest story of creation, if continued long enough, ends in fullness of life. but let us get back to strawson: is it an insult to god to believe or even to hope for this outcome? let us consider in the next chapter how there might be a redemptive transformation. c h a p t e r redemption and time god has also set eternity in their heart. —eccles. : i seek then to hear the voice which the dead are to hear, and by which, having once heard, they shall live. —bernard of clairvaux i know some people who claim that they have no regrets in life at all. and nietzsche has often been interpreted as claiming that redemption is achieved when a person wills (or accepts) his life just as it is (or has been). this idea is utterly foreign to me. while i do not spend ages in deep, stressful, agonizing regret, nevertheless, if i could turn back time, i would certainly change some things! these feelings are hardly unique. some of the most profound expressions of regret take the form of someone claim- ing that if they could change the past, they would. in the last chapter we addressed the general problem of evil. now we need to look at the key to the christian vision of overcoming evil, which t h e g o l d e n c o r d involves the transformation of evildoers into persons who are redeemed, and the healing of damaged persons (either victims or agents) into a radi- cally transformed union with god. this transition or radical shift raises questions about time and sequence. unfortunately, from my point of view, the transition does not involve changing the past, but it does involve moving through and beyond the past. the stages of redemption christian philosophers have, in general, been in broad agreement about many of the stages involved in redemption. let’s return to pat and kris’s relationship with each other. pat needs to confess the betrayal, show re- morse, and ask kris for forgiveness. on kris’s side, most christian ethi- cists think that eventually kris should forgive pat and should welcome the restoration of the relationship. the “should” here is customarily treated not as a moral duty but as a fitting response. this preserves the idea that forgiveness is a gift, rather than a matter of contractual duty or something that can be coerced. now let’s focus briefly on forgiveness and punish- ment, and then move to a christian account of redemption that enables there to be a union (atonement or at- one- ment) with god. the standard definition of forgiveness is that one person forgives an- other when she either repudiates or moderates her resentment of someone who, she believes, has committed a wrong against her. if she claims to forgive a wrongdoer but has no less resentment toward him, there has been no genuine forgiveness. i am uneasy about whether this analysis cuts to the core of forgive- ness. couldn’t someone forgive someone else and lack any resentment whatsoever? we may still want to say that the forgiver has a right to feel resentment, but perhaps she is incapable of doing so. also, my reserva- tion about the standard model stems, in part, from an uneasiness about “resentment” itself. goethe defined it as impotent hatred, and, perhaps because of this, he recommended that we should not hate what we can- not destroy. resentment seems to me to be a reactive mood: the resenter is brooding or smoldering. in any case, i offer an alternative. redemption and time when, say, kris forgives pat, then kris also ceases to blame pat for the wrong and does not let it stand in the way of restoring their relation- ship. but i propose that if i claim to truly forgive you for some wrong but continue to blame you for it (say, sending you text messages like “you were wrong”), then the forgiveness has yet to take place. in this relational thesis, one person forgives another person for a wrong act when she ceases to blame the other person for the act, and when she deliberately sets the act to one side in the hope for a future relationship. consider an objection: imagine that pat was unbearably cruel to kris and remains unrepentant. couldn’t kris still forgive pat, even though kris has no intention of having any positive relationship with pat? i am in- clined to think that this may involve genuine forgiveness on kris’s part, but it is incomplete or tarnished because of pat’s failure to repent. in any case, i offer you the relational thesis for your own reflection and further inquiry. arguably, it is an ideal account, for in the real world we might genuinely forgive someone for some wrong, but either we or they may be so damaged that any future relationship would be more damaging rather than healing. a few words need to be said on the notion of punishment before heading deeper into matters of redemption. there are abundant theories of when or if punishment is proper, how degrees of punishment should be determined, and who the proper agent(s) are who may inflict it. leav- ing aside a host of issues, consider only two points. first, it is plausible to believe that most wrongdoing involves a person doing whatever he pleases despite a known moral prohibition. the wrongdoer may not have enjoyed the act or felt pleasure, but there remains the fact that he put whatever pleased him (or whatever he preferred) first. punishment may be seen in such a case as actually or symbolically removing the pleasure. punishment may be seen as a way of (as it were) wiping the smile off the face of the wrongdoer. in the course of punishment, a wrongdoer is not allowed to relish past stolen pleasures or to extract enjoyment from having done wrong in the past—or at least pressure is exerted to discourage him from doing so. a second aspect of punishment is worth noting. we usually restrict the term “punishment” for juridical, institutional contexts and only use t h e g o l d e n c o r d it metaphorically or poetically when referring to noninstitutional events, such as “the storm punished the ship,” or “he got what he deserved” when, for example, a murderer is accidentally run over by a car. but in the he- brew bible’s old testament, punishment can come by way of natural events (a flood) or by way of agents (an invading army) who have no concept of punishment. this aspect becomes relevant below. two christian models of redemption the context and challenge of reconciliation become enlarged when con- sidering redemption and god. according to one popular understanding of redemption, long associated with anselm of canterbury, when persons do wrong or evil or sin, they not only wrong a fellow creature and them- selves but they also wrong god, for god is the very source of goodness and, as the creator of all, harming the creation counts as a violation of god’s will and nature. thus, such persons are deserving of punishment. in the new testament the terms are severe: the wages of sin is death (rom. : ). in mercy, god becomes incarnate as jesus christ, who lives a flawless life, shows us the ways of god, and then, in his passion and death, bears our sins. this suffering involves a vicarious death (dying for someone else) and a substitution (an innocent person standing in for the guilty one). there is great scriptural support for this understanding of redemption. jesus is described as sinless and yet bearing the sins of the people ( cor. : ; john : ). this model—sometimes called the anselmian or juridical model— may seem counterintuitive: how can an innocent person be punished for the sake of a guilty one and the innocent person’s death remove the right- ful punishment for the guilty? we can, however, make some sense of how an innocent person may pay a debt or fine for another innocent person. the idea of an innocent person substituting himself for another is given a plausible shape, for example, in charles dickens’s a tale of two cities. i believe the substitutionary model is coherent and profound, although here i want to explore an alternative model that reconceives what it was for jesus to bear sins of others and that gives a greater role to christ’s redemption and time death and resurrection in redemption, rather than treating christ’s death as the central, controlling instrument of redemption. this alternative is the christus victor model, in which redemption involves christ’s victory over death. on this view, humanity sins; and, in addition to human persons needing to be reconciled with one another, they need to be reconciled with god. the problem, though, is with time and power. once you have harmed someone, you simply cannot go back and reverse the harm, as in the wrongful killing of a person. but even in less dramatic cases, restitution is difficult. if, as a college professor i break the eleventh commandment (thou shalt not be boring), i can never give my students back the fifty- five minutes of class time that i wasted. in the christus victor model, all is not lost. god becomes incarnate as jesus christ, and his birth, life, teaching, miracles, passion, death, and resur- rection have at least three roles. first, jesus is an exemplar, instructing us about god’s will and nature and how we should live. this level of instruction is not simply by way of didactic instruction, where we conceive of jesus as a super- professor. rather, jesus teaches by both word and example. while this stage or role in redemption is essential, it is deeply tied to the second role. second, jesus embraces the human condition, including what may be considered the natural punishment of sin (death), and yet he overcomes death and promises life to all mankind through his resurrection. on the anselmian model, jesus’ death is key. as anselm puts the matter, “god became man, and by his own death, as we believe and affirm, restored life to the dead.” in a sense, while i cannot restore fifty- five minutes to my students or bring back to life someone whom i have killed, god through christ can. on this view, christ’s bearing of sin amounts to christ’s bear- ing of the consequence—or, if you will, the punishment—involved in sin. imagine an analogy: you have been leading a life of deliberate, wrong- ful outrageous dissipation. you are experiencing organ failure and loss of blood. you confess your wrongdoing, repent, but cannot (of your own power) mend. but then christopher appears: he gives his own blood and indeed even organs to heal you. in so doing, he undergoes a suffering similar to the one you brought on yourself. in his life and example you observe a profound love for you. but, in the christus victor model we t h e g o l d e n c o r d cannot leave the analogy with the death of christopher. we have to go on to imagine that christopher genuinely gave his life so that you may live (he dies) and then that christopher passes from death to life. this may be supernaturalistic for some readers, but it is thoroughly in line with new testament and christian teaching about redemption and the resurrection. in scripture, jesus identifies himself as the resurrection. in john : , jesus does not say “i am the crucifixion” or “i am death” but “i am the resurrection.” to be sure, you cannot be resurrected unless you die, but in life and history, death is routine. it is the resurrection that is the good news. and third, the holy spirit completes our union with christ. the union with the holy spirit is crucial to this model since it functions to redeem the penitent by his adoption into god’s life. in the process of re- demption leading to atonement, he becomes a child of god. this adop- tive incorporation of the self into the divine god may be something that is dynamic and to be renewed ( cor. : ; eph. : ; phil. : ). so, let’s go back to pat and kris. an important element in this model is the need for the wrongdoer to utterly renounce the past error and thereby to die to his past life or identity. in pauline language this is the death of the old adam, and its chief realization in salvation history is the death of christ (rom. ). we are to put away sin and then accept renewed life through his life, crucifixion, death, burial, and resurrection (rom. : ; gal. : ; col. : , : ). by identifying with the human condition, christ assumes the awful results of sin ( cor. : ; gal. : ), but what consummates the act is restoration through the resurrection. this account of redemption is deeply shakespearean. especially in the comedies, redemption comes about by someone being brought to life who was either dead or believed to be dead. in the winter’s tale, it appears that king leontes has killed his wife, queen hermione. only after lengthy mourning is he prepared for a reconciliation that occurs when hermione comes back to life (she was only in hiding). in cymbeline, imogen seems to die and is restored, thus bringing her estranged husband, posthumus, to repentance. in as you like it, the evil brother oliver repents after his good brother rescues him from death. in measure for measure, angelo is restored after it is realized that the person whom he sought to execute has redemption and time been restored. in pericles, reconciliation occurs through thaisa dying and then being brought back to life. similar patterns of moving from apparent death to life may be seen in much ado about nothing, twelfth night, and a comedy of errors. in some of shakespeare’s tragedies, evil befalls a main character because he cannot renounce his own evildoing (or, in a sense, die to his old self ). in macbeth, there is a brief moment when macbeth contemplates reform but does not act on it. the same is true in hamlet, when claudius considers confession. these cases of unrepentant acts can be seen as those in which the character turns that which is living into something dead, as when othello kills desdemona in a jealous rage. the christus victor model’s role in some of shakespeare’s works stands in contrast to stephen davis’s use of the bard. davis proposes that romeo and juliet would have been a farce if the capulets and the mon- tagues had come to realize that their feud was pointless and were recon- ciled. davis imagines that, after tybalt’s death, a stranger intervenes: “wait, let me speak. don’t you realize that this feud is a bad idea? think of all the people who have died and the people who could die today. wouldn’t it be better for the two families just to forgive and make up?” and then, simultaneously, the lords of the two houses realize that this stranger is correct. “yes,” they say, each hitting himself in the head, “that’s right. why didn’t we think of that? it would be better just to make up. let’s end the feud right here and now.” and at that, there is a group hug of all the actors on stage; everybody goes home happy; and the curtain falls. rather than such peacemaking, davis writes: “somebody had to die.” he holds that we sinners deserve a torturous death; “the amends [for the of- fending party, us]—so it might seem—would be for each person to die on a cross in payment for his or her sins.” davis adds, “but the trouble with that idea is that it would accomplish nothing. it would be a meaningless death.” his theology of substitution and sacrifice is bolstered by his ap- peal to leviticus , yom kippur, and the following passage in hebrews: “[w]ith out the shedding of blood, there is no forgiveness of sins” (heb. : ). davis summarizes his position: t h e g o l d e n c o r d in order to rectify it [our sin] an enormous cost had to be paid. god could not ‘just forgive.’ that would have been as pointless as fighting wars with robots or ending romeo and juliet with a group hug. a terribly wrong situation had to be set right. somebody had to die. and the one who died was christ. his blood paid the penalty for our sins. his death made pos- sible the forgiveness of our sins. that was the price that had to be paid. christ’s death on the cross made possible our redemption. when our sins are forgiven, the iron wall is knocked down. the estrangement is over. we can have fellowship with god. but to return to my main point: the christus victor tradition up- holds the fittingness of christ’s death and resurrection. in being put to death as an innocent person, christ took on and bore the effect of sin, but this was undertaken because—reversing davis’s dictum—someone has to live. in much ado about nothing, for example, the young soldier claudio believes that he has been betrayed by the maiden hero. on what was to be their wedding day, he repudiates her, causing her father to join with him in vile, annihilatory terms: “hence from her! let her die” (act , scene ). this fits the “someone had to die” precept, and indeed, in the face of leonato’s violent condemnation (“o, she is fall’n / into a pit of ink, that the wide sea / hath drops too few to wash her clean again”), she appears to die. however, this is not the end. a good friar conspires with the aggrieved family and friends of hero to make claudio and the others believe that she had died. it then becomes clear that hero, hav- ing been framed by villains, is innocent. claudio repents, mourns, but is ultimately healed when “the former hero! hero that is dead!” (act , scene ) comes back to life, they are joyfully reunited, and the friar leads the couple to a chapel to be married. the saving role of the dying and rising christ led some early church theologians to see jesus as the true phoenix: let us consider the strange sign which takes place in eastern lands, that is, in the regions near arabia. there is a bird called the phoenix. it is the only one of its kind and it lives for five hundred years. when the time for its dissolution in death approaches, it makes for itself a sepulchre of redemption and time frankincense and myrrh and the other aromatics, into which, when the time is fulfilled, it enters and dies. from its decaying flesh a worm is born, which is nourished by the juices of the dead bird until it grows wings. then, when it is strong, it takes up that sepulchre in which are the bones of the bird of former times, and carries them far from the land of arabia to the city of heliopolis in egypt; and there, in the daytime, in the sight of all, it flies to the altar of the sun where it places them; and then it starts back to its former home. the priests then inspect the records of the times and find that it has come at the completion of the five hundredth year. do we, then, consider it a great and wonderful thing that the creator of the universe will bring about the resurrection of those who have served him in holiness and in the confidence of good faith, when he demon- strates the greatness of his promise even through a bird? jesus, like the phoenix, dies and rises, and we are called, too, to die to past sins to become a new creature ( cor. : ). karl barth took this model of regeneration very seriously, holding that in coming to christ one literally becomes a new creature. saved persons still remain human in this process or, as barth put the point, the saved person “is still man and not cat!” what of those who do not know about christ’s redeeming work? are they doomed to being perpetually unredeemed? this may not be due to any fault of their own. according to the christus victor model, the life and work of christ are the means by which redeeming abundant life is made available for there to be a reconciliation or atonement of creatures and the creator. but nothing about this model precludes the merits and power revealed in christ’s life, death, and resurrection being available to those who do not know christ or even reject him as god incarnate. either in this world or the next, the offer of abundant life may be revealed; and, assuming free will, perhaps only those who steadfastly and completely re- ject such abundant life will remain unredeemed. a failure of redemption is unfortunately not difficult to envisage. imagine that i have done some- thing horrific, such as wrongfully killing another man. imagine further that he is miraculously brought back to life and i have an opportunity to be reconciled with him. but, rather than seeking atonement, i seize the t h e g o l d e n c o r d opportunity to kill him again. wouldn’t refusal of life count as a kind of self- damnation? rather than conclude this sketch of the christus victor model with a double homicide, consider william law’s vision in of god’s love and its central claim that this love will “raise all that is fallen”: for to know that love alone was the beginning of nature and creature, that nothing but love encompasses the whole universe of things, that the governing hand that overrules all, the watchful eye that sees through all, is nothing but omnipotent and omniscient love using an infinity of wisdom to raise all that is fallen in nature, to save every misguided creature from the miserable works of its own hands, and make happiness and glory the perpetual inheritance of all the creation is a reflection that must be quite ravishing to every intelligent creature that is sensible of it. thus to think of god, of providence, and eternity whilst we are in this valley and shadow of death is to have a real foretaste of the blessings of the world to come. pray, therefore, let us hear how the letter of scripture is a proof of this god of love. other models it may be useful to consider the credibility of the christus victor model by comparing it with several others. two accounts involve thought experi- ments or parables. consider first a parable advanced by one of my men- tors, philip l. quinn: imagine that a great magnate makes his two sons stewards of the two finest farms on his estate. the elder son irresponsibly neglects and thus ruins his farm, while the younger son conscientiously makes his farm flourish. as a result of his negligence, the elder son owes it to his father to make repara- tions by restoring his farm to its former prosperity. it would be severe but just for the father to punish him by disinheriting him if he does not repair the ruined farm. unfortunately, the elder son is not a good enough farmer to be able to accomplish this task. . . . acknowledging his responsibility redemption and time and guilt, the elder son repents of his negligence, and sincerely apologizes to his father. but the father . . . cannot help thinking that repentance and apology are not enough. . . . moved by love for his brother as well as by devotion to their father and the welfare of his estate, the younger son undertakes to restore the farm that his brother has ruined to its former prosperity. . . . his guilty elder brother joins with him in this undertak- ing. and then a senseless tragedy occurs. at harvest time . . . marauding outlaws catch him [the younger son] in the open, slay him, and set the hay ablaze. his heroic attempt to restore the ruined farm ends in failure. but his sacrifices so work upon the grieving father’s heart that he . . . merci- fully refrains from exercising his right to disinherit his erring elder son. quinn’s thought experiment seems like a plausible account of how a christ- like innocent brother might make a sacrifice that helps to bring about atonement. this parable is quite different from the christus victor model. in quinn’s story the death of the younger brother is “a senseless tragedy” rather than part of christ’s assuming the human condition, but this is a minor difference. the key difference is that there is no resurrec- tion. the younger brother dies, whereas in the christus victor model, christ dies to be resurrected and to promise resurrected life to others. the parable sees the saving work of the younger brother in terms of restor- ing to life that which was lost. i do not conclude that quinn’s parable is implausible or unfitting, but i suggest that the christus victor model speaks more effectively to the joy that christians take in christ’s redeem- ing work. consider, now, richard purtill’s thought experiment: a certain king had a jewel which he valued so highly that he had enlisted a band of knights, sworn to safeguard the jewel or die in the attempt. an enemy of the king, desiring the jewel, corrupted the knights one after an- other, some with bribes, some with threats, and some with promises. then the enemy carried off the jewel. the king’s son, who had been away with his squire while this was happening, returned to find the jewel gone. he went alone into the enemy’s stronghold and after great suffering, managed to get the jewel back. on his return the king held court. the foresworn t h e g o l d e n c o r d knights came before him to express their sorrow and accept their punish- ment. the king’s son was also there, and his father praised him for his heroism, promising him whatever reward he wished. the prince said to the king, “father, as my reward i ask that you do not punish the fore sworn knights. let my sufferings in getting back your jewel be all that anyone has to suffer in this matter.” this parable also seems to be a plausible case of an innocent person’s suf- fering winning favor and atonement. it does have some demerits, however. in purtill’s story, the innocent person’s chief role is to placate the king. on the christus victor model the problem is one of restitution. once i have harmed another person wrongly, i simply cannot restore the loss. only god can pave the way for full restoration. the christus victor model thereby gives a more central and deeper role to the work of christ. also, on purtill’s model the jewel is the king’s property, not a living thing, and its safekeeping is a matter of honor. the christus victor model sees the work of redemption not as the restoration of a valuable gemstone but as the restoration to life of those who die. incarnation and time before we move on to the next chapter, “eternity in time,” a modest observation: it seems that christianity is committed to holding that god at least entered time through the incarnation. i do not claim that this is incompatible with the view that god’s very being (or god the father) is atemporal, but it does involve god breaking into time as an incarnate per- son. the incarnation may be seen as god’s blessing the different stages of life and thus, in a sense, god’s blessing of time. as saint irenaeus writes: he came to save all through himself—all, i say, who through him are reborn in god—infants, and children, and youths and old men. therefore he passed through every age, becoming an infant for infants, sanctifying infants; a child for children, sanctifying those who are of that age, and at the same time becoming for them an example of piety, of righteousness, redemption and time and of submission; a young man for youths, becoming an example for youths and sanctifying them for the lord. so also he became an old man for old men so that he might be the perfect teacher in all things—perfect not only in respect to the setting forth of the truth, but perfect also in re- spect to relative age—sanctifying the elderly and at the same time becom- ing an example to them. then he even experienced death itself, so that he might be the firstborn from the dead, having the first place in all things, the originator of life, before all and preceding all. just as the incarnation has been seen as a blessing of time, it also has been seen as god’s blessing the particularity and goodness of human flesh. the latter was a decisive reason why the early christian church resisted gnos- ticism, an early movement that regarded the body and the material world as evil. sometimes the particularity of the incarnation has been regarded as embarrassing. the roman philosopher celsus (second century) ridiculed the idea that an all- good god would assume base matter as a body. but ar- guably it is the bodily specificity of the incarnation that reminds one that christian love must itself not get lost in generalities—think of a person who loves humanity as a whole or the idea of humanity but has trouble liking individuals. let us now move into eternity. c h a p t e r eternity in time pay close attention to time, therefore, and consider how you spend it; for nothing is more precious than time. in one little moment, as small as it may be, heaven may be won or lost. —the cloud of unknowing in the first chapter i referred to the claim by one of my graduate school philosophy professors that “gravity is a manifestation of love” is obvious nonsense. my project so far has been to build a case for a view of god and the world that is distinct from that of contemporary naturalism and materialism. we have not quite gotten to the place where gravity and love are intertwined, in the spirit of dante or the supposed nonsense example, but we can now begin reflecting on the christian thought and experience that are like golden cords leading us to the eternal god. i have a british friend who, when he is told of some catastrophe or problems, usually responds with the line “i only work here.” i get the im- pression that my friend simply appears in our space- time universe from t h e g o l d e n c o r d time to time. perhaps his attitude is helpful, and perhaps he does have supernatural powers, though i find myself more transfixed by moments in which our space- time universe seems to open up and allows us an encounter with something more, something that cambridge platonists and other christians have described in terms of eternity. such glimpses or encounters can be dramatic, as with augustine and monica, or quite ordinary. one of my most moving recent experiences that i would de- scribe as an experience of the eternal consisted of feeling utterly in awe of an outpouring of compassion shown by a colleague for a friend who was battling cancer. the sky did not open and the colleague was not sur- rounded by flames, but i experienced it as transcendent and of everlast- ing value. in this chapter, let us consider the christian experience and reflec- tion on god’s eternity. some christian philosophers understand god to be timeless, others think of god as existing at each time, and still others think of god as temporal but in some sense the lord of time. as indi- cated in the introduction, this book does not take sides on this question. i want to look instead at the values that come into play when god is extolled as eternal. the bedrock of the great values involved in the expe- rience of the eternal god is a sense of god’s indwelling and a call to be drawn ever more deeply into the divine presence. three features come to the fore. the experience of and reflection on god as eternal impel us, first, to subordinate or repudiate the pursuit of worldly glory (fame, power, prestige); second, to recognize that god is the god of irrepressible life; and third (the subject of my last chapter), to recognize the hallowed nature of domestic virtue. divine indwelling and the journey to god following augustine and aquinas, classical christian theology claims that god is omnipresent through his power (all that exists is sustained by god’s creative will), knowledge (god knows all of creation), and es- sence. that god is present where you are now means, in part, that god knows unsurpassably all that transpires where you are: god knows you eternity in time thoroughly (there are no secrets hidden from god), and your being and all that is around you exists by virtue of his creative conservation. some of us in the platonic christian tradition go further in also claiming that god is affectively responsive to the goods and ills of creation. so, insofar as you are engaging in something good, this may be understood as engag- ing in what pleases god. this is part of the passibilist tradition discussed in chapter . st. gregory of elvira describes god’s ubiquity in colorful themes: “god is all eye, because he sees all; all ear, because he hears all; all mouth, because he is all word; all tongue, because he speaks all; all foot, because he is everywhere; all hand, because he operates every- where.” a passibilist would add: god is all heart, because god is affec- tively present everywhere. but while classical theists affirm god’s ubiquity, they have also dis- tinguished cases of when god may or may not be said to dwell within the soul. as augustine writes, “god is everywhere by the presence of his divinity, but not everywhere by the grace of his indwelling.” god’s in- dwelling requires the open reception or consent of the creature. once one is open to abiding in god, there is a kind of dual indwelling: the soul abides in god, and god abides in the soul. it is because of this abiding that many christian mystics speak of finding rest in god, a sabbath with no end (tempus interminable), a dynamic joy. in the classic the love of learning and the desire for god, jean leclercq writes of the dynamic hap- piness to be found in abiding in god: all the most beautiful things, the most pleasing to the senses, to be found in the scripture are called upon to give an idea of this total happiness: fruits, flowers, springtime, sunlit meadows, the glory of the saints, the splendor of the lamb, the recovered harmony between flesh and spirit, health, inexhaustible youth, understanding and mutual love among the elect, unalterable union—nothing is lacking of all that the christian could desire to receive from god upon entering the heavenly joys. but this hap- piness is not static, fixed once and for all within a boundary that cannot be crossed. happiness grows to the degree that it receives satisfaction, and is satisfied in the proportion that it grows. endlessly, desire and posses- sion cause each other to increase, because god is inexhaustible—and this t h e g o l d e n c o r d consideration is, no doubt, the one which best helps us acquire a certain picture of what eternity really is. . . . the joys which more than satisfy the senses and the spirit seem to renew themselves, because the lord gives of himself more and more. this dynamic joy linking god and creatures, or the vision of such a joy to be anticipated, seems to be an element in the encounter with god as eter- nal, for the encounter involves values that are everlasting and enduring. before delving into the awesome goods relating to the experience of and reflection on god’s eternity, i note that there are ways in which one’s ultimate view about god being temporal or timeless can have an impact personally. imagine that pat is a presentist and believes that god exists in the present, while kris believes god is atemporal and timeless. both, i submit, can apprehend and appreciate divine indwelling and calling, as well as the three great goods explored in this and the next chapter. both might well testify to the awesomeness of feeling god’s presence, and both might think that they are wholly present to god. but for pat, god’s temporal ubiquity will not include past and future, because presentists hold that only the present exists. still, i submit that, for both of them, encountering god as eternal involves encountering an overwhelming wholeness, as opposed to a fragmented or splintered reality, and the es- sence or fountain of life itself. they can both lay claim to boethius’ thesis: “eternity then is a full and perfect possession of the whole of everlasting life, altogether and at once,” though for pat the presentist there is an on- going, ever- renewing divine life in which god is fully and perfectly the essence of life itself both now and in the future. on that point, pat would have to treat boethius’ “at once” as something repeatable. both presentists and more traditional theists who regard god as atem po ral can appreciate that the experience of god may subordinate our ordinary, metric experience of time to an experience of a kind of sacred moment, or what charles taylor refers to as “higher times.” in a secular age, taylor observes that the recognition of sacred days (good friday or easter sunday, for example) can lead us to feel, in the present moment, close to the sacred events themselves. taylor puts the point this way: eternity in time now higher times gather and re- order secular time. they introduce “warps” and seeming inconsistencies in profane time- ordering. events which were far apart in profane time could nevertheless be closely linked. . . . good friday is closer in a way to the original day of the crucifixion than midsummer’s day . once events are situated in relation to more than one kind of time, the issue of time- placing becomes quite transformed. while the traditionalist might think of the original good friday as still existing but at a specific point in the past, and the presentist thinks of the past as no more, both can appreciate experiences of transformation when the significance of an encounter with god at one moment leads one to weigh and view time from a kind of god’s- eye point of view. rather than (in taylor’s colorful phrase) finding ourselves “lost in our little patch of time,” we find ourselves in a new, profound, divine setting. transient and eternal goods the classic in the christian tradition on god’s eternity, the consolation of philosophy by boethius, can be read as a work of high philosophy in- spired by plato, aristotle, and plotinus. but, if read in this fashion, we can easily forget that this sixth- century text was written in a dungeon in alvanzano, near milan. it first and foremost warns us of the transience and seductive power of seeking worldly goods and reputations. boethius had been a consul to theodoric, king of the ostrogoths. in , good fortune led to his two sons also being appointed consuls. the next year he was named magister officiorum, a close advisor to the king. but in , his good fortune utterly collapsed, and he was convicted of treason and executed in . boethius’ meditation on divine eternity addresses some puzzles in philosophical theology, especially the quandary of reconciling god’s omniscience and human freedom. if god knows now that you will, for example, donate clothes to a charity tomorrow, how could you do other- wise? foreknowledge appears to fix the future. there are dozens of replies t h e g o l d e n c o r d to this puzzle; boethius’ solution is to point out that if god is eternal, then he does not foreknow what will take place, because god is not in time. your future is, as it were, present to god or, putting it differently, god is present to what we call the future: why then do you demand that all things occur by necessity, if divine light rests upon them, while men do not render necessary such things as they can see? because you can see things of the present, does your sight there- fore put upon them any necessity? surely not. if one may not unworthily compare this present time with the divine, just as you can see things in this your temporal present, so god sees all things in his eternal present. wherefore this divine foreknowledge does not change the nature or indi- vidual qualities of things: it sees things present in its understanding just as they will result some time in the future. it makes no confusion in its distinctions, and with one view of its mind it discerns all that shall come to pass whether of necessity or not. boethius’ proposal (and variants of it) for reconciling omniscience and freedom has brilliant defenders today. but what many of his readers do not appreciate is his thesis that before god’s eternal presence, all our am- bitions for personal and worldly glory and success pale. boethius is asking us to consider what appears to be glory from the standpoint of divine everlasting wisdom and love: kings you may see sitting aloft upon their thrones, gleaming with pur- ple, hedged about with grim guarding weapons, threatening with fierce glances, and their hearts heaving with passion. if any man takes from these proud ones their outward covering of empty honour, he will see within, will see that these great ones bear secret chains. for the heart of one is thus filled by lust with the poisons of greed, or seething rage lifts up its waves and lashes his mind therewith: or gloomy grief holds them weary captives, or by slippery hopes they are tortured. so when you see one head thus labouring beneath so many tyrants, you know he cannot do as he would, for by hard task- masters is the master himself oppressed. eternity in time boethius is able to have this vision partly out of a sense of god’s knowl- edge, goodness, and power. realizing that god knows all can be emancipating. it means that god knows all sorrows in the cosmos; god knows of your family, the children or spouse you once had, loneliness, imprisonment, injuries and successes, failed relationships, broken promises, and sustaining friend- ships. for boethius, the simple thesis that there is a god who knows all would mean that boethius’ own particularly brutal execution would not go unwitnessed. a sense of god’s goodness and power were also central to boethius, for they ensured that death and annihilation are not the ab- solute end of the soul, and that the time for tyranny will end. his belief that the cosmos was created and is sustained for the good enabled him to see tyrants as dysfunctional or parasitic, misusing the talent and energy that are intended by the creator to be used for the good. boethius, like augustine and aquinas, held that power exercised in doing evil was not true or bona fide but the result of weakness—a failure to be wise, truly courageous, and just. perhaps it was boethius’ faith in god’s power that consoled him when he was waiting for his execution. we may lose family, relations, and friends to estrangement and death, and yet god both knows of such losses and has the power to restore us. this thesis seems central to augustine’s understanding of god’s eternal goodness. in the city of god, he consoles those who have faced heavy losses: and so there are indeed many bodies of christians lying unburied; but no one has separated them from heaven, nor from the earth which is all filled with the presence of him who knows whence he will raise again what he created. it is said, indeed, in the psalm: “the dead bodies of thy servants have they given to be meat unto the fowls of the heaven, the flesh of thy saints unto the beasts of the earth. their blood have they shed like water round about jerusalem; and there was none to bury them.” but this was said rather to exhibit the cruelty of those who did these things, than the misery of those who suffered them. to the eyes of men this appears a harsh and doleful lot, yet “precious in the sight of the lord is the death of his saints.” t h e g o l d e n c o r d the same concern for values is at work in augustine’s the city of god and boethius’ the consolation of philosophy when eternal goods and temporal goods are compared. in book of the city of god, augustine contrasts the power and su- preme goodness of humility over against imperial greatness: for i am aware what ability is requisite to persuade the proud how great is the virtue of humility, which raises us, not by a quite human arrogance, but by a divine grace, above all earthly dignities that totter on this shift- ing scene. for the king and founder of this city of which we speak, has in scripture uttered to his people a dictum of divine law in these words: “god resisteth the proud, but giveth grace unto the humble.” but this, which is god’s prerogative, the inflated ambition of a proud spirit also affects, and dearly loves that this be numbered among its attributes to “show pity to the humbled soul, and crush the sons of pride.” the last reference is from virgil, the imperial poet who is valorizing roman conquests. according to augustine, rome’s vast achievements are subordinate to the merits and work of christ. such a subordination rec- ognizes that while christ’s life and work took place in time, it has signifi- cance for all times and in all places. this is part of what some theologians have meant in claiming that the atonement revealed in christ is eternal. in god was in christ, d. m. baillie links the historical event of christ’s life and redeeming work with god’s merciful love. on this ac- count, christ’s life, death, and resurrection did not cause god to have mercy on sinners; rather, god’s merciful love was the cause behind (and hence antecedent to) the incarnation and act of redemption in time. baillie goes so far as to refer to the eternal, redemptive, sin- bearing love of god as atoning love. this is somewhat puzzling because atonement, as noted earlier, refers to a reconciliation, and one may well ask how there could be a divine- human reconciliation prior to there being humans. but there is scriptural precedent behind the notion that the gift of redemption was determined by god “before the world was made” (eph. : – ). as saint leo i taught, “it was in no new counsel nor by any tardy pity that god took thought of the situation of men; but from the foundation of the eternity in time world he established one and the same cause of salvation for all. for the grace of god, by which the whole body of the saints is ever justified, was augmented, not begun, with the birth of christ; and this sacrament of significations that those who believed its promise obtained no less than those who received its fulfillment.” baillie writes of the divine, eternal atonement that is realized in time in christ. and in christ we see manifested what god wills always, even before the incarnation. christ’s offering is identified as once for all in history: as god was incarnate in jesus, so we may say that the divine atonement was incarnate in the passion of jesus. and if we then go on to speak of an eternal atonement in the very being and life of god, it is not by way of reducing the significance of the historical moment of the incarnation, but by way of realizing the relation of the living god to every other historical moment. god’s reconciling work cannot be confined to any one moment of history. we cannot say that god was unforgiving until christ came and died on calvary; nor can we forget that god’s work of reconciliation still goes on in every age in the lives of sinful men, whose sins he still bears. emil bruner held a similar idea, though he might have overstated it: “the atonement is not history. the atonement, the expiation of human guilt, the covering of sin through his sacrifice is not anything which can be conceived from the point of view of history. this event does not belong to the historical plane. it is super history, it lies in the dimension which no historian knows in so far as he is a mere historian.” i suggest that this might be overstatement because it is the temporal particularity of the incarnation that allows us to recognize what early christians saw as god blessing time and material bodies (a point i advanced in the last chapter). but the overall baillie- brunner thesis speaks to the boethian and augustinian point that all temporal, transient powers need to be (from a christian point of view) subordinate to the everlasting, eternal redeeming life, work, death, and resurrection of christ. before moving to the next dimension of value in the encounter with the eternal god, a further point needs to be made about augustine’s view t h e g o l d e n c o r d of time. in the confessions, augustine gives ample space to reflections on the nature of time itself in a fashion that is philosophically fascinat- ing. while acknowledging its intrinsic interest for the philosophy of time, however, i suggest that augustine’s central goal is discovering god’s pres- ence either in or beyond time as we know it. his conclusion that time is to be found in god generates a heightened sense that our measurement of time itself needs to be understood with reference to the mind of god: it is in my own mind, then, that i measure time. i must not allow my mind to insist that time is something objective. i must not let it thwart me because of all the different notions and impressions that are lodged in it. i say that i measure time in my mind. for everything which happens leaves an impression on it, and this impression remains after the thing itself has ceased to be. it is the impression that i measure, since it is still present, not the thing itself, which makes the impression as it passes and then moves into the past. when i measure time it is this impression that i measure. either, then, this is what time is, or else i do not measure time at all. augustine’s work on time seamlessly leads him to reflect on time in the liturgy: it is not like the knowledge of a man who sings words well known to him or listens to another singing a familiar psalm. while he does this, his feelings vary and his senses are divided, because he is partly anticipating words still to come and partly remembering words already sung. it is far otherwise with you, for you are eternally without change, the truly eternal creator of minds. in the beginning you knew heaven and earth, and there was no change in your knowledge. in just the same way, in the beginning you created heaven and earth, and there was no change in your action. some understand this and some do not: let all alike praise you. you are supreme above all, yet your dwelling is in the humble of heart. for you comfort the burdened, and none fall who lift their eyes to your high place. for both boethius and augustine, reflections on god’s eternity coax us to detach ourselves from worldly success and to not lose our souls in eternity in time fragmented, conflicting desires. it is god’s fullness of being that is key. saint gregory of nazianzus uses a meditation on god’s eternal fullness to humble human pretensions to knowledge: god always was and is, and will be; or better, he always is. was and will be are portions of time as we reckon it, and are of a changing nature. he, however, is ever existing; and that is how he names himself in treating with moses on the mountain. he gathers in himself the whole of being, because he has neither beginning nor will he have an end. he is like some great sea of being, limitless and unbounded, transcending every concep- tion of time and nature. only his shadow falls across the mind, and even that but dimly and obscurely, as shadow produced not by what he truly is, but only by the things around him, partial images gathered from here and there and assembled into one, some sort of presentation of the truth, but which flees before it is grasped and escapes before it is conceived. we are not thereby bidden to forsake the shadowy ideas we have of god, though we do well to realize that his fullness transcends our best ideas. to summarize this first awesome good: a realization of god as eternal subordinates or exposes the vanity of the pursuit of worldly, temporal values. one of the central teachings in the christian platonic tradition is that the pursuit of worldly power and pride is empty from the standpoint of god’s eternity, and we may and should be consoled when we realize the extent of the knowledge and power of this eternal god. the second awesome good that is part of the experience of the external god is the experience of god as the essence and source of all life. god as the essence of boundless life the literature on eternal life suggests that in the encounter with god, one encounters the foundation for the limitless fulfillment of created persons. this extraordinary testimony to god’s eternal, life- giving power is ex- tolled in the ecstatic ending of saint bonaventure’s the tree of life, writ- ten in the thirteenth century: t h e g o l d e n c o r d from this fountain [of life and light] flows the stream of the oil of gladness, which gladdens the city of god, and the powerful fiery torrent, the torrent, i say, of pleasure of god from which the guests at the heavenly banquet drink to joyful inebriation. . . . anoint us with this sacred oil and refresh with the longed- for waters of this torrent the thirsting throat of our parched hearts so that amid shouts of joy and thanksgiving we may sing to you a canticle of praise. . . . in bonaventure’s poem, as well as in so much of the literature describing the experience of and reflection on god’s eternity, one finds in god the essence of life itself. there is no other reality more alive, more plentiful in superabundant goodness. there is often a sense of god as self- generating, inexhaustible goodness and beauty. this seems to be at the core of augus- tine’s recognition of god as beauty, ever new, and also the testimony of the poet r. s. thomas, cited in the introduction, in which there is refer- ence to “a young god.” in the divine names of denys the areopagite, god is extolled as self- diffusive goodness; creation may be a free act of god, but it also is a natural outpouring of divine goodness. and in ex- ercising god’s generative creative power, there is no diminution of god’s being. as gregory of nyssa writes, god is “always the same, never increas- ing or diminishing . . . standing in need of nothing else, alone desirable, participated in by all but not lessened by their participation.” perhaps one way to highlight the experience of god’s inexhaustible, self- diffusive goodness is to compare the opposite experience. there are few books better than charles williams’s descent into hell, which narrates a character’s descent into a meaningless void. lawrence wentworth goes eternity in time through experiences that are the mirror opposite of thomas’s. he is an ambitious, selfish historian who is given over to petty professional jeal- ousy, a frightening lust, and self- deception. gradually he loses the good of his mind and community, and, in the end, he is surrounded by baf- fling shapes: “there was, at the end of the grand avenue, a bobbing shape of black and white that hovered there and closed it. as he saw it there came on him a suspense; he waited for something to happen. the si- lence lasted; nothing happened. in that pause expectancy faded. presently then the shape went out and he was drawn, steadily, everlastingly, inward and down through the bottomless circles of the void.” expectancy is enhanced for finding insurmountable life. one other text worth pausing over to sketch the opposite of the experience of god’s eternity as boundless life is christopher marlowe’s play doctor faustus. the devil mephistophilis describes hell to dr. faus- tus in terms of a deprivation of everlasting bliss: “[w]hy this is hell, nor am i out of it. / think’st thou that i, who saw the face of god, / and tasted the eternal joys of heaven, / am not tormented with ten thousand hells / in being deprived of everlasting bliss?” in this succinct vision, hell is a deprivation, an inversion of the intoxicating joy expressed by bonaventure. in faustus’ final speech before his damnation, there is a searing sense that because he has repudiated the eternal god, time itself has become an enemy: o, faustus, now hast thou but one bare hour to live, and then thou must be damned perpetually. stand still, you ever- moving spheres of heaven, that time may cease, and midnight never come. fair nature’s eye, rise, rise again and make perpetual day. or let this hour be but a year, a month, a week, a natural day, that faustus may repent and save his soul. the stars move still, time runs, the clock will strike. the devil will come, and faustus must be damned. t h e g o l d e n c o r d being unable to stop time, faustus wrestles until the last instant with his folly. o, i’ll leap up to heaven; who pulls me down? one drop of blood will save me. rend not my heart, for naming of my christ. yet will i call on him. o spare me, lucifer. let faustus live in hell a thousand years, a hundred thousand, and at last be saved. no end is limited to damned souls. the clock strikes twelve. it strikes, it strikes! now body turn to air, or lucifer will bear thee quick to hell. o soul be changed into small water drops, and fall into the ocean ne’er be found. thunder, and enter the devils. o mercy, heaven! look not so fierce on me; adders and serpents let me breathe awhile. ugly hell, gape not; come not lucifer! i’ll burn my books! oh, mephistophilis! exeunt. unlike goethe’s faust, marlowe’s faustus seems damned even when he is still alive, and he becomes increasingly desperate with each passing mo- ment as he moves from life to death. there is a vast chasm between marlowe’s tragic protagonist and bonaventure’s portrait of the soul devoted to god. two features of the experience of god’s boundless life should be highlighted: first, the way in which the experience of god as the essence of life leads the soul to naturally long for and love god; and, second, the impact of this love for the belief in the life beyond this one. indeed, the conviction that we are naturally drawn to the love of god is especially evident in christian medi- tations on the song of songs, the old testament erotic love poem, which eternity in time many jewish and christian mystics have interpreted as depicting the love affair between god and the soul. the magnifying quality of god’s love involves the soul’s coming to share the power of divine love. one way to spell this out is by appreciating the general precept that if something is good (compassion, virtue, justice, wisdom), then to love the good object is itself good. for example, compas- sion is good, and there is an additional, expanded good when compassion is loved. in this respect, goodness is different from material properties: to love a horse or the color blue is not to be a horse or blue. but with good- ness, as with beauty and wisdom, there is a diffuse power in which the love of beauty and the love of wisdom are themselves beautiful and wise. a similar, darker outcome occurs with some vices: if you love cruelty, you are yourself (in some respects) cruel even if you never behave cruelly. in the christian platonic tradition the love of god is itself divine insofar as the love is itself what god wills and involves the affective join- ing of god and creature, for no love of god goes unrequited. the vital importance of god’s desire for our love (that is, of reciprocation) is pow- erfully argued for by sor juana inés de la cruz in her theological works. a creature’s love of god will always meet an antecedent love of god for the creature. also, insofar as god is superabundant beauty, goodness, and wisdom, the love of god will itself be marked by divine beauty, goodness, and wisdom. kierkegaard offers this profound portrait of how human and divine love can be interwoven and magnified: when we say, ‘love saves from death,’ there is straightway a reduplication in thought: the lover saves another human being from death, and in en- tirely the same or yet in a different sense he saves himself from death. this he does at the same time; it is one and the same; he does not save the other at one moment and at another save himself, but in the moment he saves the other he saves himself from death. . . . but the lover is not thereby forgotten. no, he who in love forgets himself, forgets his sufferings in order to think of another’s, forgets what he himself loses in order lovingly to consider another’s loss, forgets his advantage in order lovingly to look after another’s advantage: truly, such a person is not forgotten. there is t h e g o l d e n c o r d one who thinks of him, god in heaven; or love thinks of him. god is love, and when a human being because of love forgets himself, how then should god forget him! in kierkegaard’s vision, the god of eternal love blesses the lives of created persons. as far as the afterlife goes, some contemporary christian thinkers treat the traditional belief in life after death as a metaphor. d. z. phillips has endeavored to translate talk of eternity into talk about what is of ul- timate importance. in his view, death is an annihilation of persons; there is no soul, and yet we can and should still retain much religious language about eternal judgment. phillips seeks to advance his thesis in light of an experience he had in poland in which the concept of “eternal judgment” has nothing to do with an afterlife: warning of such an eternal judgment is given in the gospels. i was privi- leged to be present on an occasion when i heard the warning delivered in a memorable sermon. it was in warsaw, shortly before the solidarity revolution. i was attending a requiem mass for a student who had had his stomach kicked in by the police a year earlier. the police, of course, were not prosecuted. the doctors who tried, unsuccessfully, to save the stu- dent’s life were too useful to prosecute. but the ambulance men . . . were given long prison sentences for criminal negligence. it was said that they had killed the student by the improper way they had lifted him and car- ried him to hospital. i shall never forget the opening words of the priest’s sermon . . . ‘let us pray for murderers. our brother is with the lord. but there are those who are walking about with murder in their souls. what a terrible state to be in! let us pray for murderers.’ the authority in these words comes from their being the judgment which talks of pity and pun- ishment at the same time. the most pitiful and terrible thing would be for the murderer not to repent before death. when the priest proclaimed that “our brother is with the lord,” he meant it. most, or at least many, christians would believe the priest when he contends that the student has not perished everlastingly but is with the eternity in time god of life who conquered death through christ. origen gives expression to the experience of god as life itself when he writes: “what sort of life shall we live when we are no longer living under the shadow of life but are in life itself?” phillips’s concept of “eternity expressed in time” does not speak to the great experience of the eternal god in christian tradition, who brings us ultimately into origen’s “life itself.” one way to bring out the shortcoming of phillips’s position is this thought experiment: imagine that phillips deeply loved the student and that he had it in his power to save him. wouldn’t he use this power? now, imagine that there is a god of limitless power and love. wouldn’t such a god save the student from perishing everlastingly? i suggest, in light of the christus victor model defended in the last chapter, that the absence of life beyond this one would amount to the absence or failure of redemption and atonement. some goods seem viable only for limited or intermittent periods. an exciting conversation, say, no matter how deep, profound, and mind- expanding will eventually reach a point when the participants want a break. but our concept of being a person is different. can one ever exhaust the good of being a person? i suggest that our very concept of a person capable of multiple experi- ences, acts, and loves is (in reference to and in response to god’s love) an irrepressible good; there is a glory to bonaventure’s vision of a perpetual delight in the vivifying powerful love of god. origin gives expression to the experience of god as life itself when he writes: what sort of life shall we live when we are no longer living under the shadow of life but are in life itself? living with eternal life bonaventure’s extolling god as the fountain of life securely locates god as the source and the chief reference point in how to live. fountains and wells have been rich metaphors in christian mystical tradition. it is by jacob’s well that jesus taught the samaritan woman about eternal life (john ). and abraham’s servant acts rightly by a well and finds a wife for isaac (gen. ), whereas saul behaves dishonorably. one of the key t h e g o l d e n c o r d elements in thinking of eternal life in terms of a fountain or a well came home to me during a recent conference on meditation in world religions. at the conference there were representatives of hindu, buddhist, jewish, islamic, quaker, and christian traditions. each person spoke movingly and sometimes autobiographically. but one man, who is now a sufi, described his “spiritual journey” in a way that i found difficult. he claimed to have once been a buddhist, then a hindu, then an evangelical christian, then a daoist, and then finally a sufi. he described himself as digging a series of “shallow wells.” only when he came to identify himself as a sufi did he dig “a deep well.” i suggest that with christianity and the other faith traditions, includ- ing sufism, it is helpful to realize that the well or fountain is already there. an inquirer may, as it were, try to drink from a fountain or let down a bucket into a well and be disappointed, but there is no need to picture oneself as actually digging wells. indeed, if bonaventure is correct, then the water is already there for the drinking. in the gospel of john, jesus said to the samaritan woman at the well: “every one who drinks of this water will thirst again; but whoever drinks of the water that i shall give him will never thirst; the water that i shall give him will become in him a spring of water welling up to eternal life” (john : , ). this portrait of abundance stands in contrast to johannes tauler’s fourteenth- century warning: surely, these are the cisterns from which nothing wells up from the ground, from which everything flows away as quickly as it came. what may pass for religion in these people is nothing but a set of methods and practices of their own choice. they do not turn to their ground; they have neither desire nor thirst for what is profound and never go below the surface. as long as they have fulfilled their outward observances, they are thoroughly satisfied. the cisterns they have made for themselves suit them fine, and for god they do not thirst. and so they go to sleep at night, and they rise again in the morning to their old routine, with which they are well pleased. but by adhering to the cisterns which they have dug for themselves in such a blind, cold, and hard way, they leave the fountains of living water untouched. c h a p t e r glory and the hallowing of domestic virtue all our life is a festival: being persuaded that god is everywhere present on all sides, we praise him as we till the ground, we sing hymns as we sail the sea, we feel his inspiration in all that we do. —clement of alexandria now i behold as in a mirror, an icon, in a riddle, life eternal, for that is naught other than that blessed reward wherewith thou never ceasest most lovingly to behold me, yea, even the secret places of my soul. with thee, to behold is to give life. —nicholas of cusa consider g. k. chesterton’s delightful account of divine reveling in the context of his study of the works of charles dickens. nothing could be further from the dinner party of woolf ’s to the lighthouse. i cite ches- terton at length: t h e g o l d e n c o r d to every man alive, one must hope, it has in some manner happened that he has talked with his more fascinating friends round a table on some night when all the numerous personalities unfolded themselves like great tropical flowers. all fell into their parts as in some delightful impromptu play. every man was more himself than he had ever been in this vale of tears. every man was a beautiful caricature of himself. the man who has known such nights will understand the exaggerations of [dickens’s] “pick- wick.” the man who has not known such nights will not enjoy “pickwick” nor (i imagine) heaven. for, as i have said, dickens is, in this matter, close to popular religion, which is the ultimate and reliable religion. he conceives an endless joy; he conceives creatures as permanent as puck or pan—creatures whose will to live æons upon æons cannot satisfy. he is not come, as a writer, that his creatures may copy life and copy its nar- rowness; he is come that they may have life, and that they may have it more abundantly. . . . he is there, like the common people of all ages, to make deities; he is there, as i have said, to exaggerate life in the direction of life. the spirit he at bottom celebrates is that of two friends drinking wine together and talking through the night. but for him they are two deathless friends talking through an endless night and pouring wine from an inexhaustible bottle. a. e. taylor offers a similar portrait of how one might, in time, en- counter a kind of divine atemporality or at least a welcome detachment from our particular “patch of time” and a reclining and enjoyment of the present: at a higher level than that of mere animal enjoyment, such as we may get from basking before a good fire, or giving ourselves up to the delight of a hot bath, we know how curiously consciousness of past and future falls away, when we are, for example, spending an evening of prolonged enjoyment in the company of wholly congenial friends. the past may be represented for us, if we stay to think of it at all, by whatever happened before the party began, the future—but when we are truly enjoying our- selves we do not anticipate it—by what will happen when the gathering is glory and the hallowing of domestic virtue over. the enjoyment of the social evening has, of course, before and after within itself; the party may last two or three hours. but while it lasts and while our enjoyment of it is steady and at the full, the first half- hour is not envisaged as past, nor the third as future, while the second is going on. it is from timepieces, or from the information of others, who were not enter- ing into our enjoyment, that we discover that this single “sensible present” had duration as well as order. if we were truly enjoying ourselves, the time passed, as we say, “like anything.” this sense of timeless, unhurried consciousness resonates, for example, with t. s. eliot’s four quartets and is the mirror opposite of the dinner party in to the lighthouse. in this final chapter i propose that the eternality of god is closely related to the glory of god in the platonic christian tradition and the hallowing of domestic virtue. the two are deeply interwoven, because it is part of the divine glory to hallow domestic virtues. before looking into divine glory, however, we must take seriously pagan glory. on the topic of pagan glory, i have a confession: when i was a boy, i used to have a peculiar daydream about dying a heroic, but ignominious, hideous death. in one scenario i would come across a truck that had ac- cidentally caught on fire, with a child in the front seat. i would somehow rescue the driver and the child and yet in the process be utterly disfigured by the burning fuel. i would perish quietly, unrecognizable, as i handed the child unharmed to his mother. the root cause of this fantasy was a vain effort to achieve what the ancient greeks referred to as kleos, or glory. for homer, glory was a bloody affair and was often won on the battlefield. holding up the blood- stained armor of a foe brought you glory—a mixture of fear and awe in the praise of others. in the iliad and herodotus’ history, one finds examples of kleos in dying well in a heroic last stand: hector fell before his beloved city of troy while seeking to defend it, and his life historically has been taken as a monument to glory amid failure. similarly, in one of the most famous last stands in history, leonidas and his spartans won kleos as they fought to the last man in the battle of thermophylae to stem the great persian invasion. t h e g o l d e n c o r d worldly glory or kleos has had enormous, seductive power. it was, in part, the desire for glory that led athens into its tragic war with sparta in the peloponnesian war, a conflict that nearly brought athens to the point of annihilation. alexander the great and julius caesar saw themselves as bearers of kleos or glory, and the quest for glory was kept alive after the collapse of the roman empire in the west. the court of charlemagne cele brated his deeds in battle in the twelfth- century chanson de roland. and such modern empires as britain, spain, and napoleonic france sought that blend of fear and exultant awe in praise and self- glorification. such pagan glory is quite distant from the idea of glory in the new testa- ment and in much christian spirituality. eternal love in ordinary life versus kleos in the classics the birth of christianity mounted a challenge to pagan kleos. in the incar- nation, the eternal god of creation takes on human flesh and assumes the role of a servant (phil. : ). in the ancient greco- roman world, a servant was almost always a nonentity. although a servant or a slave may have had some status as a teacher, physician, or secretary, the vast majority were nameless (from the standpoint of greco- roman chronicles) and insig- nificant as individuals. the very idea that the external god of the cosmos might become incarnate as a servant was a revolutionary one. it was, of course, politically volatile, for it meant that those who were subordinate to the elite classes (the inheritors of wealth and power by birth) might be as important as their masters. it also meant that the ordinary tasks of life should be viewed in a new light. should the aristocratic elite rethink their view of the labor of a farmer or merchant or those condemned to work- ing in the mines? christianity was slow to develop a radical critique of slavery or servitude, but it did inaugurate a reconceiving of the ordinary and domestic. in pagan greco- roman culture, the domestic was subordi- nate to glory. as charles taylor has argued in a secular age, christianity involved recognizing the sacredness of ordinary, domestic life. kleos can still rightly be seen in heroic conflict—saint george can and should kill glory and the hallowing of domestic virtue a dragon; saint anthony can and should fight demons in the desert; and joan of arc really was inspired by god to enable the coronation of charles vii of france. but the overall teaching and ethos of christian tradition are to recognize the good of raising children, of cooking food, of making love within a framework of commitment (arthur and guinevere, yes; guinevere and launcelot, no), of education, farming, dancing, and so on. this blessing of ordinary life by the eternal god adds to the powerful critique advanced by boethius of the vanity of seeking worldly power and reputation. there is a homeliness in the new testament, in which one meets fish- ermen, tax collectors, prostitutes, adulterers, and ordinary soldiers, as well as rulers. the blend of the ordinary and extraordinary has been beautifully articulated by eric auerbach in his reflections on the arrest of jesus and his betrayal by peter: a tragic figure [peter] from such a background, a hero of such weakness, who yet derives the highest force from his very weakness, such a to and fro of the pendulum, is incompatible with the sublime style of classical antique literature. but the nature and the scene of the conflict also fall entirely outside the domain of classical antiquity. viewed superficially, the thing is a police action and its consequences; it takes place entirely among everyday men and women of the common people; anything of the sort could be thought of in antique terms only as farce or comedy. yet why is it neither of these? why does it arouse in us the most serious and most significant sympathy? because it portrays something which neither the poets nor the historians of antiquity ever set out to portray: the birth of a spiritual movement in the depths of the common people, from within the everyday occurrences of contemporary life, which thus assumes an importance it could never have assumed in antique literature. . . . what considerable portions of the gospels and the acts of the apostles describe, what paul’s epistles also often reflect, is unmistakably the beginning of a deep subsurface movement, the unfolding of historical forces. for this, it is essential that great numbers of random persons should make their appearance. t h e g o l d e n c o r d here, auerbach has captured the acute ways in which christian the- ism affirmed the extraordinary in the ordinary. the kind of spirituality that celebrates the domestic as well as the eternal can be seen in such seventeenth- century manuals as the practice of the presence of god by brother lawrence and jean- pierre de caussade’s meditations on “the holi- ness of the present moment.” in brother lawrence’s work, an everyday, ordinary spirituality is ex- tolled in which the soul lives in god’s presence through an ongoing single attention: i have since given up all forms of devotions and set prayers except those which are suitable to this practice. i make it my business only to persevere in his holy presence wherein i keep myself by a simple attention and a general fond regard to god, which i refer to as an actual presence of god. or, to put it another way, an habitual, silent, and secret conversation of the soul with god. this often causes me to have feelings of inward rap- ture—and sometimes outward ones! they are so great that i am forced to have to moderate them and conceal them from others. . . . my most use- ful method is this simple attention, done with a passionate regard toward god to whom i find myself often attached with greater sweetness and delight than that of an infant at its mother’s breast. so much so that—if i dare use this expression—i choose to call this state the bosom of god because of the inexpressible sweetness which i taste and experience there. in a complementary fashion, de caussade beautifully praises god in the present as part of an ever renewed attendance upon the duty at hand: god’s order and his divine will is the life of all souls who either seek or obey it. in whatever way this divine will may benefit the mind, it nourishes the soul. these blessed results are not produced by any particular circum- stance but by what god ordains for the present moment. what was best a moment ago is so no longer because it is removed from the divine will which has passed on to be changed to form the duty to the next. and it is that duty, whatever it may be, that is now most sanctifying for the soul. glory and the hallowing of domestic virtue my favorite case of blending domestic life with spiritual rigor is the work of sor juana inés de la cruz. in a letter written from her convent in mexico city, she offers some excellent advice: what could i tell you, my lady, of the secrets of nature that i have discov- ered while cooking? i observed that an egg unifies and fries in butter or oil, but to the contrary dissolves in syrup; that in order to keep sugar liquid it suffices to throw on it a very little bit of water flavored with quince or another bitter fruit; that the yolk and white of the same egg when sepa- rated and combined with sugar have an opposite effect, and one different from when they are both used together. i do not mean to tire you with such foolishness, which i only recount to give you a complete picture of my nature and because i think it will amuse you. but, my lady, what can women know except philosophy of the kitchen? lupercio leonardo has said it well: it is possible to philosophize while preparing dinner. part of the legacy of christian tradition is finding glory in ordinary life among ordinary people, seeing golden cords in ordinary conditions that suggest the overarching eternal love of god. one suggestive visual representation of the christian, hallowed na- ture of domestic virtue may be found in bodegón painting, a genre of art that reflects the cambridge platonist spirituality permeating this book. (as it happens, this style of painting flourished around the same time as the emergence of cambridge platonism.) the term bodegón, used to dis- tinguish seventeenth- century spanish still- life painting, typically refers to paintings of food and drink and other items from the pantry. the iconog- raphy in this usage of the term points to something very different, for ex- ample, from the historically significant still- life style called nature morta, which can function as a remembrance of death and the transience of all earthly pleasures. (think of momento mori, the latin phrase for remember your mortality, sometimes translated with more candor as remember you will die.) the spanish bodegón paintings are more of a remembrance of life than of its earthly end, hinting at an abundant sacred life beyond and surrounding the ordinary activities of eating and living. such paintings t h e g o l d e n c o r d provide a visual expression of the cambridge platonist thesis: our tran- sient but good life points to a greater, fuller life that surrounds and up- holds this one. four golden cords let us consider four golden cords that can lead us “in at heaven’s gate, built in jerusalem’s walls.” three are well known. the first blends roman- tic love and a sense of the divine; the second is a golden cord in the midst of profound evil; the third, a golden cord found in a time of serenity; and the fourth, a golden cord that undermined my boyhood fantasy about achieving worldly glory. for the first golden cord, consider dante’s meeting with beatrice one day in florence in . the poet dante was eighteen years old, and bea- trice was only a few months younger. dante describes seeing her in the company of two other women. as they walked down the street she turned her eyes toward me where i stood in fear and trembling, and with her ineffable courtesy, which is now rewarded in eternal life [beatrice died at the age of twenty- four], she greeted me; and such was the virtue of her greeting that i seemed to expe- rience the height of bliss. it was exactly the ninth hour of the day when she gave me her sweet greeting. as this was the first time she had ever spoken to me, i was filled with such joy that, my senses reeling, i had to withdraw from the sight of others. and yet, as dante put it, “from that time forward love fully ruled my soul.” he confessed: “if at that moment someone had asked me a ques- tion, about anything, my only reply would have been: ‘love.’ ” one lesson to draw from the dante- beatrice episode is that of re- ceptivity. if dante had not been open to “love” in that moment, there would have been no transport of delight that would eventually inspire him to write one hundred cantos testifying to the sovereignty of love over all things. “my will and my desire were turned by love,” writes dante at glory and the hallowing of domestic virtue the end of the divine comedy, “the love that moves the sun and the other stars.” in his the figure of beatrice, charles williams offers an engaging look at how a person can embody or channel a divine power while at the same time remaining herself. williams captures this dual role in the last words below, “this also is thou, neither is this thou”: beatrice was, in her degree, an image of nobility, of virtue, of the re- deemed life, and in some sense of almighty god himself. but she also remained beatrice right to the end; her derivation was not to obscure her identity any more than her identity should hide her derivation. just as there is no point in dante’s thought at which the image of beatrice in his mind was supposed to exclude the actual objective beatrice, so there is no point at which the objective beatrice is to exclude the power which is expressed through her. but as the mental knowledge or image of her is the only way by which that other power can be known, so she herself is (for dante) the only way by which that other power can be known—since, in fact, it was known so. the maxim of his study, as regards the final power, was: “this also is thou, neither is this thou.” the meeting with beatrice, or perhaps beatrice as dante imagined her, became a golden cord leading to the composition of the divine comedy, a work that may itself constitute a golden cord. for the second golden cord, consider saint maximilian kolbe, a pol- ish franciscan who underwent martyrdom in the nazi concentration camp of auschwitz in poland. rather than the beatrician vision blending romantic and eternal love, this is a case in which divine goodness is shown in the ugliest, most vile, and depraved of conditions. in the late s when war broke out, kolbe provided shelter for over three thousand ref- ugees from greater poland (including two thousand jews) in his friary in niepokalanów. he was arrested and sent first to the horrific pawiak prison in warsaw, where he was repeatedly beaten for his professed faith in god, and then sent to auschwitz. there are multiple eyewitness ac- counts of both the physical abuses he endured and the extraordinary ways in which he ministered to his fellow prisoners during the summer of . t h e g o l d e n c o r d in july, three prisoners escaped; in reprisal, ten from these men’s barracks were sent to the bunker, an underground starvation cell, and thus to their eventual deaths. kolbe offered to take the place of one of the ten, who had cried out in despair for his wife and children. bruns borgowiec, an interpreter in the bunker, was an eyewitness to kolbe’s last days: since [the prisoners] had grown very weak, prayers were now only whis- pered. at every inspection, when almost all the others were now lying on the floor, fr. kolbe was seen kneeling or standing in the centre as he looked cheerfully in the faces of the ss men. two weeks passed in this way. meanwhile one after another they died, until only fr. kolbe was left. this the authorities felt was too long; the cell was needed for new victims. so one day they brought in the head of the sick quarters, a german, a common criminal named bock, who gave fr. kolbe an injection of car- bolic acid in the vein of his left arm. fr. kolbe, with a prayer on his lips, himself gave his arm to the executioner. unable to watch this i left under the pretext of work to be done. immediately after the ss men with the executioner had left i returned to the cell, where i found fr. kolbe leaning in a sitting position against the back wall with his eyes open and his head dropping sideways. his face was calm and radiant. the heroism of fr. kolbe went echoing through auschwitz. in that desert of hatred he had sown love. indeed, jerzy bielecki, another eyewit- ness, declared that fr. kolbe’s death was “a shock filled with hope, bring- ing new life and strength. . . . it was like a powerful shaft of light in the darkness of the camp.” amid the utter despair of the concentration camp, it was a great golden cord. this line from the account of his death stands out with awesome simplicity and force: “it was then that the unexpected had happened, and that from among the ranks of those temporarily re- prieved, prisoner had stepped forward and offered himself in the other man’s place.” for the third golden cord, consider again the poet and vicar of ab- erdeen, r. s. thomas. in his poem “the bright field,” thomas describes how a moment’s experience of a natural setting hints at the need and calling to a greater experience of the eternal: “i have seen the sun break glory and the hallowing of domestic virtue through / to illuminate a small field / . . . and gone my way / and for- gotten it. but that was the pearl / of great price, the one field that had / treasure in it.” thomas’s imagery recalls two parables of jesus in mat- thew: “the kingdom of heaven is like treasure hidden in a field, which someone found and hid; then in his joy he goes and sells all that he has and buys that field. again, the kingdom of heaven is like a merchant in search of fine pearls; on finding one pearl of great value, he went and sold all that he had and bought it” (matt. : – ; nrsv). here, thomas is perhaps reminding us that in routine, anxiety, and mere “hur- rying” we can sometimes miss out on our encounter with the eternal. there may be certain places where a meditative openness can draw us out of ourselves. by way of filling out the experience thomas speaks to, it is worth considering the final lines in c. s. lewis’s reflections on the psalms: the external may meet us in what is, by our present measurements, a day, or (more likely) a minute or a second; but we have touched what is not in any way commensurable with lengths of time, whether long or short. hence our hope finally to emerge, if not altogether from time (that might not suit our humanity), at any rate from the tyranny, the unilinear poverty, of time, to ride it, not to be ridden by it, and so cure that always aching wound (“the wound man was born for”) which mere succession and mutability inflict on us, almost equally when we are happy and when we are unhappy. for we are so little reconciled to time that we are even as- tonished at it. “how he’s grown!” we exclaim, “how time flies!” as though the universal form of our experience were again and again a novelty. it is as strange as if a fish were repeatedly surprised at the wetness of water. and that would be strange indeed; unless of course the fish were destined to become, one day, a land animal. both thomas and lewis are commending the golden cord that can bring us to the eternal god of life. the fourth golden cord is personal and relates to my pathetic boy- hood fantasy about glory. i was attending a church service one day with my mother when i noticed a woman whose hands were badly scarred. t h e g o l d e n c o r d later my mother explained, “she left two of her children in her car when she ran a quick errand. when she returned to her horror, she saw that the car had caught fire. her hands were badly burned when she rescued both children.” the self- offering of the mother, undergoing disfiguration and willing to give up her life for her children, filled me with awe. the mother was probably completely unself- conscious about her sacrifice, whereas i would have been the opposite. her act was an act of love for her children; mine would have been an act for kleos. love, love, love. i end this short book with reflections on the link between eternity and divine glory. judaism, christianity, and islam challenged pagan glory by shifting our attention to the glory of god. awe and praise are owed prin- cipally to god rather than to emperors and empires, warriors and ath- letes, conquerors and magistrates. in christianity there is a traditional argument for god’s triune nature that holds that god is perfect in love. in order to be perfect in love, he must embody self- love, the love of one person for another, and the love of two persons for a third. arguably, self- love is essential for the other two loves. the second commandment (“you shall love your neighbor as yourself ”) presupposes self- love. as an example of love for another and love for a third (albeit a third object rather than a third person), consider the two great romantic poets wil- liam wordsworth and samuel coleridge. when they were young they loved each other (platonically) and they also loved a third, the english language. together and separately they were inspired to great heights of achievement. and it was only when vanity overcame wordsworth, and opium and self- doubt crippled coleridge, that they faltered. the christian trinity also may be seen as three persons with self- love; there is the love between father and son, and the love of both father and son for the holy spirit. if god is timeless, then these three loves are atemporally eternal. if god is temporal, then these loves are continuous and renewed in the present. the worship of god—on either model— amounts to a delight in the highest loves and, ideally, would unite us with glory and the hallowing of domestic virtue what god himself loves. as the cambridge platonist ralph cudworth proclaimed in the seventeenth century, no man is truly free, but he that has his will enlarged to the extent of god’s own will, by loving whatever god loves, and nothing else. such a one does not fondly hug this and that particular created good thing, and enslave himself to it; but he loves everything that is lovely, beginning at god, and descending down to all his creatures, according to the several degrees of perfection in them. he enjoys a boundless sweetness, according to his boundless love. he enclasps the whole world within his outstretched arms; his soul is as wide as the whole universe, as big as yesterday, today, and forever. this vision is continuous in new testament sources such as corinthians and also in clement’s first- century declaration: who is able to explain the bond of the love of god? who is equal to the telling of the greatness of his beauty? the height to which love lifts us is unutterable. love unites us to god. love covers a multitude of sins. love endures all things, is long- suffering in everything. there is nothing vulgar in love, nothing haughty. love makes no schism; love does not quarrel; love does everything in unity. in love were all the elect of god perfected; without love nothing is pleasing to god. in love did the master take hold of us. for the sake of the love which he had for us did jesus christ our lord, by the will of god, give his blood for us, his flesh for our flesh, and his life for our lives. clement’s views provide a sharp contrast to ancient kleos. rather than being won by killing an enemy on the field of battle, glory is won by christ’s self- offering, the shedding of his blood, and the resurrection, that there might be renewed life. now, let me add two caveats in closing. first, nearly all christian mystics and those who have reflected and defended christian mysticism agree that moral theology and practice is antecedent to mysticism. one cannot reasonably pursue the relationship with the eternal god of love t h e g o l d e n c o r d while living a lie, rancorous and unjust. a longer book on eternity would require a deeper treatment of the ethics of character. here, i merely cite a twelfth- century text, richard of st. victor’s the twelve patriarchs, that insists that primacy must go to moral theology over mystical theology. richard likens moral theology to leah and mystical theology to rachel in the genesis story of jacob, who loves and desires rachel but first, as demanded by her father, must marry leah. those who have been taught by experience rather than by hearing easily recognize how often it happens that leah is substituted when rachel is hoped for. . . . for what do we call sacred scripture except the bedcham- ber of rachel, in which we do not doubt that divine wisdom is hidden beneath the veil of attractive allegories? rachel is sought in such a cham- ber as often as spiritual understanding is sought out in sacred reading. but so long as we are incapable of penetrating sublime things, we do not find the long- desired, diligently sought rachel. . . . on the contrary, this divine reading frequently makes us aware of our foulness and pricks our hearts with compunction, when we consider it while we are unwilling and even seeking something else in it. therefore, as often as we find compunc- tion rather than contemplation in divine reading, without doubt we have found not rachel but leah in the bedchamber of rachel. second, many christian mystics testify that the journey to the eternal god must pass through a “dark night of the soul,” the noche obscura. john of the cross is the true master of this path. and i highly recommend nicholas of cusa’s learned ignorance as well as the cloud of unknowing on this ardent but difficult and arid passage of purgation and cleansing on the soul’s journey. but however arduous the moral training and the purgation of the soul, the endpoint of divine eternal glory is widely witnessed to in chris- tian experience and reflection as a kingdom of reconciliatory, redemptive, eternal loving joy. if there is any truth in such a vision, i suggest again that gravity may be a manifestation of love after all. it seems fitting to add that one of the great means of recognizing such love that moves the sun and the other stars—as universally testified to in christian theology as a glory and the hallowing of domestic virtue whole, not just the platonic christianity of this book—is humility. saint john climacus offers us the following sublime image: humility is a heavenly waterspout which can lift the soul from the abyss up to heaven’s height. someone discovered in his heart how beautiful humility is, and in his amazement he asked her to reveal her parent’s name. humility smiled, joyous and serene: “why are you in such a rush to learn the name of my begetter? he has no name, nor will i reveal him to you until you have god for your possession. to whom be glory forever.” amen. the sea is the source of the fountain, and humility is the source of discernment. in this exchange, by the divine sea, when she is asked about her parent- age, i picture humility laughing with a joy that welcomes you and me to join her. n o t e s introduction . ernest hemingway: a literary reference, ed. r. w. trogdon (new york: carroll and graf, ), . . jerry l. walls, heaven: the logic of eternal joy (oxford: oxford univer- sity press, ), . . pierre tielhard de chardin, christianity and evolution, trans. rené hague (london: collins, ), . . thomas nagel, the view from nowhere (oxford: oxford university press, ), . . ibid., . . see charles carlton, going to the wars: the experience of the british civil wars, – (london: routledge, ), esp. – . . on current cosmology and christian eschatology, see “the end of the world” by w. h. craig, in vol. of science and religion in dialogue, ed. m. y. stewart (oxford: wiley blackwell, ). . i do not claim that cambridge platonist writings directly influenced this group (known as the inklings), only that their spirituality and the spirituality of the cambridge platonists bear a strong family resemblance. . peter sterry, “a discourse of the freedom of the will,” in cambridge platonist spirituality, ed. charles taliaferro and alison j. teply (new york: paulist press, ), . . virginia woolf, to the lighthouse (new york: harcourt, ), . . ibid., . . w. h. auden, “the protestant mystic,” in forewords and afterwords (new york: random house, ), . . for an overview of cambridge platonism, see cambridge platonist spir- ituality, ed. taliaferro and teply; w. r. inge, the platonic tradition in english religious thought (new york: longmans, green and co., ); the cambridge platonists in philosophical context: politics, metaphysics, and religion, ed. g. a. j. rogers et al. (dordrecht: kluwer, ); benjamin carter, “the little common- wealth of man”: the trinitarian origins of the ethical and political philosophy of ralph cudworth (leuven: peters, ); and charles taliaferro, evidence and notes to pages – faith: philosophy and religion since the seventeenth century (cambridge: cam- bridge university press, ), chap. . it is gratifying to see one of the cam- bridge platonists, henry more, included in a popular work, great thinkers of the western world, ed. i. p. mcgrell (new york: harperresource, ). one of the greatest historians of ideas, richard popkin, pays more this somewhat guarded compliment: “although more was not the most precise or consistent thinker of his time, he was one of the liveliest, wittiest, and satirical polemical writers of his day” (in great thinkers of the western world, ed. mcgrell, ). . ralph cudworth, “a sermon preached before the honorable house of commons at westminster, march , ,” in cambridge platonist spirituality, ed. taliaferro and teply, . . ibid. . william blake, “jerusalem,” in the complete poetry and prose of william blake, ed. david v. erdman, harold bloom, and william golding (new york: random house, ), . . susan blackmore, conversations on consciousness: what the best minds think about the brain, free will, and what it means to be human (new york: oxford university press, ), . . george orwell, “the lion and the unicorn,” in why i write (new york: penguin books, ), . . for a brilliant defense of god’s eternity as an atemporal reality, see brian leftow, time and eternity (ithaca: cornell university press, ), as well as paul helm, eternal god (oxford: clarendon press, ); for the idea that god is in a “time beyond time,” see r. m. helm, “some reflections on the neoplatonic view of space and time,” in neoplatonism and contemporary thought, ed. r. b. harris (albany: suny press, ), – . for a defense of god’s temporality, see richard swinburne, the coherence of theism, d ed. (oxford: oxford univer- sity press, ). . tatian the syrian, “address to the greeks,” in the faith of the early fathers, ed. and trans. w. a. jurgens (collegeville, mn: liturgical press, ), : . . r. s. thomas, as cited in threshold of light: prayers and praises from the celtic tradition, ed. a. m. allchin and esther de waal (london: dalton, long- man, and todd, ), . . confessions of saint augustine, trans. r. s. pine- coffin (new york: viking penguin, ), book , p. . . one of the central elements in the christian view of god’s eternity is the boundless, inexhaustibleness of god’s life. in my view, advocates of god’s atemporality and those who believe that god is everlasting can claim to recognize god’s perfect possession (perfecta possessio) of boundless life (interminabilis vitae), even if they disagree about whether this occurs in a never- changing instant—a state that is tota simul, without past or future—or whether god’s life is ever new in the present. whether i am correct in this proposal, however, is not the central topic of this book. notes to pages – . wittgenstein’s remark stands as a sharp contrast to immanuel kant, who referred to god as the most real being, ens realissimum. . stendhal, the red and the black, trans. c. k. scott- moncrieff and r. busoni (new york: modern library, ), . . charles taliaferro, love, love, love and other essays: light reflections on love, life, and death (cambridge, ma: cowley publications, ). . i do not disparage apologetics. indeed, one of the greatest early philo- sophical works is plato’s apology on behalf of his teacher, socrates. but my book is more of an exploration or extended essay than a work of systematic apologetics. . see my philosophy of religion: a beginner’s guide (oxford: one world press, ), dialogues about god (lanham, md: rowman and littlefield, ), and consciousness and the mind of god (cambridge: cambridge univer- sity press, ). for a critique of naturalism and an implied, indirect defense of theism, see my naturalism, co- authored with stewart goetz (grand rapids: eerdmans, ). chapter . love in the physical world . dante, the divine comedy, vol. , paradise, trans. dorothy l. sayers and barbara reynolds (harmondsworth: penguin, ), . – (p. ). . daniel dennett, consciousness explained (boston: little, brown, ), . . d. m. armstrong, the nature of the mental and other essays (ithaca: cornell university press, ), , . . alistair hannay, “the claims of consciousness: a critical survey,” in- quiry ( ): . . stephen stich. from folk psychology to cognitive science: the case against belief (cambridge, ma: mit press, ), – . . paul churchland, matter and consciousness: a contemporary introduc- tion to the philosophy of mind (cambridge, ma: mit press, ), . . richard rorty, “mind- body identity, privacy, and categories,” review of metaphysics : ( ): . . jerry fodor, “is science biologically possible?” in naturalism defeated? essays on plantinga’s evolutionary argument against naturalism, ed. james beilby (ithaca: cornell university press, ), , , emphasis fodor’s. . peter unger, all the power in the world, (new york: oxford university press, ). . daniel dennett, “facing backwards on the problem of consciousness,” in explaining consciousness—the “hard problem,” ed. jonathan shear (cam- bridge, ma: mit press, ), , emphasis dennett’s. . carl sagan, cosmos. (new york: random house, ), . . some philosophers think that the principle of the indiscernability of identicals runs into serious problems in the context of beliefs. to take the usual notes to pages – example: you may know that the masked man robbed the bank, yet you do not know that your father robbed the bank. supposedly, there is something true of your father, but (alas) it may turn out that the masked man is your father. the principle of the indiscernability of identicals is not violated, however. imagine that your father is the masked robber. when you know that the masked man robbed the bank, the person who robbed the bank has the property of being rec- ognized by you, the witness, as well as the property of being your father, though you do not yet recognize this additional, distinct property. given the identity (robber = father), it remains the case that whatever is true of the one is true of the other: to pick out your father in a police lineup is to pick out the robber, to lock up your father in prison is to lock up the robber, and so on, even if not everyone grasps the identity. . colin mcginn, the problem of consciousness (oxford: blackwell, ), – . . richard swinburne, the evolution of the soul (oxford: clarendon press, ), . . daniel von wachter, “what kind of modality does the materialist need for his supervenience claim?” in irreducibly conscious, ed. a. batthyany and a. elitzur (heidelberg: universitätsverlag, ), . . ibid., , . . michael lockwood, “consciousness and the quantum worlds,” in con- sciousness: new philosophical perspectives, ed. q. smith and a. jokric (oxford: clarendon press, ), . . t. l. s. sprigge, the importance of subjectivity, ed. l. b. mchenry (ox- ford: clarendon press ), . . charles williams, the shadows of ecstasy (london: faber and faber, ), – . . the use of a zombie thought experiment to challenge contemporary forms of materialism was first employed by david chalmers. for an erudite over- view of the literature, see daniel n. robinson, consciousness and mental life (new york: columbia university press, ). . daniel dennett, brainstorms: philosophical essays on mind and psychology (montgomery, vt: bradford books, ), – . . georges rey, contemporary philosophy of mind (oxford: blackwell, ), , emphasis rey’s. . dennett in blackmore, conversations on consciousness, . . dennett, consciousness explained, , emphasis dennett’s. . paul churchland, the engine of reason, the seat of the soul (cambridge, ma: mit press, ), . . ibid. . richard rorty, philosophy and the mirror of nature (oxford: blackwell, ), . . dennett, consciousness explained, . notes to pages – . ibid. . churchland, the engine of reason, . . ibid., . . ibid., . . bertrand russell, an outline of philosophy (london: routledge, ), . . noam chomsky, “naturalism and dualism in the study of language and mind,” international journal of philosophical studies ( ): . . though this is rarely noted, probably the first use of the term “material- ism” was in the s, by cambridge platonist henry more. . h. h. farmer, god and men (london: nisbet, ), – . . daniel dennett, breaking the spell: religion as a natural phenomenon (new york: viking press, ), . . ibid., . . dennett in blackmore, conversations on consciousness, , emphasis dennett’s. . john r. searle, the mystery of consciousness (new york: new york re- view of books, ), . . thomas nagel, “conceiving the impossible and the mind- body prob- lem,” philosophy ( ): – . . ibid., . . ibid., . chapter . selves and bodies . david chalmers, the conscious mind (oxford: oxford university press, ), . . barry stroud, “the charm of naturalism,” in naturalism in question, ed. mario de caro and david macarthur (cambridge, ma: harvard university press, ), . . john r. searle, mind: a brief introduction (oxford: oxford university press, ), . . some philosophers believe that there can be contingent identities, but usually these identities do not involve strict references. for example, barack obama is the forty- fourth president of the united states, but this is not a neces- sary relationship, because the forty- fourth president might have been john mc- cain. if materialism is true, however, then what we refer to as obama is strictly identical with what we refer to as his body. “the forty- fourth president of the united states” is a title that may be held by any number of people and is not a matter of strict reference. . gilbert ryle, the concept of mind (new york: barnes and noble, ), – . notes to pages – . ibid., , . . dennett, consciousness explained, . while few would ever accuse den- nett of wallowing in mystery, in an essay on the status of nonhuman animal mental life, he seems unenthusiastic about removing the mystery concerning animal intelligence: “but perhaps we really do not want to know the answers to these questions [about animal consciousness]. we should not despise the de- sire to be kept in ignorance—are there not many facts about yourself and your loved ones that you would wisely choose not to know? . . . learning all these facts would destroy my composure, cripple my attitude towards those around me. perhaps learning too much about our animal cousins would have a similarly poisonous effect on our relations with them.” while dennett suggests that learn- ing too much about animal minds might not be good, he also believes that we are underequipped philosophically to form a clear grasp of animal consciousness. see daniel dennett, “animal consciousness: what matters and why,” social research (fall ), available on the internet under the heading “dennett and animal consciousness.” . sallie mcfague seems to link self- body dualism with arrogance, econo- mism, anti- ecology, patriarchy, and so on. see, for example, her super, natural christians (minneapolis: fortress press, ). . i first defended integrative dualism in my conciousness and the mind of god (cambridge: cambridge university press, ). the view is further devel- oped in my “the virtues of embodiment,” philosophy : ( ): – . . see the illustration by taylor’s (and my) professor roderick chisholm, in richard taylor, metaphysics (englewood cliffs, nj: prentice hall, ), . . david rosenthal, “dualism,” in routledge encyclopedia of philosophy, , section . published online. . this is a point that has recently been advanced by derek parfit in his two- volume work on what matters (oxford: oxford university press, ). this line of reasoning may also be found in a range of other writers, including c. s. lewis, robert nozick, victor reppert, and stewart goetz. . see k. e. himma,“what is a problem for all is a problem for none: substance dualism, physicalism, and the mind- body problem,” american philo- sophical quarterly : (april ): – . . churchland, matter and consciousness, . . robert wald, general relativity (chicago: university of chicago press, ), . see also robin collins, “modern physics and the energy conserva- tion objection to mind- body dualism,” american philosophical quarterly : ( ): – . . w. d. hart, “unity and dualism,” in irreducibly conscious, ed. batthy- any and elitzur, . . richard swinburne, the coherence of theism (oxford: oxford university press, ), – . . for a detailed defense of this and other arguments for integrative dualism, see my articles: “sensibility and possibilia: a defense of thought experiments,” notes to pages – philosophia christi : ( ): – ; “naturalism and the mind,” in natural- ism: a critical analysis, ed. w. l. craig and j. p. moreland (new york: routledge, ); “possibilities in philosophy of mind,” philosophy and phenomenological research : ( ): – ; “animals, brains, and spirits,” faith and phi- losophy : (october ): – ; and also my consciousness and the mind of god. . peter van inwagen, god, knowledge, and mystery: essays in philosophical theology (ithaca: cornell university press, ), . . for a detailed defense of this reply to van inwagen, see my “sensibility and possibilia: a defense of thought experiments.” . bernard williams, problems of the self (cambridge: cambridge univer- sity press, ), – . . this argument is developed by alvin plantinga in “materialism and christian belief,” in persons: human and divine, ed. peter van inwagen and dean zimmerman (oxford: clarendon press, ), – . . søren kierkegaard, works of love, trans. howard v. hong and edna h. hong (london: wm. collins sons & co., ), . . someone may object: consider the thesis that persons are modes of something greater, such as waves on the sea. couldn’t a person, like a wave, have sufficient distinctness to account for our sense that we love individuals? possibly, though a wave has no independence of the water that makes it up. if persons are like a movement of water, rather than substantial individuals, it is hard to see how they would have any center or focus or selfhood. what would self- awareness be like in the view that you are a mode of a body? we can speak about waves having causal effects, such as the wave went over the seawall. but the wave is only an extension of the body of water itself. . benjamin whichcote, aphorisms, cited by ernst cassirer in the platonic renaissance in england, trans. j. p. pettegrove (austin: university of texas press, ), . . paradise lost, book . the idea that the mind or soul creates or gives shape to hell is also hinted at in christopher marlowe’s play doctor faustus, in the famous line by the devil mephastophilis, who tells faustus that, despite appear- ances, mephastophilis himself is not free of hell: “why this is hell, nor am i out of it” ( . – ). chapter . some big pictures . sterry, “a discourse of the freedom of the will,” in cambridge platonist spirituality, ed. taliaferro and teply, – . . for the record, i believe that hobbes was (as he claimed) a theist, and so in that respect he is not the dennett of the eighteenth century. hobbes thought that god was a form of matter. he was suspicious of consciousness, however, and promoted a materialist, mechanistic model of the cosmos. notes to pages – . matthew bagger, religious experience, justification, and history (cam- bridge: cambridge university press, ), . . ibid., . . kai nielsen, naturalism and religion (amherst, ny: prometheus books, ), . . ronald w. hepburn, christianity and paradox (london: watts, ), . . gareth moore, believing in god: a philosophical essay (edinburgh: t. & t. clark, ), . . jan narveson, “god by design?” in god and design, ed. n. manson (london: routledge, ), – . . ibid., . . brian o’shaughnessy, the will (cambridge: cambridge university press, ), :xvii. . leopold studenberg, consciousness and qualia (philadelphia: john ben- jamins publishing, ), . . colin mcginn, the problem of consciousness: essays towards a resolution (cambridge, ma: wiley- blackwell, ), . . richard dawkins, the god delusion (boston: houghton mifflin, ), . . i borrow my subheading for this section from one of the great books in muslim philosophy, the incoherence of the incoherence, written in the twelfth century by ibn rushd as a response to al- ghazali’s attack on philosophy called the incoherence of the philosophers. . keith ward, why there almost certainly is a god (oxford: lion, ), , . . timothy o’connor, theism and ultimate explanation (oxford: black- well, ), , . . john r. searle, the re- discovery of the mind (cambridge: cambridge university press, ), , (his emphasis). . christian theologians have long noted that scriptural language of god is imperfect because of our limitations. consider, for example, john chrysostom’s reference to condescension and weakness: “do you see how all things were cre- ated by a word? but let us see what it says afterwards about the creation of man: ‘and god shaped man.’ see how, by means of a condescension of terms employed for the sake of our weakness, it teaches at the same time both the manner of creation and its diversity or variety, so that, speaking in human terms, it indicates that man was shaped by the very hands of god, even as another prophet says: ‘your hands created me and shaped me.’ ” from john chrysostom, “homilies in genesis,” in the faith of the early fathers, ed. jurgens, : . . a further defense of this thesis may be found in the treatment of hume and kant in my evidence and faith. . see the introduction, note . . i. a. richards, the philosophy of rhetoric (new york: oxford university press, ), . notes to pages – . some of these cases are addressed in my contemporary philosophy of reli- gion (malden, ma: blackwell, ). . see j. l. mackie’s the miracle of theism (oxford: clarendon press, ), chap. . . for a further exposition, see brian leftow, “necessity,” in the cambridge companion to christian philosophical theology, ed. c. taliaferro and c. meister (cambridge: cambridge university press, ). . o’connor, theism and ultimate explanation, . . augustine, the trinity, in the faith of the early fathers, ed. jurgens, : . . daniel dennett, darwin’s dangerous idea (new york: simon & schuster, ), . . r. dawkins, the god delusion (new york: houghton mifflin, ), – . . jil evans, “re- imagine the galapagos,” in turning images in philosophy, science, and religion: a new book of nature, ed. c. taliaferro and j. evans (ox- ford: oxford university press, ), . . ibid. see also thomas nagel, “dawkins and atheism,” in his secular philosophy and the religious temperament: essays – (oxford: oxford university press, ), – , especially . . daniel dennett, breaking the spell (new york: viking, ), . . see chap. , note . . see darwin’s treatment of races and extinction in the descent of man. . julian of norwich, the revelations of divine love, trans. elizabeth spear- ing (london: penguin books, ), . . jacques maritain, integral humanism, ed. otto bird, trans. joseph w. evans, the collected works of jacques maritain, vol. (notre dame: university of notre dame press, ), . . ernest hemingway, the sun also rises (new york: simon & schuster, ), . while citing hemingway’s novel to highlight resignation to the loss of a relationship, some christian philosophers and theologians have used our sense of longing for completion (joy, happiness, home) as part of an extended argument that we are made for such a completion. in various places, c. s. lewis has entertained what has been called the argument from desire, and j. r. r. tolkien addresses this argument in his excellent essay “on fairy- stories.” the philosophical theologian ralph harper wrote an extraordinary study of long- ing in his nostalgia: an existential exploration of longing and fulfilment in the modern age (cleveland: press of western reserve university, ). in this genre, one of my favorite names for any argument is the “factory girl,” as developed by cardinal john henry newman. he imagines a factory girl who is thoroughly miserable but reasons that there has to be something better, a god who can and will bring healing. newman argues that this can be a natural, legitimate inference. for an exposition and defense, see “cardinal newman’s ‘factory girl’ argument,” proceedings of the catholic philosophical association ( ): – . notes to pages – chapter . some real appearances . confessions of saint augustine, trans. pine- coffin, book , pp. – . . in goethe’s faust ii the angels save the tragic “hero”: “he who exerts himself in constant striving, / him we can save.” this may seem more like a valo- rization of ambition than seeking rest in the moment, but both faust i and ii are severe critiques of worldly ambition and glory. moreover, in the scene of faust’s redemption, there is a restoration of that which is lost. the woman whom he had exploited and (indirectly) killed, gretchen, is the one who welcomes faust to a blessed afterlife. in the end, it is faust’s shedding his exhausting vainglory and resting in a fair moment that opens him up to eternity or, as goethe puts it, to “the eternal feminine.” . william wordsworth, selections from william wordsworth, ed. a. h. thompson (cambridge: cambridge university press, ), . . richard bucke, spiritual competency resource center, http://www.spiri- tualcompetency.com/ (september ), – . . leslie weatherhead, “the christian agnostic,” quoted in alistair c. hardy, the spiritual nature of man: a study of contemporary religious experience (oxford: clarendon press, ), . . see, for example, william alston, perceiving god (ithaca: cornell uni- versity press, ); caroline frank, the evidential force of religious experience (oxford: clarendon press, ); jerome gellman, experience of god and the ra- tionality of theistic belief (ithaca: cornell university press, ); gary gutting, religious belief and religious skepticism (notre dame: university of notre dame press, ); richard swinburne, the existence of god, rev. ed. (oxford: oxford university press, ); william wainwright, mysticism: a study of its nature, cognitive value and moral implications (madison: university of wisconsin press, ); keith yandell, the epistemology of religious experience (cambridge: cam- bridge university press, ); h. d. lewis, our experience of god (new york: macmillan, ); and nelson pike, mystic union (ithaca: cornell university press, ). . see the excellent book the rainbow of experiences, critical trust, and god: a defense of holistic empiricism by kai- man kwan (london: continuum, ). . see, for example, john earman, hume’s abject failure: the argument against miracles (oxford: oxford university press, ). . hume, “of miracles,” in an enquiry concerning human understanding, nd ed., ed. l. a. selby- bigge (oxford: clarendon press, ), – . . ibid., – . . david hume, “of national characters,” in the philosophical works of david hume, vol. , ed. t. h. green and t. h. grose (london: longmans, ), . unfortunately, hume’s position was not merely of academic inter- est. hume’s authority is appealed to and defended in such pro- slavery texts as the anonymously authored personal slavery established by the suffrages of notes to pages – custom and right reason ( ), richard nisbet’s slavery not forbidden by scripture ( ), and edward long’s three- volume racist text the history of jamaica. and some anti- slavery works took issue with hume: james beattie’s essay on the nature and immutability of truth ( ), and james ramsey’s an essay on the treatment and conversion of african slaves in the british sugar colo- nies ( ). . sterry, “a discourse of the freedom of the will,” in cambridge platonist spirituality, ed. taliaferro and teply, . . david brian davis, the problem of slavery in western culture (ithaca: cornell university press, ), . culverwel as well as whichcote was a cam- bridge platonist. . samuel fleishacker, divine teaching and the way of the world (oxford: oxford university press, ), . . ibid., . . wesley wildman, science and religious anthropology (burlington, vt: ashgate, ), . . a brief word on behalf of skepticism: historically, skeptics about per- ception have had a decent track record ethically. in ancient greece, few people doubted that slavery was a natural condition except for the skeptic diogenes of sinope (fourth century bce). between plato and aristotle, plato was the more skeptical about the reliability of perception; plato thought that we can often be victims of illusions. and yet it was plato who had a higher view of women as potential political leaders than his contemporaries. . wesley wildman, religious and spiritual experiences (cambridge: cam- bridge university press, ), . . ibid., . . for a classic study of religious experience, see evelyn underhill, mysti- cism (mineola, ny: dover publications, ), first published in . . j. l. schellenberg, the wisdom to doubt: a justification of religious skep- ticism (ithaca: cornell university press, ), – . . ibid., – . . see jeffrey russell, inventing the flat earth: columbus and modern his- torians (new york: praeger, ). . see underhill, mysticism. she offers a comprehensive, critical account of religious experience involving a broad range of cases. . schellenberg, the wisdom to doubt, . . for a compelling case that one can observe oneself as an individual, sub- stantial being, see roderick chisholm, “the direct awareness of the self,” in his person and object: a metaphysical study (la salle, il: open court, ). . it is hard to see how neurobiology could undermine religious experience without undermining much else. for a superb collection of essays on this topic, see the believing primate: scientific, philosophical and theological reflections on the origin of religion, ed. j. schloss and m. murray (oxford: oxford university press, ). notes to pages – . for a detailed look at the arguments pro and con this objection and reply, see ibid., and j. barrett, why would anyone believe in god? (walnut creek, ca: alta mira press, ). . while i find such exchanges unhelpful in general, there is an excellent essay, “is religion evil?” by alister mcgrath that effectively argues that dawkins’s claims about ethical atheism are naïve, in god is great, god is good: why believ- ing in god is reasonable and responsible, ed. w. l. craig and c. meister (downers grove, il: intervarsity press, ). . see kai man kwan, “the argument from religious experience,” in the blackwell companion to natural theology, ed. w. l. craig and j. p. moreland (ox- ford: wiley- blackwell, ). . for an excellent resource on recorded religious experiences, see timothy beardsworth, a sense of presence (oxford: religious experience research unit, ). for two engaging and thorough, sympathetic treatments of the evidential value of religious experience, see john hick, the fifth dimension (oxford: one world press, ), and his the new frontier of religion and science (new york: macmillan, ). . peter donovan, interpreting religious experience (new york: seabury press, ), . . norman kemp smith, “is divine existence credible?” in religion and understanding, ed. d. z. phillips (new york: macmillan, ), . of course, to a naturalist convinced of the falsehood of theism, living with the kind of open- ness to the presence of god commended by donovan would not be like my examples involving animals and children, but more like an astrologer being open to discovering human destiny by studying the stars. donovan’s point and the position defended here are based on the thesis that theism, unlike astrology, is a live, credible, alternative to naturalism. . r. g. collingwood, “the devil,” in religion and understanding, ed. phillips, . . jean- paul sartre, nausea, trans. l. alexander (new york: new direc- tions, ), – . sartre won and then turned down the nobel prize for literature for nausea. chapter . is god mad, bad, and dangerous to know? . i once presented a paper entitled “the world is not enough” at several schools, arguing that an all- good god ought to annihilate creation. it is only due to god’s goal of mercifully redeeming the wicked that god does not do what god ought to do if he acted on justice alone. on this view, divine mercy is in explicit tension with divine justice. i still believe this to be a coherent position and com- patible with god’s goodness as opposed to justice, but i will not defend this thesis here. notes to pages – . erasmus, “concerning the immense mercy of god,” in the essential erasmus, trans. j. dolan (new york: new american library, ), . . parfit, on what matters, : . . c. a. campbell, in defense of free will (london: george allen and unwin, ), . . parfit, on what matters, : . . none of the characters in my story are real or resemble people i know. . campbell, in defense of free will, . . gregory of nyssa, the life of moses, trans. a. j. malherbe and e. fergu- son (new york: paulist press, ), : . . sterry, “a discourse of the freedom of the will,” . . ibid. . catherine of siena, the dialogue, trans. s. nofke (new york: paulist press, ), – . . goodness might well be seen as built into the animal world as well. george macdonald once suggested: “the bliss of the animals lies in this, that, on their lower level, they shadow the bliss of those—few at any moment on the earth—who do not ‘look before and after and pine for what is not’ but live in the holy carelessness of the eternal now.” george macdonald: an anthology, ed. c. s. lewis (london: geoffrey bles, ), . . holmes rolston iii, “does nature need to be redeemed?” in philosophy of religion: an anthology, ed. c. taliaferro and p. griffiths (oxford: blackwell, ), – . . peter van inwagen, the problem of evil (notre dame: university of notre dame press, ); taliaferro and griffiths, philosophy of religion: an an- thology, . . see michael murray, nature red in tooth and claw (oxford: oxford university press, ). . van inwagen, the problem of evil, . . marilyn mccord, “horrendous evils and the goodness of god,” in the problem of evil, ed. marilyn mccord adams and robert merrihew adams (ox- ford: oxford university press, ), . . john hick, evil and the god of love (san francisco: harper and row, ), (emphasis mine). . “critique by john hick,” in encountering evil, ed. s. t. davis (london: leiden, ), . . d. cohn- sherbok, “jewish faith and the holocaust,” religious studies ( ): – . . for an excellent treatment of the issues, see richard creel, “divine im- passibility,” in the blackwell companion to philosophy of religion, ed. taliaferro, draper, and quinn. i defend passibilism in my consciousness and the mind of god. . alvin plantinga, “self- profile,” in alvin plantinga, ed. james e. tomber- lin and peter van inwagen (dordrecht: reidel, ), . notes to pages – . richard swinburne, “the problem of evil,” in contemporary philosophy of religion, ed. s. cahn and d. shatz (oxford: oxford university press, ), . . fyodor dostoyevsky, the brothers karamazov, trans. constance garnett, rev. ralph e. matlaw (new york: norton, ), . . technically, schellenberg’s argument is aimed at christian theism and does not support atheism per se. if his argument succeeds, then there may still be a god, just not the god envisioned in christian tradition. . schellenberg, the wisdom to doubt, . . ibid., . . a vigorous tradition in christian spirituality holds that in the soul’s jour- ney to god there are times of great aridity and a painful experience of god’s with- drawal. perhaps the greatest student and writer on this process is saint john of the cross ( – ): “such souls will likely experience what is called ‘the dark night of the soul.’ the ‘dark night’ is when those persons lose all the pleasure that they once experienced in their devotional life. this happens because god wants to purify them and move them on to greater heights.” from the dark night of the soul, in devotional classics, ed. r. j. foster and j. b. smith (new york: harper- collins, ), . john of the cross even expresses the sense of god’s presence and absence in terms of maternal care: “after a soul has been converted by god, that soul is nurtured and caressed by the spirit. like a loving mother, god cares for and comforts the infant soul by feeding it spiritual milk. such souls will find great delight in this stage. they will begin praying with great urgency and perse- verance; they will engage in all kinds of religious activities because of the joy they experience in them. but there will come a time when god will bid them to grow deeper. he will remove the previous consolation from the soul in order to teach it virtue and prevent it from developing vice.” ibid. . a. padgett, “review of divine hiddenness and human reason by j. l. schellenberg,” philosophical books : ( ): . . dawkins, the god delusion, . . françois fénelon, “a will no longer divided,” in devotional classics, ed. foster and smith, . . dawkins, the god delusion, . . for an excellent book that replies to many of the moral objections to god in the bible, see paul copan, is god a moral monster? making sense of the old testament god (grand rapids: baker books, ). . richard swinburne, the existence of god (oxford: clarendon press, ), . . hick, the fifth dimension, . . hick, evil and the god of love, . . keith ward, “sentient afterlife,” in animals and christianity, ed. a. linzey and t. regan (new york: crossroads, ), – . notes to pages – chapter . redemption and time . the classical articulation of forgiveness in terms of renouncing resent- ment can be found in two sermons by bishop butler, “upon resentment” and “upon forgiveness of injuries,” sermons viii and ix, in the works of joseph but- ler, vol. , ed. w. e. gladstone (oxford: clarendon press), – . for a con- temporary position in the tradition of butler, see charles griswold, forgiveness: a philosophical exploration (cambridge: cambridge university press, ). . during the french revolution, in dickens’s tale, the character sydney carton heroically exchanges places with charles darnay in prison, thus allowing charles to escape. sydney is executed in his place. . for an overview of the christus victor tradition, see gustav aulen, christus victor: a historical study of the three main types of the idea of atonement, trans a. g. hebert (eugene, or: wipf & stock, ). . anselm, “cur deus homo,” in st. anselm’s basic writings, trans. s. n. deane (chicago: open court, ), . . another concept in addition to adoption that has been used to capture the saving union (atonement) between god and the soul is that of marriage. as a professor at st. olaf college (affiliated with the lutheran tradition), i feel obliged to cite the good martin luther on this other metaphor- saving image: “by the wedding ring of faith [christ] shares in the sins, death, and pains of hell which are his bride’s. as a matter of fact, he makes them his own and acts as if they were his own and as if he himself had sinned; he suffered, died, and descended into hell that he might overcome them all. . . . thus the believing soul by means of the pledge of its faith is free in christ, its bridegroom . . . and is endowed with the eternal righteousness, life, and salvation of christ its bridegroom.” freedom of a christian, trans. w. a. lambert and h. j. grimm, in luther’s works [american edition], vol. , career of the reformer (philadelphia: fortress press, ), . . stephen davis, christian philosophical theology (oxford: oxford uni- versity press, ), . . ibid., . . for further work on shakespeare and redemption, see my “a shakespear- ean account of redemption,” in the psychology of character and virtue, ed. c. s. titus (arlington, va: institute for the psychological sciences, ). . clement, “letter to the corinthians,” in the faith of the early fathers, ed. jurgens, : – . . cited by john baillie, our knowledge of god (london: oxford univer- sity press, ), . . william law, a serious call to a devout and holy life, ed. p. g. stanwood (new york: paulist press, ), . . philip quinn, “abelard on atonement: nothing unintelligible, arbi- trary or immoral about it,” in trinity, incarnation, and atonement: philosophical and theological essays, ed. ronald j. feenstra and cornelius plantinga, jr. (notre dame: university of notre dame press, ), . notes to pages – . richard purtill, reason to believe (san francisco: ignatius press, ), – . . irenaeus, “against heresies,” in the faith of the early fathers, ed. jurgens, : . . for an excellent overview of the orthodox affirmation of the goodness of the body over against gnosticism, see margaret r. miles, fullness of life: histori- cal foundations for a new asceticism (philadelphia: westminster press, ). chapter . eternity in time . st. gregory of elvira, “homilies on the books of sacred scripture,” in the faith of early fathers, ed. jurgens, : . . saint augustine, augustine of hippo, selected writings, trans. mary t. clark (paulist press, ), . . jean leclercq, o.s.b, the love of learning and the desire for god, trans. c. misrahi (new york: fordham university press, ), . . there may also be this difference: if kris is a four- dimensionalist, then she believes that she is spread out over time. on this view, the whole of kris cannot be fully present to god at a given moment, but only a part (a time slice) of her life. still, kris might rightly claim that the whole of her life (past, pres- ent, and future) is present to god insofar as god is present to all creation at all times. . charles taylor, a secular age (cambridge: harvard university press, ), . . ibid., . . boethius, the consolation of philosophy (new york: random house ), . . ibid., . . augustine, the city of god, trans. marcus dods (new york: random house, ), . . ibid., . . leo i, “sermons,” in the faith of the early fathers, ed. jurgens, : . . d. m. baillie, god was in christ (london: faber and faber, ), . . emil brunner, the mediator (philadelphia: westminster press, ), . . confessions of saint augustine, trans. pine- coffin, book , p. . . ibid., book , . . gregory of nazianz, “orations,” in the faith of the early fathers, ed. jurgens, : . . bonaventure, the soul’s journey to god, the tree of life, and the life of st. francis, trans. e. cousins, classics of western spirituality (new york: paulist press, ), . . gregory of nyssa, the life of moses, . . notes to pages – . charles williams, descent into hell (grand rapids: eerdmans, ), . . marlowe christopher, dr. faustus (from the quarto of ), . . – . . ibid., . . – . . as an aside, i note that it is not the case that all virtues have this diffuse character. one might love courage, and yet this love is not in itself brave. . kierkegaard, works of love, . . d. z. phillips, the problem of evil and the problem of god (minneapolis: fortress press, ), . . origen, dialogue with heraclides, as cited in margaret r. miles, fullness of life: historical foundations for a new asceticism (philadelphia: westminster press, ), . . johannes tauler, sermons, trans. m. shrady (new york: paulist press, ), . chapter . glory and the hallowing of domestic virtue . g. k. chesterton, collected works of g. k. chesterton, vol. , chesterton on dickens, ed. alzina stone dale (san francisco: ignatius press, ), . . a. e. taylor, the faith of a moralist (london: macmillan, ), – . . eric auerbach, mimesis: the representation of reality in western litera- ture, trans. w. r. trask (princeton: princeton university press, ), – . . brother lawrence, from the practice of the presence of god, in devotional classics, ed. r. j. foster and j. b. smith (new york: harperone, ), – . . jean pierre de caussade, from the sacrament of the present moment, in devotional classics, ed. foster and smith, . . sor juana inés de la cruz: selected writings, trans. p. k. rappaport (new york: paulist press, ), . . coleridge rightly pointed out the hebrew roots of recognizing the hal- lowed nature of all creation: “in the hebrew poets each thing has a life of its own and yet they are all one life. in god they move and live and have their being; not had, as the cold system of newtonian theology represents, but have.” coleridge, cited by auden in the complete works of w. h. auden; prose, ed. e. mendelson (princeton: princeton university press, ), : . see also thomas howard, splendor in the ordinary (wheaton, il: tyndale house, ). . dante alighieri, la vita nuova: poems of youth, trans. barbara reynolds (london: penguin, ), . . ibid. as a humorous aside, i note that the dante- beatrice story provides us a reason why more of us should offer a “sweet greeting” to frustrated writers; the world might have more epic poetry as a result. . dante, paradise, trans. sayers and reynolds, . – (p. ). . charles williams, the figure of beatrice: a study in dante (london: faber and faber, ), – . notes to pages – . for this account and quotation, see http://www.catholic- pages.com/ saints/st_maximilian.asp. . ibid. . r. s. thomas, laboratories of the spirit (boston: macmillan, ), . . c. s. lewis, reflections on the psalms (new york: harcourt brace, ), – . . see stephen t. davis, christian philosophical theology (oxford: oxford university press, ), especially chap. , “periochoretic monotheism”; and richard swinburne, the christian god (oxford: oxford university press, ). . cudworth, “a sermon preached before the honorable house of com- mons,” in cambridge platonist spirituality, ed. taliaferro and teply, . . clement, “letter to the corinthians,” in the faith of the early fathers, ed. jurgens, : . . richard of st. victor, the twelve patriarchs; the mystical arts; book three of the trinity, trans. g. a. zinn (new york: paulist press, ), – . . john climacus, the ladder of divine ascent, trans. c. luibheid and n. russell (new york: paulist press, ), . i n d e x absolute death, , absolute life, – , academic/scientific explanations of religious experience, – adams, marilyn, adoption model of redemption, afterlife, , , , , – , – agnosticism, , , , alexander the great, alston, william, animals bliss of eternal now of, n intelligence/minds of, , , n suffering of, – anselm of canterbury, , , st. anthony the hermit, apology (plato), n aquinas. see thomas aquinas aristotle, , n armstrong, d. m., – atheism, – , , , , n , n athenagoras of athens, atonement or reconciliation, , , , , , – , , n auden, w. h., – , , , , , auerbach, eric, – augustine of hippo the city of god, – confessions, , , dualism and, , on eternity, time, and transience of worldly values, , – on friendship, vii–viii on god’s newness, on god’s super-reality, on omnipresence of god, , religious experience of, , , , , , bagger, matthew, baillie, d. m., – barth, karl, basic action, concept of, beattie, james, n bernard of clairvaux, bielecki, jerzy, black africans and other nonwhites, hume on intelligence of, – , – n blackmore, susan, blake, william, bodegón painting, – bodies and material world, viewed as evil, , body-switching, – boethius, , , , – , bonaventure, – , , , borgowiec, bruns, boundless life, god as essence of, – , n breaking the spell (dennett), index “the bright field” (r. s. thomas), – brother lawrence, the brothers karamazov (dostoyevsky), bruner, emil, bucke, richard, , , , buddhism, , – , butler, joseph, n cambridge platonism, – absolute life, concept of, – , bodegón painting as visual expression of, – consciousness, personal identity, and the self in, – defined and described, – on different worlds, eternity and time, concepts of, – evil, problem of, , on freedom and grace, – golden cord, concept of, – , love in, – , – multiplicity of reasons for belief in god in, plato, platonism, and christianity, on religious experience, – , secular naturalism and, – theism, coherence of, , campbell, c. a., , , catherine of siena, celsus, chalmers, david, , chanson de roland, chariots of the gods (von däniken), charlemagne, charles vii (king of france), chesterton, g. k., – chisholm, roderick, , , n chomsky, noam, , , christian platonic tradition boethius and, christianity and, divine love of god in, glory of god and hallowing of domestic virtues in, transience of worldly values in, see also cambridge platonism; plato and platonism christianity and paradox (hepburn), christus victor model of redemption, – , churchland, patricia, , , , churchland, paul, , – , – , , – , , – the city of god (augustine), – clement of alexandria, , , the cloud of unknowing, , , cohn-sherbok, d., coleridge, samuel, , n collingwood, r. g., – colossians : , : , a comedy of errors (shakespeare), complexity/simplicity, naturalist critique of theism based on, , – the concept of mind (ryle), , confessions (augustine), , , consciousness, personal identity, and the self beginning philosophical inquiry with, – cambridge platonism and, – integrative dualism, arguments for, – observation of self as individual and substantial being, origins of, – radical materialism rejecting, , – , – , time, personal identity over, corinthians , : , index corinthians : , , : , crane and skyhook analogies for naturalism and theism, – creation, ethics of, – , – critical trust, concept of, – cudworth, ralph, , , culverwel, nathaniel, cymbeline (shakespeare), dante, , , , , , , – dark night of the soul, , n davis, david brian, – davis, stephen, – dawkins, richard, , , – , , – , n de caussade, jean-pierre, delphi, oracle at, democritus of abdera, dennett, daniel on animal intelligence, n breaking the spell, dualism and, , , , hobbes and, , n materialism and, – , – , – , – skyhook and crane analogies for theism and naturalism, – theistic responses to naturalist critique, values of, – denys the areopagite, descartes, rené, , – , descent into hell (williams), – desire, argument from, n deuteronomy : , dialogue (catherine of siena), dickens, charles, , – dimitri of rostov, diogenes of sinope, n a discourse of the freedom of the will (sterry), disembodiment, – divine comedy (dante), , , divine mercy and divine justice, tension between, n the divine names (denys the areopagite), doctor faustus (marlowe), – , n domestic virtues, hallowing of, , – donovan, peter, , n doré, gustave, dostoyevsky, fyodor, dualism, – cartesian, – critiques of, – different uses of term, of good and evil, , materialism versus, – , , , – see also integrative dualism ecclesiastes : , : , eliminativism, , – , , – , eliot, george, eliot, t. s., the engine of reason (paul churchland), , , “enthusiasm,” seventeenth century concerns about, ephesians : , erasmus, desiderius, – eternity, – animals, bliss of eternal now of, n atonement or reconciliation in, – , boethius on, , – , boundless life, god as essence of, – , n concepts of, – index eternity (continued) fountain or well, eternal life as, – glory of god and, , – omnipresence of god in, – transience of worldly values and, – ethics of creation and problem of evil, – , – evans, jil, – evil, problem of, – bystander view of god and, – , cambridge platonism and, , divine mercy and divine justice, tension between, n dualist approach to, , ethics of creation and, – , – freedom and, , – golden cord, evil as type of, , – innocent victims, – invisible or hidden god and, – justification of evil versus redemption, – as key element in christian sense of the divine, – loving god and, – material world and bodies viewed as evil, , suffering of god and, – vices of god argument and, – evolutionary theory, – , – explanatory weakness of theism, naturalist critique of, – , – extra-universal being, naturalist critique of, – , – “factory girl” argument, n a farewell to arms (hemingway), , farmer, h. h., – faust (goethe), , , n fénelon, françois, the figure of beatrice (williams), fleishacker, samuel, – flew, antony, fodor, jerry, folk psychology, concept of, , , forgiveness, concepts of, – foster, john, fountain or well, eternal life as, – four quartets (eliot), freedom evil, problem of, , – omniscience of god and, – galatians : , : , genesis , st. george and the dragon, – al-ghazali, n glory of god, – eternity and, , – hallowing of domestic virtues and, , – pagan glory (kleos) versus, – , – , gnosticism, the god delusion (dawkins), god was in christ (baillie), goethe, johann wolfgang von, , , , n goetz, stewart, , golden cords concept of, – , consciousness, appreciation of nature of, eternal god, christian experience of, problem of evil and, , – religious experience as, , index romantic love as path to divine love, – self-offering as, – serenity, in moments of, – grace and freedom, – gravity as manifestation of love, – , , , , , – , , – gregory of elvira, gregory of nazianzus, gregory of nyssa, , hacker, peter, hamlet (shakespeare), hannay, alistair, hart, w. d., , hebrews : , hemingway, ernest, , , , , n hepburn, ronald, – , herodotus, hick, john, – , – hidden or invisible god arguments, , – , – hinduism, , , , history (herodotus), hobbes, thomas, , n holocaust, – , – homer, hume, david, , , – humility, ibn rushd, n the idea of the holy (otto), identity, personal. see consciousness, personal identity, and the self identity relationships, materialist problem of, – , , – n , n iliad (homer), impassibilism, incarnation, – , indiscernability of identicals, – , , – n , n indwelling, divine, – inferno (dante), inklings, n innocent victims and the problem of evil, – integrative dualism, , – arguments against, – arguments for, – defined and described, – different worlds in, – love and, – invisible or hidden god arguments, , – , – irenaeus of lyon, – islam, , , , , n jackson, frank, james, william, , jealousy of god, – “jerusalem” (blake), jews and judaism, , , , , , – , , , , , joan of arc, john chrysostom, n john climacus, john of the cross, n john’s gospel : , , : , , : , : , julian of norwich, – julius caesar, juridical or anselmian model of redemption, – justice, divine, and divine mercy, tension between, n kant, immanuel, , , n kenny, anthony, kierkegaard, søren, , – kleos (pagan glory), – , – , index kolbe, maximilian, – kwan, kai-man, law, william, learned ignorance (nicholas of cusa), leclerq, jean, – leonidas, leviticus , lewis, c. s., , , n libertarian agency, – “the lion and the unicorn” (orwell), locke, john, lockwood, michael, – long, edward, n love auden’s experience of, – , in cambridge platonism, – , – in the cloud of unknowing, divine love of god in christian platonic tradition, eternal glory of god and, – evil, problem of, and existence of loving god, – gravity as manifestation of, – , , , , , – , , – integrative dualism and, – jealousy of god and, – materialism and, – , , romantic love as golden cord to divine love, – self-love, love, love, love and other essays: light reflections on love, life, and death (taliaferro), the love of learning and the desire for god (leclerq), – luther, martin, , n macbeth (shakespeare), macdonald, george, n mackie, j. l., maritain, jacques, – marlowe, christopher, – , n marriage model of redemption, n martin, michael, material world and bodies, viewed as evil, , materialism, – defined and described, – dualism versus, – , , , – identity relationships, problem of (indiscernability of identicals), – , , – n , n inadequacies of, – love and, – , , origins of the mental, problem of, – platonism and, presented as scientific thesis, – radical materialism, consciousness and the mental rejected by, , – , – , as religion, of secular naturalism, – , matter and consciousness (paul churchland), matthew’s gospel : – , : , mcfague, sally, n mcginn, colin, , mcgrath, alister, n measure for measure (shakespeare), – memento mori, the mental. see consciousness, personal identity, and the self mercy, divine, and divine justice, tension between, n merricks, trenton, , metaphysics (richard taylor), middlemarch (eliot), index milton, john, miracles, – , modes, persons as, n monica (mother of augustine), , , , monism, moore, gareth, , , – moral theology antecedent to mysticism, – more, henry, , n much ado about nothing (shakespeare), , muslims. see islam mysticism, moral theology antecedent to, – nagel, thomas, , , – narveson, jan, – , – naturalism. see secular naturalism naturalism (taliaferro and goetz), nature morta, nature, revelation as violation of laws of, , – nausea (sartre), near-death experiences, new atheists, newman, john henry, n nicholas of cusa, , nielsen, karl, , nietzsche, friedrich, nisbet, richard, n obes (out-of-body experiences), o’connor, timothy, – , old testament punishment in, vices of god argument based on, – omnipresence of god, – omniscience of god and human freedom, boethius on, – on the consolation of philosophy (boethius), , – oracles, ancient philosophical concerns about, origen, , orwell, george, o’shaughnessy, brian, , othello (shakespeare), otto, rudolph, out-of-body experiences (obes), oxford companion to philosophy, – padgett, alan, pagan glory (kleos), – , – , paradise lost (milton), paradiso (dante), parfit, derek, – , n pascal, blaise, passibilism, , peloponnesian war, perception, skepticism about reliability of, – , n pericles (shakespeare), personal identity. see consciousness, personal identity, and the self st. peter, betrayal of, philippians : , : , phillips, d. z., – phoenix, jesus as, – pickwick papers (dickens), plantinga, alvin, plato and platonism apology (plato), n dualism of plato, , on reliability of perception, n see also cambridge platonism; christian platonic tradition plotinus, pluralism, popkin, richard, n the practice of the presence of god (brother lawrence), index prelinguistic children, belief capabilities of, presentism, – principle of credulity/principle of charity, the problem of slavery in western culture (david brian davis), – punishment and redemption, – purtill, richard, , – quine, willard van orman, , , quinn, philip l., – radical materialism, , – , – , radical skepticism, – , n ramsey, james, n reconciliation or atonement, , , , , , – , , n the red and the black (stendhal), redemption, – adoption model of, anselmian or juridical model of, – atonement or reconciliation, , , , , , – , , n christus victor model of, – , forgiveness, resentment, repentance, and punishment, – incarnation and, – justification of evil versus, – marriage model of, n modern thought experiments regarding, – in shakespeare, – universalism, – reflections on the psalms (lewis), reincarnation, , reliability of perception, skepticism about, – , n religious experience, – of auden, – , , , , , of augustine and monica, , , , , , of bucke, , , , cambridge platonists on, – , critical trust of, – defining terms so as to make religious experience impossible, – “enthusiasm,” seventeenth century concerns about, openness to, – , – oracles, ancient philosophical concerns about, otto and schliermacher on, religious diversity and, , – scientific/academic explanations of, – shared versus private, of taliaferro, – , , theism and naturalism, debate between, , – unreliability argument regarding, – verification and radical skepticism, – , n as violation of laws of nature, , – of weatherhead, – , , of wordsworth, – , , , religious experience, justification, and history (bagger), repentance, – resentment, – revelation : , the revelations of divine love (julian of norwich), – revelatory experiences. see religious experience rey, george, – richard of st. victor, index richards, i. a., robinson, daniel, , rolston, holmes, iii, romans , : , : , romantic love as golden cord to divine love, – romeo and juliet (shakespeare), – rorty, richard, , rosenthal, david, russell, bertrand, ryle, gilbert, , – , , sagan, carl, , , sartre, jean-paul, – sayers, dorothy, schellenberg, john, , – , – , n schliermacher, friedrich, science and religious anthropology (wildman), scientific/academic explanations of religious experience, – scientific causes, naturalist critique of theism based on, , scientificalism, scientism, – searle, john, , , a secular age (charles taylor), – , secular naturalism, – cambridge platonism versus, – defined and described, – dualism and, skyhook and crane analogies, – theism critiqued by, , – theistic responses to, – values of, – the self. see consciousness, personal identity, and the self self-love, serenity, golden cords in moments of, – the shadows of ecstasy (williams), shakespeare, redemption in, – simplicity/complexity, naturalist critique of theism based on, , – skepticism, radical, – , n skinner, b. f., , skyhook and crane analogies for theism and naturalism, – slavery, – , , , – n , n smith, john, smith, norman kemp, socrates, , n song of songs, – sor juana inés de la cruz, , spartans, – sprigge, t. l. s., – stendhal, sterry, peter, – , , – stich, stephen, , , – still life painting, strawson, galen, , – , stroud, barry, studenberg, leopold, suffering of god, – , sufism, the sun also rises (hemingway), , , n swinburne, richard, – , – , , – a tale of two cities (dickens), , n taliaferro, charles, , , – , , , , – tatian the syrian, tauler, johannes, taylor, a. e., – taylor, charles, – , taylor, richard, – teilhard de chardin, pierre, – index theism, – defense of coherence of, defined and described, hidden or invisible god argument against, , – , – holocaust and, – mental, intentional causation as basic to, – naturalist critique of incoherence of, , – responses to naturalist critique, – skyhook and crane analogies, – values of, – vices of god argument against, – theodoric (king of the ostrogoths), thermopylae, battle of, theseus myth, – thomas aquinas, , thomas, r. s., – , , , – “tintern abbey” (wordsworth), – , to the lighthouse (woolf ), – , , , tolkien, j. r. r., , n the tree of life (bonaventure), – trinity, – twelfth night (shakespeare), the twelve patriarchs (richard of st. victor), underhill, evelyn, n , n ungar, peter, unique cosmos, ability to reason about, – , , universalism, – unreliability argument against religious experience, – values of theism and secular naturalism, – transience of worldly goods in face of divine eternity, – van inwagen, peter, , , – , – verification of religious experience, – vices of god argument, – virgil, vishnu, jesus viewed as avatar of, vitalism, von däniken, erich, von wachter, daniel, – wald, robert, walls, jerry, ward, keith, , weatherhead, leslie, – , , well or fountain, eternal life as, – wheatley, phillis, whichcote, benjamin, , , wildman, wesley, , , williams, bernard, – williams, charles, , , – , williams, francis, – the winter’s tale (shakespeare), wittgenstein, ludwig, woolf, virginia, – , , , wordsworth, william, – , , , , works of love (kierkegaard), zoroastrian dualism, c h a r l e s t a l i a f e r r o is professor of philosophy at st. olaf college. “charles taliaferro is a first-rate philosopher. the golden cord: a short book on the secular and the sacred is truly original in that it picks up the debate about the viability of secular naturalism and brings it into conversation with cambridge platonism and with ascetic theological considerations. it will be of interest to students and scholars in philosophy, popular culture, and spirituality.” — w i l l i a m a br a h a m , southern methodist university “in the golden cord, charles taliaferro again proves to be not only a careful and insightful thinker, but also a wonderfully enjoyable—and widely read—writer. as he tackles big questions of life, he engages the relevant philosophers of our time as well as literary figures from w. h. auden and virginia woolf to ernest hemingway, george orwell, teilhard de chardin, and j. r. r. tolkien. as a guide, taliaferro does not merely wander the edges; he plunges into core issues of our human existence, inviting his readers to wade into the great sea of divine love.” — m at t h e w d i c k e r s o n , author of the mind and the machine: what it means to be human and why it matters “charles taliaferro has written a thought-provoking, original work that succeeds in throwing some of the central tenets of naturalism into question. he has gathered cutting-edge scholarship from the context of debates about naturalism and discusses that within the framework of a theological account of the human condition. the result is a robust theological response to secular naturalism, one that deserves to be taken seriously by the latter’s proponents.” —v i c t o r i a h a r r i s o n , university of glasgow “rooted in ideas and insights generated by the cambridge platonists, and over against contemporary secular naturalism, this book brilliantly demonstrates that signs of real meaning, purpose, and love exude within and throughout the universe. follow taliaferro’s the golden cord to the very heart of reality and the good life—the wellspring of truth, value, beauty, and temporal and eternal goods.” — c h a d m e i s t e r , bethel college c h a r l e s ta l i a f e r ro is professor of philosophy at st. olaf college. universit y of notre dame press not re dame, i n • undpress.nd.edu 	the golden cord: a short book on the secular and the sacred 	contents
 	acknowledgments 	introduction 	dinner party with virginia woolf or a summer evening with w. h. auden? 	golden cords 	golden cords leading to eternity 	situating the current project 	 love in the physical world 	intellectual climates 	the radical materialist temptation 	identity problems 	going shopping and the deep background 	what happens to the self on dennett’s view? 	where is the love? 	materialist faith 	 selves and bodies 	ghosts in machines 	a conversation about dualism 	integrating person and body 	some positive reasons for integrated dualism 	loving selves and bodies 	ghosts in machines revisited 	 some big pictures 	the incoherence of theism 	the incoherence of the incoherence 	unique positions and an explanation 	evans on cranes and skyhooks 	daniel dennett, julian of norwich, and comprehensive accounts 	 some real appearances 	revelation and the obstacle course 	the problem of verification 	unreliability of religious experience 	objection from religious diversity 	religious experiences explained through sociology, anthropology, neurology, and psychology 	further steps 	 is god mad, bad, and dangerous to know? 	is god a bystander? 	redemption is not justification 	love of god 	the problem of freedom 	the problem of innocent victims 	the hiddenness of god objection 	the vices of god 	where do we go from here? 	 redemption and time 	the stages of redemption 	two christian models of redemption 	other models 	incarnation and time 	 eternity in time 	divine indwelling and the journey to god 	transient and eternal goods 	god as the essence of boundless life 	living with eternal life 	 glory and the hallowing of domestic virtue 	eternal love in ordinary life versus kleos in the classics 	four golden cords 	love, love, love. 	notes
 	introduction 	 . love in the physical world 	 . selves and bodies 	 . some big pictures 	 . some real appearances 	 . is god mad, bad, and dangerous to know? 	 . redemption and time 	 . eternity in time 	 . glory and the hallowing of domestic virtue 	index
 [pdf] mental health and older people. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /nop. . . .s corpus id: mental health and older people. @article{aveyard mentalha, title={mental health and older people.}, author={b. aveyard}, journal={nursing older people}, year={ }, volume={ }, pages={ - } } 	b. aveyard 	published 	medicine 	nursing older people members of the rcn mental health and older people steering committee met with colleagues from the nurses working with older people forum in september to set our strategy for next year.  view on pubmed integration.samhsa.gov save to library create alert cite launch research feed share this paper figures and topics from this paper 	 figure 	 figure 	parkinson disease 	mental disorders 	demyelinating diseases 	neoplasms 	virus diseases 	meningitis 	traumatic brain injury 	syphilis 	atrophic 	cholesterol 	multiple sclerosis 	bacterial infections 	cerebrovascular accident 	lyme disease 	hypercholesterolemia 	abnormal degeneration 	brain injuries 	parkinsonian disorders 	heredodegenerative disorders, nervous system 	genetic predisposition to disease 	aging 	hypertensive disease references showing - of references the impact of caring on caregivers' mental health: a review of the literature. 	s. savage, s. bailey 	medicine 	australian health review : a publication of the australian hospital association 	 	 	pdf save alert research feed family caregivers : disability, illness and ageing 	h. schofield 	medicine 	 	 save alert research feed prospective patterns of resilience and maladjustment during widowhood. 	g. bonanno, c. wortman, r. nesse 	medicine, psychology 	psychology and aging 	 	 	pdf save alert research feed definition, measurement, and correlates of quality of life in nursing homes: toward a reasonable practice, research, and policy agenda. 	r. kane 	medicine 	the gerontologist 	 	 	pdf save alert research feed impacts on practitioners of using research-based carer assessment tools: experiences from the uk, canada and sweden, with insights from australia. 	n. guberman, e. nicholas, m. nolan, doris rembicki, u. lundh, janice a. keefe 	medicine 	health & social care in the community 	 	 save alert research feed each caregiver relationship is different and some carers may be better equipped to deal with the challenges of caring for a relative than others 	 bound to care, allen & unwin, north sydney, nsw 	 related papers 	abstract 	figures and topics 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . udk: . - . /. : . stručni rad doi: . /specedreh - intervencije potpomognute Životinjama – moguĆnosti i ograniČenja primene kod mladih sa razvojnim smetnjama i problemima u ponaŠanju biljana milanoviĆ-dobrota univerzitet u beogradu fakultet za specijalnu edukaciju i rehabilitaciju vrsta komplementarnog tretmana pod interdisciplinarnim nazivom intervencije potpomognute životinjama (animal-assisted interventions – aai) podrazumeva svaku vrstu intervencije koja uključuje različite životinje u okviru dva ključna modaliteta: aktiv- nosti (animal-assisted activities – aaa) i terapije (animal-assisted therapy – aat). intervencije se mogu sprovoditi sa osobama svih uzrasta u različitim okruženjima (školama, zdravstvenim i vaspitno- popravnim ustanovama itd.). osnovni cilj rada je da pregledom do- stupne literature prikaže različite forme i sadržaje intervencija, kao i fleksibilnu implementaciju kod mladih osoba sa razvojnim smet- njama i poremećajima u ponašanju. pored potencijala koje nude ak- tivnosti i terapije potpomognute životinjama, istaknuta su određena ograničenja i izazovi u primeni intervencija, kao i kritike analize efe- kata u realizovanim empirijskim istraživanjima. ključne reči: intervencije potpomognute životinjama, smetnje u razvoju, poremećaji u ponašanju e-mail: biljanamilanovicdobrota@gmail.com specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . uvod simbiotska veza ljudi i životinja poznata je od davnina. tokom istorije životinje su na različite načine učestvovale u ži- votima ljudi, bilo da su korišćene u ishrani, lovu, ratovanju ili druženju, ali su vremenom ljudi prepoznali i ostale potencijale životinja, tako da su mnoge uloge, ranije isključive, proširene. danas se u širokom spektru tretmana osoba sa ometenošću, pretežno u razvijenim delovima sveta, sprovodi vid komple- mentarnog tretmana pod nazivom intervencije potpomognute životinjama (animal-assisted interventions – aai), koje obu- hvataju dva ključna modaliteta: aktivnosti (animal-assisted activities – aaa) i terapiju (animal-assisted therapy – aat). intervencije potpomognute životinjama mogu se pri- menjivati u različitim okruženjima: školama, odeljenjima za učenike sa teškoćama u mentalnom razvoju (gee, harris & johnson, ; heimlich, ; nimer & lundahl, ; putz, ; esteves & stokes, ), bolnicama, klinikama, domovima za stare osobe (chandler, ; mcdowell, ; prothmann, bienert & ettrich, ), na sastancima individu- alnog savetovanja (watts & everly, ), bibliotekama (nimer & lundhal, ) itd. intervencije potpomognute životinjama uključuju ši- rok izbor životinja, od kućnih ljubimaca (psi, mačke, ribice), domaćih životinja (konji, zečevi, pilići, koze, magarci), ptica (lópez-cepero, rodríguez-franco, perea-mediavilla, blanco- piñero, tejada-roldán & blanco-picabia, ; marino, ; maujean, pepping & kendall, ; morrison, ), ređe riba (cole & galinski, ), kao i egzotičnih životinja poput delfi- na (marino & lilienfeld, , ) ili čak slonova (swanepoel & odendaal, ). za razliku od situacije pre nekoliko decenija, kada su nezvanični izveštaji o potencijalima intervencija sa životinja- ma odnosili prevagu nad akademskim istraživanjima, danas se intervencije potpomognute životinjama više primenjuju i po- staju popularne, a njihova empirijska podrška raste (stewart, milanović dobrota, b.: intervencije potpomognute životinjama – mogućnosti i ograničenja primene kod mladih sa razvojnim smetnjama i problemima u ponašanju chang & jaynes, ). imajući u vidu da je u našoj zemlji ovo nova i neistražena oblast, cilj ovog rada je da pregledom rele- vantne literature prikaže različite forme i sadržaje intervencija, s posebnim osvrtom na potencijale, ali i ograničenja u primeni kod osoba sa razvojnim smetnjama i problemima u ponašanju. istorijski razvoj aai jedno od najranijih verovanja koje obuhvata značaj živo- tinja u životima ljudi poznato je kao animizam. prema ovom arhaičnom sistemu verovanja, koje datira iz vremena pre nove ere, ne postoji razdvajanje duhovnog i fizičkog sveta, te su ži- votinje, bilo žive ili mrtve, tretirane sa dubokim poštovanjem kako bi se izbegla velika nesreća (chandler, ; serpell, , prema wodder, : ). ljudi i životinje, vođeni zajedničkom potrebom za skloništem, hranom i zaštitom, uzajamno su sa- rađivali i koevoluirali, tako da su u tom procesu pojedine živo- tinje pripitomljene. u starom egiptu ljudi su izuzetno poštova- li pse i mačke, koje su često mumificirali da bi im se pridružili u zagrobnom životu, dok su pojedine bogove predstavljali sa likom životinja. i u vreme antičke grčke i rimske imperije ži- votinje su cenjene kao partneri u ljudskom opstanku i lečenju (walsh, ). počeci intervencija u kojima su se životinje koristile u te- rapijske svrhe zabeleženi su još u ix veku u belgiji, kada su oso- bama s ometenošću na farmama dodeljivane životinje o kojima je trebalo da brinu (jenkins, ; fine, ; arkow, , prema matuszek, ). početkom xviii veka azili i psihijatrij- ske ustanove započeli su sa primenom eksperimentalnog leče- nja pacijenata uz pomoć životinja. u dokumentovanim poda- cima iz engleske opisana je upotreba zečeva, galebova, sokola i živine, dok su u nemačkim ustanovama za zbrinjavanje pacije- nata s epilepsijom koristili konje, pse, mačke, ovce i majmune (fine, ; jackson, ; lutwack-bloom, wijewickrama & smith, ; marr et al., ; serpell, , prema matuszek, ; wodder, ). Čak je i florens najtingejl (florence specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . nightingale), čuvena britanska medicinska sestra, krajem xix veka podržavala druženje pacijenata sa malim životinjama (altschiller, , prema budahn, ). međutim, s pojavom psihotropnih lekova, u literaturi nestaju informacije o uključi- vanju životinja u terapiju, sve do četrdesetih godina xx veka kada je američka vojska počela da ih koristi u oporavku ratnih veterana (cole, ). početak istraživanja uticaja životinja na ljude vezuje se za šezdesete godine xx veka. naime, boris levinson, dečji psihijatar, smatra se pionirom u oblasti terapije potpomognute životinjama (rossetti & king, ). on je doveo svog psa na sastanak sa neverbalnim i anksioznim detetom, da bi nakon toga primetio značajan napredak u radu, a svoja zapažanja o tome prezentovao je . godine u članku pod nazivom „pas kao koterapeut” (levinson, , prema levinson, ). prvi je istakao da veza sa životinjama, naročito u detinjstvu, može pozitivno uticati na ljudsku ličnost (levinson, , prema bachi, terkel & teichman, ). od tada se životinje smatra- ju partnerima, a ne samo sredstvom za eksploataciju (zamir, ), dok kompleksnost uzajamnog odnosa ljudi i životinja istraživači još uvek pokušavaju da objasne. terminološka određenja uključivanje životinja u tretmane osoba sa razvojnim smetnjama i poremećajima u ponašanju proisteklo je iz multi- disciplinarne oblasti istraživanja, u svetu poznate kao antrozo- ologija (eng. anthrozoology) ili interakcija ljudi i životinja (eng. human-animal interaction – hai), koja obuhvata međusobne i dinamičke odnose ljudi i životinja, kao i načine na koje te in- terakcije mogu uticati na psihofizičko zdravlje i dobrobit ljudi (esposito, mccune, griffin & maholmes, ). analizom literature iz poslednje dve decenije uočava se terminološka konfuzija oko pojmova u vezi sa intervencijama potpomognutim životinjama. primetno je mnoštvo različitih termina koje autori koriste u sinonimskom značenju: asistencija, milanović dobrota, b.: intervencije potpomognute životinjama – mogućnosti i ograničenja primene kod mladih sa razvojnim smetnjama i problemima u ponašanju interakcija, odnos, terapija itd. (na primer: human-animal inte- ractions, pet therapy, pet-partners, animal intervention itd.). u nastojanju da promoviše standardizaciju terminologije, vodeća profesionalna organizacija u oblasti razvoja, istraživanja i pro- mocije povezanosti ljudi i životinja „pet partners” ( – . god. delta society) uvodi termin „intervencije potpomognute životinjama”. ovaj pojam se odnosi na svaku vrstu intervencije koja intenciono obuhvata ili uključuje životinje u tretman/pro- ces/ambijent sa ciljem unapređenja zdravlja i dobrobiti kori- snika (kruger & serpell, ). ovako široko definisan termin uključuje dva ključna modaliteta (aaa i aat) koji koriste životinje, ali predstavljaju dve različite vrste programa sa ra- zličitim ciljevima, koji se ponekad preklapaju, pa kao rezultat toga vrlo često dolazi do pogrešne terminološke upotrebe u publikacijama i svakodnevnoj konverzaciji. zbog toga je dife- renciranje ova dva pojma od ključnog značaja za razumevanje intervencija potpomognutih životinjama. terapija potpomognuta životinjama je formalna, cilja- no usmerena intervencija sa životinjom koja je integralni deo procesa tretmana. Životinja mora da ispunjava specifične kri- terijume podobnosti, a intervenciju sprovode stručnjaci koji demonstriraju veštine i stručnost u okviru svoje oblasti ek- spertize (evans & gray, ). program aat ima fiksno vreme trajanja, zahteva vođenje dokumentacije i evaluaciju uspeha individualnog plana tretmana, a ciljevi su usmereni na fizički aspekt funkcionisanja osobe (npr. razvoj fine motorike, unap- ređenje veština upravljanja invalidskim kolicima, održavanje balansa tokom stajanja), socijalni (npr. interakcije sa drugima), obrazovni (npr. proširivanje vokabulara, poboljšanje koncep- tualnih znanja), psihički (povećanje pažnje, samopoštovanja, redukovanje anksioznosti) (pet partners, , prema goddard & gilmer, ). s druge strane, aaa je bazično neformalni metod koji koristi manje strukturirane intervencije osmišljene da podsti- ču motivacione, obrazovne, terapijske i/ili rekreativne aktiv- nosti kako bi se unapredio kvalitet života pojedinca ili grupe (fine, ; o’haire, mckenzie, mccune & slaughter, ). specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . aktivnosti (npr. susreti i pozdravni govori prilikom poseta lju- di u bolnicama, zdravstvenim centrima, centrima za produ- ženu negu, školama, zatvorima itd.) mogu sprovoditi posebno obučeni profesionalci, defektolozi ili volonteri u partnerstvu sa životinjama (thigpen, ellis & smith, ). aktivnosti potpo- mognute životinjama su pretežno spontane, a ne ciljano usme- rene, tako da se specifični ciljevi ne moraju planirati, a nije po- trebno ni vođenje dokumentacije. za razliku od aktivnosti koje su više fokusirane na emocionalne prednosti korisnika, kod aat se na osnovu postavljenih specifičnih ciljeva determiniše pravac odvijanja terapije, u odnosu na koje se meri napredak (kruger & serpell, ). vrste životinja koje najčešće učestvuju u aai konji. intervencije potpomognute konjima su specija- lizovane forme intervencije potpomognute životinjama koje koriste interakciju konja i osobe, čije se područje delovanja od- vija kroz aktivnosti (equine-assisted activities – eaa) i terapiju (equine-assisted therapy – eat). eaa je zajednički termin za različite programe (npr. vožnja u zapregama, preskakanje pre- preka, sportsko jahanje za osobe sa ometenošću), zasnovane na kontaktu osobe sa konjem, čiji je osnovni cilj relaksacija i unapređenje kvaliteta života osoba svih uzrasta (macauley & gutierrez, ; meinersmann, bradberry & robers, ; nimer & lundahl, ), tako da aktivnosti mogu sprovoditi instruktori jahanja ili volonteri (gabriels et al., ). za razli- ku od aktivnosti, eat je posebno kreirana za svakog učesni- ka na osnovu unapred sprovedenih dijagnostičkih procena i definisanih specifičnih ciljeva, koju sprovodi obučeni terapeut (trotter, ). jedna od formi terapije uz pomoć konja je hipoterapija, razvijena šezdesetih godina xx veka u fizikalnoj rehabilita- ciji kao organizovan i strukturiran pristup (chandler, ). hipoterapiju sprovodi terapeut (fizioterapeut ili okupacioni/ milanović dobrota, b.: intervencije potpomognute životinjama – mogućnosti i ograničenja primene kod mladih sa razvojnim smetnjama i problemima u ponašanju radni terapeut) sa konjem, koji je sredstvo. pokreti konja se koriste za stimulisanje mobilnosti, posturalne kontrole i rav- noteže, mišićnog tonusa, pokretljivosti zglobova ili redukova- nja hroničnog bola, teškoća u hodanju, sedenju itd., da bi se upotpunila fizikalna i okupaciona terapija (bachi et al., ; altschiller, ). takođe, u ostvarivanju individualno postav- ljenih ciljeva, fizičke karakteristike konja (npr. temperatura za jedan stepen viša od ljudske, duga oštra dlaka grive i repa i kra- ća mekana dlaka tela, ritmičan hod sličan ljudskom koji zah- teva od osobe da se drži uspravno i balansira da ne bi pao itd.), imaju najveći uticaj na vestibularno, taktilno i proprioceptivno čulo osobe (murray- slutksy ; scialli, , prema vuga, ). pored konja, terapeuta i osobe koja je na hipoterapiji, u tretmanu učestvuje pratilac koji pomaže terapeutu pruža- jući potrebnu podršku jahaču i vodič konja koji ga kontroliše (kruger & serpell, ; zadinkar & kastrin, ). za razliku od hipoterapije, koja pripada aat, terapijsko jahanje pripada aaa. u terapijskom jahanju konj je partner instruktoru koji obučava osobu, prevashodno zbog uživanja u samom jahanju (silkwood-sherer et al., ; tseng et al., ), dok se istovremeno razvija terapijska povezanost sa ko- njem (bass et al., ) i unapređuje kvalitet života (all et al., , prema boyd, ). intervencije uz pomoć konja veoma su zastupljene kod dece sa motoričkim smetnjama, pretežno dece sa cerebralnom paralizom (npr. benda, mcgibbon & grant, ; casady & nichols-larsen, ; champagne, corriveau& dugas, ; cherng, liao, leung & hwang, ; honkavaara & rintala, ; lee, kim & na, ; winchester, kendall, peters, sears & winkley, ). zahvaljujući iskrenoj, tihoj i neosuđujućoj prirodi konja, interakciji klijenta sa konjima i drugim osoba- ma koje učestvuju u eaa i eat, kao i druženju sa ostalom decom, intervencije uz pomoć konja deluju i na podsticanje ra- zvoja socijalnih veština, prosocijalnog ponašanja, mentalnog i fizičkog zdravlja kod dece sa smetnjama u razvoju i učenju, poremećajima u ponašanju, osoba sa posttraumatskim stre- som, sa zlostavljanom i zanemarivanom decom (npr. esposito specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . et al., ; schultz et al., ; smith-osborne & selby, ; trotter, chandler, goodwin-bond& casey, ). specijalizovani vid terapije u kojem se konj koristi kao terapeutsko sredstvo poznat je pod nazivom psihoterapija uz pomoć konja (schultz, remick-barlow & robbins, : ). ova vrsta terapije zasniva se na odnosu i neverbalnoj komu- nikaciji između klijenta i konja tokom obavljanja različitih ak- tivnosti (npr. hranjenje, timarenje, održavanje higijene, šetanje itd.). njihova interakcija predstavlja važan izvor informacija za terapeuta, koji primenom tradicionalnih tehnika psihoterapije analizira osećanja, strahove, ponašanje, događaje i teškoće koje klijent oseća, te se može koristiti za jačanje samopoštovanja, ličnog i interpersonalnog pouzdanja i komunikacije (lentini & knox, ; schultz et al., , prema boyd, : ). intervencije u kojima učestvuju konji imaju svoje pred- nosti, od toga da uvođenje konja u tretman može zainteresova- ti mnoge osobe koje inače nisu motivisane da sarađuju, pa do činjenice da samo jahanje pruža mogućnost kreiranja novih i interesantnih zadataka. s druge strane, konji zahtevaju ve- liki prostor za boravak i redovno održavanje higijene, a rizik predstavljaju ozbiljne povrede koje je moguće zadobiti od ko- nja (chandler, ). pored toga, jedna studija je razmatrala doživljaj stresa kod terapijskog konja i rezultati su pokazali da iznenadni pokreti, nepoštovanje sigurnosnih uputstava, prav- ljenje buke itd., posebno od dece sa problemima u ponašanju, mogu uticati na stres (spuštene uši, zabacivanje glave i sl.), više nego običan trening sa rekreativnim jahačima (kaiser, smith, heleski & spence, ). psi. kroz istoriju psi su se koristili za druženje, lov i čuvanje stoke, sport i rekreaciju, bezbednost i zaštitu, vojnu podršku, emocionalnu podršku i asistenciju u radu sa osoba- ma sa fizičkom i intelektualnom ometenošću (chumley, ; serpell, ). od levinsonovog uključivanja psa u terapijske sesije do danas ovaj vid podrške pasa izučavan je u različitim okruženjima, od ordinacija (levinson, ; mallon, ), preko kućnog okruženja (triebenbacher, ), učionica i milanović dobrota, b.: intervencije potpomognute životinjama – mogućnosti i ograničenja primene kod mladih sa razvojnim smetnjama i problemima u ponašanju bolnica (beetz, ; carlisle, ; jalongo, ; jalongo, astorino & bomboy, ; ladarola et al., ; le roux, swarts & swart, ), do objekata sa specijalnom namenom (anderson & olson, ; esteves & stokes, ). uprkos činjenici da psi nude jedinstveni oblik bezuslov- ne podrške i spontani entuzijazam za uspostavljanje kontak- ta, ne mogu svi učestvovati u intervencijama. preduslov je da psi budu stari najmanje godinu dana, bilo koje rase i veličine, dok se selekcija za obuku i sticanje sertifikata vrši na osnovu nežnog i mirnog temperamenta, kao i sposobnosti da se lako prilagode nepoznatim okolnostima i osobama. u odsustvu re- levantnijeg termina, za svakog registrovanog psa koji učestvu- je u intervencijama koristi se izraz „terapijski pas” (jalongo et al., ). važno je naglasiti da terapijske pse ne treba poisto- većivati sa psima čija je uloga u obezbeđivanju asistencije u svakodnevnim životnim aktivnostima osoba sa ometenošću. ada (americans with disabilities act) definiše „servisne pse” kao pse koji su individualno trenirani da izvršavaju određene zadatke ili funkcije za osobe sa ometenošću koje oni ne mogu samostalno da obave, kao što su: pomoć slepim osobama pri kretanju u prostoru, upozoravanje gluvih osoba na zvučne si- gnale, vuča/guranje invalidskih kolica, asistencija osobama sa problemima u ravnoteži, donošenje i skupljanje stvari za osobe sa lošom mobilnošću itd. (shubert, ). suštinska razlika iz- među terapijskog i servisnog psa je što terapijski pas učestvuje u intervencijama uvek u pratnji svog vlasnika i obučen je za rad sa različitim osobama, a ne samo sa jednom. u realizaciji intervencija kod mladih sa razvojnim smetnjama i problemima u ponašanju potrebno je obezbedi- ti određene sanitarne i bezbednosne uslove za rad sa psima. kada deca dolaze u kontakt sa psom potrebno ih je, u skladu sa uzrastom, pripremiti za dolazak psa (informisati ih kako se uspostavlja kontakt, kada i kako mu se prilazi, kako se pra- vilno igra, dodiruje i kako se ponaša u neočekivanim situa- cijama) i proceniti podobnost svakog deteta za interakciju sa psima (jalongo, ; jalongo, ). pored toga, pre počet- ka intervencije, a radi pribavljanja dozvole da dete učestvuje specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . u programu, roditeljima treba predstaviti kvalifikacije psa i vlasnika/terapeuta i s poštovanjem objasniti proceduru, vrste kontakta koje će se realizovati i sl. da bi se zaštitili i dete i pas poželjno je prati ruke pre i posle intervencije, obezbediti pauze za psa tokom vežbi, nikada ne ostavljati psa bez nadzora i pre- kinuti ukoliko on pokazuje znakove stresa (drhtanje, držanje unazad povijenih ušiju ili repa između nogu, kao i konstantno oblizivanje), a poseban oprez i vrlo blizak nadzor zahteva se u radu sa decom koja imaju poremećaje u ponašanju (jalongo et al., ). maČke i ostale sitne Životinje. mačke su, pored pasa, druga vrsta kućnih ljubimaca koja je integrisa- na u aai. za razliku od konja i pasa, odnos mačaka prema ljudima se, na prvom mestu, zasniva na pretpostavci o reci- pročnom odnosu „uzimanja i davanja” i poštovanju njihove nezavisne prirode (turner, : , prema cole, ). da bi mačka učestvovala u intervenciji potrebno je da bude strplji- va, mirna, uživa u maženju, traži ljudsku pažnju, lako prihvata novo okruženje, toleriše transport i nije previše uznemirena kada je izložena buci ili neočekivanom ponašanju (chandler, ; granger & kogan, ). mačke prevashodno pružaju taktilnu stimulaciju, ali mogu pomoći u unapređivanju grube i fine motorike kroz igru igračkama, četkanje, maženje i hra- njenje (granger & kogan, ). međutim, velika mana je vi- soka učestalost alergija ljudi na mačju dlaku, ali i činjenica da su mačke introvertne životinje (chandler, ), sa kojima se teže može postići visok nivo utreniranosti, pa se zbog toga više koriste u aktivnostima nego u terapiji (cole, ; granger & kogan, : ). za decu su posebno značajni mali kućni ljubimci (zec, hrčak, ptice, ribice, kornjača, morsko prase itd.), o kojima mogu lako brinuti (flom, ). ove životinje mogu dati svoj doprinos deci u sticanju odgovornosti za sebe i druge (thigpen et al., ), formiranju interaktivnih odnosa koji podsti- ču privrženost, poverenje i viši nivo samopoštovanja (walsh, ; yorke, , prema budahn, ). ukoliko ne postoji mogućnost rada sa psima i mačkama, zbog alergija ili straha, milanović dobrota, b.: intervencije potpomognute životinjama – mogućnosti i ograničenja primene kod mladih sa razvojnim smetnjama i problemima u ponašanju zec može biti od pomoći i postati partner u radu nakon pažlji- vog procesa procene, jer predstavlja nešto novo i omiljena je životinja među decom mlađeg uzrasta. za auditivnu, odnosno vizuelnu stimulaciju u aaa mogu se koristiti različite vrste ptica (papagaji, kanarinci, zebe) i akvarijumske ribice, pošto su prikladne za držanje jer se vrlo lako prilagođavaju ambijentu (granger & kogan, ). pored toga, svakodnevna briga dece o malim kućnim ljubimcima može koristiti učenicima koji u školi imaju problem sa izradom domaćih zadataka da razvi- ju odgovornost i naviku u izvršavanju dnevnih obaveza, dok učenici kojima porodica ne obezbeđuje adekvatnu higijensku podršku, s druge strane, mogu preko održavanja higijene ži- votinja jednostavno uvideti značaj i za njih same, i to na jedan neponižavajući način (flom, ). delfini. intervencije sa životinjama koje uključuju delfine poslednjih godina postaju sve popularniji izbor tretma- na, primarno kod dece, ali i odraslih. formalna primena te- rapije uz asistenciju delfina (dolphin-assisted therapy – dat) počela je sedamdesetih godina xx veka i vremenom je prerasla u veoma unosan posao širom sveta, od sjedinjenih američkih država, meksika, bahama, preko izraela i rusije, do japana i kine (marino & lilienfeld, ). pošto su delfini egzotične životinje, partnerstvo s njima je veoma atraktivan oblik koji je promovisan putem medija, tako da popularnost u velikoj meri prevazilazi oskudnu bazu istraživanja (marino & lilienfeld, ; nathanson, ). terapiju uz asistenciju delfina treba razlikovati od rekre- ativnog plivanja sa delfinima, dodirivanja delfina ili igara skri- vanja, jer terapija podrazumeva složen program aktivnosti ba- ziran na sposobnostima i karakteristikama svakog pojedinač- nog deteta (Đorđević i talijan, ). u skladu sa definisanim ciljevima vrši se i odabir rekvizita, gumenih lopti različitih di- menzija, obruča za provlačenje, kartica sa nacrtanim simboli- ma i slično. na početku terapije vrši se „upoznavanje” korisni- ka i delfina s određene udaljenosti i u kontrolisanim uslovima, da bi se nakon toga kontakt proširio, od dodirivanja, igranja sa delfinom, do zajedničkog plivanja i jahanja na leđnom peraju, specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . u zavisnosti od koncepcije i programa tretmana (humphries, , prema Đorđević i talijan, ). pristalice dat-a ističu da je primarna svrha ove terapije da potpomogne druge tradicionalne tretmane, kao i da je efika- sna u tretmanu osoba sa kliničkim smetnjama i kod stanja kao što su autistički spektar poremećaja, angelmanov sindrom, daunov sindrom, disleksija, retov sindrom, tej-sašova bolest, turetov sindrom, vilijamsov sindrom itd. (fiksdal, houlihan & barnes, ), jer može pomoći u oblasti komunikacije, ra- zvoju finih i grubih motoričkih veština i senzornoj integraciji (brensing, linke, busch, matthes & eke van der woude, ). bez obzira na veliki broj pobornika ove terapije, u mno- gim studijama (npr. lukina, ; nathanson, ; marino & lilienfeld, ; servais, ) pronađeni su metodološki ne- dostaci (nepotpuni podaci o ispitanicima, poređenje dece ra- zličitih kliničkih slika i etiologija, neadekvatni opisi zadataka i procedura, nedostatak kontrolne grupe, proceduralne greške pri merenjima, izvođenje proizvoljnih zaključaka autora itd.), dok je, s druge strane, dat veoma skup, budući da se uobiča- jena cena za nekoliko tretmana kreće od dve do šest hiljada dolara, u zavisnosti od trajanja i lokacije na kojoj se terapija odvija (humphries, ; marino & lilienfeld, , sve pre- ma fiksdal et al., ). istraživanja u okviru aai Životinje imaju važnu ulogu u životu ljudi, od najranijeg uzrasta. one su zastupljene u crtanim filmovima, knjigama, kompjuterskom igricama i prikazane su na takav način da se deca lako povezuju sa njima (evans & gray, ), pa ne čudi što veliki broj empirijskih radova iz oblasti aai obuhvata po- pulaciju mladih osoba. u sjedinjenim američkim državama razvijeni su pro- grami u kojima se obučeni psi koriste u učionici kao „asistenti” za učenje specifičnih zadataka, kao što su dnevne životne vešti- ne, ili kao motivatori u realizaciji akademskih aktivnosti, poput milanović dobrota, b.: intervencije potpomognute životinjama – mogućnosti i ograničenja primene kod mladih sa razvojnim smetnjama i problemima u ponašanju čitanja i pisanja (esteves & stokes, ). zahvaljujući interak- tivnoj prirodi psa, koji može imati umirujući efekat, značajno se smanjuje verbalna, bihevioralna i emotivna anksioznost, tako da učenici lakše sarađuju sa vršnjacima i odraslima (mallon, ; prothmann et al., ) i imaju pozitivniji odnos prema školi (anderson & olson, ). druga istraživanja navode da aai kod učenika sa autističkim spektrom poremećaja u škol- skom okruženju mogu biti u funkciji kanalisanja prosocijalnog ponašanja, kao što su igra, komunikacija i mogućnost ostvari- vanja povezanosti sa drugim osobama (friesen & delisle, ; o’haire, mckenzie, beck & slaughter, ), zatim unapređe- nja ukupnog socioemocionalnog ponašanja prema životinji, nastavnicima, vršnjacima, kao i redukovanja samostimulišućih igara (carlisle, ; krškova et al., ; o’haire et al., ; silva et al., ), dok nastavnici izveštavaju o povećanoj socijal- noj interakciji, smanjenom agresivnom ponašanju i hiperaktiv- nosti (ascione & weber, ; daly & suggs, ; hergovich et al., , sve prema smith & dale, ). autori jedne male studije, koja je uključila troje dece predškolskog uzrasta s autističkim spektrom poremećaja, kombinovali su tretman socijalnih priča sa životinjama i te- rapiju potpomognutu psom i utvrdili da prisustvo terapijskog psa tokom čitanja povećava frekventnost iniciranja socijalnih kontakata (grigore & rusu, ). kod dece sa poremećajima u ponašanju aat se koristi da se kroz odnos sa životinjom uvežbava privrženost i formira odnos s drugim osobama. istraživači iz sad prikazali su dve studije slučaja na primerima dva dečaka sa adhd, od i godina, koji su radili po individualnom obrazovnom planu i sa dodatnom podrškom koja nije imala rezultate, zbog čega su uključeni u terapiju od tretmana sa psom. svaki tretman je osmišljen tako da se prvih minuta koristi za razgovor o psu i njegovoj nezi, nakon čega terapeut uvodi teme koje se tiču problema tokom nastave, a ostatak vremena provodi u obuci različitim tehnikama za rad sa psom. kako je terapija odmica- la, uvežbavali su složenije tehnike, koje su od dečaka zahtevale i veće strpljenje. rezultati dobijeni izveštavanjem nastavnika specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . pre i posle tretmana, primenom sveobuhvatne skale proce- ne (attention deficit disorder with hyperactivity (add-h) comprehensive teacher rating scale; ullmann, sleator & sprague, ) ukazali su na smanjen nivo distraktibilnosti, povećan kontakt očima tokom komunikacije sa drugima, pri- mereniji ton govora i smanjene nastupe besa u učionici (kogan, granger, fitchett, helmer & young, ). intervencije potpomognute životinjama mogu biti inte- grisane u individualne ili grupne terapije rada, sa širokim spek- trom uzrasnih grupa i osoba različitih sposobnosti, a psihoso- cijalni benefiti posebno su značajni za osobe kojima je teško da veruju drugima i/ili sa doživljenim traumatičnim iskustvom (zilcha-mano, mikulincer & shaver, ). u literaturi je opi- san slučaj deteta sa ometenošću koje je sa terapeutom sedelo u tišini, a zatim dobilo mogućnost da izabere jednog od ponuđe- nih terapeuta. dete je uspostavilo kontakt jedino s terapeutom koji je bio u pratnji svog psa. nakon toga postalo je aktivnije i želelo je da učestvuje u terapiji, a kod kuće je često govorilo o svojim iskustvima sa psom (chandler, portrie-bethke, barrio minton, fernando & o’callaghan, ). uticaj intervencije potpomognute psima, konkretnije slo- bodne igre sa psom, ispitivan je tokom petonedeljnog istraži- vanja u kojem je učestvovalo sto dece i adolescenata uzrasta od do godina, koji su se nalazili na stacionarnom psihijatrij- skom tremanu. od ukupnog broja, ispitanik je učestvovao u nedirektivnim aktivnostima tokom grupnih tretmana, dok kontrolna grupa od ispitanika nije. rezultati ove studije po- kazali su da prisustvo psa povećava vigilnost i pažnju, izaziva veću otvorenost i želju za ostvarivanjem socijalnih kontakata i omogućava bolju psihičku stabilnost (prothmann et al., ). jedan od prvih programa obuke za rad sa životinjama, u kojem su učestvovali maloletni zatvorenici, kreiran je . godine u ohaju sa ciljem da se osposobe za staranje o psima i da po izlasku iz ustanove pokrenu otvaranje odgajivačnica. rezultati procene ovog programa ukazuju na napredak u so- cijalnim interakcijama adolescenata, poštovanju autoriteta, milanović dobrota, b.: intervencije potpomognute životinjama – mogućnosti i ograničenja primene kod mladih sa razvojnim smetnjama i problemima u ponašanju empatiji, razumevanju, pouzdanosti, a najvažnijim nalazom smatra se činjenica da među učesnicima programa nije bilo povratnika (merriam-arduini, , prema granger & kogan, ). fizički efekti terapijskog jahanja konja najupečatljiviji su kod dece sa cerebralnom paralizom. kod njih je utvrđen na- predak u sposobnostima hodanja, trčanja i skakanja (cherng et al., ; drnach et al., ; low et al., ; sterba et al., ). psihološki efekat terapijskog jahanja kod dece sa ome- tenošću utvrđen je u razvoju govora i jezika (gabriels et al., ; sterba et al., ), motivaciji (bass et al., ), doživ- ljaju dostignuća i samopoštovanju (all et al., ; davis et al., ; elliott et al., ; lessick et al., ; sterba et al., ; surujlal & rufus, ) i porastu samopouzdanja (davis et al., ; drnach et al., ; surujlal & rufus, ). efekti te- rapijskog jahanja zabeleženi su i u socijalnom funkcionisanju, posebno kod dece sa autističkim spektrom poremećaja i inte- lektualnom ometenošću (bass et al., ; bizub et al., ; debuse et al., ; grandin et al., ; surujlal & rufus, , sve prema boyd, ). tokom dvogodišnje studije koja je obuhvatila sedmoro mladih ( – godine) žrtava zlostavljanja, proučavani su efek- ti interakcije sa konjima. ključne teme koje su proizašle iz ove studije odnosile su se na efikasnost u izgrađenom poverenju i samopoštovanju, osećaj ovladavanja situacijom i razvijenu em- patiju prema konjima (burgon, ). u drugoj studiji, kod deteta koja su bili svedoci porodičnog nasilja, kroz tretma- na procenjivan je efekat psihoterapije uz pomoć konja. razlika u dobijenim rezultatima pre i nakon sprovedene terapije, pri- menom dečje globalne skale funkcionisanja (the children’s global assessment scale; shafferet al., ), ukazuje na znača- jan napredak svih učesnika (shultz, remick-barlow & robbins, , prema signal, taylor, botros, prentice & lazarus, ). u studiji holandskih istraživača ispitan je efekat šesto- nedeljne terapije potpomognute delfinima na razvoj govora i socijalno ponašanje kod dece sa daunovim sindromom. u specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . istraživanju je učestvovalo dece, s tim što je dece bilo uključeno u terapiju, dece je samo plivalo u bazenu, a dece je stavljeno na listu čekanja, koja je zapravo bila kontrolni period od šest nedelja. primenom metsonove skale za evalu- aciju socijalnih veština kod osoba sa teškom intelektualnom ometnošću (matson evaluation of social skills for individuals with severe retardation – messier; matson, ) procenjeni su parametri pre i posle perioda od šest nedelja. ponovljena merenja kod grupe dece koja su koristila dat utvrdila su značajno poboljšanje u parametrima „verbalizacija” i „prepo- znavanje osoba”, dok je parametar „impulsivnost” pokazivao umanjenje nepoželjnog ponašanja. razlike između grupe koja je samo plivala i one koja je čekala na primenu tretmana nisu otkrivene (griffioen & enders-slegers, ). nemački istraži- vači su primenili dat kod dece sa ometenošću (daunov sindrom, telesna i intelektualna ometenost), ali su uključili i njihove roditelje i pedagoške asistente. rezultati dobijeni od roditelja ukazuju na pozitivne promene u dečijim komunika- cionim sposobnostima i socioemocionalnom ponašanju, dok podaci na osnovu izveštavanja pedagoških asistenata pokazuju umeren efekat na komunikacione sposobnosti deteta, ali ne i na socioemocionalno ponašanje (stumpf & breitenbach, ). ograničenja aai intervencije potpomognute životinjama postaju sve po- pularnije u razvijenim delovima sveta, ali mnogi autori uka- zuju na ograničenja u njihovoj primeni. najpre, pojedini istra- živači (npr. thigpen et al., ) ističu da se ljudi razlikuju u stavovima prema životinjama u odnosu na pol, nivo obrazova- nja, socioekonomski status, geografsku regiju itd. u ekonom- ski razvijenim zemljama povezanost ljudi i životinja je mnogo veća, dok je u zemljama u razvoju slabija pošto finansijski ne mogu da brinu o njima, već ih vrednuju kao životinje od kojih će imati koristi, bilo da su izvor hrane ili sredstva za rad. Čak i u zemljama sa ukorenjenom primenom nekih oblika aai milanović dobrota, b.: intervencije potpomognute životinjama – mogućnosti i ograničenja primene kod mladih sa razvojnim smetnjama i problemima u ponašanju naglašava se da je neophodno razmatrati određene preduslove za njihovu implementaciju. među najvažnijim je svakako po- stojanje određenih alergija, strahova ili fobija, ali i prethodna iskustva sa životinjama. osobe sa pozitivnim iskustvima biće opuštenije tokom intervencija, dok kod osoba koje su dožive- le negativna iskustva može doći do anksioznosti (matuszek, ). do pre desetak godina istraživanja su uključivala poje- dinačne studije slučaja, bez kontrolisanih uslova ili kontrolne grupe, sa prikazom rezultata koji su imali uglavnom deskrip- tivni karakter (smith-osborne & selby, ), dok poslednjih godina samo mali broj studija uključuje kontrolisani dizajn (maujean et al., ). pojedini istraživači (npr. kazdin, ; marino, ) kritikuju limitiranu empirijsku bazu prevashod- no zbog parcijalnog izveštavanja o proceni programa interven- cija i ukazuju na postojanje jasnog raskoraka između prakse i istraživanja (lópez-cepero et al., , prema lópez-cepero, perea-mediavilla &netedu, ). i u studijama koje smo nave- li uočava se da većina obuhvata relativno mali broj ispitanika, o kojima ne postoji dovoljno informacija. procedura tretmana je oskudno opisana, iako je važna za repliciranje i standardiza- ciju, dok se rezultati istraživanja uglavnom oslanjaju na samoi- zveštavanje i opisuju pretežno pozitivne efekte intervencije. studije sprovedene u školskom okruženju izveštavaju o prednostima aai, ali metodološki pristupi i vremenski rokovi tretmana često variraju i nemaju jasne eksperimentalne okvi- re, što umnogome otežava donošenje zaključaka i poređenje rezultata (brelsford, meints, gee & pfeffer, ). sem toga, istraživači su zabeležili da i pored velikog interesovanja i po- zitivnog stava nastavnika prema aai, nastavno osoblje sma- tra da im je potrebno mnogo više znanja, podrške i sredstava da primene određene intervencije potpomognute životinjama, dok uporedo razmatraju svoja dodatna radna opterećenja, do- brobit životinja i odnos dece prema njima (rud & beck, ; ladarola et al., , prema smith & dale, ). specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . jedna od većih zamerki na relaciji čovek–životinja pred- stavlja stav ljudi da i dalje imaju tendenciju da životinju per- cipiraju kao instrument koji pomaže ljudskoj „disfunkciji” (taylor & signal, ), bez razmatranja potreba i interesa ži- votinje, pre svega u smislu prevencije okrutnosti/zlostavljanja životinja, kao i moralnih i filozofskih pitanja o dobrobiti ži- votinja (zamir, , prema taylor, fraser, signal & prentice, : ). umesto zakljuČka intervencije potpomognute životinjama predstavljaju re- lativno novu, kompleksnu oblast tretmana osoba sa razvojnim smetnjama i poremećajima u ponašanju. u radu su prikazane različite forme i fleksibilni sadržaji intervencija, kao i primeri istraživanja sa pozitivnim efektima kod mladih sa razvojnim smetnjama i poremećajima u ponašanju nakon intervencija sa različitim vrstama životinja. pored potencijala koje nude ak- tivnosti i terapije potpomognute životinjama, u relevantnoj literaturi navode se i ograničenja u primeni intervencija, kao i kritike analize efekata u realizovanim empirijskim istraživa- njima. ipak, potrebno je istaći da intervencije potpomognute životinjama podržavaju velike organizacije porodica dece sa ometenošću (fiksdal et al., ), zbog čega je važno da de- fektolozi i ostali stručnjaci tangentnih obrazovnih profila u budućem radu budu otvoreni za implementaciju ove inovativ- ne, komplementarne opcije tretmana kod mladih sa razvojnim smetnjama i poremećajima u ponašanju. milanović dobrota, b.: intervencije potpomognute životinjama – mogućnosti i ograničenja primene kod mladih sa razvojnim smetnjama i problemima u ponašanju literatura . altschiller, d. 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( ). pet in the therapy room: an attachment perspective on animal-assisted therapy. attachment & human development, ( ), - . doi: . / . . specijalna edukacija i rehabilitacija (beograd), vol. , br. . - , . animal-assisted interventions – possibilities and limitations of implementation in young persons with developmental disabilities and behavioral disorders biljana milanović-dobrota university of belgrade – faculty of special education and rehabilitation summary the type of complementary treatment under the interdisciplinary term animal-assisted interventions – aai implies all types of interventions which integrate a variety of animals within two key modalities: animal-assisted activities – aaa and animal-assisted therapy – aat. interventions can be implemented with persons of all ages in a variety of settings (schools, health care and correctional institutions, etc.). the main objective of this paper is to show different forms and contents of interventions, as well as flexible implementation through examples of research results involving young persons with developmental disabilities and behavioral disorders, by reviewing the available literature. apart from the potentials of animal-assisted interventions, certain limitations and implementation challenges have also been pointed out, as well as criticisms, primarily focused on methodological flaws in empirical research. key words: animals, animal-assisted interventions, persons with developmental disabilities and behavioral disorders primljeno: . . . prihvaćeno: . . . [pdf] corrections: systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. the senator-ontop series | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /bmjopen- - corr corpus id: corrections: systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. the senator-ontop series @article{abraha correctionssr, title={corrections: systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. the senator-ontop series}, author={i. abraha and j. rimland and f. trotta and giuseppina dell and aquila and a. cruz-jentoft and m. petrovic and adalsteinn gudmundsson and r. soiza and o. denis and mahony and a. guaita and a. cherubini}, journal={bmj open}, year={ }, volume={ } } 	i. abraha, j. rimland, + authors a. cherubini 	published 	medicine 	bmj open correspondence to dr iosief abraha; iosief_a@yahoo.it abstract objective: to provide an overview of nonpharmacological interventions for behavioural and psychological symptoms in dementia (bpsd). design: systematic overview of reviews. data sources: pubmed, embase, cochrane database of systematic reviews, cinahl and psycinfo ( – march ). eligibility criteria: systematic reviews (srs) that included at least one comparative study evaluating any non-pharmacological intervention, to treat… expand view on bmj open bmjopen.bmj.com save to library create alert cite launch research feed share this paper topics from this paper 	dementia 	pharmacology 	phototherapy 	anxiety disorders 	review [publication type] 	peer review 	extraction 	agitation 	scientific publication 	pet therapy 	cardiomyopathies 	manuscripts 	dance therapy 	massage therapy 	fecal microbiota transplantation 	revision procedure 	radiolabeled somatostatin analog study 	physical therapy exercises 	strudwick syndrome references showing - of references sort byrelevance most influenced papers recency efficacy of non-pharmacological interventions to prevent and treat delirium in older patients: a systematic overview. the senator project ontop series 	i. abraha, f. trotta, + authors a. cherubini 	medicine 	plos one 	 	 	pdf save alert research feed systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. the senator-ontop series 	i. abraha, j. rimland, + authors a. cherubini 	medicine 	bmj open 	 	 	pdf save alert research feed effectiveness of non-pharmacological interventions to prevent falls in older people: a systematic overview. the senator project ontop series 	j. rimland, i. abraha, + authors a. cherubini 	medicine 	plos one 	 	 	pdf save alert research feed evidence of and recommendations for non-pharmacological interventions for common geriatric conditions: the senator-ontop systematic review protocol 	i. abraha, a. cruz-jentoft, r. soiza, d. o’mahony, a. cherubini 	medicine 	bmj open 	 	 	pdf save alert research feed a systematic review of the effects of occupational therapy for persons with dementia: a meta-analysis of randomized controlled trials. 	s. kim, e. yoo, m. jung, s. park, j. park 	medicine 	neurorehabilitation 	 	 save alert research feed non-pharmacological interventions as a best practice strategy in people with dementia living in nursing homes. a systematic review 	e. cabrera, c. sutcliffe, + authors a. zabalegui 	medicine 	 	 save alert research feed a systematic review of the clinical effectiveness and cost-effectiveness of sensory, psychological and behavioural interventions for managing agitation in older adults with dementia. 	g. livingston, l. kelly, + authors c. cooper 	medicine 	health technology assessment 	 	 	 save alert research feed nonpharmacologic interventions to heal pressure ulcers in older patients: an overview of systematic reviews (the senator-ontop series). 	m. vélez-díaz-pallarés, isabel lozano-montoya, + authors a. cruz-jentoft 	medicine 	journal of the american medical directors association 	 	 save alert research feed efficacy and feasibility of nonpharmacological interventions for neuropsychiatric symptoms of dementia in long term care: a systematic review. 	d. seitz, sarah brisbin, + authors d. conn 	medicine 	journal of the american medical directors association 	 	 	pdf save alert research feed simulated presence therapy for dementia: a systematic review protocol 	i. abraha, j. rimland, + authors a. cherubini 	medicine 	bmj open 	 	 	pdf save alert research feed ... ... related papers 	abstract 	topics 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators blog posts, news articles and tweet counts and ids sourced by altmetric.com terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue people and their pets: a relational perspective on interpersonal complementarity and attachment in companion animal owners people and th eir pets: a relational perspective on interpersonal complementarity and attachment in companion animal owners lucinda e. woodwarda) and amy l. bauer b) a) assistant professor, department of psychological science, ball state university, muncie, in ; corresponding author e-mail: lewoodward@bsu.edu b) graduate assistant, department of psychological science, ball state university, muncie, in sent april , accepted march abstract th e current study evaluated the interpersonal circumplex as a theoretical model of companion animal personality and companion animal attachment. to this end, the study surveyed companion animal guardians (owners)— reporting their most recent pet a cat and report- ing their most recent pet a dog—to assess the relationships between interpersonal complemen- tarity and companion animal attachment. th e study used manova to evaluate differences in interpersonal traits for cats, dogs, and people who self-identified that cats or dogs were their ideal pets. results indicated that cats—and people who identified cats as their ideal pet—were more hostile in their orientation than were dogs or people who preferred dogs. in hierarchical regression- analysis, the study also confirmed the positive relationship between interpersonal complementarity and companion-animal attachment. keywords companion animal attachment, interpersonal style, interpersonal circumplex, complementarity introduction according to an old joke, dogs and cats can be understood by the basic mani- festation of their world views: regarding guardians (owners) a dog thinks: “th is person’s great. she feeds me, she pets me, and she plays with me. she must be a god”! a cat, on the other hand, thinks: “th is person’s great. she feeds me, she pets me, and she plays with me. i must be a god”! th e implication in this joke is that dogs and cats have personalities that are distinctive and effective in their relationships with humans. despite a dearth society and animals ( ) - www.brill.nl/soan © koninklijke brill nv, leiden, doi: . / x soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - of scientific theory or evidence to support their beliefs, pet owners—on an intuitive level—frequently categorize themselves as either “cat people” or “dog people.” th ose personality characteristics that distinguish these two categories of companion animal attachment, however, remain vague and ill-defined. attachment components th e origins of attachment as defined by bowlby ( ), attachment is a “lasting psychological connect- edness” (p. ) between two living beings. most commonly focused on the parent-child bond, attachment theory has been used to describe and explain people’s enduring patterns of relationships. early theories of attachment were founded in ethological studies of imprinting in non-primates (konrad lorenz’s work with water fowl in the s). a primary assumption of generalized attachment across species, however, is that of homology. for attachment to occur, there must be some isomorphic behavioral structure in both species that shares a common function. askew ( ) suggested that the behavior of pet owners toward their companion animals is actually parental behavior directed at another species. th us, early imprinting studies likely did not address the true symbiotic and affectional bonds that are presumed to define the construct of attachment. various research studies support the premise that attachment occurs in dogs (gacsi, topal, miklosi, doka, & csanyi, ; prato-previde, custance, spiezio, & sabatini, ; topal, miklosi, csanyi, & doka, ), primates (novak, & harlow, ), and humans (brether- ton, ; th ompson, ). although theories geared toward explaining the human/animal attachment have been offered in the past, as noted by kidd and kidd ( ), many of these early theories fall short because they are founded on analogous studies of purely human-animal or object-relationship models. th e current study attempts to arrest this critique by examining the human-companion animal bond from a functional, theoretical perspective utilizing the interpersonal cir- cumplex—a trait and state model of personality that has been found to apply to both humans and other animals, such as primates (de waal, ). interpersonal th eory and the circumplex model of personality grounded in theory and research spanning four decades, the circumplex tax- onomy has been described as one of the most sophisticated and theoretically coherent models of interpersonal behavior (henry, schacht, & strupp, ). a soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - circumplex is an arrangement of codable types of interpersonal behavior around a circular figure. eight primary personality dimensions are arrayed around the figure: . dominant (d); . friendly-dominant (fd); . friendly (f); . friendly-submissive (fs); . submissive (s); . hostile-submissive (hs); . hostile (h); and . hostile-dominant (hd). a major assumption of interpersonal theory is that relational behavior can be organized on two orthogonal dimensions, most commonly referred to as dominance-submissiveness (which reflects who controls whom) and hostility- friendliness (which identifies the warmth of the affiliation between two people). th e control/agency dimension is located vertically on a circle; the affiliation dimension is located horizontally. th ere have been a multitude of studies supporting the two-dimensional structure of the circumplex in human adult behavior (kiesler, ) over a variety of interpersonal relationships—includ- ing parent-child, marital, and therapist-patient. th e interpersonal circumplex has even received acceptance from researchers outside the interpersonal tra- dition as a valid measure of interpersonal patterns of relating. mccrae and costa ( ) confirmed the underlying factor structure of the interpersonal circumplex using a comparative model of the big five personality dimen- sions. wiggins ( ) proposed that the conceptual coordinates of control and affiliation apply to broader concepts in the social sciences and humanities such as gender studies, language acquisition, and social cognition. th e power of the circumplex model is that it describes state-like personality characteristics and provides a set of predictions about the impact different types of interpersonal behavior will have on the members of a dyadic interac- tion. th e central idea in interpersonal behavior theory is that of complemen- tarity. according to rules of complementarity, different kinds of behaviors elicit predictable responses from others in a reflex-like fashion. in essence, people seek the security of relating to others in a way that helps maintain their own preferred styles of interacting. according to orford ( ), those who are relatively dominant in their interpersonal orientations would feel most comfortable relating to others who are relatively more submissive in their styles of interacting. th us, along the control axis, complementarity is achieved when dominance pulls submission and vice versa (reciprocity). along the soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - affiliation axis, however, complementarity is achieved when an individual’s interpersonal style corresponds to that of a close other (correspondence). hence, those who are friendly in their interpersonal interactions would pre- fer to interact with others who are friendly, and those who are more distant or hostile would likewise prefer greater distance or hostility in their interpersonal transactions. th e rules of interpersonal complementarity have been found to correspond to greater peer liking (dryer, ), greater therapeutic change (kiesler, ), and greater marital satisfaction (campbell, ). although theories of complementarity have been utilized to better understand a diver- sity of human interactions, the interpersonal circumplex has never been extended to describe inter-species relationships, nor has this widely accepted theory been used to evaluate the human-companion animal bond—a field of growing interest within health psychology. companion animals and attachment in a survey of human-human and human-nonhuman animal relationships, okoniewski ( ) noted that “animals are significant beings in the overall schema of humans’ relatedness to the world around them” (p. ). th e roots of the human-animal bond date to very early history and likely have their origins in food acquisition. although urbanization and modern development have modified this bond, the attachment between humans and their companion animals remains relatively undiminished (bustad & hines, ). various factors have been offered to account for the quality and strength of human- animal attachment—including behavioral characteristics of the companion animal (houpt, honig, & reisner, ; new et al., ), lifestyle dictates (arkow & dow, ), and individual differences accounted for by the pet owner (brown & katcher, ; kidd, kidd, & george, ). in a study of gender and personality influences on human interactions with dogs and horses, brown ( ) noted that the affectional quality of the human/animal relationship was dependent on the owner’s need for dominance. owners need- ing greater dominance developed more punitive relationships with their pets, and those requiring less dominance sought greater affection. th is line of research suggests that the interaction between personality attributes of the human and the pet may contribute significantly to the strength of the com- panion animal bond and provides support for an interpersonal conceptualiza- tion of the dyadic transaction. personality and pets a growing body of research in animal behavior attributes behavioral character- istics that might be deemed personality to different breeds of dogs and cats soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - (are dogs people too?, ). hart and hart ( ) summarized seven behav- ioral profiles for common breeds of dogs and eight characteristics (as mani- fested by breed) in cats. podberscek and gosling ( ), applied the big-five factor model of human personality to the study of pets across a diversity of species. th e factors that emerged (bold/quiet and warm/harsh) were consis- tent with dimensions that overlapped the circumplex axes of control and affiliation. although there is notable difficulty in assessing animal personal- ity—the tendency toward anthropomorphism confounds the study of animal behavior—there is evidence, as reported by kwan ( ), that interpersonal perceptions of canine behavior are not particularly susceptible to inappropri- ate human projections or assumed similarity. in a series of studies conducted among patrons of a local dog park, goslin, kwan, and john ( ) reported that personality differences in dogs were detected and judged as accurately as those in humans. hence, personality attributions may result from very real differences in the social behavior of companion animals, specifically, inter- actional behaviors unique to dogs and cats. social behavior of animals. cats. in a study of social behavior of kittens in the first weeks of life, karsh ( ) reported that cats appear to have a critical period for socialization that might account for the generally asocial and solitary existence of most felines. likewise, several studies (fonberg, brudnias-stepowska, & zagrodzka, ; knowles, curtis, & crowell-davis, ; natoli & de vito, ; van den bos & de cock buning, ) have documented a significant relationship between group dominance and hostile behaviors in domestic cats. palmer ( ) makes a compelling argument in her thesis on foucault that less highly domesticated creatures (like cats) are closer to engaging in pure power rela- tionships with humans. dogs. logically, dogs, who have been domesticated since the dawn of history (an estimated , years), might be expected to assume a more submissive role to humans than do cats, who have been domesticated a scant , years. th is hypothesis has, in fact, been upheld by marder ( ) in her essay on establishing a dominance hierarchy in dog packs and by juarbe-diaz ( ) in studies of human-dog social interactions. when dogs do manifest domi- nance in play behaviors, it is typically exhibited as aggression and can reflect general attributes of their personality and their relationship with the owner (rooney & bradshaw, ). occasionally, dominance behaviors may result from competition or a perceived threat from an owner (reisner, ). in this case, from an interpersonal perspective, the pet and owner are engaging in an anti-complementarity and typically unsatisfactory interaction. in a study of the natural ethological behaviors of unowned strays, rubin and beck ( ) soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - reported that only % of the interactions between humans and stray dogs resulted in aggression or dominance behaviors. according to the authors, the more natural response of dogs roaming in unfamiliar territory was to retreat or approach a human submissively. th is finding was upheld by the non- aggressive behaviors observed by berman and dunbar ( ) in a study of free-ranging suburban dogs. th e sociability of dogs, who naturally live in pack formations, has been attributed as the source of their ability to facilitate social interactions between their owners and strangers in public places (robins, sanders, & cahill, ). th ese findings intuitively fit with the fact that peo- ple generally make internal, dispositional attributions of friendliness to dogs observed engaging in play with a human but look for external explanations for aggressive behavior in dogs (rajecki, rasmussen, sanders, modlin, & holder, ). perceptions of innate sociability and submissiveness, accurate are not, likely underlie the dog’s epithet, “man’s best friend.” th e social meaning of pets most pet owners report that they keep animals for social reasons or compan- ionship (endenburg, ‘t hart, & bouw, ). mitchener ( ) suggested that the attachment between owners and their pets can rival that between a parent and a child. unquestionably, many pet owners bond with their pets much as they would to family members (bodsworth & coleman, ; reyn- olds, ). th e quality of facilitative companionship provided by a pet has been cited as a significant predictor of the human-animal bond (bustad & hines, ). th eories of companion animal attachment although owner personality has been found to play a significant role in the development of the human/companion animal bond (bagley & gonsman, ), the quality of attachment to companion animals would appear to be independent of the type of pet (stallones, johnson, garrity, & marx, ) or of the respective attachment style of the owner (endenburg, ). rather, there seems to be a reciprocal relationship between the needs of the owner and the dispositional characteristics of the pet. studies of failed animal adoptions have consistently found that perceived behavioral problems and unrealistic human expectations of the animal were some of the most frequently cited reasons for relinquishing a pet to an animal shelter (arkow & dow, ; houpt et al., ; kidd et al., ; new et al., ). hart and hart ( ) suggested that the matching of behavioral traits common to different breeds of dogs and cats to the personality style of the owner might optimize soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - the companion animal adoption process. not only is the interpersonal fit between owner and companion animal hypothesized to predict greater attach- ment, but it also has been theorized to improve the mental health benefits of pet therapy (bustad & hines, ). purposes of the study th e intent of this study was two-fold. first, this survey explored the generaliz- ability of the interpersonal circumplex model of personality through the cross- species assessment of the dimensions agency and affiliation. second, this study analyzed interpersonal complementarity between pet owners and their com- panion animals in order to predict owners’ relative attachment and satisfaction with the human-animal bond. in sum, the goal of this study was to broaden our understanding of both human and pet personality characteristics and their roles in predicting interpersonal relationship satisfaction. th ree hypotheses were generated to this end. hypotheses hypothesis . dogs will be perceived by their owners as less hostile/more friendly and more submissive/less dominant across octant scores than cats, whereas people who identify dogs as their ideal pet (dog people) will self-report as less hostile/more friendly and less submissive/more dominant across octant scores than people who identify cats as their ideal pet (cat people). hypothesis . th ere will be greater reported interpersonal complementarity between self-identified “dog people” and their dogs (versus cats) and greater reported interpersonal complementarity between self-identified “cat people” and their cats (versus dogs). hypothesis . stronger interpersonal complementarity between owner and pet interpersonal styles will predict greater attachment to a companion animal. methods participants two hundred and sixty-six participants ( women, men; mean age . , age range - ) were recruited from an introductory psychology course at ball state university. ethnic background was as follows: % black, % cau- casian, and % other. participants were allowed to receive partial course credit for their participation. soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - procedure a total of persons participated in a confidential web-based study of inter- personal style and pet ownership. only participants who reported that they were currently pet owners and that their most recently acquired pet was a dog or a cat were selected for further analysis. materials interpersonal style. th e respondent’s interpersonal style was measured using the impact message inventory-generalized others (imi-go; kiesler, & schmidt, ), while the pet’s interpersonal style was assessed using an other- report version of the same measure completed by the owner (impact message inventory-significant other; imi-so). th e imi was a -item self-report measure of how the respondents believe other people react to them. responses were reported on a -point likert-style scale ( - ) with responses of indicat- ing low endorsement of an item and indicating high endorsement of an item. participants responded to items with reference to three statements about the individual’s style of interpersonal functioning: “when people are with me, they typically feel . . .” th e imi yielded eight, dimensional, circumplex octant scales and two general factors reflecting overall agency and affiliation. higher scores indicated higher levels of each trait characteristic. it has generally dem- onstrated good inter-rater reliability (. to . —for self and other ratings) and circumplex properties (bluhm, widiger, & miele, ; schmidt, wag- ner, & kiesler, ). interpersonal complementarity was calculated using kiesler’s ( ) suggestion to report the square root of the sums of squared deviations between complementary octants for owners and pets. companion animal attachment. attachment was measured utilizing the pet attachment survey (pas; holcomb, williams, & richards, ). th e pas consisted of questions measuring conventional companion animal attach- ment and included subscales: relationship maintenance and intimacy. for the relationship maintenance subscale, the total reliability was reported as . ; the intimacy subscale, an internal consistency of . (holcomb et al.). par- ticipants were asked to respond to the items using a -point likert-type scale ranging from (almost never) to (almost always). sample items included: “your pet comes to greet you when you arrive?” and “you confide in your pet?” items were totaled across the subscales to derive a total pet attachment score. higher scores indicated higher levels of attachment to the reported pet. pet behavior. th e pet behavior scale (pbs) was developed by the authors to assess the frequency of perceived positive pet behaviors and their respective value to the owner (figure ). items included: “how well behaved is your soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - pet?” and “how important is it to you that your pet be well behaved?” (figure ). participants were asked to respond to a -point likert-type scale ranging from (not at all) to (extremely) across a total of eight possible domains. th e mean desirability of each domain was scored across owners; likert ratings were weighted by this mean rating. higher scores indicated higher levels of endorsement of perceived, desirable pet behaviors. although test-retest reli- ability data were not available for this measure, the internal consistency (as measured by all possible split-half reliabilities) was generally high in this study with a chronbach’s alpha = . across the items. expert assessors (veteri- narians in small animal practice) deemed the measure to have strong content validity as a measure of characteristics and behaviors typically valued by com- panion animal owners. figure . th e pet behavior scale for the following questions, please rate your most recently acquired pet on the following -point scale = not at all = slightly = somewhat = moderately so = very much so = extremely = not at all = slightly = somewhat = moder- ately = very = extremely how well behaved is this pet? how important is it to you that your pet be well behaved? how affectionate is this pet? how important is it to you that your pet be affectionate? how well does the pet respond to commands? soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - how important is it to you that your pet responds to commands? how much compan- ionship does your pet give you? how important is it to you that your pet be companionable? how comforting do you find this pet’s companionship? how important is it to you that your pet be comforting? how intelligent is this animal? how important is it to you that your pet be intelligent? how entertaining or amusing did/do you find this pet? how important is it to you that your pet be entertaining or amusing? how friendly is your pet with you and/or your family? how important is it to you that your pet be friendly with you and your family? figure . (cont.) soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - results initial analyses descriptives. all statistical analyses were performed using spss ( ). a fre- quencies and descriptive analysis was run on all primary predictor and out- come variables. th ese results provide valuable information on the generalizability of the study findings. a breakdown of frequencies and mean scores for key, companion-animal variables in the current study are reported in table . fisher’s skewness values for the various measures are reported as fol- lows: pas total = . (se = . ); imi-go affiliation = – . (se = . ); imi-go agency = –. (se = . ); imi-so affiliation = – . (se = . ); imi-so agency = . (se = . ); pet behavior = – . (se = . ). according to tabachnick and fidell ( ), values of +/– two standard errors of kewness (ses) or less represent an acceptable level of kewness. th us an ses value of < . (n = ) for the current sample indicated a distribution that approached normality. demographics. select demographic and methodological variables were exam- ined to detect unpredicted relationships between possible confounding factors and the primary variables—interpersonal complementarity (imi-go and imi-so), pet behavior, and companion animal attachment (pas). th is pre- liminary analysis included participant sex, participant age, type of pet (dog/ cat), sex of pet, age of pet, length of pet ownership, time spent with the pet weekly, and pet neutered or not. with respect to owner characteristics, owner sex predicted companion animal attachment (t ( ) = – . , p < . ), per- ceptions of pet behavior (t ( ) = – . , p < . ), and complementarity (t ( ) = . , p < . ). table includes the means and standard deviations for all primary predictor and outcome variables by owner sex. women reported greater companion animal attachment, more positive perceptions of pet behavior, and greater complementarity of interpersonal style with their pets than did men. in addition, women were significantly more affiliative than were men in their interpersonal orientation (t ( ) = – . , p < . ), and also perceived their pets as more affiliative (t ( ) = – . , p < . ). several of the pet characteristics also demonstrated significant correlations with the designated predictor and outcome variables (table ). time spent with pet was positively and significantly correlated to companion animal attachment (r = . , p < . ) and perceptions of pet behavior (r = . , p < . ). th e more time spent with the pet, the greater the attachment reported for the pet and the more favorable the perceptions of the pet’s behavior. finally, there was a sig nificant relationship between the type of most recent pet acquired and perceived pet behaviors (t ( ) = – . , p < . ) as well as type soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - table . descriptives for primary predictor, outcome, and demographic variables by owner sexα men (n = ) women (n = ) variable mean s.d. mean s.d. hours spent with most recently acquired pet weekly . . . . number of reported years of ownership for most recently acquired pet . . . . reported attachment to most recently acquired pet** . . . . (pas) perceptions of positive behaviors in most recently acquired pet** . . . . owner’s self-reported inter- personal affiliation*** . . . . (imi-go) owner’s self-reported inter- personal control –. . –. . (imi-go) most recent pet’s perceived interpersonal affiliation*** . . . . (imi-so) most recent pet’s perceived interpersonal control . . . . (imi-so) interpersonal complemen- tarity between pet and owner* . . . . **α cases deleted pairwise. *** denotes significance at the . level or better. *** denotes significance at the . level or better. *** denotes significance at the . level or better. soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - of pet and complementarity (t ( ) = . , p < . ). owners whose most recent pet was a dog reported having more favorable perceptions of their pets and more complementary relationships with them. as a consequence, these variables were controlled for in subsequent regression analyses. table . descriptives for primary predictor, outcome, and demographic variables for each respondent’s most recently acquired petsα most recent pet—cat most recent pet—dog (n = ) (n = ) variable percent or mean (standard deviation) percent or mean (standard deviation) pet sex male % % female % % don’t know % % pet neutered yes % % no % % don’t know % % pet age (years) . ( . ) . ( . ) years owned . ( . ) . ( . ) hours spent with pet (weekly) . ( . ) . ( . ) pet attachment (pas) . ( . ) . ( . ) complementarity . (. ) . (. ) pet behavior scale (ratings on eight favorable traits) . ( . ) . ( . ) α cases deleted listwise main analyses previous theories of animal attachment have focused either exclusively on the behavioral qualities of the pet or personality characteristics of the human owner. th e proposed hypotheses deviate from previous theories in that they examine the human-companion animal bond from an interactionist perspective using an established model of personality—the interpersonal circumplex. statistical analy- ses, as outlined below, were intended to assess the confirmatory power of these hypotheses. soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - analyses and a manova was run on the dependent variable of owner’s perceived ratings of their cats’ and dogs’ interpersonal styles. most recent type of pet acquired (cat or dog) was a between-subjects factor. results suggested that of the eight interpersonal octants associated with the interpersonal circumplex (dominant, hostile-dominant, hostile, hostile-submissive, submissive, friendly-submissive, friendly, and friendly-dominant) there were significant differences between dogs and cats on only two. cats were rated as significantly more hostile (or distant) than dogs f ( , ) = . , p < . (ms = –. and –. , sds = . and . , respectively); dogs were rated as significantly more friendly-submis- sive than cats f ( , ) = . , p < . (ms = . and . , sds = . and . , respectively). on the overall dimension of affiliation, owners reporting on their dogs generally perceived their pets as more loving than owners reporting on their cats, f ( , ) = . , p < . (ms = . and . , sds = . and . , respectively). a post-hoc t-test further assessed the dimensional octant scores for hostile and friendly-submissive, confirming that the means for dogs and cats on the octant score for hostile did differ significantly after using bon- ferroni correction (t ( ) = . , p < . ), although the means for friendly- submissive did not (t ( ) = – . , p < . ). since the first hypothesis was partially confirmed, a second sub-sample of self-identified cat people and self-identified dog people was selected from the above-described population of dog and cat owners. th ese partici- pants identified that either a cat or a dog would be their ideal pet. it was hypothesized that dog and cat people would differ in their interpersonal styles from each other and that participants expressing a preference for a cat or a dog might have more complementary interpersonal styles with their idealized pet. in a manova, there was a main effect for the factor, ideal pet, on the dependent variable, owner’s interpersonal style. dog and cat people differed in their interpersonal characteristics in a complementary fashion to their inter- personal perceptions of dogs and cats as companion animals. findings revealed that those who reported that dogs were their ideal pet were significantly less hostile (f ( , ) = . , p < . ; ms = –. and –. , sds = . and . , respectively) and tended to be less submissive (f ( , ) = . , p < . ; ms = –. and –. , sds = . and . , respectively) than those who reported that cats were their ideal pet (although the latter relationship did not reach tradi- tional significance). a t-test (using bonferroni correction) on mean scores for the octant reflecting hostility revealed that this difference achieved significance for dog people and cat people (t ( ) = . , p < . ). th e means and stan- dard deviations for all scores across octants are reported in table . soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - table . sample means and standard deviations on the octant scales of the impact message inventory for dogs, cats, and respondents imi octant scale dogs cats people whose ideal pet is a dog people whose ideal pet is a cat (n = ) (n = ) (n = ) (n = ) m sd m sd m sd m sd dominant –. . . . –. . –. . hostile-dominant –. . –. . –. . –. . hostile* –. . –. . –. . –. . hostile-submissive –. . –. . –. . –. . submissive –. . –. . –. . –. . friendly-submissive . . . . . . . . friendly . . . . . . . . friendly-dominant . . . . . . . . control total . . . . –. . –. . affiliation total . . . . . . . . note: pairwise deletion accounted for variance in n as reported in the results. * in a t-test, the difference between dogs and cats, and dog people and cat people, achieved significance at the . level or better on this octant. a separate manova was performed to analyze the interaction between the factors—ideal pet and type of pet reported on for the dependent variable of interpersonal complementarity—to determine if people whose ideal pet was a dog would achieve greater complementarity when reporting on dogs and if people whose ideal pet was a cat achieved greater complementarity when reporting on cats. th e results did not support the proposed hypotheses. nei- ther self-reported dog people nor self-reported cat people achieved greater complementarity when interacting with their ideal pets, nor was there a main effect for the variables ideal pet and type of pet reported on. analysis hierarchical multiple regression analysis was used to examine the contribu- tions of interpersonal complementarity to companion animal attachment, controlling for demographic variables and perceptions of pet behavior. as the second hypothesis was not upheld, the full sample of people reporting on either a dog or a cat was used in this analysis. predictors were entered in two soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - blocks. since owner sex was found to affect companion animal attachment, this variable was entered as a predictor in the first block of the regression analysis. in addition, companion animal characteristics (type of pet, years owned), time spent with pet, and owner’s perceptions of pet behaviors were entered in the first block to control for these potential covariates of attach- table . intercorrelations between primary predictor and outcome variables for a population of dog and cat owners years time pet interper. attachment owned w/ pet behavior compl. years owned – . . . . * time w/ pet – . ** –. * . ** pet behavior – –. ** . ** interper. compl. – –. ** attachment – note: interper. compl. = interpersonal complementarity. * p < . . ** p < . . table . summary of hierarchical regression analysis for variables predicting companion animal attachment for dog and cat owners variable b se b β r Δr sig. change step . . . owner sex . . . type of pet –. . –. years owned . . . time with pet . . . pet behavior . . . ** step . . . interpersonal – . . –. * complementarity * p < . . ** p < . . soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - ment. interpersonal complementarity was entered in the second block to assess for the impact of this relational variable separately. according to regres- sion analyses, only the variables—pet behavior (β = . , p < . ) and comple- mentarity (β = – . , p < . )—achieved significance as predictors of companion animal attachment. more favorable perceptions of pet behavior and greater interpersonal complementarity corresponded to higher levels of attachment (tables and ). discussion th e intent of the current study was (a) to determine interpersonal characteris- tics associated with cats and dogs, as assessed by their owners and (b) to employ the circumplex model of personality to account for companion animal attach- ment. to this end, three hypotheses were tested. regarding the interpersonal characteristics of dogs and cats and their respective people, cats were rated by their owners as significantly more hostile than dogs, and dogs were rated by their owners as more friendly-submissive than cats. in addition, self-identified dog people rated themselves as significantly less hostile and less submissive than cat people. th ese findings are consistent with research published by gos- lin and bonnenburg ( ), in which cat owners were reportedly higher in neuroticism (a trait typically associated with hostility) than dog owners. th e results also confirm the theoretical underpinnings of circumplex the- ory. th is suggests that cat and dog people seek complementarity in compan- ion animals on the axes of control and affiliation. in other words, “cat people” should seek hostile/aloof pets (correspondence) who are also low on submis- siveness (reciprocity) whereas “dog people” should seek pets low on hostility (correspondence) and high on submissiveness (reciprocity). however, there were no significant main effects or interactions for ideal pet (cat or dog) and type of pet reported on for the variable interpersonal complementarity. th us, the relative success of the circumplex model in capturing the descriptive dimensions of control and affiliation for dogs and cats is mediated by its lim- ited nomothetic generalizability. th e failure to find that interacting with an idealized pet promotes greater complementarity suggests that although dogs and cats may have stereotyped, interpersonal characteristics, companion ani- mals also manifest a wide range of individual variance. it is the fit between owner needs and pet personality (rather than pet type) that best predicts com- panion animal attachment. last, it was proposed that interpersonal complementarity would contribute to greater companion animal attachment in dyadic interactions. results dem- onstrated that complementarity between the interpersonal style of an owner soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm l. e. woodward, a. l. bauer / society and animals ( ) - and that of a pet was a significant predictor of attachment to a companion animal. conclusion a primary critique of this study is the nature of the sample population, which was comprised entirely of college students and was predominantly female. as owner sex was found to predict complementarity and companion animal attachment, a replication of this study with a more diverse population would be beneficial. in addition, the number of owners who reported their most recently acquired pet was a dog outnumbered by a ratio of : those who reported their most recently acquired pet was a cat. th e analyses likely reflect these limits to power; negative findings may be due to type ii error. greater diversity in the companion animal population would also provide the basis for an evaluation of interpersonal style by breed of pet. as the current findings suggest, the interpersonal circumplex provides a new relational perspective from which to understand and predict the process of attachment to a companion animal. most important, interpersonal theory presents a conceptual paradigm by which we can assess both owner and pet personalities and expand our awareness of certain interpersonal traits that dis- tinguish dog people from cat people. understanding this difference may pro- vide insight into better matching procedures for companion animal adoptions, with greater consideration given to the interpersonal needs of the owner and the personality characteristics of an individual pet. as the cost of caring for unwanted or abandoned animals is significant, future directions for this research might examine the role of interpersonal complementarity in commit- ment level and longevity of pet ownership, as well as optimizing relational interactions in animal-assisted therapies and in the selection and training of helper animals. with this goal in mind, a simple and valid measure of nonhu- man interpersonal style would prove useful to those who care for, breed, and handle pets on a regular basis. notes . complementarity = √ ((dpet – sowner) + (hdpet – hsowner) + (hpet – howner) + (hspet – hdowner) + (spet – downer) + (fspet – fdowner) + (fpet – fowner) + (fdpet – fsowner) ). .. th e ses can be estimated using the following formula n . . th e simplest and most conservative approach is the bonferroni correction, which sets the alpha value for the entire set of η comparisons equal to α by taking the alpha value for each com- parison equal to α/η. soan , _f _ - 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( ). agency and communion as conceptual coordinates for the understanding and measurement of interpersonal behavior. in w. grove & d. cicchetti (eds.), th inking clearly about psychology: vol. . personality and psychopathology (pp. - ). minneapolis, mn: university of minnesota press. soan , _f _ - .indd soan , _f _ - .indd / / : : pm / / : : pm soan , _f _ - .indd soan , _f _ - .indd / / : : am / / : : am wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ this is the author’s version of a work that was submitted/accepted for pub- lication in the following source: travers, catherine, perkins, jacqueline, rand, jacquie, bartlett, helen, & morton, john ( ) an evaluation of dog-assisted therapy for residents of aged care facilities with dementia. anthrozoos, ( ), pp. - . this file was downloaded from: http://eprints.qut.edu.au/ / c© copyright international society for anthrozoology (isaz) notice: changes introduced as a result of publishing processes such as copy-editing and formatting may not be reflected in this document. for a definitive version of this work, please refer to the published source: http://dx.doi.org/ . / x core metadata, citation and similar papers at core.ac.uk provided by queensland university of technology eprints archive https://core.ac.uk/display/ ?utm_source=pdf&utm_medium=banner&utm_campaign=pdf-decoration-v http://eprints.qut.edu.au/view/person/travers,_catherine.html http://eprints.qut.edu.au/ / http://dx.doi.org/ . / x an evaluation of dog- assisted therapy for residents of aged care facilities with dementia catherine travers*, jacqueline perkins†, jacqui rand‡, helen bartlett§ and john morton** *centre for research in geriatric medicine, the university of queensland, woolloongabba, queensland, australia †po box , bribie island, queensland, australia ‡centre for companion animal health, school of veterinary science, the university of queensland, st. lucia, queensland, australia §monash university—gippsland campus, churchill, victoria, australia **ppo box , geelong, victoria, australia abstract although some research suggests that dog-assisted ther- apy may be beneficial for people with dementia living in residential aged care facilities, the intervention has not been adequately investigated. to address this shortcoming, we conducted a randomized controlled trial of dog-assisted therapy versus a human-therapist-only intervention for this population. fifty-five residents with mild to moderate dementia living in three australian residential aged care facilities completed an -week trial of the interventions. allocation to the intervention was random and partic- ipants completed validated measures of mood, psychosocial functioning, and quality of life (qol), both prior to and following the intervention. no adverse events were associated with the dog-assisted intervention, and following it participants who had worse baseline depression scores demonstrated significantly improved depression scores relative to partic- ipants in the human-therapist-only intervention. participants in the dog- assisted intervention also showed significant improvements on a measure of qol in one facility compared with those in the human-therapist-only group (although worse in another facility that had been affected by an outbreak of gastroenteritis). this study provides some evidence that dog-assisted therapy may be beneficial for some residents of aged care facilities with dementia. keywords: behavior therapy, dementia, dogs, residential facilities, social behavior a n th ro zo ö s d o i: . / x anthrozoÖs volume , issue reprints available photocopying © isaz pp. – directly from permitted printed in the uk the publishers by license only address for correspondence: dr catherine travers, the university of queens- land, centre for research in geriatric medicine, level , building , the princess alexandra hospital, ipswich rd, woolloongabba, queensland , australia. e-mail: catherine.travers@qut.edu.au az vol. ( ).qxp:layout / / : am page dementia is a leading cause of disability in later life (the world health organization and the world bank ) and often precipitates institutional placement in developed countries (knapp and prince ). frequently, behavioral and psychological symp- toms such as wandering, agitation, aggression, disinhibition, and apathy accompany dementia and have been reported in as many as % of patients with dementia living in residential care settings (ballard et al. ). these symptoms not only cause distress to the individual con- cerned but negatively impact upon the quality of life of carers and co-residents, and lead to considerable stress and burn-out in care staff (gilley et al. ; astrom et al. ). although a need for effective treatments for behavioral and psychological symptoms in pa- tients with dementia is clearly evident, few such treatments have been identified. pharmacolog- ical approaches are mainly of benefit in the short-term and pose safety concerns in these patients (schneider, dagerman and insel ), and although a number of non-pharmacological approaches have been trialed, the effects are modest, at best. of the non-pharmacological a p proaches that have been investigated, dog-assisted therapy has demonstrated some promise in ameliorating these symptoms in people with dementia, with increases in pro-social behavior and decreases in agitated behavior reported (perkins et al. ). it has been suggested that dog-assisted therapy addresses the “unmet needs” of patients with dementia that underlie the behavioral and psychological symptoms (cohen-mansfield and werner ; richeson ), by introducing activities that provide meaningful activity, stimulation, pleasurable social interaction, and comfort through physical contact. however, evidence regarding the effects of dog-assisted therapy for patients with dementia is limited and only nine such studies were identified for inclusion in a recent review (perkins et al. ). the studies, however, involved relatively small numbers of participants, ranging from four to , and varied in a number of dimensions including the outcome measures used (phys- iological versus observational versus questionnaire), the setting in which the intervention was delivered (residential care versus psychiatric day hospital), the severity of dementia of the par- ticipants (mild to moderate to severe), the duration and frequency of the intervention (from one -minute session to � -hour sessions over weeks) and the mode of the intervention (resident dog versus visiting dog, delivered individually or in a group setting) (kongable, buck- walter and stolley ; walsh et al. ; batson et al. ; churchill et al. ; kanamori et al. ; mccabe et al. ; richeson ; motomura, yagi and ohyama ; sellers ). seven of the studies involved a test-retest design with only two being randomized con- trolled trials (rcts) (walsh et al. ; kanamori et al. ). so for most of these studies, it is not possible to assess the extent to which the outcomes were due to the dog or whether they might also have occurred without the dog (human-therapist-only therapy). thus, the aim of the present study was to conduct a rct of dog-assisted therapy for people with dementia living in aged care facilities using validated instruments of mood, quality of life, and psychosocial functioning, and controlling for potentially confounding variables. it was hypothesized that dog-assisted therapy would result in improvements in mood, quality of life and psychosocial functioning in residents with dementia compared with a human-therapist-only intervention. methods a multicenter rct was conducted, with participants randomly allocated to either the dog- assisted or the human-therapist-only interventions within three aged care facilities. the university of queensland human research ethics committee approved the study, and informed, written con- sent was obtained from each participant or their legal guardian, prior to commencing the study. an evaluation of dog-assisted therapy for residents of aged care facilities with dementia a n th ro zo ö s ❖ az vol. ( ).qxp:layout / / : am page travers et al. a n th ro zo ö s sample size based on logistic and resource constraints, it was estimated that approximately participants in each of three facilities could be managed in the therapy sessions, in each intervention group. accordingly, as these constraints determined sample size, no a priori sample size/power calculations were performed. participants residents from three residential aged care facilities located in and around brisbane (population . million; australian bureau of statistics ), australia, were invited to participate in the study. the facilities ranged in size from to beds, and each facility catered for residents with low- and high-care needs. no facility had a current or prior pet therapy program and none had a resident dog, although all facilities had caged parakeets. residents were eligible for inclu- sion in the study if a probable diagnosis of mild to moderate dementia of any kind was recorded in the resident’s medical record. residents with severe dementia were excluded, as participants were required to be cognitively able to complete the baseline and follow-up measures. initially, residents were deemed potentially eligible for the trial by the study psychologist, in collabo- ration with each facility’s senior recreational therapist. of those, were ineligible or did not par- ticipate. sixty-seven were enrolled in the study and randomized to a treatment group; completed the study. reasons for non-participation and withdrawal are presented in figure . procedure following consenting procedures, within each facility, participants were randomly assigned (names were drawn from a hat) to either a dog-assisted therapy group or a human-therapist- only group (control), with approximately participants in each group. prior to commencement of the study, basic demographic details were obtained from each participant (or their chart) in- cluding the length of time the participant had resided in the facility, psychotropic medications regularly taken (including antidepressants, benzodiazepines, cholinesterase inhibitors, an- tipsychotics and mood stabilizers), and whether they had owned a dog prior to entering the facility. reasons for not owning a dog were also sought; no participant identified dog allergies figure . study flowchart. az vol. ( ).qxp:layout / / : am page as a problem. the modified mini-mental state exam (mse- ms) (teng and chui ) was used to assess cognitive capacity and is a valid and reliable measure in patients with demen- tia (bravo and he´bert ). mse- ms scores range from to , and a cut-off score of has been shown to have a sensitivity of % for differentiating impaired cognition (lower scores) and intact cognition (tombaugh et al. ). questionnaire measures of quality of life, mood, and psychosocial functioning were also ad- ministered by the study psychologist one week before the study started and in the week fol- lowing its completion. the psychologist was blinded regarding the intervention received by each resident. records of participants’ attendance at each therapy session were also main- tained by the therapist to assess treatment fidelity. interventions all therapy sessions were conducted by a therapist who was a veterinarian (jp) and who was also a registered psychiatric nurse with previous experience working with people with demen- tia and in conducting small group therapy sessions. prior to implementing the interventions, the therapist received four days training in recreational therapy theory and techniques from a consultant recreational therapist experienced in conducting dog-assisted therapy for people with dementia living in residential aged care. to structure and standardize interventions, semi- structured session protocols were developed and implemented. each therapy session involved an introductory activity, general discussion, the opportunity for each participant to individually interact with the dog through play, petting and/or feeding it, and concluded by reading a short story to the group (see table for details). the human-therapist-only intervention adopted the same format but instead of a dog, an article was brought into each therapy session to stimulate discussion (e.g., an unusual insect in a bottle, a plant cutting). the interventions were conducted sequentially over an -month period. although each intervention lasted only weeks, additional time was required to establish relationships with each facility, to negotiate with them regarding the implementation of the interventions, and recruit and consent participants. sessions were conducted three times a week in fa- cility a (the first facility in which the intervention was conducted). however, based on advice from staff in that facility that the time commitment with three sessions a week was too great for both residents and facility staff, the intervention consisted of two sessions per week in facilities b and c. sessions were conducted on two non-consecutive days for consecutive weeks, with each session lasting to minutes. each facility provided a room in which to conduct the sessions, and while the control group therapy session was conducted, the therapy dog was housed in a covered crate in an adjoining secure area; control group participants did not have any contact with the dog. therapy dogs three dogs (miniature poodle, staffordshire terrier, german shepherd) owned by the thera- pist were used, and were either delta society (australia) accredited (two dogs) or accredited by the consultant therapist. all dogs were fully vaccinated and in good physical health. only one dog was present at a therapy session, and the dogs were used in a rotating order to min- imize stress to the dogs. the dogs were kept on a lead for the duration of the dog-assisted therapy session, with the lead occasionally held by participants instead of the therapist, but al- ways under the supervision of the therapist. participants were advised to wear long sleeves and trousers to minimize the possibility of skin tears or bruising from dog contact. an evaluation of dog-assisted therapy for residents of aged care facilities with dementia a n th ro zo ö s az vol. ( ).qxp:layout / / : am page outcome measures participants’ quality of life (qol) was assessed using the quality of life-alzheimer’s disease (qol-ad) (logsdon et al. ), a brief, psychometrically sound, -item measure developed for use with individuals with dementia that can be reliably completed by individuals with a mmse score of more than (logsdon et al. ). issues assessed include relationships with travers et al. a n th ro zo ö s table . example of a session plan: dog-assisted therapy and human-therapist-only interven- tions.* dog-assisted therapy session plan: seat each participant and apply name tag, greet each participant by name, introduce myself (jp) and the dog, address the group and briefly state why i (jp) am here and they are helping me learn, take dog to each participant, and allow participant to offer small supplied food treat and pet and talk to dog, dog can remain either sitting with, or on lap of, a participant throughout the remainder of the session (rotate), depending on willingness of participants and dog, draw attention to the dog’s name, mention how the dog got its name, and ask participant to name as many other dog names beginning with the same letter as they can, pass an item around e.g., gloves, scarf, hat. ask “what is this item, tell me about one you had, and why is it useful?” discuss, volunteer participants to dress-up dog with supplied outfit (e.g., super dog outfit, fur-lined small coat, jumper, scarf), dog’s history/news e.g., pound dog, recent dog sporting competitions, display relevant dog breed from dog encyclopedia and briefly discuss breed attributes, read short story from “chicken soup for the dog lover’s soul” or poetry about dog(s) or human–animal relationships, writing poetry: for three participants, construct poem about their dog prompted by my lines e.g., “golly (one of the therapy dog’s names) is furry, (human therapist name) loves golly, golly likes to play ball ... what was your dog’s name?” (any animal subject will suffice, or if no prior pet ownership, construct the participant’s poem around a person they were close to), thank each participant by name for attending and remind them of the day and time of the next session. human-therapist-only session plan: seat each participant and apply name tag, greet each participant by name, introduce myself (jp) individually to each participant and touch them gently on the lower arm, if appropriate, address the group and briefly state why i (jp) am here and they are helping me learn, draw attention to my name, mention a nick-name, and ask participants to name as many other names be- ginning with the letter “j” as they can, and encourage them to offer some of their own nick-names and ex- plain how those nick-names came about, mention my family or friend’s history/news e.g., recent events, show relevant materials such as photos or other mementos. invite participants to mention any recent special events (birthdays, anniversaries etc), pass an item around e.g., scarf, hat. ask “what is this item, tell me about one you had and why is it useful?” display and pass around an interesting insect in a jar or fresh flower/plant cutting, display an impressive tree from tree encyclopedia and briefly discuss attributes, read short story from “chicken soup for the soul” or poetry about human relationships, writing poetry: for three participants, construct poem about their loved ones prompted by my lines e.g., “ron is my friend, jp loves ron, ron likes to go for walks and work with timber ... what was your friend’s name?” thank each participant by name for attending and remind them of the day and time of the next session. *all sessions adopted this format although topics and activities varied to maintain participant’s interest. az vol. ( ).qxp:layout / / : am page family and friends, physical health, mood, financial concerns, and overall qol, and each item is rated using a -point scale, from (poor) to (excellent). total scores range from to , with higher scores indicating better qol. the medical outcomes study -item short form health survey version . (sf- ; mchorney et al. ) was also administered to participants as a broader measure of self-re- ported health-related qol. the sf- is a psychometrically sound, -item instrument with eight subscales: physical functioning, role limitations due to physical health problems, bodily pain, social functioning, general mental health (psychological distress and psychological well- being), vitality (energy/fatigue), role limitations due to emotional problems, and general health perceptions. raw scale scores are transformed to a to scale, with higher scores re- flecting better health status. the sf- has been used extensively and has been previously used with frail, older patients with dementia (cohen et al. ). high levels of internal consistency (� = . – . ; shadbolt, mccallum and singh ) and test-retest reliabilities for each subscale have been reported (sanson-fisher and perkins ). the geriatric depression scale short form (gds-sf; sheikh and yesavage ), a - item self-report measure of depression, was also administered. it is suitable for use in people with a mmse of or greater (royal australian college of general practitioners ), and scores range from to , with scores of or more suggestive of depression. the gds-sf has been found to correlate significantly with major depression (p < . ), and the sensitiv- ity and specificity of the gds-sf has been reported to be . % and . %, respectively, using a cut-off of (friedman, heisel and delavan ). residents’ psychosocial functioning and behavior was measured using the multidimensional observational scale for elderly subjects (moses; helmes, csapo and short ). the scale consists of items that yield five subscales measuring self-care (the ability to independently bathe and groom oneself), disoriented behavior, depressed/anxious moods, irritable behavior, and withdrawn behavior. each item is rated on a -point likert scale ( – ), with lower scores re- flecting better functioning (subscale scores range: – ). the moses has sound psychometric properties, with inter-rater reliabilities of . – . and internal consistency reliabilities of . – . reported for the five subscales (helmes, csapo and short ). facility staff completed the moses for each participant. they were not blinded to participants’ group status. data analyses outcome scores were treated as continuous (interval) data. for each measure, mean scores following therapy were compared between the two groups using multivariable linear regres- sion, using stata version (statacorp, college station, tx, usa), with facility fitted as fixed effect. covariates were fitted and retained in the model if either the regression coefficient for therapy group changed and/or the standard error for this coefficient reduced by non- negligible amounts. when analyzing variables other than sf- measures, covariates assessed were the baseline value for the same measure, baseline moses depression subscale score, and mar- ital status (currently married or not), in that order. when analyzing sf- measures, covariates assessed were the baseline value for that measure, baseline moses depression subscale score, marital status, and baseline sf- bodily pain subscale score, in that order. once this model was finalized, to assess whether the effects of therapy differed by facility, interactions between therapy group and facility were assessed, with facility fitted as a fixed effect; both in- teraction terms (one for each of facilities b and c) were retained if the joint p-value based on a partial f-test was low. to assess whether the effects of therapy differed by baseline scores, an evaluation of dog-assisted therapy for residents of aged care facilities with dementia a n th ro zo ö s az vol. ( ).qxp:layout / / : am page the interaction between therapy group and baseline scores for the same measure fitted as continuous variables was then assessed in the same way with baseline scores also fitted as a main effect. as there was evidence of an interaction between baseline moses depression score and therapy group, effects of therapy (dog-assisted therapy relative to human-therapist- only therapy) were reported at three arbitrary depression scores to represent low (mean minus sd), moderate (mean), and high baseline values (mean plus sd) on this continuum while avoiding extreme values. although the alternative hypothesis was a one-sided question, the possibility that dog-assisted therapy has adverse effects could not be eliminated, so two-sided p-values were used throughout. results participant characteristics nineteen residents from facility a, from facility b, and from facility c completed the study, and key characteristics of the two groups are presented in table . the mean age of participants was years, and they had lived in the facility an average of . years. partici- pants’ baseline scores on measures of cognitive functioning, psychosocial functioning, and travers et al. a n th ro zo ö s table . demographic and other key characteristics of the dog-assisted therapy and human- therapist-only groups at baseline. dog-assisted human-therapist-only therapy therapy (n = ) (n = ) age (years) m = . ; sd = . m = . ; sd = . gender male ( . %) ( . %) female ( . %) ( . %) years in facility m = . ; sd = . m = . ; sd = . number of medications (average) m = . ; sd = . m = . ; sd = . number regularly taking behavior modifying drugs ( . %) ( . %) number regularly taking: cholinesterase inhibitors ( . %) ( . %) antidepressants ( . %) ( . %) benzodiazepines ( . %) ( . %) antipsychotics/mood stabilizers ( . %) ( . %) marital status widowed ( . %) ( . %) married ( . %) ( . %) divorced ( . %) never married ( . %) no answer ( . %) level of education primary school ( . %) ( %) high school ( . %) ( . %) trade certificate ( . %) ( . %) previous dog ownership yes ( . %) ( %) no ( . %) ( . %) don’t know ( . %) ( . %) az vol. ( ).qxp:layout / / : am page qol are presented in table . mse- ms scores were indicative of mild-moderate cognitive impairment, and the gds-sf indicated low levels of depression. participants’ scores on the sf physical functioning subscale were low relative to australian age-based population norms (australian bureau of statistics ), indicating poor physical functioning (the normative sf physical functioning score was / for australian adults aged years and older, compared with means of and for participants in the dog-assisted and human-therapist-only groups, respectively). their remaining subscale scores were consistent with mean scores for their age group (australian bureau of statistics ). their moses subscales scores indicated that, on average, both groups required some supervision with self-care activities, had mild- moderate levels of withdrawn behavior and disorientation, and relatively low levels of irritability. attendance at therapy sessions attendance at therapy sessions of participants completing the study was high in both groups, with the percentage attendance averaging % for participants in the dog-assisted therapy group and % for those in the human-therapist-only intervention. effects of dog-assisted therapy participants’ post-therapy scores for each outcome measure, and estimated effects of dog- assisted therapy relative to human-therapist-only therapy are shown in table . no adverse events (skin tears, bruising, skin irritation) were associated with dog-assisted therapy. after therapy, the mean qol-ad score in the dog-assisted therapy group was significantly higher (better) than in the human-therapist-only group (p = . ) in one facility (facility b), but an evaluation of dog-assisted therapy for residents of aged care facilities with dementia a n th ro zo ö s table . baseline scores of the dog-assisted therapy and human-therapist-only groups on measures of cognition, quality of life, and psychosocial functioning (< indicates better func- tion is associated with lower scores, and > indicates that higher scores are better). measure dog-assisted therapy human-therapist-only (n = ) therapy mean (sd) (n = ) mean (sd) mse- ms (>, scale – ) . ( . ) . ( . ) range = – range = – qol-ad (>, scale – ) . ( . ) . ( . ) gds-sf (<, scale – ) . ( . ) . ( . ) moses subscales (<, scale – ) self-care . ( . ) . ( . ) disoriented . ( . ) . ( . ) depression . ( . ) . ( . ) irritability . ( . ) . ( . ) withdrawn . ( . ) . ( . ) sf- subscales (>, scale – ) physical functioning . ( . ) . ( . ) role limitations due to physical health problems . ( . ) . ( . ) bodily pain . ( . ) . ( . ) general health perceptions . ( . ) . ( . ) vitality . ( . ) . ( . ) social functioning . ( . ) . ( . ) role limitations due to emotional problems . ( . ) . ( . ) mental health . ( . ) . ( . ) az vol. ( ).qxp:layout / / : am page travers et al. a n th ro zo ö s table . post-therapy scores and estimated effects of dog-assisted therapy relative to human- therapist-only therapy. participants’ scores for each outcome measure, and estimated effects of dog-assisted therapy relative to human-therapist-only therapy are shown. where there was a significant interaction between therapy group and baseline value, that is, the magnitude of change in scores differed depending on baseline value (with or without a difference in direction), separate estimated changes are shown, otherwise estimated changes pooled across all base- line values are shown. adjusted estimates indicate how much better or worse participants were who received dog-assisted therapy compared with predicted scores if they had received human-therapist-only therapy. measure post-therapy scores effect of dog-assisted therapy mean (sd) (relative to human-therapist-only therapy) dog-assisted human-therapist- adjusted estimate p-value therapy only therapy ( % ci) (n = ) (n = ) qol-ad (>, scale – ) facility a . ( . ) . ( . ) – . (– . to . )* . facility b . ( . ) . ( . ) . ( . to . )* . facility c . ( . ) . ( . ) – . (– . to – . )* . gds–sf (<, scale – ¥¥) . ( . ) . ( . ) . (– . to . )** . moses subscales (<, scale – ) self-care . ( . ) . ( . ) – . (– . to . )¶ . disoriented . ( . ) . ( . ) . (– . to . )¶¶ . depression baseline score¥: . ( . ) . ( . ) . (mean minus sd) . (– . to . ) . . (mean) – . (– . to . ) . . (mean plus sd) – . (– . to - . ) < . irritability . ( . ) . ( . ) – . (– . to . )¶¶¶ . withdrawn . ( . ) . ( . ) – . (– . to . )¶¶¶¶ . sf subscales (>, scale – ) physical functioning . ( . ) . ( . ) . (– . to . )# . role limitations due to physical health problems . ( . ) . ( . ) . (– . to . )## . bodily pain . ( . ) . ( . ) – . (– . to . )### . general health perceptions . ( . ) . ( . ) – . (– . to . )#### . vitality . ( . ) . ( . ) – . (– . to . )^ . social functioning . ( . ) . ( . ) . (– . to . )^^ . role limitations due to emotional problems . ( . ) . ( . ) . (– . to . )^^^ . mental health . ( . ) . ( . ) . (– . to . )^^^^ . *adjusted for baseline qol-ad and baseline moses depression subscale; **adjusted for baseline gds-sf. ¶adjusted for baseline moses self-care subscale; ¶¶ adjusted for baseline moses disoriented subscale; ¶¶¶adjusted for baseline moses irritability subscale and current marital status; ¶¶¶¶adjusted for baseline moses withdrawn subscale and current marital status. #adjusted for baseline sf- physical functioning and bodily pain subscales and current marital status; ##adjusted for baseline sf- physical health problems and bodily pain subscales and current marital status; ###adjusted for baseline sf- bodily pain subscale, baseline moses depression subscale and current marital status; ####adjusted for baseline sf- general health perceptions and bodily pain subscales and current marital status. ^adjusted for initial sf- vitality and bodily pain subscales, baseline moses depression subscale and current marital status; ^^adjusted for baseline sf- social functioning and bodily pain subscales, baseline moses depression subscale and current marital status; ^^^adjusted for baseline sf- role limitations due to emotional az vol. ( ).qxp:layout / / : am page was significantly lower (p = . ) in another (facility c; significance of interaction p < . ). importantly, there was an outbreak of gastroenteritis in facility c in the final week of the inter- vention (week ) that affected many of the participants and may have negatively influenced their outcome scores. relative to the human-therapist-only intervention, moses depression subscale scores fol- lowing therapy were moderately lower (better) in participants in the dog-assisted therapy group with higher (worse) baseline scores, but not in those with low baseline scores (p = . ) (see table ). no significant differences post-therapy between the dog-assisted and the human- therapist-only interventions were observed for any of the remaining measures (see table ). discussion this rct of dog-assisted therapy for people with dementia living in aged care facilities demon- strated that participants who received dog-assisted therapy had better depression scores on one measure of depression in those with worse baseline depression scores, and improved qol scores in one facility (facility b) but worse in another (facility c). importantly, there was an outbreak of gastroenteritis in facility c in week of the intervention, and this may have negatively affected participants’ qol-ad scores, although it is not known which participants were affected by the illness. overall, these findings are compatible with the hypothesis that dog-assisted therapy ad- dressed some of the unmet needs of participants by providing meaningful activity, stimulation, pleasurable social interaction, and comfort through physical contact. this theory is supported by one participant who commented: “seeing the dog makes me feel good; not so lonely.” enjoy- ment and engagement in novel, stimulating activity may account for the improved depression scores in participants in the dog-assisted therapy group which may in turn, underlie the ob- served improvement in qol-ad scores in facility b. addressing unmet needs through the in- troduction of a novel, mentally stimulating activity and attention from the therapist may also account for the improvement in vitality scores in the human-therapist-only group, and the find- ing that empathic human attention provides therapeutic benefits in this population has been documented previously (cohen-mansfield and werner ). it is likely that the two interventions addressed a range of needs that varied among participants, and those who really liked dogs might have derived more enjoyment and benefited more from dog-assisted therapy than other participants, while the human-therapist-only intervention might have suited other participants better. previous studies have demonstrated marked differences in the responses of patients with dementia to psychosocial interventions, with interventions specifically tailored to address the re- cipient’s specific preferences being more effective than those that do not (o’connor et al. ). the variability in findings across facilities in the present study also suggests that the facility in which the intervention is implemented may have important modifying effects. for example, an evaluation of dog-assisted therapy for residents of aged care facilities with dementia a n th ro zo ö s problems and bodily pain subscales and current marital status; ^^^^adjusted for baseline sf- mental health subscale, baseline moses depression subscale and current marital status. ¥significant interaction between therapy group and baseline score so effects of therapy were assessed at mean baseline value ( . ) minus one sd ( . ), at the mean value, and at the mean value plus one sd. <indicates better function is associated with lower scores, and > by higher scores; adjusted estimates indicate how much better or worse participants were that received dog-assisted therapy compared to predicted scores if they had received human only therapy (that is, adjusted estimates do not indicate how much better partici- pants would have been from their initial baseline scores). ¥¥scores greater than are suggestive of depression and scores greater than indicate that depression is likely. az vol. ( ).qxp:layout / / : am page participants in the dog-assisted therapy group showed improved qol scores in facility b, but declined on this measure in facility c. hence, facility characteristics should be considered in further studies of this kind, and further research is required to identify features of facilities that may influence the effectiveness of a therapeutic intervention. strengths of the study the strengths of this study include its large sample size relative to previous studies of dog- assisted therapy in this population, and the random allocation of participants to the interven- tions, allowing the treatment to be rigorously evaluated without risk of confounding by factors that may vary across time, a major limitation of test-retest studies. additional strengths of this study include the assessment of potentially confounding variables including the use of psy- chotropic medications that may influence mood and functioning, previous dog ownership, and other important demographic and psychological variables. in addition, validated measures of mood, psychosocial functioning, and qol were used, and were administered by a psy- chologist who was blinded regarding group allocation. with the exception of the dog, both groups received a standardized semi-structured intervention delivered by the same therapist, and a high level of attendance at therapy sessions by participants suggests a high level of treatment fidelity. the possibility of contamination effects were minimized by ensuring the human-therapist-only group did not have any dog contact. limitations of the study the outbreak of gastroenteritis that occurred in facility c during week of the interven- tion is an important threat to the validity of the treatment delivered and may have influenced the results. participants may have engaged less in therapy sessions if they felt unwell, and although illnesses such as this regularly occur in residential aged care facilities, it was out- side our control. in hindsight, it may have been better to reschedule the final session to another time; this highlights the importance of being flexible when conducting interventions in this setting. there is the possibility of selection bias, as approximately % of participants were lost to follow-up. however, as the proportions of participants that withdrew or were lost to follow- up were similar for both groups, we consider the impact of any such bias to be relatively small. the non-blinding of facility staff who completed the moses questionnaire for partici- pants may have also introduced some measurement bias. for instance, staff may have sub- consciously expected improvement in participants’ behavior from participating in a therapeutic activity, and consequently perceived improvement. however, it was imperative that the moses be completed by someone with good knowledge of participants’ function- ing and behavior. finally, it is possible that we failed to detect some true effects of dog- assisted therapy relative to human-therapist-only therapy due to imprecise effect estimates, insensitivity of the measures used, or insufficient power to detect treatment effects (if they ex- isted). in addition, the relatively low prevalence of behavioral problems including depression and irritability in participants at baseline may have limited the potential for improvement. how- ever, resource limitations precluded undertaking a larger study. additional studies, ideally using larger sample sizes (although challenging in this population) are required to further assess the effects of dog-assisted therapy in this population and to assess the validity of our findings, which, if confirmed, have important implications for both residents with dementia and aged care facility staff, as even a slight reduction in residents’ care requirements is likely to reduce the burden of care experienced by staff. travers et al. a n th ro zo ö s az vol. ( ).qxp:layout / / : am page conclusions we conclude that dog-assisted therapy appears to be beneficial for some residents of aged care facilities with mild to moderate dementia. the results have important implications for both residents with dementia and staff in aged care facilities. because of the importance of identi- fying effective treatments for patients with dementia, especially those with severe behavioral and psychological symptoms, further investigation of dog-assisted therapy for this population is warranted. this will assist in better identifying those who are most likely to benefit, so that the intervention can be tailored for, and directed to, this group. the impact of therapy also appeared to be influenced by facility characteristics; this requires further investigation. acknowledgement we acknowledge the financial support provided by the jo & jr wicking trust that made this study possible. references astrom, s., karlsson, s., sandvide, a., bucht, g., eisemann, m., norberg, a. and saveman, b-i. . staff’s experience of the management of violent incidents in elderly care. scandinavian journal of caring sciences ( ): – . australian bureau of statistics (abs). . national health survey: sf- population norms. 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(catalogue number . ). canberra: abs. ballard, c., o’brien, j., james, i. and swann, a. . dementia: management of behavioral and psychological symptoms. oxford: oxford university press. batson, k., mccabe, b. w., baun, m. m. and wilson, c. c. . the effect of a therapy dog on socialization and physiological indicators of stress in persons diagnosed with alzheimer’s disease. in companion animals in human health, – , ed. c. c. wilson and d. c. turner. thousand oaks, ca: sage publications. bravo, g. and he´bert, r. . reliability of the modified mini-mental state examination in the context of two-phase community prevalence study. neuroepidemiology : – . churchill, m., safaoui, j., mccabe, b. w. and baun, m. m. . using a therapy dog to alleviate the agitation and desocialization of people with alzheimer’s disease. journal of psychosocial nursing and mental health services : – . cohen, h. j., feussner, j. r., weinberger, m., carnes, m., hamdy, r. c., hsieh, f., et al. . a controlled trial of inpatient and outpatient geriatric evaluation and management. new england journal of medicine : – . cohen-mansfield, j. and werner, p. . management of verbally disruptive behaviours in nursing home residents. journal of gerontology a: m – . friedman, b., heisel, m. j. and delavan, r. l. . psychometric properties of the -item geriatric depression scale in functionally impaired, cognitively intact, community-dwelling elderly primary care patients. journal of the american geriatric society ( ): – . gilley, d. w., whalen, m. e., wilson, r. s. and bennett, d. a. . hallucinations and associated factors in alzheimer’s disease. journal of neuropsychiatry and clinical neurosciences : – . helmes, e., csapo, k. and short, j. . standardisation and validation of the multiple observation scale for elderly subjects (moses). journal of gerontology : – . kanamori, m., suzuki, m., yamamoto, k., kanda, m., matsui, y., kojima, e., fukawa, h., sugita, t. and oshiro, h. . a day care program and evaluation of animal-assisted therapy (aat) for the elderly with senile dementia. american journal of alzheimer’s disease and other dementias : – . knapp, m. and prince, m. . dementia uk: the full report. http://www.alzheimers.org.uk/site/scripts/ download_info.php?fileid= . accessed on december , . kongable, l. g., buckwalter, k. c. and stolley, j. m. . the effects of pet therapy on the social behavior of institutionalized alzheimer’s clients. archives of psychiatric nursing : – . logsdon, r. g., gibbons, l. e., mccurry, s. m. and teri, l. . quality of life in alzheimer’s disease: patient and caregiver reports. journal of mental health and aging : – . an evaluation of dog-assisted therapy for residents of aged care facilities with dementia a n th ro zo ö s az vol. ( ).qxp:layout / / : am page http://www.alzheimers.org.uk/site/scripts/ lodgson, r. g., gibbons, l. e., mccurry, s. m. and teri, l. . assessing quality of life in older adults with cognitive impairment. psychosomatic medicine : – . mccabe, b. w., baun, m. m., speich, d. and agrawal, s. . resident dog in the alzheimer’s special care unit. western journal of nursing research : – . mchorney, c. a., ware, j. e., lu, j. f. r. and sherbourne, c. d. . the mos-item short form health survey (sf- ). medical care : – . motomura, n. y., yagi, t. and ohyama, h. . animal assisted therapy for people with dementia. psychogeriatrics : – . o’connor, d. w., ames, d., gardner, b. and king, m. . psychosocial treatments of behavior symptoms in dementia: a systematic review of reports meeting quality standards. international psychogeriatrics ( ): – . perkins, j., bartlett, h., travers, c. and rand, j. . dog assisted therapy for people with dementia: a review. australasian journal of ageing : – . richeson, n. e. . effects of animal-assisted therapy on agitated behaviors and social interactions of older adults with dementia. american journal of alzheimer’s disease and other dementias : – . royal australian college of general practitioners (racgp). . medical care of older persons in residential aged care facilities. www.racgp.org.au/silverlinebooksonline/ - .asp. accessed on july , . sanson-fisher, r. w. and perkins, j. j. . adaptation and validation of the sf- health survey for use in australia. journal of clinical epidemiology : – . schneider, l. s., dagerman, k. s. and insel, p. . risk of death with atypical antipsychotic drug treatment for dementia: meta-analysis of randomized placebo-controlled trials. journal of the american medical association : – . sellers, d. m. . the evaluation of an animal assisted therapy intervention for elders with dementia in long- term care. activities, adaptation and aging : – . shadbolt, b., mccallum, j. and singh, m. . health outcomes by self-report: validity of the sf- among australian hospital patients. quality of life research : – . sheikh, j. l. and yesavage, j. a. . geriatric depression scale (gds): recent evidence and development of a shorter version. clinical gerontology : – . teng, e. and chui, h. . the modified mini mental state exam ( ms). journal of clinical psychiatry : – . the world health organization and the world bank. . the global burden of disease: a comprehensive assessment of mortality and disability from disease, injuries and risk factors in projected to . cambridge ma: harvard university press. tombaugh, t. n., mcdowell, i., kristjansson, b. and hubley, a. m. . mini-mental state examination (mmse) and the modified mmse ( ms): a psychometric comparison and normative data. psychological assessment : – . walsh, p. g., mertin, p. g., verlander, d. f. and pollard, c. f. . the effects of a “pets as therapy” dog on persons with dementia in a psychiatric ward. australian occupational therapy journal : – . travers et al. a n th ro zo ö s az vol. ( ).qxp:layout / / : am page http://www.racgp.org.au/silverlinebooksonline/ - .asp wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ anthrozoos volume . issue pp - reprints available directly from the pubushers photocopying permitted by ucense only oisaz a pfflrjted in the uk addrass for correspondedce: trevor stokes. ph.d., po box . land o'l^es.fi - , usa- e-mail: social effects of a dog's presence on children with disabilities stephanie walters esteves and trevor stokes department of child & family studies. university of south florida. usa abstract productive and positive interactions idetween dogs and humans have been documented in studies using dogs trained as companion animais and as assistants for peopie with disabilities, in this study, the effects of the presence of a dog on social interactions between three - -year-old children with developmental disabilities and their teacher at an elementary school were analyzed. a single-case experiments design with repeated measures and with replicated effects across participants was employed to assess changes in interactions from baseline to an intervention condition. during baseline, inter- actions were assessed in the social environment of a room adjacent to the classroom, which had a toy dog and other piay materials, during time with the teacher the experimental change introduced sequentially and systemat- ically across the participants was the additional presence of an obedience- trained dog, a german shepherd/labrador retriever cross, interactions between the children and their teacher were examined during morning sessions using reliable direct observation interval recording procedures. all participants demonstrated an increase in overall positive initiated behaviors (verbal and non-verbal) toward both the teacher and the dog. the children also showed an overall decrease in negative initiated behaviors. in addition, observational ratings showed positive generalization of improved social responsiveness by the children in their classroom following the completion of the experimental sessions, this study supports the position that children with developmental disabilities benefit from the use of skilled dogs as teaching assistants and therapeutic adjuncts. keywords: developmental disabilities, dogs, generalization, school, social effects m dogs are versatile creatures, both as friends and as workers. historically, they have been bred to perform many duties such as hunting, herding, protecting livestock and property, and haul- ing sleds. more recently, dogs have been trained as companion animals and assistants for people with disabilities. this growing interest has social effects of a dog's presence on children with disabililties included research on the effects of the presence of animals as adjuncts to therapy. reports of the positive effects of animals in therapeutic situations include children (hansen et al. ); individuals with physical (eddy, hart and boltz ), emotional {kaminski, pellino and wish ) or psychiatric impairments {marr et al. ); individuals with developmental disabili- ties (limond. bradshaw and cormack ) or pervasive developmental disorders (redefer and goodman ; martin and farnum ); the elderly (fick ; crowley-robinson, fenwick and blackshaw ); adults with substance abuse (marr et. al. ); and prison- ers (waish and mertin ). even though these studies show positive outcomes, the scientific basis of the conclusions is variable, with only a fevw quantitative studies with sound experimental designs reported. the effects of pet therapy and play therapy on hospitalized children with chronic med- ical disorders were examined by kaminski, peliino and wish ( ), a mood rating scale completed by the parent/caregiver contained rtems relating to the dimensions of happy scared, lonely, and relaxed, the pet therapy group was reported to be significantly happier than the play group after therapy in addition, reliable behavior observations revealed that the children in the pet therapy group also displayed significantly more positive affect and touching than the play therapy group. in a similar anaiysis, martin and farnum ( ) used a within-participants, repeated- measures design to assess prosocial interactions (behaviors reflecting engagement with the environment) and nonsocial interactions (behaviors such as hand flapping and ignoring ques- tions) during three conditions: with a ball, with a stuffed dog toy and in the presence of a live dog. therapy sessions occurred three times a week and lasted minutes each. ten children diagnosed with pervasive developmental disorder, ranging in age from to years, partici- pated in the study children who were exposed to a real dog were more focused and aware of their environments (looking at object, therapist, or dog) and displayed a more playful mood (indicated by laughing and giving treats) when in the presence of a therapy dog. children were also more likely to talk to or about the dog when in the presence of the dog. an important systematic study was conducted by limcnd, bradshaw and cormack ( ), in which eight children with down's syndrome, ranging in age from to years, participated in -minute sessions. the effects of the presence of a dog were analyzed each session during two counterbalanced experimental procedures. present in the first condition was a handler and an imitation dog similar in size, color, and texture to the live dog, along with two toys. the second condition was the same, except that it involved the handler with a real dog, who was a -year-old, male, black labrador retnever in each condition, the handler en- couraged the child to perform activities involving the test dog (real or imitation), but the child was free to interact in any way with the dog, the toys, or the handler. the results indicated that the children directed their gaze at the real dog for a significantly longer duration than they did to the therapist, imitation dog and toys, or other objects in the room. furthermore, the chil- dren did not respond to the therapist as often in the imitation-dog condition as they did in the real-dog condition. in a systematic replication of research noted above, the purpose of the present study was to objectively assess for robust effects of the presence of a dog on the positive and negative, verbal and non-verbal, social responsiveness of individual children with developmental disabilities. during sessions with the special education teacher at school, this research was conducted using a single-case experimental design with repeated measures and with replicated effects across participants (kazdin ). esteves and steves methods participants three children, two males and one female, between the ages of and years attending an exceptional student education (ese) kindergarten through second grade classroom of a pub- lic elementary school participated, the children were diagnosed as having mental retardation, two also with down's syndrome (kirsten and georgie) and one with hearing impainment (owen) (all participant names are pseudonyms). each child displayed the ability to communicate using verbalizations of a few words. written informed consent was obtained from parents prior to conducting this study, consistent with approval from the university of south horida institu- tional review board and the county schools. a certified ese teacher with a masters degree in special education conducted the ses- sions. the dog chosen for this study was an -month-old, male, german shepherd/labrador retriever cross named arrow. arrow was obedience-trained and concurrently enrolled in ther- apy dog training. he had more than one years' experience interacting with children in a spe- cial education classroom. setting experimental sessions were conducted in a room adjoining the participants' classroom. the children were allowed access to the room prior to the study to insure it was not a novel envi- ronment. the room was approximately x meters with three side-by-side windows on one wall. the room contained cabinets, bookshelves, educational materials, chairs, and toys. a video camera was set up on one of the shelves facing the child and teacher. it was turned on before the child entered the room and turned otf after the child left the room, the child and teacher sat on the floor, across from each other, with the child facing the camera. the cam- era was concealed among other items on the shelf and had a cloth draped over it to decrease the child's reactivity to being videotaped. dependent variables the social behaviors observed were categorized as positive/negative, verbal/non-verbal, and ini- tiations/responses. positive verbal statements were defined as those utterances indicating pleasure or interest in the situation (e.g.. "happy," "fun." "more," "yes") or requests for help (e.g., "help" openitig bag containing dog treat). negative vert)al statements were defined as those ut- terances indicating displeasure or disinterest in the situation (e.g., "no," "uh uh," "stop"). positive non-verbal behaviors were defined as those behaviors indicating pleasure or in- terest in the situation; for example, smiling, laughing, touching the dog by petting, hugging or kissing, clapping hands, nodding head, complying with a request non-verbally, blowing kisses, sharing or handing things to the teacher, throwing/handing treats to the dog, holding the leash, or walking the dog. negative non-verbal behaviors were defined as those behaviors indicat- ing displeasure or disinterest in the situation; for example, turning body or face away from the teacher, crying, frowning (corners of lips turned down), hiding face, attempts to or actually leaving the room, property destruction (throwing things, knocking things off shelves/table, play- ing with computer if these actions would cause damage if uninterrupted), or no response to dog-reiated questions or task suggestions. interactions were assessed as either child-initiated toward the teacher or the dog (e.g., child interacted without prompting) or teacher-prompted interactions toward the teacher or the dog (e.g., child responded to a request to perform a task with the dog or answered a question when asked). social effects of a dog's presence on children with disabiliities data collection each child participated in -minute sessions, five days per week, with the teacher. the ses- sions commenced upon arrivai at schooi foilowing breakfast, at about hours. during ex- perimental sessions, a partial interval recording was used to measure the dependent variables. this consisted of ten seconds for observation, followed by five seconds for recording the rel- evant behaviors. most sessions were scored during the session by a trained observer who was a school guidance counselor with a master's degree, was experienced with the behav- ior of ohildren with developmental disabilities, and was blind to the experimental predictions. the observer sat in the far corner of the room and remained unobtrusive and passive. when it was not possible for the observer to be present, the videotapes were reviewed and sub- sequently scored by the observer. observers were cued at the end of each timed interval using a cassette tape that signaled the elapsed time. session data were reported as the per- centage of intervals in which each targeted behavior occurred (number of intervals in which the behavior was scored divided by the total number of intervals x %). inter-observer reliability assessment inter-observer agreement was assessed by having a second trained observer present during sessions to take an independent record of the behaviors that were the dependent variables. the reliability observer was present for % of the sessions for kirsten, in % of georgie's sessions, and for % of owen's sessions, distributed across all experimental conditions. inter-observer agreement was calculated by dividing the number of agreements on behaviors by intervals by the number of agreements on behaviors by intervals plus disagreement inter- vals, and multiplying by . experimental procedures teacher training: a protocol for interactions specifying the content of the interactions with the child was given to the teacher to follow. training included direct instructions on baseline and intervention session procedures and the operational definitions of the targeted behav- iors; demonstration of baseline and intervention session procedures; role plays demon- strating two examples of each behavior (positive verbal and non-verbal behaviors, negative verbal and non-verbal behaviors, and initiations and responses); guided feedback on base- line and intervention session procedures; and corrected role play on baseline and interven- tion session procedures. role plays, feedback, and corrections were repeated until the teacher could accurately demonstrate the procedures independently with % proficienoy for two role-play scenarios. baseline: baseline sessions consisted of the presence of the teacher in the room along with toys, one of which was a toy dog. the teacher gathered the following items and placed them onthefloorforthesessioniatoykooshball, atoycar, astuffedtoydog, a dog leash, dog bis- cuits in a bag, a brush, and a dog toy. the teacher then went to the classroom and walked the child back to the session room. once in the room, the teacher asked the child to be seated in the designated area and the child was prompted: "let's play with the dog today." the teacher waited seconds for the child to initiate interactions with the toys or with the teacher. a predetermined guideline for in- teractions was used in the sessions which included questions relating to the dog such as "what color is the dog?," "do you remember the dog's name?," and tasks related to the dog such as "give the dog a treat" and "brush the dog." esteves and stokes if no interactions with the toys or with the teacher were initiated v̂ nthin seconds, the teacher asked the child a dog-related question from the protocol. the teacher waited sec- onds for a response. if no response was made, the teacher asked the child to do a task from the protocol, if there was still no response, the teacher asked the child the next dog-related question from the protocol. questions and tasks were altemated throughout the session and were not repeated within the session. sessions were discontinued if the child engaged in an attanpt to leave the room, physic^ aggression toward the teacher or dog such as grabbing, hitting, or kicking, or property de- stnjction. at the end of each session, the teacher led the child back to the classroom, intervention: following stabilization of baseline data, the second condition was introduced. the procedures for these sessions were identical to the procedures for the baseline condition, with the exception of the additional presence of the real dog. arrow. prior to beginning each session, arrow was brought to the session room while the children were out of the classroom, to avoid disruptions. intervention sessions ended with the teacher saying "tlie dog is tired, it's time to say goodbye." the teaoher then led the child back to the classroom and returned for the dog. experimental design consistent with the usual and accepted practices of applied behavior analysis, a multiple baseline design across participants was utilized to demonstrate the effects of the presence of a dog on the social interactions of the participants, as measured by the dependent vari- ables. repeated measures baseline data were taken on all three participants. in this study, stabilization of data within conditions and changes across experimental conditions were assessed by examination of the data path characteristics of the level, trend, variability, and overlap of data sequences and patterns of at least six sessions (parsonson ). inter- vention with participant one began with the stabilization of baseline data. upon the effec- tive intervention for participant one and the demonstration of stable baselines for participants two and three, intervention was then applied to participant two. again fol- lowing the stabilization of all data, intervention was applied to participant three. experi- mental control in this replicated case design is demonstrated by establishing that changes in the data of each participant systematically followed the sequential interventions at dif- ferent times after variable lengths of baseline, which controls for history, maturation, and testing (kazdin ). classroom ratings classroom-based qualitative assessments of the dependent variables were completed fol- lowing each intervention session minutes after the child returned to the classroom. based upon the same behavior definitions as used in the intervention sessions, both the classroom teacher and her instructional assistant provided qualitative ratings on a -point scale, where referred to "not at all," was "sometimes," and was "most of the time." eight questions were answered about classroom behavior following each session: ) did the child initiate positive ver- bal statements? ) did the child initiate negative verbal statements?; ) did the child initiate pos- itive non-verbal behaviors?; ) did the child initiate negative non-verbal behaviors?; ) did the child respond to a request or answer a question v^en asked using positive verbal statements? ) did the child respond to a request or answer a question when asked using negative verbal statements? ) did the child respond to a request or answer a question when asked using social eflects of a dog's presence on children with disabililties positive non-verbal behaviors? and ) did the child respond to a request or answer a ques- tion when asked using negative non-verbal behaviors? social validity an assessment of the social validity (wolf ) of the appropriateness of the procedures, the social importance of the goals, and the sooial value of the effects was conducted using a qualitative questionnaire administered to the teacher and instructional assistant following the completion of the study. questions were answered with a rating from (strongly agree) to (strongly disagree). the statements rated were as follows: this intervention was easy to use; i would reconnmend this intervention to other educators and parents; i liked the proce- dures used in this intervention; it is important to increase the social responsiveness of stu- dents with their teacher; it is important to learn new interventions to change the behavior of children with mental retardation; it is useful to examine how a child's interactions with a dog can lead to positive outcomes; i would use this intervention in the classroom setting again because it is effective; the presence of a dog led to an improvement in the social interac- tions of the children with their teacher; and this intervention was valuable for the child. results within the multiple baseline design across participants, figure presents overall child initiated positive interactions during baseline and intervention. positive initiated verbal interactions were low but stable in all three participants during the baseline condition. positive initiated verbal in- teractions had a mean of % and a range of - % for kirsten, a mean and range of % for georgie, and a mean of % and a range of - % for owen, with kirsten, as the intervention progressed a moderate increasing trend in positive initi- ated verbal interactions was noted (mean %; range - %). after the beginning of the in- tervention with georgie, consistent with the sequential interventions of a multiple baseline design, he demonstrated an immediate and substantial increase in positive initiated verbal in- teractions (mean %; range - %). after intervention, owen's positive initiated verbal in- teractions also showed a consistent increase when the dog was introduced (mean %; range - %). positive initiated non-verbal interactions were low, with some initial variability for kirsten in the baseline condition {mean % ; range ( - %). positive initiated non-verbal interactions were initially at a higher level of occurrence but displayed a olear downward trend in the base- line condition for georgie (mean %; range - %). positive initiated non-verbal interactions for owen were at a higher and stable level during the baseline condition (mean %; range - %). when the intervention was introduced, positive initiated non-verbal interactions increased substantially for all three participants: kirsten to mean %, range of - %; georgie to mean %, range - %; and owen to mean %, range of - %. the mean rating of each dependent variable is presented in table . mean ratings com- paring baseline and intervention sessions showed that there was an increase in positive ini- tiations, verbal and non-verbal, toward the teacher and the dog, on all of the assessments except with one participant, where the baseline level of non-verbal initiations with the teacher was already over % of intervals. overall positive initiations toward the teacher in- creased from a baseline mean of . % to an intervention mean of . %, whereas posi- tive initiations toward the dog increased from a baseline mean of . % to an intervention mean of . %. esteves and stokes o cl baseline kirsten intervention • positive noivveitwl o positive vertml geoigie o o owen o. o-' sessions figure . multiple baseline across participants of overall positive . ' . . interactions initiated toward the teacher and the dog. with regard to negative initiations, only kirsten had a high level of negative interactions, which were primarily non-verbal interactions with the teacher, with a baseline mean of %. these reduced to an intervention mean of % negative initiated non-verbal interactions. also with kirsten, there was an increase in negative initiated non-verbal interactions with the dog, from a baseline mean of % to an intervention mean of %. a similar increase in negative ini- tiated non-verbal interaction with the dog was seen with owen, whose baseline mean of % increased to an intervention mean of %, e.i social effects of a dog's presence on children with disabililties table . baseline and intervention mean session percentages of each dependent variable for each participant. dependent variable posilive initiated verbal interactions with teacher positive initiated non-verbal interactions with teacher positive initiated verbal interactions with dog positive initiated non-\fe[bal interactions wltti dog negative initiated v&bal interaotbns with teacher negative initiated non-verbal interactions with teacher negative initiated \ferbal interactions with dog negative initiated non-verbal interactions with dog bl % % % % % % % % kirsten int % % % % % % % % bl % % % % % % % % georgie (nt % % % % % % % % owen bl % % % % % % % % int % % % % % % % % note: bl = baseline; int = intervention inter-obsen/er agreement " the mean percent inter-observer agreement score for the measured dependent variables for each of the participants ranged from - %. tine range of the inter-observer agreement scores were as follows: positive initiated verbal interactions with the teacher was - % for kirsten and georgie and - % for owen; positive initiated verbal interactions with the dog was - % for kirsten and georgie and - % for owen; positive initiated non-verbal interactions with the teacher was - % for kirsten, - % for georgie, and - % for owen; positive initiated non-verbal interactions with the dog was - % for kirsten, - % for georgie, and - % for owen; positive verbal responses with the teacher was - % for kirsten and georgie and % for owen; positive verbal responses with the dog was % for kirsten and owen and - % for georgie; positive non-veri^al responses with the teacher was % for kirsten and owen and - % for georgie; positive non-ver- bal responses with the dog was % for kirsten and owen and - % for georgie; neg- ative initiated verbal interactions with the teacher and negative initiated veridal interactions with the dog had a range of % for all three participants. negative initiated non-veri^al interac- tions with the teacher had a range of - % for kirsten and % for georgie and owen; negative initiated non-verbal interactions with the dog had a range of % for kirsten and georgie and - % for owen; negative verbal responses with the teacher had a range of - % for kirsten and % for georgie and owen; negative verbal responses with the dog, negative non-veri^al responses with the teacher, and negative non-verbal responses with the dog each had a range of % for all three participants. classroom ratings the mean rating of each dependent variable during daily classroom observations after experimental sessions is presented in table . mean ratings comparing baseline and esteves and stokes intervention sessions showed that there was an increase in positive dimensions on % of the assessments, with an overall increase in means from . to . . there was a decrease in negative dimensions on % of the assessments, with an overall decrease in means from . to . . table . means of daily ratings during classroom generalization assessment foilowing each session. dependent variable positive initiated verbai interactions with teacher positive initiated non-vwbai interactions with teacher positive initiated verbai interactions with dog positive initiated non-\feft)al interactions with dog negative initiated veit>al interactions with teacher negative initiated non-vert ai interactions with teacher negative initiated verbal interactions with dog negative initiated non-vertsal interactions with dog kirsten bl . . . . . . . . int . . . . . . . . georgie bl . . . . . . . . int . . . . . . . . owen bl . . . . . . . . int . . . . . . . . note: bl = baseline; int = interventbn social validity ratings the social validity data, all with ratings of or . showed that both the teacher and teacherte as- sistant found the intervention to be appropriate, easy to use, and socially significant. they also strongly agreed that the intervention was effective and led to improved interactions with tiieir teacher. d i s c u s s i o n the purpose of this research was to assess the social effects of the preserx» of a dog on the ver- bal and non-verbal interactions of children with developmental disabilities toward their teacher and toward a dog at school. the study showed that the presence of the dog during sessions increased positive initiated interactions towatj the teactier and the dog for all three participants. also, when there was a high rate of occurrence of negative interacticxis, those decreased with the intervention. in addition, social validity assessment established positive ratings of procedures, go^s, and effects in this research. furthermore, qualitative evaluatbn showed generalized improvements in interac- tions with the teacher in the children's classroom folbwing sessions with the dog. the multiple baseline design across three participants was used to demonstrate the effects of the treatment in an experimentally controlled manner. the controlled outcomes were de- termined by systematically introducing the intervention to different participants, at different points in time, and showing the changes in behavior occurred systematically after intervention and not at any prior time (kazdin ). social effects of a dog's presence on children with disabililties this study supports the research by limond, bradshaw and cormack ( ) and martin and famum ( ), in which prosocial behaviors were measured under conditions including the pres- ence of a real dog. however, this study differs in design, diagnosis of participants, procedures, and operational definitions. although operational definitions of positive beha\flors vary across studies, laughing, giving treats, and talking to the dog were included in both of the prevbus studies. as with the limond, bradshaw and cormack ( ) and martin and farnum ( ) studies, this study demonstrated an increase in those behaviors for all participants when in the presence of the dog. the present study also examined the generalization of effects across settings (stokes and baer ). qualitative ratings in the classroom showed improvements, although it is impor- tant to recognize that objective and reliable observations of behavior in the classroom were not completed. although unanalyzed in terms of the factors controlling generalization, there was an important common salient stimulus present in both the intervention setting and the class- room, that is, the teacher. further evaluation of variables controlling the occurrence of gener- alization and outcomes in the natural environments of the children is warranted (stokes and osnes ). certainly, the presence of a dog may lead to stimulus generalization, but an ef- fective and well maintained program will probably require active support and intervention by teacher or therapist to provide additional consequences typically present in an interaction, in order to support generalization (redefer and goodman ). another area for future study is to look at interactions with the teacher regarding specific tasks, that is, academics, to determine if the child's academic tasks improve either as a result of the sessions or as a result of the increased positive communication with the teacher result- ing from these procedures. one parent reported that her child had begun talking much more at home during the intervention stage of this study. future studies could look at the effects of the intervention and generalization of the behaviors across various settings and times of day when working with children with developmental disabilities it is important to discover var- ious ways of teaching them effectively. this study is significant in demonstrating that the pres- ence of a dog can increase communication between a teacher and a child with developmental disabilities. these changes occurred in interaction with the teacher, separate fi'om interactions v̂ /ith the dog, and also without the teacher increasing the number of task suggestions or ques- tions directed towa'd the children during the intervention condition. this increased communi- cation can then be focused on social development, as welt as on educational tasks and learning. it would be beneficial to use dogs in schools as assistants to the school counselor, psychologist, or speech and physical therapists to assist in increasing communication, speech, or motor skills. dogs can also be used as an assistant in the classroom in teaching a specific task such as daily living skills, or as part of a curriculum such as reading, writing, story time, circle time, etc. a dog can act as the subject for creative writing, for reading stories about dogs, or can participate with children in group activities, with the dog being counted as a member of the group. this may increase participation for the children in some activities. it may not be beneficial to have a dog present throughout the school day, however, as this would be exhausting for the dog and disruptive to the children. it should also be noted that some cultural customs and some children's experiences may preclude them from being participants who may benefit from these procedures. the present study has limitations. the sample size is small, with three participants who were examined in detailed repeated measures in time se-ies in the typical manner of single-case experimental design. even though this allows assessment of generalizability through replica- ticxi across participants, the research is in need of further r^lication. effects across participants esteves and stokes were variable, although the general pattems of the data and outcomes were consistent. in these studies, a robust effect is evident visually by examination of graphs allowing assessment of reliability of effects when the probability of a type error is higher than that of a type error. in conclusion, there are few systematic studies to date on the effects of the presence of dogs on social interactions (hart ). much of the current literature is anecdotal in nature, whereas the present study documented effects of reliable data within a controlled experimen- tal design, ttiis study supports previous findings that the presence of a dog can increase com- munication and positive non-verbal behaviors, virfnioh v̂ flll enable children with developmental disabilities to recruit reinforcement from their natural environments. this study adds to the growing research literature showing that children with developmental disabilities may benefit from the use of dogs as teaching assistants and adjuncts to therapy. acknowledgements the authors would like to thank jennifer austin, holly steele, dawn gonzalez. jennifer lotti, dswu carder, debra mowery, and diane dwyer f a their thoughtful advice and dedicated assistance in the completion of this project. thanks also to arrow and the participants and their families. references crowley-robinson, p., fenwick. d. c. and blackshaw, j. k. , a long-term study otelderty people in nursing homes with visiting and resident dogs./app//ec/an/ma/se/iai/foursc/ence : - . eddy, j., hart, l and boltz, r, . the effects of service cfogs on social acknowledgement ot people in wheel- chairs. journal of psychdogy : - . rck, m, , influence of an animal on social interactions of nursing home residents in a group setting, american journal of occupation^ therapy ; - . hanson. k, m,, messinger, c. j., baun. m. and megel, m. . compyanton animals alleviating distress in children, aif/irozods : - , hart, l, a, . understanding animal behavior, species, and temp«bment as applied to interactions with specific populations. in handbook on /v}imal-asststed therapy: theoretical foundations and guidelittes for practice. nd edn, - , ed a. h. fine. burlington, ma: elsevier, kaminski, m.. pellino. t and wish, j, . play and pets: the physical and emotional impact of child-life and pet therapy on hospitalized children. children's health care ^•. - . kazdin. a, e. . single-case research designs. new york: oxford university press. limond, j, a., bradshaw, j, w. s, and cormack, k, f. m. . behavior of children with teaming disabilities interacting with a therapy dog, anthrozoos : - . marr. c. a, french, l. thompson. d., drum, l, greening, g.. morman, j., henderson. . and hughes, c. w. . animal-assisted therapy in psychiatric rehabilitation. anthrozoos : - . martin. f and famum. j. . animal-assisted therapy for children with pervasive developmental disorders. westem joumai of nursing research : - . parsonson. b, s, . visual analysis of graphs: seeing is b^teving, ]r\ a smali matter of proof: the legacy of donald m. baer. - , ed k, s. budd and t stokes. reno, nv: context press. redefer, l. a. and goodman, j, a. . pet-facilitated therapy with autistic children. joutval of autism and devdopmental disorders : - , stokes, t. f and baer. d. m. . an implicit techrk^ogy of generalization, jouma/of ./vv '̂sc/sertav'/orata/ys/s : - . stokes, t f and osnes, p. g, , an operant pursuit of gener^ization. behavior therapy : - , walsh, p. g, and mertin, p g. . tlte training of pets as therapy in a women's prison: a pilot study. anthfozo s : - , wotf, m. m, . social validity: the case for subjective measurement or how applied behavior analysis is finding its heart. jouma/o/- pp//ed g^wbf/\/ta/ys/s : - , peer-reviewed oncology & cancer research journal | oncotarget 	 			 	 	 	 		 		 	 	online issn: - 	 		 			 			 			 			 			 			search: 			 			 		 	 oncotarget 	 									 					 	 	journal content 	 		home 	editorial board 	submission 	current issue 	advance online publications 	archive 	editorial policies 	publication ethics statements 	videos with outstanding authors 	oncotarget in the news 	search 	contact information 	special collections 	 	 	 		 			 				oncotarget (a primarily oncology-focused, peer-reviewed, open access, biweekly journal) aims to maximize research impact through insightful peer-review; eliminate borders between specialties by linking different fields of oncology, cancer research and biomedical sciences; and foster application of basic and clinical science. 			 			 				its scope is unique. the term "oncotarget" encompasses all molecules, pathways, cellular functions, cell types, and even tissues that can be viewed as targets relevant to cancer as well as other diseases. the term was introduced in the inaugural editorial, introducing oncotarget. 			 			 				from january , oncotarget is a biweekly journal that is published on tuesday. 			 		 		 	 	 	 		 		subscribe to toc alerts 		 		 			 				 					 						email address 						 					 					 						 						 					 					 						 					 					 							opt in 	opt out 					 					 						 					 				 			 		 		 			 				request conference sponsorship 			 		 		 			 				sponsored conferences 			 		 	 impact journals, llc is the publisher of oncotarget: www.impactjournals.com. impact journals meets the wellcome trust publisher requirements, and is now a member of the wellcome trust list of compliant publishers. impact journals is a member of the society for scholarly publishing. 			 									 											 				 	 		current issue 		 			 												 								 			 		 		 			 				featured articles 				 					featured articles by dr lowy, the acting director of the nci ( - ), and a. levine: 					 					dlc is the principal biologically-relevant down-regulated dlc family member in several cancers. 					 						wang d, qian x, rajaram m, durkin me, lowy dr. 					 					 					 						oncotarget. jul ; ( ): - . 					 					 					dynamic changes during the treatment of pancreatic cancer. 					 							wolff ra et al. 					 					 					 						oncotarget. ; ( ): - . 					 				 			 		 	 	 editors-in-chief 			 			 				 			andrei v. gudkov 				roswell park comprehensive cancer center, buffalo, ny 			 			 					andrei v. gudkov, phd, dsci, professor and garman family chair in cell stress biology, senior vice president for basic research of roswell park comprehensive cancer center, buffalo, ny 				 				 his academic degrees in experimental oncology and molecular biology were received in former ussr from national cancer center and moscow state university. he is co-founder and chief scientific officer of cleveland biolabs, inc and tartis, inc. his area of general research interest includes drug discovery, gene discovery, molecular targets for cancer treatment. 				 			 				 				 					mikhail v. blagosklonny 				 				roswell park comprehensive cancer center, buffalo, ny 			 			 					mikhail v. blagosklonny, m.d., ph.d., professor, roswell park comprehensive cancer center, buffalo, ny 				 				dr. blagosklonny is the author of over articles in peer-reviewed journals. he has served as associate editor of  					cancer res,  					cell death differ,  					cancer biol ther,  					autophagy,  					int j cancer,  					am j pathology,  					plos one and as editor-in-chief of  					cell cycle. his research interests range from molecular and cellular biology to clinical investigations. recently, he extended the study of signal transduction pathways from cancer to aging, revealing potential targets for slowing down aging and age-related diseases. 				 			 		 		editorial board 			 			 				cory abate-shen 				columbia university, new york, ny 			 			 					cory abate-shen, phd, professor, director of research, department of pathology, associate director, herbert irving comprehensive cancer center, columbia university, ny 				 			 		 			 			 				frederick alt 				harvard medical school, boston, ma 			 			 					frederick w. alt, ph.d., member of the national academy of sciences, professor, harvard medical school 				 				dr. alt is also investigator, howard hughes medical inst., charles a. janeway professor of pediatrics, hms, scientific director, cbri institute for biomedical research.fred alt received a phd from the department of biological sciences at stanford university. 			he is a howard hughes medical institute investigator, a member of the national academy of sciences and the american academy of sciences. 			he is the recipient of he is the recipient of the excellence in mentoring award from the american association of immunologists and the clowes memorial award from the american association of cancer research. 			editorial boards: 					mol. and cell. biology; 					advances in immunology; 					international immunology; 					j. exp. med.; 					current opinion in immunology; 					immunity (founding co-editor; -present); 					molecular medicine (contributing editor; -present); 					faculty of (co-head, immunology). honors and awards: fox award, stanford univ. ( ); hirschl award ( ); searle scholar; ( ) mallinckrodt scholar; ( ); nih merit award ( ); national academy of sciences ( ); american academy of microbiology ( ); american academy of arts and sciences ( ); associate (foreign) member, european molecular biology organization ( ); excellence in mentoring award,association of immunologists ( ); american association of cancer research b.h.a. clowes award ( ); rabi shai shacknai memorial prize in immunology & cancer research ( ); leukemia & lymphoma society de villiers international achievement award ( ), pasarow foundation prize in cancer research ( ); irvington institute scientific leadership in immunology award ( ); establishment of frederick w. alt award for new discoveries in immunology by the irvington institute ( ); national cancer institute alfred knudson award in cancer genetics( ). 				 			 		 			 			 				dario altieri 				wistar institute cancer center, philadelphia, pa 			 			 					dario altieri, md, robert and penny fox distinguished professor, director, the wistar institute cancer center, executive vice president, chief scientific officer, the wistar institute, philadelphia, pa. 				 			 		 			 			 				dafna bar-sagi 				nyu school of medicine, new york, ny 			 			 					dafna bar-sagi, ph.d., professor and chair, department of biochemistry new york university school of medicine, first avenue new york, ny 				 				 					after earning her undergraduate and master's degree in biochemistry from bar-ilan university in israel, dr. bar-sagi completed a phd in cell biology at the state university of new york, stony brook (suny). she received postdoctoral training and eventually served as senior staff investigator at cold spring harbor laboratory in long island. in , she joined the faculty of the department of molecular genetics and microbiology at suny and served as department chair from - . she relocated to new york university medical center in , where she is currently professor and chair of the department of biochemistry. dr. bar-sagi has published over peer-reviewed articles in leading scientific journals. in , she was appointed chair of the scientific advisory board of the pancreatic cancer action network. 				 			 		 			 			 				jiri bartek 				institute of cancer biology, copenhagen, denmark 			 			 					jiri bartek, md., ph.d., professor, head, department of cell cycle and cancer danish cancer society, deputy director, centre for genotoxic stress research cancer institute of cancer biology, copenhagen 				 				 					he received his m.d. degree from palacky university in olomouc, and his ph.d. degree in cell biology from the institute of molecular genetics in prague, czech republic. his main research interests include the molecular mechanisms of mammalian cell-cycle control and responses to dna damage, and the cancer-predisposing aberrations of these regulatory pathways. 				 				 					jiri bartek has a total of more than publications in peer reviewed journals (about - in nature, science and cell), with over . citations. he is currently member of the editorial boards of high-medium impact biomedical journals and has won a number of awards including: ( , ) czech medical association award, ( ) elected embo member, ( ) a. benzon prize, ( ) novo nordisk prize, ( ) g.j. mendel medal, ( ) danish cancer society prize 				 			 		 			 			 				stephen baylin 				johns hopkins university, baltimore, md 			 			 					stephen b. baylin, m.d., professor, deputy director, sidney kimmel comprehensive cancer center at johns hopkins university, virginia and dk ludwig professor of oncology, baltimore, md, usa 				 				dr. stephen b. baylin is professor of oncology and medicine, director of the cancer biology program at the oncology center, and the virginia and d.k. ludwig professor of cancer research at the johns hopkins university school of medicine, and the associate director for research at the sidney kimmel comprehensive cancer center at johns hopkins. 				dr. baylin has been a member of committees of the american cancer society and the national institutes of health, and his multiple honors include a research career development award from the national institutes of health. for the last years, dr. baylin has studied the role of epigenetic gene silencing in the initiation and progression of human cancer. 			 		 			 			 				joseph r. bertino 				cancer institute of new jersey, new brunswick, nj 			 			 					joseph r. bertino, m.d., professor of medicine and pharmacology, the cancer institute of new jersey, umdnj-robert wood johnson medical school 				 				he has been an american cancer society professor since . from to , dr. bertino served as director of the yale comprehensive cancer center, including director of the center and associate director for clinical research. dr. bertino has been internationally recognized for his role in finding curative treatments for leukemia and lymphoma. dr.bertino has received several awards and honors, including the rosenthal award from the american association of clinical research, the karnofsky award from the american society for clinical oncology, and the american cancer society medal of honor. he was the founding editor of the journal of clinical oncology. currently, he is the associate editor for cancer research and clinical cancer research and also the editor of the encyclopedia of cancer. dr. bertino served as president for the american society of clinical oncology in , and president of the american association for cancer research in - . dr. bertino is the author and co-author of more than scientific publications. 			 		 			 			 				mina j. bissell 				 lawrence berkeley national laboratory, berkeley, ca 			 			 					mina j. bissell, phd, member of the national academy of sciences, distinguished scientist, life sciences division, lawrence berkeley national laboratory, berkley, ca 				 				mina bissell has been recognized for her lifetime contributions to the fields of breast cancer research, the enhanced role of extracellular matrix (ecm) and the nucleus environment to gene expression in normal and malignant tissues. these works have ushered and have changed some central paradigms that have strengthened the importance of context in the development of cancer. 			 		 			 			 				bruce blazar 				university of minnesota, minneapolis, mn 			 			 					bruce r. blazar, m.d., professor, university of minnesota, minneapolis, mn 				 				bruce r. blazar is a regents professor of pediatrics, and chief of the pediatric blood and marrow transplantation program. dr. blazar is the director of the university of minnesota's clinical and translational science institute. 			 		 			 			 				kenneth cowan 				 university of nebraska medical center, omaha, ne 			 			 					kenneth cowan, m.d., ph.d., professor, university of nebraska medical center, omaha, ne, director, eppley institute, director, unmc eppley cancer center. 				 				dr. cowan has authored more than papers for scientific journals and has been appointed by president bush to a six-year term on the national cancer advisory board to help shape cancer policy. 			 		 			 			 				carlo m. croce 				the ohio state university, columbus, oh 			 			 					carlo m. croce, md, professor, member of the national academy of sciences, director of comprehensive cancer center, chair, molecular virology, immunology & medical genetics, the ohio state university, columbus, oh 				 			 		 			 			 				chi van dang 				 johns hopkins university, baltimore, md 			 			 					chi van dang, m.d., ph.d. professor, vice dean for research, the johns hopkins university school of medicine, baltimore, md 				 				dr. dang has written more than scientific papers. he is senior editor of cancer research and serves on the editorial boards of eight other scientific publications, including the journal of molecular medicine, current cancer therapy reviews, drug discovery today: disease mechanisms, journal of clinical investigations, neoplasia, clinical and translational science and the vietnamese medical journal. elected to the national academy of sciences' institute of medicine in , dr. dang has received the national institutes of health/national cancer institute merit award and numerous other accolades. 			 		 			 			 				ronald a. depinho 				the university of texas md anderson cancer center 			 			 					depinho, md, member of the national academy of sciences, past president, the university of texas md anderson cancer center, houston, tx, and professor, department of cancer biology, the university of texas md anderson cancer center, houston, tx. 				 				 			his recent awards includes albert szent-gyrgyi prize for progress in cancer research, ; helsinki medal, ; albert einstein college of medicine distinguished alumnus award, ; american cancer society edith a. pistorino research professorship, ; member, institute of medicine of the national academies, ; aacr-g.h.a. clowes memorial award, 			 			 		 			 			 				brian j. druker 				oregon health science univ., portland, or 			 			 					 brian j. druker, md, phd, member of the national academy of sciences, professor, oregon health & science university, director, ohsu knight cancer institute, oregon health & science university 				 				 			dr. druker is the director of ohsu knight cancer institute, jeld-wen chair of leukemia research, and professor of medicine. in he won the lasker clinical award and the meyenburg cancer research prize for his influential work in the development of sti , commonly known as gleevec, for the treatment of chronic myeloid leukemia. dr. druker is an investigator of howard hughes medical institute (hhmi), and was elected to the institute of medicine of national academies in , the american association of physician in , and the national academy of sciences in . 			 			 		 			 			 				wafik s. el-deiry 				fox chase cancer center, philadelphia, pa 			 			 					 						wafik s. el-deiry, md, phd, facp 						american cancer society research professor 						professor of medical oncology 						deputy cancer center director for translational research 						william wikoff smith endowed chair in cancer research 						co-leader, molecular therapeutics program 						fox chase cancer center, philadelphia, pa 					 				 			 		 			 			 				michael a. dyer 				 st. jude children's research hospital, memphis, tn 			 			 					michael a. dyer, phd, professor/member, st. jude faculty co-leader, developmental therapeutics for solid malignancies program 				 			 		 			 			 				andrew feinberg 				 johns hopkins university school of medicine, baltimore, md 			 			 					andrew feinberg, md, mph, king fahd professor of molecular medicine department of medicine, department of oncology and department of molecular biology & genetics, johns hopkins university school of medicine 				 			 		 			 			 				dean w. felsher 				 stanford university school of medicine, stanford, ca 			 			 					dean w. felsher, md, phd, stanford university school of medicine, stanford, ca 				 			 		 			 			 				antonio giordano 				 temple university, philadelphia, pa 			 			 					antonio giordano, md, ph.d, professor and director, sbarro institute for cancer research and molecular medicine, temple university, philadelphia, pa 				 				he has published over papers on his work in the fields of cell cycle, gene therapy and the genetics of cancer. giordano has been named a knight of the republic of italy for outstanding achievements in cancer research. in september of , giordano received the philip mazzei "the bridge" award from the american university of rome for his scientific and economic contributions to the united states and italy. in the past three years, dr. giordano's work has been profiled in philadelphia magazine, philadelphia business journal, and science. 			 		 			 			 				candace s johnson 				 roswell park comprehensive cancer center, buffalo, ny 			 			 					president & ceo of roswell park comprehensive cancer center, the wallace family chair in translational research, and professor of oncology. 				 			 		 			 			 				michael karin 				 university of california, los angeles, ca 			 			 					michael karin, ph.d, member of the national academy of sciences, professor of pharmacology at the university of california, san diego (ucsd; la jolla, ca) 				 				dr. karin has received numerous awards including the oppenheimer award for excellence in research from the endocrine society, the herman beerman lectureship from the society of investigative dermatology, c.e.r.i.e.s. research award for physiology or biology of the skin, the grossman lectureship form the american gastroenterology association and an american cancer society research professorship in . dr. karin was elected to the national academy of sciences in . dr. karin also serves on several advisory boards and was cofounder of signal pharmaceuticals (currently celgene). 			 		 			 			 				scott e. kern 				 johns hopkins university, baltimore, md 			 			 					 scott e. kern, m.d., professor of oncology, johns hopkins university, baltimore, md, co-director of the kimmel cancer center gastrointestinal cancer program, everett and marjorie kovler professor of pancreas cancer research. 				 				dr. kern is a molecular geneticist interested in the clonal mutations of cancer, especially pancreatic cancer. his laboratory identified the first human smad gene, smad , as well as the first cancer mutations in smad , brca , and other genes. current interests include pharmacogenomics, mitotic instability, and the clinical significance of cancer biomarkers. 			 		 			 			 				guido kroemer 				 research director, inserm, paris, france 			 			 					guido kroemer, professor, faculty of medicine of the university of paris descartes, director of the research team "apoptosis, cancer and immunity" of the french medical research council (inserm) 				 			 		 			 			 				 john s. lazo 				uva cancer center, charlottesville, va 			 			 					john s. lazo, phd, harrison distinguished professor, departments of pharmacology & chemistry, associate director for basic science, uva cancer center; adjunct professor virginia tech carilion research institute 				 			 		 			 			 				arnold levine 				institute for advanced study, princeton, nj 			 			 					arnold j. levine, ph.d. member of the national academy, professor, the simons center for systems biology in the school of natural sciences at the institute for advanced study, princeton, nj. 				 				levine was on the faculty of the biochemistry department of princeton university from to , when he became chair and professor in the department of microbiology at the state university of new york, stony brook, school of medicine. returning to princeton university in , he was named harry c. wiess professor in the life sciences in the department of molecular biology, a position he held until . he chaired the department between and . 			he was president and chief executive officer of the rockefeller university in new york city from to , as well as heilbrunn professor of cancer biology and laboratory head until joining the institute in . the recipient of many honors including: the medal for outstanding contributions to biomedical research from memorial sloan-kettering cancer center ( ); the keio medical science prize of the keio university medical science fund, japan ( ); 			the albany medical center prize in medicine and biomedical research ( ); and the award for basic research from the surgical society of oncologists ( ). 			levine is a member of the national academy of sciences and of the academy's institute of medicine; 			he is also the author or coauthor of over scientific papers, as well as a book, viruses ( ). 			he has served as board member or adviser to numerous scientific organizations and educational institutions, among them the n.j. biotechnology institute, the american cyanamid corporation, the suny health sciences center in brooklyn, albert einstein college of medicine, the weizmann institute, the huntsman cancer center of the university of utah, and the institute for cancer research in lausanne, switzerland. 			 		 			 			 				michael p. lisanti 				 university of salford, salford, uk 			 			 					professor lisanti, m.d., ph.d. serves as the director of the manchester breakthrough breast cancer research unit and holds the muriel edith rickman chair of breast oncology within the institute of cancer sciences. he is also professor of cancer biology and the new founding director of the manchester centre for cellular metabolism (mccm). 				 			 		 			 			 				gerry melino 				 university of rome, rome , italy 			 			 					 dr. melino is full professor of molecular biology at the university of rome “tor vergata” in italy. he also currently works as programme leader for the medical research council toxicology unit, in leicester, uk. 				 			 		 			 			 				harold l. moses 				vanderbilt-ingram cancer center, nashville, tn 			 			 					harold l. moses, phd, professor, vanderbilt-ingram cancer center, nashville, tn 				 			 		 			 			 				yusuke nakamura 				 university of chicago, il 			 			 					dr. nakamura received his md and phd from osaka university, and became head of the biochemistry department, at the cancer institute, japanese foundation for cancer research in . he was appointed as a professor at the institute of medical science, university of tokyo in and the department of medicine at the university of chicago in . from january to december , dr. nakamura was special advisor to the cabinet secretary general, office of medical innovation, cabinet secretariat, government of japan. dr. nakamura received the keio medical science prize and the tomizo yoshida award of the japanese cancer association. he is a member of the association of american physicians. 				 				dr. yusuke nakamura discovered the apc (familial adenomatous polyposis) tumor suppressor. dr. nakamura plays the leading role in the field of personalized medicine. he authored scientific articles. 			 		 			 			 				joseph nevins 				 duke university, durham, nc 			 			 					joseph nevins, phd, professor, duke university, durham, nc 				 			 		 			 			 				pier paolo pandolfi 				harvard medical school, boston, ma 			 			 					 						pier paolo pandolfi, phd, professor, harvard medical school, boston, ma 				 george c. reisman professor of medicine and professor of pathology, medicine, harvard medical school 				 chief, division of genetics, dept of medicine, beth israel deaconess medical center 				 director, cancer center, beth israel deaconess medical center 				 director, cancer research institute, beth israel deaconess medical center 					 				 			 		 			 			 				nickolas papadopoulos, 				 johns hopkins university, baltimore, md 			 			 					nickolas papadopoulos, ph.d. associate professor, department of oncology, director of translational genetics, ludwig center for cancer genetics & therapeutics, sidney kimmel comprehensive cancer center, the johns hopkins institutions, crb , room , orleans street, baltimore, md 				 			 		 			 			 				arthur b. pardee ( - ) 				harvard university, boston, ma 			 			 					arthur b. pardee, ph.d, member of the national academy of sciences, professor of biological chemistry and molecular pharmacology emeritus, harvard medical school 				 				 					 it is with sadness that we share the passing of our editorial board member, arthur pardee, who died february , at the age of . dr. pardee was a renowned cancer biologist who made several groundbreaking discoveries in the mid- th century that shaped modern molecular biology. we have been honored to have dr. pardee as a founding editor of oncotarget. 				 			 		 			 			 				jeffrey pollard 				albert einstein college of medicine, bronx, ny 			 			 					jeffrey pollard, phd, professor, albert einstein college of medicine, bronx, ny 				 			 		 			 			 				carol prives 				 columbia university, new york, ny 			 			 					carol prives, ph.d, member of the national academy of sciences, professor, columbia university, new york, ny 				 			 		 			 			 				edward v. prochownik 				 children's hospital of pittsburgh, pittsburgh, pa 			 			 					edward v. prochownik, md, phd, professor of molecular genetics and biochemistry, university of pittsburgh school of medicine, director of oncology research, children's hospital of pittsburgh, pa 				 			 		 			 			 				john c. reed 				 roche holding ag, basel, switzerland 			 			 					dr. john c. reed, m.d., ph.d. has been the head of roche pharma research & early development (pred) at roche holding ag since april , . he is an adjunct professor at the university of california san diego (ucsd) department of molecular pathology, university of florida, university of central florida, and in san diego state university's biology department. 				 			 		 			 			 				neal rosen 				memorial sloan-kettering cancer center, new york, ny 			 			 					neal rosen, m.d., ph.d. is a member in the department of medicine and in the molecular pharmacology and chemistry program at memorial sloan-kettering cancer center, where he serves as head of developmental therapeutics. he is also a professor of pharmacology, cell biology and medicine at cornell university medical school. 				 			 		 			 			 				andrew v. schally 				veterans affairs medical center, miami, fl 			 			 andrew v. schally won the nobel prize for medicine or physiology in , for his research into peptide hormone production in the brain. he is currently distinguished medical research scientist of the department of veterans affairs, head of the endocrine, polypeptide and cancer institute veterans affairs medical center, research service miami, fl and south florida va foundation for research and education, distinguished leonard miller professor of pathology, professor division of hematology/oncology and division of endocrinology department of medicine, miller school of medicine, university of miami, fl. 				dr. schally was one of a pair of scientists to first isolate several of the communicating chemical links between the brain and the pituitary gland and also determined their structure and succeeded in synthesizing them. schally’s discoveries have led to many practical clinical applications that are in wide use. he has written over , publications, more than , of them since receiving the nobel prize. european & south american universities: m.d.h.c., d.h.c., d.sc.h.c., d.nat. sc. h.c. 				lasker award 				nobel prize in physiology or medicine, 			 		 			 			 				gregg l. semenza 				johns hopkins university, baltimore, md 			 			 					gregg l. semenza, m.d., ph.d, member of the national academy of sciences, professor, johns hopkins university school of medicine, baltimore, md 				 			 		 			 			 				donald l. trump 				inova schar cancer institute, fairfax, va 			 			 					donald l. (skip) trump, md, facp, is ceo and executive director of inova schar cancer institute. prior to joining inova, dr. trump was president and ceo of roswell park comprehensive cancer center in buffalo, ny. 				 			 		 			 			 				alexander varshavsky 				california inst. of technology, pasadena, ca 			 			 					alexander varshavsky, ph.d, member of the national academy of sciences, professor, california institute of technology, pasadena, ca 				 				alexander varshavsky is a recipient of the albert lasker award for basic medical research, the wolf prize in medicine and the louisa gross horwitz prize from columbia university in for his research on ubiquitination. in he won the march of dimes prize in developmental biology and he won the $ million gotham prize for an original approach to killing cancer cells. 			 		 			 			 				bert vogelstein 				johns hopkins university, baltimore, md 			 			 					bert vogelstein, m.d., member of the national academy of sciences, professor, johns hopkins university, baltimore, md 				 				bert vogelstein is a howard hughes medical institute investigator. 			he has received the gairdner foundation international award, louisa gross horwitz prize from columbia university, prince of asturias award for technical and scientific research, and other awards for his research. 			 			 		 			 			 				peter k. vogt 				the scripps research institute, la jolla, ca 			 			 					peter k. vogt, ph.d, member of the national academy of sciences professor, the scripps research institute, la jolla, ca 				 				dr. vogt is a professor in the department of molecular and experimental medicine at the scripps research institute in la jolla, california. he has received many awards and honors, including the gregor johann mendel medal, charles s. mott prize, ernst jung prize for medicine, bristol meyers award, and icn international prize in virology. dr. vogt has been invited as a distinguished lecturer by more than twenty leading research institutions in the us, europe, and asia, among them the german cancer research center in heidelberg for the meyenburg foundation lecture, the princess takamatsu foundation, the alexander von humboldt foundation of the federal republic of germany and the agency for science, technology and research of singapore. he was also elected an honorary member of the japanese cancer association and received an honorary doctorate from the university of würzburg. dr. vogt is an elected member of many prestigious academies, including the american academy of arts and sciences, the national academy of sciences, the institute of medicine of the national academies, and the american academy of microbiology. he is the recipient of the th annual szent-györgyi prize for progress in cancer research. 			 		 			 			 				paul workman 				 the institute of cancer research, london, uk 			 			 					paul workman, the institute of cancer research, london, uk 				 			 		 			 			 				zeng yixin 				 cancer center and the state key laboratory of oncology in southern china, sun yat-sen university, guangzhou, china 			 			 					dr. zeng yixin, professor and director, cancer center and the state key laboratory of oncology in southern china, sun yat-sen university, guangzhou, china.  				 				he was elected as a member of the chinese academy of sciences in . besides, professor zeng also has many other academic positions including the vice president of the china anti-cancer association, president of the board of the international society on epstein-barr virus & related diseases ( - ), a member of the third world academy of sciences, and a member of the europe-asian academy of sciences 			 		 	 	 	see full editors list » 	 		 two members of oncotarget editorial board are nobel prize winners : andrew v. schally ( physiology or medicine ); gregg l. semenza ( physiology or medicine ) 			 				since , four members of oncotarget/oncoscience/gerotarget have won the breakthrough prize, the highest prize ever: bert vogelstein, michael n. hall, alexander varshavsky, stephen j. elledge 			 		 			 			 				 oncotarget 	 spotlight during the short history of oncotarget and oncoscience, a number of our members have also joined the national academy of sciences usa, and have won lasker, nobel and other prestigious awards. oncotarget is indexed/archived on pubmed and pmc. all volumes ( - ) of oncotarget are available on pubmed » volume ( ) issues ( - ) are now on pubmed » as stated by medline reviewers on / / , "this journal continues to play a major role in the publication of important basic science research papers. editorial practices are consistently high. ethical guidelines are consistently followed. this is an important research journal for the field." impact factor (if) web of science (clarivate analytics) 	year	if	total cites 	 	 . 	 	 	 . 	 	 	 . 	 	 	 . 	 	 	 . 	 	 	 . 	 web of science update » scopus/sjr ranking: -ongoing: q (highest rank). all years q in medicine and oncology (subject area). oncotarget ranks number for total cites ( - ) among all journals in oncology. news: (june ), scopus has released its latest ratings. oncotarget is in q (highest rank). furthermore, oncotarget ranks no. for total cites ( ) in oncology. andrew v. schally, a member of the editorial board of oncotarget, a nobel prize winner in physiology or medicine: “oncotarget is an outstanding and most important journal in the field of oncology and cancer research. oncotarget is performing an extremely useful function for those of us working not only in cancer research, but also on other important topics in the field of medicine. oncotarget deserves a strong support from investigators working in the area of oncology as well as from nih.” andrew v. schally has published papers in oncotarget https://link.springer.com/article/ . /s - - - the story behind oncotarget oncotarget podcast was named among top five open-access podcasts of , https://player.fm/podcasts/open-access oncotarget.org: blog posts on new & trending papers latest articles about new and trending papers published by oncotarget oncotarget.net: blog posts on community news & events latest articles about community news and events sponsored by oncotarget copyright © impact journals, llc impact journals is a registered trademark of impact journals, llc 	home 	editorial board 	current issue 	archive 	editorial policies 	ethics statements 	videos 	oncotarget in the news 	search 	contact 	special collections 	 microsoft word - knox-ms.doc the open complementary medicine journal, , , - - x/ bentham open open access a qualitative and quantitative review of equine facilitated psychotherapy (efp) with children and adolescents j.a. lentini and michele knox* university of toledo college of medicine glendale, avenue toledo, oh , usa abstract: this paper presents a comprehensive review of the literature on equine facilitated psychotherapy (efp) with children and adolescents. methods used in efp, including traditional mounted, vaulting, husbandry, and unmounted ac- tivities are described. the theory and background of efp is summarized with references to various psychotherapeutic per- spectives, such as freudian, jungian, cognitive, behaviorist, and psychodynamic models. the status of the research is dis- cussed, and available empirical studies and reports on this topic are summarized. possible applications to patients with eating disorders, anxiety, trauma history, attention-deficit hyperactivity disorder, oppositional defiant disorder, and delin- quency are described. recommendations are made regarding the direction of future research on efp. introduction in the fifth century b.c. horseback riding was used for rehabilitating wounded soldiers [ ]. in florence night- ingale suggested, “[an] animal is often an excellent compan- ion for the sick” (p. ). for many years, animals have been used for the therapeutic benefit of humans in a variety of settings. for example, domestic animals are used to help medically ill children in hospitals and the elderly in nursing homes, but it was not until the s that horses were used in the united states for therapeutic purposes [ ]. there are many different names to describe therapeutic interactions between humans and animals. the examples listed above describe animal assisted activities (aaa) [ ]. in contrast, animal assisted therapy (aat) is more targeted; it is defined by the delta society as a “goal-directed interven- tion in which an animal that meets specific criteria is an in- tegral part of the treatment process” [ ], (p. ). in aat the therapist should have a good idea of how working with ani- mals in therapy can be different from traditional psychother- apy. the therapist and the client should have a clear under- standing of the therapeutic goals so the client does not con- fuse it with a social outing. an example of aat would be a psychotherapy session with a child in which an animal is included in the treatment. for example, dr. boris levinson, the individual often credited as the founder of animal as- sisted therapy [ ], was a child psychologist who began using this method by using his dog “jingles” to facilitate psycho- therapy with children. by the above definition, equine facilitated psychother- apy (efp) is a type of aat. specifically, efp is a planned treatment using the horse as an integral part of the psycho- therapy process [ ]. in addition to the name equine facili- tated psychotherapy, also encountered in the literature were *address correspondence to this author at the university of toledo college of medicine glendale, avenue toledo, oh , usa; tel: - - ; fax: - - ; e-mail: michele.knox@utoledo.edu the titles equine-assisted psychotherapy (eap), equine- assisted experiential therapy (eaet), equine-facilitated therapy (eft), equine-assisted learning (eal), equine- facilitated learning (efl), therapeutic riding, psychothera- peutic riding, and hippotherapy (more frequently used to describe physical rehabilitation/therapy); [ ]. in efp, therapists work with horses with different styles and using various theories. esbjorn [ ] reviewed the con- struct and found that there was a wide variety in the way therapists conceptualized efp. not only do the concepts, theories, and names surrounding efp vary, but also the methods are quite different. some therapists use un-mounted activities such as herding and leading. some use non- traditional mounted instruction such as vaulting. others pro- vide traditional riding instruction. some focus on care of the animal (husbandry). some work in groups, others work indi- vidually. many therapists use various combinations of these techniques. despite these differences, there is typically agreement in why horses are ideal for psychotherapeutic work: specific equine qualities (such as having a calming effect while re- quiring total attention to the moment), prospects for meta- phor, and relational features [ ]. the horse is a prey animal and is also distinctly social. fight or flight instincts govern the horse’s behavior. naturally living in herds, the horse is accustomed to social experiences. for these reasons, the horse pays great attention to detail. accordingly, the horse may respond to things that go unnoticed by humans. it is largely because the horse is social and has great attention for detail that it has been domesticated and trained by humans for thousands of years. during the past century, horses have been used in programs aiding persons with physical disabili- ties. riders benefit from the gentle rocking motion that may help to relax muscles and improve balance. the horse’s large size is another factor that may contrib- ute to therapeutic benefit; the horse weighs easily a thousand or more pounds. some theorists contend that the horse’s the open complementary medicine journal, , volume lentini and knox power and size provide opportunities for riders to explore issues related to vulnerability, power, and control. lastly, the straightforward nature of the horse’s interactions also may lead to therapeutic gains. the horse is not duplicitous in be- havioral interactions, and communication between horse and rider is typically clear and unencumbered [ ]. consequently, horses may be instrumental in retraining humans in direct, honest communication. method this paper will attempt to quantify how well efp works, and illustrate the way it works by examining the articles, chapters, and books written on the subject of animals and therapy. psycinfo and medline were searched using the terms, “equine facilitated psychotherapy” and “animal as- sisted psychotherapy.” search limits were not restricted. be- cause few articles were found with this method, a google internet search was done to access more material. due to the paucity of results, papers with adults were included, as it was deemed that general findings may be applicable to work with children and adolescents. search limits were restricted to papers/studies addressing subject matter similar in subject to those found on research databases. results qualitative review theory to get a basic understanding of efp, first some concep- tual models and examples will be discussed. brooks [ ] de- scribed two conceptual models. the first is a triangle of pa- tient, animal, and therapist in which the therapist observes the behavior of the animal and patient. the behavior of the animal is interpreted to the patient. the effects of the pa- tient’s behavior on the animal are reflected to the patient, and the patient is encouraged to reflect on his/her own behavior and affect. the second is the diamond of patient, animal, therapist, and animal handler. the handler has the responsi- bility to observe and state how the other two are affecting the animal. these methods emphasize the fact that horses in par- ticular (of animals) will be affected by discrepancies be- tween stated intent and observed behavior. brooks [ ] described a year-old with swearing and rude behavior. this patient’s violent and desperate behaviors stemming from fear of rejection did not serve to bring people close to him, but rather pushed people away. the author notes that “animals can teach children about energy, bounda- ries, how we move our bodies, and the intensity of purpose we bring to others… because they are very sensitive to our energy and how we move around them. if we move too fast or want to touch [them], they often move away from the in- tensity of the energy we convey… [they] are generally care- ful about maintaining personal space. however, they are also very curious and will usually approach a human who re- mains calm and unaggressive” (p. - ). the case dem- onstrates how youths can learn to respect the boundaries of the animal and still have positive interaction with the animal. brooks also describes a six year-old who was witness to violence and had problems with behavioral acting out. the animal was used to illustrate healthy touch and an analogy was made to winnicott’s holding environment. this is a safe space, both physical and psychological, which is created by the mother unbeknownst to the infant. another study compared a “zoo-group” of children with a control group [ ]. both groups were diagnosed with atten- tion-deficit hyperactivity disorder (adhd) and conduct dis- order. the zoo-group had responsibility for and interaction with a variety of animals for about four hours per week. in three months, the children in the zoo program had a decline of one standard deviation in symptomatology (aggression). during this period the control group had episodes of very aggressive behavior, while the zoo-group had zero. efficacy reportedly lasted for four years or more. work with horses also may be used to break though a client’s defensive barriers and require them to develop fresh insights and perspectives for dealing with their old patterns and problems in a way that conventional office therapy does not [ ]. in efp, clients who are behaving in ways that were inconsistent with feelings or thoughts are required to become behaviorally consistent and cooperatively affective in order to work with the horse. while a therapist in office work might not be aware of the dissonance, the horse may display unsettled behavior until the client was internally consistent. there are a variety of theories as to how and why efp works. these range from the more physical concepts such as relaxation training taught on horseback, to more intangible ideas like self-awareness, to abstract schemas of uncon- scious. roberts [ ], for example, describes the horse as a living, breathing biofeedback machine because it externally reveals internal processes in real time. she discussed how nursing students benefited from efp while learning how the program worked for their child clients. the students had an opportunity to participate in a one day learning experience in horse therapy. according to roberts, “efp is not just pet therapy. horses are unique in their response to humans be- cause they are prey animals, not predators, and their survival demands that they be extremely sensitive to the environ- ment… horses respond to the internal state of the person, no matter how much the person tries to disguise it” (p. ). nursing students were able to take different perspectives on disease and think more creatively about how to help their patients after the program. patients with eating disorders describe another treatment population. christian [ ] detailed work with a patient with anorexia who benefited from equine-assisted therapy. in one session, the patient participated in un-mounted activities us- ing problem solving with two therapists, an equine specialist, and three horses simultaneously. post-session, practical ap- plications to life outside treatment were discussed. in another session, the patient was mounted and had other challenges to solve. therapists reflected behavior and drew analogies to the patient’s life choices. the patient learned to ask for help and be specific in her requests. in addition her attitude im- proved and she became more optimistic about recovery. cumella [ ] described multiple benefits experienced by clients, including improved self-confidence, self-efficacy, communication, trust, perspective, assertiveness, and boundaries. another group that may benefit from efp is clients with problems relating to physical contact or close- ness. for example, bates [ ] noted that “being carried” by a horse may have positive associations for women who have shunned physical closeness by humans. equine facilitated psychotherapy the open complementary medicine journal, , volume vidrine [ ] discusses different ways that therapeutic riding may be beneficial. one way is teaching humans to send congruent messages with spoken and body language. horses communicate almost entirely through body language and are not capable of “double-bind” communication. a horse can be perceived as a very large mirror to promote conscious attention to our specific behaviors. this encour- ages authentic communication and awareness of our secret intentions. an article by colclasure [ ] provides a quote from the director of the remuda ranch equine program, “[horses] are relational animals that have the natural ability to mirror what our body language is saying. as a result, [we are] able to gain insight into [our] own nonverbal communi- cation and behavior patterns” (p. ). another conceptualization, based on the theorized impor- tance of rhythm as one the first experiences of a developing child, uses equine therapy to build up “body-identity” and help with correcting pre-verbal dialogue. because humans can actually ride horses, there is a unique relationship there that is not present with a dog or cat. a literal holding and sustaining dynamic is created when a rider has close skin contact with a big and supporting living being. a noted point is that the ratio between the body weight of a horse and rider is not unlike the body weight ratio between a mother and infant. the horse may interact with the individual in an ap- propriate and physical way that would not be possible for the therapist. the uninhibited nature and unconditional response of the horse also may be of importance. quoting vidrine [ ], “horses are, by and large, naked and unashamed. they get dirty and eat off the ground; they are hairy and at times, sweaty, and breathing hard. they relieve themselves when they need to, their genitals are visible, yet clients can safely physically interact with them on a fairly intimate basis… [and] at a pace they can control… horses are also not judg- mental… and don’t know if you are small for your age, or have crooked teeth” ( , p. ). these qualities may con- tribute to greater connectedness and self-acceptance on the part of the rider. vidrine [ ] also discusses the importance of archetypes as emphasized by carl jung. some old archetypes are the pegasus and the unicorn. some modern archetypes are em- bodied in the stories of the black stallion and misty of chincoteague. some particular aspects of horse archetype are: worker, bolter, helper, victim, vital, destructive, sensi- tive, and panicked. the horse provides a whole new object that may be projected upon with various transferences. chil- dren may imagine horses as magical, powerful, beautiful, brave and strong. these perceptions may contribute to the therapeutic benefits of efp for children. vidrine [ ] de- scribes her work with children and vaulting and describes some of the noted benefits. children were very motivated to attend sessions. efp taught structure, responsibility, routine, care for another (the horse), empathy, safe mistake-making, the value of practice and mastery, discipline, problem- solving, body awareness, visual learning, patience, respect for others choices, creativity, self-esteem, relaxation, the value of completing necessary but unpleasant tasks, self- reflection, and nurturing. in addition, the fact that the efp was done as a group activity widened the children’s “circle of trust” and promoted interpersonal interaction. bates [ ] uses an analogy comparing the id, ego, and superego to the horse, patient, and therapist, respectively. the horse also may be represented as the object of transfer- ence. the rider’s repressed id can be associated to horse’s impulsivity and vitality. the therapist acts as superego, limit- ing the rider and horse to safe behavior. scheidhacker [ ] stated, “the therapist’s job (superego) is to show the patient (ego) how to control the horse (id) without losing the horse’s vitality” (p ). therapeutic benefits are achieved in part through ego strengthening. the husbandry and care of an animal can be instrumental in healing. mccormick and mccormick [ ] wrote a book called horse sense and the human heart in which the hu- man-animal bond, including the myth and metaphor of horses are emphasized. the authors promote the jungian perspective that wild horses represent the instinctual, uncon- trollable parts of the unconscious and that the centaur repre- sented an attempt to integrate these separate parts. the mccormicks [ ] had many different ways to use horses therapeutically; they varied from simple observation, to ani- mal husbandry and care, to grooming and riding. they chose to use the spanish peruvian horse for these interactions be- cause it was known for a “gentle, consistent, trustworthy disposition” (p. ). the mccormicks [ ] see holding and touch as instru- mental in development. horses can provide this in an appro- priate manner to aid in correction of negative experience. they discuss a specific case in which a year-old was helped with a psychotic break. the use of trance in therapy and the horse as a means to help a rider focus into an alpha meditation state are explored. the natural gaits and regular motion of the horse may promote this rhythm and relaxation. the authors differentiate between the words “feeling” and “emotion.” “feel” comes from “felen” (middle english) and concerns sensations and perceptions. “emotion” comes from “emouvoir” (middle french) and describes movement and behavior (expressed feeling). the horse’s sensitivity may help a person coordinate their emotions with their feel- ings. taylor [ ] detailed how horses may be used in family, cognitive behavioral, play and analytic therapy. she related many possible benefits including decreased therapist burn- out and increased client motivation. correspondingly, in a comprehensive paper on the theory and methods of efp, karol [ ] expounded on the potential therapeutic benefits of efp for patients working with professional psychotherapists. she notes that very few efp programs use professionals at a masters or doctorate level. within the context of traditional psychotherapy, the therapist may use traditional equitation instruction as a therapeutic tool. she states that the use of efp can help the therapist explore the world of the client on verbal, non-verbal, and pre-verbal levels. karol [ ] reports, “when an advanced-level clinician works in the efp setting, the therapeutic work can move from a narrow use of cogni- tive-behavioral techniques, here-and-now therapies, and lim- ited stages of personality development to a more complete psychotherapeutic experience and involvement” (p. ). it is noted that while cognitive behavior therapy (cbt) and psychodynamic theory could be widely applied to efp, this multimodal approach to therapy remains very uncommon. she details her work with children in efp, and describes the open complementary medicine journal, , volume lentini and knox how the sessions are developed and what guiding principles are used. she observes that like traditional psychoanalytic work, in efp the therapist and client are often free to talk without focusing on the facial expressions and reactions of the therapist. karol [ ] discusses six aspects of psychodynamic work done in sessions: existential experience (including aspects of biofeedback, here-and-now attention, and immediate com- munications), unique relationship with the horse, therapeutic relationship with the therapist, nonverbal experiences com- municating with the horse, preverbal experiences such as comfort, touch and rhythm, and the use of metaphor. she notes that, “when a child is on top of a horse, sometimes for the first time in [that] child’s life, he or she is looking down onto an adult… and can experience power… and an enhanced sense of his/her own body… [furthermore] the horse is also a vulnerable creature and so serves as an apt companion for a child overwhelmed by his or her own sense of vulnerability and imperfections” (p. ). the relationship with the horse can help develop a child’s self-concept and ethics. transfer- ence can occur in relation to the animal and be used thera- peutically, and countertransference may develop, especially if the client takes out his/her frustrations on the animal. nonverbal experiences communicating with the horse refers to how the client listens for and interprets the nonverbal cues of the horse. this can be expanded into how the client relates to the outside world in human behavior and communication. preverbal experiences relate to the development of object relations. karol [ ] states she sometimes uses music to augment and encourage the development of an internal con- sistent rhythm. metaphor can be developed through the child’s imagination, through problem-solving, or through story-telling. metaphor can help bridge the inner and outer worlds of the client. karol [ ] describes efp as a “theater” in which to explore and catalyze change in the child’s uni- verse. effects on the horse so efp may be helpful to humans, but what effect does it have on the horse? kaiser [ ] published a studies concern- ing the well-being of the horse in which the question “does therapy using horses cause the horse too much stress?” was addressed. stress indicators were behaviors such as ears- pinned, head tossed, etc. the results suggested that equine therapy with at-risk children might stress horses more than simple lessons with recreational riders. this might be due to behaviors that at-risk children sometimes exhibit (e.g., sud- den movements, not following safety directions, making loud noises). moors [ ] did a biography of a horse used for therapy sessions. he was a year-old palomino quarter horse geld- ing named “yeller.” yeller’s disposition was described by a mother of a patient as quiet and calming. he was used as a therapy and lesson horse at the rancho vista equine center in fort collins, colorado. previously a -h horse, he was described as having a tranquil, steady gait. his owners stated that his toughest challenge was to adjust to many different riders with varying skill levels. treatment populations therapists use efp as treatment for many different pa- tient populations. bates [ ] reviewed three studies that showed that once per week riding contact with horses de- creased the number of acts of aggression in young people who were “seriously emotionally disturbed.” this author concluded that equine facilitated psychotherapy is recom- mended for use with patients with anorexia, substance abuse, schizophrenia, borderline personality and abusive behavior. efp was also considered for use in a therapy program for mothers and children to teach parenting and relating. tyler [ ] found equine therapy was effective in treating patients who were fearful, anxious, depressed, angry, or dis- sociative. however, tyler [ ] asserts that because the ther- apy is expensive and time consuming it should be limited to clients who are not reached by conventional methods. an example was provided of a post-traumatic eight-year old boy with conversion disorder affecting speech. he started speak- ing after his third therapeutic riding session. treatment with horses was also valuable with “counselor-wise” adolescents with a diagnosis of oppositional defiant disorder. besides the diagnoses mentioned above, “special needs” is another area where efp has been used. a few articles have been published in the online magazine of arizona state uni- versity (asu) on equine therapy by mccann [ ]. she re- ports on some studies by crews who is the director of asu’s alternative intervention research clinic. for six years crews studied the effect of sports on children with special needs such as adhd, emotional disorders, low-income and other at-risk groups. she compared golf, swimming, basket- ball, horseback riding and many others. she stated, “the most consistently positive intervention [with these groups] was the horse therapy” (p. ). as mentioned previously, people with eating disorders are another treatment population that may benefit from efp. marx [ ] discussed the use of horses in therapy at remuda ranch, a center for the treatment of eating disorders. it ap- peared due to case reports that this was effective, but he called for empirical studies to evaluate the effectiveness of this method. vidrine [ ] summarizes three studies using therapy with horses. one study with children with special education needs showed increased positive behavior among the study partici- pants. another demonstrated increased social acceptance and self-worth with children with behavioral problems, and a third evidenced improved self-concept among asocial ado- lescent males. vidrine [ ] suggests that therapy with horses may be particularly effective in treatment of refractory and guarded patients. treatment is not limited to mood and childhood disor- ders. scheidhacker [ ] found that using horseback riding with patients with severe mental illness facilitated treatment gains. specifically, he used this method in his german clinic with people diagnosed with schizophrenia, resulting in posi- tive outcomes. work with male gang youths is described in detail by mccormick and mccormick [ ]. they describe their work with severely emotionally disturbed teenagers and peruvian paso horses in calistoga, california. the boys gained knowledge about discipline and education by watching the family unit of a stallion, mare and foal, and then by learning themselves the care and routines of horses. the authors men- tion that no client was forced to do anything; all were equine facilitated psychotherapy the open complementary medicine journal, , volume table . summary of quantitative sources reference type n intervention outcome bizub et al. ( ) study adults with psychiatric disabilities therapeutic riding improvements in self-efficacy and self-esteem bowers, macdonald ( ) study at-risk adolescents equine facilitated psychotherapy sessions of . hours each decreased feelings of depression per self-report bradberry ( ) presentation women with history of abuse “participation in equine facilitated psychotherapy” taped interviews showing efp as an “effective intervention” ewing ( ) article children aged - with learning and behavioral disorders -hour efp sessions no statistically significant results; qualitative positive reports frame ( ) paper licensed therapists “experienced in eap/efp” perceived that depressed adolescent clients improved self-esteem and self- efficacy and decreased isolation glazer ( ) literature review bereaved children aged - week hippotherapy program increased self-confidence, trust, self-esteem hayden ( ) paper at-risk youth “participation in equine facilitated psychotherapy” presence of protective processes of resilience hemenway ( ) study non-clinical adolescent “horseback riding” improved mood, reduced depressive feelings; positive and negative effects on self-esteem kaiser, smith ( ) abstract at-risk children ( ), special education children ( ) sessions of therapeutic riding significant decrease in anger in special education boys klontz et al. ( ) study adults in a residential program hours of equine-assisted experiential therapy (eaet) reduction in regret, guilt, resentment, fears for future. enhancement in self-support and independence. lehrman ( ) literature review case study of year old with multiple impairments, some physical weeks hippotherapy increase in verbal communication and attention span macdonald (download ) paper, review of several programs at-risk - year olds equine facilitated therapy (eft) sessions significantly higher scores on self-esteem and locus of control measures macdonald (download ) paper, review of several programs juvenile offenders and at-risk children aged - years eft sessions of hours each significantly lower scores on aggression macdonald (download ) paper, review of several programs at-risk - year-olds eft sessions of hours each no statistically significant results macdonald (download ) paper, review of several programs at-risk - year olds eft session of ~ hours each statistically significant increase in aggres- sion (“termination issues”) macdonald (download ) paper, review of several programs at-risk - year olds eft sessions of . hours each no statistically significant results mackinnon ( , ) literature review studies reviewed various times of therapeutic horseback riding increase in attention span, self-confidence, self-esteem schultz ( ) study children with experiences of intra-family violence average of eap sessions improvements in gaf scores (average point improvement) shambo ( ) paper women with ptsd eap sessions self report on outcome questionnaire: significant improvement in depression, dissociation, and life functioning splinter-watkins ( ) literature review references reviewed therapeutic riding improvements in sensorimotor, psychosocial, and cognitive areas the open complementary medicine journal, , volume lentini and knox allowed to proceed at their own pace. they note the case of one gang boy who stated he initially did not like horses but eventually went through their program and left the gang to become a productive member of society, eventually joining peace corps. they recommend use of these methods when traditional psychotherapy fails. quantitative review having described theory and practice, it is now time to turn to efficacy. the quantitative data (table ), presents findings from studies representing data from at least participants. their problems include abuse, behavioral disor- ders, being “at-risk” or juvenile offenders, “various mental health problems,” post-traumatic stress disorder (ptsd), “in a residential facility,” “psychiatric disability,” and bereave- ment. interventions varied from hippotherapy, to therapeutic riding, to efp (equine facilitated psychotherapy), to eft (equine-facilitated therapy), to eaet (equine-assisted expe- riential therapy). outcomes measured also varied. they in- cluded “effective intervention”; qualitative positive results; decreased anger, aggression, depression, and dissociation; increased self-esteem, locus of control, global assessment of functioning, “life-functioning,” self-confidence, self-esteem, attention-span, verbal communication, and “cognitive areas.” one study mentioned some negative effects on the self- esteem of non-clinical adolescent girls. a particularly impor- tant noted negative outcome was increased aggression in another study. it was discussed whether attachment to and then loss of the animal could have been a factor leading to this negative finding. positive outcomes in the above studies included decreases in anger, depression, dissociation, and aggression and increases in self-esteem, self-confidence, attention-span, and social interaction. discussion considering all the varieties of method, style, technique and treatment groups described above, how is a therapist to make a choice about efp in treatment with children and youths? overall, the idea of this unconventional therapy is very appealing, especially for difficult to reach groups of patients. mentioned several times were “therapy-wise” pa- tients, hardened youths, and gangs. furthermore, abused, eating-disordered, or neglected children who do not respond to the typical office therapy might also benefit. also compel- ling was the theory of a holding environment and the related detail concerning similar ratios of horse/human versus mother/infant sizes. while the described literature is quite fascinating, and possibly convincing on an individual basis, to get a conclu- sive evidence base on the efficacy of efp for a particular population, a large multi-center study is needed. it should be standardized, controlled, and longitudinal. additionally, the terminology, methods, and theories in this field are rather varied. standardization of the language used to communicate between them would be recommended. the treatment popu- lation studied within a given study should be homogeneous and clearly described. well-established, reliable and valid measures should be used to measure outcomes. as taylor [ ] noted, like any developing field, efp has at this time much more literature on practice than on research and theory and currently therapists fall into two groups: those who are willing to try out an “experimental” therapy and those who are waiting for more studies to come out. longitudinal studies using biofeedback to measure physiol- ogic heart rate variability, skin conductance level, and even beta vs. alpha brain wave activity, and blood samples meas- uring neurotransmitter uptake could significantly enhance research efforts. biofeedback was referred to in several articles. a noted point was how the natural gaits of a horse might promote relaxation and the alpha meditation state. it would be an es- pecially remarkable study to pair already available software programs (wild divine) [ ] that measure physiological biofeedback with equine facilitated psychotherapy. physio- logical parameters tracked by these programs, such as previ- ously mentioned skin conductance and heart rate variability, could be used as outcome variables in such research. cautionary tales warned that specific goals should be delineated when embarking on this atypical therapy and the patient should have a clear idea that despite the use of an animal, efp is not a recreational activity. the therapist should also be unambiguous in establishing boundaries with the patient since the treatment is done in a non-conventional setting and therefore limits could possibly be confused or blurred. regarding obtaining sound and conclusive evidence for the quality and efficacy of efp, the following design is rec- ommended: ) multi-center, ) standardized types of efp compared in different treatment arms, vaulting vs. animal care vs. riding vs. non-riding, ) longitudinal (pre-treatment, and at least years post-treatment), ) controlled (using a treatment-as-usual control group), ) outcomes of four types: cognitive, emotional, behavioral, and objective physiological variables. references [ ] gamache j. equine-assisted therapy’s affect on social skills and attention among school age children. paper for university of puget sound, tacoma, wa . [ ] engel bt. the horse as a modality for occupational therapy. occup ther health care ; : - . [ ] brooks sm. animal-assisted psychotherapy and equine-facilita- ted psychotherapy. working with traumatized youth in child welfare. guilford publications: new york . [ ] fine ah. handbook on animal assisted therapy: theoretical foundations and guidelines for practice. academic press publica- tions: london . [ ] lacoff sl, boris m. levinson: a historical perspective. a focus on his work involving animal-assisted psychotherapy. dissertation abstracts international: section b. sci eng ; ( -b): . [ ] nilson r. equine-facilitated psychotherapy. perspect psychiat care ; ( ): . [ ] gasalberti d. alternative therapies for children and youth with special health care needs. j pediatr health care ; ( ): - . [ ] esbjorn rj. when horses heal: a qualitative inquiry into equine facilitated psychotherapy. dissertation for institute of transper- sonal psychology: palo alto, ca . [ ] taylor sm. equine facilitated psychotherapy: an emerging field. masters paper for saint michael’s college, colchester: vermont . [ ] voelker r. puppy love can be therapeutic, too. jama ; ( ): - . [ ] tyler jj. equine psychotherapy: worth more than just a horse laugh. women ther ; ( / ): - . [ ] roberts f, bradberry j, williams c. equine-faciliataed psychother- apy benefits students and children. holist nurs pract ; ( ): - . equine facilitated psychotherapy the open complementary medicine journal, , volume [ ] christian je. all creatures great and small: utilizing equine-assisted therapy to treat eating disorders. j psychol christ ; ( ): - . [ ] cumella ej, simpson s. efficacy of equine therapy: mounting evidence. ; www.remudaranch.com [ ] bates, a. of patients & horses: equine-facilitated psychotherapy. j psychosoc nurs ment health serv ; ( ): - . [ ] vidrine m, owen-smith p, faulkner p. equine-facilitated group psychotherapy: applications for therapeutic vaulting. issues in ment health nurs ; : - . [ ] colclasure d. to greener pastures. american fitness jul/aug . [ ] scheidhacker m. the dynamic of a special three-way relationship: patient-horse-therapist in psychotherapeutic riding. proceedings of the ninth international therapeutic riding congress: riding the winds of change ( - ). denver: north american riding for the handicapped association . [ ] mccormick ar, mccormick md. horse sense and the human heart. health communications, inc: deerfield beach, fl . [ ] karol j. applying a traditional individual psychotherapy model to equine-facilitated psychotherapy (efp): theory and method. clin child psychol psychiatry ; ( ): - . [ ] kaiser l, smith ka, heleski cr, spence lj. effects of a therapeu- tic riding program on at-risk and special education children. j am vet med assoc ; ( ): - . [ ] moors d, ed. horse hero: biography of a horse who helps chil- dren and adults as a therapy horse. horse and rider: golden, co . [ ] mccann j. equine equilibrium. asu research, spring: new york . [ ] marx rd, cumella ej. is equine therapy useful in the treatment of eating disorders? eat disord ; : - . [ ] wild divine ( ) www.wilddivine.com received: december , revised: march , accepted: march , © lentini and knox; licensee bentham open. this is an open access article licensed under the terms of the creative commons attribution non-commercial license (http://creativecommons.org/licenses/ by-nc/ . /) which permits unrestricted, non-commercial use, distribution and reproduction in any medium, provided the work is properly cited. title page title costing resource use of the namaste care intervention uk: a novel framework for costing dementia care interventions in care homes. authors jennifer bray, association for dementia studies, university of worcester, united kingdom. professor dawn brooker (corresponding author), association for dementia studies, university of worcester, united kingdom. d.brooker@worc.ac.uk, telephone: , fax: , university of worcester, henwick grove, worcester, wr aj. isabelle latham, association for dementia studies, university of worcester, united kingdom. faith wray, association for dementia studies, university of worcester, united kingdom. professor darrin baines, bournemouth university, united kingdom mailto:d.brooker@worc.ac.uk abstract objectives: to develop a representative full cost model for a uk version of the multi- component, non-pharmacological namaste care intervention for care home residents with advanced dementia. design: the namaste care intervention uk comprises multiple individual cost components, and a comprehensive list of all possible resources that could be expended in each cost component formed the initial stage of the cost model development. resource use was divided into three key areas: staff, capital and consumables. representative costs were identified for each of the possible resources, with a standard approach being used for all resources within each of the three key areas. assumptions were made regarding the number and duration of sessions, group size, involvement of different staff members, and additional activity before and after a session, as these all have an impact on resource use and hence cost. a comparable ‘usual care’ session for residents not receiving namaste care was also costed to enable the ‘additional’ cost of delivering namaste care to be calculated. results: the full cost model indicates that namaste care intervention uk costs approximately £ -£ more per resident per -hour session than a comparable period of usual care. however, positive impacts on resident and staff well-being resulting from receiving namaste care will also have their own associated costs/benefits which may negate the ‘additional’ cost of the intervention. conclusions: the cost model provides the first opportunity to investigate the full costs associated with namaste care, and will be refined as additional information is captured during subsequent phases of the research. introduction an estimated . million people are living with dementia, with a global economic cost currently exceeding us $ billion (prince et al., ). the social care cost of dementia in the uk has been calculated as £ . billion which is borne by local authorities, people living with dementia, and their families (alzheimer’s society, ). approximately a third of people living with dementia in the uk live in care homes (alzheimer’s society, ). advanced dementia and frailty are common conditions that care homes need to manage on a day-to-day basis (hancock et al., ). developing evidence-based person-centred interventions to improve quality of life and care for residents is a primary concern for many working in the field (brooker & latham, ). however, the cost of implementing such interventions can be a barrier. some new interventions require specialist equipment or practitioners, making them expensive to implement; sometimes resource use is less obvious. costing non-pharmacological interventions is far more complex than costing a new drug treatment. for instance, is a music session more or less expensive to run than a reminiscence session? moreover, with potential differences in costs and benefits, which would be better value for money? such questions illustrate the importance of understanding the cost implications of providing interventions if limited resources are to be used wisely. the primary aim of this paper is to cost a uk version of the namaste care intervention by developing a representative full cost model including both fixed and variable costs. the underlying methodology described within this paper could be widely adopted for other complex (non-pharmacological) interventions. such costings could support decision-making within a range of care settings. namaste care is an innovative, multi-component intervention developed in the us as a way of caring for people with advanced dementia, taking its name from the hindu term meaning ‘to honour the spirit within’ (simard, ). it aims to support quality of life through sensory stimulation, shared activity, social interaction and comfort, including formal pain assessment and increasing care staff awareness and responsiveness to distress. a namaste care session can include physical and sensory activities aimed at stimulating the senses and developing emotional connection. activities include hand massage, soft music, the use of different aromas, soft blankets, and food and drink. sessions are recommended to take place in a dedicated room where the whole ambience can be controlled to provide a calm, relaxing space for residents. namaste care is intended to be integrated into everyday care with two-hour sessions run every morning and afternoon. training care home staff as namaste care workers aims to strengthen relationships between staff, residents and families. the costs of namaste care have not been calculated previously. the authors are investigators on a three-year implementation research project developing a ‘standard’ namaste care intervention uk (nci-uk) and exploring barriers and facilitators to implementation. namaste care has been described as “cost neutral” as it does not require additional staff, space or expensive equipment (thompsell, ). many resources required for namaste care (such as pillows, music and toiletries) can be found within a care home and some homes may receive donated items. however, using existing resources means that the true cost of namaste care is hidden, making efficient allocation of resources difficult to establish. the nci-uk cost model assumes that everything required for a session is included in any resource use calculations, including resources that already exist within a care home. this paper presents a model designed to provide a robust framework for costing all resources used in namaste care sessions. the model may be populated with hypothetical (estimates of costs when resource use is not directly measurable) and real data (based upon research interventions and cost questionnaires), and can be updated as assumptions change or new data collected. as the research project progresses, estimates will be updated using data gathered from care homes about actual delivery costs incurred. costs generated by the model will also be used in conjunction with other aspects of the research project investigating the impact of nci-uk on resident and staff outcomes such as medication, hospital admissions and resident behaviour. these could all have a financial implication, making it possible to explore the potential cost benefit of delivering nci-uk sessions. overview of the namaste care intervention uk the nci-uk is a standardised, evidence-based refinement of the original namaste care intervention incorporating a review of research evidence and current uk practice relating to the elements of namaste care outlined by simard ( ). the evidence review was undertaken during the initial phases of the research project and is reported separately. the emerging nci-uk was refined through engagement with namaste care practitioners and reviewed by the project’s steering group which included joyce simard (the originator of namaste care), a namaste care trainer, care home providers and people directly affected by dementia. table outlines the components of the nci-uk. the first grouping relates to preparation and management of ‘the namaste care space’. the second grouping includes ‘basic activities’ that are core components of a nci-uk session. as sessions can be adapted for each group of residents, not all components will be part of every session. some components may require involvement from members of the wider staff team. for example, snacks and drinks may be prepared by catering staff, or towels by housekeeping. the third grouping of ‘individualised activities’ consists of components specific to individual residents. each resident is assessed to see which components are appropriate to their needs. some care homes already have access to pet animals, robotic animals or snoezelen equipment. these can be incorporated into a nci-uk session, but are not essential and so are not included in the cost model presented here. -------insert table here------ methods the conceptual cost model the approach to costing a nci-uk session is based upon the standard approach used in health economics studies. this treats resources (such as staff time) as physical units that are expended when providing the intervention (glick et al., ). these physical units are costed using ‘price weights’ reflecting the level of expenditure required to purchase them in a care home. as nci-uk sessions are provided within a care home, residents will usually receive the intervention for free at the point of delivery. however, nci-uk sessions involve care home resources. the purpose of the cost model is, therefore, to directly measure all economically relevant and significant resources that may be expended in providing the nci- uk. accurate and timely information on the full costs of nci-uk is important for decision- makers within care homes because it will estimate: • whether adoption of the intervention is affordable; • how resources are allocated and adjusted between care-providing activities; • how resource use is likely to change if nci-uk provision is modified. the model estimates the cost of using the full range of physical inputs required to provide nci-uk as presented in table . to do so, a costing methodology was adopted that allows relevant price weights to be assigned to all resources. the resulting costs may be estimated in terms of staff, capital and consumable costs, and summed to generate total costs per resident and per session, based upon the nci-uk session provided. although the focus of this article is the development of a full cost model, the marginal cost of providing a nci-uk session is also investigated by comparing it with the cost of providing a period of ‘usual care’. this is the care that residents would normally be receiving in a care home if they were not participating in a nci-uk session. developing the cost model to cost any non-pharmacological intervention, the first task is to articulate the resources expended during its delivery. as the nci-uk compromises multiple components, the cost model includes a variety of resource types. construction of the model began by compiling a comprehensive list of all possible resources that could be expended. this was verified by reviewing existing namaste care literature for associated activities and resources, including resources not linked directly to specific components. adopting the standard approach to economic costing (drummond et al., ), resource use was divided into three key areas: staff, capital, and consumables. when calculating costs, national estimates were sought for the price of each resource. staff costs – while it is acknowledged that the overall cost of an intervention encompasses the costs associated with the implementation process itself (saldana et al., ; hoomans & severens, ), the indirect costs of planning and training were not included in the cost model. the focus of the cost model reported in this paper is staff involvement during the delivery phase of nci-uk. for the purpose of the full cost model it was necessary to calculate the cost of the staff time associated with a nci-uk session. this does not necessarily mean that additional staff time is required to deliver nci-uk sessions, but that sessions require a certain amount of staff time. when calculating staff costs per session, only direct costs were included encompassing pre-session preparation, post-session clear-up activities, and staff delivering the intervention to residents. pre- and post-session activities could relate to specific components such as preparing snacks and drinks, or could be the act of accompanying residents to and from a session and helping them to settle in to their surroundings. as part of the ethos of namaste care is that it encompasses all staff rather than being the remit of one or two individuals, these activities could potentially involve any member of staff from the administrative and maintenance staff through to the management team. initial internet research was unable to identify previous estimates of staff costs for the job roles relevant to nci-uk. consequently, average salary information was obtained from a recruitment website (www.indeed.co.uk). additionally, job advertisements were examined to obtain information about holiday allocations and the number of hours expected to be worked per week, which is important when calculating the cost of face-to-face sessions. to obtain the actual cost of employing staff in each role, salary on-costs were calculated using the approach suggested by the personal social services research unit (pssru, ). salary on-costs include employment related costs for the employer such as benefits and taxes. it takes an employee’s national insurance allowance, employer’s national insurance contribution rates, and employer’s contribution to superannuation into account. the use of this method is standard practice in economic costing studies. ( ) ((annual salary - employee’s national insurance allowance) x employer’s national insurance contribution rate) + (annual salary x employer’s superannuation contribution) the final salary figures were adjusted for holiday allocation and hours worked per week to generate an hourly rate of pay for each staff type and grade. ( ) (annual salary + on-costs) / ( weeks – (holiday allowance / )) hours worked per week capital costs – this included understanding costs associated with the area of the care home set aside for namaste activity. as with staff costs, pre- and post- session activities such as setting up or clearing the namaste care space have associated capital costs and so were included in the model. internet searches identified a range of prices for room hire in care homes or related care settings such as hospices or day centres. in keeping with the costing approach, these were converted into hourly costs using an assumption of an -hour day. to make the costings representative, a mid-range cost was selected. comparing multiple prices from different sources gives reassurance and confidence in the selected cost, as it was chosen with knowledge of the wider context. consumable costs – delivering namaste care involves many different items which all have associated costs. due to the range of resources expended in nci-uk, a standard approach was used to create a complete set of consumable costs for all resources. to ensure cost estimates were representative, a sample of eight care home staff was asked where they buy resources. this was supplemented by an internet search to identify care home suppliers who could provide national prices. the identified websites were searched systematically to find a minimum of six to eight prices for each item. for some items, different options were explored depending on the level of provision (‘minimum’, ‘regular’ or ‘enhanced’) as illustrated in the following examples: • soap – the minimum acceptable level of provision would be a generic bar of toilet soap, with soap from a known brand likely be more expensive (regular). to promote reminiscence a namaste care worker may purchase a recognisable scented bar (enhanced). • chair for residents – as a minimum, residents with dementia need a comfortable chair with arms and no wings. however, an adjustable chair would be preferable, particularly a motorised rise and recliner, which helps mobility and support (regular). at the highest level of provision more expensive, posture-specific chairs may be used (enhanced). depending on the item, it does not always follow that cost will increase with the level of provision. a further complication is that some consumables are sold in packs of different sizes making it difficult to directly compare prices. to address this, prices were converted into a common rate such as the price per bar of soap. as with capital prices, these comparable prices were used to select a mid-range option as a reasonable estimate, rather than looking at a single price in isolation with no context. cost model assumptions consumable resources the cost model was designed on the assumption that a block of nci-uk sessions would be delivered for three months ( days). sessions should be delivered twice a day, seven days a week, equating to separate sessions across the three months. these figures were used as the basis of the cost calculations. long-lasting consumables (such as a blanket or chair) can be used during multiple nci-uk sessions whereas disposable ones (such as food and drink) need to be replaced every session. for the cost model, it was assumed that all items were bought new at the start of any three-month period and replaced as necessary during that time. therefore, cost estimates for long-lasting consumables are based on their use over the initial sessions. although this may not be a reasonable assumption for some items (such as a chair), the approach allows decision-makers to isolate each session as a separate cost event, making analysis easier to perform. if more complex analysis is required, the -month assumption may be relaxed. for some consumables (such as a music player) only one item is required per nci-uk session. for others (such as pillows) one item is required per resident. in the latter case, it was assumed that each resident had their own item, but all residents had the same type. additionally, some consumable items may be used for more than one component. for example a wash bag for toiletries could be part of hand and face washing, feet washing, hand massage, foot massage, individual scents and hair brushing. if a nci-uk session delivers more than one of these components, duplicate items would not be required. additional assumptions other assumptions about nci-uk sessions are: • there are eight residents in a session; • one member of staff delivers each session; • one family member is present during a session; • a session takes place in a dedicated namaste care room; • a session lasts two hours; • pre-session preparation takes minutes for staff involved in setting up the namaste space or specific components, and minutes for any staff helping to bring residents to a session – this may include senior staff and managers; • post-session clear-up takes minutes for the namaste care worker and minutes for all other staff. these assumptions enable a representative cost to be calculated, especially on a per- resident, per-session basis. all assumptions can be adjusted within the cost model to explore different options or reflect data relating to the actual delivery of nci-uk which will be captured during later phases of the research project. results the cost model enabled the session costs for each aspect of nci-uk to be calculated, taking the three levels of provision into account. based on the assumptions outlined previously, table shows the staff, capital and consumable costs for a session, granulated by job role, part of session, and component respectively. the consumable costs are based on the unlikely scenario of all components being delivered during the same nci-uk session, and do not account for duplication of resources. these costs should therefore be viewed as the maximum costs for nci-uk. -------insert table here------ session costs for a namaste care intervention uk session and a ‘usual care’ session namaste care is designed to be delivered where residents would usually be receiving care – in this case, a care home. if residents were not in a nci-uk session they would still be receiving everyday ‘usual care’ within the home. some components from a nci-uk session could also be provided as part of usual care. in calculating the cost of nci-uk it is therefore important to also calculate the cost of usual care. as part of the wider research project, observations of usual care were conducted in six participating care homes. these observations involved assessing levels of engagement of residents over a two-hour period, part of which included recording the types of activity or intervention available to residents. this enabled common components to be identified as being offered in different examples of usual care, such as background music, drinks, and having items to touch and hold. based on these observations, table shows which components may be provided as part of usual care during a comparable time period for a comparable size group of residents. it is acknowledged that outside of a nci-uk session other types of usual care may take place involving additional resources and therefore be more expensive, for example an art session or pet therapy. for the purpose of this paper, these forms of usual care would be viewed more as an alternative activity rather than ‘background’ everyday usual care. while each different type of activity could potentially be costed, the example usual care session chosen for this paper is intended to represent the type of care provided in any care home without any specific activities being provided. assumptions for usual care included: • there are eight residents supported by one member of staff; • care takes place in a lounge area or similar; • the usual care period lasts two hours, but space is required for longer before and after the period to ensure all residents are present for the full two hours; • fewer staff, and a different mix of staff, are required to help bring residents to and from usual care or prepare and clear up specific components. using the cost model, full staff, capital and consumable costs were calculated for both a nci-uk session and a comparable usual care period, with table indicating which components were applicable in each. the overall consumable cost for a session is not a straightforward sum of the individual component costs shown in table . instead, it reflects only the relevant components for the session and accounts for duplication of consumables across components. table indicates that the example nci-uk session costs approximately £ -£ more per resident than a comparable period of usual care. part of the cost difference stems from the different staff mix required. while nci-uk sessions require more staff time overall, it is likely that in practice staff would be reassigned rather than additional staff needing to be employed, especially because of the relatively small amounts of time involved for staff not actually delivering the sessions. although beyond the scope of this paper, additional staff time for nci-uk may be counterbalanced by savings in staff time elsewhere as a consequence of the sessions. for example, if nci-uk sessions have an impact on resident behaviour, wellbeing and skin condition, there may be a reduction in staff time related to addressing these issues outside of the sessions. additionally, staff turnover and sickness could be affected, which would also have an impact on staff availability. the wider project will explore some of these aspects of the nci-uk sessions. -------insert table here------ discussion developing this innovative cost model has required substantial work to identify and cost the components involved in delivering nci-uk. this has resulted in a model that illuminates the specifics of nci-uk, but one that can also be applied to other non-pharmacological interventions in similar care settings. with regard to the research project’s next steps, the cost model is in a flexible and easy-to- use format (an excel spreadsheet), meaning that as data from project becomes available it will be possible to adjust dynamically from ‘intended’ application to real-life implementation. this will enable us to identify how these changes affect costings. for example, if the duration of a nci-uk session or the number of residents differed in practice, the cost model would automatically calculate the new session costs. similarly, any changes to individual resource costs would be propagated through the model. consequently, the cost model is flexible enough to calculate costs for sessions that have already been delivered and those still in the planning stages, which could enable care homes to compare different sessions using their own individual parameters. such functionality has hitherto been unavailable, making the cost model an innovative tool with regards to the delivery and implementation of nci-uk beyond the end of the project. by using the cost model to compare nci-uk with a comparable period of usual care we have illuminated the real cost of the intervention to care homes. this full cost is often hidden at the point of delivery, and thus prone to over or under-estimation by service providers, commissioners and policy-makers. providing such costings will aid decision-making and better elucidate the work that staff and services do in the minutiae of day-to-day practice, something which can be obscured by descriptions such as ‘person-centred care’, ‘psycho- social care’ or ‘non-pharmacological intervention’. costings indicated that, per resident, delivering the example nci-uk session is £ -£ more expensive than providing usual care for the same duration. it is possible that this additional cost could be an important factor for care home managers when deciding whether or not to implement nci-uk sessions within their care home. however, the additional cost must be seen in the context of the risks associated with not delivering the intervention, as any detrimental effects to resident and staff well-being will have their own associated costs. this is particularly so for nci-uk as it is an intervention for people with high needs, focussed around creating a safe, inviting space for the individual. for example, an increase in falls, hospital admissions, behaviour that harms a person or others, and a need for increased supervision are all potential implications of favouring usual care over namaste care, and may well result in costs that exceed the additional cost of providing nci-uk. it should also be appreciated that while the nci-uk and usual care sessions used in this paper are based on experience and observation, they are still examples and may not be an accurate reflection of actual care delivery in some care homes. by using and refining the model based on practical implementation of nci-uk in later phases of the project and considering the costs associated with resident and staff outcomes as a consequence of the nci-uk sessions, it will be possible to more accurately explore the overall costs and benefits of nci-uk. the above features have important implications for future evaluations of non- pharmacological interventions in care homes and similar settings. the cost model can be easily adapted for different interventions, comparisons with a variety of ‘usual care’ scenarios, and comparison between interventions. until now, such functionality has not been available, meaning that evaluations have used static cost estimates, limited costing parameters or been unable to sufficiently explain to decision-makers the financial aspects of intervention impact. moreover, by enabling comparisons between intervention costs and the hidden costs of not providing an intervention, understanding is improved regarding what a particular intervention brings. finally, the nci-uk cost model provides decision-makers with useful estimates of delivery costs, which could be used to justify whether or not nci-uk sessions should be introduced in different situations in terms of their financial viability. however, it is acknowledged that the initial version of the model has limitations. due to the lack of detail available via the recruitment website, some estimates of staff costs may include people with the same job title in different work settings. these staff costs may not, therefore, provide an accurate reflection of costs for people working in a care home. however, actual salary costs within specific locations can be substituted. in terms of consumables it is recognised that the cost model is theoretical, and in practice staff may be restricted to specific suppliers, or conversely may be able to shop around for better prices. it is also highly likely that care homes will use existing resources or receive donations rather than buying new items. care homes are also unlikely to dispose of or replace many durable items at the end of a -month period. these factors suggest the potential for financial savings above that assumed by the cost model. subsequent phases of the research project will collect information from participating care homes regarding their actual implementation of the nci-uk, helping to refine the cost model and the assumptions made within it. this will result in a more accurate, evidence-based cost model reflecting the practical implementation of the nci-uk, and one which should be usable by decision-makers in the field. conclusions nci-uk, and indeed namaste care more generally, has not previously been costed, and thus some care homes may be dissuaded from implementation by the perceived expense of the resources required. therefore, although there is room for improvement and refinement, the initial resource cost model provides the first opportunity to investigate the full costs associated with namaste care in a structured way. additionally, while the cost model has been developed specifically for costing nci-uk sessions, the underlying principles and methodology could be adopted and adapted to explore the costs of delivering other complex (non-pharmacological) interventions in care homes and more widely. acknowledgements thanks to the care home staff who helped to provide information about the costs of consumables and resources. references alzheimer's disease international ( ) world alzheimer report: the global impact of dementia. london: alzheimer's disease international. alzheimer’s society ( ). dementia infographic. [online] available at: https://www.alzheimers.org.uk/about-us/policy-and-influencing/dementia-uk-report; last accessed july . alzheimer’s society ( ). fix dementia care: nhs and care homes. [online] available at: https://www.alzheimers.org.uk/download/downloads/id/ /fix_dementia_care_nhs_and_ca re_homes_report.pdf; last accessed july . brooker, d. and latham, i. ( ). person-centred dementia care, nd ed. london: jessica kingsley. drummond, m., sculpher, m., claxton, k., stoddart, g. and torrance, g. ( ). methods for the economic evaluation of health care programmes, th ed. oxford: oxford university press. glick, h., doshi, j., sonnad, s. and polsky, d. ( ) economic evaluation in clinical trials, nd ed. oxford: oxford university press. hancock, g. a., woods, b., challis, d. and orrell, m. ( ). the needs of older people with dementia in residential care. international journal of geriatric psychiatry, , - . doi: . /gps. . https://www.alzheimers.org.uk/download/downloads/id/ /fix_dementia_care_nhs_and_care_homes_report.pdf https://www.alzheimers.org.uk/download/downloads/id/ /fix_dementia_care_nhs_and_care_homes_report.pdf hoomans, t. and severens, j. ( ). economic evaluation of implementation strategies in health care. implementation science, , . personal social services research unit ( ). unit costs of health & social care. prince, m., wimo, a., guerchet, m., ali, g. c., wu, y. t., and prina, m. ( ) world alzheimer report: the global impact of dementia: an analysis of prevalence,incidence, cost and trends. london: alzheimer’s disease international. saldana, l., chamberlain, p., bradford, w.d., campbell, m. and landsverk, j. ( ). the cost of implementing new strategies (coins): a method for mapping implementation resources using the stages of implementation completion. children and youth services review, , - . simard, j. ( ). namaste care: the end of life program for people with dementia, nd ed. baltimore: health professions press. thompsell, a. ( ). namaste care – how to deliver quality dementia care with no more staff. available from http://www.rcpsych.ac.uk/pdf/thompsell% amanda.pdf; last accessed july . http://www.rcpsych.ac.uk/pdf/thompsell% amanda.pdf table : an overview of the components of the namaste care intervention uk component detail th e n am as te c ar e s pa ce a beginning and an end participants are welcomed individually into a relaxing and calm space at the start of a session. towards the end of a session participants are activated through changes in the music, aroma and lighting. the overall ambience the space is prepared in advance and attention paid to creating a calm, warm, welcoming and safe atmosphere. natural light and the ability to alter light levels strong light levels are avoided, and it should be possible to adjust light levels. additional atmospheric lighting may be used. specific and calming aroma natural aromas are used rather than artificial ones. background sounds or music gentle and relaxing sounds or music are used to create an atmosphere rather than providing entertainment. background visual stimuli on a screen gentle and relaxing images are used to create an atmosphere rather than providing entertainment. b as ic a ct iv iti es physical comfort comfortable seating is provided. pain assessments are undertaken with individual participants prior to sessions. levels of comfort are monitored throughout. expressive touch closeness is communicated using touch, through activities such as hand massage, foot massage, hand and face washing, foot washing, and hair brushing. food treats opportunities are created so participants can experience favourite tastes, sensations and textures. drink/hydration opportunities are created so participants can experience favourite drinks and ice lollies. tactile stimulation opportunities to experience different touch sensations are offered, including soft blankets and fabrics. nature opportunities are created so participants can engage with and experience nature such as plants. in di vi du al is ed a ct iv iti es involvement of the family families and visitors are actively welcomed to join the namaste care intervention uk sessions. personalised music playlists that are significant to individual participants are incorporated into sessions where appropriate. significant items connection and interaction is enhanced by using objects which are significant to individual participants. use of dolls if participants enjoy interacting with or holding dolls then this is incorporated. use of animals if participants enjoy interacting with or holding animals (live or toys) then this is incorporated. if in-house or visiting animals are available, these can be included in namaste care intervention uk sessions. robotic simulations can be used if already available. snoezelen/multi- sensory equipment if sensory equipment/snoezelen environments are already available, they can be used in namaste care intervention uk sessions. table : general namaste care intervention uk session costs based on assumed resource use across sessions (two sessions per day over a three-month period) general session assumptions number of residents number of staff in session number of relatives in session location dedicated room duration hours (plus preparation & clear-up) staff costs per session minimum (m) regular (r) enhanced (e) care staff ( namaste care worker for hours, other care staff for minutes) £ . £ . £ . director of nursing ( minutes) £ . £ . £ . home manager ( minutes) £ . £ . £ . laundry/housekeeping staff ( minutes) £ . £ . £ . kitchen staff ( minutes) £ . £ . £ . maintenance staff ( minutes) £ . £ . £ . administrative staff ( minutes) £ . £ . £ . total £ . £ . £ . capital costs per session pre session £ . during session £ . post session £ . total £ . consumable costs per session m r e the overall ambience – general room set up £ . £ . £ . specific and calming aroma £ . £ . £ . background sounds or music £ . £ . £ . background visual stimuli on a screen £ . £ . £ . physical comfort – seating £ . £ . £ . physical comfort – comfort and positioning £ . £ . £ . physical comfort – pain assessment £ . £ . £ . expressive touch – hand massage £ . £ . £ . expressive touch – foot massage £ . £ . £ . expressive touch – hand and face washing £ . £ . £ . expressive touch – foot washing £ . £ . £ . expressive touch – hair brushing £ . £ . £ . food treats £ . £ . £ . drink/hydration £ . £ . £ . tactile stimulation – soft blankets £ . £ . £ . tactile stimulation – rummage box £ . £ . £ . tactile stimulation – textured items £ . £ . £ . nature £ . £ . £ . personalised music £ . £ . £ . significant items – individual scents £ . £ . £ . significant items – memory box £ . £ . £ . significant items – pictures to share £ . £ . £ . significant items – reading aloud £ . £ . £ . use of dolls £ . £ . £ . use of animals – soft toys £ . £ . £ . total cost of delivering all components in a session £ . £ . £ . table : costs for example namaste care intervention uk and usual care sessions components example namaste care intervention uk session example usual care session the overall ambience – general room set up yes specific and calming aroma yes background sounds or music yes yes background visual stimuli on a screen yes yes physical comfort – seating yes yes physical comfort – comfort and positioning yes physical comfort – pain assessment yes expressive touch – hand massage yes expressive touch – foot massage expressive touch – hand and face washing expressive touch – foot washing expressive touch – hair brushing yes food treats yes drink/hydration yes yes tactile stimulation – soft blankets yes yes tactile stimulation – rummage box yes tactile stimulation – textured items yes nature yes personalised music significant items – individual scents yes significant items – memory box significant items – pictures to share yes significant items – reading aloud use of dolls yes use of animals – soft toys yes yes costs m r e m r e staff £ . £ . £ . £ . £ . £ . capital £ . £ . £ . £ . £ . £ . consumables £ . £ . £ . £ . £ . £ . total cost per session £ . £ . £ . £ . £ . £ . total session cost per resident £ . £ . £ . £ . £ . £ . nci-uk compared to usual care m r e net difference in costs per session £ . £ . £ . net difference in costs per session £ . £ . £ . doi: . /j.bbmt. . . poster session ii the purpose of this poster is to describe how unc hospitals’ be- gan its patient and family support program and how this program has impacted patient outcomes and patient satisfaction. stem cell transplantation patient family caregivers: a pro- gram focused on ‘‘caring for the caregiver’’ adornetto-garcia, d.l., williams, l.a., jackson, a., norman, l., lederleitner, c., mir, m. md anderson cancer center, houston, tx. one of the most important aspects of stem cell transplantation (sct) is identifying a family caregiver to care for the patient during the transplant journey. at one of the largest transplant centers in the county, the focus is to develop a comprehensive sct caregiver program. the program is based on current caregiver literature and on the qualitative research of dr. loretta wiliams. the pro- gram is based on six themes identified in dr. williams’s research and includes commitment, expectation management, role negotia- tion, self care, new insight and role support. there are three components of the sct caregiver program. the first component is the development of a comprehensive caregiver manual. the manual will contain both education and resource in- formation focused specifically towards the family caregiver. the second component is to provide caregivers with expressive art ma- terials such as journals, photo albums and scrap books. researchers have suggested that psychological symptoms rather than physical symptoms are the most overwhelming to most caregivers and that – % suffer from these symptoms. the use of creative activities may promote feelings of well being, provide comfort, and lower anxiety. the third component is to conduct quarterly caregiver appreciation weeks. during one week of each quarter, caregivers are offered opportunities to participate in a variety of activities. the activities include massage, journaling, scrap booking and bingo. providing this recognition is our way to acknowledge the caregiver as an important person in the sct journey. in summary clinicians can provide support to family caregivers by providing them with education and expressive arts, and by acknowl- edging their unique contributions to the sct patients. the devel- opment of the sct caregiver program will provide the framework to meet the needs of the family caregiver throughout their sct journey. nursing care of the bone marrow transplant patient in sep- tic shock with acute respiratory distress syndrome mulholland, k. froedtert hospital, milwaukee, wi. purpose: provide a case study of a complex bone marrow trans- plant (bmt) patient in septic shock with acute respiratory distress syndrome (ards). to educate nurses about the pathophysiology of and nursing interventions for a patient in septic shock with ards. rationale: due to the immunocompromised nature of the bmt patient, sepsis and ards are more frequently seen in this population. the effects can be devastating and often result in multi-system organ failure and death. nurses can play a key role in patient outcomes by recognizing the signs and symptoms of sep- tic shock and ards. it is necessary for nurses to understand the cur- rent treatments and interventions to provide high quality patient care. history: the case study is based on a thirty-eight year old male diagnosed with hodgkin’s lymphoma who underwent autog- olous and allogenic bone marrow transplants. he was admitted to the bmt unit with worsening renal insufficiency. the night before he was scheduled to have a mahukar placed, he aspirated some water with his nighttime medications. throughout the night his oxygen requirements increased. while having the mahukar placed, his ox- ygen level dropped and he was intubated. interventions: the pa- tient required critical care interventions, including multiple vasopressors, frequent ventilator changes, and continuous renal re- placement therapy (crrt). he was medically paralyzed and re- quired advanced cardiac life support. implications: bmt nurses need a current knowledge base in the care of the septic and ards patient. nurses should be aware of the risk factors for sepsis and ards and be able to recognize the signs and symptoms of both conditions. it is important for nurses to be knowledgeable of the current treatment and interventions for septic shock and ards in order to take quick action in these emergency situations. successful integration of complementary therapies in a combined adult and pediatric bone marrow transplant unit mueller, k., farmer, a., talbert, g., shea, t. university of north carolina hospitals, chapel hill, nc. the university of north carolina hospitals’ bone marrow and stem cell transplant program was established in . since that time, hundreds of transplants have been performed. many changes have occurred: new regimens, new chemotherapies and other medications, and the addition of biotherapies. unfortunately, the side effects of pain and discomfort during treatment still exist. pain medications have been part of the transplant process since the beginning. morphine, hydromorphone, fentanyl, and others have helped smooth the rough road of transplant. antiemetics have been used to reduce the side effects of nausea and vomiting. recently, complementary therapies have further paved the way to a more easily tolerated transplant experience. at unc hospitals, the bone marrow and stem cell transplant program has incorporated massage therapy, relaxation and medita- tion exercises, pet therapy, aromatherapy, healing touch, singing bowls, and prayer labyrinths into its practice for those patients in- terested in combining complementary therapies with medication to decrease the intensity of pain with treatment. patients may have massages in their rooms. they may use a prayer labyrinth to become grounded and connect with their spiritual selves. they also have the opportunity to use singing bowls to focus energy. our recreational therapists guide patients into meditation exercises using guided imagery, biofeedback, diaphragmatic breathing, and relaxation tapes to calm fears and relieve discomfort. the purpose of this poster is to describe the complementary ther- apies utilized by unc’s bone marrow and stem cell transplant program and the ways in which patients undergoing transplants have benefited from these therapies. preventing falls for hematopoietic stem cell patients wood, j.m., schuldt, t.l., eilers, j. nebraska medical center, omaha, ne. in accordance with joint commission’s national patient safety fall prevention goal, we have focused on decreasing falls in our he- matopoietic stem cell (hsct) patients. the medications and side effects that accompany hsct place this population at high risk for falls. sustained low platelet counts following transplant place the patients at greater risk for life threatening injuries in the event of a fall. in attempt to decrease our fall rate, we reviewed incident reports and conducted post fall patient interviews. we identified the high risk group to be the alert and oriented patients in their ’s and ’s, most involving toileting issues. interviews determined the most frequent reasons for not calling for assistance were not ac- knowledging increased weakness and a desire to maintain personal dignity and independence with toileting. we initiated an extensive education program to help patients gain an understanding of their fall risk and the potential seriousness of related injuries. patient/fam- ily education begins pre-transplant, is followed up on by the 	stem cell transplantation patient family caregivers: a program focused on ‘‘caring for the caregiver’’ 	nursing care of the bone marrow transplant patient in septic shock with acute respiratory distress syndrome 	successful integration of complementary therapies in a combined adult and pediatric bone marrow transplant unit 	preventing falls for hematopoietic stem cell patients microsoft word - gariglio_luigi_phd.doc gssps - graduate school in social and political sciences department of social and political sciences sociology / sociologia xxviii ciclo tesi di dottorato di ricerca phd thesis sps/ ; sps/ ; sps/ ; sps/ the 'cycle of doing coercion': an ethnography on the use-of-force and violence in both a prison and an asylum supervisor dottorando prof.ssa luisa leonini dot. luigi gariglio co-supervisor prof.ssa roberta sassatelli / this thesis is dedicated with love to my parents: eugenia scarna casaccio and paolo gariglio acknowledgments first of all i want to thank all prison officers directly involved in this study, partly touched or disturbed by it. i want to thank vito bonfiglio, the o.p.g. ‘commander’, raul e giusé. then i want to thank all the staff and prisoners who participated in a way or another to the research or have tolerated my presence in their world for quite some time. without their collaboration, trust and welcome this thesis would simply not exist. thanks go to sascha, sofia and gregorio and to elena ghilardi. i want to thank the ministry of justice, the director of the dipartimento dell’amministrazione penitenziaria (dap) and his staff for working on the clearance procedures with openness, and attention and for granting me unprecedented access to the facilities. in particular, i thank the staff of the ‘ufficio stampa e relazioni esterne’, the staff of ‘ufficio studi e ricerche’, the ‘d.g. detenuti e trattamento’. furthermore my special thank goes to pietro buffa, director of the ‘provveditorato regionale dell’emilia romagna’ and his staff. i also want to thank the director of the’ istituti penitenziari di reggio emilia’, the director of the ‘dipartimento di salute mentale e dipendenze patologiche della regione emilia romagna’ and the medical director of the o.p.g., valeria calevro, who firstly introduced me inside the facility and has always been open and proactive in making my work as smooth and ‘easy’ as possible during the entire ethnography. i thank the university of milan, the department of social and political science and the graduate school gssps for the great opportunity they gave me trusting me in such a challenging effort. i thank the university of oxford, centre for criminology, and in particular the director carolyn hoyle, and mary bosworth for inviting me as a visiting fellow and for being very handy and supportive. alpa parmar for allowing me to teach visual methods within her qualitative method course at oxford law faculty. i also thank richard martin and sarah turnbull for their precious help and consideration. then, federico varese working at the sociology department at the university of oxford for his friendly comments. i thank, luisa leonini, my tutor, for her support, encouragement, trust, and for the time she dedicated to me. i thank roberta sassatelli who has always been there each and every time i contacted her with my questions, requests of clarifications or suggestions, and with my doubts; her expert comments, critiques, support and friendly help have always been a strong intellectual challenge, a psychological help and a nice breeze of fresh air. i also want to thank warmly mario cardano who has firmly guided me as well with his methodological suggestions and lessons, his support and his sharp comments and brilliant illuminations. without roberta and mario, this thesis would have been very different indeed. i also acknowledge the kind attention and generous suggestions of antonio chiesi and enzo colombo. furthermore, thanks to: giampietro gobo, claudio sarzotti, franco prina, amedeo cottino and giovanni torrente. lastly, i want to thank mauro barisione for his constant support and for the bulk of work he has done friendly and with a smile to make things going easily and effectively during the entire phd. contents . introduction . use-of-force versus violence: interpreting coercion . studying the prison officers' use-of-force and violence: an interactionist approach . the organization of the use-of-force in practice: a 'street-level bureaucracy' within the wall . ‘implicit-coercion' on the wing . the 'cycle of doing coercion': symbolic and credible threat on the landing . the bodily use-of-force . the natural history of the research and some methodological notes a few concluding thoughts appendix. ethnography, photography, voyeurism and the disciplinary frame: a note on visual methods references chapter introduction this thesis focuses on one feature of prison officers’ job: the use-of force (or, as i call it, ‘doing’ coercion). it does it from an interactionist micro- sociological perspective. based on one year and a half of observation within an italian custodial complex hosting both a prison and an asylum, it aims to explore ethnographically the implicit and explicit practices of threatening and/or actually using force bodily on the landing. custodial institutions have long been considered as coercive facilities in their very architecture and design. coyle ( ) calls them ‘coercive institutions’ (infra, chapter ); moreover, in the prison literature, both symbolic and bodily coercion has often been considered one of the main features characterizing on one side the daily interactions within custodial settings, and on the other, the prison officer’s job as such. however, these topics have hardly ever been the focus of any monograph. prison officers’ threat and actual use-of-force are timely issues for at least three reasons: firstly, they often have a traumatic impact on prisoners’ – and sometimes on officers' – body integrity, health and mental health as well as, more generally, human rights. secondly, coercion, and its uses and abuses, are very timely issues on the media and public international discourses, not only in relation to prison, but also to immigration detention centres, forensic psychiatric hospitals (also called special hospital). lastly, within the academic agenda, studying the threat and the use-of-force can show some dimensions, routines and sequences of interaction as to how power is exerted in practice by law enforcement officers on the landing. to the best of the author's knowledge there is not any monograph focusing on the use-of-force on the landing by observation as yet; this thesis does it mainly observing and investigating the emergency squad interventions during so- called critical events. the ethnography was conducted staying side by side with the officers on duty on the wing and observing their daily job. however, this research was neither designed to be a critical research, nor an appreciative one. its goal is to start shedding light on one fundamental practice in prison work: the use-of-force. the ethnography was conducted in a country in which coercion is often clearly in the picture on the wing and prison qualitative research is still in its infancy; this is the first independent academic ethnographic research on the issue. this thesis elaborates on the literatures of prison sociology (and criminology) and the micro sociology of violence. it is an empirical research mainly grounded on ethnographic observation and ethnographic interviews (spradley ; gobo ); yet, it also partially adopts semi-structured interviews and visual methods to integrate its accounts. it will contribute new knowledge in three ways. firstly, this thesis will contribute to the growing scholar debate on power in a prison setting and, more generally, on policing. this issue has long been crucial in prison literature; yet very little is known from southern european countries where power relations in prisons have hardly ever been studied so far. secondly, it will fill a gap in the knowledge as to how the use-of-force is exerted in practice by exploring, mainly through observation, how the threat of coercion and the bodily use-of-force are exerted on day-to-day basis on the landing. here, however, the goal is not so much to articulate the 'inconvenient criminological truth' (sim ) already grasped by activists and prisoners’ voices in order to criticise particular wrongdoings or institutional violence. instead, it is intended to show the lawful, yet problematic and discretional activities daily performed on the landing that imply, explicitly or explicitly the- use-of-force. this work does not address the issue of doing coercion during large revolts or in exceptional situations in which particularly heavy measures must be enforced. nothing like that has occurred in italian penitentiaries over the recent years. thirdly, this research will also contribute to the fields of symbolic interactionism, policing, and the micro-sociology of violence. despite adopting the interactionist approach, however, this monograph intends to slightly differentiate itself from the micro-sociology of violence by putting a far greater emphasis on both, the structural condition of domination that frames the relationships between the keeper and the kept, and on the well-known vectors of inequality that strongly impinge on those relationships, such as class, race and mental health, thereby introducing new nuances to what we might call stricto sensu an interactionist approach such as collins ( ). this thesis draws from observation. it clearly distinguishes itself from the works on power mainly grounded on discourses and narration (atkinson ). emerging during interviews, or circulating in media reports or official accounts. yet, by adopting observation as main tool, this work does not pretend to offer a better ontological truth; it simply intends to introduce new interpretation to integrate the extant ones. it does it by discussing what officers and prisoners do in front of an ethnographer, rather than discussing what they say they do. moreover, this manuscript shows that doing ethnographic research can help to better understand crucial issues such as the use-of-force, or violence without necessarily being prejudicial on anybody's side. yet, it also stresses, once again, the necessity of doing research reflexively. the use-of-force is a crucial legal feature of prison officers’ job. starting to grasp how coercion is exerted in practice can help both to better understand the traumatic and complex world in which so many people live and work, and to better address the issue of prisoners' and officers' own wrongdoings and criminal acts. although there are many books on crime and punishment, prison officers and prison violence, only few studies deal with the use-of-force straightforwardly, and those doing so, very often have a strong critical perspective or a normative and political stance. none of these publications (contra, ricci and salierno ) addresses any italian site. this manuscript will therefore introduce a partially new interactionist approach and a new focus in the debates about power, coercion and violent interactions and, by doing so, it will also offer some thick representations and problematic issues to policy makers as well. for the first time it will also possibly present a visual ethnographic account on ‘doing’ coercion collected for the scope. italian alleged institutional violence and scandalous custodial institutions il carcere in italia (ricci and salierno ) is the first and only italian quasi- academic large-scale research on the keepers and the kept; einaudi published it already in . it was written by a young sociologist and an ex prisoner – and 'fascist thug' as he called himself in his autobiography (salierno ). il carcere in italia started by arguing: '[t]his book is the result of a research on the of the italian custodial institutions' violence’ (ricci and salierno : ; emphasis added) . it included a chapter titled the prison officer ( – ) that investigated for the first time prison staff . that book was initially a ba thesis written about forty-five years ago. due to the exceptionality of the research content it became a book. back then, the italian '[fascist] prison rules' had not yet been replaced by the extent ‘[republican] prison rules’ dating . since its first publication in , il carcere in italia has been reprinted time and again, and had a significant impact on the public opinion for a certain period. on the one side, it was a very strongly politically bias account of the italian situation inside in the aftermath of the s and its political and civil rights movements; on the other, it represented for the first time an extensive first- hand account of the situation within the wall. since that publication, italian ethnographies have neither addressed the use-of- force, nor, violence inside custodial institutions; let alone a sociological understanding of it from an interactionist perspective. einaudi is the publisher of antonio gramsci lettere dal carcere ( ) as well as the quaderni dal carcere (six vol.; the first one published in . einaudi has been one of the most authoritative italian publishers since its foundation in . ricci and salierno ( ) interpretation of violence clearly embed a negative moral judgment that today might resonate with the interpretations of violence of both wieviorka ( ) and sim ( ). here we adopt a more neutral interpretation of that word. then, prison officers were still a military police under the authority of mhe ministry of defences; in that book the authors dealt with the prison officer organization, the relationships among colleagues, as well as the relationships between officers and inmates. although academic research on the issue is missing, a few articles and books softly introduced the issue at stake in a way or another either within or against the commonsensical paradigm of the 'bad apple' . over the last twenty years or so, only few articles addressed the use-of-force in custodial institutions directly. to the best of my knowledge, only one article is published in italian; yet, it exclusively reviewed the prison legislation of england and wales in a polished way without any single comparative comment on the italian legislation nor, to the italian prisons’ situation, the actual prison officers’ practice, and alleged misconducts; yet, that article (giacalone ) was written by a senior prison officer and was published on la rassegna penitenziaria e criminologica ; furthermore, it did not explore any sociological dimension. notwithstanding this ‘academic gap’, over the last ten years, one episode of 'prison violence' (edgar et al. ), among others, had a particularly significant media coverage in italy. in december , as a direct consequence of a previous prison officer’s assault in the prison of the city of asti, in north- west of italy, two persons in custody were victims of a double jeopardy, violence and humiliation (buffa a); the officers wanted to 'give a lesson' to the two prisoners. that episode, the following trial, and then the sentence, had a strong echo in the national media and re-opened a latent scar in at least part of the public opinion still very sensible about the italian fascist history and the well-known police behaviour during fascism. what emerged during the trial even became the subject of a theatre piece titled la carogna dentro di me an informed, yet politically oriented, critical rapport on the situation of italian prisons is regularly published by antigone. see the antigone pre-rapport 'antigone in carcere. pre-rapporto sulle condizioni di detenzione luglio ' (in italian). (http://www.ristretti.it/commenti/ /luglio/pdf /prerapporto_antigone.pdf)( - - ). it is the official journal of the dipartimento dell' amministrazione penitenziaria (d.a.p.); the italian equivalent of the british prison journal published by hm prison service. (sarzotti ). regret and critiques were not only publicly upheld against the perpetrators but also against the prison officers as a professional group and the italian prison system as a whole. prisons, in italy, are often understood by the public opinion 'as a dull place where whatsoever [cruel] can happen' (buffa : , my translation). other similar episodes allegedly occurred in reggio emilia custodial complex between and obtaining significant local media attention . my field notes and interviews support buffa's quote (see above) on the public critical perception of the italian prison system. inside the custodial complex, in fact, officers would often show their critical stance on either the media coverage or the public discourses on the prisons and the prisoners. i have heard different versions of those critical stance time and again. below, i will quote one officer who spontaneously introduced the point brilliantly during an interview. his position has often been shared with his subordinates in front of me, talking about it whenever something appeared in the news related to the issue in a way or another. his quote below resonates with the officers' interpretations and opinions as to what the 'italians' would think both about the criminal justice system, and the prisoners’ victimization; '[w]hen they [in other occasion words such as: criminals, thieves, murders, serial killers and so on would be used] are out there, they are all [described as] very dangerous criminals that must be cached, arrested, put in a cage and ...throw away the keys! even persons that are nothing more than petty criminals are usually treated like that by the people. eventually, they end up in custody and enter the prison. by entering the prison those very violent and dangerous the author is an authoritative italian sociologist of law (see also: sarzotti ). however, the case of alleged double jeopardy against police officers was dismissed on a technicality: all prison officers are free and will not be brought befoure a court (source: la gazzetta di reggio, november, the th : ‘violenza in carcere: scagionati agenti. l’accusa di lesioni partì dai quattro fratelli tunisini rhimi rinchiusi alla pulce: il caso è stato archiviato’ http://gazzettadireggio.gelocal.it/reggio/cronaca/ / / /news/violenza-in- carcere-scagionati- -agenti- . ?refresh_ce). criminals, i do not know how...and why... they become the victims. it's enough for them to arrive here and they are [suddenly] the victims, and we become the 'aguzzini' (perpetrators of violence) (source: video recorded, interview with a senior officer). another crucial point about the contemporary public discourses that circulated on the media about the italian prison system and prison officers, specifically regards the scandal of the forensic psychiatric hospital (o.p.g.) that directly involved one of the two facilities on which my work is focused; in fact, the facility in which most of the observation took place. a ‘parliamentary inquiry on the national health service’ opened a large public debate that was quickly afterwards publicly defined a scandal . the dramatic and illegal conditions of detention that have been shared widely on mainstream media urged a parliamentary discussion . in fact, over a very short period of time a new law was written, discussed and voted. it formally ordered the almost instantaneous and definitive end of those scandalous institutions and the rethinking of the entire forensic psychiatric hospital system. the so-called scandal of the o.p.g.s has been the most serious recent scandal regarding the italian prison system and the institutional violence in italy; yet, not the only one (chiarelli ). the former president of the italian republic the 'commissione parlamentare di inchiesta sull'efficacia e l'efficienza del servizio sanitario nazionale', so-called 'commissione marino', was instituted by the italian senato the th july http://www.senato.it/documenti/repository/commissioni/servizio_sanitario /relazione_oopp gg_doc_xxii-bis_ .pdf . previously, other institutional inquiries and even few directors of those six institutions had repeatedly lamented the precarious situations in which they had to manage those institutions with no effects at all. on the contrary, the last parliamentary enquiry had a huge impact and determining the order to close those institutions (which, by the way, only formally occurred). this was due, not only because the public opinion was probably more aware and organized on the issue than before; but also, because scandalous images officially recorded for the parliamentary commission had been broadly broadcasted and diffused on tv and on the web. the footage was recorded by the video maker corio who also produced a winning-prize documentary. see this article and video interview on the national newspaper il fatto (source: il fatto, november, th : 'ospedali psichiatrici, gli internati vengono dimenticati dietro le sbarre. le strutture fuorilegge sono tutte operative') http://www.ilfattoquotidiano.it/ / / /ospedali-psichiatrici-gli-internati-vengono- dimenticati-dietro-le-sbarre-le-strutture-fuorilegge-sono-tutte- operative/ /#disqus_thread. giorgio napolitano – then in duty – made an official speech at the nation at the end of in which he defined those forensic psychiatric hospitals (o.p.g.) a “real horror unacceptable in any civilized country” . moreover, a popular news-week magazine, l' espresso, defined those institutions lager . this is not a critical study on institutional violence what has just shortly been introduced is only one side of the issue at stake; yet, i want to put it clearly, this thesis is not a 'critical criminology' kind of study. it is a completely different sociological one, in which the situation of what i called the 'cycle of doing coercion' (or the ‘cycle of the use-of-force and violence’) will be unpacked studying the actual officers’ use of a set of ‘tools of influence’ (infra, chapter ), as well as the threat and use-of-force from a micro sociological perspective. at the centre of the study is the interaction between the keepers and the kept in a particular situation, and not anybody’s moral judgement about it. moreover, as already said above, this thesis is not intended to target any large- scale collective riots like those that occurred in italy back then (see, ricci and salierno ; melodia ). it cannot do it for three main reasons: firstly, collective riots are a completely different kind of social phenomena that, by definition, do not occur on the landing repeatedly on day-to-day basis; therefore, they should be investigated differently. secondly, they have hardly ever occurred in italy over the last ten years, if at all. lastly, but more importantly, i have neither directly observed any of such events during my research, nor have i collected enough material about any of such previous (source: la stampa, april, st ). http://www.lastampa.it/ / / /italia/politica/opg-da-napolitano-s-alla-proroga-ho-firmato- con-estremo-rammarico-g e hkcfuez rmzvuvugyn/pagina.html. (source: l’espresso, october, st ). http://video.espresso.repubblica.it/tutti-i- video/opg-ecco-i-manicomi-lager/ / . occurrences to get a sufficiently clear ethnographic understanding of it so far. in conclusion, this work uses the expression prison officers that is commonly used in uk. although, penitentiary police would be a better translation of the italian polizia penitenziaria. therefore, both expression will be used interchangeably. moreover, and more importantly, also the expressions inmates, convicts, prisoners, kept and so on are used without any particular connotation despite the particular political or academic traditions in which any of those expressions might come from. here, the keepers and kept are simply called in different ways for writing-style purposes. shape of this thesis chapter introduces the normative approach to power and coercion on the landing selectively addressing the literatures of prison sociology, and policing that have developed over the last thirty years or so. it outlines the ways in which the power relations between the keeper and the kept have been conceptualised so far by both the scholars adopting a more or less appreciative approach, and by those adopting a more critical one. in particular, it will review some of the normative labels used to typify the 'means of influence' (kauffman ) that i will call ‘tool of influence’ discretionary used by prison officers to rule the wing in day-to-day patrolling operations. firstly, it will propose a twofold distinction. on one side the legitimate non-coercive ‘tools of influence’ (as i called them); they are mainly forms of verbal negotiations usually occurring on the landing between one – or a very limited number of staff – and the prisoner(s). usually non-coercive tools of influence would employ either persuasion or inducement; sometimes also the implicit, or tacit, threads of the use-of-force. on the other, the legitimate and explicit coercive ‘tools of influence’ that would include: both the explicitly threat of the use-of-force, and the actual bodily use of it. these would normally be performed by a larger group of officers and would be the tools of influence through which, at the end, the prisoners’ compliance would forcibly be gained with or without the prisoners’ cooperation or resistance. the last section of chapter introduces the necessity to overcome the simplification of the binary distinction between legitimate and illegitimate practice of doing coercion, already addressed in the literature, by emphasising the existence of a large 'grey area' between the two (terrill ). manipulation in this chapter is placed in that 'grey area'; moreover, all the other 'means of influence' previously described could also be interpreted through terrill’s lens. before concluding it will shortly address the issue of the criminal uses of coercive ‘tools of influence’ and the related issue of institutional violence (sim ). chapter is called ‘studying the prison officers’ use-of-force and violence: an interactionist approach’; the very ‘generous’ clearances given to the author have allowed the researcher to observe the officers’ practice of using force face-to-face participating to the actual threatening and/or violent interactions occurring between the keepers and the kept. the discretionary power that the prison director has used to deregulate the ethnographer’s access without enforcing any strong constraint in terms of time and place to his fieldwork has been crucial here; de facto, the ethnographer’s access was granted at any time without any previously note or appointment. the security manager could of course have stopped the researcher’s access at any time for any reason without any justification; yet he has never done it. trust has slowly entered into the picture; the process of building trust is also something that must be reflexively addressed both from an ethical and methodological perspective (infra, chapter ). the ‘funnel’ structure of doing ethnographic research generated a large amount of empirical material; yet, the most of it has progressively focussed on ‘doing’ coercion, or put it differently on the threat or actual use-of-force. despite the collection of both ) observations through participating into the day-to-day routine on the wing, and ) representations of it mainly collected via formal interviews, this thesis mainly focuses the analysis on the observations of practices rather than on the representation of those practices. doing ethnography, the interactionist theoretical framework was therefore selected as the more appropriate providing a good toolbox to deal with chains of observed interactions; in particular interactionism appeared to be the most adequate framework to interpret what, gradually, became clearly visible and audible on the field: the routinely practice of threatening and doing coercion that would occur time and again on the landing in front of the ethnographer day in day out. the main conceptual tools considered throughout the ethnographic experience are mainly grounded on both the goffmanian interactionist micro-sociology and the micro-sociology of violence (collins ) as well as other interactionist approaches more attuned with taking into account the vectors of inequality (hochschild ) so crucial for understanding the prison field in general and the italian prison field in particular. i also owe intellectual debt here to popitz’s the phänomene der macht ( ) and, particularly, to the theoretical analysis of ‘doing violence’ and ‘doing threat and being threatened’ (my translation). i thank mario chiesi for his lessons and for his suggestion to read popitz. by presenting substantive ethnographic knowledge, this chapter will also introduce the main conceptual tools adopted in this thesis. it will be divided into three sections. firstly, drawing from extensive ethnographic observations, one section will critically discuss the interactionist’s toolbox. secondly, a following section will focus on the issue of discretion in using force. some empirical examples will illuminate the relevance of the prisoners’ social position as well as the officer’s more or less authoritarian cultures in the process of doing coercion in practice. the extremely different kind of treatment regularly reserved by officers to two very different types of prisoners at the extremes of the internal informal hierarchy – both often present on the wing – will be disclosed. on one side, the prisoners belonging to well-known 'organized-crime families' and, on the other, those belonging to any of the marginalised, vulnerable and stigmatised 'roman families' who, ‘out there’ would usually live in roman camps, either legal or illegal ones. other examples of less extreme differences of treatment related to status, race and mental health condition, far less consistent, will also be considered – yet, they show a less consistent discretionary treatment in which other factors would impinge as well. finally, the last section of chapter will shortly address the role of hyper masculinity performed by officers 'on stage' using explicit coercive tools of influence, and the far more nuanced and multi-layered plural masculinities performed by some officers, and resisted by others, either in their use of non- coercive tools of influence in the backstage on duty, off duty with friends. chapter deals with the ‘organization of the use-of-force in practice’. it will illustrate the main characteristics of the organization of coercion in the custodial complex, then focusing on the particular organization for doing coercion in critical events and on the emergency squad. observations have been the main source of data; yet, reconstructing all the formal roles and duties have also required a few semi structured interviews with key informants such as the area manager, the governor and some senior officers; yet this ethnography is not focused on the organization as such. the scope of this chapter is therefore limited to helping the reader not 'to get lost' inside the ‘secret world’ in which coercion is recursively performed time and again. this chapter will be divided into three parts. firstly, the initial section will describe the bureaucratic organization of coercion, its officers' formal roles and the staff relationships with one-another in the particular organization observed. then, the second section will reconstruct the prison officers' chain of command in reggio emilia, particularly referring to the actors directly involved in the use-of-force. next, the third section will address three informal fractures that shaped to a greater or lesser degree that chain of command. lastly, the fourth section will address in particular the emergency squad, thereby introducing the team whose officers’ main duty is threatening and doing coercion in a hyper masculine way. chapter and the next two chapters are deeply intertwined with one another. chapter focuses on what officers do when they routinely patrol the wing, either in calm and boring situations or during more violent situations that may or may not lead to the start of what is here called and reconstructed as the ‘cycle of doing coercion’ (that i also call the’ cycle of the use-of-force and violence’ or simply ‘the cycle’). before the cycle starts, the entrance of the emergency squad is only implicitly in the picture and the wing officer(s) on his own manages all the issues occurring where he is on duty. both chapter and will instead focus on the emergency squad intervention on the wing. this chapter will firstly outline the three main phases and the main characteristics of the cycle adopting the interactionist perspective and toolbox presented in chapter . the cycle shows the configuration of the routines of the use-of-force that would be usually cyclically adopted on the wing after a formal or informal definition of a so-called critical event. in particular, it will highlight on one side, the recurrent sequence of events and the cyclic chains of interactions routinely performed by the wing officer, the security manager, and the emergency squad when dealing with institutionally labelled 'critical events' to reinforce soft-power or to overcome it adopting hard-power by threatening or doing coercion bodily. on the other side, it will also provide few thick descriptions, or narrative accounts, of exemplary interventions observed during fieldwork that can only be represented in very general and sketchy ways by the model. then, the second section will address the recursive routines occurring on a daily basis. in particular it will address officers, doing routine work on the wing, turning a blind eye, and managing 'normal' local crisis ‘minding their own business.’ lastly, the chapter will examine the initial stage of the cycle more in depth: the pre-intervention phase. a phase very similar to the one presented in the second section; however, a phase in which, the wing officer asks for the security manager intervention; an intervention where the manager would usually start by informally negotiating with the prisoners. the entrance of the security manager on the wing is a clear turning point that starts the ‘cycle of the use-of- force and violence’. a failure of the negotiation would clearly move the situation to the next phase in which the emergency squad would enter the wing: the intervention phase. usually, the security manager’s arrival would help the officer in his effort to de-escalate the situation to ‘normality’. sometimes, however, the emergency squad must enter into the picture, threatening (chapter ) and/or doing coercion (chapter ). chapter is about what i called ‘soft-coercion’ and specifically deals with both threatening coercion symbolically and credibly; it is about the initial stage of the emergency squad’s intervention in which soft-coercion is at stake. 'soft-coercion' is here defined as any kind of interaction in which a threat of doing coercion is either symbolically or credibly performed by at least one officer of the emergency squad to at least one prisoner. the intervention phase of the cycle would start with the arrival of the emergency squad on the wing. the entrance of the squad would clearly start soft-coercion. it is important to note that not only the prisoner who is threatened depends on the officer's threat, but also that the officer’s who is performing the threat depends on – and becomes constrained by – his victim’s decisions and acts: there is a clear issue of credibility and reputation at stake here for either actors involved in the interaction-chain. it emerged clearly in the ethnography that not only the actual use-of-force, just like violence, is costly (collins ), but that threatening the use-of-force is costly too. this chapter will firstly outline a description of a few examples of the three main recurring reasons that urge the squad intervention. the second section will describe the officers’ performance and display of the symbolic threat of coercion performed by entering the wing as a platoon and some common traits of these performances as well as a few ethnographic examples. lastly, the third section will address the crucial stage of the credible thread of coercion, following with some examples of the scripts normally used by officers to communicate that ‘hard-coercion is just around the corner’ to one another as well as to prisoners. this chapter will conclude explaining that most of the time that the intervention squad enters the wing, no hard-coercion is needed to force de-escalation. yet, this is not always the case. chapter is called ‘the bodily use-of-force’ and addresses the actual officers’ bodily use-of-force. usually, coercion would only be used after following more or less precisely the ‘cycle of the use-of-force and violence’; in particular it would normally be introduced by a stage in which coercion is threatened rather than performed like chapter has shown; however, as it has been observed more than once by the ethnographer, an officer’s assault (or alleged assault) would probably directly lead to officers doing coercion bodily, rather than a less hard intervention independently from further prisoner behaviour. this chapter, not only will discuss what the ethnographer has observed on the wing, but will also disclose a few anecdotes from officers’ video recorded interviews on their descriptions and interpretations of doing coercion bodily in which officers not only deny but also proudly claim and re-claim their disputable behaviours. (that large amount of those representations will thoroughly be addressed in another publication). this chapter will be divided into four sections. firstly, an introductory discussion on the idea of credible threats, and on the relationships between credible threats and bodily coercion reasoning around the construction of the squad’s reputation. secondly, one section called ‘opening the barred door: doing coercion heavily’ will introduce the minutia of events that had occurred in few particular occasions around the moment of opening the barred door to ‘start the fight’. thirdly, some descriptions of episodes of doing coercion bodily observed will be reframed and narratively described. lastly, a final section will address the end of the phase of doing coercion: the practice of manual and mechanical physical restraint by which the prisoner is both bodily and symbolically overdue by the squad. chapter is methodologically oriented and deals selectively only with few relevant methodological and ethical issues that have emerged doing this particular ethnography on doing coercion in italy. chapter use-of-force versus violence: interpreting coercion introducing this chapter it is worth anticipating that following the theoretical approach adopted in this ethnography the officers' use-of-force will be treated as a particular type of violent interaction (collins ; athens ) without any moral judgment embedded in it. despite the fact that either expressions ‘using force’ or ‘using violence’ would implicitly embed a moral judgements both in the public sphere and in the criminological use of those expressions (ray ). the study at hand analyses the use-of-force insteraction-chains as violent interactions in which a sequence of bodily (and symbolic) exchanges between two or more human being in a custodial setting occurs. furthermore, the focus will not only be restricted to the actual bodily use-of-force between one or more prison officers and one or more inmates, but it will also include the threat of it. any intentional moral judgement will therefore be clearly expressed by the author using an adequate adjective or adverb, such as 'bad', ‘wrong’, ‘abusively’ thereby saying i.e. bad violence or wrongdoing and so on. by the same token, the expression 'use-of-force-and-violence' used in the title refers explicitly to the particular interactions occurring in prisons as a consequence of an episode or encounter institutionally, either formally or informally labelled ‘critical event'; unpacking those particular events is the main topic of this thesis. we now turn to introduce some of the ways in which the issues of coercion, force, and violence have been used from other academic perspectives contiguous to sociology. of course, only a limited selection of the criminological literature specifically resonating with the issue from a sociological or anthropological perspectives will be considered here. any new résumé of the well-known criminological models of interpreting the issue of conflicts in prison will not be proposed here once again. both deprivation model and importation model are outlined in all criminology text books . in the next sections of this chapter a few normative assumptions that has been influential among scholars dealing with the issue at stake will be introduced. by doing so we intend not only to better situate this ethnography on 'use-of- force-and-violence' interactions within a larger research community than the sociological one, but also to resonate explicitly on the literatures that had such a great influence in the development of the researcher's education and criminological interpretations hardly ever, if at all, have referred to the sociological study of violence (collins , , ; athens , , ; weenink ). those studies are crucial in our ethnography as to what they deal with the observation of actual situations and interactions occurring in front of the ethnographer or discursively interpreted by him or her in which force has been used. understanding of the issue ; in particular this chapter draws extensively on both fields of prison sociology and police and policing. the use-of-force (or coercion) william terrill’s recent chapter on ‘police coercion’ ( ) – terrill considers coercion as a synonymous of the use-of-force; and so do will i here – clearly shows the existence of an extended 'grey area' of legitimate/illegitimate use-of- force in between the clearly legal and the clearly illegal everyday police practices that are regulated by law; according to terrill, that grey area has not yet been thoroughly conceptualised in theoretical terms ( ) . the definition of coercion would often be commonsensical and not adequate to be used analytically. the quote from an old paper presented below is still valid today although some interesting papers have afterwards been published on the issues of power and resistance in prisons: [i]n theory, the threat of force by guards is always present [in prison; yet] the literature lacks any systematic analysis of violence as a mechanism of social control [...]. this neglect leaves an unbalanced picture of the structure and process of prisoner control (marquart : - ) . before continuing to outline the different and sometimes contrasting definitions adopted in the literature to distinguish the diverse aspects, degrees, legitimacy and lawfulness of the use-of-force, it is necessary, first of all, to clearly stress one core attribute and characteristic of the prison officers’ job as such. doing this here is not a neutral decision at all; on the contrary, it is i pay a tribute here to mary bosworth, professor of criminology at the university of oxford. her lessons at the centre for criminology have been particularly insightful. empirically, then, it has not been studied ethnographically in custodial setting within an interactionist perspective. it is worth noting that marquant has a very political approach; the author here, following weber, tries to study interactions analitically without emphasising any pre- conception or political interpretation of the 'data’. intended to unmask the researcher's own realist and pragmatic position on the issue. following william terrill writing on the police coercive tactics ( ), it can be argued that hopefully 'a portion (a good portion) of the coercive tactics used by the police [and prison officers] is wholly necessary and legal' ( : ; emphasis added). i would add that the coercive tactics not only are in the prison officers’ tool box, but they are among those tools embedded in the duties that characterise the specificity of the prison officer’s job when compared with other prison staff (bennett et al. ) such as, i.e. social workers or psychologists. in other words, the threat of the use-of-force, or the actual use-of-force are lawful (or legitimate in a weberian sense) duties, among others, that officers must use proportionally if and when strictly necessary, and do actually use in discretionary fashions, to manage critical situations day in day out. in the quote from prison officers and their world (kauffman ) presented below, there is one basic-grade officer’s personal interpretation of a righteous way of using force. the officers explains his or her way of handling an inmate holding a weapon in his cell. instead of promptly rushing to the use-of-force, he or she said, it’s a lot easier [for prison officers] just to go down [to an inmate cell] and tell the men to give you what you want, and if he gives it too you, then you don’t have to go through all that trouble. if he doesn’t give it to you, well, ok, then you go in [the cell] and get it (kauffman : ). the previous quote shows a keeper's narrative saying that he or she would try to use his authority (or i would say a threat; infra, chapter ) before to ‘use his or her hands’; yet, it neither tells us much about any actual particular situation that has happened, nor does it address any possible future scenario in which a particular officers could decide whether or not opening the barred door and entering the cell to 'get it'. the distinction lawful vs legitimate is discussed in the next chapter. recalling the classical weber's interpretation of the state, it can be inferred that until now law enforcement agents, including prison officers, have been one of the public agency that has had the legitimate authority to implement in practice the monopoly of the use of physical force within a given territory or within a particular facility; elias ( / ) considers the state monopoly of coercion, and the parallel reduction of the use of violence as a means to solve disputes between citizens, as a crucial trait of the process of civilization . a process that not only progressively leave the monopoly of coercion to the state apparatus, but also tends to hide the state violence from public gaze relegating it into closed institutions or confined situations (also see sim ; drake ) . according to garland: [o]ffenders are now routinely sequestrated from the sphere of normal social life, and the ‘problem’ that they represent is managed ‘off-stage’, in a discrete institutional setting which carefully controls its impact upon the public consciousness…the business of inflicting pain and deprivation upon offenders has come to seem rather shameful and unpalatable...though it is an activity which is deemed to be necessary none the less, so our sensibilities are preserved by removing this painful undertaking to scarcely visible sites on the margins of society and social consciousness ( : ; emphasis added). another useful introductory understanding of the relationship between another law enforcement agent' work (the police) and the use-of-force is given by bittner, a liminal author on policing. he argued that scholars of punishment that explicitly addressed elias that imbue our understanding of coercion are (dunning and mennell ; garland : – ; pratt ). diiulio ( ) put the relationships between state power and the prison institution clearly by writing: ‘[b]y most definitions, the state (or government) is the institution in society that has a monopoly on the legitimate exercise of coercive power. imprisonment represents one of the most concrete embodiments of state power’ ( ). the role of the police [and prison officers] is best understood as a mechanism for the distribution of non-negotiable coercive force employed in accordance with the dictates of an intuitive grasp of situational exigencies ( : ). yet, regarding prison, that definition should be more nuanced; as it will be clear in chapter presenting the 'cycle of the use-of-force and violence', force is far more often threaten that actually used on the landing. according to collins ( ; ) interpersonal violence usually happens rarely (proportionally to potentially violent encounters). in other context, such as organised crime (varese ), credible threats normally suffice (campana, varese ) as well without the necessity to actually use force all the time. in a previous publication, bittner stated that police are monopolist of force in civil society (bittner ); i would rather say that law enforcement agency more broadly –such as police, prison officers, security companies, and so on – have all together the monopoly of the bodily use-of-force in practice. however, all those previous definitions are very broad normative assumptions that do not tell us much, if at all, about what is actually happening in any particular circumstances to particular human being in a particular place when they interact or relate with one another . that's one of the reasons why we will adopt the sociological interactionist approach in which the interaction is the focus of the study. in prison officers and their world, kauffman ( ) has focused on prison officer addressing the use-of-force and violence clearly distinguishing between the coercive legitimate practice on one side, and the prison violence on the other. kauffman – an ex prison officer herself – interviewed prison officers at furthermore the crucial issue of discretion will be addressed in a next section titled ‘on officers’ discretion’. by now it is enough to add that is well known that enforcing the law in day-to-day situations hardly ever occur 'by the book' (goffman a; sykes ; clemmer ). work both in prison and in a forensic psychiatric hospital in usa in the s; in one chapter she focused, on one side, on prison officer's 'power in prisons' ( – ) – distinguishing between their authority, persuasion, inducement, manipulation, force and coercion – and on the other, on inmates' power ( - ). in another chapter kauffman then directly addressed ' [bad] prison violence' in a quite unique way ( - ); in fact, not only did she discuss 'inmates violence against inmates' and 'inmate violence against officers' like most recent books on prison violence have done so far, (edgar et al. ) – thereby labelling as violent only the kept (edney ; sim ) – but she also concluded the chapter with two sections in which she focussed on the 'bad' violence perpetrated by prison officers, by doing so overcoming the commonsensical distinction that normatively states that inmates use violence and officers use force . however, kauffman ( ) did not say that much about how the use-of-force was exerted in practice on the landing on day-to- day basis, nor did she show any 'typical sequence' of action (gambetta : ; see also: athens ; collins ). kauffman, in fact, did not perform any observation (yet, having been an officers herself she had some experience; not necessarily in emergency squad, though), she only used interviews to write that book. trying to grasp the dynamic structure of the use-of-force by conducting interviews would have not be a reasonable goal – in fact, it was not her goal. interesting first hand voices narrating episodes of 'bad' violence, and officers’ interpretations of those episodes were collected and analysed discursively instead. this ethnography i salso grounded both in a prison and in a forensic psychiatric hospital. see also snacken ( ). surfing the literatures looking for the use-of-force surfing the prison literature three main problems emerged. first, the literature is scarce (in italian or about italy there is not any academic ethnographic account. nothing recent exists (but see ricci and salierno , for a very critical and politically biased account). the international literature is the product of research conducted in very different cultures, geographies and penal contexts that do not easily resonate with one another. secondly, there is simply not enough literature on the prison officers use-of- force (but see: kauffman ; marquart ; sim ; and crewe ). it is therefore indispensable to consider, on the one side, the sociological literature on violence as such (infra, chapter ), and on the other, to take the literature on the police-use-of-force into account (see terrill for updated references). thirdly, using policing literature studying prison officers is problematic because policing the street is very different than policing a prison’s wing. alison liebling argued for 'the relevance of the policing literature to the work of prison officers' (liebling : ). liebling justified the opportunity of adopting policing literature as a framework to study prison officers; yet, she pointed out three crucial differences between prison and police officers work that need to be taken into account. she argued that, [f]irst, prison officers have (more) continuing contact with their charges. as a result, they form relationships, of varying types and degrees, and often deploy their authority through these relationships. these questions, of rule following, the use of formal disciplinary and informal sanctions, and the use of authority– particularly through or alongside relationships– are critical to the shape of prison life. second, prison officers are (formally) more visible to their line managers [than police officer] (so that the extent of oversight over their work is broadly speaking more a matter of management choice). third, the formal legal power they have over prisoners’ lives is arguably greater since prisoners are no longer free citizens ( ). focusing on the prison officers’ use-of-force, however, a fourth crucial difference is the crucial dimension of the secrecy of prison work (cohen and taylor ; sim ); in particular concerning officers’ use-of-force. secrecy, and the lack of public visibility are still one of the core characteristics of prison officers’ work in italy. reading the literature, though, the situation does not seem to be different elsewhere. the total absence of ethnography of the officer’s use-of-force is a clear demonstration of it (see drake ). on officers’ discretion in the policing literature there has long been a debate on the ‘discretion of law enforcement’ (see: liebling ) that originated around the s by joseph goldstein paper ‘police discretion not to invoke the criminal process: low visibility decision in the administration of justice’ ( ). bittner ( ) considered discretion a structural component of police officers’ work. he argued clearly that ‘criminal law enforcement is in practice conditional, even though it is commonly regarded as unconditional’ bittner ( : ). he explained this position clearly by arguing that, [i]t is well known that police officers do not invoke the law mechanically…in addition, officers are expected to consider some general policy interests in deciding whether or not to invoke the law…the extent to which discretionary latitude exists and is regarded as legitimate and desirable varies considerably with the type of crime and he type of suspect’ (bittner : ). when this police discretion became largely acknowledged ‘people have worried about the extent of discretion and urged that it be restricted by additional rules of procedures’ (bittner : ). the importance of discretion of prison officer’s work emerged from the outset of the prison studies and was clearly pointed out as early as in the classic prison publications of clemmer ( ) and sykes ( ) (see also, sykes and merton ). the custodians find themselves engaged in a constant struggle to achieve even the semblance of dominance. and the position of the custodial bureaucracy is further undermined by the bonds of friendship which spring up between the guard and his prisoner, by the practices of quid pro quo and long familiarity which serve to temper a strict enforcement of the rules (sykes : ; emphasis in the original). policing the wing has long been understood as characterised by discretion and compromises (crewe ). the centrality of discretion and the prison officers struggle to rule the wing is what is more surprising in old prison ethnographic accounts; it can be re-read following crewe via the well-known 'street level bureaucracy' (lipsky ). reading prison work from lipsky's perspective discretion can be considered a structural dimension that is necessarily needed to allow officer to cope with their working environment and flexibly follow the laws, regulations and procedures and to translate them into practice in a particular organization and institutional context while doing their job routinely. lipsky suggested that at a 'street level' the routine and logic may be based on local scripts and informal norms that may differ significantly from the institutional goals and means as intended at higher hierarchical level within the organization and beyond. similarly, prison officers should implement the prison functions (to rehabilitate, punish, deter, isolate and neutralise) while, concurrently, maintaining order and security. however, following kauffman ( ), ‘external pressure to pursue multiple goals are not necessarily felt for a classic discussion on prison formal-official and hidden functions see prison on trial (mathiesen ). from a critical perspective it constructed the most influential discussion on the issue. the function discussed and criticised in that book are: ) rehabilitation; ) general prevention; ) 'collective' or 'selective' incapacitation; ) individual deterrence as individual prevention. mathiesen then concludes the book presenting a more general discussion of justice and his own critique of prisons. within a prison at the level where officer and inmate interact ( ). discretional interpretations and common-sense are at the core of day-to-day interactions even in the most regulated and normative context as ethnomethodology have clearly demonstrated with garfinkel well-known 'breaching experiments' in which participants were invited to unpack the taken for granted in everyday encounters and small talks . discretion, a necessarily ingredient in officers' interpretations of day-to-day routines and orders could eventually not only lead to abuses and violence, but also be an instrument of reconciliation and negotiation. the well-known dilemma of custody and rehabilitation impinge on officers' day-to-day work. it is well expressed in asylum (but, see also tait ): [t]hose member of staff who are in continuous contacts with inmates may feel that they, too, are being set a contradictory task, having to coerce inmates into obedience while at the same time giving the impression that humane standards are being maintained and the rational goals of the institution realised. (goffman a: ; emphasis added). we now turn to the presentation to the set of 'tools of influence' used by officers to run the wing discretionary. in particular, returning to the quasi-forgotten test on the 'convict code' written by a leading ethnomethodologist lawrence wieder ( ) showed a very different approach on the commonsensical discursive use of the prisoner's code for purposefully means: something he described as 'telling the code'. the code used by participants, in other words was not considered as the outcome of a sociological analysis. on the contrary, the fact the conduct of residents had an orderly, coherent appearance was the ongoing, practical accomplishment of residents who interactionally provided staff with 'embedded instructions' for seeing the environment of the halfway house [the research site] from 'the standpoint of the residents' by ' telling the code ( ). on authority terrill ( ) argued, as we have introduced above, that the definition of use- of-force is contested, and that the theoretical bases of the studies of it are weak. in the next chapter the interactionist sociological approach will be outlined. here, other approaches both in sociology and criminology have been considered to grasp the normative interpretations of the use-of-force (from observation to quantitative analysis of official records); yet, the next short sections will mainly focus on ethnographies. however, in the background, also the game-theory-based sociological approaches of kaminski ( ) and gambetta ( ) and the contested stanford prison experiment (zimbardo ) will be taken into account. although the stanford experiment has been strongly challenged by those who do not consider social psychological experiments, in particular that one, sound, others, notwithstanding the more or less soundness of the method, suggested, that the stanford prison experiment is a strong remainder of the crucial role that both obedience in a chain of command, and the organizational constraints play in the dynamic of the use-of-force and even in bad-violence and torture within actual custodial institutions in which flesh and blood persons are kept in custody. following buffa ( a) , the stanford prison experiment should be taken into account carefully; despite being an experiment, in fact, buffa argues that many interesting issues that emerged in that experiment should not be underestimated dealing with 'real' actual prisons and prison interaction. pietro buffa ( a, b, and ) had served as prison governor in a large italian prison; now he is serving as a general manager at the department of the prison administration (the italian ‘equipollent’ of the uk prison service). he is one of the few who has written extensively and bluntly on governing prisons in italy and on prison problems and dilemma. authority and the prison officers authority is a well-known relevant concept in the social science. bosworth and carrabine ( : ) suggested that '[s]ome [inmates] may obey rules from fear' and then added that 'others might support them out of habit of loyalty' and that '[t]hey may even be obedient because they believe in the legitimacy of regulations in their own right' ( ). authority or legitimate power could be considered as one ingredient shaping the interaction ritual chains (collins ) and the relationships between the keepers and the kept in a ‘total institution’ (goffman a) on daily basis. authority is a legitimated power that produces a normative obligation to obey to a lawful order in those under its influence. terrill ( ) argued that it can be grasped as the opposite of coercion; coercion, in fact, according to terrill is the enforcement of obedience through a physical interaction whether or not the inmate complies spontaneously ( ) with an officer's lawful order. crewe ( ) distinguished between 'power that is taken-for-granted and power that is accepted as just or legitimated' ( ); those two types of power would work differently. the first one would be based on habit or ritual; the second one, on 'normative commitment' ( ). although in england and wales there is a growing attention about the issue of police legitimacy, and prison officers’ legitimacy (jackson et al. ) – and their authority – it worth bear in mind that using the concept of prison officers’ and police officers' authority can be challenging (goldstein ) for different reasons, particularly so in prison. although, agreeing with those who argue that 'total consensus' is very hard to achieve, ben crewe ( ) stated that 'authority in prison can be experienced as more or less legitimate' ( ); it is a also see sennett's authority ( ). it is necessary to note, though, that terrill ( ) considers coercion a synonym to the use-of-force; instead, kauffman's definition distinguishes between the two, specifying that coercion refers to the 'treat of sanction' ( : ) and not only to the use-of-force. question of degree of legitimacy rather than the overarching presence or absence of it. the same opinion is expressed by carrabine et al., who argued 'that there are variable conditions which render [authority] more or less likely that prisoners will accept, however conditionally, the authority of their custodians' ( : ). writing specifically on legitimacy in prisons, jackson et al. argued that: [a]pplied to correctional settings, legitimacy in the sense outlined in tyler’s work entails prisoners accepting prison authority and authorizing prison officials to dictate appropriate behaviour (irrespective of whether prisoners agree with the need for the specific behaviours and the rules which govern these behaviours). according to the procedural justice perspective this authorization springs most importantly from the fairness with which prisoners feel they are treated...in other words, prisoners who perceive the prison regime to be legitimate believe that the prison should have rules and that these rules should be followed (jackson et al. : ). in the italian prison context, it is difficult to follow jackson et al.'s ( ) perspective grounded on 'procedural justice' and the 'fairness with which prisoners feel they are treated' for two main reasons. firstly, the italian cultural approach to rules and regulation varies greatly within the country and, in general, i guess, it is hardly comparable with the anglo-saxon's one (which i suppose is more consistent on average); this might have some historical as well as cultural explanations that cannot be discussed here (and that would require a specific research agenda). secondly, in most italian custodial institutions the standards of living and working are quite poor indeed; they have even been contested by the european court of human rights (hudoc ) time and again. despite the public institutional efforts to challenge the difficult situation using the scarce resources available, many abolitionist or politicians and some critical scholars only argue against the paradoxically 'unlawful', or ‘criminal’ italian prison system. i see the difficulties and i experienced with i discussed the issue with one of the authors when i was a visiting scholar at the centre of criminology at the university of oxford. ben bradford agreed that the concept was hard to be used comparatively; he added that he was aware that legitimacy was a concept that was likely to work better in some context than in others (personal communication). see: http://www.echr.coe.int/pages/home.aspx?p=home&c= ( - - ). my body and my psychological well-being what it means to work in such a condition, let alone to live within it (which is hardly graspable as researcher in my opinion); yet, having visited more than prisons around europe, i contest the picture of the catastrophic situation and keep on going studying it from within ethnographically to serve as a researcher and by doing so contributing to the analytical understanding of the phenomena at stake. however, following crewe's argument on the possibility to enhance or reduce the legitimacy of the prison in prisoner's opinions, it is useful to refer to prisons and the problem of order (sparks and bottoms ); it can give a more practical explanation as to what can be considered to produce a delegitimising effect, if not a legitimizing one. it is really pertinent with the discussion on the use-of-force that is the central aspect of the topic under examination in this manuscript. sparks and bottoms argue that: [e]very instance of brutality in prisons, every casual racist joke and demeaning remark, every ignored petition, every unwarranted bureaucratic delay, every inedible meal, every arbitrary decision to segregate or transfer without giving clear and unfounded reasons, every petty miscarriage of justice, every futile and inactive period of time – is delegitimizing ( ). that quote is a crucial lesson and should never be forgotten. neither by the officers, nor by the prisoners. at least, this is my normative opinion. during fieldwork another crucial problem regarding legitimacy in prisons emerged. it had already been illustrated by kauffman ( ) who argued that ‘[a]uthority failed the officers in their quest to control the prison in part because the behaviour officers sought to compel of inmates so often violated what inmates considered to be in their own self-interests’ ( ; emphasis the nationally well-known italian politician marco pannella has often argued publicly against the 'criminal italian prison system'. moreover, the italian previous president of the republic described italian prisons as inhuman and italian psychiatric asylum as lager. added). by obeying to officers' commands, then, inmates may sometimes risk not only their own self-esteem, their masculinity, their own face and reputation with others, but also their own safety or life as such. being too docile with officers might lead in some particular occasion to fellow inmates' retaliation, abuses and violence in return. in other words, inmate would not only obey the law for one's own personal will to do it, but also they would do it for rational, emotional or ‘ritualistic’ (in merton’s sense) reasons, or simply because there was no other choice available in the picture at any particular time. despite all difficulties using the idea of legitimacy, i agree with kauffman writing '[a]t each of the institutions studied here, most officers exercised authority over some aspects of inmates' lives' ( : ; emphasis in original). in fact, often 'inmates recognized the legitimacy of the officers' control in certain spheres and obeyed' ( : ); of course, this implies that inmates did not recognised officers legitimacy in other spheres. i also agree with her view when she writes that arguing that officers 'exercise no authority overstates the case' ( ; emphasis in original). however, despite these normative assumptions, in the following chapters the organization and the mechanism through which compliance is obtained are illustrated from an interactionist perspective considering the particular actual course of actions and interactions that had been observed throughout the ethnography. in the facilities (either in the asylum o.p.g., or the prison c.c.) i studied, officer were continuously obeyed most of the times without resistance by most of the kept; yet, often a few inmates strongly resisted orders and their behaviours and interactions sometime leaded to episodes that would be labelled critical (infra, chapter and ). although authority have often worked in a way or another, officers were also compelled to move beyond authority adopting different strategies to be obeyed and to rule the wing accordingly. in other words, officers could not simply presuppose inmate's cooperation on the ground of prisoners' intention to obey their own orders and, therefore, officers would know that it would be likely that they also had to adopt other tools of influence (as i called them) day in day out. tools of influence officers' authority is neither a sufficient ingredient, nor a sufficient 'tool' to deal with inmates and obtain or coerce compliance. therefore, other tools of influence are also used routinely inside. drawing on both the literature and the ethnographic practice a large bouquet of 'tools of influence' enter the picture. below, that bouquet is organized in a three by three table (tab . ). in what follows, however, only few tools will be addressed in more depth: they will either be those most frequently observed on the landing, or those that have more significantly influenced the academic debate on the power relationship and the use-of-force between the keepers and the kept. in that tables, different tools of influence are organized taking into account two main dimensions. vertically, they are organized in the three columns distinguishing the tools of influence between those clearly lawful, the ones clearly unlawful and yet others that are neither clearly lawful, nor clearly unlawful. terrill ( ) refers to the latter as the 'large grey area' in between. horizontally, each particular tool of influence is positioned according to their i am not referring to power generically here: i am referring instead to specific tools officers (and in turn prisoners) might use to pursue a particular goal in a given situation. i used this expression thinking about the idea of the toolbox. i slightly changed kauffman's 'means of influence' ( ). crewe ( ) wrote more broadly about 'elementary forms of social power'. level of coerciveness: in the higher row of the table there are the non-coercive tools; in the second row, there are the verbally (or symbolically) coercive tools of influence, and in the last row, the physically coercive ones. lawful grey area unlawful non-coercive negotiation, rewards, persuasion, inducement manipulation manipulation with false and incorrect use of information verbally-coercive verbally-coercive enforcement of a lawful order; threat of sanctions lawfully enforceable with uof verbally-coercive enforcement of an ambiguously lawful order verbal-abuse, yelling, joking, verbally discriminating, provoking physically- coercive physical use of minimum force for the shorter period of time if and when strictly necessary use-of-force, pushing, restraining, locking in and/or retarding unlocking of the cells for no clear reasons use-of-force if clearly non necessary; overuse of force; violence; torture table . tools of influence (a normative table) (design: luigi gariglio) describing the distinct characteristics of working with [or warehousing as goffman suggested] prisoners, goffman put it clearly, arguing that: by the exercise of threat, rewards and persuasion, human objects [meaning, the prisoners] can be given instructions and relied upon to carry them out on their own. the span of time during which these objects can be trusted to carry out planned actions without supervision will of course vary a great deal […]. only the most complicated electronic equipment shares this capacity (goffman a: ). in the next sections a few criminological and sociological interpretations of some of these tools will be addressed. kauffman ( ) did it slightly differently in her chapter 'power in prison' ( – ) more than twenty-five years ago; yet her framework on the issue of 'means of influence' ( ) are still crucial today and have been very influential on some of the ideas that will be discussed in the next sections of this chapter . lawful-non-coercive tools of influence: negotiating through persuasion and inducement the inmate’s will to obey does not always necessarily produce inmate’s cooperation on the ground of officer's authority; the officer’s toolkit have therefore to include other means, or tools of influence, by which strategically interact and negotiate with inmates on daily basis. following sykes ( ), [c]oercive tactics may have some utility in checking blatant disobedience – if only a few man disobey. but if the great mass of criminal [sic] are to be brought into the habit of conformity, it must be on other grounds ( ). crewe ( : – ) recently reinterpreted the issue at the light of the new literature; his discussion is also really stimulating; particularly so, his idea of 'soft power' (crewe ). however, my ethnographic observations conducted within an interactionist sociological perspective (collins , ; athens , ) resonates particularly well with kauffman's interpretations and with her focus on the use-of-force and violence which is almost missing in crewe’s book. the first two means that officers can adopt to gain prisoners’ cooperation lawfully on the wing during the day-to-day interaction ritual chains (collins ) are ) persuasion, and ) inducement . neither the first, nor the latter use physical coercion or the threat of it, necessarily. they are both based – at least the interpretation proposed here – on the human capacity of (rational) reasoning , emotion management (hochschild ; ), and, following crewe ( ) 'habit, ritual or fatalistic resignation' ( ; emphasis in original). persuasion, and inducement have frequently been sufficient to pursue a possible accord to a dispute in a way or another during the ethnographic observation. different forms of negotiation are usually the most common way to deal with a dispute among different actors with the intention to reach a compromise both at an international political relation level and at day-to-day encounters level between human beings not in custody. in prison, negotiations are frequently at stake as well . in prison, the power dynamic is constituted and reconstituted within a particularly unequal distribution of power and resources among the keeper and the kept; yet, the outcome of any dispute between one or more officers and one or more prisoners is not always given and fixed. in that situation heading toward a pareto efficiency ought to guide the logic of the here the sociological interactionist position of the author is made explicit. in fact, the interactions between officers and inmates and not the problem of order (sparks ) is the topic here. following weber, rational actions are of two main types: the first is based on a utilitarian perspective; the second, on the contrary, is based on the motive of the action: the value embedded into it (a typical example is someone risking one’s life to help a person or to defend his belief or opinion against all odds). both persuasion and inducement can be read in weberian terms. the literature on the negotiation is large; here we will only deal with the reinterpretations of negotiation used in prison sociology and criminology. in the next chapter, following (athens , ) we will refer to it as domination at a micro level of the day-to-day interaction. collins also refer to it yet differently (infra, chapter ). pareto efficiency, in fact, is a situation in which it is no possible to ameliorate the individual situation of any of the actors involved in the exchange (or interaction) without, at the same time, making any other actor worse off. it might be difficult and maybe way to abstract to negotiation between officer and prisoners, at least in a normative and rational perspective. in the field, officers valued and prioritized their own interests and prisoners' interests differently, and they were allowed de facto to work accordingly almost without any serious form of accountability regarding their own performance of their duties. putting it differently, prisoners' interests and rights, were not always automatically considered to be worth of any serious consideration: they were not considered just like any ‘free’ citizen, let alone prioritised. sometimes, the simple fact of listening to a prisoner's request was interpreted by officers and staff as very costly, unnecessary, or even unreasonable because [prisoners] always say the same things and do the same stupid questions: ‘do you have a cigarette?’ i just do not go anymore [when they call me]. when they really need your help you can get it straightforwardly from their tone of voice...you can't miss it (field note). therefore, the actual possibility of heading towards somewhere next to the pareto's point of maximum efficiency was in practice very limited indeed, if not purely utopian. pareto's approach still maintains a useful explicative potential to deal with situations in which both prisoners' and officers' position might be ameliorated by cooperating with one another, like in the contexts of prison work, prison schooling, and in some particular rehabilitative programs. when this happens persuasion can be a valid tool to move the interaction towards the officers' intended goal turning the situation, using rational choice’s vocabulary, to a win-win game. consider this concept as a valuable tool for grasping any sorts of prison interactions; yet, some interactions observed on the wing where unpredictably fitting into that model. in few particular occasions, in fact, an officer on duty did first try to pursue the inmate's interests against all odds 'working hard for the prisoner' s just cause' (field note) until his own situation was not risking to be jeopardised. in doing so those situations were heading towards a pareto's efficiency point, at least in our loose interpretation of it. in practice, however, most of the daily situations were significantly different from pareto theoretical model; social situation, in fact, can hardly ever be explain rigidly by adopting economic rational models (contra, kaminski ; gambetta ). however, in real day-to-day life, rationality is hardly ever the only factor at stake; sometimes it is almost absent. other factors influencing the interaction or the situation, more generally speaking, would include the following. firstly, the officers' and inmates' informal hierarchies (goffman a); then, the 'emotional labour' (hochschild ) required to deal with 'heavy situations and continuous requests;' next, 'officers' occupation moralities (scott ), and lastly the officers' reputational costs of showing a friendly face to inmates (goffman b, ). all these factors influence the situation in a way or another, making it more complicated that it might appear at first glance within a rational choice model (see, kaminski ). negotiation is often used on the landing in one form or the other; yet it does not always suffice in ending disputes or fights. the two principal forms of what we, here, call lawful negotiation are persuasion and inducement. negotiating by persuasion persuasion was a crucial tool of negotiation in the interactions between officers and prisoners in the field ; it is based on the idea of convincing the counterpart to accept an accord (often potentially clear to the persuader) over a certain state of affair through reasoning and rhetoric devices. this option is predicated on the recognition of 'the other'; it also requires the intention of the persuader to convince the other by discussing the issue thoroughly with one another. in practice the persuader's goal is persuading (or dissuading) the counterpart to follow or to leave a particular course of action, attitude or it is also discussed by kauffman ( : – ); crewe does not specifically addressed it in his 'elementary forms of social power in prison' ( – ) that he defines as: ) coercion; ) manipulation or inducement (we treat them separately here); ) habit, ritual and so on; lastly ) normative justification or commitment. conduct that has already been defined by the persuader either appropriate or inappropriate (kauffman : ); in our field work prisoners' actions of resistance, protests, and even fights between inmates (but not a prison officer's assault) were often prima facie dealt with by using persuasion in order to move the situation to a more desirable end; often, this would practically happen by a 'high' grade officer – higher than the wing manager usually ruling the wing (infra, chapter and chapter ) – entering the wing to 'have a talk' with the 'troublemaker' to calm the situation or to prevent another critical event from starting again. this would usually happen even before any critical event exploded. persuasion was a rhetorical device i have seen in action time and again; inside, it was just everyday routine. by ‘doing’ persuasion, the officer would frame the discussion in a collaborative way. an officer (or more than one) would try to convince one particular inmate (or a group of inmates) of doing something he was supposed to do, or to stop doing something forbidden or not anymore allowed. persuasion is a fare way of facing disputes (or crises) when the two parties have some formal degree of freedom to influence the outcome of the interaction in a way or another; yet, there is no real agreement among scholar on what persuasion in prison might look like. klockars ( ), writing on policing in the 'free' community, event extends the idea of persuasion to that of ‘coercive threats’ by arguing that: [a]n officer displaying a snarling police canine, pounding a baton […] or brandishing the electric arc of a stun gun during a confession is not an example of [the use of physical] force. they are coercive threats, a variety of persuasion' (klockars : ; emphasis added). in the 'cycle of the use-of-force and violence' it will be clear what often persuasion was simply the first tool used at the initial stage of the crisis; afterword, a more articulated sequence of tools of influence would enter into the picture over a short period of time if necessary one after the other or concurrently. accordingly, kauffman argued that in her field (at walpole), “persuasion” too often became a mere preamble to coercion where the threatened sanctions were under the officers' control. “i'd say, 'look, i'm putting the handcuffs on you. you may be bigger than me, but i am putting the handcuffs on you because i can get ten guys to help me but you can't get anybody to help you. so just let's put the handcuffs on and go.' and we'd go. nothing to it” ( : ; emphasis in the original). we would refer to those practice as the threat of the use-of-force, limiting, by doing so, the perimeter of the idea of persuasion to a verbal or symbolic dimension in which threats of coercion are not in the picture. persuasion – like other forms of negotiations – was not always compatible with the actual formal and informal cultures, value-systems and norms governing both officers and prisoners’ behaviour, patterns of interactions, and professional cultures in the prison setting under study. in order to persuade an inmate, in fact, a certain amount of time, privacy, and ‘familiarity’ between the officer and the inmate is needed to properly address the issue in a personal way and to interact and communicate with one another properly. in an institutional context in which, traditionally, the common type of interaction between the keeper and the kept is based on quick quasi- authoritarian order or authoritative (sometimes authoritarian) lawful request on the part of the officer (as well as seldom other less lawful behaviours or practices), a style of communication based on a slower, less powerfully biased communicative relationships could be problematic for the officers own reputation among his or her fellow colleagues, and therefore is rarely performed, and often resisted instead. however, persuasion would be a good mean for trying to ‘make prison more human’ (buffa ). on officers’ side, persuasion might be considered time consuming, too soft, and not masculine enough (sabo ; ricciardelli et al. ) to be adopted; yet, occasionally, mainly in the evening or night-shifts verbal interactions between keeper and kept were more likely to happen; in fact, officers in those occasions needed to 'do their own time,' were less busy performing their own proper duties and paperwork, and also needed to fight against boredom which was usually not considered a nice companion inside. normally, however, only very short verbal exchanges occurred between the keepers and the kept. it is still true, possibly to a less degree than in the past that longer dialogues through the bars might easily cause on both side suspicion and produce heavy unintended effects (kauffman ) such as violent retaliations and psychological harm. persuasion could be a humane way of dealing with disputes. however, in a prison environment, where the officers-inmates disputes’ outcome is normally almost given in advance and where 'you ain't do nothing for nothing', and 'you ain't be snitching' persuasion alone might appear to be an inefficient and/or simply too weak means to rule the wing properly. as argued by kauffman ( ), [w]hile many walpole [one of her research sites] officers could and did attempt to persuade inmates to do something by force or argument alone, the opportunities for reasoned communication that would have been essential for persuasion to become a major source of influence within that prison were lacking ( ; emphasis added). almost thirty years afterwards, those 'opportunities for reasoned communication' between the keeper and kept are still a rare resource and therefore persuasion can work only intermittently. although, persuasion could not be always working on the spot whenever a crises, or critical event, occurred and other means had to be used instead, it might well have worked in the aftermath of a crisis to try to find out new accommodations of the situation for the near future. in other words, persuasion could have been and have often been used as an ordinary tool to try to control and prevent the development of new crises to re-emerge in a never ending constitution and re-constitution of the 'cycle of the use-of-force and violence'; particularly so with 'non-problematic' prisoners. during my ethnography, i often observed superior officers going to the inmate’s cell for discussing what had happened before trying to persuade the prisoner, through reasoning, to adopt a new style of interaction for the future, thereby showing to the inmate the institutional willingness to end the conflictual relationships between the keepers and kept differently, as well as, concurrently granting the inmate with the institutional consideration of him as a human being deserving attention, and not only as a trouble-maker prisoner. whether or not this 'benevolence' i experienced was mainly the consequence of me being there (for almost one year and a half) is unclear to me; i would suggest that in many case it was genuine, at least to a certain extent. the two weak points of the interpretation of persuasion discussed here are that, first, it would mainly take into account reasoning and symbolic exchanges in a context of a dialogue which is not always available in practice; second, and persuasion would not directly address the actor's interests straightforwardly. the next tool of influence put the prisoners' interests at the centre of the interaction between the officers and the prisoners; by doing so the relationships becomes more instrumental and does not necessarily need a thoroughly open dialogue lasting a long time to operate efficiently. negotiation by inducement kauffman ( : ) described inducement as a style of interaction that takes the other into account as being also, or mainly, trying to pursue his or her own self-interests. with inducement, the art of negotiation is reinforced by particular exchanges; yet, not necessarily only economic ones. both economic and value based rationality – in weber's sense – are at stake. in a situation of 'prisonization' (sykes ) characterised by extreme deprivation and infantilization (goffman a), officers can induce an inmate into cooperation focussing on his or her own basic needs in different ways (kauffman ). the italian prison regime is de facto formally based on inducement by a set of formal norms – commonly adopted in other national prison systems as well (i.e. in u.k.) in a way or another. prison rules, in fact, prescribe the distribution of advantages and disadvantages as the (discretionary) institutional response to prisoners conducts, behaviours and interactions, thereby disciplining prisoners softly (crewe ). in so doing, through a regime based on ‘stick and carrots’ (in italian, bastone e carota) compliance is pursued and often temporarily gained through formal inducement. however, other forms of inducement are in the picture as well. in the ethnography, staff would use a simple act of offering a cigarette, or taking the inmate’s post downstairs trying, by so doing, to stop a patient or an inmate from acting-out or resisting to an order aggressively. however, informal inducement has its own drawback; many officers argued that by giving that cigarette in one particular occasion, might turn that request into a prisoners' habit, and slowly slowly, even to a prisoners’ right. therefore, some officers resisted adopting informal inducement, recurring to it only in exceptional circumstances. despite a large emphasis on discretion in the literature, following goffman ( a), it is necessary to consider that a few very formal 'old-styled' officers and medical staff working ‘by the book’ would prefer to enter into a fight with inmates rather than mediating with them taking into account their necessities and deprivations. they would prefer head on for a fight than offering a cigarette; that had never occurred during my observation, though. however, discretion (liebling ; crewe ) is of course in the picture doing inducement too. if we move away from the formal legal prescriptions and we enter into the day-to-day practice of flesh and blood persons on the landing, a new set of informal practical options are available to officers to induce prisoner to cooperate. those informal tools are the heart of prison work and its secret ‘nature’ (cohen and taylor ). said differently, informal management performed in discretionary ways necessarily characterizes any particular prison regime, as well as any other organization (lipsky ). although inducement and discretion have been highlighted from the beginning of prison research, and can be considered a crucial structural dimension of both 'governing prison' (diiulio ; buffa b) and staff-inmates interactions, following kauffman ( ), a few critical aspects of this practice have emerged which will be briefly outline below. first, ‘inducement is nearly always a double-edged sword: i get what i want in exchange for your getting what you want’ ( ); this exchange is said may lead to officers’ corruption. second, inmates may tend to easily take for granted – as if they were rights (as already stated above) – what they had been given once as a favour; old informal exchanges, moreover, might occasionally ‘be used as blackmail by inmates wishing to ensure that those rewards are granted repeatedly, in which case inmates end up controlling officers at least as much as officers are controlling inmates’ ( ). third, following the american scholar, an unequal distribution of privilege, in a context of very limited resources, might also lead to less order and security and not necessarily to the pursued goal. fourth, different ways of informally applying inducement – that is applying it in discretionary ways – may produce disputes among officers with different 'styles' of policing and attitudes toward prisoners. not only one officer might be seen with more favour than another by inmates because more 'generous' than his or her fellow colleague, but also this might push inmates to request service or favour from other officers because ‘others’ would always do it. one very relevant issue that i observed on the wing made this problem very visible; it was the distribution of 'free' cigarettes made available by the chaplain that – although organized efficiently and clearly ruled through visible procedures displayed in visible posters on the wing – was put in practice by different staff in very different ways inconsistently; that inconsistency in distributing cigarettes has often been one of the causes of inter-staff harsh conflicts as well as prisoners’ complains and requests. in reggio emilia prisoners’ situation was characterised by nothing less than deprivation, officers and staff had had often enough informal means to influence crisis positively, by either formal or informal inducement and/or persuasion. however, the symbolic display of 'the use-of-force and violence', or the credible threat of it in any particular situation would clearly help to reinforce the cooperation greatly and would moreover turn crises to an end. lawful coercive tools of influence: coercion as a rational, emotional and ritualistic action it is almost commonsensical writing that any custodial institution is based on coercion or in terrill’s terms ( ) on the use-of-force; most of the physical characteristic of those facilities both enforce and display coercion at the same time. coercion is therefore always at stake even if coercion do not always operate visibly (crewe : ) remaining implicitly in the picture (infra, chapter ). one relevant characteristic of custodial institutions – also called coercive institutions by coyle ( ) – is that they are materially, physically and architecturally (jewkes and johnston ; johnston ) designed, built and socially organized to discipline and punish (foucault ) the docile (and not so docile) bodies of the kept and to facilitate officers intervention whenever the legitimate use-of-force is needed to maintain order and security, to subdue prisoners' physical resistance (bosworth and carrabine ), and to prevent escape. following ben crewe, 'coercion is the bulwark of the penal institution, both in literal and figurative term' ( : ). not only the prison as such can be interpreted as a coercive institution, but also prison officers' work is intrinsically coercive. in fact, klockars argued that what defines police [and i would add law enforcement officers more generally, such as i.e. prison officers] is that we give them the very general right to use coercive force as they see the situations they attend to call for it' (klockars : ; emphasis added). klockars continues by arguing that officers 'are in this respect like other professionals (e.g. doctors) to whom we do special right to do things [...] that we permit no other people to do' ( ). particularly so – i would stress – regarding their soft and not-so-soft body-to-body interactions with inmates. coercion can be justified in different ways (see scott ). one particular justification is interesting here. it refers to a justification of coercion on the ground of the interest of those who are the target of the intervention. goffman ( a) put it clearly by arguing that: [i]n the case of any single inmate, the assurance that certain standards will be maintained in his own interests may require sacrifice of other standards; implied in this is a difficult weighting of ends. for example, if a suicidal inmate is to be kept alive, the staff may feel it necessary to keep him under constant surveillance or even tied to a chair in a small locked room. if a mental patient is to be kept from tearing at grossly irritated sores and repeating time and again a cycle of curing and disorder, ( ) the staff may feel it necessary to curtail the freedom of his hands. a patient who refuses to eat may have to be humiliated by forced feeding. if tb sanitaria are to be given an opportunity to recover, freedom of recreation must be curtailed ( ). although the majority of these tactic are not commonly allowed by law anymore in any italian institution, those practices are extreme examples of the ‘tool of influence’ – or coercive means – available on the landing. both a few keepers and few kept interviewed during the ethnography described similar kind of practices in their accounts referring to 'back then'. at the end what is a ‘prisoner’s room’? a small space (some say a cage) in which to coerce a body within a fixed space forcibly. despite other public functions, custodial institutions – such as prisons, forensic psychiatric hospitals or detention centres for immigrants (bosworth ) – are first of all and foremost coercive institutions built and organised to segregate prisoners from their own community and the broader 'non-captive society' for neutralising (and/or rehabilitating them). in those institution the actual use-of- force or the symbolic-credible-threat of it is a day-to-day routine. it is useful to note, following klockars ( ), that '[w]ith rare exception, the force used routinely and regularly by police [or prison officers] would constitute criminal offences were they done by persons who were not police […] acting in the lawful performance of his duty' ( - ). klockars quote expresses clearly something often taken for granted: the actual exceptional coercive capacity given to law enforcement agents by the law. within those custodial institutions coercion is always quickly available whenever needed or desired by those whose duty is also, some officers would say mainly, using force if necessary. prisoners, patients and migrants are locked in coercively and coercion is always 'in the air' ready to be enforced and re-enforced time and again for almost any possible reason by law (infra, chapter ). coercion has been defined by kauffman ( ) as a means to enforce the prisoners' obedience through 'the use of threat of sanctions' ( ); by doing so she distinguished it by the use-of-force . terrill argued that in the policing literature there is not any complete accord on the definition of coercion so far, nor is there any accord about the boundaries of coercion ( ). in fact, some scholars include within the boundaries of coercion the simple symbolic presence of an officer in a particular environment; others, instead, restrict coercion only to hard physical interactions. some do not distinguish between coercion and force, thereby implicitly considering coercion as something regarding also physical force; others, on the contrary try to single out each term more or less precisely (kauffman ; crewe ). in other words, there is no one overarching and uncontested definition of coercion in the literatures on policing and prison. more often than not, coercion is simply described as a list of coercive techniques (terrill ); yet, a body of literature who define coercion at a 'street level' do exist: one of the authors argued that coercion is 'a means of controlling the conducts of others through threats to harm' (muir : ). importantly, without specifying whether or not any conduct is lawful, muir’s definition just quoted above could be used indifferently either for prisoners’ ben crewe ( ), instead, pointed out that sanctions include: force, physical constraint and deprivation ( ). violence or for the use-of-force. this consideration is crucial here because, as i already made clear above, following other sociologists and adopting an interactionist approach i will treat the use-of-force as a particular kind of violence (collins ; athens ) trying, by doing so, to avoid as much as possible any moral judgement about the interaction at stake. in a forthcoming work, however, i will directly address the narration of the use-of-force and of 'bad' violence occurring inside i collected during the interviews. there, the different types of either denial, or self-accountabilities used by officers, inmates, and other staff describing those issues will be discussed taking seriously into account their ethical and moral implications as well as their epistemic nature of discursive ‘data’ rather than observational ‘data’ (infra, chapter ). coercion in practice: the use-of-force and physical restraint the use-of-force was defined very broadly by williams and westall ( : ) 'as any act or behaviour that compelled a person into submission'. operationally speaking, this definition encompassed the types of force included in the continuum' developed in above the law: police and the excessive use- of-force (skolnick and fyfe ). that definition spanned in a continuum including: ) the mere presence of uniformed officers [something similar to the idea of implicit or potential coercion discussed below (infra, chapter ); ) polite verbalization; ) strong verbal commands; ) firm grip; ) pain compliance techniques; ) impact techniques; ) use of less-than-lethal weapons; ) lastly, the use of deadly weapons. although skolnick and fyfe's approach, adapted to a prison context, clarifies the actual threats prisoners may perceive in any moment during their incarceration, it is operationally difficult to be applied because it does not help to distinguish in practice neither what the use-of-force is, nor what it is not. on the contrary (klockars ) proposed a narrower definition arguing that the use-of-force would be the application of physical strength for coercive purposes. it includes occasions when the use of that strength is multiplied or amplified by weapons [like batons]...”force” does not include verbal or nonverbal threats, pleadings, warnings, or commands, all of which are a wholly different order of sociological means of domination and control...in and of itself, force makes no such appeal [to the will of the person on whom force is applied], although the person on whom it is applied , as well as others , may reflect on its use and alter behaviour in response to it ( ). lastly, physical restraint is almost always concluding the officers’ use-of- force; yet this is not always the case. some psychotic patients could unpredictably ask to be tied to a bed to protect themselves from self-harming seriously or in order to be cured simply after using the persuasion tool or the display of symbolic threat of the use-of-force. usually, however, officer would need to use force to overcome a patient or an inmate acting out or resisting ‘violently’ and eventually would proceed to restrain the person either by hands or by mechanical means. although unlawful usage of tool of influence will not be discussed here thoroughly (contra, chapter ), before to conclude, another relevant, yet ethically and morally critical tool of influence will be described: manipulation. klockars ( ) does not distinguishes the use-of-force to coercion. staff distinguishes between person labelling them either psychopaths or psychotics and use those commonsensical discursive daily when speaking about them with each other (rhodes ). manipulation: a tool of influence in the 'grey area' between lawful practice and unlawful ones as goffman noted ( a), not only officers on duty perceive a structural conflict between custody and rehabilitation, but also, 'a further set of characteristic problems is found in the constant conflict between humane standards on one hand and institutional efficiency on the other’ ( ). the institutional constraints caused by the institutional efficiency or by any other institutional policies, or formal and informal goals, may suggest officers to use 'shortcuts' to arrive to the institutionally requested or personally desired outcome more quickly . one way of doing so is by using manipulative tactics. manipulation is an ethically and morally problematic tool potentially producing foreseeable unintended outcome. following collins ( ), [m]anipulation is possible precisely because ordinary life is an endless succession of situations that have to be acted out to be defined as social realities, and that constrain both actor and audience to take part in the work of keeping up the impression of reality (collins : ). manipulation is based on the differential power and knowledge between the actors in interaction ; it implies some form of cooperation (collins ). it is a quite problematic practice. if information was honestly and equally available to all parties, in fact, manipulation could not play a big role to pursue the desired outcome and, possibly, other tools of influence would be adopted instead. on the contrary, in an environment characterized by the strongly unequal distribution of resources, information, and power between the keeper and the kept, manipulation could and occasionally did work. this attitude could be understood using the concept of innovation, one of the five types of adaptation proposed by merton ( ). innovation takes place when any subject accept the cultural defined goals or values but rejects the structurally defined means to pursue them. it is now almost commonsensical to interpret the relation between power and knowledge following foucault. he notoriously argued, ober simplifying a very thick issue, that power constitute –and at the same time is constituted by – knowledge ( a, b). it would work particularly well with those inmates that move in and out the system through the ‘revolving doors.’ from a manipulative officer perspective, manipulation is a way for obtaining the desired outcome quickly, without 'loosing too much time' explicating the situation thoroughly times and again to the convicts, thereby (ab)using his or her own knowledge bias at his or her own advantage. more generally, manipulation is surely not a win-win game and its frequent adoption can be detrimental to the prison regime in general and to the officers- prisoners relationships in particular. in institutions such as prisons in which the interactions between the keepers and the kept are repeated and frequent (collins ), this tool of influence is producing – as a not intended consequence – disrespect and mistrust among all parties especially when officers are performing it frequently. notwithstanding, manipulation is a (useful) tactical tool that is often strategically adopted to quickly subdue inmates that are in the wing for a short and fixed period of time (and therefore have little contextual information at hand). moreover, from the staff’s standpoint, inmates with a high degree of volatility deserve 'little efforts' and would be treated accordingly. this is particularly problematic because, more often than not, volatile prisoners are likely to be defendants waiting for a trial and not yet convict and, therefore, would deserve particular regard and consideration. in practice, however, the exact contrary is true . ‘revolving doors’ is a commonly used expression referring to all those prisoners continuously entering and exiting within a few days the prison door. that expression was already used by kauffman ( : ). this is a crucial issue regarding justice as such and not only the criminal justice system. it is an issue that has long been both in the italian and international debate; yet, it cannot be addressed here. saying ' bullshit' it is an easy way to avoid the obstacle and overdue resistance with those who do not have a clue in here...there are many of them simply passing by for a couple of days. it does not make any sense to spend time with them talking about things thoroughly trying to explaining them all, if they will then leave in two days or so… and there is a quicker and at the same time more practical way to convince them to do it in the way you wish them to. i just mind my own business and manage crisis as possible every single time they occur (field note). manipulation was defined by kauffman ( ) as a tool of influence that 'involves getting someone to do as the manipulator wants by means of misleading or deceitful communication' ( ). i am not sure to agree with her point, when she argues that manipulation is typical of prisoners and less frequent among officers; yet, i agree that staff often described inmates as manipulative. in my experience, manipulation is a situational adjustment that could be used and was used by both party whenever it was considered to be convenient in a given situation or was presumed to be more efficient in reaching the desired outcome in the possible shorter period of time and without too much efforts; few persons on both sides of the bars, seemed to adopt manipulation also because they felt comfortable using it, it was their 'style' of communication, or at least it seemed so to me; they 'played' with it enjoying cheating with one another repeatedly. what became clear in the field is that whenever a prison officer’s interaction with an inmate-without-mental-problems was predictably going to last for a longer period, the officer would accordingly be less likely to convince the prisoner to do or refrain from doing something by using manipulation; in long term, in fact, manipulation does not seem to work properly for either of the parties involved. in fact, it isolates the manipulator from the non-manipulative peers and the counterparts, both of whom will avoid any interaction with the subject if allowed to do so (it is a quite predictable outcome, yet it showed to be quite true inside most of the times). in few occasions, being considered to be manipulative and therefore been left alone by the inmate was a good solution for those guards that were only interested in paying the mortgage as one said 'stilling the stipend and go home with the money to my family as [psychological] untouched as possible' (field note). in the field, staff would often describe inmates and patients as manipulative; they would say that prisoners would do whatsoever to pursue their own goals. seen from the other side, however, one might say that prisoners legitimate request were often not addressed seriously enough, nor in consistent ways (from prisoners' point of view); therefore, the only way prisoners might feel to be able to be heard would be by 'manipulating' the situation (i.e. simulating a crisis or a physical problems) or using force (i.e. completely destroying a cell, a wash basin, a tv and so on). some apparently irrational inmates' conducts, behaviours and interactions, in fact, could be better understood ethnographically trying to grasp the indirect consequence that had been pursued by a particular prisoner through a particular sequence of events rather than trying to comprehend the apparent sense of it sticking to what was visible on the spot. for instance, an inmate laying on the floor to get medical attention can be considered by officers as a manipulative inmate who is either asking for undeserved attention, or is unwilling to wait for his legitimate turn. from the opposite standpoint, it can be understood as a legitimate way to ask for help in a context in which all other 'normal' ways to see a doctor had been pursued but have not worked at all. on prison officer's side, a manipulative way of interacting would be provoking the inmate thereby 'producing' his reaction and starting a fight to gain – again manipulating the situation (with colleagues) – some personal advantage in terms of sick leave or special pension treatment cause by the alleged assault or to avoid boredom (field note and interview with a prison officer). in the custodial facility, manipulation was absolutely not a prevalent way of interaction between officers and prisoners; yet, i did observe manipulation in different occasions when staff were working with prisoners with acute mental health issues. in that case, however, manipulation may have served other ends, such as gratifying the patience or trying to relax him according to a medical or psychiatric prescription; yet, until now i have not yet paid enough attention in my analysis to the large amount of notes and interviews sections on these issue so far, to be able to unpack it further. some flaws of manipulation have already been described in the literature; a really relevant one would be that 'once unveiled, [manipulation] characteristically leads to the diminution in power' (kauffman : ) and a certain level of isolation. kauffman continues by saying: [e]ven their ability to use other forms of power suffered: their authority was eroded, their ability to persuade undermined, their offers of inducement suspected. moreover, each recourse to manipulation served to erode the credibility of officers as a group' ( ). it is the unintended outcome of a lasting negative effect on the officers' reputation that makes manipulation such a contested practice for those professional and serious officers that always prefer to avoid using it. before moving to chapter in which a sociological interactionist approach to the use-of-force in specific situation will be outlined, it is useful to remember, once again, that the boundaries of coercive and non-coercive tactics are fussy and not-clear-cut and that between lawful and unlawful practice exists a wide grey area (terrill ) and possibility of interpretation. the open thread or 'tacit warning' (infra, chapter and ) or other forms of symbolic communication about the possible adoption of physical coercive tactics might be an efficient tool giving the officer a possibility to rule the landing more softly (crewe ). illegitimate coercive tools of influence: bad apple or institutional violence? the issue of illegitimate coercive tools of influence is only sketchy introduced here and resonate with both the critical criminological literature as well as with some interviews i collected that will be developed elsewhere. however, some notes on the issue will follow. abuses of power happen within the routinized bureaucratic regime 'through distortion of policy and procedures: exaggerated suspicion, misuse of iep system, and other such acts, whose inequities cannot be easily discerned, let alone proved' (crewe : ). however, actual officer violence do occur within the prison secrecy (cohen and taylor ) in a situation of structural invisibility, cover-ups and uneven accountability (drake ). critical criminology suggests that often, whenever any wrongdoing became of public domain a scapegoat, or more than one, is likely to be (lightly) punished, thereby denying (cohen ) the structural dimension of the phenomenon (sim ). however, few italian prison service mangers did write on the issue straightforwardly showing a pragmatic and theoretically informed stance to address the issue straightforwardly (buffa a; ; pagano ). the problem is felt on the wing by officers too. one officer told me spontaneously: they sent us prisoners here to give them a lesson 'back then'; and sometimes, we were eager to do it indeed. almost all patients were immediately tied to a bed [in the forensic psychiatric hospital o.p.g.)], and they were often forgot there for days and days for no reason. using force [suddenly showing a very serious face] was our routine. please, luigi, write this, everybody knows it [here]. i do not mind, it can call me the director, it can call me the area manager, it can call me the president [of the italian republic]...it can even call me father christmas, ah, ah [smiling, as he often does]. i do not give a fuck! write this, i beg you, they told us to do it. they asked us to do so ‘back then’. they knew it and they all agreed with that. it was normal. if they call me let's see what they say... (field note). some other officer did introduce the issue of 'bad' officers' violence. even in a video recorded interview, one senior officer argued: the use-of-force is a routine here...yet, there is something i have never understood. i have never understood why prison officers are asked [by psychiatrists] to intervene whenever a patients starts to acting out. we are prepared and instructed to do something else. a long time ago i did a course to become a prison officer, a very short one lasting only three months. in those few months the only thing they taught me properly was to defend myself and beating others in combat with no pity. ok? my teacher told us that the better form of self-defence was to attack, then (laughing)...he taught us that very well indeed... because, you see, why should they [psychiatrists, doctors and nurses] call me whenever a mad goes berserk? i intervene to procure pain [in those occasions] not to cure the patient. i am not interested whether he is forced to gasp for air, banging his head [against the wall or the iron door], or whatsoever, i simply do not know what his problem is about. from my point of view, though, i just try to take him by the neck; in fact, i try to decelerate his breath, but i do not know what i should do. i simply learned by doing that whenever i take him by his neck he stops resisting. in my opinion nurses and doctors [and psychiatrists] should intervene! [and not us] ...if i enter [into a cell] i'll hurt him. i do not know why it has always been like this! when a mad starts acting out we [officers] become the luminaries (starting to laugh sardonically). i simply don't get it. why when the patients is acting out the doctor is not able anymore to cure him, and he calls us for help? fuck, i am suddenly better than a doctor then! i don't know why? are psychiatrists supposed to deal with calm patients only? […] if these psychiatrists worked outside [in the community] who the fuck were they going to call [when they need help]? (interview with a prison officer). (klockars : ) address the root of the problem. he argued that ‘[t]he enormous range of the legitimate authority of the police [and i would say prison officers] to use force is, of course, at the heart of the problem of defining and controlling the excessive and abusive use of it. in his section on "the question of violence" in medical powers in prisons, sim ( ) had reintroduce the issue of the body and the corporal punishment that is strongly related to the issue of imprisonment as such and to officers' misconducts or deviant behaviours. he did so by challenging one of the main thesis of discipline and punish. in fact he showed that, in the discussion of prison violence, it is important to read foucault critically; he specifically contested 'foucault's idea that with the rise of capitalism and professional expertise punishment moved from the body to the mind' (sim : ). he explained that, [a]t one level this conceptualization undoubtedly 'fits' with the emergence of psychiatric practice in europe and america. however, it misses an essential point, namely that physical violence and punishment of the body did not, and has not, disappeared but retains a central place in the repertoire of responses mobilised by the state inside prisons. autobiographical accounts by male and female prisoners from the mid-nineteenth century to the present...testify to the centrality of violence in the maintenance of order. recent account of the operation of the criminal justice system in general...further emphasized the importance of violence in state practice (sim : ) . sim continued his critiques of foucault writing that 'foucault over emphasized the nature of the shift in punishment that has taken place”; furthermore he has 'underestimate[d] the complex and continuous interrelationship between punishment of the body and control of the mind' (sim : ; see also collins ). one other critical authors even argued that '[s]ome member of the staff try to help prisoner when they can, but other are brutal and sadistic’ (sabo et al. : ) and a few pages before ‘[g]uards rule through the threat or application of violence’ (sabo et al. : ). drake ( ) new contribution in the palgrave handbook of prison ethnography unmasked some issued about alleged officers’ ‘bad’ violence inside uk maximum security prisons. to conclude this section it worth noting with zellick the unintended outcome that emerge from officers abusing the law. relevant italian episodes of both alleged police's and prison officers' violence are described in chiarelli ( ). whatever attitude one may have about crime and criminals it cannot be right that the law may be broken with impunity. that is why we sent person to prison in the first place. what kind of experience is imprisonment likely to be if those set in authority over prisoners express a contempt for the law and its processes different only in degree from the offences committed by those in their charge (graham zellick, quoted in scraton et al. : ). overcoming prison officers' minimum standards following klockars ( ) it could be argued that using minimum standards to judge the officers' work and misconducts is not a good procedure. considering officer with the professional status they deserve, in fact, adopting minimum standard to the use-of-force is not sufficient in the contemporary society. in fact, [w]e would not find the behaviour of a physician, lawyer, engineer, teacher, or any other professional acceptable merely because it was not criminal, civil liable, or scandalous and it is preposterous that we continue to do so for police [and prison officers] (klockars : ). in italy, it could be useful to think about what to do to challenge those 'inconvenient issues' (sim ) starting from some practical suggestion already given by klockars thirty years ago. following him (and others), in fact, any police agency, and the same may apply to any prison officer agency, committing to the minimum use-of-force should at least do the following: ) monitor the use-of-force [soundly]; ) educate the officer in its use; ) and 'evaluate the skill with which it is used' ( ). a fourth point that could be added is: to make officers knowable of their actual accountability, of the institutional intention to stop asking officers to use old methods and then 'to turn a blind eye' on the issue of the use-of-force thereby starting to legally charge any intentional wrongdoing and any cover ups thereafter. in the next chapter we will introduce the interactionist theoretical framework embedded in the ethnography. it will focus on observed actual thread and use- of-force. by doing so, the moral and ethical issues implied in the discussion we have just conducted in this chapter will be left on the background. however, this is not a way to deny responsibilities, or to turn a blind eye; on the contrary, trying to grasp what is happening on the wing on daily basis both observing and analysing the course of action inside may help not only to enhance the theoretical comprehension of some new aspect of the phenomena under study and on the broader field of the sociology of violence, but also, in turn, it might help shedding some light thereby producing some practical knowledge as to how to better address these issues in practice. chapter studying the prison officers' use-of-force and violence: an interactionist approach there is a growing body of wok focused on the crucial issue of power in prison both theoretically (carrabine ; adler and longhurst ; crewe ; ugelvik ) and/or exploring it ethnographically in custodial settings. the majority of these works (contra kaufman ; drake ; crewe ) 'alludes to, but does not explore the prison as a site for the exercise of disciplinary power' (rhode : ; quoted in crewe ); nor do they explore it as a site imbued in the practice of the use-of-force. in particular, there isn't any recent micro-sociological work focusing on a crucial prison officers' duty (contra goffman a), if any: the practice of the use-of-force as a response to a critical event within a sociological interactionist perspective. a few critical scholars – especially among critical criminologists – have righteously and loudly addressed and criticised officers' abuses and misconducts (cohen and taylor , ; sim , , ; scott ; tombs and whyte ; rhode ; ricci and salierno ; drake ). however, all those authors have not paid enough attention, if any at all, to the description of the course of actions and interactions that unfold at the micro level in the ordinary episodes in which the force is threatened and/or used in a particular time, space and geography. often, instead, many critical scholars have, addressed and fought against officer misconduct (ivkovich ), ‘institutional violence’ (sim ), and ‘public violence’ (gonnella b) either from within or without their capacity of political activists and/or abolitionists (see sim ; scott ). despite the intermittent considerable public attention on few critical episodes of the-use-of-force and some critical academic focus on the problematic sides of this officers’ duty, the day-to-day use-of-force has hardly ever been the focus of any recent prison ethnography (but see rhodes ; on isolation, coercion and mental health). usually, the lawful officer use-of-force is hidden from public scrutiny, let alone the unlawful use-of-force (cohen and taylor ). there might be some plausible explanations for it: the first reason might regard the researcher's constrains in particular regarding the custodial institutional setting and the research time-schedules. another reason, might be that ethnographers often operate in environments in which the use-of- force is hardly visible if not totally invisible to the researcher. yet, other two reasons might be that the use-of-force is taken for granted and that the source there are inter alia, a few old american macro sociological study of official documents on the use-of-force (griffin ). some italian critical episodes of death in custody are publicly well-known and have been largely debated on the media; for a (non-academic) description of some of those critical events see chiarelli ( , in italian). of research funding on the issue might be uneasily available (sim ). finally, very crucial indeed, is the point firstly made by sim about the researcher’s self-censorship (sim ; drake ) which always imping in any ethnographic practice and that is hardly ever pointed out openly by his fellow prison researcher. returning to the prison officers' duty of using force, and more generally to the officers' job on the landing, it is important to bear in mind that, in a prison setting, the job ‘at the street level’ is unsurprisingly seldom performed by the rules (goffman a; liebling ; crewe ; infra, chapter ). using force, like other duties, is de facto also performed with a very large degree of discretion; however this is very problematic and reinforce inequalities and unbalanced power-dynamics inside. it is quite unlikely that any prisoner in any circumstance will be treated equally independently to his own social position inside and outside the facility. the research questions adopting a micro-sociological approach based on interactionism, this ethnography is compelled to start addressing, or unpacking, using force straightforwardly. in order to do so, it will investigate empirically with particular attention a few dimensions of those set of practices at stake when threatening or actually using force with prisoners. the main questions would be: what do actually happen in practice when any prison officer (or a few of them) either threats or uses force with flesh-and- blood persons kept in custody? in other words, what routines do officer use to 'do' coercion in day-to day activities? (infra, chapter ). moreover, how does the use-of-force (either the threat or the actual use of it) unfolds in practice? are there any relevant stages that can be outlined? are there any turning point? how does prison officer discretion work on the implementation of coercion? lastly, what about the emotional context of those situations and interaction? (collins ; athens )? what about, then, the emotional management – the 'emotion work', and the 'emotional labour’? (hochschild , ). this micro-sociological research intends to shed some light on some issues raised above on these routinary practices of using force lived and observed by the ethnographer, the keepers and the kept (infra, chapter ); by doing so, it attempt to overcome the commonly polished discourses about it, so frequently reduced to the quantitative statistical discussion on official data reporting critical events (griffin ), prison officers' burnout and stress (pasquali ), and officers’ misconducts or alleged crimes. putting coercion at the centre of the ethnography was not originally planned (infra, chapter ); yet, being imbued for a long time within an empirical context in which both officers were openly threatening – or exerting – the use- of-force to the prisoners. prison officers using force eventually became the main focus of this work (infra, chapter ): in particular, the focus is here on the dynamic interactions between prison officers and inmates during emergency interventions following one critical event or another. another research outcome, related to the previous one, that will not be developed in this work thoroughly is the issue of officers’ and inmates’ narration of the use-of- force and ‘bad’ violence that emerged discursively during the participants’ interviews; those discourses about officers’ violence are seldom found in the recent mainstream sociological or criminological sanitized literature; however, see 'managing prisoners, managing emotion: the dynamic of age, culture and identity’ (crawley ); yet, its focus is very different. all this interactional sociologists have long been working on violence; none of them have addresses the officers' use-of-force; yet, collins have addressed the issue of prison bullying. following terrill ( ), coercion and the use-of-force will be used as a synonymous here. here, attributing to the word violence its commonsensical morally negative meaning. they spontaneously started to emerge during the photo-elicitation interviews conducted ethnographically after more than a year in the field (infra, appendix); occasionally, however, few quotes from those interviews will also be reported here. more in general, that interview process and the formal dialogues that took place helped in different ways to interpret the observations collected on the field. the critical discourses of violence were usually referring to ‘back then’ and were imbued in different rhetoric discourses that ranged from self- confession to different kinds of denial (cohen ), claiming and re-claiming often implying an implicit unaccountability or a reduced accountability of one’s behaviour related in different forms to the process of bureaucratization explained by pratt ( : – ). a process in which the individual responsibility is diluted into the complexity of the bureaucratic machine, its organization and chain of command. the prison officers ways of using force and the prisoners' way of using violence (as the one and the other violent behaviours are usually normatively labelled in the literature), as well as the particular uses that the ones or the others made of violence both physically and discursively, are really crucial to unpack the core of the custodial institutional regime observed in the field and the strongly asymmetrical power relations embedded in the interactions between the keeper and the kept; the power dynamic inside, in fact imply a particularly visible division between those who performed a superordinate role (who have the keys and the lawful duty to use force if encountering a prisoner resisting a lawful order), and the others, who performed the subordinated ones (that are locked-up in their cells and must respect the rules that can be enforced physically by officer as last resort) and are hardly ever allowed to use force . there has long been a large interest in the underdog of the prison system, the prisoner's capacity of doing resistance and to cope with the traumatic experience of both incarceration and detention. it is surely important to stress the prisoners’ agency and capacity of resistance that has been the mainstream discourse in prison sociology avoiding, by doing so, to reduce those persons to dominated-vulnerable-docile subjects (which in fact some of them are). this prospective has been developed thoroughly at least since the best-seller academic research asylum (goffman a) to arrive to the recent ethnography conducted in norway by ugelvik ( ) in which he introduces his idea of prisoners 'doing freedom' explaining that it might well contribute also to the study of liberty as such. despite the great interest of those accounts on resistance and the necessity to continue studying resistance in many more geographical context and from different theoretical perspectives that has had occurred so far, such as those in the palgrave handbook of prison ethnography (drake a), this ethnography focuses on something completely different. this ethnography focus on the mechanism of violence that is embedded and implicitly continuously operate in, and structures, the relationships between the keepers and the kept constraining also those inmates trying to ‘doing freedom’. it is an attempt to study what a critical criminology defined the ‘inconvenient criminological’ truth (sim ); yet, without embedding such an antagonistic political stand against prison officers or the coercive state apparatus. instead of adopting a political prison-abolitionist perspective, this ethnography will try to unpack how prison officers use-of-force occurs in practice in day-to-day situations by focussing on observed course of actions in which the threat and/or the actual use-of-force had occurred during or as a consequence of a so-called critical event, and in day-to-day routinary interactions on the wing. avoiding a normatively biased abolitionist position does not meant turning a blind eye to the problematic issues regarding prison officers using force. nor does it imply to be on the opposite side becoming necessarily an appreciative researchers. (infra, chapter ). the topic of this study: unpacking the interactions in which use-of-force and violence are in the picture in case of a so-called critical event before continuing, it is necessary remembering that in the light of the interactionist theoretical framework on violence adopted here (collins ; athens ), in this manuscript the officers' use-of-force will be treated as a particular type of violence and, furthermore, that the expressions use-of-force and violence will be used interchangeably without implying any moral judgement or connotation implicitly imbued in the commonsensical use of either the one or the other. in this fieldwork, the situations in which officers were using force (or violence, here used interchangeably) have been addressed empirically by the ethnographer staying side by side with officers, mainly on one wing, trying to comprehend their practices and, as far as possible, their particular subjective positions and standpoints. i did not adopt an appreciative enquiry approach to the study of prison officers as others have done before me; yet, my decision of staying with officers – yet not necessarily and uncritically on their side – influenced the ethnography indeed. in fact that decision made this ethnography firstly conceivable, then actually possible. displaying a different attitude, a very critical one, i would have hardly had gained any actual access to the use- of-force; yet, those are ex-post considerations (infra, chapter ). the focus of the ethnography was not limited to the action of any particular social actor as such; rather, it was on the sequence of interactions between two or more particular subjects within a particular emotional context (collins ) in one particular type of situation. i studied the ongoing situations in which prison officers' use-of-force (or violence) was occurring on the landing as a consequence of a so-called – or so labelled – critical event within a custodial environment. unpacking the dynamic structure and the different stages of the interaction has become the goal of this study. paraphrasing athens 'i will describe my theory of this interaction in terms of the stages that [the officers' use-of-force] acts unfold and nearly unfold' (athens : – ): i call it the ‘cycle of the use-of-force and violence'; yet i resist to call it a theory: until now this cycle provides a specification of collins theory of violence ( ) in a custodial setting and shed completely new light into prison sociology. i rather consider this thesis a first attempt to shed some light in an almost unexplored research field that affects the lives of some millions of persons around the world, either prisoners or custodial staff. in this research the use-of-force is defined as the typical sequence of interactions occurring between two actors characterised by a very asymmetrical power relation: one prison officer and one inmate with a particular social position in terms of gender, sexual preference, race and so on. the interaction usually starts as a consequence of a labelling process by which one particular occurrence (normally performed by a prisoner – or a group thereof) has been defined critical by a prison officer, and afterwards the situation has evolved accordingly. i will present a model explaining the stages of that routinary situation, here called the ‘cycle of the use-of-force and violence’ or the ‘cycle of doing coercion’. one prison and one forensic psychiatric hospital. writing on 'challenges, threats and fights' among prisoners gambetta also suggested ( : ) to 'identify a typical sequence'; however, he suggest it within a completely different research agenda keener on game theory than interactionism. in the next sections some ideas will be targeted. this research theoretical frameworks draws mainly from different versions of interactionism (collins , , ; weenink , ; goffman a; athens , , , ) and phenomenology (popitz ) agendas ; a few of those perspectives have been used ex ante while designing the research project, or doing ethnography; others, have been mainly considered ex post during the final stage of the analysis. has really punishment moved from the body to the mind? why to study the use-of-force inside? ‘foucault’s idea that with the rise of capitalism and professional expertise punishment moved from the body to the mind’ (sim : ) is almost become a commonsensical notion in the sociology of prison as previously said. this ethnography strongly contribute to resist that philosophical opinion by doing empirical research instead. both the observation in reggio emilia and the more than interviews conducted with staff and inmates (with or without adopting visual methods) – discussing about the issues of violence and coercion in reggio emilia and elsewhere clearly emerged that [p]hysical violence and punishment of the body did not, and has not, disappeared but retains a central place in the repertoire of responses mobilized by the state inside prison (sim : , see also ; ). drake ( ) has also recently disclosed her witnessing of violence during her ethnography in some maximum security prison in uk in the s ( ) that was previously hidden between the lines of her book. this distinctions are not as clear-cut as it might seem and are disputable. in this research the research phases have not been following a clear path. fieldwork, writing and analysis have been entangle with each other from the initial stage of the research and they are continuing until the end of writing; however, the fieldwork now is really limited to some contacts and a few encounters. the micro-sociological interactional framework any particular theoretical framework leads to a particular comprehension of the phenomenon under study. here, the theoretical framework adopted is grounded on the body of work of few sociologists that have recently put violence, and partly the use-of-force, under scrutiny (collins ; athens ; weenink , ). each of these approaches have its own theoretical agendas – fitting in different strands of the interactionist traditions; neither of them has been used by their author to focus on prison. developing my own approach, i had to extract them out from their authors’ discourses and references, thereby reinterpreting them in the light of my findings, subjective position, and epistemological position. furthermore i have restricted my focus more specifically on the use-of-force, rather than on violence. we now turn to the uneasy distinctions between legitimacy and lawfulness and, on the other side, the use-of-force and violence in recent literatures in sociology and criminology. legitimacy or lawfulness? in criminology, particularly in those mainstream scholars focussing on order and control (sparks et al. ; jackson et al. ; liebling et al. ; crewe ) the concept of legitimacy has been largely adopted to distinguish justifiable use-of-force and unjustifiable use-of-force. sparks ( ) authoritative and synthetic short definition of the issue reads: in general terms, the concept of legitimacy refers to the claim by people exercising power...to hold and use power in a justified way. it also concerns the question of whether less powerful people acknowledge those justifications and how they respond to the decisions made about for a short description of the issue refer to: king ( ). for a short description of the issue refer to: sparks ( ). them or to the condition imposed upon them. ( ). sparks continues stating that 'a number of authors have argued that this is of central relevance to the ways in which power is deployed, and order maintained or disrupted, in prisons' ( ). in sociology, radical interactionism have consistently used lawfulness instead; putting it really simply, with the risk of trivializing a complex issue, lawfulness would mainly refer to minimum legal standard, actual conducts, and actual interactions that can be observed on the ground. legitimacy, on the other, is imbued in discourses and opinions and it is more difficult to be observable in practice (usually, legitimacy is studied quantitatively by surveys). said otherwise, lawfulness would refer to the discretionary practice of law enforcement agency dealing with written norms in practice; legitimacy with the idea of justice and authority that are less easily observable. in contemporary criminology, the weberian idea of legitimacy and authority (also see sennett ; carrabine ) have usually been reinterpreted addressing the problem of order in prison; that strand of research have also grown considerably as a consequence of the series of disturbances and riots that exploded in uk in the s (carrabine ) that push the home office investigation and to the publication of the well-known woolf report (home office ). that was followed by a plethora of academic publications. following collins, however, '[t]he weberian definition [of power and legitimacy], imposing one's will against opposition, is not yet sufficiently micro-translated' ( : ). notwithstanding the highly influential contribution of the debate on the 'legitimacy deficit' and the prison officers' morale to the uk and international prison sociology (liebling ; sparks et al. ), the focus here will put legitimacy in the background. pushing legitimacy to the background is not only a theoretical decision, but also a practical one. moreover, it is nothing new both in critical, more marginal, literature (sim , , ) and within few mainstream authors (see: kaufman : – ). two further empirical reasons urged the author to adopt lawfulness instead of legitimacy. firstly – and this is a reason that adopt a typical ethnographic justification – officers normally would use 'lawfulness' to refer to the law in general and to particular norms when talking on the use-of-force and justifying their actions on the landing with one another and – even more frequently – with the researcher; moreover, neither the word “legitimacy”, nor other ideas loosely referring to it, had ever been used by any participants or interviewees to narrate their actions to one another (or to the researcher). secondly, using “the law” we refer to a specific set of norms and practices that are objectified, talked about, and that directly affects the officers’ situation on day-to-day basis. lastly, using the unique and practically forgotten ethnomethodological understanding of prison interactions constructed by wieder’s ( ) book , we might say that officers use those norms and laws 'to tell' their code and interaction to one another. the issue of the distinction between legitimacy and lawfulness is predictably even more complicated that what sketchy has been argued above. following sparks et al. ( : ; quoted in carrabine : ), in fact, it is also necessary to distinguish ‘“between the “taken-for-granted” and the “accepted- according to richard martin (university of oxford, personal communication) prison officers working in u.k. use the word legitimacy frequently. they are acquainted with prison sociology and the issue of order. in italy, instead base-grade officers are normally completely unaware of the prison literature. i want to thank giampietro gobo here; not only for sharing some chapter of his doing ethnography ( ), but specifically for indicating to me this brilliant book. a book which i have never found in any reference so far. as-legitimate””; this last distinction contributes to shed further nuance to the issue at stake. this ethnography, in fact, can re-confirm that the use-of-force and the power dynamic existing within the wall may be experienced as a 'matter of fact' that are simply experienced, accepted and contested as a reality as such by the actors 'without any reference to some version of legitimacy' (carrabine : ). this point clearly expressed by carrabine is indeed relevant here. on the field, both officers and prisoners have often referred to norms and to informal rules as if they were taking them for granted, independently from the concept of legitimacy and apparently also to their own idea of natural justice; officers were telling what they were doing – one another and to me – by stating in a seemingly un-reflexively fashion that they were often just applying the law ; yet, of course goffman's 'face management' was crucially at stake in those situations and in the narrations that emerged within, as well as the researcher’s effect (infra, chapter ). lawfulness and not legitimacy was used by participants on the landing ‘to tell’ the use-of-force. lawfulness will therefore be used here. on the landing, the penal code, the prison laws, the regulations, and so on were always in the picture and deeply influenced the situation; they had frequently been referred to – yet not always correctly – by officers talking with one another on the landing and especially so when talking with the ethnographer. laws norms and regulations framed the use-of-force in practice but also at a discursive and cultural level, in various ways (wieder ); the jurisprudence and its particular uses are far from neutral, and it is unnecessary remembering here moreover, following clegg and haugaard ( ), using legitimacy instead of “lawfulness” would not necessarily be a better option. any statement including the word “legitimate”, in fact, can be contested because it cannot be just an empirical statement. it [would be] an implicitly normatively evaluative statement, endorsing certain political arrangements. thus, while the concept of legitimacy is doing ostensibly empirical work – identifying institution [and practices] acceded to be legitimate – it [would be] simultaneously endorsing evaluative presupposition (clegg and haugaard : ). yet, a similar argument might well apply to lawfulness, though. that the ways in which laws, rules and regulations are constructed and used in one particular field are deeply political, that they embed a particular version of the system of domination, and that they are constituted and continuously re- constituted, challenged and resisted by interacting agents in any particular context characterised by a particular constantly slightly shifting power dynamics; in custodial institutions, however, a power dynamic exists within a strongly constraining formal distinction between superordinate staff and subordinate social actors; yet, it cannot be simply reduced to it. lawfulness in practice: ‘doing’ discretion taking lawfulness or legitimacy into account once again here, it worth remembering that prison officers' practices differ significantly from the normative laws, rules and regulation’s prescriptions and necessarily imply interpretations of the norms as well as the use of commonsensical knowledge, traditional action (in a weberian sense) and accommodations (as already remembered above). like in any other job at 'street-level bureaucracy', discretion is a practical tool by which the norms are interpreted and attuned to the particular situation. although discretion is necessarily in the picture, it can be used by officers for good and evil (yet, this imply a moral judgment). in prison sociology we can find normative description as well as moral partisan interpretations. western ( ) propose an optimistic interpretation by writing that “[i]n their wide discretion to apply force and enforce rules, guards also play a crucial role in keeping the peace” [is peace actually the right word?] (western : xii). one opposite interpretation stressed the possible 'dark side' of discretion that calls for check and balance and accountability procedures. abuses take place less often [therefore they do occur] through behaviour that steps outside the rules of the system ― for example, though physical brutality or deliberate psychological persecution […] instead, they occur within its bureaucratic folds, through distortion of policy and procedure: exaggerated suspicions, misuse of the iep [incentive and earn privilege] system, and other such acts, whose inequities cannot be easily discerned, let alone proved (crewe : ; emphasis added). a fine interpretation of the interactions occurring in prison between the keepers and the kept and the role that discretion necessarily plays in them is described by gilbert implicitly ( : ): [i]t is difficult to define what corrections officers do, let alone assess how well they have done it. nevertheless, it is clear that the direct work product that these officers produce is not security, control or safety but personal interactions between themselves and inmates. the affective nature of these interactions directly influences the level of tension between officers and inmates and indirectly influences the safety, security and control within the prison. discretion would be a very interesting subject as such; in the ethnographic field observed it was a crucial ingredient of the prisoner officers' job. they called it 'arrangiarsi': a kind of 'do-it-yourself as is possible in the situation'. however, as goffman argued officers use particular words ‘for denoting an inmates who demands treatment “by the book”’ (goffman a: ). it is worth noting following goffman, firstly, that some inmates resist discretion; secondly, that officer consider discretion normal and label those inmates who do not accept officers' definition accordingly. in an environment in which force is either threatened or exerted frequently, however, the issues of accountability, supervision and control should be crucially taken into account. it is so at a managerial level; yet, much less so on the ground. in fact, by using discretion without a clear process of accountability there is a great risk of discrimination, disparity, if not racism (liebling ). after all, 'the sociological realities of prison life and work […] are characterized by tradition, experience, accommodation, short-time horizons and daily survival' ( ). coercion and the use-of-force; just another form of violence? the distinction between coercion and the use-of-force is marked by controversy (terrill ). violence is also an uneasy and unclear term often charged with normative assumptions (ray ). in commonsensical day-to- day dialogues violence usually would refer to illegal or illegitimate acts perpetrating an evil. it is a fussy term deeply imbued with normative assumptions. however, violence, seen in a less normative framework encompass also institutional practices and institution, that either as a non- intended consequence or as an intended consequence imbue or are structured on the ground of the threat and the enforcement of violence (usually called force). custodial institutions are one among those extreme cases. distinguishing between violence and coercion is out of the scope of this section; yet, what is implicitly in the picture here is that in this ethnography a particular kind of violent interaction is at stake: a violent interaction in which both prison officers and prisoners threat or employ violence either symbolically or physically in order to solve a dispute between one another during or after a so-called critical event. in other words, this ethnography does not investigate why violence occurred and simply investigate how violent interactions unfold in the daily continuous interactions between the keepers and the kept. scholars adopting a micro-sociological perspective have not yet found a key to clearly distinguish between violence and the use-of-force (see also ray : – ) and have therefore tended to apply only one theory to deal with both violence and the use-of-force (collins ; athens ) leaving the task of building a clear distinction open to further research (athens ). following that tradition, here, i will pay a particular attention here to the chain of interactions in which one or more officers use force against one or more prisoners during or after a so called critical event. despite unavailable clear theoretical distinctions between violence and the use- of-force (terrill ) (infra, chapter ) and the micro-sociological tendency to interpret one or the other indistinctly, prison officers showed quite consistent ways of ‘telling their practices’ (wieder ) and prisoners' ones when talking about the use-of-force or violence on the landing. in fact, officers tended to adopt the expression use-of-force – that is by the way the legal name of it that is used in the legal norms – when ‘telling’ their interventions; they never adopted the use-of-force” describing a prisoner act even when it was quite clearly interpreted by their own standpoint as a prisoners' act of resistance: in the prison officers' interviews, prisoners were never described using force; they were always described using violence. using the official terminology in the official way might have been a prison officers' way of saving the face (goffman ), legitimating their own practice (spark et al. ), or showing their knowledge and professional attitude to the researcher. on the same token, officers have hardly ever used the word violence describing their own interventions; they occasionally did so in order to comment very negatively on a particular episode usually occurred ''on their side” in the past: particularly so, telling about gratuitous beating or completely unreasonable over use-of-force due to alcohol intoxication or other exogenous factors impinging in few (some would allegedly say more) officers performances that might be read, following collins, as particular hard versions of 'forward panic' here, i paraphrase wieder's expression ( ) telling the convict code by which the american ehnomethodologist re-framed the long standing discussion on the prisoners' code existing in the literature unpacking the ways in which prisoners use 'the code' inter-subjectively to create their social word. in that prospective the code is not a sociologist's discover but a lay etnomethod regularly adopted by prisoners interacting with one another to make sense of their world. although, this research is grounded in interactionism, it is also sensible to ethnomethodology as will be clear below in the presentation of the ethnomethod of “putting the gloves on”. i thank here giampietro gobo for recommending me telling the convict code. ( : – ) or even in rare occasions 'attacking the weak' ( : – ; see also buffa a). by doing so, one officer or another would only describe a few types of interactions – either performed by himself or by a fellow officer – clearly interpreting those interactions in moral terms as wrongdoing; yet, rarely explicitly using the word 'violence'. the ‘simple’ excessive use-of-force or the use of excessive force (terrill ) ‘clearly’ stated in the law would neither be considered as such to be a wrongdoing, nor a problematic type of interaction, automatically. they would be told with a negative connotation only when referring to interactions that have occurred with “normal-non- problematic-prisoner” that had been treated really unfairly for the sake of one (or more) prison officer’s own will, or ‘due to the situation’; a negative connotation would more probably arise describing a harmful intervention that leaded to heavy physical damaging of the prisoners body, his or her long term hospitalization or to an alleged fatality. once again, despite an agreed theoretical distinction between violence and the use-of-force is missing in the literature, to the best of my knowledge, not only a distinction was shared on the ground among officers, as it has just been shown above, but also a particularly recurrent – almost commonsensical – usage of the expressions violence and use-of-force was (and is) diffused both in public discourses (at least in italy) and in prison literature internationally ; in fact, in both arenas, the expression “the use-of-force” is usually adopted neutrally, or slightly positively, and refers to officers lawful actions; on the contrary, the expression violence is usually presenting a clear negative moral connotation and refers to a 'criminal' or prisoner’s unlawful behaviour or wrongdoing (see ray : – ). a clear example among many possible others can be found in the dictionary of prison and punishment (jewkes and bennett ). the following collins ( : ) we must remember that sorel proposes a similar, yet politically biased, distinction. sorel wrote that 'there is"force" used by dominant classes in a vindictive (and secretly terrified) upholding of their power; and there is "violence" of the rebellious under-class, with its clean moral purity, without viciousness but with the clarity of practical work' (sorel ). abstract of the entrance 'use-of-force (control and restraint)' ( – ) reads that '[f]orce may be used by prison staff as a last resort. it must be reasonable in the circumstances, necessary and proportionate' ( ). the entrance then starts as follows. when violence occurs in prisons, staff must be capable of intervening safely in order to bring the situation under control. under such circumstances, the prison rules states that 'an officer in dealing with a prisoner shall not use force unnecessarily and, when the application of force is necessary, no more force than is necessary shall be used (jewkes and bennett : ). in the previous quote is it clearly implied, yet not openly stated, violence refers to prisoners’ violence specifically. it implies that officers use force and inmates (might) use violence. this interpretation can be reinforced reading the two entrances in that dictionary that include the word violence: 'violence' ( – ) and 'violence reduction' ( ). in both dictionary' entrances only inmates are described acting as perpetrators. over two pages and a half, only the following phrase – yet, to be honest, a quite critical one – put prison officers in the picture as hypothetical perpetrators as well: '[p]rison typically exhibit a wide range of behaviours by which some prisoners are harmed by other prisoners or staff' (jewkes and bennett : ; emphasis added). in other words, in mainstream prison sociology and criminology, the term prison violence usually refers to prisoner-to-prisoner violence and to officers’ assaults (edgar et al. ; contra, kauffman ) and is hardly ever used to speak about lawful prison officers using force; in those literatures officers do not use violence, they use force (toch ; crewe ; ugelvik ). few critical scholars have challenged this interpretation of the word violence; writing about prison officers’ violence they have referred to prison officers’ wrongdoing, purposefully, denouncing misbehaviours, abuses and even torture (sim , ; edney ; marquart ). occasionally violence is used together with the adjective legitimate thereby producing the oxymoron “legitimate violence” (rebughini ). the fact that the expression legitimate violence is contradictory could be contested, though. that “oxymoron” rebughini refers to implies a commonsensical interpretation of that word which is not shared here. in fact, the word violence with no adjective might be also used to stress the similarity of the dynamic structure of the situations described by either expressions, thereby clarifying the fact that the difference between the two lies in the moral judgement embedded in one expression or the other from a particular standpoint. by suspending a normative value-driven judgment of the word violence, the dynamic structure of the interaction at a micro level can be described and, maybe, also explained by models that might relate with one another (collins ; athens ); either for [officers] use-of-force, or for [prisoners’] violence. despite the discussion on the differences and similarity between the expressions use-of-force and violence, in the light of the interactionist framework on violence adopted here, this ethnography will interpret officers' use-of-force as a particular type of violence (collins , ; athens ) – usually occurring both in completely lawful practices and in the grey area between completely lawful and clearly illegal officers’ practices (terrill ) – within a particular custodial regime. symbolic interactionism symbolic interactionism has a long tradition in the social science and has the merit to have put 'the act' and 'the interaction' at the centre of the sociological enterprise (blumer ; mead , ; goffman a, b; , ), differentiating itself on one side from theories that emphasised mental state within the actors' 'black box' or evolution, and, on the other, from theories, such as functionalism, that emphasised the role of the structure that would determine the behaviours of social actors and groups, thereby emphasising the relevance of what we now call agency and its complex relationship with structure (giddens ) . interactionism has the credit to take into account biology (hochschild ; collins, , ), which was at the centre of previous explanations of the interaction, ‘but adds [much] more points to social entry: social factors enter not simply before and after but interactively during the experience of emotion’ (hochschild : ; emphasis in the original). the term symbolic interactionism was coined by herbert blumer in who outlined the core ideas and concepts and would thereby put the foundation for a new discipline. he outlined three points: [ ] the first premise is that human being act toward things on the basis of the meaning that the things have for them. such things include everything that the human being may note in his word – physical object, such as trees or chairs; other human being […], categories of human being, such as friends or enemies; institutions, such as school or a government; guiding ideals such as individuals independence or honesty; activities of others, such as their commands and requests; and such situations as individual encounters in his daily life. [ ] the second premise is that the meaning of such things is derived from, or arises out of, the social interaction that one has with one’s fellows. [ ] the third premise is that these meanings are handled in, and modified through, an interpretative process used by the person in dealing with the things he encounters (blumer : ). blumer did not underplay the role of culture, norms, and roles; he considered them relevant insofar as they are imbued in the process of ‘interpretation and definition’ that give birth to ‘joint actions’ ( ). symbolic interactionism had also the credit to have introduced the role of emotions in the study of interactions. in this perspective, hochschild ( , , ), played a crucial role developing goffman’s interactionism to a new level. giddens is explicitly referred to in athens ( ) as well as in some prison sociologies (crewe ; see also spark et al. : – ); yet, collins does not explicitly refer to him at all. joint actions are defined ‘the lager collective form of action that is constituted by the fitting together of the lines of behaviour of the separate participants’ (blumer : ). they may be implemented by the interaction of only two persons or of by a huge amount of people. in his works, goffman developed, among others, two crucial ideas particularly relevant here; the first is face management, which was interpreted as a way actors used to build and present an acceptable face to one another on stage, the other is embarrassment. yet, goffman mainly dealt with the question of appearance, building an interpretative framework of the interactions based on a theatrical dramaturgy of day-to-day life. hochschild, instead stressed the importance of emotions and introduced the ideas, crucial here, of ‘anger boundaries’ ( : ). ‘anger boundaries’ address the ways in which a flight attendant would give the preferred answer to a client calling him or her with a wrong label, or even behaving rudely or violently ( – ). this attention to the strategic use of practical knowledge and of recurrent scripts is particularly relevant studying officers’ job. those symbolic or physically violent interactions she referred to in her book strongly resemble the interactions occurring on the landing between the keeper and the kept; yet, inside, at least on the landing at stake here they often show more extreme traits . both at the level of ‘emotion work’ – prisoners have to perform cognitive, bodily and expressive works – not only to ‘save their face’ as goffman would put it, but to actually survive their very condition; in fact, it worth remembering that self-harm and suicide occur much more frequently among inmates than the non-convicted population (liebling and maruna ); on the other side of the divide, officers should perform ‘emotional labour’ to help those in custody to cope with the situation, as well as simply to do their job. of course hochschild’s contribution extends far beyond and takes into accounts other forms of emotion management people perform during those interactions. however, despite the relevance of her potential contribution in prison on the one side, officers’ are often verbally (and sometimes physically) aggressed, on the other, both prisoners and officers use jokes and banters and at times even offensive label to call one another: prisoners would use the word ‘girachiavi’ (turnkeys) and, officers would occasionally use the term ‘camosci’ or other offensive words –even racist one like ‘kunta kinte’ or ‘balotelli’ to refer to a black prisoner. sociology, her perspectives has hardly ever been addressed so far (but see crawley ). another reason why hochschild contribution is particularly relevant here, is because she underlies the relevance of the ascribed social position of the participant on the ongoing interaction and on its possible outcomes. she used ‘sexes and social classes’ ( : ) as a heuristic device from the very beginning of her research; she also addressed the ways in which status might shield one person or another from poorer treatment (infra, chapter , ); her interpretation can therefore be used as a sensitise concept by which interpreting the prison officer’ position in relation to the ‘persons in law-status categories’ ( ): the prisoners and, among them, particular prisoners with particular position at the intersection of class, gender, race, religion and sexual preferences. symbolic interactionism, as well as ethnomethodology (collins : ), have played a crucial role in explaining the interactions that usually occur in day-to-day situations both within and beyond the wall. the book asylums: essays on the social situation of mental patients and other inmates (goffman a) is also one of the cornerstones of the sociological study of prison. goffman contribution to the comprehension of both face-to-face interactions ( b, ) and 'total institutions', and cannot be overestimated. particularly interesting are goffman well-known close examination to the the three main characteristics that seemed to be particularly relevant in this fieldwork and were used in practice to distinguish one prisoner to the others were: affiliation to an organised crime organization (varese ) or not, race (attributed to prisoners by guards) and mental health condition (again attributed by others, both medical staff and custodial one). although goffman is normally considered a symbolic interactionism he notoriously refused that label as well as the label ‘theorist’ preferring to be considered an ‘empiricist’ instead. prisoners' coping strategies in the 'underworld' ( a: – ), the ‘institutional ceremonies’ ( a: – ), as well as his early interest in the staff working practices and the staff-inmates interactions ( a: – ). however, neither goffman, nor his older colleagues have ever stressed the issue of domination as clearly as athens ( , ) has done. furthermore, none of them has addressed the micro-sociological analysis of the use-of- force . studying the use-of-force and violence: goffman’s legacies in interactionism introducing his theoretical perspective on interaction ritual chain, collins ( ) clearly expresses his legacy to erving goffman defining him ‘the founder of interaction ritual analysis’ (collins : ). he then explicitly referred to asylum (goffman a), interaction rituals ( ), and strategic interaction ( ) throughout his book time and again. goffman operates on a level of micro-detail that was unprecedented at his time, he helps point the way toward seeing just how the pressure for ritual conformity is felt, and thus allows us to turn his micro-functionalism into a mechanism of the micro-production of solidarities and realities (collins : – ). although, goffman is considered a functionalist in so far as he is interested in the interaction rituals’ role in maintaining ‘the moral order of society’ (collins : ), collins underlines that not only has goffman dealt with interactions as such, but also, he has introduced the notion – yet implicitly – of the interaction ritual chain, in particular with such rituals as stereotyped ritual goffman did address the officers’ use-of-force anecdotally; yet, he never really went into any detail. he argued i.e. ‘if a suicidal inmate is to be kept alive , the staff might feel it necessary to keep him under constant surveillance or even tied to a chair in a small locked room […] a patient who refuses to eat may have to be humiliated by forced feeding’ (goffman a: – ). verbal exchanges. in these ritual chains, in turn, goffman have emphasized the role of temporality (i.e. transition-markers), and bodily co-presence. moreover, addressing ending rituals such as salutation, he has made clear that by using salutations (goffman b) when living one particular encounter, the same ending encounter is already ritually prepared for a possible future reconstitution of another one thereby possibly forming a chain of encounters. in our research, it has clearly emerged, that transition-marker are more generally crucial allowing the constitution and re-constitutions of 'symbolic credible threaten' (infra, chapter ) of the use-of-force, that they are the core interaction-chain by which 'critical events are managed' routinely in the cycle. collins presents a few of goffman's reach vocabulary ‘in order to bring out the vast extensions possible of his rather condensed theoretical remarks on the topic’ (collins : ). collins added that, being interested in ordinary interaction, goffman studied extreme cases, such as the asylum, to ‘highlight [by contrast] the mechanism that produce the normal’ (collins : ); on the same token, ugelvik ( ) has recently attempted to study freedom by studying prisoners in a custodial setting. he then, concluded that ‘[l]ife follows routine rituals for the most part because it is easiest to do so, and full of difficulties if one tries to do something else’ (collins : ). it worth noting that in collins book violence ( ) no critiques on goffman's approach is outlined. radical interactionism turning now to radical interactionism ( , ), goffman’s legacy clearly emerges as well. athens particularly credit goffman for considering – yet only as antecedent factors – the role that 'gender, race, social class, and age' (athens we will see the emergency teem entering and exiting the wing as a transition-marker episode of the ‘cycle of the use-of-force and violence’. : ) played in the construction of violent interaction. however, athens position towards the author of interaction rituals (goffman ) is tainted with a larger degree of criticism arguing that goffman’s approach is based on consensus (athens ); yet, athens’ clearer critiques of goffman consensualism are mediated by his own comments on luckenbill ( ) interpretation of violence in which athens clearly pointed out that, [l]ike goffman ( ), luckenbill ( ) misidentifies the real issue that is being disputed during violent criminal acts. it is not whose character is the strongest but rather who is superior and thereby who should perform the superordinate and subordinate roles in a developing social act' (athens : – ). athens not only criticised goffman interpretation of what is at stake during the context, but also his understanding about the interaction as such. in fact, he stated that ‘[f]ollowing goffman’s ( ) [luckenbill] presumes that before violence can break out during face-to-face interactions, the participants must all agree to use physical force to resolve the issue of whose character is the strongest’ (athens : ). referring to my fieldwork observation, i agree with goffman that saving the face is a crucial issues; yet, i am not sure whether or not 'the participants in most violent criminal action do not mutually agree to use violence to settle their disputes (athens : ; emphasis added)’. on the landing the situation varied and depended on different factors. i do not see the reason why structures of domination would not permit the goffmanian process of 'saving the face' to enter the picture. in fact, structures of domination have constantly emerged during the fieldwork and the use-of-force would frequently be in the picture in a way or another . what i will call ‘symbolic credible threat’ (infra, chapter ) will result from a particular interpretation of both popitz’s discussion on ‘threatening and being extreemely serious form of ‘bad’ violence might work following a partially fifferent dynamic (see weenink ). on the field, however i have not observed such situation as alleged ‘lessons’. threatened’ ( : – ) and the idea of ‘credible commitment’ (campana and varese ). both those approaches would be likely to include concurrently issues of reputation, of ‘saving the face’, as well as, on the other side, of a system of domination. in the interactions at stake here, unsurprisingly, the officers' decision to threat or to use force would be, first of all, an officers' own decision and would not previously be agreed with prisoners necessarily; nevertheless, as popitz ( ) had shown prisoners, those being threatened by officers, had a crucial role ‘in the game’. the likelihood of an emergency squad’s intervention would depend, not only on the officers’ threats, but also on the ongoing chain of interaction between the former and the latter. despite the fact that officers would hardly ever admit, even less publicly display, that their decision is imbued in negotiation ‘with the enemy’, the observable evidence during field work would support that interpretation most of the time. in other words, it is reasonable to affirm that, more often than not, all parties have a stake in influencing the outcome of any conflictual situation in one or the other direction: either towards the actual use-of-force or towards de-escalation. however, officers' decision would be performed and displayed as if it would be an officer’s autonomous decision. however, a completely different picture would occur if a prisoner would unpredictably assault one officer. that prisoner’s behaviour would ‘cause’ a prompt officers intervention a predictably the intervention of the emergency squad as well. in some occasion this would allegedly configure a ‘lesson’ and not only a proper lawful intervention; accusation of alleged provocation are often performed by both officers’ and prisoners’ to one another. to conclude this section, interpreting popitz ( ), it is worth remembering the intersubjective and interactive relationships implied in each 'threatening structure' ( ) that is by and of itself a particular form of interaction. for a thread to occur, at least two social actors must interact with one another. during the interaction there is a shifting and ongoing power dynamic that depends on how any of the actors involved in the interaction participates interacting with one another. in fact, popitz argued that, not only the victim who is threatened depends on his or her interpretation of the perpetrator acts or threats, but also the perpetrator depends on –and become constrained by– the following decisions and actions of the victim ( ) . as it will be clearer below, the symbolic threaten of the use-of-force is a crucial process occurring within the cycle. i move now to illustrate few characteristics of radical interactionism that are interesting here. athens coined the term radical interactionism. he is the sociologist that has firstly published violent criminals acts and actors: a symbolic interactionist study ( ). later on, he has been started elaborating the ‘classical’ ideas of symbolic interactionism and, eventually, developed a slightly new theoretical approach that he called radical interactionism (athens ). the ‘radical’ difference between symbolic and radical interactionism is the importance that the latter gives to domination in constituting the interaction (athens ). writing about his theoretical legacies in a recent paper titled 'the roots of “radical interactionism”' ( ) he stressed the role of the philosopher g. h. mead explicitly pursuing the goal to move beyond his master and previous professor at the university of chicago (see also, athen ). mead has in fact constantly been athens’ main point of reference in his papers throughout his career; yet, his stance has become more critical over time ( , , , , and ). moreover, athens has the merit to have strongly re-evaluated the role that park and burgess played in the construction of symbolic interactionism. he argued that they had contributed in different perpetrator and victims are not terms used by popitz in that occasion; yet, in my understanding they can be used safely. two athens’ manuscriptes ( , ) are cited by collins in his violence ( ). ways; i.e. by both proposing four types of interactions, and by emphasising the role of dominance within each of them . athens showed park’s and burguess’ contribution by describing their explanation of dominance ( : – ): i will only sketchy list the main four points athens used to describe it ( ). dominance ) is always present in a cooperative interaction, or as they called it “corporate action”; ) it always implies super-ordination and subordination; ) it is imbued in varying degree in all kinds of interactions; ) it is taken for granted by social actors in interaction . all these points are particularly relevant in custodial contexts. athens have also continuously shown appreciation for mead’s lessons, not only because mead distinguished between five elementary ingredients of social acts, but also, and foremost, because he had distinguished between two types of social acts: conflictive social acts and cooperative social acts . during cooperative social acts the actor build or pursue a goal within the social action – a social object – and successfully plans his or her action accordingly. a conflictive interaction occurs if participants are in at least one of the following situations: they are unable to build a shared goal or to plan an appropriate action to try to reach it. (athens : ). see also collins reinterpretation in his chapters on 'confrontational tension' (collins – ) and 'forward panic' ( – ). the four types of interaction are ‘“competition,” “conflict,” “accommodation,” and “assimilation” […]’ (athens : ). he offers a different understanding of them by saying that ‘despite park and burgess’ ( : , , ) referring to competition, conflict, accommodation, and assimilation as “types” or “forms” of interaction, they can be more accurately characterized as the ongoing stages or sub-processes in a larger cyclical process’ ( ). 'dominance' is a concept he distinguished to his definition of 'domination'; his definition of domination is also different from the classic weber's one. athens argued that park’s influence on symbolic interactionism had been minimised by blumer who ‘performed the role of chief expositor of the interactionist’s perspective’ ( : ) after mead’s death. despite athens' appreciation of the two chicagoans, he has not appreciated that park and burgess centred each of their interpretation on conflict instead of domination the distinction conflictive social acts and cooperative social acts is often used by collins ( ) too. furthermore athens recognised that mead put domination in the picture studying social actions ( ); yet, with his evolutionary perspective on it, according to athen, mead argued that in his time, at that particular stage of social evolution, domination would only still be relevant for the polity; nor for all other five institutions as it was before; on the opposite, athens strongly argued domination is still nowadays the most relevant feature to be considered in the interaction (athens : ). in all prison context, yet to different degree, domination (or power unbalance) is a clear characteristic of the situation and deeply structure and influence the interactions between the keepers and the kept. mead had suggested that sociality became a better conceptual tool for explaining interactions than domination; in fact, sociality, through the idea of merit, would better explain the actors’ roles within the interaction and even one’s superordinate or subordinate roles performed in it ( ). that might also help to grasp the rationale imbued in the incentive and earned privilege (iep) scheme used in uk as well as, yet differently, in italy too. athens have strongly disagreed on this point with mead. he eventually concluded his critiques to mead by writing that, [b]y overlooking domination’s impact on all our societal institutions, mead and his students, such as herbert blumer ( , , ) and david miller ( a, b, ) failed to make it the basic principle on which all societies, past, present, and future, ultimately operate. ( : ). that was a very strong athens’ argument given the centrality he has given to domination in his own theory ( ) . mead’ six most relevant institutions are: ) language; ) the family; ) the economy; ) the religion; ) the polity; ) science. athens idea of domination as a central component of any social interaction is strongly in contrast with blumer’ idea of power. according to athen, in fact, blumer had not distinguished between power relation and power conflict thereby hiding, or denying, the crucial role of power in any kind of interactions. the most recent athens’ legacy is giddens. unlike collins who did never put him in his reference we considered ( , and ), athens refers explicitly to the constitution of society (giddens ) discussing domination. notwithstanding his 'radical' position, athens have not shown any particular interest in foucault’s idea of power other than in the edited collection of interviews power/knowledge ( b,c). giddens’ interpretation of power had surely had a greater impact on athens . athens, in fact, neither minimised the role of the structural variables, nor did he forgot the agent’s positionality in his research. his theoretical framework might allow researcher to take into account any vector of domination: class, gender, ethnicity and so forth. the link between athens' idea of domination clearly resonate with giddens, particularly when – in the section ‘change and power’ ( – ) – giddens stated that ‘power is the capacity to achieve outcomes […] power is not, as such, an obstacle to freedom or emancipation but is their very medium’ ( ); afterwards, he argued that ‘the existence of power presumes structures of domination whereby power that ‘flows smoothly’ in processes of social reproduction […] operates’ ( ). i now turn to the interactionist perspectives on violence. violent encounters athens and collins would probably both agree that ‘most existing explanations of violence fall into the category of background explanation: factors outside the situation that lead up to and cause the observed violence’ (collins : collins ( , and ) did not have any giddens’ work in his references. 'domination is not the same as ‘systematically distorted’ structures of signification because domination – as i conceive it – is the very condition of existence of coded of signification. ‘domination’ and ‘power’ cannot be though of only in terms of asymmetries of distribution but have to be recognised as inherent in social association (or, i would say, in human action as such). thus – and here we must also reckon with the implication of the writing of foucault – power is not an inherently noxious phenomenon, not just the capacity to ‘say no’' (giddens : – ). ) or, to put it differently, they would also both agree that ‘almost every imaginable explanation of violent crime has been proffered at one time or another (athens : ); moreover, that ‘the interaction […] is always a formative process in its own right’ ( – ), and that a theory must ‘explain what actually takes place during the interaction not only [when violent interactions] are committed but also when they are nearly committed’ ( ; emphasis in the original). both authors share a micro-sociological approach; yet, collins ( ) understanding of violence is grounded on a new version of what he had previously elaborate under the rubric of ‘emotional energy and the transient emotions’ (collins : – ) and is influenced by hochschild ( ); athens understanding of it is instead grounded on domination (athens ). the former argued that, [f]ighters get into a state of fear or at least high tension as soon as the confrontation comes to the point of violence. i will call this tension/fear; it is a collective interactional mood that characterizes the violent encounters on all sides, and that shapes the behaviour of all its participants in several typical ways (collins : – ). the latter claims instead that [i]n all its varied manifestations, violence is a by-product of the struggle for domination found throughout the social world. although all struggles for dominance do not give birth to violence, all violence is born from struggles for dominance (athens : ). i am not sure about athens clear-cut definition – or better manifesto – describing violence quoted above. treating violence slightly more commonsensical than 'neutrally', wieviorka contested the interactionist approach to violence – particularly referring to collins ( , ). he argued that: 'violence is sociologically the contrary of the conflictual relation. violence indicates rupture and not relation and violence involves the subjectivity of the person or persons who perpetuate it, much more than the inter-subjectivity of actors in relation and interaction' ( : ). to challenge an assertive definition such as the athens’ one above is an easy task. simply from a logical point of view it would be enough, in fact, to find one exception, and it is plenty of exceptions 'out there'. it would be enough to think about the crucial role that emotions play in violence (collins ), the issue of ‘emotional asymmetry’ (weenink : ), as well as other types of violence loosely related to domination, such as, i.e. violent encounters and assaults related to specific kind of mental health or alcohol and other substances intoxication to falsify it . however, athens contribution to the understanding of the violent interactions and his contribution to put domination into the picture cannot be overestimated. in particular his long paper violent encounters: violent engagements, skirmishes, and tiffs ( ) constructed one of the first useful tool to be adopted in interactional studies of violence, or, as collins recently called it the ‘micro-sociology of violence’ ( ). referring to mead distinction between cooperative and conflictive social actions athens stressed that in those situations, the individual or collective social actors involved do not agree on the power relations constituted in the interaction as to whether one or the other social actors should be in a super- ordinate position or not. athens argued that, ‘[u]nsurprisingly, violent encounters do not arise during individual or collective cooperative social acts but instead during conflictive ones’ ( : ); once again, a less assertive statement would help his interpretations to avoid to be easily falsified. during the ethnography in fact, violent interactions also exploded during day-to-day cooperatively activities. i am not implying that there cannot be a rationality or at least some form of purposeful actions in mental-health and alcohol intoxicated patients, i simply suppose that domination might not always be the main factor explaining those persons’ actions and interactions. furthermore, although mental health issues and drugs abuse have also been interpreted by scholars at the light of domination. i am not too sure about using concepts and proposing explanations in such an all-catching manner. nevertheless, athens contribution is crucial indeed. he proposed 'violent engagements: a five-stage process' (only occurring all five in the violent encounters) that he claimed could potentially be used with all violent social actions both lawful and unlawful once ( – ); either attempted or committed. athens also singled out the relevance of the quality and quantity of the social actors involved in the actual violent encounter; a question addresses in its multifaceted configuration by collins ( ) in his chapter ‘violence as dominance in emotional attention space’ ( – ) in which he addresses such different contexts as violence occurring during riots and ‘violence without audience’. athens’s five stages of violence: a partial truth to explain all violence? i am not quite sure whether or not one single theory might explain all forms of violence with a sufficient approximation; yet, i think that typologies and sequences of interactions are good ways to produce sociological knowledge. in this section, i will pinpoint one relevant contribution to study violence empirically at a micro level. all kind of violence, following athens ( ) might possibly occur in five stages, yet, the conditional tense is necessary. the first stage is ) 'role claiming'. at this initial stage, 'a would-be superordinate must decide to place himself into the role of the superordinate and cast someone else into the role of the subordinate' ( ). then ) 'role rejection'. during this stage, a 'would-be subordinates must not only decide whether to resist being placed into the subordinate role but also decide if they collins ( ) only referred to two old athens’ publications ( , ) and not to the recent ones ( , and ). he studied available visual materials from different sources and media; yet, his use of that material have apparently been conducted in a quasi-positivistic way; there are neither methodological, nor ethical issues raised at all; only rhetoric questions such as: ‘we might question whether there is a methodological bias in this photos. isn’t it possible that most of violent activists are out of the picture frame, somewhere else in the crowd?’ ( ). should resist actively or passively' ( ; emphasis in the original). the next stage is ) 'role sparring' […] if the would-be superordinate do not achieve their desired result [in the previous stages] then they can make additional gestures for this purpose, setting into motion dominance-claiming or rejection strategies' ( ). yet, another stage is ) 'role enforcement'; during this phase 'at least one of the two disputants must decide to use physical force to settle the issue of who should perform the superordinate and subordinate roles in the social act in which they are jointly participating' ( ). the last stage is ) 'role determination'. during the role-determination stage, the impact of the dominance engagement on the allocation of roles in the social act is determined'. there is no one single possible outcome 'to dominance engagements: a “major” or “minor victory,” a “major” or “minor defeat,” a “draw,” or “no decision”' ( ) . according to athens, these five stages do not all necessarily occur in each and every violent encounter ( ); yet, i think they might contribute explaining at least some officers' use-of-force as well. each time that all five stages are not completed within a violent interaction, again following athens ( ) the encounter is one of the two possible 'inchoate violent encounters': it would be a 'dominance tiffs' or a 'violent skirmishes'. the first would be a violent encounter that would not reach to the confrontation stage thereby role enforcement would not occur, thereby remaining at the level of threat (popitz ); the other would be an encounter in which, despite the confrontation had occurred, there would be no role determination. athens' approached will be expanded further focusing on a specific environment and type of situation. this will help both, to be much more 'in a major victory, one combatant scores a clear-cut win and in the process inflicts serious injuries upon the other one. a major defeat is simply the reverse. a minor victory or defeat is the same as a major one, except that no one is seriously injured. a “no decision” is where the engagement never progresses to the point that a “winner” or “loser” could be declared; it ends before any of the combatants could inflict serious injuries upon the other' (athens : ). precise, and to have a cycle that better approximate what actually occur in the wing on day-to-day basis; however, by doing so, the cycle will not pretend to explain all forms of violence, but simply to better grasp an often invisible custodial setting and the daily violent interaction continuously constituting and re-constituting it in a context characterised by the ethnographer’s presence on the scene. interactionism and the body collins, to the best of my knowledge is the sociologist who emphasised the role of the body in violence encounters more synthetically and eloquently by arguing that violence is, concurrently, a social process; a social process though strongly involving flesh-and-blood bodies (collins ). on the opposite wieviorka strongly contested the interactionist approach to violence by writing: 'violence indicates rupture and not relation and violence involves the subjectivity of the person or persons who perpetuate it, much more than the inter-subjectivity of actors in relation and interaction' ( : ). i do really appreciate both authors in different ways and i see that there are some partial truths in each position according to my observations. the main point is that, although both of them focus on the body, collins thinks about violence in general and focus his attention on the actual occurrence of violent face-to-face encounters, just like i tried to do here. wieviorka, on the contrary, adopts a less all-encompassing interpretation of violence referring to violence in a more commonsensical way and in so doing, emphasis the role of the wrongdoer or violence perpetrator embedding an explicit normative moral judgment that is out of scope here. here i want to thank explicitly roberta sassatelli for guiding me in this direction as well as for indicating me the relevance of wacquant ethnography on boxing to my research and for her brilliant insights on the issue in sassatelli ( ). in this ethnography i adopt an interactionist approach and therefore, this section will start once again with mead who already introduced the role of the body in his interpretation of the social act. following mead, it worth remembering that social act can either be cooperative, or conflictive’. both types of social acts are made of: ) roles; ) attitudes; ) language; ) attitudinal assumption; and ) social objects. it is worth noting that in athens' interpretation of mead, '[a]ttitudes are the physical and mental preparations that we undergo to carry out our particular roles in a social act. they also connect our bodies to our actions'. (mead , – ; emphasis in original and added). this original mead's interest in the body, reached a different level in successive interactionist scholars. the body was already there in hochschild ( ) 'feeling management'; she has been dealing with bodies in interaction in close proximity for the last thirty years ( ). in interactional ritual chain (collins ) the body played a crucial role as well: the intersubjectivity was constituted and re-constituted during the physical and social interaction among persons in proximity to one another; intersubjectivity was both embodied and performed bodily. this becomes particularly true in collins study of 'conflictual confrontation' and 'violence' ( ; ). violence is so difficult because it goes against our propensity to attune our nervous systems to those with whom we establish intersubjectivity. quite literally, persons in a conflictual situation, who are close enough to send and receive signals from each other’s face and body, feel the tension of simultaneously becoming highly attuned to each other, while trying to force the other to submit to one’s will. ( : ; emphasis added). the use-of-force – within the wall – is a deeply relational bodily activity in which intersubjectivity is strongly embedded in both symbolic and physic social encounters time and again. both collins' idea of 'confrontational tension and fear' ( : – , ) and athens’ interpretation of violent encounters ( ) argue that violence may influence and occasionally provoke bodily reactions like sweating, trembling, having a red face and even, collins notices writing about wars '[n]ot uncommon is loss of control of one's sphincters, urinating or shitting in one's pants' ( : ). this research strongly support it. in other words, particular bodies interact violently with one another in particular ways producing particular effects that afterwards may interfere with one's 'emotion work' and in particular with what goffman defined as 'saving the face'. however, here, athens interpretation of the body is the one that better resonate with our field work and with the 'cycle of the use-of-force and violence'. satisfying the impulses originating from our bodies, such as hunger, lust, warmth, and shelter, can be the ends of our action (mead : – ; also see blumer : – ; shibutani : – ). thus, our bodies not only are a resource for creating and maintaining our identities [like in messerschmidt’s view of masculinity] but can be the original, unadulterated ends of our actions, including actions whose sole end is usually neither the creation nor the maintenance of gender identities (see athens : – ; wiley : ). for example, people seek shelter from the cold to keep from freezing to death rather than to prove that they are a “man” or “woman” (athens : ). doing ethnography this interpretation is particularly keen. however, i think that ‘doing gender’ is crucial inside and cannot be dismissed. i saw prisoners fighting and breaking each other’s teeth on the yard ‘simply’ for refusing to share the last third of a cigarette, for having refused to follow a cue, and for pretending going back from the yard to the cell before the scheduled time thereby trying to urge others to lose their own precious exercise time in the yard. however, the interpretation of the word ‘simply’ should be contrasted with the reality of deep inequality and poverty lived by many prisoners inside. masculinities the crucial point, however, is not only limited to the bodies that can be observed by the researcher in the field. the researcher's own body in the relation to his or her observation is also crucial in prison sociology. in fact, studying violence within a closed environment in which the threat, or the actual, use-of-force is a typical trait of the situation, and both the researcher and the prison officer(s) are numerically largely outnumbered by prisoners, is a strongly bodily and emotional experience. my own quite tall and not too weak body was often seen a sign of my maleness and was commented on positively often with sexual second meanings joking on my alleged 'male performance out there' by officers and other staff, also female one. healthy – meaning strong – bodies are often performed and displayed both by officers and inmates. the 'muscular body' was a clearly shared code of masculinity between the (strong) keepers and the (strong) kept. officers showed their own body mainly through proxemics, being constrained by a uniform (and with no weapon at hand!); they did it more often than not when in interaction with female medical or custodial staff. inmates used proxemics as well, but they also exposed their own body literally through the selection of appropriate clothes some times of well-known sport brands. officers mainly displayed their masculinities mainly on the wing or in backstage situation outside the wing playing fight with one-another or joking with female nurses; inmates instead did it in the wing but, more intensely in the gym and during exercise (in the yard). weak bodies and disease were sometimes ridiculed and publicly 'othered'; yet, extremely weak bodies and explicitly disabled were usually treated more or less fairly most of the times. more often than not, in those extreme cases, such as a young inmate with no legs living on the wing, pity, empathy, and even a friendly smile were in the picture as well on both sides of the gate. according to ricciardelli et al. masculinities can take radically different forms in diverse environments. the existing literature on prison masculinities does not sufficiently capture the nuanced differences in how forms of gender are tempered and change within penal cultures and structures. ( : ). a gender prospective on masculinity is not new in prison sociology at all (newburn and stanko ; messerschmidt ; jewkes , ; aboim ; phillips and earle ; earle ) and it can be useful to study violence either in prison (sim ; toch ) or beyond the wall (messerschmidt ). it would be useful to incorporate the attention to masculinity more strongly in the sociological interactionist perspective on the use-of-force and on violence. both ideas of domination and dominance could resonate with connell and messerschmidt ( ) concept of 'hegemonic masculinity' and ‘hyper masculinity’ (toch ); however, collins have neither put any connell's, nor messerschmidt's work into his reference list and athens have even argued that '[t]he “doing gender” theory of […] has more weaknesses than strengths' ( : ). i do not quite agree with athens opinions about gender. i do agree instead that neither connell's, nor messerschmidt's, approaches have helped in identifying the stages though which a threatened, nearly completed or completed violet interactions unfolded during a violent interaction by the more or less active actions that all parties involved performed interactively with one another. in the 'cycle of the use-of-force and violence', different versions of hegemonic and non-hegemonic masculinities enter in the picture; yet, to be honest, this work does not focus on masculinity. despite my long-time interest in the issue, in fact, other dimensions played a more visible role in the field; furthermore, in italy masculinity and machismo are common male attribute either within or without prison. distinguishing between those different dimensions clearly would deserve a specific research agenda. masculinity will only be considered intermittently while describing the stages of the cycle here: yet, this research will only be a first attempt to doing so in italy and much more research is needed indeed. in such a hyper masculine environment failing to take into account masculinity completely would be difficult to justify. in the next chapter, we will move to the research site and enter the custodial institution. we will present the organization that implements in practice coercion on the wing by performing the cycle. we will first show bureaucratic formal organization of coercion in the reggio emilia' custodial complex. then, we will address the prison officers chain of command that emerged ethnographically on the field; next we will explore other informal dived that shape daily interactions inside; then we will introduce the emergency team. in other words, this chapter will allow the reader to better situate and understand the ways in which the cycle – that will be discussed in chapter and in chapter – is performed within organizational constraints that are characteristic of one particular total institution. by doing so it will also emerge clearly how the emergency interventions that will be unpacked here, might help others – in different context, space and prison regime – to begin to study those situations empirically, within a micro-sociological frame, allowing the issue to be treated also from a different perspective, than the normative one previously described in chapter one. chapter the organization of the use-of-force in practice: a 'street-level bureaucracy' within the wall in this chapter, i will illustrate the main characteristics of the organization of coercion, in particular at the wing level. i have studied it for more than one year and a half through observation, dialogues and interviews with staff and a few prisoners in order to shed light on the context of 'doing' coercion in practice and to unpack the chain of command through which coercion is exerted by prison officers onto prisoners; yet this work is not primarily focused on the organization as such; studying the organization is not its main goal and would require a specific research agenda; rather, this chapter simply intends to shed some light on both the social organization and the social actors working within the wall; particularly, focusing on those 'doing' coercion. the scope is therefore mainly to help the reader not 'to get lost' inside a secret world (cohen and taylor ) in which the cycle is recursively performed time and again. in the next sections, firstly, i will describe the bureaucratic organization of coercion by a way of describing the main roles in the officers’ relationships with one another. then, i will reconstruct prison officers' chain of command in reggio emilia. next, i will address three informal fractures that shaped to a greater or lesser degree that chain of command. the bureaucratic formal organization of coercion in the custodial complex in reggio emilia the custodial complex of reggio emilia, is one among the public italian penal custodial institutions. the italian ministry of justice has a department called d.a.p., 'department for the penitentiaries' administration' that specifically deals with detention in the realm of criminal justice. that department has eleven decentralised offices (provveditorati), each one managing one of the eleven areas in which the italian custodial-scape have been recently divided into; each of these areas is directed by one area manager (provveditore/trice) . at the moment a total of five forensic psychiatric hospitals, or asylum (o.p.g.) are still functioning despite the law (on december, the nd , the italian government issued a legislative decree n. / converted into law n. / that has ordered the closure of all italian ospedali psichiatrici giudiziari o.p.g.) that prescribed their definitive closure within a year from the publication of the law. only one asylum, castiglione delle stiviere, a forensic psychiatric hospital near mantova, in the north of italy, has been officially closed until now. in fact, it has been renamed as 'residency for the execution of the security measures', r.e.m.s., (residenze per l'esecuizone delle misure di sicurezza). before the law that ordered the institutional closure, they were ready to comply with the new normative. however, reggio emilia's staff considered the asylum ‘castiglione delle stivere’ an easy institution to be run. it was often referred to as a 'hotel' where only good prisoners and patients are locked up. this is probably not completely true; yet, in reggio emilia, i saw many 'difficult' patients arriving from the 'hotel' because they were considered to be too dangerous to be kept there. in italian, dipartimento dell' amministrazione penitenziaria. http://www.giustizia.it/giustizia/it/mg_ _ .wp. in italy there are no private penal custodial institutions. immigration detention (bosworth ) is an administrative task in italy, just like in uk, and it is therefore not included in the departmental duties. instead, the centres for the identification and expulsion (c.i.e .; centri di identificazione ed espulsione) are managed by local authorities (prefetti) under the italian home office (ministero dell’interno) and are often outsourced to private companies. the department for the penitentiaries' administration manages and directly administers all the italian custodial institutions for adults (and juveniles) in which approximately a professional group of almost . people, of whom about . women, work as prison officers managing and controlling a population of . inmates of whom . women . the custodial complex in reggio emilia (istituti penitenziari di reggio emilia) is one of the ten custodial institutions managed by the area manager based in bologna. that custodial complex hosts both a prison (c.c.) , and an asylum (o.p.g.) also called forensic psychiatric hospital in two exactly identical buildings designed and built to be a maximum security prison in the s (infra, image . ) and inaugurated in . article of law / . source: personal communication with a 'funzionario' of the ministry of justice; this data refers to december . data refer to th june ; source: ministry of justice.(http://www.giustizia.it/giustizia/it/mg_ _ .wp?selectednode= _ _ ). it's a remand prison for defendants (in italian, casa circondariale; c.c). in italian, ospedale psichiatrico giudiziario; o.p.g.. image . : aerial view of the site (source: https://maps.google.it/; graphic elaboration added by luigi gariglio). not only are the asylum and the prison identical in terms of architecture, interior design (jewkes and johnston ), furniture and even walls and bars' colours, they are also almost the same in terms of hierarchical organization, particularly so regarding the prison officers' chain of command (infra, image . and . ): the focus of this chapter. in fact, both institutions are directed by one prison governor (direttore or direttrice) who is a civil servant without any military or police professional training or expertise; they both have the same medical director (direttore or direttrice sanitario/a) providing health care to those in custody, and managing all issues regarding prisoners and patients' physical, psychological since the prisoners' health care is a duty of the ministry of health. before that, the ministry of justice employed or hired in different forms doctors, nurses and specialists providing a very bad health service to the population kept in custody. and mental health . image . the chain of command of the custodial complex (design: luigi gariglio). on medical power in u.k. see sim ( ). image . the three main actors of the chain of command. doing the 'cycle of the use-of- force and violence' in practice. the prison governor’s duties are divided into four main areas: bookkeeping (in italian, contabilità), prisoners' rehabilitation (in italian, trattamento), administration and, lastly, security (in italian, sicurezza) as the custodial complex's governor explained in a video recorded interview (see also faugeron ). the prison officers’ chain of command in reggio emilia the prison officers' (in italian: polizia penitenziaria) chain of command is structured in levels of authority . in the custodial complex of reggio emilia, the higher ranking officer was a commissioner (in italian, commissario or commissaria). during the ethnography she was the general commander and was only directly subordinated to the governor. being at the apex of the hierarchy, she directly commanded two police inspectors (in italian, ispettore or ispettrice) (third level in the italian prison officer hierarchy): one of whom would be the local commander of the prison; the other would be the local commander of the asylum. until recently ( ), the two institutions have been run completely independently of each other. a reorganization had occurred which formally unified the two previously independent organizations into one organizational body; yet some resistance still existed among staff, not only at the 'rank and file' level, but also at higher positions in the hierarchy throughout my entire fieldwork; in fact, i experienced a very low level of collaboration and sympathy among the staff working in one facility or in the other; the same kind of low level of collaboration had also been reported by staff during the interviews in both the prison and the asylum. the polizia peniteniaria' s personnel is divided in five levels: from 'ruolo agenti assistenti' to 'ruolo dirigenziale'; http://www.polizia-penitenziaria.it/le-insegne-di-qualifica.. during my observations there were very few superintended (second level officers (sovraintendenti) and inspectors (third grade) to manage all the crucial nodes in the organization or 'posto di servizio'; often, prison officers (first level) complained that they had a role in practice that did not match with the power position they held in the hierarchy, thereby performing roles with high responsibility– like managing recurring crisis– with nothing in return. the chains of command below each local commander were practically identical at the prison and at the asylum, as the woman commanding the whole custodial complex explained in a formal video-recorded interview. all those in the local chain of command were police officers and, from the top to the bottom of the hierarchy, were continuously potentially involved in threatening or using force if necessary; yet, doing coercion was particularly frequent at the asylum because, as the commander clearly stated in an interview, critical events were just 'a normal business' there. usually, critical events had been occurring more than ten times a day on the wing observed during the fieldwork; yet, only few of those episodes were officially labelled, or just treated, as such and put in the appropriate register of critical event accordingly. answering to an informal question in which the fact that so few critical episodes had been actually registered was challenged, an officer argued: if we scribbled on paper all the shit happening here... we'd never stop writing...and when would we start working then? all the prisoners…you see…are here because they gave problems somewhere else. we only have those kind of kids here…ok…let's put it like this. what is absolutely normal and acceptable for us here could be very critical somewhere else... you know what i mean? anyway, we must work in here...it's our job (field note: not recorded dialogue with an officer). predictably, however, the lower level ranks-and-files officers were more frequently doing coercion physically than the others. at the top of the chain, the general commander would rarely enter the wing and would consequently be less likely to be involved in day-to-day routines about 'doing' coercion; yet, she was the one who, as she proudly told me, 're-designed the service order regarding how to deal with critical events [managing critical events; service order n. / ( / / )]' and the rules, regulations and procedures that prison officers must follow in case of emergency (image . ). image . service order 'managing critical events' n. / ( / / ) (photograph: luigi gariglio). she was clearly proud of her job and doing her best to cope and to manage all the many difficulties and resistance she encountered in her daily interaction with 'her men'. despite the positive and enthusiastic approach, she was often described from the officers working on the wing, yet only informally, as a distant manager doing all her duty 'from her desk' and without 'boots on the ground'. initially, she had not given me any confidence and i also perceived her as a distant and cold manager; afterwards, she had been very open and friendly to me speaking quite openly both in the informal dialogues and in the two formal interviews in which she did not put on any politically-correct face, i.e. criticising the difficulty to work with the medical staff given the resistance she felt from their side. however, it became clear to me, doing observation on the landing, that she would pretend formal respect from subordinates and mark a clear distance between herself and those 'below' her. she had even stressed her managerial role and femininity during both video-recorded interviews by not wearing a uniform and being nicely made up and well-dressed for the occasion instead. the disciplinary hearing: ‘il comitato di disciplina’ notwithstanding both officers' perceptions and my initial observations have shown the commander’s 'absence' from the asylum day-to-day life, her formal role in dealing with all cases of alleged discipline occurring there was indisputable and had often, if not mainly to do with cases that eventually ended up in officers threatening or 'doing' coercion in a way or another. every time the prison governor would hear a case of alleged breach of discipline, the commander or her nominated deputy would sit next to the governor or his nominated deputy in a very formal setting inside the commander's office. the prisoner would be escorted to the room and the situation would be often described by prisoners (and by some low-ranking officer) as unfair and to a certain extent even intimidating. the accused prisoner has almost no way to defend himself from the accusation and hardly ever finds a fellow prisoner to testify in his favour. the accused prisoner would be at an obvious disadvantage. rank-and-file staff would be trusted the most. in other words, the situation of the hearing would seem quite intimidating and the results too predictable indeed to be fair. one step below the general commander, each one of the two local commanders would be at the head of his or her local chain of command, responding directly to his or her general commander and occasionally directly to the governor. despite an organizational difference at the wing level – that will be illustrated below – each of the two chains of command were very similar indeed to one another. below each commander, there would be a so called security manager (in italian, responsabile sicurezza) supervising all security aspects of his or her facility, an all-wings manager (in italian, capo-posto or preposto) who would organize and manage all the day-to-day routines occurring in all four wings of each facility, and who would continuously dialogue with other fellow officers working in other offices . lastly, at the very bottom of the hierarchy, there would be those rank-and-file prison officers working on the wing. the main difference between the chains of command of the two facilities is about the role and presence of the medical and paramedical staff on the wing. in the asylum, the psychiatric, medical and paramedical staff was more relevant than in prison; at least one nurse would be on the ward h day in day out. seeing it from officers' perspective it became clear that the non-custodial staff presence was in turns perceived concurrently as both welcomed and problematic. 'we have to take care of their security as well, you know? just like it happens with you being here with us now' one officer told me critically. 'they do a lot of things we previously had to do ourselves' said another more appreciatively. focussing on prison officers, the organization of both institution would be quite similar; yet, in prison facility only one officer would always be on duty simultaneously; on the contrary, at the asylum, for more than twelve hours a day two officers would be working concurrently on any asylum's ward (with a close cell regime). firstly, a prison officer working as a wing manager would be working patrolling the wing or, said differently, doing policing (liebling ). secondly, another prison officer working as a rehabilitation manager, would 'work' helping healthcare staff 'just doing rehab' (infra, chapter ) (see image . ; asylum th wing, and prison th wing). during a large period of the ethnography some of the wings in the custodial complex were operating with an open-cell regime in both institutions; those patients and inmates living on any close-cell regime wing, instead, would therefore be daily locked-up for minimum twenty-one-hours a day; almost all one crucial office is the reception (in italian, ufficio matricola) which assure that the required information is gleaned, assessments made upon a newcomer's arrival and that all the available personal information are properly archived and accessible by any fellow colleague that would need them. of those prisoners had the formal right to do exercise (going to the yard) twice a day: it was a close regime cell yet not a cellular isolation like in usa or at the ' bis' for organized crime; all the cells were only closed with barred doors and prisoners would communicate both from one cell to the other, and by the mediation of the persons passing in front of their cell. in fact there has hardly ever been a strict control on prisoners' internal communication within the wing. moreover, many of those prisoners would go to do their exercise on one of the yards or to the recreational wing together. the role of ‘wing manager officers’ was organised in four shifts and was normally performed by a first level officer, yet not necessarily a 'rookie'. the shifts were organised as follows: the first shift ( - ), the second ( - ), the third ( - ), and, lastly, the night shift ( - ). only the night shift would not overlap with the previous and/or the following ones. as said above, in the asylum two officers at a time – one wing manager and one officer doing ‘rehab’ – and not only one, would work on the wing during the 'busy hours' one next to the other; yet not together. one rehab officer would be present on the landing (not necessarily on the wing) from eight o'clock in the morning to nine o'clock in the evening on two shifts. one particular role description was written for each one of the two officers’ role in on particular internal document (the so- called ‘modello a'). that organization seemed to be working quite smoothly and efficiently. however, this distinction between two specialised roles, a security manager, and a rehab manager, seemed to have emphasised the classical prison officer' role ambiguity. prison officer’s duty has been described as ambiguous in its 'dna' at least since asylum (goffman a). on one side 'doing' coercion; on the other, concurrently, doing rehabilitation or, at least some kinds of social work. the emergency squad (or team): the specialised team for using force the last crucial social actor that must be considered here is the emergency squad; its main duty and organizational raison d'être is specifically the symbolic or credible threat of force (infra, chapter ) and its actual bodily use (infra, chapter ). notwithstanding its main duty, the emergency squad is sometimes used for different purposes as well. for one reason or another that team is also called 'available officers team'. it will play a crucial role in the cycle both as a symbolically threatening team, and as a team credibly able to use 'force' whenever required by the situation effectively. it will clearly mark both the beginning and the end of what is called the intervention (see image . and . ). the emergency squad is not usually operating on any of the wings; it would not enter the wing in ordinary, non-critical, day-to-day routine situations if not ordered to do so by either the security manager or the commander. normally, only after an alleged critical event the security manager would order the emergency team to enter the wing in which case the cycle would enter into its second and harder phase, and the threaten or the actual use-of-force would start accordingly. the emergency squad : performing the duty of doing coercion and, concurrently, doing masculinity one particular group of internal officers, including less or more people depending on the time of the day or night, the period of the year, or simply the personnel available were working together in the emergency squad (squadra emergenza); some of the officers usually included in that team would be particularly well built, muscular, and experienced. usually, they would show a in uk a similar duty is performed by a c&r team. face and talk with a strong masculine but not necessarily macho attitude; more often than not, they would be pretty well considered by their fellow officers working in that same hegemonic masculine environment (connell and messerschmidt ; messerschmidt ; jewkes ); yet, some fellow officers had even labelled them as ‘agents with attitudes of back then’. jokes and banters would seldom occurred on the landing among prison officers with one another while 'doing' coercion; yet, 'while waiting for action', particularly so when female young paramedical staff would interacted with officers, officers would be more likely to become more talkative and hilarious; either in the aftermath of an intervention, or simply during routine patrol, a chat, or a cup of coffee with some 'pretty girls' would always be appreciated by 'the boys'; in those occasions, both funny, stupid, sexual stories as well as war stories from 'back then' would easily enter the picture. emergency squad’s officers are, in their own words, ‘always ready for action' (video recorded interview); that expression had a double meaning immediately clear to all involved in the conversation; the first meaning was of course expressed with phrases like: 'whenever the alarms ring or the next crisis occurs we'll be there in a sec'; the second meaning had a clear sexual implication and this did not create any apparent significant problem to the female medical and paramedical staff who would respond accordingly, often with another sexual joke. however, in all interviews i conducted with the few women working at the custodial complex (never on the man wing because in italy it is forbidden by law), female officers would consistently state that their working environment and male colleagues would recurrently displayed macho behaviours and opinions that they would not appreciate. this kind of masculine attitude is quite common in many italian prison contexts (and beyond) and italian women often just accept to cope with it officially, laughing behind their male fellow officers’ back afterwards. i experienced it frequently in the infirmary where i would sometimes stay to write my note sitting in a corner while the women would chat with one another commenting on their macho colleagues – maybe also because of my presence. unsurprisingly, the emergency groups’ main duty would be doing coercion both symbolically and physically (infra, chapter and ) whenever ordered to do so. they would also be frequently called each time a very violent or legally 'dangerous' inmate had to be escorted anywhere outside his cell either within the wing or outside of it. they would be ready to react to any tempted assault accordingly. the emergency team was quite often busy at the asylum; yet, there were few days in which mainly boredom, reading weekly magazines and some tv would help emergency team members to kill their time. doing coercion in the prison and in the asylum: penal power and medical power interacting with one another in the custodial complex of reggio emilia ‘doing' coercion was enforced differently in the prison and in the asylum. in prison, custodial staff most of the time operated independently to the medical staff as far as coercion was concerned. at the asylum, the ‘medical power’ (sim ) and the ‘penal power’– the prison officer’s chain of command together with the director – should have been continuously negotiated with one another. on one side, the psychiatrists needed the prison officers’ capacity of doing coercion in order to compel a prisoner to comply with a compulsory medical treatment, to block him and tighten him to a bed or to restrain him manually for as much as three hours if necessary; psychiatrist would usually either implicitly or formally threat patients with the intervention of the emergency squad in order to pursue their own goals and provide the compulsory treatment either voluntarily or coercively (infra, chapter and ). by doing so, the penal power was helping psychiatrists to enforce their duties and proceed more efficiently and quickly; in the occasion of the request of an emergency squad intervention, psychiatrists would treat officers working in the squad with some degree of deference and often with some humour too; something hardly ever occurring in other situations during day-to-day interaction on the wing in which the psychiatrist would clearly display the gulf between their status and those of the ‘turnkey’. on the other side, the asylum psychiatrists were formally, much less so in practice, the gatekeepers whose permission was required by law before any squad intervention could occur, at least when psychiatric patients, rather than simple inmates, were the target of the intervention. in other words, a psychiatrist would have the authority to allow or to stop the squad's intervention from doing hard-coercion (infra, chapter ). of course, in practice, that formal control could easily be bypassed by the officer in case of alleged dangerous prison-to-prison violence, suicidal attempts or other dangerous prisoner’s self-harm, and officer’s assault, where 'there's no fucking time to call anyone'. moreover, bypassing the psychiatric gatekeeping would be very easy during nightshifts, week-ends and in all the frequent situations in which psychiatrists were not physically present in the facility or could not be immediately found by phone or any other available means and the substitute had not enough reputation or will to enforce his or her legal power. this is not to say that the squad would usually operate like that; yet, it is just to point out that this tension was present, it could be grasped partially by observation, and became much clearer through interviews with the prisoners and the staff. a forthcoming publication will deal with telling coercion. not only custodial and non-custodial staff relationships and hierarchy was a critical issue in the organization of coercion, but also personal idiosyncrasies made the situation even more difficult like it could occur in any other working environment. another peculiarity of the asylum was that at least one nurse, often a woman, would be on the wing – or ward – twenty-four-hours a day (usually organised in three shift of eight hours each) working on the same wing with at least one male officer . despite possible friendships and cover-ups that had allegedly occurred in different occasions, the presence of at least one paramedical staff on the wing impacted to a certain degree on the officer's accountability; on the other side, that female presence influenced the display of masculinity and occasionally hyper-masculine violence (toch ) in some of either the officers and the inmates but this is altogether another research topic. high-grade officers just doing paperwork versus rank-and-files officers 'fighting at the front line' the prison governor and high grade officers have their own offices either ‘downstairs’ ( st floor) in an area separate from the everyday routines, or outside the detention area in the ‘governor’s building’ (in italian, la direzione). all detention wings are located upstairs at the second and third floor of the detention building instead. rank-and-files officers were often described as those not directly working on the wing critically; they would be too uninvolved from the front line, comfortably sitting at their desks outside the detention wings, thereby missing out on the real picture of ‘what’s up inside’. in italy, custodial staff on duty on the wing must be of the same gender as the prisoners. non-custodial staff do not follow the same rule. either the prison or the asylum local commanders is, of course, at the top of the local chain of command of his or her institution. one step below in the hierarchy, there would be one security manager , and one all-wings manager that should be at least a superintendent. the former would be responsible of the order and security issue; the latter, would be the superordinate – or as officers would address their superordinate: the boss – of those officers ruling the four wings. despite the law prescriptions, both roles just described were routinely performed by first level officers. to be honest, however, the general commander told me that things would have been changing soon. a major cleavage clearly existed between very low ranking staff – who would work on / basis shifts – and higher ranking officers who would primarily work during normal 'office time'– this internal division is well known both in policing and in prison staff literatures. lower rank officers working in the 'external group' helping managers doing paperwork, or in the 'internal group' fighting on the wing at a low level of the hierarchy, another division seemingly related with the previous one, separated – not only symbolically, but also physically – rank- and-files officers working in the internal group doing the dirty work on the wing and those helping 'managers minding their own business and paperwork'. the interactions and even more the narrations about those interactions recorded in the interviews among one another separated the lower ranking prison officers (first level) clearly into two large groups: on one side, the external group, that would include those officers never working on the wing; in other the security manager should be by law be at least an inspector ( rd level); yet it was often performed by an officer with a much lower grade. in italian, capo-posto, or preposto. words, those officers having 'quasi-regular' job, less polluted (douglas ) by the constant interaction with prisoners, less exhausting, and less penalised by the effect of prison work (liebling and maruna ; bennett et al. ). on the other, the internal group that would include those officers mainly working ‘on the front line' in the detention building and more or less regularly doing 'wing shifts'. the officers working as 'internals' would perform one particular task or another, depending on the day's schedule prescribed by an official document that is communicated daily at the 'operative unit meeting' (in italian, conferenza di servizio) in which a high grade officer would order face-to-face with his or her subordinated the day’s duty to all those starting their daily shifts. some of the most important activities performed by officers working in the internal group are: supervising prisoners working on the wing, either as wing manager (in italian, agente responsabile della sezione), or as rehabilitation officer (in italian, agente responsabile della riabiltazione); being part of the emergency team; being in the ‘reception' group to the new patients (and prisoners) daily entering the institution; carrying out patrol duty on the yards when prisoners 'exercise' (in italian, sono all'aria); supervising visits, when prisoners meet their own family or other authorised visitors of theirs (in italian, vigilanza sale colloqui); supervising prisoners’ visitors while they are waiting for their turn to meet a person in custody (in italian, rilascio colloqui). some officers would prefer to work in the external group, others in the internal one for different reasons. staff preferring to be internal normally would think that working on the wing is what being a ‘proper’ prison officer is actually all about, and this could be culturally explained referring to the police and prison officer's culture literatures (bennett et al. ; wieder ); the wing is i thank enzo colombo for stressing the relevance of douglas. where the action is and where 'war stories' are narrated and experienced; yet, a more pragmatic explanation could be included in the picture: many officers also want to work in the internal group for two pragmatic reasons; firstly, doing night-shift pays much better (about % more, or so); secondly, it gives a better opportunity for organising one's life and family's responsibility flexibly. however, some showed some proudness telling about their own 'actual' prison work. one prison officer told me, they [the officers working in the external group] just do paper work and do not have dirty hands at the end of the day, they don't risk assaults, and they are not afraid and busy protecting each other on the wing [like we do]' (field note). each particular officer has the right to apply to be part of the external group for a fixed period of time on an equal opportunity base. an officer has the right to apply to a particular position after a certain period of time working as internal; the right to obtain a work 'outside' the wing is intended to allow officers to calm down, and reduce stress and anxiety that might be due to both emotion work and emotional labour (hochschild ), thereby looking forward to reducing burnout and sick leave, a real organizational problem in italy (buffa b) and beyond . working with the 'crazy' versus working with the 'criminals' a last divide highlighted here would seemingly influence the officers’ interactions with one another. due to the particular organization in reggio emilia, in which both a prison and a forensic psychiatric hospital were working next to each other, another clear us-versus-them approach characterized many however, it is worth noting kraska ( ) argues that being at the front line can also be appealing to some officers particularly imbued in a militarist culture as well as for researchers. of the relationships between the officers working with the 'crazy' and those working with the 'criminals' at most grades of the hierarchy – yet, to a different degree. that divide clearly labelled those working in the asylum 'with the crazy' that often explained their jobs to me confronting theirs with the real officers working in a real prisons – yet, the majority of the officers in both facilities considered both institutions primarily as custodial ones. this divide was even evident through observation. both ways in which officers of one group sat at a table at the canteen, and the spontaneous groups outside the cafeteria in which people were smoking or simply talking with one another, were two easy examples in which that divide was visible. normally custodial staff working in one group would not mix with fellow colleagues working in the other; during nightshifts, when only a few officers were inside, things might evolve differently and the prison officers working in both facilities might eat together (see also wieder for an ethnometodological approach to the issue of spatial configuration at the prison-canteen’s table). in almost all interviews conducted over the last period of the ethnography with both prison and asylum's officers, it clearly emerged that officers working at the asylum had a much stronger bound with each other than those working 'on the other side' . two officers that started working at the asylum a few months before being interviewed expressed their positive surprise about the friendly working environment that they had found at the asylum; they contrasted it with the previous long experience they had in prison where 'coldness, distance and even [alleged] unfairness', in one officer's words, characterised the officers relationships with one another. that benevolent representation of the asylum might be caused by the interviewee’s understanding of me being on the side of 'on the other side' was the usual expression by which officers working in the asylum referred to prison. i never heard the contrary happening. however, it took me some weeks to understand what they all mean with 'di là'. officers working in the asylum; yet, that divide was also often perceivable during observation. trading working shifts within the internal group in the asylum: performing both authority and paternalism shifts are organised differently between internal and external staff. some particular jobs– like the officer working in the kitchen – would have a specific shift. the main difference, however, is that 'internals' would work on / shifts and regularly do night shifts and week-ends as well, day in day out; on the contrary, officers working in the external group – except those working at the 'block house', the very entrance to the prison, and other gates – would never do night shifts and would often only work on a maximum two shifts basis; often on one shift only. these differences would be crucial to comprehend the particular staff cultures and the different sense of belonging characterising those working either in one group, or in the other. although, this is not the goal here, these particular cultures imbue the officers' narration of 'doing coercion'. the division between those working in one group or in the other was reinforced by the two different time schedules by which the shifts of the first and the second group were organised. due to those different time schedules, the possibility that any officer had to frequently meet a colleague from the other group was significantly reduced to a minimum and this would not help in integrating the ones with the others. discussing the issue with officers, however, not all officers agreed to emphasize that divide and contested my understanding in different ways; a few officers did not seem to be interested (or even aware) of it, and showed indifference; few even argued that they would work in one group or in the other indifferently. 'we are all prison officers, at the end' (field note). despite those different opinions, however, that cleavage was clearly in the picture. shifts were regularly 'traded' and exchanged among colleagues. it was a very common activity on the landing during one's duty; in some periods more than in others. i have regularly observed it time and again throughout the entire fieldwork. not only, have i observed older staff friendly convincing rookie officers to consider older officers' needs and exchange their shifts with them accordingly thereby respecting their authority; but i also observed older staff being paternalistic by helping rookies ‘to have some fun’ exchanging their own shift with their younger fellow officers who would publicly show thankfulness afterwards both with the benefactor and with other colleagues working in the internal group with him; thankfulness would be shown during both informal and formal conversations for at least a few days. before entering into the picture of ‘doing’ coercion by exploring the ways in which the 'cycle of the use-of-force and violence' is repeatedly performed by officers on the landing (infra, chapter and ), in the next three sections of this chapter i will attempt to tell narratively what it means to enter coercion physically, with one's own body trying to interpret, by doing so, two subjective standpoints. i will first attempt to convey a partial and particular description of what it meant to me as a researcher entering prison with a badge. then, i will attempt to illustrate anecdotally some emotions about entering in reggio emilia prison coercively. the last section, being about prisoners is particularly risky here; my position in the field has always been visible on the officers' side in this ethnography; yet, my previous experiences in many other prisons had greatly helped me in attempting to do so. i thank all prisoners that asked me to hear their voice despite me being with the 'enemy' and showing (on purpose) no particular interest in them. without their contribution to the research, and the human experience i had while conducting it, the research would have been significantly different. due to the prisoners' cooperation, through the last section, we will have the opportunity to move further to the next chapter symbolically 'hand-in-hand' with those who live coercion on their very bodies the most: the prisoners. their worries, their desperation, and their hopes will accompany us to the core of the prison, the detention wing. those wings are where the cycle occurs more frequently (infra, chapter and ). entering coercion as a researcher (or simply as staff): the claustrophobic architectural route to the coercive environment of the wing entering the custodial complex is neither a quick walk, nor is it emotionally neutral. one has to pass three main supervised gates and approximately twenty barred doors , one after the other before entering any detention wing . first of all, to enter the prison one must pass through a gate called 'block-house' . it's the first checkpoint that must be crossed to enter the low security area of the complex. the perimeter of the complex is protected by an approximately six to eight-meter-high, white fence. by showing one's documents to the prison officer at the block-house, the first security check procedures would begin; the officer has to control each visitor's access-permission level and check its validity. afterwards, he or she would give to each authorised visitor the particular appropriate badge: a green one for a video of the road to the inside, without being cut, is visible privately on demand. it is not authorised for publication in any form yet. during fieldwork, participants hardly ever called the asylum ward in that way; instead they referred to it using wing; i will do the same therefore using wing to refer to any area where asylum patients' and prisoners' cells (or 'rooms') are located. that gate has that english name. that's the only word used to refer to it. those who are not allowed to proceed to the following gate and are therefore compelled to stay within the low security area; a red one for all others visitors that are authorised to enter the security areas. those areas are secured by a twelve-meter-high concrete wall that could be controlled by both cctv cameras and armed sentinels; yet, de facto, the camera did not work, and there was no personnel on the wall. normally, the visitor's role is clearly written on the badge (lawyer, magistrate, visitor, teacher, etc.); however, after a couple of weeks in the field, hardly ever was i given a badge; they all seemed to know me and would display either indifference or trust. in reggio emilia only one entrance – the block-house – was available for all the people entering the custodial complex: keeper, kept, visitors, prisoners' visitors, and so on; normally, not so many visitors would enter or leave the institution on a daily basis there. on the contrary, in larger institutions such as the bigger ones in rome, milan and turin, to recall but a few, different gates are provided to clearly separate at least those entering the prison as prisoners' visitors from all the others (staff, volunteers, politicians, journalists, etc.). three buildings are located within the minimum-security area between the white metal fence and the concrete wall that isolates the security areas; those three facilities are even visible from the outside of the institution through the fences. the first facility is an independent two-floor building built near the fence, just a few steps away from the main entrance (block-house); it is completely separated from the main custodial complex; it hosts two very different groups of persons: one is the prisoners kept in custody with a particular italian probation measure called semi liberty (art. of the penitentiary act) that live in a low security wing in one side of the building; 'the sentenced person can spend a part of the day out of the prison in order to work or to carry out any activity that is useful for his social reinstatement; it can be granted after a the other is the 'transferring and escorting' prison officers' team (in italian, nucleo traduzioni e piantonamento) that has its offices on the other side of it. the two remaining buildings within that low-security area are leaning on the concrete wall and are situated just in front of the main entrance to prison: the block-house; yet, none of the two has any other privileged passage through the wall (to the best of my knowledge) to enter directly the secure areas. only one gate in the concrete wall allows anybody with the appropriate security clearances and day permit to enter (and to exit) the security area beyond it; this is the second supervised gate called 'portineria centrale'; in english it can be translated to central gate. one of the remaining two buildings, a two-floor office facility, hosts the governor and all his staff, as well as other civil and custodial personnel who hardly ever have to work on the wing; rarely beyond the concrete wall. on the ground floor of that building, a quite-wide, shabby lobby is used both as a 'check in' point for prisoners’ visitors who have previously booked a visit, and as a delivering point where visitors (and other persons such as volunteers) can leave any allowed goods to staff who would firstly check it out, and then would bring it inside (mainly, cloths and food items), and eventually would deliver it to the specific inmate who was the recipient of that particular good. the other facility is a three-floor building; the bar (there, in italian, called 'spaccio'), the canteen (in italian, mensa), the unions' offices and the prison officers' meeting room (in italian, sala conferenza) are all located at the ground level of that facility one next to the other. above, on the two remaining upper floors of the facility, officers living in the barracks would share a double-room. certain period of the prison sentence, depending on the seriousness of the crime perpetrated' (http://www.euprobationproject.eu/national_detail.php?c=it). ‘nucleo scorte e traduzioni’ does also security service for the ministry of justice’s staff; yet, in this ethnography i only saw them work with prisoners. if any person with a red badge or a staff member is heading towards, either the prison, or the asylum, he or she has to move forward to the central gate. all the prison officers and other enforcing agency officers must leave their fire- weapons there. officers' protective equipment, such as riot helmet and riot shields are hardly ever used and are stored in that same area. the emergency squad might exceptionally use them if authorised by either the general commander of the prison governor. all those equipment are stored at the central gate as well; its use is strictly regulated and controlled. to be honest, some 'tools' are alleged ‘secretly’ hidden near the wing just in case; yet, they are very rarely used. at this gate, the identity of each visitor should be double-checked, then the officer would scribble the person’s name, surname, role or reason of the visit, and the entrance-time on an old paper register from the s transformed ad hoc in a 'visitors book'. eventually, the officer would let him or her enter the security area with or without escort depending on the level of the clearance of the particular person entering the facility. anybody intending to proceed through the internal gate, including visitors, could be electronically searched, and face new security checks. i have been often stopped at that gate to be controlled before being authorised to move further towards my destination. the officer working at that gate is responsible to secure the gate by stopping those who are not allowed to cross it either in one direction or in the other by all means: even calling the emergency team is an option. he or she should also keep the records updated in the registers provided, and should also politely order to each and every visitor and staff to put all forbidden items not previously authorised into a locker provided; weapons, cell-phones, lap tops, fire-weapons can only be brought inside under very exceptional circumstances clearly stated by the law. cameras, hard disks, usb pen, medicines, umbrellas, knives, forks, spoons, chewing gums, and everything not expressly authorised cannot be taken beyond that gate. each staff member would start his or her own shift there by sweeping the badge before the shift-start time. afterwards, simply walking straight-ahead through the only corridor available, one would arrive at a secured electric door that separated the corridor, that passes from one side of the concrete wall to the other, from the 'garden' in front of the entrance of the secure custodial areas of the facilities of the custodial complex; at that stage, the two secure detention facilities: the asylum’s and prison’ secure detention wing of the istituti penitenziari di reggio emilia, would only be just less then forty meters away. vehicles are normally not allowed to proceed beyond that area; yet, some personnel or visitors might have some specific authorizations to do so. police, carabinieri and any other italian law enforcing agencies bringing an arrestee inside or arriving to conduct a police interrogation would just park in front of that gate anywhere; in fact, parking signs are unavailable and officers would park their vehicles anywhere . in order to continue the journey towards the detention wing, leaving the central gate behind, one would have to pass through a long corridor ending in a rotonda. the complex general commander's office and the administrative logistic team's offices (in italian, ufficio matricola) were just a few steps away from there, between the entrance to the prison and the entrance to the asylum. the prisoners' kitchen was nearby as well. at this stage, those heading towards the asylums must turn left at the crossing following the self-printed-read sign another less secure wing is in the area next to the governor’s building. private or public company providing maintenance service, bringing food to the kitchen, and collecting the garbage with bin lorries usually move on towards the back of those facilities. in italy, sentenced or defendant's prisoners that nust be escorted to the outside of custodial institutions, can only be escorted by the penitentiary police (prison officer). on witch a black arrow and the text o.p.g are printed on. instead, heading towards the prison (c.c.), one should follow the light-blue sign with the arrow pointing to the right. at the rotonda one officer might occasionally be in the 'security box' policing the area. however, nobody would normally be on duty there and, therefore, both the general commander's office and the prison would be accessed with no further security-check. on the contrary, the asylum can be less easily accessed than the prison; in fact, other two doors controlled by cctv cameras (among the very few cameras actually functioning in all the complex) must be passed to enter into the asylum. above the door at the entrance of the facility a label reads 'ospedale psichiatrico giudiziario'. entering each one of the two institutions, one would automatically arrive in two symmetrically designed buildings. in each of the two one must first walk upstairs (using a lift is possible on request) arriving at yet another long corridor. in each of the two corridors the local commander, the 'security manager' (in italian, ufficiale addetto alla sorveglianza generale) and the officer supervising the men working on the wings, the 'all-wings manger' (in italian, capo posto or preposto) would each have his or her own office; in the same corridor other particular offices and facilities were present in each one of the two facilities: i.e. some medical offices and infirmary. in the asylum, then, all the psychiatric offices were located around that corridor as well. in both institutions the gate to the detention wings' area was just in front of either the prison, or the asylum commander’s office, and it was controlled in each particular institution by a particular prison officer in a security-box who would regulate the movement to and from the detention wing by opening and closing an electronically controlled barred door. a label hanged next to that door in each facility; it read 'detention area' (in italian, area sezioni detentive). that was the third of the three main supervised gates we introduced at the beginning of this section . in the asylum this gate was called 'first-block' gate (in italian, portineria primo blocco); in prison, accordingly, it was called 'second-block' gate (in italian, portineria secondo blocco); in fact, the asylum’s detention wings were technically named first block, and the prison’s detention wings were called second block. each wing has one entrance barred door controlled by an officer. moving from one wing to the other on the same floor is just a very short walk. to go upstairs or downstairs, a visitor must, in fact should, use the elevator; the prisoners instead must use the stairs, or if necessary be escorted by one, or more, officers in the lift – depending on the security level of each particular prisoner. to go to the closed wing on which the ethnography was mainly based, one had to go upstairs and turn right at the first floor; normally the door was open and, therefore it was possible to enter the wing straight away if allowed to do so by both the security clearance and the 'wing manger'. all detention were of course provided of cctv surveillance; yet, neither cctv camera were functioning (they stopped working just about twenty years ago said to the researchers different sources that justified it in very different ways: from budgetary reason, to guarantee unaccountability), nor automatic cells-doors were available there. officers would supervise inmates, keeping an account of the ones in their charge and tried keeping order and security. they were doing so by gazing what was visible from a particular standpoint, in any particular time, and by face-to-face interactions on the wing with inmates. on that wing it was just like 'back then' but with sanitation in all cells and tv for all prisoners). of course they are two different ones, but each of the two would be the third for any visitor either entering the prison or the asylum. from suspect to prisoner: a 'newcomer' path to the cell (and the labelling routine) this section simply tries to reflect about what i have seen occurring each time i witnessed a new arrival of an arrestee – new arrestees were arriving on a daily basis there; yet i actually witnessed only about a dozen of those arrival; sometimes only partially – i always sensed a flood of raw emotion and felt completely uncomfortable; those have been crucial occasions in which it has been possible to observe the cultural and emotional gulf separating the keeper and the kept from one another and their interactive interactions; yet, it has often been emotionally too difficult to do it properly for me and, it was not in my research agenda. that particular situation would of course deserve an entire study of its own. here, therefore, i will simply limit my narration to unpack some impressions i matured as a researcher on prison officers’ side witnessing a newcomer’s arrival. a person under arrest arriving to reggio emilia complex would be either facing his or her first prison arrest, or be a returning prisoner; of course being in one or the other situation would influence his or her situation significantly. normally the newcomer would enter the institution handcuffed inside a law enforcing agency's vehicle – either a car or a bus – without any clear information or induction to actually understand either what would precisely happen to him or her in the near future, or where and for how long he or she will end up killing time over the next weeks, years or even decades. however, exceptionally, a person sentenced to a period of time of imprisonment can even reach the institution by his or her own, declaring his or her status to the officer at the block house. each arrestee would be under the enforcing agency's authority that had put him or her under arrest – such as i.e. the police – until the officers and the kept arrived at the internal gate. there, a prison officer would register the arrestee on the 'prison newcomer register' thereby, transforming that particular arrestee into a prisoner (or a psychiatric-hospital-patient) – either a defendant or a convict. by enforcing that procedure prison officers embedding the institutional authority would transform a police suspect into a person in prison custody who is expected to 'spend time' there for either a predictable or an unpredictable amount of time . a new person stands just a meter or two from the central gate. the arrestee, the prison officers and police officers are all one in front of the other forming an irregular group of people. it looked like a seemly unorganised group of people: yet, one person was handcuffed and in civil cloths, all the others were wearing the prison officers’ uniform or the police officers’ one. on one side, both prison and police officers who displayed a detached and cold attitude imbued in their institutional bureaucratic day-to-day job of street-level civil servants in uniform. on the other, the person whose face would normally be a road map of emotion, travelling from traumatised, to exasperate and then on to frustrated. few new prisoners displayed no emotions at all when escorted inside; others showed anger and frustration and would move back and forth as much as possible maybe trying to cope with the situation. on one side trauma was visible and embodied, on the other it was mainly indifference or 'just work as usual'. during those encounters, in fact, officer situation was embedded in boring routine, day-to-day rules, regulations and procedures…’ a lot of paper work’ as one put it; on the contrary, new prisoners were trapped in a situation that same officer would also register prisoners returning from a temporary exit in the 'prisoners register' and, lastly, visitors on a 'visitors register'. they would labelled defendant, sentenced, or patient. characterised by uncertainty and powerlessness clearly affecting their life and the life of those close to them such as i.e. relatives and friends. this was particularly true for those who had been imprisoned for the first-time; yet, it was also true for others who had not yet been in that particular facility before or for those who had been there a few years before and remembered it all too well to ‘take it easy’ as sometimes suggested by officers. returning prisoners displayed negative emotions less frequently, and seemed to be more interested in saving their face and reassess or reinforce their previous internal reputation than to display their weakness and hopelessness (which was often described openly by prisoners in the interview when telling about their arrival). each time any new prisoners (both a newcomer or a returning one) is brought inside (asylum or prison does not really matter here) the prison officer working at the internal gate must take the prisoner and his or her documents, as well as records from the law enforcement officers who brought him or her there. once the newcomer has been recorded on the register and is officially under the prison authority , the police would unlock the handcuffs still tightening the person's wrists until that moment, leaving the arrestee to the prison officer who would put him or her in an empty and unpleasant provisory waiting cell until the 'administrative and logistic office' (ufficio matricola) would allocate the prisoner to a cell in the appropriate wing or, in a week with a high level of overcrowding, temporarily in any wing where a bed would be available at that particular moment. using handcuffs with a prisoner inside the institution is strictly forbidden by law in italy; the reason why seems to be unclear to all officers as well as to prisoners. although, defendants are formally under the magistrate jurisdiction and are only 'stored' in prison (field note) all persons imprisoned are also under the prison officer’s authority, in practice during their conviction. afterwards, for an unpredictable period of time normally lasting from about one hour to a few hours the inmate would be alone killing time in an anonymous waiting cell with nothing inside to avoid either lethal and non- lethal self-harm; over the period, the prisoner would be suddenly and without notice escorted time and again to take a picture, to check the fingerprint, to do the medical and psychiatric visit, to see the social worker and so on. few prisoners presenting clear suicidal risk would be under continuous surveillance for their own safety. eventually, he will be escorted to his cell in a particular wing; he would experience leaving freedom behind and starting his new period of incarceration. arriving at his final destination would require him to push a cheeky trolley carrying his few belonging packed into garbage bags to his wing where a dirty and stinking cell of a few squared meters, normally with someone else inside, would become in a way or another his new 'home' for some time. in other words, from the very beginning of a person's incarceration, a contrast was clearly evident between, on one side, the officers who were just working as usual tracking those 'fresh and blood' inmates just as a new item to be tracked and worked through the system day-in-day-out; they were simply doing 'people-work' (goffman a: ). on the other side, the particular singular emotional and often traumatic situation of those who were compelled in the coercive embodied process of incarceration and tragic loss of freedom. to be honest, however, i have also occasionally seen a very different picture as well. few 'returning guests' had been treated particularly respectfully showing no indifference at all, but deference instead; in one occasion as a kind of friend. those were treated normally; like one would expect to be treated entering a hospital or any public institution; there it seemed really special. why particular prisoners would deserve such a different treatment will be in part discussed below; yet, it showed me that a different way to treat newcomers was not only possible, but already existed and possibly should become the norm; which is far from the reality (this is of course only one normative opinion). closing this chapter, we must remember that this is a timid description of how the detached bureaucratic institution would welcome many prisoners entering their new ‘rooms’. this description is not only based on the observation but on the narration collected in the almost one hundred interviews collected inside and some here of research experience inside. however, it must be kept in mind that this work is mainly focussed on staff, and particularly on ‘doing’ coercion. moreover, it is also crucial to remember that staff must survive their uneasy situations as well; something that harkin called the pain of policing ( ). working in such an environment is far from easy and often impact on prison officers’ well-being and psychological condition as well. however, i am not of course suggesting that being a keeper is as traumatic as being a prisoner, because normally i would guess it is not; i am only saying that being a prison officer can be, and for some officers is, very traumatic indeed (see crawley ; gonnella ); it might also, according to officers, occasionally lead to prison officers' suicides; yet this is far from demonstrated. chapter implicit coercion on the wing at the outset i want to make clear something very important to comprehend this chapter and the following ones. since the last italian prison rule reform in and following laws, the italian prison officers are not only on duty to perform order and security but also to do or help others doing prisoners' rehabilitation. though, the rehabilitation/coercion dilemma is nothing new. it has been repeatedly explored in the literature as early as in the classic works clemmer ( ) and sykes ( ). in reggio emilia prison officers had a large set of duties also focussing on rehabilitation in a way or another. in other words, prison officers were not all mainly or exclusively doing coercion; yet, ‘doing’ coercion is a crucial and specific characteristic of officer’s duty, and more importantly here, it is the focus of this particular work. drawing both from the international literature and the fieldwork, chapters and show that coercion is surely one of the crucial characteristics of both prison bureaucracy as such and, more importantly here, of the interactions among the keepers and the kept and of their power relationships. chapter illustrates both how ‘doing’ coercion is formally organised in the particular local officers' chain of command at stake, and how some internal cleavages informally shape the relationships and interactions among the keepers and the kept. king et al. ( ) argue that 'whatever else prison [...] may also be about, [it is] certainly about keeping people in custody' ( ), indeed; therefore, prisons and custodial institutions more generally are clearly always also about coercion, either explicitly or implicitly. they are coercive institutions (coyle ). the implicit and explicit degree of the coercive 'nature' of each particular custodial institution may vary as well as the level of visibility and of rhetorical display of it; yet, coercion is often experienced, performed, resisted, and displayed between the keepers and the kept on daily bases; it is also clearly there when any person is locked up in any environment, let alone in a cell, without the possibility to do more than a few steps, or dozen of steps, freely without being physically blocked; even a researcher trying to exit the building would need the help of others to do it. despite many other public institution (such as banks, airports, factories, hospitals) might seem to operate apparently in similar ways regulating access through security checks, cttv cameras, and gates, in the custodial complex that aspect is extreme and many person must be kept in, if necessary forcibly. moreover, in reggio emilia, there was not any emergency exit for those locked up in their own cell; nor was there anyone for prison officers working on the wing. tragedy have already occurred in the past elsewhere (i.e. in the female turing prison ) and will occur again in case of fire, despite the heroic attitudes of some officers who would probably risk their due to a fire, in the female facitity of the prison of turin, women died: prison officers and prisoners (source, la stampa, june, the rd ). own life to safe any single person in danger of life, either a detainee, or officer. the centrality of coercion and its more or less suffuse presence in almost any aspect of the everyday life inside has clearly emerged in different moment of the research. not only in the ethnographic observation by which the ethnographer has perceived it bodily and psychologically and has often be affected by it (infra, chapter ); but also, yet in different ways, in the formal interviews with the prisoners and the staff, either custodial or medical ones that have been conducted during the ethnography. one prison may offer more or less (un)comfortable ‘rooms’ , opportunities and ‘services’ than another; yet, each custodial institution – a prison, an asylum or an immigration removal centre – is, and remains, quintessentially a coercive institution hosted in a coercive facility in which each and every relationship between an officer and an inmate is at least implicitly imbued in coercion. the main goal of any custodial – or coercive – institution is after all keeping those in custody in custody to serve either a fixed or an indeterminate sentence (or a remand order) by (almost) any means. in other words, coercion is always in the picture inside. coercion imbued in domination inside the wall, interactions are clearly shaped by more or less dynamic structures of domination (athens ; infra, chapter ) both between the keepers and the kept, and within each one of those two groups. sykes put it clearly by writing that nowadays, they tend to call cells in that way in formal document in italy; yet, nobody inside uses that ‘polished word’ inside referring to any locked prison cell; neither keepers, nor the kept. [t]he most striking factor about this bureaucracy of custodians is its unparalleled position of power – in formal terms, at least– vis-à-vis the body of men which it rules and from which it is supposed to extract compliance (sykes : ; emphasis added). despite the vast and interesting literature on prison resistance and even on prisoners 'doing freedom' (ugelvik ) within the wall, the blunt reality i observed in reggio emilia was also interesting from a completely different point of view. inmates and psychiatric patients, both italian and foreign-nationals were locked in ‘their’ cells often with another prisoner for a certain amount of hours per day. whenever each of them had the right of being out of his cell, for any reason, he would be still trapped into larger but still very limited coercive spaces (jewkes and johnston ) and compelled in the constrained available network of possible interactions, goods, and prison routines – and in the particular histories and chains of (previous) interactions that have already occurred in the past. this chapter specifically deals with implicit coercion routinely in the picture in day-to-day ‘non-conflictual interactions on the landing. chapter and , instead, will mainly focus on officers threatening and doing coercion after a so- called ‘critical event’. despite the long-standing dilemma between coercion and rehabilitation introduced above, in italy, de facto, despite all the managerial rules and regulations officers have always been (and some are still now) often busy with ‘doing’ coercion. over the last two decades or so, the italian criminal justice system’s approach to detention has been changing significantly. during the last year a crucial re-thinking of the prison system is on its way (the ministry of justice has organized something that we might call a think tank made of experts and professionals to reform the prison rule and the prison system thoroughly) ; yet, due to organization constraints, budgetary limits and the particular local professional cultures, the situation within many italian custodial facilities, and in particular the one studied here, is ‘far from satisfactory and still show some criticality . officers patrolling the wing over the last thirty years, traditionally, only one officer has been present at any particular time on any wing in both institutions in which this research had been conducted. normally, a closed-cell regime would be at stake; more recently, however open-cell regime has (ri-) entered the picture as well as the new organizational approach of the ‘dynamic security’ regime (yet, on the closed- wing where observation was mainly conducted there was no dynamic security yet). on the wing: wing manger officers doing proper police work versus officers just doing rehab the previous chapter illustrated three divides that shaped the officers' interactions with one another and the formal and informal hierarchies that imbued both the asylum and the prison. however, specifically referring to the asylum (the forensic psychiatric hospital), there is still another crucial divide; see ‘gli stati generali dell’azione penale’ (in italian) https://www.giustizia.it/giustizia/it/mg_ _ .wp. some officer said that dynamic security was introduced in response to a new recent european sentences for inhuman treatments inflicted to italy by echr (european court of human rights) (see, vianello ). the echr press release (echr ( ) . . ) reads: ‘in today’s chamber judgment in the case of torreggiani and others v. italy (application no. / ), which is not final , the european court of human rights held, unanimously, that there had been: a violation of article (prohibition of torture and inhuman or degrading treatment) of the european convention on human rights. to be honest, the problem has now been reduced at the national level significantly and overcrowding is not an emergence in the national figures anymore (see: www.giustizia.it); yet, situations vary significantly from one facility to the other, and hr remains a crucial concern in italian prisons. this section will in fact focus on: ‘officers ‘doing’ coercion (proper police work) versus officers just doing rehab’ (already sketchy introduced in chapter ). in fact, in the asylum’s wing two officers would work contemporarily on two-shift basis on the same wing. each one would play a particular and clearly defined job performing a particular set of duties. the divide between the two officers working concurrently on the wing can be described simplistically as the divide between 'doing proper police work', and officers doing social worker job’, as a few put it. the first would have the crucial duty of patrolling the wing mainly by either threatening or ‘doing’ coercion (infra, chapter and ); the other officer would instead have the softer, ‘feminine’ duty of care. to put it clearly, he would have to help other non-uniformed staff or prisoners to perform rehabilitative activities, showers, tidying activities, support to doctors and psychiatrists, and so on. each role, either 'doing' rehabilitation or 'doing' coercion, was always performed by one ( st level grade) officers at a time, both belonging to the internal group. from monday to friday, there would usually be two officers working contemporarily on the same wing from a.m. to p.m.; the rehab one would have slightly more freedom of movement than the officer responsible of the wing, therefore they would not always be concurrently on the wing together in practice. observing the working practices of the officer 'doing' rehab and the other ‘doing’ coercion over a sufficient long period of time, as well as, concurrently, discussing with the staff about their experiences of working on the wing, helped to get at least the gist of the officers’ different interpretations of each of the two roles. officer would be compelled to perform coercion or the rehab according to an official document (modulo a). usually, the same officer would display a quite different face and attitude when performing one role or the other, signalling, by doing so, his particular role in any particular moment both to staff and prisoners on the wing. officers would agree that the officer on duty as wing manager is the crucial one; one officer explained (and justified it) by saying that 'after all, this is still a prison!' clearly downsizing the role of 'doing' rehab. another officer argued that 'order and security' was not only the role in which ‘one does the proper police work, and not bullshitting', but also 'the reason why to be a prison officers or a police officer as such'. in that way, he claim what being a prison officer, the hard-core duty and the master identity, would be. doing coercion also marked at least some officer’s sense of belonging clearly, distinguishing those in blue uniform to all the others. other comments would help to have a more complex picture; yet, a great deal of them would show how that particular local prison officer’s culture was still heavily imbued in old officers’ values and traditional practices. in other words how, those hegemonic local culture would be distant to the ‘new’ rehabilitation-duties and soft-power orientation of the official ministerial policies and public discourses. the big majority of 'rank and file' officer's interpretations were clearly biased toward a particular understanding of the prison grounded on order and security (drake ). officers' interpretations often addressed the well-known questions: 'what is prison?', and 'what is it for?' in two main particular ways that to a certain extent are related to one another and are often also found in the populist debate. the prison would often be interpreted firstly, in terms of public discourses about uncertainty, drugs-related criminality, crimmigration and security (see also drake ); secondly, in terms of either collective or selective incapacitation before, during, or after detention (mathiesen : – ; zimring and hawkins ; malsch and duker ; see also mathiesen ). those two sets of ideas emerged and re-emerged time and again both in the ‘natural’ discussion occurring on the landing between one officer and another, as well as in formal interviews; that kind of populist penal culture was not only widespread, but also predictable in this particular historical moment in italy. however, much less predictably other discourses sometimes emerged too. of course there is not any fixed and unique prison officer’s culture inside. notwithstanding ‘doing’ coercion was clearly considered to be the officer’s core duty by the vast majority of staff, either custodial or not, inside. some officers, less so the younger ones, showed interest in the complexity of the new-frontiers of their job that would include a much more complex attention to human rights and to the needs of those in custody and of their victims. however, some have also righteously stressed the prison officer's own needs for better safety, a better training, a better and newer equipment, a better hygiene, and so on. officers embedding a less masculine and military oriented cultures, however, would less openly display them in front of their fellow officers on the landing, being worried of jokes, retaliation, isolation, if not bullying. they would publicly display a low profile, instead, accepting the situation ritualistically (in merton’s sense). this security-oriented hegemonic local officers’ culture is hardly surprising taking into account that some officers have clearly stated that ‘their’ institution has long been considered being, and still would be, a punitive institution where at least some most difficult 'dangerous and difficult' inmates would be send to as a punishment from breaching the rules in more rehabilitative oriented institutions. whether or not the reason to be sent to reggio emilia would also be punishment, something explicitly and strongly denied only by a few senior officers and by the area manager, in practice, prisoners arriving there, frequently, had been very difficult ones sometimes arriving by less ‘hard’ asylums or prisons (this was also happening because psychiatric assessment was frequently conducted in the asylum and not elsewhere); those new 'difficult' prisoners were also very likely to create very serious problems shortly after arrival. whether this was a consequence or the cause of the alleged punitive reputation of that facility it is still unclear. however, some officers' interviews and many prisoners' ones disclosed that the ‘normal’ welcome to the prisoners for many years would have been to be tight to a constraint bed for a week or so for no reason (video recorded interview with a senior officer in which he explicitly asked to show his face to the reader). the area manager completely contested this interpretation based on shared understanding from below by saying that ‘punitive institutions do not exist in italy’; the formality and the institutional role of the manager might have informed his formal and lawful version of reality, while performing a public communication with a researcher. it is also likely that officers speaking to the researcher might instead have emphasised old legends and ‘war stories’ by telling their stories in a colourful and rhetorical way. however, i am not sure whether or not to dismiss the interpretation i got from below since it has been confirmed by many keeper and kept: i would at least consider it to be a possible representation of the shared perception of that situation from below. the ministry of justice and in particular the d.a.p. (department of the penitentiary administration) policies have been addressing and challenging this first-line officer culture straightforwardly for many years in different way (i.e. by recruiting the two higher level of the prison officer chain of command among people with an university degree, with better knowledge and sensibility about social issues and punishment); yet, paradoxically, most new rank-and- file officers, in order to become prison officers, must show in their cv to have served in the army for at least one or two year, possibly in peace-keeping international mission . therefore, governors, and high ranking officer would be much more sensible to many critical issues such as human right, personnel training, accountability, decency, prisoners’ work and so no, than bas grade officers that, at the end, are those who live together with prisoners, day in day out. that cultural gulf between the high ranking and low ranking officer, not to speak about those with no blue uniform, is something that prison have in common with other bureaucratic organization. that cultural gulf was neither fully challenged nor appreciated by either parties, in particular, not by low ranking officers who would often contest this new good-doers attitudes imbued in their superordinate (higher ranking officers, governors and area manager) contrasting them with the well-known hard reality of the wing officers would know all too well. the wing manager: prison officers' shifts the asylum's wing, in which this ethnography is based, is still operating with a closed-cell regime in a traditional fashion; patients and inmates living on that wing are daily locked up for minimum twenty-one-hour a day; few de facto live in their own cell hardly ever exiting it by their own free will; few do not use their right to go to the yard or to do rehab due either to their mental condition or to another reason. the role of ‘wing manager officer’ in that wing is organised in four shifts and is normally performed by a first level officer. shifts are organised as follow: the first shift ( - ), the second ( - ), the third ( - ), and, lastly, the night however, paradoxically, it has been discovered during the interviews with officers that new base grade officers recruitment scheme (in italian, concorso pubblico) then prescribed, in practice, that in order to have a chance to be admitted, one has first to do a period in the army and possibly have experienced at least a military missions abroad. shift ( - ). only the night shift is not overlapping with the previous and/or the following ones. the officers doing 'the second [shift]' in any particular wing, in fact, must arrive one hour before his or her colleague ends his or her own duty leaving the 'posto di servizio'. of course no one could never be authorised to leave his own ‘posto di servizio’ unattended; doing so would result, a senior officer said, in a prison officer special crime. a wing manager should not leave the wing even in case of an alarm; this is a personal decision, though...if i hear a nurse screaming…i will leave it…and will not consider the personal consequence. there are laws and there is logic (in italian, buon senso). you always need to do what you feel more comfortable with, without thinking too much to the consequences (field note). when the incoming officer starts his shift, however, he do not have to head directly towards the wing; rather, the officer is allowed to have lunch first, and this would normally happen at the canteen where two professional cook work full time making quite good food most of the time. only after lunch officers should move on to the facility, pass by the superior's office, the all-wing manager, to start their new working shift on the landing. similarly, before the second shift stops, those doing the third would arrive at the canteen, having their dinner, then moving on to their superior and eventually to the wing to actually start working. the role of the wing manger is clearly expressed by the asylum commander’s quote below: well…obviously we have our ‘modello a’ a document which specify each officer’s role and shift in any area of the custodial institution [either asylum or prison]. inside ‘his’ wing the officer is…for example the officer responsible of the security [the one we described doing coercion] …first of all he has to guarantee order and security within his area, hasn’t he? then he has to guaranty the prisoner’s life and safety; therefore, if any inmate is agitated, he has to call his boss who calls his other boss; then, eventually, if necessary, the security manager would go upstairs to understand why is the prisoner agitated [by agitated he seem to intend something like destroying a cell or fighting with a room-mate seriously] if anybody is unable to solve the issue talking with the person, he will climb the hierarchy until the [asylum or prison local commander]… the main function of the prison officer who patrols the wing is to guarantee order and security insight the custodial facility as well as guaranteeing a safe access to everybody to the available activities. (video recorded semi-structured interview with local asylum commander). in yet another conversation one officer clarifies that the role described by the commander, as it was previously remembered, is called ‘wing manager’ (responsabile di sezione): 'his duty is to watch over and observe the patients [and inmate more generally] on the ward [the wing name in the asylum] or wing.' the wing manager officer: doing ‘proper’ work the officer doing 'proper work' (the manager of the wing) starting his 'first [shift]' ( - ) would normally arrive upstairs just a couple of minutes before seven; he would be just in time to be updated by his fellow colleague who must give him the keys and tell him about how many prisoners are locked in, whether any particular order has been issued by the commander, any particular prisoner 's record has been updated by the doctors or any 'ticket' (in italian, rapporto disciplinare) has been issued at all by the fellow officer during the night, and if any, for what reason it had occurred. occasionally, these procedures might be time consuming; yet, they would often be over simplified even after 'a war nights', becoming a simple informal routinize exchange like the following. it's eight to seven; i am sitting in the officers' box on the closed wing. the ‘officers’ box’ is located just in front of the cell number where the prisoner ryan (not the real name), the 'officer's enemy', is smoking a cigarette hanging on his cell's barred door just wearing a light blue slip and white socks. the young green-eyed officer is now at the end of the wing entering into the infirmary. suddenly a fellow officer arrives at the box and, a bit surprised about me by using the word 'ward' and 'patients' instead of those of wing and inmates, he subtly stressed the fact that the asylum should theoretically be, and work like, a hospital. being alone in there so early in the morning, asked me whether or not i knew where was his colleague. i indicated him that his colleague was in the infirmary at the end of the wing; the officer sat down on a chair next to me and had a small talk with me waiting for his colleague to arrive. he suddenly stood up and checked whether all the keys where in the key locker next to the toilette where they were supposed to be, then he sat down again watching the morning news on tv. eventually, the other officer arrived from the infirmary; the officer sitting next to me smiled to his colleagues; 'ciao marco, is everything fine here? has anything happened tonight?' his fellow officer replied: 'it's all right giorgio, no worries. they are thirty-five; i really need some sleep now! it has been a terrible night...please just read it [the register]'. 'ok, have a good sleep then, and forget it all!''. marco exited the wing and went downstairs. eventually, giorgio became the 'boss' of the wing (field note). occasionally, however, a very formal officer would require all the formal procedures to occur ritualistically (he would say ‘properly’) and that may require more than ten minutes to occur properly. during my ethnography i never witnessed any officer arriving late on duty. arriving late on the wing, not only creates organizational problem, but, more importantly, is one of the worst informal offences (in italian, sgarbo) one could do to a fellow colleague finishing his shift and would not be tolerated by the fellow officer. stories about officers arriving late are only told to denigrate someone explaining how little that person is. i did only witness a prisoner justified late arrival, however. one night, at about eleven, i was with the capo posto (all-wing manager) downstairs when the inmate phoned him. he was calling to say that the bus he was using to return to prison had a problem and that he was able to demonstrate it. i felt the stress that this unusual circumstance produced in those working downstairs – actually watching tv at that moment of the night ( p.m.) – who immediately started to do paper work and to make some phone-calls required by the situation to inform the local police station. starting a working at the prison or at the asylum starting a new day at work on a prison's wing can be particularly heavy for those who are tired to do their job; it may mean starting a shift in which one would only or mainly be interacting with 'camosci' (prisoners). at the asylum, however, the situation would be quite different and almost any officer starting his own shift would firstly go to meet and greet his colleague 'in white' working at the wing's infirmary; then, he would take a coffee with him or her and other staff from the wing (and beyond) in the infirmary while updating each other on work issues as well as doing small talk; lastly, he would return to his box starting his 'new day doing time', yet in company of other staff, not only of prisoners. before entering his ‘box’ the prison officer would probably neither answer, nor consider, any of the multiple requests prisoners would be whispering, asking, or screaming to him by saying to prisoners to wait until he would be 'ready to start [working]'. once i heard an officer – smiling to me – saying to a prisoner he was still a 'ghost' and not actually on duty yet, requesting, in other words, that particular prisoner to wait a minute before to be considered. the officer doing 'the first' shift could be told by his colleague finishing 'the night[shift]' that a few prisoners were already out of their own cells; that might have occurred for a bunch of different reasons and would also result on the wing register each officer must fill in continuously in which all prisoners' movements must be clearly reported dynamically: they would write, still on paper with a pen, something like 'exit: . ; name: prisoner giorgio bianchi (not a real prisoner name there); [to work in the] kitchen' and all the other movement within the institution by which a prisoner is required to exit the wing; that register is also used to register the movement of any prisoner exiting the wing to go to the yard for exercise, to the lawyer downstairs, to the dentist on the ground floor and so on . the 'wing manager' officer is in fact responsible for the movement of all inmates from the wing to the outside of the wing and must report it on the register accordingly any time each and any prisoner enters into or exits from the wing. a 'wing's cells board' instead hangs inside the officers box and visually represent the 'structural' situation hic at nunc in the wing: it particularly displays where any prisoner is 'housed', in which cell he must be locked in and is not changed as frequently as the dynamic register above. on the wing cell board, one or two names of prisoners are placed next to the corresponding cell (from cell to cell ). that is the structural configuration of the wing population at any particular time; it does not change any time any inmates enter or exit the wing to perform his normal routinary tasks. its configuration only changes every time a newcomer enters a new cell, a prisoner from the wing is re-moved to another cell within or outside the wing, goes outside the institution temporarily (to the hospital or to court) or permanently (transferred to another institution, returns to liberty), in case of a prisoner is put on a restraint-bed (at least until one was yet there), or in case of a prisoner's death. each inmates' label – with the prisoner’s surname typed or hand-written on it – is positioned either, in one of the cells numbered from to , or in another position provided in the board (constraint-bed, hospital, process, and so on). filling in the board was a task performed without particular emphasis by the wing officer; it was just routine. yet, occasionally problems have emerged when a new foreigner inmate with a 'strange' name was allocated in one of the cells. the decision of where to put him was a medical one, mainly based on organizational issues, suicidal risks, or on a judge order in case of judiciary isolation; usually, doctor would ask for an informal opinion to the officers as well. once one doctor told me ‘they really know how prisoners are; and anyway, it is better to have on our side giving them some consideration’ (field note). the officer, however, had to write the name on their board and this was often difficult because the hand-writing process was frequently done without particular attention; normally officers would call the registration office (in italian, ufficio matricola) to check the correct name spelling, particularly when foreign nationals were at stake; yet sometimes they did not care and sometimes names were simply written wrongly. in few occasion the officer wrote the name wrongly and did not mind too much about it until someone else realised the mistake and corrected it accordingly; occasionally, after a new foreigner arrived officers and nurses started having fun of the name or creating a nickname for him joking either on his appearance or on the sound of his name, like it would occur in many other context among peers; particularly so whenever the foreign national's name could be sexualised in a way or another. often, then, the nickname was used with the patient who would accept it docilely with a smile of circumstance. i saw only few prisoners resisting this process and their resistance was neither appreciated, nor understood by the staff. in a couple of occasions the nickname was put next to the cell’s door, for a short period, as if it was true to joke with colleagues or other staff passing by. one officer once even put the nickname in the name label next to the door and the psychiatrist laughed loudly when he realised it. some stories were shared with me in different occasions about ‘funny jokes’ performed with inmate’s name ‘back then’. something completely different have occurred as well. one prisoner pretended to have a different identity than his real one. he did not accept his own identity pretending to be called differently instead. the institution accepted informally his version of the story and allowed him to change his own name on his own cell's label accordingly and he really appreciated it. he was not the guy who killed both his parents like the sentence declared. he would simply pretend to be joseph, a turkish professor who, due to the condition of incarceration was unable to speak turk any more, while speaking italian perfectly though. during the officers’ morning meeting (in italian, conferenza di servizio) starting at . - in the officer's meeting room next to the bar where two officers working as bar tenders would be making one espresso after the other – the officer in charge for rehabilitation would be announced (see below). by then, the officer doing night shift on the wing could already have opened the cells’ doors to the inmates working in the kitchen who were supposed to start their job just after . . around . a.m., the officer working on the prison's wing let those inmates working as cleaner to enter the wing to clean the wing's floor, and controls the process from near-by. in the asylum, inmates would bring the breakfast trolleys from the kitchen to the first-block gate (the entrance of the detention wing) where paramedics would collect them to start, immediately after, the distribution on the wings: tea or coffee and milk and some biscuits with it are served only; there is no other option but the old-style italian traditional breakfast . the distribution of the other two daily meals, lunch and dinner (made of three dishes plus fruit), are organised and performed in a similar way. inmates must repeatedly reused disposable plastic boards and cutlery before to have new despite the fact that on gennuary, st , on a total italian prison population of . persons ( . females), . are foreign nationals. https://www.giustizia.it/giustizia/it/mg_ _ _ .wp?previsiouspage=mg_ _ &contentid=sst . ones for budgetary reasons. this is not strange knowing that in different occasions, for some days, toilet paper was unavailable either to inmate, or to staff. being used to it, prisoners had not even protested. checking inmates’ incompatibility with one another at about nine o' clock in the morning, any inmates can be sent to the yard or to other recreational, working (if available) or educational activities. this is the first large scale routinary operation that the wing manager officer doing the first shift must organise, enforce and control in the morning. inmates who do not intend to go to the yards (andare all'aria) are allowed to stay inside their own cells but there is a clear informal accord that they will not 'stress staff with unnecessary requests' over the next two hours. all non-urgent requests will be taken into consideration only afterwards, when all inmates would be back from the yard and in their cells again. it is an officer's responsibility, before sending any inmate to the yard, to check whether or not any particularly critical situation is known. the worst critical situation for moving inmates together is any 'prisoners' incompatibility' with one another; the officer must check, in other words, whether or not any inmate has a 'ban on meeting' (divieto d'incontro) for whatsoever reason with any other inmate who is supposed to go to the same yard or who could be met on the way to the yard. failing to consider this kind of ban seriously or avoiding to do the checks accordingly, could easily lead to a critical event. normally, in fact, these ban are the disciplinary 'stick' of a previously occurred serious fight between two or more particular prisoners and are ‘removed’ as soon as possible whenever the situation gets even slightly better. if the ban is between one prisoner and another that could be likely found on the way to the yard (i.e. passing next to an open wing), one officer would move ahead to the group going to the yard and, if necessary, order the prisoner 'in the way' to ‘leave the area’ temporarily. if the ban is between particular inmates that would go to the same yard, only one inmate would be allowed to go to the yard in the morning while another would remain in his cell and go to the yard later on. (each prisoner who cannot go to the yard with other always has the possibility to go alone to a smaller yard). each single time in which more 'bans' are contemporarily in the picture, it may cause an organizational issue or at least some extra work given the very few human resources available. in fact, the right to go to the yards must be guaranteed to any prisoner with only very limited and lawfully regulated exceptions. each prisoner has the right to go to the yard twice a day, if necessary, isolated from other fellow inmates. yet, there is neither enough personnel to escort safely all these isolated inmates, nor enough individual yards in which to put those inmates that must do exercise alone. the results of the scarce resources available is the unintended but rational consequence of reducing the ban of meeting to a minimum. this clearly, to a lesser or greater extent jeopardize the prisoners’ and officers’ safety during transfer and recreation. checking and organising the transfer, negotiating with prisoners about who would go first and where, and preparing the groups of inmates to be escorted to the yards by fellow officers is the duty of the officer managing the wing and is not an easy task at all. nor it comes without responsibilities. escorting particular prisoners to particular yards all prisoners, as was mentioned above, have a right to do their recreation on the yard twice daily for about two hours each time; yet, different prisoners are allowed to do different types of recreation on the yard. there are three types of ways to be 'out there' on the yard. firstly, prisoners in judiciary, sanitary or disciplinary isolation must stay alone on an empty concrete yard each, theoretically, controlled by one officer. secondly, prisoners on basic regime because of their critical and unpredictable behaviour, and decompensated patients must go to west-yard (passeggio ovest), a concrete empty standard 'big' yard where a small group of maximum eight to ten prisoners can 'mind their own business' as well as clarify disputes, often fighting with one another, more or less severely. i saw many fights occurring there; blood and broken teeth are business as usual down there. normally, it is not granted to any inmates the right to go back to the wing before the yard time in the west-yard is finishes unless all agree to return to the wing before and the officer accept it; the officer escorting the group would clarify to the prisoners that rule each and every time before to go downstairs to the yard. returning back from the yard to the wing before the time is finished is usually granted any time the request is 'collectively decided by all prisoners on the yard and requested clearly to the officer without any singular complain'; in practice, this normally means that all prisoners must return to the wing whenever the prisoner higher in the prison hierarchy on the wing decides to go upstairs. pretending to go upstairs finishing prematurely the exercise at the yard can also be an occasion to test or publicly assert one’s dominance on the fellow inmates on wing. at the closed wing, normally a well-known ‘critical’ prisoner or an alleged mafia's boss is normally considered to be ruling the wing. lastly, the third usual way to do yard time is going to the recreational wing; a few prisoners kept in the forensic hospital closed wing are allowed to the recreational wing. there, a bar, an open library, theatre activities and another 'open' yard are freely accessible, normally to those inmates that have to be tested before to be transferred to an open wing ore who are already living on such open wings. coercive routines: counting, lock ups and checking lock bolts and bars at each shift change, a group of internal officers must count the inmates actually locked up in their cells or present in any particular wing or area of the facility. in fact, counting the inmates should be performed at least six time a day ( , , , , , and ). this is done by each particular officer in a particular way. the majority, do it very professionally and are fully aware of the stress that this security procedure would repeatedly cause to those vulnerable inmates being counted (the stressfulness of this procedure was pointed out to me by both one senior officer and some inmates); others, do it using un-polite manners – or treat inmates unprofessionally indeed – while counting them causing sorrow and stress. normally, entering the wing the officer would shout: 'conta!' urging inmate either to be visible in the cell or to enter the cell temporarily for ‘la conta’. although, in principle, all inmates are required to move to the cell's door or to be visible, some officers are more flexible than others doing it. in the asylum, some inmates would do what they are required to; others would not even be aware of what's happening and would continue to mind their own business or acting-out like nothing happened. the officer would start from the cell backwards to the cell or vice versa, occasionally doing small talk with the kept but consistently refusing to give them any information or respond to any enquiry that might arise while counting. any staff i escorted during counting took his duty very seriously and did not go to the next cell until he was really sure that the person was there, and more importantly, still alive. one officer explained me: we are supposed to go back and forth continuously in the wing [to check inmates]. that's our duty; that was what we were told to do when i began working in prison. my boss would come to my ‘box’ suddenly checking my chair with his hand to feel if i had been working or sitting all the time. this work was taken very seriously years ago. now, you saw it… how they work [the young officers] ...now we have to check whether prisoners are alive at least at any shift change [exaggerating to emphasise the difference and talking a bit rhetorically about the old good times]. remember that for any officer, to find a cold dead body is a serious problem that any friendly doctor, nor any lovely nurse, could ever cover up!!!...it must be at least a bit warm still...otherwise it would be a big shit! (field note). this kind of conversations were quite normal on the wing; although initially chocking, by staying there i became quite anesthetised. possibly, at the beginning of the ethnography, my presence might have effected those dialogues in a way or another. it was really difficult to comprehend how cynic officers could be talking about other persons’ life and death in respect to their own accountability or, better, unaccountability and daily routines. checking the bars, is another security check that must be performed early in the morning and then time and again during the hours; yet, only high security prisoners (in italian, alta sicurezza; as , as and as and bis) cells' and doors’ bars must be checked at given times. each time any officer arrived at the wing to check bars, he would hold an iron ‘baton’ [not a real baton! an instrument only used to this purposes and locked up downstairs in a locker otherwise] on his hand and would occasionally joke about it with very low ranking convicts. 'put your dirty hands off of me or i will break your head in two' could be an example of these 'jokes' an officer could do with a friendly docile inmates, smiling and often receiving a smile in return. checking the bars is the other operation – with counting – i saw performed consistently, almost in the same way by each officer and yet, again, with different levels of empathy. i observed during my ethnography, each and every time with no exception at all. counting inmates and checking the bars were considered to be 'proper officers’ job' by which officer avoided escapes and, more importantly, clearly signalled and enforced their own role on prisoners and prisoners’ body while enforcing coercion, thereby concurrently, displaying their own authority. in order to checking the bars, a prison officer would let the prisoner out of the cell with a colleagues of his escorting the ‘free’ prisoner, then enter the cell and start checking the bars with a precise set of seemingly-standard movement. firstly, he would bang his 'baton' vertically form the top to the bottom rattling three times to test all the horizontal bars; then he would check the vertical bars by banging the 'baton' from the left to the right and from the right to the left, time and again, for two times or so. once 'la battitura' was finished the officer would exit the cell, and tell the inmate that everything was ok and then move to the next cell. sometimes a ‘joke’ on escaping would be performed by either the officer or the prisoner; sometimes a rhetoric docile smile exchange would occur; other times, some resentment was displayed by the prisoners to the officers doing it. some inmates told me that they hated that procedure (as well as counting) because they felt to be untrusted and humiliated by the officers doing it. it was clearly a strong symbolic way to enforce domination and coercion from one side to the other a few times a day. however, despite the terrible psychological effects that might have on prisoners, those inmates whose doors were checked, really had a very serious criminal curricula and that was simply a lawful standard control the institution must do by law. that duty was mandatory and was normally performed very professionally. one experienced officer told me in an interview that he knew very well how to hurt inmates ‘without doing nothing wrong [meaning nothing unlawful] when closing the cell door or checking bars. it all depends on how you do it; you can really make them suffer seriously…you can destroy them [psychologically] if you only wish to; you can do that simply by closing their barred door in a way or another. you can closed it politely, normally, or you can bang it disrespectfully. they get it clearly; i know they do (video recorded interview with an officer). the introduction of the ‘rehab officer’ and the italian national health service 'one prison officer per wing has always been enough', stated a senior officer during an interview. in the s, the national health service has enter the prison and has started to manage the prisons medical and paramedical service just like it has always been done with all other persons ‘out there’. by doing so, the prison internal organization has been challenged significantly by the introduction of a plethora of profession 'that hardly ever existed before' mainly producing beneficial effects in prisoners' opinion; much less so in officers' one. officers tended to be quite critical with the new situation, though. their own ‘freedom’ had suddenly disappeared when ‘those in white’ entered the wing. ‘this new organization had dramatically challenged the officer's job and authority over prisoners on the wing; therefore a complete reorganization of the wing became necessary’, said the local commander in a video-recorded interview. officers working as wing's responsible started to complain and to resist this changes and did not accept to continue working as if nothing had happened with people entering and exiting the institution ‘at their will'. luckily enough, due to the entrance of the italian national health system (in italian, servizio sanitaria nazionale) some personnel redundancy occurred. therefore, some prison officers became available internally to be hired for other duties. as a consequence the prison work on the wing had been reorganised completely. since the nhs is in the picture, two officers at a time, and not one any more, started to work on the wing concurrently during the 'busy hours' from eight o' clock in the morning to nine o' clock in the evening. one particular role description was introduced for each one of the two officers’ role; this re- organization worked smoothly and efficiently said the commander. in fact, one officer was the responsible of the wing; the other was the responsible of the rehabilitation: in officers' words, one would do 'proper police work', the other would not; yet, this double task has long theoretically been clearly part of the prison officer's duty already since the penitentiary rules ( ) that are now forty-year old. however, rehabilitation is not clearly embedded in officers’ cultures yet; the heavy working environment and prison environmental working condition probably do not help officer to develop and/or accept a new attitude that now definitely includes rehabilitation in the picture. at higher level in the hierarchy, however, a change has clearly occurred and i met a lot of senior officers (level and above) – not to speak of area managers and governors – who showed a progressive attitude just like those displayed by other european governors i have met in the netherlands, finland so far. all this efforts at the top of the hierarchy do not seem to spill easily onto the day-to-day routines many officers enforce on the wing coercively, though. the wing manager officer was mainly busy, with, and focused on, the issue of order and security on the wing and, particularly, of controlling all prisoners’ movement from the wing toward the outside or vice versa; the other officer, the responsible of rehabilitation, was instead responsible for rehabilitation and was mainly busy with escorting inmates from their locked cells to other areas on the wing such as the infirmary, the 'public' showers or any other location within the boundary of the wing always taking into account the wing manager officer’s instructions. although, that rehabilitative task was paramount in the asylum, the agent still had to secure safety to medical and paramedical personnel working on the wing when helping them doing rehab. the security manager officer in the asylum also had to collaborate to the rehabilitation programs. in other words, there was at least both some proper police work and some 'rehab' in either roles. during the ethnography, it became clear that for ‘first line’ officers, each one of the two officer’s roles on the wing had its pros and cons; although doing proper policing was regarded as a more respectable, 'powerful', and masculine position then 'doing' rehab by most of the internal officers, its cons were clearly stressed too. doing proper work did come with more responsibility and much less freedom of movement; no one officer managing the wing was allowed by any means to exit the wing. no one officer responsible of the wing would dare to exit the wing 'informally', without asking authorization 'downstairs' [which would hardly ever be grated and only for very serious reason; a freedom that other officers in many another roles would perform much more easily. furthermore, rehabilitation was often regarded as feminine, not adapted to a male officers' role; some said something like ‘it’s for civilians, and not for a men in uniform, isn’t it? ’ few officers would consistently prefer and ask to perform rehab, though, because they had ether started to dislike that masculine and powerful position, or started to appreciate the occasion to interact frequently with paramedical personnel and doing something different than ‘just policing’, thereby distancing them self for a moment from being a proper officer. however, in the local commander’s words, the officer doing rehabilitation ‘is there to help staff…medical and paramedical staff; he is the one who works, together with medical and paramedical staff, in all the activities occurring within the ward; to unlock a inmate to let him go to the [ward] infirmary is a rehabilitation officer's duty; to clean the cells...to let a prisoner out of the cell to let others to clean it, it's his duty in cooperation with medical and paramedical staff’(field note). during field work i met a few officer on the wing that started to work more in the external team or preferred to do rehab later on. the common narrative among those last officers was that they had seen and ‘done’ too much and needed to calm down and take it easier for a while: a kind of the worrier’s relax. one officer has displayed a very rehabilitative attitude and said he was enjoying ‘doing’ rehab very much; he then moved to the external group because by doing so, he thought to be able to better take distance from all the issues that usually occur inside, and by doing so, to better live his life outside forgetting, once at home, all those terrible prisoners’ stories and scenes seen inside. by the same token, policing the prison wing was considered by the majority of those doing it (i have talked to) as much more rewarding and ‘proper policing’ than doing it on the asylum’s ward, doing rehab was perceived as something very different. as one clearly put it, ‘if i wanted to be a nurse i would wear a white jacket, not a blue uniform, wouldn’t i? ’ another, told me that doing rehab he felt frustrated. he had become a prison officer after two years in iraq as soldier not to see and old men taking a shower (the duty he was busy with while he was talking to me). he clearly disliked the fact that, in his view, he was just asked to be a caregiver and not a prison officer forgetting the complexity of the role in which any prison officer is imbued continuously at any time day in day out. he could not stand it at all. moreover, he did not get why prisoners should be treated so nicely, but this was his particular personal opinion which was in deep contrast with the opinion of others. he added that ‘they are criminal after all’, and should be treated accordingly'. unfortunately, in that occasion as well as in the following days he has always refused to explain what he meant by ‘treated accordingly'. officer doing 'rehab' at eight o' clock in the morning one officer would start the first of the two shifts of 'rehabilitation' ( - ; - ). after breakfast, around a.m., the prisoners’ written form (in italian, domandina) previously written and 'posted' in the wing's post box would be proceeded and sent downstairs for the authorization needed: almost any prisoner's request must be processed via a written form: first, any request of any 'special' item, kitchen tool or food ingredient excluded from the 'normal' availability on the wing (such as a cd player, a large plastic spoon or a particular kind of meat and so on); second, a request of a book from the library or the access permit to go to the same library; third, any request of an appointment with any staff from the officer chain of command, or the medical and paramedical staff, and so on. prisoners can almost ask nothing without filling in a request form properly: this deeply impact on prisoners' infantilisation process, a process widely known in the prison literature, as well as on the foreign national prisoners who cannot do it alone and therefore need the help of fellow italian prisoners, and this impact on their position in the prisoners’ power dynamic. inmate can also request to see the governor and the area managers if they wish to. of course, requests to meet anyone at a high level of the hierarchy must be clearly motivated and, anyway, those requests are not likely to be successful; prisoners know that the best way to be heard is to 'create problems'; yet, that is costly. at any time in the morning, unpredictably, one inmate working as factotum would suddenly appear on the wing to let inmate 'do the shopping' via the factotum prisoner requesting those extra products each prisoner may need for his own personal care (soap, foam, creams, razors), the 'housekeeping', and more importantly, for the preparation of meals. each inmate, in fact can buy a camping gas to cook his own food and to make coffee with his own moka machine. in italy good food and good coffee are very well evaluated and play a crucial role in the 'underworld' informal economy, and are also used as a welcoming ritual to any new welcomed cell-mate. the use of camping gas is often contested by a bunch of officer who consider it dangerous both for their own security and for the wing's order and security as such; in fact, that device is also often used as drug (breathing the butane gas contained in the gas bottle by putting the bottle and the head in a plastic bag is a common drug there) or as means to commit suicide. occasionally, gas bottles has been used as a weapon to assault staff or fellow inmates by producing a flame to hit the victim thereby producing serious wounds and burns (by inflaming the high-pressure gas exiting the bottle once disconnected from the camping gas); this never occurred during the ethnography. during the hours of exercise at 'yard' in which most prisoners are off the wings, there is a strangely calmer and quieter atmosphere than usual at the close wing, occasionally interspersed by people screaming, strange 'animal sounds' [as one officer called it], noisy requests or banging doors. during that period the rehabilitation officer is normally busy to escort those inmates cleaning some of the empty rooms and to open and close inmates going back and forth to the wing’s infirmary. sometimes, particularly when any ‘good shift’ would occur, the officer managing the wing would 'help' his colleague performing rehab with him without caring to much about his face and performing his own role properly; in other occasions, he would stay quiet, or 'invisible', inside his box minding his own business, pretending to be busy doing paperwork, while doing them, or reading a car weekly paper, famiglia cristiana or simply watching tv. now and then he would pass by the infirmary for a coffee or a chat, normally pretending being busy doing security (at least in my presence); occasionally he would be ordered to help doing security during a medical visit of a particularly dangerous inmate. doing frustrating duties 'officers' job is not always about actions like the officers’ job shown on tv' said one rookie officers [meaning an unexperienced one] a bit disappointed while being busy doing something that could be described as the opposite of what they meant by doing proper police work: helping a nurse to take care of a psychiatric patient without legs on a wheel chair that should take a shower and did not cooperate that much. other frustrating duties, that few officers would define rewarding were common inside, rehab officers would mainly perform those kind of neglected duties: patrolling prisoners cleaning a cell or another room, escorting prisoners to the doctor and so on. these frustrating duties where more commonly required at the asylum than in prison for the particular severe psychiatric conditions of few patients. this could be predictable; at the asylum, in fact, due to their alleged or actual psychiatric condition, prisoners are more likely to behave unpredictably than in prison and, therefore, some prisoners need be escorted wherever they need to go. some prisoners are really difficultly manageable and seem to be neither reactive to any treatment, nor to any threat of the use-of-force. some just want to be considered constantly and this is highly problematic indeed in an institution where there is an alleged shortage in personnel. occasionally, even the local commander has been required to be the personal escort to a patient that was considered to behave childishly and pretended the commander company. once, i have seen for a few days one inmate repeatedly walking around the landing nearby the commander's officer just in front to the first-block gate (infra, chapter ) hand in hand with the commander. i was really surprised by that scene that i had never seen before anywhere as yet; the commander told me that it became clear that with such a prisoners, that was supposed to stay there only for a few days, managing him in that way was the only and cheaper practicable way to deal with the situation efficiently. he is really extremely difficult to manage...fortunately they are not all like that. it's so difficult when you have to deal with such a prisoner that you do not know what to do any more. at the end, you take away too much energy off from the other calmer prisoner...because you need to concentrate on him, calm him down, thereby avoiding greater problems; yet, that's completely unfair! it’s unfair for the fit ones who behave properly (interview with senior officer). then, the commander explained me that after the second cell was completely destroyed by the childish prisoner, he started to put a lot of energy on that guy waiting for his transfer that fortunately arrived in just a few days. that prisoner was indifferent to any threat and the use of coercion and, on the contrary, was very prone to conflict indeed; in fact he was continually looking for trouble with both prison officers and fellow inmates. he just pretended too much attention and consideration in many officers’ opinion. he was described to me as one among the 'worst nightmare' that the commander had experience as yet. by behaving like that, the prisoner had simply destroyed all routines and internal organization procedures, said the officer. during his short stay, that wing was ruled mainly to keep him calm. furthermore, that situation had produced a set of unintended consequences and other critical events that were treated accordingly. however, some ‘different’ officers who tried to avoid action as much as possible appreciated those frustrating duties and often performed them seriously and with humanity. prisoners 'helping' officers it is interesting to note that one officer who explained me the organization of the asylum wing concluded by adding that along with the two officers, there existed three to four prisoners working daily to clean the wing, thereby, somehow almost describing those inmates as part of the staff: one was the so called generic worker of the wing (in italian, lavorante generale sezione) whose duty was to clean the corridor and to do whatever he was told to by the any of the two officers on the wing, for example to clean the prison officer's boot (on the wing they called it with the english word ‘box’) or to empty the wing garbage bins. other two to three prisoners would work simultaneously to clean the cells (in italian, lavoranti celle), preferably of those inmates who were elsewhere at that particular time. on daily basis, prisoners must clean their own cell alone. some prisoners, however, must be helped to do it or are totally unable to do it for any reason or do not wish to. a few rarely accept their cell to be cleaned at all without using tools of influence, often the symbolic threat of the use-of-force (infra, chapter ). whenever an inmate is either not allowed to exit the room, or is unwilling to do so, then, the prisoner is ordered by the officer to lay still on the bed and not to disturb his fellow inmates that, after all, are helping him to live in a better and healthier environment. each time officers and inmates are cleaning the wing and the cells crisis occurred very rarely; in these circumstances, prisoners working on the wing are often coming from other wings and are therefore a good channel of communication for inmates locked up in the closed wing; therefore, cleaners are always highly considered and respected among their peers, at least instrumentally. they are also those who are informally allowed by the custodial staff to do things differently without following the normal path and procedures prescribed 'by the book' resolving 'little problems' to those locked in that theoretically would require a longer formal path; inmates, in fact, have to write a form for any little thing they would need and afterword the form would be processes and an official decision taken. strangely enough, inmate also have to ask to get one of those paper forms any time they need it. the can only get one or exceptionally two at a time. the role of prisoners working as cleaner on the wing would deserve a study by itself. three persons cleaning a room can take up to twenty minutes to do it properly. yet, very few cleaning material is available; sometimes, even toilet paper is missing in the prison warehouse for budgetary reasons, i suppose, let alone professional cleaning products, tools or machines. the rooms’ condition were always very critical; like in many italian prisons i have visited so far, the situation would need significant improvements to become quasi-decent. this problem should be urgently addressed, at least in the asylum, since that psychiatric ‘hospital’ cannot be called hospital at all and that emerged clearly also in the interview with the custodial and medical staff. in each cell, of the ex-prison transformed into an asylum, prisoners are obliged to sleep on an old iron orange bed, just an orange prison bed usually used in almost all italian institutions, on rotten and worn-out mattresses that are terribly stinky and dirty. no proper hospital bed, let alone a cell designed for persons with particular physical invalidity, was given to any inmate. one super clean and new one was put instead in front of the infirmary downstairs where some outsider might be allowed to enter for a reason or another. during my stay, i met one person who had been there for few years; he had no legs anymore because he had lost them trying to commit suicide under a train without succeeding. another prisoner lived on a wheel chair and died in custody (or just outside going to the hospital); yet, another one had a semi paralysis and could hardly walk and often fell down on the floor because his stinking cell was totally inadequate for his (as well for many others) health problem. concerning the maintenance, i personally witnessed that during almost three long years nothing was done against the unbelievable level of mouldy walls and ceiling in any of cell's toilet and in the showers which condition had already publicly been denounced by a parliamentary commission with a well- known video that can still be found on youtube . bleach was never used, let alone paint. staff did their very best to have a healthier environment and paid personally for this unfavourable working environment occasionally even buying products at least for their own use. the issue of a decency agenda should be sooner or later be addressed in italy too. wing manager officer’s strategy: remarking the 'old times autonomy' versus displaying deference after the reform that introduced the national health care staff into the custodial institutions – as said above – officers stopped being alone on the wing and begun having medical staff with them day in day out night and day. medical staff depended from the ministry of health and its regional department and local authorities and have introduced some form of accountability; in fact, being independent from the ministry of justice, they have been less prone to cover ups wrongdoings or unprofessional officers; yet, this has in practice hardly ever happened. the so-calle marino commission (in italian, commissione marino) (commissione parlamentare d'inchiesta sull'efficacia e l'efficienza del servizio sanitario nazionale: relazione sulle condizioni di vita e di cura all'interno degli ospedali pscichiatrici giudiziari; relatori: sen. michelle saccomanno and sen. daniele bosone, approved by the commissione on the - - ). a wing manager, particularly at the asylum where medical staff is also on duty / , lost at least part of his authority on the wing: at least one nurse was also always there. officers working on the landing neither have they appreciated this innovation very much at that time, nor do they seem to appreciate it nowadays: by not being alone anymore on the wing, officers had to stop ruling the wing by 'their own free will' as one officer told me bluntly. they had to start to negotiate their own authority with other embedding the medical power. during their shift, i have observed one main strategy to symbolically balance their loss of authority and publicly claiming their pretended power. this would happen by referring to a mythical old time autonomy (or free will) that would characterise a previous time in the past in which they were the ‘boss’ of the wing. during almost all interactions among the wing manager (the officer patrolling the wing) and either custodial or non-custodial staff, the wing manager would display his independence and remark autonomy from all other staff on the wing and even, to a certain degree, from his superordinate. either, his direct superior based downstairs with whom the officer would normally speak on the phone, or the paramedical personnel with whom he would continuously interact face to face on the wing, would have to wait to get a service done by the wing manager, if not really urgent (in the officer own understanding). by doing so, he would perform theatrically his pretended 'old time autonomy' and free will, every time the occasion would occur. he did it, mainly by organising his duties 'freely', 'independently' and moving back and forth authoritatively on the wing following his own schedule often unknown to other staff on the wing; he would 'legitimately' resist external requests coming from his 'boss' or from the medical staff by saying or showing that 'i have something more important to do first; i am busy, i will come asap'. with some particular officers this happened more frequently than with other; yet, it was a recurrent behaviour among staff performing that particular role. some officers, more masculine than others, used this strategy of remarking the 'old time autonomy' more often or more openly if in company of the female nurses: hyper masculinity there was sometimes emphasised by some hyper feminine nurses and workers who did engage in some kind of rhetorical flirtation with one-another. by doing so, resisting orders and delaying colleagues requests, officers would theatrically emphasise their own authority and power to rule the wing and to manage their own time thereby showing their possibility to do their own time nicely, 'minding their own business' and at the same time, taking their time to be a gentleman with those female colleagues who showed to appreciate it and 'play the flirting game'. to be honest, though, remarking the 'old times autonomy' was never performed completely unfairly, delaying crucial activities or obstructing others' duties significantly, at least in my own perception, and it is not clear to what extent the researcher's presence influenced the officers doing so. it is also not clear to what extent it was performed strategically or somehow traditionally; it simply seemed to be a symbolic game; afterwards, of course, things must go on. it goes without saying, that by doing so, minor delayed were caused unnecessarily; occasionally, even when the duty requested were said to be 'urgent!’ if the officer on duty would not agree with the definition of urgency at stake, any request could be delayed a bit accordingly, just to show one’s own power and play his own masculinity in front of his public on the landing. by shaping his own time schedule at his will, mainly following his own needs, he would symbolically maintain the 'old autonomy' and exert power that allegedly existed before the national health care entered into the picture. officers can resist orders or particular situation also by ‘becoming sick’; this is a particularly critical point as pietro buffa argued in prigioni: amministrare la sofferenza ( b). in the particular occasion just described above, in fact, in which that particularly heavy prisoner was asking a lot of energy to be treated. as one officer told the researcher, nine over fifteen officer were contemporarily ‘sick’ blocking by doing so all the prisoners activities. afterwards, one day later, the psychiatric assessment was prematurely closed attesting that the prisoner could stay in prison [and the prisoner was sent back to his previous institution from where he came from] (ethnographic interview with one officer). writing a report or filling in a register were always an easily justifiable duty that any officer could employ symbolically to perform his own 'old times autonomy' publicly on the wing. by doing so, showing attachment to his own duties, one officer could both, publicly resist his display of subordination to his superior, to fellow staff and inmates on the wing, and, concurrently, avoiding to be formally disrespectful – or worst insubordinate – to those above him in the chain of command and/or to the medical staff thereby avoiding disciplinary consequences. neither, all prison officers would perform the 'old times autonomy', nor would they perform it anytime they were on duty; yet, this was a recurrent characteristic that distinguished officers who did manage the wing from those who did rehab who were not in the position of doing so. normally, officer doing rehabilitation, on the other hand, showed a completely different approach to their duties and interacted with colleagues differently. the officer in that role would not perform any ‘proper’ police work anyway; only rarely would he intervene during a dispute, usually calling the emergency squad. he would not even pretend to defend his own masculine public face in that role and just give up completely by constructing a very different face on the wing or simply acting ritualistically (in robert merton’s sense) ‘by simply doing his job’. unlocking an inmate's cell barred-door to let one inmate to reach the infirmary to do an enema or to have a shower; helping inmates to clean each other’s cell, or 'doing security' during a 'dog-therapy' session could not be easily translated rhetorically into a somewhat typical officer’s ‘war story’ imbued with risk and excitement; rather, it could be easily understood like an everyday caregiver experience with geriatric patients on a hospital ward. one officers doing rehabilitation (one who was often managing the wing) expressed this efficaciously by saying with a smiling face and some humour: luigi, look at me now! look at what i am doing on the landing... helping a patient to take a shower...ah, ah. i am supposed to be a police officer , am i? i am a prison police men … after all. while some of my fellow colleagues from the polizia [di stato] are risking their own lives patrolling the streets, and other colleagues of them, just now, entered a bank during a robbery and arrested a bunch of dangerous criminals (laughing for his own ridiculous exaggeration), and yet others are looking for mafia boss around italy... i am here watching a naked-dirty-fat sad man taking a shower. it is so exciting being a prison officer, isn’t it? ah, ah! (field note). however, the rehab officer duty was also to do security in a way or another. the duty of any officer doing rehabilitation, in practice, is doing security for both medical and paramedical staff as well as, concurrently, organizing and implementing the movement of prisoners from their own cell to the infirmary on the wing and backwards. the infirmary, located in front of the cell , is the room where prisoners would be visited by doctors, specialists, psychiatrists and nurses quite regularly, depending on the type of treatments prescribed and recorded on the medical records. those in t.s.i. (intensive sanitary treatment) would see at least a paramedic, often a doctor, on daily bases; others, could be left 'in peace' for weeks and would simply be approached at their cell door through the gate by the nurse twice a day for regular therapy and by medical in italian ‘prison officers’ are calle ‘prison policeperson’ and can perform the same duty police officers performs also in the free community. the police is called polizia di stato, in italy. and paramedical staff passing by. there was a striking contrast between the different ways in which particular officers performed the rehabilitation role. many officers would perform that role seriously and their job would therefore be seriously regarded by their colleagues in white. yet, they would always display some distance from medical staff to mark their being officers in uniform. some officer would understand and agree with the idea of rehabilitation at least theoretically; yet, almost no one would trust that rehabilitation could actually occur in the given condition and with those kind of persons in custody there; ‘they all come back…sooner or later’ was a common refrain. furthermore, many officers stressed during both ethnographic and formal interviews that they were not given decent working standards or human right and consequently those rights were also not available to prisoners neither. it is important to stress that the big majority of base grade staff working in the internal group would in turn perform both roles adopting most of the time a different face when performing one role or the others. each officer working in wing management or rehab would behave accordingly, at least to a certain extend. rookie officers would be more likely to change their ‘face’ while performing one role or the other than experienced ones. experienced officers would instead be more likely to behave in their own way almost independently from the particular role performed on duty in each particular shift. the time frame: doing routine work on the wing from officers' perspective the physical space – the architecture and the interior design – is a crucial coercive characteristic of any custodial institution; yet, another crucial aspect of it is the time-frame organisation of life and work inside (foucault , a, b; goffman a) in which all activities are split and interspersed at precise and predictable intervals of time over a certain period of time. a set of fixed day-to-day routines continuously structures the life of those working and living inside as well as the institutional organisation as such; of course, this structural time constraint can be either followed consistently, or resisted and challenged in different ways by all parties involved; on the one side inmates may try to delay the return from any activity (i.e. from the yard, or from the workshops) by simulating a small fight with one-another producing a time- consuming mediation that would realise their goal to delay the return to the wing; on the other, officers might retard the opening of the cell due to any ad hoc pretended organizational problem. since this cause serious protests, it is not likely to occur frequently. more staff on the wing: pros and cons all prisoners locked up at the closed wing agreed that the situation got better when more staff, and professional medical staff entered into the picture due to the sanitary reform that introduce national health care staff; it is reasonable to agree with that interpretation. one consequence many officers denounced of the presence of more staff on the wing was that it produced more requests; prisoners would become requesters thereby producing an increasingly bustling activity on the wing. these frantic time would only calm down twice during ‘yard’ and, after three o' clock when all inmates would be locked up and 'forgotten' by officers until the next ‘serious request’ or more probably the following crisis occurring either because a patience was acting out for psychiatric reason, or because their request were not taken into account seriously (in prisoners’ opinion), if at all. to be honest, however, all paramedic staff declared that working there was very light in terms of work if compared to real hospital were you have to work all day long. at about three o'clock, from monday to friday, all prisoners' activities would stop, and all inmates would be locked in again creating a much more relaxed atmosphere among staff that did not have to move inmate, lock and unlock doors and so on. until later in the evening, however, no significant reduction of the high level of noise would occur on the wing; on the contrary, people locked up in their cells would start to get anxious and nervous and would desire to have a chat with other than their fellow inmate, if they had one in the same cell. custodial staff, at this time, would finally desire to relax occasionally expecting a psychiatric announced visit to start later on. prisoners, resisting boredom and their deprived condition would frequently start to ask for help, to request anything they though they needed, to ask for information, and of course for a cigarette. this kind of continue requests was not much appreciated by either custodial or medical staff who resisted it in different ways. only a few request would be even considered or taken into account properly. others would be left completely unnoticed or unattended, unless the prisoners started to resist urging quick emergency squad intervention. often, prisoners started to resist loudly, screaming, shouting, banging toilet doors, throwing thing outside their cell, etc. yet, this attitude is costly for the prisoners in a way or another would later ‘pay the bill’ for their behaviour, at least with symbolic retaliation, such as an even less degree of attention. at the evening, the last medication was provided by the nurse directly cell-to- cell. she or he would go from one cell to the next one with a trolley packed with psychiatric and generic drugs; the nurse would follow the prescription written on the prisoners medications register proposing to the prisoners the particular cure he needed. some inmates were obliged by law to take psychiatric drugs; they would either take their pills spontaneously in front of the nurse, or be urged by the threat of the use-of-force or the actual use of it (infra, chapter , ), to accept an injection. however, many patients would be free to decide whether to take medication or not; a refusal of the prescribed medication would be written in the register and could influence the psychiatric opinion on the patient resulting, either in an appointment to evaluate the cure again, or in a different path to liberty . after each and every inmate has received the cure, eventually a strange quiet would invade the wing; yet, unpredictably, single protests or requests would break the silence and the background noise produced by tvs coming from both the prisoners' cells, the infirmary or 'elsewhere'. requests during late evening, just like it happens in many hospitals, would not be appreciated and would be treated accordingly. late in the evenings, ‘calling for no reason’ is considered as a disrespectful behaviour towards staff both by nurses and officers on duty on the wing. normally inmates would respect this informal ‘hidden’ rule; however, really decompensated patients would continue to 'disturb' unwillingly causing a 'shit night' to those staff who would try to change the situation for the better by medication (on demand), placebo or other within the asylum, not all patients can be obliged to take psychiatric drugs. often, other formal authorisations from other bodies are needed just like it would normally happens to any other free citizen who goes berserk beyond the wall. tools of influence (infra, chapter ) available, including the use of the threaten of force (infra, chapter ) if necessary or when exasperated by the heavy situation on the wing. officers and nurses able to ‘produce’ a calm wing by any means were highly considered by their fellow colleagues; those working 'by the book' thereby creating problems were frequently publicly criticised and avoided if possible. each time any particularly 'rigid' person was on duty, a very nervous feeling among staff emerged. ‘the devil’, a so-called very ritualistic and disciplined worker, whom was given such a heavy nickname, was even considered to bring bad luck to those working with him or her; people were laughing behind his or her back; some officers have even told me a few stories to support their opinion to convince me. the night shifts i observed looked very normal and all staff – one officer and one nurse– seemed to be busy and moved around the cell to observe inmates. however, i have been told more than once that i would have not done a proper night shift until i had not properly slept some hour on the wing, either in the officer’s closed office next to the wing glassed box (where there were both a desk with a computer and a hospital stretcher). chapter the 'cycle of the use-of-force and violence’ : symbolic and credible threat on the landing this chapter is an attempt to investigate some aspects of the dynamic of officers doing soft-coercion mainly by observation and ethnographic interviews – and also by visual methods (rose ). by providing both a model (see, image . ; . ) describing the general traits of the recurrent particular situations and at the same time offering few thick descriptions of actual occurrences of doing soft-coercion, this chapter will provide some empirical knowledge about what doing soft-coercion in practice is trying to overcome the difficulty to translate actual life and interactions between particular human-beings into a verbal (and partially visual) narration. by doing so this chapter intends to shed some light on how those interaction chains between the keeper and the kept are performed bodily and emotionally time and again, through the ethnographer observation, witnessing (kaufman : – ) and verbal and visual narration the ‘cycle of the-use-of-force and violence’ is also called the ‘cycle of doing coercion’ here. the two expression are interchangeble and refer to exactly the same ‘model’. image . the phases of the 'cycle of the use of force.' image . the 'cycle of the use of force and violence' (or the ‘cycle of doing coercion’) of course, once again, it goes without saying that officers were doing much more than ‘doing’ coercion inside: one could write about pet-therapy, theatre, dress codes, and the incredible figure of the chaplain and so on. however, this work is focused on ‘doing’ coercion and pushes in the background all other aspects with no intention to hide them or to over-emphasise coercion, but simply to address it head on. prison officers’ job, as we said above, is in fact certainly intrinsically about coercion, either a 'soft' or a ‘hard’ one (meaning threatening or actually using force). the relevance of the issue of coercion was once again recently stated also by crewe in his book the prisoner society ( ) in which he argued that '[a]ll prisons are, in the last instance, coercive institutions, even if naked power is not immediately visible [to all ethnographers] in their everyday operation' (crewe : ). yet, crewe and others have also clearly argued –at least in my interpretation– that doing policing (liebling ; liebling et al. ) on the landing is not only, or mainly, about doing coercion; instead soft-power and psychological power (crewe : – ) are discretionary at stake inside. officers use both formal and informal sanctions; either soft or hard ones; in the day-to-day staff-prisoners relationships and interactions officers often relay ‘on informal ‘tactics of talk’…to achieve compliance’ (liebling and tait : ). unfortunately, though, those ‘tactics of talk’ (or tools of influence; infra, chapter ) compliance is not always achieved and often the implicit or explicit threat or actual use-of-force would be needed instead. although i support both crewe's and liebling’s interpretation about soft-power and the ‘tactics of talk’, i would stress that the use-of-force is always at least implicitly, some might say even unconsciously, in the picture inside; it was surely so in the ethnographic field observed (infra, chapter ). yet, this chapter shall empirically focus in particular on ‘doing’ soft-coercion: in other words, threatening the use-of-force either symbolically or credibly (also see campana and varese ). in the particularly 'problematic' male forensic psychiatric hospital wing with twenty-five cells hosting usually about thirty-three to thirty eight persons in a close-cell regime in which the crucial part of this ethnography was mainly conducted – as well as in the nearby prison wings of that custodial complex– coercion would imbue a long-lasting chain of interactions routinely occurring (collins ) within the facility between the keepers and the kept. reggio emilia custodial complex is a particularly secure facility that had been designed to be a maximum security prison; by its very physical nature, it was already enforcing and constituting by and of itself a constrained coercive environment (jewkes and johnston ; foucault ; anastasia et al. ) in which the prisoner-officer relationships and power dynamic were particularly unbalanced. forward panic and credible threats: unpacking soft-coercion chapter highlights some features of collins' micro-sociological framework on violence ( ; ). in that work collins has also put law enforcement officers doing coercion under his lens systematically; primarily police, yet some prison officers as well . following collins ( ), this paper will consider officers ‘doing’ or ‘threatening’ coercion as a particular type of violence without applying to the word violence any particular negative moral connotation (see chapter ). writing about the police and about the popular perception of violence, collins argues that: [o]ur image of violence is based on the most dramatic instances [mainly from the media images] …violence is not an easy or automatic process, and it takes a lot to trigger it. police violence [here, read police coercion more broadly] in this respect is like other kinds of violence. whenever we are able to look across a range of situations … we find that most of the time most people avoid [physical] violence (collins : ). collins then further states the particular situational nature of violence claiming that ‘[p]hysical resistance is by far the most likely factor to lead to police violence’ ( ), and this ethnography inside a male custodial institution clearly supports it (yet, see infra, chapter for a less un-critical statement). he reinforced the relevance of his micro-sociological approach, drawing selectively on the ‘police and policing’ literature, stating that, the situational nature of police violence is underscored by the fact that a variety of background and attitudinal differences among police are uncorrelated with who is high or low in violence [i would add, though, as reported on official records] (collins : ). it mainly referred to police officers and military soldiers; yet, it did also write some pages addressing bullying in prison ( : – ). although, here, the main theoretical framework is based on collins 'radical microsociology' ( ; see also collins : – ), it has been necessary to slightly calibrate collins’ approach to the custodial setting taking into account both the observations performed and collected during the ethnography, and the prison literature on officers’ (and prisoners’) heterophobia and racism (phillips : – ; earle ) as well as that on masculinities (jewkes ; sabo ; sim and ricciardelli et al. ; earle , , ); heterophobia, racism and masculinity were in fact three dimensions that imbued the officers' cultures, to a different degree in a case or another, influencing at least some officers particularly attentive to doing coercion, and more generally the 'wing atmosphere' thereby influencing, in a way or another also the interactions between the keeper and the kept in the custodial complex (as well as their relationship with the ethnographer). in the theoretical framework adopted here, particularly relevant is collins’ newer elaboration of his 'interaction ritual chains'; he proposed it in his last book, violence ( ), in which the concept of 'forward panic' and 'emotional field of tension and fear' were first presented exhaustively. collins, just like others in the interactionist tradition, has dealt with emotion throughout his career; in his micro-sociology of violence ( , ) he has also focused on emotion straightforwardly. he has defined 'forward panic' and has explicitly argued that 'violent interactions are difficult because they go against the grain of normal interaction rituals' ( : ). interactional ritual chains ( ), in fact, was mainly dealing with cooperative or at least non- violent interactions. therefore, collins introduced new conceptual tools in his most recent book to address violence ( ) within that same interactionist framework. 'confrontational tension' would be [t]he tendency to become entrained in each other's rhythms and emotions [… it] means that when the interaction is at cross purposes – an antagonistic interaction – people experience a pervasive feeling of tension. (collins : ). he continued by saying that: 'at higher level of intensity [confrontational tension] shades over into fear. for this reason, violence is difficult to carry out, not easy' ( ). a barrier of confrontational tension and fear makes violent intercourses less likely to occur frequently. ‘for violence to happen there must be situational conditions which allow at least one side to circumvent the barrier’ (collins : ) . despite being fear a recurrent topic in many prison officers' interviews performed and video-recorded in the field during the ethnography in reggio emilia, the observation showed a very different picture regarding the public display of tension and fear. usually, officers masculinities and 'propensity for action' would result in officers displaying tension but, concurrently, hiding their fear almost completely when being on stage ‘doing’ coercion. fear would only be discussed, with anonymity safeguards in place, in one-to-one formal interviews performed outside the public and fellow officers’ gaze, and this regarded the majority of the participants interviewed. on the contrary, both tension and fear were quite often visible and audible in prisoners’ conducts and interactions especially when the cycle was at stake. in other words, prisoners’ fear was much more likely to be on display than officers’. despite collins’ theory of violence ( ) high level of generality, the debates and the critics it prompted (inter alia, felson ; cooney ; wieviorka ; kalyvas ; weenink ), it often fits quite well with the observations performed inside. officers would normally use their necessary capacity 'to circumvent confrontational tension/fear' on a daily basis. the researcher had to learn how to display that ability as well, in order to save his face and build his own reputation among officers (infra, chapter ). although, in prison then, according to collins ‘most fights occur in the presence of guards (edgard and o’donnell ): this is a mechanism by which fights are kept short’ (collins : ). fear was more likely to be visible on the prisoners' side rather than on the officers' one, red faces and nervous movements displaying a clear tension were visible on both sides in many occasions. in front of emergency squad, however, some prisoners would almost faint, show trembling and sweating bodies, cry, and make some very nervously-uncontrolled movements, and so on. instead, officers would usually display a militaristic 'cold' or bored face; particularly so when doing soft-coercion. that capacity of facing violence described by collins might also be interpreted at the light of the conceptual tools of 'emotional shields' and ‘anger boundaries’ introduced by hochschild ( ) discussing the ways in which violent behaviours would be managed by emotional labour in the constrained place of an airplane cabin by hostess and stewards (infra, chapter ). prison officer, boxing and wrestling another useful interpretation could also highlight the similarities between prison officers and boxers; prison officers and boxers might share some similar emotional tensions . in fact, both the prison officer and the boxer must learn to be able to fight without fear with their own body and suppress pain in order to perform their violent interactions competently and effectively . in particular, the notion of sparring (wacquant ) is significant here. sparring is the practice by which a boxer performs a simulated fight with a fellow boxer that must be adequate to him or her: not too weak, nor too strong in order to avoid losing the face with the peers. just like sparring, yet with a very different power balance in the picture, strongly in favour to the officers in a prison setting, both sparring and doing coercion are here i want to explicitly thank roberta sassatelli for suggesting me to develop this point. more over, in reggio emilia, one officer was a box teacher and others would train with him privately. [a] redoubtable and perpetually renewed test of strength, cunning and courage, if only because the possibility of serious injury can never be completely eliminated, in spite of all precautions…black eyes, bruised cheek- bones and swollen lips, bloody noses, and battered hands and ribs are the habitual lot of those who put on the gloves on a regular basis (wacquant : ). not only are those physical damages the protagonist of war stories told to novices, to nurses and to the researcher by senior staff inside. they have also been the everyday bodily signs of the coercive relationships observable throughout the entire course of the ethnography. despite the similarities, one crucial difference separates the sparring performed by boxers to the officers doing coercion, though. in boxing, [t]he principle of reciprocity … dictates that the stronger boxer not profit from his superiority, but also that the weaker fighter not take undue advantage of his partner's wilful restraint (wacquant : ). boxing is a sport. instead, in officer’s intervention there was no space for a 'principle of reciprocity' at all. inside, officers dominate prisoners who must follow officers’ order by law; in order to obtain compliance, officers are requested by law ‘to do’ coercion (using force) if necessary; prisoners, instead, are never allowed in practice to do so and are forced to be docile (also see gonnella a, b). of course, some times, interactions are not performed by law, but this is an entirely different question to which, however, ethnographers, and not only critical ones, should not continue to turn a blind eye to (infra, chapter ). police officers and prison police-men (prison officers) on patrol as already said above, adopting collins' framework on violence to grasp what occurs in prison, one needs to take into account the differences between the police officer’s and the prison officer’s working environments and contexts in general. afterwards, doing ethnography, one also needs to focus on the particular characteristics of the particular context observed, trying to untangle the particular ways in which the ethnographer characterizes, facilitates and constrains the particular coercive interactions that are performed the particular coercive interactions that are performed by officers inside (infra, chapter ). police officers’ and prison officers’ job differ quite significantly to one another (liebling ). in reggio emilia, firstly, prison officer and prisoners were constrained in daily face-to-face interactions with each other, eventually becoming acquainted with one another (goffman a). that would not usually happen ‘on the street’ in italy; police officers on patrol usually walk among people they do not necessarily know that well, if at all (see also; alpert and dunham ). moreover, prisoners-to-prisoners (edgar ) violence would occur regularly between people constrained coercively to share the same limited spaces with one another. often, the perpetrator would live or work side by side on the same wing with the victim (even though particularly risky situations are treated accordingly and one particular prisoner might be relocated to a so-called safe wing); sometimes, a perpetrator and a victim could even live together in the same cell. again, this is not necessarily true ‘outside the wall’ all the time ; yet, it is almost always true in the ’prisoner society’. on the street perpetrators and victims do not necessarily know each other. however, violence on women often occurs within the domestic world; yet, also in that context the degree of freedom of movement and the time in which the partners are physically constrained together is significantly less than what usually occurs within the wall. secondly, the quality and quantity of weaponry and social ties that are available inside a custodial institution, or outside of it, vary significantly both for the officer and for the person in custody and this impinges in the capacity each one has to threaten and/or to use violence towards one another effectively. lastly, custodial institutions in italy are usually still characterised by invisibility and unaccountability (gonnella b; manconi et al. ; see also pratt and sim ). this is, if possible, even truer regarding the forensic asylum (o.p.g.) (miravalle ). police officers patrolling the streets are obviously much more visible and more accountable than prison officers secretly working behind the wall. this is particularly true in italy where prison officer’s accountability is a chimera (see, palidda ; alpert and dunham ). officers in the emergency squad the prison officer emergency squad (infra, chapter ) was the crucial actor ‘doing’ either soft or hard coercion. no single officer worked exclusively in the squad. however, some officers would be more frequently likely to be part of it than others. yet others would refuse to be part of the squad as much as possible, and in case of intervention would remain at the rear of the front line, far away from 'where the action is'. some clearly enjoyed the action and might resemble those police officers collins called ‘cowboy cops' (collins : ); others would instead try avoiding intervention and violence most of the times. officers who actively and regularly participated to the emergency squad interventions had a much better reputation than those who tended to avoid participating in it (yet, this ‘data’ should be analysed more carefully at a micro level). this is also consistent with collins arguing that: [t]he most violent police … are well-liked by other cops. this is not only because they are often high-energy extroverts ... they are the informal leaders of the police. this fits a basic principle of small-group research: the popular members of the group are those who most closely express its values and are best at what the group is attempting to do (collins : ). the emergency squad was not usually operating, nor was it based, on any of the wings. the emergency squad would never enter a wing in any day-to-day not-particularly-critical situation. its role was limited to perform either soft or hard coercion only. by arriving on the wing if and only when a critical event had occurred, the squad was able to perform a symbolic threat simply by appearing. soft-coercion 'soft-coercion' was defined above as twofold; it includes either ) the symbolic threat of coercion or ) the credible threat of coercion as well as both of them one after the other. the phenomenology of power (popitz ) has directly explored theoretically 'threatening and being threatened' ( – ); yet that book is not available in english yet . popitz ( ) showed the intersubjective and interactive relationships implied in each 'threatening structure' ( ) that would be by and of itself, in popitz’ interpretation, a form of power. according to him, during the interaction there is a shifting and ongoing power dynamic that depends on how any of the actors involved in the interaction participates in it. importantly, popitz argued that, not only the victim who is threatened depends on his poggi is currently busy translating the entire volume from germany to english for the columbia university press (personal communication). perpetrator's acts or threats, but also the perpetrator depends on – and becomes constrained by– the following decisions and actions of his or her victim ( ). popitz also showed that even ‘threatening’ coercion is costly and strongly influences the credibility and reputation of the 'perpetrator'. a perpetrator who has not the capacity to enact efficiently his or her threat whenever necessary would lose his or her reputation and credibility accordingly; the victim will treat his or her next threat consequently. in other words, during the ethnography clearly emerged that any threats constrained not only the victim, but also and more interestingly the perpetrator. probably, this empirical observation, popitz ( ) theoretical interpretation of the threatening process, as well as campana and varese ( ) particular interpretations of the credible ones, might also help to shed some light as to why officers often turned a blind eye facing a problematic event avoiding by doing so to put their own credibility at risk (as well as avoiding to be harmed). performing credible threats is costly and can result in ‘doing’ coercion bodily necessarily, even as an unintended consequence. the ‘cycle of the use-of-force and violence’ this section will first outline the three main phases of the 'cycle of the use-of- force and violence' (image . ) adopting the interactionist perspective and toolbox presented in chapter and other just discussed above. the cycle is intended as a map to show the configuration of the dynamic and routines of ‘doing’ coercion (or using force) that would be usually adopted by the different actors on the landing, that have been observed during the ethnography. a cycle that would normally start after a formal or informal definition of a so-called critical event; just a problematic event that is labelled as critical event. in particular, it will highlight on one side, the recurrent sequence of events and the cyclic chains of interactions routinely performed by the wing officer, the security manager, and the emergency squad when dealing with institutionally labelled 'critical events' to reinforce soft-power (crewe ) adopting hard- power by threatening or doing coercion bodily. on the other side, it will also provide thick descriptions of few exemplary interventions observed during fieldwork to return to the flesh-and-blood reality of all those involved in these violent episodes. the complexity and peculiar characteristics of any particular squad’s intervention can of course only be sketchily represented by any short ethnographic narration of whatever sort; let alone by an abstract map (image . ) such as the ‘cycle of doing coercion’. the cycle’s goal in fact is limited to outlining the basic and recurrent structure of the situations observed modelling the possible sequence of actions that would usually occur (describing it in very general terms) in any particular critical event time and again – and at the same time constructing it in an analytic and synthetic way. each descriptive ethnographic account, on the other side, can instead try to describe thickly only some very particular aspects of any particular event it attempts to describe and concurrently (re)construct. the description will of course necessarily only be a ‘partial truth’ (clifford ) from a particular standpoint (infra, chapter ). following clifford, in fact, ‘[e]thnography is a hybrid textual activity: it traverses genres and disciplines [although e]thnography is [not] “only literature”… it is always writing. (clifford : ). an ethnographic description, such as a field note, an image, a transcript, or a vignette, will not even attempt to produce any kind of generalisation; it simply attempts to describe more or less accurately one particular chain of interactions observed in one particular situation by a particular observer. on the contrary, the cycle's raison d'être is attempting to construct some forms of generalization strongly grounded on the previously observed particular situations. by thickly describing a few particular interventions taking into account the prisoners’ social position in terms of status, race, mental health, as well as the more or less authoritarian officer’s attitude, few narrations will also briefly show an example of how some particular agent’s characteristic might have influenced a particular course of action in a way or another. furthermore, the emphasis on the situation of ‘doing’ coercion does not allow the ethnographer to downplay the relevance of each prisoner's social position– such as race, mental health, sexuality, and so on. nor, does it allow the researcher to skip considering the social capital, in terms of power, that each prisoner and officer involved in critical event embedded in his particular biography. in fact, despite the usually conflictual and sometimes violent relationships between many 'ordinary' prisoners and officers observed on the wing, the relationships between officers and 'mafia boss' of one organized-crime organization or another (varese ) – a prisoner who had served time in a hard-prison-regime wing (a special regime for organised crime related convicts called ' bis') – would usually be characterised by a goffmanian presentation of self in which facework, on both sides, would display the maintenance of civility, deference, formal respect and interactive accommodation in each and every circumstance ( ). as one officer put it, [mafia] bosses are gentlemen; they respect me as a worker and never disturb me without a good reason [like other prisoners usually do]; therefore i respect them and treat them accordingly. usually, i try to respond each and every time they call me...they always say 'please' ...and thank you (field note). officers had never used hard-coercion (infra, chapter ), nor the credible use of coercion with a 'boss' in front of me. some officers would justify it by saying that 'i boss sanno farsi la galera' (a boss knows how to behave properly doing time). however, there is more than that in the picture; italian prison officers also fear boss’ retaliation and the bosses’ capacity, even when incarcerated, to perform 'credible threats' (see also, campana and varese ). the ‘cycle of the use-of-force and violence’ in reggio emilia in reggio emilia, doing coercion was always implicitly in the picture (infra, chapter ) just like, possibly, in many other custodial institutions, both in italy and elsewhere. problematic and violent events would occur continuously in the particular italian facilities at stake; yet, a complex set of routine, habits, idiosyncrasies and discriminatory practices would influence more or less significantly the discretionary possibility of an emergency squad intervention. the intervention would only rarely be performed already at the beginning of the cycle (phase in image . ). usually, the cycle would start more softly by the informal arrival of the security manager from ‘downstairs’ ( . in image . ) where his or her office and those of other senior managers are. the security manager would intervene in the day-to-day wing routine, more likely than not, when asked to do so by a subordinate, after all other negotiations performed at the wing level ( . in image . ) and the relative ‘tools of influence’ had failed. entering the wing and escorted directly by the wing officer towards the ‘problematic inmate’, the manager would try to close the dispute by using ‘tactics of talk’…to achieve compliance’ (liebling and tait : ) just like others described in the anglophone literature. the arrival of the security manager would start the cycle. the security manager entering the wing was a clearly observable turning-point that usually shifted the situation significantly from one that would be managed locally –and that would be labelled 'ordinary' by all those working and living on the wing – to another that could or could not start a particular configuration of the interaction chain described in the ‘cycle of doing coercion’ or quickly move to de-escalation. in other words, the entrance of the security manager starts de facto the cycle. each particular interaction chain, depending on the particular social characteristics of the actors involved could or could not escalate more or less quickly to the level of soft-coercion and threats and even to that of hard- coercion before, eventually, deescalate to the 'ordinary' level of conflict (other would probably call it order) again until the next critical event would re-start. the ‘cycle of the use-of-force and violence’ would usually occur in three phases interrupting for a larger or shorter period of time the regular regime of the wing in which coercion is only there implicitly and all issues, critical one included, are dealt with locally by the officer on duty patrolling the wing and if necessary by other wing medical staff such as the wing nurse or the psychiatrists. the cycle can be divided into three parts (image . ). firstly, the pre- intervention phase in which the emergency squad intervention would not be at stake; during that phase the wing officer –and medical staff –would pursue the goal to constrain the critical event locally on the wing simply asking the informal intervention of the security manager. secondly, the next phase (phase , intervention, in image . ) would start with the call and the following entrance of the emergency squad on the wing; that would regularly occur whenever the previous phase failed in managing the crisis. the entrance of the squad would clearly start soft-coercion ( . . in image . ) as the next section will describe. then, doing soft-coercion would eventually lead either to the end of the crisis – with or without doing credible threats ( . in image . ) – or to the squad doing hard-coercion ( . and . in image . ) (infra, chapter ). lastly, at any point of the cycle the situation could escalate entering the third and last phase and by doing so getting back to 'business as usual' on the wing. the intervention phase would start by the turning-point of the entrance of the emergency squad; the exit of the emergency squad, on the other side, would clearly mark the end of the second phase and the start of the last one: the de- escalation phase . before moving to the next section it is important to stress the discretion involved in the labelling process that constructs any usual problematic situation into a critical event justifying the wing manger’s arrival and possibly the squad’s intervention thereafter. in another situation, i.e. if another prisoner or officer would be in the picture, the officer might have turned a blind eye instead; this is what discretion is all about. this process is not power-neutral and the particular social and power positions of the prisoners (and the officers) as well as the particular attitudes of both the keeper and the kept to each other would play a role in that process influencing its course; particularly so at the extreme of those stratifications. it has been observed that being very powerful or powerless, or having a very high or a very low reputation strongly influence on the particular enactment of the cycle and even on the discretional decision either to start it or not. once the labelling process performed by both the wing officers and others in the chain of command or in the medical hierarchy had defined and constructed any occurrence into a critical event, the structure of the situation would then to be clear, though, the critical situation could also move from phase directly to phase , thereby completely skipping the phase : the intervention phase; yet, if the intervention was in the picture, then its start and end would correspond to two clearly visible and audible turning points: the first turning point would be the emergency squad entering the wing in a platoon; the second one, instead, would be the officers of the emergency squad exiting the wing. follow a similar path: the ‘cycle of doing coercion’. it would be performed in quite similar ways in many circumstances that appeared to be quite different from one another if observed closely; yet, also during the particular performance of the cycle, discretion, and discrimination are also at stake. however, ceteris paribus, the collins' toolbox and the cycle can together help describe the sequence of actions and attempt to unpack the dynamic of the cycle in many particular situations. threatening coercion symbolically by bodily presence and face-to-face interactions the emergency squad's arrival on the wing would start soft-coercion beginning the phase of the cycle (phase in image . ); it would only begin after the informal (or formal) definition of a particular event as 'critical event' and, usually, only after the medical approval (which de facto might also occur ex- post). the emergency squad would mainly enter the wing as a consequence of one of three situations. firstly, by an explicit verbal face-to-face command of the superordinate responsible for security: the security manager who started the cycle by his arrival on the wing. then, in response to a sudden loud security alarm (image . ) on one particular wing or another. next, as a reinforcement to an officer's (or staff) self-defence after an alleged officers' (or staff’s) assault (independently of the source of the information and the availability of a formal command to intervene by a superordinate). lastly, to enforce a forensic psychiatric order of compulsory psychiatric medication (in italian, t.s.o. trattamento sanitario obbligatorio). image . emergency alarms (ethnographic image, detail: luigi gariglio). the physical entrance of the emergency squad onto the wing would visibly introduce the issue of coercion (see, image . ) for all the prisoners observing it either from within their cell or from the outside, as well as, concurrently, for all other staff on the wing at that moment (and, of course, for the researcher too). usually, prisoners and other staff on the wing (such as i.e. nurses, doctors, psychiatrists, chaplains and so on) would only deal with one (wing manager) or maximum two (also rehab) officers at a time (infra, chapter ); often those prison officers would be ‘invisible’ because they would be working in their office or as prisoners would say they would be 'minding their own business'. the squad would include at least four officers, normally a minimum of six and seven up to ten or more, marching like a military platoon; the arrival would be a visible and audible bodily presence that would produce a remarkable turning point on the wing atmosphere, suddenly changing the situation for all parties involved in a way or another. image . : the emergency squad entering onto the wing (ethnographic image, detail: luigi gariglio) usually, soft-coercion would occur between custodial staff and prisoners when the first and the second would still be physically separated from each other: prisoners would typically be locked up in their own cell. in fact, whenever a real crisis would suddenly explode with prisoners moving freely on the wing, the soft-coercion phase would often be skipped and hard-coercion would instead immediately enter the picture. threatening coercion symbolically the symbolic threat of coercion is here defined as an embodied symbolic display of authority and, concurrently, physical force – a kind of reinforced 'authority maintenance ritual' (alpert and dunham : ) – by which a group of officers, often headed by a security manager would intervene in a critical situation to try to solve it efficaciously. its eight o’clock in the morning. a group of officers is entering the detention area after attending the morning meeting with the commander and having an espresso with colleagues at the prison cafeteria, situated downstairs of the rooms where some officers live. just now, three to four officers were ‘put’into, or ordered to form the emergency squad; yet they all know that they are available for any other duty directly required by the commander or the security manager until the next unpredictable emergency occurs on the landing. they also know that in case of emergency, particularly so when an alarm rings, there is no time to lose. they will stop doing whatsoever they were doing and run toward the crisis which characteristics at that stage are still unknown to them. before arriving on the emergency scene they usually have no previous knowledge about what has occurred. ‘when the alarms ring you just have to run upstairs [the detention wings] and solve the problem in a way or another; it doesn’t matter whether one prisoner’s doing self-harm, is fighting with his cell-mate or whatsoever; you just go, see what’s up and move head on’. once on duty in the squad, officers stick with one another most of the time being ready for an unpredictable intervention. in fact, they all know that, here, it is very likely that something will happen, sooner or later. minimum, they will have to perform one soft intervention to try solving one dispute or another; it is their routine job and they seem ready for it; yet, one not so young prison officer that had just come back from sardinia [one italian island] where his woman still lives looks really tired; he had a very nice week with her and is now yawning repeatedly. 'it’s time for a coffee, let’s go and get one!’ he says. the three of them go to have a coffee, one waits at the office just in case of an emergency call. just now two other officers escorted the prisoners coming from the yard back to their own wing. one of the most routinary, yet dangerous, activities occurring inside performed twice a day, day in and day out. suddenly the phone rings. francesco, the officer patrolling the closed wing is calling from upstairs in the wing. he is urging the intervention of the security manager: a prisoner is refusing to enter his cell and behaves ‘childishly’; he lays on the floor with his arms open wide like as if he was crucified. he is a guy who has done it before time and again. they say he is simply asking for attention. the security manager, and then the commander come upstairs. one after the other each of them tries to convince him to enter into his cell; no way! after ten minutes or so the commander goes back to his duty leaving the problem to his security manager. jup (not his real name), an italian-nigerian very heavy, muscular and tall black guy once again does not seem to intend to cooperate at all. he is really gentle though. he speaks softly and calmly just reiterating that ‘i do not want to be locked up now. just leave me a couple of minutes more and i’ll do it’. jup’s 'trick' lasts for more than twenty minutes. the security managers know jup is completely unpredictable, and that an intervention might easily turn out to be a really violent confrontation. and jup had been behaving better lately; he had not caused any problems for the last month or so. that’s why the manager is waiting for so long (of course my presence strongly influences the manager’s and possibly also the inmate’s decisions. in collins’ terms in fact there was a spectator of violence; the so-called research effect was in the picture. furthermore jup could have intended to show me one of his performances by which he was attempting ‘doing freedom’ in a way or another (ugelvik ). the manager is trying kindly to ‘help him stand up’ and also offers him a way out of the situation that is now becoming embarrassing for all parties. a way out with no consequence for any of the two of them: a win-win solution. in fact, he asks jup whether or not he needs to see a doctor or a psychiatrist thereby offering the prisoner the opportunity to lawfully stay for some extra-time out of his cell waiting for a visit. jup does not accept the deal and continues what to me seems like theatre performance, yet a very costly one to him. the situation is suddenly becoming serious. the manager orders the officer to call 'the guys', meaning the squad. the officer’s dialling on his wireless phone; he calls for the squad intervention. downstairs the guy who waited in the office runs to the coffee-point just at the end of the corridor, where the others were still chatting after the coffee, to inform them. the guys, understanding what's happening start walking towards him. he says ‘let’s go, jup is behaving stupidly as usual’ one replies sarcastically ‘he did not learn the lesson last month…ah ah…or he forgot ah ah’. knowing him, they imagine that nothing really urgent is at stake. however, they just walk through the corridor, pass by the commander’s officer and tell him ‘we rush upstairs!’ he replies ‘again? basta! i had enough!’ they enter the detention wings area through the block gate (the entrance to the asylum wings; infra, chapter ) turn left, walk upstairs and enter the wing at the first floor where the closed wing is. the wing’s atmosphere is quite calm; some prisoners, though, are also complaining shouting to jup to stop behaving silly. one prisoner shouted from a few cells away. ‘don’t be fool! you should know all too well what to expect acting like this again’. another even yelled racist words urging jup to go back to africa, even though kunta kinte – as the yelling prisoner and some officers usually call him for the colour of his skin (and he usually docilely accept it)– is italian, born in italy and had never even been to africa as yet. it’s raining. it’s really cold inside, because wing officers leave all the corridor windows open because ‘it stinks so much here’ and therefore the heating has almost no effect; staff use an electric heater for their box; at the infirmary they do the same; prisoners try to cope with it in a way or another. the morning started badly. there is a lot of tension and i am waiting for the team to start a fight. their intention seems clear to me, yet, they are still quiet. the officer heading the squad firmly says ‘just rush in jup! now!’ jup was clearly unsure of what to do. he hesitates for a couple of seconds and then he stands up, and enters his cell with a smile on his face. the officers displayed a very annoyed face and the other officer who ordered him to enter the cell banged jup's barred door as hard as i had heard so far. the team walked downstairs and the wing officer finally went back to his box to watch some tv and finish some paper work (vignette . ). that group of officers forming the squad would first head towards the wing where their action is needed. next, they would enter into the particular wing where one particular episode had ‘occurred’. they would enter the wing hierarchically displaying and performing their authority constituting and re-constituting by their very simple presence a symbolic threat of the possibility of an imminent use of physical coercion. once on the wing, the squad would be ready to begin its theatrical display of power on the landing heading towards the particular cell – or place – where one particular prisoner (or a group of prisoners) had 'produced' the event previously institutionally labelled as critical. this symbolic intervention would last up to maximum thirty, forty minutes; the shortest lasted less than five minutes or so. during that period of time, one or more of the officers in the squad would try to calm down the ‘agitated prisoners’ pursuing a negotiation and, afterwards would return to their base waiting for the next intervention or any other duty to perform in the meanwhile. some officers are having lunch together at the canteen watching the news on tv. a newly arrived prisoner starts to threaten the wing staff lunching objects and insulting; moreover, he makes so much noise to be audible from the security manager downstairs. downstairs, due to the prisoner’s record arrived with the prisoners, the prisoner is already ‘well-known’ as provoker and completely unreasonable (in prison officers’ opinion by reading the documents other fellow officer somewhere else had filled in). the security manager and the commander decide to go upstairs together to explain him ‘how it works here’. once the commander is in front of the prisoner’s cell, the newcomer starts to complain about everything: ‘the room is dirty; the mattress is stinky, here it’s too noisy, and so on’ [which, by the way, it was all true indeed]. the commander calmly listens to the prisoners for a couple of minutes, then, he suddenly asks gently but firmly: ‘where do you think you are? in a hotel? we are all working for you…don’t worry, everything will be alright’, and disappears downstairs. fortunately for the prisoner, the wing officer on duty is carlo (not the real name), a very calm and understandable one; he is an 'accamosciato' (an officer considered to be on the prisoner’s side by his peers and referred to accordingly). trying to be polite he goes to the prisoner’s cell and keeping a safety distance from him, he tells carlo to keep in mind all the times that ‘if you respect us we will respect you. if you do not, we shall behave accordingly’. and then, the officer adds ‘just for your information, you started really badly, indeed!’ the situation escalates and the prisoner starts to urinate in a bottle and tries to hit a nurse who understands his intentions and goes back to the infirmary promptly informing the wing officer with the wire-less phone of carlo's behaviour and of carlo’s cell condition. immediately, the officer calls the commander who calls the squad and other two guys from the canteen ordering them to go upstairs immediately and 'explain the new guy how it works here'. the squad waits for a couple of minutes for their fellow officers to arrive and promptly march upstairs quite noisily. they walk through the corridor, then to the stairs and arrive upstairs. once at the wing gate, they enter the wing and the last officer bangs the wing barred door behind them loudly, thereby not only locking it safely, but clearly signalling their arrival and intentions. they march like automata towards the prisoner’s cell that is at the end of the wing: cell . the wing is very noisy and some prisoners were banging their bathrooms metal doors to protest against the new prisoner who is not able to behave properly just after a few moments from his arrival on the wing. others, however, say (to me later) that he is right because that cell is in a particularly indecent condition and he has just arrived; he is probably shocked not only for the arrest but also for his new detention environment and the fellow prisoners he sees around him; he must be really traumatised. anyway, the reinforced squad arrives in front of him without particularly bad intentions yet displaying thuggishness. they hardly ever do coercion for such a ‘stupid’ reason to someone just arrested; yet, the must give him a symbolic lesson to explain his new environment. they know that new arrestee can show some problems coping with the new situation. the officers’ faces are very severe, their body very strong, their appearance not soft at all; some look more annoyed, others more bored, yet others simply doing their routine job. the head of the squad, however, is more nicely mannered and tries being polite and displays an understanding behaviour open to a negotiation. the head of the squad, with a smile that could also be interpreted as sarcastic, said something like ‘what’s up? have a problem?’ the new prisoner, possibly overwhelmed by the unexpected situation, suddenly calms down, goes towards his stinking matrass walking on his own urine on the floor, lays down and says with a very low tone of voice: ‘no problem, i am tired. i’ll try to sleep’. ‘can we go now? is it ok with you now? can we do anything more for you? please, don’t stress; it is better for you... wait calmly and, if you behave properly, today or maximum tomorrow you’ll see the chaplain, the social worker and if you want it, even the psychotherapist. in a particularly funny way (for his colleagues and to be honest for me too), yet in this case not so professional, the officers before leaving added 'if you need it we can also call father christmas for you...ah ah’. the prisoner replays with a hardly audible tone of voice ‘just do what you want to do’. i go downstairs with the squad and have a coffee with three of them. one officer says kind of confidentially (yet, he later on, said it in detail in a video recorded interview). 'it has not always been like this luigi... a few years ago he would have been directly taken in a way or another and forcibly tied to the bed for some days; that was normally our welcome; a new comer behaving like that...no way! now it’s different. we work and act more like social workers, rather than like proper officers; in fact, we are almost not officers anymore. some complain for this. i am happy, though. i have really had enough of continuous fighting and prefer to solve the situation peacefully if possible, or at least try to doing so. we are not all the same here, as they think out-there' (vignette . ). normally, the symbolic threaten of coercion would not occur abruptly; instead, it would be the outcome of the failure of two chains of interactions which had occurred beforehand on the wing, one directly after the other; firstly, a series of (failed) negotiations – or only one – would have occurred repeatedly at the local level of the wing directly involving both the particular prisoners and the wing staff alone ( . in image . ); no security manager’s informal intervention is in the picture at that stage. secondly, a following series of negotiations, or just one, would have included the participation of a supra- ordinated officer ( . in image . ) such as the security manager or an officer sent by him or her on the wing to try negotiating a solution to the issue at stake or to what had already happened. in other words, before the squad arrives, all other sorts of soft-power (crewe , ) would have probably been in the picture in a way or another. it should be clear, though, that usually, the majority of the dozens of critical issues emerging daily on the asylum's wing would either turn to a positive end – to the de-escalation phase (phase in image . ) without further need of any explicit symbolic threat by the emergency squad – or would be left 'unnoticed' by officers turning a blind eye, avoiding, by doing so to construct a new critical event. this ethnography clearly support crewe’s ( ) interpretation of the relevance of soft-power even in such a violent custodial setting. however, not only were new crisis exploding frequently, but also, 'finished' ones, could suddenly re-explode time and again in an interactional-chain. the situation was very dynamic; others would describe it as a battleground. soft- power would be always in the picture; soft-coercion and the threats implied in it, particularly the symbolic threat, would also very often reinforce it. the symbolic threat of coercion as 'interaction ritual': the squad marching in the symbolic threat of coercion was clearly an 'interaction ritual' (goffman ). it would be performed by the arrival of the ‘rank and files’ emergency squad on the wing ( . in image . ). depending on the configuration of each particular critical event, the reputation of the prisoner(s) involved, the particular officer and head of the local chain of command on duty, as well as the presence or the absence of the researcher on the wing, the ‘squad’ would consequently enter the wing more or less rapidly, orderly and aggressively; it would be organised in one particular configuration or another, and would display one ‘face’ or another towards the prisoners. some inmates really look for trouble here...they insist, they call, and call again … they continuously call me or my colleague for no reason, or for fucking reasons ...they never have enough...they do not know what the verb 'to wait' means. do they think they are in a hotel [the metaphor of the hotel is frequently used by officers]? or what? some start banging the toilet doors; others threaten us continuously...we do not even hear them anymore. do they want a lesson? they seem to be looking for it intensively now. no problem, we are here ready to please them whenever they wish to (field note). the practice of the symbolic threaten of coercion was, each time, performed in one particular way and with a particular squad's organization. the ethnographic picture (image . ) – here simply used as an illustration (just as a visual field note; see, appendix) – shows one example of the squad arrival on the wing during a critical event. each time the squad would arrive on the wing, the wing's atmosphere would change accordingly; often becoming more quite; occasionally becoming more explosive instead; hardly ever the situation would remain the same. the squad would enter into the wing ritualistically and, more often than not, would firstly approach the prisoner(s) paternalistically (when the ethnographer is in the picture), like an old grandfather would try to explain to his grand-son to change his attitude before something else more serious would follow as a punishment. despite the officers' slow movement and low tone of voice, the quasi-military hierarchy characterising the chain of command (infra, chapter ) would be properly displayed by both the configuration of the squad, and the proxemics of its members. the local commander would be heading the squad authoritatively; while in his absence, either the responsible of the security, or any other senior officer in charge would substitute him; then the other officers would follow directly afterwards. the position of each officer within the squad's configuration would often be related to the grade, seniority or even the greater or less desire ‘to be part’ of the action actively. at that stage, no real physical confrontation, nor assault, could happen yet; the officers would be on one side of the gate, and the prisoner(s) on the other. in these circumstances, all activities on the wing would be immediately suspended. medical staff would also stop their activity with inmates, without any formal invitation by the squad. in such a situation there would be a momentum for a negotiation to start. at least some tools of negotiation, either symbolic ones like a quite long chat, or material ones such as a cigarette or, more rarely, a cup of coffee would be employed by the head of the squad in an effort to open a dialogue and resolve the dispute. sometimes, different solutions would be discussed time and again between the head of the squad and the kept; seldom, however, the situation would quickly turn to a very conflictual one. usually, the situation would slowly calm down and come to an end becoming, in officers' words 'just another boring deja vu', or 'a kind of social worker's job' at least temporarily; yet occasionally, the situation would not ameliorate quickly enough – if at all – and it would suddenly move to the next phase of the credible threat ( . in image . ) or directly to bodily coercion (infra, chapter ). the prisoners’ reactions to the squad arrival on the wing occasionally, the squad arrival was followed by a sharply increasing level of protest; some prisoners – both with or without a psychiatric condition – might have been disturbed in a way or another by the arrival of the emergency squad and would start shouting and yelling all kind of insults towards the officers. some prisoners might have felt humiliated, others provoked; yet, others might have felt powerless, desperate, annihilated, and so on by such a strong here, we refer to issue occurring when prisoners are locked uo in their cells, either alone or with a fellow prisoner. symbolic presence on the wing; some might have remembered their previous ‘fight’ with them, their arrest, or just simply 'hate any guy with a blue uniform'. sometimes, a sharply increase of the level of protest after the arrival of the squad occurred because of the previous potentially critical event performed by a different prisoner had not been taken seriously enough into account – the squad had not arrived on the wing in that previous occasion. by feeling not to be seriously acknowledged – not as much as his fellow colleague that caused the arrival of the squad just now – that particular prisoners(s) might feel his (their) reputation at risk with his (their) fellow inmates. in order to save the face and regain or enhance one’s reputation, one particular inmate might consider to retaliate the squad by giving them serious trouble in return; serious repetitive troubles observed have been, inter alia, inmates barricading inside their own cell, destroying it completely and/or flooding it with water, ‘staging’ a suicide or other 'minor' kind of self-harm thereby trying to stimulate the squad’s (or medical staff) immediate intervention or respond to a personal need of any kind, not necessarily and/or only limited to resistance. in one occasion i observed (and photographed the aftermath) of one chain of interaction in which one inmate would repeatedly destroy one cell after another for three times in less than one hour and a half; and his justification with the guards was that they had to start taking him seriously at least responding to his requests promptly. as he said ‘at the end, it is your fucking job, isn’t it?’ it is hard not to think he was at least partly right in his resistance; yet about the method, they were surely completely illegal. it was in another way a strongly physical and violent interactional chain, yet, it had a particularly strongly most of the suicidal attempts where described by officers as mise en scene by which prisoners called for attention. yet, i knew at least one of those who would frequently just call for attention. eventually, he committed suicide in his cell at night. communicative meaning as well, at least in his actor expressed intentions with which he communicated and at the same time, threatened the officers dealing with him. that particular situation, however, occurred at the beginning of my fieldwork and nothing happened to the prisoners, at least until i was sent off the wing by the squad. at a certain point in fact, the head of the squad told me that the situation was too dangerous for me to stay there and urged (not to say ordered) me to move away quickly. afterwards, until the end of the fieldwork, i have hardly ever been sent away from the scene – only if new officers who did not know me were heading the squad which happened but a couple of times – nor did i experience such a 'lazy and relaxed' response to a violent and threatening behaviour again. usually, in fact, in those cases, officers would react to such a provocative violence accordingly by moving the situation to doing coercion bodily at least to constrain the prisoners. the outnumbering force of the squad (crewe ) was indeed a symbolic display of physical power that normally properly worked to direct the dispute to a reasonable outcome without the necessity to move the interaction to the next stage of a violent physical confrontation (psychological violence was already there). however, in many occasions, the situation would relapse or would not calm down quickly enough again, thereby evolving at least to the next stage: the credible threat of coercion ( . in image . ); or directly to hard-coercion ( . in image . ). threatening coercion credibly: ‘wearing gloves’ and/or 'moving fingers' it took me more than one year and the observation of many emergency squad's interventions to start comprehending the crucial importance of the distinction between the officers' symbolic threat of doing coercion just discussed in the previous section, and the officers' credible threat (campana and varese would call it credible commitment) of doing coercion in focus here. this distinction is relevant theoretically because it helps shed some light on a crucial hidden dimension of officers’ jobs; a dimension often denied in public discourses if not in legal documents ; moreover, and more importantly, it is relevant for the keeper and the kept for the implication it has on their own lives, as well as, concurrently, for the relevance of the issue on the keeper-kept communication with one another. the discovery of a set of scripts (wieder ) used by officers to transform their symbolic threat on the wing to a credible one have been crucial and occurred unpredictably. before, addressing those scripts and explaining the peculiarities of credible threats, however, i now briefly return to some relevant ideas on the issue of threat and commitment by briefly surfing the field of ration choice. it is important however to bear in mind that, neither popitz, nor rational choice theorists or prison ethnographers have focused their attention towards prison officers ‘doing’ threats; usually, they instead address threads produced by 'criminals' or by inmates in the 'underworld'. although the definition of violence in the poa reads: 'any incident in which a person is abused, threatened, or assaulted. this includes an explicit or implicit challenge to their safety, well-being or health. the resulting harm may be physical, emotional or psychological.’ (home office : ). it is usually implied that prisoners threat officers; officers ought not to threaten inmates. more explicitly it reads, about defusion startegies that 'staff should adopt a non-threatening body posture: [...] use a calm, open posture (sitting or standing) […] reduce direct eye contact (as it may be taken as a confrontation) […] allow the prisoner adequate personal space […] keep both hands visible […] avoid sudden movements that may startle or be perceived as an attack […] void audiences – as an audience may escalate the situation. more importantly, it readsnever threaten: once you have made a threat or given an ultimatum you have ceased all negotiations and put yourself in a potential win lose situation (home office : ; emphasis and bold eliminated). understanding threats through the rational choice lens: a short note chapter introduced popitz ( ) phenomenological perspective on threats which was used in this thesis, yet ex-post, to frame the theoretical concept adopted to analyse the observations of officers threatening and ‘doing’ coercion on the landing. here, before continuing, it is useful to briefly consider the work of few scholars – more or less situated in the rational choice theoretical framework – who also addressed the issue of ‘doing’ threats in a useful way (inter alia schelling ; ; gambetta ; campana e varese ); that theoretical perspective can be useful not only for those embedding it in their own research agenda, but also for any ethnographer dealing with observational data of interaction chains dealing with ‘doing’ threats in a way or another . according to schelling ( ) and to gambetta ( ), the threat is by its nature first of all a communicative act. following schelling ‘[i]t is no more than a communication of one’s own incentives, designed to impress on the other the automatic consequence of his act’ ( : ; emphasis added). he then enriched the issue by saying that a threat is not only communication; particularly so, ‘when one threatens an act that he [or she] would have no incentive to perform but that is designed to deter through its promise of mutual harm’ ( ; emphasis added). despite being imbued in rational theoretical thinking and vocabulary – which differs greatly from the one adopted here based on observation and an ethnographic micro-sociological approach – schelling’s section on threat ( – ) is indeed a very useful tool that ought to be taken into account seriously. schelling also introduced the very ideas of credibility and commitment – as campana and varese ( ) showed – writing about threads, already in although it is true that schelling addresses threat already in as is shown in what follows, it is true that in his last work ( ) a direct or indirect influence of popitz work appears between the lines. by arguing that ‘the threat’s efficacy depends on the credulity of the other party’ ( ). schelling showed some theoretically grounded options about possible commitment during a threat interaction: one can of course bluff…the one making the threat may pretend that he erroneously believe his own cost [i.e. the consequence of the fight] to be small….he can pretend a revenge motivation so strong as to overcome the prospect of self-damage…one may try to stake his reputation on fulfilment, in a manner that impresses the threatened person. one may even stake his reputation with the threatened person himself, on grounds that it would be worth the costs and pains to give a lesson to the latter if he fails to heed the threat (schelling : ; emphasis in the original). most importantly, however, schelling also stated that a threat intercourse is a field of uncertainty in which, it can be implied, both intended and unintended consequences are at stake; ‘in threat situations…commitments are not altogether clear; each party cannot exactly estimate the costs and values to the other side of the two related actions involved in the threat’ (schelling : ). he then continued, that ‘the process of commitment may be a progressive one, the commitments acquiring their firmness by a sequence of actions' (schelling : ; emphasis added); and that is particularly interesting here. before concluding his section on threat, schelling reinforces the role of the idea of credibility stating that [i]t is essential, therefore, for maximum credibility [of the threat], to leave as little room as possible for judgment or discretion in carrying out the threat. if one is committed to punish a certain type of behaviour when it reaches certain limits, but the limits are not carefully and objectively defined, the party threatened will realize that when the party comes to decide whether the threat must be enforced or not, his interest and that of the threatening party will coincide in an attempt to avoid the mutually unpleasant consequences. (schelling : ). avoiding ‘the mutually unpleasant consequences’ is something that may be in the picture or not, depending on the particular actors involved, their commitment, their social position, the personal idiosyncrasies at stake; yet, it resonates well with collins’ idea of the difficulty to enact violence (collins ). although these aspects can be denied and neutralized in public discourses and official documents such as the british prison officers order on the use of force (home office ) and the italian equivalent , those particular aspects influencing any particular interaction based on threat have been clearly observed on the field. despite the theoretical relevance of rational choice, adopting ethnography and observation here, rational choice insights must be considered with caution. popitz’s ( ) phenomenological work, instead, remains the crucial theoretical work to shed light on the empirical data within our framework grounded in the interactionist, micro-sociological tradition (infra, chapter ). observing officers doing credible threat: unpacking officers’ scripts over a long period of observation, two scripts appeared to be particularly relevant inter alia to transform what i just now called a symbolic threat into a credible one. the first script would be that in which one or more officers of the emergency squad would start to wear gloves while being in front of the prisoner(s) already performing a symbolic threat. the other, with a very similar meaning, would be that in which those same officers, or others, would start to move fingers instead. see the italian prison officers’ rules (law december, th , n. : ‘ordinamento del corpo di polizia penitenziaria.’ by adopting those two scripts officers would communicate and 'signal' (gambetta ) with one another, as well as, interactively with prisoners that the situation was approaching a violent turning point: the use of bodily hard- coercion and the entrance in something similar to what collins described as 'the tunnel of violence' ( ). by starting to perform one of those two scripts, each officer would propose to his own fellow colleagues – without necessarily saying anything verbally – to follow him and move on to the next level of the intervention (from . to . in image . ), thereby 'finally stopping bullshitting’ (field note), or as another officer told me, just before the intervention: now let's stop it! who do you think we are? social workers, or what? should i waste my time discussing endlessly with him? do you think i am crazy? should i become crazy too? it's simply too much...you see it by yourself...do you?' (field note). eventually, in that particular occasion, 'tactics of talk’ achieve[d] compliance’ (liebling and tait : ) and the situation deescalated accordingly. that situation could be simply read as one possible outcome of the cycle; yet, fleshy human being with their own emotions, cultures, and idiosyncrasies interacted face-to-face and more or less efforts were made on either side to come up with a solution or head on to a physic confrontation. depending on the particular situation and the particular actors involved in it, more or less favourable conditions would be in the picture turning the situation more likely in one direction or another. pino is a young man in his twenties sitting at his clean light-brown wooden little desk in his quite dirty cell one morning in september ; he is italian, proudly coming from the north-east of the country, quite tall, muscular, usually quite deferent with officers and well- known to be very stubborn and not that friendly with his fellow inmates. he is bald, blue eyed, with a small scar on his face under his left eye and some small hand-made greenish prison tattoo both on his head and on his hands. he is wearing a grey nike jumper, a white singlet, red underwear, no trousers, and slippers. sitting on his chair at his desk situated near the barred door facing the wing's corridor, he is calmly having breakfast: coffee and milk, biscuits and one fresh orange he has kept from the previous dinner of the day before. once he finishes eating his orange, he stands up, as usual, and lights up a cigarette smoking it slowly while resting his elbow on the barred door. he shows (or better, displays) a smiley face and a relaxed attitude to me. he definitely seems to be calm; the wing is not that noisy either in that particular moment. just, occasionally, some staff moving back and forth with their metal carts creaking loudly. just the usual routine. prisoners screaming, others calling; yet others laying on the bed and seemingly watching the roof or the outside world. a lot of cigarette's smoke is in the air, as usual. the telephone rings at the prison officer box at the closed wing; the security manager alerts the wing officer that a newcomer is arriving soon on the wing and that a place, any place, was therefore needed to allocate him. the newcomer will be entering the institution coming from another one where he had created too much trouble; yet, they already know him in the facility and the wing officer does not show any particular apprehension for his arrival. the officer had already silently told me before about the arrival of the ‘troublemaker’; he knew it already. the officer had defined him an ‘old friend of mine [of his]' using a sarcastic voice. a new prisoner's arrival or departure is nothing new in the facility; nobody would either display any particular attention, or curiosity, for such a mundane occurrence; yet it was very different for me. it was one of my first days on the wing and, at that stage, i still felt both excited and overwhelmed by the idea of seeing a new prisoner being escorted into the wing and afterwards locked up into a cell in front of me. i was concurrently 'kind of' worried and feeling strange for the prisoner's arrival: i was experiencing it first- hand and for the first time. the officer giuseppe (not his real name), was instead worried simply because he said there was 'no fucking place to put this new one; he'll give us lots of trouble...he surely will! i know him very well, believe me.' he bluntly tells me that all 'easy' prisoners have already one or more fellow prisoners with them in their cells. those that are still alone 'should better stay alone...they are left alone for a reason... they've already created enough trouble each and every time they have put someone else with them in their cell.' about three hours have passed quickly. only ordinary problems are in the picture on the wing. the same usual smell of the combination of encrusted dirt, sweat and food is in the air. before lunch, i have stayed for quite some times downstairs, where most of the senior officers' and psychiatrists' offices are, following the new prisoner's 'welcome' procedures, medical and psychiatric visits, and social worker’s interview, just staying together with the officer escorting the prisoner from one place to the next one. the security manager share his idea with the wing psychiatrist, the wing nurse, and one wing officer as to where to put the new prisoner. eventually, they agree on the decision to throw the newcomer into pino's cell. giuseppe tells me about that decision explaining me the two reasons that justify that decision. 'today, pino is the only really calm prisoner still living in his cell alone...let's say. not too agitated'. then, the officer adds the second reason. 'pino is under psychiatric assessment; he’s very close to be relocated to the open wing just upstairs'. having been committed to reach that goal thereby gaining some freedom, he is not likely to behave badly with the newcomer. the staff quickly agree with this decision which is the outcome of less than ten minutes dialogue in front of me. the psychiatrist says 'luigi, i am sure he will cooperate. if he creates too much trouble, then, tomorrow, we see what to do. pino is a criminal [meaning not a psychiatric patient or someone with psychiatric issues], he sometimes behaves like a criminal, but he is definitely not so stupid to misunderstand the chance we are giving him to gain his promotion to the open regime'. the psychiatrist then adds: 'do you think it is really a problem to pass a couple of nights with someone in your room?’ [i do not think it is as irrelevant to the human being locked in as the psychiatrist pretend it to be, but i do not respond to the question]. ‘he’s an experienced prisoner and he knows we do what we can do. there is no other possibility now...tomorrow we’ll see and, if possible we will reallocate the newcomer to a new wing. by now, it's simply like this and he has to accept it whether he likes it or not... i am confident he will be cooperative, though.' in the past pino had some minor psychiatric problems; at the moment, however, he is ok. he is 'well compensated' as the psychiatrist, and consequently almost all the other medical and custodial staff would put it. yet, he usually shows aggressive attitudes and becomes violent time and again for 'minor reasons’. 'it’s not strange here in prison, is it? don't forget that pino is a criminal, just like many others on the landing. he has always been like that on the outside as well, it’s his nature, and he is used to do like that' concludes the officer giuseppe. suddenly, the phone rang again. the officer emphatically told me: 'arriva!' (he is arriving!). the officer then adds that the new prisoner will arrive at the wing’s entrance in a moment, escorted by a group of his fellow officers. at that stage, the decision was taken; the moment arrives in which the newcomer would be urged to enter pino’s cell in a way or another. as soon as pino meets the newcomer's gaze, he starts to yell to him 'bastardooo!!!bastardooo!!!se entri ti ammazzoooo!!!' (mutherfucker, mutherfucker, if you step in i will kill you). the newcomer stays still, saying nothing, looking towards pino aloof; pino's face turns red and his attitude, as well as visible emotion, escalates quickly. he screams as loud as he can, possibly in order to display his anger and toughness to the new guy who is going to enter his cell anyways, sooner or later. now, a decision is taken. the wing’s officer calls the security manager who already knows the guy and simply decides to skip the talk and directly send the emergency squad, instead; they arrive on the wing in front of the cell in less than three minutes; there are only four of them, plus the two escorting the prisoner and the wing officer: seven in total. the little squad had arrived slowly, simply walking, displaying a very annoyed attitude because, once again, pino resulted to be untrustworthy despite all efforts they had put over the last months 'to help him in all the ways permitted by the prison rules and beyond, and all the times they forgave him'. they arrived, just now. the newcomer is quickly pushed out of sight of the wing by the two officers escorting him. pino is really behaving unreasonably despite all officers' efforts to convince him by talking calmly and with a soft tone of voice; he accepts no reason, no justifications, and he pretends with his behaviour and screaming to be committed to kill the guy. 'i don't give a fuck if i will have to stay stuck in this fucking shitty wing all my life. that shit will not enter in my room! no way!' the arrival of the squad does not help to deescalate the situation. yet, knowing the particular officers at stake in that particular occasion, i feel they are trying to do their best; well, one is showing to be in 'the mood for an intervention'; the other three are doing their best and suddenly, pino starts to dismount his metal mountable bed in an attempt to destroy the ceramic washbasin or to barricade himself inside the cell just like he has done a few times before the previous days. the four officers are just a few steps from me and less than one meter of the cell's barred door. one of the officers starts cracking his fingers, another just a couple of seconds afterwards put his brown leather gloves on and take the cell’s key in his hands. suddenly, to me unpredictably, the situation turns up- side-down. 'pino starts saying 'no, no, no, please no, ok, ok, call that shit! and make me talk to him.' in the meanwhile all four officers have put the gloves on, either dark-brown leather or light-blue plastic disposal ones. the tension is very high, the officers show no patience anymore; fortunately for pino i am there, and they do not trust me at all, yet. i step backwards a couple of meters. one officer screams to me 'move backwards!’. i step backwards towards the entrance/exit of the wing. just a few seconds afterwards, the wing officer shows me, with a sign of his, that i was welcome again on the scene and everything was alright again. giuseppe, the wing officer tells me that ‘pino has surrendered' (si è arreso). i do not quite get the details of what's going on; yet, the big picture is more or less clear. the head of the squad is explaining to pino that 'è finita bene' (eventually, it's all right) and that he must be calm and talk to his new room-mate. he then adds that they had already met him the previous year. they tell him that he is a quiet and clean boy, there is nothing to be worried about. pino answers that they [the officers] should be worried for his new room- mate, not for him. by doing so he displays his usual masculine attitude ad thuggishness. the head of the squad promises pino he would put all efforts to try to relocate the new prisoner as soon as possible, possibly already the day afterword if and only if everything would be ok the following night. if not 'you know what we are talking about'. then, he asks his colleagues to bring the new prisoner. pino meets him and accepts the bargain in change of the promise to be left alone as soon as possible and, eventually, to be moved to the open wing. giorgio has no choice but to do what he is ordered to do, and consequently, he enters the cell leaving all his belonging outside. the emergency squad left just now. giorgio is together with his new cell-mate in their cell. one of the agents is not happy with the floppy end of the intervention because, he tells me later on, in front of a cup of coffee, that he cannot stand anymore that guy and his childish behaviour; he tells me bluntly that today they have lost a good occasion to teach him something. giorgio's trolley with the few belonging of his wrapped up in two supermarket white plastic bags is still outside the cell. the situation is calm now; pino is preparing a coffee with a moka on his light-blue butane camping gas; in italian prisons that's one of the usual welcomes to a fellow inmate into a new cell. one hour later, giorgio lies down on his bed and sleeps silently. pino exercises in the cell as if he were alone and looks quite relaxed again. the situation is back to normal, yet, hard coercion has almost been performed; yet coercion is clearly there; in fact, both of them are locked up together against their will in the same cage, you can either decide to called cell or room (vignette . ). simply by accepting or refusing the scripts and, consequently, wearing the gloves versus not wearing them, moving hands versus not moving hands, or cracking fingers versus non cracking them, officers would be able to coordinate their next move with each other. eventually, they would follow all together the strategy decided by the head of the squad, either continuing to perform soft- coercion (symbolic or credible threat) or to jumping to exert hard-coercion by opening the barred door and start fighting. a moka is the metallic machine usually used by italians to prepare coffee at home. mario is a thirty-two-year-old man; he now lives only four cells away from where pino lived only a few months before. he is also italian; in that wing most prisoners are; mario comes from the capital, rome, but he is a lazio fan [and not a roma soccer team‘s fan]; i should better say a lazio hooligan, using his own words. he is middle-aged, white-haired and quite thin. he has been on drugs for many years and spent all his adult life going in and out prison for both petty, and not-so- petty crimes. being addicted to cocaine, a substance hardly available on that wing, he is now using any escamotage available to get high, such as inhaling butane gas or heavily misusing psychiatric drugs he is able to obtain through informal trade in a way or another either on the wing or at the yard. a market of such drugs is clearly at stake in the psychiatric hospital, they say; (yet i have not witnessed anything like that). mario is slightly racist and does not hide it at all; he seems pride to be racist. therefore he has a formal ban to encounter black and north african prisoners. he can neither walk free if any prisoner with such characteristics is there and vice-versa; nor, can he go to the yard to do exercise with them. a ban service order is issued daily listing all the inmates who must not encounter a particular group of person or a particular individual(s) and is available in all posts and in the wing officer's box. mario is small and thin but has got a reputation of being a good street-fighter anyway. he lives in a cell with another guy from rome. he once told me that he does not like his cell-mate that much, but that guy is rich and generous offering cigarettes and coffee to mario for nothing in return but company: he is very talkative and cannot stand to stay alone. his cell is a few steps away from the prison officer 'box' where i often sit with the agent on duty who should be walking back and forth all the time 'like we did before' as one senior prison officer put it. mario had been living there for more than four months; his cell-mate a few months longer than that. mario sarcastically calls that room ‘my home'. the cell is quite dark inside, the walls are light-yellow like in many italian prisons, particularly dirty though, with lots of drawings and phrases written on it, as well as, some visible blood spots of previous fights or self-harm that remained there during all the ethnography. reggio emilia custodial institution has no always the money for the prisoners' toilet paper [i experience three days in which toilet paper was not available to prisoners and they were told to cope with it as they could], let alone to buy the wall-paint. following these issues, such as that of the missing toilet paper would take us far away from the topic and i return to the point. the barred window is in fact almost all covered by weekly paper's spreads, mainly catholic ones taken and distributed freely by the chaplain to both the keeper and the kept, and few porno images that circulate in not such a high proportion as normally is the case in other facilities. the remaining part of the window is clear; yet, a worn-out small linen dark-purple tissue is pretended to be a curtain to completely obscure that barred window in order to sleep better at night. that is only exceptionally allowed because both prisoners apparently present no sign of any suicidal risk. in mario's cell, images were directly taped on the glass, one next to the other forming a quite colourful collage when the sun hit the wing from behind. most of other cells' windows are clean; instead, images are usually taped on the room's walls. every now and then, images are removed off the wall by officers and the dirty and old fading yellow paint remains visible with all sorts of spots on it. today mario is agitated, 'for no reason' a nurse tells me. just now, he was not allowed to go to the yard with the others fellow prisoner of the wing because it was john's turn, a senegalese guy who cannot encounter mario for the reasons said above. mario can go to the isolation yard alone, if he wishes to; but he doesn’t. this afternoon mario is allowed to go to exercise with his fellow prisoners and john must stays in the cell accordingly. only one officer escorts all seven very dangerous inmates to the yard with no handcuffs or any other restrain tool: they, strangely enough, cannot be used inside in any normal critical event; in fact all prisoners must move freely inside during escort all the time independently to the situation. if it became necessary, as much as ten officer can come to block him and to re-put him where they have to. this is what seems to be prescribed in italy by law; at least what they have told me and what i have seen time and again. however, to be honest, by law many officers should be escorting such a group of dangerous prisoners any time they are out of their cells; yet personnel is missing and some officers show off their masculinity doing such dangerous duties alone. usually, they are maximum in two or three, anyway; without baton, shields, protections or anything to defend themselves the possible confrontation is very likely to become a very violent one. however, all those tools and weapons are forbidden inside the wall and ‘can only be used in exceptional circumstances after the governor's order to do so, at least theoretically’, one senior officer told me. then, if any crisis arises, the emergency squad arrives accordingly. i am at the rear of the group of prisoners when the officers is escorting them to the yard. the officer is at the head of the group. the officer let the prisoner enter the yard and he and i move into the officer room from where the officer is supposed to monitor the yard. there are seven prisoners ‘out there’ in the yard. two of them are sitting on one of the benches on the other side of the yard facing the glassed room in which we observe them. some prisoners are chatting with one another, while others are sitting alone or running. afterwards, mario and other three of them are walking watch-wise circles around the perimeter of the yard, just like in any prison-film's scene of the kind. the last prisoner is running back and forth following a straight line approximately at the centre of the yard. i am observing them, and i am trying to sketch their movements in the yards sketching some kind of drawings of their movements on my paper small notebook and my pen. something i have been doing for some time. suddenly, i see mario behaving strangely. he is smoking, and at the same time he is shouting to another guy in his group who is also behaving visibly abusively, apparently for no evident reason. just a minute or so afterwards, the second prisoner unpredictably punches mario repeatedly very strongly on his face. after three punches or so mario fells down on the floor and starts bleeding heavily but shows no reaction. in the meantime, the officer continues to read 'i ragazzi di salò' which has been there during the entire ethnography with a couple of weekly magazine. mario is on the floor with both his hands holding his own face. he is bleeding very intensively (at least in my understanding). the guy who punched him just now, picks up mario's cigarette from the floor and starts smoking it like if nothing had happened, finally looking relaxed and is walking around. after a moment mario is again on his feet visibly traumatised; his nose and mouth are covered with blood. he is moving slowly towards us (the officer and me) on the other side of the bullet-proof glass, screaming something we cannot not hear clearly because the bulletproof glass interrupts any audible sound making communication almost impossible. reading his lips and simply seeing his face almost completely covered with blood, though, i clearly get he is calling for us to help him. to me the situation looks like an extreme severe one. however, there is neither a system of microphones, nor video surveillance working over there. no doubt he is shocked and needs immediate help; moreover he needs medical care. i tell the officer that something is going on out there. apparently annoyed by my interruption, the officer is looking calmly to the scene and suddenly asks me if i had seen anything of what had occurred. i reply telling him the scene i had observed. now, he is walking to the blue yard gate asking 'what's up? what's up? who has started? why can you not stay quiet and enjoy some fresh air?' and so on. on the other side of the yard, one young blonde prisoner with a red and white ajax t-shirt stops running and is now crying sitting on the floor at one corner of the yard; he is a first-timer and possibly is not yet accustomed to these kind of 'usual', yet shocking, situations; or, maybe, he cannot get used to these situations and he is simply traumatised and psychologically damaged by all that. the guy who just now punched mario has long dark hair and seems to be emotionless. he is now walking around the yard with no clear direction; he watches severely anybody trying to approach him in any way. one older prisoner, a mafia convict with a life sentence who is usually well respected inside by his peer, tries to calm the perpetrator down as well; yet, unsuccessfully this time. the situation continues to be critical because in the meantime two other prisoners are pushing each other about fifteen meters away from us. the officer who had already asked for a colleague intervention to escort the bleeding prisoner to the infirmary, must now phone the security manager to ask the squad to come asap. he cannot do anything alone, but waiting for the squad to arrive. they are here in a moment and all of them already have their gloves on; buy doing so they are signalling to the prisoners they do not intend to joke. they ask the officer 'patrolling' the yards what happened'. he answers that 'aziz punched mario'. they looked through the glass 'kind of' studying the situation for a short while. mario is already nearby the barred gate to the yard waiting for anybody to help him, crying out his emotion and pain. the emergency team considers mario's situation not serious enough and makes him wait. some prisoners are in fact pushing one another; others are looking from a distance with anger. the guy who had punched mario is still nervous indeed and does not show any intention to go back to the wing before creating some new troubles. the situation looks very serious, at least to me. the head of the squad does not seem to agree with me, though. the squad runs to the gate and stopped just a moment before opening the barred gate and entering the yard. anyways, the head of the squad decides to go head on to a confrontation after initially showing a formal intention to try to open a dialogue with the recalcitrant violent prisoner. the guy who assaulted mario for a cigarette that mario did not intend to share with him, takes out a rudimental razor blade and displays it bluntly to the officers. some officers become really nervous for what they read as a provocation; yet, others are visibly urging their commander to allow them to 'stop bullshitting' and jump on him. a four-meter-high, blue, barred gate still separates the one from the others. officers are still outside the yard and the principal officer continues to look for a dialogue. the guy is very furious and continues to yell pretending to control the situation violently. suddenly, the principal officer starts to move his fingers continuously opening and closing both hands repeatedly; from that moment it was clear both to me and all the ones observing the scene that there wasn't any time left for dialogue. the officers start to step on toes quasi-synchronously and continue to move their hands watching with a threatening gaze the guy who seems to be indifferent both to the officers' dialogue and threats. all other prisoners are kind of blocked and quite slowly move backward from the scene. no one else is moving anymore. only the guy who hit his fellow prisoner continues wandering around. suddenly, the head of the squad watches his fellow officers and, holding the key in his left hand clearly displays that 'it is now time for action' by inserting the key in the lock. the tension is very high; even the prisoner who had been crying most of the time, stops doing so. there is a strange silence there, and everybody is apparently minding his own business showing either indifference or deference to the authorities. as soon as all the seven officers, few of whom visibly nervous (maybe also due to my presence) crossed the gate and enter the yard running toward the guy who had punched mario and who had been holding the weapon for at least ten minutes or so, pretending to control the situation, immediately throws the blade on the floor towards the officers. then, screaming 'stooooppp!' he raises his hands in surrender; yet, his face remains completely emotionless. two officers escorted him upstairs to his room. afterwards, all the other prisoners are escorted together upstairs to the wing and, then, mario is allowed to walk to the infirmary to be visited and to be medicated. the doctor diagnosed that mario had lost two teeth in the aggression, and that his nose was broken and that he also had some small wounds. in doctors' words 'nothing serious'. afterwards, the security manager ‘issued a ticket’; mario did not sue the aggressor; he was too afraid to do it. despite being keen yard attendees, mario stopped going to the yard for some time; eventually, his aggressor was transferred and mario started to attend the yard regularly again.(vignette . ). those officers’ scripts observed on the field were seemingly comprehended by almost all prisoners who normally changed their behaviour accordingly, if they intended to timely stop the escalation of the situation. at that stage, in fact, there was not so much time left for the prisoner to decide whether to stop the fight or accept the challenge and get ready for it. by accepting the fight, prisoners would oblige the squad to act accordingly. the situation would evolve quickly, minute by minute. it would be characterised by a very high tension (collins ); if the prisoner would not take the 'right choice' suggested by the officers' threat (popitz ) the officers might feel obliged to behave accordingly not to lose their face (goffman , b, ) and or reputation (popitz ); the escalation could also occur due to the growing tension and excitement escalating either among officers or prisoner(s). a very high level of tension would, more or less slowly, move towards a non- negotiable end: the decision to open the gate and doing hard-coercion. at that stage, the situation would be developing quickly and any act could easily produce unintended consequences on both sides of the barred door; particularly so with particular prisoners and or officers. hard-coercion might enter the picture because the prisoner, interpreting 'the gloves' as an act of hostility toward him and his reputation or as a provocation, might start to insult, threaten, and to display the intention to punch the officers through the gate. consequently, the barred door could be opened at any time afterwards, thereby starting the fight. untrained officers; just doing coercion as usual at this point it is useful to note that only few, if any, italian prison officers have ever had any training on de-escalation tactics, let alone psychological training or human rights 'bullshit' (none of the ones i interviewed or met had had any at all). this is of course particularly problematic in situations in which emotions can easily turn the situation out of control. among base grade officers, sometimes governing all the wings in practice, even the old and basic de-escalation tactics used in england and wales back in the s – the minimum use of force tactical intervention – are completely un-known; many of those base grade officer regularly play box, thai-box and karate for 'self-defence' or 'for fun' instead. one senior officer explained me: we [prison officers] are prepared and instructed to do something else. a long time ago i did a course on becoming a prison officer, a very short one, lasting only three months. in those few months the only thing they taught me properly was to defend myself and beat others in combat with no pity. ok? my teacher told us that the best form of self-defence was to attack, then (laughing)... [w]hy should they [psychiatrists, doctors and nurses] call me [to help them] whenever a madman goes berserk? i intervene to procure pain [on those occasions] and not to cure the patient. i am not interested whether he is forced to gasp for air, bang his head [against the wall or the bars], or whatever... from my point of view, though, i just try to take him by the neck; in fact, i try to decelerate his breath, but i do not know what i should do. i simply learned by doing that whenever i take him by his neck he stops resisting (video-recorded interview with a senior officer). ‘wearing gloves’, 'putting them on theatrically', moving fingers, or cracking them were the most common ways officers used to clearly mark the near escalation of the situation from the symbolic threaten of coercion to the credible and nearby use of it. of course, even what i called credible threat is symbolic; after all it is only a communicative act of violence, and not an actual form of physical violence; yet, it might well be interpreted as a symbolic violence, or as psychological violence (cohen and taylor ; crewe ). conclusions during violent encounters, the unfolding chain of the emotionally charged interactions are often the key factor to determine the outcome of a potentially violent confrontation (collins , ). in this chapter, i have stressed the role of soft-coercion in ruling a problematic wing and its relation to soft-power; an issue often only sketchy considered in prison literature so far. i have shown the two main phases in which soft- coercion would usually be displayed and bodily enacted in practice on the wing, unpacking the ways in which both the symbolic threat and the credible threat of coercion would usually sequentially unfold in actual interactions. on one hand doing either symbolical or credible threats would effectively help minimise the actual emergency squad bodily hard interventions; on the other it would strongly impact on prisoners' day-to-day life, emotions, fears, and trauma, as well as to some officers' ones. by doing so, this chapter has attempted to demonstrate the crucial role that 'threatening and being threatened’ played at a wing level on a daily basis. it was clearly crucial there in reggio emilia, italy, and probably far beyond; yet, this is an empirical issue that should be addressed empirically. the issue is noteworthy and prison researchers and governments cannot simply continue to turn a blind eye or to deny it completely. however, this field work shows that the micro-sociology of violence cannot be blind and focus only on the interaction as such without taking into account other sociological dimensions already studied by fellow colleagues. inside, at least, the particular subjective prisoner's social and power position, not only strongly influenced the probability that coercion would be threatened or used in practice against that particular prisoner, but it would also strongly influence whether or not one particular event 'caused' by a particular prisoner would be defined critical or not, and even if it would deserve any consideration. this last issue about labelling deserves a much closer attention, and a specific research because it also influences who, how and how often, is more likely to be the target of the next intervention, quite independently to the facts by which the same intervention will be justified either formally or informally. prisoners were consistently treated differently from one another; it is what the literature call discretion. two extreme examples i repeatedly observed in the field were, on one side one young man who grew up in a rome camp that was hardly ever taken into account, and, on the other a mafia 'boss' who, as one senior officer, probably exaggerating put it, 'he is at home here; he can do whatever he likes...he is a gentlemen and we all like him'. these were extreme examples indeed, yet, many other less extreme ones would also support the same point. discretion is a structural dimension of the situation as is clear in the prison literature almost from the outset; yet it is very problematic and could introduce racism, homophobia and trauma in the picture, and therefore still deserve close attention. it is important to claim that not only the officers-prisoner interaction, but also the prisoner’s social position more or less strongly influences the course of all potentially threat of coercion and of bodily violent encounters. this became clear observing the intervention as well as the non-intervention of the emergency squad symbolically and credibly threatening coercion in a wing of an italian asylum time and again over a period of one year and a half. chapter the bodily use-of-force the police ideal is to dominate in every phase of confrontation. but in fact only a small number of them reach a high level of violence with any frequency (collins : ). in prison, as in all coercive institutions, there is always a danger that violence will be met with violence, that the response to individual assault will be institutional assault (coyle : ). physical violence and punishment of the body did not, and has not, disappeared but retains a central place in the repertoire of responses mobilized by the state inside prison (sim : ). chapters shows that bodily coercion is usually implicitly in the picture during day-to-day interactions between the keepers and the kept on the wing also when it is not clearly visible to the researcher. chapter shows that, more often than not, here i explicitly state that i have decided to tell the truth only partially. i acknowledge that i will not tell all the truth, hiding facts that i saw (or that i have been told) that i do not think to be relevant, appropriate or convenient to write about in here. reflexivity has long been considered a crucial feature of ethnography. unfortunately, however, prison research has very rarely addressed the issue of self-censorships straightforwardly. and i do intend to do it here. officer’s symbolic and credible threats suffice to solve disputes or other issues occurring on the wing. despite the fact that bodily coercion is not often there in practice, it does occur more or less regularly within the custodial complex under study. using force coercion bodily is the focus of this chapter. however i directly observed bodily coercion only less than a couple of dozen times; in few occasions i also saw prisoners manually constrained on the floor by a group of officers for as long as three hours. during the ethnography, then, i also observed a guy tied to a bed. eventually, the constraint-bed was removed from the facility as an indirect consequence of the o.p.g. scandal that resulted after the publication of the parliamentary inquiry commission report and the circulation both online and offline of video documentary pictures produced by the parliamentary inquiry commission that unveiled a situation of alleged abuse and institutional violence. this chapter will therefore draw on available observation data that might be considered insufficient or too anecdotal. however, for the exceptional nature of those data and for their uniqueness in the international literature, despite the scarcity of the actual observation of bodily interventions, they will be taken into account seriously anyway. nevertheless, in order to partially overcome that scarcity of observations writing the vignettes also photo-elicitation interview’s transcripts will enter into the picture (infra, chapter ) . chapter shows that interactionist scholars suggest that, violent-bodily interactions between actors are possibly avoided by any actor either within or beyond the wall most of the time: violence is rare and acting violently it is also not easy at all (collins ) . most people, in fact, according to collins and however, due to the thickness and sensible contents of those interviews, they will not be discussed here and will thoroughly be analysed in a forthcoming publication. once again, following collins, '[v]iolence is so difficult because it goes against our propensity to attune our nervous systems to those with whom we establish intersubjectivity. quite literally, persons in a conflictual situation, who are close enough to send and receive signals from each other’s face and body, feel the tension of simultaneously becoming highly attuned to each other, while trying to force the other to submit to one’s will' ( : ; others tend to prefer to simply threaten each-other implicitly, avoiding by doing so, both risking their own reputation, and forcing themselves into an unpredictable difficult situation that might be the unintended consequence of a credible threat. according to collins this would probably be true both 'out there', as well as inside the wall; yet, he calls for more research on the topic inside; this research, in part, is an attempt to contribute in that direction. however, regarding the easiness and difficulty of practicing violence this research suggests that the situation inside and outside prison might be quite different from one another, in particular if prisoners' violent behaviours and interactions are at stake. inside the wall, in fact, a particular configuration of the balance of contemporarily ‘civilizing’ and ‘decivilizing’ trends (dunning and mennell ) would characterize the penal institution; violence in some institutions, surely in reggio emilia, still remains a day-to-day occurrence as sim argued about twenty-five years ago (sim ; drake ); in italy and not only there, violence and coercion are usually hidden from the public gaze outside the wall (pratt ) and often ethnographers tend not to report the already limited aspects that they are allowed to observe for a reason or another (drake ). following pratt ( ), over much of the nineteenth and twentieth century '[a] system of punishment was established which on the face of it conforms to these values and expectations [of the civilized world] and which covered over its more distasteful, debasing features' ( ) such as using force. following garland: [i]n the development of manner and cultural rituals, a key feature which elias identifies is the process of privatization whereby certain aspects of life disappear from the public arena to become hidden behind the scene of social life. sex, violence, bodily functions, illness, suffering, and death gradually become a source of embarrassment and distaste and are more removed to various private domains. such as the domesticated nuclear family, private lavatories and bedrooms, prison cells and hospital wards ( : ; emphasis added). emphasis added). violence and police coercion are among the ‘disturbing events’ (garland : ) that the penal justice hides from the public gaze. ‘[t]he sight of violence, pain, or physical suffering has become highly disturbing and distasteful to modern sensibilities (garland : ). becoming the monopoly of the state, violence can only be performed by those authorised to do so: inter alia, the police and the prison staff: both custodial and psychiatric ones. in the particular custodial facility under study, crises have frequently occurred and violence has been a much more normal occurrence than in other either custodial or non-custodial contexts i had ever experienced beforehand. usually, in reggio emilia’s custodial complex, crisis would happen time and again in which violence would clearly be in the picture as previous chapters show; i.e. in self-harm and prisoner-to-prisoner violence and abuses (see also edgar et al. ). however, the situation would normally only escalate until the symbolically threatening point of the arrival of the emergency squad on the particular place in which a particular critical event had occurred (infra, chapter ); usually, after the arrival of the squad the crisis would start de-escalating more or less quickly (phase in image . ) thereby avoiding the danger of a violent officers’ intervention. the symbolic threat of violence performed by the arrival of the squad on the scene, a squad of well-known officers militarily organized in a platoon, would in fact suffice to temporarily end the crisis for a larger or shorter period of time. occasionally, however, the situation would anyway escalate until the point in which the emergency squad as a whole, or one or more of its members, would start to credibly threaten the prisoner effectively about the possibility of an imminent bodily violent intervention (infra, chapter ). in other words, the escalation of the squad would be likely, more often than not, to de-escalate the conflict before a credible threat is performed. whenever an interaction had already escalated to a credible threat, the situation would become quite unpredictable and even visibly unstable for the ethnographer experiencing it; the reputation of all parties involved would be at risk on the wing; at that stage any new officer's threat could cause another new prisoner's one in return, and vice versa. particularly so in italy, a country in which officers receive little serious training on de-escalation techniques, if any at all. furthermore, in order to be ready for the intervention, officers working on the squad, in their free-time, often practice sports such as box, thai box, karate, and so on for recreational purposes and for getting rid of all the stress accumulated on duty. prison officers boxing as amateurs, however, do not show the discipline and commitment brilliantly described by wacquant in his ethnography body & soul: notebooks of an apprentice boxer ( ); nor do they necessarily follow the moral commitment implied in that sport in which, following wacquant ‘[t]he brutality of the exchanges between the ropes is a function of the balance of forces between partners (the more uneven this balance, the more limited the brutality’ (wacquant : – ). prison officers' bodily intervention only slightly resemble the boxer’s fights. not only, because in those interventions there is a numerical disproportion between the parties while boxers fight one-to-one, but also because, according to wacquant, [d]uring a session [of sparring in a boxing training session], the level of violence fluctuates in cycles according to a dialectic of challenge and response, within moving limits set by the sense of equity that founds the original agreement between sparring partners— which is neither a norm nor a contract but what erving goffman calls a "working consensus." if one of the fighters picks up his pace and "gets off," the other automatically reacts by immediately hardening his response; there follows a sudden burst of violence that can escalate to the point where the two partners are hitting each other full force, before they step back and jointly agree …to resume their pugilistic dialogue a notch or two lower (wacquant : ). officers control violence differently. on the ring boxers used a ‘controlled violence’ governed by a principle of reciprocity ( ). ‘[t]he level of violence in the ring dictates that the stronger boxer not profit from his superiority, but also that the weaker fighter not take undue advantage of his partner's wilful restraint’ (wacquant : ). in the fieldwork bodily interventions were also controlled, in a way or another, by those involved in it most of the time; yet, the power relationships between the parties was of a completely different type. boxers do fight with each other on the principle of reciprocity; officers do fight against inmates (in case of bodily intervention) on the ground of their dominant position and their monopoly of the lawful use-of-force or coercion (terrill ). officers’ use- of-force is often likely to be lawful (or to be considered to be so by those exerting it); prisoners’ use-of-force is much less likely to be lawful; even much less so to be considered to be so. moreover, quite unsurprisingly, in the field, i have never heard of any officer practising yoga; some yet, did confess me that they have personally experienced some mental health problems but cannot disclose it publicly because, simply by doing so, they would risk losing not only their reputation among their fellow officers, but also their job. writing about police and violence – but it may apply to prison officers and violence as well – collins argued ‘[t]he inner culture of the police comes from the centrality of confrontation in their work’ (collins : ). he then added that ‘[t]he most proactive police are not necessarily seeking violence, but they are seeking action, and they think positively about using violence if it comes to that’ (collins : ). this is surely not true for all officers i met in the fieldwork observed; yet, it describes quite well some of those willing to be part of the emergency squad. the aftermath of the emergency squad’s credible threat we return now to a situation escalated to a point in which the squad had performed a credible threat. at that stage, any action from either side could produce unintended consequence. any further threat or any defensive reaction performed by a person on one side could be interpreted from the person on the other side as a provocation. as the previous chapter shows, the threatening phase, in particular the credible threat phase, would usually last shortly; such an unstable situation would quickly evolve either to a sudden de-escalation, or to a point of no return: officers doing coercion bodily. the reputation of credibility is crucially and publicly at stake when performing a new threat on the wing. interventions are usually discussed and commented upon, both among prisoners and among officers. more importantly, for this chapter, the reputation is mainly linked to the enforcement of coercive violent practices rather than to the use of violent symbolic language and behaviour. collins writes: [t]he most violent police receive good administrative reports; they are well-liked by other cops. this is not only because they are often high-energy extroverts (although that appears to be true too); they are the informal leaders of the police. this fits a basic principle of small-group research: the popular members of the group are those who most closely express its values and are best at what the group is attempting to do ( : ). he then adds: 'like being a good soldier, being a good cop is tested in combat-like confrontation' (collins : ). collins quote is quite consistent with the research experience. moreover, officers expressed an 'us versus them' opinion distancing their courage from prisoners’ cowardliness. in different occasions, in fact, officers say times and again, speaking about prisoners, that ‘each prisoner is a lion behind the bars, to become a sheep afterwards, when the cell's door is open’. following popitz ( ), anyone involved in a conflictual relationship would be more likely to threat violence when actual violence is not yet at stake, than when it is credibly or actually in the picture. the reputation of being credible when threatening the use of coercion is not something gained once and forever by neither any particular officer nor by any particular inmate. in order to maintain and possibly reinforce one's own reputation on the wing officers and prisoners need to manage accurately any face-to-face interaction accordingly (goffman ); any new threat or any new fight on either side would be taken seriously by the other; any such kind of interaction might lead to the display and enforcement of one’s actual capacity and strength to head on the dispute violently in a bodily fight with the opponent. the paradox emerging from the observation of the cycle seems to be that enacting actual violence appears to be necessary to make future threats credible avoiding future violence; 'doing' and displaying coercion would be, in other words, a mean to potentially avoiding new coercion simply by credibly threatening it. on one side, the officers' reputation is at risk whenever a prisoner threatening him is not punished accordingly after refusing to obey the officers' order. the officer might be ridiculed by the prisoner who would challenge his courage and thuggishness (and we may read it also as a masculine test). on the other, any particular prisoner cannot be too cooperative either; by doing so he would possibly risk his face in front of his fellow inmates becoming a 'rat' (johnson : ), thereby putting his previous reputation at risk; eventually risking possible violent retaliations . these unintended consequences might help explain why credible threats are not overused on either sides: credible threats are simply too costly because they might imply performing actual violence (see also popitz ); however it must be stressed that in the custodial complex (contra kaminski : ) 'hyperrationality' was hardly ever in the picture in the observed interactions occurring inside the wall. normative, value-driven and traditional thinking were also very common on both sides of the gate; reggio emilia could not be easily interpreted simply drawing from game theory. turning a blind eye to 'rule' the wing, thereby avoiding doing coercion in the beginning of the ethnography it was really surprising how rarely the officer on the wing would react to any ‘problematic situation' by calling for a squad intervention [thereby constructing it as a ‘critical event’], and how often, instead, he would apparently not notice any problems or 'turn a blind eye' to them. that ‘blind’ way of doing was not only a consequence of the ethnographer's presence on the wing which might have suggested the officer to avoid to enforce violence; yet in the beginning it was evident, and one officer even told me bluntly that they would try to avoid performing any squad intervention in front of any outsider. turning a blind eye was a common strategy used by officers to rule the wing. this point is not new at all in prison literature almost from its outset, nor is it in the sociology of work and organization literatures more generally; yet, this point has ‘rats’ were […] prisoners who were at odds with their fellow inmates, usually because of a willingness to give information to prison officials in return for personal advantage' (johnson : ). kaminski ( ) stated that in the polish context he studies squealing and reporting to officers can lead to 'severe beating, rape, or even a death sentence [by fellow prisoners]' ( ). rarely been discussed concerning the officers' decisions of whether or not to use force 'doing' coercion in any particular occasions. this ethnography shows that turning a blind eye was a common strategy adopted in different degrees by officers ruling the landing also in really critical situations that might be dangerous for the prisoners’ safety and wellbeing. one officer put it in the following way. here we only take into account really serious critical events. we do not pay too much attention on anyone lightly cutting himself, just to seek attention. that's just normal and happens regularly here, so we do not bother too much about it. nor do we bother if they fight with each other. they do it continuously anyway. we only need to rush if we see blood running on the pavements (with a sarcastic smile) or when life is really at risk... if we took all critical events happening here seriously... we would also go crazy, wouldn't we? (field note). another officer said that: situations are only critical for us when we actually see with our eyes that they are critical indeed; we do not normally consider a situation critical any time they [the inmates] start fighting with each other or start screaming and yelling towards us calling for our attention'; that's just our routine, in here (field note). yet another argued that they would only respond to really urgent needs and that someone shouting to save his life uses a tone, which is easily recognizable. despite the discretion implied in most officers' decisions largely recognized in the literature from the outset of prison sociology (sykes ), a credible threat normally would be a point of no return pushing the situation to a new phase. it would be a move binding the perpetrator and the victim of the threat together (popitz ); they would both (or all) be obliged to seriously take into account the other's next move before strategically deciding one's own accordingly. doing coercion bodily during an intervention (except during mechanical or manual restraint) would last shortly, just like most other violence do (see also collins ). most prison regimes, yet to different degree, are characterised by both a very unusual level of prisoners-officers proximity and unbalanced domination. in fact this are among the typical characteristic of the social world of the prisoner (goffman a). officers' decisions, at the end, are hardly ever negotiable. prisoners sooner or later must follow the rules enforced by the custodial staff. they will be urged to do it or forced to do it in a way or another. as last resort, officers would use force bodily. however, soft-power (crewe ) and soft 'means of influence' would, soon after the end of the intervention, usually replace bodily coercion re-entering the picture again. after any critical event, a new temporary fragile status quo (some call it order but that word has such a functionalistic taste i resist using it) would be re-constituted once again, to be sooner or later re-challenged once more. officers using force bodily usually, coercion would only be used after following more or less precisely the ‘cycle of doing coercion’; in particular it would normally be introduced by a stage in which coercion is threatened rather than performed like chapter shows; however, as it has been observed more than once by the ethnographer, an officer’s assault would directly lead to officers using force bodily, rather than less hard intervention independently from the ways in which the prisoner would behave after the assault . this section, not only will discuss what the ethnographer has observed on the wing, but will also disclose few anecdotes from officer's video-recorded interviews in which they provide their descriptions and interpretations of doing coercion bodily. separated or not by a barred door: intervening bodily in different contexts when a critical event 'occurs', two different types of officers-prisoners physical relationships with one another might be at stake, eventually influencing both the start and the dynamics of the intervention. firstly, the prisoners, on one side, and the officer(s) and the emergency squad, on the other, could be physically separated from one another i.e. by a barred door, a glass or a wall: in these situations neither violence between the keeper and the kept, nor the use-of-force (or 'doing' coercion) by the kept on the keeper are yet in the picture; the most common situations like these would be prisoners locked in their own cell alone or with another inmate, or inside a recreation yard with fellow inmates without any staff physically present within the same confined space. according to the ethnographic observation, each time officers and prisoners were physically separated from one another, the cycle would be more likely to develop slowly, yet in different ways, its sequential stages one after the other: pre-intervention, intervention and post-intervention (image . ). in particular, it would be unlikely that the emergency squad would directly start the intervention doing hard- coercion bodily without first starting to do it symbolically (infra, chapter ). any particular intervention would then vary depending on which particular officer or particular prisoner were in the picture and their personal positions in the vectors of inequality (race, religion, class, language, physical and mental health, being part of an organised crime group, and so on). secondly, the officer (s) or the emergency squad, on one side, and the prisoner(s), on the other, could be sharing the same physical space without any physical barrier between them. in the particular facility under study this situation would usually occur when the prisoners were escorted to go anywhere from their cell passing through the corridors or through the stairs, or when prisoners were moving freely at the recreation wing, or in any of the wings characterised by an open wing regime. doing coercion bodily with prisoners moving freely when prisoners and officers shared the same environment without any physical barrier between each other, intervention would be likely to escalate more quickly and easily than in the opposite situation to an actual bodily confrontation. critical events occurring within spaces in which officers and prisoners would be co-present in one particular space would much less likely include self-harm and the destruction of furniture or other goods. those kind of events had never been observed by the researcher, nor have they been heard during ethnographic interviews; prisoner-prisoner violence was instead occurring regularly more or less heavily not only on the yard where, often, quite heavy episodes occurred, but also on the stairway and in the wing with an open cell regime. winter . charlie (not his real name) and eight of his fellow prisoners are at the yard; it's very cold and wet outside and they do not seem to enjoy exercising that much. i am with mariano (not his real name), the officer on duty there: we are talking with each other while we are both observing the prisoners through the bullet-proof glass separating the officer's observation 'box' to the prisoners' exercise yard. being an ethnographer in prison one cannot be neutral about the foucaudian issue of observation and surveillance (foucault , a, b). at that particular moment, i am there observing inmates for my reason; the officer was also there observing them for his own goal: doing so it is his duty. this kind of similarity between the researcher’s job and the officer’s job, makes ‘doing’ observation in prison particularly problematic indeed (infra, chapter ). anyway, prisoners are now walking in circles; some of them clock-wise, others in the opposite direction moving in the empty and hostile grey-concrete yard in which even a ball for playing football is forbidden. there, prisoners play with few empty plastic bottles instead; something that they, or others before them, had previously thrown out from a cells' window before being escorted there. two prisoners in the yard are calling for attention by waving their hands back and forth repeatedly. they are clearly trying to communicate with the officer signalling him they all intend to go back to the wing now. the officer asks all other prisoners to confirm their free intention to go back to their rooms much before recreation time is finished. one by one they all confirm it by nodding. therefore the officer and i move to the blue-high barred- gate at the yard. the officer asks once again if all prisoners voluntarily agreed indeed [were not forced by a fellow prisoner] to 'go inside' and opens the door consequently. all enter the corridor and wait in a row to be escorted to the wing upstairs. there is – once again – only one officer escorting the group and, as usual, i remain at the rear of the group holding my tripod in my hand, this time with my photographic camera in my black-woollen jacket's pocket. the situation seems normal; i just had a very interesting and nice conversation for about an hour with the officer; he seems really relaxed to me. prisoners, looked bored and almost sleepy though. the officer is escorting the group through the corridor; then, he turns left to the stairs, walks upstairs for two floors and stops in front of the closed barred door blocking the entrance to the wing from the stairway. the officer looks through the glass to ask his colleague to open the door without receiving any answer; in the meanwhile he pulls out his keys from his right trousers' pocket turning his back to the prisoners and to me. he puts the key into the locker and looks backwards. suddenly and unpredictably, one young tall prisoner punches the officer's face. i am totally astonished; it's the first time i see this with my own eyes; i have always been told about it, but had never experienced it face-to-face yet. it is shocking indeed to me! i am trembling but trying to keep calm and reach one sidewall. i try to be in a position in which i observe the scene from aside; yet, a couple of prisoners move around me and i feel very worried. mariano had just told me in the interview that he is so proud of being a quite senior officer and had never been assaulted yet: well i witnessed his ‘first time’ just now. the officer is not that tall and quite heavy, not too talkative, nor cold either. yet, the punch – not such a strong one though – forces the officer mariano to step back not to lose his equilibrium. his nose is bleeding a lot. he says: 'matherfucker! you punched me! did you?' says the officer before trying to constraint the prisoner who looks very excited and somehow happy for his 'strike'. i cannot move towards the officer because i have got my tripod in my hand and i am always aware that it can easily become a weapon. therefore i step backwards, kind of traumatised and worried. the situation is totally out of control. the prisoner is smiling, the officer displays tension and his face turns red; he looks angry. there is no alarm to be rang, nor enough officers escorting the prisoners. only prisoners’ self-discipline and understanding avoid what could easily become something really serious and unmanageable neither for the officer, nor for me. the officer starts to scream ‘collega! ...collega! in less than two minutes one colleague arrives. before, passing right on my feet and pushing me aside one prisoner rushes from the end of the group to the officer only to shield the prisoner from the officer's reaction or vice versa. it is the first horrible experience, emotionally very daunting indeed. i think someone wants to beat me...but i am totally wrong. the prisoner who passes on me, in fact, simply wants to interrupt the confrontation from escalating. suddenly, another officer arrives: a real tough and muscular one: an almost-professional boxer. once on the scene he starts screaming. 'what the fuck have you done to my colleague? bastard! who the fuck do you think you are?’ the prisoner who hit the escorting officer, is hiding behind the fellow inmate who is protecting him from the officer who is trying to kick back the prisoner's legs with his boots. the officer arrives and firstly starts to open a dialogue, yet yelling, with the prisoner who had punched his fellow officer, eventually receiving a kick in his face in return. he can simply not imagine that someone like that young- blonde prisoner, a thin-little-young man could attack him the way he did. the officer is aware to be considered a well-known fighter and his reputation is not that of a very relaxed officer either. yet, he also receives a punch on his face just now. taking all into account, to be honest, i am deeply astonished as to how such two episodes are occurring one after the other...and the 'little' reaction that prompted (of course, the researcher effect has been in the picture). the second officer takes the prisoner in between him and the guy who assaulted them with his hands and pushes him to the side loudly screaming to the prisoner 'fuck off! fuck off!' the prisoner is now in front of the two officers who just give him some symbolic kicks with their boots, block him and take him forcefully to the wing and literally throw him into his cell. the psychiatrist says he is 'a bit de-compensated and needs some medication'. both the psychiatrist and the nurse try for half an hour to convince him to be injected with psychiatric medication but not only does he refuse it but he also goes completely berserk. eventually, they need to call the emergency squad. the squad arrives but probably he does not even see them or, being de-compensating into psychosis, he feels to be at risk of his own life and does not negotiate at all and barricades into his cell instead. the squad must open the door. they open the barred door and enter the cell, fight with him 'with no pity' to get him and block him. then, they take the person, constrain him tightly with their hands on the floor. only then, the female nurse is eventually able to inject the prisoner; eventually, the prisoner is then re-thrown into his cell. the intervention of the squad is finished (for the officers) just now. we are all moving downstairs to report what happened to the security manager who does not seem neither to appreciate my presence, nor to be happy to write a report. as a consequence of the assault one of the officers has a quite serious injury and must be taken to the hospital; the other only goes with him to be checked and receive one day off duty. the first officer assaulted has some serious permanent consequences and will not show up for a while. one image shot just after another similar episode had been crucial for the photo-elicitation interview's phase helping me to start unpacking what doing coercion is in from participants’ voices (infra, chapter )(vignette . ). having been on the scene time and again this overuse of force might be tentatively explained also in part by officers' fear of the situation and by the officers' necessity to stop the situation from escalating further. of course theoretically they should have acted differently, simply blocking the prisoner and nothing more than that. however, being there with them and experiencing their emotion and fear (at least i did) helped me greatly not to be too judgemental and try to comprehend the situation instead. to be honest, however, only one prisoner has ever intervened to help his fellow prisoner in the critical events observed. usually, prisoners not directly involved would stay quiet, or would simply intervene verbally, thereby trying at the same time to save their face with their own fellow prisoners and concurrently avoid further problems with officers afterwards. moreover, the bodily intervention would usually last only a few seconds or maximum a couple of minutes. by doing so the emergency squad's coercive violence would quickly overdue any resistance in a way or another. this would reinforce the officers' credibility of doing coercion effectively both to the prisoner(s) involved and to those prisoners nearby for the future. at the same time the hard intervention would also enhance the squad's macho reputation on the wing. yet, prisoners assaulting an officer would also enhance their own reputation at least with some of their fellow inmates, yet at the cost of officer’s future discrimination, retaliation, and even, yet rarely double jeopardy (sarzotti ; buffa a). using force bodily with prisoners locked in critical events occurring within a secured environment in which prisoners were physically separated from the officers could be of two different types. within a closed cell the ones frequently occurring were self-harm, a cell destruction, a prisoner barricading inside his cell, a violent interaction between fellow inmates sharing the same cell, or a prisoner violently threatening to harm a custodial or medical staff member outside the cell with a blade or by throwing objects. doing coercion was also regularly used as last resort to urge a prisoner to comply with the psychiatric compulsory treatment, just like the vignette above shows . this situation is similar to the t.s.o. (in italian: trattamento sanitario obbligatorio) compulsory sanitary treatment that can be enforced to all free persons by a law enforcement agency officer following a medical prescription occurring only after softer forms of negotiation. at the recreation yard, critical events would mainly happen involving two or more prisoners fighting violently with one-another for any possible reason: from a refused request of sharing a cigarette to a forcibly request or resistance to a 'sexual service'. no self-harm, barricading, or destructions (there was nothing to be destroyed) were observed at the recreation yard during fieldwork. of course this is not to say that they have never happened. usually, when any critical event had occurred inside a cell during fieldwork, the wing officer would firstly have tried to de-escalate the situation adopting soft 'means of influence' (infra, chapter ) for a sufficient period of time; yet, not always so kindly or softly. time and again, such soft means of influence as a chat between the prisoner and the officer, an officer's promise to seriously consider the prisoner's request of changing a cell, or to move the new 'difficult' room-mate to another cell, or even simply a cigarette or a few words exchange, had helped de- escalate the situation completely to a level manageable by the prison wing staff alone; without the need of the emergency squad. sometimes, however, the conflict did escalate and the squad did coercion bodily. eventually, the commander of the squad would order one officer to open the barred door and start fighting just like one of the vignette in chapter shows. hardly ever, officers are allowed to use the protection gears such as helms and shields (they have never been used in front of me). in order to use those hard- coercion tools a governor's order must be issued. usually, officers open the door simply wearing gloves. the same gloves that had previously been used to threaten the use of coercion credibly (infra, chapter ) are now used during action. just another lawful intervention, or a duel? some prisoners contested the very existence of the emergency squad as such. they argued that they, being prisoners, would not mind fighting, of course; according to some of them fighting inside seemed to be just a normal occurrence over there; something taken for granted by a large proportion of the participants in reggio emilia. this was also clearly visible to the observer; observation largely confirmed prisoners' narrations on this point. this is hardly surprising considering both the violent masculine code shared by both keeper and the kept in that particularly masculine culture, and the international literature dealing with prison masculinity and officers' abuses in a way or another (sim ; tombs and whyte ; drake ; earle , ); yet, almost all prisoners lamented that the keeper were not consistently playing the game fairly, like according to wacquant ( ), a boxer would do. in other words, some prisoners would argue that the situation would not be balanced during the interventions because of the strongly unequal distribution of power that would make the outcome of the situation easily predictable. that's a quite comprehensible point. however, the emergency squad interventions are neither a box match nor a duels; they are emergency interventions. many prisoners strongly criticised the modality of the intervention performed by the squad as such. sometimes they admitted that a particular intervention had been a reasonable and justifiable response to a particular prisoner's wrongdoing; yet, during informal talks and ethnographic interviews, nobody has ever accepted the idea of the squad as such. in particular they all contested that one prisoner could be overdue by an emergency squad largely outnumbering him. many prisoners simply thought such an unbalance power relationship to be unfair. often, prisoners claimed that a situation in which many fight as a team against one single person is unconditionally wrong and unjust, not masculine, too easy, and even, as one prisoner put it, ‘completely immoral’. notwithstanding the particular situation at stake, many prisoners argued that officers’ interventions should be performed differently: they should be a one-to-one affair. by saying so, those prisoners have unmasked a strongly masculine attitude towards a more balanced and at the same time strongly masculine approach that clearly referred to the duel (see also collins ) . prisoners would prefer a more balanced fight grounded on reciprocity (like in box matches). a fight displayed in the form of the medieval duel; a way of using violence typical of previous phases of the civilization (elias , ) in which the participants’ honour and reputation (and i would add credibility) would clearly be at stake. 'be a man! open the door...but just me and you...now! it's too easy doing it with your friends' help. let's see who will survive, now! open this fucking door! don't escape, come on! i'll destroy you definitively. hey, bastard come on, open this fucking door and let’s see what happens. you are afraid coward! [screaming] come back! open this fucking barred door bastard!](field note). by staging a duel, some prisoners would consider a one-to-one fight as the appropriate way to honestly test one's capacity to overcome each other on equal terms. yet, to be honest, not all prisoner-to-prisoner violence appeared to take the form of the 'fair' duel either, in reggio emilia. the 'duel', in other words, seemed to be discussed and proposed more as a normative and rhetorical device, than a really feasible conflictual configuration to be adopted in day-to-day violent interactions inside. this type of formal configuration was sometimes accepted by both parties; yet, only ritualistically. staging a duel was of course an informal, barely-lawful, procedure. only a few officers would openly approve and even less would actually perform such a duel; hardly ever in front of an outsider. duels do occur; maybe, more or less frequently depending on the particular context, but they do occur indeed. collins ( ) writes about ‘hero versus hero’ ( ) explicitilt referring to the greeks mythology: the iliad; he does so, to introduce his argument on the ‘audiense support and limit of violence’ ( ). in those occasions, after a prisoners’ one-to-one strong disagreement with an officer, some reciprocal verbal confrontations, one or the other might invoke the duel by signalling the intention to fight one-to-one; it is a kind of violent masculine test in which the respectability and toughness of each one is tested on physical terms on the ground. of course, due to the situation officers dominate the exchange and have the power, but also the accountability whether or not to open the barred door to start the duel. the officer cannot open the cell door at his own will lawfully. surely, he cannot do it to perform a duel. ex-post, however, with hardly any testimony it is not particularly difficult to justify what had occurred if the situation had run out of control. the officer would open the bared door with one foot blocking it strongly. by doing so, the officer would test the prisoner's immediate reaction (this is what officers always have to do when routinely opening the cell’s door) before opening the door completely and entering the cell. by doing so the officer tries to limit the actual possibility of an imminent confrontation, either symbolic or physical one to occur. as far as i grasped it by few observations and dozens of ethnographic interviews, accepting the duel and entering into the cell, the officer would show both 'respect' to the prisoner as far as he takes the prisoner’s threat seriously, and fearlessness to the inmate, thereby enhancing his reputation. starting a duel to start a duel an officer would open the barred door of the prisoner's cell. prisoners seemingly respected, and even appreciated, those officers who dared to open the cell alone in those situations and often treat them accordingly following ‘the script’; others did not. duels were tolerated and understood (if not agreed) by many prisoners and officers inside; those not agreeing with those practices would not challenge them openly; yet, accepting them, they might have felt abused, distressed, worried, traumatised and very vulnerable day in day out. it is noteworthy that those practices not only were usually unchallenged, but they were also clearly imbuing the culture and routine of doing coercion inside, as well as the reputation of those who have been involved in such interactions. nobody had ever denounced any wrongdoers (but was the wrongdoer considered to be a wrongdoer?) for a reason or another during my fieldwork. possibly because some officers and some prisoners shared a common code of violence and masculinity that would put a layer of respectability, or rhetorical respectability on the duel as a means to solve disputes adequately and in a balanced way. possibly, then, the opinions of those not sharing those ideas were considered to be less relevant; and their voice would remain unheard anyway. an officer opening the barred door alone and with bare hands (no shield, no baton was usually in the picture) in response to one inmate's threat would in fact demonstrate to the prisoner and to the other inmates on the wing the officer’s respectability and toughness; it would demonstrate as one prisoner put it that 'he’s a man and not just a turnkey'. a ritualistic duel between one officer and one inmate: performing deference and demeanour however, a less naive interpretation of the 'duel' would show that, only a ritualistic and rhetorical duel was actually at stake; not a real one with an unpredictable outcome. it looked more like the spectacle of wrestling than to a box match on the ring. a ritualistic duel in which, instead, neither the script, nor the outcome of the 'duel' is at stake; in the ritualistic duel, in fact, both parties strictly follow the script or the duel turns into a real fight possibly followed by the emergency squad intervention. such a ritualistic duel can be read at the light of the classical goffman lesson ( ) as a particular case in which the entire ritual chain is constructed as a reciprocal and interactive performance of deference and demeanour. a chain characterised by a particular dramaturgy, a particular set of local rules, and possible honourable exit strategies by which the face of either party is saved and physical violence is avoided as much as possible (collins ). de facto, the officers dominate the duel from the beginning to the end. the prisoner must only play his role docilely and rhetorically, or the situation would change completely. in fact, in duels following the script, the officer would only be allowed to actively play that game theatrically (yet, in a way deeply imbued in symbolic violence) yelling very loudly, and occasionally even threatening or actually slapping the prisoner on his face. by doing so reinforcing the process of infantilization at the core of the process of prisonization. the prisoner, on the contrary would be simply expected to accept the interaction docilely. in order to perform his role in the duel following the script, the prisoner should accept the definition of the situation (as well as slaps included) performed by the officer as a passive victim without physically reciprocating any of the officer’s symbolic or actual offence, psychological or physical violence whatsoever: neither symbolically, nor bodily. the prisoner would either display his resistance passively, thereby accepting to continue to be abused physically or symbolically by the officer, or would admit his own 'wrongdoing', or simply to have lost, and apologize for it accordingly in order to stop the 'duel'. other prisoners' reactions are not at stake in those ritual duels' scripts. the officer must win the game and this is well known by both parties. usually, both the keeper and the kept would stick to the script straightforwardly. a ritualistic duel is, of course, a very risky situation for the officer too, because the prisoner might actually assault him at any time (or defend himself, depending from one’s own perspective of this issue) either with or without weapons, such as razor blades, that in that custodial setting were frequently available to many prisoners. those kind of duels had rarely occurred in front of me on the landing, though; moreover, to the best of my knowledge, they would mainly be performed by some particularly masculine and tough officers 'duelling' with masculine prisoners, whom the officer would publicly display to dominate easily following the script enhancing, by doing so, his own reputation. a prisoner exiting the duel's script if the prisoner exited from the script reacting to the officer’s verbal or physical actions, than the officer would start punching him immediately, as one officer bluntly told me, and other colleagues, or the emergency squad, would arrive straightforwardly escalating the duel to a dog-eat-dog combat; this would also be common knowledge, shared by the officer and the prisoners alike, even though hardly ever academically in focus. the escalation of the fight would then probably be reported as a critical event in the appropriate official registers and documents. duels are totally illegal and are not likely to be reported on paper: so they do not exist, officially. duels that turned out to be an abusive aggression must therefore be described accordingly creating an ad hoc explanation of the event ex post; they will probably be described as a suddenly necessary response to an officer's assault even though the situation could, and should, be interpreted and described differently indeed. the previous night on the wing had been horrible: the officer and the nurse had no possibility to rest at all; many prisoners had been screaming and continuously asking for anything they could imagine to ask for. then, the night shift was finally over. the next morning, after a half-hour walk from my hotel i enter into a wing in which stress was heavily in the air. the new officer starting his shift does not seem to appreciate the stressful situation he found inside. both staff and prisoners seem to be particularly nervous and i am feeling uncomfortable there. one well-known 'difficult criminal’, i’ll call him arturo here, had been particularly difficult in the previous hours. that was nothing new, though. he had been creating problems ever since his arrival about three weeks beforehand. i witnessed his first arrival on the wing. a bunch of officers first took him to his cell that evening. his screaming and unreasonable bodily behaviour looked like he was berserk; yet, one week afterwards, the psychiatric explained me that, in his opinion at the light of his knowledge, he was not ‘crazy at all’. (what is a mental health problem or how a mental health assessment works is never at stake inside; it is all taken for granted here and would in fact deserve much more attention, both by academics and by staff). arturo was sent to that forensic hospital from another prison in which he was detained for a psychiatric assessment. his behaviour, there, was judged to be too unpredictable and too violent to stay there and they sent him to the forensic hospital for a psychiatric assessment. the psychiatrist tells me that arturo’s diagnosis is already ready and that psychiatry can hardly do anything for such a ‘criminal’ as he or she calls him: he is simply a 'bad guy'; moreover, he also informs me that formally he [the psychiatrist] is supposed to wait for a month since arturo’s arrival before writing a definitive forensic psychiatric diagnosis that would imply either sending him back to where he came from, or accepting him as a new patient of the asylum. anyway, according to the psychiatrist, arturo is just a criminal and not the mad and he pretends to be; they can, therefore, treat him accordingly. arturo continues to behave strangely on the wing, maybe hoping by doing so to change the psychiatrist’s mind about his own psychiatric assessment; yet, the psychiatrist has already taken his decision and does not display any intention to re- considering his case any further. he has thrown anything he can out of his cell towards nurses, officers, and me. he has also destroyed the cell time and again, and flooded his cell repeatedly as acts of displaying 'insanity'. eventually, he is in a completely bare cell (in italian, cella liscia) with a mattress on the floor, no television because there is not any left on the wing [prisoners have broken them all and new one are on their ways]. furthermore, he has no access to running water anymore now as the faucet is controlled externally by the officer to avoid new problems. the officer starting his shift comments to the nurse even the ‘cella liscia’ does not seem to work with that an…[imal; i suppose]. he does not refrain from behaving stupidly and violently. that officer is really annoyed and is no longer in the mood to accept to continue to accept to be stressed by the ‘stupid guy’ anymore. two hours after the officer has started his shift on the wing, a couple of heavy verbal exchanges had already happened between him and the prisoner. the officer, in fact, now refuses to go to the prisoner's cell each time the prisoner calls him 'for nor reason'. the prisoner insists and reminds the officer that listening to prisoner’s request is one of the officer’s duties. he was right, in a way, but, being honest, the prisoner was clearly calling provocatively to exacerbate the officer who was not in the mood to be comprehensive anymore even though i was there next to him (or maybe also because of my presence). the situation is slowly escalating; suddenly the officer walks toward arturo’s cell. arriving in front of the cell, the officer starts screaming to the inmate. 'are you stupid? i am trying to treat you like a normal guy. do you get it or not? if you are stupid, then i’ll treat you differently. stop calling me continuously, or your requests will not be taken into account anymore! ok? do you get it? is it now clear enough to you now? bye.' the officer turns his back to the prisoner and walks back to his position, where he continues filling in documents, reading weekly papers, and time to time watching some tv (which was abusively there like it usually happens inside despite all formal rules and regulations). arturo is not the only prisoner giving problems; others are banging the toilet doors of their cells, few are screaming. the situation is really unbearable. the officer walks back to his chair he had previously put in the corridor facing the cells to better control 'the guys' and, concurrently, showing his awareness and at the same time readiness for action. after one hour or so, the same prisoner throws some liquids on a female nurse passing by again. the officer, seeing the scene immediately runs toward the prisoner’s cell; the prisoner is only wearing slips which were only partly covering his penis; he was completely wet and stinking of urine. arturo threatens the officer urging him to open the door ‘if you are really a man’. the officer, probably because i am also there, first tries to calm the prisoner down. eventually, the officer opens arturo’s barred door and slaps him on his face more or less 'symbolically' a couple of times, yet also physically. arturo reacts by letting his own body fall down in the wet and filthy pavements of the cell to emphasise the officer’s violence. the officer says 'it’s enough for now. just sleep! and don’t call me! i won’t come anyway. arturo remains quiet for a few hours; then he starts creating problems again. i am afraid he will experience other duels (he would also risk a lesson by doing so repeatedly) before being sent back to the prison he is coming from. i think that nobody will miss him in reggio emilia when he will be gone: neither his fellow prisoners, nor the officers. to be honest, though, yet being sensible for his victimization, neither will i. (vignette . ). these kinds of duels have only occasionally happened in front of the researcher. although, other alleged unlawful behaviours had also occurred in the facility under study time and again. one alleged case of double jeopardy is still under investigation and had produced wide local media coverage. alleged double jeopardy without fatal consequences in prison does not apparently deserve national media coverage in italy, though. in the reggio emilia's case, an alleged group of more than ten officers has been accused to be the perpetrators of a 'strong lesson' given to two prisoners that had previously assaulted a prison officer on the landing. that particular episode occurred just before this ethnography started and of course influenced its development significantly, particularly so in the beginning when trust in the ethnographer was not in the picture at all yet. double jeopardy is nothing new in italian prisons; nor abroad. not only, have some episodes been prosecuted, but also some verdicts have clearly shown some officers' criminal behaviours and responsibilities (buffa a; sarzotti ). those kinds of jeopardy are not usual, nor are they considered normal inside by many officers (at least in my understanding). that kind of jeopardy has never occurred in front of the ethnographer; yet officers and prisoners claim it has been recorded and will be fully addressed in another forthcoming publication focussed on ‘telling’ about coercion. usually, however, doing coercion bodily would not occur in the same way under all circumstance and with all prisoners: also at this stage discretion and discrimination are strongly at stake; possibly even more. to affirm this soundly, however, much further investigation is required. chapter the natural history of the research and some methodological notes ‘access to prison wings is harder to obtain than entry into public spaces such as the chapel or the library…there are also limits to which prisoners can be interviewed , when prisoners can be seen, and when, if at all, researcher can use recording equipment. no prison official permitted me to carry a digital recorder’ (kaufman : ). about the preliminary stage of the research the first informal contacts with those in charge of granting clearance to enter the custodial institution for research started in , more than one year before my enrolment in the phd school. despite my experience in previous projects in other custodial institution either in italy or abroad (the netherlands, scotland, finland, poland and so on; see visser and vroge ) it took quite some time negotiating access for this research. one of the reasons was that the forensic psychiatric hospital was already a problem as such to be managed. further research could only contribute creating new problems. after less than a year in total, the documents were ready and i was formally allowed access yet i still needed to contact the director of the institution to organize my first visit and discuss the project and its feasibility. that proved to be quite challenging; eventually, the director who did not seem to be pleased to meet me, suggested me to get in contact with the medical director who would ‘take care of me’ on his behave. she did it, indeed. in less than three months i was invited for an informal meeting with the medical director who then, organised my first access to the wing. in less than four-hour car-ride i arrived at the facility one morning in july. few basic facts of this fieldwork i agree with clifford when he challenges a positivist approach to ethnography. however, i follow him, not only when he famously stated ‘ethnography is a hybrid textual activity: it traverses genres and disciplines’ ( : ), but also, more importantly, and less often quoted, when he put it clearly that ethnography is not only, nor primarily literature ( : ). the ethnography i present here is definitely not only literature. it is the textual result of a lot of interactions, co-presence, observation, dialogues, banters, cry and so on, that have lasted for something less than two years. this research was a strongly bodily experiences to me, as well as a heavily psychological one. finishing it, left me filled in with memories of physical pain, psychological distress, and anxiety, that i experienced in-there. yet, as crewe put it, eventually i exited the field and officers and prisoners continued to live their life there. i often continue to receive news from the participants, via whatsup, face book, sms and phone calls. doing ethnography in only one wing has been nothing like watching an exciting prison film, or doing my previous documentary projects describing the different aspects of particular custodial facilities i wanted to narrate ‘navigating’ through those facilities moving from one place to the other. of course, the result is a complex text; it is the translation of my experience of doing ethnography in that particular field. yet, my experience was deeply grounded in a particular time and geography. some ‘facts’ are noteworthy, though: ) the field work is the istituti penitenziari di reggio emilia. the facility block house gate has always been ‘open’ to me for almost three years during which, in no occasion (at any time), i was refused access. ) i worked within the wall for no less than hours, covering all shifts, usually for at least hour a day: about % of the time in one wing, % on the yards, the rest just hanging around. during the entire ethnography, i would work holding a small paper notebook and pen visibly in my hands; later on, i would also sometimes work with a small digital camera that i would also use to record short videos and interviews. ) each single time i returned to my hotel room from the prison, i have always spent at least two to four hours, re-writing the notes, or commenting them on my lap-top. more than a dozen of time i have spent my free time going out with prison officers; once i went to see a theatre piece in which few the inmates from ‘my wing’ were acting; i went to a prison officer birthday party and to a farewell party of a nurse who quit working. i refused some invitation to maintain some distance and to take time for writing. ) i saw hundreds of interactions in which either prisoners would challenge officers, or officers would threat or use force against prisoners. i saw prisoners assaulting officers in front of me, and so on. ) the ‘unit of analysis’ is the observable interaction. each interaction is analysed at the light of the previous chains of interactions in which the actors at stake have been involved. ) i heard screaming, yelling, insulting all the time. i saw sexism, machismo, racism, islamophobia (but, to be honest, not to such a different degree than in many other italian social contexts, such as factories or schools) i had previously visited. i smelled the worst smell that i could ever have imagined. i saw persons cutting their belly with a razor blade and, afterwards, i saw the doctor and nurse curing them, sometimes while laughing to one another (as usually occurs in operation rooms in hospitals. i witness an amazing amount of violence or bodily confrontation. i saw people acting out, banging their heads towards the barred door and bleeding accordingly. i saw people screaming, asking to be tight to a bed feeling unable to refrain from hurting themselves to death or killing other; in those ways, at least, they had justified those requests approximately to the doctors in front of me. ) i conducted more than semi-structured video recorded interviews, and almost fifty photo-elicitation interviews mainly with prison officers, but also with medical staff and seven inmates. ) i started writing from the very outset of the ethnography. this text has been continuously changing during the entire ethnography and i still consider it as a work in progress to a certain extend. i witnessed all that with my body and my mind. i therefore dare saying that this thesis is absolutely not only literature, thereby agreeing with clifford at least partially. ) even , the vignettes, the most ‘literary’ part of the ethnography only contain what i lived as facts; yet, some parts are combine in creative ways to try giving the intended emotion and to secure anonymity to my participants. without all the time i lived there those vignettes could not simply exist. researching on the use-of-force appreciatively or critically: a third way? reading the literature that deals with the use-of-force and violence (both within the wall and beyond) one thing emerged clearly: in recent years the debate over the prison has been strongly polarised (and politicised); this is not surprising taking into account the settings in which this research is conducted, the political, electoral and public relevance of the issue and, finally, the problem of access and financing bodies (power ; sim ) . here, it suffice noting that the international study of prison officers have been traditionally conducted mainly from two opposite standpoints: the first is appreciative towards prison officers, it downplays the role of coercion, and is often co-founded by the prison service; the second instead tends to be very critical about them focussing on the illegal use-of-force and abuses (berrington et al. ; power ; sim ). the prison officer (liebling and price ) is another crucial text on prison officers – like kauffman's one ( ) – dealing in particular with the context of england and wales. in that book, alison liebling and colleagues explicitly adopted a method and approach grounded on appreciative inquiry (liebling at least two articles in prison sociology have directly focused on the issue raised by becker on 'what side are we on?' (liebling ; sim ). and price ) they argued that: '[u]nlike traditional social science research, which tends to focus on problems and difficulties, [appreciative inquiry] tries to allow good practice to emerge' ( ); then they continue that it 'aims to understand what makes best practice possible' ( : ; emphasis added). towards the end of the conclusion of their book (that has its root in a research commissioned by hm prison service ) they wrote: [w]hat can we conclude about the role of the prison officers in the late modern prison [in england and wales]? […] prison officers are the human face of the prison service. as human being, they are both special and fallible. the power they hold has the potential to corrupt, and the world they work in can be dangerous, difficult and always a challenge. prison officers are perfectly able to challenge and help prisoners with their offending behaviour [...] there are myth and passions about who prison officers are. this book constitutes a first general attempt to consider the evidence (liebling and price , ). in the prison officer book, a lot of evidence were indeed considered from an impressive number of research the authors conducted throughout their outstanding career and it remains an invaluable source for anybody who intends to work on the topic; yet, it does not say enough on a crucial and particular aspect that characterised prison officers’ job: the duty of the threat and the use-of-force; then, of course, it is a piece of work that refers to the geographic context of england and wales, as well as my research refers to italy; lastly, it was not the first book on prison officers, it was only the first one in uk. in its third edition, some more critical issues has been sharply addressed; see also the official report: an exploration of staff – prisoner relationships at hmp whitemoor: years on (liebling et al. ). (https://www.gov.uk/government/publications/an-exploration-of-staff-prisoner-relationships- at-hmp-whitemoor- -years-on) ( - - ). on the other side of the divide between appreciative and critical scholars that has characterised this field of research, along with associations and political campaigners we can find many critical scholars studying or denouncing the 'use-of-force issue' straightforwardly focusing on officers' culture and practice and 'bad' violence . recently joe sim ( ) who has been teaching for the last thirty years at liverpool more university published a chapter in understanding prison staff (bennett et al. ) titled 'an inconvenient criminological truth' in which he address it straightforwardly. he argues about the ‘prison officer’s issue’, that it is crucial to address [t]he question of prison officer culture and its negative impact on prisoners and those staff who show humane empathy towards them. the detrimental and mortifying dimensions underpinning this culture still remains relatively marginal in prison literature. instead a theoretically sanitised penology has developed in which this culture, occasionally disrupted by the shame-inducing behaviour of an atavistic 'bad apple’, is regarded as functionally benevolent for offenders (sim : ; emphasis added). sim then continues: '[t]his chapter takes a different position to this sanitised penology. it seek to provide a critical [thus, the opposite of appreciative] analysis of prison officers '( ) taking distance from the consensus around prison officers expressed by liberal prison reform groups and academics. three main points for thinking critically about prison officers are particularly significant for his argument: firstly, the recognition of the existence of institutional violence, or as he defines it 'the institutionalised nature of prison officer violence' (sim : ); in italy this is not a new thesis (ricci and salierno ; gonnella , a, b; manconi et al. ). secondly, the role of prison officers' masculinity (sim ; toch ; ricciardelli et al. a large group of scholars that studies also these kinds of issues can be found at: http://www.europeangroup.org/ ; earle ). lastly, the relationship between the state and prison officers. the justification of the field this research, as it ended up to be, cannot be soundly defined as a comparative research, nor was ever intended to be one; yet, the setting was selected because in one particular custodial setting two identical facilities could be found one next to the other within the custodial complex’s wall hosting two particular custodial institutions, each one characterised by one particular institutional goal: a prison and a forensic psychiatric hospital; and this seemed to be adequate to explore power relations between staff in those two institutions. generally speaking, in fact, i would agree with the assumption that studying only one case is problematic, or at least more problematic than studying more than one (yet, this is notoriously not true in different ethnographic traditions). that’s why this research started as a quasi-comparative research. the reason why, then, it has mainly focused on one setting, the forensic hospital, depended on the development of the research natural history and its focus on the possibility to study ethnographically by observation, and even adopting visual methods, the squad interventions on the wing during critical events. in other words, focussing only on one facility was a decision taken to better address the emerging research question on the use-of-force: it was not scheduled beforehand, but simply became the more adequate way to conduct the research in an attempt to pursue its goals. normally, the single case study joe sim particularly emphasised the role of the state in the issue of punishment; a very different approach that tend to de-emphasise the role of the state and reason about border is growing among so called border criminologists (https://www.law.ox.ac.uk/research-subject- groups/centre-criminology/centreborder-criminologies); (see kaufman ). i here thank franco prina who stressed this point while discussing with me this work at the initial stage of it. can be justified with two main reasons: the setting is very exceptional, or it is somehow representative of other similar settings. my justification to focus mainly on only one setting is twofold. firstly, a lot of time was needed to gain trust in order to be allowed to have actual and not only formal access to the wing day-to-day life and even more to be allowed to participate to the emergency squad’s interventions. trust, as sketched above, was the result of the ongoing interactions with those particular officers working on one particular wing day in day out. deciding to leave the asylum field to start a new one in the prison would have been simply unfeasible given the time-schedule at stake. unintended consequences and time schedules gave me no chances to even trying it. more importantly, i had then the impression that my observation was not yet 'saturated' and that, concurrently, the field was becoming more and more familiar and open to me. in other words i was not yet quite satisfied with my understanding of the topic; however, i had the feeling that i might have some chance pursuing it. in particular, i felt the need to see even more critical episodes to give a sense of them and to elicit ethnographically new interpretations from participants to better grasp the subject understanding of it. interactions with prison officers, other staff and inmates were becoming ‘normal’ occurrence in my day-to-day stay on the wing: deep, spontaneous and more reflexive conversation were emerging spontaneously or intentionally elicited by me. the second justification to stick to only one setting was the physical contiguity of this institution. due to that same contiguity, many prison officers working in the special hospital from time to time were allocated to the prison. almost all but the youngster officers had at least some experience of at least two other prisons in italy. of course i am aware of the very different cognitive dimension implied in observation and ethnographic interviews (gobo ). interview can in fact be considered as an ‘actively constructed narratives’ (silverman : ; see also riessman ). but i do think that the opinion, discourses and justifications that can be grasped through observation are at least as interesting as the behaviours and course of action that we can actually see. and showing a slightly different opinion than silverman, i do think that the two distinct dimensions can be related one another through theory and practical understanding. i do agree with silverman that interviews [with non- participants] do not give access to ‘experience’ (silverman, personal communication). due to my interest in the practice of the use-of-force, i decided to focus in this thesis mainly on the observational data (see also jacobs ). of course, those data have been influenced and made readable to me also by the bulk of interviews i collected and video recorded inside and outside with officer, medical staff and prisoners during the last months of the ethnography. i considered the long participation in one wing and the interviews an adequate way of experiencing and participating in actual violence in one specific organization. without participation and personal reciprocal trust (only by doing interviews) this results would simply not be there, at least not in this form. doing ethnography and being there on the field allowed to me to grasp a set of different interpretations and discourses on the use-of-force occurring inside, in the special hospital, the nearby prison as well as in other facility the participants had experienced throughout their career. in the next section, i turn to my position in the field. the ethnographer’s position in the field: insider/outsider, or what else? despite the risk of being unfashionable, i do follow the max weber's lesson; in other words, by doing so i try pursuing a quasi-value-free social research. i try to take into account the researcher’s reflexivity, and express my position and opinion as clearly and explicitly as i am able to. yet trying, at the same time, to unpack analytically the complexities of the field without, by doing so, pursuing any political goal. some words on the researcher’s attitude and the research process from a critical realist ethnographer a researcher, let alone a prison researcher, can never fully become an ‘insider’ or, adopting an anthropological heading can even hardly ever try to become a native. what is crucial, though, is what is commonly known as reflexivity (hammersley and atkinson ; cardano ). in qualitative methods, reflexivity is a crucial concept, yet sometimes a bit too fuzzy to be adopted clearly in the field. here, hammersley ( ) version of reflexivity in prison ethnography will be used. [reflexivity is the] awareness on the part of the ethnographer of how her or his personal and social characteristics, feelings or emotions, and behaviour may not only facilitate and illuminate but also restrict and distort the data and the analysis…[t]he ethnographer can never simply be an insider ( ). hammersley brilliantly points out some crucial problems of doing ethnography, either epistemological or ethical ones, which have been at the centre of the ethnographic agenda for decades, particularly so after the so- called writing culture debate. hammersley’s critique of empiricism is relevant here; the way in which he directly challenges the heuristic value of ‘inside’ knowledge is noteworthy because it can challenge the very base of this thesis. participation, in other words is more likely than not to enhance certain kinds of understanding; however, it cannot ‘guarantee’ it (hammersley ). as a consequence, the author concludes by saying that, neither ethnography, nor any other methodological approach can claim any epistemic privilege. there has been an interesting methodological and epistemological debate among ethnographers between, at one extreme of the continuum, those who have opted for the naturalist model and, on the other side, those who have opted for the constructionist model (silverman / ) ; however, neither side can guarantee a ‘better’ knowledge than the other; each approach can instead produce and justify one plausible comprehension of the phenomenon under study from a particular standpoint adopting a particular method. i agree that not only ‘research can ever be “theory free”’ (silverman / : ), but also, i would add, following cardano ( ), that ethnography 'is [necessarily] “praxis” or “procedure laden”' (cardano : ); this point was particularly relevant in this field. the implicit or explicit epistemological position of the researcher frames her or his own research strategy and practice accordingly and vice versa. in other words, i agree with hammersley ( ) when he writes, in ethnography, as in any kind of research, we are never simply documenting what goes on ‘inside’, providing a picture or comprehensive account of it, we are always seeking to answer some particular set of question about it ( ). the methods and fields of inquiries adopted by ethnographers varies grately between those extreem; a non-comprehensive list of ‘methods of collecting and analyzing empirical materials’ (denzin and lincoln ) includes: narrative inquiries, critical art-based inquiries, oral history, observations on observations (on this interesting point see also the methodological notes in the multicultural prison [phillips ]), visual ethnography, performative autoethnography (jewkes ), and convict autoethnography (newbold et.al ), collaborative ethnography (bosworth et al. ) and so on. even more importantly, ‘the question we address never exhaust the phenomena we are studying’ ( ). the corollary is that, of course, another question, or the same question in another research context (or by a different researcher) would possibly result in a different comprehension of the ‘same’ phenomena. one interesting point not directly addressed by hammersley in this text on prison ethnography is that newer interpretations can reinforce or contradict the previous ones already available of the phenomenon under study; however, it is crucial to point out that new ethnographic knowledge can hardly ever falsify older previous available knowledge. falsification of hypothesis in not the normal way in which ethnography knowledge works. quantitative methods, on the contrary, particularly so in the domain of the hard sciences, usually do refer to falsification as a crucial strategy of truth claiming within their particular epistemology and methodology. the crucial issue of value free research is at stake here, as well as the relationships between ideology, culture, and knowledge, a longstanding epistemological conundrum that cannot be addressed here, due its relevance and complexity. what is possible to do, instead, is simply and shortly to address the question of the participants’ and ethnographers’ knowledge and position. i do not recognize a privileged heuristic and epistemological position to neither researchers, nor participants. prison researchers coming from the outside import their own idea, ideology, research practices, prejudices, and knowledge (i.e. drawing heavily on the theory and ‘the’ relevant literature from their own field); the ‘participant’, on the other side might also have their own personal opinions, prejudices, questions to pose, and why not, lay or sophisticate theory (one of my participant served as university teacher before his arrest). however, even those questions by human being locked-up or wearing a uniform are not disconnected from the ‘outside’, nor are they necessarily less likely to be biases than the researchers’ ones. despite the wall separating inside and outside we always have to consider the interconnections and the relationships which link a particular prison with the social-political-geographical context in which it is located; this point was already grasped by sykes almost sixty years ago ( ); it is important, moreover, to take into account, concurrently, both the importation model (in which irwin and cressey ( ) underlined the importance of prisoners’ (and officers’) identity prior to incarceration to the ‘inmate culture’) as well as the prisonization model –the socialization to prison values introduced by clemmer ( ) and sykes ( ]) – to try to grasp the complexity of the situations at stake. the researcher’s standpoint referring specifically to the micro-sociological ethnography at stake focussing on officers ‘doing’ coercion, i intend firstly to explicitly disclose my standpoint. my epistemology, here, already introduced above, draws from critical realism; my political attitude toward the participants was neither politically adverse to the police and prison officers, nor particularly sympathetic to inmates (in fact these two categories are very broad and include very different set of people sharing a multitude of social positions, cultures, belonging and so on. endorsing critical realism, i am aware to become an easy target for both realists and constructivists; yet, i am not a partisan of critical realism neither and i am acquainted with (and have been tempted by the sirens of) the deconstruction of post-structuralism, the brilliant insight of the different feminisms and the openness and opaqueness late-modernism; i have simply considered critical realism as the more adequate epistemology to adopt while doing observation on the use-of-force and violence in prison. prisons are places of physical confrontations, harm, sorrow and poverty (buffa a; wacquant , ) and that’s a fact that can hardly be dismissed by anybody who has been inside for a while. it is possible to focus on prisoners’ practices of ‘doing’ freedom (ugelvik ) only giving it a very limited, indeed too limited, interpretation of the word freedom. i took another position inside and i experienced on my own body that a hard, hurting and heavy reality, such as a violent fight, do exist, indeed. fights do occur bodily (of course the interpretation of those fights might vary greatly from one participant to another) whether or not a researcher is observing it. of course i am not saying that they are independent to the researcher’s presence. on the contrary, i do not intend to downplay the researcher’s effect which is well-known in the social science literature; i simply intend to challenge those philosophical late-modern interpretations of the prison and police context which tend to downplay the role of what actually occurs, to focus mainly on discourses and self-indulgent auto-ethnographies. avoiding to do so, adopting a more sophisticate and late-modern attitude philosophically questioning the idea of reality as such, would undermine the astonishing experiences of many people whose realities and recurrent violent interactions i have witnessed with my own body, my ears, my eyes and all the senses (simmel ) repeatedly. i do not intend to do that. the ethnographer and the activist a further question about my position would be: am i engaged? yes, definitely; i am engaged in what i study, in the process of studying, and in the interactions i am observing and in the protagonists of those interaction at least to a certain extent. i am somewhat also a witness; yet, i am definitely not a partisan; at least i do not intend to be one. i am a research rather than a witness. although the distinction between the two might be philosophically complicated, my duty is clear to me and it is to work to produce knowledge, although ‘knowledge’ is a very contested expression nowadays; and it is particularly problematic in prison for its well-known relationship with power that was also highlighted by foucault. being neither a partisan, nor an abolitionist, however, does not mean being neutral (which i think it is impossible to be). to me, it implies, however, trying to be as neutral as possible and as reflexive as possible concerning each and every decision making, strategy, interaction and behaviour adopted doing fieldwork and further analysis. this would require much more space that is available here. all my notes, schema, older draft, pictures, videos, uncut interviews are available to scrutiny to any person reading this thesis that might be interested. questions may arise from my personal academic interest, or directly from the participant. i am in the field to try to grasp some particular aspects of the reality i am studying and to enhance the common and shared knowledge about the subject. the questions i 'pose to the field', the question i interpret 'coming from the field', as well as, my positionality and the practicalities (such as the freedom/constraint i experienced ‘inside’) all impinge on both the research- process and the power dynamic on the ground. future implication of this research for others moreover, and more importantly, all these aspects impinge on the life of others, either participants or future researchers. on the one side, prisoners may be harmed, abused, psychologically distressed (or feel better) by the research work. on the other, researcher’s actual possibility of getting access (and in what form) to a custodial institutions could also be strongly influenced by the previous performance of fellow researchers. however, as a researcher, i might feel a duty to pursue knowledge even if that might be detrimental for colleagues or create some kind of problems to either future researchers or participants. difficult and ethically relevant decisions must be made trying to reach an acceptable balance between knowledge, self-censorships and ethical imperatives. doing research always imply a difficult balance between opportunities and constraints: ones that, at least in this particular fieldwork, swings between turning a blind eye, and becoming a whistle blower. i feel and i try to pursue knowledge that is not detrimental to those imbued in the situation, notwithstanding their particular position on the field. i do not tell necessarily all the truth, but i am not a fiction writer either and i put clear limit to my practice of self-censorships (sim ; see also drake ). here the issue of advocacy come into the picture; i agree with hammersley where he suggests that ethnographers do not necessarily need to be advocate of those they study (i am not); i agree that the ethnography can, or even ought to ‘produce knowledge of phenomena that are independent of it’ ( ). i also think that questions must address relevant issues at stake in society to be worthwhile; that’s why i decided to study violence and power and i decided to doing so doing ethnography on prison officers using force. other positions on the issue could have been possible and feasible as well. bearing witness to knowledge or doing something for the participants? ethnographers, journalists and photographers are sometimes accused to be voyeur, abusing the situation instead of doing something meaningful and useful for those personally involved in the situation under study. this commonsensical position might well find estimators and might present some interesting points; yet, it is important to bear in mind that anybody has her or his own duty depending on her or his position in the field. knowledge and its values are at risk working inside because it is often quite difficult to get rid of the shame one may feel when observing or talking with someone in a very uncomfortable situation or in psychological distress. i felt like that more than once. yet i am not trained to be a social worker, nor do i want to be. although there might be different reasons or occasions to actively intervene in the situation in order to reduce sorrow or help someone to exit from a particularly difficult situation, this is not what an ethnographer is normally required (or capable) to do (hammersley ); her or his duty, instead is to pursue knowledge to try to help to comprehend the situation under study; possibly also the way in which those problem emerge and how can they be challenged. to express my own position that greatly differs from marquant’s one who decided to become a prison officer to study them as insider, i quote again hammersley ( ) who, referring to a study of ned polsky ( ) suggests that if someone wants to be a ‘social worker’, or for that matter a ‘correctional officer’ (or, we might add, a political activist), that is ‘their privilege’, but that they should not do this in the name of the social science (hammersley : ). following hammersley’s critical stance to ethnography and his call for critical realism in qualitative research (which as i already said is my perspective as well), i slightly disagree, however, with his normative position and hierarchy of values regarding which research approach is better or worse than any other. in particular, i slightly disagree with hammersley when he openly writes that partisanship (so also feminist research?) and participatory inquiry ‘they do not constitute research’ ( ). they are research and in prison research they have produces some of the more significant piece of research. on the contrary, i think they do enrich the ethnographic landscape helping readers to get a better partial picture of the reality that all those particular ethnography attempt to (partially) represent. moreover, particularly so in prison ethnography, how can anybody fail to recognise the very rich heuristic approaches used, and the insights offered, by those who attempted to do research differently in a way or another? i think, among many others, to outstanding research such as: bosworth ( ); bosworth en al. ( ); jewkes ( ; ); phillips ( ). those works strongly influenced the practice of prison ethnography and are widely considered to be very useful partial descriptions that must be considered by any researcher doing research inside. each of them, and, more importantly, together, they offer a wider set of lens, then the one proscribed by hammersley to try to comprehend particular aspects that might be otherwise be overseen or even denied. bosworth greatly enriched the approach to gender ( ), border criminology and the detention of migrants ( ), jewkes to audience study at large and masculinity, phillips and earle ( ) both to ethnic issues, research methodology and intersectionality. how can anybody dismiss all this? moreover, that fussy set of different approaches constitute the reality of contemporary research; a reality that has developed in different types and styles of ethnographies at least since the writing culture debate. and what about convict criminology (ross and richards ) then? i would rather try (this is what i try doing) to follow a less radical and partisan approach, to find collaborative ways to pursue and share understanding embedding different perspectives, being opened to new approaches, collaborations and methods. i intend to conclude this section disclosing a regret of mine. i regret that i have not had any chance to use mixed methods which is one kind of approach that i am particularly interested in; yet, the emerging complexity and the uniqueness of the data emerging from the field ethnographically suggested me not to try doing it in this occasion. complexity, in fact, cannot be easily grasp form one stand point alone with only one theoretical framework and one restricted self-referential approach. i prefer to look for a collection of plausible set of ways of doing research with the goal to produce an ensemble of plausible descriptions that might relate, in different ways to one another trying, by doing so, to contribute to pursue a better collective knowledge that might, as a collateral outcome, contribute to help others governing some particular social issues at stake. on the genesis of the research just like in many other ethnographies ‘the genesis of the study was somewhat banal’ (crewe : ); unlike ben crewe’s interest that developed only at the end of his doctorate, my interest in prison marked my entire career both as photographer and researcher. in fact, entering prison for a documentary project in the early s strongly affected me ever since. during the first visits to some italian prisons in the s i shot no pictures at all and just decided that i needed to study prison academically to pursue my ideas; my previous study in photography did not suffice. therefore, i started to study prison and sociology of deviance and sociology of law already as an undergraduate student and, some years afterwards, i decided to apply to become a phd students with a research project focusing on prisoner’s resistance based on observation and visual methods. although prison was in the picture from the beginning of my phd, the thesis developed differently than i had previously expected. i remember antonio chiesi lectures on research methods at the graduate school in which he stressed the researcher’s need to be open and sensitive to the field, particularly so, in the initial stage of the research; roberta sassatelli and mario cardano guided me through all the journey; chiesi, as well as luisa leonini, always granted me his precious time, suggestions and critiques. meeting david silverman and briefly discussing with him on my research was also an eye opener. being a vising fellow at the centre for criminology, university of oxford, and bosworth’s lessons and personal suggestions have been crucial. the natural history of the research three [four at the time of the discussion] years ago, the initial intended goal of this ethnography was a comparative study of the prisoners’ resistance tactics in two very different wings of one male italian prison characterised by very diverse prisoners social position that i already knew. my personal biography shaped that research topic. my previous experience inside custodial institutions – both as university lecturer in sociology of communication and as a photographer doing documentary projects inside (visser and vroege ) – were all characterized by my position inside; since my first experience, in fact, i have always been mainly if not exclusively interested in prisoners and therefore i had always worked side by side with inmates; that position reinforced my initial cultural and political advocacy and framed my ‘obvious’ standpoint in this research as well. both my imported culture and the socialization within the prisoners’ cultures inside different prison settings for some years, played a role in it: i was definitely on prisoners’ side, then. before winning the phd-student position at milan university, i have been a doctoral student in sociology at the university of turin where i followed all the theoretical courses they offered. here i want to thank the director of that doctoral schools for the priviledge they granted me to be doctoral student at the university of turin. however, working for about twenty years, intermittently, on prisoners’ side did not stop my curiosity and my efforts to continuously question what i was doing, and the reason why i was doing it in one particular way. over the last few years, then, i begun to feel more and more familiar and, at the same time, critical with the quite homogenous italian academic discourses about inmates’ world. these discourses were mainly depicting inmates as victims, in a way or another, and often completely forgetting those working inside, either custodial or medical staff (contra, sarzotti ). during the initial phase of this research in reggio emilia custodial complex, i slowly started to feel a new curiosity. i progressively understood that i wanted to challenge my personal understanding about prison officers focussing on them straightforwardly. beforehand, i had always seen officer mainly, if not only, as ‘the other’ on the wing; as useful social actor i needed to do my job inside mainly as turnkeys. i have to admit that the book the prison officer (liebling ; liebling et al. ) gave me new lens to see the keepers and the kept differently. since her first edition of the prison officer book which re-started to fill in an almost empty research field and prompt new academic research, following her lesson, i started to explore the much more reach literature about police and policing that was completely new for me at that time. through those reading, a new curiosity about italian prison officers had developed into an actual scientific interest through the intertwined practice of reading literature on prison and prison officer (and prison staff and police more broadly) and being in the field with a new shifting, and less fixed, standpoint and attitude: i started to be sceptical about whose side was i on. ‘whose side are we on?’ (becker ) is an old lesson in ethnography dismissing the call for neutrality (see also bourdieu ). the dilemma of being on either one or the other's side is a well-known longstanding issue in the social science (becker ) then imported into prison research (liebling ; sim ; drake et al. ). both liebling’s and sim's papers were very instructive to me yet presenting two opposite visions and implying two very different research agendas; sim, a prison abolition activist, being somewhat a crucial exponent among critical prison scholars, and liebling the one who introduced the appreciative approach into prison sociology . during the ethnography, i progressively become more aware that deciding on whose side to stand would have a strong impact on the construction of the field [here my constructionist theoretical position become clear (berger and luckmann ).] (see drake et al. ). trying to be neutral (or should i say as little partisan as possible) or taking one of the possible sides in the field would have given me very different lens and keys through which to observe and enter into certain areas of the field, participating and observing to one activity or another. furthermore, this crucial methodological decision would embed some epistemological assumptions and would also have significant ethical implications of one sort or another. from the study of the practice of resistance to the ethnography of the power relation between custodial and medical staff moving from the doctoral school in turin to that in milan the research topic changed significantly: from the study of the inmates’ practice of resistance, towards the ethnography of power relation between custodial and medical staff. during the first year as a doctoral student, in fact, i have become more liebling has been serving as director of the institute of criminology’s prisons research centre at the university of cambridge. interested in how and to what extent power was actually legitimately and not- so legitimately exerted, negotiated and delegated (and resisted as well) in practice by the uniformed and the other staff. in other words, the research focus started to shift towards the officers’ side and, in particular, to the way in which the institutional governance was exerted on daily basis on inmates taking into account what is usually referred to as the problem of order (sparks et al. ). of course, by doing so, i would necessary need considering what goffman called the underworld and the prisoners’ resistance anyway. de facto, these embodied and engendered interactions between the staff (both custodial and medical) and the kept become the focus of the research. two main ‘opportunistic’ consideration guided, my choice toward the study of staff as well as, my decision to study it in a forensic hospital and in a prison. firstly, both ethnography on custodial staff (but see: bennet et al. ) and study in forensic hospitals are not present in italian sociological and criminological literature at all, and are also rare abroad (at least in american and british literature). secondly, the custodial complex in reggio emilia seemed to be the right setting to study these power relations because it included in two identical facility one next to the other, on the one side a prison (for defendant on remand), and on the other an asylum. at this stage the power relation between uniformed and medical staff was thought to become the central topic of the research. observation and ethnographic interview staying on basis grade officers’ side, but still being “other” on the field. only a few weeks later in the field, however, i already thought that my focus on the ethnography of power relation between custodial and ‘psy’ staff needed to be though more thoroughly. the topic seemed to be too large to me to be adequately controlled through observation by one researcher alone; it would be a very interesting topic for a wider research group though. i needed to refocus the goal; yet, this was not an easy task. furthermore, my position in the field had to be redrawn since there was nothing like the staff inside (bennett et al. ). medical and paramedical staff have their own medical directors while uniformed staff have a prison officer commander (a chief inspector) that is governed by a director (infra, chapter ). already during the initial phase of the fieldwork it clearly appeared that power relations, hierarchies and loyalties of custodial and psychiatric staff were continuously constituted, reconstituted and contested on the wings by all parties on daily basis. as it is now widely recognised there were no homogenous cultures in any of the professional groups; nevertheless some macro differences were visible between one group and the others and those would have been my research focus at that stage. on some topics the difference between different staff crossed profession and seemed to be more influenced by other individual characteristics like political opinion, gender or age. the sociology of profession and, more clearly, the participation to the life in the wing urged me to reconsider the issue of my position once again. psycology and psychiatric professions are often referred to in the literature as ‘psy’ staff. educator play a minor role in these power relation and are very rarely present in the wing, mainly to talk to an inmate that cannot go downstairs to the educators’ office. on the contrary, the priest is a key figures in the day to day life of the wing but his presence inside is very sporadic and should be studied in a different way. as i have already discussed, my final decision was to stay on prison officer side and to focus on prison officers practices using both observation and interviews; following lieblings suggestion ( ), however, i decided to include in the picture some other actors involved in the interactions: psychiatrists, psychologists, nurses, chaplain and educators. to decide to stay on prison officers’ side was not enough. more precisely, i had to decide whether to stay with the chief inspector, the managers or with the basic grade officers since formal hierarchies in a quasi-military environment do matter and do structure the observable interactions. i decided to stay by the basic grade officers simply because they are the ones who do rule the wing in practice; prison officers are ‘the street-level bureaucracy’ or ‘the local police’ inside, as a prison officer described his own role to me in an informal conversation. this decision simply implied to stick to the wing where basic grade officer operate, day in day out. sticking to one part of the facility was something others (bosworth ) had done before. i was puzzled whether to follow bosworth example or to stick to crewe ( ) suggestion to try to get the wider picture. eventually i decided to stick to the wing level and to move to other areas, such as the yard, only when useful (i.e. to have a better environment to conduct an ethnographic interview gobo ). working closely with the basic grade, i often found myself at ease and to be honest some time i enjoyed the ‘atmosphere’. i did not experience such a social distance between prison officers and i due to some kind of similarities in the family background. something quite different than what crewe argued about in his research identity and loyalties (crewe : - ) in his appendix. in his note on the research process, crewe writes: i found myself more at ease socially with the prison’s teaching staff and management team then i did with basic grade staff. but like other researcher (jewkes ), i also felt considerable sympathy for most officers given the emotional demands of the job […]’ (crewe : ; emphasis added). on the contrary, i found myself very quickly at ease with basic grade staff and pretty quickly started to comprehend (and have some sympathy) with their masculinity (which i also incorporate, yet trying to resist it at least to some extent) and somewhat simple and unsophisticated approach to their life and profession (yet, some were intellectually sophisticated; few even had or where studying to get a university degree; few knew a lot about art and cinema). probably, my social position influenced my preferences and sympathies in the field. in fact, i am the first with a university ba in my family. i grew up in the outskirt of a big italian industrial city, turin, just meter away from the biggest fiat industry plant. an urban area in which young gang confrontation was very normal at that time and where violence was a daily occurrence for me. i have been beaten for the first time when i was only six by a group of four guys; two were much older than me. i was playing in the public garden close to my parent’s flat. i had just received my first bike and i did not want to lose it right away. however, my resistance did not help. then, i was not able to react physically, despite my strong appearance, but i screamed loudly and i tried to strongly hold my bike until i could. they took it away from me brutally, in few seconds. i still remember that episode clearly. over the following years, until my family gained a much better economic standing, and we moved to a much more ‘comfortable house’ in the countryside, i have been robbed many times and been beaten but a few ones in that horrible ‘hood’ that had the same awful name as the fiat main factory: mirafiori. coming of age in such an awful area (at least to me), i learned how to live my life on that kind of streets coping with that kind of social milieu, sexist jokes and racist banters, and to some extent learned to like it as well (yet, maybe i should not write it). prison officers’ infancy was often not that different to mine; often theirs had been even worse, i have learned in the field. furthermore, my previous experience inside a lot of prison wings both working as photographer and serving as university lecturer in sociology of communication helped me in making me feel not too uncomfortable while being inside the wing or when moving ‘freely’ inside a prison, except the crucial issue of seeing person beneath bars which is still today unbearable to me. i knew that prison could be an unsafe working place, but i would definitely feel easier and safer inside a prison now (in my capacity of researcher) than in my original neighbourhood when i was a young boy. being pragmatic and honest, over a period of many years, i have only experienced a few soft aggressions and i have not been beaten seriously inside any prison yet. the only quite serious episode occurred in this ethnography due to the final focus of the research. being hurt, and it occurred softly, was in the picture. yet, i have also been hurt significantly regarding my psychological wellbeing and emotions. on access in the first period of my observation i was really very alert to get a sense of the situation. due to my previous experience in prison, my first impression was a kind of familiarity with the new setting; yet, i quite soon realized that the new one was a particularly heavy and violent environment; particularly so the asylum. i initially had the impression that the forensic hospital was just like any other prison i had previously visited. this kind of familiarity gave me some confidence about the feasibility of the research project; however, i knew that too much familiarity with a subject could also turn out to be problematic making ‘taken for granted situation’ invisible. i did not have any experience on being on prison officers’side yet, therefore i decided to adopt this new standpoint trying to gain in this way new possible understandings of my topic to challenge my old assumptions. during the initial stage of the fieldwork ‘on prison officer’s side’ i realize that my position in the field was still only a theoretical assumption and a methodological decision of mine, that that was not yet reflected in the actual interactions with prison officers at all. in fact, while i pretended to be on their side, some prison officers put some distance to me and in few occasions one particular officer did not seem to trust me at all (why should officers trust a researcher studying them in a country in which media only have prison officers in their agenda when accusing them of misbehaviour or illegal beatings?) trust had to be gained in the field. in fact, initially i was ‘handled’ by prison officers with suspicion, surprise and some forms of curiosity too. over a period of less than two months the situation changed dramatically and i am still impressed as to how few officers became really open to me disclosing critical issues and displaying openness and trust to me. while a couple of them remained quite critical to me during the entire research, a few suddenly started to be very open and friendly to me, one after the other. i do not quite get how this openness towards me have emerged in such a short time and i still consider it a bit naïve and maybe a sign of the officers' frustration and their need to talk about their situation inside with someone (by law, normally they must keep secret to any visitor, let alone to the press or researchers). on trust i was told by a prison officer that i was the first person he and his colleagues had knew so far who actually seemed to care about them and their job. i tried to make it clear to him immediately afterwards that this was my job and that even though it might be true that i did care, in a way or another, about officers, that would not necessarily imply that i would only show sympathy to them, let alone admiration. in fact, i explicitly explained that i did not intend to do any kind of appreciative enquiry and i underlined that i was conducting my research paid only by the university and that i did not received any further funding neither from the department of the judiciary administration, nor from any other public or private body. i explained that it would be pure academic research conducted for its own sake. i continued by saying that, although i hoped my research could help to better understand some particular aspects of the prison officers’ job (i did not specify any details, nor has he asked me for them), i was quite sure that it would not necessarily do any good to him or to any of his colleague in particular; hopefully nor would it do any bad either (saying that, for obvious reasons, became very problematic when the research topic turned to prison officers’ use-of-force; that issue is in fact very critical indeed as hopefully became clear from the introduction of this manuscript). the first practical sign of trust that i clearly recognised was an invitation to apply to have a room in the officers’ dormitory inside the prison wall. the suggestion to ask for a room come from three prison officers during a meal at the canteen; they proposed it saying ‘we’ll have fun together’. following their invitation i did apply but, officially, there was no room left, i was told by the governor’s secretary. i took it badly because i knew there were rooms free. yet, that bad experience and feeling of being refused by the management, turned out to be an unexpected turning point to me. i do remember some officers commenting on the result of my failed request. now you can understand how they [upper grade or management; unclear] consider us. they just mind their own business…they do not give a fuck of us as they do not give a fuck of you, of course! [with a smile] now you can start to get it! they smile in front of you and then…they get you! welcome. [his gesture reinforced the idea with a sexual masculine stance] (prison officer, field note). i have never obtained that room. i even formally asked to the area manager if there was anything i could do to pay for a room inside; the point was that it seems to be forbidden to host outsiders; yet others have used it repeatedly, officers told me. anyway, that refusal turned out to be one of the crucial can opener for my relationship with basic officers. a clear sign of me being dismissed, just a first example of the hierarchical distance ‘between the wing and the office’. since i was not granted any privilege, officers thought that i could better understand them, one told me. a basic grade officer discussing informally about this point with me in the wing offered me a plausible interpretation of it. he told me that through that refusal he and his colleagues started to trust me. i have been unable to have a room inside; therefore, i had but limited power and i was not on the manager side, much less than they had previously imagined seeing me walking freely inside. after a week or so, when i asked to the officer why he and his colleagues wanted me to stay with them at night, he told me that they just wanted something new to occur; having me with them, therefore, was but a tool to brake their routine [boredom] either in shift and during free-time. in other words, the refusal to give me a room in the barrack ‘showed’ them my vulnerability and the weakness of my power, even though, that was not really the case; but since it worked in that way, that became the local interpretation of it. the local constructed and shared reality. afterward, other episodes in which my alleged ‘power’ was publicly undermined, such as an order to move away from a particular situation with no clear or polite explanation, progressively helped me to gain some kind of trust among officers; yet a couple of officer still avoided me until the end of the fieldwork and have not appreciated my ‘surveillance’ at all. one told me explicitly he considered nonsense to have someone like me walking around on the landing, moving even more freely that he was allowed to (in fact officers cannot move freely from one place to the other, that have to stick to the places they are assigned to during each shift). he told me bluntly that he thought to be the police officer there, and did not clearly get who i was (even though he would know it pretty well at that stage). a turning point in the research biography: being there during a prison officer assault my topic [on officer’ job] was something too mundane to prison officers to deserve any academic interest. they would not get why i could be interested in them; some officers asked me in different occasions why i had chosen such a subject if it was true that it was my choice and nobody oblige me to do it. as i already said before officers have been both curious and suspicious about my presence from the outset, like a few reported. but at the same time some prison officers seemed to be very pleased about my interest in them and told me that they knew that many of his colleagues would immediately by my book about them as soon as it will be distributed in the bookshops. notwithstanding this curiosity and some kind of trust, in practice suspicion was obviously there as well in a form or another most of the time; particularly so in the beginning. i was told by one of them that, initially, the main hypothesis about my actual role was that i was on duty for the ministry of justice to control prison officers’ (mis)behaviour: that was a particularly reasonable hypothesis of theirs because when my ethnography started it was a period of media attention about prison police misbehaviour in italy; particularly so inside the forensic psychiatric hospitals. therefore, in the beginning of my research prison officers’ response to ‘critical episodes’ were performed carefully taking my presence seriously into account and behaving accordingly. officers’ behaviour was very soft, very different from what i learned just two months afterwards. in the beginning, during the squad intervention following critical episodes, i always made my presence very visible shouting loudly ‘i am hear’ and standing visibly in sight to show no interest at all in targeting misconduct; which in fact was and is not the focus of this work. yelling loudly my presence was surely a perturbation but i was told later, that it had been a right strategic attitude to gain trust, even though there was no strategy in it at all and i simply thought it was ethical to behave like that; after all i was an ethnographer and not a spy. my colleague and i had quickly realized that you were not here to get a ‘journalistic scoop’ against us, nor were you here to cheat on us or still secrets to fuck us, mind our business, or put us into trouble (ethnographic interview with a prison officer). one ethical issue initially, each time a critical situation happened, i would immediately leave the area to let the prison officers to do their work ‘off record’. i never commented on those episodes and, moreover, i had no problem to admit when asked about it, that i had used some soft slapping with my kids few times, which is true. i was told that my non-intrusive and very visible presence during critical events has been really appreciated positively by almost all guards and, later on, it turned out that it has been one of the keys, as i have understood it, to the ‘real’ access to their actual practices during violent confrontation that i accessed only afterwards, in which a different set of less formal ‘institutional’ practices have emerged, in more recent times. one could say that gaining trust with participants by showing no special interest for one particular issue which is interesting for the researcher is ethically disputable. i would agree, at least partially. however, at that time i had no particular interest in crisis since my focus was on something else. only after being involved in many of such problematic events i understood that they might in fact become the topic of my research. initially, i was mainly interested in the day-to-day power relation on the wing and i simply tried to avoiding as much as possible to interfere strongly into the officers’ daily activities; moreover as already said i decided to spend most of the time inside in one particular detention wing that i had selected for my observation in order to slowly become another actor of the wing. in those institutions there are some medical staff that are normally employed for a fix period; therefore, staff are used to interact with new personnel. one very important decision i took was ‘never cheat’; even though occasionally could have been very useful. not only i tried to follow that basic ethical prescription, but i’ve always been open to answer personal questions, honestly in order to balance the relationship with officers as much as possible. the turning point until the episode i will describe in a moment, only inmates’ use-of-force – normally referred to as prison violence in the literature – and self-harm was very visible to me on the wing. taking into account the visible and audible amount of prison violence, let alone the narration of it, i was exposed to on daily basis and the relatively soft response i experienced in the wing, i became convinced that ‘the [prison officers] action was “somewhere else”’ (crewe : ), in literal sense; in other words, i knew it was in the picture, but had not yet occurred in front of me. of course, in the beginning of my research almost all the uses of institutional force, legitimate ones included, were hidden from my sight for obvious reasons i have already previously introduced. a very unbalanced situation between the inmates’ and patients’ use-of-force and the institutional response become clear to me and seemed totally inconsistent. later on i learned that any ‘lessons’ [use-of-force of different degree to respond to a prisoner’s misconduct] could be easily postponed to a nearby future when possible testimony, like me or any other medical or civil personnel, have left the institutions. prison officers, like or more than any other social actor, cannot be so naïve to continue doing things as usual regardless being or being not observed by a researcher studying openly them: this perturbation is commonly known as ‘research effect’ in qualitative methodology textbooks. i was wondering why the researcher effect should not also apply to this filed. of course that effect would impinge on the situation more strongly whenever officers would use force when not strictly necessary or in a too heavy manner or in case of any other clearly prison officer’s unlawful conduct. on the contrary, when finally trust had been gained with few officers, it has then spread to others (of course, trust, just like reputation is a process and is not gained one and for all and must, on the contrary, be reinforced continuously, one day after the other) quite quickly. eventually, a lot of different set of practices that i had never seen before as yet, enter into the picture. a ‘new’ research topic experiencing the aftermath of the assault just reported above definitely helped me to move beyond my previous assumptions. after that episode i started to see things differently trying to grasp new understanding from prison officers’ small talks during fieldwork, actual observation and finally interviews. i started to question with even more intensity all previous understanding beginning to develop a new cognitive prospective. the harshness, the dangerousness, the excitement, and the boredom of working inside become a significant aspects of my doing ethnography. all these embodied aspects of the experience of doing research acquired new meaning. from that moment onward, i started to develop a new sensibility about the field. after that episode i interviewed one staff; the interview was planned and i did tried to do it anyway. i was very nervous in that occasion; yet i started the video-recorded interview. after a few moment, in response to an interviewee’s comment on violence i started crying and i could not easily stop doing it. i was feeling very insecure, embarrassed, worried for my public face. re-watching the video of that interview i realised that the first thing i told him when, eventually, i stopped crying was: ‘please do not say what happened with me to anybody, please!’ the interviewee told me to be quite, to stop the research for at least a couple of weeks and, anyway, to do much shorter shifts: you are not superman, relax and take it easy; just accept you are vulnerable too …and take some time for yourself. you can’t stay inside in such a wing for fourteen hours a day, day in day out…it is simply too much. luigi, don’t worry about crying. it is just normal. all of us have had such episode…our mental health here is challenge strongly. you need to find a balance and relax. now just go home. i do not want to see you for a couple of weeks, ok? i stopped for a few days and then i just need to go back, and i returned to the field. i was worried that not doing so, my emotions, fears and anxieties could refrain me to go return inside again. when i re-entered the wing and over the following days of my fieldwork i experienced a pretty normal prison atmosphere that was not quite different from the one i had previously experienced; it was like nothing had happened; yet, i had acquired a different sensibility and some new difficulties in dealing with the violence in the wing that i had to learn to overcome. both the wing environment and its routine started to look different to me. i started to interpret and re-interpret conversations among prison officers and the conversation they had with me before, as well as the new ones, differently. i become aware of the large emphasis that officers usually put on the institutional use-of-force, yet the issue would have been there even without my presence. although, i have tended to interpret the ways in which officers emphasised the importance of the use-of- force when talking to one-another mainly as a response to my presence in the field (a perturbation or, said differently, a researcher effect), i must note that such conversations and the perturbation embedded in it did attract my attention and helped me to shape a new sensitive concept i had not thought about before so far. a few concluding thoughts ‘it is a difficult balance to strike between recognizing that there is no ‘view from nowhere’ (bourdieu : ) and that you are not the story but the storyteller’. (drake et al. : ). first of all, i will only sketchy present some points that emerged discursively in this text (a complete resume of each chapter is provided in the last section of chapter ). ) this research is the outcome of an ethnography; by no other means the same type of analysis, such as the ‘cycle of the use-of-force and violence’ could be obtained. this is not to say that this thesis offers a better kind of knowledge; it is simply to say that it is likely to be a thesis on ‘doing’ ethnography as well as a thesis on the use-of-force. ) this research started with one goal and ended up studying something slightly different particularly relevant both in the academic and in the public sphere. ) this research draws extensively from interactionist literature and is a homage to those scholars who guided me in this interactionist path through their previous work and insights whether within or without ethnography. ) this thesis is an attempt to ‘doing’ ethnography looking closely, for quite some time to a subject in order to grasp not only discourses and emotions (which are crucial components of the ethnographic enterprise), but also to construct a map of what was observably going on ‘inside’ to try to untangle the complexities encountered on the field. the ‘cycle of doing coercion’ is not intended to show any structural truth; yet, it provides a clear map that seems to work quite smoothly most of the time empirically. its only goal is to help the readers to orientate themselves in grasping how officers exert force on prisoners after a so called critical events and how they do it discretionary, despite all the rhetoric public accounts. being too detached and far from actual flesh and blood people, that cycle offers only one side of the issue. very relevant are also the vignettes that have been used to narratively describe some crucial episodes reconstructed ad hoc. why studying the use-of-force? despite the reasons why not to study this topic, which mainly regard the consequences that the publication of the ethnography may have with the possibility of the researcher and fellow colleagues to continue doing research inside and the particularly sensible topic that might also impinge with the vulnerability of the participants and the ethical issues, i prefer to say again why, instead, it is necessary to start studying the use-of-force empirically. despite good intentions and best practice, in fact, the crucial issue of coercion remains the characteristic feature of all enforcement agencies working ether within or without custodial institutions in italy as well as abroad. the use-of-force and violence impact strongly both on the person in uniform whose duty is to use force if ordered to do so and, of course, also on the persons in custody, which by the way, are not always only the docile victims sometimes described in the literature. i tried not to be judgemental even though, doing so it has not always been easy dealing with issues that strongly impinge in human rights and peoples life and death. the issue is complex and i do not pretend to offer any concluding remark here. this thesis is in fact simply the first attempt to trying doing research on the use-of-force in prison empirically via ethnography within the interactionist framework. appendix ethnography, photography and voyeurism and the disciplinary frame: a note on visual methods john tagg wrote a crucial book in the burden of representation; recently; he has published the disciplinary frame ( ) (see also sekula ). unfortunately, ethnographers (except those visual ethnographers focussing exclusively on it) seem to pay no attention to neither of the two; nor to visual methods (rose ). in those books, the crucial issue of the relationships among research (in particular through photography), science and the state have been discussed thoroughly in relation to foucault’s framework. in that perspective, both voyeurism and espionage (words re-used by hammersley ) are intrinsically linked to the state apparatus' (to use a well-known althusser’s term) hegemonic discourses that, by the gaze and the archive govern, discipline and control those under the state’s authority. in those same years, garland wrote on the relationships between ethnography and surveillance-control as well, and his position is widely recognised in the field of prison sociology. in garland’s section of punishment and modern society ( ) titled ‘normalizing deviance’ ( - ) garland, following foucault, not only problematized doing ethnography as a methodological techniques, but social sciences as such in so far as they also exert surveillance, control and power over the subjects under study. this is particularly true in ethnography conducted in custodial settings. ‘the examination’ is, for this system, a central method of control. allowing close observation, differentiation, assessment of standards, and the identification of any failure to conform. so too is the dossier or case record, which allows the characteristics of the individual to be assessed over time and in comparison with others. from this time onwards, writing about individuals ceases to be a form of worship fit only for notables, kings, and heroes, and becomes instead a form of domination to which the powerless are more and more subjected. out of these practices emerges a detailed and systematic knowledge of individuals, a knowledge which gave rise, in turn, to the various ‘human sciences’ of (garland : ) criminology, psychology, sociology, and so on. and, as foucault is at pains to point out, the procedures of observation, examination and measurement which allows this knowledge to develop are, at the same time, exercising power and control over the individuals who are isolated – and in a sense, constituted – within their gaze ( ). garland point is crucial, and doing prison research, either ethnography or photography, it is important to bear it in mind doing research. however, it is neither necessary, nor useful to overestimate that ‘problem’ either. awareness of the issue, reflexivity and a sound methodological approach might allow any researcher to overcome the issue, or at least to control it as far as possible; doing ethnography inside following one’s duty is based on the rationale to pursue knowledge. voyeurism has become a problematic issues in doing ethnography (denzin ; hammersley ); yet, it is a risk that worth taking pursuing difficult fieldwork that otherwise would simply remain understudies or even completely denied. as i wrote elsewhere in different occasion writing about visual methods (rose ) and particularly on photo-elicitation interviews (i.e. gariglio ), i just want to conclude this very short appendix by adding that photo-elicitation allows the researcher to use photographs to inspire a conversation, a dialogue, hereby affording respondents-participants more freedom to construct their narrations than is possible in standard semi-structured interviews . by becoming the ‘experts’ (on what was represented in the pictures), prison officers and other staff offered a set of multi-layered interpretations and descriptions on the images that will be discussed elsewhere. however, i simply on interviewing inmate, see schlosser ( ). intend to stress here that photo-elicitation interview serve as invaluable research tools not only for unpacking relevant factors, stories, and personal experiences, from staff and prisoners standpoints on the use force, but also for inspiring and then facilitating dialogue between researchers and interviewees. photo-elicitation served as an ‘icebreakers’ in this particular field. this sketchy appendix is just intended to serve an example of a possible pathway for using it, and much more methodological and substantive research must focus on the pros and cons of applying this tool within custodial institutions. in conclusion, this note only attempts to motivate researchers to use photographs during interviews to unpack the complexities of custodial worlds by affording those who experience it a voice in a different way. image a. . road sign (reproduction of the printed image used for photo-elicitation interviews (image: luigi gariglio). image a. . a prison wall (image: luigi gariglio). image a. . the asylum closed wing (reproduction of the printed image used for photo- elicitation interviews (image: luigi gariglio). image a. . an asylum’s cell closed wing (image: luigi gariglio). image a. . a prison officer after being assaulted (reproduction of the printed image used for photo-elicitation interviews (image: luigi gariglio). reference aboim, s. 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( ). the lucifer effect: how people turn evil. london: rider books. zimring, f. e. and g. hawkins ( ). incapacitation: penal confinement and the restraint of crime. oxford: oxford university press. community-associated methicillin-resistant staphylococcus aureus: epidemiology and clinical consequences of an emerging epidemic clinical microbiology reviews, july , p. – vol. , no. - / /$ . doi: . /cmr. - copyright © , american society for microbiology. all rights reserved. community-associated methicillin-resistant staphylococcus aureus: epidemiology and clinical consequences of an emerging epidemic michael z. david* and robert s. daum section of infectious diseases, department of pediatrics, the university of chicago, chicago, illinois introduction ....................................................................................................................................................... emergence and history of mrsa ............................................................................................................ what is community-associated mrsa? ................................................................................................. ca-mrsa: an epidemic and its origins ............................................................................................................ why did ca-mrsa strains appear and succeed? ........................................................................................... sccmec elements and ca-mrsa .................................................................................................................... main types of sccmec elements......................................................................................................................... sccmec types iv and v in ca-mrsa isolates ................................................................................................. virulence factors in ca-mrsa .................................................................................................................. pvl and ca-mrsa ................................................................................................................................................ pvl and ca-mrsa infections.......................................................................................................................... role of pvl in the pathogenesis of mrsa infections ................................................................................... other virulence factors in ca-mrsa strains .................................................................................................. acme ................................................................................................................................................................... the �-type psms ................................................................................................................................................ protein a .............................................................................................................................................................. other candidate virulence factors and mechanisms...................................................................................... non-�-lactam antibiotic susceptibility and ca-mrsa ............................................................... mupirocin resistance............................................................................................................................................. clindamycin resistance ......................................................................................................................................... reduced susceptibility to vancomycin and daptomycin .................................................................................. molecular epidemiology of ca-mrsa ................................................................................................. usa strains ....................................................................................................................................................... other prominent ca-mrsa genetic backgrounds ........................................................................................... st ........................................................................................................................................................................ st ...................................................................................................................................................................... st ...................................................................................................................................................................... st ...................................................................................................................................................................... st ...................................................................................................................................................................... staphylococcus aureus as a commensal organism: role of asymptomatic colonization ............................................................................................................................................... risk factors and high-risk groups for ca-mrsa carriage or infection in the united states ............................................................................................................................................... neonatal mrsa infections and maternal colonization and infection........................................................... children beyond the neonatal period ................................................................................................................. early reports........................................................................................................................................................ mrsa colonization prevalence in u.s. children is increasing ..................................................................... increasing burden of ca-mrsa infections among u.s. children................................................................ ca-mrsa pediatric infections outside the united states ............................................................................ athletes..................................................................................................................................................................... household contacts of mrsa patients............................................................................................................... emergency department patients .......................................................................................................................... urban underserved communities ........................................................................................................................ indigenous populations.......................................................................................................................................... incarcerated populations ....................................................................................................................................... cystic fibrosis ......................................................................................................................................................... military populations............................................................................................................................................... hiv infection/aids ................................................................................................................................................ * corresponding author. mailing address: department of pediatrics and department of medicine, the university of chicago, s. mary- land ave., mc , chicago, il . phone: ( ) - . fax: ( ) - . e-mail: mdavid@medicine.bsd.uchicago.edu. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m https://crossmark.crossref.org/dialog/?doi= . /cmr. - &domain=pdf&date_stamp= - - http://cmr.asm.org/ men who have sex with men .............................................................................................................................. veterinarians, livestock handlers, and pet owners ......................................................................................... livestock as a reservoir for human mrsa colonization and infection and the st sequence type .. veterinary practice as a risk factor for the transmission of mrsa between animals and humans ...... mrsa and meat or milk sold for human consumption................................................................................ household pets .................................................................................................................................................... clinical manifestations of ca-mrsa .................................................................................................... patients with sstis ................................................................................................................................................ invasive infections and necrotizing pneumonia ................................................................................................ treatment of ca-mrsa infections ......................................................................................................... uncomplicated sstis ............................................................................................................................................. severe infections ..................................................................................................................................................... prevention of ca-mrsa infections ........................................................................................................ mrsa recovery from fomites .............................................................................................................................. chlorhexidine gluconate and mrsa decolonization........................................................................................ mupirocin................................................................................................................................................................. retapamulin ............................................................................................................................................................ specific populations ............................................................................................................................................... athletes................................................................................................................................................................. jails and prisons................................................................................................................................................. references ............................................................................................................................................................ introduction staphylococcus aureus is the most commonly isolated human bacterial pathogen and is an important cause of skin and soft- tissue infections (sstis), endovascular infections, pneumonia, septic arthritis, endocarditis, osteomyelitis, foreign-body infec- tions, and sepsis ( ). methicillin-resistant s. aureus (mrsa) isolates are resistant to all available penicillins and other �-lac- tam antimicrobial drugs. they were once confined largely to hospitals, other health care environments, and patients fre- quenting these facilities. since the mid- s, however, there has been an explosion in the number of mrsa infections reported for populations lacking risk factors for exposure to the health care system ( , , , , , , , , , , , , , , , , , , , , , , , , , , ). this increase has been associated with the recognition of new mrsa strains, often called com- munity-associated mrsa (ca-mrsa) strains, that have been responsible for a large proportion of the increased disease burden observed in the last decade. these ca-mrsa strains appear to have rapidly disseminated among the general pop- ulation in most areas of the united states and affect patients with and without exposure to the health care environment. the purpose of this review is to detail what is known about the epidemiology of ca-mrsa strains and the clinical spec- trum of infectious syndromes associated with them, which ranges from a commensal state to severe, overwhelming infec- tion. we will also discuss the therapy of these infections and strategies for their prevention. ca-mrsa strains have been distinguished from their health care-associated mrsa (ha-mrsa) counterparts by molecu- lar means. ha-mrsa strains carry a relatively large staphy- lococcal chromosomal cassette mec (sccmec) belonging to type i, ii, or iii. these cassettes all contain the signature meca gene, which is nearly universal among mrsa isolates. they are often resistant to many classes of non-�-lactam antimicro- bials. ha-mrsa strains seldom carry the genes for the pan- ton-valentine leukocidin (pvl). in contrast, ca-mrsa iso- lates carry smaller sccmec elements, most commonly sccmec type iv or type v. these smaller elements also carry the meca gene and are presumably more mobile, although few explicit data support this notion ( ). they are resistant to fewer non- �-lactam classes of antimicrobials and frequently carry pvl genes. in addition to these genotypic characteristics, ca-mrsa strains affect a population distinct from those affected by ha- mrsa and cause distinct clinical syndromes. ca-mrsa in- fections tend to occur in previously healthy younger patients. they have been associated predominantly with sstis ( , , ) but have also been linked to several severe clinical syndromes such as necrotizing pneumonia and severe sepsis. in contrast, ha-mrsa strains have been isolated largely from people who are exposed to the health care setting; the patients are older and have one or more comorbid conditions. ha- mrsa strains tend to cause pneumonia, bacteremia, and in- vasive infections. ca-mrsa infections, far from being the clinical curiosity that they were in the mid- s, have become commonplace and have created a public health crisis in u.s. emergency departments (eds) and other clinical settings. a population- based study of mrsa infections in san francisco, ca, in to demonstrated that % of mrsa infections had onset in the community, with an incidence rate of cases/ , population; excluding those with a history of hospitalization in the previous year, the incidence rate was cases/ , population. there were many fewer hospital-onset infections, with an incidence of cases/ , population ( ). fur- thermore, a u.s. centers for disease control and prevention (cdc) study estimated that in , there were . culture- confirmed invasive mrsa infections in the united states per , population, amounting to , cases in that year. because an estimated % of culture-confirmed ca-mrsa infections were invasive ( ), it is likely that greater than , , mrsa infections, in total, occurred in that year in the united states. annual outpatient and ed visits for ab- scesses or cellulitis in the united states were estimated to have nearly doubled from . to . cases per , population between and ( ), and ca-mrsa isolates are vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ believed to be largely responsible for this rise. in some regions, ca-mrsa isolates account for % of community-associated s. aureus infections in children ( ). complicating the epidemiological framework, some commu- nity-onset mrsa (co-mrsa) infections are caused by ha- mrsa strains, perhaps related to the increasingly common management of complex ha-mrsa infections at home. thus, mrsa in the community has a complex epidemiology arising from the circulation of “escaped,” or so-called feral, ha- mrsa strains in the general population ( , , , , , ) and the newly recognized ca-mrsa strains ( ). the emergence of new ca-mrsa strains has important implications. large reservoirs of mrsa isolates now exist out- side health care facilities ( , , ). obviously, this im- plies that attempts in the united states to contain mrsa using currently accepted methods of infection control based in health care facilities are unlikely to succeed without a similar effort to control spread in the community ( , , , ). additionally, mrsa infections may be more expensive and difficult to treat than infections caused by methicillin-suscep- tible s. aureus (mssa) ( ). there are relatively few antibi- otic agents available to treat mrsa infections ( ). more- over, the available agents have important limitations, and the development of new antibiotic classes has slowed ( , ). s. aureus isolates that are resistant to each of the few antibacte- rial drug classes effective against mrsa have been reported ( , , , , ), raising the theoretical possibility of untreatable multidrug-resistant (mdr) s. aureus infections. with the antibiotic pressure exerted by the increasing use of vancomycin to treat mrsa infections, nine vancomycin-resis- tant s. aureus (vrsa) isolates have now been reported in the united states ( , , , , , ). vancomycin- intermediate s. aureus (visa) strains, first reported in japan in ( , ), have been identified more commonly in many countries, including the united states ( , ). the recognition of these strains represents an ominous threat ( ). perhaps a more important concern comes from the observed slow but steady increase in the level of resistance to vancomycin among unselected s. aureus strains that can occur with vancomycin therapy ( , , , ). therefore, clin- ical reliance on vancomycin—the centerpiece of our armamen- tarium against invasive mrsa infections—may no longer be possible ( ). emergence and history of mrsa in , soon after the introduction of methicillin, the first �-lactamase-resistant penicillin, strains of s. aureus that were resistant to methicillin were identified in the united kingdom ( ). from the s into the early s, mrsa infections in europe were limited largely to hospital outbreaks caused pre- dominantly by s. aureus phage type a (subsequently identi- fied to be sequence type [st ]); this so-called “archaic clone” gradually became infrequent and was replaced in the s and s by five prevalent clonal lineages ( , , ), although many mrsa backgrounds existed between the s and ( ). in the united kingdom, mrsa was rare until the early s and has since gradually increased in frequency as a nosocomial pathogen ( ). the first case of mrsa in- fection recorded in australia was in sydney in . thereaf- ter, nosocomial mrsa infections occurred sporadically in melbourne and sydney ( ) and later appeared in other cit- ies. most australian nosocomial mrsa isolates had a distinc- tive antibiogram, with resistance to trimethoprim-sulfamethox- azole (tmp-smx), erythromycin, clindamycin, tetracycline, and gentamicin ( ). western australia remained relatively free of mrsa until the late s, when a distinctive non- mdr (gentamicin-susceptible) mrsa strain appeared in a remote northern region and quickly spread to the rest of west- ern australia ( ). in queensland, eastern australia, in to , population-based surveillance of antibiotic resistance patterns of mrsa strains causing infections among inpatients demonstrated an increase from to cases/ million ac- crued patient-days for non-mdr (i.e., resistant to at least one non-�-lactam antibiotic and susceptible to ciprofloxacin)-resis- tant strains. a similar large increase was documented among outpatients during this period, from to cases/ million outpatient visits, suggesting a rapid dissemination of the non- mdr mrsa strains. at the same time, the rates of inpatient bloodstream infection and other sites of infection caused by any mrsa strain decreased by % and %, respectively, while among outpatients, the rates increased by % and %, respectively ( ). in japan, mrsa isolates have been prevalent in academic hospitals since the late s and spread into community hospitals in the s ( ), and while com- munity-associated mrsa infections have been reported ( , , ), the first clinical isolate known to carry the pvl genes in the ca-mrsa era was reported in ( , ). in contrast, in finland, norway, sweden, the netherlands, and denmark, mrsa infections have remained rare even in the health care setting, which has been attributed by many to strict surveillance programs that have been the norm for de- cades in each of these nations ( , , , , ). in , the first hospital outbreak of mrsa in the united states was reported from boston, ma ( ). in the s to the s, mrsa gradually became entrenched as an endemic pathogen in large, urban, university hospitals in the united states, particularly in intensive care units (icus). subse- quently, the percentage of s. aureus isolates from hospitalized patients in the united states that were resistant to methicillin increased from . % in to % in ( ). a diagnosis of mrsa infection was made for approximately , hos- pitalizations per year in the united states in to ( ). between january and june , the annual aver- age percentage of s. aureus isolates that were mrsa increased further to . % of icu and % of inpatient non-icu s. aureus isolates ( ). similar persistently high or increasing rates of mrsa among s. aureus isolates have also been ob- served for health care settings in many other regions of the world ( , , , , , , , , , , ). prior to the mid- s, investigation into the epidemiology of mrsa was limited largely to the health care setting because it was rare that mrsa strains would infect otherwise healthy people. the recognized risk factors then identified for mrsa infection and colonization included recent hospitalization; other exposures to the health care system; residence in a long- term care facility ( , , , , , , , , , , ) or an acute-rehabilitation unit ( ); the presence of an indwelling line or catheter; surgical wounds; chronic liver, lung, or vascular disease; malignancy; recent exposure to antibiotics; david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ intravenous drug use ( ); icu admission; and exposure to a patient with any of these risk factors for mrsa ( , , , ). what is community-associated mrsa? the terms ca-mrsa and ha-mrsa have been used to call attention both to the genotypic differences of certain mrsa isolates as well as to the epidemiological and clinical features of the infections that they cause. this sometimes loose interchange of terms has created confusion ( , , , ). an essential component of epidemiological studies has been to define the clinical burden of ca-mrsa and ha- mrsa isolates, both of which circulate in the community. important concepts bearing on these definitions are (i) the setting in which the mrsa infection begins; (ii) current or prior patient exposure to health care settings; (iii) poorly de- fined ca-mrsa patient risk factors, including prior mrsa infection; (iv) genetic characteristics and antibiotic susceptibil- ities of the causative mrsa isolate; and (v) the clinical syn- drome manifested by the patient. in , the cdc created a case definition for a ca-mrsa infection: any mrsa infection diagnosed for an outpatient or within h of hospitalization if the patient lacks the following health care-associated mrsa risk factors: hemodialysis, sur- gery, residence in a long-term care facility or hospitalization during the previous year, the presence of an indwelling cath- eter or a percutaneous device at the time of culture, or previ- ous isolation of mrsa from the patient ( , ). all other mrsa infections were considered to be ha-mrsa. this case definition was initially used to demonstrate that mrsa infec- tions were occurring among healthy people in the community without health care exposure ( , ). the case definition has been modified for the purposes of the cdc’s active bac- terial core surveillance program for invasive mrsa infections to exclude the previous isolation of mrsa as a criterion for ha-mrsa ( ). a simpler, temporal definition is often used to designate ca-mrsa. by this criterion, all infections occurring among outpatients or among inpatients with an mrsa isolate ob- tained earlier than h after hospitalization would be consid- ered ca-mrsa. infections meeting either of these temporal criteria are sometimes referred to as “community-onset” mrsa (co-mrsa) infections. other criteria used to define ca-mrsa infections relate to relevant isolate characteristics. ca-mrsa isolates have been pedigreed by their antimicrobial susceptibility profiles, their dna fragment patterns upon pulsed-field gel electrophoresis (pfge) ( , , ), protein a (spa) gene typing ( , , ), carriage of pvl genes ( ), multilocus sequence typing (mlst) ( , ), and the type of sccmec element carried ( ). definitions based on one or more of these isolate char- acteristics have been used to quantify the mrsa disease bur- den inside and outside the health care setting, but each one actually provides a different perspective. importantly, none of the genotypic isolate characteristics are helpful to a clinician caring for an acutely ill patient because assessing them requires molecular strain testing that is not routinely or rapidly avail- able ( ). when the cdc case definition is used to define the burden of disease caused by ca-mrsa isolates, two interesting phe- nomena can be demonstrated. the application of the defini- tion to cases of infection with mrsa with onset in the com- munity accurately identifies patients with infections caused by ca-mrsa isolates. however, if one uses the case definition to identify patients with infection caused by ca-mrsa isolates, the burden of disease caused by ca-mrsa isolates will be greatly underestimated ( , ), and this analysis yields a reciprocal overestimation of health care-associated mrsa dis- ease. if the cdc case definition of ca-mrsa were used in the acute-care setting to aid in the selection of empiric antibiotic therapy, many people who could be managed with clindamycin, for example, would be unnecessarily treated with intravenous antimicrobial drugs because they have an illness caused by a ca-mrsa isolate and not a multiply resistant ha-mrsa isolate ( ). the cdc case definition applied to patients with an mrsa infection is not a reliable proxy for the genetic characteristics or phenotype of the mrsa strain causing the infection. for example, at the university of chicago in to , the cdc definition would have classified . % ( / ) of mrsa patients as having an ha-mrsa infection. however, among these “ha-mrsa” patients, % of the isolates carried sccmec type iv, . % were pvl positive (pvl�), and . % were st (table ) ( ), traits attributed to ca-mrsa isolates. these data may have relevance to a large, recent study that estimated that only to % of mrsa infections in three communities in the united states were ca-mrsa infections ( ) when the cdc definition was ap- plied. it is probable that many more than to % of these infections were caused by novel ca-mrsa strains. since about , the distinctions between ca-mrsa and ha-mrsa isolates have become increasingly blurred. as mentioned above, ha-mrsa isolates do circulate in the com- munity, especially among adults. additionally, many reports have demonstrated that mrsa clones bearing sccmec type iv, and particularly usa , the predominant u.s. ca- mrsa pfge type, now cause nosocomial mrsa outbreaks and infections among patients with chronic illnesses (table ). for example, among bloodstream infections in atlanta, ga, in , % of nosocomially transmitted isolates belonged to the usa ca-mrsa genotype ( ), and in a detroit, mi, hospital in to , usa accounted for % ( / ) of tested nosocomial bloodstream infections ( ). a study of table . characteristics associated with ca-mrsa among consecutive mrsa isolates obtained from patients at the university of chicago medical center in to a strain characteristic % of strains with indicated characteristic (n � ) panton-valentine leukocidin gene carriage ............................. . sccmec type iv or v carriage ................................................. . mlst- or mlst- .................................................................... . clindamycin susceptibility .......................................................... . non-multidrug-resistant susceptibility pattern......................... . a adapted from reference with permission of the publisher. © by the infectious diseases society of america. vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ table . reports of ca-mrsa strains likely acquired in the health care setting in to location setting/source yr description reference north america los angeles, ca hospital breast milk transmission of mrsa in neonatal intensive care unit los angeles, ca hospital – sccmec type iv mrsa infections atlanta, ga hospital – prosthetic joint infections caused by usa strains atlanta, ga hospital % of nosocomial mrsa bloodstream infections were usa iowa city, ia hospital – usa in burn trauma unit chicago, il hospital – non-mdr mrsa strains chicago, il hospital – usa strains in kidney transplant recipients ; t. stosor, personal communication denver, co hospitals – usa bacteremia detroit, mi hospital – sccmec type iv and pvl� mrsa in end-stage renal disease patients detroit, mi hospital – usa bloodstream infections detroit, mi hospital sccmec type iv and pvl� mrsa in end-stage renal disease patients detroit, mi hospital – usa infections with onset � h after hospital admission new york city hospital usa infection in nursery new york city hospital non-multidrug-resistant mrsa-caused postpartum infections houston, tx veteran’s hospital – usa bloodstream infections san antonio, tx hospital not stated pneumonia in neonate and colonization of other patients with usa strain united states population-based national estimate – . % of ha-mrsa (by cdc criteria) invasive infections caused by usa strains toronto, ontario, canada maternal-newborn unit, hospital colonization or infection of babies and mothers by usa canadian cities pathogens from icu patients – / mrsa isolates were usa or usa reported from icu surveillance project from medical centers in canada; all usa and usa strains were from cities asia taiwan hospital – sccmec type iv mrsa taiwan hospital – st pvl�, sccmec type iv or vt mrsa accounted for . % of mrsa bloodstream infections australia western australia hospital – outbreak of mrsa infections caused by a strain commonly isolated in the community europe paris, france university hospital – pvl�, sccmec type iv mrsa infections centre region, france hospitals – non-mdr mrsa strains poland hemodialysis patient st sccmec type iv, pvl� colonizing strain ; a. bogut, personal communication birmingham, united kingdom hospital ca-mrsa in neonatal care unit west midlands, united kingdom hospital pvl�, likely st strain caused fatal pneumonia, sepsis, and shock in a health care worker south america são paulo, brazil hospital – sccmec type iv mrsa infection ; a. levin, personal communication uruguay hospitals – usa mrsa strains david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ surgical skin site infections in birmingham, al, from to demonstrated that usa was a common nosocomial pathogen ( ) that first appeared in this setting in ( ). the appearance of ca-mrsa strains in hospitals in the united states is likely responsible for the decreasing non-�- lactam antimicrobial resistance rates noted for mrsa isolates in icus between and ( ). the presence of usa increased among mrsa isolates from a , -bed long-term care facility in san francisco, ca, from . % in to % in ( ). given the complex epidemiology of ca-mrsa strains in health care settings and the circulation of ha-mrsa strains that occurs in the community, establishing a clear delineation between ca-mrsa and ha-mrsa strains has not been pos- sible. cdc investigators have used a third category of mrsa infections, “health care-associated, community-onset” mrsa (haco-mrsa) infection ( ); this category includes cases that would be ha-mrsa infections by history of health care exposure but have onset in the community. this tripartite classification scheme, ha-, ca-, and haco-mrsa, still has limitations because a history of exposure to a health care set- ting does not exclude the possibility of mrsa acquisition and infection in the community ( , ). the complex system of nomenclature now in use for mrsa infections in the united states is based on the historical limi- tation of mrsa infections to the health care system and among those with exposure to it. a revision of the nomencla- ture is warranted; to better reflect the contemporary epidemi- ology of mrsa, a paradigm shift is required. ca-mrsa: an epidemic and its origins scattered case reports describing patients with none of the known health care-associated risk factors for mrsa that had mrsa colonization or a clinical infection were published in the s and the mid- s ( , , , , , , , , ), including several outbreaks caused by different mrsa strain types in remote regions in western australia and then in the northern territory of australia ( ). subse- quently, beginning in , case series of mrsa infection and colonization of patients lacking health care-associated risk fac- tors were reported from six continents, in diverse states, na- tions, and regions (table ). in many countries, mrsa cases among patients without health care risk factors were reported for only small outbreaks or case series, while in the united states, taiwan, canada, and australia, such mrsa infections in patients lacking health care exposure became common. ca-mrsa strains, often re- sponsible for these infections, became endemic pathogens in certain population groups in each of these countries. within the united states, the incidence of invasive ca-mrsa infec- tions has not been geographically homogeneous ( ), and the reasons for this are not understood. the highest prevalence of mrsa colonization recorded (with testing of several anatom- ical sites) was % ( / people tested) in a village in western australia ( ). the impact of globalization has been felt in scandinavia and other parts of europe that have a low preva- lence of mrsa, where many reported cases of ca-mrsa infection are suspected to have been imported from regions where the disease is endemic ( , , , , , , , , , , , , ). in other regions where the prevalence of ca-mrsa isolates has remained low, community-onset mrsa infections are still more likely to be caused by ha-mrsa strains. for example, ha-mrsa strains were responsible for community-onset bac- teremia among military veterans in taipei, taiwan, in to ( ); for community-onset mrsa infections in children in birmingham, united kingdom, in ( ); and for sstis in outpatients in one region of the united kingdom in ( ). few data that describe the epidemiology of mrsa in developing countries are available, but there is concern that ca-mrsa may have devastating consequences if it becomes epidemic in resource-poor regions ( ). an unanswered question is whether ca-mrsa strains are replacing other s. aureus strains causing colonization and in- fection or if they are instead adding to the burden of s. aureus infections and colonization in the united states and elsewhere. evidence to support the latter contention is provided by sev- eral studies. for example, a study demonstrated that the num- ber of sstis treated in u.s. ers rose dramatically in to ; the increase was probably driven by ca-mrsa isolate infections ( ), the predominant cause of sstis in ers ac- cording to a recent study ( ). at a children’s hospital in st. louis, mo, the number of abscesses with mssa isolated in to increased -fold, while during the same period, the number of isolates with mrsa increased -fold. the increase in numbers of mssa infections was not due to an increase in the number of cultures sent, and the usa pfge pattern was found for six mssa isolates tested ( ). in a long-term care facility in san francisco, ca, as usa became the predominant mrsa strain to cause infections, the incidence of mrsa infections doubled from to ( ). in contrast, in other geographic locales, there is little evidence that the overall incidence of invasive s. aureus infec- tions is increasing as rapidly; instead, it appears that as the number of invasive ca-mrsa infections rise, the number of invasive infections caused by ha-mrsa is decreasing. for example, in chicago at cook county hospital, the incidence density, that is, the person-time incidence rate, of bloodstream infections caused by mrsa diagnosed � h after admission in january to june did not differ compared with that in july to december . however, the proportion caused by ca-mrsa strains (defined by a specific antibiotic susceptibility pattern) doubled from % to % ( ). in denver, co, at a city-owned hospital and its affiliated clinics, the number of community-acquired (i.e., a culture obtained from an ed or clinic or within h after a hospital admission) s. aureus sstis did not increase overall, but the percentage caused by mrsa increased from % in the first quarter of to % in the second quarter of (p � . ) ( ). similarly, in the calgary health region of canada, as mrsa became a more common cause of s. aureus bacteremia in to , the total incidence of s. aureus bacteremia did not rise ( ). a similar trend has been demonstrated for the prevalence of asymptomatic mrsa carriage. for example, there is evidence from population-based surveillance in the united states that as the prevalence of mrsa nasal colonization increased, the vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ overall prevalence of any s. aureus nasal colonization de- creased ( ). the emergence of ca-mrsa isolates and associated in- creases in methicillin resistance among s. aureus isolates may be recapitulating the epidemiological pattern that marked the increase in the prevalence of penicillin resistance among s. aureus isolates circulating in the community that had occurred years earlier. resistance to penicillin, mediated by the produc- tion of �-lactamase, was identified among strains of s. aureus almost immediately after the introduction of penicillin in ( ). by the late s more than % of these isolates were penicillin resistant, and rates of penicillin resistance have re- mained in this range since. if the emergence of mrsa is following this pattern ( ), the percentage of community- associated s. aureus infections caused by mrsa strains may continue to rise in the coming decades and may approach %. abundant molecular evidence supports the hypothesis that ca-mrsa clones have arisen in the community by the hori- zontal transfer of sccmec elements and pvl genes, molecular features commonly associated with ca-mrsa isolates as well as perhaps other virulence and resistance factors, to the ge- nomes of mssa strains ( , , , , , , , , ). however, a comparative study of ca-mrsa isolates from sentinel surveillance health care facilities in minnesota, north dakota, and nebraska showed that locally prevalent ca-mrsa and mssa strains were related and that the iden- tified ca-mrsa strains differed from ha-mrsa isolates col- lected at the same facilities ( ). some researchers have pro- posed that an st mssa strain first acquired the pvl genes table . cities, states, regions, and countries with reports of ca-mrsa infections and/or colonization in to location reference(s) location reference(s) africa north america algeria ..................................................... canada............................................................ , , , , , , , , egypt........................................................ , , , , , , , nigeria ..................................................... , , , tunisia ..................................................... mexico ............................................................ united states asia alaska ......................................................... , , , , cambodia ................................................ alabama ..................................................... , , china........................................................ arkansas..................................................... mainland ............................................. california ................................................... hong kong.......................................... , loma linda ........................................... india ......................................................... los angeles ........................................... , , , , , japan........................................................ , , , , , sacramento ............................................ , kuwait...................................................... san diego............................................... , , , malaysia................................................... san francisco ........................................ , , , , , , , , saudi arabia ........................................... , , , , singapore................................................. colorado .................................................... , , south korea............................................ , , , , , connecticut ................................................ , taiwan ..................................................... , , , , , , , , georgia....................................................... , , , , , , , , , , , , , hawaii......................................................... , , , , , , , , , , illinois ......................................................... , , , , , , , , , , iowa ............................................................ australia/oceania kentucky .................................................... , australia .................................................. , , , , , , , , maryland .................................................... , , , , , , , , , , michigan..................................................... , , , , , , , , , , , midwestern rural native , american community ........................... new zealand .......................................... , , minnesota .................................................. , , , , , missouri...................................................... , , , europe nebraska .................................................... austria ..................................................... new england ............................................. , , , , , belgium ................................................... new york................................................... , , , , bulgaria ................................................... north carolina .......................................... , , denmark.................................................. , , , , , ohio ............................................................ finland..................................................... , , , , pennsylvania .............................................. , , , , , france ...................................................... , , , , , , south dakota............................................. germany .................................................. , , tennessee................................................... , , , , , , , , greece ..................................................... , , , , , , , , , texas........................................................... , , , , , , , , ireland ..................................................... , , , , , , , italy .......................................................... , , , , , , , , , , latvia ....................................................... virginia....................................................... , netherlands............................................. , , , , washington and oregon .......................... , , norway..................................................... , west virginia............................................. russia ...................................................... , wisconsin ................................................... spain ........................................................ , sweden..................................................... , , , , south america switzerland .............................................. , , , , , argentina ....................................................... , , united kingdom..................................... , , , , , , brazil .............................................................. , , , , , chile ............................................................... colombia ........................................................ , uruguay.......................................................... , david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ and then the sccmec type iv element to become a pvl� mrsa strain now uncommon in the united states ( ). how- ever, in wisconsin, an st strain isolated in the s carry- ing the sccmec type iv element but lacking pvl genes was identified, possibly representing a precursor to a later pvl� ca-mrsa strain ( ). these observations suggest that the currently prevalent ca-mrsa strains may have developed over several decades of complex evolution. in australia, it was hypothesized that new clones of ca- mrsa arose on several occasions in remote aboriginal com- munities after the introduction sccmec type iv into already prevalent and virulent mssa background strains ( ). in a study of mrsa infections in to in the northern territory, clonal cluster (cc ) strains (a clonal cluster not described for any other region) represented % of s. aureus isolates; mrsa and mssa cc strains were both found among these isolates in a ratio of : ( ), suggesting the local transmission of sccmec to an mssa cc clone with subse- quent clonal expansion. in contrast, in other remote commu- nities in australia, such transfers did not occur in the most prevalent mssa clones colonizing the population ( ). why did ca-mrsa strains appear and succeed? several hypotheses to explain the emergence and entrench- ment of ca-mrsa isolates have been proposed. none of these hypotheses definitively explain the observed epidemio- logical data. they are reviewed briefly here. because the emergence of new ca-mrsa isolates occurred in the late s in tandem with the increasing use of fluoro- quinolones (fqs), some have suggested that the relationship between the phenomena might be more than a coincidence. however, there is no known mechanism to link these phenom- ena. if they are related, the mechanism must be complex be- cause most ca-mrsa isolates in the united states and aus- tralia have been susceptible to fqs. circumstantial evidence for an fq-mrsa association in the health care setting is limited. the increased use of fq has been associated with the elimination of mssa strains from the colonization of the nasal mucosa ( ), which might predispose one to colonization by mrsa strains. other ideas have been proposed to link fq exposure to epidemic ca-mrsa disease. for example, in an in vitro study, ca-mrsa strains obtained from subjects with nasal colonization were exposed to a subinhibitory concentra- tion of fq. in a microarray analysis, this resulted in the in- creased expression of open reading frames of the exposed ca-mrsa isolates, including meca, suggesting that �-lactam resistance may be increased by fq exposure ( ). moreover, the restriction of fq use in the health care setting has been shown to decrease the rate of mrsa isolation ( , ), and fq use has been identified as a risk factor for mrsa infection of hospitalized patients ( ). patients with a nosocomial mrsa infection at one medical center in to were more likely than patients with a nosocomial mssa infection to have been previously treated with the fq levofloxacin (odds ratio [or], . ; % confidence interval [ci], . to . ) ( ). a study in hong kong demonstrated that when mrsa nasal carriers were treated with an fq or a �-lactam, they had a significantly increased mrsa nasal bacterial burden demon- strated by quantitative nasal culture and an increased likeli- hood of mrsa contamination of fomites in their environment ( ), suggesting that fq exposure may be associated with the dissemination of mrsa strains. further circumstantial evi- dence of a relationship between fq use and mrsa infection comes from an administrative health database in the united kingdom, where in to , , adults with an mrsa infection and no known health care exposure had a higher risk (or, . ; % ci, . to . ) of having an fq prescribed within the year prior to their mrsa infection than did , matched controls ( ). other researchers have noted that the introduction of a routine childhood conjugate pneumococcal vaccination (prev- nar) in the united states in february coincided with the increase in the ca-mrsa infection rate and suggested that there may be a causal, and not just a temporal, link between the two phenomena. the united states, which has uniquely experienced epidemic ca-mrsa infections, was the only country recommending the vaccine for routine use for several years. moreover, the recommendation for the routine use of prevnar in in canada may have retrospectively correlated with a rise in ca-mrsa infections there. conversely, ca- mrsa was already commonly reported from australia in jan- uary at the time of the addition of prevnar to the national immunization program schedule for the routine vaccination of children younger than years of age. prevnar was introduced as a recommended routine childhood vaccine in september in the united kingdom, where ca-mrsa has continued to be rare. only occasional case reports of mrsa infection in the community in the united kingdom have been published to date. by august , prevnar was introduced as a routine childhood vaccine in nations, introduced in nations since ( ). if the use of prevnar is related to ca-mrsa incidence, more countries may experience ca-mrsa epidem- ics, but it should be noted that the predominant ca-mrsa genetic background differs in much of the world from those in the united states and canada, and this may affect the associ- ation. biological plausibility for this relationship has been sug- gested by the observation that prevnar vaccinees have de- creased asymptomatic carriage of the seven vaccine serotypes of streptococcus pneumoniae. some researchers have postu- lated that decreased pneumococcal colonization may provide a new ecological niche for colonization with ca-mrsa strains; this is supported by evidence that the cocarriage of s. pneu- moniae and s. aureus was found rarely among healthy children in israel in ( ), a country with few ca-mrsa infections. in the netherlands, a negative correlation was found between colonization by the vaccine serotypes of s. pneumoniae and s. aureus in children who had recurrent otitis media; s. aureus became a more common cause of otitis media in children after prevnar vaccination ( ). one mechanistic hypothesis suggested that s. aureus is inhibited by h o pro- duced by s. pneumoniae strains, an effect demonstrated in vitro ( , ), which theoretically may decrease the likelihood of cocolonization in the nasal mucosa or elsewhere. hypotheti- cally, if prevnar vaccination opened an ecological niche and if ca-mrsa strains were prevalent in the community and more fit than other s. aureus strains, ca-mrsa strains would oc- cupy the niche. brook and gober demonstrated an increase in the recovery vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ of mrsa from acute otitis media with otorrhea. among children in suburban washington, dc, in to , prior to the licensure of prevnar, / bacterial isolates recovered were mrsa isolates, compared with / ( %) mrsa isolates recovered in to (p � . ). during the second period, % of the patients had received prevnar ( ). because otitis media is an infection of the middle ear caused by pha- ryngeal flora, this increase in mrsa otorrhea may reflect an increased pharyngeal colonization with mrsa with the elim- ination of vaccine serotypes of s. pneumoniae. controversy still surrounds the notion that prevnar is asso- ciated with increasing mrsa colonization in a given popula- tion; some authors have not found evidence to support the contention that cocolonization with s. aureus and s. pneu- moniae is uncommon ( , ). one study showed no differ- ence in the rates of s. aureus nasal carriage in children with otitis media who had received prevnar and those who had not ( ). another study demonstrated no increase in the preva- lence of s. aureus (neither mssa nor mrsa) nasal coloniza- tion in a large group of children seen in massachusetts primary care offices from november to april , before the widespread use of prevnar, compared with the prevalence from october to april , after its introduction. however, that study was limited in that only children months to years of age were included, enrichment broth was not used to en- hance the detection of s. aureus, and new england was among the last regions of the united states to report widespread ca-mrsa infections ( ). in a similar vein, group b streptococcus and ca-mrsa isolates may compete for colonization in the vagina. in a study of vaginal colonization among pregnant women in new york city, ny, only / ( . %) patients vaginally or rectally colo- nized with ca-mrsa (i.e., the isolates carried the sccmec type iv or v element) were also colonized with group b strep- tococcus; in contrast, / ( %) group b streptococcus-col- onized women had mssa vaginal colonization, possibly sug- gesting increased competitive fitness among ca-mrsa strains relative to that of mssa with respect to group b streptococcal colonization ( ). sccmec elements and ca-mrsa nearly all mrsa strains contain the sccmec element, which is uniformly integrated into a specific s. aureus chromo- somal site known as orfx. sccmec, which was likely acquired from a coagulase-negative staphylococcus species ( , ), carries the meca gene, which encodes penicillin binding pro- tein a (pbp a), a cell wall transpeptidase, which, in conjunc- tion with native pbp , allows continued cell wall synthesis in the presence of �-lactams ( ). in addition, sccmec ele- ments variably carry the mecr and meci genes, which regulate the expression of meca, with increased meca translation in- duced by �-lactam antibiotic exposure. the meca gene and its regulatory elements, taken together, comprise the mec com- plex ( ). different complex types have evolved, giving rise to mrsa strains with the class b mec complex, which express pbp a constitutively, and strains with the class a mec complex, which express pbp a only when induced by �-lactams. two additional mec complexes, called classes c and d, have also been identified ( ), although the class d complex has been found only in coagulase-negative staphylococcus species. main types of sccmec elements to date, nine types of sccmec (types i to viii and vt) have been defined, which can be distinguished by the type of ccr gene complex that mediates the site-specific excision and in- sertion of the sccmec cassette out of or into the bacterial genome and the class of mec complex that they bear ( , , ) (fig. ). the large sccmec types i to iii are present in ha-mrsa strains and were likely transferred to s. aureus from a commensal staphylococcal species on a few occasions ( ). among u.s. ha-mrsa isolates, sccmec type ii ele- ments are usually carried, whereas sccmec type iii elements are more commonly identified in ha-mrsa isolates in other countries. the smaller sccmec types iv and v, however, are believed to have been transferred to methicillin-susceptible backgrounds frequently, with the resultant emergence of novel, fit mrsa strains bearing the type iv or v elements ( , , ). one study suggested that the type iv sccmec element has been transferred to an mssa strain � times ( ). although it was initially thought that sccmec type iv first integrated into pathogenic s. aureus backgrounds in the mid- s, it is now known that this integration first occurred much earlier. for example, in taiwan, sccmec type iv elements were identified in pvl-negative st mrsa isolates from ( ). the type iv sccmec element has been strongly associated with strains causing mrsa infections in patients with no ha- mrsa risk factors ( , ) in the united states and else- where. the type ii and iii sccmec elements include sites, called by some the junkyard regions, for the insertion of genes conferring non-�-lactam resistance phenotypes to s. aureus strains and, therefore, are more commonly associated with mdr phenotypes ( , ). the presence of the sccmec type iv element, which lacks genes conferring non-�-lactam antimicrobial resistance, may account for the decreased likeli- hood that ca-mrsa strains are mdr. several subtypes of sccmec type iv that vary depending on the typing system used have been described. an international committee of experts in formulated a consensus nomenclature for sccmec types ( ). sccmec types iv and v in ca-mrsa isolates children may be at a higher risk of infection by sccmec type iv-bearing isolates than adults. in a study of mrsa infections at the university of chicago hospitals in to , children were more likely than adults to be infected by strains that carried sccmec type iv and the pvl genes and by strains that were susceptible to many non-�-lactam antibiotics ( , ). although no clinical data were available to assess the rate of community-onset infections, surveillance at a south korean hospital in to demonstrated that children were more likely to be infected by sccmec type iv-bearing strains ( % st strains bearing sccmec type iv and . % st strains bearing sccmec type ii), while adults were more likely to be infected by sccmec type ii-bearing strains ( % st and % st strains). pediatric strains were also more likely to be david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ fig. . classification scheme for sccmec type by ccr complex and mec complex type. (adapted from reference .) o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ susceptible to gentamicin, clindamycin, ciprofloxacin, and ri- fampin ( ). these studies suggested that children are differ- entially exposed or differentially susceptible to sccmec type iv-bearing strains or perhaps reflect more common exposure to the health care setting among adults. the reasons are not known, and this area requires further research. sccmec type v is similar to type iv in that it is small and presumably similarly mobile. it has been found in ca-mrsa isolates predominantly in australia ( ) and taiwan ( , , ). sccmec type v is rare in europe and the united states. however, in an st strain of pvl� mrsa with sccmec type v was reported from greece ( , ) and elsewhere ( ). more research is needed to determine why sccmec type iv is associated with prevalent ca-mrsa strains, including usa , and why strains bearing sccmec type v remain limited largely to asia and are relatively un- common. because sccmec types iv and v appear to be highly mo- bile, the dissemination of mrsa in a community population has probably been accomplished most commonly by transfers of mrsa strains from carriers to other individuals and also by the transfer of the smaller sccmec elements that can be passed from mrsa strains to mssa strains or even from a coagulase-negative staphylococcal strain to an mssa strain ( ). all these processes are probably facilitated in the pres- ence of antibiotic receipt ( , ). in the countries of northern europe that have accurate pop- ulation-based reporting of mrsa infections, there has been an increase in numbers of reports of polyclonal ca-mrsa colo- nization and infection by sccmec type iv-bearing, pvl� mrsa strains. this presumably resulted from the easy and rapid transmissibility of the sccmec type iv element from mrsa backgrounds to methicillin-susceptible s. aureus back- grounds. for example, in denmark, the first st , pvl�, sccmec type iv isolate was identified in , although by , only cases were recorded ( ). among the few known mrsa isolates from infections of outpatients in den- mark in , % ( / isolates) carried sccmec type iv, and % were pvl� ( ). another study from copenhagen, denmark, demonstrated the initial spread of pvl� sccmec type iv and v strains and showed that many genetic back- ground types bearing these sccmec elements were present there in to ( ). sccmec type iv became the most common sccmec type carried by mrsa strains isolated from inpatients at a hospital in basel, switzerland. sccmec type iv carriage increased from . % among mrsa strains isolated in to . % in . most of the sccmec type iv-bearing mrsa strains were mdr and were isolated from patients who had ca- or ha-mrsa infections by the cdc definition ( ). virulence factors in ca-mrsa a number of putative virulence factors have been identified by experimental and epidemiological studies of ca-mrsa strains, particularly in usa (fig. ). they are reviewed here. pvl and ca-mrsa pvl is a two-component s. aureus pore-forming protein encoded by the lukf-pv and luks-pv genes. it was first de- scribed in by van de velde ( ) and was associated with fig. . hypothetical virulence factors in usa and other ca-mrsa strains. for details, see the text. david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ sstis in by panton et al. ( ). the genes encoding pvl, which can spread from strain to strain by bacteriophages, were previously believed to be present in fewer than % of un- selected clinical s. aureus isolates ( , ) before the advent of ca-mrsa strains in the mid- s, although the genes were transiently found in a circulating st clone in japan in to ( ). pvl and ca-mrsa infections. in the united states, after the mid- s, carriage of the pvl genes has been closely linked to infections caused by ca-mrsa strains in numerous epidemiological studies. approximately to % of ca- mrsa strains (by various definitions) have been shown to carry pvl genes. for example, in , a large study from minnesota found that % of patients with infections caused by ca-mrsa isolates (by the cdc case definition) were pvl�, but only % of ha-mrsa isolates were pvl� ( ). among military recruits in texas in , % of mrsa strains colonizing the nares of recruits or causing in- fections among them were pvl� ( ). pvl genes were found in . % of banked mrsa isolates obtained in to from four clinical sites in the san francisco area. among mrsa isolates from detainees in the san francisco county jail, more than % were pvl�; of mrsa isolates from a clinic specializing in the treatment of sstis (all collected in ), % were pvl�. all pvl� mrsa strains also carried the sccmec type iv element ( ). while pvl has been strongly linked epidemiologically to prevalent ca-mrsa strains, it is not known with certainty how they contribute to their fitness and/or virulence or if they are merely a marker for other fitness or virulence determi- nants. pvl� strains carrying sccmec type iv, v, or vt ( , ) with varied background genotypes in many geographic settings have now been identified, although the chromosomal site of pvl gene integration lacks any known genetic linkage to the insertion site of sccmec elements. moreover, no other s. aureus toxin genes have been associated as strongly with ca-mrsa strains as pvl ( , , ). pvl genes are rarely found in mrsa strains carrying sccmec types i, ii, and iii. pvl genes may be more common among s. aureus isolates causing clinically apparent infection than among isolates caus- ing asymptomatic colonization, although there are conflicting data. for example, among sccmec type iv-bearing mrsa strains colonizing new york state prison detainees in , ( . %) were pvl�. s. aureus strains causing infection, how- ever, were more likely to be pvl� than those causing asymp- tomatic colonization ( / strains [ %] versus / strains [ . %]; p � . ) ( ). in contrast, among clinical usa mrsa isolates (see below) in the calgary health region in canada in to , pvl� and pvl-negative strains were as likely to cause mild or severe disease, and both were equally likely to asymptomatically colonize ( ). in the united states, pvl genes have been almost univer- sally detected among ca-mrsa strains causing sstis and s. aureus invasive diseases such as community-acquired necrotiz- ing pneumonia ( , , , , , , , ), severe sepsis, and other sometimes fatal infections ( , , , , , , , , , ). among patients with s. aureus pneu- monia, higher mortality and an increased likelihood of sepsis, hemoptysis, and pleural effusion were documented for cases caused by a pvl� strain ( ). in australia, the first reports of community-onset mrsa infections in were caused by strains that lacked pvl genes. subsequently, however, a polyclonal surge of largely pvl� mrsa infections occurred among previously healthy, young adults and children; each newly described pvl� sccmec type iv-bearing community strain identified in that country had a distinct geographic distribution ( ). further- more, the clinical syndromes among sstis in australia caused by pvl� mrsa strains differed from syndromes caused by pvl- negative strains. for example, in queensland, australia, in to , % of sstis caused by pvl� s. aureus strains were designated “furunculosis,” compared with only % of sstis caused by pvl-negative strains; the remainder of the sstis were described as “cellulitis” ( % versus %, respectively) or “sur- gical-wound infection” ( % versus %, respectively). patients with pvl� strains were younger, less likely to have sstis as a complication of surgery, and more likely to have been hospital- ized for the management of sstis ( ). studies from many countries in europe also documented the emergence of pvl� sccmec type iv-bearing ca-mrsa strains in multiple s. aureus backgrounds, although ca-mrsa infections occur far less commonly there than in the united states (table ). for example, only . % ( / ) of isolates from ca-mrsa patients (by the cdc case definition) sub- mitted to an irish reference laboratory from to were pvl� ( ) (table ). in asia, the reported occurrence of mrsa infections that have onset in the community and the rate of pvl gene carriage have varied by country. in taiwan, pvl� ca-mrsa strains of a single background type commonly cause infections. pvl genes were identified in all isolates in one study of ca- mrsa infections in children, the majority of whom had sstis ( ). of mrsa isolates colonizing the nares of healthy taiwanese children in to , % were pvl�; all pvl� mrsa strains had one of two pfge types, and all tested isolates were st isolates or single-locus variants of st ( ). in south korea and china, pvl� strains remain rare among reported community-onset mrsa infections. only of mrsa isolates from patients in south korea with ca-mrsa infections (by cdc criteria) in to was pvl� ( ). among , healthy people in seoul, south korea, in , the mrsa colonization prevalence was . %; % of mrsa isolates carried sccmec type iv. of the mrsa isolates identified, % ( ) were pvl�; these were polyclonal, rep- resenting four sts, st , st , st , and st ( ). in wen- zhou, china, of s. aureus isolates from clinical specimens at a single medical center in to , ( . %) were pvl�; these belonged to six mlsts. of the pvl� s. aureus isolates, were mrsa isolates. six of the pvl� s. aureus isolates, including of mrsa isolates, were from “commu- nity-acquired” infections, although the criteria for this desig- nation were not provided ( ). at pediatric hospitals in five chinese cities in to , mrsa isolates were identi- fied among , clinical s. aureus isolates. of the mrsa isolates, % ( / ) were pvl�, and these included the st , vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ t a b l e . c as e se ri es an d su rv ei lla nc e st u di es of p v l � sc c m ec ty pe iv - or v -b ea ri ng co m m u ni ty m r sa in fe ct io ns re po rt ed in e u ro pe in di ca ti ng th e ge ne ti c ba ck gr ou nd s id en ti fi ed c ou nt ry an d/ or ci ty c ol le ct io n de ta ils y r n o. of m r sa is ol at es te st ed n o. (% ) of p v l � is ol at es m ol ec u la r ty pi ng re su lt s fo r p v l � is ol at es r ef er en ce f in la nd c a -m r sa fr om na ti on al re po rt in g sy st em – ( ) st -i v /t , st - iv /t , st -i v /t , st - iv /t , m is ce lla ne ou s ty pe s ir el an d m r sa fr om na ti on al re fe re nc e co lle ct io n – , ( . )a st , st , st , st , st , st d en m ar k sa m pl e of is ol at es fr om c a -m r sa pa ti en ts b in d en m ar k co lle ct ed by th e st at en s se ru m in st it u t – ( . ) m l st cl on al cl u st er s c c , c c , c c , c c , c c , c c , c c , c c , c c / , c c , m is ce lla ne ou s c c s l yo n, f ra nc e c a -m r sa an d c a -m ss a in fe ct io ns ; ca se se ri es – sh ar ed p f g e ty pe ; di ff er ed by ba nd f ré ju s- sa in t r ap ha ël , f ra nc e c om m u ni ty -o ns et m r sa di se as e at ho sp it al – c c ( . ) sa m e p f g e ty pe as do m in an t st ra in in re fe re nc e ; di ff er ed by ba nd ; al l ag r ty pe g en ev a, sw it ze rl an d ss t i pa ti en ts w it h no he al th ca re ex po su re fr om pr iv at e ph ys ic ia ns ’ of fi ce s in ci ty ( ) p f g e pu ls ot yp es g en ev a, sw it ze rl an d c a -m r sa is ol at es (i .e ., fr om pa ti en ts w it h no ho sp it al iz at io n in pa st m o an d no ns ta nd ar d an ti bi og ra m ) fr om ho sp it al – ( . ) st , st , st , st , st , st , st l on do n, e ng la nd c ip ro fl ox ac in -s u sc ep ti bl e m r sa st ra in s fr om ho sp it al s – ( . ) sp a ty pe s, st , st , st , st e ng la nd an d w al es s . au re u s is ol at es fr om cl in ic al in fe ct io ns ; re fe re nc e co lle ct io n – d ( . ); w er e m r sa m r sa is ol at es , st (n � ) , st (n � ) , st (n � ) , st (n � ) e ng la nd an d w al es c ip ro fl ox ac in -s u sc ep ti bl e st ra in s is ol at ed fr om bo ils , ab sc es se s, an d pn eu m on ia fr om ce nt er s ac ro ss e ng la nd an d w al es – , ( . ) c c (n � ), c c (n � ), c c (n � ), c c (n � ), c c (n � ), c c (n � ) , c c (n � ), st (n � ) a u st ri a l ar ge re fe re nc e co lle ct io n – , ( . ) st , st ( % ), st , st , st , st ( % ), st v ie nn a, a u st ri a m r sa is ol at es ob ta in ed at ho sp it al fr om pa ti en ts w it h co lo ni za ti on or in fe ct io n re si st an t on ly to � -l ac ta m s or � -l ac ta m s an d fu si di c ac id – ( ) sp a ty pe s (t , t , t , t , t , t , t , t , t ) m ad ri d, sp ai n p v l � m r sa in fe ct io ns in an em er ge nc y de pa rt m en t ( ss t is , ba ct er em ia , as ym pt om at ic co lo ni za ti on , an d ot it is m ed ia ) – st , st , st d re sd en , g er m an y ss t is w it h p v l � st ra in s – st , st ; s. m on ec ke , pe rs on al co m m u ni ca ti on ö re br o c ou nt y, sw ed en c lin ic al p v l � is ol at es ( ss t is , jo in t, pl eu ra l ef fu si on ) – st , st , st , st , st , st a a ll p v l � is ol at es w er e fr om to . b c a -m r sa in fe ct io ns ha d th ei r on se t in th e co m m u ni ty or w er e cu lt u re d � h af te r ho sp it al ad m is si on , an d th e pa ti en ts ha d no st ay in a ho sp it al or lo ng -t er m ca re fa ci lit y fo r m on th s. c si x pa ti en ts w it h ss t i an d no he al th ca re ex po su re ha d in fe ct io ns w it h p v l � m r sa st ra in s am on g pa ti en ts w it h co m m u ni ty -o ns et m r sa in fe ct io ns . d t hi s is th e nu m be r of s . au re u s is ol at es ; th e au th or s di d no t re po rt ho w m an y w er e m r sa is ol at es . david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ st , st , st , and st genetic backgrounds. among the pvl� mrsa strains, ( %) were ca-mrsa infec- tions according to the cdc case definition ( ). the prevalence of the pvl genes was less common among mssa isolates than among mrsa isolates from infections and colonization in several studies. for example, in a case-control study in rural alaska in following an outbreak of mrsa sstis, no mssa isolates causing colonization (n � ) or clinical infection (n � ) carried pvl genes, compared with % ( / ) of mrsa isolates causing colonization or infec- tion ( ). among s. aureus isolates causing musculoskeletal infections in children in houston, tx, in to , causative mrsa isolates were more likely to carry pvl genes than were causative mssa isolates ( / versus / ; p � . ) ( ). pvl� mssa strains can cause serious infec- tions ( , , , , ), although such outbreaks appear to be relatively rare. role of pvl in the pathogenesis of mrsa infections. pvl is a leukocidin that can lyse the cell membrane of human neu- trophils, although its importance in pathogenesis is controver- sial. recent evidence suggests that pvl may also inactivate mitochondria ( ) and culminate in apoptosis. in animal models, pvl has been shown to be dermonecrotic ( , ), perhaps explaining the pathobiology of the characteristic skin lesions associated with ca-mrsa sstis. these lesions often resemble an injury produced by a spider bite ( , ), al- though common house spiders were not found to be carriers of ca-mrsa ( ), and a correlation between the geographic distribution of recluse spiders and these typical lesions associ- ated with mrsa infection has been lacking. recently, the importance of pvl in the pathogenesis of sstis and necrotizing pneumonia has come into question. voyich et al. found that the presence or absence of pvl genes in mrsa strains did not affect strain virulence in mouse mod- els of sepsis and ssti, and their presence did not decrease neutrophil survival in in vitro assays ( ). wardenburg et al. found that the presence or absence of pvl did not affect the mortality rate of s. aureus pneumonia in a mouse model. also, the absence of the pvl gene locus in deletion mutants did not alter the cytotoxic effect of wild-type usa (lac) and usa (mw ) strains in vitro in human alveolar epithelial cells ( ). that same group also found no difference in pneu- monia and skin abscess rodent models after inoculation with a usa strain or its isogenic pvl knockout ( ). in contrast, labandeira-rey et al. demonstrated that both the purified pvl protein and an rn derivative with the pvl genes overexpressed on an introduced phage caused necrotizing pneumonia in a mouse model ( ). in a model of rat pneu- monia, in contrast, usa and usa clones and their respective isogenic pvl knockout strains did not differ in vir- ulence ( ). diep et al. compared wild-type and isogenic pvl knockout strains of two usa isolates and demonstrated no differences in the isogenic mutants in their proteomes or in their global gene expression patterns irrespective of the pres- ence of pvl genes ( ). that same group challenged rabbits intravenously with a : mixture of a wild-type usa strain and an isogenic pvl knockout mutant and demonstrated that and h, but not h, later, the pvl-containing wild-type strain was present in a greater density in homogenized kidneys of sacrificed rabbits, suggesting that pvl may provide an early survival benefit to mrsa strains in this model ( ). tseng et al. found that pvl was responsible for increased tissue damage in a myositis model in young, but not older, mice by comparing an mrsa isolate obtained from a patient with necrotizing fasciitis with its isogenic pvl knockout mutant ( ). those authors hypothesized that the younger mice had a more robust neutrophil response to pvl, resulting in more severe injury to muscle ( ). hongo et al. found that pvl toxin did not produce a lysis of neutrophils from balb/c mice, but the lytic activities against human neutrophils of supernatants from usa and usa strains were abrogated in the presence of monoclonal anti- pvl antibodies ( ). löffler et al. found that pvl did not lyse neutrophils from monkeys or mice, but it did lyse rabbit and human neutrophils ( ). these findings support the impor- tance of pvl in the pathogenesis of ca-mrsa infections in humans, while mouse models may not be appropriate to assess the contribution of pvl. the conflicting results for the role of pvl in the pathogen- esis of ca-mrsa infections may relate to the amount of pvl produced by individual strains. for example, varshney et al. demonstrated that in a variety of clinical mrsa and mssa strains, pvl production varied. when used in a murine skin infection model, strains with more pvl production produced larger skin lesions and higher bacterial burdens in the lesions at days ( ). the pvl gene dna sequences have allelic variation that may help to explain the conflicting results seen in animal stud- ies. among s. aureus strains that underwent pvl gene sequencing, nucleotide polymorphisms were found, but only resulted in an amino acid substitution. the strains included representatives of the ca-mrsa st , usa , and usa clones as well as a phage type / strain (st ). the pvl gene sequence in the phage type / strain was hypothesized to contain the progenitor of the pvl gene sequences carried by the other isolates in the collection ( ). the pvl luksf-pv gene sequences found in an international collection of isolates had two predominant variants; the two variants differed by a single amino acid substitution. the r variant was found only in usa and usa mrsa isolates from the united states, while the h variant was common in mssa strains obtained elsewhere ( ). in a separate study of a different group of s. aureus isolates, the r variant was found in usa and usa strains and in a cc clinical isolate from australia; in contrast, the h variant was present in mssa and mrsa strains from around the world and nearly all pvl� ca-mrsa clones outside the united states ( ). it is possi- ble that the polymorphisms distinguishing the r and h variants may result in changes in the function of the pvl protein, potentially explaining the apparently contradictory results demonstrated in animal studies of the virulence of pvl� mrsa strains ( , ). the importance of these polymor- phisms, if any, requires further research ( ). other virulence factors in ca-mrsa strains other candidate genes have been proposed to be important virulence factors driving the dominance of usa and other ca-mrsa clones in the community ( ). it is estimated that % of the genome of s. aureus varies among strains, and these vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ variable regions may include structural genes and regulatory apparatus that may influence fitness, pathogenicity, and viru- lence ( ). several examples that have received recent atten- tion are discussed in this section. acme. the arginine catabolic mobile element (acme) is a . -kb dna element that contains expressed reading frames and is present in many usa strains. it is integrated into orfx, the same site on the s. aureus chromosome into which sccmec integrates, and it is frequently found in coagulase- negative staphylococcal species ( ). it has been postulated that acme may play a role in pathogenesis by conferring an enhanced ability of ca-mrsa strains to colonize the skin of healthy people and, thus, more easily disseminate in the com- munity, although no experimental data exist to substantiate this hypothesis. acme contains the structural gene arca, en- coding arginine deiminase, which in streptococcus pyogenes inhibits the proliferation of peripheral blood monocytes and enhances bacterial survival at a low ph, such as that found on normal skin, in intracellular compartments of phagocytic cells ( ), and in abscess cavities. in addition, arginine deiminase may deplete l-arginine, which is a substrate for nitric oxide production; nitric oxide is a toxic metabolite generated by human macrophages and other leukocytes to control microbial pathogens. while arca is found in nearly all staphylococcal strains, the arca gene contained in acme has a distinctive nucleotide sequence. the consequences of carriage of the dis- tinct arca gene are unknown ( ). other open reading frames within acme may also be relevant virulence factors; further research is necessary to investigate this possibility. of s. aureus isolates from a reference collection, arca was identified only in usa mrsa backgrounds containing sccmec type iva. it was not found in other successful ca- mrsa background types (e.g., usa or st strains). thus, like pvl, acme is not necessary for the broad dissem- ination of an mrsa clone ( ). diep et al. found that all but of , usa isolates tested from a reference collection carried the acme element ( ), although montgomery et al. found that / ( %) tested usa isolates lacked arca, a proxy marker for the acme element ( ). in an assay for competitive fitness, usa had superior fitness, as mea- sured by the differential bacterial burden in tissues at au- topsy compared with an isogenic mutant that had acme and the sccmec element deleted. those authors concluded that the absence of the acme element significantly de- creased the in vivo fitness of usa ; acme may therefore be central to the pathogenesis of usa infections ( ). in contrast, montgomery et al. found no difference between the virulence of usa strains and that of an isogenic acme knockout in a rat model of necrotizing pneumonia or skin infection; furthermore, no difference was found in the expressions of global regulators of virulence determi- nants in these two strains ( ). the �-type psms. the �-type phenol-soluble modulins (psms) and �-type psms, two groups of cytolytic peptides that are produced in higher concentrations in vitro by two u.s. ca-mrsa clones, usa (mw ) and usa (lac), than by ha-mrsa strains tested have recently received attention as candidate virulence factors. psms are also found in coagu- lase-negative staphylococcus species ( ). delta-toxin is pro- duced by s. aureus and is similar in structure to �-type psms. isogenic clones of usa mw and usa lac were created, in which the genetic loci psm� and psm� were de- leted and the start codon of the gene encoding delta-toxin (hld) was altered, abolishing the production of psms and delta-toxin in the mutants. these two deletion mutants were less lethal in a mouse model of bacteremia and less likely to cause skin lesions in infected mice than the corresponding wild-type strains. in vitro studies demonstrated that synthetic psm-acti- vated human neutrophils and that certain psms, especially psm� , caused neutrophil lysis in vitro. the in vitro lytic ac- tivities of the mw and lac strains were increased compared with those of the corresponding mutant strains. this activity was restored by complementation using a plasmid expressing all �-type psms and partially complemented by a plasmid expressing psm� alone. strains lacking delta-toxin did not demonstrate any change in their abilities to lyse human neu- trophils. these experiments suggested that psms may be in part responsible for the virulence of successful ca-mrsa clones ( , ). hongo et al. demonstrated that psm� , while it did not lyse human neutrophils at low concentrations, may be a cofactor that enhances the ability of pvl to lyse human neutrophils ( ). protein a. the species signature gene spa encodes protein a, which is expressed on the surface of nearly all s. aureus strains. protein a contributes to the prevention of opsoniza- tion and subsequent phagocytosis by ineffectually binding the fc region of igg ( , ). it also initiates a proinflammatory cascade in the airway by activating tumor necrosis factor re- ceptor (tnfr ) ( ) and b cells in concert with other ligands ( ). protein a was also shown to enhance the activity of alpha-toxin in a murine model of skin infection ( ). mrsa strains with certain spa types have a decreased ability to invade human cells in vitro ( ), suggesting an association with certain spa types and virulence. this observation has not been confirmed by experiments using isogenic bacterial mu- tants with different spa types, and further research is needed to assess the importance of protein a as a virulence factor in ca-mrsa strains. other candidate virulence factors and mechanisms. it has been proposed that mrsa strains lacking the pls gene, coding for the surface protein pls, which decreases adhesion to human cell ligands and invasiveness, have decreased pathogenicity ( ), but further research is needed to determine if this effect has clinical importance. one group demonstrated with a mouse abscess model that the efflux pump norb, responsible for resistance to fluoro- quinolones and other antimicrobial compounds, may provide a fitness advantage to wild-type mw (usa ) strains ( ). recently, montgomery et al. demonstrated increased levels of transcription of the pvl and alpha-toxin (hla) genes and of the global regulators agr, sara, and saers in three usa mrsa strains compared with two usa strains. agr, sara, and saers regulate the increased expression of many toxin and other proteins associated with virulence ( ). this increased transcription was correlated with increased virulence in several rodent models of ca-mrsa pneumonia. these observations suggested that a difference in the quantitative expression of key virulence genes rather than their presence alone might account for the increased virulence or fitness of usa . in further support of this, in a global assessment of exoprotein abun- david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ dance, burlak et al. found that virulence factors, including cna and hla, had increased production in a usa (lac) strain compared with a usa (mw ) strain. these viru- lence factors included proteases, molecules involved in adhe- sion to host cells, and toxins; the pvl protein was not detected in the supernatant from either strain ( ). non-�-lactam antibiotic susceptibility and ca-mrsa ca-mrsa isolates have typically been susceptible to most non-�-lactam antimicrobial drugs ( , ), including several orally available agents. this enables clinicians to have a num- ber of options when selecting empiric treatments of putative ca-mrsa infections. ca-mrsa isolates are usually suscep- tible to clindamycin in the united states ( , ), gentamicin in australia ( ), and ciprofloxacin in england ( , , ). indeed, susceptibility to more than two non-�-lactam antimicrobials ( ) has been used as a proxy defining criterion to identify ca-mrsa. the treatment of ca-mrsa infections is discussed below; here we focus on the generally broad sus- ceptibility and trends for increasing resistance among ca- mrsa strains ( , ). mupirocin resistance mupirocin, a topical antimicrobial, is often used as an intra- nasal agent in mrsa decolonization protocols and for the topical therapy of impetigo. it acts by binding bacterial isole- ucyl trna synthetase, thereby inhibiting protein synthesis. low-level mupirocin resistance results from point mutations in the iles gene, while high-level resistance is associated with the presence of the mupa gene, which is carried on a plasmid and codes for a mutant isoleucyl trna synthetase that does not bind mupirocin ( ). few centers routinely test mrsa isolates for susceptibility to mupirocin, but there is evidence that when it is used in decolonization regimens, resistance emerges rapidly ( ). among , patients admitted to a medical center in chi- cago, patients had a positive pcr assay and a positive culture for nasal mrsa. of the mrsa isolates, ( . %) had low-level mupirocin resistance, and ( . %) had high- level resistance ( ), although the use of mupirocin at the center was not quantified. similarly, among , mrsa iso- lates from canadian hospitals, high-level mupirocin resis- tance increased from . % in to to . % in to . mupirocin resistance mediated by the mupa gene was more common for isolates obtained from aboriginal popula- tions than from others, from those with asymptomatic mrsa colonization than from those with a mrsa infection, and from those with ca-mrsa infection (as defined by a lack of risk factors for exposure to health care facilities) than from those with ha-mrsa infection ( ); the use of mupirocin was not quantified for these hospitals. in other centers, mupirocin use was quantified and corre- lated with increasing rates of resistance among mrsa isolates. in a study of mrsa nasal colonization among icu patients in st. louis in to , where mupirocin was routinely ad- ministered to carriers for a mean of . days/ , patient- days, resistance was common: . % of isolates were re- sistant to mupirocin (mic � ). of these, . % had low-level resistance and . % had high-level resistance ( ). at three hospitals in suburban chicago, a mupirocin-based decoloniza- tion protocol was used routinely for years for any patient found by active screening at admission to have nasal coloniza- tion with mrsa. in august to , , mrsa isolates were obtained. mupirocin resistance was detected for . %, . %, and . % of the isolates during the first, second, and third years of the program, respectively ( ). in contrast, not all centers have noted frequent mupirocin resistance among mrsa isolates. among clinical mrsa isolates obtained in to at the madigan army med- ical center in fort lewis, wa, only . % had high-level resis- tance to mupirocin (mic � , �g/ml) and . % had inter- mediate resistance (mic, to �g/ml) by etest. those authors found no trend toward an increased prevalence of resistance over time despite the extensive usage of mupirocin- based topical creams in the western regional command ( , g prescribed between march and february ) ( ). further studies are necessary to define the impact of mupirocin use on the development of resistance. clindamycin resistance increasing non-�-lactam antimicrobial resistance among ca-mrsa clones, particularly to clindamycin, may complicate efforts to manage infections in the community. a study in boston and san francisco showed the emergence of a multi- drug-resistant strain of mrsa carrying plasmid pusa , pre- dominantly among isolates from men who have sex with men (msm) in the community. this plasmid codes for resistance to clindamycin and mupirocin ( ) and may be responsible for a high rate of failure in mupirocin decolonization attempts among msm patients in new york city ( ). at a health center in boston serving a patient population in which � % of the patients reported being msm, among first-patient mrsa isolates obtained in to , % belonged to one of two subclones of usa . among the isolates that had antimicrobial susceptibility testing, ( %) were resistant to erythromycin, ( %) were resistant to levofloxacin, ( %) were resistant to clindamycin, and ( %) were resis- tant to tetracycline. twelve of the mdr isolates were tested, and all carried the mupa gene. all were susceptible to doxy- cycline and tmp-smx ( ). similarly, in a study of ca- mrsa sstis among msm patients in new york, only % were susceptible to clindamycin and % were susceptible to ciprofloxacin ( ). of mrsa isolates obtained from the axillae or nares of otherwise healthy hiv-infected patients in new york city in to , / ( %) carried the mupa gene, and / of these strains had constitutive resistance to clindamycin; all isolates were usa strains. ciprofloxacin resistance was found for / usa colonization isolates in the study ( ). reduced susceptibility to vancomycin and daptomycin rare cases of resistance of usa strains to intravenous non-�-lactam antibiotics have been reported. for example, a usa mrsa isolate that had low-level resistance to vanco- mycin and reduced susceptibility to daptomycin was isolated vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ from a patient in san francisco who died of mrsa lumbar discitis ( ). molecular epidemiology of ca-mrsa usa strains in the s, several s. aureus genetic backgrounds were responsible for initiating the ca-mrsa epidemic, but by the first years of the st century ( , ), one well-characterized genetic background, usa , emerged as the most prevalent strain in the contiguous states in the united states ( , , , , , ). elsewhere in the world, including rural southwestern alaska ( ), other pvl� genetic mrsa back- grounds have predominated (table ). usa has been iso- lated from patients on all continents except antarctica, but its role as the dominant genetic background of ca-mrsa has not been duplicated outside the united states. relevant characteristics of usa include the carriage of sccmec type iv, pvl genes, and, in most strains, the acme element. usa is classified as st by mlst and is usually classified as t by spa typing. it is frequently susceptible to many non-�-lactam antimicrobials. usa is not the sole st , spa type t , and sccmec type iv-bearing mrsa strain ( ), but other genetic backgrounds have not been as widely distributed. usa became the dominant ca-mrsa strains in the united states in a remarkably brief period of time. its pre- dominance has been documented in a number of disparate settings. for example, in a population-based study of mrsa infections in san francisco in to , . % of commu- nity-onset mrsa infections were caused by usa clones ( ). at the baltimore, md, veterans affairs medical center in to , the incidence of mrsa infections increased among patients with no history of mrsa colonization or in- fection from . ( infections) to . ( infections) per , outpatient visits; usa caused no mrsa sstis in but caused % of mrsa sstis in . in this -year period the proportion of ssti cultures that yielded mrsa increased from % to %. this increase was accompanied by an in- crease in the number of visits for sstis from to per , outpatient visits, an increase that was accounted for by the rising number of usa mrsa infections ( ). usa was responsible for an estimated % of invasive mrsa dis- ease in the united states in ( ) and for . % in to ( ). in eds in u.s. cities in august , usa was identified among % of mrsa isolates obtained from ssti cultures ( ). in chicago, st strains, corresponding to usa , made up . % of mrsa strains from individual inpatients and outpatients in to at a large tertiary care medical center and . % of all mrsa isolates obtained from patients seen in the ed but not admitted ( ). usa caused % ( / ) of mrsa bloodstream infections at the henry ford hospital in detroit, mi, in july to february ; % ( / ) had onset in the community ( ). among patients admitted to grady memorial hospital in atlanta, ga, in and found to be nasally colonized with mrsa, a population presumably having a great chance of health care exposure, ( %) carried usa strains ( ). in addition to infection-causing strains, usa has become increasingly common as a cause of asymptomatic colonization in the general population. in a nationally representative study of the noninstitutionalized u.s. population, the percentage of mrsa isolates recovered from nasal colonization that were usa strains doubled from . % in to to . % in to (p � . ) ( ). usa strains have been isolated disproportionately from certain high-risk groups in the united states. for example, of mrsa strains obtained in an international study of therapy of endocarditis, all patients with usa strains were from north america; these patients were younger, more likely to be black, more likely to be intravenous drug users (ivdus), and more likely to have right-sided endocarditis than were the patients with non-usa strains ( ). usa emerged later in canada than in the united states; table . pvl� strains of mrsa reported to cause infections among healthy populations in different regions of the world mlst predominant sccmec type(s) spa type(s) strain(s) regions where strain is common references st iv t , t ,t , t , t , t , t usa , cmrsa- united states, canada, europe, australia , , , , , , , , , , , st iv t usa , cmrsa- , wa-mrsa- united states, canada, europe , , , , , , , , , , , , , , , , , , , st iv t , t , t , t , t , t , t swp clone, wa mrsa, usa australia, united states, japan, latin america, turkey, egypt, middle east, europe , , , , , , , , , , , , , , , , , , , , , , st iv, v, vt t , t usa australia, europe, taiwan, united states , , , , , , , , , , , , , , st iv t , t , t , t , t , t , t european clone australia, europe, kuwait, algeria, tunisia, egypt, malaysia , , , , , , , , , , , , , , , , , , , , , st iv t queensland clone australia, england , , , , , , , , david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ limited evidence suggests that it may be following the same pattern of rapid dissemination in similar populations. usa was first reported by a large surveillance program in canada in , when it caused an outbreak of sstis in alberta ( , ). it was also isolated in to from sstis in msm patients in toronto ( ) and from the nares of an ontario schoolteacher in ( ). first noted as a cause of bactere- mia in the calgary health region in , usa quickly became the most common strain causing mrsa bacteremia, accounting for of ( %) reported cases in to ( ). in , people in calgary participating in a needle exchange program, a jail, a homeless shelter, or a substance abuse program were tested for colonization or infection with mrsa; . % carried usa ( ). usa was found to be the most common cause of skin infections in an emergency department in vancouver, canada, in to ( ), al- though it was isolated only once (among mrsa infections) among patients in the intensive care unit of a hospital in ed- monton, alberta, in to ( ). usa has more recently been identified in western eu- rope ( , , , , , , , , , ), japan ( ), and australia, where it has been called wa-mrsa- ( , , ), but it remains an uncommon cause of sstis in the community in those regions. the origin of usa has been uncertain, but o’hara et al. analyzed the luksf-pv dna sequences encoding the pvl toxin in a sample of international clinical mrsa iso- lates and hypothesized that usa emerged after a cc mrsa strain acquired the pvl genes from a preexisting usa strain ( ). if this is true, and if usa , en- dowed with the pvl genes, became more fit than usa , the acquisition of pvl might account for usa becoming the predominant mrsa genetic background circulating since ( , ). as noted above, genes carried by the acme element, specifically associated with usa , may be virulence factors ( , ). however, more research is needed to assess their importance. particularly needed is an eval- uation of the many open reading frames in the element that have not been adequately examined. a prototype usa clone, usa - , defined by the cdc by a pfge pattern ( ), has been sequenced ( ), as has another usa clone isolated from houston, tx. the two usa strains showed little difference in gene content, but they did have many polymorphisms in shared genes ( ). kennedy et al. sequenced the genomes of usa patient isolates from diverse geographical locations in the united states to assess genetic variation. those authors concluded from the relatively few single-nucleotide polymorphisms in the genomes that there has been a recent clonal diversification of a usa progenitor strain rather than an evolutionary con- vergence. two of the isolates, while genotypically closely related to the others, were associated with decreased virulence in a mouse sepsis model. these two isolates showed a de- creased in vitro secretion of lukf-pv and the absence of al- pha-hemolysin. one of these two isolates had a missense mu- tation in the agra gene (a regulator of many secreted exoproteins) that may have been the critical reason for its decreased virulence, but the other isolate did not share this missense mutation ( ). usa may also be a common pulsotype among clinical mssa isolates, suggesting that the genetic background, rather than the carriage of the sccmec element, may underlie the fitness of usa ( ). usa was the most common ge- notype among s. aureus strains causing nasal colonization among new york state prison detainees in to and accounted for % ( / ) of s. aureus isolates. seventy per- cent of the usa isolates were mssa. in the same prison system, usa strains accounted for % ( / ) of s. aureus isolates from infections ( ). of invasive mssa infections in children at a houston, tx, hospital, % ( / ) were from patients with osteomyelitis; % ( / ) of invasive infections were caused by usa in , and the percentage increased to % ( / ) in . of the pvl� mssa isolates in that study, ( %) were usa strains. this suggests that usa mssa may also be increasingly common as a cause of invasive infections in the community ( ). other prominent ca-mrsa genetic backgrounds since the s, mrsa strains with different genetic back- grounds carrying sccmec type iv or v elements have been identified as etiological agents of infections among previously healthy people in different parts of the world ( , ). these clones, like usa , tend to be susceptible to most non-�- lactam antimicrobial drugs, tend to be pvl�, and have been associated with distinctive sstis resembling spider bites and necrotizing pneumonia. it is likely that few countries have experienced epidemic community mrsa disease or frequent asymptomatic mrsa colonization among the general population as de- scribed for the united states. indeed, reported rates of asymptomatic mrsa colonization in the developing world, turkey, and northern europe suggest that rates are low. for example, in the prevalence of nasal colonization with mrsa was . % among hospitalized patients in mali ( ) and was similarly low in malaysia ( ). in brazil in to the prevalence of mrsa nasopharyngeal colonization in children younger than years of age with respiratory tract infections or meningitis within h of hospitalization was . % ( / ). all seven mrsa isolates obtained carried sccmec type iii ( ), typical of ha-mrsa strains. in switzerland in , only of , pediatric patients ad- mitted to a group of hospitals had mrsa colonization ( ). in england, colonization with mrsa in the commu- nity is rare, despite an estimated -fold increase in the rate of hospitalizations for abscesses, carbuncles, furuncles, and cellu- litis between to and to and a greater-than- -fold increase in the rate staphylococcal pneumonia ( ). sim- ilarly, in ankara, turkey, , schoolchildren were assayed for nasal colonization with mrsa in : . % carried s. aureus, but only . % ( children) carried mrsa ( ). the principal background genotypes of ca-mrsa strains other than usa are as follows. st . usa is the pulsotype of the strain of st ca- mrsa that predominated among ca-mrsa clones in the united states when first recognized in the late s. the genome of a prototype strain, mw , has been sequenced ( ). curiously, there were scarcely any transposons or insertion sequence (is) elements in the sequence, and many toxins were identified that were absent from other s. aureus genomic se- vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ quences, as were multiple superantigen genes. moreover, the sequence was highly similar to that of mssa , also a cause of severe invasive disease in an immunocompetent child ( ). mw was the ca-mrsa strain responsible for a fatal infection in a child from north dakota in ( ). usa was also identified in the community in to in saskatchewan, canada ( ), and in to in manitoba, canada ( ). usa remained the predomi- nant genotypic background of ca-mrsa strains in rural southwestern alaska in to ( ). despite the ability of usa to cause severe, invasive disease, soon after it was replaced by usa as the predominant ca-mrsa strain in most regions of the united states ( ) and later in parts of canada ( ). an st strain carrying sccmec type iv that has been usu- ally susceptible to most non-�-lactam antimicrobial drugs and has been found most commonly to cause sstis has been de- scribed. this strain lacked pvl genes and circulates in the community in australia, particularly in western and south australia ( , , ), and england ( , ); in australia, it is designated wa-mrsa- . st . ca-mrsa infections have remained infrequent in western europe relative to the united states. in europe, st is likely the most common pvl�, sccmec type iv-bearing mrsa strain causing such infections. pvl� st mrsa strains bearing sccmec type iv have been reported by many western european nations as an increasingly common cause of skin infections in the community ( ) in austria ( ), nor- way ( ), denmark ( , ), sweden ( ), england ( , ), switzerland ( ), and greece ( , ). st was a rare cause of sporadic invasive infections in france in to and accounted for . % of mrsa isolates collected during a national survey of patients with invasive disease ( ). it is not known why st strains have not spread to north america or why usa strains have not spread widely to western europe. less commonly, st mrsa strains have also been re- ported for other parts of the world. in a nationwide surveil- lance of mrsa isolates from outpatients in australia in to , / ( . %) isolates were st ( ). sccmec type iv-bearing, pvl�, st strains were also found to be the etiology of ca-mrsa infections in kuwait and comprised % of mrsa isolates collected by a reference laboratory from five hospitals in that country in to . these st isolates were isolated from inpatients and outpatients from skin, wounds, or groin ( ). in tunisia in to , st was the dominant genetic background identified among ca- mrsa isolates (i.e., isolated either from outpatients or from inpatients within h of hospital admission) ( ); st was also obtained from ca-mrsa (cdc criteria) infections in egypt ( ). in malaysia in late , a person was identified with mrsa nasal colonization by a pvl�, st strain that carried sccmec type iv ( ; v. neela, personal communi- cation). st . st corresponds to phage type / strains of s. aureus that were virulent nosocomial pathogens in the united states during the s and s. these strains were mssa strains and often carried the pvl genes ( ). an st mrsa clone, known as the southwest pacific (swp) clone, is likely a direct descendant of the older / clones and has long been a common human pathogen in australia ( , , , ). since the mid- s, mrsa st clones with dif- ferent pulsotypes and genetic characteristics have been re- ported from many parts of the world, including the united states, japan, latin america, turkey, the middle east, egypt, and many countries in western europe ( , , , , , , , , , ). st isolates reported from many regions, including pfge type usa in the united states, carry the genetic determinants of pvl and the sccmec type iv element ( ), but these clones have many spa types, sug- gesting continued evolution ( , , , , , , ). such ca-mrsa-type st mrsa strains have been reported more commonly than usa in certain countries, notably in australia in to ( ); it is not known why they persist as causes of community-associated infection in some regions and not in others. st . st isolates are prevalent in taiwan. strains that are pvl� have diverse spa types and several sccmec types. pvl� st isolates have also been recovered from patients in aus- tralia, taiwan, the netherlands, denmark, england, the united states ( , , , , , , , , ), and elsewhere. in taiwan, st clones with a distinctive sccmec dna sequence, type vt, and a multidrug-resistant phenotype are common ( ). for example, pvl� st isolates bearing sccmec type vt accounted for % ( / ) of mrsa strains colonizing healthy children in to at medical centers in three taiwanese cities. however, st strains that were pvl negative and carried sccmec type iv accounted for % ( / ) of mrsa strains from tested children ( ). among , adult workers in taiwan attending mandatory health screening in , . % ( / , ) had nasal mrsa carriage. of mrsa isolates, were st . among these, / ( %) carried sccmec type iv, of which / ( %) were pvl�; / ( %) carried sccmec type v, of which / ( %) were pvl� ( ). in taiwan, pvl� st strains tend to be resistant to more non-�-lactam antimicrobials than strains sharing this st background in other parts of the world ( ). in a study at the , -bed national taiwan university hospital in taipei in to , % of the available ca-mrsa isolates (by cdc criteria) from patients with bac- teremia were st strains ( ). st strains are currently rare in the united states, although an st clone called usa in the cdc classification has been identified spo- radically ( , ); the reasons for the high prevalence of st in taiwan, in contrast to its rarity in the united states, are not understood. st . the st queensland mrsa strain was first identi- fied in in queensland and new south wales, australia. it spread rapidly to become the predominant pvl� mrsa clone isolated from infections in those regions. for example, in to , in a national surveillance program in australia, / ( . %) mrsa isolates obtained from outpatients were st strains, and all were pvl�. among pvl� mrsa isolates, / ( . %) were st strains, and they were isolated in all regions of the country ( ). despite the high prevalence of this strain in australia ( ), it has rarely been identified on other continents ( ). it has been associated with severe in- fections, including necrotizing pneumonia ( ), as well as sstis ( ). a study of nasal colonization among healthy queensland residents in to demonstrated a . % david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ ( / ) mrsa carriage rate; % ( / ) of the mrsa isolates were st strains ( ). as with st in taiwan, st in western europe, and usa in north america, the procliv- ity of st strains to colonize and infect australians from certain regions with limited spread elsewhere ( ) is not un- derstood. staphylococcus aureus as a commensal organism: role of asymptomatic colonization the epidemiology of ca-mrsa strains remains incom- pletely studied, but it must be considered in the context of what is known about asymptomatic colonization dynamics of other s. aureus strains. most available information predates the emergence of ca-mrsa, and much of it is from europe, where ca-mrsa infections remain relatively uncommon. thus, the applicability of knowledge gained in that setting to the ca-mrsa strains epidemic in the united states is uncer- tain. the asymptomatic carriage of s. aureus by humans is the primary natural reservoir, although domestic animals, live- stock, and fomites may serve as adjunctive reservoirs. the anterior nasal mucosa has traditionally been thought to be the most frequent site for the detection of colonization of healthy carriers with s. aureus ( , , , ). the site sampled in the nasal mucosa may affect the demonstrable prevalence of colonization; for example, in one study, % of patients carried s. aureus in the cavitas nasi but not in the more distal vestibulum nasi ( ). also, certain rapid pcr-based labora- tory detection systems sometimes used in studies lack the sen- sitivity of culture and lack adequate sensitivity to detect small numbers of organisms ( ). a widely prevalent view was promulgated by kluytmans et al., who distinguished three patterns of asymptomatic s. aureus carriage in the general population. those authors estimated that % are persistent carriers, % are intermittent carriers, and % are noncarriers who rarely harbor the bacterium ( ). it is not known if ca-mrsa strains colonize people in this fashion. recent studies have suggested that other anatomical sites may be asymptomatically colonized with s. aureus in the ab- sence of nasal colonization. for example, among patients, health care workers, and blood donors in basel, switzerland, in to , s. aureus carriage was underestimated by . % when nasal cultures were not accompanied by throat cultures ( ). in a study of , people in switzerland in to , including inpatients, health care workers, healthy blood do- nors, and dental patients, throat carriage of s. aureus with no concomitant carriage in the nares was found for subjects ( . %). this was associated with an age of � years (or, . ; p � . ) and a lack of exposure to the health care setting (or, . ; p � . ) ( ). s. aureus colonization was found in the throat among orthopedic inpatients and staff more commonly than was colonization of the anterior nares ( ). among tested health care workers at a hospital in singa- pore, ( %) carried mrsa in the throat, in the nares, or in both. two ( %) were carriers in the throat and not the nose ( ). similarly, for mrsa colonization among european inpa- tients, assessments of nasal carriage may not be adequate to test for asymptomatic carriage. at an english hospital that practiced routine mrsa screening at multiple body sites in , mrsa colonization was identified slightly more often in the throat ( / ; . %) than in the nose ( / ; . %) or perineum ( / ; . %); importantly, / ( %) patients with positive throat swabs did not have an isolate from another body site ( ). although these findings were not supported by a study of adult icu patients in switzerland in where throat culture uniquely identified only of mrsa-colo- nized patients ( ), the preponderance of evidence suggests that the human oropharynx may be an important reservoir for mrsa colonization. the same may be true for ca-mrsa strains in europe or the united states, but data are lacking. in a study of ssti patients in los angeles, ca, % of ca-mrsa patients (cdc criteria) were colonized with mrsa in at least one of four tested anatomical sites: % were colonized in the nares, % were colonized in the axilla, % were colonized in the inguinal region, and % were colonized in the rectum. nonnasal colonization was identified for % of the patients, and % of colonized patients would have been identified by testing of nasal and inguinal swabs. in contrast to ca-mrsa, nonnasal s. aureus colonization was rare among ca-mssa, ha-mssa, and ha-mrsa patients ( ). the asymptomatic carriage of s. aureus can be dynamic. for example, in to at an australian hospital, half of patients found to be colonized with mrsa carried more than one strain, and only . % of colonized patients had persistent colonization at the same anatomical sites ( ). evidence from studies prior to the emergence of mrsa in the health care setting suggested that an individual with persistent nasal car- riage of s. aureus is generally protected against the acquisition of new s. aureus strains. intermittent s. aureus carriers, in contrast, may be at risk of acquiring mrsa colonization ( , ), although persistence and strain variability of s. aureus carriage have not been well studied in the ca-mrsa era. the reported duration of asymptomatic carriage of s. aureus has varied. in one study the half-life of mrsa nasal carriage was months ( ), and in another, nasal carriage of ca- mrsa isolates could be demonstrated for years or longer ( ). in a swiss hospital, even in the setting of a study of routinely attempted decolonization of mrsa carriers, the me- dian time to clearance was days, and the maximum was . years. risk factors for a longer duration of carriage were an- tibiotic use, the presence of an ssti, the presence of an in- dwelling device, receipt of immunosuppressive therapy, and hemodialysis ( ). at three suburban chicago hospitals, hos- pitalized patients were routinely screened for nasal coloniza- tion with mrsa. from these data and chart records of any history of mrsa infection or previous mrsa colonization, it was estimated that . % of patients ( % ci, . % to . %) continued to have mrsa carriage after year and that . % ( % ci, . % to . %) continued to have mrsa carriage after years ( ). mrsa colonization of the nares is believed to be a risk factor for a clinically apparent infection with mrsa ( , , , ), although the magnitude of the risk is not known. ellis et al. demonstrated that of ( %) u.s. soldiers tested at a texas army base carried mrsa in the nares, and vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ of the soldiers ( %) developed an ssti in the course of weeks, while only / ( %) soldiers carrying an mssa strain developed an ssti in the same period ( ). among , pediatric patients presenting for an outpatient physi- cian’s office visit in st. louis tested for s. aureus nasal coloni- zation, an ssti was self-reported for . % of those colonized with mrsa, . % of those colonized with mssa, and . % of those with no s. aureus colonization during a -year follow-up. for all three groups combined, ssti in the child during fol- low-up was associated with a history of ssti in the child during the year prior to initial enrollment and also with an ssti in a household member during the year of follow-up ( ). ca-mrsa infections often occur in people lacking simul- taneous nasal mrsa carriage ( , ). among pediatric patients with mrsa sstis at a baltimore medical center, only ( %) had mrsa nasal carriage, and only / ( %) patients with s. aureus recovered from an ssti and a nasal swab culture had a concordance of both s. aureus pfge type and susceptibility to methicillin in the two isolates ( ). most data relating mrsa colonization risk to risk for sub- sequent disease are derived from settings where ha-mrsa is endemic and may not apply to ca-mrsa strains. for exam- ple, mrsa nasal carriage among adult icu patients ( ) and nasal or stool carriage among patients with cirrhosis ( ) were a risk factor for subsequent infection. evidence that s. aureus nasal carriage predisposes one to infection with the same strain, which may or may not be ap- plicable to ca-mrsa strains, comes from a study in germany. among patients with s. aureus bacteremia, ( . %) had s. aureus in the nares of an identical pfge type. more- over, among patients with s. aureus bacteremia, had previous nasal carriage of the same strain as assessed by pfge ( ). it is believed that hand carriage of mrsa is the major means of nosocomial mrsa transmission, but its role in the transmission of ca-mrsa backgrounds like usa and usa outside the health care setting has not been defined. hand carriage of s. aureus was more likely for nurses with irritated skin ( ). furthermore, mrsa in the health care setting can be isolated from skin surfaces, such as the hands, even in the absence of nasal carriage ( ), and transient hand carriage has been repeatedly demonstrated among health care workers ( , , ) and may be more common among those wearing rings ( ). several studies from outside the united states have demonstrated the same phenomenon of mrsa transmission from health care workers to patients in the household setting. for example, a french study demon- strated that prior nursing home care was independently asso- ciated with infection by prevalent ha-mrsa strains when controlled for prior hospitalization, age of � years, and transfer from another institution ( ), suggesting transmis- sion from health care workers to patients in their homes. a brazilian study demonstrated the transmission of mrsa from patients to their home-visiting health care workers ( ). these data may not be applicable to an understanding of the transmission of ca-mrsa strains in households; if ca- mrsa is similarly transmitted from person to person by hand carriage, specific hand washing interventions may be appropri- ate to prevent its spread. risk factors and high-risk groups for ca- mrsa carriage or infection in the united states prior to the late s, mrsa infections were confined largely to patients and others who had known exposures to the health care setting, but the epidemic of ca-mrsa infections in the united states has required a redefinition of the risk factors for mrsa disease. ca-mrsa infections have been reported for diverse populations, including adults and children, residents of inner city neighborhoods, native american (na) and pacific islander populations, incarcerated and military populations, and athletes, who lack risk factors for exposure to the health care setting. low socioeconomic status may be one common link among many of the identified high-risk groups, although many patients with ca-mrsa infections have no apparent risk factor ( ). environmental, behavioral, or other as-yet-unidentified social risk factors for ca-mrsa coloniza- tion await systematic study. new mrsa risk factors for infection or colonization with mrsa in the community have been identified since . groups thought to be at high risk for mrsa infection based on anecdotal occurrences are listed in table . each will be discussed in detail in this section; people in close contact with individuals in these groups may also be at an increased risk. further research is needed to assess how these risk groups interact and what risk factors or exposure they may have in common. in addition to the putative high-risk groups for ca- mrsa infection listed in table , there has been evidence of ca-mrsa strain transmission among children in day care centers ( , ) and outbreaks of mrsa sstis within families ( , , , , , , , , ), among children on a camping trip ( ), among ivdus ( ), and in individuals exposed to another person with an ssti by skin-to-skin contact during sexual activity ( ). inhalation drug use has also been shown to be a means of s. aureus transmission ( ) and may play a role in ca-mrsa trans- mission, although this has not been well studied. recent use of antibiotics has been associated with mrsa colonization ( ) and infection ( , ), but it is not known if this is an independent risk factor for mrsa or an association that may have confounding variables. patients with atopic der- table . groups presumed to be at risk for ca-mrsa infections in the united states at-risk group neonates children beyond the neonatal period athletes household contacts of mrsa ssti patients emergency department patients urban undeserved communities indigenous populations detainees in jail or prison cystic fibrosis patients military personnel men who have sex with men hiv patients veterinarians, livestock handlers, and pet owners david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ matitis have long been known to be predisposed to s. aureus and, by extension, mrsa infections and colonization; of children with atopic dermatitis in philadelphia, pa, in , % ( / ) had skin or nare colonization with s. aureus, and % ( / ) carried mrsa ( ). while many studies have demonstrated that the prevalence of ca-mrsa infections has increased rapidly among certain populations in the united states, the prevalence of nasal col- onization in the general population has increased less rapidly and remains relatively low ( , ). for example, among healthy students and faculty members at a community college in hawaii, an area with a high rate of mrsa infection, % were colonized with mrsa ( ), similar to the rate among health care workers at johns hopkins university hospital in to , in the midst of epidemic ca-mrsa invasive infections in baltimore ( ), where only % were colonized with mrsa ( ). in the national health and nutrition sur- vey (nhanes), which is administered to a demographically and geographically representative sample of the noninstitu- tionalized u.s. population, an estimated . million americans carried mrsa in the nares in to , or . % of the population ( , ). in to the prevalence of mrsa nasal colonization nearly doubled to . % of the pop- ulation despite an overall decrease in the percentage of the population colonized with any s. aureus strain between to and to ( . % versus . %; p � . ) ( , ). the relatively low rates of colonization determined from the nhanes survey and other studies may reflect, in part, geographic variability, a characteristic of the ca-mrsa epi- demic to date, or an anatomical site of mrsa carriage other than the nose. the epidemiology of ca-mrsa is complex, and several studies suggested that there is no obvious boundary dividing the populations at risk for mssa and mrsa infections in the community, even in high-risk settings such as a jail ( ). a study in los angeles demonstrated that adult patients with community-onset mrsa could not be distinguished from adult patients with community-onset mssa infections by character- istics such as age, race, comorbidities, site of infection, antibi- otic use, duration of symptoms, bathing habits, level of educa- tion, level of crowding at home, substance use, history of homelessness, sexual behavior, or use of a public shower, spa, pool, or gym ( ). thus, it is difficult to determine which patients with suspected s. aureus infections require specific therapy for mrsa. neonatal mrsa infections and maternal colonization and infection s. aureus, whether susceptible or resistant to methicillin, has long been known to be a cause of epidemic and endemic disease and a cause of infection in the first days of life among newborns in neonatal intensive care units (nicus) and other settings. since , there has been an increasing number of reported outbreaks and cases caused by ca- mrsa strains. several neonatal mrsa outbreaks have been linked to ca-mrsa strains ( , , ), including usa ( , , , , ) and usa ( ) strains, and have been associated with visiting fathers ( ), maternal mastitis ( , ), expressed breast milk ( ), peripartum maternal mrsa infection ( ), and health care workers colonized or infected with mrsa, implying a community source ( , , , ). case reports and case series have described a variety of clinical syndromes and means of introduction of mrsa into neonatal units. in to in texas, neonatal mrsa infection in healthy term and near-term newborns was as- sociated with a history of maternal mrsa skin infection ( ). among mrsa sstis in mothers and newborn infants at a toronto, canada, hospital in , the source was linked to a health care worker with eczema. the ma- jority of the isolates were usa mrsa strains but were resistant to clindamycin and ciprofloxacin ( ). cases of severe, fatal neonatal mrsa pneumonia caused by usa have also been reported among neonates ( , ), as has necrotizing fasciitis ( ). what is the source of neonatal s. aureus acquisition? ver- tical transmission undoubtedly plays a role. there is evidence that vaginal colonization with s. aureus is common ( ), but vaginal mrsa colonization is unusual and has rarely been linked to neonatal infection. neonatal dacrocystitis, lung ab- scess, and empyema were believed to result from vertical trans- mission from the mother of a -day-old infant in los angeles in ( ; t. ruter, personal communication). however, among , pregnant women in alabama in to , . % were vaginally colonized with mrsa, but no neonatal mrsa infection was documented. women with mrsa vagi- nal colonization in that study were more likely to be black, unmarried, and intravenous drug abusers and to have a lower level of education ( ). a study in cleveland, oh, demon- strated a . % prevalence of nasal or vaginal colonization with mrsa among women admitted to a labor and delivery unit; one woman had mrsa colonization at both sites. there was no association between neonatal infection and maternal colo- nization with s. aureus ( ). in new york city in , . % ( ) of , pregnant women undergoing culture for group b streptococcal vaginal colonization had vaginal mrsa colonization ( ). in a case- control study of that same population, women with any s. aureus vaginal colonization ( / ) were more likely than those without s. aureus colonization ( / ) to have a postpartum fever ( ), suggesting that s. aureus vaginal colonization may be a risk factor for infection. in another study from new york city, / ( . %) women in labor at term had nasal or vaginal colonization with mssa, and / ( . %) had mrsa. infants born to these women underwent skin and nasal cultures after birth and again at h; / ( . %) infants were col- onized with mssa, and / ( . %) infants were colonized with mrsa. a total of / ( . %) infant-maternal pairs both carried mssa, and / ( . %) pairs both carried mrsa (i.e., the maternal vaginal colonization and the infant -h cultures were positive for mrsa). the infant and maternal mrsa strains in the concordant pair were identical by pfge. at a -week follow-up, the single infant colonized at h with mrsa and four infants not colonized with any s. aureus at birth or at h developed s. aureus infections. that study suggested that mrsa colonization of neonates was not com- mon and that most s. aureus infections of newborns were not due to vertical transmission ( ). colonization in the hospital by means other than vertical vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ transmission likely plays a major role in neonatal colonization. for example, in a hospital in florida, mother-neonatal pairs were assessed for mrsa colonization by nasal swabs of mothers and neonates, umbilicus cultures of the newborns within h after birth, and a vaginal culture of the mother within h prior to delivery. only vaginal births were included. six ( . %) mothers and two ( . %) newborns were colonized with mrsa; no mother-infant pair shared the same sccmec type. colonization of mothers was associated with black race, antibiotic use during pregnancy or intrapartum, and atten- dance by another child of the mother at a day care or an after-school program ( ). outside the united states, mrsa vaginal colonization has been studied less well. in japan, oropharyngeal mrsa colo- nization in the first week of life in extremely low-birth weight infants in an intensive care unit in to was associated with an increased risk of mrsa sepsis and with mrsa colo- nization during week of life. those authors hypothesized that colonization of the oropharynx in the first week of life with other, nonpathogenic bacteria may protect against colonization with mrsa ( ). this suggests that colonization of the maternal vagina may not be implicated in neonatal mrsa infections. in an israeli nicu in to , among cases of mrsa bacteremia, were caused by sccmec type iv-bear- ing, pvl-negative strains susceptible to all non-�-lactam anti- microbial drugs tested, suggesting a ca-mrsa strain. infants with infections caused by ca-mrsa strains did not differ in risk factors or outcomes compared to mssa infections or mdr mrsa infections ( ). those authors concluded that it was difficult to judge the likelihood of mrsa infection in a hospitalized neonate with a suspected s. aureus infection; they recommended in such cases that initial treatment include an agent effective against mrsa (guided by the local s. aureus antibiogram). thus, it appears that neonates in both the united states and some foreign hospitals face the risk of early mrsa infections that may be related to vertical transmission but that neonates fre- quently acquire mrsa from other sources as well. more research is necessary to enact effective measures to curtail potentially fatal mrsa infections among neonates. children beyond the neonatal period ca-mrsa in the united states was first identified in the s among children in the midwest ( ). since that time many areas in the united states have experienced a steep rise in the prevalence of colonization and the incidence of infection with mrsa among healthy children. in contrast, few other countries have experienced a comparable burden of pediatric ca-mrsa infections. early reports. the emergence of community-based mrsa disease in the united states was heralded by the observation that children with mrsa sstis and no known exposure to health care environments presented with increasing frequency to the university of chicago hospitals between to and to ( ). a follow-up study in to demon- strated a continued high rate of hospitalization for ca-mrsa disease at that institution ( ). those same investigators dem- onstrated asymptomatic carriage of mrsa in otherwise healthy children in the community in chicago ( , ). at the nearby university of illinois at chicago, a similar phenomenon was doc- umented during the late s through the surveillance of infec- tions of children caused by mrsa strains susceptible to clindamycin ( , , ). the early ca-mrsa isolates from the university of illinois and those from the university of chicago were genotypically similar ( ); they were subse- quently shown to be predominantly usa strains ( ). in addition, in , cases of fatal severe sepsis from mrsa were reported among previously healthy children in chicago and elsewhere in the midwest ( , ), also caused by mrsa usa . mrsa colonization prevalence in u.s. children is increas- ing. nationally representative data showed that the prevalence of nasal carriage of mrsa in noninstitutionalized children aged to years more than doubled from . % in to to . % in to ( ). however, studies from several cities in the united states have demonstrated an even more rapid rise in the prevalence of asymptomatic mrsa colonization of children. in nashville, tn, in , . % of children attending two clinics for health maintenance visits were colonized by mrsa ( ), an increase of more than -fold from , when a similar study showed that . % of children were colonized ( ). among , children present- ing to pediatric practices in st. louis, mo, in to , . % had nasal colonization with mrsa. risk factors for col- onization included pet ownership, participation in sports, and fingernail biting. of the mrsa isolates obtained, % carried sccmec type iv and were therefore considered ca-mrsa strains ( / usa , / usa , and / usa strains); black race and medicaid enrollment were dispropor- tionally represented among carriers of ca-mrsa compared with ha-mrsa genotypes ( ). within h of admission to a children’s hospital in corpus christi, tx, in , a conve- nience sample of / ( %) pediatric patients had mrsa nasal colonization, one of the highest prevalence rates re- ported for any u.s. population ( ). increasing burden of ca-mrsa infections among u.s. chil- dren. many medical centers in the united states have docu- mented an increasing burden of ca-mrsa infections in chil- dren as a percentage of s. aureus infections, an absolute increase, or both ( , , ). children in texas cities experienced ca-mrsa earlier than in many parts of the united states. for example, in a children’s hospital in corpus christi, mrsa infections were identified in outpatients and inpatients in to . among these patients, ( %) had ca-mrsa infections (by the cdc criteria for nosocomial infections [ ]), and in % of patients ( / ), no ha-mrsa risk factors (i.e., no chronic disease; no day care attendance; no household contact with a known risk factor; no hospitalization, antibiotic use, or surgery in the previous months; no indwelling catheter; and no history of intravenous drug use) were identified. a rapid rise in the number of cases in each subsequent year was noted: of the ( %) cases occurred in , the final year of the study ( ). in follow-up studies examining trends from to at the same hos- pital, it was reported that the number of ca-mrsa infections increased rapidly, from to per year in to to per year in ( ) and to per year in ( ). in a prospective study in at texas children’s hospital in houston, % of community-acquired s. aureus infec- david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ tions were ca-mrsa (i.e., children lacked risk factors for health care exposure). there was a high monthly proportion of ca-mrsa among community-onset s. aureus disease isolates that increased from % in august to % in january ( ) and to . % in ( ). at another hospital in houston, among children hospitalized in to , ca- mrsa (i.e., isolates from lesions cultured � h after hospi- talization) accounted for % of community-associated s. au- reus infections ( ). at a pediatric hospital in memphis, tn, in to , % of patients with mrsa isolates from clinical infections were ca-mrsa (by cdc criteria). this percentage of mrsa isolates that were from ca-mrsa infections increased from % in the first months of the study to % in the last months. fifteen of the ca-mrsa isolates tested shared the usa pulsotype ( ). children who presented in to to johns hopkins university hospital with a skin infec- tion caused by s. aureus were more likely to have an mrsa infection if they were african american or if they lived in a zip code near the hospital, an area with a high rate of poverty ( ). of s. aureus sstis in children at the johns hopkins ed in to , % ( / ) were caused by mrsa; % were ca-mrsa infections (by the cdc criteria) in , and this percentage increased to % in the second year ( ). ca-mrsa pediatric infections outside the united states. asymptomatic ca-mrsa colonization has not been reported for children in other countries, with a few exceptions. in asia, reports that identified isolates that were predominantly st and pvl� and carried sccmec type v or vt have come from taiwan, south korea, and japan. a single colonizing mrsa genotype was identified among several schoolchildren in one class in taiwan ( ). in taiwan in , of ( . %) kindergarteners in taipei had nasal mrsa colonization ( ; w. t. lo, personal communication). in to , . % of , children � years of age in kindergartens or presenting to a physician for a health maintenance visit in taipei, taiwan, had mrsa nasal colonization, and . % ( ) were colonized by pvl� strains. of the pvl� strains, % were resistant to clindamycin, and % carried sccmec type vt ( ). in a separate study, . % of , children in taiwan attending well-child visits had mrsa nasal colonization in to ( ), an increase compared with . % ( / ) of schoolchil- dren in to ( ). in seoul, south korea, at an outpatient clinic at a tertiary care hospital, . % ( / ) of children presenting for care had mrsa nasal colonization in to ; of these, / isolates were ca-mrsa (by the cdc definition), and / ca-mrsa isolates belonged to st bearing sccmec type iva ( ). in niigata, japan, in to , / ( . %) children attending outpatient phy- sician’s office visits had mrsa nasal carriage; in to , / ( . %) healthy children living with their families in eight prefectures had mrsa nasal carriage. none of the children in that study had been hospitalized in the previous year, and the mrsa isolates had a variety of genetic backgrounds, with none carrying the genes for pvl ( ). in narketpally, andra pradesh, india, in , / ( . %) children aged to years had nasal carriage of mrsa, but genotyping studies were not conducted ( ; k. v. ramana, personal communication). mrsa infections have also been reported for children in a few regions of asia. at a hospital in taiwan, mrsa isolates were obtained from clinical infections of children in to . of the isolates, % ( ) were ca- mrsa by the cdc case definition; of these, % were st , % were pvl�, % carried sccmec type vt, and % carried sccmec type iv. in contrast, among isolates from health care-associated mrsa infections, only % were st and carried the pvl genes, % carried sccmec type vt, and % carried type iv ( ). mrsa infections in nine children in vietnam, including one fatal case of severe sepsis, were believed to result from exposure to a community vaccinator who was colonized with an st strain bearing sccmec type v ( ). in cambodia, children in to had ca- mrsa infections by cdc criteria identified by surveillance at a clinical microbiology laboratory at a single children’s hospi- tal. the causative strains were st with sccmec type iv and were pvl negative or st with sccmec type v and were pvl� ( ). at pediatric hospitals in five chinese cities, ca-mrsa (by cdc criteria) infections in to were reviewed retrospectively. several mlsts were repre- sented, including st , st , st , and st ( ). in latin america, europe, and australia, case series have documented the presence of ca-mrsa in children. in to , / , ( . %) children attending day care centers in mexican cities had nasal carriage of mrsa; however, only . % of the children were identified as being s. aureus carri- ers, a rate lower than that found by most studies ( ). in buenos aires, argentina, in , five sstis in children with- out exposure to the health care system were caused by pvl� mrsa strains carrying sccmec type iv ( ). at a clinic in athens, greece, ca-mrsa infections (by cdc criteria) among children younger than years old were recorded in to ; % ( / ) of the strains belonged to one pfge clonotype (similar to the pfge type of st strains) that was pvl� and sccmec type iv. twenty of the strains ( %) belonging to this clonotype were isolated from patients with sstis ( ). in new south wales, australia, a retrospective review of gentamicin-susceptible mrsa infections in to at a children’s hospital showed that of mrsa infections were caused by ca-mrsa (i.e., no health care ex- posure in the previous months and a culture obtained � h after admission). of the infections, % caused sstis, and the majority were st strains carrying sccmec type iv ( ). thus, ca-mrsa infections and colonization of children have been reported outside the united states; as it was in the united states, pediatric infections may be a harbinger of an epidemic to come in the general population of these countries. athletes mrsa infections have been reported for members of ath- letic teams in a variety of sports and related activities such as dance ( ), at levels from high school to professional in a variety of sports (table ). the frequency of these reports has suggested that athletes constitute a population at risk for mrsa infections and that athletic facilities constitute a new environment for the transmission of mrsa outside the health care system. causative isolates obtained from athletes have usually shared characteristics with ca-mrsa strains, and usa vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ has been identified as a frequent cause ( ). risk factors identified among athletes have included sharing personal items, such as soap, towels ( ), razors, athletic training equipment, and clothing, in addition to poor hygiene habits ( , ). in one case-control investigation of a usa ssti outbreak on a high school football team, higher body mass index was a risk factor for mrsa infection ( ). data from texas and nebraska suggest that mrsa infections among high school athletes are very common and increasing in incidence. among athletic trainers at texas high schools responding to a survey, ( . %) reported that they were aware of at least one case of mrsa infection in their athletic department in to ( ). among nebraska high schools sur- veyed, . % reported having at least one athlete with an mrsa infection in to , while . % reported at least one infection in to ( ). while mrsa sstis have afflicted participants in many sports, football teams have been most frequently implicated. an outbreak in a college football team resulted in mrsa sstis in . % ( / ) of players in and . % ( / ) of players in . the rate decreased to . % ( / ) of players in with the introduction of an educational campaign, hexachlorophene-containing soap, disposable towels, shower- ing before use of the athletic training room, improved decon- tamination of athletic training and weight room equipment, and increased availability of hand sanitizers ( ). unfortu- nately, it is not known which of these interventions, if any, contributed to the decreased rate of infection. a case-control study after an ssti outbreak in in a florida college football team identified previous skin abscess as the only in- dependent risk factor for an mrsa ssti among patients ( ). an outbreak of confirmed and suspected (cellulitis during the outbreak period with two or more of the following: swelling, fever, heat, or purulence) cases occurred in a college football team in august to september ; the three mrsa isolates tested belonged to usa or usa , and risk fac- tors for infection included the use of hydrocollator packs and other athletic training equipment as well as being a lineman or a tight end ( ). in a meta-analysis of four previously pub- lished studies ( , , , ) of players from three division i college football teams in to , mrsa infections occurred in . % ( / ) players, primarily on the extremities, with no relationship to position played ( ). household contacts of mrsa patients transmission of s. aureus in the household setting was doc- umented prior to the ca-mrsa epidemic ( ), but new table . athletic activities in which participants were reported to have mrsa infections sport yr location level of competition reference(s) football – california college , pennsylvania college illinois high school new york high school west virginia college not stated california college pennsylvania college florida college – texas high school – texas college connecticut college missouri professional badminton vladivostok, russia unknown basketball not stated virginia college – texas college cross-country running – texas high school fencing – colorado unknown rugby united kingdom unknown saturation diving unknown texas unknown soccer – netherlands unknown slovenia unknown volleyball – texas college – texas high school weight lifting – texas college wrestling – vermont high school indiana high school – texas high school david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ attention has been focused on the issue, with anecdotal sug- gestions that such transmission may be common. reports of household contact transmission of ca-mrsa have been doc- umented among health care workers ( ) and, more recently, among non-health care workers in the community ( , , , , ) in the united states, but the subject has not been studied rigorously. the role of fomites in household transmission is not known (see below). household transmission of ca-mrsa strains in the united states, europe, and elsewhere ( , , , , , , , , , , , ) has been reported. for example, among mrsa infections of families of military personnel in san diego, ca, % of the isolates in were from patients who had a family member who also had an mrsa infection in the same year ( ). in europe, where contact tracing of index mrsa cases is commonly performed, several case reports demonstrated household transmission ( ). in greece in to , among ca-mrsa infections of children, . % had suspected transmission of mrsa from family members ( ). in lund, sweden, in to , household contacts were tested routinely for mrsa coloniza- tion when a hospitalized patient was identified with an mrsa infection. in of cases with contact tracing, colonized household contacts were identified. in the households with colonized contacts, % of the contacts were colonized with mrsa in the anterior nares, throat, or perineum or at the site of a skin lesion. with a single exception, all mrsa isolates from household contacts shared the spa type of the isolate from the corresponding index patient ( ). sexual activity or other skin-to-skin contact may be a means of household ca-mrsa transmission ( ), as was suggested by the apparent heterosexual transmission of usa among members of three households in new york city in to ( ). more research is needed to assess the role of mrsa transmission within households and by sexual contact. emergency department patients u.s. ed visits for sstis increased from an estimated . million in to . million in , an increase from . % to . % of all ed visits ( ), likely reflecting the impact of ca-mrsa. eds serve as a safety net that provides health care for uninsured populations in the united states, and thus, the number of sstis treated may reflect the prevalence of these infections in communities with a low socioeconomic status (ses). the higher ses of patients in private physicians’ offices, in contrast, may explain why a similar study of u.s. physicians’ offices in to , using data from the national ambula- tory medical care survey, did not show an increase in the percentage of all office visits due to dermatitis or ssti during this period ( ). several studies of eds support the finding that there is an increase in mrsa disease among ed patients. in august , among university-affiliated eds in u.s. cities, mrsa accounted for % of s. aureus sstis; % of the mrsa isolates were usa strains ( ). cultured skin lesions among adults presenting to an ed in cincinnati, oh, with an ssti in months during yielded mrsa at a rate of %. risk factors for mrsa infection included in a best-fit multi- variable regression model were young age, sexual contact in the past month, the presence of an abscess cavity, and resi- dence in a group home ( ). in a nashville, tn, ed, mrsa was isolated from . % ( / ) of adult and . % ( / ) of pediatric ssti cultures in to ( ). of a convenience sample of children who presented to an urban north carolina emergency department with abscesses in to and underwent drainage, % ( / ) of isolates grew s. aureus; % ( / ) were mrsa ( ). among children with sstis presenting to a suburban new jersey ed in to , % of isolates grew mrsa ( ). in philadelphia in , / ( %) community-associated (by cdc criteria), culture-proven hand infections of adults presenting to an ed were caused by mrsa; mrsa was associated with intrave- nous nonmedical drug use and a high white blood cell (wbc) count of � , cells/ml ( ). in a chicago, il, ed, surveil- lance in to demonstrated that among mrsa isolates recovered from ambulatory patients, . % were sus- ceptible to clindamycin, . % carried sccmec type iv, . % were pvl�, . % were st , and . % were sstis, all char- acteristics of ca-mrsa strains and the sstis that they cause ( ). at two military hospitals in texas in to , % of abscesses cultured yielded mrsa ( ). mrsa was the most common etiology of septic arthritis identified among synovial fluid cultures sent from two eds in california in to ; / ( %) cases diagnosed as septic arthritis were caused by mrsa, and / ( %) were caused by mssa ( ). there are fewer studies from eds outside the united states. at a french ed in to , patients with mssa and mrsa were compared. of mrsa patients, were younger than years of age and had no known health care exposure ( ), documenting the existence ca-mrsa patients served by an ed in france. in a surveillance study of eds in to in hong kong, mrsa was responsible for a minority, / , of ssti cultures and / s. aureus ssti cultures. ca-mrsa (cdc criteria) accounted for / abscess cul- tures, of which were pvl�; all carried sccmec type iv or v. six were st strains and were susceptible to all non-�- lactams tested. five were st strains with variable suscepti- bility to tetracycline, clindamycin, and erythromycin. of the ca-mrsa sstis, were infections of foreign workers from the philippines ( ). in an ed in madrid, spain, in , seven ca-mrsa (by cdc criteria) sstis were diagnosed in children: / isolates obtained were st isolates bearing sccmec type iv, and / of these were pvl� ( ). ca-mrsa infections are often treated in eds, which pro- vide care to an underserved and underinsured population in the united states; more research is needed to determine why they are a focus of the ca-mrsa epidemic. urban underserved communities studies of medically underserved communities in u.s. cities have revealed foci of ca-mrsa sstis and frequent asymp- tomatic mrsa nasal colonization. in san francisco, ca- mrsa has been well documented to have targeted certain adult populations. for example, in to , . % of homeless or poor adults harbored mrsa ( ), a rate higher than that found in to in the general u.s. population ( ). among ivdus in that city in , . % carried mrsa. vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ of the mrsa isolates genotyped, carried sccmec type iv ( ). of isolates from adult patients at a clinic opened to treat sstis in an underserved community in to , % were s. aureus, and % of the s. aureus isolates were mrsa isolates. many of these patients were ivdus ( ). at an urban public hospital in that same city, among patients from a population skewed to the homeless and ivdus in to , % of cultures from sstis grew mrsa. of cultures obtained from the nose or an ssti in this population, % were mrsa isolates; % carried sccmec type iv, and . % were pvl� ( ). among homeless and runaway youths ( to years old) in san francisco in , . % of subjects had nasal mrsa colonization. of the mrsa isolates iden- tified, % were strains of usa or usa ( ), well- known ca-mrsa clones. among homeless men and women in cleveland, oh, . % ( / ) had nasal carriage of mrsa; mrsa carriage was associated with antibiotic use in the previous days (p � . ), a history of alcoholism (p � . ), current smoking (p � . ), and a lower frequency of staying with a friend for at least night in the previous days (p � . ) than non-mrsa carriers. all of these associations remained significant upon multivariate analysis except ciga- rette smoking (dates of the study were not provided) ( ). it is likely that usa is more widespread in populations affected by poverty. mrsa isolates causing community-onset sstis in to from stanford university hospital (suh), located in a suburban area that serves a population largely covered by private insurance, were compared with those from san francisco general hospital (sfgh), a hospi- tal serving an inner-city community. at suh, mrsa isolates were less likely to carry sccmec type iv ( % versus %) and less likely to be pvl� ( % versus %). furthermore, % of sstis at suh had their onset in the community, compared with % at sfgh. usa was the dominant clone causing sstis at sfgh in but was not at suh. being nonwhite and younger than years of age were asso- ciated with infection caused by sccmec type iv-bearing and pvl� strains of mrsa ( ). similarly, in chicago, contrasting the experiences of a large public hospital and a large private hospital demonstrated dif- ferent epidemiological patterns. at cook county hospital and its associated clinics, an increase in the incidence of ca- mrsa sstis from cases/ , population in to . cases/ , population in was documented. in january to august , ca-mrsa sstis were recorded (using criteria similar to the cdc case definition). risk factors for ca-mrsa infection, compared with ca- mssa infection, included recent incarceration, african amer- ican race, and residence in a public housing complex ( , ). in contrast, among adults hospitalized in to at northwestern memorial hospital in chicago, located near the more-affluent loop region, only . % (n � ) of mrsa isolates cultured from , patients within h of hospital admission were clindamycin susceptible (a frequently used proxy for ca-mrsa isolates) ( ), suggesting that ca- mrsa disease had remained infrequent during that period in that population. in other cities, including dallas and atlanta, racial and so- cioeconomic disparities predisposing one to mrsa infection risk were similarly documented. for example, during months in at a dallas hospital, among inpatient adults with s. aureus infections with isolates cultured within h of admis- sion, % had mrsa infections. the patients with mrsa were more likely than patients with mssa to have a history of homelessness, to be african american, to have an ssti, and/or to have used antibiotics in the previous months ( ). in atlanta in at a large public hospital serving the inner city, . % of hospitalized patients had nasal colonization with mrsa at admission. risk factors included hiv infection, ssti, recent use of antibiotics, or admission to the hospital in the previous months ( ). a study in atlanta in at a , -bed public hospital and its affiliated clinics found that the usa strain was the predominant cause of s. aureus sstis diagnosed in outpatients or within h of hospital admission and that african american race, female sex, and hospitaliza- tion within the previous months were independently asso- ciated with infection by a ca-mrsa strain ( ). by , most major urban centers in the united states had reported ca-mrsa case series. however, geographic variation continued. for example, ca-mrsa was recog- nized later on the east coast than in the midwest, texas, tennessee, and california. in to , among patients enrolled in a methadone program in new york city who were not current i.v. heroin users, only ( % of all tested) had nasal colonization with mrsa. these mrsa isolates were genetically distinct from locally prevalent ha- mrsa strains; of the mrsa colonization isolates car- ried sccmec type iv ( ), suggesting a community origin. since , however, usa has become more common in new york city, and infections with usa have been associated with a higher incidence in neighborhoods with lower ses. in a study from brooklyn, ny, in to , hospitals in areas with a low ses (by several measures) were reported to have a higher rate of usa infections than hospitals in areas with a higher ses ( ). outside the united states, few studies have documented similar associations between ca-mrsa and low ses. an ex- ception was in alberta, canada, where ca-mrsa infection was associated with homelessness ( ). indigenous populations multiple indigenous populations, including native american (na), first nation (manitoba and nunavut, canada), austra- lian aboriginal, pacific islander, and alaska native ethnicities, have been associated with a high risk of infection with ca- mrsa strains (table ). many of these groups are disadvan- taged in their societies, and their association with lower ses may be responsible for the increased risk of ca-mrsa infec- tion ( ). in australia, ca-mrsa was first noted for aborig- inal communities, a socially disadvantaged group with crowded living conditions and frequent use of antimicrobial drugs ( ). in a small indigenous community in australia, % of tested children had either infections or colonization by mrsa ( ). in the united states, at hospitals administered by the indian health service, mrsa-associated hospitalizations increased from . per , american indians/alaska natives in to to . per , in to . among these patients, % had a diagnosis of ssti ( ). pacific islanders in many regions have been found to be a david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ table . indigenous populations and ca-mrsaa ethnicity yr study summary setting reference(s) native americans (united states) % ( / ) of isolates identified in a review of mrsa infections at an indian health service facility were ca-mrsa (i.e., obtained from an outpatient or � h after admission from an inpatient, no history of hospitalization, renal dialysis, or residence in an ltcf in the previous yr, and no documentation of i.v. drug use); the percentage of s. aureus isolates that were mrsa in this community increased from % in to % in , % in , and % in rural midwestern native american community . % ( / ) of patients had asymptomatic carriage of mrsa; % ( / ) were ca-mrsa (i.e., taken from a patient without inpatient health care exposure, hemodialysis, or occupation in a health care facility in the previous year); of the ( %) mrsa isolates were closely related by pfge typing; / ( %) isolates were susceptible to all non-�-lactam antibiotics tested with the exception of erythromycin ( / were resistant to erythromycin) predominantly native american community, washington state native alaskans (united states) , outbreaks of mrsa sstis; causative isolates were predominantly st , st , or st , all were pvl�, and all carried sccmec type iv remote native alaskan villages, southwestern alaska , , australian aboriginal people and pis mrsa colonization in of ( %) children in nose, throat, or skin wounds; / ( %) carried pvl� st strains, and / ( %) carried pvl� st strains; / ( %) carried pvl-negative st strains; / ( %) were susceptible to all tested non-�-lactam antibiotics indigenous community, schoolchildren in grades - , queensland, australia – cases ( pediatric and adults) of severe invasive infections with either st or st pvl� mrsa isolates obtained � h after admission, with no health care exposure or antibiotics in previous months; / ( %) patients were pis or of aboriginal ethnicity large hospitals, southeast queensland, australia – community-acquired wa-mrsa (i.e., western australian strain, defined by antibiotic susceptibilities) infections were more likely to occur in aboriginals than in non-aboriginals (rr, . ; % ci, . - . ) royal darwin hospital, northern territory, australia – gentamicin-susceptible mrsa isolates from infections; were community acquired; / ( %) patients had no health care exposure; / ( %) were pis, and / ( %) was aboriginal; all isolates from pis or australian aboriginal people were of the same pulsotypes clinical microbiology laboratory, hospitals, brisbane metropolitan area, queensland, australia – of episodes of community-onset mrsa bacteremia (i.e., patients with isolates cultured � h after admission, with no indwelling catheter, and with no history of hospitalization or stay in an ltcf in previous days) in patients, / ( %) patients self-identified as being aboriginal, while % of the population served by the hospital was aborginal; isolates carried sccmec type iv royal darwin hospital, northern territory, australia – case-cohort study of non-mdr mrsa (i.e., resistant to � tested non-�-lactam antibiotics) infections compared with matched mssa-infected patients ( : ) and mdr mrsa-infected patients ( : ); aboriginal or torres strait islanders had an odds ratio of non-mdr mrsa infection compared with mdr mrsa infection of . ( % ci, . - . ) upon univariate analysis; this was not significant upon multinomial logistic regression hospitals, southeast queensland, australia – gentamicin-susceptible mrsa infections of patients; patients were pis ( % had st sccmec type iv isolates), and were aboriginal ( % had st pvl�, sccmec type iv isolates); all episodes of bacteremia were in aboriginal children with an st strain; pis and aboriginals each accounted for � % of the population of new south wales pediatric teaching hospital, new south wales, australia continued on following page vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ table —continued ethnicity yr study summary setting reference(s) – % ( / ) of infections caused by non-mdr mrsa isolates (i.e., isolates resistant to � non-�- lactam antibiotics tested) were of aboriginal people alice springs hospital, alice springs, northern territory, australia canadian fn – mrsa infections of inpatients in mo; patients had mrsa cultured � h after admission (community acquired); ca-mrsa patients were younger, more likely to have a rural residence, and more likely to be of fn ethnicity than ha-mrsa patients; % of ca-mrsa infections were in fn, and % of ha-mrsa infections were in fn (p � . ) five tertiary care hospitals in winnipeg, manitoba, saskatoon, saskatchewan, calgary, alberta, and edmonton, alberta, canada – outbreak of ca-mrsa infections; % of isolates were usa ; for - to - and - to -yr-old populations, the cumulative incidence was / , ; the outbreak accounted for % of reported mrsa cases in the province remote inuit community with population of , in nunavut, canada – rising rates of mrsa cases reported from clinics serving fn communities, reaching an incidence of to / , in areas of regional health authorities northern manitoba, canada – fn patients with mrsa infection or colonization; their isolates were more likely to be susceptible to erythromycin, clindamycin, tmp-smx, and ciprofloxacin, more likely to be resistant to mupirocin, and more likely to have a pulsotype similar to usa (cmrsa- ) than mrsa isolates from non-fn patients; % of fn inpatients vs % of non-fn patients had a clinical mrsa infection; fn patients were -fold-more likely to have a ca- mrsa infection than non-fn patients hospitals, inpatients, canada pis – % of ca-mrsa infections (cdc criteria) were of pis, while only % of the state population was pis in ; % of the infections studied were sstis health care facilities, hawaii , – % of samples from samoan or pi patients ( / ) vs % of non-samoan/non-pi patients ( / ) with s. aureus sstis were mrsa surveillance, family practice clinic, anchorage, ak – case series of ca-mrsa infections (i.e., no previous contact with hospital or nursing home); disproportionate no. of cases in people from the south pacific (e.g., tonga and western samoa) hospitals in brisbane, canberra, melbourne, and sydney, australia – review of pediatric s. aureus sepsis cases; isolates from all mrsa ( %) cases were cultured � h after admission, and all patients were pis or maori hospital pediatric icu in auckland, new zealand – case series of mrsa infections in inpatients with onset in the community (excluding nursing home residents, those hospitalized in the previous mo, or those with isolates cultured � h after admission); / ( %) patients were from american samoa tripler army medical center, hawaii chart review of all non-mdr mrsa isolates (susceptible to erythromycin, tetracycline, ciprofloxacin, gentamicin, rifampin, fusidic acid, and vancomycin) obtained in months; all patients were polynesians, and all had severe sstis clinical microbiology laboratory serving public hospitals, south western sydney area health service, australia – non-mdr mrsa infections; % ( / ) of non- mdr mrsa vs % ( / ) of mdr mrsa infections were in people born in samoa, tonga, or new zealand; % of non-mdr mrsa vs % of mdr mrsa infections were ca-mrsa (i.e., no hospitalization, surgery, or residential care in previous mo and no chronic disease) patients at emergency or dermatology departments at hospitals, south western sydney area health service, australia – % ( / ) of infections with non-mdr mrsa occurred in patients from the southwest pacific islands, while % of the general population was from these islands; / ( %) infections in pis were community acquired (i.e., cultured � h after admission and in patients with no health care contact in the previous mo and no chronic illness); isolates were the “pacific island strain” by pfge ipswich hospital, queensland, australia a abbreviations: fn, first nations; ltcf, long-term care facility; pi, pacific islander. david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ high-risk group for mrsa infection. higher rates of all s. aureus infections have also been noted for pacific islanders by investigators in new zealand and australia ( , ). the reasons for this association are not known. in hawaii, a pro- spective study of all mrsa infections diagnosed at four health care facilities from july to june found that among , patients with mrsa infection, % were infected by ca-mrsa. these infections were disproportionately more common among self-described pacific islanders than among asians. those investigators did not collect markers for ses in this cohort. however, they did note that pacific islanders had a higher poverty rating, larger families, and a lower proportion of college graduates than did asians ( ). more study is needed to determine why certain ethnic pop- ulations face a disproportionate risk of mrsa infection or asymptomatic colonization. incarcerated populations incarcerated populations in the united states are at a high risk of mrsa infections. many outbreaks have been reported in jails and prisons ( , , ), and in many urban jails, mrsa has become an endemic pathogen and the predominant etiology of cultured sstis ( , , , ). there have also been many case reports of detainees and recently released prisoners with mrsa infections ( , , , , , , ). molecular evidence has linked the mrsa isolates from correctional facilities to local ca-mrsa strains ( , , , ). in the only large-scale study of its kind, in to , the texas department of criminal justice found that mrsa infections occurred per , prisoner-years, a very high rate; among the risk factors identified were female gen- der, white race, jail (as opposed to prison) incarceration, and young age ( ). the higher risk demonstrated for younger inmates suggests an epidemiological pattern consistent with ca-mrsa ( ) in other populations. many detainees in urban jails are held for only brief periods of time and are often recidivists; this revolving door is poten- tially an amplifier of epidemic mrsa colonization in commu- nities with a high prevalence of recently jailed individuals and their contacts. in the united states, the incarcerated popula- tion increased from , in ( ) to , , in june ( ). approximately . million inmates were released from incarceration facilities in , most from local jails ( ). in , in every u.s. residents was incarcerated, but more than in ( . %) african american men aged to years were detained ( ). if jails are a common site of mrsa colonization, as they appear to be, this population and their contacts may face a high risk of mrsa colonization and infection. mrsa has been shown to be the predominant pathogen causing sstis among detainees in jails in many u.s. cities. a study of mrsa isolates causing infections in five county jails near san francisco demonstrated a dramatic rise in the per- centage of s. aureus sstis caused by mrsa, from % in to % in . there were two predominant mrsa clones, suggesting the spread of these clones in the jail or a common source of colonization among detainees ( ). among mrsa isolates obtained in to from infections of detainees in the san francisco county jail, usa first ap- peared in and rapidly became the predominant strain after . the number of mrsa infections rose each year, from in to in , although there was little change in the numbers of mssa infections each year. the majority of the strains were isolated from patients with sstis. clindamy- cin resistance was found for . % of mrsa isolates and did not significantly change over time ( ). in an -month period in to in the cook county jail in chicago, il, the largest single-site pretrial detention facility in the united states, mrsa was identified as the etiology of . % ( / ) of all cultured skin lesions and % ( / ) of all s. aureus skin infections ( ). at stroger hospital of cook county and its clinics in chicago in to , incarceration during the previous year was an independent risk factor for an mrsa ssti ( ). at the whatcom county jail in washing- ton, / ( %) sstis in were caused by mrsa ( ). in to , an outbreak of mrsa sstis was recog- nized at the los angeles county jail (lacj), the largest county jail system in the united states. from january to june , there were , mrsa skin infections reported; % were reviewed. the predominant isolates from the jail had ca-mrsa pfge pulsotypes ( ). the early diagnosis of some lesions ( % in and % in were diagnosed within days of booking) ( , ) may have reflected a high incidence of mrsa colonization in the community or, alter- natively, rapid transmission in the jail setting. further support- ing the former position, a mathematical model of mrsa in the lacj demonstrated that although � , ca-mrsa sstis were recognized in to , the inflow of infected detain- ees from the community may have fueled the epidemic ( ). the importance of fomite contamination with mrsa in jails is not known, but in a texas jail, investigators in found that / ( . %) fomites had recoverable mrsa; / tested mrsa isolates were usa isolates by pfge ( ). there have been few studies of nasal mrsa colonization in a prison or jail. in , . % ( / ) of inmates at a mis- sissippi prison were colonized with mrsa. there was a dis- proportionately high colonization rate for females ( . %) com- pared with males ( . %). the major risk factor identified for mrsa nasal colonization was residence in the prison for � days. longer-term detainees had a . % mrsa colonization rate, versus . % for those incarcerated for a shorter time. of isolates cultured from infected detainees, the vast majority were susceptible to non-�-lactam antibiotics, and pfge dem- onstrated three predominant clonotypes, suggesting a local focus of dissemination of mrsa among the detainees ( ). in a study of detainees admitted to a correctional ward of a hospital in maryland in to , % had either a clinical mrsa infection or colonization; female detainees were more likely to be colonized (relative risk [rr], . ). detainees from the baltimore city jail were more likely to be mrsa carriers than were detainees from other correctional institutions, with a very high carriage prevalence of %. the usa genotype constituted % of the mrsa isolates tested and was the most common genotype recovered ( ). at the baltimore city jail in , . % ( / ) of newly arriving detainees had mrsa nasal colonization; % of the recovered strains were usa or related types. surprisingly, only . % ( / ) of sstis identified in this population were caused by mrsa ( ). vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ outbreaks in prisons have been studied less often, but they have provided insight into possible risk factors and means of mrsa transmission among incarcerated populations. for ex- ample, a cdc-sponsored case-control study after an outbreak of cases of mrsa ssti in a mississippi prison in to demonstrated that % of the patients were female, while only % of the prison detainees were female. detainee pa- tients with an ssti caused by mrsa were more likely than controls to have helped an inmate or to have been helped by another inmate with dressing changes of wounds, to have lanced their own or other detainees’ boils, or to have shared personal items with other detainees ( ). poor personal hy- giene, measured by using a composite hygiene score, was blamed for an outbreak of mrsa sstis in to in a prison in missouri ( ). in to , the cdc investigated mrsa outbreaks in georgia prisons. a case-control study was performed for a -bed short-stay detention center, where cases of mrsa sstis occurred in . risk factors for infection included incarceration for more than days and outdoor work duty. despite improvements to hygiene, after a -month hiatus with no infections, more mrsa cases were detected in to ( ). a second georgia prison housed , inmates and had cases of mrsa infection in . a case-control study revealed the following risk factors: previous antibiotic use, self-draining of boils, skin laceration, washing clothes by hand, and arrival to the prison after . further surveillance re- vealed additional infections in april to february . despite the isolation of inmates with mrsa infections and the provision of a -day supply of chlorhexidine-based soap for all inmates, additional cases occurred in march to may ( ). these studies demonstrate that while some risk factors are understood, the control of mrsa in places of incarcera- tion may be a difficult task. in to , information on s. aureus infections and colonization was collected from the new york state prison system. in two prisons, mrsa nasal colonization was found for . % ( / ) of men and . % ( / ) of women; all mrsa isolates carried sccmec type iv, and / ( %) iso- lates were usa strains. among s. aureus isolates from infections of detainees occurring in january to june , . % ( / ) were mrsa isolates; of the mrsa infection isolates, . % ( / ) were pvl�, and . % ( / ) carried sccmec type iv, findings consistent with ca-mrsa strains. associations between an increased length of stay and the like- lihood of a pvl-positive mrsa infection were found for max- imum-security prisoners. among medium-security prisoners with s. aureus infections, both older age and longer length of stay were associated with a decreased likelihood of having an mrsa infection ( ). most reports of incarceration-related mrsa disease have been from the united states. however, in alberta, canada, an outbreak of usa mrsa infections in demon- strated that a history of recent incarceration was a signifi- cant risk factor for infection ( ). two five-person out- breaks of mrsa sstis were recorded for a -person correctional facility in hamilton, ontario, in and . all sstis were caused by usa strains that were pvl�, and there was proven contact among only some of the de- tainees, at least two of whom had shared a cell with a detainee who lanced the boils of others and one of whom had aids ( ). a large outbreak of skin infections caused by ca-mrsa strains was reported for a prison in uruguay, which was associated with a scabies infestation ( ). overall, poor hygiene is likely a major contributor to the problem of mrsa infections in places of incarceration, but there may be other risk factors for incarcerated populations that put them at a specific risk for exposure to mrsa outside jails and prisons. furthermore, if detainees are likely to become asymptomatic carriers of mrsa while in- carcerated, with jail and prisons serving as a reservoir, re- leased detainees may also spread mrsa to their families and other contacts. cystic fibrosis cystic fibrosis (cf) is a chronic disease resulting from one of many mapped mutations in the cystic fibrosis transmembrane conductance regulator (cftr) gene, which usually leads to progressive dysfunction in many organ systems, particularly the lung and respiratory tract. patients with cf suffer from recur- rent infections, bronchiectasis, and frequent respiratory tract colonization with antimicrobial-resistant bacterial pathogens, particularly pseudomonas aeruginosa and s. aureus. mrsa re- spiratory carriage and infection are becoming increasingly common among cf patients according to data from the cystic fibrosis foundation. in , only . % of cf patients had mrsa recovered from their respiratory tract; the prevalence increased to . % in and . % in ( , , ). some researchers have suggested that mrsa colonization is a poor prognostic sign in cf. during , in an epidemiological study of , children from north america with cf and s. aureus in their respiratory tract cultures, cf patients with mrsa had a lower mean forced expiratory volume in s (fev ), were more likely to be treated with an antimicrobial drug, and were more likely to be hospitalized than those with mssa infections. these children were likely colonized pre- dominantly by ha-mrsa strains ( ). a study from the cystic fibrosis foundation registry from to includ- ing , cf patients aged to years, controlling for severity of disease at baseline, common coinfections, and com- mon comorbidities, found that the fev decline was % more rapid among the , patients who developed new and persistent mrsa infection than among the noncolonized pa- tients with cf ( ). other researchers, using data for , patients in to from the epidemiologic study of cf, suggested that this association is not significant if one accounts for fev prior to mrsa colonization ( ). a prospective study is needed to definitively determine if there is a true association ( ). several studies have examined the relative burden of ca- and ha-mrsa strain types among strains isolated from screening cultures and infections of cf patients to assess the impact of the ca-mrsa epidemic in this population. cf patients at emory university in to were more likely to harbor an mrsa strain with inducible clindamycin resis- tance ( / ; %) than were non-cf patients ( / ; %) (p � . ) ( ). at washington university in st. louis, % of children with cf newly colonized with mrsa in to had pvl� mrsa strains. these children were more david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ likely to have an active pulmonary infection than children colonized with pvl-negative strains ( ). in chapel hill, nc, in to , / ( . %) cf patients were colonized by pvl� mrsa strains that carried sccmec type iv, while over- all, / ( . %) patients had at least one respiratory cul- ture that grew mrsa in this period ( ). a study from dallas and chicago compared mrsa isolates obtained from children with cf and children without cf in to . of the cf patient isolates, . % belonged to mlst clonal cluster (cc ) and carried sccmec type ii, both markers for ha-mrsa strains, and . % belonged to cc and carried sccmec type iv, both markers for ca- mrsa strains. in contrast, among mrsa isolates from non-cf patients, . % belonged to cc and carried sccmec type iv, and only % had ha-mrsa markers. isolates from cf patients were more likely to be resistant to clindamycin and ciprofloxacin. isolates from screening cultures compared with isolates from active infections did not differ in the likelihood of carriage of pvl genes, suggesting that pvl� isolates may not be more likely to cause disease in cf patients ( ). although there are few data, mrsa colonization overall and pvl� mrsa colonization in particular may be less com- mon among cf patients in europe than among cf patients in the united states. in italy, / , ( . %) cf patients at nine centers were colonized with mrsa in to . of the mrsa-colonized patients, % had isolates carrying sccmec type iv. mrsa strains of a single, unstated pfge type colonized patients; of these carried sccmec type iv, and none of the isolates carried pvl ( ; s. campana, personal communication). at nine centers in belgium in , % of cf patients carried mrsa strains, and % were genotypically related by pfge to “epidemic clones that are disseminated in belgian hospitals” ( ). in madrid, mrsa isolates from cf patients were obtained in to ; all the isolates were mdr and polyclonal, but of them were st isolates bearing sccmec type i and lacked the pvl genes ( ). all cf patients in northern ireland are tested every months for mrsa colonization; / were found to carry mrsa at some time during to . by using a three-step protocol requiring or courses of oral fusidic acid and rifampin followed, if necessary, by intravenous teicoplanin, investigators were able to decolonize of the cf patients; they all remained free of mrsa sputum colonization year later ( ). in summary, it appears that cf patients may be colonized with mrsa strains and that the rate is increasing. some are ca- mrsa strains, but the patients remain at as great a risk or are at a greater risk for colonization and infection by the ha-mrsa strains that predominate in their geographical region. the impor- tance of asymptomatic ca-mrsa colonization as a predictor of disease in this population remains unclear. military populations healthy military populations and their families are another group who may be at risk for ca-mrsa infection and colo- nization ( ). for example, among new military recruits reporting for training in texas in , ( %) carried mrsa in their nares; most had at least one risk factor for ha-mrsa. after to weeks of training, of these soldiers ( %) developed sstis, although ( %) were no longer colonized with mrsa. four recruits became newly colonized with mrsa while in training ( ). this suggests that many recruits were transiently colonized and that colonization predisposes one to disease. in a follow-up study of , u.s. soldiers in texas in , ( . %) were colonized with mrsa ( ). of isolates from these soldiers, % were usa strains. among the , soldiers who completed the study, had an ssti caused by mrsa, % of which were caused by usa strains ( ). among active military service members deployed to iraq in march to july , were diagnosed with a carbuncle, furuncle, boil, or abscess, as determined by a retrospective review of administrative records. of isolates from the service mem- bers, ( %) underwent culture; / ( %) grew s. aureus, and of these isolates, / ( %) grew mrsa ( ). many other case series from various locations in the united states demonstrate how widespread ca-mrsa infections are among military populations. after a large outbreak of mrsa sstis in to among military recruits at a training facility in virginia, of healthy workers who had direct contact with the recruits, . % ( / ) carried mrsa in their nares ( ). at a military facility in washington state in to , of adult patients presenting with mrsa infections or carriage, % ( ) were ca-mrsa infections (i.e., from patients presenting as outpatients or cultured � h after admission and with no hospitalization, surgery, or use of anti- biotics in the previous months and no cystic fibrosis, i.v. drug use, hiv infection, diabetes mellitus, cirrhosis, or hemodialy- sis) ( ). among patients hospitalized with mrsa infections on a military base in honolulu, hi, in to , % had a ca-mrsa infection (by the cdc case definition) ( ). mrsa was the leading cause of cultured skin abscesses at eds at two military hospitals in texas in to ( ). the burden of ca-mrsa disease may be increasing among active-duty and retired military personnel and their depen- dents. at the naval medical center in san diego, in a retro- spective analysis of mrsa disease isolates obtained in to , the incidence of ca-mrsa (i.e., patients with no hos- pitalizations in the previous months and if mrsa was cul- tured from an isolate from an outpatient or within h of hospital admission) infections rose quickly, from % of all mrsa infections in to to % in to ( ). military recruits, active-duty personnel, and their contacts may be exposed to a common reservoir of ca-mrsa ( ). the risk factors for ca-mrsa colonization may be analogous to those in local jails, including crowded living conditions and suboptimal personal hygiene at times of intensive training. in a review from a veterans affairs hospital in houston in to , investigators studied cultures from all sstis, which by patient self-report were related to “spider bites” and required surgical intervention. all cultures meeting these two criteria grew s. aureus, and % ( / ) of the s. aureus isolates were mrsa isolates ( ). outside the united states, few studies of mrsa coloniza- tion among military personnel have been published. among greek air force employees in to , ( . %) had nasal colonization with mrsa, and of the had no previous known exposure to the health care system ( ). vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ hiv infection/aids hiv infection has been determined to be an independent risk factor for ca-mrsa infection and colonization in some settings, particularly after ( , , ). for example, / ( %) isolates from sstis cultured at an hiv clinic in dallas county, tx, in to grew mrsa ( ). in to , at a clinic in houston serving , hiv-infected patients, % of consecutive cultures of isolates from sstis with a recoverable organism grew mrsa ( ; g. w. krucke, personal communication). of hiv patients at a clinic in dallas in , ( . %) had mrsa nasal colonization, of whom carried usa or usa strains. independent risk factors for mrsa carriage were prior infection with mssa or mrsa (or, . and . , respectively), no current or recent antimicrobial drug therapy (or, . ), and a low mean cd cell count ( versus cells/mm ; or, . ). interestingly, none of the patients taking tmp-smx prophylaxis for pneu- mocystis jirovecii pneumonia were colonized with mrsa ( ). in to at the naval medical center in san diego, / ( . %) hiv-infected patients had an ssti caused by ca-mrsa (by cdc criteria), and patients with a ca-mrsa ssti did not differ significantly in age, gender, or race from the overall cohort of hiv-infected patients. ca-mrsa patients did not have advanced hiv disease. they had a mean cd � cell count of cells/mm , and the hiv viral load was � , copies/ml in % of the patients; % of the patients were receiving antiretroviral therapy at the time of their infections ( ). a study performed in to demonstrated a steady rise in the incidence of mrsa infections among pa- tients at an adult hiv clinic in san diego from to per patients in a -month period ( ). at a clinic in maryland, the incidence of ca-mrsa infections among hiv patients was . cases per , person-years in . mrsa infection was associated with a low cd � count, a high hiv viral load, recent use of systemic antibiotics, and a history of syphilis. as in texas, no ca-mrsa infections occurred among the pa- tients taking tmp-smx prophylaxis ( ). hiv infection was a risk factor for mrsa colonization among s. aureus-colo- nized individuals admitted to a hospital in atlanta, ga, in ( ). in to at a clinic in philadelphia, ca-mrsa sstis (by the cdc definition except that a previous isolation of mrsa was not considered to be an ha-mrsa infection) were identified among hiv-infected patients, with the number increasing from in to in ; . % had a cd cell count of � cells/mm , and % had an hiv viral load of � , copies/ml ( ). at the cook county hospital and its associated clinics in chicago, ca-mrsa and ca-mssa (criteria for community-associated infections were not pro- vided) sstis were retrospectively reviewed for to , and population-based incidence estimates were calculated. hiv-infected patients were more likely to have ca-mrsa sstis than were non-hiv-infected patients (incidence of versus / , population; rr, . ; p � . ) ( ). hiv-infected patients are at an increased risk not just for mrsa colonization but also for any s. aureus colonization; the reasons for this association are not known. among recre- ational drug users in new york city in to , % of hiv-infected subjects and % of uninfected subjects were colonized with s. aureus. when isolates from subjects were cultured at -month intervals, the likelihood of new s. aureus nasal colonization was twice as great among hiv-infected sub- jects as that among non-hiv-infected subjects (hazard ratio, . ; % ci, . to . ). furthermore, among the nine subjects with mrsa colonization in the first months, seven were hiv infected ( ). further research is needed to determine which hiv-in- fected patients are at the greatest risk for ca-mrsa coloni- zation and infection. in new york city in to , hiv-infected patients and matched non-hiv-infected pa- tients (including close contacts of the hiv-infected subjects) with no hospitalization in the previous year were tested for nasal or axillary mrsa carriage during at least one of three monthly assessments and prospectively monitored. hiv-in- fected patients who had a mean cd � cells count of cells per mm were more likely than controls to have mrsa car- riage ( . % versus . %; p � . ) and were more likely to develop an mrsa infection ( versus ). hiv-infected pa- tients were more likely than controls to have any s. aureus colonization ( . % versus . %; p � . ). mrsa infec- tions were associated with previous antibiotic use (p � . ) ( ). the association of ca-mrsa and hiv may be greater in certain regions of the united states than in parts of the world where ca-mrsa colonization is less common. for example, among hiv patients in rome, italy, the risk for a severe mrsa infection was independently associated with exposure to the health care system; among hiv-infected patients with a severe mrsa infection in to , only infection was caused by ca-mrsa (by the cdc definition) ( ). in omaha, ne, / tested hiv-infected patients at a single clinic had nasal or perigenital mrsa colonization; these cul- tures were processed without enrichment broth, and this may have decreased the sensitivity of the cultures ( ). the finding of predominantly ha-mrsa infections among hiv-infected patients in italy and in nebraska contrasts with data from studies in many parts of the united states. this difference may indicate variable susceptibility to mrsa or, more likely, the geographic variation in ca-mrsa infections and coloniza- tion. men who have sex with men some researchers have suggested that msm in the united states and canada face an increased risk of mrsa coloniza- tion and infections ( , , , , ). for example, among the mrsa isolates obtained from patients with infec- tions in san francisco in to , infection caused by a usa strain carrying resistance plasmid pusa (see dis- cussion above) was most common among patients residing in eight zip code regions with a high proportion of same-sex male couples. among patients who had an mrsa infection, self- identification as a man who has sex with men was associated with an mdr usa infection. the authors of that study speculated that the mdr usa strain may be sexually transmitted ( ). at a clinic in boston where approximately % of patients were msm by self-report, . % ( / ) of patients in to had mrsa recovered from the nares, the perianal region, or a skin infection, and % ( / ) of the isolates were usa strains. among enrollees, . % ( / ) david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ had an ssti at enrollment, and . % ( / ) of patients had an ssti during a -month period in to . any ssti, whether caused by mrsa or not, was strongly associated with previous perianal carriage of mrsa (or, . ; % ci, . to . ), prior skin infection (or, . ; % ci, . to . ), and crystal methamphetamine use (or, . ; % ci, . to . ). the authors of that study suggested that skin-to-skin contact and multiple sexual partners may predispose one to sstis caused by mrsa ( ). outside the united states, studies have not shown an ele- vated rate of mrsa carriage in msm. in toronto, for exam- ple, only . % ( / ) of msm had asymptomatic carriage of mrsa in the nares or rectum in ( ). no enrichment broth culture was utilized in the processing of culture swabs, which may have decreased their sensitivity compared with that of studies of many other populations. furthermore, the mrsa epidemic may not have been as widespread in canada in . more research is needed to assess the reasons for the spread of ca-mrsa in the msm population. veterinarians, livestock handlers, and pet owners domestic pets, livestock, wild birds, and other animals have recently been identified as carriers of mrsa in several coun- tries and settings (tables and ). the role of animals as vectors for human mrsa infection and colonization has not yet been fully characterized. it has been suggested that mrsa in animals may be a “humanosis”; this implies that mrsa generally originates from people and puts animals at risk for carriage and infection. further research is necessary to assess this hypothesis. mrsa isolates obtained from domestic ani- mals often belong to common human mrsa clonotypes ( ); in contrast, mrsa isolates obtained from livestock are often genetically distinct. livestock as a reservoir for human mrsa colonization and infection and the st sequence type. mounting evidence suggests that livestock, particularly pigs, may represent an im- portant reservoir for ca-mrsa strains that can colonize and infect humans in close contact with them ( , , , , ) (table ). st is the most commonly reported mrsa sequence type among large livestock in europe. st mrsa strains often carry genes coding for non-�-lactam antimicrobial resistance, including a plasmid-borne trimethoprim resistance gene, dfrk, identified in an isolate from a pig in germany ( ). these st isolates are often referred to as nontype- able by pfge because their genome is resistant to smai di- gestion ( ). the isolates carry sccmec type iv or v and typically lack pvl genes; several common spa types have been associated with these isolates. studies of asymptomatic mrsa colonization of a variety of farm animals have suggested that carriage rates vary widely. among healthy horses in slovenia in , no mrsa carriage was identified ( ); a similar finding was obtained for horses on farms in in the maritime provinces of canada ( ) and for military horses in austria (year of collection not indicated) ( ). in contrast, among horses attending a clinic in belgium in , . % ( horses) had nasal colonization with mrsa st strains of two spa types ( ). st was also isolated from poultry in belgium in ( ). in the netherlands in , mrsa coloniza- tion of pigs was identified in / ( %) tested farms. the st mrsa strains from this study also had a variety of spa types ( ). several studies have suggested high rates of asymptomatic colonization by st mrsa backgrounds among swine and their handlers, suggesting that frequent transmission occurs, although secondary human-to-human spread to close contacts appears to be rare ( ). moreover, clinical infections among exposed swine farm workers have been reported infrequently. in iowa, % ( / ) of swine and % ( / ) of farm workers in to carried st mrsa in the nares; no other mrsa genetic backgrounds were identified. younger swine were more likely to be carriers ( ; t. smith, personal communication). in austria in march , / ( %) pig farmers who attended a conference had mrsa nasal carriage, and all eight isolates examined had spa type t , a type asso- ciated with st strains ( ). among farm workers and their contacts on pig farms in belgium in , . % ( / ) had nasal or skin lesion colonization with mrsa. mrsa carriage was associated with close contact with pigs, dogs, and horses and, paradoxically, with the use of protective clothing. the mrsa isolates belonged to three spa types (t , t , and t ), but % (n � ) were t isolates. representative isolates of each spa type were found to share the st genotype ( ). in the netherlands in , � % of pig farmers were colonized with st mrsa, as were % of pigs destined for slaughterhouses; seven spa types were represented, and four predominated ( , ). in austria, of the , mrsa isolates from humans submitted to a ref- erence laboratory in january to may were st isolates. among these isolates, were obtained from clinical infections, were obtained from cultures to assess coloniza- tion status, and the source of was unknown. of the isolates from patients with information regarding animal exposure, were from pig farmers or their relatives, were from farmers with other animal exposures, and were from people who had no known animal contact. the percentage of st isolates increased in each year of the study and peaked at . % of submitted isolates in january to may ( ). invasive infection caused by st occurs but rarely. in italy, a pig farm worker developed pyomyositis caused by an mrsa st strain. a subsequent investigation of the farm employing the patient revealed colonization by st strains among of other swine workers and family members; st strains were isolated from seven dust samples from farrowing areas on the farm, suggesting a porcine origin of the strains ( ). although pvl genes have been generally absent from st strains, one report from sweden described them for isolates from two sstis occurring in previously healthy pa- tients in and . the strains had the t spa type, which has been widely reported among pvl-negative st strains ( ). another pvl� st mrsa isolate (spa type t and sccmec type v) was submitted to the national ref- erence collection of the netherlands in ( ). st mssa strains were also identified by colonization studies of pigs and pig farmers in france but not in a sample of non-pig farmers ( ), suggesting that mssa st strains, like mrsa st strains, are also most closely associated with pigs and pig farm workers. similarly, mssa st isolates colo- vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ t a b l e . st u di es of m r sa ca rr ia ge an d in fe ct io n in liv es to ck an im al s an d hu m an co nt ac ts , to a ni m al s y r of st u dy l oc at io n( s) m aj or fi nd in g( s) g en ot yp e( s) id en ti fi ed a r ef er en ce (s ) c hi ck en s b el gi u m c hi ck en s on fa rm s w it h cl oa ca l or na sa l m r sa co lo ni za ti on st - iv a or -v or no nt yp ea bl e sc c m ec /t , st - ii i/ t b el gi u m m r sa is ol at ed fr om cl oa ca or na sa l ca vi ty of br oi le r ch ic ke n sp a ty pe t , st c ow s – h u ng ar y m ilk sa m pl es fr om co w s w it h su bc lin ic al m as ti ti s an d to ns ill ar sw ab cu lt u re of m ilk in du st ry w or ke r gr ew m r sa id en ti ca l by p f g e st - iv a/ t , p v l ne ga ti ve h or se s – m ic hi ga n h or se s w it h m r sa w ou nd in fe ct io ns af te r pr oc ed u re s; he al th ca re w or ke rs ha d na sa l co lo ni za ti on w it h m r sa st ra in s re la te d by p f g e n ot st at ed – o nt ar io , c an ad a a t a ve te ri na ry co lle ge an d on ho rs e fa rm s, m r sa is ol at es w er e ob ta in ed fr om sc re en in g cu lt u re s of th e na re s of ho rs es an d pe rs on ne l as w el l as fr om si te s of cl in ic al in fe ct io n; th is yi el de d m r sa is ol at es fr om ho rs es an d pe rs on ne l; a ho rs e fa rm w or ke r ha d th e so le hu m an in fe ct io n; he ha d an m r sa ss t i co m pl ic at in g a ta tt oo w ou nd ; c m r sa - w as is ol at ed fr om hi m , an d m r sa is ol at es id en ti ca l by p f g e w er e re co ve re d fr om ho rs es u nd er hi s ca re c m r sa - by p f g e (r el at ed to u sa , ca rr yi ng sc c m ec ty pe iv , sp a ty pe t , p v l ne ga ti ve ) ac co u nt ed fo r / ( % ) is ol at es fr om pe op le an d / ( % ) of is ol at es fr om ho rs es o nt ar io , c an ad a a fo al w it h m r sa ar th ri ti s an d om ph al op hl eb it is an d it s da m w it h m r sa na sa l co lo ni za ti on w er e ad m it te d to a ve te ri na ry ho sp it al ; he al th ca re w or ke rs w ho ca re d fo r th e fo al de ve lo pe d m r sa ss t is , an d / ( . % ) pe rs on ne l ha d ei th er na sa l or gr oi n co lo ni za ti on w it h m r sa p v l ne ga ti ve an d id en ti ca l by p f g e , c m r sa - (r el at ed to u sa ) l iv er po ol , u ni te d k in gd om / ( % ) ho rs es at a ho sp it al ha d m r sa na sa l or sk in ca rr ia ge ; ot he rs ha d cl in ic al m r sa in fe ct io ns is ol at es fr om ho rs es ha d p f g e ty pe s, al l w er e p v l ne ga ti ve h er tf or ds hi re , u ni te d k in gd om m r sa in fe ct io ns in ho rs es at a ve te ri na ry co lle ge ho sp it al st - iv a/ t , p v l ne ga ti ve ; a . l oe ffl er , pe rs on al co m m u ni ca ti on – ir el an d h or se s at ve te ri na ry cl in ic s an d a ho sp it al w it h m r sa w ou nd in fe ct io ns or “a bd om in al gr an u lo m a” ; ho rs e st ra in s re la te d to th os e re co ve re d fr om th e na re s of at te nd an t ve te ri na ry pe rs on ne l u nr el at ed to kn ow n cl in ic al is ol at es he ld by a la rg e ir is h re fe re nc e la bo ra to ry , al l w it h id en ti ca l or cl os el y re la te d p f g e ty pe s – o nt ar io , c an ad a, an d n ew y or k f ar m in o nt ar io w it h m r sa co lo ni za ti on in / ( % ) ho rs es an d / ( % ) pe rs on ne l; fa rm in n ew y or k w it h m r sa co lo ni za ti on of / ( % ) ho rs es an d / ( % ) pe rs on ne l n o in fo rm at io n n ot st at ed v ie nn a, a u st ri a ho rs es w it h m r sa w ou nd in fe ct io ns st - iv a/ t n ot st at ed l ow er sa xo ny , g er m an y f oa l w it h m r sa si nu si ti s st - v /t – o nt ar io , c an ad a / , ( . % ) ho rs es u po n ad m is si on to a te ac hi ng ho sp it al ha d na sa l m r sa co lo ni za ti on n o in fo rm at io n b el gi u m / ( . % ) ho rs es fr om b el gi u m , th e n et he rl an ds , f ra nc e, an d l u xe m bu rg se en at a cl in ic ha d m r sa na sa l co lo ni za ti on st - iv a/ t (n � ), st - v /t (n � ) , an d st - iv a/ t (n � ) david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ – v ie nn a, a u st ri a m r sa in fe ct io ns am on g ho rs es at a u ni ve rs it y ve te ri na ry ho sp it al ; / ( . % ) pe rs on ne l ha d m r sa co lo ni za ti on h or se st ra in s w er e st - iv a/ t (n � ) , st - iv d/ t (n � ), an d st - iv a/ t (n � ) , an d al l w er e p v l ne ga ti ve ; pe rs on ne l st ra in s w er e st - iv a/ t (n � ) , st - iv d/ t (n � ), st - iv a/ t (n � ) , an d st - iv h/ t , an d al l w er e p v l ne ga ti ve – u ni te d k in gd om m r sa is ol at es fr om cl in ic al in fe ct io ns of ho rs es sp a- c c (n � ) or re la te d to e m r sa - (n � ) ; sp a ty pe s in cl u de d t , t , t , an d t p ig s n ot st at ed f ra nc e / ( . % ) pi g fa rm er s ca rr ie d m r sa in th e na so ph ar yn x; no ne of no nf ar m er co nt ro ls m at ch ed by ag e, se x, an d co u nt y of re si de nc e ca rr ie d m r sa st (n � ) , st (n � ) , st (n � ) , an d st (n � ) , c hi na m r sa is ol at ed fr om du st sa m pl es on / ( % ) pi g fa rm s in si ch u an p ro vi nc e st / t or st /t , al l p v l ne ga ti ve c hi na m r sa is ol at ed fr om na re s of / ( . % ) pi gs an d / ( % ) pi g fa rm w or ke rs in c hi ne se pr ov in ce s; no ne of ca tt le , ca tt le w or ke rs , or sl au gh te rh ou se w or ke rs ha d na sa l m r sa ca rr ia ge st / t (n � ), st / t (n � ), an d st /t (n � ) , al l p v l ne ga ti ve – n et he rl an ds fa m ily m em be rs on a pi g fa rm (f ar m a ) co lo ni ze d w it h id en ti ca l m r sa st ra in s; at a u ni ve rs it y m ed ic al ce nt er , an ot he r fa rm er , a ve te ri na ri an , hi s so n, an d hi s so n’ s nu rs e ca rr ie d th e sa m e st ra in as ab ov e- de sc ri be d fa m ily ; / ( . % ) pi gs on fa rm a ha d pe ri ne al ca rr ia ge of th e sa m e m r sa st ra in ; at a m ee ti ng of re gi on al pi g fa rm er s, / ( % ) w er e co lo ni ze d w it h m r sa in th e th ro at an d/ or no se n on e ty pe ab le by p f g e ; sp a ty pe t , t , or t n et he rl an ds a w om an w it h m r sa m as ti ti s an d he r da u gh te r ha d m r sa na sa l co lo ni za ti on ; fa m ily m em be rs an d co w or ke rs on he r pi g fa rm ha d m r sa th ro at or na sa l co lo ni za ti on , an d / ( % ) pi gs on th e fa rm ha d th ro at , na sa l, or pe ri ne al co lo ni za ti on a ll is ol at es w er e st - v /s pa t , ag r ty pe , an d p v l an d t ss t ne ga ti ve n ot st at ed l ow er sa xo ny , g er m an y m r sa co lo ni za ti on in pi g fr om a ve te ri na ry m ed ic al sc ho ol st - v /t – n et he rl an ds / ( % ) pi gs in sl au gh te rh ou se s ha d m r sa na sa l co lo ni za ti on ; tr an sm is si on of m r sa bo th pr io r to ar ri va l an d at sl au gh te rh ou se s w as lik el y st w it h sc c m ec ty pe ii i (n � ) , iv a (n � ), or v (n � ); sp a ty pe s in cl u de d t , t , t , t , t , t , an d t si ng ap or e / ( . % ) pi gs u se d in ex pt l re se ar ch , / ( % ) pi gs in a sl au gh te rh ou se , an d / ( % ) st af f w or ke rs at an ac ad em ic ho sp it al ’s re se ar ch fa ci lit ie s ha d m r sa na sa l co lo ni za ti on is ol at es fr om pi gs w er e st - v ; fr om a pi g an d fr om a sc ie nt is t w er e st -i v n et he rl an ds / ( % ) pi gs on / ( % ) fa rm s ha d m r sa na sa l co lo ni za ti on ; m r sa -c ol on iz ed pe rs on ne l ha d st ra in s w it h th e sa m e ge no ty pe as th os e of pi gs on th ei r re sp ec ti ve fa rm s st - iv or -v /t , t , t , t , an d t , al l p v l ne ga ti ve d en m ar k s . au re u s na sa l ca rr ia ge in / ( % ) pi gs ; / ( % ) w er e m r sa , an d / ( % ) w er e m ss a a ll no nt yp ea bl e by p f g e ; sp a ty pe t (n � ) or re la te d t (n � ) , – d en m ar k p ig s te st ed af te r a pe rs on w or ki ng or liv in g on th e fa rm pr es en te d w it h c c m r sa (i .e ., sp a ty pe t , t , or t ) in fe ct io n or ca rr ia ge ; / ( % ) pi gs ha d na sa l ca rr ia ge of c c m r sa p ig s ca rr ie d c c , sp a ty pe t c on ti n u ed on fo llo w in g pa ge vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ t a b l e — c on ti n u ed a ni m al s y r of st u dy l oc at io n( s) m aj or fi nd in g( s) g en ot yp e( s) id en ti fi ed a r ef er en ce (s ) n et he rl an ds o n fa rm s, / ( % ) pi g fa rm er s an d th ei r fa m ili es ha d na sa l co lo ni za ti on w it h m r sa , an d ei th er pi gs ha d na sa l ca rr ia ge or fo m it es ne ar pi gs w er e co nt am in at ed w it h m r sa on / ( % ) fa rm s; on fa rm s w it h na sa l co lo ni za ti on in pe op le , an im al s an d pe op le ha d th e sa m e sp a ty pe n o in fo rm at io n – io w a an d il lin oi s in fa rm sy st em s, % ( / ) of sw in e an d % ( / ) of fa rm w or ke rs ha d m r sa na sa l ca rr ia ge m r sa is ol at es fr om an im al s an d w or ke rs w er e al l st - v , p v l ne ga ti ve ; t . sm it h, pe rs on al co m m u ni ca ti on n ot st at ed o nt ar io , c an ad a / ( . % ) pi gs on fa rm s ha d m r sa na sa l or re ct al co lo ni za ti on ; / ( % ) pi g fa rm er s ha d m r sa na sa l ca rr ia ge ; on fa rm s w it h hu m an co lo ni za ti on , co nc or da nt st ra in ty pe s w er e fo u nd in fa rm er s an d pi gs . % of pi g an d hu m an is ol at es ha d sp a ty pe t an d co u ld no t be ty pe d by p f g e ; % of pi g an d % of hu m an is ol at es w er e u sa n et he rl an ds m r sa ss t is in pi gl et s on a br ee di ng fa rm an d pi gs on a su pp lie r fa rm ; m r sa na sa l co lo ni za ti on in fa rm w or ke rs st - iv /t p or tu ga l pi gs an d ve te ri na ri an fr om a pi g fa rm ha d m r sa na sa l ca rr ia ge , an d at a se co nd fa rm , pi gs ha d m r sa na sa l ca rr ia ge f ir st fa rm ha d st - v /t , p v l ne ga ti ve ; se co nd fa rm ha d st -v /t , p v l ne ga ti ve r ab bi ts – p en ns yl va ni a ra bb it w it h an ea r in fe ct io n p v l � ir el an d a t a cl in ic , m r sa w ou nd cu lt u re fr om ra bb it an d m r sa na sa l ca rr ia ge in ve te ri na ry w or ke r b ot h is ol at es ha d th e sa m e p f g e ty pe – b er lin , g er m an y w ou nd in fe ct io n in a ra bb it at a ho sp it al st -i v , p v l ne ga ti ve r at s b el gi u m an d n et he rl an ds / ( . % ) bl ac k ra ts (r at tu s ra tt u s) tr ap pe d at pi g fa rm s ha d m r sa th ro at co lo ni za ti on st / t (n � ) an d st /t (n � ) , al l p v l ne ga ti ve a m r sa co m po si te st ra in ge no ty pe s ar e pr es en te d in th e fo llo w in g fo rm at : m l st ty pe -s c c m ec ty pe /s pa ty pe . f or ex am pl e, st - iv a/ t in di ca te s a m r sa st ra in th at w as st by m l st , ca rr ie d th e sc c m ec ty pe iv a el em en t, an d w as ty pe t by sp a ty pi ng . david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ table . studies of mrsa carriage and infection in domesticated and wild animals and human contacts, to a animals yr of study location(s) major finding(s) isolate characteristic(s)b reference(s) birds – pennsylvania parrot with chronic mrsa sinusitis pvl� – berlin, germany parrot with mrsa osteomyelitis st -iv, pvl negative cats ireland cat with mrsa uti no information – germany at a school of veterinary medicine, cats with utis and cat with an ear swab that grew mrsa st -iv/t , pvl negative – pennsylvania cat with an mrsa tooth abscess pvl� isolate – washington state and quebec, canada kittens at a rescue center with rhinitis and an employee there had mrsa nasal colonization; a cat had mrsa uti, and the genotypically same strain colonized the owner’s nose cmrsa- by pfge, sccmec type ii, pvl negative – berlin, germany cats at a hospital, with mrsa otitis and with mrsa wound infections st -iv, pvl negative (n � ); barnim strain by pfge, sccmec type iv, pvl negative (n � ) – pennsylvania clinical syndromes did not differ when mssa and mrsa isolates from cats (among , cats treated) at a veterinary medical center were compared tested isolates had related pfge types; all carried sccmec type ii not stated germany pet cat with pharyngeal mrsa colonization; genotypically identical strain caused recurrent sstis in its owner st -iv/spa t – ireland and united kingdom cats with mrsa infections emrsa- strain by pfge; spa types included t , t , t , and t dogs not stated united kingdom, various locations dogs and cats with mrsa isolated from them / isolates tested were emrsa- (n � ) or emrsa- (n � ), common pulsotypes in human infections south korea mrsa isolates obtained from dogs at a veterinary hospital, with from catheters, from nares, from conjunctiva, from recurrent pyoderma, and from a surgical wound infection all isolates were mdr; none were susceptible to quinolones, gentamicin, or tobramycin – pennsylvania among , dogs and , cats admitted to a university veterinary hospital, animals had s. aureus isolated from them; / were mrsa isolates obtained from dogs, cats, and unknown animals; isolates were from the skin (n � ), ear canal (n � ), genitourinary tract (n � ), respiratory tract (n � ), or another site (n � ) minority of isolates susceptible to clindamycin ( %), erythromycin ( %), or fluoroquinolones ( %) liverpool, united kingdom dogs with mrsa infections, including joint infection, wound infection, and pleuropneumonia; of the had mrsa nasal and fecal carriage; a veterinary student who cared for dog also carried mrsa all isolates were emrsa- by pfge and pvl negative – ireland dogs at veterinary clinics or a hospital with mrsa isolation, wound (n � ) and nares (n � ); veterinary personnel were also tested for nasal colonization pfge types of isolates from animals and personnel were common in an irish reference collection of isolates from human infections london, united kingdom / ( %) dogs at a veterinary hospital had nostril (n � ) or buccal mucosa (n � ) mrsa colonization; / personnel had mrsa colonization when tested at the same anatomical sites animal isolates and / human isolates were emrsa- by pfge ; a. loeffler, personal communication – germany dogs with mrsa isolated from them at a school of veterinary medicine; sources were fistula (n � ), urine (n � ), implant (n � ), wound swab (n � ), joint puncture (n � ), and skin swab (n � ) all isolates were st -iv/t , pvl negative missouri a pet dog carried a strain identical by pfge to that found in recurrent surgical wound infections of a man and cellulitis in a woman, his owners; the dog was likely a reservoir after colonization from his owners no further information netherlands a dog and its owner, a health care worker, carried mrsa with a pfge type identical to that of isolates from a nursing home mrsa outbreak and identified in a dog no further information – utrecht, netherlands dogs with mrsa infections, wound infection (n � ) and flank fistula (n � ) pfge pulsotypes continued on following page vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ nized two pig farmers in holland and were also isolated from the blood of three elderly hospitalized patients, suggesting again that it may be a virulent clone in humans ( ), at least occasionally. mrsa genetic backgrounds other than st have likely also been transmitted between farm animal handlers and live- stock (table ). for example, at meat markets and livestock farms in taiwan in to , mrsa isolates were iso- lated from fomites and were isolated from the nares of workers; the most common strain types were st , st , and a single-locus variant of st ( ). transmission among swine and swine farm workers of st mrsa strains and the isolation of st strains among mrsa disease isolates from other patients have been studied most carefully in the netherlands. at a hospital in a region of the country with , pig farms, screening of health care workers and high-risk individuals who were hospitalized was routinely performed in to . seventy-three colonized individuals were identified, . % of whom ( individuals) carried “nontypeable” mrsa presumed to be st ( , ); all of the nontypeable strains were identified in to . in july to december , a period when a history of direct exposure to pigs or veal calves triggered a screening nasal culture, patients with pfge-nontypeable mrsa car- riage were identified, % of whom had previous exposure to pigs or calves. among mrsa carriers with pfge-nontypeable strains, clinical infection was less common ( %) than among carriers of pfge-typeable strains ( %), again suggesting that st may not be as virulent as other genetic backgrounds ( ). among , health care workers in the netherlands, mrsa colonization was -fold higher ( . %) among those reporting contact with pigs and veal calves than among those without such contact ( . %), although this difference was not significant (the time when the study was performed was not stated) ( ). at a dutch hospital in to , % of patients and health care workers from whom mrsa was iso- lated likely acquired their isolate from animals. individuals table —continued animals yr of study location(s) major finding(s) isolate characteristic(s)b reference(s) – pennsylvania dogs with mrsa infections different pfge types, all pvl� not stated united kingdom pet therapy dog with mrsa colonization in pooled culture of nose, scalp, and interdigital folds of paws; likely acquired colonization during visit to human health care facility; other therapy dogs were not colonized related to emrsa- , a common pfge type among hospitalized patients in the united kingdom – pennsylvania, new york state, and ontario, canada reports of a dog with a postoperative mrsa ssti, and / ( %) personnel were colonized with the same strain; a dog had an mrsa surgical wound infection, another dog was colonized in the same facility, and / ( %) clinic personnel carried the same strain; a dog had mrsa infection after ocular surgery and was colonized with the same strain as his owner; and a dog with an mrsa uti had an owner who was colonized with same strain all isolates were cmrsa- , sccmec type ii, and pvl negative not stated geesthacht, germany a dog with an mrsa ssti st -v/spa t not stated hong kong, china . % ( / ) of dogs tested had mrsa nasal colonization sccmec type iv (n � ), type iv new variant (n � ), and type iiib (n � ), all pvl negative , – berlin, germany dogs at a hospital with mrsa isolated from them; anatomical sites were wounds (n � ), dermatitis (n � ), otitis (n � ), and cystitis (n � ) st -iv (n � ), st (n � ) with “untypeable” sccmec and “related to the barnim clone” with sccmec type iv (n � ); all isolates were pvl negative – adelaide, south australia mrsa was obtained from cultures of / skin lesions in dogs at a veterinary clinics; / healthy dogs had skin colonization with mrsa no information ; m. barton, personal communication – ireland and united kingdom mrsa isolates from clinical cultures taken from dogs % identical or closely related to emrsa- by pfge; spa types included t , t , t , t , t , t , t , t , and t (the t isolates were st by mlst) , other ireland a seal with an mrsa culture from a lymph node no information united states a premature elephant calf with mrsa ssti; / previously healthy caretakers in contact with the calf had probable or confirmed mrsa sstis isolates from the calf (n � ) and from caretakers (n � ) were usa – berlin, germany a turtle and a guinea pig with mrsa dermatitis at a hospital both isolates were st -iv, pvl negative a uti, urinary tract infection. b mrsa composite strain genotypes are presented in the following format: mlst type-sccmec type/spa type. for example, st -iva/t indicates a mrsa strain that was st by mlst, carried the sccmec type iva element, and was type t by spa typing. david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ with animal contact were responsible for the � -fold annual increase in the rate of mrsa isolation during this period ( ). in the months after the introduction of more intensive surveillance programs in july , � % of all mrsa strains obtained by the national reference center for mrsa in the netherlands were nontypeable and presumably st strains ( ). in , the percentage of mrsa strains that were nontypeable increased to . % ( / ), with % of these isolates having spa type t or t ( ). in addition to the risk posed to farmers and others working with animals, the general population may be at risk for expo- sure to mrsa carried by livestock from poor hygienic prac- tices at petting zoos ( ). this suggestion requires further investigation. veterinary practice as a risk factor for the transmission of mrsa between animals and humans. reported rates of asymptomatic mrsa colonization have varied among animals tested at veterinary facilities (tables and ). among , horses admitted to a veterinary teaching hospital in ontario, canada, in to , ( %) were colonized with mrsa; risk factors for colonization included antimicrobial use in the previous days, previous mrsa colonization or infection, known mrsa colonization or infection in the past on the farm of origin, admission to the hospital’s surgery service, or being in a neonatal intensive care unit ( ). among dogs admitted to a canadian veterinary teaching hospital in , / ( . %) carried mrsa recovered from the nares, axilla, and rectum ( ). several studies suggested that mrsa strains may be trans- mitted between humans and animals in the veterinary setting ( , , , ) (table ). the human and animal strains share common genetic backgrounds and were closely related; few differences were identified when comparing the dna se- quences of selected genes of mrsa isolates sharing genetic backgrounds from humans and horses ( ). more data are needed to determine if there are genetic differences in mrsa isolates that may be responsible for specific adaptation for the colonization of animals or humans. veterinarians, particularly those caring for large animals, have been identified as a high-risk group for asymptomatic mrsa carriage, likely because of their close animal contact. among dutch veterinary doctors and students with a his- tory of contact with livestock, a high prevalence ( . %) of mrsa colonization was documented (the time when the study was performed was not stated) ( ). at a veterinary confer- ence in in baltimore, md, . % ( / ) of tested at- tendees carried mrsa in the nares, including . % ( / ) of personnel caring for large animals ( ). at an international equine veterinary conference in in san antonio, tx, . % ( / ) of attendees tested carried one of three pulso- types of mrsa (usa , usa , or usa ). risk factors for mrsa carriage included a history of caring for a horse with an mrsa infection in the previous year, the attendee having had an mrsa infection in the past year, and self-reported failure to wash hands between farms or between handling of infected animals ( ). at an international conference of vet- erinarians in denmark in , . % ( / ) carried mrsa in the nares or the throat; of the recovered mrsa isolates were likely st isolates. mrsa carriers came from nine countries ( ; m. wulf, personal communication). this trend was not observed for the czech republic, where, at a veterinary conference in , only . % ( / ) of screened attendees carried mrsa ( ). similarly, at a university small-animal veterinary clinic in scotland, / ( . %) person- nel had nasal carriage of mrsa; both isolates were emrsa- by pfge analysis, a common strain among human nosocomial infections ( ). mrsa and meat or milk sold for human consumption. in studies from three continents, mrsa has been isolated from retail meat products ( ), from milk and meat samples ( , , , ), and from meat industry workers. in the neth- erlands, mrsa was isolated from of raw beef and pork samples from retail meat stores in . one isolate was a usa strain, and the other was nontypeable by pfge using smai digestion. this isolate may have been an st strain, although sequence typing was not performed ( ). in to , / , ( . %) raw retail meat samples in the neth- erlands had recoverable mrsa. analysis of spa types sug- gested that % of the recovered isolates were st isolates ( ). in austria, / raw meat products tested carried mrsa with spa type t (likely st ) (the time when the study was performed was not stated) ( ). the testing of retail meat samples from grocery stores in baton rouge, la, in revealed s. aureus on . % of pork and % of beef samples. mrsa was isolated from % ( / ) of the meat samples. the mrsa strains belonged to the usa or usa pulsotype ( ). there is no current indication that consumers face a risk of mrsa colonization or infec- tion from this source, although studies have not been un- dertaken to assess this specifically. further research is war- ranted to determine if contamination arises from the colonization of animals or of meat handlers. household pets. although some researchers have suggested that household pets may be an important reservoir for mrsa in the community, there have been few explicit data (table ). the transmission of ha-mrsa strains among pets and own- ers did occur in the pre-ca-mrsa era ( ), and after , ca-mrsa strain transmission ( , ), including usa ( ) and st ( ) strains, has been reported. among s. aureus isolates from cats treated at a clinic in philadelphia in to , all mrsa strains tested carried sccmec type ii, a molecular characteristic of ha-mrsa strains from people ( ). this finding suggests that cats may serve as a reservoir of mrsa in humans. in hong kong, only of tested dog owners both were colonized with s. aureus and owned a colonized dog. mrsa strains were isolated from . % of the dogs and from . % of the dog owners, but only one dog-owner pair was concordant in mrsa colonization status. furthermore, only / of the dog-owner s. aureus iso- late pairs shared pfge types ( ), implying that the transmis- sion of s. aureus between dogs and their owners was relatively infrequent despite the high mrsa carriage rate. some studies have not found any colonization among surveyed pets, for example, among healthy dogs in europe ( ). despite this, pets have been anecdotally implicated as a source of human infection caused by mrsa. one outbreak of mrsa in a family was linked to a pet cat. the clearance of st mrsa colonization in a family member with furunculo- vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ sis did not occur until systemic antimicrobial drug therapy was administered to the cat, which was colonized with the same strain ( ). more research is needed to assess the importance of pets as a reservoir of mrsa in the home and to what degree s. aureus is a zoonosis ( ). few data on the use of antimicrobial drugs among pets in the united states have been collected ( ); the overuse of these drugs may increase the risk of mrsa carriage in pets. clinical manifestations of ca-mrsa patients with sstis purulent sstis caused by ca-mrsa strains are the most common clinical manifestations of ca-mrsa ( , , ). an uncomplicated ca-mrsa ssti typically presents as an abscess that may resemble a spider bite filled with purulent material ( ). among adults with an abscess and surrounding erythema, the presence of a central black eschar had a positive predictive value of % and a negative predictive value of % for an mrsa isolate ( ). ca-mrsa abscesses can be found in diverse anatomical locations, including the breast ( , , ), vulva ( ), hand after clenched-fist injury ( ), and neck ( , ). however, sstis can vary in appearance and can also present as folliculitis, paronychia, furuncle, felon, cel- lulitis with drainage ( ), or lymphadenitis ( ). except for the distinctive appearance noted above, mrsa sstis cannot be distinguished from sstis caused by other agents, including mssa ( , ), on clinical grounds. small studies have suggested that the recurrence of ca- mrsa sstis is common after treatment. in dallas, a recur- rent ca-mrsa ssti was documented at a distinct anatomical site within years of the index ca-mrsa infection in / ( %) hiv-infected patients ( ). a recurrence of to ca-mrsa (i.e., onset outside the health care setting) sstis at a distinct anatomical site occurred among of adult hiv- infected patients in chicago in to ; the intervals between index lesions and recurrences were not stated ( ). among msm in new york city who presented with a ca-mrsa (i.e., onset in the community) ssti, % had a recurrence within months after the resolution of the initial infection. recurrence rates among those receiving mrsa- appropriate and mrsa-inappropriate initial antibiotic therapy ( / versus / ) were similar ( , ). among patients with a ca-mrsa ssti presenting to a new york city clinic in to , % had one recurrence and % had more than one recurrence within months; the median time to recur- rence was month. the likelihood of recurrence was not significantly different among hiv-infected patients, recipients of tmp-smx prophylaxis, individuals with mrsa nasal colo- nization, or recipients of mupirocin for nasal decolonization ( ). at a boston clinic at which approximately % of pa- tients self-identified as being msm, in a -month period in to , . % ( / ) of patients developed an ssti: / ( %) of the sstis were cellulitis, and / ( %) were furuncles. of the sstis, % ( / ) were cultured, and / ( %) grew mrsa. of those with an ssti, % ( / ) de- veloped a recurrence; culture data from recurrent lesions were not reported, so the proportion of recurrent lesions caused by mrsa was unknown. the authors of that study did not report whether antibiotics chosen for the treatment of the initial sstis were known to be active against the isolates obtained from the initial sstis ( ). sstis caused by mssa also recur but less frequently than those caused by mrsa. among detainees at the cook county jail in chicago in to , % of patients with an mrsa ssti and . % of patients with an mssa ssti had a recur- rence within months ( ). among hiv-infected patients with a ca-mrsa (cdc criteria) ssti in to at an hiv clinic in san diego, ( %) had a recurrent ssti at a distinct anatomical location a median of months after the index lesion. culture results were available for only some re- current lesions; of patients with a ca-mrsa index ssti and a recurrence, ( %) had a culture-confirmed ca-mrsa ssti recurrence. recurrence was associated with an hiv viral load of � , copies/ml (or, . ; p � . for patients with a viral load of � , copies/ml), and there was a trend for an increased risk of recurrence if an incision-and-drainage proce- dure was not performed for the index ca-mrsa ssti (or, . ; p � . ) ( ). why recurrent ca-mrsa sstis are common is not known. immunity after an initial mrsa ssti would seem to be absent in patients with a recurrence. the mechanism by which recur- rence occurs is unclear. possibilities include reinfection from persistent asymptomatic ca-mrsa carriage or reinfection af- ter acquisition from environmental mrsa contamination or after new mrsa acquisition from close human or animal con- tact. invasive infections and necrotizing pneumonia severe, invasive ca-mrsa disease in previously healthy patients has been reported from many centers. “new” staph- ylococcal syndromes have been recognized in association with ca-mrsa isolates, suggesting that ca-mrsa genetic back- grounds and, possibly, the corresponding mssa genetic back- ground may carry novel virulence genes, a combination of virulence factors absent in many mssa strains, or an upregu- lation of widely prevalent virulence factors ( ) (table ). necrotizing fasciitis, necrotizing pneumonia, severe sepsis, and septic thrombophlebitis of large veins such as the iliac or femoral veins caused by s. aureus were rarely reported for healthy individuals prior to the emergence of ca-mrsa. however, there are now many reports of such infections (table ). for example, miller et al. described adults with necro- tizing fasciitis caused by mrsa at the university of california at los angeles (ucla) in to , of whom had no preexisting medical comorbidity. the five available isolates were usa and pvl� and carried sccmec type iv ( ). severe, invasive ca-mrsa infections have a high mortality rate, even when optimal therapeutic regimens are used. for example, the mortality rate for eight children with ca-mrsa sepsis at vanderbilt university medical center in tennessee was % ( ). while many invasive syndromes have been described (table ), this discussion will focus on necrotizing pneumonia. ca-mrsa necrotizing pneumonia is a distinct syndrome of hemoptysis, leucopenia, high fever, and cavitary lung lesions upon radiography, often requiring mechanical ventilation. david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ while infrequent, there is some evidence that the incidence of this condition may be increasing. among inpatients at u.s. hospitals in to , mrsa was the etiology of . % of pneumonias and . % of community-acquired pneumonias; a case of pneumonia was defined by the presence of a billing code for pneumonia in administrative data and a concomitant positive respiratory bacterial culture ( ). cases of necrotiz- ing mrsa pneumonia have often been linked to antecedent respiratory viral infection, particularly influenza ( , , , ). the clinical presentation of ca-mrsa necrotizing pneu- monia is reminiscent of rapidly progressive influenza cases during the influenza pandemic caused by s. aureus super- infection ( ). indeed, recent studies have suggested that most deaths related to the influenza pandemic were due to complicating bacterial pneumonia ( , ). in , in the first two waves of the worldwide pandemic of h n influenza a virus, several published series included cases of mrsa pneumonia complicating influenza in previously healthy people in the united states ( , , ) and aus- tralia ( ). more data are needed to define the interaction of influenza virus and s. aureus in the human respiratory tract. necrotizing pneumonia often has a rapidly progressive, fatal course and occurs most often in children and young adult patients. gillet et al. reported cases of community-acquired s. aureus pneumonia caused by pvl� strains in france in to with a mortality rate of % ( ). in a statewide surveillance of severe ca-mrsa (cdc criteria, except that health care exposures were “not recent”) infections in to in georgia, / , ( . %) patients had mrsa pneu- monia, / ( %) of whom died. controlling for age, pa- tients with mrsa pneumonia had an odds ratio of dying of . ( % ci, . to . ; p � . ) ( ) relative to other patients with severe ca-mrsa infections. among cases of necrotizing community-acquired pneumonia caused by pvl� s. aureus strains in to , the mortality rate was %, and the median age was . years. death was indepen- dently associated with “airway bleeding,” erythroderma, and leucopenia. a focal staphylococcal infection elsewhere, prior to the onset of pneumonia, was associated with decreased mortality ( ). anecdotal reports and series such as this re- port suggest that ca-mrsa lung infections resulting from hematogenous spread may have a lower case fatality rate than primary mrsa pneumonia. during the – influenza season, cases of second- ary bacterial infection were reported among , laboratory- confirmed cases of influenza in the united states. s. aureus was the most commonly identified pathogen in these cases ( / [ . %] s. aureus versus / [ . %] s. pneumoniae iso- lates), and the majority of the s. aureus isolates were mrsa for both adults ( / ) and children ( / ) ( ). among chil- dren, state health departments reported deaths from influenza in to . among the cases with adequate data, ( %) had a coinfecting bacterium; nearly half ( cases; %) were s. aureus. six of the s. aureus isolates for which data were available were methicillin resistant ( ). in the largest series to date, cases of s. aureus pneumonia were reported to a u.s. emerging infections network survey in to . of the isolates with known susceptibility, ( %) were mrsa isolates, and the median patient age was years. thirty-three percent of those tested had concomitant influenza virus infection, and % ( / ) of the patients died a median of days after the onset of symptoms. leucopenia was inde- pendently associated with death. of the mrsa isolates available, were usa , and was a pvl-negative usa isolate ( ). in atlanta in to , / ( %) children admitted to hospitals with influenza had a simultaneous s. table . reported invasive ca-mrsa infections in to type of infection or syndrome reference(s) brain abscess ....................................................................................................................... , , cavernous sinus thrombosis .............................................................................................. , , diarrhea and shock ............................................................................................................ endocarditis ......................................................................................................................... , , , , epidural abscess .................................................................................................................. fournier’s gangrene ............................................................................................................ , iliopsoas abscess, postpartum or otherwise ..................................................................... , lemierre’s syndrome .......................................................................................................... , mediastinitis, mediastinal abscess..................................................................................... , meningitis ............................................................................................................................ , , , orbital cellulitis ................................................................................................................... , acute osteomyelitis............................................................................................................. , , , , , , , , , , necrotizing conjunctivitis ................................................................................................... necrotizing fasciitis............................................................................................................. , , , , , , , , , , necrotizing pneumonia ...................................................................................................... , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , prostatic abscess .................................................................................................................. purpura fulminans .............................................................................................................. pyomyositis........................................................................................................................... , , , , , , , , , , , retropharyngeal abscess .................................................................................................... septic arthritis ..................................................................................................................... , , , , , septic thrombophlebitis or so-called “pelvic syndrome” ............................................... , , , sepsis, severe sepsis ............................................................................................................ , , , , , , , , , , , , , , , , vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ aureus infection, most of which were mrsa ( / ) and most of which were pneumonia ( / ). an additional seven children had simultaneous respiratory syncytial virus (rsv) and s. aureus infections ( ). the pathogenesis of these severe ca-mrsa infections, such as pneumonia, sepsis, and septic thrombophlebitis, re- quires further research to define high-risk populations, to iden- tify host genetic characteristics that increase susceptibility to infection, to assess the importance of antecedent colonization with mrsa as a risk factor, and to devise methods to prevent these devastating clinical syndromes. treatment of ca-mrsa infections uncomplicated sstis reviews and guidelines of therapy for ca-mrsa sstis abound ( , , , , , ), although there have been few controlled studies. the choice of empiric therapy for ca-mrsa sstis requires the clinician to distinguish between uncomplicated sstis and severe or complicated sstis ( ). uncomplicated sstis are not accompanied by systemic signs that indicate a potential for rapidly progressive clinical decline and a lack clinical features of complicated sstis, including a large or rapidly growing lesion or a lesion with deep tissue penetration. a systemic inflammatory response syndrome and leucopenia are absent. host characteristics such as immuno- compromise, age younger than months, lack of a reliable site for outpatient follow-up care, or poorly controlled comorbid conditions may dictate the need for hospitalization ( ). in a region or a population with a high prevalence of ca- mrsa, e.g., where � % of clinical s. aureus isolates are mrsa isolates, �-lactam antibiotics are no longer reliable for empiric therapy. for small, uncomplicated ca-mrsa skin abscesses (i.e., those � cm in diameter), when reliable fol- low-up is available, incision and drainage may be adequate without antimicrobial drug therapy ( ). this contention is supported by studies in which patients received mrsa-inap- propriate antimicrobials for mrsa sstis and, nevertheless, did well. in to in dallas, / ( %) children with sstis treated with an mrsa-inappropriate antimicrobial (i.e., antimicrobial drugs to which the cultured isolate was not sus- ceptible in vitro) had improvement at a - to -day follow-up: / ( %) patients continued on the original drug regimen, while / ( %) patients were changed to an mrsa-appro- priate agent; no difference in outcome was observed ( ). similar results were found by uncontrolled studies conducted with adults treated with mrsa-inappropriate antimicrobials in geographically diverse u.s. emergency departments in ( ) and among patients treated at a clinic for sstis in san francisco in both to ( ) and to ( ). in to , a subset of outpatients attending a san francisco wound clinic were randomized after incision, drainage, and packing of a skin abscess � cm in diameter to receive cephalexin or placebo. although . % of isolates from the study subjects were mrsa isolates, high cure rates did not differ significantly at days for those treated with cephalexin ( . %) and those treated with placebo ( . %) ( ). mrsa-appropriate antimicrobial therapy appears to be im- portant, however, for the treatment of at least some sstis caused by ca-mrsa strains, as suggested by a retrospective study of two hospitals in arkansas. treatment failure occurred for % of patients with a ca-mrsa ssti in to when mrsa-appropriate therapy was used within h of presentation but occurred for % of patients with sstis when mrsa-inappropriate therapy was used (p � . ). in- cision and drainage were performed for % of the patients at the index visit. the difference in the rate of treatment failure was significant even when included in a logistic regression model with many other potential predictors. it is not clear if patients received therapy with a single antimicrobial or multi- ple agents ( ). although some researchers have reported worse outcomes for ca-mrsa than for ca-mssa infections, sstis caused by mrsa with onset in the community did not have worse out- comes than those caused by mssa in los angeles in ( ). there is no consensus as to which patients can be treated with incision and drainage alone and which patients require adjunctive antimicrobial therapy ( ). readers of the new england journal of medicine demonstrated that u.s. providers polled to recommend treatment for a college athlete with a - by -cm buttock ssti differed in their preferred initial man- agement: among the , respondents, % advocated drainage and an antimicrobial agent active against mrsa, % advocated drainage alone, and % advocated drainage and an agent active against mssa ( , ). initial empiric antimicrobial therapy, when given, must be chosen in accordance with local institutional antibiotic suscep- tibility data. in geographic regions with a high prevalence of ca-mrsa, a sample of the purulent material should be sent for culture and susceptibility testing. antimicrobials such as clindamycin, doxycycline, minocycline, and trimethoprim-sul- famethoxazole (tmp-smx) are often recommended for em- piric treatment, although randomized clinical trials have not been conducted to evaluate or compare these therapies for ca-mrsa; such trials were, however, initiated in under the sponsorship of the nih. as always, therapy should be adjusted to target the culture and antimicrobial susceptibility results when available. clindamycin remains a mainstay of therapy for uncompli- cated ca-mrsa sstis in much of the united states, although some researchers have suggested that resistance may be in- creasing among ca-mrsa strains ( , ). despite heavy use, however, the rate of clindamycin resistance changed little at a baltimore pediatric ed: % of mrsa isolates in to were susceptible to clindamycin, similar to the percent found in to ( ). a group from baylor university in to found in an uncontrolled study that clindamycin was effective for invasive community-onset mrsa infections of children ( ). although it is often associated with a successful outcome in therapy for sstis, concern has also been raised about the risk of clostridium difficile-associ- ated diarrhea ( ) with clindamycin therapy. when an s. aureus isolate is susceptible to clindamycin but resistant to erythromycin, inducible resistance to clindamycin should be assessed by the d test, as recommended by the clinical and laboratory standards institute ( ). tmp-smx is also favored by many experts for the treatment david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ of ca-mrsa sstis. however, it may be ineffective against cellulitis or other sstis caused by group a streptococci, and therefore, treatment failure may occur in this situation, al- though few explicit data are available. allergy to sulfa drugs or renal failure can preclude its use. furthermore, there is a theoretical risk of treatment failure of antifolate drugs in the presence of pus because the presence of large amounts of released thymidine from tissue damage may abrogate the effect of these agents ( ). a randomized, placebo-controlled study of pediatric patients with an ssti in an ed in st. louis, mo, in to demonstrated that incision and drainage with subsequent oral placebo ( / ; . %) were noninferior to incision and drainage with a -day course of tmp-smx ( / ; . %). eighty percent of the lesions grew mrsa, and % of the isolates were susceptible to tmp-smx ( ). investi- gators at fenway clinic in boston reported that tmp-smx was used to treat more than % of mrsa sstis in . in a retrospective study, in to , they found that therapy using an agent to which causative mrsa strains were suscep- tible (commonly tmp-smx) was associated with a higher odds of clinical resolution of mrsa sstis in a multivariate logistic regression model ( ). a retrospective study of children ad- mitted to texas children’s hospital in houston in to for ca-mrsa sstis (no hospitalization in the previous year, no indwelling catheters or percutaneous devices, and no chronic medical conditions that predispose one “to hospital- ization or frequent medical visits”) compared outcomes among those who received oral tmp-smx and those who received clindamycin therapy prescribed at discharge. patients with con- current, invasive mrsa infection were excluded. among and children receiving tmp-smx and clindamycin, re- spectively, there was no difference in the percentages of pa- tients returning to the hospital for a worsening of the index lesions. however, more patients treated with clindamycin had undergone surgical drainage prior to discharge ( . % versus %; p � . ), potentially biasing the outcome in favor of clindamycin treatment ( ). limited data are available to document the efficacy of doxy- cycline or minocycline in the treatment of an mrsa ssti after incision and drainage ( ); like tmp-smx, these agents are unlikely to be useful when there is a high suspicion for group a streptococcal infection. in an underpowered, small, open- label study of outpatients in to at an ed in dallas, tx, patients with an ssti ( with mrsa, with mssa, culture negative, and the remaining with coagulase-negative staphylococcus, corynebacterium species, streptococcus milleri, or “gastrointestinal flora”) were randomized to receive tmp- smx or doxycycline. fourteen patients with an ssti ( of whom had mrsa) were randomized to receive tmp-smx, and patients ( of whom had mrsa) were randomized to receive doxycycline; one patient in the tmp-smx group was lost to follow-up. in an intention-to-treat analysis, no signifi- cant difference in the failure rate was found ( / [ %] in the doxycycline group and / [ %] in the tmp-smx group; reported as a p value of . ) ( ). oral therapy with linezolid, a bacteriostatic oxazolidinone, is effective in treating patients with an ssti; resistance to lin- ezolid among mrsa isolates has been reported with pro- longed use ( ) but is rare with short-term use. the use of linezolid is limited by high cost, limited availability of the suspension, the occurrence of thrombocytopenia with pro- longed use, and the availability of less-expensive, effective oral antimicrobial drugs. certain antimicrobial drugs should be avoided as therapy for mrsa sstis despite susceptibility documented by laboratory testing. fqs are an important example. resistance to fqs is common ( ), and the rate of resistance of s. aureus increases rapidly with exposure. resistance emerging during fq therapy was related to the duration of therapy and dosing in an in vitro model ( ). rifampin should also not be used as a sole agent in the therapy of ca-mrsa infections because of the high rate of emergence of resistance ( ). severe infections invasive ca-mrsa infections, such as bacteremia, pneumo- nia, and osteomyelitis, when suspected, usually require hospi- talization and therapy with intravenous antibiotics ( ). al- though guidelines and reviews have been reported ( , , , ), evidence to guide therapy remains scarce. appro- priate cultures are essential and should be obtained prior to the initiation of empiric antibiotic therapy. antimicrobial ther- apy for such severe ca-mrsa infections is generally the same as that for invasive ha-mrsa infections ( ). vancomycin is still the primary agent used for suspected invasive ca-mrsa infections; it is generally well tolerated and has few adverse effects. concerns have been raised about its poor penetration into lung tissue, underdosing, reported treatment failure in cases of necrotizing pneumonia caused by pvl� ca-mrsa strains ( ), increasing low-level (intermediate) resistance ( , ), and “mic creep” ( , , ). it is not known if alternative initial antibiotic choices would improve the often fatal outcome of severe, invasive ca-mrsa infections with their rapid, progressive clinical tempo ( , ). the efficacy of parenteral tmp-smx for the therapy of invasive ca-mrsa infections has received little study. among ivdus with severe s. aureus infections randomized to receive intravenous vancomycin or tmp-smx, the cure rates, / ( %) for vancomycin and / ( %) for tmp-smx, differed insignificantly; % of the patients had mrsa infec- tions ( ). that study was performed before the ca-mrsa infection era. also, the study may have lacked adequate power to demonstrate a difference, as the authors themselves admit- ted, but the data suggest that intravenous tmp-smx deserves additional evaluation. the adjunctive use of an antimicrobial agent interfering with bacterial protein synthesis, such as clindamycin or linezolid, is sometimes advocated for a ca-mrsa infection in which toxin-mediated pathogenesis is suspected, although there is lim- ited evidence to support this approach ( , ). such ad- junctive therapy may be particularly valuable for intravascular infections when viable organisms are expected for several days despite therapy. the theoretical basis for this approach rests on the hypothesis that ribosomally active antibiotics decrease toxin production more rapidly than other antibiotics. the in vitro exposure of mrsa isolates to a subinhibitory concentra- tion of �-lactam antibiotics increased the expression of toxin genes, including those for pvl, alpha-toxin, and toxic shock syndrome toxin (tsst- ). in contrast, the use of clindamycin or linezolid decreased the production of these toxins ( ). vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ several newer antistaphylococcal agents are available for parenteral therapy, including daptomycin, linezolid, tigecy- cline, and quinupristin-dalfopristin. daptomycin, which is bac- tericidal and can be administered once daily to patients with normal renal function, has been shown to be effective against mrsa sstis ( ) and has been used in adults with bacteremic infections. in a randomized, controlled trial with adults, dap- tomycin was noninferior to vancomycin for the therapy of right-sided s. aureus endocarditis, although treatment failures occurred due to the emergence of daptomycin resistance dur- ing therapy ( ). daptomycin is not useful for pneumonia because it is inactivated by pulmonary surfactant ( ). al- though it is generally well tolerated, patients require weekly creatinine kinase testing to monitor for rhabdomyolysis, a rare but potentially serious adverse reaction ( ). safety and effi- cacy data are lacking for pediatric patients. tigecycline, a glycylcycline antibiotic chemically related to minocycline, has been approved for use in patients with intra-abdominal infections and mrsa sstis ( , ) and is safe and effective for the therapy of complicated mrsa sstis in hospitalized patients, with a cure rate similar to that of vancomycin ( . % versus . % in a microbiologi- cally modified intention-to-treat analysis) ( ). this static agent is dosed twice daily intravenously; common adverse reactions include nausea, vomiting, and abdominal pain ( , ). tigecycline is not appropriate for children younger than years of age. linezolid is well suited for the therapy of mrsa respiratory infection because of its excellent penetration into the lung, and it may be an appropriate choice especially in cases in which the mic of vancomycin is high ( ). reports of linezolid resis- tance with prolonged use have occurred ( ). the use of the streptogramin antibiotic combination quinu- pristin-dalfopristin is sometimes limited by severe, reversible arthralgias as well as nausea, diarrhea, vomiting, conjugated bilirubinemia, and rash that occurs with prolonged use ( ). resistance of s. aureus has been reported ( , ). two newly developed cephalosporins, ceftobiprole and ceftaroline, which differ from other �-lactam antimicrobials in their high affinity for pbp a, show promise as agents effective against mrsa ( , , ). they have not been licensed for use in the united states. the novel glycopeptides dalba- vancin ( ), telavancin ( ), and oritavancin ( ) inhibit cell wall synthesis like vancomycin. telavancin, which was ap- proved by the u.s. food and drug administration (fda) in september , also causes a depolarization of the bacterial cell membrane, theoretically enhancing its bactericidal effect ( ). the main advantages of dalbavancin and oritavancin over vancomycin may be their long half-lives, which allow for infrequent dosing ( ). no data for efficacy or safety in chil- dren are available for these novel agents. one case report ( ) and one in vitro study ( ) suggested that intravenous immunoglobulin (ivig) may be an effective adjunctive therapy for sepsis caused by pvl� ca-mrsa, but further study is needed to validate this observation ( ). in- fectious foci should be drained, and necrotic tissue should be debrided when feasible ( , , , , , , , , ). prevention of ca-mrsa infections infection control practice in the health care setting relies on guidelines from professional and governmental bodies ( , , ). the standard hospital guidelines regarding mrsa prevention stress that “antibiotic-resistant pathogens are sen- sitive to routinely used hospital disinfectants, but it is essential that correct and meticulous cleaning and use of disinfectants be performed” ( ). with few exceptions ( ), however, most specific interventions, including the isolation or cohorting of colonized individuals, active identification of mrsa car- riage by surveillance cultures of high-risk populations, decolo- nization of mrsa carriers, environmental disinfection by chemical means or even light ( ), or some combination of the above-described interventions, have failed to reliably limit transmission or spread ( ). even with this uncertainty, in community and other institutional settings, there is far less evidence to support the use of these approaches, and as the ca-mrsa epidemic continues, the need for effective inter- ventions has become more acute. mrsa recovery from fomites many researchers have found mrsa in the environment outside the health care setting, but the relevance of its pres- ence on fomites to human colonization and infection is not clear. a variety of mrsa genotypes has been isolated from seawater at recreational beaches in hawaii ( ) and beaches in california and washington state ( ); it has been recov- ered from coins in the presence of pus and blood, although mrsa could not be recovered from clean coins within h of initial contamination ( ). in boston, s. aureus was recovered from fomites in / homes of healthy individuals with a child in diapers and a cat or dog in the home; mrsa was recovered from fomites in / homes. mrsa was recovered from sinks, countertops, faucet handles, dish sponges, pet food dishes, infant high-chair trays, and others ( ). efforts to eradicate the colonization of health care workers in germany in to succeeded only when household contacts and heavily contaminated fomites in the homes of the health care workers were disinfected ( ), suggesting that fomites may constitute important environmental reservoirs. specific fomite materials have not been tested extensively for the survival of mrsa. evidence from one study suggests that mrsa survives poorly on copper surfaces compared with stainless steel ( ), but there are no studies available on the replacement of metal surfaces with copper in the community. it is clear that mrsa environmental contamination is com- mon, at least in the hospital ( ) and, from case reports, in the community as well. mrsa can spread from person to person via direct casual contact or from the contamination of inani- mate objects ( , ). however, the importance of environ- mental contamination in mrsa transmission remains uncer- tain. spread between patients and environmental surfaces may occur rapidly. environmental contamination with mrsa oc- curred within h of admission of two icu patients with an mrsa infection in a hospital in england; the rooms had been cleaned with a hydrogen peroxide aerosol prior to the admis- sions ( ). mrsa can survive on objects such as dry mops for up to weeks ( ); paper and foil wrappings of sterile hos- david and daum clin. microbiol. rev. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ pital goods for more than weeks ( ); plastic charts, a laminated table, and polyester cloth curtains for more than week ( ); and mattresses for months ( ). mrsa can also be recovered from hospital ventilation systems ( , ), chi- ropractic adjusting tables ( ), computer keyboards, pagers ( ), and faucet handles ( ). in a japanese hospital, mrsa was isolated from sinks, floors, bed sheets, and the air in a surgery ward. the number of cfu of mrsa detected from air samples increased more than times during the changing of bed linens, although the significance of airborne mrsa in transmission is not known ( ). even reportedly rigorous cleaning may not be effective in eradicating mrsa contamination of fomites. at a hospital in the united kingdom, in % of rooms formerly housing mrsa-infected patients, cultures of mattresses, pillows, chairs, lockers, bed wheels, commodes, bed frames, nurse call buttons, a television set, floors, window sills, or door handles still grew mrsa despite “terminal” cleaning ( ). limited evidence from studies in the health care setting indicates that environmental contamination can lead to human colonization and disease with mrsa ( ), although much of the data are only suggestive. at a baltimore, md, outpatient infectious disease clinic in , two health care workers de- veloped mrsa sstis. seven of environmental cultures tested grew mrsa. all seven isolates carried the sccmec type iv element and the genes for the pvl toxin ( ). after a pediatric icu mrsa outbreak in taiwan, investigation re- vealed that . % of health care workers were colonized with mrsa. some of the health care workers carried the same mrsa clone that was isolated from patient infections and from a fomite; other health care workers carried different mrsa clones ( ). in a dermatology ward, it was deemed likely that the contamination of hospital equipment with mrsa and borderline methicillin-resistant s. aureus led to infections ( ). dutch investigators isolated a strain of mrsa from a physician’s office floor that may have been the source of his nasal recolonization ( ). a hospital outbreak of mrsa in a general surgical ward in the united kingdom was con- tained only after an aggressive environmental cleaning pro- gram was instituted. this included the formation of a new infection control team that met monthly, sequential closure of each part of the ward for thorough cleaning, dust traps being removed from around radiators, ventilation ducts being cleaned, the hours of weekly person-cleaning time being in- creased from . to . h, curtains being laundered every months at a minimum, and several other interventions. of environmental cultures obtained from hospital rooms before and after an intervention, . % grew mrsa. among mrsa isolates from male patients housed in these rooms, had an identical pfge type, the same type shared by all but of environmental isolates tested ( ). a study of an icu showed that the attributable risk for the acquisition of mrsa infec- tions from occupying a bed previously occupied by a patient who was colonized by or infected with mrsa accounted for only . % of mrsa cases in the icu ( ). mrsa sstis and mrsa gastrointestinal colonization ( ) in the health care setting may be more likely to produce envi- ronmental contamination than either other mrsa infections or colonization. in a study from a rhode island hospital, % of tested surfaces (including patient gowns, nurses uniforms, beds, blood pressure cuffs, over-bed tables, floors, linens, and door handles) were contaminated in rooms of patients with skin or urine infections with mrsa, whereas only % of sur- faces were contaminated in rooms of patients with mrsa infections at other sites ( ). a study of a nursing home showed rare environmental contamination by mrsa, despite a high prevalence of nasal colonization among its patients and despite the fact that % of patients newly acquired mrsa asymptomatic colonization while at the nursing home ( ). this finding suggests that when active infections are rare, even in the presence of a high prevalence of asymptomatic coloni- zation, environmental contamination may be uncommon. chlorhexidine gluconate and mrsa decolonization chlorhexidine gluconate (chg) is a skin antiseptic in use in the health care setting since the s with many potential applications for infection control, as discussed in a recent re- view ( ). chg is bactericidal for several pathogenic bacteria ( ), including mrsa ( , , ). however, bacteria, par- ticularly gram-negative bacteria, can develop resistance to chg ( ) that may increase with increased chg use ( ). it has not been used widely or studied rigorously in community settings, although it is often recommended by decolonization protocols for patients with recurrent mrsa infections. it is also commonly used for preoperative bathing for surgical pro- cedures, although a systematic review of randomized trials in the literature in showed no decrease in surgical-site in- fections in the hospital after preoperative antiseptic bathing; all six trials compared chg with no intervention or bar soap ( ). in the health care arena, chg is safe ( ) and provides a “residual effect” that continues to kill pathogens for up to h after application to the skin ( ). chg has been used suc- cessfully to limit the spread of vancomycin-resistant entero- cocci (vre) in an medical intensive care unit ( ), to prevent catheter infections ( , ), and for hand disinfection ( ). universal chg baths as part of a multifaceted intervention, including the screening of all admitted patients for nasal col- onization, isolation of colonized patients, and rotating univer- sal use of three intranasal antimicrobial ointments, was suc- cessful in decreasing mrsa infections in one icu in the united kingdom; the independent effect of chg is not known ( ). in one hospital study, the use of chg baths alone was associated with a loss of mrsa colonization in of patients ( ). an aggressive decolonization regimen applied to patients in a randomized trial of chg washes, mupirocin nasal ointment, and oral rifampin and doxycycline for days yielded % decolonization months later, compared with % among untreated patients. at months, % of the treated group remained free of mrsa colonization; again, however, the independent effect of chg is not known ( ). it is not certain that evidence derived from the health care setting can be applied to ca-mrsa isolates in other arenas. one study of chlorhexidine skin cleaning in a large cohort of soldiers did not show an effect on decreasing the incidence of sstis ( ). vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ mupirocin inside and outside the health care setting, mupirocin has long been used for the attempted decolonization of patients colonized by s. aureus, but the efficacy data are conflicting ( , ) a review of four randomized, controlled trials showed a significant decrease in rates of postsurgical infections among s. aureus-colonized patients receiving mupirocin com- pared with either placebo or no treatment ( . % versus . %; rr, . ; ci, . to . ) ( ). another review in found no evidence to support the general practice of using topical or systemic antimicrobial therapy to decolonize people with mrsa in the nose or elsewhere on the body ( ). few systematic studies of mupirocin to decolonize mrsa carriers have been attempted in the community. at a texas army base in , , soldiers attending classes were ran- domized into two groups. all were screened for mrsa colo- nization. those colonized with mrsa received mupirocin or placebo. a cotton-tipped applicator was used to apply % mupirocin ointment or placebo twice daily into the nasal ves- tibule for days. although mupirocin was effective at decolo- nizing of ( . %) colonized soldiers compared with of ( . %) colonized soldiers receiving placebo in a -week follow-up period, the incidence rates of mrsa skin infections were similar for the two groups ( versus confirmed mrsa skin abscesses). also, the incidence of new ca-mrsa coloni- zation in the group of soldiers decolonized with mupirocin ( / , ; . %) did not differ significantly from new coloni- zation in the placebo-treated group ( / , ; . %) ( ). in another community-based trial, mupirocin failed to produce lasting decolonization among mrsa carriers ( ). thus, there is no evidence that mupirocin or any other intranasal antimicrobial agent should be used in any community setting for mrsa decolonization. retapamulin retapamulin is a topical antibiotic, the first in a class known as the pleuromutilins to be approved by the u.s. fda for the treatment of impetigo. in part because cross-resistance to other antimicrobials is thought to be unlikely and because it is effective against tested mrsa strains, this drug may be useful in decolonization regimens for mrsa. the drug acts by inhib- iting the s subunit of the ribosome. clinical trials are needed to assess the value of retapamulin for this indication ( , ). specific populations athletes. among athletes, there are several published guide- lines for the prevention of mrsa transmission, although few provide evidence. for example, a general guideline for the control of mrsa in the community, prepared in and updated in december , has been released by the wash- ington state department of health in collaboration with other government bodies in the state. guidelines for the control of mrsa in the athletic setting ( ) were included. the na- tional collegiate athletic association (ncaa) has published guidelines specifically for wrestlers, recommending that wres- tlers with an ssti be excluded from play until h after the initiation of therapy if there is marked clinical improvement and no new lesions appearing for h. an intact occlusive dressing must be in place before and during competition or practice ( ). jails and prisons. although there are few relevant published data, the u.s. federal bureau of prisons has released guide- lines for the prevention and treatment of mrsa infections among incarcerated populations. these guidelines do not rec- ommend routine attempts to decolonize detainees. decoloni- zation is recommended in the case of “recurrent mrsa infec- tions or in the context of a mrsa outbreak” with intranasal mupirocin applied twice daily for days. the guidelines call for detainee education that stresses the importance of regular hand washing, exclusion of infected detainees with draining wounds from certain activities, special procedures for the transfer of inmates, and early intervention for skin infections. enhanced surveillance is recommended after a single case of mrsa is diagnosed. detainees with infections are placed in individual cells only if they have uncontained drainage, whereas those with small skin infections that can be “easily contained by [a] simple dressing” can remain among the gen- eral population. in an outbreak setting, the cohorting of in- fected inmates, increased attention to hand hygiene, the use of antimicrobial soaps, more stringent infection control measures in clinics, and targeted examination of close contacts of in- fected inmates are recommended ( ). such a comprehensive program may not be practical in all jails and prisons, and more research is needed to evaluate the contribution of the individ- ual interventions. the texas department of state health services has pre- pared similar guidelines for mrsa prevention among incar- cerated individuals ( ). some researchers have advocated improved hygiene with better access to soap, showers, and clean clothing; educational campaigns; round-the-clock urgent care; and dedicated wound clinics as potential interventions to prevent the spread of mrsa in incarceration settings ( ). for example, after an outbreak of mrsa sstis in a georgia prison facility housing detainees, administrators implemented several interven- tions, including skin examinations upon arrival, liquid soap near all bathroom sinks, chg body washes for days for all detainees at the start of the intervention, an educational pro- gram on skin hygiene, and waiving of the sick visit fee for skin complaints; all detainees were urged to visit the clinic if they had skin lesions. for detainees with mrsa skin lesions, a standardized antimicrobial regimen was prescribed, intranasal mupirocin and/or oral rifampin was given for decolonization, and careful attention was paid to dressing changes. with these interventions, the incidence of mrsa sstis decreased from . to per , detainee-days ( ). the introduction of such a multiplicity of interventions, while apparently effective at curtailing an outbreak, may not be universally practical in jails and prisons. in other settings, alcohol-based hand sanitiz- ers have been used to improve hand hygiene, but as demon- strated by a case of severe intoxication of a prison inmate who ingested hand sanitizer ( ) and given their flammability, these agents are not typically allowed in places of incarcera- tion. references . abdel-haq, n., h. al-tatari, p. chearskul, h. salimnia, b. i. asmar, m. r. fairfax, and m. amjad. . 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(history, university of chicago), ms (health studies, university of chicago), completed the robert wood johnson clin- ical scholars program and clinical infectious diseases fellowship at the university of chi- cago. he is now instructor in the depart- ments of medicine, pediatrics, and health studies at the university of chicago. he is interested in the determinants of the fitness of successful methicillin-resistant staphylo- coccus aureus (mrsa) strains as well as specific populations at high risk for asymptomatic carriage of mrsa. he has evaluated the criteria used to define mrsa as being community associated and studied the molecular epidemiology of mrsa infection for the past years, in- cluding studies of cystic fibrosis patients, alaska natives, incarcerated populations, and patients at academic medical centers. he also studies the history of infectious diseases and their control. robert s. daum, md, cm (mcgill univer- sity), professor of pediatrics, heads the uni- versity of chicago mrsa research center. his projects include a household contacts study to prospectively define colonization and infection rates among household con- tacts of index patients with ca-mrsa in- fection and the rates of environmental con- tamination in these households, a treatment study to determine the optimal management of uncomplicated skin and soft-tissue infections, and a jail study to determine the frequency of environmental contamination in the dallas county jail and the effec- tiveness of bathing with chlorhexidine wipes in decreasing the preva- lence of mrsa. he also studies staphylococcal signal transduction mechanisms to gain insight into antibiotic resistance mechanisms among mrsa strains. his laboratory focuses on molecular pathophys- iology to investigate the reasons for the dominance of the usa ca-mrsa clone. a newly initiated immunological study is an attempt to understand why people are differentially susceptible to ca-mrsa infections. vol. , community-associated methicillin-resistant s. aureus o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://cm r.a sm .o rg / d o w n lo a d e d fro m http://cmr.asm.org/ research article psychological and physiological relaxation induced by nature-working with ornamental plants jiang tao, ahmad hassan , chen qibing , liu yinggao , guo li , mingyan jiang, deng li, li nian, lv bing-yang, and zhong ziqin college of forestry, guizhou university, guiyang, guizhou , china college of landscape architecture, sichuan agricultural university, chengdu, sichuan , china college of forestry, sichuan agricultural university, chengdu, sichuan , china college of horticultural sciences, sichuan agricultural university, chengdu, sichuan , china correspondence should be addressed to ahmad hassan; ahmaduaf @gmail.com, chen qibing; @qq.com, and liu yinggao; @qq.com received february ; accepted september ; published march academic editor: cengiz Çinar copyright © jiang tao et al. �is is an open access article distributed under the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. objective. nature has a significant impact on general well-being. however, till date, little psychophysiological evidence is available on the benefits of nature-based activities in adults. �e primary goal of this study was to determine the physiological and psychological benefits of horticultural activity in adults. �e participants were instructed to perform the making of a flower basket (horticultural activity) and a computer task (i.e., control activity) was compared. methods. a total of chinese females (mean age . ± . years) participated in this experiment. �e blood pressure, the state-trait anxiety inventory (stai), and the electroencephalograms (eegs) were used to measure the participants’ psychophysiological responses. results. analysis of the stai data showed a lower anxiety score a�er performing the horticultural activity than a�er performing the control activity. furthermore, in the eeg evaluation, variations in the brainwaves were observed a�er both activities. conclusions. �e study results suggest that horticultural activity induced physiological and psychological relaxation in adults. . introduction humans are considered to be entirely dependent on nature for their emotional, cognitive, and physical needs [ – ]. however, whether nature is beneficial for mental health remains under investigation by scientists at many educational institutions [ ]. in the s, scholars investigated the psycho- logical role of nature applied psychometric measures to explore the eco-friendly perceptions and cognitive states of human subjects in natural surroundings [ , ]. however, in the s, some scholars began to examine the effects of nature on the participants’ psychological and “biological responses to various environments” [ – ]. studies have found that con- tact with plants can have both psychological and physiological benefits [ , , ]. furthermore, involvement in nature and/ or wilderness settings can help with stress management and can be healing [ ]. in addition, humans who spend time in natural environments are healthier and more mentally active [ ]. currently, people are increasingly living in urban places and spending more time indoors away from nature [ ]. many mental health problems, such as depression and stress, are believed to occur from a lack of exposure to nature or from living in an artificial world [ ]. furthermore, recent advance- ments in technology are also considered to be hurdles because most adult populations are connected to electronics, such as mobile phones and tablet devices, and they are losing their connection to the natural environment. moreover, this dis- persal of information technology causes considerable stress, such as technostress [ ], which is a new disease of adaptation that is caused by an inability to cope with new computer tech- nologies in a healthy way. �erefore, there is a growing need to reconnect adults to the healing powers of natural environ- ments. people also receive benefits from plants in natural or vegetative surroundings in both direct and indirect ways such as lower blood pressure, increased productivity and attentive- ness, reduced mental fatigue, and stress and fewer reports of hindawi discrete dynamics in nature and society volume , article id , pages https://doi.org/ . / / mailto: https://orcid.org/ - - - mailto: https://orcid.org/ - - - mailto: mailto: https://orcid.org/ - - - mailto: mailto: mailto: mailto: mailto: mailto: mailto: https://creativecommons.org/licenses/by/ . / https://creativecommons.org/licenses/by/ . / https://doi.org/ . / / discrete dynamics in nature and society illness [ ]. active contacts such as contact with plants have been shown to provide psychophysiological benefits, including improved social interaction, increased self-esteem, and reduced stress levels [ ]. limited numbers of studies have described the clinical effects of horticultural therapy; although, interactions with nature have been shown to have physical, emotional, social, and cognitive benefits that help reduce stress [ ]. few studies have examined the effects of indoor plants that are relevant to the well-being and effectiveness of office workers. �ese outcomes include task performance, room assessments psychophysiological stress responses, and emo- tional states [ – ]. additionally, some experiments have explored attitudes towards plants in the office [ ], and the effects of plants on the discomfort and health symptoms that are associated with sick building syndrome [ – ]. however, the findings from experiments that were conducted in either simulated or laboratory settings may not generalize well to real office settings. additionally, to date, there is a lack of sci- entific research on eeg regarding the effects of plants in adults. . overview of electroencephalograms (eeg) and brainwaves richard caton ( ) discovered the existence of electrical currents in the brain. subsequently, in , hans berger was the first to record the electrical currents inside the brain. he used eegs to explain electrical brain activity and discovered the alpha wave ( – hz), which is also known as berger’s wave [ ]. in , adrian and matthews introduced new ideas regarding human brainwaves. during the ’s, eeg technology was successfully applied in all fields of science including neurosurgery, neurology, and cognitive science. finally, in , dr. gray walter connected electrodes directly to the motor areas of a human brain to investigate brainwave activity. �e human brain consists of hundreds of billions of brain cells that are called neurons. �ese neurons have axons that can transmit signals through neurotransmitters to the dendrites of other neurons, which then lead to an electrical polarity change inside the neuronal axon of the receiving neu- ron. �is polarity change can be recorded by using eegs [ , ]. �e eeg signals originate from the inhibitory (hyper- polarizing) and excitatory (depolarizing) post-synaptic poten- tials of the pyramidal neurons, which are present in the lower portion of the cerebral cortex [ , ]. eegs represent the electrical activity inside the brain and provide valuable infor- mation regarding various tasks that occur in the brain. in the medical field, eegs are primarily used for various diagnoses, such as cerebrovascular or structural brain diseases, dementia, epilepsy, disturbances of consciousness, brain death, and other psychological disorders. however, eegs are also used to inves- tigate electrical brainwave responses [ , ], alpha waves occur when an individual is in a relaxed state, whereas beta waves occur during alert and focused states [ ]. increased alpha brain activity is connected more to a relaxed state than to a condition of stress [ ]. recent advancements in cognitive neuroscience, information technology, and other invasive or noninvasive brain-signal capturing devices allow us to directly explore the human brain [ ]. �e neurosky mind wave is an alternative nonmedical instrument that was designed by the neurosky company and can be used as a computer- human interface to record human brainwave activity. �e brain-computer interface (bci) system is a direct communi- cation pathway between the brain and an external device [ ]. �is technology is used in various computer-supported appli- cations, such as video games, research so�ware, and human health perspectives. �e neurosky mind wave contains a single recording probe, and the signals are typically received through an electrode that is placed on the le� side of the fore- head above the eyes (fp position) [ ]. compared with other professional instruments, this device is simple to operate, inexpensive, and has % accuracy. �e major components that are built into the mind wave headset include a bluetooth with a computer and a �ink gear generic chip, which con- tains signal data that can be visualized by a computer a�er processing. �e neurosky mind wave headset provides unfil- tered brainwave data and can be used by scientists to perform their own measurements. �ere is a little eeg information on the positive effects of horticultural activity in modern adults. �erefore, the goals of this study were to investigate the psy- chophysiological effects of horticultural activity in adults. . materials and methods . . participants. chinese female students (mean age . ± . years; mean weight . ± . kg; mean height . ± . cm) at the sichuan agricultural university in china participated in the experiment. none of the subjects had a history of psychological disorders. all drugs were strictly prohibited throughout the experiment. �e experiments were performed in silence in a laboratory room at the college of landscape architecture. prior to the experiments, the participants were fully informed of the methods of this study, and written informed consent was obtained. �is experiment was conducted with the approval of the ethics committee of the college of landscape architecture, at the sichuan agricultural university, china. . . materials. arranging flower baskets is a typical horticultural activity and was selected for this study; this activity involved the use of real flowers (i.e., roses (rosa hybrid), chrysanthemums (chrysanthemum morifolium), bamboos (fargesia), lilies (lilium candidum), and carnations (dianthus caryophyllus) of approximately the same size and weight. a basic method regarding the making of flower baskets was taught to each participant prior to the experiments so that they could work more smoothly. . . protocol. �e subjects were randomly divided into two groups. on the first day of the experiment, group a performed the horticultural activity (making flower baskets) by using real flowers, and group b performed the control activity (downloading research papers) by using a computer; the control activity is a typical computer activity, that also needs constant physical activity, similar to the horticultural task (figure ). on the second day, the groups switched activities. both activities were performed in a seated position for min. discrete dynamics in nature and society . . measurements. an eeg headset was attached to the subjects’ heads in the waiting room. �en, the subjects entered the experimental room. a�er a -min rest in a seated position, the subjects performed their assigned tasks, i.e., either the horticultural activity that uses real flowers or the computer task, for min. eegs were continuously measured during each task with a mind wave eeg headset (neurosky mind wave beijing oriental creation technology co., ltd, china). typically, an eeg records the brainwave activity inside the brain from the fp position above the eye, which accords with the american electroencephalographic society’s ( ) – system of electrode placement. in addition, the eeg setup consisted of four essential parts, namely, ( ) a headband, ( ) an ear-clip, ( ) a sensor arm that contains the eeg electrode, and ( ) a bluetooth device. �e blood pressure and the pulse rate data were recorded before and a�er the tasks, by using a digital blood pressure device (omron, hem- , china- type upper arm type intelligent electronic sphygmomanometer). �e eeg data were recorded before and throughout the experiment ( min), and the alpha and beta brainwaves were compared between the two conditions to determine the participant’s relaxation and attention levels in the two conditions. �e measurements were obtained with a frequency of hz, which means that values were obtained every second. �e raw eeg data that include high alpha and high beta brainwaves were collected at -minute intervals at each experimental site and were compared between the two conditions. �e higher values of experimental data show the participants in a more relaxed and alert condition. relaxed wakefulness is a condition that is used for alpha activity during its predominant state [ ]. �e feelings that the participants experienced during the experiment were examined by using the state-trait anxiety inventory (stai) [ ], a self-rated questionnaire that was completed before and a�er the tasks. �e (stai) consists of twenty questions (e.g., “i feel nervous”; “i feel relaxed”; “i feel frightened”, etc.). �e participants answered each of the twenty items according to how they felt before and a�er performing both activities by using the following four-point scale: = moderately, = not at all, = very much, and = somewhat. . . statistical analysis. statistical analyses were conducted by using spss . (spss inc., chicago, il, usa). a paired t-test was used to determine the blood pressure differences between the two groups. a one-way analysis of variance (anova) was used to compare the horticultural and control groups separately to study the significant differences in the pre- and posttests’ alpha and beta mean values. a two-way repeated measure anova was used to check whether there were any statistically significant differences between the horticultural and control groups’ pretests and posttests changes in the alpha and beta mean values. for the physiological data, statistical significance was defined as �푃 < . . for the psychological data, a wilcoxon signed-rank test was used, and statistical significance was defined as �푃 < . . . results significant differences (�푃 < . ) were observed in the systolic and diastolic blood pressure (mmh between the horticultural and control groups ( . ± . ; . ± . ; �푃 = . ; . ± . ; . ± . ; �푃 = . ). however, no significant differ- ence was found in the pulse rate (bpm) between the two groups ( . ± . ; . ± . ; �푃 = . ) (figure ). no significant dif- ferences were observed between the horticultural group and the control group in the participants’ relaxation, based on a one-way anova that compared the alpha mean values between the groups on the pretest (�퐹 = . , �푃 = . ). however, the results of the posttest indicated that the control group had a drop in the participants’ relaxation based on the alpha mean values. furthermore, a one- way anova indicated that this drop in the alpha mean values by the control group over the pre- and posttests’ duration was significant (�퐹 = . , �푃 < . ). in contrast, the horticultural group had a significant increase in the participants’ relaxation, based on a one-way anova of the alpha mean values over the pre- and posttest duration (�퐹 = . , �푃 = . ). however, a two-way anova indicated that the pre- and posttests variations in the participants’ relaxation, based on (a) (b) figure : photographs of experiments (a) a subject doing control activity (b) a subject doing horticultural activity. discrete dynamics in nature and society . discussion in this experiment, we investigated the relaxation effects of a horticultural activity by measuring and comparing the partic- ipants’ psychological and physiological responses between two tasks: a flower basket making activity by using real flowers and a computer task. blood pressure was significantly decreased in the horticultural activity than in the control activity. �e lower blood pressure indicates that interaction with plants has a ben- eficial effect on adults. studies on human-plant interaction have indicated that direct or indirect contact with plants or natural surroundings can have a greater beneficial effect on people’s well-being [ , , ]. a comparison of blood pressure finds that the horticultural activity has a positive effect on mental stress that increases when a human is exposed to a stressor. �e findings of this experiment agree with a previous study that reported that plant activity reduces stress [ ]. �e findings of the eegs show that plants have a greater relaxing effect on the brain by enhancing brain activity, which changes when a person connects to a stressor. in this experiment, the value of the alpha brainwaves increases a�er the horticultural activity, while a lower alpha brainwave value is observed a�er the control activ- ity. �e increase in alpha brainwaves clearly shows that the participants were mentally relaxed; however, lower alpha brain- waves indicated the condition of stress. studies on eegs have reported that an increase in mental workload caused the alpha waves to decrease or disappear [ ]. additionally, alpha waves are associated with relaxation and mental coordination [ , ]. previous plant studies with eegs have reported that an increase of satisfaction or relaxation causes increased alpha and beta brainwave activity [ ]. moreover, another experiment regard- ing horticultural activities with and without plants reported that the ratio of both the alpha and beta brainwaves significantly increased when subjects closed their eyes only in the plant group [ ]. �us, plants have strong effects on the brain by changing the brainwave activity. furthermore, the value of the beta brainwaves increases a�er the horticultural activity, while lower beta brainwaves are observed a�er the control activity. the alpha mean values, for the horticultural group were signif- icantly greater than the pre- and posttests variations in the participants’ relaxation, based on the alpha mean values, for the control group (�퐹 = . , �푃 < . ). similarly, no significant differences were observed between the horticultural group and the control group in the participants’ attention, based on a one-way anova that compared the beta mean values between the groups on the pretest (�퐹 = . , �푃 = . ). moreover, the results of the posttest indicated that the control group had a drop in the participants’ attention based on the beta mean values. furthermore, a one-way anova indicated that this drop in the beta mean values by the control group over the pre- and posttests’ duration was not significant (�퐹 = . , �푃 = . ). furthermore, the results of the posttest indicated that the horticultural group had an increase in the participants’ attention based on the beta mean values. however, based on a one-way anova, the horticultural group beta mean values over the pre- and posttest durations were not significant (�퐹 = . , �푃 = . ). a two-way anova indicated that the pre- and posttests variations in the participants’ attention, that were based on the beta mean values, for the horticultural group were significantly greater than the pre- and posttests variations in the participants’ attention, that were based on the beta mean values, for the control group (�퐹 = . , �푃 = . ). according to the stai data, the subjects’ elings during the horticultural task (which used real flowers) were different from their feelings during the control task (computer task). �ere were significant differences between the two tasks in the total anxiety score, which was measured before and a�er the completion of the -min. tasks. as shown in figure , the level of anxiety a�er the horticultural activity was significantly lower than the level of anxiety a�er the control activity (horticultural group; . ± . ; control group; . ± . ; �푃 = . . however, there was no significant difference in the baseline (before the activities), which suggests that the horti- cultural activity may have a better effect in lowering anxiety in adults. systolic diastolic bl oo d pr es su re (m m h g) control group horticultural group ∗ ∗ ∗ figure :  comparison of blood pressure data between the horticultural group and control group. �푁 = : mean ± se. ∗∗�푃 < . : determined using a paired t-test. sc or e before a�er control group horticultural group ∗ figure :  comparison of pretest/posttest stai data between the horticultural group and the control group. �푁 = : mean ± se. ∗�푃 < . : determined using a paired t-test. discrete dynamics in nature and society conflicts of interest authors declare that they have no conflicts of interests. authors’ contributions jiang tao and ahmad hassan worked equally as a first author and were responsible for data obtaining, statistical inquiry and article development. prof. chen qibing and prof. liu yinggao supervised the experiment. guo li, mingyan jiang, deng li, li nian, lv bing-yang, zhong ziqin helped during the experiment. all authors read and approved the final manuscript. acknowledgments in addition, we appreciate the help of shu li, li yuting junzhuo li, shang guan ziyue, cheng xinyi wang yiyan, muhammad tahir, muhammad sohaib tahir and muhammad salman tahir for assistance. �is study was sponsored by the national natural science foundation of china (no. ), the guizhou university high level scientific research foundation for the introduction of talent (no. – ), and the national key r&d program of china ( yfd ). references [ ] e. friedmann and s. a. �omas, “pet ownership, social support, and one-year survival a�er acute myocardial infarction in the cardiac arrhythmia suppression trial (cast),” �e american journal of cardiology, vol. , no. , pp. – , . 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[ ] v. i. lohr and c. h. pearson-mims, “children’s active and passive interactions with plants influence their attitudes and actions toward trees and gardening as adults,” horttechnology, vol. , no. , pp. – , . 	psychological and physiological relaxation induced by nature-working with ornamental plants 	 . introduction 	 . overview of electroencephalograms (eeg) and brainwaves 	 . materials and methods 	 . . participants 	 . . materials 	 . . protocol 	 . . measurements 	 . . statistical analysis 	 . results 	 . discussion 	 . conclusion 	data availability 	ethical approval 	consent 	conflicts of interest 	authors’ contributions 	acknowledgments 	references _ _abstract_service.pdf, page @ preflight ( ) abstract service forsch komplementmed ; : – © s. karger gmbh, freiburg accessible online at: www.karger.com/fok fax + information@karger.de www.karger.com morey mc, snyder dc, sloane r, cohen hc, peterson b, hartman tj, miller p, mitchell dc, demark-wahnefried w: effects of home-based diet and exercise on functional outcomes among older, overweight long-term cancer survivors. a randomized controlled trial. jama ; : – . context: five-year survival rates for early stage colorectal, breast, and prostate cancer currently exceed % and are increasing. cancer survi- vors are at greater risk for second malignancies, other comorbidities, and accelerated functional decline. lifestyle interventions may provide bene- fit, but it is unknown whether long-term cancer survivors can modify their lifestyle behaviors sufficiently to improve functional status. objective: to determine whether a telephone counseling and mailed print material-based diet and exercise intervention is effective in reorient- ing functional decline in older, overweight cancer survivors. design, setting, and participants: randomized controlled trial of overweight (body mass index ≥ and < ), long-term (≥ years) survi- vors (aged – years) of colorectal, breast, and prostate cancer, who were randomly assigned to an intervention group (n = ) or delayed in- tervention (control) group (n = ) in canada, the united kingdom, and us states. individuals were recruited for the reach out to enhance wellness (renew) trial from july , , through may , . intervention: a -month, home-based tailored program of telephone counseling and mailed materials promoting exercise, improved diet qual- ity, and modest weight loss. the control group was wait-listed for months. main outcome measures: change in self-reported physical function on the short-form physical function subscale (score range, – ; a high score indicates better functioning) from baseline to months was the primary end point. secondary outcomes included changes in function on the basic and advanced lower extremity function subscales of the late life function and disability index (score range, – ), physical activity, body mass index, and overall health-related quality of life. results: the mean baseline short-form physical function score was . . at the -month follow-up, the mean function scores declined less rapidly in the intervention group (– . ; % confidence interval [ci], – . to – . ) compared with the control group (– . ; % ci, – . to – . ) (p = . ). the mean baseline basic lower extremity function score was . . the mean changes in basic lower extremity function were . ( % ci, – . to . ) in the intervention group compared with – . ( % ci, – . to – . ) in the control group (p = . ). physical activity, dietary behaviors, and overall quality of life increased significantly in the intervention group compared with the control group, and weight loss also was greater ( . kg [ % ci, . to . kg] vs . kg [ % ci, . to . kg], respectively; p < . ). conclusion: among older, long-term survivors of colorectal, breast, and prostate cancer, a diet and exercise intervention reduced the rate of self-reported functional decline compared with no intervention. coakley ab, mahoney ek: creating a therapeutic and healing environment with a pet therapy program. complement ther clin pract ; : – . background: hospitalized patients encounter stressors that impact their experience and recovery. there is a need for theoretically-based, empiri- cally supported nursing interventions to create a therapeutic and healing environment that decrease stress and improve patients’ experiences. purpose: to determine whether pet therapy interventions improve physiological, behavioral and mood outcomes and experiences of hospi- talized patients. methods: a single group pre-post-quasi-experimental design with mixed methods was used in hospitalized patients. paired t-tests were used to evaluate changes from baseline following a pet therapy interventi- on. qualitative data were analyzed using content analysis. results: compared with baseline, patients had significant decreases in pain, respiratory rate and negative mood state and a significant increase in perceived energy level. quantitative and qualitative findings provide support for decreased tension/anxiety and fatigue/inertia and improved overall mood. conclusions: pet therapy is a low-tech, low-cost therapy that improved mood and was meaningful to hospitalized patients. park je, lee ms, jung s, kim a, kang k, choi j, park j, choi sm: moxibustion for treating menopausal hot flashes: a randomized clinical trial. menopause ; : – . objective: a hot flash is a general postmenopausal symptom experienced by approximately % of climacteric women. women often turn to com- plementary and alternative medicines to relieve hot flashes. moxibustion latest publications you should not miss selected by bettina reiter wien forsch komplementmed ; : – abstract service is one such medication. the aim of this study was to evaluate the effect of moxibustion on hot flashes in perimenopausal and postmenopausal women. methods: fifty-one participants were randomly assigned into three groups, namely, moxibustion , moxibustion , and waiting list (control). the moxibustion groups received sessions of moxibustion treatment for weeks at acupuncture points. our protocol was supported by evi- dence from clinical experts (moxa ) or published literature (moxa ), and we followed all participants for an additional weeks after the end of the study. our primary outcome measures were frequency and severity of hot flashes. secondary outcome parameters included quality of life (me- nopausal-specific quality of life scale) and menopause rating scale. results: fifty-one women participated in our study. by week , the dif- ference in severity and frequency of hot flashes had become statistically significant between the treatment groups and the control participants. in addition, there was a statistically significant difference in menopausal- specific quality of life scale scores between treatment group and the other groups. conclusions: our results suggest that moxibustion reduces both the frequency and severity of menopausal hot flashes as compared with those in control participants. we would recommend further studies with larger samples and possibly including placebo controls. tarner ih, muller-ladner u, uhlemann c, lange u: the effect of mild whole-body hyperthermia on systemic levels of tnf-alpha, il- beta, and il- in pa- tients with ankylosing spondylitis. clin rheumatol ; : – . serial mild whole-body hyperthermia is a widely used balneotherapy mo- dality for clinically inactive ankylosing spondylitis (as) in rehabilitative medicine. thus far, the mechanisms of its favorable influence on the sym- ptoms of as are not completely understood. we therefore analyzed the effect of mild whole-body hyperthermia on the systemic levels of pivotal proinflammatory cytokines. twelve male subjects with as and healthy control subjects received nine cycles of whole-body hyperthermia (target body core temperature, . degrees c; duration, min). serum samples were taken at the beginning of the last cycle and at , , and h for measurement of tumor necrosis factor alpha, interleukin beta and inter- leukin . significant differences of cytokine levels were found between both groups. in as patients, hyperthermia caused a significant reduction of all cytokines by – %. thus, serial mild whole-body hyperthermia in as results in heat-induced changes of the proinflammatory cytokine net- work. vol. no. i n f e c t i o n c o n t r o l and hospital epidkmioloc;y letter t o t h e e d i t o r pasteurella multocida peritonitis: another risk of animal-assisted therapy to the editor: pasteurella multocida is primari- ly a pathogen of animals but has been implicated in a range of human dis- eases. it has been estimated that as many as % of dogs and % of cats are colonized with this organism, typ- ically in the respiratory and gastroin- testinal tracts. the most common method of zoonotic transmission is via a bite from an infected dog or cat. infection leads to an acute onset of redness, swelling, and pain within hours of the bite. infection of peri- toneal fluid has been described in the nephrology literature, usually as a result of a cat licking or biting the tubing of a patient on continu- ous ambulatory peritoneal dialysis (capd). a -year-old woman presented to the emergency department with a -day history of fever and chills accompanied by general abdominal discomfort without nausea or vomit- ing. she had end-stage renal failure on maintenance peritoneal dialysis for years. her blood pressure was / mm hg, her pulse rate was beats per minute, her respiratory rate was breaths per minute, and her body temperature was . ° c. on physical examination, her liver and spleen were normal, there was no lymphadenopathy noted, and there was no evidence of any rash, scratches, or bites. the abdomen was not distended but was diffusely tender to light palpation with dimin- ished bowel sounds noted. there was rebound tenderness. a complete blood cell count revealed the follow- ing: white blood cell count, . x /l with % neutrophils; hemo- globin, . mg/dl; hematocrit, %; and platelet count, x /l. the peritoneal dialysis fluid was cloudy with , white blood cells/ul ( % neutrophils) and red blood cells/ul. gram stain of the dialysis fluid revealed many white blood cells and no organisms. the patient was admitted to the hospital for management of suspected peritonitis. empiric antibiotic therapy, consisting of intraperitoneal cefazolin and gentamicin, was initiated with no improvement. p. multocida was isolat- ed from the peritoneal fluid on day and found to be sensitive to gentam- icin, ciprofloxacin, and trimetho- prim-sulfamethoxazole, and the patient responded to intravenous ampi- cillin. the patient reported that she had a cat, which was, for her, an important source of psychosocial sup- port. she admitted to frequent breaks in handwashing technique, with her cat frequently licking her hands before and during fluid cycling. the cat also displayed his curious nature by habitually investigating the tubing and fluid bags during the cycling process. p. multocida is a gram-negative coccobacillus with bipolar staining properties. it is most frequently asso- ciated with cat and dog bites. the organism grows readily on standard laboratory media with the exception of bile-containing media such as macconkey agar. first-generation cephalosporins, clindamycin, and erythromycin are generally regarded as ineffective in the treatment of infections caused by p. multocida and susceptibility should not be report- ed. at a minimum, antimicrobial susceptibility testing is performed with penicillin (the drug of choice), with consideration of testing other antibiotics such as ampicillin, second- generation cephalosporins, trimetho- prim-sulfamethoxazole, tetracycline, and ciprofloxacin. given the polymi- crobial nature of the typical animal bite, therapy is often initiated with amoxicillin-clavulanate or cefurox- ime. this case illustrates the poten- tial for zoonotic transmission of dis- eases to humans undergoing capd. with the number of patients using at- home cyclers increasing and the num- bers of dogs or cats in the home burgeoning, the clinician must be sus- picious of a pet-acquired illness in a patient with peritonitis. given the proximity of pets to their owners and the natural attraction of a carnivorous animal to human body fluid, it is clear that the supposedly healing touch of a dog's or cat's tongue could be fatal for a patient undergoing capd. this case emphasizes the importance of thorough handwashing and the exclu- sion of pets from the room where capd is performed, as there was no reported damage by the cat to the tubing or bags. with the advent of pet therapy in many hospitals and extended-care facilities, an additional concern has arisen for patients exposed to these animals while undergoing capd. the patient and any caregivers who handle the animal should promptly wash their hands after doing so. many extended-care facilities also allow a dog or cat to live permanent- ly among the residents. clinicians must be mindful of the possibility of zoonotic transmission in patients liv- ing in such an environment. certainly clinicians caring for patients undergoing capd must weigh the risks and benefits of plac- ing a patient in a facility with an adopted pet. r e f e r e n c e s . paul rv, rostand sg. cat-bite peritonitis: pasteurella multocida peritonitis following feline contamination of peritoneal dialysis tubing. am j kidney dis ; : - . . frankel ah, cassidy mj. pasteurella multo- cida peritonitis in capd: beware of the cats. pent dial int ; : - . . london rd, bottone ej. pasteurella multo- cida: zoonotic cause of peritonitis in a patient undergoing peritoneal dialysis. am] med ; : - . . kitching ar, macdonald a, hatfield pj. pasteurella multocida infection in continu- ous ambulatory peritoneal dialysis. nzmed j ; : . . uribarri j, bottone ej, london rd. pasteurella multocida peritonitis: are peri- toneal dialysis patients on cyclers at increased risk? pent dial int ; : - . downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core infection control and hospital epidemiology january . loghmanadham m. pasteurella multocida peritonitis in patients undergoing peri- toneal dialysis. pediatr nephrol ; : - . . mackay k, brown l, hudson f. pasteurella multocida peritonitis in peritoneal dialysis patients: beware of the cat. petit dial int ; : - . . joh j, padmanabhan r, bastani b. pasteurella multocida peritonitis following cat bite of peritoneal dialysis tubing: with a brief review of the literature. am j nephrol ; : - . . musio f, tiu a. pasteurella multocida peri- tonitis in peritoneal dialysis. clin nephrol ; : - . . van langenhove g, daelemans r, zachee p, lins rl. pasteurella multocida as a rare cause of peritonitis in peritoneal dialysis. nephron ; : - . . gilbert dn, moellering rc, sande ma the sanford guide to antimicrobial therapy , ed. . hyde park, vt: antimicrobial therapy; . . talan da, citron dm, abrahamian fm, moran gj, goldstein ej. bacteriologic analysis of infected dog and cat bites. n engl j med ; : - . john sillery university of north dakota school of medicine j a m e s hargreaves, do infectious disease altru health system philip marin, md edgar lerma, md nephrology altru health system cathy kuznia, sm (ascp) claudette abbe, mt (ascp) clinical laboratory altru health system grand forks, north dakota downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core untitled an overview of the use of extremity dosemeters in some european countries for medical applications l. donadille ,*, e. carinou , m. ginjaume , j. jankowski , a. rimpler , m. sans merce and f. vanhavere institut de radioprotection et de sûreté nucléaire (irsn), bp , fontenay-aux-roses cedex, france greek atomic energy commission (gaec), ag. paraskevi, attiki, greece institut de tècniques energètiques, universitat politècnica de catalunya (upc), diagonal , barcelona, spain nofer institute of occupational medicine (iom), st teresa street , - lodz, poland bundesamt für strahlenschutz (bfs), köpenicker allee - , berlin, germany institut universitaire de radiophysique appliquée (ira), rue du grand pré , lausanne, switzerland belgian nuclear research centre (sck-cen), boeretang , mol, belgium some medical applications are associated with high doses to the extremities of the staff exposed to ionising radiation. at workplaces in nuclear medicine, interventional radiology, interventional cardiology and brachytherapy, extremities can be the limiting organs as far as regulatory dose limits for workers are concerned. however, although the need for routine extremity monitoring is clear for these applications, no data about the status of routine extremity monitoring reported by different countries was collected and analysed so far, at least at a european level. in this article, data collected from seven european countries are presented. they are compared with extremity doses extracted from dedicated studies published in the literature which were reviewed in a previous publication. the analysis shows that dedicated studies lead to extremity doses significantly higher than the reported doses, suggesting that either the most exposed workers are not monitored, or the dosemeters are not routinely worn or not worn at appropriate positions. introduction according to the council directive / /euratom of the european union( ), which is based on the rec- ommendations of the icrp( ), if the dose to any part of the extremities of a worker is likely to exceed three- tenths of the annual dose limit, an additional dose- meter should be worn on the part of the extremity where the dose is expected to have its highest value. in practice, extremity monitoring is carried out by measuring the personal dose equivalent hp( . ) ( ), considering it as an estimator of the equivalent dose to the skin for which the annual limit is msv. the requirement of finding the area of skin where the dose is maximum is one of the main problems of extremity monitoring and causes severe practical difficulties. in daily practice, when preparing and administering radiopharmaceuticals in nuclear medi- cine (nm), or participating in a complex radiological intervention in interventional radiology/interven- tional cardiology (ir/ic), it is not easy to know which part of the hand will receive the highest dose. moreover, the dose distribution across the hand may vary during a single process as well as when various persons perform the same procedure. another difficulty is that the dosemeter should not disturb manipulations carried out by the medical staff, it has to be compatible with the wearing of gloves and, if needed, with sterilisation protocols. also, the dose- meter has to be adapted to the encountered radiation fields. for these reasons extremities, and particularly hands, are difficult to monitor. the objective of eurados working group (wg ) (funded by the european commission, through the conrad project) was to promote and coordinate research activities for the assessment of occupational exposures to medical staff. sub-group (sg ) of wg dealt with extremity dosimetry of workers in ir, ic, nm and brachytherapy (bt). these activities involve either the direct handling of highly active x, g or bþ/ sources (e.g. mtc, tl, i, f, y in nm, ir, cs in bt), or working close to an x-ray radiation field (typically – kv filtered x-rays in ir and ic). the tasks undertaken by sg were to perform (i) an intercomparison of relevant extremity dosimetry tech- niques; (ii) a thorough literature review of dedicated studies; and (iii) an overview of the use of extremity dosemeters in some european countries. the results of the intercomparison and the literature review have been published( , ), see also reference( ). this article deals with the third task, the dosimetric data overview. data related to the use of extremity dosemeters in the medical field were collected from seven countries. they are presented and compared with the doses extracted from the literature review.*corresponding author: laurent.donadille@irsn.fr # the author . published by oxford university press. all rights reserved. for permissions, please email: journals.permissions@oxfordjournals.org radiation protection dosimetry ( ), vol. , no. , pp. – doi: . /rpd/ncn advance access publication august method extremity dosimetry data were collected from seven countries: switzerland, germany, spain, france, greece, ireland and poland. they were provided by the central register of each country, except for france and poland. the data for france have been obtained from different dosimetry services, nevertheless repre- senting all monitored workers. for poland, they come from one dosimetry service, representing the majority of the workers monitored for extremities. the development of extremity dosimetry has been substantially different in the seven chosen countries. as regards, the position and type of dosemeter (table ), spain and france perform extremity dosimetry using wrist or ring dosemeters, depending on the dosimetry service. nevertheless wrist dose- meters are more widely used than ring ones in these two countries. switzerland, germany, ireland and poland only use ring dosemeters, whereas in greece, wrist dosemeters were used until and from ring dosemeters have been introduced. the monitor- ing period is month for all seven countries. as mentioned earlier, the dosemeter should be placed at the position where the highest value is expected. however, in practice this is not done and often even not possible. in general, the wrist dosemeter is worn at wrist level on one of the two arms, but there is no recommendation about which of the two arms is to be monitored, nor is there on the orientation of the dosemeter. differences in position are even larger in the case of ring dosemeters, since each user decides which finger the dosemeter is worn on and the orien- tation with respect to the radiation source. the data were classified into three categories of medical applications: ir/ic, nm and radiation therapy (th). in general, the group of ir/ic includes any use of x-rays in diagnostics and therapy, with and without fluoroscopy. the group of nm includes workers in conventional diagnostic nm, position emission tomography (pet), therapy with unsealed pharmaceuticals and radiopharmaceutical units. th involves workers in bt and therapy. however, one has to keep in mind that it is difficult to unambiguously identify these three different activities from the col- lected information because, for example, each dosim- etry service has its own labelling method of its customers (workers) which does not strictly correspond to our classification. besides, it was not possible to dis- tinguish between diagnostic and therapeutic nm since most of nm departments have a single subscription to routine extremity dosimetry for both activities. another parameter on which there is no consen- sus is the reporting level. in switzerland, germany, greece and poland, the reporting level is msv, whereas in ireland and spain it is . msv, and between . and . msv for france, depending on the dosimetry service. these differences influence the numerical value of the reported mean doses to the exposed workers. these examples confirm that there is a need for harmonisation of dosimetric practices in extremity monitoring across europe( ). in all cases, the reported mean doses were calculated for monitored workers. of course, the values would have been higher if they had been given for exposed workers (those with doses larger than zero) and, in both cases, they are influenced by the reporting level value. in germany, the exposed workers represent about % of the monitored workers for ir and % of nm workers. in spain, the exposed workers are % of those monitored for ir and % for nm. results and discussion extremity dosimetry in the medical field table shows, for year , the number of moni- tored workers in the medical field in the seven chosen european countries (rounded numbers), together with the fraction who use extremity dosemeters, detailing the type of dosemeter used. french data include veterinary workers, who represent . % of the total. most monitored workers in the medical field wear a table . summary of individual monitoring in the medical field for seven european countries in : france (f), germany (d), greece (gr), ireland (ie), poland (pl) spain (e) and switzerland (ch). country number of whole body monitored workers workers wearing an extremity dosemeter (%) workers wearing (%) ring dosemeter wrist dosemeter f a d gr ie pl e ch aincluding veterinary workers, who represent . % of the total. use of extremity dosemeters for medical applications whole body dosemeter. however, only a minority, between and %, also wear an extremity dosemeter. reported extremity doses the following paragraphs present the registered mean extremity doses classified for the three medical applications (ir/ic, nm and th) considered and the type of dosemeters (ring and wrist) used. although better statistical indicators than the mean doses would be the variability range (minimum and maximum doses) and the median value in each case, these were not provided in the collected data. interventional radiology/cardiology table presents the mean annual extremity doses in ir/ic, for year . mean doses is range from . to . msv. in the countries where both ring and wrist dosimetry are used, mean annual doses measured with a ring dosemeter are always higher than those obtained with a wrist dosemeter, differ- ences are a factor of and for spain and france, respectively. for greece, the large wrist annual dose is due to two cases of bad practices and is reduced to . msv if they are not considered. the second part of the table indicates the number of workers with a mean annual dose higher than msv and those with a dose higher than msv for the countries which these data were available from. the percentage of monitored workers which represents each category is shown beside. it can be seen that annual extremity doses above msv are found in very few cases only. nuclear medicine table gives the mean annual extremity doses in nm, for year . likewise in table , the number of workers receiving doses higher than and msv is shown. for germany, the classification has to be interpreted in a different way: the number of workers with doses higher than msv ( msv) actually cor- responds to the number with doses higher than msv ( msv). the reported mean annual doses in nm range from . to . msv. in the countries in which both ring and wrist dosemeters are used, mean annual doses measured with a ring dosemeter are about four times higher than those obtained with a wrist one. again, the number of workers with annual doses above msv is very small. when comparing the mean doses derived from ring dosemeters for nm with those of ir/ic for the same country, it can be observed that the mean doses are higher for nm than for ir/ic. radiation therapy there are very few data available for the extremity doses due to th. table presents the mean annual extremity doses in th for france, germany and ireland for year , together with the number of workers receiving doses higher than and msv in this medical field. as mentioned earlier for germany, this classification is different. reported mean annual doses are between and msv for ring dosemeters and . msv for wrist dosemeters. in france, where both ring and wrist dosemeters are used, mean annual doses measured with a ring dosemeter are about six times higher than those with a wrist one. comparison with data from literature dedicated studies several dedicated studies dealing with the evaluation of extremity doses in different medical applications were published in the literature. they have been reviewed in a recent publication( ). this review table . mean annual extremity doses in ir/ic and number of workers with annual doses above and msv in . type of extremity dosemeter country number of workers wearing extremity dosemeters reporting level (msv) mean annual doses (msv) number of annual doses . msv number of annual doses . msv ring f . – . . — — d . — — ie . . ( %) ( %) pl . — ( %) e . . ( %) ( %) ch . ( %) ( %) wrist f . – . . — — gra . ( %) ( %) e . . ( %) ( %) — indicates no data available. a for greece the mean annual dose is reduced to . msv when two cases of bad-practices are not considered. l. donadille et al. notably highlighted the fact that significant extremity doses can be reached. in ir/ic, most published estimations of annual extremity doses led to levels smaller than the dose limits, but some authors found higher doses than limits. in conventional diagnostic nm (i.e. scintigraphies carried out mainly with mtc), published extrapolations give a range of to more than msv per year. some studies even report annual extremity doses at the area of skin where the maximum dose is up to a few sv. anyhow annual extrapolations published in the literature reached easily few tens to few hundreds msv per year. these observations are in apparent contradiction with the annual reported doses from the seven european countries considered previously. for example, from table , it is shown that the mean annual ring doses range in – msv, with only few cases presenting doses larger than msv. these discrepancies are probably due to the fact that (i) the dosemeters may not be systematically worn; (ii) the most exposed workers may not be monitored; and (iii) the dosemeters may be worn at not adapted positions, leading to significant underes- timations of the doses. conclusions the increasing use of ionising radiation in medicine requires the development of new radiation protection programmes. large differences between mean annual doses reported in national dosimetric data bases and dosimetry services, and measured doses in pilot research studies are found. this shows that the present extremity dose monitoring underestimates the real radiological risk of exposed medical staff and that no particular effort on the identification of the most exposed area is done. nevertheless, the mean values recorded with ring dosemeters indicate that this kind of extremity dosemeters is a better esti- mator of the maximum doses to the extremity than wrist ones. in spite of the difficulties involved in the routine monitoring of extremities, the development of a systematic study which could identify ‘the most exposed area’ for typical or more common activities could enable agreement on general requirements that could be followed by most of the users, and thus ensure adequate harmonisation within the eu member states. table . mean annual extremity doses in nm and number of workers with annual doses above and msv in . type of extremity dosemeter country number of workers wearing extremity dosemeters reporting level (msv) mean annual doses (msv) number of annual doses . msv number of annual doses . msv ring f . – . . — — da . ( %) ( %) ie . . ( %) ( %) pl . — ( %) e . . ( %) ( %) ch ( %) ( %) wrist f . – . . — — gr . ( %) ( %) e . . ( %) ( %) — indicates no data available. afor germany, the number of workers with doses larger than msv ( msv), actually corresponds to number of workers with doses larger than msv ( msv). table . mean annual extremity doses in th and number of workers with annual doses above and msv in . type of extremity dosemeter country number of workers wearing extremity dosemeters reporting level (msv) mean annual doses (msv) number of annual doses . msv number of annual doses . msv ring f . – . — — da ( %) ( . %) ie . . ( %) ( %) wrist f . – . . — — afor germany, the number of workers with doses larger than msv ( msv), actually corresponds to number of workers with doses larger than msv ( msv). use of extremity dosemeters for medical applications finally, it should be pointed out that it would be very desirable to complete with extremity doses general international individual monitoring data- bases, such as unscear, esorex or isoe. acknowledgements the authors acknowledge the representatives of regulatory bodies and dosimetry services for sharing the information used in this article. references . council directive / /euratom of may laying down basic safety standards for the protection of the health of workers and the general public against the dangers arising from ionizing radiations. off. j. eur. commun. l, ( ). . international commission on radiological protection. recommendations of the international commission on radiological protection. icrp publication , annals of the icrp ( – ) (oxford: pergamon press) ( ). . international commission on radiations units and measurements. conversion coefficients for use in radiological protection against external radiations. icru report (bethesda, md : icru publications) ( ). . carinou, e. et al. intercomparison on measurements of the personal dose equivalent, hp( . ), by extremity ring dosemeters in medical fields. radiat. meas. , – ( ). . vanhavere, f., carinou, e., donadille, l., ginjaume, m., jankowski, j., rimpler, a. and sans merce, m. an overview on extremity dosimetry in medical applications. radiat. prot. dosim. , – ( ). . ginjaume, m. et al. extremity ring dosimetry intercom- parison in reference and workplace fields. radiat. prot. dosim. ( ) (this volume). . kamenopoulou, v. et al. aspects of harmonisation of individual monitoring for external radiation in europe: conclusions of a eurados action. radiat. prot. dosim. , – ( ). l. donadille et al. 	introduction 	method 	results and discussion 	extremity dosimetry in the medical field 	reported extremity doses 	interventional radiology/cardiology 	nuclear medicine 	radiation therapy 	comparison with data from literature dedicated studies 	conclusions 	acknowledgements 	references page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue complimentary care: opportunity to explore non-drug pain management ak mohiuddin assistant professor, department of pharmacy, world university of bangladesh, dhaka, bangladesh email: trymohi@gmail.com doi: http://doi.org/ . /zenodo. abstract aristotle ( th century b.c.) defined pain as emotion, being the opposite of pleasure. whereas, buddha stated “pain is the outcome of sin”, as evidence that an individual was possessed by demons. in some religions it is the cost of attachment. spiritual counseling thus may be more of a preference than medical management. many non-physiologic factors (psychological, familial and societal attitudes, life stressors, and cultural or spiritual) contributing to the experience of and response to pain. emotional stress, for example, anxiety and depression assume a key job in understanding of agony. endless agony is related with expanded dimensions of burdensome side effects, anxiety, and insomnia paying little heed to disability status. it has both modifiable factors (mental health, co-morbidities, smoking, alcohol, obesity, physical activity/exercise, sleep, nutrition, economic status and occupational) and non-modifiable factors (age, sex, cultural and socioeconomic background, history of trauma/ injury/ interpersonal violence, heritage). the relationship between increased bmi and chronic pain in adults seems intuitive and may be related, in part, to increased weight- bearing on joints, reduced physical activity and deconditioning. patient with physical disabilities may have co-occurring chronic pain, but the prevalence and specific associated factors are unknown. neuropathic pain (nep) can be the result of a variety of conditions, including metabolic disease, infection, malignancy, trauma, medications, and toxins; estimates of % among those with chronic pain. chronic pain affects % of the european population and is commoner in women, older people, and with relative deprivation. its administration in the network remains commonly unacceptable, somewhat as a result of absence of proof for successful intercessions. additionally, family and guardians' convictions and demeanors towards torment, either decidedly and contrarily to endure and express torment are imperative. hazard factors incorporate socio-demographic, clinical, psychological, and biological factors. pain increases depression risk - -fold. pain, rather than chronic disease, is associated with the recurrence of depressive and anxiety disorders; – % of chronic pain patients report insomnia of a severity that warrants clinical attention. it is estimated that approximately one in five of the adult population in europe suffers chronic pain, which is therefore more prevalent than asthma or diabetes. chronic pain has long-term biological, psychological and social causes and consequences that are important in prevention and management. keywords: pain, patient, cancer, fibromyalgia, osteoarthritis, surgical pain introduction pain is an important determinant of hrqol. unfortunately, the experience of pain is frequently characterized by undue physical, psychological, social, and financial suffering. adults who reported experiencing a pain condition in the prior month were found to have greater work productivity loss and hru, including hcp and er visits, and hospitalizations, than controls. indirect costs due to work impairment, early retirement, and page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue disability appear to account for much of the financial burden and hospitalizations being the greatest factor affecting direct costs. inadequately controlled intense postoperative torment is related with expanded dismalness, utilitarian and personal satisfaction impedance, deferred recuperation time, delayed span of narcotic use, and higher medicinal services costs. traditional opioids remain the standard of consideration for the administration of intense postoperative torment; nonetheless, the danger of narcotic related unfavorable occasions can restrict ideal dosing for absence of pain, prompting inadequately controlled intense postoperative torment. danger of conventional agony regulation with torment executioners are all around announced and lethal impacts and potential reliance of manufactured opioids are not totally seen yet. deaths from overdoses of opioids and sedatives had extremely substantial increments in the united states somewhere in the range of and , an example not seen before ever. acclaimed big names like bruce lee, chris penn, elvis presley, heath ledger, anna nicole smith passed on from narcotic overdose. the monetary weight of medicine narcotic overdose, misuse and reliance is assessed to be $ . billion every year in the united states. keeping up spotlight on biomedical medicines, including drugs, has constrained achievement in interminable agony. in addition, a substantial us outpatient consider found that just . % of interminable agony meetings included torment pros. dynamic self-administration and solid way of life decisions are crucial to tending to multisystem unpredictability and bridling neuroplasticity in unending torment. pain relieving pharmaceutical medications are generally connected with an assortment of unfriendly reactions, for example, constipation, urinary retention, nausea, sedation, respiratory depression, myoclonus, delirium, sexual dysfunction, and hyperalgesia. using uropp to manage postsurgical pain after discharge did not result in any negative health consequences. these instances clearly reveal importance of understanding current evidence on noninvasive no pharmacological treatment of chronic pain. consensus guidelines recommend multi- modal chronic pain treatment with increased uptake of npms. the challenge of achieving adequate pain control without adverse side effects further compounds the problem and provides rationale for seeking complementary medicine alternatives. figure : graphical abstract page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue over million people in the us (that is one in every four americans) have experienced pain that lasts longer than one day. millions more suffer from acute pain every day. according to recent statistics put forth by the national institutes of health, “pain affects more americans than diabetes, heart disease, and cancer combined.” (source: dr. veronique desaulniers. in pain? natural pain management techniques to consider. web the truth about cancer october , ) highlights . the costs associated with chronic pain incurs an annual cost of $ billion by the us population. . approximately to % of the western population will develop low back pain at least once during their lifetime. . in france, work productivity loss contributed almost % of the total costs incurred by patients with fibromyalgia . pain killers are usually associated with a variety of adverse side effects, such as constipation, urinary retention, nausea, sedation, respiratory depression, myoclonus, delirium, sexual dysfunction, and hyperalgesia. . the economic burden of prescription opioid overdose, abuse and dependency is estimated to be $ . billion each year in the united states. . chronic pain affects % of the european population and is commoner in women, older people, and with relative deprivation. . neuropathic pain (nep) estimates of % among those with chronic pain. . asia, africa, and latin america are collectively home to more than % of cancer patients; with more than half of global cancer-related mortalities occurring in asia alone. . cancer pain is prevalent in almost % of all cancer patients and more than % of patients with advanced cancer. . postoperative pain is not adequately managed in greater than % of patients in the us. . the economic burden of migraine in the united states was $ billion in . . mild -to-moderate pain may be relieved by non-drug techniques alone. moderate- to-severe pain may require medication in addition to nondrug techniques . non-drug techniques can decrease pain intensity and can decrease awareness of pain to enable better coping some have been proven to work . public and private insurers have not yet widely adopted payor policies that are consistent with the acp guideline, national pain strategy, and reported patient preference . it has been estimated that . % of men and . % of women who aged – years had abdominal aortic aneurysm (aaa). furthermore, evidence has revealed that approximately , deaths were attributed to aaa each year in the united states. . chronic postsurgical pain (cpsp) reported %– % following limb amputation, %– % following mastectomy, %– % after cardiac surgery, %– % after thoracotomy, and %– % following hernia repair. . companion of choice at birth increases the likelihood of vaginal births, reduces the need for caesarean sections, the use of forceps or vacuum during vaginal births, need to use pain medications during labor, shortens the duration of labor, improves women’s satisfaction with care and improves apgar scores. . an -week moderate intensity aerobic exercise at %– % of heart rate reserve combined with conventional physiotherapy, significantly reduced nearly % non-specific chronic low back pain (nsclbp). page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue . of those who suffer from hemiplegic shoulder pain (hsp), up to % report moderate to severe pain with a third refractory to available treatments. . tens as an adjunct is effective in reducing lower limb spasticity when applied for more than minutes over nerve or muscle belly in chronic stroke survivors. . although acupuncture is widely used to manage chronic pain, it remains highly controversial, largely due to the lack of a clear mechanism. . physical therapy should strongly be considered for the management of chronic pain to gradually increase flexibility and strength. . despite a number of reports and reviews supporting efficacy of yoga in health care, the awareness and integration of yoga in conventional healthcare remain limited. . an -week yoga intervention resulted in improvement in pain and quality of life scores compared to the control group that was treated with nsaids. . modern medical system suggests complementary and alternative medicine (cam) and pharmacotherapy together, instead of long-term use of pain killers alone. figure : pain cycle when a person gets injured, the common response to pain is to guard their muscles. over time, however, that guarding pattern, combined with fear, interferes with mobility—and when the patient reduces mobility, that in turn can cause more pain leading to increased lack of mobility, often including anger, frustration, and a sense of helplessness—truly a vicious cycle. early intervention is really the key to prevent the onset of the cycle of chronic pain. if an injury is sustained—perhaps from a fall— and it still hurts a week after the event, certainly it should be assessed. it may, as the result of this assessment, recommended a course of treatment, or refer the patient to a massage therapist, a physical therapist, or an orthopedic surgeon or neurosurgeon, depending on the type and severity of the injury (source: duncan ca. the goal: break the chronic pain cycle. web health & healing online) prevalence and economic burden of chronic pain over million americans are living with chronic pain, and pain is the most common reason that patients seek medical attention [ ]. in france, work productivity loss contributed almost % page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue of the total costs incurred by patients with fibromyalgia [ ]. chronic uncomplicated neck pain, back pain, and lower back pain, with incidences of %, . % and %, respectively [ ]. in a canadian study of patients waiting for multidisciplinary pain treatment, direct and indirect costs were can$ , with time costs accounting for % of overall total costs [ ]. the us spent . % of it ' s gdp on healthcare in , expected to increase to % or higher by [ , ]. the direct and indirect costs associated with chronic pain from any cause in the usa are estimated to range from us$ to us$ billion yearly, which is almost twice as much as for cardiovascular diseases or cancer [ ]. however, it affects nearly of adults and incurs an annual cost of $ billion, found in another study [ ]. these cost estimates are proportionally similar to those of european countries such as ireland (€ . billion per year) and sweden (€ billion per year). approximately to % of the western population will develop lbp at least once during their lifetime. of the people that consult their general practitioner for low back pain, one year later about % still report pain [ ]. more than % pregnant women suffer from lbp during their pregnancy and such incidence has been reported as nearly %. such painful condition can result in a long-term pain and disability after the delivery [ - ]. pain is a common complication after sci with prevalence of to %, and almost % of this pain are diagnosed as neuropathic pain. the intensity of the pain varies amongst these patients and it has been reported that . % of patients with spinal cord injuries have moderate to severe pain [ ]. asia, africa, and latin america are collectively home to more than % of cancer patients; with more than half of global cancer-related mortalities occurring in asia alone [ ]. studies have shown that at least – % of cancer pain was not adequately relieved by application of the analgesic ladder [ ]. endometriosis-associated pain (eap) has been reported that about % to % women (manifested as dysmenorrhea, non-menstrual pelvic pain, and dyspareunia) [ ]. cancer pain is prevalent in almost % of all cancer patients and more than % of patients with advanced cancer. about half of patients suffer with advanced cancer experience moderate-to-severe pain, while almost a quarter of patients suffer with more severe pain [ ]. pain is also associated with cancer treatment with more than % of patients enduring moderate-to-severe pain during treatment [ ]. postoperative pain is not adequately managed in greater than % of patients in the us, although rates vary depending on such factors as type of surgery performed, analgesic/anesthetic intervention used, and time elapsed after surgery [ ]. chronic orchialgia is defined as testicular pain, which may be either unilateral or bilateral, lasting for more than months it is estimated that % of chronic orchialgia cases are idiopathic [ ]. migraine is now ranked as the second most disabling disorder worldwide reported by the global burden of disease study [ ]. the prevalence and burden of self-reported migraine and severe headache in the us adult population is high, affecting roughly out of every american and % women over a -month period. headache is consistently the fourth or fifth most common reason for visits to the emergency department, accounting for roughly % of all ed visits annually. in reproductive aged women, headache is the third leading cause of emergency department visits [ ]. the economic burden of migraine in the united states is substantial. in , these direct and indirect costs amounted to an estimated total annual cost of $ billion [ ]. the incidence rate of mm is three times higher in more developed countries compared to less-developed countries. the bone tissue destruction in mm results in bone pain, pathological fractures, and less frequently spinal cord compression [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue exhibit : pathophysiologic consequences of unrelieved pain [ - ] immune system decreased natural killer cell number, function and activity. can lead to death. pulmonary system reflex muscle spasm leads to splinting which decreases pulmonary vital capacity, functional residual capacity, alveolar ventilation. leads to atelectasis, which often is followed by pneumonia and hypoxemia. gi system increased sympathetic activity, which increases gi secretions and smooth muscle sphincter tone decreases intestinal motility. leads to gastric stasis and paralytic ileus. cvs sympathetic over activity which increases heart rate (decreased o to heart), peripheral resistance, bp, cardiac output, and o use. leads to hypoxemia and ischemia, especially of the heart and peripheral tissues. musculoskeletal system segmental and supra segmental reflexes with increased muscle spasm leads to impaired muscle metabolism and to muscle atrophy. psychologic consequences anxiety, fear, depression, distress, and suffering, hopelessness, helplessness and a decreased will to live (wish for assisted suicide or euthanasia). neuronal plasticity primary and secondary hyperalgesia with enabled nmda receptors and aberrant communication of neurons in the peripheral and central nervous system. figure : pain and disability driver management model (a) refers to more common and/or modifiable elements; (b) refers to elements that are more complex and less modifiable, and that will prompt more aggressive or require interdisciplinary care to effectively address the problematic domain. abbreviations: rtw, return to work; msk, musculoskeletal. patients present with certain physical and/or mental health comorbidities that can influence other domains driving symptom severity and disability. musculoskeletal conditions such as low back pain, joint pain, arthritis, and rheumatism are the leading causes of disability in people during their working years. notwithstanding its importance as a personal and clinical issue, chronic pain has turned into a sociopolitical and financial issue for open and private disability safety net providers. in spite of the fact that the expenses to debilitated people of their decreased prosperity can't be precisely estimated, disability program consumptions can be evaluated. there are numerous projects and arrangements to serve handicapped specialists. they contrast as far as their qualification criteria, the degree to which the receipt of page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue advantages is liable to a methods test, the cutoff points on the dimension of market earnings allowed for continuation of benefits, and the degree to which these benefits are taxable (source: institute of medicine (us) committee on pain, disability, and chronic illness behavior; osterweis m, kleinman a, mechanic d, editors. pain and disability: clinical, behavioral, and public policy perspectives. washington (dc): national academies press (us); . , economic issues and the cost of disability. available from: https://www.ncbi.nlm.nih.gov/books/nbk /?report=classic). potential merits and misunderstandings of non-drug techniques mild -to-moderate pain may be relieved by non-drug techniques alone. moderate- to- severe pain may require medication in addition to nondrug techniques [ ], [ ]. advantages to nondrug interventions are:  low cost and low risk of side effects,  decrease in a patient’s unhelpful emotional reactions (such as anxiety, depression, aggressive behavior)  increase in a patient’s sense of personal control and hope,  better sleep and improved interpersonal relationships.  increase the individual control feeling and decrease the feeling of weakness.  improves the activity level and functional capacity.  reduces the pain behavior and focused pain level.  reduces the needed dosage of analgesic drug s thus decreasing the side effects of the treatment [ ], [ ], [ ]. figure : pathways and brain regions involved in the transmission and modulation of pain signals essential afferent neurons, with their cell bodies in the dorsal root ganglia, or trigeminal ganglion (mouth and face), couple over to auxiliary neurons in the dorsal horn of the spinal line, or the spinal core of the trigeminal complex. the axons of the second request neurons cross the midline and task to the thalamus and an assortment of different focuses in the medulla oblongata, pons and mid mind, page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue including the rostral ventral medulla (rvm) and the periaqueductal grey (pag). third request neurons, with their cell bodies in the thalamus, undertaking to the somatosensory cortex, in charge of the tactile discriminative viewpoints (intensity, location and quality) of pain, and to limbic cortical regions, for example, the front cingulate, isolated, and the prefrontal cortex engaged with the intercession of the full of feeling/emotional segments (aversiveness) of pain. thalamic neurons additionally venture to the amygdala, which thus interfaces with the core component, a locale associated with both pain preparing and the intercession of remuneration inspirational conduct. these various brain regions also give input to the pag, which via the raphe nuclei in the rvm, and to the locus coeruleus, send descending pain modulatory projections back to the first synapses in the afferent pathways (source: brodin e, ernberg m, olgart l. neurobiology: general considerations - from acute to chronic pain. nor tannlegeforening tid. ; : - ) while, potential demerits include not as well researched (a technique that works well for one person may not work well for another) [ ]. misunderstandings may keep patients and staff from trying the techniques but truth is: some patients may find the techniques burdensome or stressful, advanced techniques require special training (music and art therapy, therapeutic massage) [ ]; non-drug techniques can decrease pain intensity and can decrease awareness of pain to enable better coping some have been proven to work; others are less well studied [ ]. moderate- to-severe pain typically requires a combination of medication and nondrug therapy; hot and cold can work when applied to the opposite side of the body, or at a different site [ ], enabling these techniques to be used when radiation therapy or open wounds prohibit use at the site of pain distraction can decrease pain and increase ability to cope; successful distraction does not mean pain is not real [ ]. figure : the fear-avoidance model psychological variables assume a noteworthy job in both intense and chronic back pain, and in the change from intense to chronic pain. psychosocial factors have in reality been found to have a more noteworthy effect than biomedical or biomechanical factors on back pain disability. patients with a dread of the long-term outcomes of medical procedure are likewise at expanded danger of long haul pain and poor recuperation. instructing patients and their carers about pain empowers an increasingly inspirational demeanor to pain relief and where conceivable we should endeavor to include patients in their pain the board technique. data can give consolation that the sensations experienced after a system are typical and non-undermining. for instance, following an absolute knee substitution, patients are urged to prepare inside long stretches of medical procedure. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue this might be awkward; however, it is imperative that patients are consoled that pain does not equivalent harm, that it is ordinary to encounter some uneasiness and it doesn't imply that they are endangering their task or that something isn't right. through dynamic inclusion patients build up a more prominent feeling of self- adequacy in regards to treatment and ailment related practices and might be bound to finish on the practitioner’s choices came to. patients who react inactively to pain show more noteworthy distress and disability contrasted with the individuals who endeavor with tackle the issue. assuming some responsibility for the reason for pain or the technique for absence of pain has a valuable impact. social connections can likewise impact pain announcing and disability. the outflows of pain are fortified by the accomplice who acts to ease the patient's conduct action, and this is reflected in the expanded dimension of pain (source: reddi d, curran n chronic pain after surgery: pathophysiology, risk factors and prevention postgraduate medical journal ; : - ). non-drug options of pain management unfortunately, non-pharmacological therapy is seldom used for acute postoperative pain relief, although it is beneficial and devoid of any significant adverse effects. no pharmacologic therapies have demonstrated benefit for acute pain with opioid sparing in hospital settings for inpatient post-operative pain and for acute pain not related to surgery [ , ]. non-pharmacological pain management is the management of pain without medications [ ]. non- pharmacological methods used in pain management can be classified in different ways. in general; they are stated as physical, cognitive, behavioral and other complementary methods or as invasive or -non-invasive methods. this method utilizes ways to alter thoughts and focus concentration to better manage and reduce pain. methods of non- pharmacological pain include:  education and psychological conditioning  hypnosis  comfort therapy  physical and occupational therapy  psychosocial therapy/counseling  neurostimulation  biofeedback techniques  electrical stimulation  meditation [ - ], [ ] exhibit : selected pain terminology [ ], [ ]  pain--an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.  pain from pathogenic/biological origin-- osteoarthritis (oa), rheumatoid arthritis (ra), systemic inflammatory rheumatic diseases, connective tissue diseases, post-herpetic neuralgia, and peripheral neuropathy, which are typically diagnosed via objective biologic or inflammatory markers, radiologic evidence or other identifiable tissue damage.  pain from idiopathic origin, which often rely on subjective patient report, include complex regional pain syndrome (crps), fibromyalgia (fm), chronic widespread pain (cwp), subsets of chronic low back pain (lbp), and chronic pelvic pain (cpp).  nociceptive pain—pain that arises from actual or threatened damage to nonneural tissue and is due to the activation of nociceptors (high threshold sensory receptors of the peripheral somatosensory nervous system that can transduce and encode noxious stimuli). this term, designed to contrast with neuropathic pain, is used to describe pain occurring with a normally functioning somatosensory nervous system as opposed to the abnormal function seen in neuropathic pain.  inflammatory pain—pain in the presence of inflammation that is increased by pressure.  dysfunctional pain—maladaptive pain, typically triggered without an external stimulus, which does not serve a known protective function (e.g., pain associated with fibromyalgia, irritable bowel syndrome, and some types of headache).  neuropathic pain—pain caused by a lesion or disease of the somatosensory nervous system. neuropathic pain is a clinical description (and not a diagnosis) that requires a demonstrable lesion or a disease that satisfies established neurological diagnostic criteria. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue clearly, public and private insurers have not yet widely adopted payor policies that are consistent with the acp guideline, national pain strategy, and reported patient preference. specifically, most health plans surveyed did not have policies in place that ( ) emphasize the use of no pharmacological treatments at the forefront of the patient experience; ( ) provide meaningful levels of coverage for care professionals who focus on guideline- adherent nondrug therapies such as spinal manipulation, exercise, massage, acupuncture, and cognitive behavioral therapy; or ( ) use financial incentives that favor the use of no pharmacologic options over commonly prescribed pharmaceuticals, including opioids [ ]. figure : enhanced recovery for the chronic pain patients strategies implemented preoperatively optimize the patient for surgery. intraoperative and postoperative intercessions proceed a multimodal way to deal with pain the board. preoperative advising for elective systems for the most part happens in the outpatient setting. despite the fact that talk customarily has secured the sort of system and its related dangers, advantages, and options, new rules propose an increasingly careful and extensive methodology is justified. individualized patient-focused training programs positively affect the perioperative page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue course, affecting decreases in preoperative anxiety, narcotic prerequisites, and medical clinic length of remain. prehabilitation is the way toward expanding practical limit before medical procedure so as to moderate the stress of the medical procedure. prehabilitation may include oxygen consuming activity, quality preparing, or useful assignment preparing [source: moulder jk, johnson kp. enhanced recovery after surgery for the patient with chronic pain. obg manag. march; ( )] exhibit : cognitive–emotional drivers [ ] categories operational definition and elements maladaptive cognition cognitive–emotional drivers include maladaptive cognitive strategies toward pain (ie, pain coping, pain catastrophizing), pain-related fears (ie, pain-related anxiety and fear, fear of movement), negative perception of pain/disability and expectations toward pain (ie, illness perception, pain self-efficacy), as well as negative mood (which is distinct from clinical depression). according to the fear-avoidance model, when maladaptive cognitive drivers are not addressed and if pain/disability persists, factors such catastrophizing, illness perceptions, negative emotions, and pain-related fears may lead to the development of maladaptive behaviors (eg, activity avoidance), which, in turn, may contribute to the maintenance of pain-related disability. maladaptive behaviors maladaptive behaviors can be manifested in various ways. for example, they may include “communicative” pain behaviors such as facial expressions (eg, grimacing or wincing) or verbal/paraverbal pain expressions (eg, pain words, grunts, sighs, and moans). they may also include “protective” or “safety” behaviors such as guarding of the back straight while lifting or bending/rubbing the back after performing an activity, strongly bracing before doing a functional task, or even completely avoiding performing a task. in addition to avoidance, displays of “protective/safety” behaviors (eg, guarding, holding, or rubbing the back) or communicative pain behaviors (eg, grimaces) have also been associated with heightened levels of perceived functional disability. maladaptive behaviors are known to be strongly influenced by cognitive–emotional factors; their presence suggests that cognitive– emotional drivers of pain must be assessed and addressed through behavioral or cognitive- behavioral treatment interventions. they are clearly linked to enhanced pain perception, are predictors of long-term disability, and can explain the presence of persistent painful symptoms. as personal factors of an individual, the fourth domain relates to cognitive–emotional drivers, as “maladaptive cognition” (category a) and “maladaptive behaviors” (category b) will undeniably influence the treatment approach. education and psychological conditioning high levels of pain, significant anxiety, or depressive symptoms before surgery put patients at elevated risk for chronic pain and prolonged opioid use following surgery [ ]. preoperative depression has been connected to an assortment of unfavorable results following lumbar combination, including expanded pain, disability, and -day readmission rates. the relationship among depression and narcotic utilize following lumbar combination is progressively applicable given the plague of narcotic maltreatment clearing the nation as of late [ ]. it has been evaluated that . % of men and . % of ladies who matured – years had aaa. moreover, proof has uncovered that around , deaths were ascribed to aaa every year in the united states. more than one-fourth of patients planned for aaa fix may have preoperative anxiety or depression [ ]. current psychological ways to deal with the administration of chronic pain incorporate intercessions that expect to accomplish expanded self-administration, social change, and intellectual change instead of straightforwardly wipe out the locus of pain. as such, they target the frequently overlooked behavioral, emotional, and cognitive components of chronic pain and factors contributing to its maintenance [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : pre- and post-operative education and psychological conditioning individualized education is important for preparing patients for the operation both physically and psychologically. surgeries cause emotional, cognitive and physiological reactions in patients. patients undergoing surgical intervention usually experience worries over outcomes such as becoming permanently disabled, loss of control over their body, loss of working ability, pain, loss of sexual ability, inability to wake up from anesthesia, and fear of death. due to fear and anxiety, majority of patients have difficulty in coping with the operation process. not having information about the diagnosis and treatment methods, patients may experience anxiety, including depression, in the pre- operation period. studies report that with individualized care and education, patients’ anxiety decreases and their satisfaction increases. the individualized education is given to patients before surgery was found to have potential effects on their post-operative pain levels (source: ertürk eb, Ünlü h. effects of pre-operative individualized education on anxiety and pain severity in patients following open-heart surgery. int j health sci (qassim). ; ( ): - .). table : psychological interventions in the management of patients with chronic pain approaches description psychophysiological techniques biofeedback is a learning technique through which patients learn to interpret feedback (in the form of physiological data) regarding certain physiological functions. for example, a biofeedback device may show measurements of muscle tension. biofeedback may help to control pain, including chronic headaches and back pain [ , ]. behavioral approaches (relaxation training) it can help reduce muscle tension and stress, lower blood pressure, and control pain [ ]. diaphragmatic breathing is a basic relaxation technique lowering the harmful effects of the stress hormone cortisol, hr, bp and chances of injuring or wearing out muscles. it helps to cope with the symptoms of ptsd. it improves core muscle stability, body’s ability to tolerate intense exercise [ ]. pmr is a systematic technique used to achieve a deep state of relaxation and has been shown to improve health-related qol in a variety of medical and psychiatric illnesses. it is an effective and widely used strategy for stress relief that creates a state of deep relaxation by involving alternate tensing and relaxing of muscles [ , ]. autogenic training (at) combines passive concentration, visualization and deep breathing techniques, likely to produce specific cognitive effects such as reducing anxiety and enhancing positive mood. the emphasis is to not to control these natural healing systems, but rather to use their intrinsic potentials more fully. autogenic training is the preferred mode of arousal regulation in many european countries [ - ]. visualization/guided imagery is one component of cbt that frequently is used and found effective in fibromyalgia. imagery has been defined as a dynamic, psycho-physiological process in which a person imagines, and experiences, an internal reality in the absence of external stimuli. the guided imagery audio is page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue accompanied by soft background music and directs the visualization and imagination to a pleasant and peaceful place that has meaning for the participant to replace negative or stressful feelings [ , ]. fam of chronic pain is a heuristic most frequently applied in the context of non- operative populations like chronic lbp. the fam is a psychosocial model that seeks to understand the role of cognitive, behavioral, physical, and emotional factors in persistence of pain and disability. fam measures have moderate relationships with preoperative pain and disability. preoperative depression and work-related fear-avoidance beliefs were able to significantly explain the -week clinical outcome variances (leg pain, back pain, and disability) [ , ]. cognitive-behavioral approaches cbt interventions are delivered within a supportive and empathetic environment that strives to understand the patient’s pain from a bio psychosocial perspective and in an integrated manner, most common psychologic intervention for individuals with chronic pain. cbt is generally based on the “abc” model and aims at changing dysfunctional thoughts, emotions, and behaviors. additionally, cbt has been reported to improve quality of life and activities of daily living, chronic headache, facial pain, arthralgia, and fibromyalgia. behavior modification strategies to effectively reduce pain and fatigue, and improve sleep, overall physical function and coping cbt focuses on reducing pain and distress by modifying physical sensations, catastrophic thinking, and maladaptive behaviors. combining cbt approaches for pain and for sleep may produce greater improvements in pain and sleep outcomes compared to either approach in isolation. women benefit more from multimodal pain therapy including cbt-oriented group program than men. cbt had similar effects with fusion spine fusion surgery, but at months the cbt group showed less fear avoidance [ ], [ - ]. acceptance-based approaches acceptance and commitment therapy (act) are the most common of the acceptance-based psychotherapies. act is a relatively newer psychological intervention being implemented in the chronic pain health care setting. act is based on behavioral principles and the psychological flexibility model, and unlike cbt, it does not emphasize the restructuring of distorted or catastrophic cognitions. the goal within act is to reduce the dominance of pain in person’s life through increased psychological flexibility. unlike other approaches, act does not focus on symptom reduction – even though this can happen in act – but on making patients’ responses toward symptoms more successful in relation to their own goals. when used as an adjunctive therapy in pain management, act fosters the possibility of improved pain acceptance, which can have important implications for adaptive recovery in postsurgical patients [ ], [ ], [ ]. pain lasting longer than the normal healing process after surgery is an unwanted adverse event in any operation. cpsp can represent a severe nuisance to patients, leading to functional limitation and psychological trauma, as well as a problem for the operative team in the form of feelings of frustration and disappointment. studies have reported incidences ranging from %– % following limb amputation, %– % following mastectomy, %– % after cardiac surgery, %– % after thoracotomy, and %– % following hernia repair. one reason for this variability is the difference in the time reference considered by each researcher for labeling pain as cpsp (varying from months to year postoperatively). more than a half of cpsp patients have neuropathic pain, the remainder having nociceptive (somatic or visceral) pain. a patient may have different components of pain, and these must be identified for effective management. during the preoperative and early postoperative period, it is very important to provide patient education and counselling about the chances of developing cpsp [ ]. multidisciplinary pain-management programs with psychological approaches, including cbt and mindfulness-based psychotherapy, have shown efficacy as treatments for chronic pain, and show promise as timely interventions in the pre/perioperative periods for the management of psp [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue exhibit : evolution of behavioral psychotherapeutic approaches [ ] behavioral psychotherapy type theoretical background first wave behavioral therapy behavior analysis takes into consideration every behavior, including overt and covert the therapist focuses on specific learned behaviors and how the environment influences such behaviors second wave cognitive behavioral therapy cbt focuses on the development of individual strategies aimed to solve current problems and to change unhelpful patterns in cognitions (i.e., thoughts and beliefs), behaviors, and emotional regulation third wave acceptance and commitment therapy dialectical behavioral therapy integrative behavioral couples’ therapy behavioral activation cognitive behavioral analysis third wave therapies prioritize the holistic promotion of health and well-being and are less focused on reducing psychological and emotional symptoms. these therapies abandon key assumptions associated with traditional cognitive therapy and is informed by emerging research in cognitive psychology and neuroscience. concepts such as metacognition, acceptance, mindfulness, personal values, and spirituality are frequently incorporated into what might otherwise be considered traditional behavioral interventions comfort therapy complementary therapies can increase comfort, decrease pain, promote relaxation and increase the quality of life for hospice patients and their families. therapies can be used individually or in combination. all therapies are individually tailored for each patient to offer unique benefits [ ]. comfort therapy can help improve the quality of life by alleviating symptoms of pain and providing relaxation and comfort. response to treatment or therapy is individual and that what works for some might not be as effective for others [ ]. studies suggest that cat enhance quality of care for patients nearing the end of life. some types of cat are associated with a lessening of symptoms, including anxiety and pain, and improvements in mood and sense of control [ ]. comfort therapy may involve the following: companionship patients with chronic pain from a non-supportive family tended to show more pain behaviors and more emotional distress compared with pain patients coming from supportive families [ ]. due to inadequate knowledge and skill, family caregivers may be unfamiliar with the type of care they must provide or the amount of care needed [ ]. according to the operant conditioning model of chronic pain, both verbal and non-verbal forms of communication are used to convey patients’ desire for support, attention and intimacy, and to elicit empathic responses from others. in turn, affected patients’ communication may be maintained by social reinforcement (e.g. the sympathetic response of significant others) [ ]. who recommend intervention to improve labor outcomes and satisfaction. companion of choice at birth increases the likelihood of vaginal births, therefore reduces the need for caesarean sections and the use of forceps or vacuum during vaginal births. in addition, it reduces the need to use pain medications during labor, it shortens the duration of labor and improves women’s satisfaction with care. it also improves apgar scores (a measure of the physical condition of a newborn infant) of the newborns [ ]. moderate exercise (walk and stretch) physical activity is a well-documented, viable therapeutic modality for chronic pain conditions with beneficial effects on pain, sleep, cognitive function and physical function. alternatively, self- directed physical activity can be inexpensive, requiring minimal resources such as walking around one's page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue neighborhood and home-based programs. quite uniformly, low to moderate intensity exercise defined as - % of maximum heart rate (maxhr) tends to improve chronic pain symptoms [ ], [ ]. exercise is effective for the management of chronic low back pain for up to year after treatment and for fibromyalgia syndrome for up to months [ ]. an - week moderate intensity aerobic exercise intervention at %– % of heart rate reserve combined with conventional physiotherapy, significantly reduced nsclbp by % [ ]. muscle soreness that sometimes occurs with starting a new exercise subsided as the participants adapted to the new activities [ ]. combined training, which included aerobic and resistance exercises for eight months, succeeded in decreasing pain from breast cancer [ ]. numerous helpful projects proposed for painful conditions comprise of non-intrusive treatment programs with preparation, and about % of outpatients and inpatients are alluded to active recuperation programs for painful conditions (primarily neck and low-back pain, lower-appendage osteoarthritis, sports wounds, all out joint substitution, upper-appendage musculoskeletal clutters, fiery joint inflammation). the exercise and mobilization techniques of physical therapy include aerobic training, specific muscular strength exercises, active and passive mobilization, and proprioceptive techniques [ ]. prevalence of knee oa increases with age, ranging from % among those aged – years old to % in those at least years old. these prevalence estimates are expected to increase as the us population continues to age and obesity rates rise. therapeutic exercise is often recommended as a first- line conservative treatment for knee oa [ ]. heat/cold application: superficial heating and cooling of tissues to provide pain relief in low to moderate levels of acute and chronic pain in adults [ ]. naturopathic non-intrusive treatment altogether improves foot usefulness and pain scores in impact point pain. also, rotating packs improve foot usefulness scores [ ]. rcts have demonstrated that heat-wrap treatment gives transient decreases in pain and disability in patients with intense low back pain and gives fundamentally more prominent pain alleviation of doms than does cold treatment [ ]. cryotherapy (the utilization of extraordinary cold in medical procedure or other restorative treatment) and thermotherapy as remedial strategies in the patients with intense and chronic low back pain equally affected assuaging the pain dependent on evaluative and distinct measures [ ]. utilization of virus advances alleviation of pricking pain sensation and concealment of autonomic reactions, and that use of warmth has no such impact [ ]. in the united states, % of patients with low back pain are treated with warming treatment and % with cooling treatment. cooling treatment diminishes tissue blood stream because of vasoconstriction, and that it additionally lessens tissue digestion, oxygen usage, and irritation. cooling treatment diminishes the speed of nerve conduction in shallow tissues by moderating the terminating of muscle axle afferents and reflex reactions, accordingly diminishing muscle fits and pain. use of cooling therapy for musculoskeletal problems can also reduce intake of painkillers because it reduces pain and body fluid penetration [ ]. pain after thoracotomy is probably the most severe pain experienced after surgeries and patients who underwent cardiac surgeries report having most severe pain while coughing and deep breathing. pain was significantly decreased with the use of cold gel packs [ ]. usually the chest tube removal (ctr) has been described as one of the worst experiences by patients in the intensive care unit. regarding the relaxation and cold application methods showed relatively equal effects on reducing the pain owing to ctr [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : essential oils for aromatherapy elective treatments are habitually used to alleviate different indications of patients. they are utilized rather than standard therapeutic medications and elective treatments are particular from correlative drug which is intended to go with, not to supplant, standard restorative practices. aromatherapy is usually used in combination with massage, can successfully treat pain when combined with conventional treatments. additionally, the cost associated with aromatherapy is far less than the cost associated with standard pain management treatment (source: lakhan se, sheafer h, tepper d. the effectiveness of aromatherapy in reducing pain: a systematic review and meta-analysis. pain res treat. ; : ). lotions/massage therapy: therapeutic massage is a cim therapy which involved manipulation of the soft tissue of whole- body areas to bring about generalized improvements in health [ , ]. reflexology treatment consists of massage of the disordered reflex zones. massage is mainly used to promote relaxation, treat painful muscular conditions; it can also foster communication, including decreased stress (and decreased cortisol), improved sleep patterns, and enhanced immune function, [ - ]. the massage group had lower pain and anxiety levels and shorter duration of labor; lower pain than the ultrasound participants and reported greater functional status as measured on the foot and ankle pain assessment; significant improvement was noted for knee arthritis and pelvic (after weeks therapy) pain; immediate reductions in neck pain [ ]. aromatherapy refers to the medicinal or therapeutic use of essential oils absorbed through the skin or olfactory system (although rare phototoxicity and carcinogenicity reported), is used as a part of nursing in many countries including switzerland, germany, england, canada, and america [ - ]. aromatherapy with orange oil can relieve pain in patients with fractured limbs. a study has shown that edible oil of orange can reduce breast pain caused by premenstrual syndrome [ ]. the essential oils rosemary, geranium, lavender, eucalyptus, and chamomile can be safely used by nurses in the clinical setting, if applicable [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : ayurveda massage. (source: healing with ayurvedic herbs | panchakarma treatment centre in croydon london) exhibit . massage techniques [ ]  effleurage—gentle stroking along the length of a muscle  petrissage—pressure applied across the width of a muscle  friction—deep massage applied by circular motions of the thumbs or fingertips  kneading—squeezing across the width of a muscle  tapotement—light slaps or karate chops meditation: mindfulness meditation was introduced as a clinical intervention for conditions such as chronic pain and anxiety in [ ]. chronic pain patients increasingly seek treatment through mindfulness meditation, thought to work by refocusing the mind on the present and increasing awareness of one’s external surroundings and inner sensations, allowing the individual to step back and reframe experiences [ ]. meditation– based interventions improve pain symptomology across a wide spectrum of pain-related disorders, including fibromyalgia, migraine, chronic pelvic pain [ ]. meditation, after the four- session intervention, during noxious heat produced a mean % reduction in pain intensity and % reduction in pain unpleasantness ratings [ ]. a variety of factors are now known to either increase or decrease pain-related brain activation, including: predictive cues, distraction, attention, expectation, beliefs, placebo, hypnosis, stress, anxiety, mood and emotional state [ ]. focused attention (fa), also known shamatha (from sanskrit), is associated with maintaining focus on a specific object, often the changing sensation or flow of the breath or an external object [ ]. by contrast, open monitoring (om), or vipassana (sanskrit translation), is associated with a non-directed acknowledgement of any sensory, emotional or cognitive event that arises in the mind. zen meditation is considered to be one form of om practice [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : anatomy of mind: meditation gives access to most powerful layers of mind (results may vary from person to person). hypnosis has been pragmatically used for limited therapeutic targets, while eastern meditation has much wider philosophical and existential implications, aiming for a radical liberation from all illusions, attachments, suffering and pain. the accessible information on the history, phenomenology, and neuropsychology of spellbinding and reflection demonstrate a few basic highlights, for example, the accompanying: (an) acceptance dependent on centered consideration; (b) ability to achieve a purposeful control of both biologic-substantial exercises and cognizant oblivious procedures. the hypnotic brain can fill in as an approach to tap neurocognitive inquiries and our intellectual tests can thus reveal new insight into the neural bases of mesmerizing. discrete reflective styles are probably going to target distinctive neurodynamic designs. late discoveries accentuate expanded attentional assets enacting the attentional and striking nature systems with rational observation. cognitive and emotional equanimity gives rise to a eudemonic state, made of calm, resilience and stability, readiness to express compassion and empathy, a main goal of buddhist practices. structural changes in gray matter of key areas of the brain involved in learning processes suggest that these skills can be learned through practice. hypnosis and meditation represent two important, historical and influential landmarks of western and eastern civilization and culture respectively (source: de benedittis g. neural mechanisms of hypnosis and meditation. j physiol paris. dec; ( - ): - . doi: . /j.jphysparis. . . . epub nov . review. pubmed pmid: ). music, art, or drama therapy: music is one of a number of non-pharmacological methods of relieving chronic pain, along with exercise and cognitive behavioral therapy, that have been found to be effective in rcts [ ]. vmt may be effective in building essential stepping stones for chronic pain management, namely developing: ) a positive relationship with one’s self; ) enhanced page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue self-efficacy; ) motivation and empowerment to take charge of one’s pain management; and ) renewed social engagement [ ]. the u sequence is a music therapy technique specifically developed for pain management [ , ]. a single session of music therapy is effective in significantly reducing cancer pain when used along with standard palliative care in cancer patients with moderate to severe pain, chronic pain and anxiety/depression, by altering affective, cognitive, and sensory processes, music may decrease pain perception by distraction, change in mood, increased control, use of prior skills, and relaxation, reduces opioid requirements, improve qol [ - ], [ ]. cepeda et al., shows that music therapy was best for short term pain after surgery [ ]. music is expressive; individuals may trigger a variety of emotions through creating music in groups or individually. via its ability to modify the affective or cognitive state of the listener, music can be adapted to function as a behavioral intervention for pain [ ]. tolstoy said that music is the shorthand of emotion, and congreve explained that music has charms to soothe a savage breast [ ]. as a treatment adjuvant to reduce chronic pain in fm, and fm-associated sleep disturbances and increase functional mobility thereby reducing the risk of disability. however, effectiveness is higher when combined with aerobic exercise, which brings about further improvements in quality of life and balance [ - ]. drama therapy made an important contribution to the healthy adjustment of some patients both to hospital life and to acquired disability [ - ]. figure : music therapy: pain management part | michael tyrrell page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue in the uk, music specialists are prepared to ace's dimension and are enlisted with health and care professions council as unified wellbeing experts. aristotle perceived the natural capacity of tunes to outperform "emotions, for example, pity and dread, or excitement," and in this way "mend and sanitize the spirit." the greeks distinguished apollo as the dad of both recuperating and music, nearby his numerous different honors (as god of light, sun, truth, prediction, plague and verse). two doctors acclaimed for utilizing their melodic capacities to actualize medicinal accomplishments portrayed chest percussion. working room is a peaceful spot and genuine that there will be any additional clamor to the diversion and meddle with verbal correspondence between individuals. music is a free method to improve patients stress and pain previously and amid medical procedure. although there isn't enough evidence in order to draw a net conclusion about the effect of music in operating rooms (vahed n, kabiri n, oskouei mm, gavgani vz, khatooni aa, sadooghi n. : the effect of music in operating room: a systematic review. bmj open. ; (suppl ): bmjopen- - . . published feb . doi: . /bmjopen- - . ). expressive writing intervention (ewi) composing expands wellbeing and health in changed ways. people who have expounded on their own horrible encounters show factually noteworthy enhancements in different proportions of physical wellbeing, decreases in visits to doctors, and better safe framework working [ ]. written emotional disclosure in adolescents with recurrent abdominal pain, and anger letter writing in adults with heterogeneous pain may be beneficial. most disclosures of patients with ra were about the daily stress of the disease or other publicly known stressors (e.g., divorce, death of loved ones) rather than private or stigmatized stressors, which might have been more powerful to address [ ]. improved physical symptoms and reduced healthcare utilization in people with colorectal, breast, or prostate cancer and reduction in depressive symptoms, trauma-related cognitions and general behavioral problems in children with post-traumatic stress disorder also reported [ ]. ewi may have a significantly positive impact on the physical health but not the psychological health in bc patients, but this benefit may not last long [ ]. patients with ibs treated with psychological therapy had not only reduced pain and anxiety but also reduced activity of the cingulate cortex and para hippocampal gyrus [ ]. positive expressive writing may also be beneficial to those with musculoskeletal pain. positive writing may be useful to the extent that it increases self-compassion and self-efficacy [ ]. ewi is shown to be an effective intervention to improve qol for chinese-american breast cancer survivors [ ]. a positive effect of expressive disclosure specifically on anxiety and specifically for young adults who were highly emotionally expressive [ ]. ewi had a significant impact on reducing risk of eating pathology in female students and distress/depression during art therapy of infertile women [ , ]. ewi with clinical samples shows potential benefit of written time management for stressed caregivers [ ]. pastor: the pain assessment screening tool and outcomes registry (pastor) is a - -minute survey that produces a comprehensive -page clinician report of a patient's chronic pain. pastor was developed as a direct result of the pmtf recommendations; it is designed to provide an outcomes registry to improve page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue evidence-based decision making by health care providers and to facilitate pain research [ ]. pastor incorporates the dvprs, pain interference assessment, neuropathic pain scale, headache assessment, and patient-defined activity goals. in addition, pastor includes screens for the following conditions: ptsd, anxiety, depression, and alcohol misuse. additional pain correlates including global health, fatigue, satisfaction with social roles, anger, sleep- related impairment, and physical function are also assessed [ , , ]. it uses the computerized adaptive learning system of the nih promis which contains a large, validated databank of patient-reported outcome surveys. pastor serves two major purposes: first, it collects actionable information that can be used by clinicians to assess response to treatment and to guide pain management; and second, when aggregated from large numbers of respondents, it can identify best clinical practices [ , , ]. promis pain interference (pi) scores was a superior tool to gauge a patient's preoperative level of pain and functional ability compared to nprs in foot and ankle patients [ ]. pet therapy: pets provide companionship, unconditional love, and joy. for those with chronic pain, pets can give their owners even more [ ]. according to the delta society (non- profit), pets decrease feelings of depression, loneliness, and isolation. pets may also be able to do your heart some good — they are credited with lowering blood pressure and cholesterol [ ]. the american veterinary medical association classifies therapeutic animal assisted interventions (aai) into three categories: animal assisted activities (aaa) that utilize companion animals; animal assisted therapy (aat) that utilizes therapy animals and service animal programs (sap) that utilize service animals [ ]. therapy dog visits in an outpatient setting can provide significant reduction in pain and emotional distress for chronic pain patients [ ]. reductions in measures of cardiovascular stress, improvements in neurophysiological stress markers (e.g., cortisol), increases in endorphins, and enhancement of immune factors is also reported. an average minutes exposure to a therapy dog reduces anxiety in % of fibromyalgia patients, together with reductions in pain and improvements in mood [ ]. patients with major joint replacement exposed to dog therapy required less pain medication than controls [ ]. the ed simultaneously represents an environment that has great need for the potential benefits of animal assisted therapy, but also presents unique challenges to its implementation. in one ed, % of all patients indicated desire to see a therapy dog [ ]. therapy dogs offer a novel and useful complementary therapy for children undergoing surgical procedures [ ]. aaa has the potential to benefit children with cancer because pediatric oncology patients often suffer from distress due to physical examinations, venipuncture, chemotherapy infusions, spinal taps, surgery, hospitalization, pain, fear of medical procedures, unpleasant physical symptoms, uncertainty, and worry about death [ ]. patients with brain tumors face serious and unique challenges with neurologic and neuropsychological problems that are specific to the location of the tumor and just not the systemic symptoms of the cancer [ , ]. pet therapy significantly increases patients’ overall feeling of wellbeing and reduces anxiety about future uncertainty [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : hospitalized kid on animal visit understanding whether aaa is safe and effective for pediatric cancer patients is critical, especially because of concern about infection in immunosuppressed persons. conducting aaa research in pediatric oncology requires understanding current regulations and variations in practice. knowledge of regulations helps us understand elements required for intervention protocols (e.g., hand- cleaning), whereas knowledge of practice variation can help us identify research opportunities (source: chubak j. therapy- dog visits for kids with cancer: a safe way to induce smiles? web kaiser permanente washington health research institute july , . positioning: simply assisting a patient to change position in the bed or chair or while ambulating can improve comfort. also, fitting body arrangement and backing of limits can improve quiet solace and viewpoint. keeping things inside reach additionally makes a patient increasingly agreeable. back pain is soothed by a few positions. the first is to put the head and trunk at ° to ° point. wedge cushions are utilized to achieve this. at that point place a couple of pads under the knees, in the event that it is an emergency clinic bed, this is done effectively without pads. moving the arms and legs while keeping the storage compartment still can exacerbate side effects. for instance, lifting a leg up while lying on the back would in general reason protests of back and leg pain. a few patients additionally had expanded back pain when lying face down and twisting the knee or handing the hip over or out. the patient can more often than not do it without anyone else's help utilizing the bed controls. weight decrease happened in the sacral area with the pad and wedge frameworks brought about expanded weights in the back sidelong areas of the hindquarters and thighs. when utilizing off-stacking gadgets, thought ought to be given to all components, including tissue interface weights on the sacrum, expanded weights on other body areas, and the probability that these expanded weights will result in tissue harm. the pain is more terrible while changing positions or when hacking or wheezing in low back pain. guaranteeing that the over-bed table, the phone, the attendant call catch, and the pca control catch are all inside a patient's achieve diminishes rehash requests from the patient, yet in addition diminishes tolerant anxiety. coming up next are purposes behind changing a patient's position:  to promote comfort and relaxation.  to promote good circulation.  to improve lung function.  to relieve pressure on skin and prevent skin breakdown (pressure sores)  to prevent loss of muscle tone  to prevent atrophy and contractures  to prevent edema (swelling) [ - ] page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue exhibit : differential diagnosis of low back pain [ ] mechanical low back pain nonmechanical spine disease visceral disease lumbar strain or sprain †  degenerative disease  disks (spondylosis)  facet joints ‡  diffuse idiopathic skeletal hyperostosis ‡ neoplasia  metastatic carcinoma  multiple myeloma  lymphoma and leukemia  spinal cord tumors  retroperitoneal tumors pelvic organs  prostatitis  endometriosis  chronic pelvic inflammatory disease renal disease  nephrolithiasis  pyelonephritis  perinephric abscess spondylolysis ‡ § spondylolisthesis ¶ infection  osteomyelitis  septic discitis  paraspinal or epidural abscess  endocarditis herniated disk spinal stenosis vascular disease  abdominal aortic aneurysm  aortoiliac disease osteoporosis with compression fracture fractures congenital disease  severe kyphosis  severe scoliosis inflammatory arthritis  ankylosing spondylitis  reiter's syndrome  psoriatic spondylitis  inflammatory bowel disease  polymyalgia rheumatica gastrointestinal disease  pancreatitis  cholecystitis  perforated bowel paget's disease †a variety of terms are used to refer to muscle or ligament strains or sprains of the low back including lumbago, facet joint syndrome, sacroiliac syndromes, segmental or somatic dysfunction, fibromyalgia, and myofascial syndrome. ‡the relationship between symptoms and objective findings for these conditions is not clearly established. §spondylolysis is a defect in the pars interarticularis without vertebral slippage. ¶spondylolisthesis is anterior displacement of one vertebra, typically l , over the one beneath it. hypnosis the vast majority of the trance intercessions for chronic pain incorporate guidelines in self- spellbinding. spellbinding intercessions reliably produce noteworthy reductions in pain related with an assortment of chronic-pain issues. likewise, entrancing was commonly observed to be more viable than no hypnotic mediations, for example, consideration, active recuperation, and training [ ]. therapeutic emplo yments of entrancing in dermatology incorporates diminishing distress from tingling or skin pain, adjusting instilled dysfunctional propensities, for example, scratching and so on [ ]. figure : use of hypnosis in the treatment of pain page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue there are three components in entrancing; retention, separation, and suggestibility. retention is submerging profoundly into observation, creative ability, or a dynamic ordeal. the individuals who tend to effortlessly encounter assimilation are more hypnotizable than individuals with no experience. separation is the isolating of the components of the psyche and conduct, for instance while reviewing a self-portraying memory, it is like the condition of imagining where the subject is both the onlooker, just as the principle character, at the same time. there could be a conduct in the condition of obviousness, or an affair of impression of the other body parts isolated to different pieces of the body. suggestibility is that the subject effectively complies with the advisor's bearings amid mesmerizing. be that as it may, this does not imply that the subject has totally lost his or her volition. rather, as the subject is immersed in a state of hypnosis, the subject's judgment is reserved for a short time (source: lee js, pyun yd. use of hypnosis in the treatment of pain. korean j pain. ; ( ): - ). the cerebrum regions that are initiated when pain is experienced are the thalamus, essential somatosensory cortex (si), auxiliary somatosensory cortex (sii), insula, forebrain (eg. prefrontal cortex), amygdale, and front cingulated cortex (acc) [ - ]. these cerebrum zones are known as the neuromatrix. acc is in charge of the feelings (initiated amid adoration, love and eminently feeling) [ , ]. amid mesmerizing, when a disagreeableness because of pain is recommended to increment or reduction, the obnoxiousness changed in agreement to the recommendations, and the acc action likewise changed as needs be [ , - ]. be that as it may, there were no adjustments in pain force and cerebrum movement including si and sii [ ]. the potential advantages of joining pain training (pe) with clinical spellbinding (ch) in the main preliminary appearing extra utilization of trance with pe results in improved results over pe alone in patients with chronic nonspecific low back pain [ ]. trance has been utilized in ophthalmic medical procedure for a long time, and a few instances of fruitful mesmerizing application have been accounted for. easing of pain, particularly for patients who experienced clear pain amid the main eye medical procedure additionally detailed [ ]. patients with serious chronic ailments and propelled malignant growth accepting palliative consideration, have a mind boggling scope of pain and anxiety that can emerge right off the bat over the span of disease. clinical entrancing can be viewed as a compelling adjuvant treatment for pain and anxiety control in malignancy just as in serious chronic ailments for patients accepting palliative consideration [ ]. figure : changes in different areas in brain after hypnosis page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue three general conclusions can be drawn from this body of work. first, hypnosis and hypnotic analgesia suggestions have been shown to affect virtually all of the neurophysiological processes that underlie the experience of pain, from those in the periphery to those in the spinothalamic tract and numerous cortical areas. second, the specific effects of hypnosis on brain activity depend on the wording of the hypnotic suggestions. last, although people can respond to suggestions for pain relief without a hypnotic induction, the efficacy of analgesia suggestions is enhanced when they are preceded by this step. this latter finding might be related to neurophysiological changes that occur with a hypnotic induction, which are thought to reduce overall monitoring and executive functioning activities (source: . jensen mp, day ma, miró j. neuromodulatory treatments for chronic pain: efficacy and mechanisms. nat rev neurol. mar; ( ): - . doi: . /nrneurol. . . epub feb . review. pubmed pmid: ; pubmed central pmcid: pmc ). exhibit : counseling points for the patient with neuropathic pain [ ]  a combination of treatment strategies is essential to achieve some degree of relief from chronic pain because the pain is the result of multiple causes.  understanding medications, dosing schedules, side effects. track of multiple medications may be required.  realizing that medications may not be fda-approved for treatment of neuropathic pain, and reference information may not be readily available.  cautions about using alternative or natural medicines to provide relief. these usually are not effective and can be expensive.  physical therapy, exercise, and psychological treatments are important to the treatment plan. keeping appointments and being patient with expectations.  setting reasonable goals for pain relief. pain most likely will not be able to be completely cured.  understanding neuropathic pain. being knowledgeable about condition gives an opportunity to have input into the treatment plan.  becoming proactive about health, and to achieve successes. electrical stimulation electrical stimulation can relieve some severe and otherwise persisting pains. at its best it can be associated with either a gradual reduction in the pain or an increased ability by the patient to control his suffering. it seems particularly appropriate for use in the field of benign persistent pain [ ]. it involves using a device to send a gentle electric current to nerves or muscles. this can help treat pain by interrupting or blocking the pain signals [ ]. these devices are generally safe. however, they involve sending electrical impulses though body. so, it’s important to talk with physicians if patient has a pacemaker, another implanted device, is pregnant, with epilepsy, or having a heart problem [ ]. it might have been prudent to separate these currents according to their primary uses in physiotherapy practice, rather than combining them together. tens and ifc are used primarily for pain relief; hvpc is used for wound care and sometimes for pain relief; and nmes is used for muscle-fiber recruitment. nmes can be used safely and effectively in patients with cancer, chronic obstructive pulmonary disease, and heart disease [ , ]. electrical stimulation often is used to augment physical therapy program after an injury or illness; it should not be the only treatment received when attending physical therapy [ ]. there are different es forms, including transcutaneous electrical nerve stimulation (tens), neuromuscular electrical stimulation (nmes), interferential current (ifc), pulsed electrical stimulation (pes), noninvasive interactive neurostimulation (nin), iontophoresis [ , ]. broader types include: transcutaneous electrical stimulation (tens); implanted electric nerve stimulation (eg. pns); deep brain or spinal cord stimulation [ ]. the recent advancements include improvement in ultrasound technologies, integration of ultrasound into clinical practice, percutaneous implantation techniques, smaller devices, and rechargeable and larger-capacity batteries [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : electric stimulation therapy electrical incitement treatment includes setting glue cushions with terminals on the patient's skin so as to coordinate a controlled electrical flow through the body. the anodes are set with the end goal that the electrical flow achieves the influenced territory of the body and causes a withdrawal of a focused on single muscle or gathering of muscles. while it might appear to be unnerving to send power through the body, it is really reproducing the electrical motivations that happen in the body amid typical development and exercise. most patients don't feel any pain while accepting the treatment. the created withdrawal makes an expansion in blood supply the focused on zone, which can result in improved muscle quality and expanded recuperating. contingent upon the seriousness of the condition, the electrical incitement can be expanded for an increasingly commanding constriction or diminished for a gentler withdrawal. an extra advantage of this treatment is that the nerves in the influenced territory are animated, which can square pain signals from the nerves to the cerebrum. this is why electric stimulation therapy is often used to help treat chronic conditions, but many acute conditions can be effectively treated as well. it is also thought that the electrical stimulation causes the body to produce endorphins, which naturally provide pain relief (source: web back & body medical. electric stimulation therapy) implantable peripheral nerve stimulation (pns) the peripheral nervous system includes pathways outside of the spinal cord, specifically various plexuses and peripheral nerves. peripherally implanted nerve stimulation entails the placement of electrodes on a selected peripheral nerve. the stimulating electrode array is connected to an implanted pulse generator [ ]. pns has been shown to be efficacious in several chronic pain conditions including trigeminal neuropathic pain, episodic cluster headache (supraorbital nerve stimulation), chronic migraine/headache disorders (occipital nerve stimulation), fibromyalgia (c area stimulation), postherpetic neuralgia, complex regional pain syndrome type i and type ii, isolated peripheral neuropathy, ilioinguinal, iliohypogastric, and lateral femoral cutaneous neuralgia, back pain, foot pain (tibial nerve stimulation), and coccydynia [ ]. post-stroke hsp is highly prevalent. of those who suffer from hsp, up to % report moderate to severe pain with a third refractory to available treatments [ , ]. data suggest that surface electrical stimulation (es) is efficacious for treating hsp. however, it is not well- tolerated and requires skilled personnel to maintain [ ]. the mechanism of pns- mediated pain relief may include improvement in biomechanics of the glenohumeral joint and reversal of central page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue sensitization. reduction in pain, reduction in pain interference, and improved pain- free external rotation rom without serious adverse events reported [ , ]. the use of ultrasound technology during implantation allows for percutaneous placement of the pns electrode [ ] and almost eliminates the need for skin incision and tissue dissection [ ]. currently, extra-neural electrodes have proven safe for chronic applications while invasiveness and long-term stability of intraneural electrode remain challenging for permanent implantation. safety limits of stimulation parameters are still predominantly described in terms of electric charge [ ]. compared to the conventional battery-powered system, winers (under research) can be used in closed-loop recording and stimulation experiments over extended periods without adding the burden of carrying batteries [ ]. however, the criteria for patient selection for conventional pns are:  clear-cut etiology and corrected pathology (eg. nerve entrapment syndrome)  only patients with intolerable pain despite exercise, medication and tens  pain consistent with the sensory distribution of a single peripheral nerve  a positive diagnostic peripheral nerve block  exclusion of nerve entrapment neuropathies  the patient is free of major psychological or psychiatric disease [ , ] contraindications for the use of pns mainly relate to surgical risk and include:  coagulopathy,  infection in the surgical site,  psychiatric illness,  a failed diagnostic trial,  requirement of periodic mris, such as for cancer patients, and  complete sensory loss [ ]. figure : peripheral nerve stimulation (pns) following a fruitful preliminary, a perpetual gadget, comprising of slender wires with electrical leads on their tips, is put through a needle under the skin. furthermore, a battery is put under the skin through a little entry point. everything is little enough to stay covered up under the skin. the framework can be turned on or off by the patient utilizing a remote control. notwithstanding nerve wounds, a fringe nerve trigger embed is frequently used to treat conditions, for example, crps (complex provincial pain disorder) and lower back pain. (source: web national spine & pain centers. peripheral nerve stimulation (pns) page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue interrupts pain signals of damaged nerves). neuromuscular electrical stimulation (nmes) in sports, nmes has been utilized for muscle fortifying, support of bulk and quality amid delayed times of immobilization, specific muscle retraining, and the control of edema. a wide assortment of triggers, including the burst- adjusted substituting current ('russian trigger'), twin-spiked monophasic beat current and biphasic beat current triggers, have been utilized to deliver these impacts [ ]. it is often used to “re-train” or “re- educate” a muscle to function and to build strength after a surgery or period of disuse [ ]. during short-term disuse, nmes represents an effective interventional strategy to prevent the loss of muscle mass by increasing muscle protein synthesis rates [ ]. programs of nmes appear to be acceptable to patients and have led to improvements in muscle function, exercise capacity, and quality of life after cardiovascular surgery [ , ]. nmes can be safely implemented even in patients immediately after cardiovascular surgery and it helps to regain muscle strength only when applied for a sufficient number of days [ , ]. it is safe for critically ill patients; however, it should be applied by duly trained professionals and with proper evidence-based parameters. recent studies with variable methodological designs have shown that nmes is safe, feasible and beneficial for patients admitted to the icu but available data are still inconclusive due to the heterogeneity of protocols and the small sample sizes [ ]. a packaged intervention of tmt plus nmes may be a means of addressing not only lbp, but also impaired physical function and resultant disability, but studies among older adults have been limited [ ]. prevalence of postpartum lbp (pplbp) has been reported to be % in the first month after the delivery, it is still the most prevalent painful condition, and is considered as a serious problem by one- third of pregnant women. limited data of using nmes for treating patients with pplbp are available and it is ineffective to patients with pplbp [ ]. it might not benefit for patients with wrist dysfunction after ais after -week treatment [ ]. although clinical meaning reported improvement is difficult to interpret, a % improvement in swallowing performance following treatment reported in an older study in use of nmes in the rehabilitation of swallowing disorders [ ]. it is effective in female chinese patients with eap after -week treatment. further studies are still needed to warrant this result [ ]. cur is a very tricky disorder, involving inability to voluntarily urinate for patients with tbi. nmes could not relieve symptoms of chinese patients with cur after tbi, as well as improve their quality of life after weeks of treatment [ ]. nmes is a valuable adjunct in patients with dysphagia and in patients with vocal fold paresis [ ]. combined nmes/tens may be a valuable adjunct in the management of chronic back pain. further research investigating the effectiveness of both nmes and combined nmes/tens seems warranted [ ]. no study found using nmes for the management in patients with npp after sci [ ]. the efficacy of nmes being distinctly superior to that of tens in maintaining long-term analgesia in hsp. however, nmes was not more efficacious than the tens in improving the shoulder joint mobility, upper limb function, spasticity, the ability of daily life activity, and stroke-specific quality of life in hsp patients [ ]. a recent trial found insufficient and inconclusive evidence from rcts to inform on the role of nmes for treating people with pfp in current clinical practice [ ]. nmes training appears to offset the changes in quadriceps structure and function, as well as improve the health status in patients with knee oa [ , ]. nmes was not found effective for patients with clbp after -week treatment [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : repeated muscle contraction by nmes suggested advantageous effects of neuromuscular electrical stimulation (nmes) with regard to muscle hypertrophy, atrophy, aerobic capacity, membrane excitability, and membrane translocation of glut . nmes may preserve membrane excitability. membrane translocation of glut is regulated by igf‐ , ampk, pgc‐ α, and its downstream targets, which may all be affected by nmes. atrophy gene expression (murf‐ , atrogin‐ ) increases upon dephosphorylating of foxo transcription factors, which is inhibited by downstream insulin signaling (source: yuki iida and kunihiro sakuma. chapter . skeletal muscle dysfunction in critical illness. in: physical disabilities - therapeutic implications http://dx.doi.org/ . /intechopen. ) transcutaneous electrical nerve stimulation (tens) tens, is a methodology that utilizes electric flow to enact nerves for remedial reasons. the tens unit is a little gadget, frequently battery-worked, which can here and there even fit into a pocket. it uses cathodes set on the skin and which associate with the unit by means of wires to address a focused on remedial objective. the units are said to be titratable, allowing for a high level of client resistance with few symptoms. contrasted with numerous prescriptions, the gadget is free from the danger of overdose. tens units are frequently very customizable, enabling the client to control beat width, force, and recurrence. low recurrence of < hz related to high force is utilized to create muscle withdrawals. high frequencies of > hz are used with low intensity to produce paresthesia without muscle contractions [ ], [ - ]. iasp works on two types of tens: high frequency tens [ - hz, pulse per second (pps)], with low intensity (paresthesia, non-painful), pulse duration ( - μs); and low frequency tens (< pps), with high intensity (to tolerance threshold), pulse duration ( - μs). what makes tens worthwhile is that this technique, while substantially relieving acute and chronic pain, is noninvasive, inexpensive, safe and easy to use [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue exhibit : exclusion criteria/contraindications for the use of a tens unit [ ]  tens unit cannot be placed over the eyes.  tens unit electrodes cannot be placed on opposite sides of the head that would result in a trans-cerebral current.  tens unit electrodes cannot be placed on the chest and back that would result in a transthoracic current.  tens units cannot be placed on the anterior neck due to the possibility of a vasovagal event or laryngospasm.  tens units cannot be placed internally.  tens unit electrodes cannot be placed directly over the spinal column.  tens unit electrodes should not be placed near any sort of implantable device (spinal stimulator, pacemaker, etc.) where current from the tens would interfere with the device.  for pacemakers or pacemaker/defibrillators, a tens unit must be placed at least six inches away from the pacemaker and during initial tens unit placement, the patient should be on a cardiac monitor to watch for any interference.  tens units should not be used over the uterus in pregnant women. tens units appeared to be effective in ed for reducing pain [ ]. tens is useful and safe adjuvant in spinal cord injury patients for the management of neuropathic pain [ ]. there is strong evidence that tens as an adjunct is effective in reducing lower limb spasticity when applied for more than minutes over nerve or muscle belly in chronic stroke survivors [ ]. repeated applications of tens as an adjunct therapy for improving walking capacity and reducing spasticity in the same population [ ]. after -week treatment, patients with as did not show more promising outcomes in pain reduction [ ]. tens and ifc have similar global effects on acute/chronic pain and positive effects on function in both womac and rmdq questionnaires [ ]. tens is effective in reducing pain and improving patients’ qol in cases of ico. tens is an easy-to-use, effective, noninvasive, and simple method for ico-associated pain control and qol improvement [ ]. it has the potential to be a valuable therapeutic tool for women fsd in women without bladder problems [ ]. it has been used for more than years. however, despite all these advantages, there has been very little research into the therapeutic effects of tens on brain activity [ ]. gamma band is a kind of brain wave which consists of very rapid oscillations (> hz) [ ]. moreover, it has been found that gamma band has an important role in pain perception as well as pain processing [ - ]. high frequency tens could reduce the enhanced gamma band activity after inducing tonic pain in healthy volunteers [ ]. the effect of local and spinal tens combined with the swc for pi produced a significant improvement in size, healing, skin temperature, and pain levels in older adults with chronic pis and cognitive impairment [ ]. treatment with tens is effective for reducing pain in people with fibromyalgia. in addition, the inclusion of tens in therapeutic exercise programs seems to have a greater effect than practicing therapeutic exercise in isolation [ ]. tens may serve as an effective and well-tolerated alternative for migraineurs. however, low quality of evidence demands further research [ ]. tens was not superior to fentanyl for pain relief in laparoscopic surgery with patients who underwent gynecologic laparoscopy under spinal anesthesia [ ]. it can provide additional reduction in chronic post-stroke spasticity, mainly as additional therapy to physical interventions. studies with better methodological quality and larger sample are needed to increase evidence power [ ]. tens was effective in reducing pain intensity during carboxytherapy in patients with cellulite in the gluteal region [ ]. fs-tens is an effective option for treating multisite chronic pain in a real-world setting. the most significant impact was a clinically meaningful reduction in pain interference page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue with activity and mood. there were also statistically significant reductions in pain intensit y and pain interference with sleep. pain intensity and pain interference with activity and mood exhibited a dose–response association [ ]. tens may be effective for long- distance walking in patients with pre- radiographic knee osteoarthritis [ ]. figure : postulated mechanisms of action for tens-induced analgesia tens activates a complex neuronal network to result in a reduction in pain. tens reduces hyperalgesia through both peripheral and central mechanisms which may involve: ( ) neurotransmitters & receptors that mediate tens analgesia: hf tens produces analgesia by activating endogenous inhibitory mechanisms in the central nervous system involving opioid gaba, and muscarinic receptors. ( ) reduction in central excitability: hf tens also reduces central neuron sensitization and release of the excitatory neurotransmitters glutamate and substance p in the spinal cord dorsal horn in animals with inflammation. ( ) peripheral mechanisms: some of the analgesic effects of tens are mediated through peripheral adrenergic receptors (source: vance cg, dailey dl, rakel ba, sluka ka. using tens for pain control: the state of the evidence. pain manag. ; ( ): - ). exhibit general features of tens [ - ]  it is a non-invasive, inexpensive, self-administered technique to relieve pain.  there are few side effects and no potential for overdose so patients can titrate the treatment as required.  tens techniques include conventional tens, acupuncture-like tens and intense tens. in general, conventional tens is used in the first instance.  the purpose of conventional tens is to selectively activate large diameter non-noxious afferents (a-beta) to reduce nociceptor cell activity and sensitization at a segmental level in the central nervous system.  pain relief with conventional tens is rapid in onset and offset and is maximal when the patient experiences a strong but non-painful paraesthesia beneath the electrodes. therefore, patients may need to administer tens throughout the day.  clinical experience suggests that tens may be beneficial as an adjunct to pharmacotherapy for acute pain although systematic reviews are conflicting. clinical experience and systematic reviews suggest that tens is beneficial for chronic pain. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue spinal manipulation primary therapy (chiropractic care) chiropractors use hands-on spinal control and other elective medicines, the hypothesis being that legitimate arrangement of the body's musculoskeletal structure, especially the spine, will empower the body to mend itself without medical procedure or drug [ - ]. while the pillar of chiropractic is spinal control, chiropractic care may likewise incorporate different medicines, including manual or manipulative treatments, postural and practice instruction, and ergonomic preparing (how to walk, sit, and remain to confine back strain). chiropractors today often work in conjunction with primary care doctors, pain experts, and surgeons to treat patients with pain [ - ]. chiropractors use broad categories of therapeutic interventions: (a) joint manipulation and mobilization, (b) soft tissue manipulation and massage, (c) exercise and physical rehabilitation prescription, and (d) home care and activity modification advice. in addition, nutritional and dietary counseling, physical therapy modalities (eg, heat, ice, ultrasound, electro- modalities), and taping/bracing are also used as adjunct procedures [ ]. survey by swedish agency for health technology assessment and assessment of social services, sbu shows % of the physiotherapists stated that they frequently used ‘circulation training’ as compared to % of chiropractors and % of the physiotherapists regularly used spinal manipulation whereas the corresponding figure for chiropractors was % [ ]. chiropractors are frequent providers of care for patients with lower back pain. practitioner attitudes and beliefs have been shown to be associated with clinical outcomes for patients with low back pain [ ]. numerous people with lbp have never been to a chiropractor and may not be available to attempting it out of the blue for an assortment of reasons, including adverse open observations about chiropractic. many have likely found out about the likelihood that chiropractic care may cause genuine damages, including vertebral course analyzation (vad) prompting stroke, loss of motion, or demise. notwithstanding, few are likely mindful that vad itself may result in neck pain, provoking people to look for consideration, regardless of whether from chiropractors, pcps, or different suppliers [ ]. spinal manipulation confers some advantage in back pain with no unfavorable occasions [ ]. for young people with chronic lbp, spinal control joined with exercise was more powerful than exercise alone over a -year time frame, with the biggest contrasts happening at a half year. these findings warrant replication and evaluation of cost effectiveness [ ]. chiropractic was superior to sham chiropractic and physiotherapy treatments, but it was less effective than pharmaceutical treatment and other therapies [ ]. smt could not lead to significantly different outcomes (clinical and biomechanical) in participants with ctp than a control condition only including the evaluation of spinal stiffness [ ]. chiropractic was one of the leading alternatives to standard medical treatment in cancer pain management [ , ]. the effectiveness of chiropractic was equivalent to these conventional treatments in the management of neck pain [ ]. chiropractic demonstrated no significant difference with any other treatment mode in fibromyalgia [ ]. ctth is common, contributing to significant loss of work and high socioeconomic costs. chiropractors have capacit y to offer an additive approach to patient care in fht setting within collaborative care models [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : communication flow among patients, pcps, cam providers this outlines the unpredictable stream of correspondences among patients with chronic musculoskeletal pain, essential consideration suppliers (pcps), and integral and elective prescription (cam) suppliers inside and outside of an oversaw consideration framework. the cam suppliers are acupuncturists and chiropractors. in spite of the fact that advancement is being made, poor joining of consideration remains a test over the us social insurance framework. as more safety net providers offer elective treatment benefits and as more doctors bolster the utilization of cam medicines for pain the board, extra potential coordination challenges emerge. patients, pcps, and a/c suppliers want more correspondence; in this way frameworks should be made to encourage progressively open correspondence which could emphatically profit persistent results. collaborative care provides patients with therapeutic options within an environment where health care providers and patients are informed (penney ls, ritenbaugh c, elder c, schneider j, deyo ra, debar ll. primary care physicians, acupuncture and chiropractic clinicians, and chronic pain patients: a qualitative analysis of communication and care coordination patterns. bmc complement altern med. ; : . published jan . doi: . /s - - - ). acupuncture acupuncture is a customary chinese routine with regards to medication that has picked up prevalence in western culture and around the globe. it includes the inclusion of slender needles into the skin to animate nerves, muscles, and connective tissues all through the body with the objective of mitigating pain, strain, and stress. all the more extensively, needle therapy is really a group of various methodology. there are related dangers; be that as it may, genuine reactions are uncommon [ ]. the standard acupuncture nomenclature distributed by the who recorded around needle therapy focuses and meridians associating a large portion of the focuses [ ]. needle therapy treatment and page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue control aggregate mediations in parallel- bunch randomized preliminaries of needle therapy are not in every case definitely announced. while trying to improve guidelines, a global gathering of experienced acupuncturists and scientists conceived a lot of suggestions, assigning them stricta. the planned result is that mediations in controlled preliminaries of needle therapy will be all the more enough detailed, consequently encouraging an improvement in basic examination, investigation and replication of preliminaries [ ]. although acupuncture is widely used to manage chronic pain, it remains highly controversial, largely due to the lack of a clear mechanism [ ]. american college of physicians’ guidelines recommend acupuncture as one of several options, such as manual therapy or exercise, for patients with back pain [ ]. uk nice guidelines recommend acupuncture for chronic headache or migraine [ ]. the adverse effects of acupuncture are short-lasting and mild, such as tiredness and drowsiness, making acupuncture potentially a safer choice of treatment for improving qol of chronic paws patients [ ]. there have been recommendations against using acupuncture for osteoarthritis in several guidelines including those from nice [ ] and the american academy of orthopedic surgeons (aaos) [ ]. compared with conventional drug therapy acupuncture alone did not show superior effects on pain relief. but along with drug therapy, resulted in increased remission rate of pain, shorter onset time of pain relief, longer duration of analgesia time, and better quality of life without serious adverse effects, as compared with drug therapy alone [ ]. acupuncture is effective for the treatment of chronic pain and is therefore a reasonable referral option [ ]. differences between true and sham acupuncture are smaller than those between true acupuncture and no acupuncture control [ , ]. no current guidelines recommend acupuncture for neck or shoulder pain [ ]. acupuncture is effective for the treatment of chronic musculoskeletal, headache, and osteoarthritis pain [ ]. no systematic review has evaluated the effectiveness of acupuncture for combined neck pain, back pain, and lower back pain [ ]. it is a safe and well-tolerated treatment option, improving a broader proportion of patients than current pharmaceutical options for women with fibromyalgia [ ], however, for pain relief and reducing the number of tender points, acupuncture proved superior to drugs [ ]. acupuncture may depress pain by activating a number of neurotransmitters or modulators such as opioid peptides, norephinephrine, serotonin, and adenosine. acupuncture may also activate the endogenous pain inhibitory pathway. certain modes of acupuncture improved postoperative pain on the first day after surgery and reduced opioid use [ , ]. exhibit : conditions that may be amenable to acupuncture identified by the who [ ] upper respiratory tract disorders acute sinusitis; acute rhinitis; acute tonsillitis gastrointestinal disorders acute/chronic gastritis; chronic duodenal ulcer (pain); chronic colitis; pelvic pain neurological disorders headache; migraine; trigeminal neuralgia; post-herpetic neuralgia; peripheral neuropathies; intercostal neuralgia musculo-skeletal disorders tennis elbow; frozen shoulder; cervico-brachial syndrome; sciatica; low back pain; osteoarthritis; phantom limb pain; fibromyalgia other dysmenorrhea; atypical chest pain; labor pain/stimulation of labor; dental pain page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : a mechanism of action of acupuncture in treating chronic pain the accurate instrument of how needle therapy diminishes hr in the meridian directs requires further examination so as to be replied. two components are engaged with the change. one is the pathway identified with the vein framework. at the point when a needle is embedded into an acupoint, the nerve terminal which typically comprises of aδ or c filaments is energized and sends a neural heartbeat flag to the focal nerve framework. at that point, an axon reflex creates which prompts the arrival of substance p (sp) and different synthetic concoctions into the interstitial liquid around the needle. sp and different signs diffuse and relocate to pole cells adjacent through interstitial stream along meridian channels. pole cells then degranulate and discharge histamine which will keep on moving along meridian channels. sp and histamine can make encompassing veins grow and turn out to be increasingly penetrable enabling progressively interstitial liquid to stream outside the vessel. this quickens the stream along meridian channels and decreases the pressure driven obstruction along the channels. the lower resistance further facilitates the interstitial flow which can eliminate algogenic substances to relieve pain (source: zhang wb, xu yh, tian yy, et al. induction of hyperalgesia in pigs through blocking low hydraulic resistance channels and reduction of the resistance through acupuncture: a mechanism of action of acupuncture. evid based complement alternat med. ; : ). physiotherapy early physical therapy appears to be associated with subsequent reductions in longer-term opioid use and lower-intensity page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue opioid use for all of the musculoskeletal pain regions examined [ ]. physical therapy or physiotherapy is a branch of rehabilitative medicine aimed at helping patients maintain, recover or improve their physical abilities. pts practice in many settings, such as private-owned physical therapy clinics, outpatient clinics or offices, health and wellness clinics, rehabilitation hospitals facilities, skilled nursing facilities, extended care facilities, private homes, education and research centers, schools, hospices, industrial and this workplaces or other occupational environments, fitness centers and sports training facilities [ ]. both ot) and pt services are provided to clients/patients of all age groups, infants through older adults, from a variety of socioeconomic, cultural, and ethnic backgrounds, who possess or who are at risk for impairments, activity limitations, or participation restrictions. both professions recognize that health and well-being are supported when individuals are able to engage in activities that promote quality of life through a healthy lifestyle [ ]. the focus of physical therapist is differential evaluation and the treatment of dysfunction rather than differential diagnosis and treatment of disease as in the case of physician [ ]. globally, physical therapy professional organizations have called for physical therapists to perform lifestyle behavior management during customary care, or health-focused care, due to increasing morbidity and mortality related to no communicable diseases. given the potential for health-focused care to improve health outcomes, physical therapists should integrate health promotion into their daily clinical practice [ ]. physical therapists follow the guide to physical therapist practice, apta, and state-directed practice laws in their quest to provide best care for patients. physical therapists are also team members in a delivery model for patients with rheumatic diseases and musculoskeletal conditions. other team members may include rheumatologists, orthopedic surgeons, nurses, occupational therapists, social workers, pharmacists, and psychologists just to name a few [ ]. figure : a comprehensive approach to manual physical therapy effectiveness accounting for interactions between patient, therapist, and intervention factors. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue examples of factors include preferences, expectations, outcome assessment, and shared decision-making (sdm). additionally, this view acknowledges the interaction between patient and manual physical therapist, which may yield important outcome contributions, either directly (i.e. intervention selection) or indirectly (i.e. modified expectations or mood). finally, this approach acknowledges the integration of targeted adjunct interventions such as psychosocial strategies and exercise that may ( ) enhance the effectiveness of manual therapy for reducing the impact of pain, and/or ( ) promote and maintain positive behavioral change (source: coronado ra, bialosky je. manual physical therapy for chronic pain: the complex whole is greater than the sum of its parts. j man manip ther. ; ( ): - ). intervention such as mirror visual feedback with a d augmented reality system may augment manual therapy approaches by desensitizing the person and allowing a window for inclusion of complimentary treatment strategies [ ]. pt intervention appears to be an effective, cost-effective, non-pharmacological method to decrease chronic pain in plhiv [ ]. pt should strongly be considered for the management of chronic pain to gradually increase flexibility and strength, for example in knee osteoarthritis where there is demonstrated benefit [ ]. risks of pt include myocardial infarction leading to sudden death, as well as worsening pain (especially at beginning of treatment) [ ]. patients with poor experience from physical therapy ignored the prescription since they could not see the difference between pap and physiotherapy [ ]. survivors of major burn injury are subjected to painful physical therapy and occupational therapy that are essential for successful treatment and rehabilitation of their burns. the magnitude of the analgesic effect is clinically meaningful and is maintained with repeated use [ ]. pt for primary idiopathic frozen shoulder can be useful for prescribing home exercises to increase shoulder mobility. many physical therapies and home exercises can be used as a first-line treatment for adhesive capsulitis. pt has been shown to bring about pain relief and return of functional motion in patients with frozen shoulder [ ]. an interdisciplinary management involving human embryonic stem cell (hesc) therapy along with physiotherapy as a supportive therapy offers regenerative treatment of the patients with sci [ ]. poor adherence to physiotherapy can negatively affect outcomes and healthcare cost [ ]. taylor et al. showed the ability of the physical therapist to manage effectively and safely simple peripheral musculoskeletal injuries in the emergency department significantly reducing the length of stay, waiting and treatment time of patients [ ]. an individual pt and rehabilitation program may augment improvements in patient-reported outcomes following arthroscopy for fai syndrome, reported by fair trial [ ]. patients with moderate knee oa with different grades of pain can benefit from a physiotherapy rehabilitation program, which was shown to be highly effective in patients with moderate pain, although this effect might be reduced in patients with severe pain [ ]. upper limb rehabilitation technology (armeo spring as training tool) could hold promise for complementing traditional ms therapy. significant gains were found in functional capacity tests. after training completion, tempa scores improved [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : the armeo system is for arm and hand therapy (physiotherapy) an exoskeleton supports the movements, while for motivation different videogames can be played. the modular "armeo" system was specifically designed for patients, whose hand and arm function has been affected due to a neurological disorder. the robotic system includes an arm exoskeleton and software that not only provides treatment plans and documentation options but also a variety of different games. for example, patients are asked to collect coins in an underwater setting or grab specific products in a supermarket. depending on the exercise, this trains range of motion and coordination, strength or stamina. patients continuously and immediately receive performance feedback. treatment progress is being recorded and measured at the same time, allowing for better assessment of the course of treatment thanks to this data. in doing so, patients always perform the appropriate and individually adapted training. (source: wart o. exoskeletons, serious games and co.: new technologies in rehabilitation. medica magazine / / ) yoga the word “yoga” literally means “yoking”, or “joining together” for a harmonious relationship between body, mind and emotions to unite individual human spirit with divine spirit or the true self [ ]. yoga is a vast system of practices and philosophy that originate in india. yoga can be helpful in pain management with both physical and mental benefits, but yoga is not a quick fix solution. yoga has many of the same benefits as mindfulness practice, due to the common focus on breath, body and present moment awareness [ ]. yoga is very helpful in treating some of the mechanical aspects of pain, for example when there are tight muscles which contribute to pain. however, practiced incorrectly or without proper supervision yoga can also exacerbate your pain in the short term, despite the fact that research shows yoga is as safe as usual care and exercise [ , ]. despite a number of reports and reviews supporting efficacy of yoga in health care, the awareness and integration of yoga in conventional healthcare remain limited [ ]. page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue figure : yoga for pain relief yoga can help people with arthritis, fibromyalgia, migraine, low back pain, and many other types of chronic pain conditions. a study published in annals of internal medicine found that among people with chronic low back pain, a weekly yoga class increased mobility more than standard medical care for the condition. another study published at nearly the same time found that yoga was comparable to standard exercise therapy in relieving chronic low back pain. a meta- analysis of studies that included more than , participants concluded that yoga can improve daily function among people with fibromyalgia osteoporosis- related curvature of the spine. practicing yoga also improved mood and psychosocial well-being (yoga for pain relief. web harvard health publishing, april, ) recent controlled studies of yoga for managing pain have been based on hatha or iyengar yoga. studies that have used hatha yoga have concentrated on relaxation techniques and gentle postures tailored to specific patient populations [ ]. integrating ancient wisdom of yoga and spirituality in the conventional palliative care setting appears to be a promising, cost-effective, and time- honored holistic approach offering a comprehensive wellness plan for patients [ ]. meditation and pranayama, along with relaxing asanas, can help individuals deal with the emotional aspects of chronic pain, reduce anxiety and depression effectively and improve the quality of life perceived [ ]. there is a need for additional high-quality research to improve confidence in estimates of effect, to evaluate long-term outcomes, and to provide additional information on comparisons between yoga and other exercise for chronic non-specific low back pain [ ]. both yoga therapy and conventional exercise therapy, with months follow up resulted in significant benefits in clbp, with the yoga intervention having the greater impact [ ]. beneficial effects of yoga could be associated with elevated serum bdnf levels and maintained serotonin levels. lee et al. investigated the effect of yoga on pain, bdnf, and serotonin in premenopausal women with chronic low back pain. the yoga group had decreased pain, increased bdnf and unchanged serotonin [ ]. yoga is an acceptable and safe intervention, which may result in clinically relevant improvements in pain and functional outcomes associated with a range of mscs [ ]. yoga intervention may reduce pain and catastrophizing, increase acceptance and mindfulness, and alter total cortisol levels in women with fm [ ]. an -week yoga of awareness intervention may be effective for improving symptoms, functional deficits, and coping abilities in fm [ ]. yoga of awareness” (yoa) is a mind/body program that, along with physical exercises, includes mindful meditation and page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue other coping tools drawn from the yoga tradition. thus, it provides fm patients with both exercise and coping skills components of no pharmacological therapy [ ]. headache frequency and intensity were reduced more in yoga with conventional care than the conventional care group alone. furthermore, yoga therapy enhanced the vagal tone and decreased the sympathetic drive, hence improving the cardiac autonomic balance [ ]. in a randomized controlled trial migraine without aura patients were randomly assigned yoga therapy or self- care. a significant reduction in migraine frequency was reported in the yoga versus self-care group [ ]. weeks of hata yoga exercises on women with knee osteoarthritis found to be effective and it could be used as a conservative treatment besides usual treatments and medications to improve the condition of people with osteoarthritis [ ]. approximately . % of males and . % of females suffer from oa. over % of adults between and years are affected with knee oa worldwide. handgrip strength is positively related to normal bone mineral density in postmenopausal women, and can be used as a screening tool for women at risk of osteoporosis [ ]. in a yoga group received iayt intervention for week at yoga center, right and left handgrip strength showed improvement after week iayt intervention [ ]. the practice of yoga effects on knee oa reported positive outcomes on symptoms including pain, flexibility, functional disability, anxiety, and quality of life [ ]. iayt practice showed an improvement in tug, sts, hgs, and goniometer test, which suggest improved muscular strength, flexibility, and functional mobility [ ]. regular yoga training is helpful in reducing knee arthritic symptoms, promoting physical function, and general wellbeing in arthritic patients [ ]. yoga has been used clinically as a therapeutic intervention for improving strength, posture, balance, and flexibility in older adults [ ]. neuroinflammation is a complex process involving both the peripheral circulation and the cns and is considered to underlie many cns disorders including depression, anxiety, schizophrenia, and pain. regular practice of yoga reduces inflammatory cytokines in general and might protect the individual from inflammatory diseases (significantly reduce levels of tnf-α and il- ). this study is particularly important because it examined how yoga influences the body’s response to a stressor, in this case exercise, and found that it effectively dampened the pro-inflammatory response [ ]. raj-yoga meditation and pranayama in combination with conventional, noninvasive, treatment modalities showed promising results in mpds patients as compared to either modalities alone [ ]. in a cohort of women with chronic pelvic pain, an -week yoga intervention resulted in improvement in pain and quality of life scores compared to the control group that was treated with non-steroidal anti- inflammatory drugs [ ]. despite a wide range of methodological gaps and limitations, yoga interventions were shown to be beneficial and yielded positive results without any adverse outcomes. it is also recommended that cancer caregivers are trained and certified as the “yoga therapists” who have knowledge of the particular disease and understand the needs of the patients [ ]. the assortment of advantages inferred, the nonappearance of reactions, and the money saving advantage proportion of restorative yoga make it an intriguing option for family doctors to recommend to their patients with malignancy [ ]. malignancy patients in customary treatment more often than not get at least one of radiotherapy, chemotherapy, careful intercession and hormone treatment. the patients utilizing yoga as a correlative treatment in grown- up malignant growth announced positive advantages regarding physical, psychological and social prosperity. the most ordinarily revealed direct advantage of yoga was its breath-related attention to page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue mind and body. patients detailed partiality for yoga as a corresponding treatment, however felt at least one worries of transportation, planning, absence of time and cost were noteworthy obstructions to yoga adherence [ ]. yoga uses the model of five-dimensional perceptions. the human being is considered to experience every interaction through the physical, vital, emotional, intellectual and spiritual perceptions simultaneously, with the physical sheath being the grossest and others progressively subtler; and the intellectual and spiritual perceptions being the subtlest. it also states that the ripples in the emotional sheath affect the grosser dimensions of vital energy flow and physical body [ ]. figure : systems network model of yoga for optimizing self-regulation the real appendages of yoga are spoken to in blue boxes as a range of abilities of four procedure instruments: morals, reflection, breath guideline, and stances. utilization of these abilities (appendages of yoga) crosswise over intellectual, emotional, social, and autonomic spaces with regards to physical and emotional stress is proposed to sum up to comparative difficulties off the yoga tangle and in regular daily existence. together, these apparatuses of yoga improve the productivity, bidirectional criticism, and reconciliation (+ dark lines) among high- and low-level mind systems, and afferent and re-afferent contribution from interoceptive procedures (e.g., multi- tactile, proprioceptive, vestibular, cardiovascular, pneumonic, musculoskeletal) with regards to stress. through an accentuation on interoception and base up info, reconciliation encourages hindrance (red lines) of maladaptive types of subjective, emotional, and conduct yield just as autonomic yield related with stress. proficiency improves the correspondence and adaptability among cerebrum and real frameworks to advise social yield. yoga's four apparatuses are depicted to include page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue specific administrative procedures related with each arrangement of mind systems (demonstrated in yellow boxes). with dominance of training, administrative procedures turn out to be more automatized, requiring less exertion to start when important and end all the more quickly when never again required. a focal official system underpins top-down instruments of attentional control and working memory permitting observing for appropriate objective coordinated conduct pursued without anyone else's input remedy if necessary. a fpcn bolsters official observing, meta-mindfulness, reappraisal, and reaction hindrance instruments. an ethical comprehension organize underpins inspiration and goal setting related with self-care and prosocial conduct. the dorsal consideration arrange bolsters attentional situating, and commitment. hypothlamic– pituitary– adrenal (hpa) pivot correspondence with brainstem vagal efferents bolster parasympathetic control and homeostasis crosswise over frameworks. a striatopallidal– thalamocortical system is in charge of encouraging termination learning and reconsolidation of maladaptive propensities into conduct that is lined up with aims and results into versatile propensities. specked lines speak to new, versatile pathways for reacting to stress. a concentration toward base up procedures encourages a move toward perceptual deduction instead of dynamic induction, and improves forecast and blunder revision forms, in this manner supporting ideal self-guideline (source: gard t, noggle jj, park cl, vago dr, wilson a. potential self-regulatory mechanisms of yoga for psychological health. front hum neurosci. ; : . published sep . doi: . /fnhum. . ). conclusion pain is intricate, so is their measures. there are numerous treatment alternatives - meds, treatments, and mind-body systems. intense pain can last a minute; once in a while does it wind up chronic pain. chronic pain perseveres for extensive stretches. usually impervious to most therapeutic medicines and cause extreme issues. once more, present day restorative framework recommends cam and pharmacotherapy together, rather than long haul utilization of pain executioners alone. way of life adjustment is another imperative thing to improve circumstance and continue the advantages of treatment. pain might be situated in one piece of the body or it might be across the board. studies propose that an individual's viewpoint and the manner in which they adapt emotionally to long haul (chronic) pain can impact their personal satisfaction. the event of pain ascends as individuals get more established, and ladies are bound to encounter pain than men. the helpless populace ought to be stayed in contact with doctors for pain the board and know about go betweens that may grant a further intensifying circumstance. active recuperation centers around activities and stretches that assistance make the body more grounded and progressively ready to capacity and move. when the issue has been recognized, an active recuperation session could incorporate fortifying activities, low effect vigorous exercise, and pain alleviation extends. our brains can influence how we see and experience pain. stress and anxiety can even exacerbate chronic pain. along these lines, body-mind treatments are valuable for helping patients better adapt to the pain and stress. body-mind treatment works by showing patients how to deal with their feelings, musings, stress, and the body's physical reactions. there is abundant proof that stress and anxiety push the dimension of chronic pain. serotonin and dopamine are two key synapses that influence our state of mind. lopsided dimensions of these two synapses are connected to anxiety and depression issue. stimulating living, grinning, watching motion pictures, delight trips, tattling, playing vdo page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue diversions keeps us occupied and diminish stress related rot. with regards to overseeing pain, buddha's outstanding words composed numerous hundreds of years back as yet seem to be valid: how you consider your pain can change how you feel it, regardless. neuroscientific thinks about have demonstrated that our minds physically change when we experience positive or negative feelings. this assumes a critical job in how well we oversee pain, particularly on an everyday premise. the brain and body are in consistent correspondence, so the manner in which we see our pain can change the manner in which we feel it. this is the reason moving our points of view about our pain is so critical—it's a viable method to control our manifestations, no medications required. acknowledgement it’s a great gratitude and honor to be a part of healthcare research and education. i am thankful to prof. arinze nkemdirim okere, associate professor of pharmacy, florida a&m university, for his precious time to review my submission and providing his inputs to expand the thought. i am also grateful to seminar library of faculty of pharmacy, university of dhaka for providing books, newsletters and journals. the greatest help was from my students who paid interest in my topic as class lecture and encouraged to write it. despite a great scarcity of funding this purpose from any authority, the experience was good enough to carry on research. summary the vast majority are eager to do pretty much anything to get away from the grasps of interminable agony. one of the primary cures offered to endless torment sufferers is prescription medications. prescription painkillers are compelling much of the time. be that as it may, the relief from discomfort they offer includes some major disadvantages for some. painkillers risk getting to be addictive. what's more, as endless news reports have appeared, the consequences of dependence on painkillers can be wrecking. non- tranquilize therapies decline torment and can be utilized notwithstanding pharmaceuticals or in lieu of pharmaceuticals. they offer the likelihood to enhance your personal satisfaction. similarly, as with some other treatment, every individual will react distinctively to various therapies, and there is no certification that any treatment will give total help with discomfort. though many evidences were weaker, the researchers also found that massage therapy, spinal manipulation, and osteopathic manipulation may provide some help for back pain, fibromyalgia, osteoarthritis, cancer pain, knee replacement, migraine, frozen shoulder and chronic non-migraine headache. these data can equip providers and patients with the information they need to have informed conversations regarding non-drug approaches for treatment of specific pain conditions. it's important that continued research explore how these approaches actually work and whether these findings apply broadly in diverse clinical settings and patient populations. compliance with the ethical issues  ethics approval and consent to participate animal and human experiment: n/a human data submission approval: n/a  consent for publication consent to publish individual person’s data: n/a  availability of data and materials data sharing: data will be provided upon request.  competing interests the author declares that he has no competing interest  funding funding from individual/organization: none page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue  authors’ contributions the individual contributions of authors: n/a abbreviations: neuropathic pain (nep); health-related quality of life (hrqol); health care resource use (hru); health care provider (hcp); emergency room (er); non-pharmacological pain treatment modalities (npms); post-traumatic stress disorder (ptsd); progressive muscle relaxation (pmr); low back pain (lbp); fear avoidance model (fam); cognitive- behavioral therapy (cbt); antecedent- belief-consequence (abc); abdominal aortic aneurysm (aaa); chronic postsurgical pain (cpsp); postsurgical pain (psp); complementary and alternative therapies (cat); maximum heart rate (maxhr); non-specific chronic low back pain (nsclbp); osteoarthritis (oa); randomized clinical trials (rcts); delayed-onset muscle soreness (doms); complementary and integrative medicine (cim); vocal music therapy (vmt); focused attention (fa), open monitoring (om); fibromyalgia (fm); rheumatoid arthritis (ra); expressive writing (ew); breast cancer (bc); irritable bowel syndrome (ibs); pain assessment screening tool and outcomes registry (pastor); patient-reported outcomes measurement information system (promis); completed integrative modalities pain care team (impact); functional restoration program (frp); validation of the defense and veterans pain rating scale (dvprs); post- traumatic stress disorder (ptsd); department of defense (dod); pain interference (pi); pain management task force (pmtf); emergency department (ed); animal assisted interventions (aai); animal assisted activities (aaa), animal assisted therapy (aat), service animal programs (sap); chest tube removal (ctr); somatosensory cortex (si); anterior cingulated cortex (acc); primary somatosensory cortex (si); secondary somatosensory cortex (sii); pain education (pe); clinical hypnosis (ch); assisted reproductive technology (art); expressive writing intervention (ewi); transcutaneous electrical stimulation (tens); transcutaneous electrical acupoint stimulation (teas); percutaneous electrical nerve stimulation (pens); repetitive transcranial magnetic stimulation (rtms); high-voltage pulsed current (hvpc); interferential current (ifc); neuromuscular electrical stimulation (nmes); pulsed electrical stimulation (pes); noninvasive interactive neurostimulation (nin); implanted peripheral nerve stimulator (pns); range of motion rom); hemiplegic shoulder pain (hsp); complex regional pain syndrome (crps); wireless implantable neural recording and stimulation (winers); trunk muscle training (tmt); postpartum lbp (pplbp); endometriosis- associated pain (eap); urinary retention (ur); traumatic brain injury (tbi); neuropathic pain (npp); spinal cord injury (sci); patellofemoral pain (pfp); spinal cord injury (sci); ankylosing spondylitis (as); rolland morris disability questionnaire (rmdq); western ontario macmaster (womac); international association for the study of pain (iasp); electroencephalographic (eeg); spinal manipulative therapy (smt); chronic thoracic pain (ctp); vertebral artery dissection (vad); chronic musculoskeletal pain (cmp); chronic tension-type headache (ctth); family health team (fht); pain associated with the spine (paws); standards for reporting interventions in controlled trials of acupuncture (stricta); chronic uncomplicated musculoskeletal pain associated with the spine (cmps); american academy of orthopedic surgeons (aaos) ; national institute for health and care excellence (nice); total knee arthroplasty (tka); ultra-restrictive opioid prescription protocol for pain (uropp); people living with hiv (plhiv); physical therapy page - © mat journals . all rights reserved journal of pharmacological research and developments volume issue (pt); multiple myeloma (mm); human embryonic stem cell (hesc); shared decision-making (sdm); occupational therapy (ot); american physical therapy association (apta); flexion, adduction, and internal rotation (fair); femoroacetabular impingement (fai); test d'Évaluation des membres supérieurs de personnes Âgées (tempa); multiple sclerosis (ms); brain derived neurotrophic factor (bdnf); yoga of awareness (yoa); integrated approach of yoga therapy (iayt); timed up and go test (tug); sit-to-stand (sts); handgrip strength (hgs); myofascial pain dysfunction syndrome (mpds) reference . tick h, nielsen a, pelletier kr, bonakdar r, simmons s, glick r, ratner e, lemmon rl, wayne p, zador v; pain task force of the academic consortium for integrative medicine and health. evidence-based no pharmacologic strategies for comprehensive pain care: the consortium pain task force white paper. explore (ny). may - 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understanding. can fam physician. sep; ( ):e - . review. pubmed pmid: ; pubmed central pmcid: pmc . . mccall m, thorne s, ward a, heneghan c. yoga in adult cancer: an exploratory, qualitative analysis of the patient experience. bmc complement altern med. jul ; : . doi: . /s - - - . pubmed pmid: ; pubmed central pmcid: pmc . active and passive use of green space, health, and well-being amongst university students international journal of environmental research and public health article active and passive use of green space, health, and well-being amongst university students elizabeth w. holt ,*, quinn k. lombard , noelle best , sara smiley-smith and john e. quinn department of health sciences, furman university, greenville, sc , usa; quinnlombard @gmail.com (q.k.l.); noelle.best@furman.edu (n.b.) yale school of forestry & environmental studies, yale university, new haven, ct , usa; sara.smileysmith@yale.edu department of biology, furman university, greenville, sc , usa; john.quinn @furman.edu * correspondence: elizabeth.holt@furman.edu; tel.: + - - - received: december ; accepted: january ; published: february ���������� ������� abstract: frequent exposure to green space has been linked to positive health and well-being in varying populations. yet, there is still limited research exploring the restorative benefits associated with differing types of green space use among students living in the university setting. to address this gap, we explored green space use amongst a population of undergraduate students (n = ) attending a university with abundant opportunities to access the restorative properties of nature. the purpose of this study was to examine the type and frequency of green space interactions that are most strongly associated with indicators of health and well-being, and investigate student characteristics associated with frequent use of green space. results revealed that students who frequently engage with green spaces in active ways report higher quality of life, better overall mood, and lower perceived stress. passive green space interactions were not strongly associated with indicators of health and well-being. having had daily interactions with green space in childhood was associated with frequent green space use as a university student, and identified barriers to green space use included “not enough time,” and “not aware of opportunities” these results could assist in the tailoring of “green exercise” interventions conducted in the university setting. keywords: green space; physical activity; well-being; university students . introduction a growing body of research has shown that frequent interactions with natural areas or green space are associated with positive measures of health and well-being amongst a variety of populations [ – ]. for example, indicators of health and quality of life are higher amongst those living in close proximity to parks or woodlands, building-dwellers with ample views of the natural environment from windows, and people who frequently spend time relaxing and/or being physically active in natural areas [ – ]. students attending universities often have abundant access to green spaces, providing varied opportunities for interactions that could improve and maintain health and well-being. yet, data characterizing the type and frequency of green space use and associated benefits conferred amongst university student populations is limited. higher quality of life has been reported amongst students who perceive their university campus to have higher levels of “greenness” [ ], and amongst university students who report higher amounts of overall time spent outdoors [ ]. while these studies provide initial data suggesting interactions with green spaces could positively impact students’ quality of life, detailed data is still needed on the varying types of green space use that occur in the university setting, as well as any associated health and well-being benefits. int. j. environ. res. public health , , ; doi: . /ijerph www.mdpi.com/journal/ijerph http://www.mdpi.com/journal/ijerph http://www.mdpi.com https://orcid.org/ - - - https://orcid.org/ - - - http://www.mdpi.com/ - / / / ?type=check_update&version= http://dx.doi.org/ . /ijerph http://www.mdpi.com/journal/ijerph int. j. environ. res. public health , , of previous research has shown that the mechanisms by which green space interactions could positively affect the psychological and/or physiological well-being of university students are varied. centrally located green spaces can provide opportunities for frequent social interactions, subsequently increasing community cohesion and improving mental health outcomes [ – ]. those who use green space frequently may reap psychological benefits through a more direct pathway: work from the field of environmental psychology suggests that immersion in a natural environment reduces exposure to the stimulating elements of everyday life and promotes “restoration” or recovery from the cognitive fatigue arising from daily stressors [ – ]. thus, natural environments can serve to buffer physiological and emotional stress and also to restore attention and focus [ – ]. finally, those who use green spaces regularly for physical activity can benefit from the many positive impacts that exercise can have on mental and physical health [ – ]. when physical activity is performed while one is immersed in a natural environment (“green exercise”) there may be additional, restorative benefits conferred [ – ]. given the wide array of ways in which green space use could benefit one’s health and well-being, exposure assessments need to incorporate measures of the varying types of green space interactions, and also the “dose” (frequency and duration) of exposure [ ]. such detailed exposure data on the type and frequency of green space interactions amongst university students could help to guide the focus of campus initiatives designed to improve student well-being. approximately million students in the usa [ ] and million students globally [ ] attend a college or university, and a growing number of these students report that they are experiencing high levels of stress [ ]. utilizing green spaces on or adjacent to university campuses may promote restoration and consequently serve as an effective strategy to help students to buffer the stressors of college. yet, it is not clear how often and in what ways university students are utilizing available green spaces, and very little is known regarding correlates of and barriers to frequent green space use in this specific population. in order to better understand how campus green space could be leveraged to promote and maintain student well-being, data are first needed on the types of green space interactions (e.g., active versus passive) that may be most restorative for university students. to address this gap, we conducted an exploratory study amongst a population of undergraduate students attending a university with abundant access to green space. the purpose of this study was twofold: ( ) to examine the type and frequency of green space interactions most strongly associated with indicators of health and well-being, and ( ) to investigate determinants of and barriers to frequent green space use. . materials and methods . . study area, survey development, and survey administration the study was conducted at a primarily undergraduate liberal arts university located in a suburban area of the southeastern usa (undergraduate enrollment in year of survey = ). the campus covers approximately acres that include a mix of open and wooded green space (figure ) as well as wooded areas with walking and running trails, a lake surrounded by a paved path, outdoor benches and tables overlooking water features, an outdoor amphitheater, well-maintained sidewalks between buildings, and a acre garden. a wooded mixed-use bike trail running through the surrounding town can be accessed from the campus on foot. study investigators developed an electronic survey assessing student characteristics, frequency and type of student interactions with green space, barriers to green space use, and perceived psychosocial and physical health. an iterative process was used to develop the survey tool: drafts were reviewed by content experts, and feedback on content, design, and electronic administration was incorporated into the final survey and protocol. the final survey, consent form, and study protocol were approved by the university’s institutional review board (furman university irb study number ) and were administered using qualtrics software(version . s, qualtricslabs, inc., provo, ut, usa, ). in order to maximize the response rate, minimize bias, and draw a representative sample of the university population, participating classroom instructors administered the electronic survey during class time. faculty in undergraduate int. j. environ. res. public health , , of courses representing a range of majors and class years invited students (n = ) to use their personal devices to open an individualized link to the consent form and survey. students who wished to participate in the survey signed the informed consent electronically, and proceeded to open the survey. any student who did not complete the survey in class received a follow-up email with a link to their unfinished survey. all surveys were completed in the fall semester, between april and september . int. j. environ. res. public health , , x of who wished to participate in the survey signed the informed consent electronically, and proceeded to open the survey. any student who did not complete the survey in class received a follow-up email with a link to their unfinished survey. all surveys were completed in the fall semester, between april and september . figure . (a) location of the study area (university) in the southeastern usa with greenville county in solid black, (b) land use and land cover classification from the national land cover database (nlcd ) for greenville, sc, usa (black outline); purple polygon represents furman university campus, (c) aerial image of the campus (white outline), and, (d) campus scale nlcd image modified to show areas with < % impervious surface (e.g., a golf course) as green space. . . study measures the survey tool contained questions assessing students’ use of green spaces in and around their university campus. because we felt that study participants could have different interpretations of the term “green space,” a standard green space definition was first identified. the research team reviewed the literature to compile a list of green space definitions used in previously published studies. then, they asked a sample of university students to rank these definitions in order of relevance to the university setting. the highest ranked definition of green space was, “area(s) containing elements of living systems that include plants and animals across a range of scales and degrees of human management, from a small urban park through a relatively ‘pristine wilderness’” [ ]. this definition was considered by study investigators to be appropriate for use in the university setting, as it covered all types of green space use from wooded trails to use of a golf course available to students. all survey questions referencing green space contained a hyperlink to this definition. students’ use of green space was measured in two ways: active use of green space was assessed by asking students how often they were physically active in green space for more than min a day (over the last month), and high active use was defined as ≥ times per week. similarly, passive use of figure . (a) location of the study area (university) in the southeastern usa with greenville county in solid black, (b) land use and land cover classification from the national land cover database (nlcd ) for greenville, sc, usa (black outline); purple polygon represents furman university campus, (c) aerial image of the campus (white outline), and, (d) campus scale nlcd image modified to show areas with < % impervious surface (e.g., a golf course) as green space. . . study measures the survey tool contained questions assessing students’ use of green spaces in and around their university campus. because we felt that study participants could have different interpretations of the term “green space,” a standard green space definition was first identified. the research team reviewed the literature to compile a list of green space definitions used in previously published studies. then, they asked a sample of university students to rank these definitions in order of relevance to the university setting. the highest ranked definition of green space was, “area(s) containing elements of living systems that include plants and animals across a range of scales and degrees of human management, from a small urban park through a relatively ‘pristine wilderness’” [ ]. this definition was considered by study investigators to be appropriate for use in the university setting, as it covered all types of green space use from wooded trails to use of a golf course available to students. all survey questions referencing green space contained a hyperlink to this definition. students’ use of green space was measured in two ways: active use of green space was assessed by asking students how often they were physically active in green space for more than min a day int. j. environ. res. public health , , of (over the last month), and high active use was defined as ≥ times per week. similarly, passive use of green space was measured by asking students how often they participated in non-physical activities in green space for more than min a day (over the last month), and high passive use was defined as ≥ times per week. prior to these questions, students were shown pictures of campus green spaces being used for a variety of activities, and were prompted to consider how they use green space, both for physical activities (running, hiking/walking, biking) and non-physical activities (sitting, studying, relaxing with friends, meditation). in order to compare our results with previous research and provide a global assessment of students’ overall time spent outdoors, we also used a previously published “green user scale” [ ]. this scale assessed students’ frequency of time spent in different activities conducted outdoors, on campus (walking to and from class, exercising, participating in organized sports, socializing with friends, club meetings, studying, eating, relaxing, and working). a score of ≥ on this scale was used to indicate frequent time spent outdoors [ , ]. survey questions assessing demographic characteristics and attitudes about and experiences with natural areas were used to identify student characteristics associated with frequent green space use. students were asked how busy they were with ( ) schoolwork and ( ) work or extracurricular activities, and responses were classified as very busy versus all other responses. because prior research has shown that use of green space as a child can shape attitudes about nature and activity patterns as an adult [ – ] childhood green space use was assessed for structured (i.e., organized sports) and unstructured (i.e., playing in a yard, woods, or park) activities. students were then classified according to whether or not they were “daily green space users” as a child. a student was designated as “valuing nature” if he or she responded “agree” or “strongly agree” to the question “being connected with nature is a necessity for human beings.” students generated key words that they associated with green space, and were asked if they visited green spaces to reduce stress. additional questions assessed barriers to green space use: students were asked whether they wished they visited green space more often, and what their primary barriers to visiting green space were. quality of life was measured via two questions adapted from previous studies conducted among undergraduate populations [ , ]. students were asked, “overall, how would you rank the quality of your life?”, and, “all things considered, how did you feel in the last days?” responses were initially rated on a -point likert scale and then dichotomized as “very satisfied” versus all other responses (high quality of life) and “very happy” versus all other responses (very happy last week). perceived stress was measured using the -item perceived stress scale [ ], which has previously been shown to be a valid and reliable tool for assessing perceived stress in university students [ ]. a student was designated as having low perceived stress if he or she scored a or below, which corresponded to the lowest tertile for the sample. self-rated general health was measured on a -point likert scale and student responses were further classified as health is excellent or very good versus all other responses [ , ]. “making health a priority” was defined by answering “agree” or “strongly agree” to the question “health is always the most important consideration when i arrange my daily activities.” . . statistical analysis frequencies of student characteristics, attitudes about and familiarity with nature, and measures of health and well-being were calculated for the entire study population and then by high versus not high use of green space (for active, passive, and overall green user score). then, chi-square tests were used to determine the statistical significance of differences. bivariate associations were considered to be statistically significant at the p < . level. we were interested in understanding the type and frequency of green space interactions (active use of green space, passive use of green space, and overall green user score) that are most strongly associated with indicators of well-being (feeling “very happy”, low stress, and high quality of life). therefore, we used separate multivariable logistic regression models, adjusted for gender, age, and students’ level of perceived “busyness”, to assess the relationship between each measure of well-being and each outcome (modeled as binary variables). for each outcome and each measure of well-being, we calculated an adjusted odds ratio int. j. environ. res. public health , , of (or) and % confidence interval (ci). all statistical analyses were performed using sas version . (sas institute, cary, nc, usa). . results . . sample characteristics and green space interactions of the students invited to participate in the e-survey, agreed to participate. of these, provided complete information on all questions regarding green space utilization and thus were included in analyses. characteristics of the study population and the full distribution of responses to key measures of health and well-being are shown in table s . the majority of students were freshmen or sophomores ( . %), white ( . %), and female ( . %). participants represented a wide range of majors across the university including the social and natural sciences, business, visual and performing arts, and the humanities. when asked to rate how busy they are on an average week during the semester, . % of students were “very busy” with school work, and . % were “very busy” with work or extracurricular activities. of study participants, . % reported that they were “very satisfied” or “satisfied” with their overall quality of life (high qol), . % reported that they felt “very happy” last week, . % rated their overall general health as “excellent” or “very good”, and . % reported they make health a priority in their daily activities. results from scales measuring students’ utilization of green space showed that . % were high active green spaces users, . % were high passive green space users, and . % had high overall green user scores. when asked to name their favorite green space to visit on campus for any type of activity, over half ( %) of students mentioned an activity that was related to water (relaxing by, walking or running around the lake, sitting by the koi pond). a majority ( . %) of students reported that they visit green space to alleviate stress, and . % answered “agree” or “strongly agree” that nature is a necessity for human beings (value connecting with nature). when asked to choose words that they associated with green space, the majority of students chose positive responses ( . % chose “adventure” and . % chose “feeling energized”). when asked how often they had interacted with green space as a child . % and . % reported having had daily, structured interactions and daily unstructured interactions, respectively. finally, the large majority ( %) of students indicated that they wished they visited green space more often. when asked to identify their primary barriers to green space use, % responded “not enough time”, and . % responded, “not aware of on-campus or off-campus green space opportunities”. . . characteristics associated with frequent green space use table shows participant characteristics according to high versus not high active use of green space, passive use of green space and overall green-user score. highactive use of green space was significantly associated with having had daily interactions with green space for structured and unstructured activities as a child, male gender, white race, and report of “making health a priority,” and “excellent or very good health.” high passive use of green space and high overall green-user score were each significantly associated with having had daily,structured interactions with green space as a child; however, no other characteristics were associated with overall green user score or passive green space use. table shows measure of well-being according to high versus not high active use of green space, passive use of green space and overall green-user scores. high active use of green space was significantly associated with low perceived stress, high quality of life, and feeling “very happy” last week. high passive green space use was not associated with any of the measures of well-being assessed. int. j. environ. res. public health , , of table . characteristics of the study population according to high versus not high active use of green space, passive use of green space, and overall green user score (n = ). active use of green space passive use of green space overall green user score high (n = ) not high (n = ) p high (n = ) not high (n = ) p high (n = ) not high (n = ) p white race, % . . * . . . . male gender, % . . * . . . . “very busy” with schoolwork, % . . . . . . “very busy” with extracurricular activities, % . . . . . . freshman, % . . . . . . sophomore, % . . . . . . junior, % . . . . . . senior, % . . . . . . daily, structured interactions w/green space as a child, % . . ** . . * . . *** daily, unstructured interactions w/green space as a child, % . . ** . . . . value connecting with nature, % . . . . . visit green spaces as a way to reduce stress, % . . . . . . make health a priority, % . . * . . health is excellent or very good, % . . ** . . . . * p < . , ** p < . , *** p < . for chi-square tests comparing the proportion with each characteristic by high versus not high use. high active use = physically active for ≥ min in an on-campus off-campus green space ≥ times per week. high passive use = sit, study, or eat for ≥ min in an on-campus or off-campus green space ≥ times per week. high green user score = score of ≥ on overall green user scale measuring frequency of time spent in outdoor activities. table . measures of well-being according to high versus not high active use of green space, passive use of green space, and overall green user score (n = ). active use of green space passive use of green space overall green user score high (n = ) not high (n = ) p high (n = ) not high (n = ) p high (n = ) not high (n = ) p felt “very happy” last week, % . . * . . . . * low perceived stress, % . . ** . . . . high quality of life, % . . ** . . . . * p < . , ** p < . , for chi-square tests comparing the proportion with each characteristic by high versus not high use. high active use = physically active for ≥ min in an on-campus off-campus green space ≥ times per week. high passive use = sit, study, or eat for ≥ min in an on-campus or off-campus green space ≥ times per week. high green user score = score of ≥ on overall green user scale measuring frequency of time spent in outdoor activities. . . models adjusted odds ratios and % confidence intervals for the associations between green space use and measures of well-being are shown in figure . relationships between students’ frequency and type of green space use and their reported happiness, stress, and quality of life were varied. a strong and statistically significant association was detected between active use of green space and each measure of well-being assessed (adj. or = . , % ci = . , . for feeling “very happy” last week, adj. or = . , % ci: . , . for low perceived stress, and adj. or = . , % ci = . , . for high quality of life). high passive used of green space was not associated with any of the measures of well-being, and a high green user score was associated with feeling “very happy” last week (adj. or = . , % ci = . , . ) but with not with low stress or high quality of life. int. j. environ. res. public health , , of int. j. environ. res. public health , , x of . . models adjusted odds ratios and % confidence intervals for the associations between green space use and measures of well-being are shown in figure . relationships between students’ frequency and type of green space use and their reported happiness, stress, and quality of life were varied. a strong and statistically significant association was detected between active use of green space and each measure of well-being assessed (adj. or = . , % ci = . , . for feeling “very happy” last week, adj. or = . , % ci: . , . for low perceived stress, and adj. or = . , % ci = . , . for high quality of life). high passive used of green space was not associated with any of the measures of well-being, and a high green user score was associated with feeling “very happy” last week (adj. or = . , % ci = . , . ) but with not with low stress or high quality of life. figure . adjusted ☨ odds ratios ( % cis) for measures of well-being associated with students’ active use of green space, passive use of green space, and overall green-user score. ☨ odds ratios are adjusted for gender and race and students’ perceived “busyness”; high active use = physically active for ≥ min in an on-campus off-campus green space ≥ times per week; high passive use = sit, study, or eat for ≥ min in an on-campus or off-campus green space ≥ times per week; high green user score = score of ≥ on overall green user scale measuring frequency of time spent in outdoor activities. . discussion many university campuses provide access to well-maintained areas of green space, giving students ample opportunities to benefit from the restorative properties of green spaces via both active and passive activities. our findings from this exploratory study of undergraduate students show not only that the frequency and type of green space use varies by key characteristics, but also that associations with health and well-being differ according to the type of utilization. students with frequent, active interactions were more likely to report high quality of life, low stress, and feeling “very happy” last week, and the adjusted odds ratios for these associations were consistently high (> . ) for each measure of well-being assessed. surprisingly, passive interactions with green space (sitting, studying, eating, or socializing in a natural setting) were not associated with well-being among university students, though they did show a trend in the positive direction. . . characteristics associated with use of green space by university students data from this study add important information on type and frequency of green space use amongst university students. it is clear from previous research that university students value an attractive campus environment as an integral part of the university experience [ ]. our results figure . adjusted † odds ratios ( % cis) for measures of well-being associated with students’ active use of green space, passive use of green space, and overall green-user score. ‡ odds ratios are adjusted for gender and race and students’ perceived “busyness”; high active use = physically active for ≥ min in an on-campus off-campus green space ≥ times per week; high passive use = sit, study, or eat for ≥ min in an on-campus or off-campus green space ≥ times per week; high green user score = score of ≥ on overall green user scale measuring frequency of time spent in outdoor activities. . discussion many university campuses provide access to well-maintained areas of green space, giving students ample opportunities to benefit from the restorative properties of green spaces via both active and passive activities. our findings from this exploratory study of undergraduate students show not only that the frequency and type of green space use varies by key characteristics, but also that associations with health and well-being differ according to the type of utilization. students with frequent, active interactions were more likely to report high quality of life, low stress, and feeling “very happy” last week, and the adjusted odds ratios for these associations were consistently high (> . ) for each measure of well-being assessed. surprisingly, passive interactions with green space (sitting, studying, eating, or socializing in a natural setting) were not associated with well-being among university students, though they did show a trend in the positive direction. . . characteristics associated with use of green space by university students data from this study add important information on type and frequency of green space use amongst university students. it is clear from previous research that university students value an attractive campus environment as an integral part of the university experience [ ]. our results corroborate this finding: the majority of students in this study held favorable views regarding nature/green spaces, reported that they value connecting with nature and chose words such as “adventure” and “feeling energized” to describe their attitudes about green space. yet, only one-third of our sample reported having frequent active and one-third reported having frequent passive interactions with green spaces. our analyses revealed key characteristics that were associated with frequent active, but not frequent passive, use of green space use, including white race, male gender, “making health a priority,” and self-rated “excellent or very good health.” while it was not surprising to see that active use of green space is associated with the markers of health, further exploration is needed to understand the observed sociodemographic differences. in our study, there was a strong and consistent relationship between having had daily, structured interactions with nature as a child and frequent use of green space as a university student for all types of interactions assessed (active, passive, and overall). these results are in accordance with previous int. j. environ. res. public health , , of research on the role that exposure to nature in childhood can play in the formation of patterns of behavior in adulthood. among adults, attitudes about nature as well as comfort spending time in nature are linked to the amount of time spent interacting with woodlands, plants, and animals as a child [ , ]. thompson and colleagues noted that adult patterns of green space utilization have been closely linked to patterns established in childhood, and that lack of experience with nature as a child may act to inhibit whether one seeks out opportunities to interact with green space as an adult [ ]. given recent trends showing a decline in “outdoor play” activities among usa children [ , ] we decided to separate childhood interactions with nature into “unstructured” (hiking, swimming in a creek, playing on a playground) and “structured” (organized sports such as soccer practice) activities. our results showed that both of these types of childhood interactions were associated with active use of green space in the university setting. the varying roles that childhood interactions with the outdoors (i.e., “wilderness play” versus outdoor, structured activities) can play in influencing adult behaviors is an interesting area of research that should be explored further using longitudinal data. . . active versus passive use of green space and student health and well-being our data from a sample of university students show that frequent, active use of green space is associated with higher quality of life, lower stress, and higher self-rated general health. these findings are supported by a body of observational and experimental research linking outdoor physical activity to positive health and well-being in other populations [ , , – ]. for example, in a meta-analysis which pooled data from studies, barton and petty showed that physical activity performed in natural settings can positively impact mood and self-esteem, and that this benefit occurs irrespective of duration, intensity, location, or gender [ ]. students in this study who report frequent time spent being physically active outdoors could be benefiting from the mood-enhancing benefits associated with exercise, the restorative properties associated with exposure to a natural environment, or perhaps most interestingly, a synergistic benefit conferred from physical activity performed in a natural setting. our study was not designed to determine the specific mechanism by which exercising outdoors in natural areas can impact health and well-being, and thus we were unable to disentangle the relative contributions to well-being that come from exercise versus exposure to natural settings. previous research suggests that exposure to nature could play a synergistic role in mood-enhancement during physical activity [ , ]; however, future work in this area is warranted. for example, it would be valuable to compare physical activity efforts of varying duration and intensities in a variety of indoor and outdoor environments; particularly given the popularity, heavy use, and costs of university gyms and indoor recreation centers. future studies conducted in university populations could assess whether a lower-met activity such as leisurely walking on an outdoor path is associated with the same health, quality of life, and mood enhancing benefits as vigorous exercise performed outdoors. finally, an assessment of whether outdoor physical activity is performed alone, or with a friend/in a group would build upon previous research [ ] and assist in understanding the additional positive effects conferred by social interactions during green exercise. approximately one-third of students in our study reported that they sit, study, or eat in green space four or more times per week (high passive users). however, no association was detected between passive use of green space and any of the measures of health and well-being assessed. previous research from the field of environmental psychology suggests that frequent time spent outdoors in any type of activity should promote restoration and subsequently reduce stress and improve quality of life [ ]. thus, it is not clear why passive interactions with green spaces seem to be less restorative than expected among students in this study. our data suggest that students in the university setting may need to be physically active outdoors to reap the psychological restoration that interacting with green spaces can provide. it may be that green space interactions have the greatest impact on students’ well-being when they provides an “escape” from the stressors of university life: previous research suggests that environment-oriented activities conducted in natural areas are more effective at increasing restoration than socially oriented activities [ ]. it may also be true that the rigors of university life make it difficult int. j. environ. res. public health , , of for students to fully relax when interacting with green spaces in more passive ways. in our engaged, highly involved, and achievement-oriented university student population, a greater “dose” of passive green space may be needed for engagement with nature and related positive effects on well-being. future research comparing the levels of restoration that students perceive to be associated with specific activities conducted in green spaces (i.e., socializing, studying, eating, and/or using social media) would add important data to the field. . . promoting green space use in the university setting recently, there have been increased efforts to implement interventions for stress reduction in the university setting, including campus initiatives such as yoga, mindfulness, and pet therapy [ – ]. results from our study suggest that promoting opportunities for students to use green space regularly—particularly in active ways—could also be beneficial in reducing stress and improving quality of life. many universities such as the one in this study already provide features which are known to promote green space use, including convenient access to wooded trails, well maintained natural areas, and key built environment designs such as marked paths through natural areas or around water elements [ ]. because we were interested in understanding why some students do not use or underutilize available green spaces, we assessed students’ barriers to green space use. our results showed that students identified “not enough time” and “not aware of on-campus or off-campus green space opportunities” as primary barriers to using green space. these results are in accordance with previous research, which has shown that familiarity with or knowledge of green spaces play a key role in utilization [ , – ], and that “time flexibility” and “physical activity-supporting places” are important factors in supporting green exercise [ ]. addressing students’ perceived lack of time and increasing awareness of opportunities to use green space for restoration may be important areas of focus for universities seeking to promote health and well-being amongst students. universities should continue to maintain paths through natural areas, while also adding educational efforts to increase students’ awareness around the location and availability of existing green spaces, and the potential quality of life benefits from regular use. administrators, faculty and student life staff could facilitate green space use via a variety of university programming options: campus wellness programs can build familiarity by guiding students through available walking/running trails, and promote their use for stress reduction activities. university instructors could increase “active educational techniques” such as “think pair share discussions” performed while walking outdoors [ ]. finally, because data from our study showed that students hold a clear affinity for both active and passive activities performed near water features and gardens, regular use of these resources should be facilitated by providing benches and/or activity trails adjacent to such areas. . . strengths and limitations this study has many distinctive strengths when compared to prior research in this area, including a high response rate, direct measurement of varying types of green space use (active versus passive use), a standardized definition of green space that is appropriate for the university setting, and the use of previously validated scales to measure health and well-being. our study was able to measure the actual frequency and duration of students’ interactions with green space, providing a more accurate marker of green space “dose” than previously used surrogates for green space exposure such as distance from a park or density of tree canopy cover. the sampling methods and in-class survey administration used in our study resulted in a > % response rate, greatly reducing the potential for volunteer bias that is often a challenge in survey research. despite these strengths, there are some limitations. the cross-sectional nature of the survey allows us to observe associations but not to assess the causal relationship between students’ use of green space and their perceived health and well-being. we recognize that the drivers of health and well-being of university students are multi-faceted, and that despite multivariable adjustment for student characteristics such as “perceived busyness”, residual confounding could still exist. even though we carefully considered the order of int. j. environ. res. public health , , of survey questions and did not disclose the research hypothesis to students, some differential recall may still exist. the homogeneity of our sample reduces the potential for confounding on key characteristics such as student population and student experience ( % live on campus within walking distance of class); however, this homogeneity may limit the ability to generalize results to diverse cohorts of university students. similarly, because this study was conducted at a primarily undergraduate university located in a suburban setting, there may be limited ability to generalize to larger universities that have a higher percentage of part-time or commuter students, and/or to urban university campuses. additional studies of students attending universities with greater diversity in both student population and campus features (i.e., urban campuses) should be conducted. finally, we chose to administer the survey during a period of more mild temperatures (average temperatures during the study period ranged from the mid s to low s (degrees farenheit)). additional data points collected over a -month period and/or in university settings with more extreme climates would assist in determining how patterns in student green space use vary with geography, season, and more busy or less busy periods in the academic calendar. . conclusions this exploratory study provides a detailed examination of green space use amongst university students: we identified not only key characteristics associated with green space use but also the specific types of interactions (i.e., active versus more passive) that are most closely associated with students’ health and well-being. our results show that amongst students attending a university campus with abundant access to natural areas, active interactions with green spaces are associated with benefits to health and well-being, including high quality of life, low perceived stress, and feeling “very happy” last week. our data also showed that students who regularly interacted with green spaces as children were more likely to report frequent green space use as university students, providing evidence to support the hypothesis that childhood interactions with nature can impact engagement with natural areas in adulthood. a body of research highlights the role that exposure to and engagement with natural areas can play in the promotion and maintenance of population health: data from this study extend this research to include students living in the university setting. at many universities, students have access to campus and nearby green spaces, and regular use of these resources could serve to facilitate feelings of restoration and consequently help to buffer the stressors of college. our results provide preliminary evidence that initiatives to increase access to and awareness of green spaces could be beneficial therapeutic interventions for stress reduction in the university setting. such efforts would be particularly effective if they emphasize opportunities for students to integrate active use of green space into their existing routines. future research should explore the design and testing of “green exercise” interventions conducted in the university setting. supplementary materials: the following are available online at http://www.mdpi.com/ - / / / /s , table s : characteristics of the study population (n = ). author contributions: for research articles with several authors, a short paragraph specifying their individual contributions must be provided. the following statements should be used conceptualization, e.w.h., q.k.l. and j.e.q.; methodology, e.w.h.; software, e.w.h. and j.e.q.; analysis, e.w.h.; investigation, e.w.h., q.k.l. and j.e.q.; writing—original draft preparation, e.w.h.; writing—review and editing, e.w.h., n.b., s.s.-s., and j.e.q.; project administration, e.w.h. and j.e.q. funding: this research received no external funding. acknowledgments: we would like to thank all course instructors at furman university who assisted in data collection. we would also like to thank furman photography for the images used in figure of this publication. conflicts of interest: the authors declare no conflict of interest. http://www.mdpi.com/ - / / / /s int. j. environ. res. public health , , of references . bratman, g.n.; daily, g.c.; levy, b.j.; gross, j.j. the benefits of nature experience: improved affect and cognition. landsc. urban plan. , , – . 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[crossref] [pubmed] . kaddoura, m. think pair share: a teaching learning strategy to enhance students’ critical thinking. educ. res. q. , , . © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . /archpedi. . . http://dx.doi.org/ . /ciec. . . . http://dx.doi.org/ . /s - - - http://dx.doi.org/ . /ijerph http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /j.landurbplan. . . http://dx.doi.org/ . /j.edurev. . . http://dx.doi.org/ . / . . http://dx.doi.org/ . /ijerph http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /j.jad. . . http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /pubmed/fdq http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /s - - -x http://dx.doi.org/ . /ijerph http://dx.doi.org/ . /ijerph http://www.ncbi.nlm.nih.gov/pubmed/ http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	materials and methods 	study area, survey development, and survey administration 	study measures 	statistical analysis 	results 	sample characteristics and green space interactions 	characteristics associated with frequent green space use 	models 	discussion 	characteristics associated with use of green space by university students 	active versus passive use of green space and student health and well-being 	promoting green space use in the university setting 	strengths and limitations 	conclusions 	references consensus recommendations from the strategic planning summit for pain and palliative care pharmacy practice vol. no. may journal of pain and symptom management special article consensus recommendations from the strategic planning summit for pain and palliative care pharmacy practice christopher m. herndon, pharmd, bcps, cpe, scott a. strassels, pharmd, phd, bcps, jennifer m. strickland, pharmd, bcps, lee a. kral, pharmd, bcps, david s. craig, pharmd, bcps, suzanne amato nesbit, pharmd, cpe, rebecca s. finley, pharmd, ms, and mary lynn mcpherson, pharmd, bcps, cpe southern illinois university edwardsville (c.m.h.), edwardsville, illinois; saint louis university, st. louis, missouri; division of pharmacy practice (s.a.s.), university of texas at austin, austin, texas; hpc healthcare, inc. (j.m.s.), lakeland, florida; university of iowa hospitals and clinics (l.a.k.), iowa city, iowa; psychosocial, department of pharmacy (d.s.c.), moffitt cancer center, tampa, florida; department of oncology (s.a.n.), sidney kimmel comprehensive cancer center, the johns hopkins hospital, baltimore, maryland; jefferson school of pharmacy (r.s.f.), thomas jefferson university, philadelphia, pennsylvania; and university of maryland school of pharmacy (m.l.m.), baltimore, maryland, usa abstract pain and symptoms related to palliative care (pain and palliative care [ppc]) are often undertreated. this is largely owing to the complexity in the provision of care and the potential discrepancy in education among the various health care professionals required to deliver care. pharmacists are frequently involved in the care of ppc patients, although pharmacy education currently does not offer or require a strong curriculum commitment to this area of practice. the strategic planning summit for the advancement of pain and palliative care pharmacy was convened to address opportunities to improve the education of pharmacists and pharmacy students on ppc. six working groups were charged with objectives to address barriers and opportunities in the areas of student and professional assessment, model curricula, postgraduate training, professional education, and credentialing. consensus was reached among the working groups and presented to the summit advisory board for adoption. these recommendations will provide guidance on improving the care provided to ppc patients by pharmacists through integrating education at all points along the professional education continuum. j pain symptom manage ; : e . � u.s. cancer pain relief committee. published by elsevier inc. all rights reserved. key words pharmacy, palliative care, pain, end of life, hospice, pharmacist, pharmacotherapy address correspondence to: christopher m. herndon, pharmd, bcps, cpe, southern illinois university edwardsville, box -sop, edwardsville, il , usa. e-mail: cherndo@siue.edu or http://www.pharmacypainsummit.com accepted for publication: may , . � u.s. cancer pain relief committee published by elsevier inc. all rights reserved. introduction untreated and undertreated pain and symp- toms at the end of life (eol) represent an inter- national problem. yet, despite the advances made in the understanding and treatment of - /$ - see front matter doi: . /j.jpainsymman. . . mailto:cherndo@siue.edu http://www.pharmacypainsummit.com http://dx.doi.org/ . /j.jpainsymman. . . http://dx.doi.org/ . /j.jpainsymman. . . http://dx.doi.org/ . /j.jpainsymman. . . vol. no. may herndon et al. pain and related symptoms, and the availability of evidence-based practice guidelines, unac- ceptable outcomes for patients with pain and re- lated symptoms continue to occur, resulting in unnecessary suffering and increased health care costs. e a recent health, united states survey suggests that approximately half of those surveyed over the age of reported pain for more than one year. european one-month prevalence of moderate-to-severe chronic non- cancer pain approaches %. additional data support the need for improved pain care in the cancer treatment and postoperative care settings. , , even within hospice care settings, undertreated pain appears to still be of con- cern. , despite numerous advances in our un- derstanding of the diagnosis and treatment of pain and symptoms at the eol, we continue to see evidence of resource underuse, dispar- ities in care, and unnecessary barriers created by health professionals. these barriers often- times stem from a lack of understanding, nega- tive stigmas about opioid analgesics, and inappropriate patient stereotyping. e an exhaustive review of factors contributing to suboptimal pain management is beyond the scope of this summary; however, the relative paucity in education of both the health care provider (hcp) and the patient is a major con- tributor to these shortcomings. barriers are commonly identified as personal (patient), professional, and regulatory. the ability to communicate pain and symptoms may be problematic for older and noncommunicative patients and for those from certain cultures and of certain ethnicities. , , health profes- sionals’ ability to recognize and treat pain in noncommunicative patients is likewise difficult without proper training. health literacy likely also plays a functional role as a barrier to effec- tive pain management and symptom control. with these barriers in mind, pharmacy is uniquely positioned to contribute to the care of patients with pain and related symptoms. of recent concern is the considerable rise in opioid-related overdose and associated death. there are likely many contributing factors to this phenomenon. shift of opioid prescribing from pain specialist to primary care provider, relative availability, and a lack of understanding in the identification of misuse or abuse certainly are suspect. balancing this public health con- cern of abuse with the continued focus on the patient with pain becomes increasingly difficult. attempts to curb the nonmedical use and diver- sion of opioid analgesics are evidenced by in- creasing regulatory scrutiny, legislated patient education, and prescription monitoring. prac- tice guidelines also have addressed the use of these medications in noncancer pain. the idea of practicing a standard approach to the monitoring of these medications and evalua- tion of the patients using them has become more widely accepted within the health care community. pharmacists, with the proper edu- cational background, may assist in the monitor- ing and evaluation of opioid therapy in numerous practice settings. pain and symptom management through in- terdisciplinary care has been unequivocally proven to achieve better outcomes compared with that of standard medical practice. e as experts in pharmacotherapy, pharmacists are key components to the provision of pain and palliative care (ppc) treatment, given the com- plexity of drug combinations frequently used. as a result of the diversity of pharmacy with re- spect to education and practice, it becomes necessary to consider the influence a pharma- cist’s attitudes, knowledge, and skills may have on a patient. before effective ppc treatment may be provided for a patient, positive and negative barriers to care must be identified. positive pharmacy barriers represent those bar- riers created by pharmacists as a result of direct interference with ppc patient care. examples may include refusal to fill a prescription be- cause of lack of understanding of the medi- cation, extensive follow-up and scrutiny of prescriptions based on ethnicity or socioeco- nomic status, and stereotyping associated with opioid prescriptions. negative pharmacy bar- riers also result from a lack of appropriate phar- macist education but are a consequence of avoidance or lack of action by the pharmacist or pharmacy. these types of barriers may be the most detrimental to patient care because the pharmacist may be imposing these barriers unwittingly. examples may include not recog- nizing that their ppc skills are substandard, not seeking continuing education (ce) to im- prove pain and symptom management, failure to stock adequate supplies of essential medi- cations for ppc patients, and failure to provide adequate patient-specific counseling and education. , vol. no. may pain and palliative care pharmacy practice in recent years, we have seen efforts to im- prove the education and understanding of ppc for physicians (education on palliative and end of life care, epec), nurses (end of life nursing education consortium, elnec), and social workers (advocating for clinical ex- cellence project). e in , the national pain and palliative care summit, hosted by the ohio state university, convened health professionals from all stakeholder disciplines to identify opportunities and barriers to qual- ity pain and symptom care for each of the pro- fessions. the pharmacist working group at this particular meeting identified a pharmacy- specific summit as the key objective in moving this charge forward and reaching consensus on recommendations for advancing the pro- fession of pharmacy in its care for patients with pain and symptom management needs. continuum of education for pharmacists the education of health care professionals is complex. pharmacy, similar to medicine, nurs- ing, and social work, uses a step-wise didactic strategy, in which students take increasingly difficult and clinically applicable courses and are immersed into various practice settings during the entry-level degree program (doctor of pharmacy, pharmd). the last year of the de- gree program typically consists primarily of clinical experience clerkships. after the re- ceipt of the professional pharmacy degree, these professionals may choose to enter the practice of pharmacy, continue through post- graduate residency or fellowship training, or seek advanced degrees. whereas postgraduate residency training has been standard in medi- cine, other professions, such as pharmacy, nursing, and social work, are increasingly offer- ing these opportunities to further the clinical competency of practitioners before entering into the workforce. specific to the pharmacy profession, graduates may choose to complete a general practice postgraduate residency and more specialized, targeted training experi- ences (postgraduate year [pgy- ] and post- graduate year [pgy- ] specialty residencies, respectively). pharmacy schools in the u.s. and its territo- ries are accredited by the accreditation council for pharmacy education (acpe). the acpe does not directly dictate course offerings or con- tent within schools of pharmacy; however, it does provide guidance on the general compe- tencies a pharmacy student must possess at graduation. the acpe provides standards for schools of pharmacy it accredits as a guideline for creation and ongoing improvement of these programs. in the united states, once a pharmacy stu- dent graduates, he or she must pass two or more licensing examinations. the first exam is state specific and pertains to the laws and regulations of the practice of pharmacy and the controlled substances act of that particular state and the federal government (multi-state pharmacy jurisprudence examination). the second exam is a minimum competency, practice-related examination covering the clin- ical and core aspects of the profession (north american pharmacist licensure examination or naplex). the law exams are offered by the respective state boards of pharmacy, and the naplex is offered by the national associ- ation of boards of pharmacy (nabp). some states may additionally require other assess- ments of competency, such as compounding (new york). residencies are the most commonly sought postgraduate training (pgt) in the profession of pharmacy. these programs are highly indi- vidualized, although recently the profession has attempted to provide more direction and consistency among these programs. to ensure high-quality learning experiences, residency programs may seek accreditation through the american society for health system pharmacy (ashp), which is a prerequisite for pass- through funding from the centers for medi- care and medicaid services. this organization accredits both general practice residencies (also known as pgy- residencies) and spe- cialty residencies (frequently referred to as pgy- residencies). pgy- training is usually highly diverse, with a broad range of experi- ences within hospital, managed care, and com- munity pharmacy. pgy- programs usually represent a more focused, specialized area of practice (i.e., ppc, psychiatry, infectious dis- ease, and so forth). once a graduate has successfully passed all licensure examinations, the pharmacist then may practice pharmacy within the state(s) in vol. no. may herndon et al. which he or she is licensed. pharmacist li- cense renewal through the respective state board of pharmacy usually requires the com- pletion of acpe-accredited ce, usually contact hours per calendar year. these pro- grams may be valuable sources of ongoing ed- ucation. additionally, some states have provided direction and legislation on which types of educational venues and topics the re- newing pharmacist must seek. some states dictate that pain- or palliative care-related ce must be obtained on an annual or bian- nual basis. these educational requirements dictate the bare minimum required by each respective licensing state. for pharmacists who seek additional train- ing or education in a specific disease state or area of practice, opportunities include certifi- cate programs and mini-fellowships. certifi- cate programs generally consist of focused areas of study and are usually accredited by acpe for the provision of ce credits on com- pletion. in contrast to certificate programs, pharmacists may seek certification in specialized areas of practice, knowledge, or skills. fre- quently, certification represents the successful completion of an examination above and be- yond minimum competency in a distinct area of practice or care. currently, numerous certi- fication examinations exist for pharmacists specifically and health care professionals (pharmacists are included under this cate- gory). credentialing examinations within the pharmacy profession include those offered by the board of pharmaceutical specialties (bps) on pharmacotherapy, nutrition, nuclear pharmacy, oncology, psychiatry, and ambula- tory care. additionally, the american society for consultant pharmacists offers a pharma- cist-only board certification examination in ge- riatrics. currently, two multidisciplinary ppc examinations exist for which pharmacists may sit (american society of pain educators [aspe] and american academy of pain man- agement [aapm]). by understanding the educational contin- uum of a pharmacist, and the diverse practice areas, the strategic planning summit for pain and palliative care pharmacy practice (sum- mit) sought to identify strategies to improve the attitudes, knowledge, and skills of the pro- fession as a whole during each of the above- mentioned vehicles for instruction. the summit the summit was held in october . it was developed by a multidisciplinary advisory board, including pharmacists, physicians, and nurses. the advisory board identified key stake- holders, including professional organizations and individuals with either a vested interest or an expertise in the area of pharmacy prac- tice and/or ppc. individuals were chosen based on previous or current efforts in educa- tion, policy, committee work, or practice. invi- tations were sent to these individuals and the executive directors of pharmacy organiza- tions, three physician organizations, four nurs- ing organizations, and pain or palliative care interdisciplinary organizations. invitations also were sent to international organizations representing ppc professionals. seventy-nine participants attended the summit (appendix i), with five professional stakeholder organiza- tions represented. the summit objectives were constructed to examine the education and development of pharmacists in ppc across the entire profes- sional continuum. goals and objectives for the summit were classified as: ) professional degree program training, ) postgraduate formal train- ing, ) professional ce, and ) certification and credentialing (table ). to reach as many phar- macists and pharmacists-in-training as possible, six working groups were created with more spe- cific objectives as they related to ppc education and assessment of pharmacists or pharmacy students. the working groups were assigned the following topics: assessment, curriculum, pgt, core training, practice-specific training, and credentialing. they were charged with as- sessing current policies and practices when avail- able, providing recommendations on change for these policies and practices, or creating the framework for such in their absence. each work- ing group developed consensus recommenda- tions and presented them to the advisory board for adoption and dissemination. working group recommendations assessment working group the assessment working group was charged with objectives primarily within the pregraduate scope of pharmacist education; however, assess- ment strategies throughout the professional table goals and objectives for the strategic planning summit training continuum goal objective pregraduate training . increase/standardize didactic exposure to ppc during the professional degree program . increase/standardize experiential rotation/ clerkship exposure to ppc during introductory and advanced patient care experiences during the professional degree program . identify opportunities and recommend strategies to strengthen current processes within key organizations as they relate to ppc education to pharmacy students, trainees, and practitioners . review and potentially revise iasp curricular recommendations for schools of pharmacy postgraduate training . improve/increase exposure to ppc during pgy- general pharmacy residencies . review ashp accreditation standards for pgy- specialty residencies in ppc . improve consistency among pgy- specialty residencies in areas of practice outside ppc (geriatrics, hematology-oncology, internal medicine, and pediatrics) . develop recommendations for elective objectives to be submitted to ashp for inclusion into pgy- residency training standards as they relate to ppc . review current ashp pgy- ppc residency standards and provide recommendations . review current ashp pgy- residency standards for geriatrics, hematology- oncology, internal medicine, and pediatrics and provide recommendations for elective objectives for each of these experiences as they pertain to ppc professional training improve the skills, attitudes, and knowledge base of practicing licensed pharmacists regarding ppc in all practice settings identify core content for ppc certificate programs across practice settings. develop content for ‘‘train-the-trainer’’ educational programming credentialing reach consensus on ppc credentialing for pharmacists with therapeutic expertise or focused practice settings . review current credentialing opportunities . recommend future credentialing opportunities vol. no. may pain and palliative care pharmacy practice educational continuum were found to directly affect pregraduation education (i.e., lack of ex- pert preceptors or faculty). specifically, this working group sought to identify areas in which to effect change to ensure adequate education of pharmacists-in-training during professional degree programs outside specific curricular rec- ommendations. partnering organizations were identified for summit invitation based upon considerations of how pharmacists, pharmacy students, and schools of pharmacy are assessed. these groups included professional, regula- tory, interprofessional, and patient advocacy groups, as well as large employers. a complete list of stakeholder organizations identified by the assessment working group is presented in appendix ii (available at jpsmjournal.com). ad- ditionally, the assessment working group pro- duced consensus recommendations and associated strategies for implementation, which are presented in table . curricular working group the curricular working group was charged with reviewing the current international asso- ciation for the study of pain (iasp) outline curriculum on pain for schools of pharmacy prepared by the iasp’s ad hoc subcommittee on university courses and curricula published in . after the review of the iasp model curriculum, the working group sought to pro- vide recommendations and an updated out- line for courses on ppc as it relates to today’s pharmacy programs. pharmacy professional degree program curricula have changed dra- matically over the past two decades with re- spect to length of program, experiential learning, and a shift in focus to integrated and case-based learning. although the degree program length has been extended, the curric- ula of most schools of pharmacy continue to be strained, resulting in little room for addi- tional courses. with this in mind, the curricu- lar working group provided recommended outlines, competencies, and learning experi- ences throughout the professional degree pro- gram from a required and elective coursework approach. model curricula were combined to represent experiences in both pain manage- ment and palliative and eol care. from a didactic approach, the elective courses are generally more flexible in terms of time devoted to topics and, therefore, a greater depth and breadth of material and learning experiences may be incorporated. a model syllabus for an elective didactic course http://jpsmjournal.com table recommendations and strategies for assessment in pharmacy for ppc recommendations strategies develop and share educational assessment tools for ppc � encourage faculty to post existing tools on peas (aacp) � encourage aacp to put out a call for examples of educational assessment tools for ppc and programming ideas � solicit allocation of grant funding and issuing rfps for development and validation of educational assessment tools � identify existing educational assessment tools across disciplines and delineate number of practitioners and minimum competencies for entry-level graduates � identify and catalog programs on educational assessment in ppc, preceptor training, and so forth � request aacp to identify good models define minimum competencies for entry-level graduates � quantitative and qualitative analysis of what is currently addressed in curricula? � survey views of current pharmacy practitioners, other health care professionals, and patient advocacy groups (e.g., apf, american chronic pain association) � target new graduate and alumni surveys specifically regarding ppc (aacp) � objective structured clinical examinationdpublications and training programs to train faculty to conduct (aacp or specialty organizations; e.g., aps for interdisciplinary training) advocate for research and innovation in teaching methodologies and curricular design � incorporate use of real (volunteer) and simulated patients in the classroom as a method of teaching � identify decision tools, algorithms, resources, and databases that pharmacy students should learn to use in practice � encourage the development of case studies in all areas of ppc that might be used interprofessionally (simulation) and encourage publication and foundation grants to develop and publish � ensure that related topics are integrated across the curriculum (i.e., law, regulatory affairs, communications, ethics, and so forth) and highlight effective curricular models � encourage pedagogical models that include interprofessional learning for ppc (added specificity to acpe accreditation standards) � request aacp to publish a special ajpe issue on innovative teaching methods in ppc develop models for preceptor training in ppc � include broad training beyond pharmacotherapy (i.e., behavioral, ethics, communication, law/regulatory, abuse and diversion, risk management, and assessment skill evaluation) � encourage professional organizations to include in meeting programming or develop online ce programs � pgy- residency preceptor education in ppc � advocate that students should work with patients with pain syndromes, including chronic, geriatric, pediatric, and cancer as part of their experiential education � recognize excellence in precepting in this area � request acpe to identify good models and present identify and expand the pool of preceptors with expertise in ppc � network through professional organizations (prns, special interest groups) � outreach to recognized specialists in ppc disseminate information regarding career paths in ppc � identify career path models of successful practitioners � promote student organization activities � apha pathway programdspecialty area � articles in pharmacy today highlighting pharmacists working in ppc � create shadowing and mentoring opportunities with specialty practitioners � professional organization website information � special grand rounds or lecture series � leadership skills in ppc (continued) vol. no. may herndon et al. table continued recommendations strategies enhance naplex assessment regarding ppc � evaluate innovative assessment models incorporating psychosocial, communications, ethics, and so forth � encourage practitioners to complete blueprint role delineation/scope of practice surveys � ensure naplex item writers include practitioners with expertise in ppc advocate the design and delivery of ce programs to enhance knowledge, skills, and attitudes regarding ppc � quantitative and qualitative analysis of ce that is currently devoted to the topic � advocate minimum requirements in this area to state boards of pharmacy � advocate for interprofessional ce programming (for the team, by the team)dsolicit educational grants for development � ensure ce providers are aware of the dimensions of ppc education and include all in ce programming � develop competence assessment model for providers and self-assessment tools for practitioners � models to assess outcomes on practicedencourage portfolios and other systems to provide structured feedback of effectiveness to ce providers encourage employers to support continuing professional development in ppc � educational modules that can be used in practice settings advocate that employers include competence assessment of pharmacists in caring for patients with pain or receiving palliative care as part of regular performance evaluations � document participation in ce � use validated assessment tools to document presentation to jcpp regarding importance of pharmacist role in ppc � formal request to jcpp with supporting information (pain most common reason for medical attention and so forth) advocate nabp to include appropriate expectations for ppc in community pharmacy accreditation � write a letter and send the white paper � develop competence assessments enhance curricular requirements for ppc � advocate inclusion of questions regarding competencies in ppc in aacp standardized (or school specific) surveys and include preceptors, students, new grads, alumni, and faculty � request acpe to address emphasis on ppc in standards and curricular assessment develop and publish a white paper summarizing the roles of pharmacists on interprofessional teams in ppc, including education and training of pharmacists in this area, competency assessment, and credentialing create and submit poster summarizing summit findings to organizations represented explore the desirability and feasibility of an interprofessional organization focusing on pharmacotherapy of ppc vol. no. may pain and palliative care pharmacy practice within a professional pharmacy program is pre- sented in table . given the already full curric- ula of most schools of pharmacy, the working group was doubtful that a required course could be devoted to ppc. thus, key objectives were identified with corresponding time rec- ommendations in which to deliver the content within a course already offered within the cur- riculum. consensus was achieved on a total of six -minute lecture blocks ( minutes) be- ing necessary to adequately deliver essential content to students of pharmacy in a required course. the breakdown of content and time allocation is provided in table . note that sev- eral of the essential content recommendations are included but not allocated time, to ensure that these items are covered in previous, prerequisite coursework. these competency statements are provided as a tool for the fac- ulty member or curriculum committee to eval- uate current content delivery within other courses. during experiential education, introductory pharmacy practice experiences (ippe) and advanced pharmacy practice experiences (appe) oftentimes lend themselves to varying competencies based on the timing of comple- tion during the curriculum. as the name im- plies, ippe rotations are offered early in the program and may be limited to hospital and table model syllabus for elective didactic coursework within a pharmacy professional degree program recommended books/reading � ppc chapter within given pharmacy therapeutics textbook � pain and/or palliative care pocket handbook that is inexpensive and free from commercial bias b principles of analgesic use in the treatment of acute and cancer pain (american pain society) b the massachusetts general hospital handbook of pain management b pain.edu handbook b others � books on insight and philosophy of ppc b dying well (ira byock) b the truth about chronic pain (arthur rosenfeld) b american book of living and dying (richard gross) b how we die (sherman nuland) b the fall of freddie the leaf (leo f. buscaglia) � memoirs and blogs (geripal, pallimed) � fast facts and concepts (end of life/palliative education resource center) recommended teaching activities � writing a condolence letter � completing a journal (i.e., reflections on self-learning, writing a self-eulogy, out of class discussion boards, and so forth) � visit to a funeral home � calculation of equianalgesic doses of opioids for oral, intravenous, epidural, and intrathecal administration recommended didactic content � introduction to pain management and palliative care � interdisciplinary nature of pain management and palliative care (physician, nurse, social worker, pharmacist, clergy, psychology, music/art counselor, massage therapy, and so forth) � review of physiology of pain and pharmacology of analgesics, co-analgesics, and nonpain symptom medications � loss and dying � complex pain syndromes b pretreatment of acute pain (preemptive analgesia) b complicated postoperative or traumatic pain b temporomandibular joint pain b metastatic bone pain b phantom limb and amputation stump pain b sympathetically maintained pain (complex regional pain syndrome) b pain of vascular origin (pad) b pain in hematological disease (e.g., sickle cell anemia and hemophilia) b wound pain (including fungating wounds and care of fistulas) b mucositis pain b burn pain b self-treated pain conditions b failed back pain b pain in comorbid conditions (depression, anxiety, schizophrenia, and so forth) � pain and symptom management in other disease states b parkinson’s disease b multiple sclerosis/amyotrophic lateral sclerosis/other neurologic b post-cerebrovascular accident b congestive heart failure b human immunodeficiency virus b chronic obstructive pulmonary disease � pharmaceutical issues/drug dosing b opioids b ketamine b lidocaine b topical analgesics b cannabinoids b psychostimulants b altering dosage formulations b relevance of drug allergy history � alternative interventions b herbals b music therapy b memory book/journaling b dealing with spiritual pain b cognitive behavioral therapy b alternative therapy (art therapy, recreational therapy, aromatherapy, mirror therapy, pet therapy, and plant therapy) b acupuncture/acupressure b energy therapies (continued) vol. no. may herndon et al. table continued b biofeedback and virtual reality b mindfulness meditation b spinal cord stimulator/deep brain stimulators � nonpain symptoms b gastrointestinal � constipation � nausea and vomiting � diarrhea � bowel obstruction � ascites � oral mucositis � hiccups � anorexia and cachexia b respiratory � dyspnea � secretions � aspiration/swallowing disorders � upper respiratory infections � cough b central nervous system/neuropsychiatric � anxiety � depression � delirium/agitation � insomnia � fatigue � dementia � schizophrenia/mental illness � seizure management � managing comorbid conditions at eol b cardiovascular (heart failure, hypertension, and hyperlipidemia) b pulmonary (chronic obstructive pulmonary disease, asthma, and chronic bronchitis) b endocrine/metabolic (diabetes mellitus, thyroid disorders, and hypercalcemia) b infectious disease (hiv/aids and appropriateness of antimicrobial therapy) b changing goals of care b feeding tubes � ethics/therapeutic decision making b goals of care and eol decisions (including assessment of decision-making capacity) b quality of life and futility b withholding vs. withdrawing b sedation for refractory symptoms b how to stop therapies b ventilator withdrawal b implantable cardiac devices b do not resuscitate/advance directives b caring for the caregiver b compassion fatigue � death rituals b cultural considerations b anticipatory grief b grieving b complicated grief (sudden infant death syndrome, suicide, and so forth) b funeralization/funeral home b bereavement b forensics � ppc emergencies b spinal cord compression b superior vena cava syndrome b hypercalemia b opioid intoxication b tumor lysis syndrome b syndrome of inappropriate antidiuretic hormone secretion b hemorrhage/disseminated intravascular coagulopathy vol. no. may pain and palliative care pharmacy practice community pharmacy experiences. here, ppc competencies may be uniquely suited to regu- latory and reporting issues, although other competencies are certainly achievable. appes are offered during the end of the pharmacy curriculum and designed to allow the student table consensus recommendations for time commitment and content for ppc instruction within required coursework in pharmacy professional degree programs time allocationdtotal six, -minute lecture equivalents ( minutes) time allocationdcontent introduction and overviewd definition of pain and palliative cared physiological issuesd (previously covered in earlier coursework) pain and symptom assessment and managementd pharmacologic issuesd (previously covered in earlier coursework) nonpharmacological approaches to paind management of common pain etiologiesd management of common nonpain symptomsd analgesic dosing strategiesd pharmaceutical concernsd ethical/legal issuesd competency statements . introduction and overview ( minutes) . . pain as a public health problem . . epidemiology . . societal consequences . . economic impact . definition of pain and definition of palliative care ( minutes) . . international association for the study of pain nomenclature . . international association for hospice and palliative care nomenclature . . systems for classifying pain . . . relationships and difference between acute pain and chronic pain . . biologic significance of pain and survival value . . concept of total pain (i.e., physical, psychological, spiritual, and financial) . physiological issues ( minutes)dconcepts should be covered in earlier coursework . . review of pain pathways and physiology . . transmitters and modulators (peptides, catecholamines, and amino acids) . . differentiated opioid receptors . . . agonist, partial agonist, agonist-antagonist, and antagonist . . . effects of stimulation of opioid receptors . . . differential drug affinities for opioid receptor types . pain and symptom management ( minutes) . . measurement, quantification, and recording of pain and symptoms . . assessment of pain . . . symptom analysis . . . unidimensional and multidimensional tools . . . pain diaries . . screening tools for risk of or current drug abuse and diversion . . . opioid risk tool . . . screener and opioid assessment for patients with pain . . . current opioid misuse measure . . . diagnosis, intractability, risk, and efficacy score . pharmacological issues ( minutes)dconcepts should be covered in earlier coursework . . analgesics . . . nonopioid analgesics . . . nonsteroidal anti-inflammatory agents . . . opioids . . . co-analgesics . . . . antidepressants . . . . anticonvulsants . . . . systemic local anesthetics . . . . topical analgesics . . . . glucocorticoids . . . . bisphosphonates . . nonpain symptom management medications . . . antidepressants . . . anxiolytics . . . phenothiazines, phenothiazine derivatives, and butyrophenones . . . antihistamines . . . sedative-hypnotics . . . neurologic agents . . . stimulants . . . laxatives and bowel preparation (continued) vol. no. may herndon et al. table continued time allocationdtotal six, -minute lecture equivalents ( minutes) . . . antinausea medications . . . anticholinergic agents . nonpharmacotherapy approaches to pain ( minutes) . . physical therapy . . surgical intervention . . relaxation techniques and stress management . . operant conditioning . . hypnotherapy . . psychotherapy and cognitive behavioral therapy . . myofascial trigger point injections . . acupuncture and acupressure . . chiropractic manipulation . . aromatherapy . . radiation therapy . . palliative chemotherapy . management of common pain etiologies ( minutes) . . acute pain . . musculoskeletal pain . . headache pain . . neuropathic pain . . pain with advanced illness (e.g., cancer or hiv/aids) . management of common nonpain symptoms ( minutes) . . nausea and vomiting . . constipation . . dyspnea . . myoclonus . . pruritus . . respiratory secretions . . delirium . analgesic dosing strategies ( minutes) . . dosing in opioid-na€ıve patients . . dosage escalation and de-escalation . . impact of genetic variability on analgesic metabolism . . opioid conversion calculations . . time contingent vs. ‘‘as needed’’ dosing . . dose-stacking strategies . . clinical relevance of pharmacokinetic and pharmacodynamic parameters of individual analgesics . pharmaceutical concerns ( minutes) . . routes of administration . . . oral . . . parenteral . . . rectal . . . sublingual . . . nasal . . . buccal . . . transmucosal . . . percutaneous . . . subcutaneous . . . intramuscular . . . intravenous . . . neuroaxial including epidural and intrathecal . . role of local anesthetic nerve blocks, myofascial trigger point injections, and neurolytic blocks . . extemporaneous compounding of needed dosage forms not commercially available . . provision for legal and safe destruction of controlled substances and controlled drugs . ethical and legal issues ( minutes) . . concepts of opioid physical dependence, psychological dependence, tolerance, addiction, and pseudoaddiction . . identify transdisciplinary nature of hcps in pain management and palliative care (continued) vol. no. may pain and palliative care pharmacy practice table continued time allocationdtotal six, -minute lecture equivalents ( minutes) . . use of euthanasia, physician-assisted suicide, palliative sedation, and pain relief in terminally ill patients . . relevance of the controlled substances reporting act . . screening and handling of potentially fraudulent prescriptions . . recognizing and handling inappropriate health care beliefs (patients and families) and behaviors (practitioners) . . risk evaluation and mitigation strategies and similar country-specific programs . . neuropsychological effects of opioids and effects on driving . . placebo analgesics vol. no. may herndon et al. to use concepts learned during didactic and earlier experiential coursework. experiential education, much like the didactic component of the pharmacy program, may be difficult to integrate with required experiences on ppc because of the already heavy loads of required rotations and the lack of qualified learning sites or preceptors. the curricular working group provided recommendations on compe- tencies in ppc to be integrated in already required experiential rotations, as well as com- petencies and proposed activities for a phar- macy student on a ppc-specific elective rotation. these consensus recommendations are provided in appendices iii and iv, respec- tively (available at jpsmjournal.com). within the elective ppc experiential rotation, the working group recommends assessing the level of exposure to each of the content areas/competencies based on number of patients and level of discussion with the pre- ceptor. the working group notes that experi- ences will vary greatly with regard to opportunities on individual rotations. postgraduate training working group the pgt working group sought to reach consensus on recommended competencies, experiences, and standards as they relate to ppc in the various forms of formal postgra- duate education for pharmacists. the pgt working group identified pgy- pharmacy res- idencies, pgy- pharmacy residencies, and research fellowships as clinical pgt opportu- nities for pharmacists. although noted as post- graduate options for pharmacists, advanced degrees, including the master of science and doctor of philosophy, were not discussed. the working group reviewed current ashp pgy- and pgy- residency standards and model guidelines for research fellowships and reached consensus on recommendations for program consideration when assessing learning experiences and required program content. currently, pgy- residency standards do not identify specific therapeutic areas as required or elective per se; however, they identify gen- eral required and elective objectives as they re- late to the general practice of pharmacy. as pgy- residencies are considered advanced training for the generalist pharmacists, fre- quently these programs attempt to offer the resident an abundance of experiences vs. fo- cusing on a particular area. programs do exist that emphasize a distinct area of practice, al- though the accreditation standards seek to limit overexposure to any specific area of prac- tice, group of patients, or individual preceptor. the working group provides consensus recom- mendations for consideration by residency program directors of pgy- residencies of competencies in ppc in appendix v (available at jpsmjournal.com). whereas the accreditation standards for spe- cialty pgy- residencies are similar in format, specific outcomes, goals, and objectives are stated for each of the accredited pgy- resi- dencies. for each of the pgy- patient care specialty residencies (ambulatory care, cardiol- ogy, critical care, geriatrics, infectious diseases, oncology, pediatrics, pharmacotherapy, psychi- atry, and solid organ transplant) other than ppc pgy- residencies, the working group rec- ommends the utilization of the competencies provided for pgy- residencies provided in appendix v. the working group realizes that all the specialty learning environments may not lend themselves to each of the competen- cies listed; however, these recommendations http://jpsmjournal.com http://jpsmjournal.com vol. no. may pain and palliative care pharmacy practice should provide a framework from which to perform self-assessment on the individual resi- dency programs when desired outcomes to be achieved are evaluated by the pharmacy resident. the working group additionally reviewed the outcomes, goals, and objectives stated for ashp accredited pgy- residencies in ppc. the working group, through consensus, sup- ports the standards, outcomes, goals, and ob- jectives as provided by ashp. with regard to research fellowship training of pharmacists in ppc, the working group felt that individual fellowship programs were too variable to provide competency recom- mendations and supports the american col- lege of clinical pharmacy guidelines for clinical research fellowship training pro- grams. although training in research method- ology may be the primary focus of the formal pharmacy fellowship program, the working group recommends incorporation of the previ- ously identified competencies in appendix v for fellowship programs emphasizing clinical, basic, and translational research in ppc. formal pgt opportunities in ppc for phar- macists are considerably lacking. the working group additionally recommends increased in- stitutional commitment to expanding oppor- tunities in formal ppc pgt for pharmacists. certificate programming working groups one of the goals of the summit was the cre- ation of a framework for a certificate ce pro- gram for pharmacists in ppc with utility across practice settings and specialties. be- cause of the differences in levels of training and practices of currently licensed pharma- cists, a conceptual design was envisioned that would provide three levels of educational pro- gramming for pharmacists. this would include programming for most licensed pharmacists and would be represented by what is consid- ered core content or basic minimum compe- tencies in ppc that all pharmacists, regardless of level of training or practice setting, should achieve. the second phase or component of the proposed certificate program would be di- rected to those pharmacists who are not neces- sarily ppc specialists but who devote a reasonable amount of time to ppc within their individual practice setting (i.e., geriatrics, critical care, specialty compounding, and institutional). in addition to the core content previously described, these site- or practice- specific modules would provide the practicing pharmacist with the tools necessary to provide quality patient care in their respective setting. the compilation of the core content and all the site- or practice-specific modules would comprise a ‘‘train-the-trainer’’ program. those pharmacists considered therapeutic experts in the field of ppc completing the ‘‘train- the-trainer’’ program would then provide the individual core and site- or practice-specific educational programs. as a result of the amount of content and workload of such an ambitious endeavor, this charge was split between two working groups. one working group focused on the core com- petencies required of all practicing pharma- cists with respect to ppc regardless of practice setting (certificate programming working groupdcore). the other working group sought to identify and collate site- and practice-dependent variations in need with re- spect to ppc competencies. certificate programming working groupdcore. this working group sought to develop a framework of content in which to consider minimum competencies necessary for all prac- ticing pharmacists. the objectives were to ) develop a core curriculum on ppc to be of- fered to pharmacists, ) consider the best model in which to provide the education (i.e., epec, elnec, unipacs, and so forth). e although funding and logistics of dissemination of the course were discussed, the working group tabled this discussion to fo- cus on the outline for the course. the working group approached the task of content identi- fication in a rather novel manner: first, indi- vidual competencies were identified and discussed. once these minimum core compe- tencies were agreed on, they were further grouped into larger concepts to begin building the actual outline of the course. ideally, the consensus recommendations provided by this working group (table ) will be used to develop the primary ppc course that may be offered as ce regardless of prac- tice setting. although this document may look similar to the competencies identified within the professional degree curriculum table consensus recommendations on core competencies for practicing pharmacists and their associated groupings within a certificate program for ce . epidemiology of pain . . populations (neonates, pediatrics, children, adolescents, adults, and geriatrics) . . morbidity (absenteeism and presenteeism) . . cost . . treatment . . prevalence of drug abuse . . treatment . . types of pain (malignant, neuropathic, bone, somatic, and visceral) . pain taxonomy . . generators . . . neuropathic . . . nociceptive . . time and duration . . . acute (injury, postoperative) . . . chronic (maintenance, breakthrough pain) . . . malignant pain . . . terminal and eol . . settings . . . hospice . . . palliative . . . outpatient . . . inpatient . . . institutions . . . long-term care facilities . . . assisted living facilities . pathophysiology of pain . . acute, chronic, malignant, and neuropathic . . tolerance . . hyperalgesia and allodynia . . dying process . . addiction, pseudoaddiction, and dependence . . consequences of untreated or undertreated pain . . withdrawal symptoms . pain and symptom assessment . . opioid use and symptom management at eol . . opioid tolerance . . pain vs. suffering . . hyperalgesia . . cultural sensitivity . . specific assessment tools . . rating scales . . compliance and adherence assessment . . assessing special populations . clinical pharmacology . . constipation . . bisphosphonates . . palliative sedation . . opioid conversions . . opioid rotations . . treatment of side effects . . addiction and dependence . . drug interactions . . withdrawal symptoms . . opioid-induced hyperalgesia . . routes of administration . . allergies and intolerance . . opioid tolerance . . incident and breakthrough pain . . adjuvant/co-analgesics . . implantable technology . . patient-controlled analgesia . . pharmacokinetics of analgesics and co-analgesics . . dosing (continued) vol. no. may herndon et al. table continued . pharmacotherapy . . evidence-based medicine and practice guidelines . . practice management . . interventional therapy . alternative pain management strategies . . interventional/surgical treatment . . . radiation therapy . . . nerve blocks . . . trigger injections . . . implantable pumps . . . intrathecal and epidural administration . . acupuncture . . transcutaneous electrical nerve stimulations . . behavior modification/cognitive behavioral therapy . . guided imagery . . hypnosis . . massage . practice/patient management/treatment care plan . . safe storage and utilization . . compounding of meds in eol care . . cost . . disposal . . prescription monitoring programs . . recommendations for staying current following educational programming . . dispensing and regulatory issues in ppc . . collaborative agreements and medication therapy management . . drug availability . . titration . . transitions of care and patient care settings . . goals of care . special considerations and populations . . pediatrics . . geriatrics . . neonates . . noncommunicative/demential patients . . altered mental status . . compounded meds in eol care . . renal and hepatic impairment . . palliative sedation . . cultural awareness . . substance abuse/addiction . . pregnancy . . adolescents . . adults . . routes of administration . communication . . interdisciplinary communication . . patient education . . difficult patients and families . . cultural sensitivity . . grief training . overcoming barriers . . combine communications into topic as one approach (see above) . . pharmacist attitudes toward opioids and pain . . misconceptions . . . patient concerns (addiction, side effects, overdosing, and so forth) . . . provider concerns (addiction, side effects, overdosing, and regulatory oversight) . . access to care and resources . . system barriers (financial, time, and availability of resources) . . difficult patients or families . . disparities in care . . cost . . reimbursement for services . . cultural sensitivity and awareness (continued) vol. no. may pain and palliative care pharmacy practice table continued . ethical and regulatory issues in ppc . . common terms (malfeasance and beneficence) . . palliative sedation . . euthanasia . . physician-assisted suicide . . pain management by proxy . . addiction . . withdrawal of care . . advance directives and living wills . . justification of pharmacist role . . patient bill of rights pertaining to ppc . . counseling on risk vs. benefit of medications (i.e., methadone) . . family conference on goals of care . . medication safety . . compounding and off-label use of high risk pain medications . . dispensing and regulatory laws . . . controlled substances acts . . . risk evaluation and mitigation strategies . . pain management in vulnerable populations (i.e., noncommunicative) . . disposal or destruction of medications . . drug diversion and reporting . . risk management . comorbid diseases and symptom clusters . treatment of symptoms at eol . . constipation . . malignant pain . . palliative sedation . . terminal restlessness . . dyspnea . . terminal secretions . . dying process . . hiccups . . opioids at the eol . . delirium . . pain vs. suffering . . anxiety and depression . . communication . . fatigue . . routes of administration (compounding, patient-controlled analgesia) . . cachexia and anorexia . . nausea and vomiting . program administration . . cost (medications and services) . . outcomes and goals . . quality-improvement processes . . digital tools . . justification for pharmacist role in ppc . . reimbursement for services . . medication therapy management vol. no. may herndon et al. recommendations, these content areas will be expanded to create a self-contained ce offering. certificate programming working groupdsite de- pendent. this working group was charged with identifying competencies that may be practice specific (i.e., specialty infusion, com- pounding pharmacy, and so forth) as they re- late to ppc. the first goal was to identify the individual practice settings to consider and how groupings of related practice settings may occur. the first practice site grouping identified by the working group was inpatient oriented. this group included hospitals of various sizes and academic affiliations, outpa- tient surgery centers, specialty clinics (such as dialysis or pain management), oncology cen- ters, and infusion centers. the second practice setting grouping was ambulatory or primary care. the third practice setting grouping iden- tified was community, although this set of prac- tice sites may have an incredibly diverse set of skills required by the pharmacist depending vol. no. may pain and palliative care pharmacy practice on the type of community pharmacy. examples may include high volume chains, independent pharmacies, compounding pharmacies, and those pharmacies providing auxiliary services to small long-term care facilities. the fourth practice setting group was labeled managed care and may include sites such as dedicated long-term care facility pharmacies, pharmacies or pharmacists working directly within hos- pices, and those pharmacists working within managed care companies as pharmacy benefit managers. the methodology of this working group was similar to that of the core content working group. major competencies as they relate to ppc were identified and then grouped within practice setting-specific categories. competen- cies that were felt to be necessary by all pharmacists, regardless of practice setting, were provided for consideration and cross- referencedbythecorecontentworkinggroup. those competency statements that were left and assigned to particular practice settings would then be provided as recommendations for the creation of site-dependent, add-on modules to the core course educational programming. thus, a pharmacist seeking additional training or education in ppc who works in a community pharmacy could participate in the ce program comprising the core program and the site- dependent module. those seeking a more global expertise in ppc could complete the core programming and all the site-dependent modules and then may be considered to provide the ce programs to others (a train-the-trainer model). practice settings and their associated competencies are provided in appendix vi (available at jpsmjournal.com). credentialing working group the credentialing working group was charged with the goal of evaluating currently available credentialing opportunities for phar- macists in ppc and to make consensus re- commendations regarding the feasibility or necessity of seeking independent board certifi- cation or credentialing within the profession. during the course of discussion, numerous concerns arose, including number of phar- macists who may avail themselves of such cre- dentialing, acceptance of a pharmacy ppc credential by nonpharmacy professions, costs associated with developing a certification examination, and potential benefits of becom- ing credentialed. currently, two credentialing examinations are available for pharmacists with an interest or expertise in ppc. the first is offered by the aapm to any hcp with a terminal degree. if the individual achieves a passing score, he or she is designated a diplomate of the aapm. those without a terminal degree may sit for the examination and achieve the credential fel- low of the aapm. the second credential is offered by the aspe and, if the individual achieves a passing score, he or she earns the des- ignation of a certified pain educator. this cre- dential is available to any candidate meeting the testing requirements and demonstrating a commitment to pain management through ce credits. both the aforementioned creden- tialsareprimarilyfocused onpainmanagement, with little palliative care emphasis. neither is recognized by the joint commission of phar- macy practice (jcpp) as a board certification. the working group identified several organi- zations that currently offer board certification for pain and/or palliative medicine for other health care professions. the group discussed whether pharmacist-specific ppc credentialing would be recognized outside the profession and the need to have other professions either involved or directing the creation of a phar- macist-specific board certification process to ensure interdisciplinary credibility. those or- ganizations directly discussed included the american board of anesthesiology and the american academy of hospice and palliative medicine, both of which have physician- specific board certification processes. the working group additionally reviewed the application process for consideration of specialty board examination creation through the bps. this organization is considered the official credentialing organization for the pro- fession of pharmacy by the jcpp. after the identification of a demand for such board ex- amination, the bps requires a petition for con- sideration from pharmacists interested in the examination and submission from a sponsor- ing organization. once a needs assessment and delineation study is performed, the bps may elect to allow creation of the examination. although beyond the scope of this summary, the specific steps are outlined on the bps web- site (www.bps.org). the bps also offers a status http://jpsmjournal.com http://www.bps.org vol. no. may herndon et al. of added qualifications, which may be added to its current general practice credential, phar- macotherapy. this option also was discussed by the working group but was found to fall short of serving the purpose of expertise recognition and may be difficult to implement; currently, there are at least two bps specialties that would be applicable (pharmacotherapy and onco- logy) but the added qualifications are only of- fered for the pharmacotherapy certification. after consideration of these avenues for spe- cialty recognition within the profession of pharmacy for ppc, the working group reached consensus on the following recommendations: ) submit a petition for specialty recognition through the bps for ppc, ) identify a petition- ing organization or organizations to colla- borate on the development of the board examination, and ) in the event that a spon- soring organization is not found, the deve- lopment of a profession-specific organization for those pharmacists interested in and practic- ing ppc. summary the summit hosted participants within six working groups to identify processes by which to improve the education of pharmacists in ppc. the opportunities available for phar- macist involvement in the care of these pa- tients are plentiful, and the time is now for our profession to take the next steps in increas- ing pharmacy involvement in the interdisci- plinary care of patients in pain and at the eol. as pharmacists strive to play larger roles within the health care team in ppc, the avail- ability of learning experiences both within and following professional degree programs is paramount. with the consensus recommen- dations reached at this summit, we have an op- portunity to vastly improve our position on the ppc team and greatly affect the care delivered to these patients. summary of recommendations . curricular ppc competencies for profes- sional degree programs in pharmacy should consider all coursework, including required didactic, elective didactic, re- quired experiential, and elective or selec- tive experiential education. consensus recommendations on ppc competencies, model syllabi for dedicated courses, and recommended curricular content are provided. . to effect change in pharmacy profes- sional degree programs, collaboration must be sought from degree program accreditation bodies, state and national licensing boards, and professional organi- zations representing pharmacy educators. consensus recommendations for pursu- ing these opportunities are outlined. . pharmacists seeking formal postgraduate clinical training outside a ppc specialty require a core understanding of this prac- tice area. consensus recommendations on general competencies for these pro- grams are presented. . pharmacists providing patient care in all practice settings require a core under- standing of ppc. consensus recommen- dations on basic minimum competencies for practicing pharmacists in ppc are pre- sented as a framework for a ce certificate program. . unique practice settings often require specialized skills as they relate to ppc. consensus recommendations outlining the individual practice areas and subse- quent skill sets are provided. . recognition of expertise for pharmacists with advanced understanding of ppc is paramount from the perspective of the patient, the payer, the employer, and the health care team. consensus recommen- dations are provided on the development and provision of such recognition. conclusion pharmacists are an integral part of the ppc team. by addressing educational barriers and opportunities at every step of a pharmacist’s pro- fessional continuum (pregraduate, postgradu- ate, licensed, and specialized practice), the attitudes, skills, and knowledge of ppc will be improved. the consensus recommendations provided as a result of these proceedings pro- vide a framework with which to strengthen the profession’s ability to assist in the provision of ppc care to patients. recommendations in their vol. no. may pain and palliative care pharmacy practice entiretyandeditablemodelsyllabi maybedown- loaded at www.pharmacypainsummit.com. disclosures and acknowledgments funding for the strategic planning summit for pain and palliative care pharmacy was pro- vided by the mayday fund. dr. strassels has received research funding, honoraria, or con- sultant fees from cadence, endo, ortho/ mcneil janssen, meda, and astellas. all other authors declare no real or potential conflicts of interest. the authors wish to express their gratitude to ms. donna 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angst f, verra ml, lehmann s, brioschi r, aeschlimann a. clinical effectiveness of an interdis- ciplinary pain management programme compared with standard inpatient rehabilitation in chronic pain: a naturalistic, prospective controlled cohort study. j rehabil med ; : e . . kitahara m, kojima kk, ohmura a. efficacy of in- terdisciplinary treatment for chronic nonmalignant pain patients in japan. clin j pain ; : e . . morrison rs, flanagan s, fischberg d, cintron a, siu al. a novel interdisciplinary analge- sic program reduces pain and improves function in older adults after orthopedic surgery. j am geriatr soc ; : e . . samwel hj, kraaimaat fw, crul bj, van dongen rd, evers aw. multidisciplinary allocation of chronic pain treatment: effects and cognitive- behavioural predictors of outcome. br j health psy- chol ; (pt ): e . http://www.pharmacypainsummit.com http://www.cdc.gov/nchs/data/hus/hus .pdf http://www.cdc.gov/nchs/data/hus/hus .pdf vol. no. may herndon et al. . stanos s, houle tt. multidisciplinary and inter- disciplinary management of chronic pain. phys med rehabil clin n am ; : e . . reisfield g, paulian g, merlo l, bertholf r, wilson g. opioid prescription underfilling among retail pharmacies. pain med ; : e . . holtsman m. commentary on dr. heit and dr. gilson’s letter to the drug enforcement administra- tion. does your pharmacist interpret a new federal standard in a manner that can make your patient suffer in pain? pain med ; : . . emanuel ll, ferris fd, von gunten cf. epec. education for physicians on end-of-life care. am j hosp palliat care ; : . . sherman dw, matzo ml, pitorak e, ferrell br, malloy p. preparation and care at the time of death: content of the elnec curriculum and teaching strategies. j nurses staff dev ; : e . . otis-green s, ferrell b, spolum m, et al. an overview of the ace project-advocating for clinical excellence: transdisciplinary palliative care educa- tion. j cancer educ ; : e . appendix i participants of the strategic planning summit for pain and palliative care pharmacy amy fan, angela riley, arthur lipman, bernard fischer, chris herndon, christine spellman, chris- tine swyres, craig phernetto, cynthia johnston, darlene hernandez, deanna douglass, deborah ki- ley, douglas nee, ed rainville, ellyn schreiner, erin timpe, ernest dole, forrest smith, goldie peters, greg blaies, halley connor, james ray, jane pruemer, jeanna miller, jennifer rosselli, jennifer strickland, josephine hawkins, julie golembiewski, julie kissack, justin kullgren, kathryn hahn, kelly gable, kevin bain, lea price, leonette kemp, lily lau, lora mcguire, mary mihalyo, mckenzie fer- guson, meri hix, michael rouse, michele matthews, mitchell nazario, paul hutson, phyllis grauer, r. timothy tobin, rajan radhakaris, rebecca rengo, robert kronenberg, rosene pirello, terri poirier, tracy harvey, william wuller vol. no. may .e pain and palliative care pharmacy practice appendix ii stakeholder organizations identified for partnership by the assessment working group individual schools of pharmacy national association of boards of pharmacy individual state boards of pharmacy accreditation council for pharmacy education american association of colleges of pharmacy centers for medicare and medicaid services the joint commission (formerly joint commission on accreditation of healthcare organizations) american pharmacists association american society of health-system pharmacists national community pharmacists association american society of consultant pharmacists academy of managed care pharmacy american college of clinical pharmacy federation of state medical boards american college of apothecaries student affairs administrators in higher education joint commission of pharmacy practitioners major inter-professional groups including nursing, medicine, social work major multi-professional groups including pain management, palliative care, and hospice council on credentialing in pharmacy national institute for standards in pharmacist credentialing specific large employers (i.e., u.s. department of veteran’s affairs, kaiser permanente) patient advocacy groups (i.e., american pain foundation, american chronic pain association) .e vol. no. may herndon et al. appendix iii consensus recommendations on proposed required competencies to be integrated and evaluated within required introductory pharmacy practice experiences and advanced pharmacy practice experiences (note: the curriculum working group recognizes that preceptors may need addi- tional training.) � interview a patient about a pain report (or symptom). � participate in a family meeting or discussion with patient about goal-setting regarding pain and/or symptom management. � program a patient-controlled analgesia (pca) pump. � counsel a patient on use of a nonprescription analgesic. � counsel a patient on use of long-acting opioid and rescue opioid. � perform an opioid conversion calculation: b from one route of administration to another route (same opioid) b from one opioid to another opioid b combination of changing drug and route of administration � counsel a patient on how to manage adverse effects associated with opioid therapy. vol. no. may .e pain and palliative care pharmacy practice recommended books/reading � pain and palliative care chapter within given pharmacy therapeutics textbook � pain and/or palliative care pocket handbook that is inexpensive and free from commercial bias b principles of analgesic use in the treatment of acute and cancer pain (american pain society) b the massachusetts general hospital handbook of pain management b pain.edu handbook b others � books on insight and philosophy of pain and palliative care b dying well (ira byock) b the truth about chronic pain (arthur rosenfeld) b american book of living and dying (richard gross) b how we die (sherman nuland) b the fall of freddie the leaf (leo f. buscaglia) � fast facts and concepts (end of life/palliative education resource center) recommended teaching activities � writing a condolence letter � completing a journal � visit to a funeral home � calculation of equianalgesic doses of opioids for oral, intravenous, epidural, and intrathecal administration � patient care rounds/team meeting � attend morbidity and mortality (m&m) rounds, tumor board, grand rounds, ethics, departmental meetings, pharmacy and therapeutics committee, etc. � home hospice visits with various disciplines. � drug information questions � project: newsletter, inservice, participate in research, journal club � patient write-ups: consult notes, problem-oriented notes � competency/discussion topics in palliative care � describe role of all team members, pharmacist role on team � exercises in grief, bereavement and funeralization � observe/participate in discussion of goal-setting with patient/family recommended didactic content . introduction to pain management and palliative care . interdisciplinary nature of pain management and palliative care (physician, nurse, social worker, pharmacist, clergy, psychology, music / art counselor, massage therapy, etc.) . review of physiology of pain and pharmacology of analgesics, co-analgesics and non-pain symptom medications . loss and dying . complex pain syndromes b pre-treatment of acute pain (pre-emptive analgesia) b complicated post-operative or traumatic pain b temporomandibular joint pain b metastatic bone pain b phantom limb and amputation stump pain b sympathetically maintained pain (complex regional pain syndrome) b pain of vascular origin (pad) b pain in hematological disease (e.g., sickle cell anemia, hemophilia) b wound pain (including fungating wounds, care of fistulas) b mucositis pain b burn pain b self-treated pain conditions b failed back pain b pain in co-morbid conditions (depression, anxiety, schizophrenia, etc.) . pain and symptom management in other disease states b parkinson’s disease b ms/als/ other neurologic b post-cva b chf b hiv b copd (continued) appendix iv model syllabus for an elective pain and palliative care advanced pharmacy practice experience (appe) within a pharmacy professional degree program .e vol. no. may herndon et al. continued . pharmaceutical issues/drug dosing b opioids b ketamine b lidocaine b topical analgesics b cannabinoids b psychostimulants b altering dosage formulations b relevance of drug allergy history . alternatives interventions b herbals b music therapy b memory book / journaling b dealing with spiritual pain b cognitive behavioral therapy b alternative therapy (art therapy, recreational therapy, aromatherapy, mirror therapy, pet therapy, plant therapy) b acupuncture/acupressure b energy therapies b biofeedback and virtual reality b mindfulness meditation b spinal cord stimulator/deep brain stimulators . non-pain symptoms b gastrointestinal � constipation � nausea and vomiting � diarrhea � bowel obstruction � ascites � oral mucositis � hiccups � anorexia and cachexia b respiratory � dyspnea � secretions � aspiration/swallowing disorders � upper respiratory infections � cough b cns/neuropsych � anxiety � depression � delirium/agitation � insomnia � fatigue � dementia � schizophrenia/mental illness � seizure management . managing co-morbid conditions at end of life b cardiovascular (heart failure, hypertension, hyperlipidemia) b pulmonary (chronic obstructive pulmonary disease, asthma, chronic bronchitis) b endocrine/metabolic (diabetes mellitus, thyroid disorders, hypercalcemia) b infectious disease (hiv / aids, appropriateness of antimicrobial therapy) b changing goals of care b feeding tubes . ethics/therapeutic decision making b goals of care and end of life decisions (including assessment of decision making capacity) b quality of life and futility b withholding vs. withdrawing b sedation for refractory symptoms b how to stop therapies b ventilator withdrawal b implantable cardiac devices b dnr/advance directives b caring for the caregiver b compassion fatigue (continued) vol. no. may .e pain and palliative care pharmacy practice continued . death rituals b cultural considerations b anticipatory grief b grieving b complicated grief (sids, suicide, etc.) b funeralization/funeral home b bereavement b forensics b death of pets . pain and palliative care emergencies b spinal cord compression b superior vena cava syndrome b hypercalemia b opioid intoxication b tumor lysis syndrome b syndrome of inappropriate antidiuretic hormone secretion b hemorrhage/disseminated intravascular coagulopathy .e vol. no. may herndon et al. appendix v consensus recommendations for competencies on pain and palliative care in postgraduate year and postgraduate year (not ppc specialty) residency programs . understand the pathophysiology of acute and chronic pain including pain transmission pathways, pain etiologies, and consequences of uncontrolled pain. . understand the prevalence of chronic pain and its impact on psychosocial, economic, and other comorbidities. . design and manage optimal therapeutic plans for patients with acute and/or chronic pain. . design and manage appropriate therapeutic plans for the palliative care of patients (e.g., nausea, pru- ritis, constipation, dyspnea). . understand available non-pharmacological, or interventional, evidence-based symptom manage- ment strategies (e.g., peripheral nerve blocks, myofascial trigger point injections, transcutaneous electrical nerve stimulation (tens), relaxation therapy, occupational therapy, massage, acupunc- ture, physical therapy). . understand the unique aspects of providing evidence-based, patient-centered medication therapy management within multidisciplinary teams for pain and palliative care patients. . design cost-effective, evidence-based therapeutic plans to improve outcomes for patients with pain and/or palliative care needs. . appropriately counsel patients on therapeutic regimens used for the management of pain and other associated symptoms. . differentiate behaviors associated with physiological dependence, tolerance, pseudoaddiction, and substance dependence (addiction). . identify risk factors and behaviors associated with substance dependence and develop strategies for effectively managing such patients. . understand how to effectively use current evidence-based practice guidelines in the management of patients with painful conditions. . demonstrate how to assess pain and other symptoms using validated assessment tools in all patient populations (e.g. adult, geriatric, pediatric, and cognitively impaired). . appropriately document and communicate pain and symptom management treatment recommendations. . understand the appropriate indications for various administration routes of analgesics (e.g., parenteral opioids on a regular schedule and prn, opioids via patient-controlled analgesia [pca], epidural and intra- thecal opioids, and oral and parenteral nsaids). . determine safe and effective patient specific equianalgesic opioid dosing strategies. . determine appropriate use of adjuvant analgesics (e.g., tricyclic antidepressants, antiepileptic, non- steroidal anti-inflammatory agents, acetaminophen). . recognize and manage opioid withdrawal and overdose. . understand the current legal and regulatory issues surrounding the safe use and proper disposal of opioids and other analgesics. . obtain comprehensive medication histories from patients experiencing pain or needing palliative care, which address medication use, adverse reactions, compliance, patients’ goals and beliefs about medications, and a needs assessment for patient education and counseling in order to facilitate the development of a therapeutic regimen. . describe strategies for making optimal choices for alternative medications when a drug shortage arises. . educate patients, caregivers, and/or health care providers on appropriate medication therapy man- agement for pain and palliative care patients. vol. no. may .e pain and palliative care pharmacy practice esthesia dministr rant dos lgesia (p anestheti ounding hetics taff diver xone tre ion ctal form plex pa h implan nce / d ain and ain and rogram hospital treat intr ement epatic d anesthe pital dical sur on, skille lled in tr appendix vi consensus recommendations on site: dependent pain and palliative care competencies for pharmacists .e vol. no. may herndon et al. inpatient � induction and maintenance of an � intravenous analgesia b patient-controlled analgesia b bolus dosing b conversion between routes of a b opioid na€ıve versus opioid tole � intraspinal analgesia b patient-controlled epidural ana b intrathecal administration b epidural with or without local b admixture processes and comp � peripheral infusion of local anest � nerve blocks or ablation � implantable devices � comorbid substance abuse and s � treatment of overdose using nalo � unusual routes of administration b intracerebroventricular b continuous subcutaneous infus b rectal administration of non-re � urine and serum drug screening b interpretation b false positives and negatives b chain of custody � management of patients with com b sickle cell disease b cancer pain b acute treatment of patients wit b patients with high opioid tolera � pre-operative and post-operative p b pre-admission clinic b pre-emptive analgesia b anticipation of post-operative p � emergent headaches � dose escalations and wean � opioid rotation � inpatient palliative care b multidisciplinary care b role of the pharmacist b reimbursement considerations b evaluation of data to support p � actively dying persons within the � terminal extubation and sedation � drug-induced sedation/coma to b evaluation of patients b intensive care unit b trauma unit � special populations b pediatric inpatient pain manag b neonatal wean from opioids b geriatrics b dialysis, anephric, and severe h b procedural pain � complex documented opioid and b desensitization protocols � transitions of care within the hos b post-anesthesia care unit to me b discharge to home, rehabilitati � acute treatment of patients enro b alcohol ation of opioids ing cea) cs for these routes sion identification atment guidelines ulations in syndromes table devices ose requirements symptom management symptoms actable pain isease tic allergies gical floor d nursing facility, long term care facility, hospice eatment programs (continued) continued b opioid / heroin (methadone, buprenorphine � continuity of care and discharge planning community � continuity of care b patient care settings and common drugs b formulary guidelines and therapeutic interchange b drug shortages � evaluation of drug allergies versus hypersensitivities versus preferences � pain contracts and agreements b bilateral versus trilateral b state specific requirements � risk evaluation and mitigation strategies � federation of state medical boards responsible opioid prescribing � universal precautions � prescription monitoring programs and their evaluation � death with dignity/conscience clauses � internet pharmacies � combination analgesics b appropriate use and recommendations for over the counter analgesics and herbals b acetaminophen doses and recommendations based on special populations � herbal/complementary pain and palliative care � adverse events and reporting � common drug interactions with pain and palliative care medications � prescription assistance programs available b industry-based b community-based � medication therapy management � toxicology and urine drug screening evaluation � addiction medicine and regulatory b suboxone b subutex b methadone � risk management b identifying problematic behaviors or fraudulent prescriptions b vigil program by brushwood � evaluation of high/concerning opioid doses � physician e pharmacist relationship building around ppc patients � assessment and referral of ppc patients � partial dispensing and state and federal controlled substances acts � compounding products and dosage forms as they relate to ppc � evaluation of methadone and buprenorphine as analgesics � rapid acting agents and safe prescribing evaluation � evaluation and recommendation regarding differences in generic analgesics (i.e., transdermal fentanyl) ambulatory and primary care � treatment agreements b fishman approach b enforcement or reaction to deviations b tools proposed by fsmb � responsible opioid prescribing/universal precautions � when to seek referral � interdisciplinary communication within and between sites � consistency of practice � models of care as a provider extender b medication reconciliation b interval visits and clinic appointments based on state specific requirements b risk assessment and refill approval � complementary / herbal medication recommendations managed care � legal requirements and partial dispensing � alternative routes of administration � return and destruction of discontinued medication or postmortem � terminal sedation, extubation, and medication/therapy weans � centers for medicare and medicaid services conditions of participation � hospice per diem issues � assessment of pain and symptoms � undertreatment and lack of treatment bias and consequences � symptom clusters � anecdotal or limited evidence base therapies (continued) vol. no. may .e pain and palliative care pharmacy practice continued b frozen vaseline balls b rectal administration of non-rectal formulations � evaluation of medications with limited short term benefit or narrow therapeutic index � patient oriented goals of therapy � actively dying patients b agitation b secretions b family dynamics � interdisciplinary team issues � physician-assisted suicide, euthanasia � palliative care symptom management not at end of life � insurance concerns � hospice settings and differences b nursing home-based b home-based b hospital- or inpatient-based � emergency boxes for hospice patients � pain at end of life b spiritual pain b effectiveness evaluation of analgesics and other symptoms medications b delirium, dementia, non-communicative, or uncooperative .e vol. no. may herndon et al. 	consensus recommendations from the strategic planning summit for pain and palliative care pharmacy practice 	introduction 	continuum of education for pharmacists 	the summit 	working group recommendations 	assessment working group 	curricular working group 	postgraduate training working group 	certificate programming working groups 	certificate programming working group—core 	certificate programming working group—site dependent 	credentialing working group 	summary 	summary of recommendations 	conclusion 	disclosures and acknowledgments 	references 	appendix i. participants of the strategic planning summit for pain and palliative care pharmacy 	appendix ii. stakeholder organizations identified for partnership by the assessment working group 	appendix iii. consensus recommendations on proposed required competencies to be integrated and evaluated within required introductory pha ... 	appendix iv. model syllabus for an elective pain and palliative care advanced pharmacy practice experience (appe) within a pharmacy prof ... 	appendix v. consensus recommendations for competencies on pain and palliative care in postgraduate year and postgraduate year (not ... 	appendix vi. consensus recommendations on site: dependent pain and palliative care competencies for pharmacists factors affecting embryo recovery rate, quality, and diameter in andalusian donkey jennies animals article factors affecting embryo recovery rate, quality, and diameter in andalusian donkey jennies j. dorado ,* , m. bottrel , i. ortiz , m. díaz-jiménez , b. pereira , c. consuegra , j. j. carrasco , v. gómez-arrones , a. domingo and m. hidalgo veterinary reproduction group, department of medicine and animal surgery, faculty of veterinary medicine, university of cordoba, cordoba, spain; ma.bottrel@gmail.com (m.b.); isabel.ortiz.vet@gmail.com (i.o.); mariadijim@gmail.com (m.d.-j.); blasypereiraaguilar@gmail.com (b.p.); mtc vet@gmail.com (c.c.); mhidalgo@uco.es (m.h.) equine reproduction center, centro de selección y reproducción animal, (censyra-extremadura government), badajoz, spain; juanjesus.carrasco@juntaex.es (j.j.c.); vanearrones@gmail.com (v.g.-a.); adomingomontes@gmail.com (a.d.) * correspondence: jdorado@uco.es; tel.: + - - - received: september ; accepted: october ; published: october ���������� ������� simple summary: embryo transfer has been successfully used for the conservation of equine endangered species, but a number of factors may affect the outcome of these techniques in mares. however, only a few studies have evaluated these factors in donkeys. the present study was conducted to determine which factors affect the recovery rate, morphological quality, and diameter in embryos from andalusian donkey jennies. according to our results, the factors affecting embryo recovery rate were donor jenny, donor age, successive cycle within donor, number of flushings, and jack. day of flushing and number of flushings had an effect on embryo diameter, whereas donor jenny and day of flushing had an effect on embryo quality. the knowledge of these factors is crucial to achieve a higher efficiency of embryo transfer in endangered donkey breeds. abstract: embryo transfer and the vitrification of embryos could be used for the conservation and recovery of endangered donkey breeds. it is important to develop techniques that optimize recovery rates and the cryotolerance of donkey embryos. this study evaluates factors affecting the recovery rate, quality, and diameter of embryos obtained from donor jennies as a starting point for the use of vitrification and embryo transfer in the conservation of the andalusian donkey. a total of embryos were recovered out of estrous cycles ( . %). the donor jenny affected the rates of positive flushings (pfr; p = . ) and embryo recovery (err; p < . ) as well as embryo quality (p = . ). err was also affected by the number of flushings (p < . ), donor age (p < . ), successive cycle within donor (p < . ), and jacks (p < . ). number of flushings (p < . ) and jack (p < . ) had a significant effect on pfr, whereas the day of flushing influenced the developmental stage (p < . ), embryo quality (p < . ), and diameter of embryos (p < . ). the number of flushings significantly influenced the diameter (p = . ) and embryo developmental stage (p = . ), whereas the developmental stage was statistically different between herds (p = . ). the factors influencing the success of this assisted reproductive technique were donor jenny, donor age, successive cycle within donor, day of flushing, number of flushings, and jack. the identification of these key points is crucial to achieve a higher efficiency of embryo transfer and vitrification processes, before considering their application in the conservation of endangered donkey breeds. keywords: donkey; embryo transfer; embryo recovery rate; embryo quality animals , , ; doi: . /ani www.mdpi.com/journal/animals http://www.mdpi.com/journal/animals http://www.mdpi.com https://orcid.org/ - - - https://orcid.org/ - - - x https://orcid.org/ - - - http://dx.doi.org/ . /ani http://www.mdpi.com/journal/animals https://www.mdpi.com/ - / / / ?type=check_update&version= animals , , of . introduction in the past, domestic donkeys (equus africanus asinus) were used as pack animals in agricultural activities, commerce, and militia [ , ], mainly due to their easy care, their resistance to diseases, and their physical resistance [ ]. however, the mechanization of agriculture in europe together with the consequent sharp decrease in mule breeding caused a drastic reduction of the donkey population [ – ]. currently, all spanish donkey breeds (andaluza, catalana, balear, majorera, asno de las encartaciones, and zamorano-leonés) are considered endangered (real decreto / , regulation of the national catalogue of endangered species). although the population size of the andalusian donkey has increased to animals in , only females were pure breed. moreover, the number of herds across spain has decreased ( herds), and the average herd size is five heads [ ], thereby increasing the possibility of mating of related animals. considering the contribution of donkeys to biodiversity [ ], milk and meat products production [ , ], or pet therapy [ ], strategies for the preservation of the genetic pool of donkey breeds and for the maintenance of the genetic heterozygosis of equine endangered species is highly advisable. the conservation of endangered species is an excellent opportunity for applying assisted reproductive technologies such as embryo transfer, embryo cryopreservation, and germplasm cryobanking. embryo transfer (et) has been successfully used for the conservation of equine endangered species such as przewalski´s horses (equus przewalskii) [ ], and numerous studies have been conducted in the past decades to investigate the suitability and efficiency of equine et [ ]. together with this technique, the cryopreservation of embryos and their storage in embryo banks offer several advantages to the preservation and management of equine endangered species [ , ]. however, in donkeys, the studies on both procedures are scarce and recent [ – ]. it is known that some factors may affect the embryo recovery rate and embryo diameter and morphological quality in mares, including the day of flushing, number of ovulations, age of the donor, and quality of semen [ ], and that morphological embryo quality has a major effect on pregnancy rates [ ]. other factors such as the size and age of embryos and storage of embryos may also affect pregnancy rates after et in horses [ , ]. in addition, previous studies have demonstrated that early-stage horse embryos (< µm) show better survival rates after cryopreservation than large embryos collected at a later day [ , ]. in donkeys, only a few studies have been conducted, and the results could not prove the influence of embryo quality and age on embryo recovery rate [ , ]. similarly, no effect on embryo recovery rate and quality was observed by pérez-marín et al. [ ] the aim of the present study was to determine which factors affect the recovery rate, morphological quality, and diameter in embryos from andalusian donkey jennies as a prerequisite to improve the success of both embryo transfer and cryopreservation in this endangered donkey breed. . materials and methods . . experimental animals and study location all animal procedures were approved by the ethical committee for animal experimentation of the university of cordoba (no. / / / ) and are in accordance with spanish laws for animal welfare and experimentation (real decreto / ). from february to december of three consecutive years ( – ), a total of twenty-six healthy andalusian jennies ( – years old), of known fertility, served as embryo donors, and eight andalusian jacks ( – years old) known to be fertile were used to mate the donors. to assess the effect of the age, the donor jennies were divided into three categories: ≤ (n = ), – (n = ), and ≥ years old (n = ). general health and reproductive history were recorded, and jennies were submitted to a general and reproductive physical examination [ ]. donors were housed, monitored, mated, and flushed in three different herds: the equine center for assisted reproduction of the centro de selección y reproducción animal (censyra, badajoz, spain), the centro rural malpica (palma del río, cordoba, spain) or the centro de medicina deportiva equina (cemede, cordoba, spain). the jennies were animals , , of housed in paddocks, the jacks were housed in stalls, and they were fed with hay, barley, and water ad libitum. . . oestrus synchronization and mating ovarian activity was evaluated by transrectal ultrasonography (aloka ssd , aloka co. ltd., tokyo, japan) on a biweekly schedule during diestrus and daily during oestrus until ovulation (day = day of ovulation). estrus was induced with one intramuscular injection of . mg luprostiol (prosolvin®, virbac, barcelona, spain) in the presence of corpus luteum. donor jennys received human chorionic gonadotropin (hcg; iu, intramuscularly; veterin corion®, divasa-farmavic s.a., barcelona, spain) to induce ovulation when a follicle of – mm was detected. next day, donor jennies were bred by live cover every other day until ovulation. . . embryo recovery and evaluation six to nine days after ovulation, donor jennies were flushed times with a total of l of lactated ringer´s solution (b. braun vetcare s.a., rubí, spain), as described by camillo et al. [ ] for donkeys. after the flushing, luprostiol was administered to donors to induce luteolysis. recovered embryos were evaluated for developmental stage (morula, early blastocyst, blastocyst, or expanded blastocyst) and morphological quality, and they were graded on a scale of – [ ], being excellent, being good, being fair, and being poor, degenerate, or dead (figure ). after the quality evaluation, the embryos were washed ten times in syngro® holding (bioniche animal health, washington, dc, usa), as previously described [ ]. the diameter of the embryos was measured under bright field conditions (sz olympus optical, tokyo, japan) using an ocular micrometer (scale of mm/ ), as previously described [ ]. animals , , x of animals , , x; doi: www.mdpi.com/journal/animals jennies were housed in paddocks, the jacks were housed in stalls, and they were fed with hay, barley, and water ad libitum. . . oestrus synchronization and mating ovarian activity was evaluated by transrectal ultrasonography (aloka ssd , aloka co. ltd., tokyo, japan) on a biweekly schedule during diestrus and daily during oestrus until ovulation (day = day of ovulation). estrus was induced with one intramuscular injection of . mg luprostiol (prosolvin®, virbac, barcelona, spain) in the presence of corpus luteum. donor jennys received human chorionic gonadotropin (hcg; iu, intramuscularly; veterin corion®, divasa-farmavic s.a., barcelona, spain) to induce ovulation when a follicle of – mm was detected. next day, donor jennies were bred by live cover every other day until ovulation. . . embryo recovery and evaluation six to nine days after ovulation, donor jennies were flushed times with a total of l of lactated ringer´s solution (b. braun vetcare s.a., rubí, spain), as described by camillo et al. [ ] for donkeys. after the flushing, luprostiol was administered to donors to induce luteolysis. recovered embryos were evaluated for developmental stage (morula, early blastocyst, blastocyst, or expanded blastocyst) and morphological quality, and they were graded on a scale of – [ ], being excellent, being good, being fair, and being poor, degenerate, or dead (figure ). after the quality evaluation, the embryos were washed ten times in syngro® holding (bioniche animal health, washington, usa), as previously described [ ]. the diameter of the embryos was measured under bright field conditions (sz olympus optical, tokyo, japan) using an ocular micrometer (scale of mm/ ), as previously described [ ]. (a) (b) figure . cont. animals , , of animals , , x of animals , , x; doi: www.mdpi.com/journal/animals (c) (d) figure . donkey embryos of various developmental stages and quality grades. (a) expanded blastocyst stage embryo, grade . note blastocoele cavity and distinct inner cell mass. the zona pellucida has been shed, and the capsule is surrounding the embryo. no morphologic abnormalities are present in this embryo; (b) blastocyst stage embryo, grade . note the distinct blastomere cells around the edge of the embryo and the capsule. a blastocoele cavity is just beginning to form within the center of the embryo. note minor imperfections, such as a few extruded cells, occasional discolored cells, and slight shrinkage of trophoblast from zona pellucida; (c) early blastocyst stage embryo, grade . note thick zona pellucida and capsule. note moderate level of imperfections, such as a high proportion of extruded cells, discoloration of remaining cell mass, and moderate shrinkage of trophoblast from zona pellucida; (d) expanded blastocyst stage embryo, grade . note complete collapse of the blastocoele. . . statistical analysis descriptive statistical analysis was performed, presenting the qualitative variables as frequencies and percentages, and quantitative as a mean ± standard error of the mean (sem). the effects of the year in which the study was performed ( – ), season (winter: december –march ; spring: march –june ; summer: june –september ; autumn: september –december ), photoperiod (positive: march–october; negative: november–february), herd ( – ), days of flushing for embryo recovery ( – ), number of flushings ( – ), donor ( jennies), donor age (≤ ; – ; ≥ years old), parity (nulliparous vs. multiparous), successive cycle within donor ( – ; – ; – ), number of ovulations per cycle (single vs. double), and jack ( donkeys) on positive uterine flushing rates (pfr; flushing where at least one embryo was recovered), embryo recovery rate (err; embryos recovered per cycle), and on ovulation rate (or; number of ovulations per cycles) were analyzed by the chi-square test and by the kruskal–wallis one-way anova, respectively. when the effect was statistically significant, post-hoc multiple comparisons were made using chi-square tests for categorical variables and mann–whitney u tests for continuous variables. to evaluate the effects of single factors (year, season, photoperiod, herd, day of flushing, number of flushings, donor, donor age, parity, successive cycle within donor, number of ovulations, and jack) on embryo quality (grade – ), diameter (μm), and developmental stage (morula, early blastocyst, blastocyst, expanded blastocyst) the kruskal–wallis one-way anova was performed. mean values were compared by duncan’s test. all analyses were performed using the statistical package spss v . (ibm spain, madrid, spain). differences were considered statistically significant when p < . . figure . donkey embryos of various developmental stages and quality grades. (a) expanded blastocyst stage embryo, grade . note blastocoele cavity and distinct inner cell mass. the zona pellucida has been shed, and the capsule is surrounding the embryo. no morphologic abnormalities are present in this embryo; (b) blastocyst stage embryo, grade . note the distinct blastomere cells around the edge of the embryo and the capsule. a blastocoele cavity is just beginning to form within the center of the embryo. note minor imperfections, such as a few extruded cells, occasional discolored cells, and slight shrinkage of trophoblast from zona pellucida; (c) early blastocyst stage embryo, grade . note thick zona pellucida and capsule. note moderate level of imperfections, such as a high proportion of extruded cells, discoloration of remaining cell mass, and moderate shrinkage of trophoblast from zona pellucida; (d) expanded blastocyst stage embryo, grade . note complete collapse of the blastocoele. . . statistical analysis descriptive statistical analysis was performed, presenting the qualitative variables as frequencies and percentages, and quantitative as a mean ± standard error of the mean (sem). the effects of the year in which the study was performed ( – ), season (winter: december –march ; spring: march –june ; summer: june –september ; autumn: september –december ), photoperiod (positive: march–october; negative: november–february), herd ( – ), days of flushing for embryo recovery ( – ), number of flushings ( – ), donor ( jennies), donor age (≤ ; – ; ≥ years old), parity (nulliparous vs. multiparous), successive cycle within donor ( – ; – ; – ), number of ovulations per cycle (single vs. double), and jack ( donkeys) on positive uterine flushing rates (pfr; flushing where at least one embryo was recovered), embryo recovery rate (err; embryos recovered per cycle), and on ovulation rate (or; number of ovulations per cycles) were analyzed by the chi-square test and by the kruskal–wallis one-way anova, respectively. when the effect was statistically significant, post-hoc multiple comparisons were made using chi-square tests for categorical variables and mann–whitney u tests for continuous variables. to evaluate the effects of single factors (year, season, photoperiod, herd, day of flushing, number of flushings, donor, donor age, parity, successive cycle within donor, number of ovulations, and jack) on embryo quality (grade – ), diameter (µm), and developmental stage (morula, early blastocyst, blastocyst, expanded blastocyst) the kruskal–wallis one-way anova was performed. mean values were compared by duncan’s test. all analyses were performed using the statistical package spss v . (ibm spain, madrid, spain). differences were considered statistically significant when p < . . animals , , of . results the average ovulation rate in donor jennies is shown in table . the average rate per jenny was . ± . and varied significantly among jennies (p = . ). results of statistical analysis also showed differences among herds (p = . ), while no differences (p > . ) were observed among donor age categories, years, photoperiods, and seasons (table ). the single ovulation rate was . % ( / ), while for double ovulation, the rate was . % ( / ). single ovulation occurred with equal frequency (p > . ) on both ovaries (left ovary: . %; right ovary: . %). however, the incidence of bilateral double ovulation ( . %) was significantly higher (p < . ) than that of ipsilateral double ovulation ( . %). table . ovulation rate (mean ± sem) in cycles of donor jennies according to donor age categories (≤ , – or ≥ years old), parity (nulliparous or multiparous), year of the study (first, second or third), season of the year (spring, summer, autumn, or winter), photoperiod (positive or negative), and herd ( , , or ). variable no. of cycles ovulation rate p-values donor age ≤ years . ± . . – years . ± . ≥ years . ± . parity nulliparous . ± . . multiparous . ± . year first . ± . . second . ± . third . ± . season spring . ± . . summer . ± . autumn . ± . winter . ± . photoperiod positive . ± . . negative . ± . herd . ± . ab . . ± . b . ± . a total . ± . a,b values with different superscript differ significantly. a total of uterine flushings were carried out during the study, of which were positive (pfr: . %; / ), and embryos were recovered out of estrous cycles (err: . %; / ) and ovulations (embryo recovery per ovulation: . %; / ). the embryo diameter and morphological quality score of donkey embryos are shown in table . overall, of embryos ( %) were classified as grade (excellent), ( %) were classified as grade (good) and ( %) were classified as grade (fair). the most frequent stages of development observed were early blastocyst ( %, / ) and expanded blastocyst ( %, / ), which were followed by morula ( %, / ) and blastocyst ( %, / ) stages. the embryo quality score significantly (p < . ) varied according to developmental stage and day of recovery, being lower for blastocysts or when flushed at day after ovulation (table ). as expected, the embryo diameter was also affected (p < . ) by the developmental stage and day of flushing. the mean diameter of embryos was . ± . µm animals , , of (range: – µm) for morulae, . ± . µm (range: – µm) for early blastocysts, . ± . µm (range: – µm) for blastocysts, and . ± . µm (range: – µm) for expanded blastocysts. moreover, it was observed that embryos recovered at days after ovulation had a diameter of . ± . µm (range: – µm); those collected on day measured . ± . µm (range: – µm); while the mean diameter at and were . ± . µm (range: – µm) and ± . µm (range: – µm), respectively (table ). table . diameters (mean ± sem) and morphological quality score ( – ) of donkey embryos collected at days to after ovulation according to their developmental stage (morula, early blastocyst, blastocyst, or expanded blastocyst) and day of recovery ( , , , or ). variable grade diameter (µm) no. (%) embryo quality at collection grade grade grade developmental stages morula . ± . b . ± . a ( %) ( %) a ( %) ( %) early blastocyst . ± . ab . ± . a ( %) ( . %) a ( . %) ( . %) blastocyst . ± . a . ± . a ( %) ( %) b ( %) ( %) expanded blastocyst . ± . ab . ± . b ( %) ( . %) b ( . %) ( . %) day of recovery . ± . b . ± . a ( %) ( . %) a ( . %) b ( . %) b . ± . ab . ± . a ( %) ( . %) a ( . %) b ( . %) a . ± . a . ± . b ( %) ( . %) b ( . %) b ( %) a . ± . ab . ± . c ( %) ( . %) a ( %) a ( . %) b total . ± . . ± . ( %) ( %) ( %) ( %) a–c values with different superscript differ significantly (p < . ). presented in table are the developmental stage and embryo size for day – embryos. at day after ovulation, embryos were mostly at the morula stage ( / , . %); meanwhile, . % ( / ) of embryos recovered at day were early blastocyst stage embryos. expanded blastocysts were recovered on day ( / , . %) and ( / , %). at day – , most of the embryos recovered were small (< µm) or medium ( – µm) embryos; meanwhile, large embryos (> µm) were recovered at days ( / , . %) and after ovulation ( / , %; table ). table . developmental stage (morula, early blastocyst, blastocyst, or expanded blastocyst) and embryo size (< µm, – µm or > µm) of donkey embryos collected at day to after ovulation. day of recovery no. (%) developmental stage embryo diameter morula early blastocyst blastocyst expanded blastocyst < µm – µm > µm ( %) ( . %) a ( . %) b ( %) b ( %) b ( . %) a ( . %) b ( %) c ( %) ( . %) b ( . %) a ( . %) b ( . %) b ( . %) a ( . %) a ( . %) b ( %) ( %) b ( %) b ( . %) b ( . %) a ( %) b ( . %) b ( . %) a ( %) ( %) b ( %) b ( %) b ( %) a ( %) b ( %) b ( %) a total ( %) ( %) ( %) ( %) ( %) ( %) ( %) ( %) a–c values with different superscript differ significantly (p < . ). table shows extrinsic factors that affect the rate of positive flushings (pfr) and the embryo recovery rate (err). none of the factors studied affected (p > . ) pfr or err; however, there was an effect of the number of flushings ( , , or ) on both rates, which were significantly (p < . ) reduced in the third flushing (pfr: . %; err: . ). animals , , of table . extrinsic factors affecting the rate of positive flushings and embryo recovery rate in andalusian donkeys. factor positive flushings p-value embryo recovery rate p-value year first / ( . %) ns / ( . ) ns second / ( . %) / ( . ) third / ( . %) / ( . ) season spring / ( . %) ns / ( . ) ns summer / ( . %) / ( . ) autumn / ( . %) / ( . ) winter / ( . %) / ( . ) photoperiod positive / ( . %) ns / ( . ) ns negative / ( . %) / ( . ) herd / ( . %) ns / ( . ) ns / ( . %) / ( . ) / ( . %) / ( . ) day of flushing / ( . %) ns / ( . ) ns / ( . %) / ( . ) / ( . %) / ( . ) / ( . %) / ( . ) no. of flushings / ( %) a . / ( . ) a . / ( %) a / ( . ) a / ( . %) b / ( . ) b total / ( . %) / ( . ) a,b values with different superscript differ significantly; ns, not significant. the intrinsic factors that affect pfr and err are shown in table . pfr did not vary (p > . ) with any of the studied variables except the donor (p = . ). no differences between parity (p = . ) and number of ovulations (p = . ) were detected for err (table ). in contrast, err not only varies among donors (p < . ) but also among donor age groups (p < . ) and successive cycles within the donor (p < . ). err was higher (p < . ) in jennies of – years of age ( . ; / ) with respect to the other groups (≤ years: . ( / ); ≥ years: . ( / )). with regard to the number of ovulations in the same donor, err was significantly higher (p < . ) in the first group ( – cycles: . ; / ) with respect to the second ( – cycles: . ; / ) and third ( – cycles: . ; / ) groups. as shown in table , pfr and err varied (p > . ) among jacks. four jacks (numbers , , , and ) that were used in . % of cycles ( / ) showed good results for both rates (pfr: . – %; err: . – . ). the other three jacks (numbers , , and ) that were used in . % of cycles ( / ) yield a lower pfr ( – . %) and err ( . – . ) than the previous group, but this was not significant statistically (p > . ). no embryos were obtained with jack number , although he was used only two times. developmental stage, embryo quality, and diameter of the embryos recovered in this study are shown in tables – . none of the extrinsic factors studied significantly influenced (p < . ) these three variables, except for the day of flushing ( – ), which significantly influenced the developmental stage (p < . ), embryo quality (p < . ), and diameter of embryos (p < . ; table ). similarly, the number of flushings ( – ) significantly influenced the diameter (p = . ) and embryo developmental stage (p = . ), whereas the developmental stage was statistically different among herds (p = . ; table ). animals , , of table . intrinsic factors affecting the rate of positive flushings and embryo recovery rate in andalusian donkeys. factor positive flushings p–value embryo recovery rate p–value donor / ( %) b . / ( . ) b . / ( %) a / ( . ) a / ( %) a / ( . ) a / ( . %) ab / ( . ) a / ( %) a / ( . ) a / ( %) ab / ( . ) ab / ( . %) a / ( . ) a / ( %) a / ( . ) a / ( %) a / ( . ) a / ( %) b / ( . ) b / ( %) a / ( . ) a / ( %) a / ( . ) a / ( %) ab / ( . ) ab / ( %) a / ( . ) a / ( %) a / ( . ) a / ( . %) a / ( . ) a / ( %) b / ( . ) b / ( %) a / ( . ) a / ( %) a / ( . ) a / ( %) a / ( . ) a / ( . %) ab / ( . ) b / ( %) b / ( . ) b / ( %) a / ( . ) a / ( %) a / ( . ) a / ( %) ab / ( . ) ab donor age ≤ years / ( . %) ns / ( . ) b . – years / ( . %) / ( . ) a ≥ years / ( %) / ( . ) b parity nulliparous / ( . %) ns / ( . ) ns multiparous / ( . %) / ( . ) successive cycle within donor – / ( . %) ns / ( . ) a . – / ( %) / ( . ) b – / ( %) / ( . ) c no. of ovulations single / ( . %) ns / ( . ) ns double / ( . %) / ( . ) total / ( . %) / ( . ) a–c values with different superscript differ significantly; ns, not significant. table . variation in the rate of positive flushings and embryo recovery rate between andalusian jacks. jack mated donors positive flushings p-value embryo recovery rate p-value / ( . %) ab . / ( . ) ab . / ( %) a / ( . ) a / ( %) a / ( . ) a / ( %) b / ( . ) b / ( %) ab / ( . ) ab / ( . %) a / ( . ) a / ( . %) a / ( . ) a / ( %) ab / ( . ) ab total * / ( . %) / ( . ) a,b values with different superscript differ significantly; * missing data (n = ). animals , , of table . extrinsic factors affecting the developmental stage, embryo quality, and diameter of embryos in andalusian donkeys. factor no. developmental stage p-value embryo grade p-value embryo diameter p-value year first . ± . ns . ± . ns . ± . ns second . ± . . ± . . ± . third . ± . . ± . . ± . season spring . ± . ns . ± . ns . ± . ns summer . ± . . ± . . ± . autumn . ± . . ± . . ± . winter . ± . . ± . . ± . photoperiod positive . ± . ns . ± . ns . ± . ns negative . ± . . ± . . ± . herd . ± . a . . ± . ns . ± . ns . ± . b . ± . . ± . . ± . b . ± . . ± . day of flushing . ± . a . . ± . b . . ± . a . . ± . b . ± . b . ± . a . ± . c . ± . a . ± . b . ± . c . ± . ab . ± . c no. of flushings . ± . c . . ± . ns . ± . b . . ± . ab . ± . . ± . a . ± . a . ± . . ± . a total . ± . . ± . . ± . a–c values with different superscript differ significantly; ns, not significant. table . intrinsic factors affecting the developmental stage, embryo quality, and diameter of embryos in andalusian donkeys. factor no. developmental stage p-value embryo grade p-value embryo diameter p-value donor * - ns - . - ns . ± - . ± - - . ± . . ± . a . ± . . ± . . ± . ab . ± . . ± . . ± . ab . ± . . ± - . ± - . ± - . ± . . ± . ab . ± . . ± - . ± - . ± - . ± - . ± - . ± - * - - - . ± . . ± . b . ± . . ± - . ± - . ± - . ± . . ± . a . ± . . ± . . ± . ab . ± . . ± - . ± - . ± - . ± . . ± . a . ± . * - - - . ± - . ± - . ± - . ± . . ± . c . ± . . ± . . ± . ab . ± . . ± . . ± . a . ± . * - - - . ± . . ± . a . ± . . ± . . ± . a . ± . . ± - . ± - . ± - donor age ≤ years . ± . ns . ± . ns . ± . ns – years . ± . . ± . . ± . ≥ years . ± . . ± . . ± . parity nulliparous . ± . ns . ± . ns . ± . ns multiparous . ± . . ± . . ± . animals , , of table . cont. factor no. developmental stage p-value embryo grade p-value embryo diameter p-value successive cycle within donor – . ± . ns . ± . ns . ± . ns – . ± . . ± . . ± . – . ± . . ± . . ± . no. of ovulations single . ± . ns . ± . ns . ± . ns double . ± . . ± . . ± . total . ± . . ± . . ± . a–c values with different superscript differ significantly; ns, not significant; * missing data. table . variation in developmental stage, embryo quality, and diameter of embryos between andalusian jacks. jack mated donors developmental stage p-value embryo grade p-value embryo diameter p-value . ± . ns . ± . ns . ± . ns . ± . . ± . . ± . . ± . . ± . . ± . . ± - . ± - . ± - . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . total * . ± . . ± . . ± . ns, not significant; * missing data (n = ). table shows that no influence was detected (p > . ) of the intrinsic factors on developmental stage, embryo quality, and diameter of embryos, except for the donor, which affected the embryo quality (p = . ). moreover, no differences (p > . ) were detected among jacks for these three variables (table ). . discussion due to the similarities in the reproductive physiology between horses and donkeys, several assisted reproductive technologies (arts) routinely used in horses have been applied directly to donkeys. hence, previous studies have demonstrated the suitability of mare et techniques for collecting embryos in jennies [ ]. in this line, numerous studies have been conducted to examine the factors that affect embryo recovery, quality, and diameter in mares [ , , ]. however, in donkeys, these studies have been very scarce [ , ], and they are often performed on a limited number of animals, cycles, or embryos. therefore, more studies are needed to optimize embryo recovery rates and maximize the success of future et programs in donkeys. in this study, in which donor jennies and cycles were used, the average ovulation rate per jenny was . ± . . this finding was slightly lower than the reported average in spontaneous ( . ± . ) and prostaglandin f alpha (pgf α)-induced ( . ± . ) estrus of andalusian jennies [ ]. these small differences could be explained by other factors (such as feeding management, donor age, reproductive status, season of the year, and the use of drugs to induce ovulation) that can affect the incidence of multiple ovulations, as reported in mares [ , – ] and donkeys [ , ]. in jennies, the incidence of multiple ovulation was reported to range between . % and % [ – ]. in our study, the single ovulation rate was . %, while the double ovulation rate was . %. double ovulation in jennies was similar to that reported in catalonian jennies ( . %) [ ] and in the asinina de miranda jennies ( . %) [ ]. however, the incidence of double ovulation in this study was lower than that reported in spontaneous ( . %) and pgf α-induced cycles ( . %) in andalusian jennies [ ]. it is interesting to note that single ovulation occurred with equal frequency on both ovaries, as also reported by other authors [ , ]. similar to that reported by taberner et al. [ ], a minimally greater frequency of ovulation for the left ovary was found ( . % vs. . %), but the difference was animals , , of not significant. on the other hand, the incidence of bilateral double ovulation was significantly higher than that of ipsilateral double ovulation, which agrees with findings for mares [ ] and jennies [ ]. no influence of the age of the donor on the ovulation rate was observed in this study; however, the ovulation rate was numerically ( . ± . %), but not significantly higher, in the older jennies (≥ years old). these results are consistent with previous findings in jennies [ , ] and mares [ ]. although the reason for this fact remains still unclear, it has been suggested that increased ovarian stimulation or enhanced ovarian receptivity to that stimulation may be involved. thus, multiovulation would be a natural strategy to ensure gestation in older females, which have a reduced ability to become pregnant [ ]. the ovulation rate did not vary among years, seasons, and photoperiods, but it tended to be lower in summer (p = . ). similar findings have been reported in previous studies [ , ]. ginther et al. [ ], in a study using different breeds and geographical latitude than our study of donkeys, observed that the incidence of multiple ovulations was not affected by the season of the year. the statistical analysis revealed significant differences among herds (p = . ), which could be explained by the individuals comprising each herd. in fact, this study pointed out the existence of significant differences among jennies (p = . ). in our study, in which embryos were used, the overall err following non-surgical flushing on days – was . %, which was higher than those previously reported in different breeds of donkeys: . % in jennies of unknown breed [ ], . % in poitou jennies [ ], . % in pantesca jennies [ ], % in amiata jennies [ ], . % in pega jennies [ ], and . % in andalusian and zamorano-leones jennies [ ]. the eer obtained in our experiment was also higher than the rates reported in the literature for fertile mares in commercial et programs [ ]— – % for fresh, % for chilled, and % for frozen semen—but similar to that obtained in young fertile mares inseminated with fresh semen, % [ ]. these results are likely due to the age of the jennies used in the study and the physical and reproductive assessment performed before, including donors in the experimental group. it is known that the major factor affecting embryo recovery is the donors´ reproductive history. hence, embryo recovery for old sub-fertile mares can be as low as – % per cycle [ ]. other factors that affect embryo recovery include semen quality and semen type (fresh, cooled, or frozen) [ ]. in our study, all donors were selected carefully, based on their reproductive history and clinical examination, and they were mated naturally with jacks of proven fertility. although the pfr and err varied among jacks, seven out of eight jacks showed moderate to good results for both rates (≥ % and ≥ . , respectively). only one jack had low fertility (zero out of two positive flushes), but he was used only twice, which could mitigate its negative effect on average pfr and err. in addition, hcg was used as the ovulation inductor. previous studies have clearly demonstrated that ovulation induction can enhance the efficiency of arts in domestic animal species, including the donkey [ ]. the embryo morphology score is the most common method used to evaluate embryo quality [ ]. in line with previous findings [ , , , ], % of the recovered embryos had a quality grade of excellent (grade ) or good (grade ). in our experiment, none of the extrinsic factors analyzed (year of the study, season of the year, photoperiod, herd or day, of flushing) affected significantly pfr or err. consistent with previous findings [ ], the err obtained in the first year ( . ) was numerically lower than that obtained in the second ( . ) and third ( . ) year, which could be explained by the inexperience with this technology (i.e., et) in donkeys. the absence of a photoperiod influence on embryo recovery has been previously described in donkeys [ , ]. the study carried out in pantesca donkeys [ ] also noted that the time of the year did not affect pfr and err. considering these results, we could state that seasonality has little impact on reproductive performance of andalusian jennies, which can get pregnant naturally all year round, as previously reported for other donkey breeds [ ]. this fact brings the possibility of applying et in andalusian donkeys along the year. in donkeys, the influence of the day of flushing on err has not been well established in the literature [ , ]. under our experimental conditions, pfr and err were not different among animals , , of days , , , and . similar findings have been reported in mares [ , ]. however, embryo diameter and developmental stage varied widely depending on the day of recovery, which is consistent with previous studies [ , ]. in line with these findings, poor-quality embryos were collected at day , and err tended to be lower (p = . ), flushing the uterus days after ovulation. taken all together, our results emphasize the importance of collecting day to donkey embryos, smaller than µm in diameter and with good morphological score, to ensure vitrification success, as has been previously suggested [ ]. from a practical point of view, another interesting observation was the effect of the number of flushings ( , , or ) on both rates (pfr and err), which were significantly reduced in the third flushing ( . % and . , respectively), indicating that the majority of embryo collections require one or two maximum flushings. in addition, embryo diameter and developmental stage varied among flushings, with larger and older embryos in the first flushing. thus, our results could suggest that the larger diameter of the older embryos could facilitate their recovery [ ]. the embryos recovered in herd were in earlier developmental stages than in the other herds. these results were probably due to the fact that all the embryo rerecovered in this herd ( embryos) were flushed – days after ovulation, while in herds ( embryos) and ( embryos), flushes were carried out from day to after ovulation, thus increasing the average diameter and developmental stage of the recovered embryos. regarding the intrinsic factors, pfr did not vary with any of the studied variables (i.e., donor age, parity, successive cycle within donor, and number of ovulations) except for the donor jenny. in contrast, err not only varied among donors but also among donor age categories, showing higher values in jennies of – years of age ( . ) compared with all the other categories of age. moreover, both pfr and err were not different between younger (≤ years old) and older (≥ years old) jennies. our findings are in contrast with the results of previous studies [ , ], which reported no effect of donor age and donor jenny on the aforementioned rates. however, the effect on err of donor age and donor mare have been reported by many authors [ , , , ], in which old age (> years old) and a history of sub-fertility were related to a lower err. our results could suggest that embryo donors between and years are the best to be used in an et program. the effect of repeated uterine flushings has been previously described in mares [ ], which was associated with increased chronic inflammation of the uterus. although previous studies failed to observe this negative effect in donkeys [ ], in our experiment, the err on successive cycles from to was higher ( . ) than in attempts from to ( . ) and from to ( . ). the differences observed between studies may be explained by different experimental conditions. therefore, in our study, young (≤ years), mature ( – years), and old (≥ years) donor jennies were employed during the entire period of the study, while only young jennies ( – years old) were used in this previous work [ ]. moreover, a higher number of donors ( , , and , respectively) and cycles ( , , and , respectively) were used in each group. it has been previously described that the occurrence of multiple ovulations enhances err in mares [ , ] and donkeys [ , ], but this effect was not shown in our study. however, despite the absence of statistical significance, err after single ovulation tended to be lower than that obtained after double ovulation ( . vs. . ; p = . ). it has been also reported that ipsilateral double ovulations resulted in a lower err than bilateral double ovulations [ ], which could be caused by interference between two or more simultaneous ovulations in the limited space of the ovulation fossa [ , ]. in the present study, the incidence of ipsilateral double ovulations was only . %, and no significant difference in err was observed between bilateral and ipsilateral ovulations ( . % vs. . %; p = . ). conversely, the number of ovulations in the same donor influenced err, being significantly higher in the first group ( – cycles: . ; / ), but no effect on pfr was observed. these results partially agree with the findings of camillo et al. [ ], who observed a significant effect on both rates. finally, we observed that the parity of the donors did not have an effect on pfr and err. in cattle, animals , , of the parity of recipients does not affect pregnancy rates following the transfer of fresh and frozen embryos [ ]. however, to our knowledge, no data are available for mare and jenny donors. . conclusions based on our results, we can conclude that the donor jenny was the main factor that affects the rate of positive flushings and recovery rates as well as the embryo quality. other factors that affected embryo recovery rate were the number of flushings, donor age, successive cycle within donor, and jack. meanwhile, the rate of positive flushings was affected by the number of flushings and the jack. from a practical point of view, these findings could indicate that the majority of embryo collections require one or two maximum flushings per cycle. moreover, the negative effect of repeated uterine flushings on embryo recovery rate was proven, being lower after six consecutive cycles. on the other hand, the day of flushing had a significant effect on embryo quality and diameter, which emphasizes the importance of collecting day to donkey embryos, with good morphological score and smaller than µm in diameter, if embryos are going to be cryopreserved. author contributions: conceptualization, m.h. and j.d.; methodology, m.b., i.o., m.d.-j., b.p., c.c., j.j.c., v.g.-a., a.d. and j.d.; software, m.b. and j.d.; validation, m.h., m.b. and j.d.; formal analysis, m.b., i.o., m.d.-j., b.p. and c.c.; investigation, m.b., i.o., m.d.-j., b.p. and c.c.; resources, m.h. and j.d.; data curation, m.b., m.h. and j.d.; writing—original draft preparation, i.o., m.h. and j.d.; writing—review and editing, i.o., m.h. and j.d.; visualization, m.h. and j.d.; supervision, m.h. and j.d.; project administration, m.h. and j.d.; funding acquisition, m.h. and j.d. all authors have read and agreed to the published version of the manuscript. funding: this work has been supported by grant agl - -r (secretaría de estado de investigación, desarrollo e innovación, ministerio de economía y competitividad, spain). i.o. was supported by a ph.d. fellowship from the ceia (andalusia, spain) with funding provided by banco santander through its global division, santander universidades. m.d.-j. and c.c. were supported by a fpu fellowship from spanish ministry of education, culture, and sports. acknowledgments: we are extremely grateful to the centro rural malpica (palma del río, cordoba, spain) for providing the animals and facilities. conflicts of interest: the authors declare no conflict of interest. the funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results. references . gandini, g.c.; villa, e. analysis of the cultural value of local livestock breeds: a methodology. j. anim. breed genet. , , – . 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[crossref] publisher’s note: mdpi stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . /aab- - - http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	materials and methods 	experimental animals and study location 	oestrus synchronization and mating 	embryo recovery and evaluation 	statistical analysis 	results 	discussion 	conclusions 	references wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( 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multi-site behavioral, ran- domized phase ii clinical trial of a music therapy intervention. methods: the smart study is complex due to several key fea- tures: two culturally different funding sources, participating sites and hospitals; target sample of adolescents/young adults with cancer currently undergoing stem cell transplant, multiple measure- ment times, on-line remote data entry by participants and study per- sonnel, and a behavioral intervention that includes intervention sessions delivered over weeks for both study arms. to implement and sustain the research project, a multifaceted and strategic ap- proach was used that included frequent communication to support and foster respectful communication among the team members. the team overcame challenges of work demands and priorities, dif- ferences in the language and cultures in academia and clinical prac- tice. findings: despite the complexity of the study, nurses involved across sites in both academic and clinical settings experienced sev- eral benefits related to professional role fulfillment, hospital-wide advantages, learning opportunities, clinical practice improvement, and networking (see table). implications: academic/clinical part- nerships can result in a win-win for healthcare organizations and universities, developing nurse leaders, nursing administrators, and educators. the clinical institutions can benefit from the expertise and mentoring that foster excellence in research, scholarship, and evidence-based nursing care. nurse scientists in academic settings can benefit from the practical implementation insights and in-depth knowledge of patients that clinicians at the bedside bring to the col- laboration. clinically relevant surface bacteria in an outpatient oncology facility wilson, d.e. , romero, k. , little, k. , webb, s.c. . greenville tech- nical college, greenville, sc; cancer centers of the carolinas, green- ville, sc. in this study, surfaces touched frequently by staff and patients were chosen for their potential as sources for nosocomial infection by clinically relevant bacteria at the cancer centers of the carolinas (ccc) in greenville, sc. the motivation for the project is to limit the known risk of infection for immunocompromised patients and review infection control practices. ccc staff identified high touch surfaces within the busiest facility of the organization. with the as- sistance from a greenville technical college instructor and stu- dent, environmental surfaces from both patient and staff-only areas were cultured. selective media and biochemical tests were used for species identification. in addition, twenty employees, in- cluding management, physicians, nurses, and laboratory personnel, volunteered to undergo testing for methicillin restistant staphyloc- cus aureus (mrsa) via nasal swabs. surfaces on which clinically relevant species were most frequently found were computer keyboards, phones, bathrooms, tables and counter tops, and door edges above the knobs. other areas of inter- est included remote controls, patient beds, backs of chairs, and a re- frigerator handle. the cultures revealed common environmental and body flora which have potential pathologic significance in an oncology setting. isolated species of interest included staphylococcus epidermidis, staphylococcus aureus, staphylococcus saprophyticus, entero- bacter agglomerans, enterococcus species (group d strep), and acineto- bacter species. it was noted that no escherichia coli was found on any of the sampled surfaces. in the volunteer employee mrsa test, no employees tested positive. since the completion of the study, staff awareness at all levels has increased and new protocols are being im- plemented to improve infection control. using peer presentations to meet the education needs of blood & marrow transplant nurses: increasing knowledge and promoting retention sullivan, l.m. froedtert hospital/medical college of wisconsin, mil- waukee, wi. rationale: in informal conversation, a common concern ex- pressed by nurses leaving our blood & marrow transplant (bmt) unit included feeling overwhelmed by the amount of infor- mation required to practice safely. given the nursing shortage and highly specialized nature of bmt nursing, it is vital that a bmt unit retain knowledgeable nursing staff. purpose: this poster will describe how the bmt nursing staff at froedtert hospital assessed learning needs, presented education opportunities, and evaluated outcomes in order to increase knowl- edge and retention. interventions: early in , our educator as- sessed education needs of our bmt nurses with a written survey. staff indicated topics that interested them most: specific disease processes (leukemia, lymphoma, and multiple myeloma), the differ- ences between autologous, allogeneic and non-myeloablative trans- plants, and oncologic emergencies. they also reported that live presentations were a preferred method of receiving the information. our bmt development council, the arm of shared governance at froedtert responsible for education, set up classes on the chosen topics. experienced bmt nurses, and some less experienced nurses with support, chose a topic and presented a one hour-long class with microsoft powerpoint� slide shows and handouts. our educator obtained approval for contact hours for attendees. evaluation: attendees at each class filled out an evaluation form. a five point likert-type scale ( strongly agree, agree, slightly agree, disagree, strongly disagree) was used to rate the perceived increase in knowledge, the expertise of the presenter, and the appropriateness of the teaching strategies. average ratings in these areas for all presentations were . , . and . respectively. when the series of seven classes was complete, a follow-up survey on the overall effectiveness of the presentations was done. the same likert-type scale was used to rate the effectiveness of the teaching strategies ( . ), perceived increase in knowledge ( . ), pos- itive impact on patient care ( . ), support for peers presenting ( . ), and promoting retention ( . ). in the past year, we have had no res- ignations where lack of confidence in their level of knowledge was a reported factor in the decision to resign. implications: when im- plemented with ongoing nursing input, peer presentations resulted in a strong feeling by nursing staff that their knowledge increased and retention was improved. from the ground up: building a patient and family support program for the university of north carolina hospitals’ bone marrow and stem cell transplant program talbert, g., covington, d., hinshaw, b., o’dell, p., sharf, s., kivette, k. university of north carolina hospitals, chapel hill, nc. the university of north carolina hospitals’ bone marrow and stem cell transplant program was established in . in the years since, hundreds of patients have undergone transplants at unc. the average length of the inpatient stay for bmt patients is twenty six days. for the majority of those days the patient is confined to his or her hospital room. this isolation takes a huge toll on the patient as well as on their caregivers. unc’s bmt unit has many wonderful resources for patients, including nurse coordinators, a social worker, a recreational therapist, a chaplin, many talented bed- side nurses and other bmt team members. nursing, along with other key services, identified the need for more focused patient and family support. in an effort to jump- start a program to provide this support, the nurse manager con- tacted the leukemia and lymphoma society for their input and guidance. an initial group began to meet biweekly to brainstorm as to how to best get the additional needed support for patients and their caregivers. this group consisted of representatives from the following groups: inpatient nursing, recreational therapy, social work, nurse coordinators and the leukemia and lymphoma society. from this meager beginning a strong patient and family support program has emerged. this program has been embraced by all of the members of the inpatient care team and continues to expand the resources that it is able to offer patients and their care- givers. poster session ii the purpose of this poster is to describe how unc hospitals’ be- gan its patient and family support program and how this program has impacted patient outcomes and patient satisfaction. stem cell transplantation patient family caregivers: a pro- gram focused on ‘‘caring for the caregiver’’ adornetto-garcia, d.l., williams, l.a., jackson, a., norman, l., lederleitner, c., mir, m. md anderson cancer center, houston, tx. one of the most important aspects of stem cell transplantation (sct) is identifying a family caregiver to care for the patient during the transplant journey. at one of the largest transplant centers in the county, the focus is to develop a comprehensive sct caregiver program. the program is based on current caregiver literature and on the qualitative research of dr. loretta wiliams. the pro- gram is based on six themes identified in dr. williams’s research and includes commitment, expectation management, role negotia- tion, self care, new insight and role support. there are three components of the sct caregiver program. the first component is the development of a comprehensive caregiver manual. the manual will contain both education and resource in- formation focused specifically towards the family caregiver. the second component is to provide caregivers with expressive art ma- terials such as journals, photo albums and scrap books. researchers have suggested that psychological symptoms rather than physical symptoms are the most overwhelming to most caregivers and that – % suffer from these symptoms. the use of creative activities may promote feelings of well being, provide comfort, and lower anxiety. the third component is to conduct quarterly caregiver appreciation weeks. during one week of each quarter, caregivers are offered opportunities to participate in a variety of activities. the activities include massage, journaling, scrap booking and bingo. providing this recognition is our way to acknowledge the caregiver as an important person in the sct journey. in summary clinicians can provide support to family caregivers by providing them with education and expressive arts, and by acknowl- edging their unique contributions to the sct patients. the devel- opment of the sct caregiver program will provide the framework to meet the needs of the family caregiver throughout their sct journey. nursing care of the bone marrow transplant patient in sep- tic shock with acute respiratory distress syndrome mulholland, k. froedtert hospital, milwaukee, wi. purpose: provide a case study of a complex bone marrow trans- plant (bmt) patient in septic shock with acute respiratory distress syndrome (ards). to educate nurses about the pathophysiology of and nursing interventions for a patient in septic shock with ards. rationale: due to the immunocompromised nature of the bmt patient, sepsis and ards are more frequently seen in this population. the effects can be devastating and often result in multi-system organ failure and death. nurses can play a key role in patient outcomes by recognizing the signs and symptoms of sep- tic shock and ards. it is necessary for nurses to understand the cur- rent treatments and interventions to provide high quality patient care. history: the case study is based on a thirty-eight year old male diagnosed with hodgkin’s lymphoma who underwent autog- olous and allogenic bone marrow transplants. he was admitted to the bmt unit with worsening renal insufficiency. the night before he was scheduled to have a mahukar placed, he aspirated some water with his nighttime medications. throughout the night his oxygen requirements increased. while having the mahukar placed, his ox- ygen level dropped and he was intubated. interventions: the pa- tient required critical care interventions, including multiple vasopressors, frequent ventilator changes, and continuous renal re- placement therapy (crrt). he was medically paralyzed and re- quired advanced cardiac life support. implications: bmt nurses need a current knowledge base in the care of the septic and ards patient. nurses should be aware of the risk factors for sepsis and ards and be able to recognize the signs and symptoms of both conditions. it is important for nurses to be knowledgeable of the current treatment and interventions for septic shock and ards in order to take quick action in these emergency situations. successful integration of complementary therapies in a combined adult and pediatric bone marrow transplant unit mueller, k., farmer, a., talbert, g., shea, t. university of north carolina hospitals, chapel hill, nc. the university of north carolina hospitals’ bone marrow and stem cell transplant program was established in . since that time, hundreds of transplants have been performed. many changes have occurred: new regimens, new chemotherapies and other medications, and the addition of biotherapies. unfortunately, the side effects of pain and discomfort during treatment still exist. pain medications have been part of the transplant process since the beginning. morphine, hydromorphone, fentanyl, and others have helped smooth the rough road of transplant. antiemetics have been used to reduce the side effects of nausea and vomiting. recently, complementary therapies have further paved the way to a more easily tolerated transplant experience. at unc hospitals, the bone marrow and stem cell transplant program has incorporated massage therapy, relaxation and medita- tion exercises, pet therapy, aromatherapy, healing touch, singing bowls, and prayer labyrinths into its practice for those patients in- terested in combining complementary therapies with medication to decrease the intensity of pain with treatment. patients may have massages in their rooms. they may use a prayer labyrinth to become grounded and connect with their spiritual selves. they also have the opportunity to use singing bowls to focus energy. our recreational therapists guide patients into meditation exercises using guided imagery, biofeedback, diaphragmatic breathing, and relaxation tapes to calm fears and relieve discomfort. the purpose of this poster is to describe the complementary ther- apies utilized by unc’s bone marrow and stem cell transplant program and the ways in which patients undergoing transplants have benefited from these therapies. preventing falls for hematopoietic stem cell patients wood, j.m., schuldt, t.l., eilers, j. nebraska medical center, omaha, ne. in accordance with joint commission’s national patient safety fall prevention goal, we have focused on decreasing falls in our he- matopoietic stem cell (hsct) patients. the medications and side effects that accompany hsct place this population at high risk for falls. sustained low platelet counts following transplant place the patients at greater risk for life threatening injuries in the event of a fall. in attempt to decrease our fall rate, we reviewed incident reports and conducted post fall patient interviews. we identified the high risk group to be the alert and oriented patients in their ’s and ’s, most involving toileting issues. interviews determined the most frequent reasons for not calling for assistance were not ac- knowledging increased weakness and a desire to maintain personal dignity and independence with toileting. we initiated an extensive education program to help patients gain an understanding of their fall risk and the potential seriousness of related injuries. patient/fam- ily education begins pre-transplant, is followed up on by the 	clinically relevant surface bacteria in an outpatient oncology facility 	using peer presentations to meet the education needs of blood & marrow transplant nurses: increasing knowledge and promoting retention 	from the ground up: building a patient and family support program for the university of north carolina hospitals’ bone marrow and stem cell transplant program 	stem cell transplantation patient family caregivers: a program focused on ‘‘caring for the caregiver’’ 	nursing care of the bone marrow transplant patient in septic shock with acute respiratory distress syndrome 	successful integration of complementary therapies in a combined adult and pediatric bone marrow transplant unit 	preventing falls for hematopoietic stem cell patients editor letter introduction: open questions in roboethics john p. sullins published online: august # springer-verlag the rise of the robotethicist roboethics is the recent offshoot of computer ethics that pays special attention to the alterations that need to be made to computer ethics when we give the computer mobility and a means to interact directly in the human environment. the closely related field of machine morality explores how ethical systems and behaviors may be programmed into social robotics applications. as robots move from the factory floor into our homes and work lives, they stand to change key aspects of the way our lives are lived. in order to be successful, these machines must be programmed with the ability to navigate the human life world without committing ethical faux pas or moral outrage. thus, the roboethicist is tasked not only with critiquing the attempts of robots engineers to achieve the integration of these machines into our life world, but also, and more importantly, with suggesting means of achieving better results than what is presently on offer. the undeniable roots of roboethics begin in the world of science fiction. the very coining of the word “robot” in karel Čapek’s play, rur, is loaded with ethical import. the czech word “robota” refers to labor or servitude, which gives us the uncomfortable inference that roboethics refers to a kind of slave ethics. i reject this connotation and it is just an unfortunate byproduct from the literary trope of the robot rebellion that Čapek began with his play and fritz lang masterfully solidified in the human psyche with his film metropolis, something which hollywood has been reiterating ever since. there is no need to reenact this unfortunate future in reality. as the great science fiction writer philip k. dick once observed, the duty of science fiction is to imagine dystopian futures so that we don’t actually have to live them. with this in mind, we can then see that the job of the roboethicist is not simply science fiction, it is instead to help avoid the imagined robo-apocalypse and help build an alternative future where robots are not resentful slaves or out of control killing machines, but instead more like pets and perhaps someday even friends or possibly, in the very far future, even colleagues. in the near future, the job of the philos. technol. ( ) : – doi . /s - - - j. p. sullins (*) sonoma state university, east cotati aveune, rohnert park, ca , usa e-mail: john.sullins@sonoma.edu roboethicist is to ensure that we do not harm each other too deeply with these machines as they grow in complexity and capability. gianmarco veruggio seems to have coined the term “roboethics” in at the first roboethics workshop organized around an ieee robotics conference. at that time, it was decided to separate the field into two allied subfields. one is machine ethics or machine morality, which is concerned with describing how machines could behave ethically towards humans. the other is roboethics itself, which is concerned with how humans relate to these machines in both the design and use phase of their operation. in the last years though, these terms have drifted a bit and you will hear expressions such as “machine ethics,” “machine morality,” “roboethics,” “robot ethics,” and “moral machines” all used somewhat synonymously to refer to the ethical concerns raised by robotics technologies. since that time there have been numerous articles printed, workshops and conference tracks organized, special issues of journals, blogs and facebook groups formed, as well as a few important book projects. but there is much left to do and it is my purpose here to try to interest more people to join this growing area of research. robotics technology’s move into the home is roughly where the personal computer was in the ’s. if such trend continues, then we can expect personal robotics and military robotics to move quickly into the home, workplace and battlefield. it is therefore our duty to stay ahead of that curve in order to anticipate and help alleviate the ethical impacts of these technologies. one further conceptual complexity needs to be mentioned here as well. robots come in two broad categories, autonomous and non-autonomous. roughly speaking, “autonomy” typically refers to the level of human control and oversight over the robot’s actions and decisions. when one speaks of “autonomous robots,” one is generally not making any strong claim regarding the philosophical free will of the machine. it is simply the acknowledgement that autonomous robots make the majority of their decisions using computational systems, whereas non-autonomous or telerobots have at least some human oversight and input into the decisions they make. while the media has us all used to the idea of autonomous robots, as it turns out they are very difficult to make and so the robots we see in use today are all largely telerobots. therefore roboethicists should focus a bit more on how telerobots alter the ethical thinking of their users since machines making autonomous ethical decisions are still only a theoretical possibility. open questions in roboethics as roboethics is a young field of study, there are many interesting open questions and subfields of study. my list here is not meant to be exhaustive but it is what i believe to be the most interesting at this time. it is possible that the term was used prior to this date but the workshop is certainly where the term became more widely used. there is more complexity in the case of machines that house the majority of their artificial intelligence capabilities in a remote machine and then teleoperate a drone or drones of some type. i will gloss over this here and just treat these machine architectures as autonomous robots for now. j.p. sullins . military applications this is by far the most important of the subfields of roboethics. it would have been preferable had we worked through all the problems of programming a robot to think and act ethically before we had them make life and death decisions, but it looks like that is not to be. while teleoperated weapons systems have been used experimentally since the second world war, there are now thousands of robotic weapons systems deployed all over the world in every advanced military organization and in an ad hoc way by rebel forces in the middle east (singer ). some of the primary ethical issues to be address here revolve around the application of just war theory. can these weapons be used ethically by programing rules of warfare, the law of war and just war theory into the machine itself? perhaps machines so programmed would make the battlefield a much more ethically constrained space? how should they be built and programmed to help war fighters make sound and ethical decisions on the battlefield? do they lower the bar to entry into conflict too low? will politicians see them as easy ways to wage covert wars on a nearly continuous level? in an effort to keep the soldier away from harm, will we in fact bring the war to our own front door as soldiers telecommute to the battlefield? what happens as these systems become more autonomous? is it reasonable to claim that humans will always be “in” or “on the loop” as a robot decides to use lethal force? . privacy robots need data to operate. in the course of collecting, data they will collect some that people may not want shared but which the machine needs nonetheless to operate. there will be many tricky conundrums that have to be solved as more and more home robotics applications evolve. for instance, if we imagine a general- purpose household robot of the reasonably near future, how much data of the family’s day-to-day life should it store? who owns that data? might that data be used in divorce or custody settlements? will the robot be another entry for directed marketing to enter the home? . robotic ethical awareness how does a machine determine if it is in an ethically charged situation? and assuming it can deal with that problem, which ethical system should it use to help make its decision? philosophers such as john dewey and later mario bunge have argued that a technology of ethics is possible and in some ways preferable (sullins ). i am certain they were not thinking of robots when they made these arguments, but their view that ethics is transactional and instrumental allow us to extend their ideas to the claim that ethics is computational. thus, it is not out of the question that machine ethics is possible. yet we are sorely lacking on the specifics needed to make any of these claims anything more than theoretical. engineers are wonderfully opportunistic and do not tend to have emotional commitments to this or that school of thought in ethics. therefore, what we see occurring today is that they tend to make a pastiche of the ethical theories that are on offer in philosophy and pick and choose the aspects of each theory that seem to work and deliver real results. introduction: open questions in roboethics . affective robotics personal robots need to be able to act in a friendly and inviting way. this field is often called social robotics, sociable robotics, or affective computing, and was largely the brainchild of cynthia breazeal, from the massachusetts institute of technology (mit) robotics lab ( ). the interesting ethical question here is: if your robot acts like your friend, is it really your friend? perhaps that distinction does not even matter? with sociable robotics, the machine looks for subtle clues gathered from facial expression, body language, perhaps heat signatures or other biometrics and uses this data to ascertain the user’s emotional state. the machine then alters its behavior to suit the emotional situation and hopefully make the user feel more comfortable with the machine. if we come to accept this simulacrum of friendship, will this degrade our ability to form friendship with other humans? we might begin to prefer the company of machines. . sex tobots it seems strange but it is true that there are already semiresponsive sex dolls that do count as a minor type of robot. these machines are such a tantalizing dream for some roboticists that there is little doubt that this industry will continue to grow. this category of robotics supercharges the worries raised by affective robotics and adds a few more. sociable robots examine the user biometrics so the robot can elicit friendly relations, but here the robot examines biometrics to elicit sexual relations. a sex robot is manipulating very strong emotions and if we thought video games were addictive, then imagine what kind of behavior might be produced by a game consul with which one could have sex. these machines are likely to remain on the fringe of society for some time, but the roboticist david levy has argued that since this technology can fulfill so many of our dreams and desires, it is inevitable that it will make deep market penetration and eventually will be widespread in our society (levy ). this will result in many situations that will run the spectrum from tragic, to sad, to humorous. the key point here is: whether the machines can really be filled with love and grace or whether we are just fooling ourselves with incredibly expensive and expressive love dolls. i can easily grant that engineers can build a machine with which many would like to have sex, but can they build a machine that delivers the erotic in a philosophical sense? can they build a machine that can make us a better person for having made love to it? . carebots somewhat related to the above are carebots. these machines are meant to provide primary or secondary care to children, the elderly and medical patients. there are already a number of these machines, such as the paro robot, in service around the world. on one end of the scale, one has something like paro, a robot that is meant to provide artificial pet therapy for its users. towards the middle of the scale, one would have machines built to assist medical caregivers in lifting and moving patients or helping to monitor their medications or just to check in with patients during their stay. at the far end of the scale, one would have autonomous or semi-autonomous machines that would have nearly full responsibility in looking after children or the elderly in a home setting. here again, we have some of the same issues raised by social robotics and the j.p. sullins concomitant privacy issues. but in addition to those you have the troubling problem of why other humans are not taking care of their own children and elderly. what kind of society are we creating where we wish to outsource these important human relations to a machine allowing younger generations to simply ignore the elderly? . medibots these are related to carebots but i am specifically thinking here of robots that assist in surgery and other life and death medical practices such as administering medication. often, the surgeons using these machines are close by the operating theater, but this technology is also used to allow a surgeon to work on a patient many thousands of miles away. this technology can be useful when dealing with a wounded soldier on a distant battlefield or a patient with serious conditions who is living in remote or economically depressed places of the world. this technology puts a new wrinkle on many of the standard medical ethics issues and we need more medical ethicists to study this phenomenon in depth. . autonomous vehicles our roadways could change in a very radical way. autos and large transportation vehicles of the near future may have no human driver. already some luxury vehicles will take over in emergency breaking situations or when the driver falls asleep at the wheel. a number of autos will park themselves completely autonomously. the vast majority of the ethical issues involved here will be legal in nature, but there will also be issues of trust involved. for instance, can one trust a vehicle to make the right decisions when those decisions mean the lives of you, your family and all those around you? there have already been deaths caused by faulty automatic navigation services because people robotically follow the directions of the gps machine no matter what it says, even if it is giving incorrect directions that lead one into dangerous situations. . attribution of moral blame this is one of the biggest conundrums in roboethics. nearly all moral systems have some way of assessing which moral agent involved in a system is to blame when things go wrong. most humans respond to blame and punishment and might modify their behavior to avoid it when possible. but how does one blame a machine? will people use robots as proxies for the bad behavior in order to remove themselves from blame? when a military robot kills an innocent civilian, who is to blame? if you are asleep in your robotic car and it runs down a pedestrian, did you commit manslaughter or are you just an innocent bystander? . environmental robotics there are two ways to look at the environmental ethics impacts of robotics. one is to look at the impact of the manufacture, use and disposal of robots. currently, there is no green robotics movement and we should push for this to be developed. a second introduction: open questions in roboethics interesting idea is that robotics could provide an invaluable tool for gathering data about environmental change. the very same robots that are used to monitor enemy troops and scour the ocean floor for enemy activity can be easily re-tasked to monitor forests, ocean ecosystems, protect whale and dolphins or any number of environmental tasks that unaided humans find difficult. robotics, war and peace this special issue is an attempt to advance our understanding of the many issues raised above. the articles collected here represent some of the very best thought on these subjects. i would like to thank the many referees who worked on this project; their unsung efforts ensured that this issue is a valuable contribution to the growing scholarship on the ethical impacts of robotics technology. robotics and warfare dominates the conversation at this time but it is my sincere hope that the many conflicts that plague our world can diminish and we can move to the study of more peaceful applications of this fascinating technology. references breazeal, c. ( ). designing sociable robots. cambridge, ma: the mit press. levy, d. ( ). love and sex with robots, the evolution of human–robot relationships. harper/harpercollins: new york, usa. singer, p. w. ( ). wired for war. new york: penguin press hc. sullins, j. ( ). artificial moral agency in technoethics. in r. luppicini & r. adell (eds.), handbook of research on technoethics. new york: igi global. j.p. sullins 	introduction: open questions in roboethics 	the rise of the robotethicist 	open questions in roboethics 	military applications 	privacy 	robotic ethical awareness 	affective robotics 	sex tobots 	carebots 	medibots 	autonomous vehicles 	attribution of moral blame 	environmental robotics 	robotics, war and peace 	references cir .. i d s a g u i d e l i n e s clinical practice guideline for the use of antimicrobial agents in neutropenic patients with cancer: update by the infectious diseases society of america alison g. freifeld, eric j. bow, kent a. sepkowitz, michael j. boeckh, james i. ito, craig a. mullen, issam i. raad, kenneth v. rolston, jo-anne h. young, and john r. wingard department of medicine, university of nebraska medical center, omaha, nebraska; department of medicine, memorial sloan-kettering cancer center, new york; department of pediatrics, university of rochester medical center, rochester, new york; vaccine and infectious disease division, fred hutchinson cancer research, seattle, washington; division of infectious diseases, city of hope national medical center, duarte, california; department of infectious diseases, infection control and employee health, the university of texas m.d. anderson cancer center, houston, texas; department of medicine, university of minnesota, minneapolis, minnesota; division of hematology/oncology, university of florida, gainesville, florida; and departments of medical microbiology and internal medicine, the university of manitoba, and infection control services, cancer care manitoba, winnipeg, manitoba, canada this document updates and expands the initial infectious diseases society of america (idsa) fever and neutropenia guideline that was published in and first updated in . it is intended as a guide for the use of antimicrobial agents in managing patients with cancer who experience chemotherapy-induced fever and neutropenia. recent advances in antimicrobial drug development and technology, clinical trial results, and extensive clinical experience have informed the approaches and recommendations herein. because the previous iteration of this guideline in , we have a developed a clearer definition of which populations of patients with cancer may benefit most from antibiotic, antifungal, and antiviral prophylaxis. furthermore, categorizing neutropenic patients as being at high risk or low risk for infection according to presenting signs and symptoms, underlying cancer, type of therapy, and medical comorbidities has become essential to the treatment algorithm. risk stratification is a recommended starting point for managing patients with fever and neutropenia. in addition, earlier detection of invasive fungal infections has led to debate regarding optimal use of empirical or preemptive antifungal therapy, although algorithms are still evolving. what has not changed is the indication for immediate empirical antibiotic therapy. it remains true that all patients who present with fever and neutropenia should be treated swiftly and broadly with antibiotics to treat both gram-positive and gram-negative pathogens. finally, we note that all panel members are from institutions in the united states or canada; thus, these guidelines were developed in the context of north american practices. some recommendations may not be as applicable outside of north america, in areas where differences in available antibiotics, in the predominant pathogens, and/or in health care–associated economic conditions exist. regardless of venue, clinical vigilance and immediate treatment are the universal keys to managing neutropenic patients with fever and/or infection. executive summary fever during chemotherapy-induced neutropenia may be the only indication of a severe underlying infection, because signs and symptoms of inflammation typically are attenuated. physicians must be keenly aware of the infection risks, diagnostic methods, and antimicrobial therapies required for management of febrile patients through the neutropenic period. accordingly, algorith- mic approaches to fever and neutropenia, infection prophylaxis, diagnosis, and treatment have been received october ; accepted november . correspondence: alison g. freifeld, md, immunocompromised host program, dept of medicine, university of nebraska medical center, omaha, ne - (afreifeld@unmc.edu). clinical infectious diseases ; ( ):e –e � the author . published by oxford university press on behalf of the infectious diseases society of america. all rights reserved. for permissions, please e-mail:journals.permissions@oup.com. - / / - $ . doi: . /cid/cir e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ established during the past years, guided and modified by clinical evidence and experience over time. the infectious diseases society of america fever and neu- tropenia guideline aims to provide a rational summation of these evolving algorithms. summarized below are the recom- mendations made in the guideline update. a detailed description of the methods, background, and evidence sum- maries that support each of the recommendations can be found in the full text of the guideline. guideline recommendations for the evaluation and treatment of patients with fever and neutropenia i. what is the role of risk assessment and what distinguishes high-risk and low-risk patients with fever and neutropenia? recommendations . assessment of risk for complications of severe infection should be undertaken at presentation of fever (a-ii). risk assessment may determine the type of empirical antibiotic therapy (oral vs intravenous [iv]), venue of treatment (inpatient vs outpatient), and duration of antibiotic therapy (a-ii). . most experts consider high-risk patients to be those with anticipated prolonged (. days duration) and profound neutropenia (absolute neutrophil count [anc] < cells/ mm following cytotoxic chemotherapy) and/or significant medical co-morbid conditions, including hypotension, pneumonia, new-onset abdominal pain, or neurologic changes. such patients should be initially admitted to the hospital for empirical therapy (a-ii). . low-risk patients, including those with anticipated brief (< days duration) neutropenic periods or no or few co- morbidities, are candidates for oral empirical therapy (a-ii). . formal risk classification may be performed using the multinational association for supportive care in cancer (mascc) scoring system (b-i). i. high-risk patients have a mascc score , (b-i). all patients at high risk by mascc or by clinical criteria should be initially admitted to the hospital for empirical antibiotic therapy if they are not already inpatients (b-i). ii. low-risk patients have a mascc score > (b-i). carefully selected low-risk patients may be candidates for oral and/or outpatient empirical antibiotic therapy (b-i). ii. what specific tests and cultures should be performed during the initial assessment? recommendations . laboratory tests should include a complete blood cell (cbc) count with differential leukocyte count and platelet count; measurement of serum levels of creatinine and blood urea nitrogen; and measurement of electrolytes, hepatic transaminase enzymes, and total bilirubin (a-iii). . at least sets of blood cultures are recommended, with a set collected simultaneously from each lumen of an existing central venous catheter (cvc), if present, and from a peripheral vein site; blood culture sets from separate venipunctures should be sent if no central catheter is present (a-iii). blood culture volumes should be limited to , % of total blood volume (usually � ml/kg) in patients weighing , kg (c-iii). . culture specimens from other sites of suspected infection should be obtained as clinically indicated (a-iii). . a chest radiograph is indicated for patients with respiratory signs or symptoms (a-iii). iii. in febrile patients with neutropenia, what empiric antibiotic therapy is appropriate and in what venue? recommendations general considerations . high-risk patients require hospitalization for iv empirical antibiotic therapy; monotherapy with an anti- pseudomonal b-lactam agent, such as cefepime, a carbapenem (meropenem or imipenem-cilastatin), or piperacillin-tazobactam, is recommended (a-i). other antimicrobials (aminoglycosides, fluoroquinolones, and/or vancomycin) may be added to the initial regimen for management of complications (eg, hypotension and pneumonia) or if antimicrobial resistance is suspected or proven (b-iii). . vancomycin (or other agents active against aerobic gram- positive cocci) is not recommended as a standard part of the initial antibiotic regimen for fever and neutropenia (a-i). these agents should be considered for specific clinical indications, including suspected catheter-related infection, skin or soft-tissue infection, pneumonia, or hemodynamic instability. . modifications to initial empirical therapy may be considered for patients at risk for infection with the following antibiotic-resistant organisms, particularly if the patient’s condition is unstable or if the patient has positive blood culture results suspicious for resistant bacteria (b-iii). these include methicillin-resistant staphylococcus aureus (mrsa), vancomycin-resistant enterococcus (vre), extended-spectrum b-lactamase (esbl)–producing gram-negative bacteria, and carbapenemase-producing organisms, including klebsiella pneumoniae carbapenemase (kpc). risk factors include previous infection or colonization with the organism and treatment in a hospital with high rates of endemicity. i. mrsa: consider early addition of vancomycin, linezolid, or daptomycin (b-iii). ii. vre: consider early addition of linezolid or daptomycin (b-iii). clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ iii. esbls: consider early use of a carbapenem (b-iii). iv. kpcs: consider early use of polymyxin-colistin or tigecycline (c-iii). . most penicillin-allergic patients tolerate cephalosporins, but those with a history of an immediate-type hypersensitivity reaction (eg, hives and bronchospasm) should be treated with a combination that avoids b-lactams and carbapenems, such as ciprofloxacin plus clindamycin or aztreonam plus vancomycin (a-ii). . afebrile neutropenic patients who have new signs or symptoms suggestive of infection should be evaluated and treated as high-risk patients (b-iii). . low-risk patients should receive initial oral or iv empirical antibiotic doses in a clinic or hospital setting; they may be transitioned to outpatient oral or iv treatment if they meet specific clinical criteria (a-i). i. ciprofloxacin plus amoxicillin-clavulanate in combination is recommended for oral empirical treatment (a-i). other oral regimens, including levofloxacin or ciprofloxacin monotherapy or ciprofloxacin plus clindamycin, are less well studied but are commonly used (b-iii). ii. patients receiving fluoroquinolone prophylaxis should not receive oral empirical therapy with a fluoroquinolone (a-iii). iii. hospital re-admission or continued stay in the hospital is required for persistent fever or signs and symptoms of worsening infection (a-iii). iv. when and how should antimicrobials be modified during the course of fever and neutropenia? recommendations . modifications to the initial antibiotic regimen should be guided by clinical and microbiologic data (a-ii). . unexplained persistent fever in a patient whose condition is otherwise stable rarely requires an empirical change to the initial antibiotic regimen. if an infection is identified, antibiotics should be adjusted accordingly (a-i). . documented clinical and/or microbiological infections should be treated with antibiotics appropriate for the site and for the susceptibilities of any isolated organisms (a-i). . if vancomycin or other coverage for gram-positive organisms was started initially, it may be stopped after days if there is no evidence for a gram-positive infection (a-ii). . patients who remain hemodynamically unstable after initial doses with standard agents for neutropenic fever should have their antimicrobial regimen broadened to include coverage for resistant gram-negative, gram-positive, and anaerobic bacteria and fungi (a-iii). . low-risk patients who have initiated iv or oral antibiotics in the hospital may have their treatment approach simplified if they are clinically stable (a-i). i. an iv-to-oral switch in antibiotic regimen may be made if patients are clinically stable and gastrointestinal absorption is felt to be adequate (a-i). ii. selected hospitalized patients who meet criteria for being at low risk may be transitioned to the outpatient setting to receive either iv or oral antibiotics, as long as adequate daily follow-up is ensured (b-iii). if fever persists or recurs within h in outpatients, hospital re-admission is recommended, with management as for high-risk patients (a-iii). . empirical antifungal coverage should be considered in high-risk patients who have persistent fever after – days of a broad-spectrum antibacterial regimen and no identified fever source (a-ii). v. how long should empirical antibiotic therapy be given? recommendations . in patients with clinically or microbiologically documented infections, the duration of therapy is dictated by the particular organism and site; appropriate antibiotics should continue for at least the duration of neutropenia (until anc is > cells/mm ) or longer if clinically necessary (b-iii). . in patients with unexplained fever, it is recommended that the initial regimen be continued until there are clear signs of marrow recovery; the traditional endpoint is an increasing anc that exceeds cells/mm (b-ii). . alternatively, if an appropriate treatment course has been completed and all signs and symptoms of a documented infection have resolved, patients who remain neutropenic may resume oral fluoroquinolone prophylaxis until marrow recovery (c-iii). vi. when should antibiotic prophylaxis be given, and with what agents? recommendations . fluoroquinolone prophylaxis should be considered for high-risk patients with expected durations of prolonged and profound neutropenia (anc < cells/mm for . days) (b- i). levofloxacin and ciprofloxacin have been evaluated most comprehensively and are considered to be roughly equivalent, although levofloxacin is preferred in situations with increased risk for oral mucositis-related invasive viridans group streptococcal infection. a systematic strategy for monitoring the development of fluoroquinolone resistance among gram- negative bacilli is recommended (a-ii). . addition of a gram-positive active agent to fluoroquinolone prophylaxis is generally not recommended (a-i). . antibacterial prophylaxis is not routinely recommended for low-risk patients who are anticipated to remain neutropenic for , days (a-iii). e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ vii. what is the role of empirical or pre-emptive antifungal therapy and which antifungal should be used? recommendations high risk . empirical antifungal therapy and investigation for invasive fungal infections should be considered for patients with persistent or recurrent fever after – days of antibiotics and whose overall duration of neutropenia is expected to be . days (a-i). data are insufficient to recommend a specific empirical antifungal agent for a patient already receiving anti- mold prophylaxis, but switching to a different class of anti- mold antifungal that is given intravenously should be considered (b-iii). . preemptive antifungal management is acceptable as an alternative to empirical antifungal therapy in a subset of high- risk neutropenic patients. those who remain febrile after – days of broad-spectrum antibiotics but are clinically stable, have no clinical or chest and sinus computed tomography (ct) signs of fungal infection, have negative serologic assay results for evidence of invasive fungal infection, and have no recovery of fungi (such as candida or aspergillus species) from any body site may have antifungal agents withheld (b-ii). antifungal therapy should be instituted if any of these indicators of possible invasive fungal infection are identified. low risk . in low-risk patients, the risk of invasive fungal infection is low, and therefore routine use of empirical antifungal therapy is not recommended (a-iii). viii. when should antifungal prophylaxis be given and with what agents? recommendations high risk . prophylaxis against candida infection is recommended in patient groups in whom the risk of invasive candidal infection is substantial, such as allogeneic hematopoietic stem cell transplant (hsct) recipients or those undergoing intensive remission-induction or salvage-induction chemotherapy for acute leukemia (a-i). fluconazole, itraconazole, voriconazole, posaconazole, micafungin, and caspofungin are all acceptable alternatives. . prophylaxis against invasive aspergillus infections with posaconazole should be considered for selected patients > years of age who are undergoing intensive chemotherapy for acute myeloid leukemia (aml) or myelodysplastic syndrome (mds) in whom the risk of invasive aspergillosis without prophylaxis is substantial (b-i). . prophylaxis against aspergillus infection in pre- engraftment allogeneic or autologous transplant recipients has not been shown to be efficacious. however, a mold-active agent is recommended in patients with prior invasive aspergillosis (a-iii), anticipated prolonged neutropenic periods of at least weeks (c-iii), or a prolonged period of neutropenia immediately prior to hsct (c-iii). low risk . antifungal prophylaxis is not recommended for patients in whom the anticipated duration of neutropenia is , days (a-iii). ix. what is the role of antiviral prophylaxis and what virus infections require antiviral treatment? recommendations . herpes simplex virus (hsv)–seropositive patients undergoing allogeneic hsct or leukemia induction therapy should receive acyclovir antiviral prophylaxis (a-i). . antiviral treatment for hsv or varicella-zoster virus (vzv) infection is only indicated if there is clinical or laboratory evidence of active viral disease (c-iii). . respiratory virus testing (including testing for influenza, parainfluenza, adenovirus, respiratory syncytial virus [rsv], and human metapneumovirus) and chest radiography are indicated for patients with upper respiratory symptoms (eg, coryza) and/or cough (b-iii). . yearly influenza vaccination with inactivated vaccine is recommended for all patients being treated for cancer (a-ii). optimal timing of vaccination is not established, but serologic responses may be best between chemotherapy cycles (. days after the last treatment) or . weeks before chemotherapy starts (b-iii). . influenza virus infection should be treated with neuraminidase inhibitors if the infecting strain is susceptible (a-ii). in the setting of an influenza exposure or outbreak, neutropenic patients presenting with influenza-like illness should receive treatment empirically (c-iii). . routine treatment of rsv infection in neutropenic patients with upper respiratory disease should not be given (b-iii). x. what is the role of hematopoietic growth factors (g-csf or gm-csf) in managing fever and neutropenia? recommendations . prophylactic use of myeloid colony-stimulating factors (csfs; also referred to as hematopoietic growth factors) should be considered for patients in whom the anticipated risk of fever and neutropenia is > % (a-ii). . csfs are not generally recommended for treatment of established fever and neutropenia (b-ii). clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ xi. how are catheter-related infections diagnosed and managed in neutropenic patients? recommendation . differential time to positivity (dtp) . min of qualitative blood cultures performed on specimens simultaneously drawn from the cvc and a vein suggests a central line–associated blood stream infection (clabsi) (a-ii). . for clabsi caused by s. aureus, p. aeruginosa, fungi, or mycobacteria, catheter removal is recommended in addition to systemic antimicrobial therapy for at least days (a-ii). catheter removal is also recommended for tunnel infection or port pocket site infection, septic thrombosis, endocarditis, sepsis with hemodynamic instability, or bloodstream infection that persists despite > h of therapy with appropriate antibiotics (a-ii). . for documented clabsi caused by coagulase-negative staphylococci, the catheter may be retained using systemic therapy with or without antibiotic lock therapy (b-iii). . prolonged treatment ( – weeks) is recommended for complicated clabsi, defined as the presence of deep tissue infection, endocarditis, septic thrombosis (a-ii) or persistent bacteremia or fungemia occurring . h after catheter removal in a patient who has received appropriate antimicrobials (a-ii for s. aureus, c-iii for other pathogens). . hand hygiene, maximal sterile barrier precautions, and cutaneous antisepsis with chlorhexidine during cvc insertion are recommended for all cvc insertions (a-i). xii. what environmental precautions should be taken when managing febrile neutropenic patients? recommendations . hand hygiene is the most effective means of preventing transmission of infection in the hospital (a-ii). . standard barrier precautions should be followed for all patients, and infection-specific isolation should be used for patients with certain signs or symptoms (a-iii). . hsct recipients should be placed in private (ie, single- patient) rooms (b-iii). allogeneic hsct recipients should be placed in rooms with . air exchanges/h and high-efficiency particulate air (hepa) filtration (a-iii). . plants and dried or fresh flowers should not be allowed in the rooms of hospitalized neutropenic patients (b-iii). . hospital work exclusion policies should be designed to encourage health care workers (hcws) to report their illnesses or exposures (a-ii). introduction this guideline provides a general approach to the management of patients with cancer who have neutropenia and present with fever, and it gives special attention to antimicrobial management. it updates the idsa document that was last revised in [ ]. fever: etiology and epidemiology fever occurs frequently during chemotherapy-induced neu- tropenia: %– % of patients with solid tumors and . % of those with hematologic malignancies will develop fever during > chemotherapy cycle associated with neutropenia [ ]. most patients will have no infectious etiology documented. clinically documented infections occur in %– % of febrile episodes; common sites of tissue-based infection include the intestinal tract, lung, and skin. bacteremia occurs in %– % of all pa- tients, with most episodes occurring in the setting of prolonged or profound neutropenia (anc, , neutrophils/mm ) [ – ]. substantial fluctuation in the epidemiologic spectrum of bloodstream isolates obtained from febrile neutropenic patients has occurred over the past years. early in the development of cytotoxic chemotherapy, during the s and s, gram- negative pathogens predominated. then, during the s and s, gram-positive organisms became more common (table ) [ – ] because of increased use of indwelling plastic venous catheters, which can allow for colonization by and entry of gram-positive skin flora [ , ]. currently, coagulase-negative staphylococci are the most common blood isolates in most centers; enterobacteriaciae (eg, enterobacter species, escherichia coli and klebsiella species) and nonfermenting gram-negative rods (eg, pseudomonas aeruginosa and stenotrophomonas spe- cies) are isolated less often. drug-resistant gram-negative bacteria species are causing an increasing number of infections in febrile neutropenic patients [ , – ]. in some centers, this has led to an epidemiologic trend toward a predominance of gram-negative pathogens in the neutropenic population [ , – ]. esbl genes, acquired primarily among klebsiella species and e. coli strains, confer a broad range of b-lactam antibiotic resistance [ – ]. these esbl pathogens are often only susceptible to table . common bacterial pathogens in neutropenic patients common gram-positive pathogens coagulase-negative staphylococci staphylococcus aureus, including methicillin-resistant strains enterococcus species, including vancomycin-resistant strains viridans group streptococci streptococcus pneumoniae streptococcus pyogenes common gram-negative pathogens escherichia coli klebsiella species enterobacter species pseudomonas aeruginosa citrobacter species acinetobacter species stenotrophomonas maltophilia e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ carbapenems, such as imipenem or meropenem. carbapenemase- producing isolates of klebsiella species and p. aeruginosa have been reported to cause infections that are resistant to carbapenems [ ]. recognition of these resistant species requires careful in- terpretation of organism-specific antibiograms [ – ]. in addition, resistant gram-positive pathogens, such as mrsa and vre, have become more common and are the most prev- alent resistant isolates in some centers, accounting for % and slightly . % of episodes, respectively [ – ]. penicillin- resistant strains of s. pneumoniae and of viridans group strep- tococci are less common but may cause severe infections [ ]. the bacterial pathogens that cause most bloodstream infections in the setting of neutropenia are listed in table . fungi are rarely identified as the cause of first fever early in the course of neutropenia; rather, they are encountered after the first week of prolonged neutropenia and empirical antibiotic therapy. yeasts, primarily candida species, may cause superficial infections of mucosal surfaces (eg, thrush); chemotherapy- induced mucositis, in turn, may disrupt this barrier [ ], allowing candida to enter the bloodstream. deep-tissue candidiasis, such as hepatic or hepatosplenic disease, esophagitis, or endocarditis, is much less common. molds, such as aspergillus, are most likely to cause life-threatening infection of the sinuses and lungs, typically after > weeks of neutropenia. the majority of patients who develop fever during neu- tropenia have no identifiable site of infection and no positive culture results. nonetheless, the panel recommends that every patient with fever and neutropenia receive empirical antibiotic therapy urgently (ie, within h) after presentation, because infection may progress rapidly in these patients. in the febrile neutropenic patient, substantially better outcomes can be ex- pected with prompt initiation of the critical management pathways discussed in this document [ ]. definitions the definitions of fever and neutropenia in this guideline are general criteria that should be used to identify patients in whom empirical antibiotic therapy must be initiated. however, these definitions are not hard-and-fast rules. clinical variations among patients mandate that clinical judgment play a critical role in identifying which patients require antibiotics during the risk period of neutropenia, even if those patients do not meet these specific definitions. ¤ fever fever is defined as a single oral temperature measurement of > . �c ( �f) or a temperature of > . �c ( . �f) sus- tained over a -h period. use of axillary temperatures is discouraged, because they may not accurately reflect core body temperature. rectal temperature measurements (and rectal examinations) are avoided during neutropenia to prevent colonizing gut organisms from entering the surrounding mucosa and soft tissues. ¤ neutropenia neutropenia is defined as an anc of , cells/mm or an anc that is expected to decrease to , cells/mm during the next h. the term ‘‘profound’’ is sometimes used to describe neu- tropenia in which the anc is , cells/mm ; a manual reading of the blood smear is required to confirm this degree of neu- tropenia. the term ‘‘functional neutropenia’’ refers to patients whose hematologic malignancy results in qualitative defects (impaired phagocytosis and killing of pathogens) of circulating neutrophils. these patients should also be considered to be at increased risk for infection, despite a ‘‘normal’’ neutrophil count. the primary aim of the practice guideline is to assist practi- tioners in making decisions about appropriate care for neu- tropenic patients who present with signs and symptoms of potentially serious infections [ ]. the recommendations are derived from well-tested patterns of clinical practice that have emerged from cancer therapy clinical trials; modifications of these recommendations are based upon careful review of data from recent scientific publications and peer-reviewed in- formation whenever possible. when evidence-based recom- mendations cannot be made because of insufficient data, the panel has provided guidance that is based on the consensus of its members, all of whom have extensive experience in the treat- ment of neutropenic patients. for example, it is recommended by panel members that neutropenic patients who are not febrile but who have new signs or symptoms that suggest infection have empirical antibiotics initiated. during fever and neutropenia, no specific drug or combination of drugs and no specific period of treatment can be unequivocally recommended for all patients. rather, the recommendations outlined in these guidelines are generally applicable in most clinical situations but, in some instances, will require mod- ifications according to circumstances and local epidemiologic data. for management of most patients, the panel recommends involvement of an infectious diseases specialist knowledgeable about infections of the immunocompromised host. it is also essential that an antimicrobial stewardship program be in place at facilities where patients with cancer are routinely treated, to ensure appropriated and judicious antimicrobial use. a major change in the current guideline is a more structured consideration of the level of risk for serious infectious compli- cations that a given patient with fever and neutropenia might face. this recognition of the differences in patients’ levels of risk (low risk and high risk) during the febrile neutropenic period directs all recommendations regarding evaluation, therapy, venue of therapy, and prophylaxis. prevention of infection in neutropenic patients is also an important focus of this guideline. the bacterial, viral, and fungal clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ prophylaxis recommendations herein reflect the panel’s inter- pretations of clinical trial results. however, as newer drugs and newer methods of delivery are developed, approaches to pro- phylaxis will evolve. whatever new approaches may be de- veloped, the central issue of prophylaxis remains unchanged: a balance must be struck between effective infection prevention and the risk of antimicrobial-resistant infections caused by overuse of antibiotics. finally, these guidelines contain new sections on the man- agement of indwelling cvcs and environmental precautions for neutropenic patients. the following clinical questions are addressed in the guideline: i. what is the role of risk assessment and what distinguishes high-risk and low-risk patients with fever and neutropenia? ii. what cultures should be collected and what specific tests should be performed during the initial assessment? iii. in febrile patients with neutropenia, what empirical antibiotic therapy is appropriate and in what setting? iv. when and how should antimicrobials be modified during the course of fever and neutropenia? v. how long should empirical antibiotic therapy be given? vi. when should antibiotic prophylaxis be given and with what agents? vii. what is the role of empirical antifungal therapy and what antifungals should be used? viii. when should antifungal prophylaxis or preemptive therapy be given and with what agents? ix. what is the role of antiviral prophylaxis and how are respiratory viruses diagnosed and managed in the neutropenic patient? x. what is the role of hematopoietic growth factors (g-csf or gm-csf) in managing fever and neutropenia? xi. how are catheter-related infections diagnosed and managed in neutropenic patients? xii. what environmental precautions should be taken when managing febrile neutropenic patients? update methodology panel composition the idsa standards and practice guidelines committee re- convened many members of the original guideline panel, together with additional experts in the management of patients with fever and neutropenia. the panel included experts in infectious dis- eases, oncology, and hsct in both adult and pediatric patients. the panel members are listed as authors of this document. process overview in evaluating the evidence regarding the management of patients with fever and neutropenia, the panel used a systematic weighting of the level and grade of the evidence for making a recommendation (table ) [ ]. literature review and analysis for the update, the panel completed the review and analysis of data published since . computerized literature searches of the pubmed database were performed. the searches of the english-language literature from through july combined the terms ‘‘antibiotics’’ and ‘‘fever’’ and ‘‘neutropenia.’’ data published after july were also considered in the final preparation of the manuscript. the searches were limited to human-only studies and to specific study design or publication type: clinical trial, randomized clinical trial, meta-analysis, or practice guideline. guidelines and conflict of interest all members of the panel complied with the idsa policy on conflicts of interest, which requires disclosure of any financial or other interest that might be construed as constituting an actual, potential, or apparent conflict. members of the panel completed the idsa conflict of interest disclosure statement and were asked to identify ties to companies developing products that might be affected by promulgation of the guideline. information was re- quested regarding employment, consultancies, stock ownership, honoraria, research funding, expert testimony, and membership on company advisory committees. the panel made decisions on a case-by-case basis as to whether an individual’s role should be limited as a result of a conflict. no limiting conflicts were identified. consensus development based on evidence the panel met on . occasions via teleconference (including subgroup calls) and once in person to complete the work of the guideline. the purpose of the teleconferences was to discuss the questions, distribute writing assignments, and finalize recom- mendations. all members of the panel participated in the preparation and review of the draft guideline. feedback from external peer reviews was obtained. the guideline was reviewed and approved by the idsa standards and practice guidelines committee and the board of directors prior to dissemination. revision dates at annual intervals, the panel chair, the liaison advisor, and the chair of the standards and practice guidelines committee will determine the need for revisions to the updated guideline on the basis of an examination of the current literature. if necessary, the entire panel will reconvene to discuss potential changes. when appropriate, the panel will recommend full revision of the guideline to the idsa standards and practice guidelines committee and the board for review and approval. e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ guideline recommendations for the evaluation and treatment of patients with fever and neutropenia i. what is the role of risk assessment and what distinguishes high-risk and low-risk patients with fever and neutropenia? recommendations . assessment of risk for complications of severe infection should be undertaken at presentation of fever (a-ii). risk assessment may determine the type of empirical antibiotic therapy (oral vs iv), venue of treatment (inpatient vs outpatient), and duration of antibiotic therapy (a-ii). . most experts consider high-risk patients to be those with anticipated prolonged (. days duration) and profound neutropenia (anc < cells/mm following cytotoxic chemotherapy) and/or significant medical co-morbid conditions, including hypotension, pneumonia, new-onset abdominal pain, or neurologic changes. such patients should be initially admitted to the hospital for empirical therapy (a-ii). . low-risk patients, including those with anticipated brief (< days duration) neutropenic periods or no or few co- morbidities, are candidates for oral empirical therapy (a-ii). . formal risk classification may be performed using the mascc scoring system (b-i). i. high-risk patients have a mascc score , (b-i). all patients at high risk by mascc or by clinical criteria should be initially admitted to the hospital for empirical antibiotic therapy if they are not already inpatients (b-i). ii. low-risk patients have a mascc score > (b-i). carefully selected low-risk patients may be candidates for oral and/or outpatient empirical antibiotic therapy (b-i). evidence summary risk assessment patients who present with fever and neutropenia may have a variety of clinical outcomes. most receive broad-spectrum empirical antibiotics and survive the episode without major incident. a minority of patients will develop significant in- fections or experience other life-threatening medical events. numerous studies have sought to stratify patients at pre- sentation into those with high- versus low-risk for complications of severe infection. in addition, an ever-broadening clinical ex- perience continues to inform clinical judgment. as noted pre- viously, in this document, the term ‘‘high risk’’ will refer to patients who, in the experience of clinical experts, have an increased risk for severe infection. typically, such patients have sustained, profound neutropenia anticipated to last . week or are clinically unstable (eg, experience uncontrolled pain, altered mental status, or hypotension) or have significant medical co- morbidities, such as uncontrolled cancer, chronic obstructive pulmonary disease, poor functional status, or advanced age. high-risk patients also may be identified by underlying cancer (eg, acute leukemia) and/or the intensity of chemotherapy un- dergone (eg, induction for acute leukemia or hsct). further- more, the selection of patients who may benefit the most from antimicrobial prophylaxis (see section vi) is based upon these criteria for being at high risk, which are derived from clinical trials [ – ]. most clinicians (including panel members) use and understand this clinically relevant categorization of ‘‘high-risk’’ in the context of fever and neutropenia. low-risk patients are clinically defined by neutropenia anticipated to last < days, are clinically stable, and have no medical comorbid conditions. in addition to this clinical definition, the mascc has de- veloped a risk assessment scheme and a well-validated scoring method that can identify subgroups of febrile neutropenic pa- tients with low or high risk of complications and death [ , – ]. the mascc score is also a means to determine which patients require prolonged hospitalization and which may be candidates for oral or once-daily iv regimens and/or for early discharge from the hospital to complete the antibiotic course as outpatients. in this document, patients with increased risk as defined by mascc table . strength of recommendation and quality of evidence category/grade definition strength of recommendation a good evidence to support a recommendation for or against use. b moderate evidence to support a recommendation for or against use. c poor evidence to support a recommendation. quality of evidence i evidence from > properly randomized, controlled trial. ii evidence from > well-designed clinical trial, without randomization; from cohort or case- controlled analytic studies (preferably from . center); from multiple time-series; or from dramatic results from uncontrolled experiments. iii evidence from opinions of respected authorities, based on clinical experience, descriptive studies, or reports of expert committees. note. adapted from [ ]. reproduced with the permission of the minister of public works and government services canada. clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ criteria will be referred to as ‘‘high risk by mascc criteria.’’ a similar distinction will be applied to low-risk patients. the mascc scoring system is a summation of weighted risk factors, including patient age, history, outpatient or inpatient status, acute clinical signs, the presence of medical comorbid conditions, and severity of fever and neutropenia as assessed by ‘‘burden of illness.’’ low-risk patients are identified by a cu- mulative score > points (table ). a fundamental difficulty with the mascc system is the nebulous nature of one of its major criteria: the ‘‘burden of febrile neutropenia’’ and symp- toms associated with that burden. this may be interpreted to be a measure of how ‘‘sick’’ the patient appears to be on pre- sentation. however, without a clear standardized definition of this ‘‘burden’’ of disease, uniform application of the mascc tool may be confusing [ ]. in a validation study of the mascc assessment tool, the rate of serious medical complications during the course of neu- tropenia was only % among febrile neutropenic adult patients initially classified as low risk [ ]. of the patients with episodes that were predicted to be low risk, ( %) were eligible for oral treatment, but only patients ( %) met ad- ditional stringent criteria for discharge from the hospital and receipt of outpatient therapy (clinically stable or improving and with an adequate home environment and psychosocial status) after at least h of observation in hospital. only patients required re-admission to the hospital for fever or other reasons, and there were no adverse events among the carefully selected outpatient subgroup. the panel recommends that either the clinical judgment criteria that have been based upon data derived from published clinical trials or the mascc assessment tool can be used to stratify risk for patients presenting with fever and neutropenia. risk assessment should then inform decisions about the type of regimen and appropriate venue for delivery of empirical antibiotics, as well as the timing of hospital discharge [ – , ]. specific definitions of high and low risk are given below. high-risk patient: patients with any of the following criteria (based on clinical trial criteria from studies assessing risk in febrile neutropenic patients) are considered to be at high risk for serious complications during fever and neutropenia. alterna- tively, a mascc score , may be used to define individuals at high risk using mascc criteria. high-risk patients should ini- tially receive iv empirical antibiotic therapy in the hospital. ¤ profound neutropenia (anc < cells/mm ) anticipated to extend . days ¤ presence of any co-morbid medical problems including but not limited to: d hemodynamic instability d oral or gastrointestinal mucositis that interferes with swallowing or causes severe diarrhea d gastrointestinal symptoms, including abdominal pain, nausea and vomiting, or diarrhea d neurologic or mental-status changes of new onset d intravascular catheter infection, especially catheter tunnel infection d new pulmonary infiltrate or hypoxemia, or underlying chronic lung disease ¤ evidence of hepatic insufficiency (defined as aminotrans- ferase levels . normal values) or renal insufficiency (defined as a creatinine clearance of , ml/min). it is important to note that the duration of neutropenia is not included as a criterion for risk in the mascc assessment scheme; however, the panel considers it to be an important determinant. in the initial multivariate analysis that led to the development of the mascc criteria, longer neutropenia dura- tion was not found to be a significant risk factor for poor table . the multinational association for supportive care in cancer risk-index score characteristic weight burden of febrile neutropenia with no or mild symptomsa no hypotension (systolic blood pressure . mmhg) no chronic obstructive pulmonary disease b solid tumor or hematologic malignancy with no previous fungal infection c no dehydration requiring parenteral fluids burden of febrile neutropenia with moderate symptoms a outpatient status age , years note. the maximum value of the score is . adapted from [ ]. reproduced with permission of the american society for clinical oncology. a burden of febrile neutropenia refers to the general clinical status of the patient as influenced by the febrile neutropenic episode. it should be evaluated on the following scale: no or mild symptoms (score of ); moderate symptoms (score of ); and severe symptoms or moribund (score of ). scores of and are not cumulative. b chronic obstructive pulmonary disease means active chronic bronchitis, emphysema, decrease in forced expiratory volumes, need for oxygen therapy and/or steroids and/or bronchodilators requiring treatment at the presentation of the febrile neutropenic episode. c previous fungal infection means demonstrated fungal infection or empirically treated suspected fungal infection. e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ outcome [ ]. nonetheless, a review of the mascc criteria applied to a large population at one us cancer center found that patients defined as low risk by the tool ‘‘predominantly are patients with solid tumors who are receiving conventional chemotherapy as outpatients who have minimal medical co- morbidity and an expected duration of neutropenia of < – days’’ [ ]. the panel has agreed that cumulative clinical ex- perience indicates that patients in whom prolonged neutropenia is expected as a consequence of hsct preparation or induction chemotherapy for aml should be regarded as at high risk and always hospitalized initially for fever and neutropenia. patients receiving autologous hsct or consolidation therapy for leu- kemia may also have prolonged neutropenic periods but appear to be at somewhat lower risk for serious infections. if these patients attain a mascc score that predicts low risk, it may be reasonable to prescribe antimicrobial management accordingly. low-risk patients: low-risk patients are those with neu- tropenia expected to resolve within days and no active medical co-morbidity, as well as stable and adequate hepatic function and renal function. these low-risk features are most commonly found among patients with solid tumors, although not exclu- sively so. in general, any patient who does not strictly fulfill criteria for being at low risk should be treated according to guidelines for high-risk patients. patients who are at low risk by mascc criteria have a mascc score > . ii. what specific tests and cultures should be performed during the initial assessment? recommendations . laboratory tests should include a cbc count with differential leukocyte count and platelet count; measurement of serum levels of creatinine and blood urea nitrogen; and measurement of electrolytes, hepatic transaminase enzymes, and total bilirubin (a-iii). . at least sets of blood cultures are recommended, with a set collected simultaneously from each lumen of an existing cvc, if present, and from a peripheral vein site; blood culture sets from separate venipunctures should be sent if no central catheter is present (a-iii). blood culture volumes should be limited to , % of total blood volume (usually � ml/kg) in patients weighing , kg (c-iii). . culture specimens from other sites of suspected infection should be obtained as clinically indicated (a-iii). . a chest radiograph is indicated for patients with respiratory signs or symptoms (a-iii). evidence summary physical examination signs and symptoms of inflammation are often attenuated or absent in neutropenic patients. accordingly, in neutropenic patients, bacterial infections of skin and soft-tissue may lack induration, erythema, warmth, or pustulation; a pulmonary infection may have no discernible infiltrate on a radiograph; csf pleocytosis might be modest or altogether absent in the setting of meningitis; and a urinary tract infection may demonstrate little or no pyuria. fever is often the only sign of a serious un- derlying infection. a detailed history should include elicitation of new site-spe- cific symptoms, information about antimicrobial prophylaxis, infection exposures, prior documented infections or pathogen colonization, and co-existence of noninfectious causes of fever, such as blood product administration. underlying co-morbid conditions, such as diabetes, chronic obstructive lung disease, and/or recent surgical procedures, should be noted. the physical examination of febrile neutropenic patients requires a careful search to detect subtle symptoms and signs, especially at the sites that are most commonly infected: skin (especially sites of pre- vious procedures or catheters, such as catheter entry and exit sites or bone marrow aspiration sites), oropharynx (including periodontium), alimentary tract, lungs, and perineum. addi- tional diagnostic tools include blood tests, microbiologic cul- tures, and radiographic studies. cultures the total volume of blood cultured is a crucial determinant of detecting a bloodstream infection [ ]. ac- cordingly, at least sets of blood culture specimens should be obtained, (a ‘‘set’’ consists of venipuncture or catheter access draw of � ml of blood divided into aerobic and anaerobic blood culture bottle). in pediatric patients weighing , kg, proportionately smaller volumes of blood culture samples are suggested. some centers limit blood draws to no more than % of a patient’s total blood volume. because total blood volume is approximately ml/kg, the total sample limit would be ml for a -kg patient and ml for a -kg patient [ ]. recently, retrospective studies found that blood culture sets detect %– % of bloodstream pathogens in critically ill patients, whereas > sets are required to achieve . % detection [ – ]. in the neutropenic patient with cancer, collection of blood culture sets from all cvc lumens (if present), as well as set from a peripheral vein, is advocated during the initial eval- uation of fever. some experts have suggested obtaining both sets of blood cultures from the cvc alone, without peripheral vein sampling. however, the panel does not favor this approach for initial evaluation, because a catheter-related infection cannot be ruled out without the simultaneous peripheral culture [ – ]. if fever persists after empirical antibiotics have been started, then sets of blood cultures (via catheter or periphery) may be obtained on each of the next days. beyond that, most experts would not continue daily blood cultures for persistent fever unless there is a clinical change in the patient. after initial defervescence occurs with empirical antibiotics, any recrudescent fever should be evaluated with cultures as a new episode of possible infection. clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ culture of the sites listed below should be guided by clinical signs and symptoms but should not be performed routinely. ¤ stool: a stool specimen in a patient with diarrhea should be evaluated with a clostridium difficile toxin assay. there is limited value in sending a stool specimen for bacterial pathogen cultures or for ova and parasite examination for most patients treated in us hospitals unless there has been recent travel to or residence in areas of endemicity. ¤ urine: culture of urine samples is indicated if signs or symptoms of urinary tract infection exist, a urinary catheter is in place, or the findings of urinalysis are abnormal. ¤ csf: examination and culture of spinal fluid is indicated if meningitis is suspected. platelet transfusion should be given prior to lumbar puncture if thrombocytopenia is a concern. ¤ skin: aspiration or biopsy of skin lesions suspected of being infected should be performed for cytological testing, gram staining, and culture [ ]. ¤ respiratory specimens: sputum samples for routine bacterial culture should be sent if the patient has a productive cough. lower respiratory tract specimens obtained by bron- choalveolar lavage (bal) are recommended for patients with an infiltrate of uncertain etiology visible on chest imaging. nasal wash or bal specimens are recommended to evaluate for symptoms of respiratory virus infection, particularly during an outbreak or during winter. assays should be sent for detection of adenovirus, influenza a and b virus, rsv, and parainfluenza virus. radiography patients with respiratory signs and symptoms should have a chest radiograph to rule out pneumonia. pneumonia during neutropenia can progress rapidly to respiratory compromise and therefore should be managed in the inpatient setting. ct of other areas (head, sinuses, abdomen, and pelvis) should be performed as clinically indicated. other laboratory analysis cbc counts and determination of the levels of serum creatinine and urea nitrogen are needed to plan supportive care and to monitor for the possible occurrence of drug toxicity. these tests should be done at least every days during the course of in- tensive antibiotic therapy. at least weekly monitoring of serum transaminase levels is advisable for patients with complicated courses or suspected hepatocellular injury or cholestatic disease. serum markers of inflammation studies have demonstrated inconsistent results regarding the use of such markers of inflammation as c-reactive protein, inter- leukins- and - , and procalcitonin in neutropenic patients with cancer [ – ]. the current data are not sufficient to recom- mend routine use of these tests to guide decisions about anti- microbial use. iii. in febrile patients with neutropenia, what empiric antibiotic therapy is appropriate and in what venue? recommendations general considerations . high-risk patients require hospitalization for iv empirical antibiotic therapy; monotherapy with an anti-pseudomonal b-lactam agent, such as cefepime, a carbapenem (meropenem or imipenem-cilastatin), or piperacillin-tazobactam, is recommended (a-i). other antimicrobials (aminoglycosides, fluoroquinolones, and/or vancomycin) may be added to the initial regimen for management of complications (eg, hypotension and pneumonia) or if antimicrobial resistance is suspected or proven (b-iii). . vancomycin (or other agents active against aerobic gram- positive cocci) is not recommended as a standard part of the initial antibiotic regimen for fever and neutropenia (a-i). these agents should be considered for specific clinical indications, including suspected catheter-related infection, skin and soft-tissue infection, pneumonia, or hemodynamic instability. . modificationsto initialempiricaltherapymaybeconsidered for patients at risk for infection with the following antibiotic- resistant organisms, particularly if the patient’s condition is unstable or if the patient has positive blood culture results suspicious for resistant bacteria (b-iii). these include mrsa, vre, esbl-producing gram-negative bacteria, and carbapenemase-producing organisms, including kpc. risk factors include previous infection or colonization with the organism and treatment in a hospital with high rates of endemicity. ¤ mrsa: consider early addition of vancomycin, linezolid, or daptomycin (b-iii). ¤ vre: consider early addition of linezolid or daptomycin (b-iii). ¤ esbls: consider early use of a carbapenem (b-iii). ¤ kpcs: consider early use of polymyxin-colistin or tigecycline (c-iii). . most penicillin-allergic patients tolerate cephalosporins, but those with a history of an immediate-type hypersensitivity reaction (eg, hives and bronchospasm) should be treated with a combination that avoids b-lactams and carbapenems, such as ciprofloxacin plus clindamycin or aztreonam plus vancomycin (a-ii). . afebrile neutropenic patients who have new signs or symptoms suggestive of infection should be evaluated and treated as high-risk patients (b-iii). . low-risk patients should receive initial oral or iv empirical antibiotic doses in a clinic or hospital setting; they may be transitioned to outpatient oral or iv treatment if they meet specific clinical criteria (a-i). e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ i. ciprofloxacin plus amoxicillin-clavulanate in combination is recommended for oral empirical treatment (a-i). other oral regimens, including levofloxacin or ciprofloxacin monother- apy, or ciprofloxacin plus clindamycin, are less well studied but are commonly used (b-iii). ii. patients receiving fluoroquinolone prophylaxis should not receive oral empirical therapy with a fluoroquinolone (a-iii). iii. hospital re-admission or continued stay in the hospital is required for persistent fever or signs and symptoms of worsening infection (a-iii). evidence summary general considerations the goal of initial empirical antibiotic therapy is to prevent serious morbidity and mortality due to bacterial pathogens, until the results of blood cultures are available to guide more- precise antibiotic choices. however, a recent prospective ob- servational study involving . patients revealed that only % of febrile neutropenic episodes are associated with bac- teremia [ ]. frequencies of gram-positive, gram-negative, and polymicrobial bacteremia were approximately %, %, and %, respectively. although isolation of gram-positive organisms was more common than isolation of gram-negative organisms, gram-negative bacteremias were associated with greater mor- tality ( % vs %). coverage of p. aeruginosa has largely driven the recommended antibiotic choices for fever and neutropenia in the past because of the especially high mortality rates asso- ciated with this infection, and p. aeruginosa coverage remains an essential component of the initial empirical antibiotic regimen in the current era [ – ]. furthermore, even if blood cultures remain negative, empirical antibiotics are considered vital to cover possible occult infections in febrile neutropenic patients. despite decades of well-performed clinical trials, no single empirical therapeutic regimen for the initial treatment of febrile patients with neutropenia has emerged as clearly superior to others [ ]. all effective empirical antibiotic regimens (combi- nation or monotherapy) share certain essential features, in- cluding bactericidal activity in the absence of white blood cells, anti-pseudomonal activity, and minimal toxicity. in recent years, an increasing incidence and array of antibiotic-resistant pathogens have become significant challenges in the treatment of neutropenic and other hospitalized patients [ – , , – , – ]. routine empirical coverage of this broad range of bac- teria is not possible. rather, the aim is to cover the most likely and most virulent pathogens that may rapidly cause serious or life-threatening infections in a given patient. this may be ac- complished with a variety of antibiotic regimens, including both multidrug combinations and monotherapy regimens, but the ultimate selection of a particular empirical antibiotic regimen should be based on the risk status of the patient (low vs high); on localizing signs or symptoms of infection, such as pulmonary infiltrate or cellulitis; and especially on trends in the epidemi- ology of pathogens causing infections in neutropenic patients, with special attention to local and even individual patient pat- terns of bacterial colonization and resistance. figure depicts an algorithm for managing patients at high and low risk who present with fever and neutropenia. once blood culture results and organism suscepibilities are available—usually within sev- eral days after blood samples are drawn—they may direct a more specific choice of antibiotics. in a majority of cases, however, blood culture results are negative. in these cases, empirical an- tibiotics are generally continued until anc recovery is immi- nent or until an infection requiring alternative antimicrobial coverage is identified. initial antibiotics for high-risk patients high-risk patients require inpatient management with iv broad-spectrum antibiotic therapy that covers p. aeruginosa and other serious gram-negative pathogens. monotherapy with an anti-pseudomonal b-lactam agent, such as cefepime, a car- bapenem (imipenem-cilastatin or meropenem), or piperacillin- tazobactam are each as effective as multidrug combinations and are recommended as first-line therapy [ – , – , , – ]. a recent meta-analysis found a significant advantage of b-lactam monotherapy over b-lactam plus aminoglycoside combinations, in that the former was associated with fewer ad- verse events and less morbidity, but with similar rates of survival [ ]. many centers have found that ceftazidime is no longer a reliable agent for empirical monotherapy of fever and neu- tropenia because of its decreasing potency against gram-negative organisms and its poor activity against many gram-positive pathogens, such as streptococci [ , – ]. aminoglycoside monotherapy should not be used for either empirical coverage or for bacteremia during neutropenia because of the rapid emer- gence of microbial resistance to this class of agents. cefepime remains an acceptable monotherapy for empirical coverage of febrile neutropenia. however, a meta-analysis by yahav et al [ ] of randomized clinical trials involving neutropenic patients noted an increased -day mortality associated with the use of cefepime, compared with other b-lactams, in this patient population (risk ration [rr], . ; % confidence interval [ci], . – . ), stirring doubt and controversy about the safety of the drug. the authors of this study were not able to provide a biologically plausible expla- nation for this apparent increased risk of death, and subsequent analyses have raised questions about the trial data included in the study [ – ]. in previously published prospective, ran- domized trials involving febrile neutropenic populations, an association between mortality and cefepime was not identified [ ]. nonetheless, concerns about continued cefepime use prompted the us food and drug administration (fda) to undertake a second comprehensive meta-analysis, using an ex- panded dataset of all cefepime-based studies involving fever clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ and neutropenia (including many not included in the earlier meta-analysis) [ ]. the fda study, which included both trial data and patient-level data controlled for mortality-related risk factors, found no statistically significant increase in -day mortality associated with cefepime use (rr, . ; % ci, . – . ). therefore, the panel continues to consider cefepime a re- liable first-line agent for empirical antibiotic coverage for fever and neutropenia. increasingly, drug-resistant gram-negative bacterial species are responsible for infections in febrile neutropenic patients. esbl genes confer a broad range of b-lactam antibiotic re- sistance among these species, primarily among klebsiella species and e. coli [ – ]. carbapenemase-producing or- ganisms, including klebsiella species and p. aeruginosa, may also cause infections refractory to imipenem or meropenem [ ]. organisms producing kpcs are resistant to all b-lactam antibiotics and may require treatment with colistin or tige- cycline [ – ]. recognition of these resistant species re- quires careful interpretation of hospital and organism-specific antibiograms. vancomycin is not a standard part of empirical antibiotic therapy for fever and neutropenia. despite the predominance of gram-positive organisms as the cause of bacteremia during fever and neutropenia, randomized studies comparing em- pirical regimens with and without vancomycin as part of the initial empirical regimen have shown no significant reduc- tions in either the duration of fever or overall mortality [ , , , – ]. coagulase-negative staphylococci, which are the most commonly identified cause of bacteremia in neu- tropenic patients, are weak pathogens that rarely cause rapid clinical deterioration, so there is usually no urgent need to treat such infections with vancomycin at the time of fever figure . initial management of fever and neutropenia. *limited data to support recommendation. anc, absolute neutrophil count; ct, computed tomography; mri, magnetic resonance imaging. e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ [ ]. a single blood culture positive for coagulase-negative staphylococci should generally be dismissed as attributable to a contaminant, assuming that a second set of blood specimens have been drawn that have negative culture results. the pri- mary reason for the judicious use of vancomycin has been the epidemiological link between its overuse and the development of drug resistance in enterococcus species and s. aureus [ , , – ]. however, there are specific circumstances that warrant the addition of vancomycin (or another antibiotic with enhanced gram-positive coverage) to the initial empir- ical regimen for fever and neutropenia (table ). notably, monotherapy regimens, including cefepime, carbapenems and piperacillin-tazobactam, provide excellent coverage of viridans streptococci and are considered to be adequate solo agents for the treatment of febrile neutropenia in patients with oral mucositis, precluding the need for the addition of vancomycin to the regimen [ ]. if vancomycin or another gram-positive active agent is added to the initial regimen for clinical reasons, it should be dis- continued or days later if susceptible bacteria are not re- covered from the patient. as with vancomycin, newer gram- positive agents, such as linezolid, quinupristin-dalfopristin, ti- gecycline, televancin, or daptomycin, have no proven role in routine empirical coverage. some hazards related to use of these gram-positive agents include the emergence of linezolid- resistant enterocococcus species in neutropenic patients receiving the drug, marrow-suppression with linezolid, and severe ar- thralgias with quinupristin-dalfopristin [ – ]. accordingly, they should be used only for targeted therapy of specific pathogens or for empirical use in hsct recipients colonized with vre who develop fever [ ]. in view of the widespread presence of mrsa in both hospital and community settings, the panel recognizes that there may be an increasing epidemiologic rationale for employing vancomy- cin as a part of the empirical regimen. serious infections due to s. aureus are more often associated with septic shock than are infections due to coagulase-negative staphylococci [ ]. neu- tropenic patients who are colonized with mrsa may benefit from early empirical use of vancomycin (specifically, if they are hemodynamically unstable or if gram-positive cocci are detected in their blood cultures). however, vancomycin (or similar coverage for gram-positive organisms) is not endorsed as a routine component of the empirical antibiotic regimen. bacteremia due to viridans streptococci, which may be re- sistant to b-lactams and fluoroquinolones, may result in shock and adult respiratory distress syndrome [ – ]. gastroin- testinal mucositis, ceftazidime use, and prophylaxis with ci- profloxacin or levofloxacin are important risk factors for developing serious viridans streptococci bacteremia during neutropenia [ ]. ten percent to % of viridans group streptococci may be penicillin-resistant, and many viridans group streptococci have reduced susceptibility to fluo- roquinolones [ , ]. early vancomycin treatment appears to reduce mortality [ ]. pneumococci may also cause fulminant infection if they are not recognized quickly and treated promptly with appropriate antibiotics; it may be prudent to add vanco- mycin to the treatment regimen until antibiotic susceptibilities are available and antimicrobial coverage is adjusted accordingly. stomatococcus mucilaginosis is also a potentially virulent but rare gram-positive bloodstream pathogen in neutropenic patients [ – ]. vre bloodstream infection is difficult to treat in the setting of fever and neutropenia, particularly in leukaemic pa- tients and/or hsct recipients, and it is an independent risk factor for death [ , – , – ]. vre colonization is an important risk factor for subsequent invasive disease [ ]. local and even individual patient patterns of bacterial colonization and resistance must be taken into account when choosing an initial empirical regimen for neutropenic patients at a given institution [ ]. as noted above, ciprofloxacin monotherapy is not an ade- quate therapy for febrile neutropenic patients because of its weak activity against gram-positive organisms, especially viridans streptococci [ , , – ]. in combination with vancomy- cin or clindamycin, however, it is a suitable alternative for pa- tients who are allergic to b-lactams [ ]. double b-lactam regimens are discouraged because of concerns about increased expense and toxicity without added benefit [ – ]. initial antibiotics for low-risk patients carefully selected febrile adult neutropenic patients at low risk for complications during neutropenia may be treated initially with oral broad-spectrum antibiotics [ , – , – , , ]. in general, the use of oral antibiotics may be considered only for patients who fulfill clear criteria for being at low-risk for com- plications during neutropenia, as defined above [ , – ]. in large, placebo-controlled studies, outcomes for low-risk patients treated with an empirical oral combination of ciprofloxacin and table . indications for addition of antibiotics active against gram-positive organisms to the empirical regimen for fever and neutropenia ¤ hemodynamic instability or other evidence of severe sepsis ¤ pneumonia documented radiographically ¤ positive blood culture for gram-positive bacteria, before final identification and susceptibility testing is available ¤ clinically suspected serious catheter-related infection (eg, chills or rigors with infusion through catheter and cellulitis around the catheter entry/exit site) ¤ skin or soft-tissue infection at any site ¤ colonization with methicillin-resistant staphylococcus aureus, vancomycin-resistant enterococcus, or penicillin-resistant strep- tococcus pneumoniae (see text) ¤ severe mucositis, if fluoroquinolone prophylaxis has been given and ceftazidime is employed as empirical therapy clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ amoxicillin-clavulanate were comparable to those for patients treated with iv antibiotic regimens. notably, because patients were managed as inpatients in both studies, neither trial exam- ined the feasibility of outpatient oral therapy [ , ]. ciprofloxacin should not be employed as a solo agent because of its poor coverage of gram-positive organisms [ , , , – ]. levofloxacin has better activity against gram-positive organisms but less potent anti-pseudomonal activity than does ciprofloxacin, which makes it a potentially attractive agent for oral empirical therapy in low-risk patients [ ]. a recent survey found that practicing oncologists frequently employ levo- floxacin monotherapy to treat low-risk patients with fever and neutropenia. however, a definitive clinical trial to evaluate its efficacy has not been performed [ ]. the anti-pseudomonal activity of levofloxacin mg daily is probably inadequate, but it may be sufficient at mg daily because of the higher bac- tericidal drug concentrations that are achieved [ – ]. at present, there are not enough data to endorse either levofloxacin or other fluoroquinolone monotherapies. despite the obvious advantages of oral therapy, including re- duced cost, lack of need for indwelling iv access, decreased toxicity, and improved patient acceptance [ ], few studies have assessed the feasibility of managing patients solely in the out- patient setting. rather, most studies have observed patients in the hospital during the first h of empirical antibiotic therapy, although in a few studies patients have been discharged from the hospital as early as h after the initial dose was administered [ – ]. an outpatient treatment course with oral or iv anti- biotics may be considered after a brief inpatient stay, during which iv therapy is initiated, fulminant infection is excluded, the patient is deemed to be clinically stable and at low-risk for complications, assessment of family support is completed, and the status of initial culture specimens may be ascertained [ , , ]. in one large series, oral outpatient treatment for low-risk fever and neutropenia was deemed to be successful in % of patients, with % of patients requiring re-admission to the hospital, primarily for persistent fever. factors predicting re- admission included age . years, grade of mucositis . , poor performance status, and anc , cells/mm at the outset of fever [ ]. if outpatient management is prescribed, then vigilant obser- vation and prompt access to appropriate medical care must also be ensured h a day, days a week. preferably, patients who- se clinical conditions worsen should be able to reach their local medical facility within h. recurrent fever or new signs of in- fection mandate hospital readmission and institution of a stan- dard empirical regimen of broad-spectrum iv antibiotics. for many patients and for some institutions, outpatient therapy may not be advisable simply because of practical considerations, such as distance from the hospital or lack of a home caregiver or transportation. patients with recovering neutrophil counts are better candidates for outpatient treatment than are patients with decreasing counts or no indication of marrow recovery. fluoroquinolone prophylaxis in a patient strictly precludes the subsequent use of fluoroquinolones for initial empirical therapy; such patients should receive a b-lactam agent if they become febrile during neutropenia. iv. when and how should antimicrobials be modified during the course of fever and neutropenia? recommendations . modifications to the initial antibiotic regimen should be guided by clinical and microbiologic data (a-ii). . unexplained persistent fever in a patient whose condition is otherwise stable rarely requires an empirical change to the initial antibiotic regimen. if an infection is identified, antibiotics should be adjusted accordingly (a-i). . documented clinical and/or microbiological infections should be treated with antibiotics appropriate for the site and for the susceptibilities of any isolated organisms (a-i). . if vancomycin or other coverage for gram-positive organisms was started initially, it may be stopped after days if there is no evidence for a gram-positive infection (a-ii). . patients who remain hemodynamically unstable after initial doses with standard agents for neutropenic fever should have their antimicrobial regimen broadened to include coverage for resistant gram-negative, gram-positive, and anaerobic bacteria and fungi (a-iii). . low-risk patients who have initiated iv or oral antibiotics in the hospital may have their treatment approach simplified if they are clinically stable (a-i). iii. an iv-to-oral switch in antibiotic regimen may be made if patients are clinically stable and gastrointestinal absorption is felt to be adequate (a-i). iv. selected hospitalized patients who meet criteria for being at low risk may be transitioned to the outpatient setting to receive either iv or oral antibiotics, as long as adequate daily follow-up is ensured (b-iii). if fever persists or recurs within h in outpatients, hospital re-admission is recommended, with management as for high-risk patients (a-iii). . empirical antifungal coverage should be considered in high-risk patients who have persistent fever after – days of a broad-spectrum antibacterial regimen and no identified fever source (a-ii). evidence summary once they have initiated empirical antibiotics for fever, all neutropenic patients must be monitored closely for response, adverse effects, emergence of secondary infections, and the development of drug-resistant organisms. this involves daily physical examination, review of systems for new symptoms, cultures of specimens from suspicious sites, e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ and/or directed imaging studies. with empirical antibiotics, the median time to defervescence in patients with hematologic malignancies, including hsct, is � days [ , – ], whereas for patients at lower risk with solid tumor, de- fervescence occurs at a median of days [ ]. this should be kept in mind when evaluating neutropenic patients who remain febrile after the initiation of empirical antibacterials. persistent fever alone in a patient whose condition is otherwise stable is rarely an indication to alter the antibiotic regimen. specific antimicrobial additions or changes to the initial regimen should be guided by clinical change or culture results rather than by the fever pattern alone. broader decisions about when and how to modify antimicrobial coverage during the course of neutropenia should be based on the risk category (low or high), the source of fever in documented infections, and a clinical judgment about whether the patient is responding to the initial regimen. figure shows the algorithm for management of patients during days – after starting empirical antibiotic therapy, when most modifications will be made to the initial regimen. unexplained fever patients with unexplained fever who are responding to initial empirical therapy may be maintained on that initial regimen until the recovery of anc to . cells/mm . if they have initiated iv antibiotics, patients who meet criteria for being at low risk (table ) and can tolerate oral medications may be candidates for transitioning to combination oral antibiotics. as addressed above (see section iii), important issues to address before outpatient antibiotic treatment is assigned include figure . reassess after - days of empirical antibiotic therapy. anc, absolute neutrophil count; ct, computed tomography; iv, intravenous; mri, magnetic resonance imaging. clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ ascertainment of how long the patient should be observed in a controlled clinical setting before hospital discharge; the ap- propriateness and safety of the home environment; the type and frequency of clinical follow-up; and discrete indications for re- admission to the hospital. persistent fever in an otherwise asymptomatic and hemody- namically stable patient is not a reason for undirected antibiotic additions or changes. specifically, there is no proven advantage to adding vancomycin empirically in the setting of persistent or recrudescent fever and neutropenia. a randomized prospective study of vancomycin versus placebo added to initial empirical piperacillin-tazobactam after – h of persistent fever showed no difference in time-to-defervescence [ ]. similarly, effective monotherapies, such as cefepime and carbapenems, are also unlikely to benefit from the empirical addition of vancomycin for persistent fever, and this practice is discouraged. if treatment with vancomycin was added empirically at the outset of therapy, as part of the initial regimen, it should be stopped if blood cultures have incubated for h and demonstrated no patho- genic gram-positive organisms [ ]. a switch from one em- pirical monotherapy to another or the addition of an aminoglycoside to the treatment regimen is also not generally useful, unless there is a need for an expanded spectrum of coverage as dictated by clinical or microbiologic data. an im- portant exception, as noted above, is for low-risk outpatients who are being treated with empirical oral or iv therapy. if they have not responded with improvements in fever and clinical symptoms within h, they should be re-admitted to the hos- pital and re-evaluated, and an iv broad-spectrum antibacterial regimen should be initiated. recurrent or persistent fever . days in duration despite empirical antibiotic therapy should prompt a thorough search for a source of infection, including a new set of blood cultures and symptom-direction collection of other diagnostic tests. break- through infections, such as c. difficile–associated diarrhea or a catheter-related skin or bloodstream infection, are not un- common. diarrhea should be assessed by analyzing a stool sample for c. difficile toxin using available tests, including en- zyme immunoassays or the -step antigen assay for c. difficile and toxin, but other studies, such as stool white blood cell count, stool bacterial pathogen cultures, or tests for ova and parasites, are not necessary for hospitalized patients. empirical treatment of c. difficile with oral vancomycin or metronidazole may be em- ployed for patients with symptoms of abdominal cramping and diarrhea until diagnostic results are available or if c. difficile in- fection is strongly suspected clinically [ ]. an abdominal ct may be helpful in patients with recrudescent neutropenic fever who have abdominal pain and/or diarrhea, to evaluate the pos- sibility of neutropenic enterocolitis [ – ]. a ct of the chest and sinuses is recommended for high-risk patients, to further assess for occult invasive fungal infection (see section viii). for patients with recurrent or persistent fever, consideration should also be given to noninfectious sources, such as drug- related fever, thrombophlebitis, the underlying cancer itself, or resorption of blood from a large hematoma. in many cases, no source of persistent fever is identified but the patient defervesces nonetheless, when the anc increases to . cells/mm . hemodynamically unstable neutropenic patients with per- sistent fever without a clear source should have their antimi- crobial regimen broadened to ensure adequate coverage for drug-resistant gram-negative and gram-positive organisms, as well as for anaerobes. this may be achieved by a change from an initial cephalosporin to an anti-pseudomonal carbapenem, such as imipenem or meropenem, as well as by the prompt addition of an aminoglycoside, ciprofloxacin, or aztreonam together with vancomycin. the addition of anti-candida coverage with flu- conazole or a newer antifungal agent (if fluconazole is already being given prophylactically) is also prudent in for patients who experience systemic inflammatory response syndrome during neutropenia. high-risk patients who have persistent or recurrent fever after – days of treatment with broad-spectrum antibacterials and who are anticipated to have prolonged neutropenia lasting . days are candidates for the addition of empirical anti-mold therapy. a detailed discussion of this recommendation is pro- vided in section viii. documented infections identification of a clinically or microbiologically documented infection should guide any changes to the initial empirical an- tibiotic regimen. antimicrobial modifications should be based on identified or suspected pathogens (if none can be cultured) and on available antimicrobial susceptibility data, including local susceptibility and resistance trends. modifications for specific documented infections are discussed below, with the caveat that local patterns of susceptibility are the most critical factor in making final decisions. gram-negative bloodstream infections in patients with neutropenia may initially be treated with combinations of b-lactam or carbapenem agents plus aminoglycosides or flu- oroquinolones to provide broad initial coverage of possible multidrug-resistant pathogens at the outset of treatment [ – ]. one recent study demonstrated that delaying appropriate antibiotic therapy for p. aeruginosa bacteremia for > days was associated with a doubling of the -day mortality in nonneutropenic patients [ ]. once the patient is stable and in vitro susceptibilities are known, antibiotic treatment can be reduced to monotherapy with a b-lactam agent, which is adequate for most simple bacteremias during neutropenia [ – , – , – , – ]. pneumonia in neutropenic patients should generally be treated as a health care–acquired infection according to re- cent guidelines from the american thoracic society [ ]. e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ immunosuppressed patients and those who have been hospi- talized or received antibiotics within the preceding days are considered to be among those at high risk for developing pneumonia with multidrug-resistant pathogens. an initial broad-spectrum treatment with combinations of a b-lactam or carbapenem plus an aminoglycoside or antipseudomonal fluo- roquinolone is recommended for these patients. in severe cases of pneumonia, as documented by hypoxia or extensive in- filtrates, or if mrsa is suspected, the addition of vancomycin or linezolid to the treatment regimen is in order. although this triple combination provides broad coverage for legionella spe- cies, drug-resistant gram-negative pathogens, and mrsa, it should be emphasized that the degree of immunocompromise, prior antibiotic and infection history, and local patterns of an- tibiotic resistance must be considered before deciding upon a specific regimen to treat pneumonia in a given neutropenic patient. initiation of inadequate or limited regimens for health care–associated pneumonia is a major risk factor for excess mortality and prolonged length of stay [ ]. when possible, pneumonia should be evaluated with bal and biopsy. adjust- ment of the empirical regimen can be guided by the identity and susceptibility of pathogens and by clinical progress [ ]. for patients with gram-positive bloodstream isolates or with skin and soft-tissue infections, the early addition of vancomycin (or linezolid or daptomycin) to the treatment regimen is rec- ommended until susceptibility results are available for the or- ganism(s) that have been isolated. linezolid may cause marrow suppression and thus impair anc and platelet recovery, par- ticularly when given for . days [ – ]. elevations of creatine kinase level may be seen in patients who receive dap- tomycin treatment. other specific sites of documented infection should be cov- ered according to the potential or identified pathogens. oral ulcerations or symptoms of esophagitis may represent hsv or candida esophagitis infections in high-risk patients, so empiri- cal additions of acyclovir and/or fluconazole or another anti- fungal are appropriate. diagnostic endoscopy rarely causes bacteremia [ ] but generally should be avoided in neutropenic thrombocytopenic patients because of the risk of bleeding and perforation [ ]. if it is still indicated after recovery of anc and platelet count, the test can be performed. the onset of severe abdominal pain, typically in the right lower quadrant, suggests neutropenic enterocolitis (also referred to as ‘‘typhlitis’’). a ct should be obtained for additional evaluation [ ]. patients who develop neutropenic enterocolitis should be treated with an expanded broad-spectrum regimen, although the most effi- cacious regimen is unknown. because anaerobes and gram- negative organisms predominate in causing neutropenic en- terocolitis, monotherapy with piperacillin-tazobactam or a car- bapenem or a combination of an anti-pseudomonal cephalosporin plus metronidazole are appropriate antibiotic regimens. there is less evidence to support routine additions of vancomycin or an antifungal agent to antimicrobial regimens [ ]. these patients should be evaluated by a surgeon in case a bowel resection is required for uncontrolled sepsis, bleeding, or ischemic bowel. v. how long should empirical antibiotic therapy be given? recommendations . in patients with clinically or microbiologically documented infections, the duration of therapy is dictated by the particular organism and site; appropriate antibiotics should continue for at least the duration of neutropenia (until anc > cells/mm ) or longer if clinically necessary (b-iii). . in patients with unexplained fever, it is recommended that the initial regimen be continued until there are clear signs of marrow recovery; the traditional endpoint is an increasing anc that exceeds cells/mm (b-ii). . alternatively, if an appropriate treatment course has been completed and all signs and symptoms of a documented infection have resolved, patients who remain neutropenic may resume oral fluoroquinolone prophylaxis until marrow recovery (c-iii). evidence summary the traditional approach to duration of antibiotic therapy for a fever of unidentified etiology has been to continue broad-spectrum antibiotics until the patient has been afebrile for at least days and the neutrophil count is . cells/mm on at least one occasion but is showing a con- sistent increasing trend. years of experience have proven this approach to be safe and effective. it is based on the principle that, although antibiotics are required to contain an occult in- fection during neutropenia, the return of adequate effector cells is necessary to protect the patient. variables that can affect this basic approach include the expected duration of neutropenia and how quickly and reliably the patient’s anc recovers. the prophylactic use of csfs and the overall state of the patient’s marrow function also are important determinants of hemato- logic recovery that will aid in the decision about when anti- biotics may be safely stopped. documented infection for documented infections, the duration of antibiotic therapy should be appropriate for effective eradication of the identified infection. most bacterial bloodstream infections, soft-tissue in- fections, and pneumonias require – days of appropriate antibiotic therapy. antibiotic treatment may therefore extend beyond resolution of fever and neutropenia. the antibiotic spectrum can be appropriately narrowed to specifically treat the defined infection once fever has resolved. in the absence of significant impairment of gastrointestinal function (eg, nausea, vomiting, diarrhea, malabsorption, and poor oral intake), an clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ oral antibiotic regimen may be undertaken to complete the full course of therapy. several studies have indicated that, if the antibiotic course is finished but the patient remains neutropenic and afebrile, resuming fluoroquinolone prophylaxis is safe [ ]. unexplained fever in low-risk patients in low-risk patients without documented infection, con- tinuing antibiotic therapy until resolution of both fever and neutropenia is the standard approach. for those patients who have initiated iv antibiotic therapy, a step down to the oral regimen of ciprofloxacin plus amoxicillin-clavulanate is rec- ommended for low-risk patients when they become afebrile after days of treatment, are clinically stable, and have no discernable infection or positive culture results [ ]. however, a number of studies, primarily involving pediatric patients, have supported the simpler alternative of stopping antibiotic therapy altogether before attaining the endpoint of an anc > cells/mm if cultures are negative at h and pa- tients remain afebrile for at least h [ , , – ]. certain predictive hematological criteria may be substituted as an endpoint for resolution of neutropenia, including a daily increase in the absolute phagocyte count (bands and mature neutrophils combined), the absolute monocyte count, or the reticulocyte fraction [ , , , , , – ]. the rationale is that these markers provide substantive evidence of marrow recovery, because they typically precede the anc reaching cells/mm by several days. particularly in patients who are re- ceiving prophylactic csfs, it is reasonable to expect that there will be an increase in neutrophils each day. therefore, in low- risk patients who have defervesced after days of empirical antibiotic therapy, evidence of imminent marrow recovery may direct cessation of broad-spectrum antibiotics prior to the anc reaching cells/mm . unexplained fever in high-risk patients early discontinuation of antibiotic therapy while fever and neutropenia both persist is strongly discouraged for high-risk patients. in such cases, the clinician should search carefully for a potential source of infection and change antibiotic coverage on the basis of clinical or microbiologic evidence to add anti- fungal therapy empirically and/or should use ct of the chest to look for invasive fungal disease. a limited number of studies have demonstrated that neutropenic patients with persistent marrow suppression are at high-risk for recurrent fever and sepsis [ – ]. therefore, patients with profound, persistent myelosuppression and no identifiable source of infection should continue antibiotic therapy until there is evidence of marrow recovery. some experts advocate that patients with unexplained fever who remain afebrile for – days may have empirical an- tibiotics switched back to fluoroquinolone prophylaxis for the remaining duration of neutropenia [ ]. switching from an inpatient antibiotic regimen to outpatient oral or iv regi- mens for patients who have defervesced, combined with careful daily follow up, may also be a reasonable alternative to pro- longed hospitalization of patients waiting for bone marrow re- covery. although these options are used in some centers, there are currently no published trials to confirm their efficacy and safety. vi. when should antibiotic prophylaxis be given, and with what agents? recommendations . fluoroquinolone prophylaxis should be considered for high-risk patients with expected durations of prolonged and profound neutropenia (anc < cells/mm for . days) (b- i). levofloxacin and ciprofloxacin have been evaluated most comprehensively and are considered roughly equivalent, although levofloxacin is preferred in situations with increased risk for oral mucositis-related invasive viridans group streptococcal infection. a systematic strategy for monitoring the development of fluoroquinolone resistance among gram- negative bacilli is recommended (a-ii). . addition of a gram-positive active agent to fluoroquinolone prophylaxis is generally not recommended (a-i). . antibacterial prophylaxis is not routinely recommended for low-risk patients who are anticipated to remain neutropenic for , days (a-iii). evidence summary since the s, studies have demon- strated reductions in the frequency of febrile episodes and in the prevalence of some documented infections among patients who receive prophylactic antibiotics during the early afebrile period of neutropenia [ – ]. the strongest evidence has been for fluoroquinolone prophylaxis [ – ], which has demonstrated an association with reductions in febrile events, documented infections, and bloodstream infections due to gram-positive or gram-negative bacteria [ – ]. until re- cently, however, trials have failed to show a survival advantage associated with antibiotic prophylaxis, which, when combined with concern regarding the promotion of antibiotic-resistant bacteria and fungal overgrowth, as well as the risk for drug- related adverse effects, has strengthened the argument against routine use [ – ]. previously published guidelines by the idsa [ ], the centers for disease control and prevention, and the american society for blood and marrow transplantation (asbmt) [ ], as well as guidelines from professional societies in japan [ ], chile [ ], and germany [ ], have not recommended routine application of prophylactic antibiotics for fever and neu- tropenia. in contrast, the national comprehensive cancer network guidelines and the updated asbmt guidelines [ , ] made the qualified recommendation to consider antibac- terial chemoprophylaxis for certain high-risk patients who are e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ anticipated to have prolonged and profound neutropenia (anc , cells/mm for . days[ ]) after publication of several studies suggesting a limited role for fluoroquinolone pro- phylaxis in selected high-risk patients [ , – ]. a meta-analysis of placebo-controlled or no treatment– controlled trials of fluoroquinolone prophylaxis demonstrated a relative risk reduction of % and % in all-cause mortality and infection-related mortality, respectively, among fluo- roquinolone recipients [ ], especially among recipients of ciprofloxacin (rr, . ; % ci, . – . ) [ ]. this survival advantage had not been shown in previous meta-analyses [ – , – ]. the majority of patients included in these studies had hematologic malignancies or received hsct, with durations of neutropenia typically . days, thus placing them at high risk for infection during neutropenia. levofloxacin prophylaxis was found by bucaneve et al [ ] to significantly reduce episodes of fever and the number of documented infections, most strikingly for gram-negative ba- cillary infections, in a prospective, randomized, double-blind, placebo-controlled trial performed exclusively among patients expected to have anc counts , cells/mm for . days. this study, combined with the meta-analysis data demonstrat- ing survival benefit [ ], indicates a potentially important role for levofloxacin prophylaxis in high-risk patients with cancer expected to develop profound neutropenia . days in duration. allogeneic hsct recipients and patients undergoing induction therapy for acute leukemia are the primary constituents of this high-risk group. however, because of the heterogenicity of the patient populations studied, some controversy remains re- garding precisely which patient groups are the most appropriate candidates for fluoroquinolone prophylaxis. for example, the randomized trial by bucaneve et al [ ] did not include allo- geneic hsct recipients, although it demonstrated beneficial effects in other patients with similar degrees of neutropenia. furthermore, although autologous hsct recipients also typi- cally experience . days of neutropenia after conditioning, they appear to be at lower risk for serious bacterial infections. ac- cordingly, many experts do not recommend fluoroquinolone prophylaxis for neutropenic autologous hsct recipients. some clinicians are reluctant to routinely use fluoroquinolones in children because of preclinical studies in animals that have suggested musculoskeletal toxicity. large surveys of fluo- roquinolone use in children who do not have cancer have not identified serious problems, although the drugs may be associ- ated with more musculoskeletal adverse effects, compared with other classes of antibiotics [ – ]. high-quality clinical trials have not assessed the risk-benefit ratio of fluoroquinolone prophylaxis in children, but it may be reasonable to use the drugs in very high-risk situations, such as allogeneic trans- plantation or induction therapy for acute leukemia. a second large randomized trial of levofloxacin prophylaxis examined only lower-risk patients with solid tumors or lymphoma and showed a % reduction in febrile episodes per chemotherapy cycle with prophylaxis but no effect on documented infections [ ]. given the low rate of fever in the placebo arm, up to patients per chemotherapy cycle would be necessary to prevent one febrile neutropenic episode, without any impact on all-cause mortality [ ]. therefore, routine use of fluoroquinolone chemoprophylaxis in low-risk patient populations is not rec- ommended. the potential for bacterial resistance to fluoroquinolone-based chemoprophylaxis is a substantial concern [ – ]. high use of fluoroquinolones in oncology patients has been linked to in- creases in infections due to fluoroquinolone-resistant e. coli [ ] and c. difficile enterocolitis [ – ], although recent meta- analyses have not shown an association [ , ]. individual cancer centers have reported increasing rates of resistance related to broad use of fluoroquinolones [ , , , ]. in cen- ters, discontinuing routine fluoroquinolone prophylaxis among patients with hematologic malignancy led to prompt reductions in bacterial resistance rates without a significant impact on in- fection-related morbidity [ , ]. one report, however, sug- gested that stopping fluoroquinolone prophylaxis in the setting of high rates of resistance may lead to an increase in morbidity [ ]. because staphylococci and microaerophilic viridans group streptococci are encountered among fluoroquinolone pro- phylaxis recipients, some authorities have advocated adding a gram-positive agent to the prophylactic regimen [ ]. combinations of a fluoroquinolone plus antibiotics with en- hanced activity against gram-positive organisms, including penicillins, rifampin, or macrolides, may reduce infections due to staphylococci and streptococci, as well as reduce the incidence of neutropenic fever, but they do not affect infection-related mortality [ – ]. increased rates of gastrointestinal upset and of breakthrough resistant gram-positive infections have limited the usefulness of this approach, and it is not recom- mended [ – , ]. the question of when to initiate and discontinue antibacterial chemoprophylaxis has not been systematically studied. many clinicians begin prophylaxis treatment with the first day of cy- totoxic therapy or the day following administration of the last dose of chemotherapy, and they stop at the termination of the neutropenic period or, for those patients who develop fever, at the initiation of empirical antibiotic therapy. vii. what is the role of empirical or preemptive antifungal therapy and which antifungal should be used? recommendations high risk . empirical antifungal therapy and investigation for invasive fungal infections should be considered for patients with persistent or recurrent fever after – days of antibiotics clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ and whose overall duration of neutropenia is expected to be . days (a-i). data are insufficient to recommend a specific empirical antifungal agent for a patient already receiving anti- mold prophylaxis, but switching to a different class of anti- mold antifungal given intravenously should be considered (b-iii). . preemptive antifungal management is acceptable as an alternative to empirical antifungal therapy in a subset of high- risk neutropenic patients. those who remain febrile after – days of broad-spectrum antibiotics but are clinically stable, have no clinical or chest and sinus ct signs of fungal infection, have negative serologic assay results for evidence of invasive fungal infection, and have no recovery of fungi (such as candida or aspergillus species) from any body site may have antifungal agents withheld (b-ii). antifungal therapy should be instituted if any of these indicators of possible invasive fungal infection are identified. low risk . in low-risk patients, the risk of invasive fungal infection is low, and therefore routine use of empirical antifungal therapy is not recommended (a-iii). evidence summary in this document, ‘‘empirical’’ anti- fungal therapy refers to initiation of an antifungal agent at the first possible clinical evidence of fungal infection, which is usually persistent or recrudescent fever on or after day of empirical antibiotic therapy. ‘‘preemptive’’ antifungal therapy refers to more-targeted, less broad treatment of only those pa- tients with additional findings suggestive of invasive fungal infection, such as serologic test results or chest ct findings. figure outlines a management algorithm for the use of em- pirical and preemptive antifungal therapy in persistently febrile neutropenic high-risk patients. empirical figure . high-risk patient with fever after days of empirical antibiotics. c. difficile, clostridium difficile; iv, intravenous. e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ high-risk patients who have received intensive cytotoxic chemotherapy are at risk for invasive fungal infection. yeast (primarily candida species) and molds typically cause in- fections, which are manifested by persistent or recurrent fever in patients with prolonged neutropenia, rather than causing initial fever in the course of neutropenia [ ]. because candida species are ubiquitous colonizers of human mucosal surfaces, they may cause bloodstream infection with mucosal barrier breakdown [ – ]. azole prophylaxis, primarily with flu- conazole, has significantly reduced the incidence of invasive candida infections in certain high-risk patients with cancer, but breakthrough infections due to azole-resistant strains may occur [ – ]. fluconazole lacks any activity against invasive mold infections, so it is useful only for candida pro- phylaxis. invasive mold infections, including aspergillosis (the most common invasive mold infection), zygomycosis, and fusariosis, occur almost exclusively in high-risk patients with profound neutropenia (< cells/mm ) lasting longer than – days [ – ]. at greatest risk are those treated for acute myelog- enous leukemia, for whom the incidence of invasive mold in- fection is of the order of times greater than that seen among patients with lymphoma and multiple myeloma [ ]. because clinical manifestations are nonspecific in the early stages of in- cubating infection, the diagnosis of invasive fungal infection is especially difficult. fever may be the lone sign of invasive fungal infection; therefore, to prevent late initiation of treatment, empirical antifungal therapy for persistent or recrudescent neutropenic fever syndrome has been the standard approach for many decades [ , ]. empirical antifungal therapy is instituted for the treatment of ‘‘occult’’ fungal infection presenting as persistent neutropenic fever despite – days of empirical antibiotic therapy [ ]. approximately %– % of neutropenic patients with cancer will receive an antifungal drug by these criteria, yet only � % have a demonstrated invasive fungal infection [ – ]. given that fever is an especially nonspecific surrogate for invasive fungal infection, the true utility of requiring empirical antifungal therapy for every neutropenic patient on the basis of persistent fever alone must be questioned. the choice of empirical anti- fungal agent depends upon likely fungal pathogens, toxicities, and cost. if antifungal prophylaxis has not been given, then candidemia is initially the greatest concern. for patients re- ceiving fluconazole prophylaxis, fluconazole-resistant candida infections, such as those due to candida krusei or candida glabrata, or an invasive mold infection are more likely because the drug lacks anti-mold activity. amphotericin b desoxycholate (a polyene antifungal) has been the standard empirical choice for over decades; however, a number of trials have identified roles for other antifungal agents, including liposomal ampho- tericin b, amphotericin b colloidal dispersion, amphotericin b lipid complex (alternate formulations of amphotericin b), itraconazole or voriconazole (azoles with mold activity), and caspofungin (the first available echinocandin antifungal) [ , – ]. although none of these alternatives have proven to have an efficacy advantage, they have generally been less toxic than the original parent drug, amphotericin b des- oxycholate. although voriconazole failed to meet the strict statistical measurement of noninferiority when compared with liposomal amphotericin b [ ], most clinicians regard it as a reliable alternative [ – ]. there are insufficient data upon which to base a specific empirical antifungal choice for patients already receiving mold-active prophylaxis, but a switch to an iv anti-mold agent within a different antifungal class seems prudent. this suggestion is based on the evidence that fungal infection breakthroughs may be related to in- adequate serum levels of voriconazole or posaconazole when they are given orally [ – ]. in the absence of changes visible on ct, and if serum levels of anti-mold azole pro- phylaxis are adequate, continuing the same mold-active pro- phylaxis may be an acceptable alternative. preemptive advances in the early detection of fungal infections have prompted a critical re-assessment of whether empirical anti- fungal therapy is mandatory for all persistently febrile neu- tropenic patients. such approaches include serum tests for fungal antigens or dna and high-resolution chest ct [ – ]. with preemptive treatment, antifungal therapy is given only when evidence of invasive infection is suggested by one of these tests. although it is attractive, preemptive anti- fungal therapy currently remains largely experimental and is not standard of practice. ct may reveal abnormalities in either the lungs or the sinuses. macronodules with or without a halo sign are the most typical findings associated with invasive aspergillosis on chest ct at the initial diagnosis and are evident during neutropenia [ , – ]. the halo sign represents edema or blood surrounding the nodule [ ]. other later manifestations include nodular, wedge-shaped, peripheral, multiple, or cavitary lesions. an air- crescent sign is insensitive and generally appears late, if at all [ ]. preemptive initiation of antifungal therapy directed against aspergillus on the basis of finding a halo sign has bee- n associated with significantly improved survival [ – , ]. two serum fungal diagnostic tests, the b-( - )-d glucan test and the galactomannan test, may aid in the detection of com- mon invasive fungal infections. they are not recommended for low-risk patients. the sensitivity of a single serum test is ex- tremely low, and a single negative result should not be used to rule out the diagnosis of an invasive fungal infection. serial serum monitoring for either of these fungal wall elements can be used to guide initiation of preemptive antifungal therapy in high-risk patients. clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ the b-( - )-d glucan test detects most of the relevant fungal pathogens, including candida species, aspergillus species, pneumocystis species, and fusarium species (but not the zy- gomycetes agents or cryptococcus species), with high levels of sensitivity and specificity reported in small studies [ – ]. among patients with aml or mds undergoing chemotherapy, b-( - )-d glucan assay has been found to be %– % sensitive and . % specific for early detection of proven or probable fungal infections, including candidiasis, fusariosis, tricho- sporonosis, and aspergillosis [ – ]. a positive test result preceded clinical symptoms of invasive fungal infection in many patients. experience with use of the b-( - )-d glucan assay in hsct recipients is limited [ ] and requires further study. of note, hemodialysis, hemolysis, serum turbidity, hyperlipidemia, visible bilirubin, use of blood products including immuno- globulin and albumin, bacteremia, and the specimen’s exposure to gauze may confound interpretation of the test. the galactomannan assay detects only aspergillus species (and penicillium species, which is a rare pathogen in the united states) and does not detect other pathogenic fungi, although cross-reactivity to histoplasma capsulatum has been described [ ]. in various studies of prospective serial serum gal- actomannan testing in high-risk patients, sensitivity has ranged widely among different patient populations and has depended upon the optical density cutoff used to define a positive test [ – ]. in patients with hematologic malignancies or hsct, galactomannan sensitivity was only %– % and specificity was only %– % [ ]. the test should be used only for patients at risk for aspergillus infection. the performance of the galactomannan assay may be confounded by concomitant use of b-lactam/b-lactamase combinations, such as piperacillin- tazobactam (false positives) or anti-mold antifungal agents (false negatives) [ ]. preliminary work has suggested that galactomannan detection in bal fluid [ ] may be a useful adjunct with excellent specificity and � % sensitivity, com- pared with � % sensitivity for bal fungal culture [ – ]. polymerase chain reaction (pcr) assays for fungal detection in blood and bal fluid are also being developed and tested, but none are yet commercially available [ ]. the current evidence, reviewed below, suggests that evolving diagnostic methods may lead to better targeting of those febrile patients in need of pre- emptive antifungal therapy as an alternative to broad use of empirical antifungals [ ]. preemptive management, using a combination of clinical, serologic, and ct evidence to initiate antifungal therapy, has been evaluated in several trials. in a pilot study by maertens et al [ ], serial serum galactomannan tests and early ct were applied prospectively in a preemptive treatment algorithm that lead to a nearly % reduction (from % to %) in the use of antifungals among neutropenic patients who would other- wise have qualified for empirical antifungal treatment on the basis of persistent or recurrent fever, without compromising outcomes. more recently, cordonnier et al [ ] demonstrated, in a randomized trial, that preemptive antifungal therapy was a safe alternative to empirical antifungal therapy in a selected group of high-risk neutropenic patients. patients undergoing aml induction treatments, consolidation therapy, and autolo- gous transplantation and other patients with prolonged neu- tropenia were evaluated, but allogeneic hsct recipients were excluded. preemptive therapy was initiated on the basis of clinical symptoms or chest ct findings suggestive of an invasive fungal infection and/or mycological evidence, such as aspergillus colonization or a positive galactomannan test result. although overall rates of mortality were not different between patients randomized to preemptive versus empirical antifungal therapy, there were more episodes of invasive fungal infection and a trend toward more fungal-related deaths among those treated with preemptive therapy [ ]. the difference in invasive fungal infection was seen only in the subset of patients who were not given antifungal prophylaxis ( % of the patients entered into the study), which was administered at the discretion of each center. the outcome difference was due to more candida in- fections occurring in the preemptive group, which did not re- ceive antifungal prophylaxis [ – ]. antifungal therapy was given to fewer patients in the preemptive arm than in the em- pirical therapy arm. hebart and colleagues compared empirical antifungal therapy versus pcr-driven preemptive antifungal therapy after allogeneic stem cell transplant [ ] in patients receiving anti-yeast prophylaxis. the investigators demonstrated increased use of anti-fungal therapy and reduced -day mortality in the pcr-driven arm, but no difference in pro- ven/probable invasive fungal infections or -day survival. these and other studies support the concept that certain high- risk febrile neutropenic patients receiving anti-yeast prophylaxis may be exempted from automatic receipt of empirical antifungal therapy if in a structured monitoring program and if specific criteria are met [ , – ]. however, if a serum fungal antigen marker (galactomannan or , -b-d-glucan), a chest or sinus ct, or specific clinical signs or symptoms implicate a possible invasive fungal infection, then antifungal therapy that covers a broader range of fungal pathogens, including molds, should be quickly applied using one of the broad-spectrum antifungals that has documented efficacy in the empirical set- ting. a number of important issues about preemptive therapy require further study: the optimal trigger (clinical or radiological manifestations versus a serum biomarker), which biomarker should be used (antigen or pcr test), timing (early before clinical manifestations or late after clinical manifestations), and which antifungals provide the most appropriate spectrum of activity. another important unresolved question is use of the preemptive antifungal approach in patients who are already receiving anti-mold prophylaxis [ ]. e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ viii. when should antifungal prophylaxis be given and with what agents? recommendations high-risk . prophylaxis against candida infections is recommended in patient groups in whom the risk of invasive candidal infections is substantial, such as allogeneic hsct recipients or those undergoing intensive remission-induction or salvage induction chemotherapy for acute leukemia (a-i). fluconazole, itraconazole, voriconazole, posaconazole, micafungin, and caspofungin are all acceptable alternatives. . prophylaxis against invasive aspergillus infections with posaconazole should be considered for selected patients > years of age who are undergoing intensive chemotherapy for aml/mds in whom the risk of invasive aspergillosis without prophylaxis is substantial (b-i). . prophylaxis against aspergillus infection in pre- engraftment allogeneic or autologous transplant recipients has not been shown to be efficacious. however, a mold-active agent is recommended in patients with prior invasive aspergillosis (a-iii), anticipated prolonged neutropenic periods of at least weeks (c-iii), or a prolonged period of neutropenia immediately prior to hsct (c-iii). low-risk . antifungal prophylaxis is not recommended for patients in whom the anticipated duration of neutropenia is , days (a-iii). evidence summary candida infection. fluconazole prophylaxis is effective in re- ducing the risk of candida infections in neutropenic patients, is well tolerated, and is available in both oral and iv formulations [ , – ]. the epidemiology of candidemia has changed with the broad use of fluconazole prophylaxis, which has led to an increase in candida species (eg, c. glabrata and c. krusei) that are less susceptible to fluconazole [ ]. c. glabrata infection is common in some centers. accordingly, there is reason to limit fluconazole prophylaxis to only those patients who are at sub- stantial risk for invasive infection. the threshold incidence of candida infection at which fluconazole prophylaxis appears to be efficacious is %– % in controlled studies and in meta- analyses of prophylaxis [ – ]. candida infection rates at this level are usually seen among high-risk patients with cancer who are not receiving prophylaxis. these include pre-engraftment allogeneic hsct recipients receiving myeloablative conditioning regimens, some autolo- gous hsct recipients unsupported by hematopoietic growth factors, and patients undergoing intensive induction chemo- therapy regimens for aml with severe oral and gastrointestinal mucositis [ , ]. among lower-risk patient populations, invasive candidiasis is rare [ ] and generally does not merit routine fluconazole prophylaxis. voriconazole prophylaxis has also proven to be as effective as fluconazole or itraconazole for candida prophylaxis in patients undergoing allogeneic stem cell transplant, and its ability to prevent possible fungal infections in high-risk leukaemic patients is promising [ – ]. prophylaxis with micafungin or caspofungin is efficacious and well-tolerated for the prevention of candidiasis and invasive aspergillosis in high-risk patients [ , ]. the high cost and need for parenteral administration are limitations of these agents. it should be emphasized that fluconazole will not pro- vide preventive coverage against invasive aspergillosis or other molds. the toxicity of amphotericin b desoxycholate makes it less desirable for prophylactic use, despite its very broad anti- fungal activity. in trials of posaconazole prophylaxis for high- risk patients, in which the major goal was mold prevention, low rates of invasive candidiasis were observed; by inference, pos- aconazole is a reasonable recommendation for candida pro- phylaxis in the high risk group [ , ]. aspergillus infection. the need for aspergillus prophylaxis among neutropenic high-risk patients varies according to the disease and chemotherapy regimen (eg, induction for acute leukemia or myelodysplastic syndrome and pre-engraftment allogeneic hsct); efficacy varies by antifungal agent (eg, itra- conazole, voriconazole, and posaconazole) [ , , , , , – ]. patients with aml. for patients with aml who experience induction therapy–related prolonged neutropenia, prophylaxis is beneficial when the baseline rate of invasive aspergillosis is at least % [ , ]. this antifungal prophylactic benefit has not been established for post-remission consolidation therapy for acute leukemia and is not routinely recommended. among adult and adolescent patients (. years of age) who receive induction chemotherapy for aml or intensive treatment for advanced mds, posaconazole prophylaxis, compared with itraconazole or fluconazole, was associated with significantly fewer aspergillus infections and improved survival but with more-serious adverse events, compared with a heterogeneous control group heavily weighted by fluconazole recipients [ ]. posaconazole is currently available only in an oral formulation, and its oral absorption is highly dependent upon concomitant intake of a high fat meal with each dose [ , ]. its bio- availability is variable and unreliable if not taken in conjunction with food [ – ]. drug interactions with chemotherapy agents, such as cyclophosphamide, and the vinca alkaloids, such as vincristine, which are also metabolized by the liver, are a po- tential concern associated with posaconazole and other mold- active azoles that are used in acute leukemia therapy [ – ]. co-administration of mold-active triazole-based prophylaxis with vinca alkaloids or high doses of cyclophosphamide and anthracyclines should be avoided until these interactions have been better studied. clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ oral itraconazole has activity against aspergillus, but its prophylactic utility is hampered by a paucity of clinical trial data showing an anti-aspergillus effect. one meta-analysis demon- strated a protective effect limited to trials that used itraconazole oral solution doses of mg twice a day; however, the oral solution is rarely employed because of poor tolerability [ , ]. although voriconazole is used for prophylaxis in some centers, no large randomized studies involving patients with aml or mds have been performed to date. allogeneic hsct recipients. after allogeneic hsct, there are distinct periods of risk for invasive mold infections: the first during the neutropenic pre-engraftment phase and the second during the post-engraftment period, when a patient develops graft-versus-host disease (gvhd), which requires immuno- suppressive treatment. the focus of this guideline is the initial risk period during neutropenia. fluconazole is an effective prophylactic antifungal in allogeneic hsct recipients when used from the onset of conditioning, through neutropenia, and extended to at least day after receipt of transplant. however, fluconazole lacks anti-mold coverage; its prophylactic efficacy in the hsct population can be attributed to prevention of invasive candidiasis [ ]. because allogeneic hsct recipients are at risk for invasive molds as well as for candida infections, it stands to reason that broader-spectrum antifungal agents, such as late- generation azoles, would provide more effective prophylaxis. a randomized, double-blind trial compared voriconazole to fluconazole as prophylaxis for allogeneic hsct recipients until days after transplantation, using a concurrent structured intensive galactomannan screening monitoring program [ ]. in a preliminary analysis, each group had a similar rate of fungal infection and fungal-free survival, although there was a trend toward fewer aspergillus infections among patients receiving voriconazole. there were no differences in toxicities. these data suggest that both fluconazole and voriconazole provide long- term antifungal prophylaxis in allogeneic hsct recipients. a recent comparative open trial of voriconazole and itraco- nazole among allogeneic hsct recipients demonstrated fewer interruptions of study drug and a trend to fewer fungal infections among those who received voriconazole but comparable survival at and days. there were more adverse gastrointestinal events associated with itraconazole but more adverse visual and hepatic events associated with voriconazole [ ]. consid- erations that may influence the choice of antifungal therapy include prior aspergillus infection, risk for gvhd (which is an important predictor of invasive aspergillosis), and cost. additionally, because prolonged durations of neutropenia are associated with the development of invasive aspergillosis, many experts would recommend a mold-active agent for prophylaxis in hsct recipients with anticipated prolonged neutropenic periods of at least days or those with a lengthy duration of neutropenia immediately prior to hsct. finally, in leukaemic patients with prior recent history of invasive mold infection, the administration of mold-active agents appeared to reduce the risk of reactivation during hsct conditioning [ – ]. although routine azole drug level monitoring during prophylaxis is not recommended, low levels of the oral mold-active azoles have been noted [ , – ]. therefore, drug level monitoring may aid in deci- sions about dosing in some patients. the appropriate duration of anti-mold prophylaxis in high- risk patients is uncertain. prophylaxis stop-dates for patients with acute leukemia generally coincide with myeloid re- constitution. hsct allograft transplant recipients should receive prophylaxis through the neutropenic period and beyond, be- cause a survival advantage has been demonstrated for patients who continue antifungal prophylaxis long after engraftment, for at least days after transplant [ ], or until cessation of im- munosuppressive therapy [ ]. ix. what is the role of antiviral prophylaxis and what virus infections require antiviral treatment? recommendations . hsv-seropositive patients undergoing allogeneic hsct or leukemia induction therapy should receive acyclovir antiviral prophylaxis (a-i). . antiviral treatment for hsv or vzv is only indicated if there is clinical or laboratory evidence of active viral disease (c- iii). . respiratory virus testing (including testing for influenza, parainfluenza, adenovirus, rsv, and human metapneumovirus) and chest radiography are indicated for patients with upper respiratory symptoms (eg, coryza) and/or cough (b-iii). . yearly influenza vaccination with inactivated vaccine is recommended for all patients being treated for cancer (a-ii). optimal timing of vaccination is not established, but serologic responses may be best between chemotherapy cycles (. days after the last treatment) or . weeks before chemotherapy starts (b-iii). . influenza virus infection should be treated with neuraminidase inhibitors if the infecting strain is susceptible (a-ii). in the setting of an influenza exposure or outbreak, neutropenic patients presenting with influenza-like illness should receive treatment empirically (c-iii). . routine treatment of rsv infection in neutropenic patients with upper respiratory disease should not be given (b-iii). evidence summary herpes viruses prophylaxis with an hsv-active agent, such as acyclovir, should be offered to all hsv-seropositive autologous or allo- geneic hsct recipients [ ] and patients with acute leukemia e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ undergoing induction or reinduction therapy [ ]. prophylaxis should be given until recovery of the white blood cell count or resolution of mucositis, whichever occurs later. duration of prophylaxis can be extended for persons with frequent recurrent hsv infections or those with gvhd or can be continued as vzv prophylaxis for up to year [ ]. empirical use of antiviral drugs is generally not indicated in the management of other febrile neutropenic patients with cancer. treatment of active hsv or vzv infection should be given to all patients. other herpesvirus infections occur in the post-hsct setting, including infections due to cytomegalovirus and human her- pesvirus . however, neutropenia is not a predisposition to reactivation of either virus; thus, prevention strategies for these herpes viruses are not discussed in this document [ ]. respiratory viruses all patients with cancer and their household contacts should be immunized against influenza with inactivated influenza vaccine on a yearly basis. despite the lack of conclusive data about vaccine efficacy, inactivated influenza vaccine may yield adequate serologic responses in some patients treated for solid tumors [ – ]. live attenuated formulations of in- fluenza vaccine should be avoided in patients who are receiving chemotherapy cycles or are within months after the end of therapy. however, family members of patients with cancer may receive the live attenuated influenza vaccination. with the ad- vent of new strains of influenza, such as the h n pan- demic strain, it is important that the most-current available vaccines for each season be given promptly [ ]. the optimal timing of influenza vaccination in patients who are being ac- tively treated for solid tumor and lymphoma has not been es- tablished. it is possible that influenza vaccination responses may be best between chemotherapy cycles (. days after the last treatment) or . weeks before chemotherapy starts [ , – ]. hsct recipients usually respond best to influenza vaccination if vaccinated at . months after transplantation. if an exposure to influenza occurs, days of post-exposure treatment with anti-influenza antivirals (eg, oseltamivir or zanamivir) is recommended for the neu- tropenic patient regardless of vaccination status [ ]. patients with respiratory complaints, including cough and nasal congestion or a pulmonary infiltrate noted on chest ra- diograph during the peri-transplant period, should be evaluated by examination of nasopharyngeal swab or washing specimens. the specimen can be tested by pcr, direct antigen assay, or culture for respiratory viruses (including influenza, para- influenza, adenovirus, rsv, and human metapneumovirus) [ ]. neutropenic patients infected with these respiratory vi- ruses may be afebrile and may lack ‘‘classic’’ systemic symptoms, such as myalgia and fatigue [ ]. if influenza is suspected ep- idemiologically, empirical therapy with an anti-influenza agent (eg, oseltamivir and zanamivir) should be initiated while test results are pending. in the setting of an influenza outbreak, aggressive infection control measures should be instituted to halt further nosocomial spread [ ]. delay in chemotherapy or in the start of the hsct conditioning regimen should be consid- ered for patients with acute respiratory viral infections until the infection is controlled, if feasible. some experts believe that documented influenza virus infection should be treated even if the diagnosis is made . h after the start of symptoms [ – ]. although aerosolized and oral administration of ribavirin has been used, there is no antiviral agent proven to be effective against parainfluenza virus [ ]. similarly, there is no clear evidence from randomized trials that aerosolized or oral riba- virin or any other antiviral is effective against rsv pneumonia. no agent been shown to prevent rsv upper respiratory in- fection from progressing to rsv pneumonia, although a modest effect had been observed in a retrospective analysis [ ]. some experts employ ribavirin for rsv upper respiratory tract in- fection in patients with profound lymphocytopenia. mono- clonal antibody (palivizumab) and rsv immunoglobulin also do not appear to prevent or attenuate rsv upper respiratory infection or progression to pneumonia [ ]. there is no proven effective therapy for adenovirus infection, although some experts would employ cidofovir or ribavirin for clinically significant adenovirus disease [ ]. x. what is the role of hematopoietic growth factors (g-csf or gm-csf) in managing fever and neutropenia? recommendations . prophylactic use of myeloid csfs (also referred to as hematopoietic growth factors) should be considered for patients in whom the anticipated risk of fever and neutropenia is > % (a-ii). . csfs are not generally recommended for treatment of established fever and neutropenia (b-ii). evidence summary prophylactic use of myeloid csfs has been shown to reduce the incidence of neutropenic fever in a variety of studies and, in meta-analyses, also was associated with reductions in infection-related mortality and all-cause mortality [ – ]. authoritative evidence-based guidelines have indicated that clinical benefits from prophylactic csfs accrue when the risk of neutropenic fever associated with a chemotherapy regimen is > %, unless the treatment is symptomatic or palliative, in which cases dose reduction is usually appropriate [ – ]. however, because of their high expense, it is not clear that csf prophylaxis, when given widely to patients who are at the threshold of % risk of fever and neutropenia, is cost-effective in all health care markets clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ [ – ]. if societal costs are considered, the economic impact of fever and neutropenia becomes more apparent, and there may be recognition of greater cost-saving benefits of csfs [ ]. primary prophylaxis—the use of csfs for prevention in the first cycle of treatment for many solid tumors—does appear to re- duce the incidence of fever and neutropenia and is likely to be most cost-effective. csf prophylaxis should be especially con- sidered for older patients or if the presence of additional risk factors, including prior fever and neutropenia, poor nutritional or performance status, no antibiotic prophylaxis, comorbid medical conditions, or other modifying disease characteristics, suggests that there is substantial risk of fever and/or severe in- fection during neutropenia [ – ]. if the risk is < %, the benefit is low, and csfs are generally not recommended. if given, csf treatment should be started immediately after the chemotherapy is completed. myeloid csfs are not recommended as adjuncts to antibiotics for treating established fever and neutropenia. although days of neutropenia, duration of fever, and length of hospital stay have been minimally (but statistically significantly) decreased in some randomized studies, the actual clinical benefit of these reduc- tions is not convincing [ – ]. none of the studies have demonstrated a survival benefit associated with therapeutic csfs. given the cost of and adverse effects associated with the csfs, as well as the lack of consistent clinical data, addition of g-csf or gm-csf at the onset of fever and neutropenia is generally not advocated by the panel. xi. how are catheter-related infections diagnosed and managed in neutropenic patients? recommendations . dtp . min of qualitative blood cultures performed on specimens simultaneously drawn from the cvc and a vein suggests a clabsi (a-ii). . for clabsi caused by s. aureus, p. aeruginosa, fungi, or mycobacteria, catheter removal is recommended in addition to systemic antimicrobial therapy for at least days (a-ii). catheter removal is also recommended for tunnel infection or port pocket site infection, septic thrombosis, endocarditis, sepsis with hemodynamic instability, or bloodstream infection that persists despite > h of therapy with appropriate antibiotics (a-ii). . for documented clabsi caused by coagulase- negative staphylococci, the catheter may be retained using systemic therapy with or without antibiotic lock therapy (b-iii). . prolonged treatment ( – weeks) is recommended for complicated clabsi, defined as the presence of deep tissue infection, endocarditis, septic thrombosis (a-ii), or persistent bacteremia or fungemia occurring . h after catheter removal in a patient who has received appropriate antimicrobials (a-ii for s. aureus, c-iii for other pathogens). . hand hygiene, maximal sterile barrier precautions, and cutaneous antisepsis with chlorhexidine during cvc insertion are recommended for all cvc insertions (a-i). evidence summary in addition to the gastrointestinal tract, the cvc is a major source of bloodstream infections in the neutropenic patient population [ , – ]. the hub/ lumen of the catheter is the major site of colonization and source of the clabsi [ ]. accordingly, clabsi is most commonly caused by colonizers of the skin and mucosa, in- cluding coagulase-negative staphylococci, s. aureus, and candida species. less common organisms include bacillus species, corynebacterium jk, enterococci (including vre), rapidly growing mycobacteria, and non-fermentative gram- negative bacilli [ ]. a useful diagnostic tool for diagnosing clabsi is the dtp of blood cultures performed on specimens drawn simultaneously through the catheter and peripheral vein. the premise of the test is that, when the catheter is the source of bacteremia, the con- centration of organisms will be extremely high in the hub/lu- men, resulting in a rapidly positive culture. studies have suggested that a cvc blood culture that becomes positive at least min earlier than a simultaneously drawn peripheral vein blood culture indicates that the catheter is likely to be the source of infection [ , – ]. therefore, during initial assessment of fever and neutropenia and prior to antibiotic administration, specimens for blood culture sets should be drawn simultaneously from each catheter lumen and from a peripheral vein. once antibiotic therapy has been started, dtp might not be reliable. catheter removal is considered in most clabsis. the de- cision rests largely on the organism(s) isolated. for example, although bacteremia with coagulase-negative staphylococci is common among neutropenic patients, the pathogen is of low virulence; management often does not require catheter removal and can usually be achieved with vancomycin given through the infected catheter lumen(s). in contrast, clabsi with s. aureus, gram-negative bacilli (such as p. aeruginosa), or candida species typically requires catheter removal along with sys- temic antimicrobial treatment for optimal outcomes [ – ]. in some patients, catheter removal is not feasible be- cause of thrombocytopenia, the hazards associated with reimplantation during neutropenia, or the absence of other vascular access sites. in cases in which the catheter must be retained, it is prudent to prolong the antimicrobial iv sys- temic therapy, particularly in the case of s. aureus and gram- negative bacillary bacteremia. anecdotal data suggest that antibiotic lock therapy might be useful in salvaging some of the long-term catheters [ – ]. however, strategies such e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ as antibiotic lock therapy are currently being studied and cannot be routinely recommended at this time for salvage treatment or for prophylaxis. the duration of systemic antimicrobial therapy depends on several factors, including whether the catheter was removed or retained, response to antimicrobial therapy within – h (resolution of fever and bacteremia), and whether complicated infection (deep tissue infection, septic thrombosis, or endo- carditis) [ ] is present. in general, for organisms other than coagulase-negative staphylococci, a -day course of systemic antimicrobial therapy is adequate in the neutropenic patient if the catheter is removed, if the patient responds to antimi- crobial therapy within h, and if the clabsi is un- complicated by deep-tissue infection [ ]. however, a recent study suggests that s. aureus clabsi in patients with cancer (including neutropenic patients) may require longer than weeks of antimicrobial therapy because of an increased in- cidence of complications associated with shorter courses of treatment [ ]. clabsi due to any pathogen that is com- plicated by disseminated or deep infection requires – weeks of antimicrobial therapy [ ]. transthoracic echocardio- gram may be the only modality available for assessment of valves, because transesophageal echocardiogram may be de- layed until resolution of neutropenia and concurrent thrombocytopenia. hand hygiene, maximal sterile barrier precautions, cutaneous antisepsis with chlorhexidine during catheter insertion, and antimicrobial catheters have been shown to be useful in pre- venting catheter-related bloodstream infections [ ]. further specifics as to the management of the catheter and the duration of antimicrobial therapy for long-term catheter-related blood- stream infections have been outlined in the idsa guidelines for the management of intravascular catheter–related infections [ ]. xii. what environmental precautions should be taken when managing febrile neutropenic patients? recommendations . hand hygiene is the most effective means of preventing transmission of infection in the hospital (a-ii). . standard barrier precautions should be followed for all patients, and infection-specific isolation should be used for patients with certain signs or symptoms (a-iii). . hsct recipients should be placed in private (ie, single- patient) rooms (b-iii). allogeneic hsct recipients should be placed in rooms with . air exchanges/h and hepa filtration (a-iii). . plants and dried or fresh flowers should not be allowed in the rooms of hospitalized neutropenic patients (b-iii). . hospital work exclusion policies should be designed to encourage hcws to report their illnesses or exposures (a-ii). ¤ hand hygiene hand hygiene is the most effective means of preventing hospital-acquired infections [ ]. all persons, including hcws, must sanitize their hands before entering and after leaving the rooms of neutropenic (and all other) patients. isolation and barrier precautions no specific protective gear (eg, gowns, gloves, and masks) is required during the routine care of neutropenic patients. however, as with other hospitalized patients, when contact with body fluids is anticipated, standard barrier precautions should be followed [ ]. patients with neutropenia, other than hsct recipients, do not need to be placed into a single-patient room. hsct recipients should be placed in private (ie, single-patient) rooms. ¤ food a ‘‘neutropenic diet’’ typically is given to patients with neu- tropenia. this usually consists of well-cooked foods. prepared luncheon meats should be avoided. well-cleaned, uncooked raw fruits and vegetables are acceptable, as are cooked foods brought from home or restaurants, provided that the freshness of in- gredients and the means of preparation can be confirmed [ ]. in a small randomized trial, cooked and noncooked food diets were compared; avoidance of raw fruits and vegetables did not prevent major infection or death [ ]. ¤ room ventilation most patients with neutropenia do not require specific room ventilation. all allogeneic hsct recipients, however, should be placed in rooms with . air exchanges/h [ ] and hepa filtration. the air pressure in the patient rooms should be positive compared with adjoining areas, such as hallways, toilets, and anterooms. ¤ patient skin and oral care to optimize skin integrity, patients should take daily showers or baths during any hospitalization for cancer therapy or com- plication. skin care during neutropenia should also include daily inspection of skin sites likely to be portals of infection (eg, the perineum and intravascular access sites). patients should maintain good perineal hygiene; to facilitate this, hospitals should develop protocols for perineal care, including recom- mendations for gentle but thorough perineal cleaning after bowel movement and thorough drying of the perineum after urination. females should wipe the perineum from front to back after using the toilet to prevent contamination. menstruating immunocompromised patients should not use tampons, which can be abrasive. rectal thermometers, enemas, suppositories, and rectal examinations are contraindicated for patients with neutropenia [ ]. clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ patients and their caregivers should be taught how to main- tain good oral and dental hygiene during neutropenia. for those with ongoing mucositis, this includes oral rinses – times/day with sterile water, normal saline, or sodium bicarbonate solutions. patients should brush their teeth > times/day with a soft regular toothbrush. if this cannot be tolerated, an ultrasoft toothbrush or toothette (ie, foam swab on a stick) can be used, but physicians should be aware that toothettes remove less dental debris. using toothpaste is optional. daily dental flossing can be done if it can be accomplished without trauma. to decrease the risk for mechanical trauma and infection of oral mucosa, fixed orthodontic appliances and space main- tainers should not be worn during neutropenia until mucositis resolves. ¤ plants and animals plants and dried or fresh flowers should not be allowed in the rooms of hospitalized neutropenic patients, because molds, in- cluding aspergillus and fusarium species, have been isolated from the soil of potted ornamental plants (eg, cacti), the surfaces of dried flower arrangements, and fresh flowers [ ]. household pets that might be brought to the hospital for pet therapy should not be allowed onto the ward where patients with neutropenia are housed. ¤ hcws and visitors vaccination of hcws and visitors, including annual in- fluenza, measles, mumps, rubella, and varicella vaccination (if indicated), are recommended to prevent transmission of vac- cine-preventable diseases to patients with cancer [ ]. hcws or visitors who are currently symptomatic with in- fections transmissible by air, droplet, and direct contact (eg, vzv infection, infectious gastroenteritis, hsv lesions on lips or fingers, and upper respiratory tract infections) should not en- gage in patient care or visit patients unless appropriate barrier (eg, mask and glove) protection is established. for hcws, work exclusion policies should be designed to encourage hcws to report their illnesses or exposures. ¤ infection control surveillance in the absence of epidemiologic clusters of infections, in- fection control personnel should not perform routine bacterial surveillance cultures of the environment or of equipment or devices. [ ]. cancer centers caring for patients at high-risk for invasive mold infection (such as hsct recipients or patients with leu- kemia) should routinely monitor the number of aspergillosis cases. a -fold or greater increase in the attack rate of asper- gillosis during any -month period should prompt an exami- nation of the environment, observation of staff for breaks in infection control technique and procedures, and inspection of the ventilation system. the role of routine screening for problematic pathogens, such as vre and mrsa, is still being defined. many experts recommend this approach for high-risk patients [ , ]. performance measures . all patients with fever and neutropenia should be evaluated for level of risk (high or low), have history and physical examination performed, have cultures and radiological tests performed, and initiate treatment with broad-spectrum empirical antibiotics promptly (ie, within h of presentation). in the absence of effector cells, primarily neutrophils, signs and symptoms of inflammation may be lacking and rapid progression of invasive bacterial infections may occur, so antibiotics are a life-saving measure in this situation. however, the collection of clinical and laboratory data that will locate a potential site or cause of infection is critical prior to the initiation of antibiotics. . antimicrobial changes or additions to the initial empirical antibiotic regimen should be based on clinical, radiographic, or microbiological evidence of infection and not on the persistence of fever alone in a patient whose condition is otherwise stable. an exception is that empirical antifungal therapy should be started after – days of fever that does not respond to empirical antibiotic therapy. . low-risk patients who are anticipated to have a short duration of neutropenia (, days) do not require antibiotic prophylaxis. acknowledgments we acknowledge the help of jill kestel, who was instrumental in reviewing this document for accuracy, and thank drs. ronald feld, phillip pizzo, and monica slavin, for their thoughtful review of earlier drafts of the guideline. it is important to realize that guidelines cannot always account for individual variation among patients. they are not intended to supplant physician judgment with respect to particular patients or special clinical situations. the infectious diseases society of america considers adher- ence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances. financial support. infectious disease society of america. potential conflicts of interest. a.g.f. is a member of the advisory panel for the national comprehensive cancer network guidelines for ‘‘prevention and treatment of infections in patients with cancer’’; has received research support from merck, pfizer, enzon, astellas, and chimerix; and has served as a consultant to enzon. m.j.b. has received research support from roche laboratories, viropharma, vical, novartis, and arrow therapeutics; has served as a consultant to viropharma, roche laboratories, novartis, and aicuris; and has given lectures for roche and pfizer. i.i.r. has received grants from cubist, schering-plough, versicor, enzon, astellas pharma us, pfizer, cook, and wyeth; has served on the speakers’ bureau of merck, pfizer, and cook; and has received royalties related to patents licensed to cook, akorn, american medical systems, horizon medical products, and tyrx as a co-inventor. j.i.i. has received honoraria from astellas, enzon, pfizer, schering-plough (now merck), and cubist and serves as an advisor to enzon. j.h.y. has served on the speakers’ bureaus of schering-plough, astellas pharma, and pfizer; has served as a consultant to merck and schering-plough; and has conducted clin- ical trials for schering-plough, astellas pharma, pfizer, merck, and e d cid : ( february) d freifeld et al a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://cid.oxfordjournals.org/ viropharma. j.r.w. has received honoraria from merck, pfizer, astellas, and schering-plough and has served as a consultant to pfizer, merck, as- tellas, basilea, and nektar. k.v.r. has served as a consultant to astellas and received research grants from cubist, astellas, and merck. e.j.b. has re- ceived honoraria from merck-frosst, pfizer, astellas, and schering-plough and has served as a consultant to pfizer, merck-frosst, astellas, amgen, and wyeth. all other authors: no conflicts. references . hughes wt, armstrong d, bodey gp, et al. guidelines for the use of antimicrobial agents in neutropenic patients with cancer. clin infect dis ; 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( ). "information for healthcare professionals: cefepime (marketed as maxipime)." retrieved june , , from http://www.fda.gov/drugs/drugsafety/ postmarketdrugsafetyinformationforpatientsandproviders/ drugsafetyinformationforheathcareprofessionals/ucm .htm. . national comprehensive cancer network (nccn). ( ). "pre- vention and treatment of cancer-related infections v. ." retrieved august, , from (http://www.nccn.org/professionals/physician_ gls/f_guidelines.asp#supportive). clinical practice guideline d cid : ( february) d e a t u n ive rsity o f w isco n sin m a d iso n - g e n e ra l l ib ra ry s yste m o n f e b ru a ry , cid .o xfo rd jo u rn a ls.o rg d o w n lo a d e d fro m http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#supportive http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#supportive http://cid.oxfordjournals.org/ the effects of labyrinth walking in an academic library.pdf university of massachusetts amherst from the selectedworks of donna m. zucker spring may , the effects of labyrinth walking in an academic library.pdf donna m zucker, rn, phd, faan jeung choi, university of massachusetts - amherst matthew n. cook, university of oklahoma norman campus janet brennan croft available at: https://works.bepress.com/donna_zucker/ / http://www.umass.edu https://works.bepress.com/donna_zucker/ https://works.bepress.com/donna_zucker/ / full terms & conditions of access and use can be found at http://www.tandfonline.com/action/journalinformation?journalcode=wjla download by: [ . . . ] date: may , at: : journal of library administration issn: - (print) - (online) journal homepage: http://www.tandfonline.com/loi/wjla the effects of labyrinth walking in an academic library donna m. zucker, jeungok choi, matthew n. cook & janet brennan croft to cite this article: donna m. zucker, jeungok choi, matthew n. cook & janet brennan croft ( ): the effects of labyrinth walking in an academic library, journal of library administration, doi: . / . . to link to this article: http://dx.doi.org/ . / . . published online: may . submit your article to this journal view related articles view crossmark data http://www.tandfonline.com/action/journalinformation?journalcode=wjla http://www.tandfonline.com/loi/wjla http://www.tandfonline.com/action/showcitformats?doi= . / . . http://dx.doi.org/ . / . . http://www.tandfonline.com/action/authorsubmission?journalcode=wjla &page=instructions http://www.tandfonline.com/action/authorsubmission?journalcode=wjla &page=instructions http://www.tandfonline.com/doi/mlt/ . / . . http://www.tandfonline.com/doi/mlt/ . / . . http://crossmark.crossref.org/dialog/?doi= . / . . &domain=pdf&date_stamp= - - http://crossmark.crossref.org/dialog/?doi= . / . . &domain=pdf&date_stamp= - - journal of library administration, : – , published with license by taylor & francis issn: - print / - online doi: . / . . the effects of labyrinth walking in an academic library donna m. zucker associate professor, college of nursing, university of massachusetts amherst, amherst, ma, usa jeungok choi associate professor university of massachusetts, college of nursing amherst, ma, usa matthew n. cook emerging technologies librarian, university of oklahoma libraries, norman, ok, usa janet brennan croft head of access and delivery services, rutgers university libraries, new brunswick, nj, usa abstract. the purpose of this study was to determine if labyrinth walking in an academic library would reduce library user stress and promote relaxation. a non- equivalent control group design was employed. systolic blood pressure was significant for time effect (effect size of . , and power . ). pulse rate was significant for time effect (effect size . , and power . ). satisfaction survey results demonstrated increased satisfaction after labyrinth walking. data from this pilot will form the basis of a larger scale study to determine the effect of labyrinth walking on stress particularly in high-stress learning environments. keywords academic libraries, stress, labyrinth walking, blood pressure, relaxation, learning environment universities and colleges are computer-centric working and learning environ- ments. evidence shows that roughly % to % of users experience some level of computer anxiety (buche, davis, & vician, ). one study found that among college freshmen that increased internet hours for online shop- ping, game playing (morgan & cotton, ) or research was associated © donna m. zucker address correspondence to donna m. zucker, associate professor, college of nursing, university of massachusetts amherst, no. pleasant street, amherst, ma , usa. e-mail: donna@acad.umass.edu d ow nl oa de d by [ . . . ] at : m ay d. m. zucker with increased depressive symptoms. additionally, poorly managed exam stress in college students can lead to symptoms of insomnia, suicide, and many other negative health outcomes (manning, manolya, & tarashankar, ). on a societal level, the negative effects of stress are pervasive and are implicated in virtually all of our major chronic conditions including heart disease, diabetes, and obesity, as well as mental health disorders such as substance abuse (wolever et al., ). thus the purpose of this project was to determine if labyrinth walking in an academic library had an impact on stress and self-reported satisfaction. literature review labyrinth walking despite psychotherapeutic and pharmacologic interventions for stress, the use of alternative and complementary forms of treatment have gained in usefulness for stress reduction, because they can be self-administered and are low-cost. one such strategy to reduce stress is labyrinth walking. it in- tegrates cognitive and structured, physical exercises in the form of walking meditation and has been known to assist in self-regulation, thus decreasing impulse control, problems interpreting social cues, and poor organization, thus enhancing quality of life (debellis, ; teicher, andersen, polcari, andersen, & navalta, ). labyrinth walking is a form of walking medita- tion. participants engage in this activity by walking a purposefully designed path at their own pace, either on the ground outdoors, or on a floor mat or projected image indoors ( - or -feet in diameter). the shape of the labyrinth is a variation on a series of circular turns that lead to the center. the entrance is the exit, and an entire walk from beginning to end takes about minutes. for over a decade, holistic nurses have described various dimensions of the usefulness of labyrinth walking. labyrinth walking has been explored as having relevance in reducing stress in clinical psychology (sholem, ). yang ( ) described the need for alternate forms of stress reduction, such as labyrinth walking, for nurses who work in obstetrical cancer nursing settings (zielinski, ). positive results have been seen in labyrinth walkers who claim it helps them relax, focus, and gain new insight into old problems (woodside, ). businesses are using labyrinth walking for brainstorming and creative problem solving. mindfulness labyrinth walking is a form of mindfulness-based stress reduction (mbsr). mbsr is a state of mind that entails a continuous, immediate awareness of physical sensations, perceptions, affective states, thoughts, and imagery. the benefits of this mental state are profound, particularly on stress. meditation d ow nl oa de d by [ . . . ] at : m ay the effects of labyrinth walking in an academic skills, as taught through the mbsr program, can be useful at every stage of ill health and have been shown to have an impact on both the physical and psychological components of chronic disease states and have been shown to increase a patient’s ability to self-regulate and influence their experience of symptoms (kabat-zinn, ). the mbsr program’s focus is to increase awareness of physical sensations and emotional and mental constructs, and to encourage a person’s larger vision of their resources and capacities, personal mean- ing, self-responsibility, and resilience—even in the face of illness. mbsr’s first-class curriculum includes the theme, “there is more right with you than wrong. . . no matter what your problems are” (kabat- zinn, , p. ). moreover, a comprehensive meta-analysis (grossman, neimann, schmidt, & walach, ) concluded that the effects of mbsr, which includes walking meditation, were “. . . found for health parameters of physical well-being, such as medical symptoms, sensory pain, physical impairment, and func- tional quality-of-life estimates . . .” (p. ). ultimately, it is no surprise that tech giants, such as google, have begun to embrace the myriad benefits associated with mindfulness training generally, and labyrinth meditation in particular (shachtman, ). workplace-associated stress at a large canadian university library, staff members have seen evidence of the rising levels of student stress in their dealings with the public while providing reference and research help (bell, ). attention has turned to include stress-reduction activities into libraries such as pet therapy (bell, ; mawhiney, ) and one study from australia described the cre- ation of an e-counselor or avatar to help students reduce their stress in the library at exam time (manning et al., ). the negative health im- plications of stress are clear, but there is little published data on the out- comes of delivering such innovative stress- reduction activities. what we know about success in stress reduction comes from studies that looked at reducing stress in work environments; libraries are work environments for students. stress has an economic impact on the workforce. the international labor organization has “estimated that % of all work-related disorders are due to stress, and that the loss caused by such stress-induced disor- ders amounted to eur . billion in the eu, eur . – . billion in the uk, and usd . billion in the u.s.a. in large-scale studies, employees with high stress have significantly higher annualized medical expenditures (odds ratio = . ) compared with those with lower stress, and their medical ex- penses are estimated at % to % above those for lower-stress employees (wolever et al., ). with an estimated $ . billion lost to stress-induced disorders each year, and a growing emphasis on workplace wellness (even d ow nl oa de d by [ . . . ] at : m ay d. m. zucker at the federal level, with the affordable care act), it is clear that labyrinth meditation could potentially benefit high-stress environments, like academic libraries. a study conducted by baicker, cutler, and song ( ) analyzed wellness programs designed to mitigate the risk of these same chronic con- ditions among employees and estimated “. . . average reductions of medical costs of about $ . for every dollar spent and of absenteeism costs of about $ . for every dollar spent” (p. ). impacts on health relieving stress has a positive impact on health. a review of the health-care literature has shown that labyrinth walking was found to have therapeutic value for nursing home clients (carnes, ), for clients in psychiatric facili- ties, and as therapeutic for some psychiatric illnesses (latorre, ; sandor, ), as well as for hospice families and clients (richardson, ). all of these studies used qualitative methods to describe the experience and mean- ing of labyrinth walking, through participant interviews and narratives. in a pilot study, zucker and sharma ( ) found that after completing a -week pilot labyrinth walking program, county offenders decreased their resting systolic and diastolic blood pressure and rated the program as highly satis- fying. most recently preliminary data from the university of oklahoma (uo) library revealed that % of respondents reported feeling more relaxed and less anxious after walking the labyrinth in the library that used a projected labyrinth image called sparq (cook & croft, ). statement of innovation this study was innovative as it was the first to measure blood pressure and pulse before and after labyrinth walking in a high-stress academic library setting. it was also innovative in that it used a touch-pad system that projects one of six labyrinth images on the floor. finally, the study was the first of its kind to measure blood pressure and pulse as well as relaxation in library labyrinth walkers and compare them to matched control subjects. methodology this study employed a non-equivalent control-group design to determine a change in subjects’ resting heart rate and blood pressure, and self reported relaxation measured after engaging in the labyrinth walking intervention. the setting used was the w.e.b. dubois library at the university of mas- d ow nl oa de d by [ . . . ] at : m ay the effects of labyrinth walking in an academic sachusetts amherst. the sample was a convenience sample of library users (undergraduate and graduate students, librarians, and faculty). study team members included nursing faculty and librarians. human subjects protections human subjects protections were insured by obtaining oral and written consent from all subjects. the principle investigator (pi) had overall re- sponsibility for the project and oversight of all procedures, data collection, and analysis. this study received institutional review board approval for the university of massachusetts amherst as well as approval from the dean of the library. data were stored in a locked cabinet at the pi office. any digital data was de- identified and the external drive was locked when not in use. procedure overview after granting written informed consent, subjects enrolled in the labyrinth walking study. subjects drew a card at random for group assignment (ex- periment or control). both groups had their resting heart rate and blood pressure taken before and after the intervention and control condition re- spectively, and completed a post-intervention relaxation survey. in the ex- perimental condition (group ), group members walked the labyrinth. the control group (group ) included reading information posters set up in the labyrinth walking area, each representing a different labyrinth pattern and providing the user with compelling information concerning the culture from which each design originates. the independent variable is labyrinth walking, and the dependent variables are blood pressure and pulse recordings and self-reported relaxation. sample and setting the sample was composed of undergraduate and graduate students, li- brarians and faculty ( in group and in group ). the setting was ded- icated space (quiet reading area) in the university of massachusetts w.e.b. dubois library. the study commenced immediately after spring break and continued until the installation was removed in august . intervention the labyrinth walk was conducted using a novel computer projection sys- tem called sparq. sparq is an interactive mindfulness tool designed to counteract stress and promote wellness in today’s computer-centric work d ow nl oa de d by [ . . . ] at : m ay d. m. zucker environment. with a touch-screen interface, the sparq user first selects from a variety of culturally significant and aesthetically compelling labyrinth designs and then engages the projected pattern to evoke a non-judgmental awareness of the present moment (i.e., mindfulness). the available patterns originate from native america, ancient india, and medieval europe and each is fully explicated by provided display material. engagement can take the form of yoga, dance, or a simple walk upon the pattern, which is projected on the floor of the meditation space from overhead. these same images were duplicated on informational posters surrounding the projection area for ease of reading. instruments the study used the health team ht r© digital wrist blood-pressure mon- itor (graham-field, ) to measure resting blood pressure. when used correctly, this product has a reported accuracy of +/− mm hg. for blood pressure and +/− beats/ minute for pulse. relaxation and satisfaction was measured by the bizzell labyrinth questionnaire (see appendix a). it con- sists of one labyrinth-walking survey question comparing nine feeling states, from before labyrinth walking to after. there are six positive feeling states (relaxed, peaceful, centered, open, quiet, and reflective), and three nega- tive feeling states (anxious, stressed, and agitated). the scale ranged from “much more” (feeling state) to “much less” (feeling state). there were two open-ended questions describing/commenting on the experience itself, and two yes/no questions about previous walkers’ experience and likelihood of engaging in this experience again. there is reported validity data on this tool (see appendix b). results demographic characteristics participants were mostly female ( . %, n = ), had a mean age of . years (sd = . ) with a range of to . the sample was composed of undergraduate ( . %) and graduate ( . %) students, and librarians and faculty ( . %). table describes sample characteristics. the intervention and control groups are equivalent in baseline demo- graphic characteristics. there were no significant differences between the experimental and control groups on demographics (independent t = . , p = . for age, χ = . , p = . for gender, χ = . , p = . for ed- ucation), indicating random assignment was successful in equating the two groups. d ow nl oa de d by [ . . . ] at : m ay the effects of labyrinth walking in an academic table demographic characteristics. intervention group (n = ) control group (n = ) total (n = ) mean sd mean sd mean sd . . . . . . age n % n % n % gender male . . female . . . missing . . education undergraduate . . . graduate . . . other . . . missing . . . note: sd is standard deviation. comparison of experimental and control groups systolic blood pressure. blood pressure (bp) and pulse rate readings were collected pre and post-intervention on all subjects. comparison of group differences on systolic, diastolic bp and pulse rate used rm-anovas. there was a significant mean difference in systolic blood pressure readings before and after the intervention [f( , ) = . , p = . ]. after the intervention, a mean of participants’ systolic blood pressure readings decreased from . (sd = . ) to . (sd = . ). however, there was no significant mean difference between the intervention and control groups (f( , ) = . , p = . ). tables and show a descriptive summary of systolic and diastolic bp readings and pulse rates (see table ) and a summary of rm-anova results (see table ). diastolic blood pressure. there was no significant mean difference in diastolic blood pressure readings before and after the intervention [f( , ) table descriptive summary of study variables. intervention group (n = ) control group (n = ) pre-intervention post-intervention pre-intervention post-intervention mean sd mean sd mean sd mean sd systolic blood pressure . . . . . . . . diastolic blood pressure . . . . . . . . pulse rate . . . . . . . . d ow nl oa de d by [ . . . ] at : m ay d. m. zucker table results of rm-anova. systolic blood pressure diastolic blood pressure pulse rate df∗ f∗∗ p∗∗∗ df f p df f p intervention effect (labyrinth vs. control) , . . , . . , . . time effect (pre- vs. post- interven- tion) , . . , . . , . . note. rm-anova is repeated measures analysis of variance; ∗df =degree of freedom; ∗∗f= f statistics value; ∗∗∗p = significance. = . , p = . ]. also, no differences emerged between the intervention and control groups [f( , ) = . , p = . ] (see tables and ). pulse rate. there was a significant mean difference in pulse rates before and after the intervention (f( , ) = . , p = . ). after the intervention, a mean of participants’ pulse rates decreased from . (sd = . ) to . (sd = . ). however, there was no significant mean difference between the intervention and control groups (f( , ) = . , p = . ) (see tables and ). relaxation and satisfaction. the survey was composed of two cate- gories of six positive and three negative feeling states, and items were summed in each category. subjects in the experimental group reported more positive responses to the labyrinth walking experience compared to the control-group subjects (see table ). for positive feeling states, significant differences between the intervention and control groups emerged in feel- ing relaxed (p < . ), peaceful (p < . ), and reflective (p = . ). for negative feeling states, anxious (p = . ), stressed (p = . ) and agitated (p = . ) showed a significant difference between the intervention and control groups. table shows a descriptive summary and the results of mann-whitney u tests. three open-ended questions sought to discover general feelings evoked by the labyrinth walking/viewing experience, reasons for selecting labyrinth patterns, and the value of having a labyrinth in the library. these themes were content-analyzed using criteria from lincoln and guba ( ) and using a checklist developed to ensure attention to trustworthiness (elo et al., ). hand coding using colors aided in this analysis. subjects positively described the experience, using adjectives such as “relaxing,” “refreshed,” “rejuvenated” and “intrigued.” reasons for selecting patterns were reported as “familiar,” “easy” and “practical.” respondents stated that the value of having a library d ow nl oa de d by [ . . . ] at : m ay the effects of labyrinth walking in an academic table descriptive summary and results of mann-whitney u tests of relaxation and satisfaction. intervention group (n = ) control group (n = ) exact mann-whitney significance mean sd mean sd u ( -tailed) positive feeling state relaxed . . . . . . peaceful . . . . . . centered . . . . . . open . . . . . . quiet . . . . . . reflective . . . . . . negative feeling state anxious . . . . . . stressed . . . . . . agitated . . . . . . table selected qualitative directly quoted comments. general feelings reasons for selecting patterns value of the labyrinth the labyrinth was very relaxing chose more open patterns gives people the opportunity to center themselves [i] want to learn more i did not want to have to think it allows for a relaxing place in a sometimes stressful area i felt refreshed i liked the tree nice break from work-hectic pace i felt rejuvenated it was a familiar pattern it can help with stress and anxiety intrigued they looked easy it’s a good service for the library to offer the public curious the intention resonated with me reminds people that the library . . . can be a restful and healing place. labyrinth was “positive in helping people center,” “provides a break from the hectic work pace,” and “a relaxing place.” selected quotes can be seen in table . conclusion and discussion the purpose of this study was to determine if labyrinth walking in an aca- demic library had an impact on stress and self-reported satisfaction. the sample was heterogeneous in terms of campus status (student, faculty, li- d ow nl oa de d by [ . . . ] at : m ay d. m. zucker brarian, public), age, and education. results showed lower systolic blood pressures and pulse rates in labyrinth walkers compared to control subjects. in addition the labyrinth walkers reported higher satisfaction and relaxation than control subjects, by self-report questionnaire. limitations the sample size was small (n = ). while the labyrinth was available be- tween mid- term (march) and late summer, ideally the labyrinth study should be conducted during the fall semester forward, exposing more participants for a longer period of time. the sample also was predominantly female, thus not representative of the campus community. the relaxation and satisfaction questionnaire was used at the request of the sparq creator in an effort to aggregate previous data using the same survey. in our study we found the instrument difficult to use given the range of feeling states with this size sample. also we used the mann-whitney u test because survey responses did not provide a normal distribution, thus our probability had low power. an environmental limitation was that the projector couldn’t be mounted very high due to the low ceiling. recommendations this study has added to the knowledge base on interventions to reduce stress in libraries. data also suggest a physiologic response to labyrinth walking, and walkers reported satisfaction and relaxation. labyrinth walking has had a long anecdotal history of satisfaction and self-reported stress reduction, yet there need to be more studies demonstrating a biological basis for the benefits of this intervention. in an increasing technological environment, every effort to reduce workplace and study stress at the university must be looked at as an opportunity to promote health and well-being. further study the study results indicate a larger scale study should be undertaken to confirm study findings. in addition, it is recommended to use the new version of sparq that has greater mobility and a wider projection area. installing a labyrinth in the library could be integrated into a larger campus-side effort to enhance workplace wellness. references baicker, k., cutler, d., & song, z. ( ). workplace wellness programs can generate savings. health affairs, ( ), – . d ow nl oa de d by [ . . . ] at : m ay the effects of labyrinth walking in an academic bell, a. ( ). paws for a study break: running an animal assisted therapy program at the gerstein science information centre. the canadian journal of library information practice and research, ( ), – . buche, m. w., davis, l. r., & vician, c. ( ). a longitudinal investigation of the effects of computer anxiety on performing in a computer-intensive environment, journal of information systems education, ( ), – . carnes, v. b. ( ). walking the labyrinth to peace. not-for-profit report. nursing homes long term care management, ( ), – . cook, m., & croft, j. b. ( ). interactive mindfulness technology. a walking labyrinth in an academic library. college & research libraries news, ( ), – . debellis, m. d. ( ). developmental traumatology: the psychobiological devel- opment of maltreated children and its implications for research, treatment, and policy. development and psychopathology, ( ), – . elo, s., kaariainen, m., outi, k., polkki, t., utriainen, k., & kymgas, h. ( ). qualitative content analysis: a focus on trustworthiness. sage open, – . doi: . / graham-field. retrieved november , , from http://www.grahamfield. com/content/search.aspx?searchtext = wrist+blood+pressure grossman, p., neimann, l., schmidt, s., & walach, h. ( ). mindfulness-based stress reduction and health benefits: a meta- analysis. journal of psychosomatic research, ( ), – . kabat-zinn, j. ( ). meditation for stress reduction, inner peace and whatever. psychology today, july/august, pp. – ; – . latorre, m. a. ( ), integrated perspectives: walking: an important therapeutic tool. perspectives in psychiatric care, ( ), – . lincoln, s. y., & guba, e. g. ( ). naturalistic inquiry. sage, thousand oaks, ca. manning, l., manolya, k., & tarashankar, r. ( ). e-counsellor: an avatar for stu- dent exam stress management. in proceedings of the international conference on information management & evaluation (pp. – ). atilim university, ankara, turkey: reading, uk: thompson. mawhiney, s. ( ). dogs provide stress (and comic) relief. aall spectrum, ( ), – . morgan, c., & cotton, s. r. ( ). the relationship between internet activities and depressive symptoms in a sample of college freshmen. cyberpsychology & behavior, ( ), – . richardson, r. ( ). grief walking in the labyrinth. journal of palliative care, ( ), . sandor, m. k. ( ). the labyrinth: a walking meditation for healing and self-care. explore, ( ), – . shachtman, n. ( ). meditation and mindfulness are the new rage in sil- icon valley. retrieved august , from http://wired.co.uk/magazine/ archive/ / /features/success-through-enlightenment sholem, j. ( ). listening to the labyrinth: an organic and intuitive inquiry. dis- sertation abstracts international. section b. sciences and engineering, ( ), – . d ow nl oa de d by [ . . . ] at : m ay d. m. zucker teicher, m., andersen, s., polcari, a., andersen, c., & navalta, c. ( ). devel- opmental neurobiology of childhood stress and trauma. psychiatric clinics of north america, ( ), – . wolever, r. q., bobinet, k. l., mccabe, k., mackenzie, e. r., fekete, e., kusnick, c. a., & baime, m. ( ). effective and viable mind-body stress reduction in the workplace: a randomized controlled trial. journal of occupational health psychology, ( ), – . woodside, d. ( ). unwinding the labyrinth mystery. new age journal. retrieved august , from www.newagejournal.com/labyrinth.shtml yang, a. c. ( ). walking the labyrinth: a tool of stress reduction for nurses. journal of gynecologic oncology nursing, ( ), – . zielinski, k. ( ). the healing power of the labyrinth: when walking around in a circle is good for your health. holistic nursing practice, ( ), – . zucker, d. m., & sharma, a. ( ). labyrinth walking in corrections. journal of addictions nursing, ( ), – . appendix a bizzell labyrinth questionnaire - group please complete all of the questions. thank you. . comparing how i felt before i walked the labyrinth with how i feel now, i feel: much more more about the same less much less not applicable relaxed peaceful centered open quiet reflective anxious stressed agitated any other comments you would like to make about your feelings? . is this your first time walking a meditation labyrinth? if yes, how many times_______________________ d ow nl oa de d by [ . . . ] at : m ay the effects of labyrinth walking in an academic yes no why did you choose this particular pattern? (describe) . did you read the posters? yes no if yes, did reading the posters about the different labyrinth designs influence your decision of which one to walk? yes no . do you think a waking labyrinth enhances the overall library experience? yes no if yes, how? general information age: _____________years old gender: male female other student status: d ow nl oa de d by [ . . . ] at : m ay d. m. zucker undergraduate undergraduate graduate other appendix a bizzell labyrinth questionnaire - group please complete all of the questions. thank you. . comparing how i felt before i viewed the posters with how i feel now, i feel: much more more about the same less much less not applicable relaxed peaceful centered open quiet reflective anxious stressed agitated any other comments you would like to make about your feelings? . had you ever heard of meditation labyrinths before to- day? yes no if yes, describe. d ow nl oa de d by [ . . . ] at : m ay the effects of labyrinth walking in an academic general information age: ________________________years old student status undergraduate graduate other male female other appendix b validity of the labyrinth walk questionnaire existence of validity for an instrument such as the labyrinth walk question- naire is never proven conclusively. rather, evidence is gathered that reflects validity of the instrument for particular populations. that being said, evidence does point to both content and construct validity for the labyrinth walk questionnaire. content validity evidence for content validity came from the process by which the question- naire was developed as well as from initial review of the instrument and feedback regarding the questionnaire items from individuals knowledgeable about labyrinths. the word list from which the items were developed was compiled by reviewing the overall patterns of responses of individuals to the labyrinth as anecdotally reported in the primary literature at the time the questionnaire was developed: walking a sacred path: rediscovering the d ow nl oa de d by [ . . . ] at : m ay d. m. zucker labyrinth as a spiritual tool, by the rev. dr. lauren artress and the way of the labyrinth by helen curry. at that time dr. artress was a canon at grace cathedral, san francisco, ca. she is the person frequently credited with facilitating the resurgence of interest in labyrinths around the world in the late s. helen curry is a founding member and the first president of the labyrinth society, inc. the questionnaire’s initial word list contained approximately words. after pilot testing the questionnaire at a labyrinth walk and discussing the word list with the participants in the pilot test, words that appeared to be ambiguous or whose meanings were close to those of other words on the list were eliminated. from this exercise the list was reduced to words and the questionnaire was revised. next the questionnaire was field tested at the labyrinth society’s annual gathering in lenox, ma, in november . based on the comments of those who walked the labyrinths at the gathering and completed the questionnaire, as well as a discussion of the instrument at a meeting of the labyrinth society research committee and others interested in labyrinth research, no changes were recommended to the list. among those participating were some of the most noted authorities in the labyrinth field. the comments of the walkers and the consensus of the group discussion indicated that the list was satisfactory for such a "general use" instrument. construct validity construct validity has been substantiated through statistical analysis. inter- correlations (spearman’s rho) ranged from −. (correlation of "stressed" to "relaxed") to . (correlation of "agitated" to "anxious"). generally there are moderately high correlations among the questionnaire’s scales. prelimi- nary evidence of construct validity was found by factor analysis; however, this was not completely conclusive because of the sample makeup and size. additional strength for construct validity resulted from analyses that com- pared factors from group to group (e.g., labyrinth type) as well as analyses of variance. concurrent validity concurrent validity is not really a concern for this type of instrument. it would be more important for a norm-referenced test like the itbs or a personality test like mmpi. results vary from labyrinth event to labyrinth event and from person to person. this is to be expected because of the nature of the labyrinth. different people experience the labyrinth in different ways. the same person experiences the labyrinth differently on successive d ow nl oa de d by [ . . . ] at : m ay the effects of labyrinth walking in an academic labyrinth walks. however, the overall results and data trends obtained from the labyrinth walk questionnaire have been remarkably stable over time. additional evidence of validity a simple but important self-validating mechanism included within the ques- tionnaire is question , in which respondents are asked to provide and rate other words that describe their labyrinth walk experience that are not among the included in question . so far, with responses over labyrinth events, only four respondent-supplied effects (question ) have been provided by or more respondents. john w. rhodes, ph.d. chair, research committee the labyrinth society d ow nl oa de d by [ . . . ] at : m ay 	university of massachusetts amherst 	from the selectedworks of donna m. zucker 	spring may , 	the effects of labyrinth walking in an academic library.pdf 	wjla_a_ _o 	 skip to content 	 skip to navigation get help now donate log in donate search menu 	 about us about us 	 	 who we are 	 our vision and 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fundraise for us work for us see our campaigns if you are looking for a report or document, please email campaigns@rethink.org we care about your privacy this website uses cookies to give you the best experience. read our updated privacy policy and cookies policy accept all cookies accept all mandatory cookies share this page sign up for our newsletter sign up 	work for us 	contact us the first uk-wide mental health and money advice service dedicated to supporting people affected by mental health and money issues. follow us: 	 	 	 	 	 	 	 	 	work for us 	contact us 	make a complaint 	our supporter promise 	privacy policy 	cookies rethink mental illness registered office albert embankment london se tp united kingdom | info@rethink.org registered in england number . registered charity number . effectiveness of animal-assisted therapy: a systematic review of randomized controlled trials article in press+modelyctim- ; no. of pages complementary therapies in medicine ( ) xxx, xxx—xxx available online at www.sciencedirect.com sciencedirect j o u r n a l h o m e p a g e : w w w . e l s e v i e r h e a l t h . c o m / j o u r n a l s / c t i m effectiveness of animal-assisted therapy: a systematic review of randomized controlled trials� hiroharu kamioka a,∗, shinpei okada b, kiichiro tsutani c, hyuntae park d, hiroyasu okuizumi e, shuichi handa e, takuya oshio f, sang-jun park b, jun kitayuguchi g, takafumi abe g, takuya honda h, yoshiteru mutoh i a faculty of regional environment science, tokyo university of agriculture, japan b physical education and medicine research foundation, japan c department of drug policy and management, graduate school of pharmaceutical sciences, the university of tokyo, japan d department of functioning activation, national center for geriatrics and gerontology, japan e mimaki onsen (spa) clinic, tomi city, japan f social welfare service corporation care-port mimaki, japan g physical education and medicine research center unnan, japan h japanese society for the promotion of science, japan i the research institute of nippon sport science university, japan keywords animal-assisted therapy; systematic review; randomized controlled trials summary the objectives of this review were to summarize the evidence from randomized controlled trials (rcts) on the effects of animal-assisted therapy (aat). studies were eligible if they were rcts. studies included one treatment group in which aat was applied. we searched the following databases from up to october , : medline via pubmed, cinahl, web of science, ichushi web, ghl, wprim, and psycinfo. we also searched all cochrane database up to october , . eleven rcts were identified, and seven studies were about ‘‘mental and please cite this article in press as: kamioka h, et al. effectiveness of animal-assisted therapy: a systematic review of randomized controlled trials. complement ther med ( ), http://dx.doi.org/ . /j.ctim. . . behavioral disorders’’. types of animal intervention were dog, cat, dolphin, bird, cow, rabbit, ferret, and guinea pig. the rcts conducted have been of relatively low quality. we could not perform meta-analysis because of heterogeneity. in a study environment limited to the people who like animals, aat may be an effective treat- ment for mental and behavioral disorders such as depression, schizophrenia, and alcohol/drug addictions, and is based on a holistic approach through interaction with animals in nature. � this is an open-access article distributed under the terms of the creative commons attribution-noncommercial-no derivative works license, which permits non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited. ∗ corresponding author at: faculty of regional environment science, tokyo university of agriculture, - - sakuragaoka, setagaya-ku, tokyo - , japan. tel.: + ; fax: + . e-mail address: h kamiok@nodai.ac.jp (h. kamioka). - /$ — see front matter © the authors. published by elsevier ltd. all rights reserved. http://dx.doi.org/ . /j.ctim. . . dx.doi.org/ . /j.ctim. . . dx.doi.org/ . /j.ctim. . . http://www.sciencedirect.com/science/journal/ www.elsevierhealth.com/journals/ctim mailto:h kamiok@nodai.ac.jp dx.doi.org/ . /j.ctim. . . article in+modelyctim- ; no. of pages to most effectively assess the pot to utilize and describe ( ) rct me ( ) intervention dose, ( ) adverse © the authors. published by c i a a t h h ontents introduction ............................................................................................................... methods ................................................................................................................... criteria for considering studies included in this review ............................................................... types of studies................................................................................................ types of participants........................................................................................... types of intervention and language ............................................................................ types of outcome measures .................................................................................... search methods for identification of studies .......................................................................... bibliographic database......................................................................................... search strategies .............................................................................................. registry checking .............................................................................................. handsearching, reference checking, and other................................................................. review methods ...................................................................................................... selection of trials .............................................................................................. risk of bias (quality) assessment ............................................................................... summary of studies and data extraction ....................................................................... benefit, harm, and cost ........................................................................................ analysis ........................................................................................................ research protocol registration ................................................................................. results .................................................................................................................... study selection ....................................................................................................... study characteristics ................................................................................................. quality assessment ................................................................................................... meta-analysis ......................................................................................................... adverse events ....................................................................................................... costs of intervention ................................................................................................. discussion ................................................................................................................. tendency of target disease and outcome ............................................................................. validity of overall evidence based on quality assessment ............................................................. overall evidence and quality assessment....................................................................... overall evidence............................................................................................... future research agenda to build evidence ..................................................................... strength and limitations ....................................................................................... conclusion ................................................................................................................ contributors............................................................................................................... funding ................................................................................................................... conflict of interest statement ............................................................................................. ethical approval ........................................................................................................... data sharing............................................................................................................... acknowledgements ........................................................................................................ appendix. references to studies excluded in this review ................................................................ references ................................................................................................................ ntroduction nimals have been our companions since ancient times, animals as tools for improving physical, mental and social functions, and educational and welfare aspects of humans are called animal-assisted interventions (aai). please cite this article in press as: kamioka h, et al. effectiv randomized controlled trials. complement ther med ( ), h nd we are well aware of the many ways that some of hem have aided us throughout history. animals are used to elp humans in ways; for example, serving as working shire orses and guide dogs for the blind. the modalities that use s t a press h. kamioka et al. ential benefits for aat, it will be important for further research thodology when appropriate, ( ) reasons for non-participation, effects and withdrawals, and ( ) cost. elsevier ltd. all rights reserved. to understand the different types of aai and integrate eness of animal-assisted therapy: a systematic review of ttp://dx.doi.org/ . /j.ctim. . . ome useful definitions, we accepted the classification of he american veterinary medical association (avma). the vma classifies aai into three category: (i) animal-assisted dx.doi.org/ . /j.ctim. . . in+model n c b o s i o s t t w ( u l r i r w f s i n c u t c p a d h w j s r s i a t t u ( ( w p a p r i a articleyctim- ; no. of pages effectiveness of animal-assisted therapy activities (aaa) that utilize companion animals, (ii) animal assisted-therapy (aat) that utilizes therapy animals, and (iii) service animal programs (sap) that utilize service animal. especially, aat is a goal-directed intervention in which an animal that meets specific criteria is an integral part of the treatment process. these programs are usually directed and delivered by human health or human services professionals with specialized expertise and within the scope of practice of their profession. a pioneer systematic review (sr) of aat showed that overall it was associated with moderate effects in improv- ing outcomes in four areas: autism-spectrum symptoms, medical difficulties, behavioral problems, and emotional well-being. however, contrary to expectations, character- istics of the sr participants and studies did not produce differential outcomes. some limitations of the sr were that it only included articles published prior to , and it did not include randomized controlled trials (rcts). it is well known in research design that evidence grading is highest for a sr with meta-analysis of rcts. although many studies have reported the effects of aat, , , there is no sr of the evidence based on rcts. therefore, the objective of this review was to summarize the evidence from rcts on the effects of aat. methods criteria for considering studies included in this review types of studies studies were eligible if they were rcts. types of participants there was no restriction on participants. types of intervention and language studies included at least one treatment group in which aat was applied. the definition of aat in this study was based on the classification of the avma. type of animal was not a restriction but we excluded robotic animals (e.g., robotic dog). there was no restriction on the basis of language. types of outcome measures we focused on all cure and rehabilitation effects using the international classification of diseases- (icd- ). search methods for identification of studies bibliographic database we searched the following databases from up to october , : medline via pubmed, cinahl, web of sci- ence, ichushi web (in japanese), the global health library (ghl), the western pacific region index medicus (wprim), and psycinfo. we also searched the cochrane database of systematic reviews (cochrane reviews), the database of please cite this article in press as: kamioka h, et al. effectiv randomized controlled trials. complement ther med ( ), h abstracts of reviews of effects (dare), the cochrane cen- tral register of controlled trials (central), the cochrane methodology register (methods studies), the health tech- nology assessment database (technology assessments), the a i m c press hs economic evaluation database (nhs eed), the cochrane ollaboration databases (cochrane groups), and the camp- ell systematic reviews (the campbell collaboration) up to ctober , . all searches were performed by a specific earcher (hospital librarian) who was qualified in medical nformation handling, and who was sophisticated in searches f clinical trials. earch strategies he special search strategies contained the elements and erms for medline, cinahl, web of science, ichushi eb, ghl, wprim, psycinfo, and all cochrane databases table ). only keywords relating to the intervention were sed for the searches. titles and abstracts of identified pub- ished articles were reviewed in order to determine the elevance of the articles. references in relevant studies and dentified rcts were screened. egistry checking e searched the international clinical trials registry plat- orm (ictrp), the international prospective register of ystematic review (prospero), the clinical trials.gov reg- stry, and the university hospital medical information etwork-clinical trials registry (umin-ctr) up to october , . ictrp in the who registry network meets spe- ific criteria for content, quality and validity, accessibility, nique identification, technical capacity and administra- ion. primary registries meet the requirements of the icmje. linical trials.gov is a registry of federally and privately sup- orted clinical trials conducted in the united states (us) nd around the world. umin-ctr registers clinical trials con- ucted in japan and around the world. andsearching, reference checking, and other e handsearched abstracts published in aat and relevant ournals in japan. we checked the references of included tudies for further relevant literature. eview methods election of trials n order to make the final selection of studies for the review, ll criteria were applied independently by four authors (e.g., h, jk, sp, and so) to the full text of articles that had passed he first eligibility screening (fig. ). disagreements and ncertainties were resolved by discussion with other author e.g., hk, kt, and ym). studies were selected when (i) the design was a rct and ii) one of the interventions was a form of aat. protocols ithout results were excluded, and we included only com- leted studies. cure and rehabilitation effects were used as primary outcome measure. trials that were excluded were resented with reasons for exclusion (appendix). isk of bias (quality) assessment n order to ensure that variation was not caused by system- tic errors in the study design or execution, three review eness of animal-assisted therapy: a systematic review of ttp://dx.doi.org/ . /j.ctim. . . uthors (ho, sp, and th) independently assessed the qual- ty of articles. a full quality appraisal of these papers was ade using the cochrane’s criteria list for the methodologi- al quality assessment. disagreements and uncertainties dx.doi.org/ . /j.ctim. . . article in press+modelyctim- ; no. of pages h. kamioka et al. table the special search strategies. w s o s w d c b b g v c m s t h r b t b i j e i p t a p a c ( a ere resolved by discussion with other authors (e.g., ho, o, and hk). each item was scored as ‘yes’ (y), ‘no’ (n), ‘do not know r unclear’ (?), or ‘not applicable’ (n/a). depending on the tudy design, some items were not applicable. the ‘‘n/a’’ as excluded from calculation for quality assessment. we isplayed the percentage of present description on all - heck items for the quality assessment of articles. then, ased on the percentage of risk of poor methodology and/or ias, each item was assigned to the following categories: ood description ( — %), poor description ( — %), or ery poor description ( — %). inter-rater reliability was alculated on a dichotomous scale using percentage agree- ent and cohen’s kappa coefficient (k). please cite this article in press as: kamioka h, et al. effectiv randomized controlled trials. complement ther med ( ), h ummary of studies and data extraction en review authors (hp, ho, sh, to, sp, ta, th, jk, so and k) described the summary from each article based on the ecommended structured abstracts. , e a i i medline (n= ) cinahl (n= ) web of science (n= ) ichushi-web (n= ) global healt h librar y (n= ) western pacifi c regio n index medic us (n= ) psycinfo (n= ) cochrane datab ase of syste matic revi ews (n= ) data base of abstract s of re views of effect s (n = ) cochrane central regist er of controlle d tria ls (n= ) coch rane metho dology re gister (n = ) health technology assessments database (n= ) nhs econo mic eval uati on databas e (n= ) cochrane coll aborati on data bases (n= ) campbel l syste matic revi ews (n= ) manuscripts based on databases intern unive retrieved fo r detail evalua articles meeting inclusion criteria ( excluded (n= ) figure flowchart enefit, harm, and cost he grade working group reported that the balance etween benefit and harm, quality of evidence, applicabil- ty, and certainty of the baseline risk were all considered in udgments about the strength of recommendations. adverse vents (harm) and cost for intervention were especially mportant information for researchers and users of clinical ractice guidelines, and we presented this information with he description of each article. nalysis re-planned stratified analyses were: (a) trials comparing at with no treatment or waiting list controls, (b) trials omparing different types of general rehabilitation methods e.g., physical therapy, occupational therapy), and (c) tri- ls comparing aat with other different intervention(s). we eness of animal-assisted therapy: a systematic review of ttp://dx.doi.org/ . /j.ctim. . . xpressed the results of each rct, when possible, as rel- tive risk (rr) with corresponding percent confidence ntervals ( %ci) for dichotomous data, and as standard- zed or weighted mean differences (smd) with %ci for clinical registries international clinical trial s registry platfor m (n= ) ational prospectiv e regist er of syste matic revi ews (n= ) cli nical tria ls.go v (n= ) rsity hospita l medical infor mation networ k -clinical trials registr y (n= ) tion by articles (n= ) n= ) appendix (references to studies excluded) not rando mized con troll ed trial (n= ) not curative effect (n= ) not or iginal article (n= ) not detected (n= ) submit preparation a t presen t (n= ) not ani mal therapy (n= ) reduplication (n= ) not acceptable (n= ) not publishe d yet (n= ) of trial process. dx.doi.org/ . /j.ctim. . . in+model s c s s s t b f p t a t w f f v s t n s h f h m a w g p i e c t i d g f p a a s c r i a a p a t o e s o w articleyctim- ; no. of pages effectiveness of animal-assisted therapy continuous data. heterogeneous results of studies that pro- vided by inclusion criteria were not combined. research protocol registration we submitted and registered our research protocol to the prospero database (no. crd ), an interna- tional database of prospectively registered srs in health and social care. key features from the review protocol are recorded and maintained as a permanent record in prospero. this provides a comprehensive listing of srs reg- istered at inception, and enables comparison of reported review findings with what was planned in the protocol. pros- pero is managed by crd and funded by the uk national institute for health research (nihr). registration was rec- ommended because it encourages full publication of the review’s findings and transparency in changes to methods that could bias findings. results study selection the literature searches based on databases included poten- tially relevant articles (fig. ). abstracts from those articles were assessed, and papers were retrieved for further evaluation (checks for relevant literature). forty-six pub- lications were excluded because they did not meet the eligibility criteria (see appendix). eleven studies — met all inclusion criteria (table ). study characteristics the language of all eligible publications was english. target diseases and/or symptoms (table ) were schizophrenia, , , cancer, advanced heart failure, depression, , ambulatory motor impairment, older adults admitted to skilled rehabilitation units, elderly persons with chronic psychiatric, medical, and neurologic conditions, and a mental illness diagnosis as well as a history of alcohol/drug abuse or other addictive behaviors. based on icd- , we identified a disease targeted in each article (table ). among studies, seven studies were about ‘‘mental and behavioral disorders (f - , f , , , f - , , and the unidentified due to includ- ing many geriatric disease )’’. there was one study each in ‘‘neoplasms (c -d ; the unidentified due to many site of cancer)’’, ‘‘diseases of the circulatory system (i . )’’, and ‘‘injury, positioning and certain other consequences of external causes (t - )’’. because there were a variety of target diseases, there was one article that we could not identify a single disease. types of animal studied included dog, — , , , dog or cat, dolphin, bird, cow, and dog, rabbit, ferret, and guinea pig. in a study for inpatients with schizophrenia, com- pared with the control group, the dog treatment group showed significant improvement on all measures expect please cite this article in press as: kamioka h, et al. effectiv randomized controlled trials. complement ther med ( ), h for social support and negative psychiatric symptoms. the results of the study showed that aat can promote significant improvements in many clinical aspects among inpatients with schizophrenia. similarly, in a study for inpatients with t c f press chizophrenia, the dog intervention group showed signifi- ant improvements in the living skill profile, social contact core, and in the positive and negative symptom dimen- ions. on the other hand, the control group also showed ignificant positive changes in positive and general symp- oms. no differences were found between the two groups efore and after the application of the intervention. as or elderly schizophrenic patients, a controlled -year study rovided subjects with their own dog or cat as the interven- ion animal, according to personal preference. the social daptive functioning evaluation (safe) scores at termina- ion of the study showed significant improvement compared ith baseline scores, and were significantly more positive or the aat group on both total safe score and on the social unctions subscale. a study tried to identify to what extent an aat (i.e., isits with a dog) affects mood, self-perceived health, and ense of coherence among patients undergoing radiation herapy for cancer. results showed no statistically sig- ificant differences within or between groups in mood, ense of coherence, or two facets of self-perceived ealth. an aat was performed in patients hospitalized with heart ailure. the study tried to determine whether a -min ospital visit with a therapy dog improves hemodynamic easures, lowers neurohormone levels, and decreases state nxiety in patients with advanced heart failure. compared ith controls, the volunteer-dog group had significantly reater decreases in systolic pulmonary artery pressure and ulmonary capillary wedge pressure during and after the ntervention. a study based on dolphins was performed to evaluate the ffectiveness of animal facilitated therapy with dolphins, ontrolling for the influence of the natural setting, in the reatment of mild to moderate depression. for the partic- pants who completed the study, the mean severity of the epressive symptoms was more reduced in the treatment roup than in the control group. a study reported the effectiveness of dog intervention or people with severe ambulatory disability. significant ositive changes in all but two dependent measures were ssociated with the presence of a service dog both between nd within groups. psychologically, all participants showed ubstantial improvements in self-esteem, internal locus of ontrol, and psychological well-being within six months after eceiving their dog. socially, all participants showed similar mprovements in community integration. demographically, ll participants showed increases in school attendance nd/or part-time employment. economically, all partici- ants showed dramatic decreases in the number of both paid nd unpaid assistance hours. an avian interventional study was performed to examine he alleviation effect on depression, loneliness, and morale f older adults in skilled rehabilitation units. in the pres- nce of a companion bird, the experimental group showed a ignificant decrease in depression, but no decrease in morale r loneliness was observed in the control group that was ithout a bird. a dog interventional study was performed to evaluate eness of animal-assisted therapy: a systematic review of ttp://dx.doi.org/ . /j.ctim. . . he effects on geriatric psychiatry inpatients. no signifi- ant differences in the multidimensional observation scale or elderly subjects scores were found between or within dx.doi.org/ . /j.ctim. . . p le ase cite th is article in p re ss as: k am ioka h , e t al. effe ctive n e ss of an im al-assiste d th e rap y: a syste m atic re vie w of ran d om ize d con trolle d trials. c om p lem en t t h er m ed ( ), h ttp ://d x.d oi.org/ . /j.ctim . . . a r t ic l e in p r e s s +m odel y c t im - ; n o. of page s h . k am ioka e t al. table brief summary of articles based on structured abstracts and additional elements. reference no. author chu ci, et al. johnson ra. et al. cole km. et al. citation j psychosocial nurs ; : — oncology nursing forum ; : — . am j crit care ; : — title the effect of animal-assisted activity on inpatients with schizophrenia animal-assisted activity among patients with cancer: effects on mood, fatigue, self-perceived health, and sense of coherence animal-assisted therapy in patients hospitalized with heart failure aim/objective to evaluate the effects of animal-assisted activity on self-esteem, control over activities of daily living, and other psycho-physiological aspects among taiwanese inpatients with schizophrenia to identify to what extent an animal-assisted activity (i.e., visits with a dog) affects the mood, self-perceived health, and sense of coherence among patients undergoing radiation therapy. to determine whether a -min hospital visit with a therapy dog improves hemodynamic measures, lowers neurohormone levels, and decreases state anxiety in patients with advanced heart failure setting/place psychiatric institution in hualien country, located in eastern taiwan outpatient radiation therapy units of two hospitals in a mid-sized, midwestern city, usa the cardiac care unit or the cardiac observation unit participants adult patients with schizophrenia adult patients undergoing nonpalliative radiation therapy adult patients with a diagnosis of advanced heart failure intervention weekly -min animal-assisted activity sessions were arranged for the patients of the treatment group over a period of months. patients in the control group received treatment as usual. the animal-assisted activity was held in the hospital’s garden but took place in the activity hall during inclement weather and during the first weeks of the study so as not to distract the patients. the animals used in this study were two healthy, friendly, medium-sized, trained dogs of nonspecific breeds. they were provided by trainers, but during interactions with patients were accompanied only by the investigators patients participated in -min sessions three times per week for four weeks. dog visit group: two visitor dogs used in the study were certified by the college of veterinary medicine at the university of missouri pet-assisted love and support (pals) program. dogs were selected for quiet temperaments, friendliness with strangers, and length of visitation experience. during the sessions, participants combed, petted, played, and talked with the dog. the dog handlers introduced the dog to the participant during first session and were instructed to avoid conversation with the participants. friendly human visit group: participants met individually with the same adult. friendly human visitors were volunteer nursing students, emeritus nursing faculty, hospital administrative staff from other departments, and community members. reading group: participants read silently researcher-provided magazines. magazines were selected based on lack of content related to health and fitness, cancer and treatments, selfhelp, counseling, pets, aaa, and animal-assisted therapy patients randomly assigned to the experimental group received a visit from a volunteer and a dog. the type of dog breed was not controlled for; dogs of various breeds were used. the dogs included extra-large dog, large dogs, medium dogs, and small dogs. each visit was conducted according to the guidelines taught during the volunteer and dog orientation: ( ) volunteer introduces self and dog, ( ) patient washes his or her hands before the visit, ( ) dog lies on the bed with its head within . m ( ft) of the patient’s head on a clean sheet used as a barrier to the patient’s bed, ( ) patients may pet the dog and talk to the dog and volunteer and ( ) patient washes his or her hands after the visit. no attempt was made to control the content of the conversation during the visit. the visit lasted for min. after the visit, an instant self-developing photograph was taken of the patient with the dog and given to the patient. patients randomly assigned to the volunteer-only group received a -min visit from a volunteer. the volunteer introduced himself or herself, sat in a chair approximately . m ( ft) from the patient’s head, and let the patient know that the visit would last for min if the patient was up to it. no attempt was made to control for the volunteer’s usual conversation during the visit. no patient requested to end any earlier than min. patients randomly assigned to the control group were asked to lie quietly without talking unless they had a specific need or request. for all groups, a sign was placed on the patient’s door or curtain asking everyone to please not interrupt the visit. nurses assigned to patients to provide care were asked not to interrupt during the -min interaction and data collection, unless an emergency occurred. volunteers participating in the volunteer-dog teams were used for the volunteer-only group as much as possible to minimize any influence of a volunteer’s personality on the results. for all groups, data were collected at baseline immediately before the visit, min after the intervention started, and at min, which was min after the end of the visit main and secondary outcomes self-esteem, self-determination, extent of social support and increases and decreases in adverse psychiatric symptoms mood:profile of mood states (poms), self-perceived health:self-perceived health questionnaire, sense of coherence:orientation to life questionnaire(otlq), exit questionnaire: participants completed this five-item tool that was developed by the research team heart rate, cardiac index, plasma levels of catecholamines, and anxiety randomization no description via a computer-generated random-numbering system using a table of random numbers blinding/masking no description no description data collectors did not speak to the patients during the measurement of outcome variables and the intervention numbers randomized treatment group (n = ) and control group (n = ) the dog visit group (treatment group) (n = ), friendly human visit group (n = ), or quiet reading group (n = ) volunteer-dog team group (n = ), volunteer only group (n = ), and control group (n = ) recruitment the participants in this study were patients selected from a -bed psychiatric institution in hualien county, located in eastern taiwan caucasian and african american adults with no known pet allergies who were beginning nonpalliative (first-line) radiation therapy for cancer for a period of at least four weeks following initial diagnosis adults patients with a diagnosis of advanced heart failure admitted to the cardiac care unit or the cardiac observation unit numbers analyzed treatment group (n = ) and control group (n = ) the dog visit group (treatment group) (n = ), friendly human visit group (n = ), or quiet reading group (n = ) volunteer-dog team group (n = ), volunteer only group (n = ), and control group (n = ) dx.doi.org/ . /j.ctim. . . p le ase cite th is article in p re ss as: k am ioka h , e t al. effe ctive n e ss of an im al-assiste d th e rap y: a syste m atic re vie w of ran d om ize d con trolle d trials. c om p lem en t t h er m ed ( ), h ttp ://d x.d oi.org/ . /j.ctim . . . a r t ic l e in p r e s s +m odel y c t im - ; n o. of page s effe ctive n e ss of an im al-assiste d th e rap y outcome compared with the control group, the treatment group showed significant improvement on all measures except for social support and negative psychiatric symptoms. the results of this study showed that animal-assisted activity can promote significant improvements in many clinical aspects among inpatients with schizophrenia no statistically significant differences were found within or between groups in mood, sense of coherence, or two facets of self-perceived health. however, participants described each of the three activities as beneficial compared with controls, the volunteer-dog group had significantly greater decreases in systolic pulmonary artery pressure during (− . mm hg) and after (− . mm hg) and in pulmonary capillary wedge pressure during (− . mm hg) and after (− . mm hg) the intervention. compared with the volunteer-only group, the volunteer-dog group had significantly greater deceases in epinephrine levels during (− . pg/ml) and after (− . pg/ml) and in norepinephrine levels during (− . pg/ml) and after (− . pg/ml) the intervention. after the intervention, the volunteer-dog group had the greatest decrease from baseline in state anxiety sum score compared with the volunteer-only (− . units) and the control groups (− . units) harm three patients who were afraid of dog did not participate in the animal-assisted activity no dog allergy no description conclusion animal-assisted activity should be integrated into the treatment of institutionalized patients with schizophrenia this study was one of few involving aaa (animal-assisted activity) among patients with cancer in a randomized design. one issue that may have affected the findings of present study is that disease progression during the time of the intervention was not measured. side effects of radiation therapy were not assessed. further research is needed with larger samples to identify whether the effects are statistically recognizable animal-assisted therapy improves cardiopulmonary pressures, neurohormone levels, and anxiety in patients hospitalized with heart failure trial registration no description no description no description fund nothing no description grant from the pet care trust foundation, quilcene, washington cost of intervention no description dog visits are no more costly than human visits because all organizations provide dog visits on a volunteer basis no description author antonioli c, et al. allen k, et al. jessen j, et al. citation bmj ; jama ; : — psychological reports ; : — title randomised controlled trial of animal facilitated therapy with dolphins in the treatment of depression the value of service dogs for people with severe ambulatory disabilities avian companionship in alleviation of depression, loneliness, and low morale of older adults in skilled rehabilitation units aim/objective to evaluate the effectiveness of animal facilitated therapy with dolphins, controlling for the influence of the natural setting, in the treatment of mild to moderate depression and in the context of the biophilia hypothesis to assess the value of service dogs for people with ambulatory disabilities to examine the effect of a caged bird on depression, loneliness, and morale of older adults in skilled rehabilitation units setting/place the study was carried out in honduras, and recruitment took place in the united states and honduras environments of study participants two skilled rehabilitation units in nebraska participants outpatients, recruited through announcements on the internet, radio, newspapers, and hospitals forty-eight individuals with severe and chronic ambulatory disabilities requiring use of wheelchairs who were recruited from advocacy and support groups for persons with muscular dystrophy, multiple sclerosis, traumatic brain injury, and spinal cord injury older adults in a skilled rehabilitation unit, self-reported measures of depression, loneliness, and morale dx.doi.org/ . /j.ctim. . . p le ase cite th is article in p re ss as: k am ioka h , e t al. effe ctive n e ss of an im al-assiste d th e rap y: a syste m atic re vie w of ran d om ize d con trolle d trials. c om p lem en t t h er m ed ( ), h ttp ://d x.d oi.org/ . /j.ctim . . . a r t ic l e in p r e s s +m odel y c t im - ; n o. of page s h . k am ioka e t al. table (continued) intervention participants were asked to play, swim, and take care of the animals. they had an introductory session, to explain about dolphin behavior and water safety. the first part of the trial, which took half an hour, was structured so the participants could familiarize themselves with the animals. participants were standing in the water, close to the trainer. the dolphin, following the trainer’s signals, performed trained behaviors (such as a jump or a swim). participants were able to touch the dolphins when close to the trainer. the second part of the trial, another half an hour, was unstructured, and free and spontaneous interactions occurred. participants were snorkeling in the water with the dolphins. in the control group, participants were assigned to an outdoor nature program featuring the same water activities as the animal care program but in the absence of dolphins, to control for the influence of water and other, non-specific, environmental factors. in the outdoor nature program, participants had to swim and snorkel in the barrier coral reef for h a day and had a similar degree of individualized human contact as in the animal care program. participants were informed of the marine ecosystem, the barrier coral reef (the second largest in the world after the great barrier reef of australia), and water safety. both programs were run simultaneously and lasted for a period of two weeks for each group. the treatments were given daily, monday to friday, h per day individuals assigned to the experimental group received assistance dogs month after the study began (in ), and subjects in the wait-list control group months later ( months after the study began). dogs were made available to participants in this study through trainers dedicated to providing dogs to people with disabilities. all the dogs were initially raised in family environments to socialize them. the dogs then entered training designed to teach them how to provide general assistance. following this, each dog was paired with a person with a disability and was given individualized special training to expand the dog’s commands to meet the unique needs of the person to whom it was assigned and to ensure that the person with a disability learned to handle the dog effectively a bird was placed in the room of each subject in the experimental group. care for the birds was provided either at times the subject was not in the room or by having a staff member bring the bird and cage out of the room so that there was no intervention by the investigator through interaction with the subject. the control group had no intervention other than their routine care in the unit. at the end of days, the three instruments were administered again to all subjects (post-test), and the bird was removed. although a relatively short time period, days was the maximum amount of time it could be predicted that a sufficiently large sample would still be in the institution main and secondary outcomes hamilton rating scale for depression, the beck depression inventory, and the zung self rating anxiety scale self-reported assessments of psychological well-being, internal locus of control, community integration, school attendance, part-time work status, self-esteem, marital status, living arrangements, and number of biweekly paid and unpaid assistance hours morale, depression, and loneliness randomization random number table to generate the block allocation sequence individuals were matched on several characteristics, including age, sex, marital status, race, and the nature and severity of the disability, to create pairs. within each pair, individuals were randomly assigned to either the experimental or the wait-list control group no description blinding/masking the allocation sequence was concealed until treatments were assigned. we kept the randomization sequence hidden from the investigators giving the treatments by using a set of opaque numbered sealed envelopes, each containing the allocation for one patient no description no description numbers randomized animal care program group (n = ) and outdoor nature program group (n = ) experimental group (n = ) and wait-list control group (n = ) experimental group (n = ) and control group (n = ) recruitment field research work took place at the roatan institute for marine sciences (roatan, bay islands, honduras) between july and december . after participants had read the information, we asked them for a medical certificate from their treating therapist qualifying individuals from new york, pennsylvania, massachusetts, and connecticut were contacted through advocacy support groups (for example, the muscular dystrophy association, the multiple sclerosis association) a sample of older adults admitted to two midwestern, skilled rehabilitation units participated dx.doi.org/ . /j.ctim. . . p le ase cite th is article in p re ss as: k am ioka h , e t al. effe ctive n e ss of an im al-assiste d th e rap y: a syste m atic re vie w of ran d om ize d con trolle d trials. c om p lem en t t h er m ed ( ), h ttp ://d x.d oi.org/ . /j.ctim . . . a r t ic l e in p r e s s +m odel y c t im - ; n o. of page s effe ctive n e ss of an im al-assiste d th e rap y numbers analyzed animal care program group (n = ) and outdoor nature program group (n = ) experimental group (n = ) and wait-list control group (n = ) experimental group (n = ) and control group (n = ) outcome of the patients randomly assigned to the two groups of treatment, two dropped out of the treatment group after the first week and three withdrew their consent in the control group after they had been randomly allocated. for the participants who completed the study, the mean severity of the depressive symptoms was more reduced in the treatment group than in the control group (hamilton rating scale for depression and beck depression inventory). for the sample analyzed by modified intention to treat and last observation carried forward, the mean differences for the hamilton and beck scores between the two groups was highly significant significant positive changes in all but two dependent measures were associated with the presence of a service dog both between and within groups. psychologically, all participants showed substantial improvements in self-esteem, internal locus of control, and psychological well-being within months after receiving their service dog. socially, all participants showed similar improvements in community integration. demographically, all participants showed increases in school attendance and/or part-time employment. economically, all participants showed dramatic decreases in the number of both paid and unpaid assistance hours with the presence of a companion bird, the experimental group (n = ) showed a significant decrease in depression compared to no decrease in morale or loneliness from the control group (n = ) who were without a bird harm no description no description no description conclusion the therapy was effective in alleviating symptoms of depression after two weeks of treatment. animal facilitated therapy with dolphins is an effective treatment for mild to moderate depression, and is based on a holistic approach, through interaction with animals in nature trained service dogs can be highly beneficial and potentially cost-effective components of independent living for people with physical disabilities use of a companion bird may lessen negative effects of change of residence for older adults trial registration no description no description no description fund the tursiops society onlus and the advice and support given by andrew weil and brian becker of the university of arisona, usa; stephen kellert of yale university, usa; and costantino balestra of the universite libre de bruxelles, belgium. we thank yvonne hartgers, arnoldo javier montoya stone, aida lagos, hector murcia pinto for medical, phycological diagnosis and assistance; the research participants, the psychiatric hospital of tegucigalpa and roatan hospital no description no description cost of intervention no description total calculated costs of initial canine training at $ , , lost investment income on initial training costs at % per annum compounded quarterly; $ per year in animal maintenance; an expected canine service period of years; and $ , $ , and $ per hour for paid human assistance no description reference no. author zisselman mh, et al. villalta-gil v, et al. barak y, et al. citation the american journal of occupational therapy ; : — anthrozoos ; : — am j geriatr psychiatry ; : — title a pet therapy intervention with geriatric psychiatry inpatients dog-assisted therapy in the treatment of chronic schizophrenia inpatients animal-assisted therapy for elderly schizophrenic patients aim/objective to evaluate the effects of pet therapy on geriatric psychiatry inpatients to assess the effectiveness of including a trained therapy dog in an intervention program applied to institutionalized patients with chronic schizophrenia to evaluate the effects of aat on long-stay geriatric schizophrenic patients in a controlled -year study setting/place the -bed wills eye hospital geriatric psychiatric unit in philadelphia saint john of god-mental health services hospital the word of kibbutz givat haim ichud, israel participants elderly persons with chronic age-related psychiatric, medical, and neurologic conditions such as depression, dementia, parkinson’s disease, stroke, and accompanying medical disorders no description adult patients with schizophrenia dx.doi.org/ . /j.ctim. . . p le ase cite th is article in p re ss as: k am ioka h , e t al. effe ctive n e ss of an im al-assiste d th e rap y: a syste m atic re vie w of ran d om ize d con trolle d trials. c om p lem en t t h er m ed ( ), h ttp ://d x.d oi.org/ . /j.ctim . . . a r t ic l e in p r e s s +m odel y c t im - ; n o. of page s h . k am ioka e t al. table (continued) intervention intervention was provided for consecutive days for each group. the intervention for the experimental group consisted of a -h visit with dogs. the subjects had contact with and fed the visiting dogs, were encouraged to reminisce about their own experiences with pets and other animals, and heard a brief talk about the dogs. the control group exercised for h a day while the experimental group was visiting with the dogs. adherence to both treatments of the subject’s daily schedule remained the same. additionally, all subjects continued receiving their psychotropic medications and individual and group psychotherapy sessions the intervention program was applied by a trained psychologist. it consisted of sessions of min each; two sessions were given per week. the intervention group with therapy dog (lg + d) was directed by the psychologist, who was assisted by a two-year-old, female labrador, certified as a therapy dog. the dog was accompanied by her handler. the group without a dog (lg) was directed by the same psychologist. the intervention was based on integrated psychological treatment (lpt) designed by brenner et al. ( ). this treatment for patients with schizophrenia has been developed to work as much on cognitive functioning as on social functioning. it is a group intervention structured program with five subprograms: cognitive differentiation, social perception, verbal communication, social skills training, and interpersonal problem solving. they are hierarchically ordered, so the first interventions are directed to basic cognitive skills, the next interventions transform the cognitive skills into social and verbal behaviors, and the last ones train the patients in the solution of more complex interpersonal problems. sessions for the lg + d group were designed so that the handler interacted with the dog and the therapist, the therapist interacted with the patient and the handler, and patients interacted with the dog and therapist. this design was used in order to minimize interactions between handler and patients, as the handler was not present in the lg group aat was undertaken once weekly on the same day. the therapists and assisting animals came to the ward at : am, and the group session lasted h. three aat counselors from the pet (pet enrichment therapy) program at kibbutz givat haim ichud, israel, were regularly accompanied by a psychiatric nurse, providing a ratio of : . caretakers to patients. each patient was provided with his own dog or cat, according to personal preference. sessions included ‘‘adl modeling activities’’ such as petting, feeding, grooming, bathing, and teaching the animals to walk on a lead for greater mobility. control-group patients were assembled for reading and discussion of current news for a similar duration on the same days that aat was undertaken. these sessions were conducted by three certified nurses so as to keep the ratio of staff to patients equal to that of the aat group main and secondary outcomes self-care functioning, disoriented behavior, depressed or anxious mood, irritable behavior, and withdrawn behavior symptoms, social competence, and subjective perception of quality of life. a schedule assessing adverse reactions to animals, the wechsler adult intelligence scale, and the mini mental state examination were used as screening instruments, in order to confirm inclusion of patients into the sample. social-adaptive functioning evaluation (safe) randomization no description patients with chronic schizophrenia were randomly selected from a computerized register no description blinding/masking the nursing staff member was also blind to group assignments all patients were evaluated by a trained psychologist blind to the patient’s intervention group at baseline and after the intervention program (patients were asked not to mention details about the therapy sessions and the psychologist was also not supposed to gather information about their intervention group) assessor (clinical psychologist) numbers randomized per therapy intervention (n = ) or an exercise intervention (n = ) intervention group with therapy dog (n = ) and control group without a dog (n = ) animal assisted treatment group (n = ) and control group (n = ) recruitment elderly persons with chronic age-related psychiatric, medical, and neurologic conditions such as depression, dementia, parkinson’s disease, stroke, and accompanying medical disorders only those patients staying at long term care facilities were included; these patients cannot live in the community, due to their social and clinical characteristics. a long course of the disorder and cognitive or social deficits characterizes patients staying in these facilities subjects in the study were chronic schizophrenic patients, who were long-stay residents at the abarbanel mental health center, bat yam, israel dx.doi.org/ . /j.ctim. . . p le ase cite th is article in p re ss as: k am ioka h , e t al. effe ctive n e ss of an im al-assiste d th e rap y: a syste m atic re vie w of ran d om ize d con trolle d trials. c om p lem en t t h er m ed ( ), h ttp ://d x.d oi.org/ . /j.ctim . . . a r t ic l e in p r e s s +m odel y c t im - ; n o. of page s effe ctive n e ss of an im al-assiste d th e rap y numbers analyzed per therapy intervention (n = ) or an exercise intervention (n = ) intervention group with therapy dog (n = ) and control group without a dog (n = ) animal assisted treatment group (n = ) and control group (n = ) outcome no significant differences in the multidimensional observation scale for elderly subjects (moses) scores were found between or within groups before and after the interventions. there was a nonsignificant tendency for subjects who received the pet intervention to have less irritable behavior after treatment. however, women with dementia who received either pet therapy or exercise intervention had improved irritable behavior scores after treatment patients in the lg + d group showed significant improvements in the lsp social contact score, in the positive and negative symptom dimension and total score of the panss, and in quality of life related with social relationships. patients in the lg group showed significant positive changes in positive and general symptoms and total panss score. no differences were found between the two groups before and after the application of the intervention the social adaptive functioning evaluation scores at termination showed significant improvement compared with baseline scores and were significantly more positive for the aat group on both total safe score and on the social functions subscale harm no description nothing no description conclusion this pilot study demonstrates the need for further research on animal-assisted interventions with hospitalized elderly persons. differential improvement in women with dementia also requires further investigation introducing a dog into the psychosocial intervention for patients with schizophrenia produced some positive outcomes. however, the results of the study are not conclusive and must be interpreted cautiously aat proved a successful tool for enhancing socialization, adls, and general well-being trial registration no description no description no description fund a grant from sandoz/jeffs companion animal center the financial help of the la caixa foundation and was supported by the spanish ministry of health, instituto de salud carlos lll, cibersam. the authors declare that no competing interests exist no description cost of intervention no description no description no description reference no. author pedersen i, et al. carolyn am, et al. citation anthrozoos ; : — anthrozoos ; : — title farm animal-assisted intervention for people with clinical depression: a randomized controlled trial animal-assisted therapy in psychiatric rehabilitation aim/objective to examine potential changes in mental health in people with clinical depression, while working with farm animals as the only task on the farm to evaluate whether patients in the animal-assisted therapy group would show a greater increase in observed appropriate social behaviors than the control group patients who did not receive animal-assisted therapy setting/place eleven dairy farms from six different counties in norway terrell state hospital, terrell, texas participants adult patients with clinical depression inpatient participants at a large state psychiatric facility intervention the intervention consisted of work and interaction with farm animals twice a week for weeks. the time for each session spent on the farm per day varied from . to . h due to differences in farm size, degree of mechanization, and the amount of work. a first introductory visit was used by the participants to get familiar with the farm and farmer. on the following visit, the participants worked together with the farmer in the cowshed. the participants were allowed to choose work such as grooming, mucking, feeding, taking care of the calves, and milking. they could also choose to spend their time in physical contact with the animals. the participants did not take part in any other work at the farm the experimental aat group had animals visit the class each day. the animals included dogs, rabbits, ferrets, and guinea pigs. the animals remained for the entire class period and were moved from patient to patient. patients in the group were allowed to observe the animals or interact with the animals — hold them, pet them, and/or play with them as long as they did not disrupt the group. patients were not required to participate directly with any animals; such participation was voluntary and the patients determined the level of individual involvement. however, there was only one female patient out of all of the aat subjects that elected to not interact directly with the animals dx.doi.org/ . /j.ctim. . . p le ase cite th is article in p re ss as: k am ioka h , e t al. effe ctive n e ss of an im al-assiste d th e rap y: a syste m atic re vie w of ran d om ize d con trolle d trials. c om p lem en t t h er m ed ( ), h ttp ://d x.d oi.org/ . /j.ctim . . . a r t ic l e in p r e s s +m odel y c t im - ; n o. of page s h . k am ioka e t al. table (continued) main and secondary outcomes depression anxiety, and self-efficacy social behavior scale randomization the randomization was conducted by a researcher blinded to farm and participants no description blinding/masking no description it was not possible to keep the rater blind to condition since the behavior observations were made daily while the group was being conducted. however, neither those conducting the class nor the rater was privy to the design or intent of the study, and hence they remained essentially ‘‘blind’’. data entry was by an individual who was also blind to the treatment conditions numbers randomized the intervention group (n = ) and the control group (n = ) animal-assisted therapy group (n = ) and control group (n = ) recruitment thirty-five participants were recruited through advertisements, invitation letters from the norwegian labour and welfare service, and contact with health personnel. potential participants received a letter describing the intervention, and the possibility to be allocated to either a control or an intervention group was stated there were inpatient participants ( % male and % female) at a large state psychiatric facility numbers analyzed the intervention group (n = ) and the control group (n = ) animal-assisted therapy group (n = ) and control group (n = ) outcome a significant decline in depression and a significant increase in self-efficacy were seen in the intervention group between recruitment and of intervention. in the control group, no significant changes were found. no significant differences were found when comparing change in mental health measures in the intervention and control groups. however, more subjects in the intervention group ( ) than in the control group ( ) had clinically significant change, indicating that animal-assisted intervention in green care could be beneficial for subgroups of clients and act as a useful supplement within mental health care animal-assisted therapy patients interacted more with other patients. similarly, there was a main effect for weeks, with improvement in scores over time but no interaction between weeks and groups. there was a similar finding for the aat group; patients smiled and showed pleasure significantly more often than the control group patients and thus improved over the four weeks with no interaction between weeks and groups harm no description no description conclusion those who participated in animal-assisted therapy experienced statistically significant changes in depression and generalized self-efficacy. although the changes were not significantly different from those in the control group, more participants in the intervention could be beneficial for subgroups of clients and act as a useful supplement within mental health care these data suggest that aat plays an important role in enhancing the benefits of conventional therapy and demonstrates the benefit of including a non-aat group for comparison. the study also demonstrates the importance of using longitudinal, repeated measure designs. previous studies may have failed to find significant effects because they were restricted to shorter intervals for measuring outcomes trial registration no description no description fund a grant from the research council of norway, and agricultural agreement no description cost of intervention no description no description dx.doi.org/ . /j.ctim. . . article in press+modelyctim- ; no. of pages effectiveness of animal-assisted therapy table international classification of target diseases in each article. chapter icd code classification reference no. (detail icd code) a -b certain infectious and parasitic diseases c -d neoplasms (the unidentified due to many site of cancer) d -d diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism e -e endocrine, nutritional and metabolic diseases f -f mental and behavioral disorders , — (f ), , (f - ), (the unidentified due to including many geriatric diseases), (f - ) g -g diseases of the nervous system h -h diseases of the eye and adnexa h -h diseases of the ear and mastoid process i -i diseases of the circulatory system (i . ) j -j diseases of the respiratory system k -k diseases of the digestive system l -l diseases of the skin and subcutaneous tissue m -m diseases of the musculoskeletal system and connective tissue n -n diseases of the genitourinary system o -o pregnancy, childbirth and the puerperium p -p certain conditions originating in the perinatal period q -q congenital malformations, deformations and chromosomal abnormalities r -r symptoms, signs and abnormal clinical and laboratory finding not elsewhere classified s -t injury, positioning and certain other consequences of external causes (t - ) v -y external causes of morbidity and mortality z -z factors influencing health status and contact with health services u -u code for special purpose — unidentified because many illnesses were mixed, we could not identify it. a g s w b t c o g q w m q groups before and after the interventions. there was a non-significant tendency for subjects who received the dog intervention to have less irritable behavior after treat- ment. however, women with dementia who received either pet therapy or exercise intervention had improved irritable behavior scores after treatment. a unique study was performed to examine potential changes in mental health in people with clinical depression who were working with farm animals as the only task on a farm. the intervention consisted of work and interac- tion with farm animals twice a week for weeks. those who participated in animal-assisted therapy experienced statistically significant changes in depression and gener- alized self-efficacy. additionally, more participants in the intervention could have been beneficial for the subgroups of clients and served as a useful supplement within mental health care, although these changes were not significantly different from those in the control group. please cite this article in press as: kamioka h, et al. effectiv randomized controlled trials. complement ther med ( ), h a study evaluated whether patients such as those with a mental illness diagnosis as well as a history of alcohol/drug abuse or other addictive behaviors in the aat group would show a greater increase in observed fi i d t ppropriate social behaviors than patients in the control roup. aat patients interacted more with other patients. imilarly, there was a main effect that lasted for weeks, ith improvement in scores over time but no interaction etween weeks and groups. there was a similar finding for he aat group; patients smiled and showed pleasure signifi- antly more often than the control group and thus improved ver four weeks, with no interaction between weeks and roups. uality assessment e evaluated items from the cochrane’s criteria list in ore detail (table ). inter-rater reliability metrics for the uality assessment indicated substantial agreement for all items (percentage agreement % and k = . ). this assessment evaluated the quality of how the main eness of animal-assisted therapy: a systematic review of ttp://dx.doi.org/ . /j.ctim. . . ndings of the study were summarized in the written report. n general, there was a remarkable lack of execution and/or escription in the concealment, blinding, and intention-to- reatment (itt) analysis. the items for which the description dx.doi.org/ . /j.ctim. . . article in press+modelyctim- ; no. of pages h. kamioka et al. table evaluation of the quality of methodology for each article. no criteria list reference no. present description no/ rate (%) was the method of randomization adequate? ? y y y y y ? y n y ? % was the treatment allocation concealed? ? n ? y y y y y ? n ? % were the groups similar at baseline regarding the most important prognostic indicators? y y y y y y y y y y y % was the patient blinded to the intervention? ? n ? y y y n n n n y % was the care provider blinded to the intervention? ? n n y ? ? y n n n y % was the outcome assessor blinded to the intervention? ? ? ? n ? n ? y y n y % were cointerventions avoided or similar? y n y y y y y ? ? y y % was the compliance acceptable in all groups? y y y y y y y y ? y y % was the drop-out rate described and acceptable? y y y y n n y y y n y % was the timing of the outcome assessment in all groups similar? y y y y y y y y y y y % did the analysis include an intention-to-treat analysis? n n y y y n n ? n y y % present description no/ — — rate (%) % % % % % % % % % % % — — w f c v i t a m t d o a c a t d p a ( c t i w n e c i t c t d t o e s r p y, yes; n, no; ?, do not know or unclear; n/a, not applicable. as lacking (very poor; < %) in many studies were as ollows (present ratio; %): ‘‘was the treatment allocation oncealed?’’ ( %); ‘‘was the patient blinded to the inter- ention?’’ ( %); ‘‘was the care provider blinded to the ntervention?’’ ( %); ‘‘was the outcome assessor blinded o the intervention?’’ ( %); and ‘‘did the analysis include n itt analysis?’’ ( %). eta-analysis here were three rcts on schizophrenia and two rcts on epression. we could not perform a meta-analysis because f heterogeneity by difference of outcome measurement nd intervention method (e.g., in dog, and in dog or at). dverse events wo studies reported no adverse events, , and one study please cite this article in press as: kamioka h, et al. effectiv randomized controlled trials. complement ther med ( ), h escribed three patients who were afraid of dogs and did not articipate in the intervention. there were no descriptions bout adverse events in the other eight studies — , — table ). f a e osts of intervention wo studies , described information about the cost of ntervention (table ). johnson et al. showed that dog visits ere no more costly than human visits because all orga- izations provide dog visits on a volunteer basis. allen t al. showed that the total calculated costs of initial anine training was $ , , lost investment income on nitial training costs was % per annum compounded quar- erly, animal maintenance was $ per year, the expected anine service period was years, and paid human assis- ance ranged from $ to $ per hour. iscussion his is the first sr of the cure effectiveness of att based n rcts. our study is unique because it summarized the vidence for each target disease according to icd- clas- ification. we assume that this study will be helpful to esearchers who want to understand the effect of att com- rehensively, and it could provide indispensable information eness of animal-assisted therapy: a systematic review of ttp://dx.doi.org/ . /j.ctim. . . or the organization that is going to make the guidelines ccording to each disease. among the rcts that were identified, target dis- ases and/or symptoms included schizophrenia, depression, dx.doi.org/ . /j.ctim. . . in+model p w m c o m n o t p o v d w w a i i t m m a t a e i t d o v f t c a w s d d p p t a ‘ s a ‘ t v w articleyctim- ; no. of pages effectiveness of animal-assisted therapy cancer, advanced heart failure, severe ambulatory disabil- ity, older adults admitted to skilled rehabilitation units, elderly persons with chronic psychiatric, medical, and neu- rologic conditions, and a mental illness diagnosis, as well as a history of alcohol/drug abuse or other addictive behaviors, and intervention methods included various approaches such as dog, dolphin, bird, cat, cow, rabbit, ferret, and guinea pig. tendency of target disease and outcome the most commonly reported target diseases were ‘‘mental and behavioral disorders (f - , — , and unclear)’’, , , — and the effect of aat on these diseases was improved mental health (e.g., anxiety and mood), qol, and social behavior. the main reason given in these arti- cles for improved mental health was that the feeling and memory of an animal allowed the patient to be comfort- able, pleasant, and happy. for example, le roux and kemp reported the following narrative comments by participants: ‘‘we talked to each other about the dog’’, ‘‘visits from the dog made me think about my own dog when i was young’’, and ‘‘at night i think about pietie (the dog) and i smile’’. in studies about the effects of aat on anxiety, discomfort, fear, and pain, aat has been variably applied as an accessory treatment for persons with addictions such as alcohol/drug abuses and as evasion of direct discomfort for undergoing medical treatment for cancer. the other reported target diseases were ‘‘diseases of the circulatory system (i . )’’ and ‘‘injury, positioning, and certain other consequences of external causes (t - )’’. the former evaluated hemodynamic parameters, cardiac index, and neurohormone levels as primary out- comes. the latter assessed psychological variables such as well-being, internal locus of control, and community inte- gration. improvements seen in these studies were mainly due to effects of buffering a person’s reactivity to mental stressor , and providing a sense of comfort and safety, and diverting attention away from the immediate stressors to a more pleasurable and calming interaction. validity of overall evidence based on quality assessment overall evidence and quality assessment the cochrane’s list is the most important tool related to the internal validity of trials. in this sr, there were seri- ous problems with the conduct and reporting of the target studies. our review especially detected omissions of the fol- lowing descriptions: method used to generate concealment, blinding, and itt analysis. descriptions of these items were lacking (very poor; < %) in many studies. in the cochrane review, the eligibility criteria for a meta-analysis are strict, and for each article, heterogene- ity and low quality of reporting must first be excluded. we could not perform a meta-analysis. due to poor methodo- please cite this article in press as: kamioka h, et al. effectiv randomized controlled trials. complement ther med ( ), h logical and reporting quality and heterogeneity, there was insufficient evidence in the studies of aat, and we are there- fore unable to offer clearly any conclusions about the effects of aat based on rcts. n n d c press moreover, the consort and the consort for non- harmacological trials checklists are relatively new, but it as shown that the study protocol description and imple- entation for aat studies should be subjected to these hecklists. verall evidence ost importantly, a specific adverse effect or harmful phe- omenon such as allergy or fear for animals was not clearly bserved overall, although we should consider the limita- ions and biases of these findings in the context of aat atients/participants who are likely to enjoy animals. in ther words, a person who dislikes animals will refuse inter- ention from the beginning. the results of this study suggested that the rcts con- ucted have been of relatively low quality. only two rcts ere evaluated as ‘‘good description ( — %)’’. , aat ith dolphins is an effective treatment for mild to moder- te depression, and is based on a holistic approach through nteraction with animals in nature. aat also plays an mportant role in enhancing the benefits of conventional herapy in psychiatric rehabilitation. furthermore, aat ay have positive effects on schizophrenia and/or serious ental disorders. we assume that the direct effects of aat re generally improvement of mental health, elimination of he sense of isolation, and an improvement in qol. although further accumulation of rct data is necessary, at may be effective treatment for the following dis- ases and symptoms: cancer and/or advanced life-limiting llnesses that affect mental state and qol, impaired circula- ory function with mechanical assistance, autistic spectrum isorders involving communicative skills, and self-reported utcomes for hospitalized patients and other patients with arious clinical conditions. uture research agenda to build evidence able shows the future research agenda for studies of the ure effect by aat. researchers should use the appropri- te checklists for research design and intervention methods, hich would lead to improvement in the quality of the tudy, and would contribute to the accumulation of evi- ence. researchers should also present not only efficacy ata, but also a description of any adverse events or harmful henomena and the reasons for withdrawals and non- articipation. many studies in this review did not describe hese factors. as a gradual increase of intervention is necessary in cure nd rehabilitation programs, it is easy to assign settings like ‘stage’’ for the intervention, such as first stage and second tage. therefore, we also expect to understand the results nd detailed descriptions of ‘‘pragmatic trials’’ as well as ‘explanatory trials’’ for the treatment effect by aat. bowen et al. suggested that public health is moving oward the goal of implementing evidence based inter- ention. but the feasibility of possible interventions, and hether comprehensive and multilevel evaluations are eness of animal-assisted therapy: a systematic review of ttp://dx.doi.org/ . /j.ctim. . . eeded to justify them, must be determined. it is at least ecessary to show the cost of such interventions. intro- uction of an interventional method must be based on its ost—benefit, cost—effectiveness, and cost—utility. dx.doi.org/ . /j.ctim. . . article in press+modelyctim- ; no. of pages h. kamioka et al. table overall evidence and future research agenda to build evidence. overall evidence in the present research agenda after having premised study environment limited to the people who liked animals very much, aat may be an effective treatment for mental and behavioral disorders such as depression, schizophrenia, and alcohol/drug addictions, and is based on a holistic approach, through interaction with animals in nature. . satisfactory description and methodology including the consort and the consort for nonpharmacological trials . description of the reason of participants refused (non-participation) . description of adverse effects (e.g., allergy, infection, bit, and fear) and withdrawals . description of intervention dose (if pragmatic intervention) . description of cost . development of the original check-list for aat c r t a b a s t i ( p a i a t t m a i d l r w r s p a c i m b a t w ( n a c t a a s i f f t r h m c n e n d n acknowledgements in addition, aat as an intervention is unique and ompletely different than pharmacological or traditional ehabilitation methods. therefore, it may be necessary o add some original items like herbal intervention, cupancture, traditional chinese medicine and alneotherapy to the consort checklist as lternative and/or complementary medicines. trength and limitations his review had several strengths: ( ) the methods and mplementation registered high on the prospero database; ) it was a comprehensive search strategy across multi- le databases with no data restrictions; ( ) there were high greement levels for quality assessment of articles; and ( ) t involved detailed data extraction to allow for collecting all rticles’ content into a recommended structured abstract. he conduct and reporting of this review also aligned with he prisma statement for transparent reporting of srs and eta-analyses. this review had several limitations that should be cknowledged. selection criteria were common across stud- es, as described above; however, bias remained due to ifferences in eligibility for participation in each study. pub- ication bias was a factor. although there was no linguistic estriction in the eligibility criteria, we searched studies ith only english and japanese key words. in addition, this eview reported on a relatively small and heterogeneous ample of studies. moreover, we could not follow standard rocedures for estimating the effects of moderating vari- bles. onclusion n a study environment limited to the people who like ani- als, aat may be an effective treatment for mental and ehavioral disorders such as depression, schizophrenia, and lcohol/drug addictions, and is based on a holistic approach please cite this article in press as: kamioka h, et al. effectiv randomized controlled trials. complement ther med ( ), h hrough interaction with animals in nature. to most effectively assess the potential benefits of aat, it ill be important for further research to utilize and describe ) rct methodology when appropriate, ( ) the reasons for w h s s on-participation, ( ) intervention dose, ( ) adverse effects nd withdrawals. ontributors h, jk, sp, so, ho, sh, hp, to, and ta conceived the study nd take responsibility for the summary of included studies nd data extraction. kt and ym are the guarantors. hk and o designed the study. ho, sp, th and hk assessed the qual- ty of articles. all authors critically described the manuscript or important intellectual content. unding his study was supported by the health and labour sciences esearch grants (research on health security control: id no. - ; representative; dr. tsutani k) from the japanese inistry of health, labour and welfare of japan in . onflict of interest statement one declared. thical approval ot required. ata sharing o additional data available. eness of animal-assisted therapy: a systematic review of ttp://dx.doi.org/ . /j.ctim. . . e would like to express our appreciation to ms. rie igashino and ms. rinako kai (paperwork), and ms. satoko ayama (all searches of studies) for their assistance in this tudy. dx.doi.org/ . /j.ctim. . . please cite this article in press as: kamioka h, et al. effectiveness of animal-assisted therapy: a systematic review of randomized controlled trials. complement ther med ( ), http://dx.doi.org/ . /j.ctim. . . article in press+modelyctim- ; no. of pages effectiveness of animal-assisted therapy appendix. references to studies excluded in this review exclusion no. author. journal (year) title reason of exclusion nothing a study of animal-assisted therapy and weekday placement of a social therapy not acceptable livingston g, et al. (nothing) the effectiveness and cost-effectiveness of sensory, psychological and behavioral interventions for managing agitation in older adults with dementia ongoing herrero p, et al. clinical rehabilitation ( ) study of the therapeutic effects of a hippotherapy simulator in children with cerebral palsy: a stratified single-blind randomized controlled trial not animal-assisted therapy cano a. ( ) randomized control trial of an animal-assisted intervention with adjudicated youth not detected iammateo n, et al. ( ) animal therapy in a pediatric setting not detected beck ce, et al. the army medical department journal ( ) the effects of animal-assisted therapy on wounded warriors in an occupational therapy life skills program not randomized controlled trial rhodes re, et al. preventive medicine ( ) pilot study of a dog walking randomized intervention: effects of a focus on canine exercise not curative effect berget b, et al. ann ist sanita ( ) animal-assisted therapy with farm animals for persons with psychiatric disorders not randomized controlled trial moretti f, et al. psychpgeriatrics ( ) pet therapy in elderly patients with mental illness not randomized controlled trial silvaborges, et al. arq neuropsiquiatr ( ) therapeutic effects of a horse riding simulator in children with cerebral palsy not animal therapy kumasaka t, et al. journal of the japanese association of rural medicine ( ) study of effectiveness of animal-assisted therapy for patients with mental illness in nursing support (in japanese) not curative effect tsai cc, et al. anthrozoos ( ) the effect of animal-assisted therapy on stress responses in hospitalized children not curative effect coakley ab, et al. complementary therapies in clinical practice ( ) creating a therapeutic and healing environment with a pet therapy program not randomized controlled trial martin c, et al. anthrozoos ( ) animal-assisted therapy in the treatment of substance dependence not randomized controlled trial braun c, et al. complementary therapies in clinical practice ( ) animal-assisted therapy as a pain relief intervention for children not randomized controlled trial leroux mc, et al. jornal compilation ( ) effect of a companion dog on depression and anxiety levels of elderly residents in a long-term care facility not curative effect berger am, et al. ( ) effects of pet therapy on pain in cancer patients not published yet toukhsati s, et al. ( ) the use of alternative therapies to treat geriatric depression submit preparation at present dx.doi.org/ . /j.ctim. . . please cite this article in press as: kamioka h, et al. effectiveness of animal-assisted therapy: a systematic review of randomized controlled trials. complement ther med ( ), http://dx.doi.org/ . /j.ctim. . . article in press+modelyctim- ; no. of pages h. kamioka et al. appendix (continued ) exclusion no. author. journal (year) title reason of exclusion parish-plass n. clin child psychology and psychiatry ( ) animal-assisted therapy with children suffering from insecure attachment due to abuse and neglect: a method to lower the risk of intergenerational transmission of abuse? not randomized controlled trial banks mr, et al. j am med dir assoc ( ) animal-assisted therapy and loneliness in nursing homes: use of robotic versus living dogs not curative effect cole km, et al. american journal of critical care ( ) animal-assisted therapy in patients hospitalized with heart failure reduplication prothmann a, et al. anthrozoos ( ) dogs in child psychotherapy: effects on state of mind not randomized controlled trial motooka m, et al. mja ( ) effect of dog-walking on autonomic nervous activity in senior citizens not curative effect colombo g, et al. archives of gerontology and geriatrics ( ) pet therapy and institutionalized elderly: a study on cognitively unimpaired subjects not curative effect anonymous (memo). harvard men’s health watch ( ) dolphins for the doldrums? not original article nathans-barel i, et al. psychother psychosom ( ) animal-assisted therapy ameliorates anhedonia in schizophrenia patients not randomized controlled trial cole km. circulation ( ) innovative interventions to improve management and outcomes in heart disease not curative effect stasi mf, et al. arch. gerontol. geriatr. suppl. ( ) pet-therapy: a trial for institutionalized frail elderly patients not randomized controlled trial kovacs z, et al. clinical rehabilitation ( ) animal-assisted therapy for middle-aged schizophrenic patients living in a social institution. a pilot study not randomized controlled trial bouchard f, et al. ( ) a magical dream: a pilot project in animal-assisted therapy in pediatric oncology not original article richeson ne. american journal of alzheimer’s disease and other domentias ( ) effects of animal-assisted therapy on agitated behaviors and social interactions of older adults with dementia not randomized controlled trial barker sb, et al. the journal of ect ( ) effects of animal-assisted therapy on patients’ anxiety, fear, and depression before ect not randomized controlled trial johnson ra, et al. american behavioral scientist ( ) human-animal interaction: a complementary/alterative medical (cam) intervention for cancer patients not curative effect martin f, et al. western journal of nursing research ( ) animal-assisted therapy for children with pervasive developmental disorders not randomized controlled trial banks mr, et al. medical sciences ( ) the effects of animal-assisted therapy on loneliness in an elderly population in long-term care facilities not curative effect dx.doi.org/ . /j.ctim. . . article in press+modelyctim- ; no. of pages effectiveness of animal-assisted therapy appendix (continued ) exclusion no. author. journal (year) title reason of exclusion kaminski m, et al. children’s health care ( ) play and pets: the physical and emotional impact of child-life and pet therapy on hospitalized children not curative effect kanamori m, et al. american journal of alzheimer’s disease and other domentias ( ) a day care program and evaluation of animal-assisted therapy (att) for the elderly with senile dementia not randomized controlled trial kingwell ba, et al. clinical autonomic research ( ) presence of a pet dog and human cardiovascular responses to mild mental stress not curative effect hall pl, et al. british journal of nursing ( ) pets as therapy: effects on social interaction in long-stay psychiatry not randomized controlled trial bernstein pl, et al. anthrozoos ( ) animal-assisted therapy enhances resident social interaction and initiation in long-term care facilities not curative effect panzer-koplow s, et al. bell and howell information and learning ( ) effects of animal-assisted therapy on depression and morale among nursing home residents not curative effect churchill m, et al. journal of psychosocial nursing ( ) using a therapy dog to alleviate the agitation and desocialization of people with alzheimer’s disease not randomized controlled trial hansen km, et al. anthrozoos ( ) companion animals alleviating distress in children not randomized controlled trial counsell cm. sc. in nursing ( ) animal assisted therapy and the individual with spinal cord injury not randomized controlled trial banman jk, et al. the journal of pastoral care ( ) animal-assisted therapy with adolescents in a psychiatric facility not original article folse eb, et al. anthrozoos ( ) animal-assisted therapy and depression in adult college ents not randomized controlled trial stud references . munoz lasa s, ferriero g, brigatti e, valero r, 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http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref http://refhub.elsevier.com/s - ( ) - /sbref 	effectiveness of animal-assisted therapy: a systematic review of randomized controlled trials 	introduction 	methods 	criteria for considering studies included in this review 	types of studies 	types of participants 	types of intervention and language 	types of outcome measures 	search methods for identification of studies 	bibliographic database 	search strategies 	registry checking 	handsearching, reference checking, and other 	review methods 	selection of trials 	risk of bias (quality) assessment 	summary of studies and data extraction 	benefit, harm, and cost 	analysis 	research protocol registration 	results 	study selection 	study characteristics 	quality assessment 	meta-analysis 	adverse events 	costs of intervention 	discussion 	tendency of target disease and outcome 	validity of overall evidence based on quality assessment 	overall evidence and quality assessment 	overall evidence 	future research agenda to build evidence 	strength and limitations 	conclusion 	contributors 	funding 	conflict of interest statement 	ethical approval 	data sharing 	acknowledgements 	appendix references to studies excluded in this review 	references development and implementation of a novel child life protocol to enhance psychosocial support for pediatric awake craniotomies: technical note neurosurgical focus neurosurg focus ( ):e , awake craniotomies are an important tool to miti-gate the risks of postoperative neurological deficits in resective neurosurgery that involves eloquent language and or motor cortices. whereas the procedure is well documented in adult cohorts with favorable surgi- cal results, there are only scattered case reports and se- ries in the pediatric literature. , the existing pediatric literature demonstrates that awake craniotomy can play a crucial role in the safe resection of brain lesions in close proximity to language and motor cortex. unfortunately, published results of awake craniotomy in younger children (age < years) are uncommon, perhaps given the com- mon perspective that eloquent functions will recover or reorganize after ithe njury in young children. despite this commonly held view, the literature and common practice demonstrate otherwise; there are many examples of chil- dren with a history of early injury to eloquent cortex (e.g., hemispherotomy) who do not demonstrate full recovery. thus, developing and refining methods for eloquent corti- cal mapping in young children is an important priority. awake craniotomies in young children can be challeng- ing given the psychological stress of undergoing an awake procedure. cooperation with language and motor mapping tasks during this stress is crucial. for this reason, it has previously been suggested that children under the age of years who require language mapping should undergo chronic electrode implantation for extraoperative map- ping. however, successful awake craniotomies have been performed in children younger than years, and to our knowledge in children as young as years. the ability to ensure that pediatric patients psychologically tolerate the open craniotomy process is perhaps the greatest limitation in the application of this technique in the preadolescent and even adolescent age group. in this paper, we describe the development and imple- mentation of a unique child life protocol to increase the success of awake craniotomy in pediatric neurosurgery patients. it is well documented that psychosocial sup- port by the involved providers is critical in the process of patient satisfaction and tolerance of the procedure, abbreviations ccls = certified child life specialist. submitted september , . accepted november , . include when citing doi: . / . .focus . * m.m.m. and d.o.p. contributed equally to this work. development and implementation of a novel child life protocol to enhance psychosocial support for pediatric awake craniotomies: technical note *michael m. mcdowell, md, , daniela ortega peraza, ms, ccls, and taylor j. abel, md , , division of neurological surgery, upmc children’s hospital of pittsburgh; department of neurological surgery, university of pittsburgh; department of child life, upmc children’s hospital of pittsburgh; and department of bioengineering, university of pittsburgh, pennsylvania awake craniotomies are a crucial tool for identifying eloquent cortex, but significant limitations frequently related to patient tolerance have limited their applicability in pediatric cases. the authors describe a comprehensive, longitudinal protocol developed in collaboration with a certified child life specialist (ccls) in order to enhance patient experiences and develop resiliency related to the intraoperative portion of cases. this protocol includes preoperative conditioning, intraoperative support, and postoperative positive reinforcement and debriefing. a unique coping plan is developed for each prospective patient. with appropriate support, awake craniotomy may be applicable in a wider array of preadoles- cent and adolescent patients than has previously been possible. future prospective studies are needed to validate this approach. https://thejns.org/doi/abs/ . / . .focus keywords pediatric; awake craniotomy; child life; psychosocial; support neurosurg focus volume • february ©aans , except where prohibited by us copyright law unauthenticated | downloaded / / : am utc mcdowell et al. neurosurg focus volume • february and there have been reports regarding the use of precon- ditioning with the supervision of a psychiatrist in pedi- atric patients. however, to date there is no systematic, longitudinal approach to providing this support in pedi- atric patients. we provide our novel protocol driven by collaboration with a certified child life specialist (ccls) dedicated to ensuring young patients’ comfort and com- pliance during awake craniotomies. methods we sought to develop and implement a novel child life protocol designed to enhance the patient experience and compliance surrounding awake craniotomy as well as strengthening the patient’s ability to tolerate the pro- cess. the protocol was developed by the child life service (d.o.p. in conjunction with the senior author [t.j.a.]). our protocol is divided into preoperative, intraoperative, and postoperative phases (fig. ). preoperative phase the ccls reaches out to the patient’s caregivers once an awake craniotomy has been scheduled at our institution. an in-person meeting is offered, but if declined, a conver- sation is scheduled by telephone. the child life program and available services are discussed, followed by time to provide preparation and answer questions and concerns. this allows for the patient and caregivers to express their questions and understanding of the surgery and the hos- pital stay. during these conversations several misconcep- tions regarding surgery and the hospital may arise, and the ccls can address the concerns and provide education. part of the conversation is getting to know the patient’s hospitalization background and whether it has been a posi- tive or negative experience so that it can be addressed, and reassuring the patient and family of the staff’s commit- ment to meet all their needs in the best possible way. there are patients who learn best in a hands-on experi- ence, and a tour of the facilities and operating rooms is offered for those interested. this would also allow for the hospital to be familiar and for the patient and their family to know what to expect on the day of surgery. during a hospital tour the ccls may have a medical play session with the patient to familiarize him or her with medical equipment and see it in a nonthreatening way. photos of the operating room and setup for an awake craniotomy are available for review and discussion. these can be re- viewed during the tour, or at home in the form of a prepa- ration booklet to be reviewed with parental supervision. the photos and preparation booklets include descriptions in a child-friendly vocabulary and also explain the sensory experience at each step. specific experiences include the focal sensory blockade using local anesthetic injections, minimal hair shaving, mayfield pin placement, and the approximate location and extent of linear scalp incisions. based on the conversations with the patient and care- givers, an individualized coping plan for all phases of the hospitalization is developed with input from the patient and family. there is a need for individualized coping plans because every patient has different coping needs and interests. customizing the plan allows the patient to feel more comfortable in the hospital, and it gives them control by the ccls providing choices of coping methods that are designed with the patient’s interests in mind. the creation and implementation of the coping plan is geared to the hospitalization because it gives the patient control of how to positively manage their needs when things get stressful and difficult. throughout this process rapport is developed between the patient and ccls, which is essen- tial for the day of the surgery. intraoperative phase on the day of surgery, the ccls meets the patient and family in the preoperative area to address questions and provide support for anxiety. the patient is taken to the op- erating room with the ccls present to provide support, answer last-minute questions, and activate the coping plan as needed until sedation has taken effect. later, the ccls is present prior to wakening the patient intraoperatively. the ccls’s presence during the start of anesthesia is criti- cal, because %– % of children will display significant emotional and behavior stress in the immediate preopera- tive period, with a similar number reporting high anxiety specifically at the point of induction among children ages – years. , special care is taken to assess the environ- ment of the patient, including what is visible. care is taken to ensure that disturbing visuals such as blood, radiograph- ic or intraoperative pictures, and vital signs are not vis- ible. additional pillows and blankets are used to ensure the comfort of the patients and that there is adequate body covering—and are critical especially in adolescent devel- opment for avoiding embarrassment over the exposure of genitalia. once the patient is awake the coping plan is im- plemented as needed while positive emotional reinforce- ment is used to maintain patient compliance. intraopera- tive mapping is tailored to the age and maturity of the pa- tient. for patients most likely to benefit from this protocol, mapping tasks include reading (when possible), speaking, and singing. the ccls remains visible and present until after the readministration of sedation. postoperative phase the postoperative period is critical to ensure that the experience is framed in as positive terms as possible, par- ticularly in cases in which future awake procedures may be indicated. a dedicated time for “debriefing” in order to process the experience is necessary to ensure that patients have an opportunity to express their feelings from the sur- gery and related to having successfully (or unsuccessfully) complied with the awake portion of the case. open-ended questions pertaining to their anxieties preoperatively, their discomfort and perceptions postoperatively, and their ex- periences intraoperatively are asked with ample pauses to allow for free association by the patient. in the case that the patient has limited verbal capabilities to express them- selves, nonverbal methods of self-expression can be used. nonverbal methods can include play, writing, art, music, etc. patient experiences should be validated and any at- tempt at awake craniotomy should receive aggressive posi- tive reinforcement by the entire medical staff as well as the ccls. memories are variable in quantity, clarity, and unauthenticated | downloaded / / : am utc mcdowell et al. neurosurg focus volume • february basis in reality. any negative memories not based on real events should be gently addressed, but typically the rec- ollections are positive. any signs of emotional trauma or depression should be identified and addressed by an ap- propriate provider, although this has not yet been routinely the case. standard posttraumatic stress disorder questions should be inserted into the flow of conversation without being obvious, if possible, in order to avoid feelings of self- consciousness. these questions relate to disturbing en- counters, feelings of stress when reminded of the past ex- perience, avoidance of situations or activities that remind the patient of the past experience, feelings of dissociation or irritation, and difficulty with concentration. clinical experience to date, patients have undergone surgery using the tar- geted approach described above, with both having surgery successfully completed as planned and recovering without permanent neurological deficit. one patient reported posi- tive experiences in the perioperative period and the other reported having no clear recollection of the experience. neither patient demonstrated evidence of posttraumatic stress disorder. however, both cases have been performed in only the last few months and thus long-term outcomes remain to be studied. one patient had no complications and the other suffered an intraoperative seizure at the time of closure. this case is described as follows. this is a -year-old girl with li-fraumeni syndrome and an incidental nonenhancing intrinsic lesion of the left frontal lobe (fig. ). the patient was asymptomatic at the time of presentation except for a history of a febrile seizure at the age of years. she was offered an awake left crani- otomy using the child life protocol. using image guidance after sedation, local anesthetic, and pinning, a left frontal craniotomy was performed via a linear hemicoronal inci- sion. the patient was awakened without difficulty and the tumor was removed using cortical stimulation mapping, which the patient was able to perform easily with the sup- port of a ccls. at the end of the resection, the patient suffered a tonic-clonic seizure requiring intubation. an intraoperative mri sequence was obtained (fig. ) con- firming tumor removal, and the wound was closed in stan- dard fashion. pathology was consistent with a low-grade glioma. postoperatively the patient demonstrated some transient speech delay but no other focal deficits. the pa- tient did not recall the procedure or perioperative events. discussion we demonstrate in this technical report our center’s development and implementation of a child life protocol to decrease stress and increase compliance for pediatric awake craniotomy patients. through careful psychological buttressing with this child life–driven protocol, we pro- pose to increase pediatric awake craniotomy compliance and, potentially, outcomes. adult series have been pre- dominantly favorable, with enhanced outcomes in terms of neurological preservation, survival benefit, and greater tumor resection frequently being cited. , , of cases in which patients underwent awake neuro- surgical procedures that were reviewed by lohkamp et al., all but cases were age years or older and the young- est documented children were years old. most reported cases of awake craniotomy in pediatric patients have been in adolescents, with a median age of years. fifty-two percent of cases were craniotomies for lesion within elo- quent areas, % were for epilepsy surgery, and % were for deep brain stimulation. age variances between these categories were not assessed, but anecdotally an -year-old patient tolerated the awake process, in contrast to a -year- old patient who did not, suggesting that the magnitude of the surgery may not be so limiting as the psychology of the individual as well as possibly the preoperative condition- ing conducted. , inability to tolerate the awake phase of fig. . axial (left) and sagittal (right) preoperative flair mri se- quences demonstrating a nonenhancing intrinsic lesion. fig. . diagram depicting the phases of ccls-driven patient support for awake craniotomy cases. or = operating room. unauthenticated | downloaded / / : am utc mcdowell et al. neurosurg focus volume • february the craniotomy is the cause of half of discontinuations. in total, of patients undergoing lesional resection or epi- lepsy surgery ( . %) suffered permanent new neurological deficits postoperatively. in extremely young patients awake craniotomy may not be a reasonable option given the low likelihood of com- pliance. for this reason, some have advocated for extra- operative mapping with invasive electrodes (e.g., subdural grids). others have argued that awake craniotomies may be unnecessary given the concordance between cortical stimulation results and extraoperative stimulation map- ping. however, much of the literature suggests that pas- sive mapping methodologies are sensitive, but lack the specificity of cortical stimulation mapping. the speci- ficity of passive mapping modalities may be further de- creased in the pediatric population given developmental changes in cortical language maps. , , , , therefore, the specificity of cortical stimulation mapping over passive mapping techniques may increase the amount of tumor (or other lesion) that can be safely resected. given the risks of extraoperative mapping with invasive electrodes, pediat- ric awake craniotomy may be a relatively low-risk method for localizing eloquent cortex to maximize safe resection, and comes with the benefits of not requiring multiple pro- cedures and potentially decreased morbidity from lead placement. , , , although not reported to date, there exist concerns related to long-term psychological trauma in addition to intraoperative compliance. conditioning patients preop- eratively as well as reinforcing the positive nature of suc- cessful tolerance of the protocol may reduce the likelihood of posttraumatic stress through the enhancement of patient resilience. in a study of pediatric patients considered for awake craniotomy, riquin et al. found that all were eligible. two of the patients had a high level of preop- erative anxiety on neuropsychological assessment, but nonetheless tolerated the procedure well with appropriate conditioning. cclss are an essential part of the multidisciplinary team in pediatric hospitals. their jobs entail meeting the patient and his or her family’s psychosocial needs. a ccls has a strong background in child development and takes courses related to meeting specific needs in a pedi- atric setting, i.e., the hospitalized child, child development, death and bereavement, working with children with spe- cial needs, play, medical terminology, family systems, and many more. beyond the course requirements to become a ccls, one must have a minimum of a bachelor’s degree, hours of clinical experience, and must pass the child life professional accreditation examination. these are the requirements set by the association of child life profes- sionals. cclss are the staff that can prepare for and ex- plain the hospital experience to children in an age- and developmentally appropriate way. a ccls’s role is to address the psychosocial needs of both patients and fami- lies. these needs include emotional support, preparation for surgery and other procedures, and both identifying and facilitating coping strategies that are age and developmen- tally appropriate. for patients who are undergoing awake craniotomies, we believe that a standardized process establishes a non- threatening advocate to promote vocalization of the needs, frustrations, concerns, and questions that both patients and families may have but may not wish to directly address with the treating providers. the child life service provides a longitudinal, in-house outlet for patients to work through their emotions both before and after surgery, and the in- volvement of a child life specialist ensures that a friendly and familiar face is always present during the awake por- tions of surgery. each patient’s coping plan is developed with the patient and family in conjunction with their as- signed ccls. this plan is individualized to meet the specific needs and interests of each patient and includes components directed at the preoperative, intraoperative, and postoperative periods. common requests include ded- icated conversation time, choosing music for the operating room as well as the patient’s room, pet therapy, and having favorite books on hand for reading. future directions having demonstrated the feasibility of the protocol in early patients, we will seek to prospectively validate the generalizability and success of ccls-supported awake craniotomies in pediatric patients. patients eligible for awake craniotomy will be approached for enrollment. compliance will be tracked in addition to postoperative outcomes and patient perceptions of the experience. those who do not elect to have an awake craniotomy will serve as a control group. references . arya r, wilson ja, fujiwara h, vannest j, byars aw, rozh- kov l, et al: electrocorticographic high-gamma modulation with passive listening paradigm for pediatric extraoperative language mapping. epilepsia : – , . aungaroon g, zea vera a, horn ps, byars aw, greiner hm, tenney jr, et al: after-discharges and seizures during pedi- atric extra-operative electrical cortical stimulation functional brain mapping: incidence, thresholds, and determinants. clin neurophysiol : – , . balogun ja, khan oh, taylor m, dirks p, der t, snead iii oc, et al: pediatric awake craniotomy and intra-operative stimulation mapping. j clin neurosci : – , . boetto j, bertram l, moulinié g, herbet g, moritz-gasser s, duffau h: low rate of intraoperative seizures during awake craniotomy in a prospective cohort with supratentorial fig. . axial (left) and sagittal (right) postoperative flair mri se- quences demonstrating complete resection. unauthenticated | downloaded / / : am utc mcdowell et al. neurosurg focus volume • february brain lesions: electrocorticography is not mandatory. world neurosurg : – , . boles j: preparing children and families for procedures or surgery. pediatr nurs : – , . brewer s, gleditsch sl, syblik d, tietjens me, vacik hw: pediatric anxiety: child life intervention in day surgery. j pediatr nurs : – , . chou n, serafini s, muh cr: cortical language areas and plasticity in pediatric patients with epilepsy: a review. pedi- atr neurol : – , . davidson aj, shrivastava pp, jamsen k, huang gh, czar- necki c, gibson ma, et al: risk factors for anxiety at induc- tion of anesthesia in children: a prospective cohort study. paediatr anaesth : – , . devous md sr, altuna d, furl n, cooper w, gabbert g, ngai wt, et al: maturation of speech and language func- tional neuroanatomy in pediatric normal controls. j speech lang hear res : – , . hervey-jumper sl, li j, lau d, molinaro am, perry dw, meng l, et al: awake craniotomy to maximize glioma resec- tion: methods and technical nuances over a -year period. j neurosurg : – , . hyslop a, duchowny m: electrical stimulation mapping in children. seizure [epub ahead of print], . jain p, whitney r, strantzas s, mccoy b, ochi a, otsubo h, et al: intra-operative cortical motor mapping using subdural grid electrodes in children undergoing epilepsy surgery eval- uation and comparison with the conventional extra-operative motor mapping. clin neurophysiol : – , . kain zn, caldwell-andrews a, wang sm: psychological preparation of the parent and pediatric surgical patient. an- esthesiol clin north america : – , . klimek m, verbrugge sj, roubos s, van der most e, vincent aj, klein j: awake craniotomy for glioblastoma in a -year- old child. anaesthesia : – , . lerwick jl: psychosocial implications of pediatric surgical hospitalization. semin pediatr surg : – , . lohkamp ln, mottolese c, szathmari a, huguet l, beuriat pa, christofori i, et al: awake brain surgery in children-re- view of the literature and state-of-the-art. childs nerv syst : – , . miller kj, abel tj, hebb ao, ojemann jg: rapid online language mapping with electrocorticography. j neurosurg pediatr : – , . papanicolaou ac, rezaie r, narayana s, choudhri af, wheless jw, castillo em, et al: is it time to replace the wada test and put awake craniotomy to sleep? epilepsia : – , . riquin e, dinomais m, malka j, lehousse t, duverger p, menei p, et al: psychiatric and psychologic impact of surgery while awake in children for resection of brain tumors. world neurosurg : – , . sanai n, mirzadeh z, berger ms: functional outcome af- ter language mapping for glioma resection. n engl j med : – , . serletis d, bernstein m: prospective study of awake crani- otomy used routinely and nonselectively for supratentorial tumors. j neurosurg : – , . vyas kj, fesperman sf, nebeker bj, gerard sk, boyd nd, delaney em, et al: preventing ptsd and depression and reducing health care costs in the military: a call for building resilience among service members. mil med : – , . wahab ss, grundy pl, weidmann c: patient experience and satisfaction with awake craniotomy for brain tumours. br j neurosurg : – , . westmacott r, mcandrews mp, deveber g: language rep- resentation following left mca stroke in children and adults: an fmri study. can j neurol sci : – , . yan h, katz js, anderson m, mansouri a, remick m, ibra- him gm, et al: method of invasive monitoring in epilepsy surgery and seizure freedom and morbidity: a systematic review. epilepsia : – , disclosures dr. abel is a consultant with monteris. author contributions conception and design: all authors. acquisition of data: all authors. analysis and interpretation of data: all authors. drafting the article: all authors. critically revising the article: all authors. reviewed submitted version of manuscript: all authors. administrative/technical/material support: abel. correspondence taylor j. abel: university of pittsburgh medical center, pittsburgh, pa. abeltj@upmc.edu. unauthenticated | downloaded / / : am utc wp-p m- .ebi.ac.uk params is empty sys_ 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specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ complementary therapy improves the patient experience in a group receiving intensive chemotherapy for haematological malignancies a pilot study wendy risdon a thesis submitted in partial fulfilment for the degree of master of health sciences university of canterbury, christchurch october i dedication to joan tarbotton who died in with acute myeloid leukaemia (aml). she was my guiding light. i miss our talks, i miss her guidance and her wisdom even though i didn’t always like what she had to say. joan was a nurse and a midwife, a dedicated mother of five children, a loving and humorous wife to lester and a devoted grandmother to her grandchildren. joan would no doubt be delighted to see her five great-grandchildren now roaming the earth. this special woman was my mother and a role model of loving kindness. at the time of her diagnosis in , my parents had just retired from farming in the mid- canterbury foothills. they made the most of the next seven short years while mum spent periods of time in the south island bone marrow transplant unit where this study was conducted eleven years later. during this time she kept a diary which dad shared with me after her death and i feel very privileged to have been able to read her thoughts about living with aml. dad maintains an unshakeable faith in god and continues to be my role model for resilience and quiet determination. my mother loved life, she enjoyed hearing about nursing in today’s world and i never forgot her words when i was training, “i hope you are a kind nurse that is the most important thing, it’s what you do not what you say that matters most.” i didn’t know it then but now i understand how integrating “healing touch” into my nursing practice has become the greatest way to demonstrate loving kindness in action. in a world where people are starving for human touch and connection this is a free yet priceless gift. may god bless all those who choose to walk the “healing touch” road and may their light never be extinguished. ii acknowledgements firstly, a sincere thank you to my supervisors kate reid and professor ray kirk, to whom i am so very grateful. your genuine interest, support and wise guidance has been instrumental in getting me to this place of completion. i am sure you will be as delighted as i am to have reached this point. i could not have achieved this without the brave bmtu patients who while travelling their own lonely road were still prepared to be part of this study. they generously shared a part of themselves while being open to receiving something unknown in the process. thank you from the bottom of my heart to each healing touch practitioner who carried out the interventions and gave of themselves and their time to further the vision of bringing “healing touch” into mainstream health care. deb, gwyneth, sharon, karen, jane, pauline and ian, your support and shared vision is part of something bigger taking place in the world of health and healing. deb carter, you were invaluable in the planning stage and thought of things i hadn’t contemplated when it came to delivering healing touch in a hospital setting. deb created guidelines which can now be replicated in any health setting in the country. to annis parker my very first healing touch instructor, teacher and role model to people all over the world, , you are an ageless inspiration. to wendy jar, clinical nurse specialist in the bmtu and dr emma-jane mcdonald, haematologist, you had the vision to provide new options for supportive care to your patient’s. without you both this opportunity would never have presented itself. thank you for arranging funding and for believing in me but reigning me in when i got over enthusiastic about what could be delivered and measured. iii to sarah my precious daughter who once asked me if i minded that she was not planning to be a nurse. your computer skills and professional recommendations for the initial project proposal were invaluable and have served to progress touch therapies in nursing by default. to my sons, tom and chris, you too have been as supportive especially as teenagers allowing me to “practice” ht techniques on you provided you could listen to your own music. dan court-patience, you rescued me from the chaos of my crazy filing system, with copies of copies because i was so afraid of losing something. your expert knowledge of “excel” saved me hours of time formatting graphs, thank you, it was worth more cakes than i could have ever baked for you. i wish you well in your phd journey and for life beyond it. i also wish to acknowledge the pivotal role dr joan allardyce, (medical director of canterbury university health centre) played in this master’s thesis. as my “boss” for the last years she signed off funding and supported my work along the way with the establishment of a dedicated “healing touch clinic” at the university health centre since . this would not have happened without dr allardyce’s vision and belief in me. my nursing colleagues have also been living this never ending story with me every step of the way. thank you for caring for me and supporting the continuation of this work and picking up the slack when i needed time off. you have all been an example of loving kindness in action on so many occasions. and now last but certainly not least the words i have been imaging writing as my conclusion. to robbie my long suffering husband, thank you so much for your love and support over the years this work has taken to come to fruition, for giving me the space to do what was necessary to complete this part of my life. you are the best husband i could imagine and a iv great dad and a loving grandad. you have waited patiently for this time to arrive and now i shall tidy up and let’s go sailing! v abstract the bone marrow transplant unit (bmtu) at christchurch hospital, new zealand trialled a new initiative in involving “healing touch therapy” (an energy-based complementary modality), using gentle nurturing touch. aim to evaluate the feasibility and acceptability of delivering healing touch (ht) sessions to patients receiving intensive chemotherapy for haematological malignancies. to improve patient’s health related quality of life with a “hands-on”, gentle touch intervention which requires no energy expenditure on the part of the patient. method ten patients were allocated to a ht practitioner (htp) for the duration of their hospitalisation. ht sessions of - minutes occurred twice weekly. pre/post treatment evaluations were completed by the healing touch practitioner (htp) and a modified functional assessment of cancer therapy- leukaemia (fact-leu), evaluation tool was completed by the patient after each session. nursing staff from the bmtu were also surveyed. results the ht intervention was well received by patients and supported by the nursing staff. patients reported; finding the sessions helpful overall, creating a state of relaxation, reduced anxiety, pain and muscle tension. a total of ht sessions were delivered during the four month pilot project with complete evaluation sets. eighty two percent of patients, found the sessions very helpful” or “quite a bit helpful” and % found them, “somewhat” or “a vi little bit” helpful. the data showed an increasing benefit over time, suggesting an accumulative effect took place. conclusion the goal for this pilot study has been met by demonstrating the ability to recruit and retain participants and to receive a high rate of positive qualitative feedback from both patients and staff. this suggests a ht programme is feasible, acceptable and positive. the results have shown that ht can be a positive contributor to wellbeing in the bone marrow transplant unit (bmtu) and that ht therapy could be offered to all patients with minor changes to delivery and funding arrangements. vii table of contents dedication ......................................................................................................................... i acknowledgements .......................................................................................................... ii abstract ........................................................................................................................... v table of contents ........................................................................................................... vii list of tables ................................................................................................................... xi list of figures ................................................................................................................. xii chapter one introduction ................................................................................................. thesis outline ......................................................................................................................... prologue ................................................................................................................................. a definition of healing touch ................................................................................................ the history of energy medicine ............................................................................................. the founder of healing touch ........................................................................................... nursing and healing touch go hand in hand ...................................................................... the relaxation response ..................................................................................................... other ways ht may influence health and wellbeing. .......................................................... touch .................................................................................................................................... eco psychology ..................................................................................................................... healing presence .................................................................................................................. support for a multidimensional and integrative model of healing worldwide .................. conclusion ............................................................................................................................ research questions (rq) and hypotheses (hy) .................................................................... chapter two ................................................................................................................... leukaemia ............................................................................................................................ the bone marrow transplant unit in christchurch hospital in .................................. gaps in research knowledge about healing touch bio-field therapy .................................. summary .............................................................................................................................. chapter three literature review .................................................................................... methods ............................................................................................................................... levels of evidence ............................................................................................................. conditions and populations ................................................................................................. cardiovascular disease ......................................................................................................... noetic therapies and cardiovascular disease ..................................................................... viii stress, anxiety and depressed mood .................................................................................. cancer care .......................................................................................................................... psychological and emotional wellbeing .............................................................................. improvement in well-being and longer term quality of life. ............................................... symptom management ....................................................................................................... pain in specific conditions ................................................................................................... pain and children ................................................................................................................. studies using sham or mock ht treatments. ...................................................................... studies using active comparators verse ht ........................................................................ research changes over time ............................................................................................... programme evaluations (descriptive studies) ..................................................................... healing touch and haematological disorders ..................................................................... stem cell transplant ............................................................... error! bookmark not defined. health related quality of life and supportive care for patients with haematological disorders .............................................................................................................................. some positive and negative results in the literature to date. ............................................. support for touch ................................................................................................................ canada sets an example for the routine use of healing touch. ......................................... gaps identified in the literature ........................................................................................... limitations. ........................................................................................................................... ambiguous results ................................................................................................................ the future ............................................................................................................................. the importance of cam therapies in nursing. ..................................................................... conclusion ............................................................................................................................ chapter four methods and methodology ....................................................................... research questions (rq) and hypotheses (hy) .................................................................... methods ............................................................................................................................... methodological position ...................................................................................................... setting .................................................................................................................................. documenting sessions ......................................................................................................... study participants ................................................................................................................ practitioner training and experience ................................................................................... intervention and materials .................................................................................................. developing the role of the healing touch practitioner in the bmtu ................................. ix measurement instruments-validity and reliability ............................................................. key dates and the timeline leading up to the commencement of the pilot project. .......... sample sessions for staff ..................................................................................................... data analysis ........................................................................................................................ conclusion ............................................................................................................................ chapter five results ....................................................................................................... instrument one ................................................................................................................. instrument two ................................................................................................................. instrument three .............................................................................................................. what does this result mean for the three research questions? .......................................... healing touch techniques utilised by practitioners ........................................................... comments/feedback from the patient group ................................................................... responses grouped by theme. ....................................................................................... staff feedback ................................................................................................................ summary ............................................................................................................................ chapter six discussion and conclusion .......................................................................... specific techniques ............................................................................................................. statistical analysis............................................................................................................... strengths and limitations .................................................................................................. confounding variables ................................................................................................... recommendations for future research .............................................................................. conclusion .......................................................................................................................... special acknowledgement.............................................................................................. references ................................................................................................................... appendices .................................................................................................................. appendix a information pack, consent form, information for participants ..................... appendix b initial intake interview form ........................................................................... appendix c consort flow diagram ..................................................................................... appendix d healing touch session documentation .......................................................... appendix e patient post treatment questionnaire/ modified fact leu, qol ................. appendix f programme evaluation for ward staff. questionnaire results ...................... appendix g professional protocol for healing touch practitioners working in the bone marrow transplant unit and “aon” indemnity insurance, application for non-nurses .. appendix h code of ethics/standards of practice for healing touch practitioners .......... x appendix i techniques used by ht practitioners – ........................................................... appendix j te komiti whakariti /māori consultation letter ............................................. appendix k university of canterbury ethics committee approval .................................... appendix l canterbury district health board general manager sign-off ......................... appendix m visiting health professionals agreement ...................................................... xi list of tables table . summary of outcome measures ................................................................................ table . paired sample statistics .............................................................................................. table . choice of healing touch technique ......................................................................... xii list of figures figure . the seven hierarchical levels of evidence ................................................................ figure effect of healing touch session averaged ................................................................. figure effect of healing touch session averaged ................................................................. figure effect of healing touch session averaged ................................................................. figure effect of healing touch session averaged ................................................................. figure effect of healing touch session averaged ................................................................. figure effect of healing touch session averaged ................................................................. figure : q . overall i have found these sessions helpful ....................................................... figure : q . was the most recent healing touch session ................................................... figure : an example of helpfulness rating using patient a’s data. ...................................... figure was the practitioner responsive to your needs? .................................................... figure modified functional assessment of cancer therapy-leu (fact-leu) ..................... figure i am sleeping well ..................................................................................................... figure i am satisfied with how i am coping with my illness ............................................... figure i have a lack of energy ............................................................................................. figure i feel sick ................................................................................................................... figure i have pain ................................................................................................................ figure i am bothered by side effects of treatment ............................................................ figure i feel ill ...................................................................................................................... figure i feel anxious ............................................................................................................ figure overall i have found these sessions helpful ............................................................ figure length healing touch session .................................................................................. chapter one introduction australia and new zealand have the highest rates of leukaemia in the world (franki, ). no other country has a higher incidence than these neighbouring countries. the reason behind this statistic warrants investigation. research into the cause of haematological disorders such as leukaemia is important but so too is the need to find safe, cost effective and acceptable ways to address the human element involved in delivering nursing care, technical medical treatment and supportive care to patients and their families. leukaemia has a higher incidence in males than females and in the rate in men was estimated to be . per , and in women it was . per , (leukaemia new zealand, ). new zealand is estimated to have , people living with a blood cancer such as leukaemia, myeloma or lymphoma at any given time (leukaemia new zealand, ). haematological diseases strike indiscriminately and patients become acutely unwell over the course of days or weeks. this disease can occur at any age and has a sudden and dramatic impact on a person’s life. it is the fifth most common form of cancer in new zealand and the most common cancer in children. https://www.leukaemia.org.nz/information/about-blood-cancers/ leukaemia is a considerable burden on families and on the health system because it is the most costly cancer to treat at an average cost of $ , per case (blakely, ). thesis outline the introduction situates the researcher’s interest in the field of holistic nursing and explains how a master’s research thesis evolved from a simple suggestion, to provide “healing touch” treatments to a group of haematology patients. chapter one then offers a definition of the healing touch modality and outlines the historical roots and possible modes of action. https://www.leukaemia.org.nz/information/about-blood-cancers/ chapter two begins to discuss gaps in the literature surrounding leukaemia and healing touch and presents the research questions and hypotheses to be examined throughout the rest of the thesis. chapter three reviews the literature and examines the way other researchers have approached the topic and added their knowledge to the growing body of literature. chapter four restates the research questions and describes the methods and methodology utilised to gather data and the rationale behind these decisions. chapter five presents the results of the data generated from three patient focused research instruments and the evaluations gathered. chapter six deals with the discussion generated from the findings and looks at the strengths and limitations of this study along with recommendations for future research in this developing field of science and art. prologue the experience of being a twelve year old patient, in hospital for an appendectomy, ignited my desire to be a nurse. i idolised the nurses as i watched them “nursing”, showing kindness to the patients, and utilising caring skills, as they went about their work. i remember their gentle touch but i cannot remember their names. i wonder where they are today, perhaps retired, even deceased? those nurses will never know the impact they made on my career choice and i may never know the impact i make on patients i care for during my nursing career. people may not remember a name or exactly what was said to them but they do remember how they were made to feel and that is a fundamental role of ht a “hands-on” energy based bio-field therapy. the second life experience that prepared me for this research project was my late mother’s diagnosis and treatment for acute myeloid leukaemia. she spent long periods of time in the bone marrow transplant unit (bmtu) at christchurch hospital between and . i felt an empathetic connection towards these patients and their families. walking through those automatic doors to enter the unit, washing my hands, and passing the nurse’s station on route to see the patient, waiting expectantly in an isolation room felt all too familiar. these patients live in a surreal bubble, divorced by necessity from the rest of the world. here i was in this environment again after eleven years. this time my purpose was to facilitate a research project, aimed at helping someone else’s mother/father or relative to improve their “health related quality of life” (hrqol), using healing touch (ht), a hands-on bio-field therapy, delivered by trained ht practitioners at the patient’s bedside. thirdly, a friend introduced me to energy medicine over years ago, and i started attending training courses until i had completed the pre-requisites to become a certified international healing touch practitioner (chtp) in . in the same year i travelled to america on a university scholarship which enabled me to visit seven hospitals, in six states, to observe the delivery of complementary therapy and integrative care programmes. i was particularly interested in mainstream health care facilities incorporating “healing touch” into their model of patient care. my goal was and still is, to raise awareness within the new zealand health care system about the untapped potential of “touch” as a vital healing force. my goal is also to provide more opportunities for patients to experience bio-field therapies. a connection needs to be made between existing and emerging scientific information in the field of complementary and alternative modalities (cam) and complementary integrative therapies (cits). i present this work, not as a scientist, but as a nurse, a ht practitioner and a member of a community who has a vision to see touch therapies readily available to all who wish to receive them. observing this field of care first hand during my four week visit to america gave me the confidence to offer “healing touch” sessions to a rising number of students presenting with anxiety and depression at the university where i worked as a nurse until very recently. over ten years have passed since this overseas experience and now there is a well-established “healing touch clinic” providing this hands on nursing intervention to students and staff at the university of canterbury health centre. this programme has been acknowledged by the referring general practitioners, nurses and counsellors as a valuable addition to standard care. the “healing touch and relaxation therapy” sessions are offered free of charge for funded and enrolled patients at this practice. a definition of healing touch healing touch bio-field therapy is a gentle complementary energy based approach to health and healing. the goal is to restore harmony and balance to the human energy system through a heart-centred caring relationship with the use of contact and non-contact touch. the practitioner uses his/her hands to deliver gentle touch on or just above a fully clothed body. healing touch influences physical, mental, emotional, and spiritual aspects of healing. some possible effects could include the reduction of pain, anxiety, nausea and a profound sense of relaxation which is often experienced during and following treatment, see the pamphlet in appendix a patient information pack. healing touch is a relaxing, nurturing energy therapy which can positively affect a person’s health and well-being. the focus is on “healing” as opposed to “curing”. curing is seen as an event where the goal is to eliminate or control the symptoms of disease. the body is also viewed like a defective machine healing is a process where everything is understood to be connected and synergistic. when healing takes place it may be on multiple levels and the intention is not simply to eradicate symptoms or disease but the focus is on the patients highest good. the ht practitioner adopts a whole person approach to health and healing that forms the basis of a healing partnership and creates an environment that supports the healing process. ht is a blending of energies between the healer and healee which raises the vibrational frequency of the healee’s body and places it in a better position to self-heal. according to gerber, the healer creates a much needed energetic boast to push the healee’s total energetic system back into homeostasis (gerber, p. ) “the universe does not hear what we are saying. it feels the vibration you are offering.” abraham hicks (https://jennifer .com/blog) one of the most widely used classification structures for complementary and alternative therapies (cam) and complementary integrative therapies (cits), was developed by the national centre for complementary and alternative medicine nccam ( ), https://nccih.nih.gov/ now known as national institutes of health (nih), it divides these modalities into five categories: . alternative medical systems . mind-body interventions, . biologically based treatments, . manipulative and body-based methods . energy therapies. as the name implies, alternative medical systems is a category that refers to an entire system of theory and practice that developed separately from conventional medicine. examples of https://www.ncbi.nlm.nih.gov/books/nbk / https://nccih.nih.gov/ these systems include traditional chinese medicine, ayurveda medicine, homeopathy, and naturopathy. mind-body therapies use a variety of techniques to enhance the mind’s ability to affect body functions and symptoms. examples include; guided imagery, meditation, yoga, biofeedback, music and art therapy, journaling, humour and prayer. biologically based therapies are substances found in nature such as herbs and essential oils, special diets and nutritional supplements. manipulative and body-based therapies involve movement of one or more parts of the body and include chiropractic medicine, osteopathy, massage and bodywork such as feldenkrais and rolfing. the fifth category described by nccam is energy therapies which include the manipulation and application of energy fields within and around the body. in addition to electromagnetic fields outside of the body, it is hypothesized that energy fields exist within the body. the existence of these bio-fields has not been experimentally proven; however, a number of therapies include them, such as qi gong, reiki, and therapeutic touch/ healing touch. (nccam, ) the history of energy medicine nikola tesla is credited with saying; if you want to understand the universe, you need to understand, energy, frequency and vibration https://www.goodreads.com/author/quotes/ .nikola_tesla it would seem there is an increasing amount of scientific research being discovered and re- discovered about the role of electricity and magnetism which surrounds and interpenetrates https://www.goodreads.com/author/quotes/ .nikola_tesla all living things. (oschman, l ( ) documents the historical background of electricity and magnetism producing bio-magnetic fields used in medical diagnosis and treatment. familiar diagnostic tools in use today are; x-ray, gamma ray and infrared rays as well as magnetic resonance imaging (mri), electrocardiograms (ecg) and electroencephalograms (eeg). audiograms utilise sound wave vibrations and thermal imaging utilises infrared radiation. these are examples of pulsing waves being widely used in western medicine. another example is the use of sound waves to destroy kidney stones through the mechanism of harmonic resonance. kidney stones are crystals whose atoms vibrate at a particular frequency so by directing the same harmonic frequency towards the kidney stone it absorbs the energy and vibrates until it literally explodes. this is called constructive interference (lipton, p. ). early works by harold saxton burr between and focused on the development of the nervous system and electrical impulses. this was the era of antibiotic discovery and the use of x-rays to diagnose illness. burr published papers and his colleagues contributed many more to this field of science. he wrote a book called “blueprint for immortality: the electric patterns of life (burr, ) cited in (oschman, p. ). “burr was convinced that the fields of life were the basic blueprints for all living things.” energy fields have been used for healing since ancient times according to oschman, ( ). by the late s, thousands of physicians in the usa and europe were using electricity daily to treat a wide range of ailments. despite this activity mainstream medicine rejected the idea that living matter possesses a 'life force'', known as vitalism’. in , science was formally established as the basis for medicine, and medical schools were overhauled. clinical electrotherapy became illegal in the usa. few academic scientists dared to study the therapeutic potentials of energy fields except burr, a yale professor, who was convinced energy fields were the basic blueprints for all life. burr continued to research methods that supported his belief about every physiological process having an electrical counterpart. burr hypothesised that diseases altered energy fields before pathological changes began (burr & northrop, ). others who concur with this philosophy include; eden & feinstein, ( ), brennan, ( ), zimmerman, ( ), gerber,( ) and becker & gary, ( ). in the early s, the federal drug administration (fda) cautiously began to approve electrical and magnetic devices to stimulate bone repair. this was the beginning of a new era in electromagnetic medicine. according to oschman, ( ), modern research has confirmed the observations of burr and his colleagues. “as a phenomenon, bioenergy fields have gone from scientific “nonsense” to an important and expanding subject of biomedical research. in later chapters we see not only that fields can be detected at a distance from the body, but also that scientists are explaining how these fields are generated, why they become distorted when pathology is present, why living systems are so extraordinarily sensitive to fields, and how fields can be used in healing.” (oschman, p. .) oschman makes a very interesting point at the conclusion of his book by saying, …while scientists were determining that tissues can extract meaningful signals from much higher levels of electromagnetic ‘noise’, engineers were developing sophisticated sensing devices with similar attributes. many of these devices have been sent, at great expense, about as far away from humans as possible, to the outer edges of the solar system, where they record the properties of interstellar wind and other distant celestial phenomena. why have we not turned these elegant sensors toward ourselves, to explore the kinds of energies all of us can emit? research of this kind is of profound medical importance (oschman, p. ). the founder of healing touch janet mentgen, (rn, bsn, chtp/i) ( - ) formally created healing touch in the early ’s as a nursing continuing education programme. her vision was to spread healing light worldwide. while ht is practiced by people from all walks of life and can be self-administered, it was first taught to holistic nurses. mentgen received the american holistic nurse of the year award in . the healing touch certificate programme developed by janet mentgen was administered through the american holistic nurses association (ahna) from - . it was then transferred to healing touch international (hti) inc. and in hti became healing beyond borders (hbb), a non-profit service organisation. hbb has a code of ethics and standards of practice and scope of practice, to ensure safe and ethical practice, see (appendix h). students of ht are taught a standardised curriculum so classes taught anywhere in the world are similar. completion of the five levels of the ht programme takes a minimum of two years and international certification allows the use of the title certified healing touch practitioner (chtp). re-certification takes place every five years after that. eight core concepts are expressed in healing touch; . health and quality of life are affected by the health of the energy system. . all life experiences are recorded and stored in the human energy system. . centring, grounding and attuning are the first steps in facilitating healing. . healing is a sacred process. . self-care is empowering and supports health and healing. . thought is a form of energy and precedes form. . the human energy system is influenced by thoughts, emotions and actions. . the energy of love has a wisdom of its own that calms, relaxes the body and promotes its natural ability to heal. “love one another and help others to rise to the higher levels, simply by pouring out love. love is infectious and the greatest healing energy.” — sai baba (me yousaying.blogspot.com/p/sai-babahtml) accessed / / jean watson, a nursing theorist developed, “human caring science”, a theory which seeks to advance human caring in nursing. watson is a distinguished professor at the university of colorado, and her caring theory makes explicit the values, knowledge and practices not just of nursing but of all the healing arts. (www.watsoncaringscience.org ). jean watson is a strong supporter of ht and has authored or co-authored books on nursing theory and human caring science. watson wrote the foreword in the twentieth anniversary edition of the “healing touch guide book- practicing the art and science of human caring” by dorothea hover-kramer (hover-kramer, ). jean watson upholds healing touch (ht) as an example of an intentional caring-healing modality grounded in ethics, philosophy, values and consciousness consistent with her original theory of human caring and transpersonal caring. (www.watsoncaringscience.org) nursing and healing touch go hand in hand healing beyond borders (hbb) also encourages the integration of ht into mainstream medicine and supports the work in over countries world-wide. “the richness of healing touch is that it lends itself to flowing to and across continents and cultures and maintains its standardisation while it melds with http://www.watsoncaringscience.org/ the flavours of the area it serves…. as it foundation is from ancient sources, healing touch provides a renewal of knowledge into the importance of human touch and interaction” wardell, kagel, & anselme, ( ) evidence based research pertaining to ht and bio-field therapies is increasing rapidly and at the time of writing this chapter (december ) there were registered clinical trials for healing touch recorded with the us national institutes of health (clinicaltrails.gov). according to wesa , healing touch is not purported to directly treat cancer but may decrease side effects associated with cancer or its treatment. it is nurturing, relaxing and pleasant to receive and can provide patients with a sense of control. complementary therapies such as healing touch are rational, evidence-based, safe and cost effective to deliver (wesa k., ) martha rogers ( - ) is another american nursing theorist who has shaped modern day nursing. roger’s created the “science of unitary human beings”, a theory which viewed nursing as both a science and an art. she theorized that the purpose of nurses was to promote the health and well-being of all people wherever they are. perhaps the most well-known nurse in history is florence nightingale ( - ). a british nurse in the crimean war, she is credited as the founder of modern day nursing. she provided education on hygiene, especially hand washing and created strict sanitation rules which reduced the mortality rate of wounded soldiers in the crimean war from . percent down to two percent in a matter of months (mancini, ). international nurses day commemorates her birthday on may th each year. nursing was not a respected profession in the ’s and because of poor wages it was generally associated with alcoholism, low social status and prostitution to make ends meet. today nurses’ are valued members of society and well respected healthcare professionals. the word “nurse” is both a noun and a verb. it is derived from the word “nurture” which can be defined as educating, nourishing and raising (mckivergren, ) “nursing” also stands as a metaphor for caring-healing, wholeness, and connection with inner processes beyond treating the physical body alone (watson ). florence nightingale ( ) states, the care of the body can never be separate from care of the soul. healing touch is focused on helping to put the patient in the best possible condition so nature can heal. healing can be likened to planting a garden; we don’t make the flowers grow, we simply prepare the soil and plant the seeds. all healing is self-healing meaning the body has an innate ability to heal itself but various medicines or procedures can change the environment and enhance the process. no practitioner creates healing, instead the practitioner’s role is to facilitate a peaceful environment so healing can occur at whatever level is possible for the individual. this means that practitioner’s know how to use themselves as a therapeutic agent who gives unconditional love to the best of their ability (hover-kramer, p. ) healing is a process; one that involves the recognition of wholeness, and steadfast refusal to allow ourselves to be fragmented, even when we are terrified, or broken apart by life. ultimately, healing is a coming to terms with things as they are, rather than struggling to force them to be as they once were, or as we would like them to be to feel secure, or to have what we sometimes think as our own way (kabat-zinn, ) the technological advancements in nursing over the last decade, have reduced the opportunity for human to human and hands-on contact, during nursing interactions. the result is fewer caring moments between nurse and patient. there is a machine to measure and monitor almost every bodily function and the machine distracts the nurse from patient focused interaction. nursing has always encompassed the moral ideal of human caring, and according to watson it consists of, transpersonal human to human attempts to protect, enhance, and preserve humanity and human dignity and wholeness by helping a person find meaning in illness, suffering, pain and existence and to help another gain self-knowledge, self-control, self-caring and self-healing wherein a sense of inner harmony is restored regardless of the external circumstances (watson, p. ) here lies the important difference between healing and curing. it is through healing, that a person moves to “be-in-right relationship with self/other and the wider universe. healing touch practitioners are taught to set an intention or healing goal, at the beginning of each ht session, for the client’s “highest good” and then to let go of any attachment to the outcome. this allows the healing process to be whatever is most appropriate in that moment in time. some people may experience a pleasant relaxing sensation while others may experience an emotional release, a profound insight or an improvement in mind/body/spirit health. animals, plants and biological substances are also purported to have energy fields and have been shown to respond to bio-field energy healing techniques (jana, ). experiments in this field, are not included in this pilot study, except to say some have been shown to rule out the placebo effect (jana, ). the science of epigenetics also demonstrates ways that every cell in the body has the potential to be affected by thoughts and those thoughts create biochemical changes in the brain which explains how the mind and body link is created. healing touch raises awareness about the mind/body/spirit responses to thought which precedes reality (lipton, ). the relaxation response there are many different healing practices and breathing techniques which elicit the body’s relaxation response. the relaxation response can be observed occurring in a person during a ht session. it is often noticed as a deep sigh or a change in breathing pattern. breathing awareness and rhythm is the gateway to many relaxation techniques such as; focused breathing, meditation, guided imagery, hypnosis, yoga and tai chi. according to (zelano, ) inhalation synchronizes brain oscillations across the limbic system which is responsible for emotion, memory and behaviour. scientists first discovered these differences in brain activity while studying seven patients with epilepsy who were scheduled for brain surgery. a week prior to surgery, an electrode was implanted into patients' brains to identify the origin of their seizures. scientists acquired electro-physiological data directly from their brains. the recorded electrical signals showed brain activity fluctuated with breathing. this activity occurred in areas of the brain where emotions, memory and smell are processed (zelano, ). when the practitioner notices this relaxation response, they are aware the client/patient has entered into an alpha brain wave pattern of - hertz (hz) which relates to being deeply relaxed in a state between wake and sleep. brainwave speed is measured in hertz (cycles per second) and is divided into bands of slow, moderate, and fast waves. alpha brainwaves are dominant during quiet flowing thoughts and meditative states. alpha is ‘the power of now’ and being in the present moment. alpha is the state sought by those practicing the technique of “mindfulness”. alpha is a resting state for the brain and allows mental coordination, calmness, clarity and alertness. this assists mind/body integration and the ability to learn. https://www.brainworksneurotherapy.com/contacts’. this state is most beneficial to support the body to self-heal. just as there is a relaxation response, there is also a stress response (oschman, ). psychological stress such as was documented in a recent study by (shah et al., ) in patients with sickle cell disease could cause the same stress as having a chronic, life threatening illness such as leukaemia. the impact on the autonomic nervous system reduces blood flow due to vasoconstriction. slow breathing with attention on the heart is a potent activator of the parasympathetic branch of the autonomic nervous system (ans) which counteracts the stress response. this is taught as a quick coherence technique by the heartmath programme (heartmath institute, n.d.). a slow breathing technique deactivates the release of stress hormones such as epinephrine and norepinephrine and interrupts the fight or flight response to activate the rest and digest response instead. clearing stress hormones creates a mental shift and brings about a sense of calmness. ht utilises this body state by teaching practitioner preparation and the delivery of standardised techniques which induce relaxation or quiet the ans. ht can be easily taught to anybody who is interested to learn. ht is not restricted to delivery by nurses. one of the barriers nurses trained in healing touch report, is the demands on their time does not allow them to spend as much “hands-on” quality time with patients as they would like (frisch, ). engebretson ( ) writes about the metaphor of “hands-on” which has been used throughout the history of nursing, and reflects on the concept of patient-centred care. some nurses have moved from holistic care of the patient to holistic use of self as healer. unifying https://www.brainworksneurotherapy.com/contacts the heart, head and hands; and working in harmony with nature is exemplified in healers using therapies such as ht, therapeutic touch (tt) and reiki. head and heart unite with the action of the hands with the intent to heal. (engebretson, p. ) other ways ht may influence health and wellbeing. modern science now teaches the concept of the heart being much more than a muscle pumping blood around the body. eastern philosophies have long held a wider view of the heart’s role in the body. in the ’s and ’s, researchers’ john and beatrice lacey found the heart was able to “talk” to the brain and this was the beginning of two decades of work which formed the basis of a new understanding about the role of the heart and how people perceive and react to the world they live in. in the last twenty years new discoveries by researchers such as shaffer, mccraty, and zerr ( ) and also lipton ( ), have been referred to as the “new biology”. these key discoveries relate to the field of ht and show how the heart communicates with the brain and the body in four unique ways.  firstly a pulse wave ripples throughout the body with each heartbeat, causing a tiny vibration in every cell of the body and this is referred to as biophysical communication.  secondly, a sophisticated nervous system containing a network of about , neurons, gives the heart an ability to sense and process information from the environment, facilitating neurological communication.  thirdly, the heart processes a biochemical communication pathway secreting hormones. in the heart was reclassified as an endocrine gland when it was discovered to produce a hormone called atrial natriuretic factor (anf).  fourthly, the heart communicates energetically, it possesses an electromagnetic field that can be measured on the body and - metres away. an electrocardiogram (ecg), measures the heart’s electromagnetic field and an electroencephalogram (eeg) measures the brain’s electromagnetic field. this shows measurable activity taking place in real time and a synchronization takes place between the brain and the heart when the body is brought into a state of coherence. when the heart and the brain are in full coherence, the body responds in amazing ways according to literature from the heartmath institute. (heartmath institute, n.d.) in summary, the heart communicates with the body in four ways: neurological communication (nervous system), biochemical communication (hormones), biophysical communication (pulse waves) and energetic communication (electromagnetic fields) (mccraty, p. ) this finding supports one of the ways in which healing touch could influence the state of the body through contact and non-contact touch between practitioner and client. rollin mccraty, ph.d., director of research at the “heartmath institute”, demonstrated how the heart and the brain possess an ability to communicate within the body but even more significant is the fact that they communicate between people and between animals and people (mccraty et al., ). his research showed, when two people hold hands there is a synchronization that takes place called “entrainment” and this is seen when the brain wave pattern from one person shows up in the heart rate recording of the other person which was seen in “real time”. (mccraty, atkinson, & tiller, ) giving ht is a form of communication, in which the hands do the talking. presuming the heart communicates with the body in the four ways mentioned above, and the brain communicates with the body via the heart (and the senses), it seems logical to assume the human hand would also possess the ability to connect energetically and physically to modulate cellular activity in and around the body. touch the pioneering work of dr tiffany field began in the ’s and found simple touch could stimulate the growth and development of pre-term infants. in field established the touch research institute and carried out many studies demonstrating strong evidence in support of the positive effects of touch throughout the human lifespan. dr tiffany field focused her early research on the benefit of touch with premature babies who were gently stroked three times a day. the results showed these babies gained more weight and left hospital sooner than their counterparts receiving standard care and therefore less touch. (scafidi & field, ). this touch therapy for babies involves direct skin to skin contact so it is important not to confuse ht with massage. the recipient of ht is fully clothed but may receive techniques that involve massage to both hands and feet. generally ht is performed over top of clothes and a blanket covering the client or patient. touch stimulates changes in the body, physically, emotionally and spiritually. previous studies in the area of energy healing suggest healing modalities have efficacy in reducing anxiety; improving muscle relaxation; aiding in stress reduction, relaxation, and creating a sense of well-being; promoting wound healing; and reducing pain. (engebretson & wardell, ) "touch seems to have analgesic potential without the risk of side-effects." slater ( ) found the optimal pain-reducing stroking speed was about three centimetres per second. observations suggest parents intuitively stroke their babies at this rate and that speed of stroking activates a class of sensory neurons in the skin called c-tactile afferents (nerve cells), which are known to reduce pain in adults. eco psychology eco psychology is a new field of western science which studies the relationship between man and the natural world. warren grossman is an orthopaedic surgeon who attributes some of our daily stress to the disconnection from the earth https://warrengrossman.com the mental and physical benefits of being in natural environments are being recommended by doctors around the world. man’s electromagnetic link with the earth through his feet is verifiable (stevens, ). this earth connection is referred to as “grounding”. in ht it is taught as an important first step in healer preparation preceding each ht session. healing presence osterman ( ) talks about two dimensions of presence: the physical state of “being there” and the psychological state of “being present with” which relates to a mind to mind connection. presence is “being there” but the quality of “being there” is explained by the “presence framework” of osterman and schwartz-barcotti (osterman, ) “authentic presence in a given moment between persons captures the human to human spirit to spirit connection, which is experientially felt but may not be detected by an outside objective observer.” jean watson https://warrengrossman.com/ support for a multidimensional and integrative model of healing worldwide the quantum university curriculum encompasses a reinvention of integrative medicine to introduce the name, pro-consciousness medicine. it states, “the knowledge of the subtle energy body and its effect on the human body must be added to the current model and teachings of human anatomy.” https://quantumuniversity.com quantum university teaches medical professionals to reinvent the client practitioner relationship and realize how each patient can participate in their own healing. the intention here is to broaden the use of healing modalities that are based on these new scientific discoveries that understand quantum entanglement and the field of consciousness. this will restore the balance between the doctor and patient, empowering the patient to understand the role they play in their own healing instead of focusing on treatment for the symptoms they are experiencing. “pro-consciousness medicine will implement an integrative vision that transforms medicine into something better and greater through a deeper understanding of the role human consciousness plays in the human body and overall health and well-being.” (https://quantumuniversity.com) body mind and spirit come into balance and harmony when consciousness and emotions serve as the door into the physical being. how a person perceives and responds in a given situation depends on past experience and emotions which are attached to that experience. a pre-summit policy roundtable report by the european congress for integrative medicine (ecim) global summit on integrative medicine and healthcare held in september in copenhagen, called for strategic policies in support of integrated health care that would include a vision for setting up “an integrative medicine (im) department in at least one hospital in every european country. globally there is a strong need to tackle issues related to https://quantumuniversity.com/ https://quantumuniversity.com/ health systems, efficiency of health care and the rising cost of health care delivery throughout the world. the constant increase of health system expenditure is not synchronized with the quality of health care. also, there is a rich data base of knowledge and research; positive results are available but little of it is in use. cooperation is required, among all stakeholders for each country, in order to establish policies implement changes towards better efficiency, coverage and costs ostojić & saxer, ( ). conclusion chapter one explains how this research project evolved and the relevance of the researcher’s life experience as a nurse and ht practitioner. it also provides a definition of ht and credits janet mentgen as the founder of this modern day healing modality. a frequently used framework from the nih showed where ht fits in comparison with other complementary and alternative therapies. chapter one also talks about the scientific basis for energy medicine and research by harold saxton burr from as far back as and how the growing body of scientific knowledge may explain possible mechanisms of action for ht. chapter one finishes by suggesting there is global support for integrative and complementary medicine in an effort to provide safe, cost effective supportive care for patients. the research questions and hypothesis follow, to give some context to the information presented in chapter two and then the literature review in chapter three. research questions (rq) and hypotheses (hy) rq : is ht feasible to deliver and acceptable to receive by patients hospitalised with haematological disorders? hy : supportive care in the form of a hands-on complementary modality improves the patient’s subjective well-being measures. rq : is the patient experience of receiving ht measurable, pleasurable and positive? hy : certain patient conditions or patient groups respond in a positive way to ht therapy. rq : what is the optimal effect of repeated ht treatments on patients improved sense of well- being? hy : there is sustained and accumulative effects from repeated ht treatments that persist into the next day chapter two chapter two will talk about a diagnosis of leukaemia, a haematological disorder and the prevalence in new zealand and world-wide. the bone marrow transplant unit (bmtu) will be described and the rationale for patient placement and management here. an explanation of the ht intervention and the research questions being asked are also presented in this chapter. leukaemia leukaemia is the name given to a group of cancers that develop in the bone marrow. according to the leukaemia & blood cancer nz website, (leukaemia new zealand, ) six children and adults in nz are diagnosed every day with a blood cancer such as leukaemia, lymphoma or myeloma and , people in nz are living with the condition. it is the most common childhood cancer and fifth most common cancer in new zealand. cases worldwide are increasing (miladinia, ( ). a diagnosis of blood cancer can have far-reaching consequences. it can strike anyone, at any age without warning and immediate medical treatment is necessary and may go on for months or even years. such a diagnosis can change a person’s life overnight and have a significant impact on every aspect of life affecting family, friends, income, career or school as well as mental and spiritual well-being. leukaemia is a chronic disease involving the bone marrow that increases the number of abnormal blood cells and decreases the number of normal blood cells. there are two categories; myeloblastic and lymphoblastic and these maybe acute or chronic. one of the most common problems patients experience due to leukocyte infiltration in the tissues is anaemia, which reduces the oxygen carrying capacity of the blood and causes extreme fatigue. other symptoms patients experience from various haematological disorders which includes leukaemia are; pain, bruising, mucositis, nutritional deficiencies, weight loss, nausea, vomiting, digestive upsets, sleep disturbance, impaired body image, anxiety and depression. these symptoms reduce quality of life even before a person undergoes chemotherapy, radiotherapy or bone marrow transplantation. the patients’ condition may be acute or chronic and newly diagnosed or relapsed. even when the medical decision is to adopt a wait and watch approach, the level of anxiety may be very high and life constantly stressful. the opportunity for patients to experience a calming, relaxing therapy that requires no energy expenditure on the part of the patient is a worthwhile adjunct to treatment options and a source of supportive therapy. healing touch is safe for all ages and stages of disease it offers a relaxing and nurturing experience that is therapeutic and able to improve patient quality of life (slater, ). current management of patients experiencing unwanted side effects from the illness and treatment of leukaemia relies predominantly on pharmacology which in itself can create adverse effects. anti-nausea medication for example has the potential to cause sleepiness, dizziness, headaches, dry mouth, constipation or diarrhoea, anxiety and mood changes. psychological distress has often been the domain of the clinical psychologist and spiritual issues have been referred to the hospital chaplaincy team or the appropriate cultural or religious ministers such as kaumatua for māori but positive human touch could be the one thing that is common to all peoples yet lacking in today’s high tech medical environments (pohl et al., ). for all medicines technological strides, it can’t afford to lose touch with the caring side of patient care (dossey, ) the bone marrow transplant unit in christchurch hospital in in christchurch people being treated for leukaemia are cared for by the haematology team and may be in the bone marrow transplant unit (bmtu). the physical location of the hospital haematology department and the bmtu is close to the avon river consequently the water and willow trees harbour the aspergillus fungus species. the potential of contracting aspergillosis is a serious risk to patients with blood cancers, a low white blood count, who are on immunosuppressive drugs or undergoing chemotherapy or organ transplant. some patients being nursed in protective isolation in christchurch may not require this in other geographical locations. a prospective study of patients with oncological-haematological malignancies was conducted in italian centres examining factors affecting patient’s perception of protective isolation. factors associated with negative isolation experiences were; male sex, low education, double room, low satisfaction with visiting times and poor emotional support from nurses (biagioli v, piredda m, & annibali o, ). the haematology team recognised a potential benefit to the patients of providing supportive complementary therapy to improve their health related quality of life at a time when patients are facing a life threatening illness. according to the clinical nurse specialist at the bmtu, there is a gap in what is currently available for hospitalised patients in the form of relaxation therapies so this pilot project was designed as an experimental, interventional study, using qualitative and quantitative methods to evaluate the effect of delivering a “hands-on” complementary therapy, as supportive care to hospitalised patients with blood cancers. the bmtu in christchurch has beds therefore patients would have been the maximum number available to treat if everyone was eligible and wiling to participate in this pilot project. there was no minimum patient recruitment requirement as this was a feasibility/pilot study and as such, all eligible patients were invited to participate and those recruited over the course of the intervention period became the study sample. sufficient numbers were recruited to enable power calculations to be undertaken for a more definitive comparativeness trial at a later date. the patients who opted to receive the treatment sessions on a twice weekly basis, served as their own controls as it was not possible to have a control group during this experimental stage. the clinical nurse specialist cns provided pertinent education to the certified healing touch practitioners chtp’s prior to the commencement of the research project. she arranged a familiarisation visit to the unit and discussed any concerns the practitioners held. the cns educated the ht providers about the patients who were hospitalised with leukaemia’s and the particular issues they were facing. the significant psychological impact on patients and their families was discussed. the diagnosis was always a huge shock and generally created a feeling of disbelief for all involved. on top of this was the social and physical impact caused by long hospital stays time being nursed in isolation units. patients could expect to be in and out of the bmtu for a period of six months or longer during which time they would probably not be well enough to work. this could result in serious financial pressures on top of those already mentioned. chemotherapy treatment is divided into three to four cycles of four to six weeks in duration. by the time patients have recovered from a cycle of chemotherapy it is time to start the next round. the aim for people who are newly diagnosed is remission and the long term goal is for a cure, however the five year survival rate of people diagnosed with acute leukaemia is - %. approximately % of patients are expected to respond to medical treatment for leukaemia while some will die, others will go into remission and relapse only to return months or years later (w jar, personal communication, jan , ). treatment depends on age, co-morbidities, type of haematological disease and the stage of the disease. gaps in research knowledge about healing touch bio-field therapy the national centre for complementary and integrative health (nccih) strategic plan emphasizes fundamental research to advance understanding of the mechanisms through which mind and body approaches affect health, resiliency, and well-being. “large clinical studies are an essential component of the evidence base regarding clinical efficacy or effectiveness. to implement such studies, the magnitude and nature of treatment effects must be estimated in preliminary studies, treatment algorithms must be developed and validated, and feasibility of accrual must be established. methods need to be in place to measure consistency and fidelity of protocol implementation, practitioner variability, and adherence of participants to the regimens being studied. in addition, well-characterized and meaningful clinical and laboratory outcome measures are needed to fully determine safety, and to definitively measure benefit or lack thereof.” https://nccih.nih.gov/grants/mindbody the field of energy healing modalities such as healing touch, does not readily lend itself to traditional scientific analysis because paradoxical findings often co-exist (wardell & weymouth, ). what is reported to have been missing in many studies is information about practitioner experience, confounding variables and the specific ht techniques used. the research committee of healing beyond borders, educates and certifies healing touch practitioners worldwide and it has identified certain areas of research that are lacking or have not yet been explored. there are five areas needing to be addressed; https://nccih.nih.gov/about/strategic-plans/ /objective- -advance-fundamental-science-methods-development#strategy- https://nccih.nih.gov/about/strategic-plans/ /objective- -advance-fundamental-science-methods-development#strategy- https://nccih.nih.gov/grants/mindbody ) to determine the effect of “dose” of healing touch, including frequency and duration of sessions and techniques used, in general and for persons with a particular clinical condition or diagnosis. ) engage in bidirectional, translational research between clinical and preclinical studies (basic science) and settings to provide a more complete picture of health, illness and treatment related to healing touch. ) explore how healing touch might work at the physiological level, particularly looking at stress related immunological, or other independent pathways. ) determine the contributions of practitioner training, intention, treatment expectation, meaning and context in healing touch using a mixed methods approach. ) present and publish research in peer-reviewed journals whenever possible to build the evidence base. (anderson, der-fa, strybol, hess, & mangione, ) (www.healingbeyondborders.org) summary in summary, leukaemia is a disease that has sudden onset and causes major psychological, emotional, social, physical, mental and spiritual turmoil, leading to high levels of chronic, unrelieved stress. http://www.healingbeyondborders.org/ healing touch is a complementary bio-field therapy grounded in the art and science of nursing. it sits comfortably with nursing theorists both ancient and modern from florence nightingale to martha rogers and jean watson. it is a safe, cost effective and nurturing way to provide individualised care and support for patients of all ages experiencing a wide range of dis-eases. in the context of this research the focus will be on treatments provided to a homogenous group of ten inpatients with haematological disorders in . the results of this study focus on the patient experience of receiving ht sessions for - minutes twice a week. the practitioners choice of technique will be of interest to future researchers designing methods to study ht while still retaining the true essence of a heart-centred modality. chapter three literature review in this chapter the purpose of the literature review is explained and will give context to my research. the search terms and criteria are defined before going on to discuss the “hierarchical levels of evidence” used to grade and evaluate the relevant literature. two systems will be presented and specific examples given of where healing touch (ht) studies sit in relation to these criterion. only studies where ht is the key intervention have been chosen for this review. research from the last decade ( – ) will be grouped under the conditions for which ht was utilised. some earlier works pertinent to this study are included and so are some relevant new studies published after . the literature relevant to this research project will be examined and credited for the way it has influenced the design and methodology of this study. lastly i will discuss the limitations, the gaps and the ambiguities before finishing this chapter by looking into what the literature has to say about the future of complementary and alternative medicine (cam) therapies, and integrative medicine (im). methods the literature search was conducted during . databases searched; cumulative index to nursing and allied health literature (cinahl), embase, cochrane library, clinical trials database, scopus, medline, psycinfo, pubmed, science direct, web of science. google scholar was also searched using the key words “healing touch” bio field therapies, energy healing, energy medicine and complementary nursing intervention. many sources use the term “healing touch” in a general way which retrieved , references to appraise in an effort to identify those sources that were relevant to the specific nursing intervention of ht. since there have been a further results using the same search criteria and results up until june . bibliographies on the websites of two organisations; healing beyond borders (hbb) and healing touch program (htp) were also used in the literature search. healing beyond borders (hbb) is an international organisation that trains and certifies ht practitioners worldwide. it holds a repository for bio-field therapy research and offers guidance for future research strategies. healing touch program (htp) could be described as a sister organisation with a similar role. both organisations are based in the usa which is home to the ht modality www.healingbeyondborders.org, www.healingtouchprogram.com a second search string in the same databases looked at supportive care in cancer and non- communicable diseases (ncd), health related quality of life (hrqol), complementary and alternative medicine (cam) and integrative medicine (im). a third search thread looked specifically for the term “healing touch” in relation to haematological disorders, such as leukaemia. the ht modality was of interest when it was being delivered in a clinical setting, as an intervention for human subjects. studies using healing touch on animals, plants and biological substances have not been included nor have those that were specifically looking at other similar therapies such as reiki and therapeutic touch. the search limitations were; english language, and no other complementary therapies, although these may be referred to in this literature review if they feature as a comparator in a ht study. the search encompassed the grey literature which gave rise to eighteen unpublished master’s theses or doctoral dissertations which were discovered by ancestral searching using the reference lists (wicking, ). http://www.healingbeyondborders.org/ the clinical trails website was also searched. this website is a registry and results database administered by the us national institutes of health (nih), as a resource provided by the u.s. national library of medicine. https://clinicaltrials.gov researchers from any country can register a trial and update the trial as it progresses onto completion. australia and new zealand also have a registry for trials conducted within these two countries and a search revealed no trails on this site www.anzctr.org.au under the search term “healing touch therapy”, there were eighteen completed studies registered and two of these involved patients with a haematological disorder but not all research is required to be registered so it is not an accurate reflection on what is currently being researched or has already been undertaken in the field of ht. figure . the seven hierarchical levels of evidence https://clinicaltrials.gov/ http://www.anzctr.org.au/ levels of evidence all the research literature examined, spanned the seven hierarchical levels of evidence, (ingham-broomfield, ) cited in (glover ) based on the nursing research pyramid. (see figure ) this hierarchical system can be pictured as a triangle or pyramid containing the relevant research categories. the least rigorous research makes up the majority of the literature which fits at the base of the pyramid model. the most reputable studies sit at the apex of this model. at the apex of this research pyramid model, sits meta-analyses, of which there appear to be no studies relating to ht, followed by systematic reviews, of which there is one by anderson, der-fa, et al. ( ). at level three there are more than twenty two, randomised controlled trials identified. these studies are recognised as having the highest standards in evidence-based practice and must be of sound design, scientific and reproducible to fit this criteria. “the field of energy healing does not readily lend itself to traditional scientific analysis because paradoxical findings often co-exist” (wardell & weymouth, ). what is missing from many studies is detailed information about the practitioner’s experience, techniques they used, the duration of the session (dose) and frequency of the treatment. an example of the level of scrutiny given to each study identified for a systematic review is seen in anderson, der-fa, et al. ( ).this search result identified three hundred and thirty two ( ) potential studies and three hundred and twenty seven ( ) were excluded as they did not meet the criteria. that left five rct’s eligible to be included by anderson ( ). another simple way used to assess the literature, has been presented by the research committee of healing beyond borders (hbb). in their publication “healing touch research brief”, , (p. ) the research grading appears as; “a”, strong evidence, ”b”, good evidence “c”, conflicting evidence. strong means “findings from three or more rigorous clinical studies, including randomized controlled trials, showing statistically significant evidence of benefit.” good, means “findings from one or two strong clinical studies showing statistically significant evidence of benefit” and conflicting evidence forms category “c”, meaning findings from clinical studies showing conflicting results to some benefit, or results from basic science research. studies here are grouped under populations and conditions rather than the evidence based hierarchy of the research. conditions and populations there are many conditions and populations for which ht has been used, as the following list will show. these include, but are not limited to; cardiovascular disease, coronary artery bypass surgery, anxiety, stress reduction, depression, pain, fatigue, bi-lateral total knee arthroplasty, bariatric surgery, breast cancer, bowel cancer, cervical cancer, ovarian cancer, children with cancer, cancer related fatigue, spinal cord injury, ptsd, elderly, hiv, sickle cell disease, hepatitis c, palliative care, spiritualty and leukaemia. in some of these conditions, such as sickle cell disease and hepatitis c, only one or two studies have been published, conversely for other broad fields such as cancer, there have been at least twenty seven studies published since . the earliest therapeutic touch studies were conducted by delores kreiger (krieger, ) and janet mentgen created healing touch as a continuing education programme in the ’s (mentgen, ). the most recent research published at the time of writing the literature review, identified gentile d et al. ( ) and the condition addressed was cancer pain. this study avoids some of the criticisms made in systematic reviews of earlier ht studies specifically in wardell and weymouth ( ) and anderson and taylor ( ) which noted small sample sizes and failure to include important details such as; practitioner training, techniques used, statistical analysis and lack of a control group or suitable comparator. these deficiencies reflected negatively on the field of cam research, at this time. gentile d et al. ( ), sought to establish and compare the effectiveness of ht and oncology massage (om) in achieving clinically significant improvement in cancer related pain, after one therapy session. this is thought to be the largest study to date, examining a retrospective review of , ht patient’s data and , om patients’ data. ultimately, a cohort of patients with cancer pain was analysed. the study design was an observational, retrospective, pre-test/post-test study of a single ht or om therapy session. the length of session was documented as were the credentials of the practitioners and the techniques they adopted. this study used a non-experimentally manipulated clinical environment (a strength of the study) and it allowed patients to self-select to either ht or om. it notes some limitations, confounding variables and suggestions for future research. most importantly the need to assess the longevity of pain improvement and the optimal number of treatment sessions or dose required to achieve this. cardiovascular disease the strongest evidence for ht has been seen in the field of cardiovascular disease and well- being measures such as improvement in anxiety, mood, quality of life, attitudes and beliefs. there are at least nine studies in this section showing some benefit to patient well-being and the most notable result is a statistically significant decrease in length of hospital stay after coronary artery bypass surgery (macintyre et al., ). this randomized controlled trial comprised patients undergoing coronary artery bypass surgery in a hospital setting. patients were randomised into three groups; “no intervention, “partial intervention comprising a visitor” and the ht intervention, which comprised of one ht session the day before surgery, immediately prior to surgery and the day after surgery. the study measured six items for comparison between groups; length of hospital stay, use of anti-nausea medication, use of pain relief medication, incidence of post-operative atrial fibrillation, functional ability and anxiety. results showed no reduction in pain or anti-nausea medication between the groups but results did show a significant decrease in anxiety and length of hospital stay compared with the visitor group and the standard care group. this outcome lends support for the use of ht as a cost saving measure for hospitals. noetic therapies and cardiovascular disease three other studies on the theme of cardiovascular conditions are; m. w. krucoff et al. ( ), krucoff et al. ( ), seskevich, crater, lane, and krucof ( ). krucoff is an interventional cardiologist at duke university medical centre in durham, north carolina and lead author of the mantra studies. he researched the use of “noetic therapies” – music, imagery, touch therapy and prayer, in what is referred to as the mantra i, feasibility pilot study in and the mantra follow up study in . mantra refers to monitoring and actualization of noetic trainings. noetic therapies is a generic term referring to non-drug and non-device interventions for a medical condition. examples are; distant intercessory prayer, music, guided imagery and touch/bio-field therapies. music, imagery, touch equals the abbreviation in this study (mit). healing touch was one of the noetic therapies delivered. “while these are ancient healing modalities in all of the world’s cultures, the scientific literature and understanding of the role of intangible human capacities in our world of high tech medical care is very, very young” said krucoff. “the mantra study shows that we can do good science in this arena, and that we can disseminate what we learn in high-level peer-reviewed publications. https://corporate.dukehealth.org. krucoff’s research was the first multicentre, prospective, randomized trial of distant intercessory prayer, bedside music, imagery and touch therapy. a total of patients experiencing coronary artery disease and undergoing interventional heart procedures, were enrolled in the study between may and december . the prayer portion of the randomization was double-blinded. nine locations randomised four patient groups into; off- site intercessory prayer and music, imagery, touch (mit) patients, another group of patients received off-site intercessory prayer only, a third group received mit alone and the fourth group ( patients) acted as the control group and received no intercessory prayer or mit. mit was performed by a certified practitioner for forty minute sessions at the patient’s bedside prior to the cardiac intervention. the practitioner applied twenty one healing touch hand positions, each held for forty five seconds. the patient was also taught relaxation breathing, choose music to listen to through headphones and selected an image of a beautiful nature scene to focus on. no significant differences were found between the treatment groups in the primary outcome measures but there was a reduction in pre- https://corporate.dukehealth.org/ procedural distress in the mit group. this group showed changes in self-rated emotional distress. however in the six-monthly follow up the mortality rate was lower in patients assigned mit and lower still in patients receiving both prayer and mit when compared to the control group receiving standard care with no interventions. the strengths of this study include; the number of participants giving statistical weight, the nine medical centres contributing participants giving wide applicability, the reproducibility of interventions by using specific guidelines and documented experience of the practitioner delivering interventions. six month post intervention follow up was yet another strength of this study. beneficial effects of noetic therapies on mood before a medical intervention for unstable coronary syndromes was examined in seskevich et al. ( ). these studies covered more than one condition and involved using ht for stress reduction, for anxiety and depressed mood to enhance recovery from cardiac surgery. hence the difficulty of researching the role of ht for a particular condition or a particular symptom. ht practitioners adhere to the belief that body, mind and spirit are interconnected and cannot be treated as separate parts. integrative therapies are just that; they integrate, connect and enhance the whole human energy structure by creating a coherent state of being. stress, anxiety and depressed mood depression and heart disease have been shown to be strongly connected lin, lin, lin, huang ( ) and jackson, cathie, and sudlow ( ). in fact loneliness and dying of a “broken heart” (acute stress cardiomyopathy) have also been recognised as causes of death (marshall, ). this information is being studied and disseminated by a variety of people and organisations including the “heart math institute.” https://www.heartmath.org/. since , the heart math institute has researched and developed reliable, scientifically based https://www.heartmath.org/ tools to help people understand and measure the connection that exists between the heart and the mind. thoughts and emotions are able to produce biological changes in the body. negative emotions such as frustration, irritation, anger, sadness and trauma get the body wound up and when these emotions are chronically present they can be responsible for the development of hypertension, cardiovascular disease, gastrointestinal problems and substance abuse. conversely, positive emotions such as gratitude, satisfaction, compassion and joy produce beneficial effects on the nervous system. (https://www.ijhc.org/wholistic- healing) “much illness is unhappiness sailing under a physiologic flag.” - rudolf virchow macintyre et al. ( ), showed patients experiencing stress due to coronary artery bypass surgery or invasive medical procedures exhibited decreased feelings of worry after exposure to ht, compared to a visitor only group or a control group receiving care as usual. cancer care a randomised placebo controlled trial was carried out by cook, guerrerio, and slater ( ) using a two parallel arm design on sixty two women undergoing radiation treatment for gynaecological or breast cancer. the participants received either six ht sessions or the same number of placebo treatments for a duration of thirty minutes weekly over a four to six week period. those who received ht showed improved health related quality of life (hrqol) scores in the areas of vitality, pain and physical functioning. the ht arm reported less fatigue but not enough to reach statistical significance. the mock/sham ht sessions and the authentic ht treatments were delivered behind a large opaque screen situated at the patient’s neckline as they lay on a massage bed. the practitioners were instructed not to touch the participants or speak to them. cook et al. ( ) has been cited as an example of https://www.ijhc.org/wholistic-healing https://www.ijhc.org/wholistic-healing a well-designed clinical trial utilising a placebo treatment in comparison to ht. despite the scientific rigour of these results in cook et al. ( ). the potential ht treatment effect may have been very diluted by this design protocol. a trial of this nature would not resemble a “real life” clinical setting, where ht is delivered as a nurturing, comforting gentle touch therapy that utilises both hands-on and hands-off the body and would involve some verbal communication before and after the session. a two parallel arm design with a placebo was used by the following three researchers. schnepper ( ), whose subjects were woman with breast cancer receiving radiotherapy treatment and ht. taylor ( ) studied a group receiving interferon treatment for hepatitis c and jain ( ) measured changes in fatigue and cortisol variability in breast cancer patients receiving ht treatment sessions. another frequently cited study wicking ( ) appears to have been influenced by the need to use a mock treatment in her desire for scientific rigour in . wicking ( ) undertook a randomised placebo control trial (rct) conducted for a phd dissertation at james cook university, townsville australia, to examine the effects of healing touch on the functional health status of community-dwelling single women over the age of sixty-five. the conclusion showed ht may have a beneficial effect for selected older adults, with the ht group showing a modest improvement in social support and the placebo group showing a decline. it is possible the outcome could have been different if the whole ht treatment package had been delivered in a less clinical style. older people living alone are known to lack physical touch and if touch therapy elicits a “relaxation response” as park et al. ( ) explains, then the biological changes that occur in response to nurturing touch may be missing with mock and non-contact touch trials. part of the potential ht encounter is not being experienced. psychological and emotional wellbeing the conclusions reached by wicking ( ) show no statistically significant difference between the ht group and the mock ht group in psychological wellbeing scores. this is contrary to much of the earlier research on ht where thirteen studies reported positive outcomes for psychological wellbeing, eight of which were rcts. quality of life measures in cancer patients have appeared in three other studies showing ht to have a positive impact on health and well-being by eliciting a relaxation response, reducing pain and anxiety and decreasing depressive symptoms. post-white et al., ( ), lutgendorf, ( ) & jain & mills, ( ). post-white et al. ( ), used a three group, crossover design comprising of participants, (not blinded to group assignment), to test the effects of therapeutic massage versus ht in comparison to presence alone or standard care. massage therapy (mt) and ht lowered blood pressure, respiratory rate and heart rate. pain was reduced after massage therapy and after ht. nonsteroidal anti-inflammatory pain relief use was lower in the mt group but there was no effect on nausea. this finding supports the same outcome as did my pilot study. overall mt and ht are reported to be more effective than “presence” or “standard care” alone in reducing pain, improving mood, and lessening fatigue in patients receiving chemotherapy. improvement in well-being and longer term quality of life. krucoff et al., ( , ).has already been mentioned under the cardiovascular condition of uses for ht therapy. it also fits here under the above heading. in the mantra , pilot study, a single ht session was delivered to patients prior to cardiac catheterization, using a pre and post treatment rating. the patients were randomized into five parallel arms, using the noetic therapies: standard care, imagery, prayer, and ht and stress relaxation. analysis showed no statistical difference on anxiety measures in any of the five groups but there was a twenty five to thirty percent reduction in adverse events during the six month follow up period for patients treated with any of the four noetic therapies. this suggests they were all effective therapies. in the mantra ii study krucoff et al. ( ) is noted to be one of the few researchers who built on from an earlier pilot study and moved to the next phase. krucoff et al. ( ) also had the largest sample size seen in the literature but the blending of three therapies could have diluted the results of one therapy or could have negated the effects of the other. in this study arm, ht, occurred once, for a duration of forty minutes and the specific ht technique used was not reported, nor was the level and experience of the practitioner. this could easily be improved in future studies but it is a weakness in the reporting of this study. in this literature review and in my research, particular attention has been directed toward the ht dose, the frequency and the techniques used, as well as the credentials of the practitioner. symptom management pain and fatigue are subjective measures and while they are hard to define they are also hard to quantify. pain is often measured on a visual analogue scale (vas) with a series of faces from happy to sad expressions or a numeric rating scale ranging from - , with zero being non- existent pain and ten being the worst imaginable pain. while most ht studies focus on symptom relief and providing nurturing interventions in high-tech settings as seen in eschiti ( ), some have used comparison methods such as progressive muscle relaxation in a small study conducted to measure chronic and severe neuropathic pain caused by spinal cord injury (wardell, rintala, duan, & tan, ). pain reduction was found to be greater in the ht patient group than the progressive muscle relaxation patient group but this did not reach statistical significance in either group. no significant reduction in the symptom of fatigue in breast cancer patients receiving ht was seen in fitzhenry et al. ( ) who concluded that more work could follow on increasing the dose and “teasing out the therapist effect”. this was also the outcome in this small pilot study of ten patients with leukaemia and again in the work by hacker et al. ( ) on persistent fatigue in haemopoietin stem cell transplant patients. pain in specific conditions fifteen studies have looked at the efficacy of bio field therapies, in the management of pain. these include pain following bariatric surgery anderson, suchicital, lang, and kukic ( ), pain management in knee replacement surgery hardwick, pulido, and adelson ( ), osteoarthritis pain, so, yu, and qin ( ), cancer pain and its treatment in children, kemper, fletcher, hamilton, and maclean ( ), cotton, c, bogenschutz, pelley, and dusek ( ), bio field therapies and cancer pain, anderson and taylor ( ),chronic neuropathic pain in spinal cord injury, wardell et al. ( ) and pain in sickle cell disease thomas, stephenson, swanson, jesse, and brown ( ). some studies have shown that certain types of pain may not respond in the same way in everyone. therefore despite a lack of statistical significance, some patients could experience effective pain relief while other patients may gain no pain relief at all. in my pilot study the symptoms of fatigue and nausea did not reach statistical significance but there was a modest effect on pain reduction. there are no known contraindications for using ht in any population group including children and babies (wardell & weymouth, ). wardell and weymouth ( ) also suggested ht can be a valuable tool in supplementing traditional approaches to pain relief. so et al. ( ) conducted a systematic review evaluating the effect of touch therapies for pain relief in adults experiencing any type of pain. this review included rcts or ccts and only those studies using a sham placebo or a no treatment control, were examined by two independent reviewers. twenty four studies involving participants met the inclusion criteria. there were five ht studies, sixteen reiki studies and three using therapeutic touch (tt). “participants exposed to touch had on average a . units (on a to ten scale) lower pain intensity than unexposed participants.” it would appear the more experienced practitioners had a greater effect on pain reduction and the reiki trials yielded the greatest effects. “whether more experienced practitioners or certain types of touch therapy brought better pain reduction should be further investigated.” (so et al., ). it is worth considering that because reiki is relatively well known therapy there may be an expectation of benefit from the patients thus creating an unexpected bias. however the placebo effect was explored and no statistically significant placebo effect was identified. two of the five studies evaluating analgesic use supported the claim touch therapies minimize analgesic use. the most recent research paper on ht and cancer-related pain at the time of writing, came from gentile d et al. ( ).the design was a pre-test/post-test, observational, retrospective study, comparing the effectiveness of ht and oncology massage (om), on pain experienced by cancer outpatients. a single, forty five minute session of either ht or om was delivered by a certified practitioner and patients reported their pain using a - pain rating scale. the findings showed both ht and om were able to provide immediate pain relief. this is an important finding as undertreated pain is reported to occur in forty percent of all cancer patients. (deandrea. s, montanari. m, mojo. l, & apolone.g, ). although the duration of the pain relief gained from either therapy was not measured in this study, it was suggested as a topic for future research as was the patient’s attitude towards ht and om. this study provided information found to be lacking in previous studies and served as a good example of transparent reporting. it is a well- designed study with adequate power so that it could be rated as a “b”, meaning “good”. it is a strong clinical study showing statistically significant evidence of benefit. this is a worthwhile contribution to the field of non-pharmacological pain relief in integrative oncology. another strength of this study is the, “non-experimentally, manipulated clinical environment” in which the patients were treated gentile et al ( ). paediatric pain one of the few studies involving ht for paediatric oncology patients aged - years of age is carried out by wong, ghiasuddin, kimata, patelesio, and siu ( ) in hawaii. this was a randomized prospective study over one year. delivering ht daily for minutes by a level practitioner. it found positive responses and was seen as feasible to deliver to children in a hospital setting. another study reported a retrospective chart review on , paediatric surgical patients aged between - years. ht treatment was given post-anaesthesia by one of the two certified ht practitioners using a variety of techniques and measuring the effect on pain and comfort using the visual analogue scale (vas). heart rate variability (hrv) and a vas measure for stress, anxiety, depression, relaxation, vitality and overall wellbeing were the measures chosen by kemper et al. ( ) in their study involving nine paediatric oncology outpatients. these outcome measures were assessed pre and post either a twenty minute ht session or the rest and “presence” condition during two outpatient visits. statistically significant differences were found in stress reduction and lower hrv suggesting relaxation. studies using sham or mock ht treatments. the use of sham treatments is an effort by researchers to remove some of the confounding variables and address criticisms by the detractors of bio-field therapies that they only work because of the placebo effect. wicking ( ) used weighted gloves to feel like a human hand in her attempt to incorporate a credible sham treatment. all patients in this study wore eye masks to prevent them seeing the practitioner’s actions during the seven sessions. another attempt to use a sham ht treatment was reported in fitzhenry et al. ( ). this pilot study found no beneficial effect of ht on fatigue or qol and suggested future research may explore increasing dose and teasing out the therapist effect. the control group experienced sham therapy with the sham practitioners instructed to walk around the participant but did not place their hands or arms over the participant’s body. they were instructed not to allow their hands or arms to come within inches of the sides of the participant but to hold their arms still or move them randomly. sham practitioners were given no directions on what to think or any mental activities to perform as had been the case in another study. the sham practitioners were merely required not to speak to the participant during the treatment. this protocol could have had a negative impact on the healer/healee relationship as a “healing partnership” was unlikely to form under such circumstances. building rapport and connecting on a heart to heart level, is an integral part of the ht practitioner training. it is an example of stripping back the components to find the active ingredient when in reality each ingredient adds to the synergistic effect and is necessary to create the change. the art and science of healing may not be able to be dissected to find the active ingredient to measure. healing is an art form, it is individualised and dynamic in its delivery. it is not pre-scripted but spontaneous and given with love and without attachment to the outcome. “he toe -he raupo ano te raupo engari ma te ringa ka hang ate whare.” a maori proverb written on the wall of the canterbury university health sciences department. the english translation says, on their own, toe toe is just toe toe and raupo is just raupo however when combined a house can be fashioned. a ht technique is a series of hand placements on or above the body but combined with “love”, “presence” and “intention” it has the potential to change the bodies vibrational frequency and therefore its state of health. even the term “sham” or “mock” feels uncomfortable as it seems unethical to conceal the truth about what is being done to a person in any situation. fitzhenry et al. ( ) discusses distress or lack of trust that could develop by allowing a patient to expect something will occur but then they find out something different happened. ethical considerations require that false promises are avoided and this also applies to the benefit expected from the treatment being delivered. this means not overselling the therapy and using a written consent form with clear verbal explanations that are standardised and approved by the research institutional guidelines. studies using active comparators verse ht at least five study designs used one active comparator vs ht as a way of comparing the effectiveness of ht. post-white et al. ( ) used massage, ht or “presence” in a three group crossover design with patients, but as wicking ( ) explains, there is a disadvantage to using a potentially active intervention as a proxy placebo: if both interventions are equally effective there will be no statistical significance seen between them. this could be because both interventions are effective or because both are causing the placebo effect or even that one is triggering the placebo effect and one is effective. this could place an excessive burden of proof on the intervention that is being tested in this way. an active comparator being used as a proxy placebo would need to have a solid evidence base in its own right and most complementary therapies are still building that support. (p. ) research changes over time many complementary therapies lack high level evidence for reasons mentioned earlier but this does not mean they are ineffective. an absence of proof cannot be taken to mean something does not exist. take the example given by jonas, “aspirin and penicillin were widely used before research scientists determined how they work” (jonas & levin, ) programme evaluations (descriptive studies) ht training started in the united states in the ’s and therapeutic touch in the ’s so the types of studies being done have matured and evolved since this time. the ’s saw mostly qualitative studies, for example moreland, ( ),morales & watson-druée, ( ); slater, ( ), qualitative studies about the practitioners of ht, such as engebretson, ( ),wardell, ( ) and weymouth ( ) and descriptive case reports of individual patients as seen in wardell et al. ( ). at this early stage in the history of ht research, at least thirteen programme evaluation reports came from hospitals and medical centres throughout america. many of these services were provided on a volunteer basis by healthcare employees or external volunteers, lay people or health professionals. some of the ht practitioners were previous patients who had recovered from cancer and were now eager to train in ht and help others with a cancer diagnosis. one such programme is “bosom buddies” in hawaii which began in the ’s and is the longest running programme for woman with breast cancer. the success of this volunteer programme has spread across the united states under various names. in i visited both the “bosom buddies” program in hawaii and the “healing partners” program at stanford university and i also visited scripps centre for integrative medicine in san diego where ht has been used to treat patients since . client responses were largely positive and consumer demand was usually the trigger for the continuation of ht programme. the ’s saw a change in the research type to pre and post case series designs and a few randomised controlled trials with crossover or parallel arm designs. of particular interest in relation to this literature review is a case series pre-post-test design by danhauer, tooze, holder, miller, and jesse ( ). three, thirty minute treatments per week for three weeks were delivered to twelve inpatient adults with leukaemia. the three validated instruments chosen to measure mood, sleep and the m.d anderson inventory for leukaemia, all showed no statistically significant changes pre and post treatment but the single item symptom measures such as pain and overall distress did show statistically significant changes. this was also a mixed methods study and the qualitative responses were strongly positive and requested longer and more frequent sessions be made available. both qualitative and quantitative research has a role to play in advancing the body of cam knowledge within the nursing paradigm. the research shows patients are using and requesting cam therapies more readily and about percent of american hospitals surveyed in were incorporating integrative medicine therapies. (anderson, loth, stuart-mullen, thomley, & cutshall, ). the top seven modalities offered were; pet therapy, massage, music/art, reiki/ht, guided imagery/relaxation methods. patients do omit acknowledging their use of cam therapies to health professional if they sense it will be viewed negatively or there is an uncomfortableness about discussing it (poynton, dowell, dew, & egan, ). while all research material is of value in building and growing a body of evidence on a subject, it does not all provide evidence to support the use of ht in an evidence-based practice paradigm. it would appear much work has been undertaken by the international organisations, hbb and htp, in the last five years, as evidenced by the dedicated research sections on their websites. another example of this was seen in the updated literature review carried out by (wicking, ). her literature review was thorough in content and analysis of the studies to date, spanning from the beginning of ht as a nursing intervention in the ’s, to the publication of her phd thesis in . by healing beyond borders (hbb) had appointed a research director and established a research committee. the website publishes guidelines for future research and offers suggestions on issues worthy of investigation in ht and the wider field of mind-body therapies. hbb identifies five areas where information is lacking or has not yet been adequately researched. (www.healingbeyondborders.org). ) research is needed to determine the effect of “dose” of healing touch, including frequency and duration of sessions and techniques used, in general and for persons with a particular clinical condition or diagnosis. ) engagement should be undertaken in bidirectional, translational research between clinical and preclinical studies (basic science) and settings to provide a more complete picture of health, illness and treatment related to healing touch. http://www.healingbeyondborders.org/ ) exploration around how healing touch might work at the physiological level, particularly looking at stress related immunological, or other independent pathways. ) determine the contributions of practitioner training, intention, treatment expectation, meaning and context in healing touch using a mixed methods approach. ) present and publish research in peer-reviewed journals whenever possible to build the evidence base. all these suggestions have been recommended by anderson, der-fa, et al. ( ). if cam and integrative medicine are to be part of the healthcare system in the future, cam organisations and cam practitioners will need to gain credibility within mainstream health organisations and gain support from individual health professionals from various disciplines. to do this there must be more evidence based research, just as rigorous as that expected of western medicine, which supports the scientific basis for energy medicine. according to zick & benn ( ), the future will bring a blurring of the boundaries between cam and conventional medicine and this could change the way research is ranked and designed. conventional medicine is symptom specific and focuses on disease classifications, zick and benn ( ) whereas cam is about the whole person and their community. cam is holistic and synergistic and the sum of its parts broken down, do not necessarily equal the whole. cam focuses on the individual and does not lend itself easily to being dissected and pieces studied in isolation like a molecule under a microscope. it is an area of contention when ht practitioners find ht study designs too prescriptive and structured. the spirit of ht and the art of healing itself is diluted in the attention to detail. the essence or the magic of the encounter is lost. the focus shifts to the task of measuring and recording while the patient/ practitioner dyad is compromised. there is a new era of medicine emerging which is using personalised immunotherapy and genetics. the patient’s own cells are used to grow a particular dna in the laboratory and the new dna is then injected back into the patient’s body in a changed state. this concept is expected to change the way disease is treated and may alter the gold standard for research, which up until now, has been the randomized controlled trial. “…. it won’t be diagnosis-based medicine; rather it will be underlying causes and mechanisms that will explain the expression of symptoms or diagnosis.” (zick & benn, ). one of the difficulties in raising the quality of the research being done, lies in the fact that most people interested in doing research on ht or other energy based therapies, are also the practitioners who observe anecdotal evidence on a case by case basis in everyday life settings. some of these practitioners happen to be nurses with institutional backing to support their work and facilitate research but there is little funding and the time commitment is exponentially greater than the resources most people working in the health care industry, have available. “it is an industry where huge profits are made by the controlling pharmaceutical industry, which has a vested interest in continuing to support a “newtonian understanding of the physical world” pierce, ( ). the biomedical model of care has little interest in patient quality of life or supportive care if it does not generate money. supportive care services can provide individualised care and can be personalised to offer a suite of therapies which fit the individual person’s symptom and presentation, rather than the disease classification alone. this could reduce the length of hospital stay and reliance on pharmaceutical drugs and the unwanted effects. it may also help people feel better and save money for a health organisation or hospital but it does not generate money and that means research grants are difficult to find and life in the research world is especially precarious for cam practitioners. the national institutes of health (nih) is continuing to provide funds directed to support research in complementary and alternative medicine (cam). they are aware “cam providers typically have insufficient knowledge of scientific language or research methodology to develop rigorous research proposals without expert help”, zick & benn, ( ). healing touch and haematological disorders a review of the literature found seventeen clinical trials registered on the usa clinical trails.gov website, and no ht trials currently registered on the australia or new zealand site. only two of these studies were on patients with a haematological disorder and both have been completed and published. the first is danhauer et al. ( ), a pilot study using ht as a supportive intervention for a cohort of twelve, acute adult patients, hospitalized with leukaemia. nine, thirty minute ht sessions were delivered over three weeks and pre and post treatment measurements concerning distress symptoms and sleep were completed at weeks one and five. this pilot study took place in north carolina, usa, at wake forest university baptist medical centre, inpatient oncology, haematology unit. it has many similarities to this pilot study and helped to inform the research design but a conscious decision was made not to restrict practitioners to using a specific ht technique or restricting the length of sessions to minutes as was the case in danhauer et al. ( ). this design was probably to create uniformity and reproducibility. suggestions for future research included having a control group to follow the natural course of symptoms over time and to compare ht with another intervention that also elicits the relaxation response. once again the need to look more closely at length and frequency of sessions arose as it has in most suggestions for future ht research. a third suggestion was to gain feedback from the nursing staff’s perspective and this has been incorporated into this research evaluation. the next study was lu, d., hart, l., lutgendorf, s., oh, h., & silverman, m. ( ), patients undergoing stem cell transplant for malignant haematological disorders were randomized to a ht group or a relaxation group. both interventions produced improvement in psychosocial measures and showed a shorter hospital stay compared to the historical comparison group of the same year. ht was better tolerated with % of patients completing the protocol compared to % of the relaxation group. the ht intervention consisted of daily ht sessions for seven weeks starting the day after stem cell transplant. the sessions were delivered by two certified ht practitioners working together using specific techniques over thirty minutes. the relaxation therapy protocol arm, was delivered over the same time frame by a clinical psychology student. the relaxation techniques required more conscious participation by the patient and as a result a higher discontinuation rate occurred. this was a pilot feasibility study identifying the ability to recruit, retain and complete procedures and measure change in patient quality of life (qol) using three recognised assessment tools. a clinical trial was registered in january , in nantes university hospital france and appeared under the search terms; healing touch and leukaemia. the official title was, “the impact of the practice of touch-massage on the anxiety of patients with haematological disorders hospitalized in a protective environment, a randomized, controlled study.” on closer examination, the method involved delivery of three, fifteen minute, touch massage sessions once a week. since this is not the same as ht, despite the closeness of the official title, i removed it off my literature review. health related quality of life and supportive care for patients with haematological disorders nine studies referred to health related quality of life measures, (hrqol), and supportive care interventions for patients with haematological disorders such as leukaemia. one study came from each of the following countries; sweden, india, iran, italy, uk and the remaining four from the usa. a further study that fitted this criteria, utilised healing touch or guided imagery to effect a response in the level of pain, fatigue, nausea and anxiety in patients undergoing chemotherapy. although hrqol is clearly important in leukaemia, a trickle of research has examined leukaemia-specific hrqol outcomes in clinical trials. despite the “emotional exhaustion” that comes from living with uncertainty and disruption to life, little has been put in place in clinical settings to address this in a practical way. patient reported outcomes are becoming increasingly important considerations in research involving drug treatments, clinical practice and policy development. (cella et al., ) beattie & lebel ( ), undertook a literature review about the experience of the caregivers of patients with haematological cancer who were undergoing a hematopoietic stem cell transplant. caregiver distress was found to be highest pre-transplant and decreasing over time, with caregivers displaying distress levels comparable to or higher than the patients distress levels. findings like this show a clear need to provide some form of supportive care to the patient’s support people. some positive and negative results in the literature to date. on the positive side, research has been shown to reduce the length of hospital stay associated with coronary heart surgery significantly (macintyre et al., ) and improve quality of life in patients with cardiovascular disease (krucoff et al., ). healing touch has been demonstrated to be safe, efficient, cost- effective to deliver and has high patient satisfaction feedback (danhauer et al., ). on the negative side, a recent systematic review of clinical trials by anderson and taylor ( ) involving “healing touch” interventions showed difficulties in replicating results, due to poor detail concerning the manner in which studies were implemented, the combination of other interventions used alongside ht, the lack of standardization in the administration of the therapy and the inclusion of participants with different types of illness, in the same study. there was also considerable variation in the level of training and experience of the ht practitioners delivering ht sessions. the areas identified above, can be easily addressed in the methodology of future research. support for touch the touch research institute founded by dr tiffany field focused its early research on the benefit of touch with premature babies who were gently stroked times a day. results showed they gained more weight and left hospital sooner than their counterparts receiving standard care. (scafidi & field, ). this work is now well established and has led to changes in the way pre-term babies are cared for in neonatal units around the world. a review of studies using touch/massage as the intervention in populations with; depression, pain, asthma, chronic fatigue, hiv, pregnancy stress and breast cancer, found a significant level of stress reduction could be demonstrated by measuring urine and salivary assays pre and post massage treatment. these biological markers showed an average decrease of thirty one percent in cortisol levels (which are raised by stress) and an increase of percent and percent respectively, in the neurotransmitters serotonin and dopamine which are the bodies feel good chemicals. this clearly demonstrates one of the biological pathways responsible for the beneficial stress-alleviating effects of touch via massage therapy (field, hernandez-reif, diego, schanberg, & kuhn, ). a similar study using biological measurements in maville, bowen, and benham ( ), measured the effect of ht on stress perception and salivary secreted immunoglobulin a (siga). pre and post measurements were taken in twenty- two patients who had never experienced ht. all the participant’s experienced three conditions; no treatment, ht alone and ht with music and guided imagery over a two week period. statistically significant results were reported with raised immunoglobulin levels and lowered perceptions of stress and pain. canada sets an example for the routine use of healing touch. the first canadian person to do ht research was kathy moreland-layette in . she used a phenomenological methodology to write her master’s thesis concerning the lived experience of woman with breast cancer receiving the chakra connection which is a specific ht technique. toronto east general hospital is the first canadian hospital to make touch therapy available to all patients as a matter of policy. ht is utilised to assist with healing skin wounds, infections and broken bones as well as using it to reduce pain and anxiety in cancer patients (merritt & randall, ).very few studies have focused on how to provide supportive care to patients hospitalised with leukaemia. clinical trials are frequently conducted in this field to determine the safety and effectiveness of new drug treatments but only one non-pharmacological study was found using ht in leukaemia as an intervention for reducing anxiety and stress. as i have already shown, being in a state of chronic stress suppresses the immune system and negatively impacts every system in the body. research directed toward relieving stress and anxiety using non-pharmacological methods leads to the field of touch therapies. gaps identified in the literature gaps identified in the literature have given direction to the design of this pilot project; new studies need to have a homogenous patient group, experienced practitioners of a similar level of accomplishment and the same patient practitioner dyads. these were key elements in twelve out of thirteen studies that had significant results according to rao, hickman, sibbritt, newton, & phillips ( ). the seven practitioners involved in the bmtu pilot study have all achieved level five ht qualifications. four practitioners have been internationally certified (chtp) for over ten years. they were able to choose from the full range of ht techniques, just as they would do in a private clinic setting. the full range of healing touch techniques taught in the hbb curriculum were available to them and for the sake of standardisation and reproducibility these were recorded and evaluated as part of the variable findings. the duration of each session was long enough to elicit the “relaxation response” in the healee and for the healer to feel a sense of completion in the delivery of the session, up to minutes. in a “real world” setting it is possible for a combination of therapies such as music, relaxation breathing, aromatherapy and/or guided imagery to be incorporated into a session but for the purpose of this research, ht was used alone to limit the confounding variables. one patient did suggest music would have enhanced her enjoyment of the sessions. limitations. risk of bias is always a consideration in the reporting of any study but it is less likely to occur in a pilot project using a pre and post design when there is no financial incentive to deliver a particular outcome. without randomisation, blinding or mock treatments, a totally open, honest and transparent process can take place between the patient and ht practitioner which encourages a healthy rapport which supports therapeutic outcomes. it is impossible to know what the specific combination of active ingredients are that creates healing on a physical, psychological, emotional and spiritual level. the previous two chapters have put forward possible mechanisms of action. all healers, to some extent, have a vested interest in their treatments having a positive impact on the healee but ht teaches to set an intention for the clients highest good and then to let go of attachment to the outcome. a healing session is a partnership entered into by both parties who contribute equally to the outcome. this is an important concept and one all those involved in ht research must be cognizant of. the convenience sample of ten patients for research served as their own controls and were self- selected to partake in the ht sessions on offer in the bmtu, for a set period of time. this was also the same situation as was reported in “effectiveness of energy healing on quality of life: a pragmatic intervention trial in colorectal cancer patients”, in the netherlands (pedersen, johannessen, & hjelmborg, ) ambiguous results much of the evidence to date is anecdotal and more research is needed to validate these outcomes and hypotheses. ambiguous results can occur due to sampling error given the small number of participants in the majority of these studies. it has been suggested that rcts alone may not be the ideal design for assessing healing effects (pedersen et al., ). blinding procedures may dilute healing effects by creating uncertainty between patients and healers. hbb research brief advocates research on energy healing using controlled trials that include sample size calculations that are powered to the primary outcome. such trials should clearly define primary and secondary outcome measures and avoid the use of multiple outcome measures. the research brief suggests focusing on one particular non- communicable disease at a time and clearly reporting intervention designs and healer practices to allow for replication. optimal group size and the importance of continuity with the same healer across all sessions will need to be addressed with further research. the aim of clinical trials using non-pharmacological therapies should progress from a simple demonstration of positive effectiveness to showing statistical significance over a suitable comparator. (anderson, ) this literature review chapter, has described several important studies in the field of ht and outlined the relevance they have to this pilot study which used a mixed methods research design incorporating qualitative aspects in an attempt to shed light on some of the ambiguous results from previous ht reviews. the future the current health system is unsustainable because of the increasing burden of chronic disease which is a problem facing the entire world. the focus on disease rather than healing has lead most doctors to treat symptoms rather than causes. prescribing drugs without investigating why the disorder presented itself at this time in the patient’s life. according to (seligman, ) it is clear that patients beliefs about illness, the meaning they attach to treatment and how much they trust their doctor, profoundly affects treatment outcomes. it is clear that the conscious experience of the patient influences disease outcomes. yet for medical treatments to be scientifically proven the influence of the patients mind is removed by using the double-blind, (neither the doctor nor the patient knows whether they are receiving a dummy pill or the active component), randomised, placebo controlled trails. this “scientifically proven” method of testing does not lend itself well to cam treatments because they do not take into account the influence of the mind. the goal of cam modalities such as “healing touch” is to elicit the body’s innate healing ability. medical science views the human body as a machine that needs fixing and machines can’t heal themselves but humans can and do. they possess a powerful mechanism for healing both psychological trauma and disease, chronic pain or physical illness.” (youngson, ) the importance of cam therapies in nursing. expanding the nursing education curriculum to cover cam therapies, could help to meet the changing expectations of society, when it comes to providing information and opportunities for patients to experience relevant and beneficial cam modalities alongside mainstream health care. holistic medicine is an approach to healing that considers the whole person’s body mind and spirit and their interactions in the process of treating disease and promoting health and well-being. truly holistic medicine and supportive care, delivered in the hospital setting, outpatient or community setting, would be money well spent. the society of integrative oncology (sio) clinical guidelines, recommends bio-field therapies such as ht are safe and non-invasive. clinical practice guidelines on the evidence-based use of integrative therapies during and after breast cancer treatment for example, can be read in the ca cancer journal for clinicians article by greenlee ( ). gazella, ( ) published an interview with dr ermininia guarneri, a cardiologist from scripps integrative health centre san diego where she predicts a move towards more personalized medicine. in the future medicine will look at genetic makeup and develop a personalized programme which will treat and prevent illness. guarneri said, integrative medicine lends itself well to personalized medicine. her hope is for more mainstream implementation of integrative medicine like the modalities she advocates at scripps although guarneri says the biggest obstacle to practicing integrative medicine in the usa right now is the financial aspect. most insurance companies are not paying for the therapies. patients using complementary therapies have to be pay privately in most cases. this is making it hard for integrative practitioners to practice and for some people to access self-care that would improve general well-being. there is also a need for good quality research to be carried out on the integrative medicine model (gazella, ) dr robin youngson, senior medical specialist working in the nz public health service believes people who are happy and contented maintain a healthy life style while people who are unhappy, depressed, and anxious and stressed do not maintain a healthy lifestyle. “healthy bodies begin with healthy minds.”(youngson, ) a study by eisenberg d et al. ( ) revealed a % rise in cam use from % to % over a year time period. it has also been suggested from research by burg, kosch, nemis, allen and stoller ( ) that cam use among health care professionals in the state of florida is higher than that of the general public. individualised, holistic, patient- centred care has been part of the nursing curriculum for many years but modern nursing and medical care is being driven by the use of technological equipment and fast paced encounters. the focus is on, evidence-based and scientifically proven diagnostic procedures and pharmaceutical treatments. insurance companies will cover medical and diagnostic procedures, but not time spent with patients listening to their values, beliefs and fears. the less time spent per patient the lower the cost is likely to be. numerous commentators on the subject of the rising popularity of cam modalities, suggest patients are seeking practitioners who will spend valuable time with them. if past figures for cam use in the field of oncology and palliative care are indicative of future use, health professionals could expect to see a rise in the number of patients requesting treatment and information on cam and integrative therapies for symptom management or self-care. the demand for energy based, bio-field therapies such as ht is reported by barnes, bloom, and nahin ( ) in jain et al., ( ) to account for over . million visits, by adults in the united states, to energy healers in the preceding twelve months. this demand is likely to be patient driven. fear and anxiety are common responses experienced by people diagnosed with a serious illness regardless of whether it is life-threatening or not. the literature has shown ht has the potential to have a positive impact on symptom management and quality of life without causing any safety concerns. conclusion “is energy healing an effective non-pharmacological therapy for improving symptom management in chronic illness?” (rao et al., ). evidence supporting the routine use of ht to manage symptoms associated with non-communicable disease is still questionable, due to the quality of the trials that have been examined. future researchers are advised to minimise the risk of bias and adhere to the consort statement. (falci & marques, ; rao et al., ). this document has therefore been utilised and completed as it relates to this pilot research study see appendix c. although this pilot project was not designed as a randomized trial due to issues of practicality and the deeply held philosophical position of the researcher, that such methodology fails to allow for the “healing partnership” to evolve organically between healer and healee in response to the individuals biology and environment. it is clear to see from reviewing the literature that there has been a maturing in the design, the quality and the quantity of research on ht undertaken in the last ten years. the guidelines from the strategic plan (nccih, ) and the research brief from hbb , have helped achieve this rise in standard. as stated in a message from the hbb research director, “while all research related to healing touch is of value, either to determine efficacy, study design, methods or area of focus, only those studies that are published in peer-reviewed journals will play a major role in supporting the evidence base practice of healing touch and its’ inclusion in conventional medical care.”(anderson, ). unfortunately many master’s thesis and phd dissertations sit in the grey literature and remain unpublished. “the tree of medicine must be transplanted into a new soil, where its roots can deepen and intertwine to reach a more complex source of healing knowledge and bring together all traditions of healing, ancient and modern.” dr paul drouin, m.d., imd creative integrative medicine this research is important because so little research has been undertaken in the field of ht and even less in the field of ht in patients with leukaemia. only three studies were found to exist in this specific field. very few clinical trials have included health related quality of life measures despite the ‘emotional exhaustion that comes from living with the uncertainty and disruption to life that leukaemia brings. patient reported outcomes are becoming increasingly important in research, clinical practice and policy (cella et al., ). seven studies, (danhauer et al., ), (cella et al., ) and (buckley, lee, & roland, ) (hacker et al., ; lu, hart, lutgendorf, oh, & silverman, ; miladinia m., ; shanafelt et al., ) each suggest areas needing further study and my work will gather more knowledge to enable better patient and caregiver support into the future. chapter four methods and methodology this chapter is divided into the following sections; the research questions, rationale for the study design, the research setting, data collection and documentation. the study participant’s sociodemographic data and the intervention and materials utilised. key dates and the time line leading up to the delivery of the research intervention and practitioner preparation are also part of this chapter. the final section describes the data analysis which is explained in advance of the results which will be presented in chapter five. research questions (rq) and hypotheses (hy) rq : is ht feasible to deliver and acceptable to receive by patients hospitalised with haematological disorders? hy : supportive care in the form of a hands-on complementary modality improves the patient’s subjective well-being measures. rq : is the patient experience of receiving ht measurable, pleasurable and positive? hy : certain patient conditions or patient groups respond in a positive way to ht therapy. rq : what is the optimal effect of repeated ht treatments on patients improved sense of well- being? hy : there is sustained and accumulative effects from repeated ht treatments that persist into the next day methods this pilot project was designed as an experimental, interventional pilot study, using qualitative and quantitative methods to evaluate the effect of delivering a “hands-on” complementary therapy to ten participants hospitalised with haematological disorders. it was also a feasibility study using a pre-experimental design employed to explore the human element in the delivery of a specific type of human “touch” to provide supportive care over a finite time. ten patients were self-selected to receive twice weekly ht interactions. the aim was to use pre and post-test measures at each session to rate the feasibility, acceptability and effectiveness of ht therapy for this small cohort. a further goal was to replicate and build on from the work of two other researchers whose findings influenced this research design and who have been discussed in more detail in the literature review in chapter three. firstly, danhauer et al. ( ) whose feasibility study found ht was well received by patients hospitalised with leukaemia and recommended more closely examining the optimal dosage. secondly, the work of wilkinson et al. ( ) who carried out a similar pre, post-test design for a master’s thesis comparing three treatment conditions delivered to patients in their home or at a private clinic. each session was thirty to forty minutes long and feedback from both the participants and the practitioners was only negative in regard to the time restriction. discussion on the length of ht sessions was also noted in fitzhenry et al. ( ) who recommended increasing the “dose” of ht to forty five minutes twice a week instead of once a week and strengthening the effect of the intervention by having the same practitioner deliver each session to strengthen the patient provider relationship. however in contrast to this recommendation, goldberg et al. ( ) concluded, ht may have benefit in reducing anxiety prior to a breast biopsy procedure when utilising a specific technique (magnetic clearing) for as little as fifteen minutes. the effects were reported to be immediate and sustained into the following day. methodological position this research is based on a positivist paradigm which seeks to establish the effectiveness of ht in a health care setting. this is considered a naturalistic setting from which to collect data that can be high valid but not necessarily generalizable. the epidemiological design utilised pre and post assessments and semi-structured interviews. adopting this paradigm meant the researcher was separate from the patient once the interventions begun to maintain objectivity. data was collated and analysed by the researcher who was not involved in delivering the supportive care but she was trained in the discipline so that she had a clear understanding of the processes and possible outcomes patients could experience. setting this study took place in the bmtu, christchurch hospital, new zealand, in a specialised, bed unit as described in chapter two. the majority of beds were situated in single rooms with positive pressure air flow ventilation and ante rooms for handwashing and gowning to facilitate protective isolation conditions. a single ward with four beds provided a setting where patients who were not immune-suppressed could interact with each other and another shared room had two beds. there was a visitor’s room with a kitchenette, table, chairs and couches, which was the only shared space available to patients and visitors. a nurse’s and doctors station, utility room, staff meeting room and tea room comprised the rest of the main unit and an apheresis unit was located at the entrance to the bmtu. “ranui house” is located across the road and is administered by the south island bone marrow cancer trust (sibmct) to provide accommodation, care and support for patients and their families from out of town. two of the ten study participants spent time in this setting and received healing touch treatments in their bedrooms at “ranui house”. patients being nursed in isolation frequently describe feelings of anxiety, frustration, loneliness, and boredom and may become stressed, depressed and disorientated (ward, ). factors associated with a higher risk of the negative effects of isolation include being male, of lower education, sharing a room, low satisfaction with visiting times and poor emotional support from nurses. (biagioli v et al., ) the physical setting of a hospital isolation unit and fear of germ exposure, can lead to avoidance of normal touch exchanges such as hugs, kisses and hand holding behaviours. on the other hand, “touch” deprivation is thought to lower immune activity as research by (lutgendorf, ) showed. in this paper ht appeared to preserve immune function by preserving natural killer cell cytotoxicity (nkcc) in patient’s undergoing chemo-radiation for cervical cancer. intentional therapeutic skin to skin touch, is thought to reduce suffering and enhance patient well-being by ameliorating some discomfort from medical treatment and lessening the side effects of chemotherapy drugs. ht is also known to trigger the “relaxation response” as discussed in chapter one and is thought to promote diverse dimensions of healing in the face of serious, life-threatening illness. (benson & klipper, ) the baseline data was collected by the principal investigator (pi) using a semi-structured questionnaire at the patient’s bedside prior to any ht sessions, see appendix b. the ht practitioner used a structured questionnaire before and after each ht session. see appendix d. the patient completed a post-treatment symptom evaluation within twenty four hours following each ht session, see appendix e. this data was stored in a locked briefcase in a locked room for the duration of the study and then taken to the office of the pi for final evaluation and analysis. for the analysis of open-ended questions, a record of anecdotal responses was reproduced word for word and grouped into themes, see chapter five results. documenting sessions the practitioners’ time of arrival and departure was documented in the pi’s “visitor’s book” along with information that included the patient’s name, date and the start and finish time of each session. every session was logged in this book by the person delivering it. the “ht session documentation form” see appendix d, updated information about the patients’ condition at each intervention. a pre and post treatment rating scale concerning six symptoms impacting quality of life and the ht techniques used by the practitioner were completed with the patient. techniques were only restricted to standardized ht techniques to allow for dynamic presentations over time and individualized treatment options. the practitioner then left the modified fact –leu questionnaire see appendix e to be completed with hours of the session and handed back to ward staff in a sealed envelope to be collected and collated by the pi. these questionnaires were coded with a letter of the alphabet assigned to each patient rather than using their name to encourage honest feedback. this limited anonymity was necessary to monitor the effect of ht over time and to then answer the third research question which was, what is the optimal effect of repeated ht treatments on patients improved sense of well- being? the associated hypothesis says there is sustained and accumulative effects from repeated ht treatments that persist into the next day. it also suggests there is an accumulative benefit from repeated ht treatments that does not reach saturation over time. study participants patients in the bmtu who had completed at least one round of chemotherapy were invited by the clinical nurse specialist (cns) to participate in the study. the reason being that the cns knew each patient’s medical history and suitability to participate. eligible and interested parties were given written information packs containing material about participation in this particular study as well as a consent form, and contact details to arrange a recruitment interview if they choose to be involved, see appendix a patients interested and eligible to participate had their questions answered and consent form signed with the principle investigator who then completed the semi-structured initial intake interview form, to gather relevant sociodemographic data, see appendix b. after this interaction, one of seven specially trained chtp’s was randomly allocated to a patient, as they were available, to administer ht sessions twice a week for the duration of their hospital stay or until the end of the study whichever came first. the study period spanned from april to september . there was no minimum number of patients required to treat as this was a feasibility study and as such, all eligible patients were invited to participate and those recruited over the course of the intervention period became the study sample. this convenience sample served as their own controls as it was not possible to have a control group during this pilot study. if ht was found to have no effect on patient clinical outcomes then no comparative effectiveness trial need be undertaken in this patient group. if on the other hand ht was shown to have a clinical effect on health outcome measures, then results from this pilot study would help to determine the effect size and provide power calculation for sample size determination for a future comparative effectiveness trial. a convenience sample of ten participants formed this study cohort, six males and four female’s ranging in age from to years. diagnoses were five with acute myeloid leukaemia, two with burkitt lymphoma and three with non hodgkin lymphoma. two patients identified as māori, one as new zealand european and māori and one new zealand european and czech. all participants spoke english as their first language. four were single, four were married and two were separated or divorced. fifty percent had used some form of cam therapy in the past but % were naïve to ht. ten patients who were eligible for recruitment declined to participate citing, cultural or religious reasons, uninterested in trying the modality or already participating in a research project. practitioner training and experience this study clearly outlines the skill level of the ht practitioners, from the local area who were recruited by the pi to provide ht sessions for the purpose of this research project. a criticism expressed in the systematic review of randomized controlled trials on ht by anderson and taylor ( ) alerts future researchers to a lack of detail pertaining to practitioner training and experience. practitioner expertise is a very real variable which may influence outcome. (wardell & weymouth, ) there were six females and one male ht practitioner. five out of seven were internationally certified ht practitioner’s (chtp’s) with more than fifteen years’ experience. one was also a ht instructor and two were registered nurses. the two remaining ht practitioners were in the process of becoming internationally certified. each practitioner was required to have personal indemnity insurance see appendix g and a signed canterbury district health board (cdhb) “visiting health professional agreement” form on file, see appendix m. the specific ht techniques utilised during ht sessions and the frequency of their use is documented in chapter five p. . the fact the htp’s were free to choose the techniques they delivered to the patients at each session could be considered both a strength and a weakness of this naturalistic study design. as a strength it allowed a group of seven very experienced ht practitioners to respond to each individual patients’ dynamic presentation. this freedom to choose techniques helped practitioners to remain true to the art and science of ht as it is taught in the healing beyond borders (hbb) curriculum.the healing touch certificate programme is overseen by the non-profit organisation healing beyond borders (hbb) and its role is supporting, educating and certifying healing touch world-wide. choice of ht technique also allowed each practitioner to be patient focused rather than technique focused and to respond appropriately to each pre-treatment assessment when making the subsequent choice of techniques. a record of the techniques utilised showed that generally a “full body” technique was used to start a session followed by one or two additional techniques to manage specific symptoms. as this was an experimental pilot project, the technique utilisation information could assist in the design of future studies. this would take into account the changing presentation of a person’s energy field on a day to day basis in response to biological and environmental conditions. the ultimate goal in ht is to facilitate a shift into a more balanced and centred state of being for the patients “highest good”. intervention and materials a goal of this study was to create a setting as close as possible to a regular clinical setting as opposed to an experimental setting. in a “real world” clinical setting the first ht session consists of a consultation in addition to the ht treatment. this was achieved using the initial intake interview form, see appendix a. at every interaction the practitioner does an update and seeks to understand the multifaceted and dynamic issues surrounding the patient’s physical, mental, emotional and spiritual health by asking relevant open ended questions and listening carefully to the answers. this interview was semi-structured to allow for freedom to discussion the course of the patient’s disease and treatment process. a social worker and clinical psychologist were available to refer to if the practitioners were concerned about a patient. informal patient interaction provided another opportunity to answer questions about ht and the research project. once consent and baseline data was completed patients could begin to receive ht sessions twice weekly. this involved lying supine on their bed, fully clothed and covered with a blanket. the practitioner placed his/her hands lightly on or slightly above the body following a pattern purported to support the body’s natural energy flow. the goal of each ht session was to restore balance and harmony to the body and create a heightened sense of well-being. each session could last up to sixty minutes and patients were told they may experience a variety of sensations most commonly a sense of inner peace or feeling deeply relaxed and calm. regular sessions are thought to have an accumulative effect on wellbeing and the third hypothesis put forward stated, there are sustained and accumulative effects from repeated ht treatments that persist into the next day. the independent variable here is the ht intervention. an investigator created five point likert rating scale was used to measure the effect of the outcome variables. zero “ ” represented the least amount of a symptom and “ ” represented the most. this caused some confusion in relation to the “relaxation” state since more relaxation would intuitively be construed as a positive state and could be rated at a five while anxiety, muscle tension, pain, fatigue and nausea when rated a five were less desirable, see appendix d- healing touch session documentation form for the rating scale. this data were collected prior to the first intervention and again before and after each subsequent ht session. those patients in the bmtu for the longest time had the most treatments. the patient served as his/her own control and individual scores were added together and divided by the number of sessions received to form the results displayed in the bar graphs presented in chapter five. the least number of sessions delivered was one, due to unexpected early discharge and the most was , due to one hundred days of hospitalisation following bone marrow transplantation. developing the role of the healing touch practitioner in the bmtu deb carter the chairperson of htnz inc. wrote the guidelines for ht practitioners working in the bmtu, see appendix g “professional protocol for healing touch practitioners working in the bone marrow transplant unit”. the first training session for the seven suitably qualified ht practitioners took place on th july . the education session was facilitated by the pi and delivered by annis parker, senior ht instructor with htnz inc. and international board member for hbb. annis runs her own energy medicine practice for people and animals, in tauranga new zealand. co- incidentally, she was the charge nurse in the bmtu at christchurch hospital some years earlier. the half day workshop covered what practitioners’ could expect to feel, see, hear and smell in the bmtu and how they could maintain a calm, grounded, healing presence regardless of the dynamic energy patterns and presentations exhibited by patients and staff. these responses are connected to illness, psycho-social situations and fluctuations during chemotherapy for example. the clinical nurse specialist (cns) provided education about the diagnoses, presentation and treatment of the patients in this research project and she acted as the liaison person between the pi, the practitioners and the medical team during the course of the study. the preparation and sign-off process took almost a year from the first proposal to the cns and haematologist on st june until rd april when the final items relating to indemnity insurance and the māori consultation process were available to send to the research office of the cdhb, see appendix j. te komiti whakarite - cdhb research consultation with māori. an email was sent to all the bmtu nurses on th april informing them of the authorisation to commence the ht pilot project and therefore they could talk about it with their patients. measurement instruments-validity and reliability the population being surveyed were a random self-selected group of bmtu patients. the purpose of the assessment tools were to measure well-being using the severity of multiple symptoms and the impact of those symptoms on self-reported measures, during the hours post each healing touch session. debate arose between the haematologist, cns and pi over the choice of measurement instrument patients would be asked to complete to measure health related quality of life (hrqol). the application submitted to the university of canterbury ethics committee was for the functional assessment of cancer therapy, fact-leu (version ) and facit-sp (version ), measuring spiritual well-being in people with cancer,(https://www.tacit.org). the complete fact-leu (version ) tool is a comprehensive well validated tool that has four sections covering physical well-being, social/family well-being, emotional well-being, functional well-being plus additional concerns to score. this tool could have been delivered and analysed electronically using an ipad or patient computer. it was noted that most patients had their own computer. the complete fact-leu tool and factit sp were deemed (by the bmtu clinicians) to be much broader than the scope of this study and would have gathered redundant data. it was thought to be too burdensome and detailed for the purpose of a pilot research study which aimed to assess the feasibility, acceptability and effectiveness of ht for patients hospitalised with haematological disorders. the resolution of this debate involved an amendment to the uc ethics committee for the use of a shorter and less detailed measurement instrument. this became the modified fact-leu tool comprising of ten questions delivered post each ht session. it lacked the validity, specificity and reliability of the unmodified tool since only a selection of ten questions were retained out of a possible and respectively. once the questionnaires were printed and https://www.tacit.org/ viewed again by the health professionals in the bmtu a further question was removed because it was thought to have the potential to cause distress to participants. “question stated, “i worry that my condition will get worse” and the choice of answers on this likert scale questionnaire that ranged from = not at all, = a little bit, = somewhat, = quite a bit and = very much. this was subsequently deleted as requested by the haematologist and clinical nurse specialist overseeing the pilot project. below is a presentation of the outcome measures used to answer the three research questions. table . summary of outcome measures summary of outcome measures baseline pre post consent  initial intake interview form  healing touch session documentation   patient post treatment questionnaire/ modified fact leu  final evaluation questionnaire for patients  anecdotal comments  written staff evaluations  the pi/researcher modified tool did produce useful data which was congruent with findings from recent studies on ht in oncology patients. these included findings described by post- white et al. ( ), goldberg et al. ( ), and gentile et al. ( ) evaluations were collected from all participants in this study within the twenty four hour period after each ht session, see appendix e patient post treatment evaluation (fact-leu) functional assessment of cancer therapy- leu quality of life (qol). patient “a” became the test patient and modifications were also made to the “healing touch session documentation scoring items in response to his feedback and that of the ht practitioner. the original items were; anxiety, relaxation/ stress, pain and mood on a scale of one to five. the modified version had six items and these were; anxiety, relaxation, muscle tension, pain, fatigue, and nausea. the numerical scoring key was also clarified. oral mucositis is acknowledged as a significant symptom common in patients undergoing chemotherapy or radiation treatment. it was not incorporated into the symptoms measured in this study due to the confounding variables it would involve. all patient evaluations were collected in a sealed envelope to maintain anonymity and encourage honest responses. nurse’s feedback, a psychologist’s feedback, anecdotal evidence and unsolicited feedback received during this time was collated and used in the final evaluation process, see appendix f. the instruments placed in the appendix were utilised as measurements to assess the clinical effectiveness, feasibility and acceptability of ht for patients and to answer the three main research questions and hypotheses presented on p. key dates and the timeline leading up to the commencement of the pilot project. the first meeting to discuss the possibility of delivering ht as a relaxation therapy to patients in the bmtu occurred on st may . it was an informal meeting in the hospital cafeteria with a haematologist and clinical nurse specialist. they were interested in providing a service for patient support and well-being but did not have the time to create such a service or facilitate it. a month later a proposal was presented to key people in the unit and suitably qualified and enthusiastic ht practitioners were being invited to form a team who could deliver ht sessions to this particular cohort of patients. consultation took place with ht new zealand (htnz inc.), which is an incorporated society and a non-profit organisation governing and training ht practitioners. the committee was approached and agreed to be the over-seeing community organisation to provide and vet suitably qualified ht practitioners for the duration of the pilot project and into the future. see appendix g professional protocol for ht practitioners working in the bmtu. an application for funding to pay the practitioners had been applied for from “dry july” funds and five thousand dollars had been granted. dry july is a charity which receives donations of money from people in australia and new zealand who chose to give up drinking alcohol for the month of july to support various projects for cancer patients. a separate bank account was set up to receive this external funding and pay it out on the receipt of practitioner invoices for services delivered. invoices were sent to the ht treasurer monthly. the rate was set at $ per session, which was the average charged for a ht session in the local community. on rd march the human ethics committee at the university of canterbury approved the research proposal, subject to the canterbury district health board ethics application being accepted and forwarded to them. the ht pilot project was finally signed off by the general manager of christchurch hospital on th april , see appendix l. a meeting was held for the htp’s in a neutral location off site on th may to provide feedback and an opportunity to share experiences to date. at this stage five patients had signed consent forms and been allocated a practitioner. the aim was to provide each patient with two ht sessions per week for the length of their hospital stay. at the time of the first review meeting sessions had been delivered. it was noted by the htp’s that there was more comings and goings of patients between rounds of chemotherapy and medical treatment than had been anticipated so it was decided that the next appointment would be set up at the completion of each session rather than on a regular day of the week. in the event of a practitioner being ill or unavailable at short notice the pi arranged for someone else to fill in, so some patients had two different practitioners. sample sessions for staff the team of ht practitioner’s set up massage tables in a quiet room in the bmtu to offer free ht sessions to staff on th may between - pm. the first staff sessions had been well received four months earlier. the aims were to be available to staff starting or finishing a shift, to familiarise medical staff with the pilot project and offer first-hand experience of what ht felt like to receive a ht session. data analysis consent was obtained from the patients themselves. self-determination and confidentiality were ensured during administration of questionnaires and practitioner update meetings about the research project and later in the process of thesis writing. anonymity was difficult to maintain with a cohort of ten participants in total so letters of the alphabet were used to identify each participant rather than the name. reliability and validity were further increased by pretesting the questionnaires using the responses of the first participant to consent to the study and feedback from the ht practitioner delivering the questions. data was collated and graphed to allow it to be visually analysed and descriptive statistical analysis performed using the spss programme to determine statistical significance. the data sets pertain to sociodemographic data, patient responses, techniques utilised in the treatment sessions and nursing staff feedback. visual analogue scales have been used successfully in a number of ht studies and are a common tool in social science research settings and despite their simplicity are well accepted and validated psychometric tools. the pi was influenced to utilise a - scale after discussion with a psychology professor who felt there was little to gain by using the more common expanded rating scale of - . chapter five will display these graphs and report on the results drawn from them. the findings will be examined in relation to the research questions. analysis undertaken to address research question one concerned the feasibility of delivering ht and it’s acceptability to this patient group. to answer the acceptability question an overall helpfulness question was asked as well as the appropriateness of the length of the session and the responsiveness of the practitioner to the patient during the session. this also helped to answer question two which asked whether the experience of receiving ht was measurable, and we choose to measure six subjective symptoms by asking the patient to rate them pre and post-test. it was hypothesised that certain patient conditions or patient groups would respond in a positive way to ht treatments. evaluation comments on pages - frequently use the word “relaxed” and therefore this supports the pleasurable and positive patient experience of research question two. measuring the patient experience is often subjective and open to confounding variables. chapter six talks about future recommendations and discusses research tools that lend themselves well to cam therapies. research question three was approached by assessing fact leu questionnaires which were post treatment patient evaluations completed over the next day which allowed for the “sleep quality” “satisfaction with coping”, “energy level” and “bothered by side effects”, to be included. conclusion this chapter described the research methods employed. it included the population sample, data collection instrument, documentation and strategies used to ensure the ethical standards, reliability and validity of the research. it presented the qualifications of the ht practitioners, the selection process, preparation and reimbursement arrangements carried out. this was deemed to be important as this level of information has been deficient in earlier research. chapter five results the results of this study are presented from the findings generated by analysing three patient focused instruments discussed in chapter four and the practitioner focused “healing touch technique tracking form”. lastly a collection of all the written comments from patients and staff feedback are grouped into themes and presented as they were written. instrument one the “initial intake interview”, a researcher made questionnaire compiled from samples of historical “intake interview templates” used in the healing touch international curriculum. the initial intake interview was completed by the principle investigator (pi) at the patient’s bedside after the consent form was signed and prior to any ht intervention. table : sociodemographic data demographic/ clinical characteristics number percentage age (years) - average age gender male % female % ethnicity nz european % māori % other or mixed nationality % diagnosis acute myeloid leukaemia (aml) % non-hodgkin lymphoma % burkitt lymphoma % progression relapse % initial diagnosis % job status employed or self-employed % student % awareness of healing touch naïve to healing touch/bio-field therapies % belief in healing properties of healing touch % familiar with any other cam therapy yes % no % marital status single % married % divorced/separated % religious/spiritual belief or practices yes % no % alcohol yes % no % coffee yes % no % tobacco no % ex-smoker ( using nrt patches) % energy drinks/ coke yes % no % significant stress in life prior to diagnosis (work/study, family, financial, grief) yes % no % nine out of the patients identified stressful events in their life prior to the diagnosis of this current illness. instrument two the ht documentation form gathered pre and post treatment data to answer the first research question; is the patient experience of receiving ht measurable, pleasurable and positive in this homogenous patient group? the patient’s answers were collected as part of the htp’s ongoing assessment of the patient pre and post each session. this patient update also helped to inform the htp’s choice of techniques available for him/her to utilise. a patient self-reported symptom rating likert scale of zero to five ( - ) was used to score the effectiveness of the ht nursing intervention, over six variables; relaxation, anxiety, muscle tension, pain, fatigue and nausea. each participant’s scores were added together and divided by the number of sessions they received to give the mean overall score. these were then graphed to provide a visual description of the results. a gap on the graph means the score was “ ” pre and post treatment and therefore it was not a symptom present for that patient at that time. the t results are presented in the following figures - . =no relaxation = most relaxation pre post . . . . . . . . . . . . . . . figure effect of healing touch session averaged figure indicates a statistically significant t difference in the mean pre versus post-relaxation score at t ( ) = . , two-tailed p< . ). patients reported a difference in relaxation in the expected direction that is they became more relaxed suggesting a positive ht effect. here patient “seven” has not rated any level of relaxation. =no anxiety = most anxiety anxiety pre post . . . . . . . . . figure effect of healing touch session averaged figure indicates that the mean pre versus post-anxiety scores were statistically significant, t ( ) = . , two-tailed p< . . patients reported a difference in anxiety in the expected = no relaxation = most relaxation p a ti e n t n u m b e r relaxation post pre =no anxiety = most anxiety p a ti e n t n u m b e r anxiety post pre direction that is they became less anxious which suggests a positive response to the ht intervention. patient “three” as well as patient “five” and “seven” did not indicate anxiety was present for them at any level. =no tension = most tension pre post . . . . . . . . . . . . . figure effect of healing touch session averaged figure indicates that a statistically significant t difference in the mean pre versus post- muscle tension score was obtained, t ( ) = . , two tailed, p < . . patients reported a difference in muscle tension in the expected direction that is they became less tense which supports a positive response to the ht intervention. patient “three” and patient “seven” reported no muscle tension while patients and showed a significant change from pre-test to post-test. =no tension, =most tense p a ti e n t n u m b e r muscle tension post pre =no pain = most pain pre post . . . . . . figure effect of healing touch session averaged figure indicates a statistically significant difference in mean pre versus post-pain scores, t ( ) = . , two tailed, p < . . patients reported a difference in pain in the expected direction that is they reported less pain post-treatment compared to pre-treatment. this figure also shows patient “one” and patients “five”, “nine” and “ten” did not report a pain symptom. =no pain, =most pain p a ti e n t n u m b e r pain post pre =no fatigue = most fatigue pre post . . . . . . . . . . . . . . figure effect of healing touch session averaged figure shows there was no statistical significance in the mean pre-fatigue versus mean post- fatigue score, t ( ) = . , two tailed, p < . . patients reported no change in fatigue from pre to post treatment sessions overall. only patient “three” experienced no fatigue. despite no statistical significance there was marked clinical significance in reduced fatigue rating in the responses from patients “one”, “two”, “four” and “nine”. =no nausea = most nausea pre post . . . . . . . . . figure effect of healing touch session averaged =no fatigue, =most fatigue p a ti e n t n u m b e r fatigue post pre . . . =no nausea, =most nausea p a ti e n t n u m b e r nausea post pre figure shows there was no statistical significance in the mean reported pre-nausea versus post-nausea scores, t ( ) = . , two tailed, p < . . the patients reported no measurable change in nausea from pre to post treatment sessions however three patients indicated that they were not experiencing nausea at this time in their treatment. two respondents noticed no improvement pre and post treatment while three patients did feel less nauseous post treatment and patient “six” had an increase in the nausea. table presents a summary of the mean, standard deviation and standard error of mean for the main outcome measures table also shows there was a significant effect on the symptom measured pre/post- test when the right hand column calculation was p< . .overall, the patients reported statistically significant changes in the measures suggesting improvements in anxiety, relaxation, muscle tension and pain. by comparison there was little change in reported fatigue and nausea symptoms. table . paired sample statistics mean std. deviation std.error mean sig. (p< . ) pair pre-anxiety . . . . post-anxiety . . . pair pre-relaxation . . . . post-relaxation . . . pair pre-muscle tension . . . . post muscle tension . . . pair pre-pain . . . . post-pain . . . pair pre-fatigue . . . . post-fatigue . . . pair pre-nausea . . . . post-nausea . . . instrument three the post treatment evaluations-(modified fact-leu) results showed % of patients found the sessions either “quite helpful” or “very helpful” (see figure below). one person did not find the ht treatment helped him overall, but % of respondents felt the length of the sessions were about the right, (see figure ). this was a positive result which supported the pi’s rationale that previous research designs published in the literature may have delivered an inadequate dose to elicit the greatest potential benefit from each exposure and accumulated exposures over time. this was supported by analysing responses on the helpfulness rating scale which showed a strong correlation between the number of sessions and the degree of helpfulness rating, (see figure ). self-reported rating of perceived health benefits. figure : q . overall i have found these sessions helpful figure : q . was the most recent healing touch session not at all a little bit somewhat quite a bit very much n u m b e r o f se ss io n s patient responses about right too long n u m b e r o f se ss io n s patient response figure : an example of helpfulness rating using patient a’s data. figure was the practitioner responsive to your needs? all patients felt the practitioner was responsive to their needs, (see figure ). yes no n u m b e r o f se ss io n s patient response figure modified functional assessment of cancer therapy-leu (fact-leu) figure shows the effectiveness of ht on eight areas of physical and emotional health as perceived by the patients up to hours after a ht therapy session. the same material is presented in the form of individual bar graphs for each condition relating to symptom management in response to ht. what does this result mean for the three research questions? the results from the bar graphs support the first research question that looked at whether ht was feasible to deliver and acceptable for patients to receive. patients looked forward to the ht sessions and % said the duration of the sessions at to minutes was about the right. from this response it could be concluded that the delivery of ht was acceptable to patients. was it feasible to deliver? to answer this question we need to look at funding, timing and i am sleeping well i am satisfied with my coping i have lack of energy i feel sick i have pain i am bothered by side effects i feel ill i feel anxious treatment sessions delivered (n= ) post-treatment evaluations received (n= ) s ta te o f w e ll -b e in g s y m p to m s post treatment patient self-evaluations very much quite a bit somewhat a little bit not at all ongoing availability of certified ht practitioners. as this project was funded by “dry july” funds to the sum of $ , it could be difficult to find ongoing funding for a permanent ht programme. it may an initiative the local bone marrow transplant trust would consider funding. another option would be to create a ht practitioner position in the haematology department to enable a wider range of patients to receive supportive care. it could also be run as a voluntary programme alongside other voluntary services provided by the hospital. in america and hawaii volunteer ht programmes run in hospitals, communities and healthcare facilities but this is not a path the pi favours going down due to the belief that htp’s deserve to be paid for their time and expertise. financial recompense creates a professional workforce and a greater level of commitment and loyalty to service delivery especially in a location such as christchurch where there may only be five to ten people available to physically fill such a position. it may be feasible to offer ht sessions on set days of the week to patients who put their names on a list in advance. timing could then be planned to fit around medical procedures and routines on the ward. hypothesis one suggested supportive care in the form of a hands-on complementary modality improves the patient’s subjective well-being measures. the bar graphs were created by adding together relevant data from all the sessions for a particular patient and dividing by the total number of sessions. rq : is the patient experience of receiving ht measurable, pleasurable and positive? rq : what is the optimal effect of repeated ht treatments on patients improved sense of well- being? there is sustained and accumulative effects from repeated ht treatments that persist into the next day the final question was to rate overall helpfulness of these sessions and this has been produced on a separate graph on page . the bar graphs below present each individual question from the patient’s post treatment questionnaire. figure i am sleeping well the majority of patients were sleeping quite well in the hours post ht sessions and none were experiencing severe sleep problems. figure i am satisfied with how i am coping with my illness eighty percent of patients ( %) were quite satisfied or very satisfied with how they were coping with their illness. not at all a little bit somewhat quite a bit very much n u m b e r o f se ss io n s patient responses not at all a little bit some what quite a bit very much n u m b e r o f se ss io n s patient responses figure i have a lack of energy figure i feel sick figure i have pain figure i am bothered by side effects of treatment not at all a little bit some what quite a bit very much n u m b e r o f se ss io n s patient responses not at all a little bit somewhat quite a bit very much n u m b e r o f se ss io n s patient responses not at all a little bit somewhat quite a bit very much n u m b e r o f se ss io n s patient responses not at all a little bit somewhat quite a bit very much n u m b e r o f se ss io n s patient responses figure i feel ill figure i feel anxious figure overall i have found these sessions helpful not at all a little bit somewhat quite a bit very much n u m b e r o f se ss io n s patient responses not at all a little bit some what quite a bit very much n u m b e r o f se ss io n s patient responses not at all a little bit somewhat quiet a bit very much n u m b e r o f se ss io n s patient responses figure length healing touch session this pie chart shows that % of participants felt the duration of their ht sessions were of a comfortable length with one person suggesting it was too long. % % about right too long healing touch techniques utilised by practitioners the figure below records the number of times a particular technique was used during the sessions. it is common practice to use more than one technique per session and often a full body technique is followed by a quicker more specific technique to relieve a particular symptom. table . choice of healing touch technique choice of healing touch technique intention setting, ground, release field re-patterning chakra energising/connection noel's mind clearing siphon (pain drain) beak laser hands still hara connection endocrine balance immune boost chakra spread chelation grand cross core balance modified mesmeric clearing spiral meditation pyramid technique headache techniques hopi back technique sword laser lower body connection spinal flush/vertebral spread spinal clearing amygdala connection limbic balance lymphatic clearing celestial and ketheric re-patterning scudder meridian clearing practitioners were given freedom to choose the ht techniques they felt best suited the presentation of their particular patient on the day. the choices were documented on the ht patient documentation form and the number of times a technique appeared was added up to form the above list. a total of different techniques were utilised by the htp’s and implemented times during ht sessions. it was acknowledged as standard practice to begin each session by; setting an intention, grounding and then carrying out a “release method” at the end of the session to disengage from the patient’s energy field. therefore this procedure was not counted as a separate technique. the four most frequently used techniques were; field re-patterning, noel's mind clearing, chakra energising and energetic siphon. “every session builds on and re-enforces prior sessions and helps to create a healing grid that strengthens the individual. when a change occurs in an individual, it affects the planetary field, shifting interactions consciously and unconsciously…. the evolution of the healer is also shifting to a higher vibration. both the client and practitioner are then radiating healing energy into the planetary field. this radiant healing energy ripples outward and influences their families and relationships, extends into their communities, and then out into the world” (wardell et al., p. ). comments/feedback from the patient group the feedback and comments from the study participants has been grouped into themes; responses, symptom relief and recommendations. research question number two, asks if the patient experience of receiving ht is measurable, pleasurable and positive? responses grouped by theme. these responses suggest ht was able to provide a pleasurable and positive state which included symptom relief. nine out of patient feedback comments used the word “relaxed”. the responses that follow are transcribed from the patient evaluation forms. “today was great, so relaxed i fell asleep.” “relaxing- lots calmer than at the start of the session” “leg restlessness mitigated from treatment” “extremely relaxed” “relaxed, very tired still, abdominal pain and nausea gone.” “sleep easier now, cleared chest wheeziness” “loved it, felt very relaxed and enjoyed the sense of touch, could immediately feel relaxation at the beginning of the session” “legs felt better with nerve pain gone” “very, very relaxed” “last night was the best night’s sleep even though i didn’t feel better in the morning” “i slept/sleeping so much better, my head is clear, i am more aware of what’s going on, my pulse has dropped to from , i’m not feeling anxiety like before. my mum also felt the benefit of my ht treatment, she enjoyed it and that night she slept well” “it (ht) helped everything. i feel calm and relaxed after each session, i have lots of snoozes” “i enjoyed that”, “i feel revitalised” “i can feel the energy change in my body, a lovely whoosh of warm energy fills my entire body and i feel so relaxed” “look forward to the healing sessions” “i felt the twitches, i feel lighter now” recommendations from patients. there were some suggestions for improving the ht experience which are grouped below. “felt good, very relaxed but think it would be better to do the session on the bed (instead of the chair) next time” “maybe a little more quiet time after the session-maybe ½ an hour- just to sleep and be still.” “maybe some ambience sounds, water, rain etc” “don’t have people coming in and out of the room while having session” unsolicited responses from relatives have been included and follow. “felt it (ht) was helping to make him able to cope with treatments better” “patient said she loves ht and would be recommending it, especially thought men should have it. other patient responses documented included; felt it was a great and welcome addition to treatment” “this has been an enjoyable thing to be involved in let’s hope it keeps going” “i still love my treatments (ht) and look forward to them, they are so helpful” (her comment after sessions). staff feedback the impression gained by the staff who completed a questionnaire at the end of the pilot project was that most patients enjoyed ht. it was seen by the staff as a great service and most hoped it would continue to be available. one particular comment said “it’s a fantastic way for patients to focus on something helpful and good during their treatment, which can be pretty awful.” ht gives patients “time-out” from the medical world they are forced to remain in for long periods of time. it was seen as a bonus that the ht sessions were provided free of charge and on the ward. while the referral process was easy there were some challenges in explaining the purpose of ht to patients and recruiting them to the study in the first instance. a suggestion was made to advertise the sessions more so all patients are aware and have the opportunity to participate. it was also suggested that complementary therapies had a greater presence on the ward and were incorporated into treatment regimes. eleven staff partook of the ht sessions offered to them on two occasions and those staff were the greatest advocates for recruiting the study cohort. the staff also mentioned finding the ht sessions relaxing both mentally and physically and in a busy and stressful working environment this was seen as positive self-care. there are hospitals such as “queen’s hospital” in honolulu that offer staff ht sessions on a regular basis.https://www.healingtouchprogram.com/content_assets/docs/current/queens% me dical% center.pdf volunteers have been doing this for more than years and also run classes to teach ht techniques to those who are interested. this could well be seen as an insurance policy against the high level of stress and “burn-out” observed amongst health https://www.healingtouchprogram.com/content_assets/docs/current/queens% medical% center.pdf https://www.healingtouchprogram.com/content_assets/docs/current/queens% medical% center.pdf professionals in both primary and secondary care settings. see appendix f programme evaluation for ward staff. the literature review in chapter three, discussed studies of energy healing confined to human subjects and ht. the results suggest ht has shown efficacy in reducing anxiety, improving muscle relaxation, aiding stress reduction and relaxation as well as creating a sense of well-being. there is less evidence to support a link between ht treatments and a reduction in pain and nausea these findings are supported by the comments and feedback shared from written patient evaluations. the frequent reference to “feeling relaxed” and calm and looking forward to the ht sessions while experiencing relief from certain symptoms, suggests ht has the potential to improve health related quality of life (hrqol) in this cohort at least. some patients also experienced a reduction in pain, nausea and fatigue while others did not. ht was found to significantly improve pain, nausea and anxiety in patients undergoing bariatric surgery, anderson, suchicital, lang, & kukic, ( ). while the findings of cook ( ), do not support a beneficial effect of ht for fatigue or hrqol. it is important to note that in this particular study, the ht practitioners were instructed not to physically touch the patient or engage in dialogue. this research design may have greatly impacted the efficacy of the ht therapy and for this reason a recommendation from this study for future research, was to explore increasing dose and teasing out therapist effect. an attempt has been made in this pilot study to carry out both these recommendations hence the sessions lasting - minutes and the same htp for each patient. reporting the level of practitioner training and qualification was another recommendation followed in this study. the duration of symptom relief gained from ht therapy was not measured and has also been suggested as a topic for future research throughout the literature (engebretson & wardell, ). summary this chapter provides an analysis of the data collected and statistical tests applied to that data. despite the small sample size results support a statistically significant difference in “pre/ post” tests showing improvement in relaxation, pain, muscle tension and lower anxiety levels. while the symptoms of fatigue and nausea were not statistically impacted by ht therapy there were clinically significant improvements for some patients. from the patient responses it seems to suggest the “dose” (length of the session) was about right at fifty to sixty minutes. by comparing the post treatment scores with the correlating symptom on the fact-leu questionnaire up to hours post session, there appears to be support for hypothesis three which suggests, a sustained and accumulative effect occurs from repeated ht treatments which persists into the next day. it could be argued that ht does not reach saturation because even the patient who received treatments reported ongoing benefits that were not confined to the measurements chosen for this pilot study. this was demonstrated by the following words written in the free text box of her evaluation, “i still love my treatments and look forward to them, they are so helpful” (evaluation sheet after session ). according to the practitioners providing the ht sessions, patients displayed the “relaxation response” more quickly with each successive session and a lesser “dose” may have provided similar benefits once the patient was familiar with the ht process. therefore it could be argued that a certain number of “priming” sessions may create the best platform from which to build individual dosing regimens followed by sessions of lesser duration but using targeted techniques for symptom relief. longer term effects, after hours were not measured and therefore further research would need to be carried out to say whether the effects of ht were sustained or not sustained over a longer period of time. feedback from staff appears in appendix f and is generally very positive and supportive of the ht pilot project. the nurses who took the opportunity to experience a ht treatment for themselves found it easier to explain to their patients what was involved and were most supportive towards the practitioners presence in the bmtu. all the staff made an effort to avoid unnecessary interruptions during treatments but suggested signage on the patient’s door would have helped them unwittingly disturb the treatment. chapter six discussion and conclusion research question one asks; is ht feasible to deliver and acceptable to receive by patients hospitalised with haematological disorders? from the data gathered to date ht would appear to be a positive and well received complementary therapy. the related hypothesis states that supportive care, in the form of a hands-on complementary modality (ht) improves the patient’s subjective well-being measures. it became clear as time went on that the more sessions a patient experienced the more quickly they exhibited the “relaxation response”. this appeared to decrease sympathetic arousal as evidenced by a change to a slower respiratory rate and heart rate and presumably oxygen consumption. once the patient was observed by the htp, to be in a calm, relaxed state they were presumed to be an “alpha” brain wave pattern, which is deeply relaxed. it was hypothesised that they would receive the same benefits from a shorter duration and “dose” of ht after some initial “priming” sessions. research question two asks if the patient experience of receiving ht was measurable, pleasurable and positive. there may be better tools available to measure this and i suggest also measuring biological markers in the endocrine or immune systems using blood that is already being drawn often for platelet and white cell count monitoring. this could lend weight to demonstrating an effect that is more quantitative than qualitative and subjective. (lutgendorf, ).another example of this is seen in a well-designed study measuring haemoglobin and haematocrit levels in response to therapeutic touch, another bio-field therapy similar to ht by (movaffaghi z, hasanpoor m, farsi m, hooshmand p, & f., ) the second hypothesis suggested certain patient conditions or patient groups respond in a positive way to ht therapy. it would appear that most patients respond in a positive way even if that is to experience an emotional release. the effect of ht has been shown to be safe in a wide range of conditions and for all ages and therefore this hypothesis is redundant (post- white et al., ). research question three asks, what is the optimal effect of repeated ht treatments on patients improved sense of well- being? there could be many reasons why patients experience an improved sense of well-being. as we have already discussed in chapter two, the synergistic effect of bio-field therapies makes it almost impossible to tease out an active ingredient and in so doing the effect is likely to be diluted. hypothesis three suggested there were sustained and accumulative effects from repeated ht treatments that persisted into the next day and for at least hours. this was a finding of (kristoffersen, stub, knudsen-baas, udal, & musial, ) the pre-post changes in this norwegian study of people visiting healers, found it took an average of . treatments for changes to occur. the study participants reported substantial improvement of symptoms, improved well-being and activity level after a healing session but also some negative effects which dissipated within hours. conversely, participants in the bmtu study showed pre and post changes from the very first ht session but the perceived benefit did increase as the number of sessions increased. the results of this study strongly support a dose response effect for ht. post-white et al. ( ) looked at symptom management in cancer care, and found improvement in fatigue and pain compared to those treated with massage or “presence” alone. pain and fatigue were not found to be statistically impacted in the bmtu study but some individuals experienced symptom relief. despite recent advances in chemotherapy and transplant methods, patients with haematological malignancies still suffer from a reduced sense of well-being and reduced hrqol from the side effects of drug treatment and lengthy hospitalizations. an inability to relax, heightened anxiety, muscle tension, pain, nausea and fatigue are just six symptoms this study seeks to address. they are said to be symptoms patients often experience and seek to manage by themselves (temtap & nilmanat, ) sleep disturbance and low mood are also issues for these patients and appear to fluctuate in correlation to the six subjective symptoms measured pre and post ht sessions. this pilot study measures the efficacy and acceptability of delivering ht (bio-field therapy) as a supportive “hands-on” intervention to patients residing in the bmtu over a four month period in . the results showed ht can be performed in bmtu setting with anxious and very sick patients with no adverse effects. it is feasible to recruit chtp’s to safely deliver treatments in a highly medicalised setting. three main areas have been identified in the literature review as lacking in previous studies wardell and weymouth ( ). therefore an effort was made to address practitioner training and experience, and this has been written about in chapter four, specific techniques, statistical analysis and discussion about a control group or suitable comparator follows in a discussion about the strengths and limitations of this study (anderson & taylor, ). specific techniques the four most frequently used ht techniques by the htp’s are; “field re-patterning”, “noel’s mind clearing”, “chakra connection and chakra energising” and the “siphon” (also known as a pain drain technique). these techniques have been described in detail in appendix i, along with the indications for their use. statistical analysis statistical analysis was undertaken using the spss programme and the results of the mean, standard deviation, standard error mean and two-tailed t-tests appear in table p. . to summarise these results it can be said that a statistical significance was seen in the mean pre versus post-relaxation score at p < . . patients showed a statistical difference in anxiety becoming less anxious which suggests a positive response, p < . . a statistical significance was seen in the mean pre versus post-muscle tension score p < . . patients scores showed they felt less pain post treatment p < . . these four symptoms; relaxation, anxiety, muscle tension and pain, reached statistical significance while fatigue p < . and nausea p< . didn’t quite reach the . level of significance. despite no statistical significance in the level of fatigue there was marked clinical significance in these symptoms which occurred for patients “one”, “two”, “four” and “nine”. most patients showed no measureable change in nausea. three patients were not experiencing this symptom at all and one patient felt more nausea after ht.a number of issues could be involved here and they were not examined. clinical significance applies to changes seen in some patients which suggest they experienced a greater response than the average response for most of the patients. so while there may not be enough of a change overall to make statistical difference for some people the response may be significant. this is an important phenomenon in the health field where drugs work well for some patients and create side effects and fail to improve conditions in other patients for example. strengths and limitations no other research has been found that gives htp’s freedom to choose (from within the ht curriculum), the techniques they felt best suited the patient presentation at each session. while it could be argued that such a variable contributes to poor quality research, it could also be seen as bringing greater authenticity to the delivery of ht as it would be delivered in a “real world”, naturalistic setting. what was standardised was all the patients were naïve to ht therapy and % had no expectation or belief in the effectiveness of ht. another strength is that only ht techniques were used as opposed to a common scenario where a combination of modalities such as guided imagery and music are incorporated into ht sessions. a combination of modalities was avoided in this study to reduce the number of confounding variables. rationale for encouraging experienced htp’s freedom to choose the techniques they deemed most beneficial for the patient at each interaction, was simply to allow the “healer to heal”. the art and science of healing touch cannot be reduced to a single “one size fits all” technique which previous studies have tried to do to in an effort to show scientific rigour. in the attempt is find the active ingredient much has been lost or discarded as ht has been stripped back to a mechanical process devoid of meaningful human interaction. looking back at the four ways the heart communicates with the body, p. - we begin to get a glimpse into the complexity of the human energy field. hands, heart and head create a synergistic biological dance that alters exponentially when another’s hands, heart and head connect. confounding variables other influences that could have had an effect on the results of this study are the placebo effect, the nocebo effect and the hawthorne effect. the timing of anti-emetic drugs and chemotherapy treatments was not examined but they certainly are worth considering as confounding variables. the placebo effect is an example of how the mind can control the body. whenever an intervention takes place, be it a drug therapy or cam therapy there is an expectation that something will occur, therefore the mind can create the effect which causes the biological change. patients given an inert substance or sugar pill can expect to get a benefit and so they do. this is testament to the body’s powerful internal resources and is a positive effect to be harnessed rather than a negative effect to be removed. studies of the placebo effect are not confined to pharmaceuticals and cam/integrative therapies. an example of the power of the placebo effect has also been demonstrated in the surgical field. a randomized, placebo-controlled trial on the effects of knee surgery for patients with osteoarthritis concluded the entire benefit of knee surgery was due to the placebo effect. improvements occurred as often in the “fake surgery” group as the surgical intervention groups (moseley et al., ). such findings can redirect the health dollar to areas where it will deliver the best value for money. funding research is an important step in this process. it is worth noting that % of the patients in this study had no belief in the effectiveness of ht. the nocebo effect is the power of negative beliefs and is the opposite of the placebo effect. it is a negative or harmful side effect to an inert substance. positive and negative beliefs impact health and life. “it is not our genes, but our beliefs that control our lives” (lipton, , p. ). the hawthorne effect can occur when someone responds in a certain way because they are being watched or perceive they are being watched. participants in this study were fully informed of the purpose of the study and were well aware when they were receiving ht treatments twice a week. they were being observed during each session by the htp in a partnership process rather than an observational one. despite no previous experience of ht they could have anticipated a beneficial effect and therefore the impact of the hawthorne effect is possible (burns & groves, ). the use of a small sample of convenience as opposed to a randomized sample and a control group means the results of this study cannot be extrapolated out to apply to any other group or the general population. this study was conducted over a four month period under a specific set of circumstances involving patients receiving different chemotherapy and drug treatment regimens which could not be accurately reproduced for a repeat study. it is acknowledged that results from this particular, unique population, were measureable, pleasurable and positive for this particular group and therefore affirmed the main research question. the research question asked, “can ht improve the patient experience in a group of hospitalised adults receiving intensive chemotherapy for haematological malignancies? evidence has been presented and data collected that suggest ht can improve the patient experience and it is feasible to deliver and acceptable for patients to receive. it appears to have improved the experience of this cohort and supported their health related quality of life (hrqol). supportive care in the form of a hands-on complementary modality is more likely than not to improve the patient’s subjective well-being measures. recommendations for future research the goal for this pilot study has been met by demonstrating the ability to recruit and retain participants and to receive a high rate of positive qualitative feedback from the patients and staff suggesting a ht programme is feasible to deliver, acceptable to receive and a positive patient experience. the best way to carry out future ht research may be to utilise a comparator that has a known benefit to measure against ht. gentile d et al. ( ) utilised ht and oncology massage as a comparator and kemper et al. ( ) used rest as a comparator against ht in paediatric oncology patients. others have used mock ht jain ( ) and wicking ( ), while jain et al. ( ) used guided imagery in conjunction with ht in post-traumatic stress disorder. hypnosis and acupuncture could also be useful comparators since there is some clear evidence as to the efficacy of these two modalities in certain conditions. a cooperation between healers and researchers such as in the bridg programme, https://helfgott.nunm.edu/building-research-across-inter-disciplinary-gaps-bridg/bridg-t - program/ would be most beneficial in moving the art and science of energy healing modalities into mainstream healthcare. the patient experience of receiving ht was able to be measured, and could be better measured in the future by using different tools such as the (patient reported outcome measures information system (promis) which has been developed specifically for cam and im modalities. promis is an nih-funded initiative established in as a cooperative network to develop and validate patient reported outcomes (pros) in global health, physical function, fatigue, pain, sleep/wake function, emotional distress, and social health. “currently, the promis network consists of research sites and three administrative centre’s that are developing pros in several new domains and performing validation studies of pros in new and existing domains.” https://commonfund.nih.gov/promis/index https://helfgott.nunm.edu/building-research-across-inter-disciplinary-gaps-bridg/bridg-t -program/ https://helfgott.nunm.edu/building-research-across-inter-disciplinary-gaps-bridg/bridg-t -program/ https://commonfund.nih.gov/promis/index anecdotal comments from patients and post treatment evaluations showed ht was a pleasurable experience to receive and it delivered positive subjective benefits to all but one patient, on one occasion. there are sustained and accumulative effects from repeated ht treatments that persist into the next hours and possibly days longer. certain patient conditions or patient groups respond in a predictable way to ht therapy. for example, chronic conditions are thought to respond best to more frequent ht sessions over a longer period of time. repeated ht treatments do not appear to reach a saturation point as the body is continually adjusting to its environment to find balance and harmony on all layers of it’s being; physical, mental, emotional and spiritual. patients who are frail or weakened by their disease or the treatment of it (in the case of chemotherapy), may require shorter ht sessions with minimal techniques being used. this is why it is appropriate to trust the healer to assess the patient’s dynamic presentation at each encounter and for the healer to be given the freedom to heal, even in a research setting if we are to achieve the best possible outcome for the patients highest good. conclusion many nursing theorists, including jean watson believe that human care can only be effectively practiced and demonstrated when there is an interpersonal relationship between the patient and the nurse. current nursing practice has become very task orientated and reliant on technology to the point that patients experience very little physical touch. this state is reflective of western society in general. in interviews with a group of self-identified holistic nurses, slater ( ) found the one concept expressed by every nurse was “presence”, using oneself as the primary therapeutic nursing tool. described as “willing to be with the patient in silence, non-judgemental, without an agenda and most importantly allowing time and space to heal. slater states, “presence appears to be the hallmark of a holistic nurse.” clearly nurses can be an instrument of healing and many seem to recognise this on some level. however in the staff evaluation feedback it was the clinical psychologist who had the most difficulty relating to the term “healing touch” and felt uncomfortable using it around patients with cancer. “i really struggle with the name-“healing touch” being used with cancer patients. it causes confusion from the outset about its purpose alongside medical treatments. patients have reported that they don’t like it being called this” psychologist overall patients appeared to appreciate the supportive, relaxing ht interventions and none withdrew from the study. based solely on this study of participants one could not conclude that ht is consistently effective or ineffective but it does show clinical significance and did detect some statistical significance in four out of the six symptoms of interest. this was also the case in there was a reduction in anxiety, muscle tension and pain and an increase in the state of relaxation. while there was no statistical difference for the symptoms of fatigue and nausea individual patients did report significant clinical benefit. eighty-seven percent of participants found ht to be quite helpful or very helpful and just one patient found the duration of the session too long. previous research designs may have delivered an inadequate dose of ht to elicit the greatest potential benefit from each exposure. this research suggests there is an accumulative effect that takes place and does not reach saturation over time. danhauer et al. ( ) found ht was well received by patients hospitalised with leukaemia and recommended more closely examining the optimal dosage. wilkinson et al. ( ) carried out a similar pre, post-test design comparing three treatment conditions delivered to patients. each session was thirty to forty minutes long and feedback from both the participants and the practitioners was that this timeframe was too short. fitzhenry et al. ( ) recommended increasing the “dose” of ht to forty five minutes twice a week instead of once a week and strengthening the effect of the intervention by having the same practitioner deliver each session to strengthen the patient provider relationship. those recommendations served to inform the design of the current study. this research has shown a larger study is feasible and that ht can be seamlessly incorporated into the hospital setting for patients with haematological disorders without interfering with ward routines. demands on nurses time does not allow them to spend the “hands-on” quality time with patients as they would like to. one nurse commented to her patients ht practitioner; “it was almost a relief to know your patient was receiving this special one on one, quality, time when i couldn’t be with him as much as he needed. i wish all of my patients took the opportunity to receive this nurturing care, i could see how relaxed the ones who did do it were.” the results have shown that ht can be a positive contributor to wellbeing in the bone marrow transplant unit (bmtu) and that ht therapy could be offered to all patients with minor changes to delivery and funding arrangements. further research into the duration of symptom relief and longer term effects of ht are warranted. a key finding suggests that previous research designs may have delivered an inadequate dose of ht to elicit the greatest potential benefit from each exposure. this research suggests there is an accumulative effect that takes place and does not reach saturation over time. special acknowledgement the author would like to thank the patients and family members who participated in this pilot project. references anderson, d. m., loth, a. r., stuart-mullen, l. g., thomley, b. s., & cutshall, s. m. 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( ). a randomised controlled trial of the effects of the energy-based complementary therapy of healing touch on the functional helth status of community-dwelling single older women (doctoral thesis phd, james cook australia, townsville, australia). retrieved from http://researchonline.jcu.edu.au/ / wilkinson, d., knox, p., chatman, j., johnson, t., barbour, n., myles, y., & reel, a. ( ). the clinical effectiveness of healing touch. journal of alternative and complementary medicine (new york, n.y.), ( ), - . retrieved from doi: . / wong, j., ghiasuddin, a., kimata, c., patelesio, b., & siu, a. ( ). the impact of healing touch on pediatric oncology patients. integrative cancer therapies, ( ), - . retrieved from http://onlinelibrary.wiley.com/o/cochrane/clcentral/articles/ /cn- /frame.html youngson, r. ( ). how to up-regulate compassion in healthcare. zelano, c. ( ). nasal respiration entrains human limbic oscillations and modulates cognitive function. journal of neuroscience, , - . https//doi.org/ . / http://onlinelibrary.wiley.com/o/cochrane/clcentral/articles/ /cn- /frame.html http://onlinelibrary.wiley.com/o/cochrane/clcentral/articles/ /cn- /frame.html zick, s., & benn, r. ( ). bridging cam practice and research:teaching cam practitioners about research methodology. alternative therapies in health and medicine, ( ). zimmerman, j. ( ). laying-on-of-hands healing and therapeutic touch. a testable theory. newsletter - bio-electric magnetic institutes, ( ), - . appendices appendix a information pack, consent form, information for participants participation consent form project title: the effectiveness of healing touch, a bio-field therapy providing relaxation and supportive care, for hospitalised patients receiving treatment for haematological disorders i agree that i have been given a full explanation of this project i have read the information sheet and have had an opportunity to ask questions about the study. i am taking part in this study at my own free will. i understand what will be required of me if i agree to take part in this project. i understand that my participation is voluntary and that i may withdraw at any stage without penalty. i understand that any information i provide will be kept confidential to the researcher and that any published or reported results will not identify me. i understand that all data collected about me for this study will be kept in locked and secure facilities at the bone marrow transfusion unit or the university of canterbury health centre and will be destroyed after five years. i understand that i am able to receive a report on the findings of this study. i have provided my email details below for this. i understand that if i require further information i can contact the researcher, wendy risdon or supervisor kate reid. if i have any concerns i can contact the chair of the university of canterbury human ethics committee private bag christchurch (human-ethics@canterbury.ac.nz) by signing below, i agree to participate in this research project. name: _________________________________________ date: __________________________________________ signature: ______________________________________ email address: ___________________________________ information for participants dear my name is wendy risdon and i am currently studying towards a master’s degree in health science at the university of canterbury. as part of my study i am undertaking research into the value of using “healing touch” (ht), a relaxing, hands-on therapy, to provide complementary care, for patients hospitalised with haematological disorders. i want to understand, if the quality of life, of people who are hospitalised for a long time, because of severe illness improves if they have therapies that involve gentle touch. i am specifically looking to understand the effect of one particular therapy: “healing touch.” this therapy is a gentle, nurturing hands-on or just above the body, technique used in many hospitals in different countries. it is reported to be safe for all ages and conditions. previous research about patient quality of life, in haematological disorders has focused on, the management of side effects from medical treatment or the physical symptoms of the illness. very few studies have looked at the overall benefit of complementary care, like ht or focused on the psychological effects experienced by individuals, even though it is well documented that patients commonly experience chronic stress. an initial interview will be completed, to gain relevant background information, after the consent to participate has been signed. if you want to participate, a registered ht professional will give you once or twice weekly touch therapy sessions, in your room for up to minutes at a time. you are not required to do anything during the sessions, you may choose to close your eyes and rest. this takes place with you fully clothed, in the afternoon or evening. you will also be given questionnaires to fill out within days after each session. these will take approximately minutes to complete. i am interested in your views, so staff will not be able to help you do this. you can ask family or friends for assistance in filling out the questionnaires. the results of the project may be published, but you can be assured of complete confidentiality of the data gathered in this investigation: your identity will not be made public. to ensure anonymity and confidentiality, any information that is collected throughout the pilot project will be securely stored in a locked filing cabinet in a lockable room at the bmtu and destroyed after the required time of the university, of years. participant’s names and any other details that clearly identify the participants will not be used to maintain confidentiality. a master’s thesis will be written at the completion of this research. this is a public document and it will be available through the uc library. you may receive a copy of this by contacting the researcher by email or phone when it is available. the project is under the supervision of kate reid who can be contacted at kate.reid@canterbury.ac.nz. she will be pleased to discuss any concerns you may have about participation in the project. if you want to talk to someone who isn’t involved with the study, you can contact an independent health and disability advocate on: phone: fax support ( ) email: advocacy@hdc.org.nz you can also contact the chair of the university human ethics committee by phone ( ) or by email: at human-ethics@canterbury.ac.nz i wish to invite you to participate in this study. all participants are able to withdraw from the study up until the time of data analysis by texting or emailing wendy risdon. if you agree to participate in the study, please contact the researcher by txt or phone to arrange a time to meet, which is convenient for you. at this time it is possible to answer any questions or concerns that you have before signing the consent form and agreeing to participate in the study. thank you for considering participating in this study. wendy risdon (registered nurse and masters research candidate) phone: email: wendy.risdon@canterbury.ac.nz kate reid (supervisor) email: kate.reid@canterbury.ac.nz this project has been reviewed and approved by the university of canterbury human ethics committee, and participants should address any concerns to address: the chair, human ethics committee, university of canterbury, private bag , christchurch email: human-ethics@canterbury.ac.nz appendix b initial intake interview form appendix c consort flow diagram consort flow diagram assessed for eligibility (n= ) not meeting inclusion criteria (n= ) excluded (n= ) declined to participate (n= ) randomized (n= ) allocated to intervention (n= )  received allocated intervention (n= )  did not receive allocated intervention (n= ) enrolment allocated to intervention (n= )  received allocated intervention (n= )  did not receive allocated intervention because there was only a single intervention allocation allocation lost to follow-up (n= )  deceased post trial discontinuation intervention (n= )  deceased during trial analysed (n= )  excluded from analysis (n= ) analysis follow up appendix d healing touch session documentation appendix e patient post treatment questionnaire/ modified fact leu, qol appendix f programme evaluation for ward staff. questionnaire results . what is your impression of the usefulness of this service for patients? “good feedback from patients, probably some who said “no” may have benefited if (they) understood more” “very useful, feels good to be able to offer something holistic” “great service, would be good if it could continue” “it’s a fantastic way for pts to focus on something helpful and good during their treatment, which can be awful” “mixture, some have found it very helpful” “most of the patients enjoyed it” . what worked well? “patients felt more relaxed after each session” “a different non-medical approach- time out from the medical world” “giving all patients the opportunity to participate or think about participating. having the sessions on the ward so pts didn’t have to go too far. asking staff to discuss the option with patients” “helped patients relax and be more mindful of their own mental health” “ease of referral” . what were the challenges? “timing” “trying to engage more pts and find the time to attend” “unsure” “explaining its role/purpose to patients, other than giving them the leaflet” “to recruit new people as they were unaware of the idea of “healing touch” . what could be improved? “it could be better if we have more resources available” “a name change! focus more on calmness and relaxation maybe?” “possibly advertise the sessions more so all patients are aware and have the opportunity. unsure what the sessions consisted of so cannot comment on further improvements” “when service in progress, patients often interrupted as unaware they were having ht especially in room ” (multi bed unit) . do you have any recommendations for the future delivery of complementary therapies” “privacy- signs, healing touch in progress” “would be better if complementary therapies had a greater presence on the ward and incorporated into treatment regimens” “i really struggle with the name-“healing touch” being use with cancer patients. it causes confusion from the outset about its purpose alongside medical treatments. patients have reported that they don’t like it being called this” “making more resources available readily and more sensible timing” . did you experience a healing touch session when it was offered to staff? if so how was it beneficial to you? a total of staff had sessions- benefits expressed in writing were; “very relaxing, almost assisted into a meditative state” “i wanted to go however the sessions were on when i wasn’t on or during a busy shift. i couldn’t get to a session unfortunately” i felt so relaxed after the session not only mentally but physically as well” “mixed (feelings) - was a relaxing setting” three staff chose not to have healing touch most common reason was “i did not want to-not ready, lack of time” appendix g professional protocol for healing touch practitioners working in the bone marrow transplant unit and “aon” indemnity insurance, application for non-nurses appendix h code of ethics/standards of practice for healing touch practitioners appendix i techniques used by ht practitioners – the four most frequently applied healing touch techniques in this study are described below. field re-patterning definition a technique that can be used to address the entire body or specific areas to assist in moving one’s energy to an increasingly balanced state. when moving hands through the whole field: . move the hands through the field - inches above the body. work is done in the etheric layer. . starting at the head, brush down and away from the body in a gentle and calming motion, sweeping and dropping any energetic debris out of the field. the pattern of energy flow is from head to foot: movement returns the cleared energetic debris to universal energy. . repeat these sweeps down the body to the feet until field is smooth and symmetrical. indicating the field is re-patterned. when addressing a specific area: . move the hands through the area above the disruption or blockage. if there is more than one area to address, begin with the upper ones. the pattern of energy flow is from head to foot. . move the hands close above the area using a gentle cupping and pushing motion. to sweep away blockages holding: use after completing above activities . hold hands on or above the affected part of the body until the flow is re-established. to stimulate energy flow . when addressing the entire field, place hands where convenient or where the patient directs. energy flows to area of need. avoid the crown until your personal skill set and vibration are highly developed. application field re-patterning can be used to address chronic discomfort or injury within specific areas of the body (eg, shoulders, neck or fingers). can also be used on the whole field to break up areas of congestion seen with conditions such as depression, anger, anxiety, agitation, stress, burns, bites, pain, headaches, and nausea. (anderson, anselme, & k, ) p. noel’s mind clearing implementation , cup hands under the occipital ridge, fingers on each side of the spine. apply gentle pressure with fingertips. opens entire chakra system. . cup the parietal ridge midway on the back of the head with fingers parallel and thumbs resting atop the fontanelle. normalizes blood pressure and connects with the heart. . place the little fingers in the indentations above the ear and align the remaining fingers up the head toward the crown, run energy between the hands until undulating energy is felt as a pulse in both hands. balance right and left hemispheres of the brain. . place three fingers on either side of the larynx. balances thyroid and parathyroid. . place fingers of one hand on the back of the neck (c to c ) and fingers of the other hand on the brow from the hairline. connects hindbrain and cerebral cortex (helps re-establish impulse inhibition). . place fingers of each hand on brow with little fingers at the inside of the eyebrow and the index finger at the peak of the hairline. influences inner sight. . move little fingers of each hand to the outer aspect of the eyebrows, leaving the index finger at the peak of the hairline. influences physical vision. . gently stroke across the brow, starting at the bridge of the nose to the hairline. . starting at the edges of the eyebrows, gently brush over the cheeks down to the chin releases stress in the temporomandibular joint (tmj). . cup the jaw with fingers pointing toward the thyroid. relaxes the jaw and energizes area. . place the left hand over the heart chakra and the right hand on the side of the head with the thumb pointing toward the crown. addresses pineal gland, pituitary gland and hypothalamus. . place both hands over the heart chakra and brush from heart chakra up and out over the shoulders. gentle completion. be mindful that hands are non-intrusive. siphon (pain drain) definition an energetic siphon using gravitational gradient to create an energy flow, draining or drawing off congested energy from a superior location to a lesser congested, inferior location. implementation . place the left hand over the congested area. the left hand is the receiving hand. the right hand is the sending hand. . place the right hand inferior to the congested area uses gravity to accentuate the intensity of the flow. . pump the right hand as needed to start the flow and continue to siphon until the flow subsides. indication of gradient equilibrium. . reverse the hand positions and raise the left hand above the body. refills drained area with universal healing energy via the energy siphon mechanism. application siphon reduces congested energy, such as pain, oedema, inflammation, infection, or emotional congestion, such as grief, anger, fear and shame. (j. g. anderson et al., ) p. chakra connection and chakra energising implementation in sequence, the minor chakras of the limbs and major chakras of the body are held using both hands. one hand is placed over the lower chakra while the other is placed over the one above it. the technique is full body, moving from the feet to the head. both hands are needed to establish the flow between chakras. when the flow feels free and unencumbered, the next connection can be made. the chakra connections are made in the following sequence: . right foot to knee; knee to hip . left foot to knee; knee to hip . hip to hip . root to sacral . sacral to solar plexus . solar plexus to spleen . solar plexus to heart . heart to thymus . right hand to elbow; elbow to shoulder . left hand to elbow; elbow to shoulder . shoulder to shoulder . thymus to throat . throat to brow . brow to crown . crown to transpersonal point (with left hand’s palm facing away from the crown) (j. g. anderson et al., ) p. appendix j te komiti whakariti /māori consultation letter appendix k university of canterbury ethics committee approval appendix l canterbury district health board general manager sign-off appendix m visiting health professionals agreement access & procedures acknowledgement form for a visiting health professional (clinical) at canterbury district health board an agreement between canterbury district health board (“cdhb”) and ___________ (health professional) date ________ there are two main types of visiting health professional ~ “observer status” for health professionals who are merely visiting the department in an observational role, this form should be shown to the visitor and they should sign it as evidence that they are conversant with the basic requirements of canterbury dhb. since they are not undertaking any direct treatment of patients, section g of terms and conditions does not apply and should be crossed out. clinical directors and service managers should countersign the form and retain it on file. “active status” for health professionals who may be working in clinics, on wards and/or assisting or performing various procedures that involve patient contact. delegated authority for such activity must be obtained from the relevant clinical leader and appropriate authorising officer (see p. ). section g of terms and conditions applies. the individual concerned should have a relevant practising certificate and indemnity insurance (when necessary), and must submit copies of these when signing the visiting health professional form. copies of the documentation should be held in the relevant department and by the appropriate authorising officer (see classification p. ). all visiting health professionals who will be having patient contact must be assessed by the divisional health and safety officer (for mrsa screening requirements) whose signature must be obtained on this form prior to any patient contact. modular short form videos for library instruction – in the library with the lead pipe 		 		 				 			 				 					 						skip to main content 						 					 				 				 					 						chat .webcam					 				 				 			 		 		 		 		 			 				 				 					 											 					open menu	home 	about 	awards & good words 	contact 	editorial board 		denisse solis 	ian beilin 	jaena rae cabrera 	kellee warren 	nicole cooke 	ryan randall 	emeritus 	announcements 	authors 	archives 	conduct 	submission guidelines 	lead pipe publication process 	style guide 	search 				 				 					home 	about 	awards & good words 	contact 	editorial board 		denisse solis 	ian beilin 	jaena rae cabrera 	kellee warren 	nicole cooke 	ryan randall 	emeritus 	announcements 	authors 	archives 	conduct 	submission guidelines 	lead pipe publication process 	style guide 	search 	 		 				 			 		 		 	 	 	 			 			 			 				 							 	 		 	 			 		 		 			 				 					 										 						 						 	 				 		 		 			 				 					 					oct 					 				 				 					cindy craig					/ comments 				 											modular short form videos for library instruction 								 					 				 				 			 			 		 			in brief expensive software isn’t necessary to create effective tutorials. quick, unedited tutorials created on social media, such as on instagram or snapchat, may be more effective. these short form videos (sfvs) combine the advantages of animated gifs with the advantages of screencasts: modularity, repetition of steps, and animated visuals supported by pertinent audio. sfvs are cheap (or free) and easy to make with materials libraries already possess, such as internet access, computers, and smartphones. they are easily replaceable if the subject changes. the short form forces librarians to get right to the point. finally, sfvs are easily disseminated on social media and have the potential to go viral. by cindy craig introduction in this article, i describe how i came to use social media videos to teach library skills and abandon the screencasting format. i describe some key learning theories for effective tutorials and how various tutorial formats fit those theories. finally, i provide some tips for making tutorials in instagram or snapchat. background screencast tutorials, such as those made with camtasia studio and adobe captivate, have become a staple for instruction librarians. over the course of my academic library career, i’ve made dozens of screencast tutorials on a variety of topics such as avoiding plagiarism, using subject databases, printing from library computers, and reserving study rooms. the advantage of video tutorials is their ability to provide library instruction around the clock. and with enrollment in online courses at an all-time high, online instruction is more important than ever. however, there are significant drawbacks to screencast tutorials. one is that they can be difficult to make. if your library has the budget for a professional screen capture program, the learning curve for using it may be too high. also, when a vendor decides to change a database platform a week before the new semester starts, your carefully made tutorial is instantly stale. another, and perhaps more significant, issue is: are students actually using online tutorials? in one survey of undergraduates by colosimo and kasuto ( ), one third reported they would not watch screencast tutorials for a variety of reasons, among them “no need,” “no time,” and “no interest.” this finding points to some worrying issues regarding online tutorials (and information literacy instruction in general). many undergraduates, especially those new to college level research, tend to overestimate their information literacy skills, a phenomenon known as calibration (yates, ). another is that today’s students are used to a high level of human-centered design in their computing devices. library tutorials seem clunky and confusing compared to the seamless app interfaces they take for granted on their mobile phones and tablets. students will ignore screencasts if they are over three minutes long, take too long to load, don’t play well on a mobile device, or are not available at the point of need (plumb, ; slebodnick & riehle, ). how can instruction librarians overcome these barriers and create tutorials that are effective and engaging? two learning theories may be of help: cognitive load theory and dual coding theory. key learning theories cognitive load theory asserts that, for learning to take place, the demand on working memory must be minimized. working memory, which is our mind’s temporary sketchpad, can only hold about seven units of information for about a maximum of twenty seconds. information not encoded into long term memory disappears from one’s mind (miller, ; peterson & peterson, ). think about being introduced to someone new, only to forget their name moments later. researcher john sweller ( ) found that novice learners, such as undergraduates, are especially vulnerable to cognitive overload. he recommends decreasing cognitive load by putting smaller bits of information together into chunks. for example, a seven-digit phone number is easier to remember because it is clustered into two chunks. ideally, tutorials would demonstrate step-by-step how to perform a task, known as a worked example. a library tutorial about a database, for example, would show each step to finding and using the thesaurus feature. dual coding theory, developed by allen paivio ( ), asserts that students learn more effectively if their visual and verbal channels are engaged at once. pairing words and images in a meaningful way, such as with a mnemonic device, decreases the demand on working memory. in a screencast tutorial created in camtasia, for example, one could use the callout feature to highlight a key concept, such as the word “abstract”, and pair it with footage of a database record. even better is to pair audio narration with moving images, since only using visual elements can still overwhelm working memory. think about the extra effort it takes to watch a film with subtitles. choosing the best tutorial format taking these learning theories into account, one might think the best choice for tutorials would be the screencast, since it combines moving database footage with audio narration. my own research found that this was the case. i compared two tutorials on a biology database: one a screencast featuring audio narration and callouts of important concepts, the other a series of web pages with static screenshots that students could click through. in a follow up quiz, the students who watched the screencast scored higher than the other group (craig & friehs, ). however, a study by lori mestre found the opposite. most of her students also preferred using a tutorial with static screenshots than watching a screencast. their reasons included: 	ability to quickly return to a section explaining a step. 	ability to skip around sections instead of watching a video beginning to end. 	ability to get the big picture by scanning the whole page, then returning to individual steps. 	the screencast was tedious to sit through. the few students who preferred the screencast liked the mouse movements and the highlighting. they also found the voice narration explaining each step to be helpful. so, considering these conflicting findings, i wondered what format would combine the best aspects of a screencast with the best parts of a static web page tutorial. that’s why i was intrigued when i came across a article in lead pipe by karl suhr about using animated gifs for library tutorials. suhr noticed that animated gifs, which he considered antiquated and distracting, had recently made a comeback as a storytelling device in the form of jokes and memes. as information literacy instruction is also a form of storytelling, animated gifs might be a good format for library tutorials. suhr’s reasons included: 	a group of pictures gives immediate feedback as to how much information is being conveyed. a screencast, on the other hand, doesn’t give much of a clue as to what the user is committing to. 	pictures have natural break points between steps. 	a series of images enhances closure, which is the phenomenon of observing the parts but perceiving the whole. comics artists employ closure by carefully sequencing panels and knowing what to keep “off-screen.” 	a series of animated gifs combines closure with the dynamic element of video. suhr recommended making a series of animated gifs displayed in a sequence on one screen. this could help users understand “a multistep process that depends on properly executing the one before it,” such as searching for a book in the library catalog. animated gifs are also a good choice for practical reasons in that they are easy and cheap to make and don’t require a broadband connection to view. trying short form videos at that point, i decided screencasting might be dead and to switch to another online tutorial format. i wanted to combine the best aspects of animated gifs and camtasia videos. also, i wanted to reach students through their smart phones, which were seemingly ubiquitous. so, i turned to social media. i decided to try vine as a format for library tutorials. at the time, vine was still a very popular video sharing service that at its peak had million users. the videos were only six seconds long and played in a continuous loop. the constraints of this format enhanced creativity by requiring users to tell stories with quick cuts and non-sequiturs (hern, ). some users gathered millions of followers by becoming masters of short-form storytelling, such as gainesville, florida native thomas sanders, who, incidentally, developed a comic series called “storytime” (fenn, ). i planned out a series of vine videos showing each step in a research process. 	step one/video one: locate the psycinfo database on the psychology libguide. 	step two/video two: perform a search and browse the records. 	step three/video three: use psycinfo’s term finder to find relevant results. a colleague, april hines, and i created this series using her smartphone and my computer screen. april narrated the videos while i clicked through the relevant screens. she approached the narration as an undergraduate student browsing through the library’s website doing research. for instance, in the first video, she says “i need articles on pet therapy” as a mouse cursor clicks on the psycinfo link. the second video shows the list of psycinfo results as she says, “these are all about pet scans. am i using the right terms? let me try the term finder.” the cursor clicks on the term finder link at the top of the screen. the third video shows the thesaurus terms for pet therapy. april’s voice says, “oh, animal assisted therapy” as the cursor clicks on the thesaurus term. as a new list of records pops up on the screen, she says, “much better!” this process was much more difficult to coordinate than we thought and took several tries to get right. however, we were able to load the videos onto a vine account. i also made a libguide and embedded each video so they would appear in order on one screen. users could easily scan the whole series, view them in order, or skip around to different steps. to assess the new videos, april and i showed them to a focus group of students from our library’s booster club. these students have helped with assessing library services in the past, so they were eager to help. i asked the students to view the psycinfo tutorial series on their own mobile devices, then attempt to search the database for an article. they had trouble navigating to the libguide where i embedded the videos. it was much easier for them to watch the videos on vine. the students were able to follow the psycinfo tutorial series to the end and successfully locate articles, but they needed to watch the videos over and over. the students found the narration useful and they liked that the videos automatically repeated. we had planned a second focus group, but the vine service was discontinued and our videos were no longer accessible. april and i recreated the series, as well as some new tutorials, using instagram and snapchat. these programs have a little more flexibility than vine. instagram allows second videos while snapchat videos are seconds maximum. snapchat also allows you to add annotations and captions, which makes videos more accessible for users who cannot hear audio narration. in one of our videos showing how to access the list of project starter databases, we added an annotation at the bottom showing the library’s web address. instagram has the boomerang app, which bounces a two-second clip back and forth. in one of our videos, we drew an arrow to the off-campus access link on the library’s home page. the boomerang app moves this arrow back and forth, highlighting the link. the full series of videos is located here: https://www.instagram.com/uflibrarywest/. we showed this second series to a different group of library ambassador volunteers. this group was also able to successfully use psycinfo after viewing the video series. however, some of their responses pointed to some possible challenges that instruction librarians should keep in mind. one is that the library ambassadors, already avid users of the library, were very confused by the library’s website. they were unsure how to even find the library’s home page without googling it. once they were at the home page, they were unsure how to find and use databases appropriate to their subject areas, often defaulting to the favorite of professors everywhere, jstor. one student demonstrated calibration when she claimed to not need library instruction, but showed the most surprise at the skills she learned from the videos. at this point, my use of social media tutorials is still in the testing phases and has not yet been adopted by my library. however, i believe, based on my analysis and on focus group feedback, that this format has great potential to teach information literacy skills. going forward, i plan to further explore how best to deliver short form video tutorials so that they are available to students at the point of need. based on what i’ve learned so far, here are my recommendations for best practices: 	carefully map out the research process from start to finish. don’t assume users will even know how to find your library’s website. 	break up the research process into smaller chunks. think about where users are likely to get stuck or confused. your videos should help users over these hurdles. 	if you plan to capture screens from a database, have a partner click through the screens while you hold the smartphone or tablet. 	as you film, add simple narration to clarify what is being shown. avoid distracting music or sound effects. 	use captions to make your videos more accessible and to reinforce the message. conclusion the best short form videos adhere to dual coding theory in that they combine visuals with just the right audio for immediate impact. also, the brevity and repetition of short form videos require little demand on working memory. short form videos on social media are a part of what juhlin et al. ( ) call the new video culture, which has been made possible by cheap video production tools and high bandwidth. camera phones have replaced digital cameras for taking photos and videos in everyday use. the image quality of camera phones has increased to a level of quality that was only available to professionals just a few years ago. this has led to video consumers also becoming producers and sharers of content, or “prosumers.” social media sites provide outlets for prosumer content. the result is a dynamic and diverse video medium that has become a form of dialog. in this new medium, spontaneity and authenticity of videos are more important than careful editing, which helps explain the enormous appeal of services like vine, snapchat, and instagram. acknowledgements: thank you to my internal reviewer, bethany messersmith, my external reviewer, renee romero, and publishing editor, sofia leung for your support and helpful advice. special thanks to my colleague april hines for her assistance with creating the videos and with conducting the focus groups. special thanks to curt friehs, my colleague and longtime collaborator on research with online tutorials. and thank you to lori mestre and karl suhr, whose articles inspired me to take a new direction with online tutorials. references colosimo, a. l., & kasuto, e. ( ). library video tutorials to support large undergraduate labs: will they watch? issues in science and technology librarianship, . craig, c. l., & friehs, c. g. ( ). video & html: testing online tutorial formats with biology students. journal of web librarianship, ( ), - . fenn, m. ( ). thomas sanders’ bold, gate-crashing comedy shines in vine compilation. retrieved from: https://www.dailydot.com/unclick/vine-thomas-sanders-story-time/ hern, a. ( ). vine’s co-founder colin kroll: ‘six seconds just feels right’. retrieved from: https://www.theguardian.com/technology/ /jan/ /vine-video-flickr-colin-kroll juhlin, o., zoric, g., engstrom, a., & reponen, e. ( ). video interaction: a research agenda. personal and ubiquitous computing, ( ), - . mestre, l. s. ( ). student preference for tutorial design: a usability study. reference services review, ( ), - . miller, g. a. ( ). “the magical number seven, plus or minus two: some limits on our capacity for processing information”. psychological review. ( ), - . doi: . /h . paivio, a. ( ). coding distinctions and repetition effects in memory. in k. w. spence (ed.), the psychology of learning and motivation (pp. - ). new york: academic press. peterson, l., & peterson, m. j. ( ). short-term retention of individual verbal items. journal of experimental psychology, ( ), - . http://dx.doi.org/ . /h plumb, t. k. ( ). creating electronic tutorials: on your mark, get set, go! journal of electronic resources librarianship, ( ), - . slebodnik, m., & riehle, c. f. ( ). creating online tutorials at your libraries: software choices and practical implications. reference & user services quarterly, ( ), - , . sweller, j. ( ). cognitive load theory, learning difficulty, and instructional design. learning and instruction, ( ), - . suhr, k. ( ). using animated gif images for library instruction. retrieved from: http://www.inthelibrarywiththeleadpipe.org/ /using-animated-gif-images-for-library-instruction/ yates, j. f. ( ). judgment and decision making. englewood cliffs, nj: prentice hall. 			 						 				information literacy, online tutorials, social media 			 					 	 						 												 						 							creating connections: how libraries can use exhibits to welcome new students 							the innovation fetish and slow librarianship: what librarians can learn from the juicero 							 						 						 												 						 	 		 responses	 		 	pingback : instagram and snapchat videos as short-form library tutorials – the a j lawbrarian blog 	 	 		 		 			 				antonio dias figueiredo 				 					 					 						 						 – – at : am						 					 				 			 							 					 			 			 			 				thanks for such a nicely argued text and inspiring research. i’ve just recommended it on my facebook page (in portuguese). my only humble comment is that there may be some contradiction between your recognition that “today’s students are used to a high level of human-centered design in their computing devices” and your claim that “spontaneity and authenticity of videos are more important than careful editing.” as ios now lets you produce screencasts for free, i could imagine a two step process where you would: ( ) capture the screens from the database on ios ; ( ) edit the resulting video on a cheap but powerful ios editor, such as pinnacle studio pro, which lets you zoom on to the specific spots of the database screen. this would get round the unfriendly interfaces of present day databases and improve (actually, make possible) legibility. 							 		 	 	 	 		 		 			 				cindy craig 				 					 					 						 						 – – at : pm						 					 				 			 							 					 			 			 			 				hello antonio! thank you for your thoughtful comments. (and thank you for your kind comments on my article in your facebook post!) i should clarify that, while students demand high quality from their computing devices, they don’t necessarily expect the content to be high quality. pinnacle studio pro is $ . , which, while cheaper than camtasia and captivate, may still be too costly for some libraries. the screen recording feature on ios , used on its own, may be an excellent tool for making tutorials, with the caveat that the tutorials remain simple and brief. i’ll give it a try! 							 		 	 	 	 		 		 			 				antónio figueiredo 				 					 					 						 						 – – at : pm						 					 				 			 							 					 			 			 			 				hello cindy! thanks for your kind reply. i was mentioning pinnacle studio pro for ios, which works beautifully on the ipad. in europe, it costs . euros. in the us it should cost between $ . and $ . . i’ve used it in the past and was genuinely impressed. the learning curve is a little steep at first, but if you follow a minute tutorial and get used to it, it’s a breeze. assuming that whoever produces an sfv is likely to produce some more, it might make sense. this is, of course, a mere suggestion by someone who loved your project and would like to help. 							 		 	 	 	 		 		 			 				cindy craig 				 					 					 						 						 – – at : pm						 					 				 			 							 					 			 			 			 				i found pinnacle studio pro in the apple store for $ . usd! oooo….i’ll have to try it now! 							 		 	 	 	 		 		 			 				michael jones 				 					 					 						 						 – – at : am						 					 				 			 							 					 			 			 			 				hello cindy, thanks for sharing about your interesting work. i too have been experimenting with the use of video for delivering tutorials in recent years so it was really good to hear about your approach. i’m also very interested in how social media is used by academic libraries and have published some research that i carried out into its effectiveness in communicating with users in uk further education. how have you found social media as a platform for disseminating your videos? do you feel like you are able to reach a large enough portion of the student population via this medium? 							 		 	 	 	 		 		 			 				cindy craig 				 					 					 						 						 – – at : pm						 					 				 			 							 					 			 			 			 				hello, michael! thank you for your comments. i’m interested in reading your research. at this point, i feel more study is needed to determine the most effective way to disseminate video tutorials. one challenge is to choose the right social media platform, since they are always changing! the students i spoke to gravitated towards different platforms for different uses and audiences. 							 		 	 	 	 		 		 			 				michael jones 				 					 					 						 						 – – at : am						 					 				 			 							 					 			 			 			 				hello cindy, thanks for the reply. if you fancied glancing through my research you can find it here: https://doi.org/ . / . if you don’t have access to jolis then there’s an earlier draft available via northumbria university’s open access research portal: http://nrl.northumbria.ac.uk/ / /article.pdf i completely agree that choosing the right social media platform is very difficult. part of the problem is you’re never going to find one platform that all of your library users are on and so it becomes impossible to offer consistent delivery across the student body. that’s why we chose to disseminate our videos via tutor sessions which all students will attend once a week and so we can be sure that pretty much all of our students are receiving some basic information literacy training via this means. obviously, this depends on the nature of your institution and whether this kind of regular contact with students is available. 							 		 	 	 	pingback : the year in learning: recommended l&d articles from 	 		 						 										 				 				 				 			 			 	 		 			 		 				 	 				 		 	 		 	 		 				 			 				 										 this work is licensed under a cc attribution . license. issn - 				 										about this journal | archives | submissions | conduct 				 			 		 				 	 	 dalton transactions dynamic article links cite this: doi: . /c dt g www.rsc.org/dalton perspective radiometallated peptides for molecular imaging and targeted therapy joão d. g. correia, antónio paulo, paula d. raposinho and isabel santos* received th november , accepted th january doi: . /c dt g in developed countries, cancer is the second leading cause of death, being only surpassed by cardiovascular diseases. to develop tumor-targeted tools to localize and treat cancer at an early stage is a multidisciplinary area fuelled by the convergence of biology, medicine, chemistry, physics and engineering. chemists, in particular, play a critical role in this effort, as they are continuously challenged to use innovative chemical strategies to develop ‘smart drugs’. the in vitro observation that peptide receptors are overexpressed in certain tumors, as compared to endogenous expression levels, has prompted the use of such receptors as targets and the design of radiolabelled peptide-based tools for targeted nuclear molecular imaging and therapy. such approach has gained increased interest over the last two decades, driven in particular by the success of octreoscan r© and by the increasing knowledge concerning overexpression of regulatory peptide receptors in tumor tissues. selected peptides that target a variety of disease related receptors are in place and have been labeled with different radiometals, using mainly the bifunctional approach. this review begins by summarizing some relevant aspects of the coordination chemistry of the metals studied for labeling peptides. then, we provide an overview of the chemical strategies explored to improve the biological performance of different families of radiometallated peptides for nuclear molecular imaging and/or targeted radionuclide tumor therapy. introduction despite the advances in medical sciences, cancer is still a lead- ing cause of death worldwide. the world health organization reported that, in developed countries, cancer is the second leading cause of death, being only surpassed by cardiovascular diseases. nevertheless, during recent decades, remarkable insights into the cell and molecular biology of malignancies has been acquired, and a myriad of differences in the biological make-up of cancers compared with their healthy-tissue counterparts have been catalogued. – the increasing knowledge generated by such achievements has led to the identification of several biomarkers, and some of them have been considered as potential targets for in vivo molecular imaging and/or therapeutic purposes. , , – among others, antigens, membrane receptors and enzymes have been considered as interesting biomarkers, since they play important roles in pathological processes, being in most cases overexpressed or upregulated compared to endogenous expression levels. the validation and potential interest of those targets have been intensively studied, and the identification and design of high- affinity binders for such targets has been – and remains – an area of intense research. the optimization of endogenous ligands has been the most widely used strategy to generate high-affinity ligands. , , – unidade de ciências quı́micas e radiofarmacêuticas, instituto tecnológico e nuclear, estrada nacional , sacavém, - , portugal. e-mail: isantos@itn.pt; fax: + - ; tel: + - nuclear medicine uses radiolabelled compounds for in vivo imaging and therapeutic purposes. such compounds are named radiopharmaceuticals and are used in such low concentrations that they have no pharmacological effect. when specific, ra- diopharmaceuticals consist of a target-specific moiety, such as an antibody or antibody fragment, peptides or low molecular weight ligands, linked to an appropriate radionuclide. depending on the intrinsic physical characteristics of the radionuclide, the radiopharmaceuticals are used for in vivo imaging or targeted- radionuclide therapy (trt). single-photon emission computed tomography (spect) and positron emission tomography (pet) are the two imaging modalities used in nuclear medicine. these modalities are able to determine the concentration of specific molecules in the human body in a non-invasive way, and are sensitive enough to visualize interactions between physiological targets and ligands. , – trt involves specific localization of a radionuclide emitting ionizing radiation to deliver a cytotoxic radiation dose to cancerous tissues, while sparing the surrounding healthy ones. , , table summarizes the most relevant radionuclides with medical interest in nuclear medicine, for both diagnostic (g or b+ emitters) and therapeutic applications (b-, a or auger electron emitters). in terms of target-specific moieties, monoclonal antibodies have long been considered interesting biomolecules for cancer diagnosis and therapy, and represent the start of a new era in cancer management. – owing to some drawbacks, namely poor pharmacokinetics, some improvements through protein this journal is © the royal society of chemistry dalton trans. d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g http://dx.doi.org/ . /c dt g http://dx.doi.org/ . /c dt g table relevant radionuclides for medical applications nuclide physical half-life mode of decay (%) application m tc . h it ( ) spect re . h b- ( ) therapy ec ( ) re h b- ( ) therapy i . h ec ( ) spect i . d b- ( ) therapy f . min b+ ( ) pet ec ( ) c . min b+ ( ) pet y . h b+ ( ) pet ec ( ) y . h b- ( ) therapy in . d ec ( ) spect ga . d ec ( ) spect ga . min b+ ( ) pet ec ( ) cu . h b+ ( ) pet ec ( ) cu . h b+ ( ) pet ec ( ) cu . h b+ ( ) pet ec ( ) cu . h b- ( ), b+ ( ) pet/therapy ec ( ) cu . h b- ( ) therapy zr . h b+ ( . ) pet ec ( ) sm . d b- ( ) therapy ho . d b- ( ) therapy lu . d b- ( ) therapy engineering have been made in the last few years, and the dream of targeted radionuclide therapy was partially fulfilled with the introduction of radiolabelled antibodies for clinical use, such as zevalin (murine antibody- y) and bexxar (murine antibody- i). despite these successful examples, there is still room for improvement, and attempts to find targeted radionuclide therapy for solid tumors – makes this a very active research area. following the finding that small regulatory peptide receptors are often overexpressed in certain human cancers and that derivatives of their natural ligands can be used for tumor targeting, the use of peptides has appeared as another approach for delivering ra- dioactivity to tumors. this approach has gained increased interest over the last two decades, driven in particular by the success of octreoscan r© ( in-labelled somatostatin analog) in the late s and by the increasing knowledge concerning overexpression of regulatory peptide receptors in tumor tissues. , , – , the avail- ability of different techniques to generate potential high-affinity peptides for a selected target is also responsible for the large pool of bioactive synthetic peptides. indeed, target-specific delivery of radioactive peptides, both for molecular imaging and therapy, is increasingly considered a promising strategy. well-established solid-phase peptide synthesis allows reproducible preparation of a variety of peptides with accurate chemical structures, which can be modulated to optimize affinity and specificity for the target, metabolic stability and pharmacokinetics. most of the naturally occurring peptides have a short biological half-life due to rapid degradation by various peptidases and proteases found in plasma. once the biological portion of the peptides has been identified, they can be engineered to prolong their biological half-lives in vivo. such improvement can be done by the introduction of d-amino acids, incorporation of amino alcohol, use of unusual amino acids or side-chains and amidation and/or acetylation of peptide c- and n-termini. the pharmacokinetics of peptides can also be tuned by altering the hydrophilic and hydrophobic balance of the peptide structure, through the introduction of charged amino acids (e.g. glutamic acid), carbohydrates or poly(ethylene)glycol (peg) chains in the peptide backbone. another advantage of peptides is their tolerance towards the modifications necessary for their labeling with different radionu- clides. for radiometallation, for example, the most explored ap- proach makes use of a bifuncional chelator (bfc) that coordinates the metal and presents an adequate functionality for the coupling of the targeting peptide. additionally, an appropriate linker that separates the chelating moiety and the bioactive fragment can also be used. the nature of such linkers is variable, and generally they are also used as pharmacokinetic modifiers. however, it must be kept in mind that the design of a peptide- based radiopharmaceutical is a non-trivial task, due to the relatively small size of the targeting peptide. all the structural modifications have to be done with retention of its affinity and selectivity to the putative receptors. moreover, the radiolabeled peptide must be obtained with high specific activity, show a high stability under physiological conditions, and present high selectivity and target-specific uptake, with low accumulation in non-target tissues. herein, we will present an overview of the chemical efforts made to find metallated peptides for nuclear molecular imaging and trt. in the first section, we will present relevant aspects of the coordination chemistry of metals with medical interest in nuclear medicine, for both diagnostic and therapeutic appli- cations. the second section will present a broad view of the chemical strategies explored to synthesize different families of radiometallated peptides, as well as the chemical efforts made to improve their biological performance. this contribution intends to update previous reviews, but will not cover work on radiolabeled somatostatin analogs for imaging or therapy of tumors, since these radiopeptides have been the focus of various comprehen- sive reviews recently published. – to provide some context to the current manuscript, some overlap with earlier reviews is unavoidable. , relevant coordination chemistry acyclic and cyclic polyaminopolycarboxylic ligands (fig. ), such as diethylenetriaminepentacetic acid (dtpa), , , , - tetraazacyclododecane- , , , -tetraacetic acid (dota), , , , -tetraazacyclododecane- , , , -tetraacetic acid (teta), , , -triazacyclononane- , , -triacetic acid (nota) and cross- bridged (cb) tetraazamocycle derivatives, have been the most extensively evaluated bfcs for the labeling of peptides with trivalent and bivalent radiometals like ga +, in +, y + and ln + or cu +. – one of the carboxylic arms of polyaminopolycarboxylic ligands can be used for the coupling of the peptide, typically via formation of amide bonds with primary amines from lysine residues or the n-terminus of peptides, without compromising the stability of the respective metal complexes. alternatively, the functional group used to couple the peptide can be introduced in the methylenic backbone of the chelator, dalton trans. this journal is © the royal society of chemistry d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g fig. acyclic and cyclic polyaminocarboxylic ligands. leaving all of the carboxylic pendant arms available for coordi- nation to the metal. a variety of possibilities can be explored to couple the peptide to the chelator. if the coupling involves a carboxylic group from the chelator, it is possible to perform the ac- tivation of the carboxyl group in situ using the common activation strategies, like those based on the formation of tetrafluorophenyl or n-hydroxysuccinimide activated esters. another alternative is the introduction of maleimide or isocyanate functions in the chelator framework, which promptly react with thiol or amino groups of the peptide with formation of thioether or thiourea bonds. , macrocyclic chelators provide metal complexes that are ther- modynamically more stable and kinetically more inert than the complexes with their acyclic counterparts, as a consequence of the ability of the free macrocycles to adopt preorganized conformations. table summarizes the stability constants (k ml) for complexes of some of the metals reviewed herein with the most common acyclic or macrocyclic polyaminopolycarboxylic ligands (fig. ). by themselves, these k ml values can indicate the relative affinity of the different chelators for a given metal. however, one has to consider that it can be difficult to compare stability constants for ligands of different basicity. to overcome such difficulty, the respective pm values must be considered. among the several polyaminopolycarboxylic ligands, dota- like chelators do not always provide for the most stable complexes (table ). nevertheless, so far, dota-like chelators have been extensively used for the radiometallation of peptides, most proba- table stability constants (logk ml a ) for complexes of polyaminocar- boxylates with divalent and trivalent metal ions metal chelator cu(ii) ga(iii) in(iii) y(iii) lu(iii) dtpa . b . b . h . j — dota . c . g . f . j . l ,m teta . d . f . f . k . k nota . e . i . i — — a k ml = [ml]/[m][l]. b ref. c ref. . d ref. . e ref. . f ref. . g ref. . h ref. . i ref. . j ref. . k ref. . l ref. . m ref. . bly due to the commercial availability of several activated dota derivatives ready for conjugation. gallium and indium the group elements gallium (ga) and indium (in) are post- transition metals presenting radionuclides suitable for spect ( ga, in) and pet ( ga) imaging, or for auger-therapy ( in) (table ). ga and in are cyclotron-produced gamma emitters obtained at reasonable cost and are deliverable to different users over relatively large distances. ga is a positron emitter readily accessible from the ge/ ga generator, offering the possibility to obtain on site a pet radionuclide without needing the presence of a nearby cyclotron. , this journal is © the royal society of chemistry dalton trans. d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g the chemistry of gallium and indium in aqueous media is exclusively limited to the oxidation state iii. in aqueous solu- tion, the m + (m = ga, in) ions have a marked tendency to undergo hydrolysis, which is even more pronounced for ga(iii). at physiological ph, gallium forms essentially the soluble gallate anion [ga(oh) ]-, while indium precipitates as the tris(hydroxide) [in(oh) ]. when designing radiopharmaceuticals, namely ra- diometallated peptides, it is of particular importance to obtain ga and in complexes resistant to hydrolysis. these complexes must also have resistance towards transchelation reactions with transferrin, which is a protein present in the plasma and involved in the receptor-mediated transport of iron into cells. this is particularly relevant for ga(iii), that presents the highest affinity to transferrin due to the similarity of the coordination chemistry of trivalent gallium and iron. , both ga(iii) and in(iii) are rather hard lewis acids and, for this reason, the formation of stable complexes with these metal ions usually requires the use of polydentate chelators presenting anionic oxygen donor groups, such as acyclic or macrocyclic polyaminocarboxylic ligands (fig. ). the difference on the ionic radius of ga + ( – pm, cn = – ) and in + ( – pm, cn = – ) is another important aspect to take into consideration when selecting a proper ligand for labeling a biomolecule with their radioisotope. the maximum coordination number (cn) attained by ga(iii) complexes is while in(iii), being larger, forms complexes with cn = and even with cn = . these differences are well documented by several x-ray structures of ga(iii) and in(iii) complexes with polyaminocarboxylic ligands, as exemplified in fig. for a dota derivative containing a pendant arm functionalized with a triphenylphosphonium (tpp) group. the ga(iii) complex is hexacoordinated with a distorted octahedral geometry, and the in(iii) complex is heptacoordinated with a monocapped trigonal prismatic geometry. fig. molecular structures of ga-dota-tpp and in-dota-tpp. the labeling of peptides with ga/ ga has been performed using mainly dota or nota derivatives as bifunctional chela- tors, while dtpa and dota derivatives have been used for in- labeling of peptides. dtpa is potentially octadentate and forms complexes of higher stability with in(iii) compared to ga(iii) (table ). the ga(iii)-nota complex has an exquisite stability among gallium complexes, presenting a thermodynamic stability (logk = . , pm = . ) approximately orders of magnitude higher than the one of ga(iii)-dota (logk = . , pm = . ). moreover, the kinetics of complexation of ga(iii) is faster for nota than for dota, necessitating longer reaction times and higher tempera- tures to label peptides with / ga using dota-like chelators. for this reason, nota-like chelators are very favorable for / ga labeling of peptides. the high stability constant of ga(iii)-nota complexes and their kinetics certainly reflect a better fitting of the nota cavity size with the size of the ga + ion and the involvement of all pendant arms in the coordination to the metal. to keep the possibility of a n o -hexadentate coordination after linkage of the biomolecule, nota-like chelators containing a diacid pendant arm, such as nodasa ( , , -triazacyclononane-n-succinic acid- n¢,n¢¢-diacetic acid) and nodaga (( , , -triazacyclononane- n-glutamic acid-n¢,n¢¢-diacetic acid), have been designed and synthesized (fig. ). , unlike ga(iii), the coordination require- ments of in(iii) are not fulfilled by nota-like chelators which, for this reason, are not the best suited bifunctional chelators for the labeling of peptides with in. yttrium and the lanthanides yttrium (y) and the lanthanides (ln) are trivalent metals that offer differing b-emitting radioisotopes relevant for therapeutic applications. among these radioisotopes, y and the radiolan- thanide lu have been the most extensively explored to obtain radiometallated peptides for peptide receptor radionuclide therapy (prrt). , , the aqueous coordination chemistry of yttrium and lanthanides shows a great similitude due to their common tricationic charge and similar ionic radii. the y + and ln + metal ions show a hard acidic character and tend to form complexes with hard donor atom ligands, displaying high coordination numbers, usually or . therefore, the labeling of peptides with these radiometals has been performed using mainly polyaminocarboxylic ligands. acyclic dtpa derivatives form by far more stable complexes with in(iii) than with y(iii) or ln(iii) (table ). the latter metal ions are coordinated more avidly by dota derivatives, due to the higher thermodynamic stability and enhanced kinetic inertness of the corresponding complexes. these features explain why dota- like compounds can be considered as the best choice for labeling peptides with y or lu, although dtpa derivatives have been used in several instances for that purpose. the high stability of y-dota and lu-dota complexes can be accounted for by the good match of the dota cavity size to the ionic radii of these trivalent metal ions. a poor match between y + and lu + ions and the cavity size of teta derivatives justifies the much lower stability of m-teta complexes (m = y, lu). for this reason, teta chelators are not a good option for y- or lu-labeling of peptides. even after functionalization of one pendant arm with a targeting biomolecule, it is considered that dota-like chelators act as n o -octadentate donor ligands towards ln + and y + ions, dalton trans. this journal is © the royal society of chemistry d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g as the amide oxygen from the conjugating arm also coordinates to the metal. this coordination mode has been confirmed by x-ray structural analysis of the model compound y-dota-dphenh that contains a dota derivative with a carboxymethyl arm func- tionalized with phenylalanine (fig. ). nmr studies of a related yttrium complex bearing a p-aminoanilide (aa) functionalized pendant arm, y-dota-aa, have shown the retention of the octadentate coordination of the dota derivative in solution. this macrocyclic ligand in the congener in-dota-aa is also octa- coordinated but the in(iii) complex is fluxional in solution at room temperature, most probably due to de-coordination/coordination of the amide oxygen from the functionalized pendant arm. such differences can affect the in vivo behavior of congener in(iii) and y(iii) complexes and, eventually, may explain the discrepancies observed for the biological performance of similar y or in-dota-aa complexes. despite such differences, in radiopharmaceutical chemistry in complexes are often used as surrogates to estimate the biodistribution and radiation dosimetry of congener y complexes. however, such studies need to take into consideration the differences in solution of y(iii) and in(iii) complexes. fig. molecular structure of y-dota-dphenh . yttrium(iii) and lanthanide(iii) complexes of dota derivatives can exist in two interconverting diastereoisomers of square antiprism (sap) and twisted square antiprism (tsap) geometries. the ratio sap/tsap depends very much on the size of the trivalent ion being preferred the sap geometry for the largest ions, like y + or lu +. at macroscopic level, the formation and intercon- version of these coordination isomers has been intensively studied by different research groups using nmr techniques. , studies on the formation of different coordination isomers of dota- like chelators using trivalent radiometals are scarce. recently, it has been shown that a dota derivative ((s)-p-nh -bn-dota) bearing a benzyl amine substituent at the methylenic backbone of the macrocycle forms a mixture of two isomers when labeled with y (b+ emitter; t / = . h). as expected, the sap isomer is predominant, being observed a sap/tsap ratio of : . after separation by hplc, the biodistribution profile of each isomer of [ y((s)-p-nh -bn-dota)] was assessed using wistar rats. only minor differences were observed in their biological behavior, which may indicate that the isomerism of y(iii) complexes with dota- like chelators does not strongly influence their in vivo behavior. copper copper has a unique combination of diagnostic ( cu, cu, cu and cu) and therapeutic radionuclides ( / cu) (table ). moreover, due to its nuclear properties, cu is suitable for pet imaging and for trt. , from the three accessible oxidation states (i–iii) of copper under aqueous solution, cu(ii) has been the most widely used to obtain cu complexes potentially useful as radiopharmaceuticals. this reflects the fact that cu(iii) is relatively rare and difficult to stabilize in aqueous solution, while cu(ii) complexes display an increased kinetic inertness compared with cu(i) complexes. to find labeling methodologies to prepare cu(ii) complexes stable in vivo, it is necessary to take into consideration basic aspects of the aqueous coordination chemistry of cu(ii), as well as the behavior of copper as an essential trace metal in human biochemistry. the cu(ii) complexes must be resistant towards transchelation to proteins involved in the transport and storage of copper, and must not undergo reduction to cu(i), as it will increase the probability of releasing the radiometal in vivo. dota and teta have been largely used as bifunctional chelators for cu-labeling of peptides, although they are not ideal chelators for cu(ii), as well documented by the in vivo instability of their complexes. in vivo experiments in rat models have shown that both cu-dota and cu-teta undergo transchelation of cu(ii) to liver and blood proteins, with this behavior being more pronounced in the case of cu-dota. these macrocyclic complexes present a high thermodynamic stability with almost coincident k ml values (table ), indicating that their kinetic inertness has a more crucial influence on their in vivo instability. the -membered triazamacrocycle nota has also a good affinity for divalent copper, and the corresponding cu(ii)-nota complex presents a stability constant similar to those with dota and teta (table ). – nota-based bifunctional chelators allowed the cu-labeling of different bioactive peptides in very high specific activity and under mild reaction conditions. as reviewed below, the resulting metallopeptides have shown a better biodistribution profile than those labeled with cu using dota or teta derivatives as bfcs, pointing out the best properties of nota-derivatives to stabilize the radiometal in vivo. different investigators have synthesized cross-bridged (cb) tetraazamocycles, aiming to introduce novel classes of bifunctional chelators suited for the in vitro and in vivo stabilization of cu(ii) complexes. , the cyclen-based , -bis(carboxymethyl)- , , , -tetraazabicyclo-[ . . ]tetradecane (cb-do a) and the cyclam-based , -bis(carboxymethyl)- , , , -tetraazabicyclo- [ . . ]tetradecane (cb-te a) were used to prepare the complexes cu-cb-do a and cu-cb-te a. metabolic studies in rat models showed that cu-cb-do a and cu-cb-te a pre- sented an increased in vivo stability compared with cu-dota and cu-teta complexes, confirming that the introduction of the ethylenic bridge enhances the stability of these macrocyclic cu(ii) complexes. , in particular, the combination of the cyclam backbone with the cross-bridge significantly enhanced the in vivo stability of cu-cb-te a. however, the kinetics of cu(ii) complexation by cb-te a is rather slow, and the formation of cu-cb-te a requires relatively harsh radiolabeling conditions that may induce damage to some biomolecules. hence, there is still room for finding this journal is © the royal society of chemistry dalton trans. d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g bifunctional chelators that efficiently bind to cu(ii) under mild reaction conditions. looking to achieve such goals, cryptand macrocyclic ligands of the hexaaminemacrobicyclic type (fig. ), known as sarcophagines (sar’s), have been used as bfcs to label a few antibodies and peptides with cu. – the sar ligands encapsulate the cu(ii) ion, forming hexacoordinated and octahedral cu(ii) complexes with thermodynamic stability constants as high as the ones found with dota and teta derivatives. at room temperature, the sar ligands bind to cu(ii) with fast complexation kinetics, at remarkably low concentrations over a ph range of – . the resulting complexes show a high kinetic inertness, as shown by negligible in vitro transchelation. potentially hexadentate acyclic ligands of the bispidine type (fig. ) have been also envisaged as promising bifunctional chela- tors for cu-labeling of biomolecules, offering different positions of the ligand framework to couple the targeting molecule. these extremely rigid n-donor ligands efficiently encapsulate cu(ii) leading to octahedral complexes that present stability constants in the same range as those of macrocyclic cu(ii) complexes. also, these acyclic ligands still keep relatively fast complexation kinetics like other open-chain amine-pyridine based ligands. these favorable features prompted the synthesis of the model complex cu-bispidine and its in vitro evaluation. no transchelation or demetalation was found in the presence of superoxide dismutase (sod) or in rat plasma. square planar bis(thiosemicarbazone) cu(ii) complexes were explored for the development of cu radiopharmaceuticals several years ago (fig. ). specifically, cu-atsm (atsm: diacetyl-bis(n -methylthiosemicarbazone) has been considered a promising hypoxia-specific pet tracer. recently, a new atsm derivative bearing a pendant hexanoic acid arm (atsm-ahx) was synthesized (fig. ), conjugated to a bombesin analog and labeled with cu. in vitro studies have shown that the resulting radiometallated peptide resisted to histidine and cysteine challenge. it is of crucial importance to evaluate the in vivo stability of such cu complexes. technetium and rhenium mtc is among the most widely used spect radionuclides for labeling bioactive peptides, due to its ideal nuclear properties, low-cost and availability from commercial mo/ mtc generators. the radiometallation of peptides with mtc is done in aqueous solution, starting from the tc(vii) permetallate anion ( mtco -), which needs to be reduced prior to its complexation by an adequate bfc carrying the biomolecule. the diverse and rich chemistry of this radiometal allows the use of different strategies for labeling peptides with mtc, in terms of metal cores and/or oxidation states and selection of bfcs (fig. ). – one of the approaches used for labeling peptides with mtc relies on the use of square-pyramidal tc(v) oxocomplexes of the type [tco(nxs -x)] containing the [tco] + core and tetradentate nxs -x bifunctional chelators, namely the tripeptide mercap- toacetiltriglycine (mag- ) that acts as a n s-donor ligand and presents a pendant carboxylic arm for biomolecule coupling (fig. ). this class of complexes can give syn and anti isomers that may present different biological properties. in addition, the functionalization of the tetradentate chelator with the biologi- cally active molecule can be quite demanding, requiring tedious protection/deprotection strategies. to overcome some of the drawbacks associated with the use of tc(v) monoxocomplexes, other approaches based on the trans-[tco ]+ and the [tc-hynic] (hynic = -hydrazinonicotinic acid) cores (fig. ) have been exploited, and these approaches led, in several instances, to radiometallated peptides with promising biological profiles. the trans-[tco ]+ core has been used in combination with acyclic tetraamine ligands, which form well-defined octahedral tc(v) dioxocomplexes, and can be c-functionalized with pendant arms suitable for the coupling of peptides, as shown in fig. . the [tc- hynic] core offers the advantage of a straightforward functional- ization with the biomolecule, avoiding the use of tedious and time- consuming protection strategies. hynic can coordinate as a uni- or bidentate ligand and, therefore, does not fulfill the coordination requirements of the metal, making necessary the use of chelating coligands. hydrophilic n- and o-donors, like ethylenediamine diacetic acid (edda), gluconate or tricine, are among the most explored coligands. , – the use of such coligands offers the advantage of an easy adjustment of the physico-chemical proper- ties (e.g. charge, hydrophilicity) of the final complexes, which can strongly influence the pharmacokinetics and excretory pathways of mtc-labeled peptides. however, the resulting binary mixed- ligand complexes show a relatively low stability. the improvement of the stability of tc-hynic complexes has been achieved by the introduction of a ternary ligand, such as a water-soluble phosphine, or by exploring phosphine- and nicotinyl-containing hynic chelators. – the nature of the tc–n bonds involved in the coordination of hynic is still unknown, which can be a serious drawback since the full characterization and chemical identification of a potential radiopharmaceutical is mandatory to get a marketing authorization. the so-called tricarbonyl approach has gained considerable attention in the last few years, following the introduction by alberto and co-workers of a convenient and fully aqueous-based kit preparation of the organometallic precursor fac-[ mtc(oh ) (co) ]+ directly from [tco ]-. , the chemical robustness of the fac-[tc(co) ]+ core and the lability of the three water molecules offer the possibility of exploring a fig. bis(thiosemicarbazone) cu(ii) complexes. dalton trans. this journal is © the royal society of chemistry d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g fig. selected m tc-complexes with different cores, oxidation states and bfcs. well-defined chemistry that is easily amenable to bioconjugation. labeling of peptides based on this organometallic approach has been reported by several research groups, using bidentate or tridentate bfcs. – in general, complexes anchored by tridentate chelators are more stable in vivo compared with those involving bidentate bfcs (fig. ). rhenium has two b-emitting isotopes, re and re (table ), with nuclear properties suitable for the development of therapeutic radiopharmaceuticals, namely for trt. the chemistry of rhenium is quite similar to that of the th group congener technetium, in terms of the large variety of oxidation states, metallic cores, and bifunctional chelators adequate for the design of radiopharmaceuticals. , in fact, for a given class of ligands and metal oxidation state, re and tc complexes are usually isostructural. however, there are important differences in the kinetics of ligand exchange reactions and redox chemistry of re and tc complexes, which are key issues in the radiopharmaceutical chemistry of these metals. rhenium compounds are more difficult to reduce than the tc congeners. moreover, ligand exchange reactions are faster for tc complexes. the labeling of peptides with re/ re can be attempted using the strategies mentioned above for mtc, starting from aqueous perrhenate. however, the achievement of re and re-labeled peptides with high in vivo stability can be quite challenging due to more pronounced tendency of re complexes to undergo in vivo oxidation reactions. target-specific radiometallated peptides radiopeptides targeting the avb integrin receptor integrins are a family of heterodimeric receptors that play a pivotal role in many cell–cell and cell–extracellular matrix interactions. , they consist on transmembrane glycoproteins that contain two non-covalently bound a and b subunits. in mammals, a and b subunits have been characterized, which selectively combine to afford at least different integrin receptors. the integrin receptor avb , also known as the vitronectin receptor, is expressed on endothelial cells and modulates cell migration and survival during angiogenesis. being overexpressed in a variety of tumor cell types, such as gliobastoma, melanoma, ovarian, breast and prostate cancer, it potentiates tumor invasion and metastasis. – thus, the avb receptor has become a target of choice for the diagnosis and therapy of rapidly growing and metastatic tumors. additionally, the non-invasive assessment of avb expression in vivo can be helpful to select patients likely to respond to treatment with antiangiogenic drugs, as well as allowing treatment follow-up. the avb -integrin recognizes selectively extracellular matrix proteins, such as vitronectin or fibronectin, which contain the exposed arg-gly-asp (rgd) sequence. the discovery of the canonical rgd sequence motivated an intense research work on small peptide-based molecules aimed at finding avb -integrin antagonists suitable for antiangiogenic therapy. , moreover, a plethora of mono- and multivalent rgd-containing peptides have been labeled with a variety of radionuclides. – so far, the most promising results have been obtained with [ f]galacto-rgd, which has been evaluated in patients with melanoma, sarcoma and breast cancer. however, this tracer has a relatively low tumor uptake, high cost and is obtained by a tedious and relatively low-yield radiosynthesis. looking for a better alternative, intense research efforts have been devoted to radiometallated rdg- containing peptides for pet or spect imaging of avb -integrin receptors. incorporation of the rgd sequence into a cyclic pentapeptide structure provides avb -antagonists with enhanced affinity and selectivity, as in the case of cyclo(arg-gly-asp-dtyr-val). re- placement of the val in c(rgdfv) by lys led to c(rgdfk) (fig. ) without altering the integrin avb binding-affinity. , this journal is © the royal society of chemistry dalton trans. d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g the c(rgdfk) motif has been the most extensively explored for development of radiometallated peptides, profiting from the presence of the e-nh group of lys to conjugate to a bfc and/or pharmacokinetic modifiers (fig. ). for evaluation of compounds with maximized binding affinity via the bivalency/multivalency approach, the c(rgdfk) motif has also been used to syn- thesize congener multimeric molecules (e.g. e[c(rgdfk)] or e[e[c(rgdfk)] ] ) via either a glutamic acid tree, by assembling to the regioselectivity adressable functionalized template (raft), or by click chemistry (fig. ). – the linear peptides gly -arg -gly -asp -ser -pro -cys and arg -gly -asp -ser -cys -arg -gly -asp -ser -tyr were the first mtc-labeled rgd-containing compounds. , the result- ing radiometallated peptides correspond most likely to tc(v) oxocomplexes stabilized by the cysteine side chain. the radio- labeled decapeptide was able to localise metastatic melanoma lesions in several patients but with low tumor-to-background ratios. a doubly cyclized rgd-contaning peptide (nc ), bearing a pegylated c-terminus and a diamine-dioxime chela- tor for complexation of tc(v), was used to prepare mtc- nc (fig. ). – the ability of mtc-nc to de- tect metastatic lesions in patients with lung cancer and patients with breast cancer was investigated in a multicenter phase a clinical trial. it has been concluded that the sensitivity of mtc-nc to detect liver metastases was poor and the detection of bone metastases equivocal. however, lung and brain metastases from both breast and lung cancer could be detected. different monomeric or multimeric cyclic rgd-containing peptides have been labeled with mtc using the hynic approach. , the mtc complex mtc-hynic-e[c(rgdfk) ] has shown a tenfold higher affinity for avb -integrin com- pared to the monomeric congener mtc-hynic-e-c(rgdfk). in agreement, the dimeric compound has shown an increased tumor uptake and retention in a ovcar- ovarian carcinoma xenograft. however, kidney retention of the dimeric peptide was higher than that of the corresponding monomer. , to improve the biodistribution profile of radiolabeled dimeric peptides of the mtc-hynic-e[c(rgdfk) ] type, different strategies were explored, namely the use of different co- ligands such as trisodium triphenylphosphine- , ¢, ¢¢-trisulfonate (tppts), isonicotinic acid (isonic) or , -pyridinedicarboxylic acid (pda). the resulting ternary complexes, [ mtc-hynic- e[c(rgdfk)] (tricine)(l)] (l = tppts, isonic, pda) showed a high tumor uptake and improved tumor to kidney and tumor to liver ratios. fig. monomeric, dimeric and tetrameric cyclic rgd peptides. dalton trans. this journal is © the royal society of chemistry d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g fig. structure of nc . a series of cyclic dimeric rgd peptides containing triglycine (g ) and peg linkers between the e[c(rgdfk) ] binding mo- tifs were recently introduced and labeled with mtc using the hynic approach and tppts as the co-ligand. the complexes [ mtc(hynic- g -dimer)(tricine)(tppts)] and [ mtc(hynic- peg -dimer)(tricine)(tppts)] have shown a higher avb - integrin binding affinity and much higher tumor uptake in mda- mb- breast cancer xenograft than [ mtc(hynic-peg - dimer)(tricine)(tppts)]. , these differences can be accounted for by the longest distances between the two cyclic rgd motifs providing for the best-performing complex. the related radiopep- tide [ mtc(hynic-peg -tetramer)(tricine)(tppts)], bearing a tetrameric rgd derivative, also presented a high tumor uptake, but has shown more pronounced kidney and liver retention compared to the dimeric congeners. the tricarbonyl approach has been also used in several instances for labeling linear or cyclic rgdf/yk peptides, using histidine, n,n-picolylamine diacetic acid (pada), iminodiacetic acid (ida) or pyrazolyl-diamine (pznn) as bfcs. – the radiometallation of rgd-containing peptides did not compromise their affinity for avb -integrin receptors, although all the compounds presented a relatively low tumor accumulation. a variety of monomeric or multimeric rgd-containing peptides have been labeled with in, ga and cu, using polyaminocarboxylic ligands as bfcs. the initial studies were done with dtpa- and dota-c(rgdf/yk) derivatives, which were further optimized using pharmacokinetic modifiers such as additional charged amino acids (e.g. glutamic acid) or pegylated linkers. , in the case of [ in-dtpa-e-e[c(rgdfk)] ] and [ cu-dota-peg( )-c(rgdfk)] the presence of glutamic acid and peg ( da) spacers led to enhanced tumor to kidney, and tumor to liver ratios without compromising tumor uptake. , some dimeric rgd derivatives (fig. ) were coupled to nota and dota chelators, using triglycine (g ) or peg linkers, and labeled with ga, cu or in. the radioconjugates [ ga-nota-x-dimer] (x = g , peg ), [m-dota- peg - dimer] and [m-dota- g -dimer] (m = cu, in) have shown high tumor uptake and prolonged tumor retention with favorable tumor to background ratios. – interestingly, [ cu-dota- peg -dimer] and [ in-dota- peg -dimer], sharing the same bfc, have shown almost superimposed tumor uptake and tumor to background values in the same animal model, suggesting a min- imal impact of the radiometal on the biodistribution profile. , [ in-dtpa- peg -dimer] has also shown a high initial tumor uptake with excellent tumor-to-liver and tumor-to-kidney ratios. however, the dtpa-conjugate showed a much faster tumor washout and poorer tumor-to-background ratios compared to [ in-dota- peg -dimer]. altogether, these findings seem to indicate that peg -dimer and g -dimer are among the most suitable rgd-containing compounds to design radiometallated peptides for spect and pet imaging of avb -integrin expression, as well as for prrt (peptide receptor radionuclide therapy) of avb -positive tumors. radiopeptides targeting the cholecystokinin (cck )/gastrin receptor cholecystokinin (cck) is an endogenous regulatory peptide that displays a wide variety of physiological functions both in the gastrointestinal tract and central nervous system. all the biologically active forms of the peptide (e.g. cck , cck and cck ) are derived from a -amino acid peptide precursor, with cck (asp-tyr-met-gly-trp-met-asp-phe-nh ) being the most abundant form in the brain. – so far, three distinct subtypes of cck receptors have been identified: cck or cck- a, cck /gastrin receptor or cck–b, and cck idsv. – a high incidence of cck receptor protein was found in medullary thyroid carcinomas (mtc) ( %), small cell lung cancer (sclc) this journal is © the royal society of chemistry dalton trans. d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g ( %), stromal ovarian cancers ( %), astrocytomas ( %), some of the neuroendocrine gastroenteropancreatic tumors, and in several soft tissue tumors, in particular in leiomyosarcomas. , , thorough research efforts have been directed toward the development of radioactive peptides for targeting cck receptor in vivo, aiming at the visualization/detection or treatment of cck receptor-expressing tumors such as mtc or sclc. – as can be seen in tables and , the peptides studied include gastrin- or cck-related analogs, which share the c-terminal cck receptor-binding tetrapeptide sequence trp-met-asp-phe-nh . in some of these analogs, the methionine amino acid may be replaced by leucine or norleucine. the initial promising results obtained with i-labeled gastrin i at the preclinical and preliminary clinical level prompted several table gastrin and gastrin analogsa amino acid sequence: pglu-gly-pro-trp-leu-(glu) -ala-tyr-gly-trp-met-asp-phe-nh (human gastrin i) leu-(glu) -ala-tyr-gly-trp-met-asp-phe-nh (minigastrin (mg)) dglu-(glu) -ala-tyr-gly-trp-met-asp-phe-nh (mg ) dglu-ala-tyr-gly-trp-met-asp-phe-nh (mg ) his-his-glu-ala-tyr-gly-trp-met-asp-phe-nh (h met) his-his-glu-ala-tyr-gly-trp-nle-asp-phe-nh (h nle) (his) -glu-ala-tyr-gly-trp-nle-asp-phe-nh (h nle) gly-ser-cys(succinimidopropionyl-glu-ala-tyr-gly-trp-nle-asp-phe- nh )-glu-ala-tyr-gly-trp-nle-asp-phe-nh (divalent peptide mgd ) gly-dglu-(glu) -ala-tyr-gly-trp-met-asp-phe-nh ([gly -dglu ]mg) glu-ala-tyr-gly-trp-met-asp-phe-nh (peptide ) gly-his-glu-ala-tyr-gly-trp-met-asp-phe-nh (peptide ) gly-ala-tyr-gly-trp-met-asp-phe-nh (peptide ) a amino acid residues in bold type are important for the biological activity of the peptide. table cholecystokinin (cck) analogsa b amino acid sequence: dasp-tyr-met-gly-trp-met-asp-phe-nh (cck ) dasp-tyr(oso h)-met-gly-trp-met-asp-phe-nh (scck ) dasp-tyr-nle-gly-trp-nle-asp-phe-nh ([nle , ]cck ; cck (nle)) dasp-phe(p-ch so h)-nle-gly-trp-nle-asp-phe-nh (scck [phe (p-ch so h), nle , ]) dasp-phe(p-ch so h)-hpg-gly-trp-hpg-asp-phe-nh (scck [phe (p-ch so h), hpg , ]) trp-nle-asp-phe-nh (cck ) ahx-ahx-trp-nle-asp-phe-nh ((ahx) -cck ) dasp-tyr-met-gly-trp-nle-asp-phe-nh ([nle ]cck ) a hpg = homopropargylglycine; ahx = -aminohexanoic acid. b amino acid residues in bold type are important for the biological activity of the peptide. research groups to label gastrin and cck analogs with metals such as in or mtc using adequate bfcs. , beher and béhé demonstrated that [ in-dtpa-dglu ]mg ( in-dtpa-mg ) showed improved in vitro and in vivo stability over [ in-dtpa-]mg. in tumor-bearing nude mice, fast and specific uptake in cck–b-receptor-positive tissues and a fast renal clearance pattern was found for both peptides. however, [ in- dtpa-]mg showed higher background activity in the whole body. in humans, fast tumor and stomach uptake was observed for both in-labeled compounds, but in-dtpa-mg lacked the liver, spleen and bone marrow uptake observed with its leu analog. following a preliminary pilot clinical study with in-dtpa- mg in four mtc patients, where cck receptor expression was identified both in physiologically cck receptor-expressing tissues and in metastatic lesions, a larger clinical study in patients was performed. , these clinical studies allowed the visualization of all tumors detected by other imaging modalities and, interestingly, in out of mtc patients with occult disease, at least one lesion was detected. in the same study, the therapeutic effect of y-dtpa-mg was studied in mtc patients and, despite severe nephrotoxicity in two of them, four patients experienced stabilization of the disease, which lasted for up to months. the utility of in-dtpa-mg for visualization of cck receptor-expressing tumors was confirmed by an independent clinical study conducted by gottardt et al. aiming to reduce the high renal retention associated with mg , the mg , minigastrin analogs, missing five glutamic acid residues in positions – , have been developed. the biological properties of in-dtpa-mg were also compared with those of the ra- diopeptide in-dota-mg in ar - j-tumor bearing lewis rats. the reduction of the number of glutamates increased tumor- to-kidney ratio but, additionally, resulted also in a considerably lower metabolic stability. , a new family of in- dota-minigastrin analogs, containing a variable number of his residues at the n-terminal ( in-dota- h met, in-dota-h nle, in-dota-h nle) was assessed in pancreatic xenografted models (table ). among these peptides, in-dota-h met has shown the most interesting properties in terms of tumor-to-kidney ratios, with saturable uptake in target organs and low uptake by nontarget tissues other than the kidney. however, a high level of oxidation of the methionine residues was observed during the labeling procedure. replacement of met by nle, a non-oxidizable amino acid, led to a significant reduction of receptor affinity and in vivo tumor uptake, contrary to what has been described for other analogs. , to improve the in vivo performance of these monomeric cck r-binding minigastrin analogs, sosabowski et al. la- beled the divalent gastrin peptide conjugate dota-gly-ser- cys(succinimidopropionyl-glu-ala-tyr-gly-trp-nle-asp-phe- nh )-glu-ala-tyr-gly-trp-nle-asp-phe-nh (dota-mgd ) with in, and compared the tumor-targeting properties of the resulting radiocomplex with those of in-dota-h met. biological studies have shown that dimerization of the receptor binding site resulted in an increase in tumor uptake. however, such effect must still be confirmed in humans. , one of the most successful approaches to target cck receptor- expressing tumors in vivo with radiometal-based probes has been developed by nock et al., who synthesized a minigastrin analog labeled with the trans-[ mtco ]+ core stabilized by a tetraamine dalton trans. this journal is © the royal society of chemistry d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g fig. metallated cck derivatives of the type [m(o)(sn o-phscn-x n -cck )] (m = m tc, re; x = b-alanine, ahx; n = , and ). ligand. different spacers between the chelator and the peptide have been explored. among all of them, [ mtc(o )(n – )gly - dglu ]mg (demogastrin ) was the most promising. the biolog- ical behavior of demogastrin has been compared with that of in-dota-mg and in-dota-cck both at the preclinical and clinical level. demogastrin was the best diagnostic tool in mtc patients, not only because of its superior in vivo stability, but also due its high sensitivity and better quality of the scintigraphic images. renal uptake was similar to all radiopeptides studied, but could be reduced by co-injection of polyglutamic acid. – the analogs mg and mg were also labeled with mtc, using the hynic approach, and the resulting complexes, mtc-edda- hynic-mg and mtc-edda-hynic-mg , were evaluated in ar - j rat pancreatic tumor cells and in ar - j tumor-bearing nude mice. the mtc-edda-hynic-mg derivative showed advantages over mtc-edda-hynic-mg , in terms of lower kidney retention with unchanged uptake in tumors and cck- receptor-positive tissue. however, the lower metabolic stability and impurities formed in the labeling process still leave room for further improvement. attempting to improve stability, cyclic variants of mg have been proposed, and the resulting peptides were labeled with the mtc-hynic moiety, yielding the radiometalated peptides mtc-edda-hynic-cyclomg and mtc-edda- hynic-cyclomg . both radiopeptides showed rapid internal- ization in receptor expressing cells (ar j cells) and high tumor uptake in ar j tumor xenografts. however, the cyclization of mg had only a limited effect on the overall stability, and the biodistribution profile of mtc-edda-hynic-cyclo-mg was similar to the linear analog mtc- edda-hynic-mg . king et al. reported the synthesis of three peptide-hynic conjugates containing the -ala-tyr-gly-trp-met-asp-phe-nh c-terminal sequence and combinations of histidine, glutamic acid, and glycine. the peptide conjugates were labeled with mtc using either tricine or edda as a coligand, and their biological properties evaluated in ar j cells and ar j tumor xenograft. it was found that the insertion of histidine into the sequence of peptide-hynic conjugates resulted in more stable, more homogeneous mtc complexes ( mtc-tricine-hynic-lys- peptide ) (table ), with improved tumor-targeting performance both in vitro and in vivo. in addition to the previously mentioned radioiodination studies of gastrin analogs for targeting cck receptors in vivo, beher et al. also investigated the utility of cck derivatives, and concluded that sulfated (s) cck analogs and some non-sulfated (ns) gastrin analogs displayed the highest binding affinities (tables and ). desulfation or the complete removal of the n-terminal tyr led to a loss of affinity. reubi et al. has introduced a family of highly potent and selec- tive dtpa- and dota-cck (non-sulfated) analog conjugates: dtpa-cck (nle) and dtpa-cck . the corresponding in complexes were prepared, and their biological properties indicated that these compounds have substantial promise for the in vivo visualization of cck–b receptor-expressing tumors. only in- dota-cck (nle) was evaluated in humans and it was shown that this complex holds great potential for both scintigraphy and radionuclide therapy of human cck receptor positive tumors such as mtc and sclc. more recently, aloj et al. studied the in vitro and in vivo properties of in-dtpaglu-gly-cck , a complex containing the chelating moiety dtpaglu bound through a glycine linker at the n-terminal end of the bioactive peptide cck . it was found that this highly stable radiopeptide presents a high- binding affinity to the receptor and presented avid uptake in cck r overexpressed xenographs, with rapid clearance of unbound radioactivity through the kidneys. , the radiopeptide in-bpca-(ahx) -cck , which contains two -aminohexanoic acid (ahx) moieties between the bfc (bpca) and the cck derivative, presented a high and spe- cific tumor uptake and a low renal accumulation in mice bearing e a-cck r tumors compared with the internal control, in-trans-cyclohexyldiethylenetriaminepentaacetic acid cholecystokinin octapeptide ( in-scn-chx-a¢¢-dtpa-[nle] - cck ). the same research team has also proposed a set of mtc(v)-radiolabelled short peptide conjugates of the type indicated in fig. . laverman et al. have shown that sulfated and non-sulfated cck peptides labeled with the mtc-hynic moiety using tricine/nicotinic acid as coligands bind with high affinity to the cck receptor. mtc-hynic-scck also showed high affinity toward the cck receptor. studies in athymic mice bearing subcutaneous tumors expressing either cck or cck receptors revealed that uptake of mtc-hynic-scck in cck or cck receptor-positive tumors was fifteen-fold higher than that of mtc- hynic-nscck . owing to the fact that scck contains an easily hy- drolyzable sulfated tyrosine residue and two methionine residues prone to oxidation, roosenburg et al. replaced the tyr(oso h) moiety in scck by a robust isos- teric sulfonate, phe(p-ch so h), and replaced the methio- nine by norleucine (nle) or homopropargylglycine (hpg). the peptides scck [phe (p-ch so h),met , ], scck [phe (p- ch so h),nle , ], and scck [phe (p-ch so h),hpg , ] were n-terminally conjugated to dota and labeled with in. biodistribution studies in mice with ar j tumors showed this journal is © the royal society of chemistry dalton trans. d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g [ in-dota-scck [phe (p-ch so h),nle , ] to have the highest tumor uptake. cck has been derivatized with a cys-gly unit and labeled with the metal fragment m[tc(n)(pnp )] + (pnp = n,n- bis(dimethoxypropylphosphinoethyl)methoxyethylamine), giving the complex [ mtc(n)(ns-cys-gly-cck )(pnp )]+. biodistri- bution studies in nude mice bearing cck -r positive a xenografts showed rapid and specific targeting to cck -r, a four- fold higher accumulation compared to nonreceptor-expressing tumors. the cck peptide was modified at its n-terminus by addition of two lys-his units and histidine was coupled to the side chain of the lysine ((lys-his) -cck ). the conjugate was labeled with fac- [ mtc(co) ] and biodistribution experiments showed negligible tumor accumulation in a -cck r xenografts. radiopeptides targeting the vasoactive intestinal peptide receptor (vpac- ) vip, an endogenous growth hormone, is a amino acid peptide with a wide range of biological activities such as vasodilatation, secretion of different hormones, immunomodulation and prolif- eration of normal and malignant cells. these actions are mediated trough the cell surface receptors vpac and vpac , which are expressed in various tissues in different densities. – these receptors, predominantly the vpac subtype, are over- expressed in the great majority of the most frequently occurring human tumors, including breast ( %), prostate ( %), pancreas ( %), lung ( %), colon ( %), stomach ( %), liver ( %), and urinary bladder ( %) carcinomas as well as lymphomas ( %) and meningiomas ( %). vip or vip derivatives labeled mainly with mtc, or more recently cu, have been explored extensively toward the in vivo detection/visualization of vpacr-expressing tumors (table ). aiming to label the vip peptide with mtc and to assess its properties for imaging colorectal cancer, the peptide was modified at the c-terminal by conjugation to a -aminobutyric acid (aba) spacer, followed by terminal amino acids (gly-gly-dala-gly), which provide a n donor atom set for metal stabilization. the pharmacokinetic profile of the resulting labeled peptide ( mtc-tp ) (table ) was more favorable than that of in- dtpa-octreotide or mtc-anti-cea in the same tumor model. preliminary clinical studies revealed that within min all of the tumors could be delineated. – aimed at targeting vip/pacap receptors in breast tumors, a new vip analog (tp ) derivatized at the c-terminal with a n s chelating unit (-(dap-(bma) )) has been synthesized and fully characterized. smooth-muscle relaxivity assays demon- strated functional integrity of the peptide conjugate tp , when compared with vip. the conjugate was labeled with cu and mtc in high yields, giving the stable metal-complexes cu-tp and mtc-tp , respectively. imaging and tissue distribution studies after injection of cu-tp , mtc-tp or mtc-tp in nude mice bearing human t d breast tumor xenografts, revealed a significantly greater ( . – -fold) receptor-specific tumor uptake for cu-tp . following these promising results, the same team has synthe- sized and characterized three new vip analogs (p , tp and tp ) containing also a n s chelating unit for metal coordination. the peptide conjugates tp , tp , tp and tp retained the biological activity as demonstrated by smooth muscle relaxivity assays and cell binding assays (t t human breast cancer line). the labeling yields of all analogs with cu were higher than %. in vitro receptor autoradiography studies showed . to . times greater quantity of cu-peptide analogs (including also tp ) bound to breast cancer tissue ( human breast cancer tissue) than to the normal breast tissue. these data indicated that a greater number of vapac receptors were expressed on malignant cells than on the normal. this finding was corroborated by rt-pcr studies using the same samples. cu-tp has been investigated as a pet imaging probe to detect prostate cancer, its metastatic or recurrent lesions and to determine the effectiveness of its treatment. biodistribution studies in pc tumor-bearing nude mice demonstrated rapid blood clearance, high stability and receptor-specific tumor uptake. the pet images delineated the xenografted pc in nude mice, as well table vasoactive intestinal peptide (vip) and analogsa b amino acid sequence: his-ser-asp-ala-val-phe-thr-asp-asn-tyr-thr-arg-leu-arg-lys-gln-met-ala-val-lys-lys-tyr-leu-asn-ser-ile-leu-asn-nh (vip) his-ser-asp-ala-vai-phe-thr-asp-mn-tyr-thr-arg-leu-arg-lys-gln-met-ala-val-lys-lys-tyr-leu-asn-ser-lle-leu-asn-aba-gly-gly-dala-gly (tp ) his-ser-asp-ala-val-phe-thr-asp-asn-tyr-thr-arg-leu-arg-lys-gln-met-ala-val-lys-lys-tyr-leu-asn-ser-lle-leu-asn-aba-lys-(dap-(bma) ) (tp ) his-ser-asp-ala-val-phe-thr-asp-asn-tyr-thr-lys-leu-arg-lys-gln-nle-ala-val-lys-lys-( -och , -oh)phe-leu-asn-ser-val-leu-thr-aba- lys-(dap-(bma) ) (tp ) ac-his-ala-asp-ala-val-phe-thr-glu-asn-tyr-thr-lys-leu-arg-lys-gln-nle-ala-ala-lys-c(-lys-tyr-leu-asn-asp-)-leu-lys-lys-ala-ala-ala- aba-lys(dap-bma) ) (tp ) his-ser-asp-gly-lle-phe-thr-asp-ser-tyr-ser-arg-tyr-arg-lys-gln-met-ala-val-lys-lys-tyr-leu-ala-ala-val-leu-aba-lys-(dap-(bma) ) (tp ) his-ser-asp-deg-val- -cl-dphe-thr-asp-asn-tyr-thr-arg-leu-arg-lys-gln-leu-ala-val-lys-lys-tyr-leu-asn-ser-ile-leu-asn-nh (vp ) his-dphe-thr-asp-asn-tyr-thr-arg-leu-arg-lys-gln-leu-aib-val-lys-lys-tyr-leu-nh (vd ) his-acp-dphe-thr-asp-asn-tyr-thr-arg-leu-arg-lys-gln-leu-aib-val-lys-lys-tyr-leu-nh (vd ) a aba = -aminobutyric acid; dap = diaminopropionic acid. b amino acid residues in bold type are important for the biological activity of the peptide. some chelating units are also displayed in bold type. dalton trans. this journal is © the royal society of chemistry d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g as spontaneous occult pc in tramp ii mice, which was not delineated by f-fdg in the same animal model. as expected, cu-tp did not detect prostate with hyperplasia in tramp i, confirming the specific nature of the probe. brought together, the results confirm the potential of cu-tp for pet imaging of prostate cancer and its metastatic or recurrent lesions. thakur et al. also studied the ability of cu-tp to detect breast cancer (bc) in mmtvneu mice using f-fdg as a gold standard. pet imaging studies in mice have shown that cu- tp could identify all malignant lesions that overexpressed vpac receptors. interestingly, benign tumors that did not express the receptor could only be imaged by f-fdg and not by cu- tp . a set of three other vip analogs (vp , vd and vd ) have been directly labeled with the moiety fac-[ mtc(co) ]+, and the tumor-targeting properties of the resulting radioactive species evaluated in human colon carcinoma cells (ptc cells) and in a animal tumor model. despite the specific in vitro cell uptake of mtc(co) -labeled vp analog, its tumor uptake was modest. radiopeptides targeting the glucagon-like peptide- receptor (glp- ) glucagon-like peptide- is a intestinal hormone that plays an important role in glucose metabolism and homeostasis. glp- stimulates postprandial insulin secretion from pancreatic b-cells in a manner dependent on blood-glucose levels. this receptor was shown to be overexpressed in various neuroendocrine tumors, particularly in human insulinomas, as well as in brain tumors and embryonic tumors but not in carcinomas or lymphomas. additionally, glp- r could not be identified in specific tissue compartments of several organs (e.g. pancreas, intestine, and lung). such findings have made this receptor a promising molecular target for in vivo imaging or therapeutic proposals. , the proof-of-principle for in vivo glp- receptor targeting was provided in a pioneer study by gottarhardt et al., who detected insulinomas in nedh rats and rinm f cells, using radioiodinated glp- ( – )amide and exendin- ([ i]glp- ( – )amide and [ i]exendin- , table ). these promising results prompted further studies with radiometallated ( in, ga and mtc) glp- analogs. dtpa conjugates of exendin- were synthesized and labeled with in. among others, the stable radiometallated compound table glucagon-like peptide (glp- ) analogsa amino acid sequence: his-ala-glu-gly-thr-phe-thr-ser-asp-val-ser-ser-tyr-leu-glu-gly- gln-ala-ala-lys-glu-phe-ile-ala-trp-leu-val-lys-gly-arg-nh (glp- ( – )amide) his-ser-asp-gly-thr-phe-thr-ser-asp-leu-ser-lys-gln-met-glu -ala- val-arg-leu-phe-ile-glu-trp-leu-lys-asn-gly -pro-ser -gly-ala- pro - ser-(lys )-nh (lys -exendin- ) his-gly-glu-gly-thr-phe-thr-ser-asp-leu-ser-lys-gln-met-glu -ala- val-arg-leu-phe-ile-glu-trp-leu-lys-asn-gly -pro-ser -gly-ala- pro - ser-(lys )-nh (lys -exendin- ) a amino acid residues in bold type are important for the biological activity of the peptide. [lys (ahx-dtpa- in)nh ]exendin- accumulates significantly and specifically in the tumor of rip tag mice, a transgenic mouse model of pancreatic b-cell carcinogenesis, which exhibits a glp- r expression comparable with human insulinoma. the high tumor uptake resulted in excellent tumor visualization by pinhole spect/mri and spect/ct. , the therapeutic potential of [lys (ahx-dtpa- in)nh ]exendin- has been evaluated also in the same transgenic mouse model (rip tag mice). a single injection of the radiopeptide resulted in a reduction of the tumor volume by up to % in a dose-dependent manner without significant acute organ toxicity. the authors claim that these results prove that the auger-emitting compound is able to produce relevant therapeutic effects. the same radiopeptide successfully detected tumors in patients with insulinomas that were not detected by other imaging modalities. following the successful use of [lys (ahx-dtpa- in)nh ]exendin- for the detection of insulinomas in rodents and humans, the radiopeptide [lys (ahx-dota- in)nh ]exendin- has been prepared and tested in six patients. glp- r scans detected the insulinomas in all six cases. by using a g-probe intra-operatively, the radiopeptide allowed successful surgical removal of all insulinomas, presenting a high density of glp- r as confirmed by autoradiography. to overcome some of the drawbacks associated with the use of in for imaging, the new radiopeptides [lys (ahx-dtpa- ga)nh ]exendin- and [lys (ahx-hynic- mtc/edda)nh ]exendin- were prepared. biodistribution studies in rip tag mice have shown a high tumor uptake for [lys (ahx-dtpa- ga)nh ]exendin- , comparable to that of [lys (ahx-dtpa- in)nh ]exendin- and significantly higher than that of [lys (ahx-hynic- mtc/edda)nh ]exendin- . however, the lower tumor uptake obtained with the mtc complex did not result in reduced image quality as all the radiopetides showed high tumor-to-background ratios. such results make mtc- and ga-labeled exendin- suitable candidates for clinical glp- r imaging studies. the biodistribution profile of the new radiopeptide [lys (dota- ga)nh ]exendin- was evaluated in balb/c nude mice with subcutaneous ins- tumors and compared with that of [lys (dota- in)nh ]exendin- and [lys (dtpa- in)nh ]exendin- in the same animal model. the chelator used did not affect the biodistribution profile of [lys ]exendin- as evidenced by the almost identical concentrations of [lys (dota- in)nh ]exendin- and [lys (dtpa- in)nh ]exendin- in all tissues examined. the biodistribution of the latter was also iden- tical to the biodistribution of [lys (dtpa- in)nh ]exendin- . tumor uptake of ga-labelled [lys (dota)]exendin- was lower than tumor uptake of in-labelled [lys (dtpa)]exendin- . despite this difference in insulinoma uptake, the authors claim that clinical studies should be conducted to elucidate the potential of [lys ( ga-dota)]exendin- for insulinoma pet imaging in humans. peptides targeting chemokine receptor cxcr chemokines are structurally related small glycoproteins ( – kda) that chemoattract leukocytes by binding to cell surface receptors. cxcr is highly expressed in breast and prostate cancer, and plays a crucial role in tumor metastasis. , , this journal is © the royal society of chemistry dalton trans. d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g fig. dtpa–actz peptide conjugate. fig. labeling of sdf- a with m tc. additionaly, chemokines and their receptors are also associated with cardiac disfunction. – aiming to prepare novel radiolabeled probes for the in vivo imag- ing of cxcr expression on tumors, koglin et al. radiolabeled cpcr , a cyclic peptide, and tested its biological properties. the authors claim that the tracer binds with high affinity and specificity in an antagonistic manner to its binding site and allowed a clear delineation of cxcr positive tumors in vivo. however, further optimization of the in vivo behavior of the tracer needs to be done. hanaoka et al. designed a cyclic -residue peptidic cxcr inhibitor, actz (fig. ), attached it to dtpa through the side chain of dlys , and labeled the resulting dtpa–actz conjugate with in. biodistribution studies in nude mice bearing pancreatic carci- noma aspc- have shown that the receptor-specific accumulation of [ in-dtpa–actz ] in the cxcr -expressing tumor was greater than that in the blood or muscle. the authors claimed that this radiopeptide was a potential radiopharmaceu- tical for the imaging of cxcr expression in metastatic tumors in vivo. aimed at the non-invasive quantification of cxcr expression in vivo, for the understanding of its importance in diverse processes including cardiac response to injury, recombinant sdf- a was derivatized with a tetradentate n s chelator (s- acetylmercaptoacetyltriserine: mas ), and labeled with mtc, yielding the highly stable complex [ mtc-mas ]-sdf- a (fig. ). biodistribution studies in a rat model of ischemia reperfusion have shown that after induction of myocardial infarction, cxcr expression levels in the myocardium increased more than -fold, as quantified using [ mtc-mas ]-sdf- a and confirmed using confocal immunofluorescence. the main conclusion drawn by the authors is that cxcr levels can be quantifiable in vivo in a variety of animal models, using appropriate radioactive probes such as [ mtc-mas ]-sdf- a. peptides targeting neuropeptide y receptors neuropeptide y (npy), a member of the pancreatic polypeptide family, consists of amino acids residues and binds to the five y receptor subtypes (y , y , y , y and y ) with nanomolar dalton trans. this journal is © the royal society of chemistry d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g table neuropeptide y (npy) and analogsa amino acid sequence: tyr-pro-ser-lys-pro-asp-asn-pro-gly-glu-asp-ala-pro-ala-glu-asp- met-ala-arg-tyr-tyr-ser-ala-leu-arg-his-tyr-ile-asn-leu-ile-thr- arg-gln-arg-tyr-nh (human npy) tyr-pro-ser-lys-pro-asp-phe-pro-gly-glu-asp-ala-pro-ala-glu-asp- met-ala-arg-tyr-tyr-ser-ala-leu-arg-his-tyr-ile-asn-leu-ile-thr- arg-pro-arg-tyr-nh ([phe ,pro ]-npy) ile-asn-pro-ile-tyr-arg-leu-arg-try-nh (bvd ) ile-asn-pro-lys-ile-tyr-arg-leu-arg-tyr-nh ([lys ]-bvd ) ile-asn-pro-nle-bpa-arg-leu-arg-tyr-nh (npy ) a amino acid residues in bold type are important for y r-binding. affinity (table ). , npy receptors are promising candidates in the oncology field since y r and/or y r have been found to be expressed in neuroblastoma, breast carcinomas, ovarian cancers, the ewing sarcoma family of tumors, and high-grade glioblastomas among others. – beck–sickinger et al. labelled a y receptor-preferring npy analog (ac-[ahx - ,lys ,ala ]- npy) with the organometallic fac-[ mtc(co) ]+ moiety using pada ( -picolylamine-n,n-diacetic acid) as a chelator. a stable radiopeptide with selective y binding in neuroblastoma cells was obtained. with regard to breast cancer, reubi et al. have shown that y r is expressed in % of all tumors in large quantities and in % of the examined metastases. , interestingly, a shift of the receptor subtype from y in healthy tissue to y during neoplasm was found. thus, y r selective peptides have been considered promising for imaging and therapy of breast cancer. , a y r-specific npy analog was labelled with in, using dota, and the resulting complex [ in-dota- lys ,phe ,pro ]-npy showed a high kidney and low tumor uptake in mcf- breast cancer xenografts. the same npy analog was labeled with mtc using a n a-histidinyl acetyl (n ahis-ac) chelator and evaluated in breast cancer patients. a clear tumor uptake of [ mtc–n ahis-ac-lys ,phe ,pro ]-npy was observed, whereas normal tissues and organs only showed background radiation. the short npy analog [pro , nle , bpa , leu ]-npy( – ) (npy , table ), with high affinity and selectivity for y receptor, was labelled with mtc and ga using pznn and dota chelators, respectively. the biological interest of such radiopeptides has still to be demonstrated. another short npy analog, [pro , tyr , leu ]-npy( – ) (bvd ), conjugated to dota at different positions was also described and the affinity to y r evaluated. it has been shown that the introduction of the bfc at the n-terminus of the peptide led to poor affinity, but the conjugate [lys (dota)]-bvd (table ) and the respective cu-complex presented good affinity in the mcf- breast cancer cell line. peptides targeting the melanocortin (mc ) receptor a-melanocyte-stimulating hormone (a-msh), a linear tride- capeptide (table ), binds to five subtypes of melanocortin receptors (mc –mc ). among these, the melanocortin type receptor (mc r) is overexpressed in both melanotic and amelanotic murine and human melanoma cells. – furthermore, table a-msh and analogsa amino acid sequence: ac-ser-tyr-ser-met -glu -his-phe -arg-trp-gly-lys-pro-val-nh (a-msh) ac-ser-tyr-ser-nle -glu -his-dphe -arg-trp-gly-lys-pro-val-nh (ndp-msh) ac-nle -asp -his-dphe -arg-trp-gly-lys-nh (napamide) ac-cys -cys -glu -his-dphe -arg-trp-cys -lys-pro-val-nh (ccmsh) ac-cys -cys -glu -his-dphe -arg-trp-cys -arg -pro-val-nh (ccmsh(arg )) ac-cyclo[cys -glu -his-dphe -arg-trp-cys ]-lys-pro-val-nh (cmsh) ac- nle -cyclo[asp -his-dphe -arg-trp-lys ]-nh (melanotan-ii: mtii) bala -nle -cyclo[asp -his-dphe -arg-trp-lys ]-nh (balamt-ii) bala -nle -asp -his-dphe -arg-trp-lys -nh (mshoct) a amino acid residues in bold type are important for the biological activity of the peptide. more than % of human metastatic melanoma samples have also been identified to display mc r receptors. thus, mc r became a potential target for the diagnosis and therapy of melanoma and metastases, and several linear and cyclic radiolabeled a-msh analogs have been studied as candidates for mc r targeting (table ). , , , structure–bioactivity studies have shown that the minimal sequence of a-msh required for biological activity is his-phe-arg-trp, and that the replacement in a-msh of met and phe by nle and dphe, respectively, leads to the potent [nle ,dphe ]-amsh analog (ndp-msh, ic = . nm), which is enzymatically stable and has a long half-life. the peptide ndp-msh was radiolabeled with mtc and re using as bfcs mercapto-acetylglycylglycine (mag ) or the tetrapeptide ac-cys-gly-cys-gly (cgcg). the short linear peptide [bala ,nle ,asp ,dphe ,lys ]-amsh( – ) (mshoct) was conjugated to dota and to pznn through the n-terminus and labeled with in and mtc, respectively. , despite the im- proved potency of ndp-msh and mshoct analogs, the resulting radiolabeled peptides have shown poor in vivo behavior. another analog, [ac-nle ,asp ,dphe ]-amsh( – ) (napamide), with high affinity for mc r, was also conjugated to dota and to pznn through the lateral chain of lys . the dota derivative was labeled with in, ga and cu, while the pznn-conjugate was labeled with mtc. – in vivo evaluation has shown that the cu-labeled peptide was unstable, with high liver and kidney uptake. the other labeled peptides were stable in vivo but have shown only a moderate tumor uptake. to reduce kidney reabsorption, several glycosylated derivatives of napamide were conjugated to dota and labeled with in. in vivo studies (b f -melanoma mice) confirmed the improvement of pharmacokinetics but the tumor uptake and retention was relatively low. several homobivalent napamide derivatives containing dota or pznn were labeled with in and with the tricarbonyl core, respectively. , in the case of in, the dimeric peptides displayed excellent receptor affinity and internalization, but the tumor uptake was low and the kidney accumulation high, compared to the monomeric in-dota-napamide. cyclized a-msh analogs have also been used to improve binding affinity, in vivo stability, and receptor selectivity. among this journal is © the royal society of chemistry dalton trans. d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g fig. structures of ac-reccmsh, m tc-ccmsh(arg ), and in-dota-re-ccmsh(arg ). cyclization strategies, the disulfide-, lactam- and metal-based cyclizations have been the most explored. , , the peptide [cys , ,dphe ]a-msh (cmsh), cyclized via a disulfide bond, was conjugated to dota and labeled with in. in vivo evaluation of the resulting radiopeptide in-dota-cmsh has shown moderate tumor uptake and high kidney accumulation. another approach consisted of the cyclization of an a-msh analog through site-specific rhenium (re) and technetium (tc) metal coordination. such cyclic analogs were structurally characterized and their ability to bind melanoma cells evaluated. it was found that the metal promotes cyclization by coordination to cys , , sulfhydryls and to cys amide nitrogen (fig. ). the resulting re-peptide complex re-[cys , , ,dphe ]-a-msh( – ) (reccmsh), displayed a high receptor-binding affinity. the cor- responding mtc complex mtc-ccmsh, although having high kidney uptake, successfully targeted b f -melanoma becoming the proof-of-principle for the potential use of metal-cyclized radiolabeled compounds for melanoma imaging or therapy. another interesting approach was the conjugation of the metal- cyclized complex re-ccmsh to dota, followed by labelling with in. compared to the linear analog in-dota-ccmsh, the re-cyclized radiopeptide in-dota-re-ccmsh presented increased tumor-targeting capacity, higher tumor retention and enhanced renal clearance in murine melanoma-bearing mice. by comparing the two metal-based cyclized ccmsh analogs, in-dota-re-ccmsh versus mtc-ccmsh, similar tumor up- take was found, but the re-mediated cyclized radiopeptide had an enhanced whole-body clearance and a higher tumor-to- blood ratio. despite the favorable features of in-dota-re- ccmsh, a relatively high level of radioactivity still remained in the kidneys. aiming to reduce kidney retention, four new in- dota-derivatized re-ccmsh analogs were designed, and the analog in-dota-re-ccmsh(arg ) (lys replaced by arg, fig. ) showed the highest tumor uptake and the lowest kidney radioactivity accumulation in a murine melanoma model. the analog ccmsh(arg ) was also cyclized through labelling with mtc (fig. ). also in this case, the replacement of lys by arg improved tumor uptake and reduced kidney accumulation. com- pared to the re-cyclized analog in-dota-re-ccmsh(arg ), mtc-ccmsh(arg ) exhibited favorable and comparable tumor- targeting properties, and both allowed clear micro-spect/ct images of flank melanoma tumors as well as of b f pulmonary melanoma metastases, with mtc-ccmsh(arg ) providing im- ages with greater resolution of metastatic lesions. these promising properties prompted the direct labeling of the linear peptide ccmsh(arg ) with re, yielding the complex re-ccmsh(arg ). , its therapeutic efficacy was assessed in c bl mice bearing b /f murine melanoma tumors and in txm- human melanoma xenografted scid mice. in both, the therapeutic effect of re-ccmsh(arg ) on tumor growth was dose-dependent. for pet imaging of mc r, the dota-re-ccmsh(arg ) conjugate was labeled with cu and y. complex cu- dota-re-ccmsh(arg ) had high radioactivity accumulation in non-target organs, due most likely to the in vivo instability of the complex and consequent release of cu. to avoid such behaviour, the dota chelator was replaced by cbte a. the in vitro mc r-binding properties of cbte a-re-ccmsh(arg ) were unchanged relative to dota-re-ccmsh(arg ). fur- thermore, the complex cu-cbte a-re-ccmsh(arg ) pre- sented a b f -melanoma uptake comparable to cu-dota-re- ccmsh(arg ) but a significantly higher ratios of tumor to non- target tissues. in vivo studies have also shown that cu-cbte a- re-ccmsh(arg ) provided better pet images than y-dota- re-ccmsh(arg ), due to increased tumor retention and kidney clearance. still for pet, ga-dota-re-ccmsh(arg ) of low and high specific activity was prepared and evaluated. , despite some differences in the biological profile, in both cases the tumor uptake was low compared to the linear a-msh analog ga- dota-napamide in the same melanoma animal model. such results indicated that the re-mediated cyclization did not bring significant advantages when the radiometal is ga. to evaluate the therapeutic potential of these cyclic peptides, lu-dota- re-ccmsh(arg ) was prepared. its in vivo evaluation showed a high and prolonged tumor uptake, but also high non-specific kidney accumulation. , the tumor growth rate of treated mice was substantially reduced. the authors have also studied the same peptide conjugate labeled with pb. they have found dramatic dose-dependent reductions in tumor growth rates for pb-dota-re(arg )ccmsh, and postmortem histopatholog- ical examination of the tumor and other major organs showed no sign of primary or metastatic melanoma. all treated groups displayed a significant improvement in mean survival time with minor kidney damage. a heterobivalent complex, mtc-rgd-lys-ccmsh(arg ), was synthesized for dual imaging of integrin and mc receptor- expressing tumors. biodistribution studies in b f melanoma- bearing c bl mice have shown a tumor accumulation and retention higher than those found for mtc-ccmsh(arg ), but an extremely high kidney uptake was observed. as an alternative to metal-cyclized a-msh analogs, a promis- ing cyclization approach based on a side chain lactam-bridge was recently introduced. using the potent lactam-cyclized dalton trans. this journal is © the royal society of chemistry d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g fig. structures of m tc-pznn-balamt-ii and in-dota-nle-cycmshhex . agonist melanotan ii (mt-ii) as model, the cyclic peptide bala-nle-c[asp-his-dphe-arg-trp-lys]-nh (balamt-ii) was synthesized, conjugated to the pznn chelator, and labeled with fac-[ mtc(co) ]+ (fig. ). , the radiometallated peptide mtc-(co) -pznn-balamt-ii had high binding affinity and a remarkable internalization in b f cells when compared with its linear analog and with the metal-cyclized mtc-ccmsh. , in b f melanoma-bearing mice, mtc-(co) -pznn-balamt- ii has also showed a significant mc r-mediated tumor uptake comparable to that obtained for metal-based cyclic peptides mtc- ccmsh and mtc-ccmsh(arg ). , longer lactam-based cyclic a-msh analogs, cycmsh and glyglu-cycmsh ( -amino acid ring), were conjugated to dota, through the peptide n-terminal, and labeled with in. both radiopeptides exhibited high receptor-mediated tumor up- take in b f melanoma-bearing mice. these values were com- parable to those found for the lactam-based cyclic mtc-pznn- balamt-ii and for the metal-cyclized in-dota-re-ccmsh, but lower than those found for in-dota-re-ccmsh(arg ). the introduction of glyglu in the cycmsh sequence has reduced kidney accumulation. these results have prompted the synthesis of ga-dota- glyglu-cycmsh and its biological assessment in b /f melanoma-bearing mice. kidney accumulation higher than tumor uptake was observed, but both flank primary b /f melanoma and b /f pulmonary melanoma metastases could be clearly visualized by spect/ct imaging. to evaluate the effect of dota position in the peptide backbone, glyglu-cycmsh was acetylated in the n-terminus, conjugated to dota through the lys in the cyclic ring, and labeled with in. the overall pharmacokinetic profile of the resulting radiopeptide did not improve. the same authors also evaluated the effect of the ring size on biodistribution. thus, dota was conjugated to the n-terminus of mt-ii ( - amino acid peptide ring) and labeled with in (fig. ). the resulting radiopeptide, in-dota-nle-cycmshhex presented a rapid and high tumor uptake, a prolonged tumor retention and a moderate kidney accumulation. when compared to in-dota- glyglu-cycmsh with a -amino acid ring, the reduction of the peptide ring size dramatically increased the melanoma uptake and decreased the renal retention. , the tumor-targeting properties and pharmacokinetics of in-dota-nle-cycmshhex were more favorable than those presented by the first lactam-cyclized -amino table neurotensin and analogsa amino acid sequence: pglu-leu-tyr-glu-asn-lys-pro-arg-arg-pro-tyr-ile-leu-oh (nt) h-arg-arg-pro-tyr-ile-leu-oh (nt( - )) lys-w(ch -nh)-arg-pro-tyr-ile-leu-oh (nt-vi) lys-w(ch -nh)-arg-pro-tyr-tle-leu-oh (nt-xi) ahx-arg-me-arg-pro-tyr-tle-leu-oh (nt-xii) arg-me-arg-pro-dmt-tle-leu-oh (nt-xix) ac-lys-pro-me-arg-arg-pro-tyr-tle-leu-oh (nt- . ) a amino acid residues in bold type are important for the biological activity of the peptide. acid ring radiopeptide mtc-pznn-balamt-ii. , finally, the lactam-cyclized in-dota-nle-cycmshhex displayed a tumor- to-kidney ratio comparable to the best metal-cyclized radiopeptide in-dota-re-ccmsh(arg ), suggesting a high potential of lactam-based cyclic radiolabeled a-msh analogs for mc r- melanoma targeting. peptides targeting the neurotensin (nt) receptor neurotensin (nt) is a amino acid peptide (table ) that binds to three nt receptor subtypes (nts -nts ). most nt biological effects are mediated by nts , and nt( – ) is the minimal sequence that mimics the effects of full-lengh nt. overexpression of nt receptors has been found in many tumors, namely ewing’s sarcoma, meningiomas, sclc, mtc, ductal pancreatic adenocarcinomas (> % overexpression) and invasive ductal breast cancers. – numerous nt( – ) analogues (table ) containing the (nahis)ac chelator and labeled with mtc or re have been synthesized. – among all the radiometallated neurotensin analogs, [ mtc(co) -(nahis)ac-nt-xix] displayed the highest tumor uptake with low accumulation in non-target organs, particularly in kidneys. , encouraging therapeutic effects were also obtained in nude mice injected with the re- analog. nts -binding nt analogs conjugated to dtpa or dota chelators have been synthesized and labeled with in. these radiopeptides had unfavorable ratios of tumor to non-target organs. in order to increase tumor uptake and reduce kidney accumulation, two novel families of dtpa-nt analogs have been proposed. the first family comprises a series of dtpa-nt( – ) analogs (dtpa-nt-vi, dtpa-nt-xi, dtpa-ahx-nt-xii and this journal is © the royal society of chemistry dalton trans. d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g fig. structures of m tco-rp- and m tco -demobesin . dtpa-ahx-nt-xix), which share the same peptide sequence with the analogs bearing the (na-his)ac moiety described previously. the second series of dtpa-peptides are analogs of nt( – ) peptide (table ), in which dtpa was coupled to the e-nh of lys . structure activity studies demonstrated that the attachment of dtpa induces an important loss of affinity, unless the distance between the bfca and the biologically active sequence (nt( – )) is increased. among all the radiopeptides, in-dtpa-nt- . was the most promising, with high tumor uptake but still with a high kidney accumulation. in spite of the kidney retention, the tumor-to-intestine ratio was higher than that found for [ mtc(co) -(nahis)ac-nt-xix]. radiopeptides targeting the gastrin-releasing peptide (grp) receptor bombesin (bbn, pglut -gln -arg -leu -gly -asn -gln -trp - ala -val -gly -hist -leu -met -nh ) is an amphibian homo- logue of mammalian gastrin-releasing peptide (grp) that has very high affinity and specificity for the grp receptor (grpr). to date, four different grpr subtypes have been characterized, and overexpression of grprs has been observed on a variety of tumors including breast, prostate, pancreatic, and small-cell lung cancer (sclc). the c-terminal – amino acid sequence of bbn is essential for high-affinity binding to grpr. therefore, various bbn analogs based on the bbn[ – ]nh agonist have been used by many research groups to design radiometallated peptides suitable for diagnostic and therapeutic of grpr-positive tumors. profiting from the diversified chemistry of technetium, different strategies have been used for labeling bbn derivatives with this ra- diometal. such strategies involved the use of tc-hynic, [tco] +, trans-[tco ]+, fac-[tc(co) ]+ and the tc(iii) ‘ + ’ approach, in combination with a variety of bifunctional chelators. – the pre-clinical evaluation of these mtc-labelled bbn derivatives led to some encouraging results, but only a few have been tested in the clinic. the radiopeptide mtc-rp- (fig. ), containing a n s chelator coupled to bbn[ – ] via a gly- -aminovaleric acid, was able to identify primary breast cancer and prostate cancer and their metastatases. a more recent achievement has been the introduction of mtc-demobesin ([ mtc–n -dphe ,leu- nhet ,des-met ]-bbn - ), which contains a tco + core and a linear tetraamine as bfc (fig. ). mtc-demobesin exhibited the highest absolute tumor uptake described in the literature for a pc xenograft model, while showing a high stability in vivo and a favourable pharmacokinetic profile. , this radiopeptide has an antagonist character and does not internalize significantly into pc- cells, which suggests a change of paradigm on the diagnostic and prrt of grpr-positive tumors. the bbn[ – ]nh analog has been labeled with cu using dota, cb-te a and nota-derivatives and different linkers to modulate pharmacokinetics. , – the resulting radioconju- gates behave as agonists and were able to target grpr-positive xenografted human tumors in a specific way. due to a prolonged retention of radioactivity in kidneys and gastrointestinal tract, the cu-bbn-dota derivatives have showed less favourable target– non-target ratios compared to the radioconjugates-cb-te a and nota. these differences have been considered to reflect the dalton trans. this journal is © the royal society of chemistry d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g fig. chemical structure of [ cu-no a-(x)-bbn[ – ]]. highest in vivo stability of cu(ii) complexes with cb-te a and nota chelators. the most promising results were reported by smith and co-workers for the radiopeptide [ cu-no a-(x)- bbn[ – ]], where no a ( , , -triazacyclononane- , -diacetic acid) is a nota derivative and x are pharmacokinetic modifiers (fig. ). the radiopeptide [ cu-no a-(amba)-bbn[ – ]], containing the shorter and more hydrophilic linker, exhibited the highest tumor accumulation and the fastest clearance from non- target tissues, emerging as a good candidate for further evaluation in humans. several bbn derivatives were also labeled with the trivalent radiometals / ga, in and lu, using dota-like chelators and different linkers to improve the pharmokinetics. – two of these derivatives, ga-dotabom and lu-amba, underwent clinical trials for pet detection or prrt of prostate cancer (pc), respectively. ga-dotabom allowed the detection of malignant pc lesions in out of patients. within a phase i study and aiming at pc therapy, lu-amba ( lu- dota-g- -aminobenzyl-bbn - ) detected lesions in out of patients. concluding remarks and perspectives peptide-based nuclear tools for molecular imaging and therapy have now become an established approach, mainly due to the success achieved with somatostatin analogs, increasing knowledge into the cell and molecular biology of malignancies, advances in the coordination chemistry of radiometals, and bioconjugation. numerous radiometallated peptides to target receptors over- expressed in tumor cells have been synthesized and their biological properties studied and correlated with chemical structures. how- ever, most of those metal complexes have been evaluated only in animal models, still being under investigations that aim to optimize in vivo stability, target-affinity and target–non-target ratios. the advantages of using homo- or heteromultimeric radiometallated peptides based on agonists or antagonists must still be addressed in the future. acknowledgements the fundação para a ciência e tecnologia (fct) is acknowl- edged for financial support (poci/sau-fcf/ / and ptdc/qui-qui/ / ). references world health organization fact sheet no. – cancer, . j. c. reubi, endocr. rev., , , – . h.-j. wester, clin. cancer res., , , – . r. von der meel, w. m. gallagher, s. oliveira, a. e. o’connor, r. schiffelers and a. t. byrne, drug discovery today, , , – . m. schottellius and h.-j. wester, 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a. nunn and j. c. reubi, eur. j. nucl. med. mol. imaging, , , – . m. e. maddalena, j. fox, j. chen, w. feng, a. cagnolini, k. e. linder, m. f. tweedle, a. d. nunn and l. e. lantry, j. nucl. med., , , – . r. thomas, j. chen, m. m. roudier, r. l. vessella, l. e. lantry and a. d. nunn, clin. exp. metastasis, , , – . dalton trans. this journal is © the royal society of chemistry d ow nl oa de d by i ns ti tu to t ec no lo gi co e n uc le ar ( it n ) on f eb ru ar y p ub li sh ed o n f eb ru ar y o n ht tp :/ /p ub s. rs c. or g | d oi : . /c d t g view online http://dx.doi.org/ . /c dt g [pdf] music therapy when death is imminent: a phenomenological inquiry | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /jmt/thy corpus id: music therapy when death is imminent: a phenomenological inquiry @article{economos musictw, title={music therapy when death is imminent: a phenomenological inquiry}, author={a. economos}, journal={journal of music therapy}, year={ }, volume={ }, pages={ – } } 	a. economos 	published 	psychology, medicine 	journal of music therapy music therapists have described powerful case examples and personal experiences of providing music therapy for clients who are actively dying that suggest a complex experience that merits further exploration. this phenomenological study was conducted to gain a better understanding of the lived experience of music therapists working with clients who are actively dying. four music therapists ( female, male), with an average of years' hospice care experience, participated in semi-structured… expand view on wolters kluwer libres.uncg.edu save to library create alert cite launch research feed share this paper citationsbackground citations view all figures and topics from this paper 	 figure 	cessation of life 	countertransference (psychology) 	esthetics (discipline) 	experience 	categories paper mentions blog post music therapy when death is imminent: a phenomenological inquiry information for practice july one citation citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency exit music: the experience of music therapy within medical assistance in dying 	s. black, l. bartel, g. rodin 	psychology, medicine 	healthcare 	 	pdf 	view excerpt, cites background save alert research feed references showing - of references sort byrelevance most influenced papers recency lessons learned from the dying: stories from a music therapist 	amy hammel zabin 	psychology 	 	 	highly influential 	view excerpts, references background save alert research feed “patient declined”: contemplating the psychodynamics of hospice music therapy 	maya k. marom 	psychology 	 	 	pdf 	view excerpts, references background and methods save alert research feed approaching the end of life: a role for music therapy within the context of palliative care models 	b. hogan 	sociology 	 	 	view excerpt, references background save alert research feed assessing the unique needs of hospice patients: a tool for music therapists 	elizabeth l. maue-johnson, carla l tanguay 	medicine 	 	 save alert research feed an intersubjective approach to music therapy: identification and processing of musical countertransference in a music psychotherapeutic context 	benedikte b. scheiby 	psychology 	 	 	view excerpts, references background save alert research feed music therapy entrainment: a humanistic music therapist's perspective of using music therapy entrainment with hospice clients experiencing pain 	l. dimaio 	psychology 	 	 	view excerpt, references background save alert research feed music therapy with imminently dying hospice patients and their families: facilitating release near the time of death 	r. krout 	medicine 	the american journal of hospice & palliative care 	 	 	pdf 	view excerpts, references background save alert research feed perceptions of family members of palliative medicine and hospice patients who experienced music therapy 	l. gallagher, r. lagman, + authors l. rybicki 	medicine 	supportive care in cancer 	 	 	view excerpt, references background save alert research feed music therapy practice in special education and children's hospice: a systematic comparison of two music therapists' strategies with three preadolescent boys 	k. mcferran, e. shanahan 	psychology 	 	 	view excerpt, references background save alert research feed understanding music as a temporal-aesthetic way of being: implications for a general theory of music therapy 	b. abrams 	psychology 	 	 	view excerpt, references background save alert research feed ... ... related papers 	abstract 	figures and topics 	paper mentions 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators blog posts, news articles and tweet counts and ids sourced by altmetric.com terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue dog visitation’s impact on seniors’ social support: comparing group and individual conditions by lindsay burton bhsc, university of calgary, a thesis submitted in partial fulfillment of the requirements for the degree of master of science in the college of graduate studies (interdisciplinary studies) the university of british columbia (okanagan) july © lindsay burton, ii	 the undersigned certify that they have read, and recommend to the college of graduate studies for acceptance, a thesis entitled: dog visitation’s impact on seniors’ social support: comparing group and individual conditions submitted by lindsay burton in partial fulfillment of the requirements of the degree of master of science . colin reid, school of health and exercise sciences, ubco supervisor, professor (please print name and faculty/school above the line) alan davidson, school of health and exercise sciences, ubco supervisory committee member, professor (please print name and faculty/school in the line above) cristina caperchione, school of health and exercise sciences, ubco supervisory committee member, professor (please print name and faculty/school in the line above) university examiner, professor (please print name and faculty/school in the line above) john tyler binfet, faculty of education, ubco external examiner, professor (please print name and university in the line above) (date submitted to grad studies) additional committee members include: james gillett, mcmaster university (please print name and faculty/school in the line above) (please print name and faculty/school in the line above) july iii	 abstract introduction: social support (ss) is an important determinant of senior health. dogs are an underutilized modality for seniors’ ss promotion, and dog visitation programs are emerging to address this underutilization. dogs impact ss in two ways according to the social support theory, as an agent of ss (direct) or as a facilitator of ss (indirect). purpose: to replicate naturalistic interventions to determine whether visiting dog programs positively impact ss, whether there are differences between individual and group conditions, and whether differences are primarily due to direct or indirect effects of dog visiting programs. methodology: an exploratory quasi-experimental comparative intervention study design, with mixed methods, was utilised. the six-week intervention involved participants’ (n= ) exposure to a dog and its handler to measure the influence on participants’ perceived ss. two conditions, group and individual, were compared to explore differences in visiting dog programs. quantitative measurements of social support were taken at baseline, immediately post intervention, and at six weeks post intervention. qualitative semi-structured interviews were conducted throughout the intervention along with field notes. six weeks following the intervention a focus group was held to determine longer-term effects. quantitative data were analyzed using mixed measures anova and qualitative data were analyzed using interpretive description. results: mixed measures anova were not significantly different between conditions, over time, or over time between conditions. the main effect in the individual condition was indirect, that is, facilitation of interaction between participant and handler. the group condition formed the primary bond with the visiting dog during the intervention (direct), however the group was able to maintain a connection because of the program six weeks post intervention (indirect). reminiscence emerged as an important component of the visitation program. conclusion: the visiting dog program produced positive influence on participants. the lasting impact of the program was the impression left by the relationship built between participants and the visiting dog. future studies should incorporate reminiscence into the research design to further investigate its influence. iv	 preface this dissertation is original, unpublished, independent work by the author, l. burton. data collection and all materials are covered under ubc okanagan behavioural research ethics board certificate number h - . use of the visiting dog in data collection is covered under the ubc animal care certificate number a - . v	 table of contents abstract ........................................................................................................................................ iii	 preface ........................................................................................................................................... iv	 table of contents ........................................................................................................................... v	 list of tables ............................................................................................................................... vii	 list of figures ............................................................................................................................ viii	 glossary ......................................................................................................................................... ix	 acknowledgements ....................................................................................................................... xi	 chapter : introduction ................................................................................................................ 	 literature review .......................................................................................................................... 	 social support and healthy aging ........................................................................................................ 	 social support in assisted living facilities .......................................................................................... 	 companion animals as providers of social support ......................................................................... 	 companion dogs and the social support theory .............................................................................. 	 companion dogs’ impact on social support ..................................................................................... 	 barriers to dog ownership ................................................................................................................. 	 visiting dog programs and senior outcomes .................................................................................... 	 group and individual comparisons .................................................................................................... 	 naturalistic interventions versus artificial research conditions ................................................... 	 research questions ..................................................................................................................... 	 hypotheses .................................................................................................................................... 	 chapter : methodology ............................................................................................................. 	 design ..................................................................................................................................................... 	 sample .................................................................................................................................................... 	 research phases ..................................................................................................................................... 	 phase one: facility recruitment. ....................................................................................................... 	 phase two: participant recruitment. ............................................................................................... 	 phase three: intervention. ................................................................................................................ 	 individual condition. ..................................................................................................................... 	 group condition. ............................................................................................................................ 	 phase four: follow-up. ....................................................................................................................... 	 measures ................................................................................................................................................ 	 analyses .................................................................................................................................................. 	 chapter : results ....................................................................................................................... 	 sample descriptions .............................................................................................................................. 	 facility descriptions ......................................................................................................................... 	 participant descriptions ................................................................................................................... 	 group condition ............................................................................................................................ 	 individual condition ..................................................................................................................... 	 intervention descriptions ..................................................................................................................... 	 interviews and field notes ................................................................................................................... 	 group condition. ............................................................................................................................... 	 	 	 vi	 personification. .............................................................................................................................. 	 bereavement. .................................................................................................................................. 	 pet void .......................................................................................................................................... 	 emotional support ......................................................................................................................... 	 individual condition. ......................................................................................................................... 	 reminiscence ..................................................................................................................................... 	 focus groups ......................................................................................................................................... 	 mixed measures anova ..................................................................................................................... 	 chapter : discussion .................................................................................................................. 	 hypothesis ........................................................................................................................................... 	 hypotheses and ................................................................................................................................ 	 reminiscence .......................................................................................................................................... 	 real world intervention ....................................................................................................................... 	 conclusion .................................................................................................................................... 	 limitations ............................................................................................................................................. 	 contributions ......................................................................................................................................... 	 future directions ................................................................................................................................... 	 references .................................................................................................................................... 	 appendices ................................................................................................................................... 	 appendix a: conceptual model of social support’s multilevel impact on health (berkman et al., ) ........................................................................................................................................................ 	 appendix b: facility director introduction letter ........................................................................... 	 appendix c: advertising poster .......................................................................................................... 	 appendix d: individual condition consent form ............................................................................ 	 appendix e: group condition consent form ................................................................................... 	 appendix f: demographic questionnaire ........................................................................................ 	 appendix g: multidimensional scale of perceived social support ............................................... 	 appendix h: semi-structured interview questions ........................................................................ 	 appendix i: guest consent form ...................................................................................................... 	 appendix j: focus group consent form ......................................................................................... 	 	 	 vii	 list of tables table . descriptive counts and means for group and individual condition participants. .......... 	 table . similarities and difference between intervention conditions ........................................ 	 	 	 viii	 list of figures figure . the proposed impact of dogs on perceived social support under the social support theory ..................................................................................................................................... 	 figure . . timeline of facility and participant recruitment. ....................................................... 	 figure . interactions between participants, handler, and dog in the group condition .............. 	 	 	 ix	 glossary 	 animal assisted therapy (aat): using an animal, usually a dog, to achieve therapy goals, for example, improving motor skills by throwing a ball for a dog or by brushing a dog. animal assisted activities (aaa): another term for visiting dog programs, interactions with patients, participants, or residents without explicit therapeutic or programmatic objectives. anthropomorphic thinking: assigning human-like mental states in animals and other nonhuman agents. assisted living facility: senior home which allows for independence while providing support through meals, laundry, housekeeping, and optional additional services. companion animal support: interactions with companion animals serve to supplement and substitute human social support. direct effect: when human social support is not sufficient or is difficult to obtain, companion animals may offer support in a number of ways: they may “top up” existing support, fill in for a deficiency of support, act as a cushion for fluctuating support. dog companionship: an attachment relationship with a dog, which can include ownership but ownership does not always result in companionship. dog handler: usually the owner of the visiting dog who is responsible for the safety of participants, clients, residents, and the dog. dog ownership: the presence of a dog within one’s household. indirect effect: the companion animal acting as a social catalyst, where the presence of pets initiates social interaction and facilitates the creation of new social networks naturalistic intervention: an intervention research study that approximates what would take place in a real world application of the intervention. 	 	 x	 placeholder: the role of the handler in the group condition, filling in for conversation when the visitation dog was occupied with another group member. recreation coordinator: an assisted living facility employee responsible for arranging and promoting all recreation for seniors with the facility. reminiscence: the sharing of experiences or memories in response to stimulus. a psychological technique often used in senior populations. senior: an individual who is years of age or older. social support: the meaningful function provided by social relationships visiting dog programs: interactions with patients, participants, or residents without explicit therapeutic or programmatic objectives. 	 	 xi	 acknowledgements i am forever grateful for the support i received from the faculty and staff at ubc o. this document would not exist without the patience, support, and critique of dr. reid. i thank my committee members, whose comments expanded my understanding and challenged my assumptions. special thanks to my family and friends who have supported me throughout my years of education, morally and financially. 	 	 	 chapter : introduction this study aims to address a gap in the literature on the use of visiting dog programs as a means of promoting social support among seniors in assisted living facilities. this research area is important because social isolation and depression, which are products of poor social ties, are common in assisted living facilities and among the broader senior population (krause-parello, ). it is important to explore new interventions to expand the arsenal of health promotion options for a rapidly aging population. one such intervention option is the use of visiting dog programs in senior facilities. to date, however, little research has been conducted in this area. existing research on visiting dog programs and seniors’ health outcomes, while having laid an important foundation for further research, must be expanded before robust statements can be made on the merits of visiting dog programs in senior populations. studies on visiting dog programs in senior populations lack consistent methodologies, significant results, and naturalistic applicability (banks & banks, ; banks & banks, ; banks, willoughby, & banks, ; bernstein, friedmann, & malaspina, ; berry et al., ; filan & llewellyn-jones, ; nordgren & engström, ). to address the inconsistencies and limited applicability of previous research, this study focuses on the experience of visiting dog programs and relationships among participants to develop an in-depth understanding of this intervention. by developing this deeper understanding of the experience of a visiting dog program and linking this experience to outcomes, this research project forms a solid foundation upon which to build further research. social support is an important determinant of seniors’ health (gilmore, ). seniors who report greater social support have lower scores on measures of loneliness and depression, as well as higher scores on measures of life satisfaction and overall physical health status (brown & 	 	 	 rhodes, ; epping, ; kahn, hessling, & russell, ; rhodes, murray, temple, tuokko, & higgins, ). social support is also related to health promoting behaviours, such as increased physical activity and good food choices, in seniors (riffle, yoho, & sams, ). while social support is an important component of successful aging, seniors in assisted living facilities are at elevated risk of social isolation (howie, troutman-jordan, & newman, ). transitions out of private residences into institutions such as assisted living facilities put seniors at increased risk for social isolation and poor social support because of potential separation from friends and family (howie et al., ). interventions aimed at promoting social support in can target seniors’ vulnerabilities and potentially contribute to successful aging and overall well- being. a promising new approach for promoting seniors’ social support is the use of companion animals. the literature highlights the use of companion dogs to lessen depressive symptoms, decrease loneliness, increase social engagement, and to promote seniors’ social support systems (banks et al., ; crowley-robinson, fenwick, & blackshaw, ; filan & llewellyn-jones, ; krause-parello, ; mcnicholas & collis, ). the use of companion animals is an increasingly popular approach to fostering health promotion. with the benefits of dog companionship encompassing physical, social, and mental health, the potential benefits of companion animals cover the entire continuum of care. researchers have shown dog ownership to be a viable option for promoting health by increasing social support (cutt, giles-cortia, knuimana, & burkeb, ; friedmann & son, ; o'haire, ), as well as increasing overall well-being and self-rated health (cutt et al., ; friedmann & son, ; giaquinto & valentini, ) and providing motivation for physical activity (brown & rhodes, ; epping, ; gretebeck et al., ; rhodes et al., ). 	 	 	 the literature on human and animal companionship is dominated by the study of dog ownership, rather than of companionship. this distinction between ownership and companionship is important because researchers have shown that the benefits derived from animals are related to our attachment and companionship rather than ownership status per se (crawford, worsham, & swinehart, ). companionship studies are more reflective of reality than ownership studies because they are not mutually exclusive. often, companionship is in conjunction with ownership, but not necessarily, and companionship without ownership is also possible, as in visitation programs. when research is focused on dog companionship (the relationship between humans and dogs) rather than ownership, we can translate that knowledge into visitation settings and the therapeutic role of dogs. however, dog visitation research is distinct from the study of dog ownership because the effects of dog handlers must also be taken into consideration (chur-hansen, stern, & winefield, ). dog visitation research, to date, has focused on separating the dog and the handler to isolate the dog’s influence from the handler’s influence on measured outcomes (e.g., loneliness) (brodie, biley, & shewring, ; chur-hansen et al., ). in practice, however, dogs and handlers are never separate. it is thus important to consider the joint effects of the dog-handler team, even if the emphasis is on the dog’s impact. visiting dog programs have shown significant impacts on participants in a number of health outcomes related to social support. banks and banks ( ) found participants in the visiting dog group were less lonely compared to a control group. similarly, hall and malpus ( ) found that after a twenty-week visiting dog intervention, participants’ number of social interactions significantly increased. seniors benefit from programs that promote social support and the development of social relationships, in overall well-being, life satisfaction, and social engagement (winningham & 	 	 	 pike, ). despite this, visiting dog programs have been underutilized and under researched as an intervention option for promoting social support in assisted living facilities. this study investigated the impact of visiting dog programs on seniors’ social support using novel methods. these novel methods addressed the joint role of dogs and their handlers in promoting seniors’ social support previously missing in the literature. the purpose of incorporating the handler was to understand the practical application of dog visitation programs to health promotion of seniors in assisted living settings. this study examined the experience of a six-week visiting dog program and its impact on social support among seniors in two assisted living facilities located in the north okanagan valley, british columbia, canada. each assisted living facility was assigned to either a group or individual condition to compare social support outcomes between and within each condition. the intervention maintained a naturalistic approach to the design to facilitate applicability to existing visiting dog programs. the naturalistic approach featured participant led program content and the inclusion of the handler. within and between conditions were measured using a perceived social support scale, demographic questionnaire, semi-structured interviews, field notes, and focus groups. data were analyzed using mixed measures analysis of variance for quantitative data and interpretive description for qualitative data. major themes emerged, including: dogs’ role in emotional support, the use of reminiscence, and the challenges of recruiting socially isolated seniors. results suggest that visiting dog programs do positively impact seniors’ social support. nevertheless, more research is needed to expand our understanding of the complex interplay between social support outcomes and a visiting dog program to further the development and use of interventions. 	 	 	 literature review social support and healthy aging social support is an important component of successful aging; it has been shown to be protective against adverse outcomes among seniors living at home, in care facilities, and even in hospitals (gilmore, ; howie et al., ; muramatsu, yin, & hedeker, ). studies of seniors’ health have shown that social support is related to health outcomes and is associated with measures of well-being, such as increased social participation and decreased loneliness (chen & gao, ; cornwell & waite, ; gilmore, ; liu & rook, ). however, the concept “social support” can often be used as a catch-all for various positive social interactions, for example, network size, social participation, and social engagement. this section will define social support and establish its importance in healthy aging, as well as frame its use in the present study. in the conceptual model proposed by berkman, glass, brisette, & seeman ( ), the multilevel phenomenon of social support’s impact on health is broken into upstream factors and downstream factors (appendix a). upstream factors consist of macro level social-structural conditions, which include culture, socioeconomic factors, and politics, and mezzo level social networks, which include social network structures and characteristics (berkman et al., ). downstream factors consist of micro level psychosocial mechanisms, which include social support, engagement, and influence (berkman et al., ). berkman et al. ( ) proposed that upstream factors condition the nature of and opportunities for the downstream factors. for example, our culture and socioeconomic status dictates the characteristics of our social networks, which in turn condition the opportunities for social support and engagement (berkman et al., ). 	 	 	 the macro level social-structural conditions shape social behaviour through, but not exclusively, norms, values, inequality, racism, sexism, ageism, political culture, and social change (berkman et al., ). the macro level factors condition the extent, shape, and nature of the mezzo level social network structures, including their size, range, and density (berkman et al., ). in turn the mezzo level social network structures and characteristics provide opportunities for micro level social interactions (berkman et al., ). these downstream factors, social support, social interactions, and social engagement, mediate pathways, which influence health behaviours and health outcomes, such as loneliness and depression (berkman et al., ). focusing on the micro level dimensions of social support, this study adopts the definition of social support from cobb’s seminal paper on social support and health outcomes as the meaningful function provided by social relationships. cobb ( ) proposed four dimensions of social support: emotional, esteem, tangible, and informational. emotional support provides care and comfort, allowing an individual to believe he/she are cared for and loved (cobb, ). examples include a hug from a friend or loved one, listening and empathizing. esteem support builds confidence and self-worth, allowing an individual to believe they are held in esteem and valued (cobb, ). an example is expressions of confidence or encouragement. tangible support is the direct aid provided, allowing an individual to believe he/she are part of a network (cobb, ). examples include bringing soup to someone who is sick or driving someone to a doctor’s appointment. finally, informational support is the advice and information given to individuals within the network (cobb, ). in a widely cited paper by cohen and wills ( ), these four dimensions of social support were developed into two proposed mechanisms through which social support works to affect health and well-being. the first mechanism is articulated in the main effect hypothesis, 	 	 	 where the perceived quality or availability of social support acts to reduce the stress response to stressful events (cohen & wills, ). the second mechanism is articulated in the stress- buffering hypothesis, where the meaningful functions of social support (emotional, esteem, tangible, and informational) buffer stressful events and thus moderate health risks (cohen & wills, ). both mechanisms have been widely adopted by researchers to examine social support and health outcomes in seniors (kahn et al., ; muramatsu et al., ; wilkins, ). in a study of long-term outcomes of coronary artery surgery, researchers found positive outcomes supporting the main effect hypothesis in recovery for adults, including seniors (king, reis, porter, & norsen, ). the study followed adults ranging from to years (with a mean age of ) post coronary artery surgery to measure their recovery outcomes against perceived social support measures (king et al., ). the researchers measured the four dimensions of social support using a modified scale where higher scores represented higher levels of perceived social support (king et al., ). the study demonstrated that perceived social support was positively related to emotional well-being and inversely related to functional disruption and angina up to one year after the coronary artery surgery. the researchers concluded that perceived emotional support was more important than tangible or practical support, supporting the main effects hypothesis (king et al., ). similar to the findings of king et al. ( ) in support of the main effect hypothesis, a more recent study found that perceived social support enables seniors to cope with deficits, such as illness or disability, in several ways resulting in greater life satisfaction, overall well-being, and other health outcomes (hatfield, hirsch, & lyness, ). kahn, hessling, and russell ( ) measured perceived social support, loneliness, depression, physical activity, and life 	 	 	 satisfaction in seniors. their study found that seniors who reported greater perceived social support were less likely to report loneliness, depression, low levels of physical activity, and low life satisfaction (kahn et al., ). similarly, riffle, yoho, and sams ( ) found that perceived social support was positively related to health promoting behaviours in seniors (e.g., exercise and nutrition). hatfield et al. ( ) found that perceived social support buffered the relationship between disability and depressive symptoms. harvey & alexander ( ) examined the relationship between perceived social support and health behaviours of older women. the results of their study indicated that perceived social support of friends predicted engagement in physical activity throughout the aging process (harvey & alexander, ). another study found older suicidal adults also reported low perceived social support (harrison et al., ). along with these findings, studies have produced results that suggest that the well-documented effects of socioeconomic status, gender, and age on health outcomes may be mediated by perceived social support (berkman et al., ; stephens, alpass, towers, & stevenson, ). social support in assisted living facilities transitions from the home into institutions, such as assisted living facilities can be very detrimental to seniors’ health (aneshensel, pearlin, levy-storms, & schuler, ). individuals can face increased mortality, depression, and decreased quality of life following these transitions (aneshensel et al., ). senior residents in assisted living facilities face unique restrictions and challenges in their social lives (howie et al., ). moving into assisted living facilities constitutes a major life transition, which is often associated with a decline in physical health or the death of a spouse (howie et al., ). this transition puts seniors at risk for social isolation 	 	 	 and poor social support because moving to assisted living facilities can also separate seniors from friends and family (howie et al., ). there are many factors that impact life satisfaction among seniors residing in assisted living facilities. physical activity, psychological health, and social support have been highlighted as important as a few of these factors that influence life satisfaction among assisted living residents (resnick, galik, gruber-baldini, & zimmerman, ). resnick et al. ( ) examined these variables in relation to life satisfaction. their study surveyed assisted living residents who were years of age or over and without cognitive impairments (resnick et al., ). social support was found to be positively associated with life satisfaction among assisted living residents (resnick et al., ). life satisfaction was also positively associated with social support when physical activity encouragement was a component of their support system (resnick et al., ). in review: (a) social support is an essential determinant of health for seniors, (b) seniors who transition into assisted living facilities are at an increased risk of social isolation, and (c) seniors with strong social support are more likely to report greater life satisfaction. given this, it is not surprising that the study done by winningham and pike ( ) found that institutionalized seniors may benefit from participating in programs designed to increase the level of social support and the frequency of meaningful social interactions. it is important to note, however, that not all seniors are capable of participating in programs which may increase social support and engagement because of mobility restrictions, cognitive impairments, or social isolation (winningham & pike, ). further evidence of the benefits of social support in assisted living facilities was measured using the lubben social network scale (howie et al., ). the lubben social 	 	 	 network scale defines social support as the perception of family and friends presence for emotional support (howie et al., ). researchers had assisted living facility residents complete the lubben social support network scale and the successful aging inventory to examine the relationship between social support and successful aging (howie et al., ). the mean age of participants was years and the majority reported at least one chronic condition (howie et al., ). results showed a positive correlation between perceived social support and successful aging (howie et al., ), a finding consistent with existing research. the health benefits and other outcomes associated with the various measures of social support can also be observed when measuring the social support impacts of companion animals. while the majority of the social support research focuses on human social support, companion animals have been shown to play an important role in social support (chur-hansen, zambrano, & crawford, ; friedmann & son, ; hart, ; knight & edwards, ; mcnicholas, collis, & fine, ). companion animals may have a significant impact on social support as owners and individuals develop long lasting, meaningful relationships with pets (o'haire, ). companion animals as providers of social support animal companionship can be a powerful intervention for promoting social support in seniors. researchers have identified animal companionship as supplementing or substituting social support of family or friends (flynn, ; kurdek, ; paul et al., ; veevers, ). although companion animals cannot take the place of human social support when it comes to tangible and informational support, companion animals have been identified in a review of ownership studies as important providers of emotional support (flynn, ). this section will introduce the concept of animals as providers of social support, while acknowledging the difference between animal and human social support. 	 	 	 companion animals as important providers of social support have been analyzed through the lenses of anthropomorphic thinking (paul et al., ). companion animals are animals which humans form meaningful bonds with (paul et al., ). keeping animals as pets and companions necessarily involves varying degrees of anthropomorphism or “personification”: we name them, photograph them, talk to them, dress them, and mourn them (paul et al., ). paul et al. ( ) expanded on the concept of anthropomorphic thinking and identifying pets as providers of social support by measuring pet owners’ perceptions of social support provided by their pet. paul et al. ( ) measured perceptions of social support provided by the pet by listing different situations and asking how likely they would be to turn to their pet for support. situations included: ‘loneliness’, ‘a bad day’, ‘trouble with close relations’, ‘lacking confidence’, ‘sickness’, ‘depression’, ‘problems outside the home’, ‘nervousness’, and ‘bereavement’ (paul et al., ). they repeated this measure by asking how likely they would turn to friends or family for support in the same situations (paul et al., ). the study found that individuals who were unmarried or lived alone relied heavily on their pets for support (paul et al., ). researchers suggested that people who are more socially isolated tended to identify their pets as sources of social support more often than did those who are not socially isolated (paul et al., ). individuals who are not socially isolated still identify that pets are family members and sources of comfort, but identifying companion animals as a provider of social support is more likely among those who are deficient in human social support. in a study examining women who were victims of domestic violence, half the women reported that pets were a very important source of emotional support (flynn, ). similar to the conclusion drawn in the paul et al. ( ) study, the percentage of participants who reported pets as providing very important 	 	 	 emotional support was higher in women without children compared to women with children. this finding highlights that individual variation in the identification of companion animals as providers of social support can depend on the quality of human support. the same study also identified pets as emotional substitutes for family (flynn, ). paul et al. ( ) and flynn ( ) both confirmed veevers ( ) conclusion that: “since interaction with companion animals can approximate human companionship, the presence of pets may serve to supplement the benefits usually derived from the roles of friend, parent, spouse, or child” (p. ). interactions with companion animals serve to supplement and substitute human social support (veevers, ). companion animals, as a source of social support for owners, have been refined into a theory specific to companion dogs, as discussed further in the following section. the theory outlines companion dogs’ role and impact on social support while linking their role and impact to outcomes in health. companion dogs and the social support theory the social support theory, as proposed by collis and mcnicholas ( ), emphasizes the capacity of dogs and other companion animals to ( ) reduce loneliness and increase well-being as a provider of social support and ( ) links the benefits derived from dog companionship to social support. the social support theory has been tested using multiple indicators of social support (e.g., loneliness, depression, perceived social support, and social interactions) as well as using multiple definitions of dog interactions (i.e., ownership, companionship, and visiting dogs). the theory proposes the dogs’ role in social support in two ways: directly (the emotional support provided by the dog for the human); and indirectly (the dog acting as a social catalyst). the direct social support effect refers to the companion animal acting in the role of or as the agent of social support (figure . ). when human social support is insufficient or is difficult to 	 	 	 obtain, companion animals may offer support in a number of ways: they may “top up” existing support, fill in for a deficiency of support, act as a cushion for fluctuating support, and create a space free from judgment and awkwardness (mcnicholas et al., ). pet ownership was related to feelings of control and normalcy when dealing with breast cancer treatment and diagnosis, and it was found that pets provided invaluable support (mcnicholas et al., ). in a longitudinal study of spousal bereavement, dog owners reported the most support from their pets and that support was independent of human social support (mcnicholas et al., ). in a visiting dog walking program, participants reported feeling better because of the dogs; they also reported the dogs gave them a reason to get up in the morning (r. a. johnson & meadows, ). this study used a handler for the dogs to accompany participants, however the handler had limited interaction with participants and did not detract from the primary impact of the dogs (r. a. johnson & meadows, ). the social support theory has not been used to test the combined influence of dog and handler, however because of the breadth of this theory’s use in current literature on companion dogs, it will be extended in the present study to the combined effect of dog and handler, particularly because humans provide support similar to dogs. figure . the proposed impact of dogs on perceived social support under the social support theory 	 	 	 the indirect effect refers to the companion animal acting as a social catalyst (figure . ), where the presence of pets initiates social interaction and facilitates the creation of new social networks (mcnicholas et al., ). more social interactions take place when a person is with a dog when compared to situations without a dog, even in locations not normally associated with dog walking (e.g., public transit instead of a park) (mcnicholas & collis, ). interactions between strangers and acquaintances were increased (mcnicholas & collis, ). not only did mcnicholas & collis ( ) find that number of interactions increased in the presence of the dog, but they also found heightened interactions continued with acquaintances after the dog was no longer accompanying the individual. this demonstrates the social facilitation and network building capacity of using companion animals. similarly, cutt and colleagues ( ) found that the presence of dogs may lead to an increase in social capital and networking among dog owners and non-owners. knight and edwards ( ) found that dogs acted as the mechanism to promote socialization between dog owners. participants stated that without their dog present they would not have the reason or initiative to create friendships with other dog owners. while some studies have focused on the direct or the indirect effects of dog companionship, most studies have not been designed to distinguish between them. the methodology of these studies (cross sectional surveys) do not allow for the interpretation of why pet owners reported outcomes such as reduced loneliness, reduced depressive symptoms, and improved moods, that is, whether the outcomes were from direct or indirect effects (krause- parello, ; odendaal, ; i. h. stanley, conwell, bowen, & van orden, ). stanley and colleagues ( ) found senior pet owners were % less likely to report loneliness than were non-owners. in a study of older women, krause-parello ( ) found negative relationships between pet attachment and social support, and the outcome variables, loneliness and depression. 	 	 	 researchers have also found that dog visitation programs reduce blood pressure and elevate the mood of patients (odendaal, ). there is mounting evidence supporting the social support theory, however, the current literature is limited by the focus on dog ownership rather than companionship. companionship studies have much wider applicability. they focus on the relationship with a dog rather than the continuous presence of a dog in the home. studies that examine the effects a relationship with a dog however, can be used in visiting and ownership studies. companion dogs’ impact on social support this section reviews the impact companion animals have on human health in animal ownership studies and in visitation studies. as the visitation literature is limited, this section will also illustrate how findings from studies focusing on dog owners can be applied to visitation settings. the research on the health benefits of companion animals has not expanded over the past two decades and many studies have produced inconsistent results (cherniack & cherniack, ). there are different fields of inquiry, which investigate these potential health benefits (for example, increased social support, increased physical activity, and psychological well-being), including dog ownership, dog companionship, animal assisted therapy (aat) , and dog visitation . these terms are defined as follows: dog ownership is very simply the presence of a dog within one’s household. dog companionship is an attachment relationship with a dog, which can include ownership. it should be noted that ownership does not always result in companionship. aat is using an animal, usually a dog, to achieve therapy goals, for example, 																																																								 other terms for aat used in the literature include: pet therapy, pet-facilitated therapy, and animal assisted intervention. another term for visiting dog programs is animal assisted activities (aaa)	 	 	 	 improving motor skills by throwing a ball for a dog or by brushing a dog. dog visitations differ from animal assisted therapy because they have no therapeutic intent or programmatic objectives. research on dog ownership, animal companionship, aat, and dog visitations inform one another because the streams of inquiry all examine health benefits that result from the relationship built between human and dog. although ownership studies predominate, a small but growing number of studies have focused on companion animal benefits deriving from attachment and companionship (crawford et al., ; peacock, chur-hansen, & winefield, ). studies examining ownership can nonetheless inform dog visitation research. companionship may occur with pet ownership, it may also exist without ownership (r. a. johnson, odendaal, & meadows, ). likewise, ownership does not always result in attachment or companionship with a pet (r. a. johnson et al., ). a study examining both ownership and companion animal attachment found similar results to studies focused solely on ownership (peacock et al., ). peacock et al. ( ) found strong pet attachment in owners was associated with decreased levels of depression, and it is reasonable to assume similar effects from pet companionship whether or not the pet is owned. studies have shown that dogs and other pets can often fulfil dimensions of social support commonly reserved for human social support (knight & edwards, ; mcnicholas et al., ; peacock et al., ). in a study on breast cancer recovery and diagnosis, the majority of participants reported their pet fulfilled at least one important dimension of social support, most commonly emotional support (mcnicholas et al., ). pets were also shown to be an important form of social support and companionship when recovering from spousal death (mcnicholas et al., ). results from a united kingdom focus group identified dogs as important members of owners’ families, providers of comfort, and important in contributing to owners quality of life 	 	 	 (knight & edwards, ). dog ownership has also been associated with a reduction in psychological distress (peacock et al., ). a study looking at companion animal attachment and mental health implications found companion animal attachment was significantly related to increased psychological well-being (peacock et al., ). this study also found that there was no association between living with the companion animal and well-being (peacock et al., ), adding further evidence to the argument that the relationship with the dog or companion animal is more important than mere ownership. the impact of companion animals on social support is most important and influential in vulnerable populations, such as seniors (peacock et al., ). as seniors in assisted living facilities are more vulnerable to social isolation and, as the positive impact of companion dogs is most influential on vulnerable seniors, it is logical to suggest using companion dogs to promote social support in seniors. not only have dogs been identified as a direct source of social support for their owners (cutt et al., ), dogs have also been well documented as facilitators of social interactions (mcnicholas & collis, ). dog owners are significantly less likely than non-owners to report difficulty getting to know people (wood, giles-corti, & bulsara, ). mcnicholas and collis ( ) described the robust catalyst effect of dogs in areas not traditional to dog walking. most dog walking is associated with areas around parks and neighbourhoods, however, this study found catalytic effects in areas such as universities and public transit. even when the dog was trained not to solicit attention, researchers found more social interactions occurred with strangers and acquaintances if walking with a dog than if walking alone (mcnicholas & collis, ). furthermore, knight & edwards ( ) concluded that dog ownership provided owners with a sense of “group membership” from meeting and socializing with other dog walkers 	 	 	 the impact companion dogs have on social support is most often measured as a secondary component to their influence on physical activity and their use in therapy. the use of dogs in promoting physical activity and in therapy is successful, in part, because of the support provided by the dogs. in a review of dog ownership and physical activity, dog owners were found to be consistently more physically active, a result which many researchers attribute to dog walking (cutt et al., ). dog walking has been identified as a feasible motivator to increase physical activity across socio-economic statuses and ages (epping, ; rhodes et al., ). a scoping review identified the potential of dog walking to increase owners’ physical activity but also to increase neighbourhood physical activity and social cohesion (the catalyst effect of companion dogs) (toohey & rock, ). studies have also shown dogs provide a level of social support as an exercise companion that contributes to increased physical activity (cutt et al., ). the primary motivator for dog walking is the obligation felt towards maintaining the health and well-being of one’s dog (brown & rhodes, ; gretebeck et al., ). dog walking has the potential to benefit not only dog walkers, but dogs as well (degeling, burton, & mccormack, ). not only have dogs provided social support and exercise motivation to their owners and companions, these effects have likewise been utilized in aat to produce desired outcomes. aat come in many forms and encompass many different therapeutic intents or specific outcome goals for participants, for example physical activity or motor control. the therapeutic intents for aat include reduction of depression (berry et al., ), reduction of loneliness (banks & banks, ), alleviation of dementia symptoms (filan & llewellyn-jones, ), and increase in physical activity (r. a. johnson & meadows, ). additionally, it can even be used in family therapy (walsh, ). the most common therapeutic intents aim at mitigating 	 	 	 adverse health events that have been associated with social support (e.g., depression and loneliness). the most common settings for aat include psychiatric facilities (hall & malpus, ), long-term care facilities (banks & banks, ), hospitals (kamioka et al., ), and in counselling sessions (pichot, ). aat is not limited to dogs. other animals used include cats, horses, birds (kamioka et al., ), and even robotic pets (banks et al., ). generally, when companion animals are used in aat there is a specific purpose or intent to their introduction (e.g., increasing physical activity) where the dogs are used as a tool to produce the desired outcomes (pichot, ). it is important to distinguish between dog visitation programs and aat. although they are similar in that they both utilize relationships with dogs, or other animals, which can produce positive outcomes in participants, the primary difference is that aat has specific goals. aat uses the animal as a tool to produce results in patients, participants, or residents (pichot, ). dog visitation programs, also known as animal assisted activities (aaa), involve interactions with patients, participants, or residents without explicit therapeutic or programmatic objectives. there is evidence that the benefits seen across a range of health conditions and in various settings can also be seen in populations exposed to dogs where there is no therapeutic intent. for example, the only long-term study of visiting and resident dogs in nursing homes took place from november to september and found decreases in depression, anger, and confusion scores when compared to a control group (crowley-robinson et al., ). as discussed previously, the benefits seen from dogs and other companion animals with and without therapeutic intent have been linked to the social support impacts from companion animals. 	 	 	 barriers to dog ownership despite all the evidence regarding the social support benefits of dog ownership, a weakness in the methodology used to date, is the focus on ownership rather than companionship (peacock et al., ). in fact, researchers have shown that the benefits derived from companion animals are related to attachment rather than ownership status (crawford et al., ). the focus on ownership rather than companionship also limits the transferability to non-owner circumstances. however, as discussed previously, the results from studies on ownership can still inform future research on the influence dogs have in a visitation setting, because studies focusing on companionship, ownership, and visitations report similar results and health outcomes. despite the benefits, pet ownership is not always a feasible or desirable option later in life (anderson, lord, hill, & mccune, ; chur-hansen, winefield, & beckwith, ). thus, seniors are often excluded from the potential benefits associated with companion animal relationships. reasons given by former pet owners for not owning pets fall generally into practical or emotional reasons (anderson et al., ; chur-hansen et al., ). practical reasons included: fear of what would happen to the pet should the individual die, constraints of pet care, living constraints such as a retirement home, assisted living, limited living space, fees associated with pet deposits and veterinary care, and, finally, the burden of caring for a pet (anderson et al., ; chur-hansen et al., ). emotional reasons given for not owning a pet included avoiding the grieving process (both for the pet and individual) and not wanting “another child” (chur-hansen et al., ). because of limitations to ownership, dog programs have been developed to address the needs of populations such as seniors; “such [programs] might allow the individual to enjoy time with a companion animal without the associated burden of the responsibility of care and associated financial, emotional and physical costs” (chur-hansen et al., 	 	 	 p. ). these programs attempt to provide the benefits of ownership without the responsibility, as well as the benefits of aat without the therapeutic intent. visiting dog programs and senior outcomes for individuals not able or willing to undertake dog ownership, options are available to experience the benefits of dog companionship in the form of visiting dog programs. the literature on visiting programs is very limited, however, studies have found a positive influence of visiting dog programs in a range of senior populations from community living seniors to long- term care residents (banks & banks, ; banks & banks, ; banks et al., ; berry et al., ; hall & malpus, ). hall and malpus ( ) investigated the use of a visiting dog program in long-stay psychiatry to promote social interaction over a twenty-week period. their research participants were all male, over years of age, and had been in institutionalized care for over years (hall & malpus, ). over the course of the visiting dog sessions, the observed number of social interactions of participants increased notably (hall & malpus, ). although this is a unique population of seniors, the study produced two results that can be applied towards future research. firstly, the study findings suggested the visiting dog and not the dog handler provided the positive changes in the participants (hall & malpus, ). secondly, the study found anecdotal evidence that the staff in the facility were using the visiting dogs to facilitate their client’s engagement (hall & malpus, ). these findings support the social support theory that dogs positively influence social interactions and act as social facilitators (mcnicholas et al., ). banks and banks ( ) investigated the effects of visiting dogs on loneliness in nursing homes, testing for different dosages (no visitations, one visit per week, and three visits per week) 	 	 	 of the visiting dogs. this study used a convenience sample of lonely seniors recruited from three long-term care facilities in missouri, united states. the study found participants in the treatment groups were less lonely compared to participants in the control group (banks & banks, ). similar to the hall and malpus ( ) study, banks and banks ( ) controlled for dog handler influence by restricting handler contact with participants to a standardized script read to participants at the beginning of each session. notably, this study found that even a one half hour session once a week for six weeks was enough to show a statistically significant reduction in loneliness (banks & banks, ). berry et al. ( ) also investigated the social impacts of visiting dogs in a nursing home, although they followed an aat design with structured therapy sessions. they found an increase in participants’ willingness to participate with the dogs, as well as a reduction in depressive symptoms, when compared with when the intervention began (berry et al., ). evidence of dogs’ ability to promote social support is significant for seniors’ living arrangements; a recent study concluded that interventions that establish meaningful relationships and enhance social support could assist individuals in adjusting to new residential circumstances (howie et al., ). bernstein, friedmann, and malaspina ( ) compared a visiting dog program to a control condition in long-term residents over a ten-week period measuring social behaviours. volunteers from a local humane shelter would bring in puppies, kittens, and the occasional older dog, for visits with the residents (bernstein et al., ). in the control group, puppy visits were replaced with craft time and snack bingo (bernstein et al., ). the researchers concluded that the visiting dog program provided more of an opportunity for residents to engage in and initiate conversation with other residents and staff, compared to residents exposed to the control 	 	 	 condition (bernstein et al., ). these findings also support the social support theory that dogs positively influence social interactions and act as social facilitators (mcnicholas et al., ). a study investigating a six-month visiting dog program and perception of loneliness in nursing home residents found significant differences before and after the intervention (vrbanac et al., ). this intervention ran -minute sessions three times weekly for six months (vrbanac et al., ). residents were not forced to interact with dogs, but were encouraged to pet, play, walk, and talk with the dogs (vrbanac et al., ). all participants expressed joy while visiting with the dogs, and previously solitary residents began meeting, before and after the sessions, and reminiscing about pets previously owned (vrbanac et al., ), in line with the anticipated indirect effects of interactions with dogs (mcnicholas et al., ). in a study investigating the effects of dog visits on depression, mood, and social interaction in nursing homes, researchers found no significant results (phelps, miltenberger, jens, & wadeson, ). despite the absence of significant results in their study sample, the researchers found that all the participants wished to continue receiving visits from the dogs (phelps et al., ). dog visits consisted of the participant holding the dog’s leash for five to ten minutes while the handler stood behind them (phelps et al., ). this was repeated once a week for six weeks (phelps et al., ). similar to the results and conclusions of the phelps et al. ( ) study, friedmann. galik, thomas, hall, chung, and mccune ( ) evaluated the impact of a visiting dog program on functional status in assisted living residents with mild to moderate dementia (friedmann et al., ). residents were assigned to either a control group (reminiscence therapy which consisted of encouraging conversation by sharing stories and photos), or to an experimental group, which engaged residents in dog-related activities with a welsh corgi (friedmann et al., ). 	 	 	 following the -week intervention the researchers concluded that all trajectories of change from pre-post intervention were in the direction of improvement, although no significant changes were observed in either group (friedmann et al., ). group and individual comparisons naturalistic visiting dog programs always take the form of either group or individual visits (pet partners, ; st. john ambulance, ). group visits consist of the handler-dog team visiting a group of people in a single location. individual visits consist of the handler-dog team visiting with one person at a time. banks and banks ( ) is the only study, to date, that has looked at group versus individual visitations in long-term care facilities, or any other facilities. by measuring individual and group visitations they were able to investigate dog visitation programs approximating a natural environment. as well, using a comparative methodology also allowed the researchers to test, indirectly, the social support theory. banks and banks ( ) investigated dog visitation programs in three long-term care facilities, and evaluated the impact that these programs have on loneliness. they recruited thirty- three individuals and randomly assigned them to the individual condition or the group condition for visitations. both conditions were administered the dog visitation program for thirty minutes once a week for six-weeks. while the participants were allowed to interact with the dog in a self- prescribed manner, the interactions with the handler remained artificial, in that participants were read a script informing them to avoid contact with the handler throughout the visitation settings. the individual dog visitations were used as a measure of the direct effect and the group visitations were used as a combination measure of the direct and indirect effect of dogs on social support. 	 	 	 participants in the individual visitation sessions showed a significant decrease in loneliness, however the participants in the group visitation session did not (banks & banks, ). the researchers concluded from these results that dog visitations did not facilitate human interactions in long-term care facilities. in other words, the indirect effects of the dogs were unobserved, but the direct effects of dogs were observed. banks and banks ( ) surmised that hearing impairment, incompatibility in the groups, and bias from previous relationships with participants influenced these results. the results from this study elucidate the need for more in- depth description of the differences and similarities in individual and group visitations. using a methodology that replicates practical visitation environments and that aims to gather descriptive data testing the social support theory will allow for more meaningful results. naturalistic interventions versus artificial research conditions previous studies’ (described earlier) research designs predominantly isolate dog effects from handler effects (banks & banks, ; chur-hansen et al., ). however, these studies do not reflect the naturalistic application of visiting dog programs. what they have shown is that the effects of dogs on health outcomes occur independently of the effects of the handler (banks & banks, ; hall & malpus, ; r. a. johnson & meadows, ; phelps et al., ). these studies demonstrated these effects by isolating the dog from the handler and controlling handler interactions (banks & banks, ; hall & malpus, ; r. a. johnson & meadows, ; phelps et al., ). phelps et al. ( ) had the dog handlers follow a script with participants, hand off the dog leash, and then leave or stand behind the participant to ensure no interaction. banks and banks ( ) had dog handlers in control of the dog leash at all times, but they were not to engage with participants or dogs. 	 	 	 although these studies have isolated dog effects from handler effects, they do not reflect the practical application of dog visitation programs. handlers are an important component of dog visitation programs and in practice handlers are never more than a leash length away from their dogs for the safety of residents and the dog (pet partners, ; st. john ambulance, ). current studies investigating the impact of visiting dogs on human health have designed their methodology around separating dog from handler, resulting in artificial environments that cannot be translated into naturalistic interventions (banks & banks, ; hall & malpus, ; r. a. johnson & meadows, ; phelps et al., ). few studies have been able to separate direct and indirect effects to fully test the social support theory. this study will replicate naturalistic interventions that test the social support theory, allowing for natural handler interaction with the dog and participants, and for comparing individual and group visitation conditions. 	 	 	 research questions primary question: do visiting dog programs positively impact perceived social support and are there differences between individual and group conditions? subsidiary question: are those differences attributable to direct or indirect effects of dog visiting programs? hypotheses ( ) both individual and group dog visitation conditions will have a positive impact on participants’ perceived social support, both directly and indirectly. ( ) the primary effect on participants in the individual visiting dog condition will be the direct effect (dog-human interaction). ( ) the primary effect on participants in the group visiting dog condition will be the indirect effect (facilitating human-human interaction). 	 	 	 chapter : methodology design this is an exploratory quasi-experimental comparative intervention study using mixed methods. the interventions involved participants’ exposure to a dog and handler to measure the influence on participants’ perceived social support. two conditions were compared to explore similarities and differences in effects of two different visiting dog program designs. this study compared a visiting dog program that visits individuals (condition ) to a visiting dog program that visits with a group (condition ). the intervention design reflects naturalistic visiting dog programs (pet partners, ; st. john ambulance, ). the st. john ambulance therapy dog program matches handlers and dogs with individuals or groups within the community. generally, groups or facilities will request therapy dogs and the volunteer coordinator will match dog-handler teams with them. groups and facilities include, but are not limited to, nursing homes, assisted living facilities, retirement communities, hospitals, hospices, halfway homes, homeless shelters, group homes, and schools. visits with the handler-dog team are arranged as either a group visit in a communal location or as a one-on-one visit with an individual. group visits generally comprise individuals congregating in a communal location in any given facility at a pre-arranged time where the team meets and visits with the group as a whole. the individual visits are geared towards individual preferences, and can vary from sitting to going for walks with the team. perceived social support measurements were administered three times: ) before the intervention was administered to both conditions (baseline); ) after the intervention was administered to both conditions (post); and ) six weeks after the intervention was administered to measure short-term impacts (follow-up). demographic measurements were taken at baseline, 	 	 	 including; age, gender, and education. the experience of individuals and dogs in visitation settings is subjective and contextual. for that reason, there was not a prescribed plan for the participants to follow with the dogs. this approach is unique in the published literature and captures in-depth the influence of the visiting dog program, while maintaining a close approximation of actual visiting dog programs. sample participants were recruited from assisted living communities in the north okanagan valley, bc, canada. the target sample was fifteen participants (approximately half men and half women) with ten participants for the individual condition and five participants for the group condition. this target was recruited from two sites, one for each condition. in keeping with the research design, the first site to respond to the research invitation was assigned to the individual condition and the second to the group condition. this target sample was selected to approximate previous studies while working within the confines of limited resources. during the planning phases of the study, it seemed feasible to recruit all ten participants in the individual condition from one site, however this proved to be impractical (discussed further in chapter ). the research sites were recruited by approaching eligible facilities and presenting the research proposal to each facility’s director. an email or letter (appendix b) was sent to the facility directors introducing the study and inviting them to participate. contact information for the facilities was taken from the facility’s website. this email or letter was followed-up by a phone call by the researcher. a meeting was then arranged with the facility’s recreation coordinator to discuss the study, what would be needed from the facility, and to respond to questions. 	 	 	 eligible research sites were assisted living facilities restricted to seniors. assisted living facilities provide assistance for daily living (e.g., providing meals, laundry, or bathing) but do not provide total care. the facilities provide residents with a private room and bathroom, with the option of a small kitchen, leisure and recreation programs, meals served in common dining area, -hour onsite staff, and medical reminders. facilities’ leisure and recreation programs include, but are not limited to, happy hour, fitness programs, organized games, movie nights, and lunch outings. residents are assigned seating in the common dining area for lunches and dinners with the same people at each table. on-site staff includes security, nursing staff, directors and coordinators, as well as receptionists. the exclusion criterion for research sites was the presence of a resident dog, as they have been shown to have beneficial outcomes in seniors and presumably would contaminate the results (crowley-robinson et al., ). the inclusion criteria for participation were as follows: ( ) participants needed to be years of age or older and ( ) independently mobile (with or without the use of mobility aids). the age criterion of or older was chosen because of academic standards, which define seniors as those individuals or older. the participants needed to be independently mobile to allow for natural interactions with the visiting dog/handler team, unrestricted by mobility issues. exclusion criteria for participation were: ( ) fear of dogs; ( ) severe allergy to dogs; ( ) already being visited by another animal (either through friends, family, or volunteer organizations); ( ) participation in social activities four or more times a week; ( ) being visited by friends and/or family four or more times per week. potential subjects with fear of and allergies to dogs were excluded from participation for health and safety reasons. those who were already visited by a dog were excluded from the study to avoid confounding results related to the other visiting dog. seniors who participated in 	 	 	 frequent social activities were excluded from recruitment in order to target socially isolated seniors. social isolation was measured as ( ) the number of outings, programs, or events attended and as ( ) the number of visits from friends or family in a usual week. this approach to sampling captured data on seniors who were relatively mobile (able to walk with or without the use of mobility aids) and able to make decisions on their own, but who were in living situations that prohibited pet ownership. the purpose of these criteria was to select seniors who were unable to benefit from dog ownership, but who would be able to interact with the dog as if they owned the dog (i.e., allowing for visitation settings to mimic ownership behaviours). modelling ownership conditions enables the extension of dog ownership studies to dog visitation programs. inclusion/exclusion criteria were also intended to provide the study with individuals who were not relatively active socially,(i.e. those whom research shows can gain the most from companion animal interactions). individuals who are heavily involved in social activities and have strong social supports are less likely to benefit from dog visitation programs (banks & banks, ). as socially isolated seniors are more likely to benefit from visiting dog programs, the present study theorized that the effect size with this group would likely be larger than with socially active seniors. furthermore, the measures chosen would be more likely to detect changes in perceived social support. previous studies of visiting dog programs reported “positive trends” or results moving “in the direction of improvement”, but were unable to detect significant results (crowley-robinson et al., ; friedmann et al., ; mossello et al., ; nordgren & engstrom, ; nordgren & engström, ; phelps et al., ; zisselman, rovner, shmuely, & ferrie, ). although the lack of significant results could be a combination not only of effect size, but also 	 	 	 measures, population, and intervention design, it was important to select inclusion and exclusion criteria that would maximize the effect size of this study. the researcher owns the visitation dog (barry, a five-year-old golden retriever cross) and acted as handler for all visitation sessions. both handler and dog are certified by the therapy dog organization, st. john ambulance. certification involved a health and behavioural screening process. the dog was tested on temperament and reaction to stressful situations, loud noises, distractions, and other dogs. certification is also based on maintaining immunizations, health screenings, and frequent bathing/grooming procedures. the dog and the researcher had one year of experience facilitating dog visitations, at the time of data collection. the continuance of certification of the dog-handler team requires the visitation dog be kept clean and healthy, and that the dog’s immunizations are kept up to date, which st. john ambulance monitors. the same dog-handler team was used during all visitations to maintain consistency of the intervention’s execution and data collection. the same dog-handler team was also used to facilitate the development of familiarity and relationships between participants and visiting dog team. in visiting dog programs, the dog is generally owned by the handler (pet partners, ; st. john ambulance, ), although the handler is generally not the owner in previous research (banks & banks, ; banks & banks, ; banks et al., ; r. a. johnson & meadows, ). using a dog-handler team that is also a pet-owner relationship reflects actual visiting dog programs, which contributes to the naturalistic application of this study. utilizing one dog- handler team was also a constraint due to this study’s limited time and available financial resources. 	 	 	 research phases this study was carried out in four phases: ) facility recruitment, ) participant recruitment, ) intervention, and ) follow-up. facility recruitment consisted of the identification and enrolment of assisted living facilities into the study. facility director and institutional approvals were needed before potential participants could be identified and recruited into the study. participant recruitment was a collaborative effort between researcher and each facility’s recreation coordinators. recruitment included a presentation and targeted pitches to facility residents. the six-week intervention was broken into group and individual conditions in two different facilities. the follow up was a focus group held six weeks post intervention. its purpose was to gather the collective experiences and impressions of the intervention from participants. phase one: facility recruitment. five eligible assisted living facilities were identified through business listings in the north okanagan seniors housing guide . facilities that identified and/or advertised as assisted living in the guide were contacted to invite their participation. an email was sent out to facility directors (appendix b) explaining the project and potential benefits to their residences. if the email did not elicit a response within one week, the researcher followed up the email with a phone call to the residence’s director. following the email or phone call, a meeting was set up with the director or recreation coordinator to discuss the facility’s eligibility and willingness to participate, answer any questions the director or recreation coordinator might have, and discuss the participant recruitment strategy. five assisted living facilities were contacted by email to participate in the study (see figure . ); two facilities responded by email indicating interest. emails were sent out to all assisted living facilities with contact emails (five total facilities); two facilities responded to the email by contacting the researcher (facility a and b). both facilities were determined to be 	 	 	 eligible for participation through telephone discussion and email correspondence between the researcher and the facilities’ recreation directors. letters of support were received from both facilities, which constituted consent to participate. the first facility to respond to the call for participation (facility a) was selected for the individual condition and the second facility (facility b) was assigned to the group condition. no other facilities responded to the email, and no phone calls were made to other facilities, as the desired number of facilities was reached within one week. during participant recruitment for the individual condition (facility a), it was determined by the recreation coordinator that there was not enough interest in participation to continue recruitment. the remaining three assisted living facilities (facility c, d, and e) were then delivered a second hard copy of the email sent to facility directors. to maximize participant recruitment all facilities were contacted for follow-up and participation. two of the remaining facilities (facility c and d) responded and were deemed eligible for participation. meetings (both by phone and in person) were arranged with recreation coordinators to discuss further the project, facility eligibility, and participant recruitment. as the visiting dog program being categorized as ‘recreation’, the facility directors approved the study and passed communication and organization to the recreation coordinators, who become the main contact for the researcher. upon agreeing to have their facility participate in the study, letters of support, and operational approvals from interior health were received by both facilities (c and d). facility d dropped out due to lack of interest by facility residents and to population fragility. according to the recreation coordinator, many of the residents, were fragile following the recent loss of their own pets and did not want to participate. the recreation coordinator was unable to find any other residents interested in participation and suggested, with regret, that they withdraw from the study. 	 	 	 facility recruitment began in may (figure . ). operational approval was needed from each facility to obtain ethical approval. as soon as a letter of support and operational approval was submitted and received by the ethics department of both the university of bc and interior health, participant recruitment began concurrently with facility recruitment for other conditions. the letter of support and operational approval from facility a was received june and participant recruitment commenced the same month. the letter of support and operational approval from facility b was received july and participant recruitment commenced immediately following. facility a dropped out of the program august . data collection for facility b began august . phase two of facility recruitment began august . the letter of support and operational approval from facility c was received august and participant recruitment began the same month. data collection for facility c began september . the letter of support and operational approval from facility d was received september , however, they were forced withdraw from the program the same month. after facility d dropped out of the study, all assisted living facilities as listed in the north okanagan seniors housing guide had been contacted and participant recruitment and data collection had taken place for four months. 	 	 	 figure . . timeline of facility and participant recruitment. phase two: participant recruitment. participation recruitment took place within each of the selected facilities. a poster (appendix c) advertising a presentation on the research project was sent to each participating facility up to two weeks before the presentation took place. the presentation given to each facility provided a brief overview of the time requirements, potential benefits, and brief description of the project given by the researcher/handler with the visitation dog present. the presentation was advertised as a public event and all residents were invited. the recreation coordinator also advertised through word of mouth with residents who fit the eligibility criteria. data collection august facility b september facility c participant recruitment june facility a july facility b august facility c operational approval / letter of support june facility a july facility b august facility c september facility d facility response may facility a b august facility c d email / contact letter may facility a b c d e august facility c d e 	 	 	 this technique of participant recruitment has been successfully used in previous research (r. a. johnson & meadows, ). residents of the facility were invited to take an individual condition consent form (appendix d) or group condition consent form (appendix e). residents were reminded that the consent forms contained the contact information of the researcher, if they had any further questions, and were directed to the recreation coordinator if they wanted to sign up. copies of the consent forms were left with the recreation coordinators of the facilities for interested residents. the researcher participated in ongoing communication with the recreation coordinators throughout participant recruitment. recreation coordinators identified potential participants, their eligibility and outlined time commitments to the residents. recreation coordinators also provided consent forms for potential participants to review. the facility a presentation was attended by people; however, no residents signed up for the study following the presentation. consent forms were left at the facility. four people attended the facility b presentation. two people (a couple) were ineligible because their daughter brought her dog into to see them, one other person was ineligible because of cognitive impairment, and the fourth signed up for the study and was given a consent form to take home. following the presentation the recreation coordinator was given more consent forms, for other interested residents not at the presentation. through email correspondence with the recreation coordinator, it was established that three other residents were eligible and interested in participation. the recreation coordinator organized a time to meet with the four participants who had signed on and scheduled an initial visit. five people attended the facility c presentation. all the attendees were interested in participating and all were eligible. consent forms were distributed and initial visits were scheduled. during the initial visit, it was discovered that one of 	 	 	 the participants was younger than the year old cut off. she was given contact information for the st. john ambulance dog visitation program and thanked for her participation. other potential participants expressing interest in the study but who had not met the eligibility criteria were given the contact details for st. john ambulance. the researcher collected consent forms from eligible participants, who were then asked to complete the demographic questionnaire (appendix f) and the multidimensional perceived social support questionnaire (appendix g). eight individuals from facility b and c met the eligibility criteria and agreed to participate, four individuals from the group condition facility (one male, three females) and four individuals from the individual condition facility (one male and three females). the visitation schedule for the group condition was arranged by the recreation coordinator to fit the schedule of all participants. the initial visitation schedule for the individual condition was arranged after the recruitment presentation. the researcher suggested times and participants signed up for slots, two visits per day were scheduled two days per week. visitation schedules were consistently maintained week-to-week and participants were reminded at the end of each session when the next session would take place. phase three: intervention. the intervention consisted of up to one half hour per week visitations with the dog and handler over a six-session period. sessions were scheduled to last minutes but would end early if requested by the participant. this time period has shown significant results in research with similar sample sizes (banks & banks, ; banks & banks, ). for example, banks and banks ( ; ) conducted studies on dog visitations that lasted six weeks with half hour visits once a week, using samples with approximately participants; they found a significant reduction in participants’ loneliness when comparing pre and post scores. 	 	 	 during the intervention semi-structured interviews and ongoing participant observation were conducted by the handler at each of the -minute visitation sessions to collect in-depth data on the role of visiting dogs (appendix h). the semi-structured interview included questions such as: how do you feel today? what would you like to do with the dog today? and/or what do you enjoy about visiting with the dog? participants were encouraged to prescribe their own agenda with the dog, petting the dog, playing fetch, or walking for example. after the session participants were asked another set of semi-structured questions such as: how do you feel about your visit? and are you excited about the dog’s next visit? the handler digitally recorded the semi-structured interviews (with the participant’s consent) and recorded participant observations in a field diary following the sessions. during activities with the dog, the handler remained close to the dog to maintain control, participant safety, and dog safety. the handler’s role was to encourage interaction between participants and the dog while maintaining natural interactions with the participants. participants dictated the level of interaction with the handler. individual condition. the individual condition consisted of six visits, approximately once per week, during a set time in a prearranged location. locations were agreed between the participant and the handler so that both felt comfortable and safe (for example, a common area or outside). up to four sessions, with different participants, took place during one day of no more than minutes with a -minute break in-between each session so that the dog could rest. it was outlined to participants that sessions would be cancelled and rescheduled if the dog became fatigued or agitated. the initial dog visit acted as an orientation and meet-greet between the participant, the handler, and the dog. this initial visit, much like in naturalistic settings (st. john ambulance, ), allowed the participant and the dog to become comfortable with one another 	 	 	 and with the nature of the visitation sessions. the handler demonstrated possible activities that could be done with the dog (e.g., walking, brushing, playing, tricks, visiting) and encouraged interactions as if it were the participant’s own dog. suggestions were made for activities if the participants were not forthcoming. semi-structured questions were asked throughout the initial visit, as outlined earlier. during each subsequent visit the sessions began with pleasantries (e.g., how are you, how have you been) and continued with semi-structured questions as was appropriate. field notes were recorded following each session. as participants became more comfortable and familiar with the dog it was expected that the activities they chose would become more natural. subsequent visits with the participants began to take on a routine as the visits progressed. participants were given a letter explaining the consent process should they wish to have a guest join in on a session. guests would have been given a short version of the consent form to sign if they wish to participate (appendix i), however no participants chose to have a guest join them. in a naturalistic setting people would not be excluded from interacting with the visiting dog (st. john ambulance, ); to maintain naturalistic simulation we allowed for the option of guests within the study design. the final session with the dog followed the same procedure as the other sessions (i.e., brief semi- structured interview and field notes); however, participants were also asked to once again complete the multidimensional scale of perceived social support (appendix g) (zimet, dahlem, zimet, & farley, ). at the end of the sixth and last session, participants were thanked for their time and participation and were reminded about a follow-up focus group to take place approximately six weeks’ later. group condition. the group condition consisted of one group comprising of four participants (three female and one male). it involved once a week visits at a set time and in a 	 	 	 prearranged location, over a six week period. the location was in a public space within the assisted living facility, which is large enough to accommodate all participants and the dog handler team, but separated from the general population. it was established that sessions would be cancelled and rescheduled if the dog became fatigued or agitated. the initial dog visit served as an orientation and meet-greet between the participants and the dog (all participants knew each other prior to the intervention). this initial visit, much like in naturalistic settings (st. john ambulance, ), allowed the participants and the dog to become comfortable with each other and the nature of the visitation sessions. as described above regarding individual visits, the handler demonstrated possible activities that could be done with the dog (e.g. walking, playing, tricks, and visiting) and encouraged interactions as if it were participants’ own dog. suggestions were made for activities when the participants were not forthcoming. semi-structured questions were asked throughout the initial visit and field notes were recorded following each session. during each subsequent visit the sessions began with pleasantries (e.g., how are you, how have you been) and continued with semi-structured questions as appropriate. as participants became more comfortable and familiar with the dog it was expected that the activities they chose would become more natural. the group sessions were not rescheduled unless more than two individuals could not make the session. data collection during the final session with the dog followed the same procedure as the other sessions (i.e., semi-structured interview and field notes); in addition, participants were asked to complete the multidimensional scale of perceived social support (appendix g) (zimet et al., ). participants were then thanked for their time and participation and were reminded about a follow-up focus group in approximately six weeks’ time. 	 	 	 phase four: follow-up. following the intervention, a final meeting was arranged with the participants of each condition for the purpose of conducting a follow-up focus group. only one participant from the group condition did not participate in the focus group. the participant did not give the researcher a reason; she asked the recreation coordinator to inform the researcher that she did not wish to take part in the follow up. her wishes were respected and she was not contacted again. a meeting time was scheduled six weeks following the last visitation session, as determined by the majority of participants. the length of time between the intervention and the follow-up was selected to be the same length as the intervention, similar to the study by richeson ( ), which examined visiting dog interventions and dementia patient behaviour outcomes. very few studies on dog visiting programs in senior populations have conducted follow-ups, therefore no protocol on time periods has been set within the discipline. the purpose of the six-week follow-up was to further test the differences between the direct and indirect effect of dog visitations. the indirect effects of the dog visitation program (facilitation of social interaction with other individuals) could extend after the intervention is complete, however the direct effect of the dog visitation program (interactions between participant and dog) would not. by conducting phase four of the present study, the direct and indirect effects will be easier to distinguish and would allow for the identification of any short- term outcomes. there is an absence of studies examining short-term outcomes and identifying duration effects in the dog visitation literature (banks & banks, ; giaquinto & valentini, ; kamioka et al., ; morrison, ). participants in each condition participated in a separate focus group. the location was in a public space within the assisted living facility, which was large enough to accommodate all participants and the focus group moderator (the researcher/handler). each focus group session 	 	 	 was one-hour in duration. participants were reminded at the beginning of the session of their right to discontinue participation at any time without consequence and that the focus group would be digitally recorded. participants were asked to sign a reaffirmation of consent prior to the start of the focus group session. the focus group interview schedule included a brief introduction of the purpose and discussion guiding questions about the experience of the visiting dog program (appendix j). measures first, descriptive information was collected, including demographic information (appendix f). descriptive information included: age, length of time at the facility, marital status, number of children and grandchildren, previous occupation, and level of education. the questionnaire was kept brief; as most personal information was gathered throughout the intervention during casual conversation with participants, for example, pet ownership history. personal information was either documented through semi-structured interview transcripts or recorded in field notes. before and after the six-session intervention, participants were asked to complete the multidimensional scale of perceived social support. brief semi-structured interview questions were asked throughout each session and field notes were written following each session. the field notes were taken to capture non-verbal interactions between participants and the visiting dog. finally, follow-up focus groups were held six weeks post-intervention, where perceived social support was once again measured. semi-structured interview questions (appendix h) were developed because of their use in naturalistic visitation settings, such as st. john ambulance therapy dog program and pet partners (pet partners, ; st. john ambulance, ). existing visiting dog programs encourage handlers to ask about individuals’ day, what they want to do with the dog, what they 	 	 	 used to do with pets they might have owned, etc. the semi-structured interview questions were developed to replicate naturalistic settings (to remain conversational) while gathering data of interest concerning the individuals’ social status and the impact of the dog visits. questions of this kind have not previously been used in the literature; therefore questions have been standardized towards naturalistic handler and participant interactions. the questions were designed to target the direct and indirect impacts of the visiting dog program to address the research hypotheses. for example, “what do you enjoy about visiting with the dog?” addresses the direct hypothesis, and “do you feel more approachable when with the visiting dog?” addresses the indirect hypothesis. questions were also designed as conversational to avoid artificial interactions. field notes were recorded following each visitation session. field notes captured non- verbal interactions with the dog and handler team, such as activity choices (e.g., walking) or affectionate gestures (e.g., hugging). notes were taken on important or interesting topics brought up during the visitations, for example, their history of pet ownership. field notes also captured the indirect effects of the dog visiting sessions, for example recording participants’ interactions with others over the course of the intervention. field notes were also used for the development and review of semi-structured interview questions and focus group questions. perceived social support was selected as the construct of social support for this study. studies have indicated that subjective measures of social support (i.e., perceived social support) have greater influence on health outcomes in seniors, compared to objective measures of social support (antonucci & akiyama, ; cohen & hoberman, ; wallsten, tweed, blazer, & george, ; wethington & kessler, ). despite this evidence most of the literature on visiting dog interventions and seniors use objective measures of social support. for instance, 	 	 	 three studies measured social support as the observed number of spontaneous social interactions between the participants, dogs, and other residents (berry et al., ; hall & malpus, ; phelps et al., ). two of these studies also measured depression as an outcome of low social support (berry et al., ; phelps et al., ). three other studies measured loneliness (using the ucla loneliness scale) as a component of social support (banks & banks, ; banks & banks, ; banks et al., ). regardless of the preponderance of objective measures throughout the literature, the perception of social support remains the most appropriate measurement for this study. this measure coincides with our adopted definition of social support; the meaningful function provided by social relationships. essentially the micro level perceived social support used in this study is a small part of a very large overarching phenomenon, each part of which plays an essential role in health behaviours and outcome of individuals (berkman et al., ). however, focusing on perceived social support at the emotional level is most appropriate for studies of this kind with a small sample size, and exploratory descriptive design. because of the qualitative component of this study, perceived social support allows for interpretation within the context of newly built relationships. because of the design of the intervention, to facilitate the development of and promotion of support between participants and with the dog, using subjective measures of experience, perceived social support, allows for deeper interpretation and lays foundation for objective measurements in future studies. perceived social support was measured using the multidimensional scale of perceived social support (mspss) (appendix g) (zimet et al., ). it is a twelve item scale measuring perceived support received from friends, family, and significant others measured using a likert- type scale rating items from very strongly agree to very strongly disagree (zimet et al., ). 	 	 	 the mspss has previously shown good reliability (. ) and good internal consistency (zimet et al., ). perceived social support was negatively correlated to depression and anxiety showing good construct validity (zimet et al., ). internal consistency remained good when tested on seniors with health problems (oxman & berkman, ), and the reliability and internal validity remained strong in seniors with anxiety (m. a. stanley, beck, & zebb, ). the questionnaire takes approximately twenty minutes to complete. the final measurement used was the focus groups. focus groups were used rather than individual interviews to explore the collective experience of the visiting dog program (b. johnson & turner, ). the collective experience is the shared experience of participating in the visiting dog program for both conditions. although the individual condition involved a non- collective visit, participants still shared the experience. focus groups aid in individuals’ recollection and encourage participation of those who feel they have nothing more to contribute (b. johnson & turner, ). moreover, focus groups have been widely used to capture experiences in health services and have good interpretive validity (b. johnson & turner, ). analyses the first hypothesis, “( ) both visiting dog conditions will have a positive impact on participants’ perceived social support, both directly and indirectly”, was tested through the analysis of the semi-structured interview questions and substantiated by the mspss questionnaire and analysis of field notes. the semi-structured interviews, mspss questionnaire, and field notes all tested whether or not participants experienced a positive impact on their perceived social support. hypotheses and , “( ) the primary effect on participants in the individual visiting dog condition will be the direct effect (dog-human interaction), and ( ) the primary effect on participants in the group visiting dog condition will be the indirect effect 	 	 	 (facilitating human-human interaction)”, were tested through the comparison of the group and individual condition focus groups. the focus group data allowed for a direct comparison of the two conditions. the qualitative data (semi-structured interviews, field notes, and focus groups) were analyzed using interpretive description to search for emergent themes testing all three hypotheses. the purpose of interpretive description is to maximize smaller scale qualitative investigations to capture subjective perceptions arising in themes and patterns to generate a description that can inform understanding of a given phenomenon (thorne, reimer kirkham, & o'flynn-magee, ). interpretive description was developed for research within nursing to generate knowledge that could be applied in a clinical setting. the philosophical underpinnings of this method are aligned with the research objectives to examine the subjective nature of visiting dogs with seniors. the philosophical underpinnings state, “there are multiple constructed realities that can be studied only holistically. thus, reality is complex, contextual, constructed, and ultimately subjective” (thorne et al., , p. ). one of the benefits of interpretive description is the orientation of data analysis towards findings that will inform practice (hunt, ). this allows an exploratory study to move beyond description, and allows for the interpretation and identification of patterns in subjective experiences to inform programs, disciplinary thought, and future research. recorded interviews were transcribed and analyzed using hand coding by the researcher. transcriptions and field notes were reviewed prior to subsequent visits to inform further questioning. interviews were labeled by condition (i.e., individual or group) and by session number (i.e., , , , etc.). assigning these attributes allowed for easy comparisons across conditions and time periods. while transcribing visitation sessions, notes were taken on recurring 	 	 	 themes, interesting topics, and impressions of the data to aid in future coding. transcripts were then read through and coded into direct and indirect social support nodes. direct and indirect nodes were read through and coded for emergent themes. conditions and time periods were compared between the two nodes, to examine any changes in direct and indirect social support at all three time periods (addressing hypothesis ) and if there are any differences between direct and indirect social support in both conditions (addressing hypotheses and ). before analysis took place each session’s transcripts and field notes were read through and notes were taken on interactions, behaviours, or interesting statements. this was done to orient the researcher with the data prior to coding. analysis was done in five phases. phase one consisted of coding sections of interviews and field notes into direct interaction and indirect interaction with the dog. direct interaction was any contact or interaction that took place between a participant and the dog without handler or other participant involvement; for example, when a participant would pet, hug, or speak with the visiting dog. indirect interaction was any contact between participants and others (participants, staff, strangers) that took place because of the visiting dogs presence; for example, when participants would talk to each other about the visiting dog. quotes were copied into a microsoft excel file under each code heading. notes were taken during coding on the nature of interactions, and as these notes developed more codes associated with them, they were re-examined during phase two of coding. phase two of coding consisted of the development and coding of the reminiscence theme. the reminiscence theme captured the story sharing and reminiscence component of the visiting dog program. for example, sharing favourite memories of previous pet ownership. phase three of analysis consisted of compiling codes within each condition and developing subthemes, by looking for patterns and commonalities. subthemes developed included, personification, bereavement, pet void, and 	 	 	 emotional support. phase four of analysis was coding the focus group transcripts and field notes for indirect support and shared experience of the visiting dog program. the fifth and final phase of analysis was the interpretation of developed codes, the comparison between conditions, and the comparison of focus groups. rigor for the qualitative data was established during data collection and analysis. prior to data collection the researcher acknowledged the biases held about the benefits of visiting dog programs. acknowledging this bias was critical so that the handler did not project those biases on the participants during the data collection phase or during the data analysis phase. analysis and data collection was also done concurrently to allow for constant comparison of results and collection. constant comparison has been used with interpretive description to add to the rigor of analysis (thorne et al., ). quantitative data were used to test hypothesis . they were also used to test differences between the conditions over time; however only the qualitative data allow for interpretation of why the differences arose (i.e., direct or indirect effect). mixed measures anova was used to compare condition means on the dependent variable (mspss) across the three periods of time (baseline, post intervention, and follow-up). mixed measures anova requires a continuous dependant variable (mspss) and a categorical independent variable (time). a repeated measure anova has the underlying assumptions of sphericity. the violation of sphericity is when the variances of the differences between all combinations of related groups are not equal (krueger & tian, ). the assumption of sphericity was tested using mauchly's test of sphericity. time is referred to as the within-subjects factor, whereas the fixed condition variable is referred to as the between-subjects factor (krueger & tian, ). this was used to establish any positive impacts on perceived social support before and after the intervention, within the conditions, and to 	 	 	 ascertain if there are differences between the conditions. ibm statistical package for the social science (spss) version was used for all quantitative analysis. 	 	 	 chapter : results sample descriptions facility descriptions. two facilities were used as the sites for the visiting dog program intervention. both facilities are located in the north okanagan regional district, in british columbia, canada. the facilities selected self-identified as assisted living residences, providing their residents with meals, housekeeping, security, recreation, and on site nursing staff. both facilities also house long-term care patients, however they formed a separate community. residents are free to come and go as they like from the facilities. meals are all provided, and they are assigned seating in the dining area with other residents. recreation coordinators arrange outings and activities weekly, such as outings to local tourist attractions or local shopping centers. neither facility had a visiting dog program running at the time of the present study nor within the previous year, though they both expressed interest and believed it would be beneficial to their residents. both facilities had restrictions against pet ownership. participant descriptions. eighteen residents were presented to during participant recruitment; three of those individuals were not eligible to participate and three individuals who did not attend the recruitment presentation signed up for the study. eight individuals agreed to participate in the group and individual condition intervention, six women and two men. each condition had one male and three females. the average age of participants was years (table . ), ranging from to years old. the most common level of education in the sample was some high school (n= ), while the other participants had completed high school or had had some college and technical training (table . ). the average length of residency in assisted living was months; six participants had moved into the facility within the last year, while the other two participants had lived at the facility for more than five years (table . ). all participants had 	 	 	 previously owned dogs at one point during their lives. many of the participants had family that lived close by and visited with them regularly. at the time the study took place, three participants were married (two participants to each other), two participants were widows, and three participants were divorced (table . ). table . descriptive counts and means for group and individual condition participants. group individual total gender male female age . . level of education some high school completed high school technical some college martial status married divorced widow # of children . . . # of grandchildren . . . length in facility (months) . . . group condition. the group condition participants comprised three women and one man. three of the four participants were still married at the start of the study, two of participants were married to each other, and one participant was divorced. in the six weeks between the last visitation session and the focus group one participant was widowed. the average age of the group condition participants was . and all the participants had completed some high school (table . ). none of the participants in the group condition used mobility aids. all the rooms in the group condition residence were private pay without any government subsidies. participants were all close in age with a range of only three years. the three married participants had lived in 	 	 	 the facility for five months at the time of the study, and the other divorced participant had lived at the facility for more than ten years. individual condition. the individual condition comprised three women and one man. two women were widows at the time of the study; the man and third woman were each divorced (table . ). the two divorced participants were younger than the other participants were, by approximately twenty years, and they commented on how difficult it was to socialize in the facility because of their relative youth and generational differences. all the participants used mobility aids, one used a walker, one used a wheelchair, and two used electric wheelchairs. all the participants could still walk but used the mobility aids when leaving their rooms because of breathing problems, stability problems, and sense of security. most of the rooms in the individual condition facility were publicly funded rooms, with a few private pay rooms. intervention descriptions the structures of the intervention conditions were very similar, and both conditions fell into a rarely strayed from routine after two or three sessions. the individual condition interventions took place at the same time, the same day of the week, and in the same meeting space for each of the six weeks. the meeting place for each participant in the individual condition was different: three preferred to meet in their rooms and one in an unused hobby room. the initial visit acted as an introductory session to both the dog and the handler. (all the participants had previously met with the handler and dog briefly during participant recruitment.) during this initial visit each participant was re-introduced to the dog and handler, and given relevant background details on both. they were told the sex, age, breed of the dog, and were shown a selection of his tricks. in the first session the dog was made to sit beside the participant so they could pet him, hug him, praise him, and be licked by him. 	 	 	 following the initial visit the sessions took on a routine for each participant. sessions began with greetings and pleasantries (e.g. how have you been?), afterwards the conversation generally shifted towards the dog. participants asked questions about him such as, his eating routine, what his favourite toys were, and how long i’d had him. questions about the dog were often mingled in with reminiscing stories about dogs previously owned. sessions always included large portions of time devoted to seeing the dog do tricks and giving him treats. participants were given a demonstration of a few tricks, and then were able to give him commands as they pleased. each session ended with the handler thanking the participant, reminding them of the next session, and a final dog petting. the group condition took place at the same time ( : am), the same day of the week (wednesday), and in the same room for each of the six weeks (media room). the room where the sessions were held was also used as a theatre for movie viewings, with chairs, side tables, a small desk, and an entertainment unit at the front of the room. participants sat in the chairs closest to the front of the room in a line or a semi-circle facing the dog and handler. the initial visit acted as an introductory session to both the dog and the handler. as all the participants knew one another prior to this study, they did not need an orientation with each other. during this initial visit they were all introduced to the dog and handler, and given relevant background details on both. they were told the sex, age, breed of the dog, and were shown a selection of his tricks. in the first session the dog was walked to each participant so they could pet him, hug him, praise him, and be licked by him. the five sessions following the initial visit followed a set routine. sessions began with greetings and pleasantries (e.g. how have you been?), generic talk about the weather, and afterwards the conversation generally shifted towards the dog. participants asked questions about 	 	 	 him such as, his eating routine, what his favourite toys were, and how long i’d had him. this was often mingled with reminiscing stories of dogs previously owned. the dog would move from participant to participant, the conversation would generally include those not interacting directly with the dog, acting as placeholder between one-on-one dog time. sessions always included large portions of time devoted to seeing the dog do tricks and giving him treats. participants were given a demonstration of a few tricks, and then were able to give him commands as they pleased. each session ended with the handler thanking the participants, reminding them of the next session, and final dog petting. interviews and field notes interview and field notes were sorted into the group and individual conditions. the group condition results were divided into four subthemes: personification, bereavement, pet void, and emotional support. although the individual condition touched on similar themes to the group condition the interactions were focused mostly between the handler and the participants, therefore the individual condition results were coded into one subtheme. an unexpected theme that developed from both conditions was reminiscence. similarities and difference between conditions are illustrated in table . . table . similarities and difference between intervention conditions similarities differences • routine • context driven • sessions began with pleasantries • sessions ended with tricks • reminiscence • dog primary source of program enjoyment • one on one interactions with dog group condition: • conversation about dogs and pet ownership • primary interactions between dog and participant individual condition: • conversations about family • primary interaction between participant and handler 	 	 	 group condition. the group condition was focused primarily around interactions with the dog. each session would begin with greeting and physical interaction with the dog, and would occasionally include unprompted interaction with the handler. also all the conversation that took place was either instigated by the handler or was directed through or at the dog. for example, one participant stated the following: ‘oh you are such a nice boy. [petting the dog] did you have a good sleep last night? [directed to dog] huh? did you have a good sleep? i did. yeah i did.’ (facility b, age ) as the intervention continued and the participants became more familiar with the handler, more conversation was directed to her, rather than primarily through the dog. however, the conversation directed at the handler was starkly different from the conversations had with the dog. questions directed to the handler were mostly information seeking, questions primarily about the dog (e.g., how long did it take you to train him?), about the study (e.g., will we be able to see the results?), and about her schooling (e.g., how long until you are finished?). in contrast the conversations through or directed to the dog rarely needed contribution from the handler or other participants. these conversations consisted of praise, longing for a pet, or personifying the dog by talking for the dog. at least one participant in every group session would stroke the dog and tell him how beautiful and special he was, for example: ‘mommy's got you looking so pretty. pretty boy, you sure are. you just love compliments.’ (facility b, age ) personification. the final theme that came out of the conversations with the dog was the tendency of the participants, and occasionally the handler, to talk for the dog or have a conversation like the dog was replying. some of these overlapped with the praising of the dog, for example, asking him if he knew he was a good boy and replying “of course you do”. some of this was not just an initiated conversation but an interpretation of what the dog must be thinking 	 	 	 or what he would have said in those situations. these kinds of interactions happened with all the group participants during multiple sessions. one such conversation took place between two participants, one of which replies to the questions as the dog: participant : that a good boy, aren’t you? hey. yes a beautiful little boy! are you glad to see me? [baby voice] participant : he is, because he went right to see you when you walked in. participant : awe. participant : he knew you [laugh] he says, “i’m just going to park here and i’m going to be [participant name] friend for the day!” (facility b, ages ) bereavement. between participant interactions were facilitated by conversations centered on the dog. these interactions were most commonly replies to or agreements with stories or opinions shared by another participant. on two occasions, two of the participants shared stories of grief from previous dogs they had to put down. the participants were visibly upset during these conversations but reassured each other that they had made the right decision in ending their pet’s suffering. this conversation took place between two participants who had dogs all their lives and still struggled with the loss of their pets: handler: it’s a hard decision to make. participant : but he is counting on you to make that decision when they are suffering. participant : oh but it was so hard. participant : i know i have been through it many times. but they count on you [voice breaking], they count on you to make that decision. participant : i know they do but it was so hard. the look in his eyes, was “oh just let me go.” 	 	 	 participant : yeah he’s in pain he wants to go. participant : yeah i had to do it. worst thing i ever did in my life. worst thing and the best thing.’ (facility b, age and age ) pet void. another theme from the conversations with the dog was the sadness and longing for a pet they gave up, for any pet, or for the intervention dog to live with them. one of the group participants had to give up two dogs before she and her husband could move into the facility, and despite having her husband for company, wished there was a dog in her life to cuddle with. this participant said things like the following almost every session to the visitation dog: ‘well i could just live with you. yeah, you would make me very happy.’ (facility b, age ) participants often referred to pets as family and used language that personified the visiting dog. the handler was referred to as the ‘mom’, former pets were referred to as ‘baby’, and the participants’ children’s pets were referred to as ‘grand-dogs’. it was established in the group without contest the importance of pets as company and their value as a source of comfort and companionship. participants would often comment on how lucky the handler was to have the visiting dog as a companion and would lament not being able to own a dog. participants looked forward to the visits with the dog and always left the sessions with a smile on their face. here are two examples of participants discussing how much they enjoy the sessions and how they think other people enjoy the sessions: ‘it’s really nice to see him. yeah it’s really nice. i think it’s good to have pets – dogs come in. i think it’s nice. and i think that people who are – we are together so we are really fortunate – but for people who are lonely in a place like this i think they get a lot out of it. you know i think they get the – i know [another participant] just loves it.’ (facility b, age ) 	 	 	 and, ‘i know she hasn’t been feeling well. so i hope she can [make it to the session], because she really looks forward to it. in fact she even cancelled her x-ray appointment, last week or the week before. she was supposed to go in for x-rays on wednesday morning, she forgot about the dog. so she cancelled the x-rays to see the dog and her husband was so mad at her [laugh]. but she got in the next day so that’s good. oh here she comes!’ (facility b, age ) during the group condition the primary interactions took place between the dog and the participants and sessions were supplemented by handler interactions. most interactions with the handler were questions pertaining to the dog and filler comments about the weather and current events. these interactions were often placeholders for the participants not interacting directly with the dog. during the focus group when asked about the primary enjoyment, one participant commented that of course they were mostly there for the dog, and without him they wouldn’t have interacted with the handler at all. emotional support. the group condition sessions resulted in a few occasions where the meaningful function of social relationships was seen through the combined comforting of participants from other participants, and using the dog as a soothing or comforting device. the topic of pet euthanasia came up in conversation and what always followed was a display of grief from one or two participants. participants would either call to the dog for comfort, other participants would direct the dog over, or the handler would direct the dog over. participants would also reassure one another by sharing stories of their own experiences with pet loss, how you never got over the loss of an important family member, and how ending their pain despite your guilt was the right decision. during the final group visit one participant was feeling unwell 	 	 	 due to her husband’s worsening health. the visiting dog stayed with her for most of the visit and the other participants did their best to comfort her. the following is an example of part of this conversation and her leaning on the dog for emotional support: handler: how are you doing today? participant : not so good. my husband is worse. participant : i told her she looked very nice today. that’s such a nice colour on you. participant : my husband is back on bed rest. participant : oh is he? participant : they have to wheel him down for dinners. he was in the hospital for days and he has just been deteriorating ever since. he’s not strong and healthy like you. [to barry while stroking and hugging him] (facility b, ages ) individual condition. the individual condition sessions were similar to the group condition, however the primary interactions took place between the handler and the participants, facilitated by the dog’s presence. each session would begin with greeting and physical interaction with the dog, and would include unprompted interaction with the handler. most of the conversation that took place was either instigated by the handler or involved questions about the dog. participants in the individual condition shared many more personal stories with the handler that did not always involve reference to a previous pet. whereas most of the group condition stories centered around previously owned pets, the individual condition participants shared stories about their families, where they grew up, where they used to live, and where they 	 	 	 used to work. the individual condition sessions also had many more interactions with staff and other residents because the visits were not always in a secluded area of the facility. each day staff members greeted the dog (not the handler) by name when they both entered the facility. a common observation that came up among participants was not remembering the handler’s name for the first few sessions, whereas they all remembered the dog’s name: participant: what’s your name again? handler: lindsay. participant: lindsay! handler: and this is barry. participant: oh yes i remember barry! (facility c, age ) the individual condition sessions would begin with petting the dog and giving him treats, but could also develop into the dog resting at the feet or beside the chair of the participant while the majority of the interactions took place between the handler and the participant. on one occasion, while trying to encourage interaction between the dog and the participant, the handler was told not to worry about having the dog involved, and that they could just chat. reminiscence. the most salient code from the semi-structured interviews was ‘reminiscence’. this code was developed to capture positive storytelling and life histories shared between participants and with the handler. reminiscence therapy is a psychology technique often used in senior populations and in visiting dog programs (friedmann et al., ). st. john ambulance training encourages handlers to promote reminiscing about past pet ownership as a way to connect to the dog and handler (st. john ambulance, ). the most common reminiscence found amongst the participants was sharing stories of past pet and dog ownership. 	 	 	 this included time they used to spend with their pet, silly stories about their dogs, and sometimes about other family members’ pets. for example, this participant from the group condition shared this story about interacting with her son’s dogs: my son had two big dogs and i would give them their treats. i could hear them out there. they would just be sitting in my garage waiting for their treats. charlie would leave his because he liked a good scratch first, but lucy would gobble hers down right away and then get a good scratch. (facility b, age ) participants would often share stories of past dog ownership as a reaction to something the handler had shared with them, or something the dog did (e.g. a type of trick):‘i used to do that with my dogs all the time.’ (facility c, age ) particularly in the individual condition, participants would share stories from their past which were not always related to their experiences with pets. participants shared stories about growing up and how things had changed over the years. one participant shared the story of growing up in nazi occupied holland and how she met her late husband who was a canadian solider. participants also shared stories about their families and their relationships with children, siblings, and close friends. one participant shared how visiting with the dog brought up old memories: ‘i was thinking of barry after our last visit and the dog i had in my s, a black lab.’ (facility c, age ). participants also shared the enjoyment they received from the visits with the dog and how it helped break up the repetitiveness of life in the facilities. participants from both group and individual conditions would comment on this, for example: ‘that’s why we like you to come visit, because you make people happy don’t you? you do, you’re such a nice boy. you are just a bit of sunshine.’ (facility b, age ) and, 	 	 	 ‘i was looking forward to it yes. i almost lost track of time earlier, but then i noticed the date on my tv. everything is always the same here every day so it’s easy to lose track of the days.’ (facility c, age ) focus groups only one individual from the group condition declined participation in the follow-up focus group. remaining members of each condition met in the facilities approximately six-weeks following the intervention. all participants reported thoroughly enjoying the visits with the dog and that it was a “treat”. participants discussed how they incorporated it into their routine and gave them something to look forward to each week. one participant from the group condition commented: ‘i think a lot of people missed out because you are just wonderful to get to know [barry].’ (facility b, age ) when participants were asked what it was about the program they enjoyed they all resoundingly agreed that it was the dog. despite primary interactions with the handler in the individual condition, the participants left the program impacted by the dog, not the handler. as discussed in the previous section, the majority of the interactions in the individual condition were between the handler and the participant. much like during the intervention the participants discussed the dog visits as breaking up the routine of living in the facilities. while they found it helpful that the handler was approachable and good natured, the lasting impression was all about the dog. one participant from the individual condition expressed this as the dog bringing in something different and unique to the facility: ‘we talk to and see people all the time, nothing against you, but it’s definitely the dog. there is no access to animals here.’ (facility c, age ) the group condition also experienced similar reactions to the intervention, where their fondest memories from the visits were interactions with the dog directly. contrasting with the 	 	 	 individual condition however, was the shared connection the group participants had after the intervention ended. the participants all shared a dinner table and commented on how the visiting program added to that relationship: ‘we had dinner in common. now we have that we both love barry.’ (facility b, age ) mixed measures anova the purpose of the mixed measures anova was to test whether the mean multidimensional scale of perceived social support (mspss) scores differed between conditions (main group effect), whether the mean mspss scores differed over time (main time effect), and whether the mean mspss scores differed over time between conditions (group-by- time interaction effect). this was to address the first research question, whether the intervention had a positive impact on perceived social support and if there were differences between the conditions. mauchly's test of sphericity indicated that the assumption of sphericity had not been violated and data were normally distributed. there were no significant results for the three tests performed; the effect between conditions, f ( , ) = . p > . , the effect over time, f ( , ) = . p > . , and the effect between conditions over time, f ( , . ) = . p > . . 	 	 	 chapter : discussion the aims of this study were to describe and interpret the effect of a visiting dog program on seniors’ perceived social support and to determine whether there were differences between group and individual conditions. this study utilized the definition of social support as the meaningful function provided by social relationships, through emotional support to interpret these effects. to address the research questions and hypotheses, interviews, field notes, and focus group data were transcribed and coded according to the social support hypothesis of the direct and indirect effect of companion dogs. perceived social support was measured using the multidimensional scale of perceived social support and analysed using mixed measures anova. results suggest that the visiting dog program did have a positive influence on participants’ social support, although future studies are needed to expand this area of research. hypothesis “hypothesis : both individual and group dog visitation conditions will have a positive impact on participants’ perceived social support, both directly and indirectly.” looking solely at the results from the mspss mixed measures anova the response to the first hypothesis would imply that the visiting dog program had no effect on individuals’ perceived social support. however, the semi-structured interviews and field notes illustrate something much more complex than the research question (do visiting dog programs have a positive impact on participants’ perceived social support?) can address. all the participants of the study reported that they enjoyed participating in the program and looked forward to the visits from the dog and the handler. the sessions allowed the participants to interact with new people in a new setting and provided them with conversation topics. 	 	 	 the results from the quantitative analyse must also be examined within the context of a small sample size. considering the sample size of eight and the theorized small effect size it is not surprising that the results from the mixed measures anova were not significant. this does not mean that given a larger sample size the results would have been significant, but that the results would be more reliable given a larger sample size. despite being unable to quantitatively measure a change in perceived social support, it was noted that participants held the belief that the visiting dog programs were good for seniors and that pets brought joy to people in a fun and exciting way that was sometimes lacking in their everyday lives. participants in both conditions felt so strongly about the benefits of visiting dog programs that they expressed their surprise that so few residents were willing to participate. the belief in the benefit of the program was consistent with previous studies done, which were also unable to produce quantitative evidence on the effectiveness of these interventions (phelps et al., ). phelps et al. ( ) investigated the effects of dog visits on depression, mood, and social interaction in nursing homes and found no significant results. despite this, all the participants wanted to continue receiving visits from the dogs (phelps et al., ). is it then the belief that visiting dog programs are beneficial that contributes to the positive outcomes observed in studies? considering the deficiency in robust evidence on the effectiveness of these programs, the users and researchers hold strong biases towards their benefits. hypotheses and “hypotheses and : the primary effect on participants in the individual visiting dog condition will be the direct effect (dog-human interaction). the primary effect on participants in the group visiting dog condition will be the indirect effect (facilitating human-human interaction).” 	 	 	 the results from the interviews and field notes were opposite to the hypotheses. the distinct difference between the two conditions was the effect of the dog. the primary effect of the dog in the group condition was direct, from the participants having extensive one-on-one interactions with the dog, which did not include the group or the handler. the primary effect of the dog in the individual condition was indirect, facilitating conversation and interactions among the handler and the participants, and facilitating conversation and interactions with other residents at the facility. the group condition conversations and interactions centered on the visiting dog and was comprised of three types of interactions (figure . ): ( ) direct interactions between participants and the dog, ( ) indirect interactions between participants facilitated by the dog’s presence, and ( ) placeholder interactions between the handler and the participants. of these three interactions, the most common were the direct interactions between participants and the dog. this was an unexpected finding, contrary to the hypothesis, which posited the main effect of the group condition to be the indirect effect. very little interaction from the handler was needed during these sessions, which resulted in the participants forming a primary bond with the dog rather than each other or the handler. all the conversation that took place with the handler was either initiated by the handler, or was directed through the dog. for example, this conversation took place between a participant and the visiting dog: ‘oh you are such a nice boy. [petting the dog] did you have a good sleep last night? [directed to dog] huh? did you have a good sleep? i did. yeah i did’. (facility b, age ) although the group condition participants did become much more comfortable with the handler as the six weeks progressed, the participants all identified the dog as their primary source of enjoyment and the reason for their participation. 	 	 	 during the follow-up focus group, the group participants reported that the visitations with the dog had given them another common bond to their pre-existing relationship. this suggests that despite focusing primarily on the dog during the sessions, the participants were able to form a bond because of their shared experience with the visiting dog. although the indirect interactions between participants during the visitation sessions were secondary to the direct interactions, the presence of the dog facilitated interaction between participants after the visitation intervention ended. this lends further evidence to the indirect effect of dog companionship, even after the dog is no longer present (mcnicholas & collis, ). this also lends further evidence that the social support theory can be used in a visitation session, rather than strictly in ownership studies. the researchers hypothesized that the primary interaction would be the indirect interactions between participants, facilitated by the presence of the dog. while these were not the primary interactions that took place during the sessions, they did persist after the intervention was completed. this is the first study, to date, to produce evidence directly linking dog visitation interventions to the social support theory. the only other study, to date, to compare group and individual conditions did not find evidence of the dog visitations facilitating interactions between participants (banks & banks, ). researchers surmised the reason the dog visitations did not facilitate interactions between participants could have been due to hearing impairment, incompatibility in the groups, or bias from previous relationships (banks & banks, ). however, the study did not follow up to see if the visitations with the dog facilitated interactions after the dog was no longer present. the third interaction that took place in the group condition was the placeholder interactions between the handler and the participants. the intervention was not designed to 	 	 	 minimize the contribution of the handler, however, this naturally occurred as the intervention progressed in the group condition. interactions that took place between the handler and participants occurred in between interactions with the dog. this was an unexpected development in the group dynamic. as the dog took turns with one-on-one time with each participant, the handler and other participants would discuss whether, the dog, or sometimes share stories. these interactions prevented the room from filling with uncomfortable silence while the participants waited for their one-on-one time with the dog. participants in one-on-one time with the dog generally did not take part in the placeholder discussions with the handler and other participants. this dynamic has not been explored in the research to date. this may be because handler effects have not been taken into account in previously conducted research. 	 	 	 figure . interactions between participants, handler, and dog in the group condition unlike in the group condition, the individual condition conversations and interactions were initiated by the presence of the dog, but continued without him. although different from mcnicholas and collis’s ( ) description of social interactions being paved after the dog was gone, the visiting dog in this study did facilitate and “break the ice” for participants to become comfortable interacting with the handler in a social environment. the dog was the entry point 	 	 	 into the relationship between the handler and the participant, which would not have existed without the dogs’ presence as a facilitator. reminiscence reminiscing was a prevalent theme raised in all the visitation sessions. participants enjoyed sharing stories about past pets, about family, and about themselves. while this was not a result the study aimed to find, it comes up in some of the literature on visiting dog programs. however reminiscence has not been investigated as a component of visiting dog programs, to date. this unexpected component of the visiting dog programs should be explored further to determine its relevance in interventions of this kind. friedmann et al. ( ) used reminiscence therapy as the control group for their study on animal assisted therapy and functional status of seniors with mild to moderate cognitive impairment. although they did not find any significant differences between groups or across time it is the only study to highlight the close relationship reminiscence has with visiting dog programs (friedmann et al., ). other studies briefly mention that reminiscing was one of the activities participants did with the dogs, but none discusses its relevance to the intervention (banks et al., ; richeson, ; vrbanac et al., ). the stories shared in each condition also used to distinguish between the primary relationships formed during the sessions. the group condition participants shared stories about past pet and dog ownership, while the individual condition participants shared stories mostly unrelated to experiences with pets. individual condition stories were life stories, growing up in nazi occupied holland or how they met their spouses. stories of where they grew up, their family life, kids, parents, partners. pets would sometimes come up but mostly it was old memories not associated with their pets. this form of reminiscence is often referred to as 	 	 	 ‘simple reminiscence’ in the literature, the sharing of experiences or memories in response to stimulus (in the present case the stimulus was a dog) (haslam et al., ). while exploring reminiscence therapy and seniors, two main types reminiscence stimulus were common: story and song. one study compared different group outcomes based on the type of stimulus (haslam et al., ). researchers compared the outcomes of three groups: a story reminiscence group, a secular song reminiscence group, and a religious song reminiscence group (haslam et al., ). researchers hypothesized that ‘group fit’ moderated health outcomes seen in reminiscence therapy (haslam et al., ). they found no change over time from the intervention alone, but found significant interactions with the type of reminiscence group (haslam et al., ). group fit with the story reminiscence group was associated with improved cognitive outcomes and greater life satisfaction, and group fit with the religious song group was associated with decreased anxiety and greater life satisfaction (haslam et al., ). in another study exploring reminiscence using song stimulus, had six women participate in six group sessions using meaningful music of their choice (somody, ). participants used the music of their choice to describe current life events and future hopes (somody, ). following the sessions participants were interviewed individually to describe their experience (somody, ). outcomes from the group sessions included increased self-awareness, relationship building, and bereavement support (somody, ). reminiscence has shown promising outcomes in senior participants, however the efficacy of these programs has also been questioned (haslam et al., ). for as many studies that show positive outcomes from reminiscence, and equal amount show no change (haslam et al., ). this ambiguity surrounding the efficacy of reminiscence is similar to the ambiguity surrounding the efficacy of visiting dog programs. incorporating reminiscence into the visiting dog 	 	 	 intervention model could expand our understanding of the underlying dynamics of these programs. however, if small sample sizes and inconsistent methodologies are continually utilized in reminiscence and visiting dog intervention studies, the ambiguity surrounding their efficacy will also continue. naturalistic intervention the present study is the first, to date, study to examine a visiting dog intervention that replicates naturalistic interventions. the present study did not attempt to systematically isolate the handler from the intervention. a naturalistic intervention was replicated because the handler is a necessary component of the intervention to maintain participant and dog safety, and interventions of this kind can, therefore, not take place without the handler. the findings of the present study also suggest that the importance of the handler extends beyond maintaining participant and dog safety. the primary interactions in the individual condition were between the handler and the participants. the handler was a necessary component of the individual condition to avoid an artificial research environment. one goal of the intervention design was to create a participant lead natural environment for the sessions to take place within. this would not have been possible had the handler been confined to a script, or had the handler been restricted from interacting with the participants all together. considering the pivotal role the handler played in the individual condition, the restriction of the handler could attest to part of the reason for previous unsuccessful one-on-one interventions (phelps et al., ). the handler was also necessary in the early stages of the intervention to engage participants with the dog. efficient handler and dog teams work together to create an environment in which participants feel comfortable engaging with both the handler and the dog 	 	 	 (pichot, ; st. john ambulance, ). this manifested in the group condition during the initial sessions. the handler would encourage the dog to go from participant to participant to ensure they each got time with the dog. the handler also showed the participants tricks the dog could perform so the participants could interact with the dog in the future without handler intervention. even though the handler was a necessary component of the intervention, the sessions remained ‘dog-centric’. group and individual condition participants were explicit during the focus group that the dog, not the handler, was the reason for their enjoyment of the intervention. this suggests that the effects from the intervention can be attributed to the dog, and not the handler. however, attributing effect on social support to either the dog or the handler must be approached cautiously. the dog and the handler are a team in the visitation intervention, and do not exist separate from one another, as they are both necessary components. this relationship warrants further exploration for the understanding of the dynamics involved in a dog visitation intervention. conclusion the purpose of the present study was to investigate the effect of a visiting dog program on seniors’ perceived social support. social isolation and depression are common among senior populations and in assisted living facilities (krause-parello, ). transitions into assisted living facilities can be very traumatic and detrimental to seniors’ health (howie et al., ). strong social ties and social engagement can be protective against negative life events faced by seniors (howie et al., ). as social support is an important determinant of seniors’ health (gilmore, ), it is likewise, important to develop interventions targeted at promoting social support in seniors. 	 	 	 interventions aimed at promoting social support in seniors come in several different forms (cattan et al., ; findlay, ). companion dogs have been show to influence several indicators of social support, including, decreasing depressive symptoms, a decrease in loneliness, an increase in social engagement, and bolstering social support networks (banks et al., ; crowley-robinson et al., ; filan & llewellyn-jones, ; krause-parello, ; mcnicholas & collis, ). despite this, not every senior can, or wants to, have a companion dog. dog visitation interventions have the potential to exhibit the benefits on companionship with a dog, without the burden, or restrictions, of owning a dog. the present study examined the relationship between visiting dog programs and outcomes in social support in seniors residing in assisted living facilities. the research was undertaken using a novel design aimed at capturing naturalistic interventions to make practical recommendations. the present study used a mixed method exploratory comparative intervention design. the intervention exposed participants to a visiting dog program over the course of six weeks. two conditions were compared, group and individual, to explore similarities and differences, to answer two questions: ( ) do visiting dog programs positively impact perceived social support and are there differences between individual and group conditions, and ( ) are those differences attributable to direct or indirect effects of dog visiting programs. addressing these questions were four main findings: ( ) the visiting dog program showed evidence of emotional support and indirect effects in the group condition, ( ) reminiscence is a necessary component of the intervention which must be explored further, ( ) the challenges of recruiting seniors and the importance of gatekeepers to participants, and ( ) replicating naturalistic visiting dog programs can be ‘dog-centric’, without an artificial removal of the handler. 	 	 	 to address question , yes there is evidence that a visiting dog intervention positively impacts social support, and there were differences between the individual and group conditions. evidence of emotional support from the direct interaction with the visiting dog was shown in the group condition. the study also found evidence of the dog visitation intervention facilitating relationship building between participants in the group condition. these findings suggest that the intervention had a positive impact on participants’ social support. however, this evidence was not found in the individual condition. this was the main difference between the two conditions. although participants from both conditions reported enjoying the intervention, and in particular the dog, no evidence of a positive influence on social support was seen in the individual condition. as for question , are these differences attributable to the indirect and direct effects of the visiting dog intervention? no, these differences are far more complex than the indirect or direct effect of the intervention. the handler’s role in the intervention was previously unexplored, and particularly important in the individual condition. why differences exist between group and individual conditions in visiting dog interventions will only be answered when the intervention design and experience is explored more in-depth. the reminiscence component of these interventions is previously unexplored, although alluded to in some of the research (banks et al., ; friedmann et al., ; richeson, ; vrbanac et al., ). limitations of the present study must also be attended before addressing what attributed to the differences between the group and individual conditions. limitations although this study was able to contribute novel findings and new methodology to the field, limitations exist. the study was unable to meet the targeted fifteen participants, leaving the 	 	 	 study with a very small sample size. the data collected were rich with experience, a larger sample would have added to the robustness of findings and added credibility to the results. the study was also limited in its resources. given a short time frame and only one handler/dog team the data collection would have been strained, and possibly compromised, had the sample been twice the size. a larger sample size would have required more than one visitation team, or, alternatively, data collection could have been done in phases to alleviate the strain on resources. according to feedback from recreation coordinators, those who participated and who dropped out of the study, starting data collection in the summer months was a poor choice. participants are less interested in committing to a program in the summer months, which are already filled with activities. it was suggested by the recreation coordinators that starting in the cooler months of the year might have attracted more participants. recruitment was the biggest challenge faced throughout the study, and roadblocks were met at each level. although more facilities expressed interest initially, only the two facilities we ended up with had personnel who had both the time and the willingness to help initiate the project. recreation coordinators became the gatekeepers to successful participant recruitment and facility interest. for instance, the first facility that was recruited was very enthusiastic about participating; however due to vacation and scheduling conflicts with the recreation coordinator, participant recruitment stalled and the facility had to decline participation. akin to facility recruitment, participant recruitment would also have been impossible without buy-in from facility staff. the residents of the facilities only became curious and interested in the visiting dog program after we had completed recruitment and were almost finished with data collection. along with the difficulties finding participants were the challenges of finding participants that fit the inclusion and exclusion criterion. a study done in australia 	 	 	 came to similar conclusions about the importance of gatekeepers and key informants for recruiting and retaining seniors in their research (feldman, radermacher, browning, bird, & thomas, ). a literature review found that challenges faced when recruiting seniors can lead to underrepresenting the population of interest, which can result in misrepresenting correlations or missing them entirely (thompson, heller, & rody, ). recruiting seniors into research studies is particularly challenging (bonk, ). in the present study, targeting and recruiting socially isolated seniors was near impossible. the inclusion/exclusion criteria of the study were designed to target seniors who were not often visited by friends and family, and who were not regularly engaged in social activities. however these criteria, as an objective measure of social isolation, did not capture seniors who had low levels of perceived social support or those identified as being isolated. recruitment relied heavily on recreation coordinators promoting the study to those they felt would benefit from a visiting dog program. without their advocacy the study would not have had any participants. one study, which addresses the challenges of recruiting socially isolated seniors, also mentioned the importance of recreation coordinators (activity directors) in the participation in programs that promote social support and engagement (winningham & pike, ). this study identified recreation coordinators as the staff members most likely to implement and advocate for programs of this kind (winningham & pike, ). if the present study were repeated a greater emphasis would be put on the importance of developing strong relationships between the research team and recreation coordinator. they are the gatekeepers into assisted living facilities and participant recruitment started and stopped with them. however, solving the problem of recruitment is much more complex than simply having a recreation coordinator as your advocate. when searching for articles on the challenges of 	 	 	 recruiting socially isolated seniors, none of the articles on the topic of socially isolated seniors described how they were identified, what caused them to become isolated, or whether or not they were in fact isolated. a review article that examined the effectiveness of interventions targeting socially isolated seniors identified seventeen articles using multiple designs (findlay, ). of those interventions only two targeted socially isolated seniors, and only one of those studies had a positive impact on loneliness and social support (findlay, ). most interventions were focused on prevention of social isolation, and many were effective at providing support for at risk seniors (findlay, ), but those studies do not help in the identification and intervention with seniors who already are socially isolated. because the present study was unable to recruit socially isolated seniors, we are unable to conclude that visiting dog interventions are an effective tool for promoting social support. however, because the study was able to show positive impacts on its participants’ emotional support and relationship development, visiting dog programs should be assessed as possible prevention interventions for socially isolated seniors. consideration must also be made about the efficacy of the individual condition for targeting socially isolated seniors. in a systematic review of interventions aimed at preventing social isolation, ten studies were effective, nine of the ten studies were group based (cattan, white, bond, & learmouth, ). the present study found evidence of emotional support and relationship building in the group condition but not in the individual condition. this is similar to the findings from the systematic review, which found group based interventions consistently demonstrated effectiveness in reducing loneliness and increasing social contact, whereas individual based interventions were consistently ineffective at reducing loneliness and social isolation (cattan et al., ). 	 	 	 another limitation of the study was self-selection bias. self-selection bias can occur when comparison groups are comprised of individuals who choose to join them, rather that researcher assigned (sage publications, ). all the participants were previous dog owners and volunteered to participate because they liked the idea of visiting with the dog. the sample was predisposed to enjoy the intervention and therefore, the results could be biased. during the focus group participants also discussed how they were surprised more individuals did not participate, because they believed it to beneficial, which could also bias the findings. contributions the present study was the first to date use of the social support theory in a visitation setting and the first to date use of a naturalistic intervention design. this combination produced the first to date evidence of emotional support and the indirect effect in a visitation setting. the present study also added further evidence of companion dogs’ ability to facilitate relationship building even after the presence of the dog is removed. future directions this study was limited by a small sample size. although many studies in the field of dog visitation research have suggested larger sample sizes, it bears repeating. however, as was encountered in the present study, recruiting large numbers of seniors can be extremely challenging. by highlighting the importance of gatekeepers, such a recreation coordinators, participant recruitment can be successful within appropriate timelines. multiphase recruitment could also facilitate recruitment while saving on resources such as trained dog and handler teams. selection bias must also be considered in the development of new studies. as discussed, all the participants were previous dog owners and predisposed to enjoyment of visiting with a dog. selection of participants and the acknowledgement of this bias are critical for adding 	 	 	 credibility to the results of this research. incorporating key variables, not examined in the present study, could also lend insight into the impacts and nuances of visiting dog programs, key variables such as; marital status, age, health status, length of institutionalization, proximity of family and/or friends. future studies should also consider incorporating reminiscence into their design to further explore its significance as a component of the intervention. friedmann et al., ( ) used reminiscence as a control group, however, it could be used as a comparison group. future studies might expand on the group and individual condition comparisons by adding reminiscence as a third condition. using this design the intervention could still approximate a naturalistic program without prescribed reminiscence incorporated into the visiting dog program. reminiscence was a spontaneous component of the visiting dog program and comparisons to a prescribed reminiscence program would lend insight to its impacts in a visiting dog setting. social isolation presents a real risk for seniors moving into assisted living facilities. the group condition of the visiting dog program showed potential for the development of relationships facilitated by a companion dog. however, there are still many unknowns in this area of research. further development is needed in naturalistic interventions, the incorporation of reminiscence, and larger samples over longer periods of time. critical and robust research designs will foster the development of this field without flooding the literature with more anecdotal and biased studies. until robust studies are completed, visiting dog programs will not gain credibility as a realistic intervention for socially isolated seniors. 	 	 	 references anderson, k. a., lord, l. k., hill, l. n., & mccune, s. 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( ). a pet therapy intervention with geriatric psychiatry inpatients. the american journal of occupational therapy : official publication of the american occupational therapy association, ( ), - . 	 appendices appendix a: conceptual model of social support’s multilevel impact on health (berkman et al., ) appendix b: facility director introduction letter dear [facility director/recreation coordinator], i, lindsay burton, a masters student from the department of health and exercise sciences university of british columbia okanagan, invite your facility to participate in a research project entitled the impact of visiting dog programs in seniors social support the purpose of this study is to replicate naturalistic dog visiting interventions to determine if there are differences in social support outcomes. should your facility choose to participate, your residents will be invited to take part in a visiting dog intervention. the nuances of dog visitation programs are not well understood and the residents who take part in these programs can provide very insightful information. individuals who participate in visiting dog programs have experienced reductions in depression symptoms, loneliness, and stress. other benefits include increased overall well-being, self-rated health, and enhanced socialization. if you choose to participate i will put up posters advertising the study and will give a presentation to the residents giving further information about the study. i will need room to give my presentation and use of common areas for the intervention. the expected duration of this intervention is approximately six weeks, with a follow-up weeks after the intervention begins. the dog will be brought in - days per week for six weeks. ideal participants will be less socially active (as they have been shown to benefit the most from these types of interventions), not currently visited by a dog, and have no fear or allergies to dogs. i will be undertaking all data collection and am a certified dog handler through st. john ambulance. if you are interested in participating we will set up a meeting to further discuss the facilities eligibility, recruitment strategies, liability, time and space commitment, and answer any questions that may have arose. if you have any questions, please feel free to contact me (see below for contact information). i will follow up this email with a phone call in one week if it goes unanswered. thank you, co-investigator: lindsay burton, ubc, - - , l.burton@alumni.ubc.ca masters student in the department of health and exercise sciences principal investigator: dr. colin reid, ubc, - - , colin.reid@ubc.ca 	 	 appendix c: advertising poster you have an opportunity to take part in a study that seeks to further understand the relationship between visiting dog programs and seniors’ social support. what is the impact of visiting dog programs in seniors social support? please help us find out! this study is being taken on as a masters thesis project at the university of british columbia okanagan in the school of health and exercise sciences. for more information: come to our presentation wednesday sept. th at : am or see ivana for more detailsdetails lindsay burton: l.burton@alumni.ubc.ca - - colin reid: colin.reid.ubc.ca - - 	 appendix d: individual condition consent form ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! individual condition consent form the impact of visiting dog programs in seniors social support i. who is conducting the study? principal investigator: dr. colin reid, ubc, - - , colin.reid@ubc.ca co-investigator: lindsay burton, ubc, - - , l.burton@alumni.ubc.ca masters student in the department of health and exercise sciences this research is for a graduate degree and will be publish as part of a master’s thesis, which is a public document available on the internet via circle. this research will also be used for publication in journal articles. ii. why should you take part in this study? you are being invited to take part in this research study because we want to learn more about the role of visiting dog programs on an individual’s social support. this study will help us learn more about dogs’ roles in social interactions and their potential use in health promotion interventions. individuals who are eligible for this study: • not allergic to dogs • unafraid of dogs • not currently visited by dogs. iii. what happens to you in the study? if you decide to take part in this research study, here are the procedures we will follow: you will be asked to fill out a questionnaire three times, before and after the dog visitation sessions, and six weeks after the dog visitation sessions end. the questionnaire takes no more than minutes to fill out. during the study you will be asked to participate in individual dog-visiting sessions of up to minutes approximately once a week. during these visits you will be asked questions by the co-investigator which will be recorded by an audio device. ubc okanagan school of health and exercise sciences 	 ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! six weeks following the dog visitation sessions, you will be asked to participate in a focus group, which will take approximately one hour. the purpose of the focus group is to gain your thoughts and reflections of the dog visitations. the focus group will be conducted with approximately five participants. focus group sessions will be recorded on an audio device and facilitated by the co-investigator. affirmation of consent will be collected before the focus group sessions begin. to ensure confidentiality digital audio recordings will be accessible only by the principal and co-investigator. files will be stored for five years after publication on a secure computer and then deleted. the total time commitment for this project is up to hours over months. iv. study results the results of this study will be reported in a graduate thesis and may also be published in journal articles. a report of the research findings will be made available to all participants. v. potential risks of the study we do not think there is anything in this study that could harm you. there are health risks associated with pet allergies, therefore if you are allergic to dogs you will be ineligible to participate in the study. the visitation dog has been specially selected to avoid any health risks. the dog has been specially trained not to jump up on people, to lean on people, or to show any signs of aggression. the dog is also carefully monitored for cleanliness and health. the co-investigator is a certified dog handler and is trained to minimize risks to both the participants and the dog. following the study there is a risk of sadness from the termination of dog visitation sessions. to address this risk, following the study, all participates will be given the contact information of a local dog visitation program such as st. john ambulance therapy dogs. vi. what are the benefits of participating? there are many ways in which this study may benefit you. individuals who participate in visiting dog programs have experienced reductions in depression symptoms, loneliness, and stress. other benefits include an increase in overall well-being, self-rated health, and enhanced socialization. vii. how will your privacy be maintained? 	 ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! your confidentiality will be respected. information that discloses your identity will not be released without your consent unless required by law. all data will be stored on a secure computer only accessible by the principal and co-investigator. files will be stored for five years after publication then deleted. information linked to the identity of participants will not be included in any publications, masters thesis or journal publications. due to the nature of focus groups, confidentially is limited. all participants are encouraged to respect the privacy of other group members and, to this end, not disclose what is discussed with non-participants. viii. contact for information about the study if you have any questions or concerns about what we are asking of you, please contact the study co-investigator. contact names and telephone numbers are listed at the top of the first page of this form. ix. who can you contact if you have complaints or concerns about the study? if you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the research participant complaint line in the ubc office of research ethics toll free at - - - or the ubc okanagan research services office at - - . it is also possible to contact the research complaint line by email (rsil@ors.ubc.ca ). you may also contact the chair of the interior health research ethics board at - - or via email at researchethics@interiorhealth.ca. 	 ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! x. participant consent and signature page taking part in this study is entirely up to you. you have the right to refuse to participate in this study. if you decide to take part, you may choose to pull out of the study at any time without giving a reason and without any negative impact on you. • your signature below indicates that you have received a copy of this consent form for your own records. • your signature indicates that you consent to participate in this study. • your signature indicates that you consent to being recorded. ____________________________________________________ participant signature date ____________________________________________________ printed name of the participant signing above 	 appendix e: group condition consent form ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! group condition consent form the impact of visiting dog programs in seniors social support i. who is conducting the study? principal investigator: dr. colin reid, ubc, - - , colin.reid@ubc.ca co-investigator: lindsay burton, ubc, - - , l.burton@alumni.ubc.ca masters student in the department of health and exercise sciences this research is for a graduate degree and will be publish as part of a master’s thesis, which is a public document available on the internet via circle. this research will also be used for publication in journal articles. ii. why should you take part in this study? you are being invited to take part in this research study because we want to learn more about the role of visiting dog programs on an individual’s social support. this study will help us learn more about dogs’ roles in social interactions and their potential use in health promotion interventions. individuals who are eligible for this study: • not allergic to dogs • unafraid of dogs • not currently visited by dogs. iii. what happens to you in the study? if you decide to take part in this research study, here are the procedures we will follow: you will be asked to fill out a questionnaire three times, before and after the dog visitation sessions, and six weeks after the dog visitation sessions end. the questionnaire takes no more than minutes to fill out. during the study you will be asked to participate in group dog-visiting sessions of up to minutes approximately once a week with five other participants. during these visits you will be asked questions by the co-investigator which will be recorded by an audio device. ubc okanagan school of health and exercise sciences 	 	 	 ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! six weeks following the dog visitation sessions, you will be asked to participate in a focus group, which will take approximately one hour. the purpose of the focus group is to gain your thoughts and reflections of the dog visitations. the focus group will be conducted with approximately five participants. focus group sessions will be recorded on an audio device and facilitated by the co-investigator. affirmation of consent will be collected before the focus group sessions begin. to ensure confidentiality digital audio recordings will be accessible only by the principal and co-investigator. files will be stored for five years after publication on a secure computer and then deleted. the total time commitment for this project is up to hours over months. iv. study results the results of this study will be reported in a graduate thesis and may also be published in journal articles. a report of the research findings will be made available to all participants. v. potential risks of the study we do not think there is anything in this study that could harm you. there are health risks associated with pet allergies, therefore if you are allergic to dogs you will be ineligible to participate in the study. the visitation dog has been specially selected to avoid any health risks. the dog has been specially trained not to jump up on people, to lean on people, or to show any signs of aggression. the dog is also carefully monitored for cleanliness and health. the co- investigator is a certified dog handler and is trained to minimize risks to both the participants and the dog. following the study there is a risk of sadness from the termination of dog visitation sessions. to address this risk, following the study, all participates will be given the contact information of a local dog visitation program such as st. john ambulance therapy dogs. vi. what are the benefits of participating? there are many ways in which this study may benefit you. individuals who participate in visiting dog programs have experienced reductions in depression symptoms, loneliness, and stress. other benefits include an increase in overall well-being, self-rated health, and enhanced socialization. 	 ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! vii. how will your privacy be maintained? your confidentiality will be respected. information that discloses your identity will not be released without your consent unless required by law. all data will be stored on a secure computer only accessible by the principal and co-investigator. files will be stored for five years after publication then deleted. information linked to the identity of participants will not be included in any publications, masters thesis or journal publications. due to the nature of focus groups and group sessions, confidentially is limited. all participants are encouraged to respect the privacy of other group members and, to this end, not disclose what is discussed and done with non-participants. viii. contact for information about the study if you have any questions or concerns about what we are asking of you, please contact the study co-investigator. contact names and telephone numbers are listed at the top of the first page of this form. ix. who can you contact if you have complaints or concerns about the study? if you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the research participant complaint line in the ubc office of research ethics toll free at - - - or the ubc okanagan research services office at - - . it is also possible to contact the research complaint line by email (rsil@ors.ubc.ca ). you may also contact the chair of the interior health research ethics board at - - or via email at researchethics@interiorhealth.ca. 	 ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! x. participant consent and signature page taking part in this study is entirely up to you. you have the right to refuse to participate in this study. if you decide to take part, you may choose to pull out of the study at any time without giving a reason and without any negative impact on you. • your signature below indicates that you have received a copy of this consent form for your own records. • your signature indicates that you consent to participate in this study. • your signature indicates that you consent to being recorded. ____________________________________________________ participant signature date ____________________________________________________ printed name of the participant signing above 	 appendix f: demographic questionnaire ! thank you for taking the time to complete this survey. the data collected will be analyzed in aggregate and no individual information will be used. ! ! ubc okanagan school of health and exercise sciences ! thank you for choosing to participate in this study. please complete this one page questionnaire to the best of your abilities. what is your gender? m or f what is your date of birth? _____ what is the highest level of education you have completed? o some high school o high school graduate o some college o trade/technical/vocational training o college graduate o some postgraduate work o post graduate degree what was your main occupation? ____________________ what is your marital status? o married o divorced o widowed o single, never married o common law do you have any children or grandchildren? yes or no if yes, how many? children ____ grandchildren___ how long have you lived in this facility? _____ 	 appendix g: multidimensional scale of perceived social support ! ! ! ! ubc okanagan school of health and exercise sciences ! ! we are interested in how you feel about the following statements. please read each statement carefully and indicate how you feel about each statement. this document contains pages. circle the “ ” if you very strongly disagree circle the “ ” if you strongly disagree circle the “ ” if you mildly disagree circle the “ ” if you are neutral circle the “ ” if you mildly agree circle the “ ” if you strongly agree circle the “ ” if you very strongly agree there is a special person who is around when i am in need. there is a special person with whom i can share my joys and sorrows. my family really tries to help me. i get the emotional help and support i need from my family. i have a special person who is a real source of comfort to me. my friends really try to help me. 	 ! ! ! ! ubc okanagan school of health and exercise sciences ! ! circle the “ ” if you very strongly disagree circle the “ ” if you strongly disagree circle the “ ” if you mildly disagree circle the “ ” if you are neutral circle the “ ” if you mildly agree circle the “ ” if you strongly agree circle the “ ” if you very strongly agree i can count on my friends when things go wrong. i can talk about my problems with my family. i have friends with whom i can share my joys and sorrows. there is a special person in my life who cares about my feelings. my family is willing to help me make decisions. i can talk about my problems with my friends. thank you for taking the time to complete the survey. the data collected will be analyzed in aggregate and no individual information will be used. 	 	 	 appendix h: semi-structured interview questions . how do you feel today? . what would you like to do with the dog today? . what do you enjoy about visiting with the dog? . what do you enjoy most about these visits, the dog or the handler? . did you have pets before moving into this facility? . do you feel more approachable when with the visiting dog? . have you found yourself interacting with anyone new since you started this program? 	 	 	 appendix i: guest consent form version( . :( (june( ! ! guest consent form the impact of visiting dog programs in seniors social support i. who is conducting the study? principal investigator: dr. colin reid, ubc, - - , colin.reid@ubc.ca co-investigator: lindsay burton, ubc, - - , l.burton@alumni.ubc.ca masters student in the department of health and exercise sciences this research is for a graduate degree and will be publish as part of a thesis, which is a public document available on the internet via circle. this research will also be used for publication in journal articles. ii. participating in this study you have been invited by a participant to join a dog visitation session as a guest. we are conducting this research study because we want to learn more about how the role of visiting dog programs on an individual’s social support. this study will help us learn more about dogs’ roles in social interactions and their potential use in health promotion interventions. your role in this study is as a guest to the participant who invited you. throughout the session questions will be asked to the participant and audio recorded. you will not be asked any questions beyond those that take place in causal conversation with a stranger (e.g., how are you today?). to ensure confidentiality audio recordings will be accessible only by the principal and co- investigator. files will be stored for five years after publication on a secure computer and then deleted. are there any risks associated with participating? we do not think there is anything in this study that could harm you. there are health risks associated with pet allergies, therefore if you are allergic to dogs we ask you reconsider joining us in the study. the visitation dog has been specially selected to avoid any health risks. the dog has been specially trained not to jump up on people, to lean on people, or to show any signs of aggression. the dog is also carefully monitored for cleanliness and health. the co-investigator is a certified dog handler and is trained to minimize risks to both the participants and the dog. are there any benefits associated with participating? visiting dog programs have shown benefits in different populations in various settings. very generally, we expect you will experience joy from participating as a guest in our study. ubc okanagan school of health and exercise sciences 	 version( . :( (june( ! ! iii. how will your privacy be maintained? your confidentiality will be respected. information that discloses your identity will not be released without your consent unless required by law. all data will be stored on a secure computer only accessible by the principal and co-investigator. files will be stored for five years after publication and then deleted. due to the nature of group sessions, confidentially is limited. all participants are encouraged to respect the privacy of other participants and, to this end, not disclose what is discussed with non- participants. iv. contact for information about the study if you have any questions or concerns about what we are asking of you, please contact the study co-investigator. contact names and telephone numbers are listed at the top of the first page of this form. v. who can you contact if you have complaints or concerns about the study? if you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the research participant complaint line in the ubc office of research ethics toll free at - - - or the ubc okanagan research services office at - - . it is also possible to contact the research complaint line by email (rsil@ors.ubc.ca ). you may also contact the chair of the interior health research ethics board at - - or via email at researchethics@interiorhealth.ca. 	 version( . :( (june( ! ! vi. participant consent and signature page taking part in this study is entirely up to you. you have the right to refuse to participate in this study. if you decide to take part, you may choose to pull out of the study at any time without giving a reason and without any negative impact on you. • your signature below indicates that you have received a copy of this consent form for your own records. • your signature indicates that you consent to participate in this study. • your signature indicates that you consent to being recorded. ____________________________________________________ participant signature date ____________________________________________________ printed name of the participant signing above ! 	 	 	 appendix j: focus group consent form ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! focus group consent form the impact of visiting dog programs in seniors social support i. who is conducting the study? principal investigator: dr. colin reid, ubc, - - , colin.reid@ubc.ca co-investigator: lindsay burton, ubc, - - , l.burton@alumni.ubc.ca master’s student in the school of health and exercise sciences this research is for a graduate degree and will be publish as part of a master’s thesis, which is a public document available on the internet via circle. this research will also be used for publication in journal articles. ii. why should you continue to take part in this study? you participated in a visiting dog program that was part of a study designed to help us learn more about dogs’ role in social interactions and their potential use in health promotion interventions. your continued participation is an important component for understanding any long-term effects of the program and to ascertain your expert option and reflections on the visiting dog program. iii. what happens to you in the focus group? you are being asked to participate in a focus group, which will take approximately one hour. the purpose of the focus group is to gain your thoughts and reflections of the dog visitations. the focus group will be conducted with approximately five participants. focus group sessions will be recorded on an audio device and facilitated by the co- investigator. you will also be asked to fill out a questionnaire at the start of the focus group that will take no more than ten minutes to fill out. focus group sessions will take no more than one hour to complete. to ensure confidentiality digital audio recordings will only be accessible by the principal and co-investigator. files will be stored for five years after publication on a secure computer then deleted. iv. study results the results of this study will be reported in a master’s thesis and may also be published in journal articles. ubc okanagan school of health and exercise sciences 	 ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! a report of the research findings will be made available to all participants. v. potential risks of the study we do not think there is anything in this study that could harm you. however, due to the nature of focus groups, we cannot ensure confidentiality. if you choose to continue participation we ask you do not disclose what is discussed outside of the focus group. vi. what are the benefits of participating? continued participation in the study may benefit you by sharing the collective experience of the visiting dog program with fellow participants. participants of focus groups have also experienced empowerment as valued experts on the topic discussed. vii. how will your privacy be maintained? your confidentiality will be respected. information that discloses your identity will not be released without your consent unless required by law. all data will be stored on a secure computer accessible only by the principal and co-investigator. files will be stored for five years after publication and then deleted. information linked to the identity of participants will not be included in any publications, master’s theses, or journal publications. due to the nature of focus groups and group sessions, confidentially is limited. all participants are encouraged to respect the privacy of other group members and, to this end, not disclose what is discussed with non-participants. viii. contact for information about the study if you have any questions or concerns about what we are asking of you, please contact the study co-investigator. contact names and telephone numbers are listed at the top of the first page of this form. ix. who can you contact if you have complaints or concerns about the study? if you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the research participant complaint line in the ubc office of research ethics toll free at - - - or the ubc okanagan research services office at - - . it is also possible to contact the research complaint line by email (rsil@ors.ubc.ca ). you may also contact the chair of the interior health research ethics board at - - or via email at researchethics@interiorhealth.ca. 	 ! version! . :! !june! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!page! !of! ! ! x. participant consent and signature page taking part in this study is entirely up to you. you have the right to refuse to participate in this study. if you decide to take part, you may choose to pull out of the study at any time without giving a reason and without any negative impact on you. • your signature below indicates that you have received a copy of this consent form for your own records. • your signature indicates that you consent to participate in this study. • your signature indicates that you consent to being recorded. ____________________________________________________ participant signature date ____________________________________________________ printed name of the participant signing above 	ubc_ _september_burton_lindsay 	ubc_ _september_burton_lindsay. 	appendix b 	ubc_ _september_burton_lindsay. ndt_ _optimal-management-of-alzheimer-s-disease--clinical-guidelin © haberstroh et al, publisher and licensee dove medical press ltd. this is an open access article which permits unrestricted noncommercial use, provided the original work is properly cited. neuropsychiatric disease and treatment : – neuropsychiatric disease and treatment r e v i e w open access to scientific and medical research open access full text article dovepress submit your manuscript | www.dovepress.com dovepress optimal management of alzheimer’s disease patients: clinical guidelines and family advice julia haberstroh harald hampel johannes pantel department of psychiatry, psychosomatic medicine & psychotherapy, johann wolfgang goethe-university, frankfurt, a.m., germany correspondence: johannes pantel department of psychiatry, psychosomatic medicine & psychotherapy, johann wolfgang goethe-university, heinrich-hoffmann-str. , d- frankfurt a.m., germany tel + fax + email johannes.pantel@kgu.de abstract: family members provide most of the patient care and administer most of the treatments to patients with alzheimer’s disease (ad). family caregivers have an important impact on clini- cal outcomes, such as quality of life (qol). as a consequence of this service, family caregivers suffer high rates of psychological and physical illness as well as social and financial burdens. hence, it is important to involve family caregivers in multimodal treatment settings and provide interventions that are both suitable and specifically tailored to their needs. in recent years, sev- eral clinical guidelines have been presented worldwide for evidence-based treatment of ad and other forms of dementia. most of these guidelines have considered family advice as integral to the optimal clinical management of ad. this article reviews current and internationally relevant guidelines with emphasis on recommendations concerning family advice. keywords: caregivers, management, quality of life, treatment introduction alzheimer’s disease (ad) is the most prevalent cause of dementia encountered in older patients. late-stage clinical ad can result in substantial clinical burden and a reduction of quality of life (qol) for the patients and family caregivers. there are a number of effec- tive nonpharmacological and symptomatic pharmacological approaches to treat ad. all of those approaches, however, cannot prevent, cure or stop the progression of the disease. , therefore, the specific goals of current treatments are to preserve cognitive and functional ability, minimize behavioral disturbances, slow disease progression, ease the burdens on the patient and family, and maintain their qol through clinical management. in optimal management of ad patients, both pharmacological and nonpharmacological treatments must be considered necessary and adapted to meet the individual needs of each ad patient and their family caregivers. , in this review, we focus on nonpharmacological approaches that address family advice as part of an optimal clinical management of ad. family caregivers provide most of the patient care and administer most of the treatments used for patients with ad. they have an important impact on the qol of dementia patients. , further, they suffer high rates of psychological and physical illness, as well as carrying many of the social and financial consequences. hence, it is important to involve family caregivers in multimodal treatment settings and provide interventions that are directly addressed to the family caregivers (eg, education programs, support groups, and counseling). in recent years, several clinical guidelines for evidence-based treatment of ad and other forms of dementia have been published worldwide. here, we review current and internationally relevant guidelines with respect to the given recommendations concerning family advice. n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : haberstroh et al dovepress submit your manuscript | www.dovepress.com dovepress published and internationally accepted dementia guidelines with respect to the given recommendations concerning family advice. american psychiatric association (apa) purpose according to the authors, the purpose of this guideline was to assist the psychiatrist in caring for a dementia patient. in particular, the authors sought to summarize data in order to inform the care of patients with ad and other forms of dementia, including vascular dementia, dementia with parkinson’s disease, dementia with lewy bodies, and the frontotemporal dementia spectrum disorders. contents the apa practice guideline covered the pharmacological and nonpharmacological treatment of dementia patients as well as the support for family members and other caregivers. synopsis of treatment recommendations the guideline summarized treatment recommendations for cognitive symptoms, psychosis and agitation, depression, and sleep disturbances. the authors discussed psychiatric management, specific psychotherapies and other psychoso- cial treatments and provided corresponding recommenda- tions. in addition, the authors critically considered special concerns such as somatic treatments for elderly patients and dementia patients, as well as special issues for long-term care. in addition, the authors proposed an extensive guide to develop and implement a stage-specific treatment plan for the individual patient and discussed how specific clinical features influence the treatment plan in great detail. method clinical guidelines were identified via a medline search using mesh headings, alzheimer disease and clinical guidelines. the alternative terms, practice guidelines, treatment guidelines, consensus guidelines, consensus statement, practice parameter, and practice recommenda- tion were also searched in conjunction with the mesh term, alzheimer disease. additionally, medline was searched using the term dementia and clinical guide- lines or practice guidelines. all searches were limited to articles published in english within the last five years. the reference lists of articles thus identif ied were searched manually to identify additional articles of interest. a total of unique articles were identif ied. based on these articles, four internationally relevant clinical guidelines for the treatment of patients with ad were identif ied (see table ). for this review, we def ined clinical guidelines as statements that have been systematically developed and which aim to assist clinicians in making decisions about treatment for specif ic conditions. clinical guidelines are linked to evidence and are meant to facilitate good medical practice. clinical guidelines for the treatment of patients with ad the principal benefit of guidelines is to improve the quality of clinical care by providing a robust management strategy for patients. guidelines represent an option for improving the overall quality of clinical care; nevertheless, they need to be interpreted and applied in a way that is clinically appropriate. below, we analyze and discuss four recently table internationally relevant guidelines reference country of origin editor target group contents recommendation of family advice usa american psychiatric association (apa) psychiatrists treatment of people with dementia; support for caregivers yes uk nice and scie general practitioners, nurses, geriatricians, psychiatrists, social workers, care home managers and care staff, commissioners, managers and coordinators of health and social care identification, treatment and care of people with dementia; support for caregivers yes usa american academy of neurology (aan) neurologists; other clinicians who manage patients with dementia treatment of people with dementia; support for caregivers yes eu european federation of neurological societies (efns) clinical neurologists; geriatricians; psychiatrists; other specialist physicians responsible for the care of patients with dementia identification, treatment and care of people with dementia; support for caregivers yes n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : clinical management of alzheimer’s diseasedovepress submit your manuscript | www.dovepress.com dovepress the authors of the apa practice guideline declared that the guideline is intended to be inclusive and to cover the range of necessary treatments that might be used by a physician or consultant who provides or coordinates the overall care of the dementia patient. they indicated that the psychiatrist caring for a dementia patient should consider, but need not be limited to, the treatments recommended in the practice guideline. recommendations concerning family advice throughout the entire guideline, the authors emphasized the relevance of providing critical support for family members and other caregivers and making referrals to social, legal, and other community resources. the guideline also notably highlighted the role of family advice in optimal psychiatric management. the recommended interventions include edu- cating patients and families about the illness, the course of treatment, and sources of additional care and support (eg, sup- port groups, respite care, nursing homes, and other long-term care facilities). other tasks pertaining to the recommended interventions included advising patients and their families of the need for financial and legal planning due to the patient’s eventual incapacity (eg, power of attorney for medical and financial decisions, an up-to-date will, and the cost of long- term care), and addressing the imminent or eventual need for driving cessation with patients and their families due to the increased risk of vehicular accidents even in mild dementia. additionally, the guideline denoted the necessity of monitor- ing the signs of caregiver distress, and the need to support families during decisions about institutionalization. national institute for clinical excellence (nice) – social care institute for excellence (scie) purpose the nice-scie guideline’s specif ic aims were f irstly to evaluate the role of specific pharmacological agents, psychological and psychosocial interventions in the treatment and management of dementia, and secondarily to evalu- ate the role of specific services and systems for providing those services in the treatment and management of dementia. the guideline recommended the integration of both of these goals to provide best practice advice on the care of individuals with a diagnosis of dementia through the different phases of illness, including the initiation of treatment, the treatment of acute episodes and the promotion of well-being. in addition, the authors considered the economic implications of various interventions for dementia. contents the nice-scie guideline covered the assessment and diagnosis of dementia, as well as pharmacological and nonpharmacological treatment and care of dementia patients. the guideline also indicated that support should be provided for family caregivers within primary and secondary health- care, and social care. synopsis of treatment recommendations the guideline presented a range of recommendations on pharmacological and nonpharmacological treatments for cognitive symptoms and maintenance of functioning, as well as recommendations regarding treatments for noncog- nitive dementia symptoms. some recommendations were given for educational interventions in dementia patients. the authors critically discussed the role of dementia care mapping (dcm); and recommended that further systematic research be conducted using outcome measures of quality of life other than dcm, in order to adequately evaluate its impact as a vehicle of change. the authors highlighted the impact of staff training and interventions on caregivers of dementia patients and the guideline proposed require- ments for review and evaluation of care plans, adherence to ethical principles and assessment of capacity to make decisions. the authors provided recommendations regard- ing how to recognize and respond to suspected abuse and neglect, how to approach the topic of workforce develop- ment, and how to design the environment to be supportive and therapeutic. also identified was the need for acute in- patient hospital services to address the specific problems of dementia patients. the guideline also emphasized the need for care to be person-centered and the authors recommended a coordinated and integrated approach between health and social care services to treat and care for dementia patients and their caregivers. family advice the guideline emphasized the imperative in dementia care to consider the needs of caregivers, and to consider ways of sup- porting and enhancing the efforts of caregivers on behalf of the dementia patient. the authors emphasized that dementia patients are enabled to live longer in their own communities when caregivers are well supported and well informed. specifically, the guideline recommended educating the family caregivers with written information about the signs and symptoms of dementia, the course and prognosis of the condition, treatment options, local care and support services, and the types of support groups available. it also clarified the n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : haberstroh et al dovepress submit your manuscript | www.dovepress.com dovepress value of helping the family know where sources of financial and legal advice are located, how they may benefit from advo- cacy, what the relevant medico-legal issues are (ie, such as driving cessation), and where other local information sources, including libraries and voluntary organizations, are located. the authors recommended that there be continuous assess- ment of family caregivers´ needs in parallel to the design of a care plan for family caregivers of dementia patients. this may consist of multiple components including: individual or group psychoeducation, peer-support groups with other caregivers, support and information by telephone and through the internet, training courses about dementia, services, com- munication and problem solving skills in the care of dementia patients, as well as involvement of other family members and the primary caregiver in family meetings. additionally, the authors proposed some recommendations for practical support and services such as, day care, day- and night-sitting, adult placement, short-term and/or overnight residential care, and transport services. american academy of neurology (aan) purpose the objective of this guideline was to define and investigate key issues in the management of dementia and to make litera- ture based treatment recommendations. pharmacologic and nonpharmacologic treatments for dementia management were addressed in terms of scientifically sound, clinically relevant practice parameters to aid in the practice of neurology. contents the aan practice parameter “management of dementia” covered the treatment of dementia patients and the sup- port that should be provided for family members and other caregivers. synopsis of treatment recommendations the aan practice parameter addressed four clinically relevant questions regarding the management of dementia: does pharmacotherapy for cognitive symptoms improve outcomes in dementia patients compared with no therapy? does pharmacotherapy for noncognitive symptoms improve outcomes in dementia patients compared with no therapy? do educational interventions improve outcomes in patients and/or caregivers of dementia patients compared with no such interventions? do nonpharmacologic interventions other than education improve outcomes in patients and/or caregivers of dementia patients compared with no such interventions? the authors presented analysis of evidence and practice recommendations for all named issues. very briefly, the guideline put forth three additional issues that were evaluated to be important: cooperation amongst neurologists, other cli- nicians, and community care providers; the impact of differ- ent economic models of care; and assessments for predicting decision-making capacity for dementia patients. with respect to these issues, the guideline stated more research is needed to derive more specific recommendations. family advice the guideline recommended that specific nonpharmacologi- cal interventions should be offered to family caregivers to improve caregiver satisfaction and to delay the time to nursing home placement for the patient with ad. the recommended interventions included education (eg, comprehensive, psy- choeducational caregiver training, short-term programs directed toward educating family caregivers about ad, and intensive long-term education), support (eg, such as sup- port groups, telephone support, and other support services when available), and respite care (eg, such as adult day care for patients and other respite services). additionally, the guideline suggested the use of computer networks to provide education and support to caregivers. moreover, the authors stressed that more research is recommended to develop ways to match family caregiver interventions to the specific needs of family caregivers. european federation of neurological societies (efns) purpose the international efns guideline on dementia aimed to pres- ent a peer-reviewed evidence-based statement to guide the practice of clinical neurologists, geriatricians, psychiatrists, and other specialist physicians responsible for the care of dementia patients. contents the efns guideline covered the identification and phar- macological treatment of dementia patients and briefly addressed the support that is necessary to be provided for family members and other caregivers. synopsis of treatment recommendations the main emphasis of this guideline was on recommenda- tions for pharmacological treatment. it offered recommenda- tions on pharmacological treatments for cognitive symptoms and maintenance of functioning, as well as recommended n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : clinical management of alzheimer’s diseasedovepress submit your manuscript | www.dovepress.com dovepress treatments for noncognitive symptoms. the authors purposely limited their guideline to pharmacological treatments, and so many other important aspects of the care for dementia patients were intentionally not covered. nevertheless, a few recommendations were given with respect to counseling and support for family caregivers, relevant legal issues, problems with driving, and the collaboration of specialist physicians with other health care professionals. family advice the authors emphasized the relevance of providing counsel- ing and support for family members and other caregivers; however, they did not offer explicit or specific recommenda- tions for treatment or other forms of intervention. the authors indicated that education and information, along with support groups for both patients and family caregivers, are all helpful with regard to the treatment of behavioral and psychological symptoms in dementia. they also suggested that specialist physicians assess family caregiver distress and needs at regu- lar intervals throughout the course of the disease. additional guidelines in the last five years, some additional guidelines have been published (see table ). some of those guidelines have a priori been developed as national guidelines and others focus only on pharmacological treatments of dementia and are therefore not relevant for this article. nevertheless, these guidelines are valuable for the further enhancement of inter- national guidelines, and in particular, for the improvement of national clinical management of ad. these other guidelines are also statements that have been systematically developed, linked to evidence, and that were meant to facilitate good medical practice. therefore, they can be classified as clinical guidelines. link to evidence all the guidelines considered in this review prove to be linked to empirical evidence. regarding the four guidelines considered relevant to this article, we find that the guideline development process was traceable and that certain levels of evidence for the given recommendations have been defined. however, we also note that several guidelines specifically reviewed herein did not consistently correlate each of the provided recommendations with a statement of the strength of the underlying evidence. for the aan and efns guidelines, the level of evidence is readily identif iable since it is always mentioned in combination with the given recommendation. in particular, the aan guideline defined three levels of evidence: standard principle for patient management that reflects a high degree of clinical certainty, guideline recommendation for patient management that reflects moderate clinical certainty, practice option strategy for patient management for which the clinical utility is uncertain. the efns guideline graded the recommendations according to the strength of evidence, using the definitions given in the efns guidance: level a rating established as useful/predictive or not useful/predictive, level b rating established as probably useful/predictive or not useful/predictive, level c rating established as possibly useful/predictive or not useful/predictive. the apa guideline began with an executive summary in which treatment recommendations were coded according to three levels of degree of clinical evidence: [i] recommended with substantial clinical confidence, [ii] recommended with moderate clinical confidence, [iii] may be recommended on the basis of individual circumstances. to identify the strength of the underlying evidence of a recommendation given in the associated sections of the apa guideline, one can examine the listing of cited references. each reference was followed by a letter code in brackets that indicated the nature of the supporting evidence. the guideline allows the reader to appreciate the evidence base behind the guideline recommendations and the weight that should be given to each recommendation. the initial execu- tive summary provided a clear overview about the levels of evidence. the nice-scie guideline used four components (study, design/quality, consistency and directness) to produce an table additional guidelines selected reference country of origin editor canada canadian medical association (cma) germany dgppn and dgn usa acp and aafp brazil brazilian academy of neurology italy italian association of psychogeriatrics n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : haberstroh et al dovepress submit your manuscript | www.dovepress.com dovepress overall quality of evidence grade. the following definitions were used: high further research is very unlikely to change our confidence in the estimate of the effect, moderate further research is likely to have an important impact on our confidence in the estimate of the effect, and may change the estimate, low further research is very likely to have an impor- tant impact on our confidence in the estimate of the effect, and is likely to change the estimate, very low any estimate of effect is very uncertain. , in this guideline, each recommendation was followed by a referencing note; for example, ‘for the evidence, see section . ’. in this section, the reader finds a factual, well-supported rationale for the recommendation. to prove the underlying evidence of a citation, the reader can further search for the respective profile table in an appendix, which is published as a substantive vol- ume with accompanying cd-rom. this cd-rom includes the full results of evidence assembly and synthesis, including search details, pharmacological interventions, and evidence tables based on meta-analyses and narrative summaries for psychological interventions (eg, cognitive stimulation, life review, light therapy). however, there is no such information given for recommendations concerning family advice. hence, the strength of the underlying evidence for most of the recom- mendations relevant for this article cannot be derived out of the nice-scie guideline. family advice in the context of optimal clinical management all of the reviewed guidelines presented the consistent demand for interventions that include family advice. further, at least three of the four guidelines underscored that family advice has potential to ease the burdens on the patient and family and to increase their qol. – in contrast to the other guidelines, the efns guidelines scarcely mentioned family advice, mainly due to the scope and limitations described therein. family advice was considered more or less compre- hensively in the aan guideline and was given high attention in the apa and nice-scie guidelines. the various guidelines recommended similar interven- tions as part of an optimal clinical management of ad; how- ever, they did not agree on the specific strategies of advising families. this difference makes some sense in light of the fact that the guidelines target diverse professional groups. besides the problem of different target groups, another explanation for this difference is that family advice research has limited randomized controlled trial evidence for the specific effects of interventions. for example, the authors of the guidelines had to extrapolate many recommendations from controlled or even uncontrolled clinical trials with small samples. therefore, we see that the authors of the guidelines often have had to work with uncertain data; and even when the data are certain, recommendations for or against interven- tions will involve subjective value judgments. there appears to be susceptibility to bias in the guidelines that is based on the nature of evidence, subjective clinical opinion, and level or nature of clinical experience in the composition of the guideline development group. this susceptibility for bias may confound the validity of guidelines. , , although the methodological quality, design and implementation of family caregiver intervention studies continues to improve over time, drawing comparisons between studies and making practi- cal applications remains difficult due to the use of a wide range of different outcome domains and measures. , , for example, it is often difficult to discern whether two interven- tion programs share common features or if different outcomes are comparable. the problems mentioned above are not to suggest the guidelines are ungrounded, but rather provide impetus for further high quality research. for example, there is a critical need for well designed, randomized, controlled trials of potential interventions that examine family advice specifically, and that standardize the use of outcome domains and measures. in order to provide a systematic basis for research on those interventions, the following sections survey the recommended interventions that include family advice with respect to their current level of evidence. we derived five types of interventions: education, counseling, assessment of family caregiver distress and needs, practical support and services, and psychosocial interventions for dementia patients. if available, the levels of evidence documented in each guideline, are integrated into the listed recommenda- tions. in terms of the nice-scie guideline, only the levels of evidence for the recommendations concerning psychological interventions can be considered. further recommendations of the nice-scie guideline will be listed even though no infor- mation about the levels of evidence has been provided. as mentioned above, the four guidelines have used differ- ent definitions for the levels of evidence. to simplify matters, we suggest the following descriptors for levels of evidence, which are integrated into three levels (see table ): level substantial clinical certainty, level moderate clinical certainty, level uncertain clinical utility. n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : clinical management of alzheimer’s diseasedovepress submit your manuscript | www.dovepress.com dovepress the original classifications of the guidelines for the five types of interventions that include family advice can be found in table . we do not perform a meta-analysis, but present the recommendations and the classified levels of evidence, if available, in a narrative way for particular types of interven- tions that include family advice. education all guidelines recommended educational interventions for families that can be conducted for individuals or groups. the classified levels of evidence differ from level to level . , , according to the apa ( ) and nice-scie ( ) guideline, the following contents should be included in edu- cational interventions: information about the illness, available treatments and medication management, local care and sup- port services, basic principles of care, communication and problem solving in the care of dementia patients. education can be provided via psychoeducation or skills training support groups, in which caregivers may learn from one another; or conjunctively via written information and telephone and internet-based systems for additional provision of information and support. – furthermore, it may be useful to take into account basic cultural and gender differences in approaches to caring when designing educational interven- tions for family caregivers. , however, it is worth noting that when educational interventions are introduced at an early stage after establishment of the diagnosis, those who provide treatment for family caregivers of dementia patients should be aware of the possibility that education about dementia may sometimes have an adverse effect on a caregiver’s anxiety. the aan guideline differentiated the effects of short- and long-term programs. short-term programs directed toward educating family caregivers about ad should be offered to improve caregiver satisfaction; whereas, intensive long-term education and support services should be offered to care- givers of patients with ad to delay time to nursing home placement. the nice-scie guideline highlighted that information is the most useful when dementia patients were involved in the educational process. therefore, the authors recommended that care providers consider involving dementia patients in psychoeducation, support, and other meetings for family caregivers. table integrated levels of evidence integrated for this article apa nice efns aan level : substantial clinical certainty level [i] evidence grade [high] [level a rating] level [standard] level : moderate clinical certainty level [ii] evidence grade [moderate] [level b rating] level [guideline] level : uncertain clinical utility level [iii] evidence grade [low] and evidence grade [very low] [level c rating] level [practice option] table levels of evidence for interventions that include family advice intervention apa nice efns aan education level [i] recommended; no access to evidence rating [level b rating] level [guideline] counseling level [ii] recommended; no access to evidence rating [level b rating] level [guideline] assessment of caregiver distress and needs recommended; no access to evidence rating recommended; no access to evidence rating [level c rating] no recommendation; call for research practical support and services recommended; no access to evidence rating recommended; no access to evidence rating level [practice options] psychosocial interventions for dementia patients • behavioral approaches level [ii] recommended; no access to evidence rating level [guideline] • stimulation-oriented treatments level [ii] evidence grade [moderate] level [guideline] • reminiscence and validation therapy level [iii] evidence grade [moderate] no recommendation n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : haberstroh et al dovepress submit your manuscript | www.dovepress.com dovepress counseling all guidelines recommended counseling interventions for families. the apa guideline classified the evidence for those interventions as level ; the efns classified it as level . , the aan guideline combined recommendations pertaining to counseling interventions and educative interventions; and although these constructs seem related and can overlap, it is more tedious to distinguish the recommendations that are unique to counseling due to the lack of separation of the different types of interventions. as mentioned above, the evidence for education, which again includes counseling, is classified as level . although counseling includes the provision of informa- tion, it is more than education alone. counseling also serves to provide emotional support and to help people make their own decisions and plan their future actions. another impor- tant aspect to counseling as part of optimal clinical manage- ment pertains to referrals for financial and legal advice due to the patient’s eventual incapacity (eg, power of attorney for medical and financial decisions, an up-to-date will, and financial planning for the cost of long-term care). , fur- thermore, patients and families need to be informed about the potential and inevitable safety issues. for example, it is not uncommon for accidents to occur due to forgetfulness, such as fires during the cooking of meals; and there is increased risk of vehicular accidents, even in mild dementia. as such, driving cessation is an inevitable event for which patients with ad and their family caregivers must be prepared. , in addition, the apa guideline recommended counseling for families during decisions about institutionalization. the efns guideline provided recommendations pertaining to legal issues and driving, but did not specify legal and safety issues as essential information for counseling. the aan guideline mentioned neither financial and legal issues nor driving and safety issues; and it did not offer recommenda- tions with regard to what the specific tasks of counseling should be. the american academy of neurology published a specific guideline concerning the risk of driving in patients with ad. however, the need to advise the family about the safety issues related to driving was also not clearly covered in this specific guideline. assessment of caregiver distress and needs the nice-scie, apa and efns guidelines identified the necessity of assessing caregiver distress and needs at regular intervals throughout the course of the disease. the efns guideline was the only guideline that we found documented a level of evidence for this recommendation at level . additionally, the nice-scie guideline recommended that assessing distress and identifying needs of family care- givers are important to the design of a care plan for family caregivers of dementia patients. the apa guideline further recommended some interven- tions that have been developed to ease the distress associated with long-term care-giving. these interventions include psy- choeducational programs for improved emotional coping with frustration or depression, psychotherapy focused on alleviating symptoms of depression and anxiety, exercise interventions for caregivers, workshops in stress management techniques, and support groups that combine education with support. we did not find any level of evidence documented for those recommenda- tions, but the cited studies imply an evidence level of . the aan guideline did not explicitly recommend the assessment of caregivers’ distress and needs, but called for research to develop ways to match caregiver interventions to the specific needs of caregivers. practical support and services an additional component of family advice is the information about sources of practical support and services. all guidelines recommended various services to be introduced to families, such as respite services, nursing homes, other long-term care facilities, day care, day- and night-sitting services, and short-term and/or overnight residential care. the aan guideline classified the evidence for practical support and respite services as level . based on the statements of the apa guideline, there is mixed evidence for practical support and services aside from a clear level evidence statement for the recommendation that care should be organized to meet the needs of patients. psychosocial interventions for dementia patients three of the four considered guidelines recommended some psychosocial interventions that are tangent to family advice, as the organization or implementation of these interventions often falls on the family caregivers. – all of the reviewed guidelines concluded that there is limited evidence (from randomized controlled trials) regarding the specific effects of psychosocial interventions on dementia patients. neverthe- less, the reviewed guidelines have provided recommendations for interventions. behavioral approaches, and stimulation- oriented treatments (eg, recreational activity, art therapy, music therapy, and pet therapy) are recommended with n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : clinical management of alzheimer’s diseasedovepress submit your manuscript | www.dovepress.com dovepress level evidence. – furthermore, supportive psychotherapy is recommended to address issues of loss in the early stages (level evidence). cognition-oriented treatments, such as reality orientation, cognitive retraining, and skills training focused on specific cognitive deficits, are not recommended since they are unlikely to have a persistent benefit and have been associated with frustration in some patients. , the levels of evidence for reminiscence and validation therapy are not consistently classified in the guidelines (nice-scie: level evidence; apa: level evidence). , potential benefits and limitations of clinical guidelines the principal benefit of guidelines is to provide a robust man- agement strategy for patients, and thus improve the quality and consistency of care received by patients. with evidence- based guidelines, the quality of clinical decisions can be improved, and authoritative recommendations can reassure practitioners about the appropriateness of their treatment policies. however, guidelines need to be interpreted and applied in a way that is clinically appropriate. awareness of a treatment’s effectiveness does not confer knowledge about how to use that treatment. good evidence can lead to bad practice if it is applied without clinical acumen or without therapeutic empathy. all of the guidelines presented herein concluded that the care of every dementia patient must be individualized to meet the unique needs of that patient and his or her family caregivers. – multidisciplinary cooperation although it can be assumed that clinical practice guidelines should improve the quality of care, it is less clear whether they actually achieve this goal in daily practice. , the majority of interventions that include family advice require special and diverse competencies that cannot be assumed for all users of a guideline. multidisciplinary cooperation is needed in order to effectively apply the evidence-based interventions recom- mended in these guidelines in the context of clinical practice. accordingly, the apa, efns, and nice-scie guidelines recommended a multidisciplinary approach in the treatment of dementia, and assumed this as a matter of course for optimal clinical management. , , however, there is a lack of evi- dence-based articles concerning this issue. as such, the aan guideline formulated recommendations for future research. according to the aan guideline, more research is needed to define the roles of various types of practitioners (eg, neurolo- gists, psychiatrists, geriatricians, primary care physicians) in the care of dementia patients. the aan guideline suggested that the benefits of an interactive care approach involving multiple practitioners, including cost-benefit assessments, must be stud- ied. furthermore, the aan guideline postulated that research leading to guidelines for the cooperation between clinicians is needed because ad is a chronic illness requiring coordinated management that can adapt over the course of the illness. the nice-scie guideline explicitly recommended strategies to improve coordination and integration of health and social care. it recommended that health and social care managers should coordinate and integrate work efforts across all agencies involved in the treatment and care of people with dementia and their family caregivers, including common agreement of written policies and procedures. furthermore, the nice-scie guideline postulated that joint planning should include local service users and family caregivers in order to highlight and address problems specific to each locality. the assignments of “care managers” and “care coordi- nators” are promising approaches to ensure the coordinated delivery of health and social care services for dementia patients. future research is needed to show how multidisci- plinary cooperation is best achieved and whether multidis- ciplinary cooperative approaches to intervention will lead to the intended improvements in treatment outcomes for patients with ad and their family caregivers. the problem of treatment implementation in published dementia caregiver intervention research, there has been a widespread failure to measure whether the implementation of treatment has been effective because there is a lack of empirical research regarding implementa- tion strategies and outcomes. the same appears to be true of the clinical guidelines. the effect of clinical guidelines on medical practice and their impact on patient care is often limited. , hence, guideline development needs to be complemented by evidence-based implementation. all considered guidelines have given evidence based recommendations, which allows for better practice than recommendations not based on scientific evidence. the nice-scie and apa guidelines provided precise definitions of recommended performance, which can improve the use of guidelines according to grol and colleagues. although the nice-scie guideline formulated pre- cise recommendations for local implementations as well as details about how the implementation can be audited, it also recommended the development of a more broadly n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : haberstroh et al dovepress submit your manuscript | www.dovepress.com dovepress based implementation strategy. none of the other research guidelines considered relevant to this article gave recom- mendations for local or national implementations and auditing of the guidelines. the apa guideline formulated recommendations for the implementation of a treatment plan, which is necessary, but not sufficient for local or national implementations. conclusion evidence-based clinical guidelines have become a major feature in health care. researchers and clinicians in many countries have established programs to summarize the evi- dence for managing ad and other dementias. according to current evidence, interventions that include family advice are an essential part of an optimal clinical management of ad. all of the considered guidelines agree on the potentially positive effects of family advice on dementia patients and their family caregivers with medium range levels of evidence. however, guideline recommendations are frequently not applied in practice. as such, many patients do not profit from evidence-based insights. practitioners need special skills in order to apply the interventions recommended in the guidelines concerning family advice. for example, skills such as leading a psychoeducational training group cannot be assumed for all types of practitioners. hence, it seems important to provide education for practitioners about how to change their clinical practice in order to take into account the recommendations given in the clinical guidelines (eg, how to successfully realize the recommendations of the guidelines in a multidisciplinary team setting). in order to address the needs of the end user of a guide- line, caregiver education materials and practical tools to manage family advice in practice should be provided to practitioners. research that addresses the clinical 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www.dovepress.com www.dovepress.com www.dovepress.com 	pub info : 	nimber of times reviewed : prevalence and correlates of use of complementary and alternative medicine in children with autism spectrum disorder in europe erica salomone * , tony charman , helen mcconachie , petra warreyn , and working group , cost action ‘enhancing the scientific study of early autism’ king’s college london, institute of psychiatry, psychology and neuroscience, department of psychology, united kingdom; erica.salomone@kcl.ac.uk king’s college london, institute of psychiatry, psychology and neuroscience, department of psychology, united kingdom; tony.charman@kcl.ac.uk institute of health and society, newcastle university, united kingdom; helen.mcconachie@newcastle.ac.uk department of experimental clinical and health psychology, ghent university, belgium; petra.warreyn@ugent.be the working group also includes: anett kaale, anett.kaale@r-bup.no (norway); bernadette rogé, roge@univ-tlse .fr and frederique bonnet-brilhaut, frederique.brilhault@univ-tours.fr (france), iris oosterling, i.oosterling@karakter.com (the netherlands), selda ozdemir, seldaozdemir@gazi.edu.tr (turkey), antonio narzisi, antonio.narzisi@inpe.unipi.it and filippo muratori f.muratori@inpe.unipi.it, (italy), joaquin fuentes, fuentes.j@telefonica.net (spain), mikael heimann mikael.heimann@liu.se, (sweden), michele noterdaeme, noterdaeme.michele@josefinum.de, christine freitag, christinemargarete.freitag@kgu.de, luise poustka, luise.poustka@zi-mannheim.de and judith sinzig, judith.sinzig@lvr.de(germany), sue fletcher-watson, sfwatson@staffmail.ed.ac.uk and jonathan green, jonathan.green@manchester.ac.uk (the uk). mailto:erica.salomone@kcl.ac.uk mailto:tony.charman@kcl.ac.uk mailto:helen.mcconachie@newcastle.ac.uk mailto:petra.warreyn@ugent.be mailto:anett.kaale@r-bup.no mailto:roge@univ-tlse .fr mailto:frederique.brilhault@univ-tours.fr mailto:i.oosterling@karakter.com mailto:seldaozdemir@gazi.edu.tr mailto:antonio.narzisi@inpe.unipi.it mailto:f.muratori@inpe.unipi.it mailto:fuentes.j@telefonica.net mailto:mikael.heimann@liu.se mailto:noterdaeme.michele@josefinum.de mailto:christinemargarete.freitag@kgu.de mailto:luise.poustka@zi-mannheim.de mailto:judith.sinzig@lvr.de mailto:sfwatson@staffmail.ed.ac.uk mailto:jonathan.green@manchester.ac.uk * correspondence should be addressed to: erica.salomone@kcl.ac.uk; + ( ) mailto:erica.salomone@kcl.ac.uk prevalence and correlates of use of complementary and alternative medicine in children with autism spectrum disorder in europe abstract this study examined the prevalence and correlates of use of complementary and alternative medicine (cam) among a sample of children with autism spectrum disorder (asd) < years in european countries (n= , ). forty seven percent of parents reported having tried any cam approach in the past months. diets and supplements were used by % of the sample and mind-body practices by %; other unconventional approaches were used by % of the families; and a minority of parents reported having tried any invasive or potentially harmful approach ( %). parents in eastern europe reported significantly higher rates of cam use. in the total sample, children with lower verbal ability and children concurrently using prescribed medications were more likely to be receiving diets or supplements. concurrent use of high levels of conventional psychosocial intervention was significantly associated with use of mind-body practices. higher parental educational level also increased the likelihood of both use of diets and supplements and use of mind-body practices. conclusion: the high prevalence of cam use among a sample of young children with asd is an indication that parents need to be supported in the choice of treatments early on in the assessment process, particularly in some parts of europe. introduction autism spectrum disorder (asd) is a behaviourally defined disorder characterized by impairments in social communication abilities and the presence of restricted and repetitive behaviours and atypical sensory responses [ ]. despite the evidence that behavioural and social communication interventions can ameliorate symptoms and improve outcomes [ ] it is not a condition for which a ‘cure’ is currently available. the uncertainty concerning the developmental outcomes, the limitations to existing treatments, and the lack of a simple cure have been indicated as possible reasons for the high prevalence of use of therapies based outside the domain of conventional medical and psychological practice by families of children with autism [ ]. such therapies, generally defined as complementary and alternative medicine (cam), comprise a myriad of “interventions” that range from unproven and untested treatments to approaches that have been found to be harmful. the national center for complementary and alternative medicine (nccam) distinguishes the following broad areas of cam: ‘natural products’ (often sold as dietary supplements), ‘mind and body practices’ (such as massage or sensory integration therapy) and a residual category of other complementary health approaches that do not fit neatly in the previous ones, such as homeopathy (http://nccam.nih.gov/). research on cam use broadly refers back to this classification, but additional meaningful categories of cam such as “invasive or potentially unsafe approaches" [ ] and other unconventional approaches that are not strictly classifiable as cam (such as pet therapy) are also often included in such surveys. this, and the fact that the nccam classification has changed over time, have led to some inconsistency across studies. http://nccam.nih.gov/ the efficacy of cam treatment is controversial, but for most of these approaches there simply is not enough evidence to evaluate them [ ]. for example, while gluten- and casein-free diets are widely used and reported to be efficacious by parents [ ], to date only two rcts have tested their efficacy, yielding mixed results that prevent any recommendation of these exclusion diets as standard treatments [ , ]. omega- fatty acids are increasingly used in asd despite lack of understanding on which might be the optimal dosage and insufficient evidence of efficacy [ ]. moreover, while cam is often used in combination with medication, little is known about potential aversive effects of the interaction between drugs and supplements, which requires careful monitoring [ ]. there is some positive evidence for some cam approaches, such as horse-riding [ ] and massage [ ]. a cochrane review of auditory integration training, a costly and theoretically ill-specified treatment, did not find sufficient evidence to support its use [ ]. in us based samples, there is some evidence that cam use in children or young people with asd is associated with greater functional difficulty [ , , ], but this has not always been replicated [ ]. a higher parental educational level and high levels of use of conventional therapy (> hours) have also been found to be associated with cam use in children with asd [ ]. cultural and systemic factors (such as families’ own recognition and beliefs around aetiology and course of symptoms as well as the actual availability of conventional therapy) might also play a role in the decision to use cam [ ]. professionals’ opinions vary widely on the topic [ ] and might be another source of influence on family choice. these aspects are likely to differ in different parts of the world [ ], however with the exception of a non-systematic review based on professionals’ opinions [ ] no studies to date report on the use of cam in europe. moreover, different factors might play a different role in use of specific types of cam, but this is only beginning to be addressed [ ]. the present study aimed at describing the prevalence of use of cam in europe, as well as identifying the correlates of use of the two main classes of cam: diets and supplements and mind-body practices. methods ethical approval was given by the research ethics committee of the faculty of children and learning, institute of education, london, uk. parents provided informed consent before completing the survey (ioe/ fps ). survey the present study focuses on a set of questions on use of cam that was part of a wider-scope survey on use of interventions in europe [ , in press]. the survey was open for completion for days. a total of , families with a child with asd aged or younger in countries completed the online survey: belgium, czech republic, denmark, finland, france, germany, hungary, iceland, ireland, italy, netherlands, norway, poland, portugal, romania, spain, the former yugoslav republic of macedonia and the united kingdom. participants were recruited via national parents’ associations who advertised the link on their websites, with the exception of parents in the former yugoslav republic of macedonia who were recruited through the paediatric clinic of skopje in absence of a national parents’ association and completed a paper version of the survey. before launching the survey, the questionnaire was piloted with parents from the uk (n= ) and italy (n= ); as a result of the pilot, the possibility to select a generic intervention if the nature of the approach was not known to the parent was further highlighted in the initial instructions. participant characteristics are summarised in table . parent characteristics: general background information on respondents was gathered: relationship to child (mother/father/other) and educational level (below high school diploma, high school diploma, bachelor/degree, postgraduate). the educational level was collapsed for analysis into the following two categories: low educational level (up to high school diploma, %) and high educational level (degree and postgraduate, %). to comply with the relevant legislation on cross-national sharing of sensitive personal data in some of the participating countries, parents were asked to report on the country of residency but data on nationality and ethnicity were not collected. child characteristics: information on the age of the child at survey completion was collected and dichotomised to reflect the age at which typically children start school in europe (below age , % and years and above, %). child verbal ability was rated by parents selecting one of five options (does not talk; uses single words; uses two- or three- word phrases; uses sentences with four or more words; uses complex sentences). the options were collapsed into two categories for the purposes of analysis: low verbal ability (non-verbal or single words speech, %) and use of at least phrase speech ( %). use of conventional therapies and prescription medication: parents were asked to report on current use of conventional behavioural, developmental and psychosocial intervention (such as applied behavioural analysis, occupational therapy, speech and language therapy…) and medication. a total of , parents ( %) reported using at least one conventional intervention. the number of conventional interventions used ranged from to (m= . , sd= . ; iqr: - ); more detailed results are reported in [ , in press]. for the purposes of this analysis, we classified the sample for level of use of conventional treatments. three levels of use were defined based on the distribution of number of interventions used: no use ( therapies used; %), medium level of use (use of - therapies; . %) and high level of use (use of or more therapies; . %). parents reported using at least one medication in . % of cases in the total sample. use of medication was dichotomised for this analysis into a “use of any medication” binary variable. cam: a list of cam approaches was drawn from the literature. parents were asked to endorse all the approaches that they had used with their child in the previous months. the cam approaches, listed alphabetically in the form, were successively classified into four categories for the purpose of statistical analysis: the three categories proposed by the nccam (diets and supplements; mind and body practices; other unconventional approaches) and a fourth category of “invasive, disproven or potentially unsafe cam” (including chelation, hyperbaric oxygen therapy and packing) which was added [following ]. data analysis descriptive statistics were used to report on use of each cam approach, grouped in four over-arching categories. prevalence of use of these categories was examined in the total sample and by european regions [ ]: western europe (belgium, france, germany and netherlands), northern europe (denmark, finland, iceland, ireland, norway, united kingdom), eastern europe (czech republic, hungary, poland, romania) and southern europe (italy, macedonia, portugal, spain). to investigate the association of child and parental characteristics with use of cam, we conducted logistic regressions on the total sample for two primary outcomes: use of any diets or supplements and use of any body-mind practices. these categories were selected for the analysis on the basis of the following criteria: conceptual relevance, homogeneity of approaches included and frequency of use. in each model, the predictors were: child’s gender, verbal ability and age, parental educational level, use of any prescription medication, use of conventional therapies categorised into three dummy variables (no use of therapy, medium level of use, and high level of use; the first category was used as the reference). results ---- table about here ----- frequency of cam frequency of use of individual cam approaches is reported in table . a total of respondents ( %) reported using at least one type of cam. the rate of use of any cam was significantly higher in eastern ( %) than in western ( %, p<. ), northern ( %, p<. ) and southern ( %, p<. ) europe. the prevalence of use in northern europe was also significantly higher than in southern europe (p=. ). in the total sample, the most commonly used cam approaches were diets and supplements ( . % reported using any); use of vitamins was reported by parents ( . %) and gluten or casein free diets were reported by ( . %). the proportion of parents reporting using diets and supplements was significantly higher in eastern europe ( %) than in western ( %, p<. ), northern ( %, p=. ) and southern europe ( %, p<. ). reported use in northern europe was also significantly higher than use in western (p<. ) and southern europe (p=. ). mind and body practices were reported by respondents in the total sample ( . %); among these, sensory integration therapy ( . %) and massage ( . %) were the most commonly used treatments. parents in eastern europe also reported the highest rate of use of any mind-body practices ( %); this proportion was significantly higher than rates in western ( %, p<. ), northern ( %, p=. ) and southern europe ( %, p<. ). reported use of mind-body practices in northern europe was also significantly higher than in southern (p<. ) and western europe (<. ). a number of other unconventional approaches not included in the previously mentioned classes of cam were reported in . % of the total sample (n= ): among these, pet therapy (n= , . %) and homeopathy (n= , . %) were the most widely used. the proportion of parents reporting using such approaches was significantly higher in eastern europe ( %) than in western ( %, p<. ), northern ( %, p<. ) and southern europe ( %, p<. ). reported use in western and southern europe was also significantly higher than in northern europe (p<. and p=. ). a small minority of parents (n= , . %) reported using any invasive, disproven or potentially unsafe cam (chelation, hyperbaric chamber and packing). rate of use of such approaches was significantly higher in eastern europe ( %) than in western ( . %, p<. ), northern ( . %, p=. ) and southern europe ( . %, p=. ). the rate in southern europe was also significantly higher than the rate in western europe (p=. ). the total number of different cam approaches used for those parents who used any cam approaches ranged from to with a mean of . (sd= . , iqr: - ) in the total sample. a significant effect of european region was found on number of cam approaches used, f ( , ) = . , p<. , ω=. . post hoc comparisons indicated that the mean number of approaches used with children living in eastern europe (m = . , sd = . , iqr: - ) was significantly higher than the mean number of approaches used with children living in western europe (m = . , sd = . , iqr: - ; p<. ), northern europe (m = . , sd = . , iqr: - ; p=. ) and southern europe (m = . , sd = . , iqr: - ; p<. ). ----- table about here ----- predictors of cam use logistic regression models were performed on the total sample with use of any diets/supplements and use of any mind-body practice as outcome variables. table reports the odds ratios and % cis for the predictors of each logistic regression model. for all models, the χ² statistics were significant (all p < . ) and the hosmer & lemeshow’s goodness-of-fit tests [ ] were not significant (hence indicating well-fitting models). the nagelskerke’s r [ ] were low (range . -. ), which is an indication that several other relevant variables had not been included in the model. for each predictor, the effects reported below are intended to be over and above the effect of all other variables included in the model. ----- table ----- use of any diets/supplements use of any diets or supplements was significantly associated with low verbal ability in the children and higher parental educational level. use of prescription medication increased the likelihood of using diets or supplements by %. child’s gender and age and use of conventional therapy were not predictors of using diets or supplements. use of any mind-body practices mind and body practices were less likely to being used with boys than with girls. a higher parental educational level and high levels of use of conventional psychosocial interventions were associated with concurrent use of mind-and-body practices. child’s age and verbal ability, use of medication and medium levels of use of conventional treatments were not associated with use of this category of cam. discussion this study is the first to report on use of cam in young children with autism in europe. we found that overall % of parents reported using at least one type of cam or other unconventional treatment in the previous months. rates of use were homogeneous across europe with the exception of significantly higher rates in eastern europe ( %). prevalence data from us samples obtained from reviews of patients charts vary from - % [ , , ] to - % [ , ]. in the total sample, parents reported using diets or supplements in % of cases. previous reports of use of diets ranged %- % [ , , ], but comparisons are made difficult by the different level of detail across studies. a similar proportion of parents in our total sample reported using mind-body practices ( %). rates from previous studies ranged - % [ , ], but comparison should be made with caution as different definitions were used or cam approaches were considered individually rather than as a class. we also enquired about some invasive or potentially harmful treatments: chelation, hyperbaric chamber and packing. chelation is medical procedure involving administering various chemical substances for the purpose of binding and then withdrawing specific metals from the person's body; its potential serious side effects (including death) and the lack of sound scientific rationale argue against its therapeutic use [ ]. hyperbaric oxygen therapy involves breathing oxygen in a pressurized chamber for the purpose of increasing the amount of oxygen in the blood; it is both ineffective [ ] and unsafe (potential side effects include paralysis and air embolism). packing involves wrapping the individual in towels previously wet in cold water to supposedly reinforce the individuals’ consciousness of their bodily limits; this practice, which appears to be a clear violation of human rights, has not been evaluated systematically [ ]. in our sample, parents ( %) reported using any of these treatments with their children. among the other unconventional treatments included in the survey, it is relevant to note the high prevalence of reported use of pet therapy ( %). pet-therapy is a generic term that encompasses both the use of “assistance” pets (i.e., placement of a pet in the family) and the use of “therapy” pets by a therapist at home or in other settings; it is not possible to know whether in our sample parents were endorsing the former or the latter. higher figures ( %) have been reported before [ ]. there were significant regional differences in the rates of use of the four over-arching categories of cam, with consistently higher rates in eastern europe than in the rest of europe. this might be due to lack of access to evidence-based information in those countries, possibly as a residual consequence of the historical divide on health policies in europe [ ] or to cultural differences in attitudes of professionals and community members that are only beginning to be explored [ ]. we were interested in identifying correlates of use of cam in europe. as cam is comprised of a plethora of different types of “treatments”, we investigated correlates of use of the two main classes of approaches, selected for their conceptual relevance and relative homogeneity: diets and supplements and mind-body practices. no gender differences were found for use of diets and supplements. there was a tendency for more mind-body practices to be used with girls than with boys, but this finding should be interpreted with caution as the females in the sample were only a minority (n= , %). in our sample, non-verbal children and children with single-words speech were more likely to being treated with diets ( % increase in the probability of use), suggesting that parents of lower functioning children may tend to look to a range of interventions to respond to more severe difficulties. additionally, over and above the effect of verbal ability, children using prescription medication were also more likely to be treated with diets than children not using medication ( % increase). interestingly though, neither of these associations was found for use of mind-body practices. this suggests that previous evidence of higher use of cam in low functioning children [ , ] might be specific to some cam types. the association of use of medication with use of diets but not mind-body practice might be due to the use of supplements or alterations in the diet as an attempt to counter-balance potential side effects of medications or to “boost” their efficacy [ ]. alternatively, the association could reflect parental attitudes or beliefs (e.g., a generic belief in chemical/biological mechanisms) or the willingness of the child to orally intake pills or tablets. increased diet use in children concurrently taking medications may also reflect an attempt to counteract the weight-gain associated with many psychotropic medications, although we did not ask parents to report why their child was on a diet, which should be done in future studies. in addition, we do not have information on whether diets or supplements were medically prescribed as a treatment for specific conditions (such as iron deficiency). parents with a high educational level have been consistently reported in previous studies to be more likely to use cam than parents with a lower educational level [ , ] and in our study more educated parents were more likely to choose diets or supplements for their child as well as using mind-and body practices. notably, the increase in the likelihood was higher for the mind-body practices ( %) than diets and supplements ( %). mind-and-body practices are practitioner-delivered and their cost is on average almost double the cost of self- care therapies such as supplements [ ], and this might explain why in our sample mind-and- body practices were significantly less used by parents with a lower ses (indexed by their educational level). when the correlation of cam use and use of conventional treatments has been explored, it appears that availability and use of conventional treatments does not lessen use of cam. indeed, cam use has been found to be associated with receiving or more hours per week of conventional treatment [ ]. here, we explored the association between use of conventional treatments and use of two specific classes of cam. there was no association between use of conventional treatment and use of diets: the use of such approaches might in fact be more related to the use of medications, as suggested above. we found instead a large dose-response effect of use of conventional treatments on use of mind-body practices with a four-fold increase in the likelihood of concurrent cam use for parents reporting already using more than four conventional treatments for their child, but not for medium levels of treatment (up to three interventions). this finding suggests that use of mind-body practices is most strongly related with a tendency to try a wide number of approaches; this might indicate that some parents, over and above the effect of their child’s level of functioning (measured as verbal ability) and of their own educational level (which can be constructed as a proxy of their ses), tend to look for as many therapies as possible, whether these be conventional treatments or cam approaches. use of diets appeared to be most strongly associated with lower functioning of the child and concurrent use of prescription medication. there is concern that desperate parents may resort to unsafe or disproven cam approaches and public agencies have been actively campaigning against them [ ], but such approaches were not in wide use in our sample. however, animal-assisted therapy, whose efficacy is not yet established, is attracting increasing interest [ ] and a considerable number of parents reported using such approaches in our sample. these findings have implications for clinicians and professionals involved in the care of children with asd, in that they should engage parents in frank discussions about cam approaches, the available evidence and any potential for adverse effects. strengths and limitations there are a number of strengths to the present study, including the large sample size and the wide scope of the survey, which enquired about the use of a range of both cam approaches and conventional treatments for young children with autism in europe. moreover, while previous research has looked at predictive factors for use of cam considering child and parent characteristics as individual factors or only adjusting for parental education level, in our study we used multiple logistic regression to estimate the contribution of each predictor having taken into account the influence of the other factors. these findings can help to identify families potentially more likely to adopt cam approaches, and this information may be beneficial both to primary care providers in their role as clinical advisors, and to researchers, for example when designing trials of cam approaches. nevertheless, the findings should be seen in the context of some limitations. firstly, we employed a recruitment method (online survey advertised via parents’ associations) that might have been prone to selection bias since parents involved in associations are more likely to have a relatively high income and educational level [ ] and internet access is still a function of socio-demographic characteristics in europe [ ]. our sample had in fact a higher than average education level [ ]. however, while the recruitment strategy used necessarily prevents any claims of generalizability of our results to the european population, it has enabled us to reach a large number of families across europe. moreover, it has been argued that, given the controversy around use of cam, an anonymous online survey might actually better protect against the potential risks of selection and reporting bias [ ], than when parents are directly asked by clinicians (as happened in most other studies on the topic). furthermore, we found that reported levels of cam use in the present study were similar to previous studies in non-eu samples. the factors examined in the present study are only some of the many that might affect the decision-making process underlying the choice of using cam alongside (or alternative to) conventional healthcare, which is still largely unexplained. for example, there is preliminary evidence from a small sample of french parents (n= ) that personality characteristics such as personal control and attribution of cause of autism affect the decision to use cam or not [ ]. parents’ own use of cam is likely to be a relevant factor but has never been examined in the association with use of cam in children. further research on the topic should include these and other factors, such as beliefs on asd aetiology, to better understand the phenomenon of use of cam for children with autism. finally, reliance on parent report in absence of direct assessments places a limitation on these findings in relation to severity of child symptoms and behavioural characteristics. conclusions this was the first study to report on factors associated with use of cam in a large sample of young children with autism in europe. while little is known on the efficacy (and conversely, on the potential harm) of cam approaches, a vast amount of uncontrolled information is available on-line, putting parents at risk of embarking in sometimes costly and often non-efficacious treatments. rates of cam use, including use of disproven or unsafe approaches, were particularly high in eastern europe. the present study contributed to the understanding of the factors associated to use of cam and provided some evidence that families that tend to use a wide range of conventional treatments might also be more likely to be trying some cam approaches. the reasons behind this are not fully understood, and may reflect factors that were not captured by the present study. nonetheless these findings, taken together with the evidence of socio-economic barriers in access to treatment for autism [ , , in press], provide some insight into the lengths to which families may go in pursuit of ways to help their child progress. the findings highlight the need to further advance research funding and policy development for evidence-based early interventions for children with asd across europe. acknowledgements we are grateful to all the parents who participated in the study and to the parent associations that were involved in recruiting the participants. this research was supported by cost action bm funded by the european science foundation. tc also received support from the innovative medicines initiative joint undertaking under grant agreement n° , resources of which are composed of financial contribution from the european union's seventh framework programme (fp / - ) and efpia companies' in kind contribution. it was made possible by the clinicians and researchers who are members of the cost essea (http://www.cost-essea.com/) and eu-aims (http://www.eu-aims.eu/) networks. the cost essea work group also includes: anett kaale (norway), bernadette rogé and frederique bonnet-brilhaut (france), iris oosterling (the netherlands), selda ozdemir (turkey), antonio narzisi and filippo muratori (italy), joaquin fuentes (spain), mikael heimann (sweden), michele noterdaeme, christine freitag, luise poustka and judith sinzig (germany), jonathan green (uk). conflict of interest: all authors report no biomedical financial interests or potential conflict of interest. http://www.cost-essea.com/ http://www.eu-aims.eu/ references . akins rs, krakowiak p, angkustsiri k, hertz-picciotto i, hansen rl ( ) utilization patterns of conventional and complementary/alternative treatments in children with autism spectrum disorders and developmental 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paper presented at the annual meeting of the american educational research association ( th, chicago, il, april , ). pub type speeches/conference papers ( ) -- information analyses ( ) edrs price mf /pco plus postage. descriptors adjustment (to environment); adult counseling; adult education; gerontology! individual needs; individual power; intervention; literature reviews; *locus of control; nursing homes; *older adults; personal autonomy; *personality traits; *psychological needs; psychological studies; research utilization; *self concept abstract a review of research literature pertaining to locus of control in older adults and its application to social and educational settings indicates that reliable generalizations about the self-concept of older adults require a careful consideration of both personal and situational variables. four separate processes are useful in understanding the formation of the self-concept in older adults: self-attribution, reflected appraisal, social comparison, and identification. research relating personality factors to locus of control suggests that loss of control is often associated with feelings of helplessness and with physical decline and can even lead to learned helplessness. mindlessness is another attribute frequently associated with age and occurs when cognitive activity is habitually and automatically reduced. research on cognitive and noncognitive interventions and educational outcomes, although not conclusive, does suggest that intervention with respect to cognitive performance in elderly individuals can be facilitated through training. forms of therapy that provide adults with some sort of responsibility (such as horticulture or pet therapy) seem effective as well. one 'area that seems particularly promising is that of gerontological counseling. (mn) *********************************************************************** reproductions supplied by edrs are the best that can be made from the original document. *********************************************************************** e co aa. lc\ tin c. . laj the ecology of older adult locus opp control, mindlessness, and self-esteem: a review of research and educational implications a paper presented at the annual meeting of the american educational research association chicago, illinois april , lawrence . schiamberg chong-hee chin janyce spell department of family and child ecology college of haab ecology michigan state university east lansing, michigan u.s. department of education cin tional institute of education e cational resources information center (eric) ' this document has been reproduced as received from the person or organisation originating it. minor changes have been made to improve reproduction quality. a points of view or opinions stated in this docu ment do not necessarily represent official nie position or policy "permission to reproduce this material has been granted by to the educational res aces information center (eric)." locus of control, as a construct referring to the perceived ability of individuals to influence outcomes as a direct result of actions on their part, has been well documented as a crucial factor in older adult life satisfaction, self esteem and adaptability (gerrard, reznikoff, and riklan, ; kuypers, ; reid, haas and hawkins, ; schulz,. ). moreover, it is often the perception of such control rather than the actual exercize of it that is crucial (langer, ). the important role of locus of control has been found to hold true across populations and situations and has been found to be especially important to institutionalized older adults (schulz, ; reid, haas and hawkins, ). although research designed to investigate the nature of locus of control and the elderly has been optimistic as to benefits (langer and rodin, ; schulz, ), follow-up studies have sometimes found that the achieved benefits for the elderly were lost after the conclusion of the research experience (schulz, ). these findings warrant careful consideration prior to application of locus of control research to social and educational practices. the purpose of this paper is to review the research literature on locus of control and its application to social and educational settings. it is important to keep in mind that reliable generalizations about the self concept of older adults require a careful consideration of both personal and situational variables. this is particularly true for our understanding of locus of control in older adults. it is a common observation that some older adults have rather positive self concepts for an extensive evaluation of the concept, see david l. palenzuela, "critical evaluation of locus of control: towards a reconceptualization of the construct and its measurement," psychological reports, , , - . while others do not. some older adults adapt rather well to their situations; others do not. this documented variation in individual behavior and personality cannot, in our judgment, be best explained by exclusive preoccupation with either personality or situational factors. before considering the situational environmental and personality factors related to locus of control in the elderly, we should briefly summarize the status of research on the personality of older adults. the accepted and documented generalization about older adult personality is that of stability throughout adulthood and into old age (neugarten, ; lowenthal, ; baltes and willis, ; cooper and goethals, ; fozard and thomas, ). that is, characteristics seen during youth are more than likely to be seen in later adulthood, as well. despite this general recognition of stability, there has been an undercurrent of opinion that there are certain ,changes in older adults which, unfortunately, have a negative flavor. for example, some studies suggest that the elderly are more rigid, less flexible, less energetic and spontaneous, and more introverted than younger people (fozard and thomas, ; birren, ). while it is not our purpose in this paper to provide a detailed review of this literature on personality in older adults, nonetheless, the critique of these findings is of import for our analysis of locus of control. the studies which have offered generalizations about negative change in older adult personality have been subjected to serious criticisms: ) in the first place, it is not altogether clear whether this research was actually measuring consistencies in personality over time or consistencies in behavior due to situational factors. for example, the finding that the elderly are less energetic and spontaneous could well reflect their participation in fewer contexts conducive to energetic or spontaneous responses rather than to a change in their personalities. ) second, much of this research (in particular, cross-sectional studies) proposing personality change have serious methodological problems. for example, the cross-sectional finding that older adults are presumably more rigid than younger adults (botwinick, ), does not take into account the possibility of cohort effects. that is, older adults and younger adults measured at any given year may have very different educational backgrounds and socialization experiences. are the presumed differences (in this case, rigidity) between these older and younger adults due to real differences in personality or to differences in education and socialization? environmental and situational factors related to locus of control while it may be the case that individual differences in the adaptation of older adults do indeed reflect differences in personality and coping style (havighurst, ), there are also differences in the circumstances and situation of older adults which may have a profound impact on their adaptation in the later years. one of the more prominent such factors is the extent to which older adults remain in the same or similar environments as they have experienced in the past (fozard and thomas, ; pastalon, ). environmental and situational factors, though frequently discounted in comparison to personality factors, can be critical to successful aging in that circumstances directly affect self concept and locus of control. cooper and goethals ( ) have distinguished four separate processes which are useful in understanding the formation of the self concept in older adults as well as in individuals in other life phases. these four processes are: self- attribution, reflected appraisal, social comparison, and identification. ) self-attribution refers to the process of evaluating and judging one's behavior and, therefore, the type cf person one is. it is typically the case that our own behavior provides a significant proportion of the information necessary to make such self-judgments (bem, ; kelley, ). a distinction should be made between behavior that is of one's own choice and behavior that results from environmental constraints and, therefore, is not of one's choice 'cooper and goethals, ). for example, a man who stops working by his own choice will view himself differently than a man who was laid off from work because of a factory closing. behavior that stems from within an individual serves as a basis for assigning attributes that become a part of the self concept, whereas behavior that is a result of outside forces does not (unless the individual fails to make this distinction and wrongly attributes situational developments to some personal success failure). in other words, the combination of behavior and constraining factors enables individuals to distinguish whether their behavior is a real reflection of personal dispositions or characteristics (and, therefore, a part of our self concept) or whether it is primarily a response to a specific situation. the elderly may be especially susceptible to potentially negative self attribution processes. an important factor in the process of such negative self attributions is that the causes for behavior changes (e.g. retirement) are sometimes quite elusive or unclear to the older adult. for example, changes in behavior that, in fact, result from external situations or pressures may be erroneously attributed to internal factors (with accompanying changes in self concept). why or how might individuals make such erraneous attributions? the research on these matters with reference to old adults is rather minimal (cooper and goethals, ). a common finding of social psychologists who have examined the attribution process in general (and with particular reference to young people) is that people tend to minimize or not to take full advantage of concensus information (nisbett and borgida, ). that is, many individuals may attribute to themselves experiences and decisions which are brought on primarily by external pressures without carefully or accurately comparing their experience with other people (in similar situations). this failure of some older adults to account for the experiences of others may be exacerbated by the loss of normative reference groups particularly through retirement or the death of friends or spouses. perhaps the best example of the danger of negative self attribution processes for older adults is the social phenomena of retirement. for many individuals retirement is far less a matter of personal choice than a requirement of union contract, law, or policy (shaver, , found that even though retirement is not a matter of free choice, more than % of the retired adults sampled believed that their retirement was voluntary). nevertheless, many people insist on believing that retirement is a result of their own wishes (cooper and goethals, ). the event of retirement typically creates a need for some self attributions to be made about the causes of this new experience. although the levels of change will vary with individuals, retirement normally entails significant changes in activity and lifestyle. for many individuals retirement significantly alters their daily routines and overall life process. for some, work is replaced by substantial leisure time which is welcome. for others, poor health, lack of finances, or lack of job opportunities may force older adults into a more restricted lifestyle. how then, are these new behaviors "attributed" by the older adults? the answer is of course complex and individually-related. as cooper and goethals ( ) state: . . . much of retirement is forced on an individual by company policy or law. yet this is often hidden by the carefully elaborated myth of preparing for our own retirement. by convincing ourselves for many years that we are looking forward to retirement and the gold watch that goes with it, the fact that many of us have no choice about retirement is made to vanish. (p. ). furthermore, if one maintains the belief or illusion that retirement is voluntary, then it follows that the experiences that happen during retirement are also freely chosen. since free choice is presumably (or in this case, erroneously) the guiding force, then internal attributions may be made (changes in the self concept). in summary, there are several primary reasons why some elderly might jeopardize their self concepts by making inappropriate internal attributions: a) such behavior represents an ego defensive posture to avoid the feeling that they have been "put out to pasture"(shaver, ). this posture is consistent with the finding that most individuals (older adults included) prefer to see themselves as "origins" of their own behavior rather than as the "pawns" of external forces (de charms, ; langer, ; seligman, ; garber and seligman, ). h) because of the ambiguity of cues and pressures relating to some major life events such as retirement, the belief, for example, s that "i am worthy ov deserving of retirement" merges almost imperceptibly with the belief that "i am willfully choosing to retire." c) research on information processing suggests that individuals-are very likely to overattribute causation to the most available or conspicuous factors (tversky and kahneman, ). "of the myriad interwoven events that might lead to retirement and then to restrictions in one's lifestyle, the most available and salient stimulus--even if not the most accurate one--is old age itself. by being the most conspicuous (i.e. salient) explanation, it may also become the most available. the behaviors of the elderly are thus attributed internally to the problem of old age, to ill health, and to lack of. creativity" (cooper and goethals, , p. ). ) a second major process of self-concept formation which is intimately tied to situational/environmental circumstances is reflected appraisal (cooper and goethals, ). reflected appraisal is the process of self concept formation which is based on the evaluations and opinions of other people. that fairly widespread negative stereotypes of older adults are widely held has been a repeatedly documented finding. such pervasive attitudes are difficult to fight on the personal level, and the task is made even more difficult due to the decline in available reference groups (e.g. friends, spouses, and so on). labels such as "incompetent" and "obsolete" are sometimes accepted as the roles to be filled. "to the extent that we believe the commonly held stereotypes, then we establish social structures that serve to guarantee that those expectations are correct. they are correct because the social structures actually prompt the behaviors that are consistent with those expectations" (cooper and goethals, , p. ). ...-. ,,._ f'although the total picture is quite complex and pressures are subtle, many elderly are caught in a trap. socially ascribed practices and attitudes may push them to accept a reality that may not be of their own choosing. self attributions are made that change the self concept-- which are in turn supported by wider social belief about elderly persons. further, as these accepted beliefs are manifested they, in turn, support social conditions and social structures, and the cycles of expectation-- attributions spirals on. ) social comparison and ) identification are two closely related processes of self concept development which are of import to older adult self concept and locus of control. social comparison refers to the process wherein an individual evaluates their behaviors and opinions in comparison to those of relevant others. identification is the process of emulating or imitating the behaviors of others. the elderly typically have fewer realistic role models or standard setters to emulate. in many cases, they can only compare themselves to their more able selves in the past or to their own conceptions of what old age means, . the expectations one has for oneself in the later years becomes particularly important for the exercise of control and expected outcomes (langer, ). personality factors related to locus of control it is readily accepted that persons who feel they have control over their lives have a fairly high level of self esteem. conversely, those who feel they are to be at the mercy of their situations tend to have lower self esteem. for example, the elderly are particularly vulnerable to self-induced dependence. studies (benson & kennelly, ; seligman, ; seligman & maier, ) show that such learned helplessness results from prior experience with repeated uncontrollable negative outcomes (i.e., one learns to generalize from uncontrollable siturations to situations that may, in fact, be controllable). while experience and common sense would support these contentions, there are important mediating factors. lefcourt ( ) suggests that, in any consideration of locus of control, the constraints of reality and circumstances must be taken into account. further, the meaning or desirability of control to a given individual in any given circumstance needs to be a part of the assessment (lefcourt, ; reid, haas and hawkings, ). for example, there are often inescapable realities in the lives of older adults which are imposed by physical condition, financial circumstance and inadequate support networks. in some situations it would be pointless or self- destructive to maintain expectations of or hopes for control over patterns of events that have little or no feasible means of developing. one of the major criticisms of the research literature on locus of control - and related causal attributions - has derived from typical investigative procedures which involve only momentary or brief elicitations of causal explanation. most causal attributions have been obtained from subjects on tasks that are to minutes in duration (lefcourt, hogg, struthers, and holmes, ). this raises serious questions as to the ecological validity and the reliability of these measures particularly when applied to issues of depression, response to stress, as well as to older adult experiences. in addition to the problem of reliability, the brief and momentary quality of the typical responses has created another problem. the focus of the research on the momentary nature of states of helplessness, for example, and the emphasis on situational determinants of behavior (rather than personality determinants) (miscel, ) has resulted in minimal assessment of locus of control (or the related construct of helplessness) as an enduring characteristic of individuals (lefcourt, ). another complication of the research literature on locus of control is the inevitable attachment of value judgments to being an "internal" or an "external" (internality is viewed as "good" whereas externality is "bad"). these value judgments are often inaccurate and, in many cases, dangerous. for example, the older adults who refuse to be helped or consoled because they stubbornly think of themselves as the only ones who can handle a crisis often find themselves miserable, or worse. likewise, misplaced self-reliance (when one's abilities, in fact, are limited) might certainly be as self-defeating as the individual who withdraws when opportunities for control actually exist. the elderly, locus of control, and learned helplessness. from a normative perspective, most experts agree that growing old represents some physical and psychological declines although the extent and impact of such declines varies with individuals. nonetheless, we need to ask what the overall relationship is between such phenomena of aging and older adult locus of control. considerable correlational and observational evidence suggests that the absence of personal autonomy in older adults may account for many of the negative experiences seen in later adulthood, in general, and among institutionalized elderly, in particular (schulz, ; schulz, ; schulz and brenner, ). for example, a sense of internal control in the elderly may be positively related to both physical and psychological well-being (schulz, ; langer and rodin, ; langer, ). the literature on relocation of the aged strongly suggests that both control and predictability are critical mediators of relocation outcomes (schulz and brenner, ; pastalon, ). specifically, schulz and brenner ( ) concluded, as follows: ) the more choice, the older adult has in being relocated, the more positive are the results of relocation. ) the more predictable the new environment, the more positive the effects of relocating. furthermore) pastalon ( ) found that preparation for relocation, including information and counseling, were related to positive relocation outcomes. such preparation may, in fact, lead to better predictability. there is abundant evidence that control and predictability are related to health-related outcomes (schulz, ). this is particularly true for terminal cancer patients and kidney transplant patients (krantz and schulz, ; schulz, ; mckegney and lange, ; verwoerdt and elmore, ). for example, the response to both cancer treatments and the likelihood of survival were positively related to the amount of perceived control patients felt they had over their lives. since most of this data, however, is correlational, it is not always clear whether the patient's locus of control is a cause or a result of the person's health status (schulz, ). schulz ( ) found that for a sample of institutionalized older adults, the loss of control and reduced environmental predictability were related to feelings of depression/helplessness and to physical decline. the study involved a field experiment in which the older adults were randomly assigned to one of three conditions or groups which were visited by college students or to a fourth group (baseline) who were not so visited. (the conditions were as follows: ) condition # (control)-the older adults could determine both the frequency and duration of the visits; condition # (predict)-the older adults were told in advance of the frequency and duration of the visits but had no control over either; condition # (random)-the older adults were visited randomly; condition # (baseline) -the older adults in this group received no visits by the college students. the amount and quality of the visitation was controlled across all three visitation groups). a similar study by langer and rodin ( ) also involved an intervention designed to encourage elderly residents of a nursing home to be more responsible and in control of their daily affairs. in the experiment, nursing home residents given responsibility for making some decisions and for the, care of a plant lived longer and were physically and psychologically healthier than residents who didn't have those responsibilities. schulz ( ) points out that a "no treatment control group" was not included in this study, and that the results should be viewed with this fact in mind. with reference to these two experiments, schulz ( ) notes that long term follow-ups on the results of patient participation differed. rodin and langer's follow-up months after their experiment yielded the same results noted above in their original study (rodin and langer, ). however, schulz's follow-up at , , and months later showed that the positive effects reported above in his study were temporary in schulz ( ) notes also that both his study and that of langer and rodin in had populationsof relatively high socio-economic status. he reports the results of a later investigation (krantz and schulz, ) which lent support to the contention that the positive effects of perceived control are felt across ses. nature. in fact, those individuals who showed improvement in psychological and physical health experienced "significant declines" after the termination of the study (schulz and hanusa, ). in addition, schulz ( ) suggested that the increased attention paid to the elderly subjects may have been a confounding factor in his investigation of locus of control. in summary, there appear to be two contradictory findings regarding the long-term participation effects in the langer and rodin ( ) and the schulz ( ) experiments. effects appear to be relatively long lasting in the langer experiments and short-lived in the schulz experiments. how might this descrepancy be explained? as suggested by schulz ( ), one approach would be to examine both sets of experiments from the perspective of attributional analysis and the learned helplessness theory (abramson, seligman, and teasdale, ). according to this theoretical perspective, individuals develop attributions for locus of control on the basis of three primary factors: ) internal- external attributions (internal attributions are from the individual, external are from the environment); ) stable-unstable (stable factors are recurrent over time and long-lived, unstable are sporadic and short- lived); ) global-specific (global factors appear across situations; specific factors are limited or unique to a given situation). abramson et al. ( ) suggest that each of these three types of causal attribution has specific effects on the individual. attributions to internal-external factors typically have an influence on self esteem. attributions made to the stable-unstable factor would be expected to have an impact on the long-term consequences of a particular experience. finally, attributions made to the global-specific factor would influence the generalizability of one specific experience to others of a relatively similar nature (abramson, et al., ). if we apply this theoretical perspective to the findings of langer and rodin ( ) and schultz ( ), it is possible that the langer intervention encouraged the elderly nursing home residents (in the experimental group) to make all three types of attributions: internal, stable, and global. that is, the communication to the experimental group which strongly emphasized the responsibility of the older adults, probably altered the subjects attributions regarding their ability to control outcomes in the environment. as a consequence the gains in the experimental group lasted over time (rodin and langer, ). on the other hand, it is possible that the schulz ( ) intervention caused the older adults to do the opposite of the subjects in the langer and rodin ( ) intervention (i.e., to make external, unstable, and specific attributions). that is, the subjects in the schulz experimental groups experienced a sense of control that was not long-lived because it was dependent on the presence of an external agent (the experimenter who arranged temporary visits of students). these feelings of control would not be expected to persist once those external agents were removed. in fact, they did not persist. a closely related and somewhat similar explanation of the differential findings of the langer-rodin and the schulz experiments has to do with the notion of competence. that is, the interventions may not only have differentially affected the perceptions of locus of control but also differentially enhanced feelings of competence. a control-enhancing message was contained in the directions to langer and rodin's experimental group which specified that they were responsible for making decisions affecting their daily lives and, therefore, were competent individuals. on the other hand, the schulz ( ) intervention did little to encourage change in subject self concept or competence, over time. older adults may be particularly susceptible to interventions which enhance feelings of competence (schaie and schaie, ; kuypers and bengston, ). a primary question concerns the degree to which various parts of the experience of being elderly (such as the loss of control) are conditions inherent in the aging process or states of being that are virtually imposed through prevailing social attitudes or institutions. an illusion of incompetence, learned helplessness, and self induced dependence may result when prior experience with uncontrollable outcomes are erroneously attributed to a personal inability to control, or when an event happens that is interpreted to give cause for doubt about one's own competence. in terms of environmental or social factors (such as retirement) and/or individual or personal factors (such as declining health and having to let others perform tasks once managed effortlessly) which are typically associated with aging, there is reason for concern. mindlessness. mindlessness is another attribute frequently associated with age and occurs when cognitive activity is habitually and automatically reduced. langer ( ) contends that mindlessness, or the automatic processing of information, is only recently gaining recognition as a medium of interaction with the environment. that people may function on the basis of cues rather than actual informational content has been repeatedly supported by research (langer and abelson, ; langer , a; langer and roth, ). mindlessness is thought to be a product of overlearning--where much of ", . interaction is taken for granted and assumed to be the same as or similar to past experience. langer ( ) has demonstrated that when given the responsibility to attend to matters and remember events, nursing home residents' deficits in those areas could be reduced and possibly reversed. however, langer suggests that mindlessness will not be employed if one of two circumstances arise: ) a situation is novel or ) if an effortful response is necessary. both situations are those in which the "cues" are inefficient and it is necessary to gear attention to the matter. these are rather startling realizations when it is recalled that we ordinarily assume people are consciously and fully processing information on a continuous basis. we sometimes assume diminished output to be a result of diminished capacity, when in fact it may be simply "mindless" behavior. the consequences of such unwarranted assumptions for the elderly are serious. until recently, many researchers in the fields of sociology and psychology have concerned themselves primarily with the role of consciousness (served by controlled information processing) in human behavior and interaction. comparatively, little attention is given to unconscious mode of behavior, believed to be served by automatic information processing. the automatic process of information, as opposed to conscious information processing, is a reduced level of cognitive activity caused by many repetitions of a particular experience, or in some instances, by a single exposure. the term "mindlessness" is frequently used as a synonym for this automatic processing of information. mindlessness is considered to have an adaptive function, in that it frees conscious attention to be used elsewhere. however, it can also result heightened vulnerability to external circumstances. unlike younger populations where mindlessness is often adaptive (e.g. to reduce the amount of information in novel situations into a more manageable amount), many of the elderly (especially those in nursing homes) live in the environments that may not be conducive to opportunities for thinking, responsibility, and conscious information processing. in such circumstances "mindlessness" has no positive adaptive function. indeed, langer ( ) suggests that premature death may follow when the environment prevents this activity over a prolonged period. according to langer ( ) there are two primary ways in which mindlessness works to the disadvantage of the elderly. first, mindlessness can lead to increased vulnerability to interpersonal external influences which affect one's self-competence and self-esteem. second, individuals regardless of their ages need a minimal amount of active conscious information processing to ensure survival. unfortunately, many institutionalized elderly are not likely to have even a threshold level of cognitive thinking due to extremely routinized environments. because of their age and the structure of their environments, such individuals are more likely to experience considerable routinization which leads to routinization. the end result would be much less ongoing active information processing for this group as a whole (langer, ). as discussed above, a positive relationship has been found between survival and mindfulness (langer & rodin, ; schulz, ), where a responsibility-encouraged group (i.e., the group was encouraged to make decisions and given plants and other things for which to be responsible) lived longer than the comparison group. a mindlessness explanation and the loss of perceived control explanation are interdependent in that if a person believes he/she has control over his/her environment, there will be more opportunity for conscious thinking than if one perceives no control. to support this argument, langer ( ) cites several studies which demonstrate the general tendency of people (not only the elderly) to behave mindlessly, in routinized situations (not because they are literally thoughtless) ) because they are capable of organizing a great deal of the complex social information into structures (schemes) that can be evoked by simple cues; ) because these coherent units (i.e., chunking of smaller units of information into larger ones) can be overlearned; and ) because people process only a minimal amount of information to get them through the day, unless the situation is novel or an effortful response is required (newton, engquis, and bois, ; langer and abelson, ; langer, ; langer and roth, ; langer, ; miransky and langer, ; langer, blank, and chanowitz, ). these studies support the idea that much of the behavior that people assume to be performed mindfully may instead be enacted rather mindlessly because they process only a minimal amount of information when they are in a routinized environment (with overlearned tasks to be performed). langer ( ) asserts that the clinical implications and consequences of this medium of engagement with the environment is especially consequential for the elderly, since by virtue of their restricted mobility and their age, they have had more opportunity for repeated experience with their environments, thus, providing more opportunity for more "mindless" experience than their younger counterparts. while mindless behavior can be adaptive in normal environments, the elderly person in nursing homes are subject to much routinization--so much so that cognitive activity is pathologically reduced. such occurances may give an individual cause to attribute typically elderly characteristics to him/her self, and the expectation attribution cycle is back in full swing. a certain degree of mindlessness is inherent in the mastery of skills, and when competence is called into question (such as may occur with reflected appraisal) the components of a task which were previously known mindlessly miry be inaccessible for conscious replication. such may be the case for the elderly in many areas. research by langer and imber ( ) suggests that deficits may be recovered by making the components of a task salient. thus, decreases in functioning on the part of the elderly may not necessarily be a consequence of aging--but a reminent of mindless functioning. an implication of mindlessness with the elderly is that society construes such "failings" to be an indication of the need for over thorough care--and as an indication that their presently smothering practices are necessary. furthermore, the "self fulfilling prophesies initiated by the loss of perceived control, self-induced dependence and mindlessness are only a few of the many ways in which social conditions may foster what may erroneously appear to be necessary consequences of aging" ( , pp. - ). research on cognitive and noncognitive interventions an educational outcomes for the most part, there is reasonable concurrence that there are changes in cognition with age as well as cohort differences in adult cognitive ability (denney, ; denney and palmer, ). once these age differences are recognized it becomes important to determine if they can be reduced through intervention. the interventions which have typically been used fall primarily into two groups: ) cognitive intervention involving direct training or practice in specific skill or ability areas and ) noncognitive intervention involving the manipulation of such features as motivation. although locus of control, self esteem, and self concept would certainly fit into the latter intervention category. surprisingly little research has been done on these characteristics in relation to learning situations of older adults (denney, ). there is, of course, a substantial research literature on many of these factors - cognitive and noncognitive - in relation to child cognitive performance and learning (lefcourt, ). the findings, for the most part, indicate an expected and positive relationship between such noncognitive variables as positive self concept, high levels of self esteem, and high levels of internal locus of control and academic achievement. likewise, there is some support (although, not always consistent results) for the relationship between such cognitive variables as training/practice, modeling of behaviors (by teachers, peers, or parents), and feedback of results on child cognitive performance (weiner, ; weiner, russel, and lerman, ; lefcourt, ). the research findings on the impact of cognitive and noncognitive interventions for older adults are, as might be expected, less conclusive although there are some reasonably clear directions. with reference to cognitive performance of elderly individuals, intervention for some (though not all tasks) can be facilitated through direct traiing (i.e. telling a subject how or what to perform) (denney, ). the utility of these findings is not always clear due to methodological problems in the studies as well as the limited scope of learning activities examined. likewise, the effects of practice on adult cognitive performance are not consistent across tasks (panicucci, ; hoyer, hoyer, treat, and baltes, ). on the other hand, feedback and modeling appear to be particularly effective interventioon techniques (hornblum and overton, ; denney ). the research on noncognitive interventions has, for the most part, been based on the assumption that the elderly do not perform up to their ability level because of factors other than the simple cognitive characteristics of a learning situation. for example, these studies appear to suggest that older adults may lack motivation, lack self- confidence, or lack the time to think about or plan appropriate response strategies (i.e. the lack of predictability in a learning situation). unfortunately, there is very little research on the relationship of such factors to older adult cognitive performance, problem solving skills, or educational outcomes. the few well-designed or well-conceptualized studies do not show any facilitative effects on problem solving or educational achievement (denney, , ). however, it is important to bear in mind that these results do not prove that the manipulation of such variables is unimportant. there are several reasons for this cautious optimism: ) the relatively small number of studies on noncognitive interventions deal with a limited range of laboratory/cognitive activities. ) there is need for much more research before any reasonably conclusive judgment can be made. practical applications of locus of control concepts langer and rodin's ( ) research involved some of the principles presently encompassed in what is known as horticulture therapy. horticulture therapy has been around since and is recongized as a valuable activity for the elderly (olszowy, ). "pet therapy" or "companion animal therapy" has gained recognition recently as another means of engaging successful interaction with the elderly. a british researcher in the 's found that elderly ladies who were given parakeets to care for did far better in terms of world outlook than women given begonias (science, ). in addition to being an outlet for perceived control, pets especially (but plants also) can act as a "social lubricant" fostering interaction and provide an imperative for exercize (science, ). pets also provide non-judgemental acceptance (to counteract low self esteem) provide tactile contact human caretakers may be reluctant to give (scratch a cat and it purrs!) and provide a purpose to getting up every morning ("if i don't feed the goats no one will"). responsibility is not unrelated to locus of control. also animals may present more novel, less cue specific situations--so that mindlessness becomes an inappropriate. recent calls for change: signs for hope a special interest group of the american occupational therapy association was set up in specifically geared to gerontic occupational therapy. this special interest group contains more certified occupational therepy assistants than any other, and has as its stated goal "to achieve a person-enironment fit that enables the older person to function as competently as possible" (rogers, , p. ). the relationship with locus of control is fairly obvious but the need for greater understanding is underscored. the profession of gerontological counseling !s taking shape--and is already confronting/challenging the status quo (johnson and stripling, ). again, the need for greater understanding of the needs of the older person is necessary, as opposed to the perpetuations of expectancies alone. bibliography abramson, l.y., seligman, m.e.p., & teasdale, j. 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( ). the cognition-emotion process in achievement-related contexts. journal of personality and social psychology, , - . c a s o c lÍ n ic o revista científica da ordem dos médicos www.actamedicaportuguesa.com a r ti g o a c e it e p a r a p u b li c a Ç Ã o d is p o n Ív e l e m w w w .a c ta m e d ic a p o r tu g u e s a .c o m animal-assisted therapy in palliative care terapia assistida com animais nos cuidados paliativos vanessa quintal , paulo reis-pina , acta med port xxx; (aop):xxx-xxx ▪ https://doi.org/ . /amp. abstract there are still many cases where traditional medical care does not provide a realistic solution for patients with devastating diseases so other interventions should be adopted. we present a case report of a year-old woman admitted to a palliative care unit due to stage iv colon adenocarcinoma, and we describe the contribution of a six-year-old yorkshire terrier in her symptom management. animal-assisted therapy can be of great use in palliative care, contributing to the patients’ pain management, relief from suffering and improvement of quality of life. keywords: animal-assisted therapy; complementary therapies; holistic health; palliative care resumo existem casos em que os objetivos tradicionais dos cuidados médicos não apresentam soluções realistas para curar os doentes que enfrentam doenças devastadoras; devendo outros métodos ser aplicados. os autores apresentam o caso clínico de uma mulher de anos admitida numa unidade de cuidados paliativos devido a um adenocarcinoma do cólon estadio iv, e descrevem o papel que um yorkshire terrier, de seis anos, teve no controlo sintomático desta doente. a terapia assistida por animais pode ser de grande utilidade quando usada com um objetivo terapêutico em cuidados paliativos, ajudando a reduzir a dor e o sofrimento dos doentes, aumentando a qualidade de vida. a terapêutica assistida por animais pode ser de grande utilidade nos cuidados paliativos, contribuindo para a gestão da dor dos doentes, alívio do sofrimento e melhoria da qualidade de vida. palavras-chave: cuidados paliativos; saúde holística; terapia assistida com animais; terapias complementares introduction the american medical association described palliative care as a “therapy focused on decreasing pain and suffering by providing symptom-relieving treatments, along with comfort and support for patients of all ages”. in a time when medical treatment strategies are in profound and continuous development, there are still many cases where traditional medical care does not provide a realistic solution for patients with devastating health problems. for those cases alternative methods must be adopted. there has been a greater interest in the impact that the animal company can have on patients and their physical, emotional and spiritual well-being. , animal-assisted therapy (aat) is a group of interventions involving the incorporation of trained animals in a healthcare setting to achieve a specific therapeutic outcome. trained animals can be of great ben- efit in palliative care when used for therapeutic purposes in pain control, suffering management and better quality of life. these benefits have been observed particularly among the elderly. although some studies have considered the physical and psychological benefits of aat, the overall results are inconclusive. , in conventional medicine, the use of animals is rare because the health system barely addresses the real needs of the patients and is often not centered on the healing process of a vulnerable human being. the authors describe a clinical case which originality lies in the use of an animal at the service of the human person, with full respect for the patient’s self-determination. this report reinforces the importance of the non-pharmacological ap- proach in the holistic treatment of patients in palliative care. clinical case -year-old woman, former maid, recently active as a volunteer at the parish council and attending a senior university. she had been a widow since , and her family support system included her daughter, son-in-law and granddaughter. she was diagnosed with stage iv colorectal cancer in with bone and liver metastasis. due to cancer, she suffered pulmonary thromboembolism in and portal system thrombosis in . as the disease progressed, she had to be admitted in a palliative care unit for symptomatic control. on admission, her palliative performance scale was %. it was found that the patient’s main companion since her husband’s death and diagnosis, was a six year-old yorkshire terrier named cookie, a gift from her daughter, with whom the dog was currently staying. according to the unit’s philosophy, the patient was informed that she could be visited by her pet, which made her . unidade de cuidados de saúde personalizados sete rios. agrupamento de centros de saúde de lisboa norte. lisboa. portugal. . unidade de cuidados paliativos bento menni. casa de saúde da idanha. sintra. portugal. . centro de medicina paliativa. faculdade de medicina. universidade de lisboa. lisboa. portugal.  autor correspondente: paulo reis-pina. paulopina@medicina.ulisboa.pt recebido: de novembro de - aceite: abril de | copyright © ordem dos médicos c a s o c lÍn ic o revista científica da ordem dos médicos www.actamedicaportuguesa.com a r tig o a c e ite pa r a p u b lic a Ç Ã o d is p o n Ív e l e m w w w .a c ta m e d ic a p o r tu g u e s a .c o m visibly pleased. considering the distance between the unit and the daughter’s residence, the family and the pet could only visit the patient during the weekends. healthcare providers noticed a change in the patterns of rescue therapy prescribed, both for pain and dyspnea, during the pet´s visits. she only needed two rescue drugs or less, on average, these days. similarly, the edmonton symptom assessment system had, on average, lower scores in some symptoms, – namely pain, dyspnea, anxiety, depression, tiredness and drowsiness, – when daily weekday assessments were compared with weekend evaluations. as mentioned by the patient, these moments, “although scarce, were revitalizing and make the environment more fa- miliar”. discussion the use of animals in the ‘healing’ process is rare and goes beyond the ‘treatment’ measurements of conventional medicine. the originality of this case-report lies in an animal being put at the service of the terminally ill person, and thus respecting the self-determination of the human being and her value system. studies about the relationship between positive impact of animals in human health and well-being started being docu- mented in the th century. in , orlandi et al found that including therapy dog visits during chemotherapy reduced anxiety and depression. later on, moretti et al showed that pet therapy improved depressive symptoms in residents in a long-term care facility. moreover, she established that self-perceived quality of life was also greatly improved. engelman, surprisingly, noticed that staff stress levels appeared to decrease as a result of interactions with the therapy dog. in , white et al suggested that aat acts as a facilitator of the therapeutic alliance. aat can significantly reduce pain, anxiety, depression and fatigue in cancer patients as revealed in several recent studies. most healthcare institutions restrict the entry of animals due to hospital infection control standards. in this case report, the dog entered the patient’s room through a window that gave access to a courtyard. the beneficial effect of pet therapy has different possible explanations. studies of the effect of aat in patients show reduced heart and respiratory rates, decreased blood pressure and pupillary constriction and increased peripheral skin temperature. other studies report reduction of loneliness, entertainment and better sleep. according to the affective- emotional mechanism hypothesis, a relaxing human-animal bond acts on adrenal and other corticosteroid hormones. re- ports of reduced pain in patients are sustained by studies that detected decreased catecholamine and increased endorphin levels in humans receiving friendly dog visits. thus, it appears that pet therapy may facilitate relaxation which, in turn, may reduce the affective and sensory components of some types of pain, resulting in a sort of ‘hypnoalgesia’. in the description of this clinical case there are several limitations. in this report, the pet was not trained for therapeutic purposes. however, given the relative scarcity of higher quality studies on the subject, the authors decided to do a review on ‘pet or animal assisted therapy’. the medical subject head- ings states that ‘animal facilitated therapy’ or ‘pet facilitated therapy’ is “the use of live animal as a means of therapy”. assessments were performed by several professionals and not at regular time intervals. it was not possible to control for all factors that could influence the clinical results showed in this report. it was not possible to have the family and the pet visit separately. however, it was possible to observe gains in symptomatic control when the family would bring the companion animal along as opposed to visiting without it. even though there is a strong tendency in the literature to assume that human-animal companion interactions are ben- eficial, there is a lack of unequivocal hard evidence. the main limitations of studies in this field still remain: poor research designs and difficulties in associating the use of animals with health outcomes. the role of aat as a complementary therapy in palliative care is still being investigated. therefore, larger clinical trials are needed in order to acknowledge their importance. in the st century, medicine needs not only to find new ways to ‘diagnose and treat’ diseases, but to ascertain new ways of ‘caring’ for sick human beings. the innovation of medicine lives in the humanization of the medical act by putting the patient at the heart of the health system. therefore, it seems appropriate to say that animals can potentially provide benefits to patients in palliative care. protection of humans and animals the authors declare that the procedures were followed according to the regulations established by the clinical re- search and ethics committee and to the helsinki declaration of the world medical association published in . data confidentiality the authors declare having followed the protocols in use at their working center regarding patients’ data publication. informed consent obtained. quintal v, et al. animal-assisted therapy in palliative care, acta med port xxx; (aop):xxx-xxx c a s o c lÍ n ic o revista científica da ordem dos médicos www.actamedicaportuguesa.com a r ti g o a c e it e p a r a p u b li c a Ç Ã o d is p o n Ív e l e m w w w .a c ta m e d ic a p o r tu g u e s a .c o m quintal v, et al. animal-assisted therapy in palliative care, acta med port xxx; (aop):xxx-xxx conflicts of interest authors declare no conflict 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. lobo antunes j. ouvir com outros olhos. ensaios. lisboa: gradiva; . . macdonald jm, barrett d. companion animals and well-being in palliative care nursing: a literature review. j clin nurs. ; : - . research article associations of pet ownership with older adults eating patterns and health roschelle heuberger department of human environmental studies, central michigan university, mt. pleasant, mi, usa correspondence should be addressed to roschelle heuberger; heube ra@cmich.edu received february ; revised march ; accepted april ; published may academic editor: fulvio lauretani copyright © roschelle heuberger. this is an open access article distributed under the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. pet ownership has been shown to improve quality of life for older adults. the objective of this cross-sectional study was to compare older pet owners and older non-pet owners and assess differences between groups. this study was conducted on adults over years of age, who owned either one cat or one dog versus nonowners based on age, race, gender, and education. matched older pet owners (opo) versus non-pet owners (npo) pairs (𝑛 = ), older cat owners (oco) versus non-cat owners (nco) (𝑛 = ), and older dog owners (odo) versus non-dog owners (ndo) pairs (𝑛 = ) were analyzed. no differences were found between opo and npo for dietary, activity, or lifestyle, except opo had fewer health conditions [𝑝 < . ]. total oco had greater body mass indices [bmi] (𝜇 = . ± . ) than odo (𝜇 = . ± . ) [𝑝 < . ], less activity [𝑝 < . ], and shorter duration of activity [𝑝< . ] and took fewer supplements [𝑝< . ]. oco and nco differed on health conditions (𝜇= . ± . versus𝜇= . ± . , [𝑝 < . ]) and odo versus ndo differed on bmi (𝜇 = ± versus𝜇 = ± , [𝑝 < . ]). although there are limitations to this study, data may be useful for targeting marketing and health messages to older persons. . introduction pet ownership is alleged to have beneficial effects on health in older adults [ ]; therefore, a study of community dwelling, ill, and debilitated elderly adults was conducted. pet ownership was evaluated against measures of health in the netherlands. in a cross-sectional analysis of , older adults in the netherlands, were pet owners. older adults who owned a dog showed significantly (𝑝 < . ) increased activity and socialization. older adults who owned a cat showed decreased activity and socialization [ ]. in a study of scandi- navians older adults who owned a dog showed overall better health and health related behaviors when compared to older adult non-pet owners and cat owners. cat ownership was associated with higher blood pressure, worse health status, and less physical activity when compared to older adult non- cat owners (𝑝< . ) [ ]. dog ownership has been studied and found to increase activity among older adults across all seasons. authors advo- cated for policies and programs that encourage walking in geographic areas with harsh seasons using dog friendly parks and neighborhoods and providing support and education to owners [ ]. pet ownership among older adults has also been associated with the use of mental health care, but associations with loneliness or social interactions as a result of having a pet were not found [ ]. human-animal bonds are also a factor but are difficult to measure and can impact quality of life for both the owner and the pet [ ]. an “ideal” dog or an educated owner that has realistic expectations of the dog increases owner satisfaction and thus quality of life [ ]. companion animal ownership or interaction has been associated with improving feelings of “wellbeing” among those with illnesses, such as hiv, long term mental illness, congestive heart failure, diabetes, end stage cancer, acute illness, chronic pain, depres- sion, posttraumatic stress disorder, and physical disability [ – ]. however, many studies found clinical benefit, but not necessarily strong statistical significance, possibly due to the complex nature of measuring “wellbeing” and the difficulty in sampling and design in these types of studies. in recent years, several investigators studied the attach- ment of people to pets and used “relational” constructs to evaluate the effects of pet ownership and the human-animal bond on overall social satisfaction and healthy aging para- digms. pet ownership was found to be a positive influence on hindawi current gerontology and geriatrics research volume , article id , pages https://doi.org/ . / / https://doi.org/ . / / current gerontology and geriatrics research relationship satisfaction, empathy, social attitude, socializa- tion, and companionship and had postulated direct effects on health, such as increasing serum levels of neurotransmitters and hormones and overriding nociception, attenuating sen- sory deficits, and decreasing the hemodynamic changes that occur from the stress response [ – ]. in addition, increased ambulation, physical activity (through dog walking), has been found to increase measures of cardiovascular compe- tence, promote health aging, increase one’s ability to age in place, and attenuate decrements in performing activities of daily living associated with increasing age [ – ]. obesity, particularly central adiposity with concomitant loss of muscle and muscle function through infiltration of adipocytes into skeletal and cardiac muscle, has serious implications for morbidity and mortality in older persons. physical activity through dog walking has also implications for the attenuation of age related sarcopenic obesity, disability, and obesity in general [ – ]. in a cross-sectional study conducted by utz of , participants, pet ownership and overall health out- comes were assessed and analyzed. the findings of this study showed that older adults who owned a pet were in overall better health condition. older adults who owned a pet had less arthritis, healthier weights, and decreased occurrences of congestive heart failure. one of the detriments to owning a pet was that older adults with pets did have increased allergies and asthma. this study emphasizes that pet ownership results in improved overall health [ ]. there has also been some data to suggest that dementia patients may benefit from pet assisted therapies, and phys- ical activity, nutrition, agitation, reminiscing, and increased socialization were potentially significant outcomes [ , ]. in a study by freidmann et al., cognitively impaired residents (𝑛 = ) were randomized to or minutes of pet assisted therapy and statistically significant improvements were seen in physical, behavioral, and emotional function [ ]. similarly, in a study by richeson, dementia patients (𝑛 = ) who were assigned to an animal assisted therapy protocol showed decrease in agitation and greater social interactions (𝑝 < . ) from baseline [ ]. additionally research has found benefits to persons with dementia with both a robotic and a live dog. this has implications for offsetting the con- cerns of physical safety, zoonotic infection transmission from animal to human, and damage to property or environment, which is often cited as a rationale for restricting pet therapy in this population [ ]. further research into the cost benefit of pet ownership among older persons is required, but it appears that the benefits may outweigh the risks [ , ]. the rural united states (us) has a greater proportion of older adults who are impoverished and exhibit greater rates of disease and disability than all other areas of the us. according to the us census, the us centers for disease control and the us national center for health statistics, there are more over- weight and obese older persons in parts of the rural us [ ]. the national health interview data and the behavioral risk factor surveillance system datasets have shown that a great number of older adults are impaired, are physically inactive, and meet the criteria for disability. this study was conducted to assess older adults who reside in rural areas of the us, where insufficient descriptive data exist for the relationship between pet ownership and diet, activity, and lifestyle characteristics of the owner as well as the characteristics of their companion animals. the hypotheses included that older dog or cat owners would differ from one another or nonowners with regard to body mass index and select dietary intake variables, number of physician diag- nosed diseases, and prescribed medications, related to being an older adult dog owner versus having a cat or being a non- pet owner. . materials and methods this cross-sectional, unincentivized, convenient investiga- tion was done to evaluate associations of pet ownership to health and weight status of older adult owners. “this study was conducted according to the guidelines laid down in the declaration of helsinki and all procedures involving human subjects were approved by the institutional review board and human subjects committee of the primary institution where the research was conducted and informed consent was obtained from all subjects.” in addition, the work which involved analysis of secondary data on animals was approved by the above-mentioned board. all data was rendered anony- mous and the use of id number only in data entry, cleaning, coding, analysis, and dissemination was employed. data were kept confidential in a secure location and were made available only to authorized researchers at the primary institution granting approval for the study. . . data. data were not associated with any identifying information and subject confidentiality was maintained. trained interviewers (𝑛 = ), with interrater reliability ratings of cronbach’s alpha = . , solicited pet owner participants from organizations known to be frequented by older adults and pet owners, using flyers, word of mouth, and ads (e.g., senior centers, kiwanis, red hats, pet care centers, clinics, kennel clubs, and guilds). exclusion criteria consisted of the following: being < years of age, being unable to provide informed consent, inability to care for self or cat/dog, having > cat or dog/household, refusal to answer> % of questions, or failure to reside in a rural us locale. data were split by age > years, using this established cut point of the american association of retired persons. persons who were not pet owners were continuously recruited until a match was found to a pet owner. matching was based on age, gender, race, and education. anyone wanting to participate in the study was allowed to do so, but persons under the age of were excluded from the analyses. questionnaires were piloted and focus group input was used to adjust the questions in the questionnaire. sequential focus group information was used to hone internal validity. body condition scoring charts (bcs) for pets that had a nine-point scoring system that were available without copy- right were used. scale weight was obtained when available; otherwise owner weights were self-reported, as were the data from non-pet owners. food intake data was gathered from semiquantitative food frequency questionnaires. data on exercise was collected using frequency, duration, and inten- sity scales, with respondent walking for exercise specifically current gerontology and geriatrics research comparison between matched cat and dog owners . . . . ∗∗ ∗∗ ∗∗ ∗∗∗∗∗ ∗ non-dog ownerdog ownercat owner non-cat owner . . . . . . . . . . . . § § bmi diagnoses medications otc supplements nonowners > years of ageand figure : characteristics of older pet owners versus matched nonowners> years residing in the rural united states (𝑁= ). ∗𝑝< . , ∗∗𝑝< . , and §𝑝< . . excluding dog walking. dog walking data was collected in the section devoted to the animal and its care. . . statistical analysis. statistical analyses were run using spss� v. , ibm corporation, raleigh-durham, nc, usa, under license from central michigan university, mount pleasant, mi . descriptive statistics, such as frequencies and means, independent sample 𝑡-tests between matched owner to nonowner pairs, chi square analysis for older own- ers and nonowners, and nonparametric statistics for data that were not normally distributed (such as semiquantitative food frequency intake data) were run. analyses were run on all data with split analyses done by gender. logistic regression models were run stepwise. significance was determined by a 𝑝 value of < . for all tests. trend was determined by a 𝑝 value set at< . . failure to reach statistical significance was denoted by ns. . results . . older owners versus older nonowners. split analyses resulted in matched older pet owners (opo) versus non-pet owners (npo) usable pairs (𝑛 = ), cat owners (oco) versus non-cat owners (nco) pairs (𝑛 = ), and dog owners (odo) versus non-dog owners (ndo) pairs (𝑛 = ). no sig- nificant differences were found between total opo and npo for dietary intake, physical activity, or lifestyle characteristics, with exception of opo having fewer numbers of documented health conditions, despite being matched for demographics using 𝑡-testing. there were differences between oco versus nco and odo versus ndo on prescribed medication number and bmi (figure ). older pet owners did differ from older non-pet owners on other health related characteristics within groups. logistic regressions were run on all age matched owners and nonowners. regression models showed that the largest contribution to variance in the number of physician diag- nosed owner health conditions was pet ownership (table ). an increase in bmi was also related to number of owner diag- noses in the sample, and a trend was observed for increased intake of added fat. no other variables, either dietary or life- style, contributed significantly to the models. to investigate contributions by gender, the data were split and analyzed; significant contributions were seen in number of diagnoses for males on bmi, dietary intake of added fats, and servings of whole grains, fruits, and vegetables. in females, pet ownership was found to be significantly related to decrease in disease number, but bmi ceased to be con- tributory. no other dietary or lifestyle variable was found to contribute significantly among females. it should be noted that there were more females than males in the sample and, thus, data from female respondents’ contributed heavily to the findings from the total sample. . . older dog owners versus older non-dog owners. there were odo and ndo over age of in the sample. mean age was . ± . years; % of the sample was caucasian and % female. odo versus ndo showed significant differences between bmi, number of diagnoses, and prescribed medi- cations using 𝑡-tests (figure ). the dog owners’ dogs were, on average, . ± . years old and had been owned for𝜇 = . ± . years. the most commonly owned dog was female ( %) and neutered ( %) and % were identified as pure bred labrador retriever. respondents classified their dogs by current gerontology and geriatrics research ta bl e : r eg re ss io n m od el so fb od y m as si nd ex ,d ie ta ry ,a nd lif es ty le ch ar ac te ri st ic so n he al th in pe to w ne rs an d m at ch ed no no w ne rs ov er ag e of fift y (𝑁 = ). a ll ol de ro w ne rs ve rs us m at ch ed ol de rn on ow ne rs to ta l( 𝑁 = ) m al es (𝑛 = ) fe m al es (𝑛 = ) b se 𝛽 t si g. b se 𝛽 t si g. b se 𝛽 t si g. o w ns pe t − . . − . − . . − . . − . − . . − . . − . − . . bm i( kg /m ) . . . . . . . . . . . . . . . ‡ † m od el ‡ r = . ;r = . ;a r = . ;s ee = . ‡ r = . ;r = . ;a r = . ;s ee = . ‡ r = . ;r = . ;a r = . ;s ee = . sm ok e (p ac k ye ar s) . . . . . . . . . . . . . . . a lc oh ol (d ri nk /w ee k) . . . . . . . . . . . . . . . † m od el r = . ;r = . ;a r = . ;s ee = . r = . ;r = . ;a r = − . ;s ee = . r = . ;r = . ;a r = − . ;s ee = . fr ui t, ve ge ta bl e (s er vi ng /w ee k) − . . − . − . . − . . − . − . . . . . . . w ho le gr ai n (s er vi ng /w ee k) . . . . . . . . . . . . . . . lo w fa td ai ry (s er vi ng /w ee k) − . . − . − . . − . . − . − . . − . . − . − . . fa st fo od (s er vi ng /w ee k) . . . . . − . . − . − . . . . . . . a dd ed fa t( se rv in g/ w ee k) . . . . . . . . . . . . . − . . fi sh (s er vi ng /w ee k) − . . − . − . . − . . − . − . . . . . . . † m od el r = . ;r = . ;a r = . ;s ee = . ‡ r = . ;r = . ;a r = . ;s ee = . r = . ;r = . ;a r = − . ;s ee = . o ld er do g ow ne rs ve rs us m at ch ed no n- do g ow ne rs to ta l( 𝑁 = ) m al es (𝑛 = ) fe m al es (𝑛 = ) b se 𝛽 t si g. b se 𝛽 t si g. b se 𝛽 t si g. o w ns pe t − . . − . − . . − . . − . − . . − . . − . − . . bm i( kg /m ) . . . . . . . . . . . . . . . † m od el ‡ r = . ;r = . ;a r = . ;s ee = . ‡ r = . ;r = . ;a r = . ;s ee = . ‡ r = . ;r = . ;a r = . ;s ee = . sm ok e (p ac k ye ar s) . . . . . . . . . . . . . . . a lc oh ol (d ri nk /w ee k) . . . . . . . . . . . . . . . † m od el r = . ;r = . ;a r = . ;s ee = . r = . ;r = . ;a r = − . ;s ee = . r = . ;r = . ;a r = . ;s ee = . fr ui t, ve ge ta bl e (s er vi ng /w ee k) − . . − . − . . − . . − . − . . − . . − . − . . current gerontology and geriatrics research ta bl e : c on tin ue d. w ho le gr ai n (s er vi ng /w ee k) . . . . . . . . . . . . . . . lo w fa td ai ry (s er vi ng /w ee k) − . . − . − . . − . . − . − . . − . . − . − . . fa st fo od (s er vi ng /w ee k) . . . . . − . . − . − . . . . . . . a dd ed fa t( se rv in g/ w ee k) . . . . . . . . . . . . . . . fi sh (s er vi ng /w ee k) − . . − . − . . − . . − . − . . . . . . . ‡ † m od el ‡ r = . ;r = . ;a r = . ;s ee = . ‡ r = . ;r = . ;a r = . ;s ee = . r = . ;r = . ;a r = − . ;s ee = . o ld er ca to w ne rs ve rs us m at ch ed no n- ca to w ne rs to ta l( 𝑁 = ) m al es (𝑛 = ) fe m al es (𝑛 = ) b se 𝛽 t si g. b se 𝛽 t si g. b se 𝛽 t si g. o w ns pe t − . . − . − . . − . . − . − . . − . . − . − . . bm i( kg /m ) . . . . . . . . . . . . . . . ‡ † m od el ‡ r = . ;r = . ;a r = . ;s ee = . r = . ;r = . ;a r = . ;s ee = . ‡ r = . ;r = . ;a r = . ;s ee = . sm ok e (p ac k ye ar s) − . . − . − . . . . . . . − . . − . − . . a lc oh ol (d ri nk /w ee k) . . . . . . . . . . − . . − . − . . † m od el r = . ;r = . ; a r = − . ;s ee = . r = . ;r = . ;a r = − . ; se e = . r = . ;r = . ;a r = − . ;s ee = . fr ui t, ve ge ta bl e (s er vi ng /w ee k) − . . − . − . . − . . − . − . . . . . . . w ho le gr ai n (s er vi ng /w ee k) . . . . . . . . . . . . . . . lo w fa td ai ry (s er vi ng /w ee k) − . . − . − . . . . . . . − . . − . − . . fa st fo od (s er vi ng /w ee k) . . . . . − . . − . − . . . . . . . a dd ed fa t( se rv in g/ w ee k) . . . . . . . . . . − . . − . − . . fi sh (s er vi ng /w ee k) . . . . . − . . − . − . . . . . . . † m od el r = . ;r = . ;a r = − . ;s ee = . r = . ;r = . ;a r = . ;s ee = . r = . ;r = . ;a r = − . ;s ee = . † c on st an t. ‡ st at is tic al ly si gn ifi ca nt at th e le ve lo f�푝 < . . current gerontology and geriatrics research breed. respondents were specifically asked if the dog was a mix or pure bred, but no further investigation into lineage was made by interviewers. in regression models for ndo matched on age to odo, pet ownership contributed significantly to decreased number of diagnosed conditions in both males and females. in males, increased bmi was significantly related to increased number of health conditions, but the relationship did not hold for females. smoking and alcohol use did not show statistical sig- nificance in the regression models, although a trend was seen between smoking history and increased number of diagnoses in women. in men, dietary intake of whole grain and added fat contributed significantly to model variance (table ). . . older cat owners versus older non-cat owners. there were oco and nco in this sample. mean age of the participants was . ± . years; % were caucasian and % were female. older co and nco differed significantly on number of diagnosed health conditions (𝜇= . ± . versus 𝜇= . ± . , [𝑝< . ]) using 𝑡-tests. older cat owners had fewer health problems than nco despite being matched on available demographics (figure ). their cats were on average . ± . years of age and had been owned for𝜇 = . ± . years. the most commonly owned cat was female ( %), neutered ( %), and shorthaired ( %). regression models for diagnosed health conditions among oco and matched nco are shown in table . own- ing a cat was associated with fewer health problems in the sample, but significance was only seen in females, after the data were split by gender. there were too few males in this sample, which reduced power to detect significance. no other body habitus, lifestyle, or dietary intake variable was contrib- utory in oco and nco with respect to number of health conditions in regression models. . . older dog owners versus older cat owners. using non- parametric testing oco were significantly more likely to be female than odo (𝑝 < . ). total oco had significantly greater body mass indices [bmi = wt.-kg/ht-m ] (𝜇 = . ± . ) than total odo (𝜇= . ± . ) [𝑝< . ], less physical activity [𝑝 < . ], and duration of activity [𝑝 < . ] and took fewer supplements [𝑝< . ] in 𝑡-test analyses. older pet owners had senior pets, and their senior pets had veterinarian diagnosed health conditions, most com- monly allergies ( %) and arthritis ( %) among odo and allergies ( %) and hyperthyroidism ( %) among oco. the most frequently used supplement was glucosamine for dogs and a multivitamin for cats. the most common medications were for pain control ( %) in dogs and hyperthyroidism in cats. . . matched older cat owners to dog owners to non- owners. the most frequently diagnosed health conditions among odo, oco, and npo were allergies followed by hypertension. the over-the-counter supplements used most commonly by oco, odo, and npo were multivitamins, calcium, and fish oil/omega- fatty acids, in that order. walk- ing was the most common form of non-pet-related physical activity reported among npo, odo, and oco. respondents were specifically asked to separate out walking for exercise without their dog from dog walking. walking on a treadmill or track, walking in the mall, and walking with a walking group are examples of non-dog walking exercise that was clas- sified as “walking.” to decrease confounding, all three groups were matched for all available demographics yielding usable triads (age𝜇= . ± . years). analyses of these tri- ads revealed no significant differences between npo, odo, and oco using 𝑡-tests for dietary intake data or lifestyle characteristics. the decreased sample size diminished power to detect differences among groups. nonowners had slightly but not significantly higher intakes of fruits, vegetables, and whole grains, but lower or equivalent servings of low fat dairy products. multiple linear regressions for number of owner diagnoses showed significant contributions of pet ownership and bmi, but other variables were ns. . discussion health and behaviors impacting health can be influenced by pet ownership [ ]. an example is increased activity through dog walking [ – , – ]. in this self-selected sample of pet owners> years of age matched to non-pet owners on key demographic characteristics, owning a pet was associated with fewer health problems and less prescribed medication. there were differences seen between cat versus dog owners and between those groups and nonowners on variables such as bmi, diagnoses, and health behaviors. the results point to the inherent health benefits of pet ownership for older adults, with dog ownership imparting greater health advan- tages. this may be due to the increased socialization, tactile stimulation, and psychological deterrent to loneliness that pets provide [ – ]. it has also been shown that companion animals may provide pain relief and stimulate oxytocin pro- duction, which increases bonding and feeling needed, which improves quality of life. these indicators are known to influ- ence food consumption, eating patterns, body weight, and body habitus, as well as food choices, meal satisfaction, and appetite. additionally, there are influences on neurotrans- mission, chemokines, and inflammation as well as hormones regulating blood pressure [ , ]. significant limitations to this study exist, including, but not limited to, convenience sampling, respondent bias, lack of generalizability to other populations, and lack of power to detect significant differences among the matched triads, npo, odo, and oco. older adults owning dogs may be an inherently different population than older cat owners; they may be more mobile, active, and predisposed to socialization in the first place. in addition, subjects were only included if they had one pet per household, which is a significant limitation but was necessary to ensure that the data collection on diet and other character- istics were specifically for the one pet in the home. multiple pets would have presented problems in collecting dietary and activity data, particularly if they were provided food ad libi- tum. also, older adults keeping multiple pets in advanced age may be a very different demographic than those with a one current gerontology and geriatrics research pet household. further research evaluating owning multiple pets among those of advanced age would be beneficial. owner demographics, socioeconomics, body habitus, and health are important to consider when advising older clients or marketing to older adults for themselves or their companion animals [ ]. older owners caring for older pets are a research area that should be explored, given the bur- geoning older adult population in rural areas of the united states. . conclusions in this sample, rural, older pet owners differed from matched nonowners of companion animals, on several variables, including number of health conditions and bmi. older cat owners differed from older dog owners, with higher bmis, less physical activity, and less supplement usage. older cat owners were much more likely to be female than dog owners and in worse condition. differences in dietary, lifestyle, or health related characteristics between older cat, dog, and nonowners, when matched to one another on all available demographics, while not statistically significant, showed that pet ownership was indeed beneficial for older persons. pet ownership and bmi significantly contributed to better overall health, using number of diagnosed conditions as a surrogate marker. further research in this arena is required, particularly in light of the burgeoning older adult population and the trend towards viewing pets as family members. older owner lifestyle, health practices, and care decisions may extend to their pet. treatment options for either the owner or the pet should be tailored in the context of the pet as a family member for enhanced outcomes. additional points (i) older adult pet owners have overall better health with regard to weight, health conditions, and fewer medications. (ii) older adult dog owners have better health status than older adult cat owners. (iii) pets help keep older adults more physically active and decrease loneliness and physical and cognitive decline, which improves quality of life and overall health. conflicts of interest the author declares that there are no conflicts of interest regarding the publication of this paper. authors’ contributions roschelle heuberger conceived, planned, and conducted the analysis of the article. acknowledgments the author wishes to acknowledge central michigan univer- sity for ancillary services provided and the graduate students who assisted in the data collection, entry, cleaning, coding, and analysis and would like to thank the following persons for their contributions to either collecting, entering, cleaning, or coding of the data: keirsten dewitt, allison corby, and rebecca vander sluis. references [ ] g. levine, k. allen, l. braun et al., “pet ownership and cardio- vascular risk: a scientific statement from the heart association,” circulation, vol. , no. , pp. – , . 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[ ] i. enmarker, o. hellzén, k. ekker, and a.-g. t. berg, “depres- sion in older cat and dog owners: the nord-trøndelag health current gerontology and geriatrics research study (hunt)- ,” aging and mental health, vol. , no. , pp. – , . [ ] a. l. johnson, d. pride, d. a. donahue et al., “potential bene- fits of canine companionship for military veterans with post- traumatic stress disorder (ptsd),” society and animals, vol. , no. , pp. – , . [ ] d. silcox, y. castillo, and b. reed, “the human animal bond: applications for rehabilitation professionals,” journal of applied rehabilitation counseling, vol. , pp. – , . [ ] p. sable, “the pet connection: an attachment perspective,” clinical social work journal, vol. , no. , pp. – , . [ ] j. mcnicholas, “the role of pets in the lives of older people: a review,” working with older people, vol. , no. , pp. – , . [ ] a. cloutier and j. peetz, “relationships’ best friend: links between pet ownership, empathy, and romantic relationship outcomes,” anthrozoos, vol. , no. , pp. – , . [ ] m. mueller, r. bures, and n. gee, “human animal interaction and healthy aging,” gerontologist, vol. , article , . [ ] i. h. stanley, y. conwell, c. bowen, and k. a. van orden, “pet ownership may attenuate loneliness among older adult primary care patients who live alone,” aging and mental health, vol. , no. , pp. – , . [ ] l. wood, k. martin, h. christian et al., “the pet factor—com- panion animals as a conduit for getting to know people, friend- ship formation and social support,” plos one, vol. , no. , article id e , . [ ] j. l. bryan, m. c. quist, c. m. young, m.-l. n. steers, d. w. fos- ter, and q. lu, “canine comfort: pet affinity buffers the negative impact of ambivalence over emotional expression on perceived social support,” personality and individual differences, vol. , pp. – , . [ ] c. g. himsworth and m. rock, “pet ownership, other domestic relationships, and satisfaction with life among seniors: results from a canadian national survey,” anthrozoos, vol. , no. , pp. – , . [ ] c. a. krause-parello, j. tychowski, a. gonzalez, and z. boyd, “human-canine interaction: exploring stress indicator response patterns of salivary cortisol and immunoglobulin a,” research and theory for nursing practice, vol. , no. , pp. – , . [ ] s. b. barker, j. s. knisely, n. l. mccain, c. m. schubert, and a. k. pandurangi, “exploratory study of stress-buffering response patterns from interaction with a therapy dog,” anthrozoos, vol. , no. , pp. – , . [ ] e. cherniak and a. cherniak, “the benefit of pets and animal- assisted therapy to the health of older individuals,” current gerontology and geriatrics research, vol. , article id , pages, . 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[ ] e. friedmann, s. a. thomas, h. son, d. chapa, and s. mccune, “pet’s presence and owner’s blood pressures during the daily lives of pet owners with pre- to mild hypertension,” anthrozoos, vol. , no. , pp. – , . [ ] c. m. martins, a. mohamed, a. m. s. guimarães et al., “impact of demographic characteristics in pet ownership: modeling animal count according to owners income and age,” preventive veterinary medicine, vol. , no. - , pp. – , . submit your manuscripts at https://www.hindawi.com stem cells international hindawi publishing corporation http://www.hindawi.com volume hindawi publishing corporation http://www.hindawi.com volume mediators inflammation of hindawi publishing corporation http://www.hindawi.com volume behavioural neurology endocrinology international journal of hindawi publishing corporation http://www.hindawi.com volume hindawi publishing corporation http://www.hindawi.com volume disease markers hindawi publishing corporation http://www.hindawi.com volume biomed research international oncology journal of hindawi publishing corporation http://www.hindawi.com volume hindawi publishing corporation http://www.hindawi.com volume oxidative medicine and cellular longevity hindawi 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http://www.hindawi.com depression and the psychosis and agitation in dementia. correlation of behaviour with the anatomy of neurodegeneration in the different dementias provides insights of potential use in therapy. t h e penultimate chapter by marson and briggs provides an informative review of competency and its neuropsychologic assessment in dementia, citing their recent studies in this new field research. vo l i c e r’s chapter, perhaps unavoidably, last reviews issues in management arising in the late stages of dementia. few patients die in a persistent vegetative state so that provision of meaningful activities and sensory stimulation is a requirement for most patients. among medical, behavioural and caregiver issues, i found that his discussion of tube feeding very informative. professionals interested in dementia will find something of interest here in their own fields as well as enlightenment in the related disciplines. unlike other annual collections of reviews, this one is well-indexed. i found some irritating redundancy in exposition, suggesting a need for greater use of the red pencil by senior authors and editors. figures are well-reproduced (chapters and ), except that a blow up of medial temporal lobe images in chapter would have been helpful. john r. wher rett toronto, ontario basal ganglia and thalamus in health and movement di s o r d e r s. . edited by k. kultas-ilinsky, i.a. ilinsky. published by kluwer academic/plenum publishers, new york. pages. c$ . approx. this text is notable for the authors selected. there is a “who’s who” of movement disorders beginning with anne young, jack penney and mahlon delong and including the toronto we s t e r n hospital group (including jonathan dostrovsky, william hutchison, karen davis and andres lozano). do not be put off by the dry title. there is vertical integration from basic science to clinical application. for those who wondered how pallidotomy works in parkinson’s disease when the classic model of basal ganglia predicts chorea or excessive movement, the answers are approached in these chapters. there is logical division of the formidable topic into historical perspectives, anatomical and functional org a n i z a t i o n , neurotransmitters, receptors and their role in motor behavior, movement and sleep disorders, plasticity in movement disorders, neuronal activity in movement disorders, mechanisms and efficiency of novel treatment for movement disorders. each section is further divided into chapters that touch upon every aspect of basal ganglia and thalamic circuitry and their implications in movement disorders. the chapter on microcircuits could benefit from more diagrams, the text itself being quite dense. whereas, the chapter on local and efferent neurons has lavish histochemistry panels that add to its comprehension. the editors’ chapter dealing with primate organization and connection of the motor thalamus is well-organized and well-written. the subject matter is key to understanding the organization of the basal ganglia and thalamus. the sections on plasticity in movement disorders and neuronal activity in movement disorders deal with primate and human studies. these findings explain much of the paradox of the classic basal ganglia model. finally, there is a brief transcript of discussions from the meeting on which this work is based. le journal canadien des sciences neurologiques volume , no. – may reference for graduate students and postdocs beginning a research career in this specific area, but feel it is probably too focused and unbalanced to be of general interest to senior scientists and clinicians. ian r.a. mackenzie vancouver, british columbia alzheimer’s disease and related disorders annual . edited by serge gauthier and jeffrey cummings. published by martin dunitz. pages. c$ . approx. what is common to β-pleated sheets and pet therapy or to axial flair and the neuropsychology of the capacity to consent? well, it is all in a day for those specializing in dementia and for the editors of an annual collection of reviews and essays in this field. this is the second annual collection edited by gauthier and cummings (unfortunately, contents of the first annual collection are not listed) and is as eclectic as any deliberation in the field or indeed as in any field in medicine. the untoward deterioration of manifold higher brain functions with aging now has the attention of clinical professionals and researchers from a remarkably wide range of disciplines that reflect the complexity of both the etiology and pathogenesis and management. t h i s management in wide measure needs to consider the social setting of the a ffected individual. early chapters address etiology and pathogenesis and pharmacotherapy of particular interest to neurologists and neuropathologists; three chapters address depression, behavioural manifestations of interest to neuropsychiatrists and psychiatrists, and a final chapter addresses geriatricians and family physicians caring for patients in the later stages of debility. i first read chapter by scheltens on neuroimaging, hoping for clarification of the indications in diagnosis. recent studies of mesial temporal atrophy, regional cortical atrophy and white matter change have given conflicting results that suggest that findings will mainly support what is clinically obvious. although research studies superimposing mri and pet or spect appear to give greater precision in detection of a l z h e i m e r’s disease, guidelines of the american academy of neurology recommend against use of metabolic imaging in daily practice. there is room for considerable skepticism about the value of imaging of conditions where multiple pathologic processes appear to intersect. one of these processes that i suspect enters discussion in the memory clinic i n f r e q u e n t l y, amyloid angiopathy, is thoughtfully reviewed by vi n t e r s . we learn that the amyloid does not form in the vessels of the white matter although leukoencephalopathy is seen in some forms. we also learn that % of patients dying with a l z h e i m e r’s disease will be found to have cerebral hemorrhages. the possibility that effective disease-modifying therapies are in sight is reflected in two chapters. the first by cole provides a detailed discussion of mechanisms of amyloid formation and disposal and the second by peterson reviews “mild cognitive impairment”, the term used to include subjects exhibiting the earliest manifestations of alzheimer’s disease and most likely to benefit from these therapies. this latter syndrome is identified through clinical judgement and the development of a definition suitable for clinical studies will require some ingenuity. one of the editors, gauthier, reviews studies of cholinergic agonists that have been overshadowed by the recent success with cholinesterase inhibitors. it is too early to abandon this approach to symptomatic therapy. the other editor, cummings, contributes to one of three chapters updating well-trod approaches to diagnosis and therapy of https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/ . /s https://www.cambridge.org/core https://www.cambridge.org/core/terms [pdf] positron emission tomography/magnetic resonance imaging of gastrointestinal cancers. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /j.sult. . . corpus id: positron emission tomography/magnetic resonance imaging of gastrointestinal cancers. @article{goh positronet, title={positron emission tomography/magnetic resonance imaging of gastrointestinal cancers.}, author={v. goh and d. prezzi and andrew mallia and u. bashir and j. stirling and j. john and g. charles-edwards and j. mackewn and g. cook}, journal={seminars in ultrasound, ct, and mr}, year={ }, volume={ }, pages={ - } } 	v. goh, d. prezzi, + authors g. cook 	published 	medicine 	seminars in ultrasound, ct, and mr as an integrated system, hybrid positron emission tomography/magnetic resonance imaging (pet/mri) is able to provide simultaneously complementary high-resolution anatomic, molecular, and functional information, allowing comprehensive cancer phenotyping in a single imaging examination. in addition to an improved patient experience by combining separate imaging examinations and streamlining the patient pathway, the superior soft tissue contrast resolution of mri and the ability to acquire… expand view on pubmed kclpure.kcl.ac.uk save to library create alert cite launch research feed share this paper citationsbackground citations methods citations view all figures, tables, and topics from this paper 	 figure 	 table 	x-ray computed tomography 	malignant neoplasm of 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beiderwellen, llanos geraldo, + authors t. lauenstein 	medicine 	plos one 	 	 	pdf 	view excerpt, references background save alert research feed ... ... related papers 	abstract 	figures, tables, and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") 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in intensive care: the rewards and challenges authors: . sharon m wetzig: rn, bn, gc (critical care), med. (fet); clinical nurse consultant, intensive care, princess alexandra hospital . catherine walsh: bsocwk; social worker, intensive care and trauma, princess alexandra hospital . cecile prescott: boccthy (hons ), ba (psych); senior occupational therapist, intensive care and trauma, princess alexandra hospital . peter s kruger: mbbs, fanzca, fjficm; deputy director, intensive care, princess alexandra hospital . danielle griffiths: rn, bn, gc (intensive care); clinical nurse . fiona jennings: rn, bn, gc (critical care); acting clinical nurse consultant, intensive care, princess alexandra hospital . leanne m aitken: rn, phd; chair of critical care nursing intensive care, princess alexandra hospital and research centre for clinical & community practice innovation, griffith university authors’ address: intensive care unit (ward a) princess alexandra hospital ipswich road wooloongabba qld phone: fax: email: sharon_wetzig@health.qld.gov.au key words: critical care, long-term patient, mechanical ventilation, quadriplegia, locked-in, rehabilitation abstract: background: intensive care units are generally structured and staffed to care for short term critically ill patients. this is in contrast to the increasing incidence of patients who require long term (i.e. greater than six months) intensive care in the contemporary health care context. aim: the aim of this paper is to share our experience of caring for a long term ventilated patient in intensive care, including providing a summary of strategies and considerations that proved effective in our setting. process: dealing with the initial reactions of the staff, patient and family was the first focus of care, with strategies developed to manage the psychological as well as practical challenges. core to subsequent strategies was the early formation of a multi-disciplinary case management team. ongoing challenges included integrating rehabilitation care into the intensive care, developing effective multi-dimensional communication strategies, facilitating appropriate involvement of the patient and her family, operationalising trips outside the intensive care environment and adapting the model of nursing care to suit the context. conclusion: elements essential for the effective care of a long term patient within the intensive care setting included the development and maintenance of an open and honest relationship with the patient and family, regular multi- disciplinary case management meetings and effective communication strategies throughout the health care team. importantly, clinical leaders should remain open to considering new ideas and strategies that facilitate effective care for a patient whose primary focus is different to the majority of intensive care patients. introduction you would not normally expect to find a ‘permanent resident’ in a large, tertiary referral intensive care unit (icu) with an average length of stay of five days. however this is exactly the situation in which we currently find ourselves. although largely unreported in contemporary literature, it is a situation that has become increasingly common in today’s health care context as institutions struggle with the most appropriate area to care for permanently ventilator-dependent patients. the increasing frequency of patients requiring prolonged mechanical ventilation, often referred to as the chronically critically ill, has been noted and led to a two-day consensus conference in . although there are differences of opinion as to what constitutes a long-term icu patient, or alternatively how prolonged mechanical ventilation (pmv) is defined, participants at this consensus conference agreed that pmv should be defined as � consecutive days of mechanical ventilation for � six hours per day. this broad categorisation results in a wide variety of challenges experienced by patients, with those who require mechanical ventilation on a permanent basis experiencing different challenges to those who are ventilated for several months. the limited body of literature that describes the challenges associated with caring for pmv patients concentrates on the large sub-group of patients for whom weaning from ventilation represents a realistic option. , , alternatively, rudy et al investigated the benefits of providing care for the chronically critically ill in a low technology environment referred to as a special care unit (scu) compared with an icu. patient outcomes including length of stay, mortality and complications were similar between the two care environments, with markedly reduced costs expended in the scu. although not explicitly stated, it appears that the sample in this study did not include patients who required lifelong ventilation, but were planning to return to the home environment. other literature reporting on the care the small sub-group of patients for whom ongoing mechanical ventilation and associated care is required has been limited to case studies. importantly, no studies could be located that have explored the most effective method to care for patients in whom the plan is to transition care to the home environment. given the lack of available literature in this area, as well as the lack of local experience in caring for similar patients, when sandra was admitted to our icu with locked-in syndrome (lis) we did not foresee the impact this situation would have (refer to insert for clinical details). developing a model of care to encompass long term rehabilitation and transition to a home-care environment was not only unfamiliar for most of the team, but as we discovered highly complex. having sandra as a ‘permanent resident’ in icu has been both challenging and rewarding. it has provided opportunity for creativity and innovation. we have been motivated to share this experience in an effort to provide support and guidance for other health care professionals. various aspects of our experience are described together with a summary of important considerations for those in similar circumstances. initial reactions to begin with the icu team had to deal with the enormity of the situation. we had a young woman, the mother of a young child, facing life-long ventilation. those involved in her care were faced with the impact of sandra’s clinical condition, as well as her and her family’s reactions to this. responses from staff, though varied, demonstrated that sandra’s situation significantly affected people on an emotional level. the concept of ‘shattered assumptions’, which describes the psychological impact of trauma in challenging fundamental beliefs or expectations, provides a way of understanding our initial reactions. for example, sandra’s situation challenged the widely held, though often subconscious, assumption that ‘bad things shouldn’t happen to good people’. once her clinical condition stabilised, the icu team focused on ascertaining the most appropriate place for sandra to be cared for within the hospital. we felt that the icu setting was not a suitable place for a long-term patient, nor was it a environment conducive for rehabilitation. normally, rehabilitation and discharge planning for a patient with such complex needs (particularly home ventilation) would be undertaken by other units within the hospital with the necessary expertise and experience. however, these services had become overwhelmed with patients sustaining traumatic high spinal cord injury and had exhausted capacity to provide assistance to other types of patients requiring high level home care. over a period of around three months, which involved many multidisciplinary and inter-departmental discussions, it became clear that the icu was the only feasible environment to deliver the continued care that sandra required. the realisation that sandra would become a ‘permanent resident’ in icu brought further emotional upheaval within the team. once again, our preconceived assumptions had been ‘shattered’. in this case the belief that ‘all patients in icu are short-term and critically ill’. considerable time was spent developing proposals for additional support to meet sandra’s needs, and formulating funding applications on her behalf – often to no avail. these challenges affected the team personally and professionally, impacting on the service offered and causing individuals to question their abilities at times. it meant that the staff involved worked many hours of personal time in coordinating and providing sandra’s care, to ensure that our overall service delivery did not suffer. several staff members became disillusioned and frustrated with the system. some team members had to withdraw from direct involvement to preserve their emotional health and to avoid a negative impact on sandra’s own coping mechanisms. of the strategies developed in response to these challenges, perhaps one of the most effective was the formalisation of a multi-disciplinary ‘case management’ team. this group included representatives from the senior nursing and medical staff, as well as staff from social work, speech pathology, physiotherapy and occupational therapy disciplines. the ability to talk about frustrations, as well as share successes, was of great benefit to all those involved. regular meetings also promoted a stronger working relationship between members of the team. as a group we were able to develop some innovative strategies for providing optimal care as well as supporting each other. the constant presence of sandra’s family and their willingness to be active participants in the process provided added motivation to continue moving forward. integrating rehabilitation care into icu challenges the evidence suggests that patients with lis benefit from early intensive rehabilitation care. however many challenges were faced in respect to this in sandra’s case. these were largely related to her being located in the middle of a busy icu setting. the difficulty of establishing an environment conducive to rehabilitation, as outlined by casanova et al was evident. a routine was difficult to maintain and planned activities often had to be rescheduled. this was largely due to nursing and support staff needing to re-prioritise tasks to attend to the needs of acutely ill patients within the icu. initially, there were long periods of unproductive time, which resulted in sandra spending her time either watching television or watching the unfolding dramas (and sometimes demise) of patients in adjacent bed areas - neither of which were considered constructive. the knowledge and experience of allied health team members was invaluable when it came to the task of developing sandra’s rehabilitation plan and undertaking the tasks involved. although only resourced to provide care to acute icu patients, they willingly obtained the required knowledge and gave additional time to ensure she received optimal rehabilitation care. due to her location in an acute icu rather than a dedicated rehabilitation unit sandra and her family were unable to participate in group therapy sessions. such sessions provide important education and peer support for patients, while also allowing allied health staff to provide therapy to numerous patients at one time. as a result, all of sandra’s therapy and discharge planning was completed on a : basis. additionally, the services normally available in rehabilitation areas such as day-rooms, gymnasium, trial equipment and internet access could not be offered in icu. all physical, speech and occupational therapy had to be performed in the icu bed area which is not set up to accommodate the required resources. access to equipment proved to be a considerable challenge as icu does not keep the type of rehabilitation equipment that was required (i.e. wheelchair with head & neck support, tilt-in-space shower chair, portable long-term ventilator). this meant that many items had to be borrowed, requiring ongoing negotiation with other hospital departments and corporate representatives. we also learned that purchasing equipment for use in a rehabilitation environment requires consideration of a different range of issues than when equipment is purchased for use in icu. in sandra’s case, we needed to consider the portability of equipment, size and weight, battery life and charging options. additionally, purchasing of the necessary specialised equipment required some lateral thinking with regard to funding arrangements. response our response to these challenges was largely aimed at developing the mindset of staff and making use of available resources and standard practices within the hospital. in order to encourage staff to view sandra as rehabilitation patient rather than an acute icu patient, we minimised her monitoring and medical reviews, and changed her charting from the icu computerised system to standard hospital paper format. we communicated the reason for these changes to all staff and encouraged them to start considering sandra a little differently to most other icu patients (e.g. they could leave the room for short periods if a family member was present, sandra should be considered competent to make her own decisions and is able to leave the icu for outings). we also moved sandra into one of the previously unused isolation rooms which improved privacy for her and her family. the room was set up to look less like a hospital room and accommodate some home-style furnishings (refer to figure ). she also started wearing clothes (rather than a nightgown) during the day and going on outings. in addition to these strategies, we began to institute some practices that are normally part of a rehabilitation care model. for example; we scheduled a regular multidisciplinary case conference, the outcomes of which were documented in the patient progress notes. it assisted in providing continuity of care for staff caring for sandra and in clarifying the various roles within the team. literature focusing on rehabilitation in patients with long-term critical illness emphasise the importance of such a team approach in promoting optimal care. the case management team was coordinated by the icu clinical nurse consultant who was able to provide a link between nursing, medical and allied health staff. additionally, one icu staff specialist was allocated to coordinate sandra’s medical care (usually they work on a rotating basis, caring for patients for a week at a time). having one senior nursing and medical person responsible for her care was of great benefit in ensuring consistency and continuity of care for sandra and her family. it also provided the opportunity for development of a strong rapport between sandra, her family and the health-care team which was particularly beneficial when needing to discuss difficult issues. the importance of developing such a relationship is supported in current literature focusing on patient-centred care in icu. , access to some hospital services that are not routinely used in icu was also achieved. this included referral to a leisure therapist (who provided sandra with a variety of activities and suggestions), pet therapy and meditation classes. while the effectiveness of such interventions has proven difficult to measure they are generally well received by patients and families in critical care. one possible reason for this is that they provide the ‘simple pleasures’ that patients desire yet are often denied them due to their illness. , a number of alternative therapies (see table ) were also part of her care. though these services were not previously employed in icu, their suitability for use with other long-term patients will be considered as a result of the experience gained through sandra’s care. communication ensuring good communication is a high priority when working within a large team and dealing with complex issues. this was clearly evident in the initial stage of sandra’s admission to icu, as we were presented with communication challenges with regard to patient, family and within the health care team. patient communication the challenge for sandra of communicating was exceptionally difficult. the only movement possible for her in the early stages of her admission was eyelid blinking. by using a blinking system, she could communicate “yes” and “no” answers to questions. a great deal of her time and energy went into attempts to communicate, which was often a frustrating and exhausting process. to illustrate this experience from her perspective, we have included a piece written by sandra (refer to insert ). allied health staff and sandra’s family worked together to devise a communication system using an alphabet board that is based on a telephone keypad (refer to figure ). as a result of a regimen of facial exercises and a reduction in jaw spasms, sandra had improvement in her facial muscle movement. this meant that she was able to consistently mouth words and use facial expressions which, coupled with already established communication systems, has resulted in her being able to communicate more effectively. after exhaustive trials, an electronic communication device and switch (integra mouse™) has recently been introduced and sandra is continuing to become proficient with its use. in addition to communication regarding day-to-day issues, the health care team felt that it was important to ascertain sandra’s capacity to communicate her wishes in regard to ongoing care. early cognitive screening was performed to determine if her basic cognition was intact (i.e. could she give reliable responses to questions and was she able to participate in therapy and decision making). work undertaken by schnakers et al in a population of patients with lis demonstrated that these patients can recover intact cognition. they recommend systematic neuropsychological assessment to determine any cognitive deficits and contribute to improving communication with the health care team with regard to ongoing care sandra is optimistic about the future and has a desire to continue rehabilitation and make the transition to a home-care environment. this is consistent with findings reported in the literature indicating that for patients with lis quality of life often equates with social rather than physical interaction and that the will to live is strong. the realisation that sandra felt this way also prompted a change in the way the health care team viewed the approach to sandra’s rehabilitation care. family communication current literature demonstrates that communication with family members who have had a loved one admitted to icu is often difficult. families in this situation experience high levels of stress and the usual coping mechanisms are under immense strain. sandra’s family was no exception to this. the health care team commenced regular meetings involving as many members of the family as possible (as well as sandra) in an attempt to keep everyone up-to-date with current issues and future plans. these meetings were held regularly to begin with and then on a needs basis, when specific issues developed or new information was received. over time, a level of trust developed between sandra’s family and the health care team such that they could call or email with suggestions or concerns as they arose. her family also instigated use of a diary to assist in communicating important days or planned events with staff. once again, the patience and tolerance of sandra’s family has been remarkable, contributing greatly to the positive nature of the relationship. health care team communication current evidence with regard to rehabilitation from critical illness emphasises the importance of keeping caregivers up to date with patient specific goals and maintenance of activity routines. a large health care team such as that existing in our icu (approximately staff) presented specific challenges in relation to communication. this was particularly evident with nursing staff, the largest workforce. the goal of keeping all nursing staff informed about sandra’s condition, care requirements and future plans, was difficult to achieve. at times it was not achieved and this led to a great deal of frustration for sandra and the staff caring for her. the strategies that were employed focused on communicating care requirements and providing general updates/progress reports. with regard to aspects of patient care requirements, a noticeboard-style approach was taken initially. this involved members of the case management team directing her care writing instructions and displaying them on the board. within a few weeks an entire wall was covered with instructions and it was impossible for the nurse caring for sandra to read it all in one shift, much less follow the instructions. the next and more successful plan was to incorporate the instructions, along with rehabilitation goals into a care folder. the folder was arranged into sections which could be referred to as required. patient and family involvement in care the relationship between sandra, family and the health care team has consistently been very positive. we believe that a key contributor towards this was including sandra and her family in care decisions and having her family involved in providing care from early in her admission. their involvement has proven to be very beneficial as they are an excellent resource, being proactive in addressing sandra’s changing needs. this is consistent with mayor’s work in examining ‘expert patients’ and their families. he suggests there is great possibility of a mutually beneficial relationship between patients and families and health professionals involving shared-learning. in sandra’s case, her family were instrumental in initiating and implementing the communication system, have taken a partnership approach to discharge planning and equipment trials, and have put much effort into investigating assistive technology for communication. many conversations have taken place between sandra’s family and the health care team during her admission, some simple and some very difficult. in all instances, they have been encouraged to ask questions and make comments. being an intelligent and resourceful group, they have undertaken much research into sandra’s condition and treatment options, and at times have scrutinised the health care team’s approach. evidence suggests that caring for such an ‘expert patient’ may be a threatening experience for caregivers. however, we found that investing time into the relationship, being open and honest about difficulties and encouraging sandra and her family to make suggestions has meant that this has been an enriching experience. it has encouraged us to consider new and creative ideas that we may have considered otherwise. outings the concept of taking a ventilator-dependent patient away from the icu environment is not unfamiliar. however, the decision is usually made as a result of a clinical need as opposed to ‘social’ need. also it is recommended that patient transfers from icu have a nursing and medical escort, and that equipment to manage foreseeable emergency situations accompanies the patient at all times. it was obvious that the situation with sandra required a different approach. the plan to take sandra out of icu was initiated by her family who felt that it would be of great benefit for her to have some ‘time-out’ in a home environment. the first outing was meticulously planned and involved two icu consultants (one driving the hospital van) and two senior icu nurses accompanying her. much thought went into potential problems, calculations of oxygen requirements and other possible equipment needs. the attention to detail proved to be of benefit as the first outing was uncomplicated and a great morale booster for sandra as she got to spend time at home with her family and beloved pets. discussion following this trip focused on ways of minimising the icu presence during the outing, as the aim was to remove sandra from the icu environment and allow her to have a break. achieving this would mean taking less staff and less equipment, which would perhaps increase the risk. the option of going with a registered nurse (rn) escort only and medical officer ‘on-call’ was suggested. a meeting was held with sandra and her family to talk about this and an open discussion regarding potential risks followed. they all agreed that the benefits outweighed the risks and this decision was clearly documented and communicated with staff. the decision was also made that in the event of a life-threatening emergency an ambulance would be called, rather than the staff accompanying her being expected to manage it as they would in the icu environment. further outings were undertaken with one rn, a medical officer available to attend if necessary, and basic equipment (i.e. oxygen, manual resuscitation bag, suction equipment). the rn who was to go with sandra was allocated ahead of time and informed of the patient/family discussion surrounding outings. some of the places that sandra has been to while an inpatient in icu include an international cricket match, the cinema, the theatre, music concerts, shopping trips, family birthday parties and weddings and sometimes just time at home with family (see figure ). she has also been able to leave the unit to attend appointments with her solicitor, optometrist and for acupuncture treatment. the mode of transportation for outings has changed over time. initially we used a hospital-owned van designed for transportation of wheelchair bound patients. however as this meant that we needed to have an additional staff member as driver it was not a feasible long-term option. a commercial wheelchair capable taxi has been used since then as well as the train, which is sandra’s preferred mode of transport due to its comfort. initially, some degree of unease was experienced by nursing staff, with the idea of sandra leaving the security of the icu environment. there was even a strongly negative reaction from some of the senior nursing staff who were uncertain about legal responsibility. perceptions changed over time however as they realised that the risks had been discussed in-depth with sandra and her family. after some very successful and enjoyable outings staff became more comfortable, and even requested to care for sandra in order to accompany her on outings. at one point a limit had to be placed on outings as there were three planned in one week, leaving insufficient time for rehabilitation therapy! model of nursing care the impact of having a long term patient in the icu has been multifaceted. it has affected the case management team as well as those involved in providing fundamental care. with a large number of rns on our roster the challenge of maintaining continuity of care was immense. initially a primary care group (rns who had volunteered to care for sandra on a regular basis) was established. while this worked well it could not be maintained as there were too few volunteers and many of those who did volunteer withdrew as they found it ‘too stressful’. much has been documented about the causes of stress experienced by critical care nurses, for example communication difficulties, inadequate resources or staffing, exposure to family distress and exposure to patient suffering. the stress of caring for a chronic or long-term critically ill patient has also been recognised. as previously mentioned, there may also be stress for caregivers, particularly junior staff, when confronted with an ‘expert patient’ and family. additionally there appears to be a degree of stress experienced by critical care nurses in caring for a long-term, non-acute patient. this could perhaps be related to ‘task identity’ or assumptions around the kind of work critical care nurses should or should not be doing. regardless of the source of stress in this particular case, we found that the lack of a team of primary caregivers meant that continuity of care for sandra was impacted. within a few months it became apparent that we needed to trial a new model of nursing care. the new model was based on that used to care for ventilator-dependent people in the community setting. it involves assistants in nursing (ains) providing fundamental care on a twenty-four hour basis, with indirect supervision provided by senior icu rn. like all proposed changes to staffing in a large organisation, this required formulation of a business case outlining the benefits, risks and cost (or cost saving) of such a model. once approval was gained we were able to commence implementation. although it is too early to determine the impact that this model has had on the icu, it has certainly been met with great enthusiasm by sandra and her family as well as the ains employed. additionally, the cost savings associated with this model allowed for employment of a part-time clinical nurse case manager to oversee ain training and discharge planning processes, as well as purchase of specialised rehabilitation equipment (i.e. long-term ventilator, shower/commode chair). future considerations planning for a transition to home-based care is the focus of our current activities. associated with this is the need to consider plans for sandra’s management post-discharge. specific considerations include ongoing care, equipment management, follow-up requirements and plans for hospital readmission should sandra become unwell. essentially, we need to consider that even in home-based care, sandra will remain an icu patient (according to current health district policy) and we therefore need to remember this in future planning for the icu. another area that needs to be taken into account is the decision surrounding limitation of treatment in the event of deterioration in sandra’s condition. the health care team felt that it was important to discuss and document her wishes quite early on to ensure that, regardless of the staff involved at the time, her decision would be supported. while these very difficult issues have been discussed openly with sandra and her family, the impact of limiting therapy would be significant, given the established relationship between staff and patient/family. summary the desire of the team in putting this publication together was to provide an overview of our experience in the hope that it might be helpful to others who find themselves in similar circumstances given that existing literature is scant. while many issues have been covered, the key elements in promoting success in caring for a permanent-resident in icu are described in the following suggestions: • establish and maintain an open and honest relationship with the patient and family, encouraging questions, discussion of issues and suggestion of ideas • begin regular multi-disciplinary case meetings as early as possible in the patient’s admission to promote teamwork, clarify direction and provide support for team members • consider new ideas and methods, weighing the benefits to the patient against the risks • recognise the importance of communication with the broader health care team regarding patient plans, care instructions and also the type of care (i.e. rehabilitation rather than acute) implementation of these principles has proved effective in developing a model of care that meets the needs of sandra as a permanent resident in our icu. although the process has been challenging for everyone involved, there have been many benefits gained. acknowledgment the authors would like to acknowledge the contribution of sandra and her family in the production of this article. they have willingly provided their consent, support and collaboration and have approved the content in its final form. inserts: insert : clinical scenario a previously well, year old female, was admitted to hospital for treatment of streptococcal meningitis likely secondary to an ear infection. this was then complicated by tonsillar herniation and upper spinal cord infarction following a lumbar puncture. initial management included an extraventricular drain and a posterior fossa and upper cervical decompression. over the ensuing weeks she had multiple courses of antibiotics to treat the infection, but was unfortunately left with a very significant upper spinal cord / brain stem infarction. her condition has been described as locked-in syndrome (lis). lis is most commonly defined as quadriplegia and anarthria (inability to speak), with preservation of consciousness. sandra is totally dependant on mechanical ventilation and requires full assistance for all her daily needs. she has a tracheostomy to facilitate ventilation and has had a suprapubic catheter and gastrostomy feeding tube inserted. she has experienced difficulties with pain issues, recurrent muscle spasm and recurrent infections. specialist opinions have been obtained from neurologists, neurosurgeons and spinal rehabilitation specialists all of whom concur that unfortunately her severe disability is likely to be permanent. insert : the patient’s perspective: “i am not stupid!” my name is sandra. i have been here [intensive care] since september rd . i have locked-in-syndrome and the first sentence i spelled out when able to was “i’m not stupid!” i ended up in icu after complications with a lumbar puncture and have been here ever since. it is not the right place for me as icu is designed for short term patients who need intensive care. unfortunately my treatment does not allow me to be transferred to any other ward in the hospital. the icu staff have been wonderful even though i am not the type of patient they are used to caring for. they have been very accommodating for me and my family. because of the hustle and bustle of the central icu area i was moved after several months into an isolation room. it has become my home and allowed me to be removed from the day to day activity of the icu and to start getting into a daily routine and to start my journey to going home. the biggest problem living in icu is that i would have three different nurses every day and the rotation of the nursing staff was such that i may not see a particular nurse for another month. every shift i would need to go through the same routine with the nurses who needed to reacquaint themselves with the stage that i was at, with each of them having their own way of doing things. the hardest thing was communication. some of the nursing staff did not know the communication system. i even had one nurse read through the entire alphabet to me. it takes a long time to spell out a word this way, let alone a whole sentence. it was this problem that caused the icu management to change their mode of operation. they set up bed and allowed my family to decorate and make it more homely and inviting. they also employed a case manager and six personal carers (assistants in nursing, ain). this provided a consistency of care lacking previously. i have come so far since my admission especially in the last two months. i’m not sure if this is because of the ain’s or time or both. when i got here i was little more than a vegetable, with no movement except the occasional blink and the memory of a goldfish. now i am back to normal, excepting the fact i have no sensation below the chin, and am fully ventilated. i have started eating once a week and hope to start talking soon. i would like to thank mum, andy, dad, sharon, fiona, danielle, cecille, alison, emily, kelly, catherine, the ain’s and beth, all of whom i could not do without. references . princess alexandra hospital intensive care cerner-apache iii database. accessed st august . new p. non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? australian health review ; ( ): - . . macintyre nr, epstein sk, carson s, scheinhorn d, christopher k, muldoon s. management of patients requiring prolonged mechanical ventilation: report of a namdrc consensus conference. chest ; ( ): - . scheinhorn dj, hassenpflug ms, 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[pdf] pet therapy: enhancing social and cardiovascular wellness in community dwelling older adults | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / . . corpus id: pet therapy: enhancing social and cardiovascular wellness in community dwelling older adults @article{krauseparello pette, title={pet therapy: enhancing social and cardiovascular wellness in community dwelling older adults}, author={c. krause-parello and j. kolassa}, journal={journal of community health nursing}, year={ }, volume={ }, pages={ - } } 	c. krause-parello, j. kolassa 	published 	medicine 	journal of community health nursing pet therapy can be therapeutic for older adults living in the community. [...] key method a crossover design was used to examine changes in blood pressure and heart rate before and after a pet therapy visit versus a volunteer-only visit in community dwelling older adults. relationships among stress, pet attitude, social support, and health status were also examined. study findings supported that pet therapy significantly decreased blood pressure and heart rate. ultimately, the findings supported the notion…expand view on taylor & francis caregivercanines.org save to library create alert cite launch research feed share this paper citationshighly influential citations background citations results citations view all topics from this paper 	cardiovascular diseases 	community health discipline 	community health nursing citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by 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terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue perceptions of a hospital-based animal assisted intervention program: an exploratory study lable at sciencedirect complementary therapies in clinical practice ( ) e contents lists avai complementary therapies in clinical practice journal homepage: www.elsevier.com/locate/ctcp perceptions of a hospital-based animal assisted intervention program: an exploratory study kathleen abrahamson a, *, yun cai a, elizabeth richards a, krista cline b, marguerite e. o'haire c a purdue university school of nursing, n, university street, west lafayette, in , united states b butler university, indianapolis, in, united states c purdue university school of veterinary science, west lafayette, in, united states a r t i c l e i n f o article history: received august received in revised form october accepted october keywords: animal assisted activities animal assisted interventions acute care hospital staff * corresponding author. e-mail address: kaabraha@purdue.edu (k. abraham http://dx.doi.org/ . /j.ctcp. . . - /© elsevier ltd. all rights reserved. a b s t r a c t research has shown that there are multiple benefits of animal assisted interventions for patients. however, the impact of interaction with these animals in staff is understudied, particularly in the acute care setting, and is thus a novel contribution to the literature on human-animal interaction. the purpose of this qualitative pilot study was to contribute to the body of knowledge surrounding the experiences and perceptions of hospital staff who have participated in a hospital-based animal assisted intervention program. nine face-to-face semi-structured interviews were conducted ( staff nurses, support staff members, and hospital volunteers). five themes emerged from the respondent interviews: ( ) de- scriptions of the therapy dogs; ( ) contacts with the dogs at work; ( ) connection with the dogs outside of work; ( ) benefits; ( ) drawbacks. our findings reflect abundantly positive hospital staff experiences. © elsevier ltd. all rights reserved. . introduction in recent years, increasing research has been conducted on the effects of interactions with animals. research has shown that there can be multiple outcomes, including physiological, psychological, and social benefits of animal-assisted interventions in a wide range of settings [ ]. studies have shown that having a companion ani- mal can help to reduce the cardiovascular effects of stress during laboratory experiments [ ]. animal-assisted therapy has been shown to benefit individuals in other ways as well. children and adults have shown reduced anxiety, reduced depression, and reduced social isolation when interacting with a therapy animal in single time point studies in schools, clinics, and laboratory settings [ ]. however, we tend to see that health fields, especially in the acute care setting, have been slow to assess and recognize these benefits and the importance of bonds with animals [ ]. one setting of particular interest is the hospital setting, given the growing prevalence of visiting therapy animals and the high stress nature of the hospital environment. patients may experience short-term stress during their transient stays, yet hospital staff such son). as nurses and other support staff are continually exposed to this environment. indeed, the issue of work related stress and stress management in the area of nursing has been an area of examination for decades [ ]. the stress that nurses experience is detrimental not only for the nurse who may experience physical, mental, or emotional symptoms [ ], but can also put patients at risk [fresco, ]. multiple stress management techniques have been pro- posed, ranging from managing the work environment to reducing external sources of stress, to managing the individuals' interper- sonal factors [ ]. given the positive outcomes of animal-assisted intervention in other areas, we extended this work to focus on the effects for hospital staff and volunteers, particularly in acute care settings. one of the reasons we may see limited use of animal assisted inter- vention in the acute care field is the perception of infection control issues as well as staff burden issues. with respect to infection control, when appropriate protocols and guidelines for animals visits are in place, hygiene issues are easily eliminated [ ]. how- ever, the effect of animal-assisted intervention on staff burden and stress has received little empirical attention thus was the focus of this study. delta: _given name delta: _surname delta: _given name delta: _surname delta: _given name mailto:kaabraha@purdue.edu http://crossmark.crossref.org/dialog/?doi= . /j.ctcp. . . &domain=pdf www.sciencedirect.com/science/journal/ http://www.elsevier.com/locate/ctcp http://dx.doi.org/ . /j.ctcp. . . http://dx.doi.org/ . /j.ctcp. . . http://dx.doi.org/ . /j.ctcp. . . k. abrahamson et al. / complementary therapies in clinical practice ( ) e . statement of purpose the purpose of this exploratory pilot study was to contribute to the body of knowledge surrounding the experiences and percep- tions of hospital staff and volunteers in acute settings who have participated in a hospital animal assisted intervention. program. . study context the context of this study was a -bed medical and surgical community hospital located within a medium sized midwestern metropolitan area. at the time of data collection the animal assisted intervention program, administered by the hospital's department of volunteer services, was three years old. all of the animals participating in the program at time of data collection were dogs, and each dog and handler were required to achieve accredited therapy dog status from therapy dogs international, a national therapy dog accrediting agency. animals provided services in reception areas, surgical waiting rooms, the emergency depart- ment, and medical/surgical units (including pediatrics) as reques- ted by staff members and patients. animal rounds occurred mostly during daytime hours, and at least weekly but not daily. schedules were established to match handler availability. the stated purpose of the program was to “enhance the experience of patients and visitors” (www.xyz.org). . methods nine face-to-face semi-structured interviews were conducted by an adult nurse practitioner from the research team between august and november . interviews were conducted at the hospital site that was implementing the pet therapy program, and were recorded for transcription. identifying information was removed from transcripts prior to analysis. interview respondents included staff nurses that worked on units were the animals were present; hospital staff members who interacted with the animals in the course of their workday (welcome desk receptionist, unit clerk, program manager), and hospital volunteers. respondents were identified through a list of names of persons who had frequent workplace interactions with the animals provided by the hospital volunteer director. an email request was sent and volun- teers participated in the interview. the study was designed as an exploratory pilot and convenience sampling methods were selected. as such, it is possible that the volunteer nature of sam- pling rejected positive bias into our findings. this pilot study was approved by the irb of author institutions. transcripts were thematically analyzed using nvivo soft- ware. analyses were guided by an inductive content analysis approach. themes were not developed prior to analysis but instead were allowed to emerge from the data. it should be noted, however, that the -item interview guide asked directly about contact with the animals and perceptions of those contacts, and as such influ- enced the themes that emerged from interview responses. although probes were utilized to follow-up upon responses, the interviews did not substantially deviate from the interview guide. the interview guide centered upon the domains of frequency of contact, nature of contact, perception of contact's influence on their daily experience, and perception of contact's influence on the overall hospital environment. respondents were also asked to describe examples of experiences with the animals that they perceived as particularly noteworthy. transcripts were first analyzed independently by authors yc and ka. themes were dis- cussed and agreed upon, then transcripts were reviewed to assure that the identified text was consistent with the agreed upon themes. five themes and sub-themes were identified. . findings five themes emerged from the respondent interviews: ( ) de- scriptions of the therapy dogs; ( ) contacts with the dogs at work; ( ) connection with the dogs outside of work; ( ) benefits; ( ) drawbacks. the sub-set of the theme “benefits” consisted of: ( ) decreasing staff stress; ( ) promoting social interactions and interaction with patients; and ( ) providing comfort and company to patients. . . descriptions of the dogs the therapy animals in this program were all dogs, and each of the respondents described themselves as someone who likes dogs during the course of the interview. when asked to describe their contact with the animals they frequently spoke in descriptive terms, such as: “a big, white fluffy dog … so adorable”; “… like a teddy bear”; “gentle and so sweet”; “gentle eyes”; warm and fuzzy”. . . contact with the dogs at work most respondents noted they had contact with the dogs once or twice a week and that individual time spent with the animals was generally under min per visit. all respondents stated that they would have physical contacts with the therapy dogs every time the animals came to their working area. most described feeling excited about the animal visits and made efforts to see and have physical contacts with the dogs. respondent comments included: “i … go see them unless i am really busy.” “we always pet them.” “… we will seek them out if we see them” “i'd always try to stay a little bit late so i could see [the dog].” “i try to get as much contact as i possibly can.” “‘i've got to see a patient; will you guys just wait for a few mi- nutes? i just need so bad to give so and so a hug.’ whichever dog is here, even our hospitalist will come out into the hallways and just spend that time with the patients and talk about their dogs.” sometimes, respondents noted missing the therapy dogs when they were not present: “if we missed him and he wasn't here for a week, we would be like, ‘hey what's going on?’”. “several of the nurses and i … will talk about some of the older ones that we haven't seen in a while.” . . connection with the dogs outside of work respondents relayed instances where they had talked or thought about the animals outside of work hours, often with their family, friends or neighbors: “… we talk with [our neighbor] all the time about teddy” “i talk about [the dogs] with my kids” “i will tell stories to people … ‘hey, i was at work and teddy came to visit or this big great dane came to visit’. i will tell people how good the program is and i will wonder what those http://www.xyz.org k. abrahamson et al. / complementary therapies in clinical practice ( ) e dogs are up to today and if they are getting into trouble or working hard.” “[teddy] is on my facebook.” . . benefits all respondents provided examples of areas where they perceived that the animal-assisted intervention program was beneficial. program benefits fell within sub-themes: perception of decreasing staff stress; promoting social interactions and interac- tion with patients; and providing comfort and company to patients. . . . decreasing staff stress a frequently noted benefit of the program was a perception that hospital staff felt more relaxed and happy when interacting with or thinking about the therapy dogs: “[the dog] … brightens everyone's day.” “several of us make the comment these dogs coming in are more therapy for the staff because if they are having a really stressful day and they just happen to be in the hall, our “teddy break” is something that makes it go away for a second and is needed.” “it just gives everyone a smile break.” “[it is] something else on their mind besides their worry.” “… it is a stress release” “we will see them go by and for the rest of the day we will have a better attitude. it de-stresses you, it makes you laugh, makes you smile and … takes that emotion and stress and just lets it out and the blood pressure goes down.” “it is a very good reprieve from whatever is going on …” “i need my dog fix.” “it just lets go of everything and then even when the pet is gone and you are back to reality, you still have that bit of calm that is with you just for that few minutes. i swear, it is almost like a physically transfer because it is that big of a difference.” . . . providing comfort and company to patients respondents perceived that the dogs were beneficial to the patient experience and health, and even provided a “healing magic”: “there was one time that teddy had jumped into the bed with a patient and that patient was going downhill really fast and he just laid with her for a good hour. by the end of the day, her health turned around and she was better.” “i think patients who are a little bit depressed benefit from the animals and also patients who don't have visitors.” “i think it made [the patient] feel like she was at home again. in this strange, cold medical environment, she had a friend there.” “it is very beneficial especially in some of our older patients or patients dealing with pain because it just helps when you pet an animal to release some of that oxytocin and make you feel a little better.” “… to have something as simple as [the dog] and to see [pa- tient's] look of relief and joy” “this is the best medicine” . . . promoting social interaction the therapy dogs also acted as an “ice breaker” for the inter- action between staff members, visitors and patients. respondents noted that the animals created a bond or a “pet connection” be- tween nurses and patients: “it definitely is like a social lubricant. it allows you to say, ‘look at the dog, he is beautiful and he is so warm and fuzzy’. it kind of helps you find common ground with patients sometimes if you are having trouble with that.” “everybody is just a little bit more open because i think in a way you are almost talking to the dog instead of the person in front of you.” “we [had] pictures of one of them at halloween time; they put a stethoscope on the dog and maybe a doctor shirt or something like that. they were like, ‘no, no, we have to get a picture, wait we have to get everybody together.’” . . drawbacks respondents were specifically asked if they perceived there to be any negatives or drawbacks to having the dogs in an acute care setting. three respondents noted that the dogs' presence may sadden patients who missed their own dogs, but gave no specific examples of this occurring. no respondents mentioned allergies or distraction during caregiving as concerns. one nurse respondent felt it important that the dogs be limited to certain areas of the hospital due to infection control concerns. interview respondents relayed that the dogs and the handlers were trained to work in the hospital setting, decreasing the risk of a harmful event. two nurses raised the concern that their patients did not benefit as much as they could from the animals because of the short duration of their hospital stay. . discussion the benefits of animal ownership and interaction between humans and animals are increasingly being documented through scientific research [ ]. animal-assisted intervention has been shown to improve short-term client outcomes in a variety of health service settings such as dentist offices [ ], pediatrician offices [ ], mental health treatment facilities [ , ], long-term care facilities [ , ], and other general hospital settings [ ]. less well docu- mented is the impact that animals can have in an acute care setting for patients and staff. potentially, animal-assisted intervention could be less beneficial within the hospital setting for a variety of reasons: patients are sicker and perhaps less able to interact meaningfully with the animals; animals could become a distraction during intense or life-saving situations; infection control is a top priority and may be compromised by animal presence; and animal handlers may not be comfortable in the more medically-intense situations. the aim of this pilot analysis was to contribute to the body of knowledge surrounding the experiences of staff who have experienced a hospital pet therapy program. our findings reflect abundantly positive respondent experiences. the benefits of the program for hospital staff included re- ductions in stress, promotion of social interactions, and a percep- tion of comfort and company provided to patients. these outcomes reflect findings in non-hospital populations from interactions with animals, primarily the themes of reduced stress and increased k. abrahamson et al. / complementary therapies in clinical practice ( ) e social isolation. the presence of animals has been linked to short- term reductions in physiological indicators in stress such as cortisol and blood pressure [ ] as well as the social facilitation of connection between humans in community and classroom settings [ ]. the capacity of animals to assist hospital staff in these ways represents a novel application of animal-assisted intervention that extends beyond its originally intended purpose to assist patients alone. the flow on effects for staff and other personnel who encounter animals has been understudied, and these findings indicate that further attention and acknowledgement is warranted to comprehend the full range of outcomes from these programs, particularly in acute hospital settings. a number of things may have contributed to the positive respondent experiences. first, the hospital program required ani- mals and handlers meeting the training requirements to become accredited therapy dogs, and dogs are also required to meet accrediting temperament standards. patients are given a sign to hang on the door to indicate if they wish a dog visit, and nurses are able to distribute these signs only to patients where the risk of negative impact from the dogs is low. handlers also check at the nurses' station prior to patient contact to assure that patient status has not changed. methodologically, the sampling method of gain- ing a list of respondents from the volunteer coordinator may have induced positive bias, whereby only individuals who liked or frequently engaged with the animals chose to respond. though the voluntary nature of survey research inherently includes a potential selection bias, future research would benefit from efforts to recruit a diverse sample of staff as well as studies that include interviews with patients and family members. also, objective data was not obtained to evaluate actual changes in patient condition. future research can expand upon this work to include measures of health status in both patients and staff. beyond improving physical health, our respondents indicated a perception that the animals improved the patient experience. this finding mirrors prior work indicating that children have a better perception of the hospital environment after the introduction of an animal-assisted activities program [ ]. as reimbursement agencies begin to focus more on the patient experience as a quality measure and link to increased reimbursement, specifically through achievement of high patient experience scores on the federally mandated hcahps survey (www.cms.gov), ‘soft’ interventions such as pet therapy may become more common. an 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[ ] wilmar schaufeli, a.p. buunk, “burnout.” stress in health professionals: psy- chological and organisational causes and interventions, john wiley & sons, chichester, , pp. e . kathleen abrahamson is an associate professor in the purdue university school of nursing, west lafayette, in. her research is focused upon health services. yun cai began her dnp at purdue university school of nursing in august of . she earned her master of science in nursing at purdue university. currently, yun is a primary care nurse practitioner. she is interested in nursing home quality improvement and dementia care. dr. richards is an assistant professor in purdue univer- sity school of nursing, west lafayette, in. her research is focused on population-based physical activity promotion and health outcomes of human-animal interaction. her research describes the individual, interpersonal, and environmental influences of physical activity. http://www.cms.gov http://refhub.elsevier.com/s - ( ) -x/sref 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http://refhub.elsevier.com/s - ( ) -x/sref http://refhub.elsevier.com/s - ( ) -x/sref http://refhub.elsevier.com/s - ( ) -x/sref http://refhub.elsevier.com/s - ( ) -x/sref http://refhub.elsevier.com/s - ( ) -x/sref http://refhub.elsevier.com/s - ( ) -x/sref http://refhub.elsevier.com/s - ( ) -x/sref http://refhub.elsevier.com/s - ( ) -x/sref http://refhub.elsevier.com/s - ( ) -x/sref http://refhub.elsevier.com/s - ( ) -x/sref k. abrahamson et al. / complementary therapies in clinical practice ( ) e krista cline received a dual-title ph.d. in sociology and gerontology from purdue university. she is currently associate professor of sociology and criminology at butler university. her research interests include the hu- man-animal bond, health and aging, obesity, and gender issues. dr. maggie o’haire is an assistant professor of human- animal interaction at purdue university. she received her bachelor of arts in psychology from vassar college in new york and her phd in psychology from the university of queensland in australia. she currently leads a program of research within the center for the human animal bond in the purdue college of veterinary medicine. her research team focuses on studying the unique and pervasive effects of interactions with animals. example projects include classroom-based, animal-assisted intervention for chil- dren with autism spectrum disorder and the effects of service dogs for veterans with posttraumatic stress dis- order and their families. 	perceptions of a hospital-based animal assisted intervention program: an exploratory study 	 . introduction 	 . statement of purpose 	 . study context 	 . methods 	 . findings 	 . . descriptions of the dogs 	 . . contact with the dogs at work 	 . . connection with the dogs outside of work 	 . . benefits 	 . . . decreasing staff stress 	 . . . providing comfort and company to patients 	 . . . promoting social interaction 	 . . drawbacks 	 . discussion 	references “predictors of depressive symptoms following the great east japan earthquake: a prospective study” predictors of depressive symptoms following the great east japan earthquake: a prospective study' the harvard community has made this article openly available. please share how this access benefits you. your story matters citation tsuboya, toru, jun aida, hiroyuki hikichi, s.v. subramanian, katsunori kondo, ken osaka, and ichiro kawachi. . “predictors of depressive symptoms following the great east japan earthquake: a prospective study.” social science & medicine (july): – . https://doi.org/ . /j.socscimed. . . . citable link http://nrs.harvard.edu/urn- :hul.instrepos: terms of use this article was downloaded from harvard university’s dash repository, and is made available under the terms and conditions applicable to open access policy articles, as set forth at http:// nrs.harvard.edu/urn- :hul.instrepos:dash.current.terms-of- use#oap http://osc.hul.harvard.edu/dash/open-access-feedback?handle=&title=predictors% of% depressive% symptoms% following% the% great% east% japan% earthquake:% a% prospective% study'&community= / &collection= / &owningcollection / &harvardauthors= b aa b e bd b b &department http://nrs.harvard.edu/urn- :hul.instrepos: http://nrs.harvard.edu/urn- :hul.instrepos:dash.current.terms-of-use#oap http://nrs.harvard.edu/urn- :hul.instrepos:dash.current.terms-of-use#oap http://nrs.harvard.edu/urn- :hul.instrepos:dash.current.terms-of-use#oap “predictors of depressive symptoms following the great east japan earthquake: a prospective study” toru tsuboya, md, phd , , jun aida, dds, mph, phd , hiroyuki hikichi, phd , sv subramanian, phd , katsunori kondo, md, phd , ken osaka, md, mph, phd , and ichiro kawachi, md, phd harvard t.h. chan school of public health, department of social and behavioral sciences, boston, usa tohoku university graduate school of dentistry, department of international and community oral health, sendai, japan chiba university, center for preventive medical sciences, chiba, japan abstract we sought to investigate prospectively the association between exposure to disaster (the east japan earthquake) and change in depressive symptoms among community-dwelling older adult survivors. we used two waves of data from the japan gerontological evaluation study (jages), an ongoing population-based, prospective cohort study in japan. a unique feature of our study was the availability of information about mental health status pre-dating the disaster. our sample comprised community-dwelling survivors aged and older, who responded to surveys in (i.e. one year before the disaster) and in (n= , ). we categorized disaster exposure according to three types of experiences: loss of family/friends, property damage, and disruption in access to medical service. our main outcome was change in depressive symptoms, measured by the -item geriatric depression scale (gds). among the participants, ( . %) reported losing a family member to the disaster, while a further ( . %) reported losing a friend. more than half of the participants reported some damage to their homes. after adjusting for demographics and baseline mental health, people whose homes were completely destroyed had significantly elevated depressive symptom scores three years later (+ . points, %ci: . , . , p<. ). disruption of psychiatric care was also associated with change in gds scores (+ . points, %ci: . , . , p<. ). by contrast, loss of family/friends was no longer associated with gds after years; + . points ( %ci: - . , . , p= . ) for loss of family, and − . points ( %ci: - . , . , p= . ) for loss of friends. three years after the disaster, survivors of the earthquake and tsunami appeared to have recovered from loss of loved ones. by contrast, property loss and disruption of psychiatry care were associated with persistent adverse impact on mental health. corresponding author: toru tsuboya, md, phd, postal address: huntington avenue, kresge building th floor, boston, massachusetts , usa, tsubo @gmail.com, phone:+ - - - , + - - - , fax: + - - - . publisher's disclaimer: this is a pdf file of an unedited manuscript that has been accepted for publication. as a service to our customers we are providing this early version of the manuscript. the manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. hhs public access author manuscript soc sci med. author manuscript; available in pmc july . published in final edited form as: soc sci med. july ; : – . doi: . /j.socscimed. . . . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t keywords japan; depression; natural disaster; disaster damage; prospective cohort study introduction previous studies have provided ample documentation of the impact of exposure to natural disasters on the mental health of survivors (fergusson et al., ; frankenberg et al., ; kumar et al., ; van griensven et al., ). personal experience of property damage, loss of family and disruption of employment each has been linked to an increased incidence of ptsd, depression and anxiety among survivors (van griensven et al., ). however, almost none of the existing studies were able to incorporate information about the mental health of survivors pre-dating the exposure to disaster. thus, it is not clear whether the symptoms of mental illness among survivors already pre-dated their experience of disaster. retrospective recall of pre-disaster mental health status is also subject to recall bias. one notable exception is a study reported by fergusson et al ( ), conducted after the canterbury earthquakes in new zealand during - . in that study, the authors took advantage of the christchurch health and development study, a -year longitudinal birth cohort ( males and females), in which pre-disaster mental health information was available among the survivors. they reported that prevalence of some types of mental disorders (major depression, posttraumatic stress disorder, other anxiety disorder, and nicotine dependence) was significantly increased with increasing exposure to the earthquakes. however, after adjusting confounders that had been assessed before the earthquake, the significant positive associations were substantially attenuated except for nicotine dependence. besides, the christchurch cohort is still relatively young (age years) and many participants have not yet accumulated substantial property (e.g. own their homes). we are unaware of studies that have focused on a population of older adults with information about mental health pre-dating the onset of disaster (which is very rare, and makes our natural experiment quite unique). in addition, few previous studies have been able to provide information on survivors for an extended period of follow-up, e.g. beyond one year after exposure to disaster. thus, the persistent mental health impacts of disaster (if any) are not well understood. to address these limitations of previous studies, we took advantage of a unique “natural experiment” (craig et al., ), afforded by the ongoing japan gerontological evaluation study (jages), a nationwide cohort of older community-dwelling adults which was originally established in to examine prospectively the determinants of healthy aging. (fujiwara et al., ; kondo, ; matsuyama et al., ; takeuchi et al., ) by chance, one of the field sites of the cohort was located in iwanuma city, miyagi prefecture, roughly km the west of the epicenter of the earthquake and tsunami. this design allowed us to conduct a follow-up study of survivors three years after the disaster. tsuboya et al. page soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t methods study population and study design we utilized two surveys waves of the jages cohort conducted in (baseline) and in (in the aftermath of the east japan earthquake). the study profile has been previously been described in detail (hikichi et al., ). the east japan earthquake and tsunami struck on march th, . iwanuma city, the field site for the present study, is a coastal municipality in miyagi prefecture in japan, located approximately km west of the epicenter of the . earthquake. a total of people have lost their lives or have been missing in iwanuma, while % of the land mass was inundated by the tsunami (see figure ) (ishigaki et al., ). the baseline survey was completed in august , months prior to the earthquake. questionnaires were mailed to every resident of iwanuma aged years or older (n= , ), inviting them to participate in the jages cohort study. the questionnaires inquired about demographics as well as the -item geriatric depression scale (gds). the response rate to the initial invitation was . % ( , / , ), which is somewhat higher than the average among comparable community surveys of this type (brick jm, ; jenkins, ; sinclair et al., ). from the , , we further excluded due to invalid id, sex or age, leading to , valid respondents in the baseline survey. among the , respondents, were excluded for the follow-up: lost their life in the disaster (n = ), death from the other (natural) causes (n = ), moved out (n = ), address unknown (n = ), and too sick to be conducted (n = ) (figure ). the number of eligible participants for the follow-up survey was , . approximately . years after the earthquake and tsunami, we mailed the follow- up survey to all survivors between oct and jan . the follow-up survey again included the -item gds, as well as questions related to personal experience of the disaster, such as property loss and the loss of loved ones. trained survey teams then visited all the households to collect the completed surveys. informed consent was obtained at the time of survey collection. the response rate to the follow-up survey was . % ( , / , ) among the eligible participants. from the , participants, we excluded due to invalid consent forms, leading to , participants at the follow-up survey. we then excluded participants who were missing or more items on the -item gds questionnaire, resulting in a final analytic sample of , . a detailed flow chart of the participant selection is presented in figure (participants flow). dependent variable: geriatric depression scale (gds) in both the and surveys, we assessed depressive symptoms using the -item geriatric depression scale, which has been previously validated (yesavage et al., ). the overall gds score is based on a linear summation of items (yes ( ) or no ( )) with higher score indicating higher depressive symptomatology. gds- has a sensitivity of % and a specificity of % to detect major depression as ascertained by a structured clinical interview, when a cutoff point of is used (lyness et al., ). the japanese version of the -item gds has been also widely used in previous studies (fujiwara et al., ; imai et al., ; makizako et al., ). among the eligible participants, ( . %) had one to seven missing data points on the gds, and we imputed the overall score based upon the tsuboya et al. page soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t average of the available items. the dependent variable in the present study was the difference in gds score between baseline ( ) and follow-up ( ), subtracting gds ( ) from gds ( ). if the value of a participant is positive, depressive symptoms of the person in got worse from . independent variable: personal experiences of earthquake and tsunami damage on the follow-up survey, each participant was asked about their personal experiences of disaster damage in the following categories: ) loss of family/friends, ) loss of pets, ) loss of/damage to property (housing and cars), ) loss of employment, and ) disruption in access to medical care. we chose these types of disaster experiences based on previous studies on mental health among survivors after natural disasters and considering the local culture (van griensven et al., ; frankenberg et al., ). ) loss of family or friends—loss of family or friends during the disaster was asked as follows: “did you lose a close relative or friend in the earthquake?” potential responses included “ . close relative, . close friend, . no”. ) loss of pets—loss of pets was asked as follows: “did you lose a dog, cat, or other pet in the earthquake?” potential responses included “ . dog, . cat, . other pet, . no, . i did not have a pet”. ) damage to/loss of property (housing and cars)—damage to housing was assessed by the following question. “how badly was your residence damaged in the earthquake?” potential responses ranged from “ . completely destroyed, . mostly destroyed, . half destroyed, . partially destroyed, . no damage”. the five categories are based on the official local government criteria (for the purposes of compensation); not based upon subjective judgment. loss of car(s) was assessed by the following question. “did you lose your car in the earthquake?” potential responses ranged from “ . yes, . no, . i did not own car(s) when the disaster happened” ) loss of employment—loss of employment due to the disaster was assessed as follows: “did your job situation change as a result of the earthquake?” potential responses ranged from “ . i lost my job, but it was later reinstated, . i lost my job, and do not currently work, . i did not work prior to the earthquake, . i work in the same job as i did prior to the earthquake, . i started a new job”. in the analysis, we combined response categories ) and ) into “loss of jobs”. ) disruption in access to health care—disruption in access to health care due to the disaster was assessed by the following question: “did you experience any disruption in access to health care? circle all that apply.” potential responses included: “ . dentistry, . internal medicine, . orthopedics, . ophthalmology, . psychiatry, . other”. in the analysis, we focused specifically on disruption in access to psychiatric care. tsuboya et al. page soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t covariates demographic characteristics (sex, age, marital status, years of education, income, body mass index (bmi), smoking and drinking habit, pre-existing psychiatric conditions and history of other diseases, frequency of informal socializing) and experiences of disaster damage (loss of family member(s), loss of friend(s), loss of pet(s), house damage, car damage, job loss, and disruption to medical care) are summarized in table / and appendix table . averages and standards deviation of change in gds are also shown in table / . the demographic characteristics (sex, age, marital status, years of education, income, bmi, smoking and drinking habit, pre-existing psychiatric conditions and history of other diseases, frequency of informal socializing) and gds score in were adjusted in the multivariable model, and the results were shown in table . statistical analysis we used a linear regression model to examine the association between experiences of the disaster and change in gds scores. changes in gds scores were entered as continuous variables. the multivariate adjusted results were expressed as non-standardized coefficients with % confidence intervals (ci) in table . all analyses were performed with sas version . statistical software (sas institute inc, cary, north carolina). we defined significance as a -sided p value <. . sensitivity analysis we conducted analyses stratified by age, sex, and past/present history of psychiatric disease in (pre-disaster) (table ). we hypothesized that these variables could potentially modify the associations between personal experiences of disaster damage and depressive symptoms. ethics statement the study was approved by the human subjects committee of the harvard t. h. chan school of public health, the ethics committee of the tohoku university graduate school of medicine, research ethics committee of the graduate school of medicine at chiba university and the research ethics committee involving human participants of the nihon fukushi university. results among the participants, ( . %) reported losing a family member, and ( . %) losing a friend. more than half of the participants reported some extent of housing damage, while approximately in ( . %) lost their car(s) (table ). compared with the human and property loss, the number of those who lost their job(s) was relatively small: ( . %). three hundred and seventeen ( . %) participants reported disruption in access to health services of psychiatry. mean (sd) of gds was . ( . ) in baseline and . ( . ) in the follow-up. the average (unadjusted) increase in depressive symptomatology between waves was . points for ”entirely destroyed” of housing; . for loss of cars; . for loss of job; . for disruption of access to psychiatric care, and . points for loss of a pet cat. tsuboya et al. page soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t table shows the multivariate adjusted associations between each type of disaster damage and change in depressive symptoms. in these models, property loss was significantly associated with worsening gds scores: . points ( %ci: . , . , p<. ) for total housing loss in comparison to those who had no damage of their house; and . points ( %ci: . , . , p= . ) for loss of car in comparison to those who had no damage of their car. loss of employment was also associated with worsening gds scores: . points ( %ci: . , . , p<. ) in comparison to those who had kept the same job. disruption of access to psychiatric care was significantly associated with worsening gds: . points ( %ci: . , . , p<. ) in comparison to those who did not report the disruption. by contrast, loss of family members was statistically significantly associated with worsening gds, however, the effect size was relatively small: . ( %ci: . , . , p= . ). table shows the stratified analyses of associations between housing loss/disruption access to psychiatry and change in depressive symptoms. the impact of housing loss on gds change was more pronounced in men, the younger old, and those with psychiatric diagnoses prior to the disaster. the interaction terms between housing loss and the stratifying variables were statistically significant in sex, but not in the other two: p for interaction was . for sex, . for age group, and . for past/present psychiatric disease. association between change in gds and disruption of access to psychiatry seemed to be stronger among those who had prior psychiatric diseases, but the interaction term was not statistically significant. discussion to our knowledge, this is the first study to utilize pre-disaster information to examine the impact of disaster damage on depressive symptoms in a community-dwelling sample of older adults. we found that loss of employment and disruption in access to psychiatric care predicts worsening of depressive symptoms up to three years after the disaster. unexpectedly, we found that personal experiences of property damage have a more pronounced and lingering impact on depressive symptoms compared to experiencing the loss of loved ones. our findings are more pronounced among male survivors compared to female survivors. our present study is consistent previous reports about the adverse mental health impacts of property damage and job loss; but our results concerning the loss of loved ones are somewhat surprising and unexpected (van griensven et al., ; zwiebach et al., ). the discrepancy may be due to differences in the age group of survivors. in our study, we examined survivors who were or older, while most previous studies focused on younger adults who have not had time to accumulate wealth or property (or who have the prospect of many years ahead to rebuild their lives). in contrast to young adulthood, the loss of family members and friends is a more normative experience as people age, and this may have contributed to a more rapid psychological adjustment in our sample. to our knowledge, few studies have examined the long-term impact of disaster damage on mental health. most studies have been conducted up to a year following the experience of disaster. arnberg et al. ( ) recently reported that exposure of tsunami was associated with an increased risk of severe psychopathology in children and adults over years tsuboya et al. page soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t independently of previous psychiatric morbidity. our results add to the evidence that survivors of natural disasters should be actively followed long-term to prevent, detect, and alleviate psychiatric disorders that might follow. a major strength of our study is the availability of information about mental health status pre-dating the disaster. to our knowledge, only one previous study by fergusson and colleagues ( ) has incorporated pre-disaster information. in that study, they found prevalence of some types of mental disorders (major depression, posttraumatic stress disorder, other anxiety disorder, and nicotine dependence) was significantly increased with increasing exposure to the earthquakes. however, after adjusting confounders that had been assessed before the earthquake, the significant positive association disappeared except for nicotine dependence. the new zealand sample was comparatively young ( years), whereas our sample comprised older individuals. thus, the two sets of studies provide complementary evidence on the impacts of disaster on mental health. given the aging of populations across the globe – combined with the rising frequency and severity of natural disasters (van der vink et al., ; van aalst, ) – it is important to understand and prepare for the impacts of disaster in this age group. we believe the effect size of disruption of access to psychiatry and destruction of houses should be crucial, because experiencing property loss was comparable to the magnitude of association between low educational attainment and depressive symptoms. (table / ). besides, point of change in -item gds corresponds approximately to effect of - weekly-sessions cognitive behavioral therapy (huang et al., ). notably, disruption of access to psychiatric care was associated a substantial increase in gds scores, over points of change in gds, and was in fact even larger in its impact than property damage (table ). this implies that special psychiatric services, such as psychological first aid (cherie castellano, ), or mobile psychiatry teams, should be a priority in the aftermath of disasters, and may be effective in alleviating the burden of mental problems following disasters. however, at the same time, this interpretation should be approach with some caution, as only participants reported interruption in psychiatric care. losing cats was significantly associated with change in gds. pet therapy might improve mental illness (moretti et al., ), and, therefore, the observed significant association might be also causal. however, losing cats would be just a proxy of losing houses or cars, because its coefficient was substantially attenuated when “losing cats” and “house damage” were adjusted in the same time (data not shown). limitations we note a number of limitations in the current study. first, experiences of disaster damage and depressive symptoms were based on self-report, and therefore, potentially subject to common method bias. we cannot exclude the possibility that individuals whose depressive symptoms increased between survey waves were also more likely to selectively recall personal experiences of damage. second, a small portion of the baseline participants ( / , ) were lost to follow-up, which may have resulted in bias. however, since individuals with worsening mental health symptoms were more likely to be lost to follow- up, we believe that this resulted in a bias towards the null. however, we believe that the tsuboya et al. page soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t actual number of individuals lost to follow up in our sample is quite low (by international standards) due to the japanese compulsory system of domiciliary registration wherein all residents are required to notify authorities of changes in address. indeed our overall follow- up rate was quite high, almost %, and thus we believe that the extent of bias induced by loss to follow-up is quite small. conclusion loss of homes, cars, jobs and disruption of access to psychiatric care were significantly associated with worsening depressive symptoms even three years after the great east japan earthquake and tsunami. on the other hand, survivors appeared to have substantially recovered following the loss of family and friends. acknowledgments we appreciate the support and cooperation of the iwanuma mayor's office, and the staff of the department of health and welfare of iwanuma city government. this work was supported by the nih (r ag ), as well as the grant-in-aid for scientific research - ( ), ? (no. ) and - (no. ) from the japanese ministry of education, culture, sports, science and technology (mext), health labour sciences research grant - (h -choju-wakate- ), and the center for well-being and society, nihon fukushi university, mext-supported program for the strategic research foundation at private universities, - . the funding sources did not have a role in the design and conduct of the study; the collection, management, analysis, or interpretation of the data; the preparation, review, or approval of the manuscript: or the decision to submit the manuscript. dr. tsuboya made the analysis plan, analyzed the data, and made a draft. dr. aida, dr. hikichi, dr. subramanian, dr. kondo, dr. osaka, and dr. kawachi conception and design, acquisition of data, analysis and interpretation of data. all authors revised the draft critically and approved the final manuscript. dr.tsuboya is a guarantor. no financial disclosures were reported by the authors of this paper references arnberg fk, gudmundsdottir r, butwicka a, fang f, lichtenstein p, hultman cm, et al. psychiatric disorders and suicide attempts in swedish survivors of the southeast asia tsunami: a year matched cohort study. lancet psychiatry. brick jm wd. explaining rising nonresponse rates in cross-sectional surveys. ann am acad polit soc sci. : – . cherie castellano ep. comparative analysis of three crisis intervention models applied to law enforcement first responders during / and hurricane katrina. brief treatment and crisis intervention. ; : – . craig p, cooper c, gunnell d, haw s, lawson k, macintyre s, et al. using natural experiments to evaluate population health interventions: new medical research council guidance. j epidemiol community health. ; : – . 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[pubmed: ] tsuboya et al. page soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t highlights • few studies have considered the mental health of survivors pre-dating the disaster. • property loss resulted in more lasting adverse impacts on mental health. • lack of access to psychiatric care was associated worsening of depressive symptoms. • these problems could be mitigated by mobile psychiatry teams after disasters. tsuboya et al. page soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t figure . a map of iwanuma. iwanuma is a coastal municipality in miyagi prefecture in japan, and is located approximately km west of the epicenter of the . earthquake. a total of people have lost their lives or have been missing in iwanuma, while % of the land mass was inundated by the tsunami. tsuboya et al. page soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t figure . participant flow in survey of and . the east japan earthquake and tsunami struck on march th, . we utilized two surveys waves of the japan gerontological evaluation study (jages), cohort conducted in (baseline) and in (in the aftermath of the east japan earthquake). tsuboya et al. page soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t tsuboya et al. page table main characteristics in and geriatric depression scale (gds) among the study participants (n= , ) n (%) gds in gds in change in gds average sd average sd average sd sex men , . . . . . . . women , . . . . . . . in total , . . . . . . age (years old) - , . . . . . - . . or older , . . . . . . . marital status married , . . . . . . . windowed . . . . . . . divorced . . . . . . . education (years) < . . . . . . . - , . . . . . . . - , . . . . . . . or more . . . . . . . equivalized household income (jpy, japanese yen) a < million , . . . . . − . . - million , . . . . . . > million . . . . . . body mass index (kg/m ) < . . . . . . . - , . . . . . . . > . . . . . . . drinking habit drinker , . . . . . . . former drinker . . . . − . . rarely drink , . . . . . . having past/present psychiatric diseases present . . . . . − . . no , . . . . . . having any chronic diseases or conditions present , . . . . . . no . . . . . . note. gds: geriatric depression scale. sd: standard deviation. a jpy=japanese yen, jpy is approximately equal to usd (us dollar) in aug . soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t tsuboya et al. page ta b le d is as te r d am ag e an d g er ia tr ic d ep re ss io n s ca le ( g d s ) am on g th e s tu dy p ar ti ci pa nt s (n = , ) n (% ) g d s i n g d s i n c h an ge i n g d s av er ag e s d av er ag e s d a ve ra ge s d l os s of f am il y an d fr ie nd s n o lo ss , . . . . . . . l os s of f am il y m em be rs . . . . . . . l os s of f ri en ds . . . . . . . b ot h . . . . . − . . l os s of p et (s ) h ad n o pe ts , . . . . . . . n o pe t lo ss . . . . . − . . l os t do g( s) . . . . . − . . l os t ca t( s) . . . . . . . l os t ot he r pe ts . . . . . − . . l os t ca t( s) & o th er p et s . . . . . . . l os t do g( s) & o th er p et s . . . . . . . l os t do g( s) & c at (s ) . . . . . − . . ( m is si ng ) . . . . . . . h ou se d am ag e e nt ir el y de st ro ye d . . . . . . . l ar ge ly d es tr oy ed . . . . . . . h al f de st ro ye d . . . . . p ar tl y de st ro ye d , . . . . . . . n o da m ag e , . . . . . − . . c ar d am ag e l os t ca rs . . . . . . d id n ot h av e ca rs a t th at t im e . . . . . . . n o da m ag e of c ar s , . . . . . . . jo b lo ss l os t jo bs , b ut h av e re st ar te d th e sa m e jo b . . . . . . soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t tsuboya et al. page n (% ) g d s i n g d s i n c h an ge i n g d s av er ag e s d av er ag e s d a ve ra ge s d h av e lo st j ob s . . . . . . . h av e no t be en w or ki ng , . . . . . . . h av e be en w or ki ng . . . . . − . . h av e st ar te d a ne w j ob a ft er t he d is as te r . . . . . . . d is ru pt io n of a cc es s to p sy ch ia tr y n o , . . . . . . . y es . . . . . . . n ot e. g d s : g er ia tr ic d ep re ss io n s ca le . s d : st an da rd d ev ia ti on . soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t tsuboya et al. page table multivariable adjusted association of each disaster damage with change in geriatric depression scale (gds) among the survivors from the disaster (n= , ) in japan characteristics coefficient se %ci p-value loss of family and friends no loss reference loss of family members . . . , . . loss of friends . . − . , . . both − . . − . , . . loss of pet(s) had no pets . . − . , . . no pet loss reference lost dog(s) . . − . , . . lost cat(s) . . . , . . lost other pets − . . − . , . . lost dog(s) & cat(s) − . . − . , . . lost cat(s) & other pets . . − . , . . lost dog(s) & other pets . . − . , . . house damage entirely destroyed . . . , . <. largely destroyed . . . , . . half destroyed . . . , . . partly destroyed . . . , . . no damage reference car damage lost cars . . . , . . did not have cars at that time . . . , . . no damage of cars reference job loss lost jobs, but have restarted the same job . . . , . . have lost jobs . . . , . <. have not been working . . . , . . have been working reference have started a new job after the disaster . . − . , . . disruption of access to psychiatry . . . , . <. note. gds: geriatric depression scale. ci: confidence interval. se: standard error. a. age (continuous), sex, marital status, education, income, self-rated health, body mass index, smoking status, drinking status, having past/present psychiatric diseases, having any chronic diseases or conditions, frequency of informal socializing, and gds score in were adjusted in the model. b. other types of disaster damage were not simultaneously included in the same model. soc sci med. author manuscript; available in pmc july . a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t a u th o r m a n u scrip t tsuboya et al. page table stratified multivariate adjusted association of selected disaster damage with change in geriatric depression scale(gds) among the survivors from the disaster (n= , ) in japan characteristics coefficient se %ci p-value p for interaction entirely destroyed stratified by sex c men . . . , . <. . women . . . , . . stratified by age in age under . . . , . <. . or older . . . , . . stratified by having psychiatric diseases in d present . . . , . . . no . . . , . <. disruption of access to psychiatry stratified by having psychiatric diseases in d present . . − . , . . . no . . . , . . note. gds: geriatric depression scale. ci: confidence interval. se: standard error. a. age (continuous), sex, marital status, education, income, self-rated health, body mass index, smoking status, drinking status, having past/present psychiatric diseases, having any chronic diseases or conditions, frequency of informal socializing, and gds score in were adjusted in the model. b. other types of disaster damage were not simultaneously included in the same model. c “sex” is not included in the analysis. d “having past/present psychiatric diseases” is not adjusted in the analysis. soc sci med. author manuscript; available in pmc july . 	abstract 	introduction 	methods 	study population and study design 	dependent variable: geriatric depression scale (gds) 	independent variable: personal experiences of earthquake and tsunami damage 	 ) loss of family or friends 	 ) loss of pets 	 ) damage to/loss of property (housing and cars) 	 ) loss of employment 	 ) disruption in access to health care 	covariates 	statistical analysis 	sensitivity analysis 	ethics statement 	results 	discussion 	limitations 	conclusion 	references 	figure 	figure 	table 	table 	table 	table jennet milk production during the lactation in a sicilian farming system | animal | cambridge core skip to main content accessibility help we use cookies to distinguish you from other users and to provide you with a better experience on our websites. close this message to accept cookies or find out how to manage your cookie settings. login alert cancel log in × × home only search content i have access to 	 	home 	log in 	register 	browse subjects 	what we publish 	services 	about cambridge core 	 cart 	 cart 	 	 	 	 access provided by 	 carnegie mellon university 	manage institution login 	logged in as: carnegie mellon university 	manage institution login 	 	 	 register 	 register 	 log in 	 	 cart hostname: page-component- d b df cc-nq h total loading time: . render date: - - t : : . z has data issue: true feature flags: { "shoulduseshareproducttool": true, "shouldusehypothesis": true, "isunsiloenabled": true, "metricsabstractviews": false, "figures": false, "newcitemodal": false, "newcitedbymodal": true } 	home 	journals 	animal 	volume issue 	jennet milk production during the lactation in a sicilian... englishfrançais animal article contents 	abstract 	references jennet milk production during the lactation in a sicilian farming system published online by cambridge university press:  october c. giosuè , m. alabiso , g. russo , m. l. alicata  and c. torrisi show author details c. giosuè affiliation: animal production section, s.en.fi.mi.zo department, university of palermo, viale delle scienze, palermo , italy m. alabiso affiliation: animal production section, s.en.fi.mi.zo department, university of palermo, viale delle scienze, palermo , italy g. russo affiliation: animal production section, s.en.fi.mi.zo department, university of palermo, viale delle scienze, palermo , italy m. l. alicata affiliation: animal production section, s.en.fi.mi.zo department, university of palermo, viale delle scienze, palermo , italy c. torrisi affiliation: asilat farm, miscarello-aranci region, milo (giarre-ct), italy corresponding e-mail address: malabiso@unipa.it 	article 	metrics article contents 	abstract 	references get access share cite abstract in italy, the interest for jennet milk production has recently developed. an -month-long experiment was carried out on a jennet farm near milo (ct), where jennets, which derived from the ragusana breed, were tested for milk yield and composition over an entire lactation period. the jennets were fed with hay and concentrate in a large paddock. from the th post-foaling day to the end of the lactation, the jennets were machine-milked twice a day with an in-between milking interval of h. the milk amount from each jennet was recorded every weeks and individual samples were collected and analyzed for fat, protein, casein, non-proteic nitrogen, lactose and somatic cell count. this study showed that jennets at sicilian latitudes are not seasonal polyestrous. the daily milk yield, the length of lactation and the milk characteristics varied depending on the foaling season. the total average milk production was ± kg in ± post-foaling days, considering two milking records per day. during the lactation, milk yield decreased constantly from . to . kg/jennet per day. when looking at the jennet milk quality during lactation, the percentage of fat and protein decreased, while the lactose percentage increased, according to a tendency apparently unique for equines when compared to the ruminants. when looking at the productive season, spring generally gave the best qualitative and quantitative results. based on these results, jennet milk yield and quality could be improved; furthermore, jennet milk production may turn out to be a profitable business. keywords jennet lactation milk yield milk composition type full paper information animal , volume , issue , october , pp. - doi: https://doi.org/ . /s [opens in a new window] copyright copyright © the animal consortium access options get access to the full version of this content by using one of the access options below. if you should have access and can't see this content please contact technical support. references aguggini, g, beghelli, v, giulio, lf . fisiologia degli animali domestici con elementi di etologia, pp. – . utet, torino, italy.google scholar alabiso m, di grigoli a, bonanno a, alicata ml and bongarrà m . effetto del diverso comportamento al rilascio del latte sulla produzione quanti-qualitativa in bovine modicane. proceedings of the th società italiana delle scienze veterinarie congress, riva del garda, italy, pp. – .google scholar aspa . commissione metodologie di valutazione della produzione quanti-qualitativa del latte. metodi di analisi del latte delle principali specie di interesse zootecnico. centro stampa universita` di perugia, italy.google scholar chiofalo b, azzara v, lotta l and chiofalo l . i parametri chimico fisici del latte di asina ragusana nel corso della lattazione. proceedings of the th nuove acquisizioni in materia di ippologia congress, campobasso, italy, pp. – .google scholar dell’orto, v, salimei, e, bontempo, v, fantuz, f, toppino, pm, contarini, g, locci, f . dairy mares’ milk: i. yield and 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international regulations for milk recording in sheep. institut de l’élevage, department génétique et controle des performances, paris.google scholar intrieri f and minieri l . sulla composizione chimica del latte di cavalla: indagini su soggetti di razza avelignese. proceedings of the th società italiana delle scienze veterinarie congress, saint vincent, italy, pp. – .google scholar malacarne, m, martuzzi, f, summer, a, mariani, p . protein and fat composition of mare’s milk some nutritional remarks with reference to human and cows milk: a review. international dairy journal , – .crossrefgoogle scholar pinto f, lestinghi a, caputi jambrenghi a, marsico g and vonghia g . conservazione e valorizzazione dell’asino di martina franca: influenza dell’integrazione alimentare su alcuni aspetti quanti-qualitativi del latte. . indagine preliminare. proceedings of the th convegno nazionale della biodiversità congress, alghero, italy, pp. – .google scholar polidori f . il latte dietetico. proceedings of aspetti dietetici nella produzione del latte, un alimento antico proiettato verso il futuro symposium, torino, italy, pp. – .google scholar salimei, e, fantuz, f, coppola, r, chiofalo, b, polidori, p, varisco, g . composition and characteristics of ass’s milk. animal research , – .crossrefgoogle scholar ullrey, de, struthers, rd, hendricks, dg, brent, be . composition of mare’s milk. journal of animal science , – .crossrefgoogle scholarpubmed wolfsont, c . increasing behavioral skills and level of understanding in adults: a brief method integrating dennison’s brain gym® balance with piaget’s reflective processes. journal of adult development , – .crossrefgoogle scholar full text views full text views reflects pdf downloads, pdfs sent to google drive, dropbox and kindle and html full text views. total number of html views: total number of pdf views: * view data table for this chart * views captured on cambridge core between september - th april . this data will be updated 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used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ companion animals and child/adolescent development: a systematic review of the evidence purewal, r., christley, r., kordas, k., joinson, c., meints, k., gee, n., & westgarth, c. ( ). companion animals and child/adolescent development: a systematic review of the evidence. international journal of environmental research and public health, ( ), [ ]. https://doi.org/ . /ijerph publisher's pdf, also known as version of record license (if available): cc by link to published version (if available): . /ijerph link to publication record in explore bristol research pdf-document this is the final published version of the article (version of record). it first appeared online via mdpi at http://www.mdpi.com/ - / / / . please refer to any applicable terms of use of the publisher. university of bristol - explore bristol research general rights this document is made available in accordance with publisher policies. please cite only the published version using the reference above. full terms of use are available: http://www.bristol.ac.uk/red/research-policy/pure/user-guides/ebr-terms/ https://doi.org/ . /ijerph https://doi.org/ . /ijerph https://research-information.bris.ac.uk/en/publications/ ad a - - c - a - d b d https://research-information.bris.ac.uk/en/publications/ ad a - - c - a - d b d international journal of environmental research and public health review companion animals and child/adolescent development: a systematic review of the evidence rebecca purewal ,*, robert christley , katarzyna kordas , , carol joinson , kerstin meints , nancy gee , and carri westgarth institute of infection and global health, and institute of veterinary science, faculty of health and life sciences, university of liverpool, leahurst campus, neston, cheshire ch te, uk; robc@liverpool.ac.uk (r.c.); carri.westgarth@liverpool.ac.uk (c.w.) department of epidemiology and environmental health, university at buffalo, farber hall, buffalo, ny , usa; kkordas@buffalo.edu school of social and community medicine, university of bristol, whatley road, bristol bs ps, uk; carol.joinson@bristol.ac.uk school of psychology, university of lincoln, brayford pool, lincoln, lincolnshire ln ts, uk; kmeints@lincoln.ac.uk department of psychology, state university of new york, fredonia, ny , usa; nancy.gee@fredonia.edu waltham centre for pet nutrition, waltham-on-the-wolds, melton mowbray, leics le rt, uk * correspondence: r.purewal@liverpool.ac.uk; tel.: + - - - academic editor: paul b. tchounwou received: november ; accepted: february ; published: february abstract: childhood and adolescence are important developmental phases which influence health and well-being across the life span. social relationships are fundamental to child and adolescent development; yet studies have been limited to children’s relationships with other humans. this paper provides an evidence review for the potential associations between pet ownership and emotional; behavioural; cognitive; educational and social developmental outcomes. as the field is in the early stages; a broad set of inclusion criteria was applied. a systematic search of databases and grey literature sources found twenty-two studies meeting selection criteria. the review found evidence for an association between pet ownership and a wide range of emotional health benefits from childhood pet ownership; particularly for self-esteem and loneliness. the findings regarding childhood anxiety and depression were inconclusive. studies also showed evidence of an association between pet ownership and educational and cognitive benefits; for example, in perspective-taking abilities and intellectual development. evidence on behavioural development was unclear due to a lack of high quality research. studies on pet ownership and social development provided evidence for an association with increased social competence; social networks; social interaction and social play behaviour. overall, pet ownership and the significance of children’s bonds with companion animals have been underexplored; there is a shortage of high quality and longitudinal studies in all outcomes. prospective studies that control for a wide range of confounders are required. keywords: pet ownership; human-animal interaction; review; child development; adolescent development . introduction childhood and adolescence are crucial life phases in their contribution to the quality of health, emotional well-being, learning and behaviour across the life span [ ]. relationships with others are fundamental contributors to child and adolescent development according to relationship psychology [ ] and attachment theory [ ]. yet, studies of child development have largely been limited int. j. environ. res. public health , , ; doi: . /ijerph www.mdpi.com/journal/ijerph http://www.mdpi.com/journal/ijerph http://www.mdpi.com http://www.mdpi.com/journal/ijerph int. j. environ. res. public health , , of to children’s relationships and interactions with other humans. however, animal ownership is common. recent figures indicate that % of u.s. households [ ] and % of british households [ ] include at least one companion animal. moreover, epidemiological studies suggest that pets are more likely to be found in households with children than in any other household type [ – ]. although pet ownership and children’s bonds with companion animals may have the potential to positively influence child and adolescent development, these relationships have received little attention and a need for research in this area has been recognized [ , ]. considering that pet ownership also pertains risks, such as zoonoses, bites and asthma/allergies [ ], it is important that the impact of pet ownership on childhood development is investigated in detail. interactions with animals may affect several aspects of human development: emotional, behavioural, cognitive, educational and social. companion animals (including horses, dogs, cats, rabbits and other rodents) have the potential to promote healthy emotional youth development in many ways, as shown by research in human-animal interactions (hai) (the mutual and dynamic relationships between people and animals and the ways in which these interactions may affect physical and psychological health and well-being of both people and their pets [ ]). this paper uses the term “youth” development to refer to all age ranges within infancy ( – years), early childhood ( – years), later childhood ( – years) and adolescence ( – years). there is growing evidence that children turn to their pets for comfort, reassurance and emotional support when feeling anger, sadness, or happiness [ – ]. thus, it is plausible that companion animals may have the potential to encourage better emotional health and reduce anxiety and depression. physiological mechanisms, such as activation of the oxytocin system may partly explain this reduction of psychological stress for humans who are in contact with animals [ ]. however, it is important to recognize that pet attachment may be more important in exerting these potential effects than pet ownership. according to attachment theorists, when attachment behaviours are consistently met by the primary caregiver, children form secure internal working models (a cognitive framework consisting of mental representations for understanding the world, self and others) that are foundational for their ability to make affectionate bonds with others and to create and maintain close relationships [ ]. although psychological theories of attachment concentrate on attachment between humans, research has demonstrated that children display attachment behaviours towards their pets [ ]. because companion animals both give and receive affection, they can contribute to and partially fulfil attachment needs; therefore, the developmental importance of bonds that children and adolescents form with animals should not be overlooked [ , ]. in addition, children who develop poor parental attachment tend to nurture internal working models of distrust with others, insecurity, separation anxiety, low self-esteem, and a propensity for loneliness [ – ]. if children are able to develop secure attachment behaviours with their pets as a substitute, secure internal working models may still develop to some extent [ ]. whether pet attachment and ownership has any impact on child and adolescent development is currently unclear. self-psychology (self-esteem, self-cohesion and self-acceptance) is another important aspect of youth development. particularly in early and pre-adolescence, developmental changes in self-esteem have a significant impact and fluctuate prominently, with large decreases in self-esteem during transition to adolescence [ ]. it has been suggested that if companion animals provide support for self-esteem, their greatest influence will be on youths as they approach adolescence (coinciding with increasing experiences of uncertainty) and at this time they may have a higher need for the emotional support they derive from companion animals [ ]. also, during this period cognitive changes in thinking about the self and others, as well as relationships with significant others, such as parents and peers (and perhaps pets), are most common and can indirectly affect self-esteem [ ]. if companion animals provide social support [ ] and act as catalysts for human social interactions [ ], they may reduce loneliness and increase self-esteem. companion animals have been found to rival and even surpass humans ability to provide important self-object needs, such as self-cohesion, self-esteem, calmness, soothing, and acceptance [ ]. increased self-esteem and self-worth may result in further benefits for individuals with anxiety, depression, behavioural problems and educational attainment. int. j. environ. res. public health , , of however, whether causality can be implied to a link between companion animals and child or adolescent self-psychology is yet unknown. companion animals may also influence cognitive development. it has been suggested that companion animal ownership may facilitate language acquisition and potentially enhance verbal skills in children [ ]. this could occur as a result of the companion animal functioning both as a patient recipient of the young child’s babble and as an attractive stimulus, eliciting verbal communication from young children in the form of praise, orders, encouragement, and punishment [ ]. in addition, although not empirically tested, the pet may also serve as a subject of conversations that stimulate vocabulary building, when caregivers and children talk about what the pet is doing. melson [ ] reports evidence that companion animals may stimulate a young child’s cognitive growth through curiosity and learning, while also providing emotional support and unconditional positive regard. melson [ ] stated that for many children, companion animals are likely to be powerful motivators for learning, perhaps due to children learning and retaining more about subjects they are more emotionally invested in, and due to learning being optimized when it occurs within meaningful relationships. the presence of animals has been shown to elicit immediate positive effects in testing situations of cognition such as memory, categorization and attention [ – ] and studies on language, literacy, and reading ability have also shown a similar positive influence of animal presence [ – ]. it has been speculated that animal interaction may provide opportunities to improve cognitive executive functions (efs) (mental processes that form the basis for planning, attention, memory and self-control) through stress reduction and social support which in turn can affect behaviour and improve academic outcomes [ ]. thus it could be plausible that the long-term presence of pets at home will have tangible influences on children’s cognitive development and educational outcomes. however, the quality of the existing evidence has not yet been reviewed to infer any conclusions. most research to date addressing the impact of pets on human health has focused on adults. less is known about the role pets play in the lives and wellbeing of children and youths, and if pet ownership may provide scaffolding in child development. as outlined above, there is theoretical potential for the role of pets in child and adolescent development, which suggests these relationships are worth exploring further. however, the existing evidence has not been systematically reviewed to identify particular strengths or gaps in knowledge, nor as to whether causality can be implied. due to study design and quality this is a complex task. therefore the objective of this systematic review was to determine the evidence base for the impact of pet ownership and pet attachment on childhood and adolescent development. a broad range of outcomes were reviewed, including emotional, behavioural, cognitive, educational and social developmental. recommendations for future research are provided to help advance the field of child development and hai research. . materials and methods literature searches of journal articles published between and (as of june ) were conducted in databases psycinfo, cinahl, pubmed, medline, web of science, sciencedirect and grey literature sources. key terms used in searches included pet-related keywords (pet, pet ownership, dog, cat, dog ownership, companion animal, and human animal interaction) and were crossed with developmental-related keywords (child development, adolescent development, psychological, behavioural, educational, cognitive, language and social development, anxiety, depression, self-esteem, loneliness, emotional health). websites on human-animal interaction were reviewed for possible research articles, including https://www.waltham.com/waltham-research/hai-research/ and https://habricentral.org/resources/browse/journalarticles. in addition, reference lists from relevant journal articles were scanned. it is still possible that evidence remains in unfound grey literature. the inclusion criteria for the collection of articles included: literature that investigated the effects of pet ownership on emotional, cognitive or behavioural development in children and adolescents https://www.waltham.com/waltham-research/hai-research/ https://habricentral.org/resources/browse/journalarticles int. j. environ. res. public health , , of without developmental disabilities (infancy up to years). only articles written in english were included. with the aim of carrying out a broad review of the current relevant literature, restrictions for inclusion were limited; papers were not excluded based on study design and methodology. initially, abstracts were reviewed for study selection by the primary author. research excluded on the basis of content and deemed not relevant to the aim of this paper included animal assisted therapy (aat), therapy and classroom animals, pets and their effect on physical health (asthma/allergy or other chronic illnesses), ethical and moral development. the studies were then assessed by the primary author against the ocebm (oxford centre for evidence-based medicine) levels of evidence [ ] to take into account the risk of bias and quality of evidence on which conclusions are based, although no study was excluded based on quality alone due to large gaps in current evidence and poor availability of good-quality studies within each outcome (refer to tables and for details of classification). table . oxford centre for evidence-based medicine levels of evidence. level of evidence description level i systematic review of randomized controlled trials level ii randomized trials level iii non-randomized controlled cohort/follow-up studies level iv case-series, case-control studies level v expert opinion/mechanism-based reasoning level i = highest evidence (lowest potential for bias); level v = lowest evidence (greatest potential for bias). . results the initial literature searches returned results. grey literature searches found an additional references totalling publications (figure ). forty-one publications remained after the examination of studies against the inclusion criteria. after removing duplicates and the studies not fitting the criteria, studies remained for review. int. j. environ. res. public health , , of included. with the aim of carrying out a broad review of the current relevant literature, restrictions for inclusion were limited; papers were not excluded based on study design and methodology. initially, abstracts were reviewed for study selection by the primary author. research excluded on the basis of content and deemed not relevant to the aim of this paper included animal assisted therapy (aat), therapy and classroom animals, pets and their effect on physical health (asthma/allergy or other chronic illnesses), ethical and moral development. the studies were then assessed by the primary author against the ocebm (oxford centre for evidence-based medicine) levels of evidence [ ] to take into account the risk of bias and quality of evidence on which conclusions are based, although no study was excluded based on quality alone due to large gaps in current evidence and poor availability of good-quality studies within each outcome (refer to tables and for details of classification). table . oxford centre for evidence-based medicine levels of evidence. level of evidence description level i systematic review of randomized controlled trials level ii randomized trials level iii non-randomized controlled cohort/follow-up studies level iv case-series, case-control studies level v expert opinion/mechanism-based reasoning level i = highest evidence (lowest potential for bias); level v = lowest evidence (greatest potential for bias). . results the initial literature searches returned results. grey literature searches found an additional references totalling publications (figure ). forty-one publications remained after the examination of studies against the inclusion criteria. after removing duplicates and the studies not fitting the criteria, studies remained for review. figure . prisma (preferred reporting items for systematic reviews and meta-analyses) flow diagram. among the selected studies, which commonly reported on more than one outcome, reported on the effects of pet ownership on emotional health, five on behavioural development, three on cognitive development, four on educational outcomes, and four on social development. of the studies, reported cross-sectional data and only two reported longitudinal data on the impact of pets on youth development; a further one used mixed methods, and six qualitative studies were included. figure . prisma (preferred reporting items for systematic reviews and meta-analyses) flow diagram. among the selected studies, which commonly reported on more than one outcome, reported on the effects of pet ownership on emotional health, five on behavioural development, three on cognitive development, four on educational outcomes, and four on social development. of the studies, reported cross-sectional data and only two reported longitudinal data on the impact of pets on youth development; a further one used mixed methods, and six qualitative studies were included. int. j. environ. res. public health , , of bias was determined based on the oxford centre for evidence-based medicine levels of evidence criteria [ ]. ocebm levels of evidence rankings were as follows: twenty papers were ranked level iv, and two papers were ranked at level iii. specific details of the literature can be found in table . the majority of the studies were observational cross-sectional questionnaire surveys, or qualitative interviews, therefore were not further evaluated on their methodological quality as they are already considered low or very low levels of evidence according to ocebm . refer to figure for a graphical representation of study design and risk of bias. meta-analysis was not appropriate due methodological differences and the number of different outcomes reported. int. j. environ. res. public health , , of bias was determined based on the oxford centre for evidence-based medicine levels of evidence criteria [ ]. ocebm levels of evidence rankings were as follows: twenty papers were ranked level iv, and two papers were ranked at level iii. specific details of the literature can be found in table . the majority of the studies were observational cross-sectional questionnaire surveys, or qualitative interviews, therefore were not further evaluated on their methodological quality as they are already considered low or very low levels of evidence according to ocebm . refer to figure for a graphical representation of study design and risk of bias. meta-analysis was not appropriate due methodological differences and the number of different outcomes reported. figure . harvest plot showing evidence for the impact pets have on categories of child and adolescent development. the table consists of eight rows (one for each dimension of development) and three columns (showing the differential effects of the evidence in each category). each study is represented by a bar in each row; studies can be identified by reference number. statistically significant effects (use of p-values) are indicated with solid blue bars, and studies with no confidence intervals and p-values reported are striped bars. the quality of study design is indicated by the height of the bar as categorised by ocebm level of evidence . each bar is annotated with marking to show risk of bias. figure . harvest plot showing evidence for the impact pets have on categories of child and adolescent development. the table consists of eight rows (one for each dimension of development) and three columns (showing the differential effects of the evidence in each category). each study is represented by a bar in each row; studies can be identified by reference number. statistically significant effects (use of p-values) are indicated with solid blue bars, and studies with no confidence intervals and p-values reported are striped bars. the quality of study design is indicated by the height of the bar as categorised by ocebm level of evidence . each bar is annotated with marking to show risk of bias. int. j. environ. res. public health , , of table . evidence for the impact pets have on child and adolescent development. reference no. topic first author (year) ocebm level ( ) type of animal sample size participant age participant gender study type/design confounding considered? outcome [ ] emotional health (depression) rhoades ( ) iv dog ( %), cat ( %), hamster, rat, chinchilla, fish, iguana years female male cross-sectional survey control group used. yes pet owning homeless youths reported fewer symptoms of depression and loneliness than their non-pet owning peers. [ ] emotional health/ behavioural/social/ cognitive development gadomski ( ) iv dog – years female male cross-sectional survey control group used yes having a pet dog in the home was associated with a decreased probability of childhood anxiety in some components (panic, social and separation anxiety) of the scared- (screen for child anxiety related emotional disorders). however, no difference was found between dog owning and non-dog owning children in their histories of mental health problems. nor were there significant effects of pet ownership in childhood social, emotional, and behavioural development. [ ] emotional health (loneliness, attachment, social anxiety) vidovic ( ) iv dog ( . %) cat ( . %) other ( . %) – years female male cross- sectional, correlational design control group used no children who scored higher than average on the attachment to pets scale showed significantly higher scores on empathy and prosocial orientation scales. pet owners, regardless of age, were not significantly lonelier than non-owners, nor were they socially more anxious. [ ] emotional health mathers ( ) iii dog, cat, horse or pony and other – years female male cross-sectional data from longitudinal school-based population study yes neither owning a pet nor time spent caring for/playing with a pet appeared to be related to better adolescent emotional health, social development or well-being. neither did they contribute to negative outcomes. these findings may not apply to other (younger) age groups with a typically higher level of interaction with their pets. [ ] emotional health (loneliness) rew ( ) iv all – years – years female male female male “both” qualitative focus groups qualitative interviews no dogs or animal companions are used as a coping strategy for loneliness. vulnerable adolescents who are homeless often recognize the therapeutic value of pets. [ ] emotional health (loneliness, social support) black ( ) iv dogs ( %), cats ( %), horses ( %) rodents and reptiles ( %) – years female male cross-sectional survey control group used no high school student pet owners reported less loneliness than non-pet owners. companion animal attachment was positively related to the numbers in the social support network. int. j. environ. res. public health , , of table . cont. reference no. topic first author (year) ocebm level ( ) type of animal sample size participant age participant gender study type/design confounding considered? outcome [ ] emotional health (self-esteem) arambasic ( ) iv dog, cat and other (birds, fish, rodents and turtles) – years female male cross-sectional survey control group used yes pet ownership had no significant impact on the self-esteem of war-traumatized children. self-esteem of pet owners did not differ from self-esteem of non-pet owners, and the type of pet owned also had no effect on self-esteem. [ ] emotional health (self-esteem, self-concept) van houtte ( ) iv all – years female male cross-sectional survey control group used yes higher self-esteem was reported in pet owners than in non-pet owners, as was a higher autonomy, and self-concept. attachment to animals was not found to be higher in the pet-owning group and greater attachment to animals was not found to be related to higher scores on the dependent measures. [ ] emotional health (self-esteem) bryant ( ) iv all – years not reported qualitative interviews principal component factor analysis no children felt their companion animals benefited them in factors: ( ) mutuality (reciprocity in the caring and loving between pet and child); ( ) enduring affection (even if the child misbehaves the pet will still love him or her); ( ) self-enhancing affection (the child–pet relationship is perceived by children as one that makes them feel good about themselves and imparts a sense of importance) and ( ) exclusivity of the child–pet relationship [ ] emotional health (self-esteem) triebenbacher ( ) iv all – years female male cross-sectional survey control group used no no direct relationship between levels of self-esteem and pet ownership in school children. an indirect relationship was found between pet ownership and self-esteem mediated by attachment to companion animals. as with other components of psychological health, there may be a relationship between levels of attachment to one’s pet and self-esteem benefits accrued. [ ] emotional health (self-esteem/social support) mcnicholas ( ) iv all – years female male qualitative interviews no pets were often ranked higher than certain kinds of human relationship, and featured prominently as providers of comfort, esteem support and confidantes for a secret. dogs and cats offer special relationships for provision of psychological forms of support but not for the more practical problems a child might have to deal with. the fact that cats and dogs frequently ranked higher than many human relationships suggests the value that children place on their pets and the functions they serve. int. j. environ. res. public health , , of table . cont. reference no. topic first author (year) ocebm level ( ) type of animal sample size participant age participant gender study type/design confounding considered? outcome [ ] emotional health (confidence, tearfulness, self-esteem) paul ( ) iii dog – years female male prospective questionnaire survey control group used yes higher levels of attachment to the dog were positively associated with changes in confidence by the month follow-up, and negatively associated with changes in tearfulness or weepiness by the months follow-up. the positive association between dog attachment and subject children’s confidence (at the months follow-up) and its negative association with tearfulness (at the months follow-up) were more consistent with the findings of previous studies which suggest that pet keeping can be associated with higher levels of self-esteem in some children [ ] emotional health (self-esteem/stress) covert ( ) iv all – years not reported qualitative interview mixed methods no early adolescent animal owners had higher self-esteem than non-animal owners. adolescents felt they gained responsibility (rabbit/hamster), and friendship/love/fun (dog, horse and fish/bird) from pet ownership. early adolescents used pets for stress reduction. [ ] emotional health (self-concept) poresky ( ) iv all undergraduate students – years female male cross-sectional survey no self-concepts of undergraduates were related to the age when they had their first pet. total positive self-concept scores were higher if participants were under years or over years old than if they were between and years old when they had their st pet. similar results were found for the social subscales. [ ] emotional health (self-concept and psychosocial development) winsor ( ) iv goat – years female male qualitative interviews no goat ownership enabled children to create positive images of self and life—deriving emotional benefits. goat ownership provides orphaned and vulnerable children with opportunities for positive social participation and community engagement that can facilitate children’s resilience and wellbeing. [ ] emotional health (psychosocial development) davis ( ) iv dog – years female male cross-sectional survey no reasons for acquiring a dog centred on the companionship and emotional dimensions of pet ownership. it appears that the preadolescent does not actually assume a large proportion of daily, routine pet care responsibility, instead they acquire a pet dog for companionship and emotional dimensions of pet ownership. int. j. environ. res. public health , , of table . cont. reference no. topic first author (year) ocebm level ( ) type of animal sample size participant age participant gender study type/design confounding considered? outcome [ ] cognitive development maruyama ( ) iv all – years female male mixed methods cross-sectional survey qualitative interviews no students who showed stronger attachment with their pets had higher levels of social cognitive development than students who showed weaker attachment with their pets. students whose parents show more effective guidance on pet care have more advanced skills of thinking and solving problems in flexible manner than students who do not receive any or less guidance on pet care at home. [ ] educational (biological knowledge/ psychological reasoning) geerdts ( ) iv dog and cat – years female male observations, cross-sectional survey and experimental tasks no both and -year-olds with pets were more likely to attribute biological properties to animals than those without pets. both older and younger children with pets showed less anthropocentric patterns of extension of novel biological information. the results suggest that having pets may facilitate the development of a more sophisticated, human-inclusive representation of animals. [ ] educational (biological knowledge) prokop ( ) iv all – years female male experimental task yes experiences with rearing pets significantly contributed to children’s knowledge about animal’s internal organs. children who reported keeping or more animals acquired better scores than children keeping only or no animals. [ ] educational/ emotional health svensson ( ) iv dog and cat – years female male qualitative interviews no the pet supports the child in the learning and development process by (l) developing empathy and emotions; ( ) being good at school-related tasks. pets provide children with positive experiences and a sense of feeling good. [ ] social development/ educational/ cognitive development poresky ( ) iv all – years not reported cross-sectional survey /interview yes developmental benefits were primarily in the children’s social domain including social competence, empathy, and pet attitudes. “pet bonding“ appeared to be a stronger determinant of the pet associated benefits than “pet ownership“. children with companion animals and a better home environment showed higher age-adjusted child development scores. intellectual development benefits were also associated with the strength of the bond between the child and his/her pet. self- reliance and independent decision skills were higher in the children who have pets. [ ] socio-emotional/ behavioural development melson ( ) iv all , , years not reported cross- sectional survey/ individual interview no among kindergarten children, perceived competence was positively and significantly associated with diverse dimensions of attachment to the pet. this was not found in older children. pet attachment was higher for older children and those whose mothers were employed. int. j. environ. res. public health , , of . . emotional health outcomes nineteen of the studies were devoted to children’s emotional health. a wide range of emotional health benefits from childhood pet ownership were identified. . . . anxiety two studies measured anxiety as an outcome in youth pet ownership. having a pet dog was associated with a decreased likelihood of general anxiety ( % of children with dogs met the clinical cut-off value for anxiety compared with % children without dogs) as measured by commonly used and validated mental health assessment tools, specifically panic (“my child gets really frightened for no reason at all”), separation anxiety (“my child is afraid to be alone in the house”) and social phobia/anxiety (“my child is shy”), in an american study of children aged – -years in a paediatric primary care setting [ ]. however, no evidence of a difference was found for generalized anxiety (“people tell me that my child worries too much”) and significant school avoidance (“my child is scared to go to school”). in contrast, in a croatian study of – -year-old children, pet owners (dog and cat) had no difference in validated social anxiety measures compared to non-pet owners [ ]. in sum, these studies illustrate some potential of pet dogs to prevent child and adolescent anxiety, specifically separation and social anxiety disorders, but the small number of studies and mixed results warrant further research. whether pets can reduce more general child anxiety is unknown. . . . depression there is again a marked lack of research focusing on the effects of pet ownership on depressive symptoms in children and adolescents. findings of the studies included in this review should be interpreted with caution; there is likely to be an indirect effect of pet ownership on depression, perhaps mediated by self-esteem or loneliness/social isolation. in one study, pet owning homeless adolescents utilizing two los angeles drop-in centres reported fewer symptoms and lower average scores of self-reported depression measured by the -item centre for epidemiological studies depression scale (ces-d) (average score of . ) in comparison to non-pet owning peers ( . ) [ ]. however, data from an australian school-based population study show pet-owning youths of similar ages ( – years) did not have better self-reported emotional health or well-being, suggesting findings may be different in non-homeless youths [ ]. the potential protective effects of pets may also differ by age group. prospective research in – -year-olds found that high levels of attachment to a pet dog were negatively associated with maternal reports of tearfulness and weepiness at a months follow up (p < . ) [ ]. however, the impact of dog ownership on depressive symptoms in younger children measured by the pediatric symptom checklist (internalizing symptoms subscale) showed no significant effects, and in addition no difference was found between dog-owning and non-dog-owning children in their histories of diagnosed mental health problems [ ]. therefore it could be speculated that the relationship with the animal may be of more importance in conferring psychological benefits than pet ownership alone. . . . self-esteem nine studies investigated the impact of pets on the self-esteem and self-concept among youths. no effect on self-esteem was found in pet-owning war-traumatized children ( – years) in croatia using the croatian version of rosenberg’s self esteem scale (ses) [ ]. in the same study, the type of pet owned had no effect either on validated self-esteem measures. in a different study of school children aged – years, children’s attachment to pets mediated the relationship between self-esteem as measured using validated self-report measures [ ]. therefore, there may be a relationship between the level of attachment to one’s pet and self-esteem benefits accrued. in addition, prospective research found (using maternal reported data) that higher levels of children’s ( – years) attachment to a int. j. environ. res. public health , , of pet dog were positively associated with changes in their confidence level (p < . ) over a months period [ ]. in contrast, in a mixed-methods study of children aged – years, pet owners in fifth (m = . ) and sixth grade (m = . ) reported higher levels of self-esteem than non-pet owners (m = . , m = . ) (lower mean indicative of greater self-esteem) (p < . ) and pet owning sixth graders had higher self-concept scores in comparison to non-pet owners in the same grade (pet owners: m = . , non-pet owners: m = . ) (p < . ) [ ], even though greater attachment to pets was not related to self-esteem or self-concept. however, in the same study, children aged – did not differ in terms of self-esteem compared to non-pet owners, suggesting that pets exert their greatest influence during pre-adolescence and adolescence [ ]. other studies also indicate that pet ownership alone is sufficient to have a positive effect on self-esteem or self-concept, independent of pet attachment. among – -year-olds, qualitative research supports the finding companion animals increase child and adolescents self-esteem and self-enhancing affection—the perception that the child-pet relationship imparts a sense of self-importance and makes them feel good about themselves [ ]. further qualitative data supports this. in a study of – -year-old children examining representations of social support from companion animals using a story-based methodology, relationships with pets were ranked higher than human relationships by children as providers of both self-esteem and support [ ]. generally, dogs and cats were deemed better providers of psychological support as they consistently achieved higher rankings than many of the child’s human relationships, such as making one feel better about oneself, but not for practical problems children may have to face. furthermore qualitative study of early adolescents ( – years) found pet owners to have higher self-esteem than non-pet-owning peers amongst other pet-owning benefits such as friendship and stress reduction [ ]. importantly, a long term effect may be present; the self-concept of undergraduate students ( – years) was related to the age they were when they had their first pet [ ]. self-concept scores of undergraduate students were higher if participants were in early childhood (below years old) (m = . ) or in adolescence (over years old) (m = . ), than if they were in middle childhood (between and years old) (m = . ) when they owned their first pet. the psycho-social wellbeing of youths due to goat ownership has been examined in western kenyan culture. a qualitative study using thematic analysis found that after orphaned – -year-old children were given goats to care for, the development of pride, self-concept and self-worth was much improved due to goat ownership [ ]. owning goats, which are typically kept as property rather than pets, enabled children to create positive images of the self and of life, increased resilience and coping skills and increased social participation within the community. however, it must be recognised that goat ownership in this case may imply an increase in wealth therefore child welfare may not have been directly affected by interaction with the animals, but instead by an escape from poverty. . . . loneliness loneliness is likely a precursor for anxiety, depression and low self-esteem. there is some evidence that pet ownership may protect youths from loneliness and social isolation, and therefore may help to prevent depression. pet-owning homeless youths aged – years reported fewer symptoms of both loneliness quantitatively (ucla loneliness scale score of . , compared to . among non-pet owners) [ ] and qualitatively [ ] than their non-pet owing peers in addition to reduced symptoms of depression. a large proportion of these youths had pet dogs ( %) and other companion animals, which they recognized as a coping strategy for loneliness due to their therapeutic nature and value [ ]. the protective impact of pet ownership on loneliness has also been observed in less vulnerable populations. for example, high school students ( – years) who owned a pet reported significantly lower scores of loneliness (mean score of . ) than non-pet owners ( . ) using validated scales [ ], regardless of ethnicity, gender, age, and family composition. in addition, loneliness scores were not affected by length of relationship with the pet or the number of pets owned. companion animal attachment was positively related to the number of humans in the students’ social support network, int. j. environ. res. public health , , of suggesting that pet attachment may play an important role as a predictor. however, another study using validated measures of socio-emotional development of children aged – years found that pet owners were no more or less lonely than non-pet owners, although they did show a high degree of emotional closeness to their pets [ ]. the impact of pet ownership on loneliness in younger children has not been investigated. . . behavioural outcomes there is mixed evidence on whether pet ownership affects behavioural outcomes in children or adolescents as shown in figure . amongst u.s. kindergarten children aged years, perceived competence (cognitive competence, physical competence, peer acceptance and maternal acceptance) measured by parental report, was positively associated with pet attachment [ ]. however, in the same study among older children ( years and above), attachment to pets and perceived competence were generally unrelated. in a uk prospective follow up study, mixed equivocal findings were demonstrated in middle childhood ( – years). findings suggest that behaviour improves when families first acquire a pet dog, but does not differ from non-dog-owning children longitudinally; dog owning children were reported to be less naughty, less argumentative, better behaved, and more co-operative by their mothers at the month follow-up after acquiring a pet dog than non-dog owners, but there were no differences thereafter at the and months follow ups [ ]. in addition, and perhaps surprisingly, caring behaviour was reported to decrease in dog-owning children in that study; however, it was not specified who, pets or humans, were the recipients of the caring behavior. similarly, an american study of children in a paediatric primary care setting found no differences in the behaviour of dog owning children and non-dog owners aged – years measured by the strengths and difficulties questionnaire [ ]. in contrast, three other studies demonstrated how pet ownership increased behaviours of responsibility. qualitative data from homeless youths suggests that dogs provide the opportunity to be responsible and care for another being, which in turn promoted healthier self-care choices and decision-making, for example, less alcohol consumption and improved financial choices [ ]. finally, a significant main effect was found (p = . ) for pet owners aged – years old showing greater autonomy (third grade m = . , fourth grade m = . , fifth grade m = . , sixth grade m = . ) than non-pet-owning children (third grade m = . , fourth grade m = . , fifth grade m = . , sixth grade m = . ) (lower mean indicative of greater autonomy). explicitly, pet-owning individuals were more able to see their parents in roles other than the parental role and thus were deemed as more autonomous than non-pet owners [ ]. the study suggested that pet ownership has the potential to foster the development of autonomous characteristics such as responsibility and self-reliance [ ]. . . cognitive outcomes three studies have addressed the impact of pet ownership on child and/or adolescent cognitive development. a mixed methods thesis paper found that – -year-old students with a stronger attachment to their pets had higher levels of validated social-cognitive development scores, for example in perspective-taking abilities, in comparison to students with a weak attachment to their pets (p < . ) [ ]. however, no comparisons with non-pet owners were made. pet care guidance also played a role; in the same study, students whose parents displayed more effective guidance of pet care showed stronger attachment with their pets (m = . ) than students who received less or no parental guidance on pet care at home (m = . ), and had more advanced skills of cognition and flexible problem-solving than students who received little or no guidance (p < . ) [ ]. however, in a cognitive subscale of attention (pediatric symptom checklist ) no differences were found when comparing dog-owning children to non-dog owners aged – years [ ]. lastly, research on companion animal bonding and young children’s social development found higher scores on parent reports of self-reliance and independent decision skills in strongly bonded pet-owning children int. j. environ. res. public health , , of compared to weak and moderately bonded pet-owning children, and non-pet-owning children (p < . ) [ ]. . . educational outcomes four studies examined the impact of pets on educational outcomes. pets may be useful in the engagement of both verbal and physical reciprocal behaviours. in a study investigating the effects of exposure to animals on children’s biological concepts, – -year-old children with pets were more likely to attribute biological properties to animals than those without pets, and showed less anthropocentric patterns of extension of novel biological information, suggesting that having pets increases children’s knowledge of biology [ ]. thus, pet ownership could facilitate the development of a more sophisticated, human-inclusive representation of animals in children [ ]. similarly, – -year-old children who owned two or more pets scored better on factual knowledge of animal anatomy than non-pet owners [ ]. furthermore, a swedish study including qualitative interviews regarding the impact of pets on children’s development and desire to learn (“what can you learn from your pet?” and “what can your pet teach you?”) showed that owning dogs and cats may facilitate – -year-old children’s learning and development process. specifically, pet ownership aided the learning process in two sub-categories: . developing empathy and emotions, and . being good at school-related tasks [ ]. pets provided children with positive experiences and a sense of feeling good whilst increasing their knowledge of social behaviour. exemplified sentiments expressed by many children in this study state “an animal listens only to you and gives you their full attention”. such attention, in turn, may give children a sense of importance, satisfaction and a desire to learn more [ ]. finally, an early study of receptive vocabulary skills found bonding with a pet among – -year-old children resulted in higher verbal intelligence scores in children moderately bonded to their pets (m = . ) in comparison to non-pet-owning children (m = . ) [ ]. no research has been carried out to investigate the impact of pet ownership on later adolescent educational outcomes. . . social development outcomes the role of pet ownership and bonding with a pet among the social development of – year olds children has been evaluated by parental reports [ ]. it was concluded that young children derive developmental benefits (social competence, empathy, and more positive attitudes toward pets) from their interaction with their companion animals. bonding with pets appeared to be a stronger determinant of these associations than pet ownership. taken together, children who bonded well with pets and children with better home environments had higher age-adjusted child development scores. in contrast, one study showed that pet ownership might actually be detrimental to children’s social development, and may even reduce levels of social interaction in some children [ ]. in a prospective study investigating the effects of obtaining new pet dogs, children’s attachment to pets at the months follow up was associated with increases in the amount of time spent alone between baseline and months (p < . ), and inversely associated to changes in children’s time spent with family (p < . ) and friends (p < . ), suggesting a that strong bond with a dog may result in less time spent with others. however, the study does not examine the quality of interactions; it cannot be assumed that quantity of time spent in social relationships with humans alone determines the quality of social interaction. a different study showed no evidence of an impact of dog ownership on social externalizing outcomes (such as sharing and fighting behaviour, and understanding others feelings) in children aged – years [ ]. again, no effects of pet ownership on social measures were found in – -year-old adolescents measured by the pediatric quality of life inventory which assesses social functioning and psychosocial health summary scores [ ]. . discussion the impact of pet ownership on child and adolescent development is a promising area of research but current evidence base does not permit firm conclusions. this paper provides a review of the int. j. environ. res. public health , , of evidence on the effects of pet ownership on emotional, behavioural, cognitive, educational and social development. overall, the evidence suggests that pet ownership, and dog ownership in particular, may benefit these outcomes for children and adolescents. however, the evidence is mixed partly due to a broad range of different methodological approaches and varying quality of studies. in regards to the quality of the studies, the majority of the literature is categorised at low levels (levels and ) on the ocebm criteria [ ]. in addition, small samples sizes are common, and confounding factors have not always been accounted for. therefore, the findings from which conclusions are drawn should be interpreted with caution. diagrams have been conceptualized for the plausible relationships between pet ownership and children’s emotional, behavioural and cognitive outcomes (figures – ). these hypothesized diagrams focus strongly on the links found in the current literature within the field. we are well aware that the mechanisms behind these developmental processes are likely to be much more complex; they were simplified to focus on the plausible links found in this review, and for ease of interpretation. in addition, it is important to take into account the methodological issues, mixed results, and lack of replication of the literature used to postulate these hypothesized mechanisms. high quality research is needed to determine specific effects in pet type and child age, and to further explore if these links are truly causal. what follows is a brief summary of the results along with supporting research, followed by gaps in the literature and suggestions for further research directions. int. j. environ. res. public health , , of partly due to a broad range of different methodological approaches and varying quality of studies. in regards to the quality of the studies, the majority of the literature is categorised at low levels (level and ) on the ocebm criteria [ ]. in addition, small samples sizes are common, and confounding factors have not always been accounted for. therefore, the findings from which conclusions are drawn should be interpreted with caution. diagrams have been conceptualized for the plausible relationships between pet ownership and children’s emotional, behavioural and cognitive outcomes (figures – ). these hypothesized diagrams focus strongly on the links found in the current literature within the field. we are well aware that the mechanisms behind these developmental processes are likely to be much more complex; they were simplified to focus on the plausible links found in this review, and for ease of interpretation. in addition, it is important to take into account the methodological issues, mixed results, and lack of replication of the literature used to postulate these hypothesized mechanisms. high quality research is needed to determine specific effects in pet type and child age, and to further explore if these links are truly causal. what follows is a brief summary of the results along with supporting research, followed by gaps in the literature and suggestions for further research directions. figure . hypothesized links for the impact of pet ownership and attachment on emotional health outcomes that postulates (a) physiological responses from pet interaction result in stress reduction (green pathway), and (b) anxiety, separation anxiety and depression are indirectly reduced by a wider social network and increased social support and companionship from pets (blue pathways) and (c) pet attachment may be indirectly affected by primary caregiver attachment (mother figure) through the internal working model (red pathway). figure . hypothesized links for the impact of pet ownership and attachment on emotional health outcomes that postulates (a) physiological responses from pet interaction result in stress reduction (green pathway), and (b) anxiety, separation anxiety and depression are indirectly reduced by a wider social network and increased social support and companionship from pets (blue pathways) and (c) pet attachment may be indirectly affected by primary caregiver attachment (mother figure) through the internal working model (red pathway). int. j. environ. res. public health , , of int. j. environ. res. public health , , of figure . hypothesized links for the impact of pet ownership and attachment on self-esteem, and loneliness that postulates (a) pet attachment directly increases self-esteem, and self-esteem and self- concept are increased indirectly through a wider social network resulting in increased social support (green) and (b) loneliness is reduced through a wider social network gained from having a pet, and increased social support and companionship from the pet (blue) and (c) relationship and communication skills are honed through increased social interaction (red). figure . hypothesized links for the impact of pet ownership and attachment on cognitive and educational outcomes, that postulates (a) executive functions are indirectly supported by stress reduction and increased social support, and therefore a reduced incidence of problematic behaviours follows (green) and (b) improved academic outcomes may result due to education being positively affected by improved executive functions and increased social support (blue) and (c) social cognition and language acquisition are enhanced by communication and social interaction with pets (red). . . emotional outcomes overall, current evidence suggests that pet dogs may be beneficial in terms of preventing separation anxiety and social anxiety in both children and adolescents [ , ], however, this requires further investigation, as this finding is not consistent in older children and adolescents [ ]. it is unknown whether pet dogs can reduce symptoms of anxiety in children. there is little evidence for any effects for other pet types. in regards to depression, there is a lack of research investigating the impact of pet ownership in youths, particularly in young children under years old. similar to anxiety, findings in depression seem to be varied. findings may differ in younger age groups however, due to a typically higher level of interaction such as pet care and therefore stronger pet attachment [ ]; the nature of the relationship with the animal may be important in conferring psychological benefits such as depression more likely than pet ownership. overall it is suggested, but not conclusive, that vulnerable adolescents may benefit from pet ownership in terms of reduced figure . hypothesized links for the impact of pet ownership and attachment on self-esteem, and loneliness that postulates (a) pet attachment directly increases self-esteem, and self-esteem and self-concept are increased indirectly through a wider social network resulting in increased social support (green) and (b) loneliness is reduced through a wider social network gained from having a pet, and increased social support and companionship from the pet (blue) and (c) relationship and communication skills are honed through increased social interaction (red). int. j. environ. res. public health , , of figure . hypothesized links for the impact of pet ownership and attachment on self-esteem, and loneliness that postulates (a) pet attachment directly increases self-esteem, and self-esteem and self- concept are increased indirectly through a wider social network resulting in increased social support (green) and (b) loneliness is reduced through a wider social network gained from having a pet, and increased social support and companionship from the pet (blue) and (c) relationship and communication skills are honed through increased social interaction (red). figure . hypothesized links for the impact of pet ownership and attachment on cognitive and educational outcomes, that postulates (a) executive functions are indirectly supported by stress reduction and increased social support, and therefore a reduced incidence of problematic behaviours follows (green) and (b) improved academic outcomes may result due to education being positively affected by improved executive functions and increased social support (blue) and (c) social cognition and language acquisition are enhanced by communication and social interaction with pets (red). . . emotional outcomes overall, current evidence suggests that pet dogs may be beneficial in terms of preventing separation anxiety and social anxiety in both children and adolescents [ , ], however, this requires further investigation, as this finding is not consistent in older children and adolescents [ ]. it is unknown whether pet dogs can reduce symptoms of anxiety in children. there is little evidence for any effects for other pet types. in regards to depression, there is a lack of research investigating the impact of pet ownership in youths, particularly in young children under years old. similar to anxiety, findings in depression seem to be varied. findings may differ in younger age groups however, due to a typically higher level of interaction such as pet care and therefore stronger pet attachment [ ]; the nature of the relationship with the animal may be important in conferring psychological benefits such as depression more likely than pet ownership. overall it is suggested, but not conclusive, that vulnerable adolescents may benefit from pet ownership in terms of reduced figure . hypothesized links for the impact of pet ownership and attachment on cognitive and educational outcomes, that postulates (a) executive functions are indirectly supported by stress reduction and increased social support, and therefore a reduced incidence of problematic behaviours follows (green) and (b) improved academic outcomes may result due to education being positively affected by improved executive functions and increased social support (blue) and (c) social cognition and language acquisition are enhanced by communication and social interaction with pets (red). . . emotional outcomes overall, current evidence suggests that pet dogs may be beneficial in terms of preventing separation anxiety and social anxiety in both children and adolescents [ , ], however, this requires further investigation, as this finding is not consistent in older children and adolescents [ ]. it is unknown whether pet dogs can reduce symptoms of anxiety in children. there is little evidence for any effects for other pet types. in regards to depression, there is a lack of research investigating the impact of pet ownership in youths, particularly in young children under years old. similar to anxiety, findings in depression seem to be varied. findings may differ in younger age groups however, due to a typically higher level of interaction such as pet care and therefore stronger pet attachment [ ]; the nature of the relationship with the animal may be important in conferring psychological benefits such as depression more likely than pet ownership. overall it is suggested, but not conclusive, int. j. environ. res. public health , , of that vulnerable adolescents may benefit from pet ownership in terms of reduced depressive symptoms, and children who are attached to their dog during middle childhood may benefit in terms of resilience to depressive emotions in the long term. for young children, pet attachment seems to be a factor of importance for the prevention of depressive symptoms. within emotional health, the effect of pet ownership on child and adolescent self-esteem is currently the most studied outcome. research generally demonstrated that children who grow up with companion animals showed higher levels of self-esteem and developed into more socially competent adults than children who do not grow up with companion animals [ ]. some studies found pet attachment to be a mediator of a relationship between self-esteem and pet ownership [ ]; this is supported with longitudinal prospective research [ ]. therefore a relationship may exist between the level of attachment to one’s pet and self-esteem levels, similar to other components of psychological health. however, not all research is consistent with this suggestion; higher self-esteem and self-concept have been reported in pet owners irrespective of pet attachment [ , , ] although causation cannot be implied here due to cross-sectional and qualitative study designs. critical ages for the impact on pet ownership for self-esteem have been suggested [ ]; pet ownership may have the greatest influence in children under years old, and preadolescents and adolescents over years old. lastly, the majority of the evidence suggests that pets are useful in combating loneliness. pet attachment was positively related to the number of humans in their social support network. this suggests pet attachment may again play an important role or, it could be that these people are better at forming attachments in general with humans and/or pets, but again due to study design, causation is not justified. the impact of pets on measures of loneliness in children under years of age has not been investigated. the significant findings in emotional health are consistent with research involving interaction with dogs as opposed to pet ownership, in – -year-old children with insecure or disorganized attachment in stressful situations [ , ]. dogs caused children’s cortisol levels to drop significantly faster and to lower levels after a stressor. it was concluded children with insecure and disorganized attachment may profit more in regulating their physiological stress levels from the interaction with a friendly dog than with a human or toy dog. the data suggest an important role of physical contact in the reduction of stress, although findings on the benefits of physical contact with companion animals are still generally unclear [ ]. further explanations behind why dog interaction and ownership may have such benefits for anxiety in youths center on the social catalyst effect [ ], which states that pet dogs may stimulate conversation and alleviate social anxiety. hormonal effects may also play a role; companionship and interaction with dogs can also lead to increased levels of oxytocin and reduced levels of cortisol, attenuating physiologic responses to stress and anxiety [ ]. importantly, child-dog interactions could prevent the evolution of emotional problems into full-fledged mental, emotional or behavioural disorders during adolescence or later life during adulthood [ ], perhaps due to increased emotional support and resilience. this applies in particular to vulnerable (homeless) youths as companion animals provide emotional support in the form of loving relationships [ ]. furthermore pet therapy has the potential to reduce depressive symptoms and increase mood in children suffering from chronic physical illnesses such as haematological and oncological disorders, cystic fibrosis, diabetes, transplants, and other medical disorders [ ]. further research is needed as to whether childhood pet ownership may have similar effects. both quantitative and qualitative research find self-importance to be a common theme; pets act as a form of psychological support by making youths feel good about themselves and are enabled to create positive images of the self [ , ]; this also applies to non-western cultures [ ]. these findings are promising and suggest that pet ownership should be investigated as a strategy to increase self-esteem in developing youths. findings that support this include research carried out using a horse therapy program; although no intervention effect was found on self-esteem, an increase was found in perceived social support in comparison with the control group [ ]. pets such as horses and dogs are most likely to increase social circles and the number of human contacts, and if so, could increase emotional health outcomes such as self-worth and self-esteem. overall the current int. j. environ. res. public health , , of research generally displays potential for pets to increase children and adolescents’ resilience and self-worth. in particular, adolescent loneliness and isolation is an important issue, and if untended can manifest as a host of various physical and emotional problems, including anxiety, depression and low self-esteem [ ] and poor academic achievement [ ]. companion animals are used as a coping strategy for loneliness in youths due to their therapeutic nature [ ]. it is possible that companion animals offer a reciprocal affectionate and non-judgemental relationship, which has obvious benefits for child and adolescent development. notably, it is difficult to unravel other variables that may explain why pet owning youths seem to appear less lonely. the importance of parenting styles has previously been suggested [ ], which may differ in pet owning families, and is likely to increase responsibility, autonomy, empathy and socialization in comparison to non-pet owning households. however, pet ownership may independently impact on the development of empathy and socialization without the influence of parenting style; it is plausible that parents who keep household pets are actually fostering these qualities by proxy [ ], therefore lessening childhood loneliness. further well-designed studies are recommended for additional clarity, to infer causality, and to conclude whether there is a link between companion animals and child and adolescent loneliness. . . behavioural outcomes the evidence is mixed for the impact of pet ownership on child and adolescent behavioural outcomes. results of different research studies are not consistent on whether perceived competence in children is positively and significantly associated with pet ownership and/or attachment, dependent on age [ ]. there appears to be no long-term behavioural benefit from acquiring a pet dog, as child behaviour only improves when families first acquire the dog [ , ]. nevertheless, there is literature to suggest that pet ownership and pet care in particular is associated with increases in positive behaviours such as responsibility [ , , , , ]. therefore pet ownership and pet care responsibilities may encourage positive behavioural development in terms of independence, and other autonomous characteristics such as self-reliance [ ]. further well designed research is needed using objective measures of behaviour, such as school reports. in addition, as child and adolescent behaviour can predict future educational attainment [ ], it would be interesting to explore the potential links between pet ownership, behavioural outcomes and other indirect developmental relationships. other non-experimental mechanism-based reasoning reports suggest that pet owning children are likely to show decreased violence and antisocial behaviours, as pet ownership has positive effects of a wide range of developmental outcomes including social and moral development [ ]. however, no evidence of this was found in studies reviewed here. the idea that childhood and adolescent behaviour may predict future antisocial activity is not new. childhood disruptive behaviour has powerful long-term effects on adult antisocial outcomes, which continue into middle adulthood [ ]. if pets can promote such positive behaviour, they may be involved in early interventions. however, there is very little research in the area, and there are findings to argue against this claim; among youth offenders childhood bonding with a pet was not related to antisocial personality traits [ ]. . . cognitive outcomes pet ownership, attachment and parental pet care guidance were associated with higher levels of some areas of social cognitive development for example perspective taking abilities, and cognitive flexible problem solving skills [ ]. furthermore, self-reliance and independent decision skills were higher in pet-owning children compared to children who do not have pets [ ]. however, other areas of cognition were not affected in a similar manner; no differences in attention were found in dog owning children compared to non-dog owners [ ]. caution must be taken when interpreting findings. in addition to their inability to establish causality, most studies inadequately controlled for potential confounding factors. it cannot be concluded pet care guidance increases cognitive function with respect to higher level thinking and flexible problem solving. these higher cognitive skills may instead be due to good parental guidance in general rather than pet care guidance. other important int. j. environ. res. public health , , of confounding factors also need to be ruled out such as the quality of children’s home environments, beyond the presence of animals, which has been linked with both the concurrent and longitudinal cognitive development of preschool children [ , , ]. current research advocates pet ownership and animal interaction as a catalyst for learning and progressing in both cognitive and psychosocial domains [ – ]. the mechanisms behind the influence of pet interaction on cognitive development are not fully understood. speculations include improved cognitive executive functions (efs) through stress reduction and social support which in turn can positively affect behaviour and academic outcomes [ ] however, this remains to be tested. research has suggested that pets may aid a quicker progression of the four major periods of cognitive development [ ] (sensorimotor stage, preoperational stage, stage of concrete operations, and the formal operation stage [ ]) however, further study is warranted. as animals are “predictably unpredictable” [ ], pet behaviour to the observing child represents what cognitive development theory [ ] argues is the route of all learning, namely, cognitive incongruity, moderate discrepancy from established schema, and novel information [ ] however, this statement does not take into account that pet behaviour varies greatly and remains to be tested empirically. younger children (i.e., children in the preoperational stage) may be beginning to learn and develop their concept of social relationships, and interacting with pets may promote young children’s cognitive development; existing research appears to support this idea [ , ]. introducing children to animals during such a sensitive period may produce optimal results in terms of promoting their abilities to enhance social cognitive development [ ], in particular perspective taking abilities, although more empirical research is needed to infer this. possible mechanisms may include pet ownership enhancing the progression of the child’s internal thinking (i.e., reorganization and advancement) which shapes their schema and may enhance overall cognitive development. in addition, as children include their pets in physical, imaginative, and free play [ ], social and cognitive functioning may be enhanced due to practicing problem solving abilities and creativity [ ]. other than social-cognition, further well-designed research is required on pet ownership that examines mainstream cognitive outcomes such as executive function, memory and iq. . . educational outcomes pets have the potential to improve educational outcomes. for many children, companion animals are likely powerful motivators for learning [ ] and development [ , , ]. pets have also been found to enhance performance in school-related tasks [ ] and enrich children’s vocabulary [ ]. although mechanisms are not clear, this is possibly due to children learning and retaining more about subjects they are emotionally invested in, and furthermore learning is optimized when it occurs within meaningful relationships. pets also engage children in both verbal and physical reciprocal behaviours [ ]. interestingly, research has demonstrated that pet owners benefit from more advanced biological knowledge than non-pet owning children suggesting that pets facilitate the development of a more sophisticated, human-inclusive representation of animals, knowledge about the internal structure of animals and factual anatomy [ , ]. so far, no research has investigated the impact of pets on later adolescent educational outcomes. the support of pets in children’s learning process is also demonstrated in research involving classroom animals with respect to reading skills [ , ], social functioning and academic competence [ ], emotional stability within school and attitudes towards school [ ]. the evidence base is strongest for dogs; the presence of a dog in the classroom has been shown to help children exercise better cognitive executive functions and perform better academically [ ]. further research is required to investigate whether pet ownership is associated with academic attainment. . . social development outcomes findings are mixed in terms of the impact of pet ownership on children’s social and socio-emotional development. childhood pet ownership encourages healthy social development int. j. environ. res. public health , , of in terms of social competence, social networks, social interaction, social communication, empathy and social play behaviour, leading to higher age-adjusted developmental scores [ , , ]. however, it must be noted that pet bonding and, therefore, pet attachment appeared to be a stronger determinant of these benefits than pet ownership [ ]. the finding that pets increase social networks is encouraging; how a child develops is strongly influenced by the child’s social network, for example the support provided by social networks can enhance self-esteem and contribute to mental health, by providing a buffering, protective function against psychosocial stress [ ]. in addition, the finding that pets increase social play behaviour and communication is important, and strongly suggests that pets have the potential to encourage the development of effective socially interactive relationships with others. alternatively, pets might actually be detrimental to social development and may even reduce levels of social interaction with family and friends in some children [ ] which is likely due to the child substituting human contact for interaction with their pet. however, the reduced quantity of social interaction does not mean the quality of these human relationships will suffer. in addition, no significant effects were found on the impact of childhood dog ownership on social externalizing outcomes (such as sharing, fighting and understanding others’ feelings) [ ], nor social functioning in adolescents [ ]. other research finds social provisions in children are enhanced by classroom pets with children displaying more prosocial behaviours with peers [ ]. further high-quality research is needed to infer causality. in addition the majority of the research has been conducted when interactions on social media were not yet very common. children’s experience of “expanded” social networks is very different now than it was a couple of years or decades ago. as more and more children experience friendships (and abuse) online and on social media, the effects of pets on the feelings of social isolation in this context would be particularly cogent. . . risks/costs to children and adolescents associated with pet ownership along with the benefits of the ownership of companion animals, which may include improved child behaviour and development, certain negative consequences have been noted. these include zoonotic infections [ ], allergy and asthma [ ], bites and other injuries [ ] and the psychological and emotional costs due to pet bereavement [ ]. young children are at a greater risk of zoonotic infection; this is a particular concern for immunocompromised children (reviewed in [ ]). in addition, children are at a greater risk of animal bites from a household pet (e.g., about %– % of children are bitten by a familiar dog [ – ]). children under years of age are significantly more likely than older children to provoke animals before being bitten and are most at risk of serious injury [ , , , ]. . . methodological limitations the review reveals mixed evidence and conflicting results. in studies investigating pet ownership on human health and development such inconsistent findings are not infrequent due to use of a wide diversity of designs, small effect sizes and small and homogeneous self-selected samples [ , ]. in addition the research findings within the field are often limited by lack of replication [ ]. this review highlights a number of particular methodological limitations that require addressing in future studies. if these concerns are addressed, then the research quality in the field will be significantly improved. firstly, there is inconsistency in how studies classify non pet owners. the studies reported here did not appear go into any detail regarding comparators; for example youths with recently deceased pets are likely to be regarded as non-pet-owners. papers commonly specify non pet owners as “non-dog” and “non-cat” owners, however, this frequently fails to account for potential effects of other companion animals on the outcomes of interest. pet owners are often treated as one homogenous population without consideration of differences between them or of differences in species owned, their attitudes to pet ownership and pet attachment, both of which are likely to impact potential benefits from their interaction with their pets. secondly, in some studies, the reliance of subjective self-reported data in place of objective validated outcomes is problematic, due to an increased probability of false negative and false positive reporting. int. j. environ. res. public health , , of thirdly, the majority of studies to date have been cross-sectional, which means that the direction of the association between pet ownership and different aspects of child development cannot be determined. for example, children deemed by their parents as more responsible may be viewed as more ready to take on the role of pet owners, and therefore, more likely to get a pet than children who are viewed as less responsible or mature. this reverse causality could still result in a positive association between pet ownership and responsible behavior, but in this case, responsible behavior would cause pet ownership and not the other way around. due to the nature of the independent variable (owning a pet or not), research in this field cannot be truly experimental, and therefore prospective studies are needed to determine the temporal direction between pet ownership and the outcomes [ , ]. fourth, longitudinal and prospective studies in pet ownership and child development are needed to determine the long-term consequences for children of establishing relationships with pets and other animals. a lack of longitudinal and epidemiological data in this area hampers the development of appropriate and effective interventions [ ]. fifth, research into the effects of animals on human health and development have also been historically weak in terms of statistical power and the ability to appropriately control for confounding variables [ ]. pet ownership has been associated with numerous socio-demographic factors [ , , – ]; the majority of studies in this review have failed to take into account some of these factors. conflicting findings may be due, at least in part, to the inadequate control of variables identified as potential confounders. furthermore, a child’s interaction with pets is mediated by interactions with adults, siblings, and peers. therefore, a life-course approach is needed to specify mediational models and pathways to later developmental, and to understand the different forms of social and emotional support pets may provide, as well as how this support is contextualized within adult, peer and pet relationships over time [ , ]. for example, a pet may positively influence emotional and mental health of both children and adults within a family unit. because of the reciprocal nature of all relationships, children who show more positive behavior due to bonding with their pet, may elicit more positive responses from their parents, thus contributing to an overall positive family functioning. in turn, parents, who benefit from lower levels of anxiety or depressive symptoms from owning the same pet, may interact more positively with their children. another important limitation for the majority of studies included in the review is that it is not possible to know whether families with children having no or minimal challenges with emotional health or general developmental difficulties are more or less likely to live with companion animals, compared with families with children having challenges. last, it is possible that the published literature on the impact of pets on children’s health is biased by selective publication of positive results. for example, studies demonstrating a significant effect of pet ownership may be more likely to be published and cited by others than studies with negative findings. the lack of negative/null findings illustrated in figure suggests a high likelihood of this “file drawer effect,” which may skew the available scientific literature on human-animal relationships [ ]. . conclusions in summary, current evidence suggests that overall, pet ownership may be beneficial to child and adolescent emotional, cognitive, behavioural, educational and social development. although the majority of studies performed to date had methodological weaknesses, the pattern of findings among sub-populations and age groups suggests that companion animals have the potential to promote and contribute to healthy child and adolescent development. however, there is a scarcity of research to elucidate the mechanisms through which pet ownership promotes child development. this is required to identify the processes that underlie the observed relationship between pet ownership, pet attachment and child development. future research should examine the potential effects of different pet types. although the majority of research has taken into account the types of pets children owned, int. j. environ. res. public health , , of dogs appear to be the most researched and beneficial, perhaps due to a higher level of interaction and reciprocation in comparison to other pets. there is little understanding so far of potentially differential effects of different types of pets on specific psychological, behavioural, and social problems [ ]. further research is required to investigate the mechanisms through which pet ownership promotes child and adolescent development. future studies must better account for confounding variables, and preferably use longitudinal and as strictly controlled designs as possible in order to infer causality. acknowledgments: this review paper was funded by the waltham® centre for pet nutrition. author contributions: rebecca purewal collected, analysed the data and drafted the manuscript. carri westgarth, robert christley, carol joinson, katarzyna kordas and kerstin meints conceived the study, and along with nancy gee advised on data collection and analysis. all authors contributed to drafting of the manuscript, and read and approved the final manuscript. conflicts of interest: nancy gee was employed by the funding agency at the time the project was selected and funded. references . world health organization. available online: http://www.who.int/maternal_child_adolescent/topics/ child/en/ (accessed on august ). . fogel, a. developing through relationships: origins of communication, self, and culture; 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[crossref] [pubmed] . health and social care information centre. annual report and accounts. available online: http://www. hscic.gov.uk (accessed on july ). . serpell, j.a.; coppinger, r.; fine, a.h.; peralta, j.; aubrey, h. welfare considerations in therapy and assistance animals. in handbook of animal-assisted therapy: theoretical foundations and guidelines for practice; academic press: cambridge, ma, usa, ; pp. – . © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . / http://www.ncbi.nlm.nih.gov/pubmed/ http://www.hscic.gov.uk http://www.hscic.gov.uk http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	materials and methods 	results 	emotional health outcomes 	anxiety 	depression 	self-esteem 	loneliness 	behavioural outcomes 	cognitive outcomes 	educational outcomes 	social development outcomes 	discussion 	emotional outcomes 	behavioural outcomes 	cognitive outcomes 	educational outcomes 	social development outcomes 	risks/costs to children and adolescents associated with pet ownership 	methodological limitations 	conclusions wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ guest editorial: equine-assisted therapy equine-assisted therapy barbara maclean, lcat, mt-bc since , the samuel s. stratton department of veterans affairs (va) medical center in albany, new york, has offered the equine-assisted ther- apy program for veterans with posttraumatic stress disorder (ptsd). the first year, the program ran for weeks, and in and , we were able to run -week programs in the summers and a -week program in the fall of . also in , veterans from the va’s adaptive sports program enjoyed a -hour “sampler” afternoon. in , we are holding two -week sessions. equine-assisted therapy program six veterans from various mental health programs are enrolled in each round of sessions. each veteran identifies one or two goals on which he or she would like to focus; some of the more common goals are improving verbal and nonverbal communication, decreasing anxiety, handling frustration, building confidence and self-esteem, completing tasks, and becoming more aware of feelings. arriving at the facility early in the afternoon, the veterans groom their horses and do groundwork, a training process for establishing communication with the horse, for about an hour and a half. grooming is important for bond- ing and building a relationship with the horse and is one form of “friendly game.” friendly game is one of seven games played with the horses as a way to train the horse. the other six games establish the veteran as the leader and teach both the veteran and the horse skills that will be used when the veteran mounts the horse. these games invite the horse to move in various ways: for- ward and backward, sideways, in a circle, moving just the head, just the hind quarter, head and shoulders, etc., and to walk, trot, and stop when asked. the program is not considered a riding program, but if the veterans are ready, they may do some of these games while mounted. using a bareback pad or saddle, they tack up their horse and mount. all the skills learned on the ground can be applied to the mounted work. afterward, they remove and put away the tack, give their horses a carrot or apple treat, and return them to their stalls. group discussion and processing follow each session. the psychologist and recreation therapist guide the processing to important issues and help the veterans com- municate (with humans); acknowledge their feelings, frustrations, and suc- cesses; focus on their goals; and provide and receive feedback and suggestions. if needed, some veterans may meet individually with one of the therapists between equine sessions. ix jrrd, volume , number , x horses and ptsd people with ptsd often isolate themselves, have difficulty connecting with others, and have difficulty trusting others. many people connect more easily with animals, who can be more accepting of them, do not talk back, and enjoy being touched. this is the reason that pet therapy is so popular. horses are larger than the average pet, so veterans with ptsd who have problems controlling their impulses realize immediately that, if they express their anger violently or make sudden unexpected motions, the horse is big enough to cause them significant harm. as prey animals, horses are hypervigilant until they learn they are not in danger. unlike with many dogs, who trust unconditionally, horses require humans to work to gain their trust. because of their maclean. guest editorial xi own hypervigilance, veterans with ptsd easily understand and can relate to the trust and hypervigi- lance in a horse. other symptoms of ptsd are emo- tional numbness, a feeling of “not being in one’s body,” and a lack of awareness of body language. horses understand communication primarily through body language, so the veterans with ptsd learn to become more aware of their bodies, their body lan- guage, and expression of emotion through their bod- ies. they must become aware of the body language of the horse, which helps them become aware of others’ body language, too. horses are also herd animals and look for a leader to follow. some horses want to be the herd leader. a horse and its human are a herd of two. one of them will establish itself as the leader. if it’s not the human, it will be the horse. the veterans must be assertive without becoming aggressive and show confidence to gain the respect of the horse and become the “herd” leader. natural horsemanship and ptsd the equine-assisted therapy programs are con- ducted at the every body counts (ebc) therapy center in east berne, new york, a facility that prior to provided services mainly to children with physi- cal impairments and autism. although the staff at ebc (two physical therapists and a nurse) had no experience with adults and very little with the psychi- atric population, they are very intuitive and work extremely well with our veterans. this facility also employs a natural horsemanship technique, which endorses appealing to a horse’s natural and herd instincts, which proved to be perfect for our veterans with ptsd. natural horsemanship is a method of training and interacting with horses that differs from traditional methods. rather than using force and teaching a horse “who’s boss,” natural horsemanship keys into the language of the horse. instead of forcing the horse to do something, the handler helps the horse to understand what is wanted and to be willing to do it. handlers use the body language and herd behaviors of horses to develop a partnership with the horse. gentle but firm pressure applied in place of fear, pain, and defeat invite the horse into an understand- ing and trusting relationship. because of the use of this method and the lessons learned from the horses, amazing things are accomplished that could never have occurred in a simple talk therapy session. from the veterans the following comments were collected from veterans who participated in the program: “i learned there is another way of doing things besides ‘kicking them in the ribs.’ this is another way to communicate, and i can use it when commu- nicating with my wife.” “being with the horses helps me relax. i learned to be more patient.” “i can feel the ground under my feet. i haven’t felt that in a long time. i feel present in the moment.” “i was able to be assertive without feeling guilty.” “i learned the difference between being asser- tive and being aggressive.” “i feel good about myself and what i’ve been able to do.” “i’ve learned patience, which i never had, and i’ve learned trust, which i never had.” jrrd, volume , number , xii future plans va staff, veterans, and the staff and volunteers at ebc are very happy with the success of the equine-assisted therapy program, and we hope to expand it. to that end, in one va staff member and one ebc staff member attended a -day train- ing session in tucson, arizona. they learned horse- manship from a wheelchair and more about ptsd, spinal cord injury, and finding and training volun- teers and also had an experiential lesson in which they simulated being blind and working with the horses. we are hoping to join forces with another facil- ity that teaches similar techniques, endorsed by the equine-assisted growth and learning association (santaquin, utah), and that specializes in treating substance abusers. barbara maclean, lcat, mt-bc lead therapist recreation/creative arts therapy new york va medical center email: barbara.maclean@va.gov this article and any supplementary material should be cited as follows: maclean b. equine-assisted therapy. j rehabil res dev. ; ( ):ix–xii. doi: . /jrrd. . . mailto:barbara.maclean@va.gov 	barbara maclean, lcat, mt-bc 	lead therapist recreation/creative arts therapy new york va medical center bonding in children with asd: findings within and across case studies okanagan child-canine bonding in children with asd: findings within and across case studies by kathryn rebekah struik b.h.k. university of british columbia-okanagan, british columbia, canada a thesis submitted in partial fullfillment of the requirements for the degree of master of arts in education in the college of graduate studies education the university of british columbia (okanagan) july, © katheryn rebekah struik, i the undersigned certify that they have read, and recommend to the college of graduate studies for acceptance, a thesis entitled: child-canine bonding in children with asd: findings within and across case studies submitted by kathryn struik in partial fulfillment of the requirements of the degree of master of arts in education . dr. john tyler binfet, faculty of education, ubc okanagan supervisor, professor (please print name and faculty/school above the line) dr. margaret macintyre latta, faculty of education, ubc okanagan supervisory committee member, professor (please print name and faculty/school in the line above) dr. greg garrard, faculty of creative and critical studies, ubc okanagan supervisory committee member, professor (please print name and faculty/school in the line above) dr. edward taylor, faculty of health and social development, ubc okanagan university examiner, professor (please print name and faculty/school in the line above) external examiner, professor (please print name and university in the line above) july , (date submitted to grad studies) additional committee members include: please print name and faculty/school in the line above please print name and faculty/school in the line above ii abstract the demand for support for children and families impacted by autism spectrum disorder (asd) continues to grow, and one increasingly popular avenue of support is the use of therapeutic canines. parents searching for service canines trained to work with children with asd however face formidable obstacles surrounding the availability and cost of canines. due to these challenges, parents may seek less formal routes to support their children with asd, often adding companion canines to their family. despite enthusiasm for integrating companion canines into the care plan, research examining human-animal bonding in children with asd and the mechanisms through which child-canine bonding occurs in this population is needed. furthermore, research identifying factors that influence children on the spectrum’s ability to bond with a companion canine is meagre. given the nuanced interactions that exist to indicate the presence or absence of bonding (e.g., proximity, initiations of interactions and touch), this exploratory case study employed interviews and observations to gain insights into the mechanisms or pathways through which child-canine bonding occurs and to identify factors contributing to this bonding process. families (n= ), with a child aged - years with a confirmed diagnosis of asd and their family canine, participated in the study. using the components of attachment theory (i.e., safe haven, secure base, proximity seeking, and separation anxiety) as a framework to categorize thematic responses, directed content analysis was used to identify whether the child-canine relationship could be conceptualized as an attachment relationship. conventional content analysis was used to identify key themes characterizing child-canine bonding arising in interviews and observations and later verified by field notes. findings revealed support for the use of bowlby’s theory to understanding child- canine bonding with proximity maintenance identified as the most prevalent component followed iii by secure base, safe haven, and separation anxiety. a cross-case analysis revealed seven prevalent themes characterizing child-canine bonding. the themes that were identified included: ) canine acquisition; ) bonding strategies; ) canine characteristics; ) canine as family member; ) family profile; ) benefits; and ) other. theoretical and applied implications of these findings are addressed. iv preface this research was approved by the ubc okanagan behavioural research ethics board on september , . ethics certification #h - . v table of contents thesis committee ................................................................................................................... i abstract .................................................................................................................................... ii preface ...................................................................................................................................... iv table of contents ............................................................................................................... v list of tables ....................................................................................................................... viii acknowledgements ........................................................................................................... ix chapter – introduction ................................................................................................. . background and context ....................................................................................................... . problem statement ................................................................................................................ . statement of purpose and research questions ..................................................................... . theoretical frameworks: family systems theory and attachment theory ........................ . significance ........................................................................................................................... . operational definitions ......................................................................................................... . presentation of the thesis ................................................................................................... chapter – literature review .................................................................................... . autism spectrum disorder .................................................................................................. . . defining autism spectrum disorder ......................................................................................... . . characteristics of autism spectrum disorder ............................................................................ . . social skills of children with autism spectrum disorder ........................................................ . . impact of asd on the family .................................................................................................... . human-animal interaction.................................................................................................. . . benefits of human-animal interaction ...................................................................................... . . autism spectrum disorder and human-animal interaction...................................................... . . service and therapy canines for children with autism spectrum disorder ............................ . . companion canines for children with autism spectrum disorder ........................................... . attachment theory and the human-animal bond ............................................................. . summary and conclusion ................................................................................................... chapter – research methods .................................................................................... . rationale for a qualitative research approach .................................................................. vi . . rationale for a case study ......................................................................................................... . . case study ................................................................................................................................. . case selection ..................................................................................................................... . data collection procedures ................................................................................................. . research sample ................................................................................................................. . . recruitment procedures and consent ........................................................................................ . . participant recruitment .............................................................................................................. . . interviews ................................................................................................................................... . . field notes ................................................................................................................................. . . observations .............................................................................................................................. . data analyses ...................................................................................................................... . . analysis of attachment theory using directed content analysis ........................................... . . the identification of emerging themes using conventional content analysis ....................... . . ensuring the fidelity of the study ....................................................................................... chapter – results ............................................................................................................ . demographics ...................................................................................................................... . . family demographics ................................................................................................................ . . companion canine demographics ............................................................................................. . . child-canine attachment level ................................................................................................ . support for bowlby’s attachment theory .......................................................................... . . proximity maintenance .............................................................................................................. . . safe haven ................................................................................................................................. . . secure base ................................................................................................................................ . . separation anxiety ..................................................................................................................... . themes characterizing child-canine bonding .................................................................. . . canine acquisition ..................................................................................................................... . . bonding strategies ..................................................................................................................... . . canine characteristics................................................................................................................ . . canine as family member ......................................................................................................... . . family profile ............................................................................................................................ . . benefits ...................................................................................................................................... . . other .......................................................................................................................................... . summary ........................................................................................................................... vii chapter – discussion of findings, implications and conclusion ....... . overview ........................................................................................................................... . summary of findings ......................................................................................................... . . the nature of the child-canine relationship .......................................................................... . . factors influencing and benefits from the child-canine bond ............................................... . . limitations ............................................................................................................................... . . implications .............................................................................................................................. . . conclusion ............................................................................................................................... references ............................................................................................................................... appendices .................................................................................................................................. appendix a – consent form .................................................................................................. appendix b– consent form .................................................................................................... appendix c– verbal assent form .......................................................................................... appendix d– verbal assent form .......................................................................................... appendix e – primary caregiver of child with asd: demographic survey......................... appendix f – parent interview guide ..................................................................................... appendix g – letter of initial contact ................................................................................... appendix h – recruitment flyer ............................................................................................ appendix i – observational data map ................................................................................... viii list of tables table . ensuring the fidelity of the …………….…………………………….………………. table . family demographics ………….…………………………………….………………. table . demographics of children with and without autism spectrum disorder………….... table . demographics of companion canines …………….………………………………….. table . child to canine attachment level …………….………………….………………….. table . features of attachment evident in the child-canine bond ……….…………………. table . prevalent themes, coding descriptions and examples ……….……………………... table . the absence or presence of prevalent themes within individual cases …………….. ix acknowledgements first off, i would like to say thank you to my supervisor, dr. john tyler binfet, for your continual support, encouragement, and guidance throughout this process. your passion for, and expertise in, the field of human-animal interaction was invaluable for the completion of this project. thank you to my supervisory committee members, dr. margaret macintyre latta and dr. greg garrard, for your support and encouragement, which has always left me feeling motivated. i would also like to thank the entire faculty of education at ubc’s okanagan campus, for believing in my work and cheering me on. i would like to thank the participants of this study for welcoming me into their homes; their enthusiastic participation not only made this study possible, but also made it an enriching experience. i also want to say thank you to the organizations that assisted in recruiting participants; the university of british columbia, autism okanagan, and starbright children’s development centre. also, i am so grateful to all of my friends for their support and enthusiasm throughout this entire process. i would like to thank my family, harry, rita, matthew, and laura, for your unconditional love and support throughout my academic endeavors. mom, thank you for always getting my knowledge “up.” your guidance, support, and input was instrumental for the completion of this study. laura, you are a wealth of knowledge. your ability to deconstruct tough philosophical concepts and answer any questions i had regarding qualitative methodologies was invaluable. finally, i would like to dedicate this thesis to a very important member of our family and the reason i am so passionate about the healing power of animals, our golden retriever, payton chapter – introduction . background and context parents of children with autism face unique challenges as they raise their children within busy social contexts. children with exceptionalities often face obstacles that can be alienating as they try to fit into complex social structures and systems (home, ). the global prevalence of autism has increased twenty to thirtyfold over the past decades and is now the most common neurological disorder affecting children (current figures are in every children are diagnosed; center for disease control and prevention, ). autism spectrum disorder (asd) is a lifelong developmental disability defined by criteria in the diagnostic and statistical manual of mental disorders: dsm- , which includes deficits in social communication and social interaction along with restricted, repetitive patterns of behaviour, interests, or activities (american psychiatric association, ). a pervasive characteristic of children with asd is their difficulty establishing adult-child and peer-peer bonds (autism canada foundation, ; o’haire, ). due to this difficulty, children with asd may struggle to engage with their peers. this struggle can make them prone to experiencing social isolation resulting in an inability to participate in activities that both provide a source of joy and serve to promote their development (o’haire, mckenzie, mccune, & slaughter, ). o’haire and colleagues ( ) assert that social isolation and a lack of social interactions early in the neurological process of development for children with asd may lead to further impairment of neurotypical behavioural development, creating a cycle of increasing behavioural disturbances. accordingly, this signals the need for the child’s primary caretaker(s) to address social skill deficits. intervention strategies should be delivered as early as possible in order to provide the greatest likelihood of successfully improving these skills that are critical to optimum long-term outcomes (autism speaks, ; johnson ). the demand for support for social skills development for children on the spectrum continues to grow, and one increasingly popular source of support is the use of canines. due to reported benefits, families impacted by autism have become increasingly intrigued by the therapeutic effects that service canines can have on children with asd (burrows, adams, & spiers, ). parents searching for service canines trained to work with children with asd however, face formidable obstacles surrounding both the availability and cost of these canines. according to the canadian national service canines (nsd) training centre, there is currently an - month waiting list for a service canine at a cost of $ , cdn (nsd, ). even if funds are available, the wait time is a deterrent for many families as the implementation of early intervention strategies is key to the developmental well-being of newly diagnosed children (autism speaks, ; johnson, ). for families impacted by autism, their decision to add a service canine is well-grounded in peer-reviewed findings in the field of human-animal interactions (hai) attesting to the benefits of the human-animal bond for children with asd (e.g., carlisle, ; fine, ; grandin, ; levinson, ; o’haire, ). however, with long wait-lists and the price tag for a service canine out of reach for many families, parents are increasingly turning to less vetted means of finding canines for their children. as parents seek informal routes to provide support for their child with autism, they are often left considering an untrained canine as a potential companion given the long waitlists and prohibitive cost of a service canine. a study by carlisle ( ; ) examining the role of pet canines in families of children with autism, revealed that children with autism can develop stronger social skills and assertiveness when they are closely connected to their companion canine. therefore, a successful bond between a child with autism and his/her canine is an especially important aspect of canine selection. ensuring an optimal child-canine bond is critical, especially as canines hold potential to serve as social catalysts, facilitating social interactions and connections for children with asd (carlisle, ; mcnicholas & collis, , o’haire, ; serpell, ). indeed, in order to fully capitalize on the positive benefits that a canine can facilitate for a child with asd, there is a need for a better understanding of what might influence this bonding process and how to ensure a successful child-canine bond develops (hosey & melfi, ). . problem statement autism is the most common neurological disorder affecting children (center for disease control and prevention, ). human-animal therapeutic interventions based on utilizing the emotional aspects of human-animal relationships have the potential to be an effective tool in diminishing the withdrawal of children with asd by targeting the core symptoms of the disorder (e.g., impairments in verbal and nonverbal communication, social interactions and restricted patterns of behaviour); (berry, borgi, francia, alleva, & cirulli, ). despite enthusiasm for integrating companion canines into the care plan for socially withdrawn children with asd, research identifying factors that influence children on the spectrum’s ability to bond with a companion canine is meagre (berry, borgi, francia, alleva, & cirulli, ). there is a particular dearth of empirical research examining the triad relationship between the child, the family canine, and the family as a means to identify what might influence a child on the spectrum's ability to bond with a companion canine. the mechanisms or pathways through which child-canine bonding occurs in typically developing children remain largely unexamined. as well, a nuanced understanding of the human-animal bond for children on the spectrum has yet to be identified. for example, we lack an understanding of what might influence a child with asd to bond with his/her companion canine and what, if any, strategies are used by families to ensure this bond is established and nurtured. in addition, existing research has been focused on the effects of owning a companion canine for a child with asd from the parents’ perspectives (e.g., burrows & adams, ; coltea, ; mackinnon, ). this knowledge gap leads to questions about what might contribute to or detract from the bonding process and how families impacted by asd help ensure a strong canine-child bond. in order to successfully integrate a companion canine into a home environment, an understanding of the many personal and external factors influencing this interactive relationship is essential. . statement of purpose and research questions the purpose of this multiple case study was to understand child-canine bonding with a focus on identifying the factors contributing to bonding in children with asd to their family canines. four areas requiring investigation were identified for this study. these included: ) the identification of what, if any, components of attachment (e.g., safe haven, secure base, proximity seeking and separation anxiety) are evident in the relationship; ) the identification of physiological and temperamental characteristics of canines that contribute to their bonding with children with asd; ) direct observations of interactions between a child with asd and his/her companion canine; ) and the identification of strategies employed by families to facilitate child- canine bonding. the two overarching research questions that guided this study were as follows: . is there evidence that the attachment components of safe haven, secure base, proximity seeking, and separation anxiety are evident features of the child-canine relationship? if so, to what extent are these four features of attachment evident? . what are the prevalent themes emerging from interviews and observations of canine- child bonding? . theoretical frameworks: family systems theory and attachment theory both bowen’s ( ; ) family systems theory and bowlby’s ( ; ; ) attachment theory provided a theoretical framework to guide this study’s research questions. systems theory is a theoretical framework based on the concept that a system can be best understood in the context of relationships with other systems, rather than in isolation. systems theory was first introduced in the s by biologist bertalanffy ( ) and furthered by ashby ( ) and bateson ( ). bowen’s family systems theory is set apart from others as he was the first to widen his view of individual functioning to include reciprocal biosocial interactions, focusing on how families functions as systems of influence. murray bowen, trained as a psychiatrist, worked with individuals diagnosed with schizophrenia. initially, the treatment primarily focused solely on the individual; however, he changed his methods after observing the relational interactions between the identified patient and his or her family members (tate, ). bowen was particularly interested in the dynamics that occurred between the patient with schizophrenia and the mother. the emotional intensity within this parent-child dyad revealed a level of involvement that made it difficult to view the patient with schizophrenia as a separate individual (kerr & bowen, ). bowen furthered his examination of this type of interaction by including other nuclear family members (i.e., father and/or siblings). these breakthrough observations moved bowen to acknowledge how influential the family system is on an individual’s functioning (kerr & bowen, ). bowen’s family system theory has since been used to describe how the social existence of human beings, in family groups, effects the functioning of each individual member within each family (craig, ). to date, there is no single systems theory about families (cridland et al., ); bowen however, was the leader in family systems theory and will therefore be referred to in this study. family systems analysis (bowen, ; ) framework describes families as a system of interconnected and interdependent individuals. to understand an individual, we must understand the family system of that individual. an individual, certainly a young child, cannot be understood in isolation from his/her family system (bowen, ). children are embedded within multiple systems that interact both directly and indirectly to influence development and behaviour; the most important influence being the family system (bronfenbrenner, ). bronfenbrenner ( ) asserts that the family system is the most important influence for children and subsequently impacts how they develop, behave, and perceive their environment. this sheds light on how influential the family system is for a child with special needs and more specifically, for a child with asd. when families integrate a canine into their home and view the canine as a significant other, the family canine becomes a sub-system within the complex family system (jalongo, ). sub-systems are smaller units within a family (e.g., martial (or couple), parental, or sibling sub-systems) that together comprise the larger family system (minuchin, ). from this perspective, family companion canines become nested within the family social system (jalongo, ). furthermore, bowen ( ) believed that behaviour was best understood when viewed within the context of naturally occurring processes. therefore, in order to gain an in-depth understanding of the child-canine bonding process this qualitative study investigated influences from within the family, including canines as part of the family unit, by utilizing a family systems perspective rather than in isolation from the family. bowlby’s attachment theory ( ) was initially proffered to explain the development of deep emotional bonds characterizing close relationships. given the complexities of the child- canine relationship in children with asd, the terms “attachment” and “bonding” are used interchangeably in the current study. however, it must be noted that in an infant-caregiver relationship, the terms “attachment” and “bonding” have distinctive meanings. in an attachment- caregiver relationship, bonding refers to the parent’s tie to the infant and is thought to occur within the first few hours or days of life (bowlby, ). attachment, in contrast, refers to the emotional relationship between infants and primary caregivers, which develops gradually (bowlby, ). bowlby ( ) described attachment as a lasting psychological connectedness between human beings characterised by four distinguished features: ) their physical nearness and accessibility are enjoyable (proximity maintenance); ) they are missed and become anxious when absent (separation distress); ) they are dependable sources of comfort and provide a base to explore the environment (secure base); and ) they are sought to alleviate distress (safe haven). although family systems theory and attachment theory are two separate theories, they complement each other in distinct ways. for example, the family system and the interactions within that system influence attachment styles in children (de wolff & van ijzendoorn, ). de wolff and van ijzendoorn ( ), found that attachment security in children is directly linked to parental sensitivity. these attachment styles in children are most commonly thought of as the attachments between a child and his/her parents (bowlby, ). not all of young children’s attachments are to fellow human beings, however (jalongo, ). children can become attached to companion animals and display classic attachment behaviours, including: seeking close physical contact (proximity seeking), protesting separation/striving to be reunited (separation anxiety), communicating through touch and nonverbal cues, acting as a base of security from which the child can explore the surrounding environment (secure base) and turning to the other for comfort (safe haven) (melson, ). the use of these two theoretical frameworks guided and supported the current study, helped determine appropriate research questions, and gave direction to interviews and discussions to focus the research. both family systems theory and attachment theory provided a framework for investigating what factors might influence the child-canine bond. . significance this research is important because the findings hold potential to provide insights into what influences the bonding process between children with asd and their companion canines. this research holds both theoretical and applied significance. building upon emerging findings explicating bonding between children with asd and their companion canines, this research holds promise to inform researchers about the nuanced interactions taking place within family contexts that facilitate child-canine bonding. the case study methodology offers unique advantages for identifying the salient characteristics of children, canines, and families contributing to successful bonding that would otherwise be difficult to access/observe. from an applied perspective, this research holds potential to inform parents seeking to support their children through the addition of a companion canine. there are familial, social, and economic ramifications arising from increasing awareness of the characteristics found in children, in companion canines, and families that nurture successful child-canine bonds. . operational definitions animal assisted therapy. pet partners (formerly the delta society) published the following widely cited definition for animal assisted therapy (aat). animal-assisted therapy (aat): aat is goal-directed intervention in which an animal that meets specific criteria can be a significant part of treatment for people with a physical, social, emotional, or cognitive diagnosis. aat is directed and/or delivered by a health/human service professional with specialized expertise, and within scope of practice of his/her profession. key features include: specified goals and objectives for each individual; and measured progress (fine, ). service canine. according to the canadian service dog foundation ( ) a service canine is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability. the work or tasks performed by a service canine must be directly related to the handler's disability. service canines are typically trained and certified by assistance canine organizations and have full public access right. therapy canine. the canadian service dog foundation ( ) defines a therapy canine as a socially interactive canine trained to work for a handler to provide service and comfort to other people. therapy canines can be found working in hospitals, retirement homes, nursing homes, schools, libraries, and rehabilitation units for children with learning disabilities or behavioural challenges. all therapy canines must have a friendly, patient, and gentle temperament. companion canine. the canadian service dog foundation ( ) defines a companion canine as a family pet with no specific training or certification and does not have public access rights (canadian service dog foundation, ). . presentation of the thesis this thesis is presented in five chapters. the second chapter provides a review of relevant literature in highlighting the knowledge gap that this study addresses. this review is followed by the research methods, findings, and discussion. chapter – literature review in this chapter, a review of relevant literature is presented in order to situate the current study and contextualize the knowledge gaps it addresses. there are four major sections in this chapter. the first section includes a definition of asd. this is followed by a description of the characteristics and social skill challenges faced by children with asd as well as a review on the impact that asd can have on the family. secondly, a brief description of hai and its benefits for neurotypical adults and children as well as children with asd is then provided. in addition, a review on the benefits of companion canines for children with asd is included. the third section describes attachment theory and how this theory could be applied to the human animal bond between children with asd and their companion canine. in the final section, research focused on human-animal bonding for children with asd is reviewed and described. . autism spectrum disorder . . defining autism spectrum disorder asd cluster of developmental disorders including asperger’s disorder, autistic disorder, pervasive developmental disorder - not otherwise specified and childhood disintegrative disorder have been combined into the new category of asd in the fifth edition of the diagnostic and statistical manual of mental disorders (dsm- ) (american psychiatric association, ). the previous version of the dsm, dsm-iv-tr ( ), classified each of the disorders listed above in separate categories and included a fifth disorder, rhett syndrome. with the release of the new dsm- , one of the most significant changes is that the separate diagnostic labels of autistic disorder, asperger’s disorder, and pdd-nos are replaced by one umbrella term “autism spectrum disorder” (american psychiatric association, ). this is in response to the need for a greater understanding of asd (autism speaks, ). the earliest publications on autism described atypical behaviours between child and adult social interactions, documented the presence of repetitive object use and insistence on sameness, and distinguished between autism and childhood-onset schizophrenia (asperger, ; kanner, ). the observations made by dr.’s asperger ( ) and kanner ( ) remain relevant today and have shaped the current definition of autism (ousley & cermak, ). the use of the term “autism spectrum disorder” reflects the idea that the core features of asd can be measured dimensionally and that they fall along a continuum of severity (grzadzinski, huerta, & lord, ). prior to the publication of the dsm- , children with an asd diagnosis were specified by a level of functioning identified according to specific criteria in the dsm-iv-tr (american psychiatric association, ). levels of functioning ranged from high-functioning asd to low functioning asd ( th ed., text rev.; dsm–iv–tr; american psychiatric association, ). with the release of the new dsm- , distinctions are now made according to severity levels (american psychiatric association, ). the first two core criteria include: ) an impairment in reciprocal social communication and social interaction; and ) restricted, repetitive patterns of behaviours, interests, or activities (center for disease control and prevention, ). the severity levels are based on the amount of support required by the individual due to challenges with social communication as well as restricted interests and repetitive behaviours (american psychiatric association, ). for example, an individual might be diagnosed with asd, level (support required), level (substantial support required), or level (very substantial support required); (american psychiatric association, ). in the dsm- , in addition to evaluating the two core asd domains, the characterization of asd involves specifying whether or not intellectual and language impairments are present (american psychiatric association, ). further specifications include: whether or not the individual’s diagnosis is associated with a known medical or genetic condition or environmental factor; whether or not the individual’s diagnosis is associated with another neurodevelopmental, mental, or behavioural disorder; and whether or not the individual’s diagnosis is associated with catatonia (center for disease control and prevention, ). according to the dsm- (american psychiatric association, ), the defining characteristics of asd include deficits in each of the following four criteria (a, b, c, & d): a. persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all of the following: . deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction, . deficits in nonverbal communicative behaviours used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body- language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures. . deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behaviour to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people b. restricted, repetitive patterns of behaviour, interests, or activities as manifested by at least two of the following: . stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypes, echolalia, repetitive use of objects, or idiosyncratic phrases). . excessive adherence to routines, ritualized patterns of verbal or nonverbal behaviour, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes). . highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests). . hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects). c. symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities) d. symptoms together limit and impair everyday functioning (pp. - ). . . characteristics of autism spectrum disorder according to the dsm- (american psychiatric association, ), asd is characterized by persistent deficits in social communication and social interaction across multiple contexts. this includes deficits in social reciprocity, nonverbal communicative behaviours used for social interaction, and skills in developing, maintaining, and understanding relationships. in addition to social communication deficits, a diagnosis of asd requires the presence of restricted, repetitive patterns of behaviour, interests, or activities (e.g., repetitive use of objects, excessive resistance to change, preoccupation with unusual objects, excessive smelling or touching of objects). within the diagnosis of asd, individual clinical characteristics are noted through the use of specifiers (i.e., with or without accompanying intellectual impairment; with or without accompanying structural language impairment; associated with a known medical/genetic or environmental/acquired condition; associated with another neurodevelopmental, mental, or behavioural disorder), as well as specifiers that describe the autistic symptoms (i.e., age at first concern; with or without loss of established skills; severity). these specifiers provide clinicians with an opportunity to individualize the diagnosis and communicate a richer clinical description of the affected individuals (autism speaks, ). impairments in verbal and nonverbal communication, age-specific play patterns, social interactions and restricted patterns of behaviour are key features indicative of asd (berry et al., ). the most disabling challenges are limitations in social skills, which can include, but are not limited to the following areas: social reciprocity (a range of back-and-forth actions, such as gestures, sounds, play, attention, and conversation), non-verbal communication and both the development and maintenance of relationships (leach & larocque, ; o’haire, ). . . social skills of children with autism spectrum disorder social limitations represent the most pervasive characteristics of children with asd often leading to difficulties establishing adult-child and peer-peer bonds (autism canada foundation, ; johnson, ; o’haire, ). although children with asd range in their severity levels, deficits in the ability to socially interact and engage with others remain consistent (chamberlain, kasari, & rotheram-fuller, ). thus it is common across severity levels to and represents an important area to address for children with asd. given these findings, it is of utmost importance to develop new strategies and identify therapies in which children with asd can enhance their social skills in order to successfully participate in their environments and develop skills necessary for future employment opportunities (johnson, ). interventions based on improving social skills, communication and reducing problematic behaviours (e.g., tantrums and repetitive behaviours) currently represent the most effective tool for asd management (vismara & rogers, ). furthermore, addressing social skill deficits and problem behaviours with asd may be an effective approach to reducing parental stress (carlisle, ; ). despite the large and varied number of behavioural and developmental interventions that exist, no one method has proven to be universally effective for the treatment of asd (berry et al., ). therefore, the need for further research is imperative in order to identify alternative approaches to support children with asd. . . impact of asd on the family having a family member with autism may present particular challenges for the family unit (kaminsky & dewey, ). such challenges include accommodation of inflexible daily routines, management of sudden mood changes and tantrums, and management of withdrawal during social interactions (heiman & berger, ; macks & reeve, ). asd therefore affects the individual diagnosed with the disorder as well as the family in a variety of ways (macks & reeve, ). for this reason, neely-barns, hall, roberts, and graff ( ) referred to families who have a member with asd as families living with asd. a number of studies have examined the effects of asd on the family (e.g., altiere & von kluge, ; dabrowska & pisula, ; degrace, hoffman, hutson & kolobe, ; ekas & whitman, ; weitlauf, vehorn, taylor, & warren, ). degrace and colleagues ( ) conducted a qualitative study to explicate the experiences of living everyday life following the diagnosis of autism. seven families were interviewed using grounded theory methodology, a systematic methodology involving the construction of theory through data analysis. the families’ experiences aggregated into a three phase model: ) experiences; ) mediators; and ) family outcomes. degrace and colleagues ( ) used the term ‘navigating the unknown’ to collectively describe the families’ experiences following the diagnosis of their child. the unknown was defined as a phase of questioning, feelings of uncertainty, and worrying. these feelings could stretch from utter confusion on how to manage their child’s behaviour and accommodate everyday tasks, to tentative feelings on how to implement new ways of doing things as a family unit. this study revealed that the prevailing experience of these families was the feeling of “not knowing.” in an exploratory study by nealy, o’hare, powers and swick ( ), the authors examined mothers’ perspectives of asd. qualitative semi-structured interviews with mothers were conducted and four primary themes emerged. prevailing themes of loss and depression were apparent. as well, reduced opportunities for fun and recreational activities, changes in social relationships, and personal sacrifices became evident as issues affecting the well-being of mothers of a child with asd. this study sought to identify ways of supporting families impacted by autism. based on their findings, nealy and colleagues ( ) recognized that there is a need to utilize alternative strategies and provide services that focus on family well-being in order to support the family unit as well as the well-being of each family member. to further explore the impact of asd on the family unit, ekas and whitman ( ) used a daily diary methodology to examine the daily stress and coping in mothers with a child with asd. this study sought to assess the day-to-day impact of child related stress on maternal negative affect. through the use of daily diaries, this study found that mothers of children with asd experienced increased negative affect. however, when mothers experienced above average stress due to both life stressors and child stressors, there was a decrease in negative affect. this finding suggests that when mothers who have a child with asd experience high levels of stress in multiple domains of their life, they eventually seek out supports and resources to cope and seek relief (ekas & whitman, ). in addition, ekas and whitman ( ) identified that increased positive affect served as a protective factor for mothers who have a child with asd. despite these findings, intervention strategies designed to help mothers generate positive emotions during stressful times are meagre (ekas & whitman, ). strategies that are available tend to teach mothers how to cope with their child’s challenging behaviours (e.g., sofronoff & farbotko, ) rather than assisting mothers in addressing the other numerous challenges and daily obstacles that often occur (ekas & whitman, ). overall, researchers suggest that having a family member with asd can present a range of distinct challenges on the family unit. families, and especially mothers, living with children with asd experience high levels of stress (degrace et al., ; nealy et al., ). further research examining the complex interplay of factors contributing to the stress and challenges for families impacted by asd is needed (cridland, jones, magee, & caputi, ). an investigation of coping and support mechanisms to alleviate the stress experienced by families living with asd is warranted (cridland et al., ; mackinnon, ). support from companion canines can be one source of support for these families (e.g., berry et al., ; carlisle, ; sams, fortney, & willenbring, ; o’haire, ). evidence for the idea that the addition of a companion canine can act as an informal therapeutic intervention for both the family and the child living with asd is found throughout human-animal literature. the effects of companion animals, and especially companion canines, on reducing stress are presented next. . human-animal interaction . . benefits of human-animal interaction the field of hai explores the bond between humans and animals and the role the human- animal bond plays in empathy development, social development, the ability to form and express attachments, reaction to grief and loss, the challenges of aging, and other developmental passages throughout the lifespan (human-animal interaction, ). in addition, the field of hai examines the role of aat in prevention and intervention programs within a variety of settings (human-animal interaction, ). although it is still a relatively new area of research, there is ample and emerging empirical evidence supporting the therapeutic benefits of animal companionship. the human- animal bond has long been documented and is a well-known phenomenon that has existed since humans began domesticating animals (turner, ). the benefits of the human-animal bond are widely reported in literature for typically developing children and adults (e.g., cole, gawlinski, steers, & kotlerman, ; fine, ). researchers have identified that hai can influence psychological (cole, gawlinski, steers, & kotlerman, ; jofre, ), physiological (havey, vlasses, vlasses, ludwig-beymer, & hackbarth, ; kaplan & ludwig-deymer, ; friedmann & thomas, ), and social-psychological parameters important to health and well-being (banks & banks, ; johnson, ). many studies have addressed the contribution of hai to human psychological well-being. findings have revealed that hai can decrease stress (allen & blascovich, ), increase emotional support and sense of psychological well-being (straede & gates, ), and increase resilience during times of adversity (mulcahy & mclaughlin, ). in addition to psychological benefits, researchers have also reported on the physiological and social psychological benefits of hai (e.g., fine, ; friedmann & thomas, ; mcnicholas & collis, ). researchers have argued that aat and companion pets can enhance social well-being for typically developing children and adults (friedmann & son, ; mcnicholas & collis, ; o’haire, mckenzie, mccune, & slaughter, ). in a study by o’haire and colleagues ( ), the researchers investigated the effects of a classroom-based animal-assisted activities program using guinea pigs was examined. participants randomly selected to be in the experimental group were enrolled in the animal- assisted activity program. participants in the experimental group (n = ) compared to participants in the waitlist control group (n = ) demonstrated significantly greater improvements in social functioning. social functioning was defined by greater increases in social skills and decreases in problem behaviours. in a study by mcnicholas and collis ( ), the authors found that canines act as social catalysts by facilitating social interactions and increasing interpersonal interactions and connections. they measured this effect by recording the number and quality of interactions experienced by a canine handler when in public with a canine compared to interactions without a canine. when the canine was present, the length and frequency of social interactions increased. additionally, friedmann and son ( ) reviewed studies examining the human- companion animal bond and concluded that companion animals can provide social support by facilitating social interactions thereby reducing social isolation and psychological distress. johnson ( ) also identified psychosocial benefits from hais including reduced feelings of depression, loneliness, and anxiety. for individuals with disabilities, who may be socially avoided by others and therefore experience social isolation and feelings of loneliness, the role of animals as social catalysts is especially important. children with asd face unique challenges establishing adult-child and peer-peer due to social interaction and communication deficiencies (ekas & whitman, ; o’haire, ). in the following section, research detailing how companion pets, and especially canines, have the potential to enhance social skills by providing social support, reducing stress and facilitating social interaction is presented. . . autism spectrum disorder and human-animal interaction there is ample empirical evidence supporting the therapeutic benefits of animal companionship. given the established benefits of hai, it is not surprising that researchers in child development have found that animals can play a vital role in a child’s life. interactions with pets can contribute to the development of the sense of self, imagination, play, empathy, and social responsibility in children (ascione ; fine, ; jalongo, ; melson, ; solomon, ). the beneficial effects of animals on severely withdrawn children date back to the s (berry, borgi, francia, alleva, & cirulli, ). dr. boris m. levinson ( ), a renowned psychologist and founder of the modern pet therapy movement, recognized that playful interaction with canines could improve sociocommunicative abilities of children with autism. he believed that the use of a well-trained animal could serve as a catalyst to help children deal with emotional and behavioural problems. levinson’s ( ) recognition of animals’ potential as communicative partners and their ability to provide emotional support was perhaps the foundation for the first use of canines as therapeutic adjuncts (solomon, ). individuals with autism may exhibit behaviours toward animals that they do not exhibit toward their family (mcnicholas & collis, ). for children with asd, handling social relations can be challenging (bystrom & persson, ). because of these challenges in establishing and maintaining social connections, bonding with a companion animal may lead to opportunities to practice social interactions and facilitate subsequent social connections to others (bystrom & persson, ). temple grandin ( ), a renowned author, lecturer, and animal behaviour expert, has written extensively about her experiences with autism and her ability to relate to animals. grandin and her colleague johnson ( ), hypothesized that people with asd and animals share cognitive similarities. animals rely on their sensory-based thinking (visual, auditory, and tactile senses) in order to gather information regarding their surrounding environments (grandin & johnson, ). individuals with asd, and in particular non-verbal individuals, have difficulty comprehending the thoughts and feelings of their peers and will negotiate their environments through the use of sensory-based thinking (grandin & johnson, ). children with asd have been described as having a deficit in theory of mind; the ability to understand the thoughts or intentions of others (baron-cohen, ). although animals are interactive, children perceive them as non-judgemental participants and are not influenced by the expectations of typical human relationships (friesen, ). the absence of the necessity to “read” a canine’s mind may provide an explanation for the increased ability of a child with asd to interact in a social way with a canine (solomon, ). this unique interaction offers typical and atypical children a valuable form of social and emotional support (friesen, ). the human-animal bond transcends companionship. it is a strong, positive and mutual interaction between humans and animals that has the potential to provide emotional support and comfort as well as affection (berry, borgi, francia, alleva, & cirulli, ). human-animal therapeutic interventions based on utilizing these emotional aspects of human-animal relationships have the potential to represent an effective tool to diminish the withdrawal of children with asd by targeting the core symptoms of the disorder (e.g., impairments in verbal and nonverbal communication, social interactions and restricted patterns of behaviour); (berry et al., ). a meta-analysis of studies investigating aat by nimer and lundahl ( ), found that its use led to improved behavioural symptoms of asd, and canines were the type of animal associated with the most significant benefits. the simple interpretable feedback behaviours that characterize animals, especially canines, facilitate social interactions that do not require the interpretation of verbal cues (solomon, ). this nonverbal engagement is especially important for children with asd given their potential difficulties participating in social interactions requiring verbal exchanges (solomon, ). . . service and therapy canines for children with autism spectrum disorder burrows, adams and spiers ( ) studied the effects of service canines on the general welfare of ten families affected by asd. the primary function of integrating service canines into these families was to ensure safety by inhibiting children from bolting and wandering dangerously (e.g., walking in the middle of a road). their findings extended beyond children’s physical safety to communicative and therapeutic realms (burrows et al., ). parents reported that the integration of a service canine resulted in beneficial effects on children’s behaviour including reduced levels of anxiety and emotional outbursts, increased calmness and overall happiness, and more manageable bedtime routines. parents also reported an additional sense of security due to the presence of the service canine. furthermore, when outside of the home, the service canine became the focus of attention alleviating some of the stress felt by the family and the siblings during social activities. in another study examining the therapeutic use of service and therapy canines’ for children and teens with autism, solomon ( ) conducted two case studies investigating how canines mediate social engagement of children with asd. the findings of this study illustrated how canines can support and encourage children’s communication, emotional connection with others, and participation in everyday life. the author described how canines’ participation in social interaction can support the sociality of children with asd. for a child with asd, sociality refers to the quality or state of being social and interactive with others (solomon, ). it was concluded in this study that canines have the ability to elicit prosocial behaviours and seem to possess a unique capacity to serve as an emotional bridge and act as social catalysts. in another study by viau, arsenault-lapierre, and fecteau ( ), the physiological effects of owning a service canine for a child with asd were examined. viau and colleagues ( ) measured cortisol levels, a stress hormone, by taking saliva samples before, during, and after children with asd interacted with a service canine. the aim of this study was to examine whether the effects of a service canine altered the levels of cortisol and the cortisol awakening response (car) in a child with asd. car responds to an increase in cortisol secretion and is an indication of stress and disease (viau et al., ). the authors found that car decreased upon introduction to the canines and increased after removal of the canines. these findings suggest that car is sensitive to the presence and absence of a service canine for children with asd. in addition, parents also reported that problematic behaviours (e.g. repetitive behaviours, aggression, tantrums) decreased when the canines were present (viau et al., ). in another study exploring how canines can modulate the behaviour of children with asd, silva, correia, lima, magalhaes, and de sousa ( ) conducted a case study on a year old boy diagnosed with asd (n = ). the participant participated in forty-five minutes of structured sessions of one-to one activities with the therapist in the presence of a therapy canine or without the presence of the therapy canine (as a control). the behaviour of the participant was continuously video-recorded during both experimental and control conditions to allow for cross condition comparisons. in the presence of the canine, negative behaviours decreased (e.g., physical and verbal aggressive behaviours, repetitive behaviours) and positive behaviours increased (e.g., smiling, play, positive physical contact, affection). in another study examining the effects of canines on the behaviour and social skills of children with asd, martin and farnum ( ) observed children’s social behaviour when interacting with a live canine (treatment ) compared to a stuffed canine (treatment ) or toy ball (controlled condition). their findings revealed that children with asd were less distracted and more aware of their social surroundings when the live canine was present during their therapy session. furthermore, children were most likely to engage in conversation and initiate focused eye gaze when the live canine was present. the studies reviewed here provide a foundation for the present investigation and identify the beneficial effects of integrating a service and/or therapy canine into the care plan for a family impacted by asd. language impairments and social deficits are the most pervasive symptoms characterizing children with asd (berry et al., ). interaction with a therapy and/or service canine proves to be an effective tool in promoting verbal and nonverbal behaviours as well as decreasing problematic behaviours (berry et al., ). however, as previously identified, therapy canines are trained to work for a handler to provide service and comfort for other people. therefore, therapy canines are only temporarily available to spend time with a child with asd and do not become a permanent part of the family unit. furthermore, the high cost and long wait-list for a highly trained service canine become a deterrent for most families leaving them to turn to less vetted means of finding canines for their children. being one of the most popular pets in north america, companion canines (a family pet with not specific training or certification) often become the canine of choice for families impacted by asd (coltea, ). it is important to stress however, that the studies reviewed in this section focus on the beneficial effects of service and therapy canines for children with asd. there are only two peer-reviewed studies (e.g., bystrom & persson, ; carlisle ; ), discussed in the following section, that have examined how children with asd benefit from the presence of a companion canine on an everyday basis within their family lives. . . companion canines for children with autism spectrum disorder emerging work by bystrom & persson ( ), used focus-group discussions to understand parents’ perspectives on how children and adolescents with asd benefit from a companion animal. three main themes emerged in this study regarding the importance of companion animals for children with asd: ) the quality of the relationship with the companion animal; ) increased interaction with people; and ) optimization of the child’s function and development. the relationship shared between these children and their companion animals were categorized as close or general. close relationships were characterized by mutual contact and signs of affection (e.g., petting, snuggling, and grooming) whereas general relationships were characterized by children who were more content when their companion animal was nearby however, did not seek contact or display obvious signs of affection. findings also revealed that social interaction and contact with other children was facilitated when the children were in the presence of a canine (bystrom & personn, ). companion animals, especially canines, were found to reduce social anxiety and give the child the courage to respond to people who initiated contact with them. additionally, parents reported that the companion animal reduced stress, helped regulate emotions and depression, and provided support through challenging life events. the quality of the child-animal relationship was found to enhance these positive effects when their relationship was characterized as being close. although this study did not identify what might influence the strength of the relationship shared between these children and their companion animal, the present findings support the notion that companion animals can provide social and behavioural support and improve mental health and quality of life for children with asd. canines in particular were reported to have the most significant impact on helping children with asd socially interact with people outside of the family. in her doctoral dissertation ( ) and subsequent publication ( ), carlisle examined the role of pet canines in families of children with asd. in this descriptive study, data was collected through a telephone interview with both parents (n = ) and children (n = ). parents who decided to integrate a pet canine into their family described having previous experience with canines and beliefs in their beneficial effects for children with asd as influential in their decision-making process (carlisle, ; ). the companion animal bonding scale (cabs), a survey used to identify the quality of human and pet relationships and attachment to pets, was administered to the children participants to assess information regarding child-canine bonding. increased interaction time, positive affect (e.g., they say they love their canine), positive ideas about their canine (e.g., their canine provides support and companionship), and positive behaviour towards their canine (e.g., active play) were identified as primary interactions influencing the bonding process. carlisle’s work ( ) examining the topic of bonding between family companion canines and children with asd, suggests that children’s social skills may be enhanced, particularly around exercising assertion (e.g., making requests, expressing views or opinions). carlisle’s study adds additional evidence that for children with asd, the ability to establish a secure attachment with a canine may increase their ability to seek social relationships with others (carlisle, ). . attachment theory and the human-animal bond john bowlby was the first attachment theorist ( , , ). understanding attachment formation in children has since been a focal point in child development research. attachment theory was proposed by john bowlby ( , , ) and advanced by ainsworth’s ( ) work on how the bond between a mother and child may extend to other attachments a child makes as he/she matures. the bonding process in humans using attachment theory as a framework have been well researched. studies investigating its application on human-animal bonding have also been conducted (e.g., beck & madresh, ; kurdek, ; kwong, ). three distinct areas comprising attachment theory support the present investigation and include: ) attachment theory and its application on human-animal bonding for adults and children; ) attachment theory and its application on human-animal bonding for children with asd; and ) influences on the canine-human dyad. one of the major challenges with research in this area has been the lack of theoretical rigour in relation to the ideas, concepts and definitions that underpin the notion that humans can form strong attachments to animal companions (beck & madresh, ; hosey & melfi, ; rockett & carr, ). employing attachment theory in the exploration of human-animal bonding provides researchers with a conceptual framework (rockett & carr, ). as an example of research investigating the human-animal bond, kurdek ( ) examined the extent to which the four features of attachment (i.e., proximity seeking, separation anxiety, safe haven, and secure base) are exhibited in human-canine relationships. kurdek ( ; ) applied attachment theory to study human-canine bonding by asking participants to indicate how strongly ( = strongly disagree, = strongly agree) they agreed with four statements for each of the four features of attachment regarding their pet canine. his results suggest that canines satisfy these four attachment functions. however, kurdek identified that proximity seeking was the most salient function of attachment and safe haven the least salient. despite the variation in attachment functions, kurdek ( ) concluded that humans can form attachment with animals that are consistent with the human literature on attachment theory. a secure attachment to a primary caregiver is one of the first and most basic needs in an infant’s life (bowlby, ). in a study investigating attachment security, beck and madresh ( ) sought to compare how secure participants felt in their relationship with their pets versus their romantic-partner. a web-based survey of pet owners was conducted. their results revealed that pets were a consistent source of attachment security. pet owners claimed to experience more security in relationships with their pets than with their partner. the authors speculate that the reason for this finding could be attributed to the idea that companion animals can provide a consistent, controllable and dependable source of security than is provided in relationships with humans. building from these findings, kwong and bartholomew ( ) explored individual relationships with a service canine. semi-structured interviews were used to assess the extent to which the four features of attachment were evident. this qualitative study employed thematic methods to analyze semi-structured interviews with participants regarding their relationship with their service canines. findings from this study revealed that the most salient characteristics of attachment between an individual and his/her service canine were safe haven and secure base. their research demonstrated that animals can fulfill all attachment figure functions. however, it must be noted that the specific characteristics of this relationship (e.g., the participants have a disability that requires assistance from their service canine) might influence the human-animal bond in a distinct way. for example, the participants are more reliant on their service canines therefore increasing the likelihood of developing a bond that reflects an attachment bond. the notion that animals are capable of providing safe haven and secure-base functions was supported in a study by zilcha-mano, mikulincer, and shaver ( ). pet owners were asked to perform one of two distinct tasks to assess the extent to which a pet canine can provide safe haven and secure base. study consisted of pet owners who were asked to perform an exploration activity which consisted of thinking about their future goals. participants who were in the physical presence or cognitive presence (i.e., thinking about their pet) of their pet generated more goals and reported greater confidence in attaining these goals than the participants with no pet presence. study consisted of pet owners who were asked to perform a distress-eliciting task (i.e., an extremely difficult cognitive task). participants who were in the physical or cognitive presence of their pet exhibited lower blood pressure elevation during the distressing task than the participants in the no pet presence condition. findings revealed that the presence of a companion animal (canine or cat) was sufficient to heighten self- confidence, lower distress and increase task performance in participants compared to participants not in the presence of an animal. the findings lend support to the contention that a pet provides safe-haven and secure-base functions. to date, most studies examining the development of human-animal attachments have focused on adults’ interactions with the canines that they own rather than on children (jalongo, ). much less is known about the development of a relationship between children and their companion animals (westgarth et al., ). in one study by melson ( ), the author described human-animal attachment between children and their pets using a four component model. each component provides insights into the quality and strength of the bond and included: ) “time with pet; ) affect toward pet; ) ideas about pet; and ) behaviours toward pet” (melson, , p. ). following melson’s ( ) four component model, carlisle ( ; ) found that increased interaction time, positive affect, positive ideas about their canine, and positive behaviour towards their canine were associated with a stronger bond. in a study by daly and morton ( ), findings revealed that elementary school aged children who reported to be more attached to their pets were more empathetic to others (daly & morton, ). in studies examining pet attachment and gender differences, girls were more likely to own a pet, however, boys were just as likely to be attached to their pets as girls (stevens, ; westgarth et al., ). this is important to note given that asd is almost times more common among boys ( in ) than among girls ( in ) (centers for disease control and prevention, ). however, the topic of human-animal bonding for children with autism remains largely unexamined and even the studies done to date are wrought with sampling and methodological limitations. for example, carlisle ( ; ) administered cabs via a telephone survey to gather information regarding child-canine bonding for children with asd. given that children with asd often face challenges in their ability to socially interact and engage with others, data collection methods such as telephone interviews and surveys are often inappropriate to use for this particular population. although studies examining how children bond with their animal companion and more specifically, how children with asd bond with their animal companion remains meagre, several studies have investigated what might influence the human-animal bonding process in typical children and adults. in kurdek’s ( ) study, the author found that high levels of human caregiving were associated with high levels of attachment to canines. in addition to this study, caregiving was also found to be an important feature contributing to the development of strong human-canine bond in kwong and bartholomew’s study ( ). this suggests that caregiving toward a canine may facilitate the formation of a mutual bond (kurdek, ). this aligns with bowlby’s ( ) notion that the attachment behavioural system is complimented by reciprocal caregiving. in addition to these findings, cohen ( ) identified that the more time adults spent with their pets, the more likely they would report a strong bond with their pets. drawing from broader child-pet literature, several findings inform our understanding of factors contributing to strong child- canine bonds. melson ( ) posits that children are more likely to establish a strong bond with their companion animal when they are involved in caring for it. for example, when children are involved in grooming, feeding, watering, exercising, and playing with their canines a stronger bond is more likely to develop (myers, ). additionally, in another study examining pet attachment in grade school children, it was identified that when children played with their pet and were involved in pet care, a stronger attachment was more likely to develop (melson, peet, & sparks, ). . summary and conclusion this review of the literature argued that attachment theory is an appropriate framework supporting the investigation of the human-animal bond. however, there has been limited investigation on the human-animal bond for children with asd. more specifically, the mechanisms or pathways through which child-canine bonding occurs remains largely unexamined and a nuanced understanding of the human-animal bond for children on the spectrum has yet to be identified. there is a particular lack of research investigating children within the context of everyday life, including family influences that potentially impact the bonding process (hosey & melfi, ). to address these gaps, this study will examine the triad relationship between the child, the canine, and the family as a means to identify what might influence a child on the spectrum's ability to bond with a companion canine. for a child with autism, an attachment to a canine companion may provide a positive relationship experience, provide opportunities for social skill development and in turn, increase the willingness of these children to seek out other social relationships. currently, data collection methods in the field primarily rely on formats that do not directly involve children themselves and are often inaccessible to children, particularly, for children with asd (e.g., surveys, telephone interviews, detailed representational drawings) (jalongo, ). methods including direct observation, individual interviews, and the use of photographs and drawings are needed given the nuanced interactions that exists to indicate the presence or absence of bonding (e.g., proximity, frequency of interactions, initiations of interactions, touch). without the use of appropriate methods that are accessible to this population, children with asd will continue to be under-represented in the research (hosey & melfi, ; jalongo, ). to address this issue, this study employed semi-structured interviews with the parents as well as observations of child- canine interactions in order to gain insights into factors contributing to the bonding process. chapter – research methods this chapter begins with a discussion of the rationale for the research design followed by a description of the research methods that were employed in this study. the first section includes a brief review of the purpose of the study and an outline of the research questions that guided this investigation. this is followed by an overview of qualitative research and why this paradigm was best suited for this particular study. the final section details the selected case, the research sample, data collection procedures, approaches to data analysis, and how the fidelity of this study was ensured. despite enthusiasm for integrating companion canines into the care plan for children with asd, research examining factors that might influence children on the spectrum’s ability to bond with a companion canine is lacking (berry et al., ). further investigation into the process of the human-animal bond is needed; specifically, the process of the human-animal bond for children with asd. the choice of a qualitative case study methodology responds to, and is best suited to address, the limitations identified in the hai literature reviewed in the previous section and is in alignment with research needs identified by key writers in the field of hai (e.g., berry, borgi, francia, alleva, & cirulli, ; fine, ; millman, adams, & burrows, ; o’haire, ). we currently lack an understanding of what might influence a child with asd to bond with his/her companion canine and what attachment looks like across cases. given the nuanced interactions that exist to indicate the presence or absence of bonding (e.g., proximity, frequency of interactions, initiations of interactions and touch) this study employed observations and interviews to gain insights into factors contributing to child-canine bonding. four areas requiring investigation have been identified for this study. these included: ) the identification of what, if any, components of attachment (e.g., safe haven, secure base, proximity seeking and separation anxiety) are evident in the relationship; ) the identification of physiological and temperamental characteristics of canines that contribute to their bonding with children with asd; ) direct observations of interactions between a child with asd and his/her companion canine; ) and the identification of strategies employed by families to facilitate child- canine bonding. the two overarching research questions that guided this study were as follows: . is there evidence that the attachment components of safe haven, secure base, proximity seeking, and separation anxiety are evident features of the child-canine relationship? if so, to what extent are these four features of attachment evident? . what are the prevalent themes emerging from interviews and observations of canine- child bonding? the aim of this research was to examine the dynamic, triad relationship between the child, the family companion canine, and the family unit. the objectives of this research were to observe child-canine interactions, identify strategies used to facilitate child-canine bonding and identify characteristics of children with asd, family companion canines, and families themselves that contribute to a successful child-canine bond. . rationale for a qualitative research approach due to the exploratory nature of this study and the paucity of research elucidating factors impacting the child-canine bond, a qualitative approach was deemed best suited to uncovering answers to the above-stated research questions. qualitative research is useful in generating new ideas and theories and examining an area where little is known and findings remain scarce (richards & morse, ). qualitative research is an inquiry process of understanding based on distinct methodological traditions of inquiry that explore a social or human problem. the researcher builds a complex, holistic picture, analyzes words, reports detailed views of informants and conducts the study in a natural setting (creswell, , p. ). given the dearth of research exploring the child-canine bond for children with asd, qualitative methods hold potential to uncover, identify and highlight key dimensions of the child- canine bond. further, qualitative methods, particularly those grounded in case study analysis and observations are best suited to the target population, children with asd and family canines. though the use of quantitative paper-and-pencil measures (i.e., public domain scales assessing various dimensions of parenting or child-parent bonding) could be used with parent participants, given the developmental challenges of the children in this study, the completion of quantitative surveys is unsuitable. the use of qualitative methods here holds the potential to advance our understanding of autism as well as inform researchers and practitioners about the nuanced interactions taking place within family contexts that facilitate child-canine bonding. . . rationale for a case study this study’s research questions necessitated a research approach that could identify factors that might influence the child-canine bonding process. the appropriate research approach, therefore, must take into account the everyday details and significant events of family interactions and do this in a way that is conscious of the contributions of all participants, both human and canine. given the subjective and contextually dependent nature of the human-animal bond, a case study approach was used to investigate the phenomena of bonding between children with asd and companion canines. . . case study a case study is an approach to research that focuses on gaining an in-depth understanding of a particular entity or event and emphasizes a detailed contextual analysis (stake, ). studies in the social sciences, in particular, have made wide use of this data collection strategy to examine real-life situations (cassell & symon, , ; stake, ). for example, case studies have been used to examine student motivation (shaffer, ), to investigate the social engagement of children with asd (conn, ), and to document and examine breast cancer survivors’ experiences (burke & sabiston, ). according to stake ( ), in order to understand complex social phenomena, investigators need to retain the holistic and meaningful characteristics of real-life events and the use of the case study approach allows this. case study research stresses the holistic examination of phenomenon (jorgensen, ) and seeks direct engagement with the social world and in- depth investigation through observations, interviews, documentary analysis and examination of artifacts (gomm, hammersley, & peter, ). the case studied may be a culture, society, community, subculture, organization, group, or phenomenon such as beliefs, practices, or interactions, as well as almost any other aspect of human existence (creswell, ). rather than being a methodological choice, a case study is a paradigmatically flexible approach (luck, jackson, & usher, ) that signifies an intensive focus on a particular case(s) (rosenberg & yates, ; sandelowski, ). employing a case study approach for the present study was fitting because of its particularistic nature. that is, the focus of this study was on a particular population (i.e., a family with a child aged - years with a confirmed diagnosis of asd and their family canine) (stake, ). stake ( ) identified three different types of case studies: ) intrinsic (used when the intent is to better understand that particular case. it is not undertaken to represent other cases or generalize a problem); ) instrumental (the purpose of the case is to facilitate understanding about something else outside of the case; it provides insight into an issue or refines a theory. the case is of secondary interest); and ) collective (involves more than one case; multiple cases are under study). because the focus of this study was on multiple cases ( families impacted by autism with a companion canine), this study is considered a collective case. due to the exploratory nature of my research, the use of a case study was well suited given that this approach is found to be most appropriate for exploring new processes, of which there is little understanding (baxter & jack, ). case studies also enable researchers to concentrate on the experiential knowledge of the case while paying close attention to the influence of its setting and social contexts (stake, ). for children with autism, the family system is the most important influence impacting how children develop, behave, and perceive their environment (cridland et al., ). when families integrate a canine companion into their home and view the canine as a family member, the family canine becomes a sub-system within the complex family system (jalongo, ). from this perspective, family canines become nested within the family social system and thus within my case. therefore, in order to gain an in- depth understanding of the child-canine bonding process i needed to investigate the experiential influences from within the family system in the setting of their home as part of my case, rather than in isolation from the family. . case selection case study research is a qualitative approach in which the researcher explores a bounded system (a case) or multiple bounded systems (cases) through detailed, in-depth data collection involving multiple sources of information (e.g., observations, interviews, audiovisual material, and documents and reports), and reports case descriptions and case-based themes (creswell, ). in order to ensure specificity for my study (i.e., that families met pre-specified criteria), each case consisted of: ) a family with a child aged - years with a confirmed diagnosis of asd; ) and their family canine. the child must have been receiving or had received autism funding which, according to criteria established by british columbia’s ministry of children and family development, requires a confirmed diagnosis of autism by a qualified specialist (i.e., paediatrician, child psychiatrist, or registered psychologist). the proposed levels of asd severity were chosen due to the increased ability for children diagnosed with level or asd to engage in verbal and nonverbal communication and comprehend social overtures (american psychiatrist association, ). the inclusion of a family canine who had not received specialized therapeutic training (as a service or a therapy canine) was established for this study as families, unwilling to be put on a wait list (recall that there is currently an - month waiting list for a service canine in british columbia) and/or unable to afford a trained service canine (costs of a trained service canine run $ , cdn; canadian national service canine, nsd, ), often seek canine therapeutic support via less formal channels. therefore, family canines were restricted to companion pets with no formal therapeutic or service training as this was determined to be representative of a typical family’s experience. the above-described criteria adhere to the specificity requirements for a case to be considered a bounded system (creswell, ) . data collection procedures in qualitative research, the researcher is most commonly considered the primary instrument for data collection, analysis, and interpretation (paisley & reeves, ). in this study, three main data sources were used to gather information related to the research questions: ) semi-structured interviews with the parent(s); ) field notes; and ) observations of child- canine interactions. in case study research, multiple rather than single methods of data collection are employed (creswell, ) to facilitate the full exploration of a phenomenon within a particular context (baxter & jack, ). “this ensures that the issue is not explored through one lens, but rather a variety of lenses which allows for multiple facets of the phenomenon to be revealed and understood” (baxter & jack, p. ). the strategic use of multiple sources of data is referred to as triangulation (mills, ). sources of data used for triangulation in this study included semi-structured interviews with the parents, observations of child-canine interactions, and field notes, and collection of artifact that represented the child-canine relationship (e.g., photographs and videos of the child interacting with the canine companion). the advantage or strength of triangulation is that it affords opportunities to compare and cross-validate findings derived from distinct data collection methods (creswell, ). furthermore, triangulation helps to safeguard against distortion and bias by using multiple data sources thus strengthening the credibility of subsequent claims that arise (merriam, ). because case study research seeks direct engagement with the social world and in-depth investigation through interviews, observations, and examination of artifacts (gomm, hammersley, & peter, ), an intimate examination of the dynamic relationship between the child, the canine and the family was enabled through case study research. . research sample . . recruitment procedures and consent six families meeting the specified criteria for participation in this study were purposively selected. the proposed sample size for this study was determined based on recommendations by guest and colleagues (guest, bunce, & johnson, ) that “a sample of six interviews may be sufficient to enable development of meaningful themes and useful interpretations, especially when group differences are not sought” (p. ). furthermore, case studies that use more than one method of data collection require fewer cases (mason, ). in the end, the optimal number of cases is determined when saturation is reached - the point at which new information or themes observed in the data do not add anything to the story (mason, ). strauss and corbin ( ) concluded that the longer the researcher examines, familiarizes and analyzes the data there will always be the potential for the new to emerge. therefore, saturation should be more concerned with reaching the point where “the newly discovered” does not add anything to the overall story. as mason ( ) suggests, it is the point when continued analysis of the data does not generate additional findings or insights about the particular research questions. . . participant recruitment in compliance with university ethics, parents provided written consent to participate and children provided verbal assent. participating families received a $ cash honorarium as an incentive for their participation. families were recruited from within the municipality of a mid- sized western canadian city. to ensure that the majority of canine-owning families had an equal chance to participate in this study, flyers were posted at the eight on/off leash canine parks throughout the city for four weeks. these flyers were, in turn, circulated via social media by both the researcher and via informal sharing by the public (e.g., photos of flyers were posted on autism support groups on facebook; see appendix h). interested individuals e-mailed the researcher to receive a document outlining and describing the research project and its aims (appendix g). individuals were then invited to contact the researcher via email or telephone, at which time, they were screened for eligibility and invited to participate if they met eligibility criteria. the first six families meeting eligibility criteria were then invited to participate in the study. prior to scheduling the interview, a pre-visit was offered to each family. the pre-visit was offered in order to provide an opportunity for introductions and build rapport between the researcher and each participating family. although the option to schedule a pre-visit was given, each family respectively declined as each felt it was unnecessary. next, a time and date were scheduled to capture a representative or typical experience during which the interview could be conducted and observational data collected. . . interviews the primary form of data collection was in-depth, semi-structured interviews with the parent(s). conducting these interviews in a semi-structured fashion ensured that all participants were asked the same questions so that a cross-comparison of all participants’ responses could occur which helped generate particular patterns of information and significance. semi-structured interviews allowed the researcher to be guided by a list of questions and topics that could be explored based on the participant’s responses without necessarily following the exact wording of the interview questions (merriam, ). all of the interviews were conducted in the participants’ homes. the interviews were conducted individually in a single session with the participants choosing a time that was most reflective of a typical family experience. to collect descriptive information, a brief questionnaire was administered to parents prior to the interview in order to obtain demographic information regarding their family, their child’s asd diagnosis, previous experience with animals, and information about their companion canine (see appendix e). the interviews lasted, on average, minutes (i.e., range = - minutes). it was expected that the interviews would vary in length due to differences in the child-canine relationship and how this relationship was situated within the family. in addition, some participants spoke at length when prompted whereas in ’s case, a variety of questions and approaches to address topics were used due to these participants providing brief responses. in the six interviews, the participants’ child/ren with asd were present. in five out of the six interviews, the child’s siblings were also present. the children were free to participate and contribute to the interview if they wanted to, however interview questions were directed primarily to parents not children. the interviews began by asking the participants to read the informed consent forms (appendix a, b, c and d) with the researcher, which described the research project and the procedures that insured confidentiality and anonymity of the data collected (the form was also sent by e-mail prior to the meeting). a verbal overview of each form, highlighting that participation was voluntary and that participants had the right to withdraw from the study at any point and could elect to withdraw some or all of the information they provided without any consequences was then provided. signed consent was obtained for participating in the interview and for allowing the interview to be audio-recorded (appendix a) and verbal assent was obtained from the child/ren with asd for participating in the study (appendix c). additional consent forms (appendices b & d) were provided for other participants who might be present during the study (e.g., siblings, grandparents, and friends). none of the participants declined to participate in the study or to have the interviews audio-recorded. . . field notes field notes were recorded immediately following each interview. this provided an opportunity for the researcher to reflect and include additional information regarding the interview process, characteristics of the child, characteristics of the companion canine, characteristics of the family unit, and any additional information offered by the participants (i.e., one family discussed the need for the school system to allow children with asd be accompanied by their companion canine in the classrooms). field notes were also recorded during the collection of observational data. observational field notes consisted of highly descriptive information and were completed throughout the interview process and immediately following the observations. . . observations observation, unlike other research methods, does not depend on the research participant’s ability to understand or produce speech; therefore, as a research method, the use of an observational case study was well suited for gathering data on children with autism who may have limited verbal communication skills. observational data collected at one time point consisted of observing child-canine and family interactions. throughout this process, the researcher was an active participant, interacting with the other participants as part of the interview process. observational data of child-canine interactions was unstructured and representative of a typical experience shared between the child, the companion canine, and the family unit. observational data was gathered prior to, during, and following the interview, recording participant actions and behaviours (e.g., family interactions, canine behaviour, and child behaviour). observational data also included artifacts (e.g., photographs and videos of the canine) presented by the child/family. as suggested by kutsche ( ), observational data begins by first mapping out the setting (appendix i). mapping out the setting for this study included a count of attendees, a physical map of the interview setting and description of the physical surroundings, a description of the canine companion being observed, a description of the child with asd, and a description of the activities being observed, detailing activities of interest. observations were documented using field notes. . data analyses data analysis is a process that involves moving back and forth between concrete data and abstract concepts, as well as between description and interpretation (merriam, ). in order to address the two research questions driving this study, notably, “what features of bowlby’s attachment theory are evident in the child-canine bond?” and “what are the themes characterizing child-canine bonding”, a two-step process of data analysis was used. the first step in the process of analyzing the data involved transcribing the digitally recorded interviews and observation field notes into usable data. the transcribed data was then transferred to electronic documents and stored in the researcher’s computer as microsoft word™ documents. the transcribed data was then converted from word format into rich text file format in order to process and store them as nvivo™ (a software program specifically designed for qualitative data analysis) document files and use nvivo’s rich text and visual coding features. during the transcription process the researcher examined the data for patterns and preliminary notes were made as to potential codes. following transcription, a detailed reading and re-reading of the transcript for each case was conducted in order to become familiar with the data (sandelowski, ; spradley, ) and identify global or general themes from each data source that addressed the research questions. the second step in analyzing the data involved a more exhaustive process. in order to complete a more in-depth analysis the researcher first examined what, if any, features of attachment were prevalent in the child-canine bond using directed content analysis. then, the researcher sought to identify what personal and external factors influenced the child-canine bond and what interactions between the child, the family canine, and the family facilitated a strong child-canine bond using conventional content analysis. in the following sections, both conventional and directed content analysis are described. . . analysis of attachment theory using directed content analysis in order to identify what, if any, features of attachment were prevalent in the child-canine bonding process, bowlby’s ( , , ) attachment theory was used to help focus these particular research questions (e.g., questions regarding proximity maintenance, separation anxiety, safe haven, and secure base). using this existing theory allowed the researcher to ask open-ended questions followed by targeted questions about the predetermined categories of safe haven, secure base, separation anxiety and proximity maintenance. given that a strong theoretical framework does exist about this particular phenomenon, directed content analysis was used to analyze this section of the research study (hickey & kipping, ). using directed content analysis, findings across case studies were compiled to identify what, if any, components of attachment theory were evident in the child-canine bond. the findings from using directed content analysis offer supporting evidence for a theory (hsieh & shannon, ). using bowlby’s attachment theory, the researcher began by identifying key concepts as initial coding categories (potter & levine donnerstein, ). next, definitions for each category were determined using bowlby’s attachment theory (hsieh & shannon, ). bowlby’s four features of attachment served as a framework to identify what features of attachment were prevalent in the child-canine bond within and across cases. coding began immediately with the predetermined codes (i.e., proximity maintenance, separation anxiety, safe haven, and secure base). first, each case was analyzed individually (n = ) and coding frequency for each of the predetermined categories was counted using nvivo™. finally, a cross case analysis was done where the number of codes from each category were combined and a composite score was tallied (see table ). . . the identification of emerging themes using conventional content analysis given that existing theory and research literature on human-animal bonding in children with autism is limited and that themes describing the child-canine bond have not previously been identified in educational or psychological literature, conventional content-analysis was used to identify the personal and external factors influencing child-canine bonding including interactions between the child, the family canine, and the family unit. conventional content analysis involves a “systematic classification process of coding and identifying themes or patterns and is used to make sense out of participant generated data” (hsieh & shannon, , p. ). given the dearth of empirical work on child-canine bonding in children with asd, this approach offers advantages over other content analysis approaches (e.g., directed content analysis where predetermined thematic categories derived from prior research are used). using conventional content analysis, an individual case analysis was completed for each of the six cases in which initial global themes were developed. identifying the prevalent themes was done in two stages. first, each transcript from each case was reviewed independently by both the researcher and her supervisor, who identified general or global initial themes (e.g., canine acquisition, canine as family member, family profile). these themes were pooled across raters and resulted in general or global categories. the second step involved a winnowing process (wolcott, ) whereby global themes were discussed by raters and collectively grouped into thematic categories. this was done to reduce redundancy (e.g., “change to child behavior” and “benefits to child” were merged). this process resulted in a mean of themes. following the completion of an individual case analysis for each of the six cases, a cross case analysis was then done. using the identified themes from each individually analyzed case, the cases were then compared to determine if there were similar patterns and themes among them. these themes were then used for within and between case study comparisons in order to identify commonalities and differences. this process resulted in a total of themes. descriptions and examples of each theme were identified and listed next to the theme (e.g., theme = canine as family member; description = treatment of canine as part of the family unit; examples = allowed on furniture, permitted to sleep on the child’s bed, travels with family; see table ). finally, an individual case analysis was completed using the themes to identify the presence or absence of each theme within the individual cases (see table ). . . ensuring the fidelity of the study in order to maintain the fidelity of this study, tracy’s ( ) eight “big-tent” criteria for excellent qualitative research was used which includes the following end goals of high-quality qualitative studies: worthy topic; rich rigor; sincerity; credibility; resonance; significant contribution; ethical; and meaningful coherence. each of these markers of quality is described in table . table criteria to conduct high-quality qualitative research criteria execution in design . worthy topic a worthy topic for this study was ensured by being interesting, relevant, timely, and significant. my study sought to examine and identify how children with autism bond with their canine companion. this is an interesting, relevant, and timely area of study – to date, few studies have examined how children with autism bond with their canine companion and the process through which this bond occurs remains largely unexamined. “studies of little- known phenomena or evocative contexts are intrinsically interesting” (tracy, , p. ). additionally, this study has potential for significant practical and theoretical implications. this research holds promise to inform researchers about the nuanced interactions taking place within family contexts that facilitate child-canine bonding as well as the potential to inform parents who are seeking to support their children through the addition of a companion canine. . rich rigor high-quality qualitative research is marked by descriptions and explanations that are rich. richness is generated through a variety of theoretical approaches, data sources, contexts, and samples. this study exemplifies rich rigor through the thorough review of the literature that is presented. the rigor of this study extends beyond the rich review of literature to the way in which the researcher adapted to the complexity of the research topic by including a variety of data collection methods (e.g., semi-structured interviews, observations, and field notes). in addition, the sample and context of the study is appropriate given the goals of the study. furthermore, the researcher has familiarized herself with the theoretical approaches suitable for this study. for example, in order to conduct a study examining what personal and external factors might influence the child-canine bonding process, this study required insights from attachment and family systems analysis as well as the flexibility offered via case study methods. . sincerity sincerity in this study was ensured through self-reflexivity. self- reflexivity, one of the most important practices of qualitative research, is the act of being honest with one’s self, one’s research, and one’s audience (tracy, ). reflexive researchers are aware that they are bringing their own beliefs and experiences to the research project (rinaldi, ). throughout this research project, the researcher recognized that her presence and behaviour affected participants responses therefore, influencing the findings. therefore, the researcher was mindful of her impact and noted other’s reactions. transparency, being honest about the research process, was ensured through keeping an audit trial, documenting all research decisions and activities. . credibility credibility was achieved in this study through thick description and triangulation. thick descriptions were ensured through the data collection process and the description of findings in sufficient detail so that the audience can evaluate the extent to which the conclusions drawn are transferable to other people in similar contexts. rather than telling the reader what to think the researcher showed the reader by providing the audience with enough detail so that they can come to their own conclusions about the case(s), through text data, direct quotes, and artifacts presented by the participants. triangulation was accomplished by using multiple sources of data which allowed for different facets of problems to be explored, deepened understanding, and encouraged consistent interpretation (tracy, ). . resonance resonance refers to the ways in which a research study resonates with an audience (tracy, ). resonance is achieved when readers feel that the research story overlaps with their own situation. a key path to resonance is aesthetic merit (tracy, ). the researcher attempted to construct the text aesthetically by narrating the findings. qualitative narratives should aim to be vivid, engaging, and structurally complex, or, in short, a story that moves the “heart and belly” as well as the “head” (bochner, ). resonance also emerges through transferability, meaning that the study has potential to be valuable in similar contexts or situations. for families who are impacted by autism, it is hoped that the findings of this research holds potential to inform parents seeking to support their children through the addition of a canine companion. as i engage with the write up of the research report, i will be reflective as to who my audience is so that my research findings resonate with the readers. . significant contribution it is hoped that this study will make a significant contribution to literature in the field of hai by addressing research questions that were ultimately driven by the identified gaps in the literature. the case study methodology builds upon prior survey research examining child-canine bonding and offers unique advantages for identifying the salient characteristics of children, canines, and families which contribute to successful bonding. in addition, given the relative lack of research in the area of human- animal bonding for children with autism, it is hoped that this research will not only provide insights but also stimulate more questions and inspire future research topics. . ethical to ensure that this study was ethical, procedural, situational, relational, and exiting ethics were considered. procedural ethics were met by seeking ethics approval from the university of british columbia. participants were informed about the aim of the study and any potential consequences of participating in the research study, as well as understood that their participation was voluntary. in order to participate in the study, parents provided written informed consent and children provided verbal assent. as a method of procedural ethics, all data collected for this study was stored in password protected files and locked cabinets. the researcher engaged in reflexive journaling as data collection and analysis commenced in order to address situational ethics. in consideration of relational ethics, the researcher ensured that her interactions with research participants demonstrated reciprocity and mutual respect. to address exiting ethics, the researcher ensured that the participants’ remained anonymous in the write up of the results. . meaningful coherence meaningful coherence means that a study’s research design, data collection, and analysis are eloquently interconnected to the theoretical framework and situational goals of the study (tracy, ). in an effort to identify factors that might influence the bond between a child with autism and their canine companion, an attachment and family systems analysis was employed in this study. the use of these two theoretical frameworks guided and supported the study, helped determine appropriate research questions, and gave direction to interviews and discussions to focus the research. chapter – results the purpose of this multiple case study was to understand child-canine bonding with a focus on identifying the factors contributing to bonding in children with asd and companion canines. multiple case studies provide an opportunity to examine the phenomenon of child-canine bonding in children with asd by exploring the differences and similarities that occur among each case and identifying how they are situated within their respective family context. recall that there were two research questions guiding the study: ) what features of bowlby’s attachment theory are evident in the child-canine bond? and ) what are the themes characterizing child-canine bonding? this section will first provide an overview of the demographic characteristics of participants including demographics of the families and companion canines, followed by a description of each child’s attachment to his/her companion canine. next, a report on the findings that support the first research question, including prevalence and examples of participants’ responses corresponding to each of bowlby’s four features of attachment, will be addressed. following this, across-case findings addressing the second research question will be presented. . demographics . . family demographics data were collected from participating families. participants included in the analysis totaled parents of children with asd (see table and ). in cases and , both parents were present for the study (mother and father). in the remaining cases only one parent was present. parents ranged in age from - years with a mean of years. out of the eight parents, five were female and three were male. each parent had at least some university or college education. the racial and ethnic background of parents included five caucasian and one aboriginal/caucasian. children with asd ranged in age from - years with a mean of . years (sd = . ). the racial and ethnic background of children included seven caucasian and one african american. two families ( and ) had two children with a confirmed asd level diagnosis. the remaining four families had only one child with a confirmed asd diagnosis. one family ( ) had a child with a level asd diagnosis and all other families had a child with a level asd diagnosis. table family demographics participant(s) birth year gender ethnicity marital status education occupation language f m caucasian/abori ginal married college degree real estate agent english m caucasian married undergraduate degree student english f caucasian married master’s degree doctoral candidate english f caucasian married college degree stay at home english f m caucasian married other: some university flight attendant english f caucasian married undergraduate degree business owner english table demographics of children with and without autism spectrum disorder participant number of children age gender ethnicity diagnosis medication use type of medication na m m caucasian asd- level no na na m m caucasian asd- level yes intuniv pasconal m m caucasian asd- level no na f caucasian asd- no na na na m na na level asd- level f m caucasian asd- level asd- level no na f black asd- level no na . . companion canine demographics five of the six families owned one companion canine and one family owned three companion canines. case owned three companion canines however, they only included their two bull canines in the study as their third companion canine was very elderly and had no particular attachment with their child with asd. in the six families, there were a variety of breeds identified as seen in table . all of the companion canines included in the study were small-medium sized breeds and ranged in age from weeks to years (sd = years). four out of the six companion canines were bought from a breeder. the remaining two companion canines were bought from a local animal shelter. length of time that each family owned the companion canine ranged from weeks to years (sd = . years). table demographics of companion canine(s) participant number of canines bought from breed age(s) in years length of time owned (in years) breeder english bullcanine breeder miniature golden doodle ( ¾ poodle & ¼ golden retriever . spca black lab/border collie spca pomeranian/chihuahua breeder australian labradoodle weeks weeks breeder havanese/bichon months weeks . . child-canine attachment level each participating family completed a self-assessment of child-canine bonding in response to the statement: “how attached is your child with asd to your canine (not very attached; attached; or very attached)?” each participating family was also instructed to answer a question in the demographic survey regarding the age of the child(ren) when the companion canine(s) was brought into the family home (see table ). table child-canine attachment level participant age of child when canine was bought attachment between child with asd and companion canine very attached very attached n/a (prior to birth of children) attached (f) & (m) attached (f) & (m) very attached very attached . support for bowlby’s attachment theory one of the guiding questions in this research study was whether the child-canine bond in children with asd could be conceptualized as an attachment relationship and to what extent these features of attachment are evident. table illustrates the extent to which each component of attachment is evident in each individual case which is then followed by a total score where each category is combined and a composite score is tallied. table features of attachment evident in the child-canine bond proximity seeking safe haven secure base separation anxiety x x x x x x x x x x x x x x x x x x x x x x x x composite score = in the following section, each feature of attachment will be discussed (from the most prevalent to the least prevalent). . . proximity maintenance proximity maintenance is a key component of an attachment relationship and is characterized by a child’s desire to be near to the attachment figure and the attachment figure’s physical proximity and accessibility are enjoyable (ainsworth, ). for this study, proximity maintenance refers to the extent to which a child with asd maintains proximity to the companion canine and was identified as being the most prevalent feature of attachment in the child-canine relationship. . . . evidence from parents in each family (cases - ), the parent(s) shared that their child(ren) with asd enjoyed the accessibility and physical nearness of the companion canine(s). the following statements are illustrations of proximity maintenance as described by parents during the semi-structured interviews. in this particular section of the interview with case , the parents were describing the temperament of their two bull canines and how tolerant these canines were of their son’s (childone) multiple behaviours (e.g., squeezing, pinching, and laying on the canines). as the conversation continued, they both commented on how, for the first six weeks, childone initially did not display any interest in the canines and would actually avoid any physical contact with them. much to there surpise, childone’s parents proceeded to remark that one day, a drastic change in their son's behaviour towards their two bull canines occurred and since then, they have become inseparable. it went from wanting nothing to do with the canines to inseparable. after six weeks it was all of a sudden, it was like a light switch turned on with childone and all of a sudden he follows them around, he pinches them and he wants to be with them all of the time. one day he wanted nothing to do with them and the next day he won’t stop following them around ( ). in case , the mother discussed how her daughter had an immediate bond with the companion canine saying “she bonded right away, the first day we got him she calmed him and fed him. he was in her arms right from the get go and pretty much never left her arms since.” in bowlby’s ( ) description of proximity maintenance, a child’s desire to maintain close proximity to the parental figure is because he or she provides a sense of safety and security. this feature of proximity maintenance was also depicted in the child-canine relationship. sometimes when he needs to talk things through he still wants the canine there…the canine kinda needs to be there for him to have the physical comfort…when he is distressed and doesn’t have anything to discuss he will just go and sit with caninethree…he likes to keep caninethree close to him as much as possible ( ). proximity maintenance is also characterized by seeking out behaviours. in case the parents explain how their two children with asd continually seek out their companion canine: first thing childsix and childseven do when we pick them up from school is seek out caninesix…they just love him! first thing they do when they get in the car from school is say “oh hi caninesix!” first thing in the morning they will look for caninesix. they are very attached. although proximity maintenance was identified as the most salient feature of attachment in the child-canine relationship, in two cases ( and ) the parents did not report that their child(ren) with asd would purposefully seek out or maintain physical nearness to the companion canine. for example, in case , the mother described her son’s relationship with the companion canine as ‘fine” however, there was “nothing to indicate that he has some sort of special bond with caninefour.” in case , the mother explained that although her two children with asd are “always happy to see caninefive, there are no issues with the canine not being there.” observational data collected by the researcher corroborated these findings from case and with no behaviours reflecting proximity maintenance observed. . . . evidence from observation throughout the duration of the interviews, the researcher noted each child’s physical nearness to the companion canine in the observational map (see appendix i). in cases , , and each child maintained close proximity to their companion canine and appeared to make a conscious effort to engage with their companion canine. interactions consisting of ongoing play, cuddling, grooming, and obedience training throughout the interview process with each child’s parent(s). in case , childone engaged with the companion canines often moving back and forth between the canines and other interests (e.g., tech-driven games). these interactions continued and it appeared as though childone would consistently refer to them for physical comfort and reassurance in between other activities. the researcher did not observe behaviours reflecting proximity maintenance in cases or . in each case, the children with asd appeared to be accustomed to their canines presence however, did not seek to actively engage with their canine. . . safe haven safe haven is another essential feature of an attachment relationship and refers to the extent that the children with asd turn to their companion canine for comfort when distressed. following proximity maintenance, safe haven was the second most prevalent feature of attachment evident in the child-canine relationship. in each case it was identified that the companion canine provided comfort to the children with asd during times of emotional upset and distress. . . . evidence from parents when he is feeling stressed he seeks comfort from them. i think when he is feeling stressed or anxious he gets those stemming behaviours and that is when the pinching of canineone and caninetwo come into play ( ). caninethree is very comforting for childtwo when he is upset, i’ve noticed a lot more emotional regulation happens when caninethree is present. he is able to navigate his feelings a little more and express and ask for what he needs ( ). during the interview with case , the child with asd (childeight) was present and free to participate in the discussion. at one point during the conversation childeight proceeded to tell the researcher that “canineseven is very comforting. he cuddles me. when i feel lonely i will go find canineseven.” . . . evidence from observations an important feature of the child-canine bond was close physical contact. this coincides with the attachment features of proximity maintenance and safe haven where close physical contact is enjoyable, purposefully sought out and provides a source of comfort. cuddling, kissing, skin-to-skin contact, extended mutual gazing is characteristic of the infant-caregiver relationship hazaan & ziefman, ). although hazaan & ziefman ( ) clearly state that these behaviours are restricted to the infant-caregiver and romantic relationships, these behaviours have also been exhibited in studies examining the human-canine bond (e.g., beck & madresh, ; kurdek, ; kwong & bartholomew, ). in the current study, the researcher identified that physical contact behaviours characteristic of an attachment relationship also occurs freely in the child-canine bond in children with asd. these behaviours were both observed as well as noted by some of the participating parents. … since you’ve been here, he’s probably looked at you twice, which is obviously the social aspect. but with these canines, he will stare at them for longer than he will actually stare at us…for him, he has a lot of sensory issues so for him to kiss the canines is huge. when i give him a kiss he wipes my kisses off but with the canines he never wipes the kisses off ( ). there is a lot of petting, a lot of hugging, a lot of cuddling, a lot of time! he likes to keep caninethree close to him as much as possible...mainly he plays and cuddles him. especially at bed time, when he goes to bed caninethree will go cuddle up with him in the bed while he falls asleep ( ). . . secure base secure base, the third most prevalent feature of attachment evident in the child-canine relationship, refers to the extent that children with asd perceive their canine as a dependable source of comfort and support. this felt security provided a base for the children with asd to explore the environment and engage in typical interactions that otherwise might be stressful them. . . . evidence from parents secure base was identified in five out of the six cases. in case however, secure base was not identified at the time of the interview perhaps due to the fact that this participating family acquired their companion canine less than four weeks ago. in the remaining cases, it was clearly indicated that the children derived a sense of security from their companion canine. for example, in case , the parents explained the positive impact the canines have had on their son’s willingness to engage in social interactions. “i think with childone, just the sense of familiarity, it makes him feel at ease in social situations. he will be calmer longer if the canines are around.” when the researcher asked participating families how the companion canine has influenced their child’s willingness to engage in otherwise stressful situations, some of the participating families indicated that their child’s(ren’s) relationship with the companion canine has enabled them to engage more fully with the world and feel more confident about their abilities. in the last year we have seen a lot more of an ability to ask and communicate needs rather than get to the point where he can’t anymore…we have noticed more of a willingness to engage in general, there has been a general improvement that is definitely related to caninethree ( ). oh yes, i would say especially in social interactions. when people come to the house it is that topic starter and something that everyone has, that common ground to interact because people will ask questions about the canine so if we are meeting someone new or whatever, caninefive can do that ( ). . . . evidence from observations the most evident depiction of secure base was each child’s willingness to engage with, and eagerness to introduce their canine, to the researcher. for instance, in case , the researcher observed that when she first entered into the participating family’s home, the son with asd opened the door and immediately introduced himself by saying “hi! i am childthree, this is my brother, and this is our canine, caninefour.” childthree evidently identified himself through his family, which included their companion canine. this, in turn, appeared to deconstruct social barriers and increase his willingness to engage. during the interview, childthree’s mother pointed out that: having caninefour around to interact with has opened up childthree’s interactions with other canines and being more comfortable in social settings…by having caninefour, childthree has gotten used to being bumped, being touched, and hearing caninefour bark loudly. the sort of things he would normally find disruptive. . . separation anxiety an individual’s resistance to separation of an attachment figure and their experience of distress when separated are a reflection of separation anxiety. in the current study, separation anxiety was identified as the least prevalent feature of attachment evident in the child-canine relationship. separation anxiety refers to the extent that the children with asd miss their companion canine and become anxious when the companion canine is absent. when the researcher asked participating families how their child copes when separated from the companion canine only one participating family (case ) provided an example of their child with asd expressing behaviours consistent with separation anxiety when a part from their companion canine. from an attachment theory perspective, separation anxiety serves to maintain an infant’s proximity to the caregiver for protection and safety when he/she feels discomfort. when the researcher asked participating families how their child(ren) copes when separated from the companion canine(s), only one participating family (case ) provided an example of their child with asd expressing behaviours consistent with that of separation anxiety when separated from their companion canine. for example, case reported that their son with asd felt distressed when separated from his companion canine which is indicative of an attachment bond. “he does not handle it well, a couple of times we have gone on vacation, just the three of them…and he missed caninethree quite a bit…he definitely gets distressed when he is away from caninethree.” separation anxiety was difficult to assess due to the fact that the children with asd were seldom separated from their companion canine(s). for instance, in cases , and , reports regarding separation anxiety were hypothetical as the children with asd were either never separated from the canine or had separations for only a few hours (e.g., during school days). four out of the six participating families (cases , , , and ) treated the canine as an equally important member of the family and therefore, the canine would be included in day-to-day activities as well as family travel. this is illustrated in the following quotes. it is a strong bond. he would miss those canines if they were not around. the canines are always with us though, there is not a time the canines are not with us and childone, unless he is at school. if we go on vacation they always come with us and we haven’t had a situation where they are not with us yet ( ). they are not really away from him (caninesix) aside from school and i take him with me in the car…they (childsix and childseven) can cope without him but they miss him…but yeah, we haven’t really been away from him. if anything were to ever happen to him though it would be devastating ( )! in case , both the eldest daughter and eldest son were diagnosed with asd however, there was no evidence (during the interview process or throughout the collection of observational data) indicating a typical expression (e.g., upset or distressed when away from the canine) of separation anxiety experienced by the son with asd when absent from the companion canine. however, in the following statement by the mother in case , the researcher noted that perhaps his demonstration of separation anxiety was unique. thinking about their bond with him, children with autism, you may think something is a certain way but it isn’t. there was a time we were thinking of re- homing caninefive just because we thought it was too much to look after. childfive (their son with asd) was so upset and it surprised us! we were like okay, this canine is pretty special to him. although our daughter shows more affection, doesn’t necessarily mean she is more bonded to him. our son has a more severe degree of asd than her too. as was mentioned earlier, separation anxiety, from an attachment theory perspective, focuses on how the dependent (the child) maintains close proximity to the caregiver in order to seek protection and security. comparatively, separation anxiety that focuses on the dependent’s needs is characteristic of a caregiving relationship where the caregiver seeks proximity to the dependent in order to provide protection and security. in case the children experienced a form of separation anxiety suggesting that their caregiving system had taken precedence over the attachment system. for example, even though the children with asd did not display typical separation anxiety behaviours when separated from their companion canine, the parents did report that “they do recognize he is away because they will ask ‘who is with caninefive, who is looking after him? i hope he is okay!’” in this section of the chapter, the findings of this exploratory case study examining whether the child-canine bond in children with asd could be conceptualized as an attachment relationship and to what extent these features of attachment are evident, are presented. given that a strong theoretical framework does exist about this particular phenomenon, directed content analysis was used to analyze this section of the research study (hickey & kipping, ). the analysis revealed that the four features of attachment were evident in the child-canine bond indicating that children with asd have the ability to form an attachment relationship with their companion canine. proximity maintenance and safe haven were identified as being the most prevalent features of attachment while secure base and separation anxiety were the least prevalent features of attachment. . themes characterizing child-canine bonding the second research question addressed in this study was: what personal and external factors influence the child-canine bonding process in children with autism? recall that the prevalent themes within each case were identified using conventional content analysis. following the completion of an individual case analysis for each of the six cases, a cross case analysis was completed. using the identified themes from each individually analyzed case, the cases were then compared to determine if there were similar patterns and themes among them. these themes were then used for within and between case study comparisons in order to identify commonalities and differences. through the completion of the cross-case analysis, the researcher identified major themes characterizing child-canine bonding (see table ). an individual case analysis was completed using the themes to identify the presence or absence of each theme within the individual cases (see table ) which are discussed in the following sections. table prevalent themes, coding descriptions and examples themes description examples canine acquisition considerations made by family members when selecting a canine(s) that increase or decrease the likelihood of a strong child-canine bond age of canine the age of the canine when introduced into the family home puppy versus adult canine pre or post asd diagnosis timing of decision to integrate a canine into the family prior to the child’s/ren’s asd diagnosis or following the child’s/ren’s asd diagnosis intentional versus opportunistic whether decisions and considerations regarding canine selection were carefully made versus flexible, open, and not driven by specific selection criteria (e.g., whether the canine was intentionally acquired or happened upon). specific considerations (e.g., breed, size, temperament, fit into family lifestyle, portability, durability, physical appearance) versus non- specific considerations (e.g., immediate availability at the local animal shelter, not breed bound) bonding strategies strategies that facilitated child- canine bonding pre-canine acquisition strategies that facilitated child- canine bonding child is involved in canine buying process (e.g., following the breeder on social media, involved in selecting the puppy/canine, involved in naming the puppy/canine, preparing the house for the puppy’s/canine’s arrival) post-canine acquisition strategies that facilitated child- canine bonding canine is trained to sleep in child’s bed, child is involved in training the canine/taking the canine to obedience classes, child is involved in canine husbandry (e.g., feeding, walking, grooming, and picking up after the canine), physical contact is encouraged (e.g., petting, cuddling, hugging) ongoing strategies that facilitated child- canine bonding continued obedience training (e.g., ten minutes of obedience training per day at home), physical contact (e.g., petting, cuddling, hugging), playing with the canine, husbandry (e.g., feeding, walking, grooming, picking up after the canine) canine characteristics behavioral and temperamental characteristics of the canine as described by the families desired characteristics contributing to a strong child-canine bond tolerant, reliable, gentle, patient, submissive, social, intuitive (e.g., responds to human emotions), high attachment ability (e.g., breed known for loyalty, ability to connect), affectionate, bombproof (e.g., accepting of multiple and unpredictable behaviors characteristic of a child with asd) undesired characteristics detracting from a strong child-canine bond dominant, possessive, aggressive, insecure (e.g., shy, untrusting/fearful), disengaged (e.g., aloof), selective attachment (e.g., attachment geared toward a specific population such as a male adult) canine as family treatment of canine as part of allowed on furniture, member the family unit permitted to sleep in the child’s bed, travels with the family, incorporation into daily routine, normalization of canine (e.g., the canine is a normal part of the family’s activities) family profile family characteristics contributing to a strong child- canine bond child previous experience child with asd had previous experience with animals accustomed to having other family pets (not limited to canines) and/or being around other family pets (e.g., neighbours and/or friends pets) parental knowledge and experience prior knowledge and experience with canines knowledge regarding breed specific behaviours and breed characteristics, research knowledge on the therapeutic benefits canines can have on children with asd, and previous experience with canines (e.g., growing up with canines) motivation motivation to integrate a canine into the family unit parental and familial desire to integrate a canine into the family home is shared, the canine is intentionally acquired for the child with asd, the child with asd is motivated to get a canine (e.g., persistently asking for a canine, demonstrating responsibility for canine ownership such as saving up money for a canine bed, writing out a list of things he/she will do to take care of the canine, showing attachment behaviors towards other canines) benefits positive influences identified from presence of canine to child positive influences identified from presence of canine developmental changes (e.g., increase in maturity, capability and responsibility), emotional regulation, other regarding (e.g., demonstration of empathy and care towards animals as well as peers), increased social interactions and communication, increased patience and tolerance (e.g. sitting quietly for long periods) to family unit positive influences identified from presence of canine increased togetherness or cohesion of the family, increased social outings and activities, decreased level of stress experienced by the family due to a reduction in emotional outbursts. other miscellaneous themes not fitting in categories above incubation period – a period during which attachment is not immediately evident but is in development. bi-directional effects, children with asd may exhibit multiple and unpredictable behaviours (e.g., stemming, squeezing, pinching, yelling). these behaviours were tolerated by the family canines which evidently had a bi- directional effect where the children tolerated canine behaviours which normally would not be accepted from another human being (e.g., a child with asd would wipe his face after his mother kissed him on the cheek however, he happily accepted kisses from the canines). no competing interests - though interest was evident in interacting with canines, other more attractive activities could usurp this (e.g., tech-driven games). table the absence or presence of prevalent themes within individual cases canine acquisition bonding strategies canine characteristics age of cani ne pre or post asd diagnosis intentional versus opportunistic pre canin e post cani ne ongoing desired undesired puppy post intentional x x x puppy post intentional x x x x adult pre opportunistic x x adult post opportunistic x x x puppy post intentional x x x x x puppy post intentional x x x x canine as family member family profile benefits of canine other child prior experience parental knowledge & experience motivation to child to family x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x . . canine acquisition canine acquisition was a prevalent theme that emerged during the cross-case analysis and is described by the researcher as decisions that the families made when selecting a canine(s) that increased or decreased the likelihood of a strong child-canine bond. throughout the researcher’s semi-structured interviews with the parents and collection of observational data, three sub- themes related to canine acquisition were identified and included: ) the age of the canine (puppy versus adult); ) the timing of acquisition (pre or post asd diagnosis) to integrate a canine into the family home; and ) whether the decision to integrate a canine into the family home was intentional or opportunistic. in the following sections, support for each of these subthemes will be provided including participant comments and corroborating researcher observations. . . . age of canine a prominent sub-theme that was noted by the researcher was the age at which the canine was introduced into the family home. an attachment relationship was more evident in the families who integrated the companion canine(s) into the family home when the canines were puppies, following their child’s(ren’s) asd diagnosis ( / cases supported this). during the cross-case analysis, this subtheme became especially apparent to the researcher when differences in cases and emerged. in comparison to cases , , , and , where a stronger child-canine bond was evident, a lack of bond was evident in cases and . this prompted the researcher to investigate potential explanations for this finding. notably, in cases , , , and , the companion canines were acquired as puppies whereas in cases and , the companion canines were either an adult by the time the child with asd was born (case ) or was acquired at an adult age (case ). . . . evidence from parents in case , the companion canine was acquired prior to the birth of their son with asd and was an adult ( years of age) at the time of their son’s birth. although the bond between the child with asd and the companion canine was reported as “attached” the mother stated that there was “nothing that indicated childthree has some sort of special bond with caninefour.” a weaker bond was also exhibited in case . in this particular family, the companion canine was adopted from the society for the prevention of cruelty to animals (spca) and integrated in to the family home at the age of two years. “he was not a young pup when we got him, he is ten years old but we got him eight years ago, so we got him when he was two years old.” the mother did report that her two children with asd were “attached” to caninefive however, given his current age and personality, she pointed out the following: i think it is a little tough for them to bond more with caninefive…he is not overly playful…he is not the kind of canine you take the park and throw a frisbee…if he was more playful and would run the ball to them i think they would be all over that. it is limited to a certain degree because of his nature and age. . . . evidence from observations throughout the interview process with cases and , the researcher observed minimal interactions between the children with asd and the companion canines. rather than directly engaging with the canines, the children seemed distracted by other interests. in both cases, the children appeared to be accustomed to the canine’s presence however, their actual engagement was minimal. . . . pre or post asd diagnosis the timing when the companion canine was acquired into the family home was another prominent subtheme that correlated with the strength of the child-canine bond. it became evident that the children whose families had decided to integrate a canine into their home following their asd diagnosis (post-asd diagnosis) exhibited a stronger bond to their companion canine compared to those who integrated a canine into their home prior to their asd diagnosis (pre-asd diagnosis). this was illustrated in cases and where an attachment relationship between the children with asd and their companion canines were found to be least prevalent. as previously mentioned, case acquired their companion canine prior to the birth of their son with asd and therefore prior to his asd diagnosis. additionally, in case , their companion canine was acquired prior to their daughter’s asd diagnosis. . . . intentional versus opportunistic canine acquisition decisions and considerations regarding canine selection were evident in participants’ responses to the researcher’s questions during the semi-structured interviews (e.g., looking back to when you first brought (name of canine) home, could you tell me what drew you to getting (name of canine) versus any of the other canines you perhaps looked at? what or who influenced you to get a companion canine?). two distinct pathways regarding the acquisition of companion canines emerged. several of the families (cases , , & ) acquired canines through what may be considered intentional efforts (e.g., specific considerations, such as breed, size, and temperament, were carefully made). alternatively, the remaining two families (cases and ) reported being more opportunistic regarding canine acquisition and selection (e.g., flexible, open and not driven by specific selection criteria). a trend between the strength of the child-canine bond and the acquisition strategies used by the participating families’ (intentional versus opportunistic) emerged. a stronger child-canine bond was evident in the families who made intentional and careful decisions regarding canine selection. intentional decision criteria included breed, size, temperament and physical appearance of the canine, and fit into family lifestyle and portability of the canine. in the following section, illustrations of intentional decisions regarding canine selection gathered from the interview data are presented. we needed a canine that was great with kids. bull canines are in the top ten canines that are best with kids. we had a really big big canine, a leonberger, he was great with kids but so big and joe did not interact with him, really at all. he was just too big…we wanted a canine that was great with kids, a sturdy canine. we have two boys and they wrestle. so temperament was important and yeah just good with kids. temperament, personality and sturdiness…the bullcanine, no matter what you do, doesn’t get angry or aggressive. you can do anything to them ( ). we decided on the golden doodle for the mixture of retriever temperament and poodle intelligence. we were looking for a breed that was known for unconditional attachment and ease of attachment and no aggression…we went with ¼ golden retriever and ¾ poodle…a friend of ours has a full sized golden doodle and that is a big big canine, we were always concerned about the boys walking him so a bigger canine would have a been a concern for us. caninethree is a good size. ‘he can sit on our lap when we call him!’ yes, as childtwo says, he is like a lap canine ( ). we looked around at a lot of canines and i think that we really liked the red color, and size wise, we did not want anything too big or too dominating…we wanted something that was medium sized, so he will be lbs which will be a nice size. he is a lab and poodle so they brought down the size ( ). five out of the six participating families stressed the importance of size, portability, and fit with family lifestyle. large breeds appeared to present an obstacle from the child-canine bonding process with concerns of being overwhelming for the child with asd as well as the overall family unit. the last canine was too big, so the kids could not play with the canine. so that was the drive with this breed, something small, stalky, solid. something that we could take with us camping, because we camp and we boat. childone loves walking canineone on the leash, so a larger canine, you know, i wouldn’t want a kid dragging down the street ( ). we didn’t want a bigger canine. we didn’t want to change our lifestyle…we wanted something that could still travel with us…we thought a smaller canine that could come with us is a little easier than a big canine. we didn’t want a canine we would always have to walk and take outside ( ). comparatively, case reported that they were not driven by specific breed characteristics and were more elusive regarding the type of temperament they were seeking when they decided to integrate a companion canine into the family home. we were primarily interested in getting a canine from the spca, rather than being focused on breed per say we were being opportunistic keeping an eye on what was coming up…we were interest in a larger canine but not necessarily really large and there were some breeds that we were not very interested in due to reputation but we were fairly open to a mix of things ( ). additionally, case appeared to be more focused on canine availability rather than selecting a canine that would be suitable for a child with asd. when we went to the spca, we were having trouble finding one that was out in display so the spca worker went to the back and brought caninefive in his arms. we were then like "oh he is so cute!" it was not the breed in particular he just looked like this ball of snow. . . bonding strategies in addition to canine acquisition, bonding strategies were also found to be a factor influencing the development of an attachment relationship between children with asd and their companion canine. bonding strategies emerged as the second theme identified across cases and are defined as strategies that appeared to facilitate child-canine bonding. discussions with the participating families included noteworthy dialogue around bonding strategies that were implemented to facilitate a strong child-canine bond. five out of the six participating families indicated that they intentionally implemented strategies to help facilitate a bond however, the researcher also identified and categorized strategies that may have been unintentional yet appeared to contribute to the child-canine bonding process. strategies were categorized into three distinct phases and included strategies that occurred: ) prior to integrating the companion canine(s) into the family home (pre-canine acquisition); ) immediately following acquisition of the companion canine(s) (post canine acquisition); and ) continuing after a bond between the child with asd and the companion canine had been established (ongoing). . . . pre-canine acquisition the cross-case analysis revealed that by involving the child with asd in the canine- acquisition process helped encourage the development of an attachment relationship. children with asd often exhibit restricted, repetitive patterns of behaviour, interests, or activities that can be manifested as excessive adherence to routines or excessive resistance to change. adding a companion canine into the family home will inevitably result in changes to daily routines and require an adjustment to the family system. for children with asd, preparation for change is essential in order to facilitate smooth transitions and minimize disruptions. for the majority of cases, involving the participating children with asd in the canine-acquisition process helped prepare them for these changes and increased their excitement about the addition of a companion canine. in this study, child involvement included strategies such as frequent communication with the breeder, following the breeder on social media (e.g., the breeder’s facebook page where pictures of the puppies would be posted), and having the child with asd help select the canine. when it came to choosing the puppies we followed the breeder on facebook and she would post pictures of them once a week…as the puppies got older i would ask the kids ‘okay, which one catches your eye?’…it is so good for the kids though because every morning they would go to the breeder’s website and every day she would post new pictures or videos so they really followed the process. we knew we were getting him before the mom was even bred yet. so we followed them since april ( ). we wanted the havanese breed, we wanted a fluffy canine …we were told to get a blend and we found the havanese-bichon …so we all looked on the internet and found him on kijiji…we got him from a breeder and we all went to get him. all of us ( )! other forms of involvement included having the child(ren) with asd name the puppy/canine and help prepare the house for the canine’s arrival. linda (childtwo’s mom) channelled his excitement and made him take some ownership, he had to save up money to help pay for a canine bed and he had to promise and he wrote out some things he would do with the canine and he’s lived up to it. he did lobby for the canine and some responsibility attached to it ( ). . . . post-canine acquisition the most common child-canine bonding strategies were strategies implemented following the acquisition of the companion canine. post-canine acquisition strategies were strategies that the parents’ intentionally put into action to help encourage child-canine bonding. participants reported that close physical contact such as having the companion canine sleep in the child’s(ren’s) bed, was frequently encouraged. we also set up, immediately after caninethree was house trained he started sleeping with childtwo and stays for a while and then leaves…that is something we worked with caninethree to do. it was trained, we trained caninethree to do it ( ). honestly, i would pick the bullcanines up and drop them on childone’s lap and childone would squish them…there was no easing into it. we used to have the canines go into his room and the canines would go in there and cuddle him as well. it is all about cuddling and connection. when he sees them laying he will go curl up in there stomach, it is so sweet ( ). post-canine acquisition strategies also included involving the child in the care of the canine (e.g., feeding, walking, grooming, and picking up after the canine) and taking the canine to obedience classes. i think that is where encouraging him to help feed caninefour because he has expressed interest in it and encourage him to hold the bowl and have caninefour to sit. to always be encouraging his independence to complete tasks and feel good about it ( ). with me, when walking i would have childone hold the leash and he really, he thought it was really cool, and of course me trying to read his mind being nonverbal, but you could just tell he thought it was really cool because he would look at the leash and then look down the line and see that he was holding canineone. so i think he thought it was really cool ( ). also, childtwo walks caninethree…and then, caninethree has been through two rounds of obedience training, and childtwo and linda (childtwo’s mom) did that together and we asked that childtwo be able to attend because they only wanted one owner and one animal, so they made the exception. we thought this would give him the opportunity to bond and work with caninethree in the obedience setting ( ). . . . ongoing ongoing strategies included strategies that continued well after the companion canine was integrated into the family home and had become a part of the child’s day-to-day routine. ongoing strategies included: continued obedience training (e.g., ten minutes of obedience per day at home); physical contact (e.g., petting, cuddling, hugging); playing with the companion canine; and continued care of the companion canine (e.g., daily feeding, walking, grooming and picking up after the canine). normally in the morning they will play with him, take him outside…walk him to the tennis courts and to school and back. because he is still a puppy the kids will follow him around to make sure he doesn’t get in trouble. for the most part, it is just following him around, and they will obedience train him and teach him new tricks…they will play with him, feed him, and give him fresh water. “whenever it is possible we play with him. whenever he is not sleeping ( )!” childtwo walks him five days a week and i encourage it on the weekends. if the boys go outside to play caninethree will go out and they will play the ball for him …a lot of playing. childtwo helps with poop pick up in the backyard and walking and the playing and a bit of the training. . . canine characteristics canine characteristics emerged as the third theme in the cross-case analysis. canine characteristics included age, size, and behavioural/tempermental traits. the families with older canines appeared to be less tolerant of physical touch from children and therefore less inclined to interact with them. comparatively, the families with younger canines who were integrated into the home as a puppy appeared to happily engage with the child(ren), were more energetic and playful, and more tolerant of multiple and unpredictable behaviours often exhibited by children with asd. the families who had older canines in their home (i.e., cases , , & ) exhibited avoidant behaviour and were less likely to engage with the children perhaps affecting the ability to establish an attachment relationship. size of the canine also emerged as a prevalent theme across cases. the importance of size was reported by each family. large breeds appeared to present an obstacle from the child- canine bonding process with concerns of being overwhelming for the child with asd as well as the family unit. this was exemplified in case where they discussed the relationship between their son and the first companion canine they acquired prior to deciding upon a smaller breed. “we had a really big big canine…he was great with kids but so big and childone did not interact with him, really at all. he was just too big. he (the canine) now lives with my parents (case ).” small-medium sized breeds were the preferred size chosen by the families with reported fears that a larger breed might be overpowering (e.g., pulling the child while walking or knocking the child over). behavioural/temperamental traits of the companion canine as described by the participating families and observed by the researcher, also appeared to impact the strength of the child-canine bond. throughout the researcher’s semi-structured interviews with the parents and collection of observational data, two subthemes related to canine characteristics were identified: ) desirable; and ) undesirable. desirable characteristics are operationalized as qualities of the canine that contributed to a strong child-canine bond. whereas undesirable characteristics are operationalized as qualities of the canine that detracted from a strong child-canine bond. . . . desired behavioural/temperamental variations existed between the companion canines participating in this study. despite these variations, the most frequently discussed behavioural/temperamental characteristic of the companion canines was tolerance (i.e., a canine’s willingness to endure specified conditions or treatments). the bullcanine, no matter what you do, doesn’t get angry or aggressive. you can do anything to them…childone will grab their wrinkles and squeeze them…he will squeeze when he’s excited and sometimes he needs that input and he will grab underneath their jowls…his behaviour interventionists are amazed by what these canines will let him do. he will lay right on top of them. he sits on them and lays on them and they will not run away, they will just lay there and take it ( ). you can do anything to him. he is very tolerant and the kids have always played with him like this. they can do anything…he puts up with a lot ( ). submissive canine behaviours were also described as being desirable for a child with asd. a canine that readily surrenders authority, seeks human leadership, is highly trainable and reliable and has no desire to dominate is often characterized as being submissive. he is happy to go along with things but generally not the leader. not the one to charge out there. always has an eye out to check what is going on and what he should be doing. he is very gentle. he is more submissive and is looking for what the right moves are and wants to follow along and stay close…he was really really good with them as little babies crawling on the floor. there were never any feelings of there being some sort of issue. he is a fantastic family canine ( )! a common canine behaviour that was both sought after and described as being desirable was a canines’ ability to tolerate multiple and unpredictable behaviours characteristic of a child with asd (e.g, stemming behaviours, pinching, squeezing, jumping and shouting). this behaviour can also be referred to as being “bombproof” meaning nothing within the bounds of reason, will startle the canine. we decided on the golden doodle…we were looking for a breed that was known for unconditional attachment and ease of attachment and no aggressions, very tolerant of multiple behaviours ( ). children on the spectrum can be, like childone jumps, and canines can be scared because they are unpredictable and childone can be unpredictable and these canines are so patient. their calm demeanor, their size and structure, their personality, i truly don’t believe there is a better canine for an autistic child ( ). . . . undesired several participating families reported characteristics exhibited by their companion canine that were undesirable and potentially detract from a strong child-canine bond. the most salient undesired behavaioural/temperamental characteristics were dominance possessiveness and/or aggression. he can be so sweet and cuddly but then he wants to dominate, definitely…at first he was so quiet and then all of a sudden, yeah like if you wake him up from his nap or something he might growl and if he goes out with other puppies he really wants to be the dominant one…it does worry me a bit, but he is still a puppy…but yeah that worries me a little bit because with our friends canine, the kids would lie all over her and they would just dress her up and she was so easy going…he definitely has aggressive tendencies ( ). insecurity (e.g., shy, untrusting/fearful), disengagement (e.g., aloof), and attachment issues (e.g., attachment geared towards adults versus children) were also reported as undesirable canine characteristics. he is very insecure because he is a rescue, so you can see signs of that insecurity in him…he is not overly playful…he is more geared towards adults, he is not as kid oriented. if he was more playful and would run the ball to them i think they would be all over that. it is limited to a certain degree just because of his nature. he likes adults more than children… he has a very dysfunctional attachment to my husband. i think that has affected his bond with the kids, in a negative way. he has an insecurity without that approval from a male adult, you can never fill that need in him. he wasn't socialized properly with other canines or people so we can't take him to canine parks because he will just start barking at the other canines ( ). . . canine as family member one of the most remarkable findings that appeared to have a strong influence on the child-canine bonding process was the placement of the canine within the family system. for example, consideration and treatment of the companion canine as part of the family unit evidently had a significant impact on the child-canine bond. treatment of the companion canine as a family member was most evident in cases , , , and . . . . evidence from parents in case , the parents reported that the development of an attachment relationship between their son with asd and the companion canines occurred suddenly and described it as a “light-switch moment.” the family reported that by treating the canines as members of the family may have contributed to the change in their son’s behaviour toward the companion canines. after six weeks it was all of a sudden, like a light switch turned on with childone and all of a sudden he follows them around he pinches them and he wants to be with them all of the time. one day he wanted nothing to do with them and the next day he won’t stop following them around…we would always encourage him to spend time with the canines and they were always up on the couch, they were the first canines we had that we allowed to come up on the couch and cuddle and maybe he saw that ( ). case explained how important it is that their companion canine be included in all family activities: “he comes everywhere with us, he will come in the car. if we go travelling he will come with us. he will go with us everywhere.” other participating families also indicated that their companion canine(s) would be included in day-to-day activities. the canines are always with us, there is no time the canines are not with us and childone, unless he is at school. if we go on vacation they always come with us and we haven’t had a situation where they are not with us yet ( ). they are not really away from him aside from school. and i take him in the car…yeah, it is a little tough to answer because we haven’t really been away from him. if anything were to ever happen to him though it would be devastating ( )! to illustrate a comparison for the reader, case reported that at one point they considered giving their companion canine away. “there was a time we were thinking of re-homing caninefive just because we thought it was too much to look after.” the concept that the canine was replaceable became evident and perhaps contributed to the lack of bond observed between the children with asd and their companion canine. these cross case comparisons highlight the notion that how the canine is situated within the family system can impact the child-canine bonding process. . . . evidence from observations these findings were also corroborated by the researcher’s observations. the researcher identified that families who treated and described their companion canine(s) as an equal member of the family also reported a strong child-canine bond. treatment of the companion canine as part of the family unit was characterized by families who allow their companion canine(s) on the furniture, travel with their companion canine(s), and permit the companion canine(s) to sleep in their child’s bed. . . family profile family profile was the fifth prevalent theme to emerge during the cross-case analysis and is described by the researcher as characteristics of the family and characteristics of the child with asd that contribute to child-canine bonding. throughout the researcher’s semi-structured interviews with the parents and observations, three subthemes related to family profile were identified and included: ) child’s previous experience; ) parental knowledge and experience; and ) motivation. . . . child previous experience a prominent subtheme noted by the researcher is whether or not the child with asd had previous experience with animals prior to integrating companion canine into the family home. previous experience with animals was not limited to canines and did not require extensive involvement with animals however it was identified that the participating children with asd who were accustomed to having other family pets (i.e., the normalization of family pets) and/or being around other pets (e.g., neighbors and/or friends pets) formed a strong bond with their companion canine(s). . . . parental knowledge and experience parental prior knowledge and experience with canines is the second subtheme falling under family profile. parental knowledge included knowledge regarding breed specific behaviours and breed characteristics, research on the therapeutic benefits canines can have on children with asd, and previous experience with canines (e.g., growing up with canines). four of the participating families (i.e., , , , ) reported having specific knowledge regarding various canine breeds and were selective about choosing a canine that matched their family’s lifestyle and child’s needs. with two young boys, we needed a canine that was great with kids. bull canines are in the top ten canines that are best with kids. the last canine was too big, so the kids could not play with the canine. so that was the drive with this breed, something small, stalky, and solid… i love big canines, so the drive for me to get these canines was for childone ( ). so he is an australian labradoodle, and the reason we chose him was because our friends had a golden doodle and the kids were just so attached to her…we always knew if we got a canine that is the type of breed we wanted because it is a known breed to be good with kids and it is a family canine and with our kids we weren’t going to do spca because you just didn’t know what you were going to get and so far us we just wanted a little bit more of a sure thing and was more known to have a good reputation for being good with families so we didn’t want to take any chances ( ). to illustrate a comparison for the reader, cases and appeared to have little knowledge regarding breed specific behaviours and breed specific characteristics. this lack of knowledge appeared to contribute their decisions concerning canine selection which may have detracted from the child-canine bond. for example, in case , although size was an important determinant when the family was selecting a companion canine, they reported being very opportunistic and open-minded regarding breed, temperament, and history (e.g., the background of a rescue canine). we wanted something in between a small and medium size…when we went to the spca we were having trouble finding one that was out in display so the spca worker went to the back and brought caninefive in his arms. we were then like "oh he is so cute!" it was not the breed in particular he just looked like this ball of snow ( ) knowledge of the therapeutic benefits canines can have on children with asd and previous experience with canines (e.g., growing up with canines) also appeared to contribute to the formation of a strong child-canine bond. there was definitely research…i think it started with just the therapeutic benefits of owning a canine in general and then kind of went into the asd connection and aat as an avenue ( ). positive previous experience with canines was a common subtheme among the participating families. families with positive previous experiences expressed a consistent understanding that a companion canine could provide therapeutic benefits for children with asd. we owned all kinds of canines and i owned canines over my life and all kinds of breed…we have always had canines around here. both of us growing up…we really wanted our children to have the same experience that we did when we were kids ( ). . . . motivation motivation was the third subtheme to emerge under family profile. it became apparent that participating families identified motivational factors as influential in their decision to integrate a companion canine into the family home. motivational factors included whether or not the desire to integrate a canine into the family home was equally shared by all members of the family, whether or not the canine was intentionally acquired for the child with asd, and whether or not the child with asd was motivated to get a canine (e.g., persistently asking for a canine, demonstrating responsibility for canine ownership such as saving up money for a canine bed, writing out a list of things he/she will do to take care of the canine). the cross-case analysis revealed that there was a stronger child-canine bond in the participating families who collectively agreed upon integrating a companion canine into the family home and shared mutual excitement regarding this decision. in five out of the six participating families, parental and familial desire to integrate a companion canine into the family was shared. comparatively, in case , motivation to integrate a companion canine into the family home was not shared by all family members which may have detracted from the child- canine bonding process: it was more my husband who wanted a canine than i did…my husband’s sense of enjoying the companionship is more than mine, not that i don't like having a canine, but i don't necessarily feel like i need to fill up the house with another thing to take care of and i am sure that comes with having the kids. i think the bonding thing is what drew him to having a canine, i am more of a cat person. the canine was more his idea than mine, but i certainly like canines ( ). the data also revealed that a strong child-canine bond was evident in families who intentionally acquired a companion canine for their child with asd. a majority of the participating families indicated that their child’s(ren’s) keen interest and motivation to integrate a companion canine into the family home was an influential deciding factor. we knew that eventually we would want a canine in our family and that a canine would be a positive addition to our family and so i think that it was mostly the kids but mostly something that we wanted as a family anyways. but the key motivation would definitely be the kids. mostly our daughter but our son has actually been so helpful and involved… i think that just the unconditional love. we watched something on it about kids with more severe asd and canines and how they would do really well with canines ( ). through the analysis of the semi-structured interviews with the participating families it became evident that a strong child-canine bond occurred when the child with asd was motivated to get a companion canine. for example, one participating family ( ) reported that their son with asd was highly motivated to integrate a companion canine into the family home which helped facilitate a strong bond. he was just so interested in having the canine so that facilitated his interest in bonding…he was persistent and my wife channeled that and made him take some ownership, he had to save up some money to help pay for a canine bed and he had to promise and he wrote out some things he would do with the canine and he's lived up to it. he did lobby for the canine and some responsibility attached to it ( ). case also contested that their children’s keen interest facilitated a strong bond. they bonded right away. they both wanted to be around him all of the time! it was not necessary to try to facilitate a bond. if anything it was the opposite, they need to let him be sometimes and i tell them he needs to sleep, let him sleep! . . benefits the sixth theme to emerge from the cross-case analysis was benefits. familial benefits elicited by companion canines for families impacted by asd was not initially intended to be a focal point in this study. however, throughout interviews with the participants the positive effects that the companion canine(s) have had on the families often became a focus of discussion throughout the interview process and therefore must be acknowledged. two overarching benefits of companion canine acquisition for families impacted by autism were identified. these included: ) benefits for the children with asd (e.g., increased maturity, responsibility, and capability, increased social interactions communication skills development, emotional regulation); and ) familial benefits (e.g., reduction in parental stress, increased togetherness or cohesion of the family unit, increased social outing). . . . benefits to child parents reported that their children with asd were benefiting through companionship, unconditional love and stress relief. i think just that unconditional love… it would be good for the kids’ self-esteem and what not, they have trouble at school, they don’t have a lot of friends and we thought with canines, no matter what happens they will love them. he will want to kiss them when they get home from school and even if we are mad at them or the school is mad at them. that was something we thought it would be good for them. that consistency ( ). in case , childeight’s mother explained how their companion canine provided an opportunity for her daughter to develop an attachment relationship. canines will always come back for you. that unconditional love, kids need to feel that…to have an animal you know, kids just need to feel that…i remember our behaviour interventionist came over and they told me i had to teach her attachment and i was just blown away! having an animal can facilitate that learning. canineseven has taught childeight about attachment…( )” other prominent benefits included developmental changes (e.g., increase in maturity, responsibility, and capability), emotional regulation, other regarding (e.g., demonstration of empathy and care towards animals as well as peers) increased social interactions and communication and increased patience and tolerance (e.g. sitting quietly for long periods). participating parents reported that their children with asd were fascinated with their companion canines and showed them more affection and positive social behaviour than they showed people. the quality of the relationship with the companion canine was, according to a majority of the participating parents’ descriptions, often strong, unique, and deep. one mother said: the way he looks at these canines, he studies them and he actually puts their ears on his lips and looks at them. i truly believe that he studies them. it is a connection that i can’t explain. he wouldn’t give a person that much attention. he has a connection with these canines that he has with nobody outside of his immediate family. since you’ve been here, he’s probably looked at you twice…but with these canines, he will stare at them for longer than he will actually stare at us. a majority of the parents reported that interactions with the companion canines facilitated considerable growth in the areas of emotion recognition, perspective taking, and empathy. one mother said: it brought childeight out and her ability to think of others is the biggest thing we have noticed. she will think to care for canineseven and that transfers to others. she will think to feed canineseven and that is something we have never seen before. she has much more empathy and showing care because she is feeling that love with canineseven you know, i love something and it loves me back ( ). childeight’s mother further stated that the relationship between her daughter and the companion canine has increased her ability to think of others (other regarding) which has transferred to her relationships with other peers. it is growing that empathy part. instead of you know laughing at someone who gets hurt she has much more empathy. for example, her friend cut her finger at school the other week and she took her to the teacher and stood by her side the entire time to make sure she is okay, and that would not typically happen. it was not there two years ago, before canineseven ( ). participating parents additionally reported that the interactions with the companion canines facilitated more responsibility-based relationships, such as grooming and caring for the animals’ needs, and encouraged the children to engage in activities such as walking the canine and taking the canine to obedience classes. responsibility-based relationships were evident across each case. in case , childeight’s mother offered, “she is more active now that we have canineseven, just having that responsibility…she will think to feed canineseven and that is something we have never seen before.” childsix and childseven’s parents (case ) pointed out that they are both very involved in the care of caninesix, “…they will take him out to go to the bathroom, they will take him for short walks, and they will feed him…they have demonstrated more responsibility.” childtwo’s father pointed out that since getting caninethree, they have seen tremendous developmental changes. it has been very good for childtwo’s development…over the last six months we have seen a huge change in maturity and capability and responsibility…there has been some really good quality changes in relation to, i think part of it is looking after a canine… yes, definitely so many increases in responsibility ( ). responsibility-based relationships also require the ability of the individual to take perspective and recognize the needs of others based on contextual information as well as their expressions, words and/or actions (cognitive empathy) (smith, ; ). childtwo’s father narrated that his son demonstrates a level of care for his companion canine that has never been seen before they integrated their canine into their home. the following quotation is from a story that childtwo’s father shared to illustrate how a responsibility-based relationship is evident between his son with asd and the companion canine. at this time in the interview childtwo’s father was telling the researcher a story of when they took their canine on a hiking trip up in the mountains following a snowstorm. after our hike, i left to take our other son to school and when i got home childtwo took caninethree and put him in the bath to take the snow off of caninethree and it was just such a fantastic demonstration of care…that was a level of care for caninethree that childtwo would not demonstrate for himself or other humans. parents have also reported increased social skills development in their child(ren) with asd due to the presence of the companion canine(s). in case the mother stated: …one of the first things he says when he meets people is “hi, i am childthree, and we have a canine named caninefour!” even if caninefour is not with us, it is front and centre in terms of how he defines himself and his family and what is most real to him…having caninefour around to interact with has opened up childthree’s interactions with other canines and being more comfortable in social settings ( ). childfour and childfive’s mother stated that their canine has increased her children’s willingness to engage with people outside of their immediate family. when people come to the house, it is that topic starter and something that everyone has that common ground to interact because people will ask questions about the canine so if we are meeting someone new or whatever, caninefive can do that ( ). in case , childone’s mother described how her son is proud of the canines which puts him at ease during social interactions. he is very proud of the canines, if we are with the canines and they draw some attention he is very proud of the canines. i think with childone, just the sense of familiarity it makes him feel at ease in social situations. he will be calmer for longer if the canines are around ( ). . . . benefits to the family unit a child with asd presents pervasive and bidirectional influences on the entire family system. that is, not only do behaviours persist overtime but these behaviour’s impact both the child and the family’s functioning. living with a child with asd presents different challenges for everyone, however there were commonalities that most participating families expressed. throughout the conversations, parents reported challenges and stresses associated with having a child with asd. parents described household chaos, family dysfunction, and feelings of unease because they never knew when an emotional breakdown was going to happen. the present study presents emerging evidence that companion canines can positively impact families affected by autism. benefits included increased togetherness or cohesion of the family unit, increased social outings and activities, and decreased levels of stress experienced by the family unit due to a reduction in emotional outbursts which are characteristic of children with asd. in case , the mother described how their companion canines have inadvertently increased togetherness and cohesion of the family unit by increasing their child’s tolerance for typical family experiences (e.g., sitting on the couch watching a movie, going on family vacations). if we are all cuddling on the couch watching a movie it would be unusual if they were not there. because he will sit there for hours with us if they are there…this is a perfect example, instead of childone sitting with us for ten minutes, he will sit with us for two hours if the canines are there ( ). we went to tofino last year and childone would normally be very upset going long distances but with the canines next to him that seemed to calm him…he would not normally last as long in a travel situation if the canines were not there ( ). in case , the mother commented on how their companion canine has provided an opportunity to engage in family outdoor activities. % of the exercise caninethree gets is me taking him out with the boys. when they were little i would push them in the stroller and we would take him to the canine park. now that they are getting older we will take them up to the hills and go around the hiking trails and stuff ( ). several parents reported a reduction in stress due to a decrease in their child’s emotional outbursts. one family in particular described how the companion canine has increased their son’s ability to recognize emotions and discern how the canine is feeling based on nonverbal information, such as gestures, body position, and expressions (e.g., tail in between the leg, ears pinned back, cowering under the table). this in turn, has increased their son’s ability to regulate his emotions. childtwo used to get very angry and that would scare the hell out of caninethree. so, he actually works to keep himself calm by reading caninethree’s response. it hasn't happened in so long i have forgotten but yeah there used to be a lot of yelling before caninethree. when there was anger caninethree would withdraw away from that ( ). for families impacted by autism, emotional outbursts in children with asd may occur frequently. for this family in particular, they felt relief and were able to relax again as the fears about their child having a “melt-down” were eased. . . other also noteworthy was the identification of miscellaneous themes not fitting in categories above. although they were not prevalent across all cases, they were stressed within individual cases and merit recognition. miscellaneous themes included incubation period, bi-directional effects, and no competing interests. incubation period refers to a period of time during which attachment is not immediately evident but is in development. this was demonstrated in case where the parents pointed out that their son’s attachment to the companion canines did not occur immediately after integrating the canines into the family home. the parents referred to the sudden occurrence of an attachment bond as though a “light-switch turned on” after six weeks. childone did not interact with them for the first six weeks, he would recoil and pull his hands away and he wanted nothing to do with the canines. i still remember the day, my husband pointed out, he was in the bed and caninetwo was in the bed with him lying. it went from wanting nothing to with the canines to inseparable. after six weeks it was all of a sudden, like a light switch turned on with childone and all of a sudden he follows them around he pinched them and he wants to be with them all of the time. one day he wanted nothing to do with them and the next day he won’t stop following them around. other families reported that a bond formed immediately without the need to implement any bonding strategies. one mother said, “they bonded right away! they both wanted to be around him all of the time! it was not necessary to try to facilitate a bond ( ).” it is evident that the formation of an attachment relationship between a child with asd and their companion canine does exist however, can vary. autism is a complex neurobehavioural disorder and therefore might affect the child’s ability to immediately form an attachment bond. children with asd may exhibit multiple and unpredictable behaviours (e.g., stemming, squeezing, pinching, yelling). these behaviours were tolerated by the companion canines which evidently had a bi-directional effect. for example, the children appeared to be more tolerant of behaviours exhibited by their companion canine(s) (e.g., licking, jumping, barking) which normally would not be accepted from another human being (e.g., kissing, physical contact, making loud noises). this was illustrated in case where the son would wipe his face after his mother kissed him but would happily accept kisses from the canines. “for him, he has a lot of sensory issues so for him to kiss the canines is huge. when i give him a kiss he wipes my kissed off but with the canines he never wipes the kiss off.” lastly, the cross-case analysis revealed that competing interests could potentially hinder the formation of a strong child-canine bond. children with asd often exhibit highly restricted, fixated interests that are heightened in intensity or focus; such as a strong attachment to or preoccupation with unusual objects, or excessively circumscribed or perseverative interests. though interest was evident in interacting with companion canines, other more attractive activities could usurp this (e.g., tech-driven games). for example, in case the mother mentioned that her son with asd has a fixated interest with electronics and said: “if he walks past them and sees them and he’s got no electronics in his life, he will get up and go squeeze them and pinch them…( ).” childthree’s mother also indicated her son’s fixation for inanimate objects and mentioned that if they are available, her son prefers to play with flashlights and tech gadgets over interacting with the companion canine. in reference to her son’s interactions with the companion canine she said, “i would say it’s sporadic, he is much more pre-occupied in his own things than engaging caninefour ( ).” . summary in this chapter, the findings of this qualitative case study were presented. using bowlby’s attachment theory as a theoretical framework, it became evident that the child-canine bond in children with asd can be conceptualized as an attachment relationship. proximity maintenance and safe haven were identified as being the most prevalent features of attachment while secure base and separation anxiety were identified as being the least prevalent features of attachment. additionally, the seven major themes characterizing child-canine bonding were presented and included: ) canine acquisition; ) bonding strategies; ) canine characteristics; ) canine as family member; ) family profile; ) benefits; and ) other. each of the major themes and subsequent subthemes were described and discussed as factors that either contribute to or detract from the child-canine bonding process. chapter – discussion of findings, implications and conclusion . overview this is one of the first studies to examine child-canine bonding in children with asd. the findings highlight useful information regarding features of attachment characterizing the child-canine bond, factors influencing this bonding process, and the positive impact of the child- canine bond for children with asd as well as the family unit. in this chapter, the most salient aspects of the findings will be discussed. this discussion will focus on the nature of the child-canine relationship and the factors influencing the bonding process and how families impacted by autism can help ensure a strong child-canine bond. as well, the perceived benefits of a companion canine for families impacted by autism will be discussed. next, the theoretical and applied significance of this research will be presented and the limitations of the study will be addressed. finally, this chapter will close with a conclusion. . summary of findings recall that the aim of this case study was to examine the dynamic, triad relationship between the child, the family companion canine, and the family unit. the objectives of this research were to observe child-canine interactions, identify strategies used to facilitate child- canine bonding and identify characteristics of children with asd, family companion canines, and families themselves that contributed to child-canine bonding. the two overarching research questions that guided this study were as follows: . is there evidence that the attachment components of safe haven, secure base, proximity seeking, and separation anxiety are evident features of the child-canine relationship? if so, to what extent are these four features of attachment evident? . what personal and external factors influence the child-canine bonding process and what are the prevalent themes characterizing child-canine bonding? three main data sources were used to gather information related to the research questions: ) semi-structured interviews with the parent(s); ) field notes; and ) observations of child-canine interactions. first, the analyses revealed that the child-canine bond in children with asd exhibits the dynamics of an attachment relationship and secondly, seven emerging themes characterizing child-canine bonding emerged. important factors influencing the formation of a strong child-canine bond were identified and included characteristics of the child with asd, characteristics of the companion canine, and characteristics of the family unit. the key findings of this study will be discussed in this chapter. . . the nature of the child-canine relationship one of the primary questions guiding this study was whether the child-canine relationship could be conceptualized as an attachment relationship. julius ( ) postulates that if attachment theory is representative of the relationship between humans and their companion animals, then the companion animal has to meet the criteria of an attachment figure as defined by ainsworth ( ). recall that an attachment relationship is defined as having the following characteristics: ) the physical proximity of an attachment figure is associated with positive emotions; ) the attachment figure is approached in the case of emotional stress in order to achieve proximity and a feeling of security; ) the attachment figure is a reliable source of comfort and reassurance that allows for exploration; ) and ) separations from the attachment figure are associated with negative emotions (ainsworth, ). the present study suggests that children with asd can develop attachment-like relationships to their companion canines. proximity maintenance was identified as the most prevalent feature of attachment exhibited in the child-canine relationship. the children with asd often maintained close physical nearness to their companion canine(s) and would seek out their companion canine(s) immediately following a separation (e.g. returning home from school and/or extra-curricular activities). interestingly, several families reported that the need for their child(ren) with asd to maintain proximity to the companion canine(s) was often greater than the need to maintain proximity to fellow peers and even members of the immediate family. this was perhaps one of the most important findings as it signifies how meaningful the child-canine relationship can be for a child with asd. following proximity maintenance, safe haven was the second most prevalent feature of attachment in the child-canine relationship. parents reported that the companion canine(s) provided comfort for their child(ren) with asd during times of emotional upset. as a result, the children with asd were better able to regulate their emotions during distressing situations. the companion canine appeared to provide an emotional outlet for the children with asd, which, in turn, relieved pressure felt by the family by reducing the intensity and occurrence of emotional breakdowns. many children with asd have a strong need for a structured, routine environment, as change can create feelings of fear and/or anxiety which may lead to emotional outbursts (burrows, adams & spiers, ). this study revealed that the companion canine may provide a source of consistency in an ever changing environment for a child with asd. interestingly, parents reported that the companion canine(s) also provided comfort in the form of physical contact and social support for their child(ren) with asd. i think just that unconditional love… it would be good for the kids’ self-esteem and what not, they have trouble at school, they don’t have a lot of friends and we thought with canines, no matter what happens they will love them. he will want to kiss them when they get home from school and even if we are mad at them or the school is mad at them. that was something we thought it would be good for them. that consistency ( ). outside of school, the children with asd would spend a majority of their time with their immediate family (e.g. parents, siblings, and grandparents). as a result, they were consistently in proximity to a number of family members. not surprisingly, parents reported that their child(ren) with asd would most often seek comfort from their mother during times of distress. remarkably however, if the mother was not present during a time of emotional upset, several of the children with asd reportedly turned to their companion canine for comfort despite the availability of alternative sources of comfort (e.g. their father, siblings and/or grandparents). this is indicative that the companion canine is a selective preference as an attachment figure and not merely influenced by physical proximity. furthermore, when parents were asked who their child with asd turns to during times of distress, two fathers surprisingly reported similar statements explaining that there was a “pecking order” of who their child with asd turns to when upset. both fathers stated that their child with asd will seek their mother first, then their companion canine(s), and lastly, themselves. proximity maintenance and safe haven were identified as the two most prevalent features of attachment in the child-canine bond. this now guides us to our third most prevalent feature of attachment; secure base. throughout some of the discussions with the participating families, it was noted that safe haven and secure base would often coincide. for example, the companion canine would act as a reliable and consistent source of comfort (safe haven) for the child with asd, which, in turn, would nurture a sense of felt security (secure base). parents frequently reported that the companion canine provided a sense of comfort to their child(ren) with asd, which, as a result, would increase their child’s(ren’s) willingness to engage situations that might otherwise be stressful. childone would normally be very upset (travelling) long distance but with the canines next to him that seems to comfort him. whenever we travel, one of the canines will be sitting beside childone and when we are driving he will be pinching the ears, stroking the head, just pinching the canine. one of the sweetest things, he will grab the folds of their ears and rub them against his lips just because they’re soft, or he will rub them on his cheek…he also likes to put his face in caninethree’s belly ( ). separation anxiety was the least prevalent feature of attachment evident in the child-canine relationship. similar to kwong’s ( ) challenges examining the human- assistance canine relationship, the assessment of separation anxiety in the current study was complicated. in kwong’s study, separation anxiety was difficult to assess due to the participants’ functional dependence on their canine. in the current study, most of the children with asd were never apart from their companion canine and expressed no interest in being separated. parents did indicate however, that the possibility of their child(ren) with asd being separated from his/her companion canine(s) would likely cause significant upset for them. . . factors influencing and benefits from the child-canine bond seven major themes characterizing child-canine bonding emerged during the cross-case analysis. emerging themes included external and personal factors that contributed to or detracted from the child-canine bond (i.e., canine acquisition, bonding strategies, canine characteristics, canine as family member, and family profile), benefits of owning a companion canine for families impacted by asd, and miscellaneous themes not fitting in categories above (i.e., incubation period, bi-directional effects, and no competing interests). these findings are discussed in more detail below. . . . canine acquisition when and how the canine was acquired emerged as a prevalent theme that appeared to effect the strength of the child-canine bond. it became evident that a stronger child-canine bond occurred between the children with asd and their companion canine when the family acquired the canine as a puppy. previous research has postulated that children are more likely to establish a strong bond with an animal when they understand the animal’s specific needs and participate in caring for it (melson, ). a puppy requires constant care and regular obedience training which may have provided an opportunity for the children with asd to establish a stronger bond. it has also been established that activities shared together between a child and their canine develop a stronger bond (jalongo, ). therefore, children who participate in attending to a puppy’s needs are investing more to establish an attachment relationship (jalongo, ). in addition to the age of the canine at the time of acquisition, the timing when the canine was acquired also appeared to impact the strength of the child-canine bond. for example, children whose families integrated a companion canine into their home following their asd diagnosis exhibited a stronger bond compared to those who integrated a canine into their home prior to their asd diagnosis. this subtheme was apparent even if the family already had a companion canine living in the family home who was acquired prior to their child’s asd diagnosis (with which their child appeared to have no particular attachment to the canine) and later, following their child’s asd diagnosis, integrated another companion canine into the home (with which their child demonstrated a strong bond to). this was illustrated in case where the family already had companion canines in the house prior to their son’s asd diagnosis with which he demonstrated no particular interest towards. i didn’t think childone would ever connect with a canine because we already have bouone then we bought boutwo, he was our leonberger, and he never paid any attention to them at all. so we bought them (the bullcanines) never knowing there would be a bond between them ( ). perhaps the intentionality of acquiring a companion canine specifically for the child(ren) with asd positively influenced the development of a strong child-canine bond. for example, the families who acquired a canine following their child’s asd diagnosis reported specifically selecting a canine to match their child’s needs (e.g., a smaller sized breed that is playful and tolerant of multiple behaviours). furthermore, establishing a bond immediately following canine acquisition provides an opportunity for a stronger child-canine bond to occur (jalongo, ) and in the current study, appeared to contribute to the development of an attachment relationship. the timing when the companion canine was acquired (e.g., pre or post-asd diagnosis) as well as decisions and considerations regarding canine selection evidently affected the strength of the child-canine bond. a pattern emerged between the acquisition of companion canines and the strength of the child-canine bond. for instance, families who made intentional decisions regarding canine selection reported a stronger child-canine bond between their child(ren) with asd and their companion canine(s) compared to the families who reported being opportunistic regarding canine selection (e.g., flexible, open and not driven by specific canine selection criteria). these findings were also corroborated by the researcher’s observations who noted each child’s proximity to the companion canine, initiation of contact, and each child’s attitude towards the canine (e.g., displays of affection, demonstration of pride toward the canine, and initiation of social communication with the researcher when discussing the canine). intentionality was defined as careful and purposeful decisions regarding canine selection. the most widely reported decisions regarding canine selection between the families who intentionally acquired a canine included selecting a breed that suited the families’ needs and lifestyle and the size of the canine. across cases, breed considerations predominantly revolved around temperament and canine size. families who made intentional decisions regarding canine selection reported a stronger child-canine bond compared to the families who were opportunistic and not guided by specific canine selection criteria. for families impacted by autism who are considering integrating a companion canine into the care plan, this finding signifies the importance of carefully selecting a companion canine that meets the child’s, as well as the family unit’s needs. . . . bonding strategies strategies that appeared to influence the bonding process between the child(ren) with asd and the companion canine(s) also emerged as a prevalent theme. strategies included those that were intentionally implemented by the parents (e.g., training the canine to sleep in the child’s bed, involving the child in the care of the canine, having the child enroll and take the canine to obedience classes) as well as unintentional strategies (e.g., involving in the child in the canine-acquisition process, continued obedience training well after a bond has been established) that appeared to contribute to the child-canine bonding process. strategies included those that occurred: ) prior to integrating the companion canine(s) into the family home (pre-canine acquisition); ) immediately following acquisition of the companion canine(s) (post canine acquisition); and ) continuing after a bond between the child with asd and the companion canine had been established (ongoing). involving the child(ren) with asd in the canine-acquisition process appeared to foster positive attitudes and excitement about integrating the companion canine(s) into the family home as well as helped prepare the child(ren) with asd for changes. additionally, encouraging positive interactions such as play activities, obedience training, and caring for the canine corresponded to a stronger child-canine bond. these activities also provided an opportunity for the child to learn how to care and love another sentiment being, which for a child with asd, is important given their challenges developing cognitive empathy (smith, ; ). having the children with asd spend time with the companion canine helped develop trust, confidence, and love and created a feeling of familial belonging. activities such as playing, walking, hiking and training appeared to nurture intimacy therefore positively contributing to an attachment relationship. in addition, obedience training taught the child about cause and effect and provided the child a way to communicate with the canine. interestingly, for children with asd who have social deficits and may not have the ability to use voice commands as in case , signs can be used to teach commands (e.g., holding your hand out with your palm facing up means “sit”). ongoing strategies such as continued obedience training (e.g., ten minutes of obedience training per day), physical contact (e.g., petting, cuddling, hugging) playing with the canine, and continued care of the canine (feeding, walking, grooming, and picking up after the canine) encouraged the maintenance of a strong child-canine bond. . . . canine characteristics the characteristics of the canines had a salient influence on the child with asd as well as the family unit. filiatre, millot, and montagner ( ) claimed that a canine’s characteristics influences children’s interaction with them. canine characteristics include age, size, and behavioural traits. filiatre and colleagues postulated that older canines were less likely to interact with children due to a lack of energy and tolerance. it was observed in this study that the children with asd would often seek out the companion canines during times of distress or anxiety and would engage in physical contact (e.g., pinching, grabbing, touching) with the canines to alleviate stress. according to filiatre and colleagues ( ) older canines might be less tolerant of physical touch from children and therefore less inclined to interact with them. comparatively, the families with younger canines who were integrated into the home as a puppy would happily engage with the child(ren), were more energetic and playful, and more tolerant of multiple and unpredictable behaviours often exhibited by children with asd. children with asd can be very tactile and may seek sensory stimulation when feeling anxious, stressed or excited (e.g., pinching, grabbing, touching). canines who are not accustomed to these behaviours may become fearful or avoidant of that stimuli (burch, ). this avoidant behaviour was both reported and observed in the families who had older canines in their home (i.e., cases , , & ). the age of the canine, as well as the time of acquisition, may explain this trend. during a puppy’s developmental stages, socialization and habituation is established (burch, ). according to burch ( ), socialization can be described as the process whereby the canine learns how to recognize and interact with the species it cohabits with. for the domestic canine, this would include the family unit and other family pets (e.g., cats, birds, guinea pigs). by learning how to interact with the family and other species, the canine develops the ability to recognize whether or not it is being threatened and how to recognize and respond to the intentions of others. burch ( ) described habituation as repeated exposure to a particular stimuli. when a puppy is exposed to a specific stimuli several times it will become accustomed to that stimuli and learn to ignore it. this might explain why a stronger child-canine canine was reported and observed in the families who acquired the companion canine as a puppy. perhaps because the puppies were exposed to these behaviours characterized by children with asd during the developmental stages, it provided the puppies with the opportunity to become accustomed to these behaviours therefore influencing their willingness to engage with the child(ren) with asd. moreover, younger canines might be more likely to engage with the child(ren) and exhibit more playful behaviours. when the canines elicited engagement from the children with asd by reciprocating interest through play and responding to instructions, a stronger child-canine bond was evident. in addition to age, size of the canine arose as an important characteristic impacting the child-canine bond. large breeds appeared to present an obstacle from the bonding process with concerns of being overwhelming for the child with asd as well as the family unit. small- medium sized breeds were the preferred size chosen by the families with reported fears that a larger breed might be overpowering (e.g., pulling the child while walking or knocking the child over). portability of the canine, which corresponds to size of the canine, also affected the child- canine bond. having a small-medium sized breed of canine allowed the families to easily include the canine in family travel as well as incorporate them into their daily routines (e.g., driving in the car, laying on the couch, sleeping in the child’s bed). perhaps as expected, by consistently including the canine in the child’s day-to-day life, the child-canine bond strengthened. when the families were asked what drew them to acquiring their particular canine(s) versus other canines they may have considered, temperament emerged as the primary reason across cases. a stronger child-canine bond was evident in the families who described their canine as being submissive (e.g., readily surrenders authority, highly trainable, reliable) tolerant of multiple behaviours (e.g., stemming behaviours, pinching, squeezing), and “bombproof.” not surprisingly, these findings indicate that children with asd are most likely to benefit from interacting with canines that are well-behaved and show high affinity for human social contact. further, canines who exhibited dominant, possessive and/or aggressive temperament traits were described as being undesirable across cases. although one family reported concerns over their canine’s temperament (case ), neither dominance nor aggression problems were negatively associated with the child-canine bond. it should be noted that in this isolated case, the canine was only weeks of age at the time of the interview. therefore, the dominant, possessive and aggressive behaviours might have been exaggerated given the young age of the canine and lack of training at that time. this finding highlights the notion that canines exhibit individual characteristics that affect their behaviour (gosling, ). although this family ( ) had previous experience taking care of and bonding with their neighbours goldendoodle, their goldendoodle puppy exhibited behaviours that varied from their neighbours goldendoodle. there is an erroneous tendency to generalize canine-related findings to canines as a species rather than canines as individuals (coltea, ). this signifies that even canines from the same breed and in the same family may behave very differently from one another, highlighting the need for families to consider a canine’s individual characteristics when selecting a companion canine for their child with asd. . . . canine as family member how the companion canine was situated in the family system appeared to impact the strength of the child-canine bond. how the families treated and viewed their canine(s) appeared to influence how, in turn, their child(ren) with asd viewed and treated the companion canine. in the families where the canine was viewed as a member of the family and included in day-to-day activities (e.g., sitting on the couch with the family, sleeping in the bed, included in family travel), a stronger child-canine bond was evident. in case , the family owned several companion canines with which their son with asd exhibited no particular interest towards. when they acquired their two companion canines following their son’s asd diagnosis they reported that “they were the first canines we had that we allowed to come up on the couch and cuddle.” they offered that perhaps their son saw this interaction which helped establish a bond. this correlation is evidenced by melson ( ) who suggested that parental influence needs to be investigated when looking at children’s interactions with companion animals. melson ( ) postulated that parents’ attitudes shape children’s relationships with others. when the parents viewed the canine as a family member they were more involved in their children’s interactions with the companion canines. for example, the parents created the context in which their children interacted with their canines. the current study supports the view that children’s bond with their canines are positively correlated with their parents’ bonds suggesting that the parents’ attitudes towards the companion canine(s) are mirrored by the children (coltea, ). by families encouraging the canines’ participation, the children with asd appeared to develop a strong attachment relationship. . . . family profile welsh ( ) suggested that previous interactions with canines are important in defining individuals’ present interactions with companion canines. this finding was evident in both the children with asd and the parents. children with asd who had previous experience with animals exhibited a strong bond with their companion canine(s). previous experience was not limited to canines and did not require extensive involvement with animals however it was identified that the participating children who were accustomed to having other family pets and/or being around other pets formed a stronger bond with their companion canine. parental prior knowledge and experience appeared to influence canine selection, which, in turn, influenced the child-canine bonding process. knowledge regarding canine behaviour, breed characteristics, and research on the therapeutic benefits canines can have on children with asd, influenced the families decisions concerning canine selection. families who reported positive previous experiences owning canines expressed a consistent understanding that a companion canine could provide therapeutic benefits for the family unit as well as children with asd. a strong knowledge base and previous experience owning canines appeared to increase understanding regarding what type of canine would best suit their child’s needs as well as fit with their family’s lifestyle. in addition to child previous experience and parental knowledge and experience with canines, family motivation also contributed to the child-canine bonding process. it has been established that motivation affects behaviour (maehr & meyer, ). motivation directs behaviour, leads to increased effort and energy, and increases initiation and persistence in activities (maehr & meyer, ). not surprisingly, when parental and familial motivation to integrate a canine into the family was shared and the motivation to acquire a canine was specifically for the child(ren) with asd, a stronger child-canine bond was evident. further, a stronger child-canine bond was evident when the children with asd were excited about integrating a companion canine into the family home and demonstrated motivated behaviours (e.g., persistently asking for a canine, demonstrating responsibility for canine ownership, writing out a list of things he/she will do to take care of the canine). it must be noted that children with more severe forms of asd may lack the ability to display typical motivational behaviours due to deficits in social communication. this however, did not appear to decrease the likelihood of an attachment relationship forming between the child with asd and the companion canines in case . although child motivation emerged as a prevalent theme across most cases, it evidently cannot be generalized to all families impacted by asd. . . . familial benefits and positive effects for the children with asd mentioned earlier in the results chapter, benefits elicited by companion canines for families impacted by asd was not initially intended to be a focal point in this study. however, positive influences identified from the presence of the companion canines were routinely discussed across cases and therefore could not be omitted from the study. the children in this study benefitted from their companion canines in various ways, similar to what has been described in previous research (e.g., carlisle, ; bystrom & personn, ). many of the parents referenced that the canines’ presence provided a sense of consistency for their children with asd and supported them emotionally through companionship, unconditional love and stress relief. it has been identified in previous research that companion animals can provide socio-emotional support that facilitates coping, recovery, and resilience (e.g., cain ). bonds with pets offer comfort, affection, and sense of security which can reduce feelings of vulnerability, loneliness, or depression (welsh, ). families impacted by asd also receive similar benefits. for instance, one of the family’s (case ) described how their children with asd would often experience feelings of isolation due to difficulties establishing peer-peer relationships at school. since acquiring their companion canine, they stated that their children now acquire socio-emotional support through the unconditional love provided by the companion canine. in addition to providing socio-emotional support, many of the parents reported that the companion canines’ facilitated learning for their child(ren) with asd. although the children with asd may have had difficulties understanding other people’s perspectives and establishing attachment relationships outside of their immediate family, they were able to learn about emotions and attachment based from the experiences provided by their companion canines a companion canine can be accepting, affectionate, loyal and consistent, qualities that are necessary to satisfy a person’s basic need to be loved and feel self-worth (nebbe, ). many of the parents reported that their child(ren) with asd were able to experience these feelings provided from their companion canine. for many of the children with asd, experiencing a bi- directional attachment (i.e., a mutual interaction between the companion canine and the child. the child demonstrates attachment behaviours towards the companion canine and the companion canine demonstrates attachment behaviours towards the child) was a novel experience. children with asd often face challenges in establishing and maintaining social connections due to the social complexities often associated with peer-peer and peer-adult relationships, therefore, bonding with a companion animal might be easier to negotiate (bystrom & personn, ). the child-canine relationship was often described as a strong, unique and deep connection. this is in accordance with boris levinson’s ( ) theory of emotional relationships between children and animals and mcnicholas and collis’s ( ) finding that people with autism may exhibit behaviours toward animals that they do not exhibit toward their family. the findings from the current study suggest that the child-canine bond is unique in the way that the children with asd demonstrate more affectionate and positive social behaviours than they do with people. this is in alignment with baron-cohen, leslie, and uta’s ( ) theory of mind. baron-cohen and colleagues ( ) postulate that children with autism face challenges in understanding thoughts different from their own. this has been suggested as one of the reasons children with autism have trouble negotiating peer-peer and peer-adult relationships. although canines are interactive, children perceive them as non-judgemental participants and are not influenced by the expectations of typical human relationships (friesen, ). the absence of the necessity to “read” a canine’s mind may provide an explanation for the increased ability of a child with asd to interact in a social way with a canine (solomon, ). this unique interaction offers typical and atypical children a valuable form of social and emotional support (friesen, ). in addition to this unique child-canine connection, many of the parents reported that the interactions with companion canines facilitated considerable growth in the areas of emotion regulation, perspective taking, and empathy. these findings are significant given children with autism often have specific deficits in these areas (baron-cohen & wheelwright, ). baron- cohen and colleagues ( ) posit that children with autism may have a sever deficit in empathy which underlie difficulties in social interaction. the companion canines in the current study appeared to develop empathy in the children with asd which may have contributed to their ability to take perspective and recognize the needs of others which in turn, increased social interactions. this ability to think of others was also enabled through the responsibilities associated with caring for an animal. responsibility-based relationships require the ability of the individual to think of and recognize the needs of others based on contextual information as well as expressions, words and/or actions (smith, ). caring for a companion animal requires the ability to recognize the animal’s needs without the use of verbal communication. parents reported that by having their child(ren) with asd care for their companion canine(s) they saw a substantial increase in maturity, responsibility, and capability. caring for another living being requires the ability to think of others, which can be a difficult issue for children with asd, signifying the significance of this finding. although the companion canine initiated these positive developmental changes they were reportedly transferred to other areas in their lives including peer-peer and peer-adult relationships. interestingly, social skills development was evident across cases. the companion canine provided consistency for the children with asd reducing their feelings of anxiety during stressful situations. with a reduction in anxiety, the children may have become more willing to engage in activities outside of their home increasing their opportunities to expand their social world. in addition to reducing anxiety, the presence of the companion canines also appeared to reduce social barriers. the canine would often attract their peers and other people in public settings which, in turn, provided an opportunity for the children with asd to practice social skills. furthermore, the children with asd were often described by the parents as being proud of the canine. the canines were a comfortable and socially acceptable topic to discuss, for children with verbal skills, this pride often resulted in the children wanting to “show off” their canine which in turn, enabled social interactions. perhaps the most significant positive impact on the family systems were the canines’ role in managing behavioural challenges (e.g., emotional breakdowns/tantrums, resistance to change, and tolerance). the canines acted as a form of support for the children with asd which appeared to alleviate some of the negative outcomes for the parents. researchers examining coping strategies for families impacted by autism emphasize the importance of helping parents develop coping strategies that reduce strain on the family (sivberg, ). in the current study, the parents reported that the presence of the companion canine has encouraged normalization of day-to-day living in the home and in the community. previous research by burrows and colleagues ( ) examining how autism trained service canines impact the family system are in alignment with the current study in that the companion canines also provided family independence and functioning. interventions that maximize the family’s independence and functioning are two important components needed to help families impacted by autism cope with autism. typical activities such as driving in the car, recreational activities, and social outings were all facilitated by the companion canine(s). the presence of the companion canines appeared to have a calming effect on the children with asd which reduced the occurrence of emotional breakdowns. . . . miscellaneous themes given the inevitable changes that occur (e.g., changes to daily routines and changes to the family system) when integrating a companion canine into the family home, some children with asd may take longer to become accustomed to the new addition. one family in particular (case ) reported that an “incubation time” of approximately six weeks occurred before any evidence of a bond being established. given this capriciousness, families impacted by autism who are considering acquiring a companion canine for their child with asd should be aware that the timing to establish a bond can vary across cases. another interesting theme that emerged in a discussion with case was their child’s acceptance of sensory contact from the canines that would not normally be accepted from another human being. this finding was termed as a bi-directional effect. described earlier in the results section, the canines in this study tolerated multiple and unpredictable behaviours characteristic of children with asd. in turn, the children accepted affectionate behaviours from the canines (e.g., licking, nudging, pawing, barking) that would normally not be accepted or tolerated. currently there is no evidence in the literature to explain this phenomenon. children with asd often exhibit highly restricted, fixated interests that are heightened in intensity or focus; such as a strong attachment to or preoccupation with unusual objects, or excessively circumscribed or perseverative interests (dsm- ; american psychiatric association, ). it became evident that these competing interests (e.g., tech gadgets) may usurp interactions with companion canine. therefore, early-on in the canine acquisition phase, families may want to consider limiting competing interests that could potentially detract from interactions with the companion canine and consequently, the bonding process. . . limitations the findings should be considered in light of several limitations. first, the use of a relatively small sample size narrows the frame of reference for this study and limits the ability to wholly represent this population. although small sample sizes are considered to be appropriate for qualitative research (patton, ), this is a limitation that is important to consider when reading this study, as these findings may not be representative of all families with a child on the autism spectrum and a family companion canine. considering too that families self-selected for participating in this study. furthermore, only families who reported a strong child-canine bond were included in the study. it is possible that if families who reported a weak child-canine bond were included, comparisons could be made and additional themes may have emerged. as with any research study, there were inherent time constraints to conduct the study. in addition, the interview style of data collection has inherent limitations as it is subject to the biases of the both interviewer and the participating subjects. in order to include the children themselves and reduce potential bias, the researcher collected observational data of child-canine interactions. although observational data was collected throughout the interview process, it was difficult to perfectly time a natural interaction between the child(ren) with asd and the companion canine(s). furthermore, this study was limited to being conducted within the homes of each participating family. examining this unique relationship in a variation of contexts (contexts outside of the home) may provide further insights into the child-canine bonding process in children with asd. in addition, when identifying what, if any, features of attachment were evident in the child-canine relationship, observational data of secure base was limited due to the time constraints of the study (e.g., observational data was collected at one time point and in the families homes rather than multiple times in multiple locations). additionally, on multiple occasions during the analyses, the researcher found it difficult to differentiate between safe haven codes and secure base codes. furthermore, the identification of separation anxiety was complicated due to the fact that most of the children with asd were never separated from their companion canine and parental reports were relied upon. moreover, length of companion canine ownership varied between families. this variation made it difficult for a few of the families to accurately answer some of the interview questions (e.g., when case was asked whether their children with asd seek comfort from their canine when upset the parents reported that there has not been an opportunity to observe that interaction since they only recently acquired the companion canine). . . implications this exploratory case study is a contribution to the limited human-animal bond literature examining child-canine bonding in children with asd. the intent of this study was to contribute knowledge that service providers and families who are impacted by asd might draw upon when considering integrating a companion canine into the care plan. the most pressing implications of this study’s findings for theory, practice, and research will be presented in the following sections. . . . implications for theory both bowen’s family systems theory and bowlby’s attachment theory were used to guide the current study. given that the family system is the most influential system for typical children (bronfenbrenner, ) and subsequently, for children with asd (cridland et al., ), this study demonstrates the value of utilizing a family systems approach as a guiding framework for family-focused asd research. in a review by cridland and colleagues ( ), the authors highlight the need to conduct family-focused asd research in order to increase our understanding of the impact of asd and inform support services for these families. in addition to providing a framework to conduct this study, family functioning and how the companion canines were situated within the family systems appeared to impact the strength of the child- canine bond. this finding highlights the notion that “research focusing on within families is critical for developing an understanding of how to best support families living with asd (cridland et. al., , p. ).” applying a family systems approach when conducting research on the impact of both formal and informal support services for children with asd sheds light on the importance of how these services are situated within the family unit (heiman & berger, ). this study provides evidence that using family systems theory is an appropriate, and perhaps critical, approach to drive and inform future family-focused asd research. in addition to bowen’s family systems theory, bowlby’s attachment theory proved to be an appropriate framework to categorize child-canine bonding in children with asd. studies investigating human-animal bonding using bowlby’s attachment theory have been conducted and its application has been successful (e.g., beck & madresh, ; kurdek, ; kwong, ). despite its application on previous studies examining human-animal bonding, to date, this is the first study to utilize bowlby’s attachment theory to investigate the relationships between children with asd and their companion canine. the results from the current study suggest that the bond between children with asd and their companion canine has the potential to fulfill the same attachment functions as human relationships. this study provides evidence that bowlby’s attachment theory is an appropriate framework when examining human-animal bonding in children with asd which, in turn, will inform future research in this field. . . . implications for practice emergent themes identified in this study suggest that there are several benefits to having a companion canine in the family system of the child with asd that extends to the family unit. this data contributes to existing literature on the therapeutic benefits of the human-animal bond for children with asd and can be used to further understand the social and emotional benefits of having a companion canine, particularly for families faced with the unique stressors of having a child with autism. from an applied perspective, these findings invite service providers working with children with asd to support families in exploring this possibility. in addition, the findings inform parents seeking to support their children through the addition of a companion canine. the findings from this line of research have scope to inform parents and help ensure a strong child-canine bond is established. there are familial, social, and economic ramifications arising from increasing awareness of the factors in children, in companion canines, and within families that nurture successful child-canine bonds which warrants the need for further investigations. . . . implication for future studies the findings from the current study converge to suggest that companion canines can fulfill attachment needs for children with asd. these findings highlight the challenges faced by families who decide to integrate a companion canine into the care plan for their child with asd due to social policies that place restrictions on companion canines. for example, given that acquiring a companion canine for a child with asd is such a new phenomenon, there are currently no policies in place to allow companion canines into the school system. this issue was raised by multiple families in the study. research in applied settings such as schools could increase awareness regarding the familial, social, and economic benefits of acquiring a companion canine for a child with asd. in addition, future research could help inform policy makers and educators so that the challenges are minimized and allowances could be made to bring a companion canine into a classroom setting. furthermore, the findings advance future studies in the field of hai by informing researchers about the nuanced interactions taking place within family contexts that facilitate child-canine bonding and provide insights into the factors that influence this bonding process. given the need for alternative therapies and interventions for children with asd, the accessibility and feasibility of acquiring a companion canine over a trained autism service canine, and the merits of acquiring a companion canine for children with asd, further research is warranted. this study encourages the exploration of alternative family-based support for families impacted by asd that may extend beyond the existing conventional practices. the process of acquiring a companion canine that meets the needs of the family and the child with asd as well as implementing strategies to encourage a strong child-canine bond may be a critical piece in the success of the child-canine bond. future studies are warranted to examine further elements of this process and their outcomes. finally, future studies examining bonding in children with asd are needed to fully understand this unique relationship. to date, studies investigating child-canine bonding in children diagnosed with level- asd have not been identified. it is recommended that researchers who seek to examine this phenomenon in children with a more severe asd diagnosis and who may be non-verbal, immerse themselves in the field longer and continue to utilize observation as a primary research tool to identify the nuanced interactions that exist to indicate the presence or absence of bonding (e.g., proximity and initiations of interactions and touch). . . conclusion autism is the most common neurological disorder affecting children (center for disease control and prevention, ) and therefore, there remains a critical need for further studies to investigate the effectiveness and successful implementation of therapeutic interventions for this population. human-animal therapeutic interventions have only recently become recognized and appreciated for the beneficial effects the human-animal bond and more specifically, the child- canine bond, can have on children with asd. the findings of this study provide important suggestions for how families impacted by asd can integrate a companion canine into the care plan and help facilitate a strong child-canine bond. the present study demonstrated that children with asd may be capable of forming an attachment relationship with their companion canine. for children with asd, having the ability to bond with a companion canine is significant given this population often faces challenges establishing relationships which can lead to social isolation and feelings of loneliness (ekas & whitman, ; o’haire, ). the child-canine bonding experience was reportedly associated with positive emotions that align with that of an attachment relationship (e.g., empathy, love, trust, joy). these positive emotions provided an opportunity for the children with asd to experience attachment outside of their immediate family which, in turn, increased their likelihood of establishing peer-peer and peer-adult relationships. thus, developing a relationship with a companion canine may help children with asd to develop a capacity to trust and care for others that may generalize to human relationships. although the strength of attachment varied among cases, the social and emotional benefits of having a family companion canine were still evident. themes and subthemes identifying factors that contributed to, or detracted from, the child-canine bonding process emerged through the collection of interview and observational data. these emergent themes provide insights into the phenomenon of child-canine bonding in children with asd and can be used to further understand 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( ). pets as safe havens and secure bases: the moderating role of pet attachment orientations. journal of research in personality, ( ), - . doi: . /j.jrp. . . appendices appendix a – consent form consent form for primary caregiver(s) research project title: bonding in children with asd: findings within and across case studies study team: principal investigator: dr. john tyler binfet, ph.d. assistant professor faculty of education university of british columbia, okanagan campus co-investigator: kathryn struik, bschk m.a. student in the faculty of education university of british columbia, okanagan campus purpose of the study: this study is being conducted by kathryn struik (researcher) under the supervision of dr. john tyler binfet, as part of the requirement for the masters of arts program in the department of education at the university of british columbia, okanagan campus. the purpose of this study is to learn about the relationship between your child with autism and the companion canine. the final master’s thesis document will be available as a public document through the university of british columbia and on the internet through circle. results will be prepared into a thesis document, reports, scientific papers, and presentations. if you or your child feel uncomfortable participating in this study you can stop participating at any time. your participation in this study is voluntary. you or your child may decide not to participate or you may withdraw from the study at any time and it will not impact you or your child in any way. if you withdraw from the study, you may elect to withdraw any or all of the information you have provided. study procedures: if you agree to participate in this study, you and the researcher will schedule a time and date for a pre-visit. the purpose of the pre-visit is for the researcher to introduce herself to you, your child with asd, your family, and your companion canine. in addition, the researcher will collect and authorize the consent forms. you will then be asked to complete a short questionnaire that asks demographic questions. it is anticipated that the pre-visit will take - minutes. once the consent form is explained and the demographic information is collected, you and the researcher will schedule a time and date that is representative of a typical experience for you, your child with asd, and your canine companion, to conduct the interview and collect observational data. for the study, you will be asked to participate in a minute audio-taped interview focusing on the relationship between your child with autism and the companion canine. the interview will be audio-recorded for accuracy purposes only and the recording will be destroyed upon completion of the study. however, if you prefer to not have your interview audio-recorded, the researcher will take notes throughout the interview process. you can refuse to answer any questions that you do not feel comfortable answering. in addition to the interview, the researcher will collect observational data of child-canine interactions. observational data will be representative of a typical experience shared between your child with autism and the companion canine. it is anticipated that it will take approximately minutes to collect sufficient observational data. risks: this study includes no risks greater than what one would experience in their daily life. we do not think there is anything in this study that could harm you or be bad for you. please let one of the study staff know if you have any concerns. some of the research questions may seem sensitive or personal. while we do not anticipate that any questions will upset you, if they do, you can take a break, withdraw from the study, or not answer any questions you do not want to. potential benefits: you may not receive any direct benefits for participating in this study, however, the information you provide will assist in providing insights into what influences the bonding process between a child with asd and the companion canine. this holds the potential to advance not only an understanding of autism but also inform researchers about the nuanced interactions taking place within family contexts that facilitate child-canine bonding. this information can help direct further research and inform parents seeking to support their children through the addition of a companion canine. remuneration: as a token of appreciation for participating in the study, each participating family will receive $ . confidentiality: any information provided by you to the researchers will be kept strictly confidential. the identity of participants will be protected using pseudonyms. anything linking your name to the research materials will be stored in locked filing cabinet accessible only to my supervisor and myself. the data will be stored at ubc for five years following publication and will then be destroyed. for more information: if you require any additional information about this study or have any questions, please feel free to contact either: kathryn struik, principal investigator phone: - - email: kathrynstruik@gmail.com or dr. john tyler binfet, supervisor phone: email: johntyler.binfet@ubc.ca contact for concerns: if you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the research participant complaint line in the ubc office of research services at - - - or the ubc okanagan research services office at - - . it is also possible to contact the research participant complaint line by email (rsil@ors.ubc.ca consent:  i have read and understand this consent form.  i have received a copy of this consent form.  i consent / i do not consent to my child’s participation in this study (circle one).  i consent to the audio recording of this interview / i do not consent to the audio recording of this interview and would prefer the researcher to take notes instead (circle one). mailto:kathrynstruik@gmail.com mailto:johntyler.binfet@ubc.ca  i consent to the visual recording of this study (e.g., observations).  i consent to all other methods of data collection (e.g., paper-and-pencil, questionnaires, and interviews).  i consent to participate in this study. signature______________________________ today’s date________________________ printed name_______________________________ researcher’s signature_____________________ date____________________ request for follow-up information: i would like to receive a copy of the brief report of findings and results from the study. yes________ no_________ please send the report to: name:_____________________________________ mailing address:__________________________________ ____________________________________ ____________________________________ ____________________________________ postal code:__________________ appendix b– consent form consent form for participants involved in naturalistic observation research project title: bonding in children with asd: findings within and across case studies study team: principal investigator: dr. john tyler binfet, ph.d. assistant professor faculty of education university of british columbia, okanagan campus co-investigator: kathryn struik, bschk m.a. student in the faculty of education university of british columbia, okanagan campus purpose of naturalistic observations: this study is being conducted by kathryn struik (researcher) under the supervision of dr. john tyler binfet, as part of the requirement for the masters of arts program in the department of education at the university of british columbia, okanagan campus. the purpose of the naturalistic observations are to observe the interactions shared between the child with asd and the companion canine. the final master’s thesis document will be available as a public document through the university of british columbia and on the internet through circle. results will be prepared into a thesis document, reports, scientific papers, and presentations. if you feel uncomfortable participating in this study you can stop participating at any time. your participation in this study is voluntary. you may decide not to participate or you may withdraw from the study at any time and it will not impact you in any way. if you withdraw from the study, you may elect to withdraw any or all of the information you have provided. naturalistic observation procedures: observational research is defined as research which does not involve direct interaction or contact with participants outside of their typical, daily routine and activities. observational data will be representative of a typical experience shared between a child with autism and their companion canine. if you wish take part in these observations, written consent by you or your parent/guardian (if under the age of ) is required. the researcher will take hand-written notes of observational data, however, you will not be identified by name. it is anticipated that it will take approximately minutes to collect sufficient observational data. risks: this study includes no risks greater than what one would experience in their daily life. we do not think there is anything in this study that could harm you or be bad for you. please let one of the study staff know if you have any concerns. while we do not anticipate that the observational research will upset you in any way, if it does, you can take a break or withdraw from the study at any time. potential benefits: you may not receive any direct benefits for participating in this study, however, the information you may provide will assist in providing insights into what influences the bonding process between a child with asd and the companion canine. this holds the potential to advance not only an understanding of autism but also inform researchers about the nuanced interactions taking place within family contexts that facilitate child-canine bonding. this information can help direct further research and inform parents seeking to support their children through the addition of a companion canine. remuneration: as a token of appreciation for participating in the study, each participating family will receive $ . confidentiality: any information provided by you to the researchers will be kept strictly confidential. the identity of participants will be protected using pseudonyms. anything linking your name to the research materials will be stored in locked filing cabinet accessible only to my supervisor and myself. the data will be stored at ubc for five years following publication and will then be destroyed. for more information: if you require any additional information about this study or have any questions, please feel free to contact either: kathryn struik, principal investigator phone: - - email: kathrynstruik@gmail.com or dr. john tyler binfet, supervisor phone: email: johntyler.binfet@ubc.ca contact for concerns: if you have any concerns or complaints about your rights as a research participant and/or your mailto:kathrynstruik@gmail.com mailto:johntyler.binfet@ubc.ca experiences while participating in this study, contact the research participant complaint line in the ubc office of research services at - - - or the ubc okanagan research services office at - - . it is also possible to contact the research participant complaint line by email (rsil@ors.ubc.ca consent:  i have read and understand this consent form.  i have received a copy of this consent form.  i consent to the visual recording of this study (e.g., observations).  i consent to participate in this study. signature______________________________ today’s date________________________ printed name_______________________________ researcher’s signature_____________________ date____________________ consent for children under :  i understand that the study has been explained to me and my child.  i understand that i may refuse to have my child participate without any consequences.  i understand that i and my child will receive a signed copy of this consent form.  i understand that my child’s identity will be kept confidential. i hereby consent to have my child, ______________________________ participate in the naturalistic observations of this study. signature of parent or guardian ______________________________ printed name______________________________ today’s date________________________ researcher’s signature_____________________ date____________________ request for follow-up information: i would like to receive a copy of the brief report of findings and results from the study. yes________ no_________ please send the report to: name:_____________________________________ mailing address:__________________________________ ____________________________________ ____________________________________ ____________________________________ postal code:__________________ appendix c– verbal assent form verbal assent form for children with asd research project title: bonding in children with asd: findings within and across case studies. study team: principal investigator: dr. john tyler binfet, ph.d. assistant professor faculty of education university of british columbia, okanagan campus co-investigator: kathryn struik, bschk m.a. student in the faculty of education university of british columbia, okanagan campus why am i here?: i am here to learn about the relationship between children with autism and their canine. you are invited to be in this study because we want to see how children with autism who live with a family canine bond with their canine. what will happen?: i will just be here to hang out with you and your canine. your identity will be kept a secret. you will not be asked any questions but you can feel free to ask me any questions or tell me anything about your canine. you can ask now. you can ask later. you can ask me or you can ask your parents. sometimes having people around can be stressful. if you want to be alone, take a break, or stop hanging out with me, it is ok. if you change your mind about the study you can quit at any time. you should tell me or your parents if you feel bad. if you do not want to be in the study you just have to tell me or your parents, no one will be mad at you. how you can help!: by studying how children with autism bond with their canine we may find out what causes this bond to develop. assent: i want to take part in this study. i know i can change my mind at any time. _________________________ verbal assent given yes  print name of child [the following statement and signature is required]: i confirm that i have explained the study to the participant to the extent compatible with the participants understanding, and that the participant has agreed to be in the study. ___________________ _______________ ____________ printed name of signature of date person obtaining assent person obtaining assent appendix d– verbal assent form verbal assent form for children involved in naturalistic observation research project title: bonding in children with asd: findings within and across case studies. study team: principal investigator: dr. john tyler binfet, ph.d. assistant professor faculty of education university of british columbia, okanagan campus co-investigator: kathryn struik, bschk m.a. student in the faculty of education university of british columbia, okanagan campus why am i here?: i am here to learn about the relationship between children with autism and their canine. we want to see how children with autism who live with a family canine bond with their canine. you can also be included in this study! what will happen?: i will just be here to hang out and watch how a child with autism interacts with a canine. if you are a going to be there while i hang out, i need your permission to be a part of the study! your identity will be kept a secret. you will not be asked any questions but you can feel free to ask me any questions. you can ask now. you can ask later. you can ask me or you can ask your parents. if you change your mind about the study you can quit at any time. you should tell me or your parents if you feel bad. if you do not want to be in the study you just have to tell me or your parents, no one will be mad at you. how you can help!: by being a part of this study you may help us find out what causes a bond to develop between a child with autism and a companion canine. assent: i want to take part in this study. i know i can change my mind at any time. _________________________ verbal assent given yes  print name of child [the following statement and signature is required]: i confirm that i have explained the study to the participant to the extent compatible with the participants understanding, and that the participant has agreed to be in the study. ___________________ _______________ ____________ printed name of signature of date person obtaining assent person obtaining assent appendix e – primary caregiver of child with asd: demographic survey the questions in this demographic survey are about you, your family, your child with asd and your companion canine. participant survey researcher’s initials_________________ instructions:  please answer all of the questions listed below.  for questions followed by a solid line, please write your answer on the solid line.  if you have any questions or comments about this survey, don’t hesitate to let us know. section a: about you and your family . please choose a pseudonym: o mother o father o other______________ . what year were you born?_______________ . sex o male o female . how many children do you have?_______________ . are you: o married o partnered o widowed o divorced o separated o never married . what is the highest level of education that you have completed? o less than high school o completed high school o college or technical degree/certificate o undergraduate degree o masters’ degree o doctoral degree o other________________ . what is your current occupation?__________________ . how would you describe yourself? o white/caucasian o black o korean o aboriginal/first nation o filipino o chinese o japanese o south asian o arab/west asian o latin american o other____________________ . what language do you speak most often at the home you are living in? o english o other_______________ . do you speak other languages at home on a regular basis? o yes__________ o no section b: about your child with asd . child’s age?_______________ . child’s sex o male o female . how would you describe your child’s ethnicity? o white/caucasian o black o korean o aboriginal/first nation o filipino o chinese o japanese o south asian o arab/west asian o latin american o other____________________ . child’s asd diagnosis (e.g., low functioning, high functioning, etc.): ____________________ . does your child take any medications related to their asd diagnosis? o yes o no . if your child does take any medications related to their asd diagnosis please list. ________________________________________________________________________ ________________________________________________________________________ . how old was your child with asd when you got your canine(s)? ____________________ . how attached is your child with asd to your canine? o not very attached o attached o very attached section b: about your companion canine . where did you get your canine (e.g., breeder, local animal shelter, online advertising site)? ____________________ . what breed of canine do you have? ____________________ . what is the age of your canine? ____________________ . how long have you owned your canine? ____________________ thank you for taking the time to complete this survey! appendix f – parent interview guide overarching research questions guiding the study. . how does the child interact with the canine? . what is the quality of the relationship between the child and canine? . is there evidence that the attachment components of safe haven, secure base, proximity seeking, and separation anxiety are evident features of the child-canine relationship? if so, to what extent are these four features of attachment evident? . what strategies, if any, did parents implement to facilitate a child-canine bond? open by reminding them of the aim of the study. first of all, thank you again for your enthusiasm to participate in this study. as outlined in the consent form, this study is aimed at understanding how children with autism bond with their companion canine. i am curious to find out what factors might have influenced this bond as well as what, if any, strategies were used to help nurture a strong canine-child bond. your input is critical to help us better understand human-animal bonding in children with autism as well as understand how to facilitate a strong canine-child bond and inform parents seeking to support their children through the addition of a companion canine. we will now have about a hour discussion about the relationship shared between your child and the companion canine. and just a quick reminder: these interviews are being audio-recorded and will be transcribed later. before we begin the interview, i just want to reiterate that any information provided by you will be kept strictly confidential. information i put in my report that could identify you will not be published or shared beyond the research team unless we have your permission. your participation in this study is voluntary. you may decide not to participate or you may withdraw from the study at any time and it will not impact you in any way. if you withdraw from the study, you may elect to withdraw any or all of the information you have provided. this study has been reviewed and cleared by ubc okanagan’s research ethics board. now, before we begin, do you have any questions or would you like any additional details? and i have to ask one last time: do you agree to participate in this study knowing that you can withdraw at any point with no consequences to you? canine related questions: ask the participants to reflect on their experiences when they first bought the canine and describe what features/characteristics influenced their decision to buy that particular canine. . when did you get (name of canine)? . looking back to when you first brought (name of canine) home, could you tell me what drew you to getting (name of canine) versus any of the other canines you perhaps looked at?  what did you and your family like the most about (name of canine)? . what is the most striking characteristic of your canine? . how would you describe your canine’s temperament?  could you tell me a little more about your canine? what comes to your mind first? parent related questions: ask them to reflect on what motivated them to get a canine. . we know that getting a canine is often a big decision for any family to make. what or who influenced your decision to get a canine? let the conversation unfold noticing what is talked about. when there is a pause use the following prompts to further direction:  whose idea was it to get (name of canine)?  what motivated you to get a canine?  what, if any, previous knowledge regarding the potential benefits of owning a companion canine for a child with autism did you have?  was your child involved in the canine-buying process? if so, in which ways? ask them to think about what ways they may have tried to encourage a bond between their child with autism and the companion canine. . how did you try and facilitate a bond between your child and (name of canine)?  what strategies, if any, did you implement? child related questions: ask them to think about and reflect on, their child’s relationship with the companion canine. . during a typical day, could you describe how your child interacts with the canine?  when did your child first interact with (name of canine)? . could you describe how your child is involved with the care of (name of canine)? . could you describe the quality of the relationship between your child and the canine? attachment related questions: explain to the participants that you are now going to ask questions which are guided by attachment theory, to gather insights regarding their child’s attachment to the companion canine. . who does your child seek comfort from when upset? safe haven  how comforting is the canine for your child when he/she is upset? . how has the canine influenced your child’s willingness to engage in situations that might otherwise be stressful for her/him? secure base  to what extent does (name of canine) calm your child during potential stressful situations and/or changes in routine? . how does your child cope when he/she is away from the canine? separation anxiety  what is it like for your child to be away from (name of canine) . during a typical day, who does your child spend the most time with? proximity maintenance  how much time does your child like to spend with (name of canine)? conclude interview: . is there anything important to tell me about your child’s bond with (name of canine) that was not discussed during this conversation?  do you have any questions or comments about the interview? appendix g – letter of initial contact currently recruiting: human-animal bonding in children with asd what is the study about? we are interested in studying how children with autism bond with their companion canine. families who have a child with autism spectrum disorder (asd) and a companion canine will participate. the purpose of this research is to identify what factors might influence children on the spectrum’s ability to bond with their companion canine. this study is part of research being conducted for a master’s thesis by kathryn struik. kathryn struik is directing the study under the supervision of dr. john tyler binfet, director of ubc’s building academic retention through k ’s (b.a.r.k.) canine therapy program and professor at the university of british columbia’s okanagan campus. why should i take part? autism is the most common neurological disorder affecting children. companion canines have the potential to represent an effective tool to diminish the withdrawal of children with asd by targeting the core symptoms of the disorder (e.g., impairments in verbal and nonverbal communication, social interactions and restricted patterns of behaviour). despite enthusiasm for integrating companion canines into the care plan for children with asd, little is known about how children with asd form attachment bonds with their companion canine. for example, we lack an understanding of what might influence a child with asd to bond with his/her companion canine and what, if any, strategies are used by families to ensure this bond is established and nurtured. this leads to questions about what might contribute to or detract from the bonding process and how families impacted by autism help ensure a strong canine-child bond. in order to successfully integrate a companion canine into a home environment, an understanding of the many personal and external factors influencing this interactive relationship is essential. your participation will help us better understand bonding in children with autism. the findings of this study will provide insights into what influences the bonding process between children with asd and their companion canine. in addition, this study holds promise to inform researchers about the interactions taking place within family contexts that facilitate a strong child-canine bond as well as inform parents seeking to support their children through the addition of a companion canine. who can participate?  families with a child aged - years with autism and their companion canine *family canines will be restricted to companion pets with no formal therapeutic or service training. (standard obedience training is permitted). what will we do?  a brief questionnaire will be administered in order to obtain demographic information about yourself, about your child’s asd diagnosis and previous experience with animals, and about your companion canine.  a hour interview focusing on the relationship shared between your child with asd and the companion canine will be conducted.  - minutes of observation of child-canine interactions will be noted.  in appreciation for your time, you will receive $ where will it be conducted?  this study will be conducted in your home and scheduled at your convenience. who can i contact? for more information, please contact kathryn struik at - - , or email at ubccaninestudy@gmail.com mailto:ubcdogstudy@gmail.com what is involved? who? families with a child aged - years with autism and their companion canine. * family canines will be restricted to companion pets with no formal therapeutic or service training. (standard obedience training is permitted) what?  a hour interview  minutes of observation of child to canine interactions  in appreciation for you time, you will receive $ where? in your home and scheduled at your convenience. want to know more? if you have any questions or if you would like to consider your family for participation in the study please contact us at: ubccaninestudy@gmail.com or dr. john-tyler binfet johntyler.binfet@ubc.ca. deadline to enroll in study: november child autism research study . .do you have a child with autism or know a family who has a child with autism and a companion canine? . .about the study we want to learn about bonding between a child with autism and his/her companion canine and identify factors that influence the quality of the bond. . help us better understand bonding in children with autism appendix h – recruitment flyer mailto:ubcdogstudy@gmail.com mailto:johntyler.binfet@ubc.ca appendix i – observational data map map of the setting-observational data code: date: location: duration: physical setting: attendees: child-canine activities/interactions: child-canine physical nearness: emotional disposition of child: comfort level of child: child openness: canine behaviour: other notable features/comments: sequential drug treatment algorithm for agitation and aggression in alzheimer’s and mixed dementia | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / corpus id: sequential drug treatment algorithm for agitation and aggression in alzheimer’s and mixed dementia @article{davies sequentialdt, title={sequential drug treatment algorithm for agitation and aggression in alzheimer’s and mixed dementia}, author={s. davies and a. burhan and d. kim and p. gerretsen and a. graff-guerrero and vincent l woo and s. kumar and s. colman and b. pollock and b. mulsant and tarek k rajji}, journal={journal of psychopharmacology (oxford, england)}, year={ }, volume={ }, pages={ - } } 	s. davies, a. burhan, + authors tarek k rajji 	published 	medicine 	journal of psychopharmacology (oxford, england) introduction: behavioural and psychological symptoms of dementia (bpsd) include agitation and aggression in people with dementia. bpsd is common on inpatient psychogeriatric units and may prevent individuals from living at home or in residential/nursing home settings. several drugs and non-pharmacological treatments have been shown to be effective in reducing behavioural and psychological symptoms of dementia. algorithmic treatment may address the challenge of synthesizing this evidence-based… expand view on sage journals.sagepub.com save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations view all figures, tables, and topics from this paper 	 table 	 figure 	 figure 	 table 	 figure view all figures & tables 	dementia 	agitation 	aripiprazole 	quetiapine 	carbamazepine 	risperidone 	prazosin 	citalopram 	memantine 	gabapentin 	dementia, vascular 	geriatric psychiatry specialty 	pharmacotherapy 	pharmacology 	cholinesterase inhibitors 	schedule (document type) 	nursing homes paper mentions news article Що варто знати про життя з деменцією obozrevatel november news article Что стоит знать о жизни с деменцией obozrevatel november citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency pharmacotherapy of behavioral and psychological symptoms of dementia: state of the art and future progress 	r. magierski, t. sobów, emilia schwertner, d. religa 	medicine 	frontiers in pharmacology 	 	 	 	view excerpt, cites methods save alert research feed new antipsychotic drugs for the treatment of agitation and psychosis in alzheimer’s disease: focus on brexpiprazole and pimavanserin 	f. caraci, mario santagati, + authors f. drago 	medicine 	f research 	 	 	pdf save alert research feed development and treatment of aggression in individuals with dementia 	meghan c. gilmore, l. stebbins, soledad argüelles-borge, b. trinidad, c. golden 	medicine 	 	 save alert research feed use of psychotropic agents to treat agitation and aggression in brazilian patients with alzheimer's disease: a naturalistic and multicenter study 	l. f. oliveira, e. camargos, m. g. novaes 	medicine 	psychiatry research 	 	 save alert research feed pharmacologic management of agitation in patients with dementia 	c. mcdermott, d. gruenewald 	medicine 	current geriatrics reports 	 	 	 save alert research feed pharmacological management of behavioral disturbances in patients with alzheimer’s disease 	t. nagata, shunichiro shinagawa, s. nakajima, y. noda, m. mimura 	medicine 	expert opinion on 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in dementia. 	g. martinon-torres, m. fioravanti, evans j grimley 	medicine 	the cochrane database of systematic reviews 	 	 	view excerpts, references methods and background save alert research feed prazosin for the treatment of behavioral symptoms in patients with alzheimer disease with agitation and aggression. 	l. wang, j. shofer, + authors e. peskind 	psychology, medicine 	the american journal of geriatric psychiatry : official journal of the american association for geriatric psychiatry 	 	 	 	view excerpt, references background save alert research feed the american psychiatric association practice guideline on the use of antipsychotics to treat agitation or psychosis in patients with dementia. 	v. reus, l. fochtmann, + authors j. yager 	medicine 	the american journal of psychiatry 	 	 	 	view excerpt save alert research feed elderly patients with dementia-related symptoms of severe agitation and aggression: consensus statement on treatment options, clinical trials methodology, and policy. 	c. salzman, d. jeste, + authors g. zubenko 	medicine 	the journal of clinical psychiatry 	 	 	 	view excerpts, references background save alert research feed memantine for agitation/aggression and psychosis in moderately severe to severe alzheimer's disease: a pooled analysis of studies. 	g. wilcock, c. ballard, j. a. cooper, h. loft 	psychology, medicine 	the journal of clinical psychiatry 	 	 	view excerpt, references background save alert research feed olanzapine treatment of psychotic and behavioral symptoms in patients with alzheimer disease in nursing care facilities: a double-blind, randomized, placebo-controlled trial. the hgeu study group. 	j. street, w. clark, + authors a. breier 	psychology, medicine 	archives of general psychiatry 	 	 	pdf 	view excerpt, references background save alert research feed a randomized placebo-controlled trial of risperidone for the treatment of aggression, agitation, and psychosis of dementia. 	h. brodaty, d. ames, + authors f. grossman 	psychology, medicine 	the journal of clinical psychiatry 	 	 	pdf 	view excerpts, references background save alert research feed use of gabapentin in the treatment of behavioural and psychological symptoms of dementia 	y. kim, k. wilkins, rajesh r tampi 	medicine 	drugs & aging 	 	 	view excerpt, references background save alert research feed safety and efficacy of electroconvulsive therapy for the treatment of agitation and aggression in patients with dementia. 	m. ujkaj, d. davidoff, s. seiner, j. ellison, d. harper, b. forester 	psychology, medicine 	the american journal of geriatric psychiatry : official journal of the american association for geriatric psychiatry 	 	 	pdf 	view excerpts, references background save alert research feed evaluation of risperidone in the treatment of behavioral and psychological symptoms and sleep disturbances associated with dementia 	j. c. durán, a. greenspan, j. diago, r. gallego, g. martínez 	medicine, psychology 	international psychogeriatrics 	 	 	view excerpts, references background save alert research feed ... ... related papers 	abstract 	figures, tables, and topics 	paper mentions 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ [pdf] assessing suicide risk in older adults. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / .npr. . . corpus id: assessing suicide risk in older adults. @article{ assessingsr, title={assessing suicide risk in older adults.}, author={}, journal={the nurse practitioner}, year={ }, volume={ }, pages={ - } } 	 	published 	medicine 	the nurse practitioner view on pubmed alliedhealth.ceconnection.com save to library create alert cite launch research feed share this paper topics from this paper 	behavior 	primary health care references showing - of references sort bymost influenced papers recency death of elderly scarborough couple suspected murder - suicide 	 depression gets physical : pain , heart , bone and beyond 	 protective factors against suicide among young-old chinese outpatients 	ying-jen chen, yun-fang tsai, s. lee, hsiu-lan lee 	medicine 	bmc public health 	 	 	 save alert research feed suicide rates are high among elderly 	z gerontol geriatr 	 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	 	pdf save alert research feed suicidal behaviour in old age - results from the ibadan study of ageing 	a. ojagbemi, b. oladeji, t. abiona, o. gureje 	medicine 	bmc psychiatry 	 	 	 save alert research feed ... ... related papers 	abstract 	topics 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue [pdf] methicillin-resistant staphylococcus aureus and animals: zoonosis or humanosis? | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /jac/dkn corpus id: methicillin-resistant staphylococcus aureus and animals: zoonosis or humanosis? @article{morgan methicillinresistantsa, title={methicillin-resistant staphylococcus aureus and animals: zoonosis or humanosis?}, author={m. morgan}, journal={the journal of antimicrobial chemotherapy}, year={ }, volume={ }, pages={ - } } 	m. morgan 	published 	medicine, biology 	the journal of antimicrobial chemotherapy methicillin-resistant staphylococcus aureus (mrsa) is increasing worldwide. occasionally, animals are colonized or infected incidentally with human strains. recently, however, new strains of mrsa emerging from within the animal kingdom, particularly in pigs, are causing human infection. mrsa has been reported in species as diverse as companion animals, horses and pigs, through to chinchillas, bats and parrots. in contrast, whereas strains of community-associated mrsa, the majority of which… expand view on pubmed academic.oup.com save to library create alert cite launch research feed share this paper citationshighly influential citations background citations results citations view all topics from this paper 	zoonoses 	chinchilla<genus> 	chiroptera 	methicillin 	family psittacidae (organism) citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency livestock-associated methicillin-resistant staphylococcus aureus in animals and humans. 	h. graveland, b. duim, e. van duijkeren, d. heederik, j. wagenaar 	biology, medicine 	international journal of medical microbiology : ijmm 	 	 save alert research feed livestock-associated staphylococcus aureus cc : animal reservoirs and human infections. 	e. verkade, j. 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research feed suspected transmission of methicillin-resistant staphylococcus aureus between domestic pets and humans in veterinary clinics and in the household. 	j. weese, h. dick, + authors d. low 	medicine 	veterinary microbiology 	 	 	pdf 	view excerpt, references background save alert research feed isolation of methicillin-resistant staphylococcus aureus from a postoperative wound infection in a horse. 	f. hartmann, s. trostle, a. klohnen 	medicine 	journal of the american veterinary medical association 	 	 	view excerpt, references background save alert research feed an outbreak of methicillin-resistant staphylococcus aureus skin infections resulting from horse to human transmission in a veterinary hospital. 	j. weese, f. caldwell, + authors d. low 	medicine 	veterinary microbiology 	 	 	view excerpt, references background save alert research feed methicillin (oxacillin)-resistant staphylococcus aureus strains isolated from major food animals and their potential transmission to humans 	j. lee 	biology, medicine 	applied and environmental microbiology 	 	 	pdf 	view excerpt, references background save alert research feed isolation of methicillin-resistant staphylococcus aureus (mrsa) from mares with metritis and its zooepidemiology 	t. anzai, m. kamada, t. kanemaru, s. sugita, a. shimizu, t. higuchi 	biology 	 	 	 save alert research feed methicillin resistant staphylococcus aureus colonization in pigs and pig farmers. 	t. khanna, r. friendship, c. dewey, j. weese 	biology, medicine 	veterinary microbiology 	 	 	view excerpt, references background save alert research feed prevalence of methicillin-resistant staphylococcus aureus among veterinarians: an international study. 	m. wulf, m. sørum, + authors a. voss 	medicine 	clinical microbiology and infection : the official publication of the european society of clinical microbiology and infectious diseases 	 	 	pdf 	view excerpt, references background save alert research feed methicillin-resistant staphylococcus aureus in veterinary doctors and students, the netherlands 	m. wulf, a. van nes, + authors a. voss 	medicine 	emerging infectious diseases 	 	 	pdf save alert research feed prevalence of methicillin-resistant staphylococcus aureus among staff and pets in a small animal referral hospital in the uk. 	a. loeffler, a. boag, + authors d. lloyd 	medicine 	the journal of antimicrobial chemotherapy 	 	 	pdf 	view excerpt, references background save alert research feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue exploring psychosocial interventions for people with dementia that enhance personhood and relate to legacy- an integrative review research article open access exploring psychosocial interventions for people with dementia that enhance personhood and relate to legacy- an integrative review bridget johnston* and melanie narayanasamy abstract background: epidemiological predictions suggest that dementia will continue to rise and that this will have social and economic ramifications. effective interventions, beyond pharmacological management are needed. psychosocial interventions have largely been investigated in relation to carers of people with dementia, or with regards to their ability to manage dementia symptoms, improve cognition, and reduce challenging behaviour. however, since dementia is a life-limiting illness and people with dementia are at risk of having their personhood compromised, psychosocial interventions should seek to enhance personhood, and offer the potential for the person to leave a legacy. methods: an integrative review was carried out to identify, assess, appraise and synthesise studies featuring interventions, which relate to both personhood and legacy. search strategies were developed in key databases: medline; psycinfo; embase; joanna briggs institute; cinahl; cochrane database of systematic reviews; assia. grey literature was also identified through free-text searches. results: thirty six articles were included in the final review, these were tabulated and were assessed based on how the intervention related to personhood and legacy. classification resulted in three themes being identified: offering aspects of legacy; acknowledging the person behind the patient; facilitating meaningful engagement. generally, personhood aspects of interventions were well reported, but further research is required to explore legacy potential of psychosocial interventions for people with dementia. conclusion: the integrative review provides an overview and exploration of an under-researched area, and provides directions for future research, which will help expand the evidence base and ultimately help improve patient care for people with dementia and their families. keywords: dementia, alzheimer’s disease, cognitive impairment, personhood, legacy, dignity, integrative review background dementia affects almost million people worldwide, manifesting as deterioration of cognitive functions, such as memory, thinking and behaviour (world health organisation/who). there are many types of dementia including vascular dementia, mild cognitive impairment and alzheimer’s disease [ , ]. dementias have been identified as progressive, life-limiting illnesses resulting in complex needs [ ], dementia can be a burden both socially, and economically, and has been regarded as a key health and public health priority [ , ]. epidemio- logical predictions suggest that dementia will continue to rise [ , , ] with estimated figures suggesting that there will be . million people living with dementia in the uk by [ ]. therefore, social and economic ramifications can be expected to persist. this means that effective interventions and treatments, grounded in the- oretical and empirical evidence bases, are required to * correspondence: bridget.johnston@nottingham.ac.uk sue ryder care centre for the study of supportive, palliative and end of life care, school of health sciences, the university of nottingham, queen’s medical centre, nottingham ng ha, england, uk © johnston and narayanasamy. open access this article is distributed under the terms of the creative commons attribution . international license (http://creativecommons.org/licenses/by/ . /), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated. johnston and narayanasamy bmc geriatrics ( ) : doi . /s - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf mailto:bridget.johnston@nottingham.ac.uk http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / manage dementias and reduce the social and economic burden for people. dementia care and services have be- come more prominent on government agendas in recent years, with greater media coverage also capturing the public’s attention and awareness [ ]. however, it is argued that care provision has failed to meet the complex needs affecting the growing propor- tion of people living with dementia [ ]. it has been pos- tulated that post-diagnostic support should be effective and holistic [ ], focusing on enabling people with de- mentia to live well with their condition [ ], and be committed to maintaining the person’s independence as much as possible, ultimately adhering to the ethos of person-centred care [ ]. the pharmacological manage- ment of dementia has often involved addressing what the literature term “challenging behaviour” [ ], with antipsychotic medication. this has had negative out- comes [ , ]. associated side effects of antipsychotic medications have been described as adverse [ ] and particular medication has been found to be ineffective for certain aspects of dementia, such as agitation [ ]. therefore, there is increasing attention being given to incorporating non-pharmacological psychosocial interven- tions in dementia care [ – ], which can improve quality of life. these include life story work, reminiscence ther- apy, music therapy, approaches to interaction and com- munication, environmental modifications and reality orientation [ , ]. the variety of psychosocial interven- tions that are available may help people with dementia to build coping strategies, reduce distress, provide interper- sonal connections and optimise remaining abilities [ ]. previous systematic reviews of psychosocial interventions for people with dementia nevertheless, previous systematic reviews on psycho- social interventions for people with dementia have neglected to give specific attention to how they may enhance personhood and/or offer the person an op- portunity to leave a legacy. the majority of reviews have focused primarily on psychosocial interventions for caregivers of those with dementia to support them in their caregiving activities and enhance their well- being, rather than looking at the person with dementia [ – ]. those which have addressed psychosocial inter- ventions for people with dementia, have focused on the agenda to ameliorate symptoms [ – ], reduce chal- lenging behaviours, (including agitation and wandering) [ , – ]; enable a reduction of medication [ ], im- prove cognitive function [ , ], or a combination of all of these [ ]. whilst important to the landscape of de- mentia research, such foci steers away from the areas this current review desires to investigate. lawrence and colleagues [ ] explored psychosocial intervention benefits for people with dementia through qualitative evidence synthesis. this included identifying interventions’ ability to facilitate meaningful engagement and contributions. however, this work was mainly ex- plored in the context of finding out how to best imple- ment interventions into practice. bates et al. [ ] systematic review on psychosocial interventions for people with mild dementia identified reality orientation, procedural memory stimulation and counselling. whilst the first two interventions were discussed in relation to their effect on mental health, the identified outcome measures for counselling were related to wellbeing. however, in addition to this only focusing on people with mild dementia, the review was conducted over a decade ago. in addition, kasl-godley and gatz’s review [ ] provided a useful overview of six different psycho- social interventions for people with dementia. the au- thors present both the theoretical background and empirical evidence of these interventions. the psycho- social interventions reviewed were psychodynamic ap- proaches including psychotherapy; reminiscence and life review. the findings acknowledge that reminiscence allows interpersonal functions to be achieved such as leaving a legacy; support groups, recognising the applic- ability of these for the person with dementia as well as the people caring for them; reality orientation, which targets confusion amongst people with dementia; mem- ory training, targeted at improving memory performance and memory functioning; and behavioural approaches, focusing on reducing what are perceived to be undesir- able behaviour. no previous systematic reviews were found particularly concerned with life review. therefore, there is still sparse recent evidence offering specific focus on the aims we wish to address. we hy- pothesise that psychosocial interventions could do much more to promote personhood as well as serve a purpose of leaving a legacy of the person as they become more cognitively impaired. we argue that this should be fo- cused on in evidence synthesis. personhood and legacy person-centred care is endorsed as part of good health care practice and encompasses a holistic and persona- lised ethos, as well as, being part of conserving the dig- nity of the person [ – ]. dignity-conserving care is highlighted as a necessary element of all health care and a responsibility for all healthcare professionals [ , ]. the notion of “personhood” is inherently part of person- centredness [ ], and is even more prominent in health- care conditions involving dementia, which can challenge person-centredness [ ]. personhood denotes the ele- ments of human beings that make them a person and is a status that is given by others, assuming recognition, re- spect and trust, [ – ]. stein-parbury et al. [ ] argue that person-centred care for people with dementia is johnston and narayanasamy bmc geriatrics ( ) : page of driven by the belief that it is possible to maintain per- sonhood regardless of cognitive impairment. further- more, personhood is made up of personal, relational, existential and moral elements [ ]. it is acknowledged that people with dementia may be at risk of having their personhood compromised [ ]. given this acknowledgment, this review will focus on identifying and appraising psychosocial interventions, which enhance personhood. moreover, although not widely acknowledged, dementia is a life-limiting illness by nature of it significantly shortening the person’s life [ ]. thus, the review also seeks to explore the extent to which interventions offer the potential to allow the person to leave a legacy. the definition of legacy is: . law. a gift of property, especially personal property, as money, by will; a bequest. . anything handed down from the past, as from an ancestor or predecessor [ ]. the second definition informs our understanding of a legacy component to psychosocial interventions. there- fore, for the purposes of this review, leaving a legacy de- notes situations in which the person with dementia can reveal and/or leave behind aspects of their personhood, for example their life story, identity, or insights into their former roles and achievements. with psychosocial inter- ventions such as life story work, this results in a tangible object, such as a book [ ] or memory box [ ]. since dementia can lead to erosion of personhood and aspects of identity being lost [ ], psychosocial interventions which serve to facilitate and preserve personhood are welcomed. we postulate that the ability to leave a legacy can support enhancement of personhood. therefore, in- terventions such as life story work involve reviewing a person’s past life and producing their individual biog- raphy [ ]. this allows the personhood of the individual to be demonstrated and can give a sense of the ‘person behind the patient,’ this may involve making links be- tween the person’s past and present [ ]. this may help health and social care staff to respond more appropri- ately and sensitively to people’s needs, because they have a better-informed insight into the person. how and why the psychosocial interventions were chosen an initial scoping stage navigating existing literature to help identify psychosocial interventions, ascertain their theoretical origins and empirical evidence-base, and assess their potential to help people with dementia symptoms retain and/or enhance their personhood, as well as, allow them to leave a legacy. the psychosocial interventions were identified through initial medline, google scholar and google searches using the mesh headings and free text terms around “psychosocial inter- vention”, “dementia”, “alzheimer’s disease”, mild cog- nitive impairment”, “person-centred” and “personhood” and appropriately combining them. including “legacy” as a term was unsuccessful in returning articles featuring such psychosocial interventions. therefore, consulting with experts (in person and via email) in the field was also necessary (in conjunction with searches) to help interventions of interest to be identified. these two methods allowed seven different “types” of psychosocial interventions to be identified all of which had clear the- oretical origins. biographical approaches included life story work, dignity therapy, reminiscence therapy and personal profile documents, which all in some form or another apply narrative theory to healthcare. each of these encourages individuals to reflect and disclose as- pects of their life experiences [ , – ]. doll therapy has its roots in a psychological approach linking to bowlby’s [ ] attachment theory and involves the person interacting with a doll or similar object [ ]. also stemming from psychological origins is person-centred counselling, influenced by humanistic psychology. this intervention sees the person have sessions with a trained therapist who uses attentive listening and empathy to help the person resolve problems [ ]. finally, creative therapies, such as art, music and drama therapy were identified, these engage the person in creative activities and are underpinned by both psychology and the psychi- atric approach of moral treatment [ ]. these seven interventions were then considered more critically by two authors (bj and mn) based on the extent to which they related to both personhood and legacy in the context of the person having a dementia condition. this was undertaken by further searching the theoretical and empirical evidence around them. the decision was made to discount person-centred counselling, since the legacy potential could not clearly be established. therefore, the search strategy was developed around the six remaining psy- chosocial interventions. methods aims and objectives the integrative review identifies, appraises, selects and synthesises existing research on psychosocial interven- tions for people diagnosed with dementia. specifically, it seeks to address the following questions: � what is the evidence for effective psychosocial interventions used for people with dementia, which enhance their personhood and offers the potential for them to leave a legacy? � what recommendations can be made for clinical practice? johnston and narayanasamy bmc geriatrics ( ) : page of furthermore, the review was guided by the following aims: . to identify, select, appraise and synthesise available evidence regarding psychosocial interventions for people with dementia, which enhance personhood and allow the person to leave a legacy. . to compare and contrast the different psychosocial interventions based on their ability to enhance personhood and allow the person to leave a legacy. . to make health and social care recommendations regarding psychosocial interventions relating to legacy and enhancement of personhood for people with dementia. . to outline future research avenues to expand the evidence base regarding psychosocial interventions relating to legacy, which enhance personhood for people with dementia. ethics since this was a literature review no ethical permissions or informed consent were needed. any supporting data related to the review, not in the article can be obtained from the corresponding author. search of the literature dementia symptoms were taken to include the different types of dementia conditions identified by uk charity alzheimer’s society, such as alzheimer’s disease, vascu- lar dementia, dementia with lewy bodies, and mild cognitive impairment. in the identification stage, psycho- social interventions were chosen based on their potential to enhance personhood of the individual with the condi- tion and allow them to leave a legacy. the initial scoping stage was pivotal to allow a search strategy to be developed, which was modified appropriately for the key electronic databases. please see table for the search strategy developed for ovid medline. the databases consulted for this integra- tive review were: ovid medline; ovid psycinfo; ovid embase; ovid joanna briggs institute; cinahl; cochrane database of systematic reviews; and pro- quest assia. searches were carried out between feb- ruary and march using a combination of medical subject headings (mesh)/ emtree key words and free text terms. free text terms were largely set to be identified within the whole docu- ment, but were refined for some databases to be limited to title and abstract, if more appropriate. figure displays a “preferred reporting items for systematic reviews and meta-analyse” (prisma) flow diagram which captures the phases of the integrative review undertaken to reach the final num- ber of included articles. guidance for producing the prisma diagram were gained from the prisma website and divide the process into four steps: “identification”, “screening”, “eligibility” and “included”. search outcomes after search strategies were performed, articles were identified and retrieved. these underwent initial screening by one author (mn), based on title and ab- stract. this resulted in articles being excluded for not sufficiently focusing on psychosocial interventions in dementia. articles were exported from host websites of selected databases to endnote × reference manager. table medline search strategy number search terms . psychosocial intervention$.mp. . psychosocial intervention$.mp. . or . non pharmacological intervention$.mp. . life stor$.mp. . story telling.mp. . storytelling.mp. . oral histor$.mp. . biograph$.mp. . exp personal narratives/ . narrative therapy/ . personhood/ . dignity therap$.mp. . reminisc$ therap$.mp. . doll therap$.mp. . play therap$.mp. . play therapy/ . exp animal assisted therapy/ . pet therap$.mp. . writing therap$.mp. . ((poetry or poem$) adj therap$).mp. . person centred counsel$.mp. . rogerian.mp. . or or or or or or or or or or or or or or or or or or or or or or . exp dementia/ . exp alzheimer disease/ . mild cognitive impairment/ . cognitiv$ impair$.mp. . dementia.mp. . alzheimer$.mp. . or or or or or . and johnston and narayanasamy bmc geriatrics ( ) : page of this allowed a total of duplicate articles to be iden- tified and removed. this then led to the next stage of assessing eligibility, where two authors (bj and mn) assessed the remaining articles based on title and ab- stract, against inclusion criteria (please see table ). this helped exclude a further articles. full texts were re- trieved for these remaining articles, which were then assessed against the inclusion criteria. two articles were excluded through this assessment, which led to full text articles being included in the final review. in addition to empirical and theoretical research studies, the grey literature was also consulted for relevant papers. two authors (bj and mn) used google search engine searches to identify and assess the grey literature, against the inclusion criteria, which led to sources of grey litera- ture being included in the final review. therefore, for the final review articles/reports were included. methodological and theoretical rigour of included articles sources of information were kept broadly open to allow thorough exploration of the full evidence base regard- ing our selected psychosocial interventions. the full spectrum of evidence was accepted, also, because per- sonhood and legacy aspects have not been the foci of previous research regarding psychosocial interventions and dementia. however, some limits were placed to focus on databases renowned for returning results rele- vant to nursing, health and social care-related disci- plines. this approach meant that a methodological assessment of articles was not included, since the na- ture of evidence pertinent to the review enquiry was found to be heterogeneous, with varied empirical and theoretical research identified. nevertheless, as identi- fied in the initial scoping stage, the theoretical basis of all included interventions was ascertained. fig. prisma flow diagram johnston and narayanasamy bmc geriatrics ( ) : page of classifying previous research the full text included articles were then read and ana- lysed for themes which summarised the consistent ideas and patterns present in the data through the use of key words. analysis was directed to focus on anything rele- vant to addressing the first research question and there- fore centred on legacy and personhood. this has resulted in the themes relating significantly to aspects of legacy and personhood. analysing the literature in this way enables conceptual constructs to be classified under specific themes, and helps to generate new knowledge. as a result, this review fulfils the aims of an integrative review [ ]. classifying literature evidence under themes also allows gaps and shortcomings to be apparent, thus helping to inform a future research agenda [ ]. data synthesis through the process of classifying previous research, data from the articles were placed appropriately under the relevant developed theme. by presenting the data under themes, this enabled the data to be understood with regards to how the interventions offered the person with dementia the opportunity to leave a legacy and also how the interventions enhanced personhood. results the themes generated from the included articles are captured in fig. and are indicated for each study in table where relevant. these themes enable assessment of the interventions in terms of their ability to enhance personhood and offer the potential for legacy (a key aim of this review as indicated in the methods section). offering aspects of legacy captures examples where the psychosocial interventions within the included articles allow the person with dementia to leave a legacy through tangible or non-tangible means or the potential to do so. it was not always an explicit aim of the article to show or acknowledge how the intervention linked to legacy. therefore, offering aspects of legacy is partly based on our (bj and mn) recognition of the intervention’s legacy potential. acknowledging the person behind the patient denotes ways in which the interventions enable aspects of the person to come to the fore beyond their illness. this includes their past and present roles and elements table inclusion criteria inclusion criteria rationale literature published since initial scoping indicated that some interventions had relevant literature from the s. accepting literature from onwards ensures that key empirical and theoretical evidence on relevant interventions are not missed. intervention(s) must be psychosocial in nature i.e., as according to the oxford english dictionary definition of psychosocial: “of or relating to the interrelation of social factors and individual thought and behaviour” (oed, ). the review is focused on psychosocial intervention(s) for people with dementia intervention(s) must be non-pharmacological the review is not concerned with drug-related interventions and therefore focuses on non-pharmacological intervention(s) only intervention(s) must have the potential to enhance personhood and enable the person to leave a legacy personhood and legacy factors are major foci of this review. intervention(s) must be designed for human adults with dementia the review is concerned with relevant psychosocial intervention(s) that are used on adults with dementia. for the purposes of this review, dementia is understood in accordance with the definition present on alzheimer’s society’s ( ) website: “a set of symptoms that may include memory loss and difficulties with thinking, problem-solving or language”. describes the results of empirical and theoretical research studies this review is concerned with identifying, appraising, and synthesising best available evidence. as such empirical studies are deemed the strongest source of evidence-base. theoretical studies are also included if evidence was deemed relevant. consults evidence from grey literature initial scoping suggested that some psychosocial interventions used for people with dementia have not have been theoretically and/or empirically investigated. therefore, grey literature provides the best insight into these particular interventions. for the purposes of this review, grey literature is understood to be literature that has not formally been published in sources such as books or journal articles (as advised in the cochrane handbook, ) english language budgetary constraints have meant that only english texts can be reviewed, to save on translation costs an exclusively western focus the findings of this review will contribute to recommendations for health and social care practice and future research avenues. these will be made with western settings in mind. johnston and narayanasamy bmc geriatrics ( ) : page of of identity. this was seen to contribute to insights into both legacy and personhood. finally facilitating mean- ingful engagement focuses on the person’s response to the intervention, with regards to participation, enjoy- ment and enhancement of personhood. offering aspects of legacy the identified psychosocial interventions that directly allowed people with dementia to leave a legacy were life story work and reminiscence therapy. in most cases, this materialised as a tangible document, such as, a life story book, which contained photographs, text, postcards, letters and memorabilia [ ]. moreover, there were also variations such as memory boxes [ ], video biographies [ ], multimedia biograph- ies and cd recordings [ – ]. memory boxes allowed meaningful objects to be contained beyond photographs, for example a smoking pipe [ ]. hagens et al. [ ] study involved reminiscence sessions with five older adults who had cognitive impairment. participants’ words and phrases were incorporated into a personal poem. in addition, remembering boxes were also pro- duced to include meaningful objects and writings. the poems and remembering boxes came to be person- centred communication tools since they helped staff to learn more about residents, serving to be particularly useful when the latter were sleepless or agitated. the poems were framed and were placed in the residents’ rooms along with the remembering boxes. both tangible objects were found to provide staff with insights into the residents and encouraged staff to take further interest in the resident. moreover, in contrast with books and boxes, some tangible objects did not always convey an obvious biographical narrative. for example, interven- tions such as doll therapy [ , ], animal therapy [ ], place therapy [ ] and object-stimulated reminiscence therapy [ – ], served to enable reminiscence of earlier life experiences, as opposed to conveying experiences immediately, as with a book. the legacy component could be inferred in the fact that the resulting reminis- cing allowed insight into people’s identity and selves, which had been unknown previously to family members and healthcare professionals [ , , , , ]. in some cases, knowledge of the person’s life story gave care- givers guidance to implement person-centred care and helped them to understand reasons behind people’s behaviour and learn what was important to them in the present [ , ]. furthermore, the grey literature provided insight into how life story work has been adapted for different healthcare settings. this has led to personalised profile form versions such as “this is me” [ , , ] and “getting to know me” [ – ]. these personalised forms allow people with dementia (often on admission to hos- pital settings) to provide a snapshot of themselves by inserting brief information in response to questions on the forms. an rcn resource [ ] highlighted “this is me” as a version of the life story books that usually ma- terialise from life reviews, thus making a link to an established, evidence-based body of work. this rcn resource suggests that personalised profile forms may be more amenable to hospital settings compared to life story books, due to their brief form and the fact that they are quick to fill in. however, there was also recogni- tion that such forms should be appropriate for use in any setting where professional care is being received [ ]. the grey literature confirmed that such persona- lised profile forms were present in patient health re- cords, which highlights that they may be applicable to clinical practice. [ ]. moreover, one source recom- mended personalised profile forms to be used in practice in all settings catering for people with dementia, as a way of promoting dignity [ ]. the legacy component for such forms can be seen as preserving the personal preferences of patients as individuals and letting these be known to people caring for them. where there was a legacy component inherent in the intervention, this was referred to in some of the studies [ , , , – ] and the intervention was com- mended for allowing the person’s life story to be in a form that could endure, be revisited, prevail and be accessed by future generations within and out of the family. this was largely the case for life story work inter- ventions, where in most cases, a life story book, in some form or another, is produced. cohen’s [ ] literature re- view described life story products, such as video biog- raphies, as an exit gift. savundranayagam et al. [ ] empirically explored a life story initiative known as storycorps, which aims to preserve a record of the life stories of people with memory loss by means of broad- cast cds. some family members declared that they would save listening to the cd for when their loved one died. moreover, family members often saw this strategy fig. themes generated from the included articles johnston and narayanasamy bmc geriatrics ( ) : page of table overview of included articles reference psychosocial intervention article type/brief summary generated theme . benbow b. ( ) design features for resident engagement and meaningful activity, canadian nursing home, ( ): – [ ] - reminiscence; design features for example building lifestyle stations which will stimulate particular memories and influence increased engagement in activities - theoretical - literature review of empirical and practice-based recommendations on designing residential environments, e.g., residential homes, that will facilitate meaningful activities. - de-emphasising dementia illness and deterring the view of people as passive recipients of care acknowledging the person behind the patient offering aspects of legacy facilitating meaningful engagement . buse c. and twigg j. ( ) women with dementia and their handbags: negotiating identity, privacy and “home” through material culture, journal of aging studies, , – [ ] - reminiscence (using clothing and handbags to stimulate memories and access to personal histories). - empirical - part of esrc funded uk study on dementia and dress. - used observations and qualitative interviews. “wardrobe interviews” were also conducted- interviewing people next to their wardrobes. - sample case studies with dementia ( men and women). -female participants of different socio-economic backgrounds- lived in their own homes; in care homes. - used reminiscence groups,based on idea that handbags are linked to memories and identities, reacquainting women with happier times. acknowledging the person behind the patient offering aspects of legacy . chaudhury h. ( ) quality of life and place-therapy, journal of housing for the elderlyjournal of housing for the elderly, ( - _: – [ ] place-therapy; reminiscence - empirical - study exploring reminiscence of personally meaningful places from the past for nursing residents cognitively impaired and non-cognitively impaired). - residents from four different nursing homes; interviews with residents with dementia, family members of residents with dementia; and residents with no cognitive impairments - reminiscing encouraged by the narrative of lived experiences elicited from places. - article describes place-therapy as a potential therapeutic intervention, but it would need to be implemented as an ongoing activity to allow better evaluation. acknowledging the person behind the patient offering aspects of legacy facilitating meaningful engagement . chung jcc. ( ) an intergenerational reminiscence programme for older adults with early dementia and youth volunteers: values and challenges, scandinavian journal of caring sciences, , – [ ] reminiscence therapy; life story work - empirical pre and post one group design was used; older participants with early dementia and youth volunteers from hong kong - older participants were assigned to youth participants and all took part in a -session reminiscence programme. - youth participants were facilitators who also helped the older participants to create a personal life story book - findings revealed that this intergenerational reminiscence programme had mutual benefits for both participants. offering aspects of legacy johnston and narayanasamy bmc geriatrics ( ) : page of table overview of included articles (continued) - findings were based mostly on feedback from youth participants around their opinions of the reminiscence programme. - more detailed analysis and discussion around gains for the older participants would be helpful . cohen gd. ( ) familiar activities, videos can help patients cope with memory loss, geriatrics, ( ): - [ ] life story work; video biographies - theoretical - literature review looking at nonmedical interventions that can bring about patient satisfaction. - video biographies are explored as a way of conveying the person’s life history to families, friends and volunteers and encourage these latter groups to visit. offering aspects of legacy facilitating meaningful engagement . cooney a., hunter a., murphy k., et al. ( ) “seeing me through my memories”: a grounded theory study on using reminiscence with people with dementia living in long-term care, journal of clinical nursing, , – [ ] reminiscence -empirical - grounded theory using in-depth interviews with residents with dementia (n = ), relatives (n = ), healthcare assistants (n = ), nurses (n = ), and nurse managers (n = )- exploring their perceptions about reminiscence. - study participants were recruited from long-term care facilities where reminiscence was being used. - the theory generated a theory “seeing me through my memories”, which highlights the way in which reminiscence and engaging with the patient allowed the staff to see the person and enhance personhood. offering aspects of legacy facilitating meaningful engagement . crete- nishihata m., baecker rm., massimi m., et al. ( ) reconstructing the part: personal memory technologies are not just personal and not just for memory, human-computer interaction, ( – ): – [ ] life story work- using personal memory technologies - empirical - study of participants with alzheimer’s disease (ad) or mild cognitive impairment (mci) and family members - dvd-based multimedia biographies (mbs) capturing events, people, and places from participants’ past. - mb content included photographs, home movies, documents, music and narration. participants and family members contributed to content acknowledging the person behind the patient offering aspects of legacy facilitating meaningful engagement . damianakis t., crete-nishihata mc., smith kl., et al. ( ) the psychosocial impacts of multimedia biographies on persons with cognitive impairments, the gerontologist, ( ): – [ ] life story work - empirical - multimedia biographers and social workers conducted interviews with family members of people with alzheimer’s disease (ad) and mild cognitive impairment (mci) to gain insight into patients’ life histories and build multimedia biographies (mbs). - also collected were archival materials to contribute to life histories. offering aspects of legacy facilitating meaningful engagement acknowledging the person behind the patient . dempsey l., murphy k., cooney a., et al. ( ) reminiscence in dementia: a concept analysis, dementia, ( ): – [ ] reminiscence therapy - theoretical - concept analysis; literature review - useful to define “reminiscence” so that an operational definition can be generated and to allow it to be developed in dementia care. acknowledging the person behind the patient facilitating meaningful engagement johnston and narayanasamy bmc geriatrics ( ) : page of table overview of included articles (continued) - beyond the concept analysis, the article offers some exploration of the use of reminiscence as a therapeutic intervention for people with dementia. . fels di. and astell aj. ( ) storytelling as a model of conversation for people with dementia and caregivers, american journal of alzheimer’s disease & other dementias, ( ): – [ ] storytelling - empirical - study applies a storytelling conventional model to verbal reminiscences of older people with dementia. - older adults with dementia were recruited from a day care centre and social work department care home. - used photographs of different annual events (christmas, easter, burns night, new year, birthdays, holidays). participants were shown a series of photographs and were encouraged to disclose memories of each event. the interviewer was able to guide participants where necessary. offering aspects of legacy . hagens c., beaman a., and ryan eb. ( ) reminiscing, poetry writing, and remembering boxes, activities, adaptation & aging, ( – ): – [ ] reminiscence; poetry writing -empirical - reminiscence sessions were carried out with cognitively- impaired older adults. their words and phrases were structured into poetry to convey their “essence”. - information elicited from these session was used to build personal remembering boxes, containing meaningful objects and writings, - participants were nursing home residents ( man; women) who had some level of cognitive impairment. - group sessions were conducted, lasting for about an hour, and tasking place is “casual” settings. these preceded or proceeded interviews, with the aim to further explore meaningful memories. offering aspects of legacy acknowledging the person behind the patient facilitating meaningful engagement . gibb h., morris ct., and gleisberg j. ( ) a therapeutic programme for people with dementia, international journal of nursing practice, , – [ ] reminiscence -empirical - reports on a trial programme incorporating tai chi and subsequent reminiscence sessions used on people with moderately advanced dementia. - analysis focuses on the stories told by the people and aims to understand the purpose of storytelliing for them. - participants were older residents of a nursing home. % had multi-infarct dementia; % had alzheimer’s disease. - research sessions were conducted twice a week over weeks. offering aspects of legacy acknowledging the person behind the patient . heathcote j. ( ) paws for thought: involving animals in care, nursing & residential care, ( ): – [ ] animal assisted intervention/ animal assisted therapy/ pet therapy - theoretical - literature review around the benefits of how animals can impact on residents in nursing homes and how pets can be used in therapy. - cautions/ negative aspects are also explored offering aspects of legacy acknowledging the person behind the patient facilitating meaningful engagement johnston and narayanasamy bmc geriatrics ( ) : page of table overview of included articles (continued) - article provides some guidance for staff who may want to bring a resident animal. . heathcote j. and clare m. ( ) doll therapy: therapeutic or childish and inappropriate, nursing & residential care, ( ): – [ ] doll therapy - theoretical - literature review exploring the benefits and controversial aspects of doll therapy on people with dementia. - ethical issues are also addressed, e.g., whether it is deceitful, patronising, dignity-reducing to have dolls and allow people to believe they are real babies. offering aspects of legacy acknowledging the person behind the patient facilitating meaningful engagement . higgins p. ( ) using dolls to enhance the wellbeing of people with dementia in residential care, nursing times, ( ): – [ ] doll therapy - theoretical - literature review on how dolls can enhance wellbeing of people with dementia in residential care. offering aspects of legacy acknowledging the person behind the patient facilitating meaningful engagement . holm a., lepp m. and ringsberg kc. ( ) dementia: involving patients in storytelling- a caring intervention. a pilot study, journal of clinical nursing, , – [ ] storytelling - empirical - pilot study exploring the therapeutic role of storytelling in patients with dementia. - participants were patients ( women, man), who had intermediate and severe dementia. three female paid caregivers also participated. - participants met on occasions within months. each meeting involved participants gathering in a circle and being told a story by the leader. offering aspects of legacy facilitating meaningful engagement . ingersoll-dayton b., spencer b., kwak m., scherrer k., allen rs., and campbell r. ( ) the couples life story approach: a dyadic intervention for dementia, journal of gerontological social work, : , – [ ] - couples life story approach (adapted from legacy therapy); life story work; reminiscence - usually involves one-hour sessions over five weeks - empirical - couples (of which one partner has dementia), reminisce about their relationship story using photographs and mementoes (postcards, newspaper clippings, wedding vows) and develop a book - intervention engages both care recipient and caregiver, and endeavours to focus on meaningful engagement and shared communication - final study sample couples (n = ); study conducted in couples’ homes; family member home; care retirement community acknowledging the person behind the patient offering aspects of legacy facilitating meaningful engagement . kasl-godley j. and gatz m. ( ) psychosocial interventions for individuals with dementia: an integration of theory, therapy, and a clinical understanding of dementia [ ] various including focus on reminiscence and life review - theoretical - integrative review on six psychosocial interventions for individuals with dementia. - interventions described in terms of theoretical underpinnings, techniques and relatable empirical evidence. offering aspects of legacy acknowledging the person behind the patient . mcdermott o., orrell m. and ridder hm. ( ) the importance of music for people with dementia: the perspectives of people with dementia, family carers, staff and music therapists, aging & mental health, ( ): – [ ] music-based interventions - empirical - qualitative study exploring the importance and meaning of musical experiences for people with dementia - focus groups and interviews conducted with care home residents with dementia and their families; day hospital clients with facilitating meaningful engagement offering aspects of legacy acknowledging the person behind the patient johnston and narayanasamy bmc geriatrics ( ) : page of table overview of included articles (continued) dementia; care home staff; music therapists - residents from nhs care homes (home a- n = ; home b- n = ); staff were those who provide day-to-day care to residents; family members were those who had significant contact with residents . mckeown j., clarke a., ingleton c., ryan t. and repper j. ( ) the use of life story work with people with dementia to enhance person-centred care, international journal of older people nursing, , – [ ] life story work - empirical - multiple case study design used, including interviews, observations and conversations with older people with dementia (n = ), family carers and care staff within an nhs health and social care trust. - focuses on how life story work enhances person-centred care for individuals with dementia offering aspects of legacy acknowledging the person behind the patient facilitating meaningful engagement . mckeown j., clarke a. and repper j. ( ) life story work in health and social care: systematic literature review, journal of advanced nursing, ( ): – [ ] life story work (lsw) - theoretical - systematic literature review on life story work in health and social care practice - staff views frequently explored, but sparse evidence around patient and carer perceptions. offering aspects of legacy facilitating meaningful engagement acknowledging the person behind the patient . mckeown j.,ryan t., ingleton c., clarke a. ( ) “you have to be mindful of whose story it is”: the challenges of undertaking life story work with people with dementia and their family carers, dementia, ( ): – [ ] life story work - empirical - case study analysis to gain insight into experiences of using life story work in one nhs mental health and social care trust (across four different nhs care settings). - participants were people with dementia (n = ), family carers and care staff - data collection comprised of semi-structured interviews, observations, conversations and field notes offering aspects of legacy acknowledging the person behind the patient . moos i. and björn a. ( ) use of life story in the institutional care of people with dementia: a review of intervention studies, ageing and society, , – (come back to) [ ] life story; reminiscence - theoretical - review of intervention studies that endeavoured to explore the benefits of life story for nursing home residents with dementia (in particular looking at links to residents’ sense of identity). - papers published between and - interventions were divided into groups: interventions to raise self-esteem and self-integration; interventions to change life quality; interventions to change behaviour acknowledging the person behind the patient facilitating meaningful engagement offering aspects of legacy . pringle a. and somerville s. ( ) computer-assisted reminiscence therapy, mental health practice, ( ): – [ ] reminiscence therapy (computer-assisted) - empirical - describes the early development stages of a pilot study looking at using new technology in reminiscence therapy in for people with dementia in inpatient settings (n = ). - this involves a tablet device containing a reminiscence file for each patient. the files may encompass photographs, films, song playlists and music. offering aspects of legacy johnston and narayanasamy bmc geriatrics ( ) : page of table overview of included articles (continued) - three sessions were carried out, led by a member of staff. the st session used structured conversation, nd used a memory book; rd used the computer tablet only . russell c. and timmons s. ( ) life story work and nursing home residents with dementia, nursing older people, ( ): – [ ] life story work - empirical - using narrative research methodology, the stories of nursing home residents with dementia were analytically reconstructed. - participants were over the age of years and had mild to moderate symptoms of dementia. - unstructured interviews were used, which were recorded and transcribed verbatim with ideas also written down. offering aspects of legacy acknowledging the person behind the patient . savundranayagam my., dilley lj. and basting a. ( ) storycorps’ memory loss initiative: enhancing personhood for storytellers with memory loss, dementia, ( ): – [ ] life story work - empirical - study around the american storycorps’ memory loss initiative for collecting oral histories of people with memory loss. - each conversation told through storycorps is recorded and produced on a broadcast-quality cd. this is archived at the library of congress, following participants’ permission. - investigates to interview experience (specifically follow-up interviews) of people with memory loss (n = ) and their family members (n = ) in chicago and new york, america. facilitating meaningful engagement acknowledging the person behind the patient offering aspects of legacy . scherrer ks., ingersoll-dayton b. and spencer b. ( ) constructing couples’ stories: narrative practice insights from a dyadic dementia intervention, clinical social work journal, , – [ ] couples life story approach - empirical - exploring the effects of a week structured dyadic intervention to provide couples with a chance for meaningful engagement, to explore their strengths, to enhance communication and to encourage them to reflect on their shared experiences. - sample was couples ( individuals), one of whom had memory loss. acknowledging the person behind the patient offering aspects of legacy . subramaniam p., woods b. and whitaker c. ( ) life review and life story books for people with mild to moderate dementia: a randomised controlled trial, aging & mental health, ( ): – [ ] life review - empirical - evaluation of the effect of different pathways for producing a life story book (lsb) for people with dementia. - participants were people with dementia in care homes - rct with two intervention arms: ) individual life review sessions and co-creating a lsb; ) a personal lsb created by their relatives as a “gift”. - results suggested no significant difference in quality of life between the two groups six weeks after the lsb had been received (f( , ) = . , p = . ). but quality of life had improved for both groups. offering aspects of legacy acknowledging the person behind the patient johnston and narayanasamy bmc geriatrics ( ) : page of table overview of included articles (continued) - there was significant between- group difference immediately after the life review sessions had been carried out but before the lsbs were received (f( , ) = . , p = . ). - regardless of pathway, production of lsbs led to improved quality of relationships (rated by relatives) (f( , ) = . , p < . ). . thompson r. ( ) using life story work to enhance care, nursing older people, ( ): - [ ] life story work - theoretical - literature review on the notion of life story work and tools used to elicit information about the person. - benefits for people with dementia, family members and staff are highlighted. - barriers are also acknowledged, and include lack of time, support, resources, skills and confidence. offering aspects of legacy acknowledging the person behind the patient . williams br., blizard ti., goode ps., et al. ( ) exploring the affective dimension of the life review process: facilitators’ interactional strategies for fostering personhood and social value among older adults with early dementia, dementia, ( ): – [ ] life review - empirical - study based on individual one-on-one conversational sessions with community-dwelling military veterans (n = ) with mild cognitive impairment (mci) and early dementia. - a life review workbook was used to support the conversations, which had been produced by the hospice foundation of america. - participants had two to four life review sessions, which were recorded. informal caregivers could be present. - each session was a maximum of h. - interviews were conducted in a private office in the veterans’ “medical center” (n = ), or in the veterans’ place of residence (n = ) offering aspects of legacy acknowledging the person behind the patient facilitating meaningful engagement . alzheimer scotland- action on dementia ( ) annual review – , the scottish government [ ] personalised profile forms- “getting to know me” - grey literature - discusses the development and use of the “getting to know me” form by nhs lanarkshire - insight from a dementia nurse consultant working for nhs lanarkshire, to explain how it is used in practice offering aspects of legacy acknowledging the person behind the patient . alzheimer scotland- action on dementia ( ) dementia in scotland, winter / , issue [ ] personalised profile forms- “getting to know me” - grey literature - discusses the use of personalised profile forms within nhs lanarkshire- “getting to know me”. - used by band nurses (charge nurses and deputy charge nurses) to look at their strategies for improving the experiences of people with dementia and their families in hospitals. - explores how using “getting to know me” in practice has informed nurses’ care and allowed them to use the information to use strategies for dealing with difficult situation offering aspects of legacy acknowledging the person behind the patient johnston and narayanasamy bmc geriatrics ( ) : page of as a way of allowing the person with memory loss to be heard, which may or may not routinely happen in care or in wider society. ingersoll-dayton et al. [ ] explored couples’ life stories as adapted from legacy therapy. one partner in each couple had dementia, and were encour- aged to reminisce about their relationship using photo- graphs and mementoes. as a collaborative process, the intervention was found to engage both partners and is designed to focus on meaningful engagement and shared communication. however, the research sample used for this study is somewhat limited, since it consisted of white, heterosexual couples who lived in their homes. likewise, cohen’s [ ] ( ) literature review explor- ing non-medical interventions to bring about patient satisfaction, suggested that life story work and video biographies could be an intergenerational project, which involves younger family members. this positive aspect of life story work was also recognised in another study [ ]. cohen [ ] provides a strong rationale advo- cating for the use of video biographies, describing them as therapeutic and restorative. they suggest that they can assist family and friends with sharing time with the person with dementia. this is particularly relevant when dementia conditions, such as alzheimer’s disease can be dehumanising, and prevents the person from re- lating their personal histories. this would suggest that video biographies allow a legacy to be passed on while the person with dementia is still alive. nevertheless, table overview of included articles (continued) . health improvement scotland ( ) announced inspection report- care for older people in acute hospitals- hairmyres hospital, nhs lanarkshire, scotland: health improvement scotland [ ] personalised profile forms- “getting to know me” - grey literature - reports on an announced inspection looking at the care of older people in acute hospitals - highlights that nhs lanarkshire is piloting (at the time of publishing) the “getting to know me” document. offering aspects of legacy acknowledging the person behind the patient . kane, m. ( ) my life until the end- dying well with dementia, alzheimer’s society [ ] personalised profile forms – “this is me” - grey literature - report exploring seven key issues that need to be taken account for people with dementia at end of life: public awareness; care planning and proxy decision making; dignity; pain; withholding and withdrawing treatment; emotional and spiritual concerns; place of care and death - the report is informed by semi-structured interviews with former carers (n = ), current carers (n = ), and people with dementia (n = ). - further insight was provided by alzheimer’s society colleagues working with people with dementia. acknowledging the person behind the patient . robinson p. and tyndale-biscoe j. ( ) what makes a top hospital? dementia care- report , warwickshire: caspe healthcare knowledge systems (chks) [ ] personalised profile forms- “this is me” - grey literature - report outlining recommendations for hospitals to enable them to deliver better care for people with dementia - endorses the use of “this is me” document, which was developed by the northumberland acute care and dementia group with support from the royal college of nursing. - although initially developed for people with dementia going into hospital, it is appropriate for use in any setting where professional care is being received. acknowledging the person behind the patient facilitating meaningful engagement . royal college of nursing (rcn) ( ) dementia- commitment to the care of people with dementia in hospital settings, london: rcn [ ] personalised profile forms- “this is me” - grey literature - resource providing guidance to people working in hospital settings to help them to deliver high quality care for people with dementia and their carers. - includes brief discussion of “this is me”, and considers it a version of life story work. offering aspects of legacy acknowledging the person behind the patient johnston and narayanasamy bmc geriatrics ( ) : page of cohen’s review only looks at one study around video biographies. in mckeown et al. [ ] life story work was not framed as a “couple” intervention, it was still carried out as a collaborative process, but prioritised the person with de- mentia’s choices as to what went into the life story book. on the other hand, this was not always the case, since one study [ ] found that the wife of one man with de- mentia chose not to include particular photographs in her husband’s life story book. this raises the question of whether it is truly the person with dementia’s story that is being presented and preserved, which then has impli- cations for the legacy component of this intervention. moreover, chung [ ] looked at an intergenerational reminiscence programme between older participants with dementia, and youth volunteers. the programme involved reminiscence sessions and the production of life story book. although, findings suggested that there were mutual benefits for both participants, this was based mostly on feedback from youth participants rather than the older people. therefore, more detailed analysis around the advantages for older participants would be helpful in order to ascertain how useful and/or relevant legacy aspects are for the person with dementia. in addition, quality of life story books were not always of a high standard, as one study [ ] reported that er- rors were present including typing, spelling and gram- matical mistakes, as well as pictures not being secured adequately. with couple life story work, the resulting life story book means that couples have something to review and revisit and many couples spoke about intentions to share the book with others [ ]. mckeown et al. [ ] also found that the revelations of life histories that came from life story work intervention allowed the person be- hind the patient to emerge, and enabled staff to learn new things, which helped them to understand the per- son better. cohen’s [ ] literature review suggests that such enhanced knowledge acquired by staff can increase their sensitivity. however, despite being perceived as a positive inter- vention, there were practical difficulties, such as, strug- gles to find pictures for the book [ ]. moreover, for some, it was a bittersweet experience to revisit the past and was seen to be preferable earlier on in the illness trajectory. further criticism for this intervention was found in an integrative review [ ] which suggested that although life story work and reminiscence can allow a legacy to be left and fulfil interpersonal functions [ – ], for individuals who have difficulties in pro- cessing past experiences, leaving a legacy may prove problematic. another, systematic review [ ] focusing on life story work suggested that patient and carer perceptions were less likely to be explored compared to staff. further criticism suggests that life story work was time consuming from staff perspectives [ , ]. nevertheless, life story books were seen to have po- tential to contribute to regular assessment documen- tation to enable new information about the person to be conveyed [ ]. this suggests that the legacy com- ponent of life story work is not just relevant after death, but also during the person with dementia’s life, with life story books offering a way to enhance person-centred care, and preserve personhood before illness deterioration. in addition, staff value life story work as a way of allowing patients to be seen as people with histories, and endorse this intervention for helping them to gain insight into present behav- iours by learning about the person’s past [ ]. other variations of the life story book exist, such as personal computer files [ ] and cds [ ]. these digital versions allowed more sophisticated content, such as music playlists, and allowed a more seamless process [ ]. there were also other objects beyond books which were recognised as having legacy components. buse and twigg [ ] discussed the use of clothing items, specific- ally, handbags, in triggering reminiscence of personal memories. this was motivated by the notion that hand- bags are linked to memories and identities that enable females to reacquaint them with positive periods of their life, such as, motherhood. aspects of legacy were present since handbags were described as biographical objects, serving to facilitate storytelling and disclosures of per- sonal histories. handbags were identified as prevailing objects, which are retained when illness disrupts a per- son’s biography. [ ] specifically, while some husbands of women with dementia could not understand why their wives wanted to keep their collections of handbags, which were seemingly functionless in the current con- text, other relatives could see how handbags allowed the retention of the person who was otherwise lost through illness or death, emphasising personhood. the production of dvd-based multimedia biograph- ies were also explored at in two related studies [ , ], which were based on empirical work with participants with alzheimer’s disease. production of multimedia biographies were a collaborative process between people with dementia and their families and content included photographs, home movies, documents, music and nar- ration. as well as, providing a tangible product that allowed personal experiences and stories to be recorded and kept, it also helped family members to conserve their loved one’s personhood, providing a means to con- vey the person’s story to future generations. family members credited the multimedia biographies with fa- cilitating intergenerational communication and enabling a family legacy to be left; specifically, patient participants valued being able to leave a legacy for their loved ones johnston and narayanasamy bmc geriatrics ( ) : page of after they had died [ ]. however, the authors [ ] also note that it should be established whether or not the person with dementia wants to share the multimedia biographies, or whether they would prefer to view them alone. in all circumstances, the person’s wishes regarding this should be adhered to. nevertheless, the authors do, however, highlight that producing multimedia biographies can be complex because of the complicated technology and time required. conversely, some studies did not explicitly discuss the interventions as relating to legacy. for instance, benbow [ ] discussed a literature review focusing on four stud- ies, which looked at designing residential environments to facilitate meaningful activities. the article mainly discussed the aims and objectives to be achieved by incorporating designs such as “lifestyle stations” into the residence of people with dementia. this included the intention to allow people with dementia to access mem- ories of previous hobbies and/or working life, resulting in the production of vignettes that enable residents to recognise particular activities and practice specific skills as derived from their life stories. the review identified studies which showed that lifestyle stations and other designs, such as photographic memory triggers and technology, stimulated reminiscence about former roles and helped retrieve residents’ meaning of self and pur- pose. in addition, in their qualitative study exploring the importance and meaning of musical experiences for people with dementia, mcdermott et al. [ ] elicited perspectives on music-based interventions. participants included residents with dementia from two care homes with dementia, care home staff and music therapists. music was perceived to be emotionally meaningful for people with dementia and allowed various levels of en- gagement including listening to music and singing. staff acknowledged that music triggers particular memories, which then leads to notable positive changes in resi- dents. individuals were described as having a musical identity, which that related to specific life events and eras. although, lyrics and songs can have a legacy com- ponent, particularly in terms of memories, this was not highlighted in the study. in addition, the authors of this paper acknowledge that their findings may not be ad- equately representative of people with mild to moderate dementia. similarly, chaudhury [ ] conducted an empirical study of residents from nursing homes which included people with dementia, who were encouraged to dis- close their narratives of lived experiences as stimulated by meaningful places from their past. childhood places in particular were well recalled and associated life events were also accessed. photographs served to enhance ac- cess to such narratives. the process was recognised to promote the person’s sense of self. places were specifically recognised as significant for offering a way to structure meanings of the person’s past. therefore, as- pects of legacy here can be seen to be inherent in the ex- istence of the place themselves, and also the aids (e.g., photographic aids) that allow recall of such places. photographic aids were also used to encourage personal storytelling in another study [ ]. similarly, gibb et al. [ ] analysed the stories elicited from nine people with dementia, who underwent paired and group reminis- cence sessions following tai chi exercises. the tai chi exercises were seen to aid focusing thinking. the initial reminiscence procedure, which involved cognitive and psychomotor tasks were eventually deemed inappropri- ate for most participants, so incorporated tangible cues, e.g., guided imagery and photo albums, from the fourth session onwards. the tangible cues were not discussed as having legacy attributes, but did help participants to divulge past events and treasured memories. these were particularly centred on early life, including, parenting and family. however, participants were unable to follow their narrative through to a full construction conveying life experience. other studies where the aspects of legacy were not made explicit, but were surmised, included those where there was not a tangible outcome; rather knowledge and insight into the person with dementia was gained. for instance, a grounded theory study by cooney et al. [ ] used in-depth interviews with residents with dementia, their relatives, and healthcare professionals to gain insight into their perceptions of reminiscence. the main implications were at a practical level, in which staff were able to ascertain what was important for the residents in the present, by learning about their past. therefore, the legacy component was acquired through knowledge, as opposed to a tangible life story book. however, conver- sations were boosted through the use of photographs to encourage disclosures. the authors do caution that the success of implementing reminiscence is affected by the resident’s stage of dementia, co-morbidities and personal preferences; staff time availability; and the organisational culture of long stay facilities. this study was mainly drawn from data relating staff perspectives, which limits understanding into residents’ points of view, and as such, less person centred. a literature review looking at the benefits of pet ther- apy [ ] suggested that the presence of an animal can stimulate particular memories and conversations around these memories, including talking about past pet owner- ship. discussed in the context of nursing homes, the au- thor does, however, highlight particular cautions. these include an awareness that pets may not be welcomed in a communal space; particular animals may be regarded as “unclean” or “dangerous” by some cultural groups; and the presence of an animal may pose potential risks johnston and narayanasamy bmc geriatrics ( ) : page of to some residents. just as the presence of a pet was iden- tified as triggering specific memories, doll therapy was also identified as a psychosocial intervention used to gain insight into people with dementia [ ]. in their re- view, heathcote and clare [ ] suggested that dolls had symbolic significance, and allowed people to convey feel- ings that they struggled to communicate to others. in addition, they found that interacting with dolls can help people with dementia to think about the past and make sense. however, these authors also discuss the possible controversies of this type of intervention, which may have ethical implications [ ]. these include issues around whether doll therapy is deceitful, in the case of allowing the person with dementia to believe that the doll is a baby or living being; whether it is patronising; and questions over whether the person’s dignity is re- duced through use of the intervention. in addition, another literature review [ ] highlights that empirical evidence for the use of dolls is sparse and much of the information is provided by anecdotal sources. nevertheless, these anecdotal evidence remain positive for the use of these tangible dolls [ ]. in con- trast to the criticism of doll therapy being dignity- reducing, higgins’ review [ ] argues that it does in fact preserve dignity, since the intervention can allow some- one with dementia to take on a familiar role, which may have been rewarding for them earlier in life. moreover, heathcote and clare’s review [ ] suggests that other similar objects could be used to facilitate reminiscence that may not be perceived as controversial, such as toy trains [ ]. therefore, with much of the literature, even though leg- acy was not directly mentioned, it could be surmised from the nature of the intervention, that they had the potential for legacy. this was the case for articles discussing life story work, reminiscence therapy, music therapy using song lyrics, doll therapy and animal therapy; where there was something tangible that could be linked to memories and disclosed life stories [ , , , , , – , , , , , , – ]. although, it is possible to see the leg- acy potential in the fact that tangible memories were pos- ited, this was not acknowledged within these sources and was not a recognised aim or focus of the research. this does suggest that the legacy components of these psycho- social interventions would be worthy of more explicit ex- ploration in the research evidence. many of the studies and reports that were reviewed dis- cussed life story work and reminiscence and resulting life story books as positive, by highlighting that such ap- proaches allowed aspects of the person’s identity to come to the fore, which was emphasised with particular promin- ence in the grey literature [ – ]. however, as men- tioned before, the literature also identified drawbacks relating to ownership and influence of content of life story books [ ], where family members sometimes had priority over the person with dementia as to what was included. this meant that some aspects of the person’s life could not be represented, and as such was less person centred. acknowledging the person behind the patient some psychosocial interventions allowed the person’s identity to be emphasised beyond their illness. this in- cluded ways in which the interventions enabled former roles, experiences and achievements to be revisited. psy- chosocial interventions which included some form of reminiscence were more likely to allow people with de- mentia to explore previously held roles, enabling part of the person’s life story to be conveyed. many of the inter- ventions allowed people with dementia to revisit past roles through memories or activities. access to past roles through memories was the case for studies and research around reminiscence and life story work [ , , ]. according to these studies, triggering previous feel- ings based on earlier experiences was generally found to be positive for the person. moreover, where there was a tangible product stemming from the intervention, relatives also appeared to benefit from being given the op- portunity to learn about the person. scherrer et al. [ ] study on couples’ life story work revealed that the partner of matthew- a man with alzheimer’s disease- wanted his time in employment to be recognised during the sessions and in the resulting life story book. this was shown to bring about excitement for matthew, suggesting that it was an important time in his life. the actual dyadic inter- vention was, however, designed to bring about memories and insights into their life as a couple, as opposed to sep- arate memories. in a narrative research study conducted with five nursing home residents with mild to moderate de- mentia [ ], life story work was found to show the individuality of each participant by acknowledging that they each had a different story to tell, motivated by different reasons. these involved recalling former roles and making sense of traumatic events. whilst mckeown et al. [ ] agree with the positive effects of life story work, acknowledging that it can be success- ful in preserving memories of earlier experiences and roles, they warn that it may also lead to thoughts about loss resulting from the illness. the review found that particular objects were also found to stimulate reminiscence, whilst serving to provide insight into previously held roles, for example lifestyle stations [ ], handbags [ ] and memory boxes [ ]. buse and twigg’s [ ] study, in particular, drew attention to the pertinence of handbags as bio- graphical objects with specific links to identity, for example larger bags being associated with parenthood and carrying children’s belongings. moreover, although johnston and narayanasamy bmc geriatrics ( ) : page of content such as money had no function in the present context of where the female participants in this study were, money was symbolic as it had once been very significant and linked to previous roles and responsibilities, such as shopping for the family. in- deed, the authors suggest that discarding handbags for these women may symbolise resignation to institu- tional life. in benbow’s [ ] study looking at design features, the four studies featured in the review discussed how de- signs triggered reminiscence by purposely building on residents’ life stories and former roles/skills. for example memory stations encourage residents to practice particu- lar skills that are derived from their life stories, including former job roles. in addition, damianakis et al. [ ] looking at multimedia biographies from life story work intervention found that the content helped to trigger previous feelings that patients had about themselves, based on points in their earlier lives. this included what they were wearing and who they were with in photo- graphs. this also proved beneficial for family members who had forgotten what the person with dementia had been like pre-illness. similarly, in subramaniam et al. [ ] evaluation of life review and life story book produc- tion, one son of a participant with dementia, appreciated the chance to revisit memories and life events that he had shared with his mother. remembering boxes created from reminiscence sessions also allowed objects to be accommodated, which represented past interests and roles [ ]. beyond reminiscence and life story work, doll therapy was also highlighted as a means of allowing former roles and aspects of identity to be brought to the fore. doll therapy was endorsed as an intervention to help people with dementia to take on familiar roles [ , ]. higgins [ ] exploration of doll therapy cites gibson’s [ ] study in which the daughter of a lady with dementia found that having a doll allowed the latter to access a time in her life where she felt in control. moreover, it allowed the daughter to draw comfort by considering that this display of love and affection would have been applied to her when she was a baby. doll therapy may be particu- larly helpful for people who have an inherent maternal and/or nurturing desire and may lead to reminiscing about their role as parents as found with healthcote and clare’s study [ ] and cited studies within heathcote and clare’s review [ , ]. similarly, animal assisted therapy was found to trigger conversations recounting memories of being a pet owner [ ]. however, as ad- dressed earlier, there are controversies which exist around the use of both doll therapy and animal-assisted therapy. doll therapy may be met with negative reac- tions [ ] and instigate ethical dilemmas as to whether or not such therapy is patronising, undignified and operates by deception since some people with dementia may believe the doll to be a real baby [ ]. animal- assisted therapy may be difficult to implement in com- munal settings such as nursing and residential homes since not all residents may like animals, based on their personal and/or cultural beliefs [ ]. music-based interventions were also found to help ac- knowledge the person behind the patient, as explored through qualitative interviews and focus groups with residents with dementia in care homes, their families, care home staff and music therapists [ ]. one resident spoke about singing music he remembers from being a child, despite forgetting other things. however, reminis- cing about previous roles through the use of music was also upsetting, as it reminded one of past youth, which is now gone. this is a reminder of mckeown et al. work on life story interventions, which also highlighted this issue [ , ]. the theme of acknowledging the person behind the patient was also apparent in situations where the inter- vention helped the person with dementia to convey and express aspects of their present identity. retaining as- pects of self, identity and individuality was evident in studies around reminiscence therapy, with this particular intervention endorsed as a means of focusing on the person’s ability as opposed to their impairment [ , ]. likewise, williams et al. [ ] report found that the life review process allowed an outlet for the complex inner worlds of people with dementia, thus reflecting great self-awareness. life story work and reminiscence was found to generate a sense of self, enhance self- esteem, help self-understanding and affirm selfhood ([ , – , ]. one study [ ] highlighted how life story work served to re-affirm the selfhood of partici- pants who had memory loss and re-establish their re- lationships with family members. likewise, family members were encouraged to see the person who is still present. also of significance is the way in which life story work can help establish a person’s future by clarifying wishes [ ], whilst also showing the diver- sity of identity by revealing unique stories for each person [ ]. specific interventions were salient in helping to pro- mote identity of people with dementia. for instance, buse and twigg [ ] found that handbags were a key object representing normalcy for female residents in care homes. when looking at place-based reminiscence, chaudhury [ ] found that induced home-related mem- ories contributed to continuation of the self. the doll therapy could provide opportunities for people with de- mentia to fulfil a natural maternal instinct and thus ex- tending previously held roles into the present [ ]. similarly, mcdermott et al. [ ] pick up on “musical” identities that emerge through the experience of johnston and narayanasamy bmc geriatrics ( ) : page of engaging with music. the literature also identified stud- ies which took into account the partners of people with dementia and reported the benefits of couples’ life story approaches [ , ]. this technique allowed communi- cation and understanding between couples to improve and also recognised the status of the person with de- mentia as being part of a couple. subscribing to our perspective of legacy as stated earlier, acknowledging the person behind the patient can be seen to link with legacy, since it encourages and helps the per- son with dementia to reveal more about their story in terms of their identity and achievements. grey literature sources, which explored the use of personalised profile forms, highlighted that these forms enable staff to have a clearer picture of present issues for the patient, in terms of their likes, dislikes, preferences, and key information such as important relationships. as key facets of identity, making a record of these aspects can provide insight into the person behind the patient. the literature acknowledges that personalised profile forms were seen to enhance person-centred care and promote dignity [ , , , , ]. facilitating meaningful engagement this theme contributed to understandings of how the intervention enhanced personhood, because it identified ways in which the person with dementia elicited feelings of meaning and purpose. in the studies reviewed, this often translated as whether the person enjoyed the experience of the intervention and gained pleasure. these aspects were well explored in the studies, pre- sented as specific aims as part of analysing effects of the interventions. subsequent analysis and discussion in several studies acknowledged whether the intervention allowed mean- ingful engagement and enjoyment to materialise. the insight provided by facilitating meaningful engagement is particularly useful when using this review’s earlier def- inition of “personhood” as referring to the status of be- ing a person and related elements such as recognition, respect and trust. meaningful engagement was often linked to the interventions’ ability to instigate hope. interventions that facilitated meaningful engagement were either directly meaningful or enabled meaningful activities to follow [ , , , , , ]. for instance, holm et al. [ ] looked at the therapeutic role of story- telling in patients with dementia. participants attended a group session in which they were encouraged to take part in associative conversations through storytelling and bring in past experiences. the intervention led to participants feeling pleasure and experiencing fellowship. reminiscence provided hope by enabling the person with dementia to be treated as an individual. this was particularly noticeable for cooney et al. study [ ] featuring care home residents, who were encouraged by the fact that staff were interested in their lives [ ]. moreover, staff specifically noted that the residents’ en- gagement improved and that relationship between staff and residents were strengthened. being listened to was also acknowledged as significant to participants who had undergone a life review in williams et al. [ ] study. in addition, moos and björn [ ], highlight a number of studies which found that wellbeing, enjoyment and in- teractions increased following individual and group rem- iniscence [ – ]. musical interventions also served to be emotionally meaningful for participants who had late-stage dementia in mcdermott et al. study [ ], with one participant finding that songs helped to support his personal identity. the production of remembering boxes and poetry, following reminiscence sessions in hagens et al. study [ ], led to joyful moments for residents with dementia, particularly facilitating stimulating conversations and positive feelings. moreover, the residents featured in this study were able to take control and lead interactions with others, which gave them satisfaction, wand also motivated further conversation. the remembering boxes underwent testing to confirm that they did not lead to anxiety or agitation. in addition, dempsey et al. [ ] con- cept analysis into reminiscence suggested that the inter- vention can aid problem solving in the present situation by guiding the person to draw on past coping strategies. this can help the person to acquire a sense of continuity and meaning in life. however, these authors also raise awareness about the potential negative effects regarding the retrieval of unhappy memories around loss or pain. they concede that negative repercussions can be guarded against if a person-centred approach to care is taken, in- cluding gaining knowledge of the person [ ]. one study [ ] explored a life story programme which collected the oral histories of people with memory loss and presented these in a high-quality broadcast cd. participants with memory loss implied that one positive aspect was that it allowed access to memories that they did not realise they had. secondary outcomes of using life story work and reminiscence were often focused on enhanced con- nections and stimulating interactions with others such as relatives [ , ]. moreover, this was particularly enhancing to personhood when the person with de- mentia was found to be leading and controlling such interactions [ ]. in addition, specifically life story work was found to help participants with dementia to find meaning in loss and enabled reflection and en- gagement [ , , ]. prominent authorship of life story products, such as multimedia biographies in crete-nishihata et al. study [ ] meant that partici- pants experienced self-growth and a sense of having johnston and narayanasamy bmc geriatrics ( ) : page of achieved something. with couple’s life story work [ ], the couples were reported to have enjoyed the collaborative process and this was partly reflected in increased intimacy. moreover, allowing the couple to review their life together in this way emphasised the partnership, and acknowledged the meaningful rela- tionship that they have together. similarly, storytelling as an intervention offered meaning to life by bringing consolation to participants [ ]. a systematic review looking at life story work [ ] suggested that patients who received the intervention were more likely to describe it as an enjoyable activity. furthermore, this was not just due to the activity per se, but also because of elements such as companionship, which was achieved through the sharing of the book. benefits of life story work were also apparent in the grey literature. robinson and tyndale-biscoe [ ] report that a personalised profile form, developed for people with dementia to fill out on admission to hospital, has the potential to improve communication for patients. on the other hand, a one study with older people with de- mentia [ ] suggested that participants did not explicitly show that they enjoyed the life story intervention, but conceded that they did convey pride at showing their life story and receiving interest in this. one empirical study looked specifically at life review [ ]. life reviews are sessions which encourage a person to recount and evaluate through their life experiences chronologically, and may result in the production of a life story book [ ]. williams et al. [ ] used one-on- one conversational sessions with community-dwelling military veterans who had mild cognitive impairment and early dementia. these authors found that even when thinking about dissatisfaction and past regrets, the life review helped participants to find meaning in loss and thus served to conserve their dignity. the life review process also allowed participants to consider strengths and weaknesses, and therefore be more accepting of circumstances. in addition, being listened to (as facili- tated through the life review process) was met with positive reactions by participants and enhanced their personhood. discussion legacy and personhood understanding the extent to which psychosocial inter- ventions were related to legacy was best understood through the themes of offering aspects of legacy and acknowledging the person behind the patient. largely, psychosocial interventions which related to legacy were some form of either life story work or reminiscence ther- apy. understanding a person’s biography is highlighted as an important aspect of person-centred care [ , ]. moreover, it is recognised that humans are narrative beings [ – ], and one’s story is pertinent to identity and the self [ ]. this is supported by the idea that ill- ness has been described as a biographical disruption [ ]. in this review, some studies mentioned the legacy aspects and highlighted that this allowed the person’s story to be captured in a form that could endure, be revisited, prevail and be accessed by future generations within, and out, of the family. however, generally, the legacy aspect of interventions was not explicitly explored or developed, and when legacy potential existed, it was not always highlighted; rather it was inferred by us, as the authors of this review, based on our earlier estab- lished definition of legacy. life story work interventions in the studies reviewed, allowed participants to convey their stories, and in many cases, the stories were recorded through life story books or digital formats. the adaptation of this to personalised profile forms for hospital environments were only identi- fied through largely grey literature. such forms have been described as a “personal passport”, enabling a per- son’s personal history to be captured and to help get a sense of the person beyond the illness [ ]. reminis- cence was highlighted as having different intentions to life story work [ , ], with the latter going beyond recall of memories and incorporating evaluation and re- synthesis of past experiences. the studies around remin- iscence discussed the use of objects to stimulate recall and reveal life stories. they allowed former key roles to be revisited. for example, doll therapy [ , ] and ani- mal therapy [ ] enabled the nurturing role of early par- enthood to be fulfilled. similarly, buse and twigg’s [ ] study showed how handbags were significant biograph- ical objects, which could stimulate reminiscence about being a parent or dressing up for an evening out. al- though, benbow’s [ ] review around design features (such as the implementation of lifestyle stations), clearly demonstrated how specific former roles could influence design, the effect of this was not developed, due to a lack of empirical data. another intervention that had legacy potential was storytelling [ ] which utilised general and personal photographs to revelations of stories. the two themes of offering aspects of legacy and acknowledging the person behind the patient, also allowed the psychosocial interventions to be assessed for their ability to enhance personhood. this is because ac- knowledging the identity of the person beyond the ill- ness, attributes a human status to them. interventions with a legacy component serve to help preserve key as- pects of the person’s identity from past and present and can enable these to prevail beyond illness deterioration and death. however, when relating more specifically to enabling meaning and purpose, assessing personhood was best done through the theme of facilitating meaningful johnston and narayanasamy bmc geriatrics ( ) : page of engagement. personhood attributes the status of being a person to an individual [ ] and has gained pertinence in research concerning people with dementia, since people with dementia are thought to be particularly vul- nerable to having personhood eroded [ ]. dewing [ ] proposes that this is linked to the cultural belief that associates intact cognition with the status of being a per- son. moreover, personhood is linked to personal con- tinuity and the continuity of one’s narrative [ , ]. personhood is also linked to hope and existential reflec- tions around meaning and purpose [ , ]. the stud- ies in this review generally explored personhood aspects well, particularly in terms of meaning, purpose, and en- hanced wellbeing and engagement. the studies conveyed aspects of personhood as aims of the research and ex- plored how these aspects of personhood were impacted by the interventions through analysis. the enablement of individuals to maintain their self and identity, elicit hope and enjoyment, and find meaning and hope, were well reported in the studies, with empirical studies highlighting evidence around levels of enjoyment, ac- commodating discussion around people’s verbal and non-verbal reactions to interventions. in addition, specif- ically the intervention(s) enabling a sense of continuity for the person were also identified. for example, notions were generated about how interventions enabled people to foster a sense of self and allowed abilities to be recognised. however, some literature only discussed the intervention(s) as having the potential to provide such benefits, as opposed to citing empirical evidence [ , ]. strength and limitations this integrative review has had a particularly focused agenda to assess psychosocial interventions based on their link to personhood and legacy and has recognised themes according to these. this could potentially mean that other important issues and themes, unrelated to personhood and legacy, may be key to understanding the perspectives of people with dementia, and these have not have been considered or highlighted. for example, past reviews have looked at effects of psychosocial inter- ventions in reducing symptoms of dementia. this review had a focused aim to explore personhood and legacy, so only focused on these aspects during analysis. although, aspects of personhood were explored in much of the studies included, the term “personhood” was not always mentioned directly. it is possible that our conceptual- isation of personhood, though based on established definitions, may not resonate with other people’s un- derstandings. methodological limitations exist around the processes of inclusion and exclusion, which were based on what may be considered as subjective cri- teria. part of the exclusion process was based on whether the intervention had the potential to enhance personhood and enable the person to leave a legacy. in some cases, this was difficult to establish from the title and abstract, and may have meant that relevant articles were excluded. moreover, the inability to perform methodological appraisal on such diverse sources of litera- ture, means that articles could not be assessed for meth- odological strengths. this means that applicability to practice may be limited, since this review cannot ensure that it offers findings from the most methodologically strong papers. however, despite these limitations, this review has ad- dressed an under-researched area, which is particularly important in terms of understanding the perspectives of people with dementia. findings indicate that legacy com- ponents and enhancement of personhood are important and relevant to people with dementia, their families and staff involved in their care, suggesting that further re- search will be beneficial. to address the gap in this area, the review incorporated sources from across the evi- dence base to offer a comprehensive integrative review of all available research evidence, and gives a useful overview of which psychosocial interventions relate to personhood and legacy, how they do this, and what some of the effects are. implications for practice care and research aspects of personhood were generally well reported in the studies included. although personhood was not al- ways specifically termed, based on the definitions that this review subscribed to, it is evident that enhancement of personhood has been explored as an effect of inter- ventions with some positive effects acknowledged. this suggests that formal and informal carers of people with dementia could consider life story work, reminiscence therapy, doll therapy and animal assisted therapy as strategies to possibly enhance personhood. specifically with life story work, which also offers a legacy compo- nent, the review has found that people with dementia value this when a collaborative element is present. it would be useful for “personhood” as a concept to be dir- ectly addressed and explored in research. however, there are limitations to these interventions and caution erred that should be taken into account when using these for people with dementia. such limitations have been briefly outlined in this review, for example, the fact that life story work may bring about feelings of loss [ ]; remin- iscence leading to the retrieval of unpleasant memories [ ]; the controversies around doll therapy [ , ]; and the difficulties that may be faced with implementing animal-assisted therapy [ ]. with regards to assessing the interventions, based on their relation to legacy much had to be surmised, since, although, the potential for legacy could be identified and johnston and narayanasamy bmc geriatrics ( ) : page of we were able to recognise ways in which the interven- tions offered aspects of legacy, the articles themselves did not highlight this or adequately develop exploration around this. moreover, legacy potential was never priori- tised as part of the research agenda. in order to ascertain helpful insights into interventions which relate to legacy, more focused studies on this aspect are needed. in particular, and in line with established definitions of “legacy”, it would be useful to see whether legacy prod- ucts such as life story books are read by families and future generations after the person with dementia has died. it may be particularly useful to directly explore the perspectives of people with dementia to ascertain whether they feel that legacy components are important for available psychosocial interventions. conclusion this integrative review had a focused agenda to identify, appraise and assess interventions for people with de- mentia, as described in the literature, based on their ability to enhance personhood and relate to legacy. this has been achieved by identifying key themes to help classify previous research around this and acknowledge the potential for further research. generally, although personhood aspects were well reported, insights into leg- acy requires further attention and needs to be looked at more specifically and even beyond the patient’s life tra- jectory. therefore, further research might involve mak- ing exploration of legacy components a key, prioritised aim of the research. in addition, more perspectives from people with dementia are needed, rather than family members and staff. data availability statement all data are in the paper and supplementary files. competing interests the authors declare that they have no competing interests. authors’ contributions bj designed the study, reviewed and interpreted the literature and drafted the manuscript. mn carried out the original literature searched, contributed to analysis and interpretation of the literature and was involved in drafting the manuscript. both authors read and approved the final manuscript. 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in an alzheimer’s day-care center. am j alzheimers dis. ; ( ): – . . rentz ca. memories in the making: outcome-based evaluation of an art program for individuals with dementing illnesses. am j alzheimers dis other dement. ; ( ): – . . swee h, heathcote j. part one: the value of reminiscence. nurs residential care. ; ( ): – . . woods b, spector ae, jones ca, orrell m, davies sp. reminiscence therapy for dementia. cochrane database syst rev. ; ( ). . williams s, keady j. editorial: the narrative voice of people with dementia. dementia. ; : – . . baldwin c. narrative, ethics and people with severe mental illness. aust n z j psychiatry. ; ( – ): – . . bruner j. life as narrative. soc res: an int q. ; ( ): – . . kelly mp, field d. medical sociology, chronic illness and the body. sociol health illn. ; ( – ). . bury mr. chronic illness as biographical disruption. sociol health illn. ; ( ): – . . charalambous l. comment: “about me” puts a person at the heart of patient-centred care. nurs times. ; ( ): . . harre r. the singular self: an introduction to the psychology of personhood. london: sage publications ltd; . . apter m. negativism and the sense of identity. in: breakwell g, editor. threatened identities. london: wiley; . . allen fb, coleman pg. spiritual perspecives on the person with dementia: identity and personhood. in: hughes jc, louw sj, sabat sr, editors. dementia mind, meaning and the person. oxford: oxford university press; . p. – . • we accept pre-submission inquiries • our selector tool helps you to find the most relevant journal • we provide round the clock customer support • convenient online submission • thorough peer review • inclusion in pubmed and all major indexing services • maximum visibility for your research submit your manuscript at www.biomedcentral.com/submit submit your next manuscript to biomed central and we will help you at every step: johnston and narayanasamy bmc geriatrics ( ) : page of 	abstract 	background 	methods 	results 	conclusion 	background 	previous systematic reviews of psychosocial interventions for people with dementia 	personhood and legacy 	how and why the psychosocial interventions were chosen 	methods 	aims and objectives 	ethics 	search of the literature 	search outcomes 	methodological and theoretical rigour of included articles 	classifying previous research 	data synthesis 	results 	offering aspects of legacy 	acknowledging the person behind the patient 	facilitating meaningful engagement 	discussion 	legacy and personhood 	strength and limitations 	implications for practice care and research 	conclusion 	data availability statement 	competing interests 	authors’ contributions 	acknowledgments 	references sample thesis title with a concise and accurate description i exploring the lived experience of the human-companion animal relationship for people with cancer by nandini maharaj b.a., the university of british columbia, m.a., the university of british columbia, a thesis submitted in partial fulfillment of the requirements for the degree of doctor of philosophy in the faculty of graduate and postdoctoral studies (interdisciplinary studies) the university of british columbia (vancouver) october © nandini maharaj, ii the following individuals certify that they have read, and recommend to the faculty of graduate and postdoctoral studies for acceptance, the dissertation entitled: exploring the lived experience of the human-companion animal relationship for people with cancer submitted by nandini maharaj in partial fulfillment of the requirements for the degree of doctor of philosophy in interdisciplinary studies examining committee: arminee kazanjian co-supervisor bill borgen co-supervisor rosemin kassam supervisory committee member ken bassett university examiner marla buchanan university examiner iii abstract more than half of canadians share their homes with a pet (i.e. companion animal). outside of the home, researchers and practitioners have increasingly embraced pets for their health-enhancing potential. still our understanding of the relationship between cancer patients and their pets remains inadequate and incomplete. the purpose of this phenomenological study was to explore the lived experience of the human-companion animal relationship for people with cancer. i sought to examine how people engage in meaning-making through their intimate relationships with their pets. i recruited participants from cancer centres and community-based organizations that provide psychosocial support to cancer patients and their families. using the method of photo-elicitation, i conducted in-depth interviews with nine women and five men. the participants varied with respect to age, the stage and type of cancer, and the type of pet in their care (e.g. dog, cat, and fish). after transcribing the interviews verbatim, i analyzed the transcripts using an iterative process of reading, reflecting upon, and writing out my interpretations. one such method involved seeking the assistance of researchers and health care professionals to analyze data extracts from the original interviews. from the eight phenomenological themes that i generated, i identified three higher-level themes, known as super-ordinate themes, which correspond to the following meaning-making strategies: disengagement/acceptance, distraction, and support seeking. these super-ordinate themes are presented using anecdotes and quotations from participants, as well as, my own interpretive commentaries. i discuss the findings in light of theoretical constructs and empirical research. highlighted in the discussion are implications of the study for research and practice in supportive cancer care, along with potential avenues for future investigation. iv lay summary the purpose of this study was to explore the meaning of pets for people with cancer. phenomenology is a research method that can be used to draw out people’s experiences in order to understand what is unique to an individual, and what is common to human experience. i interviewed nine women and five men, and invited them to bring in photos of their pets for discussion. after transcribing the interviews, i read the transcripts repeatedly, wrote out my interpretations, and discussed the findings with researchers and health care professionals. i identified eight themes, which i then organized into three overarching themes. themes refer to patterns of meaning that repeat themselves in a set of interviews. some themes confirm findings from previous studies while others offer new insights into the meaning and importance of the human-pet relationship. i conclude with health system implications of the study and directions for future research. v preface this dissertation, including the research design, data collection, interview transcription, data analysis, and manuscript writing, is my original work. i sought feedback from my supervisory committee in designing and implementing the study protocol, including the participant recruitment strategy and interview guide. after completing a first round of analysis on the interviews, i sought the assistance of two human-animal bond researchers and three cancer care specialists with analyzing data extracts from the interviews. i received approval to conduct this study from the behavioural research ethics board of the university of british columbia. the ubc ethics certificate number is h - . vi table of contents abstract ................................................................................................................................... iii lay summary ........................................................................................................................... iv preface ....................................................................................................................................... v table of contents ..................................................................................................................... vi list of tables ............................................................................................................................ xi list of figures..........................................................................................................................xii acknowledgements ................................................................................................................ xiii dedication ................................................................................................................................ xv prologue ..................................................................................................................................... chapter : introduction ............................................................................................................ . background of the study.............................................................................................. . relevance of the study ................................................................................................ . defining key concepts ................................................................................................ . . the psychosocial impact of cancer.......................................................................... . . the human-animal bond ...................................................................................... . . meaning-making and spirituality........................................................................... . theoretical framework .............................................................................................. . . attunement and relationship science .................................................................... . . carver’s model of resilience and thriving ............................................................ . phenomenological approach to the study .................................................................. chapter : literature review ................................................................................................. . pets and human health .............................................................................................. vii . . salutary effects of pets .......................................................................................... . . therapeutic effects of pets .................................................................................... . . companion animals and cancer ............................................................................ . human health and spirituality ................................................................................... . . cancer and spiritual coping .................................................................................. . . cancer and meaning-focused coping .................................................................... . . cancer and meaning-making ................................................................................. . spirituality and pets ................................................................................................... . . spiritual significance of the human-animal bond ................................................. . . sacred consumption and the human-animal bond................................................ . . meaning-making and companion animals ............................................................ . conclusion................................................................................................................. chapter : methodology ......................................................................................................... . phenomenological approach to inquiry ..................................................................... . . philosophical underpinnings of phenomenology ................................................... . . situating max van manen’s phenomenology ......................................................... . . . phenomenology as attitude ............................................................................. . . . phenomenology as method ............................................................................. . . . phenomenology as writing and reflecting ....................................................... . research design ........................................................................................................ . . methods for collecting lived-experience descriptions ......................................... . . . the experiential data-gathering interview ....................................................... . . . photo elicitation ............................................................................................. viii . . study procedures ................................................................................................... . . . participant selection ....................................................................................... . . . recruitment and research context ................................................................... . . . interviews ...................................................................................................... . data analysis ............................................................................................................ . . reflective methods for exploratory noting and theme development .................... . . . making initial and exploratory notes .............................................................. . . . developing emergent themes ......................................................................... . . . isolating phenomenological themes ................................................................ . . reflective methods for writing and rewriting a phenomenological text............... . . . the experiential anecdote ............................................................................... . . . the vocative method ...................................................................................... . . . the data-interpreting interview ...................................................................... . . trustworthiness criteria for qualitative research .................................................. . . . conditions for data collection ......................................................................... . . . conditions for data analysis ........................................................................... chapter : results ................................................................................................................... . demographic characteristics ..................................................................................... . findings ..................................................................................................................... . . super-ordinate theme: (dis)connecting with the journey ...................................... . . . it’s hard to erase those words ......................................................................... . . . it’s amazing how in evolution ...................................................................... . . . it flickers by so quickly ................................................................................ ix . . super-ordinate theme: pulling you out of yourself .............................................. . . . it’s sort of silly, but ...................................................................................... . . . it’s a sense of responsibility ......................................................................... . . super-ordinate theme: speaking volumes with their actions .............................. . . . it’s a silent kind of love ................................................................................ . . . it mattered that they were there .................................................................... . . . it’s like each living thing has meaning .......................................................... . reflections on the use of photo-elicitation .............................................................. chapter : discussion ........................................................................................................... . overview of the study ............................................................................................. . theoretical framework revisited ............................................................................ . key findings from the eight phenomenological themes ......................................... . . kindred play ........................................................................................................ . . mattering presence .............................................................................................. . . impetus to hope ................................................................................................... . . animal-human divide ......................................................................................... . . transcendent relationships .................................................................................. . implications ............................................................................................................. . . play and social connection .................................................................................. . . enrichment and engagement ................................................................................ . . empathy and imaginal coping ............................................................................. . limitations .............................................................................................................. . future directions ..................................................................................................... x . conclusion............................................................................................................... references.............................................................................................................................. appendices ............................................................................................................................ appendix a literature review search strategy ................................................................... appendix b recruitment poster .......................................................................................... appendix c consent form .................................................................................................. appendix d interview guide ............................................................................................... appendix e demographic questionnaire ............................................................................. appendix f example of exploratory noting and isolating themes ..................................... xi list of tables table participant socio-demographic and cancer information ................................................. table pet information ............................................................................................................. xii list of figures figure intersections identified in the literature ........................................................................ figure the eight phenomenological themes organized into super-ordinate themes .................. figure title and abstract screening to identify primary and secondary literature ................... xiii acknowledgements i gratefully acknowledge the women and men who took part in this study. i was deeply touched by the vulnerability and fearlessness you showed while sharing your stories with me. i wish you and your beloved animals a long and happy life together. i thank my supervisory committee, arminée kazanjian, bill borgen, and rosemin kassam for their continued support and encouragement. your guidance has been invaluable to the development and success of this project. i acknowledge funding support from the social sciences and humanities research council and ubc affiliated fellowships. thank you to steven taubeneck and enid ho. i offer my gratitude to the following organizations for promoting the study: callanish society, bc cancer agency, vancouver ecovillage, and simply natural raw pet food. thank you to lyn rae, colleen haney, and barbara weber. a very special thank you to dr. richard calland for the care and attention you have shown dally over the years. it is no surprise that the first poem i ever wrote was about dogs: to peppy, lassie, peppy’s son, and laddie. and to all the brindle brothers and great southern writers. to rusty, thank you for breathing life into me. i’ve never needed someone so much. you test my patience everyday but i love you dearly…so until tomorrow… to frankie, thank you for your warmth, penetrating stare, unabashed jealousy, and total disregard for personal space. with you, under the moonlight, i never feel left behind. to ma, thank you for bringing light to our home. you are an exceptional mother. thank you for your care and devotion and all the warm meals and handmade clothes. xiv to daddy, i hope i’ve made you as proud as when i said “pearl white.” thank you for keeping me up late to watch psycho, jaws, and every bruce lee movie (and cinderella too). i share with you a love of dogs, talent for art, and unmatched loyalty. please take care of dally. to mum, with love. you are the first and best teacher i have ever had. i have been listening and learning from you even before we ever laid eyes on each other. you taught me letters and circles and everything in between. i love you more today than yesterday. thank you for showing me how to be a good mom to dally—the best mom. and remember all we have learned together: slide on the ice, give ‘em hell army, if you give away one you’ll only have two, it’s nice to be the nice, and doctors can’t change rule number one. you are the dorothy to my sophia (alright i’m rose), and the harry to my barbara (alright i’m carol). ‘night sweet prince xv dedication i dedicate this work to my dearest dally. you are a truly inspiring creature. you were not the dog i imagined but instead the son i never knew i wanted. your miraculous capacity to heal yourself never ceased to amaze me. you somehow woke up even handsomer every day. said the owl to the dove, you’re someone i can’t live without but have to let go. our sun bathing • bench sitting • deep conversations on our walks • evening walks with gayatri • chaise lounging • bath time singing • never-ending back scratches and then you pawing at me or biting me to continue scratching • finding a good use for my years of learning tv theme songs • cuddling on your couch at my insistence • the first time you initiated a snug after years • snugs and nuzzles at : • cleaning your wrinkles every morning • brushing your teeth while you bit my fingers • wrangling you into the bath tub, though you did try to make a get-away each time • tensely clipping your nails • watching you sleep with that grimace on your face • hearing you snore overnight and then worrying when i didn’t hear you snoring • kissing you on your shiny black lip, though you pulled away most times • licking my feet and legs after a shower • bum scratches in the bathroom • sitting at the top of the stairs when it was the first day of school • watching you see a horse for the first time • watching you in the snow on your first birthday • baking you treats • watching you enjoy your treats • our home run on the baseball diamond • taking you to see santa • chipping my tooth our first halloween • sneaking your pills into your food • watching you sneakily eat everything and leave the pill behind • pulling me into traffic to get away from someone you didn’t want to pet you • hiding under the coffee table when you didn’t want to go for a walk • our many vet visits and recovery periods • making a bed of anything on the floor prologue in accordance with van manen’s ( , ) treatment of the reduction, it was necessary to make my assumptions about the human-companion animal relationship explicit. i discussed my beliefs with others, formally and informally. i engaged in reflective journaling, keeping an audit trail of my questions and insights. i wrote about my profound curiosity and affection towards animals, both the ones i’ve shared my life with and those whom i’ve admired from afar. one such curious animal is the english bulldog or simply the bulldog. due to unethical breeding practices, this former bastion of athleticism is now ranked among the unhealthiest breeds with significant and enduring health problems. these are the same charges levied against me as the guardian of dally, a bulldog with characteristic health problems and uncharacteristic strength and resilience, the kind usually reserved for his genetic forerunners. dally is not my first dog, my fifth in fact, and we share an unspoken bond that always seems otherworldly to me. while waking from sleep, we open our eyes together in synchronous fashion. and even while loving this extraordinary creature whom i consider my son and twin soul, i’m aware that people think that he is just a novelty, a popular dog breed, or worse, a pitiable relic and tragedy of genetics and poor breeding. dally is not a dog to be underestimated. he walks with great agility and elegance without the distinctive waddle typical of some bulldogs. he eats with fervor, every time looking up as if to say “what’s next?” he sleeps deeply, snoring at times until he wakes himself and turns around to stretch out in another direction. he chews only one side of each new toy. he turns his head away from me as i approach him with a camera. he appears disdainful when i try to kiss him. he always wants me to initiate a cuddle (except for exactly three times). this genetic catastrophe is the love of my life. i often wonder why i relate to him so much and what his story shares with the stories that ground this dissertation. people look at dally and make up their minds about him. they look at me and my skin colour or see my first and last name. they wonder where i was born and what my first language is or in one memorable instance if i’m dally’s dog walker. these are the same thoughts i kept returning to while reflecting on the experiences of these individuals. i wondered how they could take of their pets while going through such a difficult time. i wondered if i myself would have the strength to care for dally if i were in their shoes. i wondered what they thought of me pursuing a phd about pets, of all things. when they spoke of the inevitability of losing their pet, my eyes welled up too, thinking about dally. when we shared a laugh, i thought of dally and his strange quirks. in hearing a participant’s story about euthanasia, i wondered if i would ever have to make such a difficult decision and would it be to end dally’s suffering or mine. i wondered all these things as i listened deeply to their stories. as i say later in this work, and paraphrase here, i sat with these once healthy human companions now suffering from the effects of the disease and its treatment. and then i thought of dally and how people discount him and underestimate him at every turn. i know better because of him and from the experiences of these women and men. as in the reduction, i pushed through my beliefs and concepts about what it means to be a cancer patient, attempting to appreciate the person before me. and still, it was not enough to see them as a person but to appreciate them as loving guardians who mattered to their pets. the themes and essences i uncovered are universal as i see them and write about them. but it wouldn’t be entirely true to say that these stories are altogether mine. these are the words and experiences of individuals, filtered through my assumptions and preconceptions. and if i’m truly honest with myself, if you want to know dally’s story, keep reading… chapter : introduction in this chapter, i introduce the reader to the phenomenon of interest—the human- companion animal relationship for people with cancer. i discuss the relevance of the study in the context of social science and health science research, as well as, contemporary approaches to studying the human-companion animal relationship. after discussing the concepts and theories underlying this research, i invite the reader to look beyond these concepts and theories in order to adopt the kind of “wondering pathos” that exemplifies phenomenological inquiry. phenomenology begins with wonder and curiosity, meaning we approach our inquiry with an openness and attentiveness to how people describe their lived experience. the chapter concludes with the research question. . background of the study many people experience a deep sense of affiliation and kinship with companion animals. companion animals are valued for their affection, companionship, loyalty, and authenticity. their inimitable qualities strike at the core of who we are as human beings allowing us to find meaning and purpose in the ordinary and mundane aspects of our lives. they remind us of the fragile nature of life and the interconnectedness of all living beings (skeen, ), which has been called the foundation of compassion (faver, ). this sense of interconnectedness along with a need to find meaning may take on particular significance when confronting a life threatening illness such as cancer (jim, richardson, golden-kreutz, & andersen, ; j. a. smith, flowers, & larkin, ). receiving a cancer diagnosis can profoundly impact people’s beliefs about themselves and their relationships (girardin, ; vachon, ). some authors refer to this as a “crisis of meaning” or “spiritual crisis,” leading to a search for meaning (carroll, ; van der spek et al., ). people often look to various sources to find meaning, including their interpersonal relationships (e.g. family, friends, community), creative pursuits (e.g. art, music, literature), and spiritual practices (e.g. meditation, prayer, yoga) (molzahn et al., ; pargament & mahoney, ; streng, ). the outcomes of this search for meaning often have implications for a person’s well-being and adjustment to cancer (molzahn et al., ). while some patients fare poorly in particular domains of psychological functioning such as anxiety and depression (johnson, meadows, haubner, & sevedge, ; mehnert et al., ; molzahn et al., ), a number of them demonstrate personal growth and resilience (costanzo, ryff, & singer, ). understanding the psychosocial factors that promote resilience in some patients and distress in others provides an important topic for investigation (carver, ; van der spek et al., ). during times of stress and illness, some people seek out animals for companionship and spiritual guidance (anderson & anderson, ; faver, ; goodall, ; hanrahan, ; holak, ; holt, ; manes, ; mcelroy, ). borrowed from the words of renowned primatologist jane goodall ( ), this affinity toward other living beings can be described as a “sense of wonder, of awe, that can lead to spiritual awareness” (p. ). likewise, temple grandin’s work as an educator and animal activist demonstrates that animals have much to teach us about our own spiritual development (grandin & johnson, ). by adopting a stance of openness and curiosity, we can enter into mutually beneficial relationships with animals that transcend notions of human superiority over nonhuman animals (faver, ; skeen, ). long recognized among indigenous groups, ancient cultures, and non-western teachings (coren, ; skeen, ), this spiritual kinship or bond between people and animals has garnered increased attention in academic disciplines as diverse as anthropology, philosophy, psychology, literature, and veterinary medicine (b. p. smith & litchfield, ). however, to my knowledge, this convergence of having a relationship with a companion animal, making meaning, and using spiritual coping has yet to be investigated within the context of cancer. the purpose of this phenomenological study is to develop an essential understanding of the nature and meaning of the human-companion animal relationship for people with cancer (van manen, ). . relevance of the study research indicates that, aside from physiological benefits associated with having a pet, many people cherish their pets’ companionship and its impact on their quality of life (podberscek, paul, & serpell, ; ryan & ziebland, ; staats, sears, & pierfelice, ). nevertheless, the health-promoting and therapeutic benefits of pets have attracted the most attention in peer-reviewed publications, media releases, and popular works (becker & morton, ; sakson, ; thomas, ). the emergence of animal-assisted interventions (e.g. visits with therapy animals) is buttressed by research linking interactions with therapy animals to physiological processes that are critical for maintaining one’s overall health (marcus, b). however, even as hospitals, nursing homes, and cancer care facilities continue to embrace therapy animals in their complementary and alternative programs, our understanding of the close bonds that develop between people with cancer and their companion animals remains inadequate and incomplete (franklin, emmison, haraway, & travers, ; ryan & ziebland, ). a study from the university of oxford suggests that the tendency to discount the role of pets in qualitative health research is not uncommon (ryan & ziebland, ). ryan and ziebland conducted a secondary analysis of in-depth interviews with people suffering from long-term conditions and the carers of these patients. the researchers found that the interviewers seldom initiated discussions about pets, even when pets were present, and often chose not to follow-up when participants talked about their pets. interactions between participants and their pets were described as “interruptions” in verbatim transcripts of the interviews. such findings are concerning when we consider that companion animals are involved in some of the most intimate areas of a person’s life (cohen, ; e. power, ). these cherished companions can provide researchers with valuable insights into relational dynamics that are important for a person’s health and well-being (balcombe, ; fraser, ; girardin, ; würbel, b). historically, research on the human-animal bond has been conducted using positivist methods such as laboratory experiments (fraser, ; shen-miller, ). such methods continue to play an integral role in strengthening the scientific credibility of approaches to studying the human-animal bond (würbel, a). for example, in animal welfare research, the use of behavioural and physiological measures has done much to advance our understanding of animal behaviour and cognition (fraser, ; grandin, ; shen-miller, ; würbel, a). national funding agencies have directed their efforts towards studying the health-related effects of pet ownership and pet therapy using robust scientific measures (cherniack & cherniack, ; fraser, ). although these findings are instructive, they fall short of providing an empirical understanding of the meaning or essence of the human-companion animal relationship for people with cancer (ryan & ziebland, ; shen-miller, ). many facets of the human-animal bond are not amenable to quantification or experimental manipulation. qualitative methods can provide the necessary empirical grounding from which to develop clinically meaningful applications and interventions (mcphedran, ). a considerable advantage of conducting qualitative interviews is the ability to probe further and elicit details about topics that are pertinent to the very people we wish to know more about in our work (k. t. ashing-giwa et al., ; krueger & casey, ; ryan & ziebland, ). qualitative methods aim to reveal the complexity of a particular phenomenon within its natural context (fraser, ; guba & lincoln, ). accordingly, researchers have the flexibility to move between inductive (i.e. driven by the data) and deductive (i.e. driven by hypotheses) reasoning to understand the meaning that people attribute to their experiences (morrow, ; shen-miller, ). consistent with a social constructivist epistemology (carter & little, ), this study draws upon qualitative methods that allow researchers and participants to co-construct rich narratives that are grounded in the experiences of the participants (shen-miller, ). in a previous study on the meaning of having a companion dog (maharaj, kazanjian, & haney, ), participants described their relationship with their dogs as having a spiritual quality. some participants reported that their dogs provided a connection to a loved one who had passed away. others described finding greater peace and enjoyment of being out in nature when accompanied by their dogs. extending this work, the purpose of this study is to understand the nature and meaning of the human-companion animal relationship during periods of serious illness and recovery. studying the experiences of people with cancer provides a rich context for exploring the deeply embodied meanings of the human-companion animal relationship. . defining key concepts . . the psychosocial impact of cancer the burden of cancer is considerable, with nearly one in two canadians expected to be diagnosed with cancer during their lifetime, and one in four projected to die from cancer in (canadian cancer statistics advisory committee, ). many cancer patients describe experiencing pain, functional impairments, chronic fatigue, existential concerns, and family burden (mehnert et al., ; van der spek et al., ). cultural understandings of cancer as being synonymous with suffering and death remain, in spite of progress in cancer care (bultz & carlson, ; waldrop, o’connor, & trabold, a). lung, breast, colorectal, and prostate cancer make up roughly half of new cancer cases and cancer deaths in canada (canadian cancer statistics advisory committee, ). slightly more men than women develop cancer. canadians over the age of account for the majority ( %) of cancer cases (canadian cancer society’s advisory committee on cancer statistics, ). for most types of cancer, advances in prevention, screening, and treatment have contributed to improved survival rates (kazanjian, smillie, howard, ward, & doll, ). the term cancer survivorship is used to describe a “distinct phase in the cancer trajectory that occurs between the end of primary treatment and recurrence or end of life” (doll, kazanjian, smillie, ward, & chasen, ). while , canadians are expected to die of cancer in , it is estimated that as of january , over , canadians are living with and beyond cancer (canadian cancer statistics advisory committee, ). this growing population of people living with cancer (i.e. cancer survivors, current and former cancer patients) has unique psychosocial needs (costanzo et al., ; doll et al., ; van der spek et al., ). psychosocial oncology is a specialty within cancer care that is concerned with understanding and addressing the psychological, social, emotional, spiritual, functional, and quality of life aspects of cancer (murph, ). a whole-person approach is used to provide optimal care for patients through the cancer journey, from prevention to bereavement (bultz & carlson, ; murph, ). although research on psychosocial oncology is relatively common in scientific journals and conferences, it is useful to unpack these terms before delving into the literature. the root, “psycho,” refers to aspects relating to the mind, mental states, or mental processes while “social” refers to people’s relationships with others (murph, ). “oncology” is the branch of medicine that is concerned with the prevention, diagnosis, and treatment of cancer. a related concept is supportive care, a key element of cancer survivorship that encompasses a broad range of services and interventions including the following: self-help and informational resources, support groups, spiritual care, and patient and family counselling (canadian cancer society’s advisory committee on cancer statistics, ; tighe, molassiotis, morris, & richardson, ). supportive care is not limited to a particular area of practice within cancer care, nor is it dependent upon the phase or type of cancer. instead, supportive care is an obligation of all cancer care professionals in demonstrating respect for a person’s inherent dignity (richardson, ). at the center of supportive care are the patients, as well as, the carers and family members of those affected by cancer, hence the continued growth of psychosocial interventions. the psychosocial oncology literature attests to the importance of social support as a buffer against the effects of stress, and the essential role of the mind and spirit in healing and recovering from cancer (bultz & carlson, ; dunkel-schetter, folkman, & lazarus, ). treatment for cancer is often accompanied by tremendous upheaval and uncertainty. yet, somewhat paradoxically, maintaining a treatment regimen also provides a level of consistency and certainty (canadian cancer society’s advisory committee on cancer statistics, ). during the survivorship phase, people often resume regular activities as they reflect upon their cancer experience. although ongoing support is available for some people, others may feel alone in their cancer experience (van der spek et al., ; yalom & josselson, ). for others, social support may decline as people have less contact with their health care team, and also perhaps, family members and friends. one constant that endures for many people in this journey is the companionship of a beloved pet. few people can match the level of dedication and unmitigated loyalty of pets toward their human caretakers. central to this extraordinary relationship is the experience of connection and validation (blazina, ). for people, being able to explore as well as express the meaning of their relationship with companion animals may bring new understandings of their cancer experience and survivorship experience; for health care providers, the agency to better address the needs of patients; and for researchers, improved interpretive power to understand the lived experience of people with cancer (blazina, ). different theories have been proposed to help account for why some people’s relationships with companion animals are so important for their health and well-being. before discussing the theoretical framework for the study, i describe key concepts surrounding the human-animal bond, noting definitions that are commonly found in the literature and clarifying my use of these concepts. next, i draw the reader’s attention to the concept of meaning-making and its pertinence to the cancer experience. . . the human-animal bond the relationship between humans and animals has been in existence long before the term, human-animal bond (hab), came into popular use (fine, ; hines, ). attributed to the ground-breaking work of konrad lorenz and boris levinson, the hab gained formal recognition in the s and s in academic reports and the mainstream media, soon working its way into the public consciousness (hines, ). an entire field of research known as anthrozoology is dedicated to the study of the hab (podberscek et al., ). interdisciplinary in its scope, anthrozoology encompasses a broad array of perspectives from business, the humanities, as well as, the natural, social, and applied sciences (hanrahan, ; vitztum, ). among the manifestations of the hab is the phenomenon of pet ownership, meaning the keeping of animals for pleasure and companionship (walsh, a). pets may be acquired through purchase or adoption, and often reside within or near their caretaker’s home. although service animals may cohabit with people, these animals are not considered pets from a legal standpoint (walsh, a). service animals are working animals and receive extensive training in order to provide assistance to people with disabilities, combat veterans, and law-enforcement personnel (pachana, massavelli, & robleda-gomez, ). although the terms pet and pet owner are widely used and understood by researchers and the general public, these seemingly benign terms belie the controversy surrounding their use (grier, ; walsh, a). some authors are critical of the term pet, arguing that its use signals a failure to recognize the animal’s inherent dignity and self-worth (sandoe, corr, & palmer, ). likewise, the term owner is considered to imply human mastery over non-human animals (skeen, ). views of animals as “less developed forms of life” once prevailed among behaviourists in the mid to late th century (skeen, ). even today, some purists would argue that objective assessment of animal behaviour is the only suitable subject matter for research (skeen, ). proponents of an alternate view prefer the terms companion animals and guardians or caretakers to refer to animals and people, respectively (mcnicholas et al., ; pachana et al., ). these terms are intended to highlight the emotional connection that some people share with animals, as well as, ethical concern for the welfare of animals (walsh, a). what is clear from the above discussion is that the terms used by researchers to describe animals are not inconsequential. while i agree that pet and companion animal are not equivalent, my use of the term pets is not intended to be demeaning or demoralizing. the very premise of this work is based upon my view of pets and people as being mutual partners in an authentic relationship (e. power, ; walsh, a). my interest in the potential well-being effect of pets for cancer patients should not be taken to imply that this is the only or most important part of the relationship. not all pets are considered companion animals, and not all companion animals are considered pets. firstly, people may care for and live in close proximity with pets and yet, may not experience the kind of emotional connection that exemplifies the human- companion animal relationship (walsh, a). secondly, people who are entrusted to care for animals may develop strong emotional bonds with them (e.g. wildlife, zoo animals), yet these animals would hardly be considered pets. horses are one such example for whom this distinction is not entirely clear, as horses can serve as companion animals, working animals, or both (keaveney, ; sandoe et al., ). in this study, the term pet is used in a broad manner to refer to animals that cohabit with and are cared for by people. the term companion animal is used when i wish to emphasize the emotional connection between pets and people. consistent with sandoe et al.’s ( ) conceptual framework, companion animals can be thought of as a “subset” of pets with whom people share a “special interactive bond.” the psychological and reciprocal nature of this bond is considered to be the key and defining feature of the human-companion animal relationship (sandoe et al., ). accordingly, i have chosen to focus upon cats and dogs, the most common household pets in north america (sandoe et al., ). moreover, considering that the focus of this study is on pet ownership among cancer patients, it would be a significant omission to overlook the role of pets in a therapeutic context (e.g. animal-assisted therapy, pets as detectors of disease), as much of the research with cancer patients has been conducted in this area (fleishman et al., ; marcus, b). some pets, given their temperament and disposition, are trained and certified to provide comfort to people in various settings (pachana et al., ; walsh, a). what follows is a brief explanation of the terminology used in research on animal-assisted interventions (aai). in the literature on aai, substantial variability exists in the terminology used by researchers and clinicians (fine, ; vitztum, ; walsh, a). different terms have been identified including animal-facilitated therapy, human-animal interaction, animal-assisted visits, pet mediated therapy, and pet visits (vitztum, ). the two most widely used terms are animal-assisted activity (aaa) and animal-assisted therapy (aat), both of which are subsumed under the broad heading of animal-assisted interventions (fine, ). aaa refers to interventions such as pet visits in which teams of therapy animals and their handlers visit patients in health care settings (bibbo, ). aaa varies in length and time, can be delivered individually or in a group, and often has no specific goals or objectives (wells, a). in contrast, aat is characterized as having explicit therapeutic goals and is designed specifically for a particular client or patient group to address social, emotional, and physical issues (urbanski & lazenby, ; walsh, a; wells, a). where possible, i have maintained this distinction to be consistent with other reports. as with other psychosocial interventions, current metrics for evaluating the success of aais rely upon measurable changes in psychological and behavioural variables before and after the intervention, in line with a positivist orientation (fleishman et al., ; johnson et al., ). the psychosocial oncology literature is replete with examples of this kind of approach, citing the need for larger sample sizes, improved standardization of interventions, and longer follow-up of participants (henry et al., ; johnson et al., ; s. k. smith et al., ). such aims are appropriate when seeking objective answers, but misplaced when attempting to understand aspects of human experience (e.g. relationships, meaning) that are largely subjective in nature. moreover, implicit in traditional models of cancer care is an assumption that the person is the agent of change and has the ability to exercise control over his/her environment and behaviour (giddens, ; pargament & mahoney, ). undeniably, there are many things that are beyond people’s control that can leave them feeling powerless and ineffective. the question becomes: how do people contend with the inherent tension arising from their attempts to exercise personal agency and the knowledge that there are limits to their control? in the work of giddens ( ), a person’s capacity to act independently (i.e. agency) is both constrained and facilitated by the rules and resources (i.e. structure) that make up the social system, in this case, the cancer care system. since structure and agency are thought to influence each other continually (giddens, ), it is conceivable that people going through cancer are not just passively accepting the rules surrounding them, but instead, are actively engaged in making-meaning through their everyday social practices. accordingly, people with a companion animal can produce new meanings or rules about their relationship with their companion animal (blazina, ), as well as, their cancer experience (e.g. spending time with my companion animal helps me heal). in the next section, i bring together perspectives on spirituality to help frame my discussion of meaning-making. meaning-making provides a unique lens through which the human-companion animal relationship can be explored in all of its richness and complexity. although meaning-making and spirituality are conceptually related, spirituality is more commonly used and accepted in psychosocial oncology and anthrozoology. . . meaning-making and spirituality in a socio-cultural context where images of death and suffering continue to pervade the minds of those impacted by cancer (bultz & carlson, ), the poignancy of the bond between a person and his/her companion animal is all the more striking. the experience of cancer may bring about a heightened awareness of a person’s priorities through his/her attempts to find meaning and connectedness with others, referred to by some authors as evidence of spiritual coping (baldacchino, borg, muscat, & sturgeon, ). though spirituality and its dynamic counterpart, spiritual coping, are burgeoning topics within the health fields (migdal & macdonald, ), the human-companion animal relationship has all but been ignored as a potential source of meaning and connectedness. seeking the companionship of an animal may itself be a form of spiritual coping (faver, ; skeen, ). despite its growing use and assessment in health care (frey, daaleman, & peyton, ), spirituality is a term that conjures up mixed reactions. some researchers regard spirituality as being too personal or private, and believe that the psychosocial aspects of illness are more suitable for empirical research (baldacchino et al., ). others remain doubtful of attempts to quantify spirituality, considering it misleading to describe spirituality as dichotomous or linear (i.e. one person is more spiritual than another) in nature (senreich, ). given these somewhat conflicting perspectives, spirituality has been conceptualized as a multidimensional and highly individualized phenomenon (carroll, ; migdal & macdonald, ; molzahn et al., ; senreich, ). one common approach to defining spirituality is to note its similarities and differences with religion. as with religion, spiritual practices can be undertaken individually or as part of a group. these phenomena are not mutually exclusive. people can see themselves as both religious and spiritual (pargament & mahoney, ). highlighting a customary distinction, pargament and mahoney ( ) define religion as “a broad individual and institutional domain that serves a variety of purposes secular as well as sacred,” and spirituality as “the key and unique function of religion” (p. ). furthermore, while some spiritual belief systems rest on the notion of the “unknowability of existence,” others presume that the nature of existence is in fact known (senreich, ; yalom, ). the intent in this chapter is not to stake claim to a singular and exhaustive definition of spirituality, nor to utilize spirituality as a thinly veiled guise for religion. spirituality is not always tied to religion. atheists and agnostics can have spiritual needs of their own (carroll, ). rather, the intent is to situate the present study in the context of research on psychosocial oncology, making clear my own assumptions and drawing upon concepts (e.g. meaning-making, spiritual coping) that have been formalized in research. in keeping with the spirit of phenomenology (i.e. bracketing my assumptions), my view of spirituality is similar to nontheistic approaches that emphasize humanistic, existential, and secular aspects of human experience (senreich, ). two themes that predominate in these approaches are meaning and connectedness (girardin, ; meezenbroek et al., ). for example, girardin ( ) describes spirituality as a “stabilizing force” that helps people stay connected to what is meaningful to them. connectedness is understood to refer to relationships with oneself, others, nature, and/or the transcendent (i.e. a higher power) (senreich, ). from these perspectives on spirituality, it is not hard to see the connection between the human-companion animal relationship and the humanistic theories (gestalt psychology, phenomenology, and existentialism), each of which has grappled with the question of what it means to be human (yalom & josselson, ; yontef & jacobs, ). these theories place emphasis upon genuineness, authenticity, empathy, unconditional positive regard, and active engagement in the here and now (yalom & josselson, ; yontef & jacobs, ), the very qualities that are often attributed to companion animals (walsh, a). within humanistic theories, meaning is considered to be a fundamental concern of human life, and people are construed as meaning-making beings (frankl, ; yalom, ). it appears that meaning- making even has a biological basis, such that people are naturally inclined to find a pattern or explanation when confronted with seemingly random stimuli (yontef & jacobs, ). in his memoir, frankl ( ) wrote that “the will to meaning” or “this striving to find a meaning in one’s life is the primary motivational force” of human beings (p. ). while it may appear that meaning is just out there in the world waiting to be discovered, such a view, according to frankl, masks the reality that life is without intrinsic meaning; people make meaning. likewise, yalom counts meaning as one of the inescapable concerns of the human condition, the others being freedom, isolation, and death (yalom & josselson, ). although loneliness is ubiquitous to human experience, existential isolation is understood more distinctively as a sense of “despair at living an unobserved life” (yalom & josselson, , p. ). for people, having others witness what they experience in life, helps to alleviate existential isolation (yalom & josselson, ). it is through these intimate connections with others that people may find solace in the face of stressful life events. however, intimate connections are not limited to those between people. many people describe experiencing a profound level of intimacy in their relationship with their companion animals (blazina, ; gavriele-gold, ). moreover, a paradox exists in that, although people can derive meaning from having intimate relationships with others, they may feel isolated at the same time (yalom & josselson, ). commonly observed among people coping with cancer (van der spek et al., ), this seeming paradox speaks to the relational dimension of meaning-making (blazina, ). people attribute meaning to their experiences and may seek out others to validate these meanings (neimeyer, burke, mackay, & van dyke stringer, ). in the case of companion animals, this kind of validation transcends words and language, and is believed to fulfill a need for attunement (bowlby, ). introduced here and elaborated upon in the next section (theoretical background), “attunement” refers to the experience of being in sync with how someone else is feeling and thinking, and reciprocating through verbal or nonverbal communication (blazina, ; lasher, ). although not a panacea for loneliness, the human-companion animal relationship embodies the experience of an “attuned relationship” (blazina, ; faver, ). interacting with a companion animal enables a person, however briefly, to be fully engaged in the here and now. these kinds of here and now experiences have been called mindful moments and kindred relaxation in the literature (faver, ). the notion that being more mindful can promote better health (nagasawa et al., ), perhaps an oversimplification, does not seem so far-fetched. the aim of finding physiological evidence to substantiate this notion falls within the scope of those working from a positivist lens. in contrast, my intent is to examine the meaning that constitutes lived experience, more precisely, the meaning of these here and now experiences as people live through them (van manen, ; yontef & jacobs, ). favouring authentic experience over contrived explanations, humanists are cognizant of the impact of using theories that can dehumanize the very people whose experiences and behaviours they are attempting to explain (yontef & jacobs, ). with this in mind, i extend my discussion of attunement in the next section. although not considered a theory itself, attunement is a foundational concept in attachment theory (bowlby, ; winnicott, ) and in a sub-discipline of social science known as relationship science (hazan & shaver, ). attachment theory is commonly applied to the human-companion animal relationship (beck & madresh, ; kurdek, ), emphasizing the primacy and universality of the attachment bond between infant and caregiver (bowlby, ). attunement is believed to operate at an even more fundamental level, providing the basis for developing strong affectional bonds with others throughout a person’s life (blazina, ). it seems that if attunement assists us in understanding the meaning of the human- companion animal relationship, in other words, the piece about meaning-making and connectedness, then a theoretical framework would be useful for exploring how people experience this relationship during periods of serious illness and recovery. originally proposed by o’leary and ickovics ( ), and subsequently expanded by carver ( ), one model posits that there are four potential consequences that can occur in response to adversity (i.e. physical or psychological stress): succumbing (continued decline), survival with impairment (diminished in some way), resilience (homeostatic return to previous level of functioning), and thriving (exceed previous level of functioning). carver’s model helps us to situate meaning-making and the human-companion animal relationship within the context of cancer. this is not to say that succumbing and survival with impairment are not possible outcomes. my intent is to move beyond the traditional emphasis upon the negative sequelae of a cancer diagnosis (carver, ; costanzo et al., ; laranjeira, ponce leão, & leal, ). . theoretical framework in this section, i discuss the following theoretical constructs: attunement, resilience, and thriving. i say theoretical constructs with two thoughts in mind. firstly, these constructs are distinguished from the phenomenon of interest—the meaning of the human-companion animal relationship for people with cancer. secondly, these constructs are not formal theories in the sense of social theories that can offer “a significant level of predictive power” and can “stand apart from empirical analyses as coherent explanations of social life” (pascale, , p. ). the task of the researcher is to develop a framework for identifying relevant phenomena. not only do researchers bring their theories and assumptions to their research, but these theories and assumptions are also embedded within the research process (pascale, ). to illustrate, carver’s ( ) model, with its emphasis on resilience and thriving, represents a departure from a traditional focus on impaired functioning and distress in people with cancer (costanzo et al., ). underlying my use of this model is a belief that some kind of gain or growth can follow from adversity. however, growth does not simply happen. people engage in meaning-making and this occurs within a relational context (berscheid & regan, ). . . attunement and relationship science acclaimed acting teacher, stella adler, whose vision of acting called for authenticity, once said: “it is against the nature of human life to withdraw” (riley, ). just as we are inclined to find meaning, we are biologically predisposed to develop strong affectional bonds with others (bowlby, ; hazan & shaver, ). people define themselves in relation to others (yontef & jacobs, ). relationship science tells us that close, satisfying relationships are essential to a person’s well-being (berscheid & regan, ), with some evidence of an association between the human-companion animal relationship and lower morbidity and mortality (campo & uchino, ; pachana et al., ). a relationship is satisfying to the extent that it meets a person’s needs among which attunement is regarded as a primary psychological need (bowlby, ; hazan & shaver, ; winnicott, ). being attuned or “in sync” with how someone else is thinking or feeling requires empathy (blazina, ; mensch, ). mensch ( ) describes empathy as experiencing “in the other’s body” or sharing the other’s embodiment. one of the predominant goals in the humanistic therapies is to help people develop greater empathy, curiosity, and concern for others (yontef & jacobs, ). the experience of being in sync with a comforting and responsive relationship partner is as much an element of the human-companion animal relationship as it is of interpersonal relationships (blazina, ; s.-e. brown, ). companion animals witness and participate in people’s lives, providing a psychological sense of accompaniment (blazina, ; winnicott, ). the dynamic of attunement permits meaningful interactions between people and companion animals (blazina, ). these interactions provide the foundation for the kinds of attachment bonds that are characteristic of the infant-caregiver relationship (blazina, ). companion animals, particularly dogs, have been described as attachment figures with whom people form strong emotional and psychological bonds (beck & madresh, ; kurdek, ). on some measures of attachment security, companion animals are rated more highly than romantic partners (beck & madresh, ). some researchers regard proximity seeking and maintenance as a form of attachment behaviour (bowlby, ). people often wish to be in close contact with companion animals, petting, grooming, and cuddling with them. companion animals provide a secure base from which a person can derive comfort when distressed (kurdek, ). a sense of purpose, of being needed, and of having a daily routine are all presumed to be influential in the development of attachment bonds with companion animals (beck & madresh, ; siegel, ). however, the extent to which the human-companion animal relationship qualifies as an attachment bond continues to be debated, with some authors suggesting that attachment is only one type of affectional bond among others (i.e. friendship), and is less pertinent to adult relationships (kobak, ). accordingly, some theorists continue to draw upon attunement for its broader scope with respect to lifespan development and to the establishment of different types of affectional bonds, from intimate relationships to formal relationships between people and health care providers (blazina, ; davis, ; lasher, ). our understanding of attunement is such that we recognize its importance for developing and maintaining satisfying relationships throughout a person’s life, yet we have little empirical understanding of its role in strengthening the human- companion animal relationship (blazina, ). the dynamic of attunement is manifest in people’s tendency to develop shared meanings, in other words, core beliefs about themselves and others that evolve through mutual engagement in daily practices and routines (neimeyer et al., ). these shared meanings may be disturbed or threatened in the experience of cancer (van der spek et al., ). however, losses and negative events do not necessarily invalidate the meanings people attribute to their experiences (laranjeira et al., ). such a view is consistent with carver’s ( ) model of resilience and thriving. although carver himself does not address how resilience and thriving might generalize to the human-companion animal relationship, his model helps us to understand the importance of having supportive relationships in the face of adversity. relationships can impact a person’s subjective experience without changing the objective situation; people may feel alone in their experience of cancer but not feel lonely. . . carver’s model of resilience and thriving central to the construct of thriving is the idea that some kind of benefit or gain can be derived from an experience which may carry forward to future experiences (carver, ; o’leary & ickovics, ). as with meaning-making, thriving may be elicited by a particular event or prolonged trauma but such an event or trauma is not required for thriving to occur (carver, ). thriving represents a kind of growth experience, and can be physical or psychological in nature. it is important to note that there are limits to both physical and psychological thriving (carver, ). in the case of physical thriving, for example, people who are in good health prior to an illness may eat better and exercise more, yet still not be as healthy as their pre-illness state. carver describes three kinds of psychological thriving: skill and knowledge development, confidence, and strengthened personal relationships. knowing more about a problem or stressor can help a person to manage his/her own emotions or deal with others more effectively. after going through a difficult experience, a person may come away with a renewed sense of confidence in being able to approach similar experiences in the future. having confidence makes it more likely that an individual will persevere when he/she encounters difficulties (carver, ). with regards to personal relationships, social bonds are strengthened when a person feels that he/she can turn to others for support when faced with an adverse event. these kinds of relationships are characterized by trust, security, and dependability (carver, ). possible outcomes of thriving include reduced reactivity (i.e. desensitization) to subsequent stressors or faster recovery (i.e. enhanced recovery potential) from stressors (carver, ). a third potential outcome of thriving is that a person is able to function at a level that is consistently higher than that prior to the event (carver, ). while such an outcome may be untenable, many researchers would agree that this is a subjective change, and is dependent upon one’s personal qualities (e.g. personality traits, coping responses) and unique life circumstances (e.g. availability of social support). thriving may be manifested as a change in one’s orientation to life or a move toward greater acceptance of oneself or others (carver, ). studies employing comprehensive psychosocial measures provide evidence that supports the construct of resilience, rather than thriving (costanzo et al., ). following cancer, some people experience a shift in their priorities and greater appreciation of being present and in the moment (molzahn et al., ; van der spek et al., ). for many, this meaning is tied to their intimate relationships (van der spek et al., ). whether these examples count as resilience or thriving remains to be seen. carver ( ) suggests that if we encourage people to view a particular situation as an opportunity for growth, growth is more likely to occur. and if we learn more about why people thrive, we can teach it to others and ultimately benefit the overall health care system. this sentiment is admirable and would certainly appeal to anyone who works with people whose lives have been impacted by cancer. encouraging resilience and supporting people in their efforts to thrive remain in the horizon of possibilities; so too does the possibility of making our experience richer. the latter possibility necessitates a shift in how we approach this kind of inquiry. rather than finding answers or drawing firm conclusions, phenomenology opens up a way of engaging with questions to provide qualitative insights into the meaning of a particular phenomenon (van manen, ). phenomenology offers a method of questioning that van manen ( ) describes as a “wondering pathos.” experiences that evoke a sense of wonder can lead to phenomenological questions about the nature and meaning of these experiences. for example, we might ask “what is this experience like?” phenomenology invites us to adopt a particular attitude and an “attentive awareness” to our experiences as we live them as opposed to how we conceptualize them (van manen, ). . phenomenological approach to the study perhaps, my aim in pursuing a phenomenological investigation of the human-companion animal relationship for people with cancer could be perceived as rather modest. everyday experiences are taken for granted, deemed simple, and less worthy of research attention (van manen, ). phenomenology shows us that these everyday experiences, however ordinary they might appear, are in fact much less simple than we would think. typically, our thinking stops at our words, concepts, and theories (e.g. relationships are important for our well-being, growth can follow from adversity), and less often do we consider how they shape our experiences as we live them (van manen, ). phenomenology helps us to go beyond the words, concepts, and theories to get back to the living moments of our experience in all of their richness and complexity. we can widen them, explore their nuances, and make them more precise. when people talk about their companion animal, they “call into being a certain relational quality” of the human-companion animal relationship that is meaningful to them (van manen, ). to take this example further, we seem to know what a companion animal is. yet, when pressed to define this concept more precisely, we are left with questions such as “do companion animals have to live in your home to be a companion animal, do they have to be furry or can they have feathers or scales, can a robot be a companion animal, so, just what is a companion animal?” in an earlier section, i spent four pages attempting to clarify what i mean by the terms pet and companion animal, and i used the terms attunement, resilience, and thriving to help explain why some relationships are especially meaningful and rewarding in the experience of cancer. still, these are the words and concepts, which we must continually push through to understand the meaning of lived experience. again, phenomenology is less about the search for answers to these kinds of questions than it is about our openness and attentiveness (i.e. wondering pathos) in conducting our inquiry (van manen, ). most of us know someone who has been affected by cancer, directly or indirectly. as such, we may have certain assumptions about what it’s like to have cancer or to have lived through the experience of cancer. but where does this experience really begin and end? what would it be like, instead, to ask about the experience of being a pet owner or companion animal caretaker for someone living with and beyond cancer? in a practical sense, we can call people cancer patients, former cancer patients, cancer survivors, and people with cancer. we can specify the type of cancer a person has and his/her stage of cancer. regardless of the words we use, certainly we can agree that having cancer carries some kind of lasting significance. the words in a sense prevent us from engaging with the world as we experience it. however, it is through words that we can access these experiences (van manen, ). this study is essentially a “wondering” exploration of relationships in the context of adversity. the human-companion animal relationship tends to be overlooked, in some cases, for the lack of a shared language (i.e. spoken or written) of the kind that occurs between members of the same species (hirschman, ; sanders, ). we don’t really know if our companion animals experience things the way that we do. yet, we can experience such intimacy in our relationships with them, in the absence of words. gavriele-gold ( ) argues that we have this kind of intimacy with companion animals precisely because they do not speak to us the way that people do. they don’t say things to hurt our feelings. they don’t give unwanted advice. companion animals “keep their silence, yet they bear witness” to our life (gavriele-gold, , p. ). furthermore, companion animals are rendered meaningful to us through our bodily engagement and social interactions with them. van manen ( ) refers to this experience as the kind of embodied knowledge that helps us navigate daily life. we experience this knowledge as if it simply resides in our body and, thus, it is difficult to put into words. for example, we know how much pressure to apply when turning a doorknob, and we know how to shift our body to stay balanced as we are walking. for a phenomenological human science, the body is not simply a transmitter of the physical world but rather constitutes what is meaningful to us (merleau-ponty, ). much of positivist science, by contrast, is built upon the idea that we know how things are in reality, and there tends to be a distrust of the body (i.e. our senses can lead us astray) (van manen, ). the separation of the mind (i.e. subject) and the physical reality (i.e. object) is prominent in cartesian dualism whereas phenomenology treats the body as a vehicle rather than a barrier to acquiring knowledge. phenomenology invites us to consider how our experience might change if we let go of our belief that we know how things are in reality. it is precisely this kind of knowing and not knowing and the “impossibility” of it all (van manen, ) with which we have to grapple when inquiring into the following research question: what is the lived experience of the human-companion animal relationship for people with cancer? chapter : literature review this chapter outlines the results of a narrative review of literature on the meaning of companion animals for people living with and beyond cancer. the main emphasis in this review is on pet ownership that occurs through purchase or adoption, with some attention given to the therapeutic role of companion animals. along with the primary and secondary literature, the review includes qualitative and quantitative research conducted in both clinical and non-clinical settings (bratzke et al., ; mays, pope, & popay, ; schaepe & bergjan, ). the literature search strategy is described in an appendix to this chapter (appendix a). as displayed in figure , most empirical research has tended to focus on the areas where each pair of circles intersects. however, the area in the center of the figure, where all three circles intersect, is still relatively new in psychosocial oncology. figure intersections identified in the literature in the discussion that follows, i present the findings of this narrative review as i draw upon the works of key authors and additional sources identified through a search of reference lists. this review is divided into three main sections: ) pets and human health, ) human health and spirituality, and ) pets and human spirituality. pets [companion animals] spirituality [meaning- making] human health [cancer] . pets and human health . . salutary effects of pets the evidence base on pets and human health is mixed with some reports indicating substantial benefits from owning a pet, others suggesting no difference in health between pet owners and non-owners and, still others finding poorer health outcomes among pet owners (cherniack & cherniack, ; siegel, ; virués-ortega & buela-casal, ; wright, kritz-silverstein, morton, wingard, & barrett-connor, ). some investigations are affected by methodological limitations such as small sample sizes, confounding variables, and insufficient follow-up (siegel, ; wells, b). nevertheless, research on the human-pet relationship lends empirical support to a widely held belief that pets are good for us (becker & morton, ; vitztum, ; wells, b). benefits observed among pet owners include the prevention of illness and the promotion of mental and physical health (cherniack & cherniack, ; friedmann & tsai, ; knight & edwards, ; wells, b). health benefits appear to be more prevalent, although not exclusively, among dog owners, and are often attributed to greater physical activity and social engagement provided by dog-walking (cherniack & cherniack, ; knight & edwards, ; siegel, ; wells, b). much of the existing research is aimed at older adults and children, with the strongest evidence provided by studies examining the impact of pets on a patient’s likelihood of survival in the aftermath of a cardiac event (friedmann, katcher, lynch, & thomas, ; friedmann, thomas, stein, & kleiger, ; friedmann & thomas, ). in their study of patients (n= ) who survived a heart attack, friedmann et al. found that pet owners experienced greater longevity compared to non-owners. one proposed reason for this difference is the performance of activities of daily living (adl) associated with pet care responsibilities (e.g. feeding, walking their pet). follow-up investigations (friedmann & thomas, ; friedmann et al., ) and subsequent analyses revealed that the greatest benefits were achieved by dog owners. these results, however, could not be attributed solely to an increase in physical activity associated with having a dog. the authors point to greater heart rate variability observed among pet owners as a possible explanation, citing the finding that lower heart rate variability is linked to cardiovascular disease and mortality (friedmann et al., ). other proposed physiological mechanisms include positive changes in neuroendocrine functioning (i.e. increase in oxytocin, decrease in cortisol) that occur when interacting with pets (horowitz, ; odendaal, ). in one study, researchers found that gazing behaviour from dogs was followed by an increase in the concentration of urinary oxytocin in the owners of the dogs (nagasawa et al., ). the hormone oxytocin is involved in empathy, social bonding, and maternal behaviour (horowitz, ). the release of oxytocin in the dog owners then stimulated affiliative responses (i.e. tactile interaction) from them toward their dogs. this, in turn, resulted in an increase in urinary oxytocin in the dogs who were being talked to and petted by their owners. the results provide evidence of an “interspecies oxytocin-mediated positive loop” which is facilitated by mutual gazing behaviour that developed through the coevolution of dogs and humans (coren, ; nagasawa et al., ). such modes of communication appear to be deeply engrained in human-dog bonding, and are absent in interactions between humans and wolves, dogs’ closest genetic relatives (coren, ; nagasawa et al., ). laboratory experiments are instructive, finding reduced physiological reactivity among pet owners compared to non-owners (allen, blascovich, & mendes, ; horowitz, ; wells, b). in a study of dog owners (n= ), participants were randomly assigned to one of three support conditions: companion dog present, close friend present, or alone (campo & uchino, ). for each condition, participants’ cardiovascular reactivity was measured while completing a mental arithmetic or cold pressor task. the results indicated that the participants’ blood pressure and heart rate was lower in the companion dog condition than in the close friend condition. these findings held across the type of stressor and were observed during and after the task, suggesting that pets not only minimized the effects of stress but also facilitated recovery from stress. the authors speculated that evaluation apprehension (i.e. concern about being evaluated) could help to explain the finding of higher cardiovascular reactivity in the close friend condition, despite receiving positive ratings (campo & uchino, ). somewhat surprisingly, the responses of participants performing the task alone did not differ substantially from those who were accompanied by their companion dog. it is conceivable that simply knowing that their dog was nearby, if not in the same room, helped to alleviate distress. there did not seem to be a relationship between participants’ appraisals of their relationship with their dog and their friend, thus, confirming previous findings that pets provide a unique source of support that adds to rather than replaces human companionship (brooks et al., ; walsh, b). . . therapeutic effects of pets the practice of integrating animals into therapeutic interventions for people, is certainly not new (fine, ). founded in the th century, the york retreat in england was one of the first psychiatric facilities to record the benefits of interacting with an animal for patients with a mental illness (fine, ). the first documented report of cancer patients receiving pet therapy in the form of weekly visits from cats and dogs, was a study in a new york city hospice with participants (muschel, ). following the -week intervention, participants exhibited decreased anxiety and despair. in the + years since this report, a growing number of hospitals and cancer clinics have implemented programs involving visits from therapy animals who are trained and certified to provide comfort, stress relief, and companionship (horowitz, ; johnson et al., ; wells, b). as noted in chapter , the term, animal-assisted therapy (aat), is used to refer to structured sessions with a therapy animal that are designed to achieve specific therapeutic goals (e.g. reduce depression) (urbanski & lazenby, ; wells, b). however, aat is used by some authors to describe unstructured visits with therapy animals in hospitals and health care settings (baun & mccabe, ). the terms animal-assisted activities (aaa) and animal-assisted visits (aav) are also used to describe therapy animal visits, leading to confusion and a lack of agreement in the literature (fine, ; vitztum, ). to be consistent with the original reports, various abbreviations (e.g. aat, aaa, aav, etc.) are used in this section to refer to the therapeutic functions of animals. researchers in one investigation explored the benefits of animal-assisted activities (aaa) for patients undergoing chemotherapy at a cancer infusion center (marcus, blazek- o’neill, & kopar, ). the dog-handler teams spent a total of hours visiting with participants ( at the cancer infusion center; in other areas of the hospital). in response to a satisfaction survey ( . % response), participants reported improvements in various cancer- related symptoms such as enhanced relaxation, mood, sleep, attitude, and appetite, and decreased anxiety, stress, pain, and isolation. over % of participants reported a positive response to the dog visits with . % expressing an interest in future dog visits, and . % indicating that they would recommend aaa to someone else (marcus, a; marcus et al., ). most participants rated the dog visits as having much or great benefit as indicated by the selection of or on a five-point scale. twenty-eight of the participants reported currently having a dog of their own. there were no significant differences in the results pertaining to gender, location in the hospital where they received aaa, current pet ownership status, and identification with being a dog person. only a few participants ( . %) receiving treatment at the cancer infusion center expressed concern about the potential for germs introduced by dogs. in a similar investigation, researchers tested the efficacy of animal-assisted visits (aav) for patients (n= ) with head and neck cancer who were receiving combined chemotherapy and radiation therapy (fleishman et al., ). the participants’ quality of life (qol) was assessed at baseline, week , and week using a reliable measure (fact-g). satisfaction with aav was also measured. the results indicated that there was a statistically significant and clinically meaningful increase in emotional well-being (ewb) and social well-being (swb), in spite of moderate to high symptom burden and declines in physical well-being (pwb) and functional well-being (fwb). satisfaction with the intervention increased during treatment and remained high at the end of the intervention. according to the qualitative data, the dogs were instrumental in providing unconditional love and acceptance (fleishman et al., ). changes in participants’ outward appearance did not seem to matter to the dogs who were simply happy to see them. dogs and handlers were perceived as being helpful and supportive (bibbo, ; fleishman et al., ). however, participants felt that visits with volunteers would have been awkward without the dog being present. a few participants reported maintaining contact with the dog-handler team after the study. despite the use of a valid and reliable qol measure, there were some methodological challenges. the participants were self-selected and, therefore, may have espoused favourable attitudes toward animals regardless of the effects of the intervention. it was not feasible to use random assignment due to practical considerations such as participants’ schedules and preferences for animal visits. in any case, these study-related limitations are unlikely to pose a challenge when implementing aav in clinical settings where the uniformity of methods and procedures are less of a concern for clinicians (fleishman et al., ). the results of a post-test study provide additional evidence of the efficacy of aaa for cancer patients (johnson et al., ). thirty adult patients receiving radiation therapy were randomly assigned to one of three conditions: dog visits, human visits, or quiet reading sessions over a week period. participants were caucasian, with the exception of two participants who were african american. there were ten participants in each condition. the following hypotheses were tested: participants in the dog visits group would experience less fatigue and improved mood, self-perceived health, and sense of coherence ( ) following the intervention, and ( ) in comparison with the other two conditions. sense of coherence refers to a person’s capacity to manage stressful life events and retain a sense of meaning and understanding when encountering difficulties. each condition consisted of minute sessions (i.e. received a magazine or a visit from a dog or human alone) delivered three times a week for four weeks. participants received the session before their radiation treatment. in contrast with the studies described above (fleishman et al., ; marcus et al., ), the handlers were instructed to avoid talking to participants apart from the initial session in which they were asked to introduce the dog and monitor his/her behaviour and how the session went. participants receiving visits from therapy dogs reported improvements in their health over the four week period (johnson et al., ). dogs helped to relieve anxiety and distract participants from their illness. those in the dog therapy group experienced an increase in anger/hostility, confusion, and depression scores, although these changes were non-significant. as well, there were no statistically significant differences between the groups with regards to age, gender, race, education, or cancer site. given the small sample size, replication is warranted with a larger and more diverse sample, and a longer follow-up period. another limitation of the study was the absence of information about disease progression or the side effects of radiation therapy during the four-week period. it is possible that the participants’ condition worsened during treatment, thus, affecting the validity of the findings. contamination was also a potential issue as participants could have discussed the intervention while talking to others in the waiting room. future research could benefit from controlling the stage and type of cancer, as well as, having additional measures of mood such as neurochemical changes in response to aaa. findings from systematic investigations provide evidence that aaa can be a valuable addition to supportive care interventions for cancer patients and their families. some reports suggest that aaa confers similar benefits for health care providers who work with cancer patients (marcus, a). in one quasi-experimental study, researchers found that the staff (n= ) of an outpatient cancer center generally viewed aaa positively. the dog visits did not add extra stress or work for the staff who agreed that aaa should continue at this facility (bibbo, ). despite the potential benefits of aaa for health and well-being, research on cancer patients is still limited and some questions remain unanswered. more research is needed to determine the optimal timing and length of aaa sessions, as well as, understand the impact of disease severity on the effectiveness of aaa (bibbo, ). standardized terminology with clear definitions is needed to advance theoretical and applied research (vitztum, ). all in all, the findings suggest that aaa through volunteer services represent a cost- effective and therapeutically effective intervention that can complement medical care (marcus et al., ). when properly trained, therapy animals are seen as friendly, approachable, calming, and nonjudgmental (walsh, b; wells, b). as social catalysts, therapy animals provide support, eliciting physical touch and sociability from people (fine & eisen, ). aaa can empower patients to retain a sense of control in managing their illness, treatment, and ensuing side effects (johnson, meadows, haubner, & sevedge, ). although patients may wish to visit with therapy animals and report benefits from interacting with them, obtaining valid and reliable measures of these outcomes remains a challenge (bibbo, ; franklin et al., ; johnson et al., ). however, as fine and eisen ( ) warn, if we were to focus exclusively on documenting measurable outcomes, we would miss the “magic” or “brilliance of the process” that is found in the daily interactions between animals and people. . . companion animals and cancer at the intersection of pets and human health (figure ), there is limited research on how pet ownership impacts health when it comes to cancer. similarly, despite burgeoning research on the therapeutic effects of animals for people with cancer, there is a dearth of studies on the experiences of cancer patients and their companion animals (johnson et al., ; nitkin, ). a search of the literature revealed a relatively large volume of research reports on comparative oncology, veterinary oncology, and animal-assisted interventions. from the articles retrieved, only focused on the topic of companion animals and cancer. of these, five were written by the same two research teams, and their primary objective was to evaluate the impact of animal- assisted therapy rather than pet ownership. only one published study (larson et al., ) and an unpublished dissertation (nitkin, ) were identified that specifically addressed the experiences of cancer patients and their pets. the purpose of the study was to assess the need for community and financial resources among cancer patients with pets. participants (n= , median age= ) were asked whether they had concerns about being able to care for their pets, and if they needed more information on pet-related resources. of the participants (median age= , % women) surveyed, had at least one pet, with dogs and cats being the most common type of pet. most of these participants ( %) reported having support from family members to care for their pet following their diagnosis. participants indicated a high level of attachment to their pets, and believed that having a pet provides health benefits. a small percentage ( %) of participants had concerns about being in contact with their pets while in treatment. only one participant reported giving up a pet because of a cancer diagnosis, and two participants chose not to acquire another pet due to their illness. participants reported having concerns about lifting their pets while recovering from treatment, caring for pets with health problems, and having to limit their exposure to farm animals due to the risk for infection. aside from these concerns, participants tended to emphasize the benefits of having a pet. pets were described as being able to intuit when participants were stressed or ill. pets helped participants heal and manage stress. overall, the findings suggest that cancer patients benefitted from their pet’s companionship and had few concerns regarding the care of their pet during cancer treatment (larson et al., ). although only a small number of participants were in need of information on pet-related community and financial resources, the results may not represent the experiences of patients who lack similar resources. in the study, participants were receiving treatment at a tertiary care center. it is possible that these patients already had social support and resources that enabled them to manage their pet’s care without additional intervention. nevertheless, providing patients with information about pet shelters, legal resources, and veterinary care may go a long way to reducing anxiety from not being able to care for one’s pet while undergoing treatment (larson et al., ). simply inquiring about pets during routine assessments may help to improve patient-provider communication (walsh, c; wisdom, saedi, & green, ). to illustrate, dr. edward creagan, a professor of medical oncology at the mayo clinic, regularly records the names of his patients’ pets in their medical charts, and even “prescribes” pets as part of their treatment plan (horowitz, ). other investigations that lie at the intersection of pets and human health have examined the potential role of companion animals as a diagnostic tool for cancer detection (wells, ). dogs, given their olfactory acuity, are able to identify compounds in breath, sweat, and urine that are indicative of illness (marcus, b; wells, ). this research has been motivated in part by the limitations of traditional screening methods which tend to be invasive, painful, and expensive. in any case, further research is needed to establish the extent to which dogs can identify the presence of cancer as opposed to ill health in general (wells, b, ). the use of small sample sizes and variations in the way that odour compounds are collected make it difficult to draw conclusions about the specificity with which dogs can detect cancer (wells, ). a second area in which pets have been discussed in relation to cancer patients is the risk of interacting with pets among people who are immunocompromised (e.g. young children, pregnant women, older adults) (larson et al., ). the authors of one review indicate that concerns regarding the spread of zoonotic infections (i.e. disease transmitted from animals to humans) are unwarranted (stull, brophy, & weese, ). these infections are relatively uncommon among pet owners and are minimized considerably by the use of proper handwashing (marcus et al., ; stull et al., ). in some cases, pets, rather than people, may be at risk for becoming colonized with human pathogens (marcus, b). in summary, the management of cancer requires a comprehensive approach to address the needs of patients for physical, medical, informational, emotional, social, and spiritual support (marcus, a; mccorkle et al., ). empirical research on animal-assisted interventions represents an important step in validating anecdotal claims among cancer patients regarding the benefits of interacting with therapy animals. however, research on the experiences of cancer patients and their own pets is currently lacking. efforts to improve patient engagement require a broader understanding of the daily activities in which people invest their time and energy (raque-bogdan et al., ). examining social occupations such as caring for a pet can provide insights into how cancer patients integrate their illness and survivorship status into their identity (brooks et al., ). being a pet owner is one such identity that speaks to the experience of living meaningfully in the face of a life-threatening illness (girardin, ; wisdom et al., ). . human health and spirituality . . cancer and spiritual coping coping is defined as the thoughts and behaviours that people use to manage stress (folkman & lazarus, ). problem-focused coping refers to a person’s attempts to change or confront a stressful situation (bigatti, steiner, & miller, ; folkman, lazarus, gruen, & delongis, ). emotion-focused coping refers to a person’s attempts to regulate emotional distress through distraction or avoidance (folkman et al., ; waldrop et al., a; wenninger et al., ). spiritual coping, a type of emotion-focused coping, involves attempting to change or redefine the subjective meaning of a situation, for example, by searching for a larger purpose or reason (molzahn et al., ; vachon, ; waldrop et al., a). although it is generally accepted that particular coping strategies can contribute to an enhanced sense of inner peace and contentment (girardin, ; laranjeira et al., ; pargament & mahoney, ), there is little consensus about what to call these strategies. both spiritual coping and meaning- making are found in the literature, along with other terms such as existential coping (baldacchino et al., ; migdal & macdonald, ). the link between spirituality and health is such that spiritual coping may lead to improved well-being and quality of life for some people, and greater distress in others (molzahn et al., ; vachon, ; visser, garssen, & vingerhoets, ). moreover, while spiritual coping has particular relevance for some people in dealing with a serious illness, for others, spiritual coping is of little to no consequence. in the study of spiritual coping and cancer, considerable attention has been given to end- of-life issues among palliative care patients, dealing with advanced disease and diminished quality of life (trevino, balboni, zollfrank, balboni, & prigerson, ; j.-s. tsai et al., ). however, existential distress is not unique to those in palliative care (girardin, ). accordingly, there has been greater movement towards studying the spiritual resources, meaning-making processes, and coping strategies used by people in other stages of cancer survivorship (boehmer, luszczynska, & schwarzer, ; carroll, ; laranjeira et al., ). for example, investigators in one study examined the spiritual practices and spiritual well-being of women (n= ) with gynecologic cancer using quantitative measures (a. j. lopez, mccaffrey, quinn griffin, & fitzpatrick, ). overall, the participants reported high levels of spiritual well-being, self-efficacy, and life scheme (i.e. meaningfulness). the most common practices endorsed by participants as having a spiritual quality were taking part in family activities, listening to or playing music, exercising, and helping others. participants less often used meditation, yoga, or communal prayer to express their spirituality. these results lend support to the notion of spirituality as something that gives a person a sense of meaning and purpose in life, while also highlighting the challenges of determining how best to conceptualize spirituality (frey et al., ; a. j. lopez et al., ; pargament & mahoney, ). the extent to which research terminology used resonates with participants’ experiences is not only a concern of studies that employ quantitative methods. in a qualitative study by molzahn et al. ( ), participants reported feeling uncomfortable using the word spirituality, believing that it was too closely aligned with religion. instead, participants preferred using metaphors and talking about their attempts to find meaning in their illness through their relationship with their children, partner, pets, music, and nature. the goal of the study was to examine the spiritual stories of people (n= , men and women) living with serious illness (e.g. cancer, end stage renal disease, and hiv/aids). in-depth narrative interviews were conducted with participants ranging in age from to . three major themes were identified: reflecting on spiritual relationships and personal beliefs, crafting beliefs for one’s own life, and finding meaning and transcending beyond words. examples of spiritual practices included visualization, gardening, and therapeutic touch. participants reported experiencing a deepening of spirituality that evolved from a blend of religious and non-religious beliefs. the results indicated that, despite researchers’ efforts to distinguish between religion and spirituality (frey et al., ), few people tended to make this distinction (molzahn et al., ). such findings alert researchers and practitioners to the importance of engaging with participants in their own terms (molzahn et al., ). labeling something “spiritual” or “religious” may actually inhibit participants from discussing their beliefs. accordingly, non- traditional research methods have been proposed, including arts-based approaches, photography, story-telling, and meditation (harper, ; molzahn et al., ; tighe et al., ). another issue raised by research on spiritual coping is the need for larger and more diverse samples (jim et al., ; a. j. lopez et al., ). some studies rely upon convenience sampling, yielding self-selected and homogenous samples with characteristics that may not be applicable to other patient groups or the general population (molzahn et al., ). in view of these limitations, the findings of cross-cultural research are instructive for understanding the needs and experiences of underrepresented cultural and ethnic groups (k. ashing-giwa & ganz, ; chang et al., ; molassiotis et al., ; j.-s. tsai et al., ). in this brief sampling of studies, positive and negative aspects of spiritual coping are discussed. in an investigation of the psychosocial needs of african american women with breast cancer, researchers found that participants often drew strength from their spiritual faith (k. ashing-giwa & ganz, ). a total of participants were interviewed using key informant interviews, focus groups, and in-depth interviews. key informants referred to patients as “uninvolved victims,” explaining that patients tended to be passive and had less control over their illness compared to people in “mainstream society.” patients were inclined to accept medical treatment without questioning their doctors’ recommendations or requesting a second opinion. patient interviews confirmed key informant views of patients as being less active in managing their illness. patients reported experiencing psychological distress, employment challenges, and a lack of information and support during their diagnosis and treatment. additional barriers included a lack of medical insurance and poor relationships with doctors. for these women, their primary source of support and coping was their spiritual beliefs (k. ashing-giwa & ganz, ). having a child also motivated them to get better. a number of women reported that their attendance at church increased following their cancer diagnosis. some women were reluctant to seek medical help, instead relying upon prayer as an antidote to cancer. similar findings were reported in a study of chinese women for whom it was not uncommon to avoid seeking medical care with or without a confirmed cancer diagnosis (chang et al., ). the researchers speculated that having a high level of spiritual support may have contributed to delays in cancer detection (chang et al., ). such findings highlight a potential risk of spiritual or religious coping among people who rely upon their faith to the detriment of receiving timely medical care (k. ashing-giwa & ganz, ). nevertheless, it should be noted that, in both studies, having a deep spiritual faith motivated patients to heal and recover from their illness (k. ashing-giwa & ganz, ; chang et al., ). another notable finding from the studies discussed above is the view of cancer as being a private matter, and, for some individuals, a “punishment” from god (k. ashing-giwa & ganz, ; chang et al., ). such beliefs, referred to as negative religious coping (nrc), may be accompanied by an experience of being in conflict with god or disconnected from one’s spiritual life and community (trevino et al., ). nrc is associated with poorer quality of life and life satisfaction, as well as, greater depression and suicidal ideation (trevino et al., ; yeung, lu, & lin, ). assessments of nrc may be helpful for identifying people who are vulnerable to spiritual distress and suicidal ideation (trevino et al., ). moreover, examining spiritual coping can help researchers understand how people make sense of traumatic or critical life events (k. ashing-giwa & ganz, ; yeung et al., ). in another investigation, researchers surveyed latina women (n= ) with breast cancer about their use of spiritual coping (garcía-jimenez et al., ). the researchers examined the role of spiritual well-being as a potential mediator in the relationship between cancer self- efficacy (i.e. belief in one’s ability to deal with cancer) and self-rated health. spiritual well-being was assessed using a measure that includes religious (i.e. faith) and non-religious (i.e. inner peace) aspects of spirituality. the results indicated that inner peace was independently associated with better self-rated health (or= . , % ci . , . ). once inner peace was accounted for, there was no longer a significant association between faith and self-rated health. the researchers concluded that inner peace (i.e. meaning or purpose in life) was an important contributor to the health and well-being of participants. however, with less than one-third of the sampling frame included in the study, the results may not be representative of other groups of cancer patients. still, the findings have implications for women who are at increased risk of psychosocial distress due to ethnic and language disparities (garcía-jimenez et al., ). routine distress screening and interventions that promote meaning and purpose, discussed next, may go a long way to improving cancer self-efficacy and overall health (garcía-jimenez et al., ). by offering culturally competent care, health care providers can address the spiritual and existential needs of patients, as well as, instill hope for patients coping with institutional barriers and inadequate resources (k. ashing-giwa & ganz, ; chang et al., ). . . cancer and meaning-focused coping meaning-focused coping refers to strategies that people use to help make sense of their experiences and promote meaning in life (mil) (boehmer et al., ; jim et al., ). according to one conceptualization, mil is comprised of three dimensions: ) satisfaction with one’s relationships and contributions to the world, ) beliefs and values pertaining to one’s life and how well these are integrated, and ) beliefs about life as being part of a pattern beyond one’s individual life (jim et al., ). meaning-focused coping strategies that involve the use of avoidance, denial, or blame can undermine a person’s long-term adjustment to illness (jim et al., ; yeung et al., ). despite providing temporary relief, strategies such as ignoring one’s illness or avoiding one’s emotions are less conducive to deriving meaning from an experience such as cancer (boehmer et al., ; yeung et al., ). conversely, meaning-focused strategies that support a person’s view of the world and him/herself can help to preserve mil (jim et al., ). examples of these strategies are acceptance, positive reinterpretation, information and support seeking, and prayer (boehmer et al., ; costanzo et al., ). accepting or reframing a situation in a more positive light can be beneficial in situations over which people have little control (boehmer et al., ). rather than attempting to change the situation, people can manage their emotional response to the situation, leading to greater self- efficacy and control (costanzo et al., ). in a longitudinal study, researchers assessed the coping strategies of women diagnosed with breast cancer (n= , m age= ) at the time of their diagnosis, and assessed mil two years later (jim et al., ). the meaning in life scale (mils) was used to measure the impact of a cancer diagnosis on participants’ reported mil. hierarchical multiple regression analyses revealed that participants’ coping ability at diagnosis was a significant predictor of the variance ( %) in mil at the year follow-up assessment. these relationships remained significant after controlling for depressive symptoms and cancer-related stress at diagnosis. coping variables accounted for to % of the variance in mil. the results confirmed the original hypothesis that coping strategies have a long-term effect on mil. participants who tended to reframe negative events in a more positive light were able to find greater meaning and purpose from these events. it was unclear from the results whether mil should be thought of as a trait that is stable or variable in response to major life events. sources of mil and the types of coping strategies that people use often differ based upon their unique life circumstances and associated challenges (boehmer et al., ; dunkel-schetter et al., ; jim et al., ). to shed light on the effectiveness of different coping strategies, researchers in one study examined the perceived self-efficacy and coping ability of cancer patients (gastrointestinal, colorectal, and lung cancer) at one and six months after surgery (boehmer et al., ). also assessed was the influence of social support, both actual (i.e. received) and perceived (i.e. expected), on participants’ adjustment to cancer (boehmer et al., ). greater perceived self- efficacy was associated with lower stress and depression and greater use of meaning-focused coping strategies. participants who used meaning-focused strategies tended to have a positive outlook and saw themselves as capable of dealing with difficult situations (boehmer et al., ). in terms of actual support, receiving assistance with managing their disease and recovering from cancer treatments helped to alleviate depression and enhance participants’ emotional well-being. the results also showed a significant association between perceived support and emotional well-being. the findings should be interpreted with caution considering the heterogeneity of the sample (i.e. differences in diagnosis, site and stage of cancer) and the lack of information regarding the refusal rate. interestingly, some researchers have described perceived support as a personality trait or feeling of attachment (sarason, pierce, & sarason, ), meaning it can vary between individuals or within the same individual over time. it remains to be seen whether these constructs (e.g. meaning in life, perceived support, and coping ability) should be thought of as stable or variable in nature. the coping strategies that people ordinarily rely upon may not be as effective when dealing with the tasks of cancer treatment (boehmer et al., ). in response, interventions have been developed and tested with cancer patients to help them learn coping strategies that can improve psychosocial adjustment to cancer (boehmer et al., ; henry et al., ; reynolds & perrin, ; s. k. smith et al., ). to illustrate, meaning-focused interventions (i.e. the meaning-making intervention), designed specifically to address existential issues, have begun to fill an important gap in supportive cancer care research (harper, ; lee, robin cohen, edgar, laizner, & gagnon, ). followed is a brief discussion of these intervention studies. using a prospective single-arm pilot study, researchers evaluated the pathfinders program in a sample (n= , m age= . ) of women with advanced breast cancer (s. k. smith et al., ). developed by social workers, the pathfinders program is a strength-based model designed to enhance participants’ coping skills and resilience. the program helps participants to identify their inner strengths and establish a self-care plan. over a period of six months, the participants completed assessments to evaluate changes in various resources (e.g. coping, social support, spirituality, self-efficacy, and optimism) and outcomes (e.g. despair, distress, qol, and fatigue). multiple linear regression analyses indicated that participation in the pathfinders program was associated with lower distress and improved quality of life, adjusting for demographic characteristics. improvements in distress correlated significantly with enhanced coping, social support, spirituality, and self-efficacy. despite finding positive outcomes in the areas targeted by the program, there were some limitations including the small sample size, lack of a control group, and reliance on correlational data. in one randomized controlled trial, researchers examined the efficacy of the meaning- making intervention (mmi) for newly diagnosed breast and colorectal cancer patients (lee et al., ). the mmi is intended to address existential issues by facilitating the development of meaning-focused coping strategies. consisting of one to four individualized sessions, the mmi involves the discussion of beliefs about faith, religion, and spirituality. journaling and guided imagery are used to explore the meaning of emotional and cognitive responses to cancer, in the context of previous life events and future goals. in the study, participants were stratified by cancer site and randomly selected to receive usual care (n= ) or four sessions (n= ) of the mmi. patients with a diagnosis of brain metastases or psychiatric history were excluded from the study. the participants were asked to complete measures of self-esteem, optimism, and self- efficacy at and months. controlling for baseline scores, the experimental group showed significantly higher levels of self-esteem, optimism, and self-efficacy compared to the control group (lee et al., ). baseline levels of self-efficacy were not significantly different from the general population. compared to participants, non-participants were older, less educated, and had lower incomes. subgroup analyses comparing breast and colorectal cancer patients were not possible as the final sample consisted mostly of women with breast cancer. researchers in a subsequent investigation sought to evaluate the acceptability and usefulness of the mmi for newly diagnosed (stage iii or iv) patients with ovarian cancer (henry et al., ). in this pilot study, participants were randomized to the experimental (n= ) and control group (n= ). the experimental group received usual care plus the mmi, and the control group received usual care and were placed on the wait list for the mmi. the participants’ level of fatigue was an important determinant of the pace and frequency of the intervention which ranged from to minutes. each session was intended to facilitate participants’ self-exploration regarding existential or spiritual dimensions of living with cancer. the primary outcome of interest was existential well-being. additional measures included quality of life, distress, anxiety, depression, and self-efficacy. the results indicated short-term benefits of the mmi, including a significant improvement in meaning in life and a trend toward greater quality of life and existential well- being (henry et al., ). no significant effects were found for general self-efficacy or continuous measures of psychological distress. based upon the findings, it is possible that the observed changes are the result of receiving the therapist’s time and attention as opposed to the intervention itself. the mmi is often used in conjunction with behavioural and educational interventions, making it more difficult to disentangle the effects of the mmi (lee et al., ). one improvement to the study would be the inclusion of a larger sample size and a third comparison group to control for the effects of working with an attentive and supportive therapist (henry et al., ). improved standardization of the mmi and a longer follow up period would also be useful for observing the impact of the mmi on psychological well-being. nevertheless, these intervention studies lend empirical support to the notion that positive outcomes can follow from negative events, as some cancer patients even exceeded (i.e. thriving) their pre-diagnosis level of functioning (carver, ; lee et al., ). meaning-focused coping may be one such mechanism that helps to account for these findings. . . cancer and meaning-making at the intersection of human health and spirituality, the study of spiritual coping and meaning-focused coping provides some insight into how people adjust to cancer. rather than attempting to distinguish between spiritual coping and meaning-focused coping, each of which has some overlapping components, i use the concept of meaning-making (introduced in chapter ) to describe the ways in which people tend to derive meaning from their experiences. meaning- making complements traditional theories of coping that posit a transactional relationship between the person and his/her environment (bigatti et al., ; folkman & lazarus, ; waldrop et al., a). meaning-making takes into account that people have both capacities and limitations which affect their ability to exercise personal agency and control in managing a stressful situation (mccorkle et al., ; pargament & mahoney, ). although spirituality has received increased attention in the psychosocial oncology literature (carroll, ; girardin, ; laranjeira et al., ; van der spek et al., ), research on meaning-making is still relatively new, and few studies have considered how companion animals may be involved in this process (nitkin, ). in the coping literature, support seeking is routinely reported among the strategies most often used by people to cope with cancer (bigatti et al., ; dunkel-schetter, feinstein, taylor, & falke, ; hopman & rijken, ). people make meaning from their experiences and, in many cases, seek out relationships and connections to validate these meanings (neimeyer et al., ). accordingly, these relationships allow people to experience attunement, meaning the process of “tuning into the subjective experience of another being and responding to that experience” (lasher, , p. ). attunement is regarded as a fundamental need (bowlby, ; winnicott, ) that, when fulfilled, provides a “psychological sense of accompaniment” (blazina, ). findings from recent studies suggest that some cancer patients do experience enhanced meaning, specifically, as it pertains to their intimate relationships (molzahn et al., ; van der spek et al., ). relationships can provide a buffer against the effects of stress, and yet, it is also apparent that adjustment to cancer continues well beyond the conclusion of treatment (bultz & carlson, ; kazanjian et al., ; waldrop et al., a). for many people, cancer represents a critical life event with enduring psychosocial, existential, and physical consequences (boehmer et al., ; kazanjian et al., ; vachon, ). research suggests that the stage of cancer can have a greater influence on how people cope with their illness than the specific type of cancer (hopman & rijken, ). when diagnosed at an advanced stage, a person is faced with the prospect of dying early. existential issues refer to inexorable challenges of human life including loneliness, death, meaning, and freedom (yalom, ). these issues may come into focus after a cancer diagnosis, prompting a person to reflect upon what is most meaningful in life (girardin, ; a. j. lopez et al., ; yalom & josselson, ). research on spiritual and meaning-focused coping has all but overlooked the importance of companion animals. this is a substantial omission considering the potentially health-enhancing effects of human-animal bond practices such as kindred relaxation and mindful moments (faver, ; fine & eisen, ). on the other side of the coin, for some people, the loss of a pet is both an inevitable and deeply impactful event (r. d. k. brown, ; morley & fook, ). pet loss can be compounded by other losses that accompany cancer (e.g. decline in health, loss of a job), and are further complicated by issues surrounding the practice of euthanasia (r. d. k. brown, ; morley & fook, ). interventions designed to promote meaning-making and psychosocial adjustment to cancer must take into account both the benefits and risks of sharing one’s life with a companion animal. in summary, spirituality is increasingly recognized as being integral to the provision of holistic, patient-centered care (carroll, ). some authors question whether spirituality is too nebulous or ephemeral for empirical investigation, while others find the aim of formalizing spirituality into a treatment modality problematic (girardin, ; pargament & mahoney, ). some oncology settings include tools to assess spirituality (e.g. fica, hope) as part of their routine assessments (girardin, ). hospitals and health care facilities offer services to address patients’ spiritual needs including prayer, meditation, blessings, the reading of sacred texts, visits from spiritual leaders, and visits with therapy animals or patients’ own pets (carroll, ; girardin, ). however, this last aspect of spiritual care remains understudied and underutilized in cancer care. much of the scholarship on pets and human spirituality appears to be theoretical or conceptual in nature rather than empirical. being in the presence of pets and attempting to relate to them is considered by some researchers as an “act of spiritual growth” (skeen, ). with all that animals have to teach us about our spiritual development, perhaps it is no wonder that people continue to turn to animals in times of joy and suffering. . spirituality and pets . . spiritual significance of the human-animal bond the significance of animals for human spirituality has been documented throughout history in sacred texts, legends, customs, practices, and religious teachings (brandes, ; r. d. k. brown, ; coren, ; hanrahan, ; manes, ; b. p. smith & litchfield, ). admired for their power and beauty, horses were worshipped as gods among ancient civilizations (keaveney, ). in ancient egypt, cats were associated with the goddess representing the sun, and were honoured accordingly (walsh, b). mourning rituals were undertaken to mark the loss of a dog, including mummification and burial in one of egypt’s animal necropolises (coren, ; walsh, b). for their loyalty and companionship, dogs were revered as guides for their human caretakers in the afterlife (b. p. smith & litchfield, ; walsh, b). in traditional indigenous australian spirituality, dogs were thought to be capable of detecting the presence of evil spirits (b. p. smith & litchfield, ). moreover, people in other parts of the world have participated in similar burial practices over centuries, attesting to the intensity and endurance of the human-animal bond (brandes, ; morey, ). even today, some religious organizations offer animal blessings to acknowledge the significance of animals in people’s lives (r. d. k. brown, ; holak, ). animal blessings can be traced back to st. francis of assisi, the patron saint of pets and animals in catholicism (skeen, ). notably, these spiritual practices extend to ceremonies commemorating animals who have served in law enforcement and the military (holak, ; skeen, ). a common theme that emerges from research on spirituality is that of animals as “teachers” in relation to people (grandin & johnson, ; keaveney, ; maharaj & haney, ). among the spiritual lessons gleaned from humans’ interactions with animals are an appreciation of diversity, and a recognition of the kinship and interdependence of all living beings (faver, ; hanrahan, ; keaveney, ). these spiritual lessons confer particular obligations including the responsibility of humans to care for the environment and its inhabitants (hanrahan, ; b. p. smith & litchfield, ). humans’ very survival and well-being depend on their efforts to preserve the well-being of animals, both domesticated and wild (faver, ; hanrahan, ). when referring to pets, some authors prefer the terms “parent companion” or “human caretaker” instead of pet owner to convey the moral and ethical duty of people to care for animals (hanrahan, ; walsh, b). accordingly, domesticated animals are seen as a mediator between nature and culture, allowing people to go beyond traditional understandings of family, friendship, and companionship (hirschman, ; mosteller, ; e. power, ). . . sacred consumption and the human-animal bond the human-animal bond provides experiences of a spiritual nature (hill, gaines, & wilson, ; holbrook, stephens, day, holbrook, & strazar, ; keaveney, ). pets are often kept inside the home and their physical proximity with people has particular meanings and implications (mosteller, ). to illustrate, people and pets share a variety of consumption experiences (e.g. walking, eating, travelling, and watching tv) that transcend customary notions of possessors and possessions (holbrook, ). these shared experiences have been referred to as “a sacred and spiritual consumption” (holbrook et al., ). the consumer-pet relationship conveys a kind of intimacy that, according to some reports, is experienced as intrinsically rewarding rather than a means to an end (holbrook et al., ; podberscek et al., ). while pets may serve particular functions such as guarding the house or motivating people to engage in physical activity, these do not appear to be the primary reasons for having a pet (hill et al., ; holbrook, ). pets may fulfill needs that exceed a person’s original expectations such as assisting in the accomplishment of important life projects or the resolution of existential concerns (mosteller, ). to illustrate, people who see themselves as responsible pet owners may choose to take their dog for a walk everyday regardless of inclement weather. such practices reinforce their self-concept and self-worth (brooks et al., ; mosteller, ). researchers have developed postmodern methodologies in an effort to better understand the consumer-pet experience (hill et al., ; mosteller, ). for example, in a phenomenological study, researchers conducted in-depth interviews with six participants regarding their professional work (e.g. breeding animals) in the pet care industry (mosteller, ). the participants reported caring for between and animals at some point during the course of their career. the results suggested that participants were deeply committed to ensuring the well-being of the animals in their care. from their early childhood experiences, participants had been socialized to think of pets as family members, leading them to develop strong emotional attachments to animals (blazina, ; mosteller, ; walsh, b). two themes were identified: rescuer and caretaker (mosteller, ). the rescuer theme reflected participants’ views of themselves as having compassion, empathy, and a sense of duty to help animals. the caretaker theme referred to participants’ dedication to animals including the personal and financial sacrifices they made. participants reported that caring for a large number of animals had a negative impact upon their well-being. at times, participants felt isolated, and, at others, they felt that having animals led to more opportunities to socialize with people. another example of the use of novel methodologies is provided by a study involving canine life histories which had been developed for the purpose of documenting the lifecycle of companion dogs (hill et al., ). these canine life histories were produced by the principal investigators using in-depth essays and personal self-reflections. an analysis of these ethnographic reports revealed the essential role of pets in family gatherings and important life transitions (e.g. family member going to college). within the family, pets appeared to have more than one capacity, enabling them to relate to family members in terms of each member’s unique developmental needs. what began as everyday pet care responsibilities soon evolved into cherished routines that helped to solidify the bond between pets and family members (hill et al., ; maharaj, ; e. power, ). quite simply, pets were seen as the embodiment of what gives meaning to daily life, permitting adults to become engrossed in the kind of delight and rapture that is often witnessed among children (hill et al., ). . . meaning-making and companion animals in view of the foregoing discussion, it is worth noting that the desire and capacity to find meaning in life is not contingent upon experiencing a negative event (carver, ). meaning- making can be thought of as a normative process that enables people to make sense of their experiences (jim et al., ). for some people, the outcome of this process may be an enhanced sense of self-worth and self-efficacy in dealing with events, both good and bad (boehmer et al., ; costanzo et al., ; lee et al., ). one intriguing aspect of human experience is how people tend to make sense of their relationships with animals, particularly, pets and companion animals. observed almost universally among pet owners (serpell, ), anthropomorphism refers to the tendency of people to attribute human feelings and qualities onto non-human animals (hirschman, ; walsh, b). examples of anthropomorphism range from the mundane (e.g. characters in children’s books) to the extreme (e.g. models of human disease) (pagani, ). with greater access to domestic spaces, pets have become increasingly anthropomorphized, cementing their place as family members (dotson & hyatt, ; hoffer, ). people talk to their pets, take photos of them, give them presents, celebrate their birthdays, and take them on family vacations (coren, ; holbrook, ; walsh, b). the idea of animals as being intelligent or having a personality (i.e. to anthropomorphize animals) is considered to be a “cardinal sin” by many human-animal bond researchers (coren, ). even as i compose this literature review, i am aware of my decision not to comply with the formatting requirements of the american psychological association’s publication manual, which warn against attributing human qualities to animals or inanimate objects (american psychological association, ). without getting into philosophical debates about the existence of mental or affective states among animals (skeen, ), i agree with the common-sense approach advanced by stanley coren and jonathan balcombe, two leading experts in animal behaviour. these experts explain that the tendency to anthropomorphize animals is not only widespread among pet owners, but is inevitable (balcombe, ) and something that people do “quite automatically” (coren, ). neither pet guardians nor researchers can ask animals what they think or feel. instead, they can attempt to understand the animals’ behaviour using qualities (i.e. human characteristics) with which they are most familiar (balcombe, ; coren, ). some of the concerns raised about anthropomorphism lie in the way that it tends to be conceptualized in research (balcombe, ). to illustrate, it has been suggested that people who view animals merely as an extension of themselves are less capable of empathizing with them (s.-e. brown, ; hirschman, ). this view of animals implies a social relationship wherein the person is erroneously projecting feelings onto an animal and the animal does not reciprocate (s.-e. brown, ). along with my master’s research on people and companion dogs (maharaj, ), studies show that people do believe that pets can reciprocate feelings and emotions (cohen, ; fine, ; sanders, ; walsh, b). many people regard their pets as sentient (i.e. possess feelings) beings, capable of demonstrating empathy and engaging in goal-directed behaviours (hirschman, ; e. power, ; sanders, ). even at an early age, children recognize that animals share many important similarities with people and also differ from them in remarkable ways (pagani, ; pagani, robustelli, & ascione, ). acknowledging similarity and acknowledging diversity are two integral components of developing empathy towards others (coren, ; lasher, ; pagani, ). in child development research, diversity is considered a ubiquitous feature of human life, and represents anything that is “not the self” or the “present self” (pagani, ). at any moment, humans are tasked with having to relate to diversity in the natural and built environment which can “mobilize their empathic abilities” (pagani et al., ). for humans, being in the company of animals often evokes curiosity and fascination (davis, ; faver, ; grandin, ). considering the deep significance of animals for many people, it is not surprising that people spend much of their time trying to understand and communicate with their pets (cohen, ; coren, ; e. power, ). shedding some light on the role of anthropomorphism in research, coren ( ) recounts a conversation he had with renowned psychologist donald o. hebb. hebb was describing his work at the yerkes national primate research center, during which he was attempting to document the temperament and behaviour of chimpanzees using objective language, devoid of human qualities and emotions. while reviewing his notes, hebb proclaimed that he “couldn’t find any order, pattern or meaning in that kind of data” (coren, , para. ). hebb went on to remark that the animal keepers, who had spent the most time caring for these chimpanzees, often used anthropomorphic statements (e.g. shy or friendly) to describe the chimpanzees. to do their job, the animal keepers needed to be able to understand and explain the chimpanzees’ behaviour. anthropomorphizing the chimpanzees helped to provide predictability and consistency in the way that the keepers interacted with the animals in their care. two important points can be gleaned from hebb’s story that i believe are relevant to understanding the experiences of cancer patients and their pets: the significance of finding meaning in what appears to be chaos, and the importance of understanding people’s everyday experiences with caring for a pet. on a fundamental level, people are driven toward finding meaning and connection (bowlby, ; frankl, ). in studies on cancer and meaning- making, investigators have found that people actively construct a narrative of meaning as they adapt to the psychosocial consequences of living with cancer (laranjeira et al., ; molzahn et al., ; vachon, ). while in previous work, researchers have tended to emphasize the negative sequelae of a cancer diagnosis, there has been greater interest in exploring the potential for growth and positive change among cancer survivors (carver, ; costanzo et al., ; laranjeira et al., ). however, with the exception of research on animal-assisted interventions with cancer patients, the experiences of cancer patients and their pets have been virtually ignored in the field of psychosocial oncology (larson et al., ). accordingly, the aim of the present study is to develop an essential understanding of the nature and meaning of the human- companion animal relationship for people with cancer. . conclusion in summary, i began this literature review with the objective of reviewing research on pet ownership among people living with cancer, prefacing this by commenting on the dearth of studies at the intersection of meaning-making and the cancer patient-companion animal relationship. perhaps, as katcher (as cited in dotson & hyatt, ) noted over years ago, and still relevant today, reluctance toward sentimentality has turned some researchers away from studying the meaning of pets in people’s lives. as researchers continue to study the implications of pet ownership, it is important to remember that obtaining measurable and robust health outcomes is hardly what matters most to their human caretakers (podberscek et al., ; ryan & ziebland, ). caring for a pet provides continuity, enabling a person to contribute meaningfully to the welfare of another living being (brooks et al., ). pets bear witness to, and participate in some of the most intimate areas of a person’s life (blazina, ; maharaj, ; e. power, ). for some people, pets may be the ideal companions to accompany them as they discover what it means to live with and beyond cancer (horowitz, ). this deeply personal and complex relationship should be considered worthy of formal scientific curiosity (grandin, ). chapter : methodology in this chapter, i outline my approach to addressing the research question: what is the lived experience of the human-companion animal relationship for people with cancer? i begin by describing the philosophical underpinnings of phenomenology. i draw upon max van manen’s work to situate the current study within the context of phenomenological inquiry. in describing van manen’s work, i treat phenomenology as an attitude, method, and process of writing and reflecting. next, i outline the research design including the study’s eligibility criteria, recruitment process, and research context. i describe the steps undertaken in data collection and analysis. for data analysis, i used a combination of van manen’s ( ; ) and j. a. smith et al.’s ( ) approaches, the former offering a framework to guide my reflections and interpretations, and the latter providing concrete analytical steps. the chapter concludes with a discussion of the criteria for assessing the trustworthiness of qualitative research. . phenomenological approach to inquiry . . philosophical underpinnings of phenomenology phenomenology has been described as a philosophy and a discipline. the suffix logy means word or study; phenomenon means “that which appears” without implying a specific domain or subject of study (van manen, ). phenomenology is comprised of a set of traditions embedded in th and th century european philosophy (dowling, ; langdridge, ; van manen & adams, ). a common concern among these varied traditions is investigating the source of meaning in everyday life (van manen, ; yontef & jacobs, ). in transcendental phenomenology, a tradition that originated in the work of husserl, phenomenological reflection takes place through the method of the reduction (van manen, ). whereas, in natural science, reduction entails reducing something to its simpler or more fundamental components, here, reduction means that we embrace the complexity and ambiguity of a phenomenon. the reduction requires that we pull away from the natural attitude (i.e. our everyday beliefs about the world), and remain open to how phenomena present themselves in lived experience (dowling, ; van manen & adams, ). importantly, phenomena are not simply retrieved in consciousness but are constituted in terms of what they mean for us (husserl, ). proponents of husserlian phenomenology consider description as being a key aspect of this approach, and interpretation as being outside the bounds of phenomenological inquiry (dowling, ; giorgi, ; langdridge, ). distancing himself from husserl, heidegger ( ) argues that phenomena are not just constituted in consciousness but are encountered in the world in which we engage with them. heidegger proposes an interpretive phenomenology which rests upon the nature of being-in-the- world. from this ontological premise, human existence is already anchored in a “world of meanings” (van manen & adams, ). all modes of being-in-the-world are already modes of understanding the world. consequently, people cannot be understood apart from the circumstances that influence their lived experience. while heidegger prioritizes understanding over description (husserl does the opposite), he shares with husserl an emphasis upon exploring the phenomenon itself rather than the theories about the phenomenon. this point is crucial to understanding what phenomenology does and does not do. in phenomenology, we remain oriented to an experience as a possible human experience, and attempt to capture it in such a way that others can experience it (j. a. smith et al., ; van manen, ). phenomenology does not aim for accurate descriptions of the subjective thoughts and opinions of a particular individual (e.g. case study) or group of individuals (e.g. ethnography) (dowling, ). like husserl, gadamer ( ) sees the methods of natural science as being antithetical to the aims of human science. natural science is concerned with investigating objects and events using quantitative measurement, detached observation, and controlled experimentation (van manen, ). in the field of human science (e.g. phenomenology, ethnography, symbolic interactionism, critical theory, etc.), researchers are interested in studying people and how they express meaning in the world, for which the preferred methods are description, interpretation, and critical reflection. human science is based upon an epistemology of language and text (i.e. we know through language) (van manen, ). while nature can be explained using causal or probabilistic explanations, human life is understood by explicating the meaning of a phenomenon (dilthey, ). a phenomenological human science is manifest in a deep fascination with what is unique or singular about a phenomenon (van manen & adams, ). in striving to grasp the uniqueness or essence of a phenomenon, (merleau-ponty, ) emphasizes the study of prereflective experience, in other words the experience that we live through in daily life. the essence of a phenomenon is something that without it, the phenomenon would not be what it is (merleau-ponty, ). to investigate the essence of a phenomenon, the researcher must adopt an attentive awareness (i.e. wondering pathos) and style of thinking that occurs in the attitude of the reduction (merleau-ponty, ; van manen, ). through the reduction, we aim to bracket theories and assumptions that prevent us from being in contact with lived experience (merleau-ponty, ). not all phenomenologists agree about when or if the reduction is necessary. however, phenomenology demands that we thoughtfully examine our assumptions (dowling, ). considering that lived experience is mediated by thought and language, it becomes possible to access lived experience through thought and language (van manen, ). accordingly, a principal concern of phenomenology is “textual reflection” upon lived experience (van manen, ). when we reflect upon a text, we disclose something that is meaningful to us based upon our relationship to the subject matter (gadamer, ). the beliefs and assumptions that are unique to a particular researcher are part of what makes phenomenology a worthwhile form of inquiry (langdridge, ; k. a. lopez & willis, ). each phenomenologist has his/her own “personal signature” and style (van manen, ). this is not to say that phenomenology relies upon idiosyncratic research practices, nor is it desirable to imitate the work of others. by grounding our work in the traditions of phenomenology, we begin to “see” and “transcend” our limits (van manen, ). by examining and making explicit our own assumptions (i.e. the reduction), we can be more open and inclusive of others’ experiences (heidegger, ). . . situating max van manen’s phenomenology phenomenology, as proposed by husserl and heidegger, is considered to be a philosophy rather than a research method (dowling, ; giorgi, ; mcconnell-henry, chapman, & francis, ). accordingly, i turned to the work of van manen ( ) whose practical methods and techniques serve as a modern extension of the human science research tradition. van manen’s approach entails both the description and interpretation of lived experience (dowling, ). as with husserl and merleau-ponty, van manen ( ) regards phenomenology as the study of essences or universals but is careful to emphasize that an essence is not some ultimate core of meaning. where van manen departs from husserl is in his treatment of the reduction. husserl, a mathematician by training, sees the reduction as a process of bracketing our assumptions, almost as if we are meant to separate our assumptions and set them aside (k. a. lopez & willis, ; van manen, ). although van manen considers the reduction necessary, in his view, husserl’s notion of bracketing is not possible in the sense of complete reduction (langdridge, ). according to van manen ( ), if we attempt to ignore or discard our assumptions, they are likely to “seep back” into our interpretations and reflections. similarly, heidegger ( ) suggests that it is not possible to separate our understanding of the world from our “being-in-the-world.” van manen ( ) argues that we should bracket our assumptions and preconceptions not by discarding them but by making them explicit. we should keep our assumptions at a distance without trying to forget them or abandon them altogether. strategies proposed by van manen include actively listening to other people’s experiences and engaging in reflective journaling. in line with van manen’s ( ) point about the reduction being necessary, it is worth noting that we often begin a study by saying that “little is known about this” or “more research is needed on this topic.” phenomenology invites us to consider that, perhaps, “we know too much” (van manen, , p. ). due to our preconceived notions about the world, we assume we know something of the phenomenon before we fully consider our research question (van manen, ). in chapter , i posed the research question: what is the lived experience of the human- companion animal relationship for people with cancer? to paraphrase van manen, my objective was to come to an understanding of what makes it possible to say that between a person and his/her companion animal, there exist the human-companion animal relationship. i drew upon six activities proposed by van manen ( ) for conducting phenomenological research: ) turning to a phenomenon which seriously interests us and commits us to the world, ) investigating experience as we live it rather than as we conceptualize it, ) reflecting on the essential themes which characterize the phenomenon, ) describing the phenomenon through the art of writing and rewriting, ) maintaining a strong and oriented pedagogical relation to the phenomenon, and ) balancing the research context by considering parts and whole (pp. - ). firstly, in carrying out each of these six activities, i strived to be reflective, continually questioning and reflecting upon the importance of the human-companion animal relationship (van manen, ). secondly, i remained oriented to gathering descriptions of lived experience rather than theories or concepts about this relationship. thirdly, i treated writing as being inseparable from researching the human-companion animal relationship (van manen, ). lastly, i considered that the phenomenological text that i produced would be one example among other possible interpretations. consequently, i would have been remiss in attempting to arrive at a single and exhaustive description of the human-companion relationship (van manen, ). instead, my aim was to gather concrete examples or instances of the human-companion animal relationship in order to grasp the essences of this relationship for people with cancer. . . . phenomenology as attitude phenomenology aims to break through the natural attitude, in other words, the kind of taken-for-granted attitude with which we approach the world. the natural attitude is reflected in our belief that the world exists independently of how we experience it (husserl, ; mensch, ). in phenomenology, the intent is not to deny the natural attitude but rather acknowledge that our concepts and theories shape how we experience the world. in his seminal work, husserl ( ) described the need for adopting an attitude of openness towards how things give themselves in lived experience. the phenomenological attitude is revealed in our attempt at being reflectively attentive to how people experience something before they conceptualize it. van manen ( ) uses the example of pain to illustrate the phenomenological attitude. we can rate or quantify pain using instruments. we can conceive of pain as a sensation but, describing the actual experience is so difficult. it seems beyond words. as in the example of pain, our concepts and theories often originate fro m our everyday experiences, all of which are part of the natural attitude. although there tends to be a distrust of theories that constrain our understanding of the world, theories do offer insights that enable us to access lived experience. phenomenologists draw upon theories to expose what they potentially mask about lived experience (van manen, ). importantly, when we try to capture lived experience, we are already too late. we can only retrieve lived experience by reflecting upon it retrospectively, as when we recall a situation or event (van manen, ). accordingly, we are continually striving to capture lived experience and are faced with the impossibility of grasping lived experience. rather than giving up, van manen ( ) states that we should embrace this impossibility as part of what makes phenomenology so intriguing and demanding. phenomenology compels us towards insights, understandings, and meanings that challenge our assumptions (van manen, ). through description and interpretation, phenomenology helps us to get at the structures of meaning embedded in lived experience. phenomenology is not prescriptive in terms of its procedures and techniques. however, phenomenology does offer particular research methods that are developed in response to the research question, and are guided by a body of phenomenological scholarship (van manen, ). phenomenology is ever renewing and reinventing itself as a collection of practices that are creative, poetic, and insightful (van manen, ). in his poem, malte laurids brigge, rilke states, “did i say it before? i’m learning to see—yes, i’m making a start. i’m still not good at it. but i want to make the most of my time” (rilke, ). after considering the aim of studying a phenomenon as rich and complex as the human-companion animal relationship, i found it peculiar to think of starting such a project with a pre-determined set of procedures. in the spirit of modesty and optimism, i tried to make a start and make the most of my time. . . . phenomenology as method some theorists are wary of attempts to reduce phenomenological inquiry to a sequence of steps and yet, phenomenology is often described as a method (van manen, ). the term method, however, is used to convey the aim of adopting a certain attitude and practising an attentive awareness to experience as we live it before we conceptualize it (merleau-ponty, ; van manen, ). husserl ( ) used the term “lifeworld” (lebenswelt) to describe what people experience prereflectively without interpretation. phenomenology aims to enrich our understanding of the meaning and importance of everyday experiences (j. a. smith et al., ; van manen, ). perhaps better described as “meaning-giving methods,” phenomenology entails abstemious reflection, in that we abstain from theoretical or conceptual definitions of a phenomenon (van manen, ). by reflecting upon prereflective experience, we can gain concrete insights into the meaning of a phenomenon. we may ask: what makes this experience distinguishable from others? or, what is the nature, meaning, importance, or uniqueness of this phenomenon? as such, phenomenology is more a method of questioning rather than providing answers or drawing conclusions (van manen, ). phenomenology differs in important ways from other methods. whereas the scientific method involves an objective and impersonal approach to inquiry, the phenomenological method calls for the use of the vocative by means of examples, images, and anecdotes (van manen, ). the vocative refers to the expressive power of language and text which enables us to reveal the essence of a phenomenon. mensch ( ) refers to this as a shift from exploring what is abstract to exploring what is particular about a phenomenon. in contrast to the social sciences that are concerned with explaining phenomena, phenomenology aims to describe and interpret phenomena. another notable departure from other methods is that phenomenology does not necessitate repetition, comparison of outcomes, and indexing of data (van manen, ). phenomenology does not seek to analyze concepts nor does it help us to develop theories to explain why something happens. instead, phenomenology may bring in theories and concepts to show where these are lacking in terms of experiential meaning. ultimately, experience is saturated with meaning, and phenomenology helps us to grasp that which makes seemingly ordinary experiences meaningful and lasting (j. a. smith et al., ; van manen, ). . . . phenomenology as writing and reflecting phenomenological writing is a process that entails both researching and reflecting upon the meaning of lived experience. reflection takes place in the practice of writing, and writing is essential to the phenomenological method (van manen, ). a related term is hermeneutics which is a methodology or philosophy that is concerned with interpreting text. hermeneutic means that when we engage in reflection, we are aiming for discursive language as we interpret and ascribe meaning to the phenomenon under study (k. a. lopez & willis, ; van manen, ). much of phenomenology has hermeneutic or interpretive aspects but not all hermeneutics are phenomenology (van manen, ). in using the term phenomenology, i am referring to hermeneutic or interpretive-descriptive phenomenology. interpretive-descriptive phenomenology uses a systematic approach of questioning and reflecting in order to articulate the meanings that are rooted in lived experience (van manen, ). the result is a phenomenological text that is designed to “awaken” an experience and to create a “sense of resonance” in the reader (van manen, ; van manen & adams, ). it is common in phenomenological writing to use the pronouns “i” or “we” where possible. this linguistic device is intended to communicate to the reader that a particular experience could be his/hers, and also that the reader’s experience could resonate with others, including me (van manen, ). phenomenological writing requires interpretive skills and creative talents on the part of the researcher to express the meaning of lived experience. between reflecting and questioning is what van manen ( ) calls “reflective insight” and “narrative ability.” phenomenologists make use of expressive, poetic, and vocative language to evoke particular meanings that cannot be done with formal prose. often used are anecdotes, stories, and concrete examples. such experiential descriptions speak to our cognitive and noncognitive sensibilities. as van manen ( ) suggests, a phenomenological text is not meant to express something that we know, but instead the text lets us experience something that we do not know in an intellectual sense. similar to poetry, meanings are strongly embedded in a phenomenological text such that the text cannot be easily summarized or paraphrased (van manen, ). while phenomenology often borrows insights from poetry, phenomenology is not the same as poetry. phenomenological themes make explicit, essences, whereas, in poetry, themes remain “implicit and particular” (van manen, ). phenomenology uses vivid examples to make the participants’ experiences more accessible, thus, allowing the reader to grasp what is singular about the phenomenon. . research design through systematic and empirical methods, i drew upon van manen’s ( ) phenomenology to explore the relational meaning and importance of having a companion animal for people with cancer. in keeping with the attitude of the reduction, i did not treat the human- companion animal relationship as a concept, nor did i rely upon theories to make predictions or generalizations about this relationship. my objectives were to inquire about what makes this relationship unique and meaningful, and how this relationship arises in lived experience. to gather lived-experience descriptions, i used two methods described below: ) the experiential data-gathering interview, and ) photo elicitation. . . methods for collecting lived-experience descriptions . . . the experiential data-gathering interview my purpose in undertaking the interviews was to explore how people experience their relationship with their companion animal(s) as they were living with and recovering from cancer. i remained oriented to the meaning of the human-companion animal relationship as an “essentially human experience” (van manen, ). i collected lived-experience descriptions by inviting participants to share anecdotes, stories, examples, and recollections (van manen, ). as merleau-ponty ( ) stressed, i sought to elicit straightforward descriptions from the participants rather than their opinions or generalizations. my concern was less about the factual accuracy of the participants’ accounts, but rather the experiential quality (i.e. details, examples) of their descriptions (van manen, ). throughout the process of collecting data, it was valuable to keep in mind that lived- experience descriptions are not the same as lived experience. lived experience, by its very nature, is elusive; we are always too late to capture it. lived-experience descriptions are already transformed in some way by the fact that they are being recalled retrospectively (van manen, ). nevertheless, the experiential data-gathering interview allowed me to “borrow” other people’s experiences and carefully attend to their reflections on lived experience (van manen, ). my concern was with the nature of the human-companion animal relationship in terms of the following kinds of questions: how is this experience an example of the human-companion animal relationship? is this what it means to connect with a companion animal? . . . photo elicitation prior to the interview, i invited the participants to bring in photos that depicted daily events or experiences involving their companion animal for discussion during the interview (latham, ; rose, ). i encouraged participants to share photos that were meaningful to them (latham, ). my objective in using photo-elicitation was to bring the participants’ everyday experiences into the research process by encouraging them to reflect upon their experiences over a broader period of time than would have been possible without the use of photos (latham, ; e. r. power, ). i drew upon the following questions to elicit information about photos: can you tell me what this photo means to you? what was it about this experience that you wanted to capture? is taking photos of your pet something you would normally do? how are you experiencing the photo right now as we are looking at it? . . study procedures . . . participant selection i used a purposive sampling strategy (flick, ; miles, huberman, & saldana, ) to identify participants with the following attributes: at least years old, fluent in written and spoken english, currently have a cat or dog, have received a diagnosis of cancer at least six months ago, and have had time to think about the importance of their pet since their diagnosis. there were no eligibility restrictions in terms of age, gender, or type of cancer. i focused on recruiting people with cats and dogs primarily, as these tend to be the most common pets in north america (sandoe et al., ). given variations in the life expectancy of cats and dogs, participants were not required to have had a pet prior to their cancer diagnosis. it was, however, required that participants were currently living with their pet, and were one of their animal’s primary caretakers. with regards to sample composition, it was reasonable to expect that participants would be similar to one another in terms of being a pet owner, but could be heterogeneous in other respects such as age and occupational status. heterogeneity was also anticipated among participants with the same type of cancer, considering the uniqueness of the cancer experience. the decision to recruit participants who were at least six months post-diagnosis was informed by research suggesting that this time period is useful for capturing changes which are important to a person’s adjustment trajectory (linden, mackenzie, rnic, marshall, & vodermaier, ). in the first six months after diagnosis, it is likely that participants have completed a first wave of treatment. within the next six months, participants are thought to have entered a “period of survivorship that is no longer overshadowed by acute treatment and its side effects” (linden et al., , p. ). moreover, previous investigations have found that the stage of cancer can have a greater impact on a person than the specific type of cancer (hopman & rijken, ). it was preferable to recruit as many participants as possible at the stage of treatment completion (i.e. roughly months post-diagnosis) and follow-up care given that these patient groups have not been studied as extensively as people who are more recently diagnosed (hopman & rijken, ; linden et al., ; waldrop, o’connor, & trabold, b; wenninger et al., ). . . . recruitment and research context following ethical approval, i contacted organizations that provide psychosocial support to people with cancer, and sought their permission to put up posters in their clinics or centres (appendix b). the program coordinators of two cancer care organizations allowed me to advertise the study in their respective newsletters. these newsletters were emailed to cancer patients and professionals working in oncology settings who had opted-in to a mailing list. i was also permitted to put up posters in pet stores, veterinary clinics, community centers, and coffee shops. the posters were intended to attract the interest of people who saw their relationship with their companion animal as being important to their cancer journey. lastly, i reached out to individuals involved in human-animal bond initiatives including animal behaviour research, dog clubs and shows, and pet therapy programs. three of the people i contacted agreed to post the study advertisement on their facebook page. recruitment took place over a four month period. upon being contacted by phone or email, i arranged a brief phone call to confirm the participant’s eligibility and provide more information about the study. i emailed interested participants a copy of the consent form and requested that they contact me if they agreed to take part in the study or had any further questions. most participants responded within a day or two after reviewing the consent form. in a few instances, i waited a week before following up with participants. during our second phone call, i sought the participants’ verbal consent to take part in the study, and arranged a time and place to conduct the interview. i reminded participants about the use of photos in the study and the option of bringing cell phone images or printed copies for discussion during the interview (latham, ; rose, ). all in all, individuals contacted me of whom took part in an interview. three of these participants were referred to the study by a friend whom i had interviewed previously. among the three people who declined to participate in the study, two did not reply when i emailed them and one agreed to participate and did not show up for the interview. the three remaining individuals contacted me a few weeks after the fourteenth interview at which point i had decided not to conduct any additional interviews. this decision was informed by the recommendations of researchers that it is appropriate to suspend data collection once enough concrete examples have been collected from participants in order to produce detailed descriptions and anecdotes (langdridge, ; j. a. smith et al., ; van manen, ). after reviewing the tapes and my notes, i determined that it was appropriate to conclude data collection. in phenomenology, the issue of sampling is important for collecting a rich dataset of concrete and experiential descriptions from people with relevant experience, as opposed to obtaining a specific number of participants (van manen, ). smith et al. ( ) have suggested interviewing six to eight participants as a reasonable sample size. however, i found it useful to collect data from a larger sample size given the relative diversity of the participants whom i interviewed. considering that phenomenology aims for uniqueness and singularity rather than frequency and repetition (van manen, ), my primary concern was not with achieving saturation, meaning the point at which no new information arises from subsequent interviews (braun & clarke, ). instead, i sought to obtain comprehensive accounts from both cat and dog owners, men and women, and people at different stages in their cancer journey. . . . interviews eight interviews were held at the participants’ home, three at a university campus, two at a coffee shop, and one by phone due to geographical distance. pets were present for interviews that took place at the participants’ home. at the start of our meeting, i reminded participants of the purpose of the study, and explained that the results would form the basis of my doctoral dissertation. next, i gave the participants an opportunity to review and complete the informed consent form (appendix c). i sought permission from participants to audiotape the interview and informed them that their names and pets’ names would not be included in any reports of the final study. i explained that pseudonyms would be used for pets. i offered the participants a small honorarium of $ to thank them for their time. one participant declined the honorarium; a second participant donated the money to a university program. after obtaining their consent, i informed the participants that the tape would begin recording. in an effort to build trust and rapport with participants, i began with the following statement: “i’m interested in what your relationship with your pet(s) is like, how it is important to you, and what it has been like over time and during your cancer journey.” i reminded participants about the photos and invited them to share these with me at any point during the interview. some participants showed me collections of photos such as a photo calendar or memory book. others shared video clips such as their pets’ birthdays, trips to the beach, and household chores. still others opted to share only a few pictures that were particularly meaningful to them such as reuniting with their pet after being in the hospital or enjoying their nighttime routine with their pet. some photos were taken recently while others were several years old. early on in the interview, i asked participants to tell me about their diagnosis and cancer experience. next, i asked participants to describe their pet and what makes this relationship important to them. my intent was to capture the stories of participants’ relationships with their pets during their cancer journey. the following question was used as an anchor point for the interview: when we go back to when you got your pet(s), what was it like then? next, i followed-up by asking what their relationship had been like since then to get a sense of participants’ experiences with their pets over time. some participants had their pet before receiving their cancer diagnosis whereas others had acquired their pet following their diagnosis. considering that the chronological order of these two events (i.e. acquiring a pet, receiving a cancer diagnosis) differed among the participants, it seemed wise to avoid using the time of diagnosis as an anchor point for the interviews. for participants who had their pet pre-diagnosis, i did not want to presuppose any changes to their relationship with their pets following their cancer experience. in addition, although a cancer diagnosis represents a significant life event, i wanted to be alert to other experiences that were pertinent to their relationship with their pet. for example, some participants emphasized the importance of their pets during other stressful periods such as ending a relationship with a romantic partner, dealing with addiction or substance use, and coping with mental health concerns. moreover, i saw this approach as being consistent with the attitude of the reduction, which calls for the interviewer to listen to participants’ stories with openness and attentiveness to their lived experience (van manen, ). throughout the interviews, i remained oriented to the phenomenological aim of gathering detailed stories and anecdotes as opposed to general opinions and beliefs (van manen, ). i drew upon a list of open-ended questions and neutral prompts to guide the interview (appendix d). examples of prompts were: what were you doing, what was your pet doing, can you describe the place, how did you feel? the questions evolved over time with the aim of building rapport with participants and allowing them to discuss their interests and concerns (flick, ; j. a. smith et al., ). i refrained from asking participants to explain why something happened or what they thought about a particular issue (van manen, ). more often, i opted to use silence or restate the participant’s last comment to elicit more information. when describing their pets, participants often mentioned recurring events such as meal times and daily walks. in these instances, i encouraged participants to recall a specific example or a recent experience and describe what was happening in as much detail as possible. in determining when to conclude the interview, i tried to be mindful of participants’ body language and facial expressions. in some cases, participants appeared fat igued or requested a break. some participants made comments such as “i think that’s about all i have to tell you” or “i can’t think of too much else to say.” others asked me if i had any further questions for them. at this time, i inquired about whether there was anything else that participants wanted to share or if there was something we hadn’t covered up to this point. i sought their agreement to close the interview and stopped the recorder. lastly, i asked the participants to provide demographic information by completing a short questionnaire (appendix e). after the first three interviews, i met with my supervisors to discuss the interviews. during these conversations, we explored additional strategies such as emphasizing to participants the importance of providing as much detail as possible and describing what made a particular photo or story memorable to them. i also incorporated van manen’s ( ) suggestions for eliciting information: active listening, being patient, paraphrasing the participant’s words sparingly, using silence, attending to the participants’ body language and facial expressions, and giving them space (van manen, ). as a credibility check, my supervisor reviewed two of the audiotapes to ensure that i was refraining from asking leading or close-ended questions. in preparation for data analysis, i transcribed all interviews myself. i kept the interview transcripts, audiotapes, and questionnaires separately from the participants’ contact information. all written and audiotaped material were encrypted and stored in password-protected electronic files, or secured in a locked filing cabinet to ensure the participants’ privacy and confidentiality. . data analysis in developing a systematic approach to analysis, i focused on the following research activities: reflecting on essential themes, which characterize the phenomenon, and describing the phenomenon through the act of writing and rewriting (van manen, , p. ). one objective was to develop themes which render the human-companion animal relationship a unique and distinguishable phenomenon. a second objective was to describe the importance of this relationship for people with cancer, through reflective writing and rewriting. guided by van manen’s analytic approach, i treated reflection and writing as parallel activities. the use of reflective methods enabled me to engage with the transcripts repeatedly by: a) making initial and exploratory notes, and b) isolating phenomenological themes through concrete methods and questions (van manen, ). i sought to identify similarities, differences, and nuances within the data (j. a. smith et al., ; van manen, ). along with van manen’s reflective methods, i incorporated strategies from smith et al. ( ) for actively reading the transcripts, preparing initial and exploratory notes, and working with a relatively large body of data. considering that phenomenology is fundamentally a writing activity, it was important to continually reflect upon my position as a researcher. i kept in mind smith et al.’s ( ) not ion of the researcher as being “engaged in a double hermeneutic,” meaning that i was attempting to make sense of the participants’ experience as the participants were trying to make sense of their lived experience. i also considered the place of theme development within the context of producing a phenomenological text. for van manen ( ), themes represent “creative shorthands” and “structures of experience” that enable us to get at the meaning of an experience, and bring order and coherence to our writing (p. ). themes help us to capture the meaningful aspects of a phenomenon without being exhaustive of a phenomenon. i drew upon van manen’s methods for transforming lived experience descriptions into phenomenological descriptions: d) the experiential anecdote, e) the vocative method, and f) the data-interpreting interview (van manen, ). during data analysis, i employed these reflective methods in an iterative rather than linear sequence of steps. however, i describe them separately for the purpose of clarity. . . reflective methods for exploratory noting and theme development throughout the analysis, i kept a research journal to record descriptions of the data, as well as, my understandings, questions, and insights. i developed themes through an inductive process by grounding my interpretations in the participants’ accounts as opposed to outside preconceptions or assumptions (j. a. smith et al., ; van manen, ). in undertaking phenomenological reflection, i regarded phenomenological themes as being similar to anchor points around which i could develop phenomenological descriptions and interpretations of the human-companion animal relationship (van manen, ). themes enabled me to express and give shape to this phenomenon using concrete examples and stories from participants. . . . making initial and exploratory notes during the process of transcribing the audiotapes, i began writing out my initial impressions and observations (j. a. smith et al., ). examples include: healing takes time and in the right conditions; people have a desire to let pets be in their natural spaces. the purpose of documenting my initial impressions was to become more aware of them so that i could then turn my attention to the participants’ words and meanings. following data transcription, i selected an interview that i found to be particularly compelling with detailed stories and descriptions (j. a. smith et al., ). i listened to the tape for a second time to remind myself of the participant’s tone of voice, pace, communication style, pauses in speech, and emotional responses such as laughter and tearfulness. using van manen’s ( ) wholistic approach, i read the transcript and highlighted phrases or words that were important to the research question. i pulled out data extracts that could be developed into an exemplary story or anecdote (van manen, ). i took notes on the semantic content and the participant’s use of language (j. a. smith et al., ). employing a selective approach, i recorded phrases that were “particularly essential or revealing” about the human-companion animal relationship (van manen, , p. ). similar to van manen ( ), smith et al. ( ) have likened this process to “free textual analysis,” meaning that the researcher closely attends to the participant’s use of language to help make sense of the participant’s lifeworld or context (p. ). rather than dividing the transcript into segments and assigning codes to the data, my aim was to create detailed and comprehensive notes for each transcript. in my subsequent readings of the transcripts, i used three types of exploratory notes (j. a. smith et al., ): descriptive comments, linguistic comments, and conceptual annotations (appendix f). for descriptive comments, i took note of key objects, experiences, and events; for linguistic comments, i recorded the participant’s tone of voice, emotional responses, pauses, repetition, and pronoun use; for conceptual annotations, i engaged in an interrogative dialogue by asking questions and checking my interpretations against the participant’s account. this mode of questioning provided a critical foundation for building up to a more abstract level of interpretation, which is necessary for developing themes. . . . developing emergent themes i drew upon van manen’s ( ) and smith et al.’s ( ) recommendations for transforming my exploratory notes into emergent themes. in reading over my notes, i asked: what do these notes say about the participants’ relationships with their pets, what do they say about the participants’ cancer experience, what meanings do the notes convey, what kinds of words and phrases can i use to capture these meanings? i sought to develop concise and expressive statements to condense the volume of exploratory notes while also preserving the participants’ original words, as much as possible (appendix f). once i had produced a set of emergent themes for the first transcript, i moved to the next transcript and repeated this sequence of making exploratory notes and developing emergent themes. given the inevitability of being influenced by the previous transcript, i tried to set aside my findings and approach each transcript in its own terms (j. a. smith et al., ). . . . isolating phenomenological themes in keeping with the attitude of the reduction (van manen, ), it was important for me to be clear about what phenomenological themes are and are not. in terms of the former, i considered that themes are useful for bringing together my understandings and the participants’ understandings of their experiences. regarding the latter, i considered that the process of isolating themes is not a purely cognitive or intellectual exercise (van manen, ); themes are not derived by developing codes, taxonomies, or generalizations (j. a. smith & osborn, ; van manen, ); themes are not merely constructed around a few vivid examples from the interview data (braun & clarke, ). themes must retain their idiographic focus (j. a. smith et al., ). in other words, they must be oriented towards the uniqueness of the participants’ lived experience while also remaining abstract enough to speak to the “essence of a certain type of experience” (van manen, , p. ). next, i returned to my research objectives, namely: to identify that which renders the human-companion animal relationship a unique and distinguishable phenomenon, and to describe the importance of this relationship for people with cancer. i typed and printed out the themes, cut them into strips of paper, and started arranging them. i used different colours of paper to keep track of the source (i.e. the transcript) of the themes. i identified patterns and connections by making note of emergent themes that were similar, parallel, or contradictory to one another (j. a. smith et al., ). i treated emergent themes as examples or instances of the human-companion animal relationship. i used the following questions as a guide for organizing emergent themes into phenomenological themes:  what is the meaning of these emergent themes?  what do these emergent themes reveal about the human-companion animal relationship?  how does this emergent theme relate to others?  are there temporal relationships between the emergent themes?  are there areas of convergence/divergence?  what is the overall narrative or context for these emergent themes?  how can i capture these emergent themes using a phenomenological theme? reflecting upon these questions led me to revise some of the emergent themes while discarding others or setting them aside for further consideration. in addition, i used concrete methods to identify relationships between the emergent themes (j. a. smith et al., ). in the method of abstraction, i grouped together similar themes. i asked the following questions: does an emergent theme in this transcript illuminate or extend a theme in another transcript? which emergent themes are common across the cases (i.e. transcripts)? next, i returned to the transcripts and began grouping together interview extracts that were similar in terms of content. i kept track of the extracts using the transcript ids and line numbers. i used microsoft word to compile interview extracts that supported a particular theme. aside from looking for areas of convergence, i used polarization to look for differences or oppositional relationships between the emergent themes. a third method known as contextualization was instructive for determining whether emergent themes were related to significant life events such as undergoing cancer treatment, moving residences, changing careers, or ending a relationship. through the methods of abstraction, polarization, and contextualization, i developed eight phenomenological themes that were relevant to the sample of participants as a whole (j. a. smith et al., ). i retained an idiographic focus by selecting extracts from the individual cases to show the richness and diversity of participants’ experiences (j. a. smith et al., ). another strategy used to further refine the eight phenomenological themes was “free imaginative variation” (j. a. smith et al., ; van manen, ). according to van manen ( ), this method involves imagining changes to phenomenological themes and asking whether these themes are an essential part of the phenomenon. i asked the following questions: can i imagine the human-companion animal relationship without this theme? is the relationship still meaningful if i were to “imaginatively change or delete this theme from the phenomenon” (van manen, , p. )? proposing changes to each of the themes allowed me to consider what was invariant about the themes. in working with a relatively large dataset, such as a sample of participants, it was helpful to have a measure of recurrence, meaning how often a phenomenological theme appears across the set of interviews (j. a. smith et al., ). van manen ( ) addresses recurrence when he describes a theme as an “element (motif, formula or device) which occurs frequently in the text” (p. ). i used the following criterion to define what i considered to be an indication of recurrence: a phenomenological theme was considered recurrent if it was present in at least one third (n= ) of the interviews. however, as smith et al. ( ) caution, i did not place too much emphasis upon frequency counts, instead using recurrence as a means of exploring patterns and commonalities across the interviews. finally, i looked for connections between the phenomenological themes, using the method of subsumption to develop three super-ordinate themes. phenomenological themes that shared higher order concepts were then arranged to form a super-ordinate theme that was applicable to several cases. for example, the phenomenological themes, “it’s sort of silly, but” and “it’s a sense of responsibility,” were organized into the super- ordinate theme, “pulling you out of yourself” in an effort to reflect the higher order concept of pets as providing a meaningful distraction from their illness. . . reflective methods for writing and rewriting a phenomenological text in the process of writing, i aimed to create a text that would have resonance for the reader, meaning that he or she could recognize the participants’ experiences as plausible human experiences even if he/she had not experienced them personally (van manen, ). i used the following reflective methods to transform lived experience descriptions into a phenomenological text: the experiential anecdote, the vocative, and the data-interpreting interview (van manen, ). in doing so, my intent was not to arrive at a fixed or normative understanding of the human-companion animal relationship but rather to show the uniqueness of the person’s understanding—both the participants’ understanding and mine as the writer (gadamer, ). in line with van manen ( ), i aimed for precision by using words and phrases that would highlight the tone, texture, and richness of the participants’ accounts. . . . the experiential anecdote the process of developing experiential anecdotes required a close reading and re-reading of the transcripts to identify illustrative data extracts for each of the phenomenological themes. in accordance with the criteria of explicitness and vividness, i sought to edit or condense data extracts such that the participants’ lived experience could come through more explicitly and vividly (van manen, ; whittemore, chase, & mandle, ). a second purpose of editing the anecdotes was to enhance readability. i formatted the anecdotes using indentation, single- spacing, and plain font. where possible, i retained the words that participants had repeated for the purpose of emphasis, and used dashes to show hesitation or pauses in speech. i used an ellipsis to remove identifying information (e.g. names of people and locations), as well as, to omit extraneous material such as minimal encouragers (e.g. hmm, um). i preserved pets’ anonymity by using pseudonyms from an online list of popular dog and cat names. i used rounded brackets to indicate the type of pet that participants were referencing in a particular anecdote. square brackets were used to identify words that i had added to the text to maintain the participants’ anonymity, or to enhance the readability of an anecdote. aside from using plain font, i developed anecdotes, shown in italics, based upon van manen’s ( ) suggestions for creating an experiential anecdote. these italicized anecdotes share the following features: illustrate a particular incident or experience, contain concrete details, and feature a compelling story. i produced these anecdotes by putting them into the present tense, deleting pauses or repetitions, adding personal pronouns or pseudonyms for pets, and highlighting the emotions displayed by participants. in constructing anecdotes, my intent was not to make generalizations based upon the participants’ experiences. instead, i considered whether their experiences were plausible, or, in other words, if they seemed true to what the reader would expect if he/she had encountered these experiences personally (van manen, ). . . . the vocative method while the reduction can be thought of as a style of thinking, the vocative refers to an expressive style of writing for developing phenomenological themes and experiential anecdotes (van manen, ). in applying the vocative method, i drew upon narrative devices such as alliteration, repetition, imagery, and metaphor. for example, in the phenomenological theme “it’s amazing how in evolution,” i used the metaphor of pulling on a thread to illustrate the impact of cancer upon participants’ relationships with pets and people. in the phenomenological theme, “it flickers by so quickly,” i referred to photos as moments flickering by, in an effort to describe the experience of loss. the process of transforming lived experience descriptions into a phenomenological text involved pulling out rich and detailed examples from the interviews and offering my interpretations of these examples. i used poetic devices to intensify the meaning of the text, and to draw the reader’s attention to the importance of the human-companion animal relationship. to illustrate, in the phenomenological theme, “it’s sort of silly, but,” i used descriptors for different bodily senses to capture what i referred to as “transcendent play.” in the phenomenological theme, “it’s a sense of responsibility,” i drew the reader’s attention to the home as a tableau and rich backdrop for the intimate moments shared between participants and their pets. . . . the data-interpreting interview through data-interpreting interviews, i sought the assistance of cancer care professionals and health researchers with analyzing extracts from the original interviews. specifically, i invited them to read a few anecdotes and share their impressions and insights with me. this analytic method differs from member-checking which involves returning to the original interviewees and asking them to confirm the accuracy of the interview transcripts or the researcher’s interpretations of the data (mcconnell-henry et al., ). by engaging in thoughtful and collaborative dialogue, the purpose of these data-interpreting interviews was to add interpretive insights rather than attempting to verify my findings (van manen, ). these insights helped me to revise my interpretations and refine the set of phenomenological themes (van manen, ). interview prompts included: how does this anecdote resonate with your experience? what aspects are surprising or not surprising? . . trustworthiness criteria for qualitative research in this section, i outline research conditions that helped to enhance the rigour of data collection and analysis. i discuss four criteria that were used to assess the trustworthiness of the findings. trustworthiness refers to the “quality” of the research design, or, in other words, the use of systematic and verifiable methods that yield plausible and convincing results (lincoln & guba, ; van manen, ). . . . conditions for data collection prior to beginning the study, i familiarized myself with the historical and philosophical traditions within which the study is grounded (k. a. lopez & willis, ; van manen, ). i consulted primary sources (e.g. husserl, ; gadamer, ), as well as, secondary and tertiary texts. with regards to the research design, i used a purposive sampling strategy to select participants who were diagnosed with cancer at least months ago, and currently had a cat or dog. importantly, this sampling strategy did not only apply to the eligibility criteria. i made use of purposive sampling to collect examples of “experientially rich descriptions,” meaning interview responses that contained vivid, concrete, and detailed descriptions of the participants’ experiences (van manen, ). toward this end, i made clear in the recruitment poster that i was intending to speak with people regarding ) how they experience their relationship with their pet during and after their cancer experience; ) what makes the human-pet relationship, unique and meaningful to them; and ) how this relationship is important to their cancer journey. during the participant interviews, i kept in mind that my objective was to elicit detailed stories and examples rather than opinions or beliefs about pets in general. a second objective was to gain a shared (i.e. between myself and the participants) understanding of the participants’ lived experience. i listened to their stories with openness and curiosity (van manen, ). i sought clarification when needed. i avoided rushing participants. i used paraphrasing judiciously. i opted to use silence, open-ended questions, and neutral probes to encourage participants to elaborate upon their responses (e.g. tell me more about that, what happened next?). the use of audiotapes and verbatim transcripts helped to preserve the participants’ words and verbal cues (e.g. pauses, disfluency, laughter, etc.) that accompany speech. the recruitment of participants is consistent with the goal of triangulating data from multiple sources to promote trustworthiness (lincoln & guba, ). however, rather than attempting to achieve a particular sample size or sample composition, i sought to collect a sufficient volume of concrete experiential descriptions that would enable me to explore the nuances and complexities of the human-companion animal relationship (j. a. smith & osborn, ; van manen, ). these experiential descriptions provided ample material with which to develop phenomenologically rich accounts that contained detailed examples and anecdotes. the term saturation typically refers to the point at which the data no longer reveal anything new or different from earlier interviews (braun & clarke, ). in an effort to reach saturation, i elicited a wide array of experiential descriptions from participants that captured unique and significant aspects of their relationship with their companion animals (j. a. smith et al., ; van manen, ). . . . conditions for data analysis consistent with van manen’s ( ) approach, i demonstrated objectivity by remaining focused on the overall aim of the study (the lived experience of the human-companion animal relationship for people with cancer). at the same time, i displayed subjectivity by considering each participant’s unique experiences and understandings. i used comprehensive exploratory notes and reflective questions to guide my analysis as opposed to analytic codes and frequency counts. some anecdotes were largely unedited while others were revised using van manen’s ( ) approach to constructing an anecdote. by editing these pieces of raw data, i questioned whether i was falsifying the data or lessening their credibility. once again, i returned to the principles that distinguish phenomenology from other approaches. according to these principles, phenomenology aims to show human experience in its possibility and variety (van manen, ). its understandings are meaning-based. phenomenology uses empirical material without making empirical generalizations (mcconnell-henry et al., ; van manen, ). to assess trustworthiness, i considered four criteria that are relevant to establishing confidence in the findings and interpretations of a qualitative study: credibility, transferability, dependability, and confirmability (lincoln & guba, ). firstly, i used systematic methods of data analysis, involving sustained engagement with and reflection upon the audiotapes and verbatim transcripts. along with attending to negative cases, i employed triangulation of sources (i.e. participants), investigators (i.e. data-interpreting interviews with professionals), and theories (i.e. comparison of study findings with relevant theories and investigations) (lincoln & guba, ; j. a. smith et al., ; j. a. smith & osborn, ; van manen, ). secondly, in the methods and results chapters, i provided as much detail as possible regarding the research context and participant accounts, keeping in mind the aim of illuminating other people’s experiences (lincoln & guba, ). i considered how these detailed narratives could shed light on the experiences of people in other settings and contexts. as such, my intent was to promote the transferability of the findings without claiming that the results would necessarily hold true for other population groups; the ability to generalize study findings or interpretations is not an objective of qualitative research (lincoln & guba, ; j. a. smith & osborn, ; van manen, ). furthermore, i understood transferability as a quality that is determined neither by me, the researcher, nor by means of particular analytic methods. to be clear, transferability is based upon the reader’s consideration of the text and the extent to which the study findings are applicable to him/her (lincoln & guba, ). do the findings resonate with him/her? in accordance with transferability, the findings were intended to be rich in experiential detail so as to compel the reader to reflect upon his/her own experience. in line with the third and fourth criteria, i sought to achieve dependability and confirmability by keeping an audit trail (i.e. research journal) throughout the entire research process. this audit trail helped to ensure that the findings would be grounded in systematic and verifiable procedures that could be reproduced by other investigators. i began by recording my assumptions about the experience of cancer and the human-companion animal relationship (creswell & miller, ; lincoln & guba, , ). an audit trail is also consistent with the method of the reduction as it allows the researcher to examine critically his/her role as an interviewer and analyst (van manen, ). i continued recording my reflections on the research process, documenting the methods i used to arrive at my findings and interpretations. i solicited feedback from my supervisory committee regarding my data collection and analytic methods. i also sought the assistance of two human-animal bond researchers and three cancer care specialists to improve the rigour and coherence of my analysis (van manen, ). the use of peer debriefing through data-interpreting interviews was important not just from the standpoint of intersubjectivity (i.e. shared understandings) but also triangulation (van manen, ). the knowledge and expertise of these five individuals provided a credibility check, encouraging me to reexamine my analytic methods and develop more abstract interpretations of the interview data (creswell & miller, ). several aspects of the data- interpreting interview were especially illuminating with respect to understanding my role as researcher. this method helped me to appreciate that phenomenological understandings are not fixed but, instead, are co-constructed by both the participants and me (gadamer, ; van manen, ). the data-interpreting interview was also useful for addressing the social desirability bias, which refers to the tendency among interviewees to try to say the “right thing” when responding to the interviewer (van manen, ). had i elected to undertake participant validation, for example by using the technique of member-checking, i could have run the risk of leading participants in a specific direction or encouraging them to express agreement with my interpretations (mcconnell-henry et al., ). leading participants, even unintentionally, would have gone against the spirit of openness that exemplifies phenomenology. furthermore, it would have been incorrect for me to assume that confirming the accuracy of the results would effectively determine the quality of the study as a whole (mcconnell-henry et al., ). as noted above, the criterion of dependability refers to the reproducibility of the research process (i.e. methods and procedures) not the results. chapter : results this chapter begins with an overview of the socio-demographic characteristics of the participants. the eight phenomenological themes are presented in figure . using the method of abstraction, i have arranged these eight themes into three higher level themes, known as super- ordinate themes (smith et al., ). each super-ordinate theme is introduced with an illustrative anecdote, followed by a brief definition and description of the phenomenological themes captured under the super-ordinate classification. within each of the eight phenomenological themes are detailed anecdotes and quotations, drawn from the interviews with participants. in addition, i provide interpretive insights and commentaries that i developed using reflective methods such as the vocative and the data-interpreting interview. the chapter concludes with my reflections regarding the use of photo-elicitation during the interviews. . demographic characteristics table presents socio-demographic data and cancer information collected from the nine women and five men who took part in the study. demographic characteristics participant n= age - - - - - gender female male ethno-cultural background caucasian caribbean metis highest level of education high school vocational university/college graduate/post graduate employment status employed on-leave/on disability retired relationship status single married/domestic partnership separated/divorced widowed living arrangement alone partner/children roommate/friend cancer type/primary tumor site breast cervical ovarian prostate lymph nodes liver colon intestinal/peritoneal bone marrow type of treatment(s) surgery radiation therapy chemotherapy combination of treatments above time since diagnosis < year - years + years time since last treatment < year - years + years table participant socio-demographic and cancer information as noted in table , the majority of participants were caucasian, over the age of , university- or college-educated, and living in a household with other people. roughly half of participants described themselves as married or in a relationship. of the participants who were unemployed at the time of the study, some had taken early retirement while others were on leave from work due to their illness. there was considerable variability in the type and site of cancer, with breast cancer being the most commonly reported cancer. five participants reported having a tumor in more than one part of their body. these tumors were either the result of a metastatic cancer or an unrelated secondary cancer. nine participants described undergoing a combination of treatments that included surgery, chemotherapy, and/or radiation therapy. for more than half of the participants, between one and three years had elapsed since their initial diagnosis, and most participants had received some form of cancer treatment within the past year. information pertaining to pets is presented in table . the results are presented by participant demographic characteristics and pet characteristics. demographic characteristics participant n= type of pet in their care cat dog both cat and dog fish had a pet previously yes no -- acquired current pet(s) before cancer diagnosis after cancer diagnosis number of pets single-pet household multi-pet household pet characteristics cat dog fish n= n= n= sex female -- male age < year -- -- - years -- - years -- - years -- table pet information a total of pets ( cats; dogs; fish) were currently in the care of participants. of those living in multi-pet households, participants had two, four, or six pets. the age range was to years (mage= ) for cats; to years (mage= ) for dogs; and one month for fish. participants had a variety of cat breeds including tabby, maine coon, siamese, tortoiseshell, and mixed breeds. most participants had small- (less than lbs) to medium-sized ( to lbs) dogs including the cairn terrier, miniature pinscher, shih tzu crosses, poodle mix, pug, and border collie x shepherd cross. large-sized ( to lbs) breeds were the chocolate labrador retriever and golden retriever. the breed of fish was betta, also known as siamese fighting fish. all participants reported having a pet prior to their current pet, and two participants indicated that it was another family member’s wish to have their current pet. the most common reasons cited for having a pet were companionship, love of animals, desire to give pets a good quality of life, and a perception that pets provide fun, humor, and joy. other notable reasons were getting exercise, learning life lessons, and receiving acceptance and compassion. . findings figure the eight phenomenological themes organized into super-ordinate themes . . super-ordinate theme: (dis)connecting with the journey i feel pieces of stories coming up, it’s interesting. i’m having a difficult time. i’m thinking about my journey with her after being diagnosed like when i had just gotten her. it’s interesting being on the other side of it and seeing how disconnected in many ways i am to the journey, to the cancer experience where it was so raw for so long but i’ve done so much work on it, all the retreats, support groups, day healing sessions, yoga, and breath work and everything else i’ve done have definitely gotten me to where i am now. but then adding these two (pets) into it is a whole different facet of things (female, cats and dogs). in cancer, the cells grow and multiply uncontrollably, defying normal biological processes of renewal and decline. this proliferation of cells takes root in the body, staying put or extending its reach into the surrounding tissues and organs. some cancers are classified by the the human- companion animal relationship (dis)connecting with the journey • it’s hard to erase those words • it’s amazing how in evolution • it flickers by so quickly speaking volumes with their actions • it’s a silent kind of love • it mattered that they were there • it’s like each living thing has meaning pulling you out of yourself • it’s sort of silly, but • it’s a sense of responsibility cells and tissues from which they originate rather than the parts of the body that are affected if the cancer spreads. the disease we call cancer is as varied as the experiences of people directly affected by cancer. much like the disease itself the experience of cancer often runs counter to people’s expectations about the normal course of events in their life. this insidious cluster of cells quietly dwells in the body until the silence is shattered by the words “you have cancer.” if participants were asked to draw a straight line from the onset of their symptoms to the beginning of treatment, the line would barely touch the twists and turns that they had encountered while going through the diagnosis phase. to paraphrase a participant, getting the trauma out of their body, called for swift action to remove or slow the growth of cancer. at the conclusion of treatment, participants felt as if they had been cut off abruptly and sent off into the unsteady terrain of living without the consistency and regularity of being a full-time patient. the once galvanizing force of a cancer diagnosis now seemed to lose its hold on the participants’ team of supporters, which included their family members, friends, co-workers, and health care providers. the loss of these relationships was compounded by the sense of chaos and uncertainty surrounding cancer treatment and the potential for a cancer recurrence or secondary cancer. it was apparent from the participants’ accounts that trauma did not begin and end with cancer. like cancer, having a pet underscored the impermanence of life. for some participants, watching their pets languish from illness or old age became a painful reminder of the trauma that they had endured during treatment. this super-ordinate theme captures the meanings participants attributed to their cancer experience and the importance of their relationships with their pets. the term journey is suggestive of an experience that takes place over time, with an indeterminate beginning and end. the use of a parenthesis in the title highlights the tensions that arise in the experience of cancer such as in the masking and unmasking of the disease, the doing and undoing of relationships, and the failing and unfailing grasp on moments shared with pets. relationships with pets, although not impervious to the stress of cancer, provided a meaningful connection, and one that evolved from their shared journey. participants seemed grateful for the time they had spent with their pets during treatment, both moments of quiet and stillness and those of joy and relief. this super- ordinate theme is comprised of three themes: ) it’s hard to erase those words; ) it’s amazing how in evolution; and ) it flickers by so quickly. . . . it’s hard to erase those words this theme captures how cancer is unmasked and revealed to the person (i.e. diagnosis), and how cancer is revealing in the sense of leaving the person unmasked and revealed (i.e. effects of cancer and treatment). firstly, the manner in which cancer was revealed had different meanings for participants. some described experiencing unsettling and inexplicable symptoms prior to their diagnosis. as in the comments below, participants’ concerns grew exponentially amid curious bouts of pain, fatigue, and nausea, followed by doctor’s appointments and emergency room visits: i had a problem with neuroendocrine tumors or carcinomas. it’s not easily diagnosed because it’s masked by so many other things like panic attacks…it wasn’t until a large bulge started to grow right here that they thought it was twisted bowel syndrome and so they gave me medication to relax the bowels and of course it wasn’t going away and then it started to go ischemic. i went to the hospital because i couldn’t stop throwing up…i was in a lot of pain and then they found the tumor with the ct scan (female, cats). i was starting to get some strange symptoms. i was going in and out of the doctors and nothing really came up. for the first half of the year my energy was just really starting to decline. my focus and concentration were starting to go and i was starting to look like i was six months pregnant. the doctor did a sonogram on me and i was absolutely terrified because i knew i was not pregnant. there were a lot of symptoms and that began the journey of going into see a specialist, then went for emergency surgery and four weeks later was diagnosed and started chemotherapy three days later (female, cats and dogs). these comments highlight the participants’ distress in response to the sudden onset of symptoms. these signs and symptoms alerted them to the possibility of something sinister in their body while also continuing to mask and conceal the cancer until it was disclosed to them. in the process of going through testing, participants described how their test results would come back negative or inconclusive until that which seemed inexplicable was now revealed with the words you--have--cancer. the once nebulous array of signs and symptoms, powerful and perplexing, took shape and was given the name cancer. in the words of a participant: until you have that dreaded name cancer in your body—we’re just lucky we got it in time. until you have it or somebody close to you, you don’t understand what that word means, not at all. somehow she’s (dog) picked up that something was wrong and just her friendliness and wanting to be petted. it’s all part of saying i’m here to help (male, dogs). that “dreaded name” seemed to cling to the body just like the cancer itself. as this participant stated, to truly know the meaning of this word is to have the word touch you or someone close to you. this word rang hollow when it came to pets who instead picked up on the sense that something was wrong. a second participant described the comfort she received from her dog: she gave me a lot of strength, bolstered me up into pushing through any of the fear and the kind of stories that i would create in my head, or if i would read or hear about other people’s stage iv situations…and this one oncologist actually said to me “well you might already be stage iv, the cancer might have already spread and we just don’t know.” she was very negative and after that it’s hard to erase those words. i would attach to those words and create a story based on those words. i would just get so much comfort from holding stella and stroking her and just feeling her “my little love” (female, dogs). some participants attributed their cancer diagnosis to lifestyle choices with one explaining “in many ways my experiences and my decisions created my cancer.” others believed that genetic and environmental factors had made them more susceptible to illness. in some cases, these beliefs were confirmed through genetic testing. still other participants were confronted with questions such as “why me?” and “why should i even bother?” even in the absence of satisfactory answers, participants found solace in their relationship with their pets: i was at home and i was really depressed and trying to make a decision about how far i want to go and this and that. and i looked at rocky and penny who were sleeping by my bed and i was thinking, you selfish human being, i mean you adopted them. you promised them that you’d be there for the rest of their life. just by taking them and adopting them, you made that promise to them (female, cats). for many participants, being told that they had cancer came as a shock. one participant called it “a big trajectory change in terms of life, career and pretty much everything else.” in some cases, the diagnosis happened to coincide with other significant life events such as ending a long-term relationship. in others, it was the diagnosis itself that had prompted these events. with regards to career, some participants had to go on stress leave with a few commenting that they still have not been able to return to full-time work. others reported taking early retirement such as a participant who exclaimed “it was the cancer that forced the retirement” going on to say “if i’m dying why am i working?” another retiree expressed concern for fellow cancer patients: i’ve talked to people and they say that they have financial issues. they can’t work and they don’t have any source of income and i don’t know how they can do it because there are just so many other things demanding of your body and your mind and to have this other stuff weighing on you, it must just be totally overwhelming (male, dogs). the shock of a cancer diagnosis seemed to heighten the emotions surrounding other life events. one participant recounted the precise moment she found out she had cancer, saying “i’d just gotten my dream job and it was the first day that i was there, the first hour at my new job and i got the phone call. i had surgery and took about five weeks off.” similarly, a second commented: we found out when i had a colonoscopy. and right then the doctor came back and said “you have cancer” and i was sitting there, “whoa,” and he said you have it in two places at both top ends of your colon. then he said i’ve already talked to the surgeon, and i’m still waking up from the drugs, and he said she’ll see you in two weeks so i walked out of there. i sort of woke up and i said oh i’ve got colon cancer (male, dogs). akin to the experience of being roused from sleep, life changed in an instant with the words “you have cancer.” unlike the transitory nature of sleep and dreams, once cancer was revealed, the words could not be called back; the words could not be excised from the body or radiated away. secondly, participants’ experiences during and after cancer treatment were revealing in a number of ways. at the hospital or cancer clinic, participants recalled waiting for the elevator and the long walk through dimly lit hallways. they remembered the feeling of polished linoleum floors beneath their feet, the sounds of machines nearby, and the image of a blank wall staring back at them. the loneliness they felt while waiting in these rooms laid bare the gravity of their pets’ companionship. a participant with fish said “there’s nothing more soothing than looking at a water feature when i’m trying to sleep after chemo.” another said of his dog “she’s a companion and it’s taken me a long time to realize the trauma i went through and what it caused to other people and how to try to get the trauma out of your system.” two others said: i was involved in a clinical trial during my breast cancer treatment where we had to go to the gym two or three times every week during chemo…i would come home, and her and i would cuddle up on the couch and watch a show and have lunch. i would put the blanket and she would climb up on the couch and we would just sit there for a couple hours…that really became such a routine and it was very comforting (female, cats). duke’s been very good about it and when i first had chemo there was a lot of “oh my god where’s the bathroom” and after one of those sessions he always came and cuddled me. he would get in bed with me and cuddle (jingling noise), i can hear him. he knows i go once a month to the cancer clinic and when i come home he’s always here (female, cats). notably, pets were not always seen as a source of comfort during treatment. a participant with fish said “there were times when i did feel they held me back because i knew if i went anywhere, they probably wouldn’t make it.” another said of her cat, “i didn’t take the best care of her because i couldn’t even do it for myself.” to avoid costly vet visits, a few participants recalled having to administer at-home treatments to their cats, one of whom shared the following story: i did not do well with having an iv in my arm. my treatments were five days on and two weeks off. i did four rounds of that…so when i had to give her (cat) a daily iv, that was terrifying. i did because i knew it would help flush out her kidneys but i had a really hard time with it…and it was this particular needle i would put into the back of her neck and ugh that still makes me feel sick…there were experiences i had with her that reminded me of my cancer experience and brought it back up again (female, cats and dogs). in deciding among treatment options, some participants felt moved by the resounding call to “get it out” of the body or “stop it from growing.” others discussed having reservations about their doctors’ recommendations, fearing the outcome of treatment more than the disease itself. such fears were confirmed in certain instances. for example, one participant described going into septic shock followed by a ten-day period during which he was in a coma and on life- support. another came close to dying more than once, after being overdosed with chemo and enduring a significant loss of mobility. a third described her experience by saying: when i started chemo i had a heck of a time with it. i just did not respond well whatsoever. i thought it was absolutely normal everything i was going through so i didn’t really speak up too much. i totally became that superwoman type persona and just kept pushing through until i had to be hospitalized. i started getting some energy work done through chemo and my cat loki basically never left my side…i was bedridden for most of my treatments…and she was my bestie at the time (female, cats and dogs). responses to treatment varied considerably across participants. some participants felt better after the first surgery or round of treatment, noticing less pain and discomfort. one participant, after having part of his colon removed, recalled waking up and phoning his friends soon after surgery. another who had a growth that was obstructing his ability to swallow said: as soon as i started the treatment the tumor shrunk. the oncologist was quite amazed that it actually shrunk right away…when i started the treatment i didn’t feel that much nausea or anything, i was able to eat and i ate a lot, like five meals a day, just because i had lost so much weight...and then i was starting to get healthy again but as i say i didn’t feel— like everyone said “aren’t you awfully tired?” i didn’t feel tired (male, dogs). in contrast, others fared worse, such as a participant who experienced increased sensitivity to medication, making it difficult to treat an unrelated, chronic condition. some participants reported becoming anemic following chemo. the need to consume red meat came into conflict with their values. one participant called himself a “reluctant vegetarian” while another said: i really believe that animals have souls. i go through this moral dilemma about eating meat every once in a while. i have a really hard time with it. i know it’s necessary sometimes and i need the protein because of the illness but i tend to stick to fish if anything rather than meat. eating mammals really bothers me. it’s not that i don’t think fish have souls but not as much as mammals (female, cats and dogs). the effects of treatment also manifested themselves in participants’ outward appearance. to illustrate, one participant remarked “my white blood cells dropped and my skin took the worst of it.” another said “there were kinds of disfigurations, i was doing prednisone; i had the moon face, skinny arms, and bloated belly, and [was] very self-conscious.” another talked about changes in the texture of her hair after chemo, saying “losing my hair was such a trauma, as a woman i think, it’s our hair, you look in the mirror and you’re bald.” she went on to say: i have no problem being vulnerable around these two, people, it’s difficult to not feel judged and to not take things personally and be totally fine with your confidence and body image. she’s (dog) taught me it’s okay to go out first thing in the morning in your pyjamas with no bra on and your hair is a mess to take her out to go to the bathroom. like years ago i wouldn’t be caught dead without makeup (female, cats and dogs). other notable effects reported by women were those related to the treatment of cancers affecting the breasts and reproductive organs. some women described going into menopause several years before the expected age of onset, affecting their ability to conceive children. others experienced hot flashes, changes in mood, night sweats, and/or weight gain. two participants commented: with the breast cancer, i got fortunate, there was no chemo. it was radiation therapy. the last four treatments [caused] a horrific burn. it took all of the skin off of my breasts. they were treating me as a burn victim. for eight weeks i couldn’t even wear a bra. i was doing these saline compresses three or four times a day. with the breast cancer there were two lumpectomies because the surgeon cut too close to the margin (female, cats). my tumor was quite large too about the size of a large mango so that was pretty decent. it was like i was carrying a child. i’ve always wanted to have a family and i haven’t even now. it’s been years and i’m not sure my body can handle it anymore…the emotional aspect of it has been absolutely horrible and the way my body has responded to it has not been great either. so it’s shown me a lot and it’s taken a lot (female, cats and dogs). for the women and men at the center of treatment, cancer had the effect of showing and taking from them in ways that they had not anticipated. for one participant, cancer was a “culmination of [her] pushing too hard” with treatment prompting a “continual cycle of ups and downs.” cancer revealed the cracks in what participants had envisioned for their future. some participants expressed doubt about whether there was even such a future ahead: i was diagnosed with cholangiocarcinoma, stage iv which is inoperable. i can’t get a transplant either. it’s not available for this type of cancer so they’re treating me with chemo to try in the off-chance to reduce the size of the tumor or stop it from growing so they may be able to operate. they said it’s a very long shot, it’s not successful in a lot of cases but the cancer has stopped growing so that’s a good thing (male, dogs). of the different types of breast cancer, most have drugs that are targeted therapies to keep the cancer from coming back. the one i have doesn’t have that yet. so the first three years after diagnosis are usually very stressful. there’s a lot of anxiety for triple negative patients because they don’t yet have a targeted therapy to keep it away. and it doesn’t seem to matter necessarily with staging…it’s a very aggressive cancer (female, cats). others found themselves having to deal with more than one type of cancer. one participant, treated previously for colon cancer, shared what happened while undergoing follow-up tests. he said “my gp suggested they do a bone scan while i’m in the hospital; so i go down and found out i have prostate cancer, so things seemed to progress.” similarly, a fourth participant stated: i did the chemo, radiation and then surgery and then the next four years on pills and we all thought it had gone away. then i had noticed some lumps on my head and my doctor thought they were cysts so he arranged to cut them out but when he made the first cut he realized that they were not cysts, they were cancer. so we started again and the breast cancer had metastasized to my ribs, lungs and spine (female, cats). the examples above make clear that treatment is seldom confined to a single event. even after the news of a clear pet scan or blood test, participants continually stopped short of referring to themselves as “recovered.” as one participant stated “it’s been this ongoing challenge of doctors and specialists and nobody can figure out what it is; it’s all imagined and it’s not the case.” two other comments highlight participants’ fears about cancer recurring: i have a deep-seated fear of what is going to happen. is it going to rear its ugly head again? it’s always in the back of a person that’s gone through cancer. is it going to come back? is it going to kill me the next time? that was three cancer journeys and hopefully that’s it. if you want to hear about the kitty that really made my journey so much easier, that is holly. holly went through five surgeries with me, three for cancer (female, cats). when we sign in [at the support group], we say what cancer we have but your cancer is not the discussion. the discussion is how you’re dealing with your life, having it so affected by cancer. anybody that tells you, “oh i had cancer, i’m cured,” sorry, no, no, you’re never cured. it was in your body. it’s going to be there still, somewhere. it’s like an escape when i just get away from life and go for a walk with her (dog) (male, dogs). these examples also speak to the role of pets in easing the journey and providing an escape. the story of a third participant suggests how pets act as a “bridge” when encountering people: it’s been very cathartic having her around especially as a puppy and getting myself out of the house and learning how to be a person again, how to approach life and people and do the whole face-to-face contact again. she was my bridge between that. she would greet people. i didn’t have to and the times where i really didn’t want to be seen and just hid, she would be that connection with the other person. it didn’t have to be me. i didn’t feel ashamed, not feeling okay in my body and walking down the street with her. she created a space where she was just being herself. i couldn’t do that. i’m still having a hard time with that. i’d watch her and see how she is in the world (female, cats and dogs). in feeling unmasked and exposed, pets then provided a kind of shield, enabling participants to connect and disconnect when they didn’t want to be seen. . . . it’s amazing how in evolution this theme begins with an analogy. picture a loose thread hanging off a knitted garment. a common impulse is to pull at the thread with our thumb and forefinger after which one of three things can happen. the thread snaps and breaks off in our hands. the thread pulls away as the garment begins to unravel. or still yet, the thread remains taut as the surrounding fibers become more tightly intertwined. such is the experience of cancer and its impact on participants’ relationships with pets and other people. the title of this theme highlights the notion that, despite our evolution as a species, human intellect and empathy can fall short when it comes to dealing with emotions. through this analogy, this theme captures participants’ relationships as they were breaking apart, unraveling, and becoming more intertwined. firstly, the news of participants’ cancer diagnosis had an almost magnetic pull. as one participant put it, “people came out of the woodwork” to offer support. another said that her friend built “mini stairs” to help her get into the house. over time, like the thread snapping under pressure, some relationships seemed to break apart rather abruptly. the comments below speak to changes in participants’ relationships with their health care team during and after treatment: the time i was in treatment the days seemed to be pretty full. and when you’re a cancer patient, you basically become a full-time patient trying to recover. my doctor’s receptionist said that my full-time job is to gain weight basically all the time that i could. and between eating, walking the dog and eating some more, walking the dog, eating some more, basically the day was gone…so i had no trouble filling the day (male, dogs). during the time of the treatments, in some ways it was easier because you’re very focused on the physical and you have something to do every day. you feel like you’re participating in your fighting of the disease. everybody’s attention is on you. you have the support of your oncologists and your whole team. there’s that level of support. then that ends and the oncologist is like “oh yeah, we’ll see you in six weeks” and you’re just kind of sent off…so i found it was harder once i stopped treatment (female, dogs). as suggested by these comments, during treatment, the days were full and discernable from one another. following treatment, as one participant explained, “you go into this strange place where the days just merge [and] everything becomes this sort of blur.” with regards to their significant others, having the support of a partner was important for both participants and their pets. one participant commented “during treatment my wife was with me all the time taking me down and everything. i see people coming in by themselves especially elderly people. i don’t know how they can do it.” partners also served as a welcome distraction for pets, giving them much needed attention, as one participant explained: there would be partners and boyfriends and stuff that would come in and distract them (pets) from whatever i was going through so they would get a little bit more attention from them. i had a guy who lived with me for a while and he was a really good guardian to the two of them for the period of time we lived together which was very short but he was very kind and generous to the two of them and [my partner] was really fantastic with loki. he ended up getting her a beautiful cat tree and she’d get more christmas presents than i would (laughing) half the time from him (female, cats and dogs). while some relationships endured in the wake of cancer, others came to an end. participants pointed to the diagnosis or recurrence of cancer as the catalyst for their break-up: honestly, it was hell. it ended a long-term relationship i was in. he was just about to propose and he already asked for my hand from my parents and so it seemed to be one thing after the next and the losses were incredibly great (female, cats and dogs). my ex-partner and i had a lot of friction between us, so there was a lot fighting. my refuge was going to the dog. and whenever we would fight i would just go and cuddle with the dog. that was my second relapse…i was kind of paralyzed from the rib cage down. i was told while being prepared for the mri to be prepared for the palliative type thing. i was obviously devastated. my partner was still at work. i still had to work, so my dog was my companion. it was the only companionship i received (male, dogs). in addition, friendships did not go unscathed by cancer. in a typical exchange between two people, one person says how are you? to which the other responds i’m fine, how are you? the unchanging rhythm and repetition of these phrases, provides an element of predictability. as one participant said “when you’re not sick, people ask you how you are, of course it’s just a figure of speech but if you are sick, a lot of people just avoid you, even close friends, because it’s awkward.” a second participant spoke about being in the hospital, saying “it’s funny that of my friends that came to see me are those that have had cancer or have had somebody in their family with cancer.” a third participant spoke about the loneliness people feel during treatment: you’d think people that you’ve loved and been in a relationship for a long time would be right there with you but it falls apart. people don’t know how to emotionally handle watching their significant other or best friend go through this. it’s amazing how in evolution we’ve still not evolved that capacity naturally. it seems like as soon as a person is sick, we pull ourselves away from them. you see that in the animal kingdom all the time…but you’d think with our evolved brain that we would get past that emotional-ness and into the intellectual thought that it takes to be compassionate for the person you’re with…it’s a really harsh reality to come to terms with when you get sick (female, cats). normally, a simple exchange of pleasantries allows people to interact with each other at a safe distance. when someone is sick, this distance narrows, leading some people to pull away. secondly, some relationships remained intact following the participants’ cancer diagnosis, only to unravel over time. participants’ relationships with health care providers varied in duration and intensity, with some lasting a few weeks and others continuing for several years. one participant described his nurse by saying “she would come and see me and she got me up and walking way more than any physio.” another said of the nurses at the hospital “it’s a special breed that can work in those kinds of environments, making you feel as calm as you could possibly be.” for other participants, the deterioration of the patient-provider relationship was not surprising given its tenuous foundation. one participant referred to his physician, saying “you hear about bedside manners, he was very blunt; that’s all he told me, cancer, and then sent me to this oncologist.” a second participant said “there was a lot of prejudice from the health care workers for me drinking alcohol…and judging how i’d been dealing with the pain.” a third participant said “after many times going to see different oncologists and emergency a couple of times, they didn’t think that i still had cancer and so they couldn’t accept it.” a fourth participant recounted her experience: everything had gone so terribly wrong. my specialists kept saying “this shouldn’t have happened, something’s wrong.” then when i went to see my hematologist, he went “she’s (oncologist) overdosed you with chemo.” he knew right away but she wouldn’t admit to it and that was before i actually ended up in the hospital but at that point, i was so low that if i didn’t have my pets i wouldn’t be here (female, cats and dogs). friendships and intimate relationships were more likely to unravel among participants for whom several years had passed since their initial diagnosis. some participants attributed the loss of contact and communication to a perception among people that cancer ends at the conclusion of treatment. one participant explained “other people perceive you as ‘oh well she’s fine now, she’s well now, she doesn’t have cancer anymore’ whereas you live with that fear that it might still be there.” other participants believed that some people are simply ill-equipped to deal with the emotional aspects of cancer. prior to cancer, it was not unusual for people to drift in and out of their lives. cancer put a spotlight on these relationships, and what some participants described as the inadequacy of human intellect and empathy. to illustrate, two participants said: my best friend shaved her head with me when i lost all my hair through chemo and she’s now in [another country] so we’re not very close anymore…it’s interesting when something like that happens versus now, zero people have been around. it’s this emotional aspect of things. i think people are really terrified of that. i’ve had one person stand by me through the last two years and these guys (pets) (female, cats and dogs). when you first get diagnosed you have a lot of people around but when you have cancer for a long period of time, people kind of drop by the wayside. people can’t handle the impact of cancer. they’re just not capable emotionally of being able to do that. it’s an unfortunate thing but it happens to every cancer patient. people drop away because they’re not able to handle what’s happening and your pets don’t do that (female, cats). many pets seemed undeterred by the emotional aspects of cancer. according to participants, pets stand by you because they are kept as pets. one participant said “they don’t have a choice, they can’t earn money, they can’t be on their own.” and yet, participants repeatedly expressed that pets provide “unconditional love.” one participant echoed “it was that unconditional aspect that i knew i could depend on—people aren’t so much.” even still, a few participants referred to “periods [when pets] would become a bit less bonded” to them: there were times i smelled really funny and she (cat) wouldn’t approach me after chemo. i smelled really weird and she wouldn’t give me hand licks and i felt really gross about myself …that was kind of a difficult time in our relationship and learning how to navigate that. and there were a lot of times when i didn’t actually want her around like i really did just want alone time …i remember feeling kind of wrong and dirty because of chemo. it didn’t last too long but i remember that (female, cats and dogs). my ex and i separated which was kind of devastating, not so much the separation, that had to be done. it was just a matter of how we transitioned and moved on. my biggest issue was the dog. how do we kind of share the dog? unfortunately, while i was going through the chemotherapy i was not able to walk the dog. i was kind of bed-ridden and …because i was not physically able to participate in the dog’s activities, my ex-partner became alpha male. the dog became more loyal to him than with me (male, dogs). in both examples, pets seemed to know that something—the smell of their skin, their energy level—was different, and this led them to pull away. accordingly, such examples demonstrate that even unconditional love can unravel beneath the strain of illness and separation. thirdly, some relationships neither snapped nor unravelled in response to cancer, but rather intensified as in the analogy of the thread becoming more intertwined. one participant said “when i had cancer my mum would stay with me and loki (cat) got looked after mostly by my mum and my ex would come in a lot and help out.” another said “i recouped at my parents’ initially. my parents are very close with stella (dog). they don’t see her a lot but my dad has a really close, special relationship with her.” a third said “my mom is a great part of my healing too but she lives far away so she can’t be here the way she’d like to be so i have my surrogate parents (her pets).” as captured in the following comment, support did not only involve being physically present but also being there to validate participants’ feelings and experiences: i’m learning that with my family and my partner to be okay with letting go and receiving love. i’ve been in such a fearful place for so long not just because of cancer. it would have been many other things that have gone on and being able to come back to a place where it’s like i know that i’m accepted for whatever i’m going through. they’re not going to say anything and they’re going to treat me exactly the same way is really rewarding and it just feels good (female, cats and dogs). although participants were grateful to have support, they expressed some ambivalence about relying upon their loved ones for help with cooking meals and getting to medical appointments. one participant explained “when you’re sick you don’t want to burden people all the time.” interestingly, some participants reported dealing with these concerns by helping other cancer patients and developing a wider social network, such as in the examples below: i phoned him (support group leader) and we had a good hour and a half yak and he said come and try the wednesday group. so i went and i got pretty emotional. i had a lot of tears and the three regular ladies have all gone through six operations and it’s just a whole different feeling. you just feel that you’re amongst long lost old friends that are able to talk about things and so i’m helping them now. [my wife] was pretty burnt out through this whole thing and at times i felt like i’m being a burden and all that sort of stuff and then we learned at the peer group that you’re not a burden (male, dogs). community, that’s another thing that’s become quite obvious to me. before i was working so much and i had my friends but there was an idea of always being able to do things on my own and don’t ask for help and be self-sufficient. i don’t think that’s really now the way i think. we really do need community, connection with people and to have people that have your back. you want to help them and they help you (female, cats). similarly, a third participant described how his dog has helped him to build new connections: when i can’t walk her, neighbours come in and look in on us and take her for a walk. i guess it’s my support as much as anything else. because of her i have people checking in. i guess they use it as an excuse to check in on ginger so it really is beneficial having that one-on-one relationship with her and people checking in on both of us. and the same thing goes with my neighbour who has a dog. when his dog barks excessively i check in on him if his wife isn’t home…so dogs being the alert system is unique (male, dogs). the sense of mutuality observed in their interpersonal relationships was also apparent in their relationships with pets. for participants and their pets, it was easy to give and receive love without reservation. one participant said of her cat, “we get along fine, he’s not too demanding, i’m not too demanding; there’s certain things in your life that are there so you have some stability as well.” following cancer treatment, the sheer amount of time spent with pets, as well as, pets’ attentiveness to participants served to deepen their bond. two participants commented: he’s given me a lot of comfort since i’ve been diagnosed. he’s like a constant companion for me so he’s making my journey with cancer a lot easier. i mean my wife helps too but when you’ve got a little dog that makes you laugh all the time just from things he does…since i’ve had the diagnosis of cancer, he’s just been a little closer to me than my wife. he used to be mummy’s boy, now he’s daddy’s boy…maybe i’m giving him more affection so he’s reciprocating (male, dogs). physically and emotionally you’re going through such a difficult experience so she (dog) gives you some sense of normalcy and routine. she’d give me laughter and joy because she’s got a quirky sense of humor. i guess i would have gotten through it without her but she made it bearable and she just gave me so much in that time and i think in some ways, definitely, i felt even closer to her after. we just really bonded (female, dogs). lastly, back to the thread analogy, a fourth scenario is possible in that we pull on the thread and nothing happens. this scenario reflects the experiences of participants whose loved ones did not come out of the woodwork, so to speak. one participant spoke about the importance of her pets, saying “i’m on my own, i don’t have contact with family and i don’t have a spouse or children or siblings, so there’s just so much unconditional love.” two others said: i’m important to my family but not in the same way, not in the day-to-day. he (cat) accepts me as i am in my housecoat and slippers or grumpy or happy. he’s just accepting and another living being that apparently likes you. i think that’s important for everybody to feel that they’re important or necessary to somebody or something (female, cats). the most important thing in the journey right now is they’re keeping me alive because as much as i love my daughter, there are times when i don’t always like her which is true of any human relationship when you live with someone. you love them but there’s times when their behaviour is such that you can really ring their necks. i never feel that way about the dogs and…there is no one else, no other siblings (female, cats and dogs). accordingly, pets did not seem encumbered by the same fears and expectations that people tend to have when a person in their life falls ill. emphasizing this point, one participant said: [pets] never leave you, they never leave your side and when you’re not feeling well, they’re the closest to you that anybody or any creature could possibly be and so you’re never suffering alone, you’re never doing this by yourself. and that’s another comfort that people really underestimate. just their presence in your life will give you that feeling of connectedness even when there’s not a single human being around (female, cats). pets provided this feeling of connectedness even when emotions prompted others to pull away. . . . it flickers by so quickly the photos shared by participants were revealing of their relationship with their pets. some photos documented meaningful occasions such as birthdays and christmases. others depicted ordinary events that had been repeated a multitude of times such as pets sleeping. still others were blurry and out-of-focus just barely capturing the vigorous movements of pets. with a flash of the camera, it was as if these moments had been frozen in time. drawing upon photos as living moments of experience, this theme delves into participants’ accounts as they were experiencing loss, anticipating loss, and fighting back against loss. firstly, loss was a recurring theme in participants’ relationships with their pets. more than half of participants had experienced losing a family pet in their childhood. such losses took on new meanings as an adult facing the uncertainty of a cancer diagnosis. cancer brought home the impermanence of life and the need to preserve meaningful experiences that could otherwise “flicker by.” participants documented pets through photos, videos, collages, paintings, and journaling. one participant described a memory book featuring her cat who had passed away: i got to design the whole thing which was really neat. it was really fun to do this and to go through the space of reliving what it was like to have her in my life. she had these gorgeous, gorgeous blue eyes… all the memories and experiences. i love that i have a book for her. things change over time and i forget more of those things but i know it’s important to me to take the video and the images to have of her because she’s such a big part of my life and was my best friend for those years (female, cats and dogs). a second participant described what it was like to look back at old photos, commenting: they just bring me so much joy that you want to capture that on picture to remember but then later you’ll look at the picture and it’s hard because it’s not the same as when they’re there. there’s lots of pictures of past fish that are moved on and you can remember what that feeling was like…but it’s still not the same as when they’re there (female, fish). photos of pets had a dynamic quality, retaining rich and vibrant memories. and yet, after the passing of a beloved pet, these same photos came to embody the sense of loss that participants had felt. of the participants who had lost a pet following their cancer diagnosis, most were at least one year post-treatment or were facing a recurrence of cancer or secondary cancer. one participant spoke about undergoing multiple surgeries for cancer and for knee injuries: holly was the most comforting of all our cats. the others were to a certain extent but not as much as she was. i was so worried that she wasn’t going to be there from the first knee replacement. she only lasted for three days because she was having trouble breathing but she hung in there long enough to greet me when i came home (female, cats). a second recounted how one of her fish outlived his expected lifespan despite having a tumor: the fish hung on and i knew he was with me. that one seemed really special, so intuitive. he had the tumor and everything the same time as me and survived my being gone back and forth…i had been thinking the treatment at the cancer agency is coming to an end and my fish has done this journey for me. it’s probably time for him to pass on. as much as i’d like him to stay, he passed just about the same time i got my discharge papers. and it was sort of like we were done with that chapter of our life (female, fish). a third participant described her experience with having to put her cat to sleep: when i had to put her down, that was like losing my best friend who was there for me through this journey. she was there for me two years pre-diagnosis and then hazel (dog) came into the picture…i brought hazel into the vet when i decided to put loki down. i’ve heard that animals, if they leave the home and never come back, they just continue to look for them…i had the two of them side-by-side. as the drip went in and her life drained out hazel paid zero attention to her anymore. it was interesting to observe how they see life force. after it was like there was nothing there (female, cats and dogs). the examples above suggest that the loss of a pet did not happen all at once. signs of aging became apparent with growing patches of white fur and changes in their pets’ gait and mobility. although many pets’ personalities remained largely unchanged, there was a noticeable decline in their energy level. pets couldn’t jump as high as they used to and daily walks became shorter and shorter. for participants, coming to terms with having an aging pet was entangled with the knowledge that their pet’s life could be in their hands. the same participant above said in reference to loki, “it became a bit of wanting to extend her life and i did extend it a little longer than was probably okay with iv treatments and syringe feeding; i just didn’t want to let her go.” what’s more, in the experience of cancer, losing a pet was overlaid by a sense of remorse from witnessing their pets hanging on and clinging to life for the participants’ sake. although not the same as the death of a pet, having to separate from a pet was experienced as a loss, nevertheless. some participants recalled having to leave a pet behind after moving away from their family or needing to return a pet to a friend after assuming temporary guardianship. in other cases, this kind of separation was the result of an ill-fated adoption. aside from cancer or other health challenges, the need to consider the welfare of other people or pets influenced participants’ decision to relinquish a pet. one participant commented “i attempted to adopt another cat to grow the family and the older cat said no way.” a second participant said: i found this cat that i absolutely just loved and i brought her home and i was sick right away. i missed four weeks of work…an old lady who had her, had passed away and she ended up at the spca. the vet said she was too nice of a cat to put down…so i brought her home and went out and actually spent a couple hundred dollars getting her a scratch post and toys…i just got her feeling comfortable that this was her home and she was such a great cat. it broke my heart…but i had to because i was too sick (female, fish). a third participant described how he had surrendered his dog, leo, to a friend with an agreement that leo would have a permanent home. without the participant’s knowledge, leo was then sold to a buyer on craigslist. this participant shared what happened after this experience: everybody agreed that leo was in good care so up until knowing that, i was very depressed thinking i did something really bad. he was on craigslist. there’s a lot of dog fighters who will pick up these rescue dogs and basically feed them to vicious dogs. the thought of it just terrified me. because of what happened with leo i decided i couldn’t keep a dog anymore. a couple months later, i was completely socially isolated. a friend of mine had a dog that had been abused and abandoned…so i said i’ll foster her for a couple of days and i just fell in love with her…she’s just an amazingly sweet, loving, and caring dog. i honestly could not ask for a better companion (male, dogs). as with the untimely death or relinquishment of a pet, some losses were clear and indelible while others were less tangible in their effects upon participants. for example, participants described forgetting particular memories in the years fo llowing cancer treatment, with one participant lamenting “it’s funny you lose a lot of memory when you go through chemo and i don’t really remember a lot of her as a puppy.” a second said while describing her dog “it’s hard to remember back because it’s years ago now and my memory is not so great since going through chemo and radiation.” fortunately, such memories were not altogether lost but could be recalled by looking at a photo or sharing a story about their pets. during an interview, for example, one participant whose cat had passed away suddenly exclaimed “oh i have no pictures of that—she would hug me, so she would put both of her arms around my neck and i totally forgot that actually, because i really miss that with her.” another participant spoke about losing a memory card which contained hundreds of pictures of her two cats, saying “for him he was sort of grown up but for her, it’s like losing baby pictures, it’s heartbreaking because you’ll never get that time period back.” two others described how photos helped them to hold onto precious memories: i cherish the moments. i cherish having these pictures, these experiences with the two of them. there’s little things that happen and i’m like [partner’s name] “get the phone, get the camera, we need to take a picture of this.” i can remember that because they flicker by so quickly and unless we write them down or capture them in a way, often we forget about them and how important they were to us in those moments. the important things just seem to get piled up with stress—yeah i cherish these guys (female, cats and dogs). i like to document her…i think sometimes we really think of ourselves as a family, so it was kind of a way to welcome her into the family, document that, have it to look back on. i took pictures of her when she was in her little cage at the spca. sometimes we’ll look back and remind ourselves where she came from, when she came into our lives. in a way i do feel like she has helped save my life and we also helped save her life hopefully. as i would take pictures of friends or family members, it kind of feels similar (female, cats). while it was important to safeguard memories of their pets, some experiences during cancer were better left undocumented, free to flicker by and be forgotten, as one participant explained: i don’t think i have any pictures of myself when i was lying in bed or anything like that. like those were a lot of images that i chose not to have taken i guess. i do have a few of myself when i was going bald but for the most part i did not take pictures of my experience. i just i hated the whole thing (female, cats and dogs). secondly, in looking through photos of their pets, participants remarked that it was hard to remember one moment from another. one participant said pets are “somewhat repetitive.” the experience of cancer brought these moments into suspension, prompting participants to contemplate the thought of dying. one participant said “i’m just praying that god gives me enough time that these guys are gone,” expressing concern for her pets in the event of her demise. two others expressed fear for their cats’ well-being if their cancer were to come back: i felt very protective of her because of her age and i also was really worried that if my cancer came back there’s not really too much they can do. they say it’s about a nine- month window between a recurrence and the average time of dying. so i was also really nervous that she would be left alone again and i could kind of understand how her first home dropped her off. she’s just such a sweet cat that i can’t imagine anybody giving her up so but it made me nervous that she would be left on her own again (female, cats). i really hope we go at the same time because i don’t know how i would feel if duke went before me and then you worry about what would happen if i go before duke. i know some people would not have a pet because of that but we had duke before i was diagnosed. i don’t like to think about it. he’s an important part of my life and some people might think that’s pathetic but they don’t have duke, the cat (female, cats). from the participants’ accounts, it appeared that cancer was not alone in reminding participants of the brevity and fragility of life. being a guardian to a pet also meant having to face the inevitability of loss. one participant who had lost her cat previously said in reference to her dog, “i’m terrified, this brings me to tears; i’m terrified of having to go through that with her; i really hope that she lives many, many years longer.” a second participant said: i do worry about her dying (tearful). since she is already old i know that when she does—i mean hopefully there’s lots of years left but it will definitely be a part of my life that i will always remember because it will be so tied to my cancer experience. i mean people always say if they get another pet it will never be the same as that pet or something. but her relationship with me is so surrounded and encapsulated in that experience that it will always be quite an intense memory i think for me (female, cats). another wished to be reunited with her pets in their final resting place and in the afterlife: my final wish is that all of our ashes will be put together. one of my cats passed away and his ashes will be put with mine and hopefully all these guys will be put with mine. we’re going to try and find a meadow and have the ashes sprinkled. it’s probably silly, but in my head the idea of heaven is being in a meadow with my pets, being with nature, having them all around me. there’s a wonderful poem called the rainbow bridge. that to me is heaven, to be reunited with all my ones that have gone (female, cats and dogs). while some participants retreated from the topic of death, others felt that cancer was an inescapable reminder of their mortality. one participant remarked “after i’d gotten this cat my nana had passed away from breast cancer so when i was diagnosed, that was synonymous to death for me.” a second participant said that cancer “galvanized” her, prompting her to plan her own funeral, and spare her family any added stress. a third participant contemplated the meaning of dying: thinking about dying, in a way, is necessary because our culture doesn’t really allow you to process those concepts. no one wants to talk about it. they don’t really even want to talk about you being ill. i’m glad i did have that time to think about it. it’s painful but it happens to everybody. there’s ways that you can live your life so that when you get to that time of dying, you’re not going to be regretting how you lived your life. so to be conscious of the fact that you are going to die perhaps you’ll live your life differently…when you’re facing your mortality, you start to question “what am i doing with my time, what have i done so far, what kind of life have i lived” (female, cats)? this same participant described a “switch” from thinking about dying to thinking about living, saying “i feel like i have more permission to enjoy…this is my time to be living and enjoying.” thirdly, not captured in participants’ photos were the moments that had yet to occur, moments that were often overshadowed by cancer and a sense of impending loss. cancer pulled death from the periphery, leaving it hanging over them like an ominous shadow. participants were left to confront past losses while also considering the consequence of future losses for themselves and their pets. one participant described his experience in the following way: animals are just, when you have cancer, it’s such a unique feeling. if you don’t have cancer it’s really hard to understand what the journey is like because you’re looking at mortality. every day is your mortality and when you have an animal, it takes you away from all of the stuff in here and the energy is now focused on this animal (male, dogs). although losses were inevitable in the experience of cancer, pets allowed participants a momentary reprieve from dwelling upon loss. as suggested in the following comments, pets became a “beacon of light” in some of the darkest moments of their cancer experience: i had been in the hospital about four weeks and i was really missing them. i would talk about the dogs and the therapist said “why don’t you bring them in, there’s a lot of people here that would love to see your dogs.” they came in and everybody was crying and the dogs were so excited. all three dogs were trying to kiss me and love me. they jumped onto the bed, curled up with me, and we had a nice visit. when i had left for the hospital, it was so sudden and my dogs didn’t really understand. i think it brought them some closure because they settled down after that. after they left i was really depressed. it made me more determined to find a way to get home (female, cats and dogs). i was in the hospital for days and these guys were my impetus to get out of bed and move and get home as soon as possible…it’s amazing how much they play a role in all of that...that initial impetus. when you’re really low even the faintest hope you hold onto and these guys were the hope i needed to continue to push and survive. later it became for me and everybody i loved but these guys were the beginning (female, cats). perhaps, it is not sufficient to say that pets simply gave participants hope. rather, pets were someone participants could grasp hold of when such hope seemed beyond their reach. finding hope was akin to the experience of dragging an anchor beneath a boat waiting for it to catch hold of the seabed. participants’ resolve to remain hopeful while facing the possibility of dying was a decision in and of itself, the alternative being that they would give in to the disease. two participants said: she’s been an integral part of my healing and she’s given me a lot of hope. i kept thinking, oh my god, i might actually die…there was this sense in me that, i couldn’t. i’d never considered the possibility that i would leave her. she is my little baby. i’ve been lucky that she’s come into my life…she’d probably be fine without me. she’d live with my parents but i wasn’t prepared to let that happen so she gave me that will to fight and to think “i’m going to be one of the percent that survive and thrive” (female, dogs). these guys are at the mercy of who is left to care for them and i couldn’t bear for me to go and know they’re not going to be properly cared for…they’re my reason for fighting as long as i can and to keep going. i could have given up twice now, i nearly died in february and i knew i had to fight back because of them (female, cats and dogs). a third participant talked about what it means to fight back against cancer: i’m a fighter, i like to fight and if you give me something to fight for that’s even better. at first it was for rocky and penny and now it’s for the three of us. it’s a brutal way of happening but it was a journey that has been well worth it for me…they’ve really been the reason why i fought so hard and in the healthiest way…i’ve integrated them so much into my life that they’ve become a huge part of the healing process. without them i wouldn’t be where i am right now. in fact, i don’t know if i’d even be alive to be honest or had the strength or power to make the hard decisions…it would’ve been really easy to go off into the other direction and give myself up to the disease (female, cats). together, these comments bear out participants’ fears of dying, and of continuing to live in spite of these fears. pets not only gave participants the impetus to fight but also the impetus to hope. . . super-ordinate theme: pulling you out of yourself all of her toys are everywhere. we play constantly. it’s a great impetus to get out of bed even when you’re not feeling well. they give you that willpower to get outside of yourself. it’s very easy to get stuck in being ill and when you have two beautiful little animals that pull you out of yourself and get you out of bed to make sure their litter is clean and they’ve got nice fresh food in their dishes and the floor is clean. you know that you have somebody that needs you and depends on you to be as healthy as you can (female, cats). this super-ordinate theme reflects participants’ experience of their pets as providing a meaningful “distraction” from their illness. pets took their minds off of cancer and what some of them referred to as “the inevitable,” meaning the inevitability of dying and leaving their loved ones behind. with fears of cancer progressing or recurring, participants sought to distract themselves from their illness. such a reprieve came in the form of playful exchanges with pets and participants’ caretaking responsibilities towards their pets. whether participants were actively engaged in play or simply observing their pets play, play allowed participants a semblance of routine and normalcy. play provided a way for participants to distance themselves from cancer, making laughter and silliness permissible and even necessary for healing. at times, play had a calming quality. in other occasions, play meant being patient and making allowances for chewed up furniture or broken keepsakes. for participants with aging pets, play meant coming to terms with pets slowing down and losing interest in cherished games and rituals. as with play, caretaking responsibilities prompted participants to turn their attention from being a cancer patient to being a guardian and caretaker to their pets. being a guardian required patience and understanding. it meant caring for their pets with the same degree of love and attention as if they had been a human family member. in upholding this responsibility, participants felt compelled to attend to their own well-being, knowing how much their pets relied upon them to be in good health and spirits. others saw themselves as parents, treating their pets as their own children with the accompanying joys and trials of parenting. the process of learning to anticipate and respond to their pets’ needs served to strengthen and nurture their bond. similar to play, caretaking not only helped to shape participants’ daily routines but also changed in response to the needs of both pets and people. these two aspects, play and caretaking, are described in the following themes: ) it’s sort of silly, but; and ) it’s a sense of responsibility. . . . it’s sort of silly, but the view of pets as being playful was shared by all participants. play had different meanings and expressions for participants and other people with whom pets interacted. seven facets of play are described: humorous play, predictable play, unpredictable play, mutual game play, rough-and-tumble play, instinctual play, and transcendent play. with regards to humorous play, pets seemed to have an unlimited capacity to make participants laugh. one participant remarked “i don’t whether he (dog) has had anything to do with my cancer sort of being in remission or not but they say laughter is the best medicine, so maybe he does.” pets were effective at keeping things light. pets’ silly and goofy behaviours provided a common source of laughter for people. in these moments, everyone was focused, however briefly, on what their pet was doing. when pets were present for the interview, participants often laughed as they saw their pets snoring loudly, hiding in a corner, eating a treat, or jumping on my lap. even when pets were not in attendance, participants appeared more animated, smiling and laughing as they recounted stories about their pets such as those below: stella used to go to doggy daycare…and apparently she would be the ball police. her favourite thing to do would be to go around…the daycare and collect all the balls and she would actually put them in a line and then she wouldn’t let anybody else touch them (laughing), they were like her balls. and she actually, she can flick them. she puts them in her paws and she puts it together and they fly out. so she can actually entertain herself quite well with them. that’s kind of her party trick i guess (female, dogs). rocky is a [certain breed] and they’ve got a very distinct character like they’re very playful, very needy, and one of the descriptions is, the males tend to be clownish (laughing) which is rocky to a tee. i mean you just couldn’t get more clown-like when he’s in that kind of playful mode. you’ll play mousy-mousy with him and he’ll get all excited and everything and then he’ll scare himself and he’ll run away. it’s like he runs away from stuff but it’s not the toy, he scares himself, it’s just hilarious (female, cats). a second facet of play that elicited laughter was the unrelenting predictability of pets. take the analogy of a comedic joke. humor is often heightened by the unexpectedness of an effective punchline. however, it was as if pets had mastered the art of comedy, eliciting boundless laughter at the same old jokes and often with no punchline. participants delighted in being able to anticipate certain behaviours from their pets after years of studied observat ion. examples of recurring behaviours from cats were: sleeping with a grimaced expression, drinking from the sink faucet, making funny poses for the camera, purring excitedly, and favouring particular toys to the exclusion of others. examples from dogs were: moaning when it was time for a walk, hiding under the bed at the sight of the nail clippers, nudging the participant’s hand for a treat, refusing to give a ball back after fetching, and biting the garden hose. as evidenced by their wagging tails, boisterous barks, and resounding purrs, pets displayed an infectious zeal for seemingly mundane routines. with pets, everyday occurrences could take on the whimsy of a time-honoured tradition or battle of wills. two participants shared the following stories: if you’re cleaning the deck, sadie always has to help and same if you’re vacuuming the house, she just started doing it. she chases the vacuum and she just barks her head off, ruff, ruff, ruff and she’s running around. she makes the job longer but it’s a lot more fun. you see down here, if you sweep the deck, one of her favourite things is, she just grabs the broom. i don’t know why, even if you’re raking the leaves she’s got to come out and grab the broom…like usually you’re in a hurry, you only have so much time…but you don’t mind because the dog needs exercise and she needs activity (male, dogs). the other thing she does, it always makes me laugh, whenever we’re out on walks she tries to eat food all the time and so i tell her “don’t eat that” and i tell her not to do it. and then what she’ll do is she’ll put it in her mouth and she’ll just pretend that it’s not in her mouth and then as we start to walk along i’ll see her turn her head and (laughing) she’s eating it without showing me, she’s quite sneaky that way and she never forgets where there’s food outside. she’ll always want to go to that area and she’s also exceptionally stubborn so…she just won’t walk certain directions and she only usually likes walking downhill (laughing). she has some strange little desires (female, dogs). thirdly, in some instances, it was the apparent unpredictability of their pets’ that participants found amusing. participants repeatedly described being surprised by their pets’ behaviour. common descriptors for pets included “trickster” and “mischievous” such as the case of a cat who would camouflage herself under pillows and suddenly pounce at her human caretaker while bearing full teeth and claws. another recalled how her dog seemingly ignored a box of chocolates for weeks only to surprise her one day by climbing on the couch, devouring the last piece of chocolate, and leaving the box empty and crumpled on the floor. a third participant shared the story of an eventful exchange between her dog and a neighbour’s dog: one time recently we’re walking along and rosie is minding her own business and this sweet lady comes up with some little toy dog. the dog comes up and starts to sniff and poke its nose into rosie and bark. after several seconds, rosie turns on this dog and goes “rah” and puts her paws on top. she’s not biting the dog but she lets out some rather intimidating noise and pins it to the ground. the little dog stops and the lady freaks out and i burst out laughing and start apologizing and take rosie away. i remember saying something like “i don’t think she wants to play” and i just could not stop laughing. that lady was not reading signals at all. rosie didn’t do anything harmful to her dog except teach her a lesson. so we have the occasional moment like that where it’s us against the world. we totally get each other and that’s very fun too (female, dogs). along with being a witness to their pets’ humorous antics, participants described instances of mutual game play between themselves and their pets. games had two notable features, namely, mutual engagement and movement. some games were brief and unstructured while others had rules and expectations. examples of unstructured games are provided below: he likes to play, we play tug all the time. he’s got lots of chewy toys, plush toys and he likes to play tug with me so we play tug until he tires out and goes and lays down for a while or i throw his toy. he likes playing fetch and he brings it back and then we tug some more and then i throw it, so yeah. he’ll play with other dogs but one-on-one usually not in the dog park so that’s about jackson in a nutshell (male, dogs). duke has his little rituals like my friend there, she is aunty scrubbler because when she comes in, she scrubbles him. he lies down there and she has longer finger nails than i do and he loves that. and then sometimes i’ll pick him up and say ‘i’m going to scrubble your tummy’ (low and booming voice) and just little things like that (female, cats). examples of games involving rules include the following: we have this game where this carpet gets laid out and vacuumed. then at night time she pulls it all up. she sharpens her claws on the under carpet so there’s little blue pieces of foam everywhere and i come in and go “penny did you make this mess” (animated voice) and she looks so proud. so i clean it all up and she gets all mad at me and at night she rips it all back apart again. it’s become our game, it’s a perpetual game for her but she has all her toys out. everything is all over the place. we’ll put them back in a pile and they’ll be back out overnight again. i’ve never seen a cat play like her (female, cats). when i couldn’t really walk a heck of a lot my cat was an awesome goal tender. i would take a little foam ball throw it down the hallway and she’d bring it back to me, she was like having a dog it was really bizarre…she was an awesome goal tender and we would often play ball down the hall bouncing the foam ball. she was super quick, she’d jump three feet in the air and would catch this. it was unbelievable (female, cats and dogs). peek-a-boo is one of their games. so when i look at him, he gets excited and will look and then kind of go away. he’ll do a loop around his bowl and come back just stopping right before me to check to see if i’m looking and then if i look he’ll go the other way sort of in a circle, come back again and stop…and then when i look again, he goes back around, so we play this game (laughing). it’s sort of silly but they do this (female, fish). in general, pets tended to rely upon subtle cues to initiate play such as making eye-contact, crouching down, or growling. descriptions of these games are as follows: if i’ve been out in the car, i come back through the basement and he’s usually down there at the basement door, he must hear me coming and there’s steps down to the basement and he’ll sit at the bottom of the stairs and…he’ll wait to be petted and have his head scratched and make like he can’t possibly climb these stairs (exaggerating) by himself so you go to pick him up and he races up (laughing) yeah so he has his habits (female, cats). one cute little quirky thing about holly was when we would have staring contests. it was usually me that gave in and looked away. she would sit on the cat perch beside my recliner and stare and stare and stare at me not moving a whisker. i would say “holly stop staring at me, you’re creeping me out.” it did not work and this would go on for the longest time. it was like she was playing a game with me. she just wouldn’t waver from her stare, and i said “you’re nothing but a demon kitty” (laughing) (female, cats). these examples highlight the importance of being mutually engaged. both parties had an end goal and needed to act in certain ways to fetch the ball or win the staring contest as it were. mutual game play was especially important for participants who were on-leave from work or largely house-bound due to their illness. participants believed that being physically active, even for short periods, was beneficial for them and their pets. despite experiencing pain and fatigue, participants felt compelled to take their dogs for walks or visits to the park. indoor cats were seen as needing more play time and interaction compared to outdoor cats. play provided the participants with a sense of purpose and routine, helping them contain their worries. one participant said “it’s made my life richer, calmer, less anxious; i feel an unconditional love, laughter, humor, sense of peacefulness, connection and enjoyment; it feels safe.” a fifth facet of play was “rough-and-tumble” play, wrestling, or play fighting. to illustrate, one participant said that his son would often wrestle and tease their dog whereas his daughter tended to hold and cuddle their dog. his dog seemed to be tolerant of both types of play. likewise, a second participant said that while her partner would tease their cat until she ran away, she tried to be mindful of her cat’s “subtler looks” to avoid pushing her “to a place of not being happy.” a third participant described how her cat would quickly escalate from playing gently to clawing and biting her in what she called his “play-play” or “killer” mode. she often tried to deter her cat from getting too worked up whereas her roommate would encourage this behaviour. rough-and-tumble play was seen as more acceptable when pets were playing with other animals or when pets were known to enjoy this kind of play. illustrating the former case, one participant proudly exclaimed “my dog can hold her own” when playing with other dogs. regarding the latter, another described her cat’s curious enjoyment of a particular activity: holly was the one kitty that had perfect balance and never slipped. she would jump over two railings to get to the neighbour’s side. holly loved to be swung all around the room in her nylon tunnel, long it what would be a five, six foot nylon tunnel. all the time i was swinging her i would say “zoom, zoom holly” and as i swung her higher and faster she loved it, she was the only one of our cats that wanted to play like this (female, cats). somewhat related to rough-and-tumble play is instinctual play, meaning pets’ tendency to engage in dominant (e.g. pouncing or mounting another animal) or submissive (e.g. bowing or rolling onto their back) behaviours. for example, one participant reported that her fish would expose their bellies to her during play as a “sign of submission” and trust. a participant with an outdoor cat, recalled “running around in [her] nightgown with a towel trying to catch a mouse in the middle of the night.” another reported that her cat was “quite feral” when she adopted her, explaining “she would attack me in bed and run after my ankles and i have plenty of scars to show for this one.” yet another described his cat in the following way: i think it’s instinct, i think it’s bred into the breed. he’s a hunter. there’s other cats who might be docile but this guy is a hunter. and you see evidence of it. he will sit there for hours and i feel there’s no way he can catch a bird but he will sit there for hours and you go somewhere and there is a bird carcass …and it’s uncanny…he will sit there and watch the raccoons and the raccoons will be in the yard and he will be sitting there and sitting there. so long as they don’t make a move, he won’t make a move (male, cats). such hunting behaviours, though regarded as acceptable for cats, were generally discouraged in dogs. for example, one participant talked about avoiding tug-of-war games with his dog to maintain his position as “alpha” and prevent behavioural issues such as aggression. another lamented about her dog’s uncharacteristic display of aggression on a particular occasion: i’m not proud of this whatsoever. she attacked a gosling and harmed it to some degree and i felt very responsible like there were kids around. it was just a nature thing that happens but i didn’t have full control of her and it really brought me to, as much as we train and domesticate them they are still wild animals at heart (female, cats and dogs). a seventh facet, transcendent play, refers to occasions when participants ventured outside of their homes with their pets. in some instances, transcendent play meant being an onlooker to their pets’ lively pursuits and athletic feats while in others, participants were actively engaged in play with their pets. transcendent play was the kind of play that happened when participants were absorbed in nature with the sights and sounds of leaves rustling, blades of grass crunching, wind blowing through the trees, wet sand sinking below their feet, or puddles rippling with each drop of rain. the following comments provide some insight into this facet of play: walking out in the forest with a dog just makes the walk even so much more profound. you take them with you and…it’s like having a small child with you. it’s seeing it through a whole different set of eyes. yeah, such a good boy, such a good boy (whispering to her cat), what do you think rocky (cat grunts) (female, cats). i’m very grateful to have her and to have those experiences with her…and she pulls me along (laughing), like hiking up that mountain the other day i was like i don’t know…if we can do this and she’s like “come on mom lets go”…it’s like i get to be a kid again. i get to re-experience maybe things i didn’t do a lot of or feel comfortable doing when i was little so to have this creature that’s like a kid all the time and never really changes from that. it’s like being able to re-experience that and i know with that my partner as well it’s really increased an element of fun and play into my life (female, cats and dogs). given the importance of nature, transcendent play was more common among pets who were given access to outdoor spaces. even among indoor pets, participants found ways to bring nature to them. one participant said that she prefers to put live plants in her fish bowls, explaining: it’s very beautiful because they glide and so i try to sort of strategically arrange their plants because he needs leaves as sort of shelves to sit on and also to hide in for privacy but also then i want to allow him enough room in there to be able to swim and have him glide and it is really beautiful to see them go across (female, fish). in the case of cats, time spent outdoors meant playing on the balcony or backyard. some participants felt conflicted about letting their cats go outside due to the threat of wildlife. one participant reported that her cat had been injured twice, likely following a confrontation with a raccoon. another expressed guilt, saying “we’ve taken her on a couple of leash trips outside to the park and i need to do that more often because i feel bad that they just get stuck in these concrete places.” despite their reservations, all but two of the participants did in fact let their cats out regularly. one participant described his cat by saying “he does have his wild side…it’s been a real problem keeping him in, especially in the nice weather, he will scream.” another said: he’s nocturnal and i’m nocturnal…he goes out and has his, whatever cats do outside at night, and then comes back in. that’s our routine. i thought that duke was going to be an indoor cat because some people have the opinion that if you let your cat out you’re a bad cat person because they could get run over but duke did not want to stay inside. my husband who was a great gardener and loved being outside would be out there. duke would be at the front door with his paws out there going (groaning sound) so my husband thought it was cruel to keep him in so he became an outdoor cat (female, cats). in the case of dogs, play tended to spill out into a wider range of recreational spaces including parks and beaches. all sense of time was lost as participants watched their dogs shake off their outercoat of domestication. one participant said of his dog “she’s like i’m outside now, i’m a wild animal, i’m not a pet.” a second said that “being out on the earth and being around the nature” had a revitalizing effect upon her dog. another recalled how his dog immediately took to the water, remarking “we were afraid that she would just swim away and never come back.” two participants commented about the significance of going to the beach: she actually hates going in the water...but what she loves is barking at the waves and running in and out on the sand…it’s so funny to watch her, she just looks hilarious (laughing). it’s like she’s sort of managing the waves and she seems completely in her element like she’s full of this energy and full of life…i’d be able to take off her leash and just see her just go full power, like she’d go a hundred miles an hour, it was pretty fast and the sand would be flying up in the air and she’d just be going. it’s like everything unleashed and it would give me this real, i don’t know, incredible joy (female, dogs). the waters tend to be very peaceful and the dogs race up and down the beach. you know max, he’s a very calm dog at home but he gets here and he just lets loose and runs up and down the beach. he’s scared of the water which is hilarious but he gets in there and digs lots of holes. daisy and molly, their favourite thing to do down there when it’s a hot day is to go in the water up to their necks. that water is pretty cold but they just love it and they get in there and hunker down. then a boat comes down and and they run off again. the beach is the one place i can get ellie to run (female, cats and dogs). participants described feeling better after being outside with their pets. as one participant said “you get a better outlook on life when you’re outside more than sitting inside all the time.” . . . it’s a sense of responsibility many participants found it deeply humbling to know that they were responsible for another living being. others expressed that they would not have made the effort to heal without their pets. this theme captures the responsibilities of caring for pets as a parenting experience, bonding experience, and restorative experience for participants. firstly, being responsible for a pet meant keeping them safe, happy, healthy, fed, and groomed. as one participant stated “they are bred as pets, so we are responsible.” another said of his cat “he didn’t ask to come into our family; we went and sought him out so we have to look after him.” while it was not uncommon for participants to use the word “pet owner,” many felt that the terms “parent” or “guardian” more aptly reflected their relationship with their pets. a participant with children said “they’re like my kids, they’re who i talk to, they’re who i administer to.” a participant without children commented “[when] you have a dog, you basically have a kid and they don’t grow up right.” two others made contrasts between pets and children: when i have to care for her there’s less focusing on myself. i want to keep her safe and it takes some of the focus on your own health away from you. at the same time because i don’t have children it’s not a stressful thing. there’s not some of the stress that comes with having kids that you have to be continually there. i just have to open up a can of food, it’s much more simple. i can’t say she’s similar to having a child but there’s probably some similarities for having another being to care for (female, cats). dogs are stressful like anything else. you can love your children but they’re still stressful. and she’s just been a huge support in my life. i honestly couldn’t imagine my life without her. some days i wish i didn’t have a dog. i would just go and kind of do my own thing, but coming home and having her there is absolutely amazing. it’s absolutely crucial, that companionship…just having that one-on-one with somebody (male, dogs). for participants, being responsible for their pets’ well-being stirred within them a mix of emotions from fear and doubt to pride and contentment, as demonstrated in the comments below: and i do remember feeling this intense kind of fear and panic that i suddenly was now responsible for this little creature here. and it’s learning the process of being able to communicate. so i found that…it took time and just learning the best way i could take care of her (female, dogs). it creates quite a bond for one thing and trust between the two of us and there’s meaning for me as well to be responsible for her and to be the guardian of her life right now and make sure that she’s kept safe and healthy (female, cats and dogs). participants’ beliefs about parenting seemed to have their roots in early memories and experiences. one participant said “we grew up with dogs and had lots of animals when we were children and we always felt very passionate about dogs in particular.” two others recalled being drawn to animals since their childhood: i’ve always had a relationship with animals, always (emphasis), my whole life. i was the kid that went out and rescued kittens and brought them home, but maybe that’s different because i’m more in tune with them and understand [them] than somebody who has never had a pet and never understood (female, cats and dogs). every cat we’ve ever loved has taught us something. they all have their special quirks, their own individual personality. it’s like having children. they’re our four-legged children and that’s how we think of them. i’ve had cats all my life, we did have dogs…but from the time i was living on my own i always had a cat (female, cats). other participants reported growing up without pets or not being allowed to have a pet. interestingly, the parents of participants who had been adamant about not having pets went on to acquire a cat or dog in the years after their adult children had moved out of the family home: when we were younger, my dad didn’t want us to have pets, particularly cats. now he loves cats, it’s so weird but when we were kids we weren’t allowed to have cats or dogs. the first thing i did when i moved out was i got a cat and it’s been a huge part of my life ever since. it’s my affection for cats. i’ve always had an affinity for them and so when i adopted these two it was for the mutuality…that’s why i went to the [animal shelter] because i wanted to adopt cats that really needed somebody (female, cats). in contrast with the previous example, a third participant described enjoying the company of cats and dogs as a child, only to have to avoid them in her adult years. a combination of allergies and the effects of cancer treatment left her with a compromised immune system. as she explained, “i would play with other people’s pets but then i’d get sick and be covered in hives.” as we delve into this parenting experience, imagine the home as a tableau of people and pets engaged in various caretaking practices. picture the kitchen as the site of meal preparations and gatherings; the living room, with cozy couches and blankets, as a space for rest and refuge; and the bathroom, with its bright lights and floor tiles, as a place where pets often accompanied participants in some of their most intimate and vulnerable moments. within these vivid tableaux, these static images would come to life as participants paused to look at their pets, holding them in their gaze, as they scanned their pets’ face and body. one participant shared her experience: they’re stuck in this bowl and they’re whole world is me. so that’s why i feel it’s so important to connect with them several times a day so that they’re not just sitting there because…i’ve tried to give these fish the best life i could and it’s been my therapy and in return they’ve blessed me tenfold (female, fish). another emphasized the value of these intimate moments through the practice of grooming: touch is really important, she’s so soft. it’s so nice to touch her and there’s kind of a symbiotic. i know she feels good if i touch her and pet her and brush her with her comb and then that makes me feel good. she’s so soft it makes me feel good that i can keep her healthy by relaxing her and combing her hair out so she doesn’t get hairballs and throw those up. for me the tactile nature of it, it’s so soft, it makes me feel better (female, cats). secondly, participants spoke about caretaking responsibilities in the context of their overall affinity toward animals, and their unique bond with their pets. this affinity for animals led participants to welcome a pet into their home, and yet bonding meant something quite different. in describing this distinction, one participant made reference to therapy dogs, saying “meeting somebody else’s dog is not at all the same as having your own dog.” a second said: i think the hardest part was when i was in the hospital and after my surgery because i couldn’t see her and i couldn’t be with her and also when i would go and get my chemo treatments because they’d bring other dogs to the hospital and it would irritate me because i would want stella to be there with me, but she wasn’t allowed (female, dogs). to explain the importance of bonding, some participants described feeling an immediate or instantaneous connection with their pet. as one participant said “as soon as we saw rocky that was it, we fell in love with him…when we picked him up he was nuzzling under the chin right away, he was super affectionate.” another summarized her experience accordingly: there’s a special bond between pets and their guardians and we have been blessed to experience this with ours. our kitties currently and all the ones no longer with us have given of themselves wholeheartedly to us. their love for us has known no boundaries. we have been so fortunate to share our lives with such wonderful pets. we cannot imagine life without our most treasured kitties (female, cats). in addition to displays of love and affection, the element of fate seemed to heighten the experience of bonding with a pet. participants spoke about events in their personal life such as beginning a new relationship or overcoming challenges with substance use, and how these circumstances came together to make it possible for them to welcome a pet into their life. one participant stated “dogs come into your life when they’re supposed to.” offering her perspective, a second participant shared her experience of bonding with her cats: it’s unconditional love. it’s not even like any human interaction because, the love is just, for me at least, an automatic bond. and i really have always loved animals but with them, i hate using the word pets but they’re more like my children…the relationship i have is much more like children. i coddle them and love them and cuddle them and it’s just [an] absolute and total love, that’s pretty well what i can describe it as. i look forward to when i get home…when i’m not feeling well, they’re right there with me (female, cats). other participants remarked that bonding took time, often months and years. one participant said of her dog “it wasn’t like i just got her straight home and i immediately felt this overwhelming love, i didn’t necessarily, it’s like that love had to develop as my relationship and bond grew with her.” bonding tended to occur through daily caretaking responsibilities such as: feeding pets, taking them to relieve themselves, and providing them with a space to sleep and rest. furthermore, caretaking often went beyond a pet’s basic needs. for example, some dogs held sway over when and how often they would go for walks. cats who were resolved to avoid using the litter box were let out at their discretion. in regards to feeding, dogs were seen as less discerning about their food preferences, with a few having some unique predilections. for example, one dog would happily crunch away on her hormone pills without any complaints. another dog would eat discarded marijuana joints off the street, getting stoned in the process. some cats had specific feeding challenges. for example, one participant recalled trying to feed her cat after being injured by another animal, saying “i got some kitten food and watered it down. we were syringing it into his mouth, force-feeding him and it took a week before he started drinking water on his own.” a second described the feeding regimen for one of her cats: they call her a special needs kitty…and the first year of her life she’d be eating her food and she’d bring it up right onto her plate and it hadn’t even hit her stomach. our vet finally found out she was born with a narrow esophagus. she’d be eating hurriedly and the food would just “whoop” out it goes. so he says feed her on an eight inch raised bench many meals throughout the day. it’s lucky i was working from home…so i could every four hours, a heaping table spoon or else she’d starve to death (female, cats). providing a contrasting example, another participant talked about how her fish altered their eating habits when she was travelling frequently for radiation therapy: i had somebody come in and feed them every day and they were fine throughout this. i’m amazed because that’s never happened before. they usually don’t eat for anybody else but they did. it’s like they seemed to know that i needed them here for when i was done [with radiation] and for when i was home on the weekends (female, fish). thirdly, participants viewed their responsibilities towards pets as a restorative experience, helping them strive toward healing and recovery. participants recalled needing to remain calm while struggling against the uncertainty of not always knowing what their pets needed. participants felt helpless while watching their pets throwing up or having a seizure without any foreseeable cause. as one participant said, “you worry about them when they’re not feeling well, and part of you is wounded as well.” another said “when they get sick and because they can’t talk to you…it’s just kind of devastating because they bring you so much happiness.” participants were at a disadvantage having to look for signs as to how their pets were feeling. pets too were at a disadvantage seeing their once healthy human companion beset with fatigue, nausea, and pain during cancer or other types of illness. as one participant commented: with loki honestly i was just a robot for years. i didn’t know what i was doing and i didn’t do a great job of it when she was around. i was not home enough with her. i felt quite guilty as her health started to decline. before i was sick i was a healthy twenty something year old. i was out and about a lot and her health was not good when i first got her. she was thin and not well. so for me to rebuild her health and then thinking about what i went through just a year or so after, wanting to rebuild mine…there was a lot of times i didn’t want to play with her anymore. i didn’t have the energy for it so it’s been very different between the two (cat and dog) of them (female, cats and dogs). just as pets could not communicate in words that they were sick or in need of help, participants could not simply tell their pets that they were trying to heal and recover from cancer. they had to show them. even the seemingly small act of getting out of bed each day was revealing of their commitment to caring for their pets. as one participant said, “this morning i was like, i don’t want to get out of bed, she just jumps straight on to my chest. it’s like okay, it’s time to go out. i’m hungry so get me some food.” similarly another said: and duke is very good at making sure i get up in the morning because if i don’t he comes and pats my face because he wants to be fed and i know i have to feed him because he’s my responsibility (female, cats). moreover, participants discussed making lifestyle changes that they saw as beneficial to their health. examples were eating a healthy diet, taking nutritional supplements, reducing their alcohol intake, increasing physical exercise, and using organic cleaning products in the home. one participant stated “we try our best to give her a healthy life because i think it’s an extension of your life…she stays healthy, you stay healthy.” a second said “i feel very responsible for her health which in a sense is a reflection of my own,” going on to say: especially with having hazel in my life, i’m not sure what it would be like without her regarding my health. i’m not sure i would have made the effort that i have and been consistent with reaching for a better space in my health. i want to be out and having fun with her. i want to be out and going on these hikes with her. i want to be feeling better so that she gets to do these things (female, cats and dogs). with regards to diet and nutrition, some participants discussed choosing organic foods for themselves and their pets, and treating ailments with natural remedies such as essential oils. others stressed the importance of cutting down on sugar, fat, and toxins in order to reduce inflammation in their body and slow the growth of tumors. to illustrate, two participants spoke about the importance of their pets while they were dealing with alcohol addiction: when i gave up drinking i went through a lot of depression and some other mental health stuff around some pretty serious trauma that i’d experienced so she (dog) was there through a lot of tears and a lot of my own healing. so in some ways i feel like when i had this cancer experience she’d already sort of been there with me through so many emotional experiences that we already had that deep bond and connection (female, dogs). i now regret that i drank at all when i first got them. you kind of look back at it and go “i could’ve been so much better of a parent.” but they were the first thing i thought of when i got home from work and i played with them all the time and cared about them so i don’t think i ever neglected them when i was drinking because they were more important to me than even i was. when i got sick, they were definitely the reason why i fought so hard to start off with, and they still are the major reason i continue to fight so hard (female, cats). from these examples, it seemed that pets were not only there to witness trauma but also provided a window into what motivated participants to heal from trauma. in the case of exercise, many participants believed that walking their dogs was mutually beneficial with one participant calling it “part of the treatment and recovery.” others said that they would feel guilty if they didn’t take their dogs for a walk. one participant stressed “you can’t sit at home and feel sorry for yourself when you’ve got a dog looking at you saying it’s time to go.” another said “as you get older, sometimes you feel you’ve become a bit sedentary and she pushes us out of that.” two other examples highlight the benefits of dog walking: i’m sure for myself that my health is much better because of walking the dog…in some ways it gives me a feeling of pride in my own accomplishment that we are getting out with the dog and making sure she gets exercise and it shows some fortitude on our part. like, it’s pouring rain and “so what, you got to go out.” it’s interesting when we walk up to [the park] this morning, there was a lot of people there but if it starts pouring, it just clears out. no matter what we’re still going to be there…it’s like a badge of honour to say that we have a [dog] and we walk her (male, dogs). she’s certainly been good company and fun for walking. it kind of gives you an excuse because you have to get all this exercise and having the dog makes it imperative that you get out and do all of that walking because it’s for the dog too and the neighbours don’t that think you’re going in and out of your house like a yoyo for no reason (female, dogs). taken together, the decision to get up in the morning and feed and exercise their pets was the embodiment of participants’ attempts at healing and recovering from cancer. caring for a pet was not only a source of bonding but also renewal and restoration. . . super-ordinate theme: speaking volumes with their actions their presence in my life made me heal faster and in a much more profound way. it would have been a really lonely journey without them and i’m not sure if i would have had the strength to do it on my own. with them being part of the whole process—i mean i still have cancer but i’ve achieved a level of healing that i don’t think i would have done on my own without their help, their presence, their love. it’s an unconditional love. it’s a very profound, very silent kind of love. they never come out and say “i love you” like a human being does but their actions speak volumes (female, cats). this super-ordinate theme delves into the complexities of human-pet communication. for participants, the knowledge that their words and actions could undermine their pets’ well- being made them more mindful about their tone of voice, choice of words, mannerisms, and body language. participants tended to see their pets not as inanimate vessels, passively absorbing their emotions, but rather, as intuitive confidants who were no less vulnerable to the sting of harsh words and sounds. accordingly, participants often spoke to their pets using an exaggerated and animated form of speech known as motherese or baby talk. the purpose of motherese was to acknowledge pets, and encourage their involvement in everyday routines such as sitting down for coffee in the morning or cuddling on the couch to watch tv. being in their pets’ presence was a tangible reminder that they were not alone. the ease with which participants could talk to their pets, along with the comfort of knowing that they didn’t have to talk, allowed participants to experience both companionship and solitude. the term language typically brings to mind spoken and written forms of communication. participants and pets often communicated with each other through nonverbal and intuitive means. the language of the human-pet relationship could be understood as a means of exchanging care and affection. human-pet communication was subtle, yet explicit in the sense that it was comprehensible to both pets and people. such communication relied upon much more than the exchange of words to facilitate mutual understandings. in fact, words served as a way of communicating intimacy inasmuch as they were an impediment to such intimacy. one important mode of nonverbal communication between people and pets was their physical nearness or proximity with one another. proximity seeking appeared to be fluid and dynamic, with pets most often establishing the parameters for these interactions. even when separated by walls and floors, participants were very conscious of where their pets were in the house. likewise, pets seemed to have an uncanny awareness of when to seek physical contact and when to keep their distance. as highlighted in the following themes, pets had much to say through their physical proximity, mattering presence, and capacity to tune-in to others, respectively: ) it’s a silent kind of love; ) it mattered that their pets were there; ) it’s like each living thing has meaning. . . . it’s a silent kind of love for participants, the invariable question of what their pets were thinking and feeling, stirred within them a profound sense of curiosity and attentiveness to their pets’ subtle looks, sounds, and gestures. in the words of a participant, “i’m always wondering, it’s like that constant mystery of how they think.” another described the relationship as a “one-on-one love and affection without having to say anything—it’s so intuitive.” the language of the human-pet relationship could be most aptly described as an “unspoken connection.” this theme is comprised of two facets that illuminate the dynamic nature of human-pet communication: developing intimacy through proximity and distance, and being explicit without having to speak. firstly, human-pet communication was manifest in the degree to which participants and pets maintained physical proximity. proximity could mean simply being in the same room, or experiencing the kind of closeness described by a participant: “she would lie down on me and then we would have some sort of intimate time and just exchange care and love.” participants derived comfort from the softness of their dogs’ fur and the warmth of their bodies. similarly, dogs yearned for closeness with people. one participant said “[with] max, i cannot lay down for a nap without him being right beside me; he curls up in the small of my back and stays there.” another described his dog by saying “he’s a lapdog…he always wants to be part of what’s going on.” a third said “we joke and call her shadow because she just follows me around the house.” examples of proximity were not unique to dogs. fish readily followed the participants’ gaze and movements. one participant said “the fish can be sitting there and as soon as they know you’re looking at them they start swimming like crazy.” in the case of cats, some were quite discerning, only willing to approach a select group of people. others cats were eager to socialize, expressing affection by curling up with participants under their chin or sleeping on their chest. one participant said referring to her cat “she liked to come under the covers and she would push her little warm paws under me and it was just such a comfort.” a second said “if i’m cleaning, they’re with me the whole time, [my friend] calls them my entourage.” a third commented “she was a total lap cat and loved to snuggle, so it was having that affection when i really didn’t want to be touched by anyone else.” a fourth shared the following example: he will voluntarily climb onto my lap without the treat temptation and he will come and snooze by me. he’ll sit beside the bed and look up at me and meow until i say ‘upy, upy.’ i know that’s childish talk but he understands it. so he chooses to spend his time with me. he doesn’t have to but he chooses to (female, cats). for participants and pets, proximity seeking conveyed their mutual interest, love, and affection. however, there were some instances when pets and participants sought distance and separation from one another. over time, the kitten or puppy that would follow participants underfoot, developed into an adult pet in need of quiet space as in this example: she follows me into the bathroom a lot. she’ll just come in, sit somewhere and wait for me. if i don’t let her in then, when i open the door she’s lying on the floor right outside waiting for me…sometimes we’ll be like “where is the dog” and realize that she’s come in here and is having a nap in her crate. if she does something bad...she looks terribly sheepish and…she actually will go to her crate and give herself a timeout (female, dogs). as with this example, many pets were given wide-ranging access to indoor spaces with a few even having their own room in the home. as such, it was not uncommon for pets to venture off, seeking a sunny spot by the window or a warm place to hide. one participant said referring to her cat “if i noticed she wasn’t in the room i would be like oh, why is she under the bed…then i would coax her out and let her know it was okay to come out.” another said: she’s under the bed, that’s her go-to place. it’s weird with my mom, she’s not like this at all, she comes right out when my mom is here…but anybody else she’s gone, you never see her. a lot of people joke, “she’s just a figment of your imagination” (laughing) but i have pictures to prove it so she does exist…she and i are really interconnected. she knows exactly how i’m feeling and…hers is a quiet kind of love (female, cats). some pets were well-disposed to being picked up and held by people. others resisted such attempts at being embraced, especially among pets who had a history of abuse. one participant said “she doesn’t like being picked up but she does like to cuddle but it’s sort of on her own terms.” echoing this point, a second participant remarked: you have to be really patient; you can’t push yourself on a stray. you have to gain their trust and allow them to make the rules about how intimate you’re going to be. at first all you could do is scratch under her chin and then go to her cheek and then a little more. now, she still doesn’t like me picking her up. i can stroke her or rub her belly and she sleeps with me now but it took a long time for her to build that trust up (female, cats). similarly, dogs were not uniformly accepting of being touched and cuddled with one participant remarking “she’s not a lap dog; she doesn’t come over and lick and wag but she does want to be near us most of the time unless she’s busy sleeping somewhere.” another said: she’s not like an over-the-top cuddly dog like some dogs are. i think it’s part of [her breed] so i often have to force her to cuddle. i mean she is very affectionate, she’s just not overly clingy. some dogs like to be on you all the time and she’s not really like that. she likes to have a little cuddle and then she likes a bit of space (female, dogs). furthermore, there were times when participants found it difficult to reciprocate when their pets were initiating play or expressing affection towards them. a lack of energy or a need for space left participants wanting to be alone, even avoiding their pets: i’m having a hard time connecting with loki (cat) who i know that i pushed away a lot of the time. i just didn’t want to be touched but she would either sit on the edge of the bed or she’d come up and lie next to me. i specifically remember when i was going through chemo and lying in bed and having the energy worker there and she would come in …i was frustrated and took it out on them. i wouldn’t allow even hazel (dog)…it’s like “don’t go near mummy right now, she’s not in a good space” (female, cats and dogs). through their unspoken connection, pets and participants learned to navigate when it was best to disengage, and when closeness and intimacy were needed. secondly, human-pet communication was often unspoken, yet explicit in that pets tended to display consistent and recognizable behaviours. even the most stoic of pets could not conceal their joy at being reunited with their human companions after a brief separation. cats would rub up against participants’ legs, curling their tails and rolling onto their backs. fish would swim around vigorously, producing voluminous bubbles. dogs, in particular, were known for their effusive greetings. one participant commented “those cold wet black noses, licks, kisses, and wagging tails…you come in the door and you’d think i’d been gone for days.” another said: just coming home and having that unconditional love. i have so many names for her, happy feet, because she does her little dance with her bum wiggling all over the place. just acknowledging coming home and having this creature love you and happy that you’ve made it home. and i’m equally happy that i did make it home (male, dogs). when communicating their displeasure, pets made no bones about expressing their feelings. one participant said that his dog knocks over the garbage can when he comes home late, saying “she’s basically telling me this is not acceptable.” another said that her cat once scattered the contents of his litter box because “it was offensive to his dignity.” a third said “he’s a majorly affectionate cat but he definitely has a problem with me being gone for any length of time, so going to a hospital was agonizing because i knew what it was going to be like for him.” participants often described their pets as being attentive to their words and gestures. one participant said “just the word intuitive, she (dog) can pick up on moods.” another commented “she (dog) can figure out what’s going on, or interpret your facial expressions to see if she’s doing the right thing.” a third participant described her fish by saying “they do what you’re doing. if you’re sitting there looking ahead they’ll face the same way but when i talk to him, he turns around and looks at me.” with orchestra-like precision, pets reacted to the slightest change in participants’ inflection and intonation by tilting their heads or raising their ears. rarely did participants need to utter a word before pets knew that something was wrong: when i would come home from the treatments, i had a lot of nausea and vomiting. i was having radiation every day and chemo every week and surgeries during that time. it was a very intense period because of the treatments and i always feel like she was sort of virtually and metaphorically holding my hand. she became much more cuddly and wanting to be attached to me, to help me, and to just be there. i don’t know how i would have gotten through that without her. she’s this little stoic presence (female, dogs). it seems like since i’ve been diagnosed, he’s closer to me. he’s always sitting on my knee or leaning against me or sleeping next to me…yeah, maybe he’s got a sixth sense, he knows something is going on, i don’t know, but he’ll just sit there and stare at me. he can do that for an hour, just look at me…if they could only talk (male, dogs). similarly, one participant saw a remarkable shift in her cat’s behaviour after experiencing a death in the family. this cat went from biting her ankles and peeing on her clothes to faithfully sleeping by her side by the time she was diagnosed with cancer. two others commented: there were times when i don’t know if there was food poisoning but i would get so sick. i was literally laying on the floor vomiting and thinking i should go to the hospital. and she’s laying beside me the whole time. she just would not leave my side and my neighbours were aware of my health challenges. if they hear ginger barking excessively, they’ll always come over…and the one time when i was sick on the floor, she barked excessively and it alerted a neighbour who found me and kind of helped me…and it was all because of ginger. she basically saved my life (male, dogs). there was one time the summer before and i had just started recovering. i had taken the dogs down to the beach for their run…but as i transitioned onto soft sand, i lost balance…i went down. i hit my head on a log and all three dogs came and laid beside me. somebody yelled for help and…those dogs never left my side until i was vertical again and everybody was just like “wow you have such great trained dogs.” it’s just they know when you’re sick. they know when you’re not well (female, cats and dogs). in homes with multiple pets, one pet would often assume the role of the participant’s protector. one participant said “when i finally got out of the hospital, zoe (dog) became little miss bossy pants, nobody could go near me and with every noise, she was barking.” participants’ belief that pets had an intuitive or sixth sense was further reinforced when they observed their pets carefully avoiding certain areas of their body when they were recovering from surgery: holly seemed to know when i was hurting and in pain after the surgeries and her comforting presence was so welcome and had me soon feeling better. if i was lying in bed, she would carefully lay herself beside me never once stepping on my chest. after the mastectomy i was in a lot of pain. her quiet and calm presence were a blessing to me. it was especially nice when she would lie next to me under the covers. her little body pressing against mine was pure heaven. holly was such a sweet kitty (female, cats). rocky was so good he never left me pretty well, like he slept with me the whole time. he was right underneath my chin and he learned really quickly not to walk on my stomach and little penny slept with me for the first time too during that surgery and for a stray, that’s a big, big thing. it takes a long time for them to bond with a human (female, cats). in addition, participants described how their pets would zero in on any changes in their body’s appearance or odour. one participant said that her dog would chase her around, determined to lick one of her toes that had gotten infected. as the infection cleared up, her dog’s licking declined, providing a “good barometer” of its healing. a participant with a history of prostate cancer said that his cat would always make a “beeline” to him, jumping on his lap. he went on to say “he knows that something is up, so that’s his way of helping me through the process.” lastly, human-pet communication seemed to rely upon a subtle interplay between decoding and responding to each other’s facial expressions and body language. without saying a word, a tentative gaze from participants signalled to their pet that it was time to pull out the favourite blanket or grooming brush. the prickly feeling of their dog’s tongue licking away at their hands or feet beckoned vigorous head scratches and belly rubs. the rich sounds of their cats purring reverberated through their body producing a “calming sensation” and a “sense of serenity.” the following examples highlight the reciprocal and ineffable qualities of interacting with a pet: there’s sort of this unspoken connection. sometimes i try and talk to her when she’s meowing and see how she’ll react. and if i tap the couch or the bed, or if i make a sound like tick, tick, tick, there’s sort of like a little communication. there’s a few things that she’ll do regularly so she’s not necessarily trained like a dog but there are a couple of things that feel like our language that’s developed (female, cats). it’s neat to share that with an animal other than a human being. it’s like having this connection with something different, like she can’t talk to me. it’s all very little nuances of how you are doing. it’s eye contact or how she’s holding her body or how her ears are…i can tell if there’s something going on in a person’s eyes or with their body language and you pick up on those things having a dog (female, cats and dogs). as in the second example, it was difficult for participants to put into words the precise meaning of their pets’ gestures, for example, how participants knew that an upturned ear meant doubt in one situation and curiosity in another. and yet, participants came to develop an intimate knowledge of their pets’ needs and preferences by attending to the nuances of their behaviours: i’m really attentive to his cries. i have a pretty good idea as to when he wants to go out and when he wants to be fed. i can’t tell you a detailed picture of what it is, but it’s something i sense. somehow i just feel like he’s in a hurry to go out and that view is reinforced when i bring him out because usually he goes and hides but he comes straight to the door so i know that it’s a different need other than feeding (male, cats). i find it so interesting that she’s so complicated and all of the times she’s trying to communicate in very subtle ways…the communication becomes much more ingrained and i see the ways that she’s asking for things. sometimes i’ll go and pick her up from my parents and they don’t seem to have that ability to know what she needs. i’ll get there and i’ll be able to tell right away she needed to go and do a poop…they don’t have the level of relationship, that intuitive sense that you develop over time (female, dogs). another remarked “it’s a very profound, very silent kind of love; they never come out and say ‘i love you like a human being does but their actions speak volumes.” . . . it mattered that they were there when participants needed a companion who would just listen without giving advice; when they wished to go for a walk in silence; when they couldn’t sleep; when their work-life ceased to provide structure for the day; when they were anxious and alone, it mattered that their pets were there. this theme addresses how participants experienced their pets’ presence in the context of their illness, by considering three facets of human-pet communication: upholding the silence, filling the silence, and enriching the silence. firstly, pets were effective at upholding the silence, lifting the burden of having to talk. by contrast, some interpersonal relationships were saddled with conditions and expectations for how people should act. at times, people’s well-intentioned efforts were overlaid by an almost palpable sense of discomfort, heightened by the feeling of not knowing the right thing to say. with pets, participants felt relieved of any obligation to talk: i found that when i was feeling very ill, it’s hard to talk to people. my wife is always saying “come on think positive.” you can only take so much of that. i’m the one that’s sick. i’m recovering but i still have some issues to deal with and sometimes it’s easier to be with a dog than to be with family members or friends that are very concerned about your health and “what’s going on? how are you doing?” sometimes you get tired of it, so i find that the dog is a great companion because she just wants to go out (male, dogs). my family is very supportive but they’re not here. duke’s (cat) here and quite frankly duke is the kind of comfort you want when you’re really sick because he’s not persistent. he’s not always asking how you’re feeling. he’s just there. he’s warm and he’s purry and it makes a big difference. he gives you a reason to go on. he seems to know when you’re not feeling well…he has a big advantage over a person in some ways. i can put his food out and go back to bed if i’m not well and that’s okay with him (female, cats). with pets, silence was a permissible and acceptable way of responding to illness. one participant said of her cat “he doesn’t give judgement; he doesn’t give advice (laughing) unless you count the wagging of his tail.” by allowing silence, pets left an impression that words were unnecessary and, perhaps even, a hindrance to intimacy and connection. the energy required to engage with another person led some participants to retreat from these kinds of interactions: a year and a half ago i could barely leave the house, i had so much anxiety. i would spend a lot of time on my own but she was a comfort and was there for me during that time when i didn’t want to see people and wasn’t relating to a lot of people or didn’t have the energy. she was company so i actually didn’t feel really alone (female, cats). another notable instance of pets upholding the silence was in the experience of walking with a dog. participants derived comfort from the rhythm and repetition of their shoes hitting the sidewalk as they moved in unison with their dogs. one participant referred to walks as his “meditation” and “quiet time,” explaining “she (dog) just walks alongside and every so often looks up.” a second participant said “[it’s] the most relaxing thing when you’re away from cancer and you can just sort of be one with nature and the dogs.” another said: i’ve changed a lot as a human being. i’m a lot more compassionate, wanting to help people. even though she’s four legged and can’t talk to me, i know she’s part of it. i just have to mention that word (w-a-l-k) and she’ll be right over here saying “when are we going”…she’s the one who gets me out for walks because she enjoys it and i enjoy her company. when i walk down there in the woods it’s like a gentle massage in the back of my mind being with her and talking to her. we’d sure be lost without her (male, dogs). the effects of cancer treatment affected participants’ regular walking routines with their dogs. for instance, one participant said “when i got home with the walker i could go about three houses, and within about two months i could walk a mile.” for others, daily walks increased in frequency, especially, for those who were retired or on leave from work. one participant said: at the beginning of each cycle, like every three weeks i had to go in for treatment, i had to take prednisone, and it just makes you manic. it was like i couldn’t sleep for probably two or three days so i would find it was really good to have a dog because i would take her, we would go for walks at least three times a day for like an hour each time so it was really good for me to have a companion and she’s a very good listener (male, dogs). not all dogs were equally enthusiastic about walking. some required an incentive such as a treat or car ride while others rushed to the door with the mere mention of the word w-a-l-k. one participant said “i just have to look at her and say let’s go and it’s brought peace to me.” secondly, pets were adept at filling the silence, acting as a “conduit” for communication. one participant said that his dog “helps to ease communication because she’s just there and everybody wants to scratch her and talk to her.” there was an ease in being with a pet such that participants were often unaware of themselves talking to their pets. a participant with a cat said “i do probably talk to her a lot more than i think but when you’re alone you don’t always know that you’re doing it.” another with fish said “i call him names like love and precious, sort of silly i guess, if you were listening you might think i was a little crazy.” two others said: if we’re out walking i’ll say “which way shall we go, let’s go over here,” just like talking to a person really. or if it’s getting close to her meal time, the tickedy, tickedy following everybody around will increase and she’ll become sort of more in your face and finally somebody will say “oh rosie have you been fed?” and when the kids come home, she’s always the first person they talk to, “oh rosie the dosie how are you” (female, dogs). having this lingering death at your door, the dog helped a lot…you can always talk about the dog, you can always talk to the dog and our family, we would all laugh at the things that she would do and especially when you have young adult aged children, there’s not a lot of communication going on even when someone is seriously ill and the dog is just something there and “aw sadie did this and sadie did that” and everybody is always interested, not “oh gee i felt really sick today.” no one wants to hear that (male, dogs). to understand human-pet communication, take the metaphor of walking along the beach. everyday routines with pets created a secure foundation akin to standing on packed sand. the waves lapping against the shore mirrored the ebb and flow of their conversations with pets. what cancer did was make the participants more cognizant of where they placed their feet on the sand. to illustrate, participants recalled talking to their pets during cancer treatment: one of the hardest times [was] in the morning when i was having treatment. she (dog) would come in and jump up on the bed. and just being there as a presence, i’d scratch her around her neck and she’d like that. and she’d just lay there sometimes for an hour. she was very calming and not being demanding, just being there because sometimes i’d be up in the middle of the night just unable to sleep and restless and everyone else would be asleep and she didn’t mind if you came over and talked to her…but sometimes her presence is, even if it’s a quiet presence, is better than loneliness (male, dogs). with rudy, most of the things i said when nobody was around were directed to her. she was the one that was around every day that i cried. i was in such rough shape physically that i couldn’t leave the house. i could barely walk around my apartment for months and months after treatment…rudy was that consistent piece (female, cats and dogs). not only did pets fill the silence by prompting conversation, they also elicited particular vocal cues from people. to illustrate, the following statements were made by a participant at different points during an interview: “stella, are you having a nap sweetie?” “hey, sweetheart, been my little belly.” “stell- what is it sweetheart, you okay, would you like to contribute something sweetheart? “stella, you’re such a sneak, yes you are, yes.” during another interview, in response to her cat making an aggressive motion, another participant said “oh rock-, whoa, whoa, whoa, hey cut it out.” a second warning came minutes later: “hey no claws, you can cuddle but no claws, good boy.” a third warning ended with “rocky, you’re so beautiful, you’re so pretty, you’re so gorgeous, look at this belly, no bitey, bitey, that’s not very nice.” such examples revealed participants’ affection toward their pets through their use of repetition, nicknames (e.g. stell-), and elongated words (e.g. bitey). two participants reflected upon this tendency to modify their speech when addressing their pets: i’m really conscious about sounds…maybe luna can’t understand the words i’m saying but i feel like she can probably understand the kind of intonation you’re using to talk to her. so i feel like i don’t want to, even if it’s joking around, use words and sounds that she can take negatively and i guess maybe that comes from some of the cancer stuff too because they say to stay positive and stay with good vibes (female, cats). ginger is very much a lap dog. she just wants to be loved. but she always knows when i’m angry. i tend to vent and slam things. when i see her cower and run away, it means i’m out of control and my dog is afraid of me. i have to tone it down which helps me to center myself, so i can comfort her and let her know that i’m sorry and it’s going to be okay. so i really do watch my tone, mannerisms and behaviours. if i’m in an emotional state that i can’t seem to control, i’ll just go for a walk and calm down (male, dogs). thirdly, pets were effective at enriching the silence and fostering a sense of solitude. however, this silence was not devoid of sound, and this solitude was not tantamount to loneliness. pets stirred participants’ sensory capacities through their sights, sounds, and smells. the discernible beauty of pets was not lost on participants many of whom found themselves captivated by their dogs’ expressive eyes and flowing fur, their cats’ agility in navigating a tall scratching post, or their fish’s ability to blend into their surroundings. a participant with a dog said “she’s so pretty and her ears are so soft, we just really like admiring her and playing with her.” participants felt soothed watching their pets sleeping or sitting still. with the rise and fall of their pets’ ribcage, participants felt their own breathing slowing down. two participants commented: it’s a little bit like when you see your kids sleeping, you just get this peaceful feeling that everything is okay in one compartment of your life…you tuck your kids into bed and they actually go to sleep and it’s like “oh perfect (sighs), they’re healthy and peaceful and comfortable” and [it’s] just very reassuring. and so with the dog it’s a little bit like that. she’s clearly not suffering if she can go have a nice peaceful little nap (female, dogs). if she’s (cat) cuddled up with me…i’ll focus more on our connection rather than letting my head go off into “why is my back sore? or what’s that little headache? is that rash skin cancer?” so there’s just kind of a peaceful feeling that she brings over me so i don’t have as many of those thoughts. i guess i don’t feel alone when she’s with me. there’s less of a feeling of anything bad coming to me even though that maybe isn’t rational. i just have more of a sense that things will be okay when she’s with me (female, cats). along with their visual appeal, pets made their presence known through their expressive vocalizations. the pulsating hum of their cats’ purr and the pitter-patter of their dogs’ feet provided a soothing backdrop to their daily life. a participant with a cat said “her purring, if she’s on my lap or on my chest, there’s such a nice sound and vibration that goes through me and helps calm me down.” two others spoke about the meaning of their dog’s company: it’s been nice having the company in the house. i think any dog owner finds that if your dog’s not there in the house all of a sudden, the house feels really empty, you’re listening for the tick, tick, tick of the feet on the ground and so it magnifies it a little bit just that i’m not working, so i’m around more. she’s been a very good dog. once in a while if i’ve been kind of blue she’s come up to put her nose on my knee (female, dogs). there is someone when you come home. if you come home to an empty apartment, it’s cold and it’s quiet and it’s boring. sometimes i think boredom is the worst thing that you can have and it really makes you seem like your life is not worthwhile at all. so just the company is a big thing anytime (male, dogs). as for smells, some pets were affectionately described as being “stinky” while others were prized for their remarkable cleanliness. one participant referred to his dog, saying “her paws are completely wiped, it’s like the dirt just sheds off her.” aside from the odour of kitty litter and the occasional discovery of pee and poop in the house, the smell of their pets appeared to be a familiar and comforting scent. pets groomed themselves, licking their paws and rubbing their bodies on items of clothing and furniture. one participant remarked “you can probably see cat hair everywhere in this house but that’s part of living with a cat.” a second said of her dog, “she’ll flop in one direction and then she’ll get up and flop in the other direction on the sofa and it’s like she’s trying to smell up the whole thing evenly.” another said referring to her dog “she had her own couch for a while but it’s been given away because it had too many hairs on it.” for participants, the confluence of these sights, sounds, and smells gave rise to a feeling that their home was abuzz with life and activity, and that all of this could recede into silence when they needed quiet and stillness. for participants, it mattered that their pets were there: she went through my entire diagnosis. she was there and that was all that really mattered like it didn’t matter if nobody else could take me to an appointment. well, it did matter but having her and knowing that she was around and that i could come home to her and it was consistent—that made it okay (female, cats and dogs). their presence in my life made me heal faster and in a much more profound way…it would have been a really lonely journey without them. i’m not sure if i would have had the strength to do it on my own. i still have cancer, but i’ve achieved a level of healing that i don’t think i would have done without their help, their presence, their love...i wake up and they’re both sleeping on me and i’m nice and warm under my blanket and i just revel in that. it’s a small thing, but it’s quiet and serene and relaxing (female, cats). . . . it’s like each living thing has meaning participants tended to use terms such as creature, being, living thing, and living being to describe their pets. the impact of these so-called living things and beings did not go unnoticed by participants. through their actions, pets embodied particular qualities or ways of being in the world that participants aspired to emulate. pets exemplified the importance of demonstrating care and compassion to others, and to oneself. this theme addresses these ways of being in the world by examining the role of pets in helping participants become more in-tune with the experiences of others, as well as, their own. firstly, it was clear that no two pets are alike. some pets elicited awe and admiration while others inspired envy. for example, one participant said “they have such a fantastic frickin’ life, they get fed well, have a warm place; they have cuddles and if only people could have lives like that.” similarly, cats and dogs were described by some participants as having notable differences. one participant said her cat “was very different, the personalities and with regards to independence; the cat can stay at home for three or four days at a time with a bowl of food and water; you can’t do that with a dog.” another remarked “cats are quite happy to be by themselves, dogs are not.” two others alluded to these differences, saying: people say “are you a cat person or a dog person?” to me, cats are just like things that will be there when they want to be there. they have such a different personality. some cats are different. i think dogs are just more companions. my wife is allergic to cats but i couldn’t really see us owning cats. i find a dog just seems to be more enthusiastic about doing things…you’ve got to walk them and everything but for me it’s part of the enjoyment of the dog. it’s work that i don’t mind (male, dogs). i love cats but all cats are autistic and they don’t have the ability to show emotion the way a dog does. these guys (dogs) when i was diagnosed, and especially when i was in the hospital, it was like they knew right away something was wrong, they picked up on it right away… the cat really couldn’t care less (laughing) (female, cats and dogs). the suggestion that cats are less in-tune with people compared to dogs did not hold true for all participants. one participant spoke about her relationship with her cats, explaining “it’s a mutual thing; these two needed a home and somebody to love and care for them, and i definitely needed the love and care that i always seem to get from cats.” another participant commented: loki (cat) is very comforting. hazel is (dog) more about the action and fun. hazel is not as open to it. if i’m balling my eyes out and i grab hold she’s kind of like “yeah i’m okay with that” whereas with loki she’d be all over it. she’d be like “okay, what can i do to help you?” she’d lick my tears you know it was a different relationship. the idea of being vulnerable is difficult in this society. what meant a lot to me was being able to do that with these guys and not feel like i was being judged (female, cats and dogs). furthermore, some participants described their dogs as being quite discerning about the people and animals with whom they interacted. one participant said “stella (dog) doesn’t bond with everybody; there’s just certain people that she’s more drawn to than others.” interestingly, another striking example of pets being in-tune concerned neither cats nor dogs but rather fish: i knew something was wrong but i didn’t know what and that was about the time my fish started acting funny… and here this tumor kept growing in me and it was weird. it was like he was so in tune with me and the same thing kind of happened to him. he had a great big growth around his eye and before i even knew what was going on with me, it was like “oh my fish has this tumor” and then i was diagnosed. so we were right in sync with each other…when i had my surgery, his tumor went away too (female, fish). although participants were careful to avoid calling pets, people or human beings, it was seldom that they talked about pets without making reference to human attributes or interpersonal dynamics. one participant said “i don’t want to humanize him (cat) but i see him very playful, like a child.” a second participant said “i recognize that he’s (cat) an animal and has his own dignity and space.” a third remarked “to have this other—i won’t say human being—but this other living person (dog) helping us and she really has been good to everybody.” in describing the differences between pets and people, participants discussed the importance of emotions: i’m pretty sure he likes me and that makes life worth living when something maybe loves you. it’s hard because cats are cats. they’re not people and yet we use people words to describe their feelings. that’s why i say like rather than love but i think in his own cat- way he does love me but it’s not the same as a people-love (female, cats). another participant went further to suggest that not only do pets have distinctive qualities but, in fact, they tend to elicit these very same qualities from people: most people like to think of animals as being a lesser creature. i don’t think that at all. i think actually human beings based on our behaviour are far less on the scale of goodness and i think having a relationship with them makes human beings—it brings out, in some people abuse, but with most people it actually elevates them as a human being. it makes them more compassionate, understanding, and caring (female, cats). in the case of interpersonal dynamics, pets were considered to be family members, children, siblings, and friends. along with having distinct personality traits, pets seemed to develop unique relationships with each member of the household, being standoffish with some and affectionate with others. the experiences of a participant with fish suggest that pets tended to display human-like attributes, as well as, those characteristic of other kinds of pets: i’d always liked the betta fish because they’re very beautiful with long tails and fins and colourful. i’d got one after a break-up and it was nice to have something living in the house. they’re very responsive and take to one person. if you’ve left the room for even five minutes and come back and look at him, he just gets so excited. he will start swimming and it’s like a dog if you think of a puppy and how they get so excited and knock everything over with their tail…they can’t live together because they fight and have problems and i can kind of relate to that. i’m by myself and kinda like it that way but it is quite lonely and the fish has been a good companion for me (female, fish). apart from this example, conflicts between pets living in the same household, tended to be spontaneous and short-lived, akin to the kind of jealousy and rivalry observed among human siblings. without warning pets would erupt into play and then just as suddenly begin fighting. some pets would tease their sibling by growling or pawing at them while others were often found cuddling and sleeping together. one participant shared a photo of her cats, explaining “oh that’s them curled up together…this is what they used to do all the time and she’d just basically curl up on top of him and almost disappear.” a second participant recalled her family’s experience with getting their dog, ellie, after which they decided to adopt zoe (dog) as a companion for ellie: i said to my daughter “okay we’re just going to look” and of course came home with a puppy. we had her for a year and i was still working full-time and my daughter was at school and i thought in all fairness, she’s left alone, it would be really nice if she had a companion so the following summer, we went online again and saw zoe. zoe had been beaten to a pulp and forcibly removed from a home…we went out there and i took ellie and they seemed to get along, so i ended up taking zoe home (female, cats and dogs). this participant went on to describe how zoe then responded to the addition of their cat, oscar: my daughter was working at [the mall] and hears this “mew” and finds oscar in a dumpster…so we took him home and…i spent time introducing them and zoe just realized it was a baby and started walking it all over and tucked it between her legs…and from that point on, oscar became zoe’s pup and she raised it (female, cats and dogs). the examples above demonstrate the meaning participants derived from watching their pets receiving and embracing another animal. in a similar vein, participants expressed the importance of socializing their pets such as a participant who said “before she (dog) was a year old, i introduced her to ducks and all the animals around and i was like these are your friends.” socialization was seen as a necessary measure to ensure the safety of both pets and others around them, and to enact specific values that participants held dear. for example, one participant recalled the time when she and her partner had kept a stray dog overnight, telling her own dog “i’m really proud of you for allowing another animal in our home.” aside from these interactions between pets and other animals, participants spoke about occasions when their pets showed compassion towards people. such instances evoked similar feelings of pride and gratitude from participants towards their pets. one participant described the impact of having pets, saying “it’s teaching me a bit more about compassion and to read the nuances of people.” a second participant recounted how his dog reacted to a close friend who was gravely ill with cancer, pointing to a blurry photo of his dog running into his friend’s house: the door was open. i couldn’t hold her (dog). she ran away from me and ran right into him. he was just sitting there and she went right to him. unfortunately, that’s the only picture i got because it all moved but she just ran right to him. you wonder how dogs treat people. she knew he was sick and stuff. she ran right to him and put her head there (on his friend’s lap) and wouldn’t move. and that says a thousand words (male, dogs). a third participant described how his dog would readily offer comfort to people, even strangers: one day we were walking by and there was a woman in a blue hospital gown and a fellow with his arm was around her, obviously in a lot of distress. i have an extendable leash and all of a sudden jackson wasn’t following me. he was sitting up on the bench next to them about feet back. i came back and said “come on, jackson, get down” and i saw the woman. she had her hand on him and was patting him and she said “no, it’s okay”…he changed their whole demeanour from being sad, unhappy…and totally dissolved the problem…yeah he’s done his fair share of healings (male, dogs). such encounters tended to be more common among dogs who were taken out for daily walks. nevertheless, even when pets were not physically present, participants found opportunities to connect with other people through their shared affinity for pets such as the example below: he’s a good conversation starter. “oh yes i have a cat, do you have a cat, what kind of cat?” when i go to the cancer clinic, there’s a wait between dropping off my prescription and picking it up, so sometimes there’s people waiting for rides. last month there was this older lady and we got to talking about our cats and she told me a lot about her life and it was nice…she obviously wanted to talk to somebody and it made my time go quicker so we talked about duke-the-cat and then talked about her cat (female, cats). secondly, having a pet reinforced the value of treating oneself with care and compassion. one participant said “it’s like each living thing has meaning and whether it’s to teach us a lesson that’s not so nice or to be there as comfort and guidance.” another remarked “i find i get quite emotional sometimes and it’s not typically like me whether it’s reminding me of the treatment, and the dog can almost absorb excess feelings.” the effects of cancer were like powerful winds that unearth the roots of a tree, leaving the tree standing but the roots exposed. with their roots laid bare, participants found themselves learning and re-learning to care for themselves. one participant said “i’ve been doing other kinds of supportive care since my chemo and radiation…to help heal myself and my body.” another commented: i continually work on skills like lowering my anxiety. i do a lot of meditation and yoga. i did a yoga teacher training course and that was like exercise, spirituality, creativity, community building...there’s so much that is being studied now with the mind and meditation and how that changes your cells and everything and tumors…i’ve changed my diet completely…so a big part of it is cooking and getting my groceries and, so putting it in practice. i started tai chi and qi gong, so those are both spiritual and exercise. i did an art therapy class i really enjoyed…so that’s creativity and spirituality (female, cats). the comment above highlights the importance of physical activity, creativity, and spirituality. other participants referred to these three aspects while also emphasizing how their pets help them stay active, creative, and spiritual. to illustrate, one participant said “they make me much more in-tune with myself.” with regards to physical activity, pets encouraged play and exercise. calling herself “the girl with the little white dog,” one participant spoke about the meaning of daily walks with her dog: i look and see how she’s being responded to and how she responds to things and it’s like i really don’t have to take all of this stuff so seriously. it’s really not the big deal i’m making it out to be. it allows me to switch gears in that moment (female, cats and dogs). another participant shared how walking helped her to understand her own and her dog’s needs: when she (dog) was younger i would spend hours walking her around because i’d be convinced that she needed to do a poop but then she wouldn’t do one. because she’s a girl, it takes her forever to go to the toilet. she needs to find the perfect spot...so i would find that frustrating sometimes because there was that conflict between her needing her slow time and me being in a rush so that was a point of frustration, learning how to navigate those two conflicting places. now, it’s like the more i’m in tune with myself, the more i’m in tune with her. i’m able to be in that intuitive part of myself (female, dogs). in the case of cats, one participant described her experience of doing yoga and meditation: if i try to do yoga, forget it. they’re climbing all over me. it ends up being more funny than anything because rocky crawls right on top of me…penny just stares at me like “what are you doing?”…but meditation is much easier...rocky will curl up underneath my throat or sit on my chest or legs and penny will usually curl up on my legs. i’ll sit there with or without music and just relax and breathe and control my thoughts and he’ll be right there on top of me. he’s not a distraction the way he is with yoga. his breathing becomes calmer with me and almost hits a relaxed state as well. it’s a luxury that most people don’t have time for or don’t give themselves the time (female, cats). the link between pets and physical activity was not surprising. somewhat unexpectedly was the way in which pets provided an outlet for creativity. one participant described creating a video, explaining that her dog, stella, is the narrator of the film and “it starts with stella on the beach and she’s having this philosophical dilemma [about] her relationship to the beach and the waves and nature; it’s like her narrating the story of our family.” she went on to say “it was a creative practice of me being able to actualize my profound love for her, and also have some play around that.” other participants described making portraits or photo collages of their pets: i started drawing rocky when i couldn’t get out of bed, just as drawing exercises and something creative to start doing again, getting the creative mind going. i had wanted to start writing children’s stories about rocky, the adventures of rocky, so i started taking pictures of him in different sleeping positions because that’s the basis of the book. all of his adventures are actually in his head while he’s sleeping (female, cats). along with creativity, pets helped participants become more in-tune with different aspects of themselves, from the emotional to the spiritual. participants described losing a sense of structure and routine following cancer, such as a participant who spoke of getting through the “bumps and bits and pieces” with her pets. another participant said that when her dog first came into her life, she was “going through some personal struggles and having some issues around drinking.” she remarked that, after going through cancer with her dog at her side, it feels like the “narrative has come full circle.” similarly, a third participant said: when i allowed myself to get swelled by everything, work and an abusive relationship and alcohol, i just sort of let go of all of that. the only positive glimpse i ever had of real love and connection was with animals…they were the beings that really i connected to completely and wholly and felt any kind of real spiritual love and oneness with. and when i got sick, they helped me to really start healing and i re-found that poor, neglected part of me that just needed to be cared for with diet and exercise, reconnecting with the more spiritual side of myself and just caring about myself again (female, cats). another notable example pertaining to spirituality came from a participant who described taking part in a spiritual practice known as the blessing of the animals. she explained: it coincides with the feast of st. francis of assisi. it’s usually held late september or the first week of october. there’s a special service in the afternoon and people can bring their animals to church…and they are blessed by the priest…it’s amazing, there’s quite a few people who come out who wouldn’t normally go to church but they’ll bring their animals in to be blessed…there was the time when i had ellie and zoe (dogs) and two cats and a guinea pig. that was pretty memorable and keeping them all organized in the pew. and it’s amazing, they do seem to know, they all behaved (female, cats and dogs). only a handful of participants expressly used the word spirituality. more often, participants discussed the importance of their pets for their “healing process” or “healing journey.” for some participants, healing was not just a matter of recovering from illness but straddling the line between life and death. one participant suggested that his dog “could be the salvation” for him. another said of her cat, “i feel like she’s helped save my life; i said that already but i don’t know how the last year and a half would be without having her relationship.” a third participant shared how her cats have influenced what it means to heal from cancer: it’s hard to even put in words how much they’ve been part of that whole process. and not just healing from the cancer but kind of re-finding myself, giving myself back to myself. i didn’t like myself much before and i wasn’t taking very good care of myself. i was just simply going to work, coming home, drinking, going to sleep, and repeating the pattern over and over again and when i started going through the whole process of healing from the cancer, it became healing the whole, the complete self (female, cats). for this participant and others, one aspect of healing was addressing patterns in their life that prevented them from caring for themselves. a second aspect of healing involved attending to the whole, complete self, something that did not always come easily to participants. one participant stated “it’s easier to give to an animal your love and affection and dedication.” another said: i’m just really grateful to be a guardian to these guys and they’re able to be who they are with me. something i’m learning to do is to just be who i am and not be so concerned about what everybody else thinks. we have a lot to learn from animals and especially domesticated ones and the wild ones…and i honestly don’t know where i would be if it weren’t for them in my life. i would be going through so much grief and sadness and anger and frustration, and taking it out on them…they’ve honestly just taught me so many little things, a lot of patience, a lot of calm, a lot of time for play…it’s been learning a lot about letting go, receiving love, letting things in (female, cats and dogs). in the process of becoming more in-tune with their pets, participants were able to reclaim aspects of themselves which had been neglected or consumed by illness and the stresses of daily life. . reflections on the use of photo-elicitation the discussion of photos took place at different points during the interviews, with some participants sharing photos early on, and others continuing to reference photos throughout the interview. participants shared photos by swiping their finger on a screen, flipping through a stack of pictures, or turning a page in photo album or calendar. along with photos, the sharing of videos added movement and sound, helping to animate the telling and re-telling of vivid memories and anecdotes. these still images and video clips allowed me to see how participants’ relationship with their pets had evolved over time. moreover, they provided insights into important relational dynamics between pets and people, and between pet siblings. to illustrate, one participant pointed at a picture of her two cats, saying “that’s a cute shot of those two, they’re face to face.” the photos had a visual and tangible appeal, inviting participants to talk about pets who had passed on, and pets who were currently in their care. as suggested by the comments below, looking at photos helped to transport participants back to a time when their pets were young and new routines were beginning to take shape: i know i’ve got pictures of her when we first got her. we were just looking at them the other day, they disappeared. oh here we go, did i say , it’s , so that’s her when we first got her, that’s my wife and you see, she was about nine weeks. my wife saw her—we had a dog that passed away in . we had her for years. it was a border collie cross. so in , for a couple of years, we didn’t have a dog. so you sort of feel like your home is empty in a way because even though we still have two kids, it’s a lot less responsibility (male, dogs). so did you want to see any pictures? i don’t know whether these are in any particular order. i’ll try starting them off. yeah that’s when he was pretty young. he was just a puppy there. you see the size of the couch and the size of him. that’s my wife and him. he loves sitting on my wife’s knee and in the morning she has coffee and reads the paper and he’s always laying on her lap or sitting on her knee. and that’s where he is first thing in the morning and then he gravitates over to me (male, dogs). we have lots of pictures of him in these baskets. let me see if i can show you one. i sent one to [my daughter] especially now that she’s away to show what her cat is up to…a lot of these women are always showing pictures of their grandchildren, well with me i share pictures with her of dusty (male, cats). other comments seemed to suggest that pets are not only important to participants but are also a ubiquitous presence in their life: i went on a couple of cancer retreats and we were asked to bring pictures of significants, you know most people brought pictures of their kids or something or their spouses and family pictures, and i took pictures of my fish (female, fish). it’s interesting to see her change. now i know when she wants her hugs and i know when she wants her snuggles. she does this certain position and she really loves my partner, that’s him (pointing to a picture), actually you can see, he’s the guy in the middle. that’s our vision board up here and that’s me. i put a little picture of hazel next to me on here because honestly, she goes pretty much everywhere with me (female, cats and dogs). participants seemed to revel in the opportunity to talk about their pets and showcase their unique quirks and attributes. the following comments highlight the humor and playfulness exhibited by participants while telling me about their photos: that was another christmas, jackson dressed up as a reindeer. and that’s a picture of jackson and i. yeah he’ll sit there with his head right on my shoulder here and behind me. it’s like a parrot…i remember taking all those pictures of him and that’s not all of them either, i have a lot more but didn’t want to bore you with them (laughing). i think it was pictures but it just makes me feel how lucky i am that we have a dog like that and i guess everybody’s dog is their best friend and jackson is definitely mine (male, dogs). i should show you a picture if i may. [i] talked about it and you reminded me of it. “taz (talking to neighbour’s cat) it’s not of you.” how could you resist that (pointing to a photo of her cat)? he has a cat door but that doesn’t mean he wants to use the cat door, no, no, no. that means that he wants you to get up and let him in. i’ve got a beautiful one of him hiding in the garden. there he is. you see how he blends in. it’s not me, i’m not really here. no, i’m not doing rude things to your garden (female, cats). in the first comment, the participant likens his dog to a parrot, calling to mind a comical image of his dog perched on his shoulder. he jokes that he doesn’t want to bore me, knowing that i’m the one who asked to see photos of his dog. in the second comment, the participant addresses both me and a neighbour’s cat who has stopped by for a visit. she begins by remarking on her cat’s chameleon-like beauty, and then seamlessly adopts her cat’s persona by speaking in first person. such examples of playful banter were common across the interviews, attesting to the joyful and endearing nature of the human-pet relationship: i’ll show you a picture of her. she’s just so funny and she just barks her head off. she’ll put her mouth right up to the [hose] nozzle and gets sprayed right in the head, she just goes crazy. it’s quite funny. she just chases it all over like a lunatic (male, dogs). but yeah he’s a ridiculous cat (laughing), he’s sort of like, the first ones, if you just keep going (pointing to pictures) you’ll see. okay, so that’s just him sleeping. he’s so funny like even when he’s sleeping, he’s comical…there’s a good picture, he loves getting pictures taken of him (laughing), he’s funny, oh my god (female, cats). she (dog) loved running up and down next to the waves, barking at the waves, sort of like her little passion every day. so i made a video of her on the beach and sort of narrated this little film (laughing). my parents are very sweet. they still watch it apparently and text me and say, we were just watching the movie of stella (female, dogs). in the examples above, photos evoked smiles and laughter while, in other instances, they prompted silence and tears. participants seemed to appreciate each and every one of their pets for the meaning that he or she had brought to their lives. discussions about photos provided a window into their intimate experiences and their individual journeys toward healing and recovery. for example, only a few participants showed pictures of themselves during cancer treatment, remarking that some moments were just too painful and raw to remember. among participants who shared photos of their cancer experience, some of their comments were: i remember i had this picture of myself holding her as a puppy and my hair is very, very short and i still look kind of not myself and i was just so, so happy. like i was just so thrilled but terrified to make the decision to bring her (dog) into my home, going back with loki, the cancer experience was horrid. like none of it was fun, none of it was good, none that i can remember anyway (female, cats and dogs). i mean i look at the pictures and we can remember them and stuff. there’s lots of pictures all over of her. i do remember when i got out of the hospital i was sitting right there and i do remember she wouldn’t leave, like “where have you been all this time, what’s wrong?” i would say you know besides the person with cancer, it’s what the dog does for the family too (male, dogs). that’s when i lost my hair, “hey sadie” (dog). but she’s just a very gentle dog and in some ways when she was younger she used to be quite intimidated by other dogs at the park, not so much now she’s quite into rough and tumble playing with other dogs. it’s always fun taking her out because she’s excited to go out for walks (male, dog). interestingly, the third comment is from an interview that took place at a coffee shop where the participant’s dog was not present. simply looking at the photo prompted this participant to speak to sadie as if she had been there. the words of another participant powerfully summarize what these photos mean to participants, and how it feels to relive them time and time again: a friend of mine shared with me years ago, take as many photos and videos as you can because it goes by so fast and the next thing you know they’re gone and what do you have to show for it right. i came across a video that i’d taken of loki…and the two of them were in it and i was playing with her and yeah, it was nice to revisit those moments and just have them (female, cats and dogs). chapter : discussion in this chapter, i discuss the meaning of the findings in light of theoretical constructs and empirical research. i begin by reviewing the theoretical framework outlined in chapter . with reference to the eight phenomenological themes, i discuss key findings that confirm or expand our understanding of the lived experience of the human-companion animal relationship. some themes replicate previous research while others offer new insights into the importance of this relationship for people with cancer. next, i describe the implications of the study for research and practice in supportive cancer care. the chapter concludes with a discussion of the limitations of the study and directions for future research. . overview of the study the purpose of the study was to explore the lived experience of the human-companion animal relationship for people with cancer. the study is unique in psychosocial oncology as one of only a handful of investigations whose primary objective is to explore the phenomenon of pet ownership among people with cancer (larson et al., ; nitkin, ). as noted previously, more research has been aimed at evaluating the therapeutic benefits of companion animals. the present study contributes to the literature by highlighting the importance of meaning-making in the context of people’s relationships with their companion animals. in framing this discussion, i drew upon the concepts of attunement, resilience, and thriving to help explain why people’s relationships with their companion animals can be especially meaningful and rewarding in the experience of cancer. consistent with the method of the reduction, i strived to set aside these concepts as i gathered lived experience descriptions and reflected upon the essential themes which characterize the human-companion animal relationship (van manen, ). . theoretical framework revisited the model proposed by carver ( ) posits that an individual can experience some kind of growth or gain following a stressful life event such that he/she may function more effectively when confronted with similar events. this kind of growth is considered to be an example of thriving. in this study, my aim was not to assess whether people demonstrate evidence of resilience or thriving following their cancer experience. instead, my concern was with exploring meaning-making strategies that help to account for instances of resilience and thriving among people with cancer (carver, ). while some people experience distress or a loss of meaning, others are able to draw upon particular strategies to help make sense of their experiences. it is here that i focused my efforts on understanding the ways in which people engage in meaning- making in the context of their relationships with pets (berscheid & regan, ). i argued that intimate connections, although not a precondition for meaning-making, can help people find greater meaning from their experiences (yalom & josselson, ). through phenomenological reflection, i identified three super-ordinate themes that align with the following meaning-making strategies: disengagement/acceptance, distraction, and support seeking. these meaning-making strategies find support in the coping literature as examples of problem-focused, emotion-focused, and meaning-focused coping (folkman, ; folkman et al., ; waldrop et al., a; wenninger et al., ). problem-focused coping refers to a person’s attempts to change or confront a stressful situation while emotion-focused and meaning-focused coping refers to strategies used by an individual to manage negative and positive emotions, respectively (bigatti et al., ; folkman et al., ). these three types of coping, although different in their functions, tend to operate in conjunction with one another (folkman, ; folkman et al., ; waldrop et al., a; wenninger et al., ). meaning- focused coping may prompt an individual to reconsider his/her beliefs, values, or priorities in life. this type of coping is substantiated by empirical research suggesting that cancer patients experience both positive and negative emotions during periods of stress (folkman, ). meaning-focused coping encourages people to see a stressful situation as a challenge rather than a threat, and helps them persist in coping. the super-ordinate theme, (dis)connecting with the journey, reflects participants’ attempts to disengage from, as well as, accept difficult or challenging aspects of their cancer experience. research suggests that strategies involving disengagement from the cancer environment or the experience of being a patient, tend to be associated with greater distress while those characterized by acceptance are linked to lower distress and depression (alcalar, ozkan, kucucuk, aslay, & ozkan, ; kvillemo & bränström, ). in this study, disengagement/acceptance strategies were not mutually exclusive. for example, thoughts of dying were unavoidable, from the looming threat of a cancer recurrence to the trauma of surviving a near death experience. in such occasions participants felt the need to reflect upon the meaning of dying, even preparing themselves or others for this outcome while, in other occasions, thoughts of dying shifted to thoughts of living, and living more consciously. participants believed that it was important to their pets that they were alive and trying to heal and recover from cancer. in many cases, pets provided a reprieve from thoughts of dying and, for some participants, the “will to fight” and be “one of the percent that survive and thrive.” accordingly, participants were not necessarily avoiding the subject of death but instead were trying to reframe the meaning of dying (i.e. emotion-focused coping) and redirect their thoughts to caring for their pets and living more consciously (i.e. problem-focused coping). participants’ efforts to confront their mortality can be viewed as instances of problem-focused coping. this type of coping is associated with better adjustment to cancer in the short-term and lower distress overall (drageset, lindstrøm, & underlid, ). the present study makes clear that existential concerns are not limited to thoughts of one’s own death as participants were left to confront the inevitability of losing a pet. such findings echo those of similar investigations which suggest that a person’s attempts to confront existential concerns can lead to a deepening of relationships, a redefining of one’s priorities in life, and a greater sense of compassion towards others (drageset et al., ; molzahn et al., ; van der spek et al., ). the super-ordinate theme, pulling you out of yourself, reflects the ways in which participants tried to make meaning by seeking a source of distraction. also considered to be a form of emotion-focused coping (folkman et al., ; waldrop et al., a), distraction is a defining feature of play with pets, as well as, caretaking responsibilities towards pets. play and caretaking helped to shape participants’ daily routines, offering a sense of structure and direction for their everyday life. as in other investigations, participants tended to have fewer thoughts of cancer when they were able to focus their attention on a particular activity (drageset et al., ). some authors have described how people use distraction by seeking positive or neutral experiences (webb, miles, & sheeran, ). these examples of distraction differ from avoidance or emotional distancing which has been found to exacerbate stress (boehmer et al., ; yeung et al., ). while play and caretaking shared some positive elements, it would be more appropriate to characterize these strategies as a meaningful distraction rather than positive or neutral. to illustrate, some participants described themselves as being their pet’s guardian or parent which has both positive and negative aspects. moreover, while play was often accompanied by humor and laughter, there were times when play evoked anger or distress such as when pets destroyed participants’ possessions or displayed signs of aggression towards them. along with seeking distraction, participants engaged in meaning-making by seeking connection. the following quote seems appropriate here: “rarely can a response [i.e. verbal] make something better; what makes something better is connection” (the rsa, ). participants turned to their pets for support and companionship. the super-ordinate theme, speaking volumes with their actions, is concerned with the relational dimension of meaning- making. when participants were in need of support, pets would climb onto the couch or bed, cuddling or sleeping with participants. when participants wished to be left alone, pets would physically distance themselves from their human caretakers, giving them space or going into another room. through their ability to respond and adapt to participants’ needs, pets were able to convey powerful meanings through simple and subtle gestures such as pressing their chin on the participants’ knee or leaning in and making eye contact. some researchers regard these gestures as a form of emotional support that can promote strength and resilience (brooks et al., ; walsh, b). the supportive functions of pets confirm findings from previous studies regarding the relationship between social support and improved well-being (boehmer et al., ; bultz & carlson, ; cavanaugh, leonard, & scammon, ; costanzo et al., ; maller, townsend, pryor, brown, & st leger, ; marcus, b; wills & ainette, ). social support is broadly understood as the degree to which a person feels integrated in his/her community, and believes that he/she can rely upon others for help (wills & ainette, ). while there is little dispute that social support can be protective for health and well-being, not all support is created equal. social support can be measured by the number of social connections a person has (i.e. structural measure) or by the quality of support that a person actually receives. support can be categorized into different types (i.e. functional measure) including emotional, informational, instrumental (e.g. transportation, childcare), and companionship support (brooks et al., ; wills & ainette, ). as trusted confidants and leisure companions, pets provide emotional and companionship support, respectively (wills & ainette, ). based upon the participants’ accounts in this study, connection seeking rather than support seeking seems more applicable in describing meaning-making. firstly, the term connection highlights the intimate, reciprocal, and enduring nature of the human-companion animal relationship. previous studies suggest that structural measures of social support are not strongly correlated with functional measures (wills & ainette, ). consequently, a person can have a wide social network that includes primary relationships (e.g. spouse or partner, children, etc.), and be lacking in intimate connections. secondly, the use of functional measures to assess support from pets, paints a limited picture of the ways in which pets impact a person’s well-being. i would add that pets offer what can be described as validation support by affirming or validating the meanings participants derived from their experiences. validation support is especially relevant in the experience of cancer. in this study, participants remarked that cancer patients are often advised to “think positive” and “stay with good vibes,” as negative thoughts are believed to accelerate the progression of disease (slakov & leslie, ; youll & meekosha, ). however, a reliance upon positive thinking is no more helpful than using avoidance strategies if people are ignoring or denying their suffering (vianna et al., ). by validating participants’ feelings, both positive and negative, pets reinforced participants’ efforts to make meaning through acceptance and connection seeking. when viewed in the context of literature on coping and social support, these meaning- making strategies (disengagement/acceptance, distraction, and connection seeking) may not seem especially surprising or illuminating. what is of note is the lack of attention given to companion animals in research on psychosocial adjustment to cancer. pets are seldom discussed (costanzo et al., ; mccorkle et al., ) except for a brief mention in descriptions of pleasurable activities (lockwood & o’connor, ) or sources of social support (molzahn et al., ). moreover, the evidence base all but overlooks a significant form of psychological thriving that was demonstrated by most, if not all, of the participants in this study, namely, strengthened personal relationships (carver, ). participants’ relationships with pets and the deepening of these relationships through meaning-making is itself a form of thriving. many participants felt closer to their pets following cancer while others experienced a temporary loss of intimacy only to be renewed again with the same or newly acquired pet. over the span of their relationship with their pets, participants had dealt with various challenges from death and divorce to mental illness and substance use. accordingly, cancer was not the only catalyst for instances of thriving. another indicator of psychological thriving concerned participants’ knowledge of cancer. by researching information and interacting with health care professionals, participants displayed a wealth of knowledge about the types and outcomes of various cancer treatment options, in some cases, applying this same information to the care of their pets. for example, participants spoke about the importance of being physically active, avoiding certain medications or cleaning products, and choosing organic foods and supplements. a third example of thriving was participants’ orientation to life, and life beyond cancer. for participants, cancer was an ever- present threat; it could still be there; it could always come back. the residue of cancer remained, but with the touch of a cold wet nose, prickly tongues, and warm paws, participants were reminded that there were food bowls to be filled, litter boxes and fish bowls to be cleaned, and bellies to be scratched. as such, thriving did not manifest itself as a sustained or higher level of functioning (carver, ). thriving happened in the moments when participants were able to disconnect from cancer and re-connect with their pets (halm, ). in the words of participants, pets helped them switch gears, navigate conflicting places, and control their thoughts. in this way, play and caretaking carried meaning well beyond distraction and stress-relief. . key findings from the eight phenomenological themes as noted in chapter , themes are “creative shorthands” that enable us to look at cross- cutting trends and patterns (van manen, ). the eight phenomenological themes are intended to show the diversity and uniqueness of the participants’ experiences. in this section, i describe several key findings that bridge more than one of the eight themes. i give particular attention to findings that confirm, contradict, or extend results from the available literature. . . kindred play through the medium of play, pets provided a wellspring of amusement. some participants regarded their pets as being childlike in their fervor to explore their surroundings. other participants viewed play as a counterbalance to the darkness and despair of their cancer experience. importantly, pets were not simply the object of their amusement as participants were often engaged in play with their pets, hence the term kindred play. pets were especially adept at eliciting playfulness in people and other animals. at times, it was the unabashed predictability of pets that turned a mild annoyance into a source of amusement, such as pets’ insistence on chasing the vacuum or fleeing at the sight of nail clippers. in other instances, the element of spontaneity appeared to heighten participants’ enjoyment of humorous play and unpredictable play. spontaneity helped to stem the tide of negative thoughts and fears running through their minds, allowing participants a momentary release in the form of laughter. notably, research suggests that laughter promotes cardiovascular and immune health by increasing positive affect, reducing stress, and strengthening social bonds (aron, norman, aron, mckenna, & heyman, ; savage, lujan, thipparthi, & dicarlo, ; valeri, ). it is useful to clarify that play and playfulness are not one and the same. as noted in the work of csikszentmihalyi, play is thought to involve “intense focus using skills to meet goals and losing a sense of time and self” whereas playfulness is seen as a personality trait or predilection for spontaneity and fun-seeking (lockwood & o’connor, , p. ). for example, professional sports and gambling involve play but not playfulness, as the primary focus is on competition rather than amusement (lockwood & o’connor, ; sommerville, o’connor, & asher, ). playfulness has a developmental component, reaching its peak among children and young animals and declining with age (lockwood & o’connor, ). among people, playfulness is associated with greater use of adaptive coping strategies and less reliance upon avoidance strategies (magnuson & barnett, ). people who exhibit playfulness are more likely to view a stressful situation as a minor or temporary stressor (drageset et al., ; lockwood & o’connor, ; magnuson & barnett, ; waldrop et al., a; wenninger et al., ). although play seems so obvious to our sensibilities—we know it when we see it—there is a lack of consensus in the animal behaviour literature on how to define play (byosiere, espinosa, & smuts, ). some authors describe play as being intrinsically rewarding and involving behaviours that can be repeated in a flexible manner (palagi et al., ; sommerville et al., ). the seven types of play identified in this study can be classified as object play (i.e. involving toys or objects) or social play (i.e. involving humans or animals) (bradshaw, pullen, & rooney, ). play also varied in frequency and intensity depending on the pet’s age, individual preferences, and breed-specific personality traits. for example, one participant remarked that her cat is a perfect match to the clownish traits that are characteristic of his breed while another said that his cat has the qualities (e.g. sharp reflexes) of a hunter. in the case of dogs, retrievers and collies were known to enjoy chasing toys or other dogs while terriers and pugs showed a preference for mutual game play, especially when their human caretakers were involved (coren, ; howse, anderson, & walsh, ). interestingly, a preference for social play over object play, and play with people over conspecifics (i.e. animals of the same species) was also observed among some cats and fish. the results of observational studies suggest that cats are more inclined to play when they encounter prey-like (e.g. small, furry, moving rapidly, etc.) objects, and tend to engage in behaviours that are reminiscent of their predatory instincts to find, capture, and consume prey (bradshaw et al., ; hall, bradshaw, & robinson, ). in a similar vein, play seems to have been hardwired into the biology of dogs, with some authors suggesting that play was selected for during domestication to facilitate human-dog bonding (bradshaw et al., ; coren, ; sommerville et al., ). findings from the present study challenge traditional views of play as being largely predatory-driven in cats, and socially-oriented in dogs (bradshaw et al., ; howse et al., ). for example, cats not only engaged in instinctual play but also initiated rituals and games with their human caretakers. moreover, dogs were not alone in being motivated by the social rewards of interacting with people (bradshaw et al., ). fish were also described as being playful and responsive towards people, thus, providing more than just ambient stimulation. whereas participants were generally more accepting of instinctual play in cats compared to dogs, the opposite seemed to be true in the case of rough-and-tumble play (abbreviated as rtp in this section). in human-animal or animal-animal rtp, one partner tries to gain an advantage over the other through roughhousing or play-fighting (palagi et al., ). rtp relies upon improvisation, requiring partners to shift gears quickly and respond in a flexible manner (eig, ; palagi et al., ). given the competitive nature of rtp, verbal and nonverbal communication is important for negotiating play and curtailing aggression. in this study, participants used motherese when speaking to their pets, as well as, various play signals that were intended to mimic their pet’s gait, posture, facial expressions, or vocalizations (eig, ; palagi et al., ; rooney, bradshaw, & robinson, ). dogs, as evidenced by their tail wagging and barking, seemed to enjoy rtp with participants and other dogs (howse et al., ) while few cats tolerated being teased or wrestled in this manner. consistent with other investigations (bradshaw et al., ; eig, ), men were more likely than women to engage in rtp with both dogs and cats. one proposed reason for this gender difference is that rtp allows individuals to communicate their emotions indirectly, for example, teasing someone to express affection (stgeorge, goodwin, & fletcher, ). play, and rtp in particular, requires skills in problem-solving and emotional regulation as individuals must be able to respond to novel and unexpected situations (eig, ; palagi et al., ; sommerville et al., ). implicated in stress and reward pathways, play activates hormones that help people and animals cope with stress (sommerville et al., ). research suggests that children who engage in rtp with their parents experience fewer social and emotional challenges later on in life (stgeorge et al., ). therefore, rtp may be an indication of a strong and affectionate parent-child relationship, as well as, a means to develop such a relationship. human-animal rtp is also associated with enhanced bonding and affection (eig, ). for instance, dogs show a reduction in stress hormones when playing wit h people (bradshaw et al., ). in one experiment, dogs who were administered oxytocin tended to initiate play more frequently with other dogs, play for longer periods, and use more play signals compared to dogs in a control condition (romero, nagasawa, mogi, hasegawa, & kikusui, ). aside from regulating stress, play fosters resilience by encouraging creativity and resourcefulness in both people and pets (bradshaw et al., ). in the present study, play signals were not unique to pets as participants often adopted their pets’ vocalizations and body language to initiate or prolong play (bradshaw et al., ; sommerville et al., ). accordingly, people and pets do in fact speak the same language when it comes to play. the use of play signals helped participants and pets negotiate when to engage in proximity and distance seeking. while it was easier for participants to interact with pets rather than people, play seemed to be one exception. participants had recalled instances during cancer treatment when they were too exhausted to play. in another study, participants expressed concern about their cats having few opportunities for social interaction and physical activity (strickler & shull, ). of the people surveyed, percent reported playing with their cat once a day for at least min. participants, who played with their cats regularly, reported fewer behavioural problems. without assuming cause and effect (i.e. play reduces behavioural problems), play appears to be one such mechanism for building rewarding relationships between people and their pets. although the frequency and duration of play was not measured in the present study, the general takeaway was that participants valued play in their relationship with their pets, as evidenced by their efforts to play even while being bed-ridden or suffering from pain and exhaustion. for most participants, avoiding play was the exception rather than the norm. while other studies have emphasized the role of people in determining the length and frequency of play with pets (palagi et al., ), this study is unique in highlighting the role of pets in establishing the rules and parameters for play (e.g. type, intensity, degree of physical contact). in reflecting upon the title of the theme, “it’s sort of silly, but,” it is critical that we attend to the word “but.” play, in all its apparent silliness, is not a futile endeavour but rather a vibrant medium for exchanging positive affect and reinforcing social bonds between pets and people (donoff & bridgman, ). . . mattering presence being in the presence of a pet was unlike any other interaction participants had experienced. there was a felt sense that something was different. take an example involving sensory stimulation. if we blow on our fingertips, we feel a steady stream of air that can be warm or cool depending on our body temperature. the same stream of air now feels cold and tingly on our wrist, encircling the tiny hairs covering our skin. physiological explanations would tell us that these sensations are due to the type of nerve endings and sensory receptors found on different parts of our body. for us, in our lived experience, something just feels different. for participants, having a pet was a daily reminder that their very being in the world mattered to someone. this mattering presence was apparent in their pets’ touch, proximity to participants, and their facial and bodily expressions. with pets, there was no obligation to speak, and yet words came rather easily, prompting participants to talk to their pets frequently and effusively. this running commentary helped to foster a sense of accompaniment, or as one participant put it, a feeling that pets were “metaphorically holding [their] hand” (blazina, ; winnicott, ). some of the more striking examples of this mattering presence tended to involve elements of movement and repetition. to illustrate, participants described feeling a sense of peacefulness while watching the rise and fall of their pets’ ribcage with each breath. the sight of water bubbling and rippling as fish swam around their bowls helped participants to feel relaxed, lulling them into a state of restful sleep. the purring of cats had a calming effect on participants with its rich vibrations pulsating through their chest and body. daily walks allowed participants to focus on the sensation of walking and moving with their dogs. the experience of being absorbed in the repetitive sights and sounds of pets, shares an intriguing parallel with the therapeutic effects of arts-based practices. for instance, free-form colouring (i.e. colouring a blank page) requires people to structure their experience by making choices about what to draw. this type of colouring is less effective at reducing anxiety compared to colouring therapy which involves filling in ready-made geometric designs (curry & kasser, ). the use of symmetrical figures with repeating patterns is thought to disrupt negative thoughts and emotions, drawing people into an almost meditative state (curry & kasser, ; vennet & serice, ). for participants in this study, observing the repetitive movements of their pets induced a state of calm, perhaps, similar to that of colouring therapy. repetition was also an inherent part of being a caretaker to a pet. the responsibilities of feeding, grooming, and exercising their pets provided participants with a sense of structure and direction (brooks et al., ). other instances of caretaking were motivated less by a sense of responsibility but by the mutual enjoyment of participants and pets. for example, participants relished the opportunity to cuddle with their pets, deriving comfort from its intimate and tactile nature. some pets also enjoyed cuddling as evidenced by their efforts to initiate or prolong these encounters through proximity seeking, pawing, and making eye contact. in many instances, touch represented an important means of exchanging positive affect between participants and pets. considering that the human- fish relationship is less amenable to touch, alternate strategies were necessary to facilitate communication. participants and fish engaged in social mimicry by mirroring each other’s behaviour (salazar kämpf et al., ). fish would look in the same direction, following the participant’s gaze and hand movements. observed in both people and animals, social mimicry occurs spontaneously and unconsciously, and is thought to satisfy a basic need to affiliate and belong (howse et al., ; salazar kämpf et al., ). in this study, cats and dogs not only imitated participants but also adjusted their activity level (e.g. slowing down or moving faster) or body language to match their human caretakers. pets seemed to recognize when participants were feeling ill and would lean in, gently resting their body against the participants or curling up beside them. moreover, when participants were smiling or talking in an animated tone of voice (i.e. motherese), pets would reciprocate or even amplify these affective cues through specific vocalizations such as barking, purring, or growling. participants and dogs also communicated using referential gestures (e.g. pointing) which are used by an individual to draw another’s attention to a particular object or event (worsley & o’hara, ). researchers have identified referential gestures that dogs tend to use when interacting with their human caretakers (worsley & o’hara, ). taken together, the use of social mimicry, gestures, and vocalizations highlights the essence of being in an attuned relationship such as that described by participants in the theme, it’s like each living thing has meaning. an attuned relationship is one in which relationship partners are able to recognize and respond to each other’s feelings (blazina, ; lasher, ). the sense of accompaniment that participants felt in the presence of their pets was a testament to the capacity of pets to be able to tune-in and understand the experiences of people. through repeated observation, pets and participants came to learn the meaning of subtle gestures and nuanced vocalizations (worsley & o’hara, ). participants repeatedly emphasized instances during which pets seemed to know that something was wrong and adjusted their behaviour to reflect this knowing (brooks et al., ). for example, pets avoided stepping on certain areas of their body or greeted participants by gently nuzzling against them rather than jumping or pouncing on them. likewise, participants seemed to know when something was wrong with their pets, and to paraphrase one individual, part of them felt wounded as well. compared to communication in the animal kingdom, interpersonal communication permits numerous combinations of words and symbols. yet, people manage to converse with non-human animals whose communication patterns do not seem to share these generative and recursive features. for example, referential gestures are relatively rare among non-human animals, especially during inter-species communication (worsley & o’hara, ). the ability of dogs to use these gestures in their interactions with people, attests to the level of engagement that is required to accurately interpret and respond to another species’ nonverbal gestures (worsley & o’hara, ). if we were to prize interpersonal communication for its verbal intricacies, we would miss the truly boundless form of communication that characterizes the human-pet relationship. in the present study, pets often relied upon sensory (e.g. sounds, smells) cues to know when to approach participants, how close they could be, and when to disengage from them. importantly, some pets were not receptive to being touched or picked up by people. similar to examples concerning play, pets demonstrated agency in helping to shape the rules about human-pet intimacy. also relevant in the discussion of agency is the role of silence in cultivating a mattering presence. pets allowed for silence without the boredom and loneliness that looms over an empty home or hospital room. this silence did not mean the absence of communication but rather the suspension of social pressures (e.g. judgment) that can accompany interpersonal relationships (brooks et al., ). moreover, this silence was intentional and communicative as opposed to an expression of awkwardness or hostility (bartels et al., ; knutson & kristiansen, ). in interpersonal communication, silence can be met with confusion or disaffection on the part of the recipient (knutson & kristiansen, ). alternatively, silence can engender closeness between communication partners such that a shared connection is felt but remains unspoken (bartels et al., ; knutson & kristiansen, ). this “shared silence” has been described as a “gateway for healing” as communication partners can exercise agency in determining whether to speak or not (knutson & kristiansen, , p. ). in the cancer context, by choosing to remain silent, a person can retain a sense of autonomy in situations over which he/she feels little control (bartels et al., ). silence has also been found to be an effective tool for facilitating communication between patients and physicians. for example, oncologists use silence to demonstrate attentiveness and develop rapport with their patients (bartels et al., ). the present study is unique in highlighting the communicative importance of silence for the human-pet relationship. with pets, participants felt relieved of any obligation to speak, prompting them to reflect upon these experiences and redefine their meaning (knutson & kristiansen, ). such encounters provided an opportunity for participants to exercise agency and control, as well as, honor their pets’ agency in creating a mattering presence. . . impetus to hope the familiar excerpt, “hope springs eternal,” from a poem by alexander pope, hardly seems to capture the lived experience of participants in this study (pope, n.d.). as with meaning- making, hope did not materialize out of thin air. hope was not some inexhaustible resource, limitless in its abundance (folkman, ). instead, hope represented the participants’ continual striving towards healing and recovery. to illustrate, one participant referred to her dog as the motivation for “reaching for a better space in [her] health.” another described her cats as being the reason she has fought so hard, and continues to fight back against cancer. while hope appeared to have an element of choice, loss was deemed inevitable in the case of both people and pets. the pragmatic approach (e.g. funeral planning) taken by some participants, in anticipation of their own demise, seemed untenable when they spoke about their pets dying. the loss of a pet was inevitable, and yet inconceivable, even among participants who had lost a pet previously. some pets experienced a forced separation as they were relinquished to the care of another person while other pets departed from their human caretakers in death. in the latter case, losing a pet did not happen all at once. the effects of illness and aging slowly eroded the vitality of pets, bringing new caretaking responsibilities and ways of relating to pets. some pets seemingly “hung on” for participants, seeing them through cancer treatment or awaiting their return from the hospital. similarly, participants described not wanting to let go of their pets. to illustrate, the example concerning euthanasia offers a poignant description of the complex nature of loss when an animal’s life is in our hands. euthanasia is defined as “a humane method of terminating the life of an animal who is dearly loved, but has little or no hope for recovery” (lagoni, , p. ). it is no coincidence that the noun hope comes up in this definition of euthanasia. hope is also a verb that refers to something we do quite naturally when confronted with loss or some other threat to our well-being (butt, ; folkman, ; herth, ). in turn, the experience of loss can erode our sense of hope, resulting in hopelessness and despair (o’shaughnessy, laws, & esterman, ). formal theories of hope point to an individual’s capacity to find a path towards particular goals, as well as, his/her agency in achieving those goals (snyder, ). for example, snyder, irving, and anderson (as cited in snyder, ) define hope as “a positive motivational state that is based on an interactively derived sense of successful (a) agency (goal-directed energy), and (b) pathways (planning to meet goals)” (p. ). consistent with phenomenology (van manen, ), scholarly definitions and theories can be brought into a discussion to show where they might be lacking in experiential meaning. rather than attempting to substantiate a particular theory, i regard the participants’ accounts as providing valuable insights into the experiential meaning of hope and how it shows up in lived experience. snyder’s ( ) description of hope as a “rainbow of the mind” may in fact come closer to the meanings i gleaned from the participants’ experiences (p. ). for snyder, the rainbow symbolizes hope. it shows the “spectrum of human strength” and “makes us think of what is possible.” likewise, hope manifested in the participants’ ongoing efforts to heal and recover from cancer. as a psychological construct, hope can be thought of as a stable trait, as well as, a characteristic that becomes relevant in the context of specific goals (folkman, ; scioli, scioli-salter, sykes, anderson, & fedele, ; snyder, ). the recognition that hope has positive and negative aspects is central to theories of health promotion (scioli et al., ). hope has been linked to a lower risk of morbidity and greater use of adaptive coping strategies (butt, ; folkman, ; herth, ; snyder, ). according to one theory, hope is constituted by four underlying motive systems: attachment, mastery, survival, and spiritualty (scioli et al., ). people then draw upon various resources to fulfill their need for attachment (e.g. trust in family and friends), mastery (e.g. understanding of one’s priorities), survival (e.g. ability to regulate one’s emotions), and spiritualty (e.g. connection with god or a higher power). in one study, researchers examined the role of hope in restoring health among breast cancer survivors (scioli et al., ). the participants tended to rely upon attachment and spiritual resources, especially among those who were at a later stage of disease. other reports suggest that hope is context-dependent such that different needs become relevant depending on the stage or severity of a person’s illness (herth, ; pattison & lee, ). in line with scioli’s findings regarding the importance of attachment resources, researchers in a similar investigation cited spousal or family support as being a “catalyst” for restoring hope (o’shaughnessy et al., ). in this qualitative study, men (n= ) with prostate cancer and their female partners (n= ) were interviewed about their experiences during cancer as they pertained to the themes of love, hope, and faith. the results of focus groups and couple interviews suggest that from the time of diagnosis, participants must continually re-examine the meaning of hope with each new challenge that they encounter during their cancer journey. these findings support those of the present study regarding the fluid and dynamic nature of hope, and the importance of relationships for sustaining hope (butt, ; o’shaughnessy et al., ). when hope reached a low point, participants in the prostate cancer study reported feeling isolated and misunderstood (o’shaughnessy et al., ). despite the potential for pets to alleviate stress and loneliness, there was no explicit mention of pets in the either the prostate cancer or breast cancer study described above—a finding that reflects a general neglect of pets in the cancer care context, with the possible exception of therapy animals. another theory of hope posits the existence of a reciprocal and interdependent relationship according to which, coping promotes hope and hope promotes coping (folkman, ). in this view, hope is regarded as an essential factor that enables people to manage significant and persistent forms of stress such as chronic illness (folkman, ; herth, ; snyder, ). the experience of illness profoundly disrupts the everyday tasks that bring structure and coherence to a person’s life (folkman, ; herth, ; sidenius, stigsdotter, poulsen, & bondas, ). for participants in the present study, the topic of hope came up explicitly during discussions about loss, mortality, and declining health with respect to their own and their pets’ health. similar to using emotion-focused coping, participants sought relief from negative emotions by concentrating on the reasons they had to be hopeful (folkman, ). they tried to focus on positive test results and reports of their cancer being in remission or slowed in its progression. for instance, a participant with an inoperable tumor described his treatment as a “long shot” but quickly added “the cancer has stopped growing so that’s a good thing.” in the case of pets, participants reminded themselves that their pets still had years of good health ahead of them. in addition to supporting participants’ efforts to engage in emotion-focused coping, hope also provided an occasion for participants to draw upon meaning-focused coping. through careful consideration of their own and their pets’ well-being, participants sought to redefine their priorities in life (folkman et al., ; herth, ). the desire to be a good guardian to their pets impacted participants’ choices about diet, exercise, and substance use. participants described dog walking, for example, as a “feeling of pride” and a “part of the recovery.” in many cases, participants viewed pets an extension or reflection of their own health. as in the case of hope, caretaking had a restorative function, allowing participants to act in ways that were consistent with their values and beliefs. to illustrate, some participants spoke about having a lifelong affinity towards animals which led them to adopt pets themselves or become involved in animal rescue (mosteller, ). aside from their sense of duty towards animals, the mutual engagement of participants and pets in various consumption experiences (e.g. sleeping, eating) helped to guard against the stresses of daily life (scioli et al., ). the intimate contexts (e.g. family home, bedroom) in which consumption experiences took place, revealed not only the intensity of the human-pet relationship but also its moral implications. to repeat a quote from chapter : pets “keep their silence, yet they bear witness” to a person’s life (gavriele-gold, , p. ). perhaps it is not entirely accurate to characterize pets as being silent observers in relation to people. as discussed in the section, mattering presence, pets are far from silent given their vast repertoire of gestures and vocalizations, along with their facility in using these communication tools. nevertheless, pets are silent in the sense that they can’t speak for themselves, and as such, their silence carries a moral imperative fo r those who are entrusted to care for them (knutson & kristiansen, ; mosteller, ). this moral imperative was evident in the language participants used to describe their caretaking responsibilities (e.g. “they are bred as pets, so we are responsible,” “he didn’t ask to come into our family”). furthermore, caretaking was imbued with a perpetual sense of wonderment, or as one participant remarked, “that constant mystery of how [pets] think.” participants came to learn what their pets needed through trial-and-error, practice, and repetition. similar to the examples of play and intimacy, pets also influenced rules about when they should be fed, walked, groomed, or cuddled. just as pets couldn’t provide verbal reassurance that their needs were being met, participants couldn’t tell pets that they were trying to “rebuild” their health following cancer. they had to show their pets. for participants, cancer had taken much from them in the way of past (e.g. memories) and future experiences (e.g. the ability to conceive a child), and still cancer did not deplete them of hope (o’shaughnessy et al., ). in many cases, pets served as the impetus to hope, helping to restore hope as participants strived to heal and recover. . . animal-human divide the subject of this study is the human-companion animal relationship, but what separates pets from people, literally and figuratively? the bond between pets and participants seemed to imply a certain amount of distance and separation. pets sought refuge from loud noises or angry outbursts from people; participants retreated to their bedroom to convalesce after a round of chemo or radiation. while pets were generally welcome in these spaces, there were occasions when participants wished to be left alone. likewise, pets’ desire to be in close proximity with people, appeared to wax and wane with the vicissitudes in participants’ emotions and energy level (kerepesi, dóka, & miklósi, ; mosteller, ). the interchange of proximity and distance seeking was also evident in how pets responded to changes in participants’ body odour during cancer treatment. one participant recalled how her dog became preoccupied with sniffing her infected toe. another described how the chemo-smell on her skin acted as a deterrent to her ordinarily affectionate cat. as her cat declined to lick her hands, she remembered feeling “wrong and dirty.” the above findings raise some intriguing questions about the olfactory capabilities of cats and dogs. despite a growing number of studies concerning the potential for dogs to aid in cancer detection (marcus, a; wells, ), little is known about olfaction among cats, and even less is known about how chemical signals (e.g. pheromones) play a role in human-pet bonding (vitale shreve & udell, ). some preliminary research suggests that eye contact and gazing behaviour stimulates the release of oxytocin in both people and dogs (nagasawa et al., ). similar to behaviours such as social mimicry, body odours along with their associated hormones have social and communicative functions (bradshaw et al., ; vitale shreve & udell, ), and these have yet to be explored for their capacity to strengthen or, perhaps, weaken the human- pet bond. yet, another consequence of cancer treatment was its impact on participants’ ability to fulfil their caretaking responsibilities towards pets. for participants, caring for a pet helped to reinforce positive identities as pet guardians and caretakers (e.g. walking a dog is a “badge of honour”) (brooks et al., ; wisdom et al., ). in one study, researchers examined participants’ (n= ) adjustment to illness using the concepts of social support and the “work” of managing a long-term condition (brooks et al., ). participants were randomly selected from diabetes and heart disease registers. of those surveyed, reported having a pet currently. according to the results, pets assisted participants with practical work by motivating them to exercise and eat regularly (brooks et al., ; siegel, ). pets also contributed to emotional work and biographical work by offering comfort and providing a sense of continuity, respectively. having a pet enabled participants to derive a sense of purpose without the negative aspects (e.g. fear of being a burden to others) that can accompany interpersonal relationships (brooks et al., ). the conclusions reached by brooks et al. regarding pet owner identities are consistent with the results of a concept analysis of north american print media between and (zimolag, ). newspapers and bestselling books often depicted pet ownership as an everyday occupation in which people felt engaged and invested. caretaking responsibilities were carried out in both solitary (e.g. feeding their pet at home) and shared contexts (e.g. taking their pet for grooming). together, these two conceptualizations—zimolag’s notion of pet ownership as an everyday occupation and brooks et al.’s discussion of pets in relation to managing a long-term condition—provide a useful way to think about people’s social and professional occupations, and how these are impacted by critical life events such as cancer. in the current study, caretaking responsibilities were little comfort to participants when they had to tend to an ailing pet or deal with their own health challenges. some pets required treatments or procedures that stirred up painful memories of participants’ experiences during cancer treatment. in addition, participants expressed regret about not being a better parent or guardian to their pets with one remarking “i couldn’t even do it for myself.” researchers in another study found that there were few pet-related concerns in a sample of cancer patients (larson et al., ). as in the survey, most participants in the present study reported being able to call upon friends or family for help with pet care. although participants were grateful for their loved ones’ support, this kind of help did not ease the sense of duty that participants felt towards their pets. other caretakers simply did not possess that “level of relationship” or “one-on-one love.” just as a therapy dog was not the “same as having [their] own dog,” another caretaker was no substitute for the love and concern they had for their pets. participants described having an uncanny awareness of their pets’ needs. as well, the time they had spent with their pets during cancer treatment only seemed to deepen this one-on-one love. this last point regarding being on-leave from professional work is significant, considering that career issues have been identified as an important indicator of quality of life following cancer treatment (raque-bogdan et al., ; tighe et al., ). for some people, their work identity is central to their self-concept (raque-bogdan et al., ). work itself offers a distraction, and provides opportunities for people to network and socialize with others. in a qualitative study, breast cancer patients (n= ) reported experiencing a loss of control over their career success, work choices, and financial security (raque-bogdan et al., ). some participants indicated that their cancer experience had strengthened their desire to find meaning and purpose in their work. in the current study, half of the participants were retired, and five were on-leave from work. accordingly, having a pet may bring about a sense of routine and normalcy in the absence of professional work. the examples outlined above reflect normal and expected processes of proximity and distance seeking between participants and their pets. in contrast, some instances of human-pet separation were the result of unforeseen circumstances (e.g. allergies, illness, needs of current pets) that led to a complete and often permanent separation. participants described needing to re- home their pet with another family or having to return their pet to a shelter. although some participants identified behavioural problems (e.g. unwanted chewing, inappropriate elimination) as a significant challenge in bonding with their pets, none reported relinquishing their pet for these reasons (vitale shreve & udell, ). despite the loss of income among participants who were on-leave from work or had taken early retirement, personal finances were not cited as the primary reason for giving up a pet (sharkin & ruff, ). regardless of the reason, the decision to relinquish a pet can undermine the well-being of both pets and people (degue, ; sharkin & ruff, ). highlighted in the example regarding the dog who ended up on craigslist, pets are at risk for abuse, neglect, or being euthanized in the event that they cannot be adopted. as with participants in this study, guilt and remorse are common reactions, and can lead to further distress among people if a pet’s fate remains uncertain (sharkin & ruff, ). the foregoing discussion offers a literal interpretation of what i referred to as the animal- human divide, or more specifically, the circumstances that undermine the establishment of a bond or threaten to break existing bonds. the animal-human divide also speaks to what differentiates pets from people. to echo a participant, “pets never come out and say i love you,” and by the same token they never come out and say hurtful or unhelpful things (gavriele-gold, ). for some participants, questionable bedside manners figured prominently in their interactions with health care providers. these providers were described as being blunt, prejudiced, negative, and unwilling to accept responsibility for their actions. in the case of friends and family, repeated queries about how participants were feeling or reminders to “think positive” became a source of frustration. as people rallied around participants or avoided them altogether, one “constant” that remained for many participants was their relationship with their pets. this is not to say that pets were always helpful and people were always unhelpful. most participants emphasized the value of having support from friends and family members. even still, these informal supports were not without their complications. the results of the study described above by brooks et al. ( ) shed light on some key differences between the human-pet relationship and interpersonal relationships. although friends and family members were regarded as being supportive, at times, their actions could be seen as “nagging” and unhelpful. in contrast, participants often described their pets using terms such as soothing and calming. another difference concerned the role of reciprocity (i.e. responding in a similar manner to an offer of help or kindness) in participants’ relationships. the experience of being ill and having to rely upon people for help, tipped the scales of reciprocity, leading some participants to see themselves as a “burden” to others. in contrast, reciprocity remained intact in their relationships with pets. pets gave their love and companionship, and participants could reciprocate by feeding, grooming, and exercising their pets (brooks et al., ; wisdom et al., ). similar to findings from the present study, participants in brook et al.’s study were able to reclaim a sense of independence and autonomy through their role as a caretaker to their pets. consistent with a post-humanist approach (e. power, ), rather than emphasizing perceived deficiencies in the human-pet relationship, brooks et al. ( ) highlighted aspects of interpersonal relationships that were problematic, and had contributed to interpersonal difficulties. importantly, despite participants’ tendency to use anthropomorphic descriptions (e.g. my pet is my baby), they did not consider their pets to be the same or a substitute for a human relationship (brooks et al., ). such findings confirm those of the present study concerning participants’ attempts to reconcile what made pets similar to people and what made them “living beings” who were unlike anyone else. participants were careful to avoid humanizing pets, recognizing pets as having their own “dignity and space” in the world. furthermore, this discussion of the animal-human divide makes clear that this seemingly inextricable bond can be broken or disturbed by both ordinary and extraordinary circumstances (sharkin & ruff, ). . . transcendent relationships as noted in the section, mattering presence, the experience of being in-tune with another’s feelings and experiences (i.e. attunement) is the foundation upon which the human-pet relationship develops and evolves. findings from the current study suggest that attunement not only operates at the level of the individual participant and his/her pet but also transcends this relationship, allowing participants to experience meaning and connection in their interactions with nature and the people around them (a. j. lopez et al., ; pargament & mahoney, ; senreich, ). accordingly, the human-pet relationship can be thought of as a transcendent relationship or a form of spiritual kinship (girardin, ; meezenbroek et al., ). participants in this study described their pets as embodying particular ways of being in the world that compelled them to show greater care and compassion towards others and themselves; these ways of being served as guideposts, helping to foster participants’ spiritual development (faver, ). many participants described the importance of getting outside with their pets and enjoying the natural elements of the sun, rain, trees, water, and sand. nature seemed to have a rejuvenating effect on pets and people, often creating an occasion for transcendent play. as noted in ethological studies (howse et al., ; salazar kämpf et al., ), pets seemed to come alive, revelling in the feeling of being untethered by the dreaded leash or free to venture beyond the confines of their backyard. likewise, participants readily immersed themselves in nature, their sensory capacities heightened and engaged. recent studies suggest that engagement with nature offers psychological and physical benefits such as reduced stress, depression, and anxiety (oh et al., ). eco-therapy is an umbrella term for activities that encourage “sensory contact” with the natural world (kamitsis & simmonds, ; phelps, butler, cousins, & hughes, ). nature encompasses both human-made (e.g. parks, gardens, trails, campgrounds, etc.) and naturally occurring landscapes, as well as, weather patterns, vegetation, wildlife, and domesticated animals (blaschke, ; kamitsis & simmonds, ; merrick, ). in a systematic review and qualitative meta-synthesis of research on the experiences of people with cancer, researchers identified three ways that participants engaged with nature: indirect (e.g. viewing natural landscapes), incidental (e.g. going for a walk), and intentional (e.g. participating in outdoor adventures) (blaschke, ). participants tended to view nature as an “unburdened and uninterrupted space” (p. ). among the benefits derived from engaging with nature were aesthetic enrichment, increased physical activity, distraction from cancer, greater reflection upon life changes, and alleviation of stress. such benefits mirror those discussed by participants in the present study regarding the experience of interacting with a pet. pets were not only appreciated for their aesthetic appeal but also their capacity to help participants shift their attention to the present moment (kamitsis & simmonds, ). through their physical presence and tactile comfort, pets reminded participants of their relationship with the natural world. the health benefits of nature, long recognized in non-western countries, have been applied more recently to models of disease prevention and health promotion (oh et al., ). in one study, researchers conducted semi-structured interviews with participants (n= ) who had been diagnosed with a stress-related illness, and were currently participating in a week nature- based therapy (nbt) program (sidenius et al., ). the nbt program took place in an outdoor garden and involved a combination of gardening, mindfulness, and self-awareness exercises. participants described this outdoor space as being safe, familiar, and relaxing. the freedom with which participants could explore and experiment in the garden helped them to develop coping strategies that were aligned with their current needs and abilities. the researchers speculated that because nbt is experienced through cognitive and bodily engagement, the strategies that participants had developed in this setting were more likely to be activated in another setting. similar to the experience of being with a pet, nature-based activities are grounded in memories and physical sensations that become embodied through repeated engagement (sidenius et al., ). in the present study, participants’ engagement with nature was not limited to being in the outdoors. to illustrate, one participant described filling her fish bowls with live plants to encourage her fish to swim and play. as well, cats had artificial trees that allowed them to jump and climb. the findings from a previous study point to the value of bringing the natural world indoors, as an accessible and cost-effective intervention (phelps et al., ). in this study, participants (n= ) with breast cancer were asked to create and maintain a small indoor garden for a period of three months. the results of focus groups showed an increase in participants’ mood, confidence, and self-esteem following the intervention. similar to the experience of caring for a pet, tending to a garden gave participants a feeling of pride and responsibility. in spite of the parallels between nature-based activities and pet care responsibilities, few studies have examined how pets influence people’s engagement with nature. pets are often subsumed under the broad heading of nature, along with plants, rocks, and trees (blaschke, ). these natural elements, despite being amenable to manipulation by humans and animals, are far less intuitive and responsive compared to pets. in the present study, participants were not alone in their enjoyment of nature. pets took great delight in digging holes, hunting wildlife, barking at waves on the beach, and even engaging in untold adventures, or as one participant remarked “whatever cats do outside.” in addition, findings from this study suggest that pets also helped to enrich these natural spaces. to illustrate, one participant described how being accompanied by a dog can make walking in the forest “so much more profound” as the dog brings “a whole different set of eyes” to the experience. according to merrick ( ), spending time in nature with pets deepens our spiritual kinship with them. merrick explains that people experience an “environmental epiphany” when their relationship with nature shifts in a meaningful way. in the present study, such environmental epiphanies were evident in participants’ descriptions of the complexities and inconsistencies regarding their relationships with pets. for instance, participants described their reluctance to consume meat. in addition, participants talked about how some pets are abused by people, and others help to “elevate” people as human beings. with the exception of a participant who referred to cats as being “autistic,” participants felt that their cats were especially loving and attentive. participants in multi-pet households appreciated their pets’ affection towards their pet siblings and even unfamiliar animals. one notable exception is the betta fish. as a participant explained, these fish can’t live together because they fight. in the film rumble fish, the main character rusty james asks why the betta fish are kept in separate tanks to which his brother, the motorcycle boy, responds: “they belong in the river. i don’t think that they would fight if they were in the river, if they had the room to live” (coppola, ). similarly, it was clear from the participants’ accounts that the spaces, both natural and human-made, in which they endured the effects of cancer and its treatment, had a profound impact on their capacity to heal and recover. through their physical presence, pets helped to transform these indoor and outdoor settings into spaces of healing (faver, ; halm, ). along with enriching the human-nature relationship, the experience of being in-tune with a pet seemed to spill over into participants’ interactions with other people. pets acted as a “conduit” for communication between family members and friends (walsh, b), helping to ease the tension surrounding discussions of cancer (tannen, ). for many participants, cancer had left them feeling vulnerable and exposed. pets then became an extension of their body, shifting the focus away from participants, bringing levity into their interactions with others, and providing comfort when interacting with strangers (brooks et al., ). pets helped to ameliorate loneliness by providing an opportunity for participants to meet new people or develop more lasting social connections (brooks et al., ). one participant described connecting with a stranger over their mutual love for cats. two others recalled how their dogs alerted neighbours or passersby that they were in distress. the results of a multinational survey also lend support to the notion of pets as a conduit or “social bridge” between people (wood et al., ). for participants in this study, having a dog increased the likelihood of participants receiving support from friends and neighbours whom they had met because of their dog. even in the case of cats, participants reported receiving offers of pet care when they were ill or away on holiday (wood et al., ). one participant addressed the social facilitation effect of pets while also describing pets as a “bridge” between being a patient and being a “person again.” this participant remarked that having her dog hazel accompany her on daily walks helped to lift the shame of “not feeling okay in [her] body.” just by being themselves, hazel and other pets created a space in which they could coexist meaningfully with their human caretakers and help them “escape” from the stresses of cancer and everyday life. from the reassuring jingle of their pets’ collar or the pitter-patter of their paws racing towards them, participants knew that they were not “suffering alone.” aside from being a conduit for social interaction, pets’ role as a bridge also appeared to provide a touchstone to participants’ sense of being a person, and being a person outside of cancer. these two aspects are related to the concepts of loneliness and authenticity. loneliness results when there is a mismatch between an individual’s actual and expected social connections (bryan, baker, & tou, ). according to humanistic theories, well-being is enhanced when people are more aware of and accepting of their experience, in other words, more authentic in their relationships (pisarik & larson, ). empirical research suggests that authenticity can buffer individuals from the effects of loneliness by helping them to be in the moment rather than fixating upon negative thoughts and feelings which can lead to anxiety and depression (bryan et al., ). also discussed by participants in the present study, people with cancer are at risk for loneliness and isolation, particularly, when they are further along in their cancer journey (van der spek et al., ; yalom & josselson, ). accordingly, not only do pets ameliorate loneliness by providing companionship, but have the potential to ease this burden by encouraging authenticity. . implications . . play and social connection the scientific study of play has evolved from early theories concerning the evolutionary benefits (e.g. working in groups) of play for human culture and development. humanistic theorists increasingly regard play as an important means for facilitating self-expression, authenticity, and meaning-making (bryan et al., ; lockwood & o’connor, ). play also benefits pets by reducing stress and promoting motor skills (palagi et al., ; sommerville et al., ). much of the research on play and playfulness among adult humans has been conducted in the field of leisure studies (lockwood & o’connor, ). given the importance of play for reducing stress and strengthening social bonds, play should be encouraged in everyday life and, particularly, in the cancer context (lockwood & o’connor, ). to restate carver’s ( ) framework, if we acknowledge people’s efforts to play and reframe play as a health intervention, people are more likely to benefit from play. in the cancer context, health care professionals could suggest simple exercises that patients can do with their pets to promote play (marcus, b). hospitals and cancer clinics could allow pets to visit their human caretakers in the cancer ward. pet visits could be beneficial for other patients, as well as, health care workers in terms of enhancing morale and improving patient-provider relationships (lockwood & o’connor, ). for people who are returning to work following cancer treatment, employers could allow and even encourage their employees to bring their pets to work or make accommodations for them to work from home. such practices could go a long way to supporting the human-pet bond and easing a person’s transition back to regular routines. current efforts to promote the human-animal bond prioritize animal-assisted interventions (aais) in their models of care (marcus, a, b). with varying effectiveness, cats, dogs, rabbits, horses, and even dolphins have been incorporated into therapeutic programs for people with cancer, depression, trauma, autism, and aids (burgon, ; keaveney, ; williamson, ). aai has been endorsed by the national institutes of health (nih) as an important contributor to the health and well-being of people (vitztum, ). during therapy animal visits, patients can expect to sit calmly and pet an animal who is trained to provide comfort and stress relief (horowitz, ; johnson et al., ; wells, b). handlers who are often the animal’s primary caretaker could, perhaps, introduce an intervention to encourage gentle play between the therapy animal and the patient. certification programs require therapy dogs to be able to stay calm and avoid barking in novel situations (walsh, b). playfulness could also be an important quality for matching therapy animals with patients who are able to engage in more vigorous forms of physical activity including walking, playing a game of fetch, or engaging in rough-and-tumble play. it should be noted that people who report having a pet of their own may not be ideal candidates for animal-assisted interventions. as noted by participants in the present study, offering these kinds of interventions may stir up negative thoughts and feelings about being away from their pets during cancer treatment. moreover, research suggests that dogs show a preference (i.e. tail wagging) for playing with a familiar person over a stranger. therapy animals, although adept at providing support, may not be equally suitable for providing connection, meaning the kind of intimate and enduring relationship that can develop when people and pets share their lives together. as noted in the literature on coping behaviour, connection seeking is important for meaning-making. accordingly, the findings of the present study extend previous research by emphasizing the value of play for promoting health and well-being in both pets and people. . . enrichment and engagement as discussed in the section on transcendent relationships, natural and human-made spaces can have a profound impact on a person’s ability to heal and recover from illness. likewise, research suggests that environments in which pets are encouraged to be active and engaged, are effective at promoting rewarding relationships between pets and people (sommerville et al., ; strickler & shull, ). the practice of modifying a pet’s environment for the sake of stimulating play and exercise is referred to as enrichment (strickler & shull, ). enriched environments contain interactive features that prompt pets to explore their surroundings. with regards to indoor spaces, examples from the present study were fish bowls containing plants for playing peek-a-boo, cat trees for climbing, and toys for chewing and playing tug-of-war. pets also adapted objects in their environment, transforming ordinary household items into objects of play. for instance, one participant described how her cat created a “perpetual game” of pulling up the carpet every night while another shared how his dog turns mundane chores into a spirited round of chasing the vacuum or broom. enrichment also refers to opportunities for pets to socialize with people and other animals. for instance, puppies who are allowed to interact with their conspecifics from an early age show less anxiety when separated from their human caretakers, experience better welfare as adult dogs, and are more likely to be perceived as playful rather than aggressive (sommerville et al., ). in the present study, participants in multi-pet households felt that it was important for their pets to have siblings to play with, keep each other company, and model appropriate behaviours (e.g. staying off furniture). while most dogs seemed to enjoy both social play (i.e. involving people or animals) and object play (e.g. toys), some cats played with toys or other objects, only when their human caretakers were involved (bradshaw et al., ). among participants with indoor cats and those who were unable to walk their dogs regularly during cancer treatment, social play entailed tossing a ball around or using treats to entice their pets to play. these instances promoted bonding and mutual affection between participants and their pets. in contrast with findings from this study, other reports suggest that people’s beliefs about the importance of play for human-pet bonding do not always align with their behaviour. in spite of the almost $ billion that are spent on cat toys yearly (american pet products association, ), consumers are not necessarily engaging in social play with their cats, instead leaving cats to their own devices. keeping toys out all the time is problematic as cats often lose interest in objects the longer they are exposed to them (strickler & shull, ). considering that pets, particularly indoor cats, are vulnerable to inactivity and a lack of social interaction, human caretakers can attend to enrichment by introducing novel toys, rotating toys, allowing spaces for pets to hide and climb, and increasing the frequency and duration of social play (strickler & shull, ). the importance of enrichment for human-pet bonding should not be underestimated. in one study, researchers surveyed participants (n= ) about their interactions with their indoor cats. those who reported playing with their cat for at least five minutes at a time reported significantly fewer behavioural problems compared to participants who played with cats for sessions that lasted a minute (strickler & shull, ). given the cross-sectional design, we cannot assume that play necessarily leads to a reduction in behavioural issues among cats. however, it stands to reason that people who value play would be more likely to promote enrichment by engaging their pets in social play, providing pets with adequate stimulation, and investing time and energy to resolve behavioural challenges (donoff & bridgman, ). cats, more often than dogs, are relinquished to rescue shelters, often due to behavioural problems such as aggression or excessive urination (strickler & shull, ). a few participants in this study reported being repeatedly bitten or clawed by their cats, but did not see these problems as being serious enough to warrant giving up their cat. these participants attributed their cats’ aggressive behaviour to a history of abuse or abandonment by a previous caretaker. although people may have little choice with respect to relinquishing a pet, such as participants who were dealing with allergies or illness, this decision can evoke feelings of grief and remorse (sharkin & ruff, ). when inquiring about pets, health care professionals could ask whether people have given up a pet or contemplated doing so because of illness or other challenges, and connect them with counsellors or social workers who are trained to provide grief counselling. health care professionals could also draw upon the human-pet relationship to create enriched spaces for people undergoing cancer treatment and follow-up care. in line with the aims of eco-therapy, professionals could incorporate nature-based techniques in their practice. in addition to encouraging people to spend time outdoors, professionals could incorporate natural elements into the workplace such as plants, or windows that bring in sunlight and look out onto natural landscapes (kamitsis & simmonds, ). professionals could also integrate nature scenes into breathing exercises or use guided meditation as part of an outdoor walking tour. some people consider pets to be their primary social relationships, and view them as a “safe haven” during difficult times (kamitsis & simmonds, ). professionals could integrate pets into medical consultations or therapy sessions by allowing people to bring their pets to health care centres, visiting people in their homes, or using video conferencing technology such as skype to engage with people and their pets. . . empathy and imaginal coping the experience of being in-tune with another individual’s thoughts and feelings (i.e. empathy), and reflecting these back to him/her can be understood as the “spiritual dimension of the helping process” (faver, , p. ). empathy is at the core of all helping professions including occupations in education, medicine, nursing, counselling, and social work (carroll, ; faver, ). research suggests that empathy can be enhanced by providing opportunities for people to learn and practise skills such as listening and responding to emotional cues, and engaging in perspective-taking or role-playing (s.-e. brown, ; y.-f. (lily) tsai & kaufman, ). similar to the scientific study of play, child development research has been at the forefront of addressing the importance of pets for cultivating empathy in people (s.-e. brown, ; pachana et al., ). adopting a pet’s perspective encourages humility and respect for others (faver, ; mosteller, ). in one study, researchers examined the impact of playing with a computer-simulated virtual pet in a sample of children who did not have a pet previously (y.-f. (lily) tsai & kaufman, ). according to the results, children who spent more time playing with their virtual pet tended to score higher on measures of empathy and humane attitudes towards animals. children developed an emotional bond with their virtual pets whom they saw as having their own feelings, needs, and interests (e. power, ; y.-f. (lily) tsai & kaufman, ). the findings from the present study suggest that pets can promote empathic learning well beyond childhood and adolescence, fostering greater compassion towards others and oneself. for many participants, the “harsh reality” of having cancer was that some people simply can’t handle being around someone who is ill. people struggle to find the right words to say. they ask you how you are but they don’t necessarily want to hear the answer. they try to put a positive spin on things. they offer words that they assume will bring comfort. or worse yet, they avoid the person who is ill, pulling away when they are needed most. especially among individuals who were several years post-diagnosis, participants described feeling “forgotten” with respect to psychosocial support (phelps et al., ). people simply assumed that they are fine now. similar to the way in which pets act as a “social bridge” between people (wood et al., ), pets could model supportive strategies that friends and family members can emulate such as: allowing silence, encouraging play and silliness, doing activities that provide a distraction from cancer, granting people space to grieve and face their mortality, and simply being there. among health care professionals, the provision of psychosocial support could benefit from routine assessment about the presence of pets in a person’s life and the meaning of these relationships. such an assessment would ideally include questions about their pets (e.g. name, activities they enjoy together) and an invitation to share photos of their pets. professionals could also record the names of pets in a person’s medical file or clinical notes to encourage follow up conversations (horowitz, ). stories about pets and the photos and memories attached to them, are far from idle chatter or casual pleasantries. these stories represent something that, again has been addressed in child development research, but is all too often overlooked among adults, namely, the use of imaginal coping. imaginal coping involves drawing upon one’s imagination to deal with stressful situations, for example, by engaging in play, role-play, storytelling, or funny rituals (rindstedt, ). participants in this study often anthropomorphized their pets when sharing stories about them. participants talked more, laughed more, and discussed taboo topics like poop. some participants spoke about pets who had passed away, perhaps, in an effort to keep their memory alive. importantly, imaginal coping does not happen in a vacuum as another individual must be present to animate these stories and bring them to life (rindstedt, ). whether pets are the key players in a story, or the social bridge that draws people together, empathic learning and imaginal coping should not be discounted as mere child’s play. . limitations apart from the issues of trustworthiness discussed in chapter , the study has a number of limitations that warrant further consideration. these limitations concern three aspects of the research design: sampling and data collection, analytic methods, and interpretations of the findings. firstly, the sample was heterogeneous with respect to the participants’ age, gender, occupational status, stage and type of cancer, and the breed of their pets, thus, offering a diverse range of lived experience descriptions. nevertheless, the inclusion of a self-selected and non- probabilistic sample rules out the possibility of concluding that the study findings will hold true for other patient groups or the general public. aside from the participant with fish, the study did not take into consideration other types of pets kept in the home such as rabbits, birds, and reptiles. readers should also keep in mind the sample’s limited ethno-cultural diversity when interpreting the results. moreover, roughly half of the interviews were conducted in a coffee shop or campus location where pets are not permitted, thus, providing fewer opportunities to observe the participants interacting with their pets. although the use of pet photos and videos helped to elicit detailed stories and examples, participants may have been less willing to discuss personal topics in a public setting. secondly, aside from challenges with participant recall and social desirability, member checking was not a required technique among the methods employed to conduct the study. however, one potential strength of using member-checking is the ability to capture the participants’ reflections on the accuracy of the interview transcripts and the researcher’s interpretations of their experiences (lincoln & guba, ). although i sought to address these limitations by using verbatim transcripts and peer debriefing with researchers and practitioners, there exists the possibility that participants would have elected to make changes to the transcripts or researcher interpretations had i allowed them an opportunity to provide additional feedback on their participation in the study. moreover, member-checking would have been useful for gathering input from participants during the process of anonymizing their accounts and selecting pseudonyms for their pets (lincoln & guba, ). a third limitation applies to my interpretations of the findings, as well as, efforts to embed them in the broader research landscape. it was necessary to venture outside of the literature typically discussed (e.g. nursing, supportive care, counselling, etc.) and turn to innovative methodologies (e.g. ethological, nature-based) and research topics (e.g. play, pediatric populations) in order to explain the relevance of the findings. with this in mind, one notable caveat of the study is the emphasis upon silence as a tool for facilitating both human-pet and interpersonal communication. depending on the cultural background and relational dynamics of the individuals involved, silence can have different meanings and interpretations, signalling acquiescence in one setting and discord in another (bartels et al., ; knutson & kristiansen, ). a second caveat concerns the meaning of play for people and animals. based upon a close reading of the participants’ accounts, one might believe that play is a central and ubiquitous feature of the human-companion animal bond. however, this finding may not be applicable to people from cultures in which pets are viewed as status symbols to indicate wealth or prestige (blazina, boyraz, & shen-miller, ; hirschman, ). considering the potential risks presented by animals (e.g. allergies, zoonoses, physical injuries, etc.), pets may engender fear or indifference from people rather than playfulness (chur-hansen, mcarthur, winefield, hanieh, & hazel, ). furthermore, play may not be feasible or desirable among people with more advanced stages of cancer or other types of illness that compromise their immunity, energy level, dexterity, or mobility. participants in the present study who were on-leave from work presumably had more time to play with their pets, and, perhaps, tended to see these activities as being important to their relationship. in a similar vein, the responsibilities of caring for a pet would not necessarily have the same kind of restorative impact for people who are unable to provide adequate care to their pets for physical, emotional, and/or financial reasons (bozcuk et al., ). with some exceptions, gender appeared to have an impact on the type and intensity of play with men more often engaging in rough-and-tumble play and women opting for cuddling and playing games with their pets. beyond these apparent differences, the current research design does not allow for gender-based analyses of factors involved in human-pet bonding. . future directions the present study raises a several intriguing findings that would be useful to address in future investigations. firstly, the study confirms previous reports that hope is not only relevant to a person at the end-of-life but also to people who are contemplating their own death or the death of someone close to them (butt, ; folkman, ). for people with pets, the prospect of an early death becomes all the more pressing given the relatively short lifespan of many pets and the potential for life-threatening injuries (e.g. falls) or illness (e.g. cancer, ingesting toxic substances). some pets will undergo euthanasia (translated literally as “good death”) as a way to end their suffering, or, for reasons such as public safety, convenience, or population control (lagoni, ). less research has been directed towards understanding how best to support people as they prepare for their pet’s euthanasia than helping people cope with the aftermath of a pet’s demise (lagoni, ). findings from the present study demonstrate the importance of allowing pet siblings and human family members to be in attendance during the procedure. moreover, as pets cannot speak for themselves, it is critical that both health care and veterinary care professionals recognize and validate people for the “unspoken bond” that they share with their pets. euthanasia may be a person’s final act of caretaking for a pet who is gravely ill and suffering. among people who observe their pets “hanging on” for their sake, these individuals may benefit from veterinary grief counselling to work through their grief and bereavement. whether a pet dies from natural causes or euthanasia, preparing for this kind of loss can help people think about what having a good death might mean for them (pattison & lee, ). secondly, previous research suggests that women more often than men tend to discuss the topic of hope and the internal (e.g. self-esteem) and external (e.g. interpersonal relationships) resources that help them to remain hopeful (o’shaughnessy et al., ). although no such gender differences were identified in the present study, the lower uptake of the study among men and the resulting sample composition (nine women, five men) attest to the value of understanding how both men and women utilize hope as a strategy for coping with illness (folkman, ; o’shaughnessy et al., ). consistent with the negativity bias discussed in chapter , more research has been focused on studying the absence of hope and its relationship to depression and ill health (folkman, ). it would be useful in future investigations to explore how constructs such as hopefulness and playfulness differ according to age, gender, culture, stage of illness, and access to health care and social support (bozcuk et al., ). such investigations would also benefit from including the experiences of childhood survivors of cancer and young adults with cancer as these individuals are likely to have their own unique developmental needs and concerns (hopman & rijken, ; raque-bogdan et al., ). another area little explored concerns how people’s interactions with nature impact their lived experience (blaschke, ). people recovering from cancer can engage with nature through various means including plants, gardens, hospital courtyards, outdoor adventures, and nature-based therapeutic interventions. the existing research on nature-based activities is built upon an assumption that human-nature interactions can be assessed quantitatively through the use of systematic observation or self-report questionnaires (blaschke, ; sidenius et al., ). research suggests that people’s motives for engaging with nature, and its subsequent impact on their health and well-being, is highly personal and idiosyncratic (blaschke, ). such findings call into question the assumptions that underlie current models of research, specifically, whether nature can be administered or prescribed as a therapeutic intervention. currently, there are no clinical practice guidelines to support the use of nature-based activities for the prevention or treatment of illness (oh et al., ). methodological limitations of existing studies include small sample sizes and a lack of control for participant expectations. perhaps, qualitative studies might provide empirical evidence that encourages researchers and practitioners to dispense with prescriptive interventions and, instead, move toward an approach that validates people’ own resources and ways of coping with their illness. such an approach might also encourage policy makers to incorporate nature and natural elements into the design of health care settings that serve both adults and children. lastly, it is well established that social connection and social support are protective for the health and well-being of individuals (wood et al., ). less clear are the ways in which play helps to promote social connection, sense of community, adaptive coping strategies, and creativity (donoff & bridgman, ). the who recognizes play as being important for physical, mental, and cardiovascular health, as well as, overall fitness (donoff & bridgman, ). a burgeoning topic in the study of human play concerns the potential uses of urban design to foster spontaneous play. alongside this body of work are animal behaviour and animal welfare studies that are focused on the adaptive functions of play, primarily, in cats, monkeys and rats (donoff & bridgman, ). far less research exists on how and why people and pets play. considering that play helps to strengthen social bonds, in future studies, researchers could develop measures to assess the type, nature, and frequency of play as a potential indicator of the quality of the human-pet relationship (bradshaw et al., ; sommerville et al., ). in addition, there is a need for comparative studies of human play and animal play, as well as, greater alignment between these two related bodies of research (burghardt, ). . conclusion cancer, once considered an immediate death sentence, is increasingly regarded as a condition that requires long-term care and management (hopman & rijken, ; raque- bogdan et al., ). cancer survivorship refers to a continuum that encompasses different phases during which people encounter various challenges including changes in their health, physical appearance, relationships, and occupational status (kazanjian et al., ). emotional distress is prevalent among people with cancer, and is less amenable to relief using traditional medical interventions (baun & mccabe, ; marcus, b). the increased popularity of animal-assisted interventions in cancer care must be met by greater attention to the bond between people and their pets. more than half ( %) of canadians share their homes with at least one pet (cherniack & cherniack, ; perrin, ). cats ( . million) are the most common type of pet, followed by dogs ( . million), birds, rabbits, and fish (alberta ministry of agriculture and rural development, ; perrin, ). a common concern raised in the human-animal bond literature is that people are drawn to pets primarily because of a lack of human social support that comes with increased urbanization and modernization (blazina et al., ; gavriele-gold, ). such claims not only marginalize the experiences of people who consider pets to be one of their primary social relationships but they also overlook the possibility that pets can fulfill relational needs that no human being can. in adopting a phenomenological approach, this study aims to show the uniqueness of the participants’ experiences with their pets while also speaking to what is essential about the experience of bonding and living with a pet (van manen, ). phenomenology compels us to think about the relationship between who we are and how we act, thus, promoting greater thoughtfulness, tact, and ethical sensitivity in our professional activities and personal experience (van manen, ). in view of the foregoing discussion, the present study extends previous research by highlighting the importance of attunement for the human-companion animal bond. as a cornerstone of attachment theory, attunement refers to a transactional process whereby individuals become in-tune with and are able to reflect back one another’s feelings and experiences (blazina, ; lasher, ). similar to the attachment behaviours observed between infants and their caregivers, pets and participants often displayed proximity seeking (bowlby, ). at times, participants functioned as parents or guardians to their pets while, in other instances, pets provided a secure base for participants, offering them comfort and reassurance (kurdek, ). accordingly, pets not only served as attachment figures (e.g. children, secure base) for participants, but also fulfilled a variety of relational needs beyond attachment. such relational needs included friendship, companionship in play, leisure and rest, companionship while recuperating from illness, emotional support, spiritual kinship, connection to nature and natural elements, and unspoken connection through their mattering presence. by emphasizing attunement, this study illuminates a diverse range of bonding experiences that are relevant to the human-pet relationship, and draws attention to the importance of silence, an often underappreciated form of communication (knutson & kristiansen, ). finally, the study brings home the idea that hope is not a self-sustaining resource. it ebbs and flows, and, for some people, pets may serve as an impetus to hope. snyder ( ) regards hope as having a “natural relationship” with meaning in that meaning tells us what is important in life, and hope helps us move closer to what is meaningful to us. consistent with participants’ experiences in this study, other investigations suggest that the way in which doctors and nurses communicate about survival rates and disease prognosis has an impact on how patients experience hope (o’shaughnessy et al., ). professionals may attempt to dissuade people from relying upon false hope, or, in other words, unrealistic expectations about their future (folkman, ; o’shaughnessy et al., ). whether they be unrealistic or “the faintest hope,” as one participant described it, these seeds of hope may provide the necessary foundation for helping people find benefit in even the most traumatic of situations (folkman, ; snyder, ). moreover, people tend to redefine hope at different points in time, for example, transitioning from hopes of being cured or free of cancer to having their symptoms under control or maintaining a good quality of life (folkman, ; o’shaughnessy et al., ). by supporting people’s relationships with their companion animals, professionals can provide timely and meaningful care that is responsive to each individual’s unique experience of hope. ‘night sweet prince references alberta ministry of agriculture and rural development. 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( ). an evolutionary concept analysis of caring for a pet as an everyday occupation. journal of occupational science, ( ), – . https://doi.org/ . / . . appendices appendix a literature review search strategy sources: a search was conducted of pubmed, cinahl, psycinfo, and academic search premier. the following search terms were used to identify peer-reviewed papers published in english from to : “cancer,” “companion animal,” “spiritual,” “meaning,” and “self- efficacy.” an updated search was carried out in to capture additional papers. methods: after title screening, papers were selected for full review if the abstract contained the terms “pet” or “animal” and “cancer” or “oncology.” papers addressing the following subject areas were excluded: comparative oncology, veterinary oncology, and farm animal studies. additional data sources came from books and reference lists of empirical studies and review papers. papers were presented and discussed with the doctoral supervisory committee. results: the initial search returned over results. after removing duplicate entries and refining the search strategy using mesh terms (e.g. human-pet bonding), papers were retrieved. the final selection of papers (n= ) were screened and sorted based on their relevance to the topic. of these, papers were focused on cancer and companion animals (figure ). figure title and abstract screening to identify primary and secondary literature total n retrieved = articles for screening = pubmed ( ), cinahl ( ), psycinfo ( ), and academic search premier ( ) cancer and companion animals ( ), cancer and self-efficacy ( ), cancer and spirituality ( ), companion animals and self-efficacy ( ), and companion animals and spirituality ( ) articles accessed for full text and included in analysis duplications = appendix b recruitment poster a place of mind the university of british columbia the significance of pets for a person’s cancer journey we are conducting a study on how people experience their relationship with their pet as they are living with and recovering from cancer we are hoping to learn what makes the human-pet relationship, unique and meaningful to people who have had a cancer diagnosis for a period of at least months we are interested in speaking with people who see their relationship with their cat or dog as important to their cancer journey the principal investigator for this study is dr. arminée kazanjian, professor in the school of population and public health at the university of british columbia, ( ) - you may be eligible to participate if you: were diagnosed with cancer at least months ago and have had time to think about the importance of your pet since then currently have a cat or dog are at least years old and fluent in written and spoken english are willing to talk about your experiences in a confidential interview lasting between and hours you will receive $ to thank you for your participation if you would like to participate, or would like further information about this study, please contact nandini maharaj by email at n.maharaj@alumni.ubc.ca or by phone at - - thank you for your interest in the study! appendix c consent form t h e u n i v e r s i t y o f b r i t i s h c o l u m b i a school of population and public health east mall vancouver, b.c. canada v t z tel: ( ) - fax: ( ) - website: www.spph.ubc.ca consent form the significance of pets for a person’s cancer journey title of the study: exploring the lived experience of the human-companion animal relationship for people with cancer who is conducting the study? principal investigator: arminée kazanjian, drsoc, professor, ubc school of population and public health phone: ( ) - co-investigator(s): william borgen, phd, professor, ubc department of educational & counselling psychology, and special education phone: ( ) - nandini maharaj, phd candidate, graduate student, ubc interdisciplinary studies graduate program phone: ( ) - this research is part of ms. maharaj’s dissertation (public document) in fulfillment of a doctoral degree in interdisciplinary studies at the university of british columbia. the principal investigator and supervisor of this research is dr. arminée kazanjian. who is funding this study? the study is being funded by the social sciences and humanities research council (sshrc), through a doctoral fellowship (grant - - ) to nandini maharaj. why should you take part in this study? why are we doing this study? the purpose of this study is to learn more about how people with cancer experience their relationship with their pets (cats, dogs). research suggests that close, satisfying relationships are important for a person’s well-being. some people see their pets as an important and meaningful connection. with the exception of research on cancer patients and therapy animals, few studies have explored the relationship between people with cancer and their own pets. therefore, the aim of this study is to understand the meaning and significance of pets for people who are living with and recovering from cancer. what happens if you say “yes, i want to be in the study”? if you say ‘yes’, you will be interviewed in person for between to hours at a convenient place of your choice. we will be asking you to describe meaningful experiences that you have shared with your pet since you were diagnosed with cancer. we are particularly interested in collecting detailed stories that will help us to capture the meaning and significance of pets for people in their cancer journey. we will ask you to complete a short demographic survey (e.g. age, gender), the results of which will be used to describe, in general terms, the group of participants in the study. the interview will be audio-taped, transcribed, and analyzed for themes and patterns. photos of pets: you are invited to bring in photos of your pets to discuss during the interview. the photos can be cell phone images, for example, of daily experiences or particular events that you would like to share and that are meaningful to you. to ensure confidentiality, any personal or identifying information will be removed and a study identification number will be assigned to keep track of individual stories. the data file containing participants’ names will be encrypted (i.e. the information is unreadable) and password protected in the principal investigator’s secure office. only members of the research team will have access to the data. the data will be held for at least years after the study is completed and will then be destroyed in accordance with ubc policy. how will the results be used? the information that you provide in the interviews will be analyzed and reported in a doctoral dissertation. the study findings may also be published in journal articles or presented at academic conferences. upon completion of the study, the dissertation will be a public document that can be viewed through the ubc library. your name and your pets’ name(s) will not be included in any research reports or presentations. you have the option of receiving a brief summary of the findings. is there any way being in this study could be bad for you? there are no known risks for participating in this study. if some of the questions seem sensitive or personal, you can choose not to answer. will being in this study help you in any way? what are the benefits of participating? by taking part in this study, you will have the opportunity to share your experience with a group of researchers and inform research in this area. you may be helping future cancer patients and survivors by helping to communicate the importance of pets to health care professionals in research, academic, and cancer care communities. how will your identity be protected? how will your privacy be maintained? measures to maintain confidentiality your confidentiality will be strictly respected. the principal investigator, co- investigators, and research assistants will have access to the audio recordings and raw data. all study data will be identified only by a code number and kept in either a locked filing cabinet or in password secured computers. the tapes and transcripts will be kept for at least five years after the study is completed and will then be destroyed in accordance with ubc policy. in any reports of the completed study, you and your pet(s) will not be identified by name. will you be paid for your time/ taking part in this research study? you will receive $ for your participation in this study. your participation is entirely voluntary. whom can you contact if you have questions about the study? if you have questions about the project, you can contact the principal investigator, dr. arminée kazanjian (tel: - - , arminee.kazanjian@ubc.ca). to participate: please call nandini (nan) maharaj at ( ) - or send an email to n.maharaj@alumni.ubc.ca whom can you contact if you have complaints or concerns about the study? if you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the research participant complaint line in the ubc office of research ethics at - - or if long distance e-mail rsil@ors.ubc.ca or call toll free - - - . consent  taking part in this study is entirely up to you. you have the right to refuse to participate in this study. if you decide to take part, you may choose to withdraw from the study at any time without giving a reason and without any repercussions or negative impact.  your signature below indicates that you consent to participate in this study and that you have received a copy of this consent form for your own records. _________________________________________________________________________ participant signature date ____________________________________________________ printed name of the participant signing above earch findings. appendix d interview guide interview guide purpose of the interview: i’m interested in what your relationship with your pet(s) is like, how it is important to you, and what it has been like over time and during your cancer journey. i had asked you to bring in some photos today; at any point, if there’s one that fits with what we are discussing, we can talk about it. does that sound okay? you responded to the poster, (and identified yourself as someone with cancer) can you tell me how long your diagnosis was? pet information: tell me a little bit about your pet (name, age, and breed). is this your first pet? when did he/she come into your life? did you have your pet before or after your diagnosis? can you describe your relationship with your pet and what makes this relationship important to you? when we go back to when you got your pet(s), what was it like then? what has it been like since then? if they had their pet before their diagnosis, ask: tell me about your relationship wit h your pet before your diagnosis. what has it been like since then? eliciting specific stories: think back and try to recall a specific time during your cancer journey when you and your pet were really connecting. the more detail you can give is really helpful. when and how did it occur, what were you doing, what was your pet doing, describe the place, what did you say, what happened next, how did you feel, what was the overall feeling of this interaction or event? what else do you remember about this experience? what made it meaningful? what made it memorable? what was it like the first time this happened, the most recent time? note: when participants start coming up with explanations, opinions, or generalizations, i will try to bring them back to the level of concrete experience by asking: can you give an example of this? do you remember a specific instance when this happened? please describe the experience in as much detail as you can. closing question: is there anything else that you would like to say that we haven’t covered? interview questions for photo elicitation: i’m interested in what led you to bring in this photo. tell me about your experience with taking this photo. is taking photos of your pet something you would normally do? what was happening right before? what was it about this experience that you wanted to capture? can you tell me what this photo means to you? how does this represent your relationship with your companion animal? what were you feeling when this photo was taken? how are you experiencing the photo right now as we are looking at it? appendix e demographic questionnaire a place of mind the university of british columbia demographic questionnaire please answer the following questions by filling in the blank sections or checking the boxes where appropriate. if there are any questions that you feel uncomfortable answering, you can leave them blank. all information provided will be kept strictly confidential. your information: . age: □ - □ - □ - □ - □ - □ or above . gender: □ male □ female □ other_______________ . ethnocultural background: ____________________________________ . relationship status: □ single □ married/domestic partnership □ widowed □ separated □ divorced . highest level of education completed: □ less than high school □ high school □ university/college □ graduate degree □ other ____________ . current employment status: ________________________ . other than your pet(s), who lives in your household? please specify their relationship to you (e.g. son, spouse), but no names: ______________________________________________________________________________ ______________________________________________________________________________ cancer-related information: . type or site of cancer: ____________________________ . type of cancer treatment(s) received: _____________________________ . month and year of cancer diagnosis: ______________________________ . month and year of last treatment: ___________________________ pet information: i have a: □ cat □ dog or □ both cat(s) and dog(s) please describe each of your pets: for example: buddy, y/o dog, male, mixed breed ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ have you had any pets before your current cat and/or dog? □ yes □ no other types of pets currently in your household: ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ when did your pet come into your life: □ before diagnosis □ after diagnosis reason(s) for having a pet: ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ appendix f example of exploratory noting and isolating themes descriptive comments (plain text): the content of what participants said linguistic comments (italicized): participants’ use of language, both verbal and nonverbal conceptual annotations (underlined): the researcher’s questions, interpretations, and use of psychological constructs (j. a. smith et al., ) original transcript exploratory notes emergent themes p: [sighs] i think she’s been an integral part of my healing. and yeah i just think that she’s given me a lot of hope you know because the other thing i kept thinking when i thought oh my god i might actually just, i might die, like when you’re actually faced with that possibility, you’re told that is a possibility. my oncologist would sometimes say the most inane things without thinking you know which doesn’t actually help anybody. i don’t know there was this sense in me that oh i couldn’t, i’d never considered the possibility that i would leave her you know [sighs deeply] and she is my little baby you know and i feel like it’s my responsibility to, i’ve been lucky enough that she’s you know come into my life and she’s my little, my little pal in this life you know and i feel like it’s my responsibility. what would i, you know i mean i know she’d probably be fine without me. she’d live with my parents or something but at the same time like, i wasn’t prepared to let that happen so she gave me that will to fight and to just think “no that’s not going to be me, i’m going to be one of the percent who do survive, i’m going to be one of the percent that survive and thrive [emphasis]” pausing to reflect before continuing pet provides healing and hope. possibly related to previous comment that pet is a “beacon of light”; something to look forward to thinking about dying repetition, hesitation, switching from first to second person pronoun communication with doctor. words can hurt, harm; related to comments: attach to words, words hard to erase, create a story around those words hesitation, uncertainty awareness that i might leave my pet sighing, slower pace of speech pet is my baby, my pal, my responsibility. having a pet being akin to parenting, friendship. there’s a sense of obligation but also gratitude and feeling fortunate. repetition of the word little. literal meaning—being small but also speaks to caring and nurturing halting speech there is someone to care for pet if she dies fighting the disease. will to fight, will to survive and thrive. pet makes a difference in how she positions herself in relation to cancer, being a fighter emphatic beating the odds, odds may be against her integral to healing giving me hope confronting death attaching to words my responsibility will to fight survive and thrive © the author(s) published by s. karger ag, basel original research article dement geriatr cogn disord extra ; : – impact of the sonas programme on communication over a period of weeks in people with moderate-to-severe dementia benedicte sørensen strøm a jūratė Šaltytė benth b knut engedal c a faculty of health studies, vid specialized university, oslo, norway; b hØgh, research centre, akershus university hospital, lørenskog, norway; c norwegian advisory unit for aging and health, vestfold hospital hf and department of geriatrics, oslo university hospital, tønsberg, norway keywords communication · dementia · elderly · sonas programme abstract objectives: the primary aim was to examine how communication abilities changed over time among nursing home residents with moderate-to-severe dementia who were attending the sonas programme and to explore whether changes in communication abilities were related to cognitive ability. method: a longitudinal secondary descriptive study method was em- ployed, where people with moderate-to-severe dementia attended a -min sonas group session twice a week for weeks. the threadgold communication tool (tct) was complet- ed every weeks. results: the impact of the sonas programme on communication showed a significant non-linear trend in the tct, with an increase in communication abilities during the first weeks, regardless of the level of the residents’ cognitive abilities. thereafter it lev- elled out. no interaction was found between time and the frequency of attendances at sonas sessions. both verbal and non-verbal communication increased from the baseline, with non- verbal communication increasing quickly and verbal communication increasing marginally. conclusion: communication abilities increased with the time of the intervention, but the peak was achieved after weeks, after which the effect levelled out. this suggest that the sonas programme should be used for a period of at least weeks before evaluating its effect. © the author(s) published by s. karger ag, basel received: january , accepted: april , published online: june , e x t r a benedicte sørensen strøm, rn, mscn, phd faculty of health studies, vid specialized university po box vinderen no– oslo (norway) e-mail benedicte.strom @ vid.no www.karger.com/dee this article is licensed under the creative commons attribution-noncommercial-noderivatives . interna- tional license (cc by-nc-nd) (http://www.karger.com/services/openaccesslicense). usage and distribu- tion for commercial purposes as well as any distribution of modified material requires written permission. doi: . / dement geriatr cogn disord extra ; : – e x t r a strøm et al.: sensory stimulation www.karger.com/dee © the author(s). published by s. karger ag, baseldoi: . / introduction communication is considered to be a basic human need [ ] and can help a person to preserve a sense of identity, preventing loneliness, depression, and anxiety [ ] and helping to build relationships [ ]. for people living with dementia, language, speech, and non-verbal communication impairments are common symptoms [ ], and since language, speech, and non-verbal communication are “cognitive processes for sharing information” [ ], communi- cation problems will increase over time and with the degenerative process of dementia [ ]. it is also well known that people living with dementia are at risk of being marginalized by society [ ] and depersonalized [ ] due to communication difficulties. however, there is evidence that people with dementia, even those with severe dementia, do not completely lose their abilities to communicate non-verbally. they are still able (in some way) to produce meaningful communication by expressing their needs, wants, and desires through non-verbal behaviours [ ]. kitwood [ ] even suggested that well-being in people with severe dementia could be improved through successful collaborative communication, where, for example, the carer provides extra time to give the person the opportunity to communicate non-verbally in a meaningful way. the use of sensory stimulation for people living with dementia in care homes for persons with chronic diseases such as severe dementia there is a treatment goal shift from prolonging life towards palliative care, with the aim of optimizing quality of life, dignity, and comfort [ – ]. so far there has been no cure for dementia, and therefore psychosocial interventions are recommended to help a person living with dementia to cope with behav- ioural and psychological symptoms of dementia and improve their quality of life [ , ]. the importance of offering meaningful psychosocial interventions is confirmed both by people living with dementia and by their families and care staff as a way of providing person-centred care [ ]. however, residents, staff, and family can have a different view of what they consider as meaningful. residents experienced activities that addressed their psychosocial and social needs as meaningful, whereas staff and family viewed activities that maintained the person’s physical abilities as meaningful [ ]. a range of psychosocial interventions have been used with people with dementia [ , ], including several that involve sensory stimulation. sensory stimulation interventions such as music, light therapy, acupressure/reflexology, massage/aromatherapy, and doll therapy/pet therapy/toy therapy all refer to different techniques used to stimulate one or more of the five human senses with the overall aim of increasing alertness and reducing agitation [ ]. however, communication has seldom been the main outcome of intervention programmes. most often, the effect on behavioural symptoms has been the main outcome [ ]. the sonas programme, which is a multi-sensory stimulation programme, was developed by mary threadgold rcs (religious sisters of charity) in and involves cognitive, sensory, and social stimulation that includes all five senses: touch, smell, taste, hearing, and sight. the aims of the sonas programme are: ( ) to activate whatever potential for communication has been retained by an older person with communication impairment, ( ) to encourage the creation of an environment which will facilitate communication, and ( ) to have activation of the potential for communication recognized and accepted as an essential part of care planning for older people [ ]. of the six published studies of the sonas programme, only three have explored the effect on communication [ – ]. however, none of these studies have explored the immediate impact of the sonas programme on communication during the sonas sessions or used the threadgold communication tool (tct) to assess communication ability. dement geriatr cogn disord extra ; : – the programme consists of the following elements:• signature tune and greeting song• exercises to music• smell• a “sing-along” which includes three familiar songs • relaxation music/massage (the senses of taste and touch are stimulated) • music with percussion instruments • joining in proverbs • listening to poetry • contribution • second “sing-along” • closing song and signature tune strøm et al.: sensory stimulation www.karger.com/dee © the author(s). published by s. karger ag, baseldoi: . / the primary aim of the study was to examine how the communication abilities of nursing homes residents who had moderate-to-severe dementia changed over time as they partici- pated in a -week implementation of the sonas programme. another aim was to explore whether there was any relationship between changes in communication abilities and the cognitive abilities of the residents as well as other aspects of communication. method the study was a longitudinal secondary descriptive study with data partly obtained from another study [ ] conducted on people with moderate-to-severe dementia who were living in nursing homes in ireland. in addition to the controlled trial, we added data from one nursing home that had not participated in the aforementioned study. data collection was carried out at baseline, which was immediately after the completion of the first sonas session (t ). the other assessments were carried out after weeks (t ), weeks (t ), weeks (t ), weeks (t ), weeks (t ), and weeks (t ), all immediately after the sonas sessions, based on observations made during the sessions. setting and sample a convenience sample of persons with moderate-to-severe dementia – as classified by mini-mental state examination (mmse) scores between and – living in seven different nursing homes in ireland was recruited. the study took place over a period of weeks and the participants were recruited between january and march . residents were considered eligible to participate if they were more than years of age, spoke english, and were living in the nursing home on a permanent basis. persons at the end-of-life stage, those with major depression, those with current or partial remission, and those that had been exposed to previous sonas sessions were not included. the study took place from april to october . intervention the sonas programme was carried out twice a week over a period of weeks. each session lasted min and was conducted in groups with residents in each. a person trained by sonas apc to deliver the sonas programme (termed a sonas licensed practitioner) and an assistant led the sessions. the programme consists of elements and follows the same structure each time, in the belief that repetition is a way of helping the individual to remember [ ]. the participants are seated in a semicircle and the session begins with a welcome song where each one is individually greeted by name. the textbox shows the various elements of the sonas programme (fig. ). the programme consists of the following elements: • signature tune and greeting song • exercises to music • smell • a “sing-along” which includes three familiar songs • relaxation music/massage (the senses of taste and touch are stimulated) • music with percussion instruments • joining in proverbs • listening to poetry • contribution • second “sing-along” • closing song and signature tunefig. . the various elements of the sonas programme. dement geriatr cogn disord extra ; : – e x t r a strøm et al.: sensory stimulation www.karger.com/dee © the author(s). published by s. karger ag, baseldoi: . / assessments the tct, which measures communication abilities, was the main outcome measure. the tct is a proxy-based instrument designed to assess communication abilities in persons with dementia after attending a sonas session. the tct consists of items, and each item is graded from to , from no evidence to frequent evidence of communication [ ]. a psycho- metric evaluation of the tct concluded it to be a valid instrument, suitable for measuring communication among people with dementia [ ]. assessment with the use of the tct was performed at baseline and thereafter every weeks, carried out by the sonas licensed prac- titioners immediately after the sonas session. the nurses collected the residents’ demographic data from medical records and nursing records at baseline. the degree of cognitive dysfunction was assessed by the mmse. the ques- tionnaire comprises questions that cover orientation, memory, reading and calculation, recall, and language. each question is scored, and the sum score can vary between and . a higher score denotes better cognition [ ]. the mmse has been found to have satisfactory reliability and construct validity [ ]. the instrument was used by the nurses before the first sonas session as an inclusion criterion and thereafter at and weeks. analysis the participant characteristics are described as means and standard deviations (sd) for continuous variables and as frequencies and percentages for categorical variables. to assess a profile in tct score throughout the follow-up period, a linear mixed model with fixed effects for time up to second-order and random effects for residents nested within nursing homes was estimated. to test whether the number of sessions attended was associated with the time profile of the tct, a model with the number of sessions attended and interaction between number and time was estimated. the analyses were also stratified by moderate and severe dementia at baseline by esti- mating the same model with additional fixed effects for dementia status and interaction between dementia and time. a significant interaction would imply differences between those with moderate and those with severe dementia regarding the time profile of the tct. a trend model for verbal and non-verbal communication components based on the two- component structure revealed during the psychometric evaluation of the tct [ ] was also assessed. the analyses were performed in spss v and sas v . . results with p values < . were considered statistically significant. results participant characteristics and attendance the mean age of the participants was . ± . years, and the majority ( . %) were women. they had a mean mmse score of . ± . and a mean communication ability (tct score) of . ± . at baseline. of the participants, had severe dementia and had moderate dementia, according to the cut-off on the mmse of / (table ). the participants were reported to have attended the sonas programme for an average of . ± . sessions (range – ), and of the participants assessed at baseline, completed the study. impact of the sonas programme on communication we found a significant non-linear trend in tct score from baseline to weeks (t ). the tct score increased significantly from baseline to weeks (t ), this effect ceasing after dement geriatr cogn disord extra ; : – the programme consists of the following elements:• signature tune and greeting song• exercises to music• smell• a “sing-along” which includes three familiar songs • relaxation music/massage (the senses of taste and touch are stimulated) • music with percussion instruments • joining in proverbs • listening to poetry • contribution • second “sing-along” • closing song and signature tune strøm et al.: sensory stimulation www.karger.com/dee © the author(s). published by s. karger ag, baseldoi: . / weeks, with a non-significant trend to a decrease in the last weeks (fig. ). a significant difference in tct was seen at most time points, but not at the observation points between weeks and (table ). the interaction between the time and number of attendances was not significant, indicating that the time profile of the tct is not affected by the number of attendances. however, an increasing number of attendances was associated with higher tct scores, starting after weeks (p = . ) and getting stronger throughout the follow-up period (p = . after weeks). as can be observed on figure , a significant difference in communication ability was found between those with severe and those with moderate dementia at baseline (p = . ). the difference remained significant at all six time points: p = . at t –t , and p = . at t . further, an increase in communication was seen for both groups, with a peak at weeks, mimicking the profile of the total group of residents (fig. ; table ). gender male ( . ) female ( . ) degree of dementia severe (mmse score – ) ( ) moderate (mmse score – ) ( ) age, years . ± . mmse score . ± . tct score . ± . values are presented as n (%) or mean ± sd. mmse, mini-mental state examination; tct, threadgold communication tool. table . characteristics of the participants (n = ) tc t sc or e baseline weeks tc t sc or e baseline weeks mmse score – mmse score – fig. . mean threadgold communication tool (tct) score during weeks. fig. . difference in mean threadgold communication tool (tct) score found between those with severe and those with moderate dementia. mmse, mini-mental state examination. dement geriatr cogn disord extra ; : – e x t r a strøm et al.: sensory stimulation www.karger.com/dee © the author(s). published by s. karger ag, baseldoi: . / ta bl e . p v al ue s of t ct s co re s tc t sc or e tc t sc or e – co gn it iv e ab ili ty tc t sc or e – ve rb al a nd n on -v er ba l c om m un ic at io n m m se s co re – m m se s co re – ve rb al no n- ve rb al m ea n di ff er en ce ( % c i) p va lu e m ea n di ff er en ce ( % c i) p va lu e m ea n di ff er en ce ( % c i) p va lu e m ea n di ff er en ce ( % c i) p va lu e m ea n di ff er en ce ( % c i) p va lu e t v s. t t v s. t t v s. t t v s. t t v s. t t v s. t . 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( – . ; . ) . t = b as el in e, t = w ee ks , t = w ee ks , t = w ee ks , t = w ee ks , t = w ee ks , t = w ee ks . t ct , t hr ea dg ol d co m m un ic at io n to ol ; m m se , m in i- m en ta l s ta te e xa m - in at io n. dement geriatr cogn disord extra ; : – the programme consists of the following elements:• signature tune and greeting song• exercises to music• smell• a “sing-along” which includes three familiar songs • relaxation music/massage (the senses of taste and touch are stimulated) • music with percussion instruments • joining in proverbs • listening to poetry • contribution • second “sing-along” • closing song and signature tune strøm et al.: sensory stimulation www.karger.com/dee © the author(s). published by s. karger ag, baseldoi: . / based on the two-factor solution (verbal and non-verbal communication found in the psychometric evaluation of the tct [ ]), we used the two subscores based on the factor analysis to explore the impact of the sonas programme on verbal and non-verbal communi- cation. the result shows that both aspects of communication ability increased from the baseline (fig. ). however, verbal communication abilities increased slightly and nearly linearly (p = . for the second-order time component), while non-verbal communication improved rather quickly from baseline to weeks, then levelled out and marginally disim- proved towards weeks (fig. ), with this pattern mimicking the profile of the total tct (table ). discussion a significant non-linear trend in the ability to communicate was found, with an increase from baseline to weeks. after a peak at week , improvement ceased. no significant inter- action between the time and number of attendances was found. for persons with moderate dementia as well as those with severe dementia, a significant improvement in communication ability was reported, with a pattern similar to that for the entire group of residents. furthermore, both verbal and non-verbal communication abilities increased from baseline to weeks: verbal communication increased slightly and even nearly linearly, whereas non- verbal communication improved quickly at the beginning and then levelled out at the end. these findings will now be discussed. the pattern of changes in communication abilities observed in this study is not consistent with the findings from a previous study [ ]. strøm et al. [ ] reported a significant improvement in the communication abilities of those who attended the sonas sessions during the -week study period, but no overall effect. one explanation for these inconsistent findings could be that the studies used different communication measures, which also measured different aspects of communication. the previous study by strøm et al. [ ] used the holden communication scale (hcs), while the present study used the tct. the hcs is a measure of memory and awareness as well as of communication, while the tct mainly assesses non-verbal communication. another reason for this seeming disparity between the findings of the two studies could be that the hcs assessed communication ability completely independently of the sonas programme, while the tct was used to measure communication ability immediately after a sonas session. by assessing the impact immediately after the session, the tct is arguably a truer measure of the impact of the sonas programme on communication. tc t n on -v er ba l baseline weeks non-verbal verbal tc t v er ba l fig. . difference in mean threadgold communication tool (tct) score found between verbal and non-ver- bal communication ability. dement geriatr cogn disord extra ; : – e x t r a strøm et al.: sensory stimulation www.karger.com/dee © the author(s). published by s. karger ag, baseldoi: . / a similar study [ ] which assessed the effect of the sonas programme from the perspective of sonas licenced practitioners and other care home staff found that the sonas programme had a number of positive, predominantly short-term, effects on the participants. positive effects were reported in relation to mood, cognition, communication, interaction, and activity, with residents facilitated to speak and interact with the other participants during the sonas sessions, where an increase in the length of residents’ conversation was observed. it was suggested that this could be linked to the residents feeling more confident. changes in non-verbal communication were also observed, both during sessions and on days when the intervention did not take place. according to bayles and tomoeda [ ] one important element of sensory stimulation is to repeat the stimulation in the same way from one session to another; this has been reported to be appropriate for residents with moderate dementia as well as for those with severe dementia [ ]. this recommendation was effectively followed here, as the sonas programme involves a repetition of stimulation, with every sonas session having the same structure, in the belief that repetition is a way to evoke memory [ ]. it is difficult to explain why the increase in communication abilities both for residents with moderate dementia and for those with severe dementia ceased after the -week time point. it could be that a peak was reached at weeks, beyond which it was not possible to achieve further improvements in communication abilities, given the reduced cognition in persons with dementia. it is also possible that the progression of dementia after weeks influenced the results, but this again is unlikely, because the persons with moderate dementia as well as those with severe dementia demonstrated similar upward trajectories in commu- nication abilities over the -week period. another possible explanation is that the partici- pants could have experienced boredom from attending the same programme over a long period, which supports the need for different of types of stimuli [ ]. this can be tested in a new study. however, even though the results show an improvement in communication ability only over a -week period, we should see this as clinically meaningful. one of the core components of providing psychosocial interventions to persons living with dementia is the belief that it can give them the experience of quality of life during the actual intervention, even if they forget afterwards that they have attended a session. this also raises the question about how to evaluate psychosocial interventions, since the focus is usually on long-term effect instead of on the value for the person’s quality of life in the present situation. the characteristics of the person, described by cohen-mansfield et al. [ ] as personal attributes, are likely to influence a person’s ability to engage with stimuli. personal attributes can include cognitive function, past interests, apathy, a propensity for enjoying social activ- ities, and hearing and vision [ ]. in the present study we did not control for all of these personal attributes, but we did analyse communication abilities of persons with moderate and severe dementia and found a similar pattern of increased communication abilities from baseline to a peak at week . an explanation could be that implementing something new for a group of people has an effect in itself. as expected, communication abilities were poorer among those with severe dementia than among those with moderate dementia. however, a similar trend of improvement indicates that it is possible to use the sonas programme regardless of the degree of dementia, and that communication abilities can be improved through a sensory intervention programme. it also supports the knowledge that communi- cation is not totally lost in people living with severe dementia. even though problems with verbal communication are expected to worsen as part of the dementia process [ ], both verbal and non-verbal communication increased from baseline to a maximum at weeks in the present study. verbal communication increased slightly, whereas non-verbal communication increased from baseline to weeks and then remained almost stable over the last weeks. dement geriatr cogn disord extra ; : – the programme consists of the following elements:• signature tune and greeting song• exercises to music• smell• a “sing-along” which includes three familiar songs • relaxation music/massage (the senses of taste and touch are stimulated) • music with percussion instruments • joining in proverbs • listening to poetry • contribution • second “sing-along” • closing song and signature tune strøm et al.: sensory stimulation www.karger.com/dee © the author(s). published by s. karger ag, baseldoi: . / these findings are not consistent with those of the previous study by strøm et al. [ ] which found that the sonas programme had less of an effect on aspects of communication that required the ability to give a verbal response. one explanation could be the difference in assessment measures used in the two studies; another explanation is that the immediate effect of the sonas programme is greater, being reported immediately after the sessions, as compared to a possible effect reported on another day. strengths and limitations of the study to our knowledge, this is the first study to assess the impact of the sonas programme on communication where the assessments were carried out during the sessions using the tct. a limitation of the study is that we had a small sample size and that we used an observational design. however, the aim was not to study the effect in relation to a contrast condition, like care as usual, but to examine the impact of the sonas programme during the sessions. another limitation was the use of the mmse to assess the residents’ cognitive ability. even though the mmse has been reported to be inadequate for people with minimum literacy skills and to record cognitive changes in people with severe dementia, it was used in this study because the nursing homes were already using the tool and since cognitive ability was not used as an outcome. the study’s strengths are its use of a psychometric-tested dementia-specific instrument to assess communication ability and the scarcity of evidence of psychosocial interventions on communication in people living with dementia. implications the results of this study showed that communication abilities increased with the time of the intervention in the sonas programme among nursing home residents with moderate-to- severe dementia. however, the peak of this increase was achieved at weeks, after which it ceased. this indicates that when using the sonas programme, one should continue for at least weeks before evaluating the effect. at the same time is it important to value the impact it has on a person’s quality of life at the present moment. we would like to see an extension of the tct based on the findings of the present and previous studies mentioned here. evaluating smell and taste should be added to the instrument, which would open up the possibility of using a “new” tct to evaluate all aspects of the sonas programme. it would also be useful to apply other methods for assessing the impact of the sonas programme, such as dementia care mapping or video recording of sessions, to facilitate an evaluation of the different components of the sonas programme. acknowledgements the authors would like to thank bernadette pinto sjc, sinead grennan, and noreen keane for their detailed proof-reading. statement of ethics the study was approved by the regional ethics committee of norway (rec) under regis- tration no. irb . no ethical approval was needed in ireland, except from the board of management in each nursing home. informed consent was obtained from the person with dementia, or from the next of kin if the person with dementia did not have the capacity to complete the consent form. dement geriatr cogn disord extra ; 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research cilt: sayı: nisan volume: issue: april www.sosyalarastirmalar.com issn: - http://dx.doi.org/ . /jisr. a health project for art / creative arts therapist “the story of a project preparation process” hülya erbaba• roberto penna** Öz sağlık bakımı, multidisipliner bir çalışma alanıdır. uzmanlık alanları ve seviyeleri arttıkça hizmet kalitesi de artmaktadır. bu durum, yaşam kalitesini ve hastanın beklenen ömrünü etkiler. hizmet çeşitliliği nedeni ile bu alan sürekli olarak yeni profesyonelleri kucaklamaktadır. geçen yüzyılın ikinci yarısında sağlık sektöründe yer alan mesleklerden biri de sanat / yaratıcı sanatlar(müzik-dans terapisi, evcil hayvan terapisi, palyaço tedavisi vb.) terapistliğidir. sanat ve yaratıcı sanatların avrupa ve diğer gelişmiş ülkelerde sağlık bakımında kullanımı giderek yaygınlaşmaktadır. bu terapiler hem yetişkinlerin hem de çocukların iyileşme sürecinde destekleyiçi ve stresi ortadan kaldırıcı olarak ortaya çıkmakta ve hastaların kendilerini klinik tedavilere daha fazla dahil etmelerini sağlamaktadır. yine de bilinmesi gereken şey, bu faaliyetlerle ilgili tüm mesleklerin ortak bir tanımlaması bulunmamakta ve çoğu gönüllü olarak değerlendirilmekte ve çıkarlarının temsil edildiği uluslararası platform eksikliği çekmektedirler. bu çalışma, sağlığı geliştirme alanında sağlık çalışanları ve akademisyenleri tarafından hazırlanabilecek uluslararası projeler için bir örnek olarak hazırlanmıştır. anahtar kelimeler: sanat terapileri, sanat projeleri, bakım, sağlık, geliştirme. abstract health care is a multidisciplinary workplace. as the expertise areas and levels increase, the quality of service increases. this situation, affects the quality of life and the expected lifespan of the patient. due to the diversity in service, this field is constantly embracing new professionals. one of the professions that participated in the second half of the last century in the healthcare sector is art / creative arts(like music, dans therapy, pet therapy, clown therapy and so on) therapist. creative and performing arts have been expanding their use in healthcare in europe and other developed countries gradually. those therapies come into view as supporter and stress-reliever during the healing process of both adults and children and provide patients to feel themselves more involved in clinical treatments. however, there is no common identification of all professions related to these activities: most of them are considered on the volunteer basis and suffer from the lack of international platforms where their interests are represented. this study has been presented as an example for international projects which can be prepared by healthcare providers and academicians in health promotion field. keywords: art therapies, art projects, health care, care and art. -introduction why are health projects necessary? as the areas of expertise and levels increase, the quality of health service is increasing. this affects the quality of life and the life expectancy of the patient positively. one of the professions that joined the health sector in the second half of the last century is the art therapist. art therapies have been used in various forms for centuries. however, in the literature, the concept of art therapy was first described in the study conducted by adrian hill in with tuberculosis patients. in this study, hill suggested that painting could be a tool to explain anxiety and traumatic experiences for patients(akhan, , s ; case & dalley, ; malchiodi, ). art therapy, in general, may be referred as a special name for philosophical therapy or philosophical counseling. art therapy, which is a specific field of philosophical therapy, works on themes such as self- awareness, thinking about self-awareness, time and encourage (filiz, ). research emphasizes that art can touch/affect mind and body at the same time (siegel, ). art therapy is defined as therapeutic interventions with the use of art materials in the presence of a specialist who has completed her / his education in the arts field to reduce physical and psychological problems of patients or healthy people, to increase motivation and to help them cope with stressors(akhan, ; case & dalley ; malchiodi, ). on the other hand, art therapist is the person who uses her/his artistic skills and experiences to make patients or healthy people feel better (silver, hervey, peterson, lewis & mcguire, ). application of art therapy has based on the psychosocial theories related therapeutic tools that assist resolving disagreement of human development and education, as well as psychodynamic, cognitive, interpersonal and other emotional • ph.d. candidate yıldırım beyazıt university, nursing department. hulyaerbaba @hotmail.com ** supervisior of administrative management. azienda ospedaliero universitaria ospedali riuniti ancona - italia uluslararası sosyal araştırmalar dergisi cilt: sayı: the journal of international social research volume: issue: - - conflicts. these therapeutic tools can be expressed as providing awareness, developing social skills, behavior management, problem-solving, anxiety reduction, reality orientation, and raising self-esteem (rubin, ;sayar, ) in the light of this information, types of art therapies could be sorted under four headings: music, visual arts, movement-based creative expressions, expressive writing (sayar, ; nccata, ). it is difficult to find the sufficient number of qualified personnel who can apply art therapies in that field that requires a too high level of professionality. the number of therapists around the world is few as in europe and the recognition of occupational competencies of those few therapists is inadequate. because ones who completed music/art education and want to be a therapist do not know which education standards are necessary for being a therapist; and those who have studied medicine/health sciences and are going to be an art therapist do not have a guide on which way should be followed. further, ones who achieve being a therapist in some way have trouble finding a suitable position for themselves in the labor market. therapists/artists in this group cannot express the value of talents and diplomas they have, or they have not been appreciated. as the labor market is not satisfactorily informed regarding these occupations. due to the fact that employers look at cost effectivity, they desire to measure the benefit of skills that therapist show in the field. nevertheless, there are no indicators meeting these expectations; therefore, they are not able to confirm available knowledge. thus, the use of art therapies in the field has been approached with suspicion. moreover, the visibility and the prevalence of evidence-based work on these occupations are not satisfactory and social awareness is insufficient. hence, supply-demand equilibrium for therapists cannot occur. the dominance of pharmacological treatment trends in a sector causes therapies still to be viewed as luxurious. further, therapist/therapy payments by social security institutions are not yet on schedule due to the inadequacy of evidence-based studies and, some health policies. musa project that was initiated in order to underline these issues and provide a platform bringing therapists together for expressing their problems was conducted with a multidisciplinary viewpoint to a global problem. program development in health-related issues, policy making, planning of projects, and integrating the results obtained into processes have been assessed as extremely necessary steps to ameliorate and protect public health (national research council (us), ) healthcare services are conducted with projecting even in the smallest units due to their specificity and their direct impact on human life. therefore, health projects contribute to public health both directly and indirectly. many non-governmental organizations, consortiums, and other constitutions; particularly the world health organization (who), voluntarily fund health-related projects. similarly, musa is a project conducted with the financing of "education, audiovisual and culture executive agency by the european commission" and the co-financing of participating institutions. with this project; these are aimed: ( ) protecting professional rights and liabilities of musical artists, creative and performance artists in health sector in eu ( ) helping reciprocal recognition of their vocational training and profiles by other countries ( ) forming a supranational platform protecting their rights and profits and, representing them. it has been predicted by eu that those objectives might be attained with some instruments which are the national / european qualifications framework (nqf / eqf) and the european credit system for vocational education and training (ecvet). the main objective of this project is to describe occupational profiles related art therapies which form adjuvant treatment and, are highly valuable for supporting traditional clinic healthcare services and, ensure their recognition. therapy areas covered under the project are music therapy, clown therapy, pet therapy, creative stage and performing arts therapy, occupational therapies. the other purpose of musa project is to portray the state of the creative stage and performing arts to all individuals interested in this topic in europe, set up an online musa portal to create a strong communication network for therapists and citizens, and make this sector accessible. -method and results this study has been conducted to design project for improving health and to explain how the project progresses from intellectual phase to conclusion phase. scientific methods have been used at every stage of the project including the identification of the problem, literature review, needs analysis, conceptual framework, project management. seven organizations from countries joint the whole process of this project. the project has been divided into seven work packages (wps): three transversal wps and four specific wps; each are addressing specific activities necessary to achieve the final objectives of the project. the musa project started on january and ended on june . . - as a result of the blockages in the human resources department, the formation of the project idea . -preparation of logical framework uluslararası sosyal araştırmalar dergisi cilt: sayı: the journal of international social research volume: issue: - - . - describing stakeholders/analyzing . -analyzing problem . -target analysis . -budget . -submission to financial support institutions . -accept and application as a result: it is difficult to find a sufficient number of qualified personnel who can apply art therapies in that field which requires a too high level of professionality. the number of therapists around the world is few as in europe and the recognition of occupational competencies that those few therapists have is insufficient. this lies on the basis of the problem that individuals who want to be art therapists cannot reach guides helping which way should be followed. in addition, since the visibility and the prevalence of evidence-based work on these occupations are not satisfactory, social awareness is insufficient too. hence, supply-demand equilibrium for therapists cannot occur. the dominance of pharmacological treatment trends in the sector causes therapies still to be viewed as luxurious. further, therapist/ therapy payments by social security institutions are not yet on schedule due to the inadequacy of evidence-based studies and some health policies. musa project that was initiated in order to underline these issues and provide a platform bringing therapists together for expressing their problems was conducted with a multidisciplinary viewpoint to a global problem. . -as a result of the blockages in the human resources department, the formation of the project idea. project meetings are routine works done for fondazione dell'ospedale salesi onlus at salesi children hospital. this project idea has been formed with the belief that the issues about art therapies/therapists that they have been practicing for many years amateurly (such as education standardization, unacceptance of these initiatives as treatment by social security institutions, vocational definitions not to be identified by vocational qualification institutions, and concerns of physicians regarding whether such complementary therapies are evidence-based or not) need to be moved to a platform. it is foreseen that the project has a very important social responsibility in the sense of defining an important deficit in the field of health and proposing solutions to policymakers. from this point, the requirements of the project cycle management known as a professional method have been acted upon. the most important features of "project cycle management" can be evaluated as detailed and participatory needs analysis, need-directed solutions, targeted planning, and implementation, measurable/verifiable effects, focus on sustainability, standard practices, and documentation. in this framework, project cycle management consists of six steps in general: a) identifying the project idea, b) analyzing the project idea, c) pre-evaluation, d) finance, e) implementation, f) evaluation (tekindağ, ). . -preparation of logical framework logical framework approach (lfa) has been started to use by united states agency for international development (usaid) to develop strategic and institutional projects in the s. today, while a large number of project supporting organizations are distributing grant aids, they make the logical framework approach obligatory. lfa is a planning and implementation tool for project planners and practitioners based on the analysis results, in which the project objectives are exhibited within a certain logic and systematically (jackson, ; bilen & kabukçuoğlu, ). . -describing stakeholders/analyzing sharing of the project idea with internal and external stakeholders who are going to be affected by the project, and getting the opinions about the project idea has been carried out. at this stage, it is confirmed that the project idea has been approved by the majority of internal and external stakeholders and then coming to the phase of analyzing the problem. . -analyzing problem at this stage, many problem-solving methods have been used, and lastly, brainstorming has been utilized. the brainstorm was first applied by alex osborn in , and in it was included in the literature as an effective method of creative thinking (pfeffer, ; osborn, ). this method has become the most beneficial method for the project team in determining the possible problems related to the project, detecting causes that may lead to a problem (cause and effect analysis), determining which data will be collected about a problem and determining solution offers to remove a problem. the project team at this stage; long period exchanged ideas with music therapy associations, dance and motion therapy specialists, oncological doctors and nurses, psychologists, animal therapies experts and project consultancy. their counseling evaluate as a guide. these initiatives are made in a very similar way to the table below. uluslararası sosyal araştırmalar dergisi cilt: sayı: the journal of international social research volume: issue: - - . brain storming map table : http://digitalmindmap.blogspot.com.tr/ / /brainstorming-using-mind-maps.html . -target analysis long-term and short-term goals were established, vehicle-objective relationships were put forward, and possible outcomes were considered. strengths and weaknesses of project proposer and stakeholder institutions were revealed by swot analysis method, then the possibility of applying and maintaining the project was discussed. at this stage, researchers on institutions that can provide funding have been initiated simultaneously. establishing a rational link between the targets by prepared a logical framework matrix, the introduction of measurable indicators for the targets, and the definitions of the source-cost have been completed. the delegation of activities such as activity planning, meetings covered in the project, interviews, preparation of written and visual materials, human resources and budget management to the partners have been made and, these activities have been approved by each partner. . -budget main items to be used during the project have been identified, and a budget plan including probable expenses, unforeseen expenses as well as economic measures that will be taken in case the project is terminated due to political or other undesirable circumstances has been put forward. an estimated budget was created when the project was being prepared. this preliminary budget was prepared considering the economic classification of the countries. this process was evaluated by quality experts. after that, the working stages were defined one by one (analysis of regulations and laws, analysis of preliminary information, preliminary reports, overseas meetings, product creation, etc.). the real budget was created and implemented. internal monitoring and evaluation were carried out at each step of the applications. interim reports were generated. at the end of the project, both the external evaluations and the outcome reports were prepared in the ex post period. workflow can be seen in the table below. . eu programme and projects cycle management methodology table :https://ec.europa.eu/europeaid/programme-and-projects-cycle-management-methodology_en uluslararası sosyal araştırmalar dergisi cilt: sayı: the journal of international social research volume: issue: - - . -submission to financial support institutions the project was presented to education, audiovisual and culture executive agency by european commission in february as a transfer of innovation project with the scope of the program named "a lifelong learning: leonardo da vinci grundtvig and dissemination". . -accept and application the study was deemed suitable for support with the project number of -llp- - - -it- leonardo-lmp project in november . the project work was carried out according to work-sharing in pursuance of previously prepared work packages, which each organization declared to contribute with respect to its own specialty area. the organizations participating in the project are: italy: fondazione dell'ospedale salesi onlus, azienda ospedaliero universitaria ospedali riuniti umberto i, italian professional association of music therapy, turkey: yildirim beyazit university lithuanian: latvia music therapy association (lmta) poland: faculty of pedagogy and psychology, the university of bialystock england: coleg llandrillo cymru musa project has project partners from different countries. these partners are institutions, which are interested in vocational education and training, can employ interns and workers. because of that, they are competent groups that are aware of the obstacles and problems in the field of vocational education and training in addition to the demands and needs of the labor market and the health sector. specialist profile of participant organizations related to the project: this consists of music therapists, dance therapists, pet therapists, specialists from other therapeutic areas, pedagogues, project specialists, project quality auditors, medical doctors, pediatricians, social workers, nurses, political party representatives, and non-governmental organizations. contributions and suggestions from each profession were recorded by the rapporteurs and then evaluated by the working groups. in the lifecycle of the project, communication is generally done by phone, internet resources. at the project, the skype meeting was held when there is a need and an international project evaluation meeting was held five times in ancona, ankara, bialystock, llandrillo, and ancona respectively. at the management level, musa project has been realized according to the main overall project plan with a list in chronological order of all project activities on management, product development, dissemination, and evaluation level. the project plan will serve to plan and to steer the project processes as well as to control and monitor them. all partners had close contacts during all project phases, mainly via email and skype; however, most relevant were the transnational project meetings held over the overall duration of the project. a special instrument for communication and information to the public has been recognized by project website musa containing all project developments, events, products, and outcomes. at product level musa project has been accomplished through a short state of the art survey, followed by an in-depth data collection, evaluation and analyze phase, in which national vet/higher education concepts has been collected, described and compared with each other. this research work followed scientific quality standards and frameworks as well ecvet and eu policies/instruments concerning the recognition of competences and diplomas. an external company specialized on the development of e-portal, has been subcontracted so that portal has been developed on highest quality standards in terms of design, development, pilot implementation, final revision and back office assistance. a special promotion for the musa portal has been developed by all partners so this sustainable implementation of the portal had the right from the beginning. final green paper has been developed by all partners having highly competent in european educational and labor market policy and strategic considerations concerning this issue. at evaluation level fondazione salesi developed an own quality management handbook covering all evaluation activities planned and realized: • achievement of a "snap-shot" analyses of the project every months assuring that the project was on track according to qualitative and quantitative indicators of the proposal; • production of full content, dissemination and financial report every months; uluslararası sosyal araştırmalar dergisi cilt: sayı: the journal of international social research volume: issue: - - • evaluation report about each meeting ( times) where the partners delivered feedback concerning the operational, social, communication and cooperation issues of the project; additionally, an external evaluator has been subcontracted by the fondazione salesi with the aim to monitor the project every months stating observations and evaluation outcomes in two reports. in particular, musa project has been implemented through different work packages, the first four tailored and focused on project core theme and the last three transversals finalized to assure a high level of performances in project realization. each work package – above listed, had objectives, activities to do, expected result and deliverables: • development of recognition map of the creative and performing arts professions in healthcare in europe • development of the musa: online-portal for vet promotion and mutual recognition of music therapy professional profiles in europe • promotion and testing of musa portal • sustainable exploitation and implementation of musa portal • project management and sustainability • dissemination • quality management for musa project monitoring and reporting high worth has been assured by the above table containing, per work packages, all output unit with their description. at the beginning of the project the table were completed with planning issues (date, nature, …) whereas at the end of musa project the same table has been confirmed with "effective information" as shown in the table below. . musa project summary table workpackage deliverable title date (planned/realized) nature dissemination level language versions expected results/ impact d . state of the art report / draft / final r pu english very useful to provide a well defined picture of the different co therapies in europe. d . project meeting i / e pp english participants d . data collection for recognition map of the creative and performing arts professions in healthcare in europe / draft / final o (format) pu english very useful to provide a common methodology for investigation on co therapies d . report on the therapeutic effectiveness of those activities complementary to clinical care assistance originated by creative and performing arts / draft / final r pu english very useful to provide effectiveness of co-therapies wp development of recognition map of the creative and performing arts professions in healthcare in europe d . recognition map of the creative and performing arts professions in healthcare in europe (draft version) / draft completed by all partners / final (revised) s pu english very useful for the finalisation of a common competencies framework about co therapies in europe d . project meeting ii / e pp english / participants d . recognition map of creative and performing arts professions in healthcare in europe (final version) / draft / final s pu english very useful for the design of a tailored architecture of a web site focussed on co therapies wp development of the musa : on- line portal for vet promotion and mutual recognition of music therapy professional profiles in europe d . focus on music therapist professional profile / s pu english very useful to better define the characteristics of the music therapist and facilitate the comparison of the same profile in europe. uluslararası sosyal araştırmalar dergisi cilt: sayı: the journal of international social research volume: issue: - - d . server for musa on line portal / s pu english very useful for whole project and its dissemination d . the musa on line portal (beta version) / d pu english portal has a great potential for future use d . project meeting iii / e pp english participants d . musa portal promotion strategy / draft only in ita / final in eng s pp english a common strategy assured additional efficacy in portal promotion d . promotion/exploitation of musa portal / s pp english italian polish turkish different languages for static part of the portal has been a key for a wider stakeholder involvement d . evaluation of musa portal / s pu english following the process pdca (plan, do, check and act) feedbacks returned essential info for portal revision wp promotion and testing of musa portal d . the musa portal (final version) / d pu english italian polish turkish as above stated different languages for static part of the portal has been a key for a wider stakeholder involvement d . project meeting iv / e pp english participants d . musa green paper / s pu english italian polish turkish a “crispy” document for create awareness but also for trigger the desirable evolution of those profiles close to co- therapies d . intellectual property rights ipr and commercialization concept / o co english italian polish turkish the prevention of difficulties in future use of musa outputs has been organised through ipr d . sustainable implementation of musa portal on free market / s pu english italian polish turkish high are expectation for future use of the portal wp sustainable exploitation and implementation of musa portal d . project meeting v / e pp english participants d . partner contracts / o (contracts) co english among partnership d . progress report / r pu english for transparent management among partnership wp project management and sustainability d . final report / r pu english according to project procedure d . project website / s pu english very useful for project dissemination d . e.n.t.e.r. registration and dissemination / o pu english very useful for project dissemination among enter community wp dissemination d . musa email pool / o co english italian polish turkish very useful for creation of a tailored mailing list for project dissemination in europe ( email uluslararası sosyal araştırmalar dergisi cilt: sayı: the journal of international social research volume: issue: - - addresses) d . musa newsletter / / / o pu english easy to use, reaching directly several stakeholder d . musa poster/flyer / o pu english italian latvian very useful for project dissemination in different languages d . professional dissemination/promotion articles (e.g. at « focus europe ») from / to / o pu italian very useful for project dissemination among experts d . national promotion tours from / to / o pu english italian polish turkish latvian very useful for project and musa portal promotion in europe. d . dissemination/awareness conference / e pu english italian large impact on local community, large consensus about co- therapies, large involvement of international guests d . quality management handbook / draft / final s pu english peer method for better results d . snap shot analyses i- viii from / to / o (snap-shot of the project’s development) pu english very useful to organize the work in the course of the time. d . half year reports i-iv / / / / r co english for higher transparency among partnership d . peer group evaluation report i-v shortly after each project meeting r pu english very useful to pass critical situations and share processes wp quality management d . external evaluation report / / / r pu english very useful for higher impact among professionals table : project summary table nature codes: r – report s - service/product d - demonstrator/prototype e - event o – other (e.g. methods, experiences, policy lessons, european cooperation, etc) dissemination level codes: pu = public pp = restricted to other programme participants (including commission services and project reviewers). co = confidential, only for members of the consortium (including agency and commission services and project reviewers). conclusion at the end of this study, the following outputs were obtained, both in online and in print. from these outputs, art/creative art therapists who want to evaluate their skills can benefit. more importantly, patients and medical institutions that need art therapies will also benefit. the results of this project work are as follows: musa project identification map; online art therapy status report; information report on the recognition of the creative and performance arts professionals in healthcare field; information report focused on professional profile of music therapist; online musa portal development strategy booklet; musaproject .eu web site; musa poster, brochures, and documents; the international co-therapies conference; and the "green paper" for policymakers prepared to be presented to the european union head office. projects that concern public health around the world are supported by many financiers. at the end of a projects prepared according to the technical requirements of financial institutions, successful outputs are obtained. in some project activities, the intended target may not be reached at the maximum level. half of the targeted goal can be achieved, and sometimes very unexpectedly, very different and valuable results can be achieved. sometimes knowledge accumulates for projects that can be done later. each result should be uluslararası sosyal araştırmalar dergisi cilt: sayı: the journal of international social research volume: issue: - - expressed logically to the financier, and the widespread impact of the results should be explained. effective projects need to be designed in all areas of health in order to both improve health and access to the most convenient service in the easiest way. the planning of projects by multidisciplinary groups consisting of health professionals and project developers is crucial for projects' success and projects' supportability by the financiers. healthcare professionals need to be entrepreneurial and courageous to develop projects intended to solve problems in the area. musa and similar projects are developable pilot projects having the feature of prototype project. thanks: we would like to thank zeynep suata and bekir soyer helpful in designing the article and all the academicians and health professionals who have been involved in this project preparation and execution process. referencess akhan, latife utaş ( ). psikopatolojik sanat ve psikiyatrik tedavide sanatın kullanılışı. journal of higher education & science/yüksekögretim ve bilim dergisi, s. , s. - . case caroline, dalley tessa ( ). the handbook of art therapy. routledge. malchiodi, cathy a ( ). expressive therapies: history, theory, and practice. expressive therapies. in. c.a. malchiodi (ed.), expressive therapies (pp. - ). newyork: guilford press. filiz, Şahin ( ) sanat terapisinin felsefi boyutları. mediterranean journal of humanities mjh.akdeniz.edu.tr vi/ , - siegel, bernie s ( ). peace, love & healing: the bodymind & the path to self-healing: an exploration. caedmon. silver, rawler ( ). art as language: access to thoughts and feelings through stimulus drawings. 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( ). approaches to art therapy: theory and technique. routledge. sayar, Özge Özgür ( ). "kentli ve sağlıklı olmaya sanatsal bir çözüm: sanat yoluyla insana yardım: sanat terapisi". kent ve sağlık sempozyumu haziran bursa bildiri Özetleri kitabı - sözel bildirileri s. , ss. - . national coalition of creative arts therapies associations fact sheet on creative arts therapies. available at: http://www.nccata.org/aboutnccata national research council (us) committee on health impact assessment. ( ). why we need health-informed policies and decision-making. https://www.ncbi.nlm.nih.gov/books/nbk / tekindağ, faruk cengiz ( ). proje döngüsü yönetimi ve mantıksal Çerçeve yaklaşımı. sivil toplum geliştirme programı, yerel sivil girişimler projesi. ankara. http://www. orkoop. org. tr/uploads/files/proje_yonetimi_kitabi. pdf. erişim tarihi: nisan jackson, b ( ). designing projects and project evaluations using the logical framework approach. ucn monitoring and evaluation inatiative. https://www.researchgate.net/profile/william_jackson /publication/ _designing_projects_and_project_evaluations_usin g_the_logical_framework_approach/links/ e ae a bd /designing-projects-and-project-evaluations-using-the- logical-framework-approach.pdf. erişim tarihi: nisan bilen gülhan, kabukçuoğlu m. serdar ( ). proje süreci yönetimi ve mantıksal çerçeve matrisi hazırlama ilkeleri. bilgi Üniversitesi yayınları. pfeffer, jeffrey ( ). organization theory and structural perspectives on management. journal of management, ( ), - . http://home.snu.edu/~jsmith/library/body/v .pdf. erişim tarihi: nisan osborn, alex ( ). applied imagination: principles and procedures of creative problem-solving ( rd. rev. ed.). new york: charles scribner’s. [orig. ed. .] royal academy of medicine in ireland irish journal of medical science igs nd annual and scientific meeting, - october , radisson blu hotel, galway science for healthy & active ageing meeting programme & abstracts radisson blu hotel, galway th, th & th october irish journal of medical science volume supplement doi . /s - - - irish gerontological society in partnership with nui galway and west/north west hospitals group nd annual and scientific meeting science for healthy & active ageing radisson blu hotel, galway th– th october national executive committee annual scientific committee (conference organising committee) prof. j. bernard walsh (president) prof. j. bernard walsh (president) ms. mo flynn (hon secretary) ms. mo flynn (hon secretary) dr. rose galvin (hon treasurer) dr. rose galvin (hon treasurer) ms. mary j. foley prof. eamon mulkerrin (local lead) ms. joanna mchugh ms. ciara breen ms. elaine o’connor dr. adeline cooney dr. diarmuid o’shea ms. ger keenan ms. clare o’sullivan ms. elaine o’connor prof. thomas scharf prof. martin o’donnell mr. robin webster prof. thomas scharf s ir j med sci ( ) (suppl ):s –s disclosure statement supported by unrestricted educational grant from: a. menarini pharmaceuticals ireland ltd amgen astellas pharma co boehringer daiichi sankyo ireland ltd glaxosmithkline lilly lundbeck ireland ltd msd orion pharma ireland ltd pfizer healthcare ireland ltd sanofi servier laboratories (ireland) ltd yakult open access this article is distributed under the terms of the creative commons attribution license which permits any use, distribution, and reproduction in any medium, provided the original author(s) and the source are credited. ir j med sci ( ) (suppl ):s –s s céad mı́le fáilte it is with great pleasure that i welcome you on behalf of the scientific committee to the nd annual scientific meeting of the irish gerontological society. this year’s event is being jointly hosted with national university of ireland galway and west/northwest hospital group. the theme this year is ‘‘healthy and active ageing’’ and we are delighted to present an extensive programme that highlights many of the innovations, new thinking and research across all the pillars of gerontology. as always, the range and depth of the submissions received was impressive, with increasing numbers from the biological and behavioural/social sciences. there are oral presentations over the days, along with the posters to be viewed. this year’s programme provides a platform for a range of new and exciting studies to be shared. these will be presented during the sessions which cover: active and healthy ageing in the community, stroke & rehabilitation, hips & bones & falls, rehabilitation & frailty, policy and demography, new approaches in long term care, dementia, cognition & ageing, acute hospital care and caring in our society. we are delighted that the willie bermingham memorial lecture will be delivered by professor eamon o’shea, personal professor in economics at the national university of ireland galway and research professor at the irish centre for social gerontology. the lecture is titled ‘‘psy- chosocial interventions for people with dementia’’. our four keynote speakers this year will be professor marion mcmurdo speaking about ‘‘the quest for the holy grail of exercise’’, prof. gearóid ó laighin on ‘‘designing connected health systems for older people’’, and dr. shaun o’keeffe on ‘‘cant and kant: capacity and consent don’t matter that much’’. these all promise to be diverse and thought-provoking talks. my thanks to the organising committee in nuig/west northwest hospital group, to miriam ahern and lucette murray and to the igs executive committee for their considerable work in bringing this meeting together. we all hope you have a wonderful time with lots of networking, knowledge sharing and craic! mo mo flynn, honorary secretary, on behalf of the scientific committee s ir j med sci ( ) (suppl ):s –s igs nd annual and scientific meeting science for healthy & active ageing thursday th october . – . sponsored symposium venue: radisson blu hotel, marina’s restaurant private section parkinson’s disease in the older person mr. paddy browne, clinical nurse specialist, university college hospital, galway rehabilitation of parkinson’s disease in the older patient using lsvt big mr. paul diamond, occupational therapist, the royal hospital, donnybrook, dublin friday th october from . registration . – . sponsored symposium venue: radisson blu hotel, marina’s restaurant private section update in the management of copd, incorporating advances in medication and new treatment options dr. anthony o’regan, consultant in respiratory & internal medicine, university college hospital, galway & national university of ireland, galway . – . welcome address: professor j. bernard walsh, president, irish gerontological society, clinical professor, trinity college and st james’s hospital, dublin (inis mór , with live av feed to inis mór ) session inis mór co-chairs: dr. shaun o’keeffe, consultant geriatrician, university hospital galway/national university of ireland, galway dr. gerry o’mara, consultant geriatrician, roscommon hospital inis mór co-chairs: mo flynn, chief executive officer, our lady’s hospice and care services elaine o’connor, senior occupational therapist, connolly hospital, dublin . – . stroke & rehabilitation (inis mór ) o acute post-stroke blood pressure relative to pre-morbid levels in intracerebral haemorrhage versus major ischaemic stroke: population-based study o high prevalence of atrial fibrillation in acute stroke in a rural population o the management of atrial fibrillation and the use of oral anticoagulation for stroke prevention in long-term care o an investigation of the relationship between orthostatic blood pressure recovery patterns and visual function o stroke awareness before, during and after the irish national stroke awareness ‘‘fast’’ campaign o the month journey of thrombolysis in a university hospital o stroke thrombolysis in older adults attending a university hospital: audit of results between – . has the f.a.s.t campaign improved delivery in clinical practice? policy & demography (inis mór ) o the changing physical health of the over- s ( – ): findings from the irish longitudinal study on ageing o mapping health services to meet the needs of an ageing community: the local asset mapping project (lamp) o constructing home over the life course: toward a model of at-oneness o socioeconomic deprivation and risk of age-related cognitive dysfunction in older irish adults o irish national dementia educational needs analysis o mapping an integrated dementia care pathway o older prisoners in ireland: policy implications of a growing cohort ir j med sci ( ) (suppl ):s –s s . – . tea/coffee, poster viewing, marking and exhibition . - . keynote update: designing connected health systems for older people professor gearóid ó laighin, department of electronic engineering, principal investigator, national centre for biomedical engineering science, national university of ireland, galway (inis mór , with live av feed to inis mór ) session inis mór co-chairs: dr. tom lee, consultant geriatrician, mayo general hospital pauline burke, occupational therapist manager, galway university hospitals inis mór co-chairs: dr. rose galvin, programme leader hrb centre for primary care research, department of general practice & hrb centre for primary care research, royal college of surgeons in ireland dr. tom o’malley, consultant geriatrician, mayo general hospital . – . rehabilitation & frailty (inis mór ) o a hard pill to swallow? assessment of swallow function following an acute stroke o physical and psychosocial adjustment post-stroke o facilitators and barriers of getting back to active living post-stroke: results of a national survey o frailty and disability across the north and south of ireland: a data harmonisation study o the impact of frailty on post-acute rehabilitation outcomes in older adults o frailty and its association with rehabilitation outcomes: a prospective cohort study of a post-acute frail older population o prediction of fracture leading to hospital admission in community-dwelling older adults healthy older people in the community (inis mór ) o an exploratory study of club-based sports participation by older people in ireland, australia and japan o ‘‘words open windows’’: older women’s experiences of adult literacy services o exploring perceptions of ageing and health amongst mid-life women in connemara o attitudes of first year medical students to ageing and to older people o food enjoyment is associated with nutritional status among irish older adults living alone o risk instrument for screening in the community (risc): predicting adverse outcomes in older adults o do we tell gps what they need to know? a quality assessment review of gp correspondence from a medicine for the elderly outpatient clinic . – . lunch, poster viewing, marking and exhibition . – . igs annual general meeting: inis mór . – . willie bermingham lecture: psychosocial interventions for people with dementia professor eamon o’shea, personal professor in economics, research professor at the irish centre for social gerontology, national university of ireland, galway (inis mór , with live av feed to inis mór ) s ir j med sci ( ) (suppl ):s –s session inis mór co-chairs: dr. jose miranda, consultant geriatrician, letterkenny general hospital dr. ken mulpeter, consultant geriatrician, letterkenny general hospital inis mór co-chairs: dr. frances horgan, senior lecturer in physiotherapy, royal college of surgeons in ireland mary j. foley, advanced nurse practitioner, rehabilitation of the older adult, st. finbarr’s hospital, cork . – . hips & bones & falls (inis mór ) o the irish hip fracture database: results from the preliminary report o human factors & affinity: national falls prevention and bone health project o alert chart-improving communication within the mdt & reducing risk of falls o resource utilisation in older patients presenting with falls to the emergency room o is low skeletal muscle mass synonymous with sarcopenia? new approaches in long-term care (inis mór ) o making it better or worse? organisational influences on person-centred care o using ‘‘communication ramps’’ to enable participation in a survey and increase response rate o dysphagia and pneumonia in nursing home residents: which side are you on? o multidisciplinary team (mdt) approach in healing a grade four pressure ulcer in an octogenarian patient with end stage dementia o the use of adjunct therapies for chronic wound management in older adults in a teaching hospital . – . tea/coffee, poster viewing, exhibition . – . keynote update: the quest for the holy grail of exercise professor marion mcmurdo, head of ageing & health, university of dundee (inis mór , with live av feed to inis mór ) . irish society of physicians in geriatric medicine (ispgm) meeting, marina’s restaurant private section . igs gala dinner at radisson blu hotel, inis mór suite saturday th october session inis mór co-chairs: dr. michael o’connor, consultant geriatrician, cork university hospital ciara breen, senior occupational therapist & early supported discharge co-ordinator, university college hospital, galway inis mór co-chairs: professor tom scharf, director, irish centre for social gerontology, national university of ireland, galway professor martin o’donnell, professor of translational medicine, national university of ireland, galway, consultant geriatrician ir j med sci ( ) (suppl ):s –s s . – . dementia (inis mór ) o irish national audit of dementia care in acute hospitals o changing patient demographics and diagnostic profiles attending a national memory clinic: a retrospective review o audit of early clinical diagnosis of dementia incorporating fdgpetct scanning o opinions towards a consensus on use of medications in advanced dementia o acute dementia care: a review of hospital activity attributable to the care of patients with dementia o dementia’s influence on hospital length of stay of older people may be overstated and mainly relates to delays in discharge to long-term care o end of life dementia care in acute hospitals cognition & ageing (inis mór ) o environmental risk factors for cognitive ageing: geographical location, social engagement and lifestyle o negative perceptions of ageing predict longitudinal decline in executive function o cognitive screening tests need to be adjusted for age and education in patients presenting with symptomatic memory loss o delayed recovery of blood pressure after orthostasis in individuals with supine hypertension is associated with poorer global cognition at -year follow-up in a sample of community dwelling older adults o b-vitamin status in relation to cognitive decline over years in healthy older adults o is there a cognitive prodrome to delirium? o baseline predictors of delirium in medical inpatients . – . keynote update: cant and kant: capacity and consent don’t matter that much dr. shaun o’keeffe, consultant physician and geriatrician, university hospital galway/national university of ireland, galway (inis mór , with live av feed to inis mór ) . – . coffee/tea, refreshments, poster viewing and exhibition session inis mór co-chairs: professor eamon mulkerrin, consultant physician & geriatrician, national university of ireland, galway professor j. bernard walsh, president, irish gerontological society, clinical professor, trinity college and st james’s hospital, dublin inis mór co-chairs: clare o’sullivan, director of postgraduate education for the school of clinical therapies, department of occupational therapy, university college cork dr. áine nı́ léime, post-doctoral researcher, irish centre for social gerontology, national university of ireland, galway s ir j med sci ( ) (suppl ):s –s . – . acute hospital care (inis mór ) o the impact of the national clinical programme for older people on older re-attenders to the emergency department o characteristics and outcomes of older patients attending an acute medical assessment unit o symptom presentation in myocardial infarction (mi) patients: a regression model exploring if it is different in the aged o the utility of fdg pet brain in the diagnosis of neurodegenerative conditions o an audit of elderly hospitalised patients’ attitudes and understanding of pain o occult complexities in geriatric inpatient consultations o smoking prevalence in an elderly inpatient population caring in our society (inis mór ) o the experiences of family caregiving: making sense of dementia from both cared for and caregiver perspectives o the impact of caring for spouses on depression and health behaviours in over s in ireland, the irish longitudinal study on ageing o carer burden and potentially harmful behaviours engaged in by carers of older people: results of a national survey o survey of healthcare workers suggests unmet palliative care needs in parkinson’s disease o factors associated with place of death among older irish adults: results from the irish longitudinal study on ageing o the influence of dementia on one-year mortality following hospital admission, and place and cause of death o dying to talk: initiating end of life care discussions with people who have dementia . – . awards and close of conference (inis mór ) ir j med sci ( ) (suppl ):s –s s platform presentations o acute post-stroke blood pressure relative to pre-morbid levels in intracerebral haemorrhage versus major ischaemic stroke: population-based study marie therese cooney , urs fischer , linda bull , louise silver , john chalmers , craig anderson , ziyah mehta , peter rothwell stroke prevention research unit, nuffield department clinical neurosciences, university of oxford, oxford, uk, the george institute for global health, university of sydney, sydney, australia o high prevalence of atrial fibrillation in acute stroke in a rural population ikwain marion, padraic mcdonagh, niamh murtagh, tom lee, tom o’malley mayo general hospital, castlebar, ireland o the management of atrial fibrillation and the use of oral anticoagulation for stroke prevention in long-term care rónán o’caoimh , estera igras , abdul ramesh , ber power , richard liston gerontology and rehabilitation, st finbarr’s hospital, cork city, ireland, kerry general hospital, tralee, co kerry, ireland, st. columbanus home & killarney community hospital, killarney, co kerry, ireland o an investigation of the relationship between orthostatic blood pressure recovery patterns and visual function bláithı́n nı́ bhuachalla , christine mcgarrigle , stephen beatty , rose anne kenny discipline of medical gerontology, trinity college dublin, dublin, ireland, the irish longitudinal study on ageing, trinity college dublin, dublin, ireland, macular pigment research group, vision research centre, waterford institute of technology, waterford, ireland o stroke awareness before, during and after the irish national stroke awareness ‘‘fast’’ campaign ruth dwyer, breffni drumm, robert briggs, des o’neill, tara coughlan, ronan collins amnch, tallaght, dublin , ireland o the month journey of thrombolysis in a university hospital nora cunningham, fiona o’sullivan, peter boers, catherine peters, declan lyons, john mcmanus, elijah chaila university hospital, limerick, ireland o stroke thrombolysis in older adults attending a university hospital: audit of results between – . has the f.a.s.t campaign improved delivery in clinical practice? rónán o’caoimh, amanda h lavan, glen arrigan, mary buckley, norma harnedy, paidrigin o’sullivan, denis o’mahony, mike o’connor cork university hospital, cork city, ireland o the changing physical health of the over s ( – ): findings from the irish longitudinal study on ageing ciaran finucane , joanne feeney , hugh nolan , claire o’regan , hilary cronin , rose anne kenny tilda, tcd, dublin, ireland, st. james’s hospital, dublin, ireland o mapping health services to meet the needs of an ageing community: the local asset mapping project (lamp) david robinson , gerard boyle , jennifer feighan , chris soraghan , luis dominguez-villoria , darren clarke , jan rigby , stacey lindau , rose anne kenny st. james’s hospital, dublin, ireland, national university of ireland, maynooth, meath, ireland, university of chicago, chicago, usa o constructing home over the life course: toward a model of at-oneness kieran walsh , thomas scharf , graham rowles irish centre for social gerontology, nui galway, galway, ireland, graduate center for gerontology, university of kentucky, lexington, ky, usa o socioeconomic deprivation and risk of age-related cognitive dysfunction in older irish adults leane hoey , adrian mccann , helene mcnulty , anne m molloy , conal cunningham , miriam c casey , catherine f hughes , jan e rigby , adrian moore university of ulster, co. londonderry, uk, trinity college dublin, dublin, ireland, mercer’s institute for research on ageing, dublin, ireland, nui maynooth, co. kildare, ireland o irish national dementia educational needs analysis kate irving , paulina piasek , annmarie coen , sophia kilcullen , mary manning dublin city university, dublin, ireland, health service executive, dublin, ireland o mapping an integrated dementia care pathway daniel regan , patrick slevin , james fullam , sarah cosgrave , denis curtin , dermot power , diarmuid o’shea , gerardine doyle university college dublin, dublin, ireland, mater misericordiae university hospital, dublin, ireland, st. vincent’s university hospital, dublin, ireland s ir j med sci ( ) (suppl ):s –s o older prisoners in ireland: policy implications of a growing cohort gillian smith trinity college dublin, dublin, ireland o a hard pill to swallow? assessment of swallow function following an acute stroke gabriel beecham, david brennan, colm staunton, nicholas ng, vishnu pradeep, michael cotter, martin mulroy our lady of lourdes hospital, drogheda, co. louth, ireland o physical and psychosocial adjustment post-stroke irene hartigan, geraldine mccarthy, josephine hegarty, vicki livingstone school of nursing and midwifery, university college cork, cork, ireland o facilitators and barriers of getting back to active living post-stroke: results of a national survey mary walsh , rose galvin , cliona loughnane , chris macey , frances horgan royal college of surgeons in ireland, dublin, ireland, irish heart foundation, dublin, ireland o frailty and disability across the north and south of ireland: a data harmonisation study siobhan scarlett, bellinda king-kallimanis, jonathan briody, rose anne kenny, matthew o’connell the irish longitudinal study on ageing, department of medical gerontology, chemistry extension building, trinity college, dublin, ireland o the impact of frailty on post-acute rehabilitation outcomes in older adults lisa cogan, caitriona tiernan, roman romero-ortuno the royal hospital donnybrook, dublin, ireland o frailty and its association with rehabilitation outcomes: a prospective cohort study of a post-acute frail older population mary nolan , dermot power , jill long , frances horgan cappagh national orthopaedic hospital, dublin, ireland, mater misericordiae and cappagh national orthopaedic hospitals, dublin, ireland, royal college of surgeons in ireland, dublin, ireland o prediction of fracture leading to hospital admission in community dwelling older adults rosaleen lannon , avril beirne , kevin mccarroll , cathal walsh , conal cunningham , jb walsh , miriam casey bone health unit, mercer’s institute for research on ageing, st james’s hospital, dublin , ireland, mercer’s institute for research on ageing, st james’s hospital, dublin , ireland, dept of biostatistics, trinity college dublin, dublin , ireland o an exploratory study of club-based sports participation by older people in ireland, australia and japan yoshio oro trinity college dublin, dublin, ireland o ‘‘words open windows’’: older women’s experiences of adult literacy services catherine o’dare trinity college, dublin, ireland o exploring perceptions of ageing and health amongst mid-life women in connemara alison herbert national university of ireland, galway, ireland o attitudes of first year medical students to ageing and to older people simon piggott , christopher thong zi yi , elizabeth macken , ben mulholland , caitriona mckennedy , nur anis atika zainal abidin , nur farhana ahmad hourmain , aisling o’reilly , triona clerkin , aoife kilby , stephanie robinson , michelle canavan , eamon mulkerrin , martin o’donnell , first year nuig medicine nursing home special study module group national university of ireland, galway, ireland, university hospital, galway, ireland, clinical research facility, national university of ireland, galway, ireland o food enjoyment is associated with nutritional status among irish older adults living alone joanna mchugh, olga lee, niamh aspell, emma mccormack, michelle loftus, sabina brennan, brian lawlor neil program, institute of neuroscience, trinity college, dublin, ireland o risk instrument for screening in the community (risc): predicting adverse outcomes in older adults christine fitzgerald , rónán o’caoimh , elizabeth healy , elizabeth o’connell , gabrielle o’keeffe , una cronin , eileen o’herlihy , nicola cornally , roger clarnette , sarah coveney , francesc orfila , constança paúl , marina lupari , d. william molloy centre for gerontology and rehabilitation, ucc, cork, ireland, centre for public health nursing, ballincollig and bishopstown, cork, ireland, centre for public health nursing, mahon and ballintemple, cork, ireland, health service executive south, ireland, faculty of medicine, dentistry and health sciences, university of western australia, australia, idiap jordi gol, barcelona, spain, icbas, university of porto, porto, portugal, northern health & social care trust, northern ireland, uk ir j med sci ( ) (suppl ):s –s s o do we tell gps what they need to know? a quality assessment review of gp correspondence from a medicine for the elderly outpatient clinic avril m beirne, aisling byrne, david j robinson department of medicine for the elderly, st james’s hospital, dublin , ireland o the irish hip fracture database: results from the preliminary report louise brent , emer ahern , conor hurson university hospital waterford, waterford, ireland, st. luke’s hospital, kilkenny, ireland, st. vincent’s hospital, dublin, ireland o human factors & affinity: national falls prevention and bone health project irene o’byrne-maguire state claims agency, dublin, ireland o alert chart-improving communication within the mdt & reducing risk of falls eimear horan, diarmuid o’shea, catherine mcloughlin, ashling kinahan st. vincent’s university hospital, dublin, ireland o resource utilisation in older patients presenting with falls to the emergency room patricia hall , jaspreet bhangu , ciara rice , geraldine mcmahon , rose ann kenny st. james’s hospital, dublin, ireland, trinity college, dublin, ireland o is low skeletal muscle mass synonymous with sarcopenia? edric leung , fiona o’sullivan , margaret o’connor , declan lyons , catherine peters , grainne o’malley , jean saunders , eileen humphreys graduate entry medical school, university of limerick, limerick, ireland, division of ageing and therapeutics, university hospital limerick, limerick, ireland, department of sociology, university of limerick, limerick, ireland, statistical consulting unit, university of limerick, limerick, ireland o making it better or worse? organisational influences on person-centred care ann coyle , kathy murphy , eamon o’shea nuigalway, galway, ireland, health services executive, louth meath primary care services, ireland o using ‘‘communication ramps’’ to enable participation in a survey and increase response rate julie scott, olivia sinclair, marie haughey, orla boyle, martina o’connor, andrea caffrey the royal hospital donnybrook, dublin, ireland o dysphagia and pneumonia in nursing home residents: which side are you on? colette gill, jonathan o’keeffe, joseph browne, graham hughes, diarmuid o’shea, fionnuala duffy st. vincent’s university hospital, elm park, dublin , ireland o multidisciplinary team (mdt) approach in healing a grade four pressure ulcer in an octogenarian patient with end stage dementia catherine dunleavy, tomasz tomasiuk, rosamma jacob tara winthrop private clinic, dublin, ireland o the use of adjunct therapies for chronic wound management in older adults in a teaching hospital julie jordan-o’brien , stuart lee , daragh moneley , ciaran donegan tissue viability service, beaumont hospital, dublin, ireland, department of geriatric and stroke medicine, beaumont hospital, dublin, ireland, department of vascular surgery, beaumont hospital, dublin, ireland o irish national audit of dementia care in acute hospitals suzanne timmons , emma o’ shea , anna de siun , paul gallagher , sean kennelly , denise mcardle , patricia gibbons , desmond o’neill university college cork, cork, ireland, trinity college dublin, dublin, ireland, quality and patient safety directorate (audit services), ireland, ireland o changing patient demographics and diagnostic profiles attending a national memory clinic: a retrospective review avril m beirne, irene bruce, robert coen, kevin mccarroll, david j robinson, brian a lawlor, conal j cunningham mercer’s institute for research on ageing, st james’s hospital, dublin , ireland o audit of early clinical diagnosis of dementia incorporating fdgpetct scanning david middleton, emma cunningham, tom lynch, ap passmore belfast trust, belfast, uk s ir j med sci ( ) (suppl ):s –s o opinions towards a consensus on use of medications in advanced dementia rónán o’caoimh , nicola cornally , eileen o’herlihy , yang gao , una cronin , sarah coveney , roger clarnette , ciara mcglade , william molloy centre for gerontology and rehabilitation, st finbarr’s hospital, cork city, ireland, fremantle hospital, fremantle, australia, mallow general hospital, mallow, co cork, ireland o acute dementia care: a review of hospital activity attributable to the care of patients with dementia r coary, r briggs, s kennelly department of age related health care, tallaght, ireland o dementia’s influence on hospital length of stay of older people may be overstated and mainly relates to delays in discharge to long-term care catherine o’sullivan , aoife barrett , vanessa browne , edmund manning , david william molloy , niamh o’regan , suzanne cahill , john linehan , kathleen o’sullivan , david meagher , suzanne timmons mercy university hospital, cork, ireland, centre for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland, dementia services and information and development centre, st. james’s hospital, dublin, ireland, older person services, hse, dublin, ireland, school of mathematical sciences, university college cork, cork, ireland, department of psychiatry, university of limerick, limerick, ireland o end of life dementia care in acute hospitals emma o’shea , sean kennelly , suzanne timmons , anna de siun , paul gallagher , desmond o’neill university college cork, cork, ireland, trinity college dublin, dublin, ireland o environmental risk factors for cognitive ageing: geographical location, social engagement and lifestyle marica cassarino , vincent o’sullivan , rose anne kenny , annalisa setti university college cork, cork, ireland, trinity college dublin, dublin, ireland o negative perceptions of ageing predict longitudinal decline in executive function deirdre robertson, bellinda king-kallimanis, rose anne kenny trinity college dublin, dublin, ireland o cognitive screening tests need to be adjusted for age and education in patients presenting with symptomatic memory loss rónán o’caoimh , yang gao , paul gallagher , joseph eustace , william molloy centre for gerontology and rehabilitation, st finbarr’s hospital, cork city, ireland, department of geriatric medicine, cork university hospital, cork city, ireland, health research board clinical research facility, mercy university hospital, cork city, ireland o delayed recovery of blood pressure after orthostasis in individuals with supine hypertension is associated with poorer global cognition at -year follow-up in a sample of community dwelling older adults joanne feeney, cara dooley, rose anne kenny trinity college, dublin, ireland o b-vitamin status in relation to cognitive decline over years in healthy older adults catherine f hughes , helene mcnulty , mary ward , leane hoey , kristina pentieva , anne m molloy , fergal tracey northern ireland centre for food and health, university of ulster, coleraine, northern ireland, uk, institute of molecular medicine, trinity college dublin, dublin , ireland, causeway hospital, coleraine, northern ireland, uk o is there a cognitive prodrome to delirium? niamh o’regan , james fitzgerald , katrina maughan , dimitrios adamis , david william molloy , david meagher , suzanne timmons centre for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland, graduate entry medical school, university of limerick, limerick, ireland, school of applied psychology, university college cork, cork, ireland, sligo mental health services, sligo, ireland o baseline predictors of delirium in medical inpatients niamh o’regan , james fitzgerald , dimitrios adamis , david william molloy , david meagher , suzanne timmons centre for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland, graduate entry medical school, university of limerick, limerick, ireland, sligo mental health services, sligo, ireland o the impact of the national clinical programme for older people on older re-attenders to the emergency department colm byrne, mich vartulli, toddy daly, lorraine kyne, joseph duggan, chie wei fan mater misericordiae university hospital, dublin, ireland o characteristics and outcomes of older patients attending an acute medical assessment unit aoife fallon, jess armstrong, tara coughlan, ronan collins, des o’neill, sean p kennelly department of age related healthcare, tallaght hospital, dublin , ireland ir j med sci ( ) (suppl ):s –s s o symptom presentation in myocardial infarction (mi) patients: a regression model exploring if it is different in the aged gabrielle mckee , sharon o’donnell , mary mooney , frances o’brien , debra moser trinity college dublin, dublin, ireland, university of kentucky, lexington, usa o the utility of fdg pet brain in the diagnosis of neurodegenerative conditions avril m beirne , niall sheehy , ba lawlor cunningham , kevin mccarroll mercer’s institute for research on ageing, st james’s hospital, dublin , ireland, department of radiology, st james’s hospital, dublin , ireland o an audit of elderly hospitalised patients’ attitudes and understanding of pain fiona roberts, aoiffe lemasney, padraig bambrick, riona mulcahy, george pope waterford regional hospital, waterford, ireland o occult complexities in geriatric inpatient consultations joseph browne, rory durcan, nicholas power, morgan crowe, jj barry, graham hughes, diarmuid o’shea st vincent’s university hospital, dublin , ireland o smoking prevalence in an elderly inpatient population breda cushen, kristina lukjanova, emer ahern st. luke’s general hospital, kilkenny, ireland o the experiences of family caregiving: making sense of dementia from both cared for and caregiver perspectives mary galvin university college cork, cork, ireland o the impact of caring for spouses on depression and health behaviours in over s in ireland, the irish longitudinal study on ageing christine a mcgarrigle, cathal mccrory, rose anne kenny trinity college dublin, dublin, ireland o carer burden and potentially harmful behaviours engaged in by carers of older people: results of a national survey attracta lafferty , gerard fealy , carmel downes , jonathan drennan university college dublin, dublin, ireland, university of southampton, southampton, uk o survey of healthcare workers suggests unmet palliative care needs in parkinson’s disease siobhan fox , elizabeth gannon , alison cashell , w. george kernohan , marie lynch , ciara mcglade , tony o’brien , sean o’sullivan , catherine sweeney , suzanne timmons center for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland, parkinson’s association of ireland, dublin, ireland, institute of nursing and health research, university of ulster, co. antrim, uk, irish hospice foundation, dublin, ireland, cork university hospital, cork, ireland, marymount university hospital and hospice, co. cork, ireland o factors associated with place of death among older irish adults: results from the irish longitudinal study on ageing sheena mchugh , aoife mcnamara , patricia kearney , rose-anne kenny , charles normand university college cork, cork, ireland, trinity college dublin, dublin, ireland o the influence of dementia on one-year mortality following hospital admission, and place and cause of death edmund manning , suzanne timmons , aoife barrett , vanessa browne , david william molloy , niamh o’regan , suzanne cahill , john linehan , kathleen o’sullivan , noel woods , david meagher , aoife ni chorcorain centre for gerontology and rehabilitation, school of medicine,ucc, cork, ireland, dementia services and information and development centre, st james’s hospital, dublin, ireland, older person services, hse, cork, ireland, school of mathematical sciences, ucc, cork, ireland, centre for social policy studies, ucc, cork, ireland, department of psychiatry, university of limerick, limerick, ireland, cork university hospital, cork, ireland o dying to talk: initiating end of life care discussions with people who have dementia carmel collins, jean barber, marie lynch, lasarina maguire, deirdre shanagher, suzanne timmons, ann quinn irish hospice foundation, dublin, ireland posters biology of ageing p a prospective study of mortality in the trinity university of ulster and department of agriculture (tuda) cohort avril m beirne , kevin mccarroll , miriam c casey , helene mcnulty , eamon laird , cathal walsh , j bernard walsh , mary ward , leane hoey , ann molloy , martin healy , jj strain , conal j cunningham s ir j med sci ( ) (suppl ):s –s mercer’s institute for research on ageing, st. james’s hospital, dublin, ireland, department of biochemistry, trinity college dublin, dublin, ireland, department of biochemistry, st. james’s hospital, dublin, ireland, university of ulster, coleraine, ireland, department of statistics, trinity college dublin, dublin, ireland p limb-shaking transient ischaemic attacks mary buckley, joe jordan, pat barry cork university hospital, cork, ireland p combining the active stand test and pattern recognition enables vasovagal syncope prediction michael carmody , hugh nolan , chie wei fan , clodagh o’dwyer , rose anne kenny , ciaran finucane tilda, tcd, dublin, ireland, tbsi, tcd, dublin, ireland, st. james’s hospital, dublin, ireland, mater hospital, dublin, ireland p a cross-sectional assessment of vascular health and orthostatic blood pressure fluctuation in older adults without vascular comorbidity john cooke , sheila carew , margaret o’connor , catherine peters , colin quinn , christine sheehy , aine costelloe , jean saunders , paul finucane , declan lyons university hospital limerick, limerick, ireland, graduate entry medical school, university of limerick, limerick, ireland, statistical consulting unit, university of limerick, limerick, ireland p is short-duration orthostatic bp decay in asymptomatic older adults associated with cerebral hypoperfusion? john cooke , sheila carew , fiona o’sullivan , colin quinn , caroline o’connor , oonagh condon , jean saunders , paul finucane , declan lyons department of medicine, division of ageing & therapeutics, university hospital limerick, limerick, ireland, graduate entry medical school, university of limerick, limerick, ireland, statistical consulting unit, university of limerick, limerick, ireland p ambulatory blood pressure variables in the older irish adult: apsi study kirstyn james, eamon dolan connolly hospital, dublin, ireland p prospective characterisation of body composition after a short term training programme using dual-energy x-ray absorpti- ometry in an active rehabilitation unit laura ann lambert, simon clifford, siobhan forman, aoife kilcoyne, stephen eustace, dermot power cappagh national orthopaedic hospital - active rehabilitation unit, finglas, dublin, ireland p single institution functional imaging in aiding diagnosis and communication in people presenting with memory problems mark murphy, lisa lavelle, diarmuid o’shea, ronan killeen, orla collins, graham hughes, kate murphy st. vincent’s university hospital, dublin, ireland p zoledronic acid for osteoporosis in an ever ageing population, who should we be treating? fiona o’sullivan , caroline ryan , navneet ramlaul , kathleen burke , margaret o’connor , catherine peters , declan lyons university hospital limerick, limerick, ireland, st camillus’ hospital, limerick, ireland health & ageing p intravenous stroke thrombolysis and antiplatelet timing (iv stat) audit anna louise alexander, enda kerr royal victoria hospital, belfast, uk p are elderly patients with complex needs accessing comprehensive geriatric assessment and mdt input in our current amu admission service? jane anketell, christopher speers royal victoria hospital, belfast, uk p assessment of falls risk within the medical admission unit christopher speers, jane anketell royal victoria hospital, belfast, uk p the role of crp in acute hip fracture surgery padraig bambrick, louise brent, john cooke, george pope, riona mulcahy university hospital waterford, waterford, ireland ir j med sci ( ) (suppl ):s –s s p think delirium, write delirium, treat delirium! an e-learning collaboration to improve detection, diagnosis and management of delirium aileen barrett , sean kennelly , aoibhinn lynch , aoife nı́ chorcoráin , niamh o’regan royal college of physicians of ireland, dublin, ireland, adelaide and meath hospital, tallaght, dublin, ireland, hse dublin north city/ north west, dublin, ireland, south lee mental health services; department of psychiatry, university college cork, cork, ireland, centre for gerontology & rehabilitation, university college cork, cork, ireland p a consecutive cohort study of short cognitive tests to screen for dementia in older people on admission to hospital: the temporal orientation score and the -item cognitive impairment test aoife barrett , vanessa browne , edmund manning , suzanne cahill , john linehan , kathleen o’sullivan , noel woods , david meagher , aoife nı́ chorcorain , niamh o’reagan , david william molloy , suzanne timmons centre for gerontology and rehabilitation, school of medicine, ucc, cork, ireland, dementia services information and development centre, st. james’s hospital, dublin, ireland, services for older people, hse south, cork, ireland, school of mathematical sciences, ucc, cork, ireland, centre for social policy studies, ucc, cork, ireland, department of psychiatry, university of limerick, limerick, ireland, cork university hospital, hse south, cork, ireland p bisphosphonate related osteonecrosis of the jaws in the osteoporotic patient anna beattie , j bernard walsh , miriam casey , kevin mccarroll , leo fa stassen dept of oral and maxillofacial surgery, dublin dental university hospital, dublin , ireland, mercer’s institute for research on ageing, st james’s hospital, dublin , ireland p the effect of a balance exercise class on activity limitations in people with parkinson’s disease anne belton , richard walsh , sinead murphy , dominick mccabe , rose galvin tallaght hospital, dublin , ireland, royal college of surgeons in ireland, dublin , ireland p fuse: falls and unexplained syncope in the elderly. the utility of implantable loop recorders jaspreet bhangu , patricia hall , ciara rice , geraldine mcmahon , peter crean , richard sutton , rose ann kenny st. james’s hospital, dublin, ireland, trinity college dublin, dublin, ireland, imperial college, london, uk p the prevalence of gait disorders and stravinsky syndrome in an age-related day hospital robert briggs, teresa quinn, siobhan quinn, des o’neill charlie o’toole day hospital, age-related health care, tallaght hospital, dublin, ireland p the effect of a national awareness campaign on knowledge of atrial fibrillation in the irish population robert briggs, ali chatharoo, ruth dwyer, breffni drumm, vivienne ralph, des o’neill, sean kennelly, tara coughlan, ronan collins stroke service, age-related health care, tallaght hospital, dublin, ireland p admission hyperglycaemia predicts outcomes in acute stroke ciaran costello, eileen fan, imelda noone, serena hatton, graham hughes, diarmuid o’shea, morgan crowe, joseph browne st vincent’s university hospital, dublin , ireland p potentially inappropriate medications in older hospitalised patients karen sheehan, diarmuid o’shea, morgan crowe, graham hughes, joseph browne st vincent’s university hospital, dublin , ireland p ageism in parkinson’s disease studies mary buckley, desmond o’neill the adelaide and meath hospital, tallaght, dublin, ireland p a review of acute orthopaedic admissions in older patients mary buckley, sarah mello, josie clare cork university hospital, cork, ireland p preliminary hip fracture outcome data in different cohorts of patients mary buckley, sarah mello, ann o’mahony, josie clare cork university hospital, cork, ireland p rehabilitation of pelvic fractures colm byrne, caitriona tiernan, roman romero-ortuno, lisa cogan royal hospital donnybrook, dublin, ireland p attitudes to importance of outcome measures in cardiovascular prevention trials michelle canavan , andrew smyth , stephanie robinson , irene gibson , eamon mulkerrin , martin o’donnell s ir j med sci ( ) (suppl ):s –s university hospital, galway, ireland, national university of ireland, galway, ireland, croi the west of ireland heart foundation, galway, ireland p audit of stroke management at a university teaching hospital lisa brandon, michelle canavan, stephanie robinson, tomas griffin, amjad khan, patricia galvin, shaun o’keeffe, martin o’donnell, eamon mulkerrin, thomas walsh university hospital, galway, ireland p access to neuroimaging in dementia: a survey of specialists aurelia ciblis , marie-louise butler , arun bokde , paul mullins , des o’neill , jonathan mcnulty university college dublin, dublin, ireland, trinity college dublin, dublin, ireland, bangor university, bangor, uk p is the mini-mental state examination on admission to an active rehabilitation unit beneficial in predicting duration of stay and discharge options? simon clifford, laura ann lambert, emma nolan, siobhan forman, dermot power cappagh national orthopaedic hospital, active rehabilitation unit, dublin, ireland p medical and surgical comorbidities on admission to an active rehabilitation unit simon clifford, laura ann lambert, joanne larkin, siobhan forman, dermot power cappagh national orthopaedic hospital, active rehabilitation unit, dublin, ireland p effect of a multifaceted intervention on potentially inappropriate prescribing in older patients in primary care: a cluster randomised controlled trial (the opti-script study) barbara clyne , susan smith , carmel hughes , fiona boland , janine cooper , tom fahey royal college of surgeons in ireland, dublin, ireland, queen’s university belfast, belfast, uk p too much, too late: polypharmacy at end-of-life sarah coveney, nicola cornally, alice coffey, ciara mcglade, william molloy, edel daly, ronan o’caoimh university college cork, cork, ireland p the benefits of a nurse-led secondary prevention clinic in a stroke service nicola cogan, ronan collins, suzanne greene tallaght hospital, dublin, ireland p neuromedical sequelae post-stroke suzanne greene, nicola cogan, robert briggs, tara coughlan, des o’neill, dominick mc cabe, sinead murphy, richard walsh, ronan collins tallaght hospital, dublin, ireland p management of older ambulatory patients with chronic heart failure: are we ‘rate aware’? warren connolly, christine mccarthy, toddy daly, dermot power, joe duggan, lorraine kyne mater misericordiae hospital, dublin, ireland p how are we doing with our zzzs? a cross-sectional study of sleep hygiene and falls risk in an acute hospital setting warren connolly, muireann clifford, erin allison, aoife fallon, frances mc carthy mater misericordiae hospital, dublin, ireland p co-prescription of laxative and opioids: a cross-sectional study christine mc carthy, warren connolly, derek hayden mater misericordiae hospital, dublin, ireland p the concurrent validity of the -item bbs p with other clinical measures of balance in the community-dwelling elderly sinéad considine, helen french royal college of surgeons in ireland, dublin, ireland p cost effectiveness of inpatient rehabilitation in brain injury patients marie therese cooney, aine carroll national rehabilitation hospital, dublin, ireland p do not attempt resuscitation (dnar) documentation: does it comply with recommendations of the national consent policy? marie therese cooney, patrick mitchell, iulia ioana, daniela stancila, shagool abdulla, crina burlacu, rachael doyle st. colmcille’s hospital, loughlinstown, dublin, ireland ir j med sci ( ) (suppl ):s –s s p troponin i is a predictor of delayed detection of atrial fibrillation in ischaemic stroke and tia frank ward, rory mcgovern, paul cotter st. luke’s hospital, kilkenny, ireland p investigation of equal responsiveness of two frailty outcome measures within a day hospital setting and useability of both measures áine curneen, bronagh conroy, declan o’hanlon st. james’s hospital, dublin , ireland p screening of osteoporosis treatment in patients presenting with fragility fractures in a geriatric active rehab unit eimear curran, simon clifford, siobhan forman, dermot power cappagh national orthopaedic hospital, fingal, ireland p assessing the anticholinergic burden in a geriatric active rehabilitation unit eimear curran, dermot power cappagh national orthopaedic hospital, finglas, ireland p the effect of the introduction of a tobacco-free hospital policy on documentation of smoking status and prescription of nicotine replacement therapy (nrt) breda cushen, kristina lukjanova, emer ahern st. luke’s general hospital, kilkenny, ireland p an investigation of factors which predict acute short-term functional outcomes in older adults following hip replacement surgery aoife daly, sandra burke, emma costello, agnes shiel national university of ireland galway, galway, ireland p post-stroke fatigue: an emerging condition. a review of the literature aisling davis st vincent’s university hospital, dublin, ireland p risk factors for falls occurring during hospital stay juliana delos reyes, suzanne noel, rachael doyle, clodagh o’dwyer st. columcille’s hospital, loughlinstown, co dublin, ireland p a study of warfarin control and potential suitability for switching to alternative oral anticoagulant agents in a geriatric day hospital setting lydia dennis , stuart lee , david williams department of geriatric and stoke medicine, beaumont hospital, dublin, ireland, royal college of surgeons, dublin, ireland p reduced gait speed in community-dwelling adults with atrial fibrillation orna donoghue , sofie jansen , cara dooley , sophia de rooij , nathalie van der velde , rose anne kenny the irish longitudinal study on ageing (tilda), trinity college dublin, dublin, ireland, academic medical center, department of internal medicine, section of geriatric medicine, amsterdam, the netherlands p do self-reported sensory deficits predict recurrent falls over years? orna donoghue , annalisa setti , cara dooley , rose anne kenny the irish longitudinal study on ageing (tilda), trinity college dublin, dublin, ireland, school of applied psychology, university college cork, cork, ireland p appropriate use of urinary catheters and documentation in the geriatric population kevin doody, elaine shanahan, carol gaffney, amin elshibly, george krakra, margaret o’connor university hospital limerick, limerick, ireland p outcomes of patients following attendance at a geriatric day hospital: one-year prospective cohort study rory durcan , diarmuid o’shea , roman romero-ortuno , morgan crowe , orla collins , john j. barry , graham hughes st. vincent’s university hospital, dublin, ireland, st. michael’s hospital, dun laoghaire, co dublin, ireland p the prevalence of anaemia in a geriatric day hospital cohort rory durcan, aishling walsh, diarmuid o’shea st vincent’s university hospital, dublin, ireland s ir j med sci ( ) (suppl ):s –s p a study of body mass index change in hospitalised geriatric patients in an active rehabilitation unit ana espinosa gonzalez, dermot power, siobhan forman, joanna larkin university college, dublin, ireland p impact of season, weekends and bank holidays on transfer of nursing home residents to emergency department chie wei fan, tracy keating, dermot power, eamonn brazil, joseph duggan mater misericordiae university hospital, dublin, ireland p impact of a cns for frail older adults on a geriatric consult service in a tertiary academic teaching hospital deborah fitzhenry, robert briggs, desmond o’neill, ronan collins, tara coughlan tallaght hospital, dublin , ireland p significant fall reduction: the effectiveness of an interdisciplinary falls group in a residential centre for people ageing with intellectual disabilities bernadette flood, john f flood, grainne bourke, marie o sullivan, geraldine delaney, cardwell muvangani, jillian connolly, margot brennan daughters of charity disability support services, dublin, ireland p the pivotal role of the assessment and treatment centre/day hospital in optimizing health, function and wellness in older adults mary j foley, mary hickey, suzanne timmons, norma harnedy, maria crowley, martina agar st. finbarr’s centre of gerontology & rehabilitation, cork, ireland p evaluation of stroke recovery post discharge from a stroke rehabilitation unit mary j. foley, paul gallagher, anita ryan, aishling doyle, maureen johnson, irene hartigan, carmel kilcommons, shiela robinson, elizabeth armstrong st. finbarr’s hospital, cork, ireland p an investigation of vitamin d status and supplementation in a predominantly elderly east galway population eilis foran, teresa donnelly university of limerick, limerick, ireland p the first months of a newly established active rehabilitation unit for the frail and elderly: a retrospective review siobhan forman, colm geraghty, joanne larkin, catherine mulvihill, mary nolan, dermot power cappagh national orthopaedic hospital, dublin, ireland p an assessment of the age adjusted charlson’s comorbidity index on deaths in an active rehabilitation unit francisca ugwu, siobhan forman, dermot power cappagh hospital, dublin, ireland p an assessment of the charlson comorbidity index on a patient population on an active rehabilitation ward siobhan forman, dermot power cappagh hospital, finglas, ireland p views and experiences of irish healthcare workers on the delivery of palliative care to people with parkinson’s disease: a qualitative analysis siobhan fox , alison cashell , w. george kernohan , marie lynch , ciara mcglade , tony o’brien , sean o’sullivan , suzanne timmons center for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland, parkinson’s association of ireland, dublin, ireland, irish hospice foundation, dublin, ireland, institute of nursing and health research, university of ulster, co. antrim, uk, marymount university hospital and hospice, co. cork, ireland, cork university hospital, cork, ireland p are newly established nursing homes more likely to transfer their acutely ill residents to our hospitals? mary ann furigay, jonathon o’keeffe, graham hughes, diarmuid o’shea st. vincent’s university hospital, dublin, ireland p simulation-based multi-disciplinary team training: does it enhance care quality for older people? nao kodate , katherine gavin , alastair ross , sarah donnelly , elaine wilson , diarmuid o’shea , graham hughes university college, dublin, dublin, ireland, st. vincent’s university hospital, dublin, ireland, university of glasgow, glasgow, uk p bon appetite: improving the mealtime experience of residents in long-term mental health units through education and training colette gill , mary kehoe , fionnuala duffy , caoibhe mcguinnes , graham hughes st. vincent’s university hospital, dublin, ireland, hse, dml, dun laoghaire, co. dublin, ireland ir j med sci ( ) (suppl ):s –s s p bmi as a predictor of mortality risk in older persons: the dublin outcome study hannah gogarty, adriana hadbavna, eamon dolan connolly hospital, blanchardstown, dublin, ireland p the importance of follow up ambulatory blood pressure in older adults adriana hadbavna , hannah gogarty , alice stanton , eamon dolan , eoin o’brien stroke and hypertension unit, connolly hospital, dublin, ireland, clinical pharmacology, royal college of surgeons in ireland, dublin, ireland, molecular pharmacology, conway institute, university college dublin, dublin, ireland p a review of anticoagulation in geriatric day hospital setting adriana hadbavna, hannah gogarty, funmi ikotun, christopher osuafor, siobhan kennelly, eamon dolan connolly hospital, dublin, ireland p acute stroke care audit in connolly hospital ( ) adriana hadbavna, lelane van der poel, hannah gogarty, funmi ikotun, siobhan kennelly, eamon dolan connolly hospital, dublin, ireland p cerebral amyloid angiopathy presenting as fast-positive acute stroke adriana hadbavna, lelane van der poel, eamon dolan connolly hospital, dublin, ireland p nurse-led warfarin clinic proving to be effective in maintaining patients within therapeutic inr range mary hickey , michael o’connor , irene hartigan , paul gallagher , natasha lewis st. finbarr’s hospital, health service executive, cork, ireland, school of nursing & midwifery, university college cork, cork, ireland p stroke syndromes: are we lost for words? amanda lavan , irene hartigan , paul gallagher , kieran o’connor cork university hospital, health service executive, cork, ireland, school of nursing and midwifery, university college cork, cork, ireland, mercy university hospital, cork, ireland p withdrawn p acute stroke calls to dublin fire brigade ambulance service – martin o’reilly , derek hayden , colm byrne , blathnaid murphy , tara daly , suzie doyle , sean murphy , christine newman , peter kelly , sean murphy dublin fire brigade ambulance service, dublin, ireland, mater hospital, dublin, ireland p a clinical audit to evaluate the efficacy of an active physiotherapy service in a cohort of elderly parkinson’s disease patients in an inpatient rehabilitation setting éilis hennessy our lady’s hospice and care services, dublin, ireland p the use of -hour holter monitor and echocardiogram in the investigation of acute ischaemic stroke zoe hutchinson, james mahon, joseph browne, imelda noone, morgan crowe, serena hatton st. vincent’s university hospital, dublin, ireland p adherence to esh/esc guidelines for management of hypertension in older adults in a nursing home population l murphy, kp james, e o’connor, a martin beaumont hospital, dublin, ireland p use of oral antihypertensives in frail nursing home residents kp james, l murphy, e o’connor, a martin beaumont hospital, dublin, ireland p the barriers to diagnosing dementia in primary care: a qualitative gp registrar perspective aisling jennings, tony foley university college cork, cork, ireland p to resus or not to resus? a -month cross-section view of in-patient resuscitation outcomes in an aged population emma jennings , roisin mcnamara , fiona o’sullivan , keith mcgrath , catherine peters , margaret o’connor , declan lyons , ann kenny-ryan , marie o’hora s ir j med sci ( ) (suppl ):s –s university hospital limerick, department of medicine, division of ageing and therapeutics, limerick, ireland, university hospital limerick, department of medicine, resus training department, limerick, ireland p audit: prevalence of proton pump inhibitor use in acute medical and surgical in patients rosemarie keenan , emer ahern , abirami subramaniam , breda cushen , james dalrymple , arjun sharma st. luke’s hospital kilkenny, kilkenny, ireland, university of limerick, limerick, ireland p assessment of functional capacity in metabolically healthy obese older adults cormac kennedy , david robinson , roman romero-ortuno , diarmuid o’shea , rosanne kenny , donal o’shea , jean o’connell st vincent’s university hospital, dublin, ireland, st james’s hospital, dublin, ireland, tilda, dublin, ireland p aetiology of acute stroke presentations to a hospital dzulkarnain khalil, claire farrelly, mian basit, martin mulroy, olwyn lynch, michael cotter, james close, jurate butkeviciute, mahvish zeeshan, lydia man, ihedinachi ndukwe, maimuna ismail, aman rao our lady of lourdes hospital, drogheda, ireland p atrial fibrillation: a preventable cause of ischaemic stroke dzulkarnain khalil, mian basit, martin mulroy, olwyn lynch, michael cotter, james close, jurate butkeviciute, mahvish zeeshan, lydia man, ihedinachi ndukwe, claire farrelly, aman rao, maimuna ismail our lady of lourdes hospital, drogheda, ireland p the relationship between cardiac health and physical activity levels in older adults sean kilroy, aileen lynch, gabrielle mckee trinity college dublin, dublin, ireland p delirium prevalence in older persons attending an irish acute medical unit áine heaney , diane krajewski , sean p kennelly school of medicine, trinity college dublin, dublin, ireland, acute medical unit, tallaght hospital, dublin, ireland p identification of cognitive impairment and dementia in older persons in the acute medical setting diane krajewski , áine heaney , grainne m murray , nichola sandys , sean p kennelly school of medicine, trinity college dublin, dublin, ireland, acute medical unit, tallaght hospital, dublin, ireland p clinical experience of denosumab at a specialist bone health unit rosaleen lannon, kevin mccarroll, nessa fallon, miriam casey, jb walsh bone health unit, mercer’s institute for research on ageing, st. james’s hospital, dublin, ireland p a study of patients with bilateral colles fractures attending a specialist bone health clinic rosaleen lannon, niamh murphy, georgina steen, miriam casey, jb walsh bone health unit, mercer’s institute of research on ageing, st. james’s hospital, dublin, ireland p vitamin d in acute hip fracture rosaleen lannon, evelyn lynn, brendan mccarthy, niamh maher, miriam casey, kevin mccarroll, jb walsh bone health unit, mercer’s institute for research on ageing, st. james’s hospital, dublin, ireland p setting our goals on a gerontological rehabilitation unit from a nursing perspective joanne larkin, avril mckeag, michelle keane cappagh national orthopaedic hospital, dublin, ireland p mortality rate and associated factors in older adults following hip fracture niamh maher, georgina steen, nessa fallon, kara fitzgerald, joseph browne, rosaleen lannon, kevin mccarroll, jb walsh, miriam casey st. james’s hospital, dublin, ireland p non-attendance at a bone health clinic following hip fracture niamh maher, nessa fallon, georgina steen, dymphna hade, rosaleen lannon, kevin mccarroll, miriam casey, jb walsh st. james’s hospital, dublin, ireland p recording patient identification data on geriatric wards sean kelleher, alison mchugh, mark murphy, maitiu o’tuathail, james mahon st. vincent’s university hospital, dublin, ireland ir j med sci ( ) (suppl ):s –s s p the nursing home conundrum: a model for prospective interdisciplinary care james mahon, mark murphy, maitiu o’tuathail, zoe hutchinson, diarmuid o’shea, morgan crowe, graham hughes department of medicine for the elderly, st. vincent’s university hospital, dublin, ireland p patient activity in a nurse led clinic: active stand tests in a dedicated falls service audrey mc loughlin, anne o’driscoll tallaght hospital, dublin, ireland p a retrospective review of the cognitive profile of post-stroke patients within an acute irish setting over a -month period sarah mc nally, morgan crowe, imelda noone st. vincent’s university hospital, dublin, ireland p cognitive frailty in older irish adults k mccarroll , a beirne , m casey , h mcnulty , s strain , m ward , e laird, a molloy , c cunningham mercer’s institute for successful ageing, dublin, ireland, department of gerontology, st. james’s hospital, dublin, northern ireland centre for food and health, coleraine, derry, ni, usa, biomedical sciences institute, trinity college dublin, dublin, ireland p the development of a functional balance re-education class in a gerontological rehabilitation unit louise mccarron, mary nolan, kate o’ mahony, jill long cappagh national orthopaedic hospital, dublin, ireland p comparative accuracy of motion sensors for frail-older hospitalised patients ruth mccullagh , ann-marie o’connell , christina dillon , frances horgan , suzanne timmons university college cork, cork, ireland, royal college of surgeons, dublin, ireland p validation of the picture naming task from the nih stroke scale for an irish population meghan burns , kate somers , paul mcelwaine , joe harbison school of medicine, trinity college, dublin, ireland, department of gerontology, st. james’s hospital, dublin, ireland p documentation of resuscitation status: an audit of current practice in an acute hospital paul mcelwaine, paul mcelhinney, deniz demirdal, david robinson department of gerontology, st. james’s hospital, dublin, ireland p an audit of the physiotherapy stroke service at a model hospital in dublin colin mcgrath , sarah peppard , ania swietliczna , emer o’malley trinity college, dublin, dublin, ireland, st. columcille’s hospital, loughlinstown, dublin, ireland p an occupational therapy led memory health group for community-dwelling older adults in a community reablement unit: evaluation and vision gillian mchugh, geraldine connolly our lady’s hospice and care services, dublin, ireland p improving the management of gentamicin in older patients in an acute hospital setting carmel mckenna, rosemary curran, john fitzsimons, michaela pentony, linda rickard, eithne dunnill, martin mulroy, elaine conyard our lady of lourdes hospital, drogheda, co. louth, ireland p development of an orthogeriatric service in an irish tertiary referral hospital sarah mello, josie clare cork university hospital, cork, ireland p clinical audit of bone health in hiv positive patients over years of age elizabeth moloney, aoife cotter, mary horgan, arthur jackson, gabriella rizzo cork university hospital, cork, ireland p the factors associated with the use of assistive technology among community dwelling individuals diagnosed with multiple sclerosis lorraine morrin, manigandan chockalingam national university of ireland, galway, ireland p occupational therapy effectively providing holistic care in a frail elderly active rehabilitation unit (aru) catherine mulvihill, emma nolan, alison sweeney, siobhan marshall, anna szarata, fiona armstrong cappagh national orthopaedic hospital, dublin, ireland s ir j med sci ( ) (suppl ):s –s p a study of the inter-rater reliability, feasibility and validity of the cognitive vital sign (cvs) screening tool padraic nicholas , william molloy , yang gao , ronan o’ caoimh university college cork, cork, ireland, st. finbarr’s hospital, cork, ireland, mercy university hospital, cork, ireland p the introduction of an interdisciplinary quality improvement forum within a new gerontological rehabilitation unit joanne larkin, emma nolan, mary nolan, kate o’mahony cappagh national orthopaedic hospital, dublin, ireland p three year audit of prevalence and management of atrial fibrillation post-stroke in an acute hospital imelda noone, serena hatton, graham hughes, diarmuid o’shea, morgan crowe st.vincent’s university hospital, dublin, ireland p cerebral small vessel disease (csvd) in very old patients morgan crowe , michael farrell , niamh nolan st.vincent’s university hospital, dublin, ireland, st.columcille’s hospital, dublin, ireland p taking the service to the community–geriatrician–primary care liaison service ontefetse ntlholang , eoin o’donoghue , fergus o’kelly , kevin o’doherty , siobhan o’kelly , david james robinson st. james’s hospital, dublin, ireland, coombe family practice, dolphin’s barn street, dublin, ireland, rialto medical centre, south circular road, dublin, ireland p cough ‘till you drop helen o’brien, blaithin ni bhuachalla, celia o’hare, jaspreet bhangu, ciara rice, lisa byrne, patricia hall, rose anne kenny trinity college dublin, dublin, ireland p a retrospective review of the ot (occupational therapy) off road driving assessment pathway in a day hospital setting louise o’ callaghan , diarmuid o’shea st vincent’s university hospital, dublin, ireland, carew house day hospital, st.vincent’s university hospital, dublin, ireland p outcomes of a multi-disciplinary rehabilitation consultation team elaine o connor, sarah doyle, sinead coleman, fiona connaughton, conal cunningham st. james’s hospital, dublin, ireland p outcomes of occupational therapy interventions within a stroke early supported discharge (esd) service; a month retro- spective clinical audit laura o’donnell , desmond o’neill , ronán collins , tara coughlan , dominic mccabe , sinead murphy , richard walsh , joe harbison , dr collins tallaght hospital, dublin, ireland, st. james’s hospital, dublin, ireland p bleeding obvious: the hazard of prescribing warfarin to the colour blind tomoaki hayakawa , dearbhail o flynn , sonia ruparell , david gough , ciaran donegan beaumont hospital, dublin, ireland, rcsi, dublin, ireland p the use of antipsychotics for dementia in acute hospitals paul gallagher , sean kennelly , anna de siun , emma o’ shea , desmond o’ neill , suzanne timmons university college cork, cork, ireland, trinity college dublin, dublin, ireland p one-year outcomes in stroke patients treated with iv thrombolysis fiona o’ sullivan, nurasyikin kamaruddin, nora cunningham, peter boers, john mcmanus, catherine peters, margaret o’connor, declan lyons university hospital limerick, limerick, ireland p polypharmacy and proton pump inhibitor prescribing in older patients stephen tobin , stephen power , rónán o’caoimh , mike o’connor the university of aberdeen medical school, aberdeen, scotland, uk, cork university hospital, cork city, ireland p audit of drug kardex’s in older patients laurna mcgovern, mu’adz mohd zubir, rónán o’caoimh, paul gallagher cork university hospital, cork city, ireland p the use of ct perfusion in the assessment of older adults presenting with acute ischaemic stroke rónán o’caoimh, amanda lavan, patrick nicholson, glen arrigan, mary buckley, norma harnedy, denis o’mahony, padrigin o’sullivan, mike o’connor, paul gallagher cork university hospital, cork city, ireland ir j med sci ( ) (suppl ):s –s s p comparing subjective and objective measures of frailty using the deficit accumulation approach olga theou , matthew o’connell , bellinda king-kallimanis , aisling o’halloran , kenneth rockwood , rose anne kenny dalhousie university, halifax, nova scotia, canada, trinity college dublin, dublin, ireland p classifying age-related health deficits: a latent class analysis matthew o’connell, rose anne kenny, bellinda king-kallimanis trinity college, dublin, dublin, ireland p anticholinergic burden in older adults with intellectual disability; relationships with multimorbidity and adverse effects maire o’dwyer , anne belton , jure peklar , ian maidment , philip mccallion , mary mccarron , martin henman trinity college dublin, dublin, ireland, trinity college dublin, dublin, ireland, university of ljubljana, ljubljana, slovenia, aston university, aston, uk, university of albany, new york, usa, trinity college dublin, dublin, ireland, trinity college dublin, dublin, ireland p invisible policies: a scoping literature review of wheelchair and seating provision for older people in irish nursing home settings eleanor o’gorman, rosemary joan gowran university of limerick, limerick, ireland p frailty as a marker of premature biological ageing: preliminary evidence from the irish longitudinal study of ageing (tilda) and a community-based methadone treatment program aisling o’halloran , juliet bressan , bellinda king-kallimanis , matthew o’connell , alma olohan , eamon keenan , joseph barry , rose anne kenny trinity college, dublin, ireland, hse addiction service, dublin mid-leinster, ireland p the relationship between frailty and the timed up and go in a post-acute rehabilitation unit mary nolan, kate o’mahony, jill long cappagh national orthopaedic hospital, dublin, ireland p behavioural features of impending delirium niamh o’regan , james fitzgerald , dimitrios adamis , david william molloy , david meagher , suzanne timmons centre for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland, graduate entry medical school, university of limerick, limerick, ireland, sligo mental health services, sligo, ireland p scoring frailty in acute medical patients niamh o’regan , james fitzgerald , elvira kuhn , niamh o’donoghue , claire o’dowling , david william molloy , david meagher , suzanne timmons centre for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland, graduate entry medical school, university of limerick, limerick, ireland, cork university hospital, cork, ireland p an audit of the use of psychotropics in an extended care setting s perumal, h toohey, c mcgann our lady’s hospice and care services, dublin, ireland p towards a profile of dementia risk and online supports for dementia risk reduction: translating findings from a robust model based on modifiable risk factors maria pierce, muriel redmond, kate irving dublin city university, dublin, ireland p an alternative home-based, electronically monitored model of interim care (ic) dermot power, estelle ogbebor, ciara dowling, eamonn brazil, mary day mater misericordiae university hospital, dublin, ireland p an unusual cause of arm weakness: ‘‘don’t let the cat out of the bag’’ maire rafferty, sarah coveney, joanna mcglynn, kieran o’connor, suzanne timmons mercy university hospital, cork, ireland p denosumab continuation in the primary care setting; is cost contributing to decreased compliance? navneet ramlaul , caroline ryan , fiona o’sullivan , declan lyons , margaret o’connor , catherine peters department of medicine, division of ageing and therapeutics, university hospital limerick, limerick, ireland, st. camillus’ hospital, limerick, ireland s ir j med sci ( ) (suppl ):s –s p frailty in older patients discharged from a general hospital david easty, brenda kwiatkowski, mohammed mohammed, brid jordan-murphy, anna murphy, killian nugent, eithne harkin, michael reardon wexford general hospital, wexford, ireland p an audit of the prevalence of pain and its management in elderly hospitalised patients aoiffe lemasney, fiona roberts, padraig bambrick, george pope, riona mulcahy waterford regional hospital, waterford, ireland p can we utilise hospital readmission rates as a key performance indicator? stephanie robinson , michelle canavan , eamon mulkerrin , martin o’donnell galway university hospital, galway, ireland, clinical research facility, national university of ireland, galway, ireland p an audit of the quality of nursing home referral letters to the emergency department in patients requiring medical admission patrick cullinan, tom walsh, stephanie robinson, michelle canavan, martin o’donnell, eamon mulkerrin galway university hospital, galway, ireland p a collaborative approach to falls prevention and management through action research daragh rodger, anne spencer hse, dublin, ireland p communication of confirmed diagnoses of dementia and delirium between hospital and general practitioners niamh scanlan , siobhan kelly , tara coughlan , ronan collins , sean kennelly , des o’neill amnch, dublin, ireland, icgp, dublin, ireland p acute stroke admissions to a model- hospital: analysis of atrial fibrillation and anticoagulation status paul scully , fiona o’sullivan , nora cunningham , peter boers , catherine peters , margaret o’connor , declan lyons division of ageing and therapeutics, department of medicine, university hospital limerick, limerick, ireland, division of neurology, department of medicine, university hospital limerick, limerick, ireland p implementation of a dedicated orthogeriatric service saves the hse a million euro elaine shanahan, carla henderson, audry butler, sheila carew, tina sheehy, aine costelloe, brian lenehan, catherine peters, margaret o’connor, declan lyons, jude ryan university hospital limerick, limerick, ireland p nursing versus consultant led rehabilitation: a review post change of service elaine shanahan , mohammed shahril hashim , mairead greene , mavis long , margaret o’connor , declan lyons , catherine peters university hospital limerick, limerick, ireland, community hospital of the assumption, thurles, ireland p the establishment of an orthogeriatric service improves patient outcomes following a hip fracture carla henderson , elaine shanahan , audry butler , brian lenehan , margaret o’connor , catherine peters , declan lyons , jude ryan university hospital limerick, limerick, ireland, university of limerick, limerick, ireland p an interdisciplinary stroke rehabilitation service in a county hospital: overview of the past years elaine ranahan, emma mcguinness, sankar prasad shanmuga sundaram, martin mulroy, colette vize louth county hospital, dundalk, ireland p retrospective cohort study of a county hospital stroke patients: demographics and risk factors emma mcguinness, elaine ranahan, sankar prasad shanmuga sundaram, martin mulroy, colette vize louth county hospital, dundalk, ireland p the feasibility of a prescribed aerobic training programme in a sub-acute stroke population in a rehabilitation unit louise smith , sophie lang , emer guinan , sinead coleman , joseph harbison department of physiotherapy, st. james’s hospital, dublin, ireland, discipline of physiotherapy, trinity centre for health sciences, st. james’s hospital, dublin, ireland, consultant stroke physician and geriatrician, st. james’s hospital, dublin, ireland p extended zoledronic acid treatment in older patients with osteoporosis josephine soh, james foley, miriam casey, j bernard walsh, rosaleen lannon, kevin mccarroll medicine for the elderly directorate, st james’s hospital, dublin, ireland p patient profile, length of stay, cognitive impairment and elderly mobility scale scores in patients over years admitted to a major trauma hospital post femoral fracture peter spencer, aine masterson, daire plunkett, dervilla danaher, joseph duggan mater misericordiae university hospital, dublin, ireland ir j med sci ( ) (suppl ):s –s s p analysis of acute ischaemic stroke presentations abirami subramaniam, arun subramanian, hannah murugan, paul cotter, rory mcgovern st. luke’s general hospital, kilkenny, ireland p limiting factors to thrombolysis for acute stroke abirami subramaniam, arun subramanian, hannah murugan, paul cotter, rory mcgovern st. luke’s general hospital, kilkenny, ireland p head up tilt table testing (hutt) for transient loss of consciousness (tloc): are referrals appropriate and do they concur with european society of cardiology (esc) guidance? can we identify areas where a specific referral form would improve appropriateness and patient safety? michelle tennyson, charlie ong, kevin dynan ulster hospital, belfast, uk p staff attitudes to the seasonal influenza vaccination programme c tiernan , j collier , l cogan the royal hospital donnybrook, dublin , ireland, school of medicine and medical science, ucd, dublin , ireland p the impact of a regular multidisciplinary medication review on polypharmacy and psychotropic prescribing in care home residents: a follow-up study j collier , c tiernan , n casey , s evans , l cogan the royal hospital donnybrook, dublin , ireland, school of medicine and medical science, ucd, dublin , ireland p a feedback survey of gps on a comprehensive multidisciplinary discharge summary sent out on patients discharged from an offsite rehabilitation unit james collier, caitriona tiernan, lisa cogan the royal hospital donnybrook, dublin , ireland p a high uptake of the influenza vaccine by staff has a positive outcome for residents in long term care facilities: an observational audit tomasz tomasiuk, catherine dunleavy tara winthrop private clinic, swords, co. dublin, ireland p a multi-disciplinary quality improvement initiative for a pre-prosthetic amputee rehabilitation pathway in a gerontological post-acute rehabilitation unit sarah tormey, mary nolan, kate o’mahony, emma nolan, yvonne doran cappagh national orthopaedic hospital, dublin, ireland p time spent in physiotherapy in an acute stroke unit: is it enough? mary weir mcdonnell, fiona gorman, tom lee, tom o’malley mayo general hospital, castlebar, ireland p challenges for gerontological nurse education and practice claire welford mowlam healthcare, ireland psychology of ageing. p modelling solé-padullés cognitive reserve questionnaire: construct validity and association with cognitive function lorraine boran , david delany , lisa mcgarrigle , terry mcelvaney , sean mccarthy , angela stewart dublin city university, dublin, ireland, waterford institute of technology, waterford, ireland, trinity college dublin, dublin, ireland p the distress management system for stroke, an approach for screening and managing psychological distress post-stroke nicola cogan, suzanne greene, aine connolly, ronan collins tallaght hospital, dublin, ireland p the influence of lifestyle factors on cognitive performance in irish adults aged and over c. hannigan , s. brennan , r. coen , i.h. robertson , b. lawlor neil (neuroenhancement for independent lives), trinity college institute of neuroscience, dublin, ireland, mercer’s institute for research on ageing, st. james’s hospital, dublin, ireland s ir j med sci ( ) (suppl ):s –s p cognitive interventions for healthy older adults: a systematic review michelle kelly , david loughrey , brian lawlor , ian robertson , cathal walsh , sabina brennan the neil programme, trinity college institute of neuroscience, dublin, ireland, the department of statistics, trinity college dublin, dublin, ireland p exercise interventions for healthy older adults: a systematic review michelle kelly, david loughrey, brian lawlor, ian robertson, cathal walsh, sabina brennan trinity college dublin, dublin, ireland p modeling cognitive reserve: investigating construct validity and the impact of age on model fit lisa mcgarrigle , lorraine boran , kate irving , martin van boxtel , frans verhey , sebastian kohler dublin city university, dublin, ireland, maastricht university, maastricht, the netherlands p being with and being without: an ethnography of relating in dementia care kellie morrissey university college cork, cork city, ireland p individualised cognitive therapy through stimulation and individualised sims (sonas individual multi-sensory session) with long stay psychiatry of later life subjects who have cognitive impairment maryrose mulry , orla brady , michael o’cuill , geraldine kelly , agnes shiel national university of ireland, galway, galway, ireland, health service executive, mullingar, ireland p behavioural and non-cognitive symptoms of dementia in acute hospitals emma o’ shea , aoife barrett , edmund manning , vanessa browne , david william molloy , niamh o’ regan , suzanne cahill , john linehan , kathleen o’ sullivan , noel woods , david meagher , aoife ni chorcorain , suzanne timmons centre for gerontology & rehabilitation, school of medicine, university college cork, cork, ireland, dementia services information and development centre, st. james’s hospital, dublin, ireland, services for older people, hse, ireland, school of mathematical science, university college cork, cork, ireland, centre for social policy studies, university college cork, cork, ireland, department of psychiatry, university of limerick, limerick, ireland, cork university hospital, hse, cork, ireland p brief dementia screens in clinic: comparison of the quick mild cognitive impairment (qmci) screen and six item cognitive impairment test ( cit) rónán o’caoimh, william molloy centre for gerontology & rehabilitation, st. finbarr’s hospital, cork city, ireland p recommendations for incorporating lifelogging technologies into therapeutic approaches for people with dementia paulina piasek , alan smeaton , kate irving dublin city university, dublin, ireland, insight, dcu, dublin, ireland p feasibility and validity of using cognitive training applications to assess cognition in community dwelling older people lorraine scanlon , emma o’shea , rónán o’caoimh , suzanne timmons school of medicine, university college cork, cork, ireland, centre for gerontology and rehabilitation, university college cork, st finbarr’s hospital, cork, ireland p resilience in older age: living as married and with religious belief reduce the negative effect of increased disability on quality of life among older people in ireland eithne sexton , bellinda king-kallimanis , richard layte , anne hickey royal college of surgeons in ireland, dublin, ireland, tilda project, trinity college dublin, dublin, ireland, economic and social research institute, dublin, ireland social gerontology. p nature and extent of elder abuse in ireland: examining role of primary care practitioners george bradshaw, claire o tuathail national university of ireland, galway, galway, ireland p attitudes to ageing and perceptions of working with older people of students of health and social care alice coffey , geraldine mccarthy , mark tyrell , catherine buckley , uta gaidys , julita sansoni , marjut arola , dagnija deimante-hartmane university college cork, cork, ireland, university of applied sciences, hamburg, germany, sapienza university of rome, italy, karelia university of applied sciences, joensuu, finland, rı̄ga stradiņš university liepāja branch, riga, latvia p loneliness and older adults living in residential care: an exploration of the factors that may influence it siobhan clarke trinity college dublin, dublin, ireland ir j med sci ( ) (suppl ):s –s s p home-care re-ablement services for improving and maintaining the functional independence of older adults: a cochrane review andy cochrane , sinead mcgilloway , mairead furlong , willie molloy , michael stevenson , michael donnelly department of psychology, national university of ireland maynooth, maynooth, ireland, centre of gerontology and rehabilitation, school of medicine, university college cork, cork, ireland, clinical research support centre, royal group of hospitals trust, belfast, uk, centre for public health, queen’s university, belfast, uk p capturing the quality of death and dying in long term care (ltc) facilities: family perspectives una cronin, nicola cornally, alice coffey, eileen o’herlihy, edel daly, ciara mcglade, william molloy university college cork, cork, ireland p health care professionals’ perceptions of a connected health model for dementia denis curtin , sarah cosgrave , patrick slevin , dermot power , diarmuid o’shea ucd, dublin, ireland, st. vincent’s university hospital, dublin, ireland, mater misericordiae university hospital, dublin, ireland p caregivers’ perception of a connected health model for dementia care denis curtin , sarah cosgrave , patrick slevin , dermot power , diarmuid o’shea ucd, dublin, ireland, st. vincent’s university hospital, dublin, ireland, mater misericordiae university hospital, dublin, ireland p an exploration of the experiences of formal carers who participate in life story work with people with dementia in the residential care setting mary doyle peamount healthcare, dublin, ireland p combatting elder abuse: learning from each other/working together marita o’brien, naomi feely age action, dublin, ireland p informal carer perceptions of providing mealtime assistance to people with dysphagia in a long term residential care facility sinead keane , joseph yazbeck , julia o’rourke leopardstown park hospital, dublin, ireland, tallaght hospital, dublin, ireland p the role of driving for older adults in rural ireland mairead larkin, linda horgan ucc, cork, ireland p implementing an age-friendly county programme: no easy job. a stakeholder’s perspective bernard mcdonald national university of ireland galway, galway, ireland p exploring the perspectives and experiences of business managers when working with customers with dementia hannah murphy, jeanne jackson university college cork, cork, ireland p an audit of the plate pal volunteer programme in a long term care nursing unit for older persons ciara murphy , rosanne staveley raheny community nursing unit, raheny, dublin, ireland, beaumont hospital, beaumont, dublin, ireland p withdrawn p ‘double edged sword’: perceptions of nurses to the introduction of pet therapy for older people with an intellectual disability phil noone, ann marie scahill national university of ireland, galway, galway, ireland p an exploration of older adults’ internet use in an irish context niamh lane, clare o’sullivan university college cork, cork, ireland p exploring the impact of frailty on the health and social care system in ireland lorna roe , aisling o’halloran , charles normand centre for health policy and management, trinity college dublin, dublin, ireland, the longitudinal study on ageing, trinity college dublin, dublin, ireland s ir j med sci ( ) (suppl ):s –s p a review of integrated care mechanisms used to better coordinate care across sectors for community-dwelling frail older people lorna roe, charles normand centre for health policy and management, trinity college dublin, dublin, ireland p how a night nursing service supports older people to die at home deirdre shanagher, marie lynch, carmel collins irish hospice foundation, dublin, ireland p the key to meaningful ageing in residential care claire welford mowlam healthcare, ireland all abstracts from the platform sessions and posters received full ethical clearance and informed consent where necessary. all authors confirm that they have no conflict of interest. ir j med sci ( ) (suppl ):s –s s platform presentations o acute post-stroke blood pressure relative to pre- morbid levels in intracerebral haemorrhage versus major ischaemic stroke: population-based study marie therese cooney , urs fischer , linda bull , louise silver , john chalmers , craig anderson , ziyah mehta , peter rothwell stroke prevention research unit, nuffield department clinical neurosciences, university of oxford, oxford, uk; the george institute for global health, university of sydney, sydney, australia background: post-stroke hypertension is common and is associated with a worse prognosis. however, no study has analysed pre-morbid bp to determine whether acute-phase levels are unaccustomed. in view of evidence from trials that the balance of risk and benefit of bp- lowering in acute stroke might differ for major ischaemic stroke versus primary intracerebral haemorrhage (ich), we compared acute- phase and premorbid bp levels. methods: all acute-phase post-event bp readings were compared with pre-morbid readings from -year primary care records in a population-based study (oxford vascular study; - ) in all patients with acute major ischaemic stroke (nihss [ ) versus acute ich. results: premorbid bp readings (median = /patient) and acute- phase readings were available in ( . %) consecutive eligible patients. in ischaemic stroke, the first acute-phase sbp was much lower than after ich ( . vs . mmhg, p \ . ), was little higher than pre-morbid levels (increment = . mmhg vs -year average premorbid level) and declined only modestly during the first -hours (mean decrement from \ minutes to hours = . mmhg). in contrast, the mean first sbp after ich was markedly higher than pre- morbid levels (increment = . mmhg, p \ . ) and fell sub- stantially in the first hours (mean decrement = . mmhg; difference from decrement in ischaemic stroke—p = . ). mean sbp also increased steeply in the days and weeks prior to ich (regres- sion—p \ . ) but not prior to ischaemic stroke. in patients with ich seen within minutes, their highest sbp within hours of onset was mmhg higher, on average, than the maximum pre-morbid level whereas that after ischaemic stroke was . mmhg lower (difference p \ . ). conclusions: sbp is markedly raised compared with usual pre-morbid levels after ich, whereas acute-phase sbp after major ischaemic stroke is much closer to the accustomed long-term pre-morbid level. o high prevalence of atrial fibrillation in acute stroke in a rural population ikwain marion, padraic mcdonagh, niamh murtagh, tom lee, tom o’malley mayo general hospital, castlebar, ireland background: atrial fibrillation (afib) is estimated as a major risk factor for stroke in up to a third of ischaemic stroke cases. the cha ds -vasc score for risk identification highlights female gen- der in afib. objectives: to estimate prevalence of atrial fibrillation in stroke patients methods: as part of a stroke register we prospectively recorded the prevalence of afib in (n) consecutive patients ( ishaemic, haemorhagic and with transient ishaemic attack (tia), mean age . , male, female) admitted to a general hospital stroke unit in . we used fisher’s and student’s t-test for our statistical analysis. results: a total of ( . %) adults were found to have atrial fibrillation. afib was more common in female patients ( . %) than in male patients ( . %) p \ . . fifty-eight ( . %) were aged years and older. prevalence increased from % among adults younger than years to % in persons aged – years to . % in persons aged and older. a. fib was identified in / ischaemic ( %) of which ( %) was previously known. sixty- seven had prior afib, female ( %) and men ( %). of these ( %) were on no anticoagulant or antiplatelet therapy, female ( %) vs male ( %) (p = . ). in afib haemorhagic stroke occurred in ( %) and ( %) received thrombolysis. six ( %) had documented reason for non-prescription, major bleeding ( ), falls ( ) and frailty ( ). there was no documented discussion in the remaining nine patients. death occurred in ( . %) with afib vs ( . %) without (p = . ns). mean age of stroke patients with afib v no afib was . vs . years (p = . ) conclusions: our study confirms that atrial fibrillation is common among elderly stroke patients especially females. atrial fibrillation awareness campaigns need to target ‘mná scothaosta na héireann’. o the management of atrial fibrillation and the use of oral anticoagulation for stroke prevention in long- term care rónán o’caoimh , estera igras , abdul ramesh , ber power , richard liston gerontology and rehabilitation, st finbarr’s hospital, cork city, ireland; kerry general hospital, tralee, co kerry, ireland; st. columbanus home & killarney community hospital, killarney, co kerry, ireland background: oral anticoagulation therapy (oat) is the most effective means of stroke prevention in older people with atrial fibrillation (af). the point prevalence of af and the use of oat in long-term care (ltc) are poorly characterised. methods: we conducted a cross-sectional study in four high-depen- dency ltc institutions in county kerry, ireland between may and january . point prevalence of af was determined by an electrocardiograph (ecg), the prevalence of documented af and oat prescription by chart review. residents were classified into ‘known-persistent’, occult, paroxysmal and ‘never-known’ af. the chads and hemorr hages scores were used to predict stroke and bleeding risk, respectively. results: in total residents, median barthel score / and mini-mental state examination score / , were included. of these, had ecg-demonstrated af, a point prevalence of %. chart review showed that ( %) had documented af. in all, had ‘known-persistent’ af, occult af and paroxysmal af. of those with documented af, were prescribed oat (all warfarin), a prevalence of %. no residents with occult af received oat. there was no significant difference in the distribution of chads (median score two, p = . ) or hemorr hages scores (median score three, p = . ) between documented and occult cases. com- bining risk tools showed that % of documented and % of occult cases were high risk for both stroke and bleeding. applying european society of cardiology (esc) guidelines, demonstrated a significant ir j med sci ( ) (suppl ):s –s doi . /s - - - association between chads scores and receiving appropriate oat, p = . . conclusions: the prevalence of af seen was high compared to other studies in ltc with large numbers of occult cases. while the prev- alence of anticoagulation was low, it was similar to other studies and reasonable in the context of residents’ high dependency levels. although the management of documented af cases using esc guidelines was appropriate, the hemorr hages scores suggested that oat should be avoided for the majority. o an investigation of the relationship between orthostatic blood pressure recovery patterns and visual function bláithı́n nı́ bhuachalla , christine mcgarrigle , stephen beatty , rose anne kenny discipline of medical gerontology, trinity college dublin, dublin, ireland; the irish longitudinal study on ageing, trinity college dublin, dublin, ireland; macular pigment research group, vision research centre, waterford institute of technology, waterford, ireland background: hypertension is established to cause end organ damage and emerging evidence suggests variability in blood pressure (bp) also to be significant. given that ocular blood flow is rigorously autoregu- lated, the eye offers an opportunity to investigate the relationship between neurocardiovascular instability (ncvi) and end organ damage. methods: data from the first wave of the irish longitudinal study on ageing was used. of , participants, , underwent a health assessment in which finometry, beat to beat bp and heart rate data from active stand (as), were collated. best available corrected visual acuity (va) was assessed by means of a logmar chart. contrast sensitivity (cs) over spatial frequencies was assessed using a functional visual analyser. to determine if ncvi, defined by ortho- static bp behavior, was associated with worse visual function, multiple linear regression was used incorporating outcome measures, logmar va and cs, and confounders such as demographics, eye diseases, diabetes, objective hypertension amongst others. novel phenotypes (a–d) of orthostatic bp recovery behavior were created, by comparing sbp/dbp at , , , seconds after as, to baseline (b) sbp/dbp pre stand. phenotype a was defined as a per- sistent recovery to within / mmhg of bsbp/dbp; (b) persistent deficit of[ / mmhg from bsbp/dbp; (c) persistent overshoot of [ / from bsbp/dbp and (d) variability: [ / mmhg sbp/ dbp overshoot and or deficit and or recovery to within / mmhg of bsbp/dbp, at – – – seconds. phenotypes b, c and d were compared to phenotype a in the analysis. results: in the fully adjusted model, worse logmar va was associated with phenotype d for both sbp (p = . ) and dbp (p = . ). worse mean cs was also associated with phenotype d for sbp (p = . ). conclusions: variability or non steady-state recovery to within / mmhg of bsbp/dbp, seconds after stand was cross-sec- tionally associated with worse visual function. o stroke awareness before, during and after the irish national stroke awareness ‘‘fast’’ campaign ruth dwyer, breffni drumm, robert briggs, des o’neill, tara coughlan, ronan collins amnch, tallaght, dublin , ireland background: public awareness of signs and symptoms of stroke is vital in ensuring appropriate action and timely treatment in acute stroke. previous studies have shown that public awareness improves during media campaigns but may not be sustained afterwards. methods: we conducted three surveys; before, during and after a national stroke awareness media campaign. we assessed public knowledge of stroke symptoms and appropriate response. people were surveyed on each occasion via door-to-door and telephone interviews. results: public awareness of the core stroke symptoms significantly improved during and after the fast campaign (p \ . ). the number who could not name any signs of stroke was halved during the campaign. symptoms such as visual loss and dizziness, which were not included in fast, were mentioned less frequently afterwards (p \ . ). personal exposure to stroke was reported more frequently after (p \ . ). in response to stroke symptoms, more people reported that they would call during the campaign, than pre-campaign. following withdrawal of the campaign this dropped back to initial levels. during the campaign, the proportion who would ‘wait and see’ if they thought they were having a stroke halved compared to pre-campaign (p \ . ). the impact of the fast campaign was seen predominantly amongst higher socio-economic (se) groups. awareness of core stroke symp- toms after the campaign was significantly more improved in higher se groups when compared with lower se groups (p \ . ). conclusion: our data shows that people were more likely to recog- nize core symptoms of stroke following a stroke awareness campaign. this was sustained following withdrawal of the campaign. the campaign was more successful in targeting higher se groups. similar to previous studies, we demonstrated that although during the campaign more people would call if they thought they were having a stroke, this was not sustained afterwards. this suggests the ongoing need for public awareness campaigns. o the month journey of thrombolysis in a university hospital nora cunningham, fiona o’sullivan, peter boers, catherine peters, declan lyons, john mcmanus, elijah chaila university hospital, limerick, ireland background: stroke treatment in a major teaching hospital has made remarkable improvements since the development of acute stroke services in by establishing a fourteen bedded acute stroke unit offering / thrombolysis, the appointment of a dedicated stroke nurse specialist, stroke occupational therapist and a dedicated speech and language therapist. we provide this service to a catchment area with a population of , . a review was carried out to examine the efficiency and outcomes of acute stroke assessment and treatment with respect to stroke thrombolysis since our establishment. methods: data was collected prospectively and compiled using the hipe esri national stroke database from may to december .a retrospective analysis was undertaken on thrombolysed patients admitted during this period. results: from june to december a total of ischaemic strokes were admitted. patients presented with acute ischaemic stroke and in . median age was years with % female and % male. . % (n = ) of all these were thrombolysed in , with an increase to a rate of . % (n = ) in . mean time of onset to time of arrival was minutes in and . minutes in . door to needle time in was minutes and minutes in . door to ct time was minutes in and ir j med sci ( ) (suppl ):s –s s minutes in . our seven day mortality rate was . % in and . % in conclusion: these results reflect an increasing thrombolysis rate as our service has developed. the results show that there is scope to improve the efficiency at each step of thrombolysis delivery. the reasons underlying these delays should be examined with a view of improving same. some of the factors that should be taken into con- sideration are the geographic demographics and the large catchment area the hospital incorporates. o stroke thrombolysis in older adults attending a university hospital: audit of results between – . has the f.a.s.t campaign improved delivery in clinical practice? rónán o’caoimh, amanda h lavan, glen arrigan, mary buckley, norma harnedy, paidrigin o’sullivan, denis o’mahony, mike o’connor cork university hospital, cork city, ireland background: the f.a.s.t campaign, introduced in ireland in may , aims to increase pre-hospital awareness of stroke and reduce delay in thrombolysis. while evidence suggests that public awareness of stroke, particularly the need for urgent assessment have improved, it is not known if this has impacted on rates of thrombolysis in older adults, particularly outside of research centres. methods: we performed a retrospective chart review assessing stroke care in a university teaching hospital since the opening of an acute stroke unit in march . we compared stroke management, contrasting thrombolysis outcomes pre-f.a.s.t in and with . charts were reviewed for each year for a similar three-month period. results: the median age of patients presenting with stroke was (range – ) years in compared with (range- – ) in and ( – ) in . there were no significance differences in age (p = . ) or gender (p = . ) between and . where available, % (n = / ) of patients presented within . hoursin compared to % (n = / ) in and % (n = / ) in . of these, % (n = / ), % (n = / ) and % (n = / ) presented within hours for , and , respectively. the number of potentially thrombolysable strokes increased from . % ( / ) in , to % ( / ) in and % ( / ) in . the number of patients with confirmed infarcts that received thrombolysis also increased from . % ( / ) in to . % ( / ) by and % ( / ) in . conclusion: the stroke thrombolysis rate improved consistently between and . although the percentage of patients pre- senting within the thrombolysis window appears to have increased, thrombolysis rates have increased only modestly. correlation with national data is required to investigate if the perceived success of the f.a.s.t campaign has translated into clinically meaningful results and if not to investigate possible reasons behind this. o the changing physical health of the over- s ( – ): findings from the irish longitudinal study on ageing ciaran finucane , joanne feeney , hugh nolan , claire o’regan , hilary cronin , rose anne kenny tilda, tcd, dublin, ireland; st. james’s hospital, dublin, ireland background: in , cronin et al. [ ] reported on the high preva- lence of chronic disorders and falls in the over ’s population of ireland. here we report on the changes which have occurred in the prevalence and the incidence of chronic conditions and falls over the period – . methods: data from wave (n = ) and wave (n = ) of tilda is analysed using from participants aged and over to facilitate cross-wave comparisons. incidence rates are restricted to participants who took part in both wave and wave only. two-year incidence rates are calculated as the number of individuals who newly report a health condition at wave expressed as a proportion of those individuals who were free of this condition in wave (paired sample). incidence rates are reweighted using attrition weights. prevalence and incidence data are reported stratified by age and sex. results: hypertension ( . %; % ci . – . ) and diabetes ( . %; % ci . – . ) are the most prevalent cardiovascular conditions. arthritis now affects . % ( % ci . – . ) of those aged and over, while the two-year incidence of arthritis among this age group is . % ( % ci . – . ). arthritis, osteoporosis and cataracts have the highest incidence rates of non-cardiovascular chronic conditions, with rates of . % ( % ci . – . ), . % ( % ci . – . ) and . % ( % ci . – . ), respectively. approximately . % ( % ci . – . ) of individuals aged and over have fallen in the last year with . % ( % ci . – . ) having had an injurious fall in the last year. conclusion: the burden of chronic disease and falls remains high with hypertension, diabetes, arthritis and osteoporosis being the most prevalent conditions. falls are a major problem for older adults with one in ten now requiring medical attention. references: . cronin et al ( ) physical and behavioural health of older irish adults. fifty plus in ireland : first results from the irish longitudinal study on ageing (tilda). dublin, ireland o mapping health services to meet the needs of an ageing community: the local asset mapping project (lamp) david robinson , gerard boyle , jennifer feighan , chris soraghan , luis dominguez-villoria , darren clarke , jan rigby , stacey lindau , rose anne kenny st. james’s hospital, dublin, ireland; national university of ireland, maynooth, meath, ireland; university of chicago, chicago, usa background: as the world ages the imperative grows for health services to promote healthy, successful ageing. many factors that influence health lie outside the remit of traditional health services. the concept of intersectoral health has been promoted to bridge the gap between broader concepts of health and the medical model. currently, tertiary providers have limited understanding of the ame- nities and services available to patients to promote health and positive health behaviours. similarly, patients report difficulty identifying and accessing services. we conducted an asset-mapping exercise in our hospital catchment to identify health-related assets, and surveyed a selection of those assets. methods: an on-street survey was conducted to record the location, nature, and contact details of every business or service in a defined area. information was recorded using a bespoke geocoding app. s ir j med sci ( ) (suppl ):s –s assets were classified according to a two-tier taxonomy. health- related assets were contacted to identify what services were provided, and asked if they had formal links to other services, the hospital, or the health service executive. results: twenty electoral districts with a population of over , were mapped over weeks. assets were identified. these included social services, public services, sports/fitness services and health services. fifty-six of the health-related assets were surveyed about their ser- vices and their links with other sectors. while there was a broad range of services provided, many said they had no links to either the hos- pital, primary care or the hse. one in four assets said they had no links to any of these sectors. conclusion: there is a broad range of assets in the proximate catchment of a large dublin hospital that may provide a resource to promote healthy ageing. these assets are relatively isolated from each other and from other health sectors. o constructing home over the life course: toward a model of at-oneness kieran walsh , thomas scharf , graham rowles irish centre for social gerontology, nui galway, galway, ireland; graduate center for gerontology, university of kentucky, lexington, ky, usa background: despite the growing evidence base, our empirical and conceptual understanding of what home means in later life remains poorly developed. this is particularly true in relation to a life-course perspective. in this paper we attempt to address this deficit by con- tributing to the spatio-temporal understanding of home. we explore ( ) how older adults construct the experience of being at home; ( ) the role of personal history in evolving constructions of home over the life course; and ( ) the role of a changing environmental context in shaping and modifying constructions of home as people age. methods: empirical data is taken from in-depth interviews with ten older residents of a dispersed rural community in south west ireland, and are complemented by field-notes and contextual information. data analysis employs an inductive team-based approach, drawing on pragmatism and constructivist grounded theory traditions, and uses data and investigator triangulation. results: home was manifest in a taken-for-granted and implicit sense of at-oneness with the local environmental context. this involved the interwoven dimensions of: place of origin; inherited meaning; rela- tional harmony; rhythm and routine; aesthetic functional landscape; and invested effort. the relative importance of dimensions of at- oneness was derived from individual life-course experiences, within and external to the community. conclusions: we present a dynamic life-course model of home as a sense of at-oneness. in the context of recent concern with aging in place, creating age-friendly communities, and culture change in long-term care, such a model provides a target outcome for all concerned with improving indi- vidual well-being and enhancing the places where people age. o socioeconomic deprivation and risk of age- related cognitive dysfunction in older irish adults leane hoey , adrian mccann , helene mcnulty , anne m molloy , conal cunningham , miriam c casey , catherine f hughes , jan e rigby , adrian moore university of ulster, co. londonderry, uk; trinity college dublin, dublin, ireland; mercer’s institute for research on ageing, dublin, ireland; nui maynooth, co. kildare, ireland background: cognitive dysfunction is a common disease of ageing. it is known that socioeconomic status is linked to health but few studies have examined the relationship between socioeconomic status at the area-level and cognitive health. the aim of this study was to investigate the relationship between area-level deprivation and cog- nitive dysfunction among older irish adults. methods: data from a well characterized cohort of , adults aged +, recruited between and to the trinity, ulster and department of agriculture (tuda) cohort study, a large north– south study investigating gene-nutrient interactions and diseases of ageing, was used. cognitive health was assessed using the mini- mental state examination (mmse) and anxiety and depression were assessed using the hospital anxiety and depression scale (hads) and the centre for epidemiological studies depression scale (ces- d), respectively. for both the north and south sub-cohorts, subjects were allocated to a deprivation quintile based on the deprivation score of the area in which they lived before merging of the two datasets. results: mean age was years and % of the cohort was female. greater area deprivation was associated with significantly lower mmse scores, fewer years in education, higher levels of both anxiety and depression and a greater prevalence of smoking and physical inactivity. after controlling for the two strongest predictors of cog- nitive performance (i.e. age and age finished education), greater area deprivation was found to significantly predict early cognitive dys- function (defined as an mmse score at or below ), along with depression and anxiety scores. conclusions: this study found a gradient in cognitive performance by area deprivation and suggests that older people living in areas of greatest socioeconomic deprivation in ireland are at higher risk of cognitive dysfunction. this at-risk group may benefit from targeted resources and strategies aimed at improving modifiable risk factors for cognitive impairment. o irish national dementia educational needs analysis kate irving , paulina piasek , annmarie coen , sophia kilcullen , mary manning dublin city university, dublin, ireland, health service executive, dublin, ireland background: given the projected rise of dementia prevalence, there is an urgent need for up-skilling in dementia support and care in order to improve the lives of people with dementia (pwd) and their carers. a previous dementia education needs analysis (ena) report (hse, ) outlined gaps in dementia training among healthcare staff. the current ena, jointly funded by atlantic philanthropies and the hse, builds upon the previous report and includes an assessment of the information needs of pwd, general practitioners (gp) and commu- nity networks. methods: the methodology guiding this ena embodied three per- spectives; an empirical study adopting a case study framework; a scoping review, and an expert consensus meeting, resulting in a final triangulation and decision on seven priority areas for dementia education. results: based on the seven priority needs the dementia elevator programme (dcu) is developing flexible, person-centred models of education. the education includes modules on: dementia awareness, ir j med sci ( ) (suppl ):s –s s dementia champions (health and social care practice development skills), therapeutic skills, clinical and everyday ethical decision making; dementia awareness for managers and service leaders; skills in responding to memory complaints—targeting health and social care practitioners; and bespoke gp training in partnership with icgp. the targets for this education range from pwd, family carers, public facing services and a wide range of health and social care professionals. conclusions: in highlighting the gaps that exist in dementia skills and knowledge, and in considering models of best practice in dementia training and education, the ena report informs the development of appropriately tailored dementia-related training and education pro- grammes in ireland. gaps were identified in dementia education for pwd from their perspective. there was a positive response and good degree of willingness from communities to engage in dementia up skilling. o mapping an integrated dementia care pathway daniel regan , patrick slevin , james fullam , sarah cosgrave , denis curtin , dermot power , diarmuid o’shea , gerardine doyle university college dublin, dublin, ireland; mater misericordiae university hospital, dublin, ireland; st. vincent’s university hospital, dublin, ireland background: dementia care in ireland is complex and fragmented, incorporating a variety of discrete actors, across multiple settings. in order to map a comprehensive and integrated dementia care pathway (dcp), this study undertook a detailed, bottom-up examination of the key activities undertaken throughout the dementia care ecosystem, including: the community setting, the hospital setting, informal care, and long-term nursing home care, methods: due to the heterogeneity of dementia, a creative and inno- vative method was required to identify a coherent dcp. vignette-based surveying was chosen for this purpose. vignettes are useful when out- comes are ambiguous, long-term or immeasurable, as is the case in dementia. in the current study, vignettes based on patient exemplars (i.e. realistic clinical case scenarios) were developed to represent a ‘typical’ dcp. vignettes were developed to encapsulate mild, moderate, and severe stages of dementia, applied at distinct time intervals: diagnosis ( – months); disease progression ( – months); transition to long- term care (ltc); and finally ltc ( – months). a four-pronged approach was used: . comprehensive literature review . semi-structured interviews conducted with healthcare practi- tioners with an expertise of dementia care in ireland to gain an initial high-level view of the dcp . participant observations (hospital sites) a. – days observations per site . over semi-structured interviews to gain a detailed view of the activities/processes involved in caring for demented patients. confirmatory sessions were conducted to verify and/or modify the dcp. results: a comprehensive dcp through the four key care sites (i.e., community, hospital, patient home, and nursing home) was identified, mapped and confirmed. conclusions: mapping of an integrated dcp through the irish public healthcare system was conducted for the first time. the vignette-based surveying method appears to have been a valid, and importantly, replicable way in which to identify and map this care. o older prisoners in ireland: policy implications of a growing cohort gillian smith trinity college dublin, dublin, ireland background: the annual number of older people (aged over fifty) committed to prison in ireland has more than doubled since (from to in ), representing the fastest growing age cohort among committals. the cost of providing care to older pris- oners is one of the key challenges for prison management and justice departments (aday, ). medication, staffing of care services, escorted transportations of prisoners to hospitals, and adapting the prison environment are costly. estimates indicate that older prisoners are two to three times more expensive to accommodate than their younger counterparts (american civil liberties union, ). methods: this paper explores policy implications of an older prison population in ireland. qualitative interviews were conducted with a senior manager and prison governor in the irish prison service, a senior manager in the irish probation service and a staff member from an advocacy organisation for prisoners and a staff member from an advocacy organisation for older people. results: according to stakeholders, the combination of complex care needs in the ‘older old’ and the high number of sex offenders within the older prison population present distinct challenges to prison management. recent reduced fiscal and personnel resources, and political influence over parole and temporary release decisions are additional constraints in the management of older prisoners in ireland. conclusions: increasing numbers of people aged over fifty are being sent to prison. the demographic and criminological profile of long-term older prisoners challenges existing prison structures and policies in relation to health, sentence management and re-inte- gration. little is known about the needs of older prisoners in ireland, and further research is needed to assess current policy adequacy. o a hard pill to swallow? assessment of swallow function following an acute stroke gabriel beecham, david brennan, colm staunton, nicholas ng, vishnu pradeep, michael cotter, martin mulroy our lady of lourdes hospital, drogheda, co. louth, ireland background: aspiration pneumonia is a common complication in patients presenting with acute stroke. screening for swallow disorders in such patients is critical. the irish heart foundation stroke council guidelines recommend that all patients should be assessed with a validated swallow screening test by an appropriately trained person, within hours of admission. if the screen indicates dyspha- gia, specialist assessment should follow, preferably within hours and not more than hours after admission. the irish national audit of stroke care reported that % of irish stroke patients were screened for swallow disorders within the first hours of admission; % underwent formal swallow assessment by a speech and lan- guage therapist (salt) within hours. methods: we retrospectively reviewed case notes of patients admitted with acute stroke to the stroke unit at a regional hospital between / / and / / . s ir j med sci ( ) (suppl ):s –s results: notes for patients were reviewed. / patients ( %) had a documented swallow screen within three hours of admission. / ( %) were screened on the day of admission. / ( %) were screened within hours. / ( %) underwent salt swallow assessment within hours. / ( %) had no documented swal- low screen during admission. conclusions: this study identified delays in swallow screening assessment for patients admitted with acute stroke. rates are com- parable to the most recent irish national data, but lag significantly behind equivalent statistics for health services in the united kingdom. the results reflect a need for guidance on a suitable, nationally standardized screening tool for use throughout stroke units in ireland. references: . irish heart foundation stroke council ( ) national clinical guidelines and recommendations for the care of people with stroke and transient ischaemic attack. irish heart foundation, dublin . irish heart foundation ( ) irish national audit of stroke care. irish heart foundation, dublin o physical and psychosocial adjustment post-stroke irene hartigan, geraldine mccarthy, josephine hegarty, vicki livingstone school of nursing and midwifery, university college cork, cork, ireland background: stroke survivors may experience a myriad of physical, psychological and social consequences. physical function is an important indicator of clinical outcome. there is a gap in the evidence examining physical and psychosocial adjustment post-stroke. methods: a quantitative cross-sectional, correlational, exploratory study was conducted between april and november . the sample consisted of stroke survivors (n = ) recruited from three hospital outpatient departments, who completed a questionnaire package. the aim of this study was to examine the influence of physical function and other factors on psychosocial adjustment post-stroke. physical function was recorded using two scales, the barthel index and the modified rankin scale (mrs). psychosocial adjustment was measured by the psychosocial adjustment to illness scale (pais). results: the mean age of participants was . years (range – ), over half ( %) of participants achieved the maximum score of on the barthel index. the median score was (iqr: – ). for the modified rankin scale, the median observed was which indicated slight disability (iqr: – ). the total weighted mean (standard deviation) for psychosocial adjustment was . ( . ) indicating a satisfactory level (mean range . – . ). a correlation matrix indicated a strong, positive, statistically signifi- cant correlation was found between physical function and psychosocial adjustment (r = . , p \ . ), indicating that those with better physical functioning had better psychosocial adjustment. the strength of the correlations was strongest between physical function and the dimensions of domestic environment (r = . , p \ . ) and social environment (r = . , p \ . ) in the pais. % and % of the variation in psychosocial adjustment to illness scale was explained by physical function and self-rated health, respectively. conclusion: physical function contributes to psychosocial adjustment post-stroke. however more attention to patients overall perspectives of their health is needed in stroke research given its contribution to psychosocial adjustment. o facilitators and barriers of getting back to active living post-stroke: results of a national survey mary walsh , rose galvin , cliona loughnane , chris macey , frances horgan royal college of surgeons in ireland, dublin, ireland; irish heart foundation, dublin, ireland background: stroke is a major cause of acquired disability, espe- cially in older adults. although acute stroke care has improved, many individuals report dissatisfaction with community re-integration after stroke [ ]. the aim of this study was to document the recovery experiences of community-dwelling persons up to years post-stroke. methods: participants were recruited though stroke support groups nationally, relevant websites, and by community health professionals. an existing validated questionnaire was adapted with permission [ ]. the final questionnaire assessed respondents’ own perceptions of their recovery and community re-integration. univariate analysis was performed to investigate associations across relevant variables. open responses were qualitatively analysed. results: one hundred and ninety-six individuals responded to the survey. family support was the most common reported facilitator of recovery after stroke, described by % of respondents. over half of those who needed help with personal care received it from family only. of those who had a partner, % reported a change to their rela- tionship and % wanted information about intimacy. sixty per cent of the respondents who drove prior to their stroke returned to driving. over half of them adapted their cars or received further training and assessment. changes in leisure activity engagement after stroke were reported by % of respondents. barriers to participation described include the effects of the stroke, psychosocial difficulties, transporta- tion, and others’ negative perceptions. other common facilitators of recovery described were stroke support groups, personal attributes, health professionals, exercise and the home environment. conclusions: although the direct effects of the stroke are important, the return to active living post-stroke is likely a complex process that is facilitated and hindered by many interactive factors related to individuals, social networks and professional support. references: . wood et al ( ) clin rehabil ( ): – . mckevitt et al ( ) uk stroke survivor needs survey. the stroke association, london o frailty and disability across the north and south of ireland: a data harmonisation study siobhan scarlett, bellinda king-kallimanis, jonathan briody, rose anne kenny, matthew o’connell the irish longitudinal study on ageing, department of medical gerontology, chemistry extension building, trinity college, dublin, ireland background: frailty in older adults is recognised as a precursor to overt disability. the prevalence of limiting disability has been found to be higher in older adults from northern ireland (ni) compared to the republic of ireland (roi). this study aimed to construct a har- monised measure of frailty using health surveys from ni and the roi and use it to explore differences in frailty and its relationship to disability across ireland. ir j med sci ( ) (suppl ):s –s s methods: data are from wave of the irish longitudinal study on ageing (tilda) and the health survey northern ireland / (hsni). respondents aged and over were included with , participants in tilda and , in hsni. analysis was conducted separately on each dataset using modified poisson regression models to investigate the relationship between frailty and disability. a frailty measure was successfully adapted from the frail scale using five harmonised indicators for fatigue, resistance, ambulation, illness, exhaustion and low physical activity. participants with , – and c indicators were classified as non-frail, pre-frail and frail, respectively. results: frailty prevalence in hsni was . % compared to . % in tilda, and limiting disability prevalence was . % in hsni compared to . % in tilda. this increased with age and was higher amongst females in both settings. the relationship between frailty and limiting disability was similar in tilda (relative risk (rr) = . , % ci . – . for participants with frailty cri- teria vs ) and hsni (rr . , % ci . – . ). conclusions: this is the first study to define frailty across ireland. frailty was more prevalent in ni compared to the roi and was related to limiting disability in both settings. further research is needed to understand these health disparities across ireland. however, we found that it is feasible to harmonise datasets to perform international comparisons of frailty. o the impact of frailty on post-acute rehabilitation outcomes in older adults lisa cogan, caitriona tiernan, roman romero-ortuno the royal hospital donnybrook, dublin, ireland background: multidisciplinary rehabilitation programmes in post- acute settings can positively influence the pace and extent of return of function after an acute hospital admission. few studies have focused on frailty assessment tools as predictors of rehabilitation outcomes in older adults. our study aimed to fill this gap. methods: the short-term post acute rehabilitative care (sparc) unit, ( beds) provides specialist geriatrician-led multidisciplinary input for patients aged years and over who are medically stable and fit for discharge from acute hospital care. we assessed the cor- relations of the frailty instrument for primary care of the survey of health, ageing and retirement in europe (share-fi on admission: non-frail, pre-frail, frail) we retrospectively measured the following rehabilitation outcomes: length of stay (los) in days, emergency transfer to the acute hospital due to medical destabilisation during rehabilitation, and change in barthel index (bi) (i.e. discharge bi minus admission bi). results: there were admissions to the sparc unit. the most common main diagnosis was fracture or fall ( patients). adjusting for age, share-fi correlated with longer length of stay (non-frail: median days; frail: days; p = . ), higher rate of emergency transfer to acute hospital (non-frail: . %; frail: . %; p = . ), and lower home discharge rate (non-frail: . %; frail: . %; p = . ). while frailty correlated with more disability on admis- sion and discharge, there was no statistically significant difference in barthel index (bi) improvement across frailty categories (all groups had median bi improvement of c points, p = . ). conclusion: the post-acute rehabilitation of the frail is worthwhile but requires more time and access to acute hospital facilities. the frail have a higher medical decompensation risk and we interpret that in the light of their higher medical complexity and intrinsic vulnera- bility, which is a core feature of frailty. o frailty and its association with rehabilitation outcomes: a prospective cohort study of a post-acute frail older population mary nolan , dermot power , jill long , frances horgan cappagh national orthopaedic hospital, dublin, ireland; mater misericordiae and cappagh national orthopaedic hospitals, dublin, ireland; royal college of surgeons in ireland, dublin, ireland background: the establishment of frailty as a predictor of those at risk of adverse outcomes in hospitalised older adults is growing. this study examined the changes in frailty, physical function, quality-of- life and falls self-efficacy of older adults undergoing post-acute rehabilitation. the influence of frailty on participants’ rehabilitation outcomes was also examined. methods: a prospective cohort study of participants attending an inpatient post-acute rehabilitation unit was conducted. assessments included the canadian study of health and ageing: clinical frailty scale (cfs), grip-strength, timed-up-and-go (tug), ten meter walk test ( mwt), elderly mobility scale (ems), tinetti balance and gait assessment, barthel index (bi), the euroqol- d visual ana- logue scale (eq- d-vas) and the falls efficacy scale (fes). all participants underwent routine rehabilitation. results: the mean (±sd) age of the sample was . (± . ) years and the majority were female ( . %, n = ). the median (iqr) los was ( ) days. statistically significant changes from admis- sion to discharge were found in all outcome measures. moderate positive correlations were found between admission cfs and tug (r = . , p \ . ), gait-speed (r = . , p \ . ), los (r = . , p \ . ) and amount of time spent in therapy (r = . , p \ . ). moderate and strong negative correlations were found between admission cfs and tinetti (r = - . , p \ . ) and ems (r = - . , p \ . ) respectively. no rela- tionship was found between the cfs and grip-strength, eq- d-vas, fes or discharge destination. conclusion: frailty on admission was shown to have a moderate relationship with many physical determinants of function, time spent in therapy and los. it is evident that frailty alone does not provide the clinician with a definitive evaluation of an older person’s potential outcome following rehabilitation. current frailty indices are simply one of several indicators of outcome. further research investigating the validity of frailty indicators is required before frailty can be validly utilised as an outcome for elderly rehabilitation. o prediction of fracture leading to hospital admission in community dwelling older adults rosaleen lannon , avril beirne , kevin mccarroll , cathal walsh , conal cunningham , jb walsh , miriam casey bone health unit, mercer’s institute for research on ageing, st james’s hospital, dublin , ireland; mercer’s institute for research on ageing, st james’s hospital, dublin , ireland; dept of biostatistics, trinity college dublin, dublin , ireland background: fracture prevention is a key aim in bone health and osteoporosis management. once a fracture has occurred it is imper- ative comprehensive assessment of risk factors and initiation of appropriate lifestyle and pharmacological measures to reduce risk of further fracture takes place. s ir j med sci ( ) (suppl ):s –s methods: data analysis for this study was obtained from participants in the tuda (trinity, university of ulster, department of agricul- ture) cross sectional study. participants were initially prospectively recruited from community dwelling adults over years attending our bone health unit for dxa (bone densitometry measurement). those included had a t score of - or less i.e. osteopenia or oste- oporosis. a detailed assessment including medical history, fracture history, medication use as well as biochemical tests of serum (oh) vit d and serum pth was carried out. patient records were then assessed for occurrence of further fracture at a later date. results: initially subjects were assessed. of these ( %) had a fracture at index assessment. mean age . ± . years. following a mean follow-up of . years further fracture rate was assessed. over this period only subjects had a further fracture necessitating hospital admission with subjects having further fractures. ( %) of these had a previous fracture. new fractures were generally fragility with exception of one subject with two atypical femoral fractures and another with injuries from an assault. in this small subgroup mean t-score spine was - . ± . and mean t-score hip - . ± . compared to a mean t score spine - . ± . and mean t score hip - . ± . in whole group. this difference was not statistically significant. conclusion: these initial results suggest previous fracture may be more predictive of further fracture risk than t-score at a given time. further analysis of biochemical profile and medical history may pinpoint other risk factors. o an exploratory study of club-based sports participation by older people in ireland, australia and japan yoshio oro trinity college dublin, dublin, ireland background: although older people’s sports participation is a con- spicuous trend in the world today, most research on older people’s physical activities has concentrated on physiological aspects, rather than socio-gerontological aspects, with little emphasis given to the dimensions of older people’s sports activities. this research explored the poorly understood phenomenon of older people’s participation in the club-based sports activities in international contexts (ireland, australia and japan). given their popularity amongst older people, the focus of the research was on golf (a low-intensity sport) and swimming (a high-intensity sport). methods: this research employed qualitative research methods involving face-to-face interviews with sports body organisers and focus groups with older sportspeople. forty-one sports body organ- isers took part overall; sportspeople, including women and men, participated in the research. results: this research demonstrated that older people keep active in sporting activities at their sport settings in their later life. the key findings were: . for older sportspeople, sports participation was their ‘life force’ despite their age- or sport-related injuries. . sports clubs were good settings for older sportspeople to enhance their social networks via comradeship, which could have an influence on their ability to age ‘successfully’. . older participants in this research envisaged keeping the same aptitude for sporting activities as they age, and even into their ‘fourth age’. conclusion: it was acknowledged that sports participation benefited older participants in this research with various positive outcomes such as physical health and mental wellbeing, driven by virtuous cycle in their life courses. the research hopes to enhance not only govern- mental but also public awareness of the necessity of making older people more physically active through sports activities. o ‘‘words open windows’’: older women’s experiences of adult literacy services catherine o’dare trinity college, dublin, ireland background: extensive research pertaining to older populations has paid insufficient attention to understanding the educational and life- long learning needs and experiences of older adults. this paper adds to this body of literature by investigating the experiences, motivations and outcomes of adult literacy training among older women who are former students of the adult literacy services (als) in ireland. methods: a social constructivist approach, using the principles of grounded theory methodology, was selected as best suited to providing insights into former literacy students’ experiences. an understanding of the experiences, motivations and outcomes is derived from participants’ own perceptions and was captured through in-depth semi-structured interviews. in keeping with a constructivist approach, adult education policy is used as a lens through which to investigate how the learners’ experiences are shaped by social forces in contemporary irish society. results: the older learners described a productive, positive and enjoyable experience in als, with outcomes meeting their utilitarian and expressive needs. increased self-esteem, confidence and freedom from the stigma of being an older adult with literacy difficulties were additional outcomes that the participants valued highly. an interesting and unexpected phenomenon emerged, in that the majority of par- ticipants viewed partaking in als as a stepping stone to the fulfilment of long-held hopes and aspirations beyond utilitarian needs. conclusions: the findings indicate that older former adult literacy learners are agentic and flourishing actors. the importance of adult and continuing education is articulated as the ‘vital cement to building a society in which everybody has the capacity to achieve their goals’ (parsons and bynner, : ). this paper contributed to the under- standing of the fact that the ‘everybody’ referenced in this quote includes older women overcoming stigma, flourishing and aspiring to long-held ambitions in later life, through the stepping stone of literacy tutorship. reference: . parsons s, bynner j ( ) illuminating disadvantage: profiling the experiences of adults with entry level literacy or innumeracy over the life course. london: nrdc institute of education o exploring perceptions of ageing and health amongst mid-life women in connemara alison herbert national university of ireland, galway, ireland background: this paper seeks to address gaps in research knowledge concerning the ageing of mid-life women in rural connemara. in , – year-old women comprised % of ireland’s popula- tion. this proportion is predicted to rise to % by , making mid-life women a significant population sector. methods: adopting a qualitative research design, in-depth, semi- structured interviews were conducted over months with women ir j med sci ( ) (suppl ):s –s s aged – years, living across connemara. a diverse, purposive sample was recruited through stakeholders and personal contacts, snowballing, and the media. participants varied according to age, socio-economic status, marital status, residence, and nationality. data were analysed using an adaptation of constructivist grounded theory [ ]. results: categories of primary concern to participants included: ageing and old age; health and well-being; work and finance; social relationships; and attachment to place. patterns of difference and similarity emerged across each category regarding participants’ ages and socio-economic backgrounds. the data highlight mid-life women’s perceptions of living during a time of significant transition. this supports research evidence, which suggests that mid-life repre- sents a crossroads in life, and that the cornerstones for a fruitful late life are established in the middle years. [ ] conclusions: emerging data reveal that desired physical and mental health in later years is of the highest significance. mobility and autonomy in old age, even if financially compromised or socially isolated, is the epitome of high life quality. almost all participants in the sample associated old age with physical and/or mental infirmity and increased dependency, leading participants to seek preventative health measures, including physical/mental exercise, careful nutrition, and positive attitude, which may achieve autonomy in later years. references: . charmaz k ( ) constructing grounded theory: a practical guide through qualitative analysis. sage, london . hockey j, james a ( ) social identities across the life course. palgrave macmillan, hampshire o attitudes of first year medical students to ageing and to older people simon piggott , christopher thong zi yi , elizabeth macken , ben mulholland , caitriona mckennedy , nur anis atika zainal abidin , nur farhana ahmad hourmain , aisling o’reilly , triona clerkin , aoife kilby , stephanie robinson , michelle canavan , eamon mulkerrin , martin o’donnell , first year nuig medicine nursing home special study module group national university of ireland, galway, ireland; university hospital, galway, ireland; clinical research facility, national university of ireland, galway, ireland background: previous research shows that attitudes among medical students towards older people are moderately positive but knowledge of ageing is poor, with low levels of interest in geriatric medicine as a specialty [ ]. this study aimed to evaluate attitudes of first year medical students to older people. methods: cross-sectional survey of first year medical students. they were asked their age, gender, nationality, whether they had ever visited a nursing home (nh) and their thoughts after visiting. they were asked to rank statements about successful ageing in order of importance and to complete the university of california, los angeles (ucla) geriatrics attitudes scale (gas) which measures agreement/ disagreement with statements about older people. higher mean scores indicate more positive attitudes. results: of students, % ( ) were male and % ( ) were irish. mean age was . years. % ( / ) had visited a nh. of these, % ( / ) worried about lack of dignity in the nh and requiring nh care in the future. maintaining physical/mental inde- pendence and having a good family/social life were most important regarding successful ageing. mean gas score was . (sd . ) which was lower than students at a similar stage in other universities (us . , singapore . ). there was no significant difference in mean gas scores between males and females ( . vs . , p = . ) or irish and non-irish students ( . vs . , p = . ). conclusions: we found a generally positive attitude towards older people in this study. with an ageing population, improving attitudes of medical students to older people early in their undergraduate education is important. introduction of the core concepts of geron- tology and geriatric medicine at an early stage will influence future practice and career choices. reference: . fitzgerald jt et al ( ) relating medical students’ knowledge, attitudes, & experience to an interest in geriatric medicine. gerontologist : – o food enjoyment is associated with nutritional status among irish older adults living alone joanna mchugh, olga lee, niamh aspell, emma mccormack, michelle loftus, sabina brennan, brian lawlor neil program, institute of neuroscience, trinity college, dublin, ireland background: malnutrition impacts older irish adults and is associ- ated with many unfavourable outcomes, such as physical and cognitive decline. older adults living alone may be particularly vul- nerable. in this group, many factors, such as access to transport, mobility, health status, changes to taste and smell, metabolic changes, and medication use may impact nutrition status. we wanted to investigate whether self-reported enjoyment of food would be indic- ative of nutritional outcome in this population. methods: as part of the relate study, cross-sectional information was collected on nutritional status (using the nestle mini-nutritional assessment scale), food enjoyment (using the food enjoyment scale; vailas & nitzke, ), and health status (using the health utilities index; horsman et al., ), among adults ( male) living alone (age range – , mean age . ). multiple regression analyses were performed on the data with nutritional status as the dependent variable and food enjoyment, health status, age, and gender as predictors. results: the regression model was found to be significant [adj. r = . , f , = . , p \ . ]. of the predictors, only food enjoyment was found to be a significant predictor of nutritional status [b = - . , p \ . ]. conclusions: food enjoyment, but not health status, predicts nutritional status among older adults living alone. our finding accords with previous research which states that nutritional status can be impacted among older adults due to changes in chemosensory function as well as diminished appetite. this finding has significant implications for prevention of nutritional decline among older irish adults, since efforts may be most beneficial in the promotion and facilitation of enjoyment of food. o risk instrument for screening in the community (risc): predicting adverse outcomes in older adults christine fitzgerald , rónán o’caoimh , elizabeth healy , elizabeth o’connell , gabrielle o’keeffe , una cronin , eileen o’herlihy , nicola cornally , roger clarnette , sarah coveney , francesc orfila , constança paúl , marina lupari , d. william molloy s ir j med sci ( ) (suppl ):s –s centre for gerontology and rehabilitation, ucc, cork, ireland; centre for public health nursing, ballincollig and bishopstown, cork, ireland; centre for public health nursing, mahon and ballintemple, cork, ireland; health service executive south, ireland; faculty of medicine, dentistry and health sciences, university of western australia, australia; idiap jordi gol, barcelona, spain; icbas, university of porto, porto, portugal; northern health & social care trust, northern ireland, uk background: the growing older population, faced with shrinking resources, poses significant challenges for health services (connell and pringle, ). valid and reliable tools to predict adverse outcomes (ao) hospitalisation, institutionalisation and death, in older adults, would facilitate targeting older adults at greatest risk of ao. this paper describes the predictive validity of the risk instrument for screening in the com- munity (risc*), developed to screen older adults for risk of ao. methods: public health nurses recorded demographics and scored the risc between march and august , and again in march , in a sample of community dwelling older adults. the risc assessed the effectiveness of the caregiver network, mental state, adl and med- ical problems, and provided global risk scores from one to five, for each ao. the incidence of hospitalisation, institutionalisation and death were recorded for the population in the period of follow up, to determine the predictive validity of risc. results: at baseline, the cohort (n = ) had a mean age of , with % females. at baseline, were at low risk, at medium risk and at high risk of death. at follow up , and %, respec- tively, had died. at baseline, were at low risk, at medium risk and at high risk of nursing home placement. at follow up, , and % had been placed in nursing homes. a baseline, were at low risk, at medium risk and at high risk of hospitalisation. at follow up, , and % had been hospitalised. conclusions: the risc predicted all three outcomes, but death and in- stitutionalisation better than hospitalisation. the next phase matches subjects at medium and high risk, and randomly assigns half to control, receiving standard care, the others to comprehensive geriatric assessment. subjects will be followed to determine the effects of the intervention on ao. reference: . connell p, pringle d ( ) population ageing in ireland: projections – in o’shea, e. and conboy, p. eds planning for an ageing population: strategic considerations, report no. , pp. , national council on ageing and older people, dublin o do we tell gps what they need to know? a quality assessment review of gp correspondence from a medicine for the elderly outpatient clinic avril m beirne, aisling byrne, david j robinson department of medicine for the elderly, st james’s hospital, dublin , ireland background: the medicine for the elderly (mfte) department in a dublin hospital operates a busy outpatient service, with the majority of referrals from general practitioners (gp). referrals relate to many different clinical concerns including memory. communication between hospitals and the community will be vital with the changing healthcare system, particularly in managing memory and dementia. the aim of this review is to evaluate the quality of new patient memory assessments and communication with gps. method: we reviewed notes and correspondence relating to new patient attendances to one outpatient service over a months period. six clinics were included and information was gathered specifically relating to cognitive/memory referrals. results: new patients attended over months, with a mean age of . years (range – years). the most common reason for referral was memory complaints (n = , . %). the majority of letters to gps documented the mini mental state examination (mmse) score (n = , . %). however, documentation of education history (n = , . %) and occupation (n = , . %) were poorly recorded, which are of relevance in interpreting performance on cognitive tests such as the mmse. rarely were enduring power of attorney (epoa), n = ( . %) or patient preference regarding diagnosis disclosure n = ( %) discussed. the majority of new patients referred for memory assessment were given further review appointments, n = ( . %), the remainder were discharged to the care of their gp ( . %) or referred to the memory clinic for further assessment ( . %). in % (n = ) of letters a clear plan was not documented. conclusions: frequently important information relating to memory assessment and management plans were poorly communicated to gps. it is imperative that appropriate and timely information is communicated to referring doctors. as many gp trainee and junior doctors rotate through mfte departments, we must take the oppor- tunity in developing their skills in geriatric assessments including appropriate cognitive assessments, diagnosis and treatment. o the irish hip fracture database: results from the preliminary report louise brent , emer ahern , conor hurson university hospital waterford, waterford, ireland; st. luke’s hospital, kilkenny, ireland; st. vincent’s hospital, dublin, ireland in the first preliminary report published by the irish hip fracture database in february which included aggregated data from eight hospital sites the overall results provided a base from which it is anticipated we can achieve incremental improvements in all aspects of hip fracture care similar to what has been achieved in the uk (nhfd). to date the hse are measuring time to surgery, and in-hospital mortality and in addition to that the ihfd is measuring time of admission and transfer to ward, time to surgery within h, pressure ulcer prevention prevalence, geriatric input, bone protec- tion and falls prevention. % of patients were admitted to an orthopaedic ward within hours, % had surgery within hours, % were seen pre-operatively by a geriatrician, % developed a pressure ulcer, % had a bone health assessment and a further % were referred for outpatient follow-up, and % had a specialist falls assessment. in addition we know that % of patients were female, % of patients were admitted from home, % mobilised unaided prefracture, the majority of patients were either asa grade or ( %), % of patients suffered an intertrochanteric fracture and the most common type of fixation was a dynamic hip screw ( %), the average length of stay was days and % of patients were discharged directly home from hospital (ihfd report, ). conclusions: using evidence based standards; audit and feedback as well as an integrated care pathway specifically for hip fractures will enhance and support the work already going on in individual sites to care for hip fracture patients. each site will be given regular feedback about their data. in addition the ihfd will continue to produce an annual report and provide feedback throughout the year to all the participating units. ir j med sci ( ) (suppl ):s –s s o human factors and affinity: national falls prevention and bone health project irene o’byrne-maguire state claims agency, dublin, ireland background: affinity (activating falls and fracture prevention in ireland together) aims to prevent harmful falls amongst persons years and older, enhance the management of falls and improve health and wellbeing. human factors examines the relationship between human beings and the systems with which they interact by focusing on improving efficiency, creativity, productivity and job satisfaction, with the goal of minimizing errors. a failure to apply human factors principles is a key aspect of most adverse events in health care. methods: a literature review was carried out to explore how human factors non-technical skills can enhance the safety and efficiency of affinity’s operations, reducing the likelihood of error and conse- quently the risk of adverse outcomes. results: non-technical skills of relevance to affinity include situational awareness, decision making, communication, team work- ing, leadership, managing stress and coping with fatigue. uncertainty within the hse regarding roles, responsibilities and relationships is making it difficult for affinity to build commitment and accountability. team working is critical to the implementation of affinity’s integrated service delivery model. distributive leader- ship will contribute to the overall success of affinity. a failure to cope with stressors can result in work errors, reduced productivity, feelings of discomfort or ultimately even illness of individuals and poor performance of teams or organisations. coping with fatigue is a feature of affinity given the working patterns of doctors, nurses and other staff members. conclusions: human factors non-technical skills will need focussed attention if the vision and aims of affinity are to be realised. factors that are known to impact non-technical skills, such as stress, fatigue, task demands, time pressures and levels of constraints need to be managed at individual and organisational levels. the promotion of human factors principles will enable affinity to design safer sys- tems of care to help prevents errors and mitigates their effects. o alert chart-improving communication within the mdt & reducing risk of falls eimear horan, diarmuid o’shea, catherine mcloughlin, ashling kinahan st. vincent’s university hospital, dublin, ireland background: falls and fractures in ireland cost over € million and it is estimated that this cost will escalate to € billion by . the nice guidelines: falls highlight that the key areas for falls prevention are: identification of potential fallers; intervention to improve balance and mobility; communication and education of patient/family/carers. in order to identify potential fallers and to improve communication within the multi-disciplinary team-also with families and patients-a pilot of alert charts was proposed. method: a pilot of the use of alert charts was performed on a bedded care of the elderly ward (april ) for all patients who were assessed by physiotherapy. this ward has a mixture of general medical and stroke patients. alert charts give a clear message of what level of assistance is required for transfers and mobility for the patients. a follow-up questionnaire was issued to physiotherapists, nurses and healthcare assistants (hcas) to identify their opinion of alert charts. results: all the staff surveyed found the alert charts easy to see and understand. those surveyed felt it improved handover from physio- therapy to nursing staff and between nursing staff/hcas. three of the nurses surveyed commented that it reduced manual handling risks when there was a clear indicator over the bed of the assistance required. the physiotherapists suggested that bed mobility should be included on the alert chart. conclusion: the pilot study received positive feedback from nursing and physiotherapy staff as an excellent form of communication between disciplines about patients’ current mobility status. changes that were suggested have been done and the alert charts are now being trialled on the acute medical unit and on the coronary care unit. we will repeat the questionnaires in these areas to also include families and look at falls rates in these areas before and after the trial. o resource utilisation in older patients presenting with falls to the emergency room patricia hall , jaspreet bhangu , ciara rice , geraldine mcmahon , rose ann kenny st. james’s hospital, dublin, ireland; trinity college, dublin, ireland background: the cost of falls and falls related injuries is estimated to rise to over € billion euro annually in ireland by . effective treatment and prevention, underpinned by valid research is essential to healthcare policy and resource allocation. the irish longitudinal study on ageing (tilda) has shown that almost % of the pop- ulation over had an injurious fall in the previous year. the objective of this study was to examine resource utilisation by patients presenting to the emergency department (ed) with falls and falls related injuries. methods: a single centre, prospective, observational study was conducted over a month period. ed patients over years of age, recorded as having suffered a fall, collapse, syncope, or an injury related to a fall were included in the analysis. electronic records were reviewed to examine the resources utilised. results: patients were studied; ( %) required admission. the median length of stay for admitted patients was . days (range – . ). the majority of patients had presented on more than one occasion to the ed in the previous year. x-rays were performed in ( %) patients; ( %) had blood tests performed; a ct scan was performed in ( %) patients; ( %) patients had allied health professional referrals and ( %) patients were referred for further medical review. the mean age was years (range – ). patients over the age of years were more likely to require admission, with a longer number of bed days and greater number of investigations performed. conclusions: falls represent a significant health problem in older patients and are associated with significant resource utilisation in hospital admission, diagnostic and treatment costs. opportunities to impact on future falls risk should be embedded in all contact points of the health service. s ir j med sci ( ) (suppl ):s –s o is low skeletal muscle mass synonymous with sarcopenia? edric leung , fiona o’sullivan , margaret o’connor , declan lyons , catherine peters , grainne o’malley , jean saunders , eileen humphreys graduate entry medical school, university of limerick, limerick, ireland; division of ageing and therapeutics, university hospital limerick, limerick, ireland; department of sociology, university of limerick, limerick, ireland; statistical consulting unit, university of limerick, limerick, ireland background: sarcopenia is a syndrome characterized by progressive and generalized loss of skeletal muscle mass and strength, associated with physical disability, poor quality of life and death. criteria include both low muscle mass and low muscle function. this cross sectional observational study ascertained the prevalence of low muscle mass in an independent elderly population and assessed self- reported physical and mental health. methods: community-dwelling older people without functional impairment (barthel = ) completed the short form health sur- vey, a comprehensive clinical assessment and a full body dual-energy x-ray absorptiometry (dexa) scan. skeletal muscle mass index (smi = total appendicular muscle mass/height ) was calculated. low muscle mass was reflected by an smi less than two standard devia- tions below the sex-specific mean of a healthy young adult population; \ . kg/m (males) and \ . kg/m (females). spearman’s corre- lation coefficient was used to analyze an association between smi and other health measures. results: median age was years (range – ). mean smi was . kg/m (sd . ) in males and . kg/m (sd . ) in females. . % of females and . % of males had a low smi. smi and age were weakly negatively correlated (p = . ). in females, higher smi was moderately correlated with increasing number of comor- bidities (r = . , p = . ). smi had no correlation with number of medications, self-reported vitality and self-reported physical health. conclusion: reduced skeletal muscle mass is a key diagnostic feature of sarcopenia and is also independently associated with functional impairment and disability. however, in independent elderly subjects, low muscle mass does not equate with ill health or reduced self- reported health. our study suggests that there is a latent asymptomatic period for those who are likely to be predisposed to sarcopenia and impaired functional reserve in the future. targeted physical inter- vention might be most effective at this stage while people maintain functional independence. o making it better or worse? organisational influences on person-centred care ann coyle , kathy murphy , eamon o’shea nuigalway, galway, ireland; health services executive, louth meath primary care services, ireland background: the term ‘person centred care’ is used widely in health and social care discourse and is commonly employed in the articu- lation of policy, both at governmental and professional level. the concept, as it relates to older people in residential care, challenges traditional medical and task-orientated processes and promotes a shift in emphasis to holistic, collaborative, relationship-based care envi- ronments. while person centred care has become a watchword for good quality of care and quality of life, problems have been reported in relation to its implementation and sustainability. methods: institutional ethnography was chosen to explore the everyday living routines of older people in residential care and the organisational practices that influence those routines in three public residential care facilities in the republic of ireland. the study explored the everyday life of these residential settings focusing on the implementation of person centred care and then connected this everyday life to the organisational structures of professional practice, human resource management and regulation. mapping these organi- sational practices to the everyday lives of residents allowed the disjuncture between the espoused principles of person centred care and the organisational policies and practices to be explored. results: the findings revealed that while some elements of person centred practice have been implemented, it is yet to be embedded in organisational practices in a way that would change the nature of relationships, shared decision-making or meaningful activity between residents, relatives and staff. conclusions: these findings warrant the need for organisational and policy changes that give primacy to the implementation of person centred care, and rebalance of power in order to create a level playing field on which to develop interdependent communities within resi- dential care. o using ‘‘communication ramps’’ to enable participation in a survey and increase response rate julie scott, olivia sinclair, marie haughey, orla boyle, martina o’connor, andrea caffrey the royal hospital donnybrook, dublin, ireland background: the ‘‘national standards for safer better healthcare ’’ state patient feedback plays a key role in ensuring a healthcare service is person-centred and effective. surveys are used to collect such opinions, however, low response rates raise concern about their validity. patients with communication difficulties (approximately % over years group for this facility) are often excluded from surveys. method: communication accessible documents are used in the healthcare settings but currently no adapted patient surveys are widely used. the ‘‘picker institute questionnaire’’ ( ) was adapted to this facility’s setting. a modified version was then created using com- munication access principles. inpatients who had been on the rehabilitation wards for at least weeks were given the survey—those with communication difficulties received the modified version. if a patient’s primary speech and language therapist (slt) deemed the patient still not able to access the modified survey, a slt (not involved in the patient’s management but briefed in their communi- cation) provided supported conversation to enable participation. the response patterns for the groups (communication impaired and others) were compared. results: the response rate across rehabilitation wards % (n = ) of which % increase was due to use of communication accessible version. on stroke rehabilitation ward response was % (n = ) of which % increase was due to use of the communication accessible version. themes highlighted were comparable for both groups. discussion: using communication accessible methods increased survey response for this facility. on the stroke ward (higher preva- lence and severity of communication difficulties) enabling active participation for those with communication impairments significantly increased the return rate. despite known limitations of patient feed- back surveys such information will allow this facility to develop ir j med sci ( ) (suppl ):s –s s quality improvement strategies to optimise patient care and satisfaction. reference: . sizmur s, redding d ( ) core domains for measuring inpatient’s experience of care. picker institute, europe o dysphagia and pneumonia in nursing home residents: which side are you on? colette gill, jonathan o’keeffe, joseph browne, graham hughes, diarmuid o’shea, fionnuala duffy st. vincent’s university hospital, elm park, dublin , ireland background: pneumonia is the second most common infection and the leading cause of death among nursing home residents (nhr). previous studies have reported that right-sided pneumonia is more indicative of aspiration. minimal research has been completed on this topic. the main study aim is to investigate if right sided pneumonia is more indicative of aspiration/dysphagia in nhr admitted to an acute hospital. methods: a retrospective evaluation of nh residents admitted to an acute hospital with pneumonia was completed over a month period (october –march ). inclusion criteria: nhr over years admitted with pneumonia and were referred to speech and language therapy (slt). data was analysed quantitatively using descriptive statistics and spss. results: nhr were admitted during the study period. resi- dents were included, with a mean age of . years (± . years, range – ) and mean barthel index (bi) of . (± . ). . , . and . % of patients presented with left, right and bilateral pneu- monias, respectively. overall prevalence of dysphagia was . % with no statistical significance irrespective of pneumonia side. mor- tality was . % in this cohort compared with . % in the overall group of nhr admitted in the study period (p b . ). this was more statistically associated with lower bi’s (p = . ), longer length of stay, new dysphagia and a history of cognitive impairment (p = . ). all deaths were reported in those with a new/worsening dysphagia. all participants had a clinical dysphagia assessment car- ried out by slt, while % also had a videofluoroscopy. conclusion: new onset dysphagia is a poor prognostic indicator and is associated with higher mortality in this frail elderly group. this study supports the conclusion that new dysphagia cannot be distin- guished by the side of pneumonia presentation. all pneumonias should be considered for slt assessment irrespective of pneumonia side. the study is continuing prospectively. o multidisciplinary team (mdt) approach in healing a grade four pressure ulcer in an octogenarian patient with end stage dementia catherine dunleavy, tomasz tomasiuk, rosamma jacob tara winthrop private clinic, dublin, ireland background: the aim of this case report is to illustrate the factors that facilitated the healing of a large grade four pressure ulcer on a resident with end stage dementia who was transferred from hospital to a long term care facility (ltcf) methods: this case study reviews the conservative management of an year old bedbound patient scoring mmse , must , weight . kgs, barthel , waterlow post discharge with a large grade four pressure ulcer on the sacral region measuring . cms in length, cms width . – cms depth. medical records both pre/post dis- charge were reviewed to determine the contributory factors to successful wound healing. it was noted a key nurse was assigned with a post graduate qualification in tissue viability (tvn) to monitor the wound. diet and fluids were modified to increase the calorie/protein intake following dietetic review. speech and language therapist (salt) review highlighted thickened fluids were required as patient’s swallow deteriorated post discharge. strict two hourly repositioning recorded in live time and full support alternating airflow mattress was maintained. wound did not require antibiotic therapy at ltcf. photographic evidence of the healing process recorded. results: weight increased by . % and wound is grade one months later. conclusion: healing a large grade four wound in a patient with end stage dementia can be achieved with conservative management. successful healing was attributed to the collaborative work by the mdt (general practitioner, tvn, salt, nurses and dietician). continuity of care and the consistent approach by the mdt were identified as key components in wound healing. this report proved that end stage dementia patients retain the ability to heal large wounds, achieving this may improve quality of life and reduce the cost of care. the value of mdt input post discharge requires recognition and funding. o the use of adjunct therapies for chronic wound management in older adults in a teaching hospital julie jordan-o’brien , stuart lee , daragh moneley , ciaran donegan tissue viability service, beaumont hospital, dublin, ireland; department of geriatric and stroke medicine, beaumont hospital, dublin, ireland; department of vascular surgery, beaumont hospital, dublin, ireland background: in ireland, an estimated % of the population suffer from chronic wounds. approximately € million/annum is spent on the provision of wound care. this expenditure is expected to rise due to increasing healthcare costs, an aging population and associated chronic medical conditions. this study aimed to describe the use of adjunct therapies namely versajet hydrosurgery, topical honey and negative pressure wound therapy (npwt) in wound management for patients [ years in a large academic teaching hospital. methods: a retrospective case series was conducted from january to may using patient medical records. data on patient demographics, comorbidities and wound type were collated. treat- ment modality was determined in a multidisciplinary team setting involving the tissue viability service, vascular and gerontology teams. results: data were available for patients. males predominated ( %, n = ), with diabetic foot ulcers accounting for % (n = ) of cases. diabetes, underlying cardiovascular disease and smoking were identified as factors for poor wound healing (n = ). versajet was used successfully for wound debridement in / patients ( patients required amputation and another needed further surgical debridement). topical honey application was used success- fully in four patients with venous leg ulcers to eradicate mrsa under compression therapy. npwt was used to treat two grade sacral pressure ulcers (one of which required maggot therapy prior to s ir j med sci ( ) (suppl ):s –s commencing npwt), four diabetic foot ulcers (all of whom received prior versajet hydrodebridement) and dehisced abdominal wound. conclusion: debridement is an essential component of wound management as it maximises the healing potential of remaining healthy tissue. the use and type of adjunct therapies depends on patient tolerance, anatomical location of wound and the extent of debridement required. this series demonstrated the effective use of adjunct therapies in an older population. o irish national audit of dementia care in acute hospitals suzanne timmons , emma o’ shea , anna de siun , paul gallagher , sean kennelly , denise mcardle , patricia gibbons , desmond o’neill university college cork, cork, ireland; trinity college dublin, dublin, ireland; quality and patient safety directorate (audit services), ireland, ireland background: admission to an acute hospital can be distressing and disorientating for a person with dementia, and is associated with cognitive and functional decline. the first irish national audit of dementia care in acute hospitals, in , audited criteria relating to care delivery known to impact on people with dementia admitted to hospital. methods: thirty-five acute public hospitals underwent four linked audits: healthcare record review ( charts/hospital); hospital organisation; and ward organisation and environmental ( – wards/hospital, total wards). in total, healthcare records were reviewed. inclusion criteria included a recorded hospital in-patient enquiry diagnosis (primary or other) of dementia, and a length of stay greater than days. all auditors received comprehensive training. results: most hospitals ( %) have no dementia care pathway. thirty-five percent of people with dementia admitted from home were discharged to residential care (average length of stay days). the majority of wards have good access to liaison psychiatry, geriatric medicine, occupational therapy, physiotherapy, and palliative care, with more limited access to liaison psychiatry of old age, psy- chology, and social work. two-thirds ( %) of hospitals reported standardised assessment of functioning is carried out on all patients, but such an assessment was recorded for only % of patients. only % of patients had a mental status assessment recorded, and % had screening for possible delirium. deficiencies were also noted in staffing levels and training— % of hospitals included dementia awareness in staff induction programmes and no hospital had man- datory dementia awareness education for staff. conclusion: this audit showed discrepancies between guidelines (where they existed) and practice within hospitals, and poor multi- disciplinary assessment across several domains. areas of good practice are also highlighted. recommendations are outlined for the improvement of dementia care in acute hospitals. o changing patient demographics and diagnostic profiles attending a national memory clinic: a retrospective review avril m beirne, irene bruce, robert coen, kevin mccarroll, david j robinson, brian a lawlor, conal j cunningham mercer’s institute for research on ageing, st james’s hospital, dublin , ireland background: the national memory clinic has been in operation for many years and has witnessed a changing profile of patients and cognitive presentations. with developments in investigations and criteria for diagnosis of neurodegeneration and mild cognitive impairment (mci), we sought to evaluate how these impacted on patient profile and diagnosis attending our service. methods: we reviewed all patient visits to our memory clinic to date. age at presentation, gender, cognitive test scores; mini mental state examination examination (mmse), clinical dementia rating scale (cdr) and diagnosis were recorded. visits were subdivided into three subgroups based on year of presentation: interval one: – , interval two: – and interval three: – . results: there were , visits in total. in interval one there were visits (subjects, n = ). patients were older and more cogni- tively impaired with a mean age . years ( . – . ) mean mmse . and mean cdr . ( – ). alzheimer’s disease (ad) was diag- nosed in ( %) visits, mixed disease in ( %), frontotemporal dementia (ftd) in ( . %) and age related mem- ory changes in ( %). in interval two there were , visits (n = , ), mean age . years, mean mmse . and mean cdr . . ad was diagnosed in , visits ( %), mixed in ( %), mci in % and ftd in . % of visits. in group three there were , visits (n = , ); mean age years ( – . ), mean mmse . and mean cdr . . ad was diagnosed in %, mixed in %, , visits ( %), and ftd in %. conclusions: over time patients attending are younger and less cognitively impaired. in groups two and three mild cognitive impairment was increasingly diagnosed and this reflects the devel- opment of criteria by peterson et al. and also that patients are being referred and attending earlier with cognitive concerns. reference: . petersen rc, smith ge, waring sc et al ( ) aging, memory, and mild cognitive impairment. int psychogeriatr suppl : – o audit of early clinical diagnosis of dementia incorporating fdgpetct scanning david middleton, emma cunningham, tom lynch, ap passmore belfast trust, belfast, uk background: the accurate early diagnosis of dementia presents an ongoing challenge to clinicians. the national institute for clinical excellence (nice) guidelines recommend the utilisation of -fluorodeoxyglucose positron emission tomography with computed tomography (fdg petct) to aid the diagnosis of dementia when alternative functional imaging (hmpao spect) is unavailable and in doing so cite the limited availability and expense of fdgpetct. fdgpetct has subsequently been incorporated into the revised diagnostic criteria for alzheimer’s disease. our centre has been providing fdgpetct, on specialist request, for nearly seven years, with over , scans performed to date. methods: the first patients referred for fdgpetct from a single memory clinic were identified. electronic clinic letters with initial and follow up clinical data, including mini mental state examination (mmse) scores, were accessed and fdgpetct reports reviewed. results: patients underwent scanning between / / and / / . clinic letters were accessed in may with an average follow-up time from scanning to last clinic attendance of months. details had ir j med sci ( ) (suppl ):s –s s been entered twice for two patients and two scans were unreportable due to hyperglycaemia. of the remaining scans, were reported as positive, that is, in keeping with a diagnosis of dementia, negative and indeterminate. of those patients with positive scans had a diagnosis of dementia at follow up, four, mild cognitive impairment (mci), one, depression and follow-up data was unavailable for four patients. of the patients with reports not felt to be in keeping with dementia, were subsequently felt at follow up to have progressed to a dementia, the diagnosis was unclear for two patients, had mci, five, no cognitive impairment, and six lost to follow-up. conclusions: even with access to a recognised functional imaging biomarker accurate early clinical diagnosis, and differential diagnosis, of dementia remains challenging. o opinions towards a consensus on use of medications in advanced dementia rónán o’caoimh , nicola cornally , eileen o’herlihy , yang gao , una cronin , sarah coveney , roger clarnette , ciara mcglade , william molloy centre for gerontology and rehabilitation, st finbarr’s hospital, cork city, ireland; fremantle hospital, fremantle, australia; mallow general hospital, mallow, co cork, ireland background: the management of medications in persons with dementia presents challenges for healthcare professionals. there is a lack of consensus in the prescription of medications in advanced dementia. given this, the objective of this study was to investigate the prescribing practices and attitudes of healthcare professionals at dif- ferent stages in their careers, across four different countries: ireland, canada and australia & new zealand (anz). methods: we conducted a survey of practitioner’s opinions on the management of a range of medications in advanced dementia, using a vignette. choices were to ( ) continue ( ) stop now or later (discontinue) the medications that were prescribed for a person with advance dementia living in long-term care. results: in total, healthcare workers from ireland (n = ), canada (n = ), and australia/new zealand (n = ) completed the ques- tionnaire, response rate %. the sample included consultants, non-consultant hospital doctors, general practitioners and others (nurses, pharmacists, and medical students). most felt that statins ( %), bisphosphonates ( %) and cholinesterase inhibitors ( %), should be discontinued. thyroid replacement ( %) laxatives ( %) and paracetamol ( %) were most often continued. significant differ- ences were seen based on training, with respondents with experience in geriatric, palliative and dementia care more likely to discontinue med- ications. age, gender, religion, experience working in nursing homes did not make a significant contribution to the decision. conclusions: practitioners preferentially discontinued medications prescribed for secondary prevention. experience significantly pre- dicted the number and type of medications discontinued. regular medication reviews are recommended in long-term care. decisions to continue medications in those with advanced dementia should be individualised. o acute dementia care: a review of hospital activity attributable to the care of patients with dementia r coary, r briggs, s kennelly department of age related health care, tallaght, ireland background: currently, there are approximately , people liv- ing with dementia in ireland. this is estimated to rise to , by . the estimated annual cost of caring for those with dementia in ireland is € . billion, the bulk of this being spent on informal carers and residential care. patients with dementia have significant medical comorbidities and higher rates of hospitalisation. acute hospital admissions have higher rates of mortality and morbidity, with longer lengths of stay (los). method: using the hospital inpatient enquiry portal (hipe), we conducted a review of hospital activity specific to dementia from to , and compared it to non-dementia groups. we looked specifically at patient demographics, presenting diagnoses, outcomes and los. additionally, we examined the cost of acute dementia care using the hospital casemix system which allocates funding for patient care based on case complexity. result: of the total admissions, % of all inpatient episodes were attributable to patients with dementia. they accounted for % of total bed days. the average los was . days versus . . the most common presenting diagnosis was pneumonia, comprising % of total admissions of patients with dementia, followed by stroke ( %) and urinary tract infection ( %). the average casemix cost was almost three times more (€ , ) per patient with dementia, compared to non-dementia patients (€ , ). the costs attributable to patients with dementia accounted for % (almost € , , ) of the total hospital casemix budget for the period. from to there was a % increase in the number of inpatient episodes coded with dementia. conclusions: this study demonstrates the significant share of overall hospital activity attributable to the care of patients with dementia, partly due to their longer los and the complexity of their care needs. we conclude that a strong case can be made for a dementia-specific service to cater solely for this vulnerable cohort. o dementia’s influence on hospital length of stay of older people may be overstated and mainly relates to delays in discharge to long-term care catherine o’sullivan , aoife barrett , vanessa browne , edmund manning , david william molloy , niamh o’regan , suzanne cahill , john linehan , kathleen o’sullivan , david meagher , suzanne timmons mercy university hospital, cork, ireland; centre for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland; dementia services and information and development centre, st. james’s hospital, dublin, ireland; older person services, hse, dublin, ireland; school of mathematical sciences, university college cork, cork, ireland; department of psychiatry, university of limerick, limerick, ireland background: dementia is a costly public health issue and research suggests that dementia increases length of stay (los) in acute hos- pitals. this study aimed to investigate the relationship between dementia and los in patients identified prospectively, rather than hospital-coded cases. methods: the cork dementia study screened older people (over years of age) for dementia on admission to six cork county hos- pitals, with longitudinal in-hospital follow-up. key baseline parameters included age, sex, dementia status, delirium, medical co- morbidities (cirs-g), functional status, marital status, and place of abode prior to admission and at discharge. s ir j med sci ( ) (suppl ):s –s results: of the patients with dementia status established, had dementia ( % mild), as determined by an expert panel. people with dementia were rarely admitted to private beds ( versus % of controls). people with dementia had non-significantly longer los than controls (mean . ± . versus . ± . , p \ . ; median los days in both groups); but needed more : ‘‘special’’ care ( vs. %). a strong influence on los was being admitted from home and discharged to residential care (‘‘change of abode’’), occurring in % of home-dwelling people with dementia and % of controls (total n = ; los = . days). at baseline, . % of people with dementia lived in residential care, compared to % of controls. the los for those admitted from and returning to residential care was particularly short (n = ; los = days). being admitted acutely, co-morbidity, and change of abode all independently predicted los. conclusions: this prospective study included all severities of dementia and importantly, did not rely on hospital-coded data, which is biased towards advanced dementia. contrary to previously pub- lished research, dementia did not significantly affect los. rather, change of abode from a home setting to residential care influenced los, in people with and without dementia. o end of life dementia care in acute hospitals emma o’shea , sean kennelly , suzanne timmons , anna de siun , paul gallagher , desmond o’neill university college cork, cork, ireland; trinity college dublin, dublin, ireland background: as the prevalence of dementia increases, more people will die with dementia in acute hospitals. literature suggests that good quality dementia care is not always provided in acute hospitals, impeding effective palliative care. this study aimed to evaluate assessments relevant to end-of-life care for people with dementia during acute hospital admission. method: medical case notes were retrospectively reviewed from people with dementia admitted to irish hospitals. inclusion criteria included a recorded hospital in-patient enquiry (hipe) diagnosis (primary or other) of dementia, and a length of stay greater than days. data was collected on care from admission through discharge. within the overall group, patients died, were documented to be receiving end-of-life care, and/or were referred for specialist pallia- tive care during the hospital admission. results: in the selected cases (median age years), people died during the admission, and a further were receiving end-of-life care, referred to a specialist palliative care service, or both. of note, % (n = ) of those who died were receiving end of life care or referred to spc, indicating that the death was not unexpected. however, many multidisciplinary assessments essential to end-of-life care were not performed. pain was not assessed in % and delirium screening was not performed in % of patients. % had anti- psychotic drugs prescribed during admission, % of which were new prescriptions. almost half ( %) were prescribed for ‘agitation’, yet mood was assessed in only % of patients. a negligible per- centage of case-notes contained information related to the person with dementia that would allow for person-centred care at end-of-life to be carried out. conclusion: the results of this study suggest a picture of poor symptom assessment at end-of-life for people with dementia in acute hospitals, precluding the planning and delivery of effective palliative care. o environmental risk factors for cognitive ageing: geographical location, social engagement and lifestyle marica cassarino , vincent o’sullivan , rose anne kenny , annalisa setti university college cork, cork, ireland; trinity college dublin, dublin, ireland background: global ageing, coupled with increasing urbanisation, poses the challenge to provide supportive environments where to grow old (world health organisation, ). while there is evidence of geographical variations of dementia (cahill et al., ), a sys- tematic investigation of key environmental factors for cognitive health in old age is lacking. the study explored the association between urbanisation and cognitive functioning in old age in ireland, and its interaction with socioeconomic status and lifestyle. methods: data were obtained from the first wave of the irish longitudinal study on ageing (tilda), a large cohort study on healthy irish residents aged and older (n = , ), conducted in . hierarchical regression models were used to examine the association between the geographical residence of participants—lar- ger urban areas (dublin), cities/towns, or rural areas—and cognitive measures of verbal fluency, immediate and delayed recall, global cognition (montreal cognitive assessment, moca; mini mental state examination, mmse), while controlling for confounding factors. results: rural residents presented a poorer verbal fluency than people living in larger urban areas (b = - . , p \ . ), as well as poorer global functioning (moca: b = - . , p \ . ; mmse: b = - . , p \ . ), immediate recall (b = - . , p \ . ) and delayed recall (b = - . , p \ . ), after controlling for demo- graphic and socioeconomic status, health, social participation, and lifestyle. conclusions: the study suggests an association between urbanisation and cognitive ageing in ireland. further research is needed to better address the factors influencing this association, as for example the availability of services. these findings have policy implications supporting the identification of environmental resources that can be modified or optimised to promote cognitive health in old age. references: . cahill s, o’shea e, pierce m ( ) creating excellence in dementia care: a research review for ireland’s national dementia strategy . world health organisation ( ) global age-friendly cities: a guide. world health organisation, geneva o negative perceptions of ageing predict longitudinal decline in executive function deirdre robertson, bellinda king-kallimanis, rose anne kenny trinity college dublin, dublin, ireland background: increasing prevalence of cognitive impairment is one of the greatest challenges facing global healthcare. medications have had limited success and the heterogeneity of cognitive impairment is ir j med sci ( ) (suppl ):s –s s such that research is looking towards behavioural and psychological factors as targetable risk factors. experimental work has revealed that older adults primed with negative ageing perceptions show immediate declines on cognitive measures. what remains unclear is whether these effects are short-term or whether negative ageing perceptions have long-term detrimental effects. we investigated the association between negative ageing perceptions and cognition longitudinally. methods: , participants completed two assessment waves from the irish longitudinal study of ageing (tilda), a population rep- resentative sample, aged + (mean age . , . % female). negative ageing perceptions were assessed using the ageing per- ceptions questionnaire at wave . cognitive measures taken at wave and years later included immediate and delayed recall (word list learning), executive function (animal naming), prospective memory ( tasks) and self-rated memory decline. demographic, social and health variables were included as covariates in multivariate regression analyses. results: all cognitive domains were associated cross-sectionally with negative ageing perceptions. after adjustment for baseline cognition, measurement error, demographic and health variables participants with negative perceptions of ageing at wave showed a decrease on executive function scores (b: - . , % ci - . , - . , p \ . ) years later. this was not statistically significant for the other cognitive domains. conclusions: negative perceptions of ageing are associated with a decline in executive function independent of other psychological and objective health factors. future work will determine mediating pathways which may be behavioural (e.g. reduced social engagement) or biological (e.g. increased reactivity of the hypothalamic–pituitary– adrenal axis). currently, this research highlights the role of psycho- logical state in cognitive function and may suggest that ageing perceptions could be a modifiable risk factor for some elements of cognitive decline. o cognitive screening tests need to be adjusted for age and education in patients presenting with symptomatic memory loss rónán o’caoimh , yang gao , paul gallagher , joseph eustace , william molloy centre for gerontology and rehabilitation, st finbarr s hospital, cork city, ireland; department of geriatric medicine, cork university hospital, cork city, ireland; health research board clinical research facility, mercy university hospital, cork city, ireland background: while normative data is increasingly available for cognitive screening tests, cut-off scores for patients with cognitive impairment have not been established. we sought to define cut-off scores for two short cognitive screens in patients presenting with symptomatic memory loss, determining whether these require adjustment for age and education. methods: pooled analysis of three memory clinic studies in canada including patients with mild cognitive impairment (mci) and alz- heimer’s, vascular or mixed dementia. caregivers without cognitive symptoms were also included as normal controls. patients were cat- egorized by age (b or [ years) and educational attainment (b or [ years). results: , standardised mini-mental state examination (smmse) and , quick mild cognitive impairment screen (qmci) assessments were available between - . the optimal smmse cut-off score for normal was [ / (auc . ), com- pared to \ / for mci (auc . ), and \ / for dementia (auc . ). optimal qmci cut-offs were [ / for normal (auc . ), compared with \ / for mci (auc . ), and \ for dementia (auc . ). correcting for age, differences in education (b versus [ ) resulted in significant differences in median qmci scores for normal ( versus points, p \ . ) and mci ( versus points, p \ . ), but not dementia,( versus points, p = . ). although statistical differences were evident, median smmse scores were similar irrespective of age or education. the qmci more accurately identified cognitive impairment in younger adults with more education, optimal cut-off of \ / (auc . ), than older adults with less education, optimal cut-off \ / ,(auc . ), p \ . . no significant differences were seen for the smmse. conclusions: in patients presenting with symptomatic memory loss, cut-off scores for cognitive impairment required adjustment for age and education. age did not impact cut-off scores in patients with dementia and high educational attainment. caution should be exer- cised when selecting cognitive screens and their cut-off scores as instruments may differ in their sensitivity to these adjustments. o delayed recovery of blood pressure after orthostasis in individuals with supine hypertension is associated with poorer global cognition at -year follow-up in a sample of community dwelling older adults joanne feeney, cara dooley, rose anne kenny trinity college, dublin, ireland background: orthostatic hypotension (oh) is relatively common among individuals with hypertension and previous research by our group has shown a cross-sectional association between oh and worse cognition among individuals with supine hypertension (sh). this study examines whether the combination of sh and delayed ortho- static blood pressure recovery at baseline predicts cognitive performance at -year follow up. methods: , older adults who participated in both the first and second waves of the irish longitudinal study on ageing were included in the analysis. beat-to-beat orthostatic blood pressure (bp) measurements were carried out during a lying to standing orthostatic stress test at wave and the percentage of baseline systolic and diastolic bp recovered by , , , and seconds post active stand was calculated. sh was defined as having c mmhg sys- tolic or mmhg diastolic bp immediately before standing. cognition was assessed at both waves using the mini-mental state exam (mmse). multivariable models were adjusted for demo- graphics, depression, health behaviours, bmi, cholesterol, cardiovascular conditions, medications, and baseline mmse. results: there was no main effect of the percentage bp recovered post stand. there was evidence of a main effect of sh on cognitive performance at wave but the interaction between sh and systolic bp recovery was also significant at , , and seconds post stand, such that individuals with sh and slow recovery of bp after orthostatic stress had lower mmse scores at wave (p values \ . ). conclusions: poor recovery of bp after orthostasis was associated with worse cognition at -year follow up in individuals with sh. this suggests that individuals with more pronounced autonomic dysregu- lation are at greater risk of cognitive decline. longitudinal study is required to determine whether this group are more likely to develop mild cognitive impairment/dementia. s ir j med sci ( ) (suppl ):s –s o b-vitamin status in relation to cognitive decline over years in healthy older adults catherine f hughes , helene mcnulty , mary ward , leane hoey , kristina pentieva , anne m molloy , fergal tracey northern ireland centre for food and health, university of ulster, coleraine, northern ireland, uk; institute of molecular medicine, trinity college dublin, dublin , ireland; causeway hospital, coleraine, northern ireland, uk background: advancing age is associated with a decline in cognitive function which can range from mild cognitive impairment to dementia. epidemiological evidence suggests that sub-optimal b-vitamin status may be associated with greater cognitive impair- ment. the aim was to investigate whether low b-vitamin status at baseline was associated with accelerated cognitive decline over a year follow-up period. methods: in a retrospective study, healthy older adults (n = ; aged – years) who had been previously screened for cognitive function were reassessed years after initial assessment. cognitive function was assessed at both timepoints by the mini-mental state examination (mmse), the most widely used cognitive screening tool in clinical settings. participants were initially recruited as being cognitively healthy at baseline, i.e. having an mmse score between – . dietary intakes and b-vitamin biomarkers and other health and lifestyle factors were also measured. results: at the year follow-up assessment, when participants were aged . ± . years, mean cognitive mmse scores had declined from . ± . to . ± . (p \ . ). although most partici- pants showed a typical rate of cognitive decline expected for healthy older adults (i.e. a decrease of . – . mmse points per year), cognitive decline occurred at an accelerated rate in a sub-set of par- ticipants (i.e. greater than mmse point per year; n = ). after adjustment for age, a low baseline concentration of vitamin b , as measured using pyridoxal- -phosphate (plp; \ . nmol/l) was associated with a -fold higher risk of having accelerated cognitive decline. no significant relationships between cognitive decline and the other b-vitamins were observed. conclusions: in conclusion, lower vitamin b status at baseline was strongly associated with an accelerated rate of cognitive decline over the year period. vitamin b may be an important (often over- looked) protective factor in maintaining cognitive function in ageing. o is there a cognitive prodrome to delirium? niamh o’regan , james fitzgerald , katrina maughan , dimitrios adamis , david william molloy , david meagher , suzanne timmons centre for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland, graduate entry medical school, university of limerick, limerick, ireland, school of applied psychology, university college cork, cork, ireland, sligo mental health services, sligo, ireland background: delirium is ubiquitous in hospitals, and independently leads to adverse outcomes. prevention and early intervention can attenuate these outcomes; however, detection rates are low, particu- larly early in delirium course. identification of a delirium prodrome would facilitate prompt detection and intervention. a prospective study of incident delirium was performed aiming to identify prodro- mal features. methods: medical inpatients of c years were assessed for delirium within hours of admission using the delirium rating scale- revised’ (drs-r ). consenting subjects with no evidence of delirium on admission were then assessed daily for delirium devel- opment. patients also underwent daily cognitive testing including -item cognitive impairment test ( cit) (scores c indicate cog- nitive impairment), spatial span forwards (ssf), days of the week backwards (dotwb) and a score of visuospatial function. controls remained non-delirious over at least consecutive assessments. results: in total, patients were included in the prospective study, median age years, . % male. incident delirium was diagnosed in patients, of whom developed delirium on the second day of admission. taking a subgroup of all patients who developed delirium on day and control patients (total n = ), logistic regression analysis examined if cognitive tests on first assessment predicted delirium diagnosis the following day. on univariate analysis, cit, ssf, dotwb and visuospatial score were all significant predictors of impending delirium. controlling for sex, age, dementia, barthel index, cumulative illness rating scale and hearing impairment, a cit score of c still predicted delirium on the day before diagnosis (or . , % ci . – . , p = . ). conclusions: the cit is a simple and quick test which incorporates tests of orientation, attention and logical memory. the preliminary findings of this study show that impairment on the cit within hours of admission indicates impending delirium and hence may be a cognitive marker of the delirium prodrome. o baseline predictors of delirium in medical inpatients niamh o’regan , james fitzgerald , dimitrios adamis , david william molloy , david meagher , suzanne timmons centre for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland; graduate entry medical school, university of limerick, limerick, ireland; sligo mental health services, sligo, ireland background: delirium is highly prevalent, occurring in % of hospital inpatients, however, detection rates are poor. identifying simple clinical predictors of delirium on admission may facilitate earlier detection. methods: medical inpatients of c years were assessed within hours of admission for delirium in a prospective study investi- gating delirium prodrome. a delirium rating scale-revised’ (drs-r ) severity score of c and/or total score of c was used to diagnose delirium. patients with prevalent delirium (i.e. delirium at admission) were excluded. consenting non-delirious patients were assessed daily for delirium using the drs-r . data pertaining to delirium risk factors were also collected. multivariate logistic regression was used to ascertain predictors of incident (i.e. occurring after admission) delirium. controls remained non-delirious in hospital for at least days and consecutive assessments. results: in total, patients were approached, and ( . %) diagnosed with prevalent delirium on admission. others were exclu- ded from longitudinal assessments due to refusal (n = ), dying (n = ), communication/coma (n = ), early discharge (n = ), withdrawal (n = ) and clinical reasons (n = ), leaving patients included in the study. incident delirium was diagnosed in patients ( . % of approached; . % of those studied). inde- pendent predictors of incident delirium on multivariate analysis were dementia (or . , % ci . – . , p = . ); barthel index (bi) score (or . for each unit decrease in score, % ci ir j med sci ( ) (suppl ):s –s s . – . , p = . ), and cumulative illness rating scale (cirs- g) score (or . for each unit increase in score, % ci . – . , p = . ). conclusions: dementia is a well-known risk factor for delirium, however, it too is under-recognised and diagnosis can be difficult to ascertain at point of admission. conversely, bi is a very simple and widely used measure of functional ability which may prove useful in stratifying those at risk of in-hospital delirium on admission. o the impact of the national clinical programme for older people on older re-attenders to the emergency department colm byrne, mich vartulli, toddy daly, lorraine kyne, joseph duggan, chie wei fan mater misericordiae university hospital, dublin, ireland background: older adults who attend the emergency department (ed) are at risk of re-attending and readmission. our aim was to study the re-attendance of older persons to the ed over a -month period in a dublin hospital and their exposure to medicine for the older persons (mftop) services after the implementation of the national clinical programme for older people (ncpop). methods: a retrospective review of the electronic patient records of community-dwelling older persons over years old who attended the ed two or more times between / / and / / was performed. their age, gender, frequency of ed attendance and admissions and mftop service use were collected. chi square or kruskall–wallis testing was performed as appropriate to compare between the age groups – , – and and over. results: two-hundred and sixty-four older persons, ( . %) women, had multiple attendances with attendances and admissions. most attended twice ( . %). of the ( . %) patients who were admitted, % were under mftop (c.f. % in ). a further ( . %) received mftop consultations as inpatients. patients in the older age groups were more likely to be known to mftop (age groups – , – , and over: . , . , . %, v = . , p \ . ) and receive mftop consultations as in-patients ( . , . , . %, v = . , p \ . ). there was no significant difference in mean ed attendance rate or admission rate across the age groups. conclusions: our study showed that % of the older ed re- attendees were admitted. there has been a . -fold increase in admission under mftop. those age and over were more likely to be known to mftop services or receive consultations. the imple- mentation of the ncpop may have streamlined the frail and at-risk older patients who are frequent users of ed to specialist geriatric care but this will require further evaluation. o characteristics and outcomes of older patients attending an acute medical assessment unit aoife fallon, jess armstrong, tara coughlan, ronan collins, des o’neill, sean p kennelly department of age related healthcare, tallaght hospital, dublin , ireland background: the care of older persons accounts for an increasing proportion of the unscheduled care workload for acute hospitals. the recent development of acute medical assessment units (amau) has provided an alternative model for acute unscheduled care other than the traditional emergency department (ed) route. several screening instruments such as the triage risk screening tool (trst) have been developed to capture the higher levels of clinical complexity and med- ical comorbidities that older patients present with. the aim of this study was to report on the characteristics and outcomes for older patients reviewed in the amau of a tertiary referral university teaching hospital. methods: data on all patients attending the amau during was prospectively collected using symphony � electronic data systems. information on demographics, patient experience times, and details of the presentation and discharge outcomes were retrieved. results: a third ( / , . %) of all patients assessed in the amau were aged c . the majority were referred directly from ed triage ( / , . %). relative to their younger counterparts older patients presented more acutely unwell with ( / , . % vs / , . %) categorized as triage category / on presen- tation. despite being recommended in all older patients, only / ( . %) of older amau patients had a trst assessment completed in ed triage, with / , . % identified as ‘‘at-risk’’. almost two-thirds of older patients ( . %) were discharged from the amau within the -hours target time, the mean time being . hours, their admission rate ( / , %) was double that of younger patients. many older patients discharged home had follow up arranged in the amau review clinic amau review clinic in / ( . %), or the age-related day hospital in / ( . %). conclusions: as amaus evolve they have enormous potential to provide enhanced gerontologically-attuned medical care to increasing proportions of frail older patients presenting to the acute setting. o symptom presentation in myocardial infarction (mi) patients: a regression model exploring if it is different in the aged gabrielle mckee , sharon o’donnell , mary mooney , frances o’brien , debra moser trinity college dublin, dublin, ireland; university of kentucky, lexington, usa background: patients with mi need to present as soon as possible after symptom onset to optimise prognosis and reduce morbidity. many factors have been shown to influence pre- hospital delay. recent studies have shown that age is not as significant a factor as previously, however, observations indicate otherwise. the aim of this study is to explore the factors that may contribute to pre-hospital delay in mi aged patients. methods: this cross-sectional, multisite study recruited mi patients prior to discharge. patients completed a detailed questionnaire, and clinical details were verified with patient’s case notes. data were analysed using logistic regression. results: a total of mi patients were recruited, . % were \ , % were male and . % had a stemi. the median pre-hospital delay time for mi patients aged \ and [ was . and . hours, respectively, this was a significant difference (p \ . ). a logistic regression model finally examining typical and atypical symptoms and presentations features between the age groups was significant (v = . , p \ . ). the presenting features that were singularly significantly associated with the [ age group were: less sweating, less stomach symptoms, less chest pain, less chest pressure, less left arm pain, less severe symptoms. in addition more patients in the [ age group phoned their general practitioner. phoning the general practitioner had the highest beta value ( . ). s ir j med sci ( ) (suppl ):s –s conclusions: pre–hospital delay time was higher in mi patients [ . this study observed that this may be due to differences in symptoms and behaviours known to impact pre-hospital delay. increased awareness that older patients may present with less severe, less typical symptoms and promoting patients to access the services rather than their gp in the face of unresolved mi symptoms is essential to improve prognosis in this cohort. o the utility of fdg pet brain in the diagnosis of neurodegenerative conditions avril m beirne , niall sheehy , ba lawlor cunningham , kevin mccarroll mercer’s institute for reserch on ageing, st james’s hospital, dublin , ireland; department of radiology, st james’s hospital, dublin , ireland background: fdg pet brain has become increasingly utilized as a radiological biomarker in the evaluation of cognitive conditions where neurodegeneration is suspected. specific areas and severity of hypometabolism have been found to be associated with certain neu- rodegenerative conditions. the corollary is that this test can be helpful in out ruling neurodegeneration in atypical or complex cases. the aim of this study was to evaluate the concordance rate between clinical diagnosis and pet diagnosis. method: all patients who underwent a pet brain scan between october and february were included in this study. patient charts were reviewed for initial clinical diagnosis. all pets per- formed were reviewed and the pet diagnosis and areas of hypometabolism were also recorded and changes in clinical diagnosis were also reviewed. results: over this year period, pet scans have been per- formed. mean age of those scanned was years ( – ), ( %) were male and ( %) female. the commonest pet diagnosis was ad/ppa secondary to ad, n = ( %). pet diagnosed ftd in cases, was inconclusive in ( %) and scans showed no definite neurodegenerative pattern. in those with ad, posterior cingulate cortex hypometabolism was the commonest abnormality found in scans ( %). the concordance rate between pet and initial clinical diagnosis was % ( / ). there was a change in diagnosis based on pet result in % of cases. conclusions: pet scans can be a helpful tool in evaluating cognitive disorders and can impact significantly on clinical diagnosis. however, the pet results must be considered in the context of all available clinical information as it is frequently not in concordance with clin- ical diagnosis and can be inconclusive in findings. o an audit of elderly hospitalised patients’ attitudes and understanding of pain fiona roberts, aoiffe lemasney, padraig bambrick, riona mulcahy, george pope waterford regional hospital, waterford, ireland background: pain is a common symptom in elderly hospitalised patients. despite this, its assessment and management remains vari- able with pain often under recognised and poorly documented in the medical notes. the aim of this study was to compare patients reported symptoms of pain compared to its documentation in the notes. we also assessed patients understanding of their pain as well as their satisfaction with their pain management. methods: we interviewed medical inpatients aged over and included questions about the duration of their pain and its aetiology. we also recorded the reported impact of pain on their activities of daily living. exclusion criteria included haematological/oncological inpatients, reduced consciousness, being critical unwell or being unable to answer the questionnaire. an abbreviated mental test score was performed on / of the patients. data was also obtained from the patients’ medical charts. results: ( %) patients interviewed reported pain of whom ( %) reported chronic pain. only ( %) of patients who suf- fered from pain understood the cause of their pain. of those who could not identify a cause of their pain had consented to an amts and ( %) scored or more. % of patients with chronic pain had presented to their gp with this within the previous years. ( %) patients felt that their pain was controlled all or most of the time and ( %) felt it was rarely or never controlled. conclusion: this audit highlights the poor understanding of pain by elderly hospitalised patients even in those with normal cognition. communication between healthcare providers and patients needs to clearly address pain as a common major symptom. a significant number of patients reported no symptom relief from their pain sug- gesting the need for more regular and appropriate review. o occult complexities in geriatric inpatient consultations joseph browne, rory durcan, nicholas power, morgan crowe, jj barry, graham hughes, diarmuid o’shea st vincent’s university hospital, dublin , ireland background: frail older patients represent an increasing proportion of in-hospital caseloads. data on life expectancy of elderly people undergoing appropriate inpatient assessments is limited and will be important for effective service planning and monitoring quality of health care. previous studies have shown mortality for those awaiting long-term care ranging from to %. methods: patients were referred to the geriatric consultation. patients were divided into categories of referral—(a) long term care assessment (ltc) (b) rehabilitation assessment (rehab) and (c) medical assessment. baseline demographics and outcomes were recorded. logistic regression was used to identify any possible factors associated with discharge outcomes, including mortality and discharge home. results: ltc group (n = ) mean age . ( . ) and mean length of stay (los) of . days. ( . %) patients died while awaiting ltc, with ( %) dying in first days after admission. ( . %) patients returned home. rehab group (n = ): mean age was . with a mean length of stay . days. mortality was . %. medical assessment group (n = ): mean age was . years and los of . days. mortality was . %. the most frequent reason for referral included cognitive impairment, falls, discharge planning and medication review. overall, the ltc group compared to the other groups had signifi- cantly higher mortality (p \ . ) and had longer los (p \ . ). cognitive impairment, history of falls and higher dependency levels were associated with increased likelihood of ltc and mortality. conclusions: patients referred for assessment for ltc have a high mortality rate, with one in five patients dying during admission and over % being discharged home with appropriate care. geriatric expertise and assessment is vital for this vulnerable group of patients, ir j med sci ( ) (suppl ):s –s s targeted suitably, could improve the selection of patient for post-acute care with appropriate discharge planning. o smoking prevalence in an elderly inpatient population breda cushen, kristina lukjanova, emer ahern st. luke’s general hospital, kilkenny, ireland background: smoking-related illness accounts for the majority of acute hospital admissions. morbidity and mortality associated with these conditions is much higher in the elderly population. smoking cessation can improve life expectancy in all age groups. while smoking prevalence tends to fall in the elderly, an estimated . % of europeans years and older are still smoking. the aim of this audit was to study smoking prevalence in patients years and older admitted to our institution. methods: data on smoking status, known smoking-related co-morbidi- ties (ischaemic heart disease, stroke, copd) and inhaler use was collected from the medical notes of acute medical and surgical admissions. results: complete data was available patients of whom had smoking status documented. the mean age was ± . years. % had a smoking history with . % continuing to smoke, % male. almost two-thirds of those with a previous smoking history had a documented history of ihd, stroke, copd and/or inhaler use com- pared with % of never smokers. only of our smokers were prescribed nicotine replacement therapy. conclusion: smoking prevalence is higher in our cohort than the european average, and is associated with significant co-morbidity. greater efforts need to be made to encourage smoking cessation in the elderly population in ireland. o the experiences of family caregiving: making sense of dementia from both cared for and caregiver perspectives mary galvin university college cork, cork, ireland background: this paper explores the dementia patient and family caregiver relationship. there is much literature on care in the context of long term care and/or hospital settings. this research, however, explores care in the domestic setting, outlining the experiences of both caregiver and cared for when they find themselves living with dementia. the intention is to explore both perspectives on how they make sense their lives in the role of patient and caregiver while at the same thing maintaining their existing relationships such as, husband and wife, mother and daughter. methods: a qualitative research design was used in the homes of four caregiver relationships. the experiences of these participants were captured using a variety of qualitative techniques including: action research, design probes, observation and semi structured interviews. these experiences were then analysed using narrative analysis. results: four main themes were identified in relation to how care- giver and cared for make sense of their experience of dementia: living without privacy, balancing the old us and the new us, the expectation of adopting and the challenge of letting go the role of caregiver, and who cares for the caregiver? conclusions: webster ( ) argued that no one experiences dementia in the same way. this paper highlights that equally, no one experiences caregiving in the same way. by illustrating the above themes, this paper will give insight into the challenges of maintaining a relationship of care in the family home and offer suggestions on how we can in turn support it. reference: . webster g, fels di, gowans g, hanson vl ( ). portraits of individuals with dementia: views of care managers. in proc, bcs-hci ’ , – o the impact of caring for spouses on depression and health behaviours in over s in ireland, the irish longitudinal study on ageing christine a mcgarrigle, cathal mccrory, rose anne kenny trinity college dublin, dublin, ireland background: we aimed to determine if informal caring for a spouse was associated with depression or health behaviours in adults and whether these effects were influenced by the amount of formal care also received. methods: a total of , respondents, who were married/partnered in two waves ( – and – ) of the irish longitudinal study of ageing (tilda) were analysed. we used multivariate logistic regression models to determine whether caring for a spouse was asso- ciated with depression or health-related behaviours, adjusting for socio- demographics and health and social and formal care support. change scores in depression between waves in spousal carers were calculated with the -item centre for epidemiological studies depression (ces- d) scale. all analyses were conducted in stata . results: overall . % ( of , ) of married individuals aged over in ireland began caring for their spouse since surveyed in – ; % spent more than hours per month giving care. beginning to care for a spouse was associated with increased depression (or . , % ci . – . ) for women, but not in men. becoming a spousal carer was associated with negative health behaviours; carers were more likely to be current smoker (or . , % . – . ) and men to have a problem with alcohol (or . , % ci . – . ), compared to non-carers. the negative effect of caring on mental health was attenuated by social support and receiving respite care, home help and personal care attendants. conclusions: the impact of becoming a spousal carer on depression and behavioural health was differentially moderated by gender, with women having increased depression, and men more likely to have problematic drinking. this effect was reduced by access to formal care. social inclusion of informal carers and enhanced formal home support is necessary to reduce the detrimental health-related risks of care-giving. o carer burden and potentially harmful behaviours engaged in by carers of older people: results of a national survey attracta lafferty , gerard fealy , carmel downes , jonathan drennan university college dublin, dublin, ireland; university of southampton, southampton, uk background: the reliance on families for care provision is likely to increase with the projected rise in the older population. while the s ir j med sci ( ) (suppl ):s –s majority of older people cared for by family members receive good quality care, those who find themselves under increasing pressures may experience carer burden and conflicts as a result of caregiving responsibilities. this paper reports key findings from a national sur- vey of family carers of older people that examined the impact of caregiving on the carer and the conflicts that may occur within the caregiving relationship. methods: over , carers in receipt of a carer’s allowance par- ticipated in an anonymous postal survey which collected information on carers’ health and wellbeing, caregiving and carer behaviours which may be deemed potentially harmful to an older person. the self-completion questionnaire included the zarit burden interview, the centre for epidemiological studies depression scale and a vali- dated modified version of the conflict tactics scale measuring potentially harmful behaviours. results: carer burden was found to be the main predictor of poten- tially harmful carer behaviour. over a third of carers reported that they engaged in at least one potentially harmful psychological behaviour and % indicated that they engaged in potentially harmful physical carer behaviour in the previous months. verbal abuse was the most commonly reported form of potentially harmful behaviour reported by carers. conclusions: this study is the first comprehensive national study to examine potentially harmful behaviours by family carers of older people. preventive intervention efforts need to target carer burden, in an effort to alleviate the pressures experienced by many carers resulting from demanding care work. consequently, cases of poten- tially harmful carer behaviour may be prevented from deteriorating into more serious cases of elder abuse, and both family carers and dependent older people can benefit from an improved quality of life. o survey of healthcare workers suggests unmet palliative care needs in parkinson’s disease siobhan fox , elizabeth gannon , alison cashell , w. george kernohan , marie lynch , ciara mcglade , tony o’brien , sean o’sullivan , catherine sweeney , suzanne timmons center for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland; parkinson’s association of ireland, dublin, ireland; institute of nursing and health research, university of ulster, co. antrim, uk; irish hospice foundation, dublin, ireland; cork university hospital, cork, ireland; marymount university hospital and hospice, co. cork, ireland background: increasing attention is being focused on the role of pal- liative care in non-cancer illnesses. parkinson’s disease (pd), a progressive, incurable, neurodegenerative illness with complex symp- tomatology, is ideally suited to a palliative care approach. however, unmet palliative needs have been widely reported in studies of patients and carers. common themes include insufficient information, ad-hoc service delivery, and apparent uncertainty about the appropriateness of palliative care in pd among health care workers (hcw). this study aimed to investigate the knowledge, attitudes and prior training of irish hcws in palliative care in advanced pd. methods: a -item survey was distributed to hcws, including neurologists, geriatricians, general practitioners, nurses, and allied health professionals, in acute and community settings in the republic of ireland, using mixed electronic and postal distribution. results: three-hundred and six surveys were returned. most hcw ( %) believed that people with pd have palliative care needs; however, % said these needs are ‘never’ or only ‘sometimes’ met. when asked to define ‘‘palliative care’’, hcw often reduced it to end- of-life care. unmet needs were reflected in relatively few people with pd being referred to specialist palliative care; % of consultants made no referrals in the previous months. just % of hcw had training on palliative care aspects of pd; % were interested in receiving further education. respondents wanted all topics pertinent to palliative care in pd covered, and many felt they also needed further training in general pd management. conclusions: hcws perceive people with pd to have unmet pallia- tive care needs. there is a discrepancy between best practice recommendations for palliative care in pd and the stated beliefs of hcws, and their actual practice. further education in palliative care in pd is needed to ensure better quality of care for people with advanced pd. o factors associated with place of death among older irish adults: results from the irish longitudinal study on ageing sheena mchugh , aoife mcnamara , patricia kearney , rose-anne kenny , charles normand university college cork, cork, ireland; trinity college dublin, dublin, ireland background: place of death is associated with cause of death and demographic characteristics. studies using death registries and insurance databases often lack contextual detail on the physical and psychosocial circumstances at the end of life. we examined the association between these factors and place of death using data from the irish longitudinal study of ageing (tilda). methods: tilda recruited a nationally representative random sample of , adults aged c years at wave ( ). at wave ( ), individuals were deceased ( . %). an end-of-life interview (eol) was completed with relatives, friends or carers. responses were linked with data from wave . place of death was categorised as at home, hospital, nursing home/residential setting or hospice. chi square tests were used to examine associations between place of death and demographic, physical and psychosocial factors at wave . results: eol interviews were completed ( % response rate). of the deaths analysed, took place in hospital ( . %), at home ( . %), in a nursing home ( . %) and in a hospice ( . %). % of cancer deaths took place in hospital (n = ) and . % took place in a hospice (n = ), compared to . % of respiratory deaths taking place in hospital (n = ) and . % in a hospice (n = ). disability in the last months was significantly associated with place of death (p \ . ). education, health insurance and social support were not significantly associated with place of death. conclusions: despite evidence suggesting a preference for dying at home in ireland, most of the deaths took place in hospital, comparable to national data on place of death. physical factors including cause of death were significantly associated with place of death however socio-demo- graphic factors such as social support which have previously been shown to facilitate a home death were not borne out in the data. o the influence of dementia on one-year mortality following hospital admission, and place and cause of death edmund manning , suzanne timmons , aoife barrett , vanessa browne , david william molloy , niamh o’regan , ir j med sci ( ) (suppl ):s –s s suzanne cahill , john linehan , kathleen o’sullivan , noel woods , david meagher , aoife ni chorcorain centre for gerontology and rehabilitation, school of medicine, ucc, cork, ireland; dementia services and information and development centre, st james’s hospital, dublin, ireland; older person services, hse, cork, ireland; school of mathematical sciences, ucc, cork, ireland; centre for social policy studies, ucc, cork, ireland; department of psychiatry, university of limerick, limerick, ireland; cork university hospital, cork, ireland background: dementia is a progressive, incurable condition, with a predisposition to pneumonia, falls, pressure sores and malnutrition in advanced disease. we aimed to explore one-year mortality rates, and place and cause of death, for older people with dementia compared to controls, following admission to an acute hospital. methods: the cork dementia study assessed dementia status across six cork county hospitals in . patients were followed up at year after admission to determine outcomes, including place and cause of death. results: in total, patients were included across the hospitals; ( . %) were controls. of the followed-up at year, ( %) had died. people with dementia were more likely to die during the index admission, . versus . % (p \ . ), and to have died at -year follow-up . % ( / ) versus . % ( / , p \ . ). people with dementia died predominantly of respiratory tract infections (rti; / %), compared to controls who died pre- dominantly of cancer ( / , . %), with rti listed as a primary cause of death in only / ( . %) of controls (p \ . ). overall, people with dementia died more frequently in an acute setting ( %) than controls ( %, p \ . ), including four people with dementia re-transferred from a nursing home to an acute hospital prior to death. the factors on admission to hospital that were associated with mor- tality at year included dementia, functional status (barthel index), nutritional status (mini-nutritional assessment), co-morbidities (cumulative index rating scale), and place of abode. conclusion: this study highlights the effect of dementia on in-hos- pital mortality and mortality at year after a hospital admission, and the strong link between dementia and terminal pneumonia. the high proportion of deaths of people with dementia in an acute setting reinforces the need for advance care planning o dying to talk: initiating end of life care discussions with people who have dementia carmel collins, jean barber, marie lynch, lasarina maguire, deirdre shanagher, suzanne timmons, ann quinn, niamh o’donnell irish hospice foundation, dublin, ireland background: people dying with dementia are a very vulnerable group, who are at risk of never being formally diagnosed or being involved in end-of-life care (eolc) discussions. within the healthcare sector, many staff are reluctant to initiate eolc discussions with people with dementia due to fears of causing distress, role uncertainty, appropriate time and lack of confidence in delivering bad news [ ]. however, it is important that these challenges are overcome so people with dementia are given timely information so they can make informed decisions about their future care, have realistic expectations and avoid burdensome interventions at the end of life. to date, there has been a notable absence in the literature to support staff to initiate eolc discussions [ ]. methods: an expert advisory group was convened to provide clinical expertise in the developing of a guidance document. a literature review was completed (using pubmed, cinahl, cochrane) and these findings directed the scope of the guidance document. the expert advisory group collaborated over a month period before the guidance document was circulated for consultation with advisory groups, specialists, frontline service providers and service users. results: the guidance document was developed to support staff from all care settings to initiate eolc discussions with people who have dementia. the guidance document aims to highlight the specific communication needs of people with dementia and the importance of applying the palliative approach with this terminal condition. a framework was developed to optimise staff’s capacity to positively engage and communicate with people. conclusion: dementia does not equate to complete loss of the ability to communicate, but to a different system of communication. research strongly suggests the need for health care staff to develop their skills in effectively communicating with people with dementia so meaning dis- cussions on eolc can become embedded into practice. references: . clayton jm, hancock km, butow pn, tattersall mh, currow dc. clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life- limiting illness, and their caregivers. med j aust [serial on the internet]. , jun [cited march , ]; ( ):s , s , s – . . johnson a, chang e, daly j, harrison k, noel m, easterbrook s, et al. the communication challenges faced in adopting a palliative care approach in advanced dementia. int j nurs pract [serial on the internet]. , oct [cited april , ]; ( ): – . posters biology of ageing p a prospective study of mortality in the trinity university of ulster and department of agriculture (tuda) cohort avril m beirne , kevin mccarroll , miriam c casey , helene mcnulty , eamon laird , cathal walsh , j bernard walsh , mary ward , leane hoey , ann molloy , martin healy , jj strain , conal j cunningham mercer’s institute for research on ageing, st. james’s hospital, dublin, ireland; department of biochemistry, trinity college dublin, dublin, ireland; department of biochemistry, st. james’s hospital, dublin, ireland; university of ulster, coleraine, ireland; department of statistics, trinity college dublin, dublin, ireland background: tuda is a large cohort of community dwelling older irish adults aged years and older. this dataset provides the opportunity to evaluate the associations between baseline character- istics and diseases with mortality in the older irish adults method: participants were recruited from and to mid- into three cohorts: hypertensive, cognitive and bone. the cognitive and bone cohorts were recruited through outpatient clinics in st. james’s hospital and hypertensive cohort through general practitioners in northern ireland. mortality data was collected from date of recruit- ment until june and was collected for tuda participants recruited through a dublin hospital. information relating to date of death, cause and place of death was obtained from deaths certificates through the register of deaths births and marriages. s ir j med sci ( ) (suppl ):s –s results: of the , participants, % died (n = ) including ( . %) females with a mean age of . years. mean time to death was . years ( . – . ). those who died were older at base- line: . vs. . years, and more cognitively impaired: mean mini mental state examination . vs. . and more frail: mean timed up and go (tug) of . vs. . seconds in those still alive. mean vitamin d levels in the alive group were . vs. . nmol/l in those who died. the most common causes of death were broncho- pneumonia (n + , . %) and other cardiopulmonary disorders (n = , %) and stroke in cited in cases ( . %). dementia was documented as causal in cases and as a significant condition in n = ( . %). fractures were documented as causal in deaths. conclusion: those who died were older, more impaired cognitively and more frail at baseline. further analysis is required to evaluate these associations. despite participants being recruited with both cognitive and bone health issues, rarely were these documented as either cause of death or as significant conditions. p limb–shaking transient ischaemic attacks mary buckley, joe jordan, pat barry cork university hospital, cork, ireland background: in january , a -year-old man presented to our amu. he described ‘‘funny turns’’. these lasted \ minutes. he described upper limb shaking with no altered consciousness or fea- tures of progression. they occurred both at rest and standing. in , he had been investigated for recurrent ‘‘dizzy spells’’. in , he had a left tempero—parietal cva. carotid doppler’s at the time showed a completely occluded lica and a – % stenosis of rica. in the interim, he regularly complained of upper limb shaking episodes. it was decided to proceed with right carotid endarterectomy in . methods: mr. m was admitted for investigation. medications inclu- ded anti-hypertensives. systolic bp was persistently \ . anti- hypertensive medications were held but episodes of upper limb shaking persisted. telemetry showed sinus rhythm throughout. mri brain showed the old infarct but nil acute. eeg was normal. dopplers showed occluded lica and ? restenosis of rica. results: it was decided to proceed with ct perfusion pre and post acetazolamide. pre-acetazolamide ct showed reduced cerebral blood flow to left cerebral hemisphere and increased mean transit time. post acetazolamide ct showed a significant increase in cerebral blood flow to right cerebral hemisphere with a paradoxical reduction in cerebral blood flow to the deep white matter of the left cerebral hemisphere. four vessel cerebral angiogram showed no significant right carotid stenosis, the left internal carotid was completely occlu- ded. the left cerebral hemisphere blood supply was mainly from the posterior communicating artery via the vertebro-basilar circulation. conclusions: the diagnosis in this case was hypoperfusion syndrome resulting in limb shaking tias. miller fisher first described this syndrome associated with carotid stenosis in . treatment options include stopping anti-hypertensives and reperfusion surgery such as ec/ic bypass, cea or extra/intracranial stenting. p combining the active stand test and pattern recognition enables vasovagal syncope prediction michael carmody , hugh nolan , chie wei fan , clodagh o’dwyer , rose anne kenny , ciaran finucane tilda, tcd, dublin, ireland; tbsi, tcd, dublin, ireland; st. james’s hospital, dublin, ireland; mater hospital, dublin, ireland background: vasovagal syncope (vvs) is the most common form of syncope, accounting for – % of unexplained syncope. the gold standard of diagnosis is the head-up tilt (hut) test, a resource intensive procedure. this study aims to assess the accuracy of applying a pattern recognition methodology to predicting hut out- come based on as responses. methods: continuous blood pressure records obtained during an as were acquired from patients attending a falls and blackout unit. patients were categorized into groups based on their clinical history and hut response: controls (con), tilt-positive (hut+) and tilt- negative (hut-). data from subjects diagnosed with vvs i.e. hut+ and hut- were combined to form a vasovagal positive (vvs+) group. hemodynamic features (n = ) were extracted from as responses and entered into a linear discriminant classifier. classifier training and accuracy was achieved using an n-fold cross validation procedure. results: n = patients were recruited ( ± years; % male) of whom were con, were hut- and were hut+. max- imum prediction accuracy of hut response was . % (range . – . %), with a sensitivity of . % and specificity of . %. a multivariate classifier enabled us to distinguish between vvs+ and con with a maximum accuracy of . % (range . – . %), sensitivity of . % and specificity of . %. conclusion: this study highlights the existence of an alternative hemodynamic response to an as test exhibited by young patients prone to vvs. based on these responses, it was possible to identify the presence of vvs, using multi-parameter classification approaches, with an accuracy of %—a potential improvement on the hut accuracy ( – %). with prospective verification, this approach may form the basis of a novel tool for syncope diagnosis, population studies and the tracking of treatment efficacy. p a cross-sectional assessment of vascular health and orthostatic blood pressure fluctuation in older adults without vascular comorbidity john cooke , sheila carew , margaret o’connor , catherine peters , colin quinn , christine sheehy , aine costelloe , jean saunders , paul finucane , declan lyons university hospital limerick, limerick, ireland; graduate entry medical school, university of limerick, limerick, ireland; statistical consulting unit, university of limerick, limerick, ireland background: there is some evidence in support of a link between orthostatic bp changes and vascular dysfunction. it is plausible that this may be either a consequence of or contribute to orthostatic bp fluctuation. the objectives of this research were to determine whether a cross-sectional link exists between vascular health and postural bp changes identified using a finometer and to determine whether the pattern of orthostatic bp change could be used to predict vascular health. methods: older adults without prior vascular disease were recruited from the community. postural bp response to both active stand and head-up tilt (hut) was recorded using a finometer. endothelial function was assessed using flow-mediated dilation (fmd) and elisa assay of sicam- and se-selectin. vascular compliance was measured using augmentation index (aix) and central systolic bp ir j med sci ( ) (suppl ):s –s s (csbp). platelet reactivity was quantified using collagen closure time (cct), mean platelet volume (mpv) and elisa assay of sp-selectin. results: subjects completed the study protocol. they had a mean (±sd) age of . ± . years. % were female. the prevalence of hypertension was higher in subjects with orthostatic hypotension (oh) and orthostatic hypertension (ohtn) when compared with controls. individuals with ohtn (n = ) (compared to all others) had reduced vascular compliance and significantly higher levels of si- cam- . initial oh (n = ) was associated with healthier scores on fmd. conventional oh (n = ), regardless of pattern, was not associated with a different vascular health profile. the ability of postural bp responses to predict vascular ill-health was greater with active stand. conclusion: this small study has identified some significant cross- sectional links between orthostatic bp fluctuations and vascular health. the relationship was different for responses to active stand and hut. a larger longitudinal study will be required to determine the ability of postural bp fluctuations to predict vascular outcomes in older adults. p is short-duration orthostatic bp decay in asymptomatic older adults associated with cerebral hypoperfusion? john cooke , sheila carew , fiona o’sullivan , colin quinn , caroline o’connor , oonagh condon , jean saunders , paul finucane , declan lyons division of ageing and therapeutics, department of medicine, university hospital limerick, limerick, ireland; graduate entry medical school, university of limerick, limerick, ireland; statistical consulting unit, university of limerick, limerick, ireland background: orthostatic hypotension (oh) is a common trigger for cerebral hypoperfusion. cerebral hypoperfusion, often asymptomatic, is thought to accelerate the progression of white matter disease, cognitive impairment and mood disorders. if symptomatic, it causes dizziness and an increased risk of falls. the prevalence of oh in older adults is between and % when diagnosed using finometer technology. it was our objective to determine what proportion of these is likely to experience asymptomatic cerebral hypoperfusion. methods: healthy older adults without a history of symptomatic oh were recruited. participants underwent both a head-up tilt (hut) and active-stand (as) with bp monitored by finometer technology. middle cerebral artery (mca) and anterior cerebral artery (aca) velocities (cm/seconds) were monitored using a dwl multi-dop x . autoregulatory function was classified using the autoregulatory index (ari); poor (\ ), normal ( – ) and above average ( – ). results: subjects completed the study protocol. they had a median (iqr) age of . ( . – . ) years. subjects had oh on hut. subjects had oh on as. all subjects were asymptomatic. aver- aged mean flow-velocity (mfv) for the whole group demonstrated maintenance of adequate cerebral blood flow throughout minutes of monitoring post-orthostasis. however, the subgroup (n = ) with poor cerebral autoregulation (ari \ ) demonstrated a clear trend towards clinically significant lower mfv. this was most obvious on hut with the differences in area under the curve demonstrating a u value of . . conclusion: the majority of healthy older adults have asymptomatic oh when monitored using finometer technology. this does not lead to significant cerebral hypoperfusion. there is a subgroup of older adults however with poor cerebral autoregulatory function. our data suggests that these individuals may suffer significant hypoperfusion due to asymptomatic orthostatic bp decay. a larger study would be required to confirm this. it would also be worth repeating this study in subjects with symptomatic oh. p ambulatory blood pressure variables in the older irish adult: apsi study kirstyn james, eamon dolan connolly hospital, dublin, ireland background: hypertension is a leading risk factor for cognitive impairment and stroke in older adults. ambulatory blood pressure (abp) is useful in its detection and management. mean blood pres- sure values taken from abp recordings provide greater risk stratification than those gained in the office setting. more recently measures of variability and arterial stiffness such as the ambulatory stiffness index (aasi) can be calculated from abp and may be of importance. this study aimed to examine these variables in older irish adults. methods: the study examined ambulatory blood pressure recordings performed in primary care clinics in adult patients between january and june . all abp recordings were performed because of a previously elevated clinic bp measurement (cbpm). the study population was then divided into subgroups aged under and over . ethical approval was obtained from the local hospital ethics board. results: , patients were included in the study with a mean age of . ± . years. , patients in the group were aged over (mean age . ± . years). this group showed greater hours systolic bp variability compared to their younger counterparts ( . vs. . mmhg, p \ . ). the range of systolic bp was also greater ( . vs. . mmhg, p \ . ). aasi was also greater in older adults ( . vs. . , p \ . ) conclusions: this study illustrates the additional prognostic infor- mation that can be gained from abp in older adults. this confers a higher risk of cardiovascular events and may be of use in guiding therapy. p prospective characterisation of body composition after a short-term training programme using dual- energy x-ray absorptiometry in an active rehabilitation unit laura ann lambert, simon clifford, siobhan forman, aoife kilcoyne, stephen eustace, dermot power active rehabilitation unit, cappagh national orthopaedic hospital, finglas, dublin, ireland background: our aim in the active rehabilitation unit (aru) is to improve nutritional status, muscle mass and function. dual-energy x-ray absorptiometry (dexa) has been well validated over the last decade to accurately and precisely measure lean, fat, and mineral composition in various body compartments. our objective was to grossly determine changes in these components using the above modality following a short training programme. methods: we prospectively collected whole body dexa scans using a standardized protocol for a mixed gender cohort requiring s ir j med sci ( ) (suppl ):s –s rehabilitation in the aru. this cohort had a variety of diagnoses and co-morbidities. whole body dexa scans were performed on admission and then comparative scans were obtained following approximately – weeks rehabilitation. ethical approval was obtained. statistical analysis was performed using anova and paired sample t tests with spss software. results: a total of patients participated in this study to date, including nine females and three males. the mean age was . years. the mean percentage bone was . % for females and . % for males. the mean percentage lean muscle mass was . % for females and . % for males. the mean percentage body fat was . % for females and . % for males. conclusions: although exercise tolerance improved in all patients fol- lowing the short term intervention the increase in percentage body fat significantly exceeded the increase in percentage lean muscle mass (p \ . ). this study has prompted the unit to assess if modification of the current diet in conjunction with the short term training program will affect the body composition of our patient population and yield gains in exercise tolerance, decrease duration of stay and increase patient satisfaction. p single institution functional imaging in aiding diagnosis and communication in people presenting with memory problems mark murphy, lisa lavelle, diarmuid o’shea, ronan killeen, orla collins, graham hughes, kate murphy st. vincent’s university hospital, dublin, ireland background: fdg-pet imaging is costly and will become increas- ingly available. it is now included in the new diagnostic criteria for dementia (mckhann et al. ). it is also useful in the differential diagnosis, and supports communication with the patient and their family methods: a retrospective evaluation of the first patients to have fgd pet scans was conducted. we reviewed outpatient records, assessed whether cognitive assessment had been performed prior to fdg pet, and correlated clinical assessment with fdg pet findings. cognitive assessment tools accepted included mmse, moca, ad- denbrooks or amts. results: ten males, four females, aged – years with a mean age of . years, were reviewed. three scans were normal. of those three, two patients had clinical and objective evidence of cognitive impairment while one had normal cognition. eleven scans were abnormal and confirmed the suspicion of dementia. seven patients had alzheimers type dementia, two had frontotemporal dementia and one lewy body type dementia. of these eleven, seven had objective cognitive impairment, two were normal and one patient had no formal assessment of cognition. conclusion: our experience to date has found this to be a useful adjunctive tool that aids diagnosis and clarity of communication with families. it cannot be used in isolation. fdg pet will be a useful adjunct to the diagnostic challenges posed by older people referred with cognitive problems. as it is a costly test, the scan should only be performed following appropriate clinical examination and formal cognitive assessment. p zoledronic acid for osteoporosis in an ever-ageing population, who should we be treating? fiona o’sullivan , caroline ryan , navneet ramlaul , kathleen burke , margaret o’ connor , catherine peters , declan lyons university hospital limerick, limerick, ireland; st camillus’ hospital, limerick, ireland background: the horizon trials proved annual intravenous (iv) zoledronic acid to be efficacious and safe in the treatment of osteo- porosis over a years period. it is used for those who cannot tolerate or don’t respond to oral therapy. to assess real-world outcomes with iv zoledronate, an observational study was undertaken. methods: chart review and database-analysis (spss v ) of all referrals to a bone health nurse specialist for osteoporosis treatment with zoledronate from to was undertaken retrospectively. primary outcome was number of treatments completed. secondary outcomes were adverse reaction and bone mineral density (bmd) changes at months. results: patients were examined, female. had a documented fracture history. completed one treatment, completed two and ( %) completed three treatments. mean (sd) age of those completing to three years was . ( . ), charlson index was . ( . ) and average number of medications per patient was . ( . ), as compared with a mean age of . ( . ), p = . , charlson index of . ( . ), p = . , and average number of medications . ( . ), p \ . , in those not completing years. of the remaining , ( %) died within year of a treatment. a further were dead on follow-up, median time to death months (iqr – ). failed to complete treatment for other reasons including adverse reaction (n = ); increased frailty (n = ). follow up bmds (n = ) showed a . % absolute improvement in spine bmd but failed to show improvement in total hip. conclusion: in patients died before receiving a second dose of iv zoledronate (as compared with in during the horizon-recur- rent trial) with co-morbidity rather than age being more closely associated with failure to continue. observational studies such as this call to question the reproducibility of clinical trial outcomes in older, potentially frail cohorts. health and ageing p intravenous stroke thrombolysis and antiplatelet timing (iv stat) audit anna louise alexander, enda kerr royal victoria hospital, belfast, uk background: the initial period following stroke thrombolysis is criti- cal with patients at high risk of both haemorrhage and further ischaemic events. uk-rcp national clinical guideline for stroke recom- mends every patient treated with thrombolysis should be started on an anti-platelet after hours unless contraindicated. the aim of this review was to assess compliance with this recommendation. methods: data was gathered retrospectively on all patients who received intravenous thrombolysis in a large tertiary referral stroke centre in belfast, over a month period. we assessed timing of thrombolysis, repeat imaging and administration of anti-platelet therapy. results: patients received intravenous thrombolysis in this time period. % of patients received thrombolysis between am and pm and % ‘‘out-of-hours’’. % of patients had follow up imaging between am and pm and % in the ‘‘out-of-hours’’ per- iod. % had repeat imaging less than hours following thrombolysis, % – hours following thrombolysis and % greater than hours following thrombolysis. % of patients had some form of haemorrhage on repeat imaging, however, only % were precluded from receiving anti-platelet therapy during admission. ir j med sci ( ) (suppl ):s –s s all patients for whom there was no contraindication received anti- platelet therapy during admission. % of patients received anti- platelet medication – hours following thrombolysis, % – hours, % – hours, % – hours following throm- bolysis and anti-platelet therapy was contraindicated in %. conclusions: all patients who did not have a contraindication received anti-platelet therapy following thrombolysis for acute stroke. a proportion of patients received the anti-platelet medication greater than the recommended time frame after thrombolysis. we would recommend education of the multi-disciplinary team with regards to the necessity and timing of anti-platelet therapy following throm- bolysis. another area which could be reviewed is the provision of radiology services and timing of repeat imaging to further facilitate adherence to this guideline. p are elderly patients with complex needs accessing comprehensive geriatric assessment and mdt input in our current amu admission service? jane anketell, christopher speers royal victoria hospital, belfast, uk background: the silver book recommends that every elderly patient presenting with complex needs should receive a complex geriatric assessment (cga); leading to better outcomes for this population. our amu service does not have capacity for a geriatrician to look after all those admitted who meet this criteria—many are triaged to the acute medical team. we audited whether those who met criteria for cga assessment accessed it. we considered whether document- ing ‘frailty syndromes’ on admission, as defined by the silver book, could help select the most appropriate patients for geriatric care. methods: data was collected on patients aged over on the acute medical take during january . we designed a proforma distin- guishing patients by age and a patient identifier. it recorded time of admission, location from which admitted, presenting complaint, working diagnosis, number of frailty syndromes, and team to which triaged. whether there was mdt input within the first hours was documented. results: patients audited were aged between and years, out of had one or more frailty syndrome. patients were admitted under the care of the elderly team. % of patients who ‘qualified’ for cga did not receive access to this service. the number of frailty syndromes did not correlate with triage choices. % of those triaged to geriatrics received mdt input within hours, in contrast to % in other teams. conclusion: ideally we would have a separate amu area dedicated to caring for the elderly, with geriatricians taking the lead. accepting the limitations to our service currently, documenting frailty syn- dromes on admission as a marker of complexity may help chose those who would most benefit from cga. teaching for trainees rotating through amu on issues relating to caring for elderly patients should help other teams to consider mdt input earlier. p assessment of falls risk within the medical admission unit christopher speers, jane anketell royal victoria hospital, belfast, uk background: falls are an important member of the frailty syn- dromes, and carry a significant burden on the health service in terms of morbidity and mortality, as well as financial cost. recent adverse incidents had identified poor levels of documentation around fall risk assessment in our hospital, so we audited the current practice within our medical admission unit (mau), aiming to identify to our current practice versus the current nice guidelines. methods: we used the nice guideline cg to identify standards, and collected data on patients aged over years admitted to mau during the month of january using a proforma sheet. we also included measures recommended by the fallsafe program. results: patients were audited with an age range of – years. of these patients % were asked about falls on admission and % of these went on to have basic screening questions asked. between and % of patients had an ecg, were asked about incontinence, fear of falling, and had night sedation reviewed. however, only – % of patients had a call bell within reach, cognitive assess- ment, assessment of gait and balance, urinalysis, or osteoporosis assessment. conclusions: this audit highlighted that although the initial screen- ing questions are being carried out on admission to our mau, those identified as being at higher risk of falls did not go on to have a complete investigatory workup. the audit recommends that the unit embraces the evidenced based fallsafe program; a falls prevention program with both risk assessment and interventions to reduce the incidence of falls within the department. p the role of crp in acute hip fracture surgery padraig bambrick, louise brent, john cooke, george pope, riona mulcahy university hospital waterford, waterford, ireland background: c-reactive protein (crp) is a non-specific acute phase reactant commonly used to diagnose infection and inflammatory disease, and to monitor response to treatment. it is also thought to quantify the degree of tissue damage and invasiveness of a procedure, and reflect peri-operative stress. the literature suggests that a rise in crp peaks at hours post-surgical trauma. data on the extent of the crp rise remains limited. the aim of this study was to document pre- and post-operative crp levels in acute hip fracture surgery to see if they can be reliably used to track post-operative inflammation versus infection. method: we undertook a retrospective analysis of crp levels pre and post-acute hip fracture repair in a random sample of patients from july to march . this involved retrieval of crp levels from our laboratory computer system and analysis of clinical notes including details of type of surgery, peri-operative infection and existing co-morbidities. results: within our patient group, the mean pre-operative crp was . (range . – ). there was a mean increase of in crp levels on day (compared to pre-op crp). this did not change significantly by day . on day the crp had dropped to below baseline pre-op levels. patients with post-operative infection showed a mean crp rise of . , compared to . in those without infection. patients with a delay to surgery also had a large increase in their crp pre-operatively. conclusions: the role of crp in acute orthopaedic trauma needs to be further clarified. a significant increase is noted post operatively s ir j med sci ( ) (suppl ):s –s even in patients with a high pre-operative crp. the crp appears to rise as a result of the fracture pre-operatively, and increases further following surgery. crp returns to baseline by day in uncomplicated surgery. we would like to prospectively investigate this further. p think delirium, write delirium, treat delirium! an e-learning collaboration to improve detection, diagnosis and management of delirium aileen barrett , sean kennelly , aoibhinn lynch , aoife nı́ chorcoráin , niamh o’regan royal college of physicians of ireland, dublin, ireland; adelaide and meath hospital, tallaght, dublin, ireland; hse dublin north city/north west, dublin, ireland; south lee mental health services; department of psychiatry, university college cork, cork, ireland; centre for gerontology and rehabilitation, university college cork, cork, ireland background: educational interventions may have a positive effect on delirium detection, prevention and patient outcomes. the aim of this project was to devise a novel e-learning module to improve detection, diagnosis and delirium management among all doctors training in irish healthcare settings. methods: this delirium e-learning module was developed by four specialist clinicians as part of a collaboration between the royal college of physicians of ireland and the college of psychiatrists of ireland. best-practice principles in online education were used to develop a set of learning outcomes and to agree the key messages of the module. the content was developed using internationally accepted guidelines, up-to-date evidence and care principles as a reference. results: the project resulted in a -minutes e-learning programme, presented in four sections with stop/start functionality to maximise ‘user-friendliness’. memory aids were developed to facilitate learn- ing, including ‘fiat’ (standing for the cardinal signs of delirium: fluctuating course, inattention, acute onset and temporal relationship to illness) and the phrase ‘think delirium, write delirium, treat delirium’. an algorithm for initial management was also devised. video clips and interactive quizzes were designed to illustrate the fluctuating pattern of delirium and to prevent misdiagnosis, particu- larly focusing on the most common but often subtle hypoactive presentation. the module content was peer-reviewed by an indepen- dent panel of five academic clinicians. conclusion: the aim of this project was to provide trainees and all doctors with a cohesive and streamlined approach to delirium detection and diagnosis. prevention and management of this signifi- cant health problem is dependent on effective multi-disciplinary care, mirroring the inter-professional nature of this e-learning collabora- tion. follow-up workshops for trainees in medicine and psychiatry will take place in autumn , and will focus on the practical aspects of cognitive screening and problem-based discussions on complex clinical scenarios and issues such as capacity. p a consecutive cohort study of short cognitive tests to screen for dementia in older people on admission to hospital: the temporal orientation score and the -item cognitive impairment test aoife barrett , vanessa browne , edmund manning , suzanne cahill , john linehan , kathleen o’sullivan , noel woods , david meagher , aoife nı́ chorcorain , niamh o’reagan , david william molloy , suzanne timmons centre for gerontology and rehabilitation, school of medicine, ucc, cork, ireland; dementia services information and development centre, st. james’s hospital, dublin, ireland; services for older people, hse south, cork, ireland; school of mathematical sciences, ucc, cork, ireland; centre for social policy studies, ucc, cork, ireland; department of psychiatry, university of limerick, limerick, ireland; cork university hospital, hse south, cork, ireland background: cognitive impairment, including dementia, is common among older patients in acute hospitals. the mini mental state examination (mmse) is limited by its duration and poor utility in detecting mild cognitive impairment. the six-item cognitive impairment test ( cit) and temporal orientation score (tos) are quick and simple screening tests for cognitive impairment. we aimed to assess the diagnostic accuracy of these shorter screening tools, in detecting dementia in older hospitalised patients. methods: as part of a prospective cohort study of dementia prevalence (cork dementia study), hospital inpatients of [ years were assessed using the standardised mmse (smmse), cit and tos on admission. patients with admission smmse scores of c / were considered con- trols (estimated % missed dementia diagnosis rate, travers et al. ). lower-scoring patients had detailed delirium, depression and dementia (clinical dementia rating, cdr) assessments, with ultimate expert panel consensus diagnosis of dementia; or non-dementia, which included ‘‘cognitive impairment’’ (classical mild cognitive impairment, learning impairment, delirium, etc.) and controls. experts were blinded to cit and tos scores. results: of patients completing all three tests, ( . %) had dementia. given its use in defining controls, unsurprisingly the smmse had a diagnostic accuracy of . % to detect dementia versus non- dementia. however, the cit and tos performed similarly well ( . and . %, respectively). interestingly, the cit surpassed the tos and smmse in differentiating ‘‘cognitive impairment’’ from dementia, with a diagnostic accuracy of . % and auc of . , compared to . % and . for smmse, and . % and . for tos. both independent tests showed strong associations with dementia severity (i.e. cdr), r = . , p \ . (tos), and r = . p \ . ( cit). conclusions: the cit marginally outperformed the tos for dementia screening. both tests perform very well in older hospitalised patients and, given their brevity, should be considered for routine in- patient cognitive screening. reference: . travers c, byrne g, pachana n, klein k, gray l ( ) prospective observational study of dementia and delirium in the acute hospital setting. int med j ( ): – p bisphosphonate related osteonecrosis of the jaws in the osteoporotic patient anna beattie , j bernard walsh , miriam casey , kevin mccarroll , leo fa stassen department of oral and maxillofacial surgery, dublin dental university hospital, dublin , ireland; mercer’s institute for research on ageing, st james’s hospital, dublin , ireland background: bisphosphonate related osteonecrosis of the jaws (bronj) was first described in and is a recognised complication ir j med sci ( ) (suppl ):s –s s of treatment with intravenous bisphosphonates. bronj in relation to oral bisphosphonates is a rarer event. reported incidences vary but are estimated to be . – . % [ ]. recent case reports have described the resolution of areas of bronj in patients treated with recombinant parathyroid hormone. it has been suggested that the anabolic effects of pth may have a role to play in managing bronj. this series describes five cases of osteonecrosis of the jaws, in irish patients, who have taken oral bisphosphonates for osteoporosis. methods: patients with bronj, who presented to the dublin dental university hospital, were referred to the osteoporosis clinic in sjh, for a work-up, including dxa scan and bone markers. if it was clinically appropriate, the patients were started on pth (forsteo). results: five patients were identified, who had developed areas of osteonecrosis in the jaws following dental extractions. four of the patients had been taking an oral bisphosphonate, which was subse- quently stopped, at the time of the extraction. the fifth patient was on denosumab. dxa scans showed all five patients to be osteoporotic. bone markers, including ctx, osteocalcin and p np, were not suppressed in the patients who had taken bisphosphonates. bone markers were suppressed in the patient currently on denosumab. three of the patients were noted to have co-morbidities, including systemic lupus, scleroderma and temporal arteritis. two of the patients were on long term steroids. conclusions: bronj is rare but significant condition. this case series indicates that there is an increased risk of bronj in patients with complex medical histories. the patients on pth will be moni- tored with regard to their oral lesions. reference: . yamashita j, mccauley lk ( ) antiresorptives and osteone- crosis of the jaw. j evid based dent pract : – p the effect of a balance exercise class on activity limitations in people with parkinson’s disease anne belton , richard walsh , sinead murphy , dominick mccabe , rose galvin tallaght hospital, dublin , ireland; royal college of surgeons in ireland, dublin , ireland background: postural instability is one of the four cardinal signs of parkinson’s disease (pd) and impacts on balance and can lead to falls. people with pd (pwpd) experience increasing disability, reduced mobility, fear of falling which leads to reduced quality of life ( ). pharmacology has been the cornerstone of treatment thus far, but maybe limited in treating postural instability. increasing research suggests that physiotherapy and exercise improves balance and may reduce falls ( ). some evidence points to the usefulness of dual task training for balance and gait deficits in pwpd. the aim of this study was to assess the impact of a week balance exercise class on activity limitations in pwpd. method: twenty-four community dwelling pwpd were recruited from the physiotherapy waiting list of an acute hospital. a single blind randomised controlled trial was conducted comparing balance exercise class versus control. balance was measured using the brief besttest. secondary measures included activities of daily living (adl) and motor section of the movement disorder society-unified parkinson disease rating scale (mds-updrs), timed up and go test (tug), tug-c and tug-m, falls efficacy scale (fes), par- kinson’s disease questionnaire (pdq- ) and a falls calendar. paired t test and independent t tests were utilised to determine if the change in scores was significant. results: there was a significant improvement in the adl section of mds-updrds between groups (p = . ) and within groups for the intervention (p = . ). there was a significant improvement in balance in the intervention group before and after the study (p = . ). there was a trend towards improvement in the tug and tug-m for the intervention group. conclusion: this intervention demonstrated significant improvement in the adl section of mds-updrs between groups and non-sig- nificant improvements in balance and functional mobility for the intervention group. references: . allen ne, sherrington c, paul ss, canning cg ( ) balance and falls in parkinson’s disease: a meta-analysis of the effect of exercise and motor training. movement disorders ( ): – . . tomlinson cl, patel s, meek c, clarke ce, stowe r, shah l, sackley cm, deane kho, herd cp, wheatley k, ives n ( ) physiotherapy versus placebo or no intervention in parkinson’s disease (review) cochrane database systematic reviews cd . doi: . / .cd .pub . p fuse: falls and unexplained syncope in the elderly, the utility of implantable loop recorders jaspreet bhangu , patricia hall , ciara rice , geraldine mcmahon , peter crean , richard sutton , rose ann kenny st. james’s hospital, dublin, ireland; trinity college dublin, dublin, ireland; imperial college, london, uk background: falls are the most common cause of injury and hos- pitalisation in older adults. the evidence for extended cardiac monitoring in falls risk assessment is not yet established, despite emerging evidence that cardiac arrhythmias may cause falls.there is strong evidence for an overlap for symptoms of syncope and falls.the implantable loop recorder (ilr) is an effective tool for the diagnosis of cardiogenic causes of unexplained syncope. the objective of the study is to verify the utility of cardiac loop recorders to detect cardiac causes for unexplained falls in patients over the age of years. methods: a prospective, observational study was carried out in an urban university teaching hospital. patients were recruited from the emergency department and outpatient clinics. cognitively intact (mmse [ ) patients with two or more unexplained falls in the preceding year underwent a comprehensive falls assessment. this included a gait, vision and balance assessment, active stand, tilt table test and carotid sinus massage. an ilr was then implanted in patients with no clear attributable cause. ilr data was remotely transmitted and monitored on a daily basis. institutional ethics committee approval was granted. results: seventy patients, mean age of years (range – years) had ilr implants. twenty-three ( %) patients demonstrated cardiac rhythm abnormalities including two with new atrial fibrillation. in ( %) patients falls were attributed to cardiac disorder; ( %) required a pacemaker and electrophysiology and ablation. conclusions: ilrs represent effective diagnostic tools for the detection of cardiac causes of unexplained falls in elderly patients. further randomized control trials are now needed to confirm if early detection of cardiac causes using ilr prevents future falls in elderly patients. s ir j med sci ( ) (suppl ):s –s . / .cd .pub p the prevalence of gait disorders and stravinsky syndrome in an age-related day hospital robert briggs, teresa quinn, siobhan quinn, des o’neill charlie o’toole day hospital, age-related health care, tallaght hospital, dublin, ireland background: chronic stroke disease is common among older people but is infrequently recognized or defined. a new syndrome, stravin- sky syndrome, has been described for combined gait, cognitive and swallow disorders of presumed vascular origin. we aimed to profile a consecutive cohort of patients referred to the age-related day hospital (ardh) to find the prevalence and aetiology of gait disorders there, as well as the number likely to have stravinsky syndrome. methods: we collected data from consecutive patients referred to the ardh. gait was assessed both by a physiotherapist and physician and gait abnormalities were subdivided based on the level of senso- rimotor involvement. patients were also assessed for the presence of cognitive impairment and swallow disorders as per standard practice. results: % ( / ) of the patients were female. the mean age was . ± . years. % ( / ) of the patients had an abnormal gait. the prevalence of swallow disorders was % ( / ) while % ( / ) had dementia. % ( / ) had the stravinsky syndrome of chronic stroke disease, with a triad of swallow impairment, cognitive impairment and gait disorder; while an additional / ( %) had a combined gait disorder and cognitive impairment of presumed vas- cular origin. % ( / ) of the gait disorders were lower level, predominantly osteoarthritis; % ( / ) were middle level; % ( / ) were higher level gait disorders or vascular gait dyspraxia (vgd). % ( / ) had mixed level gait disorders. conclusion: this study demonstrates a high prevalence of gait disor- ders, with associated cognitive and swallow deficits, with over one-fifth of the cohort having at least two of the features of stravinsky syndrome. the recognition of chronic stroke disease is important given the fact that minor improvements and relatively simple interventions can make a significant difference to quality of life in the older person. p the effect of a national awareness campaign on knowledge of atrial fibrillation in the irish population robert briggs, ali chatharoo, ruth dwyer, breffni drumm, vivienne ralph, des o’neill, sean kennelly, tara coughlan, ronan collins stroke service, age-related health care, tallaght hospital, dublin, ireland background: one-third of strokes in ireland are due to atrial fibril- lation (af). af is detectable and treatable and is a condition amenable to a screening programme. however, any national screen- ing programme needs both public understanding and engagement. the irish heart foundation launched a poster and radio af awareness campaign in november . we examined public knowledge of af both before and after this campaign. methods: we completed a survey in a nationally representative population of , people before and , people after the awareness campaign and compared the results. the questions asked included: have you ever heard of atrial fibrillation or ‘a fib’? what is atrial fibrillation? do you know the health risks associated with atrial fibrillation? results: prior to the campaign, % ( / , ) of those surveyed were ware of af. there was no statistically significant change in this after the campaign. % ( / ) of those aware of af correctly identified it as an ‘irregular heartbeat’ prior to the campaign. after the campaign, % ( / ) correctly identified af (p \ . ). prior to the campaign, % ( / ) of those aware of af identified it as a risk factor for stroke, compared to % ( / ) after the campaign (p . ). conclusion: this study demonstrates the generally poor awareness of af in the irish population. the initial phase of the national awareness campaign did not improve public awareness. this may have been because the campaign was not sustained, with radio adverts stopping after months due to funding issues. additionally, the concept of af is quite complex and less visual than the fast campaign so an intensive awareness campaign that is funded to sustain itself, as well as having an understandable visual impact is required. p admission hyperglycaemia predicts outcomes in acute stroke ciaran costello, eileen fan, imelda noone, serena hatton, graham hughes, diarmuid o’shea, morgan crowe, joseph browne st vincent’s university hospital, dublin , ireland background: diabetes mellitus (dm) and impaired glucose tolerance (igt) are independent risk factors for stroke and adversely influence the recovery of stroke patients. early hyperglycaemia post-stroke is common and is associated with poor clinical outcomes. guidelines from the american diabetic association state a serum fasting glucose of . mmol/l or above should be considered abnormal and have appropriate follow-up investigation. methods: we analysed data from an inpatient stroke registry of all patients admitted with acute stroke (n = ) and compared results from an audit between and (n = ). we hypothesised that elevated admission glucose levels (agls) would be indepen- dently associated with increased mortality, symptomatic intracerebral haemorrhage and poor functional outcomes. results: the mean age of the group was . (± . ) years. the prevalence of dm was . %, with ( . %) patients having an agl [ . nmol/l. discharge outcomes were as follows: . % home, . % died, % extended nursing care. agls [ . nmol/l were more likely to be associated with a discharge to extended nursing care or death (p \ . ) and symptomatic intracerebral haemorrhage (p \ . ). % patients with an agl [ . nmol/l died with a further % requiring extended nursing care. comparison to previous data showed that there was no statistically significant difference between age and glucose levels on admission, mean age was (± . ) years, with ( . %) having a glucose level [ . nmol/l. there is a higher prevalence of dm in stroke patients compared to data from years ago ( . vs. . %, p = . ). conclusion: the incidence and prevalence of hyperglycaemia and dm has not significantly changed in years. acutely elevated glucose levels were associated with poor outcomes i.e. death, exten- ded nursing care or intracerebral haemorrhage. admission glucose level may be a surrogate marker of brain infarction severity rather than a causal factor. ir j med sci ( ) (suppl ):s –s s p potentially inappropriate medications in older hospitalised patients karen sheehan, diarmuid o’shea, morgan crowe, graham hughes, joseph browne st. vincent’s university hospital, dublin , ireland background: inappropriate prescribing in elderly patients is an important cause of morbidity and mortality. polypharmacy is defined as more than medications. previous studies have shown that acutely ill hospitalised patients have a high prevalence of inappropriate pre- scribing and a high rate of errors. evidence from well-controlled studies suggests that multidisciplinary teams and clinical pharmacy interventions can modify suboptimal drug use in older adults. methods: we performed a point prevalence audit of medications pre- scribed in medical patients. basic demographics, reason for admission and co-morbidities were analysed. we applied the stopp-start criteria to this group and identified two high risk groups of patients i.e. those with a history of falls and those with a history of cognitive impairment. results: patients were assessed with a mean age of years. ( . %) had or more medications prescribed, with ( %) having more than medications prescribed. infection ( %), stroke ( %) and falls ( %) were most likely cause for admission. ( . %) patients had a history of falls and ( . %) had a history of cognitive impairment. mean age of fallers and those with cognitive impairment were and years respectively. for the faller group, hypnotics and antipsychotics were prescribed more frequently com- pared to overall group (p \ . ) and had a lower rate of benzodiazepine use. % of patients with a history of fall had bone health medications prescribed. the cognitive impairment group had a higher rate of antipsychotic use compared to overall group (p \ . ). conclusion: polypharmacy was a common finding in this group of elderly medical inpatients, particularly in those with a history of falls and cognitive impairment. fallers and those with cognitive impair- ment are a vulnerable and frail group who are more susceptible to the consequences of inappropriate prescribing. p ageism in parkinson’s disease studies mary buckley, desmond o’neill the adelaide and meath hospital, tallaght, dublin, ireland background: age is the strongest risk factor for development of parkinson’s disease and prevalence rises from % in those over years of age to % of the population over . rehabilitation through occupational therapy (ot), physiotherapy (pt) and speech and language therapy (slt) has been shown to be of some benefit to patients. however, it is not clear whether the study populations were affected by ageist recruitment paradigms. the aim of this study was to assess the age profile of studies of therapy modalities in parkinson’s disease methods: all randomised control trials (rct) on pt, ot and slt in parkinson’s disease in the cochrane database were included. results: rcts were identified. were excluded, as they did not have baseline characteristics recorded. the mean age of patients was . years (range . – . ). rcts had documented exclusion criteria: dementia in %, other neurological disease such as stroke in %, not independently mobile in %, musculoskeletal disease and cardiovascular disease in % each. almost one-fifth ( %) had age as an inclusion criterion with one study including patients up to age , up to , and up to . conclusions: this study shows a clear discrepancy in the mean age of those included in rehabilitation studies compared with the mean age of pd patients. age and comorbidities were common causes of exclusion, and limit the congruence between research and practice. ageist strictures on research with adults need to be eliminated. p a review of acute orthopaedic admissions in older patients mary buckley, sarah mello, josie clare cork university hospital, cork, ireland background: studies have shown that input from a geriatrician reduces length of stay, postoperative complications and mortality in patients with hip fractures. in order to help establish the potential case load for an orthogeriatrician, we looked at all acute orthopaedic admissions over the space of a year to our hospital. methods: the orthopaedic surgeons record acute admissions on a database. information regarding the over -year-old patients was accessed from this database. data was analysed for the month period may –may . results: there were , acute orthopedic admissions, of which , ( . %) were over the age of with a mean age years (range – ). ( %) had hip fractures, all of whom had surgery. hip fracture and a concurrent radial, humerus or olecranon fracture accounted for a further ( . %) patients. ( %) had distal radius fractures and ( . %) vertebral/pelvic fractures. ( . %) of patients had multiple fractures. ( . %) patients had metastatic disease encompassing pathological frac- tures, vertebral mets requiring spinal decompression and lytic lesions requiring surgical stabilisation. ( . %) had infection/sepsis–septic arthritis, osteomyelitis, cellulitis or discitis. ( . %) were admitted with post op complications-pain, wound dehiscence, hip infection, surgical failure, post op dislocation or periprosthetic fracture. ( . %)were investigated for post op dvt. ( . %) had back/hip/knee pain not attributable to fracture or infection. a -year-old male was admitted with an accidental gunshot wound to his foot. conclusions: this simple study shows the wide range of conditions resulting in acute orthopaedic admission. fragility fractures account for the majority of admissions, but there are a significant number of other diagnoses. the majority of these patients have a number of co-morbidities, functional deterioration and would also benefit from orthogeriatric input. p preliminary hip fracture outcome data in different cohorts of patients mary buckley, sarah mello, ann o’ mahony, josie clare cork university hospital, cork, ireland background: the irish hip fracture database (ihfd) is an audit of care standards and outcomes for patients aged years and over. the preliminary ihfd report summarises data collection on out of , hip fracture patients. in april we commenced pro- spective collection of data for all hip fracture patients with the primary aim of entering data into the irish hip fracture database. we are also interested in place of residence at the time of admission, functional ability and outcome, discharge destination and length of stay in the acute hospital and rehabilitation unit. methods: data is collected during the hip fracture patient’s admis- sion and includes standard data for the ihfd. s ir j med sci ( ) (suppl ):s –s results: patients presented with hip fracture during the first weeks of data collection. % female, mean age years (range – ), patients were under . ( %) patients were admitted directly to the orthopaedic team from ed, ( %) were initially admitted under the general medical team before the hip fracture diagnosis was established, ( %) fell during an inpatient stay under other teams. ( %) were living within the catchment area at home before admission, ( %) patients from this group were transferred to a rehabilitation bed, ( %) returned directly home and remain in hospital awaiting nursing home (nh) care. ( %) were nh resident before admission, returned directly to the nh and patient went for rehab. ( %) were visiting the locality from elsewhere in ireland, ( %) were visiting from overseas. ( %) patients died during their admission. conclusion: we are continuing to collect data on all hip fracture admissions. with approximately hip fractures per annum we will be able to expand our knowledge of outcomes for the different groups of patients described above. p rehabilitation of pelvic fractures colm byrne, caitriona tiernan, roman romero-ortuno, lisa cogan royal hospital donnybrook, dublin, ireland background: increasing rates of osteoporosis and patients presenting with falls have led to an increasing number of patients presenting with pelvic fractures. despite this, there are currently no published studies on outcomes from rehabilitation of patients with pelvic fractures. our aim was to compare a cohort of patients with pelvic fractures pre- senting for rehabilitation to patients with hip fractures. methods: a retrospective chart review of patients with pelvic fractures and randomly selected patients with hip fractures who presented to a rehabilitation hospital between january and april was performed. chi-square testing, fisher’s exact test or mann–whitney u was performed as appropriate on the data collected to compare the two groups. results: the mean age was . years (sd . ) for pelvic and . years (sd . ) for hip (p = . ). % of pelvic were female, compared to . % of hip (p = . ). mean length of stay in rehabilitation was significantly longer in the pelvic group (pelvic . days, sd . ; hip . days, sd . ; p = . ) and there was a higher complication rate (pelvic . %, hip . %; p = . ). mean barthel index (bi) was lower on admission in the pelvic group (pelvic . , sd . ; hip . , sd . ; p = . ). however there was no significant difference in bi on discharge (pelvic . , sd . ; hip . , . ; p = . ). conclusion: patients with pelvic fractures are more likely to be female and there is a trend towards being older than patients with hip fractures. despite having a lower bi on admission, having a higher complication rate and taking longer to rehabilitate, they rehabilitate to the same bi as patients with hip fractures. therefore the rehabilitation of patients with pelvic fractures is worthwhile. p attitudes to importance of outcome measures in cardiovascular prevention trials michelle canavan , andrew smyth , stephanie robinson , irene gibson , eamon mulkerrin , martin o’donnell university college hospital, galway, ireland; national university of ireland, galway, ireland; croi the west of ireland heart foundation, galway, ireland background: selection of outcome measures in clinical trials should be informed by their relevance and importance to populations inclu- ded in studies. cardiovascular prevention trials usually prioritize major vascular event outcomes, with considerably less attention to cognitive and functional outcomes [ ]. we aimed to explore views on relevance and importance of various outcome measures to a cohort of older adults. methods: a cross-sectional survey of active retirement groups and adult outpatients attending clinics in a university hospital was con- ducted. participants ranked statements on ( ) meaning of successful ageing, ( ) clinical trial outcomes and ( ) future concerns, in order of importance and proportions were compared. results: overall, / ( %) people completed the survey. of these, ( %) were aged [ years (mean age ). % were female, % required assistance for c activity of daily living and % were independently mobile. comorbidities included: hypertension ( %), diabetes ( %), hypercholesterolaemia ( %), smoking ( %), previous stroke ( %) and previous myocardial infarction (mi) ( %). respondents selected the following as most important when asked about the meaning of successful ageing: maintaining indepen- dence ( %), avoiding major illness ( %), living as long as possible ( %), having a good family life ( %) and avoiding the nursing home (nh) ( %). when asked which outcome was most important in clinical trials of new antihypertensive drugs respondents selected: stroke ( %), dementia ( %), dying ( %), requiring a nh ( %) and mi ( %). when asked what concerns them most about the future, respon- dents selected dementia ( %), dependence on others ( %), stroke ( %), dying ( %), requiring a nh ( %), cancer ( %), mi ( %). conclusion: our findings suggest that cognitive and functional out- comes are most important to older adults. of major vascular events, stroke is most important. reference: . evans et al ( ) functional outcomes for clinical trials in frail older persons. j gerontol a biol sci med sci : – p audit of stroke management at a university teaching hospital lisa brandon, michelle canavan, stephanie robinson, tomas griffin, amjad khan, patricia galvin, shaun o’keeffe, martin o’donnell, eamon mulkerrin, thomas walsh university college hospital, galway, ireland background: current stroke management emphasizes rapid detection and diagnosis and reduction of long term morbidity and mortality through timely thrombolysis where appropriate and stroke unit (su) care. this study aimed to re-evaluate current stroke management in a university teaching hospital and compare to previous audits in ( , ). methods: retrospective cross-sectional analysis of admissions between may and november was conducted. results: admissions reviewed included: ( %) ischemic strokes ( %) intracranial haemorrhages and ( %) transient ischemic attacks (tias). ( %) were male and mean age was . . of admissions, ( %) patients presented within . hours of symp- tom onset ( in ) and ( %) were thrombolysed. mean time to thrombolysis from onset was minutes ( in ). average ir j med sci ( ) (suppl ):s –s s time from arrival to ct brain was minutes; with mean door-to- needle-time of minutes ( in ). all patients had ct brain within hours of admission. ( %) were admitted directly to the stroke unit ( % ). of ischemic strokes ( %) received antiplatelet therapy within hours. of diagnosed with atrial fibrillation (af), ( %) had known af, of whom % were not anti-coagulated. multidisciplinary team (mdt) assessment within appropriate time frames has improved since . % of appro- priate patients had speech and language assessment within hours ( % in ). % of stroke patients received stroke nurse prac- titioner consultation which has enhanced mdt assessment. of discharges, ( %) went home and ( %) went to long term care ( and % respectively in ). conclusion: more stroke patients are presenting within the throm- bolysis window but onset-to-needle and door-to-needle times have increased. we need more efficiency in the in-hospital thrombolysis process to improve outcomes. direct access to su care has improved but more beds are needed to provide su care to all stroke patients. references: . mcdonnell m et al, audit of acute stroke care: from the emergency department to the acute stroke unit, ir j med sci ( ) (suppl ):s . canavan m, et al. closing the audit loop: stroke care in a university hospital three years on. ir j med sci ( ) (suppl ):s . p access to neuroimaging in dementia: a survey of specialists aurelia ciblis , marie-louise butler , arun bokde , paul mullins , des o’neill , jonathan mcnulty university college dublin, dublin, ireland; trinity college dublin, dublin, ireland; bangor university, bangor, uk background: neuroimaging is an important tool in the diagnostic workup of suspected cases of dementia; however, it is often under- utilised. the number of people with the disease is likely to rise to , by due to increased life expectancy, yet less than half of people with dementia are estimated to receive a formal diagnosis though an early diagnosis is essential for the provision of adequate treatment and care. the aim of the current survey was therefore to establish specialists’ access to neuroimaging in dementia. methods: the research design was a postal survey. geriatricians, old-age psychiatrists and neurologists nationwide were posted individual ques- tionnaires containing open and closed questions on access to neuroimaging in dementia. descriptive statistics were employed to analyse the data. results: the survey response rate was . % (n = ). most respondents ( . %) were geriatricians, . % were old-age psy- chiatrists and % were neurologists. the majority ( . %) were consultants. all specialists reported that they had access to computed tomography (ct), and most ( . %) had access to magnetic reso- nance imaging (mri). however, only . % had access to positron emission tomography (pet) and . % to single-photon emission computed tomography (spect). most clinicians ( . %) referred suspected cases of mild cognitive impairment (mci) or dementia for mri, followed by . % who referred for ct and . % who referred for pet or pet/ct. a total of . % of specialists reported that there were neuroimaging modalities they would like to have access to but did not. conclusions: results suggest adequate specialist access to mri and ct investigations for suspected cases of mci or dementia; however, access to other neuroimaging modalities including pet and spect appears to be limited yet these modalities are important, in particular regarding sub- type diagnosis. a lack of access to these neuroimaging modalities might limit diagnostic accuracy and impact upon treatment decisions. p is the mini-mental state examination on admission to an active rehabilitation unit beneficial in predicting duration of stay and discharge options? simon clifford, laura ann lambert, emma nolan, siobhan forman, dermot power cappagh national orthopaedic hospital, active rehabilitation unit, dublin, ireland background: the mini-mental state examination (mmse) is a brief questionnaire, scored out of , which has long been used to screen for cognitive impairment. screening using the mmse is performed in our active rehabilitation unit (aru). cognitive impairment may be a factor influencing both duration of stay and discharge planning options. this study aimed to investigate the predictive value of the mmse in our aru. methods: over a month period, the mmse was completed on patients admitted to the aru (mean age years, females, males) patients were classified according to their mmse score: – ‘‘severe impairment’’, – ‘‘moderate impairment’’, – ‘‘mild impair- ment’’, – ‘‘no impairment’’. the total duration of stay was calculated. the discharge locations were also defined, i.e. long term care (ltc), respite, or home (with or without home care packages (hcps). results: the mean mmse score was . (sd . ), range – . the spectrum of impairment was as follows; ‘‘severe impairment’’ %, ‘‘moderate impairment’’ %, ‘‘mild impairment’’ %, or ‘‘no impairment’’ %. in total, % of patients were discharged home. those with lower mmse scores were more likely to be discharged to ltc, or require hcps. mean duration of stay was days, (sd ) range – . mmse was inversely correlated (- . ) with duration of stay; ‘‘moderate impairment’’ mean duration days, ‘‘mild impairment’’ mean duration days, ‘‘no impairment’’ days. conclusions: this study found that there is a wide range of cognitive impairment on admission to our aru. those with lower mmse scores were more likely to go to ltc, or need greater home care support on discharge. lower mmse scores were more likely to have longer duration of stay. the mmse appears to be useful for pre- dicting duration of stay, and planning discharge options. p medical and surgical comorbidities on admission to an active rehabilitation unit simon clifford, laura ann lambert, joanne larkin, siobhan forman, dermot power cappagh national orthopaedic hospital, active rehabilitation unit, dublin, ireland background: medical and surgical comorbidities may be associated with a more complex clinical course, greater lengths of stay, worse outcomes, and increased financial burden ( ). this study aimed to examine the comorbidities of geriatric patients admitted to an active rehabilitation unit, to assess which conditions are most common, and what effect these may have on duration of stay. s ir j med sci ( ) (suppl ):s –s methods: over a month period, information was gathered on patients admitted to the active rehabilitation unit. these were assessed for medical and surgical comorbidities, based on both history and all available past medical information. comorbidities were grouped into ‘‘cardiac’’, ‘‘respiratory’’, ‘‘renal’’, ‘‘endocrine’’, ‘‘neurological’’, ‘‘gastrointestinal’’, ‘‘surgical’’ or ‘‘miscellaneous’’. each patient’s comorbidities and durations of stay were calculated. results: it was the norm for patients to have multiple comorbidities (mean , sd . , range – ). the most frequent comorbidity was cardiac. % of patients had comorbid cardiac issues; hypertension ( %), atrial fibrillation ( %), congestive cardiac failure ( %) and ischaemic heart disease ( %). % of patients had comorbid endocrine issues; diabetes mellitus ( %) and hypothyroidism ( %). % of patients had comorbid neurological issues; dementia/ cognitive impairment ( %). the correlation coefficient between number of comorbidities and duration of stay was . . conclusions: this study showed that medical and surgical comor- bidities are common in an active rehabilitation unit. the number of comorbidities was a poor predictor of duration of stay. active reha- bilitation is a valuable opportunity to optimise a patient’s comorbid conditions. increased knowledge and understanding of the most fre- quent comorbidities may allow for better allocation of resources, and improved outcomes. reference: . barnett k, mercer sw, norbury m et al ( ) epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. lancet : p effect of a multifaceted intervention on potentially inappropriate prescribing in older patients in primary care: a cluster randomised controlled trial (the opti-script study) barbara clyne , susan smith , carmel hughes , fiona boland , janine cooper , tom fahey royal college of surgeons in ireland, dublin, ireland; queen’s university belfast, belfast, uk background: potentially inappropriate prescribing (pip) (use of medicines that introduce a greater risk of adverse drug-related events where a safer, as effective alternative is available) is common in older people and can result in increased morbidity, adverse drug events and hospitalisations. the prevalence of pip in ireland in those aged c years is % with an associated expenditure of over € mil- lion. this study aimed to determine the effectiveness of a multifaceted intervention in reducing pip in irish primary care. methods: a cluster randomised controlled trial (rct) was conducted with gp practices based in the greater dublin area and patients with pip. practices were allocated to intervention or control arms after baseline data collection. intervention participants received a complex multifaceted intervention incorporating academic detailing, medicines review with web-based pharmaceutical treatment algo- rithms that provided recommended alternative treatment options, and tailored patient information leaflets. control practices delivered usual care and received simple, patient-level feedback on pip. primary outcomes were the proportion of patients with pip and the mean number of potentially inappropriate prescriptions. results: all practices were followed up, patients were lost. upon intervention completion, the proportion of patients with pip in the control group was . compared to . in intervention (adjusted odds ratio (or) . , % confidence interval (ci) . – . ). the mean number of pip drugs in intervention was . , compared to . in control (p = . ). investigating the number of pip drugs, the inci- dence rate for pip in control was . times the rate in intervention ( % ci . – . , p = . ). the intervention significantly reduced pip related to proton pump inhibitor prescribing (ppi) (adjusted or . , % ci . – . , p = . ) but not other drug specific outcomes. conclusions: opti-script was effective in reducing pip. the intervention effectiveness was primarily based on modifying ppi prescribing. p too much, too late: polypharmacy at end-of-life sarah coveney, nicola cornally, alice coffey, ciara mcglade, william molloy, edel daly, ronan o’caoimh university college cork, cork, ireland background: the let me decide (lmd) programme comprises advance care planning and palliative care education in long term care (ltc). currently the programme has been implemented as part of a research study in ltc sites in southern ireland. as part of the study, we looked at the issue of polypharmacy in end-of-life care (eolc). pol- ypharmacy in eolc in ltc is poorly understood, primarily due to a paucity of research in this area. although polypharmacy has many definitions, the most appropriate in the context of end-of-life care is the prescription and/or the administration of any medication that is not clinically indicated. this not only leads to adverse drug events, but has significant financial implications. we explored the extent of poly- pharmacy in this cohort with regard to number of medications prescribed regularly and as required. the appropriateness of these medications was determined using existing literature and clinical expertise. methods: following ethical approval, data were collected retro- spectively between july and may , from charts of deceased residents (n = ) in ltcs enrolled in the study. this was completed using a chart extraction tool, designed for this research. results: of residents charts reviewed, % had a diagnosis of dementia/stroke. the mean age was years. mean mmse score was . data indicates that the mean number of regular medications prescribed and administered to residents during the last week of life was . . of these, the mean number of inappropriate medications prescribed per resident was . . conclusion: polypharmacy in eolc is an emerging issue and is frequently overlooked in ltc. a major clinical implication from this research is the need for education for healthcare professionals regarding appropriate symptom based prescribing during the final stages of life. these results also have implications with regard to quality of life and health economics. p the benefits of a nurse-led secondary prevention clinic in a stroke service nicola cogan, ronan collins, suzanne greene tallaght hospital, dublin, ireland background: the world health organization (who) highlights the importance of lifestyle modification interventions other than the use of affordable, accessible and effective pharmacological treatments in the prevention of tia/stroke. risk factors which contribute towards % of all strokes are hypertension, unhealthy diet, physical ir j med sci ( ) (suppl ):s –s s inactivity, excessive alcohol intake, psychosocial stress, atrial fibril- lation, smoking, high cholesterol and diabetes. thus, appropriate secondary stroke prevention is required in modifying these risk fac- tors via educational intervention. methods: two documents were developed to support an individualised patient assessment, stroke secondary prevention clinic: patient assessment and the modified distress management system assess- ment. the patient population attending the nurse led secondary prevention clinic include, all patients admitted with tia/stroke under the stroke service and patients attending the rapid access stroke prevention/general stroke clinic. a record of onward referrals to the stroke mdt was maintained and a service user survey was completed to determine the benefits of the nurse led secondary prevention clinic results: patients have attended the clinic to date. of these % required onward referral ( % of which required referral to or more services). service user surveys were sent of which there was a % response rate. % of respondents reported an improved understanding of stroke and stroke risk factors following attendance at the clinic. % felt that any questions/concerns that they had were addressed during consultation and % reported making a positive lifestyle modification as a direct result of attending the clinic. conclusions: as results demonstrate, through attendance and indi- vidualised assessment at this clinic, the need for patients to have further treatment and onward referral is identified promptly post discharge, decreasing the risk of potential post-stroke complications. patients are educated to make positive lifestyle modifications thus reducing their risk factors for stroke. p neuromedical sequelae post-stroke suzanne greene, nicola cogan, robert briggs, tara coughlan, des o’neill, dominick mc cabe, sinead murphy, richard walsh, ronan collins tallaght hospital, dublin, ireland background: stroke is a major syndrome of later life: % of acute stroke admissions are aged [ . neuromedical sequelae are frequent among individuals with stroke, increasing length of hospitalisation, costs of care and presenting barriers to optimal recovery. the prevalence of these sequelae is under-documented in current irish clinical practice. methods: a review of data entered onto the national stroke register from consecutive acute stroke admissions to a dublin hospital for , including additional data fields on capturing both patients’ co- morbidities and neuromedical sequelae post-stroke. this data is compared to a review of neuromedical sequelae in an irish setting in and uk setting in . results: data available for patients of acute admissions. ( %) patients had a language/communication disorder, ( %) experienced pain, ( %) cognitive decline related to current stroke and ( %) patients discharged with new/aggravated urinary incontinence. nineteen ( %) patients had a delirium, ( %) had a fall and ( %) experienced shoulder pain. compared to previous studies there was a significant decline in rates of swallow disorder, mood disorder and uti. conclusions: communication disorders, pain and cognitive decline occur in almost a third of acute stroke patients individually. similar studies from s in ireland and uk before widespread adoption of stroke unit care show higher rates of urinary infection, depression and dvt. secular trends in stroke severity, engagement of geriatric medicine and nursing in irish stroke care, and stroke unit ethos and education of staff may play a part in early recognition and interven- tion to avoid such complications. p management of older ambulatory patients with chronic heart failure: are we ‘rate aware’? warren connolly, christine mccarthy, toddy daly, dermot power, joe duggan, lorraine kyne mater misericordiae hospital, dublin, ireland background: heart rate (hr) reduction improves survival in patients with systolic chronic heart failure (chf). the european society of cardiology chf guidelines recommend hr reduction to \ beats per minute (bpm). the aim of this study was to determine how ‘rate aware’ are physicians treating older patients with chf in a medicine for the older person (mftop) out-patient setting. methods: we reviewed charts of all consecutive patients attending our clinics in january and february . for patients with a diag- nosis of chf, we recorded hr, bp, medications, co-morbidities and barriers to hr control (e.g. hypotension, falls or other). results: of patients reviewed, ( %) had a diagnosis of chf: mean age years (range – years); % female. mean number of co-morbidities was (range – ) and % were on or more medications (mean ; range – ). % were receiving diuretics, % ace inhibitors/arbs, % mineralocorticoid receptor antag- onists and % b-blockers. no patient received ivabradine. only % of patients with systolic chf had a resting hr \ bpm and % had a bp \ / . over a quarter of these patients ( %) simultaneously attended a cardiology heart failure (hf) clinic. bp control in these patients was significantly better ( % had a bp \ / ; p \ . ) but only % had adequate hr control (similar to those attending mftop). no barriers to reduction in hr were documented. conclusions: we found that % of patients attending our clinic had a diagnosis of chf. these patients had a high burden of co-morbid disease and polypharmacy. over / of them were not adequately rate controlled whether attending our clinic or a cardiology hf clinic. given the known survival advantages in chf we need to improve awareness of hr reduction and explore barriers to achieving this in frail older patients. p how are we doing with our zzzs? a cross- sectional study of sleep hygiene and falls risk in an acute hospital setting warren connolly, muireann clifford, erin allison, aoife fallon, frances mc carthy mater misericordiae hospital, dublin, ireland background: benzodiazepine and non-benzodiazepine (z drugs) hypnotics are commonly prescribed in older people despite knowing that altered pharmacokinetics places them at risk of adverse effects including falls, fractures and psychomotor impairment. our aim was to determine prescribing practices for benzodiazepines and other hypnotic drugs for the management of insomnia in patients [ years in an acute teaching hospital setting. methods: we carried out a cross sectional audit on medical notes, nursing notes and medication prescriptions of all inpatients [ years on wards ( specialist geriatric medicine wards (sgw) and mixed (medical/surgical wards) over a day period. our audit was based on icd- criteria, nice guidelines and royal college of psychiatrists recommendations. the morse fall scale was used to assess falls risk. s ir j med sci ( ) (suppl ):s –s results: patient records were reviewed. the prevalence of pre- scribing of hypnotics was %. of the patients prescribed these medications % were male and the mean age was years (range – ). prescribing rates were lower on the sgw than on non sgw ( vs. %). potentially reversible barriers to sleep were noted in all patients. only % had documentation in the medical notes of the intention to prescribe. % were on an appropriate drug as per nice guidelines but % had exceeded the maximum recommended duration of weeks. of those prescribed said medications % were deemed at moderate to high risk of falls as per the morse fall scale and % had a documented history of falls. conclusion: there is room to improve prescribing practices with regard to hypnotics in older patients who already are at increased risk of adverse events and in particular falls while inpatient in acute hospitals. a sleep hygiene guideline with planned reaudit of our practice has been initiated as a result of this study. p co-prescription of laxative and opioids: a cross sectional study christine mc carthy, warren connolly, derek hayden mater misericordiae hospital, dublin, ireland background: laxatives are widely advised when taking opioid medication. opioid-induced constipation is a common problem and associated with serious comorbidity. our aim was to determine practices for the co-prescription of opioids and laxatives in patients [ in a large dublin teaching hospital. methods: we carried out a cross sectional audit on the medication prescriptions of all patients c years on wards in an acute teaching hospital ( specialist geriatric medicine wards (sgw) and surgical ward). we gathered information on patient, drug and prescriber characteristics. results: over a period of day patients were reviewed. the prev- alence of prescribing of opioid drugs, including tramadol and codeine based analgesics, was %. . % were female and the mean age was years (range from to ). . % of the patients receiving opioids were taking laxatives. of note, in the group that did not fit the inclusion criteria of being c , co-prescribing was lower, with a rate of %. conclusion: overall, when compared to a recent study undertaken in the netherlands, our rate of co-prescribing of opioids and laxatives is high ( . vs. %).this study shows that the widely used guideline to start laxatives when prescribing an opioid is currently being fol- lowed well in daily practice. however we need to improve awareness of same. on-going auditing of our practice has been initiated as a result of this study. p the concurrent validity of the -item bbs p with other clinical measures of balance in the community-dwelling elderly sinéad considine, helen french royal college of surgeons in ireland, dublin, ireland background: the aim of this study was to test the concurrent validity of the -item -level berg balance scale ( -item bbs p), against two measures of balance commonly used in the clinical setting: berg balance scale (bbs) and mini balance evaluation systems test (mini-bestest) in a sample of elderly community-dwelling adults. methods: a cross-sectional correlational study was conducted with a convenience sample comprising of community-dwelling elderly adults recruited from day care centres and physiotherapy departments. the following tests were administered: bbs, -item bbs p and mini-bestest. concurrent validity was determined using spearman’s rank order correlational coefficient. results: ten men and women were recruited [mean age (sd) . ( . )]. significant correlations were found between all balance mea- sures. the strongest correlation occurred between the -item bbs p and bbs (q = . , p \ . ). however, there was a difference of up to seven points on the bbs, for a score obtained on the -item bbs p. the bbs and mini-bestest demonstrated high correlation (q = . , p \ . ). moderate correlation occurred between the -item bbs p and the mini-bestest (q = . , p \ . ). the mini-bestest and bbs accounted for – % of the variance in the -item bbs p. conclusions: the -item bbs p demonstrated moderate to high correlation with two commonly used clinical measures of balance and can be recommended as a measure of balance impairment in the elderly community-dwelling population. the -item bbs p and bbs should not be used interchangeably due to the discrepancy in scores of up to seven points, which exceeds the minimum detectable change (mdc) for the elderly. p cost effectiveness of inpatient rehabilitation in brain injury patients marie therese cooney, aine carroll national rehabilitation hospital, dublin, ireland background: acquired brain injury (abi) is the third commonest cause of death and disability with over , people in ireland suffering some form of abi each year. consequentially abi results in a significant burden of disability for patients, families, health pro- fessionals and wider society. older individuals are particularly affected as the stroke is the aetiology in the majority of cases. rehabilitation interventions following abi improve health outcomes, reduce disability, and improve quality of life. we aimed to assess the cost effectiveness of inpatient rehabilitation in a national tertiary specialist rehabilitation centre in patients post abi. methods: abi patients admitted between st january and st december were included. the disability rating scale (drs) was recorded as a measure of disability for patients on admission and discharge, following a period of intensive inpatient rehabilita- tion. the cost saving attributed to the rehabilitation programme was calculated for each patient by comparing the average ongoing cost of care for their respective admission and discharge levels of dis- ability. the cost of inpatient rehabilitation for each patient was also calculated. subgroup analyses by admission disability category were performed. results: patients were admitted for rehabilitation. patients had complete drs information on admission and discharge. the average levels of functioning based on domain g of the drs were . (between mildly dependent and moderately dependent) on admission and . (independent in a special environment) on discharge, p \ . for difference. the average care costs on admission of the group were . euro weekly. these reduced to . euro weekly on discharge. based on these savings the costs of inpatient rehabilitation would be covered by the resultant savings within months. savings were highest in the most severely disabled group. conclusions: inpatient rehabilitation in an irish setting is associated with substantial cost savings. ir j med sci ( ) (suppl ):s –s s p do not attempt resuscitation (dnar) documentation: does it comply with recommendations of the national consent policy? marie therese cooney, patrick mitchell, iulia ioana, daniela stancila, shagool abdulla, crina burlacu, rachael doyle st. colmcille’s hospital, loughlinstown, dublin, ireland background: the national consent policy, introduced in , deals with do not attempt resuscitation (dnar) orders (part iv) and clarifies the information which should be documented. we aimed to assess the number of patients in this hospital with dnar orders in place, to assess the documentation of these and whether the documentation fulfilled the recommendations in the national consent policy. methods: all inpatients in this hospital on rd august were included. data were collected prospectively. for each patient we examined: medical notes and nursing notes for documentation of dnar. where a dnar instruction was present we searched for a dnar form and examined the review date on the form. results: patients were included in the first audit. % had dnar orders in place. all were clearly documented in the medical notes but only % had the dnar form completed. only % of those with the dnar form completed had a review date entered. in one the review date had expired. conclusions: we concluded that medical staff were competent in documenting the dnar instruction, however, there was a lack of awareness regarding the need to complete the dnar form, as rec- ommended in the national consent policy. the results of the audit and the recommendations in the national consent policy were presented at the educational conference and a re-audit was completed on th march . patients were included. % had dnar orders in place. all were clearly documented in the medical notes and all had the dnar form completed. however, only % had been completed fully with a current review date entered. subsequently, the form has been re-designed to highlight the review date and includes a summary of the policy recommendations on the reverse. further re-audit post introduction of the new form is planned. p troponin i is a predictor of delayed detection of atrial fibrillation in ischaemic stroke and tia frank ward, rory mcgovern, paul cotter st. luke’s hospital, kilkenny, ireland background: prolonged cardiac monitoring is associated with higher rates of atrial fibrillation (af) detection in ischaemic stroke/tia. however this can be costly and has significant practical implications. reports from investigation in selected groups suggest higher yields than those from unselected cohorts (e.g. unexplained stroke). the use of troponin–i (tni) as a biomarker for delayed af detection in stroke was investigated. methods: consecutive ischaemic stoke and tia cases were analysed by investigation of local data from the national stroke register, which contains prospectively entered details on all strokes and tias in the republic of ireland. cardiac and laboratory databases and case-notes were crosschecked for cardiac investigation and tni levels. the association between tni level on admission and occurrence of af was investigated. results: consecutive cases ( ischaemic stroke) were analysed. mean (sd) age was . ( . ) years; % female. cases ( . %) had af identified. of those ( . % of af) were the first documented presentation of af. such af diagnosis was either on admission ecg (n = ) or inpatient telemetry (delayed af, n = ). no af was identified by holter monitoring (performed in cases). tni level was significantly higher in those with delayed af than in those without af (w = ; p = . ). a higher proportion of those with an abnormal admission troponin ( %) than those with a normal troponin ( . %) had a delayed diagnosis of af (v = . , p = . ). troponin levels were also higher in known af and in those with new af on ecg. in a logistic regression model, not having a normal troponin level on admission was a significant independent predictor of delayed detection of af (or . , p = . ). conclusion: admission troponin estimation is associated with a higher likelihood of subsequent af. it could be investigated for the selection of cases for prolonged monitoring. p investigation of equal responsiveness of two frailty outcome measures within a day hospital setting and useability of both measures áine curneen, bronagh conroy, declan o’hanlon st. james’s hospital, dublin , ireland purpose: to determine the level of frailty of patients in the day hos- pital. to investigate if the edmonton frail scale and canadian study of health and aging (csha) clinical frailty scale are equally responsive. to investigate the useability of both outcome measures. the edmonton frail scale involves both subjective and objective elements with nine sections in total. the csha clinical frailty scale is a quicker subjective measure. relevance: frailty is a term widely used to denote a multi- dimensional syndrome of loss of reserves, that give rise to vulnerability. clinically, frailty stratification can help to plan interventions [ ]. par- ticipants: a convenience sample of twenty patients was used. methods: the two outcome measures were added to the initial assessment form, and each of the patients frailty levels were measured using both measures. the data was inputted into an excel spreadsheet. the physiotherapists involved were questioned in terms of ease of use of both outcome measures. analysis: the data was inputted into spss for quantitative data analysis. qualitative feedback from all physiotherapists involved was used to assess usability. results: the mean level of frailty of the twenty patients was ‘mildly frail’. a shapiro–wilk test revealed the data set was nonparametric. the spearman test revealed a significant (p = . ) and strong correlation (r = . ) between the edmonton frail scale and csha clinical frailty scale. all physiotherapists involved in the study reported the csha clinical frailty scale as the easiest and quickest to use. conclusion: there was a strong correlation between both frailty outcome measures. the csha clinical frailty scale is a quicker and shorter scale for physiotherapists to use. reference: . rockwood et al ( ) a global clinical measure of fitness and frailty in elderly people. can med assoc j : – p screening of osteoporosis treatment in patients presenting with fragility fractures in a geriatric active rehab unit eimear curran, simon clifford, siobhan forman, dermot power s ir j med sci ( ) (suppl ):s –s cappagh national orthopaedic hospital, fingal, ireland background: osteoporosis causes almost nine million fractures worldwide annually, and over , patients are admitted to uk hospitals with fragility fractures each year. fragility fractures are associated with a significant risk of mortality and morbidity. the aim of osteoporosis management is to reduce the risk of fracture by increasing bone mineral density and correcting deficiencies in cal- cium and vitamin d. primary prevention is indicated in women over the age of and men over the age of with one or more inde- pendent risk factor for osteoporosis. secondary prevention is recommended for all patients presenting with a fragility fractures. methods: patients admitted to a geriatric active rehab unit (aru) over a weeks period were assessed for their reason for admission, history of osteoporosis and osteoporosis treatment at admission. results: patients were admitted the aru over the study period. patients had been admitted with fragility fractures, of which were female. of these patients, had no previous recorded history of osteoporosis. ( %) patients were receiving osteoporosis treat- ment and/or calcium and vitamin d supplementation at admission. patients had a known history of osteoporosis, of which had pre- sented with a fragility fracture. ( %) of these were receiving osteoporosis treatment and/or calcium and vitamin d supplementation at admission. the medications prescribed for osteoporosis treatment were bisphosphonates (n = ), denesumab (n = ) and teripartide (n = ). patients with a fragility fracture or history of osteoporosis were supplemented with calcium and/or vitamin d alone. the dura- tion of treatment prior to admission was not recorded. conclusions: a high percentage of patients admitted to the aru present with a fragility fracture or a history of osteoporosis. all patients admitted to the aru should be screened for risk of osteo- porosis and appropriate osteoporosis treatment. p assessing the anticholinergic burden in a geriatric active rehabilitation unit eimear curran, dermot power cappagh national orthopaedic hospital, finglas, ireland background: falls are an increasingly common complication in patients over the age of . research has shown a relationship between the risk of falls and the use of anticholinergic medicines. as the number of elderly patients requiring management for multiple chronic conditions with numerous medications increases, the risk of the possible negative impact of medication on patients’ prognosis needs to be identified. methods: a snapshot audit of patients in a geriatric rehab facility was carried out. an anticholinergic burden (acb) screening tool produced by boustani et al. was used to identify all anticholinergic medicines that a patient is taking and a weighted scoring system based on its anticholinergic properties was applied. the outcome of the patient’s falls risk assessment, completed on admission to the active rehab unit, was also recorded. patients were classified as having a low, moderate or high risk of falls. results: patients were screened with an average age of years (range – years). patients were taking at least one anticholin- ergic medicine. of these, ( %) had an acb of – ( of whom were at a high risk of falls) and ( %) had an acb of c ( of whom were at a high risk of falls). in total, % of all patients were at a high risk of falls, % were at a moderate risk and % were at a low risk. the most commonly prescribed medicines with anticholin- ergic effects were furosemide, codeine and warfarin. conclusions: the acb in elderly patients recognised as having a high falls risk should be monitored. medicines should be reviewed for necessity, alternative treatment options should be assessed or if no alternatives are available, patient symptoms should be monitored. reference: . boustani ma et al ( ) impact on the aging brain a review and practical application. ageing health : – p the effect of the introduction of a tobacco-free hospital policy on documentation of smoking status and prescription of nicotine replacement therapy (nrt) breda cushen, kristina lukjanova, emer ahern st. luke’s general hospital, kilkenny, ireland background: while the prevalence of smoking worldwide has reduced, in the last years figures have plateaued with % of the population continuing to smoke. brief counselling combined with nicotine replacement therapy in hospital inpatients has been shown to result in sustained smoking abstinence at months. the nice guidelines, hse tobacco free policy and rcpi policy group on tobacco recommend the assessment of smoking status and targeted smoking cessation strategies for inpatients who are smokers. the aim of the audit was to assess whether the implementation of a tobacco- free campus at our institution resulted in increased identification of inpatient smokers and increased prescription of nrt. methods: two audits were carried out, the first months pre- implementation of the tobacco-free policy (audit ) and the second months post (audit ). data was collected from the medical notes and drug sheet of all hospital inpatients by two nchds using a data collection sheet. baseline demographics, medical co-morbidities (heart disease, copd/asthma), prescription of inhalers and pre- scription of nrt were recorded. documentation of smoking status was also noted. results: patient charts were analysed, of which were excluded due to incomplete records. the average age was ± . and ± years for audits and respectively. audit : smoking status was documented on ( %) of patients of whom % were smokers with % ex-smokers. patient was prescribed nrt. audit : following implementation of the hospital tobacco-free campus policy documentation of smoking status remained low at %. % were smokers with % ex-smokers. patients were prescribed nrt. conclusion: documentation of smoking status by admission nchds is poor. the implementation of hospital policy alone is not sufficient to increase nchd compliance with tackling smoking cessation. p an investigation of factors which predict acute short-term functional outcomes in older adults following hip replacement surgery aoife daly, sandra burke, emma costello, agnes shiel national university of ireland galway, galway, ireland background: ireland’s population is ageing. the increase in the number of older adults has led to an increase in the incidence of hip replacement surgeries. this, combined with the increase in demand for acute hospital beds, puts a strain on the healthcare system. there is ir j med sci ( ) (suppl ):s –s s pressure to ensure there is an efficient system for admitting and dis- charging patients from the acute hospital. the knowledge of factors which have the potential to predict acute short-term functional out- comes may assist with this discharge planning. the aims of the study was to answer the following; does the level of cognition or fear of falling predict acute short-term functional outcomes? does pre- functional status of an older adult predict acute short-term functional outcomes? does an older adults’ achieved acute short-term functional outcomes influence discharge destinations from the acute setting? is there a difference in acute short-term functional outcomes between trauma and elective hip-replacements? methods: a quantitative prospective study was used. participants had to be over the age of and had a primary hip replacement. eight participants were recruited. data were collected using the modified barthel index, standardised mini-mental state examina- tion and falls efficacy scale. these were administered on specific days (day , , and ) post hip replacement in the acute reha- bilitation setting. results: level of cognition was found as a significant predictor of acute short-term functional outcomes (p = . ). perceived self- efficacy, pre-functional statuses and functional outcomes between elective and trauma hip-replacement participants were not significant. conclusions: the data result suggest that participants with a lower level of cognition have poorer acute short-term functional outcomes post hip replacement surgery than those with higher levels of cog- nition. the sample size of eight participants limits the scope to draw a firm conclusion. future research with a larger sample from more than one geographical area is required. p post-stroke fatigue: an emerging condition, a review of the literature aisling davis st. vincent’s university hospital, dublin, ireland background: fatigue is a common and debilitating symptom post- stroke. it’s prevalence in the stroke population ranges from to %. psf negatively affects adl performance and thus, limits participation in rehabilitation programmes. it is a historically under researched area, with the vast majority of literature published in the past years. methods: computer-aided search of databases and thematic analysis was completed, adhering to strict inclusion criteria. of articles were selected (majority at level evidence), critically reviewed and grouped together to form key themes that were explored in more detail in the review. results: key findings: psf is very prevalent post-stroke and affects on average around half the post-stroke population. there is a dearth of literature in regards to the course and prognosis for psf. no definitive biological factors have been identified that cause psf. interventions/ treatments for psf are in their infancy. there is a clear need for a fatigue assessment tool that is standardised and appropriate for the post-stroke population as a whole. urgent need for further research in this area. conclusion: many patients may be classed as having poor rehabili- tation potential or poor motivation, when their presentation could be explained by the presence of psf. ahps should educate patients and families regarding fatigue management strategies for psf. psf needs to be a consideration when planning rehab and could guide optimum times for rehabilitation and duration of sessions. these findings will influence staffing levels in stroke units, rehab units and community care etc. psf has a detrimental effect on a person’s functioning and rehabilitation potential. i predict that research into psf is a rapidly developing area, which will be at the forefront of stroke research in the coming years. p risk factors for falls occurring during hospital stay juliana delos reyes, suzanne noel, rachael doyle, clodagh o’dwyer st. columcille’s hospital, loughlinstown, co dublin, ireland background: morbidity and mortality secondary to falls has been well established ( ). the nice guideline on falls incorporates assessment and prevention of falls during hospital stay ( ). need for further research into identifying risk factors for falls along with a focus on prevention of recurrent falls amongst inpatients are high- lighted. the aim of this audit was to assess documentation of risk factors for falls at time of their occurrence during hospital stay. method: retrospective chart review of medical inpatients years and above with documented falls between august and october in a bedded hospital was conducted. results: there were falls among patients. six had recurrent falls. mean age was . years ( female). seventy-nine percent were unwitnessed with % occurring near the bedside. seventy-five percent occurred during daytime and % scored two or more on the stratify risk tool for falls at the time of admission. the main risk factors identified were prior fall history, drugs especially diuretics and psychotropic medications, known cognitive impairment ( % mmse – , % mmse – , % mmse – ) and gait disturbance. forty-five percent had – risk factors at time of fall. there was no documentation surrounding footwear. only % had a postural blood pressure measurement and % had a visual acuity check. conclusions: this retrospective audit highlights the multi-factorial nature of risk factors surrounding inpatient falls. the stratify tool can highlight risk of fall at time of admission but a more thorough risk factor checklist is needed by the initial assessor at time of fall (nursing and medical) in order to prevent recurrence and associated injury during and after hospital stay. a plan to re-audit following instigation of such checklist is intended. references: . moudouni et al ( ) j appl gerontol : – . www.nice.org.uk p a study of warfarin control and potential suitability for switching to alternative oral anticoagulant agents in a geriatric day hospital setting lydia dennis , stuart lee , david williams department of geriatric and stroke medicine, beaumont hospital, dublin, ireland; royal college of surgeons, dublin, ireland background: atrial fibrillation (af) is a recognised cause of ischaemic stoke. anticoagulation with warfarin has been demon- strated as an effective secondary stroke preventative treatment. the international normalised ratio (inr) is a comparative rating of a s ir j med sci ( ) (suppl ):s –s http://www.nice.org.uk patient’s prothrombin time ratio and is routinely monitored during warfarin therapy. strict control of inr during warfarin therapy is required to ensure efficacy and safety. methods: a retrospective study of the warfarin medical records for patients attending a geriatric day hospital for inr monitoring was conducted from / / to / / inclusive. time in the thera- peutic range (ttr) was calculated as the percentage of therapeutic inr values divided by the total number of inr values for the calendar year for each patient. potential suitability for switching to a novel oral anticoagulant (noac) treatment was based on the patients’ estimated glomerular filtration rate (egfr). results: (m:f, : , mean age . years) patients attended the day hospital during the study period. / patients had a diagnosis of af and were included in the analysis of ttr. the mean ttr for all patients with af was % (± . ). patients aged between and years had a mean ttr of % (± ), those [ years had a mean ttr of % (± ). mean egfr was . ml/minutes/ . m (± . ). the majority of patients (n = ) had a creatinine clearance [ ml/minutes gfr and could be considered for switching to a noac therapy as an alternative to warfarin therapy. noacs were contraindicated in patients with an egfr \ ml/minutes. conclusions: the ttr results of this study were similar to that performed in ( vs. % respectively) comparing favourably with previous international studies. in patients with suboptimal inr control whose creatinine clearance does not contraindicate their use, noac agents may considered as an alternative to warfarin therapy. p reduced gait speed in community-dwelling adults with atrial fibrillation orna donoghue , sofie jansen , cara dooley , sophia de rooij , nathalie van der velde , rose anne kenny the irish longitudinal study on ageing (tilda), trinity college dublin, dublin, ireland; section of geriatric medicine, department of internal medicine, academic medical center, amsterdam, the netherlands background: atrial fibrillation (af) is the most common cardiac arrhythmia and is associated with increased stroke and mortality. while af has been associated with self-reported walking deficits, this study examined the independent associations with objectively mea- sured usual gait speed using data from a large, nationally representative study of community-dwelling adults. methods: participants in the irish longitudinal study on ageing (tilda), aged c years, with mini-mental state examination score c , and who completed a usual gait speed test using the gaitrite walkway were included in this analysis (n = , ). af was diag- nosed objectively according to esc guidelines using a minutes surface electrocardiogram recording. linear regression analyses were performed to compare gait speed in participants with and without af, adjusting for socio-demographics, physical, cognitive, mental and behavioural health and frailty. results: in this community-dwelling sample (mean age . years; range – ), the prevalence of af was . % (n = ) increasing to . % in participants aged c years. in comparison to the non-af group, those with af were more likely to be male, older, frailer, less educated, on more cardiovascular drugs and have poorer behavioural health patterns. in multivariable analysis, af was independently associated with slower usual gait speed (b = - . ; % ci - . , - . ; p \ . ) and there was also a significant age*af interaction effect (b = - . , % ci - . , - . , p = . ). after adjusting for all confounders, adults with af walked . cm/seconds more slowly than adults without af at age , declining by a further . cm/seconds for every additional decade. conclusion: af is independently associated with slower usual gait speed in community-dwelling adults, especially those aged years and older. reduced gait speed increases the risk of falls, disability, cognitive decline and mortality. therefore, the early recognition and treatment of af is vital to reduce the risk of these adverse outcomes. p do self-reported sensory deficits predict recurrent falls over two years? orna donoghue , annalisa setti , cara dooley , rose anne kenny the irish longitudinal study on ageing (tilda), trinity college dublin, dublin, ireland; school of applied psychology, university college cork, cork, ireland background: co-existing deficits in self-reported balance, vision and hearing, predict fear of falling and mobility decline in older women. this study examined if self-reported sensory deficits also predict future falls in community-dwelling adults with no previous fall history. methods: participants in the irish longitudinal study on ageing (tilda), aged c years, with mini-mental state examination score c , were included in this analysis (n = , ). at baseline, the participants’ self-reported vision was dichotomised (excellent/very good vs. good/fair/poor), as was hearing (excellent/very good vs. good/fair/poor), and steadiness during walking (very steady vs. slightly steady/slightly unsteady/very unsteady). groups were defined based on the presence of a single sensory deficit and any combination of deficits. participants reported the number of falls since the last interview; c falls indicated a recurrent faller. poisson regression analyses were used to obtain relative risk of being a new recurrent faller after adjusting for socio-demographics, physical and mental health. results: in this sample (mean age . years; range – ), participants ( . %) reported unsteadiness while ( . %) and ( . %) reported a vision or hearing deficit respectively; ( . %) had two deficits while ( . %) had three deficits. unsteadiness was associated with recurrent falls over two years (irr . , % ci . – . , p \ . ). the relative risk was slightly lower when unsteadiness co-existed with poor vision (irr . , % ci . – . , p = . ) and poor hearing (irr . , % ci . – . , p = . ) but increased in participants with all three deficits (irr . , % ci . – . , p = . ). conclusion: adults who self-reported unsteadiness during walking are about . times more likely to fall repeatedly in the next years compared to those with no sensory deficits. vision and hearing def- icits are not associated with falls, unless they co-exist with unsteadiness. this suggests that self-reported steadiness may be useful as part of a geriatric falls assessment especially when objective measurements are not available. p appropriate use of urinary catheters and documentation in the geriatric population kevin doody, elaine shanahan, carol gaffney, amin elshibly, george krakra, margaret o’connor ir j med sci ( ) (suppl ):s –s s university hospital limerick, limerick, ireland background: the purpose of study was to assess if indications for urinary catheterisation and documentation were appropriate as rec- ommended by hse/hpsc. methods: all medical wards at university hospital limerick were included in study over a one day period. for every patient who had a catheter in situ the medical notes were checked to see if: ( ) the indication for urinary catheter insertion was recorded, ( ) assess whether the procedure was documented results: in total patients were included in the audit. ( . %) patients were catheterised on the medical wards. this included ten males and five females. all patients were over the age of years. patient had catheter prior to admission. of the remaining patients, ( . %) patients had catheter inserted in accident and emergency, ( . %) patients had catheter inserted on ward, and ( . %) patients had catheter inserted in unknown location. ( . %) patients had appropriate clinical indication for catheter insertion which included acute urinary retention and monitoring urinary output. ( . %) patients had inappropriate indication of urosepsis recorded for reason of catheter insertion and ( . %) patient the reason was biliary sepsis without indicating was reason for monitoring urinary output. the remaining ( . %) had no reason for urinary catheter documented in notes. the procedure was documented in medical notes in only patients, and patient consent was documented in only one case. conclusion: it is evident that inadequate documentation in medical notes means it is hard to assess the appropriate indication for urinary catheterisation. in this study, . % of documented reasons for catheterisation were inappropriate. large deficiencies in recording the indication for catheter insertion, documentation of the procedure itself and recording of patient consent obtained are evident. p outcomes of patients following attendance at a geriatric day hospital: one-year prospective cohort study rory durcan , diarmuid o’shea , roman romero-ortuno , morgan crowe , orla collins , john j. barry , graham hughes st. vincent’s university hospital, dublin, ireland, st. michael’s hospital, dun laoghaire, co dublin, ireland background: one year ago we identified the prevalence of frailty in the new community dwelling older people referred to our geriatric day hospital in a large university hospital . in total we assessed patients and their level of frailty was measured using the frailty instrument for primary care of the survey of health, ageing and retirement in europe (share-fi). the aim of this study was to determine outcome with regard to mortality and acute hospitalisation rates/length of stay at year in this patient cohort. methods: one year prospective cohort study. levels of frailty (i.e. non-frail, pre-frail, frail) were measured with share-fi. data was collected in relation to patient mortality at , , and months by assessing the bereavement notification website: http://www.rip.ie. data was collected about acute hospitalisation of this patient cohort using this university’s hospital computer based patient administra- tion system. results: of the original patients, ( . %) were still alive and ( . %) were dead. of the deaths ( male, female); frail group— ( . %) deaths, pre-frail group— ( . %) deaths and non-frail group— ( . %) deaths. acute hospitalisation occurred in ( . %) patients from the cohort. this accounted for acute hospital admissions. in total there were , inpatient bed days, with median length of stay (los) days (iqr – ). median length of stay were as follows; non-frail group-median los days (iqr – ), pre-frail group—median los days (iqr – ), frail group— median los days (iqr – ). conclusion: there is a significant mortality rate at year of follow- up in this cohort likely related to multiple underlying co-morbidities. there is a trend towards longer inpatient length of stay with increasing frailty as assessed by the share-fi tool. p the prevalence of anaemia in a geriatric day hospital cohort rory durcan, aishling walsh, diarmuid o’shea st vincent’s university hospital, dublin, ireland background: anaemia is a common condition of the elderly and prevalence increases with age. anaemia in the elderly is often mild and well tolerated. however, it can have an important impact on the quality of life of older patients. the objective of this study was to identify the prevalence of anaemia among consecutive patients attending a day hospital. methods: this was a retrospective cohort study of consecutive new patient referrals to our outpatient day assessment unit in this university hospital. we analysed the haematological and biochemi- cal laboratory results to identify the prevalence and aetiology of anaemia. a haemoglobin concentration of\ g/dl was considered to constitute anaemia in an elderly population regardless of gender . patients with anaemia were further subclassified into microcytic, macrocytic and normocytic anaemia respectively. results: the elderly patients, were males ( %) and were females ( %). the mean age was years (sd . , range – ). the mean hb was . g/dl. there were patients with a hb \ g/dl (range . – . g/dl) and of those patients had a hb \ g/dl. the vast majority were normocytic normochromic anaemia ( . %) and microcytic anaemia ( . %), there was no mac- rocytic anaemia. aetiology of anaemia were as follows; iron deficiency anaemia n = ( . %), vitamin b deficiency n = ( . %) and anaemia related to chronic kidney disease n = ( . %). conclusion: anaemia is prevalent condition in the elderly and is often multifactorial. however, all cases of anaemia should mandate thorough investigation and treatment where appropriate in a frail population. reference: . andres e, serraj k, federici l, vogel t, kaltenbach g ( ) anemia in elderly patients: new insight into an old disorder. geriatr gerontol int ( ): – p a study of body mass index change in hospitalised geriatric patients in an active rehabilitation unit ana espinosa gonzalez, dermot power, siobhan forman, joanna larkin s ir j med sci ( ) (suppl ):s –s http://www.rip.ie university college dublin, dublin, ireland background: the body mass index (bmi) is an easy to calculate measure of healthy weight, useful in assessing long term morbidity and mortality from chronic disease. this study examines the bmi change in electively admitted geriatric patients during their stay in a rehabilitation ward and its correlation with length of stay (los). methods: this is a retrospective descriptive study, using a database compiled from the rehabilitation ward notes and hospital electronic registers, covering a period of months. our sample consisted of patients, with samples discarded due to incomplete data. we cal- culated the distribution of patients into who bmi categories, both at the time of their admission and discharge. we also analysed relations between los, bmi change and age by calculating pearson correlations. results: out of a population of patients, during an average los of days, % lost weight while % gained, with an average change of kg. at the time of admission, . , . and . % fell into underweight, normal and overweight/obese bmi categories respec- tively, changing to . , . and . % at discharge. there was a weak positive correlation (p = . ) between los and the change in bmi, showing patients tended to gain weight with an increasing los. a moderate negative correlation (p = - . ) between age and admission weight was observed. the average age was . conclusions: we suggest that the tendency for an increased bmi between admission and discharge is due to physiotherapy and nutri- tional supplementation. the negative correlation between age and admission weight is consistent with existing studies for elderly patients. we also note that bmi as an indicator can have limitations when applied to this age range and there are studies that suggest altering who cut-offs for elderly patients. p impact of season, weekends and bank holidays on transfer of nursing home residents to emergency department chie wei fan, tracy keating, dermot power, eamonn brazil, joseph duggan mater misericordiae university hospital, dublin, ireland background: nursing home (nh) residents receive their medical care predominantly through their designated general practitioner. for urgent, unexpected clinical events, the residents are transferred to the acute hospital emergency department (ed). a previous study showed that only a third of nh residents present during normal working hours (briggs ). our aims were to profile -year nh transfers to the ed and to examine the recidivism, patient outcome and the impact of season, weekends and bank holidays on transfer rates. methods: all nh transfers to the ed from the dublin north city catchment in were identified using the electronic patient infor- mation system. information collected included age, gender, ed patient outcome (admission/discharge/died in department), time of presentation, date, day of attendance and whether it was a bank holiday. recidivism and the time interval between transfers, transfer rates for season, weekdays/weekends and bank holidays were calcu- lated. student t test, chi-square statistics and one-way anova were used. significance was set at . . results: in , nh residents had episodes of care of which there were ( . %) admissions, ( . %) discharges and deaths in the ed. one hundred and thirty-seven ( . %) residents were recidivists to the ed and ( . %) episodes occurred within a fortnight of the last attendance. neither season nor weekdays/week- ends nor bank holiday affected the transfers or admission rates of the nh residents. the highest transfers occurred in may ( . patients/ day), during working hours ( . transfers/hours) and on mondays, wednesdays and thursdays ( . transfers/day). conclusions: the data therefore do not support the assertion that nh patients are mainly transferred at weekends, during bank holidays or in the winter months. further insights into the attendance pattern of nh residents to ed, may facilitate appropriate staffing in ed departments to manage these frail complex patients. p impact of a cns for frail older adults on a geriatric consult service in a tertiary academic teaching hospital deborah fitzhenry, robert briggs, desmond o’neill, ronan collins, tara coughlan tallaght hospital, dublin , ireland background: comprehensive geriatric assessment of patients of other services has always been part of the core work of the specialist geriatric team. older adult admissions are increasing with demand on the services to discharge patients. increasingly geriatric consults are being requested often by junior doctors. our newly appointed cns for frail older adults prioritises triages and pre-assesses all patients for whom geriatric review may confer the most benefit. method: retrospective data was collected from the key system from the st of january to th of may . results: consultations received with consultations com- pleted. pre-screening by the cns resulted in appropriate triaging of those with greatest need based on patient review, accurate collateral history and in-depth chart review. ( %) of consults were received from general medical teams. orthopaedic services requested ( %). suitability for long term care (ltc) or rehabilitation following surgery or acute illness and deconditioning and medical advice on the management of dementia and delirium are the more common referrals. as a result of consultation ( %) of patients were listed for ltc the majority of these for dementia. ( %) patients were referred for further rehabilitation. up to % of referrals were classed as inappropriate by the cns at initial review the most common reason being lack of or erroneous information or medical instability/incomplete investigation of the patient. conclusion: this study demonstrates the significant activity attrib- utable to consultations to the geriatric services and highlights the role of the cns. this role has significantly improved timely access to comprehensive geriatric assessments resulting in a reduced work- load. the significant numbers of patients seen with delirium and dementia also emphasises the importance of nurse specialist involvement and their role in education of nursing and allied health professionals colleagues in management methods of these conditions. p significant fall reduction: the effectiveness of an interdisciplinary falls group in a residential centre for people ageing with intellectual disabilities bernadette flood, john f flood, grainne bourke, marie o sullivan, geraldine delaney, cardwell muvangani, jillian connolly, margot brennan ir j med sci ( ) (suppl ):s –s s daughters of charity disability support services, dublin, ireland background: the increased longevity of people with intellectual disabilities is a relatively new phenomenon. they have a multiplicity of predisposing factors for falls and injury post fall. the prevention of falls is an important issue in maintaining the health, quality of life and independence of people ageing with intellectual disabilities. a ret- rospective case control study in identified risk factors for falls in this centre. aim and objectives: effective fall prevention programmes aim to reduce the number of people who fall, the rate of falls and the severity of injury should a fall occur. the aim of this project was to investigate the effectiveness of an interdisciplinary falls group which included input from activation, nursing, nutrition, occupational therapy, phar- macy and physiotherapy. methods: falls in the centre were reported on a fall and injury information form. data for years was inputted into excell, extracted to spss version and analysed. analysis: analysis included both descriptive and inferential statistics. inductive analysis was performed to examine potential associations between diagnoses and other circumstances of the fall, and the out- comes variables of injury from fall and number of falls. results: fall prevention strategies should be targeted at the peak time for falls- at – am and – pm. people with a diagnosis of epi- lepsy differed significantly from those without, in relation to the distribution of number of falls (mann–whitney u , p = . ). statistical analysis of the annual number of falls in this centre showed a significant decrease of % in the yearly mean falls per resident between and . conclusion: the interdisciplinary falls group in this centre proved to be an effective intervention to prevent falls in this vulnerable popu- lation and a similar falls group in other locations of care may have equal success. p the pivotal role of the assessment and treatment centre/day hospital in optimizing health, function and wellness in older adults mary j foley, mary hickey, suzanne timmons, norma harnedy, maria crowley, martina agar st. finbarr’s centre of gerontology & rehabilitation, cork, ireland in , st. finbarr’s assessment and treatment centre (a&tc) was awarded outpatient initiative of the year. an analysis of activity from to demonstrated a % increase in new referrals which coincided with the move from smaller day hospital facilities to specially adapted facilities with additional resources. the a&tc provides older adults with timely access to rehabili- tation and a range of diagnostic and therapeutic interventions. in addition to nursing, therapy, medical review and comprehensive geriatric assessment, specialist clinics include memory, movement disorder, falls, anti-coagulation, infusion and continence advisory. in accordance with the national positive ageing strategy (dept of health and children, ), the dedicated team of health care pro- fessionals enable and support older people to enjoy physical and mental health and wellbeing to their full potential. complex case management, rehabilitation and community liaison support sustain frail older adults in their own homes, reducing burden of care. it acts a resource for healthcare professionals providing a pivotal link between hospital and community based services. the interdisciplinary team are focused on evidence based practice and key performance indicators and the delivery of measureable outcomes for frail older people as outlined in specialist geriatric services model of care (rcpi/hse ). operational aspects of clinics have also improved i.e. timed appointments with improved waiting times and triage facilitating comprehensive assessment and focused intervention. patient questionnaires have revealed high sat- isfaction rates with the service which is tailored to meet their needs and is person centred. while the service continues to evolve, it is evident that ambulatory care and the role of the day hospital/assessment and treatment centre are a cost effective means of providing care for older adults reducing hospital admissions. p evaluation of stroke recovery post discharge from a stroke rehabilitation unit mary j. foley, paul gallagher, anita ryan, aishling doyle, maureen johnson, irene hartigan, carmel kilcommons, shiela robinson, elizabeth armstrong st. finbarr’s hospital, cork, ireland background: stroke disability and morbidity are associated with reduced quality of life (qol) among stroke survivors (huang et al. ). evaluating stroke recovery is complex as stroke not only impacts on physical function, but also on emotion, memory and thinking, communication, and quality of life. the stroke impact scale is a validated tool that addresses meaningful domains in the recovery process. purpose: to evaluate stroke recovery through measurement of quality of life indicators. methods: a quantitative descriptive approach was used using the stroke impact scale (sis version . ) as a data collection tool. sample: all patients discharged from the stroke rehabilitation unit who attended for a follow-up appointment with the anp. the concurrent data collection process involved face to face interview with patients as part of the scheduled follow-up appointment with an advanced nurse practitioner (anp) in the assessment and treat- ment centre, – weeks post discharge from the stroke rehabilitation unit. sample size: n = (male %, female %). age profile – data analysis: sis scoring software on microsoft access. results: % of patients rating their own recovery between and %. there was a strong relationship between perceptions of recovery and physical functioning as rated using the modified rankin scale with % scoring – indicating moderate to severe disability. mean scores across domains were physical strength %, mobility %, activities of daily living %, purposeful engagement %, mood and emotion %, communication %. twenty percent rated their hand function on the affected side as less than %. conclusion: the stroke impact scale engages the stroke survivor in rating their own recovery. coordinated specialist intervention on a stroke rehabilitation unit and organised follow-up post discharge improves patient outcomes, aids recovery and prompts person centred focused intervention. s ir j med sci ( ) (suppl ):s –s p an investigation of vitamin d status and supplementation in a predominantly elderly east galway population eilis foran, teresa donnelly university of limerick, limerick, ireland background: vitamin d deficiency is common, particularly in northern latitudes. it is associated with bone mineralization defects, increased fracture risk and increased rates of falling. this study examined a predominantly elderly east galway population, measured vitamin d levels and rates of supplementation in this population, and compared them with international clinical guidelines. methods: the following data were obtained from the medical records of patients for whom serum (oh)d (vitamin d) levels were available: serum (oh)d levels (nmol/l); time of year of sampling; whether or not supplementation was commenced on receipt of the results of vitamin d levels and whether or not patients were vitamin d supplemented at the time of testing. these data were compared with clinical guidelines for the evaluation, treatment and prevention of vitamin d deficiency. results: there was substantial seasonal variation in vitamin d mea- surements, with average serum levels of (oh)d of . nmol/l in winter and . nmol/l in summer. ninety-one patients ( . %) were vitamin d deficient. twenty percent were severely deficient, . % were moderately deficient and . % were mildly deficient. forty-nine percent of deficient patients were started on a vitamin d supplement. of these, % were prescribed supplements containing iu of vitamin d daily. when we characterised patients with severe vitamin d defi- ciency, we found higher rates of falling and parkinson’s disease in this patient group. severely deficient patients were more likely to be nursing home residents than vitamin d-replete patients. conclusions: there is a high prevalence of vitamin d deficiency among the elderly in east galway. only % per cent of vitamin d deficient adults received a supplement. supplementation was inade- quate, with most patients started on iu vitamin d daily, compared with the international guidelines of , iu vitamin d or d once a week for weeks, followed by maintenance therapy of – , iu/day. p the first months of a newly established active rehabilitation unit for the frail and elderly: a retrospective review siobhan forman, colm geraghty, joanne larkin, catherine mulvihill, mary nolan, dermot power cappagh national orthopaedic hospital, dublin, ireland background: in october the active rehabilitation unit opened in a dublin hospital in response to the increasing need for medicine for the elderly rehabilitation beds. the patients have been managed by a multidisciplinary team including medical, nursing, physiotherapy, occupational therapy, medical social work, pharmacy, dietician, podiatry and speech and language therapy. this presentation looks at demographics of the patients during that month journey; and their ultimate discharge destination. a months sample was reviewed and different discipline outcome measures are presented. methods: a retrospective review of all admissions since the opening of the aru (from october to may ) was undertaken and gender, age, and length of stay were calculated. a review of a months sample was assessed and admissions reviewed as to barthel score; bmi; mmse score; fim score and charlson comorbidity index score. results: in months since opening there were admissions to the unit. %were female; %male. the average age of the patient cohort is years (range – ). the average length of stay is days. the majority ( %) of patients were discharged to their home. % were discharged to ltc. on review of a months sample the barthel scores improved by %. the mmse average was . the bmi increased with length of stay. the fim improved from admission. the charlson comorbidity index score average was . . conclusion: the cohort of patients attending our active rehabilita- tion unit is a frail population group who require significant multidisciplinary team input. it is difficult to comment on the out- comes in the absence of data from other similar facilities. we would suggest a national geriatric rehabilitation outcomes database to facilitate valid comparison. p an assessment of the age adjusted charlson’s comorbidity index on deaths in an active rehabilitation unit francisca ugwu, siobhan forman, dermot power cappagh hospital, dublin, ireland background: elderly patients suffer from multiple chronic conditions which may affect their quality of life, use of health services, mor- bidity, and mortality. the charlson’s comorbidity index (cci) score was used as a predictor of mortality in an active rehabilitation unit. it is a weighted index that takes into account the number and severity of comorbid conditions; and predicts year mortality. this study reviews the cci of deceased patients of our active rehabilitation unit in cappagh hospital and compares it to an average sample of our cohort patients. methods: a retrospective review of all deaths within our active rehabilitation unit was collected; and the details of their comorbidities were collated. the cci for each patient was calculated. this was then compared to the cci of all patients taken on day in the unit on random sample in may . results: a total number of admissions presented to the active rehabilitation unit in cappagh hospital from october to april . during this period there were deaths representing % of the total. the cci was calculated for these and ranged – with an average of . . the average cci taken as a random sample on patients on th of may was . , with a range of – . conclusion: patients presenting to the active rehabilitation unit are from two acute hospitals, the mater misericordiae and connolly hospital. they are frail with multiple comorbidities. a small per- centage ( %) died subsequent to admission to our rehabilitation unit. the cci of these patients were significantly higher than those of an average sample of patients. the cci might prove a useful tool in evaluation of patients for assessing increased medical and nursing requirements and perhaps their suitability for admission. p an assessment of the charlson comorbidity index on a patient population on an active rehabilitation ward siobhan forman, dermot power ir j med sci ( ) (suppl ):s –s s cappagh hospital, finglas, ireland background: the charlson comorbidity index (cci) is a method of predicting mortality by classifying or weighting comorbid conditions and has been widely used by health researchers to measure burden of disease and case mix. the patients presenting to the active reha- bilitation unit in a dublin hospital are transferred following admission to two other dublin hospitals. the majority had an acute admission to these hospitals following orthopaedic surgery for a fracture. they have multiple comorbidities. this study assessed the scores of all patients on the unit. methods: all patients present on the active rehabilitation ward on the th of may had their age, medical illness, chronic kidney disease stage, and mmse recorded. they were scored using the charlson comorbidity index score calculator, and their scores were age adjusted. results: the cci range was – for our population cohort, with an average of . . moderate to severe renal disease, copd and dementia were the three most commonly scored conditions. conclusion: as a population cohort those who present to step down facilities from acute hospitals, such as the active rehabilitation unit in this hospital exhibit a high charlson comorbidity index, reflecting their moribund status. this has significant health management issues for the attending multidisciplinary team. there are significant finan- cial issues to dealing with patients with comorbidities. more recent studies by quan et al. have shown that the weighting of the cci could be updated to put more weighting to dementia and ccf. there is scope for the development of a morbidity index calculator specific to a geriatric patient population. p views and experiences of irish healthcare workers on the delivery of palliative care to people with parkinson’s disease: a qualitative analysis siobhan fox , alison cashell , w. george kernohan , marie lynch , ciara mcglade , tony o’brien , sean o’sullivan , suzanne timmons center for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland; parkinson’s association of ireland, dublin, ireland; irish hospice foundation, dublin, ireland; institute of nursing and health research, university of ulster, co., antrim, uk; marymount university hospital and hospice, co., cork, ireland; cork university hospital, cork, ireland background: people with advanced parkinson’s disease (pd) have complex symptom management needs, often non-neurological, especially towards the end-stage of their illness. therefore the potential role of a palliative care approach for patients with end-stage pd is gaining increasing interest. however, international research shows that palliative care needs often are not addressed in pd; and our previous survey of healthcare workers (hcws) suggested an unmet need in the irish context. the aim of the current study was to explore the views of hcws on the delivery of palliative care to people with pd, including perceived barriers and facilitators, through an in-depth qualitative analysis. methods: semi-structured interviews were conducted with hcws (n = ) from the hse south region. hcws specialising in pd, neurology, or palliative care were purposively sampled. interview transcripts were analysed using thematic analysis. results: participants felt that a palliative care approach would benefit people with advanced pd. however, findings indicated poor service delivery and unmet palliative needs in this population. hcws iden- tified many perceived barriers to the introduction of palliative care in pd, including negative stigma associated with palliative care, unclear referral pathways to specialist services, and a lack of resources to extend specialist services beyond cancer patients. methods to facili- tate palliative care delivery in pd were also discussed, including the importance of a multidisciplinary team approach, effective commu- nication between members, better hcw education and guidelines to facilitate ‘‘generalist’’-provided palliative care, more information for patients/families, and increased public awareness of palliative care. conclusions: a palliative care approach can benefit people with pd. however perceived barriers prevent easy referral to specialist services or adoption of a palliative care approach. at an organisational level, we recommend the introduction of clear local pathways for referral to specialist palliative care, as well as national guidelines for the palli- ative care of people with pd. p are newly established nursing homes more likely to transfer their acutely ill residents to our hospitals? mary ann furigay, jonathon o’keeffe, graham hughes, diarmuid o’shea st. vincent’s university hospital, dublin, ireland background: nursing homes (nhs) provide care to older people that are particularly predisposed to acute illness episodes. older residents often have multiple co-morbidities that impair their physiological response to acute illness episodes. by necessity, nh capacities will increase as our population ages and care models must adapt to improve the care older people can expect to receive in nhs. we questioned whether new nhs were more likely than their established counterparts to transfer acutely ill older residents to an acute hospital for management. methods: prospective data collected as part of routine care of older nh residents admitted acutely to a large university hospital were reviewed for the month period (september –april ) from newly established private nhs (resident population and respectively) and compared with a similar sized established private nh. results: patients were identified (mean age years; % female). of the new nhs: nh a had unscheduled admissions while nh b had ; their more established counterpart, nh c had unscheduled admissions. the published literature suggests a range of rates for acute transfer of – per beds per year. transfer rates in our instance were . , . and . per beds for the month period for nhs a, b and c respectively. conclusion: our data suggests that new nhs are more likely than their established counterparts to transfer their older nh residents when acutely ill. this effect will likely be exaggerated over the coming years as the nh sector grows. we would advocate that joint primary and specialty geriatric care approaches are explored to facilitate education and training of nh nursing and medical staff and to support the delivery of care to older people resident in new nhs at this vulnerable time. p simulation-based multi-disciplinary team training: does it enhance care quality for older people? nao kodate , katherine gavin , alastair ross , sarah donnelly , elaine wilson , diarmuid o’shea , graham hughes s ir j med sci ( ) (suppl ):s –s university college, dublin, dublin, ireland; st. vincent’s university hospital, dublin, ireland; university of glasgow, glasgow, uk background: this paper describes the process of designing and evalu- ating a ward-based simulation training programme for multidisciplinary healthcare staff in an older persons’ unit, aimed at improving teamwork, coordination of care and the patient experience. recent studies suggest that simulation training for geriatric medicine is useful and potentially very effective. ( ) training in multi-disciplinary teams is shown to enhance non-technical skills such as team communication and coordi- nation of care. ( ) however, there is a need for more evidence in relation to transference of these learning outcomes to the ward environment, and effects on clinical behaviours, patient care and staff experiences. methods: healthcare professionals, patients and carers on an acute specialty geriatric medicine unit will take part in interviews and surveys to inform structure, content and process of ward-based mixed-modality simulation sessions (scenarios and exercises) with integrated debriefing. a mixed-methods evaluation will include confidence rating scales and follow-up interviews and questionnaires with staff at – weeks post-training. pre and post training analysis of secondary data on patient complaints, adverse incidents and satis- faction surveys will be performed. results: pre-training analysis identified areas for development which were incorporated in the training programme. we anticipate that post- intervention data may show improvement in the areas-communication within the team, leadership, self-confidence, co-ordination of patient care, clarity around the process of care/patient journey. thematic analysis of interview data will be performed. secondary data may support these findings by showing decreased patient complaints, adverse incidents and increased patient satisfaction. conclusion: our study aim is to demonstrate that simulation is an effective method for inter-disciplinary staff training and enhances patient-centred care. consultation with staff has already commenced. the study will continue during june and july with result publication in september . p bon appetite: improving the mealtime experience of residents in long-term mental health units through education and training colette gill , mary kehoe , fionnuala duffy , caoibhe mcguinnes , graham hughes st. vincent’s university hospital, dublin, ireland; hse, dml, dun laoghaire, co., dublin, ireland background: every resident has the right to receive tasty, nutritious and well-presented meals in pleasant surroundings at times conve- nient to them (health information and quality authority ). dysphagia prevalence in long-term mental health settings is estimated at %. it can negatively impact quality of life (qol), hydration and nutritional status. this study aims to examine compliance with modified food and fluids and mealtime factors (presentation, timing of meals and hydration) for residents in long-term mental health units. methods: a mealtime audit was completed in november . data was analysed using sphinx software. training was provided to staff by the speech and language therapist (slt) and dietitian. a pre and post-training questionnaire was completed by staff. a repeat audit was completed in may . results: residents were included in each audit. results revealed: ( ) compliance with slt recommendations: % pre-training, % post training. ( ) presence of a drink at mealtime: % pre-training, % post training. ( ) pre-training, % of res- idents received their meal (potatoes, meat and vegetables) mixed together in a bowl. post-training % of meals were presented on a plate with the individual components visible. ( ) pre-training, all residents ( %) had their meal before . including % before noon. post-training, all residents ( %) received their meal after . . ( ) % of residents consumed over % of their meal pre- training, increasing to % post training. pre-training questionnaire revealed % knowledge among staff, increasing to % post training. conclusion: residents’ mealtime experience, compliance with slt recommendations, residents’ nutrition and hydration status and staff knowledge has improved. presentation of meals is enhanced and timing of meals is more reflective of the home environment. overall, education was vital in improving a basic daily activity for residents in mental health units and their qol. training should be provided on a regular basis. p bmi as a predictor of mortality risk in older persons: the dublin outcome study hannah gogarty, adriana hadbavna, eamon dolan connolly hospital, blanchardstown, dublin, ireland background: weight gain and obesity are linked with increased risk of hypertension, total cardiovascular risk and all-cause mortality. studies have shown that this association is stronger in younger and middle aged than in older populations. we aim to evaluate the link between body mass index (bmi) and prediction of mortality risk in older hypertensive adults with a view to assessing whether different bmi cutoffs should be utilized in older persons with regard to weight management in the treatment of hypertension. methods: at baseline, not on antihypertensive medication, , patients ( , male), mean age . years underwent ambulatory blood pressure monitoring. using a computerised death registry, mortality outcome was ascertained. after a mean follow up of . years there were cardiovascular and non-cardiovascular deaths results: in a cox proportional hazard model an obese older person is % less likely to have a non-cardiac death than a younger patient. increased bmi [ resulted in hazard ratios (hr) of . ( . – . ) and . ( . – . ) for non-cardiovascular death and cardiovascular death respectively in the over group. in the under group a bmi [ resulted in a hr of . ( . – . ) and . ( . – . ) for non-cardiovascular and cardiovascular deaths respectively. after adjustment for sex, age, smoking history, previous cardiovascular events, diabetes and daytime systolic blood pressure, increased bmi in the under group results in hr of . ( . – . ) and . ( . – . ) for non-cardiovascular death and cardiovascular death. in the over group it resulted in hr of . ( . – . ) and . ( . – . ) for non-cardiovascular and cardiovascular death. conclusion: this study shows a trend linking higher bmi with reduc- tion in mortality risk in older individuals with hypertension, suggesting that arbitrary markers for obesity are not appropriate in the older patient. increased weight in older persons may be a sign of wellness. p the importance of follow up ambulatory blood pressure in older adults adriana hadbavna , hannah gogarty , alice stanton , eamon dolan , eoin o’brien ir j med sci ( ) (suppl ):s –s s stroke and hypertension unit, connolly hospital, dublin, ireland; clinical pharmacology, royal college of surgeons in ireland, dublin, ireland; molecular pharmacology, conway institute, university college dublin, dublin, ireland background: ambulatory blood pressure (abp) is endorsed by most guidelines for the management of hypertensive patients. much liter- ature is now available supporting its use to exclude white coat hypertension, illustrate abnormal circadian profiles and offer superior prognostication to clinic blood pressure. many of these studies use baseline abp for these analyses. the need for follow-up abp is however less clear. we undertook this study to evaluate follow-up abp in a population cohort. methods: as part of a population study individuals had baseline and follow-up abp. data was extrapolated for individuals aged over . the follow-up period was . ( . ) years. along with a repeat abp, routine biochemistry, ecg and echo were performed. ethics approval was attained. results: the mean age of the cohort at baseline was . ( . ) years while % were female. at follow-up mean total cholesterol level was . ( . ) with triglycerides . ( . ), mean body mass index (bmi) was . and mean creatinine level was . ( . ), at fol- low-up there was a . , . , and . mmhg increase in office, daytime and nighttime systolic blood pressures (sbp) respectively. interventricular septal thickness and left ventricular mass were more closely correlated with follow-up daytime sbp than baseline ( . vs. . ; . vs. . respectively). conclusions: in older healthy patient population, there is signifi- cantly higher increase in nocturnal than in daytime sbp at follow-up abp. while the broader use of abp has gained acceptance further studies are needed to clarify its role in the ongoing management of patients. our study suggests that follow-up abpm does provide useful information to facilitate better management of hypertension in ageing population. p a review of anticoagulation in geriatric day hospital setting adriana hadbavna, hannah gogarty, funmi ikotun, christopher osuafor, siobhan kennelly, eamon dolan connolly hospital, dublin, ireland background: despite the advent of newer anticoagulant agents many patients with atrial fibrilation or thromboembolic disease continue on warfarin treatment. while this can be due to patient choice there is a reluctance to change people from warfarin, who are felt to be stable on it. warfarin prescribing can be challenging and often left in the hands of junior doctors. a recent us study demonstrated widespread suboptimal anticoagulation control with warfarin. time in the ther- apeutic range (ttr) is a measure of control related to outcomes, such as major haemorrhages, ischaemic events and mortality. we under- took this study to evaluate anticoagulation efficacy in a population attending a day hospital-based warfarin clinic. methods: we carried out a retrospective review of all patients attending the anticoagulation clinic in the day hospital where one team carries out all prescribing. patients of all ages with atrial fibrillation and venous thromboembolism requiring a target inr – were included. all inr levels within a -month period were downloaded and analysed. ttr was calculated using the rosendaal method. results: there were a total of patients, mean age . ( . ). were \ and were [ years of age. the mean follow up time was . ( . ) days; the mean time in range was . ( . ) days. the average ttr was . ( . ). the mean number of inrs checked was . ( . ) during the follow up period. comparing the ttr in different age groups, a trend towards greater control in the older age group was observed ( . vs. . (p \ . ). older adults had slightly lower numbers of inr checks ( . vs. . ). conclusions: our study confirms that ttr is a useful measure to assure patients’ adequate anticoagulation control. the ability to highlight those with low ttr could allow these patients to be con- sidered for alternative treatment approaches. p acute stroke care audit in connolly hospital ( ) adriana hadbavna, lelane van der poel, hannah gogarty, funmi ikotun, siobhan kennelly, eamon dolan connolly hospital, dublin, ireland background: there is overwhelming evidence that coordinated, structured care in the early hours after stroke improves patients’ survival and overall outcomes. inasc ( ) confirmed that stroke services in ireland were poorly organised; in order to address these issues, the irish heart foundation’s council for stroke published national guidelines in october . the aim of our audit was to evaluate whether patients presenting with acute stroke are treated according to the guidelines. methods: a retrospective chart review was performed on ran- domly selected patients admitted to connolly hospital between and with a stroke diagnosis using the hipe coding system (codes i –i ). results: there were males, average age years (range – ). patients were admitted to a general ward, to a high care unit (icu/ ccu) and only patients admitted to the stroke unit. only % ( / ) of patients were classified as fast positive on arrival. average length of stay in the emergency department (ed) was hours. patients had ct scan performed within hours of presentation. access to the multidisciplinary team (mdt) was limited. only patients had phys- iotherapy assessment, had occupational therapy assessment and had full swallow assessment within the first hours. two patients were assessed by medical social work within – days. conclusions: patients with potential stroke are not recognised in a timely fashion and remain in ed for a prolonged period of time. current -bed stroke unit is underutilised and referrals to the mdt are inconsistent and delayed. mdt staff shortages due to restrictions imposed on recruitment contributed to this delay. further training across the disciplines is necessary and there is a strong need for a dedicated clinical nurse specialist in stroke, who would help to coordinate stroke care in this hse hospital. p cerebral amyloid angiopathy presenting as fast: positive acute stroke adriana hadbavna, lelane van der poel, eamon dolan connolly hospital, dublin, ireland background: cerebral amyloid angiopathy (caa) occurs more commonly than generally appreciated and is a condition associated with cortical haemorrhagic strokes, cognitive impairment and lacunar s ir j med sci ( ) (suppl ):s –s infarcts. the diagnosis is often overlooked and complicates the diagnosis of stroke. case report: a previously healthy -year-old woman presented to the emergency department with confusion, ataxia and speech dis- turbance. her symptom onset was minutes prior to presentation while attending a pilates class. she was triaged as fast positive on arrival and assessed for possible thrombolysis. on initial examination she had nominal aphasia and bilateral past pointing with a nihss of . it was decided to proceed directly to urgent mri due to her unusual constellation of symptoms and signs. the dwi sequences showed no evidence of an acute ischaemic infarct but t -gradient echo sequences showed multiple micro-haemorrhages, predominantly in the cortical regions bilaterally, strongly suggestive of a cerebral amyloid angiopathy. there was no suggestion of vasculitis. the largest of the micro-bleeds was in the left parietal lobe, which cor- responds with her symptoms. subsequently, ct brain with mm cuts confirmed an acute micro-bleed in this area. she was treated con- servatively with an emphasis on blood pressure control. on further assessment, new cognitive impairment was diagnosed with a mon- treal cognitive assessment score of / and collateral history. she was discharged following rehabilitation with no focal neurological deficits. she continues to follow up at the stroke clinic and repeat ct brain at months showed partial resolution of some of the micro- haemorrhages. discussion: caa should be considered when assessing patients for thrombolysis, especially in older patients. ct imaging with mm cuts would aid identification of micro-haemorrhages previously not visualised on conventional mm cuts. growing awareness of this condition and the wider availability of mr imaging are contributing to its more frequent diagnosis. p nurse-led warfarin clinic proving to be effective in maintaining patients within therapeutic inr range mary hickey , michael o’connor , irene hartigan , paul gallagher , natasha lewis st. finbarr’s hospital, health service executive, cork, ireland; school of nursing and midwifery, university college cork, cork, ireland background: a nurse-led anticoagulation service is provided to older patients attending the assessment and treatment centre in a cork hospital. we aimed to investigate the proportions of warfarinised older patients who were within target international normalized ratio (inr) during their most recent five inr measurements and to determine rea- sons why they may have been outside of their target inr. methods: a retrospective audit of patients’ records was con- ducted. five consecutive inr readings were recorded for each patient and the indication for warfarin documented. in total, inr read- ings were audited. results: the mean age of the sample was . years (sd . ); the majority were male (n = ). atrial fibrillation (n = ) was the main indication for the prescription of warfarin. the results highlight that % (n = ) of patients were in the target inr range. when the parameters were increased to a ‘safe’ inr range ( . – . ), % (n = ) of patients were successfully monitored. only % (n = ) of patients had an inr in the range of . – . . % (n = ) of patients had an inr [ . and % (n = ) \ . . % (n = ) were recently prescribed antibiotic therapy which is known to interact with warfarin, this was the main reason identified for those who were outside of the target range. conclusion: patients within target inr range ( %) were much higher than that reported in the warfarin arms of new oral antico- agulants (noacs) trials (generally %). noacs may not be more effective than carefully monitored nurse-led anticoagulation clinics. future studies should examine the length of time in therapeutic range especially for patients with poor inr control. p stroke syndromes: are we lost for words? amanda lavan , irene hartigan , paul gallagher , kieran o’connor cork university hospital, health service executive, cork, ireland; school of nursing and midwifery, university college cork, cork, ireland; mercy university hospital, cork, ireland background: the subtypes of ischaemic strokes are often classified according to their anatomical location or the oxford community stroke project classification (ocsp, also known as the bamford or oxford classification ). the classification of stroke is useful to help our understanding of brain structure and impairment post-stroke. the national stroke register recommends documenting stroke severity according to the national institutes of health stroke scale (nihss ). in conjunction with neuroimaging, the nihss is often used to char- acterise acute stroke-related neurological impairment. an audit was conducted to review the documentation of ischaemic strokes in an acute hospital. method: a retrospective audit was conducted on stroke patients’ charts who were admitted to an acute hospital between september and december . data were collected on stroke risk factors, cause of stroke and stroke syndrome. results: the mean age of participants was . years (range – ). the majority of strokes ( %) were classified according to ana- tomical location and only % were classified according to the ocsp. both the ocsp and anatomical location were documented in % of cases. a neurological examination was documented in % of cases and only % had a nihss recorded. % of cases received thrombolysis and less than half ( %) had the cause of stroke doc- umented. however, % of cases had their stroke risk factors documented. conclusion: this audit summaries data documented in patient charts post-stroke. the pathophysiology of different stroke subtypes is not well understood therefore consideration should be given to docu- menting neurological impairment and cause of stroke so that care is organised to meet individual patient needs. references: . bamford j et al ( ) classification and natural history of clinically identifiable subtypes of cerebral infarction. lancet ( ): – . national institute of health, national institute of neurological disorders and stroke. stroke scale. http://www.ninds.nih.gov/doctors/nih_stroke_scale.pdf p withdrawn ir j med sci ( ) (suppl ):s –s s http://www.ninds.nih.gov/doctors/nih_stroke_scale.pdf p acute stroke calls to dublin fire brigade ambulance service – martin o’reilly , derek hayden , colm byrne , blathnaid murphy , tara daly , suzie doyle , sean murphy , christine newman , peter kelly , sean murphy dublin fire brigade ambulance service, dublin, ireland; mater hospital, dublin, ireland background: a key component in the ‘stroke chain of survival’ is the pre-hospital phase which involves the emergency notification of the ambulance services, rapid deployment of appropriately trained paramedical staff/ambulance, initial patient assessment using the face-arm-speech test (fast) and prompt removal of the acute stroke patient to the receiving hospital emergency department (ed) with pre-notification. this study examines the various time-lines during the pre-hospital phase of suspected stroke in dublin. methods: dublin fire brigade (dfb) computer records for – were retrospectively examined. a series of time intervals between the initial phone call to the ambulance dispatcher and hospital ed arrival were recorded as well as whether hospital pre-notification took place. results: dfb ambulance service transported suspected acute stroke patients to all dublin teaching hospitals. there was a steady increase in the annual number of calls dispatched as suspected stroke from in – in ( % increase). the proportion of ed pre-notifications more than doubled from . % in to . % in . the initial call to ambulance dispatch time remained stable over time ( – minutes). the interval between initial telephone call to time on scene varied between and minutes. time on scene gradually increased from to minutes between and . time from scene to hospital ranged between and minutes with little change over time. overall ems contact to hospital ed arrival time increased steadily from to minutes between and . conclusion: the volume of suspected acute stroke cases increased significantly between and in dublin. a trend to greater on- scene time reflects the time needed to carry out a more detailed on- scene clinical assessment and clarify clinical details including time of symptom-onset. there will be ongoing scope to further enhance ambulance paramedical staff training in early stroke recognition, hospital pre-notification and future potential to provide pre-hospital hyper-acute treatment. p a clinical audit to evaluate the efficacy of an active physiotherapy service in a cohort of elderly parkinson’s disease patients in an inpatient rehabilitation setting éilis hennessy our lady’s hospice and care services, dublin, ireland background: the purpose of this clinical audit was to evaluate the efficacy of an inpatient physiotherapy rehabilitation programme and the sensitivity of the chosen outcome measures, in detecting a reduction in falls risk factors for parkinson’s disease patients. the outcomes of interest were functional transfers, mobility and balance. the berg balance scale (bbs) is the gold standard tool used to assess falls risk status. the timed up and go test (tuag) is used to measure patients’ ability to perform sequential locomotor tasks that incorpo- rate walking and turning. the validity and reliability of both tests have been established in this population. methods: the study design was a clinical chart audit over a months period. in patients with a diagnosis of parkinson’s disease were included. subjects were aged years or older, both male and female. outcome measures reviewed were the tuag and the bbs. data was analysed using microsoft excel. results: subjects were identified with subjects included in the audit male, female. following participation in the rehabilitation programme, an average group improvement of seconds was achieved in the tuag and . points in bbs. the number of subjects scoring in the ‘ % falls risk’ category (bbs) fell from to and in the ‘high risk of falls’ category fell from to . similarly, in the tuag, the number of subjects scoring in the ‘normal \ seconds’ category increased from to . conclusions: clinically significant improvements for both the bbs and tuag were achieved. these improvements exceeded the rec- ommended normative mdc values (minimal detectable change) for both tests. this audit highlights the value of this unique rehabilitation service in reducing the risk of falls, improving mobility and in pro- moting positive ageing, in this population. p the use of hour holter monitor and echocardiogram in the investigation of acute ischaemic stroke zoe hutchinson, james mahon, joseph browne, imelda noone, morgan crowe, serena hatton st. vincent’s university hospital, dublin, ireland background: atrial fibrillation (af) is a common cause of ischaemic stroke in the elderly. a -hours holter monitor is often used to screen for af. echocardiograms are also frequently used to assess valvular pathology and identify mural thrombus. both tests are expensive and time-consuming. we examined if these tests were ordered appropriately. methods: we interrogated the hipe database and identified all cases of stroke and transient ischaemic attack (tia) in . we noted; whether an echocardiogram or holter was performed and if af was present previously or on admission ecg. results: patients had either stroke or tia. holters were performed on patients ( %); ( %) had a prior diagnosis of af. ( %) had pre-morbid af, of whom had af on their admission ecg. were diagnosed with new (or previously unknown) af. of the , were diagnosed based on admission ecg, and a further using a holter. in total, had af based on either a prior diagnosis or admission ecg, but of these had a holter during the admission. cases of af were identified in total ( known and new), a prevalence of %. regarding echocar- diograms, the same cohort was examined and a total of echocardiograms were performed on ( %); of the echocar- diograms, were transthoracic and were transoesophageal. mitral regurgitation was the most common valvular abnormality; no echo- cardiogram identified mural thrombus. conclusion: % of the cohort had holters and some of these were unnecessary as they had a pre-morbid diagnosis of af. the holter may have been ordered for reasons other than af screening however. ‘‘repeat’’ holters were performed, possibly a misuse of resources but extended monitoring increases the detection rate of paf. echo- cardiograms are a low-yield investigation in this context. s ir j med sci ( ) (suppl ):s –s p adherence to esh/esc guidelines for management of hypertension in older adults in a nursing home population l murphy, kp james, e o’connor, a martin beaumont hospital, dublin, ireland background: the esh/esc guidelines for the management of hypertension include recommendations for older adults. for those aged [ , a target systolic blood pressure (sbp) between and mmhg is recommended, provided the patient is in good physical and mental condition and has no other cardiovascular (cv) risk factors. these guidelines are particularly applicable to nursing homes (nh) where many residents are aged over . this audit aims to examine patterns of sbp and use of oral antihypertensives (ohas) in a cohort of nh patients. methods: the audit was performed in an irish community nh. all patients aged over were eligible for inclusion. medical and drug prescription records were reviewed to obtain data regarding sbp, medical history and medications. results: patients were included ( . % female) with a mean age of . ± . years. mean barthel index was . ± . . the mean sbp for the study population was . ± . mmhg. . % were documented as being hypertensive. . % of the patients had addi- tional cv risk factors. mean sbp for those with cv risk factors was . ± . . . % of the population and . % of those with cv risk factors were on ohas. the median number of ohas used was . the most commonly used ohas were beta blockers ( . %) and ace inhibitors ( . %). . % of patients were documented as having hypotension at some point. . % of those patients on ohas had experienced hypotension. conclusions: nh patients aged over are more likely to be frail. in this nh population, mean sbp was lower than that recommended in international guidelines. there was also a high prevalence of hypo- tension particularly in those treated with ohas. this may potentially increase the risk of falls and adverse events. the results of this audit highlight the importance of medication review in this cohort of patients. p use of oral antihypertensives in frail nursing home residents kp james, l murphy, e o’connor, a martin beaumont hospital, dublin, ireland background: frailty, immobility and dementia are all more common in nh residents. the esh/esc guidelines provided guidance on the management of hypertension in the over seconds, recom- mending a target systolic blood pressure (sbp) between and mmhg provided the patient is in good mental and physical condition. this is challenging to implement in the nh setting. this study aims to examine patterns of blood pressure management in very frail nh residents. methods: the study was performed in a community nh. all patients over were eligible for inclusion. medical and drug prescription records were reviewed. data regarding mean sbp, medications and frailty as measured by the barthel index (bi) were recorded. results: patients were included ( . % female). mean age in the population was . ± . years. mean sbp was . ± . mmhg. mean bi was . ± . . % of patients were immobile (wheelchair or bed bound). % had a bi b (mean . ± . ). the mean sbp in this group was . ± . mmhg. mean sbp in the group with bi [ was . ± . mmhg. the median number of ohas used in the total study group was with . % of the study population prescribed ohas. in the frailer subset, % of the patients were on ohas. the majority were on one oha ( %) but one bedbound patient was on four different ohas. patients with a bi \ were more likely to have experienced hypo- tension ( vs. . %). conclusions: the current guidelines do not include advice for bp targets in frail and immobile patients. in this study, bp was lower in the frailer group. many of these patients were still receiving antihy- pertensives. this study highlights the importance of assessing cardiovascular risk on an individual basis in the management of nh residents. this will potentially avoid unnecessary use of ohas in those with reduced life expectancy. p the barriers to diagnosing dementia in primary care: a qualitative gp registrar perspective aisling jennings, tony foley university college cork, cork, ireland background: in ireland we are facing a dramatic rise in the number of people with dementia, from , in to , by ( ). primary care will inevitably have to take on an increasing workload of dementia care. the aim of this research is to examine the attitudes of irish general practitioners to the barriers that they face when diagnosing dementia. methods: a qualitative approach using two focus groups. the participants were all currently working as gp registrars. the contents of the focus groups were transcribed and analysed according to the principles of grounded theory. results: three major barriers to diagnosing dementia in primary care were identified: ( ) time limitations: the reasons for this barrier were; use of inappropriate cognitive assessment tools, the opinion that dementia is a particularly complex diagnosis, viewing the diagnosis of dementia as a point-in-time diagnosis. ( ) place: uncertainty as to whether the diagnosis should be made in primary care. the main reasons were diagnostic uncertainty and difficulty subtyping the dementia in primary care. ( ) disclosure difficulties: reasons for this barrier included; the diagnosis could potentially negatively impact on the doctor-patient relationship, the term dementia is stigmatized, and the fact that disclosing could poten- tially do more harm than good. conclusions: this research identified a need for further education that focuses on gps perceptions of their suitability and ability to diagnose dementia. if we do not address the barriers gps face when making a diagnosis of dementia then we will not be able to implement improvements in education and resources to facilitate the necessary changes in service configuration that are required to deal with the future rise in dementia prevalence. reference: . o’shea e ( ) implementing policy for dementia care in ireland: the time for action is now. the alzheimer’s society of ireland ir j med sci ( ) (suppl ):s –s s p to resus or not to resus? a month cross section view of in-patient resuscitation outcomes in an aged population emma jennings , roisin mcnamara , fiona o’sullivan , keith mcgrath , catherine peters , margaret o’connor , declan lyons , ann kenny-ryan , marie o’hora division of ageing and therapeutics, department of medicine, university hospital limerick, limerick, ireland; department of medicine, resus training department, university hospital limerick, limerick, ireland background: there is little evidence illustrating the outcomes of inpatient cardiopulmonary resuscitation [cpr] in an aged population. age alone is a poor predictor of resuscitation outcome, and rates of survival tend to be lower. resuscitation status orders are common in caring for the aging population and require adequate evidence of prognosis and outcomes for an informed decision. survival to dis- charge post cpr in patients over ranges from to %. this project was aimed at identifying outcomes immediately post and in the months following cardiac arrest. methods: design: retrospective study. resus cases over months [ ] were identified via the resus department arrest records. patients aged years or older on date of cpr were included. hos- pital patient administration system and ados document management systems in correlation with online obituary listings were searched for resuscitation survival, survival to discharge, death within months, nursing home resident status, admission and representa- tions post resuscitation. psaw statistics were then utilised for statistical analysis. results: arrest calls occurred; event records were present for cases; only had acceptable patient identification (median . years); were c years (median age years). in this cohort, ( %) required cpr, ( %) achieved return of spontaneous circulation; ( %) had a median survival of days; ( %, median years) survived to discharge home with surviving to days; ( %) were still alive, residing at home months post with mean numbers of presentations to the emergency department post event of and admissions . . conclusion: documentation and recording of arrest events was substandard. rates of survival to discharge post cpr were similar to those published previously at %. patients that survived to dis- charge tended to do well with % still residing at home months post event. p audit: prevalence of proton pump inhibitor use in acute medical and surgical in patients rosemarie keenan , emer ahern , abirami subramaniam , breda cushen , james dalrymple , arjun sharma st. luke’s hospital kilkenny, kilkenny, ireland; university of limerick, limerick, ireland background: proton pump inhibitors (ppis) were the third most frequently prescribed drug in ireland in on the gms. while very effective in treatment of gord they are expensive and there is evi- dence to suggest overprescription in inpatient populations. the cost has increased from million euro in to million euro in . targeting inappropriate ppi prescribing will help reduce costs as well as unnecessary side effects. methods: the prevalence of ppi use in acute medical and surgical patients was recorded over one day using a prepared audit sheet. data including demographics, ppi preparation and the indication for use and duration of therapy was collected from patient’s medical notes. the national institute for clinical excellence (nice) guidelines on the use of ppi in the treatment of dyspepsia were used to monitor adherence. results: data was collected on medical and surgical inpa- tients. of those, ( %) medical and ( %) surgical inpatients were on a ppi. the majority were male ( %) with a mean age of years (range – ). , and patients were on a ppi for more than months, less than months and unknown length of time respectively. medical and surgical patients had documented indications for ppi use. ten out of fourteen endoscopies reported abnormal findings. in our population the most commonly prescribed ppi was esomeprazole mg ( %). conclusions: these results demonstrate poor adherence to nice guidelines. of note, the mean age of our inpatient population is . unnecessary ppi prescribing can affect the bioavailability of com- monly prescribed drugs in the elderly. long term ppi use also affects bone metabolism possibly leading to hip fractures in the elderly. regular review is necessary to assess need for ppis allowing for more economical prescribing as well reducing potential harmful effects. p assessment of functional capacity in metabolically healthy obese older adults cormac kennedy , david robinson , roman romero-ortuno , diarmuid o’shea , rose anne kenny , donal o’shea , jean o’connell st. vincent’s university hospital, dublin, ireland; st. james’s hospital, dublin, ireland; tilda, dublin, ireland background: a recent study of walking distance and gait speed found that metabolically healthy obese (mho) women had a better functional capacity than non-mho women . also, the criteria defining mho varies considerably . we hypothesise that the mho individuals have better markers of functional capacity compared to their metabolically unhealthy obese (muo) counterparts. we com- pare these markers within obese cohorts created using world health organisation (who) criteria based on either body mass index (bmi), waist hip ratio (whr) or waist circumference (wc). tilda consists of a stratified clustered sample of , individuals c years rep- resentative of the community dwelling population. methods: cross sectional data was collected by in-house question- naire and centre-based physical health assessment. individuals were divided into the mho and muo groups according to criteria adapted from the international diabetes federation definition of metabolic syndrome. gait speed, timed get-up-and-go, exhaustion and fear of falling were identified as markers of function and results analysed by regression analysis. results: the percentages of mho among the obese cohorts were . , . and % for bmi, whr and wc based criteria respectively. a greater gait speed is evident for the mho groups regardless of obesity measurements used; bmi ( . ci . – . ), whr ( . ci . – . ), wc ( . ci . – . ). all functional markers trend towards improved outcomes in the mho groups compared with their muo counterparts. conclusion: a comparison of these mho groups with their muo counterparts suggests that they may have improved functional capacity regardless of obesity criteria used. it emphasises the importance of aligning resources to maintain metabolic health in older adults. s ir j med sci ( ) (suppl ):s –s p aetiology of acute stroke presentations to a hospital dzulkarnain khalil, claire farrelly, mian basit, martin mulroy, olwyn lynch, michael cotter, james close, jurate butkeviciute, mahvish zeeshan, lydia man, ihedinachi ndukwe, maimuna ismail, aman rao our lady of lourdes hospital, drogheda, ireland background: acute stroke is a major cause of mortality and morbidity worldwide. the specific aetiology of stroke affects outcome, prognosis and management. this study was to highlight the commonest aetiol- ogy of stroke presentations to the hospital over a month period. methods: data was collected retrospectively from our stroke multi- disciplinary governance meetings and chart reviews. data was collected over a period of year, from / / to / / . results: patients ( male, female) were included in the study. patients were\ years old, patients between age – and patients were above years of age (mean age . and median age ). there was similar gender distribution in each age group. the commonest aetiology was found to be cardioembolic ( patients ( %)), cryptogenic ( patients ( %)), carotid disease patients ( %) and other causes patients ( %). ( %) patients had a primary haemorrhagic stroke. conclusion: this study confirms that the commonest aetiology of ischaemic stroke in the local population is cardioembolic (primarily atrial fibrillation), followed by cryptogenic and carotid disease. p atrial fibrillation: a preventable cause of ischaemic stroke dzulkarnain khalil, mian basit, martin mulroy, olwyn lynch, michael cotter, james close, jurate butkeviciute, mahvish zeeshan, lydia man, ihedinachi ndukwe, claire farrelly, aman rao, maimuna ismail our lady of lourdes hospital, drogheda, ireland background: atrial fibrillation (af) is the commonest cardiac arrhythmia and increases ischaemic stroke risk up to five fold. the cha ds -vasc score has been established to identify those with af the annual risk for developing an ischaemic stroke. this review enumerated the premorbid cha ds -vasc score of the patients who were admitted with an acute ischaemic stroke secondary to atrial fibrillation. method: data was collected retrospectively through our documented stroke multidisciplinary governance meetings and chart reviews. data was collected from stroke admissions to our lady of lourdes hos- pital, drogheda from the period of / / to / / . there were a total of stroke admissions, being cardioembolic as the aeti- ology ( %). results: patients were included in the study. patients ( %) had a cha ds -vasc score of greater than pre-admission, indi- cating that they should have been anticoagulated if their atrial fibrillation was previously diagnosed. only patients ( %) had a premorbid cha ds -vasc score of less than . conclusion: this study reiterates atrial fibrillation as being a pre- ventable cause of ischaemic stroke and disability. population screening and appropriate anticoagulation as primary prevention should be considered in future, which will significantly impact posi- tively in mortality and morbidity. p the relationship between cardiac health and physical activity levels in older adults sean kilroy, aileen lynch, gabrielle mckee trinity college dublin, dublin, ireland background: cardiovascular diseases (cvds) is the leading cause of mortality worldwide killing an estimated million people each year. risk factors for cvd include age, gender, physical inactivity, obesity, smoking, excess alcohol consumption, diabetes, high blood pressure and high cholesterol levels. physical inactivity contributes to approximately % of the cvd burden and is considered the th leading risk factor for death worldwide. although physical activity (pa) tends to decrease with age, it is recommended that older adults do at least minutes of moderate-intensity pa a week. however, in ireland, over % of those aged and over report low levels of pa. objective: to examine the associations between pa level and cardiac health in older adults. methods: a cross-sectional analysis of a population based sample of older irish adults aged c years using data from the first wave of the irish longitudinal study on ageing (n = , ). pa was measured using the international physical activity questionnaire (ipaq). logistic regression analysis was utilised to examine the associations between pa level and cardiac health. results: participants age ranged from to years, comprising of , ( %) males and , ( %) females. overall, % of older adults reported the recommended pa levels. those who did not meet the recommended pa levels where significantly more likely to be older, female, diabetic or have high blood sugar levels, have a higher bmi and higher levels of cholesterol. older adults who suffered a heart attack or a stroke were less likely to report the recommended pa levels. overall, our model was significant, x ( , n = ) = . p \ . . conclusion: consistent with the majority of research, our results support the protective effect of the recommended pa levels on car- diovascular health. p delirium prevalence in older persons attending an irish acute medical unit áine heaney , diane krajewski , sean p kennelly school of medicine, trinity college dublin, dublin, ireland; acute medical unit, tallaght hospital, dublin, ireland background: delirium is an acute change in cognition often mani- fested as disorganised thinking, inattention, and altered consciousness. delirium is associated with adverse outcomes such as prolonged hospitalisation, accelerated functional and cognitive decline, increased mortality and increased need for residential care, but despite this it frequently goes undetected. the objective of this study was to deter- mine the prevalence of delirium in an irish acute medical unit. methods: cognitive status was assessed using the standardised mini- mental state examination (smmse), on a convenience sample of patients aged c years attending the acute medical assessment unit (amau), or within hours of admission to the short-stay medical ward between february and march . the confusion assessment method for the icu (cam-icu) assessment which incorporates a collateral history was administered to screen for delirium. daily cam-icus were performed for days or until discharge. cognitive screening was repeated if a change in cam-icu was observed. ir j med sci ( ) (suppl ):s –s s medical records and primary care referral letters were reviewed on all patients and -item delirium risk score was calculated. patients with evidence of cognitive impairment had an ad screening instrument completed to identify evidence of functional decline consistent with a diagnosis of dementia. results: / potentially eligible patients (age . ± . years, female %) who attended the amau were included. / ( . %) had a pre-existing diagnosis of dementia. / ( . %) patients had a smmse of b / , and of these / ( %) had evidence of recent functional decline on their ad assessment. / ( . %) had a positive cam-icu assessment. no patients subsequently developed delirium after initial negative cam-icu assessments. / ( %) had at least risk factors for developing delirium. conclusions: the prevalence of delirium in older acute medical unit patients is approximately %. the cam-icu is a useful brief screening instrument to assist the identification of delirium in the acute medical setting. p identification of cognitive impairment and dementia in older persons in the acute medical setting diane krajewski , áine heaney , grainne m murray , nichola sandys , sean p kennelly school of medicine, trinity college dublin, dublin, ireland; acute medical unit, tallaght hospital, dublin, ireland background: the incidence of cognitive impairment and/or dementia is rising in line with ageing demographics. coexistent dementia in hospitalised patients is associated with longer hospital stays and poorer outcomes, especially when undetected. the objective of this study was to compare the performance of two brief cognitive screening instruments; the shortened version of the abbreviated mental test (amt- ), widely adopted in uk acute clinical settings, and the longer amt- ; to the established standardised mini-mental state exam (smmse), and assess the validity and practicality of these shorter instruments in detecting cognitive impairment. methods: the smmse, amt- and amt- were administered to a convenience sample of patients aged c years presenting to the acute medical assessment unit (amau), or within hours of acute medical unit (amu) admission in february–march . medical records and primary care referral letters were reviewed on all patients. where cognitive impairment was suspected, an ad dementia screening interview was administered to identify functional decline consistent with dementia. results: patients (age . ± . years, female %) who attended the amau were screened. / ( . %) had a pre-existing diagnosis of dementia. / patients ( . %) had a smmse of b / , and / ( %) of these had evidence of functional decline on their ad assessment. when these participants were examined, / ( . %) were identified by the amt- and / ( . %) by the amt- . compared to the smmse, the amt- has a sensitivity of % and specificity of %, and the amt- has a sensitivity of % and specificity of %. conclusions: many of the patients with cognitive impairment had no prior diagnosis. cognitive screening instruments in acute areas need to be reliable, simple, and brief, and while the amt- fulfills some of these criteria this study raises concerns regarding it sensitivity. fur- ther studies with larger sample sizes are necessary. p clinical experience of denosumab at a specialist bone health unit rosaleen lannon, kevin mccarroll, nessa fallon, miriam casey, jb walsh bone health unit, mercer’s institute for research on ageing, st. james’s hospital, dublin, ireland background: denosumab is available to treat severe osteoporosis since october . it is an antiresorptive agent which has been shown to reduce fracture risk and increase bone mineral density (bmd) in clinical trials. method: we reviewed records of subjects who received denosumab in our bone health clinic for follow up dxa results up to may . results: follow up dxas were available. mean age . ± . years. mean time to next dxa following commencement of drug was . ± . years (median . years). subjects had spinal results and had hip results. reasons for non-availability of spine or hip scores include vertebrae not suitable for analysis due to fracture or degenerative disease or bilateral hip replacements respectively. spinal t-scores improved in subjects from a mean of - . to - . . in subjects t-score deteriorated on average . sd with the remaining subject remaining the same. t scores at hip showed an average improvement of . sd in subjects with showing a deterioration of . sd and having same t-score reported. it was noted that of the patients were diagnosed with new fractures; had new vertebral fractures on the follow-up dxa; a clinical vertebral fracture at months and had upper limb fractures—a colles fracture at just month after starting the drug and a humeral fracture at year. conclusion: overall our results show in patients with follow-up dxa on denosumab in a clinical setting there is a % increase in bmd at the spine and an % increase at the hip. this is consistent with the literature [ ]. reference: . mcclung mr et al ( ). effect of denosumab on bone mineral density and biochemical markers of bone turnover: -year results of a phase clinical trial. osteoporos int ( ): – p a study of patients with bilateral colles fractures attending a specialist bone health clinic rosaleen lannon, niamh murphy, georgina steen, miriam casey, jb walsh bone health unit, mercer’s institute of research on ageing, st. james’s hospital, dublin, ireland background: colles fracture is the term for fracture at the distal end of radius originally described by irish surgeon abraham colles in . it is the most common fracture in females between and years and a significant risk factor for further fracture especially hip and vertebrae. presentation may be an early indicator of osteoporosis. several studies have highlighted that people rarely undergo screening for osteoporosis after colles fracture. in this study we focused on patients with documentation of bilateral colles fractures at least on first contact with our service and reviewed their bone health history prior. s ir j med sci ( ) (suppl ):s –s method: data was collected from an existing database where patient demographics, fracture and medical history as well as biochemical and bone density results are recorded. results: we identified patients documented as having at least colles fractures attending clinic between and . mean age ± years; females and males. of note ( %) were not on any treatment at first assessment, with ( %) of these referred due to their nd colles fracture. all bar of these had established osteoporosis as per bmd on dxa. in this cohort ( %) patients were referred for assessment of established osteoporosis discovered on dxa ordered by referring doctor at an interval of – years after patients nd colles fracture. a further ( %) were referred for dxa and assessment due to fracture history; ( %) were referred due to hip or vertebral fracture. of those on treatment were referred due to their second colles fracture; most were referred due to fractures at other sites or deteriorating bmd despite treatment. conclusion: patients with colles fracture are at high risk of further fracture and development of established osteoporosis. prompt iden- tification and screening after index fracture could lead to a significant reduction in further morbidity. p vitamin d in acute hip fracture rosaleen lannon, evelyn lynn, brendan mccarthy, niamh maher, miriam casey, kevin mccarroll, jb walsh bone health unit, mercer’s institute for research on ageing, st. james’s hospital, dublin, ireland background: vitamin d is considered an important therapy in pre- vention of fracture in known osteoporosis. hip fracture is one of the most serious fractures and confers significant morbidity and mortality. supplementation in those not known to be osteoporotic is contro- versial though generally recommended in the elderly, institutionalisation or known vitamin d deficiency. however vitamin d deficiency itself is not widely screened for. in this study we aimed to establish the prevalence of vitamin d deficiency in consecutive admissions with hip fracture. methods: follow up vitamin d levels were carried out at subsequent visit to bone health clinic. all subjects admitted with acute hip fracture from september to september were reviewed by a fracture liaison team. serum samples were taken for bone profile, serum (oh)vit d and pth. combined calcium and vitamin d supplements as well as bisphosphonate therapy, if no contraindica- tion, were prescribed. results: subjects with hip fractures were admitted to our insti- tution from september to september . mean age . years. / ( %) had serum vitamin d levels performed. mean vitamin d . nmol/l. median nmol/l. / ( %) were vitamin d deficient—levels \ nmol/l. so just under half had levels under nmol/l. secondary hyperparathyroidism was evident in latter group with mean serum pth levels of pg/ml ( – ) compared to pg/ml in the total study population. subjects were prescribed vitamin d supplementation. ( %) had levels \ nmol/l suggesting non-compliance. by april subjects had attended the bone health clinic for follow up—mean vitamin d levels had risen to . nmol/l conclusions: vitamin d deficiency is widespread in an older popu- lation presenting with hip fracture. supplementation is not. compliance is poor in those who are prescribed supplementation pre hip fracture. patients who start vitamin d supplementation post hip fracture show adequate response and optimal vitamin d levels on review. p setting our goals on a gerontological rehabilitation unit from a nursing perspective joanne larkin, avril mckeag, michelle keane cappagh national orthopaedic hospital, dublin, ireland background: the active rehabilitation unit takes patients from two acute dublin hospitals; it is an off-site unit that facilitates clients. the unit opened in response to the national clinical care programme for the frail and elderly. these clients are aged over and have multiple co-morbidities. this project reviewed the patient from a nursing perspective assessing the change in key performance indi- cators such as the fall prevention programme; pressure ulcer prevention and the barthel index. methods: a retrospective review of a sample of a month period was undertaken. the barthel index was assessed from admission to discharge. a falls prevention programme was implemented and we engaged in the national programme for pressure ulcer prevention. data was collected on a weekly basis and statistics reviewed. results: since the establishment of the unit (october ) we have admitted patients ( % female/ %male) with an average age of years and an average length of stay of days, ( %) discharging home. the barthel index showed an improvement from . on admission to . on discharge showing an average improvement of . %. following the implementation of a falls programme we documented a decrease in the number of falls com- pared to the same period in previous year ( compared to ) and with the pressure ulcer prevention programme we documented acquired pressure ulcer in the three month period. conclusion: input of a multi-disciplinary team has allowed us to see an improvement in the barthel score and the implementation of a falls prevention programme has shown to be positive in reducing the number of falls. education from the nursing perspective in this frail and elderly population has highlighted the benefit of collaborating with other nursing groups in this adult population. p mortality rate and associated factors in older adults following hip fracture niamh maher, georgina steen, nessa fallon, kara fitzgerald, joseph browne, rosaleen lannon, kevin mccarroll, jb walsh, miriam casey st. james’s hospital, dublin, ireland background: increased mortality rates following hip fracture have been identified in the literature varying between and % at month and % at year. while part of this excess mortality may be due to other comorbidities it is estimated the % of the death rate is due to the hip fracture itself. methods: all patients in this study were participants in a randomised control trial examining if follow up in a bone health clinic improved outcomes. inclusion criteria were c years and mmse c . partici- pants were followed up for months with monthly telephone calls. information on mortality was obtained from the hospital’s electronic patient’s records system (epr), online death notice site (rip.i.e.) and telephone calls to next of kin. randomisation carried out by computer- ised minimisation programme. data analysed using spss. results: patients attended study site between and . mean age; years, range – years. % females. overall mortality rate was % at month and % at year. of these, ir j med sci ( ) (suppl ):s –s s participants were recruited to our study. mean age: years (± years) females and years (± years) males. mortality rate was % at month and % at year. factors associated with increased mortality were male gender (p = . ), older age (p = . ), reduced cognition (p = . ), admission from nursing homes (p = . ), increased length of stay (p = . ), discharge to ltc (p = . ), reduced pre-fracture mobility (p = . ), ability to self care (p = . ), polypharmacy (p = . ), reduced bmd at spine (p = . ) and presence of vertebral fractures (p = . ). conclusion: mortality rate was lower than previous studies. this may reflect study participants being healthier and less cognitively impaired. it may also reflect the presence of an established orthoge- riatric service with early access to surgery as % were operated on within hours of fracture. p non-attendance at a bone health clinic following hip fracture niamh maher, nessa fallon, georgina steen, dymphna hade, rosaleen lannon, kevin mccarroll, miriam casey, jb walsh st. james’s hospital, dublin, ireland background: hip fractures are a major cause of burden in terms of mortality, disability, and costs. in ireland, , hip fracture occur annually and is expected to increase over the coming years ( ). estimated cost of hip fractures is € , per admission ( ). outpa- tient non-attendance is a source of inefficiency, wasting time, resources and lengthens waiting lists. non attendees have a significant negative impact on productivity, their own care and resources. in , an estimated , out-patient appointments were broken in our institution, at an estimated cost of € , , ( ). in this study we aim to identify the reasons for non- attendance at an osteoporosis clinic following hip fracture. methods: hip fracture patients admitted to study site from june to june assessed by an orthogeriatric team and offered an appointment in a bone health clinic. results: hip fracture patients were admitted to study site. ( %) got no appointment as ( %) did not want one, ( %) were too frail, ( %) were non-residents in country/county and ( %) had metastatic disease. ( %) attended for a clinic appointment while ( %) did not. mean age of non-attendees . years. reasons for non-attendance included reduced mobility ( %), rip ( %), cancelled ( %), cognitive impairment ( %), alcohol excess ( %), cancer ( %), longterm care (cognitive impairment ± reduced mobility) ( %) conclusion: non-attendance at outpatient appointment is considered an indicator of poorer access to health care services and may lead to worse health outcomes, increasing costs and waiting times. in order for health service providers to be able to allocate adequate resources for the management of hip fractures, accurate figures for fracture rates and outcomes should be measured. given the current economic cli- mate, methods need to be employed to reduce non-attendance. references: . cullliton g. clinical update on osteoporosis. imt . . cotter pe, timmons s, o’connor m, twomey c, o’mahony d. the financial implications of falls in older people for an acute hospital. ir j. med scien apr-jun; ( ): . d hennessey, ss connolly, g lennon, d quinlan, d mulvin; out-patient management and non-attendance in the current economic climate. how best to manage our resources? ir med j. mar; ( ): – . p recording patient identification data on geriatric wards sean kelleher, alison mchugh, mark murphy, maitiu o’tuathail, james mahon st. vincent’s university hospital, dublin, ireland background: recording patient identifying details in the medical notes is important, as it reduces clinical errors. it also ensures the validity of the medical notes as a legal document. we set out to examine if good practice is followed in our university hospital geri- atric department. our local hospital guidelines—in keeping with national best practice—state that all pages in a patient’s medical notes must carry the identifying details of the patient’s name and either date of birth (dob) or medical record number (mrn). methods: over a -week period we randomly selected charts at different times of the day on two medical wards. we recorded whether a patient id sticker was in place on the most recent page of the medical notes; if it was not, we recorded if name and mrn or dob had been hand-written. we also recorded which professional specialty had made the most recent entry (doctor, nurse, physio- therapist, ot, etc.) and whether or not id label stickers were available in the chart. results: of entries examined, contained an id sticker; had no id sticker but did have a hand-written name and either mrn or dob; had name hand-written, but no mrn or dob; had no identifying details. of the entries not meeting the criteria for adequate doc- umentation, were made by doctors and by others. doctors accounted for entries of the total . id stickers were available in all charts. conclusions: approximately one-third of entries had inadequate patient id. although doctors made approximately two-thirds of the chart entries, they were responsible for a disproportionately high number of inadequate documentation. the absence of id stickers does not seem to be a factor, as these were universally available. we have recommended changes to ameliorate practice. p the nursing home conundrum: a model for prospective interdisciplinary care james mahon, mark murphy, maitiu o’tuathail, zoe hutchinson, diarmuid o’shea, morgan crowe, graham hughes department of medicine for the elderly, st. vincent’s university hospital, dublin, ireland background: there are approximately , nursing home residents in the catchment area of our university hospital. many current nursing home outreach programmes are costly and resource-heavy, requiring physicians to visit patients individually. we developed a model of prospective interdisciplinary care via multidisciplinary team meetings (mdts) in nursing homes. methods: from january we held one mdt a month, encom- passing two nursing homes, discussing patients cared for by one gp. meetings were attended by gp, nursing directors, consultant geria- trician and specialist registrar. issues covered were medication review, advanced care planning (acp), resuscitation status and gen- eral medical advice. we recorded patient demographics and relevant outcomes and recommendations. we also held focus groups with patients and families. s ir j med sci ( ) (suppl ):s –s results: patients ( male, female); mean age . years (sd . ); mean frailty score . (sd . ); mean mmse (sd . ; had dementia; had an acp at time of mdt; had been transferred to hospital in the previous months; average number of medications at mdt was . (sd . ); average number of medica- tions stopped . (sd . , range – ), and average number started . (sd . , range – ); the most common medications stopped were nutritional supplements ( ) and cardiovascular secondary preventers ( ). patients had a recommended change in resuscitation status, and discussion of acp with patient or family was made in cases. focus groups with five patients and three families gave universally positive feedback. data on medication costs for a subset of nine patients indicates an average yearly saving of € . per patient. conclusions: this elderly and frail group—with a high dementia and medication burden—will benefit from interdisciplinary discussion involving primary and secondary care teams. we will expand this project within our catchment area and prospectively record numbers of hospital transfers and medication savings. p patient activity in a nurse-led clinic: active stand tests in a dedicated falls service audrey mc loughlin, anne o’driscoll tallaght hospital, dublin, ireland background: many clinicians measure orthostatic hemodynamic changes with non-invasive beat-to-beat finger arterial blood pressure monitors using a finometer machine. homoeostatic blood pressure responses to standing play a pivotal role in identifying individuals at risk of syncope/unexplained falls (finucane et al. ). by identi- fying who is at risk of syncope/falls, individualised measures may be devised and implemented to prevent such occurrences, benefiting the patient and organisation. methods: prospective audit of (a) active stand tests january- december , (b) referral sources for active stand tests (c) length of time from referral to test (d) education sessions for patients diag- nosed with orthostatic hypotension (oh). results: (a) active stand tests were performed january– december . test could not be performed on % of patients, due to poor circulation to hand, tremor, pain, or patient unable to lie in required position. (b) % opd referrals; % in-patient referrals. (c) in patient referrals n = . % of patients had test performed within days of which % were done within a day. % three weeks following referral as patients were discharged immediately after receiving referral. out patient referrals n = . % of patients had the test performed within month. the remaining % of patients had the test completed within months due to patient requests. (d) oh was detected in % of cases and led to education focusing on counter manoeuvres for oh. conclusions: orthostatic hypotension (oh) is the most common disorder of blood pressure regulation after essential hypertension and in normal older subjects the prevalence is reported between and %, increasing with age (low ). this study reinforces the necessity for nurse led active stand clinics to diagnose, advise and educate the patient on orthostatic hypotension in a timely manner. this prompt and accurate diagnosis will benefit the patient and organisation. p a retrospective review of the cognitive profile of post-stroke patients within an acute irish setting over a six-month period sarah mc nally, morgan crowe, imelda noone st. vincent’s university hospital, dublin, ireland background: a variety of cognitive screening tools are used to assess cognition in the acute stage post-stroke. the aim of the study was to complete an in-depth investigation of the cognitive profiles post- stroke within an acute irish setting. methods: cognitive screening tools, moca, mmse, ace-iii were collected on patients, which were under the stroke team. addi- tional data such as age, sex, discharge location, date of referral and date of assessment over a timeframe of months was also collected. results were compared and contrasted. results: of patients assessed, mmse/moca scores were recorded for patients. of those patients the average moca score recorded was / . the average mmse score recorded was also / . of those patients that had both an mmse and a moca score recorded, the average moca score was / and the average mmse score was / . % of patients who scored below the cut- off on the moca scored within normal range on the mmse. the remaining patients were unable to complete a cognitive assessment while patients completed a non-verbal cognitive assessment. of the patients that were unable to complete cognitive assessment % died and % were discharged to long-term care. conclusions: the author would advise caution when interpreting cognitive scores as they are subject to a variety of factors such as educational level, age and cognitive baseline. of interest, the results of this study correlate with published research identifying the inability to complete a standard cognitive assessment as a predictive indicator of increased mortality post-stroke. p cognitive frailty in older irish adults k mccarroll , a beirne , m casey , h mcnulty , s strain , m ward , e laird, a molloy , c cunningham mercer’s institute for successful ageing, dublin, ireland; department of gerontology, st. james’s hospital, dublin; northern ireland centre for food and health, coleraine, derry, northern ireland, biomedical sciences institute, trinity college, dublin, ireland background: physical frailty has been associated with an increased risk of cognitive impairment and future cognitive decline. recent studies support the concept of ‘‘cognitive frailty’’ as a condition that encompasses the presence of both physical frailty and cognitive impairment in the absence of dementia (international consensus group on ‘‘cognitive frailty’’ ). the physiological mechanisms underpinning this link are poorly understood though cardiovascular risk, depression and other factors may be potential mediators. we aimed to investigate for the presence of a potential relationship between cognition (across multiple cognitive domains) and physical frailty in a cohort of older irish adults. ir j med sci ( ) (suppl ):s –s s methods: study subjects were participants of the cognitive cohort of the tuda (trinity, ulster, dept of agriculture) study. all were community dwelling adults aged over who had cognitive impairment and attended a hospital based geriatric outpatient ser- vice. all subjects underwent a detailed assessment which included cognitive testing with the rbans (repeatable battery for the assessment of neuropsychological status), frontal assessment battery (fab) and the mmse. physical frailty was assessed with the timed up and go (tug). subjects with an mmse \ were excluded in our study. results: , subjects were included in our analysis (mean age . ± . , % female, mean tug . ± . seconds). all cognitive domains including rbans indices i, ii, iii, iv, v, total scale, mmse and fab were inversely associated with the time up and go (tug) before and after adjustment for age, gender, education, body mass index, presence of stroke and depression (ces-d ), (p \ . ). conclusions: physical frailty was associated with worse cognitive performance across all domains including executive function, visuo- spatial, language and memory. this highlights the inter-relationship between cognition and physical frailty in older adults without dementia and the need to further explore its underlying basis. p the development of a functional balance re-education class in a gerontological rehabilitation unit louise mccarron, mary nolan, kate o’ mahony, jill long cappagh national orthopaedic hospital, dublin, ireland background: evidence has shown that balance re-education is effective at reducing falls-risk in a frail elderly population. the aim of this study is to compare a new functional balance class (bc ) to a previous balance class (bc ) in a gerontological rehabilitation unit. methods: a prospective observational study evaluated the out- comes. a convenience sample of patients admitted to a post-acute rehabilitation ward from two large acute hospitals were recruited. a minimum score of in the berg balance scale (bbs) and the ability to participate in a class setting were necessary to be included. the bc incorporated functional balance re-education in addition to the static and dynamic component from bc . data was collected over a week period. relevant information included patient demographics, timed up and go scores (tug) and bbs mobility status and admission and discharge from the class. qualitative data was obtained through use of a patient satisfaction survey. result: patients were referred to the balance class over a week period. the age range was similar to bc with mean age . years. participants attended on average . number of classes during their inpatient stay. there was a mean improvement in tug scores of seconds (n = ) in bc compared to . seconds in bc . there was a mean improvement in bbs of . points (n = ) compared to . points in bc . when compared both results signified clinical relevance (brooks ). conclusions: larger improvements in tug scores were achieved in bc with similar outcomes in the bbs in both classes on discharge. the addition of an element of functional rehabilitation in bc achieved similar clinically relevant outcomes when compared to bc . brooks d, davis am, naglie g ( ) validity of physical per- formance measures in inpatient geriatric rehabilitation. arch phys med rehabil : – . p comparative accuracy of motion sensors for frail-older hospitalised patients ruth mccullagh , ann-marie o’connell , christina dillon , frances horgan , suzanne timmons university college cork, cork, ireland; royal college of surgeons, dublin, ireland background: older inpatients are physically inactive, potentially leading to functional decline and prolonged length of stay. accurate measurement of physical activity can motivate patients and guide healthcare. the aims of this study were to measure ( ) the step-count accuracy of the stepwatch ambulatory monitor (sam), activpal (ap ) and the piezo step-mv (psmv) motion sensors, and ( ) the position and transition accuracy of the ap . methods: this was a cross-sectional study. medical inpatients, aged c years, independent-walkers (n = ) and mobility-aid-users (n = ) participated in the study. they were video-recorded com- pleting minutes of predetermined typical activities while wearing the three motion sensors simultaneously. video-footage (gold stan- dard) was compared to the motion sensors’ step count, and position and transition accuracy of the ap . results: the ap accurately detected all positions and transitions ( %). patients walked an average speed of . m/seconds (± . ); mobility-aid-users walked slower at . m/seconds (± . ) than inde- pendent-walkers at . m/seconds (± . ). the ap undercounted steps by - % (± ). this error was higher in the mobility-aid-user group (- %, ± ) than for the independent-walker group (- %, ± ). similarly, the psmv undercounted steps by - % (± ) with the error greater in the mobility-aid-user group (- %, ± ) than independent- walker group (- %, ± ). conversely, the sam overcounted steps by + % (± ); this error was higher in the independent-walker group (+ %, ± ) than in the mobility-aid-user group (+ %, ± ). conclusion: the results suggest that the ap and psmv undercount steps in the frail-older hospitalised population. the sam accurately counts steps for mobility-aid-users, but it was oversensitive for independent-walkers. this sensitivity was set before recording; it appears correct for mobility-aid-users but too sensitive for indepen- dent-walkers. the specific set-up procedure warrants further attention to determine if it can lead to improved sam accuracy for the frail- older hospitalised group. p validation of the picture naming task from the nih stroke scale for an irish population meghan burns , kate somers , paul mcelwaine , joe harbison school of medicine, trinity college, dublin, ireland; department of gerontology, st. james’s hospital, dublin, ireland background: adopted internationally, the nih stroke scale was developed by us investigators as a means of standardising and scoring neurological examination in stroke patients in clinical studies. the scale includes a test of identification of objects as an assessment for nominative dysphasia. our experience was that apparently normal patients often struggled to identify some of these pictures. methods: we asked a population of subjects with no history of cognitive or language impairment to name each of the drawings as presented in the nih stroke scale. we determined if consistency of object naming could be improved by providing photographs of objects rather than drawings or if other objects with names of similar com- plexity would be more recognisable to our population. s ir j med sci ( ) (suppl ):s –s results: subjects ( women, mean age : men, mean age , p = . ) were interviewed. proportion of correct identifications were as follows; chair: subjects ( %), key: ( %), glove: ( %), feather: ( %), cactuses: ( %), hammock ( %). older subjects (c years) were less likely to identify, feather [ / ( . %) vs. / ( . %) p = . ], cactuses [ / ( . %) vs. / ( . %) p = . ]. hammock / ( . %) vs. / ( . %) p = . . photographs improved recognition of items in identification of ‘glove’ ( vs. subjects p = . fishers exact) and ‘feather’ ( vs. , p = . chi square) but not ‘hammock’ ( vs. . ns) or ‘cactuses’ ( vs. ) suggesting that subjects didn’t know what cactuses or hammocks were. recognition of drawings of alternative objects, tractor ( %), umbrella ( %) and elephant ( %) was superior to that of feather ( %), cactuses ( %) and hammock ( %). two subjects identified irish as their first language but struggled to find an irish word for hammock. conclusions: up to one-third of older people in our sample were unable to name some items from the nihss. subjects felt that sub- stitution of photographs tended to make identification of objects easier. object naming was more consistent when culturally familiar objects were substituted. p documentation of resuscitation status: an audit of current practice in an acute hospital paul mcelwaine, paul mcelhinney, deniz demirdal, david robinson department of gerontology, st. james’s hospital, dublin, ireland background: a complex and sensitive issue, no clear guidelines exist in ireland to assist doctors in making and documenting a do not attempt resuscitation (dnar) decision. uk guidelines would pro- mote documentation by senior members, inclusion of the patient and family in the decision making process and regular review of this decision ( ). our aim was to compare how our hospital complies with these uk guidelines prior to the introduction of a formal policy. methods: a day audit involving a semi-structured interview was held with senior staff on all wards in the hospital, excluding icu/ hdu, identifying inpatients with a dnar decision. the medical charts of those patients were assessed for level of documentation of the decision making process and who was involved. results: a total of patients (m:f : ), average age . ( – ) were identified on discussion with senior staff to have a dnar status from approximately beds. in / cases it was clearly documented that the patient was not for cpr. the decision was documented by the following: consultant/consultant-led ward round in / ( %) cases; spr/registrar in ( %); sho ( %); intern ; unclear . the decision was documented as dis- cussed with the patient in / ( %) and with the family in / ( %). in / ( %) the patient had diagnosis of cognitive impairment. cases were reviewed, with decisions made to change status back to full active management. conclusions: current practice in our hospital shows a wide variation and inconsistency in how this decision is documented and discussed. if the medical notes reflect current practice then we are not meeting sug- gested standards. the introduction of a resuscitation policy should improve documentation. reaudit following its introduction is planned. reference: . decisions relating to cardiopulmonary resuscitation. a joint statement from the british medical association, the resuscitation council (uk) and the royal college of nursing. (updated november ). p an audit of the physiotherapy stroke service at a model hospital in dublin colin mcgrath , sarah peppard , ania swietliczna , emer o’malley trinity college, dublin, dublin, ireland; st. columcille’s hospital, loughlinstown, dublin, ireland background: cerebrovascular accident (cva) is the most common cause of acquired physical disability in ireland, with walking per- ceived to be the biggest problem by patients following this event. intensive rehabilitation in the first months can aid significant recovery. we aimed to audit the stroke service at a model hospital and compare against best practice guidelines. methods: clinical data kept by the physiotherapy service from jan- uary to march was retrospectively analysed. inclusion criteria for this analysis were patients admitted with cva and receiving multi-disciplinary team input. participant data was excluded if physiotherapy input was ceased or suspended due to other medical complications. this data was compared against recommended guidelines as outlined by the irish heart foundation. results: fourteen patients received physiotherapy input over the month period. three were excluded. of the included, were transferred from an associated model hospital. cva patients made up % of the physiotherapist’s caseload, but accounted for % of patient treatment time. patients were assessed by the therapist within an average of day of referral. they were treated on average . times per week for . minutes per session. seventy-three percent of treatment sessions required more than one therapist, accounting for . % of the entire caseload. time from referral to initial assessment falls within the recommended – hours window. treatment frequency and duration are and %, respectively, below ihf guidelines. conclusions: best practice guidelines are not being met with regard to treatment frequency and duration. structured communication between associated hospitals may improve this. model hospitals could explore stratification based on the extent of required rehabilitation prior to onward referral. early-supported discharge is another avenue that should be examined to reduce the burden on inpatient rehabilitation services and maximise patient outcome. p an occupational therapy led memory health group for community-dwelling older adults in a community reablement unit: evaluation and vision gillian mchugh, geraldine connolly our lady’s hospice and care services, dublin, ireland background: older adults report memory complaints impacting their daily lives in the absence of objective cognitive impairment. the memory health group was established as part of the occupational therapy programme for clients attending the community reablement unit in . previous research outlined the negative impact of early memory changes on an individual’s participation in social and other activities, along with a negative impact on self-esteem and quality of life (roberts et al. ). the group aims to support older adults in coping with and challenging the impact of early memory changes on ir j med sci ( ) (suppl ):s –s s their daily activities, using a combination of strategies in line with current research evidence (troyer et al. ). methods: both quantitative and qualitative data was used. client evaluation following participation in this group was completed using a self-developed questionnaire to determine the effectiveness of this programme from the client’s perspective. data was collected to ascertain client satisfaction and to inform the future direction of the group. results: motivation to learn techniques to support memory function in daily activities was high at %, with an equal % of partici- pants reporting inclusion of strategies into their daily routines at time of discharge. relaxation based strategies were favoured, along with strategies to overcome functional difficulties in completing daily activities. conclusions: older adults attending the community reablement unit experience early memory difficulties that impact their partici- pation in daily activities. the occupational therapy-led memory health group aims to raise awareness of age-related memory changes and to support the individual to develop strategies to overcome memory difficulties in daily life. client satisfaction with this pro- gramme was high and will inform the future direction of this memory intervention as part of an occupational therapy programme. priority for development includes consideration of a suitable standardised measure to identify participants’ memory challenges and perceived coping. references: . troyer ak, gojmerac m, murphy c, kelly j ( ) facilitating change in health-related behaviors and intentions: a randomized controlled trial of a multidimensional memory program for older adults. aging & mental health, sep; ( ): – . . roberts, j.l., clare, l., and woods, r.t. ( ). ‘subjective memory complaints and awareness of memory functioning in mild cognitive impairment: a systematic review’. dementia and geriatric cognitive disorders. , – . p improving the management of gentamicin in older patients in an acute hospital setting carmel mckenna, rosemary curran, john fitzsimons, michaela pentony, linda rickard, eithne dunnill, martin mulroy, elaine conyard our lady of lourdes hospital, drogheda, co. louth, ireland background: gentamicin is an effective antimicrobial for the treat- ment of severe infection. however it is associated with nephrotoxicity and ototoxicity. the aim of this study was to improve prescribing and therapeutic drug monitoring (tdm) of gentamicin, which is essential for safe management of patients. methods: a prospective study of patients years and older receiving once-daily gentamicin was undertaken over months. quality improvement methodology was followed. a new guideline and electronic dose calculator were initially piloted on two wards and subsequently approved hospital-wide. new renal dosing recommen- dations were introduced. the trough level time window was extended from hours pre-dose to – hours post-dose to increase flexibil- ity. the first trough level was due on day of treatment instead of day to allow early identification of high levels. education sessions were provided to medical and nursing staff. the fisher’s exact test was used for statistical analysis. results: a total of patients were included, before and following the introduction of the new guideline. of these, % had a creatinine clearance of less than ml/minutes when gentamicin was initiated. tdm and management of high trough levels were improved following the introduction of the new guideline: first trough level taken correctly for % of patients compared to % previously (p = . ), all trough levels in range for % of patients compared to % previously (p = . ) and next dose held when trough level high for % of patients compared to % previously (p = . ). the first dose was prescribed according to the guideline for % of patients using the new approach compared to % previously. conclusions: accurate tdm of gentamicin and safe management of high trough levels has improved. further quality improvement ini- tiatives are continuing, particularly with regard to appropriate first dose selection. p development of an orthogeriatric service in an irish tertiary referral hospital sarah mello, josie clare cork university hospital, cork, ireland background: orthogeriatrics is an evolving subspecialty in geriatric medicine. previous studies have demonstrated that joint care between orthopaedic surgeons and an orthogeriatrician improves outcomes for hip fracture patients by identifying and triaging high risk patients, reducing postoperative complications and shortening lengths of stay. our aim was to identify areas of patient care that may be improved after introduction of joint care with an orthogeriatrician. methods: we distributed a short questionnaire to orthopaedic con- sultants and nchds consisting of questions examining their adherence to the quality standard of care for hip fractures in the elderly as outlined by nice guidelines. results: orthopaedic doctors were surveyed, returned the questionnaire ( consultants, registrars and shos). only one respondent reported previous experience in geriatric medicine. six respondents ( %) indicated that they assess for bone health, seven ( %) institute early discharge planning and eight ( %) document do not resuscitate orders when appropriate. less than half of respondents routinely carry out cognitive assessments or medication review and only one doctor reported undertaking a falls assessment. half of respondents state that they are not confident in diagnosing and treating delirium and only somewhat confident in dealing with end of life issues and pain control in older adults. % of orthopaedic doctors feel that older patients are more challenging to treat than younger patients and believe that joint care with an orthogeriatrician will positively affect patient outcomes. conclusions: this survey highlights a skills gap, which can be suitably filled by an orthogeriatrician in order to improve patient outcomes particularly preoperative assessment, preventing postoper- ative cognitive and physical decline and discharge planning. we have found a clear role for an orthogeriatric service and the orthopaedic surgeons are universally welcoming joint care. s ir j med sci ( ) (suppl ):s –s p clinical audit of bone health in hiv positive patients over years of age elizabeth moloney, aoife cotter, mary horgan, arthur jackson, gabriella rizzo cork university hospital, cork, ireland background: low bone mineral density is common in subjects with hiv-infection; the clinical consequence is fracture. those over the age of should be screened for risk factors associated with low bmd and falls. the aims of the audit were to determine if subjects over in the ambulatory hiv outpatient setting were being screened for risk factors associated with poor bone health (low bmd, calcium and vitamin d deficiency and falls). the national prescribing service clinical audit of osteoporotic fractures and falls was used as our audit standard. methods: case note review of ambulatory hiv outpatient atten- dances over month. those over the age of were retrospectively selected. results: seventeen patients over age were screened. ( . %) aged – . ( . %) aged – . male ( . %) risk factor assessment ( . %) modifiable risk factor dietary calcium intake absolute risk factor assessment falls risk assessment and management on drug therapy ( . % audit limitations were based on clear documentation. assessments may have been performed but not documented. conclusions: hiv patients over years of age are a risk group for low bone mineral density and fractures. bone health assessments should form part of routine clinical review among these subjects. the majority of patients – years in this audit were not screened routinely in the outpatient setting. recommendations for improved bone health surveillance are: . assess absolute fracture risk using a calculator . assess modifiable risk factors . assess for vitamin d deficiency risk factors . assess for dietary calcium intake . assess falls risk re-audit planned from may . p the factors associated with the use of assistive technology among community dwelling individuals diagnosed with multiple sclerosis lorraine morrin, manigandan chockalingam national university of ireland, galway, ireland background: the aim of this research study is to investigate the factors associated with the use of assistive technology (at) in persons with multiple sclerosis (ms). ms is a progressive neurodegenerative disease, resulting in an array of functional limitations. at is pre- scribed as a means to circumvent barriers associated with disability. the abandonment of at affirms the continuation of client’s needs. abandonment of at warrants the need to examine the factors asso- ciated with the ms populations’ use/abandonment of devices. methods: a cross-sectional national on-line survey design was uti- lised. the survey comprised of a researcher-developed questionnaire and three standardised assessments: the hospital anxiety and depression scale (zigmond and snaith ), the psychosocial impact of assistive devices (day and jutai ) and the barthel index (mahoney and barthel ). participants were recruited using a census method of sampling, whereby all registered members of a ms organisation were invited to participate. factors were analysed using spearman’s rank order correlation coefficient and cramer’s v to explore their relationship with the use/abandonment of at. results: twenty-seven participants with the mean age of . years were included in the study. mobility at, home modification and bathing at are the most commonly used at by ms. being married, competent and being adaptable for at use were found to be signifi- cantly associated with the use of at. participants’ current status of psychological wellbeing, anxiety in particular demonstrated a sig- nificant inverse relationship to the use of at. perceived unsuitability of at device has found to be the most significant reason for at abandonment. conclusions: consideration of client’s views regarding at are nec- essary to ensure provision of an effective intervention. several factors influence device use within the ms population, encouraging the need development of provisional guidelines to augment provision of at procedure and for further research within this area. p occupational therapy effectively providing holistic care in a frail elderly active rehabilitation unit (aru) catherine mulvihill, emma nolan, alison sweeney, siobhan marshall, anna szarata, fiona armstrong cappagh national orthopaedic hospital, dublin, ireland background: occupational therapists perceive the patient as a whole person whose overall state of health is a result of a complex inter- action of factors including physical, mental, sociocultural and spiritual components (canadian association of occupational thera- pists ). the world federation of occupational therapists (wfot ) notes that ‘‘interventions from occupational therapists are person centred and environmental, designed to facilitate the per- formance of everyday tasks and adaption of settings in which the person works, lives and socialises’’. it is therefore appropriate that the occupational therapist assess level of function, cognition, home environment, and social interaction ability when planning and delivering intervention. the aim of the active rehabilitation unit is to provide rehabilitation with the goal of returning safely home. methods: a sample of case studies explores and demonstrates how the occupational therapy department delivers holistic care in aru. interventions delivered include rehabilitation in activities of daily living, falls prevention education, home assessment and social interaction. the following outcome measures functional indepen- dence measure (fim), mini mental state examination (mmse), falls efficacy scale international (fes-i) & home falls and accidents screening tool (homefast) along with qualitative comments from a range of social groups were analysed to provide evidence of a holistic approach and the effectiveness of occupational therapy in the aru. results: quantitative results reveal the effectiveness of occupational therapy within the aru while the qualitative results gathered show the depth of meaning of holistic care. ir j med sci ( ) (suppl ):s –s s conclusions: this study supports the importance of providing a holistic approach to occupational therapy practice in rehabilitation and shows that occupational therapists are best placed to provide holistic care to patients. references: . canadian association of occupational therapists ( ) occu- pational therapy guidelines for client centred practice. . world federation of occupational therapists (wfot) ( ) statement on occupational therapy. p a study of the inter-rater reliability, feasibility and validity of the cognitive vital sign (cvs) screening tool padraic nicholas , william molloy , yang gao , rónán o’ caoimh university college cork, cork, ireland; st. finbarr’s hospital, cork, ireland; mercy university hospital, cork, ireland background: in hospital, patients’ vital signs such as pulse, blood pressure, oxygen saturation, respiratory rate and temperature are routinely recorded. currently, short, valid and reliable cognitive tests are not routinely used to monitor cognitive function [ ]. patients experience fluctuations and changes in cognition, ranging from normal daily variations, to those that result from an under- lying organic process such as delirium. changes in cognition are a ‘‘vital sign’’ and often the earliest indicator of a variation or change in the patient’s condition [ ]. this study aimed to evaluate a brief ‘‘cognitive vital sign’’ (cvs) screening test, to enable monitoring of cognitive function and register early changes in cognition. methods: two investigators performed twice-daily cognitive assessments on clinically stable adults, over – consecutive days, using the cvs and a battery of short cognitive tests. a questionnaire was completed by nursing staff to evaluate the time needed to administer the test, comprehension of the standardised instructions, feasibility to perform on the ward, and their willingness to perform the cvs routinely. results: correlation coefficients for the cvs were excellent ( . – . ). a diurnal fluctuation in score of \ . (total score = ) was deemed acceptable in clinically stable patients. larger fluctua- tions are accepted as normal in patients with higher baseline scores on cognitive testing. cvs scores were statistically the same (p = . ) with repeated testing i.e. no learning effect was shown. % of cvs examiners/nursing staff believed the cvs would be feasible to per- form routinely. conclusions: there is no evidence to suggest a suitable screen has yet been designed or validated to satisfy all requirements for a rapid cognitive screen i.e. tests most cognitive domains, less than minutes to administer, is validated against clinical diagnosis/gold standard, has multiple formats, and is reliable and acceptable to the investi- gator. this study’s findings suggest the cvs may satisfy these objectives. references: . brodaty h, moore cm ( ) the clock drawing test for dementia of the alzheimer’s type: a comparison of three scoring methods in a memory disorders clinic. int j geriatr psychiatry : – . bush c, kozak j, elmslie t ( ) screening for cognitive impairment in the elderly. can fam physician : – p the introduction of an interdisciplinary quality improvement forum within a new gerontological rehabilitation unit joanne larkin, emma nolan, mary nolan, kate o’mahony cappagh national orthopaedic hospital, dublin, ireland background: an active rehabilitation unit (aru) was established in , guided by the specialist geriatric services model of care introduced through the national clinical programme for older people . to ensure quality-care, an interdisciplinary quality improve- ment forum (qif) was developed. this interdisciplinary approach was essential as co-ordinated teams with a clear purpose, protocols and good communication are more effective in ensuring delivery of optimal care. we aim to describe the introduction and audit of the quality improvement projects (qips) generated through the work of the qif. methods: the hse change model was used to guide development of the qif. this model describes the four phases of change: initiation, planning, implementation and mainstreaming. results: initiation involved identifying the need and preparing for change. the interdisciplinary team developed a qif entitled ‘‘the aru working group’’. within the planning stage, terms of reference were agreed and idea-generating meetings conducted. project themes were agreed including communication, education, client-centred care and quality-control, and qip’s established. each qip detailed objectives, responsible personnel, timescales, training required and outcome measures. within the implementation phase, a range of projects were conducted. these included development of client information leaflets, a volunteer programme, sub-groups focused on management of risk factors such as falls, and interdisciplinary goal-setting, in-service and rehabilita- tion training initiatives, among others. for mainstreaming, change was monitored, evaluated and adjusted further when required. positive change was consolidated in daily practice, and efforts to sustain this are ongoing. conclusion: this is an account of the work of a qif within a newly- established gerontological rehabilitation unit, guided by the hse change model. results reflect the qip’s implemented, resulting changes and service impact. most qip’s were effective, induced positive change and were sustainable in daily practice. references: . health service executive ( ). improving our services:a guide to managing change in the hse. retrieved: / / . www. hse.ie/…/improving_our_services,_a_guide_to_managing_change_in_ the_the_hse_-_oct_ .pdf p three year audit of prevalence and management of atrial fibrillation post-stroke in an acute hospital imelda noone, serena hatton, graham hughes, diarmuid o’shea, morgan crowe st. vincent’s university hospital, dublin, ireland background: atrial fibrillation (af) is a common cardiac arrhythmia and a well-established risk factor for stroke with its prevalence increasing with advancing age. the risk of stroke associated with af is reduced by up to % by anticoagulation (ac); however, despite evidence of substantial benefit, underutilization of ac remains s ir j med sci ( ) (suppl ):s –s http://www.hse.ie/%e % %a /improving_our_services% c_a_guide_to_managing_change_in_the_the_hse_-_oct_ .pdf http://www.hse.ie/%e % %a /improving_our_services% c_a_guide_to_managing_change_in_the_the_hse_-_oct_ .pdf http://www.hse.ie/%e % %a /improving_our_services% c_a_guide_to_managing_change_in_the_the_hse_-_oct_ .pdf common. in the north dublin stroke study (ndpss) only % of patients with a prior known af were on ac at the time of their stroke ( ). methods: data was analysed retrospectively on , acute strokes presenting to our teaching hospital over a year period using our minimum data set. variables included demographic details, type of stroke, length of stay and outcome. results: of , acute strokes in , and , ( %) had af ( % existing, % new), % were female and the majority ( %) were [ years. of the ( %) patients in af, were unsuitable for ac ( died, haemorrhagic strokes, large gastro-intestinal bleeds) leaving potential candidates for ac. overall ( %) patients were anticoagulated on discharge. indi- cations for not anticoagulating included palliative care, patient refusal, discharge to another institution prior to commencement and frailty. conclusion: our audit reveals a high proportion ( %) of stroke survivors with af who are discharged on either warfarin or newer oral ac ( %). this was facilitated through a more accurate assessment and discussion of the risks and benefits of act helping to optimize safe therapeutic dosing and compliance. reference: . hannon n, sheehan o, kelly l, et al ( ) stroke associated with atrial fibrillation–incidence and early outcomes in the north dublin population stroke study. cerebrovasc dis ( ): – . p cerebral small vessel disease (csvd) in very old patients morgan crowe , michael farrell , niamh nolan st. vincent’s university hospital, dublin, ireland; st. columcille’s hospital, dublin, ireland background: cerebral small vessel disease (csdv) is a sporadic process affecting small cerebral arterioles, capillaries and sometime venules with development of parenchymal lesions including lacunar infarcts, white matter rarefaction, large haemorrhages and micro- bleeds. despite its prevalence, the neuropathology of csvd has received little attention in very old patients. in this retrospective clinicopathologic review, we describe some of the changes of csvd in consecutive patients (aged – ; female, male) who had a post-mortem brain examination in in one dgh. case records were reviewed for results of brain imaging and clinical features. methods: microvascular alterations were sought in superficial lobar vessels and in deep central grey matter vessels. sections were immunostained for smooth muscle specific actin as a marker of smooth muscle injury, beta a amyloid and perl’s stain was used to demonstrate perivascular iron. additionally vascular hypercurvature, perivascular space widening (pvsw) and charcot bouchard aneu- rysms (cba) were sought. using the sclerotic index (si) ( ), csvd was recorded as mild (si . – . ), moderate (si . – . ) or severe (si [ . ) results: vascular amyloid was present in cases (superficial in one and both superficial and deep in another). pvsw was present in the deep vessels of / cases and was both superficial and deep in one case. three of the cases with pvsw in the deep vessels exhibited abnormal perivascular iron deposition. all cases showed hypercurvature of the deep grey vessels with one showing hypercurvature of the superficial vessels. there was one deep cba. the mean si was . (range . – . ) in the deep vessels and . ( . – . ) in the superficial vessels. ct brain scan showed changes in the deep white matter and periventricular or basal ganglia consistent with csvd in / cases. conclusion: whilst changes of csvd were present in all our patients, none had severe lumenal narrowing in the deep vessels suggesting that parenchymal brain damage in the deep white and grey matter visible on brain imaging may be due to mechanisms other than narrowed small vessels. p taking the service to the community- geriatrician-primary care liaison service ontefetse ntlholang , eoin o’donoghue , fergus o’kelly , kevin o’doherty , siobhan o’kelly , david james robinson st. james’s hospital, dublin, ireland; coombe family practice, dolphin’s barn street, dublin, ireland; rialto medical centre, south circular road, dublin, ireland background: the number of older people in europe is expected to increase and this calls for innovative ways of promoting and ensuring equity of access to services to those who need them. geriatricians are equipped to deal with all geriatric syndromes whilst general practi- tioners in the community have reservations dealing with the same. one of the strengths of geriatric medicine is comprehensive geriatric assessment (cga) which encompasses multidisciplinary care and is delivered in secondary or tertiary setting. the use of screening tools in community settings may be helpful in identifying a subgroup that would benefit from earlier cga. we developed a geriatrician-pri- mary care liaison service to provide a specialist service in the community. methods: patients aged c years who needed geriatric specialist input were identified in primary care practices. the geriatrician visited monthly—physical and cognitive examinations were carried out as indicated, recommendations were recorded using the practice computer system. results: patients were assessed in visits. there were new diagnoses in ( . %) of patients. new diagnoses were n (%): dementia ( %), mild cognitive impairment ( %), mood disorders ( %), vascular gait dyspraxia ( %) among others. recommendations or interventions were made n (%): medications added ( %), medication doses changed ( %), medications stopped ( %), day hospital referral ( %), radiological inves- tigations ( %), blood tests ( %), generic advice ( %), specialist referral ( %), endoscopy ( %) and others ( %). conclusion: a high proportion of patients referred had cognition disorders ( . %) and needed either medications added, stopped or dose changed ( . %) and day hospital referral ( %). p cough ‘til you drop helen o’brien, blaithin ni bhuachalla, celia o’hare, jaspreet bhangu, ciara rice, lisa byrne, patricia hall, rose anne kenny trinity college dublin, dublin, ireland background: situational syncope is classified as reflex syncope and occurs in specific circumstances such as coughing ( ). loss of con- sciousness associated with coughing was first described in by charcot as ‘‘laryngeal vertigo’’ ( ) but is now most commonly called cough syncope. case study: a -year old gentleman was referred following mul- tiple syncopal episodes after coughing. his background history ir j med sci ( ) (suppl ):s –s s included coad, type diabetes, hypertension, diverticular disease and peptic ulcer disease. he had polypharmacy with relevant med- ications including an arb, a calcium channel blocker, an alpha blocker, diuretics, and an ssri. further questioning revealed that he had daytime somnolence, was a heavy snorer and continued to smoke. his body mass index was (class ii obesity). examination was consistent with chronic obstructive airways disease. assessment included an ecg, active stand, head up tilt including valsalva and cough reproduction while upright at the end, and carotid sinus massage. anti-hypertensives were rationalized at first review. sleep studies were arranged and in view of his cardiac risk profile, a cardiac work up was undertaken. he was advised not to drive until investi- gations were complete and the potential underlying respiratory condition appropriately managed. pulse oximetry was strongly sug- gestive of obstructive sleep apnoea and overnight cpap was commenced immediately. an external loop recorder showed ven- tricular standstill and mobitz type ii, second degree av block which co-incided with pre-syncope, giving symptom-rhythm correlation. he was admitted for pacemaker insertion and angiography. conclusion: this case provided evidence of dual diagnosis: cough syncope (situational syncope) classified as reflex syncope, and cardiac syncope. through experience in our specialist syncope unit, a common phenotype is emerging of a predominantly male, overweight, middle-aged, smoker with coad and occasionally osa. future clinical research in the field of cough syncope is required with a col- laborative approach from syncope experts and respiratory physicians. references: . moya a, sutton r, ammirati f, blanc jj, brignole m, dahm jb et al ( ) guidelines for the diagnosis and management of syncope (version ). european heart journal ( ): – . charcot jm. séance du novembre . gaz med paris. ; : – . p a retrospective review of the ot (occupational therapy) off road driving assessment pathway in a day hospital setting louise o’ callaghan , diarmuid o’shea st vincent’s university hospital, dublin, ireland; carew house day hospital, st. vincent’s university hospital, dublin, ireland background: a retrospective review of an ot (occupational ther- apy) off road driving assessment pathway in a day hospital setting. driving is and will remain the primary mode of transport for older adults. methods: this review was completed over a month period. an off road ot driving assessment was completed and included cognitive assessment, driving history (self rating/proxy scales), visual-perceptual assessment, physical and functional assessment. these included a referral for an on road driving assessment and a letter to the referring consultant for their medical evaluation. the battery of assessments used was: ace- , rookwood driving bat- tery, a delaide self and by proxy efficacy scale. ot would send referral for on road assessment. data collected over a month period. a dementia/mild/moderate cognitive impairment diagnosis required. results: patients within this review, with aim for an additional months prospectively patients failed / + sections of the rook- wood, suggesting difficulties with driving and a required on road assessment. / passed their on road driving assessment. any score greater than / is considered a fail and corresponds to a % chance of failing an on- road assessment. however the participants scoring + on the rookwood, / passed their on-road assessment. the ace- scores ranged from / to / with no significant association with the rookwood scores. conclusion: to increase the awareness of the ot role in driving and the predictive value of off road driving assessments in regards to pass/ fail rates of on road assessments. the aim of same is to assist the medical decision within the dementia/mci population. exploration required for the validity of more standardised tools to assist predict a pass/fail rate for the on road assessment (e.g. amps- assessment of motor and process skills). a plan-do-check-act model of quality is continuing to guide this quality initiative as a quality improvement cycle. p outcomes of a multi-disciplinary rehabilitation consultation team elaine o connor, sarah doyle, sinead coleman, fiona connaughton, conal cunningham st. james’s hospital, dublin, ireland background: a rehabilitation service is provided to both male and female inpatients within the medicine for the elderly service in a dublin hospital. historically, patients referred for a rehabilitation consultation were reviewed by a registrar at ward level who deter- mined the patient’s appropriateness to engage in the rehabilitation process. this was based on information gathered from the allied health professional’s documentation within the medical chart. there was limited liaison between the registrar and the multi-disciplinary team working within the rehabilitation service. in march , a multi-disciplinary rehabilitation consultation team was introduced in order to increase communication, promote team working amongst staff, to be holistic in approach and to improve patient care. methods: the number of admissions, discharges and days taken to transfer to the rehabilitation setting was gathered and analysed from february to february . the data analysed from february to february was prior to the introduction of the multi-disciplinary rehabilitation consultation team with the data gathered from march to february was following the introduction of it. results: the data gathered for the years following the introduction of the team has illustrated that there has been an increase in the number of discharges from the rehabilitation setting as well as a decrease in the number of days taken to transfer a patient to the rehabilitation setting in comparison to the year prior to the teams introduction. conclusion: team working was important to ensure the success of this initiative and through the introduction of the team, it has led to increased patient throughput as well as increased discharges to the home environment from the rehabilitation setting. p outcomes of occupational therapy interventions within a stroke early supported discharge (esd) service; a month retrospective clinical audit laura o’donnell, desmond o’neill, ronán collins, tara coughlan, dominic mccabe, sinead murphy, richard walsh tallaght hospital, dublin, ireland background: stroke esd services aim to facilitate early discharge from acute hospitals by providing acute rehabilitation in patients’ s ir j med sci ( ) (suppl ):s –s homes to reduce length of stay, dependency and increase therapy outcomes ( ). there has been a strong consensus recommending ot membership in esd teams ( ). this month audit reviewed outcomes of ot intervention within a multi-disciplinary stroke esd team. methods: patients were seen within hours of discharge from acute hospital. collaborative patient/therapist goals were set using the canadian occupational performance measure (copm). patients were discharged from ot esd when all goals were achieved. the aus- tralian therapy outcome measures for ot (austoms) and the copm were used to evaluate objective and subjective functional outcomes respectively. data was recorded over the course of the months. results: % of all patients referred required ot input, % of those were over- . on average, patients received ot sessions within a range of – sessions. functional improvements were evident across all age groups. the percentages of patients who improved within each of the austoms domains were; impairment %, activity limitation %, participation %, distress . %. on average, patients improved from moderate to mild disability. within the copm % of patients improved in both performance and satisfaction. conclusions: ot is effective in reducing dependency of stroke sur- vivors in over and under- s alike. within the audit period, average hospital length of stay was reduced by days per patient. there is potential that this model of esd may also be effective with the frail elderly population requiring acute rehabilitation. references: . langhnorne p ( ) for the early supported discharge trialists. services for reducing duration of hospital care for acute stroke patients (review). cochrane database syst rev ( ) . fisher rj et al ( ) a consensus on stroke early supported discharge. stroke : – p bleeding obvious: the hazard of prescribing warfarin to the colour blind tomoaki hayakawa , dearbhail o flynn , sonia ruparell , david gough , ciaran donegan beaumont hospital, dublin, ireland; rcsi, dublin, ireland background: warfarin is the most commonly prescribed anticoag- ulant and dose is distinguished by colour: blue, brown and pink. failure to distinguish colours can lead to significant incorrect dosing with potentially catastrophic outcomes. there are few reports in the literature regarding the relationship between warfarin and colour blindness. we report a case of bilateral subdural hematomas most likely provoked by warfarin overdose in a colour blind man. case report: a -year old man presented to casualty with hema- temesis. noted to be taking warfarin for atrial fibrillation and a mitral valve replacement; inr on admission was . , which was reversed. endoscopy revealed an oesophageal ulcer. within hours of admission, the patient became confused with a gcs of . no history of falls or head injury. ct brain reported bilateral subdural hema- tomas necessitating neurosurgical intervention. during admission the patient’s spouse reported her husband was colour blind. there was one incident years ago when the patient took the wrong dosage of warfarin. his inr was . . she says he was not confused or ill at that time but his colour blindness led him to choose the wrong tablets. the patient himself occasionally requested his wife to check if he was selecting the correct tablets. when he had recuperated enough we challenged this theory by instructing him to pick a dose of warfarin by colour. he failed repeatedly and was unable to distinguish the tablets by colour. following rehabilitation he was discharged home with low molecular weight heparin injections. conclusion: this case highlights the potential of colour blindness to precipitate incorrect warfarin dosing. colour blindness is not routinely screened when we decide to commence warfarin therapy. colour blindness is common: affecting % of men. we recommend screening for colour blindness in the warfarin population and strategizing a safe prescribing method such as using only brown tablets ( mg). p the use of antipsychotics for dementia in acute hospitals paul gallagher , sean kennelly , anna de siun , emma o’ shea , desmond o’ neill , suzanne timmons university college cork, cork, ireland; trinity college dublin, dublin, ireland background: despite guidelines that antipsychotics should be pre- scribed in dementia only when a person is severely distressed, or is at risk of harming themselves or others, prescription is still common place. this study aimed to evaluate the use of antipsychotics for people with dementia during acute hospital admission. methods: as part of a larger audit on dementia care in acute hos- pitals, healthcare records from patients with dementia in acute public hospitals in ireland were reviewed, to explore prescription of antipsychotics. included patients had a recorded hospital in-patient enquiry diagnosis (primary or other) of dementia, and a length of stay greater than days. all auditors received comprehensive training. results: overall, % of patients with dementia were administered antipsychotic medication during their admission. of those with an existing prescription ( %), over half were discharged without a change to their prescription; while % of patients with no pre- scription on admission were discharged with a new regular prescription. a reason for prescription was given in only % of cases, most commonly ‘agitation’ ( %), delirium ( %), aggressive behaviour ( %), and disturbance through wandering ( %). of con- cern, many patients ( %) administered new antipsychotics were not assessed for behavioural and psychological symptoms of dementia (bpsd), delirium ( %), mental status ( %), or pain ( %). a collateral history was not taken in % of people prescribed new antipsychotics. conclusion: the results of this study suggest that high rates of antipsychotic medication are being prescribed to people with dementia in acute hospitals, including new prescriptions. key multi- disciplinary assessments are often not carried out to determine the appropriateness of existing or new prescriptions or suggest alterna- tives to antipsychotic medication. p one year outcomes in stroke patients treated with iv thrombolysis fiona o’sullivan, nurasyikin kamaruddin, nora cunningham, peter boers, john mcmanus, catherine peters, margaret o’connor, declan lyons ir j med sci ( ) (suppl ):s –s s university hospital limerick, limerick, ireland background: treatment of acute ischaemic stroke with rt-pa within . hours has been associated with a significant increase in survival free of disability, despite an early % excess of fatal intracranial haemorrhage. ( ) the aim of this study was to assess long-term outcome after thrombolysis in stroke patients, following formalisation of acute stroke services locally. methods: this observational study is based on university hospital data collected as part of the hipe esri national stroke database. a structured telephone interview was used to ascertain information about medium to long-term outcome (from to months after ivt). primary outcomes were death and excellent outcome (modified rankin scale, mrs scores and ). results: intravenous thrombolysis (ivt) treated stroke patients were included for analysis (all those treated from june to may ). median time of follow-up was months (interquartile range – ). / could not be contacted on two separate occasions. at the time of interview (n = ), / patients had an excellent outcome and / had an unfavourable outcome, which included patients with mrs scores – and patients were dead. median time to death was . days post treatment with only one death occurring later than days at months post treatment. of those that are known to have survived long-term, % patients were living in their own home ( / ). of those that are known, % required modified diet ( / ), % has speech deficit ( / ) and % has cognitive impairment ( / ). conclusion: at year post follow up, approximately in had an excellent outcome (mrankin or ) which is comparable to similar larger studies. % of survivors reside in their own home, regardless of disability. p polypharmacy and proton pump inhibitor prescribing in older patients stephen tobin , stephen power , rónán o’caoimh , mike o’connor the university of aberdeen medical school, aberdeen, scotland, uk; cork university hospital, cork city, ireland background: polypharmacy increases with age, potentially leading to avoidable harm. there are safety concerns about inappropriate prescribing of proton pump inhibitors (ppis) in older patients. long- term ppi therapy, particularly at high doses, is associated with an increased risk of clostridium difficile–associated diarrhoea and hip fracture in older adults. admission to hospital is an ideal opportunity to review ppi prescriptions. methods: review of drug charts for consecutive geriatric inpa- tients. all patients prescribed a ppi had their medical notes reviewed for a documented indication for use. a departmental presentation was undertaken to draw attention to the licenced indications and dosages for which ppi’s can be prescribed. a re-audit of practice was carried out months later (n = ). results: no significant difference existed in age, gender or number of medications prescribed for both arms of the audit. there was no significant association between polypharmacy and being prescribed a ppi for either arm of the audit, p = . . a similar percentage of patients had their prescription of ppi continued on admission to hospital, before and after the educational intervention; % ( / ) and % ( / ) respectively, p = . no valid indication was found in % ( / ) vs. % ( / ) of cases following the intervention, p = . . in all, % ( / ) of prescriptions were at the higher healing dose of the drug vs. % ( / ) following the intervention, p = . . conclusions: ppis were commonly prescribed among older people admitted to hospital, usually at high doses. the majority had no valid indication documented in their medical records, suggesting that ppis might be over-prescribed in the elderly population. the audit suggests that simple educational interventions in a hospital setting have little effect on prescribing practice. an increased input from pharmacy on the ward regarding prescribing practices and future e-prescribing with alerts may improve current practice. however, financial constraints may limit their viability to become widespread alternatives. p audit of drug kardex’s in older patients laurna mcgovern, mu’adz mohd zubir, rónán o’caoimh, paul gallagher cork university hospital, cork city, ireland background: the prescribing of medicines is the commonest healthcare intervention in developed countries. in irish hospitals a mean of medications are prescribed per patient on the wards, which translates to , medications being administered daily. regular audits of medication prescribing are important as it allows healthcare practitioners to identify areas of practice that require improvement. methods: an audit of the drug kardex’s in the geriatric medicine ward of cork university hospital was conducted on / / . the audit was unheralded, as staff were not warned about the audit in advance. in total drug kardex’s were included. the standards used were patient details, weight, precaution stickers, prescriber bleep & mcrn, generic prescribing, legibility, signing outside boxes and duration of antibiotic treatment. a departmental presentation was undertaken to educate staff on the standard of prescribing expected on initiation to the ward. a re-audit of practice was carried out on the / / . results: on initial audit and re-audit, % ( / ) of drug kar- dex’s contained patient details. prescriber bleep and mcrn were present in % ( / ) and % ( / ) of kardex’s on initial audit. on re-audit, this increased to . and . % respectively. generic prescribing was present at a rate of % initially, increasing to . % following intervention. correct antibiotic prescribing, including duration of treatment, was evident in % ( / ) of drug kardex’s, decreasing to . % ( / ) on re-audit. patients’ weight was recorded in . % of kardex’s. following intervention, this decreased to . % ( / ). conclusions: this audit suggests that simple educational interven- tions in a hospital setting improve prescriber identification compliance rates and prevalence of generic prescribing. it also sug- gests that further multidisciplinary education is needed to increase the recording of patients’ weight and to improve the prescribing of antibiotics. p the use of ct perfusion in the assessment of older adults presenting with acute ischaemic stroke rónán o’caoimh, amanda lavan, patrick nicholson, glen arrigan, mary buckley, norma harnedy, denis o’mahony, padrigin o’sullivan, mike o’connor, paul gallagher s ir j med sci ( ) (suppl ):s –s cork university hospital, cork city, ireland background: ct perfusion (ctp) is a new imaging modality, used to assess the ischaemic core and penumbra. it is increasingly being used to investigate if there is salvageable brain tissue when patients present towards the limit of the thrombolysis window or in those with ‘‘wake up’’ but presumed recent stroke. it is not known whether ctp pro- vides additional diagnostic information compared with clinical indicators alone, in the assessment of older adults presenting with acute ischaemic stroke. methods: we performed a retrospective review of consecutive patients aged over years, assessed with ctp for suspected acute ischaemic stroke, presenting to a university hospital between sep- tember and february . where available, the nihss and aspects at presentation, and baseline and discharge modified rankin (mrs) scores were recorded. results: in all, patients were available. of these, had evidence of acute stroke, two probable tias, one possible seizure. the median age of patients with stroke was years (interquartile range – = ± ). median aspects was ( – . = ± . ), med- ian nihss score ( – = ± ) and median baseline mrs score was / , ( . – = ± . ). indications for ctp included assessment for further intervention % ( / ), wake-up stroke % ( / ), failed intravenous thrombolysis % ( / ) and contraindications to intravenous thrombolysis % ( / ). of all those scanned, % ( / ) showed a matched defect, % ( / ) no perfusion defect, while % ( / ) showed a mismatch. in total, % ( / ) pro- ceeded to intra-arterial thrombolysis or thrombectomy. ctp alone had reasonable accuracy, (auc . ), predicting need for further man- agement compared with the nihss (auc . ), mrs (auc . ), or aspects (auc . ). median mrs score on discharge was / , ( – = ± ). % ( / ) were discharged home, % ( / ) institutionalized and % ( / ) died (two who underwent intra- arterial thrombolysis or thrombectomy). conclusion: ctp (mismatch) added to the management of a large percentage of those scanned. ctp alone predicted the need to pro- gress to intra-aterial thrombolysis or thrombectomy comparing favourably with radiological or clinical indicators. p comparing subjective and objective measures of frailty using the deficit accumulation approach olga theou , matthew o’connell , bellinda king-kallimanis , aisling o’halloran , kenneth rockwood , rose anne kenny dalhousie university, halifax, ns, canada; trinity college dublin, dublin, ireland background: frailty is the state of increased vulnerability to adverse health outcomes. a common operational definition of frailty is the frailty index, frequently constructed using mostly subjective health measures. this study examined whether the characteristics of the frailty index differ when constructed exclusively using self-reported or test-based health measures. methods: a secondary analysis of the first and second waves of the irish longitudinal study on ageing (tilda) was performed. , participants aged + years (mean age ± . ; . % women) who underwent a comprehensive health assessment were included. three frailty indices were constructed using the deficit accumulation approach: self-reported health measures (srfi), test-based health measures (tbfi), and all measures combined (cfi). the outcomes measures examined were all-cause mortality, disability, hospitalization, and falls. results: srfi mean scores ( . ± . ) were lower than tbfi ( . ± . ) and cfi ( . ± . ). all three indices had a right- skewed distribution, an upper limit lower than . , an increasing nonlinear relationship with age of . – . % per year, and a dose– response relationship with adverse outcomes. men ( . ± . ) had slightly higher tbfi scores than women ( . ± . ) in contrast to previous studies showing that females have higher frailty scores than males but longer life expectancy. cfi was the strongest predictor of adverse health outcomes, whilst the srfi was more predictive than tbfi for all outcomes except mortality. conclusions: this study showed that the characteristics of frailty are similar regardless of the type of measures used to construct a frailty index, except for the male–female differences. the slightly higher tbfi scores seen in men are consistent with the well-established gender difference in mortality. this suggests that the tbfi may more accurately capture levels of frailty. more generally self-reported and test-based measures appear to capture different aspects of vulnera- bility and should be combined to maximize the predictive ability of frailty indices. p classifying age-related health deficits: a latent class analysis matthew o’connell, rose anne kenny, bellinda king-kallimanis trinity college, dublin, dublin, ireland background: it is hypothesised that the progression of frailty with ageing reflects the accumulation of multi-domain functional deficits and subsequent depletion of individual reserves. understanding this process presents a statistical challenge. latent class analysis (lca) provides a probabilistic framework to incorporate large numbers of health variables and explore underlying groups. this study aimed to apply lca to an age-related health deficit index. methods: data are from , men and women aged c years included in wave of the irish longitudinal study on ageing, a nationally representative longitudinal study of the over- s in ireland. a -item deficit index was constructed including self-reported dis- abilities, chronic conditions, mental health and sensory deficits. lca was used to identify underlying classes analogous to frailty categories and assess the probability of experiencing each deficit according to class membership. results: three latent classes fit the data best, and these three classes were comparable to non-frail, intermediate-frail and frail, reflecting low ( % of sample), intermediate ( . %) and high ( . %) probability of having deficits. the probability of having each deficit varied widely within classes, partly reflecting overall prevalence. the probability of having certain deficits differed greatly across classes, while for other deficits was more similar in each group. for example the probability of having difficulties kneeling was . in the low group, . in the intermediate group and . in the high group, while the probability of having difficulties jogging a mile was . in the low group, . in the intermediate group and . in the high group. conclusions: applying lca to a health deficit index it was possible to identify underlying categories corresponding broadly to the general level of probability of experiencing deficits. variations in the prob- ability of different deficits across classes suggest some deficits may better discriminate levels of overall frailty than others. ir j med sci ( ) (suppl ):s –s s p anticholinergic burden in older adults with intellectual disability; relationships with multimorbidity and adverse effects maire o’dwyer , anne belton , jure peklar , ian maidment , philip mccallion , mary mccarron , martin henman trinity college dublin, dublin, ireland; trinity college dublin, dublin, ireland; university of ljubljana, ljubljana, slovenia; aston university, aston, uk; university of albany, new york, usa; trinity college dublin, dublin, ireland; trinity college dublin, dublin, ireland background: anticholinergic medications may be associated with adverse clinical outcomes, including acute impairments in cognition and anticholinergic side effects, the risk of adverse outcomes increasing with increasing anticholinergic exposure. older people with intellectual disability may be at increased risk of exposure to anticholinergic medicines due to their higher prevalence of comor- bidities. we sought to determine anticholinergic burden in ageing people with intellectual disability. methods: medication data (self-report/proxy-report) was drawn from wave of the intellectual disability supplement to the irish longi- tudinal study on ageing (ids-tilda), a study on the ageing of nationally representative people with an id c years randomly selected from the national intellectual disability database. each individual’s cumulative exposure to anticholinergic medications was calculated using the anticholinergic cognitive burden scale (acb) amended by a multi-disciplinary group with independent advice to account for the range of medicines in use in this population. results: overall, . % ( ) reported taking medications with pos- sible or definite anticholinergic properties (acb c ), with a mean (±sd) acb score of . (± . ) (maximum ). of those reporting anticholinergic exposure (n = ), . % ( ) reported an acb score of c . antipsychotics accounted for . % of the total cumula- tive acb score followed by anticholinergics ( %) and antidepressants ( . %). the most frequently reported medicine with anticholinergic activity was carbamazepine . % ( ). the most frequently reported medicine with high anticholinergic activity (acb ) was olanzapine . % ( ). there was a significant association between higher anti- cholinergic exposure and multimorbidity, particularly mental health morbidity, and some anticholinergic adverse effects such as constipation and day-time drowsiness but not self-rated health. conclusion: using simple cumulative measures proved an effective means to capture total burden and helped establish that anticholinergic exposure in the study population was high. the finding highlights the need for comprehensive reviews of medications. p invisible policies: a scoping literature review of wheelchair and seating provision for older people in irish nursing home settings eleanor o’gorman, rosemary joan gowran university of limerick, limerick, ireland background: there are , older people living in the private, public and voluntary nursing homes in ireland, with an estimated rise to , requiring long term care by . older adults form the largest group of wheeled mobility devices users, with wheelchairs being the primary means of mobility among % of nursing home residents. wheelchair and seating provision within such settings is complex in nature. appropriately prescribed wheelchairs are essential to meet physiological functioning and personal mobility needs by providing postural support and comfort, enabling active participation, improved quality of life and independence. individualised wheelchair and seating increases health and well-being and significantly reduces the risk of pressure ulcers. this paper presents a scoping literature review which examined a range of evidence influencing wheelchair and seating provision in nursing home settings. methods: a scoping literature review methodological framework developed by arksey and o’malley ( ) was used to guide the research process. results: appropriate wheelchair selection is an important factor for resident’s quality of life and participation in meaningful occupation. policy relating to wheelchair and seating provision in irish nursing home settings appear invisible. evidence suggests lack of awareness among stakeholders as to the importance appropriate provision for postural sup- port and personal mobility, with an absence of guidelines to ensure best practice. there appears to be little or no access to occupational therapy services, the key profession involved in assessment and prescription. conclusion: a piecemeal system exists, with organisational and interactional factors influencing serious inadequacy of wheelchair and seating provision. the potential for a reduction in quality of life and ability to maintain independence is inevitably increased. an urgent review of wheelchair and seating provision policy is called for to ensure older people’s posture and mobility needs are being met within irish nursing homes settings.. reference: . arksey h, o’malley l ( ) scoping studies: towards a methodological framework. int j soc res methodol ( ): – . p frailty as a marker of premature biological ageing: preliminary evidence from the irish longitudinal study of ageing (tilda) and a community-based methadone treatment program aisling o’halloran , juliet bressan , bellinda king-kallimanis , matthew o’connell , alma olohan , eamon keenan , joseph barry , rose anne kenny trinity college, dublin, ireland; hse addiction service, dublin mid-leinster, ireland background: high morbidity, mortality and premature ageing within the heroin using population is well documented. however, the rela- tively increased rate of ageing compared to the general community- living population has not been measured. in this study, frailty was utilised to assess the relative rate at which opiate-dependent popula- tions age more rapidly. methods: data from the first wave of the irish longitudinal study on ageing (tilda) (n = , ; mean age ; % female) and a sample of patients (n = : mean age years; % female) in methadone treatment for heroin addiction at an inner-city dublin clinic, were ana- lysed. all subjects were aged ( – years). the five frailty phenotype criteria (unintentional weight loss, exhaustion, low walking speed, low grip strength, low physical activity) were measured using the same methods in both samples. descriptive statistics were used to compare demographics, frailty criteria, and self-reported health variables. results: frailty (c criteria) was significantly higher in the methadone ( %) compared to the tilda ( . %) sample. pre-frailty ( or criteria) was also significantly higher at vs. %, respectively. despite the older mean age and higher percentage of females in the tilda sample, both of which are associated with frailty, exhaustion, s ir j med sci ( ) (suppl ):s –s weight loss, low walking speed and low activity were -, -, - and -times higher in the methadone sample. low grip strength was at % in both samples. the methadone sample were significantly more likely to be smokers, have poorer cognitive function, be unmarried and live alone but were less likely to have c chronic conditions ( vs. %). finally, all hiv positive patients were categorized as frail or pre-frail. conclusions: these preliminary findings suggest that frailty is a marker of biological ageing and may be used to assess the relative rate of premature ageing and risk of adverse health outcomes in vulnerable populations. p the relationship between frailty and the timed up and go in a post-acute rehabilitation unit mary nolan, kate o’mahony, jill long cappagh national orthopaedic hospital, dublin, ireland background: frailty is highly prevalent in hospitalised older persons and is a predictor of mortality, institutionalisation and poor functional gain. the timed up and go (tug) has been proven to be a useful proxy for frailty ( ). the objectives of this study were to investigate the correlation between clinical frailty scores (cfs) on admission with the change in the tug scores and secondly to correlate the cfs on admission with tug on discharge. method: this was a prospective observational cohort study of post-acute older inpatients. frailty was assessed using the canadian study of health and aging cfs. the tug was measured on admission and discharge. results: the mean (±sd) age was . (± . ) and the majority were female ( . %, n = ). the median (iqr) los was ( . ) days. . % (n = ) discharged home, . % went to long term care (n = ), . % (n = ) to an acute hospital and . % (n = ) deceased. the median (irq) tug score was ( ) on admission and on discharge was ( ) seconds. the median (irq) cfs on admission was ( ) (moderately frail) on discharge was ( ) (mildly frail). there was no association found between cfs on admission and the change in tug scores, however a moderate association was found between cfs on admission and tug score on discharge(r = . , p \ . ). conclusion: cfs on admission gives the clinician an indication of the expected tug outcome measures at discharge following post- acute rehabilitation. further research regarding the validity of the tug as a frailty measure and other frailty measures is required in the older adults undergoing post-acute rehabilitation. references: . savva gm, donoghue oa, horgan f, o’regan c, cronin h, kenny ra ( ) using the timed-up and go to identify frail members of the older population. j gerontol biomed sci med sci ( ): – . p behavioural features of impending delirium niamh o’regan , james fitzgerald , dimitrios adamis , david william molloy , david meagher , suzanne timmons school of medicine, centre for gerontology and rehabilitation, university college cork, cork, ireland; graduate entry medical school, university of limerick, limerick, ireland; sligo mental health services, sligo, ireland background: delirium is highly prevalent and leads to poor out- comes. identifying patients with impending delirium may facilitate proactive interventions and hence improve prognosis. recently, the concept of a delirium prodrome has evolved, however its features have yet to be defined. this study aims to characterise the prodromal behavioural features of delirium in medical inpatients. methods: medical inpatients of c years were assessed within hours of admission for delirium using the delirium rating scale- revised’ (drs-r ). consenting subjects without prevalent delir- ium on admission were then assessed daily for incident delirium. evidence of potential prodromal features was also sought by consulta- tion with relevant nursing staff using a novel prodromal checklist, based on features suggested from existing studies. a preliminary analysis was performed on a subset of patients who developed delirium on day of admission compared to controls. frequencies of individual behavioural features on day were calculated and fisher’s exact test was used to ascertain significant differences between the groups. results: of patients included overall, were included in this analysis ( cases, controls). features which were significantly more common in pre-delirious patients were ‘distractibility/going off-track’ ( . vs. . %, p = . ), and ‘increased confusion/fogginess’ ( . vs. . %, p = . ). additional features more common in pre-deliri- ous patients without reaching statistical significance were ‘calling for attention’ ( vs. . %, p = . ), ‘slower movements’ ( . vs. . %, p = . ), ‘rambling off the point’ ( . % vs. . , p = . ) and ‘lacking in spontaneous speech’ ( . % vs. . %, p = . ). conclusions: this is the first study designed specifically to charac- terise the delirium prodrome. preliminary data suggests that some behavioural features, particularly distractibility and mild confusion, occur more frequently in patients with impending delirium. given that inattention is a cardinal feature of delirium, it is unsurprising that it may also be present in the prodromal phase. p scoring frailty in acute medical patients niamh o’regan , james fitzgerald , elvira kuhn , niamh o’donoghue , claire o’dowling , david william molloy , david meagher , suzanne timmons school of medicine, centre for gerontology and rehabilitation, university college cork, cork, ireland; graduate entry medical school, university of limerick, limerick, ireland; cork university hospital, cork, ireland background: frailty may be a key prognostic marker in older acutely unwell adults. multiple frailty scales exist, but most have been developed for use in the out-patient setting. this study aims to assess the agreement between three frailty scores in older medical inpatients. methods: medical inpatients were assessed using share-fi (survey of health, ageing and retirement in europe-frailty index); study of osteoporotic fractures (sof) index; and the reported edmunton frail score (refs). the latter is based on the edmunton frail score, modified to allow for acute illness in the hospital setting. it is multi- dimensional and based primarily on patient self-reports. sof includes questions relating to weight loss and exhaustion, and a measure of muscle strength. share-fi measures exhaustion, appetite, slowness, low activity and grip strength. results: of patients assessed, ( . %) were classified as frail by all three tests, whereas only three patients were categorised con- sistently as non-frail and two as pre-frail. sof categorised the highest proportion of frail patients (n = , . %), whereas share-fi classified ( . %) and refs classified ( %) patients as frail, respectively. refs categorised the highest proportion of patients as non-frail, at . % (n = ). contrastingly, sof cate- gorised only five patients ( . %), and share-fi classified seven ( . %), as non-frail. numbers of pre-frail patients were least con- sistent across the groups. share-fi categorised patients as pre- ir j med sci ( ) (suppl ):s –s s frail, of whom ( . %) and ( . %) were considered frail by sof and refs respectively. conclusion: frailty categorisation differs depending on the scale used. however, almost half of patients were considered frail by all three tests. sof has the fewest parameters, which may account for its frequent categorisation of a patient as frail. refs classified the highest proportion of patients as non-frail. as it is a self-reported scale, this is possibly due to under-reporting of frailty parameters. p an audit of the use of psychotropics in an extended care setting s perumal, h toohey, c mcgann our lady’s hospice and care services, dublin, ireland background: polypharmacy, inappropriate prescribing and the use of psychotropics are contributing factors to the older person in resi- dential care being susceptible to falls, delirium and hospitalisation. as a result, all extended care facilities in ireland are now reviewed by the health information and quality authority (hiqa). current guidelines require -monthly review of every clients’ medications, with emphasis on the judicious use of psychotropics. methods: a point prevalence review of each client’s medication prescription was carried out. only regular psychotropics were selec- ted and categorised by the following bnf classification: benzodiazepines, first generation/atypical antipsychotics, selective serotonin reuptake inhibitors, tricyclic antidepressants, other antide- pressants and non-benzodiazepine hypnotics (z-drugs). results: a total of medication prescriptions were reviewed. owing to the specialist care provided in our extended care facility, % of our residents are categorised as ‘‘fair deal’ and the remaining % as level palliative care. the latter are clients with a life-threatening illness resulting in a prognosis of between and months. the average age was years. % of our residents were on one or more psychotropics. regular benzodiazepines were prescribed in % of our clients, followed by % on antipsychotics and % on anti- depressants. z-drugs were prescribed in % of our clients. conclusion: the use of psychotropics appears to be high and may represent the complexity of our clients. the high rate of antidepres- sant use likely reflects improved diagnosis and management of depression in the older person. the use of benzodiazepines and z-drugs is excessive and needs to be addressed. we welcome the hiqa directive and have set up a pharmacist-led review process which provides regular and meaningful dialogue between clinician, nursing staff and pharmacist. a re-audit is scheduled in months to assess the impact of this multi-disciplinary review process on the responsible use of psychotropics. p towards a profile of dementia risk and online supports for dementia risk reduction: translating findings from a robust model based on modifiable risk factors maria pierce, muriel redmond, kate irving dublin city university, dublin, ireland background: while the causes of dementia are not completely understood, certain risk factors are known. although some risk factors are non-modifiable (e.g. age, genetics), a surprising number are modifiable including hypertension; cholesterol; obesity; alcohol consumption; smoking; physical and cognitive activity. it is the complex interaction and interplay of various risk factors which con- tributes to the development of dementia. however, awareness of modifiable risk factors for dementia is low and there is need to inform people of the steps that can be taken to improve brain health and reduce future dementia risk. here, we report on work towards trans- lating a dementia risk model into a dementia risk profiler and the development of an online support environment to help individuals in midlife adopt lifestyle changes, called in-mindd. methods: data from a robust dementia risk model based on an inventory of modifiable risk factors was translated into a dementia risk profiler, which involved designing an online self-administered questionnaire with digital encoding, following specific transformation rules. this was accompanied by the development of the online sup- port environment informed by evidence-based recommendations on strategies for making lifestyle changes. results: the work has resulted in an online risk analysis system, which generates a lifestyle for brain health (libra) profile for individuals in midlife. a support environment comprising a collection of online resources, personalised for individuals, has also been developed. it includes guidance on modifiable risk factors for dementia, a personalised plan, incorporates goal setting, and provides an opportunity for users to connect with each other though social media and with experts on dementia risk reduction. conclusions: the in-mindd profiler and online support environ- ment have the potential for use in primary care practice. a study to test the feasibility of the in-mindd system in practice is taking place in ireland, scotland, the netherlands and france. p an alternative home-based, electronically monitored model of interim care (ic) dermot power, estelle ogbebor, ciara dowling, eamonn brazil, mary day mater misericordiae university hospital, dublin, ireland background: interim care (ic) in a hospital or nursing home setting is proposed for post-acute care role under the geriatric model of care (rcpi/hse publications ). we describe our experience of a novel alternative model of ic, delivered directly into a patient’s own home, supported by use of remote monitoring equipment supervised by a specialist geriatric team. methods: in this pilot, post-acute, elderly patients were recruited to our ic-at-home service. on discharge, a partner home care agency (bluebird) provided up to visits per day. at each visit clinical parameters including pulse, blood pressure and oxygen saturation were measured with weight checked weekly. the monitoring equip- ment transmitted the results directly to the cloud via g technology. the results were then viewed twice daily with variances triaged to one of pathways: ( ) next day review at our geriatric rapid access clinic, ( ) domiciliary review by the geriatrician, or ( ) referral to the emergency department. the service was provided for a period of up to weeks with final patient disposal to (a) remain at home ± hcp, (b) re-admit to hospital, (c) admit to nursing home or (d) hand-off to a home care package results: thirteen patients ( female, mean age years) utilised the service, for a mean of . weeks. four ( %) required geriatrician domiciliary visits, required re-admission following clinical deteriora- tion, were admitted for further rehabilitation, were discharged with a home care package and were discharged without formal supports. s ir j med sci ( ) (suppl ):s –s conclusions: ic is a poorly studied but increasingly utilised form of care. our home-based model appears to be an acceptable alternative to traditional ic, obviating the requirement for expensive infrastruc- ture and furthermore functioning as a safe, effective trial of supported home discharge, validating this choice for many patients and exposing safety pitfalls for others. p an unusual cause of arm weakness: ‘‘don’t let the cat out of the bag’’ maire rafferty, sarah coveney, joanna mcglynn, kieran o’connor, suzanne timmons mercy university hospital, cork, ireland background: computerised tomography (ct) findings of a cerebral infarct should be revisited when a patient presents with progressive neurological symptoms. case study: a year old man with long-standing addison’s disease presented to hospital in december after a fall. he mentioned that his left arm had been weak for weeks. neurological examination was initially normal and ct brain was interpreted as showing old left cau- date and right lentiform nucleus infarcts, with diffuse white matter ischaemia. his arm weakness progressed over the next week during rehabilitation, and magnetic resonance imaging (mri) showed the right basal ganglia lesion to be atypical for an infarct, with differentials including neoplasm and low grade infection. cerebrospinal fluid (csf) showed mild lymphocytosis and borderline elevated protein levels. a brain biopsy was considered but deferred until infective causes were excluded. csf was negative for herpes and atypical organisms and investigations for tuberculosis proved negative. the hospital’s infec- tious disease consultant raised the possibility of toxoplasma infection, given the location of the lesion, and toxoplasma serology revealed positive igg and negative igm titres, typical of chronic infection (with presumed reactivation due to his immunosuppression). it later tran- spired that the man often fed stray cats near his house. eradication therapy was commenced. repeat mri after weeks showed a dramatic shrinkage of the lesion, with partial resolution of arm weakness. conclusion: toxoplasmosis is caused by infection with the intra- cellular parasite toxoplasma gondi, and is very common worldwide, usually causing subclinical disease. cerebral toxoplasmosis is rare, although well-noted to occur in immunosuppressive disease, and can be fatal. a solitary brain abscess, as in this case, can present with seizures or focal neurological deficits. there is a known predilection for the basal ganglia, possibly related to blood supply, which luckily suggested the correct diagnosis in this case. p denosumab continuation in the primary care setting; is cost contributing to decreased compliance? navneet ramlaul , caroline ryan , fiona o’sullivan , declan lyons , margaret o’connor , catherine peters department of medicine, division of ageing and therapeutics, university hospital limerick, limerick, ireland; st. camillus’ hospital, limerick, ireland background: long term bisphosphonate treatment either in oral or in intravenous form has been associated with poor compliance in several studies. thus denosumab, administered subcutaneously every -months, is expected to improve treatment adherence in the primary care setting. denosumab is a human monoclonal antibody licensed for treatment of osteoporosis in postmenopausal women at increased risk of fractures. our aim was to compare compliance rates in an irish primary and secondary care setting. methods: this study was based on chart review of patients attending a bone health nurse specialist for initiation of treatment with de- nosumab between february and february . results: patients (n) were identified ( males and females). the median age was years (range – ). denosumab was dis- continued in patients due to increased frailty or death. ( %) patients were discharged to primary care for long-term administration of denosumab. out of the patients discharged to primary care have attended for at least treatment. was too frail to continue and were non-compliant as they were non-medical card holders and would have to bear the costs. conclusions: this study shows % compliance in the secondary care setting vs. % compliance in the primary care setting. a single factor which is cost accounts for the drop of % in adherence rates. currently, the drug costs eur per year, eur of which is refundable under the drugs payments scheme. full cost is not covered under the critical illness scheme as oste- oporosis is not listed. in the coming years, about , people aged + have lost or will lose their medical card. denosumab, an ideal drug to give in the community but costs (because it will be incurred by patients) will negatively impact adherence rates as illustrated in our study. p frailty in older patients discharged from a general hospital david easty, brenda kwiatkowski, mohammed mohammed, brid jordan-murphy, anna murphy, killian nugent, eithne harkin, michael reardon wexford general hospital, wexford, ireland background: frailty is increased vulnerability to poor resolution of homeostasis after a stressor event e.g. a respiratory tract infection. those with frailty may not recover to their previous health after an insult. increased frailty is associated with higher mortality and mor- bidity rates. prevalence rates are % in people over years and % over years of age. methods: prospective adult patients (n = ) being discharged from our acute medical wards, were scored for clinical frailty, using the clinical frailty scale (cfs). this was done in the discharge lounge over an week period, days per week by senior nurses. scores (cfs) c on this scale was taken as clinical frailty. results: data was available for patients. % were males. % of patients were c years of age. ( %) patients were over years. older patients c years (n = ) had a higher cfs than those \ years, (mean of . compared to . , sd of . and . respectively) (p b . ). in those \ years ( %) ( males) were frail. in those c years ( %) ( males) were frail and in those c years ( %) ( males) were frail. conclusion: of those being discharged from our acute hospital, nearly half of those over the age of years and three quarters of those over years are considered frail. this has big implications for the adequate provision of community services to maintain these elderly patients at home. ir j med sci ( ) (suppl ):s –s s p an audit of the prevalence of pain and its management in elderly hospitalised patients aoiffe lemasney, fiona roberts, padraig bambrick, george pope, riona mulcahy waterford regional hospital, waterford, ireland background: pain, both acute and chronic, is a common complaint of elderly hospitalised patients. research has suggested that pain is often under-recognised in this group. the aim of this work was to assess the prevalence, assessment and management of pain in elderly inpatients. we also sought to document the impact of pain on patient’s mobility and sleep. methods: we interviewed medical inpatients aged over using a specially devised -point survey. exclusion criteria included haema- tological/oncological patients, reduced consciousness, being critically unwell or unable to answer the questionnaire. data was obtained from the patients’ medical charts. results: thirty-nine ( %) patients interviewed reported pain of whom ( %) reported chronic pain. pain was documented in the medical notes of just ( %) of these patients. ( %) of patients reported sleep disturbance or reduction in mobility as a result of their pain. pain assessment tools (visual analog scale) were used in ( %) of patients with pain. ( %) of patients were on regular analgesia. ( %) were prescribed analgesia as required. only ( %) patients had side effects of analgesia documented in their notes. conclusion: this audit highlights the high prevalence of pain in elderly inpatients. pain remains poorly assessed and documented in the patients notes. the impact of pain is underestimated as % of patients reported pain as a significant contributing factor to their reduction in mobility and interrupted sleep. pain should not be viewed as a normal part of the ageing process. it is essential that awareness of pain is raised and appropriate assessment and management implemented. reference: . gianni w, madaio ra et al ( ) prevalence of pain in elderly hospitalized patients. arch gerontol geriatr ( ): – p can we utilise hospital readmission rates as a key performance indicator? stephanie robinson , michelle canavan , eamon mulkerrin , martin o’donnell galway university hospital, galway, ireland; clinical research facility, national university of ireland, galway, ireland background: readmission rates in the days following discharge are commonly used as clinical governance indicators. despite the utility of this performance indicator our understanding of causality for readmissions and the cohort of patients requiring unavoidable read- mission remains poor. in this study, we hypothesise that the cohort of patients requiring readmission need to be subdivided (i.e. avoidable and unavoidable) when using this metric as a performance indicator. the aim of this study is to explore methods currently used to describe, and analyse readmission rates. methods: we examined a cohort of consecutive non-elective medical admissions to a university teaching hospital between and . the pattern of readmissions was examined through using the clinical information management system (cims) which allows comparison of a range of measures of performance and can, identify variations that may be associated with lower quality of patient care and/or higher cost. results: , consecutive medical patients were discharged fol- lowing a non-elective medical admission between and . of these, , patients required readmission to the same hospital within days. the overall medical readmission rate was . % ( % ci . , . ). the risk of readmission was higher within certain medical subspecialties, particularly in geriatric medicine where higher read- mission rates may reflect a frailer cohort of patients. readmission rates are consistently higher in the – day period following dis- charge than after – days (p = . ). conclusions: using readmission rates as an indicator of performance particularly in geriatric medicine can be misleading. categorising admissions into avoidable and unavoidable admissions and focusing on the reasons for avoidable admission may yield more helpful information for planning healthcare budgets. in order to effectively target and avoid readmissions further research is needed to effectively stratify patients. p an audit of the quality of nursing home referral letters to the emergency department in patients requiring medical admission patrick cullinan, tom walsh, stephanie robinson, michelle canavan, martin o’donnell, eamon mulkerrin galway university hospital, galway, ireland background: anecdotal evidence would suggest that the quality of medical letters accompanying nursing home residents to the emer- gency department is often inadequate. referral letters are important as the receiving hospital physicians are generally doctors who frequently have no prior knowledge of the patient. this study aims to determine the proportion of nursing home residents with a referring doctor’s letter on presentation to the emergency department and also to objectively audit the quality of medical information contained in those letters. methods: a random sample of medical notes of patients presenting from nursing home medically admitted through the emergency department of galway university hospital between / / and / / were selected. the charts of patients were examined for referral letters from gps. the quality of these letters was then assessed based on pre-defined parameters. results: of admissions assessed, % did not have an accom- panying letter. analysis of the remaining % revealed several striking deficiencies including: absence of the patient’s medications in %, lack of allergy status in %, vital signs such as temperature and respiratory rate not recorded in and % respectively. results of investigations were included in only % of letters. details of any pre-hospital treatments were present in %. none of the letters audited included the resuscitation status or details of communication with relatives. the letter had been completed by the patients regular gp in . % of cases. conclusions: medical handover of nursing home patients to the ed is inadequate by acceptable standards. basic information such as med- ications and co-morbidities is frequently neglected; information that can be difficult to obtain directly from this patient demographic. this compromises patient care and time management in over-crowded emergency departments. these findings strongly indicate the need for an agreed and standardised pro-forma for the handover of nursing home patients from primary to secondary care. s ir j med sci ( ) (suppl ):s –s p a collaborative approach to falls prevention and management through action research daragh rodger, anne spencer hse, dublin, ireland background: falls awareness and falls prevention are a priority for health care providers of older adults (dohc, hse, ncaop, ). according to the burden of care study in (nuig), falls cost our economy € million and projected to cost € million by with our ageing population. in acknowledgement of this a proactive approach was taken to develop and implement a new falls prevention programme—forever autumn supported by the innovative develop- ment of an elearning education resource. the aims and objectives were to raise awareness of falls among all staff groups and to enhance the safety of the patients and residents in our care methods: the research approach taken was participatory action research in a large care of the older person facility in dublin north city. data collection of falls pre programme development from units in . development and implementation of a new falls awareness and prevention programme in . data collection on falls post implementation of the programme from all units in results: following the implementation of the programme there was a reduction in the number of falls across the campus by . % with a % reduction in the residential units and a % reduction in the inpatient units. as a direct result of the programme there is a new data measurement—data collected on the number of interventions to pre- vent a potential fall. conclusion: the reduction of potential falls data is evidence to our staff of their commitment to making falls prevention and management a priority for the older adults in our care. forever autumn has generated a lot of interest externally which prompted the development of the forever autumn community of practice bringing falls awareness to a wider audience putting falls prevention and management on the agenda within our healthcare organisation and beyond. p communication of confirmed diagnoses of dementia and delirium between hospital and general practitioners niamh scanlan , siobhan kelly , tara coughlan , ronan collins , sean kennelly , des o’neill amnch, dublin, ireland; icgp, dublin, ireland background: dementia and delirium are common syndromes among hospitalized older people: there is abundant evidence of widespread failure to detect, investigate and treat these conditions. however, once diagnosed among general medical and surgical patients through comprehensive geriatric assessment, it is not clear whether or not this important diagnosis is transmitted by the treating team to the patient’s family doctor. such communication is an important aspect of conti- nuity of care for frail older people. we investigated the extent to which primary medical and surgical teams communicated diagnoses of delirium and/or dementia to family doctors in discharge letter. method: retrospective review of consecutive geriatric medicine consultations where a diagnosis of delirium and/or dementia was established and annotated, and review of the discharge summary by the primary treating team. results: of patients, ( men, women), . % (n = ) were general medical, . % (n = ) general surgical and . % (n = ) orthopaedic. the mean age was . years (+ . ). the diagnosis of dementia/delirium was recorded in . % (n = ) of discharge summaries: in a further . % (n = ) terms such as ‘confusion’ were included in the narrative. conclusion: despite diagnosis through comprehensive geriatric assessment, only a minority of primary treating medical and surgical teams included the diagnosis of these important syndromes in dis- charge summaries. this has important potential consequences for continuity of care, and requires scrutiny of the underlying reasons in terms of designing appropriate educational and systems interventions to remedy this deficit in communication between primary and sec- ondary care. p acute stroke admissions to a model- hospital: analysis of atrial fibrillation and anticoagulation status paul scully , fiona o’sullivan , nora cunningham , peter boers , catherine peters , margaret o’connor , declan lyons division of ageing and therapeutics, department of medicine, university hospital limerick, limerick, ireland; division of neurology, department of medicine, university hospital limerick, limerick, ireland background: atrial fibrillation (af) is a major risk factor for stroke with those affected having a five-fold increased stroke risk. warfarin therapy has been shown to reduce the risk of stroke in patients with af by more than % compared with no treatment, however, only about half of eligible patients receive treatment and only half achieve therapeutic ranges more than % of the time. the aim of this study was to examine acute stroke presenting to a model- hospital for af and anticoagulant status. methods: a prospective database was constructed on all acute stroke admissions to a university hospital during . a retro- spective analysis was undertaken on all acute stroke patients with known or new onset af. patients were analysed on the basis of demographics, stroke type, af status and use of oral anticoagulant agents. results: in there were acute stroke admissions with % (n = ) having af. the average patient age at admission was . years (range – ) with % (n = ) being male. % (n = ) of patients had a known history of af prior to admission with % (n = ) newly diagnosed. of those patients with known af prior to admission, % (n = ) were on anti-platelet or anti- coagulation therapy. % (n = ) patients were on warfarin, % (n = ) on aspirin, and % (n = ) on dabigatran. for those patients who were on warfarin therapy prior to admission only % (n = ) had an inr within the therapeutic range ( – ) at initial presentation. conclusions: the results from the current study show that the prevalence of af in acute stroke presentation to this hospital is similar to published results. for those on warfarin therapy the majority of stroke patients had a non-therapeutic inr. with the advent of newer anticoagulant agents it will be of interest to assess for changes in acute stroke presentation and management. ir j med sci ( ) (suppl ):s –s s p implementation of a dedicated orthogeriatric service saves the hse a million euro elaine shanahan, carla henderson, audry butler, sheila carew, tina sheehy, aine costelloe, brian lenehan, catherine peters, margaret o’connor, declan lyons, jude ryan university hospital limerick, limerick, ireland background: hip fracture is common in older adults and is associ- ated with high morbidity, mortality and significant health care costs. a pilot orthogeriatric service was established in a university hospital in july to ascertain if such a service would improve patient outcomes and reduce costs. methods: all patients admitted with a fractured neck of femur for a -year period beginning july received a perioperative geriatric assessment including optimization of medical condition, bone health and falls assessment. a comparative control group were selected from the national hip fracture database and comprised patients admitted to the same hospital with fractured neck of femur in the year period beginning july . hospital length of stay, number of patients requiring reha- bilitation and discharge rates to long term care were recorded and used as a means of comparing the two groups and calculating costs. results: there were patients in each group. there was a day reduction in acute hospital stay (p = \ . ). with a cost per bed day of € , this saved € , . there was a % reduction in patients requiring rehabilitation and a . day reduction in rehab length of stay. the cost per day of rehabilitation is € . there was therefore savings of € , . there was a % reduction in patients requiring long term care saving € , over a year period. the total sav- ings to the hse over a year period was € , , . the cost of the pilot service was € , . however we estimate a full time service with consultant, registrar and secretarial support would have an annual cost of € , . conclusions: the pilot orthogeriatric service improved patient out- comes in a cost-effective manner and implementation of a full-time service in one tertiary orthopaedic centre could save the hse over a million euro per year. p nursing versus consultant led rehabilitation: a review post change of service elaine shanahan , mohammed shahril hashim , mairead greene , mavis long , margaret o’connor , declan lyons , catherine peters university hospital limerick, limerick, ireland; community hospital of the assumption, thurles, ireland background: rehabilitation is an essential component of the care of many older adults. debate is ongoing as to whether this care is more efficiently delivered by a consultant or nurse led service. the com- munity hospital has an bed rehabilitation unit that was traditionally nurse led with the support of a gp medical officer. in september , a consultant geriatrician was appointed to the rehabilitation unit. we aimed to assess the impact of this change in service delivery. methods: the number of patients admitted to the unit and their average length of stay was retrospectively collected for a year period after the appointment of the consultant. this was compared to the same period the preceding year. results: there were patients admitted to the nurse-led rehab unit from september to september . their average length of stay was days. in the year period starting september , there were patients admitted to the unit and their average length of stay was days. patients admitted under the consultant led service had a poorer functional status and a higher number of co-morbidities on admission. conclusions: a consultant led rehabilitation service led to a day reduction in length of stay while increasing patient flow through the unit by . %. this was despite the fact that patients admitted under the consultant had higher rehabilitation requirements than those admitted previously. further review will look at discharge outcomes, primary condition leading to rehabilitation need and re-admission rates to the acute hospitals. p the establishment of an orthogeriatric service improves patient outcomes following a hip fracture carla henderson , elaine shanahan , audry butler , brian lenehan , margaret o’connor , catherine peters , declan lyons , jude ryan university hospital limerick, limerick, ireland; university of limerick, limerick, ireland background: a multidisciplinary approach has been shown to improve outcomes of older patients with fragility fractures. we piloted an orthogeriatric service at a university hospital for patients with a femoral neck fracture to determine if there was a change in major patient outcomes before and after establishment of the service. methods: all patient data was collected prospectively on an or- thogeriatric filemaker database from july to july . data was compared to previously recorded data (irish hip fracture database) on a cohort of hip fracture patients admitted to the same orthopaedic trauma unit from july to july . results: length of acute hospital stay was significantly reduced from a median of ten to days (u = - . , p = . ) following establishment of the orthogeriatric service. although in-hospital mortality rate was reduced from . to . %, this reduction was not statistically significant ( = . , p = . ). however, -year mortality rate was significantly reduced ( = . , p = . ) from to . % following the initiation of the perioperative service. the orthogeriatric service significantly reduced the number of med- ical consults required from to % of patients ( = . , p = . ). similarly, there was a significant reduction of % in the number of patients requiring further rehabilitation ( = . , p = . ). patients in the pre-service establishment group were twice as likely to be discharged to a nursing home (or , ci . – . ) and thus more patients in the orthogeriatric service group experienced a significant preservation of their independency following femoral neck fracture ( = . , p = . ). conclusions: the establishment of an orthogeriatric service at uhl resulted in enhanced management of patients following a hip fracture, as reflected by significant improvements in patient outcomes. reduction in bed days used and use of other medical and rehabilitation resources could result in significant financial savings to the hospital. p an interdisciplinary stroke rehabilitation service in a county hospital: overview of the past years elaine ranahan, emma mcguinness, sankar prasad shanmuga sundaram, martin mulroy, colette vize louth county hospital, dundalk, ireland background: approximately , people in ireland have a stroke each year. acute stroke therapy is managed in a county hospital. s ir j med sci ( ) (suppl ):s –s this hospital provides an off-site stroke rehabilitation service for the louth/meath area. the unit contains beds. the stroke multidisci- plinary team includes medical, nursing, physiotherapy, occupational therapy, speech and language therapy, social work, dietician, with input from bed management and public health nurse liaison. objective: to compare and contrast the number of patients admitted to the off-site stroke rehabilitation service in a county hospital over the years since inception. methods: a retrospective chart review was performed on all stroke patients admitted to the stroke rehabilitation unit in the county hospital from january to december . data recorded included age, gender, length of stay and discharge destination. the data was analysed using stata. . results: patients were admitted in the year , patients in the year and patients in the year . the ratio of male/female admitted in the year is : , : in and : in . mean age of the patients admitted in the year is years, years (sd ; range – ) in the year and years (sd ; range – ) in . the mean length of stay in the year was days, days (sd ; range – ) in the year , days (sd ; range – ) in . ( %) patients went home in the year , ( %) patients in the year , ( %) patients in the year . conclusion: the stroke rehabilitation service at the county hospital has demonstrated an increase in patient throughput. further research is required to determine factors influencing successful home discharge including standardised outcome measures to provide evidence of patient’s functional outcome scores at discharge. p retrospective cohort study of a county hospital stroke patients: demographics and risk factors emma mcguinness, elaine ranahan, sankar prasad shanmuga sundaram, martin mulroy, colette vize louth county hospital, dundalk, ireland background: approximately , irish people have a stroke each year. hypertension is the most important risk factor for developing both ischemic and haemorrhagic stroke. objective: ( ) to examine risk factors and demographics of patients who attended the stroke unit in a county hospital in . ( ) to analyse the predisposing risk factors of stroke within a stroke reha- bilitation service in a year period. methods: a retrospective chart review was performed on all stroke patients admitted to the stroke rehabilitation unit in a county hospital from january to december . data recorded included age, gender, length of stay, discharge destination, type of stroke and past medical history. the data was analysed using stata. . results: data on patients was reviewed over the year recorded. % (n = ) of stroke patients had suffered a stroke secondary to infarction and % (n = ) secondary to haemorrhage. of all men admitted with stroke % (n = ) had suffered an infarct while % (n = ) had suffered haemorrhage. similar findings were observed in female patients with % (n = ) suffered infarct and % (n = ) suffering haemorrhagic stroke. of risk factors for stroke examined in this cohort the commonest were a history of hypertension ( ; %), atrial fibrillation ( ; %), previous stroke ( ; %) and diabetes ( ; %). patients had stroke secondary to infarct stayed (mean days sd ; range – ) in the stroke unit, ( %) patients discharged to home, ( %) patients discharged to long term care, ( %) dis- charged (other). patients had stroke secondary to haemorrhage stayed (mean days sd ; range – ) in the stroke unit, ( %) patients discharged to home, ( %) patients discharged to long term care, ( %) discharged (other). conclusion: patients with haemorrhagic stroke were more likely to have an increased length of stay. further research needed to investi- gate contributing risk factors and resulting in prolonged duration of stay and non-home discharge. p the feasibility of a prescribed aerobic training programme in a sub-acute stroke population in a rehabilitation unit louise smith , sophie lang , emer guinan , sinead coleman , joseph harbison department of physiotherapy, st. james’s hospital, dublin, ireland; discipline of physiotherapy, trinity centre for health sciences, st. james’s hospital, dublin, ireland; consultant stroke physician and geriatrician, st. james’s hospital, dublin, ireland background: stroke is the most common cause of acquired physical disability in ireland. this limits physical activity in stroke survivors increasing the risk of recurrent stroke. current guidelines recommend aerobic training at – % of heart rate reserve (hrr) to ensure stroke survivors reach an adequate aerobic threshold. this study aimed to determine the feasibility of exercising at this light to moderate intensity level regardless of the level of mobility or disability post-stroke. methods: eleven subjects [mean . days post-stroke (range – ), mean age . (standard deviation . ) years, mean modified rankin scale score . (range – )] participated in an intervention consisting of cycle ergometry for minutes three times weekly for weeks. exercise intensity was progressed from to % of hrr. primary feasibility outcomes included recruitment, attendance and dropout rates, time spent exercising within the target heart rate zone and incidence of adverse events. secondary outcomes included measures of cardiorespiratory fitness (vo max) and mood (hospital anxiety and depression scale). data was analysed using descriptive analysis. differences in pre to post-test measures were assessed using paired sample t-tests and the wilcoxon signed-rank test. results: attendance rate at exercise sessions was % ( – %). the mean average time spent exercising in the target heart rate zone was % ( – %). failure to reach the target heart rate was pri- marily due to fatigue. mild adverse events were recorded for % of the sessions (fatigue, mild leg pain, slight shortness of breath). there was no statistical significance in vo max (p = . ) or mood (p = . ) post-intervention. conclusion: prescribing light to moderate intensity aerobic training is safe in stroke survivors. this population may have difficulty reaching the target heart rate of – % of hrr recommended by current guidelines. further research is required to determine the barriers to effective aerobic training post-stroke. p extended zoledronic acid treatment in older patients with osteoporosis josephine soh, james foley, miriam casey, j bernard walsh, rosaleen lannon, kevin mccarroll medicine for the elderly directorate, st james’s hospital, dublin, ireland background: intravenous zoledronic acid is a potent bisphosphonate used in the treatment of postmenopausal osteoporosis. a once yearly ir j med sci ( ) (suppl ):s –s s infusion given over a year period is known to reduce hip and morphometric vertebral fractures by and % respectively. extending treatment to up to years also appears beneficial in reducing vertebral fracture risk and maintaining gains in bone mineral density. we aimed to investigate the effects of extended treatment with zoledronic acid on bone mineral density (bmd) in a cohort of frail older patients with osteoporosis. methods: study subjects were post-menopausal patients attending our bone health service who had received treatment with zoledronic acid for more than years. relevant data was obtained from our bone health database and electronic patient record (epr) system. all patients had a dxa performed within months of starting and stopping treatment. results: patients were identified. mean age was . years (range – ). mean duration of treatment was . years (range – years) with a mean dose of . mg per year. the respective mean change in bone mineral density (bmd) in the lumbar spine was + % (p \ . ), total hip bmd + % and neck of femur + %. patients tolerated treatment very well with no significant adverse effects. conclusion: we found that treatment with zoledronic acid over an extended period was associated with very significant gains in bone mineral density (bmd).the greatest increase in bmd occurred in the vertebrae consistent with other studies and reflective of its preferential effect on trabecular bone. furthermore, treatment was well tolerated. overall, findings strongly support the use of zoledronic acid beyond years in older adults particularly in those with severe osteoporosis at high risk of future fracture. p patient profile, length of stay, cognitive impairment and elderly mobility scale scores in patients over years admitted to a major trauma hospital post femoral fracture peter spencer, aine masterson, daire plunkett, dervilla danaher, joseph duggan mater misericordiae university hospital, dublin, ireland background: the aim of this study was to develop a profile of patients admitted with femoral fractures including age, surgery type and cognitive impairment and to determine the impact of the above factors on rehabilitation outcomes and hospital length of stay. methods: patient profiles for consecutive patients with femoral fractures including age, type of surgery, average length of stay (av- los), cognitive status and discharge destination were recorded prospectively. each patient was assessed by physiotherapists using the elderly mobility scale (ems) on initial assessment and on dis- charge from the inpatient ortho-geriatric service, to assess any significant changes. results: the greatest proportion of patients was in the – year old range ( . %) with a male:female ratio of : . eighty-five percent of patients were admitted from home while fifteen per cent were admitted from nursing home care following a fall. average length of stay (av- los) was highest post open reduction internal fixation (orif) of femur ( days) in contrast to patients post hemiarthroplasty ( . days). when post-op ems was compared with discharge ems score a statistically significant increase of . was noted (p \ . — paired t-test). the ems scores on discharge varied according to cognitive status. average ems score for patients with no cognitive impairment was . while for patients with advanced dementia/alz- heimers ems scores averaged . . sixty percent of patients required further rehabilitation in a post-acute hospital on discharge. conclusions: this data indicates that rehabilitation has a beneficial impact on function and mobility in patients over years post femoral fracture. the data also suggests that cognitive impairment is a determinant of functional and mobility outcomes. a majority of patients post femoral fracture require further rehabilitation ( %) highlighting the need for access to post-acute hospital rehabilitation beds. p analysis of acute ischaemic stroke presentations abirami subramaniam, arun subramanian, hannah murugan, paul cotter, rory mcgovern st. luke’s general hospital, kilkenny, ireland background: under-recognition of stroke symptoms with resultant delayed presentation to hospital is a limiting factor in delivering thrombolytic therapy of acute stroke patients. the fast campaign has been shown to improve population awareness of the three com- mon stroke symptoms but does not cover all possible stroke symptoms. we compared differences between patients arriving within the thrombolysis window to those with delayed presentation. methods: we analysed retrospective and prospective data of ischaemic stroke cases presented to our hospital between january and february . data were collected from patient history and medical notes. descriptive statistics and chi square test were used for analysis. patients were categorised by arrival time \ . hours and [ . hours from stroke onset. characteristics of the two groups including time to medical attention, clinical symptoms, nihss scores and fast awareness were compared. results: of the cases, there were wakeup strokes. the median time to arrival of non-wakeup strokes was ( – , ) min. cases arrived \ . hours and cases [ . hours (median time and , minutes respectively; p = . ). there was no age difference between the groups ( . vs. . years; p = . ), no difference in proportion of males ( . vs. . %; p = . ), and no difference in proportion from co. kilkenny ( . vs. . %; p = . ). those \ . hours were more likely to have fas symptoms ( vs. %; p = . ) and anterior circulation symptoms ( vs. %; p = . ). there was no difference in the proportion with nhss [ (p = . ) and fast awareness between the groups (p = . ). conclusion: our study highlights that patients were more likely to present earlier with the common anterior stroke symptoms reflected in the fast tool. however certain acute stroke symptoms are under- recognised and these patients are unlikely to receive thrombolysis. our study reinforces the need for more comprehensive public edu- cation on the clinical symptoms of stroke. p limiting factors to thrombolysis for acute stroke abirami subramaniam, arun subramanian, hannah murugan, paul cotter, rory mcgovern st. luke’s general hospital, kilkenny, ireland background: thrombolysis for ischaemic stroke has been shown to improve clinical outcomes but the overall rate remains low. a national target of . % has been set. timely arrival and assess- ment is vital to ensure appropriate administration of thrombolysis given the limited time window. in this study we evaluated pre-hos- pital and in-hospital factors associated with limiting thrombolysis. methods: we analysed retrospective and prospective data of ischaemic stroke patients between january and february . s ir j med sci ( ) (suppl ):s –s medical notes were used for data collection. we evaluated patient demographics, pre-hospital events and time intervals from symptom onset to hospital presentation, ambulance dispatch timings, and in- hospital events to execute the stroke care pathway. results: mean age was . ( – ) years and male %. median time to presentation of non-wakeup stroke was ( – , ) min. cases presented within . hours of symptoms onset and cases were thrombolysed. the reason for non-administration of thrombol- ysis was due to resolving deficits ( %), minor deficits with nihss \ ( %), and in-hospital failure ( %). of the cases arriving [ . hours, were wakeup strokes and the remaining cases were due to pre-hospital delay. factors associated with delay include poor symptom recognition ( %), unclear symptom onset ( %) and prior gp visit ( %). in those with delayed presentation, ( %) cases with nihss [ could potentially have received thrombolysis had they arrived within the time window. conclusions: poor recognition of stroke symptoms and resultant delayed presentation is the main pre-hospital limiting factor and poses a significant challenge to improve thrombolysis delivery. thrombol- ysis rates also remain low due to eligibility criteria and a narrow therapeutic time window. improved stroke recognition and treatment of wakeup strokes could potentially increase the proportion of patients receiving thrombolysis. this reinforces the importance of enhancing public awareness of clinical symptoms to decrease pre- hospital delays and increase thrombolysis rates. p head up tilt table testing (hutt) for transient loss of consciousness (tloc): are referrals appropriate and do they concur with european society of cardiology (esc) guidance? can we identify areas where a specific referral form would improve appropriateness and patient safety? michelle tennyson, charlie ong, kevin dynan ulster hospital, belfast, uk background: our falls & syncope service commenced hutt in , to improve investigation of unexplained falls and tloc. since then referral numbers have escalated, from outside our department and other hospitals. referral information was variable: we reviewed hutt indications and whether referrals met esc guidance; whether fitness to drive was addressed and if cardiac investigations were completed prior to hutt. method: referrals and hutt reports for patients in were retrospectively examined. hutt indication, source of referral and results analysed. results: hutt tests performed in , mean waiting time days. of the referrals audited, only % originated from our department (mean age ). the remainder (mean age ) originated from cardiology ( %), neurology ( %) and general medicine ( %). interestingly % attended different specialties and % attended specialties. referral indications: % neurocardiogenic syncope (ncs) sus- pected but atypical, % unexplained tloc with orthostatic component, % delayed orthostatic hypotension (oh) suspected. these met esc guidance, however % were inappropriate, referred solely with dizziness. % of patients underwent cardiac investigation prior to hutt. patients’ driving status noted on \ % of referrals. hutt findings: % oh, % vasodepressor ncs, % mixed ncs and % cardioinhibitory ncs (mean asystolic pause seconds— referred for pacemaker). % carotid sinus hypersensitivity. conclusions: majority of referrals complied with esc guidance. % of referrals attended or more specialties, demonstrating the clinical burden of tloc investigation and the potential for guidelines to streamline this process. few referrals mentioned driving advice, and more patients should have undergone cardiac investigation prior to hutt. a dedicated referral form prompting these issues could improve appropriateness of tloc investigation. our observations concur with esc assertion that patients can respond positively to a meaningful diagnosis of ncs with a focused management plan. p staff attitudes to the seasonal influenza vaccination programme c tiernan , j collier , l cogan the royal hospital donnybrook, dublin , ireland; school of medicine and medical science, ucd, dublin , ireland background: as immune competence declines with age, the elderly are particularly vulnerable to the influenza virus. residential care facilities are high risk environments for outbreaks given the older age of residents and communal living arrangements. health authorities encourage uptake of the seasonal influenza vaccine amongst health care workers (hcws) to reduce risk of transmission, however uptake has traditionally been low. we sought to examine attitudes to vac- cination amongst staff in our institution. methods: questionnaires were distributed throughout all wards and departments within the hospital. age, gender, and occupation were noted as well as intended vaccine uptake, reasons for declining vac- cination and opinion on mandatory vaccination of hcws. the survey was distributed in september , prior to the rollout of the – vaccination programme. results: responses were received (total employees , . % response rate). % ( / ) intended to avail of vaccination with % ( / ) declining ( % don’t know). a breakdown by occu- pation of those who intended to avail of vaccination is as follows: allied health: %, nursing: %, health care assistant: %, medical: %, administration: %, other: %. of those declining vaccination, % cited a fear of side-effects. . % felt they didn’t need it and % were of the opinion that the vaccine didn’t work. % stated that they got the flu from previous vaccina- tion. no-one reported being advised not to receive the vaccine by a medical practitioner. % ( / ) felt that influenza vaccination should not be mandatory for hcws. ( % yes, % don’t know). conclusion: intention to participate in the vaccination programme was particularly low in those who have the greatest amount of patient contact i.e. nursing and health care assistants. a fear of side effects was identified as a major barrier to vaccination uptake. information tar- geted at these groups to alleviate fears may improve vaccination rates. p the impact of a regular multidisciplinary medication review on polypharmacy and psychotropic prescribing in care home residents: a follow-up study j collier , c tiernan , n casey , s evans , l cogan the royal hospital donnybrook, dublin , ireland; school of medicine and medical science, ucd, dublin , ireland background: polypharmacy is common in elderly nursing home residents. it is a challenge to balance adherence to guidelines for ir j med sci ( ) (suppl ):s –s s chronic disease management and the perils of adverse drug effects. various professional bodies and regulatory agencies have recom- mended regular medication reviews to improve prescribing patterns. in , we introduced a weekly multidisciplinary medication review of residents attended by a pharmacist, clinical nurse manager and geriatrician. within months there was a reduction in the total number of medications prescribed per patient from . to . . psy- chotropic drug prescribing was reduced from . to . per patient and antidepressant prescribing from . to . per patient. the aim of this audit was to assess whether this intervention had a long term effect in maintaining the initial improvements. method: in september , residents were identified who had been residing in our facility for at least the preceding month. the total number of medications and psychotropic medications (as per british national formulary classification) for each resident was collected. laxatives and dietary supplements were excluded. the consumption of ‘as required’ medication was included if administered within the preceding hours. results: mean age was . years ( . % female). . % had cognitive impairment (mmse \ / ). the total number of medi- cations prescribed had increased from . to . per patient but remained lower than the pre-intervention number of . . psychotropic prescribing continued to fall from . per patient to . . there was a small increase in antidepressant prescribing from . to . . conclusion: this study demonstrates the continued positive impact of regular multidisciplinary medication review meetings on the prescribing of psychotropic medications, and in maintaining reductions in total number of medications for our elderly residents. it is imperative to continue to implement strategies to promote appropriate, individualised prescribing in this at risk vulnerable population. p a feedback survey of gps on a comprehensive multidisciplinary discharge summary sent out on patients discharged from an offsite rehabilitation unit james collier, caitriona tiernan, lisa cogan the royal hospital donnybrook, dublin , ireland background: communication between secondary and primary care is often inadequate. untimely and poor communication can lead to increased risk of patient re-admission and errors in medication rec- onciliation. our hospital operates an bed short term post-acute rehabilitative care (sparc) unit that provides specialist geriatrician led multidisciplinary rehabilitation for patients’ post-acute hospitali- sation. the aim is to optimise patients’ recovery and independence and facilitate a safe home discharge. a comprehensive typed dis- charge summary with input from all relevant allied health disciplines is sent to the primary care team on patient discharge. we aimed to assess local general practitioners’ (gps) views on the quality and usefulness of this discharge summary. methods: gps whose patients were discharged home from january to october were included. surveys were posted to gps requesting ratings on a point likert-like scale on aspects such as overall quality of medical information, timeliness of receipt of the document, results of investigations and changes to medication. results: the gps of eligible patients were included. there was a % response rate ( / ). discharge summaries were rated as very good/good in . %. in . % of responses, gps stated that direct communication during the patient admission would have had a positive impact on re-admission rates within the months following discharge from our unit. . % wished to receive discharge sum- maries by email. data protection was cited by those gps who did not want to receive reports electronically. conclusions: our comprehensive interdisciplinary discharge sum- mary was well received by gps. a proportion of gps requested enhanced communication from hospital doctors by telephone during the patient’s hospital stay. electronic transfer of information may become more feasible with the provision of secure email servers for gps from the irish college of general practitioners. we made improvements in clarifying and documenting any medication changes made. p a high uptake of the influenza vaccine by staff has a positive outcome for residents in long term care facilities: an observational audit tomasz tomasiuk, catherine dunleavy tara winthrop private clinic, swords, co. dublin, ireland background: the aim of this retrospective study is to demonstrate a significant link between the number of vaccinated staff and number of influenza like illnesses (ili) among residents from a long term care facility (ltcf). the health protection surveillance center (hpsc) reported the national uptake of influenza vaccination amongst staff in ireland averages at %. methods: the sample used in the study was residents and staff from a ltfc. the data was gathered since following an influenza outbreak. each outbreak of ili was recorded, and line listings of staff and residents affected were developed and analyzed. data collection of staff and residents vaccinated was recorded and audited annually. statistical comparative analysis was used to mea- sure the relationship between the amount of vaccinated staff and residents and episodes of ili. results: influenza season / : vaccinated staff = . %, residents = . %. staff with ili = . %. residents with ili = . %. positive swabs = %. influenza season / : vaccinated staff = %., residents = %. staff with ili = . %. residents with ili = . %. positive swabs + , %. influenza season / : vaccinated staff = %., resi- dents = . %. staff with ili = . %. residents with ili = . %. positive swabs = . % the statistical significance was calculated using standard deviation theory comparing influenza seasons and the significant difference between influenza season / and / was established. conclusion: there was significant reduction in number of ili in season / when staff vaccination level reached % optimizing community immunity (herd effect). the response rate to the immu- nization in older people reported by the hpsc is only – %. to further reduce the number of ili amongst residents it is crucial to vaccinate staff. this raises the question, should mandatory vaccina- tion programs be implemented for healthcare staff working in healthcare facilities? s ir j med sci ( ) (suppl ):s –s p a multi-disciplinary quality improvement initiative for a pre-prosthetic amputee rehabilitation pathway in a gerontological post-acute rehabilitation unit sarah tormey, mary nolan, kate o’mahony, emma nolan, yvonne doran cappagh national orthopaedic hospital, dublin, ireland background: quality improvement initiatives, consisting of collab- orative multidisciplinary input from key stakeholders, are essential for effective service development. the objectives of this quality improvement project (qip) were to: ( ) audit service provision for new amputees in a gerontological post-acute rehabilitation unit. ( ) implement changes in service provision using the hse change model. methods: a prospective observational audit of the current service for amputees was conducted. this included demographics, length of stay (los), physical outcome measures, referral to prosthetic rehabilita- tion service, discharge destination and home care requirements. the hse change model was used to facilitate development. this model consists of initiation, planning, implementation and mainstreaming phases. results: new amputees (female n = , male n = ) with an average age of years were admitted over a month period. their average los was days. the average functional independence measure (fim) score was on admission and on discharge. % (n = ) were referred to a prosthetic rehabilitation service. % (n = ) went home from the rehabilitation unit and % (n = ) were transferred back to the acute hospital. % (n = ) of those who were dis- charged home received a home care package. the initiation stage was completed through the audit. in the planning stage all stakeholders within the rehabilitation unit participated in a quality improvement forum. barriers and enablers to providing high quality service development were identified and resulting projects were implemented. these included staff education sessions, defining roles of the multi-disciplinary team (mdt), liaising with the relevant mdt of the referring hospital, reviewing suitable outcome measures and collating information on acute hospital los and community services including wound care management. conclusion: the stages of implementation and mainstreaming require ongoing development and re-audit. this qip ensures high quality care and facilitates improved communication to effect positive change for the service user. p time spent in physiotherapy in an acute stroke unit: is it enough? mary weir mcdonnell, fiona gorman, tom lee, tom o’malley mayo general hospital, castlebar, ireland background: the nice stroke rehabilitation guidelines rec- ommend that at least minutes ( minutes+) per day of physiotherapy should be offered to acute stroke patients who have the ability to participate and where functional goals can be achieved. there is little published data regarding time spent engaging in physiotherapy in acute stroke rehabilitation in ireland. the aim of this audit was to examine the amount of time spent engaging in physio- therapy with patients admitted with acute stroke over an week period and to identify the clinical and non-clinical barriers to par- ticipation in therapy. methods: a clinical audit form was completed daily by physio- therapists working on the acute stroke unit (asu). the following data was gathered: number and duration of therapy sessions, clinical and non-clinical reasons why therapy time was limited and other relevant demographic data. descriptive statistics were used to analyze the data. results: patients were admitted to the asu and assessed by physiotherapy during the audit period. of the patients admitted, had minimal physiotherapy needs and were excluded. this left patients with a mean age of years. the mean amount of therapy time per patient, per day was minutes (range – ). only ( %) patients received an average of minutes+ per day, while patients ( %) received minutes+ on at least day. % ( ) of physiotherapy sessions were limited in duration by clinical factors e.g. fatigue and behaviour and % ( ) were limited by non- clinical factors e.g. staffing, time. conclusion: our findings that only patients ( %) received phys- iotherapy of the intensity recommended by nice is evidence that significant changes in staffing and practice are needed. p challenges for gerontological nurse education and practice claire welford mowlam healthcare, ireland background: research has shown that both nursing students and registered nurses may lack sufficient knowledge and positive attitudes in order to care for the increasing age of their patients. it is suggested that the nursing population needs to become fully equipped to care for the specialist needs of older people (abendroth et al. ; kerridge ). methods: a small study was conducted in an irish university in order to explore the attitudes of student nurses towards older people both before and after theoretical education and clinical placement. kogans attitude towards ageing and older people scale (kaop) and pal- more’s facts on aging quiz (faq) were the quantitative data collection methods used. results: findings revealed that both theoretical education and clinical placement did not significantly increase nursing students’ knowledge or positive attitudes towards older people. findings were consistent with other international studies. conclusions: if international research findings have previously highlighted this as an issue then why does new research reveal that these issues still remain? the findings identify two key areas for development in nursing. firstly, the methods by which theoretical education is delivered in order to significantly increase nursing students knowledge about ageing. secondly, the quality of the clinical placement experiences which should aim to positively impact upon future career choices. gerontological nursing is an emerging specialty but perhaps the quality of the clinical and the- oretical experiences of nursing students will determine whether or not this specialty will be fully recognised by nursing boards and by registered nurses choosing this as a career pathway. the significance of these findings cannot be underestimated as the world population continues to live longer. references: . abendroth m, graven lj ( ) integrating care of older adults into the nursing curriculum: a case exemplar project. journal of nurse education. sep: ( ), – ir j med sci ( ) (suppl ):s –s s . kerridge, j.l. ( ) supporting student nurses on placement in nursing homes: the challenges for the link-tutor role. nurse education in practice. nov: ( ), – . psychology of ageing p modelling solé-padullés cognitive reserve questionnaire: construct validity and association with cognitive function lorraine boran , david delany , lisa mcgarrigle , terry mcelvaney , sean mccarthy , angela stewart dublin city university, dublin, ireland; waterford institute of technology, waterford, ireland; trinity college dublin, dublin, ireland background: various proxies have been shown to account for the brain’s ability to protect against acquired or progressive pathology, otherwise termed cognitive reserve (cr)—premorbid intelligence quotient (iq); executive function; processing resources; cumulative and current complex mental activities such education and occupation, social networks, cognitive, physical and social activities (satz et al. ). solé-padullés et al. ( ) developed a brief questionnaire to measure cr in both the healthy elderly, those with subjective memory loss or mild cognitive impairment. however, the construct validity of this questionnaire has not been established in a young to old healthy sample. the first aim of this study was to identify the underlying structure of the solé-padullés questionnaire. the second aim was to identify the relationship between cr, iq and executive function (ef). methods: analysis was conducted on data from a neurotypical irish sample (n = ; aged – ). the validity of the solé-padullés questionnaire was investigated. exploratory factor analysis or efa (ml extraction/orthogonal rotation) was performed and the predictive relationship between cr, iq and ef was also examined. results: results of the efa revealed a three-factor structure representing social activities, complex mental activities, and social economic status. conclusions: investigating the construct validity of the solé-padullés questionnaire has revealed an underlying three-factor structure. fur- ther research will involve multivariate modeling to investigate the predictive relationship between the latent cr construct, iq and ef. references: . satz p, cole ma, hardy dj, rassovsky y ( ) brain and cog- nitive reserve: mediator (s) and construct validity, a critique. j clin exp neuropsychol ( ): – . solé-padullés c, bartrés-faz d, junqué c, vendrell p, rami l, clemente ic, molinuevo jl ( ) brain structure and function related to cognitive reserve variables in normal aging, mild cognitive impair- ment and alzheimer’s disease. neurobiol aging ( ): – . p the distress management system for stroke, an approach for screening and managing psychological distress post-stroke nicola cogan, suzanne greene, aine connolly, ronan collins tallaght hospital, dublin, ireland background: the term ‘psychological distress’ has been proposed as a way to describe the range of emotional consequences following stroke. evidence suggests that mood disorders following stroke occur in – % of cases and impact on rehabilitation outcome, adjust- ment and quality of life. approximately % of stroke survivors experience anxiety post-stroke. methods: the distress management system (dms) (roth et al. ) was designed to assess psychological distress in individuals with cancer. the dms was modified as a pilot tool for use in stroke. stroke patients attending a follow up secondary prevention clinic with clinical nurse specialists in stroke (cnsp) on average weeks post-stroke completed the concerns checklist. the person is asked to indicate which of the problems has been a concern to them in the past week. the cnsp in stroke obtains an overall measure of distress as well as an indication of the current issues that are impacting on or causing the person’s distress. results: consistent with the literature patients reported no con- cerns or distress. of the remaining patients, % reported distress levels in the mild range while % were moderate. % received advice and psychologically based self-help material pertaining to managing symptoms. % received direct referral to psychology. % declined intervention. % reported that discussion about their concerns had relieved distress. conclusions: the modified distress management system is a poten- tially useful tool for nurses working in stroke settings. it is a brief tool that captures emotional concerns of stroke survivors & is acceptable to service users. further research is required to determine if the agreed cut off point indicating a need for referral to neuropsychology is clinically accurate and to determine the most beneficial timeframe to assess emotional responses and concerns post-stroke. p the influence of lifestyle factors on cognitive performance in irish adults aged and over c. hannigan , s. brennan , r. coen , i.h. robertson , b. lawlor neil (neuroenhancement for independent lives), trinity college institute of neuroscience, dublin, ireland; mercer’s institute for research on ageing, st. james’s hospital, dublin, ireland background: there is growing evidence to support the idea that potentially modifiable lifestyle and health factors are related to cog- nitive function in old age; and that these factors may influence both risk for cognitive decline, and the successful maintenance of brain health and cognitive function, as we get older (kramer et al. ; mangialasche et al. ). for example, engaging in negative health behaviours such as smoking, or low levels of physical activity, may result in an increased risk of cognitive decline among older adults. protective factors that have been suggested to promote successful maintenance of brain health include engagement in social and men- tally stimulating activities, high socioeconomic status, education and optimal levels of physical activity. we aim to build on the existing literature by investigating relationships between a range of lifestyle factors and cognitive performance among a large sample of normally ageing irish adults. methods: participants were normally ageing adults aged + (n = ) with a mean age of . years (sd . ). participants completed a comprehensive assessment battery including neuropsy- chological, cognitive, and psychological measurement tools, along with self-report questionnaires and scales to measure lifestyle factors that may be associated with the successful maintenance of cognitive function and brain health among older adults. results: cross-sectional analyses will be presented to examine the relationships between cognitive performance and various lifestyle factors, including physical activity, participation in mentally stimu- lating activity, health behaviours, social engagement, and socioeconomic status indicators. s ir j med sci ( ) (suppl ):s –s conclusions: implications of the findings in relation to future research and possible intervention strategies will be discussed. references: . mangialasche f, kivipelto m, solomon a, fratiglioni l ( ) dementia prevention: current epidemiological evidence and future perspective. alzheimer’s res ther ( ): – . kramer af, bherer l, colcombe sj, dong w, greenough wt ( ) environmental influences on cognitive and brain plasticity during aging. j gerontol med sci a( ): – p cognitive interventions for healthy older adults: a systematic review michelle kelly , david loughrey , brian lawlor , ian robertson , cathal walsh , sabina brennan the neil programme, trinity college institute of neuroscience, dublin, ireland; the department of statistics, trinity college dublin, dublin, ireland background: lifestyle interventions that might reduce the risk of cognitive decline have been gaining increasing interest. of these strategies, cognitive interventions are specifically targeted at improving cognitive performance. this systematic review and meta- analysis examines the impact of cognitive training and general mental stimulation on the cognitive and everyday functioning of healthy older adults without known cognitive impairment. methods: thirty-one randomised controlled trials (rcts) were included in the review. where meta-analysis was not possible, results were supplemented with a description of results from individual trials. primary outcomes of interest were cognitive and everyday functioning. a secondary outcome of interest was subjective measures of cognitive perfor- mance. we also examined transfer and maintenance of intervention effects, and the effect of training in group vs. individual settings. results: meta-analysis revealed that compared to active controls, cognitive training improved performance on measures of executive function (working memory, p = . ; processing speed, p \ . ) and composite measures of cognitive function (p = . ). com- pared to no intervention, cognitive training improved performance on measures of memory (face-name recall, p = . ; immediate recall, p = . ; paired associates, p = . ) and subjective cognitive function (p = . ). results on general mental stimulation were inconclusive. the impact of cognitive training on everyday func- tioning is largely under investigated. transfer and maintenance of intervention effects are most commonly reported when training is adaptive, with at least ten intervention sessions and a long-term fol- low-up. memory and subjective cognitive performance might be improved by training in group vs. individual settings. conclusions: more research is required to determine if general mental stimulation can benefit cognitive and everyday functioning. if cognitive interventions are to benefit everyday functioning, training should target improvements in executive function. standardised training protocols and outcome measures are required to allow for more pooling of homogenous data. p exercise interventions for healthy older adults: a systematic review michelle kelly, david loughrey, brian lawlor, ian robertson, cathal walsh, sabina brennan trinity college dublin, dublin, ireland background: data from epidemiological, cross-sectional, and neu- roimaging research show a relationship between higher levels of exercise and reduced risk of cognitive decline, but evidence from randomised controlled trials (rcts) is less consistent. this review examines the impact of aerobic exercise, resistance training, and tai chi on the cognitive function of older adults without known cognitive impairment. we investigate explanations for inconsistent results across trials and discrepancies between evidence from rcts and other research data. methods: twenty-five rcts were included in the review. meta- analyses compared exercise interventions to stretching/toning; no exercise; or no intervention controls. the primary outcome of interest was cognitive function divided into domains of memory and execu- tive function. secondary outcomes of interest were subjective cognitive performance and activities of daily living (adl’s). results: meta-analysis revealed significant improvements on mea- sures of reasoning (p \ . ) for resistance training compared to stretching/toning; and on measures of attention (p \ . ) and processing speed (p \ . ) for tai chi compared to ‘no exercise’ controls. there were no significant differences on any of the remaining comparisons. no data were available for subjective cognitive performance. one study reported data for everyday func- tioning and found significant improvements for resistance training vs. no exercise active control (p \ . ). conclusions: results should be interpreted with caution as differ- ences in study design and implementation contribute to discrepancies within the exercise research literature and inconsistent results across trials. interventions combining aerobic fitness with resistance training may be most beneficial for promoting healthy cognitive function for older adults. researchers should ensure that exercise interventions meet minimum requirements for duration and intensity, as recom- mended by public health authorities. standardisation of both exercise training and cognitive testing batteries is required to produce more comparable results across trials and to minimise discrepancies across the exercise research literature. p modeling cognitive reserve: investigating construct validity and the impact of age on model fit lisa mcgarrigle , lorraine boran , kate irving , martin van boxtel , frans verhey , sebastian kohler dublin city university, dublin, ireland; maastricht university, maastricht, the netherlands background: cognitive reserve, the brain’s capacity to cope with pathology in order to minimise symptomatology has been linked with differential susceptibility to age-related memory changes and dementia (crowe et al. ). models of cr have been challenged as explanatory constructs due to lack of evidence addressing the orga- nizational structure of proposed indicators. however, satz et al. ( ) have proposed a conceptual model of cr that is empirically testable. the a priori four-factor model is comprised of executive function (ef), processing resources (pr), complex mental activity (cma) and intelligence (‘‘g’’). the first aim of this study was to identify the underlying structure of the cr model in terms of con- vergent and discriminant validity. the secondary aims were confirming the underlying structure and identifying the effects of exclusion of the oldest cohort of participants on model fit. methods: analysis was conducted on data from the maastricht ageing study (maas), a -year follow-up study on cognitive ir j med sci ( ) (suppl ):s –s s ageing (n = ; aged – ). exploratory factor analysis (ml extraction/oblique rotation) was performed and confirmatory factor analysis (ml estimation) was conducted to confirm the factor struc- ture that emerged from the efa. analyses were repeated following exclusion of participants aged and older. results: results of the efa revealed a two-factor structure rep- resenting premorbid predicted ability and current cognitive function. results of the cfa supported this two-factor struc- ture. this suggests overlap and fluidity among the four proposed cr factors. subsequent exclusion of those aged + from the analyses resulted in a similar factor structure and improved model fit. conclusions: investigating the construct validity of a four-factor model of cr has elucidated the underlying structure of the hypothesized constructs. further research will involve multivariate modeling to investigate the predictive relationship between the two cr factors that emerged from this research and cognitive decline. p being with and being without: an ethnography of relating in dementia care kellie morrissey university college cork, cork city, ireland background: people with dementia living in long-term care are often characterised as passive receivers of care who are unable to participate in meaningful relationships; however, recent research has indicated that this may not be the case. the purpose of this research was to explore ways in which people with dementia living in care experience and participate both in the social sphere of their care setting and in personal relationships in that care setting. methods: this qualitative and longitudinal research utilised eth- nographic methods in order to gain an ‘insider’s view’ of life in a dedicated residential dementia care unit in the south of ireland. field notes and interview data were coded and analysed using a process of grounded theory as described by charmaz ( ). results: the results of this research describe three different ways in which people with dementia participate in relationships in care—( ) close and intimate participation in personal relationships—both existing and newly-formed, ( ) defining social groups along lines of ‘functionality’, status and gender, and ( ) ways of being with oth- ers—for example, adhering to extant social norms, or the employment of creative ‘resistance strategies’ against certain aspects of care. conclusions: in order to ameliorate care and services for those with dementia living in care, it is important to consider the ways in which their lives are affected by changes to, and participation within, their social environment. this research represents the first step in understanding the different ways in which participation in relationships is experienced by people with dementia living in care; running counter to common characterisations of those with dementia as disengaged and unsocial, these findings speak to a reconsidering of what is social and participative in dementia care. p individualised cognitive therapy through stimulation and individualised sims (sonas individual multi-sensory session) with long stay psychiatry of later life subjects who have cognitive impairment maryrose mulry , orla brady , michael o’cuill , geraldine kelly , agnes shiel national university of ireland, galway, galway, ireland; health service executive, mullingar, ireland background: a recent randomised controlled trial on cognitive stimulation therapy identified the need to evaluate its long-term benefits for people with cognitive impairment. previous studies have aimed to evaluate its benefits in a group setting. this study aims to evaluate the benefit of and the sustainability of individual cognitive intervention on people with cognitive impairment. method: a mixed case analysis comparing two groups; sonas indi- vidual multi-sensory session and individualised cognitive therapy through stimulation. participants were included and randomly assigned to an intervention group. the intervention comprised of sessions. assessment was carried out pre and post intervention with outcome measures used after each individual session. a -month follow up was conducted to explore sustainability. results: individualised cognitive stimulation therapy was found to be more effective than sims. however, both were identified to be of benefit cognitively as determined by scores on the standardised mini mental state examination (smmse) which had either been main- tained or improved in all participants. similarly other assessments and outcome measures used in the study maintained or improved their score with no cognitive decline detected. conclusion: the findings lend support that sims and individualised cognitive therapy through stimulation have beneficial and sustain- able effects as an individual intervention. p behavioural and non-cognitive symptoms of dementia in acute hospitals emma o’ shea , aoife barrett , edmund manning , vanessa browne , david william molloy , niamh o’ regan , suzanne cahill , john linehan , kathleen o’ sullivan , noel woods , david meagher , aoife ni chorcorain , suzanne timmons centre for gerontology and rehabilitation, school of medicine, university college cork, cork, ireland; dementia services information and development centre, st. james’s hospital, dublin, ireland; services for older people, hse, dublin, ireland; school of mathematical science, university college cork, cork, ireland; centre for social policy studies, university college cork, cork, ireland; department of psychiatry, university of limerick, limerick, ireland; cork university hospital, hse, cork, ireland background: research suggests that the majority of people with dementia will experience at least one behavioural symptom during their illness. acute hospitals pose particular challenges to the person with dementia and may precipitate responsive behaviours. this study s ir j med sci ( ) (suppl ):s –s therefore explored behaviours and non-cognitive symptoms associ- ated with dementia in older people admitted to hospital. method: patients years and older, admitted to public and private hospital, were screened within hours of admission, over a week period, and followed-up at fixed time points during admission, until discharge, or up to month of admission (cork dementia study). all patients (n = ) were assessed for dementia and a range of other variables including behaviour on admission, and reassessed at fixed time points. day-case admissions and actively dying patients were excluded. results: behaviour scores were significantly higher for those with dementia (n = ) than for controls (n = ). . % ( / ) of those with dementia exhibited at least one behavioural symptom. the most common symptoms were repeating questions/stories ( . %), frustration ( . %), agitation ( . %), and being withdrawn ( . %). the least common behaviours were sexually inappropriate behaviour ( . %) and aggression ( %). at least one-quarter of behaviours exhibited by dementia patients in hospital were chronic (consistent with behavioural and psychological symptoms of dementia, bpsd). a significant decrease in behaviour scores from baseline (prior to admission) to during the admission was found for those with dementia. age, cognitive score (standardised mmse), co- morbidities (cumulative illness rating scale-geriatrics), functional status (barthel index), and length of stay were significantly associated with behaviour scores. conclusion: results suggest that behavioural symptoms of dementia are extremely common in hospital, with over % experiencing at least one symptom. behaviours are likely aggravated by acute illness, peaking just prior to admission, and reducing as the illness is treated in hospital. p brief dementia screens in clinic: comparison of the quick mild cognitive impairment (qmci) screen and six item cognitive impairment test ( cit) rónán o’caoimh, william molloy centre for gerontology and rehabilitation, st. finbarr’s hospital, cork city, ireland background: short cognitive screens are required to identify cog- nitive impairment in busy hospital clinics. the six item cognitive impairment test ( cit) is a commonly used instrument with high accuracy at identifying dementia though its accuracy (cut-off c / for dementia) in those with mild cognitive impairment (mci) is less established. the quick mild cognitive impairment (qmci) screen accurately differentiates mci from normal cognition and dementia (cut-off [ / for cognitive impairment). methods: in all, paired assessments were available ( normal, mci and with dementia), from patients referred with memory loss to a university hospital memory clinic underwent a comprehen- sive assessment and were screened using the cit and qmci administered in alternative order, by trained raters, blind to the diagnosis. results: the median age of patients included was years (inter- quartile range – = ± ). ( %) were female. the median qmci score was / ( – = ± ) compared to / ( – = ± ) for the cit. the median qmci score for normal, mci and dementia was / ( – = ± ), / ( – ± ) and . / ( – = ± ) respectively compared to / ( – = ± ), / ( – = ± ) and / ( – = ± ) respectively for the cit. the qmci was more accurate than the cit in differentiating mci from normal, area under the curve (auc) of . vs. . . it also had superior accuracy in differentiating mci from dementia, auc of . vs. . . median administration times were . minutes for the qmci vs. . for the cit. conclusion: the qmci was more accurate than the cit, in patients referred for memory loss, particularly those with mci. the cit had a shorter administration time, suggesting it may be useful as a short screen when assessing patients with a high index of suspicion for dementia or monitoring progression of dementia over time. this study suggests that the cit is not useful in differentiating mci from normal cognition or dementia in clinic settings. p recommendations for incorporating lifelogging technologies into therapeutic approaches for people with dementia paulina piasek , alan smeaton , kate irving dublin city university, dublin, ireland; insight, dcu, dublin, ireland background: in the absence of a medical cure for memory loss new technologies specialised in pervasive imagining are being incorpo- rated to interventions for dementia. the practice of lifelogging is a digital capture of life experiences typically through mobile devices such as sensecam. the lightweight wearable digital camera passively captures about , images a day. lifelogging results in personal, recent prompts, potentially encouraging sharing of personal memo- ries. however, there is limited literature on the practical recommendations on how to use lifelogging devices and their effect on people with dementia (pwd). method: this research used exploratory and descriptive approach using the multiple case study method. the case study is a method of empirical inquiry that enables investigation of phenomenon within its real life context. purposive sampling was used to recruit three indi- viduals with early stage dementia. sensecam was used within a therapeutic approach, during which about . images were col- lected and reviewed. results: the results from this study indicate number of factors should be considered when using lifelogging technology with pwd. firstly the contextual factors of pwd including the level of cognitive impairment, existing coping mechanisms and the interaction patterns with the carer need to be considered. secondly the technology should be used within a therapeutic framework and tailored to suit the individual needs of pwd and carers. lastly the researcher should anticipate discussing intimate and unexpected details from the par- ticipant’s life and be prepared to deal with them in ethical and sensitive manner. implications of not working within these bound- aries show clear potential for risk of damaging human right and potentially the wellbeing of pwd. conclusions: practical recommendations for incorporating sense- cam into therapeutic approach for dementia are presented. while the research highlighted potential advantages of the new therapeutic approach it also demonstrated ethical risks, which require careful consideration in the context. ir j med sci ( ) (suppl ):s –s s p feasibility and validity of using cognitive training applications to assess cognition in community dwelling older people lorraine scanlon , emma o’shea , rónán o’caoimh , suzanne timmons school of medicine, university college cork, cork, ireland; centre for gerontology and rehabilitation, university college cork, st finbarr’s hospital, cork, ireland background: given the widespread availability of smartphone and tablets, and the popularity of ‘‘brain training’’ applications, we assessed the frequency and breadth of technology use by older community dwelling people; the ability of people with dementia to engage with a cognitive training (ct) application; and the relation- ship between ct scores and cognitive function/technology use. methods: technology use in community-dwelling older people attending the assessment and treatment centre (atc), as a patient or relative, was determined by a paper survey. an additional consecu- tively recruited atc patients with mild to moderate dementia were surveyed, then instructed how to use a tablet computer and complete three ct applications: a concentration task, memory task and visu- ospatial task. ct scores were correlated with demographics, questionnaire results and total montreal cognitive assessment (moca) scores. results: the survey-only cohort had a median age of years; % had third-level education. technology use varied by technology type: % used mobile phones, % any form of computer, and % a tablet computer. the dementia cohort (median age ; % third- level education) used less technology, , , and % respectively; and % rated their skills as ‘‘poor’’, vs. % of the survey-only cohort. total ct scores correlated moderately with the number of technologies used (r = . , p = . ), and strongly with total moca scores (r = . , p \ . ). correcting for frequency of technology use, ct scores were significantly predictive of moca scores. all three ct tasks were fully completed by % (n = ) of participants; % would use them again, and % found them ‘easy’. conclusion: despite the infrequent use of tablet computers by older people in general, and people with dementia rating their technology skills as poor, older people with mild to moderate can use ct applications and their scores reflect moca scores, regardless of technology use. p resilience in older age: living as married and with religious belief reduce the negative effect of increased disability on quality of life among older people in ireland eithne sexton , bellinda king-kallimanis , richard layte , anne hickey royal college of surgeons in ireland, dublin, ireland; tilda project, trinity college dublin, dublin, ireland; economic and social research institute, dublin, ireland background: theories of resilience suggest that older people main- tain well-being in the face of declining health by drawing on personal resources, such as personality or coping skills, and resources in their environment, such as support from friends and family. this paper tests whether social support, religiosity and personality modify the effect of increased disability on change in quality of life (qol) over a year period. methods: we used data from two waves of the irish longitudinal study of ageing (tilda), a population sample of adults aged + living in the community (n = , ). qol was measured with the two dimensions of the casp-r —control/autonomy (living your life the way you want to) and self-realisation/pleasure (purpose and enjoy- ment). increased disability was defined as an increase in the number of body function and activity deficits, based on the who icf framework. conditional regression was used to examine the effect of increased disability on change in qol over years, with interaction terms to examine moderating effects of social support from relatives, friends and spouse, personality traits of extraversion and neuroticism, and religiosity. results: two interaction effects were significant. living as married, regardless of marital quality, reduced the negative effect of increased disability on control/autonomy (- . for not married; - . for married; p = . ). religiosity reduced the effect of increased dis- ability on self-realisation/pleasure ( . for ‘‘religion very important’’, - . for ‘‘religion not/somewhat important’’; p = . ). conclusions: living with a partner may provide key instrumental support which is not available to those living alone or with non- partners, helping older people to maintain independence in increased disability. religious belief may reduce the importance of physical health to living a purposeful and fulfilling life. further research is required to examine how contextual and personal resources modify the effects of disability over a longer time period. social gerontology p nature and extent of elder abuse in ireland: examining role of primary care practitioners george bradshaw, claire o tuathail national university of ireland, galway, galway, ireland background: elder abuse is a complex and multifaceted issue and now a global and human rights concern. the majority of older people experiencing elder abuse live at home and the perpetrator is most likely to be a close family member or other relative. elder abuse affects approximately . % of the older population in ireland this means that there could be as many as , experiencing abuse. risk factors for elder abuse include poor physical and mental health. the aim of this paper is to critically examine the empirical literature to better understand the extent to which primary care professionals recognise and respond to elder abuse in their practice. methods: a carefully constructed search strategy was developed in order to identify key literature on the topic. the search strategy was applied to a number of electronic databases such as cinahl, med- line and pubmed. the empirical literature was analysed to identify key and recurrent themes. results: an analysis of the empirical literature identified the fol- lowing key themes: older people experiencing abuse are vulnerable because they are in need of primary care services. elder abuse has serious health concerns for older people and the consequences are devastating. primary care professionals are in a unique position to be able to recognise and respond to suspicions of abuse of older people in their care. however, empirical evidence suggests that variations in the practices of primary care professionals may hinder elder abuse detection. public health nurses are more likely to recognise elder abuse than general practitioners and the role of practice nurses was not identified in the literature. s ir j med sci ( ) (suppl ):s –s conclusions: there are issues regarding the extent to which primary care professionals have the knowledge and skill to recognise and respond to suspected cases of elder abuse in their practice. p attitudes to ageing and perceptions of working with older people of students of health and social care alice coffey , geraldine mccarthy , mark tyrell , catherine buckley , uta gaidys , julita sansoni , marjut arola , dagnija deimante-hartmane university college cork, cork, ireland, university of applied sciences, hamburg, germany, sapienza university of rome, italy, karelia university of applied sciences, joensuu, finland, rı̄ga stradiņš university liepāja branch, riga, latvia background: the european older people’s platform urged appro- priate training and education for all health and social care professions for work with older people. vanwinkle et al. ( , ) suggest that student’ perceptions of caring for older people are positively influ- enced by specific curricular content, a structured approach to the educational preparation and support for their practice. in this context the eu-funded project ellan ( – ) takes place with a consortium of partners from all over europe. methods: the aim of this study was to ascertain the attitudes towards ageing and views of working with older people among students of health and social care with european partners (ireland, germany, latvia, finland and italy). the objective was to compare results between groups of students and across the five countries. a descrip- tive correlational design was used. ethical approval was sought and granted from the local ethics committees in each of the partner countries. a convenience sample of students representative of health and social care professions in one university or institute of higher education in each country were invited to complete a survey including two questionnaires: the kogan attitudes to ageing ques- tionnaire (kops) (kogan ). students perception of working with older people revised (nolan et al. ). correlation analyses using the pearson product moment correlation coefficients were calculated to measure the relationship between variables. results: findings of this research will show that there is a correlation between attitudes and interest in working with older people. conclusions: this study highlights important issues that are relevant to researchers, curriculum developers and policy makers. the findings of this study will inform an agreed core european competencies framework for working with older people. p loneliness and older adults living in residential care: an exploration of the factors that may influence it siobhan clarke trinity college dublin, dublin, ireland background: there have been few national and international studies examining the phenomena of loneliness in older adults living in residential care settings. the main aim of this study was to explore total, social and emotional loneliness in older adults living in resi- dential care and the factors that influence it. methods: a quantitative, descriptive design using cross-sectional data collection was used and non-probability sampling was applied. the anonymous survey contained the validated de jong gierveld item loneliness scale and also included socio-demographic and loneliness related questions (gender, age, marital status, education, friends, par- ticipation in activities, prayer, children & grand-children, family & friend visits and responses to family & friends visits). percentages and means were used to describe the sample and loneliness and t-tests and anova to examine the influences on loneliness. results: from eight residential care settings long-term residents aged + years responded, a response rate of %. the mean age was years, the majority of respondents were female ( %) and widowed ( %). a total of %, showed a moderate or higher level of total loneliness. both the total and the subscale—social loneliness had a low mean score ( . , . respectively). the study found an association only between prayer and total loneliness (p = . ) and emotional loneliness (p = . ), and emotional loneliness and family visits (p \ . ). conclusions: while the findings from this study is in part consistent with previous studies and confirms older adults are socially embed- ded, prayer and family visits may be important for emotional attachment. health care staff should be aware of loneliness so a comprehensive assessment to plan appropriate interventions in which enable subjective attachment and social embeddeness to be realised for older adults living in residential care. further research is needed to explore what factors are contributing to loneliness in older adults in residential care. p home-care re-ablement services for improving and maintaining the functional independence of older adults: a cochrane review andy cochrane , sinead mcgilloway , mairead furlong , willie molloy , michael stevenson , michael donnelly department of psychology, national university of ireland maynooth, maynooth, ireland; centre of gerontology and rehabilitation, school of medicine, university college cork, cork, ireland; clinical research support centre, royal group of hospitals trust, belfast, uk; centre for public health, queen’s university, belfast, uk background: the cost of long-term care for people aged over years living in oecd countries is expected to double or even triple by . therefore, many developed countries have actively promoted a shift from residential to home-based care as a potentially more effective and financially sustainable approach to meeting the health and social care needs of older adults. importantly, most older people prefer to ‘‘age in place’’, and, therefore to remain in their own homes for as long as possible, provided they have appropriate levels of support to meet their (changing) needs. ‘re-ablement’ represents one innovative approach to home-care provision. the focus is on a re- orientation away from treating disease and creating dependency to maximising independence by offering intensive and time-limited (typically – weeks duration), multidisciplinary, person-centred, and goal-directed home-care services methods: a systematic review of randomised controlled trials, cluster randomised trials and quasi-randomised controlled trials of ‘re-ablement’ when compared to ‘usual domiciliary care’ or wait-list control group. the primary outcomes are: ( ) functional status including independent living, and ability to complete activities of daily living; and ( ) adverse events including mortality and hospital (re)admission. ir j med sci ( ) (suppl ):s –s s results: the preliminary results of the review, albeit with only a limited number of trials included for analysis, suggest that the intervention appears to reduce the need for ongoing social care. further analysis is ongoing. conclusions: whilst several previous cochrane reviews have exam- ined a range of home-based programmes, there has not as yet been a systematic review that has specifically focused on the effectiveness of ‘re-ablement’-based interventions. in the absence of appropriate evi- dence, important questions about the effectiveness and cost- effectiveness of these types of interventions remain unanswered. thus, this review will address an important gap in our knowledge. this review is supported by an hrb cochrane fellowship to the first author. p capturing the quality of death and dying in long term care (ltc) facilities: family perspectives una cronin, nicola cornally, alice coffey, eileen o’herlihy, edel daly, ciara mcglade, william molloy university college cork, cork, ireland background: the let me decide (lmd) advance care directive enables a person to record his/her healthcare wishes in advance so that they can be respected if he/she lacks decision making capacity in the future. our study: ‘systematic implementation of lmd advance care directive and comprehensive palliative care training programme in ltc’ aims to improve the quality of death and dying (qodd) and increase staff awareness of advance care planning. one objective was to determine relatives’ perceptions of quality of care at the end-of-life before and after comprehensive training. method: family members were invited to complete a retrospective questionnaire [(quality of dying & death (qodd)], to determine their perceptions of the quality of care received by their relative at end-of-life. twenty-two questionnaires were completed in three study sites by family of recently deceased residents. overall perceptions of quality of care was measured on a scale from to ( very poor and excellent). results: results showed that % (n = ) rated the overall quality of end-of-life care as excellent (score / ). however, % (n = ) indicated that end-of-life care wishes had not been discussed between the resident and doctor or other staff. nonetheless, the majority reported ( %, n = ) that staff provided end-of-life care that respected their relatives wishes. conclusion: initial results show that family members were very satisfied with end-of-life care received by their relatives. staff edu- cation on advance care planning was completed in each of the sites prior to data collection and this may have contributed to the positive results. however, discussions about resident wishes only happened in of cases. therefore, improvements in initiating conversations regarding care preferences at end-of-life and subsequent documen- tation are required. this is central to the lmd programme. p health care professionals’ perceptions of a connected health model for dementia denis curtin , sarah cosgrave , patrick slevin , dermot power , diarmuid o’shea ucd, dublin, ireland; st. vincent’s university hospital, dublin, ireland; mater misericordiae university hospital, dublin, ireland background: dementia care in ireland is fragmented and reac- tionary. there is good evidence that integrated care pathways improve efficiency and enhance inter-professional commitment to tailored care plans. connected health (ch) refers to a technology enabled model of healthcare delivery, designed around the patient’s needs, where health related data is shared between stakeholders in such a way that the patient can receive care in the most proactive and efficient manner possible. barriers to adoption of the ch model by health care professionals (hcp) include concerns about efficiency and usability. in this study, we examine hcp’s perception of a connected health model deployed for weeks for people with dementia. methods: general practitioners (gps) and consultant geriatricians were recruited and completed the technology acceptance model questionnaire post deployment. detailed semi-structured interviews involving both geriatricians and a subset of gps were conducted post deployment to investigate perceptions of the ch model. results: preliminary findings demonstrate hcps have positive per- ceptions regarding ease of use (usability/acceptance) of the ch portal; the benefits of connecting key stakeholders across primary and sec- ondary care settings; and the potential for ch to defragment the current services in dementia care. conclusion: these findings are significant and indicate support of this model of care for people with dementia amongst hcps in primary and secondary care. p caregivers’ perception of a connected health model for dementia care denis curtin , sarah cosgrave , patrick slevin , dermot power , diarmuid o’shea ucd, dublin, ireland; st. vincent’s university hospital, dublin, ireland; mater misericordiae university hospital, dublin, ireland background: caregivers of people with dementia are at an increased risk of a variety of health complications which increase the risk of hospitalization and early institutionalization for the person with dementia (pwd). connected health (ch), a technology enabled model of healthcare delivery, has the potential to support and empower caregivers by placing them and the pwd at the centre of this ch ecosystem. in this model, the key stakeholders—the patient and caregiver, general practitioner (gp) and geriatrician—are ‘con- nected’ by means of timely sharing and presentation of pertinent information regarding patient status on a secure internet portal. in this study, we examine caregiver perception of a connected health model following a week deployment. methods: people with mild dementia (mmse [ ), their care- givers, and their gps were recruited. following a comprehensive health assessment, a health portal was created that included past medical history and care plan for the pwd. this portal was accessible to the key stakeholders throughout the weeks. caregivers were requested to record the pwd’s blood pressure, weight and activity levels as well as report sleep quality, medication adherence and challenging behaviours. information regarding dementia, legal issues, entitlements and coping strategies were available on the portal and caregivers were encouraged to keep a journal. semi-structured interviews investigating the perceptions of all caregivers towards the ch model were conducted post-deployment. results: preliminary findings demonstrate predominately positive perceptions towards the ch model of care. positive perceptions regarding ease of use/acceptability of technology, satisfaction with model of care, increased levels of empowerment and dementia health literacy have emerged from data analysis. s ir j med sci ( ) (suppl ):s –s conclusion: findings thus far would suggest that caregivers of pwds have predominately positive perceptions of a ch model of care. this is a significant step in the adoption of a ch model for dementia care. p an exploration of the experiences of formal carers who participate in life story work with people with dementia in the residential care setting mary doyle peamount healthcare, dublin, ireland background: life story work (lsw) is a biographical approach to care that adds a depth of knowledge about the person with dementia’s past, values and beliefs, facilitating the delivery person-centred care. many care facilities in ireland fail to incorporate lsw in the assessment, planning and provision of care for residents with dementia. methods: a qualitative descriptive approach using semi-structured interviews was adopted for this study. eight formal carers described how life story work was utilised in a residential care setting during day to day care-giving. results: utilisation of lsw in practice facilitated the delivery of person- centred care that promoted the wellbeing of the person with dementia by relieving loneliness, reducing anxiety and agitation and promoting feelings of trust and security. both the nurses and healthcare assistants recognised that they had role in life story work, whether it was gathering, documenting or communicating the infor- mation. lsw promotes the building and strengthening of relationships for the person with dementia and their family carers with their formal carers. family carers are recognised as a source of life story information but, uniquely this study found that the friends of the person with dementia were an important source in life story work. this study acknowledges that the person with dementia, irrespective of com- munication difficulties can be assisted by formal carers to contribute to the gathering and sharing of their own life story. this study also provided insight into the effectiveness of com- mencing gathering life story information in the community prior to admission. conclusions: lsw may be helpful if incorporated in the assessment, planning and provision of person-centred care for people with dementia. residential services for people with dementia need to consider a staffing rota that ensures continuity to facilitate meaningful relationships for that the person with dementia and their formal carers. p combatting elder abuse: learning from each other/working together marita o’brien, naomi feely age action, dublin, ireland background: from to partner organisations from finland, ireland and italy participated in a european level project ‘wellbeing and dignity of older people, wedo’. the purpose of this project was to develop a lasting and growing european partnership of organisa- tions committed to working together to promote the wellbeing and dignity of vulnerable and disabled older people and prevent elder abuse through the promotion of quality long-term care. building on this work, these three countries, along with romania have come together to share knowledge, training materials and further develop existing tools to raise awareness about elder abuse. a common need of the partner organizations is to continuously find new knowledge and ways to educate, train and support local and national authorities, informal and professional carers and volunteers to protect older people from abuse, to empower older people themselves to take over their own lives and to create opportunities for their participation in society. methods: the work of the partnership organisations differs from each other to some extent. this enables us to take different and interesting angles to the prevention of elder abuse. the development of the training materials is undertaken through participation at transnational partner meetings, workshops, elder abuse campaigns and field visits. during the country workshops each partner presents the material, experiences and knowledge sharing these with a larger group of actors in the field. results: as we are at the mid-point of our project we will share our learning to date including case study examples of approaches taken in addressing elder abuse in each of the four areas. p informal carer perceptions of providing mealtime assistance to people with dysphagia in a long term residential care facility sinead keane , joseph yazbeck , julia o’rourke leopardstown park hospital, dublin, ireland; tallaght hospital, dublin, ireland background: incorporating family members and friends into dys- phagia care plans can empower and support them to take an active role in providing mealtime assistance to residents with dysphagia in long term care. however, while nursing and care staff are educated to identify indicators of aspiration, volunteers such as families and friends are oftentimes not. methods: a questionnaire was distributed to thirty residents with dysphagia and their informal carers, across six long term care units, at a single care of the elderly facility. thirteen questionnaires ( %) were completed. . % surveyed were female, . % male ( : ). relationships between the volun- teer assisting the resident with dysphagia were; daughter ( . %), wife ( . %), husband ( . %), female friend ( . %), son ( . %) and sister ( . %). the majority described the role as either ‘‘important’’ or ‘‘very important’’. % of the female population (daughters, friends and sisters) provided assistance on a weekly basis and % (wives) on a daily basis, % described their knowledge of dysphagia as ‘‘adequate’’, . % of males described their knowl- edge as ‘‘poor’’. results: . % of the respondents failed to demonstrate knowledge of modifications made to the resident’s fluid consistency. . % could not list any indicators of distress due to aspiration. % of females reported to be either ‘‘comfortable’’ or ‘‘very comfortable’’ providing mealtime assistance. % of females (wives) were ‘‘not comfortable’’ but reported the role was ‘‘very important’’ to them. male respondents were both ‘‘comfortable’’ ( . %) and ‘‘very comfortable’’ ( . %) providing mealtime assistance. conclusions: the majority of volunteers who provide mealtime assistance are family members, for whom the role is of significant importance. it is imperative that volunteers are continuously informed regarding food and fluid modifications and receive education to ir j med sci ( ) (suppl ):s –s s identify risk factors and indicators of aspiration. slt services should include family members, particularly spouses, in dysphagia sessions and care plan formation. p the role of driving for older adults in rural ireland mairead larkin, linda horgan ucc, cork, ireland background: it has been projected the number of older adults in ire- land is to increase by % by , (central statistics office ). little is known about the aging rural population in ireland and the unique challenges they may face. this study aims to explore the role driving plays in the participation in daily occupations for older adults in rural ireland. furthermore the study aims to establish the importance of maintaining driving skills for older adults in rural ireland. method: a qualitative study was conducted employing a descriptive phenomenological method to gain a rich and deep understanding of the lived experience of participants. data was gathered using indi- vidual semi-structured interviews. interviews were audiotaped, transcribed verbatim and subsequently analysed using thematic analysis. results: participants demonstrated a great dependency on their per- sonal vehicles. it was highlighted that their ability to drive provided independence and freedom. thematic analysis revealed four key themes that captured the diverse meaning of driving. the themes that arose were: freedom including independence and choice; social connectivity; adjustment; and cost. these themes are documented with direct quotes from the participants. conclusion: older adults in rural areas are solely reliant on their personal vehicles to access out of home activities. occupational therapists are uniquely placed as they acknowledge the value of par- ticipating in daily occupations as well as the impact of social isolation. occupational therapist need to address the occupation of driving as part of standard practice to prolong older adult’s ability to drive. recommendations for practice and future research are discussed. p implementing an age-friendly county programme: no easy job, a stakeholder’s perspective bernard mcdonald national university of ireland galway, galway, ireland background: in recent years developing age-friendly communities has become a significant issue for policy makers. the who published age- friendly cities guidelines in , and established the who global network of age-friendly cities in . age friendly ireland developed a national age friendly programme. however, we know little about the achievements of age-friendly community programmes (lui et al. ), and research is only just beginning to examine their implementation (fitzgerald and caro ). this paper contributes to emerging scientific debates by exploring the internal dynamics of the fingal age friendly county programme and by identifying the significant factors which have impacted on its implementation. fingal is affiliated to ireland’s national programme and belongs to the who global network. methods: adopting a qualitative case-study research design, in-depth interviews were held with three groups of stakeholders: eight mem- bers of the fingal age friendly county alliance, three key policy makers from ireland’s national programme, and three senior policy makers from the who initiative. results: stakeholders identify core elements for the successful implementation of age-friendly initiatives as including strong leader- ship, meaningful engagement of older adults, and effective political support at municipal level. success also requires effective planning mechanisms and a clear action focus. inter-agency collaboration is regarded as important but difficult to achieve. initiatives need to be flexible, adaptable to changing national and international strategic priorities, and able to address the diversity that exists among older people. involvement of the who and the national programme has facilitated implementation. conclusions: age-friendly programmes have the potential to improve older adults’ quality of life. this however depends on programmes having appropriate governance and implementation structures and pro- cesses, and the capacity to facilitate effective inter-agency collaboration and networking across projects. there is need for further research to explore programme implementation from the perspective of older people. references: . lui c-w, everingham j-a, warburton j, cuthill m, bartlett h ( ) what makes a community age-friendly: a review of international literature. australasian journal on ageing, ( ): - . fitzgerald, k.g. and f.g. caro ( ) an overview of age-friendly cities and communities around the world. journal of aging & social policy, : – . doi: . / . . . p exploring the perspectives and experiences of business managers when working with customers with dementia hannah murphy, jeanne jackson university college cork, cork, ireland background: with an aging population, the prevalence of dementia in society will increase. as more aging individuals wish to remain living in the community, services need to be adapted to facilitate the needs of individuals with dementia. businesses in the community need to be aware of how best to assist aging customers. there is a lack of research from business manager’s perspective of working with customers with dementia. therefore, it is crucial this perspective is understood in order to highlight areas that require development so services can be adapted to ensure individuals with dementia can remain active in the community, as long as possible. method: a qualitative study was completed using an explorative approach. six semi-structured interviews were completed with six participants and one focus group with four/six participants. interviews and the focus group were audio recorded and transcribed. thematic analysis was used analyse the data. combining multiple observers and data sources, peer review and using a variety of key informants from a variety of businesses ensured trustworthiness and credibility. results: four key themes emerged from the data including: under- standing dementia, commitment to customer care, conflicting feelings of business managers and forming dementia friendly communities. sub-themes were used to explore each theme in detail using direct quotes. overall findings highlighted the need for increased awareness surrounding the disease and showed the willingness of businesses to understand more about the disease due to their commitment to cus- tomer care. businesses are aware of the importance of forming dementia friendly communities but it is important the needs and concerns of businesses are recognised. s ir j med sci ( ) (suppl ):s –s http://dx.doi.org/ . / . . conclusion: this study identified the importance of working with businesses during the process of forming dementia friendly commu- nities. increased training and education is required surrounding dementia to aid the formation of adapted services and to reduce stigma associated with dementia. p an audit of the plate pal volunteer programme in a long term care nursing unit for older persons ciara murphy , rosanne staveley raheny community nursing unit, raheny, dublin, ireland; beaumont hospital, beaumont, dublin, ireland background: poor appetite and difficulty with eating and drinking are problems faced by many older people in long term residential care (furman ). feelings of loneliness and helplessness can be a common theme within this population group. the plate pal volunteer service provides one-on-one companionship to residents at mealtimes. they can provide assistance and gentle reminders to eat, provide company and stimulating conversation for residents. the plate pal programme commenced in the nursing unit in june on a phased basis. a total of volunteers visit. the dietician and speech and language therapist carried out an audit to measure the volunteer’s experiences so far and help identify areas for service enhancement. methods: plate pal volunteers were asked to complete a -ques- tion questionnaire using the likert rating scale, with being ‘‘i disagree’’ and being ‘‘i agree’’. the questions aimed to measure the volunteers’ overall experience including satisfaction, support, relationships with staff and residents, and confidence. results: eight of eleven questionnaires were returned. of those, % of volunteers strongly agreed that they feel supported by staff in the nursing home. % of volunteers strongly agreed that they find the volunteer experience rewarding. % strongly agree that they feel confident as a plate pal volunteer. % of volunteers felt strongly that contact with other volunteers within the nursing home was important. % of plate pals felt strongly that they had developed a good relationship with their resident, % were unsure and % did not comment. conclusion: overall the plate pal volunteers report to have a positive experience in the nursing home and find their service very rewarding. the feedback will help develop and improve our services to residents in our nursing unit. reference: . furman ef ( ) undernutrition in older adults across the continuum of care. j gerontol nurs ( ): – p withdrawn p ‘double edged sword’: perceptions of nurses to the introduction of pet therapy for older people with an intellectual disability phil noone, ann marie scahill national university of ireland, galway, galway, ireland background: the introduction of pet therapy in learning disability is recognised as having the potential to enhance the quality of life for clients and create a more ‘home- like’ atmosphere. yet, information gaps exist in relation to how nursing staff perceive the introduction of such a new initiative and the challenges they face prior to and during its implementation. methods: qualitative interviews were conducted with a purposeful sample of eight registered staff nurses who were working in long- term residential service for people with learning disability. using thematic analysis, participants illustrated their responses with examples from their personal lives and previous work practice settings. results: whilst recognising pet therapy as having many physical, psychological and social therapeutic benefits for clients, its proposed introduction was viewed as a ‘double edged sword’ with positive and negative implications for staff. conclusions: the introduction of pet therapy for older people with learning disability needs to be carefully planned and managed, taking into account the views and concerns of staff within the residential care unit. the involvement of service users and their families was high- lighted as key to the successful planning and introduction of pet therapy. finally, within the current constraints and cutbacks experi- enced within the learning disability services and consequently a reduction in social outings for residents, this initiative was perceived by nursing staff as a mainly positive step in creating a ‘home’ for older residents. p an exploration of older adults’ internet use in an irish context niamh lane, clare o’sullivan university college cork, cork, ireland background: the internet is one of the most beneficial and applicable computer applications (white et al. ) and it enables older adults to stay in constant communication with others and maintain social contact (cotton et al. ). thus, health care professionals need to be familiar with and competent in enabling people through this medium. this research study aimed to explore the experience of older adults’ use of the internet in an irish context. method: a qualitative study using a phenomenological approach was conducted. six participants aged – were interviewed. interviews were audiotaped, transcribed, analysed, categorised and themed. results: four themes emerged: ( ) the internet is a beneficial, pur- poseful but sometimes frustrating and fearful tool for participation in activities; ( ) internet use is a post-retirement activity integrated into a daily routine ( ) the internet is largely used for interpersonal contact and ( ) the internet is also a method of social and leisure participation. conclusion: it is evident that the internet is a meaningful activity for people over the age of and they benefit from using the internet for many purposes. however, internet use can also be a cause for frus- tration and fear. internet use is a significant post retirement activity, integrated into daily routines. it enables participation in social and leisure activities as well as interpersonal and social engagement. these findings have implications for healthcare professionals in clinical practice, research and education. practitioners need to be prepared to facilitate, support and assist older adults’ engagement in internet use. ir j med sci ( ) (suppl ):s –s s p exploring the impact of frailty on the health and social care system in ireland lorna roe , aisling o’halloran , charles normand centre for health policy and management, trinity college dublin, dublin, ireland; the longitudinal study on ageing, trinity college dublin, dublin, ireland background: the challenge of healthy ageing today includes man- aging combinations of chronic disease, age related conditions, functional limitations and social or personal challenges. these needs are often referred in the gerontological and health sciences literature as ‘complex needs’ with multiple interacting problems. this study examines the population with complex needs, through the lens of the frail population in ireland. people who are frail are more at-risk of functional and cognitive decline and vulnerable to using hospital and nursing home services than the non-frail population. this study examined the impact of frailty on irish health and social care utilisation. methods: secondary analyses were performed using data from the first wave of the irish longitudinal study on ageing. , partici- pants (mean age ; % female) representative of the community- living population aged ? years in ireland. phenotype frailty was classified using the five criteria: low gait speed, low grip strength, unintentional weight loss, exhaustion, and low physical activity. scores c , – , and indicated that participants were frail, pre-frail, and non-frail, respectively. data on healthcare utilisation included hospital, primary care, allied health and home based service use. descriptive statistics and regression analyses were employed to examine the relationships between healthcare use and frailty status. results: this study builds on the findings from previous work that demonstrates the importance of concepts of need in both explaining patterns in service utilisation and variance in response to need (murphy ). our preliminary findings demonstrate the usefulness of examining the impact of frailty on the whole system of care. conclusion: the exploration of service utilisation by frail popula- tions tells an important story in understanding how irish older people manage the challenge of frailty. references: . murphy c ( ) the distribution and determinants of home-based social care utilisation in older people: irish and comparative per- spectives., trinity college dublin p a review of integrated care mechanisms used to better coordinate care across sectors for community-dwelling frail older people lorna roe, charles normand centre for health policy and management, trinity college dublin, dublin, ireland background: integrated care is a contemporary strategy for the irish healthcare system. internationally, much of the empirical work has examined the cost-effectiveness of integrated care interventions (icis). there is a gap in the literature in describing how these inter- ventions function. methods: the authors examined the literature systematically by searching key electronic databases using search terms ‘care coordi- nation frail older people’, ‘integrated care frail older people’ and ‘case management frail older people’, and hand searching high-yield journals. literature was reviewed using the care coordination mea- sure mapping table (mcdonald et al. ). results: seventeen interventions were examined from europe, north america, australia and asia. in all icis new work processes were designed to enhance communication between providers and older people such as multidisciplinary care planning and components to facilitate communication such as electronic health records. however, the analysis was severely constrained by the lack of detailed description. consequently these interventions remain ‘a black box’; we know some models produce good patient outcomes, but we do not know the exact mechanisms by which they achieve this. conclusion: while we can discuss integrated care at a theoretical level, describing it in reality is difficult due to insufficient data linking mechanisms to outcomes. this is problematic and limits our ability to distinguish poorly functioning mechanisms from mechanisms which have failed to be implemented. consequently it is difficult to trust we are replicating the right mechanisms elsewhere and that we fully understand the influence of the context. overall, this is a good lesson for the irish system to develop frameworks to usefully describe the intended design and actual implementation of icis so we can understand the outcomes we see down the road. references: . mcdonald km et al care coordination atlas version in ahrq publication no. - -ef , agency for healthcare research and quality: rockville p how a night nursing service supports older people to die at home deirdre shanagher, marie lynch, carmel collins irish hospice foundation, dublin, ireland background: since , funding has been provided for people with diseases other than cancer to receive a night nursing service to support them to die at home. this work outlines a year review of this service with a focus applied to those over the age of . this work aims to outline the demand and delivery of the service and the ill- nesses older people are dying with. methods: this is a quantitative piece of work that analyses data gathered from applications made to a night nursing service. statistical analysis was applied to applications made for people over the age of for the years – inclusive. results: the demand for this service has doubled from referrals in to in . using the national council for palliative care (uk) classification of illnesses it was found that the majority of people using this service are dying at home with heart failure and respiratory illnesses. the numbers of people dying with dementia have increased significantly, from in to in . gender differences have been noted in those dying with dementia and respiratory illnesses with the numbers of women dying with these illnesses increasing steadily. conclusion: the growth in this service coincides with increasing emphasis from irish health policy for people to be cared for in their own home (doh ). as people are living longer, it is certain that the demand for this service will continue to grow. this work outlines inequity that exists across the country when accessing this night nursing service. more research is required to understand variances and to support the night nursing services to be incorporated into health care planning so that more older people will be able to die in the place of their choosing. s ir j med sci ( ) (suppl ):s –s p the key to meaningful ageing in residential care claire welford mowlam healthcare, ireland background: the hiqa quality standards for residential care for older people in ireland recommend that the residents care plan should meet each resident’s assessed needs which are set out in an individual care plan, developed and agreed with each resident, or in the case of a resident with cognitive impairment with his/her representative. this poses a challenge for nurses as many are only familiar with care planning in the acute hospital setting rather than in the residential care setting. methods: this paper describes the design, development and imple- mentation of a new approach to care planning for older people in residential care. this change project was undertaken by the largest national private provider of residential care in ireland. results: several key differences between acute patients care planning and gerontological residents care planning were delineated. geron- tological care planning uses an additional re-check step in the nursing process. acute care planning centres upon patients problems whilst gerontological care planning centres upon residents’ needs. acute care planning focuses on nursing interventions while gerontological care planning focuses on residents’ actual and potential needs. acute care plans are nurse dominant whilst gerontological care plans are resident dominant. acute care plans adopt a clinical writing style whilst gerontological care plans adopt a narrative and biographical style. finally, acute care plans are often pre-prepared whilst geron- tological care plans are individually prepared. conclusions: this new approach to care planning is now fully implemented. this project has significant impact for older people who must have their autonomy, dignity and personhood maintained amidst their physical and cognitive decline. ir j med sci ( ) (suppl ):s –s s 	 nd annual and scientific meeting science for healthy &amp; active ageing 
 	platform presentations 	o acute post-stroke blood pressure relative to pre-morbid levels in intracerebral haemorrhage versus major ischaemic stroke: population-based study 	o high prevalence of atrial fibrillation in acute stroke in a rural population 	o the management of atrial fibrillation and the use of oral anticoagulation for stroke prevention in long-term care 	o an investigation of the relationship between orthostatic blood pressure recovery patterns and visual function 	o stroke awareness before, during and after the irish national stroke awareness ‘‘fast’’ campaign 	o the month journey of thrombolysis in a university hospital 	o stroke thrombolysis in older adults attending a university hospital: audit of results between -- . has the f.a.s.t campaign improved delivery in clinical practice? 	o the changing physical health of the over- s ( -- ): findings from the irish longitudinal study on ageing 	o mapping health services to meet the needs of an ageing community: the local asset mapping project (lamp) 	o constructing home over the life course: toward a model of at-oneness 	o socioeconomic deprivation and risk of age-related cognitive dysfunction in older irish adults 	o irish national dementia educational needs analysis 	o mapping an integrated dementia care pathway 	o older prisoners in ireland: policy implications of a growing cohort 	o a hard pill to swallow? assessment of swallow function following an acute stroke 	o physical and psychosocial adjustment post-stroke 	o facilitators and barriers of getting back to active living post-stroke: results of a national survey 	o frailty and disability across the north and south of ireland: a data harmonisation study 	o the impact of frailty on post-acute rehabilitation outcomes in older adults 	o frailty and its association with rehabilitation outcomes: a prospective cohort study of a post-acute frail older population 	o prediction of fracture leading to hospital admission in community dwelling older adults 	o an exploratory study of club-based sports participation by older people in ireland, australia and japan 	o ‘‘words open windows’’: older women’s experiences of adult literacy services 	o exploring perceptions of ageing and health amongst mid-life women in connemara 	o attitudes of first year medical students to ageing and to older people 	o food enjoyment is associated with nutritional status among irish older adults living alone 	o risk instrument for screening in the community (risc): predicting adverse outcomes in older adults 	o do we tell gps what they need to know? a quality assessment review of gp correspondence from a medicine for the elderly outpatient clinic 	o the irish hip fracture database: results from the preliminary report 	o human factors and affinity: national falls prevention and bone health project 	o alert chart-improving communication within the mdt & reducing risk of falls 	o resource utilisation in older patients presenting with falls to the emergency room 	o is low skeletal muscle mass synonymous with sarcopenia? 	o making it better or worse? organisational influences on person-centred care 	o using ‘‘communication ramps’’ to enable participation in a survey and increase response rate 	o dysphagia and pneumonia in nursing home residents: which side are you on? 	o multidisciplinary team (mdt) approach in healing a grade four pressure ulcer in an octogenarian patient with end stage dementia 	o the use of adjunct therapies for chronic wound management in older adults in a teaching hospital 	o irish national audit of dementia care in acute hospitals 	o changing patient demographics and diagnostic profiles attending a national memory clinic: a retrospective review 	o audit of early clinical diagnosis of dementia incorporating fdgpetct scanning 	o opinions towards a consensus on use of medications in advanced dementia 	o acute dementia care: a review of hospital activity attributable to the care of patients with dementia 	o dementia’s influence on hospital length of stay of older people may be overstated and mainly relates to delays in discharge to long-term care 	o end of life dementia care in acute hospitals 	o environmental risk factors for cognitive ageing: geographical location, social engagement and lifestyle 	marica cassarino , vincent o’sullivan , rose anne kenny , annalisa setti 	o negative perceptions of ageing predict longitudinal decline in executive function 	o cognitive screening tests need to be adjusted for age and education in patients presenting with symptomatic memory loss 	rónán o’caoimh , yang gao , paul gallagher , joseph eustace , william molloy 	o delayed recovery of blood pressure after orthostasis in individuals with supine hypertension is associated with poorer global cognition at -year follow-up in a sample of community dwelling older adults 	o b-vitamin status in relation to cognitive decline over years in healthy older adults 	o is there a cognitive prodrome to delirium? 	o baseline predictors of delirium in medical inpatients 	o the impact of the national clinical programme for older people on older re-attenders to the emergency department 	o characteristics and outcomes of older patients attending an acute medical assessment unit 	o symptom presentation in myocardial infarction (mi) patients: a regression model exploring if it is different in the aged 	o the utility of fdg pet brain in the diagnosis of neurodegenerative conditions 	o an audit of elderly hospitalised patients’ attitudes and understanding of pain 	o occult complexities in geriatric inpatient consultations 	o smoking prevalence in an elderly inpatient population 	o the experiences of family caregiving: making sense of dementia from both cared for and caregiver perspectives 	o the impact of caring for spouses on depression and health behaviours in over s in ireland, the irish longitudinal study on ageing 	o carer burden and potentially harmful behaviours engaged in by carers of older people: results of a national survey 	o survey of healthcare workers suggests unmet palliative care needs in parkinson’s disease 	o factors associated with place of death among older irish adults: results from the irish longitudinal study on ageing 	o the influence of dementia on one-year mortality following hospital admission, and place and cause of death 	o dying to talk: initiating end of life care discussions with people who have dementia 	posters 	p a prospective study of mortality in the trinity university of ulster and department of agriculture (tuda) cohort 	p limb--shaking transient ischaemic attacks 	p combining the active stand test and pattern recognition enables vasovagal syncope prediction 	p a cross-sectional assessment of vascular health and orthostatic blood pressure fluctuation in older adults without vascular comorbidity 	p is short-duration orthostatic bp decay in asymptomatic older adults associated with cerebral hypoperfusion? 	p ambulatory blood pressure variables in the older irish adult: apsi study 	p prospective characterisation of body composition after a short-term training programme using dual-energy x-ray absorptiometry in an active rehabilitation unit 	p single institution functional imaging in aiding diagnosis and communication in people presenting with memory problems 	p zoledronic acid for osteoporosis in an ever-ageing population, who should we be treating? 	p intravenous stroke thrombolysis and antiplatelet timing (iv stat) audit 	p are elderly patients with complex needs accessing comprehensive geriatric assessment and mdt input in our current amu admission service? 	p assessment of falls risk within the medical admission unit 	p the role of crp in acute hip fracture surgery 	p think delirium, write delirium, treat delirium! an e-learning collaboration to improve detection, diagnosis and management of delirium 	p a consecutive cohort study of short cognitive tests to screen for dementia in older people on admission to hospital: the temporal orientation score and the -item cognitive impairment test 	p bisphosphonate related osteonecrosis of the jaws in the osteoporotic patient 	p the effect of a balance exercise class on activity limitations in people with parkinson’s disease 	p fuse: falls and unexplained syncope in the elderly, the utility of implantable loop recorders 	p the prevalence of gait disorders and stravinsky syndrome in an age-related day hospital 	p the effect of a national awareness campaign on knowledge of atrial fibrillation in the irish population 	p admission hyperglycaemia predicts outcomes in acute stroke 	p potentially inappropriate medications in older hospitalised patients 	p ageism in parkinson’s disease studies 	p a review of acute orthopaedic admissions in older patients 	p preliminary hip fracture outcome data in different cohorts of patients 	p rehabilitation of pelvic fractures 	p attitudes to importance of outcome measures in cardiovascular prevention trials 	p audit of stroke management at a university teaching hospital 	p access to neuroimaging in dementia: a survey of specialists 	p is the mini-mental state examination on admission to an active rehabilitation unit beneficial in predicting duration of stay and discharge options? 	p medical and surgical comorbidities on admission to an active rehabilitation unit 	p effect of a multifaceted intervention on potentially inappropriate prescribing in older patients in primary care: a cluster randomised controlled trial (the opti-script study) 	p too much, too late: polypharmacy at end-of-life 	p the benefits of a nurse-led secondary prevention clinic in a stroke service 	p neuromedical sequelae post-stroke 	p management of older ambulatory patients with chronic heart failure: are we ‘rate aware’? 	p how are we doing with our zzzs? a cross-sectional study of sleep hygiene and falls risk in an acute hospital setting 	p co-prescription of laxative and opioids: a cross sectional study 	p the concurrent validity of the -item bbs p with other clinical measures of balance in the community-dwelling elderly 	p cost effectiveness of inpatient rehabilitation in brain injury patients 	p do not attempt resuscitation (dnar) documentation: does it comply with recommendations of the national consent policy? 	p troponin i is a predictor of delayed detection of atrial fibrillation in ischaemic stroke and tia 	p investigation of equal responsiveness of two frailty outcome measures within a day hospital setting and useability of both measures 	p screening of osteoporosis treatment in patients presenting with fragility fractures in a geriatric active rehab unit 	p assessing the anticholinergic burden in a geriatric active rehabilitation unit 	p the effect of the introduction of a tobacco-free hospital policy on documentation of smoking status and prescription of nicotine replacement therapy (nrt) 	p an investigation of factors which predict acute short-term functional outcomes in older adults following hip replacement surgery 	p post-stroke fatigue: an emerging condition, a review of the literature 	p risk factors for falls occurring during hospital stay 	p a study of warfarin control and potential suitability for switching to alternative oral anticoagulant agents in a geriatric day hospital setting 	p reduced gait speed in community-dwelling adults with atrial fibrillation 	p do self-reported sensory deficits predict recurrent falls over two years? 	p appropriate use of urinary catheters and documentation in the geriatric population 	p outcomes of patients following attendance at a geriatric day hospital: one-year prospective cohort study 	p the prevalence of anaemia in a geriatric day hospital cohort 	p a study of body mass index change in hospitalised geriatric patients in an active rehabilitation unit 	p impact of season, weekends and bank holidays on transfer of nursing home residents to emergency department 	p impact of a cns for frail older adults on a geriatric consult service in a tertiary academic teaching hospital 	p significant fall reduction: the effectiveness of an interdisciplinary falls group in a residential centre for people ageing with intellectual disabilities 	p the pivotal role of the assessment and treatment centre/day hospital in optimizing health, function and wellness in older adults 	p evaluation of stroke recovery post discharge from a stroke rehabilitation unit 	p an investigation of vitamin d status and supplementation in a predominantly elderly east galway population 	p the first months of a newly established active rehabilitation unit for the frail and elderly: a retrospective review 	p an assessment of the age adjusted charlson’s comorbidity index on deaths in an active rehabilitation unit 	p an assessment of the charlson comorbidity index on a patient population on an active rehabilitation ward 	p views and experiences of irish healthcare workers on the delivery of palliative care to people with parkinson’s disease: a qualitative analysis 	p are newly established nursing homes more likely to transfer their acutely ill residents to our hospitals? 	p simulation-based multi-disciplinary team training: does it enhance care quality for older people? 	p bon appetite: improving the mealtime experience of residents in long-term mental health units through education and training 	p bmi as a predictor of mortality risk in older persons: the dublin outcome study 	p the importance of follow up ambulatory blood pressure in older adults 	p a review of anticoagulation in geriatric day hospital setting 	p acute stroke care audit in connolly hospital ( ) 	p cerebral amyloid angiopathy presenting as fast: positive acute stroke 	p nurse-led warfarin clinic proving to be effective in maintaining patients within therapeutic inr range 	p stroke syndromes: are we lost for words? 	p withdrawn 	p acute stroke calls to dublin fire brigade ambulance service -- 	p a clinical audit to evaluate the efficacy of an active physiotherapy service in a cohort of elderly parkinson’s disease patients in an inpatient rehabilitation setting 	p the use of hour holter monitor and echocardiogram in the investigation of acute ischaemic stroke 	p adherence to esh/esc guidelines for management of hypertension in older adults in a nursing home population 	p use of oral antihypertensives in frail nursing home residents 	p the barriers to diagnosing dementia in primary care: a qualitative gp registrar perspective 	p to resus or not to resus? a month cross section view of in-patient resuscitation outcomes in an aged population 	p audit: prevalence of proton pump inhibitor use in acute medical and surgical in patients 	p assessment of functional capacity in metabolically healthy obese older adults 	p aetiology of acute stroke presentations to a hospital 	p atrial fibrillation: a preventable cause of ischaemic stroke 	p the relationship between cardiac health and physical activity levels in older adults 	p delirium prevalence in older persons attending an irish acute medical unit 	p identification of cognitive impairment and dementia in older persons in the acute medical setting 	p clinical experience of denosumab at a specialist bone health unit 	p a study of patients with bilateral colles fractures attending a specialist bone health clinic 	p vitamin d in acute hip fracture 	p setting our goals on a gerontological rehabilitation unit from a nursing perspective 	p mortality rate and associated factors in older adults following hip fracture 	p non-attendance at a bone health clinic following hip fracture 	p recording patient identification data on geriatric wards 	p the nursing home conundrum: a model for prospective interdisciplinary care 	p patient activity in a nurse-led clinic: active stand tests in a dedicated falls service 	p a retrospective review of the cognitive profile of post-stroke patients within an acute irish setting over a six-month period 	p cognitive frailty in older irish adults 	p the development of a functional balance re-education class in a gerontological rehabilitation unit 	p comparative accuracy of motion sensors for frail-older hospitalised patients 	p validation of the picture naming task from the nih stroke scale for an irish population 	p documentation of resuscitation status: an audit of current practice in an acute hospital 	p an audit of the physiotherapy stroke service at a model hospital in dublin 	p an occupational therapy led memory health group for community-dwelling older adults in a community reablement unit: evaluation and vision 	p improving the management of gentamicin in older patients in an acute hospital setting 	p development of an orthogeriatric service in an irish tertiary referral hospital 	p clinical audit of bone health in hiv positive patients over years of age 	p the factors associated with the use of assistive technology among community dwelling individuals diagnosed with multiple sclerosis 	p occupational therapy effectively providing holistic care in a frail elderly active rehabilitation unit (aru) 	p a study of the inter-rater reliability, feasibility and validity of the cognitive vital sign (cvs) screening tool 	p the introduction of an interdisciplinary quality improvement forum within a new gerontological rehabilitation unit 	p three year audit of prevalence and management of atrial fibrillation post-stroke in an acute hospital 	p cerebral small vessel disease (csvd) in very old patients 	p taking the service to the community-geriatrician-primary care liaison service 	p cough ‘til you drop 	p a retrospective review of the ot (occupational therapy) off road driving assessment pathway in a day hospital setting 	p outcomes of a multi-disciplinary rehabilitation consultation team 	p outcomes of occupational therapy interventions within a stroke early supported discharge (esd) service; a month retrospective clinical audit 	p bleeding obvious: the hazard of prescribing warfarin to the colour blind 	p the use of antipsychotics for dementia in acute hospitals 	p one year outcomes in stroke patients treated with iv thrombolysis 	p polypharmacy and proton pump inhibitor prescribing in older patients 	p audit of drug kardex’s in older patients 	p the use of ct perfusion in the assessment of older adults presenting with acute ischaemic stroke 	p comparing subjective and objective measures of frailty using the deficit accumulation approach 	p classifying age-related health deficits: a latent class analysis 	p anticholinergic burden in older adults with intellectual disability; relationships with multimorbidity and adverse effects 	p invisible policies: a scoping literature review of wheelchair and seating provision for older people in irish nursing home settings 	p frailty as a marker of premature biological ageing: preliminary evidence from the irish longitudinal study of ageing (tilda) and a community-based methadone treatment program 	p the relationship between frailty and the timed up and go in a post-acute rehabilitation unit 	p behavioural features of impending delirium 	p scoring frailty in acute medical patients 	p an audit of the use of psychotropics in an extended care setting 	p towards a profile of dementia risk and online supports for dementia risk reduction: translating findings from a robust model based on modifiable risk factors 	p an alternative home-based, electronically monitored model of interim care (ic) 	p an unusual cause of arm weakness: ‘‘don’t let the cat out of the bag’’ 	p denosumab continuation in the primary care setting; is cost contributing to decreased compliance? 	p frailty in older patients discharged from a general hospital 	p an audit of the prevalence of pain and its management in elderly hospitalised patients 	p can we utilise hospital readmission rates as a key performance indicator? 	p an audit of the quality of nursing home referral letters to the emergency department in patients requiring medical admission 	p a collaborative approach to falls prevention and management through action research 	p communication of confirmed diagnoses of dementia and delirium between hospital and general practitioners 	p acute stroke admissions to a model- hospital: analysis of atrial fibrillation and anticoagulation status 	p implementation of a dedicated orthogeriatric service saves the hse a million euro 	p nursing versus consultant led rehabilitation: a review post change of service 	p the establishment of an orthogeriatric service improves patient outcomes following a hip fracture 	p an interdisciplinary stroke rehabilitation service in a county hospital: overview of the past years 	p retrospective cohort study of a county hospital stroke patients: demographics and risk factors 	p the feasibility of a prescribed aerobic training programme in a sub-acute stroke population in a rehabilitation unit 	p extended zoledronic acid treatment in older patients with osteoporosis 	p patient profile, length of stay, cognitive impairment and elderly mobility scale scores in patients over years admitted to a major trauma hospital post femoral fracture 	p analysis of acute ischaemic stroke presentations 	p limiting factors to thrombolysis for acute stroke 	p head up tilt table testing (hutt) for transient loss of consciousness (tloc): are referrals appropriate and do they concur with european society of cardiology (esc) guidance? can we identify areas where a specific referral form would improve appropriateness and patient safety? 	p staff attitudes to the seasonal influenza vaccination programme 	p the impact of a regular multidisciplinary medication review on polypharmacy and psychotropic prescribing in care home residents: a follow-up study 	p a feedback survey of gps on a comprehensive multidisciplinary discharge summary sent out on patients discharged from an offsite rehabilitation unit 	p a high uptake of the influenza vaccine by staff has a positive outcome for residents in long term care facilities: an observational audit 	p a multi-disciplinary quality improvement initiative for a pre-prosthetic amputee rehabilitation pathway in a gerontological post-acute rehabilitation unit 	p time spent in physiotherapy in an acute stroke unit: is it enough? 	p challenges for gerontological nurse education and practice 	p modelling solé-padullés cognitive reserve questionnaire: construct validity and association with cognitive function 	p the distress management system for stroke, an approach for screening and managing psychological distress post-stroke 	p the influence of lifestyle factors on cognitive performance in irish adults aged and over 	p cognitive interventions for healthy older adults: a systematic review 	p exercise interventions for healthy older adults: a systematic review 	p modeling cognitive reserve: investigating construct validity and the impact of age on model fit 	p being with and being without: an ethnography of relating in dementia care 	p individualised cognitive therapy through stimulation and individualised sims (sonas individual multi-sensory session) with long stay psychiatry of later life subjects who have cognitive impairment 	p behavioural and non-cognitive symptoms of dementia in acute hospitals 	p brief dementia screens in clinic: comparison of the quick mild cognitive impairment (qmci) screen and six item cognitive impairment test ( cit) 	p recommendations for incorporating lifelogging technologies into therapeutic approaches for people with dementia 	p feasibility and validity of using cognitive training applications to assess cognition in community dwelling older people 	p resilience in older age: living as married and with religious belief reduce the negative effect of increased disability on quality of life among older people in ireland 	p nature and extent of elder abuse in ireland: examining role of primary care practitioners 	p attitudes to ageing and perceptions of working with older people of students of health and social care 	p loneliness and older adults living in residential care: an exploration of the factors that may influence it 	p home-care re-ablement services for improving and maintaining the functional independence of older adults: a cochrane review 	p capturing the quality of death and dying in long term care (ltc) facilities: family perspectives 	p health care professionals’ perceptions of a connected health model for dementia 	p caregivers’ perception of a connected health model for dementia care 	p an exploration of the experiences of formal carers who participate in life story work with people with dementia in the residential care setting 	p combatting elder abuse: learning from each other/working together 	p informal carer perceptions of providing mealtime assistance to people with dysphagia in a long term residential care facility 	p the role of driving for older adults in rural ireland 	p implementing an age-friendly county programme: no easy job, a stakeholder’s perspective 	p exploring the perspectives and experiences of business managers when working with customers with dementia 	p an audit of the plate pal volunteer programme in a long term care nursing unit for older persons 	p ‘double edged sword’: perceptions of nurses to the introduction of pet therapy for older people with an intellectual disability 	p an exploration of older adults’ internet use in an irish context 	p exploring the impact of frailty on the health and social care system in ireland 	p a review of integrated care mechanisms used to better coordinate care across sectors for community-dwelling frail older people 	p how a night nursing service supports older people to die at home 	p the key to meaningful ageing in residential care [pdf] an adolescent with anorexia nervosa and gastrointestinal stromal tumors. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /appi.ajp. . . corpus id: an adolescent with anorexia nervosa and gastrointestinal stromal tumors. @article{frankel anaw, title={an adolescent with anorexia nervosa and gastrointestinal stromal tumors.}, author={gladys j frankel and k. halmi}, journal={the american journal of psychiatry}, year={ }, volume={ }, pages={ - } } 	gladys j frankel, k. halmi 	published 	medicine 	the american journal of psychiatry the literature often describes medical complications that are a result of the malnutrition and weight loss that define anorexia nervosa. the comorbidity of anorexia nervosa with other independent medical disorders associated with weight loss is unusual. case reports have described anorexia nervosa coincident with, for example, lymphocytic leukemia ( ), chronic pancreatitis ( ), celiac disease ( ), and cerebral meningioma ( ). in the present report we describe the case of a young man who met… expand view on pubmed cedd.org.au save to library create alert cite launch research feed share this paper citationsbackground citations view all topics from this paper 	anorexia nervosa 	neoplasms 	gastrointestinal stromal tumors 	stromal neoplasm 	gastrointestinal diseases 	lymphoid leukemia 	celiac disease 	pancreatitis 	malnutrition 	diagnostic criteria 	differential diagnosis 	pancreatitis, chronic 	cerebral meningioma citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency cancer and anorexia nervosa in the adolescence: a family-based systemic intervention 	gabriella de benedetta, i. bolognini, s. d'ovidio, a. pinto 	medicine 	international journal of family medicine 	 	 	pdf 	view excerpt, cites background save alert research feed psychiatric symptoms causing delay in diagnosing childhood cancer: two case reports and literature review 	t. hensgens, e. bloemer, + authors g. kaspers 	medicine 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feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue microsoft word - janneforsidermai development, evaluation and the effects of the vips practice model for the person-centred care of patients with dementia an intervention study in norwegian nursing homes janne røsvik faculty of medicine, university of oslo ageing and health, norwegian centre for research, education and service development, vestfold hospital trust © janne røsvik, series of dissertations submitted to the faculty of medicine, university of oslo no. isbn - - - - all rights reserved. no part of this publication may be reproduced or transmitted, in any form or by any means, without permission. cover: inger sandved anfinsen. printed in norway: ait oslo as. produced in co-operation with akademika publishing. the thesis is produced by akademika publishing merely in connection with the thesis defence. kindly direct all inquiries regarding the thesis to the copyright holder or the unit which grants the doctorate. hold sinnet ditt várt og villig som greina i brisen; en hvileplass for fugler med vingen blå av himmelduft – hans børli – keep your mind gentle and willing like the branch in the breeze a resting place for birds with their wing blue from celestial scent (translated by j.r) table of content acknowledgements ............................................................................................... abstract ................................................................................................................. sammendrag ....................................................................................................... list of papers ....................................................................................................... abbreviations ...................................................................................................... introduction .................................................................................................... background .................................................................................................... . dementia ..................................................................................................... . . prevalence and incidence ..................................................................... . . the diagnosis of dementia .................................................................... . . dementia care in norwegian nursing homes ........................................ . . dementia in nursing homes in norway ................................................. . neuropsychiatric symptoms ........................................................................ . . prevalence of neuropsychiatric symptoms …………………….………… . . types of neuropsychiatric symptoms .................................................... . . assessment scales for neuropsychiatric symptoms .............................. . . psychosocial interventions for neuropsychiatric symptoms .................. . . pharmacological treatment of neuropsychiatric symptoms ................... . quality of life in people with dementia ......................................................... . . assessment scales for the quality of life of people with dementia ......... . person-centred care (pcc) ......................................................................... . . the vips framework for pcc for people with dementia ....................... . . criticism of pcc and related theories ................................................... . . evidence for the effects of person-centred care ................................... . implementation in health-care settings ........................................................ . complex interventions ................................................................................. the present study .......................................................................................... . aim of the thesis .......................................................................................... . design ......................................................................................................... . methods ....................................................................................................... . . what is person-centred care in dementia? clinical reviews into practice: the development of the vips practice model....................................... . . a model for using the vips framework for person-centred care for persons with dementia in nursing homes .............................................. . . the vips practice model (vpm) ........................................................... . . the effect of person-centred dementia care to prevent agitation and other neuropsychiatric symptoms and enhance quality of life in nursing home patients: a -month randomized controlled trial ...... . . factors associated with effect of the vips practice model on neuropsychiatric symptoms in persons with dementia .......................... . analyses ...................................................................................................... . . a model for using the vips framework for person-centred care for persons with dementia in nursing homes .............................................. . . the effect of person-centred dementia care to prevent agitation and other neuropsychiatric symptoms and enhance quality of life in nursing home patients: a -month randomized controlled trial ...... . . factors associated with effect of the vips practice model on neuropsychiatric symptoms in persons with dementia .......................... . ethical considerations .................................................................................. results - abstracts of the four papers ............................................................ . paper what is person-centred care in dementia? clinical reviews into practice: the development of the vips practice model. ................................ . paper a model for using the vips framework for person-centred care for persons with dementia in nursing homes. ...................................................... . paper the effect of person-centred dementia care to prevent agitation and other neuropsychiatric symptoms and enhance quality of life in nursing home patients: a -month randomized controlled trial ........................... . paper factors associated with effect of the vips practice model on neuropsychiatric symptoms in persons with dementia in nursing homes. .... discussion ................................................................................................... . the vips practice model (vpm) ............................................................... . . evaluation ........................................................................................... . . implementation components ............................................................... . . methodological considerations ............................................................ . the effect of the vips practice model on neuropsychiatric symptoms in persons with dementia in nursing homes ..................................................... . . effect on agitation ............................................................................... . . effects on the total amount of neuropsychiatric symptoms ................. . . effect on psychosis ............................................................................. . . effect on depression ........................................................................... . . variation between the units ................................................................. . . effect of unit size ................................................................................. . . methodological considerations ............................................................ . clinical implications and proposals for future research .............................. references .................................................................................................. attachment acknowledgements i want to thank Øyvind kirkevold, who has been my main supervisor. he has guided me though the process with open-mindedness, which has given me confidence. his knowledge of the field, statistical skills and other contributions have been of great help. i wish to express my gratitude to knut engedal. i thank him for his kindness, generosity and unwavering support. his incredibly swift and thorough feedback have been invaluable. his great capacity and sharp mind, visionary insights and ability to see the larger picture make him one of a kind. he has been the leader of this project as well as my supervisor. i also thank geir selbæk, who was the third supervisor in the research team, his input has been of great value. i am grateful to dawn brooker for her generosity regarding the use of the vips framework, it is her work, for which she is owed great respect and acknowledgement. i thank her for her co-authorship and i am honoured for the opportunity to work with her. anne marie mork rokstad and i have been phd candidates together in this project and have shared first authorship of paper . i want to thank her for her co-operation and partnership. it has been a pleasure working with her. special thanks go to my colleague marit mjørud. it has been a joy and inspiration to share an office and to develop further the vips practice model with her. my work-place was aging and health, norwegian centre for research, education and service development. arnfinn eek, who is the manager, has given support and encouragement. i want to thank the librarians—especially eva anfinnsen, who received most of my requests and was always ready to assist—and also vigdis knutsen. i want to thank my colleagues who participated in the data collection process and my colleagues at loftet, ullevål, oslo university hospital. i looked forward to meeting you each day. i am grateful to the nurses and managers at the nursing homes that participated in the pilot study and the randomized controlled trial for their efforts. finally, i wish to thank my family for their love, encouragement and warm support. this project was funded by the norwegian research council. abstract as the threshold for the use of psychotropic drugs in persons with dementia is getting higher because of modest effect and potential serious adverse effects, the need for research of the effectiveness of psychosocial interventions is urgently needed. person-centred care (pcc) is a social-psychological care philosophy based on professor tom kitwood’s work that is regarded as one of the most promising psychosocial approaches in care for persons with dementia. the cornerstone of person-centred care is that of personhood, defined as “a standing or status that is bestowed upon one human being, by others, in the context of relationships and social being. it implies recognition, respect and trust.” persons with dementia are dependent on others and less able to take the initiatives that would lead to their needs being met. therefore, their basic psychological needs for comfort, attachment, inclusion, occupation and identity are emphasized in pcc in addition to physical needs. clinical manifestations of dementia are understood as arising from a complex interaction between the patient’s personality, biography, physical health, neurological impairment, and the social psychology that permeates the environment. the ‘vips’ framework developed by dawn brooker sums up the elements in person- centred care for persons with dementia as values, individualised approach, the perspective of the person living with dementia and social environment. there are six indicators for each element providing concrete requirements for what constitute pcc. few models of implementation of pcc exist and few randomized controlled studies have been conducted, rendering the evidence of effect limited. the overarching aim of this thesis was to translate the values of pcc into practical daily care by use of the vips framework, and to evaluate the effect on neuropsychiatric symptoms in persons with dementia in nursing homes. in particular, this study aimed to determine the following a. to examine whether a model developed for practical use in the vips framework could be implemented in a norwegian nursing home setting b. to investigate the effects of this model on neuropsychiatric symptoms c. to identify any organizational factors associated with the effects of the model the vips framework has been operationalized into the vips practice model (vpm). the vpm incorporates an education and coaching approach, clearly defined staff roles, and patient-focused outcomes in a cycle to support improvements in quality of care. it is based on regular structured team work, supervision and supportive management, elements highlighted by kitwood. the model focuses on the process between the staff in the ward, and the building of a shared base of values and knowledge in the staff. the hub of the vpm is the weekly consensus meeting in the units using the vips framework to analyse a challenging interaction between a patient and a nurse. the analysis emphasizes how the patient might experience the situation and how his/her neurological impairment, physical health, personality, life history and psychosocial needs might impact on his or her reactions. each consensus meeting follows a set procedure where the staff exerts their defined functions and takes part in the decision on how to proceed to prevent agitation or other neuropsychiatric symptoms in the patient. the purpose is to make the staff aligned in a person-centred view of the situation (paper ). an initial evaluation of the vpm was conducted with a qualitative evaluative study design. the vpm was trialled in a -week pilot study in two nursing homes and evaluated in four focus groups using qualitative content analysis (paper ). seven registered nurses (rns) and five auxiliary nurses (ans) participated from nursing home a, four rns and seven ans participated from nursing home b. five themes emerged: ( ) legitimacy of the model was secured when central roles were held by nurses representing the majority of the staff; ( ) the model facilitated the staff’s use of their knowledge of pcc; ( ) support to the persons holding the internal facilitating roles in the model was needed; ( ) the authority of the leading registered nurse in the ward was crucial to support the legitimacy of the model; ( ) form of organisation seemed to be of importance in how the model was experienced. the vpm was found to be feasible in the nursing home setting with some revision. we hypothesized that the vpm was more effective than educating the nursing home staff about dementia (control group) in reducing agitation and other neuropsychiatric symptoms among nursing home patients. a month cluster randomized controlled trial (rct) was conducted to examine the effect of the vpm together with dementia care mapping (dcm), another model based on pcc (paper ). the rct was conducted in the period from january to december . all nursing homes located in the city of oslo were invited to participate in the study. the nursing homes that accepted the invitation were randomized into three groups according to their size defined as small ( – patients; six nursing homes), medium ( – patients; six nursing homes) or large ( – patients; three nursing homes). one group received intervention with dcm, one group received intervention with the vpm and the last group constituted a common control group for both intervention groups. dcm consists of in-depth four to six hours observations (mappings) of persons with dementia consisting of the standardized coding of the patients’ well-being and behaviour in the dining area or the living room. descriptions of interaction between staff and patients were also recorded. the observations were followed by a feedback session within one week in which the care staff was invited to reflect upon the findings and to plan future actions to improve care. the care staff and their leaders then implemented the action plans in the nursing home units without any further involvement of the researchers. after months, the dcm observations and feedback were repeated. two care staff members from each ward attended a basic dcm course certifying them to use dcm in their own nursing homes. the rest of the care staff received a three-hour introduction to pcc and dcm in the form of lectures from the researchers. the dcm observations were carried out by the researchers in collaboration with the internal dcm-certified staff. in the vpm intervention the leading registered ward nurse, an auxiliary nurse from each ward and a registered nurse appointed as the internal vpm coach in each nursing home attended a three-day basic course before implementing the vpm in each unit. the directors of the nursing homes were also invited. the course, conducted by the researchers, focused on the main elements in pcc and the structure of the vpm. a dvd illustrating the perspective of the person with dementia was used as a basis and starting point for discussions of pcc. another dvd showing the structure of the consensus meeting in practise was shown before all the participants got to try out their roles and functions in role plays. time was set aside for the participants from each nursing home to plan the introduction to the rest of the staff and make a schedule for the consensus meetings in the units and the supervision sessions. the vpm coach then conducted a three-hour introduction to pcc and the vpm for the rest of the staff in their nursing home. all staff also received the vpm manual. the vpm was implemented in the units as described above. all three groups received five dvds with lectures ( min each) about dementia. thus, the staff of the control group received only this intervention. fourteen nursing homes with a total of wards and patients with dementia were included in the study (one nursing home withdrew from participation after randomization). as ( %) were lost to follow-up assessments, most of them because of death, a total of patients were included in the efficacy analysis. in the vpm intervention group nursing homes with wards (range – patients) and patients were analysed. in the dcm intervention group nursing homes with wards (range - patients) and patients were analysed. in the control group five nursing homes with wards (range - patients) and patients were analysed (paper ). the primary outcome was change on the brief agitation rating scale (bars). secondary outcomes were changes on the -item version of the neuropsychiatric inventory questionnaire (npi-q), the cornell scale for depression in dementia (csdd) and the quality of life in late-stage dementia (qualid) scale. change in the primary and secondary end points was defined as the difference between the follow-up and baseline scores. the intra-class correlation coefficient (icc), which is the average correlation between patients from the same unit compared to the average correlation between patients from different units, was calculated. as there was a cluster effect in the data, the association between the change in the end points and the type of intervention as main predictor was assessed by regression models for hierarchical data. such models take possible correlations between members of the same cluster (nursing home ward) into account and might prevent false significant findings. the associations were further controlled for age, gender, the cdr sum of boxes, general physical health, numbers of patients in a ward, type of ward and staff-patient ratio at baseline. the results of the rct showed that changes in the bars score did not differ significantly between the vpm and the control group after months, nor between dcm and the control group. however, we did find significantly less agitation as measured by the npi-q agitation subscale in patients of both intervention groups, as compared to the control group. both the vpm and dcm had significant effect (less symptoms) on the total amount of neuropsychiatric symptoms and on psychotic symptoms compared to the control group as measured by the npi-q. the rct showed a significant reduction in depression for the vpm intervention group compared to the control group measured by the csdd which was not found for the dcm intervention group. likewise, there was significantly less deterioration in quality of life in the dcm group measured by the qualid scale compared to the control group, whereas the less deterioration in quality of life found in the vpm group was not significantly different compared to the control group. the results of the rct indicated that a substantial proportion of the total variance of the effects of the vpm (as well as for the dcm) was related to conditions in the particular unit (ward). therefore, it was of interest to know which factors explained this variance. the vpm sub-set of data from the rct was explored using multilevel linear regression (paper ). the dependent variables were the change in scores on the npi-q and the csdd. the results showed that the unit in which the patient was living explained % of the vpm's total variance in effect on the npi-q and % for the csdd. organizational factors related to the unit were found to be more influential than factors at the institutional level when implementing pcc by use of the vpm. of the variables in the multilevel model, unit size was the variable that explained the most of the variance in effect of the vpm. a unit was defined as an administrative unit of the nursing home with their own leader. the effect of the vpm was best in the small units. in conclusion, the present thesis shows that the vips practice model developed for practical use of the vips-framework for person-centred care for persons with dementia is feasible in a norwegian nursing home setting. the project also demonstrates that implementing pcc by the use for the vpm might reduce the total amount of neuropsychiatric symptoms, psychotic symptoms and depression in patients with dementia. the effects seem to be best in small size units. further research should continue to focus on how staff can gain more knowledge of neuropsychiatric symptoms, more insight into how the world might look from the perspective of the persons with dementia, and how person-centred care best can be implemented in different types of dementia care settings. sammendrag ettersom terskelen for å gi psykofarmaka til personer med demens er høy på grunn av at denne typen legemidler har moderat effekt og kan ha alvorlige bivirkninger, er det et stort behov for forskning på effekt av psykososiale tiltak for personer med demens. professor tom kitwood utviklet en sosialpsykologisk omsorgsfilosofi som han kalte personsentrert omsorg. denne ses på som en av de mest lovende psykososiale tilnærmingene som kan anvendes i omsorgen for personer med demens. kitwood tok utgangspunkt i carl rogers psykoterapeutiske tilnærming som la vekt på autentisk kontakt og kommunikasjon. hjørnesteinen i personsentrert omsorg er «personhood», på norsk gjerne oversatt til «personverd». personhood defineres som “..en status som gis til et menneske av andre i sosiale relasjoner. det innebærer anerkjennelse, respekt og tillit”. Å kunne tilfredsstille grunnleggende behov for trøst, tilknytning, inklusjon, beskjeftigelse og identitet er framhevet i personsentrert omsorg, siden en person med demens er avhengig av andre og i mindre grad i stand til å ta initiativ til å få dekket behovene selv. hvordan demens framstår klinisk blir i denne omsorgsfilosofien forstått som et resultat av et kompleks samspill mellom pasientens personlighet, livshistorie, fysisk helse, nevrologiske (og nevropsykiatriske) symptomer og sosiale og psykologiske forhold som preger miljøet. vips rammeverket, som ble utviklet av dawn brooker, summerer opp elementene i personsentrert omsorg for personer med demens som: verdier, individuell tilpasset tilnærming, perspektivet til personen med demens og det sosiale miljøet. hvert element inneholder seks indikatorer som beskriver hva som kreves for at omsorgen skal være personsentrert. det finnes få modeller for å innføre personsentrert omsorg, og fordi det er utført få randomiserte kontrollerte studier finnes det lite bevis for effekt. det overordnede målet for denne avhandlingen var derfor å implementere verdiene i personsentrert omsorg i daglig, praktisk omsorg ved å bruke vips rammeverket, og å evaluere effekten av dette på nevropsykiatriske symptomer hos personer med demens i sykehjem. spesielt var vi interessert i . Å undersøke om en modell utviklet for praktisk bruk av vips rammeverket kunne implementeres i norske sykehjem . Å undersøke effektene av en slik modell på nevropsykiatriske symptomer . Å undersøke, om modellen har effekt, hvilke organisatoriske faktorer som har sammenheng med effektene til denne modellen vips rammeverket er blitt operasjonalisert i det som har fått navnet vips praksismodell (vpm). vpm anvender undervisning og veiledning, definerte roller for personalet og fokus på hvordan omsorgen påvirker pasienten i en prosess for å utvikle kvaliteten i omsorgen. den er basert på et strukturert samarbeid, veiledning og aktiv støtte fra ledelsen, elementer som kitwood framhevet. modellen fokuserer på prosessen i personalgruppen på avdelingen, og på å bygge felles verdigrunnlag og kunnskapsbase i personalet. navet i vpm er et ukentlig fagmøte på avdelingen der vips rammeverket brukes til å analysere en utfordrende samhandlingssituasjon mellom pasient og pleier. analysen legger vekt på hvordan situasjonen oppleves for pasienten og hvordan hans/hennes nevrologiske symptomer, fysiske helse, personlighet, livshistorie og psykososiale behov kan virke inn på hans/hennes reaksjoner. hvert fagmøte følger et fast program der personalet har definerte roller og er med på å fatte beslutningene om hvordan omsorgen best kan tilrettelegges for å forebygge agitasjon eller andre nevopsykiatriske symptomer hos pasienten. hensikten er at personalet skal bli samkjørte i et personsentrert syn på situasjonen (artikkel ). vpm ble først evaluert i en uker lang pilot studie i to sykehjem. studien hadde et kvalitativt design og evalueringen ble gjort i fire fokusgruppeintervju der sju sykepleiere og fem hjelpepleiere deltok fra sykehjem a, og fire sykepleiere og sju hjelpepleiere deltok fra sykehjem b. qualitative content analysis ble brukt til å analysere fokusgruppeintervjuene (artikkel ). fem hovedtema ble identifisert: ( ) modellen fikk legitimitet når pleiere som representerte flertallet i personalgruppen hadde sentrale roller; ( ) modellen la til rette for at personalet fikk bruke kunnskapene sine om personsentrert omsorg; ( ) det var nødvendig med støtte til personene som var tildelt framtredende roller; ( ) avdelingslederens autoritet var avgjørende for å opprettholde modellens legitimitet i personalet; ( ) organisasjonsform hadde betydning for personalets opplevelse av modellen. vpm ble vurdert som velegnet i norske sykehjem etter litt justering. vi framsatte en hypotese om at vpm kunne være mer effektiv enn å gi undervisning til personalet om demens for å minske agitasjon og andre nevropsykiatriske symptomer hos sykehjemspasienter. en måneders randomisert kontrollert studie (rct) ble gjennomført for å måle effekten av vpm og dementia care mapping (dcm), en annen modell basert på personsentrert omsorg, sammenlignet med å gi undervisning om demens til personalet (artikkel ). rct-studien ble gjennomført fra januar til desember . alle de sykehjemmene i oslo fikk tilbud om å delta i studien. ved hjelp av loddtrekning ble de sykehjemmene som takket ja fordelt i tre grupper etter størrelse; lite sykehjem ( - pasienter; seks sykehjem), middels stort sykehjem ( - pasienter; seks sykehjem) eller stort sykehjem ( - pasienter; tre sykehjem). en gruppe fikk dcm som intervensjon, en gruppe fikk vpm som intervensjon og en siste gruppe utgjorde en felles kontrollgruppe for de to intervensjonsgruppene. dcm består av å utføre nøyaktige observasjoner av atferd (mappings) av personer med demens og bruker standardisert koding av pasientenes uttrykk for velvære og atferd. mapping gjennomføres i fire til seks timer i spisesal eller stue. det blir laget beskrivelser av samhandling mellom pleiere og pasienter. innen en uke etter observasjonene blir det gitt tilbakemelding der personalet blir oppmuntret til å reflektere rundt funnene og planlegge tiltak for å forbedre omsorgen. deretter blir personalet og deres ledere oppfordret til å utarbeide tiltaksplaner i sykehjemsavdelingene uten videre medvirkning fra forskerne. etter seks måneder ble dcm observasjon og tilbakemelding gjentatt i studien. ved studiestart deltok to pleiere fra hver avdeling på et innføringskurs i dcm der de ble sertifisert til å bruke dcm på sykehjemmene de arbeidet ved. resten av personalet fikk et tre timers introduksjonskurs om personsentrert omsorg og bruk av dcm i form av forelesninger fra forskerne. dcm-observasjonene ble utført av forskerne i samarbeid med de interne pleierne som hadde fått dcm sertifisering. i vpm intervensjonen deltok avdelingslederen, en hjelpepleier/helsefagarbeider fra hver avdeling og en fagutviklingssykepleier fra hvert sykehjem som fikk rollen som intern vpm veileder, på et tredagers introduksjonskurs før vpm ble innført på avdelingene. institusjonslederne ble også invitert. kurset ble holdt av forskerne og fokuserte på elementene i personsentrert omsorg og strukturen i vpm. en dvd som illustrerte perspektivet til en person med demens ble brukt som utgangspunkt for å diskutere personsentrert omsorg. en annen dvd som viste hvordan fagmøtet i vpm fungerer i praksis ble vist før alle deltakerne fikk prøve ut sine roller og funksjoner i rollespill. det var satt av tid slik at deltakerne fra hvert sykehjem fikk planlegge introduksjonen til resten av personalet og lage en plan for fagmøtene på avdelingene samt veiledning. hver interne vpm veileder ga så en tre timers introduksjon om personsentrert omsorg og vpm til resten av personalet i sitt sykehjem. personalet fikk også en vpm-manual. vpm ble innført på avdelingene som beskrevet. alle tre grupper fikk fem dvder som inneholdt foredrag (à min) om demens, for kontrollgruppen ble dette deres intervensjon. fjorten sykehjem med totalt avdelinger og pasienter med demens ble inkludert i studien (et sykehjem falt fra etter randomiseringen). ettersom ( %) falt ut før andre måling ( måneder), hovedsakelig på grunn av dødsfall, ble tilslutt pasienter inkludert i effektanalysene. i vpm-gruppen ble fire sykehjem med avdelinger (pasientantall fra til ) og pasienter analysert. i dcm-gruppen ble fem sykehjem med avdelinger (pasientantall fra til ) og pasienter analysert. i kontrollgruppen ble fem sykehjem med avdelinger (pasientantall fra til ) og pasienter analysert (artikkel ). primært effektmål var endring i skåren på brief agitation rating scale (bars). sekundære effektmål var endring i skårene på neuropsychiatric inventory questionnaire (npi-q), cornell scale for depression in dementia (csdd) og skala for quality of life in late-stage dementia (qualid). endring i primært og sekundære effektmål var definert som differansen mellom skårene på måling etter måneder og skårene ved oppstart av rct-en (baseline). intra klasse koeffisienten (intra-class (cluster/klynge) coefficient, icc) ble beregnet. icc er den gjennomsnittlige korrelasjonen mellom pasientene fra samme avdeling sammenlignet med den gjennomsnittlige korrelasjonen mellom pasientene fra ulike avdelinger. ettersom det ble funnet en gruppeeffekt (klyngeeffekt) i dataene, ble sammenhengen mellom endring i effektmål og type intervensjon beregnet ved hjelp av regresjonsmodeller for hierarkiske data. slike modeller tar hensyn til mulig korrelasjon mellom medlemmer av en gruppe (sykehjemsavdeling) og kan slik forhindre falske signifikante funn. forskjellen mellom første måling og andre måling innen hver gruppe ble beregnet ved bruk av t test for parvise utvalg. kontinuerlige effektmål i intervensjonsgruppen og kontrollgruppen ble sammenlignet ved bruk av t test for uavhengige utvalg. sammenhengene ble kontrollert for alder, kjønn, grad av demens, generell somatisk helsetilstand, antall pasienter i avdelingen, type avdeling og pleier-pasient ratio ved første måling. resultatene viste at endringene i bars-skåre ikke var signifikant forskjellige mellom vpm gruppen og kontrollgruppen etter måneder, heller ikke mellom dcm og kontrollgruppen. derimot fant vi en signifikant forskjell i agitasjon målt ved subskalaen for agitasjons på npi-q i favør av begge intervensjonsgruppene sammenlignet med kontrollgruppen. både vpm og dcm hadde signifikant og positiv effekt på totalt antall nevropsykiatriske symptomer og på psykotiske symptomer sammenlignet med kontrollgruppen målt med npi-q. rct-en viste en signifikant reduksjon i depresjonssymptomer for vpm intervensjonen sammenlignet med kontrollgruppen målt ved csdd, en effekt som ikke ble funnet for dcm intervensjonsgruppen. likeså var det en signifikant mindre forverring i livskvalitet i dcm-gruppen målt ved qualid-skalaen sammenlignet med kontrollgruppen, mens den reduserte forverringen av livskvalitet som ble funnet i vpm-gruppen ikke var signifikant sammenlignet med kontrollgruppen. resultatene fra rct-studien indikerte at en substansiell del av den totale variasjonen i effektene av vpm (og av dcm) hadde sammenheng med forhold på hver avdeling. derfor var det interessant å få innsikt i hvilke faktorer som forklarte variasjonen i effekt. datagrunnlaget for vpm-gruppen ble derfor analysert ved bruk av multilevel lineær regresjon (analyseteknikk for data ordnet hierarkisk) (artikkel ). endring i skåre på npi-q og csdd ble brukt som avhengige variabler. resultatene viste at avdelingen som pasienten bodde på forklarte % av den totale variasjonen i effekt for vpm for npi-q og % for csdd. organisatoriske faktorer relatert til avdelingen viste seg å ha større innvirkning på effekten av vpm enn faktorer på institusjonsnivå. i analysen var avdelingsstørrelse den variabelen som forklarte mest av variasjonen i effekt av vpm. en avdeling var definert som en administrativ enhet i sykehjemmet med egen leder. effekten av vpm var best i små avdelinger. konklusjonen i denne avhandlingen er at vips praksismodell (vpm), som ble utviklet for å bruke vips rammeverket til å innføre personsentrert omsorg for personer med demens, passer til bruk i norske sykehjem. prosjektet viser også at å innføre personsentrert omsorg ved hjelp av vpm kan redusere nevropsykiatriske symptomer totalt, psykotiske symptomer og depresjon hos pasienter med demens. effekten synes å være best i små avdelinger med egen leder. videre forskning bør fokusere på hvordan personalet kan få økt kunnskap om nevropsykiatriske symptomer, mer innsikt i hvordan verden kan oppleves fra perspektivet til en person med demens, og hvordan personsentrert omsorg best kan innføres på ulike arenaer for demensomsorg, for eksempel i dagsenter og hjemmesykepleie. list of papers . røsvik j., brooker d., mjørud m. & kirkevold Ø. ( ) what is person- centred care in dementia? clinical reviews into practice: the development of the vips practice model. reviews in clinical gerontology ; : – . røsvik j., kirkevold m., engedal k., brooker d. & kirkevold Ø. ( ) a model for using the vips framework for person-centred care for persons with dementia in nursing homes: a qualitative evaluative study. international journal of older people nursing ; : – . rokstad a.m.m ., røsvik j ., kirkevold Ø., selbæk g., saltyte benth j. & engedal k. ( ) the effect of person-centred dementia care to prevent agitation and other neuropsychiatric symptoms and enhance quality of life in nursing home patients: a -month randomized controlled trial. dementia and geriatric cognitive disorders ; : – shared first authorship . røsvik j., engedal, k. & kirkevold Ø. ( ) factors associated with effect of the vips practice model on neuropsychiatric symptoms in persons with dementia in nursing homes. dementia and geriatric cognitive disorders accepted december abbreviations an auxiliary nurse bars brief agitation rating scale cdr clinical dementia rating scale cmai cohen-mansfield agitation inventory csdd cornell scale for depression in dementia dcm dementia care mapping dsm- diagnostic and statistical manual of mental disorders icd- international classification of disease and related health problems npi neuropsychiatric inventory npi-nh neuropsychiatric inventory nursing home npi-q neuropsychiatric inventory questionnaire qualid quality of life in late-stage dementia scale pcc person-centred care rct randomized controlled trial rn registered nurse scu special care units vips values, individualized care, perspective of the person, social inclusion vpm vips practice model introduction like in most countries throughout the world, the population is ageing in norway, which has led to a significant rise in the number of people with dementia. it is estimated that . million people throughout the world had dementia in , and this number is predicted almost to double every years, to . million in (prince et al., ). presently, it is estimated that about , persons have got dementia in norway (norwegian ministry of health and care services, ). this means that dementia and dementia care have become priority research areas in order to meet the population’s future health-care needs. dementia is a chronic progressive brain condition, which is caused by various brain disorders. dementia leads to a decline in multiple areas of cognition and an increase in neuropsychological symptoms, such as agitation and depression, as well as dependency because of the inability to perform daily living activities (engedal & haugen, ). the threshold for the use of psychotropic drugs in patients with dementia is increasing, so there is an urgent need to study the effectiveness of psychosocial interventions (lyketsos, ). kitwood’s care philosophy; i.e., person- centred care (pcc) (kitwood, a), is regarded as one of the most promising psychosocial approaches. however, it has been difficult to translate the pcc philosophy into practical daily care (mccormack, ). at present, the evidence base for the effectiveness of pcc is limited, which is partly because few models for implementation of pcc were available. this thesis describes the development of a model for implementing kitwood’s pcc philosophy, the vips practice mode (vpm), it attempts to provide evidence for the positive effect of pcc by use of the two pcc models vpm and dcm, as well as identifying factors that may influence the implementation and the effects of using the vpm. my college anne marie mork rokstad was responsible for the dcm intervention and has described this in her thesis. background . dementia . . prevalence and incidence engedal & haugen ( ) examined the prevalence of dementia in elderly norwegians aged years and above using a representative sample from a population surveyed in oslo. the estimated total prevalence in that study was . %, and the incidence of dementia was estimated to be , people per year. the number of people aged over years is rising, so the number of people with dementia will double, and it is estimated to reach about , in – years (engedal & haugen, ). these figures fit well with figures from international prevalence studies from other european countries. . . the diagnosis of dementia dementia is a chronic irreversible brain syndrome. there are various underlying causes, but all lead to cognitive impairment, a reduced ability to function in daily life compared with that previously possible, and changes in social functioning. the first cognitive symptom in most cases is reduced memory, except in fronto-temporal dementia, where changes of behaviour are the hallmarks. other cognitive symptoms include impaired orientation, impaired reasoning, impaired spatial orientation and speech problems. a person with dementia will also develop symptoms behavioural and neuropsychiatric symptoms such as irritability, depression or changes in personality, and motor symptoms such as a loss of balance and incontinence (engedal & haugen, ). two sets of criteria which do not differ much in their content are used for the diagnosis of dementia, as follows. international statistical classification of diseases and related health problems, th revision (icd- ) version (who, ) diagnostic and statistical manual of mental disorders, fifth edition (dsm- ) (american psychiatric association, ) (apa). in icd- , the term dementia is defined as a “mental and behavioural disorder”. it is a syndrome characterized by dysfunction in at least two cognitive areas, which usually begins with memory deficits or impaired executive functions. other areas such as orientation, language and general intellectual function become affected gradually. cognitive impairment affects a person’s capacity to deal with everyday activities. this is the definition of dementia in icd- : “dementia is a syndrome due to diseases of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. consciousness is not clouded. the impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation. this syndrome occurs in alzheimer disease, in cerebrovascular disease, and in other conditions primarily or secondarily affecting the brain”. (international statistical classification of diseases and related health problems, th revision (icd- ) dementia (f -f ) textbox research criteria for dementia according to icd- from world health organization, i . memory impairment, especially for new information . impairment of other cognitive functions (judgment, planning, thinking, abstraction) mild: affects the persons capacity to cope with everyday activities moderate: the person cannot live independently. severe: continuously care is required. ii. clear consciousness iii. impairment in emotional control, motivation or social behaviour in at least one of the following: . emotional instability . irritability . apathy . coarsening of social behaviour iv. the condition must have a duration of at least months dsm- (apa ) uses the term “neurocognitive disorder”, although “dementia” can still be used. dsm- defines the core feature of neurocognitive disorder as acquired cognitive decline in one or more cognitive domains based on a concern about cognition and performance in an objective assessment that falls below the expected level (see textbox ). textbox diagnostic criteria for major neurocognitive disorder according to dsm- early onset dementia early onset dementia is the term applied to dementia with debut before the age of . this group accounts for around – % of people with dementia in norway (engedal & haugen, ). fronto-temporal dementia is relatively more frequent in younger people and is seen rarely in older people, but alzheimer’s disease is still the most common form of dementia in the younger persons. there is more variation in cognitive symptoms in younger than in older people with dementia (rosness, haugen, & engedal, ). this thesis does not consider the special needs of those with early onset dementia. from american psychiatric association, late onset dementia late onset dementia is the term applied to all types of dementia with debut after the age of . the most common types of late onset dementia are alzheimer’s disease, lewy body dementia and vascular dementia (engedal & haugen, ). types of dementia dementia disorders can be divided into three groups according to the aetiologies: degenerative brain diseases, vascular diseases and secondary dementias. the differences in the symptoms and signs among the different types of dementia are greatest during the early phase of various dementia disorders. a. evidence of significant cognitive decline from a previous level of performance in one or more cognitive domains (complex attention, executive function, learning and memory, language, perceptual-motor, social cognition) based on: a. concern of the individual, a knowledgeable informant, or the clinician that there has been a significant decline in cognitive function; and b. a substantial impairment in cognitive performance, preferably documented by standardized neuropsychological testing or, in its absence, another quantified clinical assessment. the cognitive deficits interfere with independence in everyday activities (i.e., at a minimum, requiring assistance with complex instrumental activities of daily living such as paying bills or managing medications). b. the cognitive deficits do not occur exclusively in the context of a delirium. c. the cognitive deficits are not better explained by another mental disorder (e.g., major depressive disorder, schizophrenia). degenerative brain diseases alzheimer’s disease is a degenerative disease with specific neuropathological changes, which usually include intra-neuronal (neurofibrillary tangles) and extracellular parenchymal lesions (senile plaques) that are accompanied by synaptic losses and vascular amyloid deposits in the brain. approximately % of all people with dementia have this type of dementia. the first cognitive symptom is often reduced memory. in the next phases, motor symptoms often develop, such as loss of balance, as well as behavioural and psychological symptoms, such as apathy, depression and anxiety. in general, alzheimer’s disease has a gradual progression (engedal & haugen, ; gauthier et al., ). according to icd- , mixed alzheimer’s disease is ascribed to people who fulfil the diagnostic criteria for alzheimer’s disease and cerebrovascular disease (engedal & haugen, ). lewy body dementia is a type of dementia that involves a gradual impairment of cognitive function with fluctuations. wakefulness varies from day to day, while alertness and short-term memory ebb and flow. lewy bodies are structures found in degenerating brain cells. a critical feature of this type of dementia is hypersensitivity to neuroleptic medications. early during progression of the disease, the patient exhibits parkinsonism; i.e., shuffling gait, reduced arm swing during walking, reduced range of facial expressions and stiffness of movements. the patients will often experience visual hallucinations. disinhibition, sleep disturbances and depression are frequent, and there is an increased risk of falls. about – % of dementia patients have this type of dementia (engedal & haugen, ) fronto-temporal dementia is characterized by atrophy in the frontal and temporal lobes of the brain. in contrast to alzheimer’s disease, the early cognitive symptoms are reduced executive functions, such as a lack of initiative, impaired problem-solving ability and speech problems, rather than reduced memory. neuropsychiatric symptoms such as changes in personality with self-neglect and loss of inhibitions, causing inappropriate behaviour, occur early in the disease progression (engedal & haugen, ) vascular dementia vascular dementia is often attributable to stroke, small vessel disease or ischemia in the brain. it has a more sudden onset and a more stepwise decline in function than alzheimer’s disease, and it varies with respect to the cognitive symptoms. neuropsychiatric symptoms such as depression, emotional lability and apathy are common in vascular dementia, especially depression (engedal & haugen, ). secondary dementias there are numerous other causes of dementia, all of which are relatively rare, including alcohol related brain damages, huntington’s disease, creutzfeld-jacobs disease, normal pressure hydrocephalus, hiv infection, syphilis, subdural haematoma, cerebral tumours and many rare neurological disorders (engedal & haugen, ). many specialists maintain that dementia remains a clinical diagnosis, where laboratory or imaging tests still only provide supportive diagnostic evidence (chertkow, feldman, jacova, & massoud, ; engedal & haugen, ). others, especially neurologists, would prefer to use biomarkers (surrogate markers of the underlying pathological changes) for the diagnosis of various types of dementia, such as findings based on spinal fluid analyses and brain imaging techniques (dubois et al., ; dubois et al., ). the majority of older people with dementia have some evidence of vascular and neurodegenerative pathology (engedal & haugen, ). this thesis considers the common symptoms in people with different types of dementia. . . dementia care in norwegian nursing homes before the second world war, there were few institutions for the elderly in norway. however, demographic changes after the war and the expectations of greater welfare resulted in an increase. based on collaboration between the authorities and non- profit organizations, institutions for the elderly with about , beds were established by . the term “nursing home” emerged around . the government took legal responsibility for the care of the sick and disabled elderly in . norwegian nursing homes are publicly funded and were transferred to the jurisdiction of the local authorities in . in , the population of norway was just above five million. the number of people aged years and above was , , and about % ( , ) of them lived in nursing homes (statistics norway, ). the main types of units in the nursing homes are regular (ordinary) units and special care units (scus) for persons with dementia, where some have separate strengthened subunits for patients with severe behavioural and neuropsychiatric symptoms. some nursing homes also have units for rehabilitation and respite care. sheltered housing units are provided to people in an early stage of dementia who are in physical good health. these units are not defined as institutions, and their legal and funding status differ from the scus in nursing homes. sheltered housing will not be mentioned further in this thesis. the first scus were established in the mid s. the criteria for these units were vaguely defined—i.e., only the size of the units ( – patients) was specified—but a thorough examination of patients and a diagnosis of dementia were mentioned in a regulation of by the norwegian ministry of health (norwegian ministry of health, ) according to the review by lai et al. ( ), there is no standard definition of a scu internationally either (lai, yeung, mok, & chi, ), but the following components were described consistently as the defining characteristics of scus in a study by leon (leon & siegenthaler, ): . admission of patients with dementia . special selection, training and supervision of staff members . specially designed activity programming . family involvement . a specially designed physical environment, which is segregated from other areas the mean number of beds in norwegian scus was . in , although some had up to beds, mainly because the units were divided into subunits (kirkevold, eek, & engedal, ). many of the units had direct access to safe outdoor areas, such as a garden. scus have an average ratio of three patients per nurse during the day shifts on weekdays and four patients per nurse at the weekends and evenings. about one- third of the front-line staff in nursing homes lacks formal qualifications, and one- quarter of the staff have a college education (norwegian directorate of health, annual report, ). in , the proportion of registered nurses in scus was % (kirkevold, eek, & engedal, ). in , the proportion of unskilled carers was . % in regular units and . % in scus (kirkevold, sandvik, & engedal, ). kirkevold et al. ( ) examined a representative norwegian sample of regular nursing home units and scus, and found that scus had significantly fewer quality deficiencies with respect to care for basic needs compared with regular units (kirkevold & engedal, ). between and , the scu capacity doubled, and the coverage rate for people with dementia increased from % to %. in , % of the municipalities had established scus. in , % of the nursing home beds were in scus for people with dementia (kirkevold et al., ). in a study published in , kirkevold & engedal found that most patients received good basic care in norwegian nursing homes. however, the possibility of participating in leisure activities and outdoor pursuits was not prioritized. low function in terms of mental capacity, activities of daily living and neuropsychiatric symptoms such as aggressive behaviour were factors associated with reduced quality of care (kirkevold & engedal, ). the same factors, as well as severe dementia, were found to be associated with the use of restraints in a study reported in (kirkevold et al., ). almost % of the patients in the ordinary (somatic) units and % of the patients of scus were subjected to the use of restraints. in ordinary units, . % of the patients were subjected to the use of mechanical restraints, such as fixing to a chair, which also applied to . % of the patients in scus. the use of force or pressure during activities of daily living, such as holding the hands while washing when the patient resisted physically, was used towards . % of the patients of scus and towards . % of the patients of ordinary units (kirkevold & engedal, a). typically, the staff made the decision to use restraints, the physician in charge made the decision in only % of cases. the most common reason given for the use of restraints was to protect the patient or others, or to carry out medical treatment. routine documentation of the use of restraints was reported to be lacking (kirkevold & engedal, b). . . dementia in nursing homes in norway a study of a sample of , nursing home patients from nursing homes in municipalities in four norwegian counties showed that . % of the patients had dementia (selbaek, kirkevold, & engedal, ), with a score of at the clinical dementia rating scale (cdr) (hughes, berg, danziger, coben, & martin, ). in line with the cross-sectional data of this sample, a -month longitudinal follow-up study was conducted (selbaek, engedal, benth, & bergh, ). at baseline, the mean age of the patients was . years, most of the patients were women ( %), % had poor or very poor physical health and % of the patients used psychotropic drugs on a daily basis. twenty-five % of the patients had mild dementia, % had moderate dementia and % had severe dementia, according to the cdr scale. nearly all of the patients exhibited clinically significant neuropsychiatric symptoms (selbaek, engedal, benth, et al., ). . neuropsychiatric symptoms symptoms such as apathy, agitation, depression and disinhibition are part of dementia. approximately – % of people with dementia develop at least one of these symptoms during the course of their dementia disorder (selbaek, engedal, & bergh, ). these symptoms cause discomfort for a person with dementia, and they are predictors of falls for patients in nursing homes, causing considerable morbidity and mortality (sylliaas, selbaek, & bergland, ). furthermore, they are associated with the use of psychotropic medications (ruths et al., ), which may have negative side effects. the symptoms represent a strain on the family (bergvall et al., ) and they may be stressful for the staff in institutions (zwijsen et al., ). different terms have been used for the symptoms. these symptoms differ from cognitive dysfunction, so the term “non-cognitive symptoms of dementia” has been used. the terms “behavioural disturbances” and “challenging behaviour” refer to altered behaviour. the term “behavioural and psychological symptoms of dementia” (bpsd) was proposed at the international psychogeriatric association’s (ipa) initial consensus conference in . at present, the term “neuropsychiatric symptoms of dementia” is used frequently in the literature and is therefore used in this thesis. . . prevalence of neuropsychiatric symptoms among nursing home patients in previous international studies, agitation and apathy were reported to be the most prevalent symptoms in patients with dementia in nursing homes (aalten, de vugt, jaspers, jolles, & verhey, ; ballard et al., ). wetzels et al. ( ) found that agitation, irritability and aberrant motor behaviour were the most prevalent symptoms (wetzels, zuidema, de jonghe, verhey, & koopmans, a). bergh et al. ( ) assessed patients from seven norwegian nursing homes at five time points over a period of months (bergh, engedal, roen, & selbaek, ) using the neuropsychiatric inventory (npi) (cummings et al., ).this study showed that irritability was the most common neuropsychiatric symptom ( %), while aggression / agitation was the second most prevalent symptom ( %). almost every patient ( . %) had at least one clinically significant neuropsychiatric symptom during the -month period, but individual neuropsychiatric symptoms exhibited a fluctuating course (bergh et al., ). the findings reported by bergh and colleges ( ) largely agree with the results of the norwegian nursing home study of selbaek and colleges from , except that bergh et al. found no change in the severity of individual symptoms. selbaek et al. ( ) found that irritability ( %), apathy ( %) and agitation ( %) were the most prevalent and persistent symptoms during the study period and that these symptoms increased in severity during the follow-up period. depression and anxiety became less severe. furthermore, selbaek et al. ( ) found that more severe dementia was associated with more severe agitation, psychosis and apathy but not with more severe depression and anxiety. increased severity of psychosis was associated with mild dementia, while moderate or severe dementia was associated with a decrease in the severity of psychosis during the follow-up period (selbaek, engedal, benth, et al., ). these inconsistent findings with respect to changes in the severity of individual symptoms may be attributable to the use of different statistical methods (e.g., information about all the patients available during each assessment versus information including only completers in the analysis). in addition, selbaek et al. ( ) had a longer follow-up period ( months) and a larger sample size ( patients with dementia), although both studies used the same scale (npi). in summary, nearly all of the nursing home patients with dementia included in these norwegian studies experienced clinically significant neuropsychiatric symptoms. irritability, agitation/aggression and apathy were most prevalent, whereas hallucinations and euphoria had the lowest prevalence. this agrees with research from other european countries (margallo-lana et al., ; selbaek, engedal, benth, et al., ; wetzels, zuidema, de jonghe, verhey, & koopmans, b; zuidema, koopmans, & verhey, ). table weighted means and range of prevalence, persistence, incidence and cumulative prevalence of studies on neuropsychiatric symptoms in persons with dementia in nursing homes as measured by the neuropsychiatric inventory *wmeans of the prevalence rates (range) apersistence rates (range) bincidence rates (range) ccumulative prevalence rates (range) any one neuro- psychiatric symptom % ( - ) %- % %- % %- % aggression/ agitation disinhibition irritability abberant motor behaviour % ( - ) % ( - ) % ( - ) % ( - ) %- % %- % %- % %- % %- % %- % %- % %- % %- % delusions hallucinations % ( - ) % ( - ) %- % %- % %- % %- % %- % %- % depression anxiety apathy % ( - ) % ( - ) % ( - ) %- % %- % %- % %- % %- % %- % based on studies, median number of participants: (range - ). prevalence studies: a total of patients, longitudinal studies: a total of patients. completed follow-up: a total of patients, follow-up: months- years, - assessments. *wmean: weighted mean; weighting the mean by the number of residents in each study. the wmean age: . years (range - ), mean proportion of women: . % range - ). apersistence (n with symptom divided by n with symptom on the previous assessment) bincidence (n with symptom divided by n without symptom on the previous assessment) *ccumulative prevalence (%): the proportion of patients with a neuropsychiatric symptom at least at one of the assessments. from selbaek, engedal, & bergh, . . types of neuropsychiatric symptoms the neuropsychiatric symptoms are not provided with definitions and diagnostic criteria in the icd- or the dsm- ; thus, definitions based on assessment scales such as the npi are used in the present study. the symptoms included in the npi are described below. delusions a delusion is a false belief, based on incorrect inference about an external reality, that is firmly sustained despite what almost everyone believes, and despite evidence constituting incontrovertible and obvious proof to the contrary (dsm- ). a typical delusion for a person with dementia is that someone has stolen their purse or that their spouse is being unfaithful. hallucinations a hallucination is a perception without apparent stimulus, which appears real to the person experiencing it. hallucinations can affect all five senses, but visual hallucinations are the most common type in patients with dementia. to experience hallucinations is one of the criteria for lewy body dementia, and it affect as many as – % of patients with this type of dementia (engedal & haugen, ). misidentification is common in patients with dementia because of confusion or the misinterpretation of stimuli, which should not be mistaken for a delusion or a hallucination. a person with dementia may think that people on television are real, or they may be frightened of reflections in large windows. a person with dementia may also recall associations from their past and talk about persons that are long dead, which are not signs of delusions or hallucinations (engedal & haugen, ). anxiety people with dementia may experience anxiety as a reaction to their reduced abilities to comprehend the world around them. anxiety may be related to or overlapping with agitation, irritability and aggression (clive-reed & gellis, ). apathy apathy—passivity and lack of initiative—is one of the most prevalent neuropsychiatric symptoms in dementia (selbaek, engedal, & bergh, ). apathy is associated with more rapid cognitive and functional decline, depression and increased mortality (starkstein, jorge, mizrahi, & robinson, ; tagariello, girardi, & amore, ). apathy is one of the core symptoms of fronto-temporal dementia. disinhibition together with apathy, disinhibition is part of the fronto-temporal syndrome, where people exhibit inappropriate behaviour, such as rudeness or aberrant sexual behaviour (engedal & haugen, ). aberrant motor behaviour aberrant motor behaviour is frequent in dementia. the review reported by selbaek and colleges found that % of the people with dementia in nursing homes exhibit this symptom (selbaek, engedal, & bergh, ). this symptom can take many forms, including wandering or incessant drumming with the fingers on a table. sleep disturbances sleep disturbances are more prevalent in people with dementia than in those without dementia. patients may sleep more than others or develop a disturbed sleep pattern because a lack of activity disrupts their diurnal rhythm (engedal & haugen, ). changes in eating this may be changes like developing a constant request food or seemingly lack of hunger. repetitive calling, screaming and hoarding are also common symptoms of dementia (engedal & haugen, ). agitation together with apathy, agitation, aggression or irritation are the most common neuropsychiatric symptoms in people with dementia in nursing homes. in the review reported by selbaek colleges, the mean prevalence of any one agitation symptom measured by the npi was % (range, – %) (selbaek, engedal, & bergh, ). the aetiology of agitation is poorly understood (ballard et al., ), but it is generally considered to be multifactorial, and possible causes include brain changes, genetics, physical diseases (delirium), unmet needs and pain (cohen-mansfield, billig, lipson, rosenthal, & pawlson, ; kovach, noonan, schlidt, & wells, , gauthier et al., ). cohen-mansfield et al. ( ) classified agitation into aggressive behaviours, physical non-aggressive behaviours and verbal agitated behaviour (cohen-mansfield et al., ). aggressive manifestations include cursing or hitting, examples of non- aggressive manifestations are constant requests for attention and pacing (cohen- mansfield, juravel-jaffe, cohen, rasooly, & golander, ). kong ( ) argues that restlessness should be differentiated from agitation because it is described as more continuous and less severe than agitation (kong, ). it has been debated whether aggressiveness should be a subcategory of agitation or regarded as a separate behaviour (cohen-mansfield & billing, ). only a proportion of agitated patients become aggressive (kindermann, dolder, bailey, katz, & jeste, ). there is no consensus on the concept of agitation, including how it is caused and how it should be measured (gauthier et al., , bidewell & chang, ). cohen-mansfield and billing ( ) defined agitation as: “inappropriate verbal, vocal, or motor activity that is not explained by needs or confusion per se” (cohen- mansfield & billig, ). this definition has been used widely in research into agitation in dementia, but it has been criticized for its broadness, the observer’s judgement about the appropriateness of behaviour and ambiguity when distinguishing agitated behaviour from need-driven behaviour (kong, ). according to kong ( ), descriptions of agitation depend on whether the underlying perspective is that of the observer (e.g., “inappropriate” or “disruptive”), the patient (“expression of need”) or a neutral perspective (human response) (kong, ). bidewell and chang ( ) hold that agitation should be considered to be the sum of the person with dementia’s function and the context in which they live, which can be interpreted as unmet needs. in their view, agitation is a form of maladaptive communication, a clinical sign rather than a disorder in itself and a constellation of behaviours rather than a specific behavioural problem. attributing agitation solely to the dementia itself should be the inference of last resort (bidewell & chang, ). according to cohen-mansfield, (cohen-mansfield, ), three theoretical models have generally been applied to understand what was termed “inappropriate behaviours in dementia”: unmet needs model learning and behavioural model environmental vulnerability and reduced stress-threshold model unmet needs model the term “need-driven dementia-compromised behaviour” was proposed by algase and colleges in . they viewed behaviours referred to as “disruptive behaviour” at the time, such as wandering or repetitive questioning, as expressions or embodiments of the goals or needs of the person with dementia. according to the unmet needs model, agitation is the response to a somatic, social or environmental (externally physical) problem (algase et al., ). the unmet needs model contradicts theories that describe agitation as inappropriate verbal or motor activity, which are not attributable to unmet needs (cohen-mansfield & billig, ; cohen- mansfield, culpepper, & werner, ). however, cohen-mansfield & billig ( ) noted that needs could simply be unapparent because of communication or interpretation difficulties (bidewell & chang, ; cohen-mansfield & billig, ). according to algase and colleges ( ), need-driven dementia-compromised behaviour reflects the interaction among the cognitively impaired person’s background factors, including neurological cognitive health status and psychological factors. these factors interact with the physical and social environment, as well as the needs and states within the person. need-driven dementia-compromised behaviour is considered to constitute: “..the most integrated and meaningful response possible, given the limitations imposed by a dementing condition, strengths preserved from the person’s basic abilities and personality, and constraints, challenges, or supports offered by the immediate environment” (algase et al., ). behavioural / learning model in a behavioural or learning model, agitated behaviours is assumed to be behaviours that have been reinforced in the environment, for instance a person with dementia has learned that she or he can get attention by screaming (miesen & jones, ). it has been debated whether this is in line with the quality of care principles because it implies ignoring a person with dementia who seeks attention. this could be considered neglectful, especially if the behaviour reflects deficiencies in care (bidewell & chang, ). also, a person with dementia will have diminished capacity to acquire new behaviours from recent experience (cohen-mansfield, ). environmental vulnerability and reduced stress-threshold model this model is based on a theory of progressively lowered threshold because of neuron loss in the brain resulting in reduced tolerance for stress in the person with dementia. neuropsychiatric symptoms are assumed to be a result of a mismatch between the person’s environment and his or her abilities to cope with the situation (hall & buckwalter, ). depression depression is more prevalent in people with dementia than people without dementia (forsell & winblad, ; rosenvinge & rosenvinge, ). the prevalence of depression among people with dementia is high, irrespective of the degree and type of dementia (barca, engedal, laks, & selbaek, ). the prevalence rate reported in studies and review papers is – % for major depression and – % for minor depression or depressive symptoms (barca, engedal, laks, & selbaek, ; selbaek, engedal, & bergh, ). the incidence rate in nursing home patients in norway has been found to be % in one year (barca et al., ). studies in nursing homes have reported rates of depression between . % and % (barca et al., ; selbaek et al., ). in a recent norwegian study of nursing home patients, depression was found in % of the recently admitted patients (within three months) according to the icd- criteria and in % according to the cornell scale for depression in dementia (csdd) (a summed score of ) (iden, engedal, hjorleifsson, & ruths, ). in a -month prospective cohort study based on four measurements in norwegian nursing homes, selbaek and colleges found a persistence rate of depression of % in the two last intervals (selbaek, engedal, benth, et al., ). diagnosis of depression in dementia depression can be diagnosed based on the clinical criteria in the icd- (who, ) or the dsm- (american psychiatric association, ). icd- classifies dementia as mild, moderate or severe, whereas dsm- uses the classifications of minor and major depression. according to the icd- criteria, the core symptoms of depression are sadness, loss of interest and lack of energy. additional symptoms include low self-esteem, feelings of guilt, suicidal thoughts, diminished ability to think or concentrate, agitation or retardation, sleeping symptoms and appetite symptoms. the diagnosis of depression requires two or more core symptoms, as well as two or more additional symptoms, for at least two weeks (see textbox ). textbox diagnostic criteria for depressive disorder according to icd- the icd- and dsm criteria were developed for people without dementia. it has been debated whether depression in dementia is different from depression without dementia. some studies find that mood symptoms like depressed mood, guilt, hopelessness and suicidal thoughts are less common in depression in dementia than in depression without dementia (janzing, hooijer, van't hof, & zitman, ; olin, katz, meyers, schneider, & lebowitz, ). however, there is some evidence that people with alzheimer’s disease with depression do not differ from depressed persons without dementia (engedal, barca, laks, & selbaek, ). some studies have reported a relationship between awareness of dementia and depressed mood and diminished quality of life (harwood, sultzer, & wheatley, ; a: general criteria must be met: g : the depressive episode should have lasted for at least weeks g : there have been no previous manic or hypomanic episodes at any time in the individual’s life g : the episode is not attributable to psychoactive substance use or to any organic mental disorder b: at least two of the following three symptoms must be present: ) depressed mood to a degree that is definitely abnormal for the individual, present for most of the day and almost everyday, largely influenced by circumstances and sustained for at least weeks ) loss of interest or pleasure in activities that are normally pleasurable ) decreased energy or increased tiredness c: an additional symptom or symptoms from the following list should be present, to give a total of at least four ) loss of confidence or self-esteem ) unreasonable feelings of self-reproach or excessive and inappropriate guilt ) recurrent thoughts of death or suicide, or any suicidal behaviour ) complaints or evidence of diminished ability to think or concentrate, such as indecisiveness or vacillation ) change in psychomotor activity, with agitation or retardation (either subjective or objective) ) sleep disturbance of any type ) change in appetite (decrease or increase) with corresponding weight change the depressive episode can be classified by degree: mild: a total of at least four symptoms moderate: a total of at least six symptoms severe: all symptoms in b must be present and at least five symptoms from c must be present, to give a total of at least eight ) severe depressive episode without psychotic symptoms: no delusions, hallucinations or depressive stupor ) severe depressive episode with psychotic symptoms: presence of delusions or hallucinations (not those listed as typically schizophrenic in criterion) or depressive stupor. hurt et al., ), but most studies have shown that there is no relationship between the awareness of reduced capacity in dementia and depression (arkin & mahendra, ). however, the evidence is limited and inconsistent. the symptoms of depression, such as lack of motivation, anhedonia (the inability to experience pleasure from activities usually found enjoyable), anxiety, irritability, agitation, delusions and hallucinations, are more prevalent in people with dementia than in those without dementia, but the overlap of these symptoms with the symptoms of alzheimer’s disease makes it difficult to discriminate the two. in addition, it is unclear whether the similarities between depression and dementia are a result of common underlying processes or of an interaction between the two conditions (barca, selbaek, laks, & engedal, ). depression in dementia is associated with impaired quality of life (gonzalez-salvador et al., ), increased disability (forsell & winblad, ) and higher morbidity and mortality (barca et al., ). because depression and dementia have overlapping symptoms, which can make the diagnosis difficult in people with dementia, an american expert group have developed new clinical criteria for the diagnosis of depression in dementia, which is called “provisional diagnostic criteria for depression in alzheimer’s disease” (pcd- dad) (olin, schneider, et al., ). these criteria require the following. three or more symptoms of depression must be present for at least two weeks. two additional symptoms are included: irritability and social withdrawal. the symptoms must not be present every day, or most of the day. alzheimer’s disease must be present. these criteria have not yet been validated and cannot be used in clinical practice. however, the few studies conducted using these new clinical criteria (pcd-dad) (barca et al., ; vilalta-franch et al., ) found a much higher prevalence of depression compared with studies using the dsm-iv criteria (which were the valid criteria at that time) in the same patient sample (vilalta-franch et al., ). . . assessment scales for neuropsychiatric symptoms assessment scales have been developed that can be used to assess neuropsychiatric symptoms. some of these scales measure many symptoms, whereas others assess one specific symptom. a person with dementia of moderate or severe degree is often no longer able to complete questionnaires or to answer standardized questions, so several assessment scales are based on information and observations obtained from staff or relatives (proxy-based information). several instruments exist, some of which are presented below. scales for assessing different neuropsychiatric symptoms (global scales) the neuropsychiatric inventory (npi) (cummings et al., ) is one of the most widely used scales in dementia research. the original npi (cummings et al., ), contained items: delusions, hallucinations, agitation, depression, anxiety, apathy, irritability, euphoria, disinhibition and aberrant motor behaviour. later, two neurovegetative items were added; i.e., sleep and night-time behaviour disorders, and appetite and eating disorders (npi- version) (cummings et al., ; cummings, ). npi is a proxy-based measure. a version of this scale was used in the present study and is described in detail in paragraph . . . the “behavioural pathology in alzheimer’s disease” scale (behave-ad) (reisberg, auer, & monteiro, ; reisberg et al., ) is another widely used scale, which assesses items that are grouped into seven major categories. it was developed specifically to assess people with alzheimer’s disease, and it considers delusions, hallucinations, activity disturbances, aggressiveness, diurnal rhythm disturbances, affective disturbances, anxieties and phobias. it does not include apathy and irritability, or disinhibition, which is a core symptom in fronto-temporal dementia. each symptom is scored on a four-point scale. the scale comprises a four-point global assessment of the symptoms’ severity and degree of disturbance to the carer and/or danger to the person with dementia. it is a proxy-based scale. scales for measuring agitation in dementia all of the following scales for measuring agitation in dementia are proxy based. the cohen-mansfield agitation inventory (cmai) (cohen-mansfield, ) was designed to assess the frequency of agitated or aggressive behaviours, which are discrete and readily observable. this scale measures the frequency of agitation; i.e., from never (= ) to several times an hour (= ), during the previous two weeks (range – ). the brief agitation rating scale (bars) (finkel, lyons, & anderson, ) is a short form of the cmai, which measures the frequency of items: hitting, pushing, grabbing, wandering, restlessness, repetitive sentences, repetitive mannerisms, complaining, screaming and making strange noises. the norwegian version consists of nine items, the item screaming was left out. this scale was used in our study and is described in detail in paragraph . . . scales for measuring depression in dementia the cornell scale for depression in dementia (csdd) (alexopoulos, abrams, young, & shamoian, ) is a proxy-based scale for assessing depression in patients with dementia. it is a -item scale, which includes mood symptoms, physical signs, behavioural disturbances and vegetative symptoms. this scale was used in our study and is described in detail in paragraph . . . the dementia mood assessment scale (sunderland & minichiello, ) is a scale that was developed specifically to measure depression in people with mild to moderate dementia, and it is not intended for people with severe dementia. the original version contained items, where items – rated the severity of depression and items – rated the overall severity of dementia. the factor structure includes depressive affect, environmental interaction, diurnal patterns, agitation/suspicion and somatic indicators (onega & abraham, ). the ratings are determined by trained interviewers based on information obtained from nursing staff in institutions or from family caregivers if the patient with dementia is living at home. . . psychosocial interventions for neuropsychiatric symptoms the terms “psychosocial treatment” or “psychosocial intervention” are often used interchangeably with “non pharmacological treatment”. in this thesis psychosocial intervention will be used unless another term is used in the text that is being referred to. types of psychosocial interventions there are many types of psychosocial interventions that has been classified in many ways, sometimes similar terms have different contents (see table ). psychosocial interventions may be used at individual or group level. table examples of classification of psychosocial interventions vernooij-dassen et al ) o’neil et al ( ) behaviour oriented simplifying instructions, redirecting patients, increased monitoring, establishing regular routines and modifying environment with visual prompts behaviour management techniques functional analysis of specific behaviours rewards for good behaviour habit training progressive muscle relaxation, communication training behavioural or cognitive-behavioural therapy various types of individualized behavioural reinforcement strategies emotion oriented talking about old times, discussing personal photographs, or undertaking familiar activities with people they recognise cognitive/emotion-oriented interventions reminiscence therapy simulated presence therapy (use of audiotapes made by family members) validation therapy stimulation orientated physical exercise or recreational activities such as music, pets, cooking and hobbies sensory stimulation interventions acupuncture aromatherapy use of fragrant oils from plants light therapy massage and touch music therapy snoezelen multisensory stimulation therapy cognitive oriented group activities, games and puzzles, calendars and clocks other psychosocial interventions animal-assisted therapy physical exercise staff training interventions this term refers to approaches where training courses are provided for internal front- line care staff to help them understand and manage neuropsychiatric symptoms (spector, orrell, & goyder, ). examples include nursing assistant communication skills programmes (mccallion et al., ), staff training in assisted living residences (teri, huda, gibbons, young, & van leynseele, ), training programmes to reduce agitation and the use of restraints on nursing home patients (testad, ballard, bronnick, & aarsland, ). structural approaches structural approaches represent a more comprehensive type of psychosocial treatment, which involves programmes for patient assessment, choice of interventions and evaluation of effect. an example of this is the multidisciplinary care programme treatment routes for exploring agitation (cohen-mansfield, libin, & marx, ). culture change models culture change models are another form of psychosocial treatment. hill et al. ( ) divided culture change models into two categories, as follows. . interventions that target specific effects at the patient level . comprehensive culture change models person-centred care (pcc) is placed in the first category described by hill ( ). however, in the literature pcc is placed in a category of its own (ballard & corbett, ) because it reflects a care philosophy that encompasses every aspect of care for the patient, which affects all levels of the care institution, including the front-line staff and the management (brooker, ). according to stein-parbury et al. ( ), pcc requires a whole-system approach because it involves more than care for individual people (stein-parbury, chenoweth, jeon, brodaty, & haas, ). the second category, comprehensive culture change models, represents the broadest application of culture change, which occurs through comprehensive plans that transform the facility’s decision-making, physical environment, organizational design and leadership practices (hill, kolanowski, milone-nuzzo, & yevchak, ). examples of models in this category are the eden alternative ( coleman et al., ), the wellspring innovative solutions for integrated health care (kehoe & van heesch, ) and the pioneer network (kantor, ). these models were developed in the early s, and they have been adopted by nursing homes in the usa, canada, europe and australia. they share a common emphasis on small living communities, staff empowerment and environments modified to include animals, plants and children. according to hill et al. ( ), pcc is at the core of the culture change movement (hill et al., ). the definition of psychosocial intervention may not be as straight forward as it seems. if it is defined as “any intervention that emphasizes psychological or social factors rather than biological factors” (richter, meyer, mohler, & kopke, ), the focus is on an interpersonal dialogue and communication (i.e., “talking”). according to such a definition, interventions without psychosocial components but solely based on physical or sensory factors are not considered psychosocial interventions (richter et al., ). this excludes interventions like light therapy, which may be labelled “non- pharmacological treatment” rather than “psychosocial interventions”. such a definition differs from others commonly referred to, but allows for reflection on the search for one specific type of psychosocial intervention for one specific neuropsychiatric symptom for persons with dementia in general. emerging evidence shows that psychosocial interventions are most effective when they are individualised and tailored to the specific needs of the patient (cohen-mansfield, ; cohen- mansfield et al., ). evidence for the effect of psychosocial interventions a large body of research describes the efficacy of different types of psychosocial interventions for neuropsychiatric symptoms in dementia. the following is a summary of reviews on the effects of psychosocial interventions that have been published since . reviews that focus on single symptoms, such as apathy or wandering, are not included in this summary. in a comprehensive review, livingstone et al. ( ) included studies with quantitative outcome measures, which were either direct or proxy measures for neuropsychiatric symptoms. the majority of studies were small, and few of the psychosocial intervention approaches led to significant reductions in behavioural issues, while the quality of studies was also limited (livingston et al., ). in a systematic review of non-pharmacological interventions for the management of neuropsychiatric symptoms by ayalon et al. ( ), three rcts and six single-case designs met the inclusion criteria (the american psychological association guidelines). this review concluded that recent cumulative research supported the effectiveness of individually tailored behavioural interventions, interventions that addressed unmet needs, interventions that included caregivers, and bright light therapy. more high-quality research is required to confirm these findings (ayalon, gum, feliciano, & arean, ). a meta review by vernooij-dassen ( ) provided an appraisal of research reviews, which included reviews related to long-term care psychosocial interventions. there were positive effects on behaviour or physical condition, or reduced depression, with behavioural management techniques and behavioural therapy that emphasized pleasant events, cognitive stimulation using information processing rather than factual knowledge to address problems in functioning, and physical activities (such as walking) (vernooij-dassen, vasse, zuidema, cohen-mansfield, & moyle, ). however, methodological weaknesses precluded definitive conclusions. o’neil et al. ( ) analysed systematic reviews of non-pharmacological interventions for dementia. they identified good-quality systematic reviews that each examined a single non-pharmacological intervention and seven good-quality systematic reviews of a variety of interventions used for the treatment of behavioural symptoms. their summary provides a comprehensive review which is summarized below (o'neil et al., ): reminiscence therapy: the seven small rcts of reminiscence therapy identified were insufficient to support the use of this therapy for the treatment of behavioural symptoms of dementia. simulated presence therapy (spt): well-conducted studies were lacking. the evidence that spt reduces behavioural symptoms was inconsistent, and spt may have adverse effects in some patients. validation therapy: the effects of validation therapy in three rcts and other study designs were examined in four systematic reviews. mixed effects were found, and insufficient evidence was found to draw conclusions about the efficacy of validation therapy for behavioural symptoms, depression and the emotional states associated with dementia. acupuncture: no rigorously conducted rcts were found, so no good-quality evidence indicates the benefit or harm of acupuncture for the treatment of behavioural symptoms in dementia. aromatherapy: there is insufficient evidence that aromatherapy may be an effective treatment for agitation and other behavioural symptoms. bright light therapy: six studies, including two rcts, were identified in two systematic reviews. the studies had small sample sizes and were of poor quality, and they did not provide sufficient evidence to draw definitive conclusions about the effects of bright light therapy in managing sleep, behaviour or mood disturbances. massage and touch: two small rcts suggest that hand massage and touch therapy may have beneficial effects compared with no treatment. music therapy: four systematic reviews were found that examined a variety of study designs. three rcts reported reduced aggression, agitation, and wandering while listening to music. other studies found similar reductions in behavioural symptoms, although there was no evidence of long-term effects. all of the studies were limited by methodological issues. overall, well-conducted studies are lacking, but music interventions have the potential to reduce agitation in patients with dementia in the short term. snoezelen multisensory stimulation therapy: six rcts were identified in four systematic reviews. the evidence did not demonstrate a consistent or sustained effect on behavioural symptoms, but the findings were encouraging and warrant more research. behavioural management techniques: seven rcts and two more recent trials identified in three systematic reviews provide some evidence of effect. however, the inconsistent findings, the variety of intervention types, and methodological concerns suggest that more research is needed to confirm these results. animal-assisted therapy: no rcts have evaluated the effectiveness of this therapy, but nine non-randomized studies of pet therapy were found. the findings suggest that pet therapy has positive potential effects, but more rigorous studies are needed. exercise: three systematic reviews identified studies with inconsistent effects. the studies varied in the intensity of the exercise intervention, the severity of dementia and the outcome measures evaluated, as well as methodological limitations, which made it difficult to reach firm conclusions. in summary, mainly because of methodological limitations, it is difficult to draw firm conclusions about the effects of different types of psychosocial interventions on neuropsychiatric symptoms. many of these approaches are potentially beneficial, but their sustainability or feasibility appears to be limited. staff training interventions staff training is an approach that aims to reduce neuropsychiatric symptoms in patients by improving the knowledge, attitudes or skills base of the care staff. evaluations and comparisons of these interventions are difficult for two main reasons. first, there is no consistent measure of success. second, some studies evaluated the effects on the neuropsychiatric symptoms of patients, whereas others focused on the effect of training on changes in the knowledge or attitudes of different staff groups staff (mccabe, davison, & george, ). the following is a summary of reviews published since . aylward et al. ( ) reviewed previous general studies of the effectiveness of continuing education programmes in long-term care. of the studies reviewed, focused on mental health and behaviour. the results showed that educational initiatives were somewhat effective in the short term. however, there was minimal evidence that the knowledge was sustained in the long term because of a lack of follow-ups (aylward, stolee, keat, & johncox, ). kuske et al. ( ) reviewed studies of the effectiveness of in-service training in dementia care. only two studies used patient outcomes, whereas the remainder ( studies) examined staff-level outcomes. eight of these studies measured the effectiveness at the staff and patient levels. most reported positive effects, but the methodological quality was low, and the results must be interpreted with caution. the main outcome measure at the patient level was change in the rate of inappropriate behaviour ( % of studies). three randomized studies had relatively good methodological quality, with one reporting significantly reduced agitation and another detecting significantly reduced depression in patients. extensive interventions with ongoing support demonstrated the sustained implementation of new knowledge among staff. in simpler interventions, there was little or no evidence for the transfer of knowledge when no reinforcing factors were provided (kuske et al., ). a review by mccabe et al. ( ) examined intervention studies that aimed to increase the knowledge or skills of staff. however, the outcome measures used in most of these studies also focused on the impacts on the behavioural problems of patients. many of these studies had limitations in terms of the research design, which made it difficult to evaluate them and to reach any conclusions about their effectiveness. the studies were classified according to whether the research design did or did not include a control group. the results of interventions with control groups seemed to indicate that the training programmes had a positive impact on patient functioning, including a reduction in the severity of behavioural symptoms. continuing refresher courses may be required for these changes to be sustained (mccabe et al., ). levy-storms ( ) reviewed research on the effectiveness of staff training on nursing aides' therapeutic communication in institutional long-term care settings. the literature review covered papers from to , of which were rcts and three of which included pre–post tests. the number of staff participants ranged from to , and the number of patients ranged from to . they concluded that some evidence existed to support the hypotheses that therapeutic communication techniques can be taught and that verbal and non-verbal communication behaviours, such as open-ended questions, positive statements, eye contact, affective touch and smiling, can benefit the quality of life of patients. ongoing dedicated supervision of the psychosocial aspects of care was needed (levy-storms, ). vasse et al. ( ) reviewed research on staff communication techniques used in daily routines, which comprised two rcts and three non-rcts. the number of staff participants ranged from to , and the number of patients ranged from to . the findings indicated that care staff can improve their communication with patients with dementia if strategies are embedded in their daily care activities or if the interventions are single-task sessions at set times. improvements might be obtained in the quality of care, but not direct reductions in neuropsychiatric symptoms. they concluded that more research is needed to study the effects of communication interventions on neuropsychiatric symptoms (vasse, vernooij-dassen, spijker, rikkert, & koopmans, ). spector et al. ( ) considered studies in their review of staff training interventions, which comprised rcts and seven non-randomized studies. the quality of the available evidence was regarded as poor, which led to inconsistencies in the findings, and this made it difficult to reach firm conclusions that might agree with earlier reviews. seven rcts found that the training interventions were effective in reducing neuropsychiatric symptoms, and three reported positive trends but no significant results. this review concluded that there is evidence that staff training programmes can reduce neuropsychiatric symptoms in people with dementia who live in nursing homes (spector et al., ). in summary, some evidence exists to support the hypothesis that staff training has an effect on patient outcomes. many reviews recommend the provision of ongoing support to staff so that the effects can be sustained. culture change models there is little published evidence of the effects of culture change models. an evaluation of the wellspring model reported a better quality of life for patients, although the evaluation suffered from limited data quality and confounding organizational factors (stone et al., ). a review of the literature related to the eden alternative found that previous research was very limited in terms of size and academic rigour, which prevented it from providing adequate empirical evidence. these studies were descriptive, quasi-experimental or case studies (petersen & warbuton, ). munroe ( ) stated that the early phases of a culture change process last for approximately three years, which may be a barrier to evaluation. identifying the outcomes of these evaluations was also challenging (munroe, kaza, & howard, ). . . pharmacological treatment of neuropsychiatric symptoms pharmacological treatments and their evidence base for the treatment of neuropsychiatric symptoms are described briefly because they are not the focus of the present thesis. classes of psychotropic drugs different classes of psychotropic drugs are available for the pharmacological treatment of neuropsychiatric symptoms, such as anti-psychotics or anti-depressants. the use of newer psychotropic drugs, including atypical anti-psychotics, selective serotonin reuptake inhibitors (ssris) and hypnotics (z-hypnotics), has increased in nursing homes because of their apparently more favourable safety profiles (lovheim, sandman, karlsson, & gustafson, , ruths et al., ). atypical anti-psychotics, such as risperidone and apriprazole, are also known as second-generation anti- psychotics. this group of anti-psychotic tranquilizing drugs is used to treat psychiatric conditions such as depression and psychotic agitation in persons with dementia. atypical anti-psychotics are claimed to differ from typical anti-psychotics because they are less likely to cause extrapyramidal motor control disabilities in patients, such as parkinson’s-disease-type symptoms (body rigidity and involuntary tremors) (culpepper, ). prescription of psychotropic drugs in nursing homes ruths and colleges ( ) analysed six cross-sectional studies conducted in norwegian nursing homes between and , which included , patients (mean age, . years; . % women). this study showed that the prevalence of prescribing psychotropic drugs had increased considerably in nursing homes, especially regarding anti-depressants, which had a prevalence of . %. for the treatment of neuropsychiatric symptoms, the overall prevalence of all psychotropic drugs was . %, anxiolytics accounted for . % and hypnotics comprised . %. the prevalence of anti-psychotics varied between . % and . %. the predictors of use of psychotropic drugs were female gender (except anti-psychotics), age > years and residency in scus (except hypnotics) (ruths et al., ). evidence for the effects of pharmacological treatments a brief description of the evidence for the effects of pharmacological treatments on neuropsychiatric symptoms is presented below. agitation and aggression the meta-analysis by ballard & waite indicated that atypical anti-psychotic drugs were the only effective psychotropic drugs for the treatment of aggression in people with alzheimer’s disease (ballard & waite, ). however, this review also reported that the effect was moderate and that these treatments had severe adverse effects, such as sedation, falls, extrapyramidal symptoms, cardiovascular and anti-cholinergic symptoms and increased mortality. in their review of the evidence in , ballard et al. found that further clinical trials of pharmacotherapy for agitation and aggression in alzheimer’s disease were needed, although preliminary data indicated that memantine, citalopram and carbamazepine might be promising alternatives to atypical anti-psychotics. the review concluded that the use of anti-psychotic medications should be limited to short-term treatment (up to weeks) in most situations (ballard & corbett, ). depression little evidence supports the efficacy of anti-depressants for mild or moderate depression and for depression with coexisting dementia (banerjee et al., ; nelson & devanand, ). a prospective study indicated the high persistence of depression in nursing home patients, regardless of whether they were treated with anti-depressants (barca et al., ). lindstrøm demonstrated that anti-depressants could be successfully withdrawn from half the patients on long-term treatment (lindstrom, ekedahl, carlsten, martensson, & molstad, ), whereas bergh et al. detected an increase in depressive symptoms when anti-depressants prescribed for neuropsychiatric symptoms without depression were withdrawn (bergh, selbaek, & engedal, ). neuropsychiatric symptoms in general seitz et al. ( ) conducted systematic review of pharmacological treatments for the neuropsychiatric symptoms of dementia in long term care based on parallel group randomized controlled trials (rcts). most participants had moderate to severe dementia. twenty-nine rcts were included in the review ( , participants in total; range, – ). compared with the placebo, statistically significant improvements in neuropsychiatric symptoms were reported by some trials that assessed the efficacy of the atypical anti-psychotics risperidone (two of six trials) and olanzapine (two of four trials). twenty-one studies assessed withdrawals due to adverse events. significantly higher rates of withdrawals due to adverse events were detected by single trials for risperidone and olanzapine compared with the placebo. twenty-three trials assessed mortality, and one study reported that the mortality was significantly higher with risperidone than the placebo (seitz et al., ). table -i effect and side effects of psychotropic drugs in the treatment of behavioural symptoms in dementia type of medication evidence of effect evidence of effect of removal authors the affective sub syndrome: depression and anxiety selective serotonin re-uptake inhibitors or serotonin-specific reuptake inhibitor (ssris) antidepressants low grade evidence for effect on depression in persons with mild/moderate dementia severe depression in alzheimer’s disease: some effect mild depression in alzheimer’s disease: no effect depression in other dementias lack of studies bains, birks, & dening, , edhag & norlund, lyketsos & olin, the agitation sub syndrome: agitation/ aggression disinhibition irritability ssris some singular trials have shown that ssris have effect on symptoms like agitation and psychosis, but no reviews show this studies on withdrawals: % got more agitated after withdrawal of ssri compared to those who continued conventional antipsychotics limited effect on psychotic symptoms haloperidol reduces aggression but not agitation caution must be taken because of side effects cholinesterase inhibitors very limited effect reduces neuropsychiatric symptoms in alzheimer’s disease bergh et al., schneider, pollock, & lyness, lanctot et al., lonergan, cameron, & luxenberg, trinh et al., table -ii effect and side effects of psychotropic drugs in the treatment of general neuropsychiatric symptoms in dementia type of medication evidence of effect evidence of adverse effect evidence of effect of removal authors neuropsychiatric symptoms cholinesterase inhibitors reduces neuropsychiatric symptoms in alzheimer’s disease. limited effect antiepileptic limited effect tariot et al., ,trinh, hoblyn, mohanty, & yaffe, lonergan & luxenberg, amann et al., psychotic symptoms in dementia conventional antipsychotics limited effect side effects: stroke, death, parkinsonism akatisi, tardive dyskinesia, acute dystonia central anticholinerg effect, ortostatisme, malign nevroleptic syndrome (mns) atypical antipsychotics olanzapine better effect than placebo risperidone better effect than placebo aripiprazol better effect than placebo olanzapin, risperidon, quetiapin no difference compared to placebo side effects higher risk of stroke and mortality compared to placebo. cholinesterase inhibitors reduce psychotic symptoms in lewy body dementia schneider et al., rochon et al., seitz et al., street et al., , brodaty et al., mintzer et al., lee et al., schneider, dagerman, & insel, , rochon et al., mckeith et al., . quality of life in people with dementia in recent years, greater efforts have been made to consider and explore the subjective experiences of people with dementia (mccabe & ; sloane et al., ). describing how care affects the quality of life has become an important outcome measure in research (banerjee et al., ; kane et al., ; thorgrimsen et al., ). definitions of quality of life quality of life is a concept that has been much debated. it is difficult to define, and possibly more so with regard to persons with dementia. the who has defined quality of life as an “individual’s perceptions of their position in life in the context of the culture and value system in which they live, and in relationship to their goals, expectations and standard” (who, ). this definition implies communication of one’s perceptions, which is problematic for people with cognitive impairment. deficits in memory, attention and language may affect the individual’s ability to communicate their subjective state coherently. however, it has been shown that people with mild to moderate dementia can report their quality of life (arlt et al., ; brod, trigg, jones, & skevington, ), as well as those with severe dementia, to some extent (thorgrimsen et al., ). in the field of dementia research, quality of life has been defined as the integration of cognitive functioning, activities of daily living, social interactions and psychological well-being (whitehouse et al., ). lawton’s model (lawton, ) has been the pervasive conceptualization of quality of life in dementia (moyle, gracia, murfield, griffiths, & venturato, ). lawton described quality of life in people with dementia as a combination of two external dimensions and two internal dimensions. the two external dimensions are as follows. . behavioural competence, defined as a person’s ability to evaluate and participate in social gatherings . external environmental factors that can be evaluated physically and socially the two internal factors are as follows. . the person’s subjective self-image . the environment evaluated using subjective criteria most researchers describe the quality of life of people with dementia as a multidimensional concept with subjective and objective values (lawton, ; moyle & murfield, ). quality of life, neuropsychiatric symptoms and degree of dementia studies based on proxy information have shown that the quality of life of a person with dementia living in a nursing home decreases as their neuropsychiatric symptoms increase, especially depression and anxiety (banerjee et al., ; barca, engedal, laks, & selbaek, ; beerens, zwakhalen, verbeek, ruwaard, & hamers, ; shin, carter, masterman, fairbanks, & cummings, ). the literature provides no clear understanding of the relationship between the degree of dementia and the quality of life (banerjee et al., ; beerens et al., ). some studies have reported an association between the severity of cognitive impairment and reduced quality of life (barca et al., ; lyketsos & olin, ), whereas others have found no such association (hoe, hancock, livingston, & orrell, ; hoe, katona, roch, & livingston, ). there are vast individual differences in the quality of life of people with dementia and wide variations in their quality of life over time (vogel, bhattacharya, waldorff, & waldemar, ). . . assessment scales for the quality of life of people with dementia some of the scales developed for assessing the quality of life of people with dementia are presented below. the quality of life in late-stage dementia (qualid) scale (weiner et al., ) is an instrument used to rate the quality of life in persons with late stage alzheimer’s disease and other dementing illnesses. qualid is a proxy-based scale, which records the frequency of observable behaviours in a person with dementia during the previous week. this scale was used in our study and is described in detail in paragraph . . . the quality of life – alzheimer’s disease (qol-ad) scale (logsdon et al., ), is a scale that was designed specifically to assess the quality of life of people with alzheimer’s disease. it is completed by the person with dementia and the caregiver. internationally, the qol-ad scale is one of the most widely used self-reported measures (whitehouse, patterson, & sami, ). caregivers complete a questionnaire about the patient’s quality of life and the person with dementia is interviewed about their own quality of life. people with mild to moderate alzheimer’s disease (mini mental state examination scores of or higher) can usually complete it without any problems. a four-point likert scale, which ranges from = “poor” to = “excellent”, is used to rate each item. the measure yields a single mean score, which ranges from – , where higher scores indicate a better quality of life. the dementia quality of life questionnaire (dqol) (brod et al., ) is an interviewer-administered self-reporting instrument, which measures the quality of life from the perspective of the person with dementia. this instrument has items, which address five domains of the quality of life: self-esteem, positive affect, absence of negative affect, feelings of belonging and sense of aesthetics. it also includes a final item, which captures an optional global measure of quality of life. the items are rated on one of two five-point likert scales, which measure either frequency (from = “never” to = “very often”) or enjoyment (from = “not at all” to = “a lot”). the scores for each subscale are calculated by computing the mean score of the component items. the optional single item for assessing the overall quality of life is also rated on a five-point scale, which ranges from = “bad” to = “excellent”. higher scores indicate a better quality of life. . person-centred care (pcc) tom kitwood introduced the concept of pcc (kitwood, a) around , and this social–psychological care philosophy, which focuses on personhood in dementia, has since been endorsed and advocated by politicians and health administrations as a central component of quality care (abdelhadi & drach-zahavy, ). from the perspective of kitwood, the question is: “whether some of the neuropsychiatric symptoms of dementia might be due more to a failure of understanding and care than to a structural failure of the brain of the person with dementia” (kitwood, a)(p ). one of kitwood’s first studies explored the subjectivity and interpersonal processes of dementia. he wanted to make a transition from an “organic mental disorder to “the social psychology of dementia” (kitwood, a)(p ). kitwood suggested that the clinical manifestations of dementia may be understood as arising from a complex interaction between personality, biography, physical health, neurological impairment and, not least, the social psychology that permeates the environment (kitwood, ). attempts to provide positive interventions had already emerged before kitwood presented the pcc, such as reality orientation (taulbee & folsom, ), validation therapy (feil, , ), reminiscence (butler, ; coleman, ), and sensory stimulation (threadgold, ). kitwood found these approaches encouraging but considered that they lacked a coherent theoretical basis. he stated: “progress will occur much faster if there is a clear theoretical frame; a good care needs to find a voice” (kitwood, a)(p ). kitwood drew on the ideas and practices of psychotherapy, with an emphasis on rogerian psychotherapy in authentic contact and communication (rogers, , ). the term “person-centred care” was selected to reflect these principles (brooker, ). the cornerstone of pcc is the concept of personhood, other elements include basic psychological needs, malignant social psychology and positive person work, which are described below. personhood to identify an appropriate basis for developing a theory of dementia care, kitwood posed the old philosophical question: “what is the state which we might properly call being a person?” (kitwood & bredin, b). personhood should be viewed essentially as social , and that it is provided or guaranteed by the presence of others (kitwood & bredin, b). according to kitwood, the concept of personhood is linked to transcendence, ethics and social psychology; a being is sacred in itself (transcendence), each person has absolute value (ethics), the place of an individual in a social group is linked to given roles and self-esteem (social psychology) (kitwood, a)(p ). kitwood relied heavily on the arguments of stephen post ( ) that the emphasis on autonomy and rational capacity in western society is gravely misplaced (post, ). kitwood made a clear separation between personhood and cognitive ability, and he contended that personhood should instead be linked more strongly to emotion and relationships, which is a view that renders patients with dementia as competent persons (kitwood & bredin, b). martin buber is another philosopher with a great influence on kitwood’s concept of personhood. buber contrasted an i–it relationship, which implied coolness, detachment and instrumentality, with an i–thou relationship, which implied going out towards the other, self-disclosure and spontaneity (buber, )(p ). based on these pillars, kitwood defined personhood as: “a standing or status that is bestowed upon one human being, by others, in the context of relationships and social being. it implies recognition, respect and trust.” (kitwood, a)(p ). he stated that not being recognized as a person could cause severe ill-being, or even a state of vegetation. he predicted that not being recognized as a person would erode the global psychological states that are fundamental for all human beings; i.e., self- esteem, sense of agency, social confidence and hope (kitwood, a). malignant social psychology the i–it relationship of buber brings us to kitwood’s concept of malignant social psychology. this term refers to the effects of a social psychology with exclusion and the devaluation of persons with dementia. although unintended, this is a consequence of the (unconscious?) view that those affected with dementia are not real people anymore. kitwood made observations of nursing home care to describe the type of interaction that constituted this depersonalization, which undermined the personhood of patients with dementia. this resulted in a list with elements (op.cit pp - ), some of these are cited in textbox . textbox indicators of malignant social psychology treachery: using deception to distract, manipulate or force into compliance disempowerment: not allowing a person to use their remaining abilities infantilization: patronizing a person in that same manner that an insensitive parent might treat a very young child intimidation: inducing fear labelling: using the category of dementia as the main basis for the interaction with a person and for explaining their behaviour stigmatization: treating a person like a diseased object or an outcast outpacing: providing information at a rate too fast for the patient to understand, or putting them under pressure to perform tasks more rapidly than they can bear objectification: treating a person like a lump of dead matter that needs to be pushed, lifted or fed ignoring: continuing a conversation or action in the presence of a person as if they were not present adapted from kitwood basic psychological needs after describing practical examples in care where personhood was undermined, the next step was to improve the quality of interaction so that personhood could be enhanced. according to kitwood, the main task for dementia care is to maintain personhood in the face of declining cognitive abilities and mental powers. he described the life and emotions of people with dementia as intense and lacking in the normal forms of inhibition; i.e., “in tune with the body and closer to the life of instinct” (kitwood, a)(p - ). he considered a cluster of five very closely connected needs as expressions of the one and all-encompassing need, our need for love. these five needs are: comfort, attachment, inclusion, occupation and identity (op.cit p ). although common to all human beings, these needs were seen as more obvious in people with dementia, who are clearly dependent on others and less able to take an initiative that would lead to their needs being met. these needs were described as follows. comfort comfort is defined as tenderness, closeness, the soothing of pain and sorrow, the calming of anxiety and the feeling of security that comes from being close to another. a person with dementia must deal with all the losses that come with diminishing cognitive abilities, so their need for comfort is often especially great. attachment this is an instinct-like need, which is particularly associated with early childhood (bowlby, ). attachment creates a type of safety net when the world is experienced as full of uncertainties and anxieties, and it provides the sense of security and reassurance needed for a person to function well. miesen ( ) suggested that people with dementia continuously find themselves in situations that they experience as “strange”, which activates the attachment need very strongly (miesen, ). inclusion as human beings, we are social in nature, so being part of a group is essential. the need for inclusion is strong for all human beings, and being excluded and ignored may take away a person’s confidence and result in depression. a person with dementia often loses the abilities needed to take social initiative, which makes them more vulnerable. occupation kitwood described occupation as being “involved in the process of life in a way that is personally significant and which draws on a person’s abilities and powers” (kitwood, a)(p ). identity identity is defined as knowing who you are in terms of both cognition and feeling. this implies a sense of continuity with your past, but it is also influenced by the subtle messages about yourself conveyed by others. positive person work kitwood’s term “positive person work” refers to types of positive interactions that enhance personhood. in line with the list describing malignant social psychology, he made another list with types of positive interactions that constitute positive person work; some of these are cited in textbox . textbox indicators of positive person work recognition: to be acknowledged as a unique person. this may be achieved by greeting a person by name, listening to a person over a long period or by making eye contact. negotiation: consultation with a person with dementia about their preferences, thereby giving highly dependent people some degree of control over everyday issues and the care they receive collaboration: working together by involving the initiative and abilities of a person with dementia in their daily activities and personal care validation: validating the experience of a person with dementia by acknowledging that their emotions and feelings are real to them and providing responses to them, irrespective of the lack of correspondence with the current reality facilitation: helping a person to perform tasks that they cannot achieve without assistance; to provide support with the components of an activity that are lacking, but only those components adapted from kitwood dementia care mapping (dcm) kitwood worked closely with kathleen bredin, and they published the main body of their work on pcc between and . they started the development of dcm, which is a method for evaluating the quality of care in formal settings with a focus on the perspective of the person with dementia. dcm incorporates the observations of malignant social psychology, the five basic psychological needs and positive person work (kitwood & bredin, a). dcm is most likely the most well known model for implementation of pcc. it is an observational tool that consists of standardized coding of the patients’ well-being and behaviour and descriptions of interaction between staff and patients. dcm is delivered as a cyclic intervention with systematic observation, feedback to staff resulting in action plans to make changes in the care based on the observed needs of the patient. staff must attend the basic and advance training courses and pass exams to be certified dementia care mappers. the training enables the mappers to observe, report and provide feedback to staff and to assist the staff in making action plans (brooker & surr, ). the perspective of the persons with dementia kitwood posed the hypothesis that contact with persons with dementia takes people out of their customary pattern of hypercognitivism and draws them into a way of being where emotion and feeling have larger roles. in his view, good dementia care requires an exploration of what the experience of dementia might be like and using this perspective to develop forms of interaction that enhance personhood (kitwood & bredin, b). the uniqueness of each individual’s experience of dementia is related to personality and defence processes. kitwood outlined routes for obtaining insights into the subjective world of dementia, including listening carefully to what people with dementia say and attending carefully and imaginatively to their utterances and attempts at action (kitwood, b). although it is impossible to enter fully into another person’s frame of reference, empathy represents an attempt to understand what a person is conveying by drawing on our own experience: “not feeling their emotions, but feeling the resonances of those emotions within ourselves” (kitwood, b)( p. ). . . the vips framework for pcc for people with dementia the publication of kitwood’s book “dementia reconsidered: the person comes first” in marked a watershed in dementia care. pcc became synonymous with quality care. however, the term pcc has often been used synonymously with “individualized care” since it was first proposed by kitwood, and the emphasis on relationships has been lost (brooker, , ). dawn brooker, who worked closely with kitwood at bradford university in england, published the paper “what is person-centred care in dementia?” in , which proposed the much-welcomed vips framework to clarify what constituted pcc (brooker, ). the acronym vips (commonly understood as “very important persons”) synthesizes the different threads that emerged in the literature and the rhetoric of pcc, while still maintaining the sophistication of kitwood’s original ideas. it describes pcc as having four major elements: valuing persons with dementia individualized care the perspective of the person with dementia social inclusion given the complexity of defining pcc, it was considered helpful to delineate a set of practical indicators against which care providers could benchmark their services. pilot indicators were reviewed by around care providers and service user organizations worldwide to arrive at a detailed description of what a pcc provider should have in place. this list of indicators is grouped around the four elements of the definition set outlined above (textbox ). textbox the vips framework with six indicators for each element of person- centred care v does where we work show value and respect for the experiences of people with dementia and their families? . does where i work feel welcoming to people with dementia and their families? . does where i work value good quality direct care for people with dementia and their families? . does where i work empower staff to act in the best interests of people with dementia and their families? . is our work-force skilled in person-centred dementia care? . generally are our physical and social service environments easy for people with dementia and their families to use? . does where i work, know about and act upon the needs and concerns of people with dementia and their families? i are systems in place to enable staff to get to know the person and to ensure the person feels like a unique individual? . do i know this person’s strengths and needs? . am i alert to changes in this person? . do i know what personal possessions are important to this person? . do i know this person’s likes and dislikes and preferred everyday routines? . do i know this person’s history and key stories? . do i know how to engage this person in an enjoyable activity for them? p have we taken time to understand the perspective of the person with dementia and their family. . do i check out preferences, consent and opinions? . do i try to imagine how this person is feeling? . do i make the physical environment as comfortable as possible for them? . am i vigilant about physical health needs that the person may not be able to tell me about? . if the person is showing “challenging behaviour” do i try to understand why and what the person may be trying to communicate? . am i treating the rights of the individual with dementia as important as the rights of other people in the same situation? s are we providing a supportive social psychology to enable the person to feel socially confident and that they are not alone? . do i help the person feel included and not “talked across”? . am i treating this person respectfully and not using a “telling-off” tone or using labels to describe people? . do i come across as warm and caring and not cold and indifferent? . do people know that i take their fears seriously and not leaving people alone for long periods in emotional distress? . do i help people to be active in their own care and activity as far as possible and not just do things to people without communicating with them? . do i try to help the person use local community facilities and make sure that they can stay in touch with people and activities they value? brooker . . criticism of pcc and related theories pcc has been very influential in the field of dementia care, but it has also received some criticism. according to dewing ( ), who wrote her doctoral thesis on kitwood’s work, kitwood’s writings failed to address fully the person as an embodied being, despite clearly rejecting cartesian dualism. however, kitwood’s work on malignant social psychology and positive person work had a focus on the lived experience that partly encompassed this aspect (dewing, ). there are objections to kitwood’s emphasis on the concept of personhood. in the philosophical literature, the term “personhood” includes attributes that are required to be considered as a person (dresser, ; singer, ). thus, it follows that it is possible to be judged as a lesser person or not having personhood (not being a person). as a consequence, it might be argued that kitwood’s philosophy of care for people with dementia is built on a concept where it is implied that a human being may be disqualified from being a person. referring to post, (post, ) dewing ( ) suggested that it would have been better if kitwood had rejected the concept of personhood altogether and rather focused on radical human equality (dewing, ). kitwood’s own concern that pcc may remain more word than deed (kitwood, a; nolan, ) was echoed by nolan who posed the question: “how do we know pcc when we see it, and what must we do to achieve it?” (nolan, ). this concern was also acknowledged by kitwood’s successor, dawn brooker, who developed the vips framework (brooker, ). kitwood’s pcc has also been criticized by nolan and colleges for not capturing the interdependencies and reciprocities that underpin caring relationships for older persons (nolan, enderby, & reid, ). nolan argued that kitwood’s vision had been lost and that the focus of pcc on individuality and autonomy would further marginalize those living and working in care homes (nolan, davies, & brown, ). nolan and colleagues proposed relation-centred care as an alternative that could be applied using the senses framework (nolan, davies, brown, nolan, & keady, ) which summarizes its key principles. this framework comprises six senses, which capture subjective and perceptual aspects of care that should be experienced by both patients and staff: a sense of security, continuity, belonging, purpose, achievement and significance. the aim of relation-centred care is to meet the needs of patients, their families and staff. dewing ( ) did not agree with this criticism and suggested that, although it could have been stated more clearly, kitwood’s ultimate purpose of moral concern for others includes family, carers and staff (dewing, ). the recovery-based approach to dementia care nursing (gavan, ) is derived from the recovery model of mental health nursing (caldwell, sclafani, swarbrick, & piren, ). this approach proposes the expansion of pcc by the addition of “taking a more optimistic outlook by framing and informing nursing practice with notions of hope” (gavan, ). this is achieved by assessing a person’s strengths, which enhances the positive aspects of dementia care nursing (adams, ). recovery is described as managing wellness, recovering identity, managing lives, and finding a sense of belonging and a meaningful life in the community (davidson & roe, ; martin, ). gavan ( ) criticizes pcc for not having an explicit emphasis on the need for a therapeutic relationship between the nurse and the person with dementia. a therapeutic relationship promotes understanding by “listening to the person’s own story and using it to work with the person in finding ways to address their needs” (gavan, ). pcc does not fully capture the importance of reciprocity, which may lead to an unbalanced relationship, with patronizing and inappropriate care (adams, ; wilson & neville, ). this loss of mutuality leads to the “voice” of the person with dementia being unheard. this, in turn, leads to disempowerment of the person with dementia (gavan, ) and the potential for negative attitudes that reinforce stigma and marginalization within our society (wilson & neville, ). in a review of person-centred gerontological nursing, mccormack ( ) concluded that there has been little research into the meaning of pcc and the impact that it has on users (mccormack, ). according to mccormack ( ), person-centred gerontological nursing (or care) has the following four aspects. being in relationship (social relationships) being in a social world (biography and relationships) being in a place (environmental conditions) being with self (individual values) mccormack ( ) considered personhood, authentic humanistic caring practices that embrace all forms of knowing and acting, and choice and partnership in care decision-making as central components of person-centred gerontological nursing (mccormack, )(p. ). mccormack and mccance ( ) developed a person-centred nursing framework that comprised four constructs. prerequisites, which focus on the attributes of the nurse the care environment, which focuses on the context where care is delivered person-centred processes, which focus on delivering care through a range of activities expected outcomes, which are the results of effective person-centred nursing the relationship between the constructs suggests that the delivery of person-centred outcomes demands a consideration of the prerequisites and the care environment that are required to provide effective care throughout the care process (mccormack & mccance, ). . . evidence for the effects of person-centred care the following describes previous research into the implementation of pcc using rcts. when our study was conducted (spring ), the largest and most recent studies in this field were those of fossey and colleges (fossey et al., ) and chenoweth and colleges (chenoweth et al., ). these studies are of central importance because of their rigorous designs and positive findings (ballard & aarsland, ). fossey and colleges (fossey et al., ) conducted a cluster rct that included patients in specialist nursing homes for people with dementia in england. the main outcome measures were the proportion of patients in each home who were prescribed neuroleptics and the mean levels of agitated and disruptive behaviour measured by the cmai. the intervention comprised weekly training and ongoing support in the application of pcc, care planning and behavioural management techniques for groups and individual staff. the control group received usual care. a medication review was performed by a consultant old-age psychiatrist and a senior member of the nursing home every three months. the study failed to affect the levels of agitation measured by the cmai, but after months of intervention, the percentage of patients who were prescribed neuroleptics in the intervention homes was significantly lower in the intervention group. no manual was provided for the pcc intervention, which means that the educational programme of fossey and colleges ( ) would be difficult to replicate. like many staff training interventions, the training programme was performed by specially trained professionals, so it may be difficult to implement in routine practice where there is limited access to resources (ballard et al., ). the study conducted by chenoweth and colleges (chenoweth et al., ) was a cluster-randomized clinical trial, which included people with dementia in residential care facilities in australia. the patients were assigned randomly to pcc, dcm or usual care. the nursing homes were selected because of their task-focused approach to care, as well as their similar management structures, staffing levels, standards and size. the selection criterion for the patients was persistent need- driven behaviour, which made it difficult for staff to provide them with quality care. the pcc intervention comprised a two-day training session for two staff from each of the five sites. the staff received two visits and regular telephone calls from the researchers to assist the development and implementation of pcc practices. in the dcm intervention, external mappers were used (two of the researchers) in addition to two trained internal care staff. the main outcome was agitation, which was measured using the cmai, while neuropsychiatric symptoms were measured by the npi-nh, and quality of life was measured with qualid. the pcc and the dcm interventions reduced agitation compared with usual care at the end of the four- month treatment phase. there were no effects on the other outcome measures. the study of chenoweth and colleges ( ) has been described as explanatory in character because the interventions were conducted by the researchers, and the settings were well resourced and tightly controlled. van de ven et al. ( ) suggest that this form of implementation does not address the demand for evidence about real-world risks (van de ven et al., ). to employ usual care as the control condition has been criticized because there will probably be non-specific benefits from being part of a study. an education-alone comparator might be better because it will probably have a minimal effect, but it can control for the non-specific benefits (ballard & aarsland, ). the cluster rct conducted by van de ven and colleges (van de ven et al., ) tested the effectiveness of dcm in scus for people with dementia in nursing homes including patients. two nurses from each intervention nursing home were trained and certified as dementia care mappers. similar to the study by chenoweth and colleges ( ), the control group received usual care during the four-month trial. the main outcome measure was agitation, which was measured by the cmai, while neuropsychiatric symptoms were measured using the npi-nh. the quality of life was measured using qualidem, which is a dementia-specific quality of life instrument from the netherlands (ettema et al., ). this pragmatic trial did not confirm the effect of dcm on agitation reported by chenoweth et al. ( ). the results showed that there were more neuropsychiatric symptoms in the intervention group compared with the usual care group, but there were no significant effects on the quality of life of patients. dawn brooker applied the vips framework in the enriched opportunities programme for people with dementia (eop), which is a multilevel intervention that focuses on improving the quality of life for people with dementia. the programme includes: a specialist staff role (“the eop locksmith”), staff training, individualized case work, liaison with health and social care teams, activity and occupation, and leadership (brooker, woolley, & lee, ). a repeated measures within-patients design was employed, where data were collected at three points over a -month period at each facility with a follow-up – months later. participants were patients with a diagnosis of dementia or enduring mental health problems in three specialist nursing homes in the uk. dcm was used to observe well-being, the quality of life was measured using the dqol instrument (brod et al., ) and depression was measured using the csdd. a statistically significant increase in the levels of observed well-being and in the diversity of activity following the intervention was found. overall, there was a statistically significant increase in the number of positive staff interventions but no change in the number of negative staff interventions. there was a significant reduction in levels of depression (brooker et al., ). in summary, there is a limited evidence base for the effectiveness of pcc. the number of studies is small, but the findings are encouraging, provided that the feasibility and resource requirements of the treatment approaches agree with the reality in clinical practice. table effect of studies based on kitwood’s care philosophy on neuropsychiatric symptoms in dementia study design sample intervention outcome result fossey et al., months cluster rct ( arms) + specialist nursing-homes patients analysed -pcc staff training control: usual care -use of neuroleptics -agitation (cmai) -quality of life (dcm) -significantly lower use of neuroleptics in the intervention groups compared to the control group brooker et al., months repeated measures within- patients design specialist nursing homes patients with a diagnosis of dementia or enduring mental health problems staff training in pcc activity program and cooperation with specialist expertise -quality of life (dcm, d-qol) -depression and anxiety (csdd) -statistically significant increase in the number of positive staff interventions -no change in the number of negative staff interventions overall. -significant reduction in depression chenoweth et al., months cluster rct ( arms) + + task- focused care facilities patients with persistent need-driven behaviour completed the study -pcc staff training -dcm control: usual care -agitation (cmai) -neuro- psychiatric symptoms (npi) -quality of life (qualid) -use of restraints -use of psychotropic drugs -reduced agitation compared to usual care -no other significant results van de ven et al., months cluster rct ( arms) + care homes persons with dementia were analysed -dcm control: usual care -agitation (cmai) - neuro- psychiatric symptoms (npi-nhi) -quality of life (qualidem) -no effect on agitation or compared to usual care, -more neuropsychiatric symptoms in the intervention group than in the usual care group -no significant effect on patients’ quality of life rct: randomized controlled trial, d-qol: dementia quality of life instrument, npi-nhi: neuropsychiatric inventory–nursing-home version, cmai: cohen-mansfield agitation inventory, qualid: quality of life in late- stage dementia, dcm: dementia care mapping, csdd: cornell scale for depression in dementia, qualidem: quality of life in dementia instrument . implementation in health-care settings implementing pcc by use of a structured method implies implementing changes to the way that care staff work, which has proved to be a great challenge. the effectiveness of an innovation depends on the effectiveness of its implementation, and a multitude of factors influence the degree of success of an implementation. innovation in service delivery and organizations has been defined as: “a novel set of behaviours, routines, administrative efficiency, cost effectiveness, or users’ experiences that are implemented by planned and coordinated actions” (greenhalgh, robert, macfarlane, bate, & kyriakidou, ).the next chapter describes the different aspects of implementation and their many interactions. implementation has been defined as the process of putting to use or integrating an evidence based intervention within a setting (rabin, brownson, haire-joshu, kreuter, & weaver, ). implementation is considered to be complex in health-care settings because it is delivered through the actions of individuals as well as organizations. implementation is a social process, which means that the context will impact on the process, and there may be barriers at the patient level, the provider team or group level, the organizational level or the market/policy level (fixsen & blase, ; ferlie & shortell; , grol, bosch, hulscher, eccles, & wensing, ,). a multitude of implementation models exist, which have relatively comprehensive lists of factors that may affect implementation (damschroder et al., ; feldstein & glasgow, ; greenhalgh et al., ). some implementation models describe how organizational factors can promote a positive context for implementation, but there is limited evidence regarding which variables are key factors. the conceptual model of greenhalgh et al. ( ) is described by the authors as: “a memory aide for considering the different aspects of a complex situation and their many interactions” (greenhalgh et al., ). the model of does not specify the interactions between the constructs that are believed to influence implementation. thus, the specific mechanisms of change and interaction remain to be developed and tested empirically (greenhalgh et al., ). the consolidated framework for implementation research (cfir) proposed by damschroder and colleges (damschroder et al., ) built on the extensive literature review conducted by greenhalgh and colleges ( ), which considered how innovations in health service delivery can be spread and sustained. damschroder and colleges ( ) included more recent published models, theories and frameworks that facilitate the translation of research findings into practice. the cfir comprises five major domains (damschroder et al., ): i. the intervention ii. inner setting iii. outer setting iv. the individuals involved v. the process followed to accomplish the implementation these domains overlap partially with the basic structure of other implementation models in health care, particularly the promoting action on research implementation in health services (parihs) framework, which is based on evidence, context and facilitation (kitson, harvey, & mccormack, ; rycroft-malone et al., ). the cfir domains i-v with constructs and short definitions of the topics (damschroder et al., ) (additional file ) are presented in the attachment. . complex interventions in research, the implementations of innovations in the health-care sector are considered to be complex interventions. according to the revised medical research council guidelines (craig et al., ) a complex intervention has the following characteristics. numerous interacting components within the experimental and control interventions the number and the difficulty of the behaviours required by those delivering or receiving the intervention numerous groups or organizational levels are targeted by the intervention. the number and variability of the outcomes the degree of flexibility or tailoring permitted by the intervention the medical research council guidance for the evaluation of complex interventions (campbell et al., ; craig et al., ) describes the sequential phases of developing rcts for complex interventions, although the phases required to develop and evaluate a complex intervention do not always follow a linear sequence. the phases are as follows. reviewing the theoretical base explore relevant theory to ensure the selection of the best choice of intervention and to develop a hypothesis that predicts the major confounders and strategic design issues. the components of the intervention must be defined after exploring relevant theory. modelling the intervention identify the components of the intervention and the underlying mechanisms that influence the outcomes. this enables the identification of evidence to predict how the components are related and how they interact. preliminary work is often essential to establish the likely active components of the intervention so that they can be delivered effectively during the trial. piloting and feasibility a pilot provides information on the feasibility of the intervention, as well as showing whether it can be implemented in a research setting and whether it is likely to be widely implementable should the results be favourable. however, a lack of effect may reflect implementation failure rather than genuine ineffectiveness, and a process evaluation is required to identify implementation problems. qualitative methods are recommended for assessing acceptability and feasibility. exploratory trial describe the constant and variable components of a reproducible intervention and prepare a feasible protocol for comparing the intervention with an appropriate alternative. definitive rct compare a fully defined intervention with an appropriate alternative using a protocol, which must be theoretically defensible, reproducible and adequately controlled in a study with appropriate statistical power. a detailed description is necessary so that the intervention can be implemented correctly and replicated by others. long-term implementation determine whether others can replicate your intervention reliably and in uncontrolled settings over the long term. qualitative methods are recommended for assessing the acceptability and feasibility of complex interventions (campbell et al., ; craig et al., ). the validity standards used in qualitative research incorporate rigor and subjectivity, as well as creativity, in the scientific process (whittemore, chase, & mandle, ). lincoln and guba translated the scientific criteria for quantitative research into the following criteria, which can be applied specifically to qualitative research (rolfe, ; lincoln & guba, ): a. credibility (in preference to internal validity) b. transferability (in preference to external validity/generalizability) c. dependability (in preference to reliability) d. confirmability (in preference to objectivity) the present study pcc is acknowledged to be one of the most promising approaches to the care of people with dementia, but few models of pcc implementation were available in norway when the present study started in . the studies of fossey and colleges (fossey et al., ) in the uk and chenoweth and colleges in australia (chenoweth et al., ) documented effectiveness of dcm and pcc, but the programmes used in these two pcc interventions were not published as models with manuals and training materials that allowed the interventions to be implemented elsewhere. the vips framework was used as described by brooker (brooker, ) in two norwegian nursing homes in to evaluate the care and detect what needed to be improved for the care to be person-centred. the feedback from the staffs of the nursing homes was that this procedure did not give incentives to changes at the unit level because the evaluation was too general. to implement pcc in a manner that affected care directly, there seemed to be a need to develop a model for the use of the vips framework by the front-line staff in their daily work at the unit level. the experiences of this preliminary pilot study were of importance for the present thesis. . aim of the thesis the overarching aim of this thesis was to translate the values of pcc into practical daily care using the vips framework and to evaluate its effect on the neuropsychiatric symptoms of people with dementia in nursing homes. in particular, we aimed: to examine whether a model developed for practical use of the vips framework could be implemented in a norwegian nursing home setting to investigate the effects of this model on neuropsychiatric symptoms to identify any organizational factors associated with the effects of the model . design to achieve these aims, we conducted four sub studies, which were published in four papers. sub study was a non-systematic review of the theoretical foundation of the vpm. sub study was a nine-week pilot study with subsequent focus groups, which were analysed by use of qualitative content analysis to evaluate the feasibility of the vpm. sub study was a -month rct with baseline assessments in january and follow-up assessments in november , which evaluated the effect of the vpm (and dcm) on neuropsychiatric symptoms. sub study was based on a multilevel regression analysis, which explored the variance in effect of the vpm based on the rct. table content, methods and participants in the four sub studies content paper theoretical foundation of the vpm paper development of the vpm paper effectiveness of the vpm paper factors that influenced the effect of the vpm methods review of the literature to assess the main elements of the vpm pilot study for the vpm focus groups qualitative content analysis rct with three arms sub study of the rct multilevel analysis of the vpm intervention group participants two nursing homes rns, ans nursing homes patients four nursing homes patients duration nine-week pilot study months . methods like most intervention studies in the health-care sector, the present study was a complex intervention. the development phases of a complex intervention do not always follow a linear sequence (craig et al., ). . . what is person-centred care in dementia? clinical reviews into practice: the development of the vips practice model. review of the theoretical base to ensure the selection of the best choice of intervention components in a model for the use of the vips framework by front-line staff, relevant theory was explored during the preparation of the study protocol. the challenge of building a shared base of person-centred values in the staff was addressed in the development of the vpm because this is central in pcc, as expressed in the v-indicators in the vips- framework. as previous research has shown that organizational and cultural factors may prevent staff from applying knowledge from training consistently in practice (lintern, ; burgio et al., ), literature on organization theory and social learning theory was used to guide the choice of intervention components for the vpm that could fit with existing resources and routines in the nursing home setting. to model the intervention, preliminary discussions were held with registered nurses (rns), auxiliary nurses (ans) and nursing management representatives to obtain their views on a draft of the vpm components to establish the likely active components of the intervention (campbell et al., ). these discussions were not analysed but were used as an aid to develop the vpm to the point where it could reasonably be expected to have a worthwhile feasibility, acceptability and effect. paper is a non-systematic review of the theoretical foundation for the components in the vpm which was conducted after the vpm had been tried out in a pilot study (paper ) to test its feasibility, adjust and finally define its components. paper may be seen as a supplement to paper , with a more in-depth description of the components of the vpm. . . a model for using the vips framework for person-centred care for persons with dementia in nursing homes: a qualitative evaluative study to examine the feasibility, acceptability and implementation fidelity of the vpm, a nine-week pilot study was conducted in two nursing homes from april to june . focus groups were used to evaluate the vpm pilot study. participants nursing home a had staff and patients, nursing home b had staff and patients. all of the patients had dementia. nursing home a had wards split into two smaller units with a nursing pool that comprised three rns who served the whole institution. ans were administrative managers in five of these units, and rns were managers in two of the units. nursing home b had a traditional form of organization with rns as managers in all six wards. data collection we conducted separate focus groups for rns and an in each nursing home. all of the rns and ans holding roles in the vpm during the pilot study were asked to take part in the focus group interviews, which also included the leading rn from each unit. seven rns and five ans took part from nursing home a, and four rns and seven ans from nursing home b. the rns and ans were aged between and years in both institutions. all except one of the ans were women. an interview guide was used in the focus groups, where the themes included the following. their general opinion of the vpm how the vpm fitted with their form of organization experience of the roles and functions of the vpm what kind of support they needed their suggestions about changes they were also asked about their opinion of the components of the vpm in practice, the allocation of roles and their general feedback about the acceptability and feasibility of the vpm. the focus groups lasted – minutes. . . the vips practice model (vpm) the final vpm is based on kitwood’s person-centred care, brooker’s vips- framework and the results of sub studies and . the foundation of the vpm the vpm was based on regular structured team-work, supervision and supportive management, which are elements highlighted by kitwood and the vips framework (brooker, ; kitwood, a). pcc is characterized by the relationship between each nurse and each patient with dementia, as well as the psychosocial environment in the ward, so the vpm focused on the process between the staff in the ward and the building of a shared base of values and knowledge in the staff (mccormack, ). the aim of this process was to create a shared person-centred view of the situation in the staff by allowing them to take part in decisions on how to proceed to provide person-centred care. the consensus meeting the hub of the vpm was a consensus meeting, which was held each week in the units. the consensus meeting used the vips framework to analyse challenging interactions between patients and nurses. the analysis focused on how the patient might experience the situation and how their neurological impairment, physical health, personality, life history and psychosocial needs might affect their reactions. each consensus meeting adhered to the following procedure (see textbox ). textbox the consensus meeting in the vpm . presentation of a situation from the perspective of the person with dementia by the primary nurse. . the vips framework was used to analyse an actual situation during the daily care for one person with dementia by assessing it in the context of all four vips elements. one or two indicators were selected and used as the focus of the subsequent discussion. . a discussion was held to share relevant knowledge about the person with dementia, including their current care and relevant experience and knowledge about psychosocial interventions. . decisions were made about any new interventions that might improve the quality of care for the patient. . the interventions selected were scrutinized from the perspective of the person with dementia by the primary nurse. . a date was set for an evaluation of the intervention. . documentation was undertaken by the primary nurse. roles and functions the front-line staff had roles and functions in the vpm, as well as leadership. the resource person was the leader of the consensus meetings. this role was held by an an, who is a representative of the most numerous group of nurses in norwegian nursing homes. the function of the leading rn in the unit was to schedule, attend and support the consensus meetings. their job description states that they must ensure the quality of care and give professional support during decisions and the evaluation of interventions. the primary nurse had a role as the spokesperson for the person with dementia. the primary nurse knows the patient best and is the staff contact person for the patient’s family. most patients have ans as their primary nurse because ans form the majority. the function of the pcc expertise group in the overall institution was, on request, to support the staff by that held vpm roles in the units. this group comprised four experienced senior staff. to show active support, the senior-level management of the institution (the director) attended the introduction to the staff, ensured that the necessary resources were in place and that time was set aside for consensus meetings and supervision. training all of the staff in the participating units was given a brief introduction ( hours) to the principles of pcc and the vpm. those appointed by the director to hold roles in the vpm attended another three-hour session where role-play was used to learn their functions in the weekly consensus meeting in the vpm. the three rns in each nursing home who were selected to constitute a pcc expertise group received four one-hour supervision sessions from the research team during the pilot study. the purpose of these sessions was to discuss how to support the staff holding roles in the different units, as well as situations that appeared on the agenda in the consensus meetings in the units. the other staff holding roles attended the first session, which focused on their functions in the consensus meeting. the vpm manual each member of staff received a vpm manual with an introduction to the main principles of pcc, including practical knowledge and examples of psychosocial interventions related to the indicators in the vips framework. each indicator was accompanied by stories from everyday care situations with an emphasis on the perspective of the person with dementia. each story included suggested interventions with explanations of why they were appropriate in the actual situation. the manual included a description of the structure of the vpm consensus meeting. assessment tools for well-being, challenging behaviour, pain, etc. were explained and attached. . . the effect of person-centred dementia care to prevent agitation and other neuropsychiatric symptoms and enhance quality of life in nursing home patients: a -month randomized controlled trial the cluster randomized controlled trial (rct) was conducted in nursing homes in oslo, norway between january and december . all of the nursing homes located in the city of oslo were invited to participate in the study. the nursing homes that accepted the invitation were randomized into three groups. one group of nursing homes received an intervention with dcm, one group received an intervention with the vpm and the final group was a common control group for both intervention groups. before randomization, the nursing homes were divided into three blocks according to their size, which was defined as small ( – patients, six nursing homes), medium ( – patients, six nursing homes) or large ( – patients, three nursing homes). random the ran groups one nu particip fourtee were in assess the effic figure vpm n mization ndomizatio comprised ursing hom pants en nursing ncluded in t sments, ma cacy analy flow of m interven patients nursing hom ( units) patient to fol p ana on was con d patients me that belo homes wi the study. ainly becau ysis (figure f participa ntion s in mes ) ts ( %) lo llow up patients alysed nducted by from two s onged to th th a total o subseque use of mort e ). the de ants pat nus inc st dcm in p nurs ( y drawing lo small, two m he vpm gr of wards ently, ( tality, so a etails are d tients from sing homes cluded ntervention patients in ing homes units) patients ( to follw patients a ots, and ea medium an oup withdr s and ( %) were total of described i m s n s %) lost up analysed ach of the t nd one larg rew after ra patients w e lost in the patients n paper . control g patie nursing ( un pati to pat three inter ge nursing andomizat with demen e follow-up were inclu group ents in homes its) ents ( %) follow up tients anal rvention home. ion. tia p uded in ) lost ysed interventions dementia care mapping (dcm) the dcm intervention involved four to six hours of in-depth observations (mappings) of people with dementia, which comprised the standardized coding of the well-being and behaviour of patients in the dining area or the living room room (brooker & surr, ; brooker & surr, ) (see section . ). descriptions of interactions between staff and patients were also recorded. the observations were followed by a feedback session within one week, where the care staff was invited to reflect upon the findings and to plan future actions to improve care. the care staff and their leaders then implemented the action plans in the nursing home units without any further involvement by the researchers. after six months, the dcm observations and feedback were repeated. two care staff members from each ward attended a basic dcm course, which certified them to use dcm in their own nursing homes. the rest of the care staff received a three-hour introduction to pcc and dcm in the form of lectures from the researchers. the dcm observations were made by the researchers in collaboration with the internal dcm-certified staff. the vips practice model (vpm) the leading registered ward nurse, an an from each ward and a rn appointed as the vpm coach in each nursing home attended a three-day introduction course before implementing the vpm in each unit. the vpm coach replaced the vpm expertise group that was removed from the model as a result of the evaluation of the pilot study (see paper ). the directors of the nursing homes were also invited. the course, which was conducted by the researchers, focused on the main elements of the pcc and the structure of the vpm. a dvd illustrating the perspective of the person with dementia was used as a basis and starting point for discussions of pcc. a dvd showing the structure of the consensus meeting was shown before all of the participants tested their roles and functions during role-play. time was set aside for the participants from each nursing home to plan the introduction to the rest of the staff and to prepare a schedule for the consensus meetings in the units and the supervision sessions. after the introduction course the vpm coach conducted a three-hour introduction to pcc and the vpm for the rest of the staff in their nursing home. all staff also received the vpm manual (described in paragraph . . ). the vpm coaches were invited to meet each other at the office of the researchers to share their experiences. four such meetings were conducted with a mean attendance of two internal coaches. the vpm was implemented in the units as described in paragraph . . distinguishing features of the interventions the main difference between the two pcc methods was the use of external involvement to implement pcc. dcm employed observation of care and feedback to staff by external experts. in the vpm, the staff was given central roles and functions in a decision-making process, which facilitated the sharing of knowledge among peers, but no external experts were involved. control group all three groups received five dvds containing lectures about dementia ( minutes each). for the nursing homes in the control group these dvds constituted their intervention. data collection assessments were made at baseline before randomization and after months. the data were collected by (baseline) and (follow-up) research assistants. these assistants received a one-day training course in the use of the questionnaires in groups of five to persons, which were conducted by the researchers. most of those who collected the data had participated in similar studies previously and knew the instruments well. they collected data from the patient records and interviewed the patients’ primary nurse, who was either an rn or an an. the project leaders were available during the data collection period and could be consulted at any time. those who collected the data were not part of the research group and were not given information on the groups to which an individual patient belonged. assessment scales in the rct, the assessment scales were administered by research assistants who interviewed the nurse in the nursing home who knew the patient best. the brief agitation rating scale (bars) the primary end point was the change in the summed bars score. bars (finkel et al., ) is a short version of the cmai, which was developed to enable nurses in nursing homes to make a rapid assessment of the level of agitation. the original bars version comprised items: hitting, pacing or aimless wandering, screaming, making strange noises, grabbing, repetitive mannerisms, repetitive sentences or questions, complaining, pushing and restlessness. one item (screaming) differed from the original in the norwegian version (sommer & engedal, ; sommer, kirkevold, cvancarova, & engedal, ). therefore, bars used in this rct did not include this item. the frequencies of these symptoms were rated from (never) to (several times per hour) based on the reported frequency of agitated behaviour during the preceding two weeks. the summed score ranged from nine to , where a higher score indicated more agitation. secondary end points were changes in scores on scales measuring neuropsychiatric symptoms, depression and quality of life. the npi questionnaire (npi-q) the -item npi-q (kaufer et al., ) was used to assess neuropsychiatric symptoms. the npi-q is a proxy-based questionnaire and one of the most widely used scales. the original, the npi (cummings et al., ), contained items: delusions, hallucinations, agitation, depression, anxiety, apathy, irritability, euphoria, disinhibition and aberrant motor behaviour. later, two neurovegetative items were added; i.e., sleep and night-time behaviour disorders, and appetite and eating disorders (npi- version) (cummings et al., ; cummings, ). the -item version assesses the frequency ( – ) and severity ( – ) of the symptoms, and an item score is generated by multiplying the frequency and severity ( – ), and the summed score of the scale ranges from zero to . the npi-q is a version of the -item npi which does not include the frequency scale (kaufer et al., ). the symptoms were registered as present or not during the preceding week, and if present, the severity of the symptom ranged from to , thereby yielding an item score ranging from zero to and a summed score on a scale ranging from zero to . the npi contains symptoms as diverse as apathy and aggression, so adding them and using the total score of the npi as a measure of the burden of the symptoms for the patient is problematic. studies have divided the npi scale into sub syndromes based on factor analysis. we analysed the change in the summed npi-q score and the change in the subscales for agitation (agitation + irritability + disinhibition) and psychosis (delusions + hallucinations) based on a factor analysis of a large sample of norwegian nursing home patients (selbaek & engedal, ). the cornell scale for depression in dementia (csdd) csdd was used to assess depression (alexopoulos et al., ). the csdd comprises items with categories that include mood-related signs, behavioural disturbance, physical signs, cyclic functions and ideational disturbance (e.g., delusions). the csdd records the symptoms that have been present during the preceding two weeks. each item is rated on a three-point scale: (absent), (mild or intermittent) and (severe). the option “not applicable” can be used when scoring an item is inappropriate. the score range is zero to , where a higher score indicates more depressive symptoms. the qualid scale the qualid scale (weiner, ) was used to assess quality of life. qualid records the frequency of observable behaviours in the patients during the previous week (range to ): smiles, appears sad, cries, has a facial expression of discomfort, appears physically uncomfortable, makes statements or sounds that suggest discontent, is irritable, enjoys eating, enjoys touching, enjoys interacting, and appears emotionally calm and comfortable. a higher score indicates a poorer quality of life. clinical dementia rating (cdr) the cdr scale (hughes, ) was used to measure the degree of dementia. the cdr rates six domains of functioning: memory, orientation, judgement and problem solving, community affairs, home and hobbies, and personal care. each domain is rated on a five-point functioning scale, as follows: , no impairment; . , questionable impairment; , mild impairment; , moderate impairment; and , severe impairment (personal care is scored on a -point scale where a . rating is not available). using an algorithm, the severity of dementia is staged as none, possible, mild, moderate or severe dementia. adding the scores for each item generates the “sum of boxes”( – ), which is highly correlated to the cdr score (o’bryant, ). the physical self-maintenance scale (psms) psms (lawton & brody, ) was used to assess performance of the activities of daily living. this scale has six domains: toilet, feeding, dressing, grooming, physical ambulation and bathing. each domain has five levels, ranging from total independence ( ) to total dependence ( ). a higher score indicates greater impairment ( – ). a modified version of the general medical health rating scale (lyketsos et al., ) was used to assess general physical health. this scale was used to categorize the patient’s physical health as good, fairly good, poor or very poor. patient characteristics patient characteristics such as age and gender were obtained from the patient records. ward characteristics information on ward characteristics was obtained by interviewing the registered nurse in charge using a questionnaire, which determined the type of ward unit, the number of patients per ward and the patient–staff ratio on day shifts. figure study design month months - month b as el in e da ta c ol le ct io n be fo re r an do m iz at io n vpm intro- duction course and dvd control goup dvd dcm intro- duction course and dvd month dcm mapping vpm intervention fo llo w -u p d at a co lle ct io n dcm mapping . . factors associated with effect of the vips practice model on neuropsychiatric symptoms in persons with dementia in nursing homes sub study used the vpm intervention group sub set of the data from the rct. participants five nursing homes (two small sized, two medium sized and onelarge sized) were allocated to the vpm intervention. one nursing home consisting of threewards and patients withdrew and did not receive the intervention. four nursing homes with wards (range – patients) and patients received the intervention. fifty- one ( %) of the patients were lost to follow-up, ( %) patients with dementia were analysed (see figure ). outcomes and explanatory variables the outcome variables were the change in scores on the npi-q and the csdd. explanatory variables were the clinical dementia rating scale (cdr), the physical self-maintenance scale (psms), the general medical health rating scale, patients' characteristics and ward characteristics. . analyses . . a model for using the vips framework for person-centred care for persons with dementia in nursing homes: a qualitative evaluative study information from the the focus groups were analysed using qualitative content analysis (graneheim & lundman, ) which has predominantly a naturalistic paradigm in interpretation, focuses on subject and context and deals with manifest as well as latent content in a text. the goal of this approach is ‘to validate or extend conceptually a theoretical framework or theory’ (hsieh & shannon, ). as the vips practice model is constructed on the care philosophy of kitwood (kitwood, a) and prior research, the directed content analysis approach was chosen. this approach starts with a theory or relevant research findings as guidance for initial codes. the tapes with the recorded focus group interviews were listened to and the transcriptions read several times to get an overall impression. the interaction and progression of the debate in the groups were noted, as it reflects the development of a group perspective or position among a particular set of people (reed & roskell payton ). the analysis began by coding statements on how the nurses experienced the vips practice model into the pre-set categories which were the elements highlighted by kitwood ( a) and the vips framework: structured team work, supervision and supportive management (kitwood, a; brooker, ). next, thematic units relating to the same central meaning were identified, condensed and classified into themes and subthemes. finally, the themes and sub-themes were validated by assuring that the descriptions were faithful to the original content of the focus-group texts. . . the effect of person-centred dementia care to prevent agitation and other neuropsychiatric symptoms and enhance quality of life in nursing home patients: a -month randomized controlled trial for the rct, the analyses were performed by an external statistician who had no knowledge of the interventions according to an analysis plan, before the randomization code was known. the patient and ward characteristics were subjected to descriptive analyses. the differences between the intervention and control groups were assessed using anova for continuous variables and a test for categorical variables. the differences between baseline and follow-up within each group were assessed using a one-sample t-test for continuous outcomes and mcnemar’s test for dichotomous outcomes. the change in the primary and secondary endpoints was defined as the difference between the follow-up and baseline scores. most of the scores were skewed at follow-up. however, all of the differences were close to being symmetrically distributed, which is a desirable property when using parametric methods. for the dichotomous outcome, use of psychotropic drugs, the changes for those using and not using psychotropic drugs at baseline was examined separately. the continuous endpoints in the intervention and control groups were compared using an independent-samples t-test, z-test for proportions was used for dichotomous outcomes. the intra-class correlation coefficient (icc) was calculated to assess the degree of clustering within a nursing home ward; i.e., the average correlation between patients from the same unit was compared with the average correlation between patients from different units (hox, ). there was a clustering effect in the data, so the association between the change in the endpoints and the type of intervention was assessed using regression models for hierarchical data. these models consider the possible correlations between members of the same cluster (nursing home ward), and they may avoid false significant findings. for each continuous outcome, a linear mixed model (sas mixed procedure) with random effects for the intercepts was estimated. a logistic regression model for hierarchical data (the sas glimmix procedure) with random effects for intercepts was fitted to detect change in the dichotomous secondary outcome. this was done separately for those not using psychotropic drugs at baseline and for those using it. the associations were also controlled for age, gender, the cdr sum of boxes, general physical health, numbers of patients in a ward, type of ward and staff–patient ratio at baseline. the statistical analyses were conducted using sas version . and spss version . . differences were considered significant when p < . . . . factors associated with effect of the vips practice model on neuropsychiatric symptoms in persons with dementia in nursing homes in sub study , we analysed the subset of the data from the rct that focused on the patients, units and nursing homes allocated to the vpm intervention group using multilevel analysis. multilevel analysis is used because contextual variables in a hierarchy, such as a unit in a nursing home, introduce dependency into the data, which violates the basic assumption of independence of observations in standard statistical tests (field, ). a multilevel linear regression model was used where the change in score on the npi- q and the csdd from baseline to -month follow-up were the dependent variables. the data were treated in a hierarchical manner, with the patients’ data on level and the unit data on level , because the patients constituted the first level in a hierarchy of data where the units could be viewed as the second-level variable and the nursing home as the third-level contextual variable. the analysis had three stages. first, the icc was calculated without any predictor variable in the model (the “null” model). in the second stage, each of the possible variables was tested. finally, to test for the effect of the institution level, we repeated the null-model test with the institution as level (cluster) and the patient as level . to analyse the effects explained by the unit as a contextual variable, a hierarchical multilevel linear regression model was built using the software package mlwin . (bristol, uk). first, the icc was calculated as described above. to find the model that best explained the variance at the unit level and the patient level, a univariate linear regression was performed for each of the explanatory variables with npi-q and csdd as dependent variables. the results were used to construct a multivariate linear regression model with the patient level and the unit level, as described by hox (hox, ). the model was built in a stepwise manner by adding the variables that explained most of the variance in the univariate analysis first. variables that did not explain any of the variance were not included in the model. table outcomes and explanatory variables in sub studies and sub study rct sub study vpm multilevel analysis primary outcome(s) the brief agitation rating scale (bars) the neuropsychiatric inventory questionnaire (npi-q) the cornell scale for depression in dementia (csdd) secondary outcome(s) the neuropsychiatric inventory questionnaire (npi-q) the cornell scale for depression in dementia, (csdd) the quality of life in late stage dementia scale (qualid) explanatory variables the clinical dementia rating scale (cdr) the physical self-maintenance scale (psms) the general medical health rating scale patient characteristics diagnoses of dementia ward characteristics the clinical dementia rating scale (cdr) the physical self-maintenance scale (psms) the general medical health rating scale patient characteristics ward characteristics . ethical considerations the world medical association ( ) developed the declaration of helsinki as a statement of ethical principles to provide guidance in medical research involving human subjects. the participants must be volunteers and informed participants in the research project. for participants who are not competent to give informed consent, consent must obtain from the authorized representative. researchers have a responsibility to ensure that the physical, social and psychological well-being of research the participant is not adversely affected by the research. researchers should seek to minimise disturbance to those participating in the research, anticipate and guard against consequences for research which can be predicted to be harmful and try to anticipate the long-term effects on individuals or groups as a result of the research. researchers should take special care where research participants are particularly vulnerable by virtue of age, social status and powerlessness. no patients were directly involved in the pilot study (sub study ). we could not see that any of the patients would be affected in any negative way by the vips practice model, rather the opposite. the nurses were given written information about the pilot study and asked for their consent to participate and for the use of the tape recorder in the focus groups. a clear statement of the purpose of the focus group was provided, to allow them to make an informed decision about participation. the topics discussed were of a practical nature and not particularly sensitive as they concerned their opinion of the vpm and how it fitted with the form of organization of their work- place. even so, confidentiality was observed, minimal information was revealed that could be used to identify the participants. the study was approved by the regional ethical committee of south-east norway. all patients at all stages of dementia in the participating wards were invited to take part in the rct (sub study ). people with dementia in norwegian nursing homes often lack the capacity to give informed consent, so thorough ethical deliberations are required before conducting research involving these patients. the possibility of using a person with dementia as an informant must be considered before making the decision to use proxy informants. of the patients who participated in this study, those who were competent gave informed written consent. the relatives of patients who lacked the capacity to give informed consent were given the opportunity to decline participation on behalf of the patients based on written information. persons with dementia are dependent and thus constitute a vulnerable group, great care must be taken not to violate their integrity. the data collected in this study were aggregated and analysed at the unit level, and they cannot be traced back to the individual patients. as proxy informants were used, the patients were not directly involved in the data collection. if any patients were affected by the implementation of the pcc intervention, it is considered to be to their benefit. the information gathered plays an important role in the development of good quality care for persons with dementia. the trial was registered at clinicaltrial.gov in january (study id number: nct ) and approved by the regional ethics committee for medical research in eastern norway. results - abstracts of the four papers . paper what is person-centred care in dementia? clinical reviews into practice: the development of the vips practice model. the vips framework is a four-part definition of person centred care for people with dementia (pcc), which arose out of an earlier review article for this journal. the definition has assisted in the practical application of person-centred care. it has been operationalized into the vips practice model (vpm), which has been patient to a recent randomized controlled trial within norwegian nursing homes. the vpm provided a vehicle for the vips framework to be utilized during reflective practice meetings focusing on understanding care situations from the perspective of patients with moderate to severe dementia. vpm incorporated an education and coaching approach, clearly defined staff roles, and patient-focused outcomes in a cycle to support improvements in quality of care. the use of vpm in practice is discussed. vpm was built utilizing the literature from organizational change. the role of literature reviews in bringing about change in practice is highlighted. . paper a model for using the vips framework for person-centred care for persons with dementia in nursing homes: a qualitative evaluative study. background: the ‘vips’ framework sums up the elements in kitwood’s philosophy of person-centred care (pcc) for persons with dementia as values, individualised approach, the perspective of the person living with dementia and social environment. there are six indicators for each element. aim: to conduct an initial evaluation of a model aimed at facilitating the application of the vips framework. design: qualitative evaluative study. methods: a model was trialled in a -week pilot study in two nursing homes and evaluated in four focus groups using qualitative content analysis. results: five themes emerged: ( ) legitimacy of the model was secured when central roles were held by nurses representing the majority of the staff; ( ) the model facilitated the staff’s use of their knowledge of pcc; ( ) support to the persons holding the internal facilitating roles in the model was needed; ( ) the authority of the leading registered nurse in the ward was crucial to support the legitimacy of the model and ( ) form of organisation seemed to be of importance in how the model was experienced. conclusion: the model worked best in wards organised with a leading registered nurse who could support an auxiliary nurse holding the facilitating function. . paper the effect of person-centred dementia care to prevent agitation and other neuropsychiatric symptoms and enhance quality of life in nursing home patients: a -month randomized controlled trial aims: we examined whether dementia care mapping (dcm) or the vips practice model (vpm) is more effective than education of the nursing home staff about dementia (control group) in reducing agitation and other neuropsychiatric symptoms as well as in enhancing the quality of life among nursing home patients. methods: a -month three-armed cluster-randomized controlled trial compared dcm and vpm with control. of nursing home patients with dementia, completed follow-up assessments. the primary outcome was the change on the brief agitation rating scale (bars). secondary outcomes were changes on the -item version of the neuropsychiatric inventory questionnaire (npi-q), the cornell scale for depression in dementia (csdd) and the quality of life in late-stage dementia (qualid) scale. results: changes in the bars score did not differ significantly between the dcm and the control group or between the vpm and the control group after months. positive differences were found for changes in the secondary outcomes: the npi-q sum score as well as the subscales npi-q agitation and npi-q psychosis were in favour of both interventions versus control, the qualid score was in favour of dcm versus control and the csdd score was in favour of vpm versus control. conclusions: this study failed to find a significant effect of both interventions on the primary outcome. positive effects on the secondary outcomes indicate that the methods merit further investigation . paper factors associated with effect of the vips practice model on neuropsychiatric symptoms in persons with dementia in nursing homes. background / aims: a recent cluster-randomised controlled study showed that the vips practice model (vpm) for person-centred care had a significant effect on neuropsychiatric symptoms in nursing-home patients with dementia. the rct indicated that a substantial proportion of the total variance of the effects was related to conditions in the particular unit (ward). we have explored which factors explain the variance in the effect of the vpm. methods: the vpm sub-set of data from the rct was explored using multilevel linear regression. the dependent variables were the change in scores on the neuropsychiatric inventory questionnaire (npi-q) and the cornell scale for depression in dementia (csdd). results: the unit in which the patient was living explained twenty-two per cent of the vpm's total variance in effect on the npi-q and thirteen per cent for the csdd. the intra class coefficient (icc) for the unit level was explained mainly by unit size on both scales and was considerably higher than for the institutional level. conclusion: the unit is the most influential level when implementing pcc by use of the vpm. the unit size explains most of the variance of effect of the vpm, and the effects were best in the small units. . discussion papers and will be discussed in the first part of the discussion, and papers and in the last part. . the vips practice model (vpm) the vpm will be discussed in light of the constructs in the consolidated framework for implementation research (cfir i-v) (damschroder et al., ) (additional file ) which is presented in the attachment. . . evaluation the findings of the focus group interviews after the pilot study indicated that the vpm was feasible in a nursing home setting, after some revision. the revision comprised to replace the vpm expertise group with an internal vpm coach, and to expand the training for those holding vpm roles (paper ). the pcc concept is often perceived as synonymous with good-quality care (brooker, ), and person-centeredness has an emotional appeal to many nurses, because it “has the right feel’ for them and nurses believe it ‘feels right’” (dewing, ). pcc accords with the humanistic nursing theory used in norwegian education for rns and ans. thus, because the vpm was based on pcc, it may have been perceived by staff as an intervention with a reliable evidence base (see cfir construct i: “evidence strength and quality”, damschroder et al., ; grol et al., ). clinical experience may also be perceived as evidence by staff (dopson, fitzgerald, ferlie, gabbay, & locock, ; rycroft-malone et al., ), and kitwood’s descriptions of care that undermines personhood (malignant social psychology, see section . ) are examples from a reality that unfortunately is often recognizable to staff. another finding from the focus group interviews was that the vpm facilitated the staff’s use of their knowledge of pcc. janzen et al. ( ) conducted a qualitative study of staff from five care facilities in canada and found that agitation was interpreted differently depending on the educational background of the staff members, as well as how they were trained to evaluate the situation and to recognize the needs (janzen et al., ). the cfir iv construct “knowledge and beliefs” includes skills, (damschroder et al., , additional file ) which are described as a cognitive function that relies on knowledge of the underlying principles of the intervention (rogers, ). even if pcc is intuitively appealing to most nurses, pcc may still be difficult to accomplish in practical care. kitwood perceived dementia as a complex interaction between the person’s personality, biography, physical health, neurological impairments due to the brain disorder, and the social psychology that permeates the environment the person lives in (kitwood ). this implies that nurses in dementia care need to have knowledge of types of dementia and neuropsychiatric symptoms, and the ability to recognize unmet needs. ervin et al. ( ) concluded that there are significant knowledge gaps in dementia care with respect to neuropsychiatric symptoms that are not recognized by staff. their study demonstrated that the perceived level of knowledge was higher than the actual level of knowledge and competence when measured (ervin, finlayson, & cross, ). beer et al ( ) found that nursing home staff perceived their current knowledge about dementia as “good”, but a need for education regarding assessment and care planning, challenging behaviour, inter-professional communication, communication with persons with dementia as well as communication with family carers was identified (beer et al., ). . . implementation components external expertise was not involved in implementation of the vpm in the units. after receiving training, the internal staff exerted their vpm roles and functions in the weekly vpm consensus meeting. in this respect, the number of steps required to implement the vpm can be regarded as low, although pcc itself might be regarded as complex because it involves behavioural change (cfir i construct “complexity”). simple and clear implementation schedules and task assignments have been shown to contribute to successful implementation (gustafson et al., ). a general finding in reviews of psychosocial interventions is that the feasibility of several interventions appeared to be limited because specialized staff was required to implement the intervention (ballard et al., ). one of the core elements of the vpm was regular structured team-work. groups are important arenas for sharing experiences and facilitating learning (dopson et al., ), and effective teamwork has also been highlighted as a core property for successful implementation (ferlie & shortell; ). an overview of dopson et al., ( ) of qualitative studies suggested that knowledge must be made social and assimilated into the shared knowledge of other individuals in order to contribute to organizational change (dopson et al., ). if the skills are not sufficient, the risk for rejection and discontinuance of the intervention is high (greenhalgh et al., ), which renders the implementation vulnerable to rejection and failure. in the case of the vpm, this highlights the importance of the leader’s presence in the consensus meetings, because middle managers, like leading ward rns, are the repositories of a significant body of knowledge and experience (carlstrom & ekman, ). the leader’s role as a supervisor in the vpm is important because their skills can be applied and shared during actual discussions. if the consensus meeting identifies gaps in knowledge and skills, the leader can take measures to remedy these deficits. as described in paper , the leader also represents the cultural norms that affect the staff and is in a position to influence organizational changes strongly (adorian, silverberg, tomer, & wamosher, ). for an intervention to be adopted and adhered to, the users must perceive an effectiveness advantage from implementing the intervention (cfir construct i “relative advantage”) (feldstein & glasgow, ; greenhalgh et al., ; gustafson et al., ). a subtheme of the focus group analysis described the conflicting opinions of the rns in the nursing pool in nursing home a. apparently, the vpm was not advantageous for these rns compared with their present way of working, whereas it was for the rest of the staff. this finding might be viewed in relation to the impact of the type of organization on the feasibility of the vpm (see cfir i, construct “adaptability”). in the type of organization with a leading rn (formal leader or middle manager) in each unit, the authority of the leader was found to be crucial in upholding the legitimacy of the vpm. the leader provided support to the ans who held facilitating roles in the vpm. in the cfir v, those in these roles are referred to as “champions”. the literature is mixed on the influence of the role of champions on implementation. there is some evidence that front-line champions may move other members of staff to fully embrace the intervention because effective champions can build a broad base of support, while supervisors or manager champions can empower the front-line champions (dopson et al., ; grol et al., ; rogers, ). however, it was clear from the pilot study that a form of organization with leaders based in the units fitted best with the model. the pilot study showed that setting aside time for consensus meetings appeared to be a problem. none of the units conducted consensus meetings every week, and the median number of meetings was . per month. if the leading rn did not attend, the consensus meetings were often cancelled (paper ). this agrees with the cfir iii’s emphasis on “leadership engagement”, which highlights the commitment and involvement of leaders. repenning ( ) stated that an implementation is doomed to fail without full support from the leaders (repenning, ). if the employees perceive that implementation of the intervention is a key organizational priority that is promoted and supported, the implementation climate will be strong, and the staff will not regard the intervention as something that disturbs them in their daily work (klein, conn, & sorra, ). the importance of the role of the middle manager to overcome barriers of implementation was also emphasised in the literature reviewed in paper . . . methodological considerations the findings of a pilot study of such short duration (nine weeks) might not capture the aspects of an implementation that take longer to emerge, which are the results of building the experience and knowledge of a team over time. given that this is in the nature of a pilot study, it is not a methodological problem, but it should be considered when making inferences from the findings. as recommended for complex interventions, qualitative research was used to assess the acceptability and feasibility (campbell et al., ; craig et al., ). qualitative research is contextual and subjective, rather than generalizable and objective (whittemore, chase, & mandle, ), because all such interpretations are influenced by the interpreter’s history and tradition (gadamer, )(p ). to ensure credibility, a conscious effort must be made to establish confidence in the interpretation of the data. this can be achieved by asking the participants to confirm the findings. however, to reconvene the members of a focus group might be difficult, and even if possible, the group dynamics will not be the same (kidd & parshall, ). in our study, therefore, member checking was performed in real time when the focus group interview was conducted. the essence of the discussion was summed up and recounted to the participants to obtain their confirmation of the interpretation, before leaving one topic and starting on another (kidd & parshall, ). authenticity refers to reflection on (all) the meanings and experiences that are lived and perceived by participants, so conflicting perceptions and opinions must be reflected to secure authenticity (whittemore, chase, & mandle, ). in our study, authenticity could have been reinforced further by using individual interviews, in addition to the focus group interviews, because there is always a risk that some of the participants have views and opinions that they do not divulge. however, the focus groups displayed apparent polarization, so this was not a pressing concern. in addition, the topics discussed were of a practical nature and not particularly sensitive. however, exploring the causes of the observed interplay and the conflicts of opinion by using individual interviews might have provided useful information, so this approach is recommended for future research projects in this field. a key criterion for confirmability (see section . ) is the extent to which the researcher admits their own predispositions and is conscious that they are not an objective observer (abulad, ). the interpreter must be aware that all interpretations are influenced by their history and tradition. therefore, they must keep an open mind to allow the unexpected and unfamiliar, and seek to understand a phenomenon rather than to provide an explanation. it is also of great importance to acknowledge the context and situated location of interpretation. beyond this, there are no fixed or rigid guidelines for interpretation and analysis (gadamer, )(p ). the main supervisor of paper and a college took part in the preparation of the interview guide, the focus group interviews and the debriefing after the focus group interviews, and they were consulted about the analysis. this was important for challenging the preconceptions and unconscious assumptions made by the main investigator. confirmability may also be supported by consistency with the findings from other studies. the findings from our pilot study agree with the findings of implementation research in other health-care settings, as discussed above. however, inconsistency is not proof of a lack of confirmability. . the effect of the vips practice model on neuropsychiatric symptoms in persons with dementia in nursing homes . . effect on agitation we did not find a significant difference in the agitation measured using bars between the vpm group and the control group, which was our main outcome variable. however, we did find a significant difference in agitation measured using the npi-q agitation subscale. this was surprising because bars has a broader range of items (nine items) and a wider frequency scale ( – ) compared with the npi-q agitation subscale, which comprises three items; agitation, irritability and disinhibition (selbaek & engedal, ), and a frequency scale that ranges from to . one explanation might be that bars does not assess irritation and disinhibition, which are symptoms that might have been prevented or positively affected by the vpm intervention if the staff had discussed how to avoid situations that provoked the patient or created frustration. another explanation might be related to differences in the information captured by the two scales. sommer et al. ( ) found an almost significant outcome of treating patients with dementia with oxcarbazepine to prevent agitation and aggression when measured using bars, but no significant effect when the effect was measured with the npi agitation subscale (sommer et al., ). the finding might also be related to the different scopes of the two scales. the broader scale of bars may give an unintended modified rating compared with the narrower scale of the npi-q. if the proxy informant wants to signify a change in the patient by rating the behaviour one grade up or down compared with the baseline measurement, one step up on the bars frequency scale has a lesser effect on the bars scale than one step up on the npi-q agitation subscale. the two previous rcts of pcc used the cmai to measure agitation. fossey and colleges (fossey et al., ) failed to detect an effect on the levels of agitation measured using the cmai between the pcc intervention group and the control group. chenoweth and colleges (chenoweth et al., ) detected a significantly lower agitation with cmai in their study for patients in the pcc intervention group compared with the patients in the control group. although the results of these two studies using cmai were different, it might have been more appropriate to use the cmai in the present study to measure agitation as the primary outcome. the cmai assesses agitated or aggressive behaviours, so it might have been more sensitive to changes and could have resulted in higher total summed changes in the scores compared with bars. we selected bars because this instrument has been used widely in clinical trials, and it measures the clinically relevant dimensions of dementia (sommer et al., ). however, the significant effect on agitation (less symptoms in the vpm group versus the control group, adjusted regression coefficient; – . ) when measured using the npi-q agitation subscale indicates that this pcc approach can affect (reduce) agitation in the patients in nursing homes. this is encouraging because symptoms such as agitation and aggression, disinhibition, and irritability are known to be some of the most persistent symptoms in people with dementia (selbaek, engedal, benth, et al., ). furthermore, it is important that efforts should also be made to prevent these symptoms from occurring because they seem to be particularly persistent after they have become established (selbaek, engedal, benth, et al., ). . . effects on the total amount of neuropsychiatric symptoms the vpm and dcm had significant effects on the total amount of neuropsychiatric symptoms (reduction in symptoms) compared with the control group, according to the npi-q (adjusted regression coefficient for dcm: – . , for the vpm: – . ). the npi-q total score provides a measure of the average change in all neuropsychiatric symptoms measured in the patients of the unit. the fact that the vpm and dcm both affected this variable, despite their different approaches, might be because the focus of pcc is not the treatment of a specific neuropsychiatric symptom. instead, the aim of pcc is to support the personhood of a person with dementia by facilitating and nurturing positive and enriching relationships (brooker, ; kitwood, a), which may have prevented neuropsychiatric symptoms in general over time. . . effect on psychosis the vpm had significant beneficial effect on psychotic symptoms compared with the control group (adjusted regression coefficient: – . ). this npi-q subscale comprises the items “delusions” and “hallucinations” (selbaek & engedal, ), which are the most commonly encountered psychotic symptoms in patients with dementia; i.e., delusions are the more common of the two according to studies using the npi (cipriani, danti, vedovello, nuti, & lucetti, ; selbaek, engedal, & bergh, ; zuidema et al., ; zuidema, van der meer, pennings, & koopmans, ). this finding is difficult to explain. it might be attributable to changes in the staff’s perception of the behaviour of patients; i.e., the focus on psychological needs in pcc may have made staff interpret the delusions or misidentifications of their patients as expressions of, for instance, a need for attachment or identity rather than psychotic symptoms. this result might be viewed in relation to the finding of reduced agitation according to the npi-q. hallucinations and delusions have been found to be related to what has been termed “abusive behaviours” (leonard, tinetti, allore, & drickamer, ; volicer, frijters, & van der steen, ; volicer, van der steen, & frijters, ), which might suggest a relationship between psychotic symptoms and agitation. volicer et al. ( ) found that hallucinations increased significantly in a group of patients where agitation increased during the study period. the psychosis score was lower in patients who did not experience agitation compared with the patients who were agitated during the study (volicer et al., ). this positive correlation between psychotic symptoms and agitation might be due to a mismatch between a patient’s environment and their abilities to cope with the situation. if the staff became more aware of overstimulation during the intervention and took care to shield a patient when they observed the patient’s level of agitation was escalating, this might have prevented the development and occurrence of psychotic symptoms in patients. thus, the effects of pcc might be primarily on psychosis and secondarily on agitation, or the reverse. the present study did not answer this question, but it would be valuable to know the answer. given that the vpm intervention led to a change in the efforts of staff to engage the patients in activities that they found enjoyable (see the vips framework, paragraph . . ), the reduction in psychotic symptoms might have been related to a more stimulating environment, because hallucinations may be related to a lack of stimulation (engedal & haugen, )(p ). a previous study showed that organized activity significantly reduced the occurrence of delusions and hallucinations (chen et al., ). people with dementia might experience frightening delusions by misinterpreting their own reflection in a large window as an intruder or by believing that persons on television are present in the room (engedal & haugen, )(p ). if staff had made changes to the physical environment that prevented such misinterpretations during the intervention, this might have affected the prevalence of psychotic symptoms. there also seems to be a relationship between psychotic symptoms and anxiety (engedal & haugen, )(p ). by taking the fears of patients seriously and providing comfort, by nurturing relationships that provide attachment, security and reassurance, anxiety might be reduced which in turn may lead to reduction in psychotic symptoms. our possible explanations of these relationships are still open for discussion, and they should be tested in future research. at present, we lack evidence based on research to support the relationships between these elements of pcc and psychotic symptoms. . . effect on depression the rct detected a significant reduction in depression in the vpm intervention group compared with the control group measured using the csdd, which was not the case in the dcm intervention group (adjusted regression coefficient for the vpm group versus the control group: – . ). similarly, there was a significantly lower deterioration in the quality of life in the dcm group measured using the qualid scale compared with the control group (adjusted regression coefficient for the dcm group versus the control group: – . ), whereas the lower deterioration in the quality of life in the vpm group compared with the control group was not significant. this was surprising because previous research shows fairly consistently that these two variables are strongly correlated, thereby indicating that quality of life and depression are related phenomena. a norwegian study found that a diagnosis of major depression was the strongest factor related to poor quality of life for elderly institutionalized patients with dementia (barca et al., ). the association between depression and poor quality of life is as also reported in international studies (gonzalez-salvador et al., ; wetzels et al., b). this lack of parallel changes in quality of life measured by qualid and depression measured by csdd for the two methods might be attributable to the qualities and catchment areas of dcm and the vpm. in dcm, the mapping is conducted in common living areas such as the dining room. the feedback given to the staff in the dcm intervention focused on, for example, making meals more enjoyable for the patients, which might have made the staff more observant of items in qualid such as “enjoys eating”, “enjoys touching/being touched” and “enjoys interacting or being with others” because they are relevant to mealtime situations. scott et al. ( a, b) suggested that the quality of various aspects of long-term care may be affected by the extent to which nursing staff consider these aspects to be priority tasks (scott, mannion, marshall, & davies, ). the focus in the feedback from the external dcm experts may have made the staff consider making mealtimes an enjoyable social occasion as a priority task. in the vpm intervention, the primary nurses presented challenging situations from the patient’s perspective in the consensus meetings. this may have made the nurses more observant of mood symptoms such as anxiety, sadness or irritability in the patients, which are items on the csdd scale. this focus may have made the nursing staff consider care interventions related to mood symptoms and depression as priority tasks. challenging situations often arise in the contexts of morning care and toileting (sloane et al., ; volicer et al., ). depression is considered to be one of the most common factors associated with agitation in nursing home patients with dementia (volicer et al., ), and resistance to care is reported to be related to depression (volicer et al., ). according to volicer and colleges ( ), interventions that prevent the escalation of resistance to care may decrease depression and prevent agitation in nursing home patients with dementia (volicer et al., ). the effect of the vpm on depression was encouraging because depression is more prevalent in persons with dementia than persons without dementia, and the use of anti-depressants may have limited benefits (banerjee et al., ; barca et al., ; lindstrom et al., ; nelson & devanand, )(see paragraph . . ). studies have found that depressive symptoms are related to aggression (leonard et al., ; volicer et al., ; volicer et al., ). of three modifiable factors investigated by volicer et al. ( ) (depression, psychosis and pain), the presence of depression symptoms was the most important factor related to agitation in nursing home patients with dementia (volicer et al., ). the aetiology of agitation is unclear, but it is believed to include physical diseases (delirium), unmet needs and pain (cohen-mansfield et al., ; kovach et al., ). increased awareness of these factors—e.g., by the patient’s primary nurse during morning care—might partly explain the reduced depression in the vpm intervention group. observation of these factors was part of the primary nurse’s preparation for the presentation of the patient’s perspective and experience of the situation in the vpm consensus meeting (see paragraph . . ). according to volicer et al. ( ), depression is probably a factor involved in the initiation or maintenance of agitation (volicer et al., ). as with the effect on psychosis, the effect of pcc and the vpm on depression could have been mediated via an effect on agitation or vice versa, but the present study did not address this question. . . variation between the units the rct detected significant effects of the intervention in the vpm group as a whole compared to the control group. however, the sub study of the rct (paper ) showed that the effects differed substantially between the units in the same nursing home in the vpm intervention group. what may have contributed to this difference in effect between units? it might have been expected that the type of unit would have had an impact on the effect of the vpm. however, the only strengthened scu that took part in this study was associated with a lesser effect of the vpm compared with scus and ordinary units. if the strengthened scu were excluded, the type of unit would not have affected the result. the establishment of scus was recommended by the norwegian ministry of social affairs in a regulation issued in . the aim was to create a better environment for people with and without dementia, and to help people with dementia to function better. a norwegian study showed that the patients of scus were younger, were less functionally impaired, had better physical health, and exhibited clinically significant psychiatric and behavioural symptoms more often compared with the patients of ordinary units (selbaek, kirkevold, & engedal, ). according to another norwegian study, the average staffing ratio during a day shift was slightly higher in scus ( . patients per staff) than ordinary units ( . patients per staff), whereas the proportion of unskilled staff was higher in scus ( . %) than ordinary units ( . %) (kirkevold & engedal, ). given that the staff of the scus in the rct were specially selected, trained and supervised, the unit type is a variable that could be hypothesized to tip the scales in both ways. the rationale for a hypothesis of a greater reduction in neuropsychiatric symptoms in the scus than the ordinary units may be related to the vpm favouring good processes, thereby exploiting the potential of the special features of a scu. the rationale for a hypothesis with the opposite result may be related to an initially higher quality of care in scus than ordinary units, thereby indicating a ceiling effect of what could be achieved. we found only a minor difference in effect between the scus and the ordinary units, which agrees with the cochrane review by lai and colleges ( ). this review concluded that there is little evidence to support the assumption that the care of people with dementia in scus is superior to care in traditional nursing units based on the limited evidence base available. lai and colleges ( ) found that no rcts had compared the effect of scus with traditional nursing units with respect to the management of agitated behaviours in people with dementia. thus, the conclusion of the review was based on the results of non-rcts (lai et al., ). in another evidence-based review related to organizational characteristics, zimmermann and colleges ( ) found that the behaviour and engagement of patients did not differ based on residence in a scu (zimmerman et al., ). thus, the cochrane review of lai and colleges ( ) and the review of zimmermann and colleges ( ) both concluded that “implementing best practices may be more important than providing a specialized care environment”. in addition, it is questionable whether the intended features of scus represent the reality for most scus (gerdner & beck, ). . . effect of unit size our exploration of the variance in the effect of the vpm (paper ) showed that the unit level was considerably more influential than the institutional level when implementing the vpm. being aware of which organizational level (team, unit, service line, organization, system level, etc.) is the most influential for the implementation of a particular intervention is acknowledged as important in organization research. which level is the most influential depends on the scope and nature of the intervention. the implementation climate (cfir iii) at the influential level is held to be decisive for implementation. another term for this is “receptiveness for change”, which may vary among units (damschroder et al., , additional file ). the two concepts of culture and climate are often used without any clear distinction, but culture is often used as a concept for addressing deeper values and assumptions than climate (gershon, stone, bakken, & larson, ). despite its variation in use and definition, culture has been shown to have a significant influence on the effectiveness of implementations (helfrich et al., ). we lack data on the culture in the units investigated in the present study, but the number of staff and their proximity to the leader might have bearings on their culture. in the rct, a unit was defined as an administrative unit of the nursing home with its own leader. we found that small units with their own leaders were favourable for the effectiveness of the vpm. in a systematic review by wong and colleges ( ) of the relationships between nursing leadership and patient outcomes, there was a statistically significant association between patient satisfaction and a transactional leadership style, which decreased as the number of staff reporting to the manager increased (wong & cummings, ).the empirical knowledge about the association between nursing leadership and patient outcomes is limited (wong, cummings, & ducharme, ). a qualitative study by rokstad and colleges ( ) which investigated the role of leadership in the implementation of pcc in nursing homes using dcm, found that a leader who was an active role model and who expounded a clear vision was favourable for the implementation of pcc (rokstad, vatne, engedal, & selbaek, ). this may indicate that smaller units with its own dedicated leader benefit the implementation of the pcc. . . methodological considerations although there are potential gains in connection with participation in research projects such as the present rct, nursing homes might have declined to take part because of a strained resource situation. this represents a risk of selection bias. however, the nursing homes were randomized into three groups. the results show that the pcc interventions had significant favourable effects on nursing homes from this population, whereas the control condition did not. however, if we assume that a volunteer effect existed in the present project, this effect is not necessarily a problem. it is not recommended to implement a psychosocial intervention in an organization that is unreceptive or that may have difficulties in adhering to a research protocol without also implementing measures to support the necessary change. the data were collected by (baseline) and (follow-up) research assistants. most of these assistants had participated in similar studies previously and were familiar with the questionnaires, whereas others had not. however, all of the assistants participated in a one-day training course prior to the first data collection to ensure that they had a similar understanding of the questionnaires. still, there is always a risk of individual differences in how the assessors conducted the interviews, although the researchers were available and could be contacted by telephone if the research assistants had questions about the assessment. the nurses who served as proxy informants for each patient were not always the same at the baseline and at the follow-up assessment. thus, it is possible that different nurses might have had different standards when assessing the patients. this might have impaired the quality of the data. however, we used validated norwegian versions of the instruments with high inter-rater reliability. any potential differences or errors in the data collection would not have been systematic errors, so they have been distributed randomly among all nursing homes and all three groups. in addition, inconsistencies in the assessment would have prevented us from detecting significant differences in the results among the units, rather than producing unjustified significant findings. the use of staff as proxy informants is debated because proxy-based information relies upon another person’s knowledge of the person with dementia, their ability to understand the person and their knowledge of dementia symptoms. the obvious reason for not interviewing the patients themselves is the impaired memory and reasoning abilities of people with moderate and severe dementia (most of the participants were in one of these two groups), which makes it hard for them to respond appropriately to the rating options in questionnaires. proxy informants are used often in quantitative research, especially for people with moderate and severe dementia in nursing homes because interviewing the patients would lead to an even greater bias, as well as causing problematic ethical issues. the vpm intervention in our rct was conducted in clinical practice by internal staff, so the fidelity to the research protocol was exposed to challenges that could have affected the results. however, van de ven and colleges ( ) criticized the pcc study by chenoweth and colleges ( ) because it was a form of implementation that did not address the demand for evidence about real-world risks. the study by chenoweth and colleges ( ) was explanatory in character because the interventions were performed by the researchers, the settings were well-resourced and tightly controlled, which are rare conditions in clinical reality (van de ven et al., ). our study may be considered a pragmatic cluster rct where the staff of the nursing homes performed the intervention in a manner that may inform daily clinical practice. participation in a research project entails a hawthorne effect; i.e., an observer- expectancy effect, where the participants change the behaviour that is being assessed because they know that they are being studied, rather than because of the intervention (french, ). the data collection process might have made the staff more attentive to the issues raised in the assessment questionnaires. thus, controlling for this effect is necessary. in our study, the interventions were compared with a control group, which also received an intervention in the form of participation in the data collection and receiving a dvd containing lectures about dementia by renowned scientists in the field and. the hawthorne effect would have been present in all three groups, which was considered in the statistical analysis. conducting a randomized, controlled psychosocial intervention trial is a complex undertaking, and there will be a large number of confounding factors and practical challenges. however, the fact that psychosocial interventions are complex should not prevent research from being conducted because the result would be a lack of knowledge about psychosocial phenomena. however, other research designs might provide knowledge about various aspects of organizations and social systems, such as nursing homes, which are difficult to obtain using rcts, but the fact remains that an rct is considered the gold standard for providing “hard evidence”. . clinical implications and proposals for future research pcc has become an influential psychosocial approach since the publication of kitwood’s work in the s. evidence for its effect is emerging, and we believe that the present study contributes to the knowledge of the effectiveness of pcc. this development is encouraging because pharmacological treatments of neuropsychiatric symptoms in people with dementia have only modest effects and potential serious adverse effects, while there presently is little evidence for the effectiveness of psychosocial interventions in general because of methodological limitations. the present project demonstrates that the vpm developed for the practical use of the vips framework, which is a summary of the main elements of pcc, is feasible in a norwegian nursing home setting and that it might reduce neuropsychiatric symptoms in people with dementia. it is encouraging that the use of the vpm may reduce depression, which is highly prevalent and often both undetected and undertreated in this group of patients. small units with their own professional leaders appeared to be beneficial for the implementation of the vpm. further research should continue to focus on how staff can gain sufficient knowledge of neuropsychiatric symptoms and learn to be sensitive towards the perspective of the person with dementia, and incorporate these insights into communication and practical care. this is an essential precondition for pcc, and it may be one of the greatest challenges for the care staff. it is equally important to study the 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( ). nurses in distress? an explorative study into the relation between distress and individual neuropsychiatric symptoms of people with dementia in nursing homes. int j geriatr psychiatry. doi: . /gps. attachment the consolidated framework for implementation research (cfir) i. intervention characteristics a intervention source perception of key stakeholders about whether the intervention is externally or internally developed. b evidence strength & quality stakeholders’ perceptions of the quality and validity of evidence supporting the belief that the intervention will have desired outcomes. c relative advantage stakeholders’ perception of the advantage of implementing the intervention versus an alternative solution. d adaptability the degree to which an intervention can be adapted, tailored, refined, or reinvented to meet local needs. e trialability the ability to test the intervention on a small scale in the organization, and to be able to reverse course (undo implementation) if warranted. f complexity perceived difficulty of implementation, reflected by duration, scope, radicalness, disruptiveness, centrality, and intricacy and number of steps required to implement g design quality and packaging perceived excellence in how the intervention is bundled, presented, and assembled h cost costs of the intervention and costs associated with implementing that intervention including investment, supply, and opportunity costs. (damschroder et al., )(additional file ) the consolidated framework for implementation research (cfir) ii. outer setting a patient needs & resources the extent to which patient needs, as well as barriers and facilitators to meet those needs are accurately known and prioritized by the organization. b cosmopolitanism the degree to which an organization is networked with other external organizations. c peer pressure mimetic or competitive pressure to implement an intervention; typically because most or other key peer or competing organizations have already implemented or in a bid for a competitive edge. d external policy & incentives a broad construct that includes external strategies to spread interventions including policy and regulations (governmental or other central entity), external mandates, recommendations and guidelines, pay-for-performance, collaboratives, and public or benchmark reporting. (damschroder et al., )(additional file ) the consolidated framework for implementation research (cfir) iii. inner setting a structural characteristics the social architecture, age, maturity, and size of an organization. b networks & communications the nature and quality of webs of social networks and the nature and quality of formal and informal communications within an organization. c culture norms, values and basic assumptions of a given organization. d implementation climate the absorptive capacity for change, shared receptivity of involved individuals to an intervention and the extent to which use of that intervention will be rewarded, supported, and expected within their organization. . tension for change the degree to which stakeholders perceive the current situation as intolerable or needing change. . compatibility the degree of tangible fit between meaning and values attached to the intervention by involved individuals, how those align with individuals’ own norms, values, and perceived risks and needs, and how the intervention fits with existing workflows and systems. . relative priority individuals’ shared perception of the importance of the implementation within the organization. . organizational incentives & rewards extrinsic incentives such as goal-sharing awards, performance reviews, promotions, and raises in salary and less tangible incentives such as increased stature or respect. . goals and feedback the degree to which goals are clearly communicated, acted upon, and fed back to staff and alignment of that feedback with goals. . learning climate a climate in which: a. leaders express their own fallibility and need for team members’ assistance and input; b. team members feel that they are essential, valued, and knowledgeable partners in the change process; c. individuals feel psychologically safe to try new methods; and d) there is sufficient time and space for reflective thinking and evaluation. . readiness for implementation tangible and immediate indicators of organizational commitment to its decision to implement an intervention. . leadership engagement; commitment, involvement, and accountability of leaders and managers with the implementation. . available resources; the level of resources dedicated for implementation and on-going operations including money, training, education, physical space, and time. . access to knowledge and information; ease of access to digestible information and knowledge about the intervention and how to incorporate it into work tasks. (damschroder et al., )(additional file ) the consolidated framework for implementation research (cfir) iv. characteristics of individuals a knowledge & beliefs about the intervention individuals’ attitudes toward and value placed on the intervention as well as familiarity with facts, truths, and principles related to the intervention. b self-efficacy individual belief in their own capabilities to execute courses of action to achieve implementation goals. c individual stage of change characterization of the phase an individual is in, as he or she progresses toward skilled, enthusiastic, and sustained use of the intervention. d individual identification with organization a broad construct related to how individuals perceive the organization and their relationship and degree of commitment with that organization. e other personal attributes a broad construct to include other personal traits such as tolerance of ambiguity, intellectual ability, motivation, values, competence, capacity, and learning style. (damschroder et al., )(additional file ) the consolidated framework for implementation research (cfir) v. process a planning the degree to which a scheme or method of behavior and tasks for implementing an intervention are developed in advance and the quality of those schemes or methods. b engaging attracting and involving appropriate individuals in the implementation and use of the intervention through a combined strategy of social marketing, education, role modeling, training, and other similar activities. . opinion leaders individuals in an organization who have formal or informal influence on the attitudes and beliefs of their colleagues with respect to implementing the intervention . formally appointed internal implementation leaders individuals from within the organization who have been formally appointed with responsibility for implementing an intervention as coordinator, project manager, team leader, or other similar role. . champions individuals who dedicate themselves to supporting, marketing, and ‘driving through’ an implementation overcoming indifference or resistance that the intervention may provoke in an organization. . external change agents individuals who are affiliated with an outside entity who formally influence or facilitate intervention decisions in a desirable direction. c executing carrying out or accomplishing the implementation according to plan. d reflecting & evaluating quantitative and qualitative feedback about the progress and quality of implementation accompanied with regular personal and team debriefing about progress and experience. (damschroder et al., )(additional file ) reviews in clinical gerontology ; – first published online march c© cambridge university press doi: . /s what is person-centred care in dementia? clinical reviews into practice: the development of the vips practice model janne røsvik , dawn brooker , marit mjorud and Øyvind kirkevold centre for ageing and health, oslo university hospital, norway, university of worcester association for dementia studies, university of worcester, uk and norwegian centre for dementia research, university of agder, kristiansand, norway summary the vips framework is a four-part definition of person- centred care for people with dementia (pcc), which arose out of an earlier review article for this journal. the definition has assisted in the practical application of person-centred care. it has been operationalized into the vips practice model (vpm), which has been subject to a recent randomized controlled trial within norwegian nursing homes. the vpm provided a vehicle for the vips framework to be utilized during reflective practice meetings focusing on understanding care situations from the perspective of residents with moderate to severe dementia. vpm incorporated an education and coaching approach, clearly defined staff roles, and resident-focused outcomes in a cycle to support improvements in quality of care. the use of vpm in practice is discussed. vpm was built utilizing the literature from organizational change. the role of literature reviews in bringing about change in practice is highlighted. key words: person-centred care, dementia, vips frame- work, model, implementation. introduction historically, dementia has been portrayed as a slow living death, destroying a human being as a person and moral agent. although this perspective is no longer prevalent in modern clinical practice, it still influences the way in which people with dementia are related to, considered and conceptualized. tom kitwood was the first scholar to use the term ‘person-centred’ in relation address for correspondence: professor dawn brooker, association for dementia studies, st john’s campus, university of worcester, worcester wr aj, uk. email: d.brooker@worc.ac.uk to people living with dementia , with the aim of bringing together ideas and ways of working that emphasized communication and relationships, rather than medical and behavioural management. kitwood built on the work of carl rogers, one of the founders of the humanistic approach to psychology. rogers emphasized an empathic understanding of a person’s internal frame of reference and the endeavour to communicate this experience to the person. , the concept of personhood is at the core of person-centred care (pcc). personhood emerges in a social context: ‘personhood is not, at first, a property of the individual; rather, it is provided or guaranteed by the presence of others’ (kitwood and bredin, ; p. ). kitwood’s theoretical perspective stated that being cognitively impaired does not necessarily reduce personhood but rather it was not being recognized as a person that could cause severe ill-being, or even the state of vegetation. he predicted that this would erode the global psychological states that are fundamental for all human beings: self esteem, sense of agency, social confidence and hope. however, pcc is often used synonymously with individualized care, and the emphasis on relationships that kitwood promoted gets lost. indeed, the concept of relationship-centred care was developed as a counter to this emphasis on the individual. , , in an earlier review in this journal, a four-part composite definition of person-centred care in relationship to people with dementia was developed. this definition synthesized different threads emerging at that time in the literature and rhetoric of person-centred care whilst maintaining the sophistication of kitwood’s original ideas. using the acronym vips (commonly understood as very important persons) janne røsvik et al. person-centred care was defined as having four major elements: v a value base that asserts the absolute value of all human lives regardless of age or cognitive ability; i an individualized approach, recognizing uniqueness of the person living with dementia; p understanding the world from the perspective of the of the person living with dementia; s positive social psychology in which the person living with dementia can experience relative well-being. following the publication of the review, the vips definition was incorporated in the nice/scie guideline on dementia. professional dementia care is dependent on attributes of organizations as well as individual practitioners. the vips definition was subsequently utilized to provide an evidence-based structure for good practice in person-centred care in the dementia care field – particularly in relation to care home practice. given the complexity of defining person-centred care it was deemed helpful to delineate a set of concrete indicators that care providers could benchmark their services against. pilot indicators were reviewed by around care providers and service user organizations worldwide to arrive at a detailed description of what a person-centred care provider should have in place. this list of indicators grouped around the four elements of the definition set out above has become known as the vips framework. – it has been taken up by many english-speaking care providers and the concepts have been translated into german, japanese and norwegian, and with translation planned in portuguese and spanish. recently, the vips framework has been utilized as a structure for guiding interactions and communication with health care professionals and people living with dementia from early diagnosis to palliative care. the vips elements are used as the general guiding principles for health care practitioners to reflect on their interactions with people with dementia and their families. these reflective questions include: • does my behaviour and the manner in which i am communicating with this person show that i respect, value and honour them? • am i treating this person as a unique individual? • am i making a serious attempt to see my actions from the perspective of the person i am trying to help? how might my actions be interpreted by this person? • does my behaviour and interactions help this person to feel socially confident and that they are not alone? these guiding principles can be applied in all professional interactions with people with dementia. they can be applied when professionals or care workers are involved in delivering a clinical procedure such as giving an injection or changing a dressing; they can be applied in situations where the person with dementia is being helped to complete a self-care task such as using the bathroom; equally they can be applied in discussions about care management or in running psychosocial interventions such as a reminiscence group. it is not the task that is person-centred but the way in which that task is done that can make it person-centred or not. the vips indicators provide a checklist that care providers can use as a benchmark to assess the person-centredness of their service for people with dementia. there is still a gap in provision, however, for how to provide a way forwards for using the vips framework to implement changes in practice and to provide ideas and practical resources that can be used to meet different challenges. the care fit for vips website (www.carefitforvips.co.uk) provides an online free tool kit for both undertaking a benchmark, creating an action plan and in locating online resources that can assist with quality improvement plans. this is subject to an on-going evaluation in practice. the vips framework was operationalized into the vips practice model (vpm) for achieving person-centred care in norwegian nursing homes and home care. a recent randomized controlled trial (rct) showed positive results. the devel- opment of the vpm was built on evidence-based practice. it is presented below and its application in practice is reviewed. the vips practice model (vpm) it is contended that pcc is far more talked about than it is implemented. kitwood also pointed out that ‘the challenge is to get organizations to do it, rather than simply maintain a facade’ what is person-centred care in dementia? table . the vips practice model (vpm): the vehicle for change education and supporting materials a programme of education for those with specific roles within vpm and senior staff is the starting point for change. all staff receive a manual ( pages) with examples of pcc related to each indicator in the vips framework and assessment tools. the leaders and the internal coach also receive a manual explaining vpm staff roles and functions • an auxiliary nurse (an) leads the consensus meetings – a role known as the resource person (rp) • the leading ward registered nurse (rn) ensures quality by giving professional support • the primary nurse (pn) has the role as spokesperson for the person with dementia • an internal coach provides an introduction to vips to the rest of the staff and provides ongoing support to the an, rn and pn staff the vips consensus meeting the aim is to hold a weekly meeting of the ward/unit team lasting – min structured as follows: . presentation of the situation from the perspective of the person with dementia. a pn who is concerned about a situation asks the rp to put it on the agenda. if there are several cases put forward, the rp and the leading ward rn agrees when each situation will be put on the agenda . the vips framework is used to analyse one concrete situation in the daily care for one person with dementia. one to two indicators are chosen and focused on in the following discussion . discussion with sharing of relevant knowledge between the team members . decision on interventions: who will do what, with whom and by when . outcomes relating to the perspective of the person with dementia are agreed . date for review is set . record observations and interventions in the resident’s care plan minimum of four staff must be present including rp, leading ward rn and pn (kitwood ; , p. ). kitwood did not offer a comprehensive practice-friendly framework for translating his ideas into action. , for many professionals and staff, pcc continues to remain an elusive ideal. nursing staff have been shown to have a limited conception of pcc. despite the development of the vips framework in written and online forms, having a vehicle for how to put these into everyday institutional practice may still be required. also, in order to evaluate the utility of the framework through an rct it was necessary to develop a replicable protocol. this led to the development of the vips practice model in oslo, norway, in . it was trialled in a -week pilot study in two nursing homes and evaluated in four focus groups. adjustments were made following the pilot study and focus groups before it was tested within the rct mentioned above. basing care on pcc values is not simply about adopting a new terminology, it means to develop a culture of care that includes people with dementia in social relations and meaningful activity. culture has been defined as a link or transition between individual and collective behaviour. organizational culture can be perceived as something embodied in individuals but shared by the collective. , the development of the vpm (table ) addressed the problems of how to build a shared base of person-centred values in the staff, followed by and intertwined with the challenge of seeing a situation from the perspective of the person with dementia, and the further problem of applying knowledge of pcc acquired at training courses in concrete situations; in other words, how to facilitate the transition of pcc values and knowledge embodied in the individual nurse to collective behaviour of the staff. the vpm was designed to address these problems within existing resources and routines in the nursing home setting. in norway the traditional form of organization in nursing homes is wards of – residents with a registered nurse providing the administrative and professional lead for each ward. special care units (scu) for people with dementia have fewer residents ( – ). the staff– resident ratio on a day shift on a week day is normally around : for regular wards and . : for scus. in many nursing homes, some of the wards are divided into smaller units, for instance scus. the staff in the wards consists of approximately – % auxiliary nurses (an), – % registered nurses (rn) and – % unskilled janne røsvik et al. workers in addition to other types of health care professionals, with more rns in the scus than in ordinary wards. in the vpm the ans in the ward have central roles and functions. the vpm education programme practice can be defined as ‘a coherent set of human actions characterised by a commonly understood object, or good – i.e. telos; and by a socially structured and commonly accepted repertoire of means, whether instruments or skills (. . .) as well as commonly understood norms’ (wartofsky, ; p. ). previous research has shown that training courses alone are seldom enough to achieve and maintain changes in practice. repeated feedback and ongoing supervision are necessary to prevent staff from reverting back to previous styles of working. – it is often difficult for an entire care team to attend the same training course. those who attend the course face the challenge of conveying new ideas to the rest of the team as well as convincing them of the benefits of change. studies report concerns that organizational factors may limit the impact of educational programmes or prevent staff from applying ideas from training consistently in practice. , implementing ideas acquired at pcc training courses, such as individualized care planning or group activities, often impacts on the routines in the care facility. a routine is a stabilized, rule-governed pattern of acting, the skills of an organization. reflective thought is needed when institutionalized ingrained behaviours are at odds with changing circumstances; in other words, when the ways of working do not support the new desired values. to be able to see whether routines can be flexible in accommodating change, the routines themselves must be discussed. this can be done by making reflection on practice a part of an activity. the team can formulate hypotheses about important problems and their causes in a selected area which are tested, adjusted and then changes are embedded into the routines. to facilitate the continuous collective reflection that leads to learning and changes in practice, the vpm makes staff active participants in the decision-making process in the consensus meeting (see table ). this is in line with vygotsky’s sociocultural approach to learning, in which the students play an active role in learning, and collaboration is essential in order to facilitate meaning construction. the staff selected to hold key roles within vpm are selected by the management team and attend a two-day course. the director of the institution is also invited and recommended to participate. the course provides an introduction to the main concepts of pcc and the vpm and is regarded as the starting point of the process of implementing pcc. the perspective of the person with dementia is central throughout the training course. films and stories are used to illustrate how people with dementia may experience the world around them. role-plays based on situations from their own practice are utilized to train the participants in understanding the perspective of the resident. all participants try out the different roles in the vpm to be prepared to give support and feedback in the implementation in their work place. after the basic course the education and coaching is continued within the staff group undertaking change. in norway this would be the staff group in a ward. the staff group receives a three-hour introduction to pcc and the vpm. this is a ready made programme with lectures on dvd covering the main topics in the basic course, and films illustrating the perspective of the person with dementia and the consensus meeting. the films and dvds can also be used if a ward is having difficulties with the implementation of the vpm or as a part of the introduction to new staff. a vips manual with practical knowledge and examples of pcc and non-pharmacological treatment related to each indicator in the vips framework is available at the nurse’s station. it also contains assessment tools for wellbeing, behavioural and psychological symptoms of dementia (bpsd), pain, etc., with descriptions of when and how to use them. the staff can take the vips manual or the films and dvds home to look at them on their own. the senior staff also receive a consensus meeting manual, which elaborates on the different roles and how to supervise the staff. the vpm staff roles and functions the v-indicators in the vips framework describe that if the staff who deliver direct care feel valued for the work they undertake, they will in turn value those they care for on a day-to day basis. , an an undertakes the leadership of the what is person-centred care in dementia? consensus meeting, a role known as the resource person (rp). as ans constitute the majority in norwegian nursing homes, an an holding this function contributes to the legitimacy of the vpm in staff. the threshold to approach the rp is low for the front-line staff and, being an an, the rp knows what care situations currently concern them the most. based on input from the staff, the rp prepares the agenda together with the leading rn in the ward. the p-element in the vips framework is about treating the rights of the person with dementia as important as the rights of other people in the same situation. , in the consensus meeting the staff reflect on and discuss resident–staff interaction. the vpm has given each resident a spokesperson, the primary nurse (pn), to present their perspective and safeguard their rights when a situation concerning the resident is on the agenda. in a phenomenological-hermeneutic study nurses described difficulty in understanding and interpreting the world of the residents. to help the primary nurse prepare, the vips manual contains an example of how a situation can be presented from the resident’s point of view by the use of three questions: ( ) how do you think the person with dementia perceives what is happening to her/him? ( ) on what observations or knowledge of the resident do you base your assumption? ( ) what may cause the resident to react the way s/he does? describe her/his emotional state. the primary nurse must spend time with the resident and collect information from the family about the resident’s life history, important persons and key stories to answer these questions. the resident’s symptoms of and reactions to the neurological impairment and her/his general health must also be observed. the function of the leading ward rn is to undertake the responsibility for supporting, encouraging and thereby valuing the staff’s commitment to care and their engagement with the residents. the leading ward rn is the repository for a significant body of knowledge. middle managers, like a leading ward rn, represent attitudes, behaviour and expectations derived from personal factors such as experience, cultural norms and socialization. middle managers in health care are in a position to strongly influence organizational change. an rn with responsibility for the professional development in the wider institution has the role of an internal vips coach in the nursing home. the coach’s function is to give the three-hour introduction of the vpm to the whole staff group and to new staff. the coach also provides supervision and support to the rps and the leading ward rns in groups or individually when needed. the vpm consensus meeting according to organization theory, the organization is conceptualized as a dynamic balance between individual competence, the control that exists in formal structures, and teamwork. studies from other health care settings have shown the effectiveness of teamwork. regular team discussions and feedback have significantly improved detection, treatment and follow-up of patients with high blood pressure. furthermore, teams focusing on listening to all members, carers relatives and residents have been shown to improve risk assessment in mental health care. a supportive culture in teams is a powerful source that benefits change processes; the feeling of belonging to a community can have a favourable effect on readiness for change. studies have found that organizations that succeed in implementing and sustaining change possess cultures with two seemingly opposite characteristics: openness for change and structure. a regular forum for professional development, the consensus meeting, is the strategy to obtain these qualities in the vpm. it was recommended that the consensus meeting should be held weekly. it was seen as a continuation of the process of culture change that was initiated by the basic course. the structure ensures that all staff understand their roles; the agenda gives them opportunity to prepare. the main issue on the agenda, chosen from proposals from the staff, is an actual situation that is causing distress for the resident. a common example would be where a resident was agitated whilst being given help with personal hygiene during morning care. at the start of the consensus meeting the pn presents the situation from the resident’s point of view. the other staff supply their observations of the resident’s needs, habits or reactions. the situation is then assessed in relation to all four elements in the vips framework. a few minutes are spent to choose which of the indicators are the most janne røsvik et al. relevant to the situation or the best place to start in order to meet the needs of the resident. staff discuss their knowledge and arrive at a workable decision or changes to improve the quality of care. interventions might also be to use assessment tools to elucidate the underlying causes of behaviour. the interventions are assessed on behalf of the resident by the pn. the date for review of the interventions is set and the pn records the decisions in the resident’s record or care plan. resident-focused evaluation is seen as essential to decide if the interventions benefit the resident and for the staff to stay focused on the resident’s well- being. barriers in implementation of the vpm the vpm was designed to fit within existing resources and routines in the care unit and to be easy to implement. even so, barriers were encountered, particularly the frequency of the consensus meeting. none of the units that took part in the rct conducted weekly consensus meetings; the median number of meetings was . per month. the main reason conveyed was that the leading ward rn did not attend the consensus meetings but left it to the rp to handle it. it has been contended that the middle manager is the only one in the organization with the real potential to calm troubled employees, for instance when a process of change occurs. interventions decided upon in the consensus meeting often did not have legitimacy in the staff if the leading ward rn was not present to sanction and authorize them. neglect is a concept in organizational research signifying non- management. it may be a deliberate strategy to let competent staff solve problems by themselves, but it could also be a solution to an intolerable situation for a leadership who has too many and conflicting responsibilities and expectations. a study of the implementation of a new it documentation system in a health care setting found that a co-operative culture combined with a consensus-building leadership led to effective adoption of decisions. in norway, the absence of the leading ward rn in the consensus meetings may be explained by competing priorities from administrative tasks such as budget management. it may be necessary to discuss how the leading ward rn’s time is to be spent, and whether the main task is to be administrative assignments or professional engagement in the ward. another barrier in implementation of the vpm was high staff turnover, both among the leading ward rns and ans holding roles as rps. sometimes this meant that no staff in the ward had attended the basic vips course. the internal vips coach trained new staff using the films, dvds and the vips manual; still, it meant that the process in the ward was delayed. improving and sustaining change using vpm the future plan of development for the vpm is to make it a part of a system of methods working together as cogwheels running into each other (figure ). supervision from external experts can help staff through difficult periods; for instance, when facing the resident’s symptoms of and reactions to the dementing illness is perceived as demanding that it reduces the nurse’s confidence in her/his ability as a caregiver. , dementia care mapping (dcm) , or other on-going audits could be utilized as the component providing quality audit and feedback on effects of care routines. to strengthen the structural component, weekly programmes and daily schedules saying who will do what and when may be added to ensure that changes are implemented in daily practice. together these components are suggested as a means of providing more power to sustain change. conclusion the vips framework is a four-part definition of pcc used as the general guiding principles for health and social care practitioners to reflect on their interactions with people with dementia and their families. it was introduced to provide the evidence base for good practice in person-centred care in the dementia care field – particularly in relation to care home practice. to provide a way forwards for using it to implement changes in practice, the vips framework has recently been operationalized into the vpm for achieving person- centred care in norwegian nursing homes. the vpm addresses the problems of how to build a shared base of person-centred values in the staff followed by and intertwined with the challenge of seeing a situation from the perspective of the person with dementia, and further the problem of applying knowledge of pcc acquired at training what is person-centred care in dementia? figure . model with components for implementation and sustainability of person-centred care courses in concrete situations. it is regarded as feasible in care homes, but is dependent on the engagement of leadership to overcome the barriers of implementation. the next step suggested in order to sustain changes and maintain a pcc culture of care is for the vpm be a part of a system of methods that can work together to provide structure as well as openness for change. the original vips definition of person-centred dementia care grew out of a review of the literature on person-centred dementia care. this has led to a number of practical applications in the dementia care field, vpm being the most recent. vpm as a vehicle for change in norwegian care homes utilized the literature on organizational change to build a sustainable practical model. although there were issues with the frequency of the consensus meetings, they still provided a productive reflective space, utilizing principles of clarifying staff roles, education, taking the perspective of the person with dementia, valuing front-line staff, providing coaching and supervision, and having 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make the vips practice model more effective in the treatment of neuropsychiatric symptoms in nursing-home residents with dementia running head: factors influencing the implementation of person-centred care authors: janne rosvik, phd candidate, ageing and health, norwegian centre for research, education and service development, vestfold hospital trust knut engedal, research director and professor, ageing and health, norwegian centre for research, education and service development, oslo university hospital Øyvind kirkevold, assistant research director and professor, ageing and health, norwegian centre for research, education and service development, vestfold hospital trust; centre of old age psychiatry research, innlandet hospital trust; gjøvik university college, faculty of health, care and nursing corresponding author: janne rosvik e-mail: janne.rosvik@aldringoghelse.no phone: + postal address: ageing and health, oslo university hospital, avdeling ullevaal, bygg , oslo, norway key words: dementia, depression, non-pharmacological treatment, neuropsychiatric symptoms in dementia abstract background / aims: a recent cluster-randomised controlled study showed that the vips practice model (vpm) for person-centred care had a significant effect on neuropsychiatric symptoms in nursing-home residents with dementia. the rct indicated that a substantial proportion of the total variance of the effects was related to conditions in the particular unit (ward). we have explored which factors explain the variance in the effect of the vpm. methods: the vpm sub-set of data from the rct was explored using multilevel linear regression. the dependent variables were the change in scores on the neuropsychiatric inventory questionnaire (npi-q) and the cornell scale for depression in dementia (csdd). results: the unit in which the resident was living explained twenty-two per cent of the vpm's total variance in effect on the npi-q and thirteen per cent for the csdd. the intra class coefficient (icc) for the unit level was explained mainly by unit size on both scales and was considerably higher than for the institutional level. conclusion the unit is the most influential level when implementing pcc by use of the vpm. the unit size explains most of the variance of effect of the vpm, and the effects were best in the small units. introduction the treatment of neuropsychiatric symptoms (npss) in persons with dementia living in nursing-homes is important mainly because these symptoms are distressing for the residents [ ], but also because they are stressful for those who care for them [ - ]. depression is one of the most frequent npss in dementia and the highest rates are found in nursing-home studies [ , - ]. as psychotropic drugs have only a modest effect on npss and may cause severe side effects [ ], non-pharmacological treatment is recommended as the initial treatment approach [ , ] for npss, including depression. person-centred dementia care (pcc), introduced by kitwood [ ], has been widely accepted and recommended as good quality care that has the potential to prevent and reduce npss [ , ]. the elements in pcc have been summed up and described by brooker [ ] in the ‘vips framework' as valuing people with dementia (v), individualised care (i), understanding the world from the resident's perspective (p) and providing a social environment that supports the needs of the resident (s). the vips practice model (vpm) has recently been developed to implement person-centred care in nursing-home units by systematic use of the vips framework [ , ]. a multilevel randomized controlled trial (rct) conducted in in oslo, norway [ ], tested the effect of two interventions based on pcc, the vpm and dementia care mapping (dcm), on npss among residents in nursing-homes compared to lectures about dementia on dvd delivered to the staff for free use as the control condition. it was hypothesized that dcm and vpm would be more effective than giving the staff lectures about dementia on dvd in reducing agitation and other npss in nursing-home residents. furthermore, it was hypothesized that the interventions would improve the residents’ quality of life (qol). the rct showed that the implementation of both pcc methods had a significant effect on npss, as measured by the -item version of the neuropsychiatric inventory questionnaire (npi-q) [ ], compared to the control group. in addition, dcm had a significant effect on qol measured by the quality of life in late-stage dementia scale (qualid) [ ], compared to the control group, whereas the vpm had a significant effect on depression, as measured by the cornell scale for depression in dementia (csdd) [ ], compared to the control group. the effects of the two methods implied not only a reduction in npss, but also the prevention of exacerbation of these symptoms. two other studies on the effect of pcc in nursing-home populations have found reduction in use of antipsychotic drugs [ ] and decreased agitation in residents [ ], respectively. however, the rct carried out in oslo, norway , indicated a great variation in the effect between the units (wards) taking part in the study. the intra class correlation coefficient (icc) on unit level was relatively high, % for both npi-q and for csdd, indicating that a substantial proportion of the total variance of the effects was related to conditions in the particular unit. in other words, the unit constituted a contextual variable that influenced the effects of the vpm. the icc represents a measure of dependency in the data. it is defined as the proportion of the total variance of the outcome that is attributable to a contextual variable [ , ], e.g. that the conditions in a unit have influence on the behaviour of the residents. to optimize the effect of the vpm we need to know more about which variables contribute to successful implementation of the vpm. thus, we designed a study aiming to explore the variance of the effects of the vpm intervention separately. methods study design the present study is a sub-study of the rct carried out in oslo in , which was an intervention used with the staff (group level), with outcomes measured on the residents (individual level) at baseline and months later . the nursing-homes in the rct were randomized into three groups. to avoid contamination between units the staff of all the units in each nursing home received the same intervention. one group of nursing-homes was given an intervention with dcm, the next group had an intervention with the vpm and the last group constituted a common control group for both intervention groups. all three groups received five dvds with lectures ( minutes each) about dementia. thus, the staff of the control group received only this intervention. randomization was done by drawing lots ( small, medium and large nursing home in each group). the assessors were independent as they were not part of the research group. the trial was registered in clinical trial (http://clinicaltrials.gov/) in january (study id number: nct ) and approved by the regional ethics committee for medical research in eastern norway (rek-east). the vips practice model (vpm) the main element of the vpm is a weekly structured meeting in a nursing-home unit lasting for to minutes with set roles using the vips framework to analyse an interaction between a resident and a nurse in a situation where the resident has been exhibiting npss. the leading registered unit nurse (rn), and an auxiliary nurse from each unit and a rn appointed as the vips coach in each nursing home that took part in the study attended a three-day basic course, conducted by the researchers, focusing on pcc and functions in the vips practice model. the directors of the nursing-homes were also invited. the vips coach then conducted a -hour introduction to pcc and the vpm for the rest of the staff in their nursing- home. external vips experts did not visit the nursing homes during the implementation process, so the vpm relied entirely on internal facilitators (the staff who had attended the three-day basic course). participants in norway domiciliary nursing and nursing-home care are within the jurisdiction of the local authorities. the public health care system is the main provider of nursing-home services, although private care providers are playing a growing but still modest role. the nursing-home population mainly comprises people of nordic ethnic origin. the traditional way of organizing nursing-homes in norway is to run units of - residents with a registered nurse (rn) as the administrative leader. the main types of units are regular units (ru) and special care units for persons with dementia (scus). rus are sometimes divided into smaller sub-units with fewer residents, the scus may have separate strengthened sub-units (stscus) for residents with severe npss. a nurse may have a limited leading function in these smaller sub-units, but is not perceived as the authoritative leader by the staff group. how the work and cooperation between the smaller sub-units inside a unit is organized differ considerably. in some units the smaller sub-units are distinctively separated while in others they cooperate closely. the mean number of beds in a scu is . [ ]. the mean staffing ratio is . for rus and . for scus. the proportion of unskilled staff is . % in rus and . % in scus [ ]. all nursing-homes with more than beds located in the city of oslo, norway, were invited to participate in the rct. after receiving information about the study, nursing homes accepted the invitation, but one of them withdrew after randomization. criteria excluding residents from taking part in the study were a severe physical disease or a short life expectancy. if competent, the residents gave informed written consent. the next of kin of residents lacking the capacity to give informed consent were given the opportunity to decline participation on behalf of the resident, basing their decision on written information. for more details of the rct, see rokstad, rosvik et al. [ ]. eventually, nursing homes with a total of units housing residents with a diagnosis of dementia were included in the rct. of the residents, residents in units in four nursing-homes were allocated to the vpm intervention group at baseline. the mean size of the units was residents (min. , max. ), but the effects of the intervention were not evaluated in all the residents in all the units. of the included residents died and moved out of the nursing-home ( ( %) before the -month follow-up measurement. thus, a total of residents with dementia in units were analysed months later in the vpm intervention group with a mean number of . residents (min. , max. ) in each unit. dementia diagnosis the dementia diagnoses were made by two experienced geriatric psychiatrists in our research group using all the available information from the residents’ nursing-home records and the information obtained in the rct. outcome variables the dependent variables in the present study were change in score on the npi-q and the csdd from baseline to -month follow-up. these changes were statistically significant after implementation of the vpm in the rct. the npi-q contains the items delusions, hallucinations, agitation, depression, anxiety, apathy, irritability, euphoria, disinhibition and aberrant motor behaviour. the symptoms were recorded as present or not and, if present, the severity of the symptom was scored from to giving an item score ranging from to and a sum score ranging from to . a higher score indicates more severe npss [ ]. csdd is a commonly used scale for measuring depression in dementia. the scale has items evaluating various symptoms of depression. each symptom is rated on how often it occurs, = never, = periodically and = often. the scale also provides the option for scoring “not possible to evaluate”. minimum score is , maximum score is . a higher score indicates more severe depression [ ]. explanatory variables the degree of dementia was assessed by the clinical dementia rating scale (cdr) [ ], a six-item questionnaire that records information about the resident’s cognitive and functional capacity. using an algorithm, the severity of the dementia is staged as none, possible, mild, moderate, or severe. adding the scores of each item generates the 'sum-of-boxes' ( – ), which is highly correlated with the cdr score [ ]. general physical health was assessed using a modified version of the general medical health rating scale categorizing the residents’ physical health as very good, fairly good, bad or very bad [ ]. residents' characteristics such as age and gender were obtained from the residents’ nursing-home records. information on characteristics of the units was obtained by interviewing the rn in charge, using a questionnaire asking for type of unit, number of residents per unit and resident–staff ratio on day shifts . statistical analysis the subset of the data from the rct with the focus on the residents, units and nursing homes allocated to the vpm intervention group was analysed. we used a multilevel linear regression model with change in score on the npi-q and the csdd from baseline to -month follow-up as the dependent variables. multilevel analysis is an extended logistic regression analysis which can be used when data are structured in levels (e.g. resident level and unit level). it provides an estimation of the variance at for instance the unit level (difference between units) that corrects for dependency in the data (e.g.conditions in a unit influencing the residents) [ , ]. the data were treated in a hierarchical manner with the residents’ data on level and the unit data on level , because the residents constitute the first level in a hierarchy of data in which the units could be seen as the second-level variable and the nursing- home as the third-level contextual variable. the analysis has three stages. first, we calculated the icc without any predictor variable in the model (the ‘null’ model, see figure ). in the second stage, we tested each of the possible variables. lastly, as a result of the findings, the institution was treated as a level (cluster) and the residents as level . figure here. the construction of the multilevel model to analyse the effect explained by the unit as a contextual variable we built a hierarchical multilevel linear regression model. as such models take possible correlations between members of the same cluster into account it helps prevent false significant findings. the software package mlwin . (bristol, uk) was used. we first calculated the icc as described above. to find the model that best explained the variance of the icc we then performed a univariate linear regression for each of the explanatory variables with npi-q and csdd as dependent variables. we used the results to construct the multivariate linear regression model with a resident level and a unit level as described by hox ( ) [ ]. the model was built stepwise adding the variables that explained most of the variance in the univariate analysis first (table ). the variables that did not explain any of the variance were not included in the model. results table shows the characteristics of the residents by the type of units. we found significant differences between the units with respect to the residents’ age, the severity of dementia and the resident–staff ratio on a day shift. there were no significant differences between the residents that dropped out of the study and those who completed the follow-up period regarding the scores on the csdd and the npi-q or any of the resident and unit characteristics, except for the general physical health status. those who dropped out before the -month follow- up measurement had poorer general physical health (p = . ). on the npi-q and the csdd we found mean changes in scores between baseline and the follow-up at months of - . (sd . ) and - . (sd . ), respectively. the changes were fairly normally distributed (see figures and ). thus, these mean values of change could be used as outcome variables in the linear regression models. a negative change should be interpreted as a reduction in symptoms; a positive change represents an increase in symptoms. figure here figure here table shows the unadjusted mean changes on csdd and npi-q after months as a measure of the effect of the vpm on depression and npss at unit and nursing- home level. anova showed a significant difference on the npi-q (p = . ) but not on the csdd (p = . ) at the nursing-home level. a post hoc analysis showed that the mean change of the csdd was significant (p = . ) between institutions and . the icc was higher for the unit level ( . % for csdd and . % for npi-q) than for the institutional level ( . % for csdd and . % for npi-q). the residents in institution number exhibited an increase in symptoms as measured on both scales for both units. table here table below shows the extent to which the variance of a change in npi-q score and csdd score was explained at the resident level (r ) and the unit level (r ) by the multivariate regression model. regarding icc for the csdd explained by the unit, which was . %, the model explained . %, which is . % ( . * . ) of the total variance of the csdd. of the remaining . % variance of the csdd (among the residents) . % can be explained by the model, which is . % ( . * . ) of the total variance of the csdd. regarding icc for the npi-q explained by the unit, which was . %, the model explained %, which is . % ( . * . ) of the total variance of the npi-q. regarding the remaining . % variance of the npi-q (among the residents), . % can be explained by the model, which is . % ( . * . ) of the total variance of the npi-q. in total the model explained . + . = . % of the variance for csdd and . + . = . % of the variance for npi-q. table here on the unit level, smaller units were associated with a better effect than the larger units. the only stscu was associated with less effect of the vpm compared with the scus and ordinary units. other organizational characteristics like resident-staff ratio, use of temporary workers and characteristics of scus and rus were included as factors in the analyses but did not impact on the effect. on the resident level, being a woman and being older were both associated with a better effect of the vpm. discussion difference between units the already published rct showed that the vpm had a positive effect on residents’ nps and depression compared with a control group. the present study, which explores the icc, shows that there is a substantial difference in the effect between the nursing home units. the difference between the units explained considerably more of the effects ( % for the npi-q and % for the csdd) than the nursing- home (nh) of the residents did ( % and %, respectively). as shown in table , two regular units (rus) in the same nh could differ substantially. for instance, in unit number in nh number , the cornell scale score increased by . (sd . ) after months, whereas it decreased in unit number by - . ( sd . ). as a rule, the units had either an increase or a decrease in both csdd depression and npi scores after months. only one of the units had an increase in score on one of the scales and a decrease in the other, two units had no change in scores on one of the scales. this indicates that when the vpm had effect in a unit, the effect was ubiquitous. the importance of the environment in the unit on the residents’ behaviour and mood was also evident in the study of zuidema et al ( ), which revealed differences in the prevalence of neuropsychiatric symptoms between scus that could not be explained by resident-related factors like cognition and psychoactive medication [ ]. impact of conditions in the unit few studies have examined whether nursing-home characteristics or unit characteristics influence most on the effects of educational programmes for staff. the results of such studies are in line with our finding that the unit is of most importance, not the nursing-home. the study that evaluated the wellspring model, which has pcc at the core of its philosophy [ ], observed stronger variation in implementation at unit level than at institutional level [ ]. it should be noted that the wellspring evaluation had a limited quasi-experimental design [ , ]. a study implementing resident-oriented care, which has much in common with pcc, found that the success factors appeared to be related to the ward (unit) level and not to the organizational or project level. especially the supervisors' role was crucial for a successful implementation. the study had a one group pre-test versus post-test design [ ]. a study into residents’ sedative drug utilization showed that the use of pro re nata medicines was strongly determined by the characteristics of the ward (unit) the patients lived in, not so much to institutional characteristics [ ]. what organizational characteristics at unit level influence the implementation of pcc? in our study the unit characteristic that explained most of the variance of the effect was the number of beds in the unit. we have not found any other studies focusing on the impact of unit size or other unit characteristic on variation in the effect of the implementation of pcc. we did find studies focusing on the association between unit size and residents' npss which may have an impact on the implementation of pcc. the findings of these studies diverge. zuidema et al. ( ) found no association between unit size for scus and the prevalence of residents’ npss [ ]. the study by sloan et al. ( ) found an association between small unit size of scus and a low level of resident agitation [ ]. the type of unit was the second strongest explanatory variable of the icc. this finding needs to be interpreted cautiously as our model has limited statistical power and external validity. the only stscu taking part in this study was associated with a lesser effect of the vpm compared with scus and ordinary units. however, if the stscu had been excluded, the type of unit would have had no impact on the result. just % ( ) of the residents lived in this stscu. the unit consisted of two sub-units and belonged to nursing-home number , which was the only institution with an increase in symptoms on both scales on both participating units indicating that some institutional factors may have affected the results. other organizational characteristics like staffing levels and use of temporary workers did not impact on the effect. it has generally been concluded that higher staffing levels are associated with improved care outcomes [ ].the staff–residents ratio explained very little of the total variance of our model. the reason for this was that the ratio was almost the same in all the units due to the equal staffing strategy of the local authorities in oslo where the intervention took place. as we do not know of any studies on the impact of the unit staffing ratio on the implementation of pcc, we have looked at studies with outcome measures that might have a bearing on the variance in effect of the vpm. in a study on quality of care using data from nursing-homes in the whole of norway, the staffing ratio differed and the units (wards) were divided into high and low ratio groups. in that study the staffing ratio had a clear effect [ ]. however, in a review of the literature on the effect of staffing characteristics on quality of care in nursing-homes, collier et al. ( ) concluded that the limitations of the methodology used had hindered the ability to draw definitive conclusions concerning the staffing ratio [ ]. still, several studies published since indicate that staffing levels and quality are not linearly related. improvement did not continue to increase nor did it increase at a constant rate after the staffing had reached a certain threshold [ ]. this supports our interpretation that unit size explains most of the variance in effect of the vpm, provided the staff–residents ratio is the same and above a minimum level. it is maintained that the culture or climate in the team influence implementation of innovations and changes [ , ]. data on culture of care of the units in our study might have provided more knowledge about the reason for the differences in effect between the units. however, both culture of care and performance of care are concepts that are extremely difficult to define and operationalize, making the basis for the assessment complicated [ ]. the study of [ ]from residential homes in israel found that the service climate in the unit was a link to pcc behaviour. this study had a cross-sectional design which precludes inferences to be drawn. the results of a study including nurses and patients in hospital wards in sweden indicated that care climates valuing stability and control are beneficial for pcc, but that in the implementation phase a temporary transformation into a climate of flexibility was favourable [ ]. leadership is also held to be of great importance in implementation of innovations [ , [ ]. the impact of unit size on variation in the effect of the vpm may be related to the implied distance between the staff and the leader. anderson et al. ( ) found that relation-oriented leadership was related to a lower prevalence of resident behaviour problems [ ]. the vpm requires the presence of a leader with authority in a regular forum where decisions about provision of care are made to provide professional supervision and support. this secures proximity between the leader with authority and the staff. scott-cawiezell et al. ( ) found that staff from nursing-homes with low scores on quality of care complained of a lack of cohesion or team spirit. they also felt underappreciated and unheard by the leadership, in contrast to staff in high-scoring nursing homes. the study recommends that smaller neighbourhoods with an intimate environment for both staff and residents should be organized, and that the ability of nursing-home leaders to empathise with the staff and facilitate communications and teamwork should be improved [ ]. a norwegian study concluded that leaders have a central role in being continuously supportive to the care staff and taking an active part in the care practice as role models [ ]. the vpm may have harnessed the potential of smaller units as it empowers the staff by giving them central roles in the decision-making process regarding daily care. the presence of the leader in this regular forum provides a natural opportunity for the leader to give feedback and recognition on the staff’s work. impact of resident characteristics older residents were associated with a positive effect of the vpm on csdd on both resident and unit level. the fact that age explains so much of the cluster effect on csdd indicates an uneven distribution of residents’ age between the units. the same was the case for gender. as being female was an advantage for effect of the vpm on both resident and unit level, the gender cluster effect might be the result of an accumulation of women in some units. limitations most of the variance in the effect of the vpm, . % of the npi-q and . % of the csdd, remains unexplained. several probable explanatory variables have not been investigated in this study, for instance, the type of leadership, job satisfaction and the physical environment. the culture of care, which is not a variable in this study, is a factor that is considered influential when it comes to implementation [ ]. the findings in this study are not necessarily generalizable to other settings even though the units were randomly included. on the one hand, nursing-homes in oslo may differ significantly from nursing-homes in norwegian rural areas, as well as from those in other countries. on the other hand, the distribution of gender and age is quite similar to the mean regarding persons with dementia in nursing-homes in norway [ , ]. a further limitation is that the results do not assess the quality of care as such, just changes in score after the implementation of the vpm which might disguise a ceiling effect in some units. neither were differences in form of organisation, special circumstances like change of leadership nor long-term sick leave among key personnel taken into account. conclusion this study explored the variance of the effect of the implementation of the vpm in nursing-homes. the previously published rct showed that the vpm had effect on npss and depression. the exploration of these effects showed that the icc for the unit level was considerably higher than for the institutional level, and that size of the unit implying proximity to the unit leader was the variable with strongest impact. thus, we pose a hypothesis that organizational factors inside of the unit to a stronger degree impact on the implementation of the vpm than institution wide factors do. as valuing staff and their needs as well as those of the residents’ is one of the main elements of pcc, this hypothesis may apply to pcc interventions in general. we recommend that this hypothesis is researched further. clinical implications the following structural and psychosocial conditions are recommended for institutions implementing pcc by use of the vpm: units small enough for the leader to fulfil the leadership function described in the vpm proximity between staff and the leader with administrative, professional and perceived authority staffing above the minimum level reference list . wetzels r b, zuidema s u, de jonghe j f, verhey f r,koopmans r t, determinants of quality of life in nursing home residents with dementia. dementia and geriatric cognitive disorders, . 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( . ) p< . * gen. phys. health good fairly good bad very bad ( . %) ( . %) ( . %) ( . %) ( . %) ( . %) ( . %) ( . %) ( . %) ( . %) ( . %) p . ** resident/ staff on day shift mean (sd) . ( . ) . ( . ) p < . * *one way anova ** pearson chi-square test ( -sided) a the vips practise model table unadjusted mean change (s.d) in csdd and npi-q from baseline to - month follow-up measurements on unit level and nursing-home level changes at unit level changes at institutional level (nursing home) unit n/n** csdd mean change (s.d.) npi-q mean change (s.d) nh n csdd mean change (s.d.) npi mean change (s.d.) p value anova / . ( . ) . ( . ) - . ( . ) - . ( . ) csdd . a npi-q . b / - . ( . ) - . ( . ) / - . ( , ) . ( . ) / - . ( . ) - . ( . ) / - . ( . ) - . ( . ) / . ( . ) . ( . ) / . ( . ) . ( . ) . ( . ) . ( . ) / . ( . ) . ( . ) / - . ( . ) - . ( . ) - . ( . ) - . ( . ) / . ( . ) . ( . ) / - . ( . ) - . ( . ) / . ( . ) - . ( . ) - . ( . ) - . ( . ) / - . ( . ) - . ( . ) icc . % icc . % icc . %* icc . %* csdd cornell scale for depression in dementia, npi-q neuropsychiatric inventory questionnaire ordinary unit, special care unit, strengthened special care unit. a post hoc analysis showed that mean change of csdd was significant at p = . between institution and . b post hoc analysis showed that mean change of npi-q was significant at p = . between institution and , and at p = . between institution and . *here the institution is treated as level (cluster) and residents as level . ** number of residents with data on effect / number of beds in the unit. table the extent to which the variance of change in npi-q score and csdd-score is explained by the multivariate regression model r : the proportion of variance at the resident level that was explained by the model. r : the proportion of icc (unit level) explained by the model the extent to which the variance of change in npi-q score is explained variable r r by adding number of beds in unit to the model . % . % by adding unit type to the model . % . % by adding gender to the model . % . % by adding age to the model . % . % the extent to which the variance of change in csdd-score is explained variable r r by adding number of beds in unit to the model . % . % by adding age to the model by adding unit type to the model . % . % . % . % by adding gender to the model . % . % csdd cornell scale for depression in dementia npi-q neuropsychiatric inventory questionnaire figure details of the statistical procedures e = individual level variance (level ) without any exploratory variables in the model u = group level variance (level ) without any exploratory variables in the model en = individual level variance (level ) with exploratory variables in the model un = group level variance (level ) with exploratory variables in the model icc = u / ( u + e ) meaning that icc is the proportion of group level variance compared to the total variance when there are no exploratory variables in the model (null model) [ ] the proportion of the variance that is explained is expressed with r . in a multilevel model this is expressed by the total error variance. here, this is done separately for the two levels. on the first level: r = ( e - en )/ e on the second level: r = ( u - un )/ u since these formulas are for unbiased estimators and may not combine the information from the two levels correctly, we compensate for this by replacing e with e + u (and e with en + un ) at level and at level u is replaced with u + e /n (and en with un + en /n) where n is the average size of the clusters. r is the amount of variance among the residents that was explained by the model. r is the amount of icc explained by the model. figure mean change in score for npi-q* between baseline and follow up * neuropsychiatric inventory questionnaire figure mean change in score for csdd* between baseline and follow up *cornell scale for depression in dementia errata list of contents and pages , , , using dementia care mapping (dcm) and the vips practice model to develop person-centred care in nursing homes: a cluster-randomized controlled trial - replaced by the effect of person-centred dementia care to prevent agitation and other neuropsychiatric symptoms and enhance quality of life in nursing home patients: a -month randomized controlled trial 	blank page << /ascii encodepages false /allowtransparency false /autopositionepsfiles true /autorotatepages /none /binding /left /calgrayprofile (sgray) /calrgbprofile (adobe rgb \ \ ) /calcmykprofile (coated fogra \ iso - : \ ) /srgbprofile (srgb iec - . ) /cannotembedfontpolicy /error /compatibilitylevel . /compressobjects /tags /compresspages true /convertimagestoindexed true /passthroughjpegimages true /createjobticket false /defaultrenderingintent /default /detectblends true /detectcurves . /colorconversionstrategy /leavecolorunchanged /dothumbnails false /embedallfonts true /embedopentype false /parseiccprofilesincomments true 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f f e f e e b fc fc d c c e c c e> /ukr <feff a e e f c b f e d d f e a c d f c f a d a f e f c b f e a e f a d e e f a e e e a e e d e a c d c e d a f f e e f d e e> /enu (use these settings to create adobe pdf documents best suited for high-quality prepress printing. created pdf documents can be opened with acrobat and adobe reader . and later.) >> /namespace [ (adobe) (common) ( . ) ] /othernamespaces [ << /asreaderspreads false /cropimagestoframes true /errorcontrol /warnandcontinue /flattenerignorespreadoverrides false /includeguidesgrids false /includenonprinting false /includeslug false /namespace [ (adobe) (indesign) ( . ) ] /omitplacedbitmaps false /omitplacedeps false /omitplacedpdf false /simulateoverprint /legacy >> << /addbleedmarks false /addcolorbars false /addcropmarks false /addpageinfo false /addregmarks false /convertcolors /converttocmyk /destinationprofilename () /destinationprofileselector /documentcmyk /downsample bitimages true /flattenerpreset << /presetselector /mediumresolution >> /formelements false /generatestructure false /includebookmarks false /includehyperlinks false /includeinteractive false /includelayers false /includeprofiles false /multimediahandling /useobjectsettings /namespace [ (adobe) (creativesuite) ( . ) ] /pdfxoutputintentprofileselector /documentcmyk /preserveediting true /untaggedcmykhandling /leaveuntagged /untaggedrgbhandling /usedocumentprofile /usedocumentbleed false >> ] >> setdistillerparams << /hwresolution [ ] /pagesize [ . . ] >> setpagedevice exploratory study of animal assisted therapy interventions used by mental health professionals exploratory study of animal assisted therapy interventions used by mental health professionals dana m. o'callaghan, m.a. dissertation prepared for the degree of doctor of philosophy university of north texas may approved: cynthia chandler, major professor sue bratton, committee member dennis engels, committee member aubrey fine, committee member dee ray, program coordinator janice holden, chair of the department of counseling and higher education m. jean keller, dean of college of education sandra l. terrell, dean of the robert b. toulouse school of graduate studies o'callaghan, dana m. exploratory study of animal assisted therapy interventions used by mental health professionals. doctor of philosophy (counseling), may , pp., tables, illustrations, references the purpose of this study was to explore the various animal assisted interventions mental health professionals incorporate in the therapeutic treatment process, as well as the various therapeutic purposes intended with each technique. participants were recruited from animal assisted therapy related databases. participants included professionals who practiced in the mental health field. thirty one participants qualified for the study. a survey was developed based on information found reviewing literature related to animal assisted therapy. nineteen animal assisted therapy techniques and ten therapeutic intentions were identified from a review of the literature. participants were asked to rate on a likert scale how often they incorporated each technique in their treatment process. additionally, participants were asked to identify which therapeutic purposes they intended with each technique. results indicated participants incorporated a variety of animal assisted techniques for various therapeutic intentions. results indicated seven animal assisted techniques were incorporated by more than % of the participants. building rapport in the therapeutic relationship was the most common therapeutic intention reported with a variety of animal assisted techniques. copyright by dana m. o'callaghan ii acknowledgements words do not seem to accurately reflect the gratitude and appreciation i feel for those who have supported me during this process. to my loving husband, lyle, who has held my hand from day one on this journey. i thank you for your unconditional love and support as we travel this road together. to my o’callaghan and kabalican family, thank you for your love and encouragement, although many miles away. thank you to my chair, dr. chandler, for your endless encouragement during this process, as well as giving me great opportunities to explore and contribute to the field of animal assisted therapy. dr. aubrey fine, you have been an inspirational mentor in the field of aat, i can not thank you enough for all that you have done for me. also to my committee members, dr. sue bratton and dr. dennis engels, your warmth and support have encouraged me throughout my time here at unt-thank you so much. to my friends here at unt, thank you for welcoming lyle and i into your lives and becoming my secondary family in texas. iii table of contents page acknowledgements ............................................................................................... iii list of tables ............................................................................................................vi list of figures........................................................................................................ viii chapters . introduction ....................................................................................... statement of the problem ............................................................... review of related literature ........................................................... variations of animal assisted therapy programs and related studies..................................................................................... aat related literature and therapeutic implications ................... justification of animal assisted technique questions .................. purpose of the study..................................................................... . methods and procedures ............................................................ research questions...................................................................... research assumptions ................................................................. definition of terms ........................................................................ method .......................................................................................... statistical analysis ........................................................................ . results and discussion ................................................................ results .......................................................................................... demographics related to the therapy animal.............................. discussion..................................................................................... implications ................................................................................... strength of study .......................................................................... limitations ..................................................................................... future research ........................................................................... appendices iv a. consent form and mental health professional animal assisted therapy technique survey ....................................... b. participants incorporating aat by various treatment modailities .......................................................................................... c. frequency of participant's inclusion of aat techniques ............................................................................................................... references............................................................................................................ v list of tables page . demographic information ................................................................................... . educational information ...................................................................................... . mental health/licensure certification ................................................................. . frequency of participants in talk therapy ......................................................... . frequency of participants in play therapy ......................................................... . frequency of participants in activity therapy..................................................... . frequency of participants in expressive arts therapy ....................................... . technique ........................................................................................................ . technique ........................................................................................................ . technique ........................................................................................................ . technique ........................................................................................................ . technique ........................................................................................................ . technique ........................................................................................................ . technique ........................................................................................................ . technique ........................................................................................................ . technique ........................................................................................................ . technique ...................................................................................................... . technique ...................................................................................................... . technique ...................................................................................................... . technique ...................................................................................................... . technique ...................................................................................................... . technique ...................................................................................................... . technique ...................................................................................................... vi . technique ...................................................................................................... vii viii list of figures page . technique therapeutic intentions..................................................................... . technique therapeutic intentions..................................................................... . technique therapeutic intentions..................................................................... . technique therapeutic intentions..................................................................... . technique therapeutic intentions..................................................................... . technique therapeutic intentions..................................................................... . technique therapeutic intentions..................................................................... . technique therapeutic intentions..................................................................... . technique therapeutic intentions..................................................................... . technique therapeutic intentions................................................................... . technique therapeutic intentions................................................................... . technique therapeutic intentions................................................................... . technique therapeutic intentions................................................................... . technique therapeutic intentions................................................................... . technique therapeutic intentions................................................................... . technique therapeutic intentions................................................................... . technique therapeutic intentions................................................................... chapter introduction a recent report indicated that pet-related spending continues to grow. in , it was estimated that americans spent $ . billion dollars in pet-related expenditures. currently, % of u.s. households own a pet (american pet products manufacturers association, , ). such numbers suggest that pets play an important role in people‟s lives. animals no longer play the role of just family pet, in the field of animal assisted therapy; animals also have a distinct role in the helping professions. historically, animals in the helping professions can be dated back to a century ago, when florence nightingale first noted throughout effects of animal companionship on long-term hospital patients (nightingale, ). even sigmund freud illustrated the unique relationship between people and animals (beck and katcher, ). in a letter, freud wrote (p. ): it really explains why one can love an animal like topsy (or jo-fi) with such an extraordinary intensity: affection without ambivalence, the simplicity of a life free from the almost unbearable conflicts of civilization, the beauty of an existence, complete in itself. and yet, despite all divergence in the organic development, that feeling of an intimate affinity of an undisputed solidarity. often, when stroking jo-fi, i have caught myself humming a melody which, unmusical as i am, i can‟t help recognizing as the aria from don giovanni: „a bond of friendship unites us both.‟ although freud appeared to be cognizant of the therapeutic influence of animals, he did not incorporate them professionally into his work. in the field of animal assisted therapy (aat), as a whole, boris levinson is noted as the first mental health professional to document the therapeutic relationship. in the s, levinson discovered this potentially therapeutic relationship between animals and children accidentally while working with an uncommunicative patient who began speaking when she was introduced to levinson‟s dog, jingles (mallon, ). from that point on, levinson explored the relationship between his patients and animals. although others often ridiculed and mocked him about his research, levinson continued to contribute to the field of aat for much of his career (mallon). since the s, researchers have examined the role of animals in the therapeutic process; however, there is still much to learn about the various types of interventions that therapists often use in their practices, and their perceptions of the effectiveness for their clients. since levinson‟s time, animal assisted therapy continues to evolve and develop as a therapeutic intervention. various organizations have developed to advance the field of animals in the helping professions. one of the largest, non-profit organizations dedicated to the promotion of human- animal health connections is delta society ( ). in , they developed their pet partners program, which registers therapy animals and their handlers. presently, there are over , pet partners teams in all states and four other countries (delta society). with the growth of animal assisted therapy, the need for education and research in the field is vital. due to the infancy of the field, much variability exists in the literature. there is, thus, an increased need in the field to distinguish the types of animal assisted related programs and services. lajoie ( ) proposed a classification system in order to better organize the literature in this field. various terminology is used to describe the role of animals as a therapeutic tool. lajoie presented a ranking system where pet ownership was the lowest end of the ranking and described “the simplest form of a therapeutic relationship wherein there was less structure, less intensity and less focus on the relationship between the client and the animal” (p. ). while the higher end of the ranking would describe animal assisted therapy interventions. the goal of the proposed classification system was to create a clearer communication system for the field of animal assisted therapy. with such variability in terminology, there exists a lack of understanding and clarity in the field. two types of terminology that commonly are used interchangeably are animal assisted therapy (aat) and animal assisted activities (aaa). in an attempt to distinguish between the two, delta society offered the following definitions (pp. - ): animal assisted therapy: aat is a goal directed intervention in which an animal that meets specific criteria is an integral part of the treatment process. aat is directed and/or delivered by a health/human services professional with specialized expertise, and within the scope of practice of his/her profession. aat is designed to promote improvement in human physical, social, emotional, and/or cognitive functioning [cognitive functioning refers to thinking and intellectual skills]. aat is provided in a variety of settings and may be group or individual in nature. this process is documented and evaluated. animal assisted activities: aaa provides opportunities for motivational, educational, recreational, and/or therapeutic benefits to enhance one‟s quality of life. aaa is delivered in a variety of environments by specially trained professionals, paraprofessionals, and/or volunteers, in association with animals that meet specific criteria. many studies exploring the efficacy of animal assisted therapy fail to distinguish between the two forms of practice. as such, in the literature review that follows, i addressed relevant studies exploring both aat and aaa. for the purpose of the study, i explored the practice of aat in the mental health field. statement of the problem the body of literature devoted to the incorporation of animals in the mental health setting is slowly increasing. while much of the literature takes the form of anecdotal stories and personal narratives, such accounts only reveal some of the aat techniques that mental health professionals have utilized. some research indicated possible benefits associated with aat; however, it has not explained specific ways in which mental health professionals have integrated therapy animals into the therapeutic process. according to fine ( ), aat is most effective when paired with skillful mental health treatment. this further highlights the need for an in-depth look into how therapists incorporate animals into the scope of their practice. fine also cautioned, “one should not look at aat in isolation but rather observe how the animals support and augment the clinician‟s ability to work within his/her theoretical orientation (p. ).” thus, the goal of this study was to discover animal assisted techniques mental health professionals utilize within their treatment process. this study explored investigated interactions among and between a therapy animal, client, and mental health professional within the therapeutic process, and various therapeutic purposes involved in the inclusion of therapy animals within the therapeutic process. review of related literature the following is an extensive review of relevant literature and research related to aat. the review will discuss the following areas: ( ) exploration of various animal assisted therapy studies and their therapeutic implications, ( ) variations of animal assisted therapy programs and related studies, ( ) related aat literature and therapeutic implications, and ( ) justification of animal assisted technique questions. animal assisted therapy studies and therapeutic implications early history of animal assisted therapy. well before boris levinson documented his work with his dog, jingles, and his clients, other therapists had also incorporated animals into the therapeutic process. one of the earliest noted applications of aat occurred in ; coincidentally, the secretary of the interior advocated the incorporation of dogs in the treatment of psychiatric patients (burch, ). it was not until years later, however, that aat was documented again, this time, at the pawling army air force convalescent hospital in new york, among therapists working with recovering veterans (hooker, freeman, & stewart, ). then the use of animals in a mental health setting, again, was absent from the literature, until , when boris levinson published his work the dog as a “co-therapist” ( ). since the publication of this work, aat has gradually been integrated into the mental health field. levinson‟s (mallon, ) work focused on relationships among and between his child clients, the dog, and the therapist. he suggested that when a pet is incorporated into a therapeutic relationship, it is similar to a group situation, and that a new and different relationship is the basis for the treatment process. levinson included his dog in different therapeutic interventions. he explained that incorporating the dog not only provided him with more opportunities as a therapist, but it also generated more comfortable opportunities for the child to identify, project, and empathize during his or her treatment. in levinson‟s view, including an animal in the therapeutic process ultimately provided opportunities for limit setting, role playing, transference, and interpretation. animal assisted therapy studies and implications researchers began examining aspects of aat as an adjunct to that of the mental health field in the s. an early survey, for example, investigated the use of animals in psychotherapeutic settings by members of the american psychological association (rice, brown, & caldwell, ). out of the respondents, % were aware of the use of pets in psychotherapy and % had utilized animals in their own therapeutic work. a portion of the survey also investigated some of the specific uses of animals, in conjunction with psychotherapy. rice et al. found that the most common use of animals within the psychotherapeutic setting was related to facilitating the development of social relationships, but therapists also used aat as an adjunct in other interventions within the therapeutic setting. according to the researchers, “respondents also cited using an animal as a source of comfort, especially during the early stages of therapy, as a reward in behavior modification framework, and even from a gestalt perspective exploring the meaning of touch, smell, and warmth” (p. ). the survey did not ask how often the therapy animal or the various animal related techniques were incorporated in the therapeutic process. further expansion of the information found by rice et al.‟s research is needed, as well as a more in-depth exploration regarding the mental health practitioners‟ intentions for specific animal assisted techniques. one of the first controlled studies to explore the use of animals in a mental health environment was performed by corson and corson in . they called it pet- facilitated psychotherapy; and described it as an adjunct to the therapy process, making it clear that it was not intended to replace psychotherapy (corson & corson, ). their study sample consisted of patients who failed to respond favorably to other forms of traditional therapy. the patients typically exhibited symptoms of withdrawal; they were uncommunicative, and some were even confined to their beds. among the five patients they studied closely, the researchers found an increase in verbalization during the process of pet-facilitated psychotherapy, which consisted of nondirective interactions with the animals. within the hospital, dogs were kept in kennels and introduced to patients as a part of the therapeutic study. over time, patients began to interact more with the dogs, some asking to take them out on walks, while others came down regularly to visit or groom their dogs. corson and corson‟s study was ultimately one of the first to systematically examine the use of animals in therapeutic settings. in another significant study the physiological effects of human-animal interactions were investigated. odendaal ( ) examined how the presence of a dog contributes to human well-being. in this study, the healthy humans and dogs interacted positively, while blood pressure and the following parameters: β-endorphin, oxytocin, prolactin, β- phenylethylamine, dopamine, and cortisol, were measured in an attempt to examine the effects on both the humans and dogs. the results showed a significant decrease in blood pressure and cortisol for the human participants, during five to minutes of positive human-dog interactions. results also indicated for both dogs and humans there was a significant increase in β-endorphin, oxytocin, prolactin, phenlyacetic acid (metabolite of β-phenlyethylamine) and dopamine. this study was one of the first studies conducted to show the positive physiological consequences of interacting with a dog, thus providing a rationale for using animals during the therapeutic process due to a more relaxed state of being. in another study that explored the use of two styles of aat interventions with adult college students suffering from depression (folse, minder, aycock, & santana, ), the participants were assigned to either a directive aat group, in conjunction with group psychotherapy, or to a nondirective aat group. there were participants in the treatment group and in the control group. the animals played a fairly similar role in both groups; however, the animals had different personalities, which, in turn, had different affects on the group members. one of the dogs was a two-year-old female collie who was quiet and gentle, while the other dog was a seven-month-old female collie puppy that was described as energetic, outgoing, and seeking attention. while the older dog interacted less with the participants, the participants reported that he provided a safe distraction during emotionally-laden moments. the other dog, in contrast, exhibited more puppy-like behavior, which precipitated most of the conversations and interactions in that group. results did not indicate a difference among the directive versus the nondirective groups, and effect sizes were not calculated for either groups. aat interventions are also taking place in mental health settings throughout the world. a study in israel, for example, was conducted to assess the effects of aat on long-stay geriatric schizophrenic patients over the course of one year (barak, savorai, mavashev, & beni, ). the effective outcome was measured as a change in the clients‟ social-adaptive functioning evaluation (safe) scores. these scores measure such dimensions as social interpersonal, instrumental, and life skills functioning, and are rated by observations and interactions with the subjects. the aat sessions were conducted by three aat counselors, but there was no distinction made as to whether they were mental health counselors or aat handlers. the interventions consisted of activities of daily living (adl) modeling activities, which included petting, feeding, grooming, bathing, and teaching the animals to walk on a lead for greater mobility. a second goal in the treatment process was to increase mobility and socialization through walking the animals outside of the hospital grounds. at the end of the aat sessions, the participants processed the activities and had time to say goodbye to their animal companions. results on the safe scores showed that clients improved on the social functioning scale. thus, barak et al. ( ) suggested that human-animal interactions may facilitate social functioning. in another study, animal assisted therapy was found to be effective in reducing anxiety among hospitalized psychiatric patients (barker & dawson, ), the patients were categorized under four different diagnostic disorders: . % with mood disorders, . % with psychotic disorders, . % with substance abuse disorders, and . with “other” disorders. anxiety was measured by the state-trait-anxiety inventory before and after the sessions. two hundred and thirty patients participated in at least one aat group session or one therapeutic recreation group session. fifty patients completed pre and post measurements for both sessions. the aat sessions consisted of a therapy dog and semi-structured interactions with the dog handler talking about the dog and encouraging the patients to carry out commands and basic obedience with the dog. the results indicated no significant difference between the patients who participated in either aat or therapeutic recreation. the results did, however, indicate that for within group differences found for the therapeutic recreation group there was a significant decrease in anxiety for those diagnosed with mood disorders only, in comparison to the aat group which showed a significant decrease in anxiety for the patients diagnosed with mood disorders, psychotic disorders, and “other” disorders. anxiety scores for patients diagnosed with psychotic disorders considerably reduced after animal assisted therapy compared to therapeutic recreation. barker and dawson suggested that “…animal assisted therapy may offer patients with psychotic disorders an interaction that involves fewer demands, compared with traditional therapies” (p. ). the authors suggested that aat appeared to have an effect on a wider range of diagnosis. further considerations for this study include extending sessions beyond one single aat session, although this arrangement was limited due to patients being discharged at various times. barker and dawson ( ) also suggested that no significance was found, possibly because of the small number of participants who completed all measurements. in contrast, another study explored the incorporation of a therapy animal in an attempt to reduce children‟s anticipatory anxiety entering therapy sessions, as measured by children‟s bio-behavioral measurements, as well as the behavioral assessment system for children-parent rating scale (basc-prs) (athy, ). athy‟s study combined animal assisted therapy with a play therapy session during one individual -minute play therapy session. the results of the two factor repeated measures analysis of variance indicated no significant differences between the two groups. in fact, the results actually indicated an increase in the children‟s anxiety in the first minutes of play therapy with the presence of a therapy dog. athy suggested that new and unknown factors, including the play therapist, the pet, armband monitor measuring the bio-behavioral symptoms, and an unfamiliar environment, may have contributed to such results. a recent meta-analysis further explored aat studies. nimer and lundahal ( ) sought to explore three such objectives: ( ) to assess the average effect of aat, ( ) to investigate the stability of this average effect, and ( ) to evaluate whether variability in the implementation of aat and/or participants influenced outcomes. the inclusion criteria for studies included: a) reported on aat and not aaa or pet ownership, b) included at least five participants in a treatment group, c) were written in english, and d) provided sufficient data to compute an effect size (p. ). their search resulted in studies in peer-reviewed sources and dissertations. studies were divided into three broad categories, depending on presenting problems of aat recipients: medical problems, mental health difficulties, or behavioral problems. results indicated that positive, moderately strong findings were observed across the three above areas. the authors also found that due to the “complexity of interventions...and variability of aat use” (p. ) further analysis of the sub groupings is strongly suggested. although this meta- analysis offered promising results in the field of aat, such results may be premature. authors continued to emphasize the importance of research in the field. aat literature is still growing and evolving as a practice and area of research. thus, there still exists a need for further controlled studies regarding its efficacy. variations of animal assisted therapy programs and related studies more recent variations in the field of animal assisted therapy include the inclusion of animal training programs for therapeutic purposes. although most of these programs do not specifically incorporate a therapy animal into the treatment process, they do, however, integrate an animal as an essential part of the therapeutic treatment. residential treatment settings. aat has spread into different mental health settings. residential treatment programs are organized and staffed to provide both general and specialized non-hospital-based interdisciplinary services hours a day, seven days a week. residential treatment services provide environments in which the persons reside and receive services from personnel who are trained in the delivery of services for persons with behavioral health disorders or related problems (mental health dictionary, n.d.). a small number of treatment facilities across the nation have incorporated the human-animal bond. for example, green chimneys, in upstate new york, is a facility that serves adolescents who are experiencing difficulties and challenges. the unique characteristic of green chimneys is its location on more than acres, with its own -acre farm. not only are animals a fundamental factor in the treatment process, but the importance of nature is emphasized as well (green chimneys, ). green chimneys is both a residential treatment center for children with emotional, behavioral, and learning challenges, and a special education school. interacting with nature and animals in a variety of programs is an integral part of the treatment process of green chimneys. some of green chimneys‟ animal assisted programs include: east coast assistance dogs, where dogs are trained as puppies by resident teacher dale piccard, and by selected green chimneys‟ students. these dogs eventually are placed with individuals with both physical and/or motor difficulties (green chimneys, ). another creative intervention is the wildlife rehabilitation program, which takes in injured animals and educates green chimneys‟ students about the care and nurturing of the wounded animals. colorado‟s boys ranch is yet another treatment facility that features the use of aat. its program serves adolescent boys who are facing behavioral and emotional challenges (colorado boys ranch, ). the treatment teams consist of mental health professionals who use various treatment models, such as individual, group, and family therapy. many of their programs involve animal related interventions, such as new leash on life. this particular program matches each boy with a dog from a local animal shelter. over the course of ten weeks, the boys train, groom, and care for their dogs and eventually prepare the dogs to be adopted by their new families. the goal of these animal assisted programs is to increase the boys‟ learning of compassion, gentleness, responsibility, and respect for animals, other people, and themselves. a similar program was developed and studied at the chris adams girls center in northern california. the chris adams girls center is a -bed residential facility that houses female juvenile offenders, ranging from to -years-old (cobaleda-kegler, ). the residential facility incorporates an animal related program called tender loving care (tlc), with a -week course. this program includes a group process, as well as journal writing and assignment and weekly topics, designed to facilitate therapeutic work with the animals, and training sessions for the residents to learn obedience training. the interventions feature specific themes that are addressed each week. the following is a detailed description of the aat program‟s weekly topics which structure the session. week introductions, getting to know one another, respect, honesty, generosity week daily care needs: emotional, physical, psychological: caring, kindness. week understanding communication: straightforwardness. week developing healthy relationships with people and animals: compassion, trustworthiness, sincerity, integrity. week boundaries in relationships: commitment, honesty, fairness, responsibility week applying humane education in your daily life: goodwill, common good, moral obligations, citizenship, and altruism. week stress management: focus, good judgment, self-control, obey the law. week self-esteem, self-acceptance. week transformations: helloes and goodbyes: forgiveness, perseverance, resilience. week love and attachment: bonding, boundaries, mirroring. week grief and loss: coping mechanisms, comfort, anger, resistance. week closure and graduation. in addition to these outlined topics and activities with the animals, the group also meets for an hour of group therapy with the therapist to process issues raised by the individuals‟ work with the animals (cobaleda-kegler, ). another relevant study on the variations of therapeutic programs with animals explored the effects of a therapeutic animal training approach with expelled youth in an alternative high school setting (granger & granger, ). participants (n= ) were assigned to one of three treatment groups: control, individual aat, or small group aat. participants were measured on standardized teacher and student behavior rating scales (basc-the behavior assessment scale for children), as well as pre and post test observations related to student indices of direction following, acceptance of staff feedback, and respectful and caring responses toward others, in addition to differences in classroom absences (granger & granger). the results did not indicate any significant differences between changes in attitudes toward school, aggressive behavior, interpersonal relations, and classroom absences. yet, for both of the aat treatment groups, a paired samples t-test indicated a difference between teacher ratings in the area of social skills. an effect size of d=. indicated a moderate effect for increased social skills of students with adult and peer interactions within this setting, thus possibly implying the effects of enhanced social skills. qualitative interviews revealed students and staff supported the project and enjoyed their experiences. granger and granger suggested further exploration with increased participants may ultimately expand their findings. equine assisted therapy research under the umbrella of animal assisted therapy, horses and their therapeutic effects have created a variation of animal assisted interventions called equine assisted therapy. the equine and assisted growth and learning association (eagala, ), promotes equine assisted psychotherapy through research and education. the following studies highlight the effects of equine assisted therapy. a recent study explored the effectiveness of equine assisted group counseling with at risk children and adolescents. trotter ( ) examined “at risk” youth and the effects of equine assisted group counseling, in comparison to a curriculum-based group counseling intervention. the study examined the externalizing, internalizing, maladaptive, and adaptive behaviors of elementary and middle school students considered at risk of academic failure. participants participated in either a two hour, twelve week equine assisted group counseling program, or a one hour, twelve week curriculum-based group guidance treatment. results were measured on two instruments: the behavior assessment system for children-self-rating, parent-rating, and teacher-rating scales (basc), and the animal assisted therapy psychosocial session form (aat-psf) results of an ancova comparison of both groups using the basc-self, parent, and teacher reports showed statistically significant improvement in seven behaviors, compared to the curriculum-based program. results of the repeated measures anova aat-psf, which measured the equine assisted therapy group only, showed statistically significant improvement on all three scale scores: ) overall total behaviors; ) increased positive behaviors; and ) decreased negative behaviors (trotter). a new variation in the incorporation of equine facilitated therapy is the incorporation of equine facilitated therapy with couples. a recent study by russell- martin ( ) compared equine facilitated couple‟s therapy to solution-focused couple‟s therapy, as measured by relational adjustment scores on the dyadic adjustment scale (das). participants included couples, aged - , who participated in a six-week treatment program, either in the equine facilitated therapy group (eft), or in the solution-focused therapy (sft) group. the das was administered at the first, third, and sixth session of treatment. the first two administrations of the das did not result in significant differences between the groups, but the third administration did result in significant differences, with the eft group scoring higher on relational adjustment of the das. russell-martin suggested that eft and sft were both effective as treatment approaches to couples relational adjustment, as measured by the das. this study also added to the quantitative support of eft as an effective treatment approach, as seen in the results by the sixth session of treatment. aat related literature and therapeutic implications the delta society ( ) offered ten potential therapeutic implications of animal assisted therapy. . emotional safety--the therapist may be viewed as more approachable if there is an animal present. the power structure has shifted and the environment is less threatening. . relationships--clients who have difficulty developing a relationship with other human beings are able to relate to an animal. the animal can be a source of love and companionship and the client can direct feelings of love and concern for an animal when he or she may have difficulty with the expression of emotions in a human relationship. . limit setting and consequences--animals respond quickly to stimulus provided by a client. learning that there are limits to the behavior that an animal will accept can help the client generalize the concept of limits and consequences to the human environment. . attachment--an animal can offer the opportunity for uncomplicated attachment. learning the skills of attachment from the relationship with an animal will help in developing a relationship with other human beings. . grief and loss--many people have experienced the loss of a beloved animal. processing that loss can assist the client in working through issues of loss and abandonment. . reality orientation--the presence of an animal may help to ground a client in the present. . pleasure, affection and appropriate touch--the client chooses whether or not to touch or hug an animal. since he or she makes the choice, the interaction is safe, non-threatening and pleasant. . socialization--the presence of animals provides the opportunity for social interaction and interpersonal connection. . play and laughter--a client can learn how to play through interactions with an animal. . anxiety--the ability to focus on the animal rather than the internal feelings of anxiety can help the client to learn distraction skills in a non-threatening environment. although previous research has explored the efficacy of some of these applications, strong support appears inconclusive. nevertheless, literature from experts and those that practice in the field seem to support and elaborate on these findings. these days, seeing animals lingering in school hallways, or greeting children in the morning before class, is becoming a more common occurrence because school mental health professionals are recognizing the value of aat. trivedi and perl ( ) recounted the way sarah jane, a therapy dog, helped their counseling sessions with students. sarah jane‟s role is to serve as a companion for children who participate in counseling sessions. sarah jane is simply a source of comfort and unconditional acceptance for the children. trivedi and perl noted that a therapy animal does not need to be accompanied by specific interventions within the mental health session; rather, the animal‟s presence is sufficient enough to create an environment in which a child can make therapeutic gains. consequently, the presence alone of a therapy animal facilitates a sense of comfort and safety within the therapeutic environment. a recent incorporation of therapy animals, in a specific treatment modality is in the field of play therapy. vanfleet (in press) offers the following definition for animal assisted play therapy (p. ): animal assisted play therapy is the use of animals in the context of play therapy, in which appropriately trained therapists and animals engage with children and families primarily through systematic play interventions, with the goal of improving children‟s developmental and psychosocial health as well as the animal‟s well-being. play and playfulness are essential ingredients of the interactions and the relationship. vanfleet describes how therapy animals can be included in both directive and nondirective approaches in the play room. in nondirective play therapy, the therapy animal becomes another “object” in the play room with which the child can choose to incorporate into their play. if the child chooses not to involve the therapy animal into his or her play, a play therapist may include the therapy animal as a part of the tracking responses often incorporated into play therapy. in contrast, therapists can also integrate a therapy animal with more directive interventions. vanfleet describes how structured activities can include training, storytelling, fantasy play, and games (p. ). reinforcement is an integral part of behavioral therapy. wilson ( ), as one key example, stated that positive reinforcement increases the frequency of a behavior or response, followed by a positive event. rewards may act as incentives for treatment progress, or for small behavioral changes. mental health professionals who incorporate animals into the therapeutic process may add spending time with an animal as an enticement for their clients. psychologist hennie swanepoel, who works in south africa, creatively integrates spending time with a gentle elephant as a reward when a client accomplishes a new goal (kraft, n.d.). some of the literature has also reported on the key ways that animals assist in developing rapport within a therapeutic relationship. therapy animals can be a source of building rapport in the therapeutic relationship (chandler, ; fine, ). mental health professionals may appear less threatening with an animal as a co-therapist by their side. chandler suggested that a friendly, furry animal face is often all that it takes to help people who are frightened of other people to feel safer. levinson also frequently addressed this process and implied that bringing in the animal at the beginning of therapy often helps ease the client‟s reservations or anxiety. fine recounted his animals welcoming clients into his therapeutic setting, even stating that animals are influential in establishing the emotional energy within the room. thus, not only can an animal help build rapport, but a friendly animal can make the therapeutic setting safe and inviting. modeling can also take place within an animal assisted therapeutic setting. a mental health professional intentionally or unintentionally may model certain behaviors with the therapy animal. fine ( ) noted that various therapeutic moments can revolve around role modeling with a therapy animal, and those discussions with adults on boundary setting, the need to be loved and admired, and appropriate ways of interacting are all relevant to one another. for example, fine mentioned that sometimes during a session, boundaries need to be placed on the animals, which, in turn, can evolve into a therapeutic conversation on limit setting. fine ( ) also noted that when he incorporated modeling into his therapeutic sessions, discussions regarding limit setting sometimes would arise. levinson, however, discussed limit setting as a specific, animal assisted intervention topic. although setting limits often arises from a child‟s spontaneous behavior, levinson found that limit setting was often an integral part of the therapeutic process. he shared his experiences, in which some of his clients expressed desires to hurt or kill his dog, and although he did not discourage children from expressing themselves, such moments facilitated discussions about setting limits and boundaries with his child clients. justification of animal assisted technique questions kruger and serpell ( ) described animal assisted interventions as any intervention that intentionally includes or intentionally incorporates animals as a part of the therapeutic or ameliorative process or milieu. a review of the literature related to aat within mental health settings indicates that animal assisted interventions may incorporate a variety of therapeutic techniques prompted by the mental health professional incorporating the therapy animal into the process. as such, chandler ( ) described aat as a therapeutic modality which can be integrated with various theoretical orientations and complement a range of techniques. for the purpose of this study, the researcher examined the specific therapeutic techniques that utilized the therapy animal as a part of the therapeutic process, regardless of theoretical orientation. what follows describes the various animal assisted techniques found in the literature, which served as a basis for the survey questions. relational techniques. chandler ( ) highlighted various animal assisted therapy techniques and their therapeutic implication. one of the common uses she described as basic relational techniques. she suggested that “it can be very therapeutic to reflect, paraphrase, clarify, and summarize the behaviors and expressions of the therapy pet, the client, and the interactions between them” (p. ). chandler described some responses incorporating her therapy dog, rusty, for example, “a moment ago you seemed a little anxious and your voice was fast and high-pitched. now as you sit there stroking rusty‟s fur, you seem quieter and more introspective.” responses can relate to the client‟s nonverbal interactions with the animal, as well as the client‟s relationship with the animal. statements such as these may contribute to clients‟ increased self- awareness or self-exploration during therapeutic sessions. facilitating touch. touch between a mental health professional and a client has had controversial and ambiguous results. pattison ( ) suggested that clients who engaged in touch often experienced deeper exploration and evaluated their therapeutic experience more favorably. animals may fulfill the client‟s need for physical touch or contact. chandler ( ) addressed the animal‟s ability to act as an alternative for physical contact from the mental health professional. unlike sand or inanimate objects, according to chandler, live animals engage in affectionate behaviors that reinforce the therapeutic benefits of touch. as such, therapists who practice aat have provided examples of the therapeutic benefits of this form of contact between animals and humans. for example, brenda dew ( ) shared her experiences with her therapy dog, moses, whom she described as her co-therapist. she explained that moses often allowed her clients to touch and pet him without overwhelming the clients. in a similar fashion, laurie burton ( ), a school counselor, illustrated how her therapy dog, blaze, provided a soft touch during an individual session with a young boy, explaining that the boy hugged and petted blaze, as he conversed with her during their meetings. walking therapy. another animal assisted technique, which fine ( ) described as providing an alternative to a traditional mental health setting, is what he called “walking therapy.” over the course of his therapeutic work, his birds and dogs often accompany his clients on walks around his private practice neighborhood. during these walks, fine often facilitates therapeutic discussions on the animals‟ spontaneous behaviors. fine also noted that connecting with the outdoors and nature enhances the therapeutic discussions for some of his clients. the incorporation of “therapeutic walking” or “walking therapy” does not require a directive setting. instead, it offers a nondirective and natural animal assisted intervention. obedience training and tricks. teaching obedience to an animal, most often times a dog, requires patience and determination on the part of the trainer. fine ( ) shared his experiences with some of his clients and incorporated such training as a part of the therapeutic intervention. fine reported that a part of the process is connecting how “the process of change in the animal has [a] similar objective to their own treatment goals.” teaching an animal a trick or commands is a growing trend in many therapeutic programs involving animals. for example, second chance is a program that pairs at- risk offenders with shelter dogs to train the dogs on basic obedience and socialization. such programs offer both the animals and the youth opportunities to practice empathy, responsibility, and kindness. the concept of obedience training is incorporated in both therapeutic programs and individual treatment sessions. chandler ( ) described her experience with clients engaging in trick training with her therapy dogs. although at times a client may experience frustration when a therapy animal is not performing a certain trick, finally accomplishing these tasks may enhance feelings of self accomplishment and pride. history sharing. chandler ( ) suggested incorporating animals when attempting to gather information about a client‟s family history, such as in a genogram. genograms are schematic diagrams of a family‟s relationship system, used to trace recurring family patterns over the generations (corsini & wedding, ). genograms can be used for various reasons and in various fashions as a part of a therapeutic intervention. chandler proposed “when the therapy animal has a pedigree with some type of registry, such as american kennel club for dogs, sharing the animal‟s family ancestry is a fun way to introduce the client‟s own family tree exercise” (pp. - ). these techniques may lead to clients sharing of their own family history or social support. creating metaphors. mental health professions often use metaphors when communicating during the therapeutic process. both chandler ( ) and fine ( ) addressed the utilization of metaphors related to therapy animals for the therapeutic process. fine noted incorporating his therapy birds metaphorically within the therapeutic process. chandler suggested that using animal-related metaphors in therapy is based on the idea that even though the imagery and metaphor briefly shift the focus to the animal, clients tend to process the animal‟s experience or story through their own perspectives, which draws from their own life experiences. story telling. in the literature, mental health practitioners have identified specific interventions from their experiences with incorporating animals into their work. for example, reichert ( ) addressed the use of aat with a population of sexually abused children. reichert identified storytelling as an integral part of the therapeutic process in working with these children, and that animals also play a role in that process. reichert also stated that although animals can play an important part of the treatment, aat does not stand alone in treating sexually abused children; rather, it must be used in conjunction with other types of therapy. one such approach integrates indirect interviewing through the animal to help gather information from small children. for instance, reichert described a social worker generating questions, such as, “buster would like to know how old you are.” reichert illustrated a further use of the animal relationship specifically to the purpose of disclosure. the social worker may encourage children to reveal their sexual abuse story to the animal in the session; they also may choose to whisper their story into the dog‟s ear. reichert described a story related to a challenge that the animal encountered, which was followed by questions connected to the story. many possible stories could be created to suit a child‟s specific experiences. reichert claimed that by integrating the animal into the story, the social worker gives children an opportunity to identify with the animal and project their feelings onto the animal, thus facilitating disclosure and the expression of feelings. role playing. another technique that mental health professionals can incorporate within the therapeutic process is the use of role playing. depending on mental health professionals‟ orientation and approach, role playing may differ in its purpose and structure. therapy animals can participate in scenarios in which children act out their imaginative role plays. nebbe ( ) implied that role playing with an animal can lend insight into the child‟s personal struggles. levinson (mallon, ) referred to the technique of “behavioral rehearsal” as a possible animal assisted intervention. he suggested that the child and the mental health professional, along with the animal, can act out traumatic situations. role plays tend to be a more directive intervention and, therefore, require more guidance from the mental health professional. spontaneous interactions. evidence of the physiological implications or effects and the social benefits of human-animal interactions in therapeutic settings in related literature also suggests that having an animal in a therapeutic setting may facilitate the therapeutic process in unintentional ways that may create new opportunities for clients‟ further exploration and awareness. animals can display behaviors spontaneously, without being directed by the therapist. as such, animals can provide unprompted interactions that can result in beneficial therapeutic exchanges. dew ( ), for example, depicted the following interaction that took place during a therapy session with her co-therapist, moses (p. ): as i began the session discussing why he was here, all the client would do was to grunt unintelligible english, which was becoming frustrating for me as well as for him. suddenly, i caught a glimpse of my partner rising from his seat and walking over to the client. moses sat directly in front of the client, gazed into his eyes with his soft brown eyes and placed his paw on the client‟s lap. i worried that the client might feel his space was being invaded, so i started to reprimand moses for violating this person‟s territory. much to my surprise, the client began to touch moses and speak to moses in excellent english. once again, moses had initiated an action that allowed me to join with the client. spontaneous interactions may provide therapeutic moments, but the occurrence of such moments are not directed or initiated by the therapist. in sum, given some of the interventions described throughout the literature reviewed herein, mental health professionals appear to utilize animal assisted therapy within their practices, coupled with other therapeutic techniques. therefore, a closer look into these aat interventions, and how they are incorporated into the therapeutic process itself, may further uncover how animal assisted therapy is practiced. purpose of the study the purpose of this study was to determine the various interventions that mental health professionals incorporate during their aat relationships. this study attempted to clarify the different animal assisted techniques, as well as explored which techniques were incorporated more often than other interventions in therapeutic relationships. the outcome of this study may ultimately shed much light on how mental health professionals are incorporating therapy animals into therapeutic settings, and the results could also provide information on how animals are an adjunct to the therapeutic relationship. although, mental health professionals have incorporated therapy within their practice for quite some time, the process of animal assisted therapy remains ambiguous. this study describes various ways mental health professionals integrated therapy animals into their practices. chapter methods and procedures research questions what types of animal assisted therapy interventions do mental health professionals incorporate into their practice and how often do they utilize these interventions? further, for what therapeutic intentions (purposes) do they utilize specific animal assisted therapy interventions? research assumptions . mental health professionals who practice aat utilize a variety of aat techniques. . mental health professionals who practice aat incorporate some aat techniques more often than others. . mental health professional incorporate aat techniques for different therapeutic intentions. definition of terms animal assisted therapy refers to a “goal-directed intervention in which an animal that meets specific criteria is an integral part of the treatment process. aat is directed and/or delivered by a health/human service professional with specialized expertise, and within the scope of practice of his/her profession. aat is designed to promote improvement in human physical, social, emotional, and/or cognitive functioning [cognitive functioning refers to thinking and intellectual skills]. aat is provided in a variety of settings and may be group or individual in nature. this process is documented and evaluated” (delta society, ). animal assisted techniques refers to “any intervention that intentionally includes or incorporates animals as part of a therapeutic or ameliorative process or milieu (kruger and serpell, , p. ). mental health professional refers to a licensed practitioner or licensed intern in the field of mental health. center for animal assisted therapy mental health professional refers to a member of the university of north texas, center for animal assisted therapy‟s database who has identified themselves as a mental health professional working with a registered therapy animal. delta society identified mental health professional refers to a member of delta society who has identified themselves as a mental health professional working with a registered therapy animal. yahoo animal assisted therapy professional online group refers to an online group connected to yahoo search engine, which members consist of professionals or paraprofessionals involved in animal assisted therapy. method participants participants were recruited from three sources: delta society‟s database, the center for animal assisted therapy‟s identified mental health professionals, and yahoo‟s animal assisted therapy online professional group. participants were selected by including those members identified as mental health professionals or mental health professional interns who are currently practicing animal assisted therapy or have practiced animal assisted therapy. due to the specialized nature of these participants purposive sampling was utilized. nardi ( ) described purposive or judgmental sampling as a technique used in order to gather a sample for a unique purpose or when the researcher knows they have particular traits that are of interest to study. members from delta society‟s database and the center for animal assisted therapy‟s database were first contacted regarding participation in the research and then i posted a message to the yahoo online aat professional group when discovering its existence online. instrument initial survey questions were developed to gather demographic information pertaining to the mental health professional and the therapy animal. thomas ( ) suggests demographic information provide a profile of the respondents, thus the demographic questions included as many response categories as possible. according to groves, fowler, couper, lepkowski, singer, and tourangeau ( ) respondents are hesitant to provide answers that are not explicitly requested in the responses. demographic survey questions included: gender, date of birth, racial/ethnic identification, professional discipline, licensure, environment where animal assisted therapy is practiced (such as school setting, private practice, community agency, etc.), primary population participant serves, theoretical orientation (if applicable), number of years as a mental health professional, and number of years incorporating an animal into their professional practice. survey questions were designed in closed format. a closed format is known to produce standardized data and provide clarity for the respondents (fink, ). fink suggested guidelines for presenting uncluttered survey questions by instructing respondents how and where to mark the responses and emphasizing any special tasks or requirements in the question. questions followed such guidelines in order to promote clarity and accuracy of data collection. due to the inclusion of a therapy animal in the therapeutic process, the demographic section of the survey also included questions related to the therapy animal in order to provide a thorough picture of the respondents and their animal assistants. these questions were also formatted with wording that makes sense for the intended respondents. these questions addressed information regarding the therapy animals, such as number of therapy animals utilized in practice, type of animal or animals utilized in practice, age, breed, sex, and certification of therapy animals. further questions also related to ownership of the therapy animal, the process of introducing the therapy animal to clients, and amount of time therapy animal is included into therapy practice, and reasons why a therapy animal may not be included in session. these questions were designed in order to gather information regarding the different aspects of the therapy animal and the process of incorporating a therapy animal into practice. the above questions were inclusive and exhaustive in order to gather as much information from the respondents as needed to present a clear profile. the second portion of the survey instrument asked questions regarding the specific animal assisted therapy techniques mental health professionals utilize in the therapeutic process and the intended purpose of those techniques. survey questions were formed from an in-depth review of literature on animal assisted therapy, specifically regarding techniques and the benefits of techniques. nineteen aat techniques were identified from the literature review. regarding aat techniques respondents were asked to rate on a likert scale how often they utilized each of the techniques with their clients: =never, =seldom, =often, =always. in addition, ten therapeutic intentions were identified to represent the purpose or reason the therapist utilized a certain technique. respondents were asked to identify the therapeutic intentions they associated with each specific animal assisted technique. respondents were also given the option to choose the category “other” therapeutic intention, and asked to describe any other therapeutic reason they may utilize a specific animal assisted technique. open ended questions were also included toward the end of the survey to inquire about various activities and spontaneous moments that have occurred with the incorporation of a therapy animal in the therapeutic process. i consulted with a statistician regarding survey design. in addition to consulting with a statistician, i conducted an expert review with six specified mental health professionals who incorporate therapy animals into their practice and are knowledgeable about animal assisted therapy, in order to test the clarity of the survey questions and to receive feedback for improvement of the survey design, as suggested by fink ( ). i incorporated the expert reviewers‟ comments and made appropriate modifications to the survey design and questions. data collection participants were initially contacted to determine their willingness to participate and to determine whether they preferred an electronic or paper version of the survey. surveys were delivered either through e-mail or postal mail depending upon the preference of the participant. groves et. al ( ) noted the use of various modes of data collection allowed respondents to choose an option most suitable for them. from the delta society database of mental health professionals, were sent an electronic version of the survey while members, who had mailing addresses only, were sent a paper version. from the center for animal assisted therapy, members were contact, were sent an electronic version and five of these members requested paper surveys. lastly, four members from the yahoo online aat professional group contacted me in order to request an electronic survey in response to an e-mail invitation to participate. a total of surveys were distributed. forty one professionals responded to the survey, yielding a % response rate. of those that did respond, ten did not qualify for various reasons: one respondent did not have a license in mental health and the other respondents did not practice aat in a professional mental health setting. thus, a remainder of thirty one (n= ) participants qualified and were analyzed for the study. although borque and fielder ( ) noted response rates for online surveys tend to be low, higher response rates were found in professional membership organizations due to members‟ higher motivation. those who practice aat tend to be interested in helping the field grow. for example, two respondents contacted me in order to clarify their qualifications and reported filling out the survey, even though they were unsure if they qualified but hoped that their information would be helpful. surveys were available to fill out for a specified time of four weeks. after two weeks, a follow up email or postal letter were sent out to remind participants of the time frame to fill out the survey. follow up reminders sent in the mail also included an extra copy of an informed consent letter and a copy of the survey. follow up emails included a link to the survey. several methods were used to further increase survey participation and response rate. first, the survey introduction was personalized. second, the format of the survey was carefully constructed to be as quick and simple to complete as possible. third, incentives were used to increase survey participation. borque and fielder ( ) suggested that incentives not only encourage respondent participation, but some incentives can illustrate to participants “…their time is valuable and worth compensation” (p. ). participants in this study were offered a drawing for a $ . gift certificate to a popular pet store that offers local and internet shopping. due to the nature of the study, the pet store gift certificate seemed appropriate for those working with animals. statistical analysis data was inputted into a statistical package for the social sciences (spss) program. spss is an inclusive program most often used for analyzing research data in the social science field (gall, gall, and borg, ). due to the limited amount of research in the field of animal assisted therapy, particularly in relation to animal assisted techniques, this study‟s intent was an exploratory design. exploratory research is performed in order to better understand what is happening on an underdeveloped topic for which there is a lack of information (nardi, ; heppner, kivlighan, and wampold, ). due to the exploratory nature of the study, descriptive statistics, frequency tables, and percentages were used to analyze most of the data. additionally, due to the low response rate, analysis exploring group differences could not be run. a crohnbach alpha was utilized with non-demographic items to analyze internal consistency of the survey. there are various types of missing data and several ways to address missing data in research (lynch, ). for these results, missing data was adjusted by substituting the overall mean. when a small amount of missing data exists, substituting the overall mean is a common strategy (fink, .). a majority of participants completed the entire survey. i also noted in the results section when participants did not have a response. chapter results and discussion this chapter describes analysis of the data collected to address the stated assumptions and research questions: what types of animal assisted therapy interventions do mental health professionals who practice animal assisted therapy incorporate into their practice and how often do they utilize these interventions? further, for what therapeutic intentions (purposes) do they utilize these specific animal assisted therapy interventions? data were collected using both online survey method and paper based mail surveys. data were coded and analyzed using spss . statistical data analysis program. results respondents were first asked to answer questions related to demographic information: date of birth, gender, ethnic identification, as well as information regarding their occupation and licensure information. due to the study exploring the practice of mental health professionals, much information was gathered regarding their professional information. the participants were comparably distributed by gender, ( . %) respondents identified as male and ( . %) female, one ( . %) participant did not respond. most participants were between the ages of and . two ( . %) participants did not indicate date of birth. all respondents identified their ethnic group as caucasian (see table ). table demographic information variable n percentage gender male . female . no response . age - . - . - - - . no response ethnic identification caucasian participants were asked about their academic degree in a mental health field. of the participants, all reported having a college degree, with the majority having a masters‟ degree (see table ). those who were not licensed/certified or licensed/certified interns were not included in the study. in regards to their mental health licensure/certification, most participants reported having a license as either a professional counselor or a clinical social worker. some participants reported having multiple licenses, thus the number of licenses adds to a number greater than the number of participants (see table ). table educational information highest degree in mental health field frequency percentage college degree college . masters degree doctorate degree masters‟ . . table mental health licensure/certification information mental health licensure/certification frequency percentage marriage and family therapist marriage and family ther apistp . professional counselor . clinical social worker clinical/counseling psychologist . . school psychologist school counselor . chemical dependency counselor . sex offender treatment provider . (table continues) table (continued). mental health licensure/certification frequency percentage interns . participants were asked to identify their mental health guiding theory for client conceptualization. two ( . %) participants indicated adlerian theory, eight ( . %) indicated cognitive behavioral theory, one ( . %) reported family systems, one ( . %) reported humanistic, two ( . %) indicated gestalt theory, fourteen ( . %) reported conceptualizing clients from various theoretical orientations, and three ( . %) indicated the other category. participants were asked how many years they have practiced as a mental health professional. responses ranged from one year to years. four ( . %) indicated practicing in the mental health field from one to five years, five ( . %) indicated six to ten years, six ( . %) participants to years, nine ( . %) reported to years, three ( . %) indicated to , and four ( . %) reported to years. demographics related to the therapy animal the survey also contained questions related to participants‟ practice involving the therapy animal. questions were designed to obtain a detailed picture of how a therapy animal is incorporated into their practice. participants were asked how many years they have incorporated a therapy animal into their mental health practice. participants‟ responses ranged from one to years. nineteen participants ( . %) reported one to five years, five ( . %) indicated six to ten years, five ( . %) reported - years, and two reported - years. participants indicated the various therapy animals they have incorporated into therapy. of the respondents, ( . %) reported working with dogs, two ( . %) indicated working with cats, two ( . %) reported working with horses, and six ( . %) reported working with multiple animal species such as both dogs and horses, or dogs and cats. of the six participants who indicated working with multiple species, one ( . %) participant indicated working with a guinea pig, and one ( . %) respondent reported working with a mini donkey. the most common dog breed reported was golden retriever. most of the animals were registered as therapy animals through delta society, therapy dogs international, or the american kennel club‟s canine good citizen certification. participants were asked to describe setting in which they primarily practiced aat. fourteen ( . %) participants reported private practice as the primary place they practice aat, four ( . %) indicated a community agency, three ( . %) reported a middle school, two ( . %) responded practicing on a college campus, three ( . %) indicated a hospital, three ( . %) reported an elementary school setting, one ( . %) indicated a residential treatment center, and one ( . %) described more than one location as their primary setting where they practiced aat(see appendix). some of the other locations indicated as places where participants practiced aat were an adoptive agency, outpatient child guidance clinic, outpatient psychiatric program, a barn, nursing home, and a preschool. participants were asked what percentage of time they practiced aat in various treatment modalities. responses were grouped according to a) percentage of time aat was incorporated, b) therapeutic modality practiced, c) treatment format (individual or group), and d) population served (children, adolescents, adults, and elderly). the following results are not mutually exclusive. participants incorporated aat most frequently into talk therapy, play therapy, activity therapy, and expressive arts therapy. of the participants, ( . %) reported practicing talk therapy, ( %) reported practicing play therapy, six indicated practicing ( . %) activity therapy, six ( . %) reported practicing expressive arts therapy, five ( . %) reported practicing sand tray therapy, four ( . %) indicated practicing adventure therapy, three (. %) practiced biofeedback therapy, one ( . %) reported practicing music therapy, and one ( . %) also reported practicing drama therapy. tables four through seven present the frequency of aat therapy practice for the four most common treatment modalities reported; table data include format (individual or group), population (children, adults, or elderly), and percentage of time aat is incorporated. for a complete list of tables by each treatment modality see appendix b. table frequency of participants incorporating aat in talk therapy %- % %- % %- % %- % children individual group adolescent individual group adult individual group elderly individual group table frequency of participants incorporating aat in play therapy %- % %- % %- % %- % children individual group adolescent individual group adult individual group elderly individual group table frequency of participants incorporating aat in activity therapy %- % %- % %- % %- % children individual group adolescent individual group adult individual group elderly individual group table frequency of participants incorporating aat in expressive arts therapy %- % %- % %- % %- % children individual group adolescent individual group adult individual group elderly individual group respondents were asked how often they practice aat. participants reported the following: five ( . %) reported once a week, six ( . %) reported twice a week, three ( . %) indicated three times a week, five ( . %) reported four times a week, six ( . %) reported five times a week, four ( . %) indicated three times a month, and two ( . %) reported that it varies how often they practice animal assisted therapy professionally. participants were asked whether or not the therapy animal is present with every client; eight ( . %) reported the therapy animal is present with every client, ( . %) indicated that the therapy animal is not present with every client; one ( . %) participant did not answer. participants reported some of the reasons for not including the therapy animal with every client. animal allergies and appropriateness of client for aat were commonly reported as reasons why a therapy animal was not included. some participants reported that clients had a fear of animals, history of abuse of animals, clients with impulsivity, or phobias related to animals may not be appropriate for animal assisted therapy. some participants also indicated that some of their clients have no interest in working with a therapy animal. some also noted that depending on their work schedule some days are not conducive for the animal‟s welfare, such as long hours. when asked if the therapy animal is introduced to the client in the first session respondents answered the following, ( . %) reported yes, the therapy animal(s) is introduced to the client(s) in the first session; ten ( . %) indicated that they did not introduce the therapy animal in the first session, one ( . %) participant did not respond. those who did not include the therapy animal in the first session indicated some of the reasons as to why they did not include the therapy animal in the first session; such as evaluating for the clients‟ appropriateness of working with a therapy animal; for example if they have a fear of animals. one participant indicated having a book that they created about their therapy animal and has the child read the book and discuss what their session would look like if the therapy animal was included. some participants indicated wanting to assess clients and situation in order to evaluate the animal‟s welfare as well. participants tended to think about the welfare and comfort level of both the client and therapy animal. participants also indicated whether a therapy animal was typically present the entire amount of time during the session. of the participants, ( . %) indicated that the therapy animal was present during the entire session, three ( . %) reported that the therapy animal was not present during the entire session. one participant explained that they could not make a therapy cat stay during the entire session, if the cat decided it wanted to leave. participants were also asked whether they were the primary caregivers of the therapy animal, ( . %) indicated they were the primary caregiver, two ( . %) reported they were not the primary caregiver. one participant indicated they were primary caregiver of one therapy animal, but not of another therapy animal that was incorporated into their practice. assumption mental health professionals incorporate therapy animals in conjunction with a variety of therapeutic techniques. a list of therapeutic techniques involving the therapy animal were listed and reviewed by a panel of experts. these techniques were compiled based on the literature described in chapter one. participants were asked to rate how often they incorporated these animal assisted techniques in their mental health treatment process. participants rated their use of the specific techniques on a likert scale with =never, =seldom, =often, and =always. it was assumed that mental health professionals utilized a variety of techniques, which incorporated the therapy animal, into the therapeutic process. one item, “spending time with therapy animal is a reward for progress in therapeutic treatment,” was not analyzed due to its lack of clarity and inclusion of a therapeutic intention within the question. for a table of results see appendix c for the techniques that were analyzed. one of the participants did not answer these ratings. technique . therapist reflects or comments on client‟s relationship with therapy animal. all participants reported incorporating this technique. nineteen ( . %) reported often reflecting or commenting on client‟s relationship with the therapy animal, nine ( %) indicated always. two ( . %) participants reported seldom practicing this technique. technique . therapist encourages client to interact with therapy animal by touching or petting therapy animal. all participants reported incorporating this technique with their clients, similarly to technique one. most participants reported practicing this technique often (n= , . %), six ( . %) participants reported seldom, and five ( . %) reported always. technique . therapist encourages client to play with therapy animal during session. results for this technique indicated that most participants reported often (n= , . %) and eleven ( . %) reported seldom. three ( . %) participants reported never, and one ( . %) reported always. technique . therapist encourages client to tell therapy animal about client‟s distress or concerns. most participants reported seldom (n= , . %) or never (n= , . %) encouraging the client to tell therapy animal about their distress or concerns. five ( . %) reported often, and ( . %) reported always. technique . therapist and client engage with therapy animal outside of traditional therapeutic environment; i.e. taking therapy animal for walk. results indicated this technique was less likely to be practiced among participants. ten ( . %) reported never, seven ( . %) indicated seldom, ( . %) reported often, and two ( . %) indicated always. technique . therapist interacts with therapy animal such as having animal perform tricks. results suggested that participants were rather split on whether they interacted with the therapy animal such as having the animal perform tricks. ten ( . %) participants reported never, six ( . %) indicated seldom, ( . %) reported often, and one ( . %) indicated always. technique . therapist encourages client to perform tricks with therapy animal. most participants indicated either never (n= , . %) or seldom, ( . %) encouraging the client to perform tricks with therapy animal. six ( . %) participants indicated often, and four ( . %) reported always. technique . therapist encourages client to perform commands with therapy animal. most respondents indicated incorporating this technique to some degree. six ( . %) respondents indicated never, eight ( . %) indicated seldom, ( . %) reported often, and ( . %) indicated always. technique . therapist comments or reflects on spontaneous client animal interactions. all participants indicated commenting or reflecting on spontaneous client animal interactions. results showed participants often (n= , . %) or always (n= , . %) incorporated this technique. three ( . %) participants, on the other hand, reported seldom. technique . information about therapy animal‟s family history (breed, species, and so forth) is shared with client. results for this technique indicated that most respondents reported often (n= , . %) or always (n= , . %) sharing information about therapy animal‟s family history. in contrast, three ( . %) participants responded never and eight ( . %) indicated seldom. technique . history related to therapy animal is shared with client. results indicated participants had a variety of responses for this technique. seven ( . %) participants indicated always incorporating this technique, whereas ( . %) reported often. conversely, eight indicated seldom ( . %) and three ( . %) reported never. technique . animal stories and metaphors with animal themes are shared with client by therapist. many of the participants reported sharing animal stories and metaphors with animal themes. fourteen ( . %) respondents reported often incorporating this technique, and three ( . %) indicated always. nine ( . %) indicated seldom, and four ( . %) reported never practicing this technique. technique . therapist encourages the client to make up stories involving the therapy animal. a majority of clients reported never or less likely incorporating this technique. fifteen ( . %) indicated never encouraging the client to make up stories involving the therapy animal. eleven ( . %) responded seldom, and four ( . %) responded often. technique . therapist utilizes the client-therapy animal relationship, such as: “if this dog were your best friend, what would he know about you that no one else would know?” and/or “tell rusty (therapy dog) how you feel and i will just listen.” results indicated participants were rather split regarding practicing this technique. eleven ( . %) reported often incorporating this technique. eight ( . %) indicated seldom, and ten ( . %) reported never. technique . therapist encourages client to recreate/reenact experience where therapy animal plays a specific role. a majority of participants indicated never (n= , . %) encouraging a client to recreate/reenact experience where therapy animal plays a specific role. six ( . %) respondents indicated seldom integrating this technique, and five ( . %) indicated often. technique . therapy animal is present without any directive interventions. over half of the respondents reported that the therapy animal is present without any directive interventions. nineteen ( . %) indicated this occurs often, and four ( . %) indicated always. in contrast, one ( . %) reported never and six ( . %) indicated seldom. technique . therapist creates specific/structured activities with therapy animal. results indicated participants were closely split regarding this technique. eleven ( . %) respondents reported often and three ( . %) indicated always. whereas seven ( . %) respondents indicated seldom, and eight ( . %) reported never creating specific/structured activities with therapy animal. technique . therapy animal engages with client in spontaneous moments that facilitate therapeutic discussion. all participants indicated the therapy animal engages with client in spontaneous moments that facilitate therapeutic discussions to some degree. a majority of respondents reported this exchange happens often (n= , . %). four ( . %) indicated seldom and another five ( . %) reported always. assumption mental health professionals incorporate some animal assisted therapy techniques more often than others. of the therapeutic techniques, results indicated certain techniques to be more commonly integrated as reported by a majority of the participants. the following techniques were identified as often or always utilized by a majority over % of the participants. . therapist reflects or comments on client‟s relationship with therapy animal. . therapist encourages client to interact with therapy animal by touching or petting therapy animal. . information about therapy animal‟s family history (breed, species, and so forth) is shared with client. . history related to therapy animal is shared with client. . animal stories and metaphors with animal themes are shared with client by therapist. . therapy animal is present without any directive interventions. . therapy animal engages in spontaneous moments that facilitate therapeutic discussion. results indicated one technique was reported by a majority of participants as never practiced in therapy, that is they never encouraged the client to recreate/reenact experience where therapy animal plays a specific role. assumption mental health professional incorporate specific animal assisted interventions for certain therapeutic intentions. in addition to rating the frequency of use for the different animal assisted techniques, participants were asked to identify the types of therapeutic intentions, or purposes, for which an animal assisted technique was applied. seventeen, of the techniques were listed, due to technique relating to spontaneous moments. ten therapeutic intentions were identified from the literature review. the following tables and graphs present the frequency of participants‟ responses indicating therapeutic intentions for each animal assisted technique that was used. a majority of participants indicated that for technique one, “reflecting or commenting on the client‟s relationship with the therapy animal” served several different therapeutic intentions or purposes. the most common intention was to “build rapport in the therapeutic relationship.” the second most common intention was to “enhance relationship skills.” technique : therapist reflects or comments on client’s relationship with therapy animal. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward . i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. the most common therapeutic intention reported for technique , “the therapist encourages the client to interact with the therapy animal by touching or petting the therapy animal,” was “building rapport in the therapeutic relationship.” the second most a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions common intentions were both “enhancing relationship skills” and “enhancing trust within therapeutic environment. technique : therapist encourages client to interact with therapy animal by touching or petting therapy animal. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship b. facilitating insight c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward . i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions results for technique , “encourage client to play with therapy animal,” indicated participants reported two therapeutic intentions as the most common, “enhancing client social skills” and “enhancing client relationship skills.” technique : therapist encourages client to play with therapy animal during session. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward . i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions results for technique , “therapist encourages client to tell therapy animal about client‟s distress or concerns,” indicated participants most commonly reported “enhancing trust within therapeutic environment”. the second most common intention reported was “encouraging sharing of feelings.” technique . therapist encourages client to tell therapy animal about client’s distress or concerns. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions results for technique , “engaging with therapy animal outside of traditional therapeutic environment”, were evenly distributed among most intentions. three intentions were equally reported by participants as the most common: “building rapport in therapeutic relationship,” “enhancing self confidence,” and as a “behavioral reward.” technique . therapist and client engage with therapy animal outside of traditional therapeutic environment; i.e. such as taking therapy animal for walk. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward . i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions technique , “therapist interacting with therapy animal such as having animal perform tricks,” was most commonly intended to “build rapport in the therapeutic relationship.” the second most common intention reported was to “enhance trust within therapeutic environment.” technique . therapist interacts with therapy animal such as having animal perform tricks. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward . i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions results for technique , “therapist encourages client to perform tricks with therapy animal,” indicated the most common therapeutic intention for this technique was to “enhance self confidence”. the second most common intention reported was to “enhance relationship skills.” technique . therapist encourages client to perform tricks with therapy animal. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions a majority of clients indicated technique , “encouraging client to perform commands with therapy animal”, served the purpose of “enhancing self confidence”. the second most frequently reported purpose was to “enhance client‟s social skills”. technique . therapist encourages client to perform commands with therapy animal. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills e. enhancing self confidence f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward . i. enhancing trust within therapeutic environment j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions a majority of the participants reported for technique , “commenting or reflecting on spontaneous client animal interactions”, two most frequent therapeutic purposes, “facilitating insight” and “enhancing client‟s social skills.” technique . therapist comments or reflects on spontaneous client animal interactions. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. many of the participants reported for technique , that when “information about therapy animal‟s family history is shared with client”, the most common purpose was to a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions “build rapport in therapeutic relationship”. the second most commonly reported therapeutic intent was “enhancing trust within therapeutic environment.” technique . information about therapy animal’s family history (breed, species, and so forth) is shared with client. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward . i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. similarly to technique , when “history related to the therapy animal is shared with client”, the most common purpose was to “build rapport in therapeutic relationship”. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions the second most common intent reported was “enhancing trust within therapeutic environment.” technique . history related to therapy animal is shared with client. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. results indicated for technique , when “animal stories and metaphors with animal themes are shared with client”, the most frequent intention was to “facilitate a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions insight”. the second most common attention reported was to “build rapport in therapeutic relationship.” technique . animal stories and metaphors with animal themes are shared with client by therapist. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors g. encouraging sharing of feelings . h. behavioral reward i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. results indicated when “encouraging the client to make up stories involving the therapy animal,” the most common intent was to “encourage sharing of feelings”. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions participants reported “facilitating insight” and “enhancing client‟s social skills” as the second most common intention. technique . therapist encourages the client to make up stories involving the therapy animal. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. the most common intention related to technique , “therapist utilizes client- therapy animal relationship,” was to “encourage sharing of feelings”. the second common intention reported was to “facilitate insight.” a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions technique . therapist utilizes the client-therapy animal relationship, such as: “if this dog were your best friend, what would he know about you that no one else would know?” and/or “tell rusty (therapy dog) how you feel and i will just listen.” therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills d. enhancing relationship skills e. enhancing self confidence f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. participants indicated technique , “encouraging client to recreate/reenact experience with therapy animal”, as the least practiced technique. additionally, the few who did practice this technique indicated its common purpose was to “facilitate insight”. participants reported the second common intent was to “encourage sharing of feelings.” a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions technique . therapist encourages client to recreate/reenact experience where therapy animal plays a specific role. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. results indicated the most common purpose for technique , “therapy animal is present without any directive interventions”, was to “facilitate feelings of being safe in therapeutic environment”, and the second most was to “enhance trust within therapeutic environment”. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions technique . therapy animal is present without any directive interventions. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings h. behavioral reward . i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. a majority of participants indicated, for technique , “therapist creates activities with therapy animal,” the most common purpose was to “enhance client‟s social skills”. the second most common intent was both to “enhance self confidence” and to “model specific behaviors. a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions technique . therapist creates specific/structured activities with therapy animal. therapeutic intentions frequency percentage a. building rapport in therapeutic relationship . b. facilitating insight . c. enhancing client‟s social skills . d. enhancing relationship skills . e. enhancing self confidence . f. modeling specific behaviors . g. encouraging sharing of feelings . h. behavioral reward . i. enhancing trust within therapeutic environment . j. facilitating feelings of being safe in therapeutic environment . k. other . figure . technique therapeutic intentions. nineteen various animal assisted therapy techniques were identified based on information in the literature, adding to the content validity of the instrument. one technique was thrown out due to its unclear wording, thus eighteen techniques were analyzed. the list was also reviewed, examined, and approved by a panel of experts in the field implying face validity. in order to examine internal consistency reliability on the a b c d e f g h i j k n u m b e r o f p a rt ic ip a n ts therapeutic intentions likert scale scores, crohnbach alpha was computed. an alpha of . was calculated for the entire sample (n= ). alpha coefficient values range from to and are calculated to illustrate the reliability of factors from scales or questionnaires (santos, ). in order to determine internal consistency for the therapeutic intentions, which were rated on a different scale, a crohnbach alpha was also calculated indicating an alpha of . . thus, internal consistency for both parts of the survey appear to be high. discussion in the course of the past forty years, the incorporation of therapy animals in the mental health field has increasingly gained much attention. therapy animals within the field of mental health have, sometimes, been referred to as “co-therapists,” suggesting their integral part within the treatment process itself. results of this study indicated that therapy animals are incorporated in the therapeutic process in a variety of ways. results also suggested that participating mental health professionals integrated various animal assisted therapy techniques with specific therapeutic purposes. mental health professionals, located through three animal assisted therapy- related databases, were surveyed regarding their integration of a therapy animal into the therapeutic process. participants were licensed mental health professionals or mental health interns and represented the following disciplines: psychology, counseling, social work, marriage and family therapy, school counseling, and hypnotherapy. assumption . assumption one addressed the incorporation of therapy animals with a variety of techniques which were identified through a comprehensive literature review. results from frequency ratings indicated that professionals incorporated a variety of animal assisted techniques. as stated in some of the literature (mallon, ; chandler, ; fine, ), animal assisted therapy (aat) is considered an adjunct to therapy and can complement the different ways a professional works in therapy. for this group of professionals, when a therapy animal is integrated in the treatment process, participants often integrate a variety of techniques, which also includes the therapy animal. assumption . assumption two results indicated that some animal assisted techniques were integrated more often than others. results indicated seven animal assisted techniques were often or always utilized by a majority of the participants. in addition to frequently utilized techniques, results also revealed techniques that were less frequently incorporated into the therapeutic process. the most common animal assisted therapy technique incorporated by these participants was “reflecting or commenting on a client‟s relationship with a therapy animal.” results also indicated that this technique also served a variety of therapeutic purposes; most participants reported this technique was intended to build rapport in the therapeutic relationship. such results may suggest that incorporating a therapy animal can engage a client further in the therapeutic relationship. chandler ( ) noted, for example, how a client‟s relationship with a therapy animal can enhance the therapeutic relationship with the human therapist; and possibly, during the earlier stages of counseling, they may form bonds with the animal that are stronger than that of the typical therapist-client relationship. these results also illustrate how professionals recognize and actively call attention to the connection that takes place between a client and a therapy animal. another technique which many participants reported practicing often was “encouraging the client to interact with the therapy animal by touching or petting the animal.” some of the therapeutic purposes for integrating this technique were to build rapport in the therapeutic relationship, enhancing the client‟s social skills, enhancing trust within the environment, and facilitating feeling safe in the therapeutic environment. therapy animals also provide clients with a unique opportunity for physical touch during a therapy session. mental health professionals typically do not engage in physical contact with their clients, therefore, therapy animals are able to provide that connection. the ability of clients to have a source of physical contact through interaction with the therapy animal was further noted by some of the authors in the aat literature (pattison, ; dew, ; chandler, ). this source of physical connection is yet another distinctive characteristic of animal assisted therapy. two particular animal assisted techniques related to information about the history of the therapy animal. as such, a majority of the participants reported that these two techniques were also commonly integrated into the therapeutic process. one technique involved information related to the therapy animal‟s family history, such as the breed of the animal, or the history of the species of the animal. the other technique involved the history related to the specific therapy animal. for both of these techniques, the most common therapeutic purpose was to build rapport within the therapeutic relationship. thus, for these participants, integrating the unique aspects of the therapy animal and its past was a means of connecting with clients. one participant, for example, described how sharing the story of rescuing the therapy animal from a shelter often related to child clients who were adopted. results indicated that even though the therapy animal was consciously incorporated by mental health professionals in a variety of directive and structured ways, a therapy animal was also a part of the therapy process without any directive interventions. in other words, the animal‟s presence, alone, intended to provide therapeutic benefits. participants indicated that the most common therapeutic purposes for incorporating a therapy animal without any directive interventions was to enhance trust in the environment and to facilitate feeling safe in the therapeutic environment. as indicated by the previous literature reviewed (trivedi & perl, ; beck & katcher, ; chandler, ; fine, ) ;), the therapy animals‟ existence within the therapeutic environment can ultimately create a sense of safety, warmth, and acceptance for clients. for a majority of the participants, the company of a therapy animal had therapeutic value specifically related to the therapeutic environment. results also indicated that spontaneous moments were common occurrences when incorporating a therapy animal in practice, and when they did occur, the participants often commented or reflected on these spontaneous happenings. a therapist may not always be able to predict or direct some of the behaviors that a therapy animal engages in during a session, but the participants in this study suggested that some of these unintentional events can lead to therapeutic discussions. one particular participant reported the “decision-making” behavior of the therapy cat; when the cat chose to leave a session, the therapist “could not make it stay”. this finding seems to support some of the literature which implied that some of the therapeutic value of aat is the unplanned, which often reflects the natural character of the therapy animal. participants also reported sharing animal stories or metaphors with animal themes were also a common practice, with over half reporting often or always integrating this technique. findings in the literature (reichert, ; chandler ; fine; ) suggested that including either the therapy animal or animal themes included in stories or metaphors can serve to facilitate a variety of therapeutic purposes. for these participants, “facilitating insight” was the most common intent when incorporating this technique. thus, when a therapy animal is present in the therapeutic process, these participants naturally include them in such therapeutic dialogues. although the participants indicated incorporating a variety of techniques, a couple of techniques were least commonly integrated among these participants. when asked if therapists encouraged a client to recreate/reenact an experience where a therapy animal played a specific role, the majority indicated either seldom or never. such results imply that for these participants, this technique was not commonly incorporated with their clients. due to differences in mental health professionals‟ therapeutic approaches, this technique may not fit within their therapeutic framework. perhaps, some clients may spontaneously engage in role playing with a therapy animal, however, most of these participants were less likely to direct this technique. previous literature reviewed also described role playing, specifically with children and a therapy animal, as a way to gain insight and facilitate imaginative relationships (nebbe, ; mallon, ). those participants that reported encouraging a client to role play with the therapy animal also indicated that the most common intent was to facilitate a client‟s insights. assumption . one of the most frequent therapeutic purposes that the participants reported for a variety of techniques was to build rapport within the therapeutic relationship. for a majority of these participants, building rapport was related to the following: therapist reflecting or commenting on the client‟s relationship with a therapy animal, the therapist encouraging the client to interact with a therapy animal by touching or petting the therapy animal, sharing information about the therapy animal‟s family history (breed, species, and so forth) with the client, as well as sharing history related to the therapy animal with the client. chandler ( ) further emphasized the importance of building rapport in therapy for successful counseling. results for these participants implied that incorporating a therapy animal can be a means to facilitate building rapport within the therapeutic relationship. results also indicated, for these participants, building rapport can be approached in different ways. results for these participants ultimately suggested that the integration of a therapy animal in various ways provides more opportunities with which to build rapport with their clients, thus enhancing the therapeutic relationship itself. consistently, the least frequent therapeutic intention was the purpose of a behavioral reward. participants did not incorporate a majority of animal assisted techniques for the intent of a behavioral principal. instead, participants appeared to incorporate the therapy animal as an extension of the treatment, in contrast to a condition of improvement. in other words, spending time with the therapy animal was a natural inclusion to the therapy process. this finding seems consistent with the findings in the literature reviewed which supported the integration of a therapy animal as a part of the therapeutic process, compared to its conditional method. only one literary work cited incorporating a therapy animal as a behavioral reward (kraft, n. d.). other findings a majority of participants reported that therapy animals were not incorporated with every client. those participants described some of the various reasons for not including a therapy animal, such as allergies, appropriateness of client, or client‟s preference of not working with a therapy animal. such responses highlight the unique responsibility animal assisted therapists have of assessing the welfare of both the therapy animal and the client. some clients noted the preference of not having a therapy animal present during the first session in order to better assess the client‟s appropriateness in working with a therapy animal. chandler ( ), in particular, noted the importance of screening a client before the start of aat in order to protect both the client and the therapy animal. she also included a client screening form as a tool to incorporate in practice. participants also discussed some of the reasons clients may not be appropriate to work with a therapy animal, such as fear of animals, history of animal cruelty, and possible aggression level of client. allergies were the most common reason a therapy animal was not included with clients. thus, animal assisted therapists have a responsibility to take into account the health and welfare of clients, therapy animals, and others who may come into contact with a therapy animal in their practices. an additional factor in caring for the welfare of the therapy animal is the amount of time that the therapy animal is included in their practices. some participants in this group indicated not including the therapy animal with every client due to the incompatible working hours which could fatigue a therapy animal. for instance, some participants owned more than one therapy animal and rotated the days in which certain therapy animals came to work. another participant reported bringing a therapy animal only on certain days. thus, variations in the practice of animal assisted therapy may represent different facets, such as the therapy animal‟s health and well-being. participants were also asked open-ended questions related to their animal assisted therapy practices. even though these responses were not analyzed and coded, some of the responses warranted attention in order to illustrate the participants‟ perceptions of aat and that of their practices. participants were asked to describe some the traits that made the therapy animal therapeutically valuable. participants often referred to the therapy animal as calm. one participant, in particular, highlighted the opportunity for tactile touch that the therapy animal provided in their practice: my therapy dog offers a physical comfort to clients that i, as a responsible therapist, cannot provide. she is able to provide tactile sensory stimulus to clients who are otherwise internally preoccupied (i.e., schizophrenic clients). she also serves as a „protector‟ of the client's information, as she „keeps secrets, and is a guardian breed (it works as a nice metaphor). another participant described the work that her therapy animal can do just by being present: “facilitate patient reducing defenses…one session with an animal can equal sessions without an animal, especially with resistant patients”. other respondents described the way in which a therapy animal can greet their clients at the door and welcome them into the therapeutic environment. another participant described her therapy dog‟s valuable teaching lesson: sometimes, all that pongo brings to a session is calm and presense [sic]. the value of just his loyal and dependable presense is enough. he is drawn to grief---not in an overtly demonstrative way, but in a very subtle and gentle way. he may sit at their feet or lay on the sofa so that they can reach over and rub his head and shoulders while they talk. sometimes, the rhythm of his sleeping breathing takes fear, anxiety, or agitation from the room. he teaches everyone who walks in the value of being present. he will teach the kiddos and adults alike how everyone and every dog is different and we all show love and affection in different ways. it helps everyone to remember that everyone brings something different to the table and it is what we do with that that makes the difference. he teaches almost everyone in the most subtle way imaginable---that they are lovable. participants were also asked to describe their relationship with the therapy animal which may contribute to the therapeutic value of aat. one participant described the way in which relating stories of her therapy animal served as a way to share with a young client: i can often use her issues/struggles as object lessons for clients. in the case of an adolescent client who was a school phobic, i related to her that my dog was also a school phobic and had a hard time making friends with other dogs. this intervention served as a way to both earn the girl's trust and to illustrate that she was not alone in her anxiety about school. since we've started working with her, she has not missed a single day of school! another individual commented on her specific relationship with her therapy animal: my client learns about how i relate to my animal and gets some insight into who i am and how i move through the world. they get a feel of how i can draw strong and compassionate boundaries and still honor the relationship that i share with my dog (a good life lesson); our relationship shows how respectful and loving relationships work and how important trust is in all relationships. it allows the client to see my human nature and helps to create a comfortable, safe, and relaxed environment. participants were also asked to describe some of the specific/structured activities that they incorporated into therapy sessions with animals. one respondent described such an activity that was practiced with a child client: therapy dog is the teacher today. it is his job to teach you several lessons with his behavior only. he will not instruct you or tell you what to do. you can ask him questions, you can groom him, or take him on a walk if you like, but remember that all the while he is teaching you things today, and you have to be mindful to get those lessons so we can talk about them at the end of the session. another respondent illustrated yet another activity: almost all of my youth are working on teaching marley a trick or a sequence of tricks - after the youth has picked the trick or sequence of tricks, each session is structured around that trick and the therapeutic goal - i like to have some sort of structure for each day, but also allow sessions to be fluid in some cases. results further indicated that spontaneous moments occurred often in therapy, which also facilitated the therapeutic discussions. respondents were asked to describe any of those spontaneous moments. some of their responses are illustrated as follows: “adolescent blew up in family session and dog retreated to crate in fear-patient was able to see how her behaviors affect others and her relationships.” finally, another participant stated, “cat began purring as client petted him. child admitted, tearfully, that being with data was the best thing at school.” implications the field of animal assisted therapy continues to evolve in its research and education. much can be learned from those that practice in the field. the mental health professionals who participated in this study revealed some of the specific ways in which a therapy animal is integrated into the therapy process as well as for specific therapeutic purposes thus, lending to the notion that therapy animals play a distinct role in the therapeutic process when integrated into treatment. from the mental health professionals‟ perspectives, a therapy animal can enhance the therapeutic process. the field of animal assisted therapy has evolved in a variety of fields, even beyond the mental health field. results from this study also revealed that aat is incorporated in a variety of settings, and in creative ways. participants in this study primarily practiced aat in a private practice setting, but many other working environments were noted, such as schools, community agencies, hospitals, and barns. practitioners wanting to incorporate aat into their practices may meet with some resistance, however. one participant reported how it took some time for the agency to allow aat as an appropriate modality. perhaps, the results from this study may educate how aat is incorporated into the therapeutic process. thus, this would support professionals in the field who want to incorporate aat into their practices. strength of the study this study was one of the first examinations of mental health professionals‟ incorporation of specific animal assisted techniques within the therapeutic process, as well as uncovering the various therapeutic intentions related to each technique. results revealed a variety of methods in which participants facilitated interactions between the therapist, client, and therapy animal. for these participants, the common theme that emerged from the results was the intent to build rapport in the therapeutic relationship. this intention was reported as the most common therapeutic purpose with a variety of techniques. for these participants a therapy animals‟ presence in the therapeutic process offered a way to enhance the therapeutic relationship. the relationship between the client and therapy animal was also often reflected on by most of the participants, as indicated by frequency scores for technique one. fine ( ) described a therapy animal as being an “extension to a therapist” (p. ). the therapy animal can provide opportunities to further build rapport. this idea seemed evident for these participants. limitations one of the primary limitations of this study was the lack of resources for the target population. although three resources were utilized in order to gather potential participants, finding appropriate participants was a challenge. delta society‟s database identified only mental health professionals, yet a number of those who responded did not qualify for the study because they did not practice aat as a mental health professional, which suggested that delta society‟s database contained some misinformation. the center for animal assisted therapy at the university of north texas is still in the process of creating an area database of professionals in the field and was only able to identify mental health professionals who utilized aat in the surrounding community. the last resource, the yahoo aat professional group, although they had over members with varied professions, such as occupational therapists, nurses, and teachers, only four members volunteered to participate in the survey. other attempts were made to contact more aat mental health professionals, such as contacting other agencies which registered therapy animals, but they did not have databases which identified their members‟ professions. the lack of organized databases and resources which identify animal assisted therapists also reflects the infancy of the field itself. a second limitation occurred due to the mixed methods of providing the questionnaire through an online distribution and a paper survey. the online survey contained a slightly different format for the second part of the survey in regard to therapeutic intentions. participants who completed the online survey were able to select as many therapeutic intentions as they wanted; on the other hand, the paper survey had only five spaces provided for the therapeutic intentions. participants who completed the paper survey may have wanted to choose more but may have perceived the five spaces as their limit. this difference may have impacted the amount of therapeutic intentions, slightly. many participants who completed the paper survey, wrote additional responses in the space below, and were not limited by the five designated spaces. a further limitation related to the survey method involved the inability to gather more information from the participants. because the survey instrument had more direct questions, the participants‟ responses varied and could not be clarified. as such, perhaps, an interview would provide more detail about their practices of aat. nardi ( ) suggested that face-to-face or telephone interviews may help with clarifying information from respondents, as well as “unanticipated” answers may uncover new findings. because the field of aat contains variability in the way that it is practiced, an open-ended interview may further reveal the diverse methods of how aat is performed. although the goal of this study was to uncover the behavior practices of mental health professionals who incorporated aat, this design presented another limitation. one of the aspects of the design, which may have presented a limitation, was the use of vague quantifiers with the likert scale. a critical component of the survey design inquires about the frequency of the incorporation of specific animal assisted interventions. groves, fowler, couper, lepkowski,singer, and tourangeau ( ) referred to these items as frequency behavior questions. such questions may reflect inaccurate estimates, especially when matched with vague quantifiers. vague quantifiers refer to response scales which incorporate terms, such as seldom, often, and/or frequent (groves et al.). such expressions are interpreted differently for each individual. wanke ( ) suggested that in order to help respondents understand the intent of the question the researcher should provide an anchor, so as to relate the question itself. due to the variations in the ways in which mental health professionals conduct therapy, utilizing specific anchors was difficult. nardi ( ) also addressed one of the disadvantages of a survey design is the discrepancy among what respondents report they do, and what they actually do. because this design asked the participants to recall and report on what they actually did, caution should be taken on the accuracy of the results. future research one of the biggest struggles limiting this study was locating potential participants, yet there is a need to learn more from those who practice animal assisted therapy. future studies may address this dilemma by surveying members of the major mental health associations, such as the american psychological association, american counseling association, american school counselor association, national association of social workers, and the american association for marriage and family therapy, in order to locate those who practice with a therapy animal. creating a database of professionals who practice animal assisted therapy may also offer more opportunities for research and education on the behaviors of mental health professionals in the field. in order to expand on or further explore the ways that therapy animals act as “co- therapists” or adjuncts in the therapeutic process, future studies may incorporate direct observations or videotaped recordings of animal assisted therapy sessions. nardi ( ), in particular, highlighted the benefits of qualitative observations and field methods, noting that behavior could more accurately be observed in context, as well as that of nonverbal behaviors. this would further explore the nonverbal interactions between clients and therapy animals, as well as some of those spontaneous moments that the mental health professionals in this study reported frequently occurring. this study explored the behaviors of mental health professionals who incorporate aat into treatment. some of their responses indicated some of their perceptions regarding the value of aat, as seen in some of their open-ended comments. perhaps, an additional study which would increase knowledge regarding the practice of aat within the mental health field would focus on clients‟ perceptions and attitudes regarding working with a therapy animal. analysis could look at any discrepancies between the practitioners‟ beliefs about aat and the clients‟ reactions to aat. results from this sample indicated that certain animal assisted techniques corresponded with certain therapeutic purposes. in order to expand on these implications, further research may measure if certain techniques actually resulted in their intended therapeutic purpose. due to some of the inconclusive results from the previous studies reviewed regarding the effectiveness of animal assisted therapy, future research may compare some of these specific techniques with the incorporation of a therapy animal, and without the presence of a therapy animal. although many questions still exist in the field of animal assisted therapy, more studies are revealing the important ways that a therapy animal is incorporated into the healing process in the mental health arena. this study shed light on some of the key ways mental health professionals integrated a therapy animal within the therapeutic process. it also revealed, for these practitioners, the purposes for incorporating specific animal assisted techniques in one‟s therapy sessions. ultimately, while the animal assisted therapy field continues to develop, an ongoing, more in-depth understanding of its practice will also uncover its potential critical influence in the field of mental health. appendix a consent form and mental health profession animal assisted therapy technique survey my name is dana o‟callaghan and i am conducting a research study about animal assisted therapy interventions incorporated by mental health professionals. you have been one of the animal assisted therapists selected to participate in this study. if you agree to take part in this study, you will be asked to complete a questionnaire about your integration of animal assisted interventions within your therapeutic practice. it will take approximately - minutes to complete. participation in this study may benefit the field of animal assisted therapy and the mental health field by providing information on the practices of animal assisted interventions. your responses may help us learn about how therapy animals are integrated into the therapeutic process. participation in this study is completely voluntary. you have the right to skip any question you choose not to answer. there are no foreseeable risks involved in this study. all research records will be kept confidential by the principal investigator. no individual responses will be disclosed to anyone because all data will be reported on a group basis. if you have any questions about this study please contact dana o‟callaghan at or my faculty advisor, dr. cynthia chandler, department of counseling and higher education, university of north texas, - - . when you complete the questionnaire, you will also be asked if you would like to be included in a drawing for a $ . petsmart gift card. one name will be randomly selected. the winner of the drawing will be mailed within two weeks of the survey deadline. this research project has been reviewed and approved by the unt institutional review board. please contact the unt irb at - - with any questions regarding your rights as a research subject. your signature below indicates that you have read or have had read to you all of the above and that you confirm all of the following:  you understand the possible benefits and the potential risks and/or discomforts of the study.  you understand that you do not have to take part in this study, and your refusal to participate or your decision to withdraw will involve no penalty or loss of rights or benefits. the study personnel may choose to stop your participation at any time.  you understand why the study is being conducted and how it will be performed.  you understand your rights as a research participant and you voluntarily consent to participate in this study.  you may keep the additional enclosed copy of this form for your records. _______________________________ printed name of participant ________________________________ __________ signature of participant date ________________________________ __________ signature of principal investigator or designee date . what is your date of birth? ______month______day______year . what is your gender? ______ male ______ female . what is your ethnicity? ______ caucasian ______ african american ______ hispanic ______ asian ______ native american ______ bi-racial ______ multi-racial ______ other . what is your highest degree in the mental health field? ______ some college education ______ college degree ______ master‟s degree ______ doctorate degree . what is your occupation? ___________________________________________________________ . what is your professional mental health license or certification? ______ licensed marriage and family therapist ______ licensed/certified professional counselor ______ licensed clinical social worker ______ licensed clinical or counseling psychologist ______ licensed school psychologist ______ licensed/certified school counselor ______ other (please describe)____________________ . what is your primary mental health guiding theory for client conceptualization? ______ adlerian ______ jungian ______ person centered/child centered (rogerian) ______ reality therapy ______ rational emotive behavior therapy ______ cognitive/behavioral therapy ______ family systems ______ existential ______ humanistic ______ gestalt ______ developmental ______ transpersonal ______ feminist ______ eclectic ______ none ______ other (please describe)_____________________ . how many years have you practiced as a mental health professional?____ . are you the primary caregiver for the therapy animal? ______yes ______no . please list the therapy animals you have or have had that assisted you in your mental health work? species/breed name(s)/age(s) number of years practiced as therapy animal? certified (yes/no) list types of certification (delta, tdi, etc.) ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ . in what setting(s) do/did you utilize animal assisted therapy? please rate from most to least ( =most) the primary setting where you most often practice aat. ______ private practice ______ hospital ______ elementary school campus ______ middle school campus ______ senior high school campus ______ community agency ______ residential treatment setting ______ college campus ______ detention center ______ prison ______ crisis/disaster setting (please describe)____________________ ______ other (please describe)____________________ . how many years have you incorporated aat into your mental health practice? ____ . is the therapy animal(s) present with every client you see? ______ yes ______ no if no, please indicate some of the reasons why therapy animal is not included?______________________________________________________________ ______________________________________________________________________ . for the following chart please place a checkmark to the left of each therapeutic modality you practice. then, for each treatment modality you practice, indicate the percentage of time you incorporate animal assisted therapy in either individual (i) or group (g) format. children adolescent adult elderly i g i g i g i g modality % % % % % % % % talk therapy play therapy music therapy biofeedback therapy sandtray therapy expressive arts therapy drama therapy activity therapy adventure therapy . how often do you typically practice aat as a professional? ____once a week ______once a month ____twice a week ______twice a month ____three times a week ______three times a month ____four times a week ______varies ____five times a week . is the therapy animal(s) introduced to the client(s) in the first session? ______ yes ______ no if no, when and how is the therapy animal incorporated into the therapy process? ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ . if the therapy animal(s) is present in a session, is it typically present during the entire session? ______ yes ______ no ______ if no, what percentage of the time is the therapy animal typically present in the session? . please tell me some of the traits the therapy animal(s) has that makes the therapy animal(s) therapeutically valuable. ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ . please describe aspects of your relationship with the therapy animal that contributes to the therapeutic value of aat. __________________________________________________________________ __________________________________________________________________ __________________________________________________________________ scale: never = , seldom = , often = , always = using the scale provided above, please rate how often you, the therapist, utilize with clients each of the animal assisted therapy interactions listed below. please indicate in space on the left of the numbered item. then, for the following list of therapeutic intentions below please indicate, for each animal assisted intervention you utilize, the therapeutic intention you relate to each intervention. therapeutic intentions a. building rapport in the therapeutic relationship g. facilitating insight b. enhancing client‟s social skills h. as a behavioral reward c. enhancing relationship skills i. enhancing trust within d. enhancing self confidence therapeutic environment e. modeling specific behaviors j. facilitating feeling of being f. encouraging sharing of feelings safe in therapeutic environment k. other ____ . therapist reflects or comments on client‟s relationship with therapy animal. intention ____ ____ ____ ____ ____ ____ . therapist encourages client to interact with therapy animal by touching or petting therapy animal. intntion ____ ____ ____ ____ ____ ____ . therapist encourages client to play with therapy animal during session. intention ____ ____ ____ ____ ____ ____ . therapist encourages client to tell therapy animal about client‟s distress or concerns. intention ____ ____ ____ ____ ____ ____ . therapist and client engage with therapy animal outside of traditional therapeutic environment; i.e. such as taking therapy animal for walk. intention ____ ____ ____ ____ ____ ____ . therapist interacts with therapy animal such by having animal perform tricks. intention ____ ____ ____ ____ ____ ____ . therapist encourages client to perform tricks with therapy animal. intention ____ ____ ____ ____ ____ ____ . therapist encourages client to perform commands with therapy animal. intention ____ ____ ____ ____ ____ ____ . therapist comments or reflects on spontaneous client animal interactions. intention ____ ____ ____ ____ ____ ____ . information about therapy animal‟s family history (breed, species, and so forth) is shared with client. intention ____ ____ ____ ____ ____ ____ . history related to therapy animal is shared with client. intention ____ ____ ____ ____ ____ ____ . animal stories and metaphors with animal themes are shared with client by therapist. intention ____ ____ ____ ____ ____ ____ . therapist encourages the client to make up stories involving the therapy animal. intention ____ ____ ____ ____ ____ ____ . therapist utilizes the client-therapy animal relationship, such as: “if this dog were your best friend, what would he know about you that no one else would know?” and/or “tell rusty (therapy dog) how you feel and i will just listen.” intention ____ ____ ____ ____ ____ ____ . therapist encourages client to recreate/reenact experience where therapy animal plays a specific role. intention ____ ____ ____ ____ ____ ____ . spending time with therapy animal is a reward for progress in therapeutic treatment. intention ____ ____ ____ ____ ____ ____ . therapy animal is present without any directive interventions. intention ____ ____ ____ ____ ____ ____ . therapist creates specific/structured activities with therapy animal. intention ____ ____ ____ ____ ____ please describe please describe one activity and one therapeutic purpose________________________________________________________ ______________________________________________________________ ______________________________________________________________ _____ .therapy animal engages with client in spontaneous moments that facilitate therapeutic discussion. please describe moments.________________________________________ ______________________________________________________________ ______________________________________________________________ appendix b participants incorporating aat by various treatment modailities %- % %- % %- % %- % children individual group adolescent individual group adult individual group elderly individual group frequency of participants including aat in sandtray therapy %- % %- % %- % %- % children individual group adolescent individual group adult individual group elderly individual group frequency of participants including aat in drama therapy %- % %- % %- % %- % children individual group adolescent individual group adult individual group elderly individual group frequency of participants including aat in adventure therapy %- % %- % %- % %- % children individual group adolescent individual group adult individual group elderly individual group appendix c frequency of participants inclusion of aat techniques technique never seldom often always . therapist reflects or comments on client‟s relationship with therapy animal. . therapist encourages client to interact with therapy animal by touching or petting therapy animal . therapist encourages client to play with therapy animal during session . therapist encourages client to tell therapy animal about client‟s distress or concerns. . therapist and client engage with therapy animal outside of traditional therapeutic environment; i.e. such as taking therapy animal for walk. . therapist interacts with therapy animal such as having animal perform tricks. . therapist encourages client to perform tricks with therapy animal. . therapist encourages client to perform commands with therapy animal. . therapist comments or reflects on spontaneous client animal interactions. . information about therapy animal‟s family history (breed, species, and so forth) is shared with client. . history related to therapy animal is shared with client. . animal stories and metaphors with animal themes are shared with client by therapist. . therapist encourages the client to make up stories involving the therapy animal. . therapist utilizes the client-therapy animal relationship, such as: “if this dog were your best friend, what would he know about you that no one else would know?” and/or “tell rusty (therapy dog) how you feel and i will just listen.” . therapist encourages client to recreate/ re-enact experience where therapy animal plays a specific role. . therapy animal is present without any directive interventions. . therapist creates specific/structured activities with therapy animal. . therapy animal engages with client in spontaneous moments that facilitate therapeutic discussion. references american pet products manufacturers‟ association ( ). - national pet owners survey. retrieved december , , from http://www.appma.org/press_industrytrends.asp barak, y., savorai, o., mavashev, s., & beni, a. 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( ). behavioral therapy. in r. j. corsini and d. wedding (eds.), current psychotherapies ( th ed. pp. - ). belmont, ca: brooks/cole. http://mentalhealth.samhsa.gov/resources/dictionary.aspx 	acknowledgements 	list of tables 	list of figures 	 . introduction 	statement of the problem 	review of related literature 	animal assisted therapy studies and therapeutic implications 	animal assisted therapy studies and implications 	variations of animal assisted therapy programs and related studies 	equine assisted therapy research 	aat related literature and therapeutic implications 	justification of animal assisted technique questions 	purpose of the study 	 . methods and procedures 	research questions 	research assumptions 	definition of terms 	method 	participants 	instrument 	data collection 	statistical analysis 	 . results and discussion 	results 	demographics related to the therapy animal 	assumption 	assumption 	assumption 	discussion 	other findings 	implications 	strength of the study 	limitations 	future research 	appendices 	a: consent form and mental health profession animal assisted therapy technique survey 	b: participants incorporating aat by various treatment modailities 	c: frequency of participants inclusion of aat techniques 	references change and integration in senior health care systems: master’s thesis change and integration in senior health care systems: the case of sault ste. marie jennifer mckenzie m.sc in health systems telfer school of management university of ottawa ©jennifer mckenzie, ottawa, canada, ii supervisory committee dr. craig kuziemsky, telfer school of management, university of ottawa dr. samia chreim telfer school of management, university of ottawa iii abstract this thesis organizes information that will assist a community in the selection or construction of a context sensitive integrated senior healthcare system model. the senior healthcare system within sault ste. marie, ontario is used as a case study. institutional ethnography is used to collect data guided by a change management model adapted from the literature. data sources were non-participant observations, key informant interviews, focus groups, and texts. institutional ethnographic local and high level analyses methods were used to analyze this data. results identified many more restraining than driving forces for integration within sault ste. marie’s senior healthcare system. study findings indicate that macro level activities are perpetuating micro level obstacles to integration. these results can be used to identify where improvements need to be made at the macro level in order for successful change to occur at the micro level. iv table of contents section title page number supervisory committee ii abstract iii table of contents iv list of figures vii list of tables viii acknowledgements ix . introduction . problem statement . study objectives and questions . methodology . thesis organization . literature review . continuum of care . continuity issues in the continuum of care . senior healthcare integration . integrated senior healthcare system models . analysis of existing literature . summary of gaps and problems in literature . using change management concepts to address integration problems . methods . case study . institutional ethnography . data collection . . participants . . ethics approval . . non-participant observation . . interviews . . focus groups . . . administrator focus group . . . front line service worker focus group . . texts . data analysis . . first layer of analysis . . second layer of analysis- drawing the fault line . trustworthiness/credibility . results . stage one: system gaps and desired end state . . local level system gap results . . . lack of health human resources . . . funding gaps v . . . . lack of administrative funding to fulfill reporting requirements . . . . lack of preventative senior services . . . gaps in system coordination . . . . incompatible assessment tools . . . . difficulties with system shift from institutional to community- based care . . local level desired end state . . . vision for an integrated senior healthcare system in sault ste. marie . . . goals to achieve the vision for an integrated senior healthcare system in sault ste. marie . stage two: situational and key stakeholder analyses . . local level system diversity: inventory & visual maps of organizations and services . . local level enablers to integration . . . existing inter-organizational and cross sector relationships/ projects . . . . system planning and improvement relationships/projects . . . . developing a coordinated single point of access . . . . addressing gaps in geriatric mental health resources . . . . addressing gaps in affordable housing with assisted living supports . . . . assisting seniors in obtaining the appropriate level of care . . . . increasing stakeholder’s awareness and education . . local obstacles to integration . . . organizational silos . . . cross-sector/provider philosophical treatment differences . . high level obstacles to integration-drawing the ‘fault line’ . . . mohltc/ne lhin funding models . . . mohltc and ne lhin policy/legislation . . . . long term care homes act ( ) . . . . assisted living services for high risk seniors policy ( ) . . . . different cross sector legislation . . . mohltc and ne lhin politically driven decisions . discussion . review of study objectives . force field analysis . moving forward- an action plan for the sault ste. marie senior health care system . . stage three part one: broaden support . . . establish project as a priority and change leader selection . . . communicate vision and build change collation . . stage three part two: system redesign . . . create an operational plan and identify required resources . . implement, reinforce, and sustain the change vi . the macro-micro chasm . solutions to the macro-micro chasm . general approach for organizing information for senior healthcare system model construction/selection . conclusion . research implications . stakeholder implications . policy implications . patients, families, community implications . limitations . future areas of research . reflection of contributions references appendix a: ethics approval letters appendix b: letters of information and consent to participate forms appendix c: non-participant observation field note collection tool appendix d: semi-structured interview protocol appendix e: inventory of sault ste. marie senior healthcare system programs and services appendix f: senior’s health knowledge network- communities of practice vii list of figures figure page number figure : change management framework for senior healthcare model selection figure : summary of results figure : summary of gap- lack of health human resources figure : summary of funding gaps figure : summary of gaps in system coordination figure : draft structure of sault ste. marie senior healthcare system umbrella organization/board figure : sault ste. marie senior continuum of care figure : summary of existing inter-organizational and cross sector relationships/ projects figure : organizational silos as an obstacle to integration figure : cross-sector/professional philosophical treatment differences as an obstacle to integration figure : overview of the current state of the sault ste. marie senior healthcare system figure : force field analysis figure : how macro level activities impede micro level integration capability figure : general approach for organizing information for senior healthcare system model construction/selection viii list of tables table page number table : review of the system of integrated care for older persons (sipa), quebec table : review of the program of research to integrate services for the maintenance of autonomy (prisma), quebec table : review of the program of all-inclusive care for the elderly (pace), usa table : review of the social health maintenance organization (s/hmo), usa table : coding results of cross interview and non-participant observation analyses table : sault ste. marie senior health care system action plan ix acknowledgements i would like to thank my dedicated thesis supervisors, craig kuziemsky and samia chreim for their ongoing support and assistance over the past three years. you have taught me valuable skills that i will carry forward in my work in healthcare. i would like to thank the study participants who dedicated their time and knowledge to this thesis. it is clear from your passion that you care deeply about the seniors within your community, a behaviour that is both inspiring and motivating. i would also like to thank my husband for your continued support throughout this process. you have kept me going in countless ways through your understanding, your actions, and your patience. i would also like to thank my mother and father for their willingness to help in any way that they could, you have always been there for me and i can’t than you enough. . introduction this chapter provides an overview of the background and motivation for this thesis. it will present a problem statement followed by the study objectives and methodology, as well as a description of how this thesis is organized. . problem statement the demand for healthcare services to meet the needs of seniors within canada is growing as the aging population continues to increase (hollander et al, ). to address this demand, numerous services have been developed, however no one organization is accountable for elderly care causing fragmentation in service delivery (bergman et al, ). this fragmentation has caused: “…continuity-related problems that compromise both service accessibility and efficiency of healthcare needs” (hebert et al, ). the lack of continuity among senior healthcare organizations and service providers has not gone unnoticed as several integrated senior healthcare system models have been developed to identify how to create connections among these entities. examples of such models include: the ‘system of integrated care for older persons’ (sipa), the ‘program of research to integrate services for the maintenance of autonomy’ (prisma), the ‘program of all-inclusive care for the elderly’ (pace), and the ‘social health maintenance organization’ (shmo). although these models have been somewhat successful in increasing continuity among senior healthcare services, common implementation problems have limited their effectiveness including: lack of participation from organizations and service providers; difficulty building inter-organizational relationships; and significant financial and human resources required for model implementation (bergman et al, ; beland et al, ; hebert et al, ; hollander et al ; hebert et all, ; kodner, et al, ; reuben et al, ). the literature that reviews the above models does not provide insight into the causes of the implementation problems, nor does it explain the processes that were used to select the models for the specific communities that they were implemented within (bergman et al, ; beland et al, ; hebert et al, ; hollander et al ; hebert et all, ; kodner, et al, ; reuben et al, ). this lack of information creates two issues: ) in order for the above models to be more effective, the root causes of the implementation problems need to be addressed; and ) it is difficult to determine how to transfer the above models to other communities because there is no selection or implementation process to follow. these issues act as barriers to communities such as sault ste. marie, ontario that have identified the need for an integrated senior healthcare system model to address gaps in continuity of care (sault ste. marie & area health care committee (ssmahcc), ; clarke; ). . study objectives and questions change management literature indicates that the above implementation problems are common in change initiatives that take place within the healthcare setting, and suggests that they align with the two major issues that change management processes are meant to prevent including ‘stakeholder resistance’ and ‘environmental inappropriateness’ (kotter, , golden, , balogun and hailey, ). therefore, to address these problems and provide a process that will assist with integrated senior healthcare system model selection/construction, this thesis has the following objectives: ) use change management concepts as a lens to depict the current state of a specific community that is in need of an integrated senior healthcare system model. ) format/refine the information gathered from the first objective so it is useful for stakeholders in selecting or constructing a model that meets their specific needs. to achieve the above objectives, this thesis asks the following questions: ) what are some of the system gaps within communities that are in need of an integrated senior healthcare system model? ) what vision and goals for an integrated senior healthcare system are suggested by stakeholders within these communities? ) what are the enablers of and obstacles to integration? how can the enablers be leveraged and the obstacle’s be overcome to achieve are more integrated senior healthcare system? through the above objectives and questions, this study will assist a community that is in need of an integrated senior healthcare system model in understanding local system gaps, resources, as well as enablers and obstacles to integration. this information will act as a stepping stone towards the selection or construction of a context sensitive model, as stakeholders will have a clear awareness of the resources and behaviours that can be leveraged, as well as the barriers that need to be addressed in order for the change to be successful. . methodology to achieve the above objectives, this study uses dorothy smith’s institutional ethnography ( ) as a method of inquiry to depict of the current state of a senior healthcare system that is in need of an integrated model from the perspective of local administrators and front line service workers (devault and mccoy, ). through this methodology i situate myself as the researcher in the environment under study in order to provide additional insight into how the system is organized by taking the ‘standpoint’ of study participants (devault and mccoy, ). institutional ethnographic studies are ‘for the people’ as they assist in helping those who work within a specific institutional environment (e.g. healthcare system) to determine where change can occur to improve their everyday lives (smith, ). therefore, this method of inquiry provides momentum for the change towards senior healthcare system integration as the stakeholders who will be asked or require to change are involved in `diagnostic` activities that serve to encourage change readiness (schein, ; armenakis and harris, ). using an ie approach, data is collected through non-participant observations, key informant interviews, and focus groups. this data is first analyzed at the local level to form an understanding of how the environment of interest is organized based on the collective experiences of study participants. this is accomplished through within and cross analysis of data sources by coding for emergent themes guided by change management concepts. the data is then further analyzed by comparing the local level analysis to relevant texts to form an understanding of how the environment of interest is organized at the macro level. this analysis resulted in the following:  identification of sault ste. marie senior healthcare system gaps; establishment of a vision and goals for an integrated sault ste. marie senior healthcare system; depiction of diversity within the sault ste. marie senior continuum of care; and identification of enablers and obstacles to achieving the established integration path.  identification of high level obstacles to integration through the application of ie `fault line` analysis methods.  presentation of a force field analysis which identifies the driving and restraining forces for integration within the sault ste. marie senior healthcare system.  discussion of the macro-micro chasm that currently exists within the sault ste. marie senior healthcare system.  development of a general approach that can be adapted by other communities to assist in selecting a context sensitive integrated senior healthcare system model. . thesis organization this thesis begins with a literature review that describes existing integrated senior healthcare system models and the common problems that they encountered during implementation. it will then make a case for the use of change management processes to assist in addressing these problems. the study design and methodology are described, followed by the presentation and discussion of the results. finally, the study will conclude with an overview of its contributions to the literature, limitations, and recommendations for areas of future research. . literature review to describe the background of this research study, the following literature review will provide an overview of the continuum of care; continuity issues in the continuum of care; healthcare system integration; existing prominent integrated senior healthcare system models, analysis of these models; gaps and problems found in the literature; and change management processes that can be used to address these gaps and problems. . continuum of care because it is the objective of this study to depict the current state of stakeholders and the continuum of care within a specific community that is in need of senior healthcare system integration , it is necessary to provide a description of what is meant by the ‘continuum of care’. the ‘continuum of care’ is a holistic view of the senior healthcare system including different levels of care, types of services, and organizations within a given region. hollander and prince ( ) provide a general example of the continuum of care which divides the system into four levels: primary (community based services), secondary (residential services), tertiary and quaternary (acute care services). it is important to note because no two environments are the same (balogun and hailey, ), the continuum of care may change based on geographical region. for example, the continuum of care in ottawa will look much different than the continuum of care in sault ste. marie as each location will have access to different levels of care and services. in each geographical region, these services could be provided by numerous organizations that are not necessarily connected with each other. this creates continuity of care issues as bergman et al ( ) explain: “since each institution is a distinct entity with its own funding mechanism, budget, jurisdiction and criteria for patient selection, services are not coordinated across patient needs”. . continuity issues in the continuum of care the lack of continuity among senior healthcare services becomes problematic as senior’s needs may fall within or across multiple levels and organizations along the continuum of care. an example of this problem is the alternative level of care (alc) issues facing many canadian communities (walker et al, ). alc patients are those who no longer require the acute care services that hospitals are meant to provide, yet they remain in hospital beds waiting for the appropriate level of care to become available within the community (cancer care ontario, ). part of the alc problem can be attributed to the lack of continuity among senior healthcare services as one of the reasons why seniors become alc patients in the first place is because they use the emergency department as a ‘one stop shop’ for all of their care needs, rather than trying to navigate their way through various organizations that provide senior care services in the community (aminzadeh and dalziel, ). furthermore, alc issues indicate that service providers also find it difficult to navigate the senior healthcare system, as seniors are often designated alc because hospital care providers lack knowledge and confidence in services within the community, and therefore only discharge their patients to institutionalized care settings (ne lhin-home first implementation guide and tool kit, ). this necessity to discharge seniors to institutionalized care has caused the wait lists for these facilities to become over people long in certain communities (first interview, mgt pilot project, ). this backlog forces alc patients to remain in hospital beds for prolonged periods of time which contributes to the deterioration of their conditions and causes them to require higher levels of care than they did when they first were designated alc (gillick et at, ). therefore, the alc issue decreases the quality of care that both seniors and the overall population receives as it forces seniors to seek care in unsuitable settings and cripples the hospitals’ ability to provide care to acute patients (starr-hemburrow et al, ). because of such problems, most healthcare financial resources are directed towards higher, more costly institutional levels of senior care such as long term care facilities and hospitals (hollander et al, ). a study conducted by veterans affairs canada (miller et al, ) examined the potential of home and supportive housing services as alternatives to these higher levels of care within halifax, ottawa, victoria, and toronto. the findings suggest that: “…continued funding of preventative home care may be providing savings to provincial healthcare systems by reducing the rate of deterioration of the health of veterans, thereby reducing the use and costs of hospital services and long term care facilities” (hollander et al, ). in addition, study participants in community settings reported a higher level of satisfaction with the care that they were receiving than institutionalized clients (miller et al, ). although these studies provide evidence that shifting resources from higher to lower levels of care could increase the quality of senior care while decreasing healthcare system costs, hollander et al ( ) caution that these resource shifts will only be effective if they are made within an integrated senior healthcare system that provides funding for service providers and organizations spanning the continuum of care. . senior healthcare integration the need for integrated senior healthcare systems has received much attention and support from canadian and international researchers (expert panel on alternative level of care, ; bergman et al, ; beland et al, ; hebert et el, ; st. joseph’s health care london, ; rubenstein et al, ; starr-hemburrow et al, ; kodner et al, ; hollander et al, ; hollander and prince, ; hollander et al, ; costa and hirdes, ; macadam, ; macadam, ). leutz ( ) reinforces this perspective by explaining that: “integration could address cross-system care problems, including poor coordination of services and benefits, cost shifting, and frustration for users in accessing services”. based on this literature, using integration as a solution to the need for senior healthcare system continuity appears to be a favourable idea, however the question then becomes, ‘what is integration?’ a systematic review by the canadian policy research network that evaluates integrated senior healthcare system frameworks indicates that the term ‘integration’ takes on many meanings (macadam, ), and provides examples of the various definitions through three concepts including ‘type’, ‘level’, and ‘form’. within this review, ‘type’ of integration is explained using leutz’s ( ) description of linkage, coordination, and full integration:  linkage allows individuals with mild to moderate health care needs to be cared for in systems that serve the whole population without requiring any special arrangements.  coordination requires that explicit structures be put in place to coordinate care across acute and other health care sectors. while coordination is a more structured form of integration than linkage, it still operates through separate structures of current systems.  full integration creates new programs or entities where resources from multiple systems are pooled (macadam, ). ‘level’ of integration is explained through a description of system integration, intra and inter-organizational integration, and clinical integration:  system integration includes activities such as strategic planning, financing, and purchasing system, program eligibility and service coverage, within a geographical area or across a country or province.  intra organizational integration refers to the coordination and management of activities among the entities (departments, staff, etc.) within the same organization or service provider.  inter organizational integration refers to the coordination and management of activities among various organizations and service providers that span across the continuum of care.  clinical integration concerns the direct care and support provided to older people by their direct care givers (macadam, ). the ‘form’ of integrated care is referred to as vertical and horizontal integration:  vertical integration refers to the delivery of care across service areas within a single organizational structure.  horizontal integration refers to improved coordination of care across settings (macadam, ). because there are numerous meanings of integration, macadam ( ) explains that the definition of integration used should be dependent upon the end goal of the change. therefore, because it is the end goal of this study to highlight the context and circumstances of stakeholders and the overall continuum of care within a specific environment, the term ‘integration’ will refer to formal or informal activities and relationships among organizations and/or service providers that span across the senior continuum of care as a whole. . integrated senior healthcare system models as a result of the need for senior healthcare system integration, several integrated senior healthcare system models have been developed. the systematic review of integrated senior healthcare frameworks by the canadian policy research network has identified that there are hundreds of published articles that deal with the integration of care for specific diseases such as diabetes or cancer, as well as specific sectors such as primary care, secondary care, and tertiary care (macadam, ). because the objective of this study is to illuminate the context and circumstances of stakeholders and the overall senior continuum of care within a specific environment, these types of models will not be reviewed. rather, the following review concentrates on studies that evaluate the most prominent senior healthcare system models that create connections among all levels, organizations, services, and stakeholders across the senior continuum of care as whole (table , table , table , and table ). where possible, this review will explain the model objective and design, how it was developed, the results of the implementation, and finally the obstacles that each of these models faced during development and implementation. table : review of the system of integrated care for older persons (sipa), quebec model one key features: objectives/ description method of model development system of integrated care for older persons (sipa), quebec sources: bergman et al, ; beland et al, . model objectives:  a system based on the delivery of all senior services across the continuum of care (health, social, acute, long term).  one sipa organization would be responsible for the entire population of frail elderly in a given region.  public financing for health and social services is integrated; new sipa organization is responsible for all costs.  includes elderly who are waiting for ltc institution placement, as well as those who need assistance to remain in the community. model description:  single entry point (based on specific eligibility criteria)  geriatric assessment and management through the use of interdisciplinary protocols.  case managers (authorized to intervene in decision making, responsible for inter- disciplinary team, and inter-organizational coordination of patient care, responsible for clients regardless of location within the system).  care provided by an inter-disciplinary team.  primary care physicians play key role in multi-disciplinary team.  inter-organizational coordination (across continuum of care). who and where?  developed by the mcgill university (quebec) research group on integrated services for the frail elderly. how?  multi-disciplinary group consulted for model development including managers, practitioners, and academics.  all stakeholders in the quebec health and social services network were consulted at each stage in model development.  international experts also consulted. identified development & implementation obstacles development:  situational analysis of the environments where the model was implemented is not mentioned in the literature.  although stakeholders were involved in model development, the extent of their involvement and buy in to the model is not clear (this is evident when looking at the implementation obstacles). implementation:  sipa did not perform as well as expected.  recruiting elders to be admitted to the sipa program for this trial was difficult as this process required the cooperation of already overworked clsc staff.  incorporating the sipa model into the work processes of the various clinicians was a difficult process (no time to adapt to model after training).  case managers faced difficultly in coordinating with hospital care units because of high staff turnover, poor information transmission, and lack of coordination with hospital physicians.  case managers faced difficultly coordinating with primary care physicians.  incentives for physicians to participate in sipa were inadequate.  hiring team members was continuous, many necessary positions remained vacant, union issues were present (i.e. nurses strike) that affected staff and team stability. result of implementation implementation and evaluation:  sipa demonstration project in several hospitals and centres locaux de services communautaires (clscs) in the montreal region.  implementation led by the montreal regional health board, the quebec ministry of health and social services, the agence de developement de reseaux locaux de services de santé et des services sociaux de montreal, and the solidage group.  regional model implementation monitoring committee formed with representatives from the clscs, hospitals, nursing homes, and rehabilitation centres.  quasi-experimental design with an experimental (sipa demonstration project) and control group (services offered by local clscs). results  success in substituting institutional based services for community based services.  experimental group had less than half the hospital admissions than the control group.  reduced the number of hospital waits for ltc home placement by half.  sipa reduced institutional costs by $ , for those living independently in their homes with chronic illnesses as compared to the control group.  sipa reduced short term hospitalization costs for those living with activities of daily living disabilities by $ , as compared to the control group. table : review of the program of research to integrate services for the maintenance of autonomy (prisma), quebec model key features: objectives/ description method of model development program of research to integrate services for the maintenance of autonomy (prisma), quebec sources: hebert et al, ; hollander et al ; hebert et all, . model objectives:  coordinates all organizations and services across the continuum of care (public, private, voluntary) for seniors in a given area.  every organization keeps its own structure but agrees to participate in an umbrella system and to adapt its operations and resources to agreed-upon requirements.  no new infrastructure or financing mechanisms  embedded within the current healthcare system.  includes elderly who are waiting for ltc institution placement, as well as those who need assistance to remain in the community. model description:  inter-organizational coordination at every level (governance, management, clinical).  single point of entry (accessed through telephone or written referral)  case manager (authorized to intervene in all institutions or services, central to program).  individualized service plans (developed by multidisciplinary teams, led by case manager)  single assessment instrument (evaluates clients’ needs and resources).  computerized clinical chart (allows all care providers across organizations access to client information). who and where?  prisma group which is a canadian partnership between two research teams (research centre on aging in sherbrooke and laval university geriatric research team in quebec city).  health organizations in the province of quebec: ministry of health and social services, five regional health and social services agencies and the sherbrooke geriatric university institute. how?  developed based on the premise that integrated senior healthcare across the continuum would improve the quality of care and costs.  the method of model development and stakeholder involvement is not mentioned in the literature. identified development and implementation obstacles development:  there is a lack of information concerning how the model was developed and what level of stakeholder participation was involved.  there is a lack of information concerning why the specific model was chosen for the sites that it was implemented within. implementation:  there is a lack of information on the effectiveness of prisma, however hebert et al ( ) acknowledge that because this model is embedded within the current healthcare system, a significant change in current work process is needed, as well as the need for coordination among organizations. result of implementation evaluation and implementation ( )  bois-francs pilot project in two clsc territories in the victoriaville region, quebec.  quasi-experimental design with an experimental group (received prisma services) and a control group (received regular clsc services).  followed over a three year period after implementation. results ( )  fewer people in experimental group experienced functional decline.  desire to be institutionalized less in experimental group.  caregivers’ burden was less in experimental group.  experimental and control group use of hospital was the same.  the control group had a higher chance of going back to the hospital after discharge and a higher chance of being institutionalized. evaluation & implementation ( )  a more recent study by herbert et al that tests the effectiveness of prisma in three new sites in still being conducted, the base line data does not show conclusive results at this time. table : review of the program of all-inclusive care for the elderly (pace), usa model key features: objectives/ description method of model development program of all-inclusive care for the elderly (pace), usa source: kodner, et al, ; reuben et al, . model objectives  integrated system of care for the elderly that coordinates services across the continuum of care through and around an adult day health centre.  includes elderly who are waiting for ltc institution placement, as well as those who need assistance to remain in the community. model design  day health centre is the primary care setting for most services.  geriatric inter-disciplinary approach to team care and assessment (primary care providers, nurses, personal care assistants, social workers, rehabilitation therapists, nutritionists, etc.).  automated data system used across all sites.  care plan developed through data system by all team members’ bridges internal and external resources. who and where?  in san francisco’s community leaders received funding from the administration on aging and the state of california, department of health services to initiate on-lok model that eventually developed into the pace model.  now a well-established model in the united states. funding:  federal- medicare/medicaid. how?  developed based on the premise that integrated senior healthcare across the continuum would improve the quality of care and costs.  each pace site develops a panel of specialist consultants to obtain support for the model from the community and healthcare professionals. result of implementation identified implementation obstacles evaluation and implementation:  according to kodner et al four major studies have evaluated the pace model which has been implemented by various organizations in numerous cities throughout the united states.  numerous methods of have been used to evaluate the effectiveness of the pace model. the results from kodner et al provides a synthesis of these studies as presented below. results:  effective in integrating financing and delivery of services, as well as effective clinical integration.  enrolment in pace decreased hospital use (admissions and days spent in hospital) by % compared to a control group.  enrolment in pace decreased admission to ltc homes ( % less than control group).  pace participants used more community based services than control group ( % vs. %).  pace participants are in good health and report that their quality of life has increased. development  there is a lack of information concerning how the model was developed and what level of stakeholder participation was involved.  there is a lack of information concerning why the specific model was chosen for the sites that it was implemented within. implementation  pace did not perform as well as expected.  takes time and financial commitment (roughly to years and . million dollars).  difficultly with recruitment of specialized staff and physicians.  requires a change in culture (i.e. staff must be trained in new model, patients and families must be educated). table : review of the social health maintenance organization (s/hmo), usa model key features: objectives/ description method of model development social health maintenance organization (s/hmo), usa source: kodner et al, . model objectives:  to branch together social and acute senior healthcare services.  connects services and organizations throughout the continuum of care in various sites.  includes elderly who are waiting for ltc institution placement, as well as those who need assistance to remain in the community. model design:  individual assessments performed (include patient and family consultation).  care management multi-disciplinary team (nurses, social workers, primary care physician, other healthcare workers).  clinical management tools used to develop comprehensive care plan. who & where?  four shmo sites: seniors plus, minneapolis, minnesota, medicare plus ii, portland, oregon, elderplan, new york city, and scan health plan, long beach, california. funding:  federal- medicare/medicaid. how?  developed based on the premise that integrated senior healthcare across the continuum would improve the quality of care and costs.  each site given the flexibility to implement the shmo model in their own manner (not stated how or why models were adjusted). result of implementation identified development and implementation obstacles evaluation and implementation:  according to kodner et al many different studies have been conducted to evaluate this model the findings of which are discussed below. results:  integration at the financing, benefit, and administrative levels but not at the clinical level.  s/hmo’s associated with an increase in hospitalization and ltc home admissions.  - % of s/hmo patients expressed satisfaction (same as regular hmo patients).  family members are greatly satisfied with moral support and coordination of care that they did not receive through other programs. development:  there is a lack of information concerning how the model was developed and what level of stakeholder participation was involved.  there is a lack of information concerning why the specific model was chosen for the sites that it was implemented within. implementation:  shmo did not meet expectations.  difficultly in developing new delivery systems.  difficultly in establishing effective provider relationships.  newness of the program was not appealing to many seniors and thus it was difficult to get them to enrol in the program. . analysis of existing literature each of the above integrated senior healthcare system models have been somewhat successful in substituting higher levels of care for lower levels of care, decreasing elderly hospital admissions and lengths of stay, increasing access to senior healthcare services, and reducing overall costs to the healthcare system (bergman et al, ; beland et al, ; hebert et al, ; hollander et al ; hebert et all, ; kodner, et al, ; reuben et al, ). however, the literature also indicates that the models did not perform as well as expected for the following five reasons: . lack of participation from organizations and service providers, . difficulty building inter-organizational relationships, . significant financial resources required for model implementation, . human resource constraints, and; . difficulty integrating the models into current work processes (bergman et al, ; beland et al, ; hebert et al, ; hollander et al ; hebert et all, ; kodner, et al, ; reuben et al, ). in addition to the above problems, each of the models claims to have the ability to be transferred to other communities that are in need of senior healthcare system integration, yet there is a lack of information that describes how to do this (bergman et al, ; beland et al, ; hebert et al, ; hollander et al ; hebert et all, ; kodner, et al, ; reuben et al, ). furthermore, in order to ensure that the models are effective within other communities, the existing implementation problems need to be addressed prior to transfer. to do this, an in-depth understanding of why the above five problems occurred is necessary. for example, why did the models encounter financial and human resource constraints? why couldn’t existing resources support them? why didn’t stakeholders participate in the models? how were these models selected for the communities that they were implemented within? when reviewing the literature for answers to these questions, explanations were not provided (bergman et al, ; beland et al, ; hebert et al, ; hollander et al ; hebert et all, ; kodner, et al, ; reuben et al, ). this lack of information is an issue because the selection process is essential to the overall success of change initiatives, as stakeholder behaviours and resources need to be able to adequately support the them (balogun and hailey, ; armenakis and harris, ). based on the common issues that existing models encountered, it appears as though the significance of the change selection process was not taken into consideration as the issues stem from the following two problems: ) problem one: stakeholder resistance to change stakeholder resistance to existing integrated senior healthcare system models can be seen through the lack of stakeholder participation in the models and difficulty building inter- organizational relationships (bergman et al, ; beland et al, ; hebert et al, ; hollander et al ; hebert et all, ; kodner, et al, ; reuben et al, ). change management literature suggests that one reason why resistance occurs is because of the lack of stakeholder participation in the change selection process (golden, ). armenakis and harris ( ) explain that without stakeholder participation, ‘genuine’ buy-in cannot be accomplished as stakeholders may not understand why the change is occurring. this lack of understanding may cause change recipients to feel a loss of control over: “...their influence, their surroundings, their source of pride, and how they have grown accustomed to living and working” (jick et al, ). these negative reactions to change can have a significant impact on the success of new initiatives, and thus change recipients’ understanding and acceptance of the change is extremely important (jick et al, ). armenakis et al ( ) suggest that decreasing stakeholders’ negative reactions to change can be accomplished by increasing their ‘readiness for change’ which could lead to more effective change efforts. readiness for change is defined as: “…the extent to which an individual or individuals are cognitively and emotionally inclined to accept, embrace, and adopt a particular plan to purposefully alter the status quo” (holt et al, ). ) problem two: inappropriateness of change for specific environment the environmental inappropriateness of existing integrated senior healthcare system models can be seen through the following problems: significant financial resources required for model implementation, human resource constraints, and difficultly integrating the models into current work processes. according to balogun and hailey ( ), these problems may have been caused by the lack of evaluation of the intended change environments prior to model selection as the problems indicate that the environments could not support the model designs (bergman et al, ; beland et al, ; hebert et al, ; hollander et al ; hebert et all, ; kodner, et al, ; reuben et al, ). change management literature outside healthcare supports balogun and hailey’s ( ) theory by indicating that proper ‘organizational diagnosis’ is required to understand the specific needs of the stakeholders and environment of interest: “…in order to minimize the likelihood of making a mistake in implementing an intervention that is not appropriate” (armenakis and harris, ). . summary of gaps and problems in literature based on the above review of literature the following gaps and problems have been identified:  gaps: lack of information that describes how to implement existing models in other communities that are in need of senior healthcare system integration; lack of information that describes why integrated senior healthcare system models were chosen for the specific communities that they were implemented within.  problems: stakeholder resistance towards existing integrated senior healthcare system models; environmental inappropriateness of existing integrated senior healthcare system models. . using change management concepts to address integration problems based on the above gaps and problems, it would be beneficial to establish an integrated senior healthcare system model selection/construction approach that assists in addressing the issues that existing models have faced. therefore, because it is the goal of change management process to address issues of stakeholder resistance and environmental inappropriateness (kotter, , golden, , balogun and hailey, ), this section suggests using these concepts to guide the selection or construction of integrated senior healthcare system models for communities that are in need of this change. through this approach, stakeholder resistance can be addressed by using concepts within the first two stages of golden’s ( ) healthcare change management framework to involve stakeholders in determining the change design. armenakis and harris ( ) explain that involving participants: “…in the diagnostic process actually begins to sensitize them to the possibility of an impending organizational change, and can serve to encourage change readiness”. further to this, adding concepts from balogun and hailey’s ( ) ‘change kaleidoscope’ to golden’s ( ) framework can assist in addressing the second problem that existing models faced of ‘environmental inappropriateness’. these additional concepts identify the specific aspects of the intended change environment that should be examined when determining the change design. figure depicts these concepts in a framework that has been adapted from the literature (golden, ; balogun and hailey, ). figure : adapted change management framework the concepts within figure are described further below. stakeholder involvement: the overarching theme of stakeholder involvement within the adapted change management framework is being applied because studies by cochrane et al ( ) and ducharme et al ( ) showed that involving stakeholders in selecting or constructing the change design increased the overall success of the initiative as stakeholders were able to identify a design that matched their needs. furthermore, as holt et al (page , ) explain: “…those who participate often have greater access to change-related information than those who do not. this access to information makes it possible for participants to better understand the justification for change and its ultimate objectives”. therefore, stakeholder participation in gathering the information in the adapted change management framework is essential to building stakeholder understanding and acceptance of the change towards an integrated senior healthcare system model. when considering this type of change the stakeholders may include: government bodies (federal, provincial, municipal), administrators and all levels of management, front line workers, specific professional groups, patients, families, and the community. with so many stakeholders affected by and involved in the change towards an integrated senior healthcare system model, the question now becomes ‘which stakeholders should participate in selecting the change design?’ stakeholder involvement certain change management literature suggests that a ‘top-down’ or management-led approach to change is favourable (kotter, ), whereas other change management literature suggests that a ‘bottom-up’ or employee-led approach to change is more appropriate (armenakis and harris, ). however, because the change towards an integrated senior healthcare system model involves numerous stakeholders that have varying views of what the healthcare system looks like, as well as limited ability to lead the change alone, a collaborative or ‘distributed leadership’ approach to change seems appropriate (chreim et al, ). this approach: “…attends to change visioning and implementation as a collective enterprise, involving a variety of actors (individuals and/or groups) sharing in change agency roles” (chreim et al, ). therefore, when taking a collaborative approach to change, the stakeholders involved in constructing the change design should include representatives from different stakeholder entities. the overarching theme of ‘stakeholder involvement’ can be applied in stage one and two of the adapted change management framework as described below. stage one: determine desired end state the first stage within the adapted change management framework (figure ) ‘determine desired end state’ focuses on gathering information from stakeholders concerning their views of system gaps, visions for a future integrated senior healthcare system model, as well as goals that would assist in achieving this vision. the purpose of doing this is to show that there is a gap between the current state of the senior healthcare system and the desired end state which signifies the need for change and focuses: “…the attention of change leaders and those who will be asked (or required) to change” (golden, ). stage two: situational and key stakeholder analyses stage two of the adapted framework (figure ) ‘situational and key stakeholder analyses’ focuses on gathering information from stakeholders using concepts from balogun and hailey’s ( ) change kaleidoscope to develop a detailed description of the stakeholders and the continuum of care within the intended change environment. these concepts include:  diversity: the diversity within a senior healthcare system is explored by depicting the organizations, service providers, and services that currently exist within the continuum of care. understanding the diversity of a change environment is vital to assisting stakeholders in selecting or constructing a change design that includes existing resources. this is important to ensure that the design does not add another layer of confusion into the system by duplicating what already exists. furthermore, selecting/constructing a design that takes advantage of existing resources will assist in the success of the change by ensuring that the design can be supported by the current system, rather than requiring new resources that the community may not have access to.  capability: determining stakeholder’s capability of managing the change of an integrated senior healthcare system model is explored by identifying the current activities that are taking place to enable integration.  readiness for change: determining readiness for change occurs on two levels, the first is identifying affected stakeholder’s awareness for the need for change, the second is identifying the level of commitment that affected stakeholders are willing to put towards the change. this information is identified through stakeholders’ vision for an integrated senior healthcare system and experiences with obstacles to integration. the purpose of gathering information concerning diversity, capability, and readiness for change is to form an in-depth understanding of the existing resources and behaviours present within the intended change environment from the perspective of stakeholders. this level of understanding is important as it will assist change leaders in selecting or constructing integrated senior healthcare system model that is appropriate for their community (balogun and hailey, ). the following chapters will describe how this thesis applied these change management concepts to assist a community that is in need of senior healthcare system integration. . methods the subsequent chapter describes how the thesis questions and objectives were explored through the use of a case study combined with institutional ethnography as a method of inquiry. these data collection and analysis approaches were used to gather and explore information about the concepts within the adapted change management framework (figure ). . case study to answer the questions and achieve the objectives of this research project, the senior healthcare system within sault ste. marie, ontario has been used as a case study. this specific region has been chosen because the senior healthcare system within this city of , has been under stress for some time due to the ongoing alc issues facing the community’s acute care centre. on march th , sault ste. marie’s acute care centre moved staff and most of their in-patients to a brand new single site facility. prior to this date, the facility was continuously operating over capacity as % of their beds were filled with alc patients who were year of age and older (ne lhin-media release, ). some of the causes for this alc issue include the lack of capacity and resources for senior care within the community, as well as the lack of continuity among acute and community services (first interview, mgt pilot project, ). in moving to a new facility, the acute care centre recognized that they could not bring their alc issues along with them, and thus in their new hospital improvement plan identified that they would maintain an alc rate of % in the new hospital site (sault area hospital- hospital improvement plan, ). to achieve this objective, transitional alc beds were left behind at the old acute care centre. although this provided some relief, the acute care centre is continuing to provide services to non-acute alc patients. therefore, these beds are only a temporary solution, and the alc crisis in sault ste. marie continues to be a problem. the north east local health integrated network (ne lhin) and many of the leaders of senior healthcare organizations in sault ste. marie recognized that the alc issues at the community’s acute care centre needed to be addressed at both the community and acute care level, and thus formed the sault ste. marie & area ne lhin alc solutions group (alc solutions group). the main priorities for this group include:  developing a community plan to move alc patients from hospital beds to beds available in the community.  strengthening community support/assisted living with a focus on a home-first strategy to enhance home care services and improve existing processes so that seniors receive the care they need faster and more effectively (ne lhin- alc solutions group terms of reference, ). although these plans are in place, and some actions have been taken towards increasing the amount of in-home care and personal support services within community, the members of the alc solutions group continued to identify the need for an integrated senior healthcare system model that creates continuity among senior care services across the continuum (ssmahcc, ). a report titled annual district service plan for long-term care community services by the algoma, cochrane, manitoulin, sudbury (acms) district health council explains that: “in all districts, key stakeholders continue to acknowledge the need for continued improvements in interagency communication and service coordination to provide a continuum of service to clients/patients” ( ). the following sections will describe how i have undertaken research that organizes information to assist the community of sault ste. marie in understanding system gaps, diversity, enablers, and obstacles of integration. this information can be used as a stepping stone for choosing or constructing a context sensitive integrated senior healthcare system model. . institutional ethnography to achieve the first study objective, a change management framework that has been adapted from the literature (figure ) was used as a lens to determine the specific information that was gathered from study participants and to organize this information in a way that would be useful for their planning purposes. this data has been collected and analyzed using dorothy smith’s institutional ethnography (ie) as a method of inquiry ( ). a qualitative ie approach has been chosen because it reflects the overarching theme within the adapted change management framework of ‘stakeholder involvement’, as well as the overall study goal of depicting the current state of a senior healthcare system that is in need of an integrated model to provide stakeholders with information that will assist them in selecting/constructing a design that corresponds to their needs. ie studies mirror these goals because they aim to discover how and why an institutional environment is organized based on the collective experiences of those working within it. this is done to extend their knowledge to assist in determining where change can occur to improve working conditions (devault and mccoy, ). some of the other studies that have used ie to explore the organization of a specific group of people’s experiences within the healthcare system include: mykhalovskiy and mccoy ( ), sinding ( ), and mccoy, ( ). ie studies have two underlying assumptions, the first being that ‘social happening’ occurs in the activities of people which are coordinated: “...on a large scale, as this occurs in and across multiple sites” (devault and mccoy, ). dorothy smith explains that these: “...social relations coordinating across time and distance are present but largely unseen within the everyday/every night worlds of people’s experiences” ( ). to increase participants’ awareness of their interconnected activities, ie studies provide a platform for them to discuss and analyze the organization of the system that they work within during the journey of the research. this method of inquiry can be compared to ‘participatory action research’ which is described as: “… promoting critical consciousness where through cyclical stages of dialogue participants attain a greater understanding of their situation, which in turn may result in political or major social change” (mullett and fletcher, ). scott ( ) explains that these two methods of inquiry share important goals such as: “…a particular interest in making sure the standpoint of those about whom the research is conducted is at the centre of the study” (scott, ). however she also explains that they differ because: “…institutional ethnography recognizes that scholarly researchers bring something methodologically useful to research... -leadership of that sort interferes with the control exercised by participants in classical participatory action research” (scott, ). therefore, ie is chosen as the method of inquiry for this study because it roots the research in the experiences of study participants, but also allows me to apply methodological approaches such as drawing the ‘fault line’ which may not have been suggested by study participants. the second underlying assumption that ie studies have is that many of the coordinated activities of study participants are mediated by texts such as policy and promotional material which are produced and circulated by ‘ruling relations’ (i.e. government bodies) (devault and mccoy, ). one of the most important aspects within an ie study is the content analysis of these texts which is accomplished by reviewing and comparing them to the experiences expressed by study participants in the data collected through interviews, focus groups, and observations. (devault and mccoy, ). the purpose of these comparisons is to analyze how the environment under study is organized at a ‘higher level’ by ruling relations. this is accomplished by finding disagreements between the experiences of the participants and the ideological expressions of them by ruling relations in the texts that they produce (devault and mccoy, ). these disagreements are defined by ie researchers as ‘fault lines’. ‘for example, the results of this study showed that front line service workers believe that the quality of care that they are providing is decreasing because their time is being spent on ministry of health and long term care (mohltc) reporting, rather than spending time with patients. however, mohltc media releases state that the quality of healthcare is increasing because of the added accountability requirements. this example shows that there is a distinct disagreement between what the front line service workers are experiencing, and what the mohltc is portraying to the public. these ‘fault lines’ are important to illuminate because they demonstrate the true impact of government decisions on patient care by identifying how they are actually impacting care and service delivery at the micro level. the identification of these root causes may assist in addressing the actual problem, rather than fixing the surface problem by attempting to increase awareness between the macro and micro levels. the following sections will go deeper into the description of ie and how it has been used to collect and analyze data within this study. . data collection the following section describes the study participants, as well as the ie data collection methods that have been used within this research project. . . participants an ie study: “...begins in the actualities of those who live their everyday lives within the environment of interest and builds accounts of their concerns and experiences which organize the direction of the researcher’s investigation” (smith, ). this method of developing an area of research interest is in keeping with this study as the focus grew out of my own experiences as the former coordinator for the sault ste. marie and area health care committee (ssmahcc). during my time as the coordinator for this group, the members continued to identify the need for an integrated senior healthcare system model to address the problem of service fragmentation within sault ste. marie’s senior healthcare system. in order to focus on this need, as well as the alc issues within sault ste. marie, another group was formed called the ‘sault ste. marie ne lhin alc solutions group (alc solutions group). this group is comprised of administrative representatives from organizations that deliver care to seniors within sault ste. marie (ne lhin media release, ). therefore, because the identification of the need for an integrated senior healthcare system model in sault ste. marie has been the driver for this research project, the members of the alc solutions group are the study’s primary participants. these participants are in line with a collaborative approach to change as they are intended to be representative of the various stakeholder entities within the sault ste. marie senior healthcare system. nevertheless, because the alc solutions group is primarily comprised of organizational leadership, their perspective of the sault ste. marie senior healthcare system may be different than other stakeholder groups. to address this issue, this study also consulted a group of front line service worker representatives from various sault ste. marie senior healthcare organizations. further information about the role of these participants within this study is described in the following sections. . . ethics approval to ensure that this study was conducted in an ethical manner, ethics approval was obtained from the university of ottawa human research ethics committee, the sault area hospital and group health centre research ethics board, and the north east community health ethics network (see appendix a for copies of approval letters). consent to participate was obtained from study participants for each method of data collection. this was accomplished by sending each individual participant a ‘letter of information’ (appendix b) to determine their interest in participating in the study. once interest was established, participants were then provided with ‘consent to participate’ forms (appendix b) which they signed and gave back to me prior to the commencement of each data collection event. . . non-participant observation within many ie studies non-participant observation in the research site is a key method of inquiry that occurs throughout the duration of the data collection process. it allows the researcher to position themselves within the environment under study by taking the ‘standpoint’ of the study participants. non-participant observation means that the researcher maintains the role of the observer and listener. they do not provide their own input during the activities that are observed, rather they remain silent and record the information that is within the realm of their study (creswell, ). to apply this approach i observed meetings with the members of the alc solutions group, and meeting with members of this group over a period of months. during each of these meetings i took detailed field notes of the information pertaining to the concepts within the adapted change management framework (figure ) (creswell, ). see appendix c for a copy of the non- participant observation field note collection tool that was used. each meeting lasted approximately hours, resulting in a total of pages of field notes. this data was analyzed as described in the ‘data analysis’ section of this chapter. . . interviews ie interviewing: “…is typically organized around the idea of work, defined broadly, or “generously” (smith ). whether it is the paid work of an organizational position- (…), the point of interest is the informant’s activity, as it reveals and points towards the interconnected activities of others” (devault and mccoy, ). to apply this approach, over a period of months, semi-structured qualitative key informant interviews were conducted with administrators of organizations that provide care to seniors in sault ste. marie. out of these interviews, were with members of the alc solutions group who were chosen through purposeful sampling based on access which was gained through my past employment with the ssmahcc (miles & huberman, ; creswell, ). these interviewees were recruited by emailing the ‘key informant interview letter of information’ (appendix b) to each individual member of the alc solutions group. interviews were then scheduled with the members who decided to participate. the remaining interview was conducted with an administrator of an organization that provides care to seniors within sault ste. marie, and was recruited through a snowball sampling method based on recommendations from a number of the other interviewees (miles & huberman, ). two of the interviews took place via teleconference, and the remaining eight interviews took place at the participant’s place of work. the interview process focused on gathering information about the concepts within the adapted change management framework (figure ) through a semi-structured interview protocol (appendix d) (patton, ). this protocol included questions to address the concepts in the first stage of the framework ‘determine desired end state’. example questions for each concept are provided below: ) establishing system gaps: “based on your experiences, what are some of the major gaps in accordance to continuity of services within sault ste. marie’s senior healthcare system?” ) determining a vision: “how would you like to see the sault ste. marie senior healthcare system change?” ) goals to achieve vision: “what steps to you think should be taken to achieve the changes that you suggested in the previous question?” coming to understand the interviewee’s individual experiences in accordance to the above questions is an important step that assisted in gaining an understanding of the participant’s views towards the change of an integrated senior healthcare system model. questions concerning the second stage ‘situational and key stakeholder analysis’ were asked to gain an understanding of the context and circumstances of the specific organization that the interviewee is the administrator of, as well as their view of the overall sault ste. marie senior healthcare system. the following are examples of these types of questions: ) diversity: the diversity within the sault ste. marie senior healthcare system was illuminated by asking questions that were geared to the organization where the interviewee is the administrator. this was done by obtaining a list of their services prior to the interview, either through their website site or through the interviewee themselves. an example of this type of question is: “what types of services do you provide within your organization?” ) capability: to understand what people or bodies of people have the ability to the manage change of an integrated senior healthcare system model, ‘capability’ questions focused identifying on enablers of integration within the sault ste. marie senior healthcare system. an example of this type of question is: “what activities are currently happening within sault ste. marie to assist in creating connections among senior healthcare service providers and organizations?” ) readiness for change: to assess readiness for change towards an integrated senior healthcare system model within sault ste. marie, questions concerning the participant’s perception of the need for change and obstacles to integration were asked. examples of these types of questions include: “do you believe that your (patients, clients, customers) would benefit from integrating the services that your organization offers and other services in the community?’ and ‘based on your experiences, what are some of the obstacles of integration within sault ste. marie’s senior health care system?’ to get at the root of the experiences of the interviewees in relation to the above concepts, additional ‘probing’ questions were asked throughout the interview process (devault and mccoy, ). saturation was achieved during the interview with the th and final key informant as no new information arose (creswell, ). rather, this interviewee provided additional examples of their own experiences that contributed to the themes identified by previous interviews and the non-participant observations. the interviews were audio recorded and lasted between and hours to get through the interview protocol, as well as any additional information that the interviewee decided to provide. along with the assistance of a hired transcriptionist, the audio recordings were transcribed verbatim resulting in a total of pages of written transcript. this data was then analyzed as described in the ‘data analysis’ section of this chapter. . . focus groups focus groups are another common method of data collection used by ie researchers and are the design aspect in ie studies that create a platform for discussion among participants: “through informants’ stories and descriptions, the research begins to identify some of the trans local relations, discourses, and institutional work processes that are shaping the informants’ everyday work” (devault and mccoy, ). to apply this method of data collection, after the individual key informant interviews and non-participant observations were complete, two focus groups were held with sault ste. marie senior healthcare system administrations and front line services workers as described in the following sections. . . . administrator focus group the first focus group was held with members of the alc solutions group who provided administrative representation from different levels of care, as well as representation from an overall sault ste. marie senior healthcare system perspective. (the number of participants is a reflection of the poor timing of the focus group as it took place in july when most of the alc solutions group members were unable to attend due to vacation or previous commitments. those who were unable to attend continued to express their interest in the study by requesting to remain in contact with me to receive progress updates. based these behaviours, as well as the agreement among the administrative and front line service worker focus groups in relation to the need for change, there is no indication that the number of participants reflected resistance of any kind). these participants were recruited through a purposeful sampling method (creswell, ; miles & huberman, ) by emailing the individual members of the alc solutions group the ‘administrator focus group letter of information’ (appendix b). those who decided to participate were then emailed the location of the focus group along with a copy of the data that would be reviewed during this session. the purpose of this focus group was to create a platform for discussion among participants around the analyzed results from the semi-structured qualitative key informant interviews and non-participant observations. these results were presented to the participants in a powerpoint format that mirrored the adapted change management framework sequence. during this presentation, ‘member checks’ were conducted by asking the participants to fill in any missing information that was left by the interviews (linclon and guba, ). to do this, participants were asked to collectively review, revise and add to the identified system gaps, enablers to integration, and obstacles to integration. furthermore, participants were asked to collectively develop a vision and goals for an integrated senior healthcare system in sault ste. marie by revising and adding to the themes identified in the interviews and non- participant observations. through these activities, participants were able to discuss the data and share information about their experiences within the sault ste. marie senior healthcare system. for example, information was shared by one participant about specific policy that restricts the transition of clients from their organization to other sectors. this sharing of information increased the awareness of existing cross-sector circumstances among focus group participants. furthermore, by bringing stakeholders together in a collective format to discuss the change towards an integrated senior healthcare system, this focus group began to address some of the obstacles that existing integrated senior healthcare system models faced such as ‘lack of participation from organizations and service providers’ and ‘difficulty building inter-organizational relationships’. the process of breaking down these barriers was initiated as cross-sector focus group participants began to collectively agree on a vision and goals for the change towards an integrated senior healthcare system in sault ste. marie (as presented in chapter . ). in addition to the above activities, participants were asked to provide input on how to organize the study results so that they are useful for their planning purposes. the outcome of this discussion is mirrored in the structure of the ‘results’ section of this study (chapter . ). the administrator focus group lasted for a total of hours and was both audio and video recorded. this recording was transcribed verbatim by a hired transcriptionist resulting in pages of written transcript. this data was analyzed as described in the ‘data analysis’ section of this chapter. . . . front line service worker focus group in order to follow a ‘collaborative’ approach to change (chreim et al, ), another focus group was conducted with front line service worker representatives to assist in depicting the current state of the sault ste. marie senior healthcare system from the perspective of an additional stakeholder group. these participants provided representation from four different levels of care and were recruited through a snowball sampling method (miles and huberman, ) by asking the key informant interviewees to recommend front line service workers that would be interested in participating in the project. the email addresses of these individuals were obtained from the interviewees and emails with the ‘front line service worker focus group letter of information’ (appendix b) were sent to determine their interest in participating in the study. those who expressed interest were provided with the location of the focus group and as well as a copy of the data that would be reviewed). the purpose of this focus group was to again create a platform for discussion among participants around the analyzed results from the semi-structured qualitative key informant interviews and non-participant observations. to remain consistent with the first study objective, the same powerpoint presentation that was given to the administrator focus group was presented to the front line service worker focus group. during this presentation ‘member checks’ were conducted again by asking the front line service workers to revise and add to the identified system gaps, problems, enablers to integration, and obstacles to integration. in addition, participants were asked to contribute to the development of a vision and goals for an integrated senior healthcare system in sault ste. marie by revising and adding to the themes identified in the interviews and non-participant observations. furthermore, providing both focus groups with the same results allowed the opportunity to find common and diverging experiences among the stakeholder groups (as described in chapter . ). the front line service worker focus group also allowed participants from various sectors within the sault ste. marie senior healthcare system to share their experiences. this activity increased front line service worker awareness of services that exist within the sault ste. marie senior healthcare system more so than what was experienced in the administrator focus group. this finding may contribute to addressing some of the obstacles that existing integrated senior healthcare system models faced including ‘difficulty building inter-organizational relationships’, as stakeholders began to see how their work processes could interconnect with services and stakeholders outside their own organizations. the front line service worker focus group lasted for a total of hours and was both audio and video recorded to allow for easy identification of the speakers. along with the assistance of a hired transcriptionist, this recording was transcribed verbatim resulting in pages of written transcript. this data was analyzed as described in the ‘data analysis’ section of this chapter. . . texts texts are the key data sources within ie studies that explain how the environment is organized by ruling relations because they are recognized as the: “...central nervous system running through and coordinating different sites” (devault and mccoy, ). therefore, researchers need to gain an understanding of the texts that are present within the environment under study in order to fully understand how that system is organized. texts can come in many varieties such as documents: “...on paper, on computer screens, or in computer files; it can also be a drawing, a photograph, a printed instrument reading, a video, or a sound recording” (devault and mccoy, ). the way that an ie researcher determines which texts to review is through the discussions that take place during non-participant observations, interviews, and focus groups. therefore, researchers must be: “...alert to catch informants’ references to texts or textual-mediated processes” and ask informants for copies or locations of these documents (devault and mccoy, ). the specific texts that were identified by the study participants during the data collection process include: websites and information pamphlets of all the organizations that provide care to seniors in sault ste. marie; mohltc and ne lhin websites; mohltc and ne lhin public announcements and/or communiques; the alternate level of care plan for the city of sault ste. marie (may , revised february, ); the long term care homes act ( ), and the assisted living services for high risk seniors policy ( ). this data was analyzed as described in the ‘data analysis’ section of this report. . data analysis data analysis within ie studies takes on many forms as it is driven by the objectives of the study and the environment of interest (devault and mccoy, ). therefore, the analysis within this study focused on depicting the current state the sault ste. marie senior healthcare system using a change management lens (figure ) and ie approaches as described below. . . first layer of analysis using an ie approach, the first layer of analysis within this study focused on analyzing the data at the ‘local level’ which assisted in forming an understanding of the environment of interest based on the collective experiences of the study participants. as explained above, the data from the interviews and the non-participant observations was presented during both the administrator and front line service worker focus groups, and therefore this information was analyzed first. to do this, within and cross analysis was conducted with the transcripts from the interviews and field notes from the non- participant observations using atlas t.i. version . . (creswell, ). within interview and non-participant observation analyses were carried out by coding for emergent themes based on the concepts within the adapted change management framework (figure ). for example, themes emerging from the interviewee’s responses to the questions concerning ‘system gaps’ were categorized under this heading and coded using the language of the interviewees. in order to further condense the codes that emerged from the within interview and non-participant observation analyses, a cross analysis was conducted by comparing the data to find common and diverging themes (creswell, ). this analysis resulted in the organization of the descriptive themes that were uncovered from the within analyses into abstract categories (miles and huberman, ). these results are presented in table . table : coding results of cross interview and non-participant observation analyses category themes system gaps lack of human resources lack of administrative funding for programs lack of affordable seniors apartments/ assisted living units in sault ste. marie lack of focus on importance of social aspect of a senior’s life to their health wait lists/times incompatible assessments/assessment tools system shift from institutional to community based care enablers of integration existing inter-organizational/ cross-sector relationships existing senior healthcare projects obstacles to integration organizational silos inter-organizational philosophical/treatment differences vision accountable seamless access single point of access a system that looks at the person holistically a system that realizes the importance of all levels along the continuum of care a system that is designed for seniors goals electronic medical record interagency news letter interagency meetings one place to go to access information about all services education, support, communication conduct senior consumer needs assessment establish appropriate needs identification processes to determine the accuracy of the initial findings within table , a powerpoint presentation of these results was developed and presented to the administrator and front line service worker focus groups (as described in the data collection section of this chapter). once this was complete, within and cross focus group analyses of the transcribed video and audio recordings were conducted using the same methods to analyze the interviews and non- participant observations. this analysis resulted in the restructuring of the findings within table which is mirrored in the results chapter of this study (chapter . ). also included in the final results are analyses from ‘memoing’ that i conducted throughout the data collection and analysis process (creswell, ). note: data that was collected during the interviews concerning ‘diversity’ was not coded as it was mainly descriptive of the programs and services within the sault ste. marie senior healthcare system. this information was used to fill in any missing information left by the participant’s websites and/or organization pamphlets. these results are reflected in system inventory and maps in chapter . . . . second layer of analysis- drawing the fault line a second layer of analysis has been conducted through the content analysis of the texts that were highlighted by the participants during the interviews, focus groups, and non- participant observations (as identified in the ‘texts’ section of this chapter) (devault and mccoy, ). this was done by reviewing the texts and comparing them to the themes that were uncovered through the within and cross interview, focus group, and non-participant observation analyses. through this comparison, disagreements or ‘fault lines’ among the participant’s experiences and the texts were found. the purpose of these comparisons is to analyze the root causes of the local level themes identified by study participants by exploring the impact of macro level decisions on the micro level activities. these results are presented in chapter . . . trustworthiness/credibility this research study obtained trustworthiness and credibility through three methods including the triangulation of data sources, member checks, and inter-coder agreement (lincoln & guba, ). to establish trustworthiness of the study’s findings, the data from all sources (interviews, focus groups, and non-participant observation) was triangulated and determined to be consistent with the results presented in chapter . . credibility was established by obtaining member checks through the focus groups with the members of the alc solutions group and front line service worker representatives to ensure the credibility of the findings. furthermore, to ensure that the analysis of the data was consistent, inter- coder agreement was established by the co-supervisors of this thesis project (creswell, ). this was accomplished by providing the co-supervisors with transcripts that i had coded along with a codebook that described the codes, which allowed them to review the analysis to determine their agreement. where there was disagreement, a discussion was had and common ground was found. establishing trustworthiness and credibility of the findings is an essential step in this study as the information gathered will only be useful to those who work in the sault ste. marie senior healthcare system if it is reflective of what is actually happening within that system. the following chapters will present the study’s findings which are a result of the data collection and analysis processes described above. chapter . results this chapter will present the local and high level results that were derived from the data collection and analysis processes explained in chapter . . the presentation of the results within ie studies is driven by the research objectives as well as the identified needs of the study participants (devault and mccoy, ). therefore, to achieve the first and second objectives of this study, the following section is organized in the sequence of the adapted change management framework (figure ) which is a method that was approved by study participants. figure provides a summary these findings. figure : summary of results as identified in figure , the results presented in sections . . to . . are derived from the first layer of analysis of the data from the interviews, focus groups, and non- participant observations. this layer of analysis depicts how the sault ste. marie senior healthcare system is organized at the ‘local level’ based on the interconnected experiences of . - stage one results: system gaps and desired end state . - stage two results: situational and key stakeholder analyses . . local level system gaps  lack of health human resources  funding gaps  gaps in system coordination . . local level desired end state  suggested vision  suggested goals to achieve vision . . local level system diversity  system inventory and visual maps of services . . local level enablers of integration  existing inter-organizational/ cross- sector relationships/ projects . . local level obstacles to integration  organizational silos  cross-sector/provider philosophical treatment differences . . high level obstacles to integration  mohltc/ ne lhin funding model  mohltc/ ne lhin policy/legislation  mohltc/ ne lhin politically driven decisions the administrators and front line service workers that participated in this study overall, the two stakeholder groups agreed on the identified themes. in instances where there were inconsistences among the two stakeholder groups, data and explanation are provided. section . . provides the results of the second layer of analysis which describes how the sault ste. marie senior healthcare system is organized at the ‘high level’ by drawing the ‘fault line’ between study participant’s local experiences and the texts identified in chapter . . the following sections will describe these results in further detail. . stage one: system gaps and desired end state the goal of the first stage of the adapted change management framework is to signify that there is a need for change by establishing that there is a gap between the current state of the sault ste. marie senior healthcare system and the desired end state (golden, ). to fulfill this stage, the following section provides the results of the identified system gaps, as well as the established vision and goals that depict the desired end state for an integrated sault ste. marie senior healthcare system. . . local level system gaps results system gaps are defined as missing resources/aspects within the sault ste. marie senior healthcare system that are contributing to system fragmentation and poor quality of care for seniors. three key gaps were identified by study participants including: lack of health human resources; funding gaps; and gaps in system coordination. . . . lack of health human resources the first gap that study participants identified was the lack of health human resources within the sault ste. marie senior healthcare system. figure provides a summary of this gap. figure : summary of gap- lack of health human resources as depicted in figure , study participants identified that there are gaps in the following health human resources: personal support workers; community physiotherapists; community occupational therapists; in-home care nurses; primary care geriatric specialists (includes both general and nurse practitioners); in-home care social workers; geriatric mental health workers; and volunteers. these gaps in health human resources lead to increased wait times for services which often cause service providers to be reluctant or unable to transition seniors to the appropriate level of care. for example, the lack of community physiotherapists creates an increased wait time for this service, which causes service providers from other sectors to be reluctant to transition their client to the community because the necessary supports are not in place. one study participant provides an example: “…. it makes our allied health and physicians more reluctant to discharge a patient before they’ve gotten them to the nth degree, because they know that there isn’t someone that’s going to be ready to go in” (interview, ). this reluctance to transition the client across sectors results in continuity of care issues as seniors often remain in inappropriate and more expensive care settings for longer periods of time. study participants identified five underlying causes for the lack of health human resources including: inequality of pay across sectors; inadequate training; lack of attraction to senior care; not using professionals to their full scope of practice; and youth migration. these underlying causes are described as follows: gap creates a problem: wait times for services personal support workers gap: health human resources community physiotherapists primary care geriatric specialists community occupational therapists in-home care nurses volunteers in-home care social workers geriatric mental health workers problem results in: inability/ reluctance to transition senior to appropriate level of care root causes of gap: inequality of pay across sectors inadequate training lack of attraction to senior care not using full scope of practice youth migration  inequality of pay across sectors: inequality of pay for professionals across sectors is a contributing factor to the lack of health human resources within the sault ste. marie senior healthcare system. participants explain that as the level of care increases the wages also increase, which makes it difficult for the various sectors to maintain staff for long periods of time as they tend to leave for the higher paying positions. one study participant explains: “…if you look at community and institutional there is quite a gap in wages. -…workers are drawn to long term care on the personal support worker level because the wages are better” (front line service worker focus group, ). this inequality of pay across sectors was also identified in other professions including physiotherapists, occupational therapists, and nurses.  inadequate training: another reason for the lack of health human resources within the sault ste. marie senior healthcare system is the difficulty that stakeholders are having with hiring qualified professionals due to inadequate training. this issue was particularly evident with personal support workers: “…the training for the community personal support workers and the training for the long term care personal support workers has been amalgamated into one program and that program isn’t proving the best resource to either (sector) because it is too generic to be effective” (administrative focus group, ). previously, the personal support worker program was provided in two streams, one specific to community needs, and one specific to long term care needs. these programs were combined into one general program, which has resulted in graduates that do not have the necessary skills or training to work in either care setting. participants identified that the personal support worker program needs to be evaluated as these professionals are a key resource to sustaining quality care for seniors.  lack of attraction to senior care: health professional’s lack of interest in working with the senior population was identified as another contributing factor to the lack of health human resources within the sault ste. marie senior healthcare system. participants described that this issue can be seen in the lack of primary care practitioners that specialize in geriatrics, the lack of interest in personal attendant and personal support worker professions, as well as the lack of volunteers for senior care services. one study participant explains: “… we are seeing a lack of volunteers, they are getting older, we are not seeing younger people volunteering… - when you think if we had paid staff for all these things that volunteers do, there’s nowhere near enough money” (front line service worker focus group, ). without sufficient specialized geriatric primary care practitioners, personal attendants, personal support workers, or volunteers, existing services that assist in maintaining seniors in their homes will decrease dramatically.  not using professionals to their full scope of practice: another cause of a lack of health human resources within the sault ste. marie senior healthcare system is the notion that existing healthcare professionals are not working to their full scope of practice. one front line service worker describes their experience: “one of the things that i see from primary care is that we are not utilizing nurses (rns) or registered practical nurses (rpns) to their full scope of practice. because a lot of the time we think about the doctor’s office, his or her nurse is usually the first person to maybe identify that there is a problem. -so they can do maybe a quick screen that identifies there is a problem…-so i think a lot of the time we are not utilizing our professionals that way that we really could be” (front line service worker focus group, ). within this example, not using health professionals to their maximum scope of practice creates a gap in human resources as it increases wait times to see physicians for care that could easily be provided by nurses, while simultaneously creating delays in needs identification and referral.  youth migration: another reason for the gap in health human resources within the sault ste. marie senior healthcare system is youth migration out of the community: “we have a high senior population and youth are leaving, so if you look down the road, even if you look at the number of people working compared to the number of people who are retired, you look at the demographics and understand what is ahead, it’s really scary but they are estimated one person working for every retired people” (front line service worker focus group, ). as the senior population is increasing in sault ste. marie, the working population is decreasing which is causing a deficiency in the available human resources. . . . funding gaps study participants identified two specific areas where funding has caused issues within the sault ste. marie senior healthcare system including; lack of administrative funding to fulfill reporting requirements; and lack of preventative services for seniors. figure provides a summary of this gap. figure : summary of funding gaps the following sections describe figure in further detail. . . . . lack of administrative funding to fulfill reporting requirements as depicted in figure , study participants identified that there is a lack of administrative funding attached to north east local health integration network (ne lhin) funded programs. these programs are primarily funded for the front line human resources that are required to support them, and lack administrative funding to fulfill the ne lhin reporting and accountability requirements. one participant provides an example of their experience: i know in long term care the mohltc has just created a brand new regulation/policy/procedure and it’s just horrendous, the reporting requirements that are demanded from us in long term care. and with the new regulations it’s probably doubled the work load. yet, no extra funding coming in, no extra human resources coming in (front line service worker focus group, ). this gap in administrative funding for ne lhin programs was also identified by study participants in other sectors including in-home care and assisted living. this problem results in the following issues: gap: funding affordable transportation affordable housing with assisted living supports lack of funding for preventative services for seniors geriatric day hospital seniors mental health services affordable foot care gap creates problems: less time spent with seniors less time spent on staff education/ training issues with quality of collected data basic in-home care services lack of administrative funding to fulfill reporting requirements reluctance/ inability to transition client to appropriate level of care gap creates problem:  front line staff spending less time with seniors: the administrative burden that is being put on front line service workers is causing them to have to make decisions between providing care to their client, or completing the paper work that is required by the mohltc and the ne lhin: “…workers to have to make that choice of toileting their resident or completing their care plan, and that should be a no brainer. but if that care plan isn’t met the ministry would be down your throat and if the resident wasn’t toileted the only one who knows is me and you, right?” (administrative focus group, ). because front line service workers are forced to make these types of choices, various sectors are seeing high staff turnover, burnout, and moral distress.  less time spent on staff education/training: the administrative burden being put on service providers is also creating a situation where there is no time for additional education or training. one study participant explains: “i think that you do see less time on staff education and training, it’s pretty much almost at the (organization omitted), it is non-existent. -if you want to attend something it is on your own time outside of work hours because the staff really can’t get away from what they are doing. -…so i think that there is a huge problem when it comes to keeping staff current on education and best practices” (front line service worker focus group, ). the inability of staff to attend educational or system planning sessions creates barriers to providing the best possible care to seniors as service providers are unable to remain apprised of best practices.  quality of data collection: by not providing adequate administrative support for ne lhin funded programs, study participants identified the data that is being collected may be incorrect because the workload of the front line service workers who are collecting the data is too heavy. one study participant explains: “…we are detailing things to death without the resources to support it. so who knows if even the data that we are collecting is valid. it’s not being done with careful thought” (administrative focus group, ). if the data that is being collected is not valid, the mohltc and the ne lhin may be making misinformed system decisions. . . . . lack of preventative senior services as depicted in figure , study participants identified that there is a lack of funding for the following services in the sault ste. marie senior healthcare system: affordable housing with assisted living supports; geriatric day hospital; affordable foot care; affordable transportation; seniors’ mental health services; and basic in-home care services. these services specifically focus on assisting seniors to age in place within the community to prevent them from going into long term or acute care settings. however, because of these gaps in preventative services, study participants identified there is a reluctance to transition clients into community services, and therefore seniors may end up in inappropriate, often more expensive levels of care. the gaps in services are described in further detail as follows:  lack of affordable seniors housing with assisted living supports: the lack of affordable senior’s housing with assisted living supports was identified by the majority of participants as the most significant problem within sault ste. marie’s senior healthcare system. one participant describes this issue: …we don’t have enough housing. so we could get people to appropriate settings if we have appropriate settings. we have the hospital, long term care, and a little bit in the middle. no assisted living, not sufficient assisted living. so we could be fighting this as long as we want, but if we don’t’ have that physical structure in between, we won’t change anything (administrative focus group, ). this gap creates situations where seniors are referred to higher, more expensive, and often inappropriate levels of care such as long term or acute care. one study participant provides an example: “i have six people here that could go tomorrow, and want to go, be there’s nowhere for them to go. and they couldn’t go into independent living, they would still need some sort of support system, but they certainly don’t need long term care” (interviewee, ). although the lack of senior’s affordable housing with assisted living supports was identified by the majority of participants as one of the major gaps within sault ste. marie’s senior healthcare system, certain study participants identified that they do not actually believe that this gap exists: …it’s not a question that there is not a place for people to go, because certainly some of these folks could apply and put their name on the waiting list to get into seniors housing and move to seniors housing.- …there is seniors housing, affordable housing available, they have to wait but they can move in that direction… (administrator focus group, ). currently there are approximately people on the waitlist for an affordable senior’s apartment, which is perceived by housing providers to be appropriate because a balance is required in to maintain occupancy levels. however, based on the accounts of other study participants, the wait for an affordable senior’s apartment is too long. one reasons for this dichotomy among participants could be because service providers are not referring to certain organizations because they assume that the senior will not obtain timely access. one study participant explains: “sometimes though, when there’s wait-list for community service agencies, people stop referring. for example, the (organization omitted) used to have a two-year wait-list for their attendant care apartments, or outreach attendant care. i think people tended to not refer, but that doesn’t help the agency show the need for funding. so we’re not doing the greater public at large, the community at large, a service by not referring” (interviewee, ). this lack of referral begs the question, ‘are there more than people in need of an affordable seniors apartment in sault ste. marie, and have they not applied because they perceive the waitlist to be too long?’ if the answer to this question is yes, then this creates issues with expanding affordable seniors housing because of the fear that the supply will outweigh the demand. one study participant explains: “it’s not to say that we couldn’t build another senior unit, but you have to watch for that balance, because all of a sudden now you build too many units and you have some seniors that are between and years old, well you could end up with an empty building” (interviewee, ). this indicates that referrals need to be made to the appropriate level of care, even if service providers assume that there is a long wait list, in order to show the demand to promote funding and expansion for the service.  geriatric day hospital/link to primary care: study participants identified that there is a gap in the link to primary care services for seniors in sault ste. marie and that this gap may be contributing to the presence of seniors in higher levels of care: “i think when people always had family physicians, there probably weren’t as many people lining up in ‘emerge” (interview, ). participants explained that this gap is perpetuated by the lack of a geriatric day hospital within the community as this resource would assist in increasing the link to primary care and early detection of chronic diseases.  affordable foot care: participants identified that there is a lack of affordable foot care for seniors in sault ste. marie: “i think the fee now is $ or $ … if they’re on a very limited income, they look at that and say ‘-oh no, i could buy groceries for the whole week’, so they stall. it’s long between appointments, if they even do it at all, and then they trying doing it on their own, and they can’t see, and they cut something too short, next thing you know we have an infection…”(interview, ). affordable foot care for seniors is necessary to prevent their needs from escalating to the point where they need to go to the hospital.  lack of affordable transportation/difficulties with existing transportation: study participants identified that there is a lack of affordable transportation for seniors in sault ste. marie. some existing transportation options include the para- bus, red cross volunteer drivers, taxis and gateway mobility, however cost and scheduling creates access barriers for many seniors. one participant explains that scheduling barriers for the para-bus prevent seniors from participating in social activities: “…the para-bus, i don’t know what order it is in, but it’s medical appointments, it’s people who work, social is last on the list… the practice should be looking at things and recognizing that social shouldn’t be so far down on the list. because if you’re looking at the big picture in terms of your hospitals or your nursing homes or your whatever, the longer you keep people out of those places, seems to me the more money you’re saving. it’s far cheaper to transport ten people here, than it is to admit one to the hospital for a day” (interviewee, ). if access to affordable transportation was increased, more seniors may be able to age in place longer.  lack of appropriate care for seniors with mental health needs: there are a lack of services for seniors with mental health needs in sault ste. marie. this lack of service causes them to be sent to long term care and/or the hospital which is not the appropriate place for them to be. the acute care centre in sault ste. marie runs a seniors mental health program however the wait list for this service is to months. a new ne lhin funded initiative called behavioural supports ontario is meant to assist in meeting the needs of older adults with responsive behaviours, however this program is currently in the process of being implemented and the effects have not yet been realized.  lack of funding for basic in-home care services: participants identified that there is a gap in funding for basic in-home care services within the sault ste. marie senior healthcare system. one study participant explains: “…he sold his home because he no longer had the energy to do all the yard work and house work, and he couldn’t clean his bathroom because he couldn’t get down to clean the tub, the toilet, all of that kind of stuff, and that was when the decision was made, and this was years ago, to cut housekeeping out of the community based service delivery options. i will tell you that it just spiralled after that, because people couldn’t stay in their homes, and it can be as simple as that. you have people that are in very complex situations, expensive situations for reasons such as this” (interviewee, ). if resources for basic in-home care services such as laundry, house-keeping, and snow shoveling were increased, many more seniors would be able to stay in their homes for longer periods of time, thereby preventing the use of higher levels of care. . . . gaps in system coordination study participants identified that there are gaps in system coordination which are negatively affecting continuity of care within the sault ste. marie senior healthcare system as follows: gaps in sector specific assessment tools; and difficulties with the system shift from institutional to community based care. figure provides a summary of this gap. figure : summary of gaps in system coordination the following sections provide further details about the gaps outlined in figure . . . . . incompatible assessment tools within the sault ste. marie senior healthcare system, sector specific standardized ‘resident assessment instrument ‘(rai) tools are currently being used to assess the needs of seniors within the following levels of care: acute care, long term care, home care, and community support services. although these tools are developed by the same company and are meant to increase connections across levels of care, study participants explain that they create issues with transitions across sectors for the following reasons:  rai assessments do not interlink across sectors: the various sector specific rai assessments do not inter-link or auto-populate across sectors. this means that information that is collected in a rai-hc (home care) for example, cannot be viewed or used in a rai-mds (long term care) if the senior needs to change care levels. one participant describes this problem: “there’s a, it’s called pcc, point-click-care; it’s a repository where the rais are held, but who has access to what rais, that varies. and there’s a variety of rais for different sectors now. community service sector, say assisted living, they started to use a rai-cha. how they interlink, they don’t. they don’t all auto-populate each other” (interview, ). this problem creates issues with information sharing and the over-assessment of seniors across sectors. gap: system coordination incompatible assessment tools difficulties with shift from institutional to community-based care gap results in: inappropriate transitions across levels of care / over-assessment of seniors rai assessments do not interlink across sectors rai assessments not accurate across sectors lack of trust of assessment information among providers system in limbo while money is being transferred lack of awareness of existing services taking resources away from low and medium needs to service higher needs lack of recognition of the importance of senior’s mental well- being gap result in: seniors in inappropriate care settings personal and organizational accountability of information within assessments  rai assessments are not accurate across sectors: study participants identified that rai assessments are not accurate across sectors in terms of the level of care that they are identifying the senior requires. for example, a senior may be deemed ‘moderate care’ by one assessment and ‘light care’ by another. one study participant explains this dilemma: “you heard her (name omitted) say yesterday that when they do an assessment the resident is at moderate care. so moderate care in their assessment is light care in our assessment. so they don’t even speak the same language back and forth. i mean…they’re looking at different levels of care from different viewpoints. but when they cross systems, it doesn’t match at all” (interview, ). this causes continuity issues as seniors are being transitioned into inappropriate levels of care due to the incorrect information within the assessments.  lack of trust of assessment information among service providers: in addition to the above two problems, study participants identified that there is a lack of trust of the information within the rai assessments among service providers across sectors: “we certainly don’t trust the information that we get from the (organization omitted) currently, the rai-mds is only as good as the coders, and so if you don’t have good coders, then the information isn’t trustworthy” (interview, ). this participant explains that this lack of trust is perpetuated by experiences that they have had with sectors not being fully forthcoming about the severity of the condition of the senior within the rai assessment: “…because it appears that the (organization omitted) staff aren’t forthcoming, because they know that if they identify too many behaviours, the homes are going say no to them” (interview, ). this creates difficulties with transitions because staff at the receiving organization are not prepared to provide the appropriate level of care to the senior because the assessment did not reveal the true level of care required. this not only creates dangerous situations for both staff and the senior, but it also causes the need to reassess the senior once they are transitioned through levels of care.  personal and organizational accountability of information within assessments: study participants identified that another reason for reassessing a senior is due to the need for the service providers to ensure their own personal accountability. one study participant explains: “…if i notice an assessment was done, i don’t even look at it, i do my own because i am accountable. i need to show what i have done. so it just becomes about me and i know a lot of nurses work like that. i need to show my own accountability” (front line service worker focus group, ). this need to show personal accountability for the senior is not only perpetuated by the individual service provider, but also through the individual organizations that they work for: “…maybe it’s not the individuals in the organizations but it’s the agency itself. i hear different things, saying you know you must do it yourself, this is your client, you must have that assessment, you can’t trust someone else’s assessment” (front line service worker focus group, ). the issue of organizations and service providers wanting to show their own accountability in relation to assessments greatly contributes to the poor use of existing human resources and the over-assessment of seniors: “…clients are being assessed to death and they can take hours. you wonder, i wouldn’t want to be going through an assessment for - hours myself, that would be draining. imagine what it is like for a senior” (front line service worker focus group, ). . . . . difficulties with system shift from institutional to community-based care within the sault ste. marie senior healthcare system there is a system-wide initiative to shift resources from institutional (acute and long term care) to community based care (assisted living and in-home care). this shift can be seen through the numerous initiatives that the mohltc and ne lhin have implemented (as outlined in the ‘enablers to integration’ section of this chapter). although this shift is identified by study participants as a positive and necessary initiative, they also identified the following issues which are perpetuating gaps within the system during this transition:  system is in limbo while money is being transferred: when the acute care centre within sault ste. marie moved to their new location in march , temporary alc beds remained open at the old acute care centre site to assist with alc pressures. the plan for these beds has been to gradually decant them and move the funding (approximately million dollars) into community- based services to prevent hospital visits from seniors and allow them to age in place in the community. along with this transition process, there are challenges with getting the community- based services ready to support the patients who are being discharged as the system is in limbo while the money is being transferred. one study participant describes this process as a trapeze act: “so you are holding onto the one trapeze which is the hospital, long term care, bricks and mortar, and the other trapeze that is out there swinging towards us is all of the right care in the right place at the right time, and supporting people in the community in their homes. so we have to let go of this trapeze (bricks and mortar) to hurdle through the air for a while to grab on to that other one (community-based), and you can’t grab onto the other one until the dollars start to flow. – as you are sailing through the air, going from one trapeze to the other, the money is still at the hospital trapeze” (interviewee, ).to address this transition issue, study participants identified community capacity will have to be increased prior to decreasing the capacity at the old hospital site.  lack of awareness of existing services/lack of stakeholder cultural shift: although the mohltc and the ne lhin are now focusing on shifting resources from institutional to community-based care, study participants identified that seniors are continuing to go to the hospital for service. this issue has partially been attributed to the lack of awareness among stakeholders of all available services within the sault ste. marie senior healthcare system. this lack of awareness contributes to the presence of seniors at the hospital as they may be given misinformation about various care options available within the community. for example, a physician’s lack of awareness of all available services may cause them to only refer to the services that they are familiar with even though the service may not be appropriate for the needs of the senior: “…people don’t know what all the services are. you don’t know what every place offers and so i know with some physicians they get stuck referring to a place that they are really familiar with but my it is not the best place for the patient” (front line service worker focus group, ). participants explain that these situations may be contributing to the presence of seniors at the hospital as they are not being referred to the appropriate level of care within the community which may cause their conditions to escalate to the point where they must go to the hospital for service. study participants identified that a significant cultural shift needs to occur in order to address the lack of awareness among stakeholders of existing services to redirect seniors to appropriate community-based services for their healthcare needs. as one participant explains: “the education shift, it needs to happen with potential consumers, but also doctors, nurses, discharge planners, ambulance drivers… these people need to be giving consumers the right information so that they can make rational decisions with their families” (interviewee, ).  taking resources away from lower and medium needs to service higher needs seniors: study participants also identified that with the shift from institutional to community based care they are seeing community resources being taken away from low and medium needs seniors to service higher needs seniors in the community. one study participant explains: “and i know we are looking at additional funding going back into the community for high risk seniors, where i see a gap and i think that they are going to look at that, are people who haven’t quite achieved the high risk senior status, they are compromised, they need more help than they can get right now and without that help they will deteriorate, they are going to end up in hospital in alc maybe sooner than someone who is a high risk senior” (front line service worker focus group, ). this lack of focus on low and medium needs seniors may create situations where these senior’s care needs escalate at a faster pace than if they had minimal care supports in place. furthermore, it creates situations where seniors who are living independently fall through system cracks and get into dangerous, sometimes life threatening situations: “she had an electric chair- well the power went out- when it came back on, the chair didn’t come back on. so she, she couldn’t come down in the chair. she had tried to wiggle herself down- then she was afraid of falling, she was a day and a half, she was soaking wet, hungry… i forget what we called her for. she’d signed up for something and didn’t come or something. the phone rang and rang and rang, and we, i went up there. banged on the door, and it was, ‘get the custodian’, so i had to get down to him, he came up, unlocked the door for us, to get in, and ‘thank god you’re here!’ she was caught in her chair. she couldn’t reach her phone” (interview, ). in this story, the senior was only found because a member of her social circle called her to see if she was ok. what would have happened if that senior was not a part of a social circle? how many other seniors are falling through system cracks because of the lack of focus on low and medium needs individuals?  lack of recognition of the importance of senior’s mental welling-being to their overall health: as identified in the above bullet, with the shift from institutional to community-based care, resources are being taken away from low and medium needs seniors. this gap is creating a system that does not recognize of the importance of seniors’ mental well-being to maintaining their overall physical health. ensuring senior’s mental well-being requires the system to look at seniors in a holistic manner by considering their social, emotional, and security needs. one study participant explains: “…she still lives in her own home and worries about keeping the place clean and making bread and what her garden looks like, and if she didn’t have those things, the really basic things, she would deteriorate mentally very quickly, and soon after that it would be physical” (interview, ). without mental well-being a senior’s physical state may begin to wane at a faster pace which in turn puts more strain on the healthcare system. this lack of focus on the importance of senior’s mental well-being to their overall health can be seen in current change to the assisted living service delivery structure. previously, assisted living services were delivered in a more client-based format where each senior would have the same person coming into their home to provide a range of services. now, these services are provided through a task-based format where the senior has numerous people coming into their home to provide each specific service. one study participant explains how this change has upset many seniors because they are no longer able to build a relationship with the person who is coming into their home to assist them: “now you’re putting the deed before the person, and you know, sometimes it doesn’t really matter if the floor gets swept, but if mrs. smith has somebody exchanging a few pleasant words, perking her up, so there’s a couple of crumbs” (interview, ). the relationships that seniors were able to build with assisted living providers contributed to maintaining their mental well-being and assisted in helping them to age in place for longer periods of time. participants also identified that the previous assisted living service delivery structure created an environment where providers were able to flag when they saw changes in senior’s healthcare needs because of the relationship that they were able to build with the senior. one study participant explains: “quite often an average visit is minutes, you know ‘hi how are you?’ i’m going to check the chart, i’m going to talk to you, let’s give you a quick shower, see you later.’ and not really seeing that person as a person, you know years ago that was a huge piece of the care plan, the eyes on the social interaction. because if people have deteriorating cognitive abilities, they can hold it together for - minutes, but if you are there longer you are going to see some issues that are being identified and sometimes it comes at a surprise ‘the client’s at this level? why did no one report it’? well because we are so task oriented when we go in that we are not really seeing the person as a whole” (front live service worker focus group, ). now that assisted living workers are unable to build strong relationships with the seniors that they serve, will more seniors who are receiving this service end up in higher levels of care because their deteriorating conditions were not flagged? summary of section . . - system gap results the above section clearly demonstrates that administrative and front line service worker stakeholders have and are continuing to experience significant gaps within the current sault ste. marie senior healthcare system that are contributing to continuity of care issues, inappropriate transitions across levels of care, seniors being in inappropriate care settings, and administrative/front line service worker burnout. the following section provides the results of how study participants believe that the structure of the sault ste. marie senior healthcare system should change in order to address the identified system gaps. . . local level desired end state the next step in stage one of the adapted change management framework is to determine the desired end state of the sault ste. marie senior healthcare system by establishing a vision and measureable goals in light of the gaps identified in section . . . these results are presented below. . . . vision for an integrated senior healthcare system in sault ste. marie to establish a vision for an integrated senior healthcare system in sault ste. marie, participants were asked explain their ideas for an improved senior healthcare system during the key informant interviews. this information was cross-analyzed and presented to the participants in both focus groups where revisions and additions were made. all of the results were compared and the following vision was formed: “a system that is designed for seniors, looks at the senior holistically, provides a coordinated single point of access, and recognizes the importance of all levels along the continuum of care”. this vision along with the goals outlined in section . . . , will guide the change towards an integrated senior healthcare system in sault ste. marie. . . . goals to achieve the vision for an integrated senior healthcare system in sault ste. marie study participants were asked to identify goals that would assist change leaders in achieving the established vision in section . . . . the overarching goal that was identified is the creation of an independent umbrella organization/board that would overlay the entire senior healthcare system and be the single point of access for senior healthcare in sault ste. marie. this organization/board would work with the ne lhin and existing senior healthcare service providers to accomplish the following goals:  establish a single point of access and system navigation: this single point of access would be one place for seniors, their support networks, and service providers to go to get assistance with system navigation and information. all levels along the sault ste. marie senior continuum of care would be included and seniors would be attached to ‘care coordinators or system navigators’ to assist them in obtaining the appropriate level of care.  implement a mandatory system-wide electronic medical record: a key component of the single point of access and system navigation would be the implementation of a mandatory system-wide electronic medical record. this record is necessary to allow information sharing across sectors, to track senior care processes, and to reduce the over-assessment of seniors.  develop a live senior healthcare portal: an additional key component of the single point of access is a live senior healthcare portal that would house information about all existing services within the sault ste. marie senior healthcare system. in addition to this inventory, a live bulletin or dashboard of current system events would be on the home page. for example, if there was an outbreak at the hospital, the dashboard would display this information along with other care pathways that stakeholders could use.  system education, awareness, and communication: the single point of access umbrella organization/board would be accountable for ensuring public and stakeholder education and awareness about the appropriate actions to take when moving through the sault ste. marie senior healthcare system. they could also create a campaign that promotes awareness of all of the existing services within the sault ste. marie senior healthcare system.  system needs identification, planning, and resource allocation: the single point of access umbrella organization/board would also be accountable for identification of sault ste. marie senior healthcare system gaps, problems, and duplications. they would work with the ne lhin and existing providers to implement and realign resources where necessary. study participants explained that the umbrella organization/board described above would differ from the ne lhin as it would only be accountable for the senior healthcare system in sault ste. marie, whereas the ne lhin is accountable for: “…planning, integrating and funding health care services for more than , people across an estimated , square kilometers” (ne lhin website- about us, ). this accountability includes the oversight of health care providers that fall under the following categories: “…hospitals, community support services, mental health and addictions, community health centres, long- term care homes, and the community care access centre” (ne lhin website-about us, ). with this large range of accountability, many of the initiatives that the ne lhin implements are regional (e.g. behavioural supports ontario; specialized geriatric services; slips, trips, and falls prevention, etc.). study participants identified that these regional- based initiatives may not always meet the specific needs of seniors within sault ste. marie as this community has access different resources than other communities within the ne lhin planning area. therefore, the single point of access umbrella organization/board described by study participants would assist the ne lhin with the development of local plans for regional initiatives to ensure that the resources within the sault ste. marie senior healthcare system are being used as efficiently and effectively as possible. figure provides a draft diagram of the potential structure of this organization: figure : draft structure of sault ste. marie senior healthcare system single point of access umbrella organization/board mandatory system-wide emr ne lhin sault ste. marie senior healthcare system single point of access umbrella organization/board live senior healthcare portal system education, awareness, and communication system needs identification and planning system navigation summary of section . - stage one: system gaps and desired end state the results presented in stage one (section . ) clearly demonstrate that there is a gap between the current state of the sault ste. marie senior healthcare system and the desired end state which signifies the need for change. the specific change direction that participants identified is the need for a single point of access umbrella organization/board to oversee the sault ste. marie senior healthcare system to assist in achieving the established vision and addressing the identified system gaps. the following section describes the results of stage two of the adapted change management framework. . stage two: situational and key stakeholder analyses the following section presents the results of the situational and key stakeholder analyses within stage two of the adapted change management framework by identifying system diversity, as well as perceived enablers and obstacles to integration. . . local level system diversity: inventory & visual maps of organizations and services determining the diversity within the sault ste. marie senior healthcare system is the first step of the second stage within the adapted change management framework. the concept of diversity focuses on conducting a situational analysis that depicts the organizations and services that currently provide care to seniors within sault ste. marie. the purpose of this is to increase stakeholders’ awareness and understanding of the existing resources within their system. this increased awareness will assist stakeholders in selecting/constructing a change design that takes advantage and includes their existing resources, rather than a design that excludes or does not make connections among valuable services. the results of this analysis have been organized in a system inventory (appendix e) which includes in-depth descriptions of sault ste. marie’s senior healthcare services, as well as visual maps that summarize this information by sector under the following headings: acute care, long term care, retirement residences, independent living, assisted living, in-home care services, community support services, primary care/allied health/specialized services, and system planning/navigation. figure provides a summary of the information within appendix e and depicts a holistic picture the sault ste. marie senior continuum of care. figure : sault ste. marie senior continuum of care (not to scale) based on the results presented in figure and appendix e, there are a total of organizations that are currently providing care and support to seniors within sault ste. marie (organizations may appear in figure and appendix e numerous times as they may be providing services in numerous sectors, however they are only counted once to reflect the total of organizations). this information is based on data gathered from the key informant interviews and focus groups conducted within this study, as well as an exhaustive search for data in the texts identified by study participants (i.e. organization websites and pamphlets). another source that was used to fill in information gaps is the service database developed by the north east community care access centre ( ) called the ‘northeasthealthline’. although a thorough search for sault ste. marie senior healthcare services was conducted, there may still be other services or organizations that are currently providing care to seniors within sault ste. marie that have not been captured. therefore, the inventory of services and visual maps should be used as a base tool by stakeholders that can be expanded should additional organizations and/or services be discovered. this tool, along with other results presented in this chapter will assist change leaders in developing an informed and inclusive plan when operationalizing the established desired end state (section . . ). the following sections present the results of the enablers and obstacles to integration. . . local level enablers to integration depicting the enablers of integration is the first step in the key stakeholder analysis portion of the adapted change management framework. the purpose of depicting ‘enablers of integration’ is to identify key stakeholder strengths and resources/activities that be leveraged to assist in achieving the established vision and measurable goals. these results are presented below. . . . existing inter-organizational and cross sector relationships/ projects the overarching enabler to integration that study participants identified are the inter- organizational and cross-sector relationships and projects that currently exist within the sault ste. marie senior healthcare system. these relationships/projects fall under six main categories including: system planning and improvement; developing a coordinated single point of access; addressing gaps in geriatric mental health; addressing gaps in affordable housing with assisted living supports; helping seniors to obtain the appropriate level of care; and increasing stakeholder’s awareness and education. study participants identified that these activities have started to create more discussion and more willingness to partner among service providers. one study participant explains: “i find that people have a better understanding of each other’s roles, and there seems to be a willingness to share resources, and to come up with solutions that help each other. so i think that willingness to work as a team is really positive” (interview, ). participants explain that this willingness to partner and work together is a positive change from previous circumstances, and that this behaviour may assist in providing momentum for the established vision and measurable goals as inter-organizational and cross-sector cooperation will be necessary to accomplish the change. figure provides a summary of this enabler to integration. the aspects of the identified relationships and partnerships that may act as enablers to integration include the notion that they are beginning to bring stakeholders from various sectors to the same planning table; they are beginning to address some of the identified system gaps (i.e. geriatric mental health, affordable housing with assisted living support); and they are beginning to fulfill some of the measureable goals identified by participants (i.e. system planning and improvement, developing a coordinated single point of access, helping seniors to obtain the appropriate level of care; and increasing stakeholder’s awareness and education). although this positive shift in behaviour has been identified as an enabler to integration, participants also explained that there is still significant room for improvement, and that the relationships and projects identified below are just breaching the surface of the actual change that needs to occur. this notion became evident as participants described ‘obstacles to integration’, presented in section . . . figure : summary of existing inter-organizational and cross sector relationships/ projects  cross sector meetings/ committees  age friendly community initiative enabler of integration: existing inter-organizational and cross sector relationships/projects  assisted living in seniors apartments  interest in developing seniors apartments  tenant support workers in seniors apartments  new long term care facility and vacant old long term care homes  northern repair program  community support system navigator  resource matching and referral  shift from institutional to community based care  home first  behavioural supports ontario  triaged health  d’s project system planning and improvement developing a coordinated single point of access addressing gaps in affordable housing with assisted living supports addressing gaps in geriatric mental health services assisting seniors in obtaining the appropriate level of care increasing stakeholder’s awareness and education enabler leads to: cross-sector willingness to partner, increased stakeholder cooperation the following section provides a description of the projects and relationships outlined in figure . . . . . system planning and improvement relationships/projects  cross sector meetings/committees: there are many cross-sector meetings and committees within the sault ste. marie senior healthcare system that bring service providers form all sectors to the same table to discuss new initiatives and/or how to address system problems. one study participant explains: “i think the fact that everybody’s at the table at lhin meetings is helpful. like, not just alc solutions, but, for example, today we’re talking about potentially extending hospital crisis designation. it used to be either the lhin would have that discussion with us, or they’d have it with the hospital; now we have it as a group. and everybody’s time is valuable now, right? so we rarely have isolated sector meetings anymore” (interview, ). study participants identified the following committees that are focused on senior healthcare system planning in sault ste. marie: regional alc committee; sault ste. marie alc solutions group; sault ste. marie assisted living committee; partners in care committee; sault ste. marie long term care committee; community support network; behavioural supports ontario committee; and the dementia network. these cross-sector committees can be leveraged when moving forward with the established change as the relationships and provider familiarity that is being established within them will be necessary successfully operationalize the change.  age friendly community: the city of sault ste. marie is in the process of taking steps to become part of the world health organization’s (who) network of age- friendly cities. in order to achieve this standing: “sault ste. marie’s current status will be assessed against a series of requirements set out by the who in order to become a part of the network. a written year plan that adheres to those requirements and addresses where the city falls short will be put in place and continuously followed with ongoing revisions and considerations to meet the needs identified by the community” (age-friendly sault ste. marie-phase one, ). to follow through with these requirements, a number of volunteer steering committees have been established and a series of research in consultation with seniors and system experts is being conducted. obtaining age-friendly status within sault ste. marie will greatly benefit seniors by addressing issues within the community to assist in improving their quality of life. this project can be leveraged when moving forward with established desired end state as it provides an existing platform for discussion with seniors to ensure that the umbrella organization is designed for their needs. . . . . developing a coordinated single point of access  community support system navigator: a community support system navigator position has been created in sault ste. marie. the goal of this position is to address healthcare system issues and create connections among services to assist seniors is accessing the appropriate level of care through a coordinated single point of access. in addition to beginning to address some of the identified goals to achieve the established desired end state, this position will be essential to move the change towards an integrated senior healthcare system forward as it is currently acting as the common thread through the senior healthcare planning committees. this common thread is essential to ensure integrated planning among various initiatives. although this position is shown to be a positive initiative, the results of ‘obstacles to integration’ demonstrate that additional work needs to be done in terms of breaking down organizational silos and philosophical treatment differences to achieve true system coordination and planning.  resource matching and referral: study participants also identified that the ne lhin is in the process of conducting a ‘resource matching and referral’ project to assist in increasing connections to community support services from the hospital by reducing the number of referral forms that are currently being used. this project is essential to use when moving forward with the desired end state as it is focusing on the operational aspect of integration in terms creating coordinated referrals throughout the system. . . . . addressing gaps in geriatric mental health resources  behavioural supports ontario: behavioural supports ontario (bso) is a ne lhin and mohltc initiative to develop: “…a comprehensive system of support to improve care for older adults with behaviours associated with complex and challenging mental health, dementia or other neurological conditions, and also for their care givers” (ne lhin website-bso, ). this initiative is currently being implemented within the sault ste. marie senior healthcare system and has been identified by study participants as a resource that will assist with addressing gaps in services for senior with mental health needs. . . . . addressing gaps in affordable housing with assisted living supports  assisted living in seniors apartments: three assisted living service providers have been providing assisted living for seniors in existing senior’s independent living apartment buildings. one service provider has been given funding to expand their services in the downtown area to additional apartment buildings where there is a high density of seniors living in subsidized housing. this initiative should be sustained when moving forward as it is a successful project that is beginning to address gaps in assisted living with affordable housing supports.  interest in developing seniors apartments: study participants have identified that there are existing organizations and private developers that have an interest in building seniors apartment complexes in sault ste. marie. these organizations and developers would be open to creating a space for assisted living service providers within the building. this interest in an excellent opportunity for the sault ste. marie senior healthcare system as it may assist in addressing one of the major gaps that has been identified, ‘lack of affordable seniors housing with assisted living supports’.  tenant support workers in seniors apartments: the sault ste. marie housing corporation has three tenant support staff that work with individuals in subsidized apartments to facilitate referrals and access to community services based their identified need. these additional supports are helping seniors to age in place longer by assisting them with healthcare system navigation to get them into the appropriate supports.  new long term care facility and vacant old long term care homes: within sault ste. marie a new bed long term care facility is currently being built. this facility is not creating any new long term care beds, rather it is upgrading existing b and c beds to a beds. this means that certain existing long term care facilities will move their residents to the new long term care facility, leaving the old buildings vacant. this creates and opportunity as there will be space that could be transformed into affordable seniors’ apartments, however no plans have been created for the anticipated vacant space to date.  northern repair program: the city of sault ste. marie housing corporation has a northern repair program that has assisted seniors in retrofitting their existing homes which has enabled them to age in place longer. one study participant describes the successful program: “well there was one individual, it was just before easter, i think last year or the year before, and they were in that predicament. so we went there and we made that house accessible, put ramps in it, redid the washroom and the shower, did other things, and that person was able to get out of the hospital and go home. so, it’s a great program, and it really, of course stimulates the economy, local contractors are now working all year round, suppliers are supplying these guys and the money stays in the community” (interview, ). this program should be expanded when moving forward with the established change as it assists seniors in aging in place within their own homes, which may take some of the pressure off of the need to build additional affordable seniors housing complexes. . . . . assisting seniors in obtaining the appropriate level of care  system shift from institutional to community based care/plummer site transition plan: although study participants identified that there are certain issues with the transition phase of the shift from institutional to community based care, all study participants see the benefit in this change: “i think as transformation occurs and funding is shifting to the community, i think there will be some natural improvements in gaps in service” (interview, ). with the shift from institutional to community based care, the old acute care centre site which houses alc beds is in the process of being decanted: “so as they downsize the (organization omitted), you will hopefully see the uprising of community supports. because there is million dollars tied up in that program, they are saying as that program shrinks because it was an interim thing, that million dollars will flow to the community and this is huge for the community” (interview, ). this additional funding resource will assist in addressing the identified service gaps, and should be harnessed when moving forward with the established change.  home first: home first is “…a significant shift in health care thinking. when a person enters a hospital with an acute episode, every effort is made to ensure adequate resources are in place to support the person to ultimately go home on discharge. only when returning home with care is not possible or safe to do so, are other options considered” (ne lhin website- home first, ). in august, the home first philosophy was implemented in partnership with the ne ccac in sault ste. marie. it is an ongoing program that participants identified as beneficial to the sault ste. marie senior healthcare system in assisting seniors to obtain the appropriate level of care. . . . . increasing stakeholder’s awareness and education  triaged health: “triaged health is a free service created for the people living in or visiting sault ste. marie and surrounding area. through a virtual navigation system, this site is intended to assist you connect with the health care service(s) you are inquiring about and/or require” (triaged health website, ). this resource could be used when moving forward with the desired end state as it may address the goal to establish a ‘live senior healthcare portal’. additional resources such as this that could also be used include and ccac, however study participants identified that these tools need to be reworked so that they are user friendly and have accurate information.  three d’s: the group health centre is currently undertaking a project focusing on assisting physicians and nurses to improve identification and screening of dementia, depression, delirium within elderly care through the development of educational tools and implementation of best practices. projects such as these can be continued when moving forward with the established change as they demonstrate ways to increase stakeholder education and awareness of senior’s needs. summary of section . . - enablers of integration the above section provides a description of the various projects/ relationships that currently exist within the sault ste. marie senior healthcare system that can be used and expanded on when moving forward with the change towards an integrated senior healthcare system. however, as indicated, although these initiatives are a step in the right direction, there continue to be issues within the sault ste. marie senior healthcare system that may impede the change towards the established desired end state. these issues are described below in sections . . and . . . . . local obstacles to integration describing stakeholders’ perception of obstacles to integration is the second step in the key stakeholder analysis portion of the adapted change management framework. obstacles to integration refer to existing behaviours/aspects within the sault ste. marie senior healthcare system that may inhibit change leaders from achieving the vision and goals set out by study participants. it is important to identify and acknowledge perceived obstacles to integration when moving forward with change initiatives to show what issues need to be addressed in order to increase stakeholder readiness for change. participants identified two main obstacles to integration including: organizational silos and inter- organizational/professional philosophical treatment differences. these obstacles to integration demonstrate the issues that are still occurring within the sault ste. marie senior healthcare system despite the existing relationships and projects that were identified as enablers to integration in section . . . these results are described below. . . . organizational silos the main obstacle to integration that study participants identified was ‘organizational silos’. a summary of this obstacle is outlined in figure . figure : organizational silos as an obstacle to integration as depicted in figure , within the sault ste. marie senior healthcare system there are numerous organizations providing care for the same population (as identified in appendix e), however they have different visions, missions, values, strategies, and protocols for delivering this care. as one participant explains: “…everybody probably has the same general agreement about the way things should be, but sometimes… -they’re off doing their own thing based on their own strategy and those strategies don’t necessarily blend” (primary care interview, ). study participants identified that the presence of organizational silos within the sault ste. marie senior healthcare system create obstacles to integration because they perpetuate an environment where there are problems with inter- organizational/cross-sector communication and information sharing, as well as difficulty understanding cross-sector circumstances. these obstacles are described further below:  problems with inter-organizational and cross-sector communication and information sharing: study participants identified that organizational silos contribute to problems with inter-organizational and cross-sector communication and information sharing. for example, stakeholders may find out about various initiatives, projects, funding opportunities, and relationships by happenstance. one participant provides an example: “i don’t know how this is going to work at all. you know, you have one nursing home that has a relationship with the hospital-so they work together-…to enable the nursing home to access the progress notes and consult records and x-ray, etcetera results. so if you’re going to do that, why wouldn’t you obstacle to integration: organizational silos obstacle creates problems: difficulty understanding cross-sector circumstances communication and information sharing problems result in: lack of integrated system planning /service delivery numerous organizations providing care to the same population under different visions, mission, values, strategies, and protocols do it for all of the homes? why do you find out in a meeting that one home has got it and nobody else does? i mean, that’s the frustration in the system” (interview, ). the above experience indicates that there is no formal protocol for information sharing across organizations, even though they are providing the exact same care within the same sector. this difficulty with communication and information indicates that although there are existing positive cross-sector/organization projects and relationships, there continue to be initiatives within the sault ste. marie senior healthcare system that are being implemented in a siloed manner. this acts as an obstacle to achieving the desired end state because it inhibits system-wide planning and initiative implementation. this results in certain organizations having advantages over others, which results in seniors receiving inequitable care across organizations within the same sector.  lack of understanding of inter-organizational circumstances and impact of decisions on other sectors: in addition to the above issues, participants also explained that organizational silos cause obstacles to integration because they create barriers to understanding the impact that decisions made in one sector may have on another. one study participant provides an example: “well, obstacles to integration are staffing models. and partner visions. you know… i’m just going to speak honestly here, but one example, when there’s a director at the (organization omitted) who felt the case-the discharge planning functions were more value-added to the client, she removed the utilization piece from that case reviewer, so they could do more discharge planning. she’s gone, and now someone who’s there… finds utilization more value-added-and one isn’t necessarily better than the other, but it’s shifted the case reviewer’s role, but it has an impact on us, and so sometimes decisions are made in one sector without looking on the impact to the other sectors. just like us, if we decide to standardize our utilization in the community, and anybody that was maybe grandfathered with some previous services is now brought into line with the norm for equity, i’m not saying that person ends up in the hospital, but if they do, we need to understand that that may be having the impact on more people in the hospital. so both ways, sectors need to understand the impacts of their decisions to their partners.” (interview, ). as the study participant identified, decisions that are made in one organization or sector are often made based on the needs of that specific entity. this demonstrates that although there are existing cross- sector improvement projects in place and relationships being built, organizational silos continue to preserve an intra-organizational rather than system method of service delivery and planning. this acts as an obstacle to achieving the established desired end state because in order to have true system planning and integration, the impact of decisions need to be looked at across sectors/organizations to avoid negative ripple effects throughout the system. . . . cross-sector/provider philosophical treatment differences in addition to organizational silos, another obstacle to integration that study participants identified are the philosophical treatment differences among sectors and providers within the sault ste. marie continuum of care. figure provides a summary of this obstacle. figure : cross-sector/professional philosophical treatment differences as an obstacle to integration as depicted in figure , the main treatment differences that study participants identified were among the acute and community sectors/providers in terms of their philosophises on risk management. this difference is described by the following community sector study participant: …and that’s the difference…-there is a higher risk tolerance in the community than there is in the hospital. so the hospital wants everything pretty pretty, and the community is like, this person doesn’t need hour care, they need someone checking in on them regularly throughout the day, but it is two totally different philosophies on risk management (administration focus group, ). obstacle to integration: cross-sector/provider philosophical treatment differences obstacle creates problems: lack of understanding of cross-sector/ provider circumstances problem results in: holding on to clients/ reluctance to transition seniors to appropriate level of care lack of trust among organizations and providers community versus hospital risk management results in: maintenance of organizational/ cross-sector silos results in: lack of true system planning/ service delivery in contrast to the views of the above study participant, a front line service worker provides their insight as to why the acute care sector and staff may be more materialistic in their approach to care: well the hospital, you’re probably going to do more for the senior just because it makes your life easier as a nurse. so in the long term care or alc unit, you’ll go in and you know, give them the proper, give them the medications, maybe do the bath, when really they could be doing that for themselves. because it makes your life on the unit easier, because you have so, you’re taking on more complex patients, you’re dealing with more patients now (front line service worker focus group, ). the above varying views among study participants indicate that service providers from various sectors may not fully understand each other’s situations and why care is being delivered in a certain manner. study participants identified that this lack of understanding of cross-sector/provider circumstances leads to a lack of cross-sector/professional trust among health service providers. this lack of trust causes providers to be reluctant to transition seniors among levels of care. one study participant provides an example: “i tell ya, in my (organization omitted) days, i pulled out - people that were living in the (organization omitted), like living there for years, who absolutely had the ability to live independently and i mean, i damn near had to kidnap them. the ( ‘organization omitted’) said ‘they can’t do that, they’ll be back here in six months’” (administrator focus group, ). as this study participant identifies, providers are reluctant to transition clients from their own level of care because they do not trust the receiving sector/organization to properly care for the senior. this lack of trust perpetuates organizational and cross-sector silos as they continue to provide care within their own realm, even if the level of care that they are providing may not be appropriate for the senior. these issues act as obstacles to achieving the desired end state because they act as barriers to transition among levels of care. therefore, if an umbrella organization was established, would stakeholders even participate in the model? or would philosophical treatment differences stand in the way of allowing seniors to reach the appropriate level of care through a single point of access and system navigation? would it matter if stakeholders were aware of all the existing senior care services in sault ste. marie if these stakeholders don’t trust other providers to care for their patients/clients? these questions demonstrate how the issue of philosophical treatment differences could be a major barrier to achieving the established desired end state, and therefore is an obstacle that will need attention and action by change leaders. summary of section . . - local obstacles to integration the above section depicts the obstacles to integration that exist on the ‘local level’ within the sault ste. marie senior healthcare system. it will be important for change leaders to address these obstacles, as they indicate that the stakeholders within the intended change environment may not fully be ready for the established change direction. however, the identified ‘enablers to integration’ do indicate that stakeholders are capable and able to change, and therefore this behaviour should be harnessed to assist in breaking down the identified obstacles to integration and increasing stakeholder’s readiness for change. the following section describes the ‘high level’ analysis of the ‘local level’ results presented in the above sections. . . high level obstacles to integration-drawing the ‘fault line’ the following section delves deeper into the analysis of the local level results presented in the above sections by comparing participant`s local experiences to the texts identified in chapter . . this analysis has resulted in the finding that there are ‘fault lines’ between certain aspects of what the mohltc and ne lhin intend, and what is actually being experienced by study participants on the front lines. these ‘fault lines’ are found in relation to mohltc and ne lhin funding models; mohltc and ne lhin policy/legislation; and mohltc/ ne lhin politically driven decisions. the following sections provide further explanation of these findings. . . . mohltc/ne lhin funding models with the creation of local health integration networks (lhins) and the continued promotion of integration as the solution to ontario healthcare system fragmentation (ministry of health and long term care- ontario’s action plan for health care, ), the presence of organizational silos seems ironic based on the results within this study that identify organizational silos as an obstacle to integration at the local level. therefore, the question then becomes, why do organizational silos continue to exist? when further analyzing this question, the experiences of study participants reveal that the way the mohltc and ne lhin fund certain programs and services perpetuates the presence of organizational silos through reactive and individualized funding methods. reactive funding is a result of ‘unexpected’ cost savings that arise at the end of the fiscal year. in order to maintain this money within the community, it must be allocated to an initiative or project as quickly as possible so that the mohltc does not claw the money back and place it in a general pot that may be allocated elsewhere in the province. one study participant describes their experience with this method of funding: there’s money in the system maybe by saving the amount of days a person is in a bed at the hospital, so you have all this wealth but they don’t do anything with it until right at the end. then it’s like well now we have $ , what can we do? but it’s too late to do anything. so, there should be more forecasting, if there is going to be a huge savings somewhere in the system, then you should have choices. -but don’t call me on a friday at : pm and say ‘(name omitted) can you put a proposal together by friday at : pm and you know we will see what we can do for you, because we have some extra money’. i put the proposal together and you give me change, what am i going to do with that? you know, so it’s kind of like if you are forecasting better and you see a trend you are going to know that you are going to have some money so that you can take a chance, and you say ‘we are going to have million dollars, do you have a project that you can get going?’ (interview, ). as depicted above, the funder may often reach out to individual organizations that they are aware of (which may not necessarily be the appropriate organization for the funding initiative), and request a quick proposal to ensure that the unexpected funding stays within the community. this method of reactive funding perpetuates organizational silos as it does not allow time to assess the needs of the system as a whole, and determine where funding should be allocated to enhance existing services and create connections across silos. in addition to the reactive funding methods described above, study participants identified that individualized funding methods are also preserving the presence of organizational silos. individualized funding methods are a result of programs and services being funded through the request from the ne lhin for project proposals from individual organizations, rather than requiring that health service providers come together to develop integrated proposals for funding. this method of funding perpetuates organizational silos because it creates an environment of competition and turf building among service providers. one study participant describes their experience: because i’ve sat on a few committees now…-i was very active. good ideas, we were doing things, whatever, and along came a scenario with the money, ok? and this organization wanted to be the one that applied for the funding, and no this one thought they were the best ones to apply for the funding, this one thought they were the best ones to apply for the funding; i finally said ‘i’m going home’, because you know what? nobody’s going to get it. and guess what? it went another six or seven months, they died a natural death. and i’m not saying they weren’t sincere at the table, but i think what it is, is the people that come to the table for those things as part of their job, as part of their mandate, they have to be out there hustling dollars to keep their organization (interview, ). this experience provides an example of how individual organizations were at the same table discussing how to improve care for seniors in an integrated manner, however when a funding opportunity was introduced, this integrated planning was lost. when comparing the above experiences to the promotional material that the mohltc and ne lhin provide to the public through their websites and media releases, the ‘fault line’ can be drawn as the way the mohltc and ne lhin fund the healthcare system does not match what they are portraying to the public/stakeholders. for example, the mohltc promotes that they are: “…working to establish a patient-focused, results-driven, integrated and sustainable publicly funded health system” (mohltc-about the ministry, ), and the ne lhin describes that their reason for being is: “to advance the integration of health care services across northeastern ontario by engaging our local communities” (ne lhin- about us, ). based on the experiences that study participants described above, what the mohltc and ne lhin say is very different from what they actually do, as the way that they fund services and programs maintains the presence of organizational silos which has shown to prevent integrated system planning at the local level. this method of funding at the ‘high level’ maintains an environment of system fragmentation at the ‘local level’ as service providers continue to plan and implement initiatives in an intra- organizational manner in order to gain access to funding. based on this finding, the questions then become: how can integration occur at the ‘local level’ if it is not being supported and demanded through funding methods at the ‘high level? if providers are continuing to get funding while operating in a siloed manner, why would they change their behaviour? . . . mohltc and ne lhin policy/legislation further to the above ‘fault line’, discrepancies have been found between the intentions of legislation that is developed and supported at the ‘high level’ by the mohltc and the ne lhin including the ‘long term care homes act ( ) and the assisted living services for high risk seniors policy ( ), and study participants’ experiences at the ‘local level’. these ‘fault lines’ are described further below: . . . . long term care homes act ( ) the ‘fault line’ between the intentions of the long term care homes act ( ) which was implemented in july and the effect that it is actually having within the sault ste. marie senior healthcare system can be seen through participants’ experiences identified in the ‘system gaps’ section of this chapter. specifically, study participants from the long term care sector explain that the intention of the long term care homes act ( ) has been to increase the quality of care that seniors are receiving, however the idealistic nature of the act is inhibiting administrators and front line service workers’ from providing quality of care for seniors. one study participant explains: “i mean the new long term care act is very idealistic, you can’t argue with it, it’s motherhood and apple pie, but it is really taking away resources from the bedside” (administrative focus group, ). this indicates that in addition to the lack of administrative funding attached to ne lhin programs, the unrealistic nature of the reporting requirements within the ltcha ( ) is also contributing to front line service workers being taken away from providing resident care. further to these issues, study participants also indicated that the increased documentation which is a result of the changes within the ltcha ( ), has taken away the ability of long term care stakeholders to participate in system planning initiatives because of time constraints. the ‘fault line’ can be drawn here as the messaging that the mohltc and ne lhin portray to the public concerning their mission to integrate the ontario healthcare system (mohltc-about the ministry, ; ne lhin-about us, ) contradicts the policy that they implement and support as it takes away from the ability for key stakeholders to participate in system planning initiatives. although study participants explain that they do not believe that this was the intention of the ltcha ( ), they report it as a negative unintended side effect. . . . . assisted living services for high risk seniors policy ( ) when reviewing the local experiences of study participants and comparing them to the assisted living services for high risk seniors policy ( ), the ‘fault line’ can be drawn as the intentions of this policy contradict some of the results that it is producing within the sault ste. marie senior healthcare system. specifically, this policy indicates that its intent is to: enable local communities to address more fully the needs of high risk seniors so that they are able to remain safely at home; expand cost-effective and accessible options for community care; reduce unnecessary and/ or avoidable hospital utilization and wait-times of acute care services, emergency room (er) use, and admission to ltchs; provide local health integration networks (lhins) with the flexibility to adapt to clients’ changing care requirements; and strengthen assisted living services to achieve a more functional continuum of care for ontario’s high risk seniors within each lhin (mohltc- assisted living services for high risk seniors policy, ). although this policy has been successful in increasing services for high risk seniors, it has had two major unintended side effects at the local level including: creating a gap in service for low and medium needs seniors; and creating a healthcare system that does not recognize the importance of senior’s mental well-being. these gaps have been attributed policy influenced cuts to basic in-home care services, and changes to the structure of assisted living service delivery. these side-effects of the policy, although presumably unintended, have created a situation where seniors who were previously able to be maintained in their home with minimal supports, are no longer able to receive those supports. this issue results in these seniors needs escalating at a faster pace, which may cause them to end up in the hospital. once again, this ‘fault line’ between the intentions of policy and the realities of policy shows how the mohltc and the ne lhin say that they are implementing initiatives to improve care for seniors within the ontario healthcare system (ne lhin-value of the ne lhin to fellow northerns, ; mohltc- ontario’s action plan for health care, ), but the legislation/policy that they implement contradicts this promoted goal. . . . . different cross sector legislation further to the above two issues, study participants’ local experiences indicate an additional ‘fault line’ between the mohltc and ne lhin messaging/goals and the sector specific legislation that they implement/support. for example, the long term care sector is guided by the ‘long term care homes act ( )’, hospitals are guided by the ‘public hospitals act’ ( ), and community care access centres are under the ‘community care access corporations act’ ( ). study participants identified that these acts can often contradict one another: “so that’s where the dichotomy sort of comes up between the community care access centre and the hospital, because we’re under two different acts. and they sort of contravene one another” (interview, ). an example of how these two pieces of legislation clash can be seen in the messaging that they require service providers to give to seniors about care options when leaving the acute care sector: “-well, what messages they’re hearing from the hospital, ‘you have to make a choice. and if this bed’s available at this long-term care facility, you must go’. the ccac will come in and say, “well no, you don’t have to go. you have a choice” (interview, ). the ‘fault line’ can be drawn as the different messaging that these two sectors give to seniors contradicts the mohltc and ne lhin goals of service integration and coordination because they create issues with integrated discharge planning. because of legislative contradictions such as these, integrated system planning and initiative implementation can become difficult as each sector is focused on meeting the requirements of their own legislation, thereby promoting intra-sector planning and service delivery methods. . . . mohltc and ne lhin politically driven decisions further to the issues described above, a ‘fault line’ can be drawn between the messaging that the ne lhin expresses about developing system priorities based on local stakeholder engagement (ne lhin- about us, ), and the experiences that study participants have had where system priorities are determined by politically driven decisions. an example of this ‘fault line’ can be seen within the sault ste. marie senior system through the change in the ‘alternative level of care plan for the city of sault ste. marie’ (may, , revised february ). this plan was a collaborative report developed by the members of the alc solutions group which identified a local plan for the transition of funding from institutional to community-based services. however, after the plan was submitted to and approved by the mohltc and the ne lhin there was a change in political priorities which caused the new behavioural supports ontario (bso) initiative to take front stage. without consultation from the alc solutions group, the bso initiative was moved from year four of the plan to year one of the plan in order to provide immediate funding. this resulted in resources being pushed aside that would have ensured a smooth transition for patients from the old acute centre site to the community. one study participant explains: i thought that the day hospital with the occupational therapy and physiotherapy resources might have helped with some of those people, but for all the reasons of political direction and needs i understand that the dollars went to bso instead. but there are still the big concerns about the assisted living resources… (non-participant observation, ). this politically driven decision to change a community based plan which was developed in an integrated manner demonstrates how the ne lhin and the mohltc ask stakeholders to participate in ‘integration’ (ne lhin- we want to hear from you, ), but contradict the notion with their actions. one study participant voices their frustration: you guys did say that you wanted to mention that you weren’t happy with the way that the bso got rolled into it. …if we are going to act as a committee, they have to listen to the committee, they can’t come and change the plan. it is community based, all the community hours into planning this, then they change it. why bother asking us? (non-participant observation, ). this ‘line of fault’ creates a situation where stakeholders may be reluctant to come together to develop plans to improve the sault ste. marie senior healthcare system because they may believe that the mohltc and the ne lhin will end up going in their own direction, regardless of the identified needs of the community. summary of chapter . the above chapter depicts the results of the research conducted within this study including local sault ste. marie senior healthcare system gaps, diversity, enablers and obstacles to integration, as well as the desired end state established by study participants. furthermore, this chapter presented high level obstacles to integration that were uncovered by comparing study participant’s local experiences to texts produced by government bodies. the following chapter will present a discussion of these findings. . discussion this chapter provides a discussion of the study results in relation to how they addressed the thesis objectives. it also provides an evaluation of these results through the conduct of a force field analysis (lewin in schein, ) including a proposed action plan for sault ste. marie senior healthcare system leaders; a discussion of the chasm between macro level activities and micro level experiences; as well as a summary of the process that was used within this study to organize information to assist communities in constructing/selecting an integrated senior healthcare system model. . review of study objectives the overarching goal of this study has been to assist communities that are in need of senior healthcare system integration in developing an understanding of existing system gaps, diversity, and enablers and obstacles to integration within their local environments. this information is meant to accomplish two tasks: ) assist these communities in selecting or constructing a context sensitive integrated senior healthcare system model; and ) assist these communities in understanding the aspects that can be leveraged, and barriers that need to be addressed to enhance the success of the change effort. this process is intended to begin addressing gaps and problems found in literature that evaluates existing integrated senior healthcare system models including: the lack of a description of how to transfer the models to other communities; and difficulties that the models had with stakeholder resistance and environmental inappropriateness. to accomplish this, this study had the following objectives: ) use change management concepts as a lens to depict the current state of a specific community that is in need of an integrated senior healthcare system model. ) format/refine the information gathered from the first objective so it is useful for stakeholders in selecting or constructing a model that meets their specific needs. to achieve these objectives, a change management framework adapted from the literature (figure ) was used to explore the senior healthcare system within sault ste. marie, ontario using an institutional ethnographic approach (smith, ). figure provides an overview of the results of this exploration. figure : overview of the current state of the sault ste. marie senior healthcare system the data within figure , along with the inventory of services that has been developed (appendix e) provides change leaders within sault ste. marie with information that will assist in making informed decisions when moving forward with the established desired end state. to go beyond these results and provide change leaders with additional information, the following section presents an assessment of the driving and restraining forces surrounding the change towards an integrated senior healthcare system model within this community (lewin in schein, ). current state of the sault ste. marie senior healthcare system system gaps health human resources funding system coordination  personal support workers  community pt/ot  in-home care nurses  primary care geriatric specialists  in-home care social workers  geriatric mental health workers  volunteers  lack of administrative funding to fulfill reporting requirements  lack of funding for preventative services for seniors  incompatible sector assessment tools  difficulties with shift from institutional to community- based care vision for change “a system that is designed for seniors, looks at the senior holistically, provides a coordinated single point of access, and recognizes the importance of all levels along the continuum of care”. goals for change develop a sault ste. marie senior healthcare system single point of access umbrella organization/board to:  establish a single point of access and system navigation  implement a mandatory system-wide emr  develop a live senior healthcare portal  ensure system education, awareness, and communication  identify system needs and oversee planning and resource allocation enablers of change  existing cross-sector/ organizational projects/relationships local obstacles to change  organizational silos  philosophical treatment differences high level obstacles to change  funding methods  legislation/policy  politically driven decisions . force field analysis lewin’s force field analysis model (lewin in schein, ) provides a method of assessing the ‘readiness’ of the current sault ste. marie senior healthcare system to accept the change towards an integrated model through the identification of the driving and restraining forces encircling this change. driving forces: “…move toward a positive region and encourage the change to occur. static forces that attempt to maintain the status quo are identified as restraining forces” (bozak, ). figure provides a summary of this assessment. figure : force field analysis driving forces restraining forces c h a n g e t o w a r d s a n in te g r a te d s e n io r h e a lth c a r e s y ste m m o d e l based on the results depicted in figure it is evident that there are many more restraining than driving forces, which indicates that the current sault ste. marie senior healthcare system may not be ready for the change towards an integrated model. to address this problem and establish an environment for successful change: “…the driving forces must be strengthened in favour of the change while the restraining forces are weakened or eliminated” (bozak, ). therefore, to assist in moving forward with the identified vision and goals established by study participants, the following section proposes an action plan that focuses on strengthening the driving forces and weakening the restraining forces that are currently present within the sault ste. marie senior healthcare the system. . moving forward- an action plan for the sault ste. marie senior health care system this section proposes an action plan for moving forward with the change path identified by study participants in chapter . this plan is based on the third and fourth stages of golden’s ( ) healthcare change management framework, and applies a collaborative approach to change by outlining the macro and micro level activities that should occur simultaneously in order for the proposed change to be successful. table provides a visual summary of the action plan. table : sault ste. marie senior health care system action plan stage step micro level macro level stage three part one: broaden support establish project as a priority and change leader selection x x communicate and build change collation x x stage three part two: system redesign create an operational plan and identify of required resources x x establish connections x education and awareness x integrated applications for funding x forecasting of cost savings x reform of existing policy and legislation x x implement, reinforce, and sustain the change implement x x monitor performance x x showcase successes x x reward supporters x x fine-tune systems x x the following section describe table in further detail. . . stage three part one: broaden support the first part of stage three within golden’s ( ) healthcare change management framework focuses on broadening support for the change which includes: establishing the change as a priority; change leader selection; communicating the vision; and building a coalition. the following section provides further description of how to apply these steps at both the micro and macro levels. . . . establish project as a priority and change leader selection:  micro level: the first step to begin moving forward with the identified vision and goals at the micro level is to establish this project as a priority among local level stakeholders. this can be accomplished through the review of this thesis by the alc solutions group. once the review is complete, the group can determine whether to move forward with the identified change design. if the review is favourable, the alc solutions group should establish the project as a priority and begin selecting the change leaders who will drive it forward. as identified in the ‘enablers to integration’ section within the results, there are six different committees that are currently focusing on improving senior healthcare in sault ste. marie. the membership of these committees should be reviewed to determine if there are existing change leaders that can be selected for this system-wide project. if change leaders cannot be pulled from existing committees, an expanded search should be conducted. the ‘change leaders’ who are selected need to be representative of each sector along the continuum of care. they need to have the ability to be ‘system thinkers’ who have significant influence within their respective sectors. once the change leaders are selected, a committee for this project should be formed. this committee will need to be interconnected with the other existing committees within the sault ste. marie senior healthcare system to ensure cooperative planning and communication. the new committee will need to be supported by a ‘project coordinator’ in order to ensure that the project moves forward. it is recommended that community support system navigator fill this role.  macro level: the first step to move this project forward at the macro level will be to ensure that it is established as a priority with the ne lhin and mohltc. this project is aligned with current macro level strategic direction outlined in the following reports: ne lhin - integrated health service plan (ihsp); ontario’s action plan for health care- let’s make healthy change happen ( ); caring for our aging population and addressing alternative level of care ( ); and living longer, living well ( ). once this project is established as a ne lhin priority, a change leader from the ne lhin should be selected to be a part of the committee. . . . communicate vision and build change collation:  micro level: at the micro level, once the change leaders are selected and the committee is formed, the current vision and goals can be refined and expanded. this exercise is important as kotter ( ) explains that the original vision in many change projects is the initial creation of a few key people: “but after the coalition works at it for or or even months, something much better emerges through their tough analytical thinking and a little dreaming”. once the vision and goals are refined, the selected change leaders should begin communicating them to other key stakeholders in order to build a coalition for the change (golden, ). kotter ( ) explains that it is essential to have a powerful collation: “– in terms of titles, information and expertise, reputations and relationships”, as these key stakeholders need to be able to convince other stakeholders that the change is necessary. the coalition and change leaders should continue to communicate the vision and goals through all available methods so that all stakeholders have a clear understanding of the change and why it is occurring (kotter, ). this exercise will assist in increasing support and decreasing resistance among those who will be asked or required to change (golden, ).  macro level: to maintain and encourage ongoing support for the change at the macro level, the selected ne lhin change leader should begin to build a guiding collation for the change within the ne lhin by communicating the revised vision and goals to senior management and other colleagues. this process will ensure that the initiative remains a priority at the macro level and that the necessary connections among existing macro level projects are established. . . stage three part two: system redesign system redesign occurs simultaneously with the process of broadening support. it focuses on operationalizing the selected change design by ensuring that the system: “…is sufficiently aligned to support the change” (golden, ). this is accomplished through the development of an operational plan and the identification of the resources necessary to support the plan. these processes are described further below. . . . create an operational plan and identify required resources creating an operational plan for the change focuses on identifying how the selected change path will become a reality. developing this operational plan will be the responsibility of the selected change leaders and the project coordinator. although the development of this plan occurs primarily at the micro level, it should be reviewed by the ne lhin to ensure that it can be supported through alignment with macro level priorities. golden ( ) explains that the operational plan should include the following elements:  goals and tasks: what is the project trying to achieve and what are the specific tasks that will be undertaken to achieve it? what is the sequence of implementation? what are the timelines and deliverables for each phase of implementation? who is accountable for these tasks?  structure: how will the single point of access umbrella organization/board be organized? is the suggested structure (identified in chapter ) appropriate? does it need to change?  culture and values: what behaviours (culture and value) within the system will need to change in order for the project to be successful? how will this be accomplished?  people and human resource management: will additional human resources be required? how can existing system resources be realigned to support the change? how will stakeholders current work processes need to change in order for this project to be successful? are the necessary resources available?  information and decision support: how will this operational plan be communicated to all stakeholders?  rewards: what will stakeholders gain from this change? how will this value be expressed to them? in addition to the above components, the findings of this study indicate that the following activities should be included within the operational plan in order to take advantage of the driving forces and address the restraining forces that are currently present within the sault ste. marie senior healthcare system.  establish connections: o micro level: as part of the operational plan, the single point of access/umbrella organization should take on the role of beginning to build connections among the existing senior healthcare projects outlined in the ‘enablers to integration’ section of chapter . this is important as study participants have identified that there is duplication in planning within the current system, which has resulted in the inefficient use of existing resources. through the establishment of these connections, the umbrella organization/board can include and leverage existing projects by aligning them with the goal of establishing a single point of access.  education and awareness: o micro level:  community of practice: in order for the single point of access umbrella organization/board to be successful, philosophical treatment differences among acute and community stakeholders will need to be broken down to encourage successful transitions across levels of care. to accomplish this, the literature suggests establishing a ‘community of practice (cop)’ to create opportunities to enhance quality of care among providers through sharing of information and experiences (white et al, ). through cops service providers from different health professions meet to discuss: “current practice and to identify areas for improvement” (white et al, ). this type of platform can serve to strengthen inter-service provider understanding of cross- sector circumstances, which in turn could begin to build trust and communication among these individuals (white et al, ). a specific entity that could assist the single point of access umbrella organization/board in establishing a cop within sault ste. marie is the ‘seniors health knowledge network” (see appendix f for further information about this organization).  inter-service provider training sessions: another activity that will be essential to the success of the single point of access/umbrella organization is the increase of trust among providers in relation to the cross-sector rai assessment tools. therefore, an activity that should be included in the operational plan is inter-organizational/service provider rai training and education sessions (reeves et al, ; suter et al, ). these sessions should focus on creating understanding of cross-sector circumstances in relation to the information that is recorded in the rai assessment tools. for example, long term care providers should attend rai-mds sessions with hospital and community care access centre staff so that service providers can begin to build an understanding of how these assessments are completed in various settings. staff can then provide insight into what information is needed in order for successful transfers to occur across sectors.  community education conference: in addition to the above activities, the success of the single point of access umbrella organization/board will be enhanced by increasing awareness of the services that currently exist within the sault ste. marie senior healthcare system. to accomplish this, the operational plan should include a ‘community education conference’ where stakeholders from across the system are able to present and share information about their existing services. during this event, a ‘brainstorming’ period may want to be held where stakeholders are able to sit together in groups and come with up ideas for cross-sector/organization linkage. the inventory of services that has been produced through this study (appendix e) can be used as an information starting point to organize this event. these activities may assist in increasing system coordination, thereby weakening this restraining force.  integrated applications for funding: o macro level: to weaken the presence of organizational silos and increase the success of the single point of access umbrella organization/board, the ne lhin may want to consider asking organizations to develop integrated applications for funding when new initiatives are implemented within the system. through this activity, organizations may achieve a greater understanding of how their services inter-connect, while at the same time, being able to obtain funding to implement initiatives that will assist in making these connections a reality.  forecasting of cost savings: o macro level: the ne lhin may also want to implement a process that forecasts the estimated cost savings that will be realized at the end of each fiscal year within the sault ste. marie senior healthcare system. this information would allow macro level system planners to be proactive in the reinvestment of the funding within the community. this proactive approach would enable the assessment of the system as a whole, which could result in funding of initiatives that would move the integration of the system forward. the single point of access umbrella organization/board will be an excellent resource that the ne lhin could use to determine where the additional funding could applied, as this organization would be responsible for identifying local system-wide gaps and potential integration initiatives to address them.  reform of existing policy and legislation: o micro and macro level: using the data produced within this study, the single point of access umbrella organization/board should take on the role of alerting the mohltc about the issues that the ltcha ( ) and the assisted living services for high risk seniors policy ( ) are causing on the front lines. it will be important for sault ste. marie change leaders to bring these issues forward in a united manner, indicating that it is not just one organization or service provider that is experiencing them. this united voice may have more impact on the willingness of the mohltc to review and revise the policies. once the operational plan is developed and approved at both the micro and macro levels, the process of implementation and sustainability begins. the following section describes the activities involved in this process. . . implement, reinforce, and sustain the change the fourth stage within golden’s ( ) healthcare change management framework focuses on implementing, reinforcing, and sustaining the change. because establishing a single point of access umbrella organization/board is a large system wide initiative, the tasks and activities outlined in the operational plan will need to be implemented in phases to ensure proper uptake by all stakeholders. it will be important to implement ‘quick wins’ first, so that stakeholders are able to see the valuable impact of the change right away. this recognition of value will increase buy-in to the initiative and allow leaders to move forward with larger portions of the change as time goes on. when a phase is successfully implemented, it will be important to showcase successes at both the micro and macro levels to continue to broaden support for the initiative. stakeholders who have participated in the success of the change should be rewarded to encourage similar behaviour in future phases. after each phase of implementation, the process should be evaluated and adjustments made according to the needs of the stakeholders. section . describes the steps that change leaders in sault ste. marie should embark upon in order to proceed with the operationalization of the vision and goals identified by participants within this study. although this action plan will assist stakeholders in achieving the desired end state, the significance of the macro level obstacles to integration need to be recognized as they may be the largest issue that change leaders will have to overcome. the following section provides further insight into this issue. . the macro-micro chasm within section . , many of the identified restraining forces to change and the suggestions for addressing them are commonly found in change and integration literature (hollander, ; kotter, ; suter et al, ). what is lacking in this body of knowledge is information that provides detailed examples of some of the changes that need to occur at the macro level in order for successful integration to be accomplished at the micro level (hollander, ; kotter, ; suter et al, ). this study extends this knowledge through the ‘fault lines’ that were uncovered in relation to the discrepancies between study participants’ experiences and the texts that are produced by government bodies. these findings indicate that macro level activities are continuing to preserve the following obstacles to integration at the local level: ) local organizational/cross-sector silos are being maintained though macro level funding methods; ) implementation/ support of specific legislation/policy is creating continuity of care issues at the local level; and ) politically driven decisions are impeding local integrated planning initiatives. the creation and maintenance of the above local obstacles to integration through high level activities indicates that there may be a lack of integrated system planning at the mohltc and ne lhin level, as some of the decisions that they are making are causing negative ripple effects throughout the micro system. based on this insight, the question then becomes: “how can you have an integrated micro system when you don’t have integrated planning at the macro level?” the answer to this question can be mirrored in the following quote from kotter ( ): “nothing undermines change more than behaviour by important individuals that is inconsistent with their words”. this meaning that the mohltc and ne lhin need to ‘walk the walk’ in terms of integrated macro level planning and initiative implementation in order to create an environment where integration can successful occur at the local level. without this macro level change, it will be difficult to break down the local barriers to integration as ‘integration behaviour’ is not a requirement to receive funding, continue to exist as an organization, or deliver care within the present micro environment. rather, the current reward system continues to preserve a local behaviour of intra- organizational planning and service delivery, and as wilson ( ) explains, without a rewards system that reinforces the desired behaviour, change is not likely to occur. figure provides a summary of this problem. figure : how macro level activities impede micro level integration capability . solutions to the macro-micro chasm to begin addressing the problem outlined in figure , the suggestions for the mohtlc and ne lhin presented in the section . may be a possible starting point. however, the questions become: “how easy is it to create change at the macro level”? and “what are the barriers to change?” one thing that needs to be taken into consideration when exploring these questions is the notion that the ontario healthcare system is rooted in a four year political cycle. this means that every four years there is the potential that the political party in power may change, which means political priorities will also change (joyce, ). for example, under the current government, ‘ontario’s action plan for health care” ( ) identifies that the mohltc should focus on system integration through the reform of the lhins. however, what will happen if this party gets voted out and the conservatives come into power? will the focus of ‘integration through the lhins’ be lost? based on current media, the answer to this question is ‘yes’ as the conservatives state that: “the province should get rid of them, along with , “middle managers,” and use that money to hire more doctors and nurses” (cbc news, september ). therefore, the significant investment that the current government has made in the lhins will be lost. this example indicates that the macro level healthcare system is an environment of constant change and uncertainty, and because of this, the changes suggested within this study may be mohltc/ ne lhin funding model mohltc/ ne lhin policy/ legislation mohltc/ ne lhin politically driven decisions create barriers to integration at local level organizational silos gaps in continuity of care gaps in local system planning local barriers to integration indicate lack of integrated system planning at the macro level difficult to achieve. as kotter ( ) explains, successful change takes time: “until changes sink deeply into a company’s culture, a process that can take five to ten years, new approaches are fragile and subject to regression”. because ontario healthcare system costs are consuming the majority of the current budget (commission on the reform of ontario’s public services (drummond report), ), parties who are attempting to gain or maintain power within this four year political cycle continue to use it as their main bargaining chip for voter affection. the new democratic party (ndp) says they will: “ensure the system is sustainable” (ndp, ), the liberals say they will build a: “successful aging at home strategy to reform the health care system” (forward together, ), and the conservatives say they will: “…enhance patient quality and satisfaction, improve the health of the population” (paths to prosperity, ). however, if these political parties truly believe in the words that they are saying, wouldn’t they work together to create a long-term consistent plan for sustainable healthcare in ontario that is not influenced by political will, but is rooted in the healthcare needs of ontarians? this long term plan is exactly what has been suggested by the drummond report ( ) which explains that healthcare reform needs to include financial incentives from the government that will encourage change towards integration, and that the first step to doing this is: “…a long-term view. the government must set out a -year plan with a vision that all ontarians can understand and accept as both necessary and desirable—a plan that will, though it involves tough decisions in the short term, deliver a superior health care system down the road”. this type of plan must transcend the political nature of the healthcare system and be supported by all parties to ensure that change towards integration can be successfully sustained over time at both the micro and macro levels. the above sections describe the complexity of change and integration within healthcare by presenting in-depth information about the current state of the sault ste. marie senior healthcare system at both the local and high levels. this information will assist change leaders in understanding the issues that should be taken into consideration when moving forward with the development and implementation of the established desired end state. the approach used within this study to gather and organize this information may be a process that could be applied by other communities who are in need of senior healthcare system integration. in light of this, the following section presents a general overview of the study phases. . general approach for organizing information for senior healthcare system model construction/selection this section outlines the general approach that was used within this study to collect and organize information to assist in making informed decisions during senior healthcare system model selection/construction (figure ). figure : general approach for organizing information for senior healthcare system model construction/selection although the approach depicted in figure is not superior to others suggested within the literature (golden, ; balogun and hailey, ), this study has provided an in-depth example of how it has been applied in a real life setting. therefore, this thesis may act as useful road map for other communities who are interested in gathering and organizing information that will assist them in making an informed decision when selecting or constructing an integrated senior healthcare system model. . - conclusion the need for integration within senior healthcare systems has received much attention and support from canadian and international researchers. as a result, several integrated senior healthcare system models have been developed such as prisma, sipa, pace, and s/hmo. although these models have been somewhat effective in increasing continuity of care, they did not perform as well as expected due implementation problems relating to stakeholder resistance and environmental inappropriateness. furthermore, descriptions of these models currently lack information that explains how they were selected or constructed for the specific communities that they were implemented within. these issues create barriers for regions that are in need of a model to support senior healthcare system integration, as they lack an implementation road map to follow that describes how to overcome the problems that existing models have faced. to address these issues, and to assist the community of sault ste. marie in making an informed decision when moving forward with the change towards an integrated senior healthcare system model, this study accomplished the following: . identified sault ste. marie senior healthcare system gaps, diversity, and obstacles and enablers to integration. . established a preliminary vision and goals for an integrated senior healthcare system within this community. . presented a force field analysis that identified the specific aspects within this system that can be leveraged, and the barriers that need to be addressed to encourage a successful change effort. . proposed an action plan that outlines steps that sault ste. marie change leaders can follow to implement and sustain the selected change path. . uncovered macro level obstacles to integration that are currently impeding the change towards an integrated senior healthcare system model in sault ste. marie. . provided a general approach to assist in integrated senior healthcare system model selection/construction that can be adapted to other communities in need of this change. through the above research, this study has provided in-depth examples of the challenges to achieving integration within healthcare. using institutional ethnography as a method of inquiry allowed me to gain further insight into these challenges and provide richer descriptions of them by rooting the research in the experiences of study participants, and situating myself within the environment under study. . research implications through the connection of the trans-local relations of study participant’s experiences within the sault ste. marie senior healthcare system, this thesis has provided in-depth descriptions of system gaps, enablers, and obstacles integration. through these descriptions, this research offers a deeper understanding of these aspects than is present within the current literature (hollander, ; suter et al, ) by adding context to the notion of integration through the application of a diagnostic change process in a real life setting. furthermore, by taking study participant’s experiences and comparing them to texts produced by the mohltc and the ne lhin, this study provided an in-depth analysis of some of the macro level activities that are impeding healthcare integration at the local level. because many of the identified obstacles to integration within this study are common in the literature (hollander, ; suter et al, ), it can be assumed that the same type of problems will be found in other communities. however, what would be interesting to explore is the presence of macro level obstacles to integration in other communities, as the literature indicates that ‘politics’ can be a barrier to change (joyce, ), but lacks in-depth descriptions or examples that explain why. questions to ask in future research might include: would the macro level obstacles experienced by study participants be mirrored in other communities? would a larger urban setting have different experiences than the smaller community of sault ste. marie? are the mohltc and ne lhin aware of the impact that some of their decisions are having on the front lines? . stakeholder implications this thesis has produced rich information that will assist the community of sault ste. marie in making informed decisions when moving forward with the change towards an integrated senior healthcare system model. through this research, study participants identified the following vision and goals to direct this initiative: . vision: “a system that is designed for seniors, looks at the senior holistically, provides a coordinated single point of access, and recognizes the importance of all levels along the continuum of care”. . goals: to achieve the above vision, an umbrella organization/board should be created that would provide direction to all organizations and stakeholders within the sault ste. marie continuum of care through: o the establishment of a single point of access and system navigation; o the implementation of a mandatory system-wide electronic medical record; o the development of a live senior healthcare portal; o system education, awareness, and communication; and o system needs identification, planning, and resource allocation. in addition to the above recommendations from study participants, further assessment of the driving and restraining forces to change within the sault ste. marie senior healthcare system resulted in the following recommendations for change leaders: . establish the project as a priority and select change leaders; . communicate and build a change collation; . create an operational plan and identify required resources; . establish connections among existing senior healthcare relationships/projects; . create a community of practice and hold a community education event to increase awareness and understanding of existing services and delivery methods among stakeholders; . the ne lhin should require integrated applications for project funding from senior healthcare organizations to promote an environment that encourages ‘integration behaviour’; . the ne lhin should begin forecasting potential year end cost savings to ensure the proactive use of funds; . sault ste. marie change leaders should alert the mohltc about the issues that existing legislation is causing on the front lines; and . implement, reinforce, and sustain the change by monitoring performance, showcasing successes, rewarding supporters, and fine-tuning systems. further to the above information, stakeholders within the community of sault ste. marie now have access to an inventory of their existing services. this inventory should be further analyzed to determine how the current system can be realigned using their existing resources as efficiently and effectively as possible (balogun and hailey, ). this study can also be beneficial to stakeholders outside the community of sault ste. marie who are in need of senior healthcare system integration as it has provided the following: ) identified areas to explore when organizing information to select/construct the appropriate integrated senior healthcare system model. for example, exploring the intended change environment and stakeholders within that environment. ) illuminated the specific information that should be extracted from the identified areas. for example, using a change management lens to depict the diversity, capability of stakeholders to manage the change, and stakeholders’ readiness for change. ) demonstrated how to increase readiness for the change towards an integrated senior healthcare system model during the diagnostic phase of this change by involving stakeholders in the process. . policy implications the results of this study have identified that macro level activities within the ontario healthcare system are impeding integration at the local level by preserving organizational silos, creating continuity of care issues, and obstructing local integrated planning. through the identification of these issues, this study has been able to provide specific examples that that can used to describe the problems to the mohltc and the ne lhin. it is the hope that through this understanding, it will become clear that the ontario healthcare system requires a long term political vision and not one that is continual influenced by political upheaval. . patients, families, community implications many communities within canada are still in need of continuity among senior healthcare services to increase quality of patient care, access to care, and patient flow through the various levels of care (macadam, ). this study has produced an inventory of services that depicts the general organization of the sault ste. marie senior healthcare system which may assist patients, their families, and members of the community in navigating that system. this ability to navigate the system may create awareness of what services exist along the continuum of care, which may assist in helping system users to find the appropriate level of care for their needs rather than going to the hospital for these services. . limitations this thesis has several limitations that should be noted. first, the data collected within this study is only a snapshot in time of the experiences and beliefs of stakeholders with the sault ste. marie senior healthcare system. overtime, as situations change, the beliefs and experiences of stakeholders will change as well. therefore, before stakeholders use the data within this study, it may be beneficial to review it again to ensure that it is still relevant to the current situation. a further limitation of this study is the limited number of participants within the administrative focus group. although this session provided rich data that confirmed much of the results from the key informant interviews, it would have been beneficial to have all of the members of the alc solutions group there to provide their input. furthermore, this study did not include all stakeholder groups that would be affected by the change towards an integrated senior healthcare system model. groups that were not consulted include government officials, patients/clients, and friends/families. therefore, it would be beneficial to review the results of this thesis with these other stakeholder groups to determine common and diverging experiences. specifically in relation to patients/clients, the city of sault ste. marie is currently attempting to achieve ‘age friendly’ status from the world health organization, and has conducted a study with seniors which reviewed their experiences with the current healthcare system. it would be beneficial to do a cross analysis of the results these two projects. . future areas of research to build on the results of this study, three future areas for research should be considered. the first being the exploration of macro level activities that are impeding integration within other communities. the institutional ethnographic approach of drawing ‘fault lines’ is an excellent way to identify these macro activities through the analysis of local stakeholders’ experiences in relation to text produced by government bodies. the second area for future research could be to apply the approach summarized in figure within other communities that are in need of an integrated senior healthcare system model and compare the results to those within this thesis. the third area for future research would be to actually use the results within this study to implement the established desired end state in the sault ste. marie senior healthcare system. for example, the inventory of services could be used to develop a model of service delivery under the new umbrella organization. furthermore, the results of the force field analysis could be used to develop a strategic plan for model implementation. these implementation processes could be studied and reviewed to determine if the results of this thesis actually assisted in decreasing stakeholder resistance and environmental inappropriateness. . reflection of contributions this thesis has provided in-depth insight into the experiences that administrative and front line stakeholders are having within the current healthcare climate. reflecting on these experiences has resulted in adding context to the ideal of integration by providing real life examples of how this change can impact stakeholders. although this thesis resulted in the identification of many barriers to integration at both the micro and macro levels, it also demonstrates the commitment and drive of stakeholders to improve the current healthcare system for the benefit of their clients/patients. when moving forward, we need to recognize and leverage these activities through appropriate reward systems and integrated planning at the macro level. those who spend their everyday lives working with seniors deserve a healthcare system that allows them to do their jobs more effectively in order to provide the best possible care for ontario’s aging population. references 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( ). “caring for our aging population and addressing alternative level of care: report submitting to minister of health and long term care”. retrieved on may , from http://www.homecareontario.ca/documanager/files/news/report--walker_ -- ontario.pdf. we care health services. ( ). “health at home services”. we care health services. retrieved on march th , from http://www.wecare.ca/senior-home-care-services. we care health services. ( ). “health in the community services”. we care health services. retrieved on march th , from http://www.wecare.ca/community-health-care- services. white, d., suter, e., parboosingh, j, and taylor, e. ( ). “communities of practice: creating opportunities to enhance quality of care and safe practices”. healthcare quarterly (sp): - . wilson, t. b. ( ). “utilizing reward systems to mobilize change”. quality management in healthcare: ( ): - . http://www.sjhc.london.on.ca/parkwood/programs/sgs/sgs.htm http://www.superiorfht.ca/index.php http://www.von.ca/en/services/program_listing.aspx?cat= http://www.homecareontario.ca/documanager/files/news/report--walker_ --ontario.pdf http://www.homecareontario.ca/documanager/files/news/report--walker_ --ontario.pdf http://www.wecare.ca/senior-home-care-services http://www.wecare.ca/community-health-care-services http://www.wecare.ca/community-health-care-services appendix a: ethics approval letters university of ottawa research ethics board joint group health centre/sault area hospital research ethics board february , ms. jennifer mckenzie, msc health systems candidate telfer school of management university of ottawa laurier avenue east ottawa, on k n n dear ms. mckenzie; the joint group health centre/sault area hospital research ethics board met on january th , to review the study identified as change and integration in senior healthcare systems: the case of sault ste. marie. the letter of information: semi-structured interview, letter of information: focus groups, focus group guide received unconditional, unanimous, full board approval. conditional approval was given for the joint group health centre/sault area hospital research ethics board protocol, the semi-structured interview protocol, semi-structured interview consent form, and the focus group consent form upon the following changes. addition of the contact information below to the: semi-structured interview consent form, and the focus group consent form: insert on the last page, prior to signatures.  if you have any questions about your rights as a research participant or the conduct of the study you may contact “(omitted for privacy reasons). correction of the word ‘confidentially’ to ‘confidentiality’ in locations: . semi-structured interview consent form:  first page under “risks:” at the end of the paragraph: “…your organization as described in the ‘confidentially “confidentiality” and anonymity’ section below.”  second page under “confidentiality and anonymity” “the confidentially “confidentiality” of the information that you share will be ensured… . focus group consent form:  under “confidentiality and anonymity” within the paragraph: … “the confidentially “confidentiality” of the information that you share will be ensured… . page of the “joint group health centre/sault area hospital research ethics board protocol”  under “focus group:” while ‘confidentially’ “confidentiality” cannot be guaranteed… the chairperson of the joint ghc/sah research ethics board has received the above- submitted revisions. the conditions for approval have been met and expedited approval has been given for the joint group health centre/sault area hospital research ethics board protocol version , january , , semi-structured interview consent form version january , , and focus group consent form version january , . approval is valid for the period of one year ending january , . no changes, amendments or addenda may be made in the protocol or the consent form without the research ethics board review and approval. the joint group health centre/sault area hospital research ethics board is constituted and functions in accordance with the ich gcp and the tri-council policy statement guidelines. yours sincerely, dr. brian mitchell, delegated chair joint group health centre/sault area hospital research ethics board bm/ml north east community health network ethics committee approval appendix b: letters of information and consent to participate forms non-participant observation recruitment and consent forms semi-structured interviews recruitment and consent forms administrator focus group recruitment and consent forms front line service worker focus group recruitment and consent forms appendix c: non-participant observation field note collection tool date and time: of observation location: of observation alc solutions group members present: name organization sector field notes: notes were taken pertaining to each theme listed below:  system gaps  vision for an integrated sault ste. marie senior healthcare system  goals to achieve integrated within sault ste. marie`s senior healthcare system  information about existing services within the sault ste. marie senior healthcare system  enablers of sault ste. marie senior healthcare system integration  obstacles to sault ste. marie senior healthcare system integration researcher`s observation memos: additional thoughts that were noted in relation to the above themes during observation period. appendix d: semi-structured interview protocol study title: change and integration in senior health care systems: the case of sault ste. marie primary investigator: jennifer mckenzie interview purpose: the purpose of this interview is to gather specific information about your perspective of integration within sault ste. marie’s senior health care system. i am interested in gathering information about where you think gaps in services exist, what your vision for a future model of integrated senior care would look like, and measureable goals to achieve this vision. in addition, i am interested in gathering information about the function of your organization and the specific services that it provides, as well as any enablers and/or obstacles to integration that you experience. this interview will be audio recorded to ensure accuracy of transcription, however if at any time during the interview you would like me to turn the recorder off, please let me know and i will do so. request for further documentation: any extra documentation that you can provide concerning the function of your organization, the services that you provide, as well as the policies that your organization is guided by would be greatly appreciated. section one: interviewee background information . this first set of questions will focus on your position within this organization. ) what is your current position within this organization?  guides/probes: o what are your responsibilities? ) how long have you been in this position? ) how did you come into this position? section two: organization background information . the purpose of this next set of questions is to allow me to get a sense of your organization. ) how do you determine what services you will provide within your organization?  guides/probes: o ne lhin guidelines o mohltc guidelines o patient demands o community demands ) how is your organization funded?  guides/probes: o ne lhin o moh o fundraising o fee for service ) how do you refer to the people that you provide services to? section three: patient needs assessment process . the purpose of the next set of questions is to understand how client’s needs are determined. ) how do you determine which services your (clients, patients, customers) receive?  guides/probes: o needs assessment (internal/external) o no assessment section four: services and programs provided within the organization . the next set of questions is focused on creating a detailed inventory of all of the services that are provided by your organization. if you could provide extra documentation concerning your services and programs it would be greatly appreciated. ) please describe the services that are provided within your organization.  guides/probes for each services mentioned: o does your organization or an outside organization administer these services? o how do clients get referred to this specific service? o do you know of any other organization in sault ste. marie that provides this service? ) how many (patients, clients, customers) do you currently have within your organization? ) is there a waiting list? section five: service/performance gaps, vision and measurable goals for an integrated senior health care system model . the next set of questions will focus on illuminating the gaps that you see in the sault ste. marie senior health care system, illuminating your vision for an integrated senior health care system model to fill these gaps, and establishing measurable goals to reach this vision. ) based on your experiences, what are some of the major gaps in accordance to continuity of services within sault ste. marie’s senior health care system? ) how would you like to see the sault ste. marie senior health care system change?  guides/probes: o do you believe integration of senior health care services could assist in filling the gaps that you mentioned above? o if so, how? o if not, what approach do you think should be taken to fill the above gaps? ) what steps to you think should be taken to achieve the changes that you suggested in the previous question? section six: enablers and obstacles to integration . this next set of questions will focus on the enablers and obstacles to integration that you experience within sault ste. marie’s senior health care system. ) do you believe that your (patients, clients, customers) would benefit from integrating the services that your organization offers and other services in the community?  guides/probes: o if so, how do you think it would benefit them? o if no, why do you think it would not benefit them? ) based on your experiences, what are some of the enablers of integration within sault ste. marie’s senior health care system? ) based on your experiences, what are some of the obstacles of integration within sault ste. marie’s senior health care system? section seven: conclusion ) what should i have asked that i didn’t think to ask? ) may i contact you in the future if i have any further questions? ) would you like a copy of the transcript? should i send it to you via email? ) what other administrators of senior health care organization do you think should be involved in this study?  guides/probes: o contact information thank you for your participation! appendix e: inventory of sault ste. marie senior healthcare system programs and services description of document: this document provides an overview of the services that are available to seniors in sault ste. marie, ontario. the services are organized under the following sectors: acute care, long term care, retirement residences, independent living affordable seniors apartments, assisted living services, in-home care services, community support services, primary care/allied health/specialized services, and system navigation/planning. each sector begins with a visual map that summarizes the organizations that deliver care within the sector, and follows with an inventory that provides a description of each of the services delivered by the organizations within the visual map. table of contents # sector map/inventory organization page number acute care map inventory sault area hospital long term care map inventory extendicare-tendercare extendicare- van daele manor f.j davey home mauno kaihla koti nursing home extendicare great northern retirement residences map inventory collegiate heights great northern retirement residence pathways retirement residence independent living affordable seniors apartments map inventory italian housing corporation of sault ste. marie- villa santa maria lions club of sault ste. marie housing corporation suomi eesti maja (ontario finnish rest home association) st. gregory’s seniors citizens non-profit homes of sault ste. marie sault ste. marie housing corporation- bay street sault ste. marie housing corporation- chapple heights sault ste. marie housing corporation- chapple street sault ste. marie housing corporation- st. georges ave. east sault ste. marie housing corporation- st. villa vista assisted living services map inventory red cross sault ste. marie and district branch- community health services kotitalo (ontario finnish resthome association) ontario march of dimes- sault ste. marie in-home care services map inventory north east community care access centre revera home health sault ste. marie victoria order of nurses- algoma branch canadian red cross- sault ste. marie and district branch bayshore home health care- sault ste. marie f.j. davey home shoppers home health care- sault ste. marie we care home health services- sault ste. marie branch alzheimer society - sault ste. marie and algoma district community support services map inventory transportation public works and transportation- transit services canadian cancer society - algoma unit canadian red cross - sault ste marie and district branch services for seniors with specific needs alzheimer society - sault ste. marie and algoma district sault area hospital seniors mental health services canadian cancer society - algoma unit emergency planning vulnerable persons registry adult day care f.j. davey home victoria order of nurses- algoma branch social/recreational senior citizens' drop-in centre steelton senior citizens' drop-in centre royal canadian legion, branch education, awareness, prevention we care home health services- sault ste. marie branch victoria order of nurses- algoma branch algoma public health primary care/allied health/specialized services map inventory pharmacy shoppers home health care- sault ste. marie metro pharmacy- northern avenue metro pharmacy- churchill plaza rexall- trunk road rexall- east street rexall- second line west rexall- second line west ideal ida drug mart- wellington street w market mall ida pharmacy medical centre ida pharmacy- queen street e the medicine shoppe- second line w merrett’s ida- wellington street w prescription centre (sault) ltd.- queen street e rome’s drugstore pharmacy- great northern road shopper’s drug mart - cambrian mall shopper’s drug mart - second line station mall ida drug mart wal-mart pharmacy- great northern road wellington square drug mart ida group health centre-mcnabb allied health/primary care group health centre algoma nurse practitioner-led clinic sault care walk in clinic superior family health team baawaating family health team sault area hospital walk-in clinic (fast track) geriatric specialist services north east specialized geriatric services group health centre public health algoma public health system navigation/ planning map inventory system navigation north east community care access centre system planning north east local health integration network sector : acute care services map acute care services organization: sault area hospital senior specific services outpatient services inpatient services community care access centre case manager geriatric emergency management home first north east joint assessment centre emergency services complex continuing care intensive care unit diagnostic imaging ambulatory care unit respiratory therapy surgical services physiotherapy occupational therapy hand program outpatient physiotherapy cancer care centre renal dialysis foot clinic sector : acute care services inventory acute care organization: sault area hospital address: phone: - - hours of operation: / great northern rd n fax: - - (unless otherwise stated) sault ste. marie, on email: publicaffairs@sah.on.ca p a a website: www.sah.on.ca senior specific services service description community care access centre (ccac) case manager the ccac case managers work in the emergency department to provide information to the physician about the services that patients are already accessing within the community, and/or to determine what services can be put in place to allow the patient to be safely discharged back into to the community. geriatric emergency management (gem) nurse this service is for patients over years of age, or between the age of and who are presenting at the emergency department with an age- related diagnosis. the gem nurse has a specific assessment tool to determine how at risk the patients are and what services they may need. they also work closely with the ccac case managers to determine what services the patient is already accessing in the community, and what community services can be put in place to allow the patient to be safely discharged back into the community. home first when a person enters a hospital with an acute episode, every effort is made to ensure adequate resources are in place to support the person to ultimately go home on discharge. only when returning home with care is not possible or safe to do so, are other options considered (ne lhin- home first, ). inpatient services service description ambulatory care unit referral: the acu operates completely on a referral basis, and appointments to all clinics are made directly through the physicians’ offices. patients do not directly book appointments with the acu. hours: hours of operation of the acu depend on volume and the day of the week, but generally reception is open from : am to : pm monday to friday. individual clinics within the acu operate on their own schedules the ambulatory care unit (acu) at sault area hospital provides services for eight separate clinics: colposcopy; cystoscopy; endoscopy; medical surgical (minor medical/surgical procedures); minor procedures clinic; ophthalmology; orthopedic clinic; pre-admission (pre-surgery preparation, diagnostics and patient education). specialists at each clinic rely on the acu to coordinate a variety of sault area hospital resources including nursing and support staff, special equipment and examination rooms, x-ray, and lab tests for procedures that need to be performed in a hospital setting. the acu is primarily an outpatient unit for patients who do not require admission for their procedures and tests. diagnostic imaging the department of diagnostic imaging includes x-ray, ultrasound, computerized tomography scan (ct scan), magnetic resonance imaging (mri), mammography, nuclear medicine and angiography. the diagnostic imaging department performs more than , exams yearly. no analog film is used in the department. all diagnostic equipment is capable of digital imaging with the results viewed on computers. this process allows for all images to be sent from the diagnostic imaging department to all the other departments throughout the sault area hospital for instant viewing. intensive care unit caring for the critical patient: care in the intensive care unit is provided by a multidisciplinary team, which is composed of specially trained physicians, nurses, and other professionals. each professional brings his or her particular expertise to the team, collaborating on a plan of care and treatment for each patient, based upon his or her individual needs and conditions. family of critical patients: the intensive care unit care team also provides support for families of critically ill patients. we know that being in the intensive care unit, or having a relative in in critical condition is a frightening and sometimes overwhelming emotional experience. you want to know what is happening, and what to expect. as an important part of our care, we try to make ourselves as accessible to you as possible, listen to your concerns and answer your questions. we consider you a team partner, and will communicate with you on your relative’s condition, changes and ongoing plans. complex continuing care this service is for patients who have ongoing complex healthcare needs that cannot be addressed through community or long term care services. for example, patients who require long term iv therapy; patients with severe responsive behaviours; etc. emergency services sault area hospital’s emergency department and fast track clinic treat over , patients per year. on average, almost patients come through our emergency doors every day. we are here to care for you when you need it the most – during an emergency. in the emergency department, patients who are the sickest are treated first. less urgent patients are sent to the fast track clinic for treatment where they are usually seen in order of their arrival. north east joint assessment centre (ne jac) the nejac (north eastern joint assessment centre) is part of the surgical program at sah. nejac is a lhin (local health integration network) sponsored initiative, in cooperation with the ontario wait times strategy. the main goal of the program is to decrease wait times for patients awaiting hip and knee replacement surgery. under the new system, patients needing an orthopedic consult for hip or knee replacement will be directed to nejac by their family physician, rather than directly to the orthopedic surgeons as is currently the practice. during the assessment centre visit, patients will receive a comprehensive assessment by an advanced practice physiotherapist (app). the app, who has received specialized training in the assessment of joint replacement candidates, will act as a liaison between the surgeon and the family physician. the nejac process will ensure that patients get on the right treatment path faster. approximately - % of patients are not quite ready for the hip/knee replacement surgery and the app will help manage these patients through more conservative management options such as physiotherapy. the remaining patients will be referred to the orthopedic surgeons for either medical management or joint replacement surgery. surgical patients will be seen by the surgeons in a more timely fashion, to discuss the next steps. respiratory therapy contact: main respiratory therapy dept. - - ext. pulmonary function lab - - ext. . hours: respiratory therapy hours/day, days per week, days per year. pulmonary function lab : - : monday – friday. the respiratory therapy department provides hours service to patients with respiratory illness. this includes mechanically ventilated patients in critical care, neonatal intensive care and emergency. as part of the multidisciplinary team, we are involved with all patient populations in all areas of the hospital including labour and delivery, medical units, surgical units, pediatrics, critical care, nicu, emergency and long term care units. by performing various diagnostic testing, patient assessment, and evidence based treatments we help patients understand and overcome their symptoms and disease process. the pulmonary function lab performs in depth lung studies on both inpatients and outpatients including spirometry, diffusion capacity and lung volumes using state of the art diagnostic tools. surgical services the inpatient surgical service provides comprehensive care delivered by a skilled team of physicians, nurses, physiotherapists, occupational therapists, dietitians, respiratory therapists, social workers, utilization co- ordinators, pastoral care and other support staff. the service promotes an interdisciplinary learning environment, often teaching a variety of students from medical residency, nursing, respiratory, physiotherapy and ambulance programs. these students are enrolled from a variety of university and colleges throughout the community, region and province. we work closely with our community partners to ensure that services we provide are meeting the needs of the community and organization. through the planning and providing of both preoperative and postoperative assessments, patients will have a positive outcome. physiotherapy physiotherapists are members of the college of physiotherapists of ontario. physiotherapists manage and prevent many physical problems caused by trauma, illness, disease, sport and work related injury, aging and long periods of inactivity. the physiotherapist has a number of roles in the process of rehabilitation which include:  performing neuromuscular assessments related to patient function and potential for recovery  performing initial assessments regarding range of motion, strength, mobility aids, assistance required and patient safety during ambulation, stairs and functional skills  provide gait and balance training  prescribe and utilize electrotherapeutic modalities as required  assign patients to physiotherapy assistant as required  provide hands on manual therapy  provide physiotherapy outpatient services in both hand and general outpatients for clients with a variety of diagnoses including post- surgical, post-fractures, amputees, post-stroke etc.  provide physiotherapy inpatient services working with interdisciplinary healthcare team members to provide patient centered care on medical, surgical, intensive care, paediatric, oncology, palliative, rehabilitation and long term care units. occupational therapy referral: a physician’s referral is required for service. referrals can be faxed to the rehabilitation department at ( ) – . occupational therapy is concerned with promoting health and well-being through everything that people do during the course of everyday life. following an acquired brain injury (i.e. cva, brain tumor, etc.), individuals may have difficulties which interfere with their functional abilities and which impact on their participation in roles and meaningful activities. in the outpatient neuro service, the occupational therapist provides assessment, treatment, education, and consultation to clients requiring additional intervention for specific rehabilitation goals in the areas of self- care (i.e. bathing, dressing), productivity (work, housework) and leisure (sports, hobbies). together with the client, an individualized treatment plan is developed targeting client identified goals towards a desired outcome. the overall goals of this service are to facilitate community reintegration and optimize functional independence in the client’s activities of daily living. services include:  cognitive assessment & treatment  perceptual assessment & treatment  upper extremity assessment & treatment  activities of daily living (adl) assessment & treatment  instrumental activities of daily living (iadl) assessment & treatment  consultation with other services (i.e. social work, physiotherapy) is conducted, when necessary. outpatient services service description cancer care centre referral: most referrals we receive are from your surgeon once he/she has diagnosed your cancer. referrals to the algoma district cancer program occur by telephone, fax or mail. the oncologist then reviews the chart and a first appointment is made for you. our new patient referral clerk registers you and prepares your chart by gathering information such as your diagnostic tests. all new referrals are triaged according to the urgency of your diagnosis. a referral can be held up if all the tests results are not available when a referral is made. renal dialysis contact: - - healthy kidneys clean your blood by removing excess fluid, minerals, and wastes. renal failure (kidney failure) is a situation in which the kidneys fail to function adequately causing fluid retention, a rise in blood pressure, toxin build up, and lack of red blood cells (known as anemia).renal dialysis is the act of removing the wastes, minerals, and excess fluids from a patient's blood using a machine known as a dialysis unit. the specific types of services offered are listed below with specific hours of operation. home hemodialysis: patients who are able to do their own hemodialysis at home with support from family can be trained through a centre in toronto or sudbury. slow nocturnal hemodialysis is performed about five to six nights a week, for eight to nine hours at a time, while the patient sleeps. short daily hemodialysis is done five to seven days per week for four to five hours at a time. you will still need to attend regular appointments every six weeks or so with your dialysis centre.  home hemodialysis hours: weekdays: : am - : pm. during off- hours, contact the hemodialysis unit during their hours of operation.  hemodialysis hours: weekdays: : am - : pm. weekends: : am - : pm continuous ambulatory peritoneal dialysis (capd): this type of dialysis is performed at home every day; waste products are removed from the body by filling and draining the abdomen with clean solution four or five times daily. sault area hospital can train patients to perform their own capd treatments. regular appointments for checkups will be scheduled in the renal clinic. cycler treatment: the is peritoneal dialysis that is performed by a small machine called a cycle which performs the capd exchanges over a - hour period at night. not everyone who can do capd can do cycler treatments due to medical limitations. sault area hospital can train patients to perform their own cycler treatments, and regular follow up appointments will be scheduled. renal health clinic: you also have access to the staff at the renal health clinic, who can assist you will all aspects of renal health, such as diet, renal information, and medications.  renal health clinic hours: weekdays: : am - : pm outpatient physiotherapy contact: - - hours: monday – friday a.m. – p.m. referral: outpatient physiotherapy services are provided to clients with referrals from: orthopaedic surgeons; patients discharged from hospital with neurological problems, cva, tumors, etc.; amputee clinic for pre and post prosthetic training; plastic surgeons for post hand surgery therapy. hand program referral: referrals are required from a plastic surgeon, orthopaedic surgeon or family physician. contact - - . hand therapy is provided by physiotherapists and occupational therapists. a variety of upper extremity conditions are treated including:  acute trauma: crush injuries, fractures, burns, lacerations and tendon, ligament and nerve injuries.  repetitive overuse injuries: carpal tunnel, tendonitis  acquired conditions: arthritis, dupuytren’s hand therapy may provide:  preventative, non-operative or conservative treatment  management of acute or chronic pain and/or edema  desensitization following nerve injury or trauma  scar management techniques  range of motion, active and passive, to gain or maintain movement  sensory re-education after nerve injury  design and implementation of home exercise programs to increase motion, dexterity and strength  custom splint fabrication for preventative or correction of injury  training in performance of daily life skills through adaptive methods and equipment  conditioning prior to returning to work foot clinic referral: physicians with privileges can refer their patients to the foot clinic by faxing a prescription to - - or by forwarding the referral to the outpatient rehabilitation office at - - . the sault area hospital foot clinic is an outpatient service located in the outpatient rehabilitation department (room e ). foot clinic services are available to patients with diagnoses such as:  diabetes  peripheral vascular disease  chronic wounds (ulcers, amputations)  compromised immune systems (lupus, rheumatoid arthritis, psoriatic arthritis, crest syndrome)  chronic renal failure  osteoarthritis (traumatized joints, joint deformities, nerve impingements) the foot clinic is staffed by a registered occupational therapist and services provided include:  advanced foot care  wound care  off-loading devices  custom insoles/orthotics  ambulatory/non-ambulatory afo’s  deflective padding  remedial footwear modifications (sault area hospital website- programs & services, ) sector : long term care map long term care services extendicare van daele manor mauno kaihla koti nursing home f.j davey home extendicare great northern extendicare tendercare sector : long term care inventory long term care organization: extendicare- tendercare address: phone: - - great northern rd fax: - - sault ste marie, on email: cnh_tendercare@extendicare.com p a k website: www.extendicarecanada.com office hours: mon-fri am- pm service hours: mon-sun hours application: must apply through your local community care access centre. eligibility: applicants must meet the ministry of health and long term care eligibility requirements. languages: english health services service description -hour nursing care and supervision residents can be assured that our competent team of registered nurses, registered practical nurses and personal support workers, who are on staff -hours per day, will manage their health-related needs. in keeping with our gentlecare philosophy, individuals with alzheimer’s disease and related dementias have the opportunity to live life to its fullest in a safe and caring environment. our specially trained staff continue to promote resident independence by providing them with the assistance that they require. we value knowledge and skills and promote continuous education for team members, residents and their families. the knowledge and skills acquired by all are used to improve our standards of practice as we continue to help people to live life. - hour on call physician as committed members of our interdisciplinary team, our physicians play an integral role in contributing to our philosophy of care and ensuring that residents' needs are being met. optometry a valuable component of our interdisciplinary approach to resident care is the in-house optometry services. vision testing and repairs to glasses are done on-site, in the comfort of the resident's home. denturist an in-house denturist conducts individual assessments. recommendations from the denturist are discussed with the resident and family, and together they decide the best course of action. dentistry in-house dentistry consultations are available to all residents. specialists in partnership with the sault area hospitals as well as with private practitioners throughout our community, residents of extendicare tendercare have access to specialized services such as cardiologists, urologists, and ophthalmologists. while our in-house physicians and specialists are available to all residents, we recognize the importance of the physician/client relationship, and will respect your decision to have your family physician continue to provide for your health care needs http://www.extendicarecanada.com/ while living at extendicare tendercare. pharmaceutical services our consultant pharmacist is an excellent complement to extendicare tendercare's professional health services. as a member of the interdisciplinary team, our pharmacist works with the nursing staff and the physicians to ensure that each resident's pharmaceutical needs are met. foot care services if desired, a foot care nurse will provide each resident with personal nail and foot care every eight weeks, in the comfort of his or her own room. respiratory care registered respiratory therapists are available in conjunction with our home oxygen suppliers and extendicaretendercare to ensure that residents' needs are being met. support and education is provided to our team members on an ongoing basis. physiotherapy in partnership with a registered physiotherapist, our kinesiologist, residents and their family members are able to develop a therapeutic plan of care that best suits the needs of the resident. continuing therapeutic needs are provided in the comfort of extendicare tendercare via our rehabilitation/restorative care programs. resident programs through the natural aging process, we find some residents may experience such conditions as general weakness, gait problems, de- condition from recent hospitalization, contractures, decreased range of motion, fractures, depression due to decrease in independence, and social isolation. at extendicare tendercare, we believe that physical conditioning increases residents' feelings of independence and self-worth as they work “hand in hand” with our rehabilitation team. working with the rehabilitation team, a staff restorative care worker conducts assessments and together with residents and family members, develops a suitable rehabilitation or restorative care program. in the comfort of extendicare tendercare, residents actively participate in walking programs, strengthening exercises and speech language therapy. social/therapeutic programs extendicare tendercare recognizes the importance of providing our residents with social, as well as therapeutic programs. certified activity aides are busy ensuring that residents' physical, emotional, intellectual, social and spiritual needs are being met. extendicare tendercare values your choice and lifestyle, which play a major role in program planning. activity programs are offered seven days a week and include: dances, social dinners, shopping excursions, movie nights, bingo, discussion groups, cards and games, theme parties, bowling league, art classes and much more. special occasions, holidays and seasonal events also contribute to the diversity of our programs. we also offer programs that include family involvement. we believe that these types of programs help create wonderful memories that will last a lifetime. all in all, our aim is to enhance the quality of life for our residents as we help people to live life. support services service description dietary services at extendicare tendercare, we pride ourselves in providing nutritious home-cooked meals. our resident food committee consists of a dedicated group of residents who meet regularly to discuss and review the current menu. changes to our menu are made as a result of the feedback that we receive from this committee. our in house registered dietician assesses the nutritional requirements of our residents and together with them, their families and registered team members, creates a best-suited nutritional plan of care. environmental services extendicare tendercare’s environmental services department is responsible for ensuring that our residents are safe and secure both within and outside of their home as well as ensuring that extendicare tendercare maintains its welcoming atmosphere. our environment team members are key personnel who focus not only on the housekeeping and laundry needs of our residents, but in fostering a trusting relationship with our residents, families, and team members. social work services extendicare tendercare recognizes the fact that admission into a long- term care centre can be very difficult for you and/or your loved one. our social worker can help you and your family to become acquainted and accustomed to this new living environment. the social worker, a member of our interdisciplinary team, provides supportive counselling, information and education with regard to adjustment, psychosocial issues, financial issues, and referrals to appropriate community resources. social work services strive to enhance the quality of life of all those who live, visit and work at extendicare tendercare. religious and spiritual services extendicare tendercare understands the diversity of spirituality. our chaplain oversees all pastoral services and spiritual care at our home. this is done in part by outreaching to the community on behalf of our residents, i.e., the chaplain liaises with the native friendship centre on behalf of our aboriginal first nations residents, and with clergy for sacraments and prayer. inter-denominational spiritual programs are provided within extendicare tendercare. spiritual programs include bible study, praying the rosary, and multi-faith prayer. weekly church services are held in an inter-denominational setting as well as a denominational setting. our chaplain and volunteers make regular pastoral visits. business office extendicare tendercare believes in the importance of personal contact and recognizes the fact that our residents' and family members' schedules often vary. our courteous receptionists are available to assist you between the hours of : a.m. and : p.m. daily. beautician services our wheelchair accessible salon is located on the main floor and caters to all of our residents hairstyling needs. appointments can be arranged at the business office. (extendicare-extendicare tendercare, ) long term care organization: extendicare- van daele manor address: phone: - - van daele st fax: - - sault ste marie, on email: cnh_vandaele@extendicare.com p b v website: www.extendicarecanada.com office hours: mon-fri am- pm service hours: mon-sun hours application: must apply through your local community care access centre. eligibility: applicants must meet the ministry of health and long term care eligibility requirements. languages: english health care services service description -hour nursing care and supervision increasing care needs of our residents, families and our community. residents can be assured that our competent team of registered nurses, registered practical nurses and personal support workers, who are on staff -hours per day, will manage their health-related needs. our team also includes a nurse practitioner who assists the team in delivery of care to our residents. in keeping with our gentlecare philosophy, individuals with alzheimer’s disease and related dementias can live life to its fullest in a safe and caring environment. our specially trained staff promote resident independence by providing them with the help they require. we value knowledge and skills and promote continuous education for team members, residents and their families. the knowledge and skills acquired by all are used to improve our standards of practice. resident programs at extendicare van daele we believe it is important for each resident to be physically and socially active. the resident program department provides a variety of programs that recognize our residents' physical, intellectual, emotional, social and spiritual well-being. some of our regularly scheduled activities include group exercises, discussion groups, baking and cooking programs, pet therapy and intergenerational programs. the resident programs department also provides goal- oriented therapeutic services geared towards the restoration of physical function and/or psychosocial ability. restorative care programs include grooming/dressing training, eating training, ambulation training, weight bearing exercises, strengthening and range of motion exercises and a mobility/comfort aids program. support services service description dietary services at extendicare van daele, we pride ourselves in providing nutritious home-cooked meals. our resident food committee consists of a dedicated group of residents who meet regularly to discuss and review the current menu. changes to our menu are made as a result of the http://www.extendicarecanada.com/ feedback that we receive from this committee. our in house registered dietitian assesses the nutritional requirements of our residents and together with them, their families and registered team members, creates a best-suited nutritional plan of care. environmental services extendicare van daele's environmental services department works diligently to ensure that our home maintains its welcoming atmosphere. our team members are key personnel who focus not only on the daily housekeeping or laundry needs but also provide a listening ear when someone is lonely or a hug when someone is down. our environmental services department is also responsible for ensuring that our residents are safe and secure both within and outside of their home. religious and spiritual services extendicare van daele understands the diversity of spirituality. our chaplain oversees all pastoral services and spiritual care at our facility. this is done in part by outreach to the community on behalf of our residents and with clergy for sacraments and prayer. inter- denominational spiritual programs are provided within extendicare van daele. spiritual programs include bible study, praying the rosary, and multi-faith prayer. our chaplain and volunteers make regular pastoral visits. business office extendicare van daele believes in the importance of personal contact and recognizes the fact that our residents' and family members' schedules often vary. our courteous receptionists are available to assist you between the hours of : a.m. and : p.m. daily. beautician services our wheelchair accessible salon is located on the main floor and caters to all of our residents hairstyling needs. appointments can be arranged at the salon. (extendicare-van daele manor, ) long term care organization: f.j davey home address: phone: - - third line east fax: - - sault ste marie, on email: p a c website: www.fjdaveyhome.org office hours: mon-fri am- pm service hours: mon-sun hours application: must apply through your local community care access centre. eligibility: applicants must meet the ministry of health and long term care eligibility requirements. languages: english. health services service description nursing & medical care the davey home recognizes that residents will have a wide range of health related needs. these are responded to on an individual basis, through the provision of the following services:  medical director  associate medical directors for specific levels of care if former family doctor does not have home medical privileges  registered nurses (rn’s) as our charge nurses  registered practical nurses (rpn’s) as our team leaders  health care aides (hca’s) as our direct care providers  all levels of nursing staff are available and on duty twenty-four hours daily  infirmaries and palliative care suites are available where required  dietitian services with nutritional counseling provided and therapeutic diets planned as required  restorative care services providing individual exercise according to the doctor’s request as well as group activities resident care planning upon admission, a resident care plan is developed in consultation with the resident and their representative (if appropriate), the interdisciplinary team and the attending physician. an interdisciplinary care conference is held within six weeks of admission and then annually thereafter. if there is a change in the resident’s medical status or a change in their functional or cognitive capacities, the resident representative (if appropriate) is called and a care conference is held to respond to the changes. our physicians notify the home of their absences and their medical delegate. medications on admission, any medications brought into the home are reviewed by the team leader and after the details have been recorded, the representative will be asked to take them away. all of your medications will be ordered by your physician, provided by medisystem pharmacy and administered to you by the team leader for your home area. a one week supply of any one drug is kept on hand. prescriptions not covered by the ontario drug benefit program will be billed to residents or their alternate by the pharmacy. a payment drop box is available to residents and families at the reception desk. palliative care palliative care, also called comfort care, is primarily directed at providing relief to a terminally ill person through symptom management and pain management. the goal is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. at the davey home palliative care is provided by caring staff who have received specialized palliative care training. on each level, a palliative care/infirmary room has been decorated and furnished through the generous efforts of the home’s auxiliary. these rooms provide a private, comfortable atmosphere for residents and their families during this difficult time. restorative care/ therapy restorative care services are organized to ensure the therapy needs of residents are met and to assist them in achieving their optimum mobility. the restorative care staff have the assistance of one full-time and one part-time physiotherapist to complement the program, along with a full- time kinesiologist. residents have the opportunity for individualized therapy as well as group exercise programs, based on the assessed needs of the participating residents. occupational therapy and speech therapy can be accessed through the local community care access centre as required and, in addition, the local hearing society and cnib contribute their services. provided, as well, are equipment assessments for residents requiring adaptive devices. the ultimate goal of the restorative care program is to encourage wellness, activation and create a sense of well- being amongst our residents. dental care residents or their representative must make arrangements and assume the cost of visits to a dentist and for the purchase of dentures if required. advanced foot care advanced foot care is not a basic nursing service and may be required for some residents. when this type of care is required, the resident or their representative must make arrangements with an external provider and assume the cost. advanced nursing skills in foot care include services provided by specially trained rn’s and rpn’s and include non-invasive measures beyond basic skills. information on a variety of local agencies with which service contracts have been developed is available upon request. recreation & leisure the recreation and activities department is organized to provide age appropriate recreational, creative and educational opportunities based on and responsive to the abilities, strengths, needs, interests and former life style of the resident. residents are also encouraged to remain active in any clubs or activities with which they were previously associated. within the home there is a daily program of activities such as fun & fitness, card parties, bingo, music, sing-a-longs and parties for special events. a handicap accessible bus is available for staff to take residents on outings away from the home. these outings include scheduled regular shopping trips and luncheons. craft/activity rooms are available in each resident home area for resident use and are geared to individual abilities of the residents. the programs operate every day and offer a variety of crafts and activities. a monthly newsletter, "home happenings", is prepared to provide residents and families with schedules of events and interesting news items and information. support services service description dietary menus are planned to meet nutritional needs while taking into consideration personal preferences and seasonal specialties. resident food preferences are considered and a checklist is provided upon admission. nutritional assessments are completed by the onsite dietitian. therapeutic diets are provided when ordered by the resident’s physician or the dietitian. meal service includes three meals daily with snacks between meals and at bedtime. meals are prepared onsite in a full service kitchen and served in the dining room located on each of the twelve resident home areas. residents are able to celebrate special events, such as birthdays, anniversaries, christmas and mother’s/father’s day with their family in the home. a room may be reserved by contacting the director of resident & volunteer activities at extension . advance notice should be provided to ensure availability, as rooms are offered on a first come, first serve basis. although the rha dining room does not accommodate guests, families may join a resident for a meal in the rha activity room or lounge, as available, or in pine court or maple court, as reserved. the home is unable to provide meals for guests and family, but they are more than welcome to bring in their own meal. spiritual & religious the home has a beautiful, dedicated multi-faith worship center which is accessible to residents, families and staff for private worship and other individual or group religious activities. the home employs a chaplain who co-ordinates regular denominational and inter-denominational services which are held in the worship centre. the schedule is available outside the worship centre door and in the home newsletter. the residents also have access to spiritual companion volunteers who visit for prayer, study, companionship and friendship. in addition, the chaplain offers pastoral counseling, grief and bereavement support, palliative care support, arranges memorial services and individualized contact when needed. environmental services cleaning, laundry and maintenance services are provided to residents. all personal items are marked with the resident’s name upon admission. machine washing and drying of personal clothing is provided at no charge. items requiring dry cleaning are not recommended, however dry cleaning services are supplied by a local service. these services are paid for by the resident. in accordance with home policy, placement of furniture, mounting of pictures, replacement of light bulbs and connection of electrical appliances are performed by our maintenance department. beautician onsite hairdressing services are offered by qualified hairdressers. hairdressing shops are located on each level and are open weekdays as required. a complete range of services are provided and prices vary according to the service. (f.j. davey home-our services, ) long term organization: mauno kaihla koti nursing home address: phone: - - north st fax: - - sault ste marie, on email: info@ontariofinnishresthome.ca p b z website: www.ontariofinnishresthome.ca office hours: mon-fri am- pm service hours: mon-sun hours application: must apply through your local community care access centre. eligibility: applicants must meet the ministry of health and long term care eligibility requirements. languages: english. french, finnish - staff person, no services provided. health services service description -hour nursing and personal care nursing and personal care on a -hour basis, including care given by or under the supervision of a registered nurse or a registered practical nurse, the administration of medication and assistance with activities of daily living. physician services -hour on call physician. residents may continue to have their personal physician provide care to them in the facility. these physicians will be expected to meet the standards and criteria for attending physicians other foot care, hairdressing/barber services, laundry services, meals, medication administration, palliative care , social work services/family services coordinator, spiritual programs and pastoral care, various recreational programs and social events. (ontario finnish rest home association- mauno kaihla koti, ; north east community care access centre- mauno kaihla koti nursing home , ) long term care organization: extendicare great northern address: phone: - - great northern rd fax: - - sault ste marie, on email: p a k website: www.extendicarecanada.com office hours: mon-fri am- pm service hours: mon-sun hours application: must apply through your local community care access centre. eligibility: applicants must meet the ministry of health and long term care eligibility requirements. languages: english. health services service description all services  -hour nursing care and supervision  -hour on call physician  care conferences  foot care  hairdressing/barber services  laundry services  meals  medication administration  palliative care  physician visits  social work services/family services coordinator  spiritual programs and pastoral care  various recreational programs and social events (north east community care access centre-extendicare great northern, ) sector : retirement residences map retirement residences great northern retirement residence pathways retirement residence collegiate heights sector : retirement residences inventory retirement residences organization: collegiate heights address: phone: - - fauquier ave fax: - - sault ste marie, on email: collegiateheights@chartwellreit.ca p b p website: www.chartwellreit.ca service hours: mon-sun hours application: contact facility via phone or email for more information. eligibility: year(s) and up. independent well retired seniors. languages: english. general services service description support & wellness  health care monitoring  professional on-site management  hour security monitoring service  concierge services  unlimited access to scheduled life enrichment programs in recreation, leisure, social arts, entertainment and fitness  scheduled transportation for local shopping  weekly housekeeping including: vacuuming, light dusting, cleaning of bathrooms, kitchenette surfaces, floors and change and laundry of bed linens customized support & wellness advantage plus services  medication assistance – for persons who self-medicate & use assistance for ordering, monitoring, delivery to suite & consultation with registered staff  medication administration/treatments to resident suite  laundry service: washed, folded and delivered to suite  weekly assistance with one bath/shower per week in resident suite  incontinence management  daily housekeeping, garbage pick-up, washroom service or bed making  assistance with activities of daily living (dressing, hygiene, dental care, etc)  prescribed treatments, injections and blood work as per physician order  seasonal or additional deep cleaning of suite including carpet cleaning  customized specialized care may include; illiostomy, urostomy, colostomy, oxygen care  escort to activities, meals or ambulation, mobilization or transfer assistance  pet care  other customized services may be available on discussion with manager dining  access to self-serve hospitality & refreshment areas hours daily  some therapeutic diets may be available on consultation with food services manager  two meals; lunch and supper either served or buffet style as designated short stay beds  collegiate heights retirement residence offers a variety of short-term stays based on your needs. we welcome short stays for a variety of reasons whether you need care after being in hospital, a break from daily chores or to see what retirement living is all about. we invite you to come and enjoy delicious meals, great company and daily activities with people just like you. with hr professionally trained staff on site, you can rest assured knowing help is close by. (chartwell, ) retirement residences organization: great northern retirement residence address: phone: - - great northern rd fax: - - sault ste marie, on email: greatnorthernn.longo@shaw.ca p a k website: www.greatnorthernretirement.com office hours: mon-fri am- pm service hours: mon-sun hours application: contact facility via phone, email, or website for more information. eligibility: ages: year(s) and up. independent, well seniors. further details listed below under accommodation type. languages: english. accommodations service description independent living  relatively independent and self sufficient  emergency nursing assistance provided  complete meals and snacks daily. beverages available at all times.  housekeeping services once per week.  laundry service once per week.  must be able to ambulate to and from dining area with or without use of assistive device.  must be able to feed self. third floor dining must be able to serve buffet style.  must be able to bathe, dress self, maintain oral care and be independent with toileting.  must be oriented to person, place and time.  must be able to safely administer own medication. basic living  relatively independent and self-sufficient.  emergency nursing assistance provided.  complete meals and snacks daily. beverages available at all times.  housekeeping services once per week.  laundry service once per week.  must be able to ambulate to and from dining area with or without use of assistive device.  must be able to feed self. third floor dining must be able to serve buffet style.  must be able to bathe, dress self, maintain oral care and be independent with toileting.  assistance with one bath per week.  must be oriented to person, place and time.  must be able to safely administer own medication or manage with meds set up in dosette (pill organizer). director of care will order medication and refill dosette weekly.  provisions for insulin administration, prescribed treatments.  physician contact on behalf of resident provided with permission assisted living  emergency nursing assistance provided.  complete meals and snacks daily. beverages available at all times.  must be able to feed self. meal service to table. speciality diet provisions. assistance with presentation of food given (i.e. cutting of food for individual with physical limitations).  daily housekeeping to assist the resident who experience difficult in maintaining a tidy/safe living environment.  laundry service once per week.  must be able to safely transfer from bed to chair, vice versa- assistance to and from dining area available from staff. assistive devices allowed on all levels.  provisions for assistance with dressing, undressing, hs care.  assistance with one bath per week.  assistance with incontinence (controlled) to include daily prei care, assistance with depends.  must be largely cognitive (slightly confused residents who are not prone to wandering to follow in house policy and procedure).  provision for total medication administration regime including physician contract, pharmacy reordering and documenting of same on mars for doctor’s appointments on behalf of resident.  night check of requested by resident/responsible party.  on call emergency nursing and physician contact on behalf of resident regarding health concerns as indicated health and support services service description general  offers rooms/suites with ensuite  provides meals per day and snacks  hr nursing monitoring  housekeeping services  provides activities including games, musical entertainment, and outings  medication administration  laundry services  assistance with weekly bathing/shower  assistance with activities of daily living (dressing, hygiene)  parking for residents and visitors  pet care (great northern retirement home, ). retirement residences organization: pathways retirement residence address: phone: - - trunk rd fax: - - sault ste marie, on email: pathways@bellnet.ca p a t website: www.pathwaysretirement.com office hours: mon-fri am- pm service hours: mon-sun hours application: contact facility via phone, email, or website for more information. eligibility: ages: year(s) and up. independent, well seniors. languages: english. health and support services service description health care & support services  provides meals per day and snacks  hr staffing  housekeeping services  assists with medication administration  provides assistance with personal care  assistance with bathing/shower activities service description regular activities  exercise programs  bingo  crafts  movies and videos  evening entertainment intergenerational activities during the school year children come on the first monday of each month to read their books aloud to a reading buddy. each child is assigned to an adult who will listen to oral reading and assist with vocabulary when necessary. on the second monday of each month students come to play board games in various locations throughout the building. at christmas and again in june the students belonging to the junior choir present their repertoire. on tuesday afternoons a group meets in the library to engage in word puzzle solving working co-operatively to get the answers, while other residents play crokinole, cards, cribbage or dominoes in the activities room. bible studies- church services bible study discussion group meets in the chapel area once a week. each participant should bring a bible. st. jerome’s catholic church conducts monthly mass on the first friday of every month. each sunday there is a service for roman catholic residents at : am provided by lay persons from st. jerome’s parish while an interdonominational service takes place at : am in the chapel. communion services are conducted periodically throughout the year. in addition to the services already mentioned hymn sings are held at regular intervals by various groups during the summer months. special annual events pathways retirement residence offers server special annual events that include: mother’s day tea; fall colours bus trip; halloween costume party; christmas lights tour; christmas tea and bazaar; new year’s eve party. evening events and some afternoon special events are made possible with the assistance of volunteers, often family members of residents and during the school year high school students who have chosen pathways to perform volunteer hours here. volunteer assistance is gratefully appreciated. building services service description beauty salon licensed hairdresser available on tuesdays and thursdays. appointments are booked through reception and you pay charges directly to the hairdresser. office the office is open from : am to : pm monday through friday and office staff will assist you and answer any questions you may have regarding monthly statements, dining guests, cash transactions, etc. mail incoming mail is placed in your private mail box by canada post, monday through friday. there is a canada post outgoing mail box located at the front entrance for your convenience. parking your own individual parking spot awaits you with winter block heater receptacle at no extra cost to you. (pathways retirement residence, ) sector : independent living affordable seniors apartments map independent living affordable seniors apartments italian housing corporation of sault ste. marie- villa santa maria lions club of sault ste. marie housing corporation sault ste. marie housing corporation- st. villa vista sault ste. marie housing corporation- chapple heights sault ste. marie housing corporation- bay street suomi eesti maja (ontario finnish rest home association) sault ste. marie housing corporation- st. georges ave. east st. gregory’s seniors citizens non-profit homes of sault ste. marie sault ste. marie housing corporation- chapple street sector : independent living affordable seniors apartments inventory independent living affordable seniors apartments organization: italian housing corporation of sault ste. marie- villa santa maria address: phone: ( ) - east street fax: sault ste marie, on email: peetster@shaw.ca p a w website: http://www.ssm-dssab.ca/housingproviders/index.cfm office hours: mon-fri : pm - : pm contact: peter giustini, general manager application: application forms can be found online through the following link: http://ssm- dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf application forms can also be obtained from the application centre location listed below.  application centre: sault ste. marie social housing application centre brock street sault ste. marie, on p a b phone: ( ) - eligibility: you may be eligible for rent-geared-to-income (rgi) housing if: . you are: a canadian citizen; a landed immigrant; or a refugee claimant . no member of the household: owes arrears of rent to any social housing provider; owes money to previous social housing providers; has been convicted of an offence regarding the receipt of rgi assistance; has misrepresented their income for the purpose of rgi . all rgi tenants / members are required to pursue all possible sources of income such as: ontario works; child support employment insurance; immigration sponsorship support . meet the rgi financial needs criteria . a senior is a person years of age or older or will be years of age within months of date of application. languages: english. service description tenant type senior location downtown one bedroom units two bedroom units special needs units assisted living services not located on-site, however tenant may obtain assisted living services at their own discretion. (district of sault ste. marie social services administration board- social housing, ) http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf independent living affordable seniors apartments organization: lions club of sault ste. marie housing corporation address: phone: ( ) - bay st. suite fax: sault ste marie, on email: lionsplace@on.aibn.com p a r website: http://www.ssm-dssab.ca/housingproviders/index.cfm office hours: mon-thurs : am - : pm contact: melissa lennox, property manager application: application forms can be found online through the following link: http://ssm- dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf application forms can also be obtained from the application centre location listed below. application centre: sault ste. marie social housing application centre brock street sault ste. marie, on p a b phone: ( ) - eligibility: you may be eligible for rent-geared-to-income (rgi) housing if: . you are: a canadian citizen; a landed immigrant; or a refugee claimant . no member of the household: owes arrears of rent to any social housing provider; owes money to previous social housing providers; has been convicted of an offence regarding the receipt of rgi assistance; has misrepresented their income for the purpose of rgi . all rgi tenants / members are required to pursue all possible sources of income such as: ontario works; child support employment insurance; immigration sponsorship support . meet the rgi financial needs criteria . a senior is a person years of age or older or will be years of age within months of date of application. languages: english. service description tenant type senior location downtown one bedroom units two bedroom units special needs units assisted living services not located on-site, however tenant may obtain assisted living/ in-home care services at their own discretion. (district of sault ste. marie social services administration board- social housing, ) http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf independent living affordable seniors apartments organization: suomi eesti maja (ontario finnish rest home association) address: phone: ( ) - north street fax: sault ste marie, on email: lmassad@theofra.org p b t website: http://www.ssm-dssab.ca/housingproviders/index.cfm office hours: mon-fri : am - : pm contact: lewis massad or andy koskinen application: application forms can be found online through the following link: http://ssm- dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf application forms can also be obtained from the application centre location listed below. application centre: sault ste. marie social housing application centre brock street sault ste. marie, on p a b phone: ( ) - eligibility: you may be eligible for rent-geared-to-income (rgi) housing if: . you are: a canadian citizen; a landed immigrant; or a refugee claimant . no member of the household: owes arrears of rent to any social housing provider; owes money to previous social housing providers; has been convicted of an offence regarding the receipt of rgi assistance; has misrepresented their income for the purpose of rgi . all rgi tenants / members are required to pursue all possible sources of income such as: ontario works; child support employment insurance; immigration sponsorship support . meet the rgi financial needs criteria . a senior is a person years of age or older or will be years of age within months of date of application. languages: english. service description tenant type senior location central one bedroom units two bedroom units special needs units assisted living services not located on-site, however tenant may obtain assisted living/ in-home care services at their own discretion. (district of sault ste. marie social services administration board- social housing, ) http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf independent living affordable seniors apartments organization: st. gregory’s seniors citizens non-profit homes of sault ste. marie address: phone: ( ) - dovercourt road fax: sault ste. marie, on email: stgreg@sympatico.ca p c a website: http://www.ssm-dssab.ca/housingproviders/index.cfm contact: john cavaliere, property manager application: application forms can be found online through the following link: http://ssm- dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf application forms can also be obtained from the application centre location listed below. application centre: sault ste. marie social housing application centre brock street sault ste. marie, on p a b phone: ( ) - eligibility: you may be eligible for rent-geared-to-income (rgi) housing if: . you are: a canadian citizen; a landed immigrant; or a refugee claimant . no member of the household: owes arrears of rent to any social housing provider; owes money to previous social housing providers; has been convicted of an offence regarding the receipt of rgi assistance; has misrepresented their income for the purpose of rgi . all rgi tenants / members are required to pursue all possible sources of income such as: ontario works; child support employment insurance; immigration sponsorship support . meet the rgi financial needs criteria . a senior is a person years of age or older or will be years of age within months of date of application. languages: english. service description tenant type senior location west end one bedroom units two bedroom units special needs units assisted living services not located on-site, however tenant may obtain assisted living/ in-home care services at their own discretion. (district of sault ste. marie social services administration board- social housing, ) http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf independent living affordable seniors apartments organization: sault ste. marie housing corporation- bay street address: phone: ( ) - bay street fax: sault ste. marie, on email: j.barban@cityssm.on.ca website: http://www.ssm-dssab.ca/housingproviders/index.cfm contact: jeff barban, operations manager application: application forms can be found online through the following link: http://ssm- dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf application forms can also be obtained from the application centre location listed below. application centre: sault ste. marie social housing application centre brock street sault ste. marie, on p a b phone: ( ) - eligibility: you may be eligible for rent-geared-to-income (rgi) housing if: . you are: a canadian citizen; a landed immigrant; or a refugee claimant . no member of the household: owes arrears of rent to any social housing provider; owes money to previous social housing providers; has been convicted of an offence regarding the receipt of rgi assistance; has misrepresented their income for the purpose of rgi . all rgi tenants / members are required to pursue all possible sources of income such as: ontario works; child support employment insurance; immigration sponsorship support . meet the rgi financial needs criteria . a senior is a person years of age or older or will be years of age within months of date of application. languages: english. service description tenant type senior location downtown one bedroom units two bedroom units special needs units assisted living services located on-site and available to residents who meet service eligibility criteria. (district of sault ste. marie social services administration board- social housing, ) http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf independent living affordable seniors apartments organization: sault ste. marie housing corporation- chapple heights address: phone: ( ) - chapple street fax: sault ste. marie, on email: j.barban@cityssm.on.ca website: http://www.ssm-dssab.ca/housingproviders/index.cfm contact: jeff barban, operations manager application: application forms can be found online through the following link: http://ssm- dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf application forms can also be obtained from the application centre location listed below. application centre: sault ste. marie social housing application centre brock street sault ste. marie, on p a b phone: ( ) - eligibility: you may be eligible for rent-geared-to-income (rgi) housing if: . you are: a canadian citizen; a landed immigrant; or a refugee claimant . no member of the household: owes arrears of rent to any social housing provider; owes money to previous social housing providers; has been convicted of an offence regarding the receipt of rgi assistance; has misrepresented their income for the purpose of rgi . all rgi tenants / members are required to pursue all possible sources of income such as: ontario works; child support employment insurance; immigration sponsorship support . meet the rgi financial needs criteria . a senior is a person years of age or older or will be years of age within months of date of application. languages: english. service description tenant type senior location central one bedroom units two bedroom units special needs units assisted living services located on-site and available to residents who meet service eligibility criteria. (district of sault ste. marie social services administration board- social housing, ) http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf independent living affordable seniors apartments organization: sault ste. marie housing corporation- chapple street address: phone: ( ) - chapple street fax: sault ste. marie, on email: j.barban@cityssm.on.ca website: http://www.ssm-dssab.ca/housingproviders/index.cfm contact: jeff barban, operations manager application: application forms can be found online through the following link: http://ssm- dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf application forms can also be obtained from the application centre location listed below. application centre: sault ste. marie social housing application centre brock street sault ste. marie, on p a b phone: ( ) - eligibility: you may be eligible for rent-geared-to-income (rgi) housing if: . you are: a canadian citizen; a landed immigrant; or a refugee claimant . no member of the household: owes arrears of rent to any social housing provider; owes money to previous social housing providers; has been convicted of an offence regarding the receipt of rgi assistance; has misrepresented their income for the purpose of rgi . all rgi tenants / members are required to pursue all possible sources of income such as: ontario works; child support employment insurance; immigration sponsorship support . meet the rgi financial needs criteria . a senior is a person years of age or older or will be years of age within months of date of application. languages: english. service description tenant type senior location central one bedroom units two bedroom units special needs units assisted living services not located on-site, however tenant may obtain assisted living/ in-home care services at their own discretion. (district of sault ste. marie social services administration board- social housing, ) http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf independent living affordable seniors apartments organization: sault ste. marie housing corporation- st. georges ave. east address: phone: ( ) - st. georges avenue east fax: sault ste. marie, on email: j.barban@cityssm.on.ca website: http://www.ssm-dssab.ca/housingproviders/index.cfm contact: jeff barban, operations manager application: application forms can be found online through the following link: http://ssm- dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf application forms can also be obtained from the application centre location listed below. application centre: sault ste. marie social housing application centre brock street sault ste. marie, on p a b phone: ( ) - eligibility: you may be eligible for rent-geared-to-income (rgi) housing if: . you are: a canadian citizen; a landed immigrant; or a refugee claimant . no member of the household: owes arrears of rent to any social housing provider; owes money to previous social housing providers; has been convicted of an offence regarding the receipt of rgi assistance; has misrepresented their income for the purpose of rgi . all rgi tenants / members are required to pursue all possible sources of income such as: ontario works; child support employment insurance; immigration sponsorship support . meet the rgi financial needs criteria . a senior is a person years of age or older or will be years of age within months of date of application. languages: english. service description tenant type senior location central one bedroom units two bedroom units special needs units assisted living services not located on-site, however tenant may obtain assisted living/ in-home care services at their own discretion. (district of sault ste. marie social services administration board- social housing, ) http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf independent living affordable seniors apartments organization: sault ste. marie housing corporation- st. villa vista address: phone: ( ) - chapple street fax: sault ste. marie, on email: j.barban@cityssm.on.ca website: http://www.ssm-dssab.ca/housingproviders/index.cfm contact: jeff barban, operations manager application: application forms can be found online through the following link: http://ssm- dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf application forms can also be obtained from the application centre location listed below. application centre: sault ste. marie social housing application centre brock street sault ste. marie, on p a b phone: ( ) - eligibility: you may be eligible for rent-geared-to-income (rgi) housing if: . you are: a canadian citizen; a landed immigrant; or a refugee claimant . no member of the household: owes arrears of rent to any social housing provider; owes money to previous social housing providers; has been convicted of an offence regarding the receipt of rgi assistance; has misrepresented their income for the purpose of rgi . all rgi tenants / members are required to pursue all possible sources of income such as: ontario works; child support employment insurance; immigration sponsorship support . meet the rgi financial needs criteria . a senior is a person years of age or older or will be years of age within months of date of application. languages: english. service description tenant type senior location central one bedroom units two bedroom units special needs units assisted living services not located on-site, however tenant may obtain assisted living/ in-home care services at their own discretion. (district of sault ste. marie social services administration board- social housing, ) http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf http://ssm-dssab.ca/documents/assets/uploads/files/en/rgi_application_december_ .pdf sector : assisted living services map assisted living services red cross sault ste. marie and district branch- community health services kotitalo (ontario finnish resthome association) ontario march of dimes- sault ste. marie sector : assisted living services inventory assisted living services organization: red cross sault ste. marie and district branch- community health services office address: phone: - - allard st toll free: - - - sault ste. marie, on email: sharon.swain@redcross.ca p b g website: www.redcross.ca office hours: mon-fri : am- : pm service hours: mon-sun hours a day application: contact office via phone or email. eligibility: demonstrates a need for daily access to personal support and/or attendant services throughout a hour period every day. languages: english. service description assisted living assisted living services for high risk seniors’ services aim to focus on activities of daily living that you can no longer do or find challenging to do on your own such as:  toileting  washing/bathing  preventative skin care  transferring/positioning/turning  dressing/undressing  assistance with eating  reminders re: pre-measured medications  exercising  meal preparation  bed making and laundry  light housekeeping (north east community care access centre- canadian red cross - sault ste marie and district branch, ) assisted living services organization: kotitalo (ontario finnish resthome association) office address: phone: - - north st fax: - - sault ste. marie, on email: info@ontariofinnishresthome.ca p b z website: www.ontariofinnishresthome.ca office hours: mon-fri : am- : pm service hours: mon-sun hours a day application: may require an assessment prior to admission. eligibility:  assisted living accommodation: a new applicant must meet all of the following criteria in order to be approved for admission: o disabled adult ( years of age or older) or adult aged year of age or older. o have a medical assessment (functional and social assessment) on file that has been completed within the last year and indicates that the applicant is suitable for admission to a supportive housing facility. o care requirements can be met by the supportive housing program. o must be able to ambulate independently or by using an assistive device (e.g., wheelchair). note that if using an assistive device, must be able to transfer self from wheelchair to chair or to bed independently. motorized wheelchairs/scooters are not permitted. o must be able to complete his/her daily personal care, such as dressing and daily washing (unless partner able to provide this care). o must be mentally alert and not at risk of wandering outside or at risk of safety to self or others. o must not be incontinent of bowel or bladder functioning unless able to change self. o must be able to prepare own breakfast o must be able to control and take his/her own medications.  assisted living services: o rn supervisor at kotitalo will do admission assessment to determine eligibility to supportive housing (i.e assisted living) o demonstrates a need for daily access to personal support and/or attendant services throughout a hour period every day. languages: english. finnish - staff member, no services. service description general services with accommodation  hour lifeline emergency call response  housekeeping services  provides activities including games, musical entertainment, and outings  laundry services  parking for residents and visitors  hair salon  blood pressure clinics  foot care (twice per month, extra service fee)  dental care (extra service fee)  lounge  tuck shop  library  eye clinics  physiotherapy  bakery assisted living services assisted living services for high risk seniors’ services aim to focus on activities of daily living that you can no longer do or find challenging to do on your own such as:  toileting  washing/bathing  preventative skin care  transferring/positioning/turning  dressing/undressing  assistance with eating  reminders re: pre-measured medications  exercising  meal preparation  bed making and laundry  light housekeeping (north east community care access centre- ontario finnish resthome association - kotitalo sault ste marie, ). assisted living services organization: ontario march of dimes- sault ste. marie office address: phone: - - ext bay st fax: - - sault ste. marie, on email: dchisholmtullio@marchofdimes.ca p a l website: office hours: mon-fri : am- : pm service hours: mon-sun hours a day application: may require an assessment prior to admission. eligibility: demonstrates a need for daily access to personal support and/or attendant services throughout a hour period every day. languages: english. service description assisted living services assisted living services for high risk seniors’ services aim to focus on activities of daily living that you can no longer do or find challenging to do on your own such as:  toileting  washing/bathing  preventative skin care  transferring/positioning/turning  dressing/undressing  assistance with eating  reminders re: pre-measured medications  exercising  meal preparation  bed making and laundry  light housekeeping (north east community care access centre- ontario march of dimes-sault ste. marie, ). sector : in-home care services map in-home care services north east community care access centre revera home health sault ste. marie f.j. davey home bayshore home health care- sault ste. marie victoria order of nurses- algoma branch we care home health services canadian red cross- sault ste. marie and district branch shoppers home health care- sault ste. marie alzheimer society - sault ste. marie and algoma district sector : in-home care services inventory in-home care services organization: north east community care access centre office address: phone: - - bay st fax: - - sault ste. marie, on email: janet.skuce@ne.ccac-ont.ca p a x website: www.ne.ccac-ont.ca toll free: - - - teletype: - - - office hours: mon-fri : am- : pm telephone line: mon-sun am- pm application: self-referrals, friends and family, health care professionals; waiting periods for services may vary depending on the type of service required and priority need; must meet eligibility criteria. eligibility: must be years of age to access any long term care facilities; children and youth with health needs that impact their ability to learn at school; community clients requiring short or long term care to meet their needs. languages: english; french. service description case management with your participation or the participation of your family or caregivers, the north east ccac case manager plans and coordinates the services that you may need at home or at school. the case manager will work with your physician and other members of your healthcare team to help plan your care and maximize your independence. the case manager monitors your services and adapts them to your needs as your condition changes. nursing based on your needs, a registered nurse or registered practical nurse may:  provide nursing services in home, school or clinic settings;  provide/teach wound and ostomy care, intravenous therapy, catheterization, pain and symptom management;  educate you or caregivers on your disease/health condition to manager your health and care needs;  support you and your family in providing palliative/end of life care at home. personal support/ homemaking based on your needs, a personal support worker may:  help you with personal care including bathing, dressing and toileting needs;  teach and assist with daily activities in order to enable you to stay in your home;  may provide time for your caregivers to leave the home for short periods, if you live pith someone who helps with most or all of your personal care and daily activities;  may provide limited homemaking tasks (laundry and light housekeeping) if no other supports are available. social work based on your needs, a social worker may:  provide services to you and caregivers if experiencing stress, loss or difficulties resulting from illness or disability;  provide short term confidential counselling to assist with maximizing your social and emotional functioning, and enhancing your problem-solving and coping capacities;  recommend strategies to help you adapt to change and address barriers to assist in recovery or rehab. occupational therapy based on your needs, an occupational therapist may:  provide services if you are having problems with daily activities because of physical or cognitive challenges to promote your independence and safety;  assess your function (moving from bed to chair, getting on/off of your chair, etc.) and your home set up and to make your daily routine easier;  recommend modifications to the home or school environment/assistive equipment for safety and accessibility. nutritional counselling based on your needs, a dietitian may:  assess if you are experiencing nutritional difficulties;  recommend a personalized therapeutic diet or;  recommend the appropriate use of special nutrition preparations taken by mouth or by tube feedings; and  teach and support you and your caregivers about nutritional needs, methods to monitor intake of food and fluids, and recommend food supplements. speech-language pathology based on your needs, a speech-language pathologist may:  assess if you are experiencing speech and language disorders, voice or swallowing difficulties;  recommend and teach you in the use of communication and technology aids such as symbol boards and computer programs;  provide techniques for safe swallowing of liquids and foods;  provide services to your child and school staff in areas of articulation/phonology, voice and fluency. medical equipment & supplies this service may be provided if you are receiving nursing, physiotherapy, occupational therapy, speech-language pathology and dietetic services from the north east ccac: medical supplies and dressings:  some limited medical supplies for specific needs for a short period of time such as wound dressings or intravenous supplies;  information about other resources when items need to be purchased.  client pick up is needed. medical equipment rental:  short-term rental of some medical equipment such as wheelchairs, walkers, or bath chairs; (if the equipment is needed for a longer period of time, you will need to rent or purchase). drug benefits:  prescription medications approved by the ontario drug benefit plan (paid for by the ontario ministry of health and long term care); and  ontario drug benefit eligibility card for short time if you are receiving, or are on a wait list for, professional services and your medication needs are related to your reason for admission;  information about other sources, e.g. trillium when medications are needed for longer periods. (north east community care access centre-client care information booklet, n.d.) in-home care services organization: revera home health sault ste. marie office address: phone: - - drive-in rd, # fax: - - sault ste. marie, on email: p b a website: www.reveraliving.com/home-health.aspx toll free: - - - office hours: mon-fri : am- : pm service hours: mon-sun hrs application: contact office via phone or fax. eligibility: contact office via phone or fax. languages: english; french speaking staff. nursing service description elder care revera’s nurses have specialized training and expertise in providing home care for elderly, disabled and convalescing seniors. we will work with you and your family to develop a customized plan of care that ensures your physical and emotional needs are met. whether it’s a short visit, scheduled wellness checks or around-the-clock care, we will ensure that procedures such as iv therapy, foot care, medication administration, and ostomy care are performed in a compassionate manner that respects your dignity. post-hospital care have you recently had surgery and are now recovering at home? we can help you achieve a smooth and speedy recovery. our nurses will work with you to develop a customized plan for your home care, assess the impact of your surgery on your living environment and daily activities, and deliver any support or treatments you require such as intravenous (iv) therapy. wound and ostomy management with any wound, the goal is to prevent infection and promote healing so that you can safely return to your daily activities. our nurses have the expertise to deal with a variety of wounds including ulcers, incisions, burns and skin grafts. we carry out treatments and monitor the condition of wounds based on best practice. we can also provide advice about which supplies and products are best suited to your wound and personal situation. our goal is to help you maintain an ideal healing environment for the wound and prevent infection during the healing process. for more complex wounds, we use an innovative digital photography program. it generates comprehensive assessment information, and facilitates expert advice from an enterostomal therapist (et) with specialized knowledge and clinical skills in wound, ostomy care and continence management. foot care personal independence and comfort can be greatly affected by foot pain and problems. our nurses can help you maintain optimal foot health through our home care services. we will assess your feet and provide professional foot care that is tailored to your unique needs. we can treat corns, calluses, or ingrown nails; cut nails; assist with foot exercises; provide advice on proper shoes and pain management; or provide the specialized care you require if you have diabetes, arthritis, gout or other conditions complex care complex health needs or multiple conditions often require specialized home care support, beyond the capabilities of family caregivers. we aim to help our clients understand and live successfully with complex conditions. for example, individuals with diabetes face the challenge of managing a complicated disease and its effect on their health and quality of life. our nurses can help by teaching you about diabetes, how to give an injection or use your blood sugar testing device, support you in developing meal plans that suit your lifestyle, and put you in touch with diabetic resources in your community. end-of-life care we understand that an end-of-life situation can be complicated and different for each person and their family. our end-of-life home care is compassionate and responsive to each individual’s specific needs while respecting their cultural, religious and personal preferences. we take care of the whole person - body, mind and spirit. we gently tend to their health care needs, help them understand their health situation and, in collaboration with their medical doctor, manage their pain and other symptoms. we provide physical and emotional support to help both the individual and family cope during this difficult time. personal support & home support service description home health care our home health care provides assistance with everyday activities like grocery shopping, meal preparation, laundry and housekeeping, as well as personal hygiene activities like bathing, brushing teeth, washing hair or getting dressed. caregiver relief on occasion, you may need and benefit from a break from caring for a loved one. our home care team can step in to skillfully tend to her or his needs. your loved one will get the required support, and you get the time and freedom to rest or handle other responsibilities. services can include overnight stays. companion services for anyone, social contact and support is a vital part of health and happiness. revera provides support and companionship so that you can continue to live life to the fullest and enjoy activities that are important to you. whether it’s a walk in the park, a trip to the theatre or a quiet night at home, companionship services are designed around your schedule and your interests. (north east community care access centre-revera home health-sault ste. marie, ; revera inc., ). in-home care services organization: victoria order of nurses- algoma branch office address: phone: - - great northern rd, st floor fax: - - sault ste. marie, on email: jennifer.michaud@von.ca p a k website: toll free: - - - office hours: mon-fri am- pm (hours may differ for specific programs listed below) contact: jennifer michaud - executive director application: contact office via phone, fax, in-person, or email. eligibility: contact office via phone, fax, in-person, or email. languages: english; french speaking staff. nursing and professional programs/services service description foot care services von nurses and other health professionals provide foot care for all ages from infants to seniors. nurses provide assessment, care and advice for clients, including the elderly and people with diabetes, who have particular problems looking after their feet. care includes clipping nails, treating corns, calluses, ingrown nails and thickened nails and preventative care as well as referral to other health professionals. private duty nurse and shift nursing shift nursing brings the expertise of registered practical nurses to the home. available from a minimum of three hours to continuous hours of care, the shift-nursing program is an alternative to institutional care. the program is extremely flexible and the work is paid for on an hourly basis, on contract with the individual family or caregiver. palliative care services service description bereavement services bereavement follow-up is often a key component in palliative care. trained staff and volunteers help people who are experiencing grief and loss. bereavement services can be through home visits, drop-in care groups or support groups. volunteer services service description palliative/hospice visiting hospice volunteers are specially trained, caring, dedicated individuals who offer their knowledge and experience to help both the client and their family through the disease process, treatment and outcome of their illness. (north east community care access centre- von victorian order of nurses - algoma branch, ; victorian order of nurses, ) in-home care services organization: canadian red cross- sault ste. marie and district branch office address: phone: - - allard st fax: - - - sault ste. marie, on email: p b g website: http://www.redcross.ca/article.asp?id= &tid= toll free: - - - office hours: mon-fri : am- : pm application: contact office via phone, fax, in-person. eligibility: contact office via phone, fax, in-person. languages: english; french speaking staff. homecare services service description personal care bathing, grooming, assistance with dressing, toileting, and transfers home management meal preparation, grocery shopping, errands, light housekeeping, and laundry. home maintenance this program provides essential home repairs and upkeep for seniors and disabled adults. snow removal, yard work, major cleaning and minor exterior repairs are provided at a subsidized rate for those who qualify. volunteer service description friendly visiting canadian red cross volunteers make regular visits in the community to elderly residents who live alone. the goal of the friendly visiting program is to bring friendship, company, and appropriate activities to elderly or isolated people in need of a friend. respite and companion care service description respite and companion care caregiver/family relief and accompaniment to appointments. (north east community care access centre- canadian red cross - sault ste. marie and district branch, ; canadian red cross-sault ste. marie, ) in-home care services organization: bayshore home health care- sault ste. marie office address: phone: - - bay st, ste fax: - - sault ste. marie, on email: saultstemarie@bayshore.ca p a x website: www.bayshore.ca toll free: - - - office hours: mon-fri : am- : pm service hours: hours application: referred through the north east community care access centre or a self-referral eligibility: contact office. languages: english; french speaking staff. homecare services service description nursing offering pediatric to palliative care, bayshore home health's nurses deliver the highest quality of care in our clients’ homes. this includes:  administering medication  changing dressings  advanced foot care  intravenous therapy  pain and symptom management  chronic disease management and therapy  ventilator care  peritoneal dialysis  serious injury care personal care bayshore home health’s personal care services enable clients to live independently in their homes. our specially trained staff can help with:  personal hygiene care such as grooming, washing and bathing  basic hand and foot care  dressing  assistance with eating  helping clients move safely into chairs, beds or vehicles home support bayshore home health makes living at home easier for individuals who need assistance with routine household activities. we provide services that include:  light housekeeping  meal preparation  laundry  escorting clients on shopping trips and appointments companionship service description companionship for individuals who live alone and are feeling isolated, our caregivers provide companionship through personal visits to the home to share a cup of tea or go for a walk. they also accompany clients on outings or special events. respite relief service description respite relief respite relief for families members or care givers caring for an individual in need of full time care (bayshore healthcare ltd., ) in-home care services organization: f.j. davey home office address: phone: - - third line east fax: - - sault ste. marie, on email: p a c website: www.fjdaveyhome.org hours: hours for each service listed below. application: self-referral eligibility: as listed for each service below languages: english; french speaking staff. meal delivery service description meals on wheels contact: ext lea de vries-bothwell hours: mon-fri am- : pm meals-on-wheels provides seniors, persons convalescing and persons with disabilities with hot, nutritious meals five days a week to maintain a balanced diet, proper nutrition and to enhance their social contact and safety. meals on wheels aims to:  maintain a healthy and balanced diet  increase independence and help persons remain in their home longer  help decrease feelings of isolation and insecurity by providing persons served with regular social contact  meals are delivered by a network of caring and dedicated volunteers and new volunteers are always welcome. (f.j. davey home, ) in-home care services organization: shoppers home health care- sault ste. marie office address: phone: - - pim st fax: - - sault ste. marie, on email: p b v website: www.shoppersdrugmart.ca toll free: - - - hours: mon-fri : am - pm * sat am- pm application: self-referral eligibility: contact office. languages: english. service description medical equipment sells, rents and services orthopaedic and health care aids including  mastectomy products  home oxygen and respiratory services  hospital beds  wheelchairs  bathroom aids  hydraulic lifts  supplies for ostomate provides consumers with the opportunity to set up a temporary, safer environment without experiencing costly renovations or the inconvenience of moving (north east community care access centre- shoppers home health care, ) in-home care services organization: we care home health services- sault ste. marie branch office address: phone: - - east st fax: - - sault ste. marie, on website: www.wecare.ca p a c toll free: - - - office hours: mon-fri am- pm service hours: / application: apply through your local community care access centre * self-referral - telephone eligibility: contact office. languages: english ; french ; italian. finish ; ukranian staff - no services. home health services service description personal care we care provides personal support for everyday activities such as getting in and out of bed, bathing and dressing, to dental hygiene or grooming. home making this service provides assistance with the day-to-day tasks that are required in the upkeep of a household, including dusting and cleaning, laundry and meal preparation. companion services our caregivers are available for individualized activities such as visiting, playing cards, reading a book, or sharing a hobby. we can also help care for a pet or take walks in the neighbourhood. nursing our qualified personnel are available to assist with administering medication, changing dressings, intravenous therapy, pain and symptom management, chronic disease management and therapy, foot care, ventilator care, and serious injury care. foot care we also have nurses who are able to provide advanced foot care. regular foot care will significantly improve comfort, mobility and the general health of your feet. this is particularly important for people with diabetes because regular foot care can prevent problems and assist in early identification and care if problems do occur. accompanied visits we are available to accompany and/or transport your loved ones to personal or doctor’s appointments, religious or cultural events, shopping or even an unplanned outing. caregiver relief we are dedicated to providing relief for family caregivers – from a few hours a day to around the clock care. our caregivers are trained to tend to the needs of your loved ones while you attend to other responsibilities and obligations, or just put your feet up and relax for a while to rejuvenate. live-in care if there is ever a time you require constant support, our caregivers will provide the personal and domestic care, and the companionship you need on an around-the-clock basis. (north east community care access centre- we care home health services - sault ste. marie branch, ; we care health services-health at home services, ). in-home care services organization: alzheimer society - sault ste. marie and algoma district office address: phone: - - trunk rd fax: - - sault ste. marie, on email: info@alzheimeralgoma.org p a s website: www.alzheimeralgoma.org toll free: - - - office hours: mon-fri : am- : pm application: contact office. eligibility: contact office. languages: english; french speaking staff - no service service description in-home recreational therapy provides in-home individualized recreation therapy to people affected by dementia. recreation and leisure are important for us all, and appropriate recreational activities are integral to improving/optimizing quality of life for persons with dementia. our recreation therapists will work with persons with dementia and their care partners to develop a flexible, client-focussed recreation treatment program that accommodates all stages and abilities. volunteer visiting program volunteers visit clients in their home one or two hours a week to offer socialization and stimulating activities. in this program, alzheimer society volunteers visit with persons with dementia to provide companionship, activation, and socialization. volunteers are specially trained, screened, and matched in order to provide a positive experience for both parties (alzheimer society of canada, ) sector : community support services map community support services transportation services for seniors with specific needs emergency planning vulnerable persons registry public works and transportation- transit services canadian red cross - sault ste. marie and district branch canadian cancer society - algoma unit sault area hospital seniors mental health services alzheimer society - sault ste. marie and algoma district canadian cancer society - algoma unit social/ recreational senior citizens' drop- in centre steelton senior citizens' centre royal canadian legion, branch education, awareness, prevention adult day care victoria order of nurses- algoma branch we care home health services f.j. davey home victoria order of nurses- algoma branch algoma public health sector : community support services inventory transportation community support services organization (transportation): public works and transportation- transit services office address: phone: - - huron st fax: - - sault ste. marie, on email: p a p website: www.city.sault-ste-marie.on.ca office hours: mon-fri : am- : pm parabus hours: mon-fri : am- am * sat : am- am * sun am- pm regular bus hours: mon-fri : am- : am * sat-sun : am- : pm community bus hours: mon-fri : am- : pm transcab hours: mon-fri, : am- : am * : - : pm * application: self-referral eligibility: parabus transit: must be deemed disabled by a medical professional. languages: english. service description parabus offers curb to curb transit for individuals with physical disabilities. provides wheelchair accessible transportation. regular transit transports individuals to and from designated bus stops. provides wheelchair accessible transportation. community bus offers transportation to the public including seniors and individuals with special needs. offers evening preferred stop program which allows passengers to be dropped off at specific locations such as malls, libraries, casinos, grocery store etc.. provides wheelchair accessible transportation. transcab offers transportation of individuals to and from designated stops. offers preferred stop program transports individuals to and from their driveways. (north east community care access centre- sault ste. marie, city of - public works and transportation - transit services, ) community support services organization (transportation): canadian cancer society - algoma unit office address: phone: - - mcnabb st fax: - - sault ste. marie, on email: algoma@ontario.cancer.ca p b z website: www.city.sault-ste-marie.on.ca toll free: - - - office hours: mon-fri : am- : pm application: referral from doctors * cancer centre * call ins eligibility: cancer patients and their caregivers. languages: english; french speaking staff - no service service description transportation a national organization of volunteers which funds research on all types of cancers and provides services such as:  provides transportation and to individuals travelling to local or out of town cancer-related appointments (north east community care access centre- canadian cancer society - algoma unit, ) community support services organization (transportation): canadian red cross - sault ste marie and district branch office address: phone: - - allard st fax: - - - sault ste. marie, on email: p b g website: www.redcross.ca toll free: - - - office hours: mon-fri : am- : pm application: contact office. eligibility: contact office. languages: english; french. service description transportation the canadian red cross provides transportation for the frail, elderly and disabled in the community. the service is for those unable to use public transportation or private means. we provide reliable transportation to and from medical appointments, shopping and rehabilitation programs. (north east community care access centre- canadian red cross - sault ste. marie and district branch, ; canadian red cross-sault ste. marie, ) services for seniors with specific needs community support services organization (specific needs): alzheimer society - sault ste. marie and algoma district office address: phone: - - trunk rd fax: - - sault ste. marie, on email: info@alzheimeralgoma.org p a s website: www.alzheimeralgoma.org toll free: - - - office hours: mon-fri : am- : pm application: contact office. eligibility: contact office. languages: english; french speaking staff - no service service description caregiver support offers support to family and those with alzheimer’s to maintain and increase feelings of self-worth and control by sharing common problems client support offers support to those with alzheimer’s on an individual or in group settings which allows people to share their experiences and concerns medicalert safely home - wandering registry the alzheimer society is partnering with the canadian medicalert foundation to improve the safely home program, incorporating the best features of both safely home and medicalert services. people with dementia may lose the ability to recognize familiar places, to communicate or to remember their own name or address. they may leave home, become confused and get lost. medicalert safely home is a nationwide program designed to help identify the person who is lost and assist in a safe return home. members receive an engraved identification (over styles of ids available including bracelets, necklaces, watches and more), which allows police and emergency responders to quickly identify the person who has wandered and bring the family back together. call - - -  to sign up for medicalert safely home  to update your existing record  for more information education and awareness in addition to the first link® learning series for people with dementia and their care partners, we provide customized education programs to a wide variety of target groups. training sessions, workshops, and public presentations are available on many dementia-related topics. examples of various workshops/presentations and their target audiences include:  gentle persuasive approaches (gpa) in dementia care – a one- day workshop for health care workers in a variety of care settings  u-first! – a one-day workshop for front-line health care workers in a variety of care settings  healthy brain – a one hour presentation for the members of the public who are interested in maintaining their brain health  church groups – a presentation for members of congregations who are interested in learning about supporting their members who are experiencing memory loss  grade presentation – a one-hour presentation designed to increase children's understanding of alzheimer's disease, methods of keeping the brain healthy, and the value of older persons in our society first link first link is a program that links persons with dementia and their care partners to coordinated learning, services, and support from the point of diagnosis throughout the continuum of the disease. after a referral has been made, the first link coordinator will:  offer dementia education and ongoing support for the person with dementia and family members;  assess for other alzheimer society programs (e.g., safely home®, recreation therapy, volunteer visiting, behaviour support);  make referrals to other appropriate community services. supportive counselling our professional staff will meet with the person with dementia and/or their care partners, in person or by phone, to discuss issues such as disease progression, care options, and community services. meetings can take place either in our office or in the individual's home. support groups we have groups specially designed for those with dementia, and others that are specific for care partners. groups are an excellent way to learn more about the disease as well as receive peer support and professional guidance. groups are normally held monthly cogitative assessments the alzheimer society does not support broad population-based cognitive screening, and therefore will conduct cognitive assessments only where risk factors have been identified. age alone is not sufficient reason to conduct cognitive assessment. our professional staff will provide cognitive assessment when referred by a primary care practitioner or when requested by the client as a result of a perceived change in cognitive ability. behaviour support behaviour supports ontario is a province-wide initiative that aims to improve quality of life for persons with dementia and their care partners by helping to manage responsive behaviours. our behaviour support facilitator can assist with responsive behaviours through activities such as behaviour mapping and caregiver education. at-risk driver program the at risk driver program in sault ste. marie provides families and caregivers an opportunity to strengthen the safety net for the person with dementia whose license has been revoked yet continues to drive. a concerned caregiver can register the individual in the at risk driver program. the person who is registered will be flagged in the police database as someone of "special interest to police". the police will identify the individual as cognitively impaired and will contact the person listed on the registration form to help ensure that the driver is returned home safely. (alzheimer society of canada, ) community support services organization (specific needs): sault area hospital seniors mental health services office address: phone: - - bay st, th floor fax: - - sault ste. marie, on email: publicaffairs@sah.on.ca p a x website: www.sah.on.ca office hours: mon-fri am- pm contact: don burditt- manager application: client, client’s family, physicians and other care providers can make referrals. eligibility: anyone who is years and older that is having difficulties with his/her mental health. the services are available within sault ste. marie and the district of algoma. languages: english; french speaking staff - no service service description senior mental health services seniors mental health services is a team that includes nurses, a social worker, and an occupational therapist. the team:  provides non-emergency, mental health services to older adults, their families and service providers in the community and/or long term care facility settings.  contributes to and supports community development activities for seniors with mental health needs.  assessments- of mental health status using approved standard screening tools. assessments can take place i the home or long term care facilities.  education- on topics related to mental issues in the elderly, to client caregivers and health care professionals.  recommendations- to families and clients on how to maintain independence within a safe environment.  liaison- with physicians, agencies, and other appropriate health care professionals. (sault area hospital- programs & services, ). community support services organization (specific needs): canadian cancer society - algoma unit office address: phone: - - mcnabb st fax: - - sault ste. marie, on email: algoma@ontario.cancer.ca p b z website: www.city.sault-ste-marie.on.ca toll free: - - - office hours: mon-fri : am- : pm application: referral from doctors * cancer centre * call ins eligibility: cancer patients and their caregivers. languages: english; french speaking staff - no service service description cancer support a national organization of volunteers which funds research on all types of cancers and provides services such as:  offers support to individuals living with cancer, family members and friends  offers presentations and displays to community groups focusing on healthy living, general risk reduction and cancer related information  provides telephone support with individuals who have had similar experiences  offers adult group support in many communities to individuals and their caregivers. (north east community care access centre- canadian cancer society - algoma unit, ) emergency planning community support services organization (emergency planning): vulnerable persons registry office address: phone: - - ext queen street e. bt fax: sault ste. marie, on email: info@soovpr.com p a g website: www.soovpr.com/ office hours: mon-fri am- pm contact: don burditt- manager application:  community agencies: clients can register in person with their agency ; please contact the agency to learn how you can register (home visits or agency).  anyone can register in person at: accessibility centre; canadian red cross.  register from home: online  mail: print the registration form and mail the completed form to the address provided above and to the vpr’s attention.  registration kit: if none of the registration methods above are accessible, please either contact the vpr coordinator to request that a registration kit be mailed directly to your home or click here to email a request. eligibility: any sault ste. marie resident without -hour support who experiences severe difficulty with any of the following: mobility, vision, or hearing; developmental/intellectual, cogitative or mental health. any resident living at home who needs any of the following: electricity for life- sustaining equipment; life support, oxygen, dialysis, etc. languages: english. service description vulnerable persons registry the vulnerable persons registry (vpr) is a free, voluntary and confidential service aimed at improving the safety of sault ste. marie residents living at home who would be at greater risk during emergencies. the vpr improves safety by providing key information to local fire, police, paramedics and where authorized, puc inc. and canadian red cross, in order to help them be more aware when addressing emergencies. (sault ste. marie innovation centre, ). adult day care community support services organization (adult day care): f.j. davey home office address: phone: - - third line east fax: - - sault ste. marie, on email: p a c website: www.fjdaveyhome.org hours: hours for each service listed below. application: self-referral eligibility: as listed for each service below languages: english; french speaking staff. respite care service description adult day away program contact: ext , adultdayprogram@fjdaveyhome.org hours: monday to friday : am to : pm the program, operated in dedicated space within the f.j. davey home, provides adult day care for people with dementia (memory loss). it offers supervised activities in a home like setting under the direction of professional staff who have special education in the care of people with memory loss. activities provided include games, fun & fitness, music, bowling/golf, baking, crafts and more. the program has a secure, dedicated outdoor space with a raised garden area. clients plant and tend the garden and produce grown is used in the preparation of lunches. goals:  to meet and maintain the individual needs of the client, enhancing & reinforcing basic living skills.  to provide respite for the caregiver.  to promote active community involvement. a nominal daily fee is charged to cover the cost of two snacks, lunch and activity supplies. (f.j. davey home, ) community support services organization (adult day care): victoria order of nurses- algoma branch office address: phone: - - great northern rd, st floor fax: - - sault ste. marie, on email: jennifer.michaud@von.ca p a k website: toll free: - - - office hours: mon-fri am- pm (hours may differ for specific programs listed below) contact: jennifer michaud - executive director application: contact office via phone, fax, in-person, or email. eligibility: contact office via phone, fax, in-person, or email. languages: english; french speaking staff. community support services service description adult day centre hours: monday, wednesday, & friday : am to : pm designed to provide respite for family caregivers and to support and maintain client health, ability and independence, these programs are an opportunity for the frail, elderly, disabled or cognitively impaired adult to make friends. activity workers and volunteers coordinate activities such as exercise classes, card and word games, communal outings and crafts. programs offered:  crafts  exercise  games  outings  health/wellness  story sharing  socializing  music/songs (north east community care access centre- von victorian order of nurses - algoma branch, ; victorian order of nurses, ). social/recreational community support services organization (social/recreational): senior citizens' drop-in centre site address: phone: ( ) - bay street fax: ( ) - sault ste marie, on email: c.johnson@cityssm.on.ca p a x website: http://www.cityssm.on.ca/article_page.aspx?id= &deptid= office hours: monday to friday from : a.m. to : p.m with evening and weekend bookings by request. application: none. eligibility: none. languages: english. service description senior citizens' drop-in centre the centre works in cooperation with an advisory council comprised of representatives from local seniors' organizations. programs offered encompass the areas of active living, arts & crafts, educational, bus trips, special events and health related services. the centre is easily accessible by car or city bus. there is an enclosed bus shelter at the front of the centre and parking is available at the rear of the building. services offered include:  trained staff who are available to answer questions regarding senior citizens services. inquires are handled by phone or directly at the centre.  community liaison with local senior groups and agencies within sault ste. marie.  the senior circular -- a newsletter published by the senior citizen advisory council.  health related services provided by community agencies on site.  unique summer events are planned by students who operate the up, out and away program  senior games, an annual weeklong event hosting sixteen events to promote healthy active living, fun and fellowship.  volunteers are always welcome and encouraged to ensure the success of programs.  personal tours of the facility can be arranged upon request. (corporation of the city of sault ste. marie- drop in centre, ) http://www.cityssm.on.ca/article_page.aspx?id= community support services organization (social/recreational): steelton senior citizens' drop-in centre site address: phone: ( ) - wellington street west fax: sault ste marie, on email: website: http://www.cityssm.on.ca/article_page.aspx?id= &deptid= office hours: monday to friday from : a.m. to : p.m., wednesday evenings from : to : p.m. and thursday evenings from : to : p.m. other evenings and weekends by request. application: none. eligibility: none. languages: english. service description senior citizens' centre programs offered encompass the areas of active living, educational, bus trips, arts and crafts, special events and health services. there is an enclosed bus shelter only a few steps away from the centre’s front door. there is limited parking on site. additional spaces are available in the city lot opposite the centre on wellington street. staff work in co-operation with the host senior club to provide programs and services relative to the needs of the seniors utilizing the facilities. trained staff are on site at all times available to assist seniors and to answer questions about services. a monthly flyer providing information on services and upcoming programs is available free of charge. (corporation of the city of sault ste. marie- steelton centre, ) community support services organization (social/recreational): royal canadian legion, branch site address: office: - - great northern rd fax: - - sault ste marie, on email: p b y website: www.branch rcl.com lounge: - - ladies auxiliary: - - office hours: mon - fri am to pm lounge hours: mon - thu pm to pm, fri & sat pm to am, closed sundays application: can become a member by downloading a printable membership application, or visiting the office. eligibility: contact office. languages: english. service description royal canadian legion, branch our mission is to serve veterans and their dependents, promote remembrance and act in the service of canada and its communities. types of activities:  senior’s dance  acoustic jam night  carpet bowling  bingo  meat draw  pool  karaoke friday’s  ladies auxiliary  other (royal canadian legion, branch , ) education, awareness, prevention community support services organization (education, awareness, prevention): we care home health services- sault ste. marie branch office address: phone: - - east st fax: - - sault ste. marie, on email: p a c website: www.wecare.ca toll free: - - - office hours: mon-fri am- pm service hours: / application: apply through your local community care access centre * self referral - telephone eligibility: contact office. languages: english ; french ; italian. finish ; ukranian staff - no services. community health services service description advance foot care the we care advanced foot care program significantly improves comfort, mobility and the general health of a person’s feet through programs delivered in community centres, senior’s homes and pharmacies. the program, which is delivered by an advanced footcare nurse, has been approved by veterans affairs canada and has proven to identify problems earlier and prevent further complications. many people are enjoying renewed mobility and higher quality of living thanks to interventions at the right time by the right provider. health risk assessment the health risk assessment is a comprehensive tool designed to assess the current health status and potential future risks of an individual. we care's health risk assessment includes: •a minute, private interview with a registered nurse •a custom tailored questionnaire called the health risk assessment personal risk profile •clinical measurements - blood pressure, pulse, height, weight, hip: waist ratio, blood sugar test and blood cholesterol test diabetes awareness clinics this customized clinic aims at early identification and reduction of cardiovascular risks associated with the development of diabetes. we care’s diabetes awareness clinics are delivered by registered staff. these clinics can be customized with the following options: • blood glucose test • a c glucose test • blood pressure & pulse • foot assessment wellness clinics we care’s cardio wellness program supports cardiac risk reduction and lifestyle management through clinical measurement and one- on-one education provided by a registered staff member. the program can be customized with the following options: • blood pressure and pulse • total cholesterol screening • ldl & hdl lab quality screening • body fat analysis • bmi measurement • height and weight measurement immunization programs research recognizes the strong link between immunization and the prevention of serious health problems. we care immunization clinics may include influenza, hepatitis, tuberculosis and tetanus. our clinics offer: • information on the benefits and risks of the vaccination prior to the immunization clinic • all necessary documentation including a questionnaire, consent and post-clinic information sheet • referral of high risk clients to their family doctor • educational and health promotional material osteoporosis screening-bone density & education osteoporosis affects . million canadians. the we care osteoporosis program utilizes a clinical bone sonometer, an ultrasound machine that scans the heel for bone weakness. results are produced in seconds, indicating a low, medium or high risk for developing osteoporosis. based on the results, trained nurses provide individualized recommendations on diet, exercise and lifestyle changes or possible referral to their doctor for more detailed testing. other speciality and targeted wellness clinics in addition to the above, we care offers other specialty wellness solutions that address a variety of common health concerns. •healthy heart - blood pressure, body fat & cholesterol screening •breathing easy - health teaching and information on asthma & copd •summer living - west nile virus, skin cancer and sun stroke awareness •woman's wellness - personal health history & individualized health teaching (north east community care access centre- we care home health services - sault ste. marie branch, ; we care health services-health in the community services, ). community support services organization (education, awareness, prevention): victoria order of nurses- algoma branch office address: phone: - - great northern rd, st floor fax: - - sault ste. marie, on email: jennifer.michaud@von.ca p a k website: toll free: - - - office hours: mon-fri am- pm (hours may differ for specific programs listed below) contact: jennifer michaud - executive director application: contact office via phone, fax, in-person, or email. eligibility: contact office via phone, fax, in-person, or email. languages: english; french speaking staff. community support services service description caregiver support health promotion/ education services von provides information, emotional support and education to family caregivers. participants gain hope and insight through the experiences of other caregivers and build a network of support. a series of videos is used to encourage reflection and discussion. wellness and health promotion clinics held in public places such as pharmacies or community events, von wellness and health promotion clinics offer clients screening tests and assessment of cholesterol, blood pressure, body-mass index and other indicators of potential health problems. individual counselling focuses on education and raising awareness on topics such as heart health, diabetes, asthma, allergies and osteoporosis. immunization a von registered nurse can give vaccinations in the workplace or other community settings. immunization programs include flu shots, hepatitis, tetanus and diphtheria, pneumonia, chickenpox, and meningitis. (north east community care access centre- von victorian order of nurses - algoma branch, ; victorian order of nurses, ). community support services organization (education, awareness, prevention): algoma public health site address: phone: - - willow ave fax: - - sault ste marie, on email: website: www.algomapublichealth.com/ toll free: - - - office hours: mon-fri : am- : pm application: appointment required for most services eligibility: see description for services listed below. languages: english. service description nursing offers clinical nursing services focusing on health promotion, public education and a healthy lifestyle such as immunization records and clinics. chronic disease prevention  work with community agencies to provide the public with information and skills to facilitate the adoption of healthy lifestyles for the prevention of chronic diseases.  work to implement healthy policies and programs  help to create and enhance supportive environments to address healthy eating, healthy weights, comprehensive tobacco control, physical activity, alcohol use, stress and exposure to ultraviolet radiation. vaccine preventable diseases  work to reduce the incidence of vaccine preventable diseases in our community  provide travel vaccines to the public  provide publically funded vaccines to ontario residents (influenza vaccine). (algoma public health- programs and services pamphlet, n.d.) sector : primary care/allied health/specialized services primary care/allied health/specialized services primary care/allied health algoma nurse practitioner-led clinic superior family health team baawaating family health team merrett’s ida pharmacy ideal ida drug mart rexall- second line west rexall- second line west metro pharmacy- northern avenue metro pharmacy- churchill plaza rexall- trunk road rexall- east street the medicine shoppe medical centre ida pharmacy market mall ida pharmacy rome’s drugstore pharmacy prescription centre (sault) ltd shopper’s drug mart - cambrian mall shopper’s drug mart - second line station mall ida drug mart wal-mart pharmacy wellington square drug mart ida shoppers home health care sault area hospital walk-in clinic (fast track) sault care walk in clinic group health centre geriatric specialists services public health group health centre north east specialized geriatric services algoma public health sector : primary care/allied health/specialized services inventory pharmacy primary care/allied health/specialized services organization (pharmacy): shoppers home health care- sault ste. marie office address: phone: - - pim st fax: - - sault ste. marie, on email: p b v website: www.shoppersdrugmart.ca toll free: - - - hours: mon-fri : am - pm * sat am- pm application: self-referral eligibility: contact office. languages: english. service description pharmaceutical services provides various pharmaceutical services including:  ontario trillium drug plan application kit  educational materials and health consultations  basic home health care supplies  blister packaging  sells prescription medication as well as over the counter medication  in-store health and wellness clinics  operated the assistive devices program (adp) with application forms available upon request  offers van conversions for individuals with disabilities  offer medscheck by appointment for those who qualify (north east community care access centre- shoppers home health care - sault ste. marie, ). primary care/allied health/specialized services organization (pharmacy): metro pharmacy- northern avenue office address: phone: ( ) - northern ave e fax: sault ste. marie, on email: info@soovpr.com website: http://metro.ca/on/expert-advice/pharmacy- expert/pharmacy-services.en.html office hours: monday to friday : am- : pm, saturday : am- : pm, sunday : am- : pm languages: english. service description pharmacy our pharmacy team offers total patient-focused care. we are committed to serving all of your health care needs, including:  on-site blood pressure monitoring  personalized nutrition consultations  personalized medication reviews  lung function assessments  skin hydration assessments  medicine cabinet clean-up and disposal services  medication reminder tools and services (blister packaging)  with each prescription you will receive a personalized up-to- date medical profile for your own records. this is useful in the event of an emergency as it helps medical personnel quickly find out what medications you are taking.  speak to our pharmacists for more information on our health and wellness programs and find out how to transfer your prescriptions…it’s easy and hassle-free. (metro richelieu inc., ; group health centre-pharmacies, ) http://metro.ca/on/expert-advice/pharmacy- primary care/allied health/specialized services organization (pharmacy): metro pharmacy- churchill plaza office address: phone: ( ) - churchill blvd. fax: sault ste. marie, on email: p a z website: http://metro.ca/on/expert-advice/pharmacy-expert/pharmacy- services.en.html office hours: monday to friday : am- : pm, saturday : am- : pm, sunday : am- : pm languages: english. service description pharmacy our pharmacy team offers total patient-focused care. we are committed to serving all of your health care needs, including:  on-site blood pressure monitoring  personalized nutrition consultations  personalized medication reviews  lung function assessments  skin hydration assessments  medicine cabinet clean-up and disposal services  medication reminder tools and services (blister packaging)  with each prescription you will receive a personalized up-to- date medical profile for your own records. this is useful in the event of an emergency as it helps medical personnel quickly find out what medications you are taking.  speak to our pharmacists for more information on our health and wellness programs and find out how to transfer your prescriptions…it’s easy and hassle-free. (metro richelieu inc., ; group health centre-pharmacies, ) :/metro.ca/on/expert-advice/pharmacy-expe primary care/allied health/specialized services organization (pharmacy): rexall- trunk road office address: phone: - - trunk road fax: - - sault ste. marie, on email: p a s website: http://www.rexall.ca/storelocator/results?longitude= . &latitude=- . &location=sault ste. marie office hours: mon-fri : am - : pm, saturday : am - : pm, sunday : am - : pm languages: english. service description pharmacy  a c diabetes test  beauty consultants  blood pressure screening  digital photo centre  drive thru  flu shot  groceries  hemocode food intolerance system  home health care  lottery  medication reminder e-mails (efill)  online refill  open until pm  private consultation room  specialty compounding (katz group canada ltd., ) primary care/allied health/specialized services organization (pharmacy): rexall- east street office address: phone: - - east street fax: - - sault ste. marie, on email: p a c website: http://www.rexall.ca/storelocator/results?longitude= . &latitude=- . &location=sault ste. marie office hours: mon-fri : am - : pm languages: english. service description pharmacy  a c diabetes test  flu shot  medication reminder e-mails (efill)  online refill  specialty compounding (katz group canada ltd., ) primary care/allied health/specialized services organization (pharmacy): rexall- second line west office address: phone: - - second line west fax: - - sault ste. marie, on email: p c j website: http://www.rexall.ca/storelocator/results?longitude= . &latitude=- . &location=sault ste. marie office hours: mon-fri : am - : pm, saturday : am - : pm, sunday : am - : pm languages: english. service description pharmacy  a c diabetes test  atm  beauty consultants  blood pressure screening  drive thru  flu shot  free prescription delivery  hemocode food intolerance system  lottery  medication reminder e-mails (efill)  nutrition consultation & vitamin therapy  online refill  open until pm  private consultation room (katz group canada ltd., ) primary care/allied health/specialized services organization (pharmacy): rexall- second line west office address: phone: - - second line west fax: - - sault ste. marie, on email: p c k website: http://www.rexall.ca/storelocator/results?longitude= . &latitude=- . &location=sault ste. marie office hours: mon-fri : am - : pm, saturday : am - : pm languages: english. service description pharmacy  accreditation support  clinical programs and education  continuous quality improvement programs  free prescription delivery  medication safety initiatives  specializing in senior and specialty pharmacy care  specialty compounding  state-of-the-art medication packaging (katz group canada ltd., ) primary care/allied health/specialized services organization (pharmacy): ideal ida drug mart- wellington street w office address: phone: - - wellington street west fax: - - sault ste. marie, on email: p a p hours: m-f - , sat - , sun closed languages: english. service description pharmacy  training provided by pharmacist  private medical counseling room or area  insulin instruction available on pens and syringes  brands of pens available at no cost  trillium drug program - financial assistance program  medication available in blister packs free of charge  blood pressure machine, calibrated at least every six months  delivery available anytime - daily  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): market mall ida pharmacy office address: phone: - - second line w fax: - - sault ste. marie, on email: p c j hours: open m-f - , sat - , sun - languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist  private medical counseling room or area  insulin instruction available on pens and syringes  blood pressure machine, calibrated at least every six months  brands of pens available at no cost  trillium drug program and monitoring for health -financial assistance programs  medication available in blister packs at no charge  insulin pump supplies available  delivery available - all store hours except sundays  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): medical centre ida pharmacy- queen street e office address: phone: - - queen street east fax: - - sault ste. marie, on email: p a c hours: open m-f - , closed weekends languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist or pharmacy technician  private medical counseling room or area  insulin instruction available on pens and syringes  brands of pens available at no cost  trillium drug program and monitoring for health -financial assistance programs  medication available in blister packs at no charge  blood pressure machine, calibrated at least every six months  in store “diabetes day” - times per year  delivery available am- pm  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): the medicine shoppe- second line w office address: phone: - - second line w fax: - - sault ste. marie, on email: dalmac@shawcable.ca p c j hours: open m-f - , sat - , closed sun languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist or pharmacy technician  private medical counseling room or area  insulin instruction available on pens and syringes  brands of pens available at no cost  trillium drug program and monitoring for health -financial assistance programs  medication available in blister packs at no charge  blood pressure machine, calibrated at least every six months  in store “diabetes day” - times per year  delivery available am- pm  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): merrett’s ida- wellington street w office address: phone: - - wellington st. w fax: - - sault ste. marie, on email: p a j hours: open m-f - , sat - , closed sun languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist  private medical counseling room or area  insulin instruction available on pens and syringes  blood pressure machine, calibrated at least every six months.  brands of pens available at no cost  trillium drug program -financial assistance program  medication available in blister packs - regular co-pay no additional fees  insulin pump supplies available  in store diabetes day - times/year  delivery available am- pm  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): prescription centre (sault) ltd.- queen street e office address: phone: - - queen st. e fax: - - - sault ste. marie, on email: p a c hours: open m-f - , sat - , closed sun languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist or pharmacy student  private medical counseling room or area  insulin instruction available on pens and syringes  brands of pens available at no cost  trillium drug program and monitoring for health -financial assistance programs  medication available in blister packs at no charge  insulin pump supplies available by request  delivery available am- pm  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): rome’s drugstore pharmacy- great northern road office address: phone: - - - great northern rd fax: - - sault ste. marie, on email: p b y hours: open m-f - , sat - , sun - languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist  private medical counseling room or area  insulin instruction available on pens and syringes  brands of pens available at no cost  trillium drug program and monitoring for health -financial assistance programs  medication available in blister packs $ . per week  blood pressure machine  delivery available anytime $ . charge  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) can order things they don’t have (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): shopper’s drug mart - cambrian mall office address: phone: - - great northern rd fax: - - sault ste. marie, on email: p b y hours: open m-sat am-midnight, sun am-midnight languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist  insulin instruction available on pens and syringes  brands of pens available at no cost  trillium drug program & monitoring for health -financial assistance programs  medication available in blister packs at no charge  in store “diabetes day” - times yearly  blood pressure machine, calibrated at least every six months  delivery available daily from am to pm  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): shopper’s drug mart - second line office address: phone: - - second line w fax: - - sault ste. marie, on email: p c j hours: open m-f am- pm, sat & sun am- pm languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist  insulin instruction available on pens and syringes  brands of pens available at no cost  trillium drug program & monitoring for health -financial assistance programs  in store “diabetes day” - times yearly  blood pressure machine, calibrated at least every six months  medication not available in blister packs  delivery available throughout store hours  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): station mall ida drug mart office address: phone: - - bay street fax: - - sault ste. marie, on email: p a x hours: open m-f : - , sat., : - , sun. - languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist  private medical counseling room or area  insulin instruction available on pens and syringes  brands of pens available at no cost  trillium drug program - financial assistance program  medication available in blister packs at no additional charge  in store diabetes day - times yearly  delivery available : am - : pm  blood pressure machine, calibrated at least every six months  canadian diabetes association literature available  sells diabetic supplies (eg: socks, lotions, etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): wal-mart pharmacy- great northern road office address: phone: - - great northern rd fax: - - sault ste. marie, on email: p b z hours: open m-f - , sat - , sun - languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist  insulin instruction available on pens  blood pressure machine  brands of pens available at no cost  trillium drug program -financial assistance program  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): wellington square drug mart ida office address: phone: - - trunk rd fax: - - sault ste. marie, on email: p a t hours: open m-f - , sat - , sun closed languages: english. service description pharmacy  glucose meter sales, trade in and training  training provided by pharmacist  insulin instruction available on pens and syringes  brands of pens available at no cost  trillium drug program - financial assistance program  in store “diabetes day” once yearly  blood pressure machine  delivery available throughout store hours  canadian diabetes association literature available  sells diabetic supplies (eg. socks, lotions etc.) (group health centre- pharmacies, ) primary care/allied health/specialized services organization (pharmacy): group health centre-mcnabb main site address: general phone: - - mcnabb street general fax: - - sault ste. marie, on general email: inquiries@ghc.on.ca p b y website: www.ghc.on.ca toll free: - - - note: specific address and contact information for each program/service is listed below. hours: specific information about service hours for each program/service is listed below. application: specific application information for each program/service is listed below. eligibility: specific eligibility information for each program/service is listed below. languages: english. service description pharmacy phone: . . or . . fax: . . hours: weekdays (except statutory holidays) am to pm. saturdays: am to pm. sundays: closed eligibility: open to the general public. description: the group health centre pharmacy provides convenient shopping hours for our members and others requiring medication and other medical supplies. primary care/allied health primary care/allied health/specialized services organization (primary care/allied health): group health centre main site address: general phone: - - mcnabb street general fax: - - sault ste. marie, on general email: inquiries@ghc.on.ca p b y website: www.ghc.on.ca toll free: - - - note: specific address and contact information for each program/service is listed below. hours: specific information about service hours for each program/service is listed below. application: specific application information for each program/service is listed below. eligibility: specific eligibility information for each program/service is listed below. languages: english. service description algoma breast health program/ontario breast screening program phone: . .- toll free: . . . fax: . . hours: monday to friday, am to pm application: obsp appointments are available by provider or self- referral. all other mammography appointments require provider referrals. eligibility: this program is open to the general public. description: group health centre, the sault area hospital and the ontario breast screening program (obsp) are partners in a unique community-based program that has reduced the time to diagnose breast diseases including cancer. our diagnostic imaging department is the site for the algoma breast health program (abhp), a community based, comprehensive program that provides complete breast health care for residents of the algoma district. algoma diabetes education and care program (adec location: willow avenue, sault ste. marie, on p b b phone: . . fax: . . hours: monday to friday : am to : pm application: self-referrals are accepted as well as referrals from your primary health care provider. eligibility: this program is open to the general public description: we offer the following services and tests for adults and children with diabetes:  individual or group counselling appointments if you are newly diagnosed with diabetes or simply require more information  emergency appointments  insulin / oral medication adjustment (with a signed medical directive)  insulin starts; flexible insulin therapy (fit) program / multiple daily injections (mdi)  insulin pump information and program  foot care  classes on a variety of topics including: stress/relaxation; cholesterol and label reading.  gestational diabetes education/treatment.  community health promotion activities and diabetes awareness to service groups, schools and other health care agencies. algoma hepatitis c program location: st floor, queen street east, sault ste. marie, on p a y phone: . . toll free: . . .hepc ( ) fax: . . hours: : am to noon and : - : pm application: referrals from primary care providers or self-referrals are accepted. description: the algoma hepatitis c program includes a specially trained social worker, support worker and two nurses who help people with hepatitis c (and co-infected patients with hep b or hiv) get the nursing care and support that they require to complete their treatment program and lead healthier and more active lives. the goal of the algoma hepatitis c program is to increase treatment capacity, particularly in under-serviced communities and where the prevalence of hepatitis c is high, and to improve the health of ontarians living with hepatitis c. studies have shown that up to % of patients are able to complete their treatment with support compared to only % who do so with no support. algoma respiratory education program location: group health centre's willow avenue location [adec building] phone: janice belanger/suzanne macinnis: . . ; jennifer zufelt: . . fax: - - hours: : am to : pm weekdays (except holidays) eligibility: the algoma respiratory education program is a service provided by the group health centre to the people of the algoma district who have, or are at risk of developing, respiratory problems. description: the algoma respiratory education program is a service provided by the group health centre to the people of the algoma district who have, or are at risk of developing, respiratory problems. certified respiratory educators provide evidence-based screening, assessment, treatment, education and support in order to assist patients improve their quality of life. the certified respiratory educators assist clients who have asthma, chronic obstructive pulmonary disease (copd) or who need screening for lung disease. clients with asthma learn:  how to use puffers and how to take medication as prescribed  warning signs and symptoms of reactions to watch for and how to know allergic and non-allergic triggers  how to avoid exposure to triggers by changing your environment  the importance of not smoking and living in a smoke-free environment  managing asthma using an action plan and peak flow monitoring (meter that measures the amount of air that can be expelled from the lungs. clients with copd work with a team of health care professionals including a certified respiratory educator, kinesiologist, dietitian and social worker. this team provides education and support about:  causes of copd and what you can do about it  how copd affects your lungs  help to quit smoking  medications and how to take them  how to check how you are doing  recognizing if you have a chest infection and knowing the steps to take  exercise and conserving your energy  managing stress in your life  following a healthy diet  the staff of the respiratory program also provides screening for lung disease. anticoagulation clinic (ac clinic) phone: . . or . . . ext. (toll free in algoma district) fax: . . group health centre anticoagulation clinic : monday – friday : a.m. to : p.m. ( - - ) or - - - and ask for extension (toll-free in algoma district) lifelabs laboratory located in the cambrian mall: monday – friday : a.m. to : p.m. this location closes early (at : pm) the second thursday of every month. application: group health centre anticoagulation patients have to make an appointment with the lifelabs laboratory at the cambrian mall at least hours in advance by calling - - . eligibility: this program is for ghc enrollees* only. (*enrollee: those who have a primary care provider [family physician, paediatrician or nurse practitioner] based with the ghc or satellite location, and who receive most of your care here.) description: ghc’s anticoagulation clinic (ac) is staffed with registered nurses who have specialized training in the monitoring of blood work (inr).* *inr~international normalized ratio (inr) testing applies to patients who take warfarin. inr testing evaluates how long it takes blood to clot and is an important test to maximize the efficiency of the treatment. the anticoagulation nurses work closely under the direction of the referring physician following established protocols. ghc’s anticoagulation nurses:  adjust warfarin (coumadin) dose based on the results of inr blood testing  assess for minor and major bleeding episodes  meet with newly referred patients on anticoagulant therapy  provide education sessions regarding anticoagulant therapy throughout the year  provide education tools and literature as needed  assist patients with concerns with their anticoagulant therapy as needed  follow up with patients that miss lab visits  liaise with the referring health care provider as required  follow-up with pharmacy to provide warfarin refills on behalf of health care provider office  coordinate anticoagulant bridging for patients requiring time off of warfarin for surgery etc.  contact referring health care provider for any problems falling outside the protocol. cardiac rehab program location: willow avenue] phone: . . fax: . . hours: : am to : pm weekdays. closed on statutory holidays. application: self-referral, referral by any health care provider (see pdf referral form on right-hand side of this page) eligibility: open to residents of the city and district who have in the past year experienced a cardiac event (eg: heart attack, heart surgery, heart failure, angina and arrhythmia [including pacemaker]). description: the cardiac team helps patients to reduce their risk factors for vascular disease. they help to empower each patient to take an active role in self-managing their own health, while providing support for their emotional and physical well-being. your cardiac rehab team includes:  you  cardiologist  family physician/nurse practitioner  registered nurse  kinesiologist/physical therapist  registered dietitian  pharmacist and counsellor  algoma diabetes education & care program (adec)  community agencies/programs  family & friends how we can help you  cardiac rehab will help you make healthy lifestyle changes to better manage your heart health. cardiac rehab may include:  an interview to review your medical history and risk factors  a medication review  various measurements, eg: blood pressure  an ecg and/or stress test  blood tests  supervised exercise  nutritional counselling  education sessions  referral to other programs/agencies  counselling and support in your self-management efforts. congestive heart failure program (chf) location: willow avenue phone: . . fax: . . hours: : am to : pm weekdays. closed on statutory holidays. application: this program welcomes referrals of new patients from the sault area hospital, health provider offices, outside agencies such as north east community care access centre, and self- referrals. if a patient makes a self-referral and is not a ghc enrollee*, a fhw can see them for an initial chf education in office only, and not for home visits. description: under the umbrella of ghc’s family health worker program and the direction of dr. lee at the time, the chf initiative evolved into a program supporting education, disease self- management, healthy lifestyle changes and the bridging of care with other members of the health care team. through home and office visits, and phone support, the program nurses assist patients in understanding:  the signs and symptoms of chf,  the importance of medication compliance,  diet and fluid restrictions and  importance of exercise. geriatrics assessment program phone: . . fax: . . hours: : am to : pm weekdays. closed on statutory holidays. application: a referral from your primary care giver (family physician, nurse practitioner) is required. those referred to the program have multiple complex, medical, functional and psychosocial problems. eligibility: this program is open to the general public as long as they have a referral from their primary care provider (physician or nurse practitioner). description: our geriatric assessment program offers a multi- disciplinary team approach to geriatric care to enhance the abilities of patients by initiating a treatment plan that maximizes the elderly's independence and well-being. we strive to assist the elderly in maintaining their optimal level of physical, mental, emotional and social functioning. we also strive to increase the health knowledge and skills of the caregivers of the elderly and to reduce the incidence of accident-related injuries. criteria for referral to the geriatric assessment program are:  those patients who are elderly and frail;  whose independence is threatened; has complex problems (i.e. multiple diagnosis, multiple medications, etc.) failure to thrive; with nonspecific symptoms or problems;  social withdrawal; at risk for placement in long-term care facility; physical and psychiatric problems. our team of professionals include physicians with the algoma district medical group, a geriatric case manager and support staff with professionals from physical therapy, nutrition services, audiology, chiropody, internal medicine/surgery and family health nurses. they work together to provide comprehensive care, adjusted to the pace of the elderly. hiv, aids resource program location: st floor [front entrance], queen street east, sault ste. marie, on p a y phone: . . fax: . . hours: : am - noon and : - : pm. application: no referral needed. description: h.a.r.p. does not provide medical care. staff provide day-to-day education and support for local individuals infected, affected or at risk by hiv/aids and related issues. h.a.r.p. is funded provincially by the ministry of health and long- term care’s aids bureau and federally by the public health agency of canada. education and support includes: presentations, workshops, information sessions and conferences on hiv, aids, safer sex, and other issues. outreach services are provided with the help of community partners by developing strategies on harm reduction for safer sex and intravenous drug users. a resource centre featuring pamphlets, posters, videos, books and fact sheets is also available. irp physiotherapy location: mcnabb street (based in family ymca) phone: - - fax: . . hours: : am to noon and : to : pm application: referrals are usually seen within one to five days and self-referrals are also accepted. eligibility: open to the general public. description: irp physiotherapy is a comprehensive exercise-based physiotherapy program aimed at getting injured workers back to work and rehabilitating clients back to normal activities and work following a motor vehicle accident. we also specialize in the treatment of orthopaedic and sports injuries. clients with private insurance are accepted. treatments may involve traditional physical therapy including:  manual therapy  sports-specific training  aquatherapy  work hardening and functional retraining  preventative education  home exercise programs  prescription of braces/assistive devices  use of therapeutic modalities occupational health services phone: . . hours: flexible hours available. eligibility: open to the general public. description: ohs is a confidential service that promotes the highest degree of physical, mental, and social well being for your employees using a proactive team of health professionals. it offers tools and resources to improve and maintain a healthy lifestyle. audiology phone: . . fax: . . hours: : am to : pm weekdays (excluding statutory holidays) application: appointments are by self-referral. eligibility: open to the general public. description: a certified audiologist provides hearing health care solutions through diagnostic evaluations, hearing prevention/protection education and individual fittings of a wide selection of the latest digital hearing aids and selective listening devices. their goal is to provide early identification of hearing loss in order to improve the quality of life through better hearing. we use of the latest state-of-the-art equipment and technology to identify current hearing loss levels with appropriate referrals, education and rehabilitation provided. we strive to provide realistic expectations and education in developing suitable hearing solutions for individual lifestyles and budgets. services and tests offered:  complete audiological evaluations for all age groups  claims for wsib, veterans affairs etc.  pre-employment/work related audiograms  central auditory processing assessments (age and over) *fee attached  hearing aid evaluations - all manufacturers (trial period offered)  hearing aid fittings and follow-up  hearing aid repairs, cleaning and troubleshooting  tinnitus masking devices  ear mold fittings, custom noise and/or swim plugs available  counselling/support on care and use of hearing aids (lip reading and rehabilitation classes)  assistive listening device selections and sales (telephone amplifiers, infrared for televisions, etc.)  batteries and hearing aid accessories available chiropody phone: . . fax: . . hours: by appointment : am to pm weekdays (excluding statutory holidays) application: appointments are by referral from your health care provider or by self-referral. eligibility: open to the general public. description: our registered chiropodists provide the examination, treatment, and education regarding the prevention of disease and conditions of your feet. foot care offered through this program includes:  nail care including ingrown nails, fungal nails, and nail surgery  callus and corn treatments  biomechanical assessments, custom-made orthotics, and shoe adjustments  foot care and footwear education  diabetic foot care, including ulcer management  wart treatments (including cryotherapy using liquid nitrogen). diagnostic imaging phone: . . fax: . . hours: am to pm weekdays. closed on statutory holidays. application: appointments are by provider referrals. eligibility: open to the general public. description: approximately , procedures are performed annually in diagnostic imaging. there are staff members and two radiologists who perform:  x-ray, including routine radiography  barium studies  ultrasound  bone mineral density tests  echocardiography, and  mammography (see algoma breast health program/ontario breast health program). family health nurses phone: - - fax: . . hours: : am to : pm, weekdays. eligibility: this service is for ghc enrollees* only. (*enrollee: those who have a primary care provider [family physician, paediatrician or nurse practitioner] based with the ghc or satellite location, and who receive most of your care here.) description: our family health nurse program is a supportive nursing service addressing the physical, social, emotional and spiritual needs of group health centre enrollees and their families. the scope of care includes all facets of chronic disease management within a multidisciplinary approach. key components of care include:  geriatrics  palliative support  ghc's congestive heart failure program. injection clinic phone: . . fax: . . hours: tuesday and thursdays only: : am to : pm and : to : pm application: accessible by referral from your primary health care provider. eligibility: this service is for ghc enrollees* only. (*enrollee: those who have a primary care provider [family physician, paediatrician or nurse practitioner] based with the ghc or satellite location, and who receive most of your care here.) description: group health centre's injection clinic provides injections for enrollees as ordered by their primary provider (family physician or nurse practitioner). types of injections vary and may include:  immunizations  allergy injections  monthly b injections  birth control injections  hepatitis b  and more nutrition services location: willow avenue phone: . . fax: . . hours: tuesday to friday am to pm weekdays. closed on statutory holidays. application: appointments are by referral from your primary health care provider, or by a registered nurse or dietitian. eligibility: this service is for ghc enrollees* only. (*enrollee: those who have a primary care provider [family physician, paediatrician or nurse practitioner] based with the ghc or satellite location, and who receive most of your care here.) description: our registered dietitian provides care and services to patients of all ages to help them meet their nutritional needs, improve their well-being and to prevent disease. individual and group sessions are available for the following:  healthy eating  dyslipidemia (cholesterol class is offered twice per month)  pregnancy (poor nutrition, slow/fast weight gain)  gi (celiac, crohn's, colitis, ibs, diverticulitis)  paediatrics (food allergies), ftt, gi, fe deficiency anemia, bpd, cf  cancer (cachexia/malnutrition)  eating disorders (anorexia/ bulimia)  hypoglycemia  vip (vascular intervention program phototherapy phone: . . fax: . . hours: monday, wednesdays and fridays, - noon and - pm (except on statutory holidays) application: appointments are by referral from a dermatologist/dermatopathology. description: psoriasis is a non-contagious skin disease that affects millions of north americans. it causes the development of various sizes of red patches covered with dry, silvery scales. those suffering with this illness experience inflammation during different times and presently there is no known cure. our phototherapy service offers an ultraviolet (uv) booth; uvb puva booth; and the puva hand and foot unit -- forms of artificial light used to treat psoriasis. physical therapy phone: . . fax: . . hours: by appointment only. application: physical therapy is available by referral from your health care provider or by self-referral. eligibility: open to the general public. description: our physical therapy department is one of the largest in northern ontario! physical therapists perform detailed musculoskeletal assessments and determine appropriate treatment for a variety of conditions, including orthopaedic (muscle, bone joint), neurological (stroke, m.s., etc.), geriatric, and cardiorespiratory. services include:  post-surgical rehabilitation,  sports injury rehabilitation,  acupuncture,  vestibular rehabilitation (vertigo),  falls prevention classes,  osteoporosis education,  preventative education,  assistive devices assessments,  prescription of braces/assistive devices,  custom exercise programs,  pelvic therapy for urinary incontinence, dyspareunia (pain during sexual intercourse) and pelvic pain. primary care thirty-five family practitioners with the algoma district medical group and nine nurse practitioners work collaboratively to provide primary care at the group health centre for over , patients. nurse practitioners currently work in family practice, obstetrics and gynaecology, our same day appointment clinic, and in women's health. our primary care practitioners work collaboratively with specialists and a comprehensive team of allied health professionals including optometrists, chiropodists, physical therapists and audiologists. same day appointment clinic phone: . . fax: . . hours: am to pm, weekdays by appointment only. closed on statutory holidays. eligibility: available to patients of the group health centre only. description: our 'same day appointment clinic' supplements services provided by family physicians of the algoma district. medical group and ghc nurse practitioners. patients are encouraged to first seek the services of your health provider at the group health centre. the same day appointment clinic is intended to treat only urgent, non life-threatening medical problems. before making an appointment with the same day appointment clinic, please read the following:  if you are experiencing chest pain, go directly to the sault area hospital emergency department  if you've experienced a head injury, seizure, or severe pain in your chest or abdomen, go directly to the sault area hospital  your primary health care provider should complete all forms including wsib, unless it's a new injury and your provider is absent  your health care provider should order any required tranquilizers, narcotic and psychotropic drugs or prescription refills  you should receive your lab results from your health care provider or a chosen substitute  a physical should only be obtained from your health care provider  your health care provider, except in emergencies, should arrange consultations  if you require an allergy shot, make arrangements with your health care provider who will make an appointment with our injection clinic  if you're experiencing long-standing symptoms, see your health care provider - unless new symptoms arise. surgery phone: . . fax: . . hours: front reception - : am to pm, weekdays, closed on statutory holidays. o.r. bookings in conjunction with the sault area hospital - am to pm, weekdays, closed on statutory holidays. application: appointments are by referral from your primary care physician. description: our professional team includes an orthopaedic surgeon as well as three general surgeons, two who specialize in vascular and thoracic surgery, and a visiting neurosurgeon. they provide surgical consultation and follow-up care. a variety of procedures are conducted in this department using endoscopies for procedures not requiring general anaesthesia including colonoscopies, gastroscopies and bronchoscopies and other minor procedures. registered nurses provide the post-operative dressing, procedures and monitoring. (group health centre- programs & services, ) primary care/allied health/specialized services organization (primary care/allied health): algoma nurse practitioner-led clinic main site address: phone: ( ) - northern ave fax: ( ) - sault ste. marie, on email: p a l website: http://www.algomanplc.ca hours: contact office. application: the algoma nurse practitioner-led clinic is accepting patient registrations- online or in person. eligibility: contact office. languages: english. service description nurse practitioner-led clinic the algoma nurse practitioner-led clinic provides primary care to residents of sault ste. marie and surrounding area who are currently unattached to a primary care provider (physician/nurse practitioner). the clinic provides comprehensive care to its patients, including health promotion, and chronic illness management. patients who are registered with the clinic will be registered to a nurse practitioner and will have access to the clinic's multidisciplinary team which includes a registered nurse, registered practical nurses, social worker, pharmacist and administrative support staff. (algoma nurse practitioner-led clinic, ) primary care/allied health/specialized services organization (primary care/allied health): sault care walk in clinic main site address: phone: ( ) - unit - great northern road fax: sault ste. marie, on email: p b y website: http://saultcare.ca/default.aspx hours: pm to pm (mon-thu). closed friday to sunday application: contact office. eligibility: contact office. languages: english. service description walk in clinic the saultcare medical clinic's multi-disciplinary health team is dedicated to providing quality primary care and walk-in services for the people of sault ste. marie and surrounding area. services:  unscheduled visits: the walk-in clinic will be available to everyone for non-emergency minor care. the visits will be based on first-come first-served basis. in order to minimize wait time; we would encourage our patients to present with one or maximum two issues per visit. we would be happy to deal with your other concerns during your future visits.  prescription renewal clinic: we do not refill sedatives and narcotics; patients have to see their regular physicians who normally prescribe their sedative and narcotics for chronic use. (saultcare, ) primary care/allied health/specialized services organization (primary care/allied health): superior family health team main site address: phone: ( ) - unit - great northern road fax: sault ste. marie, on email: p b y website: http://www.superiorfht.ca/index.php hours: contact office/listed below. application: contact office/listed below. eligibility: contact office/ listed below. languages: english. service description family health team a family health team is an approach to primary health care that brings together different health care providers to co-ordinate the highest possible quality of care for you - the patient. designed to give doctors support from other complementary professionals, most family health teams will consist of doctors, nurses, nurse practitioners and other health care professionals who work collaboratively, each utilizing their experience and skills so that you receive the very best care, when you need it, as close to home as possible. services:  smoking cessation  mental health  osteoarthritis education series after hours clinic eligibility: the after-hours clinic should be used when you are unable to get a same day appointment and need medical attention. it is available only to patients registered with one of the family health team physicians. hours: monday to thursday from pm to pm. saturday from am to am the superior family health team’s after hours clinic offers convenient access to healthcare services for minor illnesses and injuries outside of regular work hours. we offer this service to provide extended care hours and help reduce the amount of visits to the local emergency department for non-urgent issues. (superior family health team, ) primary care/allied health/specialized services organization (primary care/allied health): baawaating family health team main site address: phone: - - gran st fax: - - sault ste marie, on email: p a k website: https://sites.google.com/site/baawaatingfht/ hours: contact office. application: we are still accepting new patients into our practice. anyone who would like to be a new patient will need to register with health care connect. eligibility: contact office. languages: english. service description family health team the baawaating family health team offers a wide range of health care services to our patients. the list below outlines some of the most popular services.  preventative medical care: by using the best available evidence, we provide the information and resources for patients to maintain good health and prevent disease.  well-baby and well-child care (developmental assessments).  the annual physicals.  complete physical examinations are performed when required for the diagnosis of complex symptoms.  immunizations: all childhood vaccinations and adult boosters, annual flu shots, pneumonia shots (when indicated by age or medical condition), hepatitis a and b (on prescription), tb skin testing, and tetanus diptheria .  supportive and educational counselling or referral to the appropriate resources are provided following an assessment of the issues  allergy shots are provided during regular office hours  treatment of warts, minor skin lesions and "sun-damaged" spots  provides otn (telemedicine) appointments (baawaating family health team, ) primary care/allied health/specialized services organization (primary care/allied health): sault area hospital walk-in clinic (fast track) site address: phone: ) - great northern road fax: sault ste marie, on email: p b a website: hours: : a.m. to : p.m. daily. application: the triage nurse decides if you will be seen in the core ed or sent to the fast track area. eligibility: upon your arrival in the ed, you will be welcomed by a triage nurse who is specially trained in emergency care. based on your history of illness and following a standardized evaluation process used by hospitals across canada, the nurse will determine the severity of your condition and prioritize your case accordingly. languages: english, other. service description walk-in clinic fast track area (formerly referred to as the walk-in clinic) provides care for patients with less serious illnesses or injuries. (sault area hosptial- programs & services, ) geriatric specialist services primary care/allied health/specialized services organization (geriatric specialist services): north east specialized geriatric services main site address: phone: - - notre dame ave. fax: - - sudbury, on email: nesgs@greatersudbury.ca p a t website: http://www.greatersudbury.ca/?linkservid= c - a b-bfcf- ed f ae c b toll free: - - - hours: contact office. application: complete the north east specialized geriatric services referral form, physicians, signature required. eligibility: seniors with cognitive challenges; multiple or complex medical problems; depression with additional medical problems; falls or fear of falling; unexplained weight loss; polypharmacy; functional decline; incontinence; impaired mobility; increased used in healthcare (i.e. multiple er visits, hospitalization, increased home care needs); parkinson’s disease; unaddressed safety concerns; caregiver stress/burden. languages: english. service description specialized geriatric services a specialized team of health care providers who provide multidisciplinary clinical assessment and treatment services for older people including:  geriatrician  registered nurses  physiotherapist  occupational therapist  social worker  geriatric education resource coordinator services:  telemedicine consultation  regional outreach and education (north east specialized geriatric services brochure, n.d.) http://www.greatersudbury.ca/?linkservid primary care/allied health/specialized services organization (geriatric specialist services): group health centre- geriatric assessment clinic main site address: phone: . . mcnabb street fax: . . sault , on email: p a t website: http://www.ghc.on.ca/about/content.html?sid= hours: contact office. application: a referral from your primary care giver (family physician, nurse practitioner) is required. those referred to the program have multiple complex, medical, functional and psychosocial problems. eligibility: those patients who are elderly and frail; whose independence is threatened; has complex problems (i.e. multiple diagnosis, multiple medications, etc.) failure to thrive; with nonspecific symptoms or problems; social withdrawal; at risk for placement in long-term care facility; physical and psychiatric problems. languages: english. service description geriatric assessment program our geriatric assessment program offers a multi-disciplinary team approach to geriatric care to enhance the abilities of patients by initiating a treatment plan that maximizes the elderly's independence and well-being. we strive to assist the elderly in maintaining their optimal level of physical, mental, emotional and social functioning. we also strive to increase the health knowledge and skills of the caregivers of the elderly and to reduce the incidence of accident-related injuries. our team of professionals include physicians with the algoma district medical group, a geriatric case manager and support staff with professionals from physical therapy, nutrition services, audiology, chiropody, internal medicine/surgery and family health nurses. they work together to provide comprehensive care, adjusted to the pace of the elderly. patients with the geriatric assessment program are also referred to other community health programs including: ~ von ~ day away program ~ seniors mental health ~ lifeline ~ algoma community care access centre ~ alzheimer society (group health centre- programs & services, ) public health primary care/allied health/specialized services organization (public health): algoma public health site address: phone: - - willow ave fax: - - sault ste marie, on email: website: www.algomapublic health.com toll free: - - - office hours: mon-fri : am- : pm application: appointment required for most services eligibility: see description for services listed below. languages: english. service description community alcohol/ drug assessment program eligibility: years and older seeing assistance with substance abuse programs. community drug/alcohol assessment program (cadap) provides the following services:  screening  assessments  counselling and referrals  methadone maintenance  harm reduction distribution  ontario remedial measures (back on track)  addiction supportive housing  anger solutions  ontario workers addiction services initiative community mental health eligibility: and over who experience severe and persistent mental illness community mental health support services assists individuals with severe and persistent mental illness to achieve their highest level of functioning in the community. sexual health services  sti/hiv counselling and testing  access to sti treatment  support for hiv positive persons and families  sexual health information  community education  nurse practitioner services infection control  investigation and management of communicable diseases and/or outbreaks  management of infectious diseases  education to health care professionals and the community at large  surveillance of illnesses (e.g. influenza, west nile virus)  prevention, testing, management and treatment of tb  travel clinics  consultation for management of communicable disease n institutions (hospitals, long-term care facilities) (algoma public health- programs and services brochure, n.d.) sector : system navigation/planning map system navigation/planning system navigation north east community care access centre system planning north east local health integration network sector : system navigation system navigation/planning inventory organization (system navigation): north east community care access centre site address: phone: -ccac willow ave fax: - - sault ste marie, on email: janet.skuce@ne.ccac-ont.ca website: www.ne.ccac-ont.ca toll free: - - - teletype: - - - office hours: mon-fri : am- : pm telephone line hours: mon-sun am- pm application: none. eligibility: none. languages: english; french. service description information & referral  we can provide information and referral services to assist you in finding and contacting community support services that will help you.  information is available by calling the north east ccac ( - ccac) bout services such as housing resources, mobile meal services, private home care, drip-in centres, day programs, culturally-specific services, cleaning services and many other community supports.  information is available about local services and services provided elsewhere in the providence. placement services- short- stay/long-term placement at long-term care homes for applicants over years of age, placement services:  collects all information needed to determine your eligibility and admission to a long term care home (ltch);  provides information and support to you throughout the ltch process;  provides information about all lochs in your area;  assists you with a short-stay placement at a ltch if your caregiver requires respite;  helps you to find a short-stay convalescent care in a ltch in you need a place to recover;  connects families to support services in the community; and  works with other ccacs in the providence if you want to relocate to another community. note: if vacancies are not available you ill be waitlisted and other options discussed. (north east community care access centre-client care information booklet, n.d.) system planning system navigation/planning inventory organization (system planning): north east local health integration network site address: phone: ( ) - mcnabb street, rd floor fax: ( ) - sault ste marie, on email: website: http://www.nelhin.on.ca/ toll free: - - - office hours: mon-fri : am- : pm application: none. eligibility: none. languages: english; french. service description system planning who we are: the north east local health integration network (north east lhin) is one the largest of lhins in ontario, responsible for planning, integrating and funding health care services for more than , people across an estimated , square kilometers. from offices in north bay, sault ste. marie, sudbury and timmins, we are a provincial crown corporation that ensures the local health care system works when people need it. the north east lhin brings of our region’s health care partners together – hospitals, community support services, mental health and addictions, community health centres, long-term care homes, and the community care access centre. what we do: we fund front-line health care work to ensure northerners, get the right care, at the right time, in the right place, at the right cost. we integrate, plan and fund – health service providers ( hospitals) our focus is on patient-centered care right across the health care system. why we’re doing it: to improve each northeastern ontarian’s health care experience. for the first time ever, the north east lhin: measures the delivery of health care services sets targets based on these measures holds organizations accountable for achieving targets publicly reports on performance results achieves targets that improve the lives of patients engages with fellow northerners on building a patient focused health care system for northerners, by northerners our region: , km , people; % urban, % rural vibrant and distinct both culturally and linguistically, our region has the highest number of francophones (at % of the population) in the province and a significant number of aboriginal and first nation communities ( . %). our budget: $ . billion in front- line care decision making framework the ne lhin staff and board members follow a decision making framework when evaluating proposals for new programs and initiatives, changes to existing programs, or integration proposals. to view the framework, click here. mission: to advance the integration of health care services across northeastern ontario by engaging our local communities. vision: quality health care, when you need it. (north east local health integration network- about us, ) appendix f: senior’s health knowledge network- communities of practice communities of practice a community of practice (cop) is a group of practitioners, caregivers, policymakers, researchers, healthcare administrators, educators and community leaders who come together to exchange information on a topic related to seniors health. “coming together” can mean many things, such as designing and implementing interactive educational programs, webinar series or knowledge events. these individuals have not only made a commitment to be available to offer support and learn from one another but also to develop new knowledge. the network supports cop members by providing: . access to an events coordinator who will partner with the cop lead to assist with scheduling, events promotions and booking meeting space . access to an information specialist who will help identify and access information related to the cop, and deliver education services, if eligible . access to a knowledge broker who can help capture and facilitate knowledge exchange and information . access to e-meeting software . access to toll-free teleconference line . interactive engagement activities . support for research activity and dissemination of research findings the network's communities of practice: . aging and developmental disabilities . communicative access & aphasia . diabetes . falls prevention . medication safety . mental health, addictions and behavioural issues (a joint ake/shkn cop) *link coming soon* . nutrition . oral health . wound care please note: to join any of our communities, first you must become a member. when you log in, there will be a link on the top of each community page that says 'join this community.' our cops vary from year to year. it is a competitive process and some cops reach a natural end of life cycle. others become a coi until they transition back to being a cop. we archive their content on the site. for more information please use the following link: http://www.shrtn.on.ca/community/communities-practice source: seniors health knowledge network website- communities of practice, . one health in hospitals: how understanding the dynamics of people, animals, and the hospital built-environment can be used to better inform interventions for antimicrobial-resistant gram-positive infections review open access one health in hospitals: how understanding the dynamics of people, animals, and the hospital built-environment can be used to better inform interventions for antimicrobial-resistant gram-positive infections kathryn r. dalton * , clare rock , karen c. carroll and meghan f. davis abstract despite improvements in hospital infection prevention and control, healthcare associated infections (hais) remain a challenge with significant patient morbidity, mortality, and cost for the healthcare system. in this review, we use a one health framework (human, animal, and environmental health) to explain the epidemiology, demonstrate key knowledge gaps in infection prevention policy, and explore improvements to control gram-positive pathogens in the healthcare environment. we discuss patient and healthcare worker interactions with the hospital environment that can lead to transmission of the most common gram-positive hospital pathogens – methicillin-resistant staphylococcus aureus, clostridioides (clostridium) difficile, and vancomycin-resistant enterococcus – and detail interventions that target these two one health domains. we discuss the role of animals in the healthcare settings, knowledge gaps regarding their role in pathogen transmission, and the absence of infection risk mitigation strategies targeting animals. we advocate for novel infection prevention and control programs, founded on the pillars of one health, to reduce gram-positive hospital-associated pathogen transmission. keywords: infection prevention, infection control, hospital-associated infections, hospital environment, hai interventions, one health introduction one health approaches are based on the belief that we cannot truly understand human, animal, and environ- mental health by addressing each in isolation. in order to address complex public health challenges, we must understand the interconnectedness of these domains with a holistic methodology. similar to other systems- thinking models, one health focuses equally or more on the relationships between the factors in the system, rather than on the individual-level factors themselves. the one health paradigm has origins in the recogni- tion that diseases often emerge from interactions of humans and animals, termed initially as “one medicine”, and incorporated preventative and public health. it has since grown to include environmental science and eco- health to encompass the shared environment role [ ]. the combined assessment of health risks across the © the author(s). open access this article is licensed under a creative commons attribution . international license, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the creative commons licence, and indicate if changes were made. the images or other third party material in this article are included in the article's creative commons licence, unless indicated otherwise in a credit line to the material. if material is not included in the article's creative commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. to view a copy of this licence, visit http://creativecommons.org/licenses/by/ . /. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated in a credit line to the data. * correspondence: kdalton @jhu.edu department of environmental health and engineering, johns hopkins bloomberg school of public health, n wolfe st, w g jhsph ehe, baltimore, md , usa full list of author information is available at the end of the article dalton et al. antimicrobial resistance and infection control ( ) : https://doi.org/ . /s - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf http://orcid.org/ - - - http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / mailto:kdalton @jhu.edu three domains; humans, animals, and the environment; involves design and implementation of intervention strategies that address all three sectors with a goal to produce assimilated knowledge. the one health concept has been successfully applied to fields such as emerging zoonotic disease outbreak investigation and biosecurity risk across humans and animals [ , ]. but how does one health impact our healthcare sys- tem? hospitals serve as an incubator that incorporates dynamic microbial inputs from the community from both people and animals, as illustrated in fig. . anti- microbial use exerts selective pressure on these incom- ing microbial ecosystems, shifting to a higher prevalence of resistant organisms. microbial ecosystems are defined for this paper as the composition, and the networks, of the entire microorganism population within a single niche or site. individuals in the hospital (both patients and employees) may become colonized with hospital- associated multidrug-resistant organisms (mdro) and then are discharged back to the community, creating a cyclic feedback loop [ – ]. finally, mdro acquisition and infection is more likely diagnosed in the hospital setting, resulting in the hospital serving as both a sur- veillance point and multiplier for resistant organisms and infections, which underscores the need to describe community and hospital-based risk factors that influence the hospital environment. the application of one health principles to hospital infection prevention and control has not been described previously. in the clinical setting, one health can pro- vide practical ways to incorporate environmental and animal contact considerations into patient care. while the concept has been endorsed by major medical and public health organizations, studies of physicians reveal limited awareness to the environmental health aspects of medical problems in the patient care settings, as well as low awareness levels about prevention or treatment of zoonotic diseases from animals [ , ]. therefore, the purpose of this review is to use a one health lens to de- scribe the relationship between the hospital environment and patient care specifically for gram-positive hospital- associated pathogens, and to identify how animals fit into this relationship (fig. ). a broad literature search was conducted to identify information relevant to the scope of this work, see fig. . articles published prior to june were considered for review. hospital-associated gram-positive pathogens healthcare-associated infections (hai) are an increas- ingly prevalent threat in the unites states healthcare system. the centers for disease control and preven- tion’s national healthcare surveillance network (cdc- nhsn), a us surveillance system, estimates that about one in hospitalized patients acquires an hai [ ]. this review focuses on gram-positive bacterial pathogens, a significant cause of hais, which may survive longer on dry surfaces than gram-negative bacteria [ , ]. methicillin-resistant staphylococcus aureus (mrsa) was the first pathogen where spread through the hospital environment was documented, though targeted hospital efforts are contributing to its decline in the past decade [ , ]. it is relevant to one health, as some mrsa strains and other multidrug-resistant staphylococci are associated with animals, livestock in particular [ , ]. the second most common hospital associated gram- positive pathogen is clostridioides difficile (genus recently reclassified from clostridium [ ]). rates of resistance and transmission depends on strain, with higher rates seen in the pcr ribotype and epidemic strains, and docu- mented resistance to quinolones, clindamycin, rifamycins, fig. interaction of humans, animals, hospital environment, and the community in hospital-associated pathogen transmission dalton et al. antimicrobial resistance and infection control ( ) : page of erythromycin, chloramphenicol, tetracycline and even imi- penem [ ]. it is included in this review because it is the most common hospital-acquired infection pathogen (~ , infections annually with up to , deaths in the us) and antibiotic prescribing for other infections (such as mrsa) can be a risk factor for c. difficile infection, con- versely treatment with the recommended vancomycin protocol has been shown to lead to our third gram- positive pathogen of concern [ ]. the third gram-positive pathogen we cover in this re- view, of increasing concern as a hospital-associated pathogen, is vancomycin-resistant enterococcus (vre). while not credited with the same degree of pathogen- icity as mrsa or c. difficile, vre causes infections in vulnerable patients, including outbreaks that are difficult to control due to its resistance to routine cleaning. all three important gram-positive pathogens are able to survive in the environment for days to months and have low infectious doses—as low as spores (c. difficile) or cfus (mrsa)— where inadequate environmental ap- proaches can pose an ongoing risk of transmission to hospital patients [ ]. the hospital environment the hospital built-environment critical to a one health approach is the role of the en- vironment, including the unique characteristics of the built environment. the built environment is defined as the infrastructure created by people for spaces where they live and work, with consideration for how physical properties of these buildings influence health [ ]. the hospital environment can facilitate transmission of path- ogens responsible for hais. the inanimate environment can be a mdro reservoir [ , ], with environmental contamination responsible for approximately – % of patient mdro acquisitions [ ]. table summarizes select key studies on the role of the hospital environment in mdro and other pathogen transmission. contamination of high-touch surfaces with mdros such as methicillin-resistant staphylococcus aur- eus [ , ], vancomycin-resistant enterococcus [ , ], and clostridioides difficile [ , ] for prolonged time periods has been well documented, and thus can serve as a potential reservoir for onward infections to patients and healthcare workers. multiple studies have shown that there is higher hai risk for patients who are in rooms that were previously occupied by an hai-positive patient, even after routine cleaning and disinfection [ – ]. aspects of the hospital’s built-environment and design, including different surface materials, can influence micro- bial transmission. plipat et al. showed that mrsa may more easily and in higher burden contaminate porous sur- faces, but when those contaminated porous surfaces are touched by patients or healthcare workers they are less likely to transfer mrsa compared with non-porous sur- faces [ ]. another example of hospital design is private versus open shared rooms. a review of over million inpatient records from us hospitals found a % increase in private rooms was associated with an . % overall decrease in hospital-associated catheter infections [ , ]. other hospital level risk factors for patient hai acquisition include larger hospital size and higher patient density and clustering [ – ]. hospitals that are highly connected to one another through a shared health-care system or through a referral system have more patient mrsa bacteremia incidence rates (partial correlation co- efficient r = . ( . to . )) [ , ]. another key hos- pital design consideration is hospital-acquired pathogen strains may enter into the community through improperly treated hospital wastewater effluent, including mrsa and vre [ ], although discussion of this topic is beyond the scope of this paper. hospital fomites inanimate objects within the hospital can frequently be- come contaminated with pathogens and serve as sources for contamination and potential colonization for individ- uals who come in contact with them. these important fomites can travel between hospital rooms and patients, serving as a mechanical vector in pathogen spread. nearly any item in contact with skin can serve as a fo- mite in pathogen transmission, from wearables like white coats and ties to pens, medical devices, and mobile telephones. hospital objects have been extensively sam- pled for pathogen carriage and colonization, with preva- lence rates as high as % for stethoscopes, % for neckties, and % for rings [ ]. concise reviews of the major reservoirs have been published previously by the centers for disease control and prevention’s “guide- lines for environmental infection control in health- fig. literature search methodology dalton et al. antimicrobial resistance and infection control ( ) : page of care facilities” [ ] and in the international society for infectious disease’s “a guide to infection control in the hospital” [ ]. other possible dissemination routes for pathogens, including. s. aureus and c. difficile, is air- borne dispersion [ – ], promoting spread among the hospital environment and individuals. the hospital microbial ecosystem however, human exposure to resistant pathogens occurs in the context of microbial ecosystems, and the hospital built environment can be a source for a number of other microorganisms that are less often pathogenic but can serve as potential reservoirs of resistant genes. a hospital microbiome can harbor a diverse set of antimicrobial re- sistance genes that are extremely relevant to human health, and these ultimately could be reflected in hai rates. for example, there is evidence for frequent horizontal transfer of the mobile genetic element staphylococcal cassette chromosome mec (sccmec) gene, which encodes for methicillin resistance, between s. aureus and coagulase- negative staphylococcus [ ]. coagulase-negative staphylo- cocci are not traditionally regarded as pathogenic, but share the same ecological niche in the human anterior nares, leading to the opportunity for horizontal gene table key studies that examine the role of environment in patient infectious disease outcomes relation organism comments reference increased acquisition env - > patient mrsa outbreak of mrsa in hospital that lasted years was found in hospital dust with the same genotype. [ ] env - > patient not specific patients assigned to shared bay rooms had a % greater relative risk of a central line infection (p = . ), compared with patients assigned to private rooms. at the hospital level, a % increase in private rooms was associated with an . % decrease in central line infections (p < . ), regardless of individual patients’ room assignment. [ ] env - > patient mrsa three of patients who acquired mrsa while in the intensive care unit acquired mrsa from the environment, strains from the patients and their immediate environment were indistinguishable [ ] env- > hcw vre contact with contaminated surfaces in the rooms of colonized patients results in transfer of vre to gloved hands, despite cleaning with disinfectants [ ] env - > hcw c. difficile increasing levels of environmental contamination was positively associated with increasing amounts of c. difficile on the hands of healthcare workers, particularly for environmental sites that patients touch [ ] patient - > env c. difficile surfaces in rooms exposed to a c. difficile patient had significantly increased odds of being contaminated with c. difficile, compared to surfaces in unexposed patient rooms [ ] patient - > hcw mrsa two-thirds of staff enter a room containing an mrsa patient will acquire the patient’s strain on gloved hands or apron, even without touching patient directly ( %) [ ] patient - > patient mrsa, vre admission to a room previously occupied by an mrsa-positive patient or a vre-positive patient significantly increased the odds of acquisition for mrsa and vre. [ ] patient - > patient c. difficile prior room occupant with cdi was a positive risk factor for new patient cdi acquisition, hazard ratio . p = . [ ] patient - > patient several (mrsa, c. difficile, vre) pooled acquisition odds ratio of . ( % confidence interval (ci), . e . ) for several bacteria from prior occupants, gram positive . ( % ci: . – . ) [ ] patient - > env - > hcw mrsa in the colonized patient’s room, hcw exposure occurred more predominantly through the indirect (patient to surfaces to hcw) mode compared to the direct (patient to hcw) mode. [ ] cleaning/removal reduces human acquisition env - > patient mrsa enhanced cleaning during an outbreak decreased the number of new affected patients, stopped outbreak, and saved an estimated £ , . [ ] env - > patient general lower infection rates associated with routine disinfection of surfaces (mainly floors) [ ] env - > patient c. difficile daily disinfectant high touch surfaces and dedicated cleaning staff reduced cdi positive cultures by % [ ] env - > patient c. difficile hydrogen peroxide vapor decontamination reduced cdi rate by % [ ] env - > patient vre hydrogen peroxide vapor reduced vre by % [ ] env - > patient mrsa reduction in acquired mrsa infections with enhanced targeted cleaning compared to routine cleaning, despite higher mrsa patient-days and bed occupancy rates during enhanced cleaning periods (p = . : % ci . , . %). genotyping identified indistinguishable strains from both hand-touch sites and patients [ ] env - > hcw vre decreasing vre contamination of environmental surfaces decreases hand colonization of vre and vre acquisition rates [ ] mrsa methicillin-resistant staphylococcus aureus, cdi c. difficile infection, vre vancomycin-resistant enterococcus, env hospital environment, hcw healthcare worker dalton et al. antimicrobial resistance and infection control ( ) : page of transfer [ ]. understanding other potential sources of antimicrobial-resistant genes is fundamentally important in combating and understanding mdro epidemiology. bac- terial diversity also varies among different hospital areas – it has been shown that the halls, living rooms, patient rooms, and rest rooms exhibit more diverse bacterial com- positions than that of the isolated icu [ ]. different icu management practices, including more rigorous sanitation protocols, could exert selective pressure and foster survival of microorganisms that express genes for resistance to common disinfectants and antimicrobial agents [ ]. within the hospital built environment, humans are a predominant source of colonizing microbes. researchers found that bacteria in a patient room resembled the skin microbiota of the patient occupying the room and be- came more similar throughout the patient’s stay [ ]. additionally, they reported that patients acquire micro- organisms that were present in the room before patient admission, indicating transfer both ways between pa- tients and the hospital environment of all microorgan- isms—not just pathogens [ ]. this means that patients and hospital workers likely alter the hospital’s microbial composition in the specific areas they occupy, resulting in unique micro-environments within the larger hospital. while this currently is an understudied research area, a better understanding of how microorganisms colonize, persist, and change in the hospital environment has the potential to elucidate major infection sources beyond attempts to focus on specific pathogens, and provide key insights into human health. human factors patient characteristics human factors are critical when assessing one health in hospitals in the context of hai transmission. according to some estimates, – % of patients will develop an in- fection while in the hospital [ ]. multiple studies have shown that around % of patients who enter hospitals are asymptomatically colonized with at least one type of mdro, emphasizing the substantial influx of mdro from community settings into the hospital [ ]. a math- ematical model of hospital pathogen spread showed that increasing the patient mdro prevalence at admission to %, or doubling the average length of hospital stay, almost tripled the predicted overall prevalence of mdro-colonized patients within the hospital [ ]. established factors associated with increased risk of nosocomial infection include prolonged antimicrobial therapy, comorbidity with chronic health conditions, compromised immune function, and close proximity to other patients infected or colonized with an mdro [ ]. higher patient density, from both higher influx or longer length of patient stay, can increase direct contact rates between patients which could increase the probability of direct transmission of mdro. in addition, because patients shed bacteria into their local environments, patient density can also increase contamination of the environment and environmental fomites, thereby increas- ing the indirect transmission of mdro [ ]. an increasing reservoir of mdro through increases in patient admis- sion or length of stay is important to address when asses- sing the efficacy of infection control interventions. if the reservoir of mdro increases, then the benefits of prevent- ive strategies may be minimized. studies have shown higher prevalence of hais in hospitals within more densely-packed urban centers, hospitals in lower socioeco- nomic neighborhoods, and hospitals in communities where the majority of residents are racial and ethnic mi- norities, independent of hospital risk factors [ – ]. patients are often prescribed antibiotics as part of their hospital care, occasionally untargeted and unnecessarily, as published reports have estimated that – % of anti- biotic prescriptions are inappropriate [ – ]. this widespread antibiotic use places selective pressure on bacterial ecosystems, enhancing survival of bacteria with resistant genes. such pressure has been shown to affect horizontal gene transfer rates between bacterial species [ ]. while most hospitals have antimicrobial steward- ship programs that implement guidelines for judicious antimicrobial use, often antibiotic use is critical to patient care. this often creates an environment that is conducive to the persistence of resistant pathogens. it has been well-documented that selective pressure from antimicrobials increases the mdro bacterial load colon- izing patients, and that the higher bacterial load leads to greater patient skin and hospital environmental contam- ination [ ]. conversely, the absence of selective pres- sure from antimicrobials results in lower mdro bacterial loads and leads to a lower likelihood of skin and environmental contamination [ ]. the genes from resistant bacteria can spread to the hospital environment and other individuals in the hospital, then spread to the greater community. cycling of such strains from the community can be another route for re-entry into the hospital. role of healthcare workers a primary transmission route of hospital-associated pathogens for patients is through contaminated health- care workers (hcw). thirty to % of hais may be spread by contaminated healthcare worker hands— hands that were contaminated either from direct contact with infected or colonized patients, or from their envir- onment [ ]. even without direct patient contact, healthcare workers can serve as vectors and spread path- ogens between environmental surfaces throughout the hospital [ ]. a meta-analysis and systematic review cal- culated that the pooled mrsa prevalence among hcw dalton et al. antimicrobial resistance and infection control ( ) : page of in non-outbreak settings was . % ( % ci, . – . %), with nursing staff at increased risk for mrsa carriage; nursing staff had an odds ratio for mrsa colonization of . ( % ci . – . ) when compared with other healthcare staff [ ]. while contamination is typically found on hcw hands, other wearable fomites, such as stetho- scopes, digital devices, white coats, and neckties, can com- monly be contaminated with bacterial pathogens including mrsa [ , ]. studies have concluded that pathogen transmission from colonized patients to hcw gowns and gloves is substantial, particularly for those whose job duties involve high contact activities [ ]. in addition to the potential role hcws play as vectors, increasing the risk of colonization and infection to pa- tients, there is also the occupational safety concern for infection to the workers themselves. hospital employees serve a critical function in society; a decreased labor force due to illness from infectious disease can have det- rimental economic consequences [ ]. in a -year study across dutch hospitals, there were reported mrsa outbreaks: outbreaks involved hcws, and in cases hcw acquired mrsa infections despite following the current safety precautions, showing that hcws are at risk as much or more so than the patients during these outbreak situations [ ]. other occupational safety con- ditions, such as elevated stress, poor supervision and leadership, and weak communication networks, can increase nosocomial pathogen spread [ ]. increased pa- tient density and overcrowding combined with under- staffing may lead to failure of mrsa control programs through decreased hcw hand-hygiene compliance, in- creased patient and staff movement between hospital wards, and overburdening of screening and isolation facilities [ ]. subsequently, high mrsa incidence leads to increased inpatient length of stay, which can exacer- bate conditions of overcrowding and foster a feedback loop that perpetuates hais [ ]. similar to patients, hcws could play a more active role in community transmission due to the greater frequency of hospital ex- posure, although this hypothesis has not been tested. in addition to patients and hcws, a hospital receives many daily visitors who contribute to the microbial composition of the hospital environment. it is estimated that the prevalence of pathogen colonization, including community-associated mrsa (ca-mrsa), in healthy asymptomatic individuals ranges from . to . % [ – ]. these studies showing higher prevalence rates in commu- nity visitors compared to common patient or hcw car- riage rates may be partly due to success of infection prevention and control policies such as environmental cleaning and hand hygiene compliance in hcw and pa- tients [ ]. of note, individuals who visit the hospitals may be there for contractual service, such as for deliveries. be- cause these individuals are not considered employees of the hospital, they may not be as well trained on infection con- trol measures nor may be subject to the infection control policies and practices that are job requirements of hospital- employed hcw. this is another understudied area in exist- ing literature. animals in the hospital the final aspect of one health that has received less at- tention in the context of hospital-associated pathogen control is the roles of animals. table summarizes se- lected studies that describe the relationship between humans and animals in the spread of infectious diseases. animals are potential sources of pathogens, including ones commonly considered nosocomial, which can spread to humans. it has been documented in multiple studies that mrsa strains found in companion animals such as dogs and cats are identical to epidemic strains found in human hospitals [ , , ]. there are many ways that animals, and their corresponding and unique microbial ecosystems, can positively and negatively enhance trans- mission of infectious pathogens. exposure to animals, from pets in the home to farm animal exposure, can in- crease an individual’s overall microbial diversity, which can then be protective against colonization of opportunis- tic pathogens [ – ]. this balance of being both a supply and deterrent of human pathogen colonization is the reason why animals are so essential to examine in any context, including the hospital environment. our under- standing regarding direction of transmission, colonization persistence, animal-human transmission rate, animal carriage and inter-species transmission risk factors, and the significance of companion animals as reservoirs for human pathogens are all incomplete. pets in the home there have been numerous examples of microbial shar- ing between people and their pets in the household, and pet ownership is a risk factor to acquire, maintain and spread potential pathogenic bacteria. for example, ferriera et al. found, in mrsa-infected outpatients households, cases of mrsa colonization in companion animals ( . %), of which shared pfge patterns from their owners, and no mrsa positive pets in the negative human control households [ ]. that study also found a human who was infected with mrsa resided with a dog colonized with methicillin-resistant staphylococcus pseu- dintermedius, a common veterinary pathogen in com- panion animals that occupies a similar niche as s. aureus and causes similar disease conditions in animals. it was hypothesized that sccmec could have transferred be- tween the related bacteria [ ]. another study found similar findings; one of the ( . %) study households of mrsa-infected humans contained a mrsa-positive pet; conversely they also evaluated human colonization dalton et al. antimicrobial resistance and infection control ( ) : page of table selected studies on potential transmission of pathogens between humans and animals in various settings organism comments reference ecological mrsa mrsa strains found in companion animals such as dogs and cats are identical to epidemic strains found in human hospitals [ ] mrsa resistance patterns and genetic make-up of mrsa isolates from dogs and cats are generally indistinguishable from the most prevalent hospital-associated mrsa strains in the human population [ ] mrsa increase in companion animal mrsa, including mdro, same clonal lines as ca&ha-mrsa [ ] mrsa phylogenomic analyses showed that companion animal isolates were interspersed throughout the epidemic mrsa pandemic clade and clustered with human isolates from the united kingdom suggesting a human source for isolates infecting companion animals [ ] pet ownership mrsa transmission of mrsa occurs between humans and companion animals and vice versa [ ] mrsa identification of indistinguishable mrsa isolates in both pets and humans in contact with them [ ] mrsa mrsa was found in pets from mrsa-positive owners in / ( . %) vs. none of the pets of the uninfected human controls. ¾ of these pairs had concordant pfge pattern [ ] mrsa mrsa-infected animal was initially identified, at least one mrsa-colonized person was identified in over one-quarter ( / ; . %) of the study households. by contrast, only one of the ( . %) study households of mrsa-infected humans contained a mrsa- colonized pet [ ] enterococcus % of the isolates from companion dogs had belonged to hospital-adapted clonal complex, screening of healthy humans living in contact with of the dogs under study resulted in the identification of a single, intermittent carrier. this person carried one of the sequence types recovered from his dog [ ] mrsa identical strains from both pets and their owners were identified. typical livestock-associated s. aureus lineages were observed in humans and/or companion animals and hospital and/or community-acquired s. aureus lineages were detected among pets. [ ] c. difficile pfge patterns of some dog and human c. difficile isolates were over % similar [ ] livestock mrsa ( . %) patients coming from a high-density farming area were positive for mrsa, ( %) had livestock-associated mrsa strains and ( %) non-la-mrsa strains [ ] mrsa patients exposed to pigs or veal calves were shown to have times higher incidence of mrsa colonization [ ] mrsa mrsa carriage in hcws in contact with livestock is -fold higher than in other hcws [ ] hospital mrsa dog was implicated as a reservoir for the re-infection of two nurses after their treatment to eliminate carriage of mrsa [ ] mrsa cat residing in a geriatric rehabilitation ward was implicated as the source of mrsa for nurses and patients [ ] mrsa, c. difficile zoonotic agents were isolated from out of ( %) dogs who visit hospitals, primary pathogen was clostridium [sic] difficile, which was isolated from ( %) fecal specimens, seventy-one percent ( / ) of these isolates were toxigenic [ ] mrsa acquisition of mrsa by a pet therapy dog that had visited an elderly care ward in a healthcare facility [ ] mrsa, c. difficile rates of acquisition of mrsa and c. difficile were . and . times as high, respectively, among dogs that visited human health-care facilities, c.diff % was toxigenic, mrsa hospital origin clone [ ] c. difficile canine fecal isolate from healthy dog who visits hospitals was indistinguishable from the major strain implicated in outbreaks of highly virulent cdad, which were occurring at increased frequency in the facility around the time the dog’s fecal specimen was collected [ ] veterinary hospitals mrsa cluster of five canine postoperative wound cases infected with mrsa were found to be associated with asymptomatic carriage of mrsa in one of the attending veterinary surgeons. the human and canine isolates were corresponded to the predominant epidemic strain prevalent in hospitals at this time [ ] mrsa mrsa was isolated from % ( / ) of household contacts or veterinary personnel and in all identified cases at least one human isolate identical to the initial animal isolate was found. [ ] mrsa comparison of genetic markers shows that identical or very similar strains disseminate among animals and veterinary personnel. companion animals harbor pvl-positive clones - twenty-six pets and five veterinary personnel carried pvl-positive s. aureus [ ] mr staph risk factors for nasal colonization by mrs in healthy humans: (i) being a veterinary professional (veterinarian and veterinary nurse) (p < . , odds ratio [or] = . , % confidence interval [ci, . – . ]), or have contacted with [ ] dalton et al. antimicrobial resistance and infection control ( ) : page of in homes with a mrsa-carrier pet and determined that over % ( / ; . %) owners were mrsa-positive [ ]. this higher association of pathogen carriage for humans and pets in the same households, and the identification of indistinguishable mrsa isolates in both pets and humans in contact with them, strongly suggests interspecies trans- mission but it does not indicate the direction of transmis- sion. however, given the preponderance of common human mrsa clones in household pets, it is possible that animals become contaminated through contact with colo- nized or infected humans and that they in turn serve as a source of re-infection or re-colonization [ ]. given that pets may clear carriage or contamination with removal from infected owners, veterinary guidance recommends contact isolation for household pets in the case of recurrent mrsa infection among humans in the household [ ]. pets in the hospital animals can contribute to the hospital microbial ecosys- tems by directly entering the hospital. a patient may require a service animal, which according to the ameri- cans with disability act, have the legal right to enter the hospital. therapy animals are employed in many health- care settings and may visit multiple patients and visitors during their time in the hospital. therapy animals are particularly important because they can visit multiple patients, multiple wards, and even multiple hospitals all within the same day [ , ], indicating their potential as an effective mechanical vector in the spread of patho- gens. finally, some hospitals allow for periodic or routine visits from patients’ personal pet(s) during inpatient care; in a survey of shea member hospitals, ( %) healthcare facilities allowed personal pet visitations, of which ( . %) did not have formal guidelines in place [ ]. in addition, resident animals in healthcare facilities have been known to be vectors of hospital-pathogens, such as the case reports of a cat residing in a geriatric re- habilitation ward, or a nurse’s visiting pet dog that were implicated as the sources of mrsa outbreaks [ , ]. since then, few studies have evaluated zoonotic disease carriage of therapy animals living in or entering the hos- pital. lefebvre et al. found that out of ( %) asymp- tomatic therapy dogs who visited hospitals had a zoonotic pathogen positive fecal sample. the primary pathogen was c. difficile, which was isolated from ( %) fecal specimens; % ( / ) of these were toxigenic and many were genotypically indistinguishable from the major strain implicated in ongoing outbreaks of highly virulent human c. difficile acute disease [ , ]. the group also identi- fied that acquisition rates of mrsa and c. difficile were . and . times higher, respectively among therapy ani- mals compared to household dogs, indicating their in- creased contact with hospitals could increase exposures to hais, similar to human risk factors [ ]. service animals, therapy animals, and personal pets will have different ex- posures, and thus have different microbial compositions. just as patients can bring microbes into the hospital from the community, animals can also serve as a vector between the hospital and community, and their unique microbial ecosystems could impact this vector function. food animals in addition to household pets, food animals, such as beef and dairy cows, poultry, and swine, each have unique mi- crobial compositions and can influence pathogens circulating in the community and the hospital. although the use of healthcare-prescribed antimicrobials in humans is an important risk factor in mdro colonization in the population and environment, the use of antimicrobials in food animal production also contributes—at times substan- tially—to the reservoir of resistance [ ]. medically- important antimicrobial drugs may be used in food animal production, as well as companion animal practice, contrib- uting to selection for and emergence of pathogens resistant to specific drugs, including those of critical importance to human medicine. food animal uses of antimicrobial drugs can influence the hospital environment indirectly via mdro-contaminated meat or other food products, indir- ectly via exposure of community members who live in proximity to agricultural production, and directly via ani- mal contact. for example, in a study matching mrsa- colonized incoming patient cases to non-colonized control patients, cases had over times higher odds of living near swine-rearing facilities [ ]. another study found that mrsa carriage in hcws in contact with livestock is - fold higher than in other hcws [ ]. similarly, patients exposed to pigs or veal calves in denmark were shown to have three times higher incidence of mrsa colonization [ ]. finally, in another study, ( . %) patients coming from a high-density farming region were mrsa-positive, table selected studies on potential transmission of pathogens between humans and animals in various settings (continued) organism comments reference one mrsa- or mrsp-positive animal (p = . , or = . , % ci [ . – . ] mrsa one veterinary nurse, who carried panton valentine leucocidin-positive st mrsa, also owned a st mrsp-positive dog [ ] mrsa mrsa was isolated from staff ( . %), four dogs ( %), and three environmental sites ( %), which all had the same pfge pattern. [ ] mrsa methicillin-resistant staphylococcus aureus, c. difficile clostridioides difficile, hcw healthcare worker dalton et al. antimicrobial resistance and infection control ( ) : page of which is similar to what is found in other non-rural set- tings, but ( %) had livestock-associated mrsa strains rather than ha- or general ca- strains [ ]. for more de- tail, other reviews have been published which discuss the role of livestock and food agriculture operations in the spread of community pathogens [ – ]. interventions to reduce exposure the challenge of complex microbial and pathogen inputs from community sources to the hospital environment— and the pathogen dynamics among individuals who are treated, visit, and work within in this setting—requires an integrative perspective to design interventions to reduce the risk of human exposure, colonization, and infection. therefore, focusing on individuals by themselves or a single type of mdro may provide incomplete answers. microbes, including pathogens, circulate between the hos- pital environment and the larger community, with individ- uals and animals serving as mechanical vectors. most interventions are designed to target only one sector, but multimodal strategies may be more successful to break this cyclic feedback loop. addressing the hospital environ- ment and animal sectors can reduce human exposure of microbes and pathogens, and human-focused interven- tions can reduce colonization risk. we will discuss inter- ventions within each one health domains, as shown in fig. , and their effectiveness to address community-level factors and patient infectious outcomes. for this review, effective interventions are defined as those which reduce or nullify exposure or colonization risk yet are feasible to implement in a clinical setting, using the cdc niosh’s (national institute of occupational safety and health) hierarchy of controls as a strategy for ranking the effect- iveness of interventions, as shown in fig. , where those grouped in the top of the graphic are potentially more effective and protective than those at the bottom. for mdro control, elimination or substitution, the most ef- fective forms of prevention against hazards would equate to elimination of the source of pathogen, such as creating policies that control animals into the hospital, thus limit- ing the risk of “sick” animals potentially carrying zoonotic mdro into the hospital. engineering and administrative controls, such as changing hospital design or altering hos- pital safety culture, can be effective but do not nullify the exposure hazard. personal protective equipment (ppe), such as gloves and gowns, are the most simplistic form of control measures, as they rely heavily on human motiv- ation and are prone to human error, so should not be the sole means of infection control, as evident by multiple studies showing variance in ppe compliance [ – ]. hospital interventions interventions targeted at the environmental sector have been shown to have downstream benefits on the micro- bial carriage and colonization of humans [ , , ]. in the literature, interventions targeting the hospital en- vironment are centered on “hands-on” manual cleaning/ disinfection protocols and “no-touch” decolonization technologies and isolation through facility or administra- tive design or through other engineering controls. clean- ing with detergents has been shown to reduce mrsa levels that exist in the healthcare environment; however, detergents can be inferior at killing microbes compared to disinfectants, and cleaning products can become fig. examples of infection prevention and control strategies within the one health domains dalton et al. antimicrobial resistance and infection control ( ) : page of contaminated, furthering the spread of pathogens in the hospital [ , ]. disinfectants, while shown to de- crease bacterial burden on a surface, can also release toxic fumes and can cause allergic and hypersensitivity reactions in hcw, which may limit the feasibility of in- creased use [ , ]. cleaning activities are behaviors and therefore may be more effective when monitored, ei- ther by direct observation, which is relatively easy and inexpensive but susceptible to human error, or with fluorescent markers, which offer an objective assessment of residual contamination after cleaning [ , ]. a number of studies suggest that targeted cleaning focused on highly-touched common fomites is more effective than general cleaning, not only in efficacy of actual de- contamination but also in effectiveness, since this inter- vention is feasible to implement frequently [ , ]. however, there are limitations to typical cleaning proce- dures. microbial properties of organisms, including bio- film development, can make them more resistant to detergents, and even common disinfectants [ , ]. a randomized controlled study that evaluated increasing daily cleaning frequency and targeted disinfection showed only modest decreases in patient vre infections (relative risk . , % ci . – . , p = . ), and no changes in the incidence of s. aureus bacteremia (rr . , . – . , p = . ) or c. difficile infection (rr . , . – . , p = . ) [ ]. this indicates that clean- ing itself is imperfect, possibly prone to human error. this is best captured in a natural experimental study by vietri et al., which found that a hospital move and adop- tion of radical new cleaning procedures did not result in a statistical decrease for mrsa colonization rates in patients and hcw [ ]. “no-touch” technologies include decolonization strat- egies that may be less prone to human error. these in- clude uv irradiation, which has been shown to be effective as a terminal disinfectant process after initial cleaning preformed to remove debris, but was seen to vary substantially based on location in a room relative to the uv device [ , ]. in addition to patient isolation rooms, aspects of the hospital built-environment design can contribute to infection control. chiefly, certain sur- face materials have antimicrobial properties, although these have been found to be variable [ ]. kim et al. found that the use of titanium dioxide-based photocata- lyst antimicrobial coating on common environmental touch surfaces significantly decreased mrsa acquisition rates in hospital patients (hazard ratio of contracting hospital-acquired pneumonia during the intervention period compared to baseline period: . ; % confidence interval . – . ; p = . ) [ ]. other no-touch environ- mental interventions include aerosolized hydrogen peroxide vapor, hepa-filtration systems, and negative-pressure rooms, which minimize aerosolized microbes and have been shown to be effective against mrsa and c. difficile [ – ]. if utilized, it is recommended these strategies are used as adjuncts to best cleaning and disinfection practices. unanswered questions remain – when to use fig. how infectious disease intervention strategies relate to the hierarchy of controls. legend: adapted from the national institute for occupational safety and health (niosh, www.cdc.gov/niosh/topics/hierarchy); ppe: personal protective equipment dalton et al. antimicrobial resistance and infection control ( ) : page of http://www.cdc.gov/niosh/topics/hierarchy disinfectants versus detergents, when to focus on no-touch decontamination processes versus hands-on manual clean- ing, and how best to monitor interventions and measure their effectiveness. human interventions human-centered interventions reported in the literature have focused primarily on hygiene: patient decolonization, hcw hand hygiene, and wearable fomites decontamin- ation. a meta-analysis evaluating patient washing with chlorhexidine washcloths and wipes in a hospital setting identified a total hai rate reduction (odds ratio (or): . ; % confidence interval (ci): . – . ; p = . ), al- though studies had moderate heterogeneity (i ( ) = %) [ ]. this effect was more evident in the gram-positive subgroup (or: . ; % ci: . – . ; p = . ) [ ]. hcw hand-hygiene campaigns are a major component of multi-faceted infection control interventions, and a separ- ate meta-analysis showed it had the strongest effectiveness for reducing nosocomial infection rates (median effect %, effect range . – %) compared to other interven- tions [ ]. however, hand-hygiene campaigns alone had a modest effect size. other facets of a bundled infection pre- vention and control bundle include antibiotic stewardship, another key pillar of human-centered infection control [ ]. part of this may be due to the imprecise relationship between hcw’s risk perceptions and how these percep- tions affect their use of risk-mitigating strategies. in fact, demographic, individual and organizational factors, includ- ing management structures, were found to influence risk perceptions and hcw’s adoption of infection control strat- egies [ ]. studies that have evaluated reasons for this dis- parity and ways to improve behavior to prompt adequate hand-hygiene protocol addressed determinants of know- ledge, awareness, action control, and facilitation of behav- ior. fewer studies addressed social influence, attitude, self- efficacy, and intention, but the study authors found that addressing combinations of different determinants showed better results [ ]. increased surveillance and targeted in- terventions against those colonized have been shown to be effective in some circumstances [ , ]. however such strategies have not been sufficient to control outbreaks in other situations [ – ] and are generally not recom- mended due to the high resource burden [ ]. contact precautions and isolation of patients known to be colo- nized with target pathogens has also been shown to be effective, although this is not a substitute for proper hygiene protocols [ ]. a recent advance in human-centered interventions is the adoption of human factors engineering, which is a dis- cipline that studies the capabilities and limitations of humans and the design of devices and systems for im- proved performance. in the context of hospital infection control, this deals with designing spaces and opportunities for individuals to avoid exposure and colonization to pathogens, a form of administrative control. this has the potential to identify major underlying causes and contrib- utors to a problem. it goes beyond education and training, which are often the focus of infection prevention interven- tions, to modify an individual’s context so that default de- cisions align with healthy and desired actions. it utilizes environmental design, such as handwashing or antiseptic alcohol stations at the exits of patient rooms and one-way human traffic flows, in a way that minimizes exposure to healthcare workers and other patients to effect down- stream reductions in the contamination of other hospital surfaces and individuals [ ]. this relies heavily on proper leadership for both implementation and oversight. human factors engineering systems models with audit and feed- back, when applied, can increase effective room cleaning and disinfection, decreasing bacterial bioburden in the pa- tient room [ , ]. an example of this is the addition goal setting and hcw engagement, resulting in a hospital safety climate, was associated with improved compliance (pooled odds ratio . , % confidence interval . to . ; i ( )= %) compared to the standard of training and education, observation and feedback, and reminders [ ]. animal interventions just as animals have not been extensively examined in their role as vectors of pathogens and other microbes, there are also few studies on interventions in animals in either a hospital or community setting. just as interven- tion programs focus on hand hygiene protocols in hcw because of their role as vectors of hospital-associated pathogen transmission between patients and the hospital environment, therapy and service animals may also fill a similar niche, but infection control programs that target animals in healthcare settings are lacking [ ]. there are recommended guidelines for animals entering into the hospital environment (service animals, therapy animals, personal pet visitations) [ , ], but the evidence of the recommended protocols’ effectiveness is based largely on extrapolation from human data and many recommended interventions have not been vali- dated in animals. numerous documents on the control of mrsa in people have been published [ , ], and many of the principles may be applied to control in animals. however, caution should be exercised in ex- trapolating guidelines for mdro control in people to animals because there may be significant differences in disease epidemiology [ , ]. because of their unique microorganism ecosystems and their role as an inter- active fomite – a living moveable system independently interacting with individuals and its environment – con- trols focused on inanimate environmental surfaces may not be effective for animals that enter the hospital or such strategies may result in unintended effects. dalton et al. antimicrobial resistance and infection control ( ) : page of while antimicrobial stewardship in human medicine has been shown to decrease hai prevalence in patients [ ], in a four-year study across australia, the level of antimicro- bial exposure in dogs and cats was less than half that for human exposure, and critically-important antimicrobials accounted for only % of all the antimicrobials prescribed over the study period [ ], so improvement of judicious use of antimicrobials in companion animals may not yield many benefits in some settings. at present, no controlled studies have been conducted to provide data on key ques- tions such as transmission between animals and humans in the hospital, and efficacy of decolonization procedures in animals. further research is needed in interventions within this one health domain. for future studies that adopt a one health approach to evaluate transmission pathways to patients that involve consideration of human, animal, and environmental reservoirs, relevant checklists for study con- duct and reporting exist [ , ]. discussion in this review, we have used a one health framework to discuss the importance of addressing the hospital envir- onment, the individuals who are treated, work, and visit the hospital, and the animals that directly and indirectly contribute microbial ecosystems, in the prevention and control of hospital-associated pathogens. hospitals are located within human and animal communities, and the microbial ecosystems of the hospital can be influenced by community-level factors, from individuals who enter the hospital that serve as vectors in the spread of mi- crobes, including pathogens, between the hospital and community. animals who enter the hospital can also serve in this role and may have altered vector function based on their unique microbial composition, which will be different based on the role they serve (service animals vs. therapy animal vs. personal pet). antimicrobial pres- sure in hospitals can be an incubator for mdro; the cyclic loop between the hospital and community then will continue to foster resistant microbial ecosystems over time. we have examined current interventions targeted at the hospital environment and to the patients and hcw in the hospital, and the efficacy and drawbacks of each. it has been shown that the most effective intervention programs are multi-modal and designed to minimize individual pathogen exposure before such exposure progresses to colonization and infection. however, environmental decon- tamination and human hygiene practices decrease but do not eliminate the risk of colonization in other individuals and hai rates seen in the hospital. a one health approach may assist in the development of novel research and multi- modal intervention approaches by considering the relation- ship between the patient, the hcws, and the hospital environment, and the role of the community. this includes known community-level risk factors for mrsa colonization in patients, such as pet ownership or living in an animal agriculture community [ , , , ]. the largest knowledge gap this review exposed was the lack of data within the animal one health domain. little research has been done to explore pathogen transmission between animals and humans, within a home or hospital setting, and no studies have looked at the role of decon- tamination of the animal sector to see if this minimizes bacterial burden on the animal and has downstream ef- fects on reduced transmission to individuals in contact. compounding this is the need to understand microbial ecosystem dynamics in the context of hospital spread, par- ticularly as such dynamics relate to microbial ecosystems unique to animals or humans, and how such ecosystems may even provide protection against the acquisition of pathogens through the sharing of potentially “beneficial” commensal microorganisms [ – ]. conclusions the complexities of hospital infection control deserve the joint focus of various disciplines. an integrated ap- proach is needed to guide both research pathways and public policy mediations. utilizing a one health frame- work in this brief review allowed us to visualize key gaps in the current knowledge base surrounding hospital in- fection control and can help direct future research and implementation efforts by suggesting opportunities for advancement in non-traditional conduits. abbreviations hai: hospital-associated infections; mdro: multi-drug resistance (micro)organisms; mrsa: methicillin-resistant staphylococcus aureus; ca- mrsa: community-associated mrsa; ha-mrsa: hospital-associated mrsa; vre: vancomycin-resistant enterococcus; sccmec: staphylococcal cassette chromosome mec; hcw: healthcare worker acknowledgements not applicable. authors’ contributions krd carried out literature review and drafted the manuscript, with edits from kcc, cr, and mfd. all authors read and approved the final manuscript. funding no specific funding sources were used for this literature review. this work was supported from the akc canine health foundation clinician-scientist fellowship -e availability of data and materials data sharing not applicable to this article as no datasets were generated or analyzed during the current study. ethics approval and consent to participate not applicable. consent for publication not applicable. competing interests the authors declare that they have no competing interests. dalton et al. antimicrobial resistance and infection control ( ) : page of author details department of environmental health and engineering, johns hopkins bloomberg school of public health, n wolfe st, w g jhsph ehe, baltimore, md , usa. division of medical microbiology, department of pathology, johns hopkins university school of medicine, baltimore, md, usa. department of molecular and comparative pathobiology, johns hopkins university school of medicine, baltimore, md, usa. received: september accepted: may references . destoumieux-garzon d, mavingui p, boetsch g, boissier j, darriet f, duboz p, et al. the one health concept: years old and a long road ahead. front vet sci. ; 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environmental microorganisms and childhood asthma. n engl j med. ; ( ): – . . song sj, lauber c, costello ek, lozupone ca, humphrey g, berg-lyons d, et al. cohabiting family members share microbiota with one another and with their dogs. elife. ; :e . . trinh p, zaneveld jr, safranek s, rabinowitz p. one health relationships between human, animal, and environmental microbiomes: a mini-review. front public health. ; (august): . publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. dalton et al. antimicrobial resistance and infection control ( ) : page of 	abstract 	introduction 	hospital-associated gram-positive pathogens 	the hospital environment 	the hospital built-environment 	hospital fomites 	the hospital microbial ecosystem 	human factors 	patient characteristics 	role of healthcare workers 	animals in the hospital 	pets in the home 	pets in the hospital 	food animals 	interventions to reduce exposure 	hospital interventions 	human interventions 	animal interventions 	discussion 	conclusions 	abbreviations 	acknowledgements 	authors’ contributions 	funding 	availability of data and materials 	ethics approval and consent to participate 	consent for publication 	competing interests 	author details 	references 	publisher’s note research article open access the characteristics and activities of child and adolescent mental health services in italy: a regional survey laura pedrini , giovanni colasurdo , stefano costa , michela fabiani , linda ferraresi , emilio franzoni , francesca masina , renato moschen , vittoria neviani , stefano palazzi , roberto parisi , antonia parmeggiani , antonio preti , cosimo ricciutello , marco bl rocchi , davide sisti , antonella squarcia , stefano trebbi , donatella turchetti , paola visconti , andrea tullini and giovanni de girolamo *, for the premia group abstract background: to date, no studies have assessed in detail the characteristics, organisation, and functioning of child and adolescent mental health services (camhs). this information gap represents a major limitation for researchers and clinicians because most mental disorders have their onset in childhood or adolescence, and effective interventions can therefore represent a major factor in avoiding chronicity. interventions and mental health care are delivered by and through services, and not by individual, private clinicians, and drawbacks or limitations of services generally translate in inappropriateness and ineffectiveness of treatments and interventions: therefore information about services is essential to improve the quality of care and ultimately the course and outcome of mental disorders in childhood and adolescence. the present paper reports the results of the first study aimed at providing detailed, updated and comprehensive data on camhs of a densely populated italian region (over million inhabitants) with a target population of , subjects aged - years. methods: unit chiefs of all the camhs filled in a structured ‘facility form’, with activity data referring to (data for inpatient facilities referred to ), which were then analysed in detail. results: eleven camhs were operative, including outpatient units, with a ratio of approximately child psychiatrists and psychologists per , inhabitants aged - years. all outpatient units were well equipped and organized and all granted free service access. in , approximately % of the target population was in contact with outpatient camhs, showing substantial homogeneity across the eleven areas thereby. most patients in contact in received a language disorder- or learning disability diagnosis ( %). first-ever contacts accounted for % of annual visits across all units. hospital bed availability was per , inhabitants aged - years. conclusion: the percentage of young people in contact with camhs for mental disorders is in line with those observed in previous epidemiological studies. the overall number of child psychiatrists per , inhabitants is one of the highest in europe and it is comparable with the most well equipped areas in the us. this comparison should be interpreted with caution, however, because in italy, child psychiatrists also treat neurological disorders. critical areas requiring improvement are: the uneven utilisation of standardised assessment procedures and the limited availability of dedicated emergency services during non-office hours (e.g., nights and holidays). keywords: child and adolescent mental health services (camhs), process of care, adolescence, child psychiatry * correspondence: gdegirolamo@fatebenefratelli.it irccs centro san giovanni di dio-fatebenefratelli, brescia-italy full list of author information is available at the end of the article pedrini et al. bmc psychiatry , : http://www.biomedcentral.com/ - x/ / © pedrini et al; licensee biomed central ltd. this is an open access article distributed under the terms of the creative commons attribution license (http://creativecommons.org/licenses/by/ . ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. mailto:gdegirolamo@fatebenefratelli.it http://creativecommons.org/licenses/by/ . background over the last years in italy, several studies have sur- veyed the characteristics and functioning of adult mental health services, which underwent a radical reform in (law no. ) [ ]; on the contrary, no studies to date have examined the characteristics, organisation, and functioning of child and adolescent mental health ser- vices (camhs). surprisingly, even in europe and inter- nationally there is a total lack of health services studies providing detailed information about the characteristics, functioning and activity data of camhs. this informa- tion gap represents a major limitation for researchers and clinicians because: (i) most mental disorders have their onset in childhood or adolescence [ ], effective interven- tions can therefore represent a major factor in avoiding chronicity; (ii) childhood and adolescence are especially vulnerable phases of individual development, and services aimed at preventing and managing age-specific risk fac- tors and related distress are thus of great public health relevance; (iii) registry and epidemiological data in italy show that up to % of the child and adolescent popula- tion may meet criteria for mental disorders [ ]; and lastly, (iv) interventions and mental health care are delivered by and through services, and not by individual, private clini- cians, and drawbacks or limitations of services generally translate in inappropriateness and ineffectiveness of treatments and interventions. therefore, information about services is essential to improve the quality of care, and ultimately the course and outcome of mental disor- ders in childhood and adolescence. in italy camhs are operative throughout the country within italian health districts, and each camhs is responsible for all child and adolescent mental health care within defined catchment area. in most regions (including emilia-romagna, where this survey took place) camhs are a component of departments of mental health, which provide child, adult, and geriatric mental health care as well addiction treatment. a specific characteristic of italian camhs is that they are responsible for the prevention, assessment, and treatment of both psychiatric and neurological condi- tions; this is a model framework that may be of interest to other nations struggling with similar problems. yet, the survey described in this paper specifically focused on mental disorders and their treatment. more detailed information on neurodevelopmental disorders was not within the scope of this study. this paper reports the results of the first study carried out in an european country, in a large area with more than millions inhabitants, aimed at assessing in detail physical characteristics, staffing arrangements, activities, and care patterns of inpatients and outpatients camhs. methods the study was conducted in emilia-romagna, a densely populated region in northern italy, with approximately million inhabitants and , children and adoles- cents aged - years. the area’s population size is simi- lar to that of some european countries (e.g., denmark, slovakia, finland), and overall the region has a larger population than of europe’s countries. all regional camhs agreed to participate in the study. each camhs appointed a study coordinator, who organised and supervised data collection through- out the project’s various phases. data collection two specific forms were developed for the camhs sur- vey: the “outpatient facility form (off)” and the “inpati- ent facility form (iff)”. both were based on the ‘facility form’, which had been previously used in a national sur- vey of acute psychiatric facilities in italy [ ]; these draft forms were revised several times and then pilot-tested in units. the final version of the off has items divided into the following sections: general information, environ- mental characteristics, technical equipment and service organisation, available treatments, collaboration with other health services and with schools, staff, procedures and activity data refering to . on the other hand, the final version of the iff has items divided into the following six sections: general infor- mation, environmental characteristics, staff, procedures, collaboration with child and adolescent outpatient units, and activity data refering to . the off was filled in by the chief physician of each camhs unit. a specific query was then run in the ser- vice’s computer-based registry in order to complete the “activity data refering to ” section. after data collection, a thorough quality control check was conducted, first locally throughout the region, and then centrally. monthly meetings were organised among all the study coordinators to verify data quality (missing data and misprints). this revision process lasted approximately months and ensured a rather low per- centage of missing data (< %). . . statistical analysis descriptive statistics were used to summarise facility characteristics and activity data. means, standard devia- tions, and data ranges were calculated for quantitative variables; bivariate statistics were performed for catego- rical variables using two-way tables with cramer’s v association coefficient, whereas for quantitative variables scatterplots with linear regression were performed. all pedrini et al. bmc psychiatry , : http://www.biomedcentral.com/ - x/ / page of analyses were conducted using spss, version . for windows. results outpatient camhs: environmental characteristics and technical equipment overall, the region’s camhs comprised outpati- ent units, of which were larger units (“cnpias”- centri di neuropsichiatria dell’infanzia e dell’adoles- cenza, i.e. child and adolescence neuropsychiatry centres) and of which were simple outpatients unit; all but one were public facilities. all participating units had a specific catchment area: most (n = ; %) had a catchment area of up to , inhabitants, and ( %) units were linked to a catchment area of more than , inhabitants. the target population of - years was less than , in units ( . %), of which ( . % of the total amount) had fewer than , inhabitants in the age range examined. the remaining ( %) units had a catchment area of more than , resident children and adolescents. approximately half of the units (for which facility his- tory information was available) (n = ; %) had been built over the last four decades (n = ; . %); units ( . %) had been built before (some had been fully refurbished). in most cases (n = , . %), the units were hosted in a building together with other public health services. twenty-five units ( . %) had a separate dedicated access, and a dedicated reception area was present in units ( . %). forty units ( . %) had a dedicated meeting room not used for clinical activities. soundproofing, an important privacy feature in outpatient settings, was ensured in units ( . %). all but units had at least one dedicated room for neuropsychiatric exams; most units ( ; . %) had at least one room for other clinical activities (most fre- quently, for clinical psychologists). in general, the participating units were equipped with games and other materials to entertain children (n = ; . %), and all had most of the technical instru- ments required for conducting medical exams (e.g. dia- phanoscope, ophthalmoscope, etc.); these were frequently available in all rooms used for outpatient activities (n = ; . %). most participating units (n = ; . %) had a dedicated physiotherapy and psychomotor rehabilita- tion room, and all had a specific room for speech and language therapy. clinical and neuropsychological tests were available in nearly all the units (n = ; . %). an electronic clinical database was available in units ( . %), and the paper database met italian privacy law requirements in ( . %) units. online access to major scientific journals was available in ( . %) units. outpatient camhs staff and functioning as shown in table the participating units employed full-time equivalent professionals i.e., child psychiatrists, clinical psychologists, speech therapists, psychomotor therapists, physiothera- pists and educators. the camhs mainly employed permanent staff, and temporary contracts were quite infrequent (n = ; . %). staff supervision was available in units ( . %), and specific burnout prevention programmes were con- ducted routinely in only a few units (n = ; . %). most units were open monday through friday until p.m. (n = ; . %), and / were also open on saturday mornings (n = ; . %), with . (± . ) weekly mean opening hours. all units granted direct free access, even without pae- diatric referral. the costs of clinical assessment (as with most clinical interventions), was fully covered by the national health service; a small fee was charged only by specific services, depending on the user’s age and disorder. on average, one-third of the units granted a first-visit appointment within a range of days to month (n = table full-time-equivalent (fte) camhs professionals camhs full time equivalent professionals n target population ( - )/n professionals n users/n professionals number professionals/ . target population ( - ) number professionals/ . total population mean (sd) range mean (sd) range mean (sd) range child psychiatrists . ( . ) - . ( ) . - . ( ) - . . psychologists (* = ) . ( . ) - . ( ) . - . ( ) - . . speech therapists . ( . ) - . ( ) . - . ( ) - . . physiotherapists . ( . ) - . ( ) . - . ( ) - . . educators (* = ) . ( . ) - . ( ) . - . ( ) - . . psychomotor therapists (* = ) . ( . ) - . ( ) . - . . ( ) - . . . * number of camhs without this health professional category pedrini et al. bmc psychiatry , : http://www.biomedcentral.com/ - x/ / page of ; . %), whereas in another third, the delay was over months (n = ; . %); a minority of units scheduled first visits within - days (n = ; . %). a specific protocol for emergency -hr referral (priority of emergency consultation over ordinary sched- uled visits) was present in ( . %) units. no camhs had a child psychiatrist on duty during night hours or holidays, and patients requiring treatment at these times were referred to ordinary e&a departments. in two third of the units (n = ; . %), first visits were conducted either by a neuropsychiatrist or psychol- ogist, depending on staff availability, and in units ( . %) the neuropsychiatrist was the professional in charge of first visits. diagnoses were formulated according to the interna- tional classification of diseases, tenth edition [ ] and were usually based on a detailed clinical interview of the patient and his/her parents. most interventions included counselling, individual rehabilitation training, and meetings with school tea- chers (table ). unconventional interventions, such as pet therapy and music therapy, were rarely practised (in and participating units, respectively). all camhs activities were documented in clinical records and frequently followed specific protocols; only a minority of the participating units shared treatment protocols with patients’ paediatricians. most units had at least one board-certified psy- chotherapist; most of these had a psychodynamic train- ing background ( units; . %), whereas systemic family psychotherapy was practised in units ( %), and cognitive-behavioural therapy in units ( . %). outpatient camhs activity data as show figure , the units evaluated and treated the entire range of mental and behavioural disorders table range of camhs activities and procedures (*) n (%) delivered treatments • meetings with schools for disabled children ( %) • counselling ( . %) • individual rehabilitation training-social skills training ( . %) • group rehabilitation training ( . %) • monthly meetings with welfare agencies ( . %) • psychoeducation ( . %) • consultation to paediatric firs aid ( . %) • parent training ( . %) • art therapy and labs ( . %) • cognitive behavioural group therapy ( . %) • psychoanalytic group therapy ( . %) • pet therapy ( . %) • music therapy ( . %) availability of consultations with professionals from other units (neuroradiologists, geneticists...) ( . %) cooperation protocol with adult mental health services ( . %) frequency of staff meetings • weekly ( . %) • biweekly ( . %) • monthly ( . %) • less frequently ( . %) protocol on communication of diagnosis to family members ( . %) cooperation protocol with paediatricians for the treatment of specific disorders • pervasive developmental disorder ( . %) • language disorders ( . %) • attention deficit/hyperactive disorder ( . %) • eating disorders ( . %) • chronic and disabling disorders ( . %) consent form for the use of psychotropic drugs ( . %) cooperation protocol with schools for special education needs ( . %) cooperation protocol with welfare agencies for abuse or family neglect ( . ) (*) information on the number (%) of units applying procedures pedrini et al. bmc psychiatry , : http://www.biomedcentral.com/ - x/ / page of with onset during childhood or adolescence. most patients contacting camhs for the first time during the year received a diagnosis of communication or learning disorders. it is important to note that all diag- noses recorded on the regional registry were clinical diagnoses and were not obtained via standardised assessment methods. as show figure , the average number of target population ( - years), for each camhs, was , ± , (range: , - , ), with almost perfect symmetry of distribution (fisher skewness = . ); and moderate dispersion (cv = . ). overall, approximately % of the - year target population was in contact with camhs in the emilia-romagna region in . as show figure , the average number of first visits during was , (± . ). first visit proportions were similar across the camhs, accounting for % of their total annual child psychiatric consultations. on average, in the camhs , ± , child or adolescent patients had at least one contact in , for an average of , ± , annual visits. each patient received on average or more visits by child neuropsy- chiatrists at that year. inpatient psychiatric facilities for children and adolescents the emilia-romagna region had seven inpatient facil- ities (all public) for children and adolescents with neuro- logical or behavioural problems; two were university clinics, and one was a day-hospital. figure distribution of all diagnoses in the target population ( - years). data refer to number of patients in treatment per , inhabitants aged - years, with standard deviations. c o n ta ct s w it h c a m h s y = , x + , r = , target population figure scatterplot of target population versus population in contact with camhs; strait line shows a linear regression curve. pedrini et al. bmc psychiatry , : http://www.biomedcentral.com/ - x/ / page of with respect to environmental characteristics, the old- est facility was built in , and all had been restruc- tured over the previous ten years. patients were generally hosted in double bedrooms; no single rooms were available. five inpatients units had dedicated rooms for clinical activities and meetings with families, and also had dedi- cated outdoor areas for patients (and their families). in terms of organisational procedures, one facility admitted only patients with eating disorders; the others were generic units admitting any patients of paediatric age with mental disorders. all the facilities included a day-hospital. six inpatients units had inclusion/exclusion criteria for admission: three units did not admit patients with sub- stance-related disorders, elevated suicide risk, or severe behavioural problems with aggressiveness, whereas all units treated severe mr or severe physical disabilities (e.g. blindness, paralysis...). one inpatient unit’s entrance was frequently kept locked, but all the other units had an open-door policy. the amount of time available for family member visits was not standard: one unit permitted only two-hour family visit per day, but the other units allowed family members to stay all day. only two inpatient unit had a maximum hospital stay duration ( days). in terms of personnel, the inpatient units employed child-psychiatrists, ( . %) of which were permanent staff. treating staff included a further professionals, mostly nurses, of whom ( . %) were permanently employed. the organisation of care during night shifts varied greatly by inpatient unit. we also collected inpatient activity data for the year : thirty-two ( ) beds were available for the inpati- ent treatment of mental disorders, i.e., “psychiatric beds” per , inhabitants aged - years. it should be noted, however, that these facilities can also admit patients from other regions; this proportion should therefore be interpreted with caution. overall, there were admissions for the inpatient treatment of mental disorders in , for a total of , hospital stay days. among the patients admitted in , ( . %) were at their first ever admission. moreover, a total of , patients were treated in day- hospitals in for a total of , admissions. discussion in europe many studies have been conducted in the area of mental health services research; even in italy, in the last years, nationwide surveys have been con- ducted and they have provided valuable information on the characteristics, functioning and quality of services [ - ]. on the contrary, the situation in the area of child and adolescent mental health care is very different, and to our knowledge, this is the first study which provides detailed, updated and comprehensive health services research data on inpatient and outpatient services. to our knowledge, the only study to date on this topic was conducted in england and wales, to assess the distri- bution and few key characteristics of psychiatric inpatient units [ ]. the only other studies available on mental health services for children and adolescents have focused mostly on costs [ ], historical functioning and staff data [ ], inpatient care effectiveness [ , ], service utilisa- tion and provision [ , ], treatment intensity [ ], and on determinants of unmet needs [ ]. although these studies have investigated relevant domains of mental health care for children and adolescents, none of them yielded quantitative data or provided detailed information on facility characteristics, staffing and patterns of functioning. environmental characteristics and technical equipment of camhs overall, the quality of camhs logistic and architectural characteristics were found to be quite good, with an important exception, however. for example, most units were hosted in a single building with other public health services and only a few units had a separate, dedicated entrance. this can poses a crucial access problem- especially for units hosted within adult mental health ser- vices, which young patients and their families may want to avoid due to the stigma associated with facilities serving severe adult patients affected by chronic disorders. this facility characteristic may therefore represent a serious obstacle to the care-seeking process. recent guidelines aimed at enforcing early intervention care protocols, emphasise the need for user-friendly settings, which better contacts with camhs f ir st v is it y = , x + , r = , figure scatterplot of linear correlation of first visits number versus contact with camhs; strait line shows linear regression line. pedrini et al. bmc psychiatry , : http://www.biomedcentral.com/ - x/ / page of appeal to young patients requiring treatment and their families [ , ]. the majority of facilities were well equipped in terms of space and materials for both assessing and entertain- ing young patients. electronic recording of basic clinical information was available in % of the units–a proce- dure that facilitates clinical evaluation and information sharing when needed. most units complied with legal requirements on privacy issues. camhs staff and functioning the number of child psychiatrists reported herein refers only to full-time equivalent physicians working in public mental health services. child- and adolescent psychia- trists working exclusively in private practice were not included, although we note that their actual number might be not marginal. our data showed that . child psychiatrists were available per , inhabitants, and specifically, . child psychiatrists per , inhabi- tants aged - years. in the usa, the rate of child psychiatrists per , children-adolescents varies from . in alaska to . in massachusetts, but it is not known whether these num- bers refer to full-time or part-time practice [ ]. more- over, child psychiatrists in italy also treat neurological disorders, as their medical training covers both special- ities. it is therefore not possible to disentangle the amount of time italian child psychiatrists devote to the treatment of psychiatric and neurological disorders, and these data should be compared with data from other countries with caution. in europe, the rate of child psychiatrists per , inhabitants in the year ranged from a low of . in bulgaria to a high of . in sweden, but data on major countries, such as belgium, spain, portugal, and england are currently lacking [ ]. moreover, the eurostat report does not provide information on the methods employed to retrieve the data reported therein, and in italy, reliable past information on this topic is unavailable. in line with the percentage of the case-mix, speech therapists represented the highest proportion ( %) of staff, and their number was approximately double that of other professional categories (e.g. child psychiatrists, psychologists, physiotherapists, and educators). direct free camhs access was granted in all units, even without paediatrician referral. yet, waiting times for first visits varied greatly across units, and only few made appointments within days. emergency referral was poor: the units had no staff on duty at night, and emergency referral / protocols were operative in only one third of the units. as shown by worral et al., [ ], this finding represents a main limitation for young patients with emergency needs, who end up receiving inappropriate interventions (e.g. by paediatricians or in adult mental health services). diagnostic and treatment procedures one major drawn-back in the functioning of italian camhs is their lack of standardised assessment proce- dures, and diagnostic procedures are based on unstruc- tured clinical evaluations. similarly, outcome measures are not routinely applied, making demonstration of ser- vice quality and cost-effectiveness, and especially mean- ingful comparison, very difficult. moreover, although italian camhs are also responsi- ble for prevention, only a minority of the participating units shared specific protocols with paediatricians. moreover, contrarily to current approaches in england [ ] and australia [ ], early intervention services in italy are still uncommon. lastly, italy has no dedicated system of care available for children and adolescents who abuse drugs and/or alcohol. users in young age are referred for assessment and treatment to standard addiction services attended by adult users. this state of affairs is surprising, consid- ering that italy does have dedicated courts and prisons for individuals committing crimes under the age of years. yet, no targeted care and rehabilitation pro- grammes are available for this vulnerable population. activity data considering both mental and neurological disorders, communication disorder- and learning disabilities made up approximately half of the entire service user case- mix in , whereas mood disorders were uncommon and accounted for only . % of the sample. this study surveyed only public services, but in italy, patients with minor anxiety or depressive disorders are more likely to be treated by private specialists (e.g., child psychiatrists, psychologists, and psychotherapists), which may in part explain the low prevalence of patients being treated for depression. the main diagnosis prevalence showed a wide range of variability across the eleven camhs. specialised ser- vices dedicated to specific disorders (e.g., learning disor- ders or autistic disorders) were available in some areas only; this situation may be linked to the higher preva- lence of some disorders in some areas vs. areas lacking dedicated services. we also cannot exclude that across- unit assessment procedure differences, as well as differ- ent referral systems across camhs might have contrib- uted to this prevalence data variability. in addition to learning- and communication disorders, anxiety and disruptive behaviour disorders represented an important proportion of the camhs case-mix, i.e., . % and . %, respectively. both conditions can be symptomatic of more severe and enduring disorders, pedrini et al. bmc psychiatry , : http://www.biomedcentral.com/ - x/ / page of and can even represent an ongoing-psychosis symptom profile [ ]. yet, in italy dedicated early assessment and intervention protocols for psychosis–for both the schi- zophrenia and bipolar spectra–are rarely available, despite increasing attention being focused on this issue worldwide [ ]. camhs case-mix examination, how- ever, is generally rare; with the exception of one norwe- gian study, which recently analyzed reasons for referral to camhs and found that sadness or depression accounted for % of patients in contact [ ]. we observed a homogeneous proportion of patients in contact with camhs (approximately % of the targeted population aged - yrs.), a finding in line with pre- vious epidemiological italian studies [ ]. prevalence stu- dies in other countries have shown that up to % of children and adolescents suffer from a mental disorder, and half of those presenting current psychopathology suffer from severe impairment [ ]; current figures about treatment rates, however, show that even in the area of child mental health there is a substantial treat- ment gap between children and adolescents who suffer from disorders and those who actually receive any kind of care [ ]. in italy, the prevalence of mental disorders among children and adolescents appears to be lower than in other countries ( %), and this finding is congru- ent with the lower prevalence of mental disorders also observed in the adult population [ ]. yet, the rate of % found in the only italian study conducted with methodological rigor [ ] did not include language and learning disorders, which conversely represent the lar- gest share of disorders treated at the camhs surveyed in the present study. we therefore assume that, even in italy, there is a a substantial treatment gap [ ]. both the proportion of young people in contact with services (approx. %) and the proportion of first visits ( %) with respect to the annual visit total were homo- geneous across the eleven camhs. this finding shows a rather uniform across-camhs distribution of resources, in terms of availability of professionals and location of facilities. at the same time, however, these data also suggest that all camhs are already treating the maximum number of patients in function of their available resources, and thus, that no more than % of the total consultations can be reserved to first visits. concerning inpatient facilities, a nationwide study conducted in england [ ] found a range of available beds throughout the nation ( . - . beds per , population aged yrs. and younger) which was close to the rate observed in the present study ( per , ). in italy, however, patients younger than years and suffering from severe disorders may also be admitted to ghpus if necessary, but this approach represents a main shortcoming in the mental health policy, due to the inadequacy of many adult inpatient services for a paediatric population. it would be interesting to provide an esteem of the camhs costs because these information might be use- ful for planning purposes and for comparison with other countries. in italy there have been a few detailed studies on costs of mental health care [ - ]. however there have been no studies about the specific costs of camhs, as done in other countries [ , , ]. in the emilia-romagna region, in a report [ ], it is sta- ted that the cost of all mental health care delivered through dmhs was . % of all health expenditures for that year; this figure includes hospital, outpatient and residential care. since dmhs deliver all mental health care, including both adult and child-adolescent popula- tions, it is impossible to disentangle this figure from the specific costs of camhs. this is an area which deserves additional efforts in italy. limitations and strength of the study the present is a cross-sectional study based on inter- views with service staff: diagnosis data therefore could not be checked with standardised instruments. although the study was limited to one large region of the coun- try, it is likely that the characteristics of camhs of this region are very similar to those of other regions of the north and centre of italy, which share very similar socioeconomic and cultural characteristics with the emi- lia-romagna region, as well as a similar architecture of health services. conclusions with these limitations in mind, the present study shows that camhs are distributed uniformly throughout a large italian region. the overall number of child psy- chiatrists per , inhabitants is one of the highest in europe and is comparable to the best-equipped areas in usa. although their logistic and technical character- istics appear satisfactory, future research efforts should address to the day-to-day functioning of these services. one main priority emerging from this survey is the need for standardised assessment procedures for both diagnostic and outcome-evaluation purposes to be intro- duced in these services. another important issue is that of poor focus on preventive and early intervention observed herein: most major mental disorders have their onset in adolescence, and early assessment and interven- tion targeting young people has become a worldwide priority. acknowledgements and funding the premia group includes the following regional coordinators and consultants: g. colasurdo, m. fabiani, l. ferraresi, e. franzoni, a. frigerio, f. masina, s. pedrini et al. bmc psychiatry , : http://www.biomedcentral.com/ - x/ / page of palazzi, r. parisi, a. parmeggiani, a. preti, c. ricciutello, m.b.l. rocchi, g. sartorio, a. serretti, d. sisti, a. squarcia, s. trebbi, d. turchetti, p. visconti, a. tullini. researchers include: m. alvarez, s. alighieri, r. calati, l. desideri, d. durante, f. favero, l. iero, g. magnani, s. micheletti, l. pedrini, v. pericoli, a. polmonari, e. raimondi, r. raggini, v. riboni, m.c. scaduto. we would like to thank all the staff who filled in the forms and made this survey possible; we also thank dr. benedetto vitiello for his valuable comments on the first draft of this article. this study was entirely funded by the italian ministry of health. author details irccs centro san giovanni di dio-fatebenefratelli, brescia-italy. ausl di forlì, uonpia, forlimpopoli-italy. uos psichiatria e psicoterapia età evolutiva, ospedale maggiore, bologna-italy. ausl di reggio emilia, uonpia, reggio emilia-italy. ausl di modena, uonpia, sassuolo (mo)-italy. a.o. universitaria orsola-malpighi, bologna-italy. ausl di cesena, uonpia, cesena-italy. u.o. npi ospedaliera-psicopatologia dell’adolescenza e u.o. npi ospedaliera-neurologia rimini-italy. il nespolo, ospedale privato villa igea, modena-italy. ausl di ferrara, uonpia, ferrara-italy. ausl di piacenza, uonpia, piacenza-italy. irccs institute of neurological sciences and department of neurological sciences, university of bologna. department of psychology, university of cagliari-italy. ausl of imola, uonpia, imola (bo)-italy. institute of biomathematics, university of urbino- italy. ausl di parma, uonpia, parma-italy. ausl di bologna, uonpia, monzuno (bo)-italy. ausl di ravenna, uonpia, ravenna-italy. ausl di bologna, ospedale maggiore, bologna-italy. ausl di rimini, uonpia, rimini-italy. authors’ contributions lp, gdg, ap have conceived the study, have selected and developed the assessment instruments, have organized and supervised data collection, were actively involved in data analyses and have drafted the paper. g.c., sc, mf, lf, ef, fm, rm, vn, sp, rp, ap, cr, as, st, dt, pv, at have made substantial contributions to the conception of the study and to the development and validation of instruments, have organized and supervised data collection in each catchment area, and gave comments on the various drafts. ds and mblr have carried out the statistical analyses. all authors have read and approved the final manuscript. competing interests the authors declare that they have no competing interests. received: july accepted: january published: january references . de girolamo g, bassi m, neri g, ruggeri m, santone g, picardi a: the current state of mental health care in italy: problems, perspectives, and lessons to learn. eur arch psychiatry clin neurosc , ( ): - . . kessler rc, berglund p, demler o, jin r, merikangas kr, walters ee: lifetime prevalence and age-of-onset distributions of dsm-iv disorders in the national comorbidity survey replication. arch gen psychiatry , : - . . frigerio a, rucci p, goodman r: prevalence and correlates of mental disorders among adolescents in italy: the prisma study. eur child adolesc psychiatry , ( ): - . . who-world health organization: tenth revision of the international classification of diseases and related health problems (icd- ). who press, geneve; 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( ) : – original scientific paper animal assisted therapy and perception of loneliness in geriatric nursing home residents zoran vrbanac , iva ze~evi} , marijana ljubi} , maja beli} , damir stanin , nika brklja~a bottegaro , gabrijela jurki} , branimir [krlin , ljiljana bedrica and damir @ub~i} university of zagreb, faculty of veterinary medicine, department of radiology, ultrasound diagnostics and physical therapy, zagreb, croatia psychiatric hospital for children and youth, zagreb, croatia university of applied health studies, zagreb, croatia university of zagreb, faculty of veterinary medicine, department of pathophysiology, zagreb, croatia university of zagreb, faculty of veterinary medicine, clinic for surgery, orthopedics and ophtalmology, zagreb, croatia university of zagreb, faculty of veterinary medicine, clinic for internal diseases, zagreb, croatia a b s t r a c t use of animals for therapeutic purposes, animal assisted therapy or aat is a method for improving quality of life for long-term inpatients. the object of this paper was to evaluate dog companionship as a form of aat and its effects on per- ception of loneliness in geriatric nursing home residents. the participants were involved in a six-month program of dog companionship three times weekly for minutes. there were residents included in the program, with a mean age of years. loneliness was measured by the short version of the ucla scale of loneliness. comparison of test results before and after participation in the program showed that dog companionship reduces the perception of loneliness. key words: dog, animal assisted therapy, geriatric nursing, loneliness introduction the use of companion animals in therapeutic pro- grams is increasingly being discussed nowadays, although such use has been known since the th century when a psychiatric hospital in england utilized pets to facilitate achievement of self-control in psychiatric patients – . in the s, the american child psychiatrist boris levin- son initiated pet-facilitated therapy, or pet-therapy, as a method of treatment for a variety of disorders . not ev- ery animal is suitable for therapy, and each case requires an individual approach. there is a difference between »animal-assisted activ- ity« and »animal-assisted therapy«. animal-assisted ac- tivity involves a patient passively observing the animal (e.g. fish in the aquarium), while in animal-assisted ther- apy the patients interact with the animal in a clinic visitation . there are number of investigations on aat and its ef- fect on human physical health – . evidence of benefits for psychiatric well-being appears to be even more pro- found – . numerous authors point to the importance of aat and, in particular, that the positive feedback be- tween the patient, animal, and therapist reduces many symptoms and improves the quality of life . stasi et al. reported a significant decrease in blood pressure values in nursing home inpatients after partici- pation in a six-week pet therapy program. ru`i} et al. concluded that dogs may help to maintain continuous physical activity in elderly cardiovascular patients, pro- moting improved physical capacity. cole et al. found that aat improves cardiopulmonary pressures, neurohormo- ne levels, and anxiety in hospitalized patients with heart failure. previous investigation also proved that recre- ational activities involving dogs benefits nursing home patients suffering from apathy , . people who are isolated or institutionalized often find comfort with friendly dogs and consider them as em- pathic listeners, so the presence of a therapy dog may be a catalyst to improve both verbal and nonverbal commu- nication skills in nursing home patients . the beneficial effect has been particularly demonstrated for depressive symptoms, loneliness, agitated behaviours and demen- tia , , . received for publication july , depending on the facility, the animals taking part in the program can either be kept at the facility or brought in as visitors to participate in the aat program with the goal of improvement in physical, social, emotional and cognitive functioning , . the animal is an integral part of the treatment of a specific condition or illness , . most of the research examining aat has been con- ducted in adults, especially the elderly population , – . animals influence the emotional well-being of patients in rehabilitation programs, hospitalized patients, and geri- atric nursing home residents . the quoted research showed that the presence of a pet in a facility enhances the day quality of life of nursing home residents. loneliness can be defined in different ways. most of the definitions emphasise that it is an unpleasant emo- tional and motivational state caused by the inability to satisfy the necessity for intimacy and belonging. it is known that loneliness has a negative correlation with self-esteem, satisfaction and self-actualization . the purpose of this paper was to determine whether the possibility of dog companionship as a form of aat re- duces the perception of loneliness in geriatric nursing home residents in order to evaluate the possibility of in- troducing aat to facilities such as nursing homes. materials and methods participants and procedure the research was conducted in the »trnje« nursing home after approval from the institutional review board. a group of participants ( men, women), mean and standard deviation of age . ± . , volunteered in the research program over a period of months. seventeen participants were already involved in other social activi- ties available in the nursing home (to include the acting section, clay modelling section, and choir). some of the participants ( ) were pet owners prior to their arrival in the institution, while the others experienced dog com- panionship for the first time during the program. all par- ticipants had no known allergies to animals. there were four dogs chosen for the program ( golden retrievers, german boxer and standard schnauzer). the mean and standard deviation of their age distribution was . ± . and the mean and standard deviation of their body mass distribution was . ± . . all dogs were socialized and of stable character, friendly, clinically healthy and regularly vaccinated against infec- tious diseases. they were brought to the facility and kept on leash several times prior to the beginning of the pro- gram for familiarisation with the environment and the staff. the program was monitored by facility’s professional team consisting of a defectologist, social-worker, medical doctor, work-therapist and other medical staff. having formed the group, a doctor of veterinary medicine intro- duced the dogs three times weekly in sessions for min- utes. the animal-assisted therapy was held in the facility garden, or in the activity hall in cases of inclement weather. each visit was conducted according to the gui- delines determined prior to the research. dogs were in- troduced to the participants and participants were al- lowed to interact with the dogs through touch, play, walking and verbal communication. the participants were not specifically directed to in- teract with the dogs and it was left to their own will to ex- press their feelings. staff helped and guided each subject to interact with dogs in accordance with participants’ goals. measurement the short version of the ucla scale of loneliness, adapted by lackovi}-grgin et al. was used in the re- search. the scale was applied twice, at the beginning of and six months after the intervention. allen and osha- gan proposed a short form of the ucla scale, compris- ing seven units (table ). each participant’s task was to evaluate statements about self-perception on the given scale from – ( meaning »doesn’t apply to me at all« and meaning »ap- plies to me completely«). the final result was formed as the linear combination of the results in each unit. in addition to the scale, a questionnaire made espe- cially for this research was used. the questionnaire con- sisted of demographic data (age, gender), and questions related to everyday life in the nursing home (activities, contacts with the other residents and/or family mem- bers, feeling of contentment). there was also a set of questions considering residents’ attitude towards ani- mals (prefers cat or dog, previously owned a pet) and their experience of the aat (evaluation of time spent with the animal, effect on their life quality, importance of taking care of a pet). social interactions observed during animal-assisted therapy as well as the residents’ behavior towards the animals during their association was evaluated by the re- search team. to determine whether the dog companionship as a form of aat reduces the perception of loneliness for sta- tistical analysis students’ t-test for paired samples was used. statistically significant difference between the sca- le results was set at p< . . results the data showed a statistically significant difference between the total score on scale of loneliness achieved be- fore and after aat (t= . ; df= ; p= . ). the most significant differences where present in the statement: i lack company (t= . ; df= ; p= . ) (table ). the questionnaire developed to evaluate everyday life in the nursing home showed that participants had dif- ferent activities in the facility, had contacts with friends/family, and also felt good living in the nursing home. from a set of questions considering residents’ at- titude towards animals we can point out that the inclina- tion towards owning a dog or cat between participants was equal (dog n= , cat n= ), of participants were not pet owners prior to our investigation, were dog owners, cat owners and were both dog and cat own- ers. z. vrbanac et al.: animal assisted therapy in geriatric nursing home, coll. antropol. ( ) : – furthermore, we wanted to find out if the results on the scale of loneliness differ between the participants who were pet owners prior to aat program and ones that were not. although our assumption that previous experience in pet ownership might be connected with greater effect of aat on reducing the loneliness, the re- sults revealed that there is no difference between partici- pants that were and those that were not prior pet owners in the influence of aat on perception of loneliness (t= – , ; df= ; p= , ). the participants’ behavior towards the dogs is shown in figure . the most frequent reactions were: talking to the dog, petting the dog, expressing joy by smiling and cheerfulness. it was noted that all of the participants ex- pressed joy, most of them petted and some talked to the dogs. the research also showed that half of the participants considered the availability of animal companionship very important, while participants felt that pet animals en- hanced their quality of life in the institution. most of the residents included in the investigation ( %) found tak- ing care of a pet important and enjoyed spending time with animals ( %). nearly all participants ( %) sta- ted that spending time with the animal enhanced their mood improvement (table ). during the six-month aat program, the authors of this study noticed additional impacts of the aat on the participants. several residents included in the program had been living a solitary life and had minimum or no communication with other inpatients. with time, they started reminiscing about pets they had previously own- ed, and sharing their experiences with other partici- pants. by the end of the study, the group would meet ear- lier than the time scheduled for the therapy and would engage in the free communication. the same was true af- ter the dogs were removed at the end of the session. discussion in adults, taking care of an animal is related to taking care of oneself with respect to daily activity, expressing emotions and communication. animal care contributes to improvement of emotional and psychological well-be- ing of nursing-home residents in a quantitatively mea- surable way. in our study we evaluated psychological effects of vis- iting dogs in a geriatric nursing home resident popula- tion, demonstrating an effect of aat on the reducing the perception of loneliness. of all participants involved in the study, of them had previously owed a pet. the interest for aat among these participants was expected, since banks and banks found out that the desire for aat strongly correlates with previous pet ownership. the results of the investigation showed that the time spent with the animal reduces the feeling of loneliness. besides that, it increases social behavior and thus im- proves psychological and psychosocial condition of par- ticipants. our results are in agreement with the previous research demonstrating that pet therapy enhances the daily quality of life of nursing home patients , , . although the results of this study cannot be general- ized because of the low number of participants, we find them to be promising. also, there was no control group in the investigation, rendering it impossible to definitively conclude that only aat itself had an effect on improving life quality and reducing the feeling of loneliness. how- z. vrbanac et al.: animal assisted therapy in geriatric nursing home, coll. antropol. ( ) : – table participants’ evaluation of conducted aat n % overall time spent with the animal pleasant unpleasant importance of time spent with the animal low medium high mood improved during association with the animal yes no quality of life improved due to aat yes no did you find caring for the animal fulfilling yes no talking to the dog petting the dog expressing joy fig. . participants’ behavior towards the dog. table scale of loneliness . i lack company. . i have not felt close to someone for a long time. . i don’t share my thoughts and ideas with other people. . no-one knows me well. . my social relations are superficial. . being unsociable makes me unhappy. . people are around me, but not with me. ever, we can discuss the connection between these vari- ables and the aat. to conclude, this investigation showed that participa- tion in a dog visitation program during a six-month pe- riod reduced the perception level of loneliness in all par- ticipants. during the program, all participants enjoyed spending time with the dogs and considered taking care of the animals and the program itself significant for the enhancement of the quality of life in the institution. our observation and subjectively evaluation showed that physical activity and interaction among participants in- creased in the aat. the results of the investigation offer a possibility of introducing effective and economic aat programs that would help reduce physiological and psychosocial health problems related to institutionalization in elderly adults. most geriatric nursing homes offer a variety of activi- ties with the purpose of enhancing quality of life through social interaction and physical activity. we believe that offering an aat program as a low cost therapeutic inter- vention would significantly contribute to improving the quality of life for nursing home residents. r e f e r e n c e s . serpell ja, in the company of animals: a study of human -ani- mal relationship (basil blackwell, oxford, ). — . manning a, serpell ja, animals and human society (routledge, london, ). — . podberscek a, anim welfare, ( ) . — . burch mr, baustad lk, duncan sl, fredrickson m, tebay j, the role of pets in therapeutic programmes. in robinson ih (ed) the waltham book of human-animal interactions: benefits and responsibilities of pet ownership (elsevier science ltd., oxford, ). — . fine ah, hand- book on animal-assisted therapy, theoretical foundations and guidelines for practice (elsevier, london, ). — . cole km, gawlinski a, steers n, kotlerman j, am j crit care, ( ) . — . braun c, stangler t, narveson j, pettingell s, complement ther clin pract, ( ) . — . shubert j, us army med dep j, ( ) . — . banks mr, banks wa, j gerontol a biol sci med sci, ( ) . — . chu ci, liu cy, sun ct, lin j, j psychosoc nurs ment health serv, ( ) . — . dimitrijevi] i, psychiatr da- nub, ( ) . — . marx ms, cohen-mansfield j, regier ng, dakheel-ali m, srihari a, thein k, am j alzheimers dis other demen, ( ) . — . rossetti j, king c, j psychosoc nurs ment health serv, ( ) . — . cirulli f, ann ist super sanita, ( ) . — . cirulli f, borgi m, berry a, francia n, alleva e, ann ist super sanita, ( ) . — . stasi mf, amati d, costa c, arch gerontol geriatr, ( ) . — . ru@i] a, mileti] b, ru@i] t, per[i] v, la[karin g, coll antropol, ( ) . — . colombo g, buono md, smania k, raviola r, de leo d, arch gerontol geriatr, ( ) . — . berry a, bor- gi m, terranova l, chiarotti f, alleva e, cirulli f, psycho- geriatrics, ( ), . — . lafrance c, garcia lj, labre- che j, j commun disord, ( ) . — . harris m, gellin m, caring, ( ) . — . sellers dm, act adapt aging, ( ) . — . jorgenson j, image j nurs sch, ( ) . — . baun m, cardiello f, jassen j, the use of avian companionship to alleviate depression, loneliness, and low morale during translocation of the older adult into skilled rehabilitation unit. in: proceedings ( th international conference: animals & us, montreal, canada ). — . lang ue, jansen jb, wertenauer f, gallinat j, rapp ma, eur j integra- tive med, ( ) . — . kawamura n, niiyama m, niiyama h, psychogeriatrics, ( ) . — . reed r, ferrer l, villegas n, rev. latino-am. enfermagem, ( ) . — . roth j, int journal psychosoc rehabil, ( ) . — . neki] m, loneliness, solitude and their correlates in late adolescence. graduation thesis. in croat. (uni- versity of zadar, zadar, ). — . lackovi]-grgin k, grgin t, sori] i, penezi] z, psihologijske teme, - ( ) . — . allen rl, oshagan h, pers indiv differ, ( ) . — . staats s, pierfelice l, kim c, candell r, j am vet med assoc, ( ) . — . hooker sd, freeman lh, stewart p, holist nurs pract, ( ) . — . menna lf, fontanella m, santaniel- lo a, ammendola e, travaglino m, mugnai f, di maggio a, fioretti a, int psychogeriatr, ( ) . z. vrbanac university of zagreb, faculty of veterinary medicine, department of radiology, ultrasound diagnostics and physical therapy, heinzelova , zagreb, croatia e-mail: zvrbanac@vef.hr terapija potpomognuta @ivotinjama i osje]aj usamljenosti kod osoba u domu za starije i nemo]ne osobe s a @ e t a k kori{tenje `ivotinja u terapijske svrhe (engl. animal assited therapy, aat) jedan je od na~ina pozitivnog utjecaja na kvalitetu `ivota ljudi koji dulji vremenski period borave u ustanovi. cilj rada bio je utvrditi da li mogu}nost boravka sa psom kao oblik aat utje~e na smanjenje osje}aja usamljenosti kod osoba smje{tenih u domu za starije i nemo}ne. korisnicima doma je u razdoblju od mjeseci omogu}en boravak sa psom tri puta na tjedan u trajanju od minuta. u istra`ivanju je sudjelovao ispitanik prosje~ne dobi godina. kao mjera usamljenosti kori{tena je kratka verzija ucla skale usamljenosti, a u obradi rezultata t-test za zavisne uzorke. usporedba rezultata prije i nakon programa aat pokazale je da boravak sa psom smanjuje osje}aj usamljenosti. z. vrbanac et al.: animal assisted therapy in geriatric nursing home, coll. antropol. ( ) : – _lamm.pdf can j infect dis med microbiol vol no july/august pw lam, av page. pasteurella multocida non-native joint infection after a dog lick: a case report describing a complicated two-stage revision and a comprehensive review of the literature. can j infect dis med microbiol ; ( ): - . prosthetic joint infections (pjis) are commonly caused by pathogens such as staphylococcus aureus and coagulase-negative staphylococci; however, other microbial etiologies and specific risk factors are increasingly recognized. pasteurella multocida is a gram-negative coc- cobacillus that is part of the normal oral flora in many animals, and is particularly common in dogs and cats. pjis caused by p multocida have been reported only rarely in the literature and typically occur in the context of an animal bite or scratch. the present article describes a p multocida joint infection that occurred after a dog lick and compli- cated a two-stage revision arthroplasty. a comprehensive review of the literature regarding p multocida pjis follows. key words: dog bite; dog lick; pasteurella multocida, prosthetic joint infection l’infection à pasteurella multocida non indigène d’une articulation léchée par un chien : rapport de cas d’une révision compliquée en deux étapes et analyse bibliographique approfondie les infections sur prothèse articulaire (ipa) sont souvent causées par des pathogènes comme le staphylococcus aureus et les staphylocoques à coagulase négative. cependant, on constate de plus en plus d’autres étiologies microbiennes et de facteurs de risque particuliers. le pasteurella multocida, un coccobacille à gram négatif qui fait partie de la flore orale normale de nombreux animaux, est particulièrement courant chez les chiens et les chats. peu d’ipa causées par le p multo- cida sont signalées dans les publications scientifiques, mais elles se produisent surtout après une morsure ou une griffure d’animal. le présent article décrit une infection à p multocida qui s’est manifestée après que l’articulation a été léchée par un chien et une arthroplastie de révision compliquée en deux étapes. une analyse bibliographique approfondie de l’ipa à p multocida suit. pasteurella multocida non-native joint infection after a dog lick: a case report describing a complicated two-stage revision and a comprehensive review of the literature philip w lam bscphm md , andrea v page bsch msc md frcpc , prosthetic joint infections (pjis) are common, occurring in approxi-mately % to % of all joint replacements ( ). bacterial seeding of the prosthetic joint can occur during surgery or afterward via hema- togenous spread. pathogens such as staphylococcus aureus and coagulase- negative staphylococci account for the majority of pjis; however, other factors, such as the joint involved, timing of infection postoperatively, and comorbidities, can influence the microbiology ( ). risk factors for pjis include older age, diabetes, rheumatoid arthritis, immunosuppres- sive medications, malignancy and history of arthroplasty revision ( ). perioperative factors, such as hematoma formation, superficial surgical site infection, wound drainage and wound dehiscence, have also been identified as risk factors ( ). in the present report, we describe a two-stage revision arthroplasty that was complicated by a pasteurella multocida joint infection follow- ing a dog lick, and present a comprehensive review of the literature surrounding p multocida pjis. case presentation a -year-old woman presented to the emergency department with a five-day history of chills, progressive right hip pain and difficulty ambulating. her medical history was significant for a right total hip arthroplasty eight years previously due to osteoarthritis and severe obesity. she experienced an acute postoperative wound infection requiring irrigation and debridement and a second infection two years later requiring a staged revision. one year before presentation, she began to experience a series of monomicrobial pjis that were treated with a combination of surgery and antimicrobial therapy as follows: staphylococcus lugdunensis (two-stage revision, ceftriaxone), klebsiella pneumoniae (irrigation and debridement with liner exchange, ciproflox- acin), coagulase-negative staphylococcus (first stage of a planned two-stage revision with cement spacer, vancomycin) and candida albicans (cement spacer exchange, fluconazole). two months before presentation, she under- went excision of all hardware in the hip as part of a planned two-stage joint revision given recurrent infections with the cement spacer in situ. at that time, she received a six-week course of ertapenem for a joint infection with class a extended-spectrum beta-lactamase (esbl)-producing escherichia coli, with a vacuum-assisted wound dressing of the surgical site. at presentation, she was afebrile, but examination of the right hip revealed a nonhealing, erythematous wound with purulent discharge. she had leukocytosis ( , cells/µl) and elevated inflammatory markers (erythrocyte sedimentation rate mm/s, c-reactive protein mg/l), and was immediately taken to the operating room for irrigation and debridement. diagnosis three of three operative cultures of synovial tissue and fluid were posi- tive for p multocida (susceptible to ceftriaxone, imipenem, levoflox- acin, meropenem, penicillin and trimethoprim/sulfamethoxazole) (table ) and corynebacterium striatum (susceptible to vancomycin and gentamicin, resistant to erythromycin and penicillin) (table ). bacterial identification was confirmed using fatty acid methyl ester analysis with gas chromatography, and susceptibilities were deter- mined using sensititre susceptibility mic plates (trek diagnostic systems, usa). of note, she was also confirmed to be colonized with esbl-producing organisms based on rectal swabs obtained as part of routine infection control screening practices then in place. on further review this open-access article is distributed under the terms of the creative commons attribution non-commercial license (cc by-nc) (http:// creativecommons.org/licenses/by-nc/ . /), which permits reuse, distribution and reproduction of the article, provided that the original work is properly cited and the reuse is restricted to noncommercial purposes. for commercial reuse, contact support@pulsus.com department of medicine, university of toronto; division of infectious diseases, mount sinai hospital, toronto, ontario correspondence: dr andrea v page, mount sinai hospital, suite , university avenue, toronto, ontario m g x . telephone - - ext , e-mail apage@mtsinai.on.ca pasteurella multocida infection can j infect dis med microbiol vol no july/august questioning, she was found to live with five dogs and two cats, and reported allowing her dogs to lick a superficial laceration on her right lower leg that she had sustained in a fall just before symptom onset; she denied allowing her pets to lick her surgical wound site. on the basis of her most recent culture results and known esbl colonization, she was treated with intravenous vancomycin and ertapenem for six weeks. one month following admission, she was discharged to a rehabilitation facility with instructions to avoid close pet contact with any unhealed or open wounds. she responded well to antimicrobial therapy and a vacuum-assisted dressing. two months later, the patient underwent the second stage of her planned two-stage revision, with hip prosthesis re-implantation without complications. she remains free of infection after months of follow-up. discussion p multocida is a gram-negative coccobacillus that is part of the normal oral flora in many animals, including domestic dogs and cats ( , ). infections caused by p multocida may follow an animal bite or scratch, and range from cellulitis to septic arthritis and osteomyelitis ( ). respiratory infections can also occur, especially in patients with a his- tory of pulmonary disease or immune suppression ( ). other less com- mon infections include bacteremia, endocarditis, meningitis and intra-abdominal infections ( ). although our case is unique in that infection occurred after exci- sion arthroplasty in the midst of a two-stage revision, pjis caused by p multocida have been reported in the literature and typically occur in the context of an animal bite or scratch. a comprehensive literature review revealed documented cases of p multocida pjis, all of which involved either the hip or knee joint (table ) ( - ). of the documented cases, almost all patients had a history of animal contact, with cases of soft tissue injury as a result. twenty-two of the cases involved cats, while cases involved dogs. women have been shown to experience cat bites more frequently compared with men ( ), and this may explain why of the reported cases of p multocida pjis involved women. known risk factors for pjis that were also present in patients with p multocida pjis included older age (mean . years), rheumatoid arthritis ( of patients [ . %]), corticosteroid use ( of patients [ . %]), other immunosuppressive therapy (two of patients [ . %]) and malignancy (one of patients [ . %]). the presumed pathogenesis of p multocida pjis following animal contact involves the inoculation of bacteria into soft tissues causing bacteremia and subsequent hematogenous seeding of prosthetic material. this is supported by the fact that most documented cases of p multocida pji occur remote from prosthesis implantation (months to years) and shortly after animal contact (days to weeks) (table ). only two cases documented animal contact > month before onset of clin- ical signs or symptoms ( , ). despite the importance of biofilm formation in the pathogenesis of typical pjis, the characteristics of p multocida biofilm formation have not been well studied. animal strains of p multocida have been shown to produce biofilms in vitro ( ); however, in vivo evidence is lacking. romanò et al ( ) performed an in vitro spectrophotometric screening with positive control testing in their reported case of p multocida pji but found no biofilm production in their isolate. the case we presented represents only the sixth documented report of p multocida non-native joint infection following a dog lick, and the first to occur after excision arthroplasty. our patient’s extensive history of pjis requiring multiple surgical revisions likely contributed to the increased risk for subsequent infections. although the patient’s hard- ware was surgically removed two months before presentation, under- lying joint damage likely facilitated bacterial adhesion and infection. we suspect the patient’s superficial laceration on the lower leg served as a portal of entry for bacteria from the dog’s saliva, facilitating hema- togenous spread and seeding of the damaged hip joint. although direct inoculation of the surgical wound by a dog lick was possible, both the history and the presence of a vacuum dressing made this less likely. p multocida infections following close pet contact have also occurred with other foreign materials including breast prostheses ( , ), vascular stent graft ( ), peritoneal dialysis catheters ( ) and hemodialysis lines ( ). however, foreign material is not a pre- requisite for infection, as illustrated by the present case (postexcision arthroplasty), as well as in three cases of respiratory pasteurellosis, which developed in patients providing palliative care to their pets ( ). these cases demonstrate the importance of counselling patients about the risk for zoonotic infection and the steps that can be taken to potentially reduce this risk, including good hand hygiene after pet contact and before dressing changes, covering the wound at all times, avoiding direct pet contact with the surgical site or other wounds, and reporting any animal-induced wounds to a physician. moreover, facilities that use animal-assisted interventions (also known as pet therapy) should ensure that institution-specific infection con- trol policies are consistent with published guidelines ( ) to minimize the risk for zoonotic infection. isolates of p multocida from human infections continue to be suscept- ible to most antibiotics including penicillin, amoxicillin-clavulanate, doxycycline, third-generation cephalosporins, fluoroquinolones and carbapenems ( - ). infections caused by beta-lactamase producing p multocida have been reported in respiratory infections but remain uncommon ( , ). it is important to note that while most human iso- lates remain susceptible to beta-lactams, strains isolated from animals have demonstrated marked resistance to a variety of antibiotics ( ). furthermore, empirical treatment of a pji in the context of a recent animal bite should be directed against a polymicrobial microbiota including gram-positive and gram-negative aerobes, and anaerobes, consistent with the expected oral flora of the animal. early cases of p multocida pjis were treated with penicillin alone ( - , ). although there were more cases of treatment failure in this group, these patients were also less likely to be treated surgically (table ). more recent reports have successfully used a third-generation cephalosporin, beta-lactam/beta-lactamase inhibitor combination or fluoroquinolone in addition to surgical intervention. interestingly, linezolid, an oxazolidinone with gram-positive activity has been shown to demonstrate in vitro activity against p multocida ( ). ferguson et al ( ) successfully treated a penicillin-allergic patient with p multocida pji using a combination of linezolid and ciprofloxacin in conjunc- tion with surgical debridement, joint lavage and replacement of the joint liner. it is unclear whether combination therapy is more effect- ive than monotherapy for the treatment of p multocida pjis, despite several case reports describing the successful use of dual antibiotics ( , , , , , , , , ). current guidelines recommend treating table in vitro susceptibility profile of pasteurella multocida isolate antimicrobial agent susceptibility mic, µg/ml ceftriaxone susceptible ≤ . imipenem susceptible ≤ . levofloxacin susceptible ≤ . meropenem susceptible ≤ . penicillin susceptible . trimethroprim/sulfamethoxazole susceptible ≤ . mic minimum inhibitory concentration table in vitro susceptibility profile of corynebacterium striatum isolate antimicrobial agent susceptibility mic, µg/ml erythromycin resistant ≥ gentamicin susceptible ≤ penicillin resistant vancomycin susceptible . mic minimum inhibitory concentration lam et al can j infect dis med microbiol vol no july/august table in vitro susceptibility profile of p. multocida isolate antimicrobial agent susceptibility* mic† (µg/ml) ceftriaxone s ≤ . imipenem s ≤ . levofloxacin s ≤ . meropenem s ≤ . penicillin s = . trimethroprim/sulfamethoxazole s ≤ . * r – resistant, s – susceptible; †mic – minimum inhibitory concentration table literature review of documented pasteurella multocida prosthetic joint infections author (reference), year age, years/ sex risk factors site time from prosthesis animal contact time to symptoms surgical intervention antibiotic treatment* outcome griffin et al ( ), /f ra, cs tka months cat scratch days none ampicillin cure maurer et al ( ), /f ra, cs tka years dog lick – none penicillin × weeks cure sugarman et al ( ), /f ra, cs tka weeks dog lick – none penicillin × weeks failure, revision arvan and goldberg ( ), /f nr tka months cat bite week debridement, joint lavage and irrigation/suction drainage ( weeks) penicillin × weeks cure spagnuolo ( ), /f nr tka months cat bite days none penicillin × weeks cure gomez-reino et al ( ), /f nr tka years cat bite day none cephalothin × weeks, cephalexin × weeks failure, revision mellors and schoen ( ), /f ra, cs b/l tka nr cat scratch days joint lavage penicillin × weeks cure orton and fulcher ( ), /f nr b/l tka years cat bite h none ampicillin × days, penicillin + tetracycline × weeks failure, revision braithwaite and giddins ( ), /f diabetes tha years cat bite nr single stage revision penicillin + flucloxacillin × weeks cure gabuzda and barnett ( ), /f nr tka months cat bite days debridement, removal of prosthesis, placement of cement spacer ampicillin/sulbactam × weeks, penicillin × weeks cure guion and sculco ( ), /f ra, cs tka years dog scratch days two-stage revision cefotaxime × weeks cure antuna et al ( ), /f ra tka year dog bite months single-stage revision ciprofloxacin × weeks cure maradona et al ( ), /f diabetes tka months dog bite days debridement, joint lavage penicillin × weeks, ciprofloxacin × weeks cure takwale et al ( ), /f ra, mtx, cs tha years cat scratch day two-stage revision benzyl penicillin × weeks, ciprofloxacin × weeks cure chikwe et al ( ), /m nr tha years dog contact – two-stage revision unknown cure ciampolini et al ( ), /f nr tka months cat scratch weeks two-stage revision benzyl penicillin + ciprofloxacin, amoxicillin + ciprofloxacin × weeks cure mehta and mackie ( ), /f ra, cs tha years cat scratch month single-stage revision benzyl penicillin × week, ciprofloxacin × weeks cure mehta and mackie ( ), /f ra, mtx, cs tha years cat scratch nr two-stage revision benzyl penicillin × weeks, ciprofloxacin × weeks cure polzhofer et al ( ), /f nr tka months cat bite days arthroscopic debride- ment, synovectomy, irrigation/suction drain- age ( days) ampicillin/sulbactam + clindamycin × weeks cure stiehl et al ( ), /m nr tka days dog contact, horse injury – two-stage revision ciprofloxacin and piperacillin/tazobactam cure zebeede et al ( ) /f sle, aps, cs tka years cat scratch weeks none ciprofloxacin × weeks cure heym et al ( ), /f nr tka year dog lick weeks synovectomy, removal with reimplantation doxycycline + amoxicillin × weeks failure, revision serrano et al ( ), /m nr tka years cat scratch nr joint lavage amoxicillin/clavulanate × weeks, ciprofloxacin × weeks + tmp/smx × weeks cure kadakia and langkamer ( ), /f breast carcinoma tka months cat bite – days arthroscopic joint lavage cefuroxime × weeks, ciprofloxacin × weeks cure continued on next page pasteurella multocida infection can j infect dis med microbiol vol no july/august nonstaphylococcal pjis with four to six weeks of antimicrobial therapy ( ). of the case reports with documented duration of therapy, were treated with at least four weeks of antibiotics and were treated with > weeks of antibiotics (table ). the present report represents the first case of p multocida joint infection successfully treated with ertapenem. the decision to treat with ertapenem was based on its documented efficacy in vitro against p multocida ( ), the patient’s positive esbl screening swabs and his- tory of pji caused by esbl-producing organisms and the ease of out- patient dosing. the presence of c striatum in all operative cultures also prompted treatment with vancomycin. in one study of the microbiol- ogy of infections after animal-induced injuries, corynebacterium spe- cies accounted for % of aerobic bacteria isolated from infected dog bite wounds ( ). however, corynebacterium species are part of normal human skin flora and, therefore, may have entered the wound from the patient’s skin postoperatively during prolonged wound healing. the optimal surgical management of pjis should be individualized. our literature review demonstrated a wide spectrum of surgical inter- ventions, including no intervention (seven of patients [ . %]), lavage only (four of patients [ . %]), debridement and lavage (four of patients [ . %]), debridement with replacement of exchangeable components (six of patients [ . %]), single-stage revision (four of patients [ . %]) and two-stage revision (six of patients [ . %]). earlier case reports of p multocida pjis were more likely to be treated nonoperatively. of the seven patients treated nonoperatively, three ( . %) failed antimicrobial therapy alone ( , , ). the benefits of less-invasive interventions must be bal- anced with the risk of treatment failure. algorithms have been developed by expert panels to identify patients with pjis suitable for less-invasive interventions ( , ). factors in the algorithm include duration of illness, extent of soft tissue infection, presence of coexisting illness, surgical risk, stability of implant and bacterial susceptibility to antibiotics ( , ). however, these algorithms do not specifically address pjis associated with zoonotic pathogens. our patient underwent irrigation and debridement because there was no prosthetic material present at the time of infection. several authors of previous case reports have advocated for the use of prophylactic antibiotics in all individuals with a prosthetic joint who have sustained an animal bite, especially if other risk factors are present (such as rheumatoid arthritis or corticosteroid use). proposed antibiotics include penicillin ( ), oxacillin ( ), amoxicillin ( ), cefuroxime ( ) and amoxicillin/clavulanate ( ). recent guidelines have recommended antibiotic prophylaxis in all individuals with bite wounds at high risk for developing infection, such as those with sig- nificant immunocompromise (diabetes, steroid use, hiv, peripheral vascular disease), advanced liver disease, edema of the affected area and wounds involving deeper structures ( ). to our knowledge, the use of prophylactic antibiotics following an animal bite or scratch in individuals with a prosthetic joint has not been directly addressed. conclusion the present report represents the sixth documented case of p multo- cida non-native joint infection following a dog lick, and the first to occur in the midst of a two-stage revision. the accompanying litera- ture review of pjis caused by p multocida is the most comprehensive performed to date and includes all cases reported in the literature. while pjis due to p multocida classically occur following an animal bite or scratch, our review highlights the fact that penetrating trauma is not a prerequisite for infection. it is important for clin- icians to ask about animal exposure when evaluating a patient with a pji, particularly if the infection has occurred remote from the sur- gery, so that the appropriate empirical therapy can be chosen. our literature review also documented other risk factors that may increase the risk for p multocida pji following an animal-induced wound, including rheumatoid arthritis, corticosteroids, other immunosuppressive therapy and malignancy. in light of the case presented here, it is reasonable to counsel patients about the risk for zoonotic infections of surgical wounds and the steps that can be taken to potentially reduce this risk, such as maintaining good hand hygiene after pet contact, keeping wounds covered, avoiding direct pet contact with any unhealed, uncovered or open wounds, and reporting all significant animal-induced wounds to a physician. disclosures: the authors have no financial disclosures or conflicts of interest to declare. table – continued literature review of documented pasteurella multocida prosthetic joint infections author (reference), year age, years/ sex risk factors site time from prosthesis animal contact time to symptoms surgical intervention antibiotic treatment* outcome miranda et al ( ), /m nr tka year cat scratch/ bite days joint lavage, debridement, replacement of spacer amoxicillin/clavulanate + levofloxacin × weeks cure romanò et al ( ), /f ra tka years cat scratch months debridement and replacement of tibial tray amoxicillin/clavulanate × days + ciprofloxacin × weeks cure subramanian et al ( ), /m nr tka days probable dog lick – debridement, joint lavage and replacement of liner cefuroxime × weeks, doxycycline × weeks cure ferguson et al ( ), /f nr tka weeks dog lick – debridement, joint lavage and replacement of insert linezolid × weeks + ciprofloxacin × weeks cure vélez et al ( ), /m nr tka months cat bite days debridement, and replacement of spacer ampicillin/sulbactam × weeks, amoxicillin/clavulanate × weeks cure alsaffar and gaur ( ), /f nr tha years cat bite days joint lavage amoxicillin + ciprofloxacin × weeks cure *antibiotics separated by commas denote subsequent change in antibiotics, antibiotics separated by plus sign denote concurrent use. aps antiphospholipid antibody syndrome; b/l bilateral; cs corticosteroids; f female; m male; mtx methotrexate; nr not reported; ra rheumatoid arthritis; sle systemic lupus erythematosus; tha total hip arthroplasty; tka total knee arthroplasty lam et al can j infect dis med microbiol vol no july/august references . tande aj, patel r. prosthetic joint infection. clin microbiol rev ; : - . . elliott dr, wilson m, buckley cmf, spratt da. cultivable oral microbiota of domestic dogs. j clin microbiol ; : - . . freshwater a. why your housecat’s trite little bite could cause you quite a fright: a study of domestic felines on the occurrence and antibiotic susceptibility of pasteurella multocida. zoonoses public 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health-related goals, barriers, and strengths as part of planning a program to reduce cardiovascular risk. methods: in a mixed methods study, we used written surveys and focus groups as part of planning an intervention specifically designed to meet the needs of lower income individuals. based on prior research, we used self- determination theory (sdt) and its core constructs of autonomy, competence, and relatedness as the theoretical framework for analysis. the study collected information on the perspectives of low-income urban residents on their risks of cardiovascular disease, their barriers to and supports for addressing health needs, and how they addressed barriers and utilized supports. focus group transcripts were analyzed using standard qualitative methods including paired coding and development of themes from identified codes. results: participants had health goals that aligned with accepted approaches to reducing their cardiovascular risks, however they lacked the resources to reach those goals. we found a lack of support for the three sdt core constructs. the barriers that participants reported suggested that these basic psychological needs were often thwarted by their environments. conclusions: substantial disparities in both access to health-promoting resources and in support for autonomy, competence, and relatedness must be addressed in order to design an effective intervention for a low-income population at cardiac risk. keywords: focus groups, health disparities, cardiovascular disease, self-determination theory, program planning, peer support © the author(s). open access this article is licensed under a creative commons attribution . international license, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the creative commons licence, and indicate if changes were made. the images or other third party material in this article are included in the article's creative commons licence, unless indicated otherwise in a credit line to the material. if material is not included in the article's creative commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. to view a copy of this licence, visit http://creativecommons.org/licenses/by/ . /. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated in a credit line to the data. * correspondence: rachel.kirzner@stockton.edu school of social and behavioral sciences, stockton university, vera king farris drive, galloway, nj , usa full list of author information is available at the end of the article kirzner et al. bmc public health ( ) : https://doi.org/ . /s - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf http://orcid.org/ - - - http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / mailto:rachel.kirzner@stockton.edu background significant disparities persist in cardiovascular disease (cvd) mortality rates by race, ethnicity, socioeconomic status, and geographic location [ ]. for instance, even in this decade, individuals who are african american have a % higher age-adjusted death rate from cvd than the general population [ ], and persons aged to in the lowest quartile of socioeconomic status are twice as likely to die from myocardial infarction and coronary heart disease compared to those in the higher quartiles. these disparities mirror the significant disparities in the prevalence of seven key risk factors: smoking, physical inactivity, obesity, poor diet, hypertension, high choles- terol, and abnormal fasting glucose [ ]. in addition, dis- parities in stressors including adverse childhood experiences (aces) contribute to cardiovascular risk by multiple pathways [ ]. access to healthy foods and exercise, two powerful preventative factors for cvd, can be an insurmountable barrier for the most vulnerable populations. low-income neighborhoods may lack supermarkets, a situation de- scribed as a food desert [ – ]. gentrification of neigh- borhoods has resulted in food mirages: local markets that provide wide selections of fresh produce and other healthful foods, but at prices inaccessible to low-income consumers [ ]. similar to food deserts, there is a lack of access to exercise in areas of poverty, which has been termed exercise deserts [ ]. in addition to poor access to healthy foods and exercise, individuals living in poverty are exposed to disproportionate environmental toxicities. multiple studies connect the stress of living in low- income, under-resourced neighborhoods to chronic dis- eases [ , ]. elevated exposure to stressors begins in childhood, and aces are more common in low-income neighborhoods [ ]. increased frequency of aces corre- lates with incidence of cardiovascular disease [ ]. widely available and sustainably funded cardiac pre- vention programs, such as traditional cardiac rehabilita- tion and the ornish reversal program, are very effective at reducing recurrent cardiac events [ ]. however, they may only serve to increase the disparities discussed above. the lifestyle changes they promote require those same diet and exercise resources that are inaccessible to a low-income urban population. furthermore, the pro- viders of these programs may not be knowledgeable about the goals and lived experiences of these popula- tions. this knowledge is essential in planning a program that will reduce disparities faced by this population. we will describe how self-determination theory (sdt) can further illuminate the impact of these disparities as well as many providers’ limited understanding of these populations. our study used focus groups and written surveys to explore the cardiovascular health-related goals, barriers, and strengths of a low-income population of urban resi- dents. we sought this information as part of planning a peer-support program to address cardiovascular risk. focus group research is based on valuing participant in- put; therefore it is not surprising that focus group stud- ies have used sdt as a theoretical framework both in designing the studies and analyzing the results. because sdt identifies the three basic needs (au- tonomy, competence, and relatedness) that foster hu- man motivation (likelihood of engaging in behaviors), it is inherently relevant to health behaviors [ ]. in the context of health care, competence means posses- sing resources and knowledge, and feeling capable of taking the steps required to maintain one’s health. autonomy refers to the choice to pursue specific health goals rather than feeling pressured to follow a doctor’s orders or by an already distrusted medical establishment [ ]. relatedness in the healthcare en- vironment means feeling supported by health care professionals and by peers. when these three basic needs of competence, autonomy, and relatedness are met, people feel intrinsic motivation, become engaged in their own health care, and as a result have positive health outcomes [ ]. this theory posits that motivation is powerfully influ- enced by environmental factors that support or under- mine sdt needs, rather than being inherent in individuals. for example, a person’s home life, neighbor- hood resources, and access to health care all have the potential to support or block a person from feeling moti- vated to take the actions which will lead to positive health outcomes. therefore, sdt may be especially rele- vant to populations with scarce resources. when re- sources are scarce, people are less able to get their needs of competence, autonomy, and relatedness met [ ]. providers with a limited understanding of the prefer- ences and resources of an underserved diverse popula- tion may further undermine these three preconditions for motivation. this theory potentially provides compel- ling insight into why adherence to provider health be- havior recommendations is thwarted in this population, and into how to design a peer support program that truly supports behavior change. using sdt as a framework, focus groups have been utilized to study health behaviors in low-income popula- tions including low-income pregnant women who are overweight or obese [ ], older adults of differing eco- nomic status with barriers to increasing physical activity [ ], and low-income latinx adults with type ii dia- betes [ ]. this research consistently finds that sdt is useful for evaluating data on underserved populations. these studies address health-related cardiovascular risks and behaviors such as physical activity and diet similar to those included in our study. kirzner et al. bmc public health ( ) : page of though focus groups have studied health behaviors in low-income populations, to our knowledge there are no recent studies involving focus groups made up of low- income urban residents, with content that includes all three major determinants of cardiovascular outcomes (nutrition, physical activity, and stress), and the unique challenges that urban populations face. further, while self-determination theory has been used as a concep- tual framework for some focus group studies, it has not been used for focus groups involving our specific popu- lation and types of cardiovascular risk. our study con- tributes to the existing body of knowledge by using focus groups to explore perceptions of a range of cardio- vascular risk-related barriers, strengths, supports, and preferences among a low-income urban population, with sdt as an organizing framework for the findings. methods recruitment and data collection this is a mixed methods study using primarily qualita- tive data, with some quantitative data included. the study was approved by the stockton university and gei- singer/atlanticare institutional review boards (irb) and took place in atlantic city, new jersey. this northeast- ern u.s. city has a tourism and casino-based economy which was economically devastated by the closing of multiple casinos in the last two decades [ ]. this down- turn is reflected in a individual poverty rate of . %. the overwhelming majority of residents lack a college degree ( . %); . % lack health insurance; . % identify as white/non latinx; % identify as black or african american/non latinx; and . % iden- tify as latinx [ ]. study participants were recruited at the atlanticare healthplex, a community-based safety net health facility, which includes a federally qualified health center and a smaller community family medicine center providing charity care. in , . % of patients were at or below % of the federal poverty line, including . % of total patients living in poverty. we used a convenience sample recruited using flyers and posters left in common areas and individual clinics and referrals by medical staff at the facility. recruitment criteria required participants to be aged – , current patients at the study site, and have one or more self- reported cardiac risk factors (diabetes mellitus, hyperten- sion, coronary artery disease, obesity/overweight). three focus groups were conducted in spring at the healthplex. focus group sizes were eight, , and , for a total of participants. this number of partici- pants in each group is within the typical range for focus groups [ ]. the number of focus groups was based on available staffing and funds; however the use of two to four groups is fairly common in health research [ – ]. each group lasted – min, depending on the length of participant comments. quantitative data was collected by written survey on-site prior to each focus group, followed by semi-structured focus group questions. par- ticipants received a $ supermarket gift card as an in- centive for taking part in the study. the written survey, developed for this study by a multidisciplinary program planning group, collected sev- eral types of information. the first set of questions fo- cused on demographics and personal characteristics such as self-ratings of finances and established cardiac risk factors. the second set of questions asked about barriers to health behaviors. the third set included ques- tions about program preferences and resources that could impact programming, such as access to smart- phones and cooking facilities. the survey items are pre- sented in additional file . some of the program planning and barriers questions (questions , , and ) were adapted from an atlantic city needs assess- ment survey previously developed by the atlanticare foundation, a charity whose mission includes supporting the wellness of the atlantic county community. ques- tion was designed by one of the authors (miseran- dino) to elicit sdt needs that might be met by the planned program. the focus groups were conducted by professional fa- cilitators employed by the health care system. members of the research team were present at each focus group. we used semi-structured interview guides including questions on health care goals, supports, barriers, and suggestions for our future program. focus groups were digitally recorded and then professionally transcribed. the focus group questions, developed for this study by the multidisciplinary planning group referenced earlier, are presented in additional file . analysis quantitative survey data was analyzed using sas . software, focusing on descriptive statistics. qualitative data was analyzed using nvivo qualitative analysis software. analysis was conducted in two stages. for the first stage, we developed themes without consideration of sdt concepts. in this stage, we used open coding for the first focus group and then discussed and developed a code book to be used for the second and third focus groups. additional codes were added to the codebook if new topics or themes were identified in the later groups. paired coding was used for each focus group transcript to ensure rigor. codes were then discussed and adjusted until agreement of over % was reached for each code. after coding comparison, codes were discussed and combined into themes. the second stage of qualitative analysis aligned the themes with sdt concepts, which became the metathemes for the analysis. this two-stage kirzner et al. bmc public health ( ) : page of approach allowed us to first capture a broad range of meanings within focus group data, and then use the identified themes to explore how sdt constructs oper- ated within our low-income urban population. results quantitative results as described earlier, a written survey was administered immediately prior to each focus group. surveys included questions on demographics, program planning, and bar- riers and resources. demographics sample demographics and characteristics are presented in table . the study sample size was across the three focus groups. participants were . % female with the remainder male. an “other” category was offered but no participants selected it. mean age was . , with a range of to . during the focus groups it became clear that a small number of participants came in pairs as either couples, friends, or relatives, however we did not ask about this in the surveys so cannot state the fre- quency. the largest racial group was african american, with . % of participants identifying in this category. the next largest group was white ( . %), followed by latinx ( . %), other ( . %), and then asian ( . %). participants were asked to identify as many categories as applied to them, but none chose more than one race/ ethnicity. the majority of participants ( . %) reported incomes of less than $ per month. almost % of participants did not select an income level, so it is diffi- cult to ascertain the true percentages for this question. about % ( . %) of respondents were employed, and . % received some form of disability benefits, specified as supplemental security income (ssi) or so- cial security disability insurance (ssdi). none received temporary assistance for needy families (tanf), but . % received general assistance (ga) for single adults (new jersey is one of the few remaining states to offer this very limited public benefit for adults without chil- dren). about % ( . %) of respondents received some amount of financial support from family or friends. three quarters received supplemental nutrition assist- ance program (snap) benefits. all but one of the partic- ipants had health insurance. the majority of respondents rated their health as poor ( . %) or fair ( . %). the remainder rated their health as good ( . %), very good ( . %), or excel- lent ( . %). the most frequent health conditions identi- fied by the participants included hypertension ( . %), obesity ( . %), high cholesterol ( . %), and diabetes mellitus ( . %). the largest group of respondents ( . %) identified only one health problem, followed by . % identifying two health problems, and . % identifying three or more. program planning survey questions participants were asked about what health interventions they would like to see in their communities. more than half endorsed options including exercise activities ( . %), cooking classes or healthy prepared meals ( . %), and community gardens or farmers markets ( . %). regarding specific program activities they would be interested in, more than half endorsed healthy meals or food baskets ( . %), learning to relax in stressful situations ( . %), and cooking demonstra- tions ( . %). when asked what program features would be most important in supporting their personal health goals, participants identified “having someone who knows what i’m going through” ( . %), “people to share the experience with” ( . %), “a support net- work so i don’t feel isolated/alone” ( . %), and “people who won’t judge me” ( . %). table presents the full list of program preferences. resources and barriers survey questions participants often lacked basic resources that are typic- ally needed as part of cardiac prevention programs. table presents the results for participant resources and barriers. twenty-one percent lacked an oven and the same percentage lacked a stove for cooking. a third did not have a nearby location where they could buy healthy food. in spite of lacking resources, the majority of respondents ( . %) stated that they prepared at least one meal a day at home. just . % of respon- dents had smartphones. twelve percent did not have a phone of any type. the majority of respondents stated that they have a safe place to walk or exercise ( . %), but . % said they did not, and . % were unsure or declined to answer. the biggest barriers to healthy choices cited by participants were transportation ( . %), cost ( . %), stress ( . %), access to healthy food ( . %), and access to exercise equipment or a place to exercise ( . %). responses to questions on health care providers (items – ) are not presented. answers to these questions were inconsistent and it ap- pears that all participants may not have understood them in the same way. qualitative results we present our qualitative results organized by related sdt constructs, with brief comments linking each theme to its related construct. we will explore these connections more fully in the discussion section. kirzner et al. bmc public health ( ) : page of autonomy we asked participants about their health-related goals, and occasionally goals were shared as part of responses to other questions. in the discussion section, we will explore how goals can either support or undermine autonomy depending whether they are self-selected (au- tonomy-supporting) or identified by others (controlled). table participant characteristics number percentage mean (sd) age . ( . ) gender male . female . race/ethnicitya black . white . latinx . asian . other . income sourcea employment/job . ssi/ssdi . tanf . ga . family . snap yes . no . health insurance yes . no . monthly income - $ . . $ . - $ . . $ . - $ . . $ . - $ . . $ –$ . more than $ . . not sure/declined/missing . overall health poor . fair . good . very good . excellent . health problems diabetes . hypertension . heart disease . obesity . high cholesterol . other . number of health problems table participant characteristics (continued) number percentage mean (sd) . . or more . aparticipants could select more than one option table program planning frequency percentage health interventions you would like in your community: walking programs/exercise activities . cooking classes/healthy prepared meals . community gardens/farmer’s markets . incentives/coupons . other . most important in a program, to meet health goals: someone who knows what i’m going through . people to share the experience with . support network so i don’t feel isolated/ alone . people who won’t judge me . place where i can be myself and “feel normal” . place to exercise . quiet space to relax . role models i can look up to . as part of this program, i would be interested in: getting healthy meals/baskets of nutritious foods . learning ways to relax in stressful situations . cooking demonstrations . exercise instruction/group class . yoga/gentle yoga class . answers to my questions about a healthy diet . information on ways to exercise on a budget . tours of local food stores with advice on healthy diet . not sure . kirzner et al. bmc public health ( ) : page of participants readily shared goals for positive change. the most prevalent themes were diet and weight loss. among those who wanted to change their diet, many stated that they wanted to eat more fruits and vegeta- bles. others described foods they needed to eliminate from their diets. one participant illustrated both of these themes: “i need to stop eating such fried foods, everything is like fried. i need to start eating more fruits and veg- etables. like i love spinach and eggs, i can eat that almost every other day, i love ‘em. i need to stop frying and stuff all the time with the oil and it’s greasy, it's no good.” others wanted to cook more, or gain knowledge about how to prepare and enjoy healthy foods. autonomy was also evident in participants’ range of suggestions for activities they would like in a group intervention. participants were eager to identify the means by which they would like to attain their goals as part of the planned program. for physical activity, yoga was the most common suggestion. others asked for swimming, tai chi, and group walks. for diet, the most common responses centered on healthy cooking class, nutrition information, recipes, and potluck meals. there were many suggestions for stress reduc- tion, including meditation, music, reading, pet ther- apy, and art therapy. some specifically mentioned peer support: “i think support groups like talking like he said, just support.” competence barriers towards meeting health-related goals exter- nal barriers can undermine competence, because indi- viduals are unable to complete identified tasks. we asked specifically about barriers that impacted diet and physical activity. for diet, by far the most frequently mentioned barrier was the cost of healthy food. the next most common factor was distance to vendors that sold healthy food. these issues frequently overlapped, with the nearby options having either no healthy food, or healthy food that was too expensive for the participants to purchase. as one focus group member stated: “if there was a market that just had fruits and vege- tables that was reasonable that would be good. but if i could say its variety is not there and the cost is too high and it's like i go to [name of supermarket] and get depressed. oh god it’s like same thing, it’s like i want something different, you know what i mean, and it's not there.” the next most frequent barrier to eating healthy foods raised by participants was preference, habit, or history. participants said they just did not like the taste of foods that were recommended to them. they often looked at it as a chore to learn to like these foods: “i don’t like salad but i know i have to learn how to-- i have to learn how to eat [it].” others described growing up eating un- healthy foods. while family was often a support, several participants noted family responsibilities as making it more difficult to stick with a healthy diet. for example, one stated: “it’s just hard-it’s hard sticking to that diet. you know, you can get on a roll but you break, holidays come and, you know, the kids come and you gotta...i gotta cook the fries...” only a few participants mentioned lack of knowledge as a barrier to eating better, although several said they would welcome cooking and nutrition information as part of a potential group activity. medical providers were viewed as a source of knowledge, but were not described as taking participants’ preferences into account. while the provision of knowledge can support competence, the lack of respect for preferences undermines autonomy (as part of goal selection) and relatedness (to medical providers). table resources and barriers number percentage appliances owned microwave . stove . oven . hot plate . none . have a phone, any type . have a smartphone . safe place to exercise . place to buy healthy food . prep one meal daily . barriers to making healthy lifestyle choices getting there/transportation . cost of maintaining a healthy lifestyle . too much stress about housing/family/ other problems . access to healthy food . access to equipment or place to exercise . safety or security concerns . other barrier . not enough time/too busy . kirzner et al. bmc public health ( ) : page of the most frequent comments about physical activity barriers centered on participants’ health limitations. par- ticipants described a number of health conditions that typically impact physical activity, including orthopedic injuries, chronic pain, respiratory problems, and obesity. one participant shared: “i cannot twist, i cannot bend, i cannot stoop down. so, but i ordered a tai chi complete program and whatever i can do because, you know, tai chi is very slooow…i’m excited waiting for it because i used to do yoga but now i'm going for the tai chi. and i would invite any one of you who wants to come and join me, you can come.” after health limitations, the most commonly shared bar- riers were similar to those for improving diet: cost and access. places to exercise were either too expensive or too far away. transportation overlapped with access, be- cause participants either did not have cars or could not afford transit fare. weather also presented a barrier for those in this group who had no place to exercise indoors. one participant whose main exercise was walking outdoors stated: “you can’t get by, you know. especially when you have a walker, you know, like, and then, all the snow is so piled up all to-- all over. i mean there’s like… up, you know. you can’t, there’s no way.” for these participants, cost and access to indoor exercise locations combined with lack of other re- sources to make exercise much more difficult. several participants mentioned depression as a barrier, and one participant stated that stress lies beneath all of the barriers they experienced: “see, the real heart of the matter concerning these topics likely, number one, can be summed up, just under stress.” successful change and coping strategies some partici- pants shared areas of successful change - reflecting com- petence - for example losing weight, increasing physical activity, or incorporating nutritious foods into their di- ets. participants were resourceful in identifying many in- dividual coping strategies, in particular relating to reducing stress. these included activities such as vent- ing, reading, doing puzzles, watching sports, and going outdoors. some participants stated that caring for others, or even a pet, could be a source of strength for them. participants identified a number of sources of support, especially friends and family. for example: “yes, i go to my sister because i do get stressed and she's the calmer one, she calms me down. [laughter] she's like, ‘it's not that bad. it’s not that--.’ she's like, ‘breathe, take it easy.’ i'm stressed out and i call her and she gets me back down a level.” a number of participants found faith as a strong source of support in their lives. this took a range of forms, including praying, reading the bible, and at- tending a house of worship. one participant stated: “so i go to the bible a lot and i just read it and it calms me down with the things that i'm going through. i do, i just pray.” relatedness connections with others sdt holds that relatedness can powerfully enhance behavior change, and partici- pants frequently brought up connections with others during the focus groups. these others included family, friends, and medical professionals. behavior change was sometimes explicitly linked to relationships. for ex- ample, one participant spoke of learning how to cook in a more healthy way from a niece: “most black people don’t like to hear cooking collard greens and string beans and stuff without meat, but uh, my niece has taught me how to cook that and they are very tasty and now, i don’t want to cook ‘em with meat it’s uh, and it’s very nutritional and i have come from uh, pounds down to .” faith was both a coping skill and a source of relatedness. when asked about who they talk to about their health goals, one participant said:” well, i have church family. i’m involved in my church.” another spoke of god as someone they could rely on: “i lean-- i just lean on god.” isolation can be viewed as the lack of relatedness. a number of participants spoke of the lack of others in their lives, for example: “what i said sometimes when you don’t have nobody and you feel a lot lonely.” another participant shared: “surveys have said more se- niors die because of loneliness. i always wanted to do like a little party, get together. we dance, we sing, we -- but i don’t have anybody i’m new and i’m not from at- lantic city. i don’t have anybody here…”. relatedness within the focus groups during the focus groups themselves, connections appeared to be forming between group members. for example, they frequently asked for and gave each other advice. in addition, there were commonalities that emerged from the group. participants responded to each other with supportive comments that recognized their shared experiences. ex- amples include the struggles to maintain a good diet: “you don’t eat a lot of sweets and stuff? because i’m a diabetic myself so i know how it is.” and managing ex- tended family living together: “sounds like my house. got those grown folks in my house, children in my house, i got other people’s children.” participants kirzner et al. bmc public health ( ) : page of spontaneously connected with each other. one partici- pant illustrated this idea by saying “i think we all going through the same thing, sounds like me.” suggestions for group intervention almost all the par- ticipants endorsed the idea of a group intervention. they felt that peer support was important, and would help them reach the goals they had shared earlier in the focus group: “yeah well, if you want to join together as a goal to lose weight and support each other in the goals as part of maybe the exercise part, weigh-ins and the recipe of the week or whatever's a reason to come together, because it's so much easier to do with someone than it is to do, particularly if you live alone, than you do by yourself, you know.” some participants asked if they could sign up for the program on the spot. in their comments about a future intervention, participants connected their focus group experience to anticipation of a future program: “having groups like this, this is wonderful.” self-determination constructs summary table presents participant quotes that illustrate the sdt core constructs of autonomy, competence, and re- latedness. the ability to choose from a range of options that are personally appealing and attainable supports au- tonomy. several quotes suggest that when participants described strategies they had developed on their own, that aligned with their own needs and preferences, their statements were positive and change-oriented. in con- trast, their quotes about providers who counselled them on actions they “have to” take indicated challenges to adherence. although table groups statements accord- ing to individual sdt constructs, considerable overlap exists. for example, while the lack of variety in available foods undermines the autonomy to make individual choices, the lack of affordability undermines the compe- tence to buy healthy food at all. additionally, partici- pants described interactions with providers that thematically connected to not feeling listened to and recognized as individuals, which can undermine all three needs. discussion in this study, we aimed to learn the perceptions of health-related needs among low-income urban residents at risk of cardiac disease. we asked about goals, barriers, and sources of strength relating to cardiovascular risk. we additionally sought participant input as part of pro- gram planning for a group intervention. we used sdt as the analytic framework for our findings. autonomy and health-related goals goals can support or undermine autonomy depending on who generates them. participants’ primary health- related goals were overwhelmingly related to diet and nutrition. they were aware of the importance of these factors in addressing a significant burden of self- identified fair to poor health. despite the many day-to- day housing and food insecurity challenges known to exist at this income level, participants maintained a vi- sion of better health and health habits. their goals gen- erally aligned with well-accepted approaches to reducing cardiovascular risk. in some cases, participants were clearly sharing goals that were self-generated, for ex- ample the individual who was “excited” to start tai chi. other times, participants used wording such as “should” or “need to” reflecting goals that may have been inter- nalized from providers or others and are not necessarily autonomy supportive. when given the opportunity to suggest their own preferences for the means to meet their goals - supporting autonomy - participants were eager to do so. we argue that seeking out and incorpor- ating participant preferences should be an essential com- ponent of an autonomy supportive program, and will enhance goal completion. the goals that clients shared as clearly coming from medical providers often did not seem autonomy-supportive. taste, preference, and habit or history were important to participants in selecting healthy foods and increasing physical activity, yet partici- pant input indicated that their preferences were not be- ing considered in goal setting. participants faced challenges relating to their need for autonomy, the need to have input into goals, and activities that are personally meaningful. while participants’ goals were consistent with standard recommendations, they needed (due to barriers) and wanted (due to preferences) to design indi- vidual strategies to meet them. advice from healthcare providers seemed to be directive rather than collabora- tive. this finding aligns with research demonstrating that those in poverty more commonly experience direct- ive medical communications than those of higher socio- economic status and dominant groups [ ]. to support autonomy, and enhance goal attainment, low-income in- dividuals at cardiovascular risk should have a collabora- tive partnership with their healthcare provider to develop individualized goals that are personally mean- ingful and realistic for them. competence and barriers many of the barriers to healthy diet and exercise identi- fied by participants were directly related to cost. for many, healthy food was nearby but not affordable. this dilemma is captured in sullivan’s concept of food deserts (lack of supermarkets) versus food mirages (nearby, but unaffordable, markets) [ ]. for this group of low-income kirzner et al. bmc public health ( ) : page of individuals, problems relating to poverty provided the most powerful barriers to meeting their health goals. further, participants recognized that stress -- often cor- related with poverty -- was a significant barrier to car- diovascular health. the lack of resources described by our participants aligns with the sdt construct of competence, because the lack of money and accessible resources translates to a lack of tools to complete a desired task. for persons living in poverty, the sdt basic psychological need for table self-determination theory constructs construct undermines this construct (quotes) supports this construct (quotes) autonomy definition: the need to choose and pursue goals that are personally meaningful, rather than being given directive advice “the doctor said, ‘well you have to eat lettuce, tomato,’ whatever they got they call this stuff eating. but i want to be able to do that. the doctor say, ‘do that.’ i want to do it. but then if i start, i start doing it, lettuce, tomato, all this type of stuff and eating this here. i’m not satisfied.” “then i got to understand that the doctor tells me, ‘you have to slow down on that greasy food.’ i’ve been doing this all my-- eating greasy food all my life.” “i’m not supposed to have it, see. but i grew up on salt. like, i like bacon and stuff like that. i try to calm down with it but i’m going in the refrigerator and getting it.” “i’ve learnt to-- i’m learning that no, i love rice but then i prepare shredded vegetables with a lick of rice just to, ya know, trick myself. so i have a lick of rice but it’s more vegetables. it’s nice. i’ve done that days now. three days i have been doing that and i’m going to continue, and i do my own recipes, just invent.” “but also, made a deal with myself actually to cook for myself, because i live alone, and i really, even if i only take day a week to cook some meals.” “..they have a farmer market here but i went there last summer and that, the prices was sky high. i went over to [name of supermarket], there’s was a little better but it still wasn’t enough variety in there for what i was looking for. so then that makes me go back to the sweets getting the cookies and the candies.” competence definition: the ability to complete tasks successfully “i know good food with the right way to eat, it’s just a question of being too-- i don’t know, um, depressed or do whatever to get started with it all.” “i’m suffering from pretty severe chronic depression even with medication, so it’s really getting motivated to get up and get out.” “i can block out the negative. i’ve learned how to do that.” “when i get next to greens and plants and vegetables, i start feeling a little bit concerned and overwhelmed. i haven’t really figured out why.” “i once thought that i couldn’t really eat without some meat on my plate. but now, i find that i don’t even want meat.” relatedness definition: feeling connected to others; a sense of belonging “i know what good eating is, but i’ll tell you what, since i’ve been living alone, i would, if i don’t cook for friends and give the food away and keep some for myself, i don’t cook healthy.” “because it will motivate me more if i have somebody that’s, one or two persons, so you can, if you’re interested you can take my number, call me any day. yes.” “she walks the boards, so she grab me and say, ‘let’s walk.’” “living alone sometimes is stressful.” “... cause she likes to just stay home all day and stay in bed all day and watch - she’s just out of everything, but she has started because i told her, ya know, like, ‘start getting up, just walking around the block, talk to your next-door neighbor, go to—’ so now, she likes to go to walmart and watch the people she says.” “like they might give [name] one drug, give to her this drug and i say ‘i can’t take that’ but that’s what they order for everybody but i’m not everybody. my body don’t react well to this. or they say ‘your blood pressure should norm should be over ... i said it might be good according to the chart but it doesn’t make me feel good.” “because anything and everything that you eat you got to literally monitor and when you tell your doctor, they don’t want to hear nothing about it. now a person like me had to come here and tell ya’ll about that.” “a doctor that actually cares.” “listen and learn, listen and learn.” note. bolding added by authors for emphasis kirzner et al. bmc public health ( ) : page of competence is undermined because participants do not have the opportunity and resources to attain their goals. ingrained societal messages frame the inability to attain these goals as personal failures [ ], and our participants made statements that suggested they had internalized these assumptions when they indicated that they wanted to follow certain directives that they were unable to. therefore, the concrete barriers are compounded by the thwarting of the basic psychological needs, most notably competence, that make it difficult to take effective action. stress is a key barrier for those in poverty. illustrative of this is one participants’ statement that stress lies be- neath all of the barriers they experienced. stressors multiply under the constraints of poverty; they are caused by and cause poverty in an iterative fashion. the psychological need of competence is supported by set- ting attainable goals [ ]. expecting major changes in health behavior without recognizing the challenges caused by stress undermines competence. providing stress-reducing measures supports this need. partici- pants clearly believed peer support would empower them to address stress and move forward with positive change. relatedness social capital and social networks can be limited in low- income neighborhoods as compared to other neighbor- hoods [ ]. participant quotes highlight the impact of loneliness, often connected to physical limitations or de- pression, and shared the importance of relationships in meeting their health-related goals. the focus groups themselves began to turn into de facto support groups, with participants asking for and giving each other advice, and providing each other with emotional support. partic- ipants enthusiastically endorsed the idea of a peer group intervention. beyond the peer support built into a group interven- tion, relatedness needs to be taken into account in group content. for example, our participants shared that fam- ilies could be instrumental in meeting health goals, in- cluding providing recipes and encouraging physical activity. however, they also sometimes presented chal- lenges to making positive changes, as in when children have strong preferences for unhealthy foods. in some cases, advice from peers or family appeared to generate enthusiasm in a way that advice from medical practi- tioners did not. participant quotes about providers expressed percep- tions of not being seen as individuals and of not being listened to, and underscored the importance of being cared for by their providers. the lack of individualized care undermines relatedness, and therefore undermines the motivation for making and sustaining the health- related behavioral changes that these participants know how to make and want to make. both individual health care providers and group facilitators as well need to form supportive relationships with their clients or pa- tients, and consider and support outside relationships when designing interventions, goals, and treatments. implications for program planning the use of focus groups allows effective identification of the concrete barriers impacting specific populations. additionally, it supports sdt needs of autonomy, com- petence, and relatedness by valuing participant input and respecting their choices, thus empowering partici- pants to overcome barriers with creative solutions as a team. participants suggested activities that would be at- tainable with their physical limitations, habits, and cul- tural preferences. participants often understand these better than practitioners do and can be valuable re- sources and supports for each other. they embraced group activities that align with research-based ap- proaches e.g. yoga for stress reduction [ ], peer support [ ], and information-sharing about better nutrition and exercise [ ]. participants’ comments demonstrated a richness of suggestions and an enthusiasm about coming together and supporting each other to explore those suggestions. the activities listed above were prioritized when we designed our peer support intervention, and other lower-rated activities such as shopping tours were not. in addition, recognizing that autonomy was important to participants, we continued to build flexibility into our curriculum which spoke to the preferences of each indi- vidual group. we trained a portion of our team in mo- tivational interviewing techniques including celebrating small gains to support competence. we tailored our pro- gram to ensure that needed resources would be available to meet the goals participants identified. we measured perceived competence using established sdt scales as part of pre- and posttests to ensure we were supporting this need. limitations and future research our study provides much information about the needs and wishes of low-income urban residents at risk of heart disease. in some cases, our qualitative data sug- gested additional questions that would have clarified the quantitative survey. the qualitative questions elicited a much more substantial constellation of interrelated bar- riers than our quantitative data, which targeted a limited number of specific barriers. follow-up quantitative re- search could incorporate the qualitative findings to en- hance survey research. it is possible that the order of our data collection - individual surveys prior to focus group questions - may have impacted the input given kirzner et al. bmc public health ( ) : page of during the focus groups. we believe that obtaining indi- vidual responses prior to group responses allowed us to obtain each participants’ preliminary perspectives prior to the group discussions and possible influence. how- ever, conducting a focus group without first implement- ing the survey would help evaluate whether the survey steered participants toward specific responses. our analysis found that sdt constructs are useful in framing the perspectives of participants, however we did not include focus group questions that explicitly asked about sdt core components. future research that incor- porates questions more directly focused on sdt would add to knowledge of how these ideas can be incorpo- rated in program planning. ideas raised by our partici- pants could provide direction for future research on sdt. for example, using statements by focus group par- ticipants to train medical residents in sdt constructs could potentially equip residents in better supporting autonomy, competence, and relatedness in patients. an evaluation of such a program could be a fruitful applica- tion of the ideas raised by our participants. our focus group data was used in designing a cardiac prevention program which is in progress. results from this research, which specifically asks participants about perceived com- petence pre and post intervention, will shed light on the effectiveness of a program design based on sdt. conclusions this focus group research underscores the need for assessing concrete barriers, and sdt-related impacts of our communities’ lived experiences. this is key to plan- ning programs and policies that effectively combat car- diovascular health disparities. multiple concrete barriers prevent low-income populations from addressing cvd risk. our focus groups demonstrated how these barriers impacted our study population. at the same time, our participants’ responses indicated a lack of support of the three basic sdt needs of autonomy, competence, and relatedness. while sdt is frequently studied among non-poor populations, we argue that this framework may be even more important in supporting core psycho- logical needs in a low-income population. because the needs of autonomy, competence, and relatedness are supported or thwarted by the environment or context, poverty and sdt-related barriers are intertwined in a way that is difficult to separate. poverty-related concrete barriers prevent task completion, and these barriers also make it less likely for individuals to be supported in basic psychological needs. these two types of barriers combine to create disparities in cardiovascular wellness, leading to disability that in turn creates more barriers. prevention programs for low-income populations must address these concrete barriers in order to be successful. program staff must also be aware of both the challenges and strengths of low-income neighborhoods, in order to sensitively and effectively design and facilitate program components. at the same time, because persons living in poverty have environments that undermine autonomy, competence, and relatedness in medical settings, it is also essential to support these needs with health- promoting programs and policies that are mindful of sdt constructs. focus groups of low-income individuals are a way to clarify how these two approaches -- con- crete barrier removal and sdt basic needs support -- operate in a particular population. we must hear the voices of our low-income communities to understand their needs and goals for preserving cardiovascular health, both to inform our providers and to create effect- ive risk reduction programs. concrete barrier removal and sdt must be implemented in tandem in order to truly and equitably support attainment of health-related goals in a low-income population. supplementary information the online version contains supplementary material available at https://doi. org/ . /s - - - . additional file . participant survey questions. additional file . focus group interview guide. abbreviations aces: adverse childhood experiences; cvd: cardiovascular disease; ga: general assistance; irb: institutional review board; sdt: self- determination theory; snap: supplemental nutrition assistance program; ssdi: social security disability insurance; ssi: supplemental security income; tanf: temporary assistance for needy families acknowledgements we are grateful for financial support from the stockton university research and professional development fund, and resources and staffing provided by atlanticare health services and the atlanticare foundation. we would like to thank katie coburn and ashley molina for assistance with the focus groups and analysis. we are indebted to the focus group participants for generously sharing their perspectives with us. authors’ contributions rk and ir were co-principal investigators for the study. rk led study design. ir organized and implemented the focus groups. rk completed quantitative analysis and led the research team for coding and analysis of qualitative data. mp assisted with literature review and made substantial contributions to cod- ing and analysis of focus group transcripts. rk and ir wrote the majority of the manuscript. mm gave expert input on self-determination theory, assisted with organizing qualitative themes according to sdt constructs, and wrote the related manuscript sections. all authors assisted with editing the manu- script, and read and approved the final draft. funding stockton university research and professional development funds provided a grant for research assistants, corresponding author’s time for summer work, and qualitative analysis software. stockton had no role in study design, implementation, analysis, or write-up. availability of data and materials the datasets used and/or analyzed during the current study are not publicly available due to the qualitative nature of our project. personal narrative can be more easily associated with individuals. data may be made available from kirzner et al. bmc public health ( ) : page of https://doi.org/ . /s - - - https://doi.org/ . /s - - - the corresponding author on reasonable request, and approval by our institutional review boards. ethics approval and consent to participate approval for this study was obtained from the geisinger/atlanticare irb (reference # – ) and the stockton university irb (reference # . ). all participants provided written consent to participate in this study. consent for publication there are no images or videos as part of this publication. individual quotes have had any identifiable information removed. competing interests the authors declare that they have no competing interests. author details school of social and behavioral sciences, stockton university, vera king farris drive, galloway, nj , usa. atlanticare health services, atlantic ave, atlantic city, nj , usa. sexual assault program, avanzar, main street, 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supporting economic mobility; washington, dc: office of planning, research and evaluation, administration for children and families, u.s. department of health and human services; . p. . chong cs, tsunaka m, chan ep. effects of yoga on stress management in healthy adults: a systematic review. altern ther health med. ; ( ): . . child s, kaczynski at, moore s. meeting physical activity guidelines: the role of personal networks among residents of low-income communities. am j prev med. ; ( ): – . . rippe jm. lifestyle strategies for risk factor reduction, prevention, and treatment of cardiovascular disease. am j lifestyle med. ; ( ): – . publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. kirzner et al. bmc public health ( ) : page of https://www.census.gov/quickfacts/fact/table/nj,atlanticcitycitynewjersey/pst https://www.census.gov/quickfacts/fact/table/nj,atlanticcitycitynewjersey/pst 	abstract 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the relevant press contacts. question about collaboration find a list of contacts regarding collaboration here. 	 university of copenhagen nørregade københavn k 	 contact: 	 university of copenhagen ku@ku.dk 	 university of copenhagen 	management 	administration 	faculties 	departments 	research centres 	animal hospitals 	school of dentistry 	libraries 	museums contact 	map 	find an employee 	contact ucph services 	press and media service 	merchandise 	ucph apps 	it-support 	for suppliers for students and employees 	kunet job and career 	job portal 	alumni emergencies 	emergency response web 	cookies and privacy policy 	accessibility 	information security connect with ucph $ € £ ¥ social sciences review the use of facility dogs to bridge the justice gap for survivors of sexual offending elizabeth spruin ,*, katarina mozova , tammy dempster and rachel freeman department of psychology, canterbury christ church university, canterbury ct qu, uk; tammy.dempster@canterbury.ac.uk department of policing, canterbury christ church university, canterbury ct qu, uk; katarina.mozova@canterbury.ac.uk kent police, maidstone me bz, uk; rachel.freeman@kent.police.uk * correspondence: liz.spruin@canterbury.ac.uk received: may ; accepted: june ; published: june ���������� ������� abstract: the current study investigated the support that a facility dog can provide to survivors of sexual crimes when undergoing video-recorded police interviews. in total, survivors of sexual offences, who were undergoing a video-recorded interview, were provided with a facility dog for the interview process. for each case, data were collected via interviews, observations and surveys. using a multiple case study approach, qualitative data were analysed to identify patterns, with observational and survey data used to provide further support to these outcomes. a total of four main themes emerged from the data: ( ) a change in focus for the survivor, ( ) a difference in the survivors’ engagement, ( ) the dog as a comforter to keep the survivor calm and ( ) a positive environment. overall, the findings suggest that the facility dog provided a much needed and beneficial service to survivors, helping them feel calmer and more comfortable. the dog also provided survivors with a more positive environment, allowing them to focus on the interview and communicate more openly about their experiences. the current study, therefore, presents very positive findings relating to improving survivors’ perspectives of justice within the framework of kaleidoscopic justice, bridging their perceived justice gap. keywords: facility dogs; video-recorded interview; survivors of sexual offences; kaleidoscopic justice . introduction according to the latest data presented by the office for national statistics (office for national statistics ), in the uk, there were , sexual offences recorded by the police in for survivors over the age of ; and , incidents of sexual abuse and exploitation reported for children. whilst the prevalence of serious sexual offending seems to have been somewhat stable over the last few years, continuous calls for improving the journey of survivors have not yet been effectively answered, with less than one in five survivors over the age of ( %) ever reporting an offence to the police, a rate which is only a small improvement (from %) from almost a decade ago (office for national statistics ). the rate of reporting of child sexual offences is estimated even lower, at one in eight (children’s commissioner ). the reporting of sexual offences, therefore, remains to be among the lowest nationally. of those who do report to the police, approximately half do not proceed past the investigation stage due to insufficient evidence. whilst the reasons for attrition rates vary and it is not clear how many cases fail due to the survivor not wanting to give evidence, statistics suggest that in % of cases, where the suspect is identified, the survivor does not support taking action (office for national statistics ). through rape attrition studies specifically, we also know that survivor withdrawal accounts for a large soc. sci. , , ; doi: . /socsci www.mdpi.com/journal/socsci http://www.mdpi.com/journal/socsci http://www.mdpi.com http://dx.doi.org/ . /socsci http://www.mdpi.com/journal/socsci https://www.mdpi.com/ - / / / ?type=check_update&version= soc. sci. , , of proportion of the attrition problem (e.g., hester ). the police-survivor relationship also plays a key part, and positive experiences, through providing comfort and support to the survivor, were even shown to increase the likelihood of a survivor providing a video-recorded statement by four and a half times (hohl and stanko ). among others, the importance of addressing survivor well-being is vital, as the trauma they experience through the offence can be further exacerbated as a result of the investigation process (brooks and burman ; burman ; maier ), resulting in survivors becoming too distressed to engage with the investigation (office for national statistics ). recently, mcglynn and westmarland ( ) coined the term ‘kaleidoscopic justice’ to explain the justice gap for survivors of sexual offending. in their research, it became clear that survivor perceptions of justice relate not only to conviction, but also wider processes which are shifting in importance and need to be better understood. survivor well-being was highlighted as one such key process. the aim of the current study is, therefore, to provide the first in-depth evaluation of a facility dog service, in which the principle scope is to provide the much-needed emotional support to survivors of sexual offences. to do so, a qualitative research approach is utilized in order to holistically explore this nuanced form of support, specifically provided during the stage of having to provide evidence relating to the offence, in line with the policing vision (national police chiefs’ council ) relating to improving policies for victims. . . the survivor journey a more realistic figure of sexual offending emerges through the crime survey for england and wales (csew) which points to around . million female, , male and , child survivors (office for national statistics ). these estimates highlight the significance of improving the criminal justice journey for survivors, where evidence provided by survivors is crucial, yet their perceptions of the system tend to be worrying (svedin and back ). this is likely, in part, due to the barriers that survivors face in not only bringing their case forward to authorities, but also seeing a successful outcome (antaki et al. ). for over years, research has consistently found that compared to other offences, sexual offence cases are less likely to be reported, to progress to prosecution, and to lead to a conviction (e.g., grace et al. ; gregory and lees ; hohl and stanko ; kelly et al. ; wright ). while attempts have been made over the years to shift police practices in regards to the treatment and recording of sexual offending, these changes have done very little to reduce attrition rates (hohl and stanko ; lea et al. ). in more recent years, however, the government has concerted their efforts on the criminal justice approach to dealing with sexual offences, noting the need for a more ‘victim-focused’ strategy to ensure that their needs are put first and their well-being is protected (hmic/hmcpsi ). subsequently, key provisions have been introduced across the criminal justice system (cjs) to help improve the treatment and outcomes of sexual assault and rape survivors. this included introducing new policing roles and teams, such as the sexual offences investigative trained officers (soitos) (mcmillan ; westmarland and ganjoli ) or dedicated support services, including rape crisis centres (rccs) and sexual assault referral centres (sarcs), where medical and psychological care is the primary focus. specialised advocacy services were also created; for example, independent sexual violence advisers (isvas) assist victims in their interactions with the criminal justice system, health and other agencies (brooks and burman ). further, special measures were introduced under the youth justice and criminal evidence act ( ) which provide survivors of sexual offences the opportunity to have an enhanced level of support when providing evidence, thus aiming to make the process less daunting for them, while also improving the quality of evidence (hamlyn et al. a, b). of particular note to this study is the provision of a ‘video-recorded interview’ under section of the act, enabling survivors to give evidence out of court, sparing them the stress of testifying in person (baverstock ). soc. sci. , , of . . the video-recorded interview the provision of giving evidence via a pre-recorded video interview was aimed at decreasing the possibility of secondary victimisation, as giving evidence in court was seen among the most daunting elements of the whole process (mcewan ), not benefitting victims or the interest of justice (rape crisis network ). the reasoning behind utilising video-recorded interviews and the achieving best evidence (abe) approach to interviews (hill and davies ) relates to stress having a negative impact on a victim’s ability to accurately recall evidence (deffenbacher et al. ). the video-recorded interview is at times informally referred to as an abe interview due to the interviewing technique utilised. it has been shown that these procedures not only reduce stress and the risk of re-traumatisation, but also help in the recall of evidence (baverstock ). konradi ( ) further added that video-recorded evidence may enhance the quality of information because many victims report that in the courtroom, they often concentrate on controlling their emotions, rather than focusing on their testimony. research supports these notions in that the vast majority ( %) of victims who have given video-recorded evidence in chief have found it helpful. survivors of sexual offences noted particularly positive reactions, with % of them stating that without it, they would not have been willing or able to give evidence (hamlyn et al. a). legal experts further argue that courtrooms are often too intimidating for many victims (mulcahy ) and the notion that vulnerable victims should publicly provide oral evidence is inhumane and unjustified, as it can be particularly distressing for them (mcewan ). many advocates, therefore, contend that video-recorded evidence should be standard practice for vulnerable victims (including victims of sexual crimes) (maguire et al. ). . . what about the perceived justice? while special measures have shown to improve the overall experiences and satisfaction of vulnerable victims, with video-recorded evidence considered one of the most highly regarded and necessary measures (home office ), vulnerable victims still seem to be significantly less satisfied compared to other victims (home office ). despite the available guidelines, police officers themselves question their real-life applicability as relating to evidence obtained, but also the relationship between survivors and officers (hanway and akehurst ). as such, despite the significant progress that has been made to improve the support provided to survivors of sexual crimes, research continues to highlight that their needs are still not being fully met (mcglynn et al. ), are ineffective in reducing attrition (brown ; jordan ), and survivors’ procedural justice needs are not understood (wemmers et al. ). recent government reports further echo these claims; for instance, the victims’ commissioner ( ) and the victims strategy (hm government ) highlighted the lack of support for survivors during the investigation stages and contended that more research needs to be carried out on support services for survivors of sexual crimes, taking into consideration the voice of those involved. the report further identified positive links between victim satisfaction and providing forms of emotional support that positively alter cognitive states. these concerns have been echoed internationally for years, with the / /eu directive (european parliament and council ) noting the importance of support and protection for victims of crime, placing specific focus on especially distressing crimes, such as those sexual in nature, for children and adults. the need for better services for victims is also highlighted in the policing vision (national police chiefs’ council ) which all police services across the country should work on achieving. based on the provisions briefly outlined above, it is clear that survivors of sexual offences need to be better prepared and supported in order to give their best evidence, as this would help increase the credibility (i.e., believability) of their case and the likelihood of it progressing forward within the cjs. providing such support could thus lead to more cases being prosecuted and more survivors potentially being spared from testifying in court, thereby reducing the trauma of secondary victimisation. research on conveying witness credibility has suggested that clear and fluent communication, along with maintaining a relaxed and confident state, are key factors (boccaccini and brodsky ). for many survivors of sexual crimes, however, these characteristics are often hard to convey due to the heightened soc. sci. , , of level of fear and anxiety that is exacerbated by their traumatic experiences (campbell and wasco ). this can subsequently impede a survivor’s concentration and memory, along with their physiological responses, all of which can impact their ability to appear credible (halligan et al. ). whilst it has been shown earlier that the existing provisions are somewhat effective, though in only a limited manner, finding new ways in improving survivor comfort and emotional support to mitigate the negative responses is much needed and currently lacking (e.g., victims’ commissioner ). overall, we are currently not yet allowing survivors of sexual crimes to be appropriately equipped to provide the police with a credible account and experience the justice they should receive; this is likely why we are not seeing much change on issues like attrition (mcglynn and westmarland ; wemmers et al. ). the problem with appropriately addressing this justice gap that survivors of sexual crimes are experiencing lies in the often narrow perception of what it means for a survivor to be satisfied with a case. research has been consistently finding that survivors do not only have the final outcome of a case in mind (e.g., conviction; brooks and burman ), but they also want their voice heard, they want dignity, validation and offender accountability. this is encompassed in a theoretical framework portrayed by mcglynn and westmarland ( ) who, through talking to survivors, present the idea of ‘kaleidoscopic justice’, imitating the functions of a toy which works in a way that it always shows an unpredictable and ever-changing pattern. whilst this framework rightly suggests that the experience of every survivor is different, what has been consistently shown, as seen earlier, is that survivor well-being and their treatment through the criminal justice process needs to be addressed. mcglynn and westmarland ( ) found that issues like dignity, giving survivors their voice, and caring for survivor well-being are perceived as some of the core patterns within the metaphorical kaleidoscope. as such, if we want to improve the criminal justice journey for these individuals, it is vital that these factors are considered, which is a core aim of the current study. improving the journey of survivors of sexual offending can only be achieved if a balance is found between the seemingly competing agendas of the police (e.g., obtain evidence) and survivors (e.g., in light of kaleidoscopic justice). whilst official guidance does not count survivor well-being as a top priority for the police (e.g., above discussed abe guidelines), it is still their core role to see a criminal investigation through to prosecution. hence, capturing views of processes by both survivors and police officers is crucial in creating strategies which can be utilised in real life. . . facility dogs as a form of quiet companionship and support one promising approach which can help to not only meet the emotional needs of survivors during the investigation process, but also assist them in remaining calm and comfortable during their video-recorded interview, is the use of facility dogs (also known as justice facility dogs). these dogs are specially trained to provide non-judgmental companionship to victims and witnesses, assisting them to remain calm so that they can cognitively process and coherently communicate their evidence (spruin et al. ). facility dogs are graduates of training schools accredited by assistance dogs international (adi), and while they have the same degree of training as service dogs (e.g., guide dogs, hearing dogs), unlike service dogs, who are trained to help one person with a disability, justice facility dogs work alongside legal professionals assisting many people. the dogs typically receive approximately two years of training, which involves learning how to quietly support those experiencing stress, and working with a number of people in high-stress environments, including court, police interviews, and medical examinations (spruin and mozova ). while the practice of using facility dogs is a novel and innovative idea in the uk, with currently only one adi-accredited dog working in the legal system with kent police, the practice has been widely successful across the united states ( dogs in states) and canada ( dogs in provinces) for over years (courthouse dogs foundation ). the general therapeutic benefits that dogs provide humans have been well-researched over the years (e.g., barker et al. ; damon and may ; majić et al. ; zimmer ), particularly for vulnerable people, including children (daly and morton ) and adults with cognitive impairments soc. sci. , , of (walsh et al. ), attention deficit hyperactivity disorder (schuck et al. ), autism (o’haire ), and depression and brain injuries (stapleton ). for instance, research has consistently shown that dogs can help decrease anxiety and stress, increase confidence and self-esteem under various types of duress (crenshaw ; dellinger ), and integrate information in a more efficient and profound manner, allowing more effective communication (chandler ). dogs have also been shown to increase feelings of security and warmth, reduce feelings of isolation, and regain control in stressful situations (wells ), thereby making people feel more comfortable and calm (mcnicholas and collis ). in fact, dogs have been shown to surpass any other type of animal (including human) in their ability to provide unconditional support (sanders ). despite the abundance of research highlighting the benefits of the human-canine relationship, there is limited research into the potential benefits that dogs can provide victims within the cjs. specifically, there have only been two studies, carried out in the uk, which have examined the utility of therapy dogs in court waiting rooms (spruin et al. b) and on the court experiences of survivors of sexual crimes (spruin et al. a). while both studies highlighted the positive impact that therapy dogs can have on the emotional well-being of victims and witnesses, along with the influence they have on reducing anxiety, stress and the fears associated with going to court, the focus of these studies was on the presence of pet therapy dogs, who are not purposely bred or professionally trained to work with vulnerable people or within high-stress environments, unlike adi-trained facility dogs (spruin and mozova ). one of the challenges highlighted in the two studies was the length of support therapy dogs can provide, highlighting the need for the use of facility dogs. with that, both studies also had a number of methodological limitations which need to be considered. for instance, the findings from spruin et al. ( b) were based on very short, semi-structured interviews with court users; these data also relied entirely on the participants’ own views and so there is a need for a more objective evaluation of such impact. likewise, the study carried out by spruin et al. ( b), relied on data from five case studies from one local court, the sources of evidence for these case studies primarily came from observational data, and short, semi-structured interviews with participants. in the context of police interviews (i.e., video-recorded interviews), there has been one study, carried out in the usa, which utilised a trained facility dog. the study found that the dog had a stress-reducing effect for children undergoing police interviews for allegations of child sexual abuse (krause-parello et al. ). whilst this study presented support for the use of facility dogs, the methodology did not allow for an understanding of the processes behind the positive impact. some anecdotal evidence also exists, showcasing the benefits that facility dogs have in supporting victims of crime (e.g., dellinger ; sandoval ; weems ). . . the present study to date, there has only been one study, globally, which has investigated the effects of facility dogs within police interviews (krause-parello et al. ) and no studies in the uk utilising a facility dog within a court or police interview setting. as such, based on recent government reports and academic literature emphasising the need for more emotional support during the investigation stages for survivors, coupled with the literature contending that video-recorded evidence in chief is helpful and should be standard practice for vulnerable victims (maguire et al. ), the current study explores the use of a facility dog for survivors of sexual crimes when undergoing a video-recorded interview. as research involving personal and sensitive topics, particularly in the cjs, often relies on low participant numbers (e.g., quas and goodman ; wheatcroft et al. ) and also, due to the limited number of facility dogs working in the uk (i.e., one dog working with kent police), a multiple case study approach was implemented (yin ). this approach allows for exploration of a phenomenon within its natural context and is the ideal methodology when holistic, in-depth understanding is needed (tellis ). it further allows for a variety of data sources to be utilised, enabling multiple facets of the phenomenon to be revealed and understood (yin ). this is particularly important for the current study, as it allowed for the voices of those involved within a case (e.g., victims, soc. sci. , , of police, family) to be considered. this is something that is not only lacking within current literature but is also an important factor that has been raised by the victims’ commissioner ( ) review on what works in supporting victims of crime; the getting it right for victims and witnesses report (ministry of justice ); and wider literature, all of which note the neglect of survivor voices in research (e.g., mcglynn and westmarland ). the current research, therefore, intends to fill in the gaps presented in the literature above, providing the first in-depth exploration into the use of facility dogs within a criminal justice setting. the overall aim of the study was to investigate the support that a facility dog can provide to survivors of sexual crimes when undergoing video-recorded interviews utilising the abe interview method. this multiple case study design is guided by two core research questions: ( ) what is the perceived impact of a facility dog by those directly involved with a specific case, including survivors, supporting individuals, and professionals? and ( ) what changes can be observed in survivors’ behaviour and state management through the introduction of this service? . materials and methods . . design as the research focused on exploring the support facility dogs can provide survivors of sexual crimes when undergoing video-recorded interviews, a multiple case study design was implemented (stake ), as this is considered one of the most robust methods for in-depth investigations into complex issues. the method also allows for the integration of various sources of information, capturing meaningful and elaborate data in a holistic and applied context (yin ; yin ), while also permitting one data type to validate the findings of another, providing greater confidence and validity within the results (tashakkori and teddlie ). . . participants . . . survivors as the focus of this research was on survivors of sexual offences, purposive sampling was employed to recruit participants. in this case, participants were chosen for a special situation based on judgement by an expert (ishak and bakar ). more specifically, the police officer who was interviewing the survivor suggested participants who they believed were particularly vulnerable and had been a survivor of a sexually-orientated crime. this method of sampling is one of the most commonly used sampling strategies for qualitative data, and sample sizes are determined based on saturation achieved from the data themselves (patton ). yin ( ) suggests that within a multiple-case study design, six to ten cases are a sufficient sample size if the results turn out as predicted. as such, once saturation was achieved across the selected cases, no further data were collected. in total, survivors of sexual offences, who were undergoing a video-recorded interview by an abe-trained police officer, were provided with a facility dog for the interview process. there were survivors ( female, male), and therefore, cases in total, all of whom identified as white british. their ages ranged from to (m = . , sd = . ). as previously mentioned, all participants were survivors of a sexual crime, which included: sexual offences (n = ), rape (n = ), and sexual assault (n = ). in terms of further vulnerability, the majority of survivors (n = ) also had a diagnosed disability or disorder, which included: autism (n = ), learning difficulties (n = ), attention deficient hyperactivity disorder (n = ), and anxiety disorder (n = ). the researchers are mindful that the demographic composition of the sample is homogenous in some respects (e.g., race), though this was reflective of the cases represented within the kent police during the data collection period. soc. sci. , , of . . . interviewing officers there were a total of interviewing officers from kent police, working across the cases (p and p were interviewed by the same officer; and p , p , and p were all interviewed by the same officer). in order to make it clear which survivor/case the officers are referring to in the qualitative analysis section, these officers have been given a different id for each case they worked on rather than using one id per officer (e.g., p a is referred to as ‘p a’ when she is talking about witness p ′s case and as ‘p a’ when she is referred to in relation to witness p ′s case). most of the interviewing officers were female (n = ), identified as white british (n = with n = identifying as white non-british), and ranged from – years old (m = . ; sd = . ). the number of years’ experience the officers had on the job ranged from – , although the average was . years (sd = . ). . . data collection in order to obtain a rich and comprehensive source of data, a triangulation approach to data collection was chosen (oliver-hoyo and allen ). this included collecting data via interviews, observations, and surveys. semi-structured interviews were carried out with the parent or guardian who was supporting the survivor throughout the police interview process. the interviews focused on topics relating to each respondent’s perceptions of the survivor in relation to their current experiences, the impact they felt the dog may have on the police interview process, and also their feedback on the service that the facility dog provides. these interviews were necessary to create a greater understanding and context (greene and hogan ) to the survivors’ experiences, while also providing some insight into perceived causal inferences (yin ). observational data were collected from the survivor’s initial contact with the facility dog until they proceeded to their police interview. this included interactions that the survivor had with the dog and also the dog’s behaviour throughout the process. to ensure reliability of the observations, two researchers gathered this data independently (yin ). a structured observation schedule was created for the observations and notes were also taken to further emphasise these observations. only those observations that were recorded by both researchers were used in view of utilising investigator triangulation to improve validity (stake ). these observations provided a greater richness and understanding to the interviews (creswell ), as it enabled an alternative perspective that could not be obtained by relying exclusively on interview data (maxwell ). survey data were collected from survivors to further delineate associations between the facility dog and the victims’ experience, while also corroborating evidence to enhance data credibility of the other data sources (patton ). survivors completed a brief survey both before meeting and interacting with the facility dog and then after interacting with him. the survey consisted of questions relating to the victim’s current emotional state, which were measured on a -point scale (‘not at all’ to ‘very much’). six questions (‘i feel . . . calm/tense/upset/relaxed/content/worried’) were derived from marteau and bekker ( ) -item state trait anxiety inventory (stai-y ). four additional questions (‘i feel . . . frightened/traumatised/safe/supported) were created for use in this study based on guidance provide by the ministry of justice (ministry of justice et al. ), which highlighted the importance of making victims feel safe and supported, as they may be frightened of authority figures and traumatised by their crime. in addition to these -items, before meeting the dog, victims were asked an additional open-ended question about their feelings towards their police interview and the presence of the dog. further qualitative data were collected from both survivors and interviewing officers. for survivors, upon completion of the police interview, they were asked to provide qualitative feedback in regards to their overall thoughts on the presence of the dog, further reflecting on the items on the survey. for officers, prior to the interview, interviewing officers were asked why they requested the facility dog and in what way they believe the dog may impact on the survivor and interview process. after the interview, they were asked to provide qualitative feedback in regards to their overall thoughts on the presence of the dog, the impact they perceived the dog to have and any further recommendations or soc. sci. , , of issues. in cases where an intermediary supported a survivor (more in the procedures section), they were also asked for feedback following the interview. . . ethics the study was conducted in accordance with the declaration of helsinki and was approved by the ethics chair of the faculty of social and applied sciences at canterbury christ church university, who confirmed that the study complied with the university’s research ethics and governance procedures (ethical approval code— /sas/ f). . . procedures following ethical approval, a small number of abe-trained police officers (n = ) who conduct video-recorded interviews for kent police were informed about the facility dog. they were asked to contact the researchers prior to conducting a video-recorded interview in cases where the presence of the dog was deemed suitable (e.g., no genuine fears or allergies). once officers identified and approached potential participants, they were asked to complete a brief survey detailing the reasons behind the request for the facility dog (e.g., could help with the victim’s anxieties). if survivors verbally agreed, the officer provided them with information about the research, detailing the purpose and aim of the study, as well as a picture of the dog and the research team prior to engaging with the team. on the day of each police interview, survivors arrived at the police station and were escorted to a private waiting area. informed consent was gained from survivors prior to data collection. they were also informed about the voluntary nature of their involvement, as well as anonymity and confidentiality of responses and their right to withdraw at any point. survivors were further told that observational data would be collected by researchers. survivors were then asked to complete a brief -item survey about their current emotional state. after, they were introduced to the facility dog. the dog used for this specific study was a -year-old labrador-retriever (oliver). he is an adi- accredited facility dog who had been professionally trained to provide quiet, non-judgmental companionship to vulnerable people in the criminal justice system. he was presented to survivors as a quiet companion, ensuring he is not presented as an incentive and is not provided with human characteristics, so that his presence cannot impact on further legal proceedings. after engaging with the dog for approximately – min, survivors were again asked to complete the brief -item survey, before going into their official video-recorded interview with the facility dog. while survivors were in their police interview, semi-structured interviews were carried out with the parent or guardian that was supporting the victim (mother (n = ), father (n = )). the interviews ranged in length from minutes to hours (m = . , sd = . ), this was dependent on the length of the survivor’s police interview, as once survivors were done with their interviews, they were escorted back to their family, at which point the interview ended. upon completion of the police interview, both the survivor and interviewing officer were asked to provide qualitative feedback on the presence of the dog and any impact they believed the dog had. as all survivors were considered to be vulnerable victims, a number of them had an intermediary (n = ) to help facilitate communication between the interviewing officer and the survivor. intermediaries that were involved were also asked at the end of the interview to provide any verbal feedback they had. once all the feedback was collected, survivors were then provided with the opportunity to say goodbye to the facility dog, after which they were debriefed and thanked for their time. . results . . data analysis the main source of data came from the semi-structured interviews with family members and the qualitative feedback provided by survivors and the interviewing officers. the observational and survey data were thus used as corroborating evidence to enhance data credibility of the qualitative soc. sci. , , of data (patton ). in order to conduct a rigorous case study, it is key that a suitable analytic strategy is chosen and followed (yin ). the steps suggested by leedy and ormrod ( ) were therefore used to analyse all data collected. these steps were broken down into three distinct phases. firstly, facts pertaining to each case were organised to provide a descriptive overview (see table ). a “case” refers to a single case study and comprises of data collected from: the survivor for whom the facility dog was requested, their interviewing officer, and any additional support who accompanied them (i.e., intermediary, parent). secondly, the qualitative data, which included the semi-structured interviews and qualitative feedback, were analysed to identify patterns that occurred across all cases. once patterns were established, the observational data were incorporated to provide a greater understanding of each theme. thirdly, the survey data were analysed using ibm spps statistics for windows, version (ibm corp, armonk, ny, usa) to provide further support to the outcomes. . . qualitative data the qualitative data collected were analysed using thematic analysis (braun and clarke ). to ensure the analysis was inductive, driven by the data, and not inadvertently biased by the preconceptions of the researchers who had designed the study, the data were analysed by an independent researcher who had not been involved in the study design or data collection stages (braun and clarke ). the coding of themes was therefore carried out without knowledge of the researchers’ expectations of the project (silverman ), ensuring a strong process of analytical credibility, and reliability was sustained across the interpretation of the data (gibbs ). following braun and clarke ( ) guidelines, the analysing researchers first read and then re-read the data in order to familiarise themselves with the content, noting down initial thoughts. on the next set of re-reads, codes were created based on the topic of each line of data and then the codes were grouped together in order to identify potential themes and sub-themes. only those themes which appeared in more than half of the cases are discussed within the results. a total of four main themes emerged from the data: ( ) a change in focus for the survivor, ( ) a difference in the survivors’ engagement, ( ) the dog as a comforter to keep the survivor calm, and ( ) a positive environment. once themes were highlighted, they were refined with sub-themes where applicable. each theme and corresponding sub-themes are presented below with example quotes from the interviews and qualitative responses (see table for an overview). it is important to note that the aim of the study was to capture shared experiences among all those involved in the cases. however, as noted in the literature review, it is important to recognise that different actors may have a different understanding of what constitutes success as relating to the use of the facility dog. the focus on shared experiences is an important one, as it is key that strategies are developed which enable success for all involved. however, in light of the possibly different objectives of the involved parties, the description of the themes is enhanced with this in mind. soc. sci. , , of table . overview of each case including type of crime, survivor demographics, and who was present on the day of the police interview. survivor details id type of crime age gender additional info additional support present officer title officer gender police interview length p sexual assault f father (p b) police constable (p a) m min p sexual offences f adhd mother (p b) detective constable—child protection (p a) f min p sexual offences f mother (p b) police constable (p a) f min p sexual offences f learning difficulties no one detective constable (p a) m min p sexual offences f mother (p c); intermediary (p b) detective constable—vulnerable investigation team (p a) f min p sexual offences m adhd mother (p c); intermediary (p b) detective constable (p a) f min p sexual offences m mother (p b) detective constable (p a) f min p sexual offences f autism mother (p b) detective constable (p a) f min p sexual offences f anxiety no one detective constable (p a) f min p sexual assault f autism mother (p c); intermediary (p b); detective constable—vulnerable investigation team (p a) f min p rape f learning difficulties mother (p b) detective constable (p a) f min p rape of a child under f autism mother (p b) detective constable—child protection (p a) f min p rape of a child under f autism mother (p c); intermediary (p b) detective constable (p a) f min soc. sci. , , of table . overview of the themes, the number of cases where the themes appeared, and example interview quotes illustrating the themes. theme number of cases example quote change of focus for the survivor n = p b: “he [the facility dog] really has changed the whole focus for [the witness]. before it was a scary thing he couldn’t do, but now, it’s something he is excited for.” a difference in the survivors’ engagement (sub-themes: change in demeanour; consenting to the police interview; enhanced communication) n = p a: “the interview went very well, she disclosed and talked more than she had ever in the past. i’ve been working as an interviewer for a few years and never have i seen such a change in response about attending an interview. when i met the individual in the past, she seemed quite withdrawn and timid, but with the dog she was so much more animated. whereas before she was dreading the interview, she became almost excited about it now that [the facility dog] was around.” the dog as a comforter to keep the survivor calm n = p : “[he] kept me completely calm. his whole presence that he was there, it was so comforting. i was holding his leash the whole time, i didn’t even need my own squishy toy. he was totally brilliant. i am so happy he was here.” positive environment n = p c: “this is not a child-friendly place, it’s not an inviting place for children. [the facility dog] makes it inviting, i think, he makes it feel as though you’re not about to go into an interview.” . . . a change in focus for the survivor one of the strongest themes across the cases was how the presence of the facility dog had changed the survivors’ focus; re-framing what was otherwise an extremely upsetting day for them and providing them with something positive to focus on: p b: “this service is something which needs to be considered much more because now they can talk about the dog and they don’t just have to talk about being at the police station. it completely changes your experiences.” p b: “before, she was so scared about coming here and then her focus just shifted to [the facility dog]: where he sleeps, what he eats, if he likes his job. and for me, that helped me know she was going to be okay.” thus, knowing that there would be a dog at the police station that they could engage with provided the survivor with a positive distraction from the fear and anxiety they had about the day and gave them something positive to focus on rather than ruminating on the negative aspects of the day. in fact, some of the survivors had actually been looking forward to going to the police station so they could meet the dog: p b: “it’s all she’s talked about . . . even last night, she was talking about how excited she was.” p a: “he has been so excited to meet [the dog]. we have been postponing his interview until we could use him. i’m glad we did. he was fantastic.” the survivors tended to side-step questions about how they felt about the interview itself, suggesting that they preferred not to think or talk about it, and the dog gave them something positive to focus on instead. for instance, when p was asked how her interview went, there was no mention of the interview itself. instead, she said: p : “he fell asleep [laughs]. he loves his ears being stroked so much that he fell asleep on me [laughs].” as well as providing a way for survivors to positively re-frame their thoughts about the interview, the dog also seemed to give them a way of coping when answering questions in the interview itself. as one survivor explained: p : “it helped during the interview, knowing he was there and that i could stroke him if it all got too much . . . i was also looking forward to playing with him afterwards and not think about what i was talking about.” soc. sci. , , of with that, the dog also gave them something to focus on during moments of stress and distress, providing them with a coping mechanism to ameliorate some of the anxiety and distress they were feeling, as p explained: p : “i didn’t need a break and i was scared i would. [the facility dog] is so warm and funny when he snores, he made me feel so much better. made it easier than i thought.” focusing on the dog during times of distress and anxiety was something which was frequently noted in the observations, too. for instance, p often looked at the dog during disclosures, tilting her head in such a way that only the dog was in her eye line. similarly, p , whose intermediary (p b) said, “he usually goes from one thing to the next when we are talking but he just stayed focused . . . he just sat staring at [the facility dog], did not lift his head or make eye contact at all during the interviews, instead fixating on the dog as he talked, stroking him and playing with his ears.” p was also noted as avoiding eye contact with the interviewer, instead choosing to maintain focus on the dog and both she and a number of other participants (p , p , p , p , p ) were noted as increasing the intensity with which they petted the dog during their disclosures. it is likely that the presence of the dog enabled survivors to regain some control over proceedings which they otherwise have very little control over. their ability to choose to focus on the dog who is only there to support them can be seen as crucial in their state management. the usefulness of the dog’s presence during disclosures was something often commented on by the interviewing officers afterwards: p a: “the interview went really well. the person interviewed remained calm and was able to explain what happened. this was in large part because of [the facility dog]. in the past, we have struggled to get her to open up. the individual was smiling every time she looked down at [the facility dog] during the interview. it really changed how she perceived the process and has really helped her deal with everything. he really was a huge success. it also helped in the interview in a lot of ways.” so rather than their focus on the dog being a negative distraction during the interview, the survivors’ focus on his presence actually enhanced their ability to verbally engage with the officers. as highlighted in the quote from officer p a, above, this changed how the survivor responded to questioning and enabled more coherent disclosures. this was something which was felt by the officers from multiple cases and is discussed in more depth in the next theme. . . . a difference in the survivors’ engagement another frequently occurring theme across all of the cases was how differently the survivor felt and behaved when the dog was present compared to when he was not. the three main areas these changes were discussed in relation to were changes in: the survivors’ demeanour, their willingness to be interviewed, and in the way they communicated during the interview. changes in demeanour as suggested by figure , a physical change was often noticed upon the dog’s arrival. for instance, p looked anxious and unhappy until the dog arrived and then, from that point onwards, she smiled almost continuously. similarly, p initially looked very anxious and fidgety, repeatedly saying how nervous she was and appearing to struggle to control her breathing. as soon as the dog arrived, however, she ran over to hug him and once she had directed him onto the sofa next to her, she looked happy and relaxed. these differences in how the survivor looked and behaved reflected differences in how they described feeling when the dog was present. for instance, p explained: p : “he was so good. he just sat there with me and even started snoring which made us laugh. i didn’t feel like i did before when i was interviewed, i just felt happy.” these changes were frequently commented on by the survivors’ support, too, as the mother of one survivor said: p b: “she was so nervous in the parking lot, quite anxious, and then she saw [the facility dog] and, well, you saw it: she changed. i haven’t seen her smile so much in ages. “ similar words were also uttered by p ′s mother: soc. sci. , , of p b: “last time we were here, it took hours to even get her in the room. she was shaking and crying and she didn’t want to do it. now she just went straight into the room! i can’t believe how happy she looks. she looks so different. and so much calmer.” hence, the positive effect the dog had on the survivors’ demeanour appeared to provide an emotional buffer for them, enabling them to do things they had previously been unwilling or unable to do, such as visiting the station or being interviewed. soc. sci. , , x for peer review of helped her deal with everything. he really was a huge success. it also helped in the interview in a lot of ways.” so rather than their focus on the dog being a negative distraction during the interview, the survivors’ focus on his presence actually enhanced their ability to verbally engage with the officers. as highlighted in the quote from officer p a, above, this changed how the survivor responded to questioning and enabled more coherent disclosures. this was something which was felt by the officers from multiple cases and is discussed in more depth in the next theme. . . . a difference in the survivors’ engagement another frequently occurring theme across all of the cases was how differently the survivor felt and behaved when the dog was present compared to when he was not. the three main areas these changes were discussed in relation to were changes in: the survivors’ demeanour, their willingness to be interviewed, and in the way they communicated during the interview. changes in demeanour as suggested by figure , a physical change was often noticed upon the dog’s arrival. for instance, p looked anxious and unhappy until the dog arrived and then, from that point onwards, she smiled almost continuously. similarly, p initially looked very anxious and fidgety, repeatedly saying how nervous she was and appearing to struggle to control her breathing. as soon as the dog arrived, however, she ran over to hug him and once she had directed him onto the sofa next to her, she looked happy and relaxed. these differences in how the survivor looked and behaved reflected differences in how they described feeling when the dog was present. for instance, p explained: p : “he was so good. he just sat there with me and even started snoring which made us laugh. i didn’t feel like i did before when i was interviewed, i just felt happy.” figure . observed behaviours exhibited by survivors upon initial introductions with the dog. these changes were frequently commented on by the survivors’ support, too, as the mother of one survivor said: p b: “she was so nervous in the parking lot, quite anxious, and then she saw [the facility dog] and, well, you saw it: she changed. i haven’t seen her smile so much in ages. “ similar words were also uttered by p ′s mother: p b: “last time we were here, it took hours to even get her in the room. she was shaking and crying and she didn’t want to do it. now she just went straight into the room! i can’t believe how happy she looks. she looks so different. and so much calmer.” hence, the positive effect the dog had on the survivors’ demeanour appeared to provide an emotional buffer for them, enabling them to do things they had previously been unwilling or unable to do, such as visiting the station or being interviewed. figure . observed behaviours exhibited by survivors upon initial introductions with the dog. consenting to the police interview as the above quote from p ′s mother (p b) illustrates, several of the survivors’ parents made reference to their children’s previous reluctance to be interviewed and the usefulness of the dog in enabling them to engage with the interview process: p c: “i think it could really help a lot of victims, especially kids. i know mine wouldn’t have been able to come without [the facility dog].” this difference in the survivors’ attitude to the interview was also something noticed by the officers conducting the interview: p a: “was able to build a really good rapport with the child because of [the facility dog] . . . [the facility dog] cuddled with him and he said it made him feel more confident and excited to come in. which he refused to do in the past.” thus, because the dog made the survivor more willing to come to the police station, and because the survivors were therefore in less of an agitated state, it then made it easier for the officers to build a rapport with the witness and increase the quality of the information they could obtain from them. whilst coming into a police interview is a clear goal of a criminal investigation, it is not always the case that this is the right action for survivors as per kaleidoscopic justice principles. however, in these cases, it is key to appreciate that the survivors wanted to engage, but often felt too uneasy to do so. by enabling them to continue in their justice journey without further traumatising them, the outcomes that the police and survivors desire can become more closely aligned. enhanced communication the interviewing officers often made reference to how much more fluid and coherent the survivors were when they were talking and how much more willing the survivors were to talk about the more distressing details: p a: “i would happily use [the facility dog] again as i felt he gave this child the confidence in order to speak up, as until the abe, she would only write what was done to her but in the abe, with the assistance of [the facility dog], she spoke and gave disclosure.” the consensus seemed to be that the dog acted as a source of comfort for the survivor, allowing them to keep calm and tell the officers what happened to them: soc. sci. , , of p a: “the interview went very well. the individual opened up for the first time and was calm and communicated clearly. the dog made a huge difference and made this a positive experience for the individual. he kept her calm when she is normally very anxious and unable to talk about the offence.” again, reference is made to the dog turning the interview into a positive experience for the survivor and this notion of the dog as a comforter, enabling them to remain calm, was the strongest and most commonly occurring theme present in the qualitative data from all cases. whilst communicating about distressing details seemed to be enhanced, this does not mean it was still not difficult for the survivors. however, as they were able to refocus their attention to the dog, as visible above, under section . . and below, under section . . , the negative impact of such disclosure can be seen to be mitigated. . . . the dog as a comforter to calm the survivor the reassurance that the survivors got from the dog was repeatedly noted in the observations. survivors such as p would only go near the interview suite once the dog arrived and some of the survivors made repeated checks to ensure the dog would not be taken away, indicating the importance of his presence for them and implying that he was acting as a much needed source of comfort. for instance, p asked, “i’m glad he is here, he can stay right?”, similarly, p repeatedly said, “he can come in with me, right?”. additionally, some survivors kept tight hold of his lead when they were with him, even whilst playing with him, reflecting a need to ensure that he stayed with them and to maintain a sense of control over their environment, which has been described by survivors in other studies as an environment where they do not feel to be in control at all: p : “i was calm the whole time because i was with him and i could have his lead and he was with me all the time. i took him to see the rooms and he was with me the whole time.” the repetition of the dog being with her “the whole time” suggests the importance of that to her, again indicating how much comfort she was drawing from having him by her side and being able to have some control over the situation. this was something which was often noticeable in other survivors’ speech, too: p : “it was really good. he was really good. he was going everywhere with me and he came to the room with me. it was fun to be with him and he is so cuddly. i could hug him and he was waiting for me when i was done to hug him.” hugging the dog appeared to be an important source of comfort for several of the survivors, as p described, “he was really cuddly and warm which was nice. and he stayed so close to me the whole time.” several of the other survivors also mentioned his warmth: “his body heat is quite comforting” (p ), which suggests that they drew comfort from his body heat and implies that the close proximity of his body provided them with reassurance, as p explained: “he definitely helped! he just sat with me, it was really nice. and he sat so close to me the whole time.” p ′s intermediary (p b) further noted how this is something which is “hard to achieve through any other method out there.” the uniqueness of what a facility dog can provide during their police interview in terms of comfort is particularly highlighted in the following quote from one survivor: p : “i could feel his snoring on my leg. it was strangely nice and soothing. he was just so relaxed with me. like he trusted me enough to sit on me and fall asleep. his presence just made me feel better.” the dog’s specialist training meant that he was an active participant in providing comfort to the survivors in times of stress and distress, as noted by one of the interviewing officers: “he could really sense when she was upset. i noticed when she was disclosing, it’s like he knew. every time, he inched closer to her body” (p a). this was something which did not go unnoticed even by the child survivors: p : “he stood up when i got upset and put his head on my leg. when i got more upset he tried to get even closer [laughs].” an -year-old child, laughing when talking about how distressed he was during a disclosure suggests a more positive reframing, with the dog’s behaviour enabling him to have a positive memory soc. sci. , , of to associate with the incident. the ability of the dog to calm the survivors’ emotions and, therefore, reduce the potential trauma of the interview itself was repeatedly noted by officers: p a: “i felt that he was amazing. not only did he allow the victim to give a very good abe, but he kept her calm and suppressed her anxiety.” the dog’s calming effect was not just on the survivors, but also reported by their families, as one mother said: p c: “even i could feel his calmness. i was shaking before and now i just feel so much better. it’s incredible.” arguably, the more at ease the survivors’ supports feel, the better it is for the survivor, and this knock-on effect of the dog’s presence on the atmosphere as a whole is the focus of the final theme. . . . positive environment although the dog’s main purpose was to provide support for the survivor, as mentioned above, he also had a calming effect on their support, too, and knowing that he was there for the survivor provided an additional form of comfort for the support: p c: “i didn’t want her going in there all alone and scared. i know she has people with her but knowing that [the facility dog] is there just for her, it really helps me feel better as well . . . she barely talks since all this happened. i just know [the facility dog] will help her feel safe. she worries about that a lot.” the suggestion that the dog’s presence would provide the survivor with a feeling of safety was confirmed by one of the survivors: p : “i would recommend [the facility dog] for children; he made me safe and happy.” part of this feeling of safety was likely due to the observation made by some of the support that having a dog present makes “the process less intimidating for people” (e.g., p b). even the officers who are used to working in the abe suites and were therefore more at ease in that environment than the visitors, commented on how different the atmosphere felt with the dog there: p a: “[the facility dog] . . . really broke the tension and made everything less clinical and much more personal.” p a: “it was a pleasant experience for the child. she had a really lovely experience and [the facility dog] was really helpful, creating a positive atmosphere.” p a: “he made everything feel much more relaxed, which is really important during an abe.” the notion that the dog’s presence made for a positive atmosphere and, thereby, a nicer environment was something which was brought up repeatedly by those used to dealing with vulnerable people. one interviewing officer said: p a: “it is an amazing service and it was visible that [the facility dog] made the environment more positive and enabled the victim to be calmer.” the positive effect, already discussed in previous themes, that the dog had on the survivors’ demeanour and also to how their support were feeling would have helped with this, but beyond that, there was a consensus that the dog’s presence reduced the formality and made everyone feel at ease more generally: p a: “every single person who came into the abe area and stroked the dog left with a smile on their face. i think kent police should have a “bring your dog to work day” and then we would all be happy.” p b: “i just think it helps all round. he lightens the mood and you can’t help but smile at that face.” . . . summary in sum, the qualitative data, which were supported above by the observational data, suggest that the facility dog enhanced the survivors’ willingness to discuss what had happened to them and their ability do so coherently. this was partly due to creating a more relaxed, less intimidating environment, soc. sci. , , of and largely to do with his comforting presence, which in turn helped to calm the survivors, thereby producing observable differences in the survivors’ demeanour and providing them with something positive to focus on, while also allowing them to reframe a potentially traumatising ordeal into a more positive experience. it was encouraging to see that the officers placed much importance on a comfortable environment for the survivors in their comments relating to the service. as noted in the literature review, the police may have different outcomes in mind in terms of the aims of a video-recorded interview. throughout this study, whilst commenting on quality evidence, they commented on the way the dog enabled better state management and communication, in line with survivors’ perspectives of what justice may look like. whilst it is not suggested here that police officers do not have disclosure in mind, their focus on survivor well-being was present throughout. it should also be highlighted that the dog himself was not observed as showing any signs of stress or distress during his time with any of the survivors, and was so comfortable during three of the cases, that he fell asleep cuddled up next to the survivor (p , p and p ), something which each of them seemed delighted by. it was also noted, by both the observers and the officers, that the dog did not act as a negative distraction during any of the cases. . . survey data the themes generated above were further supported by the survey data collected from the interviewing officers and survivors. when interviewing officers were asked why they requested the facility dog, the most common reason given was because they believed the dog’s presence would have a calming effect on the survivor (n = ). the term ‘calm’ was sometimes meant in terms of soothing fears and anxieties the officers had previously witnessed in their prior encounters with the survivor, and was sometimes meant with regards to trying to keep the survivor still for long enough to interview (e.g., due to problems with attention or hyperactivity). almost as commonly cited was the belief that the dog’s presence would help the survivor open up/communicate (n = ) and the hope that the service would alter the survivor’s focus (n = ) (either in terms of giving them something positive to focus on (n = ) or helping them to concentrate on the interview (n = )). when the survivors were surveyed before meeting the facility dog and asked how they were feeling about their upcoming video-recorded interview and how they felt knowing that the dog would be there, most (n = ) did not directly address the question about the interview, instead focusing their answers on the question about the dog. as can be seen from figure , the survivors’ answers about the dog were all positive and were either framed as eliciting positive feelings (e.g., excited, happy, supported) or as reducing negative feelings (e.g., less anxious, less scared). soc. sci. , , x for peer review of to interview (e.g., due to problems with attention or hyperactivity). almost as commonly cited was the belief that the dog’s presence would help the survivor open up/communicate (n = ) and the hope that the service would alter the survivor’s focus (n = ) (either in terms of giving them something positive to focus on (n = ) or helping them to concentrate on the interview (n = )). when the survivors were surveyed before meeting the facility dog and asked how they were feeling about their upcoming video-recorded interview and how they felt knowing that the dog would be there, most (n = ) did not directly address the question about the interview, instead focusing their answers on the question about the dog. as can be seen from figure , the survivors’ answers about the dog were all positive and were either framed as eliciting positive feelings (e.g., excited, happy, supported) or as reducing negative feelings (e.g., less anxious, less scared). figure . survivors’ feelings relating to the presence of the facility dog. of the survivors who did refer to their feelings about the interview directly (n = ), one admitted to being “very scared” (p ), one said they were “really nervous” (p ), and one said they were “very stressed about the interview, very uncomfortable” because they did not “like talking about [what happened]” (p ). however, even those who only talked about the dog gave answers which suggested that the thought of the interview was upsetting for them; which was likely why they chose not to answer that part of the question directly. for example, p said that she thought the dog would “make me brave enough to talk” and both p and p said they thought that having a dog sitting with them would “help me get through the interview.” so it was clear, even for those who did not directly answer the question about the interview specifically, that they were scared and/or anxious and viewed it as another ordeal to get through. this was also supported by the survivors’ anxiety scores. in their survey beforehand, survivors were asked to fill out a -item anxiety scale. the range of possible scores is – with higher scores representing higher levels of anxiety. before meeting the facility dog, the survivors’ anxiety about their upcoming police interview ranged from to with a mean anxiety score of . (sd = . ). after spending some time with the dog, the anxiety ranged from – with a mean anxiety score of . (sd = . ). this represents a significant drop in anxiety, t( ) = . , p < . , d = . (see figure ). figure . survivors’ feelings relating to the presence of the facility dog. soc. sci. , , of of the survivors who did refer to their feelings about the interview directly (n = ), one admitted to being “very scared” (p ), one said they were “really nervous” (p ), and one said they were “very stressed about the interview, very uncomfortable” because they did not “like talking about [what happened]” (p ). however, even those who only talked about the dog gave answers which suggested that the thought of the interview was upsetting for them; which was likely why they chose not to answer that part of the question directly. for example, p said that she thought the dog would “make me brave enough to talk” and both p and p said they thought that having a dog sitting with them would “help me get through the interview.” so it was clear, even for those who did not directly answer the question about the interview specifically, that they were scared and/or anxious and viewed it as another ordeal to get through. this was also supported by the survivors’ anxiety scores. in their survey beforehand, survivors were asked to fill out a -item anxiety scale. the range of possible scores is – with higher scores representing higher levels of anxiety. before meeting the facility dog, the survivors’ anxiety about their upcoming police interview ranged from to with a mean anxiety score of . (sd = . ). after spending some time with the dog, the anxiety ranged from – with a mean anxiety score of . (sd = . ). this represents a significant drop in anxiety, t( ) = . , p < . , d = . (see figure ).soc. sci. , , x for peer review of figure . survivors’ anxiety about their upcoming police interview, before and after engaging with the facility dog. higher scores indicate greater anxiety. . discussion this study set out to investigate the support that facility dogs can provide survivors of sexual crimes when undergoing a video-recorded interview. the multiple case study was guided by two core research questions: ( ) what is the perceived impact of a facility dog by those directly involved with a specific case? and ( ) what changes can be observed in survivors’ behaviour and state management through the introduction of this service? overall, the findings suggest that the facility dog provided a much needed and beneficial service to survivors, helping them feel calmer and more comfortable, both prior to the interview and during. the dog also provided survivors with a more positive environment, allowing them to focus on the interview and communicate more openly about their experiences. participants consistently reported that the facility dog helped to reduce the fear of the interview process, providing them with something positive to focus on. it was also noted by several participants how the comforting presence of the dog created an environment that better enabled the survivor to engage within the interview. while the benefits of the facility dog were highlighted by participants in various ways and to different degrees, the overall findings are consistent with previous anecdotal evidence which emphasises the benefits that facility dogs provide victims in the cjs (e.g., dellinger ; sandoval ; weems ). the results also add to the findings from the one other study, conducted in the usa, which investigated the presence of a facility dog during a police interview with children. krause-parello et al. ( ) found that when a facility dog was present, a child’s stress significantly decreased after their police interview. here, we found evidence of even wider benefits. the findings further support the more general body of evidence showing that dogs help to alleviate stress for people when under duress (crenshaw ) and make them feel more calm and relaxed (mcnicholas and collis ), as well as more in control of the processes. along with the emotional support provided, the survivors also perceived the facility dog to create a more positive and comfortable environment. research has continually emphasised the detached and intimidating nature of the investigation process (beckett and warrington ), particularly for young survivors of sexual crimes who often express dissatisfaction with the cjs due to the uncaring and impersonal processes (marsh et al. ). the importance of providing survivors with a relaxed and comfortable environment, where they feel safe and supported, has been a key message in recent evidence reviews on policing and safeguarding (allnock ). the current study, therefore, found support for a novel and innovative way to help the criminal justice environment become more victim-survivor friendly and comfortable, a key objective of the victim’s strategy (hm government ) and an important part of the interview process (ministry of justice et al. ). survivors were able to physically interact with the dog on a personal level (e.g., touching, cuddling), an interaction that many survivors are not comfortable doing with others, or are not allowed to do with individuals in official supportive capacities. it could therefore be suggested that this interaction figure . survivors’ anxiety about their upcoming police interview, before and after engaging with the facility dog. higher scores indicate greater anxiety. . discussion this study set out to investigate the support that facility dogs can provide survivors of sexual crimes when undergoing a video-recorded interview. the multiple case study was guided by two core research questions: ( ) what is the perceived impact of a facility dog by those directly involved with a specific case? and ( ) what changes can be observed in survivors’ behaviour and state management through the introduction of this service? overall, the findings suggest that the facility dog provided a much needed and beneficial service to survivors, helping them feel calmer and more comfortable, both prior to the interview and during. the dog also provided survivors with a more positive environment, allowing them to focus on the interview and communicate more openly about their experiences. participants consistently reported that the facility dog helped to reduce the fear of the interview process, providing them with something positive to focus on. it was also noted by several participants how the comforting presence of the dog created an environment that better enabled the survivor to engage within the interview. while the benefits of the facility dog were highlighted by participants in various ways and to different degrees, the overall findings are consistent with previous anecdotal evidence which emphasises the benefits that facility dogs provide victims in the cjs (e.g., dellinger ; sandoval ; weems ). the results also add to the findings from the one other study, conducted in the usa, which investigated the presence of a facility dog during a police interview with children. krause-parello et al. ( ) found that when a facility dog was present, soc. sci. , , of a child’s stress significantly decreased after their police interview. here, we found evidence of even wider benefits. the findings further support the more general body of evidence showing that dogs help to alleviate stress for people when under duress (crenshaw ) and make them feel more calm and relaxed (mcnicholas and collis ), as well as more in control of the processes. along with the emotional support provided, the survivors also perceived the facility dog to create a more positive and comfortable environment. research has continually emphasised the detached and intimidating nature of the investigation process (beckett and warrington ), particularly for young survivors of sexual crimes who often express dissatisfaction with the cjs due to the uncaring and impersonal processes (marsh et al. ). the importance of providing survivors with a relaxed and comfortable environment, where they feel safe and supported, has been a key message in recent evidence reviews on policing and safeguarding (allnock ). the current study, therefore, found support for a novel and innovative way to help the criminal justice environment become more victim-survivor friendly and comfortable, a key objective of the victim’s strategy (hm government ) and an important part of the interview process (ministry of justice et al. ). survivors were able to physically interact with the dog on a personal level (e.g., touching, cuddling), an interaction that many survivors are not comfortable doing with others, or are not allowed to do with individuals in official supportive capacities. it could therefore be suggested that this interaction enabled an environment that allowed them to re-anchor their thoughts in a constructive light, mitigating the negative connotations that often surround the legal process. this had a positive effect on the survivors’ general demeanour and motivation towards the interview, allowing them to focus on the task at hand—the interview. the benefits shown could also help to alleviate the secondary victimisation that many victims experience as a result of the cjs processes, as an important pathway between victimization and emotional recovery is the way victims feel they are treated within the cjs (elliott et al. ; parsons and bergin ). the emotional and environmental benefits that the facility dog provided further influenced the credibility of the survivors, as it allowed them a pathway to better communication. research on witness credibility suggests that maintaining a relaxed state with clear and fluent communication are key indicators of credibility (boccaccini and brodsky ). results from the current study showed a decrease in anxiety when the facility dog was present and an increase in overall comfort for the survivor, helping to mitigate the heightened levels of fear and anxiety that are often associated with the traumatic experiences of sexual crimes (e.g., campbell and wasco ), enabling them to communicate more clearly within their police interview. previous research has shown that victims-survivors are able to communicate more effectively when their emotional well-being is protected (o’mahony et al. ). with that, bowers ( ) contended that lawyers across north america have been encouraging the use of facility dogs, as they help individuals to communicate with more ease. similarly, spruin et al. ( a) suggested that such a service can be useful in allowing survivors of sexual crimes to feel less anxious and more confident prior to giving evidence. the current study, therefore, provides strong grounding to utilising facility dogs as an aid to communication. under section (s. ) of the youth justice and criminal evidence act ( ), aids to communication may be permitted to enable a witness to give best evidence; this can be through a communicator, or through a communication aid or technique. the findings that interviewing officers commented on the impact of the facility dog on state management as a facilitator to better communication is also key here. as the police can be target-driven in terms of obtaining disclosure, the officers’ focus on state management as the key factor, rather than disclosure, shows an approach more in line with a survivor’s perceptions of justice. overall, the findings not only provide evidence for the benefits that facility dogs can have in supporting survivors of sexual crimes, but they also highlight the impact these dogs could have on current practices and policies within the cjs. in particular, facility dogs have the potential to provide survivor-focused support throughout the whole criminal justice process, thereby providing an experience that is not only less traumatic and intimidating, but also one that is emotionally supportive and comforting. this is something that is currently lacking within the cjs; it is a process that needs to soc. sci. , , of be more personal, where victims-survivors do not feel like they are accessories to the system, but rather contributors to justice (payne ). the current findings have thus provided the first step toward developing an initiative that has the potential to radically progress and modernize the services currently available to victims. the cornerstone to this initiative lies within the unique ability that dogs have in terms of supporting humans. the evolutionary bond that has existed between humans and canines has been built over thousands of years of evolution (coppinger and coppinger ), which has had a significant effect on our genetic makeup (persson et al. ). as a result, dogs naturally play a role in facilitating trust and attachment (yang et al. ), they also naturally aid in the reduction of fear, anxiety and other negative moods (guzmán et al. ), providing a number of emotional benefits that surpass those of any other animal and even humans. in fact, research shows that dogs can create an instant bond with a person and elicit immediate comfort, similar to the bonds created by mothers and their newborn infants (odendaal and meintjes ). the power of this relationship was also shown in the current study, where all survivors noted positive effects immediately upon interacting with the facility dog. through feelings of being supported and comfortable, being in a more favourable environment, and being able to give evidence in a more credible manner, the use of facility dogs can bring us one step closer to bridging the existing justice gap for survivors of sexual offending. being able to have a voice and being treated with dignity and fairness all relate to kaleidoscopic justice (mcglynn and westmarland ). the current findings strongly show that participants felt more positive on a number of different factors relating to their experiences, perceiving their journey in a different light, hence increasing their perceptions of justice. this is important for all criminal justice agencies. specifically, as the focus of this study was on police interviewing (via video-recorded interview), embedding a service like this into police practice would enable one part of the policing vision (national police chiefs’ council ), relating to effective and better caring for victims, to come to fruition. although this research provides a strong argument for the introduction of facility dogs into the cjs, there are limitations to consider. a common critique of a case study design lies in its small sample size. whilst it was not the intention of this research to provide generalizable findings, due to the depth provided, we believe that naturalistic generalisation (stake ) can be achieved. with that, the design was further intended to give survivors, and their support, a chance to give feedback on their experiences. the government has introduced a range of initiatives and policies to improve the experiences of victims. likewise, academics have continued to debate the needs and rights of these individuals. however, what has been consistently missing throughout all these provisions is the voice of the victim. a fundamental part to understanding the needs of victims is to listen to their perceptions of the support they receive (victims’ commissioner ). part of meeting the needs of victims is to give them a voice where they can express their experiences, thoughts and desires (bottoms and roberts ; mcglynn and westmarland ). the current study, therefore, incorporated this voice into the research, in order to ensure a victim-focused viewpoint. that being said, it is key to conduct further and larger research as a way of elaborating on the present results, as this study took place in conjunction with one police force, therefore, the survivors involved were from a specific jurisdiction—south-east england. survivors may have different experiences based on provisions provided in different parts of the country. with that, a single adi-accredited facility dog was used, and while all facility dogs must adhere to the same adi standards, future research should explore ways of including more facility dogs from other countries, and also sustainable ways of training more adi-facility dogs within the uk. lastly, as has been noted throughout, it is key to further explore the way the facility dog can impact on perceived justice based on the different actors involved (i.e., survivors versus police officers); such comparisons could not be made here due to the design and study aims. however, future research should thoroughly explore how the use of facility dogs aligns with the desired outcomes of the different parties involved. for example, enhanced disclosure may not always be preferred to survivors, though it is preferred to the police. soc. sci. , , of this study set out to evaluate the support that facility dogs can provide to survivors of sexual crimes within police interviews. it was the first study, globally, to incorporate the perception of the survivor within the evaluation, thus providing an in-depth understanding into the experiences of vulnerable survivors and the support that facility dogs can provide. it was also the first study in the uk, and europe, to explore the use of facility dogs within the cjs and the possible benefits these dogs could have throughout the criminal justice process. the results identified a much needed service, which provided a number of benefits to the survivors that utilised the facility dog, including: helping them feel calmer and more comfortable, providing a positive environment, and allowing them to focus on the interview. the impact of these benefits were further reflected in the physical changes (e.g., smiling, stopping crying, looking happier, laughing, etc.) of the survivors and also their shift in focus towards the interview process. the current study, therefore, presents very positive findings relating to the impact of facility dogs on survivors of sexual crimes and bridging their justice gap; however, due to its design and inherent limitations, it is highly recommended that future research is conducted to explore the service further. nevertheless, it is recommended that the cjs in england and wales explore the use of this service with police interviews, with potential to expand the use of these dogs to other areas of the cjs. due to the success of this pilot evaluation, as noted by not only practitioners but also survivors themselves, a number of police services in england have already included the exploration of this service in their agenda of improving survivor experiences, and we are confident that such initiatives should continue. author contributions: conceptualization, e.s. and k.m.; methodology, e.s. and k.m.; software, n/a; validation, e.s. and k.m.; formal analysis, t.d.; investigation, e.s. and k.m.; resources, e.s., k.m., and r.f.; data curation, e.s., k.m., and r.f.; writing—original draft preparation, e.s., k.m., and t.d.; writing—review and editing, e.s., k.m., and t.d.; visualization, e.s., k.m., and t.d.; supervision, e.s. and k.m.; project administration, e.s. and k.m.; funding acquisition, n/a. all authors have read and agreed to the published version of the manuscript. funding: this research received no external funding. acknowledgments: the authors are grateful to duo dogs, kent police, and the interviewing officers for their contribution to the project. we would also like to acknowledge and thank both duo dogs and kent police for their ongoing support for the research project. conflicts of interest: the authors declare no conflict of interest. references allnock, debra. . what do we know about child sexual abuse and policing in england and wales? evidence briefing for the national policing lead for child protection and abuse investigation. luton: university of bedfordshire, international centre. antaki, charles, emma richardson, elizabeth stokoe, and sara willott. . police interviews with vulnerable people alleging sexual assault: probing inconsistency and questioning conduct. journal of sociolinguistics : – . 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[crossref] yin, robert k. . case study research: design and methods, st ed. beverly hills: sage publishing. yin, robert k. . case study research: design and methods, nd ed. beverly hills: sage publishing. yin, robert k. . case study research: design and methods, rd ed. thousand oaks: sage publishing. youth justice and criminal evidence act. . available online: http://www.legislation.gov.uk/ukpga/ / / contents (accessed on may ). zimmer, randi m. . partnering shelter dogs with prison inmates: an alternative strategy to reduce recidivism and teach social therapy. master’s thesis, american public university, charles town, wv, usa. © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . /j. - . .tb .x http://dx.doi.org/ . /j. - . . .x http://dx.doi.org/ . /bf http://dx.doi.org/ . / http://dx.doi.org/ . /oxfordjournals.bjc.a http://dx.doi.org/ . / / http://www.legislation.gov.uk/ukpga/ / /contents http://www.legislation.gov.uk/ukpga/ / /contents http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	the survivor journey 	the video-recorded interview 	what about the perceived justice? 	facility dogs as a form of quiet companionship and support 	the present study 	materials and methods 	design 	participants 	survivors 	interviewing officers 	data collection 	ethics 	procedures 	results 	data analysis 	qualitative data 	a change in focus for the survivor 	a difference in the survivors’ engagement 	the dog as a comforter to calm the survivor 	positive environment 	summary 	survey data 	discussion 	references dementia and the person-centred care approach. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /nop. . . .e corpus id: dementia and the person-centred care approach. @article{mcgreevy dementiaat, title={dementia and the person-centred care approach.}, author={j. mcgreevy}, journal={nursing older people}, year={ }, volume={ }, pages={ - } } 	j. mcgreevy 	published 	medicine 	nursing older people approaches to care that focus solely on biomedical needs are still rife in dementia; however, a person-centred approach is emerging that focuses on 'seeing the person'. this article explores the literature on person-centred dementia care to determine if it is an ideal rather than a reality. the background to the development of person-centred care is presented with reference to policies in place in the uk. using the setting of long-term care, the journey of people with dementia is explored at… expand view on pubmed doi.org save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations view all tables from this paper 	 table citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency a race against time: the dementia epidemic 	b. nair, elise mansfield, a. waller 	medicine 	 	view excerpt, cites background save alert research feed patient‐centredness in acute stroke care – a qualitative study from the perspectives of patients, relatives and staff 	l. busetto, christina stang, + authors c. gumbinger 	medicine 	european journal of neurology 	 	 	view excerpt, cites background save alert research feed decision-making in caring for people with dementia at the end of life in nursing homes. 	a. koppitz, g. bosshard, s. kipfer, l. imhof 	medicine, psychology 	international journal of palliative nursing 	 	 save alert research feed care home managers' knowledge of palliative care: a northern irish study. 	g. mitchell, j. mcgreevy, d. preshaw, j. agnelli, m. diamond 	medicine 	international journal of palliative nursing 	 	 	view excerpt, cites background save alert research feed centeredness in healthcare: a concept synthesis of family‐centered care, person‐centered care and child‐centered care 	i. coyne, i. holmström, maja söderbäck 	psychology, medicine 	journal of pediatric nursing 	 	 	highly influenced 	view excerpts, cites background and methods save alert research feed what is a ‘timely’ diagnosis? exploring the preferences of australian health service consumers regarding when a diagnosis of dementia should be disclosed 	r. watson, jamie bryant, r. sanson-fisher, elise mansfield, t. evans 	medicine 	bmc health services research 	 	 	 	view excerpt, cites background save alert research feed level of knowledge about alzheimer's disease among nursing staff in suzhou and its influencing factors. 	l. lin, shujiao lv, j. liang, hui-ling li, y. xu 	medicine 	current alzheimer research 	 save alert research feed co-creating person-centred care in acute care 	lillian hung 	medicine 	 	view excerpts, cites background save alert research feed ondervoeding bij ouderen: december 	m. h. verwijs, jos w borkent, m. schueren 	medicine 	 save alert research feed experiences of staff and family members of inpatients with dementia where personal passports are used to support care in an acute setting 	o' reilly, s. elizabeth 	medicine 	 save alert research feed references showing - of references sort byrelevance most influenced papers recency person-centred dementia care: a vision to be refined 	t. epp 	medicine 	 	 save alert research feed changing attitudes in dementia care and the role of nurses. 	l. burgess, sean page, p. hardman 	medicine 	nursing times 	 	 	view excerpt, references background save alert research feed disclosing a diagnosis of dementia: a background to the phenomenon. 	g. mitchell, patricia mccollum, c. monaghan 	medicine 	nursing older people 	 	 	pdf 	view excerpts, references background save alert research feed advance care planning for people with dementia: a review 	k. dening, l. jones, e. sampson 	medicine 	international psychogeriatrics 	 	 	view excerpt, references background save alert research feed person-centredness in gerontological nursing: an overview of the literature. 	b. mccormack 	psychology, medicine 	journal of clinical nursing 	 	 	highly influential 	view excerpts, references background save alert research feed the transition to dementia – individual and family experiences of receiving a diagnosis: a review 	l. robinson, a. gemski, + authors j. manthorpe 	medicine, psychology 	international psychogeriatrics 	 	 	highly influential 	view excerpts, references background save alert research feed family experiences in the journey through dementia diagnosis and care 	c. teel, p. carson 	medicine 	 	 	view excerpt save alert research feed applying pharmacology to practice: the case of dementia 	g. mitchell 	medicine 	 	 	highly influential 	view excerpts, references background save alert research feed managing dementia agitation in residential aged care 	j. bidewell, e. chang 	psychology 	 	 	view excerpt, references background save alert research feed the personal impact of disclosure of a dementia diagnosis: a thematic review of the literature 	g. mitchell, patricia mccollum, c. monaghan 	psychology 	 	 	view excerpts, references background save alert research feed ... ... related papers 	abstract 	tables 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue jaan_ .. practice empowering your patients in the fight against methicillin-resistant staphylococcus aureus christine k. tisinger, rn, bs, cen (clinician i, staff nurse) emergency department, doctor’s hospital of sarasota, sarasota, florida keywords methicillin-resistant staphylococcus aureus (mrsa); community acquired mrsa; hospital-acquired mrsa. correspondence christine k. tisinger, rn, bs, cen, emergency department, doctor’s hospital of sarasota, bee ridge road, sarasota, fl . tel: - - x (work); fax: - - ; e-mail: ctisinge@health.usf.edu received: april ; accepted: may doi: . /j. - . . .x abstract purpose: to provide patient teaching points for primary care management and control of methicillin-resistant staphylococcus aureus (mrsa) through applica- tion of the latest research regarding transmission of this bacteria. data sources: case reports, scientific literature, and the recommendations of expert professional groups. conclusions: mrsa is a well studied yet continually evolving superbug. there is a paucity of literature regarding detailed home management and containment of mrsa. this review acknowledges the critical importance of patient education regarding mrsa infections and empowers patients with knowledge that can positively impact treatment outcomes. implications for practice: awareness of transmission modes and recognition of sources for relapse of infectious states can curb the spread of mrsa in the community. few people can resist the warm, wet kisses of a puppy. but how many realize that this and other forms of affection between humans and animals can spread methicillin- resistant staphylococcus aureus (mrsa) (baptiste et al., )? new research has demonstrated that dogs, among other pets, have been found to suffer from (leonard et al., ) and become colonized with mrsa (malik, coombs, o’brien, peng, & barton, ; van duijkeren et al., ). research by manian ( ) has shown that pets have the potential to transfer mrsa to humans. another study by o’mahony et al. ( ) has also shown that the strains of mrsa isolated in domestic animals were identical to human strains. mrsa has been cultured in dogs, cats, rabbits, horses, as well as a single seal and an african grey parrot (manian; o’mahony et al.). mrsa is a global health problem (vandenesch et al., ) and continues to flourish despite years of research and the development of new antibiotics to eradicate it (siegel, rhinehart, jackson, chiarello, & healthcare infec- tion control practices advisory committee for the centers for disease control and prevention, ). the problem is so serious that mrsa has been listed by the infectious diseases society of america as a ‘‘superbug’’ and is further described as ‘‘one of the six top-priority dangerous, drug- resistant microbes’’ (baragona, ). in the united states, mrsa is now the number one offender in nosocomial infections (baragona). with the continued virulence of mrsa, patient teach- ing becomes a critical component in the management of patients in the home setting. thorough teaching can empower patients with proactive measures to eradicate mrsa from their homes, avoid reinfections, and prevent further spreading. these efforts in teaching will support patient autonomy, enable patients to make healthy life- style choices, and alleviate anxiety. eradication of mrsa is complicated and will require the comprehensive, knowl- edgeable efforts of primary healthcare providers and patients in order to be effective in the home or other settings. purpose the purpose of this review is to provide clinical practice recommendations for patient teaching in the primary care journal of the american academy of nurse practitioners ( ) – ª the author(s) journal compilation ª american academy of nurse practitioners setting, which are based on current evidence and the recommendations of professional societies. the latest trend in mrsa infection as well as the newest mrsa research involving mrsa transmission through pets is highlighted. a quick reference for factors associated with mrsa infections is included, as well as a patient teaching guideline to assist the primary care practitioner in the management of patients with mrsa infections in the home setting. background there are two types of mrsa, community-acquired mrsa (ca-mrsa) and hospital-acquired mrsa (ha- mrsa). the oldest of these is ha-mrsa, first discovered in the s. it requires a compromised host and is no stranger to hospital intensive care units. over time, it has demonstrated resistance to multiple drugs in the hospital setting (baggett et al., ; centers for disease control and prevention [cdc], ) and has been associated with acute and nonacute healthcare facilities (cdc, a). in these inpatient settings, ha-mrsa has been associated with pneumonias, urinary tract infections, bloodstream infections, and wound infections (cdc, c). refer to table for further delineation of factors associated with ha-mrsa. emergence of mrsa in the community was noted sporadically in the s and s and was initially believed to be just the spread of ha-mrsa to the com- munity via colonized ha-mrsa patients and healthcare workers. the significance of ca-mrsa was not fully recognized until , when a strain claimed the lives of four young, healthy children in north dakota (cdc, ). subsequently, ca-mrsa has spawned outbreaks around the globe among healthy persons in the commu- nity setting. laboratory testing was developed using dna technology and molecular epidemiological studies which enabled researchers to prove that genetically different strains of mrsa were involved in the outbreaks of ha- mrsa andca-mrsa (king et al., ). the cdc ( a) acknowledges that three different strains of mrsa in the united states have been found in ca-mrsa outbreaks. historically in the united states, outbreaks of ca-mrsa have occurred among certain ethnic groups including pacific islanders and midwestern and alaska native amer- icans (baggett et al., ; cdc, ; stemper, shukla, & reed, ), in newborn nurseries (cdc, ), and in day care centers (iyer & jones, ). this version of mrsa (cdc, c) has been primarily associated with soft tissue and skin infections but in some cases has led to more serious conditions requiring hospitalization or even deaths (gonzales et al., ). table shows further details with regard to factors associated with ca-mrsa. thus far, ca-mrsa has not demonstrated the multiple drug resistance patterns of ha-mrsa, but it is no less of a threat to health care than ha-mrsa. ca-mrsa does not require a weakened host and therefore can spread readily in the community setting. although phenotypically the two types of mrsa differ, it is becoming more difficult to distinguish between them clinically. it is possible to find both types of mrsa in the community and hospital set- tings. the labels of ca-mrsa and ha-mrsa are becom- ing misnomers as trends in mrsa research show that strains of ca-mrsa are now being found in substantial nosocomial cases of mrsa (maree, daum, boyle-vavra, matayoshi, & miller, , seybold et al., ; skiest et al., ). for patient teaching purposes, it is not necessary to distinguish between the two types of mrsa. distinguishing between types is critical, however, for the table factors associated with mrsa infections ca-mrsa ha-mrsa female gender a recent antibiotic use h other than caucasian a family member with ha-mrsa i iv drug abuse b recent hospitalization h incarceration c hemodialysis h roommate with ca-mrsa d implanted medical device h gym/sports team member e living in long-term care facility h member of uniformed services d recent surgery h family/friend employed in health care d antibiotic use within months b hospitalization within months a diabetes b active skin disease b current malignancies b tattoo recipient f crowded living conditions g poor hygiene g cuts or abrasions g a king et al. ( ). b iyer and jones ( ). c centers for disease control and prevention. ( ). methicillin-resistant staphylococcus aureus skin and soft tissue infections in a state prison— mississippi, . morbidity and mortality weekly report, ( ), – . d campbell, k. m., vaughn, a. f., russell, k. l., smith, b., jimenez, d. l., barrozo, c. p., et al. ( ). risk factors for community-acquired methicillin-resistant staphylococcus aureus infections in an outbreak of disease among military trainees in san diego, in . journal of clinical microbiology, ( ), – . e centers for disease control and prevention ( a). f centers for disease control and prevention. ( ). methicillin-resistant staphylococcus aureus skin infections among tattoo recipients—ohio, kentucky, and vermont, - . morbidity and mortality weekly report, ( ), – . g centers for disease control and prevention ( b). h gorwitz et al. ( ). i calfee et al. ( ). c.k. tisinger empowering your patients purposes of prescribing appropriate antimicrobials in the primary care setting, conducting research, for public health tracking of strains in outbreaks and surveying local resistance patterns. modes of transmission in order to impact patient teaching, the healthcare pro- fessional and patients must recognize methods of contain- ment and transmission. according to the cdc ( c), mrsa is primarily spread in the community setting via unwashed hands. hand contamination occurs through contact with infected persons/wounds, body sites of col- onized persons, or contact with inanimate surfaces/objects exposed to body fluid from infected or colonized persons (cdc, b). it is critical to note that people can remain asympto- matic carriers or become colonized with mrsa. the cdc acknowledges that it is possible to develop nasal colonization for mrsa after exposure, but the incidence is extremely low compared to the colonization of non- mrsa. patients who are colonized may or may not have been treated for past infections involving mrsa. even after resolution of symptomatic mrsa infections, some patients remain colonized for months (van duijkeren, wolfhagen, heck, & wannet, ; weese et al., ). it has been culturedin the nose, throat,perineum,andskin lesions of asymptomatic human subjects (van duijkeren et al., ). at present, the cdc ( ) does not recom- mend routine random screening of humans to determine mrsa colonization upon admission to hospitals. the most recently discovered means of transmission is the family pet. although the rate of mrsa infections for treated animals remains low (malik et al., ), mrsa incidence has not been exhaustively studied in this pop- ulation. historically, mrsa in animals had only been seen infrequently in postoperative infections (morris, rook, shofer, & rankin, ). the unsuspected emergence of both ha-mrsa and ca-mrsa strains in the domestic animal population as a primary cause of non–postopera- tive infections will bear watching more closely in the future. isolated cases of protracted or recurrent mrsa infec- tions in the human outpatient setting have been linked to pets in the home being colonized. until the family pet was suspected, cultured and treated along with human occu- pants of the home, the infection remained refractory to treatments (manian, ; van duijkeren et al., ; ). a case of a pet therapy dog that developed positive mrsa cultures after visiting gerontology wards in a hos- pital in the united kingdom raises further concerns for human to animal transmission of mrsa (enoch et al., ). transmission of mrsa via shared equipment or surfaces has been documented among athletes having close contact during sports or sharing showers, towels, or equipment (cdc, a). one study by dietze, rath, wendt, and martiny ( ) demonstrated that mrsa could live on the external wrap of sterile packaging for more than weeks. its ability to survive outside of the human body has made it an elusive foe of hospitals for decades. importance of teaching the clinician should consider all mrsa infections as contagious as impetigo. by taking this perspective, the importance of strict personal hygiene, housekeeping, and hand washing regimens will become important focal points in patient teaching designed to help curb the spread of mrsa within the household or community. patient teaching for anyone with an mrsa infection should also include specific instructions for home care regarding the laundering, wound covering, sharing rules, and pet con- cerns. these of course, would be in addition to medica- tions, wound care, and follow-up care instructions, and any other instructions specific to their individual case. although research on mrsa abounds, there is a paucity of definitive guidelines for in-home treatment/contain- ment of mrsa, other than a few instructions for the public on the cdc ( b) web site. therefore, after reviewing all current, pertinent recommendations (cdc strategies for clinical management of mrsa in the community, march ; cdc’s management of multi-drug resistant organisms in healthcare, ; cdc guideline for hand hygiene in health-care settings, ; and the society for health care epidemiology of america guideline for pre- venting nosocomial transmission of multidrug-resistant strains of staphylococcus aureus and enterococcus, ), an easy patient teaching guideline was created. it is based on the latest available evidence for the inpatient populations of acute and nonacute settings to address possible best practice for home care of patients with mrsa infection. table outlines the components of this teaching protocol which is detailed in the remainder of this article. hand hygiene perhaps, the most powerful weapon in averting trans- mission of mrsa in the community as well as in health- care settings is proper hand hygiene. but how often do practitioners give patients concrete stepwise instructions for this basic but important task? hand washing instruc- tions encourage patients to develop techniques supported by the cdc ( ). in addition to the steps listed in table , patients should be advised when to wash their hands. hand hygiene should be performed after contact empowering your patients c.k. tisinger with a wound/adjacent wound surfaces, soiled clothing/ dressings, or after contacting shared surface that may be contaminated, for example, the family dog, doorknobs to bedrooms, or electric toothbrush handles. in addition to soap and water methods, hand hygiene can also be effectively performed using alcohol-based hand sanitiz- ing gels, which have gained popularity in the commu- nity. gel dispensers now exist in some public facilities, such as in may athletic clubs. cdc ( ) recommenda- tions for healthcare providers include avoidance of false nails, chipped polish and fingernails longer than one- quarter inch should also be included. inform patients that nails should be cleaned each time hands are washed and nails brushed or use nail sticks as necessary. make certain patients understand that harsh scrubbing of hands or nails is not recommended because it leads to skin breakdown and increased risk of the transmission of infection. any nailbrushes, nail files, or clippers from an infected patient (cdc, b) should be cleaned with either a : bleach solution (gorwitz jernigan, jernigan, & par- ticipants in the cdc-convened experts’ meeting on man- agement of mrsa in the community, ) or % isopropyl alcohol (muto et al., ). this recommended ratio for bleach cleaning solution equates to one tablespoon of household bleach to one quart of water. more importantly, patients need to think of the world outside their home as also posing a potential for reinfec- tion. they need to carry alcohol gels or foams with them in their automobile to use after sharing surfaces such as doorknobs, check out counters, money, or shopping cart handles. this portable hand washing method can be piv- otal in controlling the spread of mrsa. the recommended strength of alcohol gels, foams, or lotions should be % alcohol by weight. patients should know that they should continue rubbing hands together until the hand surfaces are dry and they must never use the alcohol preparations in place of soap and water when there is visible soiling of hands (cdc, ). lastly, they need to understand that the frequency of hand washing recommended will necessitate emollients for hands to avoid excessive drying or chapping (muto et al., ). this should be an oil-based product applied at least twice a day. explain that small cracks in skin tissue of hands will make them even more vulnerable to infection and protecting hands with an emollient is vital to success- fully avoiding further transmission of infections. practitioners may need to assist patients in identifying the shared surfaces that wounds and wound drainage may touch. these areas need frequent cleaning. parents need to recognize that shared toys, doorknobs, waste cans, refrig- erator, or cupboard doors may harbor these bacteria. frequently, tub and shower surfaces as well as bedding table patient teaching guidelines domain components hand washing wet hands before applying soap use warm, not hot, water wash hands using plain or preferably antimicrobial household soaps lather hands covering all surfaces for a total of s rinse hands well use towels to dry hands and turn off faucet single-use towels are highly recommended housekeeping segregate contaminated bedding or clothing recognize/clean shared surfaces (e.g., keyboards, remote controls) use moisture barriers on mattresses if wound drainage is present segregate patient bathroom from others’ use disinfect shared tub/showers with : bleach solution between users segregate contaminated cleaning utensils clean with disposable clothes or sponges disinfect toys regularly laundry wash contaminated laundry in hot water use bleach whenever possible in the laundry if unable to bleach, add disinfectant solutions per label instructions dry in dryer on hot setting rather than air drying wash contaminated items separate from other laundry before next load, run washer on hot, adding bleach. wounds wounds must be covered whenever drainage is present use barrier over all wounds when in close contact with people or pets cover all wounds before intimate contact minimize intimate contact with wounds on buttocks/ genitals/perineum sharing rules do not share towels do not share razors, clippers, tweezers, etc. do not share clothing with infected persons disinfect and air-dry shared equipment between uses keep cloth barrier between skin and shared equipment (e.g., weight bench) pet concerns provide regular bathing per veterinarian advice prompt veterinarian treatment for wounds/signs of infection in pet(s) wash hands after contact with pets avoid letting animals lick people keep pets away from wounds or any likely wound contaminated surfaces clean up any pet soiling promptly with hot water and bleach/disinfectants dispose of pet waste promptly to avoid zoonotic transmission of infection advise medical provider of any pets that are regularly in contact with you in relapsing/spreading mrsa infections, pet may need to be tested/treated make veterinarian aware of past or present mrsa infection in household c.k. tisinger empowering your patients can become reservoirs for spreading mrsa. once patients are aware of this, they can take actions to limit the number of exposed surfaces in the home. comingling with children, it may be necessary to stop sharing the bed with a sibling or to refrain from swimming in a shared pool until the children are declared free of all signs of mrsa by a clinician. in the case of very young children, it may benecessary to keepthem homefrom daycare centers to avoid contamination of others until active infections are resolved. if reusable cleaning towels or sponges must be used, advise the patient to soak them in the bleach solution mentioned earlier for at least min prior to hot water washing (hospital aims to put public in hot water, ). when available, using a clothes dryer is preferred to help kill bacteria prior to reusing such items elsewhere in the house (cdc, b). disinfecting other fomites when mrsa occurs in very young children, toys that cannot be decontaminated by using a : bleach solu- tion or household disinfecting detergents,laundered in hot water, or dried in a hot dryer should be thrown out. using the phrase, when in doubt throw it out, may help patients and their families to better identify and eliminate potentially colonized items/surfaces in their homes. encourage clients to discard makeup or bathing sponges that were used prediagnosis and to use only disposable alternatives for makeup during treatment until they are declared free of mrsa by their healthcare provider. like- wise loofahs and bath mitts or other devices from the bath or shower should not be used unless the patient is willing to disinfect these on a regular basis using aforementioned laundry and bleach techniques. if mrsa infections occur in facial areas, any makeup products or applicators used prior to or during diagnosis of mrsa infections should be discarded and new ones obtained after the mrsa has been eradicated. abstain- ing from wearing makeup with active mrsa infections is advised by this author as the products can become a reservoir for mrsa. in addition, makeup counters in department stores where the same pallet is used by multiple persons are also potential reservoirs of mrsa reinfection. gaining laundry leverage another issue in deterring transmission is handling of clothing and linens that may be exposed to drainage from wounds or have been in contact with dry wounds. hot water usage and hot dryer settings are recommended. patients need to be selective about which items in their wardrobe will be worn during this infectious state and keep exposure limited to those durable items that lend themselves to aforementioned disinfecting steps. again, encourage patients to remember the phrase, when in doubt, throw it out. make it explicitly clear that giving such items to charity would not be a sound idea because it would lead to further spread within the community. wound coverings and personal hygiene patients with mrsa must consider their wounds and body surfaces as transmission zones whether or not they see drainage and take appropriate precautions. wound covering becomes especially important in children too young to take on this responsibility. the infected patient should be encouraged to take hot showers daily and prior to any anticipated close contact with others such as sports or intimacy. wound coverings should also be changed at these times unless otherwise directed by the primary care provider. hot showers by the infected person prior to contact and clean wound dressings are recommended. hot showers for both partners after intimate contact are also recommen- ded. if the location of the source wound allows for a thin layer of clothing to remain intact during intimate contact, this is recommended, for example, leaving a tube sock on over the dressing of a calf or foot wound. wash razor heads in % isopropyl alcohol (muto et al., ) and allow to air dry after each use to disinfect them. using disposable razors during a time of infection would be best because the nares, pharynx, axilla, and perineum are body areas asso- ciated with mrsa colonization (gorwitz et al., , graham, lin, & larson, ). sharing rules strict adherence to no sharing rules must be made clear to all patients to avoid transmission or contraction of mrsa in the community setting. avoid contact with another person’s clothing or items of intimate personal hygiene. encourage hand washing after each contact with these items. team events such as football or fencing where equip- ment may be shared needs to be addressed (cdc, a). parents and members of all teams should be aware of how easily ca-mrsa can be transmitted to others through use of shared equipment if not properly cleaned. best practice would be not sharing of equipment; however, that is not always feasible. in sharing signs of affection, patients should be advised that it is safe to embrace their friends and loved ones but to have loved ones wash their hands after contact with the infected patient (cdc, ). lovemaking or kissing is empowering your patients c.k. tisinger permitted unless there is obvious risk of transmission such as mrsa infection from intimate sites such as mouth, face, or genitals/perineum (gorwitz et al., ). these situa- tions will need to be handled on an individual basis, with a personalized home care plan. practitioner challenges practitioners are faced with a complex battle in treating mrsa in the community. research by calfee et al. ( ) screened community contact persons and household indi- viduals of ha-mrsa infected or colonized individuals and found a % rate of transmission of the bacteria. this same study found that individuals in close contact with infected or colonized persons had . times the risk of becoming colonized with mrsa in the community setting. because infections caused by mrsa are not part of mandatory reporting in most of the united states, the incidence of overall mrsa and transmission rates of mrsa in the outpatient setting may be grossly underestimated in cur- rent research. practitioners need to become aware of the incidence and prevalence of mrsa in their own commu- nities as well as trends in antimicrobial resistance in order to be effective in managing their patients. research shows these trends are dependent upon geographic locations. local public health officials can lend invaluable support in these areas of inquiry. when to refer practitioners should inform patients of the possible need for further cultures, referrals to specialists, or for having other household members tested for mrsa infections or colonization. patients need to understand that infections involving joints, deep muscle, near the eyes/mastoid, or between mouth and nose need to be watched more closely and may require the involvement of an infectious disease specialist. practitioners should also recognize the need for infectious disease referrals when there is evidence of chronic or relapsing infections that are refractory to treat- ment. the spread of mrsa to new household members or significant others, or where an outbreak pattern presents among other contacts such as a sporting team is of greater concern. it is highly recommended that these cases be referred to an infectious disease specialist and possibly local public health officials if mandated by local health laws (muto et al., ). decolonization increasing numbers of experts are suggesting further vigilance involving tracking strains, resistance patterns, and prevalence of outbreaks, and identifying colonized individuals to gain control over mrsa both nationally and internationally (gorwitz et al., ). to date, no defin- itive data with repetitive studies of ca-mrsa have clearly defined distinct risk factors. no reliable clinical research can be cited to demonstrate the efficacy of decolonization of mrsa patients on a large scale (gorwitz et al.; muto et al., ). the cdc ( ) does not support random screening for all patients in the hospital setting. however, it does offer the option to healthcare providers for screen- ing high-risk patients prior to hospital admission. unusual collaboration practitioners may need to work with veterinarians in cases where relapsing infections occur and a pet coexists in the home. the pet should be ruled out as a possible reservoir and either the veterinarian or the local health department can collect isolates from the pet. these meas- ures are critical to maintain local surveillance of strains and their virulence and transmission rates. patients should tell any veterinary provider treating their pet that they are being treated for mrsa (cdc, b). in light of the newest pet research, they should also be advised to tell their veterinarian if their pet becomes ill. providers should maintain an awareness of the potential mrsa transmissions between animals and humans in all settings including pet therapy dogs, trained assistive ani- mals, and household pets. lastly, the practitioner must maintain a suspicion for an undetected source of ca- mrsa in a patient’s environment if relapsing or chronic infection ensues. in this case, the patient and cohorts need to be screened for nasal colonization. muto et al. ( ) recommend that an infectious disease consult be made for any attempts at eradicating colonization of mrsa or decolonization. conclusions the data reviewed in this discussion are only a small portion of existing literature on mrsa. there is additional research regarding transmission of mrsa between humans and domestic animals and this area is being further explored. healthcare providers will need to keep abreast of new research for indications of practice changes. the research on ca-mrsa is still in its early stages and few definitive data exist to date in this area. trends show that it has a disproportional incidence among children, homeless persons, and persons with hiv at this time. the reasons for this are not yet fully understood. the evidence-based data are clear; mrsa is not well controlled throughout the globe. finland and denmark are exceptions, where rates of infection in hospitals remain at or below % (muto et al., ). the highly vigilant programs used by healthcare systems in these countries c.k. tisinger empowering your patients have not, however, been supported or adopted by other larger and more densely populated countries. high prev- alence rates of mrsa ( %– %) have been found in certain areas of the united states and other countries among staphylococcus specimens isolated in hospital labo- ratories (zinn, westh, rosdahl, & sarisa study group, ). this clearly indicates the scope of the mrsa prob- lems among the inpatient populations globally. most experts agree that the approach to mrsa will require a multifaceted plan. this plan must include edu- cating those involved in the transmission of mrsa, bio- logical surveillance of outbreaks and trends to identify reservoirs and antimicrobial resistance patterns, and pos- sibly decolonization of selected individuals (muto et al., ; noggle et al., ; siegel et al., ; talbot et al., ). antibiotic stewardship is also a significant concern, and responsible prescribing habits must be emphasized (muto et al., ; siegel et al., ; talbot et al., ). the easy to follow patient teaching guideline described here addressed issues important to managing outpatients with mrsa infections and potential to curb the spread of mrsa. best practice has been identified, citing expert panels’ recommendations or current research. this pro- totype should serve as a useful tool in building patient teaching literature in the primary care setting. acknowledgment special thanks to elaine m. slocumb, phd, rn, bc, of the keiser university, college of nursing, and cheryl l. brandi, dnsc, arnp, np-c, of palma sola medical asso- ciates, for their mentorship and editorial assistance. references baggett, h. c., hennessy, t. w., leman, r., hamlin, c., bruden, d., reasonover, a., et al. 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( ). an international multicenter study of antimicrobial resistance and typing of hospital staphylococcus aureus isolates from laboratories in countries or states. microbial drug resistance, , – . c.k. tisinger empowering your patients a systematic review of randomized controlled trials of animal-assisted therapy on psychosocial outcomes annick maujean, christopher a. pepping and elizabeth kendall griffith health institute, griffith university, logan campus, queensland, australia abstract the use of animal-assisted interventions (aais) to achieve psy- chological benefits has expanded rapidly over the last few years. however, this is a vastly under-researched area, and the research to date has been largely descriptive, in the form of case studies, or has used only small groups of par- ticipants with no control condition. remarkably few studies have utilized gold standard randomized controlled designs. the aim of the present review was to examine the current state of the literature in regard to only randomized con- trolled trials (rcts) examining the psychosocial benefits of aais, which is a necessary step in order to move the field forward. a search of relevant data- bases was conducted in accordance with the preferred reporting items for systematic reviews and meta-analyses (prisma) guidelines. a total of , articles were identified at the outset; this was reduced to eight articles (involving studies), following the removal of duplicates ( , ), unrelated ti- tles ( , ), and those that did not meet inclusion criteria ( ). findings from the present review suggest that aais may be of benefit to a wide range of individuals, including children with autism, and adults with psychological disorders, including schizophrenia. however, further research using well-de- signed rcts is required to more definitively explore what specific types of aai are beneficial for specific populations. recommendations for future research are provided. keywords: animal-assisted activities, animal-assisted inter- vention, animal-assisted therapy, psychosocial outcomes, randomized controlled trial the last few years have seen a rapid expansion in the use of animal-assisted interventions (aais). these use a variety of an- imals (e.g., horses, domestic pets, farm animals) to achieve psychological benefits in a wide range of populations. aais consist of a n th ro zo ö s d o i: . / x � anthrozoös volume , issue reprints available photocopying © isaz pp. – directly from permitted printed in the uk the publishers by license only address for correspondence: dr. annick maujean, phd, centre for national research on disability and rehabilitation, griffith health institute, griffith university, university drive, meadowbrook, qld , australia. e-mail: a.maujean@griffith.edu.au ❖ az ( )-text_layout / / : am page two types of intervention: “animal-assisted therapy” (aat), a goal-directed intervention in which an animal is an integral part of a treatment process to achieve specific goals, and “an- imal-assisted activities” (aaa), a less structured intervention which aims to achieve positive psychological outcomes through creating a positive environment with animals (delta soci- ety n.d.). although aais have incorporated a wide range of animals (e.g., breitenbach et al. ), the most common programs have focused on horses (trotter et al. ; burgon ), farm animals (e.g., pedersen et al. ), or domestic pets (e.g., chu et al. ). there is generally agreement that aais lead to positive psychological outcomes (e.g., nimer and lundahl ; wells ; ernst ). however, this is a vastly under-researched area in need of well-designed randomized controlled trials (rcts). research pertaining to the psychological benefits of aais has been largely descriptive in the form of single-case studies, small groups of participants with no control condition, or non-randomized inter- ventions that included a control group (smith-osborne and selby ). remarkably few studies included in these previous reviews have utilized gold-standard, randomized controlled designs. several researchers have published reviews (garrity and stallones ; hooker, hol- brook freeman and stewart ; filan and llewellyn-jones ; barker and wolen ; decourcey, russell and keister ; rossetti and king ) and meta-analyses (nimer and lundahl ; souter and miller ) about the psychological benefits of aais. hooker et al. ( ) carried out an historical review of the preceding years of research involving pet therapy. in particular, they focused on the use of domestic animals for psychosocial benefits and reported increasing levels of popularity and interest among researchers over this period. the studies reviewed by hooker et al. ( ) were largely single-case studies, or uncontrolled trials, which provide some initial, promising support for the use of aais with domestic animals. however, as the authors stated, there is more work to be done in regard to establishing the efficacy of these interventions. filan and llewellyn-jones ( ) conducted a review of the evidence pertaining to the use of aai for dementia. the large majority of studies investigating the use of aai to address the behavioral and psychological symptoms of dementia were small-scale, uncontrolled studies, and the authors noted several methodological limitations with regards to the individual stud- ies. specifically, the authors highlighted the need for well-designed, randomized controlled trials to investigate the beneficial effects of aais. nonetheless, filan and llewellyn-jones ( ) concluded that there is some initial evidence that aais have beneficial effects on symptoms of dementia, with some small studies indicating that the presence of a dog may reduce agitation and enhance sociability in individuals with dementia. rossetti and king ( ) reviewed the evidence for the effectiveness of aais (specifically, aat) with psychiatric patients, concluding that aais have positive effects on a wide range of psychological and social outcomes, including reductions in anger, anxiety, depression, and general distress, and beneficial effects on socialization. decourcey, russell and keister ( ) reviewed the literature pertaining to the psychological and physiological health benefits of aais for critically ill patients. multiple studies were identified that found positive psychological or physiological markers of health in critically ill patients. the authors concluded that aais had the potential to reduce stress, anxiety, and boredom, as well as improve mood and phys- iological markers of well-being such as reduced heart rate and blood pressure. although they found no research suggesting aai was not efficacious, it was noted that aai may not be beneficial for everyone. a systematic review of randomized controlled trials of animal-assisted therapy… a n th ro zo ö s az ( )-text_layout / / : am page souter and miller ( ) conducted a meta-analysis of the efficacy of aais (both aaa and aat) on depression. it consisted of only studies that utilized a control group and random assignment, as well as a sufficient measure of depression. further, in order for studies to be in- cluded in the meta-analysis, the studies had to report sufficient information to allow for effect sizes (i.e., a statistical indication of the strength of the effect of treatment) to be calculated. five studies were included in the analysis, and the results revealed that, overall, there was a statisti- cally significant moderate effect size, showing a reduction in depressive symptomatology. that is, there was compelling evidence that the aais were associated with improvements in depres- sion, as the only studies included in the analyses were well-designed, randomized controlled tri- als. a meta-analysis conducted by nimer and lundahl ( ) revealed that aais were effective across several domains. specifically, there were large effect sizes for behavioral difficulties and symptoms of autism, moderate effect sizes for indices of wellbeing, and moderate effect sizes for behavioral and medical indicators. importantly, four studies in- cluded in the review compared aais with active interventions rather than a wait-list control group, demonstrating that aai was as effective as the alternative intervention, and in some cases more effective (holcomb and meacham ; haughie, milne and elliot ; bernstein, friedmann and malaspina ; marr et al. ). however, only one of these studies (marr et al. ) used a randomized controlled design. in brief, there is some initial evidence that aais may be beneficial across a wide range of populations and domains. however, conclusions are limited as much of the research in this area has been descriptive, or has consisted of uncontrolled trials. the aim of the present re- view was to examine the current state of the literature since previous reviews (e.g., nimer and lundahl ). an examination of the current evidence-base for animal-assisted interventions is a necessary step to move the field forward. the national health and medical research council (nhmrc ) guidelines suggest that the highest level of evidence (level i evidence) is a systematic review of level ii studies (i.e., well-designed, randomized controlled trials). thus, in the present review, we included only randomized controlled trials investigating the effects of aais on psychosocial outcomes. methods selection of studies to review the literature since these previous reviews, we searched for articles on aais published between and . keyword searches were conducted of six databases (psycinfo, medline, proquest, scopus, web of science, and cinahl). in addition, the reference lists contained in the retrieved articles were examined for any additional articles that warranted inclusion. keywords relevant to the present review used for the search were “animal-assisted therapy,” “pet therapy,” “equine facilitated learning,” “hippotherapy,” or “therapeutic horse- riding,” paired with key terms “well-being,” “health,” “recovery,” “rehabilitation,” “healing,” “treatment,” “intervention,” “psychotherapy,” or “illness.” in line with the preferred reporting items for systematic reviews and meta-analyses (prisma) guidelines (liberati et al. ), the results of the systematic review are presented in figure . the initial search found , articles, which was reduced to , when duplicates were removed. an initial review of the abstracts was conducted to remove articles that were clearly unrelated to aais, or were not written in english, leaving articles. the abstracts of these studies were then reviewed by two independent raters, and articles were retained for the maujean et al. a n th ro zo ö s az ( )-text_layout / / : am page systematic review if they met the following inclusion criteria: ) only original published journal articles that investigated the psychological or social out- comes of aais were included; ) an aai was provided and described as part of the study; ) the study design was a randomized controlled trial; ) the article was specific to aais, rather than a combination of therapies or pet ownership. results after exclusion of articles, only eight articles remained, describing seven studies. details of these articles are displayed in table . in line with guidelines provided by the nhmrc ( ), only studies meeting criteria for level ii evidence (i.e., randomized controlled trials) were i ncluded in the present review. all studies reported in the review utilized some form of psychometric outcome measure. however, there was variation in regard to the extent to which the various interventions were shown to be beneficial. sample sizes of the studies ranged from small (n = ) to relatively large a systematic review of randomized controlled trials of animal-assisted therapy… figure . the search strategy. , articles identified through database searching additional articles identified through other sources did not meet inclusion criteria (n = ) • unrelated to aai (n = ) • non-randomized controlled trial (n = ) • animals other than domestic animals, farm animals, equines, or not specific to aai (n = ) • books, book chapters, conference presentations, and dissertations (n = ) additional articles identificed through checking reference lists of articles (n = ) , articles with clearly unrelated titles excluded full-text articles assessed for eligibility articles meeting inclusion criteria articles included in systematic review, reporting studies , articles remained after duplicates removed a n th ro zo ö s az ( )-text_layout / / : am page ta b le . s tu d ie s in cl u d ed in t h e re vi ew . a u th o r (y e a r) s a m p le c h a ra c te ri st ic s ta rg e te d in te rv e n tio n l e n g th n u m b e r a n im a ls o u tc o m e s f in d in g s (i = in te rv e n tio n ; b e h a vi o rs ty p e o f in te r- o f m e a su re s c = c o n tr o l) ve n tio n w e e ks b as s, d uc ho w ny an d l la b re ( ) b er ge t, e ke b er g an d b ra as ta d ( ) ; b er ge t e t a l. ( ) c hu e t a l. ( ) d av is e t a l. ( ) jo hn so n et a l. ( ) d v = d og v is it gr ou p ; f h v = f rie nd ly h um an v is it gr ou p ; q r = q ui et re ad in g gr ou p . c o n tin u e d … maujean et al. n = (i = ; c = ) ; c hi ld re n w ith a ut is m n = (i = ; c = ) ; a d ul ts w ith p sy ch ia tri c d is or d er s n = (i = ; c = ) ; a d ul t i np at ie nt s w ith sc hi zo p hr en ia n = (i = ; c = ) ; c hi ld re n w ith ce re b ra l p al sy n = (d v = ; fh v = ; q r = ) ; p at ie nt s re ce iv in g no n- p al lia tiv e ra d ia tio n th er ap y s oc ia l fu nc tio ni ng s el f- ef fic ac y, co p in g ab ilit y, q ua lit y of lif e, d ep re ss io n, an xi et y s el f- es te em , se lf- d et er m i- na tio n, s oc ia l su p p or t, p sy ch ia tr ic sy m p to m s q ua lit y of li fe , gr os s m ot or fu nc tio n, he al th s ta tu s m oo d s ta te , se lf- p er ce iv ed he al th , se ns e of co he re nc e t h er ap eu tic ho rs e- rid in g (h ip p ot he ra p y) fa rm a ni m al - as si st ed th er ap y a a i ( ca ni ne ) th er ap eu tic ho rs e- rid in g (h ip p ot he ra p y) a a i ( ca ni ne ) ho ur p er w ee k ho ur s tw ic e a w ee k m in ut es p er w ee k to m in ut es w ee kl y m in - ut es th re e tim es p er w ee k h or se s c ow s, ca ttl e, sh ee p , ho rs es d og s h or se s d og s s oc ia l r es p on si ve ne ss s ca le g en er al is ed s el f- e ffi ca cy s ca le ; c op in g s tra te gi es s ca le o f t he p re ss ur e m an ag em en t i nv en to ry , q ua lit y of l ife s ca le , s p ie lb er ge r s ta te -t ra it a nx ie ty in ve nt or y; b ec k d ep re ss io n in ve nt or y a d ap ta tio ns o f m ea su re s ta p p in g se lf- es te em ; se lf- d et er m in at io n; s oc ia l su p p or t; p sy ch ia tr ic sy m p to m s (p os iti ve a nd ne ga tiv e sy m p to m s of sc hi zo p hr en ia ); an d em ot io na l s ym p to m s. c er eb ra l p al sy q ua lit y of li fe q ue st io nn ai re fo r ch il d re n; k id s c r e e n ; c hi ld h ea lth q ue st io nn ai re ; g ro ss m ot or f un ct io n m ea su re . p ro fil e of m oo d s ta te s; s el f- p er ce iv ed h ea lth q ue st io nn ai re ; o rie nt at io n to l ife q ue st io nn ai re ; r e- se ar ch er -d er iv ed e xi t q ue st io nn ai re . im p ro ve d s oc ia l m ot iv at io n, se ns or y se ek in g, s en so ry s en si tiv ity , an d d ec re as ed s ed en ta ry b eh av io r, in at te nt io n an d d is tra ct ib ilit y re la tiv e to c on tro l g ro up . im p ro ve d s el f- ef fic ac y an d c op in g ab ilit ie s, a nd d ec re as ed d ep re ss io n an d a nx ie ty re la tiv e to c on tro l fo llo w in g in te rv en tio n. im p ro ve d s el f- es te em a nd se lf- d et er m in at io n, a nd d ec re as ed p os iti ve s ym p to m s of s ch iz op hr en ia an d e m ot io na l s ym p to m s re la tiv e to c on tr ol . a fte r co nt ro llin g fo r tim e d at a, im p ro ve m en t i n fa m ily c oh es io n. n o p os iti ve e ffe ct s fo r m ai n ou tc om es . n o si gn ifi ca nt im p ro ve m en ts o n an y va ria b le a cr os s th e th re e co nd iti on s. p ar tic ip an ts r at ed d og v is its a s le ss he lp fu l t ha n hu m an v is its a nd th e re ad in g co nd iti on . a n th ro zo ö s az ( )-text_layout / / : am page a systematic review of randomized controlled trials of animal-assisted therapy… a n th ro zo ö s n = (i = ; c = ) ; a d ul ts w ith d ep re ss io n n = (i = ; c = ); a d ul t i np at ie nt s w ith sc hi zo p hr en ia d ep re ss io n, st at e an xi et y, se lf- ef fic ac y p sy ch ia tr ic sy m p to m s, so ci al co m p et en ce , q ua lit y of li fe fa rm a ni m al - as si st ed th er ap y a a i ( ca ni ne ) . to ho ur s tw ic e a w ee k m in ut es tw ic e a w ee k c at tle , ho rs es , c at s, d og s, r ab b its d o g s b ec k d ep re ss io n in ve n to ry ; s ta te -t ra it a n xi et y in ve n to ry -s ta te s u b sc al e; g en er al is ed s el f- e ffi ca cy s ca le . p os iti ve a nd n eg at iv e s yn d ro m e s ca le ; li vi ng s ki lls p ro fil e; w h o q ua lit y of l ife a ss es sm en t. in cr ea se s in s el f- ef fic ac y, a n d d ec re as ed d ep re ss io n a n d s ta te an xi et y in t h e in te rv en tio n co n d iti o n , an d n o t in t h e co n tr o l co n d iti o n . tr ea tm en t g ro u p im p ro ve d in p o si - tiv e an d n eg at iv e sy m p to m s o f sc h iz o p h re n ia , an d q u al ity o f l ife re la te d t o s o ci al r el at io n sh ip s. c o n tr o l g ro u p s o n ly im p ro ve d in p o si tiv e sy m p to m s an d g en er al s ym p to m s o f sc h iz o p h re n ia . ta b le . s tu d ie s in cl u d ed in t h e re vi ew . c o nt in ue d … a u th o r (y e a r) s a m p le c h a ra c te ri st ic s ta rg e te d in te rv e n tio n l e n g th n u m b e r a n im a ls o u tc o m e s f in d in g s (i = in te rv e n tio n ; b e h a vi o rs ty p e o f in te r- o f m e a su re s c = c o n tr o l) ve n tio n w e e ks p ed er se n et a l. ( ) v illa lta -g il e t a l. ( ) d v = d og v is it gr ou p ; f h v = f rie nd ly h um an v is it gr ou p ; q r = q ui et re ad in g gr ou p . az ( )-text_layout / / : am page (n = ). studies obtained investigated the effects of aais for several populations: including individuals with schizophrenia, depression, anxiety, and cancer. the interventions differed in terms of length and standardization. to manage this variability, we examined the outcome of these interventions based on the type of animal used in the therapy. canine three studies were identified in the present review that examined the effects of an aai with canines. sample sizes in each of these three studies were small (n = to n = ). across the three studies there were participants in the canine interventions, and participants in the control conditions (did not include contact with dogs). chu et al. ( ) conducted a study to evaluate the effects of aaa on self-esteem, control of activities in daily living, and other psycho-physiological aspects. thirty taiwanese individ- uals, who were inpatients with schizophrenia, were randomly assigned to either a -month weekly aai (specifically, aaa) with dogs (n = ) or to a control group (n = ) who received treatment as usual. the aai sessions were generally held in the hospital garden for min- utes each week. animal-assisted activities included learning to walk the dogs over obstacles, carrying the dogs, playing “throw and fetch” games with the dogs, and learning to relate to the dogs. group discussions were held to debrief and reflect on patients’ experiences and feelings. participants in the aai displayed increased self-esteem, self-determination, and decreased emotional symptoms and positive symptoms of schizophrenia (p = . ), whereas no such changes emerged in the control condition. thus, results indicate that a relatively short-term aai can have beneficial effects on both emotional well-being and symp- toms of schizophrenia. however, it is important to note that no follow-up assessments were conducted to assess the durability of the effects. in addition, the control group was a treatment-as-usual group, as opposed to an active control group which received a credible intervention. it therefore remains unclear whether the beneficial effects were specific to this intervention or would have been observed following any structured activity. villalta-gil et al. ( ) also examined the efficacy of an aai which included a trained therapy dog with a group of inpatients with chronic schizophrenia. this study aimed to as- sess the effectiveness of this intervention program in decreasing levels of positive and negative symptoms, and improving levels of social competence and quality of life. the in- tervention was a form of the integrated psychological treatment (ipt) (brenner et al. ) that was adapted to allow for dogs to be incorporated into the treatment. twenty-one inpatients with a diagnosis of schizophrenia were randomly assigned to either the ipt that included activities with dogs (ipt-d) (n = ), or to the ipt which did not include activities with dogs (n = ). twenty-five sessions were provided to participants twice-weekly, each session lasting for minutes. participants in the ipt group significantly improved in positive (p = . , d = . ) and general symptoms of schizophrenia (p = . , d = . ). in contrast, participants in the ipt-d group improved in social contact (p = . , d = – . ), positive (p = . , d = . ) and negative (p = . , d = . ) symptoms of schizophre- nia, and quality of life related to social relationships (p = . , d = – . ). these findings suggest that dog-assisted therapy may provide broader beneficial effects when compared with ipt treatment alone. surprisingly, however, social behavior significantly worsened in the ipt-d group, possibly because the intervention did not specifically focus on these issues. there were no differences between the two groups on any of the outcome measures, both before and after treatment. a strength of this study is that it compared two interventions maujean et al. a n th ro zo ö s az ( )-text_layout / / : am page that were identical except for the inclusion of a dog and activities relating to the dog. however, again, long-term follow-up assessments are needed. in the final and most controlled rct, johnson et al. ( ) explored the effects of aaa on mood, fatigue, and perceptions of health in cancer patients. thirty individuals currently receiving non-palliative radiation treatment were randomly assigned to either dog visits (n = ), human visits (n = ), or quiet reading sessions (n = ). each intervention consisted of three -minute sessions per week for four weeks. in the dog-visit group, a dog handler brought two female dogs to visit patients, and the patient interacted with the dog. in the human-visit condition, a friendly person (e.g., volunteer nursing student) engaged with the patient in superficial “small talk,” and not therapeutic counseling. finally, in the reading group, participants were provided with a selection of magazines that were unrelated to health, cancer, or animals. there were no statistically significant improvements in any of the three intervention conditions with regards to tension, anger, confusion, or fatigue. however, participants tended to rate the sessions as helpful (dog visits, %; human visits, %; read- ing, %). interestingly, participants in the dog-visit condition rated the usefulness of the intervention lower than the other two interventions. comparison between this intervention and all other interventions was not possible as it was less structured and active (i.e., passive visits with a dog). this study suggests that human contact is perceived as more meaning- ful than animal contact, but that passive animal contact may not be as useful as active engagement. however, it is important to note that the sample size (n = ) was relatively small and may have lacked statistical power to detect an effect. farm animals two studies were identified that examined the effects of an aai with farm animals. in one study, various aspects of psychological outcomes of the same rct were reported in two separate publications (berget, ekeberg and braastad ; berget et al. ), and therefore this intervention is treated as one study in the present review. sample sizes in the two studies differed substantially, with one study examining the efficacy of the intervention in a relatively small sample (n = ; pedersen et al. ), and the other using a large sample (n = ; berget, ekeberg and braastad ; berget et al. ). overall, there were participants in the animal interventions, and participants in the control conditions. pedersen et al. ( ) explored the efficacy of a -week aaa intervention involving farm animals on self-efficacy, depression, and anxiety in individuals with depression. twenty-nine individuals suffering depression were randomly assigned to either the active intervention (n = ) or to a wait-list control condition (n = ). participants in the farm-animal intervention condition worked and interacted with the animals twice weekly across the -week period, for between . to hours. activities included grooming, feeding, milking, and taking care of the farm animals. following the intervention, participants displayed reduced depression (p = . , η = . ) increased self-efficacy (p = . , η = . ), and although the decrease in state anxiety was not significant (p = . , η = . ), the effect size was large. these benefits were maintained at follow-up, whereas in the control condition no such changes were evi- dent. there were no differences between groups in these outcomes. it is possible that the rel- atively small sample (n = ) may have limited the extent to which differences between the groups could be detected. however, it is clear that beneficial effects emerged in the interven- tion condition and not in the control condition. an important strength of the study is that fol- low-up assessments were conducted at three months. a systematic review of randomized controlled trials of animal-assisted therapy… a n th ro zo ö s az ( )-text_layout / / : am page in two separate reports of the same study, berget, ekeberg and braastad ( ) and berget et al. ( ) evaluated the effectiveness of an aaa intervention involving farm animals to decrease levels of depression and anxiety, and improve levels of self-efficacy, coping abili- ties, and quality of life. ninety individuals with a psychiatric disorder (schizophrenia, mood dis- order, personality disorder, or anxiety disorder) were randomly assigned to either weeks of aaa with farm animals (n = ) or to a control group who received treatment as usual (n = ). the aaa intervention consisted of twice-weekly visits to a farm to work with the animals; each session lasted approximately hours. activities included patting, washing, and grooming the animals, as well as moving them and riding horses. in the first study, participants in the aaa condition displayed a significant increase in self-efficacy (p = . , η = . ) and coping abil- ities (p = . , η = . ) at the six-month follow-up, whereas no such changes were ob- served in the control group (berget, ekerberg and braastad ). in the second study, participants in the aaa group also reported significantly lower levels of anxiety (p = . , η = . ) and depression (p = . , η = . ) at the six-month follow-up. however, unex- pectedly, depression also reduced significantly in the control condition during the six-month pe- riod (p = . , η = . ), suggesting that the intervention may not have been contributing to this particular observed change (berget et al. ). in brief, the findings suggest that the aaa intervention was effective in alleviating symptoms of anxiety and improving coping and self-efficacy among individuals with a psychiatric diagnosis, though the effects on depression were somewhat less clear. equine only two studies focused on aais with equines. sample sizes in the two studies differed sub- stantially, with one study examining the efficacy of the intervention in a relatively small sample (n = ; bass, duchowny and llabre ), and the other using a large sample (n = ; davis et al. ). overall, there were participants in the animal interventions, and participants in the control conditions. bass, duchowny and llabre ( ) investigated the efficacy of a therapeutic horse riding intervention on the social responsiveness of children with autism (n = ). thirty-four children were randomly allocated to either an intervention group (n = ) or a wait-list control group (n = ). the intervention group participated in weekly -hour sessions involving various horse activities (e.g., riding, horsemanship activities), to facilitate the development of verbal communication and social skills. children who participated in the therapeutic riding interven- tion displayed greater social motivation (p < . , η = . ), sensory seeking (p < . , η = . ), sensory sensitivity (p < . , η = . ), and less sedentary behavior (p < . , η = . ), and inattention and distractibility (p < . , η = . ) following the intervention. in contrast, participants in the control group did not display any significant behavioral changes from pre- to post-assessment. although no follow-up assessments were reported, the strengths of this study were the inclusion of a control group, the use of random assignment, the implementation of a structured intervention with clear aims and goals, and the use of as- sessments that adequately measured these specific domains. in a much larger study, davis et al. ( ) randomly assigned children with cerebral palsy to either a -week therapeutic horse-riding intervention (n = ) or to a wait-list control condition (n = ). participants in the therapeutic horse-riding intervention group participated in activities designed to emphasize various physical movements to improve postural control, balance, trunk strength, and trunk/pelvis dissociation. children in the wait-list control group maujean et al. a n th ro zo ö s az ( )-text_layout / / : am page were requested to continue with their daily/weekly routine. no significant differences emerged between the two groups except for an improvement in family cohesion in the therapeutic rid- ing condition (p < . ). the relatively large sample size is a significant strength of this study, as it provided adequate statistical power to detect an effect if one was present. however, it is important to note that the psychological measures administered were broad measures of quality of life which may not detect the more specific changes one might expect from an equine-assisted therapy program. positive changes in family cohesion are important and indicate the potential for longer term benefits from aais. discussion in this review of seven rcts, we assessed the current state of the evidence regarding the psychological benefits of aais. all but one study (johnson et al. ) reported at least some beneficial psychological effects of aais. three studies found beneficial psychologi- cal effects with farm animal-assisted therapy (berget, ekeberg and braastad ; berget et al. ; pedersen et al. ), although two of these studies reported findings using the same sample. two studies reported positive outcomes of canine-assisted interventions (chu et al. ; villalta-gil et al. ), and two found beneficial effects of aais with horses (bass, duchowny and llabre ; davis et al. ). the only non-significant study (johnson et al. ) involved a minimal, short-term, unstructured intervention with cancer patients in active radio therapy. it is not surprising to find that this intervention was unsuccessful. importantly even unstructured human interaction at the same frequency and intensity was not helpful. methodological considerations as the studies included in the present review were rcts, the design enabled stronger con- clusions to be drawn. however, there was substantial variability among these studies in regard to quality. for instance, only two studies (johnson et al. ; villalta-gil et al. ) utilized an active control group which participated in a comparison intervention as opposed to a wait- list control condition or treatment as usual. johnson et al. ( ) found no beneficial effects of aai, whereas villalta-gil et al. ( ) found reductions in negative symptoms of schizophrenia, and an increase in quality of life and relationships in the aai group relative to the control condition. without more research utilizing active control groups, it remains unclear whether simply engaging in some form of activity is responsible for the positive outcome, or whether the beneficial effects are specific to the aai. there was also considerable variation in the measures used to assess psychological out- comes between the studies. specifically, some studies used measures that tapped specific constructs, such as self-efficacy (e.g., berget, ekeberg and braastad ; pedersen et al. ) and self-esteem (e.g., chu et al. ), whereas others used broader measures, such as overall quality of life for children with cerebral palsy (e.g., davis et al. ). when more specific measures were used, positive changes were identified, suggesting that aais may have targeted effects on psychosocial outcomes. it is important that the measures selected to assess outcomes are theoretically in line with the aims and scope of the intervention. a brief aai may not be expected to enhance overall quality of life, particularly when life circumstances are challenging (e.g., davis et al. ). however, it could be reasonably expected to en- hance self-efficacy, positive affect, and coping skills if animal experiences are appropriately structured and supported. a systematic review of randomized controlled trials of animal-assisted therapy… a n th ro zo ö s az ( )-text_layout / / : am page the only study that used individual sessions as opposed to group sessions (johnson et al. ) found no beneficial effects as a result of dog-assisted therapy. however, the sample was small and the intervention was shorter in duration ( minutes, three times per week, for four weeks) than those described in other studies both in terms of session duration and length of treatment. the next shortest intervention was eight weeks for minutes per week (chu et al. ) and was associated with significant increases in self-esteem, self-determination, as well as decreases in positive symptoms of schizophrenia. thus, it is unclear whether the null findings obtained by johnson et al. ( ) may be attributed to a lack of efficacy of aai with dogs, which is unlikely given the findings of other well-controlled studies, individual sessions (as opposed to group sessions), inadequate dosage, or simply lack of power. con- sistent with the proposition that dose effects are important, villalta-gil et al. ( ) examined the effects of group sessions of aai with dogs across sessions and found that the inter- vention was successful in reducing negative symptoms of schizophrenia, which are traditionally more resistant to therapy. thus, it is possible that longer duration aais may be necessary to achieve significant change. this potential dose effect may be an important issue to consider in future research. all of the studies in the present review assessed psychosocial functioning before and after the intervention. however, only three studies (berget, ekeberg and braastad ; berget et al. ; pedersen et al. ) reported follow-up assessments beyond the end of treatment. it is critically important that long-term follow-up assessments are conducted, as it is useful to know how long the positive effects last following the intervention. it may also be that some beneficial effects are either not observed until sometime after the intervention has finished, or that the beneficial effects may continue to develop post-intervention. an important issue to consider is the construct validity of aais, namely whether the ther- apeutic improvement is due specifically to the presence of the animal or whether it is due to the more generic aspect of the intervention (e.g., being presented with a novel situation, being placed in a new environment, and being more physically active). in comparison to more traditional interventions, aai provides a new and often exciting experience for partici- pants, hence these types of intervention may be prone to novelty effects. according to marino ( ), in order to decrease the impact of novelty effects during aais, control groups must use similarly new and exciting stimuli, or the studies should have longer-term follow- up assessments, after the excitement and novelty of the experimental condition has decreased. in the present review, none of the studies included a control group exposed to a comparable activity to control for the novelty effect associated with the aai. three stud- ies administered follow-up assessments (berget, ekeberg and braastad ; berget et al. ; pedersen et al. ), which demonstrated that the novelty effects associated with aai may have been short-lived. specifically, the positive outcomes associated with the aai were sustained over time. the studies in this review were conducted using relatively small sample sizes, ranging from (villalta-gil et al. ) to (davis et al. ). only one study (davis et al. ) reported a statistical power analysis that confirmed that a sufficient sample size (to detect an effect if it was present) was used. this study found that the aai was effective in improving fam- ily cohesion. finally, only five of the studies in the present review (bass, duchowny and llabre ; berget, ekeberg and braastad ; berget et al. ; pedersen et al. ; villalta- gil et al. ) reported or provided sufficient information to calculate an effect size (i.e., eta squared statistics) to estimate the strength of the intervention effect. these effect sizes maujean et al. a n th ro zo ö s az ( )-text_layout / / : am page suggested that aai was effective in improving psychosocial outcomes across a wide range of populations. conclusion the aim of the present review was to identify the conclusions that could be drawn from only randomized controlled trials of aai in terms of its psychosocial benefit. two studies found clear evidence that aai (canine) was beneficial for individuals with severe psychological disorders (chu et al. ; villalta-gil et al. ). importantly, villalta-gil et al. ( ) found compelling evidence that reductions in the persistent negative symptoms of schizophrenia could be attributed to the dog. we also found that aai using farm animals may be beneficial for indi- viduals with depression (pedersen et al. ) and other forms of psychiatric disorders (berget, ekeberg and braastad ; berget et al. ). in contrast, there was no evidence for the use of canine-assisted therapy with cancer patients (johnson et al. ), and little evidence for the use of equine-assisted therapy for children with cerebral palsy, other than on family cohesion (davis et al. ). however, for children with autism, equine-assisted therapy appeared to have beneficial effects on social responsiveness, suggesting that equine programs may influence a range of social outcomes (bass, duchowny and llabre ). however, given the fact that positive outcomes were associated with group-based programs only, these changes may be attributed to a more generic social process. there is a great need for well-designed rcts that explore the psychosocial benefits of aais through the inclusion of active control groups, follow-up assessments, and adequate information pertaining to sample size and effect size estimation. it is also important that the measures used in these studies to assess outcome are not only psychometrically sound, but that they also adequately assess outcomes one would expect to change as a result of aais. there is also a need to assess the efficacy of aai interventions in a wide range of populations, as our review has suggested that differential effects may be found depending on the population under investigation. it is important to note that given the wide range of terms used in the field to refer to various forms of aai (e.g., aaa, aat, pet therapy, dog-assisted therapy, canine-assisted therapy, farm animal-assisted therapy), it is possible that similar studies using more precise language were not detected within the present systematic search. however, close inspection of reference lists for additional studies that might warrant inclusion revealed no additional studies. thus, although it seems unlikely that there are additional studies that were not detected in the present review, this possibility needs to be acknowledged. in summary, although there was evidence that aais may be of benefit to a wide range of individuals, further research is required to more definitively explore what specific types are beneficial for specific populations. references barker, s. b. and wolen, a. r. . the benefits of human–companion animal interaction: a review. journal of veterinary medical education : – . doi: . /jvme. . . . bass, m. m., duchowny, c. a. and llabre, m. m. . the effect of therapeutic horseback riding on social functioning in children with autism. journal of autism developmental disorder ( ): – . doi: . /s - - - . berget, b., ekeberg, Ø. and braastad, b. o. . animal-assisted therapy with farm animals for persons with psychiatric disorders: effects on self-efficacy, coping ability and quality of life, a randomized controlled trial. clinical practice and epidemiology in mental health ( ): – . doi: . / - - - . a systematic review of randomized controlled trials of animal-assisted therapy… a n th ro zo ö s az ( )-text_layout / / : am page berget, b., ekeberg, Ø., pedersen, i. and braastad, b. o. . animal-assisted therapy with farm animals for persons with psychiatric disorders: effects on anxiety and depression, a randomized controlled trial. occupational therapy in mental health ( ): – . doi: . / x. . . bernstein, p. l., friedmann, e. and malaspina, a. . animal-assisted therapy enhances resident social interaction and initiation in long-term care facilities. anthrozoös ( ): – . doi: . / . breitenbach, e., stumpft, e., fersen, l. v. and ebert, h. . dolphin-assisted therapy: changes in interaction and communication between children with severe disabilities and their caregivers. anthrozoös ( ): – . doi: . / x . brenner, h., roder, v., hodel, b., kienzie, n., reed, d. and liberman, r. . integrated psychological therapy for schizophrenic patients. seattle: hoegreffe & huber. burgon, h. l. . “queen of the world”: experiences of “at-risk” young people participating in equine-assisted learning/therapy. journal of social work practice ( ): – . doi: . / . . . chu, c. i., liu, c. y., sun, c. t. and lin, j. . the effect of animal-assisted activity on inpatients with schizophrenia. journal of psychosocial nursing and mental health service ( ): – . doi: . / - - . davis, e., davies, b., wolfe, r., raadsveld, r., heine, b., thomason, p. and graham, h. k. . a randomized controlled trial of the impact of therapeutic horse riding on the quality of life, health, and function of children with cerebral palsy. developmental medicine and child neurology ( ): – . doi: . /j. - . . .x. decourcey, m., russell, a. c. and keister, k. j. . animal-assisted therapy. dimensions of critical care nursing ( ): – . doi: . /dcc. b e e c a. delta society n.d. about animal-assisted activities and animal-assisted therapy. http://www.deltasociety. org/animalassistedactivitiestherapy. accessed on july , . ernst, l. . animal-assisted therapy: using animals to promote healing. nursing ( ): – . filan, s. l. and llewellyn-jones, r. h. . animal-assisted therapy for dementia: a review of the literature. international psychogeriatrics ( ): – doi: . /s . garrity, t. and stallones, l. . effects of pet contact on human well-being. in companion animals in human health, – , ed. c. wilson and d. turner. thousand oaks, ca: sage. haughie, e., milne, d. and elliott, v. . an evaluation of companion pets with elderly psychiatric patients. behavioral psychotherapy ( ): – . doi: . /s . holcomb, r. and meacham, m. . effectiveness of an animal-assisted therapy program in an inpatient psychiatric unit. anthrozoös ( ): – . doi: . / . hooker, s. d., holbrook freeman, l. and stewart, p. . pet therapy research: a historical review. holistic nursing practice ( ): – . johnson, r., meadows, r., haubner, j. and sevedge, k. . animal-assisted activity among patients with cancer: effects on mood, fatigue, self-perceived health, and sense of coherence. oncology nursing forum ( ): – . doi: . / .onf. - . liberati, a., altman, d. g., tetzlaff, j., mulrow, c., gotzsche, p. c., ioannidis, j. p. a., clarke, m., devereaux, p. j., kleijnen, j. and moher, d. . the prisma statement for reporting systematic reviews and meta- analyses of studies that evaluate healthcare interventions: explanation and elaboration. british medical journal (b ). doi: . /bmj.b . marino, l. . construct validity of animal-assisted therapy and activities: how important is the animal in aat? anthrozoös : – . doi: . / x . marr, c. a., french, l. thompson, d., drum, l., greening, g., mormon, j., henderson, i. and hughes, c. w. . animal-assisted therapy in psychiatric rehabilitation. anthrozoös ( ): – . doi: . / . national health and medical research council [nhmrc]. . nhmrc levels of evidence and grades for recommendations for developers of clinical practice guidelines. canberra: nhmrc. nimer, j. and lundahl, b. . animal-assisted therapy: a meta-analysis. anthrozoös ( ): – . doi: . / x . pedersen, i., martinsen, e. w., berget, b. and braastad, b. o. . farm animal-assisted intervention for people with clinical depression: a randomized controlled study. anthrozoös ( ): – . doi: . / x . maujean et al. a n th ro zo ö s az ( )-text_layout / / : am page rossetti, j. and king, c. . use of animal-assisted therapy with psychiatric patients: a literature review. journal of psychosocial nursing and mental health services ( ): – . doi: . / - - . smith-osborne, a. and selby, a. . implications of the literature on equine-assisted activities for use as a complementary intervention in social work practice with children and adolescents. child and adolescent social work journal ( ): – . doi: . /s - - - . souter, m. a. and miller, m. d. . do animal-assisted activities effectively treat depression? a meta-analysis. anthrozoös ( ): – . doi: . / x . trotter, k. s., chandler, c. k., goodwin-bond, d. and casey, j. . a comparative study of the efficacy of group equine-assisted counseling with at-risk children and adolescents. journal of creativity in mental health ( ): – . doi: . / . villalta-gil, v., roca, m., gonzalez, n., domenec, e., cuca, escanilla, a. et al. . dog-assisted therapy in the treatment of chronic schizophrenia inpatients. anthrozoös ( ): – . doi: . / x . wells, d. l. . the effects of animals on human health and well-being. journal of social issues ( ): – . doi: . /j. - . . .x. a systematic review of randomized controlled trials of animal-assisted therapy… a n th ro zo ö s az ( )-text_layout / / : am page antimicrobial agents and chemotherapy, feb. , p. – vol. , no. - / /$ . � doi: . /aac. . . – . copyright © , american society for microbiology. all rights reserved. extended-spectrum �-lactamases in escherichia coli isolated from dogs and cats in rome, italy, from to alessandra carattoli, sarah lovari, alessia franco, gessica cordaro, paola di matteo, and antonio battisti * istituto superiore di sanità and istituto zooprofilattico sperimentale delle regioni lazio e toscana, rome, italy received july /returned for modification september /accepted october we report expanded-spectrum cephalosporin resistance in escherichia coli from dogs and cats in rome, italy. three major �-lactamases (cmy- , shv- , and ctx-m- ) are reported for the first time in e. coli from sick and healthy dogs and cats. molecular characterization suggests the presence of several combinations of �-lactamase genes in e. coli from companion animals. escherichia coli is a common microorganism found in the intestinal flora of humans and animals, although pathogenic strains cause serious diseases, including urinary and wound infections and septicemia. while antimicrobial use in produc- tion animals has been shown to lead to the emergence of resistant bacteria throughout the food chain ( ), little is known about the development of resistance in companion animals ( ). the objective of this study was to assess the presence of ex- panded-spectrum cephalosporin resistance in e. coli recovered from dead, sick, and healthy dogs and cats living in kennels or with private owners. over a -year period ( to ), e. coli isolates obtained from specimens from dogs and cats submitted for routine diagnostic investigation were collected at the isti- tuto zooprofilattico sperimentale delle regioni lazio e to- scana, rome, italy. of a total canine isolates, were obtained from necropsies ( from gut contents and from infected organs), were from diagnostic samples, and were from fecal samples from healthy animals submitted for parasite screening. a total of e. coli isolates of feline origin were obtained, of which were from necropsy specimens ( from gut contents and from infected organs), while and isolates were from diagnostic samples and fecal samples from healthy animals, respectively. two-thirds ( %) of the dogs investigated were from private owners, and the rest were from five different municipal facilities for unclaimed stray or lost dogs and from authorized private animal shelters. the cats tested belonged mainly to private owners ( %) and colonies of abandoned cats ( %) that are cared for by volunteers. an additional e. coli isolate was obtained from the gut of a brown rat (rattus norvegicus) found dead in a kennel in which dogs had also been tested. all strains were screened by antimicrobial susceptibility test- ing performed by the agar diffusion method with different antimicrobial drugs. sensitivity testing for ampicillin, amikacin, amoxicillin-clavulanic acid, cefotaxime, cephazolin, chloram- phenicol, enrofloxacin, gentamicin, kanamycin, nalidixic acid, streptomycin, sulfonamides, tetracycline, and trimethoprim- sulfamethoxazole were interpreted in accordance with the rec- ommendations of the national committee for clinical labo- ratory standards (nccls) ( , ). for colistin, breakpoint diameters of mm for resistance and mm for sensitivity were used. twenty-one strains ( %) from healthy, dead, and diseased dogs and cats, and from the rat, showed resistance to cefo- taxime ( [ . %] of ) and/or cefoxitin ( [ . %] of ). twelve strains ( %) also showed resistance to �-lacta- mase inhibitors (amoxicillin-clavulanic acid), and all strains showed resistance to several different antimicrobials, includ- ing nalidixic acid ( . %), enrofloxacin ( . %), aminoglyco- sides (gentamicin [ . %], kanamycin [ . %], streptomycin [ . %], and amikacin [ . %]), trimethoprim-sulfamethox- azole ( . %), chloramphenicol ( . %), and tetracyclines ( . %). resistance to extended-spectrum cephalosporins was defined on the basis of conventional nccls breakpoints; thus, the number of expanded-spectrum �-lactamase producers might have been underestimated in this collection. the characteristics of the e. coli strains showing resis- tance to expanded-spectrum cephalosporins are shown in ta- ble . this wide spectrum of antimicrobial resistance, especially toward extended-spectrum cephalosporins, prompted further characterization of the isolates. to investigate the genetic re- lationship among the isolates, we analyzed the chromosomal patterns obtained by pulsed-field gel electrophoresis (pfge) after digestion with the xbai restriction enzyme. twelve dif- ferent pfge profiles were obtained (pfge patterns differing for more than three dna fragments were classified as different profiles and are designated a to n in table ), demonstrating that there was not a unique resistant e. coli clone spreading among the animals ( ). however, five strains, four of them isolated from dogs from the same kennel, show similar chro- mosomal patterns (pattern g in table ), differing by one or two bands, indicating the diffusion of this strain among animals living in kennel c. e. coli strains were analyzed by pcr for the presence of the blashv-, blatem-, blactx-m-, blaampc-type genes with previ- ously described primer pairs (blashv and blaampc gene prim- ers in reference , ctx-ma and ctx-mb primers in refer- * corresponding author. mailing address: istituto zooprofilattico sperimentale delle regioni lazio e toscana, via appia nuova , rome, italy. phone: . fax: . e-mail: abattisti@rm.izs.it. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a a c.a sm .o rg / d o w n lo a d e d fro m http://aac.asm.org/ ence , and blatem gene primers in reference ). the amplicons obtained for the blashv-, blactx-m-, and blaampc- type genes were sequenced, and a comparative analysis of the nucleotide sequences was performed with advanced blast search program . within the qblast system at the national center for biotechnology information website (www.ncbi.nlm .nih.gov/blast/). we found different combinations of �-lactamase genes in the e. coli strains in our collection (table ). sixteen isolates were positive by pcr, and confirmed by dna sequencing, for the blactx-m- gene. e. coli isolates with the blactx-m- gene also frequently possessed the tem �-lactamase. e. coli pro- ducing plasmid-mediated ctx-m �-lactamase have been re- ported in cattle from japan ( ), but to our knowledge, e. coli isolates carrying the blactx-m- gene have never been de- scribed from healthy or diseased companion animals. three epidemiologically and genetically unrelated strains (identification no. , , and ) were positive to a blacmy-like gene, and the dna sequence of the amplicons revealed the presence of the blacmy- gene ( ). two of the blacmy- -positive strains were isolated from dogs coming from different kennels (a and b): one was from infected organs of a necropsied animal, while the other was from the feces of a healthy animal. interestingly, the third blacmy- -positive iso- late, also showing the presence of the blactx-m- gene, was from the rat found dead in kennel b, showing a pfge profile different from that of the e. coli isolates from the dogs that were tested in the same facility, thus suggesting that diffusion of the blacmy- gene may have occurred in this kennel. this is the first evidence of community-acquired e. coli isolates car- rying genes encoding cmy- from pets, although blacmy- - positive e. coli strains were previously reported to be associ- ated with nosocomial infections in dogs ( ). a significant extended-spectrum �-lactamase was also found in animals coming from kennel c. in this case, e. coli strains showed only two pfge profiles (patterns g and h) and three of the strains isolated from necropsy specimens (identification no. b, c, and d), from gut contents and from diseased organs, were positive for the same blashv amplicon that, after sequencing, was identified as the blashv- gene ( ) (table ). a fourth isolate (identification no. ) from a private owner’s necropsied dog, was also positive for the blashv- gene (table ). the shv- �-lactamase has previ- ously been described in clinical e. coli isolates from humans, healthy production animals, and a dog with recurrent urinary tract infections ( , ). in our study, the isolation of shv- - positive e. coli strains from lesions of dead animals from the same municipal facility suggests a community-acquired infec- tion, probably favored by the high animal density in the kennel. however, it is of concern that the same blashv- gene was also table . characteristics of e. coli isolates recovered from sick and healthy dogs and cats in rome, italy from to isolate species sourcea origin resistance patternb pfge profilec blashv- blacmy- blactx-m- blatem d dog organs kennel a amp amc ctx fox kan sul sxt tet a � � � � dog feces kennel b amp amc chl ctx fox gen b � � � � dog organs kennel b amp amc chl ctx eno fox kan nal str sul sxt tet c � � � � dog organs kennel b amp amc chl ctx eno fox kan nal str sul sxt tet nd � � � � dog feces kennel b amp amc chl ctx eno fox gen kan nal str sul sxt tet d � � � � dog infection kennel b amp amc chl ctx fox gen kan nal spt str sul sxt tet e � � � � rat gut contents kennel b amp amc ctx fox gen str sul sxt tet f � � � � dog feces kennel b amp amc chl ctx eno fox nal sul sxt tet g � � � � b dog gut contents kennel c amp ctx eno gen kan nal str sul sxt tet g � � � � c dog organs kennel c amp ctx eno gen nal sul sxt tet g � � � � d dog organs kennel c amp ctx eno gen nal str sul sxt tet g � � � � dog gut contents kennel c amp chl ctx eno nal sul sxt tet g � � � � a dog gut contents kennel c amp chl ctx eno nal str sul sxt tet h � � � � e dog organs kennel c amp chl ctx eno nal str sul sxt tet h � � � � dog organs kennel d amp ctx str sul sxt tet i � � � � dog organs private owner amp chl ctx kan spt str sul sxt tet l � � � � dog feces private owner amp amc chl ctx eno fox kan nal sul sxt tet nd � � � � cat organs private owner amp amc chl ctx eno fox kan nal str sul sxt tet c � � � � dog organs private owner amp amc ctx eno fox nal str sul sxt tet m � � � � cat organs private owner amp ctx eno fox nal sul sxt tet m � � � � cat organs private owner amp amc chl eno fox kan nal spt str sul sxt tet n � � � � a gut contents and organs are from necropsy specimens. b amp, ampicillin; amc, amoxicillin-clavulanic acid; chl, chloramphenicol; ctx, cefotaxime; eno, enrofloxacin; fox, cefoxitin; gen, gentamicin; kan, kanamycin; nal, nalidixic acid; spt, spectinomycin; str, streptomycin; sxt, sulfometoxazole-trimethoprim; sul, sulfonamides; tet, tetracycline; c nd, not determined. pfge patterns differing for more than three dna fragments were classified as different profiles. d blatem genes were identified by pcr, although several amplicons were sequenced identifying blatem- a and blatem- b gene variants. notes antimicrob. agents chemother. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a a c.a sm .o rg / d o w n lo a d e d fro m http://aac.asm.org/ found in the dog of a private owner, indicating the possible future appearance of this resistance gene in other companion animals. in several strains, the observed phenotype of resistance to cefoxitin or amoxicillin-clavulanic acid cannot be completely explained by the identified �-lactamase genes, suggesting the presence of additional mechanisms of resistance in these strains, such as inhibitor-resistant blatem or blaoxa- genes or overproduction of non-inhibitor-resistant blatem tem-type enzymes that need further investigation. with respect to the possible origin of cmy- , shv- , and ctx-m in pets, italian companion animal practitioners admit to rather diffuse off-label use of expanded-spectrum cephalo- sporins registered for human use in pet therapy that began in the early s, even earlier than in farm animal practice, where their administration is still limited to selected cases, for obvious economic reasons. the results of this study are of public health concern because nonjudicious use or misuse of highly valuable antimicrobial drugs can result in selective pres- sure on bacterial populations of companion animals. this may lead to the spread of pathogens carrying resistance to newer antimicrobials by vertical and horizontal transmission of genes, with the subsequent risk of transfer to humans. in this respect, further population-based epidemiological surveys may provide valuable information about the diffusion of multiresistant e. coli in companion animals. we thank gabriele panfili for conducting necropsies and microbio- logical testing of animals included in this study. we thank carmela buccella, cinzia onorati, tamara cerci, andrea pietrella, patrizia palmieri, and luigi sorbara for technical assistance. the results presented in this paper were produced by activities also supported by research grants from the italian ministry of health (re- search projects lt rfs / and izslt / ). references . bauernfeind, a., i. stemplinger, r. jungwirth, and h. giamarellou. . characterization of the plasmidic �-lactamases cmy- , which is responsible for 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[online.] http://europa.eu.int/comm/food/fs/sc/ssc /out _en.pdf (last accessed april ). . hujer, a. m., m. g. p. page, m. s. helfand, b. yeiser, and r. a. bonomo. . development of a sensitive and specific enzyme-linked immunosorbent assay for detecting and quantifying cmy- and shv- �-lactamases. j. clin. microbiol. : – . . national committee for clinical laboratory standards. . performance standards for antimicrobial disk and dilution susceptibility tests for bacteria isolated from animals; approved standard—second edition. m a . na- tional committee for clinical laboratory standard, wayne, pa. . national committee for clinical laboratory standards. . performance standards for antimicrobial disk susceptibility test; approved standards— th edition. m -a /m -a and supplemental tables m -s . national com- mittee for clinical laboratory standard, wayne, pa. . normand, e. h., n. r. gibson, d. j. taylor, s. carmichael, and s. w. j. reid. . trends of antimicrobial resistance in bacterial isolates from a small animal referral hospital. vet. rec. : – . . sanchez, s., m. a. mccrackin stevenson, c. r. hudson, m. maier, t. buffington, q. dam, and j. j. maurer. . characterization of multidrug- resistant escherichia coli isolates associated with nosocomial infections in dogs. j. clin. microbiol. : – . . shiraki, y., n. shibata, y. doi, and y. arakawa. . escherichia coli producing ctx-m- �-lactamase in cattle, japan. emerg. infect. dis. : – . . tenover, f. c., r. d. arbeit, r. v. goering, p. a. mickelsen, b. e. murray, d. h. persing, and b. swaminathan. . interpreting chromosomal dna restriction patterns produced by pulsed-field gel electrophoresis: criteria for bacterial strain typing. j. clin. microbiol. : – . . teshager, t., l. domı́nguez, m. a. moreno, y. saénz, c. torres, and s. cardeñosa. . isolation of an shv- �-lactamase-producing escherichia coli strain from a dog with recurrent urinary tract infections. antimicrob. agents chemother. : – . vol. , notes o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a a c.a sm .o rg / d o w n lo a d e d fro m http://aac.asm.org/ rev col cienc pec ; : - leonardo.f.gómez.g ,.mv,.esp.clin;.camilo.g.atehortua.h ,.est.de.mv;.sonia.c.orozco.p *,.mv,.esp.clin . grupo.de.investigación.centauro,.escuela.de.medicina.veterinaria,.facultad.de.ciencias.agrarias,.universidad.de. antioquia ..aa. ,.medellín,.colombia . panimesp@agronica .udea .edu .co (recibido:. .septiembre,. ;.aceptado:. .agosto,. ) resumen la influencia positiva de las mascotas en la salud y bienestar de los seres humanos es bien reconocida y comprende los aspectos sicológico, fisiológico, terapéutico y sicosocial. la función como facilitadores en la terapia asistida motivacional y física de numerosas enfermedades, ha permitido que los efectos benéficos de la tenencia de animales sean empleados en el ámbito terapéutico. adicionalmente, la compañía de mascotas se ha reconocido como un factor protector contra enfermedades cardiovasculares y reductor del estrés de sus propietarios: son un soporte sicológico, reducen la sensación de soledad y permiten la interacción de sus propietarios con el medio social que los circunda. estas relaciones hombre-animal implican algunos riesgos zoonóticos que es necesario minimizar, en especial en personas inmunocomprometidas; es aquí donde el médico veterinario debe cumplir una importante función en la asesoría para la tenencia responsable de las mascotas. así mismo, es esencial que el propietario conozca cuales son las obligaciones legales de la tenencia de una mascota. palabras clave: animales, beneficios, relación afectiva, salud mental y física, zoonosis. summary the positive influence of mascots in human health and well-being has been widely recognized embracing psychological, physiological, therapeutic and psychosocial aspects. the role of facilitators in motivational and physical therapy of numerous diseases has permitted that the positive effects be used at a therapeutic level. additionally, animals have been recognized as a protective factor against cardiovascular diseases and to reduce stress. they have also been identified as psychological support, to diminish loneliness and as a social lubricant. however, this animal-man relationship implies some zoonotic risk, which is necessary to lessen, especially with immunecompromised persons. veterinarians must act as consultants for a responsible animal ownership. key words: animals, benefits, mental and physical health, relationship, zoonoses. la influencia de las mascotas en la vida humana¶ the influence of mascots in human lives ¶ para citar este artículo: la influencia de las mascotas en la vida humana. gómez-g lf, atehortúa-h cg, orozco-p sc. rev col cienc pec ; : - . *. autor. para. el. envío. de. la. correspondencia. y. la. solicitud. de. separatas:. escuela. de. medicina. veterinaria,. facultad. de. ciencias.agrarias,. universidad. de. antioquia ..aa. ,.medellín,.colombia ..e-mail:.panimesp@agronica .udea .edu .co rev col cienc pec ; : - introducción varios. factores. han. favorecido. el. incremento. del. número. de. animales. de. compañía. en. las. grandes. ciudades. colombianas,. como:. la. demanda. de. mascotas. para. llenar. espacios. afectivos. en. los. entornos. familiares,. el. aumento. en. la. capacidad. económica. de. las. clases. sociales,. permitiéndoles. asumir. gastos. anteriormente. no. contemplados. en. su. presupuesto,. y. el. fenómeno. de. desplazamiento. de. poblaciones. campesinas. desde. las. áreas. rurales,. trayendo. consigo. la. cultura. de. la. posesión. de. animales . tener. un. perro. para. el. cuidado. de. la. casa,. la. vigilancia. de. un. negocio,. o. como. compañía. para. un. niño. o. un. adulto,. se. ha. convertido. en. una. necesidad.para.muchos ..los.registros.del.ministerio. de. protección. social. del. año. . indican. que. en. colombia. hay. ’ . . perros. ( ) .. el. congreso. colombiano.a.través.de.la.ley. .reguló.la.tenencia. de. los. perros. en. las. zonas. urbanas. y. rurales,. con. el. fin de proteger la integridad de las personas, la salud pública. y. el. bienestar. del. propio. ejemplar. canino. ( ) .. en. el. país. cada. año. crece. no. sólo. la. población. humana,.sino.también.la.canina,.por.lo.que.el.censo. canino. y. felino. de. la. ciudad. de. bogotá. en. el. ,. reveló. que. hay. un. perro. por. cada. diez. personas. y. un. gato. por. cada. .. según. la. secretaría. distrital. de. salud. de. bogotá,. en. la. capital. hay. más. de. . mil.perros.y.un.total.de. . .gatos.que.sirven.de. mascotas.( ) . este. aumento. desmedido. de. mascotas. en. las. ciudades. empieza. a. plantear. problemas. de. cohabitación,. a. la. vez. que. requiere. de. la. revisión. de. las. interrelaciones. que. derivan. de. esta. situación,. sus. repercusiones. en. la. salud. pública. y. en. la. salud. individual,. para. así. establecer. medidas. necesarias. para. minimizar. los. factores. de. riesgo. de. zoonosis .. sin embargo, a pesar de las dificultades que pueda traer. estas. poblaciones. masivas. de. animales,. es. importante hacer una reflexión en torno al porque esta. relación. hombre-animal. es. tan. estrecha,. lo. que. ha. llevado. a. que. las. mascotas. tengan. una. gran. aceptación.en.la.vida.del.ser.humano ... en. muchos. países. como. suecia. ( ),. estados. unidos.( ,. ).y.australia.( ,. ,. ).se.reconocen. las. bondades. de. la. compañía. de. las. mascotas. y. su. importancia. en. la. vida. humana .. en. los. estados. unidos. este. reconocimiento. ha. generado. leyes. que permiten la residencia de un animal con fines terapéuticos. en. las. viviendas,. donde. no. permiten. la. permanencia. de. mascotas .. en. estos. casos. el. animal. no. es. considerado. como. mascota,. sino. como. parte. necesaria. de. un. tratamiento. o. como. apoyo. de. una. discapacidad,. tal. como. sería. una. silla. de. ruedas .. una. carta. de. recomendación. o. receta. médica. de. un. profesional idóneo (psicólogo, fisiatra o médico) es suficiente para tener el derecho a la tenencia de un animal.como.asistencia.terapéutica.( ) . el presente artículo pretende mostrar la influencia y. los. efectos. que. tiene. la. presencia. de. las. mascotas. en. la. vida. de. los. seres. humanos,. y. como. puede. ser. la.participación.del.médico.veterinario.en.la.relación. hombre-animal, para que esta sea más beneficiosa para. ambos .. así. mismo,. exponer. algunos. aspectos. legales.de.la.tenencia.de.un.perro . historia de las relaciones hombre-mascota la.relación.entre.los.humanos.y.los.gatos.a.través. de. la. historia. ha. sido. enigmática .. los. gatos. fueron. adorados. por. los. egipcios,. alcanzando. inclusive. condiciones. de. divinidad,. fueron. inmortalizados. en. el. arte,. la. música. y. la. literatura .. sin. embargo,. en. otras.culturas.esta.especie.ha.sido.ícono.de.maldad,. brujería,. y. relacionada. con. entidades. demoníacas .. ninguna. otra. especie. animal. ha. tenido. una. relación. tan. turbulenta. con. los. seres. humanos. como. el. gato .. hoy. en. día,. es. inmenso. el. apogeo. de. esta. especie. como. mascota,. debido. a. su. fácil. tenencia,. a. que. son. buenos. acompañantes,. hermosos,. con. grandes.personalidades,.interesantes.y.divertidos.de. observar ..el.censo.de. .de.la.población.felina.en. los.estados.unidos.fue.de.más.de. .millones,.este. auge. ha. generado. que. existan. médicos. veterinarios. exclusivamente. dedicados. a. la. práctica. clínica. de. esta. especie .. en. general,. los. propietarios. de. gatos. reportan. que. estos. le. proporcionan. amor. y. afecto. ilimitado,.lealtad.y.dedicación.incondicional;.que.se. sienten. reconfortados. con. su. presencia,. y. aseguran. que.el.hablar.y.jugar.con.ellos.les.permite.apaciguar. rev col cienc pec ; : - sentimientos.de.enfado.y.de.desazón ..estas.mascotas. llegan. inclusive. a. ser. considerados. por. sus. dueños. como.un.miembro.más.de.la.familia.( ) . el. lobo. es. el. antepasado. del. perro. doméstico,. evolucionando.a.éste.apenas.hace.unos. .mil.años. ( ) .. algunas. razas. de. perros. apenas. se. distinguen. del. lobo. a. simple. vista;. en. cuanto. al. carácter. y. comportamiento.social,.pocas.son.las.diferencias ..se. pueden.entender.muchos.comportamientos.perrunos. simplemente. pensando. cómo. interactúan. los. lobos. en. la. manada. ( ) .. todos. los. cánidos. viven. y. trabajan. en. sociedad .. al. separarlo. de. la. madre. y. hermanos. de. camada,. e. introducirlo. a. un. ambiente. diferente,. donde. sus. únicos. compañeros. van. a. ser. personas,.el.perro.traslada.su.comportamiento.social. a. su. nueva. “manada” .. esta. capacidad. de. adaptarse. fácilmente.a.convivir.con.las.personas.ha.permitido. la.domesticación.del.perro.( ) . a.través.de.la.historia.el.perro.ha.tenido.diversas. funciones:. cazador,. pastor,. guardián,. de. tracción,. fuente.de.calor,.camillero.en.las.guerras,.de.rescate,. en.el.espectáculo,.para.el.deporte.y.como.hoy.día.de. compañía .. en. la. antigua. europa. y. asia. occidental. fue.fundamental.como.auxiliar.de.cacería,.surgiendo. las. primeras. razas. según. el. animal. o. elemento. a. cazar:. razas. de. agua,. cobradores. o. retriever´s,. los. que. muestran. o. pointer’s,. ratoneros,. buscadores. de. trufas,.etc.( ) ... los. canes. también. han. estado. involucrados. en. actividades. violentas. como. la. del. toreo,. su. objetivo. era. excitar. el. toro,. generándose. una. serie. de. razas. de.apariencia.corpulenta,.gran.cabeza,.orejas.caídas. y. nariz. chata .. han. sido. combatientes. y. también. herramientas. estratégicas. en. guerras:. alejandro. magno. empleaba. dogos. del. tíbet. para. transportar. las.armas.de.los.soldados;.los.romanos.les.ataban.un. recipiente.de.bronce.con.fuego.para.que.provocaran. incendios. en. el. campo. enemigo .. hay. grabados. medievales. que. los. muestran. provistos. de. collares. con. puntas. de. hierro. y. enjaezados. con. corazas. con. cuchillas de acero destinados a lacerar el flanco de los caballos. la utilización del perro para este fin data.hasta.la.conquista.de.américa.del.sur.( ) . el. perro. ha. estado. presenta. en. la. mitología. de. diversas. culturas,. siendo. el. más. conocido. cerbero,. guardián de la entrada del infierno, cuya misión consistía.en.no.dejar.salir.a.nadie.de.allá ..los.perros. han.estado.presentes.en.la.religión.(logrando.rangos. de. dios:. anubis,. dios. egipcio. de. los. muertos),. la. pintura, la escultura, la literatura, la filatelia y hasta han.sido.acuñados.en.monedas.( ) . los. perros. en. egipto. eran. respetados. y. estaba. prohibido. matarlos,. condenándose. a. la. pena. de. muerte.por.este.delito.y.el.maltrato.animal.se.penaba. con. castigos. corporales .. . los. arqueólogos. han. encontrado perros momificados junto a la tumba de su amo, estos no eran sacrificados en el momento de su muerte, sino que eran momificados y depositados cerca.de.la.tumba.una.vez.que.dejaran.de.existir.por. muerte.natural;.se.les.lloraba.y.se.llevaba.luto.en.su. honor.( ) . los canes han sido compañeros fieles de reyes, emperadores,. de. la. aristocracia,. pero. también. de. personas. de. escasos. recursos. económicos,. no. siendo. esto. un. impedimento. para. la. entrega. de. su. amor y lealtad. afortunadamente para nuestro fiel compañero,. aquellos. tiempos. de. tanta. crudeza. han. quedado.atrás;.una.forma.de.compensar.y.enmendar. todas. las. desavenencias,. es. darle. el. cariño. y. trato. que.se.han.ganado.a.través.de.los.tiempos . efectos de las mascotas numerosos.son.los.estudios.que.han.demostrado. como las mascotas influyen de manera positiva en la.salud.y.en.el.bienestar.humanos.( ,. ,. ) ..las. investigaciones científicas han clasificado estos efectos en cuatro áreas específicas: terapéuticos, fisiológicos, sicológicos y sicosociales ( ). terapéutico los. animales. como. recurso. terapéutico. pueden. ser. incluidos. en. los. tratamientos. como. terapia. asistida. motivacional. o. como. terapia. física . la. primera. tiene. como. objetivo. introducir. a. un. animal. de. forma. permanente. o. con. una. regularidad. específica en el entorno de una persona, con el fin de. permitir. que. se. establezca. una. unión. afectiva.. ( ,. ) .. esta. metodología. ha. sido. utilizada. en. pacientes con síndrome de inmunodeficiencia adquirida. (sida),. enfermedad. de. alzheimer. y. rev col cienc pec ; : - diversos.trastornos.sicológicos.( );.se.ha.instaurado. en. hogares. para. la. tercera. edad. ( ,. ),. cárceles,. hospitales. ( ,. ). e. instituciones. siquiátricas. ( ) .. este. tipo. de. terapia. ha. potenciado. la. rehabilitación. de. pacientes. con. afecciones. cardíacas. ( ). y. ha. incrementado. el. porcentaje. de. supervivencia. de. la. enfermedad. coronaria. ( ,. ) .. recientemente,. hay. un. gran. interés. por. conocer. los. efectos. de. la. presencia. de. animales. cómo. parte. de. los. ambientes. laborales.( ) . pensando.en.las.personas.que.se.han.recuperado. y.en.las.que.aún.tienen.capacidad.de.vivir.de.forma. independiente,. algunas. instituciones. han. diseñado. programas. especiales .. uno. de. los. programas. es. la. asistencia. permanente. de. voluntarios,. para. que. cubran. las. necesidades. físicas. de. las. mascotas,. también. han. logrado. vincular. benefactores. para. que el factor económico no sea una dificultad. otra modalidad. de. programa. es. entregar. a. una. mascota. adulta. en. forma. de. “préstamo”. como. compañero. permanente. durante. el. tiempo. en. que. la. persona. sea. autónoma,. en. circunstancias. de. enfermedad. temporal.son.atendidos.por.voluntarios,.y.en.el.caso. de.incapacidad.permanente.o.muerte.estas.mascotas. son. situadas. en. otros. hogares .. una. organización. de. voluntarios. muy. reconocida. en. los. estados. unidos. es. “pets	 are	 a	 wonderful	 support”. (paws),. donde. prestan. asistencia. a. las. mascotas. de. personas. con. sida .. esta. organización. en. sus. . años. de. funcionamiento.tiene.aproximadamente. .clientes. y.colaboran.en.todos.los.menesteres.necesarios.para. que.los.dueños.puedan.continuar.con.sus.mascotas.a. pesar.del.avance.de.la.enfermedad.( ) . la. terapia. física. es. otra. forma. de. obtener. efectos. terapéuticos. a. través. de. los. animales,. la. forma. más. conocida. es. la. equinoterapia,. la. cual. inició. en. europa. hace. aproximadamente. . años. y. rápidamente. se. ha. ido. extendiendo. a. innumerables. países .. esta. terapia. se. ha. convertido. en. una. herramienta.para.incrementar.las.habilidades.físicas. basándose. en. el. movimiento. multidimensional. del. caballar ..permite.mejorar.la.función.motora,.el.tono. muscular,. la. postura,. el. equilibrio,. la. coordinación. y. la. ubicación. sensomotora .. ha. sido. utilizada. en. pacientes.con.síndrome.de.down,.parálisis.cerebral,. esclerosis.múltiple,.retraso.en.el.desarrollo.y.trauma. cerebral.( ) . el. movimiento. del. caballo. efectúa. en. el. jinete. un. estiramiento. pasivo. y. activo,. estimula. el. equilibrio. al. desplazar. rítmica. y. constantemente. el. centro. de. gravedad,. moviliza. la. pelvis,. médula. espinal. y. articulaciones. en. un. patrón. similar. del. caminar .. grupos. musculares. profundos. que. no. son. accesibles.en.una.terapia.convencional.son.estirados. y. fortalecidos. con. los. movimientos. del. caballo .. interactuar. con. un. caballo. provee. estimulación. visual,.táctil.y.olfatoria ..adicionalmente,.se.reportan. mejorías. en. el. habla,. las. funciones. cognitivas,. mayor. desarrollo. del. lenguaje. y. ayuda. a. desarrollar. paciencia,.responsabilidad.y.control.emocional.( ) . fisiológicos la. tenencia. de. mascotas. es. un. factor. protector. para. las. enfermedades. cardiovasculares,. pueden. modificar varios factores de riesgo: se disminuye la presión.arterial.( ,. ,. ),.se.reduce.la.frecuencia. cardíaca.( ),.la.ansiedad.y.el.estrés.por.soledad.( ,. ) y se liberan endorfinas al acariciar a las mascotas ( ) .. los. dueños. de. perros. tienen. una. mayor. actividad. física. en. comparación. con. aquellos. que. no. los. poseen,. y. como. consecuencia. los. primeros. tienen en general una mejor salud, reflejándose en un.menor.número.de.consultas.médicas.( ) . en. un. estudio. realizado. por. lynch. ( ). con. pacientes. cardiópatas. que. fueron. dados. de. alta. de. la. unidad. de. cuidados. intensivos,. se. determinó. que. el factor más influyente en la supervivencia y la recuperación. de. estos,. fue. la. severidad. del. daño. en. el. miocardio,. seguido. por. la. tenencia. de. mascotas .. la. mortalidad. en. el. primer. año. de. recuperación,. fue. cuatro. veces. mayor. en. pacientes. que. no. tenían. animales.( ) . en. australia,. la. obesidad. es. una. preocupación. de. la. salud. pública .. una. forma. de. promoción. del. ejercicio,. ha. sido. mediante. la. tenencia. de. un. perro .. en. este. país. se. ha. estimado. que. habría. un. ahorro. potencial.de. .millones.de.dólares.en.servicios.del. área. de. la. salud,. si. todos. los. propietarios. de. perros. caminaran. diariamente. durante. . minutos. con. su. mascota.( ) . recientemente,. se. han. realizado. estudios. para. determinar. si. la. tenencia. de. gatos. ( ,. ). y. de. perros ( ) puede influir sobre el desarrollo de rev col cienc pec ; : - enfermedades. alérgicas. como. el. asma. ( ,. ),. la. atopía. ( ). y. la. rinitis. alérgica. ( ) .. los. autores. meer. et	 al. ( ). y. hesselmar. et	 al. ( ). concluyeron. que.tener.un.perro.o.gato.como.mascota.durante.los. primeros. años. de. vida. es. un. factor. protector. contra. las. enfermedades. alérgicas. ya. mencionadas. ( ,. ) .. estos. autores. plantean. una. hipótesis. para. tales. resultados:. la. exposición. microbiana. a. temprana. edad. puede. proteger. contra. enfermedades. alérgicas. por. una. posible. variación. de. la. respuesta. inmune. de. linfocitos. hacia. el. tipo. no. alergénico .. una. exposición.a.temprana.edad.es.hasta.los. .años,.y.la. protección.adquirida.dura.a.través.de.toda.la.adultez,. independiente.de.la.presencia.de.un.perro.o.un.gato. en.esta.etapa.de.vida.( ) . sicológico el. vínculo. entre. las. personas. y. los. animales. ha. sido. sujeto. de. numerosos. estudios. en. los. cuales. se. han. evaluado. los. atributos. de. esta. relación. sobre. la. salud. mental. ( ,. ,. ) .. las. mascotas. ayudan. a. disminuir. las. alteraciones. psicológicas,. reducen. la. sensación. de. soledad. e. incrementan. el. sentimiento. de. intimidad,. conduciendo. a. la. búsqueda. de. la. conservación. de. la. vida. en. personas. enfermas. ( ,. ) .. en. estados. de. depresión,. estrés,. duelo. y. aislamiento. social,. las. mascotas. se. convierten. en. un. acompañamiento. incondicional,. aumentando. la. autoestima. y. el. sentido. de. responsabilidad,. que. necesariamente. genera. una. mejor. integración. con. la. sociedad. ( ,. ) .. las. mascotas. permiten. que. se. desarrolle.el.sentimiento.de.apego.en.los.niños.( ) .. en. un. estudio. realizado. por. wood. et	 al. ( ). los. autores.encontraron.que.los.dueños.de.mascotas.rara. vez. o. nunca. se. sentían. solos,. les. era. fácil. entablar. nuevas. amistades. y. tenían. un. mayor. número. de. personas. a. quien. recurrir. ante. una. eventualidad. o. crisis,. en. comparación. con. personas. sin. mascotas. ( ) . sicosocial es tanta la influencia que tienen las mascotas en. la. vida. comunitaria,. que. se. han. descrito. como. antídoto. para. el. anonimato. humano. en. los. sitios. públicos. de. la. actual. sociedad,. promoviendo. así. la. interacción.entre.personas.desconocidas ..un.estudio. realizado. por. wood. et	 al. ( ). demostró. que. los. propietarios.de.animales.tienen.una.mayor.facilidad. de. socialización,. de. establecer. el. vínculo. de. la. confianza en las relaciones interpersonales y de tener una. mayor. participación. en. eventos. comunitarios. y. apropiación. de. parques. y. otras. áreas. recreativas. con. su. mascota .. los. vecinos. frecuentemente. se. solicitan. favores. que. giran. entorno. a. la. mascota,. creándose un lazo de alta confianza, solidaridad y. gratitud. entre. ellos .. esto. hace. que. se. trascienda. más. allá. de. la. relación. propietarios-mascota .. el. sentido. de. la. reciprocidad. es. uno. de. los. pilares. fundamentales. de. una. comunidad. y. las. mascotas. son.un.catalizador.que.encaminan.a.los.propietarios. y.demás.integrantes.hacia.este.( ) . las	 mascotas	 y	 las	 personas	 inmunocompro- metidas las. mascotas. han. demostrado. tener. un. efecto. psicológico. y. emocional. importante. en. los. pacientes,. lo. que. ha. permitido. hacer. de. las. enfermedades. crónicas. algo. más. llevadero,. e. incluso,. se. pueden. convertir. en. facilitadores. de. la. recuperación. de. algunos. casos. ( ,. );. además,. brindan.un.aliciente.a.partir.del.afecto.incondicional. que. profesan,. convirtiéndose. en. sanadores. silenciosos .. esta. condición. plantea. un. reto. de. salud,. por. cuanto. está. claro. que. la. separación. del. paciente. inmunodeprimido. de. su. mascota. es. contraproducente. por. el. desequilibrio. emocional. al. que. se. expondría,. pero. también. es. claro. que. es. una. fuente. cercana. de. microorganismos. que,. para. las. condiciones. inmunológicas. del. paciente,. supone. un. riesgo. latente. que. pondrían. en. peligro. la. vida. del. mismo.( ,. ) . algunos. de. los. microorganismos. de. mayor. riesgo. para. un. paciente. inmunocomprometido. son:. salmonella	 spp,	 campylobacter	 spp,	 giardia	 spp,	 toxoplasma	 gondii,	 cryptosporidium	 spp,	 rhodococcus	 equi,	 bartonella	 spp,	 mycobacterium	 marinum,	leptospira	spp	y	bordella	bronchiseptica,	 siendo	 los. tres. primeros. los. más. comúnmente. trasmitidos	 ( ) .. si. bien. no. se. puede. garantizar. que. no se transfieran estos agentes desde las mascotas a sus. propietarios,. si. se. puede. minimizar. los. riesgos. de. contagio. siguiendo. unas. normas. básicas. de. convivencia. con. el. animal. y. de. manejo. del. mismo,. y.es.aquí.donde.el.médico.veterinario.toma.un.papel. preponderante. como. asesor. en. la. relación,. para. rev col cienc pec ; : - evitar.la.transmisión.de.enfermedades..zoonóticas,.y. como.vigía.de.la.salud.de.la.mascota.( ,. ) . un. programa. de. manejo. para. la. mascota. de. una. persona. inmunodeprimida,. es. similar. al. que. se. le. recomendaría. a. todos. los. propietarios,. la. diferencia. radica. en. que. . con. los. primeros. el. profesional. debe. asegurar. que. se. cumpla. a. cabalidad .. la. primera. medida.a.seguir,.por.parte.del.médico.veterinario,.es. darle.a.conocer.al.propietario.los.riesgos.que.acarrea. esta. convivencia,. brindando. información. precisa. sobre.las.enfermedades.que.pueden.ser.transmitidas. por. el. animal. y. las. estrategias. para. minimizar. las. posibilidades. de. contagio .. adicionalmente,. es. importante hacer un plan financiero para evaluar los. sobrecostos. que. un. programa. de. ésta. índole. conlleva .. el. médico. veterinario. debe. ser. cauteloso. en.su.orientación.al.propietario,.ya.que.al.alarmarlo. se. crearían. inseguridades. y. temores. que. podrían. deteriorar.su.relación.con.la.mascota.( ,. ) . es. primordial. vigilar. los. principales. medios. de. transmisión. de. microorganismos,. siendo. estos. los. utensilios. de. comida,. el. agua. de. consumo,. la. materia. fecal. y. la. saliva .. en. el. manejo. se. deben. incluir. aspectos. mínimos. como. la. alimentación. de. la. mascota. con. un. alimento. de. alta. calidad,. el. cual. haya. sido. sometido. a. procesos. de. pasteurización. o. cocción .. así. mismo,. el. agua. de. consumo. debe. ser. tratada. y. garantizada. como. potable .. se. debe. hacer. lavado. y. desinfección. constante. de. los. utensilios. donde. el. animal. se. alimenta,. además. de. los. lugares. de. descanso. habituales .. las. heces. deben. ser. recogidas.y.dispuestas.de.manera.tal.que.se.asegure. su.inocuidad ..todas.las.anteriores.medidas.deben.de. ser.realizadas.con.todas.las.mascotas,.independiente. del. estado. inmunológico. de. su. propietario,. pero. se. debe. de. cumplir. estrictamente. con. los. que. están. inmunocomprometidos.( ,. ) ... es. necesario. proponer. medidas. para. evitar. el. contacto. de. la. mascota. con. otros. animales. disminuyendo. de. esta. manera. la. posibilidad. de. que. contraiga. enfermedades. infectocontagiosas .. estas. medidas. se. deben. acompañar. de. un. plan.. sanitario. con. vacunaciones,. control. de. endo. y. ectoparásitos,. detartrajes,. chequeos. médicos. más. frecuentes. (cada. . a. . meses). con. la. realización. rutinaria. de. coprológicos,. hemogramas. y. pruebas. para.funcionamiento.hepático.y.renal.( ,. ) . personas	epilépticas	y	las	mascotas los beneficios de las mascotas en la vida del ser. humano. son. incontables,. pero. en. situaciones. médicas. especiales. del. propietario,. el. médico. veterinario. debe. tener. cautela. al. recomendar. su. tenencia:.se.debe.anteponer.la.salud.mental.y.física. del. animal. y. la. integridad. física. del. propietario .. cuando.la.condición.especial.es.la.epilepsia,.estaría. contraindicado.adquirir.un.perro.sin.que.este.tuviese. un entrenamiento específico para enfrentar las crisis. convulsivas .. un. perro. no. adiestrado. podría. reaccionar. de. manera. instintiva,. convirtiéndolo. en poco confiable y de alta peligrosidad para su propietario.( ) . los. mecanismos. de. supervivencia. de. un. perro. están. encaminadas. hacia. cuatro. formas. básicas:. la. huida,. donde. se. retira. o. huye. de. la. amenaza;. el. atacar,. donde. se. desarrolla. un. comportamiento. agresivo. hacia. la. fuente. agresora;. la. inmovilidad. tónica,. en. el. cual. el. perro. no. es. capaz. de. tener. una. reacción. de. tipo. motor. quedándose. inmóvil;. y. el. comportamiento pacífico, en el cual puede tornarse juguetón,.sumiso,.presentar.vocalización.o.gemidos,. o asumir un comportamiento conflictivo. debido a la neurofisiología del comportamiento del perro ante el. miedo. y. su. respuesta,. fácilmente. se. entrecruzan. las. conductas. de. huida,. ataque. y. de. inmovilidad,. las cuales se pueden intensificar y al mismo tiempo, alternarse. rápidamente. entre. ellas. en. situaciones. de. extremo. estrés. y. peligro .. cuando. se. generan. exposiciones. repetitivas. a. una. amenaza,. en. este. caso. la. epilepsia,. la. respuesta. cada. vez. se. puede. tornar.más.errática.y.desencadenar.en.consecuencias. lamentables.para.el.dueño.y.el.perro.( ) . numerosos.casos.se.han.documentado.en.donde,. durante. los. episodios. epilépticos,. los. perros. se. tornan. ansiosos,. temerosos,. inquietos,. vocalizan,. tratan. de. esconderse. y. exhibe. comportamiento. errático. y. agresivo .. estos. perros. han. llegado. a. ahorcarse. con. su. propia. traílla. tratando. de. huir. de. la. situación,. han. atacado. a. la. persona. convulsiva. causándole.extensas.heridas.en.cara.o.extremidades. y. han. agredido. a. personas. que. están. cerca. o.. aquellos.que.tratan.de.prestar.auxilio.( ) . a. perros. no. entrenados. para. el. fenómeno. de. la. epilepsia. se. les. ha. realizado. mediciones. de. rev col cienc pec ; : - corticosteroides. plasmáticos,. encontrando. niveles. elevados. asociados. con. manifestaciones. clínicas. de. inmunosupresión .. para. estos. animales. la. situación. expuesta. es. extremadamente. estresante,. genera. inestabilidad de su salud mental que se manifiesta en. el. comportamiento. ya. descrito;. muchos. de. estos. animales. han. tenido. que. ser. reubicados. en. otros. ambientes. familiares. ( ) .. según. strong. y. brown. ( ),. el. comportamiento. agresivo. es. el. más. frecuentemente. exhibido. por. los. perros. no. adiestrados .. esta. condición. genera. consecuencias. negativas,. tanto. para. la. mascota,. psíquicamente. perturbada. y. convertida. en. una. amenaza. latente,. como. para. los. agredidos. con. lesiones. físicas. de. consideración.( ) . por. el. contrario,. los. perros. entrenados. para. detectar los cambios fisiológicos previos a una convulsión,. permiten. a. las. personas. epilépticas. tener. una. vida. relativamente. independiente,. donde. al.ser.advertidos.de.un.próximo.episodio.epiléptico,. pueden. buscar. un. sitio. tranquilo. y. seguro. para. superar. la. crisis .. los. perros. pueden. detectar. una. crisis.de. .a. .minutos.previos.a.su.presentación,. lo.que.disminuye.el.estrés.a.la.persona.al.reducirse.la. impredecibilidad. de. cada. episodio. y. contribuyendo. con. esto. al. aumento. de. la. calidad. de. vida. de. estas. personas.( ) . los	animales	como	bioindicadores	o	centinelas la. presencia. de. contaminantes. en. el. aire. ( ,. ),. en. áreas. cerradas. ( ),. en. el. agua. y. en. alimentos. tiene. implicaciones. en. la. salud. de. la. población. humana. expuesta. ( ) .. cuando. la. contaminación. es. crónica y de muy bajos niveles se dificulta realizar estudios. epidemiológicos .. diferentes. especies. animales. (perros,. gatos,. aves,. caballos). han. servido. como. centinelas. o. indicadores. de. los. efectos. de. numerosos. agentes. ambientales. sobre. la. salud;. las. sustancias. más. investigadas. de. esta. manera. han. sido. los. insecticidas. y. el. asbesto. ( ),. la. exposición. al. plomo. de. la. pintura. ( ). y. la. contaminación. atmosférica. ( ) .. los. perros. responden. a. los. tóxicos. de. forma. análoga. al. humano,. teniendo. estos fisiológicamente un ciclo de vida más corto y. estando. libres. de. importantes. factores. de. riesgo. generados. por. el. estilo. de. vida. ( ,. ,. ) .. en. un. estudio determinaron que la distribución geográfica del. cáncer. de. vejiga. en. los. perros. era. similar. al. del. humano, lo que permitió identificar los factores cancerígenos.ambientales.( ) . debido. al. aumento. de. las. enfermedades. respiratorias. en. la. población. infantil. de. méxico,. se. evaluó. . el. efecto. de. la. contaminación. ambiental. en. las. ciudades. cuernavaca,. distrito. federal,. tlaxcala. y. tuxpan,. mediante. los. cambios. encontrados. en. pulmones. caninos .. en. las. ciudades. más. contaminadas. se. encontraron. cambios. histológicos. significativos en todo el aparato respiratorio tanto en. los. perros. jóvenes. como. en. los. viejos .. por. las. similitudes. en. la. anatomía,. tamaño,. respuesta. a. cambios. y. composición. celular. pulmonar. de. los. perros. con. los. humanos,. los. resultados.. permitirán. elaborar. inferencias. o. hipótesis. sobre. el. aumento. de. la. morbi-mortalidad. en. la. población. susceptible.( ) . los. perros. igualmente. son. susceptibles. a. un. amplio.rango.de.infecciones.humanas.emergentes.( ,. ,. ),. lo. que. ha. hecho. que. el. perro. sea. un. modelo. adecuado.para.estudios.epidemiológicos.de.diversas. enfermedades. humanas. ( ,. ,. ) .. los. perros. domésticos. de. los. países. subdesarrollados. como. África.y.asia,.han.probado.ser.muy.adecuados.como. centinelas,.ya.que.son.numerosos.(un.perro.por.cada. . a. . personas). y. porque. es. frecuente. que. tenga. acceso. a. la. calle. sin. restricción .. por. ser. carnívoros. y. carroñeros. están. expuestos. a. muchos. patógenos,. conllevando. a. altos. porcentajes. de. seroconversión .. mediante. campañas. de. vacunación. antirrábicas,. se. ha. recolectado. muestras. sanguíneas,. incrementado. la eficiencia en la detección de enfermedades que. tienen. una. baja. prevalencia. o. de. aquellas. que. requieren. de. este. animal. como. reservorio. y. determinar. la. exposición. potencial. que. tienen. las. personas.( ) . en. los. estados. unidos. ( ). y. en. holanda. ( ),. como. parte. de. la. vigilancia. epidemiológica. de. la. enfermedad. de. lyme. o. borreliosis. humana,. han. muestreado. a. perros. para. la. detección. de.. anticuerpos.y.así.poder.inferir.el.riesgo.de.infección. ( ,. ) .. aparte. de. caninos,. en. los. estados.. unidos. han. muestreado. a. gatos. para. la. detección.. del.virus.del.nilo.(west.nile.virus).( ) .. rev col cienc pec ; : - como. parte. de. la. vigilancia. epidemiológica. de. la influenza aviar en europa, butler ( ) realizó un muestreo. serológico. en. tailandia. de. la. población. de. gatos. y. perros. clínicamente. sanos,. encontrando. niveles. de. anticuerpos. en. ambas. especies. animales .. los. resultados. indicaron. que. estos. animales. han. estado. enfrentados. a. este. virus. anteriormente. ( ),. concluyendo.que.estas.especies.sirven.de.centinelas. para. el. monitoreo. de. esta. enfermedad. emergente.. ( ,. ) . mejoramiento	genético	de	las	mascotas los.avances.tecnológicos.de.la.era.actual.no.son. ajenos.al.mejoramiento.genético.de.las.mascotas;.la. secuencia.del.genoma.del.perro.ha.sido.desarrollada. por. el. instituto. whitehead,. conocimiento. que. permitiría. predecir. el. temperamento. como. adulto. y. algunas.enfermedades.congénitas.en.estos.animales.y. sería.una.herramienta.útil.para.criadores.y.entidades. que. ofrecen. servicios. con. perros .. los. desordenes. genéticos. predisponen. o. pueden. llegar. a. afectar. la. productividad,. el. costo. y. el. vínculo. de. afectividad. de los perros de servicio. esto se ejemplifica con enfermedades. como. cáncer,. cataratas,. enfermedad. retinal,.epilepsia,.dermatitis.alérgicas.y.cardiopatías,. las. que. se. presentan. en. edades. avanzadas,.. cuando. posiblemente. los. perros. ya. han. trasmitido. estos.defectos.a.su.descendencia.( ) .. es. importante. que. las. personas. discapacitadas. que. dependen. de. un. perro. para. su. independencia. y. movilidad,. conserven. la. unión. animal-persona. por. el. mayor. tiempo. posible .. con. el. mejoramiento. genético. se. podría. contribuir. a. prolongar. esta. relación .. adicionalmente,. con. la. secuencia. del. genoma. en. un. futuro. se. podría. determinar. cuáles. perros. pueden. desarrollar. mejor. los. sentidos. del. olfato,.audición.y.visión,.para.así,.poder.destinarlos. a un programa específico de entrenamiento desde temprana. edad,. sin. tener. que. pasar. por. etapas. de. selección. según. sus. destrezas,. lo. cual. conllevaría. a. un.ahorro.de.tiempo.y.de.recursos.( ) . aspectos	legales	de	la	tenencia	de	perros en. colombia. a. través. de. la. ley. . de. julio. . de. . se. regula. la. tenencia. de. perros. en. las. áreas. urbanas. y. rurales,. obligando. al. propietario. que. el. alojamiento,. aspecto. sanitario. e. higiénico,. alimentación. y. custodia. sean. adecuados .. determina. que.en.las.zonas.comunes.o.públicas,.los.ejemplares. deberán. estar. sujetos. por. medio. de. una. traílla,. y. provistos.de.bozal.si.son.de.las.razas.potencialmente. peligrosas. como. stafford. terrier,. bullmastiff,. doberman,. dogo. argentino,. dogo. de. burdeos,. fila. brasilero,. mastín. napolitano,. pitbull. terrier,. presa. canario,. rottweiler. y. tosa. japonés;. perros. que. hayan. tenido. episodios. de. agresión. a. personas. o. con.otros.perros,.o.perros.que.hayan.sido.adiestrado. para.el.ataque.y.la.defensa ..también.estipula.la.ley,. que.los.menores.de.edad.no.pueden.ser.propietarios. de.razas.potencialmente.peligrosas.( ) ..si.un.perro. ataca.a.otra.mascota,.su.propietario.estará.obligado.a. pagar.por.todos.los.daños.causados,.adicionalmente. podrá. ser. sancionado. por. la. autoridad. municipal. competente .. si. un. perro. es. reincidente,. la. autoridad. competente. podrá. proceder. al. decomiso. y sacrificio del animal. si un perro potencialmente peligroso ataca a una persona infligiéndole lesiones permanentes. de. cualquier. tipo,. las. autoridades. podrán decomisarlo y sacrificarlo ( ). la. ley. prohíbe. dejar. las. deposiciones. fecales. de. los. caninos. en. las. vías,. parques. o. lugares. públicos,. las. que. deberán. ser. recogidas. por. su. tenedor. y. disponer.de.estas.adecuadamente;.el.incumplimiento. de.la.norma.podrá.generarle.una.sanción.pecuniaria. o. de. trabajo. comunitario,. según. lo. disponga. la. autoridad.( ) . conclusiones el.médico.veterinario.es.el.profesional.llamado.a. participar.activamente.en.el.complejo.entramado.de. la. relación. que. se. teje. entre. propietario. y. mascota .. su. participación. debe. involucrar. los. aspectos. del. área. clínica. y. la. sanidad. animal,. la. nutrición. y. la. educación. a. propietarios. sobre. el. manejo. de. la. mascota .. la. tenencia. responsable. comprende. una. alimentación. adecuada,. vacunaciones. y. desparasitaciones. según. planes. de. manejo,. disponibilidad. de. tiempo. para. pasear. al. animal,. el. aseo. cotidiano. y. las. actividades. de. recreación. del. animal .. finalmente,. se. debe. resaltar. como. los. innumerables. aspectos. positivos. de. la. tenencia. de. una. mascota. sobrepasan. los. negativos,. como. serían. los. daños. que. ocasionan. a. los. enseres,. mordeduras.. y.el.tiempo.que.ellos.demandan . rev col cienc pec ; : - asimismo,. se. debe. orientar. a. los. futuros. propietarios. en. la. adquisición. de. mascotas,. analizando. múltiples. aspectos. para. garantizar. la. obtención. de. la. más. apropiada,. siendo. esta. una. relación. que. debe. perdurar. tanto. como. la. vida. misma. del. animal .. así. entonces,. el. médico. veterinario.deberá.asesorar.el.tipo.de.mascota.y.raza. apropiada.para.cada.familia.según.las.características. específicas de ésta: tipo de vivienda, número de integrantes,. edades,. estilo. de. vida,. capacidad. económica. para. suplir. las. necesidades. básicas.. de. la. mascota,. posibles. actividades. a. las. que. se. someterá. (vigilancia,. cría,. compañía. en. actividades. atléticas,.caza,.etc .) . el.médico.veterinario.tiene.un.gran.compromiso. social. al. ser. responsable. del. control. y. de. la. disminución. de. los. riesgos. para. la. salud. humana. de. las. zoonosis. provenientes. de. las. mascotas .. para. esto.es.necesario.estrechar.lazos.con.los.propietarios. para. que. se. pueda. tener. un. panorama. completo. del. ambiente. donde. se. desenvuelve. el. animal. y,. lograr. condiciones. de. sanidad. óptimas. en. los. espacio. de. convivencia.hombre-animal . existe. un. gran. campo. de. investigación. a. partir. del. mejoramiento. genético. de. los. animales. de. compañía,. se. podrían. crear. programas. de. selección. generando. descendencias. libres. de. enfermedades. congénitas .. así. mismo,. obtener. cachorros. con. un. comportamiento. determinado. para. programas. específicos de entrenamiento ( ). actualmente,. las. prioridades. de. salud. pública. en. los. países. desarrollados. es. el. control. de. la. inactividad. física,. la. obesidad. y. la. salud. mental. de. sus. pobladores,. y. es. allí. donde. las. mascotas. tienen. un. gran. potencial. como. sanadoras,. pues. su. presencia. llama. a. la. actividad. de. sus. propietarios,. brindándoles. además. equilibrio. emocional. gracias. al. afecto. incondicional. que. ellos. proporcionan .. sin. embargo, se ha identificado que estos mecanismos de. participación. de. las. mascotas. son. subutilizados. y cabe anotar que los beneficios que aportan son duraderos,. tanto. como. dura. la. vida. misma. del. animal.( ) . sólo. es. necesario. proporcionar. a. las. mascotas. afecto. y. cuidar. de. sus. necesidades. con. amor. para. obtener. a. cambio. momentos. memorables. llenos. de. risas. y. alegría .. no. deja. de. ser. sorprendente. como. estos.seres.pueden.ayudar.a.mantener.la.salud.tanto. física. como. psíquica,. por. lo. que. es. importante. agradecer.con.cada.acto.de.vida,.su.compañía . agradecimientos los. autores. quieren. agradecerle. a. kiwi,. Ñata,. milena. y. maga,. y. a. todos. nuestros. pacientes,. por. haber. logrado. que. nuestro. pensamiento. se. abriera. y. entendiéramos. las. bondades. que. ellos. nos. obsequian. a. cambio. de. una. caricia .. por. nuestra. formación. de. médicos. veterinarios. siempre. pensamos. en. cómo. mejoramos. sus. vidas. cuando. la. verdad.es.que.ellos.son.los.que.mejoran.las.nuestras . referencias .. angulo. fj,. glaser. ca,. juranek. dd,. lappin. mr,. regmery. rl .. caring. for. pets. of. immunocompromised. persons ..j.am.vet.med.assoc. ;. : - . .. Ávila. eg .. historia. de. la. evolución. y. domesticación. del. perro. 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[fecha. de. consulta:. . de. julio. de. ] url:. http://www .saludcapital .gov .co/secsalud/noticias/ mascotas .html .. strong. v,. brown. sw .. should. people. with. epilepsy. has. untrained.dogs.as.pets?.seizure. ;. : - . .. wong. sk,. feinstein. lh,. heidmann. p .. healthy. pets,. healthy.people ..j.am.vet.med.assoc. ;. : - . .. wood. l,. giles-corti. b,. bulsara. m .. the. pet. connection:. pets. as. a. conduit. for. social. capital .. soc. sci. med. ;. : - . .. zasloff.rl ..a.new.appreciation.for.feline.friends ..compend. contin.educ.pract.vet. ;. : - . silent supporters: understanding clients’ lived experiences of animal-assisted therapy in counselling by jessica owen b.a., the university of victoria, a thesis submitted in partial fulfillment of the requirements for the degree of master of arts in the faculty of graduate and postdoctoral studies (counselling psychology) the university of british columbia (vancouver) april © jessica owen, ii abstract the human-animal bond has long been a topic of interest for both researchers and clinicians. there are many studies that support the benefits of animals with regards to humans’ psychological and physical wellbeing, such as improved mental and physical health in pet owners and the use of animals in paramedical practices (e.g., rector, ; souter & miller). however, although therapists are engaging animals in their practice all over the world, there is no empirical research looking to understand clients’ experiences of animal-assisted therapy (aat) in a counselling setting. this was the purpose of the current study. an interpretive phenomenological research design was used. six adults who had previously been clients of an aat therapist were interviewed, and their time with an aat practitioner ranged from to months. the resulting transcriptions were analysed using langdridge’s ( ) four stages of thematic analysis. five unifying themes emerged across participant experiences, including: a comfortable environment, animal behaviour and characteristics, human-animal relationships, intrapersonal experience, and engagement in therapy. three of these five themes also included sub-themes. this study contributes to the current literature by exploring the previously unheard perspective of aat clients and inviting further discussion on how clients perceive and interpret this unique approach to counselling. future research regarding aat and counselling are also discussed, as well as implications for counselling practice. iii preface this thesis is an original work by the author, jess owen. all work – including recruitment, data collection, data analysis, and writing – has been completed by the author. this study was approved by the university of british columbia’s behavioural research ethics board, certificate number h - . iv table of contents abstract ............................................................................................................................. ii preface.............................................................................................................................. iii table of contents ............................................................................................................. iv acknowledgements .......................................................................................................... vi dedication ....................................................................................................................... vii chapter : introduction ..................................................................................................... statement of the problem ........................................................................................... definition of terms ................................................................................................... rationale .................................................................................................................... gap in the literature ........................................................................................... clients’ experiences of therapy ........................................................................ versatility of animal-assisted therapy ............................................................. purpose of the study and statement of research question ....................................... chapter : literature review ............................................................................................ human-animal bond ................................................................................................. current resources ............................................................................................. animal-assisted interventions ................................................................................ historical roots ................................................................................................ benefits of animal-assisted interventions ....................................................... animal-assisted therapy in counselling ................................................................ role of the therapy animal ............................................................................. existing techniques and intentions .................................................................. therapeutic touch ..................................................................................... accessing feelings .................................................................................... animal-assisted metaphors ...................................................................... therapeutic relationship ......................................................................................... impact of aat on therapeutic outcomes .............................................................. common therapeutic approaches and aat .......................................................... cognitive-behavioural therapy ....................................................................... person-centered therapy ................................................................................. gestalt therapy ................................................................................................. solution-focused therapy ................................................................................ ethical considerations ............................................................................................. treatment of therapy animals ......................................................................... safety of clients ............................................................................................... chapter : research methodology.................................................................................. research design ...................................................................................................... v participants ....................................................................................................... participant recruitment .................................................................................... data collection ................................................................................................. data management ............................................................................................. data analysis .................................................................................................... situating the researcher .......................................................................................... managing the researcher’s subjectivity .......................................................... criteria for trustworthiness ..................................................................................... ethical considerations ............................................................................................. chapter : results ........................................................................................................... theme : a comfortable environment ................................................................... theme : therapy animal characteristics and behaviour ...................................... feeling heard/understood ........................................................................ animal behaviours ................................................................................... theme : human-animal relationships ................................................................. therapist-animal relationship ................................................................. client-animal relationship ...................................................................... theme : intrapersonal experience ......................................................................... validation .................................................................................................. self-awareness ......................................................................................... clients’ shifting perceptions of therapist ................................................ decreased shame and self-consciousness ............................................... theme : engagement in therapy ........................................................................... chapter : discussion ..................................................................................................... summary of results ................................................................................................. contributions to the wider body of knowledge ..................................................... reduced anxiety, self-consciousness, fear of judgment ....................... more trusting of therapist ....................................................................... limitations and strengths ........................................................................................ suggestions for future research ............................................................................. implications for practice .......................................................................................... references ....................................................................................................................... appendices ...................................................................................................................... appendix a: chandler’s aat techniques............................................................. appendix b: chandler’s aat intentions ............................................................... appendix c: recruitment poster ............................................................................ appendix d: email to aat practitioners ............................................................... appendix e: screening questions .......................................................................... appendix f: interview protocol.............................................................................. appendix g: consent form .................................................................................... appendix h: demographic information form ....................................................... appendix i: list of resources for participants ....................................................... vi acknowledgments it is with heartfelt gratitude that i wish to thank the following people who have played an integral role in the development and completion of this thesis: to my supervisor, dr. marla buchanan, and my committee members, dr. marv westwood and dr. richard young: thank you for your support, encouragement, and belief in my abilities, which made this process not just possible, but enjoyable. to jane mauchan, who graciously acted as a peer reviewer of my findings, sparked insightful discussion, and shared her experiences of working with her dog. to my wonderful partner sara baynes: my official editor, cheerleader, and tea-maker! thank you for the countless hours you spent reading drafts, discussing ideas, offering your suggestions and insights, and most importantly, providing me with the confidence to keep going. to my parents, sisters, and friends: i want to express my sincere appreciation to all of you. your ongoing support, encouragement, and motivation throughout this process has meant the world to me. in particular, a heartfelt thanks to mum and dad, whose endless, tireless support helped me get to where i am today, and to mallory crew, a wonderful friend, motivator, and supporter! thank you for your patience with me throughout this entire process. finally, a sincere thank you goes out to all of the inspiring participants of this study, who offered not only their valuable time but also their willingness to share their stories, insights, and experiences. without you, this thesis would never have come to be. vii dedication this project is dedicated to all of the devoted therapy animals who go to work every day offering nothing short of pure love and affection, touching lives and making an immeasurable difference to the people they work with. chapter introduction "one of the most fundamental advantages of animal assisted therapy over other therapeutic modalities is that it provides the patient a much-needed opportunity to give affection as well as receive it. it is this reciprocity - rare among medical therapies - that makes aat a unique, and valuable route to healing." – dr. andrew weil statement of the problem for many years, the human-animal bond has been a topic of interest for both researchers and clinicians. for this reason, very successful programs incorporating animals have been implemented in various settings, including equine therapy for children with developmental disabilities (rector, ), rehabilitation programs with prison inmates (rector, ; souter & miller, ), animal therapy programs in which certified therapy pets are brought into hospitals to visit patients (delta society, ), and even reading and speech therapy programs for children using animals (altschiller, ; gammonley, howie, kirwin, zapf, & frye, ). it is widely accepted that the bond between humans and animals runs very deep, and has the potential to be a very influential relationship. there are many studies with findings that support the benefits of animals with regards to humans’ psychological health, such as decreasing anxiety and improving depressive symptoms (e.g., souter & miller, ). given this understanding of the fundamental bond between living beings, it is logical that health practitioners have begun to integrate animals into their practices. animal-assisted interventions (aai) include a variety of interventions ranging from reading assistance dogs, to equine-facilitated experiential programs, to the use of companion animals in therapy sessions. aais are being practiced internationally by counsellors, psychologists, physiotherapists, and other paramedical service providers (e.g. gammonley, howie, kirwin, zapf, & frye, ; rector, ). animal-assisted therapy (aat) makes up one branch of these interventions, and is a small but rapidly growing field. researchers and clinicians alike are beginning to realize the potential of having an animal in the therapy room. however, while the implementation of this unique approach is expanding, little is understood about the experience of being an aat client. due to this paucity of research, a universal method of using aat has not been developed, despite the growing number of professionals beginning to incorporate companion animals into their practice. there is a lack of research illuminating what specific aspects of aat are salient for clients. such a dearth of evidence in this area demonstrates a need for a better understanding of clients’ experiences; this study aims to fill this important gap, for reasons described in the following sections. research on aat has not prioritized the clients’ experiences, which can be achieved through the phenomenological methodology used by this research study. this method provides the opportunity to develop an increased awareness of common themes of the experience of aat. employing phenomenological methodology from the clients’ perspectives provides the unique, and otherwise unexplored, opportunity to gain valuable insight into the practice of aat to better inform its future use within the field of counselling. implicit in this research problem, however, is the assumption that the human-animal bond is of benefit to all people. while this is supported by significant research (e.g., allderidge, ), it is certainly not true for every individual, and this must be considered if attempting to gain a fuller understanding of animal-assisted therapy. definition of terms animal-assisted activities (aaa): these “are informal, do not have specific treatment goals, and are not modified to meet the individual needs of the client” (altschiller, , p. ). these can be delivered by anyone: volunteers, paraprofessionals, or community members, and include activities such as recreational pet visits in hospitals and nursing homes. however, aaas are not formally within the scope of this study due to the more clinical focus of this research and the fact that the study is positioned in the field of counselling psychology research. animal-assisted education (aae): this term refers to the use of animals in assisting humans in learning specific skills, such as reading assistance programs and social skills (altschiller, ). these activities are delivered by “educators, laymen and volunteers with general therapeutic, educational or recreational goals in mind. these may have a therapeutic effect on the participant, but should not be confused with therapy” (parish-plass, , p. ). animal-assisted interventions (aai): this refers to “any therapeutic intervention that intentionally includes or incorporates animals as part of the therapeutic process or milieu” (kruger, trachtenburg, & serpell, , p. ). this term is the broader umbrella term encompassing all animal-assisted activities, education, and therapies. animal-assisted therapy (aat): chandler ( ) describes aat in counselling as “the incorporation of pets as therapeutic agents into the counselling process” (p. ). this can be done in a variety of ways and by using a variety of techniques. animal-assisted therapy is appropriate for use within a number of settings, such as schools, hospitals, agencies, and private practice (chandler, ). this approach is delivered by trained professionals and is used to meet specific goals tailored to the client’s individual needs. this is the intervention of primary interest in this study. counselling: the canadian counselling and psychotherapy association ( ) provides a definition of counselling as follows: counselling is the skilled and principled use of relationship to facilitate self- knowledge, emotional acceptance and growth and the optimal development of personal resources. the overall aim of counsellors is to provide an opportunity for people to work towards living more satisfyingly and resourcefully. counselling relationships will vary according to need but may be concerned with developmental issues, addressing and resolving specific problems, making decisions, coping with crisis, developing personal insights and knowledge, working through feelings of inner conflict or improving relationships with others. human-animal bond (hab): the american association of human-animal bond veterinarians ( ) define this as: the mutually beneficial and dynamic relationship between people and other animals that is influenced by behaviors that are essential to the health and well-being of both. this includes, but is not limited to, emotional, psychological, and physical interactions of people, other animals, and the environment. rationale there are several important reasons this research is valuable for both healthcare consumers and providers, and as such contributes greatly to the field of counselling psychology. first, it contributes to general knowledge of aat, and second there is a significant lack of empirical literature examining this phenomenon from the clients’ perspectives. further, it helps inform the practice of those already using aat by providing a more comprehensive picture of how clients themselves are experiencing this intervention. gap in the literature. the accessible literature regarding aat is primarily from the perspective of therapists who already practice it, and consists largely of case studies and anecdotal reports of these therapists’ experiences. although these reports are very valuable and contribute significantly to our understanding of aat, there is little opportunity for clients’ voices to be heard. as a result, there is minimal empirical research looking to understand the clients’ perspectives in particular. scholars have theorized animals’ potential to repair attachment, ease therapeutic rapport and trust building, and contribute to a client’s sense of safety in the therapy room. given the particular importance of a strong therapeutic alliance and heightened feelings of safety and trust for most clients, their experiences of aat may be very unique. understanding these experiences may shed light on how to most effectively approach treatment for these clients using aat, and help develop a better understanding of the role of animals in clients’ progress, healing, or recovery. although aais are being used internationally to supplement various medical, psychological, and paramedical interventions, there is scant empirical research on the uses and effects of these interventions, and even less research of a qualitative nature. the current study may help practitioners better understand exactly how clients perceive aat and its impact on them, as well as how aat is experienced and interpreted by these clients. clients’ experiences of therapy. given that this research is qualitative in nature, it offers a unique examination of the application of aat from the clients’ perspectives. in contrast to the existing literature that focuses on aat, the phenomenological approach that is used here enabled participants to fully explore and explain their experiences of this phenomenon, and to describe the meaning of this experience for them. additionally, the study provides important contexts that could help researchers and clinicians alike better understand what aspects of aat stand out to clients as most salient, potentially informing future practice. exploration of these questions may open the door for future research and provide a context in which to generate more focused research questions. versatility of animal-assisted therapy. deepening our understanding of an intervention as unique and versatile as aat has the potential to diversify and perhaps enhance current, well- established therapies, particularly considering that aat can be incorporated into almost any therapeutic approach. the broad applicability of aat offers much opportunity for both clients and clinicians to benefit from this practice, and hearing from clients directly about their perceptions and experiences of aat may shed important light on how to go about this integration in the most meaningful way. incorporating animals into counselling is not a therapeutic approach in and of itself: this offers the opportunity for many clients in a variety of different types of therapy to experience, and potentially benefit from, aat. purpose of the study and statement of the research question the broad purpose of this study is to learn about individuals’ experiences of aat. more specifically, this research is focused on developing a better understanding of the meaning clients make from the experience of animal-assisted therapy. in exploring these issues empirically, this study garners a deeper understanding of how people experience and make meaning of aat, as well as provides insight into the potential impacts or effects of this approach, regardless of the valence of these effects. this research also highlights some important limitations with regards to aat, which may further benefit not only clients, but also clinicians who are already incorporating animals into their practice, as well as those considering doing so. in deepening our understanding of these issues we may be able to further develop therapeutic approaches tailored to specific client needs. while “gold standards” of treatment exist for most psychological disorders, the integration of aat into these already well-established practices has the potential to be of significant benefit. as noted, animal-assisted interventions (aais) are already being used internationally in a variety of fields, and have significant potential for helping clients both within the therapy office and at home. clinicians already practicing aat have documented benefits of this practice; for example, animals have been found to reduce the anxiety of the initial counselling sessions while contributing to the establishment of a safe, trusting environment (arkow, ; fine, ). through the use of aais, clients gain and practice skills they can apply to many areas of their lives. despite their widespread uses, aais have not been sufficiently studied, and as such this research contributes to filling an important gap in the existing knowledge of using animals in counselling practice. given the adaptable nature of aat, therapies using animals have the potential to be integrated into many different therapeutic approaches, both theoretically and practically. chandler ( ) has provided brief descriptions of integrating aat into a variety of therapeutic approaches, including person-centred, gestalt, psychoanalytic, solution-focused, and cognitive- behavioural, among others. thus, aat offers a versatile approach to a variety of concerns for both clients and counsellors, and has the potential to be of significant benefit for many clients with diverse backgrounds and experiences. the primary question this research addresses is: what is the meaning of the lived experience of clients who have engaged in animal-assisted therapy? the existing literature on aat, as well as clients’ experiences of traditional therapeutic practices inform this question. in exploring this question with participants, possible topics of discussion include: (a) what aspect of aat did clients find most significant and most meaningful?, (b) were there any limitations perceived by clients regarding the use of animals in the counselling process?, and (c) how did clients perceive their relationship with the therapy animal to influence their experience of therapy? the present study attempts to give voice to these clients and provide an opportunity for them to share their stories and subjective experiences of aat. understanding these issues has significant potential to contribute to and inform current aat interventions and practice. chapter literature review the human-animal bond humans and animals have had important relationships (one might even argue that we have depended on one another) since the beginning of human existence. farm animals, working animals, and companion animals of all species have been an important part of human society throughout history and remain so today. through these relationships it has become evident that humans and animals have a unique relationship, and this relationship has been termed the human-animal bond (hab). while much of the interest in this phenomenon has historically come from the perspective of professionals in the animal industry, such as veterinary and equestrian fields, contemporary interest stems primarily from healthcare professionals, including both physical and mental health fields. the past three decades have seen a significant increase in the amount of research interest into the influence that the hab has on human health and well being (hines, ). hines ( ) describes the hab from a historical perspective. included in this description is a quotation from dr. leo bustad—a founding member of a society dedicated to animal-assisted interventions (aai)—when, in a summary lecture delivered at an international symposium on human-pet relationships, he stated: “the wish to keep an animal usually arises from a general longing for a bond with nature… this bond is analogous with those human functions that go hand in hand with the emotions of love and friendship in the purest and noblest forms” (p. ). this natural longing that humans seem to possess drives many people to keep pets as companions and to solicit comfort from our non-human friends. the relationship between people and their pets is unique; there is a natural reciprocity of love, attention, and trust. further, pet ownership is associated with many physical and mental health benefits, including: lower rates of heart conditions, speedier recovery from acute illnesses, higher self-esteem, less social isolation and depression, reduced anxiety, increased independence, and less need for caregiver support (barker & dawson, ; chandler, ; walsh & mertin, ). these tangible benefits from regular interaction with animals offer a strong foundation for believing that incorporating animals into therapy has the potential to benefit many clients. current resources. in , the first organization dedicated to the hab was founded. the delta foundation (which became the delta society in , and more recently pet partners) remains devoted to the promotion and research of the hab. they developed a journal dedicated to research on human-animal relationships, originally called the journal of the delta society and now titled anthrozoos. this is an excellent resource for community members, clinicians, and researchers alike. currently they provide information about aai, training for volunteers, helpful definitions, and much more. the chimo animal-assisted therapy group, based out of edmonton, alberta, is a canadian organization that provides many of the same services (on a smaller scale) as pet partners. this national group is growing as more and more healthcare professionals are beginning to integrate animals into their work across canada. animal-assisted interventions animal-assisted interventions include three sub-groups: animal-assisted education (aae), animal-assisted activities (aaa), and animal-assisted therapy (aat; schlote, ). the first, aae, consists of instances where an animal is incorporated into learning, such as reading- assistance dogs (schlote, ). the second, aaa, is the group most people are familiar with, and consist of any activity a human does with an animal, including recreational (such as taking a dog for a walk) or when therapy animals visit patients in the hospital. both of these sub-groups emphasize the strength of the human-animal bond, and highlight the benefits that connecting with an animal can have. although aae and aaa have innumerable benefits and are both very important facets of healthy living for many people, the focus of this paper is on aat specifically. this means that the primary interest is in the use of animals in counselling therapy, as practiced by registered or certified counsellors and psychologists. long before therapists brought animals into their practice, however, there existed an extensive history of animals being integrated in a much broader context in the field of mental health. historical roots. the relationship between humans and animals dates as far back as human existence: animals have provided emotional, psychological, spiritual, and social benefits to humans for thousands of years (levinson, ; serpell, ). it is not until relatively recently, however, that individuals in the helping professions have been intentionally incorporating animals into their therapeutic counselling practice. historically, it was in the th century that documentation was first made describing how patients in british mental institutions–then known as “insane asylums” or “madhouses”–seemed to benefit from interacting with stray cats or wild rabbits on the institution grounds, and from these animals the patients appeared to get the affection and interaction they were deprived of and desperately sought (allderidge, ). at the end of the th century, attitudes towards patients in these institutions began to change, and treatment of these individuals improved, involving more compassion, understanding, better living conditions, and even providing some recreational activities (davison, neale, blankstein, & flett, ; schlote, ). one thing that evolved with this shift was the intentional use of nature–the outdoors, plants, gardens, birds, and a variety of wild animals, called “asylum farms”–in order to provide patients with comfort and interaction (allderidge, ). animals including dogs, cats, rabbits, ducks, and squirrels roamed free on the properties of these institutions, and were said to be significant contributors to patients’ improved mood (allderidge, ). in the late s, german hospitals began incorporating animals into treatment, including dogs, cats, horses, and birds (fine et al., ). finally, in , a canadian hospital—the brockville psychiatric hospital in brockville, ontario—brought this concept to north america when they followed suit and began operating a farm on their property and encouraging patients to interact with the animals. soon after, a hospital in washington, d.c. began involving dogs in the psychiatric treatment of their patients (allderidge, ). during world war ii, a military hospital in new york included wildlife and farm animals in rehabilitation programs, and shortly thereafter another new york institution opened, explicitly offering “pet therapy” to children and adolescents with academic, behavioural, and emotional challenges (ross et al., ). over time, the approach to psychiatric treatment shifted, and the incorporation of animals in treatment declined as the supportive asylums were replaced by psychiatric hospitals that based treatment on a strict medical model. as a result of this, the programs involving animals were not included in the wave of empirical research that soon followed (katcher & wilkins, ). it was not until the late s that the use of animals in psychiatric treatment was revisited (schlote, ). benefits of animal-assisted interventions. as noted, aais have been intentionally used for many years in a variety of fields. many reported benefits are supported by either research or anecdotal reports. when animals are involved in therapy, results are often accelerated, particularly with children (levinson, ; sockalingam, ). both behavioural and social improvements have been noted with the use of animals with children in a variety of capacities, including learning assistance, physiotherapy, and counselling (martin & farnum, ). in therapy, children become more playful, focused, and seem to be more aware of their environment when working with the therapist (martin & farnum, ). in cases where animals are involved in rehabilitating prison inmates, reports have indicated that notoriously violent people are able to demonstrate affection, care, and nurturing towards the animals they cared for (beck, ). in fact, benefits were even noticed among the staff of hospital programs that bring in therapy animals; the staff “become more optimistic and treat patients with more sensitivity” (sockalingam, , p. ). people with severe mental illness, such as schizophrenia and other psychotic disorders, are often considered a population that is difficult to treat. however, people with these disorders demonstrated significant improvement in a variety of areas of life with regular interactions with therapy animals, such as health and domestic activities, and exhibited higher motivation in therapy (kovacs, kis, rozsa, & rosza, ). finally, people with dementia show increases in social behaviours and a reduction in mood problems, aggressive behaviours, anxiety, and even specific phobias (kanamori et al., ; robb, ). animals can even assist with recovery from loss and bereavement, seeming to contribute to an accelerated process of acceptance of the loss (akiyama, holtzman, & britz ). furthur, reported psychological benefits include: improvements in aggression (kanamori et al., ), self-esteem and depression (francis, ; siegal, ), and stress and anxiety (barker & dawson, ; beck, ; davis, ; siegal, ). in general, owning a pet positively impacts a person’s overall sense of well-being and facilitates humour (mcmullough, ; rowan & beck, ). elderly people experience unique benefits as well, as animals reduce loneliness in elderly populations (goldmeier, ; mcmullough, ) and have positive effects on physical health and overall cardiovascular status, as discussed above (anderson ; friedman, katcher, lynch, & thomas, ). in fact, pet owners have fewer doctor visits compared to non-pet owners (headey, ), and pet ownership is predictive of lower incidences and levels of depression (bolin, ; francis, turner, & johnson, ; garrity, stallones, marx, & johnson, ; siegal, ). finally, evidence suggests that owning animals may benefit people with mood disorders who have also suffered trauma (sockalingam, ). these findings provide the foundation for moving forward with aat in counselling, and exploring its potential to yield significant benefits for a wide variety of client concerns and needs. animal-assisted therapy in counselling animal-assisted therapy as it exists today is primarily thanks to therapist and researcher dr. boris levinson, whose work beginning in the s brought to attention the value of using animals in therapeutic treatment. when a child client of his arrived early for an appointment and met his dog, levinson’s observations of the benefits of involving the animal sparked his interest in the idea of what he later termed “pet therapy,” and he began to explore this phenomenon. his specific focus was working with children with behavioural problems, and he noticed the accelerated development of therapeutic rapport when his dog “jingles” was involved (levinson, ). there are several benefits that levinson observed with children and his use of pet therapy, such as a decrease in children’s anxiety about participating in therapy, an improved therapeutic alliance, and a more explicit demonstration of how the child relates to the world than traditional play therapy provides (levinson, ). the provision of consistent and unconditional love and warmth by a pet in the therapy room communicates to clients their worth, and levinson ( ) argues that children in particular benefit from these effects. recently, researchers have argued that this may be especially true for clients struggling with attachment- related concerns. role of the therapy animal. as the most integral part of aat, the animal that is selected for therapeutic work must be behaviourally sound, calm, trustworthy, and have a naturally social personality in order to ensure that the pet does not become distressed by exposure to strangers (altschiller, ). these animals act as companions, facilitate social relationships and interactions, and, in some cases, as a substitute for – or transitional relationship to – close human interpersonal relationships (arnold, ; francis, ). reports note that therapy animals provide positive emotional support and contribute to a soothing environment; in fact, they even help therapists recognize and identify distress in their clients earlier than they might without the animal present (arnold, ; goldmeier, ). client-therapist communication and interaction is made smoother with the therapy animal present, and some therapists suggest that a client’s feelings of independence are increased or reinforced by the animal in therapy (corson & corson, ). dogs are the typical animal of choice in aat that occurs within a therapy office, because dogs are easily trained, emotionally intuitive, and naturally loving and social animals (altschiller, ; chandler, ). they bond quickly with humans as they easily demonstrate their affection for people, and reciprocate the care and attention paid to them. their behaviour is relatively easy for humans to read, and their provision of unconditional love, nurturing, and affection has been suggested to play a role in repairing healthy attachment styles (zilcha-mano, mikulincer, & shaver, ). existing techniques and intentions. chandler ( ) compiled a list of animal- assisted techniques and intentions of aat that are applicable to a number of different therapeutic approaches and methods. for a complete list of these techniques and intentions, please see appendices a and b, respectively. therapeutic touch. therapeutic touch is typically discouraged and considered unethical between a client and therapist, with the exception of certain gestures in certain circumstances (altschiller, ). an animal, however, can act as a surrogate and provide this therapeutic touch in a way that is comfortable for the client and ethical on behalf of the therapist. physical contact provides nurturance and caring, which can have significant benefits to a client. a therapy animal can be petted, hugged, and touched by a client when the need or longing for therapeutic touch comes up, and the animal, being a living being, can reciprocate the affection, thus reinforcing the benefits of the client seeking this comfort (chandler, ). accessing feelings. it is not uncommon for clients who come to counselling to encounter some difficulty accessing or truly experiencing their emotions. with a therapy animal, counsellors can employ both direct and subtle techniques in order to help the client do this, such as asking the client what the therapy animal might say about his or her emotions if the animal could talk (direct approach), or ask the client to focus on the animal and practice empathy by observing what the animal might be feeling, and then relating these feelings to him- or herself (subtle approach) (chandler, ). these techniques allow the client to access or describe emotions from a slightly more objective stance, which may be easier than expressing their feelings directly. animal-assisted metaphors. one technique identified by numerous aat practitioners is that of metaphors involving the therapy animal. this can be done for a variety of reasons, a few of which include emphasizing: (a) the value of communication and education, (b) the need for change, and (c) the importance of communication (chandler, ). metaphors and stories can help the client enhance insight and personal growth, and because the client perceives it as less threatening than presenting the idea about him- or herself directly, can “work like distraction methods getting around client defenses and resistance” (chandler, , p. ). chandler ( ) describes the use of metaphor as a “side-door technique” (p. ) in that although it draws focus away from the client and onto the therapy animal, the client understands the message through his or her own lens, perspective, and life experience. the use of metaphor employing the therapy animal has much potential for enhancing the therapeutic process. therapeutic relationship. almost every therapist and researcher who documents benefits of aat addresses the enhancement of the therapeutic relationship. chandler ( ) argues that “aat can be very useful in establishing a vital relationship link between the counselor and the client” (p. ), and that this is true regardless of the therapist’s theoretical stance. in enhancing trust and feelings of therapeutic safety, rapport between counsellor and client develops. children in particular experience fear and nervousness with beginning counselling, and the therapy animal can ease the child’s transition into the therapy process (levinson, ). levinson ( ) observed that a therapy animal allows the child client to become an active and willing member of the therapy process, thus accelerating the development of rapport. children with developmental disabilities demonstrated an increase in prosocial behaviours and were happier, more energetic, and more playful in the presence of an animal, again serving to ease the development of a strong therapeutic relationships (martin & farnum, ). many researchers agree that therapy animals serve an important function as transitional objects, whereby the client readily develops a primary bond with the animal, and this relationship then transitions over to humans—in the case of counselling, to the therapist (levinson, ; martin & farnum, ; parish-plass, ). further, the client witnesses the mutually respectful, nurturing relationship between the therapist and the therapy animal, and may notice that the therapist accepts the animal as it is, with both positive and negative characteristics. the client is then able to understand that he or she will likely receive the same level of acceptance and non-judgment from the therapist (parish-plass, ). seeing how the counsellor treats and interacts with the therapy animal may reduce a client’s initial feelings of anxiety, and help them perceive the therapy process as less threatening than they imagined (parish-plass, ). animals serve as “a catalyst for social interaction” (parish-plass, , p. ), facilitating communication and interaction. finally, the therapy animal may help the counsellor identify distress in their clients earlier than they might otherwise, which could enhance the trust the client has in the therapist’s ability, attentiveness, and level of care (sockalingam, ). impact of aat on therapeutic outcomes. outcomes of therapy are dependent on several factors of the process. meta-analytic studies have found that % of the outcome of traditional counselling is due to the client and factors outside of therapy; % is related to the relationship between therapist and client; % is attributed to the client’s hope and outcome expectations; and % is related to the actual techniques employed by the therapist (lambert & ogles, ). with the second-most significant factor being the therapeutic relationship, it is not unreasonable to speculate that aat offers a good chance of positive therapeutic outcomes. chandler ( ) suggests that given the important role of extratherapeutic factors, it may also be important to consider ways that an increase in client exposure to animals outside of therapy might benefit the client, as well. common therapeutic approaches and aat. therapists have successfully integrated therapy animals into the practice of many common, well-established therapeutic approaches. many believe that animals in therapy offer great opportunities as transitional beings—where traditional therapy might employ, for example, a stuffed toy or doll to act as a transitional being for a young client, in aat the animal itself fills this role, for clients of all ages (levinson, ; martin & farnum, ). animals “move and show intentional behavior. . . unlike stuffed toys who provide soft touch, animals are capable of giving active affection and seeking out the [client]. but most importantly they can never contradict the attributes projected onto them with words” (katcher, , p. ). in this way, the interaction between the client and therapy animal is a more genuine representation of interpersonal interaction than asking the client (a child, in the example above) to interact with a toy. in addition, engaging with a therapy animal is often perceived as less threatening and more inviting for a client than is engaging with another human, and therefore presents an important opportunity for clients to feel safe in the therapy room before the therapeutic rapport between client and therapist is solidified (chandler, ). chandler ( ) argues that therapy animals care only about people—the client in this case— based on the relationship to the client and the environment. this offers an opportunity for clients to interact with a being who not only has no knowledge of past struggles, traumas, or failures, but who also enters the relationship ready to provide unconditional love and acceptable in the here-and-now. this lends itself well to the development of a strong relationship between the client and therapy animal, and this relationship tends to develop faster than that between client and therapist (chandler, ). this “first step” in the development of safety and trust within the therapy room contributes to the overall enhancements the animal brings to the therapeutic process. the following sections offer a few examples of how aat can be applied to well- established, widely-practiced evidence-based modalities. cognitive-behavioural therapy. the role of therapy animals in cognitive-behavioural therapy (cbt) is quite specific. a client can be encouraged to use his or her relationship with the animal to practice social or functional skills; it can help clients more easily and/or accurately describe or express emotions and beliefs; and therapist feedback on the client-animal interaction is explicit and understandable for the client (altschiller, ; chandler, ). practicing positive behaviours with a dog, for example, may be much more interesting and engaging for a client than role-playing with the therapist or practicing on their own outside of therapy. goals of cbt, such as building a strong and trusting therapeutic relationship, expressing emotions, developing interpersonal skills, and improving self-confidence can all be met with the use of a therapy animal. finally, the interactions between the therapist and animal model positive social or functional behaviours, offering a more accessible example of healthy interpersonal encounters for the client to witness (chandler, ). person-centered therapy. many of the basic goals or techniques of person-centered therapy can be enhanced by incorporating an animal into the practice. the primary goal of this approach is to help clients move towards a more self-accepting stance (tudor & worral, ). this non-directive approach involves a therapist holding unconditional positive regard for the client, demonstrating congruence as they help the client develop greater insight while maintaining a safe, trusting environment. consistent with this approach are several opportunities for animal involvement, such as making observations about client-animal interactions, having reflective discussions with the client about these interactions and the client’s relationship with the animal, and of course, allowing the therapy animal to be present without offering any direct, specific action (chandler, ). gestalt therapy. gestalt counselling is an approach that recognizes that clients often come to counselling with a sense of feeling stuck that prevents them from moving forward or achieving life goals (perls, hefferline, & goddman, , as cited in chandler, ). the therapist’s role is to help the client “clear away all that may be distracting them from being fully present and aware in the here and now” (chandler, , p. ). suppressed or unaddressed emotions contribute to this sense of being stuck, and it is up to the therapist to help the client become more present in their lives, minds, and bodies. in this approach, therapy animals can provide assistance in a number of ways, including: (a) providing therapeutic touch that enables the client to become more aware of his or her bodily sensations and emotions, (b) helping both the client and therapist in identifying patterns in behaviour, thus enhancing insight, (c) providing an opportunity for the client to first share his or her story with the therapy animal (with the therapist merely observing), which many might perceive easier than speaking directly to the therapist; and (d) gestalt therapists may ask clients to create stories that involve the animal in order to gain further insight or clarity into intrapersonal struggles, conflicts, or beliefs (chandler, ). solution-focused therapy. from this perspective, clients are perceived as highly capable, and therapy tends to direct attention towards what is possible (macdonald, ). clients are encouraged to talk about possibilities and solutions as opposed to dwelling on the problems that need solving. macdonald ( ) expresses the belief that quality of trust in the relationship between therapist and client is essential for a positive therapeutic outcome, and a reliance on this trust is important in order for clients to continue with therapy as well as to complete any and all homework outside of therapy sessions. given this need for trust, aat techniques focused on enhancing the therapeutic relationship are important. a therapy animal in the room increases the feelings of safety and promotes a strong rapport (chandler, ). as with aforementioned approaches, the therapy animal offers an opportunity for clients to practice social and interpersonal skills in a more comfortable environment, and this in turn enhances self-confidence within the client. ethical considerations treatment of therapy animals. important and unique ethical issues must be considered when practicing aat. altschiller ( ) cites a sociologist who, in reference to aat, stated, “the prevalent perspective for aat/aaa research is ‘what can non-humans do for us?’ [and not] what such programs may do for, or to, the animals involved” (p. ). one of the most significant issues is how the therapy animal is treated, physically and emotionally, both within the therapy room and outside. animal well-being falls under two essential categories: physical health, and emotional and psychological well-being. although no formal code of ethics has been created regarding aat, altschiller ( ) sums up the five primary rights and freedoms these animals require, and are discussed below. the first three are physical rights, and include: (a) freedom from discomfort, (b) freedom from thirst, hunger, and malnutrition, and (c) freedom from pain, injury, and disease. physically, therapy animals, as with all pets, must have constant access to fresh water, be adequately nourished, have sufficient exercise, opportunity to be in the company of other animals of their kind, and given plenty of time to rest. preventative veterinary care and prompt treatment must be sought whenever the animal requires it to ensure health and comfort. finally, therapy animals must be treated humanely, free of neglect and abuse. the final two rights and freedoms refer to animals’ emotional needs, which are equally important. these rights include: (a) freedom from fear and stress, and (b) freedom to express themselves normally. animals, like humans, experience stress, over-stimulation, fear, anxiety, and a host of other emotions. it is vital that therapists protect their animal co-therapists from these uncomfortable and distressing experiences. it is recommended that the animals have regular breaks throughout the workday to ensure that they have adequate time to rest and prepare for the next client. it must also be explained to clients that occasionally the animal may need to take a break during a session, and that it must be allowed to do so. creating a “safe space” in the therapy office for the animal, such as a comfortable corner or crate, can ensure that the animal can retreat to this space and have a break at any time they need. this can also be an opportunity for the therapist to have a conversation with the client about the importance of self-care, and it models the therapist respecting the animal’s needs (altschiller, ; chandler, ). the training of the animal – typically a dog – must not involve coercive or fear-inducing techniques; rather, positive reinforcement models must be used to ensure that the animal feels respected and excited by the activities. avoiding negative training methods also builds the animal’s trust in humans, and reduces unpredictable behaviour. exposure to a variety of sounds, environments, scents, and situations is also important in order for the animal to be comfortable in all situations, and not startle easily. part of training also involves proper socialization of the animal – for example, dogs must be exposed to other dogs, with ongoing opportunities for socialization of this kind, as well as exposure to people. finally, the animal must be treated like a pet, that is, live in a comfortable, safe home environment. typically therapists who practice aat use their own pets as therapy animals, ensuring a strong bond and trust between therapist and animal, as well as the guarantee that the animal will have a permanent home upon its retirement from practice. safety of clients. whenever an animal is brought into the therapy room, the safety of the client must be a top priority. there are several facets of ensuring this: (a) proper certification of the animal, (b) knowledge of any animal-related allergies or anxieties the client has before the first session, and (c) the therapist’s knowledge of the therapy animal’s behaviour, patterns, personality, and emotional needs, including the ability to recognize when the animal becomes distressed in order to prevent reactive/fear-based behaviour. certifying an animal to be a therapy animal consists of comprehensive behavioural training and assessment (altschiller, ; chandler, ). it is crucial that the animal has no behavioural problems that have the potential to put a client at risk, and is able to handle unpredictable situations in a calm manner. animals must be trained with basic behavioural skills as well as any specific skills necessary for the therapy they will be engaged in. therapists involving these animals in therapy must be appropriately educated regarding the animal’s social and behavioural needs, and be able to identify signs of distress in the animal in order to ensure the best care possible for both the animal and the client. finally, clients must be made aware of the use of an animal in therapy prior to arriving at the therapy office in order to minimize the risk of negative physical or emotional consequences (e.g., allergies or phobias). chapter research methodology research design the methodological approach used for this study exploring clients’ experiences of animal-assisted therapy (aat) was qualitative in nature. this decision was made based on the belief that giving voice to people’s experiences and remaining open to hearing their stories, interpretations, and descriptions of these experiences would provide a deeper and richer understanding of the phenomenon of aat. further, engaging in conversation and following the participants’ lead provided a unique opportunity to ask questions and learn about aspects of their experience that may not be immediately evident to the researcher prior to engaging in this discourse. for these reasons, a phenomenological methodology was employed. rooted within the post-positivist framework, phenomenology is the study of human experience, focusing on those experiences as the topic of study – it is an exploration of how things are perceived (langdridge, ). phenomenological researchers recognize that their own theories, experiences, knowledge, and values influence what they observe. researchers within this framework understand knowledge to be derived from human interpretation, and that although a reality does exist, we can only know it through our own personal—and therefore biased—lens. the aim of phenomenological research is to “describe the meaning of the lived experiences for several individuals about a concept or phenomenon” (creswell, , p. ). for this particular study, the phenomenon of interest is aat. in conducting an in-depth interview with each participant i developed an understanding of the underlying meaning of the experience of aat and was able to identify common themes that emerged, unifying the participants’ experiences in some way. while there are several types of phenomenological methods, in order to complete this study in a way that fits with both my theoretical and philosophical views, an interpretive phenomenological methodology was used. the aim of this approach is to explore the meaning of an experience with participants who are able to offer a detailed description of it (moustakas, ). interpretive phenomenological methodology is considered “a guide to practice” rather than adherence to particular rules or steps. although interpretive phenomenology does not require complete bracketing of pre- existing assumptions and beliefs, researchers must do their best to be continuously reflexive and constantly aware of any preconceptions, assumptions, and beliefs that they hold about the phenomenon in order to minimize bias. i am not able to completely bracket my attitudes regarding aat, which are inherently biased given the nature of my beliefs and perceptions of the human-animal bond, and my experiences with animals in general. as such, in order to garner a comprehensive understanding of the experience, an awareness of this bias remained in the forefront of my mind throughout the data collection, management, and analysis processes. wertz ( ) nicely described how well phenomenology fits into the scientific world, arguing that these methods are “scientific by virtue of being methodical, systematic, critical, general, and potentially intersubjective” (p. ) and that they, along with all well-established and respected scientific methods, require critical thinking, decision-making, and creativity on the part of the researcher. these attributes make phenomenology a solid methodology that lends itself well to the social sciences, including counselling psychology. participants. the population of interest from which i drew my sample was people who have been clients engaged in aat in counselling. langdridge ( ) recommends participants as sufficient for an interpretive phenomenological design. several researchers caution that careful consideration with regards to sample size and saturation is necessary in order to prevent the volume of data becoming “counter-productive” (strauss & corbin, , p. ). thus, given this as well as the practical limitations to this project (e.g., time-limited; anticipated difficulty in finding participants), a sample of adult participants was reasonable. criteria for inclusion as a participant in this study was: a) years or older, b) proficient in the english language, c) having previously been a client of an aat practitioner, and d) be able to meet with the researcher for the interview either in victoria, b.c. or in the lower mainland, b.c.. participants were required to be adults in order to ensure their legal ability to consent, as well as to contain the sample to a population that is not typically experiencing the significant and unique developmental changes characteristic of adolescence (steinberg, ). adolescents may experience therapy in a very different way than adults, and considering both distinct age groups was beyond the scope of this study. proficiency in the english language was a requirement due to the in-depth narrative nature of the data collection process. the first six people to meet the above inclusion criteria were included in the study. of the six participants, five were between the ages of and , with the sixth participant age . five identified as female, and one identified as male. five participants were caucasian, and one identified as asian. all participants resided in vancouver, b.c. at the time of data collection. the time each spent in counselling with an aat practitioner ranged from to months. participant recruitment. purposive sampling (specifically criterion sampling) was used for participant recruitment. in the context of this framework, sampling is “a series of strategic choices about with whom, where, and how to do your research” (palys, p. ). the subcategory of criterion sampling is used when the researcher recruits participants who meet a specific criterion, which, in the case of this study, was having been a client of an aat counsellor. recruitment was done with the use of posters/flyers and online postings, and connecting with an aat practitioner. there are several therapists in the lower mainland and victoria who explicitly advertise their practice of aat. one of these therapists was willing to post a recruitment poster, visible for clients who are terminating counselling. although it would be unethical for the therapist to actively ask participants to volunteer for this study, having information about the research in her office waiting room allowed people to learn about the study and to decide if it is something they would be interested in participating in. please see appendices c and d for copies of the proposed recruitment flyer and email, respectively. another means of recruitment was posting flyers in animal-orientated spaces and businesses, such as veterinary clinics, pet stores, animal shelters, and dog parks. however, pet owners are typically the primary patrons of these locations, and although owning a pet is certainly not an exclusion criterion for this study, many clients of aat are not pet owners themselves. in order to attempt to reach clients who are not pet owners and do not frequent the above locations, recruitment materials were also made available in community settings (e.g., coffee shops and grocery store bulletin boards) as well as in healthcare settings, such as counselling agencies, medical clinics, hospitals, and public health offices. one final recruitment method used was social media and online sources, such as facebook and craigslist. these websites are means of reaching many people in a very straightforward and accessible manner, and as such provide important opportunities for reaching potential participants who might otherwise not encounter information about the study. data collection. when potential participants first inquired about volunteering for the study, an initial screening interview was set up and completed by telephone (please see appendix e for the screening questions). at this stage, the researcher described the research process and what the person could expect should they decide to participate. it was also during this conversation that the researcher ensured that all inclusion criteria were met, as well as collected information about the feasibility of the potential participant meeting with the researcher for the interview. at the end of the conversation, if all criteria were met, the researcher invited the person to participate, and if he or she agreed, then the interview was scheduled. participants were asked to engage in a semi-structured, in-depth interview, during which they were asked to describe their experiences of aat, what drew them to seek counselling from a therapist using aat, and any meaning they make of this experience. the interviewer used the interview protocol (appendix f), but most importantly followed the lead of the participant, asking probing/clarifying questions when applicable. at the beginning of the interviews the researcher carried out a comprehensive process of informed consent (appendix g) and reviewed the research process with each participant. once this was completed and the participant had a chance to ask any questions, he or she was asked to complete a demographics information form (appendix h). once this was completed, the digital audio recording device was turned on and the interview began. it was very important to build rapport and create a safe environment in which participants could discuss their personal experiences. prompting questions were asked, with probing or clarifying questions to help get a deeper, more meaningful understanding of the participants’ stories. as the interviews progressed, opportunities were provided for the participants to go deeper into his or her narrative. these interviews were audio recorded for later transcription. following data collection, participants were again contacted by email with a summary of the findings, and they were invited to review the findings and to provide feedback on whether the findings were an accurate reflection of their experiences. these member checks are described in more detail in the later criteria for trustworthiness section. data management. all participant information and collected data was kept confidential by storing it in a secure location. when the first interview was scheduled following the screening, the participant was matched with a code number in order to ensure that his or her name and other identifying information was not on any of the data. all written documents— including informed consent forms, participant demographic information, and the list of participant names matched with their code number—were kept in a locked filing cabinet, along with a usb flash drive containing the audio recordings of the interviews. written transcriptions and digital copies of the interviews were kept in a password-encrypted file on the researcher’s password-protected computer. data analysis. thematic analysis was used for analyzing the qualitative interview data. within the interpretive phenomenology framework, data analysis is considered less prescriptive, and instead is “guided more by the relationship between the researcher and the text” (langdridge, , p. ). using the four-stage model proposed by langdridge ( ), transcriptions were read and re-read several times in the process of identifying and linking emerging themes. after this process, unifying themes were identified and explored. the four stages proposed by langdridge are described below. stage one requires the researcher to read the transcript multiple times while making notes about the meaning of certain parts of the interview. these notes can consist of “summaries, associations or interpretations” (langdridge, , p. ). the goal in this stage of analysis is to describe the text relatively explicitly, as opposed to making comments that are highly interpretive. this process can be completed numerous times in order to ensure that the researcher has identified the meaning in the transcript as accurately as possible. langdridge ( ) recommends making these notes in the left-hand margin of the transcript. in the second stage of thematic analysis, themes that begin to emerge are documented in the right-hand margin of the written transcript. these comments move deeper into the meanings behind the notes made in stage one, and tend to “[reflect] a broader level of meaning in a particular section of text” (langdridge, , ). often these notes are of a more theoretically-oriented nature and begin to give thematic shape to the participant’s story. in stage three of this process, the analyst begins to identify actual themes, and documents these separately, maintaining the chronological order in which they arose in the interview. it is at this point that the researcher looks for common themes and linkages between themes. broader, more general themes as well as subthemes emerged at this point in the analysis. constant referencing of the transcription is crucial in order to ensure that the researcher is doing this in as accurate and meaningful a way as possible. in the final stage of analysis, a table of themes is developed, representing the unifying themes in a comprehensive way. it is at this stage that themes are given labels and carefully connected to the transcript – this is done by including direct quotations from the interviews. in this way, client voices are honoured in their true form and serve as a consistent foundation on which to reflect as analysis progresses. it is also at this point that any themes that no longer contribute to the analysis may be reconsidered or discarded. the analyst will complete all four stages for each participant separately, generating a compilation of all themes from each case. once this has been done for all transcriptions, a comprehensive list of themes and subthemes generated from all cases were generated. langdridge ( ) cautions, however, that “the process is cyclical and iterative, continually returning to the data to check meaning and confirm interpretations” (p. ). thematic analysis requires constant review of previous work to ensure that themes are identified as accurately as possible. it is also throughout this process of analysis that the researcher must be particularly aware of any personal biases and beliefs that may be impacting the interpretation of the data. situating the researcher given the nature of interpretive phenomenology, it is crucial to make explicit my own biases, attitudes, and beliefs as i discuss this research. as an avid animal lover engaged with rescue organizations as well as having worked for over years as a veterinary assistant, i have witnessed and experienced first-hand the positive and healing effects of animals. i therefore have a strong belief in the power of the hab and the immense potential of aat in counselling. i have seen the joy on children’s faces when they encounter a dog or cat; the unimaginable grief families experience when they lose a pet; and have borne witness to countless stories of the hope, laughter, and healing. my own personal experiences with animals and pets have been incredibly powerful and positive, further solidifying the belief i hold that animals benefit humans, when in reality this may certainly not be true for everyone. with these experiences so engrained in me, it was essential that i manage this subjectivity appropriately throughout the data collection and analysis processes. managing the researcher’s subjectivity. qualitative research, particularly interpretive phenomenology, is inherently subjective, and it is the researcher’s responsibility to ensure that personal assumptions, beliefs, and biases have a minimal effect on the research findings. it is important to note that the philosophy of phenomenology recognizes that every human being is living within a context, and as such it is impossible to approach research with a purely objective stance. however, it is essential that researchers do their best to prevent personal biases that may influence the interpretations of the data. while the researcher/analyst does play an important role in the co-construction of meaning, a constant awareness of his or her own biases is essential (langdridge, ). in remaining self-reflexive, seeking objective guidance and peer debriefing whenever possible, and conducting member checks to ensure comprehensive representation of participant experiences, i remained as objective and open-minded as possible in my approach to this research. criteria for trustworthiness guba and lincoln ( ) describe four pillars of trustworthiness for qualitative research: credibility, dependability, transferability, and confirmability. credibility indicates the believability of the interpretations from the perspective of participants and readers (bryman, teevan, & bell, ). in an effort to uphold this criteria, proper research procedures were followed and confirmation was sought from participants at several stages. throughout the interviews, the research summarized and checked in with participants to verify a clear understanding, and following the interviews, member checks were completed (described further below). further, all interviews were audio-taped and transcribed verbatim in order to remain true to the stories of each participant. finally, only one research conducted all interviews and analyses, maintaining consistency throughout the study. member checks are an important aspect of this method of qualitative research (bryman, teevan, & bell, ; creswell, ). in order to honour the participants’ voices and to ensure an accurate representation of their experiences, each participant was sent a copy of the transcription of their interview for review, and given the opportunity to add or clarify anything, or to remove anything they did not want included. no participants made any changes to their interview texts and agreed that they were an accurate depiction of their experiences. following analyses, participants were then sent a summary of the findings. they were asked to think about: (a) whether the themes resonated for them and their experience, (b) whether the list of themes was comprehensive, and (c) if they believe the findings had pragmatic value. a total of of the participants responded, and all of them endorsed the findings as reflective of their experience and two expressed a hope that more counsellors use aat in future. no participant offered any additional information to be included in analysis. dependability involves drawing a clear link between the data and the results. in order to honour this criterion, direct quotations are used throughout the description of the results, and a detailed description of the analyses and related procedures is included. finally, a peer expert review was conducted, as the last step in the data analysis process. to complete the peer expert examination, a certified counsellor who is currently practicing aat was asked to review the research findings and list of themes that were generated from the data. this impartial professional was asked: (a) does this list of themes resonate with your experience as a practitioner of aat?, (b) is the list comprehensive?, and (c) are these findings useful to you as a practitioner of aat? this process contributes to reflexive, honest analysis on the part of the researcher. the professional who completed this peer expert examination also endorsed the list of themes, stating the usefulness of these findings in both contributing to general knowledge of aat as well as helping her to reflect on her own practice using a therapy animal. in conducting a peer expert examination, a third party reviewed the data and the findings and agreed that the themes that were found by the researcher were grounded in the original data. transferability is, as it sounds, a description of how well a study’s findings can be transferred to other settings, groups, or situations (bryman, teevan, & bell, ; graneheim & lundman, ). however, given the personal nature of qualitative research, and that each individual’s experience is within a specific context, it is the reader who must decide whether the results of this study are transferable to other situations. in order to facilitate transferability as best as possible, findings here are described as thoroughly as possible, and the research procedures are conveyed as clearly as possible. finally, the fourth criterion for trustworthiness is confirmability (bryman, teevan, & bell, ). this essential piece refers to ensuring that the researcher has remained reflexive and self-aware throughout the research process and that the findings can be traced back to the raw data. i continually checked in with myself prior to and immediately following each interview in order to consider my own pre-existing biases and doing my best to bracket these in order to be fully present and open to each participants’ story. additionally, throughout data analyses i consistently returned to the transcripts to ensure that i was staying true to the voices of the participants and my interpretations of the data were indeed as accurate a representation of their experiences as possible. conducting the member checks and peer expert review further assisted in this as it helped maintain transparency throughout the study. ethical considerations in order to ensure that this study was conducted in the most ethical manner possible, several steps were taken to address key ethical issues common in counselling research, including: (a) informed consent, (b) participants’ right to withdraw at any point, (c) issues around privacy and confidentiality, (d) study rigour, and (e) provision of community resources to all participants should they feel the need to seek support following their participation. in addition, before commencing any of the recruitment or data collection steps described above, this study was approved by the behavioural research ethics board (breb), ensuring that it met all standards and requirements of safe, ethical research in the field of social sciences. as noted, prior to beginning the interview with each participant, the researcher explained the research process in order to ensure that the participant fully understood the nature of the study and what he or she could expect throughout the process. in addition, detailed informed consent forms were reviewed with and signed by each participant before turning on the audio recording device and commencing any data collection. this consent included an emphasis on the participant’s right to refuse to answer any question they are not comfortable addressing, as well as the right to withdraw from the study completely at any time, for any reason, and without consequence. steps were taken to protect participants’ privacy by conducting the interviews in a private, quiet location, where the conversation could not be overheard. to ensure confidentiality, the steps described in the data management section (above) were taken. it was communicated to participants that they need only discuss what they were comfortable talking about. further, a list of community resources was provided to all participants at each interview in order to ensure that, should they have felt the need to seek support following the interview, they had options to do so (appendix i). chapter results in response to the research question: what is the meaning of the lived experience of clients who have engaged in animal-assisted therapy?, five core themes of meaning-making for the participants were identified: (a) a comfortable environment, (b) therapy animal characteristics and behaviour, (c) human-animal relationships, (d) intrapersonal experiences, and (e) engagement in therapy. themes , , and all have sub-themes. each theme represents an important and unique aspect of the participants’ experiences of aat. theme : a comfortable environment the environment where the counselling takes place is often a client’s first indication of how they are going to feel in the counselling process, and may also be indicative of their overall experience with that particular therapist. the first session with a new counsellor can bring up anxieties and fears of all kinds, and feeling comfortable in the environment may be an important factor in the development of a positive, effective therapeutic relationship. during my interviews, participants routinely expressed an enhanced feeling of comfort and safety in a counselling session with a therapy animal present, and these feelings allowed them to open up, share more, feel increased trust in the therapy process, and in some cases even prolong the period in which they received counselling. several participants discussed their discomfort at the idea of sharing personal experiences and emotions with a stranger, a fear of being judged by the counsellor, or a general feeling of heightened anxiety with the idea of a one-on-one counselling session. with the therapy animal present, these participants found themselves able to relax, and described feeling almost immediately more comfortable with the entire process. some described it as “a less clinical environment” (participant a), while others explained that “it created a more trusting environment” (participant b) and that they “trusted [the counsellor] more because she had a pet” (participant c). having the counsellor bring a therapy animal into the therapy room helped ease the client’s anxiety and thus created a more comfortable counselling environment, but it also allowed the clients to perceive the counsellor as more relatable and, as participant b put it, “more human.” perceiving the counsellor in a less clinical fashion– that is, seeing them as a pet owner/animal person – enabled the participants to feel less intimidated by the counsellor and therapy process, and to see the therapist as “more of an equal” (participant c). this more informal perception of the counsellor set a tone for the session and for the newly-developing therapeutic relationship, providing an immediate foundation on which trust could develop. one participant articulated it well when she said, “it was a casual, comfortable setting around an animal that was secure and happy” (participant d). this quote indicates the importance of feeling safe around the therapy animal as well as describes the more casual, less formal environment that the presence of the animal offered. in addition to increased participant comfort and ease, the presence of a therapy animal helped establish an environment that allowed the client to feel more in control of his or her thoughts and emotions. participant e explained that having the dog there “calmed things, and it just sort of slowed everything down,” allowing her to “collect [her] thoughts... be more rational.” she further went on to express that the presence of the dog “helped open [her] up... made [her] more calm and more open to responding” than if the dog had not been there and it had been a traditional one-on-one interaction with a counselor. several participants articulated that having the therapy animal present to pet or interact with served as a coping tool to use while he or she collected her thoughts, therefore reducing feelings of pressure of the perceived need to fill silences or answer questions quickly. the pace of the sessions was slowed for participants, and increased willingness to open up and share with the counsellor in just the first one or two sessions provided a notable opportunity for a faster and easier development of trust and safety in the counselling process and in the therapeutic alliance. finally, in the case of one participant, the therapy animal helped make necessary – and slightly dreaded – therapy visits more bearable. as participant f described, “having the dog there made talking about feelings and experiences more tolerable, for sure, and i wouldn’t say i looked forward to going [to therapy] but it was definitely a lot nicer than just having to talk one- on-one,” and that the dog being there “took the pressure off” of the more direct one-on-one interaction. in creating a setting that the client perceived as less clinical, less formal, and more comforting, the participants were able to feel more relaxed in therapy and to feel more open to the process. had it been strictly the traditional “one-on-one” interaction, barriers to therapy may have existed that the presence of the therapy animal lessened or removed. theme : therapy animal characteristics and behaviour feeling heard/understood. participants explained how they felt a connection with the therapy animal, and sensed that the animals had an instinctual deep knowing, or intuition, with regards to the participant’s emotions. one participant described the experience as empathy and love: “like he was reading my face, or like he knew something about my voice or i don’t know, maybe it was like some other kinda thing that dogs sense... but he just knew i was in trouble and i was so thankful he was there” (participant a). the participant felt understood by the animal, and as participant b articulated, “it felt supportive, and like someone was on your side and understood you.” this perceived support was more readily trusted by the participant because she perceived dogs as more authentic and credible than humans, without all the obligatory social niceties that we are accustomed to. it was “easier to accept [the] animal affirming you” than the therapist, because it seemed to come from a more primal, instinctual place within the human- animal connection. emerging from this instinct was the feeling that the animal often understood what the participant needed from it. participant d describes the experience as …really validating… [the dog] understood why i needed to be so close to him, and it didn’t feel like he was listening, but it felt like he was understanding. he was enjoying both being close to me and also understanding that i needed to be close to him in that moment. one participant explained that she perceived the therapy dog to understand her because “[the dog’s] head would be down a bit, and then just very calm and something about his eyes - like he knows what you’re saying, it’s registering (participant e). a key word that kept emerging was “connection” - participants described feeling connected to the therapy animal in a way that they did not connect to the therapist or to other people. participant c articulated that there were “no expectations, [the animal] wasn’t questioning me” and explained that “the nonjudgmental aspect of the cat” created a more authentic-feeling connection than the participant felt with the therapist himself. this relationship with the animal created a sense of trust and understanding that allowed the participant to feel heard and valued in the therapy room even before a strong therapeutic alliance with the therapist had been developed. participant f stated that “there was a sense of connection between the dog and me, a general warmth... it was like he was accepting me, accepting of me and my presence, like he enjoyed my company as well.” further, having the animal there and even respond to different emotions allowed one participant to feel like “the dog was backing me up” (participant a). feeling valued in the therapy room by an animal that has no obligation to express warmth or care toward the client seemed to go a long way in enhancing the participants’ experiences of counselling. the presence of the therapy animal even increased the feelings of being heard and understood by the therapist for one participant, who explained that “it felt like [the therapist] was considering me more holistically as a person for whom animals are a big part of life... it was like, let’s see you as a person” rather than as a collection of symptoms (participant d). she went on to say that the experience led her to feel that the therapist “respected me more, by taking that extra step [of bringing the dog in]” and made her feel “trust, respect, and equality” within the therapeutic relationship. this experience strengthened the therapeutic relationship and increased the participant’s trust in the therapist. the therapy animals also seemed to respond to changes in the participants’ emotional states; one noted that “sometimes i would end up crying, so the dog would look at me and he would make a sound, because i was upset” (participant b). this again taps into the validation of such an instinctual, authentic response from an animal that has no knowledge of human socialization and expectations. another participant explained that when i was crying he was a bit more quiet, you couldn’t really hear him as much and i think also he was more close to me. that’s when i kind of petted him a bit more, and calmed myself down... [the dog was] physically closer and then i just felt a calmness in him too, so it was like he knew the change in my emotions. (participant e) the participant described feeling some level of distress to which the dog responded, and her reaction to the dog’s behaviour allowed her to feel a greater sense of calm. each of these experiences contributes to reduced anxiety in session and limited the distress a client experienced while discussing difficult experiences. this may present opportunities for educating clients about self-care and positive coping or even relaxation practices. the potential for clients feeling validated, accepted, and understood in the therapy room is significant. animal behaviours. the actual overt behaviour of the therapy animals had an important role on participants’ perceptions of the experience. while the behaviour is largely related to the above sense of feeling heard and understood, there were some key aspects of the animal’s behaviour that contributed more to the overall sense of comfort in the counselling space, and to the relationship between the participant and the therapy animal. participant a noted that “just being able to pat [the dog]... actually having him there and when he came up to me and he was really responsive... i was just kind of able to let myself just go a little,” suggesting that the dog’s invitation to engage allowed her to relax more into the present moment. the animals’ behaviour impacted participants in a way that enabled them to feel more welcome in therapy, and a greater sense of belonging. participant a explains that “[the dog] just kinda came up to me and he sort of looked at me, he went from left to right, yeah... his tail started wagging a bit.” another explained that “the dog showed that he was happy to see me... during the therapy session he would sleep on my foot” (participant b), and she went on to describe the sense of feeling softened and being able to be more vulnerable. these simple gestures on the part of the therapy animal translated to significant feelings of worth in the client. a recurring description of the therapy animals these participants engaged with was that they were calm animals. one participant even compared the dog to an assistance dog, articulating that he was “pretty chill” (participant a). another explained how the therapy dog he worked with was “super calm and [he] jumped up on the sofa next to me and would kind of like, cuddle up and i could just pet him and he was happy” (participant f). this theme of calmness may have contributed to allowing participants to feel less anxious in the counselling environment, and to more easily feel the strong connection they described. participant e explained how “[the dog] moving towards me also calmed me, as like a friend would just put a hand on you. he did that with his head.” this is a simple but incredibly powerful behaviour that only a therapy animal can do – it is therapeutic touch in a most authentic form. theme : human-animal relationships the relationship between the therapy animal and both the therapist and the client is one of the pinnacles of a client’s experience of aat. the relationship the client observes between the therapist and animal informs them of some of the therapist’s characteristics and values, while the relationship they themselves develop with the animal impacts their sense of being heard, understood, and valued within the therapy room. therapist-animal relationship. the relationship between the therapist and the therapy animal, as perceived by clients, influences the client’s perception of the therapist as a person, which has significant implications for the development of the therapeutic alliance. observing how the therapist engages or interacts with the animal communicates to the client different things that can affect their feelings of trust and safety in counselling. for the most part, observing the therapist-animal relationship seems to positively impact the client. as several participants mentioned, seeing the therapist as a pet owner made them seem more relatable, even “more human” (participants a and c), which contributed to the participants’ overall sense of comfort, safety, and trust. all participants recognized a positive relationship between the therapist and the animal, despite varying levels of overt engagement of the therapy animal. for some, the calm and relaxed counselling atmosphere communicated to them that the animal and therapist were comfortable with one another and they felt an implicit bond between the two; for others, the bond seemed more obvious than that. for one participant, the therapist told the client stories about what he does with the dog and the kind of activities they enjoyed together (e.g., going to the beach); this kind of small talk offers innocuous self-disclosure, further humanizing the therapist in the client’s eyes. by normalizing himself in the client’s eyes, the therapist was able to reach a place with the client that may well have taken longer to get to had the animal not been there. participant b explains that “in the room [the therapist] didn’t necessarily pet the dog” and that he had “more of a rough and tumble attitude with the dog,” but that the therapist focused on the dog in session when the client initiated engagement with the dog. the therapist followed the client’s lead, letting the client’s engagement with the animal determine the level of explicit involvement of the therapy animal. participant a observed the therapist and animal to be “really in sync with each other” and she articulated that “i think that had a large part to do with its effectiveness... you really felt like they were almost on an equal ground, or like they knew each other really well.” the therapist in some cases took cues from the animal and verbalized to the client his or her observations. one participant explained that “[the therapist] reaffirmed what i was going through, she was like ‘yeah, looks like you’re pretty upset, i think [the dog] can tell you’re hurting pretty close to your heart’” (participant a). this acknowledgment both validated the client’s emotions while simultaneously recognizing that the animal sensed the client’s pain and distress. having the animal’s behaviour as “evidence” may help the client believe the therapist’s validating words moreso than they would had the animal not been there. participant e described the relationship between the therapist and the animal as creating a balanced environment in which the dog provided comfort and safety while the therapist talked with the client: “the dog is more an emotional, calming tool and for me it was a way for me to open up. then [the therapist] would ask the questions and just be there.” this balance offered an opportunity to reach a depth in therapy more quickly than might have been reached without a therapy animal present. this is an important point to highlight: the dog offered safety, comfort, and a calming presence while the therapist simultaneously asked questions and helped the client open up. one participant perceived certain similarities between the therapist and the therapy dog, explaining that “they were both just very laid back... just in terms of their manner, how they carried themselves, they were both very calm” (participant f). participant d highlighted an important factor when she identified the dog’s behaviour as getting some “space” and to “check in with” the familiar person in the room, the therapist. this is important because it recognizes that the therapy animals also have emotional needs that both therapists and clients may need to be aware of, such as feeling safe and comfortable with the client in the room. this further emphasizes the importance of having a conversation with the client at the beginning of any aat counselling regarding why the therapy animal is there and what boundaries may need to be in place to honour the needs of both the client and the animal. participant d went on to explain that she could tell that “the dog trusted [the therapist]” because of its behaviour in seeking reassurance from her, which gave the client more information about the therapist as well as about the relationship between the animal and therapist. all of this provided important information to the client about the counselling environment and the therapist him- or herself that may otherwise not be available without the therapy animal’s presence. client-animal relationship. a vital piece of aat is, of course, the relationship the client has with the therapy animal. for some participants the relationship involved giving treats and attention to the animal, and others felt deep emotions such as gratitude, acceptance, and trust. it seems that there were two primary perceived functions of the therapy animal: distraction (mostly around reducing anxiety) and empathy/emotional connection (contributing to feelings such as safety, trust, validation, and being valued). the mere presence of the therapy animal created a sense of a relationship, even in the case of minimal direct interaction between the client and animal. one participant explained that it was “very comfortable… just a very nice, friendly kind of relationship” (participant e). some participants described petting the animal, offering it treats, or having the animal sit quietly near them, and others experienced more physical contact (e.g., hugging the animal or having it on their lap). regardless of the amount of overt interaction, all participants expressed a feeling of comfort within the relationship with the animal, and all described feeling that the presence of the animal enhanced their therapeutic experience. as with human relationships, with the client-animal relationship there seems to be no “ideal way” of relating. the client and animal find a dynamic that works for them both, and the result appeared to be similar among all participants. for those participants who described experiencing the animal’s presence as a distraction from anxiety and the intensity of a one-on-one interaction, the animal offered a kind of “way out” – the client could pet the animal or look at it (therefore being able to continue the conversation without having to make direct eye contact with the therapist) without feeling awkward or like they were being rude, and even silences in the room felt more comfortable for the client because they were doing something (e.g., petting a dog) while they collected their thoughts rather than feeling pressured to speak. one participant described the relationship she had with the dog as “awesome” despite no words being exchanged between them, and articulated how the “empathy and love” that she felt from the animal allowed her to feel heard, reassured, and more relaxed (participant a). she went on to say that “[the relationship] was one, i think, of gratitude.” participant d also expressed gratitude, particularly for the patience and trust the dog showed in allowing her to “really hug him and be in his space,” explaining that the dog stayed close while she sat on the floor with him. this physical expression of trust and validation provided the reassurance that the participant needed in that moment. theme : intrapersonal experiences participants described their experiences of aat as largely an internal shifting of emotions and perceptions of the therapeutic process as a result of the presence of the animal. beyond the experiences of calming and increasing trust as discussed in previous themes, participants explained that in the aat environment, they were able to share more about themselves and their experiences than they otherwise would have, or that would have taken longer to get to. everything that went into the aat experience (e.g., enhanced feelings of safety and validation, a unique perspective on the therapist, reduced self-consciousness, increased self- awareness) contributed to the participants’ ability to share more, and in some cases different, information with the therapist than they otherwise would have. these intrapersonal experiences fall into four main categories: validation, self-awareness, perception of the therapist, and decreasing shame and self-consciousness. validation. all participants expressed that the therapy animal contributed to a sense of validation and being valued, by both the therapist and the animal. for some it was the animal’s behavior – such as resting their head on the participant or moving closer when emotions were expressed – and for others it made the therapist’s validation more believable when it was “backed up” by the therapy animal’s reactions. participant a went on to describe her experience with feeling more able to open up with the added safety and comfort the therapy animal provided: “[the therapist] was able to get in there and be like, how do you really feel, and just, you know, confirming that and she was able to kind of redirect it and be like ‘okay, so what are you thinking about this, and what are you thinking about that.” in this way she was able to reach a place of openness and comfort with the therapist that may not have been reached or taken longer had the dog not been there. all participants described worrying less about being judged and therefore able to focus more on the therapeutic process itself. participant d explained that the fact that the therapist thought of her when deciding to bring the dog in for their session communicated that the therapist knew her well, respected her, and was considering her “more holistically as a person” rather than simply a client with a mental illness. self-awareness. several participants described gaining deeper insight and self-awareness related to the therapy animal’s presence and/or behaviour. for one aat client, participant d, she learned that she could advocate for herself and for her needs when, in a moment of more intense emotions, she asked the therapist if she could sit on the floor with the dog because she felt she needed to be closer to him. further, through interactions with the therapy animal, she describes that this experience “[helped me] make more connections between the relationships that i’ve had in my everyday life,” allowing her to learn more about herself and her interpersonal relationship dynamics. one participant articulated her own shift in how she perceived therapy when she said “i remember it being pretty immediate, me going in being like ‘this is stupid’ and then pretty readily accepting the position, being like ‘hmm i can do this’” (participant c). seeing the therapy animal there made her feel more comfortable and more motivated and aware of her ability to handle the therapeutic experience. some participants described becoming more aware of how alternative coping strategies benefit them; participant e realized that, as she petted the animal, she was able to breathe and express more honest feelings, made aware that the animal helped her open up and collect her thoughts. another participant explained that the experience “taught me that i can cope using natural mechanisms [as opposed to medication] and debriefing or using natural outlets like animals and things like that” (participant d). recognizing the natural effect that interacting with a therapy animal had on her feelings of anxiety and distress helped the participant realize that she has the skills to cope in a healthy manner. for one participant, interacting with the therapy animal and therapist helped her gain insight into her self-awareness: “i didn’t realize how out of touch i was with myself... and i don’t know if i would have been able to do that if i was just talking one-on-one” (participant a). two participants (participants e and f) described the calming nature of the therapy animal as having the effect of helping them process and collect their thoughts more clearly. participant e was even noticing her attention was drawn to her body language and tone of voice, wondering how the dog might be experiencing her in the room. clients’ shifting perceptions of therapist. all participants described perceiving the therapist as “more human” and less of a person in power. by bringing in the therapy animal, the therapist is suddenly seen as a pet owner, an animal lover, something that many clients can relate to or appreciate. participant b described this as there being a common interest between herself and the therapist – being dog owners – and this helped “break the ice” and allowed her to feel the connection on a more human level, as opposed to a more clinical experience between herself and a professional. she felt more comfortable with the therapist right from the get-go, which further enhanced her therapeutic experience. participants d and e expressed feeling a difference in the power dynamic they were expecting versus what they actually felt – the animal in the room made it seem “more like speaking with a friend” than a professional or stranger (participant e). a piece worth noting, although not applicable to all clients of aat, was that participant b felt more physically safe in the room with a male therapist she had never met before, particularly given her history of trauma. having the animal there eased her discomfort and enabled her to, again, connect with the therapist on a more human level without the heightened anxiety of being alone with a potentially triggering person, which might interfere with the therapeutic process. decreased shame and self-consciousness. a decrease in felt shame and self- consciousness related to physical appearance, certain experiences, and the way they spoke was a recurring theme across participants. for some it involved feeling “less shame about some of the questions” she may be asked and she “wasn’t as worried about how i appeared in the room with another person because it’s socially acceptable to be, you know, putting focus on the animal” (participant d). the animal offered a neutral focal point that helped this aat client feel less preoccupied with her appearance and responses to questions. in moments of silence or heightened embarrassment, participants were able to focus on the animal, interact with it in some way, which served to decrease this sense of awkwardness or shame and allowed them to stay more engaged in the process. other participants also noted feeling “not as self-conscious” (participant f) with the dog in the room, particularly given that “it was really uncomfortable…to have to talk about the things that were bothering me” (participant c). this third party that provided validation and comfort made it easier for clients to share their feelings without as much shame as they may otherwise have experienced. finally, one participant said something that stands out as an area requiring further exploration, as it indicates the significance of the relationship between client and therapy animal, as well as the potential of this relationship for modeling interpersonal interactions, triggering relational feelings, and more. participant d described a moment during a therapy session in which a sense of rejection was triggered in her when the dog walked away for a moment: at one point i had been petting the dog, and of course this was the dog’s first time meeting me, and the dog walked over towards the therapist and i felt kinda sad, cus i was like ‘i need you right now, come back over to me!’ it was almost this sense of rejection when it was like... you know, i wish the dog was giving me all of its attention, so when he walked away for some space, i felt like i needed him to focus on me. this clearly indicates that an opportunity emerged for exploring the feeling of rejection and contexts in which this has occurred in the client’s life, and had the client articulated these feelings to the therapist it may have resulted in a rich and therapeutic exploration. the participant went on to explain that “when i think about it now i don’t feel like ‘oh the dog rejected me and that hurts my feelings,’ but in the moment it was kinda like ‘but what am i gonna do without you?,” indicating that she understood that the feeling triggered was not directly related to the dog’s behavior itself but that it tapped into deeper underlying feelings and experiences. again, the potential for using the client’s interaction and relationship with the therapy animal is significant, and is something that further exploration would help improve our understanding of, thus expanding the ability of aat practitioners to maximize the benefits of having an animal engaged in the therapeutic process. all of these intrapersonal experiences contributed to an overall sense of being more open, willing, and engaged in the entire therapeutic experience as further described in the final theme. theme : engagement in therapy much of what participants found beneficial about aat involved the contrast in what they perceived talk therapy to be like, and what their actual experiences of it were. they all expressed feeling a bit nervous going in – anxious about the formality and potential intensity of a one-on-one session, worried about things like making eye contact and filling awkward silences – but when they arrived and noticed the animal present, it shifted both their perception and their experience of the therapy process. one significant finding was the shift in their perception of the therapist him- or herself. the clients saw the therapists as pet owners, animal lovers, and these allowed them to perceive the therapists as more “human” and therefore more relatable. for several of the participants, this played a significant role in their comfort engaging in the therapeutic process. participant a explained there was “something different about it... it didn’t seem as formal as just ‘hi let’s just come into this room and chat’,” that the intensity lessened and “it just felt a little less serious, rather than just one-on-one.” with this decrease in intensity, she felt “able to reach a place of openness and comfort with [the therapist] that may not have been reached or taken longer had the dog not been there.” another participant stated that she “would have done [therapy] for a lot less time than if the cat wasn’t there… i think it wouldn’t have been successful had the cat not been there. i probably wouldn’t have been very involved in the whole process” (participant c). going back to the issue of self-advocacy, by recognizing her needs with regards to interaction with the therapy animal, and in being able to express those needs to the therapist, participant d learned that she could be an equal member of the therapeutic process and be involved in the direction the therapy took. as she explains, it “made me more likely to ask for things that i need or that would make the experience easier, or to problem solve with [the therapist].” the therapeutic process itself felt more manageable with the therapy animal in the room. some described the animal as providing “an easy out if i need to take a break from the conversation” if it got too intense (participant d), while others explained that taking a few minutes to play with the animal provided her the space she needed to be able to refocus and feel more present in the process (participant e). participant a also alluded to the difference having an animal present made with regards to the conversation itself: you can go around in circles a lot when you chat [with people]... but there was just something that sort of broke that with marley, so i think that’s why it was so effective... it wasn’t just the same old conversation happening again and again. the therapy animal being present also allowed some participants to feel “more open to responding” and “more willing to open up” (participant e). they felt able to share things and do deeper in to feelings more quickly than they believe they would have been able to without the animal there. further, they felt more able to take their time in responding, to collect and process their thoughts, without the awkwardness that may have accompanied that silent space had they not been able to pet or interact with the animal in some way during that time. overall, the presence of the animal in the therapy session opened up a dialogue between the client and therapist, allowing them to develop a trusting relationship more quickly, enabled the client to feel more empowered in their role, and provided a window for both the therapist and client to explore deeper feelings, issues, or patterns. chapter discussion this chapter explores the findings of the study in relation to existing knowledge of animal- assisted therapy in counselling. limitations of the study, suggestions for future research, and implications for practice are also addressed. summary of results using an interpretive phenomenological approach (langdridge, ), this study aimed to better understand clients’ experiences of counselling with a therapy animal present. six participants were interviewed, and upon analysis of the transcriptions, five main themes emerged: a comfortable environment, therapy animal characteristics and behaviour, human- animal relationships, intrapersonal experience, and engagement in therapy. themes , , and also had subthemes. theme – a comfortable environment – focused on the importance of comfort and safety in the counselling room, and how the presence of a therapy animal both contributed to and expedited the process of developing that comfort and safety. the presence of a therapy animal also contributed to an environment in which the clients felt more in control of his or her experiences in the room; essentially, the animal provided a tool for the client in terms of being able to pet, look at, or talk to the animal to help ease anxiety. participants noted their anxiety decreased, their fear of the counselling process decreased, and their ability to be present in the room increased. participants who had apprehension about attending therapy described a sense of relief when they discovered the animal there. on a more straightforward front, the animal served as an ice-breaker and a focal point of discussion as the participant met the therapist for the first time. the therapy animal characteristics and behaviour contributed to the client’s sense of being heard or understood in the therapy room. participants explained that they sensed the animal has a deep knowing, or intuition, with regards to the participants’ feelings and state. this was communicated to the participants by the animal’s movements or demeanour. the animals were all described as calm, friendly animals who validated the participants’ emotions and needs. a wagging tail, a head resting on a lap, or a dog curled up on the couch next to the participant – all of these behaviours contributed to the connection the participants felt with the therapy animal, and this connection played a significant role in the participants’ experience of therapy. the human-animal relationship also emerged as a vital piece of the aat puzzle, with participants’ describing the relationship between the therapist and the animal as well as their own relationship with the animal as significant. witnessing the therapist engage with the animal – a vulnerable, open creature – communicated to participants the therapist’s compassion and increased the sense of safety. participants also described the relationship as making the therapist seem more relatable, more human, thus creating an environment less of a clinical nature and more of a friendly, relaxed nature. innocuous self-disclosure such as stories of how the animal acts at home and activities the therapist and animal enjoy together further normalized the therapist in the participant’s eyes, and facilitated the development of a safe and comfortable rapport. the participants’ relationships with the animals were all described as positive, with some describing petting and physically interacting with the animal, and others experiencing the relationship as more implicit. participants described their experiences of aat as contributing to a shift within themselves of their emotions and perceptions of therapy and therapists. the culmination of the first three themes resulted in an ability for the participant to adjust their perception of the therapeutic focus and to engage more fully in the experience. participants described sharing more than they thought they would, being more comfortable answering tough questions, and remaining in therapy longer than they might have had the animal not been there. participants described feeling validated, more self-aware, and experienced less shame, self-consciousness, and judgment. the intensity of the therapeutic experience felt lessened and therefore therapy felt more accessible and doable for participants. one participant even reached a place of a greater ability to advocate for herself and for her needs within the therapy room. contribution to wider body of knowledge this study contributes to the existing knowledge of aat and counselling psychology literature in a number of ways. the paucity of research that exists exploring aat in the context of counselling psychology leaves a gap in the literature that this study has attempted to address. more specifically, no studies honour the clients’ voices in a way that seeks to understand their lived experiences of aat. because previous research on the human-animal bond and the effects of interacting with animals in other fields has neglected to include the client’s perspective, (anderson, ; headey, ; zilcha-mano, mikulincer, & shaver, ), it follows that delving into the meaning of these experiences for the clients themselves may offer important information for aat practitioners moving forward. this study contributes to a deeper understanding of these clients’ experiences of aat in counselling. ultimately, research of this kind may contribute to the development of a framework or guidelines for practitioners who are actively using aat. further, developing a foundation of empirical research for any therapeutic approach is a valuable step in that approach becoming more well-known, better understood, and more effective. reduced anxiety, self-consciousness, and fear of judgment. an overarching effect of aat as described by participants in this study is the significant reduction in negative feelings in therapy, including anxiety, self-consciousness, and fear of judgment. consistent with previous research that found the presence of animals reduces people’s anxiety in medical, paramedical, and psychiatric settings (barker & dawson, ; chandler, ; siegal, ; walsh & mertin, ), responses from participants in the current study indicate that this is also reflected in the counselling setting. not only did the therapy animal act as an ice-breaker, starting the first session with a more informal and relaxed conversation, but participants also reported an immediate reduction in anxiety upon realizing the therapy animal was present, as well as a general reduction of stress throughout their time with the aat clinician. further, participants explained that, with the animal present, their feelings of self-consciousness and their fear of being judged by the therapist decreased, opening the door for more depth in their work as well as an accelerated development of therapeutic rapport. this is a promising finding in that this expedited a sense of trust and safety that may enable the counselling process to facilitate growth and insight within the client at a more rapid rate than with traditional therapy. this possibility is consistent with previous findings that suggested aat facilitates accelerated outcomes in therapy (levinson, ; sockalingam, ). on a more critical level, it may provide the trust, comfort, and safety a client needs to share feelings of being in danger, either self-inflicted or from an outside perpetrator. for example, clients who are suicidal, experiencing ongoing abuse or violence, or in other urgent situations may feel more able to share their thoughts and experiences earlier on in the therapy process, and thus receive the support they need sooner. this increased level of safety and comfort may allow much-needed resources and care to be allotted to people who need it sooner than would be possible if that same level of comfort in the counselling setting had to be developed over a longer period of time. therapeutic touch played a significant role for several participants in this study in terms of contributing to lessened anxiety. the behaviour of the therapy animal – be it placing a head on a knee, moving closer to the client, curling up next to the client, or simply indicating that the animal was enjoying being petted – was a way for the client to receive physical touch in a very therapeutic way. these experiences echoed those findings of altschiller ( ) and chandler ( ), both of whom made the argument that aat provides the opportunity for therapeutic touch that is not always accessible for clients in a more traditional counselling setting. in the present study, this touch by the animal further validated participants’ emotions, as therapy animals were reported to respond when participants cried or were more distressed. more trusting of therapist. this reduction in anxiety experienced by all participants may very well contribute to a more solid foundation on which to build a healthy therapeutic relationship. participants expressed how the presence of the therapy animal allowed them to perceive the therapist as more “human” and, thus, more trustworthy. it removed some of the perceived power dynamic of the professional-client relationship, leaving the client feeling more on equal footing with the therapist. this in turn facilitated a speedier development of therapeutic alliance. this finding is consistent with levinson’s ( ) work in which he observed accelerated development of therapeutic rapport when therapy animals were involved. this rapport is further developed as therapists are able to share stories about the therapy animal or the activities they do with the animal in a way that normalizes the therapist, even humanizes them and contributes to the sense of the therapist and client being equals. many researchers agree that up to % of the outcome of therapy is due to the therapeutic relationship (lambert & ogles, ). it follows, then, that if we can enhance and accelerate the development of rapport we can facilitate faster, potentially more effective outcomes. participants in this study articulated how their relationship with the therapy animal translated to their relationship with the therapist. feeling safe and comfortable in the therapy environment was due in part – particularly at the beginning of therapy – to the animal’s presence. several researchers have stated that, in many cases, therapy animals may serve as transitional objects: clients develop a primary bond with the animal relatively quickly, and this relationship then transitions to the therapist him- or herself (levinson, ; martin & farnum, ; parish- plass, ). in this way, not only is the relationship with the therapist built more quickly, but there may be more credibility to the relationship as the primary bond being with the animal, the client observes the mutual trust and caring between the therapist and the animal. this then increases the client’s trust that the therapist will show him or her the same kind of care and respect. parish-plass ( ) went so far as to suggest that when a client witnesses a therapist interacting with an animal in a caring, nurturing way, therapy becomes less intimidating for that client. this was certainly echoed by participants of this study, recognizing that if the therapist was viewed as an “animal person,” the participant perceived them as inherently more trustworthy and humane. chandler ( ) states that engaging with an animal is both more inviting and less intimidating that interacting with a human, much less with a human we have just met. when the animal is present in a therapeutic setting, the sense of safety is increased before the therapeutic rapport is built with the therapist. again, this foundation of safety and comfort is established much sooner and more implicitly than depending solely on the therapist-client relationship from the get-go. participants in this study described this phenomenon, articulating how their comfort level in the therapy room grew relatively quickly once they knew the therapy animal was there, and how this helped them feel safer with the therapist him- or herself. before that therapist-client relationship is solidified, validation and acceptance from the therapist seemed to be easier to “buy into” for the participants when it was backed up by the therapy animal’s behaviour. the unconditional love, warmth, and acceptance that the animals showed toward participants communicated to them their worth and value, and this finding is consistent with levinson’s ( ) observations. with an accelerated development of rapport, a safe and trusting environment, the client feeling on more equal ground with the therapist, and the opportunity for safe and healthy therapeutic touch, it is no surprise that these participants felt more highly engaged in the therapeutic process than they would have been had the animal not been present. participants reported being more willing to open up about their thoughts and experiences, more motivated to engage in the process, and able to articulate their thoughts more clearly. this finding is consistent with those of previous researchers (kovacs, kis, rozsa, & rozsa, ; levinson, ), and indicates the potential of a richness of therapeutic work that may be possible sooner with the help of aat. one author even suggested that this client-animal connection prompted her to encourage clients to engage more with animals outside of therapy (chandler, ). one participant in this study “fell in love” with cats following her experience with a therapy cat, and since then has found great joy and fulfillment in having a cat of her own. some participants mentioned that the therapy animal was helpful in part because it offered a break or a distraction from the difficult emotions they were feeling. one caution to note following this study, however, is the potential drawback of having a therapy animal present that may serve as an unhealthy distraction for the client. several participants indicated that the animal allowed them to refocus themselves or to distract themselves from negative emotions. it is important for therapists practicing aat to distinguish between healthy coping and/or emotion regulation using the therapy animal, and avoidance of difficult emotions. skilled aat practitioners should be able to reflect to clients the role the therapy animal may have in that individual’s therapy, as well as help the client recognize the difference between coping in a healthy way and avoiding necessary emotions. limitations and strengths the purpose of this study was to explore individuals’ experiences of animal-assisted therapy in a counselling setting. thus the goal was to conduct a study that would provide insight into the lived experiences of these particular aat clients with the goal of expanding our knowledge and understanding of aat. however, there are some limitations inherent in this study, in part due to the nature of the chosen methodology. first, no generalizations could be made regarding all clients of aat, because the findings of this study are limited to the experiences of the six individual participants. while we can apply this deeper understanding of the experience of aat for these clients to our existing body of knowledge, we cannot predict that other aat clients would experience similar benefits. further, participants in this study were volunteers who responded to advertisements about a study looking at aat. this means that this sample might be comprised of individuals who have a greater interest in aat than other clients might, or more strongly believe in it as a method of counselling, which may have impacted the findings. lastly, this study was conducted from a western cultural standpoint; thus, findings should only be considered within this cultural context. a strength of this study is its relatively homogenous sample. interpretive phenomenological analysis requires that the sample be fairly homogenous in order to ensure the research question is of significance to participants, and interesting similarities and differences may emerge within this homogenous group. in this study’s sample of six participants, five were female, five were between the ages of and years old, and five were caucasian. participants had varying degrees of experience with animals prior to their aat involvement. the most significant strength, however, is this study’s continual grounding in the narratives of the individuals who participated, remaining true to their unique experiences by consistently referencing the transcripts throughout analysis. the focus was to truly explore the experiences of these six participants, and it was this honouring of their own voices that allowed their experiences to come through. suggestions for future research there is a paucity of research exploring aat in counselling settings, thus warranting further research from a multitude of perspectives and approaches. this study offered a broad perspective on clients’ experiences of aat, which provides a starting foundation recognizing the positive impact of therapy animals in counselling – however, a more in-depth exploration of these impacts may be helpful in developing future guidelines and/or regulations for aat practitioners, and for the therapy animals as well. for one participant, the experience of her relationship with the therapy animal tapped into some deeper underlying issues regarding her history of interpersonal relationships, and this had the potential to offer rich therapeutic fodder if she had voiced these feelings to the therapist. research that looks more specifically at aat practitioners who more actively engage their therapy animals and use the client-animal relationship as a tool for therapeutic exploration may result in an even deeper understanding of the potential of aat in counselling. finally, research exploring the meaning of aat for the counsellors themselves may provide more information and further understanding of how aat is used in counselling, and why therapists are choosing to engage animals in therapy. a study exploring these questions may provide important information and add to our growing body of knowledge of the effects and potential of aat in counselling. implications for practice this study’s findings suggest implications for counselling practice for both aat practitioners and non-aat practitioners, as the underlying themes offer suggestions that may be achievable in ways other than having a therapy animal present. remarkably, only one of the six participants was made aware that an animal would be present prior to the initial session. although this was not a significant barrier for the individuals who participated in this study, issues around safety (both physical and emotional/psychological) must be considered, such as allergies, phobias, or past trauma, to name a few. ethically, clients should be made aware that an animal may be present, and presented with the opportunity to either choose a different therapist, or to be offered the option of the animal not being involved in therapy for that particular client. for one participant, a history of dog-related trauma made her pause when she discovered the therapy dog, but thankfully in her case the outcome was positive in that it allowed her to develop trust and safety with a larger dog. a significant implication for counselling practice that arose is the importance of clients perceiving therapists as more human than the clinical perception they may hold of therapists initially. while the therapy animal facilitated this perspective shift for participants in the study, there may be other ways of “humanizing” or normalizing therapists for clients in order to help promote the development of therapeutic safety and rapport more effectively. the presence of the animal seemed to expedite this comfort and safety, thus creating opportunities to do deeper work sooner in the therapeutic process than might otherwise have been possible. with this in mind, aat may be particularly effective in areas such as trauma counselling or working with children or adolescents. finally, as one participant’s experience indicated, the client’s experience of the relationship and interaction with the therapy animal may offer opportunities to springboard to exploring deeper underlying interpersonal issues. participant d’s experience of what she perceived to be rejection from the dog may have been the opening for a rich exploration of her experiences of rejection in other relationships in her life. being attune to the client’s relationship with the therapy animal as well as 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( ). pet in the therapy room: an attachment perspective on animal-assisted therapy. attachment & human development, , - . doi: . / . . appendix a: chandler’s animal-assisted therapy techniques ( , p. ) . therapist reflects or comments on client’s relationship with therapy animal. . therapist encourages client to interact with therapy animal by touching or petting therapy animal. . therapist encourages client to play with therapy animal during session. . therapist encourages client to tell therapy animal about client’s distress or concerns. . therapist and client engage with therapy animal outside of a traditional therapeutic environment; i.e. taking therapy animal for walk. . therapist interacts with therapy animal by having animal perform tricks or follow commands. . therapist encourages client to perform tricks with therapy animal. . therapist encourages client to perform commands with therapy animals. . therapist comments or reflects on spontaneous client-animal interactions. . information about therapy animal’s family history (e.g., lineage, breed, species) is shared with client. . other history related to therapy animal is shared with client. . animal stories and metaphors with animal themes are shared with client by therapist. . therapist encourages the client to make up stories involving the therapy animal. . therapist uses the client-therapy animal relationship, such as, “if this dog were your best friend, what would he know about you that no one else would know?” and/or “tell rusty (therapy dog) how you feel and i will just listen.” . therapist encourages client to recreate/reenact experiences where therapy animal plays a specific role. . therapy animal is present without any directive interventions. . therapist creates specific structured activities for a client with a therapy animal. . therapy animal engages with client in spontaneous moments that facilitate therapeutic discussion. appendix b: chandler’s animal-assisted therapy intentions ( , p. ) . building rapport in the therapeutic relationship. . facilitating insight. . enhancing client’s social skills. . enhancing client’s relationship skills. . enhancing client’s self-confidence. . modeling a specific behaviour. . encouraging sharing of feelings. . behavioural reward for client. . enhancing trust within the therapeutic environment. . facilitating feelings of being safe in the therapeutic environment. appendix c: recruitment poster appendix d: email to aat practitioners a place of mind t h e u n i v e r s i t y o f b r i t i s h c o l u m b i a [date] dear [aat practitioner], my name is jess owen, and i am currently a master’s student in the counselling psychology program in the university of british columbia’s faculty of education. i am conducting my thesis exploring the lived experience of clients of animal-assisted therapy. the goal of my research is to better understand the client perspective of this intervention, and how clients experience and make sense of this approach. the reason i am writing you is because on your [website/advertisement], you explain that you regularly incorporate an animal into your counselling practice. although i cannot ask you to talk to your current clients about my study, i am wondering if you might be able to send the recruitment flyer (which is attached to this email) by email to previous clients of yours with whom you practiced animal-assisted therapy. this research has been approved by the university of british columbia behavioural research ethics board, as well as the department of educational and counselling psychology and special education faculty. if you would like any further information about this study, please do not hesitate to contact me by email at jess.owen@gmail.com. you can also contact my faculty supervisor and principal investigator of the study, dr. marla buchanan, at -xxx-xxxx or by email at xxxx@ubc.ca. thank you so much! sincerely, jess owen faculty of education department of educational and counselling psychology, and special education main mall vancouver, bc canada v t z phone fax marla.buchanan@ubc.ca appendix e: screening questions participant screening questions prior to asking the following screening questions, the purpose of the research as well as the research process will be described to the potential participant. . how old are you? . how did you find out about the study? . have you ever been in counselling with a therapist using an animal in the room? . when did counselling with that person end? . are you comfortable having an in-depth conversation in english? . in what city are you currently living? . if you decide to participate, it would involve meeting on two separate occasions for approximately to minutes each time. would this be okay with you? . why do you want to participate in this study? . do you have any questions for me about the study or your participation? appendix f: interview protocol the following questions were asked in order to generate discussion and collect the information required to address my overall research question. this protocol is not exhaustive, as the semi- structure interview was guided by the participants’ stories. the questions fall under three categories: ( ) seeking an aat counsellor, ( ) the experience of aat, and ( ) issues of therapy termination. research question: what is the meaning of the lived experience of clients who have engaged in animal-assisted therapy? seeking an animal-assisted therapy counsellor . what drew you to seek services from a counsellor who practices animal-assisted therapy? a. did your previous experiences with animals guide this decision? b. did another person (e.g., family or friends) suggest or encourage you try animal- assisted therapy? the experience of animal-assisted therapy . what was your experience of animal-assisted therapy? a. how did the therapist use the animal in the therapy room? b. what stood out to you as the most noteworthy or meaningful part of having the animal in the room? c. were there any limitations that you felt having the animal in the room presented? d. tell me about your relationship with [the therapy animal] . what do you perceive the role of the animal to have/have had in your therapy process? issues of therapy termination . what was your experience of the termination process given your relationship with the therapy animal? a. did you do something special to say goodbye to the therapy animal? throughout the interview, these probing questions will be asked to gain clarify and insight into the participants’ stories and to follow up on themes that may have emerged in their narratives. appendix g: consent form department of education and counselling psychology, and special education the university of british columbia consent form title of the study: understanding counselling clients’ lived experiences of animal-assisted therapy principal investigator: dr. marla buchanan, phd., associate professor, department of counselling psychology, the faculty of education at the university of british columbia (ubc). contact information: -xxx-xxxx co-investigator: jess owen, m.a. student, department of counselling psychology of the faculty of education at ubc. contact information: -xxx-xxxx this research study is part of jess owen’s thesis requirement for completion of a master’s of arts (m.a.) in the counselling psychology program. why are we doing this research? you are being invited to take part in this research study because you have been a client of the unique counselling approach of animal-assisted therapy. we want to better understand what animal-assisted therapy is like from the client’s perspective. we want to learn about clients’ experiences specifically, rather than the counsellors’, because we believe that clients have a unique perspective on how having an animal in the room with you during a counselling session impacts your experience of therapy. what happens if you agree to participate? if you decide that you would like to participate in this study, we will ask you to meet with us on two separate occasions for about minutes each time. we will meet at the university of british columbia or, if you live on vancouver island or if getting to ubc is difficult for you, we will meet at a private, quiet location that would be more convenient, such as a local library. when we first meet, we will ask you to fill out a form with basic questions about yourself. we will then have an in-depth conversation about your experiences of animal-assisted therapy. both interviews will be audio-taped for later analysis. at our second interview, the process will be very similar, with follow-up questions to help us gain a clearer, deeper understanding of what your experience was like. near the end of the study, i will contact you once more to go over my findings with you to ensure that my understanding is correct and represents your experiences accurately. study results: the findings of this study will be reported in a graduate thesis, and may also be shared at conferences and meetings, or published in articles or books. however, your name and identifying information will not be mentioned in any of these areas. upon completion, this thesis will be a public document available through the ubc library. potential risks: we do not think there is anything in this study that could harm you. however, some of the questions we ask might be upsetting for you. if this is the case, or if you consider a question to be too personal and you do not feel comfortable answering, you have the right not to not answer. you only need to talk about what you are comfortable discussing. you are free to stop the conversation or withdraw completely from the study at any time. you will be provided with a list of community resources that can provide support for you should you feel the need. potential benefits: by participating in this study, you will be contributing to a better understanding of how clients of animal-assisted therapy experience this process, which will help guide future counsellors in how to most effectively incorporate a therapy animal into their practice. you will also get a chance to explore what your personal experience was, which many people might find beneficial and contribute to their personal growth and self-awareness. confidentiality: all information that we collect is kept secure and confidential. information that discloses your identity will not be released without your consent unless required by law. hard copies of data are kept in a locked filing cabinet at ubc, and digital copies of interviews are kept in a password-protected file. your name will be replaced with a code, and only the two investigators listed above will have access to the data. after five years, all data will be destroyed. compensation for participation: in recognition of your time and contribution, you will receive a $ honorarium. contact for information about the study: if at any point you have any questions about this study, please contact the principal or co-investigator at the contact information provided above. if you have any questions regarding your rights as a participant, please don’t hesitate to contact the ubc office of research services at - - , or toll-free at - - - . consent and the right to withdraw: taking part in this study is entirely up to you. you have the right to refuse to participate in this study. if you decide to take part, you may choose to withdraw from the study at any time, without giving a reason and without consequence.  your signature below indicates that you have received a copy of this consent form for your own records.  your signature indicates that you consent to participate in this study. ____________________________ _________________________ participant signature date ____________________________ participant name (please print) signature of investigator: these are the terms under which i will conduct this study. ____________________________ _________________________ signature of investigator date appendix h: demographic information form participant demographic information please answer the following questions about yourself in the blank spaces provided, or by circling the response that best fits for you. if at any point you have any questions or need clarification, please feel free to ask. if there are any questions that you do not feel comfortable answering, you have the right to choose not to. all information provided below will be kept completely confidential. . date of birth: ______________________ . how old are you? ___________ . what gender do you identify as? __________________ . current city of residence: _______________________ . ethnicity: __________________________ . what were the general dates that you were a client of a counsellor using animal-assisted therapy? ___________________ to ___________________ . how did you hear about this study? ___________________________________________ . what made you decide to learn more about it? __________________________________ thank you!  appendix i: list of resources for participants thank you for your participation in this study! sometimes talking about your experiences of therapy can bring up some uncomfortable or upsetting thoughts or feelings. if this is true for you and you feel the need to talk to someone and get support, feel free to contact one of the resources listed below: . for lower mainland residents, the university of british columbia’s new westminster counselling clinic offers free counselling services from september to june. all counselling is provided by students in the ubc master’s and doctoral programs in counselling psychology. for more information or to book an appointment, please call ( ) xxx-xxxx. . for victoria residents, the esquimalt neighbourhood house offers free counselling services, provided by trained volunteers. to learn more or to book an appointment, feel free to call them directly at ( ) xxx-xxxx. . for students of the university of british columbia, university of victoria, simon fraser university, or other post-secondary institutions: you have access to free counselling services on campus. a. ubc counselling services, vancouver campus: ( ) xxx-xxxx b. uvic counselling services: ( ) xxx-xxxx c. sfu counselling services: ( ) xxx-xxxx © the author(s) . published by oxford university press on behalf of the gerontological society of america. all rights reserved. for permissions, please e-mail: journals.permissions@oup.com. s review article evidence-based nonpharmacological practices to address behavioral and psychological symptoms of dementia kezia scales, phd, sheryl zimmerman, phd, , ,* and stephanie j. miller, msw phi, bronx, new york. school of social work and cecil g. sheps center for health services research, the university of north carolina at chapel hill. *address correspondence to: sheryl zimmerman, phd, cecil g. sheps center for health services research, university of north carolina at chapel hill, martin luther king jr. blvd., chapel hill, nc . e-mail: sheryl_zimmerman@unc.edu. received: march , ; editorial decision date: september , decision editor: beth a. kallmyer, msw abstract background and objectives: to draw from systematic and other literature reviews to identify, describe, and critique non- pharmacological practices to address behavioral and psychological symptoms of dementia (bpsds) and provide evidence- based recommendations for dementia care especially useful for potential adopters. research design and methods: a search of systematic and other literature reviews published from january through january . nonpharmacological practices were summarized to describe the overall conceptual basis related to effective- ness, the practice itself, and the size and main conclusions of the evidence base. each practice was also critically reviewed to determine acceptability, harmful effects, elements of effectiveness, and level of investment required, based on time needed for training/implementation, specialized care provider requirements, and equipment/capital requirements. results: nonpharmacological practices to address bpsds include sensory practices (aromatherapy, massage, multi-sen- sory stimulation, bright light therapy), psychosocial practices (validation therapy, reminiscence therapy, music therapy, pet therapy, meaningful activities), and structured care protocols (bathing, mouth care). most practices are acceptable, have no harmful effects, and require minimal to moderate investment. discussion and implications: nonpharmacological practices are person-centered, and their selection can be informed by considering the cause and meaning of the individual’s behavioral and psychological symptoms. family caregivers and paid care providers can implement evidence-based practices in home or residential care settings, although some practices require the development of more specific protocols if they are to become widely used in an efficacious manner. keywords: behavioral and psychological symptoms of dementia (bpsd), nonpharmacological, dementia care, recommendations, evidence, review behavioral and psychological symptoms of demen- tia (bpsds) are among the most distressing sequelae of alzheimer’s disease and related dementias. they include agitation, aberrant motor behavior, anxiety, irritability, depression, apathy, disinhibition, delusions, hallucina- tions, and sleep or appetite changes (cerejeira, lagarto, & mukaetova-ladinska, ). up to % of persons living with dementia experience at least one bpsd, the most com- mon being apathy, depression, irritability, agitation, and anxiety (steinberg et al., ). bpsds result from changes in the brain in relation to characteristics of the social and physical environment, as explained by three complemen- tary conceptual models described below. in the material that follows, the focus is on modifiable factors in the social the gerontologist cite as: gerontologist, , vol. , no. s , s –s doi: . /geront/gnx d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust mailto:sheryl_zimmerman@unc.edu?subject= and physical environment, which is not to minimize the important role of unmodifiable neurodegeneration associ- ated with dementia (kales, gitlin, & lyketsos, ). the competence-environmental press framework conceives of bpsds as reflecting the interplay of cogni- tive capacity and external environmental stressors; sim- ply stated, environmental forces influence (“press” on) an individual’s psychological state and evoke a behavio- ral response (lawton & nahemow, ). for example, when confronted with bath water that is an uncomfortable temperature, a person living with dementia may strike out rather than convey discomfort through words. the progres- sively lowered stress threshold model expands the concept of press. it suggests that environmental antecedents pro- duce stress, which is met by a coping response that is com- promised by the progressive impact of dementia; bpsds emerge as environmental demands exceed stress-tolerance or coping thresholds (hall & buckwalter, ). a behav- ioral example explained by this model is an individual who becomes agitated in response to an environment made noisy through overhead speakers and persistent talk. the needs-driven dementia-compromised behavior model conceives of bpsds as an attempt to communicate an unmet need; they reflect a response to antecedent environmental or social stimuli based on person-specific characteristics such as personality and cognitive and functional status (algase et al., ). within this framework, bpsds are considered meaningful expressions, ranging from disengagement (e.g., apathy) to mild discomfort (e.g., pacing) to urgent need (e.g., physical aggression). as an example, a person living with dementia who “wanders” may be communicating the need to leave a situation that is causing mild anxiety. if the need is not addressed, symptoms will persist and may become more severe (kovach, noonan, schlidt, & wells, ), perhaps escalating from wandering to exit seeking. understanding the triggers of bpsds has allowed for the development and testing of social and environmental practices (i.e., interventions or treatments) to reduce or eliminate those symptoms. such practices are especially desirable given that antipsychotic and other psychotropic medications are generally contraindicated for the treatment of bpsds; not only is there is limited evidence of benefit (sink, holden, & yaffe, ), but the use of antipsychotic medications to treat this population is associated with higher risk of myocardial infarction (pariente et al., ), stroke (douglas & smeeth, ), and mortality (kales et al., ). in fact, regulations state that antipsychotic medications should be considered to treat bpsds only in instances when the symptoms present a danger, and only after “medical, physical, functional, psychological, emo- tional, psychiatric, social and environmental causes have been identified and addressed” (cms, ). similarly, physical restraints are contraindicated to address bpsds, as they can result in injury and negatively affect cognition, mood, and opportunities for social interaction (scherder, bogen, eggermont, hamers, & swaab, ). it is recommended that practices to address bpsds build from broader dementia care principles, which include sim- plifying tasks (breaking each task into simple steps, using verbal and/or tactile prompts); communicating clearly and calmly and allowing sufficient time for the individual’s response; aligning activities with the individual’s preference and capacity and providing support as needed; and engag- ing with the individual in a simplified environment that is free from clutter and distractions, using visual cues for ori- entation (gitlin, kales, & lyketsos, ). family caregiv- ers and formal care providers of people living with dementia often need education/training about these principles, as well as how to recognize bpsds, their triggers, and strategies to alleviate them (spector, orrell, & goyder, ). to date, a number of systematic and literature reviews have identified evidence-based nonpharmacological prac- tices to address bpsds. consistent with the conceptual approaches described above, these reviews have highlighted the utility of identifying characteristics of the social and physical environment that trigger or exacerbate bpsds. however, not all reviews have focused specifically on out- comes related to bpsds (e.g., one systematic review exam- ined “health outcomes” that included bpsds; zimmerman et al., ) and others have been specific to settings of care (e.g., a cochrane review of dementia special care units; lai, yeung, mok, & chi, ). furthermore, few of the reviews present and summarize the conceptual underpinnings of the individual practices, which is important information for considering when, why, and for whom a practice may be effective. furthermore, there has been limited attention to the investment required for each practice, in terms of time requirements (such as for training and implementation), the need for specialized care providers, and equipment and capital resource requirements, all of which are important in the context of crafting recommendations for dementia care. therefore, the intent of this article is to serve as an applied review of the literature that summarizes evidence-based nonpharmacological practices to address bpsds, describes the practices in some detail, critiques them in terms of their investment requirements, and derives related recommenda- tions for dementia care. other reviews have not typically provided information to help potential users understand the conceptual basis underlying practices or the time investment necessary to implement them; consequently, this article is unique in its relevance for potential adopters. design and methods to identify evidence-based nonpharmacological practices to address bpsds, a search of systematic and other literature reviews published in english from january through january was conducted. the start date focused this review on the most up-to-date assessments of a body of literature that has been growing for several decades; the majority of reviews have been published since , but most cover evidence published since or earlier. search the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust terms included “systematic (or literature) review,” “demen- tia (or alzheimer’s disease),” “behavioral and psychological symptoms of dementia” (and synonyms), and “interventions” (and related terms). search databases included pubmed, cinahl, psycinfo, ageline, and cochrane. as needed, articles identified from the reference lists of the reviews were themselves reviewed for clarification or more information; additionally, so as to be inclusive, a small number of indi- vidual studies on bpsd practices that were identified during the search but not yet evaluated in systematic reviews were included in this review and synthesis. review articles that addressed the experiences and outcomes of caregivers them- selves were not included, although we recognize the essential link to the experiences and outcomes of the person living with dementia (gitlin, marx, stanley, & hodgson, ). as a literature review and synthesis, this article presents evi- dence that has already been evaluated using a priori inclu- sion criteria and standards of rigor rather than replicating existing systematic review efforts. it does not evaluate the qualities of the reviews themselves, but it is important to note that they all met the standards of peer review. the identified bpsd practices were summarized to describe the overall conceptual basis of each practice, the practice itself, and related evidence. then, the evidence base for each practice was critically reviewed by the authors to determine apparent/likely acceptability to participants, reported/poten- tial harmful effects, potential elements of effectiveness, and investment required. as the included reviews used different criteria to search and evaluate the strength of the evidence, the intention in this article was to broadly summarize the findings across the reviews for potential adopters rather than specifically quantify the number of level i, level ii, and level iii studies on each practice. thus, the size of the evi- dence base for each practice was heuristically characterized as small (when the systematic reviews that were summarized in this review tended to identify fewer than five studies meet- ing inclusion criteria and supporting the bpsd practice in question), moderate ( – studies), or large (more than studies); to note, these categories served as a general guide for summarizing the extent of the evidence rather than precise quantifications. the main conclusions from the evidence were characterized as positive (if positive effects were reported across the reviews), mixed (if negative effects were also iden- tified), or preliminary (if the evidence base was too small to evaluate). investment was rated as low, moderate, or high, in relation to time needed for training and implementation, spe- cialized care provider requirements, and equipment or capital requirements, based on an adaptation of an existing frame- work. as shown in table  , low investment requires <  hr of training and <  min to implement, no specialized care pro- vider requirements, and material purchases <$ with no environmental modification; high investment requires >  hr of training and >   min to implement, a specialized care provider, and material purchases >$ with ongoing cost >$ /month and extensive environmental modification; and moderate involvement lies between the two extremes for all categories (seitz et al., ). overall, the literature itself did not quantify the investment required of each practice, so the authors used their judgment based on these criteria. the results section presents the practices, conceptual basis, evidence, and implementation; tables – provide additional details regarding evidence. results from the database search, articles reporting evidence- based nonpharmacological practices to treat bpsds were reviewed, and single articles were also reviewed for their detail on particular practices. the practices that were identified have been classified here in three overarching cat- egories: sensory practices (aromatherapy, massage, multi- sensory stimulation, and bright light therapy), psychosocial practices (validation therapy, reminiscence therapy, music therapy, pet therapy, and meaningful activities), and struc- tured care protocols (bathing and mouth care). sensory practices normal aging is associated with gradual decline across the five senses—visual, auditory, kinesthetic, olfactory, and table  . criteria to rate investment required for nonpharmacological practices to treat bpsds low investment moderate investment high investment time required for training and implementation <  hr of training –  hr of training >  hr of training <  min to implement –  min to implement >  min to implement specialized care provider requirements none implemented by usual care provider but requires specialized knowledge not implemented by usual care provider equipment or capital resources material purchase <$ with no ongoing cost material purchase $ –$ ongoing cost <$ /month some environmental modification material purchase >$ ongoing cost >$ /month extensive environmental modification no environmental modification note: bpsds = behavioral and psychological symptoms of dementia. the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust gustatory—which can lead to loss of independence, social isolation, disorientation and confusion, safety risks, and other adverse outcomes (raina, wong, & massfeller, ; schneider et al., ). sensory change is also specifically associated with cognitive impairment, although the nature and degree of this association is still under investigation (behrman, chouliaras, & ebmeier, ). older persons liv- ing with dementia are therefore particularly vulnerable to sen- sory deficits, which can reduce their capacity to interpret and manage the demands of their environment (consistent with the progressively lowered stress threshold model described in the introduction). an individual who has trouble seeing, for example, may be easily startled and distressed by noises that are not clearly identifiable, leading to anxiety or agitation. sensory practices comprise a range of techniques for correcting sensory imbalances, increasing alertness, reduc- ing anxiety and agitation, and enhancing quality of life (fitzsimmons, barba, & stump, ; strøm, ytrehus, & grov, ). prominent among these tested techniques are aromatherapy, massage, multisensory stimulation (mss), and bright light therapy. it is recommended that sensory practices are supported by basic care practices that help minimize confusion and enhance orientation, such as ensuring that individuals have functional hearing aids and eyeglasses, and that the care environment is well-lit and easily navigable (behrman et  al., ); together, these practices can help individuals better tolerate the press from their environment. table  . sensory practices practice description summary of evidence assessment of implementation and investment aromatherapy administration of scented oils (e.g., lavender or lemon balm), via diffusion, patches, or skin cream, to induce calm and positive affect. moderate evidence base well accepted by participants evidence is mixed; indicates positive effect on agitation no known harmful effects autonomic nervous system regulation and social/physical contact may be key elements of effectiveness low investment (minimal time, usual caregiver, modest resources) more high-quality research required, using consistent implementation protocols and outcome measures massage tactile or therapeutic touch applied to back, shoulders, necks, hands, or feet by qualified massage therapist or by trained staff or family members, to induce calm and positive affect. small evidence base well accepted by participants evidence indicates positive effects on agitation, aggression, anxiety, depression, disruptive vocalizations more high-quality research required, using consistent implementation protocols and outcome measures and conducted with larger samples no known harmful effects, although individual preference regarding physical touch should be assessed and honored physiological response and social/ physical contact may be key elements of effectiveness low investment (minimal time, usual caregiver, modest resources) multisensory stimulation stimulation of multiple senses through a combination of light effects, calming sounds, smells, and/or tactile stimulation, to overcome apathy or induce calm. large evidence base well accepted by participants evidence indicates positive effects on agitation, anxiety, apathy, depression no known harmful effects social contact may be key element of effectiveness moderate investment (moderate time, usual caregiver, moderate resources) more high-quality research required, using consistent implementation protocols and outcome measures and conducted with larger samples bright light therapy exposure to simulated or natural lighting designed to help promote synchronization of circadian rhythms with environmental light–dark cycles. moderate evidence base degree of acceptance varies by light source some potential for harmful effects evidence is mixed, showing both positive and negative effects more high-quality research required, especially with natural lighting change to circadian rhythm may be key element of effectiveness moderate investment (moderate time, usual caregiver, low or moderate resources) the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust table  . psychosocial practices practice description evidence assessment of implementation and investment validation therapy individual or group practice designed to validate the perceived reality and emotional experience of the individual. small evidence base well accepted by participants evidence is mixed; some evidence of positive effects on agitation, apathy, irritability, night-time disturbance no known harmful effects, although care providers should ensure that negative emotions are not exacerbated through validation more high-quality research required on the specific effects on bpsds alleviating negative feelings and enhancing positive feelings may be key elements of effectiveness low investment (minimal time, usual caregiver, modest resources) reminiscence therapy individual or group practice designed to induce positive affect through a focus on happy memories, often using photographs or other prompts. moderate evidence base well accepted by participants evidence indicates positive effects on mood, depressive symptoms more high-quality research required on the specific effects on bpsds no known harmful effects, although care providers should help focus reminiscence on positive memories increasing well-being and providing pleasure and cognitive stimulation may be key elements of effectiveness moderate investment (moderate time, usual or special caregiver, modest resources) music therapy receptive or participatory activities designed to promote well-being, foster sociability, create familiarity, and reduce anxiety. moderate evidence base evidence indicates positive effects on a range of bpsds, including anxiety, agitation, and apathy, particularly with personalized music practices degree of acceptance varies by participant’s preference for music no known harmful effects promoting well-being and sociability, aiding reminiscence, reducing anxiety/stress, and providing distraction may be key elements of effectiveness moderate investment (moderate time, usual or special caregiver, modest resources) more high-quality research with larger samples required pet therapy structured or unstructured time with animals, primarily dogs, to promote well-being, socialization and emotional support, and sensory stimulation. small evidence base evidence is preliminary, with some evidence of positive effects on agitation, apathy, disruptive behavior degree of acceptance varies by participant’s preference for contact with animals negative outcomes may include allergic reactions, hygiene concerns, or anxiety/agitation socialization/bonding, emotional support, and sensory stimulation may be key elements of effectiveness low to moderate investment (minimal to moderate time, usual or special caregiver, modest to moderate resources) stuffed or robotic pets may be an effective substitute for live animals more high-quality research with larger samples and consistent implementation protocols required meaningful activities provision of activities designed to enhance quality of life through engagement, social interaction, and opportunities for self-expression and self-determination. moderate evidence base evidence is mixed, but shows some positive effects on agitation; larger effect sizes for activities that are individually tailored degree of acceptance varies by appropriateness of activity no known harmful effects, except for expected risks associated with physical engagement in activities enhancing quality of life, social interaction, and opportunities for self-expression and self- determination may be key elements of effectiveness low to moderate investment (moderate time, usual or special caregiver, modest resources) some evidence for positive effect of physical exercise activities on agitation and depressive symptoms more high-quality research with larger samples and longer duration required note: bpsds = behavioral and psychological symptoms of dementia. the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust aromatherapy aromatherapy is based on the long-standing practice of using scented oils, such as lavender or melissa oil (lemon balm), to “regulate body activities by control and acti- vation of the autonomic nervous system and the neuro- endocrine system” (press-sandler, freud, volkov, peleg, & press, ). given the link between smell and memory, the scent of essential oils (aromatic compounds found in seeds, bark, stems, roots, flowers, and other plant parts) can potentially improve an individual's mood if linked to positive memories; even as olfaction decreases, how- ever, essential oils may have a direct effect on the brain (behrman et al., ). a number of studies have tested the efficacy of aroma- therapy for agitation and aggression in dementia. in these studies, the practice has been administered using room diffusion, sachets, a patch, or skin cream; and dosage has ranged from   min to   hr for a period of –   days (strøm et  al., ). recent reviews of the moderate evi- dence base for aromatherapy in dementia have found mixed results (forrester et  al., ; livingston et  al., ; press-sandler et  al., ; strøm et  al., ). for example, one descriptive analysis of randomized controlled trials concluded that applying oil closer to the olfactory system was associated with positive outcomes, whereas the type of oil or duration of treatment made no explanatory difference (press-sandler et al., ). a different review of practices for agitation in nursing homes (livingston et al., ) found that aromatherapy has not been effective when assessors are masked to the treatment. despite the need for more large-scale efficacy trials, cur- rent evidence indicates that aromatherapy is well accepted by participants with no harmful effects. social and physical contact may be a key therapeutic element in aromatherapy practices, such as when scents are provided through the application of a hand cream (ballard, o’brien, reichelt, & perry, ). our review of aromatherapy suggests that required investment is low, given minimal time needed for learning and implementation, no need for a specialized care provider, and modest resource requirements. massage as a nonverbal means of communication or connection, massage may help offset the social isolation that triggers negative affect and related behaviors (behrman et al., ). through tactile connection, a person living with dementia may feel comforted and cared about, especially in residen- tial care environments where touch tends to be instrumen- tal and task specific (gleeson & timmins, ); by the same token, massage may help familiarize the person with his/her care provider and thereby reduce resistance to per- sonal care (fitzsimmons et al., ). touch may also incur a physiological response, for example a sense of reassur- ance or calm mediated by the production of oxytocin, and meaningful sensory stimulation may help counteract cogni- tive decline (hansen, jorgensen, & ortenblad, ). massage may be applied to different parts of the body, including back, shoulders, neck, hands, or lower legs and feet, using slow or large strokes, rubbing or kneading, non- contact therapeutic touch, or acupressure (hansen et  al., ). a small evidence base shows positive results for the effectiveness of massage in helping reduce agitation, aggres- sion, stress, anxiety, depression, and disruptive vocaliza- tions in the immediate or short term (kales et  al., ; moyle, murfield, o’dwyer, & van wyk, ; randall & clissett, ; staedtler & nunez, ; strøm et  al., ; hansen, jorgensen, & ortenblad, ). massage appears to be well accepted by participants; it is recommended that individual preference be assessed, however, as the increased stimulation may increase agita- tion (o’neil et al., ). our review suggests that min- imal investment is required to implement massage practices (minimal time demands, no need for a specialized care pro- vider, and few capital resources). however, the diversity of massage techniques and outcomes suggests that develop- ment of specific protocols would be beneficial to enhance table  . structured care protocols practice description evidence assessment of implementation and investment mouth care structured protocols for providing mouth care that include person-centered communication and interaction strategies as well as technical skills. small evidence base well accepted by participants evidence is preliminary; one study found positive effects on care-resistant behaviors no known harmful effects reducing threat, anxiety, fear, and pain may be key elements of effectiveness low investment (low time, usual caregiver, modest resources) more high-quality research required bathing structured protocols for providing bathing care that include person-centered communication and interaction strategies as well as technical skills. small evidence base well accepted by participants no known harmful effects reducing fear and pain may be key ele- ments of effectiveness low investment (low time, usual caregiver, modest resources) evidence indicates positive effects on agitation, aggression, irritability, anxiety more high-quality research required, using consistent implementation protocols and outcome measures the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust the consistent application and effectiveness of touch-based practices (moyle et al., ). web-based training modules may be especially beneficial in this regard (tuohy, graham, johnson, tuohy, & burke, ). multisensory stimulation originating in the learning disabilities field (burns, cox, & plant, ), mss is designed to provide “a stress-free, entertaining environment both to stimulate and to relax” (sánchez, millán-calenti, lorenzo-lópez, & maseda, , p.  ), which does not require cognitive processing or short-term memory (behrman et  al., ). because mss environments are designed to be explored by the individ- ual in his/her own way, mss is also intended to promote control and autonomy, which may otherwise be denied to persons living with dementia. mss involves the stimulation of multiple senses through a combination of light effects, calming sounds, smells, and/or tactile stimulation (sánchez et  al., ). practices have ranged from three sessions (in total) to daily ses- sions over  months, averaging  min/session. a leading example of mss is snoezelen, a model that includes music, aroma, bubbles, fiberoptic sprays, and projected images (o’connor, ames, gardner, & king, ). other mss approaches include sensory gardens (goto, kamal, puzio, kobylarz, & herrup, ) and the incorporation of sen- sory stimulation into daily care routines (van weert, van dulmen, spreeuwenberg, ribbe, & bensing, ; whall et al., ). from the large but diverse body of research on mss practices, there is positive evidence for the effects of mss on reducing short-term anxiety, agitation, and apathy (baker et  al., ; millán-calenti et  al., ; sánchez et al., ). as with aromatherapy and massage, evidence also suggests that part of the therapeutic benefit of indi- vidualized mss practices may be the dyadic interaction involved (maseda et al., ). mss appears to be well accepted, with no negative effects. different from the other sensory practices, however, our review suggests that moderate investment in resources and time is required. once resources are secured, care pro- vider time is the primary ongoing cost. as with massage, there is a need for more clearly defined protocols and care provider training to implement mss (bauer, rayner, koch, & chenco, ). bright light therapy normal aging is associated with changes in the circadian sleep-rest cycle that may result in fragmented nocturnal sleep, including multiple and prolonged awakenings, and increased daytime sleep (forbes, blake, thiessen, peacock, & hawranik, ). in persons living with dementia, these sleep disturbances tend to be exacerbated by degenerative changes in the suprachiasmatic nuclei (scn) of the hypo- thalamus, which generates the circadian rhythm, and can result in bpsds such as agitation and sundowning. bright light therapy is designed to promote the synchronization of circadian rhythms with environmental light-dark cycles through stimulation of the scn (behrman et  al., ). this practice may be particularly important for nursing home residents, who otherwise receive limited exposure to bright light (sloane et al., ). light therapy can be delivered through a light box, a light visor, ceiling-mounted light fixtures, “naturalistic” lighting that simulates twilight transitions (forbes et  al., ), or exposure to natural bright light (dowling et al., ). practices have ranged from , to , lux exposure for –  hr for  days to  months (brasure et al., ). the evidence base for bright light therapy is moder- ate but shows mixed results. one recent review found insuf- ficient evidence to recommend light therapy for reducing sleep disturbance or other bpsds, such as agitation (forbes et  al., ); another review found low-strength evidence showing that bright light therapy is similar to standard light in managing agitation and aggression (brasure et al., ). other reviews have found no efficacy for light ther- apy and that it may actually worsen agitation (livingston et  al., ), although others have found positive effects on agitation and sleep (cabrera et  al., ), and mixed results for depression (hanford & figueiro, ). overall, the evidence suggests that bright light therapy may have some therapeutic benefit for reducing agitation, depression, and/or sleep disturbance in some individuals living with dementia, although further research is required. monitoring is critically important to ensure that bright light does not increase agitation. our review suggests that bright light therapy requires moderate investment (as it can be administered by the usual care provider with add- itional time and with low to moderate capital investment). acceptability may be increased and investment require- ments decreased by using natural light (opening windows, going outdoors) or ambient light rather than individual light boxes, which are more expensive and less usable with mobile individuals (hickman et al., ). psychosocial practices as described in the introduction, a number of conceptual models explain the emergence of bpsds as an interaction between an individual’s neurological changes and their surrounding environment. individuals living with demen- tia may experience anxiety, for example, because memory problems render their surroundings unrecognizable, espe- cially in residential care settings where daily interactions are not supported by long-term memories. psychosocial practices are specific strategies intended to create a person- centered environment (see fazio, pace, flinner, & kallmyer, ) to help prevent or alleviate bpsds and improve overall quality of life (testad et al., ; vernooij-dassen, vasse, zuidema, cohen-mansfield, & moyle, ); in this context, they are consistent with the person-centered focus of the needs-driven dementia-compromised behavior model. prominent practices of this type include validation the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust therapy, reminiscence therapy, music therapy, pet therapy, and meaningful activities. validation therapy rooted in rogerian humanistic psychology (livingston, johnston, katona, paton, & lyketsos, ), validation therapy focuses on accepting the reality of the person living with dementia. by focusing empathically on the emotional content of a person’s words or expressions, the aim of val- idation therapy is to alleviate negative feelings and enhance positive feelings. validation therapy is implemented through a number of communication techniques, including using nonthreatening words to establish understanding; rephrasing the person’s words; maintaining eye contact and a gentle tone of voice; responding in general terms when meanings are unclear; and using touch if appropriate (mitchell & agnelli, ). the evidence base for validation therapy is small and shows mixed findings. a recent review of personalized psy- chosocial practices for bpsds (testad et al., ) identi- fied two validation therapy studies: one study of validation therapy and sensorial reminiscence therapy conducted twice weekly for weeks, with each session lasting – min, found significant improvements for behavioral dis- turbance compared to controls (deponte & missan, ); the other study, which included both individual ( min, three times per week) and group sessions ( – min weekly), found decreased agitation, apathy, irritability, and night-time disturbance (tondi, ribani, bottazzi, viscomi, & vulcano, ). however, several other reviews found insufficient evidence for the efficacy of validation therapy in reducing bpsds (livingston et al., ; o’connor et al., ; o’neil et al., ). although the evidence base for validation therapy is underdeveloped, the concept of honoring the feelings of the person living with dementia has face validity as part of person-centered dementia care (kitwood, ). validation therapy is a low investment practice, as it can be integrated into care by usual care providers after modest investment in communication training. negative effects appear minimal, although there may be risk that an individual’s feelings of distress could be exacerbated through validation therapy if care providers are not sufficiently prepared to both honor and alleviate those feelings. reminiscence therapy reminiscence therapy involves discussion of past events and experiences with the aim of increasing well-being and providing pleasure and cognitive stimulation (cabrera et al., ). it relates to erikson’s theory of psychosocial development, in which the final “wisdom” stage (posited as age  years and older) is characterized by retrospection, or looking back over one’s life (kasl-godley & gatz, ). the approach is also based on the concept that older mem- ories are more enduring than recent memories (cammisuli, danti, bosinelli, & cipriani, ). introduced in the s, reminiscence therapy has been considered by some to be “one of the most popular psychosocial interventions in dementia care” (cotelli, manenti, & zanetti, ). reminiscence therapy can be conducted with an indi- vidual or in a group, guided by either free recall (through conversation), specific stimuli (e.g., photographs, music), or a life-review method (often by creating a life-history book). reminiscence therapy has been tested in - to -min sessions, one to two times per week for – weeks (testad et al., ). there is a moderate base of evidence supporting its positive effects on mood, depression, and agitation or distress in the short term; however, the evi- dence is limited by sample size and heterogeneity, lack of blinded post-treatment assessment, and lack of information about adherence (cabrera et  al., ; cammisuli et  al., ; cotelli et al., ; huang et al., ; testad et al., ). one review found strongest evidence for the benefit of reminiscence therapy in improving mood and depressive symptoms, with four studies reporting significant benefits compared to control (testad et al., ). as with validation therapy, reminiscence therapy fits well within a broader, person-centered approach that aims to recognize and honor the individual (mitchell & agnelli, ). in residential care settings, learning about each per- son’s personal history and meaningful events is considered important for combatting isolation and loneliness (huang et al., ). validation therapy requires moderate invest- ment in training and implementation time; an optional expenditure is the cost of audio-visual aids, such as film projectors or music players (lazar, thompson, & demiris, ). there is no evidence of adverse effects of reminis- cence therapy (woods, spector, jones, orrell, & davies, ), although the onus is on care providers to guide rem- iniscence toward positive memories, rather than negative memories that may cause distress. music therapy music may help prevent or alleviate distressing symptoms of dementia in a number of ways. as a leisure activity, music is thought to promote well-being and fosters sociability in part by offsetting the isolation that can result from progressive loss of verbal ability (cammisuli et al., ). furthermore, because musical memory is generally retained longer than other memories, music can facilitate reminiscence and potentially reduce anxiety through general mind activation and specific memory triggers (spiro, ). consistent with the progressively lowered stress threshold model, music may reduce stress by creating a sense of familiarity and regularity in the environment (behrman et al., ). broadly, musical activities can be classified as either receptive (listening to music) or participatory (mak- ing music; mitchell & agnelli, ). practices include personalized music delivered through ipods or as part of daily care, or group sessions using prerecorded music or delivered by staff or music therapists (chang et  al., ). they have generally been implemented for up to the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust   hr, two to three times per week, for an average of weeks (ueda, suzukamo, sato, & izumi, ). a number of reviews have found a moderate evidence base support- ing the positive effects of music therapy on the short-term reduction of a range of bpsds, including anxiety, agitation, and apathy (cammisuli et  al., ; chang et  al., ; gómez-romero et  al., ; kales et  al., ; konno, kang, & makimoto, ; livingston et al., ; millán- calenti et al., ; strøm et al., ; ueda et al., ). a  recent meta-analysis concluded that individual music therapy provided once a week and group music therapy provided several times a week are optimal for reducing dis- ruptive behaviors, anxiety, and depressive mood (chang et  al., ). another review of music therapy for agita- tion found evidence for individualized music practices and interactive modalities (e.g., clapping, singing, and dancing; millán-calenti et  al., ). a  number of other studies have supported the efficacy of personalized or preferred music (doody et  al., ; garland, beer, eppingstall, & o’connor, ; sung, chang, & lee, ). music therapy appears to be an enjoyable and effect- ive approach to alleviate bpsds and create well-being. our review suggests that investment is moderate, as time and training are required to set up and sustain a music pro- gram; more resources are required over the long term for group sessions led by a music therapist than for individ- ualized recorded music sessions. music therapy does not appear to have adverse effects although, and as with other bpsd practices, a personalized approach is recommended so that the practice aligns with the individual’s preference. pet therapy pet therapy, also known as animal-assisted therapy, has been used for several decades to treat mental and physical health disorders, including in dementia, intending to pro- mote socialization and emotional support, sensory stimu- lation, and enhanced well-being (bernabei et  al., ). physiologically, quiet interaction with an animal can help lower blood pressure and increase production of neuro- chemicals associated with relaxation and bonding, which may in turn reduce bpsds (filan & llewellyn-jones, ). pet therapy in dementia, most often involving dogs, has been tested daily or one to two times per week for –   min for – weeks, in a structured or unstruc- tured format (bernabei et al., ). in small studies, it has reduced agitation and disruptive behavior, increased social and verbal interactions, and decreased passivity (bernabei et  al., ; brodaty & burns, ; filan & llewellyn- jones, ; strøm et al., ). preliminary studies using a robotic dog or cat—which may be more feasible to imple- ment by reducing maintenance costs, but does require initial capital investment—have shown positive increases in mood and decreased agitation (bernabei et  al., ; petersen, houston, qin, tague, & studley, ). overall, there is a small and preliminary evidence base for pet therapy, with most studies using quasi-experimental or repeated measure within-participant designs (livingston et al., ; o’neil et al., ). although the evidence is too preliminary is too prelim- inary to permit specific recommendations, our review sug- gests that pet therapy is a practice that requires minimal to moderate investment, depending on the initial or ongoing costs of acquiring and/or caring for the animal. specialized training and resource allocation may be required to care for and handle the animal or to contract with an outside agency, unless stuffed or robotic pets are used in place of live animals. negative outcomes may include allergic reac- tions, hygiene concerns, or anxiety/agitation among some individuals, such as those who had negative experiences with animals in the past. meaningful activities the provision of individualized, meaningful activities is considered an important element of person-centered care and may help prevent or alleviate bpsds by enhanc- ing overall quality of life through engagement, enhanced social interaction, and opportunities for self-expression and self-determination (han, radel, mcdowd, & sabata, ). by contrast, lack of meaningful activity is cited by persons living with dementia and family members as one of the most “persistent and critical” unmet needs (trahan, kuo, carlson, & gitlin, ). the importance of tailor- ing activities is noted as particularly important for ensuring that individuals are able to fully participate and benefit, regardless of their cognitive capacity or functional abilities (trahan et al., ). these practices comprise a range of leisure and social activities, also known as recreational activities, usually tailored to the individual’s preferences, cognitive and func- tional abilities, lifelong habits and roles, and memories and past experiences (han et  al., ). overall, the evidence base for individualized activities is moderate, with mixed findings. a  recent review found that nonindividualized meaningful activities reduced mean agitation levels in the short run, with mixed findings about the additional bene- fit of individualizing activities according to functional level and interest; there was a lack of evidence about longer- term effect (livingston et  al., ). other reviews have found more support for individually tailored activities (brodaty & burns, ; de oliveira et  al., ); how- ever, evidence is still insufficient to draw conclusions about the comparative effectiveness of practices tailored to dif- ferent characteristics (brasure et  al., ). as a specific type of activity, there is some evidence for the effectiveness of exercise programs (including endurance, strength train- ing, and/or general physical activation; fleiner, leucht, förstl, zijlstra, & haussermann, ) on agitation and depressive symptoms for individuals living with dementia, although effect sizes are small and the evidence is limited by heterogeneous designs, small samples, and short practices (barreto, demougeot, pillard, lapeyre-mestre, & rolland, ; brett, traynor, & stapley, ; forbes, forbes, the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust blake, thiessen, & forbes, ; potter, ellard, rees, & thorogood, ). like other nonpharmacological practices for bpsds, the provision of meaningful activities is consistent with the broader aims of person-centered care. investment required for implementation varies depending on the type of activ- ity, but in most cases will be low to moderate; meaningful activities take time, but can often be facilitated by regu- lar care providers or informal caregivers without extensive additional training. structured care protocols personal care routines can trigger a range of negative feel- ings and experiences for individuals, including pain or dis- comfort, fear, and embarrassment (o’connor et al., ); the needs-driven dementia-compromised behavioral model suggests that bpsds represent meaningful expressions of these feelings and experiences. good mouth care, for example, is important for maintaining or improving qual- ity of life and reducing risk of morbidity and mortality; however, practices such as tooth brushing are often resisted by persons living with dementia due to pain and/or the intimate and potentially intrusive nature of the practice (zimmerman, sloane, cohen, & barrick, ). similarly, bathing can create embarrassment or anxiety as well as discomfort, including due to arthritic pain experienced during movement (dunn, thiru-chelvam, & beck, ). structured care protocols, adapted to an individual’s needs and preferences, may help family caregivers and care pro- viders implement care in a person-centered and technically proficient way that avoids or minimizes pain and other behavioral triggers. of course, in all instances, pain itself should be assessed—such as through facial cues, body move- ments, and/or vocalizations—and appropriately addressed, including with medication if indicated (achterberg et  al., ; husebo, ballard, & aarsland, ; kovach et  al., ; pieper et al., ). mouth care anticipated resistance to daily mouth care (e.g., tooth brushing or mouth swabbing) is one of the reasons that oral hygiene tends to be neglected for people living with demen- tia, especially in residential care settings (zimmerman et al., ). anxiety or agitation during mouth care may be the manifestation of a limbic threat identification and fear response, a response that is progressively less medi- ated by cortical control in cognitive impairment (jablonski, therrien, & kolanowski, ). using mouth care proto- cols that include person-centered strategies for approach- ing, communicating with, and touching the individual, along with technical skills, may help reduce threat and thereby minimize resistive behaviors. this review found that the evidence base for the effect of mouth care protocols on global or individual bpsds is small and preliminary. one review (konno et  al., ) found evidence from one pilot study that mouth care using an ability-focused, threat-reduction approach administered over a -week period significantly improved care-resistant behaviors (jablonski et  al., ). findings from another evidence-based practice, ‘mouth care without a battle’, suggest that care providers who have been trained to use a mouth care protocol feel more able to effectively address behavioral responses during care (zimmerman et al., ). from the limited evidence, our assessment is that little investment is required to implement structured protocols to prevent or minimize bpsds during mouth care. minimal capital expenditures include appropriate toothbrushes and other mouth-care supplies. however, training is required to ensure that family caregivers and other care providers are well prepared to implement the protocol appropriately, effectively, and consistently. no harmful effects have been identified. bathing an intimate activity inscribed by cultural norms and indi- vidual preferences, bathing is the personal care task associ- ated with the highest frequency of behavioral expressions of distress for persons living with dementia (gozalo, prakash, qato, sloane, & mor, ). as with mouth care, distress during bathing may signify a fear response that may poten- tially be alleviated by implementing person-centered strate- gies and skills. a range of bathing protocols have been tested for a duration of – weeks, with a primary focus on providing person-centered showers or bed baths (depending on the individual’s preference) and enhancing the bathing environ- ment through preferred music or calming sounds. results from this small evidence base suggests that bathing pro- tocols show positive results in reducing agitation, aggres- sion, irritability, and anxiety as well as physical discomfort (konno et  al., ; o’connor et  al., ; pieper et  al., ), but more high-quality studies are required (kales et al., ). our review suggests that implementing structured pro- tocols for bathing requires minimal investment, given that they can be incorporated into ongoing care by usual staff, with some training and support. no harmful effects have been identified. discussion a large body of research indicates that a range of sensory practices, psychosocial practices, and structured care pro- tocols can be effective to some extent in addressing bpsds, thus aligning with the causal mechanisms described in the competence-environmental press framework, the progres- sively lowered stress threshold model, and the needs-driven dementia-compromised model. although the evidence base for virtually every practice requires further development, it was possible to identify a conceptual justification for the the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust potential effectiveness of each one (e.g., meaningful activi- ties conceptualized as addressing a critical unmet need for social engagement expressed through anxiety or apathy). furthermore, all can be implemented with minimal to moderate investment of time and resources, and depend- ing on the investment required, most of the practices can be implemented by family caregivers in home-based set- tings as well as by paid care providers in other settings, suggesting a good likelihood of “management continu- ity” (haggerty et  al., ) across care settings. broadly speaking, enhanced continuity of care is associated with reduced health care use, cost, and complications (hussey et  al., ). in dementia specifically, continuity of care may also help promote the “continuation of self and nor- mality” that has been articulated by individuals and their families as the core of person-centered care (edvardsson, fetherstonhaugh, & nay, ). two caveats are noted regarding use of evidence-based practices to address bpsds. first, conceptual models of bpsds indicate that practices should reflect environmental press as experienced by the individual, his/her experience of stress and coping reaction(s), and his/her specific unmet need(s). considered this way, practices should be respon- sive to the perspective of the person living with dementia, support his/her sense of self, promote individualization and relationship building, and structure an environment that promotes well-being (fazio et al., ). in sum, nonphar- macological practices to treat bpsds are recommended to be person-centered. for example, the potential for validation or reminiscence therapy to evoke distressing memories for a particular individual requires careful consideration, and pet therapy may only be acceptable to individuals who are comfortable around animals. however, little literature has specifically examined outcomes in relation to the extent to which practices have been individually chosen and tailored, which seems an area important for future study; in fact, it may be the lack of individualization that in some cases is responsible for inconclusive evidence. for this reason, it is important that systems be put in place to evaluate the effectiveness of practices and allow for change as needed. the process of selecting and monitoring practices to evalu- ate their individual effectiveness is usefully captured by the describe, investigate, create, evaluate (dice) cycle for the person-centered management of bpsds (kales, gitlin, & lyketsos, ). second, many practices for bpsds lack readily access- ible evidence-based protocols for administration. the absence of such protocols means that family caregivers and other care providers do not have sufficient guidance to implement practices that are likely to be efficacious as part of their caregiving efforts. given that many of the manuscripts reviewed for this article were derived from research that used standardized protocols, creating a tool- kit of evidence-based practices for bpsds seems an easy next step to improve the quality of life of people living with dementia. once such protocols are available, care providers are advised to adhere to the protocols of administration to ensure that practices are used. that said, the protocols themselves may need to evolve over time, given the pro- gressive nature of dementia and the individualized nature of bpsds. an additional consideration relates to the investment required to enact the practices. the typology used in this article (seitz et  al., ) provides general categories of time investment (combining time for training and imple- mentation) and equipment or capital costs (combining initial and ongoing costs). it is conceivable, however, that more finite figures or a different classification would bet- ter describe “investment” for a given user. for example, a practice that requires >  hr of training is considered to be a high investment, but if it may be implemented in <  min, a user might then rate it as a moderate, or perhaps low, investment. indeed, the developers suggest that if a prac- tice does not meet all criteria within a category, it may best be assigned to the next lowest category. therefore, consid- eration and ratings of investment are best individualized, which is consistent with the overall person-centered focus of care provision. based on this synthesis of findings from previous sys- tematic reviews, and a critical consideration of implementa- tion and investment required to implement evidence-based practices to address bpsds, the following five practice rec- ommendations are suggested: . identify characteristics of the social and physical envir- onment that trigger or exacerbate behavioral and psy- chological symptoms for the person living with demen- tia. bpsds result from changes in the brain in relation to characteristics of the social and physical environment; this interplay elicits a response that conveys a reaction, stress, or an unmet need and affects the quality of life of the person living with dementia. the environmental triggers of bpsds and responses to them differ for each person, meaning that assessment must be individualized and person-centered. . implement nonpharmacological practices that are person centered, evidence based, and feasible in the care setting. antipsychotic and other psychotropic medications are generally not indicated to alleviate bpsds, and so non- pharmacological practices should be the first-line ap- proach. practices that have been developed in residential settings and which may also have applicability in com- munity settings include sensory practices, psychosocial practices, and structured care protocols. . recognize that the investment required to implement nonpharmacological practices differs across care settings. different practices require a different amount of invest- ment in terms of training and implementation, special- the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust ized caregiver requirements, and equipment and capital resources. depending on the investment required, some practices developed in residential settings may be feasible for implementation by caregivers in home-based settings. . adhere to protocols of administration to ensure that practices are used when and as needed, and sustained in ongoing care. protocols of administration assure that there is a “guide- line” for care providers as they strive to alleviate bpsds. these protocols may evolve over time, responsive to the particular components of the practice that are most ef- fective for the person living with dementia. . develop systems for evaluating the effectiveness of prac- tices and make changes as needed. the capacity and needs of persons living with dementia evolve over time, and so practices to alleviate bpsds also may need to evolve over time. therefore, it is necessary to routinely assess the effectiveness of the practice and, if neces- sary, adapt it or implement other evidence-based practices. funding this work was supported by a grant from the national institute on aging (grant r ag ). dr. scales’s effort was addition- ally supported by a national institutes of health t postdoctoral fellowship through the duke university center for the study of aging and human development ( t ag - ). this article was published as part of a supplement sponsored and funded by national office of the alzheimer’s association. conflict of interest none reported. references achterberg, w. p., pieper, m. j., van dalen-kok, a. h., de waal, m. w., husebo, b. s., lautenbacher, s., & corbett, a. 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( ). systematic review: effective characteristics of nursing homes and other residential long-term care settings for people with dementia. journal of the american geriatrics society, , – . doi: . /jgs. zimmerman, s., sloane, p. d., cohen, l. w., & barrick, a. l. ( ). changing the culture of mouth care: mouth care without a bat- tle. the gerontologist, (suppl.  ), s –s . doi: . / geront/gnt the gerontologist, , vol. , no. s s d ow nloaded from https://academ ic.oup.com /gerontologist/article-abstract/ /suppl_ /s / by b ernetta e vans user on a ugust doi: . /j.bbmt. . . poster session ii the purpose of this poster is to describe how unc hospitals’ be- gan its patient and family support program and how this program has impacted patient outcomes and patient satisfaction. stem cell transplantation patient family caregivers: a pro- gram focused on ‘‘caring for the caregiver’’ adornetto-garcia, d.l., williams, l.a., jackson, a., norman, l., lederleitner, c., mir, m. md anderson cancer center, houston, tx. one of the most important aspects of stem cell transplantation (sct) is identifying a family caregiver to care for the patient during the transplant journey. at one of the largest transplant centers in the county, the focus is to develop a comprehensive sct caregiver program. the program is based on current caregiver literature and on the qualitative research of dr. loretta wiliams. the pro- gram is based on six themes identified in dr. williams’s research and includes commitment, expectation management, role negotia- tion, self care, new insight and role support. there are three components of the sct caregiver program. the first component is the development of a comprehensive caregiver manual. the manual will contain both education and resource in- formation focused specifically towards the family caregiver. the second component is to provide caregivers with expressive art ma- terials such as journals, photo albums and scrap books. researchers have suggested that psychological symptoms rather than physical symptoms are the most overwhelming to most caregivers and that – % suffer from these symptoms. the use of creative activities may promote feelings of well being, provide comfort, and lower anxiety. the third component is to conduct quarterly caregiver appreciation weeks. during one week of each quarter, caregivers are offered opportunities to participate in a variety of activities. the activities include massage, journaling, scrap booking and bingo. providing this recognition is our way to acknowledge the caregiver as an important person in the sct journey. in summary clinicians can provide support to family caregivers by providing them with education and expressive arts, and by acknowl- edging their unique contributions to the sct patients. the devel- opment of the sct caregiver program will provide the framework to meet the needs of the family caregiver throughout their sct journey. nursing care of the bone marrow transplant patient in sep- tic shock with acute respiratory distress syndrome mulholland, k. froedtert hospital, milwaukee, wi. purpose: provide a case study of a complex bone marrow trans- plant (bmt) patient in septic shock with acute respiratory distress syndrome (ards). to educate nurses about the pathophysiology of and nursing interventions for a patient in septic shock with ards. rationale: due to the immunocompromised nature of the bmt patient, sepsis and ards are more frequently seen in this population. the effects can be devastating and often result in multi-system organ failure and death. nurses can play a key role in patient outcomes by recognizing the signs and symptoms of sep- tic shock and ards. it is necessary for nurses to understand the cur- rent treatments and interventions to provide high quality patient care. history: the case study is based on a thirty-eight year old male diagnosed with hodgkin’s lymphoma who underwent autog- olous and allogenic bone marrow transplants. he was admitted to the bmt unit with worsening renal insufficiency. the night before he was scheduled to have a mahukar placed, he aspirated some water with his nighttime medications. throughout the night his oxygen requirements increased. while having the mahukar placed, his ox- ygen level dropped and he was intubated. interventions: the pa- tient required critical care interventions, including multiple vasopressors, frequent ventilator changes, and continuous renal re- placement therapy (crrt). he was medically paralyzed and re- quired advanced cardiac life support. implications: bmt nurses need a current knowledge base in the care of the septic and ards patient. nurses should be aware of the risk factors for sepsis and ards and be able to recognize the signs and symptoms of both conditions. it is important for nurses to be knowledgeable of the current treatment and interventions for septic shock and ards in order to take quick action in these emergency situations. successful integration of complementary therapies in a combined adult and pediatric bone marrow transplant unit mueller, k., farmer, a., talbert, g., shea, t. university of north carolina hospitals, chapel hill, nc. the university of north carolina hospitals’ bone marrow and stem cell transplant program was established in . since that time, hundreds of transplants have been performed. many changes have occurred: new regimens, new chemotherapies and other medications, and the addition of biotherapies. unfortunately, the side effects of pain and discomfort during treatment still exist. pain medications have been part of the transplant process since the beginning. morphine, hydromorphone, fentanyl, and others have helped smooth the rough road of transplant. antiemetics have been used to reduce the side effects of nausea and vomiting. recently, complementary therapies have further paved the way to a more easily tolerated transplant experience. at unc hospitals, the bone marrow and stem cell transplant program has incorporated massage therapy, relaxation and medita- tion exercises, pet therapy, aromatherapy, healing touch, singing bowls, and prayer labyrinths into its practice for those patients in- terested in combining complementary therapies with medication to decrease the intensity of pain with treatment. patients may have massages in their rooms. they may use a prayer labyrinth to become grounded and connect with their spiritual selves. they also have the opportunity to use singing bowls to focus energy. our recreational therapists guide patients into meditation exercises using guided imagery, biofeedback, diaphragmatic breathing, and relaxation tapes to calm fears and relieve discomfort. the purpose of this poster is to describe the complementary ther- apies utilized by unc’s bone marrow and stem cell transplant program and the ways in which patients undergoing transplants have benefited from these therapies. preventing falls for hematopoietic stem cell patients wood, j.m., schuldt, t.l., eilers, j. nebraska medical center, omaha, ne. in accordance with joint commission’s national patient safety fall prevention goal, we have focused on decreasing falls in our he- matopoietic stem cell (hsct) patients. the medications and side effects that accompany hsct place this population at high risk for falls. sustained low platelet counts following transplant place the patients at greater risk for life threatening injuries in the event of a fall. in attempt to decrease our fall rate, we reviewed incident reports and conducted post fall patient interviews. we identified the high risk group to be the alert and oriented patients in their ’s and ’s, most involving toileting issues. interviews determined the most frequent reasons for not calling for assistance were not ac- knowledging increased weakness and a desire to maintain personal dignity and independence with toileting. we initiated an extensive education program to help patients gain an understanding of their fall risk and the potential seriousness of related injuries. patient/fam- ily education begins pre-transplant, is followed up on by the poster session ii admitting nurse and reinforced throughout hsct. posters in each room reinforce the importance of calling for help to avoid falling. we involve family caregivers in monitoring patients’ status. institu- tional guidelines require nursing staff to assess patients’ fall risk at least every twelve hours using the schmid risk assessment tool. precautionary measures are implemented if the patient is determined to be at risk. we inform patients about the possible side effects and the potential need for help when toileting in an attempt to maintain their dignity while at the same time keeping them free from harm. we have teamed with the physicians to modify our c-difficile proto- col, decreasing the patients’ risk of dehydration, fatigue, and frequent toileting. in addition, we have partnered with our pharmacists to identify medications that place our patients at risk for falling and to ensure chemotherapy and diuretics are initiated at times that will be least likely to interfere with the patients’ rest patterns. this combination of team members working together has enabled us to decrease our fall rate from june to june and maintain the dignity and independence of our hsct patients while ensuring their safety. becoming a primary site for the radiation injury treatment network (ritn): are you prepared? laub, l.m. siteman cancer center of barnes-jewish hospital/washing- ton university, st. louis, mo. background: the radiation injury treatment network (ritn) has been established to provide primary treatment facilities for ra- diological or nuclear emergencies resulting in hematopoietic system injury or failure. as a primary site for the ritn, siteman cancer center needed to build a comprehensive plan to successfully meet the milestone objectives, as well as to ensure integration of the pro- tocol into the hospital’s own preparedness plan. objectives: to es- tablish siteman cancer center as a primary site within the ritn the development committee identified four objectives which in- cluded: early involvement by senior leadership; collaboration with hospital/university based environmental health and safety pro- grams; coordinated updates to inpatient and outpatient transplant teams regarding ritn milestones and preparedness planning; and outreach to surrounding states within our region by educating and involving the cancer center’s governmental liaison. method: the senior leadership team was actively involved in the initial re- view of the ritn participation agreements, as well as requirements associated with becoming a primary site. this early involvement se- cured the ongoing resources and support that the developmental team needed to build new policy and process. bringing information about the ritn to the hospital’s broad based environmental health and safety group allowed for efficient integration of the network’s processes into the mass casualty and radiation injury polices, and into the emergency command center that the institution had already in place. frequent updates brought to both the inpatient and outpa- tient teams developed the awareness and knowledge of the roles that clinicians would take in the event of this type of disaster. to ensure that regional states within the territory were aware of our prepared- ness initiatives through the ritn, the governmental liaison to the cancer center was invited to participate in planning efforts. this participation allowed siteman to reach out to state and regional agencies and make its unique capabilities as an ritn site known. results: as a level one trauma center and part of the national disaster medical system, barnes-jewish hospital has a well defined emergency preparedness program. now as one of the thirteen pri- mary ritn sites, siteman cancer center of barnes-jewish hospi- tal holds a comprehensive clinical and organizational plan for emergencies resulting in hematopoietic system injury or failure. pass it on harris, l.n., guess, c.w., frey, m.a., kurtzberg, j. duke university medical center, durham, nc. transfer (hand-off) of patient care has been identified as a high risk period for hospitalized patients. in health care there are numer- ous types of hand-offs including, but not limited to nursing shift changes, physicians transferring on-call, and temporary re-assign- ment of patient responsibility for breaks. the jcaho na- tional patient safety goals demand the implementation of ‘‘a standardized approach to ‘hand-off’ communications, including an opportunity to ask and respond to questions.’’ in the duke pediatric blood and marrow transplant unit (pbmtu) nursing committee developed a protocol for nursing hand-offs that occur during shift change, with the goals to minimize interruptions and provide complete, concise information to the on- coming nurse. standardizing the nursing shift change hand-off on the pbmtu was critically important, as the nurses on this unit ad- minister over , medications and blood products each month. the key component of every shift change is a customized report sheet and safety checklist. this tool provides uniformity in shift change report as all systems are covered, intervascular infusions are identified, labs are reviewed, and doctor’s orders are double checked. a human centered engineering group described the pbmtu nursing hand-off in as ‘‘remarkably efficient and effective’’. their analysis recommends that ‘‘the pbmtu shift hand-off among nurses should be treated as a model for other types of hand-offs within the unit and across duke medical center.’’ the purpose of this poster is to describe the protocol for hand- offs on the duke pediatric blood and marrow transplant unit. effects of guided imagery on hematopoietic stem cell trans- plantation patients kim, h.s. the catholic hsct center, seoul, korea. the present research is a quasi-experimental study based on non- equivalent control group pretest-posttest design, which was pur- posed to examine the effects of guided imagery therapy on immune cells, fatigue and emotional state in hematopoietic stem cell transplantation patients. for patents admitted to -person hospital rooms for hematopoi- etic stem cell transplantation, we conducted guided imagery therapy for weeks from a week before the hematopoietic stem cell trans- plantation to three weeks after, and three times per week and minutes each time. the subjects were patients ( in the exper- imental group, in the control group) who had received hemato- poietic stem cell transplantation at c university hospital during the period from october to april . we measured neutrophils count, total leukocyte count and lym- phocyte count for immune cells. in addition, fatigue was measured with the piper fatigue scale (pfs) modified for this study, and stress was measured with kim hyung-sook’s tool modified and sup- plemented for this study. collected data were analyzed using sas through c -test, fisher’s exact test, t-test and repeated measures anova. the results are as follows. . the total leukocyte count, the neutrophils count and the lym- phocyte count decreased until week from the transplantation and then began to increase from week in both the experimental group and the control group, but the experimental group showed a significantly larger increase in the neutrophils count. . after the experiment, fatigue increased more in the control group than in the experimental group, but the difference was not significant. . after the experiment, stress increased more in the control group than in the experimental group, and anxiety and depression de- creased more in the experimental group than in the control group, but the differences were not significant. according to the results of this study presented above, the guided imagery therapy promoted the recovery of immune cells and re- duced anxiety and depression in hematopoietic stem cell transplan- tation patients. because guided imagery therapy is convenient and 	stem cell transplantation patient family caregivers: a program focused on ‘‘caring for the caregiver’’ 	nursing care of the bone marrow transplant patient in septic shock with acute respiratory distress syndrome 	successful integration of complementary therapies in a combined adult and pediatric bone marrow transplant unit 	preventing falls for hematopoietic stem cell patients 	becoming a primary site for the radiation injury treatment network (ritn): are you prepared? 	pass it on 	effects of guided imagery on hematopoietic stem cell transplantation patients wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ neuropsychiatric symptoms in primary progressive aphasia: phenomenology, pathophysiology, and approach to assessment and treatment part of summary primary progressive aphasia (ppa) is a neurodegenerative syndrome characterized by insidious and progressive loss of language. current diagnostic criteria require symptoms to be largely restricted to language dysfunction for at least the first   years of the syndrome. however, as the disorder progresses  –  and sometimes even in the early stages  –  patients with ppa may exhibit neuropsychiatric symptoms. in this article, we review the phenomenology and frequency of neuropsychiatric symptoms in ppa. among the few studies of this topic that have been performed, there is consistent agreement that neuropsychiatric symptoms are not uncommon among ppa patients. in some cases, particularly the semantic variant of ppa, symptoms are similar to those found in the behavioral variant of frontotemporal dementia. we further review the approach to assessment of behavioral symptoms in ppa and their possible management strategies, and speculate regarding their potential neurobiological substrates. frontotemporal disorders unit & alzheimer’s disease research center, department of neurology, massachusetts general hospital & harvard medical school, ma, usa department of psychiatry, university of manitoba, winnipeg, mb, canada department of neurology, mclean hospital & harvard medical school, ma, usa martinos center for biomedical imaging, massachusetts general hospital & harvard medical school, mgh frontotemporal disorders unit, th street, suite , charlestown, boston, ma , usa *author for correspondence: tel.: + ; fax: + ; bradd@nmr.mgh.harvard.edu � primary progressive aphasia is typically conceptualized as a disorder primarily affecting language, but clinical practice and a review of the literature indicates that neuropsychiatric symptoms are common. � very little is known about the biological basis of neuropsychiatric symptoms in primary progressive aphasia, but a few studies suggest that neurodegeneration in particular brain regions or circuits may underlie some of these symptoms. � there is relatively little systematic research on the clinical characteristics of neuropsychiatric symptoms in primary progressive aphasia, and no evidence-based literature on their management. p ra ct ic e p o in ts neuropsychiatric symptoms in primary progressive aphasia: phenomenology, pathophysiology, and approach to assessment and treatment review mandana modirrousta , , bruce h price , & bradford c dickerson* , primary progressive aphasia (ppa) is a neuro­ degenerative syndrome characterized by the insidiously progressive loss of language abili­ ties [ ]. according to contemporary diagnos­ tic criteria, the diagnosis of ppa requires that aphasia must be the most salient symptom and the major cause of impaired daily living activi­ ties for approximately the first years of the clinical syndrome [ – ]. ppa is usually viewed as one major clinical form of the frontotemporal lobar degeneration (ftld) spectrum of neuro­ degenerative diseases [ ]. depending on the type of language problem, ppa is further sub­ categorized into a nonfluent/agrammatic variant (ppa­g, known previously as progressive non­ fluent aphasia [pnfa]) involving effortful and issn - . /nmt. . © future medicine ltd neurodegen. dis. manage. ( ) ( ), – for reprint orders, please contact: reprints@futuremedicine.com agrammatic speech, a semantic variant (ppa­s, also known as semantic dementia [sd]) involv­ ing impaired single­word comprehension and a logopenic variant (ppa­l, also known as logo­ penic progressive aphasia) involving impaired word retrieval and repetition [ ]. the presence of prominent early neuro­ psychiatric or behavioral symptoms is generally considered exclusionary for ppa. patients with a neurodegenerative syndrome in which these symptoms are the earliest feature may fit crite­ ria for the behavioral variant of frontotemporal dementia (bvftd) [ ]. in spite of this distinc­ tion, which is particularly important for clinical research on these disorders, some patients whose diagnosis fits the criteria for ppa have prominent early neuropsychiatric or behavioral symptoms (a point discussed briefly in the new diagnostic criteria) [ ]. many others have relatively mild but notable symptoms in these domains, par­ ticularly as ppa progresses to involve abilities beyond language. in this article, we review the existing medi­ cal literature that has investigated the neuro­ psychiatric symptoms in patients with ppa. we discuss the phenomenology and clinical features of these symptoms and speculate regarding their neurobiological substrates, highlighting relevant studies when considering the approach to treatment. review of the literature on neuropsychiatric symptoms in ppa a systematic search for papers reporting stud­ ies of neuropsychiatric symptoms in ppa was conducted. the following mesh search terms ‘primary progressive aphasia’, ‘neuro psychiatric’, ‘psychiatric’, ‘behavioral’, ‘neuroanatomy’ and ‘neuroimaging’ were used. subsequently, each subcategory of ppa (‘semantic dementia’, ‘pro­ gressive non-fluent’ or ‘agrammatic aphasia’ and ‘lopogenic’ ppa) was combined with the other search terms and were searched for separately. the studies were identified from the follow­ ing databases: pubmed (medline); embase; psychinfo; and cochrane. the references of all the identified articles were reviewed and relevant references were added to the review list. finally, we entered each of the review list articles into the science citation index of the institute for scientif ic information web of science, and articles citing those in the review list were reviewed and relevant primary research articles were added to the list. research and review articles were restricted to the english language from to present were included. we identified multiple studies reporting on the spectrum of neuro psychiatric symptoms in ppa, eight studies reporting investigations of specific neuropychiatric symptoms and two case reports. �� studies of the spectrum of neuropsychiatric symptoms in ppa the studies varied in patient selection and comparison groups. in some studies, patients with ppa were analyzed as one group, whereas other studies employed subtype categories. the majority of studies used the neuropsychiatric inventory (npi) to measure the frequency or severity of neuropsychiatric symptoms. a few studies used the frontal behavioral inventory (fbi) or the behavioral domain of the clinician dementia rating scale (cdr). except for two longitudinal studies, the rest were either cross­ sectional studies or retrospective chart reviews. table summarizes the studies that investigated the spectrum of neuropsychiatric symptoms in ppa using the npi, fbi or cdr. in addition to the studies that used behav­ ioral scales to measure neuropsychiatric symp­ toms, snowden et al. evaluated the behavior of bvftd and sd patients using a newly cre­ ated semi­structured interview conducted with caregivers [ ]. with regard to basic emotions, all patients were impaired in their capacity to show basic emotions, but sd patients were less impaired than bvftd patients in their capacity to express anger, sadness and disgust. they did, however, commonly show impairments in the expression of fear. in the bvftd group, changes in primary emotions were largely characterized by a reduc­ tion in expression of emotion, whereas some sd patients exhibited exaggerated emotional displays, while others showed diminished emo­ tional responses. with regard to social emotions, both groups showed reduced demon strations of empathy or embarrassment, and increased self­ ishness. as for interest in social interactions, patients with sd and bvftd showed an oppo­ site pattern: bvftd patients were more likely to avoid social contact, whereas sd patients were more likely to seek social contact (in contrast to bozeat et al.’s findings [ ]). eating behaviors were altered in both groups, but with differ­ ent patterns. bvftd patients, especially those with prominent dis inhibited behavior, showed increased eating and were indiscriminate in the type of food they ingested, whereas sd patients neurodegen. dis. manage. ( ) ( ) future science group review modirrousta, price & dickerson ta b le . s u m m ar y o f s tu d ie s o f t h e sp ec tr u m o f n eu ro p sy ch ia tr ic s ym p to m s in p ri m ar y p ro g re ss iv e ap h as ia . st u d y (y ea r) ty p e o f s tu d y p at ie n ts (n ) sc al e o u tc o m e m ea su re m aj o r re su lt s a d d it io n al n o te s r ef . r o se n et  a l. ( ) c ro ss -s ec ti o n al pp a -s ( ) , pp a -g ( ) , pp a -l ( ) , b vf td ( ) a n d a d  ( ) n pi to ta l n pi sc o re , ft d -s p ec ifi c n pi s co re b vf td > p pa -s > p pa -l  ≈  p pa -g ≈ a d – [ ] m ar ra e t a l. ( ) c ro ss -s ec ti o n al pp a -g ( ) , b vf td ( ) a n d a d ( ) n pi m ea n s ev er it y sc o re b vf td > p pa -g ≈ a d n o p pa -g w it h d el u si o n s, h al lu ci n at io n s o r a b er ra n t m o to r b eh av io rs [ ] b an ks a n d w ei n tr au b ( ) c ro ss -s ec ti o n al pp a ( ) (n o t su b ty p ed ) a n d b vf td ( ) n pi n pi s ev er it y sc o re , n u m b er o f sy m p to m s b vf td > p pa n u m b er o f s ym p to m s in lo n g -d u ra ti o n p pa (>   ye ar s) ≈ b vf td m o o d , a g it at io n , n ig h tm ar e sy m p to m s, ap at h y an d a p p et it e sy m p to m s co m m o n in  p pa [ ] fa te m i et  a l. ( ) c ro ss -s ec ti o n al pp a ( ) (n o t su b ty p ed ), c tl  ( ) n pi fr eq u en cy o f sy m p to m s pp a > c tl (a p at h y, d ep re ss io n , a p p et it e, m o to r s ym p to m s, a n xi et y an d ir ri ta b ili ty ) pp a ≈ c tl (s le ep -r el at ed /n ig h t- ti m e sy m p to m s) d el u si o n s, e u p h o ri a an d h al lu ci n at io n s w er e ra re o r a b se n t in p pa [ ] li u e t a l. ( ) c ro ss -s ec ti o n al sd ( ) , b vf td ( ) a n d a d o r m ild c o g n it iv e im p ai rm en t ( ) n pi fr eq u en cy o f sy m p to m s el at io n /e u p h o ri a, d is in h ib it io n , a b er ra n t m o to r b eh av io rs : b vf td  ≈  s d > a d sl ee p d is o rd er s: s d > b vf td a n d a d a p at h y: b vf td > s d – [ ] r o h re r a n d w ar re n ( ) c ro ss -s ec ti o n al pp a -s ( ), pp a -g ( ) , p pa -l ( ) a n d p pa as so ci at ed w it h m u ta ti o n s in th e g rn -p pa ( ) n pi fr eq u en cy o f sy m p to m s fr eq u en cy > % in a ll pp a s u b ty p es : a g it at io n /a g g re ss io n , d ep re ss io n , a n xi et y, a p at h y, d is in h ib it io n , i rr it ab ili ty /l ab ili ty a n d ab n o rm al a p p et it e/ ea ti n g d is o rd er s fr eq u en cy > % in p pa -s : d ep re ss io n , a n xi et y, ir ri ta b ili ty , d is in h ib it io n a n d a b n o rm al a p p et it e/ ea ti n g s ym p to m s fr eq u en cy > % in p pa -g : a g it at io n , d ep re ss io n a n d a p at h y fr eq u en cy > % in p pa -l : a g it at io n , a n xi et y, ir ri ta b ili ty a n d a p at h y n o r el at io n sh ip b et w ee n to ta l s co re a n d e it h er d u ra ti o n o f d is ea se o r m m se s co re [ ] x io n g e t a l. ( ) r et ro sp ec ti ve ch ar t re vi ew pp a w it h a d sp ec tr u m p at h o lo g y ( ) an d p pa w it h ft ld s p ec tr u m p at h o lo g y ( ) n pi fr eq u en cy o f sy m p to m s ea ti n g d is o rd er s, d is in h ib it io n , a p at h y h ad h ig h es t sp ec ifi ci ty fo r ft ld s p ec tr u m p at h o lo g y th e ab se n ce o f d ep re ss io n n o t u se fu l in p re d ic ti n g f tl d p at h o lo g y [ ] k n o p m an et  a l. ( ) lo n g it u d in al (  y ea r) pp a -s ( ) , pp a -g ( ) , pp a -l ( ) a n d b vf td ( ) n pi a n d f b i fr eq u en cy o f sy m p to m s b vf td a n d p pa -s > p pa -g > p pa -l a ft er   m o n th s, o n t h e n pi a n d f b i, th e pp a -s p at ie n ts s h o w ed g re at er w o rs en in g t h an t h e o th er t h re e su b ty p es h al lu ci n at io n s an d d el u si o n s w er e in fr eq u en t, b u t al l o th er sy m p to m s re p o rt ed in  p pa [ ] a d : a lz h ei m er ’s d is ea se ; b vf td : b eh av io ra l v ar ia n t o f f ro n to te m p o ra l d em en tia ; c bi : c am b rid g e be h av io ra l i nv en to ry ; c d r: c lin ic ia n d em en tia r at in g s ca le ; c tl : c o n tr o l; d lb : l ew y b o d y d em en tia ; f bi : f ro n ta l b eh av io ra l in ve n to ry ; f td : f ro n to te m p o ra l d em en tia ; f tl d : f ro n to te m p o ra l l o b ar d eg en er at io n; m m se : m in i m en ta l s ta te e xa m in at io n; n pi : n eu ro p sy ch ia tr y in ve n to ry ; p pa : p rim ar y p ro g re ss iv e ap h as ia ; p pa -g : p rim ar y p ro g re ss iv e ap h as ia n o n flu en t/ ag ra m m at ic v ar ia n t; p pa -l : p rim ar y p ro g re ss iv e ap h as ia lo g o p en ic v ar ia n t; pp a -s : p rim ar y p ro g re ss iv e ap h as ia s em an ti c va ria n t; sd : s em an ti c d em en tia ; v ad : v as cu la r d em en tia . neuropsychiatric symptoms in primary progressive aphasia review future science group www.futuremedicine.com ta b le . s u m m ar y o f s tu d ie s o f t h e sp ec tr u m o f n eu ro p sy ch ia tr ic s ym p to m s in p ri m ar y p ro g re ss iv e ap h as ia (c o n t. ). st u d y (y ea r) ty p e o f s tu d y p at ie n ts (n ) sc al e o u tc o m e m ea su re m aj o r re su lt s a d d it io n al n o te s r ef . k n o p m an et  a l. ( ) c ro ss -s ec ti o n al pr o b ab le a d ( ) , d lb ( ), va d ( ) , b vf td ( ) an d p pa ( ) c d r su p p le m en ta l ‘b eh av io ra l’ an d ‘l an g u ag e’ d o m ai n s fr eq u en cy o f sy m p to m s pp a -s > p pa -g li ke ly t o h av e ab n o rm al r at in g in b eh av io ra l d o m ai n m o st p pa s h ad n o n ze ro r at in g o n b eh av io ra l d o m ai n – [ ] ke rt es z et  a l. ( ) c ro ss -s ec ti o n al pp a ( ) , b vf td ( ) , a d ( ) , va d ( ) a n d d ep re ss iv e d is o rd er s ( ) fb i m ea n f b i sc o re b vf td > p pa  ≈  a d va sc u la r d em en ti a > p pa th e m ai n s ym p to m s ex h ib it ed b y pp a w er e ap at h y, ir ri ta b ili ty a n d , to a le ss er e xt en t, in ap p ro p ri at e b eh av io r – [ ] m ar cz in sk i et  a l. ( ) lo n g it u d in al (  y ea rs ) b vf td ( ) a n d pp a ( ) fb i m ea n f b i sc o re fb i s co re s in p pa r o se in t h e th ir d y ea r t o > fb i s co re s in b vf td r o se in t h e se co n d y ea r a n d r ea ch ed a p la te au in t h e th ir d y ea r a p at h y, a sp o n ta n ei ty , p er so n al n eg le ct , d is o rg an iz at io n , in at te n ti o n , l o g o p en ia , p o o r j u d g m en t, in ap p ro p ri at en es s, re st le ss n es s, a g g re ss io n an d h yp er o ra lit y it em s in cr ea se d o ve r t im e in pp a p at ie n ts [ ] b o ze at et  a l. ( ) c ro ss -s ec ti o n al b vf td ( ) , sd ( ) a n d p ro b ab le a d ( ) c b i fr eq u en cy o f sy m p to m s m o o d s ym p to m s: b vf td  ≈  s d  ≈  a d m en ta l r ig id it y: s d > b vf td > a d st er eo ty p ic b eh av io rs : s d > b vf td > a d so ci al w it h d ra w al : b vf td > s d > a d a p at h y: b vf td > s d > a d ps yc h o ti c sy m p to m s w er e le ss fr eq u en t in th e te m p o ra l v ar ia n t. st er eo ty p ic a n d e at in g b eh av io rs w er e th e st ro n g es t fa ct o rs d iff er en ti at in g f td fr o m  a d [ ] a d : a lz h ei m er ’s d is ea se ; b vf td : b eh av io ra l v ar ia n t o f f ro n to te m p o ra l d em en tia ; c bi : c am b rid g e be h av io ra l i nv en to ry ; c d r: c lin ic ia n d em en tia r at in g s ca le ; c tl : c o n tr o l; d lb : l ew y b o d y d em en tia ; f bi : f ro n ta l b eh av io ra l in ve n to ry ; f td : f ro n to te m p o ra l d em en tia ; f tl d : f ro n to te m p o ra l l o b ar d eg en er at io n; m m se : m in i m en ta l s ta te e xa m in at io n; n pi : n eu ro p sy ch ia tr y in ve n to ry ; p pa : p rim ar y p ro g re ss iv e ap h as ia ; p pa -g : p rim ar y p ro g re ss iv e ap h as ia n o n flu en t/ ag ra m m at ic v ar ia n t; p pa -l : p rim ar y p ro g re ss iv e ap h as ia lo g o p en ic v ar ia n t; pp a -s : p rim ar y p ro g re ss iv e ap h as ia s em an ti c va ria n t; sd : s em an ti c d em en tia ; v ad : v as cu la r d em en tia . neurodegen. dis. manage. ( ) ( ) future science group review modirrousta, price & dickerson had food fads and were more selective in their food consumption. complex repetitive behav­ iors, including hoarding, verbal stereotypies and obsessive–compulsive symptoms, were prevalent in sd, similar to the findings of bozeat et al. [ ]. two studies have investigated the neuro­ anatomic correlates of neuropsychiatric symp­ toms in ppa. in the f irst, npi scores were compared between sd patients, bvftd patients and patients with either alzheimer’s disease (ad) or mild cognitive impairment [ ]. principal component analysis in all patients showed that the presence of disinhibition was associated with decreased volume in the right anterior temporal, right ventromedial prefron­ tal cortex and right amygdala. depression was associated with decreased volume in the right amygdala and right anterior temporal cortex and eating disorders were associated with decreased volume in the right frontal cortex and right ventromedial prefrontal cortex. rohrer and warren recently investigated the neuroanatomic correlates of neuropsychiatric symptoms in ppa subtypes using the npi and voxel­based morphometry [ ]. anxiety, apathy, irritability/lability and abnormal appetite/eat­ ing disorders correlated with reduced gray matter density in the right lateral orbitofrontal cortex, while disinhibition correlated with reduced gray matter density in the left lateral orbitofrontal cortex. other correlations were found between apathy and atrophy in the right dorsolateral pre­ frontal cortex, irritability/lability and atrophy in the right anterior cingulate cortex, and disinhi­ bition and atrophy in the left anterior superior temporal gyrus and entorhinal cortex. �� studies of a single neuropsychiatric symptom in ppa a number of investigations have been performed on a single neuropsychiatric symptom in ppa. with the idea that a relatively isolated language difficulty in a person who is otherwise healthy could make them vulnerable to depression and social withdrawal, medina and weintraub exam­ ined geriatric depression scale (gds) scores and found that a group of ppa patients had higher gds scores than the controls, although on aver­ age not in the ‘depressed’ range [ ]. interestingly, the depressed group was much more likely ( %) than the nondepressed group ( %) to have had a premorbid history of depression. in two studies, banks and weintraub inves­ tigated the lack of insight in patients with ppa, bvftd and ad [ , ]. they asked both the patients and caregivers to rate the fbi and the reponses were compared. ppa patients tended to underestimate their own behavioral changes relative to caregiver estimates, although not as prominently as bvftd or ad patients. in another study of insight, eslinger et al. asked patients with bvftd, pnfa, sd and ad to estimate their performance on tasks and also compared their own ratings on symptom scales to caregivers’ ratings [ ]. they found that fronto­ temporal dementia (ftd) patients significantly underestimated their apathy, meaning that they viewed themselves as much more motivated than their caregivers did. this was also true within the ppa subgroups. empathic concern was overestimated in both pnfa and sd, as was self­monitoring in the sd subtype. one study investigated the prevalence of mis­ identification syndrome among people with different types of dementia [ ]. ad and lewy body dementia groups had the highest preva­ lence of this syndrome (~ %). approximately % of patients with sd (n = ) also endorsed some kind of misidentification symptoms (either by themselves or reported by their caregivers). these symptoms were not present in other ppa subtypes (n = ) or bvftd (n = ). sollberger et al. longitudinally studied inter­ personal traits in a group of patients with ad, bvftd and sd by having patients’ caregivers fill out the interpersonal adjective scales (ias) [ ]. they found that sd was associated with prominent changes in personality trait charac­ teristics. dominance and warmth scores became abnormally low at the moderate­to­severe disease stage, although both showed an early drop from premorbid levels. the extraversion score already showed a significant drop to an abnormally low level at the very mild disease stage. �� studies of neuropsychiatric syndromes in single cases one case report described a -year-old female without any remarkable medical or psychiatric history who developed a full blown panic dis­ order with agoraphobia at years of age [ ]. a year after the panic disorder, the patient exhibited a decline in linguistic fluency, word-finding dif­ ficulties, effortful speech and hesitant utterances with frequent pauses, phonemic paraphasias and transpositional errors. approximately years after the onset of aphasia, she was reported to have developed cognitive decline substantial enough neuropsychiatric symptoms in primary progressive aphasia review future science group www.futuremedicine.com to be consistent with dementia. neuroimaging highlighted left temporal and inferior fron­ tal abnormalities. although the neuro imaging abnormalities in this case are consistent with those of ppa­s, the clinical description of lan­ guage characteristics is inconsistent with this diagnosis, thus leaving the subtype unclear. the second case was a -year-old woman who had received a diagnosis of ppa by her neuro logist years earlier [ ]. initially, she developed gradual but progressive difficulties in word finding and object naming with intact comprehension. as ppa advanced, her speech output and under­ standing of language became compromised. however, she continued to maintain her social activities. computed tomography was reportedly unremarkable. her medical history was signifi­ cant for hypertension. there was no personal or family history of psychiatric illness. later during the course of ppa, she started to disengage her­ self from family and social activities, eat poorly and neglect her appearance. her family inter­ preted these symptoms as a result of worsening language problems. she then developed restless­ ness and episodes of crying. she was admitted to the hospital after she attempted suicide by run­ ning into traffic. she was treated with venlafax­ ine, and was engaged in art, group exercise and pet therapy. she showed improvements in self­ care, appetite and nonverbal interactions after receiving treatment; thus, her mood appeared to improve. in our opinion, this case description is consistent with the ppa­s and illustrates the types of neuro psychiatric symptoms described quantitatively in the studies above. general synthesis of literature on specific neuropsychiatric symptoms the review of the existing literature indicates that, even when measured using a general screening instrument, such as the npi, neuro- psychiatric symptoms are not infrequent in patients with ppa. as this instrument has been used so frequently, we performed a synthesis of the literature reviewed above, focusing on each individual neuropsychiatric symptom construct using the npi as a framework. in addition, at the end of this section we highlight a few other symptom constructs relevant to ppa that are not captured by the npi. table demonstrates the frequency range of each neuropsychiatric symptom reported in ppa. �� delusions & hallucinations psychotic symptoms in ppa are either rare or absent [ – ]. the study by rohrer and warren reported a higher rate of psychotic symptoms in ppa­l and ppa­s ( and %, respectively), which could be related to longer duration or more severe illness [ ]. table . frequency ranges of neuropsychiatric symptoms in primary progressive aphasia. symptom all ppas (%) ppa-s (%) ppa-g (%) ppa-l (%) ref. delusions – – – [ – , , , ] hallucinations – – [ – , , , ] agitation/aggression – – [ , , , , ] depression/dysphoria – – [ – , , ] anxiety – – [ , , , ] elation/euphoria – – [ , , , ] apathy/indifference – – [ – , , ] disinhibition – – [ , , , , ] irritability – – [ – , , ] aberrant motor behavior – – – [ – , , , ] night-time behaviors – – [ , , , ] appetite/eating behaviors – – [ – , , ] mental rigidity – – – [ ] stereotypies/rituals/compulsions – – – – [ , ] distractibility – – – [ ] decrease in self-care – – – – [ , ] poor judgment – – – [ ] social withdrawal – – – – [ , ] lack of empathy/selfishness – – – – [ , ] ppa: primary progressive aphasia; ppa-g: primary progressive aphasia nonfluent/agrammatic variant; ppa-l: primary progressive aphasia logopenic variant; ppa-s: primary progressive aphasia semantic variant. neurodegen. dis. manage. ( ) ( ) future science group review modirrousta, price & dickerson �� agitation/aggression agitation/aggression is more frequent in ppa patients than in controls ( vs %) and increases over time [ ]. it is present in all types of ppa [ , ]; however, it is less severe than in bvftd [ ]. in one study, agitation/aggression was reported in up to % of patients with ppa [ ]. �� depression/dysphoria depression/dysphoria are consistently reported and appear to be the most prevalent psychiatric symptoms across all types of ppa [ , , ]. in fact, one of the case reports described a ppa patient who gradually became depressed and attempted suicide, but she eventually responded to treat­ ment [ ]. we have observed a similar case in our practice. nevertheless, only a subset of patients with these symptoms meet formal diagnostic criteria for clinical depression [ ]. �� anxiety anxiety is reported as frequently as depression in ppa [ , ]. it is observed in up to % of ppa-l patients [ ]. anxiety can be an isolated symptom or a cluster of symptoms severe enough to form an anxiety disorder. in one case report, a patient with no previous anxiety disorder developed a classic panic disorder with agoraphobia, fulfill­ ing dsm criteria, year before the symptoms of ppa slowly emerged [ ]. �� elation/euphoria mood elation/euphoria is not as common as depression in ppa, although it is similarly preva­ lent in bvftd and in ppa [ ], its frequency in the studies ranged between and % [ , , ]. �� apathy/indifference apathy is one of the most common symptoms in ppa patients [ , ] and compared with controls, the frequency of apathy is significantly higher in ppa [ ] and increases over time [ ]. in patho­ logically confirmed ppa cases, apathy was one of the clinical features that suggested ftld rather than ad pathology [ ]. �� disinhibition disinhibition is less frequent and less severe in ppa than in bvftd [ , ]; however, its fre­ quency increases over time [ ]. in one study, up to % of ppa-s patients exhibited disinhibi­ tion [ ]. in ppa, disinhibition is one of the dis­ tinguishing features that points toward ftld pathology rather than ad pathology [ ]. �� irritability banks and weintraub reported a similar propor­ tion of mood symptoms including irritability in ppa and in bvftd [ ]. irritability is more frequent in ppa when compared with controls [ ], and is one of the most frequent symptoms reported in all types of ppa [ ]. �� aberrant motor behaviors aberrant motor behaviors are present in ppa, although they appear to be less frequent than other neuropsychiatric symptoms [ , , ] and less severe than similar symptoms in bvftd [ ] (except one study that did not find any difference in the frequency between ppa and bvftd [ ]). �� night-time behaviors ppa patients seem to have a relatively low fre­ quency of night­time behaviors (in one study the frequency was similar to that of controls) [ ], although the frequency increases over time [ ]. �� appetite/eating behaviors compared with controls, changes in eating behaviors are more evident in ppa patients [ ]. over years of longitudinal follow­up, hyper­ orality significantly increased over time in ppa patients [ ]. this symptom (sweet food pref­ erence) was also highly associated with ftld pathology rather than ad pathology in ppa [ ]. �� insight ppa patients are better than bvftd and ad patients at estimating their ability to perform tasks such as memory tasks. however, relative to other general or physical characteristics, such as weight or eyesight, their estimation of behavio­ ral symptoms is less accurate [ , , ]. for exam­ ple, ppa patients may lack insight into loss of empathic concern and apathy [ ]. �� obsessive–compulsive spectrum symptoms compulsive and repetitive behaviors are quite common in the ppa­s subtype of ppa. in fact, the study by snowden et al. showed that simple motor stereotypies such as lip smacking, hand rubbing and foot tapping were as common in ppa­s as those in bvftd, and complex routines, verbal stereotypies and repetitive themes were more frequent in ppa­s than bvftd patients [ ]. in the same study, more than % of ppa­s patients exhibited some form of repetitive theme neuropsychiatric symptoms in primary progressive aphasia review future science group www.futuremedicine.com and more than % of them were reported to have verbal stereotypies. furthermore, ppa­s patients exhibited obsessive and compulsive symptoms, such as excessive worrying and performing the same tasks again and again, more frequently than bvftd patients. similar observations were reported by bozeat et al. [ ]. �� loss of empathy loss of empathy, selfishness and no sense of embarrassment were ubiquitously found in ppa­s patients [ ]. �� personality changes personality changes are a classic symptom early in the course of bvftd. by contrast, to fulfill diagnostic criteria for ppa, a patient must be largely free of these symptoms during the first years of the disease [ ]. however, one recent study demonstrated that ppa­s is accompanied by subtle or overt changes in personality (domi­ nance, warmth and extraversion) even during the early stages [ ]. other symptoms common in ppa-s, such as selfishness, lack of empathy and disinhibition, may also be viewed as personality changes [ ]. neuropsychiatric symptoms across ppa subtypes taken together, the literature suggests that ppa­s patients commonly exhibit neuro­ psychiatric symptoms, often relatively early and in a fairly stereotypical fashion. many of these symptoms are similar to those of bvftd, including loss of empathy, changes in eating behavior, compulsive behavior and disinhibi­ tion. although these symptoms are highly consistent with ftd, depending on when they begin and how they are reported by inform­ ants, it may be difficult for the clinician to be confident in assigning a subtype diagno­ sis (i.e., bvftd vs ppa­s vs sd). in fact, in the neary et al. diagnostic criteria for ftd, features considered supportive of a diagnosis of sd included loss of sympathy or empathy and narrowed preoccupations (mental rigid­ ity) [ ]. aberrant motor behavior is also com­ monly reported in some studies; in our experi­ ence this often includes elaborate movements related to repetitive or compulsive behaviors, although there has been little focused study of this topic. depression is also reported as com­ mon in ppa­s in some studies; in our experi­ ence, however, at least some patients say certain phrases repetitively (i.e., catchphrases) that appear to express negative emotion (e.g., “i feel so stupid” or “i used to know that and now i just don’t know anything”), but with mini­ mal affective behavior consistent with depres­ sion, and a structured interview with some of these patients’ caregivers reveals little behav­ ior in daily life that appears consistent with a diagnosis of depression. in ppa­g, neuropsychiatric symptoms are less frequent initially, but as the illness pro­ gresses it becomes increasingly common to see apathy, depression or irritability. in some cases these symptoms are present early in the illness, which may lead to misdiagnosis as a primary psychiatric disorder (commonly depression). in ppa­l, neuropsychiatric symptoms are relatively infrequent early on, but increase as the illness progresses and include agitation, anxiety, irritability and apathy. in many cases the clinical phenomenology of neuropsychiatric symptoms appears similar to that seen in ad. neuroanatomic substrates of neuropsychiatric symptoms in ppa a predominantly right­sided distribution of frontal and temporal areas has been implicated in the pathogenesis of many behavioral symp­ toms in ftd, such as apathy, disinhibition and abnormal eating behavior [ – ]. right anterior temporal lobe atrophy is correlated with disin­ hibition and depression [ ]. right orbitofrontal, insular and striatal atrophy is correlated with eating disorders [ ] and right ventromedial pre­ frontal cortex with aberrant motor behaviors, eating disorders and disinhibition [ , ]. in the study by rohrer and warren, anxiety, apathy, irritability and appetite changes were correlated with right hemisphere atrophy in ppa [ ]. in ppa­s, atrophy is usually reported to be pre­ dominant in the left temporal pole and ventral left temporal lobe, but many patients exhibit subtle atrophy or hypometabolism in orbital and ventromedial prefrontal regions, as well as the ventral anterior insula and striatum; fur­ thermore, a lesser but nontrivial degree of right hemisphere involvement is common [ , ]. right frontal abnormalities have also been observed in nonfluent aphasia [ – ]. in our experience, there is often at least subtle atrophy in homolo­ gous regions of the right hemisphere in ppa at baseline assessment; right hemisphere structures commonly become involved as the condition progresses (figure ). neurodegen. dis. manage. ( ) ( ) future science group review modirrousta, price & dickerson management of neuropsychiatric symptoms in ppa given the heterogeneity of the underlying pathology in ftd, and the wide range of clini­ cal phenotypes involving behavioral/psychiatric, cognitive and motor symptoms, clinical trials with a homogeneous group of patients are sparse [ ]. the selection of outcome measures is also challenging. general behavioral rating scales such as the comprehensive psychiatric rating scale (cprs) do not capture all the behavioral abnormalities of ftd. while the npi [ ], the npi-questionnaire and the behavioral pathology in alzheimer’s disease (behave­ad) [ ] scales are aimed at a general dementia population rather than specifically at the ftd spectrum, they have been employed as outcome measures in some trials in ftd. symptoms that commonly present in ftd, such as obsessive–compulsive spectrum behaviors, personality changes and lack of empathy, are not captured by these scales. the fbi and cambridge behavioral inventory (cbi) were developed to more specifically cap­ ture the behavioral features of ftd [ , , ], but to date they have only been used in a handful of trials. table  lists some instruments that are used to measure behavioral/psychiatric symp­ toms in patients with dementia. knopman et al. studied the validity of different cognitive and behavioral tests as outcome measures in a popu­ lation of patients with ftd [ ]. they found that while the modified cdr and clinical global impression of change scale demonstrated decline in the majority of patients, almost a third of patients improved on behavioral scales (npi and fbi), suggesting that these instruments may not be ideal for use as outcome measures in ftd. nevertheless, they may be of use in trials of interventions targeting specific types of symptoms, particularly if such trials recruit patients with more prominent neuropsychiatric symptoms at baseline. in clinical practice, neuropsychiatric symp­ toms do not often resolve completely, yet over time, their frequency or severity may intensify or attenuate. it is critical to try to use valid scales to monitor these symptoms over time, particularly if empirical management strategies are attempted. the management of symptoms should be tailored to individual patients and caregivers. education of caregivers (as well as patients if possible) about the safety issues and the nature of the neuropsychiatric symptoms is an important first step in management. referral of families to the association for frontotemporal degeneration and the alzheimer’s association will provide further information and help fami­ lies connect with the existing support groups. one reasonable strategy for prioritizing the goals of management is to choose one symptom at a time to focus on (usually the most disa­ bling symptom). a multidisciplinary care plan involving a psychiatrist or neurologist, or geri­ atrician specializing in these symptoms, a social worker, and, if possible, a nurse practitioner or psych ologist can assist families in developing behavioral strategies and providing psycho social support [ ]. most symptoms are best managed by behavioral interventions. however, if the right right lateral lateral medial medial left left figure . cortical atrophy in a mixed sample of patients with primary progressive aphasia. (a) baseline cortical atrophy and (b) progression of atrophy after  years, illustrating not only the spread within the left hemisphere, but also the increasing degree of atrophy within right hemisphere structures. red–yellow indicate localization of thinner cortex in the group of primary progressive aphasia patients compared with the matched control group. neuropsychiatric symptoms in primary progressive aphasia review future science group www.futuremedicine.com response is inadequate or symptoms are promi­ nent, empirical pharmacological treatments can be tried. to date, no published studies report on clini­ cal trials attempting to treat neuropsychiatric symptoms specifically in a ppa sample. however, as is apparent from this literature review, these symptoms are not uncommon in ppa and despite the lack of adequate research­based evi­ dence, we need to manage the neuro psychiatric symptoms of these patients in day­to­day clini­ cal practice. therefore, we must look to studies in bvftd patients, mixed samples of ftd or other dementia patients for guidance. below we summarize the results of clinical trials that have measured behavioral or psychiatric symptoms as outcomes in patients with ftd, organized by the type of pharmacological agent tested. �� antidepressants a randomized double-blind study in subjects with bvftd using trazodone demonstrated a decrease in npi scores by improvement of irrita­ bility, agitation, depression and eating disorders [ ]. data regarding paroxetine are conflicting; while one study did not find any improvement in the npi or cbi of patients with bvftd (n = ) [ ], two others showed an improve­ ment in behavioral symptoms [ , ]. in one ran­ domized study, eight bvftd patients per group received mg paroxetine or mg piracetam for months. patients treated with paroxetine showed an improvement in behavioral symptoms reflected by a reduction of caregivers’ distress [ ]. in another study, patients with bvftd were treated with fluoxetine, sertraline or parox­ etine for months. after treatment, disinhibi­ tion, depressive symptoms, carbohydrate craving and compulsions all showed improvement in at least half of the subjects in whom they had been present [ ]. in four ppa­s patients with hostile behavior, sertraline reduced aggressive behaviors and total npi questionnaire scores [ ]. two case series studied the efficacy of moclobe­ mide and selegiline in managing behavioral symp­ toms in ftd. six patients with bvftd treated with moclobemide for days showed variable improvement in depression, aggressive symp­ toms, irritability, distractibility, mental rigidity, and stereo typy of speech and perseveration [ ]. in three bvftd patients, selegiline improved npi scores and demonstrated some benefit on table . neuropsychiatric and behavioral scales used in dementia. scales symptoms measured ref. npi and npi-q delusions, hallucinations, agitation/aggression, depression/dysphoria, anxiety, elation/euphoria, apathy/indifference, disinhibition, irritability, aberrant motor behavior, night-time behaviors and eating/appetite behaviors (npi is a caregiver/informant interview; npi-q is a self-administered questionnaire with written instructions) [ , ] fbi apathy, aspontaneity, indifference/emotional flatness, inflexibility, disorganization, inattention, personal neglect, loss of insight, preservation, obsession (stereotypy), hoarding, inappropriateness, poor judgment and impulsivity, restlessness/roaming, irritability, aggression, hyperorality/food fads, hypersexuality and utilization behavior [ ] frs lack of interest, lack of normal affection, confusion in unusual surroundings, restlessness, impulsivity and lack of judgment [ ] cbi challenging behaviors (uncooperative, threatens to harm self/others), disinhibition, eating habits, sleep, stereotypic and motor behaviors, motivation and insight/awareness [ ] behave-ad paranoid and delusional ideation, hallucinations, activity disturbances, aggressiveness, diurnal rhythm disturbances, affective disturbances, anxieties and phobias [ ] npi-c delusions, hallucinations, agitation, aggression†, dysphoria, anxiety, elation/euphoria, apathy, disinhibition, irritability/lability, motor disorders, sleep disorders, appetite and eating disorders, and aberrant vocalization [ ] ftd inventory behavioral disinhibition, violation of social norms, apathy, hypomania-like behaviors, loss of interpersonal warmth or empathy, loss of insight, decline in personal hygiene and grooming, mental rigidity and inflexibility, distractibility and impersistence, hyperorality and dietary changes, compulsive and stereotyped behavior, and environmental dependency [ ] gds (short form) satisfaction with life, dropping activities or interests, feeling life is empty, getting bored, being in good spirits, being afraid that something bad is going to happen, feeling happy, feeling helpless, preference to stay at home, having problems with memory, thinking it is wonderful to be alive, feeling worthless, feeling full of energy, feeling hopeless and thinking most people are better off than they are [ ] †note that aggression has been separated from agitation. behave-ad: behavioral pathology in alzheimer’s disease; cbi: cambridge behavioral inventory; fbi: frontal behavioral inventory; frs: frontotemporal dementia rating scale; ftd: frontotemporal dementia; gds: geriatric depression scale; npi: neuropsychiatry inventory; npi-c: neuropsychiatric inventory–clinician rating scale; npi-q: neuropsychiatry inventory questionnaire. neurodegen. dis. manage. ( ) ( ) future science group review modirrousta, price & dickerson cognition by reducing errors on the stroop and paced auditory serial addition task [ ]. �� cognitive enhancers an open-label study of bvftd, ppa-s and nine ppa patients using memantine for weeks caused a transient improvement in npi scores predominantly in the bvftd group [ , ]. in another case series, memantine improved total npi scores in three bvftd subjects with specific improvement in scores of apathy, agi­ tation and anxiety [ ]. however, in a different study, ­week treatment of bvftd patients with memantine did not change the npi or the fbi scores [ ]. unfortunately, the data from the most recent clinical trial of memantine in ftd do not look encouraging with regard to npi or other outcome measures [boxer a, pers.  comm.]. rivastigmine reduced caregiver burden as well as npi, behave-ad and cornell depression scale scores, when given to bvftd patients (n = ) for months [ ]. on the other hand, donepezil worsened bvftd patients’ (n = ) scores on a novel scale called the ftd inventory and increased disinhibition and compulsivity [ ]. �� atypical antipsychotics in a case report, risperidone improved agitation, delusions and hallucinations in bvftd [ ]. another case study demonstrated that aripepra­ zole partially restored frontal glucose metabolism in a bvftd patient, which the authors interpret as suggesting a beneficial role in frontal func­ tions [ ]. czarnecki et al. reported that three patients with bvftd developed extrapyramidal symptoms and tardive antecollis after treatment with olanzapine, risperidone or quetiapine [ ]. it is not clear from this report whether there was any benefit in any of these cases. proactively assess neuropsychiatric symptoms in ppa assess safety and identify the most disabling symptom(s) and their severity � educate patient and caregiver(s); � identify behavioral strategies for management; � consider referral of patient and caregiver(s) for psychosocial support; � consider empirical use of pharmacologic agents agitation, aggression atypical antipsychotics evaluate effectiveness and need for continued pharmacologic treatment every months; consider a careful trial of withdrawing psychotropic medications ssris, mood stabilizers ssris, mood stabilizers, trazodone, moclobemide acheis, memantine, stimulants disinhibition depression, euphoria, irritability, anxiety, obsessive−compulsive spectrum symptoms apathy, indifference figure . clinical algorithm for empirical assessment and management of behavioral and neuropsychiatric symptoms in primary progressive aphasia. acheis: acetylcholinesterase inhibitors; ppa: primary progressive aphasia; ssri: selective serotonin reuptake inhibitor. neuropsychiatric symptoms in primary progressive aphasia review future science group www.futuremedicine.com �� miscellaneous agents in a single case of bvftd, quantitative eeg demonstrated profound greater left than right bi­frontotemporal slowing, which partially nor­ malized after methylphenidate administration [ ]. in a randomized double­blind trial, methyl­ phenidate reduced risk betting in the cambridge gambling task in bvftd patients (n = ) but had no effect on any other measures [ ]. in a case report, topiramate reduced alcohol abuse in bvftd but not other obsessive–compulsive tendencies [ ]. a very recent study of oxytocin in bvftd demonstrated preliminary data showing a beneficial effect on the npi [ ]. in summary, while it is helpful to have this small amount of literature, the small sample sizes (less than participants), heterogeneity of participants and variability in outcome measures leave many questions about the utility of existing agents in the management of neuropsychiatric symptoms in ftd. at present, the treatment of these symptoms in ftd continues to be chal­ lenging and largely reliant on individualized empirical approaches. figure displays a diagram of our usual approach to the assessment and man­ agement of neuro psychiatric symptoms in ftd, with the caveat that ‘one size does not fit all’ in this or any other dementia. conclusion & future perspective although much of the scientif ic and clini­ cal literature on ppa focuses on the canonical language impairments, as the illness progresses and extends beyond brain language networks neuropsychiatric symptoms become more com­ mon. furthermore, it is not infrequent for neuro­ psychiatric symptoms to be present during the early stages of ppa. in the ppa­s subtype, in par­ ticular, behavioral symptoms are very common and similar to those in bvftd. on the other hand, ppa­g and ppa­l exhibit fewer behavioral symptoms that some have characterized, at least in some patients, as more reminiscent of those observed in ad [ ]. while existing instruments are valuable, it is worth considering the development of new instru­ ments for the measurement of neuro psychiatric symptoms tailored toward ppa. it might be useful for studies of putative disease­modifying therapies to measure neuropsychiatric symptoms, in addition to language, as an indicator that an intervention can slow progression of or other­ wise ameliorate ppa. ultimately, clinical trials of potential treatments aimed at improving the lives of ppa patients and their families need to focus not only on language and general cognitive function but also on neuropsychiatric symptoms. disclaimer the content of this article is the sole responsibility of the authors and does not necessarily represent the official views of the nih. acknowledgements the authors wish to thank the patients and families who participated in their research. bc dickerson would also like to thank d hochberg for her continued partnership in their primary progressive aphasia program. financial & competing interests disclosure this study was supported by nih grants from the us national institute on aging (r -ag and p -ag ), the national institute of neurological disorders and stroke (r -ns ), the alzheimer’s association and the sidney r baer jr foundation. the authors have no other relevant affiliations or financial involvement with any organization or entity with a finan- cial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. no writing assistance was utilized in the production of this manuscript. references papers of special note have been highlighted as: �� of interest ����� of considerable interest mesulam mm. primary progressive aphasia: a -year retrospective. alzheimer dis. assoc. disord. 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( ) ( ) future science group review modirrousta, price & dickerson original citation: simon chester evans, julie barrett, neil mapes, june hennell, teresa atkinson, jennifer bray, claire garabedian and chris russell ( ) "connections with nature for people living with dementia", working with older people, doi: https://doi.org/ . /wwop- - - permanent wrap url: https://eprints.worc.ac.uk/ / copyright and reuse: the worcester research and publications (wrap) makes this work available open access under the following conditions. copyright © and all moral rights to the version of the paper presented here belong to the individual author(s) and/or other copyright owners. to the extent reasonable and practicable the material made available in wrap has been checked for eligibility before being made available. copies of full items can be used for personal research or study, educational, or not-for-profit purposes without prior permission or charge, provided that the authors, title and full bibliographic details are credited, a hyperlink and/or url is given for the original metadata page and the content is not changed in any way. publisher’s statement: copyright © , emerald publishing limited a note on versions: the version presented here may differ from the published version or, version of record, if you wish to cite this item you are advised to consult the publisher’s version. please see the ‘permanent wrap url’ above for details on accessing the published version and note that access may require a subscription. for more information, please contact wrapteam@worc.ac.uk https://doi.org/ . /wwop- - - https://eprints.worc.ac.uk/ / w orking w ith o lder people connections with nature for people living with dementia background ‘green dementia care’ refers to indoor and outdoor experiences and activities that aim to promote health and wellbeing through interaction with nature for people living with dementia. this can be passive (e.g. sitting in the garden) or active (e.g. outdoor exercise such as walking). there is growing evidence to suggest that the natural environment improves physical and mental health in general (bowler et al. ; alcock et al. ; cox et al. ) and for older people in particular (robson and troutman-jordan ; wright and wadsworth ; bragg and atkins, ). reported benefits include reduced heart rate and blood pressure, reduced cardiovascular and respiratory disease, reductions in stress and depression, improved confidence and mood and increased social interaction (mcnair, ; de rui et al., ; robson and troutman-jordan, ). increasing numbers of people with dementia are supported in care homes, while extra care housing is now widely viewed as an alternative form of accommodation that can provide opportunities for maximising independence (evans, ). it has been estimated that % of care home residents are living with dementia (alzheimer society, ). the prevalence of dementia among extra care residents is less clear with estimates varying between % (darton et al., ) and % . while people with dementia are likely to share many of the benefits of connecting with nature, there is evidence of further benefits that are specific to the symptoms and circumstances of their condition. these include reduced agitation, improved sleep, reduction in incidence of falls and use of psychotropic drugs, improved communication and higher levels of social interaction (whear et al., ; blake and mitchell, ; mapes et al., ; de boer et al., ). green care for older people in care homes and extra care housing can take place outdoors within the care setting’s outdoor space (e.g. gardening, horticultural activities or outdoor exercise), outdoors further afield (e.g. visits to arboretums, botanical gardens or farms and walking trips) or indoors (e.g. looking after indoor plants, arts and crafts using flowers, interacting with pets). many care homes and extra care schemes have gardens or outdoor green spaces, but evidence suggests that many are underused by the residents, particularly those living with dementia (rendell and carroll, ; clarke et al., ). this is often due to organisational risk aversion and individual staff concerns about safety and security as well as outdoor spaces that are not fully accessible (whear et al., ; mapes et al., ) . for people with dementia the loss of spontaneous and scheduled connections to nature in their lives is often sudden and occurs when they move from their own home or hospital. ensuring access to the outdoors for www.housingandcare .co.uk/about-us/our-work-dementia/dementia-action-plan/ page of working with older people w orking w ith o lder people people living with dementia is not only a matter of good practice in dementia care but also a matter of human rights and social justice (argyle et al. ). this paper reports on a project that aimed to explore the opportunities, benefits, barriers and enablers to interaction with nature for people living with dementia in residential care and extra care housing schemes in the uk. methods following a review of the literature, an online survey was developed to investigate the current provision of green dementia care for people living with dementia in accommodation and care settings. it covered four main areas: demographic information about the scheme; current green dementia care experiences and activities; barriers and enablers to providing green dementia care; and the perceived impacts of green dementia care. quantitative responses were analysed using descriptive and comparative statistics, while the qualitative answers were subject to thematic analysis. in depth-case study research was carried out at three care homes and three extra care housing schemes. these were recruited from survey respondents as examples of good practice in promoting green dementia care while providing diversity in terms of service provider and geographical location. managers at each site identified four residents with dementia and three members of staff who were willing to take part in research interviews. topics covered included what nature-based activities were offered, who organised them, who took part, the perceived impacts, and any facilitators or barriers. interviews were recorded and transcribed, and analysed for thematic content with the aid of specialist software. approval for the study was given by a university ethics committee. findings survey findings survey responses were received, percent from extra care housing schemes, percent from residential care homes percent from nursing care homes, three percent from retirement villages, one percent from continuing care schemes (extra care or retirement scheme with residential care on the same site). the remaining eight percent were from unknown sources. the majority were from england ( %), with one respondent from wales, and one from scotland. % described their location as urban, % suburban, % rural and % did not answer this question. respondents ranged from small care homes with fewer than ten residents through to large extra care schemes with over a hundred residents. across the homes and schemes that responded to the survey, an average of . percent of residents were reported as having diagnosed or suspected dementia. page of working with older people w orking w ith o lder people of the outdoor green dementia care activities reported, the most common were walking in the care setting garden which was offered by percent of all respondents (all nursing care homes, % of residential care settings and % of extra care schemes). this was followed by simply being outdoors ( % of all respondents) and gardening ( % of all respondents). animal visits were also popular with all care homes ( %). residents were more likely to be allowed to keep personal pets in extra care housing ( %) than in nursing and residential care homes ( %), while nursing care homes were more likely to offer outdoor exercise ( %) than other care settings ( % for residential care homes and % for extra care housing). in terms of nature-based experiences and activities further afield, nursing care homes were most likely to offer regular outings ( %) and residential care homes were the most likely to offer walking more widely in the local area (almost %). extra care schemes were least likely to offer indoor nature-based activities such as arts and crafts ( %), animal visits ( %), indoor gardening ( %) and watching nature programmes ( %), while nursing care homes were most likely, with animal visits, indoor gardening/plants and watching nature programmes being offered by over percent. seventy six percent of respondents said that nature-based activities were offered on up to two days a week. spontaneous engagement with nature outside of organised activities was felt to be possible by the vast majority of respondents (almost %). nursing care homes were particularly positive about spontaneous engagement, with only % responding ‘no’ compared to % for residential care and % for extra care. activity coordinators were most likely to run organised nature-based activities for residents with dementia, although other staff were also able to lead activities. in extra care settings, residents were more likely to be involved in running activities themselves than in nursing care homes or residential care. respondents reported a wide range of positive impacts for residents with dementia who took part in nature-based activities. these included being more relaxed, improved mood, higher levels of social interaction, improved sleep, greater appetite, fewer falls, and decreased medication. there were also a small number of examples of negative impacts. for example, one resident experienced higher levels of anxiety due to a fear that chicks would fall out of a bird nest they were watching. it was also reported that being outdoors could trigger frustration at no longer being able to do as much as before on a physical level. positive impacts were also claimed for staff as a result of taking part in nature-based activities including increases in job satisfaction (over % of respondents indicating a positive effect), morale (over %) and confidence (almost %), as well as reduced sickness (over %) and better staff retention (over %). a variety of factors were identified as key to providing opportunities including the availability of staff and volunteers, financial resources, transport, attitudes to safety and risk, staff expertise, management support, and the accessibility of outdoor spaces. page of working with older people w orking w ith o lder people case study findings interviews were carried out at the six research sites with residents ( extra care housing/ care home) five managers ( extra care/ care home) and other members of staff ( extra care housing/ care home) whose roles included care assistant and activity coordinator. opportunities for nature-based activities residents and staff who were interviewed described a wide range of opportunities for connecting with nature. some activities were planned, such as gardening clubs, while others were more spontaneous. some residents mostly took part in passive, indoor activities such as watching birds through a window: yes. i can lie back on this [indicated his bed] and look up at this one [bird feeding tray attached to outside of window]. of course, you get the odd ones that keep coming in and they are quite exciting. (care home resident) passive engagement with the natural environment in the outdoor spaces of the care settings consisted primarily of observing and listening to nature while sitting in the garden: i go and sit outside sometimes. because i know the times that they [the birds] are coming and i then walk down that passage there onto the lawn – have you seen it? (care home resident) animals played an important part in indoor engagement with nature, both in terms of residents having their own pets and animals being brought indoors to visit residents. one care home had its’ own farm where residents were able to pet, handle and feed the animals, as well as growing vegetables for them to eat. those who can, can come outside and help me put the animals to bed – okay, it’s only the guinea pigs and the rabbits, and if they help me chop up the food, they can walk into that enclosure, put the food in the hutch, and say, bedtime, and the guinea pigs will all run in and we shut the doors to keep the fox out. (care home activity coordinator) this resource also provided opportunities to bring nature indoors for residents who were unable to go outside: people who are bedbound, having the animals come into their bedroom with a bit of food that we’ve grown and just having the animal on their bed to feel the warmth, page of working with older people w orking w ith o lder people the guinea pigs are so light they don’t hurt, so that is a nice thing. (care home activity coordinator) many of the case study sites arranged special outdoor events in the summer such as tea parties, maypole dancing and open days when the residents can engage with the wider community. we've had outdoor fayres, so we've had big open days where the residents get involved. they have ice cream and we've had a pig roast outside, so they’ve all enjoyed the sunshine out there and the activities there with the community. (extra care housing manager) all of the case study sites organised regular trips which often involved the natural environment such as visits to garden centres, woodland walks and boat trips. most of the managers and staff interviewed felt that they offered enough opportunities for residents to connect with nature. i think we do. i mean, we've got lovely grounds and we’re always encouraging daily… i mean, if it's pouring with rain then it's a little bit more difficult but the activities team have an active programme of things that can be done, ideally outside. things like painting, nature, potting plants, things like that. and they have lots of trips out. (care home homemaker) however, some felt that there was always more that could be done to enable contact with nature. realistically if we had another activities i could get everybody out every day, but with budgets and stuff like that, we’re lucky to have four of us, so i think we do a lot more than most homes are able to do. (care home activity coordinator) practical arrangement for enabling residents to connect with nature varied considerably across the case study sites. at one of the extra care housing schemes they were organised by care staff, the residents themselves or external organisations, while at the other two they were run by an activity coordinator with the support of volunteers. one care home had an ‘independence and wellbeing team’ who organised activities while the manager at a second home took on this role and the third had a -person activity team: what we do in everyday life is important to our residents. just because they’re in a nursing home doesn’t mean that life stops, so making sure that there’s a reality of their life. the animals have a massive impact because it’s giving them a purpose every single day. it’s giving them something to look after. it’s giving them responsibility again. (care home lead activity coordinator) motivation for involvement in nature-based activities page of working with older people w orking w ith o lder people residents described various reasons for taking part in nature-based activities. for some it was something they had always enjoyed and appeared to be a core part of their self- image/identity: i think anything to do with nature, to me, is a fascination. ok. i love people and all the rest of it, but when you look at just little things … there was a good blossoms out together and it was lovely, you could just open the window a bit more and … click! (care home resident) a number of personal reasons were given for discontinuing favourite nature-based pastimes, with the most common being reduced mobility and physical ability. i’ve got bad knees and i can’t walk without the [points to walker]. my knee tends to give way sometimes, you know. (care home resident) when you have arthritis and you ache everywhere, it is not easy. (extra care housing resident) the impacts of nature-based activities residents reported a wide range of benefits that they experienced as a result of taking part in nature-based activities including improved mood, remembering positive experiences and bringing a sense of freedom: you feel a bit more freedom than when i’m in here. (care home resident) staff also mentioned many ways in which they felt nature-based activities had a positive effect on the wellbeing of residents with dementia. several spoke of how some residents demonstrated high levels of engagement when taking part in activities of this sort: behaviour-wise, i mean, like that gentleman there, really engrossed, really enjoying what he's doing. the first week, he planted a plant, he pulled it up, he planted a plant, pulled it up. he did that for half an hour, the same thing over and over. his interaction today has been so much more expansive, he's been showing a variety of skills, far more than i would ever expect, really. (care home homemaker) others suggested that they promoted a sense of freedom and creativity: we ended up sitting with the ducks for about an hour. and there was just nothing going on really. i went and got myself a chair, sat next to her, and we were just watching them. and she was just talking about them and making up stories, which was really funny. like she was just telling me that they were…the ducks were going shopping, oh look, now he’s going off into the asda. i was like, where’s this coming from? (care home lead activity coordinator) page of working with older people w orking w ith o lder people for one manager there was a link between taking part in nature-based activities and increased social interaction: well, i feel it's stimulation, relationship-building. it stops them from being isolated, i feel that it allows them to build confidence. i feel it stops, like i say, the isolation and the withdrawal. (extra care housing estate manager) there was also a positive effect on inter-generational contact when families visited: yeah, it means that the children are more happy to come and visit grandma or great- grandpa or whatever because there’s something for the children to do here, and the grandparents or great-grandparents enjoy taking the children out to their new garden and showing them the animals. (care home activity coordinator) one activity coordinator mentioned the calming effect of contact with animals for some care home residents: a lot of our residents that can get agitated or upset or they’re feeling anxious, we find that the pet therapies and the pet farm have sort of brought that out of them a little bit. (care home lead activity coordinator) integrating nature with daily activities also appeared to have a positive impact on staff morale, feelings of empowerment and job satisfaction. staff at some of the case study sites enjoyed getting involved in activities with the residents so much that they, and their families, would volunteer to help with activities in their spare time: it’s a pleasure for me to be honest. i love being outside as well, so it ticks all the list for me so. i don’t mind going and mucking out and getting dirty. (care home activity coordinator) staff who got particularly involved in outdoor nature-based activities considered it to be enjoyable and a break from work, while one respondent felt that it helped care staff to get to know the residents better: the staff actually get to see a different side to a person, because when you’re delivering personal care, you don’t necessarily get to the bottom of that person, do you, you know what i mean? (extra care housing activities coordinator) enablers and challenges to connecting with nature a wide range of factors were identified as having an impact on the provision of opportunities for nature-based activities. key among these was access to and the accessibility of outdoor spaces. this appeared to be good at most of the case study sites, as indicated by the following example: page of working with older people w orking w ith o lder people in the residents lounge we tend to leave patio doors open so that it’s more of a flow onto the patio and the raised area. and the path that goes all the way around the building is like a little walk, so you can do a circular walk, you don’t have to walk to somewhere and come back. and there are benches along the way. (extra care housing estate manager) however, the physical layout of buildings could be an obstacle to spontaneous, independent access: so if you're upstairs you would have to ask, if you're downstairs you can just do it if you're mobile. so i would think we need to think really carefully about people that aren't mobile that people might not be able to ask. (care home homemaker) one care home felt able to offer independent access to the garden by providing a remote alarm to a resident with dementia: [resident] has dementia but he still has the capacity to make a decision. and he’s in an electric chair so he’s alright, he’s safe out there. and he always comes and gets a buzzer before he goes out. so he likes to sit out there. (care home lead activity coordinator) however, access was not so straightforward for residents who used wheelchairs: yes, because i am in a wheelchair. so i need someone to take me out. because we’ve got to go downstairs. and then i need somebody to bring me back. (care home resident) in some care homes the majority of residents who went outdoors were carefully monitored: apart from two residents, everybody has to be accompanied. the residents that do go out, if we spot them, we just go out and put mobile alarms around them so they’ve got that if they need us. if they have capacity and if they’re safe outside, then obviously they’re allowed just to go out. if they have risk of falls then we do have to accompany them. (care home lead activity coordinator) similarly, at some sites residents who were considered to be ‘at risk’ could only go outdoors if accompanied by a member of staff. this could entail a relatively long wait if staff were busy: some, like [name of resident], will ask a lot. when it’s the weather, as long as it’s not too hot, [resident] likes going around the garden, so we do take him out round there. as long as it’s… the morning shifts are the more busy; so sometimes if he says, like, can i go for a walk around the garden, sometimes we might have to say yeah but we’ll have to do it this afternoon. (extra care housing support worker) some staff and managers suggested that extreme weather often prevented residents from using outdoor spaces: page of working with older people w orking w ith o lder people supporting people, they don't go out, they're fair-weather people and we've not had the best weather. and when it is too hot it's too hot. (extra care housing general manager) in this context, the availability of indoor spaces suitable for nature-based activities was important. at an extra care housing scheme, if the weather was inclement the gardening club took place in a ‘community bungalow’ on site. one care home included a conservatory that could be used and was seen as preferable to other indoor areas, particularly for messy activities. pressures on staff time were identified by several interviewees as a barrier to supporting connections with nature, with one manager stating that the priority was to ensure that residents were safe and well cared for and that if they were short on staff the green dementia care was ‘put on the back burner’. similarly, one extra care housing manager had no dedicated activity staff and a lack of time and funding for care staff to support nature- based activities. both managers saw the use of volunteers as a possible solution to this issue. for some interviewees financial resources were a barrier to providing outdoor facilities such as sensory gardens and vegetable growing areas. finally, it was suggested that the symptoms of dementia could prevent residents from taking up opportunities to go outdoors, particularly in terms of disorientation, reduced mobility and lower confidence: one of our ladies this morning, that i tried to see if she’d like to come out, she said, i used to love the garden. i said, well i know, that’s why i’ve asked you, and said, i can’t do it now. i said, you can, i can bring you out in your wheelchair, you know, we can go potting together, but no. she didn’t want to, you could tell. (care home activities manager) discussion our findings suggest that a wide range of outdoor nature-based activities are available to residents with dementia. these can be broadly divided into two categories: organised activities like gardening clubs and tea parties, and spontaneous activities like walking in the garden. we also identified two broad types of nature-based activity: passive such as sitting in the garden and active such as gardening. a pet farm on the site of one care home was a particularly good example of offering a variety of opportunities for connecting with nature to residents in a range of situations with varying preferences. some differences were found between the two care settings. for example, extra care housing schemes were less likely than care homes to offer structured nature-base activities or those that took place indoors, but they were more likely to allow residents to keep pets. similarly, extra care housing residents were more likely to organise nature-based activities themselves, while in the care homes it was often activity coordinators or other staff who page of working with older people w orking w ith o lder people took on this role. some care home residents, particularly those who lived on the upper floors, those who used wheelchairs and those who were perceived to be at risk, had to ask a member of staff to take them out, which was not always immediately possible. these differences are likely to reflect the distinct nature of the settings, with extra care housing tending to focus more on supporting independence for a population with generally lower care and support needs than those living in care homes. participants identified many positive impacts for residents which they were believed to be linked with nature-based activities including improved mood and communication, greater engagement, increased social interaction, better sleep, decreased medication and fewer falls. contact with animals was reported to be particularly effective in improving mood and reducing agitation. a small number of negative impacts for residents were also identified such as higher levels of anxiety and frustration. several positive effects for staff were also noted including improved morale, greater job satisfaction and reduced sickness. residents living with dementia who took part in research interviews had a wide range of experiences with the natural environment in both their childhood and adult life prior to entering long-term care. for some, connecting with nature appeared to be an important part of their self-identity while others spoke of being relaxed and feeling more freedom when outdoors as compared to indoors. this supplements previous research which has suggested that the natural environment can help people with dementia to be brought “out of themselves” or to “forget about their symptoms” (whear et al, ; mapes et al, ). our findings also identify a phenomenon that might be called ‘unleashing the unexpected‘, whereby people with dementia discover totally unexpected joys and previously unrecognised skills when trying something new outdoors. reasons for not taking part in nature-based activities tended to be personal rather than due to the care setting, such as individual preferences and physical abilities. a range of factors were seen to influence the opportunity for residents to connect with nature including the design and accessibility of outdoor spaces (e.g. circular walks, benches, but not suitable for wheelchair users), the ease with which residents could leave the building (upper floor accommodation makes spontaneous activity difficult), the weather, the availability of staff (for organised activities or when residents were felt to need accompanying or monitoring), provision of suitable indoor spaces, and symptoms of dementia (such as disorientation) as well as personal issues related to risk taking and low confidence). our findings contrast with previous reports that many people living with dementia in accommodation and care settings have limited opportunities to connect with the natural world (e.g. clarke et al., ). it is also important to reflect here on the difference between there being ‘opportunities’ for activity and a wide range of activities being ‘offered’, and the range of individuals in a setting that are regularly engaging in these opportunities and activities. however, this difference may be at least partly due to the self-selecting nature of the survey participants and the fact that the case studies were chosen as examples of good page of working with older people w orking w ith o lder people practice. previously reported organisational concerns about safety and security were not replicated, but the issue of how accessible outdoor spaces are is confirmed. as found by olsson et al. ( ), some residents greatly missed contact with nature and could become frustrated at the limitations of their current situation in this respect. careful planning was also advised, which concurs with the finding of hendriks and colleagues ( ) that good preparation is a crucial factor for successful implementation of nature-based activities, but so was a willingness to be flexible from one day to the next. some extra care housing settings struggled to provide residents living with dementia additional support to connect with nature. this appeared to be because their focus on independence limited the number of organised activities that were available. conclusion and recommendations this paper has added to the limited existing evidence base for the health and wellbeing outcomes of engaging with the natural environment for people living with dementia, specifically in care homes and extra care housing. it supports previous findings for the reported benefits of nature-based activities for people with dementia in terms of physical and mental wellbeing (e.g. whear et al. ). we did not find the same level of restrictions in accessing the natural world that was reported by clarke et al. ( ) and others, but this is perhaps not surprising given that the case study sites were selected as examples of good practice. we also recognise the wide variety of settings and accommodations in which care is provided for people with dementia. the design of these settings, as well as the opportunities for both passive and active connections with nature, is likely to vary significantly from place to place. our findings suggest that a wide range of nature-based activities can be provided in these settings, and that they are associated with a range of emotional, behavioural, physical and social benefits for residents with dementia, as well as job satisfaction for staff. the design and layout of indoor and outdoor spaces appear to play a key role, in addition to empowered staff in enabling or deterring connections with nature. further research could usefully explore the impact of different types of green care on aspects of physical and cognitive function, as well as identifying any longer term physical, social or emotional effects. the findings from this project have informed the development of a set of recommendations for good practice in green dementia care in extra care housing and care homes. these are summarised in figure . figure here page of working with older people w orking w ith o lder people references alcock, i., white, m. p., wheeler, b. w., fleming, l. e., and depledge, m. h. 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( ). the characteristics of residents in extra care housing and care homes in england. health and social care in the community, ( ), - de rui m, toffanello ed, veronese n, zambon s, bolzetta f, et al. ( ) vitamin d deficiency and leisure time activities in the elderly: are all pastimes the same? plos one, ( ). evans, s. ( ). housing with care for older people. in: improving later life: services for older people – what works. age uk, london. mapes, n., milton, s., nicholls, v., williamson, t. ( ). is it nice outside? – consulting people living with dementia and their carers about engaging with the natural environment. natural england commissioned report necr . mcnair, d. ( ). sunlight and daylight. in: gilliard, j. and marshall, j. (eds.), transforming the quality of life for people with dementia through contact with the natural world. fresh air on my face. jessica kingsley publishers, london. rendell, m., and carroll, d. ( ). why don’t we go into the garden? australian journal of dementia care, ( ), – . page of working with older people w orking w ith o lder people robson, j. p., and troutman-jordan, m. l. ( ). back to basics: health and wellness benefits of gardening in older adults. activities, adaptation and aging, , – . whear, r., thompson coon, j., bethel, a., abbott, r., stein, k., and garside, r. ( ). what is the impact of using outdoor spaces such as gardens on the physical and mental well-being of those with dementia? a systematic review of quantitative and qualitative evidence. journal of the american medical directors association, , – . wright, s. d., and wadsworth, a. m. ( ). gray and green revisited: a multidisciplinary perspective of gardens, gardening, and the aging process. journal of aging research. open access article. page of working with older people w orking w ith older people determinants of sucessful green dementia care x mm ( x dpi) page of working with older people wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ beyond point and level systems: moving toward child-centered programming wanda k. mohr, phd, aprn, faan university of medicine and dentistry, new jersey andres martin, md yale university james n. olson, phd university of texas–permian basin andres j. pumariega, md temple university nicole branca, msn, aprn university of medicine and dentistry, new jersey many residential treatment facilities and child inpatient units in the united states have been structured by way of motivational programming such as the point and/or level systems. on the surface, they appear to be a straightforward contingency management tool that is based on social learning theory and operant principles. in this article, the authors argue that the assumptions upon which point and level systems are based do not hold up to close empirical scrutiny or theoretical validity, and that point and level system programming is actually counterproductive with some children, and at times can precipitate dangerous clinical situations, such as seclusion and restraint. in this article, the authors critique point and level system programming and assert that continuing such programming is antithetical to individualized, culturally, and developmentally appropriate treatment, and the authors explore the resistance and barriers to changing traditional ways of “doing things.” finally, the authors describe a different approach to providing treatment that is based on a collaborative problem-solving approach and upon which other successful models of treatment have been based. keywords: residential treatment, milieu, children’s programming, children’s inpatient treatment, collab- orative problem solving traditionally, many residential treatment facilities and child inpatient units in the united states have been structured by way of motivational programming that is known collectively as the point and/or level system. although empirical literature is available that examines token economies, there has been little attention focused on point and level system programming per se as actually imple- mented by staff members in treatment settings. even less attention has focused on the whether the behavioral changes that may be seen during the program’s implementation are maintained across different settings and across time. on the surface, point and level systems seem to be a straight- forward contingency management tool that is based on social learning theory and operant principles. this programming has been challenged in the past on the basis of its lack of utility, efficacy, and long-term effectiveness in changing children’s behavior (mohr & pumariega, ; vanderven, , ). yet such program- ming remains a common way of organizing therapeutic milieu; staff members resist giving up such programming despite the fact that alternate models exist and have been implemented success- fully (greene, ablon, & goring, ; greene, ablon, hassuk, regan, & martin, ; martin, krieg, esposito, stubbe, & cardona, in press). in this article, we offer a criticism of point and level program- ming. in the spirit of critique we argue that the assumptions upon which point and level systems are based do not hold up to serious empirical scrutiny or theoretical validity, ignore individual differ- ences among children, and that point and level system program- ming may be counterproductive. by virtue of not taking into account individual differences and symptoms, it may undermine their progress, and at times can precipitate dangerous clinical situations. we contend that continuing such programming is anti- thetical to providing individualized, culturally, developmentally, and cognitively appropriate treatment and we examine the resis- tance and barriers to changing traditional way of “doing things.” finally, insofar as there have been critiques of point and level systems over the years (mohr & pumariega, ; vanderven, , ), but few alternatives proposed, we describe a different wanda k. mohr, phd, aprn, faan, child adolescent psychiatric advanced practice nursing, university of medicine and dentistry, new jersey, school of nursing; andres martin, md, child adolescent psychi- atry, yale child study center, yale university; james n. olson, phd, department of psychology, university of texas–permian basin; andres j. pumariega, md, department of psychiatry, temple university, and de- partment of psychiatry, the reading hospital and medical center, read- ing, pennsylvania; nicole branca, msn, aprn, university of medicine and dentistry, new jersey, school of nursing. for reprints and correspondence: wanda k. mohr, phd, aprn, faan, child adolescent psychiatric advanced practice nursing, umdnj school of nursing, e. laurel road, stratford, nj . e-mail: mohrwk@umdnj.edu american journal of orthopsychiatry © american psychological association , vol. , no. , – - / /$ . doi: . /a model to providing treatment that is based on a collaborative problem solving approach. this model has been introduced in a number of facilities, replacing existing point and level systems with a person-centered approach that promotes collaboration and a therapeutic alliance (martin et al., in press; regan, curtin, & vorderer, ). in this article, the use of the word children is meant to include both children and adolescents, and the discussion is focused only on this population. point and level systems point and level systems are presented by their proponents as behavioral management tools. they are designed and found in a variety of settings, including educational, juvenile justice, inpatient psychiatric, and residential treatment (mohr & pumariega, ; vanderven, smith & farrell, ; , ). for the purposes of the present article, we consider only inpatient psychiatric and residential treatment settings, because the variables operational in educational and correctional settings pose a different layer of complexity that is beyond the scope of this discussion. these include the fact that inmates in juvenile correctional facilities are adjudicated to these institutions and that the institutions’ main focus is not on therapeutics; further educational facilities do not have the same kinds of staff or the same therapeutic mission as inpatient or residential treatment settings. in settings that employ point and level systems to manage the therapeutic milieu, chil- dren’s behavior is monitored continually and calculated by staff members periodically. most often points are assigned at periodic intervals, such as hourly or upon completion of an activity. a certain number of points correspond with certain levels. the low- est levels are those at which the fewest privileges are available to children; when levels are raised, privileges are correspondingly increased. often point and level systems are explicated in detailed policy and procedure manuals, and manuals are given to children and their parents upon admission to a unit. the intent of such systems is to document children’s progress through a therapeutic program. youngsters achieve more indepen- dence and greater privileges as they demonstrate increased behav- ioral control and appropriate socialization. ideally, children are to learn appropriate behavior through clearly defined behavioral ex- pectations and rewards, liberties, and consequences linked to those expectations. specific criteria are documented for advancement to the next level where children achieve more desirable privileges. while not all point and level programming operates in the same way, in most instances, children are admitted on the lowest level, which has the fewest number of desirable contingencies and ac- tivities. if they are unable to meet the expectations of the system, they remain on the lowest level, sometimes indefinitely. where children have advanced to the next level, staff members can “drop” their level or “freeze” them at a level in the event that they exhibit what staff consider to be inappropriate behavior. descriptions of point and level systems can be found throughout the literature for at least the past years (jones, downing, latkowski, ferre, & mcmahon, ; mastopieri, jenne, & scruggs, ; pazaratz, ; rosenstock & levy, ). jimmy’s case an illustration involving one of the author’s charges provides an example of how a point and level system was implemented by the staff of an acute inpatient psychiatric unit and how non therapeutic, and counterproductive such a structure can become. twelve-year-old jimmy was admitted to child unit of a psychi- atric hospital for impulsive, violent, and assaultive behavior since the age of . he was diagnosed with attention-deficit/hyperactivity disorder (adhd), mixed type, at age and has been on a variety of medications, all of which “stopped working after awhile” ac- cording to his mother. he shows marked impairments reading, writing, and articulating his thoughts. the unit to which he is admitted houses children ages ranging from to . upon admission, jimmy was placed on a level i status. level i status is considered a “safety” level, on which he will be checked every minutes and receive no privileges, such as computer or television time. according to the unit handbook, there are three levels. level ii can be obtained by a child after being hospitalized hours and displaying “good” behavior and showing active participation in therapeutic activities. a child must also fill out a series of ques- tions and write a brief life story to obtain level ii privileges. level ii allows the child to go off the unit for meals and recreational activities with staff. level iii is reserved for children who have been hospitalized over hours and have showed marked “lead- ership” on the unit. this designation is determined by their peers and the staff on each shift, who evaluate and “sign off” on patient behavior. level iii is the highest level, allowing the child special phone privileges and a later bedtime. according to the unit handbook, the child’s behavior determines their level and unwanted changes in their behavior can result in their level being dropped. furthermore, while it must be a treat- ment team decision to increase a child’s level, any staff may drop the child’s level for behaviors they think warrant a drop. while he was a patient, jimmy was the youngest child on the unit and was bullied by and rejected by his older peers. after a day of hospitalization, jimmy participated in a group meeting and stated that his goal was to “become a level ii.” because jimmy was unable to write a coherent life story, which is required to move forward in the levels, he told it to the nurse verbally. he found it difficult to focus and became easily frustrated at his inability to communicate. the nurse decided that jimmy was not showing “adequate motivation and behavior” and could not move forward to level ii. in frustration, jimmy threw a tantrum and punched two holes in the unit wall. unable to process his frustration verbally, he cursed at the nurse who informed him: “now you will not get your level for at least a week.” jimmy had an uneventful days and moved up a level, as he managed to successfully tell his life story to another nurse. jimmy attended daily group on the fourth day, normally a -minute affair. on this day it ran overtime, and while he was able to maintain control for minutes, he began to fidget and was unable to remain seated. when reprimanded, he stomped off angrily. his inability to stay in group resulted in his forfeiting his level ii. jimmy remained hospitalized for six days, receiving his level ii again and quickly losing it for similar episodes of frustration. jimmy’s case is by no means unique and it happens with regularity in psychiatric facilities that employ this kind of pro- gramming. although no empirical study has been conducted to point and level systems substantiate this claim, the authors have many decades of clinical experience attesting to children’s frustration with point and level systems. jimmy suffered frustration and seemed to be punished for the very symptoms which brought him to a treatment facility. in the following sections, we discuss some of the drawbacks of structuring a children’s or adolescent milieu in this fashion. the unclear history of point and level systems it is not altogether clear when or how point and levels kind of programming became the “sine que non” of children’s program- ming and milieu structure. in examining the literature it seems historically to have its origins in the token economy. introduced into mental health settings over four decades ago, the token econ- omy was a programming concept based on the operant condition- ing principles developed by b. f. skinner ( ). it was designed to remediate the problems of seriously mentally ill patients who were residing in large numbers in state and department of veter- ans affairs institutions. as conceived, the full range of patients’ self-care, social, and work behaviors could be modified by sys- tematic, preplanned use of antecedents and reinforcers. how such programming found its way into today’s child inpatient and resi- dential treatment units and transmuted into the present point and level systems in these facilities is unclear. it may have been appropriated from school settings, where point and level sys- tems— often referred to as token economy systems—are often the basis of special education programs. although there are many early reports of the successful imple- mentation of token economy programs in various settings, some scholars suggest that these reports do not constitute a sufficient empirical basis upon which to base milieu programming for groups of individuals (mcmonagle & sultana, . despite their roots in experimental psychology, token economies have not been demon- strated to be of proven lasting benefit when examined critically. mcmonagle and sultana ( ) undertook a meta-analysis to review the effects of token economies with a serious and persistent mentally ill population. searching a number of large databases (psyclit, biological abstracts, cinahl, embase among oth- ers), they sought to review the efficacy of token economy pro- gramming as compared to standard care by reviewing randomized (type i) studies. they found only three studies that met the criteria of a type i study. they found no usable data on target or nontarget behavior, but found one study supporting the token economy for “change in mental status” improvement on patient negative symp- toms at three months. they concluded that despite token economy having its genesis in experimental psychology, there was insuffi- cient evidence to support effectiveness or generalizability, and in their implications for practice section recommended the program- ming to be employed only when there was no alternative, or within the context of a randomized clinical trial. while this meta analysis was not specifically focused on the kinds of child populations we see in inpatient, educational, and residential treatment settings, its value was in illustrating the lack of type i studies in this area. behavioral procedures and pitfalls point and levels systems may appear to be sound contingency management treatment systems for children and adolescents, based on their early links to sound applied behavior analysis and the application of learning procedures to treatment (pazaratz, ). however, even sound principles can be omitted or unintentionally misapplied in treatment settings. as donat and mckeegan ( ) have concluded from their study of direct care staff, knowledge of behavioral principles, especially that of nurses was poor as mea- sured by an inventory of behavioral knowledge, and donat ( ) concluded from his more recent study of behavioral procedures that in clinical treatment settings such procedures are not utilized therapeutically in clinical treatment settings, citing obstacles such as lack of knowledge or education in learning or behavior princi- ples as impediments to implementation of effective behavioral interventions. others’ observational studies have confirmed this to be true of mental health settings (burdett & milne, ; ni- emeier, ), as well as residential treatment settings (tompkins- rosenblatt & vanderven, ; vanderven, , ). in the subsections that follow, we discuss some reasons why point and level systems may be counterproductive, non therapeutic, and may result in unintended consequences. reinforcing when, how and for what? in point and level sys- tems, children earn points for appropriately adaptive or prosocial behaviors, and this may be a good thing. but children may also earn points by unspecified behaviors of omission when they do not engage in inappropriate behaviors. reinforcing someone for not displaying some unwanted behavior (e.g., aggression to one’s peers) during some interval of time, may mean that the child is being unintentionally reinforced for other inappropriate behavior, such as mumbling aggressive utterances beneath his or her breath, or for some other more subtle behavior (greenspoon & olson, ). group programming may not target individual deficits and excesses of behavior and teach each child the host of adaptive skills needed to deal effectively with problems and their associated environments in everyday life. in group programming, any spec- ification of “desired behaviors” may be vague and passive in nature. that is, children are rewarded for behaviors conforming to the group norm and overall compliance, regardless of whether compliance is appropriate to a context in which a noncompliant response would be a healthier response. an example of this might be to accept passively accept a staff member’s taunting or provo- cation because to protest such behavior would mean a loss in privileges. another disadvantages of point and levels systems is that be- cause reinforcers should be presented immediately after a desired response for maximum effectiveness (martin & pear, ), such systems actually delay reinforcement. because of the way much programming is structured, points are awarded on the hour or even longer, after many specified or unspecified behaviors may have taken place. finally, there is the issue of consistency. treatment facilities are staffed by individuals who work on a rotating shift basis possibly resulting in inconsistency and lapses in communication about children. worse yet are the situations in which settings employ temporary technicians or nurses from a pool on the basis of their census; as census goes down staff is “called off” and when census goes up, they are called in to work. this creates a situation where, not only is there inconsistency of staff, there are multiple individ- uals—with multiple values, frustration tolerance, varied back- grounds and educations—who may not know their charges and mohr, martin, olson, pumariega, and branca their unique problems. this may result in uneven and uninformed treatment and implementation of the program. focus on the negative. treatment foci in residential or inpa- tient units are so heavily concentrated on behavior problems as targets of attention, that staff may not learn to specify and observe what the child is doing that is appropriate, or desired. clinicians determine the presenting symptom(s) or “what is wrong”, and focus on eliminating the problem. these symptoms are not man- ifestations of the same ontogenic or environmental risk factors across the child population. focusing on negative behavior keeps children and clinician attention on negative behaviors, rather than teaching and demonstrating the value of positive behaviors and working to strengthen them. thus, the complexity of the child’s dynamics is lost in the struggle to control behaviors or trying to teach the child to “behave.” point and level systems as group treatment too often fail to identify and specify individual child’s positive behaviors that are desired, within what contexts such behavior should happen, and in what ways these behaviors should be strengthened (greenspoon, ). several problems emerge when framing treatment on “no,” “don’t,” “stop,” and “not” in rules, or demands, or behavior contracts. when caregivers focus on behaviors that they “don’t like” or “don’t want a child to do,” they can unwittingly expand the range of environments in which avoidance responses may occur (greenspoon, ). consequently, undesired behaviors can “go underground.” going underground with behaviors can lead so some interesting but counterproductive effects. for example, points may be awarded when undesired behaviors occur but are not noticed by staff members, such as when a bullying child pinches a frightened peer behind staff members’ backs, instead of tackling and pummeling him. the child may earn his points for that half hour because they did not act out, where in reality the pinching was reinforced, thereby teaching the child deviousness. even in settings where attempts are made to individualize and specify positive individual behaviors (pazaratz, ), chaotic group setting, overwhelmed staff, and entrenched punitive cultures may miss opportunities to reinforce positive behaviors when they occur, thereby effectively extinguishing them. punitive. point and level systems, for all their appearance of “fairness” and objectivity, are punitive. a punisher is a conse- quence of behavior that decreases the likelihood that the behavior will recur (estes, ). spiegler and guevremont ( ) catego- rize punitive consequences to include extinction, “time-out” from positive reinforcement, “response cost,” and physically aversive consequences. response cost refers to the removal of a reinforcer or some specified amount of reinforcer following undesired be- havior; level systems are designed around this type of punitive consequence. for example, if children are discovered engaging in overt undesired behavior, they are quickly “fined” points, “frozen” and possibly demoted to a lower level. these staff actions may be seen as unfair and provocative by children and result in unwanted “acting-out behaviors.” someone has to “fine,” “freeze,” or “demote” the child. this is an example of a conditioned punisher. examples of conditioned punishers are threats, fines, failing grades, and removal of privi- leges (sundel & sundel, ). these may be accompanied by frowns, reprimands, or scolding that may have some association with punitive events in the past (azrin & holz, ). conditioned punishers probably receive the least attention in discussions of punitive consequences and the phenomenon may not even be considered by the designers of point-level systems. ideally, when a response cost takes place, staff members should have been instructed to do so in as neutral a manner as possible, saying as few words as possible about the undesired behavior. they should specify what behavior should have been exhibited. such neutrally is not the norm in staff-child interactions in which a response cost is often followed by a litany about the unwanted behavior. thus, staff members who should serve as sources of reinforcement as facilitators, and as confidants to children, may inadvertently take on aversive qualities. moreover, inappropriate behaviors elicit attention for the child, but the teaching component gets lost in the absence of an accom- panying statement about how the child should behave or cope in the presence of a triggering stimulus for the unwanted behavior. when the caregiver’s verbal or nonverbal behaviors express dis- approval, they decrease the potency of the staff members serving as a source of reinforcement. they are put in the position of being those who “catch” the child being inappropriate, issue the response cost (taking away points or decreasing their level) and may be- come, by association, a conditioned punisher (baum, ). complicating this punitive picture further is the ambiguity sur- rounding children’s behaviors that are being punished. too often children are punished for their symptoms or for normal human expressions or reactions. point and level milieus do not account for the fact that some behaviors in children, such as those who are institutionalized because of problems with impulsivity, affect reg- ulation, and behavioral dyscontrol often reflect expressions of frustration, efforts to demonstrate autonomy, a desire for engage- ment, or some other meaningful interpersonal transaction. more- over, a child’s resistance may actually be a desirable behavior if it results from what a child perceives as an assault on their compe- tence or self worth. in other words, the meaning of behavior is lost because its presence and underlying motivation is not evaluated. furthermore, the capacities of children to exhibit certain behav- iors is not taken into account. severe trauma or neglect during childhood can have a devastating effect on the development of the brain and its functions— emotional, cognitive, behavioral, and physiological. the sequelae of childhood trauma and neglect may present with a variety of different signs and symptoms, including violence, dissociative phenomena, irritability, and emotional labil- ity among others (perry, ). they vary as a result of a host of variables, both ontological and ecological. thus, for example, if a child is admitted to a facility at the ground level, on a level , and even the expectations of this level., or progressing to the next, exceed the emotional or cognitive capacity of that child, he or she may remain at this level for weeks or even months. any expression of frustration or disgust, a sullen aside or profanity in response to this state of affairs, are grounds for punishment or grounds for remaining at level and not moving forward in the program. we illustrated this situation in our case study of jimmy. unnecessarily provocative. inpatient, residential, and juvenile justice facilities house a large percentage of children with disrup- tive behavior disorders. these children may often be as rigid in their impulsivity and low frustration tolerance as an uncompro- mising level system. an unbending adherence to the assigning, or, taking away of points can result in conflict between children and staff. this is particularly disturbing when such staff actions reflect an inability to recognize that children s lack the capacity to point and level systems perform certain behaviors, introducing yet another layer of frus- tration for these children. the corollary of this situation is when “rules” are not applied consistently, but rather capriciously across different staff and on different shifts. this leads to conflicts over “fairness.” given sufficient time, the milieu may become coercive rather than therapeutic, with staff and their charges engaging in an ever-increasing aggression-coercion cycle (goren, singh, & best, ). the end result is that children are often on the receiving end of more coercive punishment, such as seclusion or restraint result- ing from unproductive arguments over the assignment of points. inconsistent with individualized treatment. children who are patients in hospitals or residents of residential treatment facilities are not a homogeneous group. they have different behavioral deficits or excesses, capacities, and histories. programming that is designed for a group is bound to fail because it does not take into account differences among the group members. such programs fly in the face of individual treatment. individual treatment should address any patients’ or residents’, or clients’ unique needs and challenges, and should be dynamic and responsive to status changes over time. it is axiomatic that development proceeds at varying rates from child to child, as well as unevenly within different areas of each child’s functioning. individual variation has at least two dimen- sions: the variability around the normative course of development, and the uniqueness of each person as an individual. harmful early experiences can have both cumulative and delaying effects on individual children’s development. likewise, mental illnesses can delay children in certain domains of functioning. recognition of these individual variations requires that treatment and clinician’s interactions with those children in their care be as individualized as possible. developmentally appropriate practice encourages the use of varied individual strategies to meet the unique needs of children, and that children not be considered as part of a chronological age group who are expected to perform to a predetermined norm. point and level systems do not allow for adaptation to individual cog- nitive or developmental variation (tompkins-rosenblatt & vanderven, ; vanderven, , ). points are assigned for specific behaviors that may be beyond the capacity of all members of a heterogeneous population. the thorny problem of generalization. point and level systems are artificial constructions and, because they are applied to a group of individuals, the criteria for advancement to higher levels are the same for everyone, and the privileges associated with each level are the same. thus, points used as reinforcers, as well as many of the backup reinforcers, are vastly different from those in the natural environment, and the contexts in which the reinforcers are delivered are different. consequently, level systems have no rela- tion to the environment to which the child will return, raising the issue of generalization, or transfer of training, otherwise known as ecological validity. if compliance is achieved or behaviors changed, these tend to be temporary (kazdin, ; martin & pear, ; spiegler & guevremont, ). the problem of generalization is due not only to the artificiality of the inpatient or residential setting. in addition, problems asso- ciated with generalization may also be a function of pro forma treatment planning. individual treatment plans are dynamic docu- ments which should specify not only the contingencies in the inpatient setting, but just as important, they need to focus increas- ingly on the future, the “postinpatient” treatment plan. evans ( ) has suggested that “assets,” or external sources of support be assessed. this would include the extent to which family, friends, and so forth provide support and consistency, as well as the contexts in which the support may be provided. although follow-up should be an integral part of treatment, the reality is that there is little incentive for facilities to maintain ongoing monitor- ing of children once they are discharged. indeed, literature on long-term outcomes of institutionalization is sorely lacking. what little literature is available points to outcomes being dependent on the quality of community follow-up (lundy & pumariega, ; pumariega, ). restricting therapeutics inpatient units and residential treatment facilities that are struc- tured by level systems purport to assist children in acquiring adaptive coping skills and more effective ways for them to deal with their problems in a secure physical setting. in addition to the various psychotherapies, such settings provide activities that allow children to practice these coping skills, such as going on outings, engaging in school, occupational, aesthetic, and recreational activ- ities. wolfensberger ( ) refers to the provision of such activi- ties as normalization, an approach that replicates the wider culture. these activities provide contexts for learning and testing more adaptive ways of functioning in a social setting. children can practice skills and receive feedback from staff members. however, such activities are viewed as “privileges” within many level sys- tems, and these activities are restricted when levels are dropped, or when a child fails to achieve a higher level. this robs children of valuable opportunities to develop adaptive coping, correct mal- adaptive behavior, and acquire interpersonal management skills in a milieu. in addition, because of the serious underfunding of such facilities in today’s managed care environment, such activities are often meager and in short supply (pumariega, ). self-governance and locus of control a therapeutic milieu is a planned treatment environment that should be flexible and normalizing, as well as geared toward helping children develop self-responsibility and healthy interde- pendence with others. the milieu should be planned to support and guide children toward greater responsibility and more robust locus of control within their individual capacities. such objectives are inconsistent with a life space wherein staff members are the arbiters of awarding points and determining levels, no matter how much they might insist that the individual child is responsible for his or her level. staffing realities despite the simplistic way in which behavioral procedures are often presented and transmitted to staff members, (e.g., reinforcers are for “good” behavior and unacceptable behavior should receive negative consequences) the application of principles of learning to human problems is very complex. most behavior analysts would concede that a few hours, or days, of training in behavior tech- niques are insufficient to adequately prepare caregivers to manage, or monitor such a program. learning what is a “natural conse- mohr, martin, olson, pumariega, and branca quence” for behavior is neither simple, nor straightforward. the distinction between a natural consequence (a natural extension of behavior) and an imposed consequence (punishment) is important because natural consequences, which are valued by a child, can be powerful motivators (pellitteri, stern, shelton, & muller- ackerman, ). yet staff members with very limited exposure to principles of learning are asked to manage point and levels systems. there is a dearth of information about how the staff should react to children in their care, especially when they t display undesired behaviors. most caregivers are poorly versed in the application of the principles of learning to behavior problems. milne ( ) asserted that mental health nurses’ education had little ecological validation, a situation that is as true today as it was over years ago (mohr, ). many decades of research has suggested that staff members inadequately reinforce positive behavior and inter- mittently reinforce unwanted behavior (donat & mckeegan, ; gelfand, gelfand, & dobson, ; niemeier, ). moreover, today’s managed care environment facilities may employ poorly educated and trained frontline staff with troubled backgrounds to work with these youth, without adequate screening, leading to serious adverse consequences (pumariega, ). niemeier ( ) studied a psychiatric inpatient unit and concluded that patients themselves, rather than nurses, were often the best behavioral technicians with respect to their fellow patients, and donat ( ) reported that staff are inconsistent with their approaches to behav- ioral interventions, while boudewyns, fry, and nightingale ( ) observed that unit environments actually resulted in increased behavioral problems. these observations underscore the need for thorough training, continued training, and feedback as to caregiver effectiveness (i.e., reinforcement for thoughtful and desirable staff behavior). cultural validity of point and level systems the increasingly diverse population of children and youth in the united states (especially from non-european backgrounds) re- quires what is now commonly termed culturally competent treat- ment (pumariega, rogers, & rothe, ). this presumes that the value systems, beliefs, and behavioral norms of diverse popula- tions are taken into account when designing treatment plans and applying various therapeutic modalities to diverse children and youth. in culturally competent treatment, equal treatment is not necessarily equivalent treatment. even treatment approaches that are evidence-based with mainstream european-origin populations cannot be presumed to be effective with populations of different backgrounds. therapies and treatments should be at least adapted to the unique needs of diverse children and youth and not assumed to be generalizable to individuals who are not from the dominant culture. however, given that there is little empirical research that generic level systems are efficacious at all, these cannot be as- sumed to be effective for diverse youth. although there are main- stream interventions now demonstrated to be effective with diverse youth (pumariega et al., ), some researchers have also found that some treatments and their adaptations may actually be harmful to minority group members (chambless & williams, ; gibbs & huang, ; telles et al., ). studies conducted with native american and hispanic youth demonstrated that interventions which address the multiple cultural and social contexts of the ethnic youth and families involved in treatment can have a positive impact on important therapy outcomes, such as reduced drug use. whereas those which do not, fail to engage such youth in a culturally informed manner, leads to poor outcomes, treatment failure, and cynicism (e.g., lafromboise & bigfoot, ; mal- gady, rogler, & costantino, ). there is also good reason to consider that behavioral interven- tions need to be conceptualized from totally different perspectives with diverse youth. skinner himself ( ) indicated that cultural values and customs are developed under unique sets of contingen- cies determined by the environmental context within which a society or culture develops. in addition, tooby and cosmides ( ), using the theory of evolutionary psychology, hypothesized that culture is the product of evolved psychological mechanisms situated and hard-wired into the brain of individuals living in social groups. they pointed out that human cultures and social behaviors are highly variable because they are generated by an intricate contingent set of functional programs that process infor- mation from the world around them, including intentional and unintentional information from other human beings within their groups/communities. additionally, evolutionary psychology sug- gests that adaptive behaviors elicited by ecologically specific contingencies in diverse cultural settings become somewhat hard- wired over the centuries, and lead individuals to behave within fairly consistent patterns. however, when they are exposed to different contingencies within different cultural contexts, such behaviors could then be maladaptive, and possibly elicit negative reinforcement and become quite difficult to extinguish. as a result, because level systems are designed within the context of particular cultural milieus, they may be ineffective for people from cultural origins different form the ones where the level system originated, and may fail to extinguish incongruent behaviors or even inadver- tently reinforce them. moreover, other investigators hypothesize that acculturation changes the health behaviors of ethnic minority individuals through operant behavioral mechanisms (landrine & klonoff, ). because diverse children and youth are often in the midst of the process of acculturation (pumariega et al., ), this process of adaptation adds an even greater layer of complexity to the task of behavioral analysis and management. therefore, individualized behavioral interventions based on culturally competent behavioral analysis that takes into account different contingencies, reinforc- ers, and culturally based patterns and meanings of behavioral response is essential for culturally diverse youth. moving away from a point and level system: an illustration despite their many limitations and questionable record of suc- cess with children, point and level systems are widely imple- mented programs. if not already in existence, they can work their way into the daily operations of inpatient and residential treatment settings. once they “take root” and become part of a unit’s explicit operating procedures and covert working culture, they can be very hard to replace with other models of care. what point and level system programming may lack by way of efficacy they often make up by way of providing staff a solid set of rules by which to manage a unit. point and level programs also provide staff with the language and interventions that help shape the unit culture. indi- point and level systems table implementation of a new model of care: anticipating and addressing recurring themes recurring theme brief description case study highlights . leadership a conscious decision on the part of both administrative and clinical leaders that it is a worthy goal for which the organization is willing to commit its resources -held town hall meetings of all unit staff to identify limitations to status quo standard of care. -approached institutional leadership to support buy-in of programmatic change, as well as to alert about possible dissension. -unit leadership held weekly meetings to identify and address challenges of implementation. -financial resources identified through philanthropic engagement. . orientation and training training and new employee orientation should introduce staff to the agency’s treatment philosophy, organizational culture, program structure, and relevant policies and procedures -identification and hiring of outside consultants with expertise in implementation of collaborative problem solving (cps). -videoconferencing (vc) equipment installed to permit on-site training of an “outside” model of care. -schedules managed in order to allow staff to attend training on a consistent basis. -initial -hour didactic session repeated so as to include all shifts. -vc-based training, . hours long each, held twice weekly during six month implementation phase. -followed up by occasional “booster sessions” and by regular group- and peer-supervision based on the new model of care. . staffing staffing ensures that adequate numbers of qualified employees are available to implement the organization’s mission -education and support of staff during transition. -hiring of new staff and attrition of select few members unable to adjust to new model of care. -supervision during and after formal training period permitting more organic espousing of the new model. -staff as “carriers of the culture” the most potent vehicle for change–or for stagnation. -provided a safe and regular forum in which to address difficulties and challenges in model implementation (notably concerns over patient and staff safety). . environmental factors actual physical factors, such as square footage, ventilation, temperature, lighting, noise, and odors, as well as the way that staff and patients experience the environment. -point and level overt reminders (such as star charts) eliminated from open, shared areas. -expansion of outside play area as part of a capital campaign to improve facilities. -elimination of rugs, change to brighter paints and materials; engagement of volunteer artists to decorate space. -elimination of all but the most critical restraint and seclusion equipment, and their “camouflage” under “child friendly” covers. -elimination of outdated and unsafe equipment (such as sinks in individual rooms). (table continues) mohr, martin, olson, pumariega, and branca table (continued ) recurring theme brief description case study highlights . programmatic structure the purposeful set of activities carried out within a specified context in order to achieve desired outcomes. programs consist of routines, rituals, and rules which in a behavioral health setting focus on creating a supportive and therapeutic milieu. -less emphasis on unit-wide, behaviorally- contingent activities, with a move toward more individually tailored plans informed by children’s relative strengths and weaknesses. -five pathways (social, executive, cognitive, language and affective) provide a template to better understand children’s individual needs. -emphasis on identification of trigger events precipitating maladaptive behaviors, especially violence and aggression. -the same programmatic approach informs all activities in the unit, not only the explicitly “clinical” ones (p. ex. school work). -programmatic enrichment through recreational and occupational activities, both through core dedicated staff, as well as through volunteer services (pet therapy, clown care unit, music, yoga, etc). . timely and responsive treatment planning treatment planning is individualized, involves the patient and relevant stakeholders, and is responsive to changes in behavior and to progress in treatment. -the new program of care informs and guides daily unit rounds and norm- compliant paperwork, rather than becoming an “add-on.” -pathways and triggers are iteratively refined during daily multidisciplinary rounds. -outside stakeholders invited to attend and contribute to treatment planning exchanges. -additional meetings scheduled in response to specific challenges. . processing after the event (debriefing) helps the patient reconnect with staff, peers, and the milieu; provides an opportunity to reflect on the behaviors that lead to the intervention, and helps identify coping strategies and behaviors that can be used in the future. -efforts are made to process events such as seclusion or restraint use after the acute incident has resolved. -processing can be just as helpful to the child to reconnect with the milieu, as well as for staff to learn from the event and try new strategies in the future. -processing in the immediate aftermath of an event (e.g. within a few hours) remains an elusive goal given the high acuity and many demands that typically surround such events. . communication and consumer involvement emphasizes the need for greater inclusion of consumers and their families in the treatment process, with specific emphasis on self-determination -the involvement of family and relevant stakeholders is a core aspect of treatment. -involvement of families can be especially challenging for those living at a distance, or for children under state custody or for those undergoing transition in placement. -involvement of patient and family “alumni” has helped identify needs (e.g. playground or school) and develop long term strategies to address them. . systems evaluation and quality improvement data are analyzed and used to evaluate the effectiveness of system-wide efforts to achieve the organization’s goals regarding the reduction and use of restrictive interventions. -data on seclusion and restraint use, and on injuries to children and staff are collected as part of routine care, and analyzed on a regular basis. -five-year trend data (described in martin et al, in press) have served as a launching point to refine, expand and replicate the model to other similar units. note. adapted from david colton ( ). point and level systems vidually appropriate and therapeutic interventions may be in direct conflict with those deemed appropriate by the direct child care staff. moreover, as vanderven ( , ) opines these systems serve as a concrete way for staff to believe that they are controlling their charges and thereby maintaining a semblance of order and comfort. to complicate this further, organizations are usually under a variety of pressures deriving from economic, performance, and safety concerns, some of which spring directly from social and political forces that exist in the larger environment, such as the cost of educating the staff and other changes that may be financially unattractive to administrators of such programs (bloom, ). units may become what morgan ( ) referred to as “psychic prisons,” of their own making with deviation or change seen as a threat to the status quo. attempts at change may result in disagree- able backlash that may be inevitable, but can be seen as part of the change process itself. in an effort to describe the practical challenges and hurdles to overcome in moving away from a point and level system, we examine an example of the experience of a -bed, school-aged inpatient psychiatric unit as it implemented new model of child- centered clinical care based on the collaborative problem solving (cps; greene, ; greene & ablon, ). the cps model has been implemented with successful and promising outcomes in a limited number of clinical settings greene et al., ; greene et al., ; martin, ; regan et al., ). the clinical setting was a -bed psychiatric inpatient unit for school-aged children. the unit is part of the yale child study center, a facility that treats mentally ill children and their families. the yale child study center is a psychiatric inpatient facility for school-aged children that is part of the yale-new haven chil- dren’s hospital in new haven, connecticut. the inpatient service has a bed capacity of children; during the -year interval of the study, the unit had an average of admissions per year, % of whom were boys; a bed occupancy of %, and a length of stay of days, demographic characteristics that did not substantially change during the implementation of the new model of care. the unit takes a multidisciplinary approach to intervention and treat- ment, and is staffed by physicians, nurses, social workers, psy- chologists, and mental health technicians. children’s diagnoses included adjustment disorders, anxiety disorders, bipolar disorders, depressive disorders, hyperactivity, psychosis, and other mental health disorders. the decision to eliminate the existing point and level system programming came out of a concern for what was seen as staff-patient conflict concerning matters not germane to therapeutics, and the numbers of seclusion and restraint procedures that resulted from some of these conflicts. the cps model had been successfully implemented at the cambridge hospital (regan et al., ) and it was thought that replacing the level and point system with a more child-centered model might reduce the number of conflicts and be more therapeutic. a comprehensive description of the cps model and how it is implemented in clinical settings is beyond the scope of this article. in short, the cps model is posited on the idea that children’s capacities for complying with caregivers directives or expectations are unique to each child and if caregivers demands exceed these capacities, children responses deviate from the responses expected by those caregivers. these deviations may increase frustration levels for both parties, and may result in response biases on the part of both (greene et al., ). the cps model assumes that children “do well if they can.” it aims at helping challenging children and their adult caretakers learn to resolve conflicts, dis- putes, and disagreements in a collaborative, mutually satisfactory way. as described by greene and colleagues (greene & ablon, ; greene et al., ), the approach consists of three steps. the first is to identify and understand a child’s concern about a given issue and to reassure the child that the issue will not be resolved through coercion. the second is identifying the adult caregiver’s perspective on the same issue or problem. the third is to invite the child to brainstorm possible solutions with the goal being to mutually agree upon a realistic course of action. greene originally conceptualized his approach to treatment in in his book entitled the explosive child. he proposed that behaviors that were seen as challenging resulted from deficits in certain domains of functioning, specifically the cognitive skills to solve problems and the ability to be flexible and to tolerate frustration. the behaviors manifested as inflexibility by children in response to everyday situations. he recommended that such in- flexible children should be understood and approached in the same way as that one might plan and intervene with other kinds of learning disabilities. whereas traditional approaches to residential treatment when point and level systems are employed represent a reactive post hoc style of intervention, greene’s model is proactive. in contrast to a one size fits all approach of point and level systems, the cps approach is geared to intervene at an individual level taking into account each child’s unique needs and capacity to learn. instead of creating an adversarial atmosphere between staff and patient by awarding or taking away of points or dropping levels, the individ- ual problem solving approach is collaborative and promotes ther- apeutic alliances. most importantly, it teaches patients valuable problem solving skills that they can employ outside of the insti- tutional setting. although the change in the model of care in this case was not primarily aimed at eliminating restrictive interventions, substantial reductions ( . %) in the frequency and duration of restraint and seclusion ensued as a welcome byproduct (martin et al., in press). the report based on this naturalistic experience was not able to disentangle the extent to which the introduction of cps versus the elimination of the preexisting point and level system contributed most to these reductions. we used the checklist for assessing your organization’s readi- ness for reducing seclusion and restraint (colton, ) as a conceptual framework for implementing the cps model. the checklist is based on nine recurring themes identified in the literature and provided a systematic approach for identifying fac- tors that influenced the reduction of seclusion and restraint and for assessing the level of progress as the inpatient unit moved toward a level-free environment and a new model of care. in keeping with the themes the checklist was developed to address, it provided a template to examine change and to support the evolution of the unit’s values, mission, and practices. the cps model was success- fully implemented even thought the process was lengthy, staff were at time resistive to change, and staff attrition occurred in part due to the change process. the checklist also provides a visual outline of the implementation and activities that took place during the move from a level system to a collaborative model. as can be seen from table , the transformation required ongoing, strong leadership and modifications to programming, and mohr, martin, olson, pumariega, and branca physical plant, education; indeed it involved a complete change of culture. data collection is ongoing at the yale child study center, but at the two year mark, the number of restraint and seclusion episodes remains low (similar to the rate reported above). in addition, injury rates associated with restraint use remains low and staff turnover is at an all-time low for the center. patients and staff voice satisfaction with the changes implemented on the unit. at this writing, various facilities, in connecticut and out of state, have become intrigued with our sustained positive outcomes and are seeking to emulate our program. conclusion the present discussion has focused on revealing the inadequacy, if not the actual counterproductive and sometimes destructive effects, of the point and level system of structuring psychiatric milieus. these destructive effects can include its punitive nature, which may inadvertently duplicate the same experiences that were so toxic to many of the children in inpatient and residential facilities and a host of other unintended sequelae described in this article. it also illustrated an alternative model that has been im- plemented successfully. this model respects the integrity of both staff members and the children in their care. some may argue that from a practical standpoint the cps model cannot be implemented widely, in that many settings do not have the financial resources that may be available to a harvard or yale affiliated setting. this is a straw man argument, especially when considering recent literature. in looking at the cost of coercive interventions, such as seclusion and restraint alone, mental health settings spend thousands of dollars associated with staff time, turnover, sick time and other costs related to these measures. lebel and goldstein ( ) showed that restraint reduction programming in massachusetts resulted in a significant reduction in cost to the state ( % over one year). if, as the emerging outcomes of imple- menting the cps model alone result in a decrease in the number of restraint episodes, its implementation may be a cost-effective investment for institutions. morrison ( ) concluded that the prevailing (and preferred) ideology in inpatient psychiatry is constructed on an authority model of care, and that these settings are coercive, regimented, overstructured, inflexible, and focused more on ease of implemen- tation and security than therapeutics. we referred to the research demonstrating that staff is not conversant with behavioral princi- ples. perhaps some of morrison’s research reflects such lack of content in the educational curricula, with the last refuge of the uninformed being coercion. these educational shortcomings must be recognized and remediated in the implementation of any model of care and treatment approach. treatment approaches in mental health, should be expected to meet the same minimum standards as those in other areas of health care (lundy & pumariega, ). one of those standards is dem- onstrated effectiveness. that is, the treatment should be shown to yield the result for which it was designed—and that result should be sustained over time. it should also be as free as possible from unintended consequences. this is what is now commonly referred to as evidence based treatment (for a historical review, see bond, salyers, rollins, rapp, & zipple, ). a consideration of the point and level system of milieu programming, does not meet that standard, and the unintended consequences are many. in the pres- ence of alternative approaches, such as the cps model, and others such as bloom’s sanctuary model for children’s residential treat- ment ( ) the time has come to replace outdated and counter- productive approaches to unit structure and programming, and replace them with more patient-centered care. references azrin, n. h., & holz, w. c. 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( ). the principle of normalization in human ser- vices. toronto, canada: national institute of mental retardation. received january , revision received january , accepted january , ! mohr, martin, olson, pumariega, and branca wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ healing environment in paediatric wards: from research to practice procedia - social and behavioral sciences ( ) – - © the authors. published by elsevier ltd. open access under cc by-nc-nd license. selection and peer-review under responsibility of centre for environment-behaviour studies (ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia. doi: . /j.sbspro. . . sciencedirect aice-bs london asia pacific international conference on environment-behaviour studies university of westminster, london, uk, - september "from research to practice" healing environment in paediatric wards: from research to practice roslinda ghazali*, mohamed yusoff abbas, nehzat jalalkamali centre for environment-behaviour studies universiti teknologi mara, shah alam , malaysia abstract best practices was created to helps designers in the creation of more conducive healing environment in paediatric wards. this is benefited to designers in creating spaces not only base on their assumptions. the evaluation focuses the newer paediatric wards in the klang valley area. case study is the strategy involved paediatric wards. personal on-site observation and evaluation, questionnaires, and documentations are the selected methods. this paper revealed that best practices suggested were not fully implemented. therefore, it is best for all bodies related to should be made aware of their obligations for a better quality environment in paediatric wards. © published by elsevier ltd. selection and peer-review under responsibility of the centre for environment- behaviour studies (ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia. keywords: best practices; healing environment; case study . introduction designing and established the hospital building by creation of more conducive healing environment in paediatric wards had been cautioned to designers in their design process, so as not to base on their assumptions about human behaviour. this is to avoid recurring design mistakes so as to reduce the length of stay (los) amongst patients. interesting framework exploring the science of healing has medical re * corresponding author. tel.: + - - - ; fax: + - - - . e-mail address: lindakeruing@gmail.com. available online at www.sciencedirect.com © the authors. published by elsevier ltd. open access under cc by-nc-nd license. selection and peer-review under responsibility of centre for environment-behaviour studies (ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia. http://creativecommons.org/licenses/by-nc-nd/ . / http://creativecommons.org/licenses/by-nc-nd/ . / roslinda ghazali et al. / procedia - social and behavioral sciences ( ) – (ananth, , p. ). the wholesome approach involved both the inner and outer environment as shown in figure . the framework somehow is a good approach for designers to consider in order to creates a better healing environment. in s, the malaysian health ministry highlighted the guidelines for creating hospitals for a more child-friendly, cheerful and safe hospital (mathews, ). however has the malaysian health ministry been successful implemented as such guidelines? what are the obstacles faced if any, towards the positive implementation? the aim of the present study is to evaluate the healing environment created in newer paediatric wards (built after ), in the klang valley area, as per best practices suggested by research findings very much earlier. the main objective of the study being to verify the common belief that positive suggestions for a more conducive healing environment have not been heeded, and seemed to fall onto deaf ears of designers / building providers, etc. . literature review this section focuses literatures reviewed relevant to the study, and best practices. as mentioned earlier, the ohe would be the best approach for designers to consider in the creation of healing environment. the ohe emphasized both the inner and the outer environment that consists of seven elements - developing healing intention, experiencing personal wholeness, cultivating healing relationship, practicing healthy lifestyles, applying collaborative medicine, creating healing organization and building healing spaces (bhs) as shown in figure . however, researcher has modified the ohe framework base on their architectural background. the proposed theoretical framework also consist of ambient, safety, ergonomic and therapies which concerned the interior and exterior as shown in figure . fig. . the optimal healing environment (ohe) framework source: sita ananth ( ) roslinda ghazali et al. / procedia - social and behavioral sciences ( ) – fig. . modified framework based on ohe source: sita ananth ( ) . . exterior and interior architecture a healing garden benefited to patients, families and staffs as reported by several studies. a post- occupancy evaluation (poe) was done by whitehouse, et. al. ( ) revealed that healing garden is a place to reducing stress, restoring hope and energy, and increasing consumer satisfaction. based on the findings and recommendations, they highlighted elements that can be used as a guide for the future planning, design, building, and subsequent evaluation of garden to promote a better use of the garden. for examples, the healthcare provider should educated their staffs as to the purpose of the garden, who it is for, and how to incorporate the use of the garden into patient and family care and how families are benefiting from the garden is essential. the healthcare provider should ensure the colorful brochures with pictures and information about the garden to be included in the patient information book in hospital rooms. the information as to helps the families and patients know about the garden and are able to have access to it and clearly maps on how to get there. the elevators and other high-traffic areas could be a place where installing posters about the garden. they also suggested that the healthcare provider should assigning volunteers and hospital interns to bring patients and families to visit the garden would increase its use and accessibility. meanwhile, fouts and gabay ( ) opined that patient environment should designed to convey wellness and comfort in all dimensions especially to mind, body and spirit. progressively, the research is demonstrating that environmental factors such as natural light, pleasant views, artwork, and even use of certain colors. they stressed that the potential to transform a highly stressful and frightening emotion of the patients encounter into the imparts of powerful healing and therapeutic effect. implemented effectively, healing-focused and evidence-based design can potentially o cope with the emotional and physical aspects of the disease and its treatment and, ultimately, the environment increase patient satisfaction. in relation to safety anonymous ( ) concurred that children dislike to be hospitalised and parents wondering what could happen there. however, anonymous offered tips to parents in making their youngster's hospital visit safe and successful while staying in the yale-new haven children's hospital. they provides free information for architecture exterior interior garden playground artwor sound natural lighting artificial lighting ambience lighting artwork colour furniture arrangement outdoor space for privacy safety ergonomic therapies art therapy music therapy aromatherapy pet therapy roslinda ghazali et al. / procedia - social and behavioral sciences ( ) – both the parents and their children on proper hospital manners called "pediatric patient safety: keeping children safe in the hospital. they provides the information for parents on getting ready for their hospital visit, communicating with caregivers, making sure the child has proper identification in the hospital, preparing for surgery and emergency visits, controlling infections, and reducing medical errors. in the healing environments of healthcare, eichner ( ) stressed particularly important to take care of those who care for the ill and injured, such as nurses and other staffs. healthcare provider should provides them with a healthy and safe workplace. eichner adding the healthcare provider could gather financial benefits by incorporating ergonomic principles in the planning of healthcare environments, whether during new construction or in existing facilities undergoing renovation. he also highlighted that conditions in the workplace. hence, he suggested that ergonomics should considered the older, disabled, or pregnant workers, to perform their duties and remain on the job for longer periods of time by provides facilities that could can make healthcare environments more user-friendly for patients and visitors as well. in terms of alternative therapies in the paediatric wards, effectiveness of such therapy such as art therapy, music therapy, aromatherapy and pet therapy positively contributed the healing process. mallay ( ), stewart ( ), vappa ( ) and morrison ( ) found that it was simple and cost effective interventions, which reduced depression and helped patient heal faster. . research design . . strategy the strategy for the research design was case studies that involved paediatric wards located in the klang valley area. overall, patients and staffs were involved in this research as shown in table . the newer hospital was the benchmark for the selection of the hospitals and it built after in non- urban area. table . hospitals involved based on the year built and number of respondent . . methodology the methodology for data collection involved questionnaires, evaluation, personal on-site observation and documentations. . . . aedet evolution and aspect evaluation toolkit evaluation toolkit (ds estates and facilities, a &b). the previous study using the same evaluation and had explained in detailed in previous conferences as was published in the proceedings. hence, only the summaries to described the research in this paper. the aedet (achieving excellence design evaluation toolkit) evolution was used to evaluate the physical environment of the paediatric wards. hospitals year built area respondent(staff) respondent (patients) . sd non-urban . ag non-urban . sb non-urban total respondent roslinda ghazali et al. / procedia - social and behavioral sciences ( ) – there are three main areas consists of impact, build quality and functionality. the researcher filled up the form based on their personal on-site observation during their visit, while photographs were taken and documented to visualize the ambience of the paediatric settings. the using of weightage for the best score is to express a level of virtually complete agreement while the poorest score is used to express a level of virtually no agreement. the aspect (a staff and patient environment calibration toolkit) was distributed to respondents involved users of the paediatric wards, which included patients / carers, nurses and other staffs. overall, patients and nurses involved as tabulated in table . the same weightage for the best score is to express a level of virtually complete agreement while the poorest score is used to express a level of virtually no agreement. in- record departments based on data for the year . the data used as the basis for analysis and consisted . . limitations and delimitations the present study having limitation especially on getting approval from the ministry of health (moh) and the national medical research institute (nmri). confidentiality of in-patients data obtained were delayed which had to be screened by the administrative officer before being released. while, some of the questionnaire responses returned were incompleted, and limited samples as the setting located in just the delimitations for the study involved paediatric patients of ages between - years old and delimited to bedded paediatric wards in relation to current practice. . findings and discussion the aim of this paper to evaluate the healing environment created in newer paediatric wards that built in year , and , as per best practices suggested by research findings very much earlier. . . in-patient data analysis the in-patient data shown that majority of male patient at the age years old mostly warded. it seemed patient will discharge from the ward within - days once the patient recovered from their illness. mostly the malays were the majority who stayed in the ward. while diagnosis distribution highly related to asthmatic, bronchopneumonia, tonsillitis, allergic asthma, respiratory infection and pneumonia. second highly diagnosis distribution related to diarrhea and gastroenteritis, dengue fever and other convulsions. thirdly diagnosis distribution (type of sickness) related to fractured, superficial injuries and wound concussion as shown n figure . . . the aedet (achieving excellence design evaluation toolkit) evolution the aedet analysis done by researcher during their site visit . the analysis based on researcher observation and filling up the aedet form. the analysis reviewed that all hospital score average and shown positive improvement. for examples all hospitals score average for character & innovation, use, access, space and urban & social integration for sb(nu)- . the rest score above average for especially for the form & materials, staff & patient environment as shown in figure . it seemed that designers aware on new design and using update materials to enhance the characters of the space as well as the building, however lacking in terms of engaged the space and consideration on accessibility. roslinda ghazali et al. / procedia - social and behavioral sciences ( ) – fig. . in-patient data in fig. . the aedet analysis roslinda ghazali et al. / procedia - social and behavioral sciences ( ) – . . the aspect (a staff and patient environment calibration toolkit) the aspect analysis done to evaluate the users satisfaction level. the questionnaires distributed to staffs and patients/carers. it seemed that all hospitals score average for both staff and patients satisfactory level as shown in figure and figure . thus, shows that designers did not aware of users requirement and fulfill user satisfaction. perhaps designer should consider the detail of guideline as mentioned in the literature review before they start any hospital project and design process. fig. . the aspect analysis - collapse data for staff satisfaction scoring fig. . the aspect analysis - collapse data for patient satisfaction scoring . . observation and photograph documentation this section are the series of photograph taken during researcher site visit. the purpose is to observed the trend of newer hospital focuses at selected area, such as nurse station, the wards, playroom, main roslinda ghazali et al. / procedia - social and behavioral sciences ( ) – entrance, corridor & restroom. overall, the outcome of the aedet analysis reflected the physical setting as shown in figure , figure , figure and figure . the used of new materials, update design and taking consideration of user needs creates better environment and new ambience in the hospital.. for examples, designer creates nurse station with lower table and become user-friendly especially to paediatric as shown in figure . in relation to the wards, all hospitals offer a better environment with suitable bed for paediatric patients, as well as a comfort sofa for parents who stayed overnight accompany their child. natural lighting gives positive impact to illness child and benefited in healing process. each bed had their own privacy space to change their cloth as shown in figure . colours play an important role where it creates cheerful ambience of the paediatric wards. cartoons, under water themes or jungle themes creates the environment more colourful and its helps children to ease their anxiety and trauma. figure shows the corridor in the paediatric wards. each wards has their own theme and different approach to invites children. a small room with different approach such as colourful mural on the wall creates the room more lively, cheerfull and pleasant to children benefited to them by soothing their anxiety and trauma. toys and books helps the playroom more attractive and useful to children as shown in figure . fig. . nurse station with user-friendly concept fig. . paediatric wards with natural lighting roslinda ghazali et al. / procedia - social and behavioral sciences ( ) – fig. . colourful corridor creates cheerful ambience fig. . playroom with attractive approach . conclusion and recommendations the outcome between the aedet and aspect analysis shows the different opinion from researcher and feedback from respondents about the physical environment and satisfaction by the users. researcher analysed the aedet data and suggest designers to improve on character & innovation, use and access. privacy. ( ) viewing outside and around the building. ( ) the need for patients dealing with the natural, nature and outdoor world. ( ) patients needs comfort and they want control those level. ( ) understandable healthcare buildings by the staff, patients and visitors who use them. ( ) interior appearance of healthcare buildings, and; ( ) facilities for the users in the healthcare buildings. the overall data analysed both the aedet and aspect indicated improvement, however those elements mentioned above did not achieved above average. perhaps new building should score more and shows impressive improvement to support the healing environment and benefited for all. therefore, researcher revealed that the best practices suggested by earlier studies were not fully implemented in the newer wards involved. hence, the common belief that positive recommendations from research findings were not implemented into practice was verified. major obstacles for the implementation were identified. to overcome the obstacles, it is suggested that related professional bodies, local authorities, roslinda ghazali et al. / procedia - social and behavioral sciences ( ) – building providers, etc. should be made aware of their obligations for a better quality of life for users in paediatric wards. special note this paper was developed further from the paper published by the same authors in natural environment in paediatric wards: status and implications, procedia - social and behavioral sciences, , , . newly built public paediatric wards increase length of stay (los), procedia - social and behavioral sciences, , , . quality physical environment in paediatric wards: , procedia - social and behavioral sciences, , , - , elsevier, available online april . assessment of healing environment in paediatric wards, procedia - social and behavioral sciences, , , - , elsevier, available online april . physical environment: the major determinant towards the creation of a healing environment?, procedia - social and behavioral sciences, , , - , elsevier, available online december . healing environment of pediatric wards, procedia - social and behavioral sciences, , , - , elsevier, available online september . earlier findings were revealed in the proceedings of aice-bs , grand margherita hotel, kuching, malaysia, - december , the proceedings of ace-bs , riverside majestic hotel, kuching, malaysia, - july , while the pilot study in the proceedings of ncebs , shah alam, malaysia, - november . references ananth, s. ( ). healing environments: the next natural step. explore, ( ), . anonymous ( ). tips for kids' safe hospital stays. usa today. farmingdale: , , . eichner, j. m. ( ). ergonomic principles in the design of healthcare environments. herman miller for healthcare. - . fouts, m. & gabay, d. ( ). healing through evidence-based design. oncology issues, - . fouts, m. & gabay, d. ( ). healing through evidence-based design. oncology issues, - . mallay, j.n. ( ). art therapy, an effective outreach intervention with traumatized children with suspected acquired brain injury. arts in psychotherapy , ( ), - . mathews, e. ( ). klh to be hospital for women and children, star, june . morrison, m. l. ( ). health benefits of animal-assisted interventions. complementary health practice review, ( ), - . stewart, k. ( ). pattern-a model for evaluating trauma in nicu -music therapy. music and medicine, l( ), , - . vapaa,a.g. ( ). healing gardens: creating places for restoration, meditation, and sanctuary. what are the defining characteristics that make a healing garden? by ma virginia polytechnic institute and state university, college of architecture and urban studies. onsumer satisfaction. journal of environmental psychology, , - . (microsoft word - js- th\ se - version soutenance.doc) université de montréal l’utilisation des services de centre de jour par les personnes âgées qui présentent des incapacités par jacinthe savard département d’administration de la santé faculté de médecine thèse présentée à la faculté des études supérieures en vue de l’obtention du grade de docteur en santé publique option organisation des soins de santé octobre © jacinthe savard, université de montréal faculté des études supérieures cette thèse intitulée : l’utilisation des services de centre de jour par les personnes âgées qui présentent des incapacités présentée par : jacinthe savard a été évaluée par un jury composé des personnes suivantes : régis blais, président-rapporteur nicole leduc, directeur de recherche paule lebel, co-directeur de recherche danièle roberge, membre du jury nicole dubuc, examinateur externe annie rochette, représentant du doyen de la fes iii résumé contexte : les centres de jour offrent des interventions de groupe à des personnes âgées qui présentent des incapacités, dans le but de favoriser leur maintien à domicile. des études récentes tendent à démontrer qu’une utilisation régulière du service serait nécessaire pour induire des effets bénéfiques. objectifs : cette recherche visait à documenter l’utilisation des centres de jour par des personnes âgées qui présentent des incapacités. elle comportait trois principaux objectifs : ) caractériser les utilisateurs de centre de jour et ce qui les distingue des non- utilisateurs et analyser les déterminants de l’utilisation du centre de jour. ) explorer l’adéquation entre les activités offertes par les centres de jour et les caractéristiques d’autonomie et de santé des utilisateurs. ) définir les facteurs associés à la régularité de la participation. méthodes : cette recherche s’appuie sur une analyse secondaire de données recueillies auprès de personnes âgées qui ont participé au projet de démonstration sipa (services intégrés pour personnes âgées) implanté dans deux clsc de la région de montréal. l’utilisation du centre de jour a été documentée pendant une période de six mois, auprès des cinq centres de jour existant sur ce même territoire. des informations sur le fonctionnement des centres de jour ont été obtenues par des entrevues et des rencontres de groupe auprès de coordonnateurs de ces centres. les données ont été analysées à l’aide de statistiques descriptives, d’analyses en regroupement et d’analyses de régression logistique et multiple. résultats : les résultats sont présentés dans trois articles, soit un pour chacun des objectifs. article : la proportion d’utilisateurs de centre de jour est de , % (ic , : , à , %). les facteurs suivants augmentent la probabilité d’utiliser le centre de jour: être plus jeune (rc : , ; ic , : , à , ); ne pas avoir une éducation universitaire (rc : , ; ic , : , à , ); recevoir l’aide du clsc pour les activités de vie quotidienne plus d’une fois par semaine (rc : , et , pour aide de deux à cinq fois par iv semaine et aide de six à sept fois par semaine respectivement; ic , : , à , et , à , ); faire partie du bassin de desserte d’un centre de jour dont les coûts sont moins élevés (rc : , ; ic , : , à , pour chaque augmentation de $); et pour les hommes seulement, avoir déjà subi un accident vasculaire cérébral et présenter davantage d’incapacités fonctionnelles (interaction entre le sexe et la présence d’un avc : rc : , ; ic , : , à , ; interaction entre le sexe et les capacités fonctionnelles mesurées à l’oars: rc : , ; ic , : , à , ). de plus, on observe une plus grande probabilité d’utiliser le centre de jour chez les personnes qui cohabitent avec une personne de soutien. toutefois, cette relation ne s’observe que chez les personnes nées au canada (interaction entre la cohabitation avec la personne de soutien et le pays de naissance : rc : , ; ic , : , à , ). article : des analyses en regroupement ont permis de distinguer quatre profils de participants ayant des caractéristiques similaires : ) les personnes fragilisées par un âge avancé et un grand nombre de problèmes de santé; ) les participants plus jeunes et plus autonomes que la moyenne, qui semblent des utilisateurs précoces; ) les personnes qui présentent des incapacités d’origine cognitive; et ) celles qui présentent des incapacités d’origine motrice. les activités de groupe des centres de jour ont été regroupées en huit catégories : exercices physiques; groupe spécifique pour un diagnostic ou un problème fonctionnel commun; activités fonctionnelles; stimulation cognitive; activités musicales ou de réminiscence; sports et jeux physiques; intégration sociale; prévention et promotion de la santé. les activités les plus fréquentes sont les exercices physiques et les activités d’intégration sociale auxquelles ont participé plus de % des utilisateurs de centre de jour, et ce en moyenne à respectivement % (± %) et % (± %) de leurs présences au centre de jour. les autres catégories d’activités rejoignent de % à % des participants, et ce en moyenne à % (± %) à % (± %) de leurs présences. la participation aux diverses catégories d’activités a été étudiée pour chaque profil d’utilisateurs et comparée aux activités recommandées pour divers types de clientèle. on observe une concordance partielle entre les activités offertes et les besoins des utilisateurs. cette concordance apparaît plus grande pour les participants qui présentent des problèmes de santé physique ou des incapacités d’origine motrice et plus faible pour ceux qui présentent des symptômes dépressifs ou des atteintes cognitives. v article : les participants au centre de jour y sont inscrits en moyenne à raison de , (± , ) jours par semaine mais sont réellement présents à , % des jours attendus. les facteurs suivants sont associés à une participation plus régulière au centre de jour en termes de taux de présences réelles / présences attendues: ne pas avoir travaillé dans le domaine de la santé (b : , ; ic , :, à , ); recevoir de l’aide du clsc les jours de fréquentation du centre de jour (b : , ; ic , : , à , ); être inscrit pour la journée plutôt que la demi-journée (b : , : ic , : , à , ); lors de ses présences au centre de jour, avoir une moins grande proportion d’activités de prévention et promotion de la santé (b : , ; ic , : , à , ); et enfin, avoir un aidant qui présente un fardeau moins élevé pour les personnes avec une atteinte cognitive et un fardeau plus élevé pour les personnes sans atteinte cognitive (interaction entre la présence d’atteinte cognitive et le fardeau de l’aidant : b : -, ; ic , : -, à -, ). conclusion : conformément à leur mission, les centres de jour rejoignent une bonne proportion des personnes âgées qui présentent des incapacités. cette étude fait ressortir les caractéristiques des personnes les plus susceptibles d’y participer. elle suggère la nécessité de revoir la planification des activités pour assurer une offre de services qui tienne davantage compte des besoins des participants, en particulier de ceux qui présentent des atteintes cognitives et des symptômes de dépression. elle démontre aussi que l’intensité d’exposition au service semble faible, ce qui soulève la question des seuils d’exposition nécessaires pour induire des effets favorables sur le maintien à domicile et sur la qualité de vie de la clientèle cible. mots-clés : centre de jour, personnes âgées, soutien à domicile, activités thérapeutiques, utilisation des services vi abstract background: adult day centers (adc) offer group-based interventions to older, community-dwelling individuals with functional limitations, with the aim of helping them remain in the community for as long as possible. recent studies seem to indicate that regular use is needed for positive effects on participants and their caregivers. objectives: the purpose of this study was to document the use of adcs by seniors with functional limitations. there were three main objectives: ) to identify the characteristics of adc users versus non-users and to identify the determinants of use. ) to explore how well adc program activities matched the different needs of participants with various health and functional characteristics profile. ) to examine the factors related to regularity of adc attendance. methods: this study was based on a secondary analysis of data collected from seniors participating in the services intégrés pour personnes âgées (sipa) demonstration project implemented in two clscs in montreal. adc use data were obtained for a six month period, from the five adcs serving the same catchment area. to better understand the adc program characteristics, individual interviews and focus groups were carried out with adc coordinators. data were analysed with descriptive statistics, cluster analysis, and logistic and multiple regression analysis. results: the results are presented in three articles, one for each main objective. article : the proportion of adc users was . % (ci . : . – . %). the following factors increased the probability of adc use: being younger (or: . ; ci . : . – . ); not having a university degree (or: . ; ci . : . – . ); receiving help from the clsc for daily living activities more than once a week (or: . and . for help two to five times per week and six to seven times per week respectively; ci . : . - . and . - . ); being in the catchment population of an adc with a lower daily fee (or: . ; ci . : vii . - . for each $ fee increase); and for men only, having had a stroke or presenting with more functional incapacities (interaction between gender and presence of a stroke: or: . ; ci . : . - . ; interaction between gender and functional capacity as measured by oars: or: . ; ci . : . - . ). in addition, the probability of adc use was higher among individuals who live with the person identified as their caregiver. however, this association was found only among persons born in canada (interaction between whether they lived with caregiver and country of birth: or: . ; ci . : . - . ). article : four different participant profile groups were identified using cluster analysis: ) frail seniors of advanced age who had a large number of health problems; ) individuals who were younger and more independent than the average participants who appeared early users of adc; ) individuals with functional impairment related to cognitive problems; and ) those with movement disorders which affected their independence. classification of program activities by a panel of experts distinguished eight categories of activities: physical exercise; groups for those with common diagnoses or functional problems; functional activities; cognitive stimulation; music or reminiscence activities; sports and physical games; social skills and interaction; disease prevention and health promotion activities. the most frequent activities were physical exercise, and social skills and interaction activities in which more of % of adc users participated, respectively at a mean of % (± %) and % (± %) of their attendances at the adc program. other categories of activities were provided to to % of participants, and at a mean of % (± %) to % (± %) of their adc attendances. participation in these activities categories was examined for each profile group, and compared to the recommended activities for such client group. partial correspondence was found between program activities and participants’ needs. concordance seemed higher for individuals with physical health problems or mobility impairments and weaker for those presenting with depressive symptoms or cognitive impairments. article : adc participants were registered with their program for a mean of . (± . ) days per week, but were actually present . % of the scheduled days. more regular attendance (higher proportion of scheduled days attended) was associated with: a previous profession of adc participant or spouse in a sector other than health care (b: . ; ci . : . − . ); the individual receiving formal help for viii activities of daily living on days of expected adc participation (b: . ; ci . : . − . ); enrolment for the whole day rather than half a day (b: . : ci . : . − . ); lower participation rates in prevention and health promotion activities (b: . ; ci . : . − . ); and among participants with cognitive impairment, lower caregiver burden, and among persons without cognitive impairment, higher caregiver burden (interaction between cognitive impairment and caregiver burden: b: -. ; ci . : -. − -. ). conclusion: in keeping with their mission, adult day centres attract a large portion of seniors with disabilities. this study has identified the characteristics of the clientele who are most likely to participate in centre activities. results also suggest a need to review the planning of activity program components to ensure that the services offered best respond to client needs, particularly clients presenting with depressive symptoms or cognitive impairments. it has also demonstrated that the intensity of exposure to this service tends to be low overall, which raises the question of the level of exposure needed to have a positive influence on the quality of life and ability to remain in the community among this population. keywords: adult day care, adult day services, elderly, frail seniors, community long- term care, therapeutic activities, service use. ix table des matières page résumé............................................................................................................................................... iii abstract.............................................................................................................................................. vi liste des tableaux............................................................................................................................... xi liste des figures...............................................................................................................................xiii principales abréviations utilisées ..................................................................................................... xiv remerciements................................................................................................................................ xvii chapitre : introduction....................................................................................................................... contexte de la thèse......................................................................................................................... chapitre : recension des écrits.......................................................................................................... les centres de jour........................................................................................................................... l’efficacité des centres de jour...................................................................................................... l’utilisation des centres de jour..................................................................................................... déterminants de l’utilisation..................................................................................................... conclusion de la recension des écrits............................................................................................ chapitre :cadre conceptuel et objectifs de l’étude .......................................................................... cadres théoriques utilisés dans les études récentes sur l’utilisation des centres de jour............... cadre conceptuel retenu ................................................................................................................ déterminants de l’utilisation du centre de jour ......................................................................... limites relatives à la disponibilité des données........................................................................ phénomènes d’utilisation .......................................................................................................... les activités offertes en centre de jour...................................................................................... les objectifs de cette recherche..................................................................................................... adaptation du cadre théorique global aux objectifs de recherche relatifs aux déterminants de l’utilisation............................................................................................................................ chapitre : méthodes de recherche.................................................................................................... stratégies de recherche.................................................................................................................. population à l’étude....................................................................................................................... période d’observation.................................................................................................................... méthodes de collectes de données................................................................................................. définition des variables................................................................................................................. analyse des données...................................................................................................................... considérations éthiques................................................................................................................. x page chapitre :résultats........................................................................................................................... articles........................................................................................................................................ article : l’utilisation des services de centre de jour par les personnes âgées qui présentent des incapacités....................................................................................................... article : les activités de groupe des centres de jour pour personnes âgées correspondent-elles aux besoins des différents profils de participants? ................................. article : determinants of adult day center attendance among older adults with functional limitations.............................................................................................................. résultats complémentaires.......................................................................................................... déterminants du contact avec le centre de jour: interaction entre le sexe et les facteurs de besoin...................................................................................................................................... déterminants du contact avec le centre de jour: les facteurs de besoin des personnes de soutien..................................................................................................................................... régularité de participation pour divers profils de participants............................................... chapitre : discussion générale des résultats.................................................................................. Éléments mis en lumière dans chacun des trois volets de l’étude............................................... qui sont les utilisateurs de centre de jour? ............................................................................. À quels types d’activités participent les personnes âgées lors de leur présence en centre de jour? ................................................................................................................................... l’utilisation du centre de jour est-elle régulière? ................................................................... parmi les utilisateurs de centres de jour, quels sont ceux qui le font avec le plus de régularité? ............................................................................................................................... forces et limites de ce projet de doctorat.................................................................................... recommandations pour les centres de jour................................................................................. pistes de recherche pour le futur ................................................................................................. chapitre : conclusion.................................................................................................................... références ....................................................................................................................................... annexe i : article rédigé pour répondre aux exigences de l’examen de synthèse : caregiver satisfaction with support services: influence of different types of services ......................................i- annexe ii : variables étudiées dans les principales recherches présentées à la recension des écrits ................................................................................................................................................ ii- annexe iii : guide d’entrevue : entrevue individuelle avec les coordonnateurs des cinq centres de jour à l’étude.............................................................................................................................. iii- annexe iv : curriculum vitae.........................................................................................................iv- xi liste des tableaux page recension des écrits tableau i : classifications des centres de jour............................................................................... tableau ii : activités en centre de jour : adapté du cadre de référence de l’association des centres d’accueil du québec ( ).......................................................................... tableau iii : caractéristiques des études recensées pour identifier les déterminants de l’utilisation des centres de jour.................................................................................. tableau iiia : études des déterminants de l’utilisation des centres de jour pour une clientèle générale.............................................................. tableau iiib : études des déterminants de l’utilisation des centres de jour pour une clientèle atteinte de démence............................................ tableau iiic : études des déterminants de l’utilisation de services de répit et autres services connexes.................................................................. tableau iiic : études des déterminants de l’utilisation de services de répit et autres services connexes (suite)....................................................... tableau iiid : études descriptives sur les raisons qui motivent ou limitent l’utilisation de ces services.............................................................. tableau iiie : études des déterminants de l’utilisation des services à domicile..... méthodes de recherche tableau iv : description des variables .......................................................................................... tableau v : qualité des instruments de mesure............................................................................ résultats article : tableau : facteurs prédisposants ou caractéristiques sociales des personnes âgées............... tableau : facteurs de besoin ou état de santé des personnes âgées ........................................ tableau : facteurs de capacité de nature organisationnelle .................................................... tableau : régression logistique .............................................................................................. tableau : ratios de cote ajustés pour pays de naissance et lien avec la personne de soutien..................................................................................................................... tableau : ratios de cote ajustés selon l’âge, le sexe, le nombre de problèmes de santé physique, la présence d’avc et les capacités fonctionnelles ................................. xii page article : tableau : caractéristiques des participants.............................................................................. tableau : différences entre les caractéristiques des membres des groupes formés par les analyses en regroupement........................................................................................ tableau : activités en centre de jour, selon leurs buts ............................................................ tableau : activités recommandées en centre de jour pour les divers sous-programmes (acaq, ) et rangs de priorité établis par le groupe d’experts......................... tableau : activités au centre de jour pour l’ensemble des participants, puis pour les quatre profils de participants.................................................................................... tableau : correspondance entre l’exposition aux diverses activités pour les membres du groupe (personnes fragiles) et les activités recommandées.................................. tableau : correspondance entre l’exposition aux diverses activités pour les membres du groupe (incapacités d’origine cognitive) et les activités recommandées.............. tableau : correspondance entre l’exposition aux diverses activités pour les membres du groupe (incapacités d’origine motrice) et les activités recommandées................. article : table : classification of adc group activities.................................................................... table : characteristics of the sample: predisposing characteristics..................................... table : characteristics of the sample: need factors............................................................. table : aspects of service delivery...................................................................................... table : number of adc attendances during a period of weeks, presented by frequency of registration.......................................................................................... table : multiple linear regression of level of adc attendance on predisposing and enabling factors, and aspects of service delivery..................................................... résultats complémentaires: tableau vi : régression linéaire simple entre le contact avec le centre de jour et des variables de la personne de soutien.......................................................................... tableau vii : répartition des absences lors des jours de centre de jour prévus ............................ tableau viii : régularité de participation pour chacun des quatre groupes formés par les analyses en regroupement........................................................................................ tableau ix : régularité de participation des personnes qui ont des atteintes cognitives ............. discussion: tableau x : recommandations pour les centres de jour ............................................................. xiii liste des figures page recension des écrits figure : cheminement d’une référence au centre de jour............................................................ figure : déterminants de l’utilisation du centre de jour ou des services de répit recensés dans les écrits.................................................................................................................. cadre conceptuel et objectifs de l'étude figure : facteurs qui influencent l’utilisation du centre de jour.................................................. méthodes de recherche figure : participants inclus à chacune des étapes de cette étude sur les centres de jour.............. résultats article : figure : facteurs qui influencent l’utilisation du centre de jour................................................ figure : relation entre l’utilisation du centre de jour et les capacités fonctionnelles................ article : figure : deux modèles d’horaire d’activités en cj et lien avec le registre des activités ........... article : figure : factors influencing regularity of adc attendance....................................................... résultats complémentaires: figure : interaction entre sexe et présence d’un avc............................................................... figure : interaction entre sexe et capacités fonctionnelles......................................................... figure : interaction : âge, sexe et problèmes de santé................................................................ figure : contact avec le centre de jour et capacités fonctionnelles de la personne de soutien.. figure : contact avec le centre de jour et durée de l’aide par la personne de soutien ............... figure : contact avec le centre de jour et fardeau de la personne de soutien ............................ figure : participation au centre de jour : présences réelles par semaine.................................... figure : régularité de la participation en centre de jour, en pourcentage des journées prévues.......................................................................................................................... xiv principales abréviations utilisées ± : Écart-type acaq : association des centres d’accueil du québec adc : adult day center adrlsss : agence de développement des réseaux locaux de services de santé et de services sociaux * addtc : alzheimer disease diagnostic and treatment center program anova : analyse de variance asss agence de la santé et des services sociaux avc : accident vasculaire cérébral avd : activité de vie domestique avq : activité de vie quotidienne brdrs : blessed-roth dementia rating scale cj : centre de jour clsc : centre local de services communautaires csss : centre de santé et de services sociaux edg : Échelle de dépression gériatrique epese established populations for epidemiological studies of the elderly etc: Équivalent temps complet hmo : health maintenance organization hta : haute tension artérielle ic . : intervalle de confiance à % irsc : instituts de recherche en santé du canada xv jedi : jonction et diffusion informatique (base de données sur les clients, les présences et les activités en centre de jour) mmse : mini-mental state evaluation oars: older american resources and services pa : personne(s) âgée(s) ps : personne(s) de soutien ramq : régie de l’assurance-maladie du québec rc : ratio de cote sco : syndrome cérébral organique sipa : services intégrés pour les personnes âgées smaf : système de mesure de l’autonomie fonctionnelle spmsq short portable mental status questionnaire _________________________ * ce sigle et ce nom sont utilisés dans l’article . cette entité se nomme maintenant agence de la santé et des services sociaux, terme utilisé dans les autres sections de la thèse. xvi À françois, à mes parents et à mes collègues de l’École des sciences de la réadaptation de l’université d’ottawa qui n’ont jamais cessé de m’encourager tout au long de ce travail xvii remerciements un travail de longue haleine comme celui-ci a été possible grâce à la collaboration de nombreuses personnes et organismes. je veux d’abord remercier la société alzheimer du canada, le groupe de recherche solidage (financé par les irsc), la fondation canadienne d’ergothérapie, la faculté de médecine et la faculté des études supérieures de l’université de montréal, pour le soutien financier reçu tout au cours de mes études doctorales et de la rédaction de la présente thèse. cette étude utilise des données du projet sipa, financé par le fonds d’adaptation des services de santé de santé canada, la fondation canadienne de recherche sur les services de santé et le ministère de la santé et des services sociaux du québec. ma gratitude va aussi aux trois principaux chercheurs de l’équipe sipa, françois béland, howard bergman et paule lebel, pour m’avoir permis d’utiliser ces données, de même qu’à luc dallaire et john fletcher, coordonnateurs de recherche du projet sipa, pour leur aide précieuse relative à la gestion et à la transmission des données. je ne saurais trop dire ma vive reconnaissance à anne-marie boivin, christian-paul gaudet, mélanie léonard, manon pouliot et tina tenenbaum, coordonnateurs des centres de jour à l’étude pour avoir partagé des informations sur le fonctionnement de leur centre de jour, ainsi qu’à jacinthe auger, lucie bernier, christian-paul gaudet, françoise hébert, jacinthe labbé, thérèse lafontaine, odette descarries et tina tenenbaum qui ont participé aux différentes rencontres qui m’ont permis d’établir une classification des activités en centre de jour et de valider les premiers résultats obtenus auprès des intervenants du milieu. mes remerciements les plus chaleureux vont à mes deux directrices, paule lebel et nicole leduc, pour le temps qu’elles m’ont consacré, leurs judicieux conseils, leur soutien indéfectible et leurs encouragements constants. je suis privilégiée d’avoir travaillé avec elles. chapitre : introduction comme la plupart des pays industrialisés, le québec est engagé dans un processus de vieillissement de sa population. selon le scénario le plus probable, la proportion de personnes âgées passera de % en à , % en . de plus, on observe un vieillissement de la population âgée. en effet, l’accroissement des ans et plus sera beaucoup plus important que celui des - ans. le nombre des ans et plus pourrait passer de à durant cette période et leur proportion dans la population totale pourrait grimper de , % à , % (gauthier, ). confronté à ce changement démographique et aux besoins particuliers des personnes âgées, à l’instar de la plupart des pays industrialisés, le québec a développé une gamme variée de services gérontologiques et gériatriques qui visent le maintien de l’autonomie et de la qualité de vie de cette population. parmi ces services, on retrouve le centre de jour, un service offert aux personnes âgées qui demeurent à domicile et présentent des incapacités. les interventions en centre de jour sont offertes principalement au moyen d’activités de groupe et comprennent des activités de surveillance de l’état de santé, des activités d’enseignement et de promotion de la santé, des activités de réadaptation, des interventions psychosociales et de loisirs, ainsi que du répit et du soutien aux familles (dabelko et zimmerman, ; gutman, milstein, killam, lewis et hollander, a; b; regroupement des centres d'hébergement et de soins de longue durée de la région de montréal, ). par ces interventions, le centre de jour vise à favoriser le maintien dans la communauté des personnes âgées qui présentent des incapacités. les centres de jour pour personnes âgées ont commencé à s’implanter au québec au début des années (tourigny, côté, laberge, paradis et joubert, ) et sont maintenant présents dans presque tous les territoires de centres locaux de services communautaires (clsc). cependant, même lorsque ce type de services est accessible, des études auprès de centres de jour (ou d’un ensemble de services destinés aux personnes âgées en perte d’autonomie, incluant des centres de jour) ont démontré un faible taux d’utilisation par la clientèle âgée (baumgarten, lebel, laprise, leclerc et quinn, ; montgomery et borgotta, ) et par la clientèle atteinte de démence (douglass et visconti, ; lawton, brody et saperstein, ). or, selon zarit, stephens, townsend et greene ( ), une utilisation régulière serait nécessaire pour induire des effets bénéfiques. dans un tel contexte, il importe de se questionner sur les déterminants de l’utilisation des centres de jour. les quelques études qui ont porté sur les facteurs qui influencent l’utilisation des services de centres de jour sont encore à ce jour non concluantes. les méthodes sont variées, de même que les variables étudiées. très peu de travaux ont inclus le type d’activités offertes parmi les variables étudiées. ainsi, il est difficile de tirer des conclusions sur les déterminants de l’utilisation des centres de jour. de plus, ces études sont en majorité américaines et nous ne savons pas si la dynamique d’utilisation des services est similaire au québec. en effet, il existe une variété de modèles de centres de jour aux États-unis : modèle social, modèle médical, centres spécifiques pour les personnes atteintes de démence (gaugler et zarit, ; weissert, elston, bolda, cready, zelman, sloane et coll., ). des modèles mixtes, combinant des caractéristiques des modèles médical et social, ont aussi été identifiés (cox et reifler, ; dabelko et zimmerman, ; national institute on adult day care, ). selon la description des services offerts dans les centres de jour québécois (regroupement des centres d'hébergement et de soins de longue durée de la région de montréal, ), il semble que les centres de jour au québec sont mixtes et génériques, c’est-à-dire qu’ils offrent à la fois des services habituellement considérés comme des services de santé (suivi infirmier de l’état de santé, activités de réadaptation) et des services de nature plus sociale (activités de socialisation pour des personnes isolées en raison d’une perte d’autonomie importante, répit aux personnes de soutien). ils acceptent une clientèle variée et adaptent leurs activités aux besoins diversifiés de cette clientèle. de plus, aux États-unis la participation à ces services, offerts dans un marché compétitif, est parfois limitée par la capacité financière des individus. au québec, elle est plutôt limitée par la capacité d’accueil des centres qui ont souvent des listes d’attente, bien que les coûts reliés au transport et aux repas (généralement inférieurs aux coûts des centres de jour aux États-unis) puissent aussi représenter des barrières à l’utilisation. par conséquent, les déterminants de l’utilisation des centres de jour, dans le contexte québécois, restent encore à définir. enfin, il faut préciser que différents aspects du phénomène de l’utilisation, à savoir le contact, le volume ou l’intensité d’utilisation et la durée, auront des prédicteurs différents (andersen et newman, ). le but de la présente recherche est de documenter l’utilisation des centres de jour dans un contexte québécois, par des personnes âgées qui vivent avec des incapacités. elle comporte trois objectifs généraux: ) caractériser les utilisateurs de centre de jour et ce qui les distingue des non- utilisateurs et analyser les déterminants de l’utilisation du centre de jour. ) identifier les activités qui sont offertes au groupe d’utilisateurs de centre de jour, ainsi que l’adéquation entre ces activités et les caractéristiques de santé des utilisateurs. ) définir, pour le groupe d’utilisateurs, les facteurs qui influencent la régularité d’utilisation du centre de jour. cette recherche apporte un éclairage utile pour la communauté scientifique bien sûr, mais aussi pour les personnes âgées et leur famille ainsi que pour les planificateurs de soins et de services. la compréhension des facteurs qui influencent l’utilisation des services de centres de jour permettra de mieux cibler les interventions pour les personnes les plus susceptibles d’en bénéficier et de revoir l’offre de services de façon à mieux l’adapter aux besoins de la clientèle cible. contexte de la thèse la recherche de ce projet d’études doctorales s’appuie sur une analyse secondaire d’informations provenant du projet de démonstration de services intégrés pour personnes âgées (sipa), un projet qui consistait en l’expérimentation d’un modèle de services intégrés pour les personnes âgées qui ont des incapacités, expérimenté de juin à mars , grâce à un financement de $ , millions du fonds d’adaptation des services de santé de santé canada et du ministère de la santé et des services sociaux du québec. dans le cadre de ce projet, personnes âgées de la région de montréal ont été réparties de façon aléatoire en deux groupes, l’un recevant les services intégrés, l’autre recevant les services réguliers. parallèlement à l’expérimentation, une équipe de recherche a complété une cueillette exhaustive de données comportant questionnaires auprès des personnes âgées (entre juin et septembre ), un questionnaire auprès des personnes de soutien (à l'été ), ainsi qu’un relevé de leur utilisation des services de santé, d’après les bases de données des organismes et des établissements de santé (tels la régie d’assurance maladie du québec, l’agence de la santé et des services sociaux de montréal, les hôpitaux et les centres de jour) (béland, bergman et lebel, ; béland, bergman, lebel, clarfield et coll., ; béland, bergman, lebel, dallaire et coll., ). même si ce projet utilise des données provenant du projet sipa, il s’agit d’études entièrement distinctes. en effet, l’utilisation du centre de jour n’est d’intérêt dans le projet sipa que pour estimer les coûts de santé des participants à l’étude. ainsi, cette étude sur les déterminants de l’utilisation des centres de jour vise des objectifs complètement différents. il est donc clair que les données provenant du projet sipa ont été explorées et analysées de façon différente et novatrice. de plus, une collecte originale de données auprès de coordonnateurs de centre de jour a permis de mieux comprendre l’ensemble de données relatives à la participation au centre de jour recueillies par l’équipe du projet sipa. la section qui porte sur les méthodes de collecte de données expliquera de façon plus détaillée, la provenance de chacun des types de données utilisées et la portée de la collecte de données originales. les résultats de cette recherche doctorale sont présentés dans trois articles inclus dans la présente thèse. une étude de la satisfaction des personnes de soutien des participants au projet sipa a aussi été réalisée pour répondre aux exigences de l’examen de synthèse du programme d’études doctorales en santé publique (savard, leduc, lebel, béland et bergman, – joint à l’annexe i). chapitre : recension des écrits nous décrirons d’abord globalement les centres de jour, leurs objectifs, ainsi que leur mode de fonctionnement. nous présenterons ensuite les principales conclusions des études qui ont porté sur leur efficacité. nous verrons que ces conclusions sont influencées par les taux d’utilisation du service. nous décrirons ensuite les études qui ont porté sur l’utilisation des centres de jour ou des services similaires pour en dégager ce qui a été observé sur les déterminants de l’utilisation de ces services. les centres de jour les centres de jour peuvent être définis de façon générale comme un endroit qui offre des services de jour à l’extérieur de la maison, dans un milieu protégé, pour des personnes âgées qui présentent une variété de types d’incapacités. ces services incluent généralement la surveillance de l’état de santé, des activités thérapeutiques incluant des soins de santé, des services de réadaptation et des services sociaux, de la socialisation, le repas du midi et des services de transport (dabelko et zimmerman, ; gaugler et zarit, ). toutefois, les services offerts par les divers centres de jour varient énormément d’un centre à un autre. ainsi, aux États-unis, on a tenté de classifier les divers modèles de centres de jour. le tableau i présente un résumé des différentes classifications recensées. les classifications les plus connues sont sans doute celles de weissert et collaborateurs ( ; ) qui distinguent deux, puis trois groupes de centres de jour : modèle médical et modèle social, puis des centres spécifiques pour les clientèles particulières (gutman et coll., b; gaugler et zarit, ). avec la grande variété de centres de jour qui sont maintenant disponibles, de même que l’évolution des besoins des clients et en particulier de la clientèle atteinte de démence, les distinctions entre ces différents modèles ne semblent pas très nettes (leitsch, zarit, townsend et greene, ; national institute on adult day care, ). plusieurs centres se décrivent comme des modèles mixtes (cox et reifler, ; dabelko et zimmerman, ). tableau i : classifications des centres de jour classification intuitive selon le type de soins (o’brien, ; szekais, ; tate, ) classification empirique selon l’intensité des diverses catégories de services (conrad et coll., ) classifications empiriques de weissert et coll. ( et ) vocation médicale vocation sociale hôpital de jour (o’brien, ; szekais, ), centre de soins de rétablissement en milieu communautaire (szekais, ) et modèle de restauration (tate, ) : ils s’adressent aux personnes qui nécessitent des soins médicaux et de réadaptation importants, habituellement après un congé de l’hôpital. les services sont habituellement pour une durée limitée (o’brien, ; szekais, ). centre de traitement de jour : offre des services de rétablissement (réadaptation et services sociaux) à une clientèle ayant un handicap mental ou souffrant de maladies chroniques. la durée peut être illimitée (o’brien, ) programme de préservation de la santé (o’brien, ; szekais, ) ou modèle de maintien (tate, ) : services infirmiers, surveillance de l’état de santé, promotion de la santé, services limités de réadaptation et activités sociales pour des individus à risques qui nécessitent des soins de longue durée. pour szekais ( ), la socialisation et les loisirs sont importants dans ce programme. centre de soins de jour (o’brien, ) ou modèle psychosocial : (tate, ) : programme d’activités sociales en milieu protégé pour des personnes dont la santé est délicate ou qui ont des incapacités et qui sont isolées. service de relève : offre du répit aux familles qui donnent des soins à une personne nécessitant de la supervision continuelle sur heures (szekais, ) centre de type réadaptation qui offre beaucoup de services cliniques et de services de réadaptation et de réentraînement aux activités quotidiennes et peu d’activités récréatives. centre à intensité clinique élevée avec composante sociale : offre beaucoup de services cliniques et de services de réadaptation et de réentraînement aux activités quotidiennes, mais aussi des activités sociales et récréatives et du soutien aux familles. centre à intensité clinique modérée avec composante sociale : offre peu de services cliniques de type médicaux, mais certains services de réadaptation et surtout du réentraînement aux activités quotidiennes, des activités sociales et récréatives et du soutien aux familles. centre à but général : offre peu de services cliniques et de services sociaux, très peu de services de réadaptation et un nombre modéré d’activités sociales et récréatives. semble approprié pour les personnes qui ont des incapacités très légères. centre à faible intensité d’activités : offre peu de services dirigés, ce sont possiblement des centres communautaires pour des clients autonomes. modèle médical : (weissert, ) auspice : centres affiliés aux établissements de longue durée et de réadaptation (weissert, ), qui reçoivent une clientèle avec plus d’incapacités, mais moins de problèmes mentaux que celle des autres modèles. ils offrent en général plus de services thérapeutiques et de santé. modèle mixte : plusieurs centres se décrivent comme combinant les caractéristiques des modèles médical et social de weissert (cox et reifler, ; dabelko et zimmerman, ). modèle social : (weissert, ) auspice : centres affiliés aux centres communautaires ou de services sociaux surtout, ainsi que centres non affiliés (weissert, ), qui rejoignent une clientèle avec moins d’incapacités et offrent généralement plus d’activités de nature sociale. vocation spéciale centre psychiatrique de jour (o’brien, ) ou services psychosociaux (szekais, ): pour une clientèle qui souffre de maladie mentale aiguë ou chronique. centre pour personne avec démence : offre moins de services cliniques et de services de réadaptation, mais plusieurs types de loisirs thérapeutiques et beaucoup de soutien aux familles. centres à vocation spéciale (weissert, ) : ils s’adressent à une clientèle précise : anciens combattants, non- voyants, personnes atteintes de démence, etc. au canada, gutman et collaborateurs ( a; b) décrivent des centres de jour de la colombie-britannique qui se répartissent sur un continuum de services de nature médicale à sociale, tandis qu’en alberta, on semble distinguer plus clairement des hôpitaux de jour et des centres de jour de nature sociale (ross-kerr, warren, schalm, smith et godkin, ; warren, ross-kerr, smith et schalm, ). au québec, les centres de jour semblent correspondre au niveau de services du modèle mixte. le ministère de la santé et des services sociaux du québec ( ) définit le centre de jour comme « une ressource qui offre, à une clientèle inscrite et qui présente une perte d’autonomie pouvant entraver son maintien à domicile, des programmes et des activités de jour de nature préventive, thérapeutique ou de réadaptation » (p. ). les centres de jour québécois se distinguent nettement des hôpitaux de jour par la nature et le niveau d’intensité des interventions qui sont offertes. l'hôpital de jour utilise toutes les ressources hospitalières disponibles et nécessaires pour l’évaluation, le diagnostic et le traitement. la clientèle requiert des soins médicaux, infirmiers et de réadaptation qu'elle ne pourrait recevoir ailleurs sans être hospitalisée. l’intervention en hôpital de jour est habituellement de durée limitée (gratton, ; ministère de la santé et des services sociaux, ). bien que le centre de jour compte des professionnels de la santé et de la réadaptation parmi son personnel, il ne comprend généralement pas de personnel médical. la nature des activités est davantage préventive avec un accent sur le maintien et la consolidation des capacités. les durées d’intervention des centres de jour peuvent être longues, et se poursuivre tant que la fréquentation du centre de jour continue de contribuer au maintien à domicile de la personne âgée (agence de la santé et des services sociaux de montréal, ). selon ce même document, le but du centre de jour est de : « favoriser le maintien à domicile de la clientèle âgée et donc de retarder, sinon éviter, le recours à un milieu d’hébergement institutionnel, et ce, dans le contexte d’une qualité de vie optimale. pour ce faire, le centre de jour poursuit essentiellement trois objectifs : • le maintien ou l’amélioration de l’état de santé biopsychosociale; • le maintien et la consolidation des capacités; • le soutien aux proches aidants. il vise également à soutenir l’interaction entre l’usager et son réseau social. il doit faciliter l’intégration de la clientèle aux activités de la communauté, notamment des organismes communautaires, lorsque celle-ci est en mesure de le faire. » ( p. ) le comité d'orientation des centres de jour du regroupement des centres d'hébergement et de soins de longue durée de la région de montréal précise la façon d’opérationnaliser ces objectifs. le maintien et la consolidation de l’autonomie de la personne âgée s’actualisent par des activités de prévention et des activités thérapeutiques. les activités de prévention incluent la surveillance de l’état de santé et, lorsqu’elle survient, l’identification rapide de la détérioration de la santé, ce qui permet une intervention précoce par une référence à une ressource appropriée. elles comprennent aussi des activités qui visent le maintien ou l’amélioration de la qualité de vie, de l’estime de soi et des liens sociaux qui favorisent la vie dans la communauté. les activités thérapeutiques incluent des interventions pour stimuler le maintien ou la consolidation des capacités motrices, sensorielles, cognitives et psychologiques et favoriser l’utilisation des capacités résiduelles ainsi que l’apprentissage de moyens de compensation pour les pertes de capacités qui demeurent (regroupement des centres d'hébergement et de soins de longue durée région de montréal, ; ). le soutien aux proches aidants apparaît essentiel pour favoriser le maintien à domicile des personnes âgées en perte d’autonomie, puisqu’au canada comme dans plusieurs pays, ces personnes reçoivent la majorité de leur soutien de la part de membres de leur famille ou d’autres proches non rémunérés. (garant et bolduc, et connidis, , cités par ducharme, lebel et bergman, ; canadian study of health and aging working group, ). plusieurs études ont démontré que ces tâches peuvent entraîner un sentiment de fardeau, ainsi que des risques pour la santé tant physique que psychologique de ces personnes de soutien (centers for disease control and prevention, ; chenoweth et spencer, ; ducharme, levesque, zarit, lachance et giroux, ; pinquart et sörensen, , pushkar-gold, feldman-reis, markiewicz et andres, ; schulz et beach, ). la majorité des centres de jour considèrent le soutien aux familles comme un rôle important du centre de jour, qui se concrétise de plusieurs façons. le centre de jour peut offrir un répit aux personnes de soutien. en effet, dans le cas de personnes âgées qui demandent une assistance ou une supervision continue, la participation de la personne âgée au centre de jour permet à la personne de soutien de se libérer de ces tâches pendant quelques heures par semaine. par la stimulation des capacités résiduelles de la personne âgée, elle peut aussi faciliter certaines tâches d’assistance quotidienne accomplies par la personne de soutien. de plus, certains centres de jour offrent des groupes d’éducation et de soutien pour les familles ou encore permettent la participation des personnes de soutien à certaines fêtes ou activités spéciales incluses à leur programmation, de façon à diminuer leur isolement (curran, ; gitlin, reever, dennis, mathieu et hauck, ; reilly, venables, hughes, challis et abendstern, ). les orientations de l’agence de la santé et des services sociaux de montréal ( ) précisent que « c’est particulièrement au niveau des services de répit que le centre de jour est appelé à intervenir auprès des proches aidants » (p. ), d’autres activités d’éducation et de soutien aux familles pouvant être mises en place dans les clsc. le regroupement des centres d'hébergement et de soins de longue durée de la région de montréal ( , ) et l’agence de la santé et des services sociaux de montréal ( ) demeurent très généraux quant aux activités à mettre en place dans les centres de jour. le document le plus détaillé retrouvé à ce sujet est le centre de jour: un cadre de référence de l’association des centres d’accueil du québec en , qui regroupe les activités des centres de jour en six sous-programmes portant sur les aspects suivants : • incapacités fonctionnelles d’origine motrice; • incapacités fonctionnelles d’origine sensorielle; • incapacités fonctionnelles d’origine cognitive; • facteurs socio-environnementaux; • santé physique; • santé mentale. le cadre de référence propose, pour chacun des sous-programmes, une liste d’activités de groupe et d’activités individuelles qui peuvent être réalisées par les centres de jour (voir tableau ii). ces derniers adaptent, bien sûr, ces suggestions en fonction des besoins spécifiques de leur clientèle et des ressources dont ils disposent. tableau ii : activités en centre de jour : adapté du cadre de référence de l’association des centres d’accueil du québec ( ) sous- programmes activités incapacité d’origine motrice incapacité d’origine sensorielle incapacité d’origine cognitive facteurs socio- environnementaux santé physique santé mentale Évaluation • bilan articulaire et musculaire • limitations ou déformation • compréhension des consignes • vitesse de réaction • équilibre • dextérité manuelle • endurance et tolérance à l’effort • capacités fonctionnelles vue • évaluation ophtalmologique • évaluation fonctionnelle: avq, orientation et mobilité ouïe • dépistage • évaluation audiologique • évaluation du handicap fonctionnel de communication • fonctions cognitives • capacités fonctionnelles • sécurité à domicile • réseau de soutien • identification de la problématique • profil de santé • bilan fonctionnel • dépistage des clients à risque • histoire de la problématique • identification de la problématique actuelle classe d’exercices • régulière • groupe d’ambulation • groupe de préhension • pour les yeux • régulière • régulière groupe de tâches • menuiserie • horticulture • artisanat • cuisine • etc. • cuisine • artisanat adapté • tâches domestiques (ex. : préparer les serviettes de table) groupe d’avq • enseignement et entraînement avq • enseignement sur aides techniques intégrer dans la routine au cj • se vêtir et se dévêtir • utiliser la toilette groupe information santé ou groupe d’activités spécifiques pour la problématique pour tous • tension artérielle • médicaments • hygiène des pieds • alimentation groupe spécifique pour certaines pathologies • hémiplégie • sclérose en plaques • arthrite • parkinson stratégies de communication • discrimination par le toucher, les odeurs • stratégie d’écoute, lecture labiale, etc. • exercices de mémoire et de concentration stimulation cognitive • gymnastique des fonctions cérébrales • réminiscence • orientation à la réalité • stimulation sensorielle pour tous • nutrition • médication • sécurité • vie saine • information sur certaines pathologies groupe spécifique pour certaines pathologies • diabète groupe d’information et de prévention en santé mentale • relaxation • médication sous- programmes activités incapacité d’origine motrice incapacité d’origine sensorielle incapacité d’origine cognitive facteurs socio- environnementaux santé physique santé mentale groupe psychosocial • remotivation • deuil • estime de soi • vivre avec un handicap (groupe de soutien) • information sur services communautaires • vivre avec un handicap visuel (groupe d’adaptation et de soutien) • vivre avec un handicap auditif(groupe d’adaptation et de soutien) • information sur ressources disponibles • groupe de valorisation et de socialisation (peut inclure jeux, zoothérapie, musique, etc.) • groupe d’échange sur des sujets communs de préoccupation (vieillissement, stress, testament) • socialisation (jeux, chants, excursions) • groupe de préparation à l’hébergement • groupe de réinsertion sociale • adaptation au vieillissement • relaxation • information sur services communautaires • prévention des situations potentielles de détresse • revalorisation du rôle social et estime de soi • groupe d’entraide à la suite d’un deuil • groupe de suivi relié à la consommation abusive d’alcool ou de médicaments interventions individuelles • ergothérapeute • physiothérapeute • infirmière • intervenant psychosocial • audiologiste • ergothérapeute • infirmière • ergothérapeute • intervenant psycho- social • intervenant psycho- social • infirmière (suivi de ta, de poids et de diète, de médication, soins infirmiers sous prescription médicale) • ergothérapeute et physiothérapeute • intervenant psycho- social • infirmière activités indirectes générales • rencontre avec aidant (programme d’exercice à domicile) • contact avec ressources du milieu • rencontre avec aidant : suivi des stratégies de communication • contact avec ressources du milieu • rencontre avec aidant : enseignement et soutien • contact avec ressources du milieu • rencontre avec aidant • contact avec ressources du milieu • rencontre avec aidant : enseignement (insuline, dosette) • contact avec ressources du milieu • rencontre avec aidant (groupe de soutien) • contact avec ressources du milieu activités indirectes spécifiques • démarches pour transport adapté, vignettes de stationnement, demande de fauteuil roulant, finition d’orthèse, recherche ou fabrication d’aide technique • démarches pour subvention pour appareils spécialisés, transport adapté, etc. • référence en réadaptation spécialisé • aménagement des locaux (éclairage, réverbération du son, système d’amplification de groupe, etc.) • visite préinscription à domicile recommandée • accueil avec les personnes significatives • identification d’un intervenant responsable • aménagement des locaux (diminuer stimuli non utiles) • démarches pour transport adapté, vignettes de stationnement, achat d’équipement • référence à des ressources spécialisées en psychiatrie ou en désintoxication • suivis avec les ressources intermédiaires, les centres de crises, etc. À ce jour, aucune étude n’a été effectuée pour vérifier dans quelle mesure ces activités sont réellement offertes dans les centres de jour. À notre connaissance, ce cadre de référence n’a pas non plus été mis à jour depuis . au québec, la majeure partie du budget des centres de jour provient du ministère de la santé et des services sociaux, toutefois une participation financière de l’usager est exigée pour couvrir une partie des coûts de transport et de repas, lorsque ceux-ci sont offerts à l’usager. le regroupement des centres d'hébergement et de soins de longue durée de la région de montréal ( ) recommande d’uniformiser la contribution financière des utilisateurs de centre de jour de la région à $ pour le transport aller-retour et $ pour le repas du midi. ce regroupement n’ayant qu’un rôle consultatif, les centres de jour sont libres de suivre ou non cette recommandation. les critères d’admissibilité des divers centres de jour du québec varient, entre autres, quant aux services offerts à la clientèle atteinte de troubles cognitifs et à celle qui présente de l’incontinence (tourigny et coll., ). puisque ces clients ont aussi grandement besoin de services s’ils souhaitent demeurer à domicile, les orientations gouvernementales actuelles préconisent de ne pas les exclure des centres de jour, sans nécessairement accorder les ressources nécessaires à leur intégration. ceci donne lieu à des directives qui laissent place à interprétation, comme celle de l’agence de la santé et des services sociaux de montréal ( ) : « certaines clientèles ne peuvent ou ne doivent pas être admises en centre de jour compte tenu des objectifs poursuivis par ce programme. c’est le cas de la clientèle : • dont les besoins sont strictement d’ordre social ou récréatif et qui peuvent fréquenter les ressources de la communauté (…); • qui, malgré les interventions qui ont été effectuées à ce niveau, présente un comportement perturbateur tel qu’il compromet l’atteinte des objectifs du groupe et sa sécurité; • qui nécessite un encadrement selon un ratio / de façon continue. aucun autre motif ne devrait justifier le refus d’admettre un usager en centre de jour s’il rencontre les critères d’admissibilité. par exemple, l’incontinence et le besoin d’assistance pour les transferts à la toilette ne devraient pas constituer des motifs d’exclusion d’un usager au centre de jour. cependant, dans un contexte où les ressources sont limitées, certains centres de jour pourraient faire le choix de ne pas admettre la clientèle nécessitant l’assistance de deux personnes pour le transfert à la toilette ou celle requérant de l’aide à l’alimentation. il apparaît toutefois souhaitable que ces décisions soient prises en procédant à une analyse cas par cas qui tiendrait compte d’un ensemble de facteurs, dont des impacts pour l’usager et sa famille de ne pas fréquenter le centre de jour » (p. ). de même, selon l’agence de la santé et des services sociaux de montréal ( ), la fréquence de participation au centre de jour peut varier d’une à cinq visites par semaine, mais en raison de ressources limitées « l’intensité des services ou la fréquence des visites, doivent faire l’objet d’une mise en priorité » (p. ). les données statistiques présentées dans ce document pour - et - montrent que % des participants sont inscrits à raison d’une journée par semaine et % à raison de deux jours par semaine. ceci semble similaire à ce qui est observé ailleurs au canada où des taux de participation moyens allant de , à , jour par semaine sont rapportés (gottlieb et johnson, ; gutman et coll., b; neufeuld et strang, ; ross-kerr et coll., ), mais inférieur à ce qui est observé aux États-unis où on rapporte des participations moyennes d’un peu plus de trois jours par semaine (conrad, hanrahan et hughes, ; weissert et coll., ; zarit et coll., ). dans le contexte québécois, le premier contact avec le centre de jour est rarement initié par la personne âgée ou sa personne de soutien. en effet, pour assurer la coordination des interventions qui visent le maintien à domicile des personnes âgées vulnérables, l’agence souhaite que toutes les demandes de participation en centre de jour soient d’abord évaluées par le clsc, à moins qu’elles ne proviennent d’un centre hospitalier, auquel cas la demande peut être faite simultanément au centre de jour et au clsc. ainsi, à montréal en - , , % des participants en centre de jour y avaient été dirigés par leur clsc (agence de la santé et des services sociaux de montréal, ). le premier contact avec un professionnel de la santé peut donc avoir été initié par la personne âgée qui demande de l’aide au clsc pour réaliser diverses activités de la vie quotidienne ou par un proche qui demande du soutien. il peut aussi provenir d’une détérioration de l’état de santé qui a entraîné une hospitalisation. le plan de congé du centre hospitalier peut inclure une référence au centre de jour. la figure présente de façon graphique les étapes du cheminement d’une référence en centre de jour, en partant de l’identification du besoin, en passant par la référence et l’admission, jusqu’au congé. les motifs de congé les plus fréquents sont l’hébergement, l’hospitalisation, le décès, le refus de participer et la détérioration trop grande de l’état de santé qui empêche de fréquenter le centre de jour. plus rarement, on observera des congés pour atteinte des objectifs ou amélioration de l’état de santé, pour des problèmes de transport ou des raisons financières, ou encore pour un déménagement (cox, reifler et yates, ; dabelko, ; mace et rabins, ; neufeuld et strang, ; tourigny et coll., ; wallace, ). les problèmes de comportement sont aussi une raison qui amène à cesser l’utilisation des centres de jour chez les personnes atteintes de troubles cognitifs (lawton, brody et saperstein, ; mace et rabins, ; zarit, stephens, townsend, greene et leitsch, b). figure : cheminement d’une référence au centre de jour Évaluation des options : • centre communautaire • centre de jour • répit à domicile • répit en hébergement temporaire • hébergement permanent critères d’évaluation • attributs des services • croyances à l’égard de ces attributs • critères d’admission des services • admissibilité en fonction de ces critères Évaluation du premier contact par le client et par sa personne de soutien principale besoin du client et de la personne de soutien évalué par les professionnels du centre de jour Évaluation au centre de jour client refuse le centre de jour client admis et accepte de participer au centre de jour client pas admissible participation prévue aux activités du centre de jour conformité à la recommandation de participation participation soutenue participation irrégulière Évaluation satisfaisante de l’expérience : • répond au besoin • ne crée pas d’insécurité ou d’autres émotions négatives capacité à poursuivre la participation : • perception de sa capacité fonctionnelle • capacité évaluée, absence de barrières architecturales, absence de problèmes de comportement importants, etc. • capacité à poursuivre le maintien à domicile oui fort oui faible objectifs atteints intensité de la participation non congé lors de ce contact, identification d’un besoin qui peut relever du centre de jour: • besoin de surveillance de l’état santé • besoin d’activités pour maintenir les capacités fonctionnelles • besoin de briser un isolement lié à des incapacités fonctionnelles à utiliser d’autres ressources pour socialiser • besoin de répit pour la personne de soutien principale contact avec des professionnels de la santé • clsc • hôpital de jour • hôpital utilisateurs de centre de jour congé centre de jour acceptable pour le client et pour sa personne de soutien principale besoin du client et de la personne de soutien évalué par les professionnels et correspond aux objectifs perçus du centre de jour référence au centre de jour un besoin de santé ou de service de soutien pour la personne âgée ou sa personne de soutien l’efficacité des centres de jour À ce jour, les études sur l’efficacité des centres de jour pour réduire ou retarder l’institutionnalisation de la clientèle ou pour réduire le fardeau des personnes de soutien ont démontré des résultats variables (voir zarit, gaugler et jarrott, a; gaugler et zarit, ). plusieurs études ont observé de faibles taux d’utilisation des services, sans toutefois considérer cette variable dans l’analyse des résultats. en général, ces études n’ont pu démontrer d’effets à la participation à un centre de jour. les études qui ont contrôlé les taux d’utilisation sont plus encourageantes. ces études sont en majorité des études quasi- expérimentales avec groupe témoin non-équivalent, sauf l’étude de baumgarten et collaborateurs qui consiste en un essai randomisé et celle de wilson et collaborateurs qui est une étude de cohorte. bien que les données probantes provenant d’études de qualité soient encore insuffisantes (mason et coll., ), les quelques études recensées ci-dessous suggèrent tout de même des effets positifs à la fréquentation du centre de jour. l’étude de baumgarten et collaborateurs ( ), menée auprès d’une clientèle générale (c.-à.-d. une clientèle qui comprend des personnes avec ou sans démence), a démontré une réduction du fardeau des personnes de soutien des participants qui avaient un minimum de visites au centre de jour en semaines, alors que pour ceux qui avaient moins de visites, le fardeau des personnes de soutien semble légèrement augmenté. dans l’étude de zank et schacke ( ), auprès d’une clientèle générale comportant tout de même % de participants atteints de démence, les participants étaient inscrits à un centre de jour à raison d’un minimum de deux fois par semaine. les membres du groupe d’utilisateurs et du groupe témoin présentent des caractéristiques sociodémographiques et de santé similaires au début de l’étude. les analyses incluent deux mesures pour chaque variable : la valeur obtenue par la personne au début de l’étude et le niveau de changement pendant neuf mois. les auteurs rapportent une stabilisation du bien-être psychologique et une légère amélioration du fonctionnement cognitif des participants au centre de jour, comparativement à une détérioration pour le groupe témoin. dans les études suivantes les participants sont tous des personnes atteintes de démence. l’étude de schacke et zank ( ) utilisent une méthode identique à celle de zank et schacke ( ). les auteurs ont observé une réduction significative du stress des personnes de soutien des participants comparativement à un groupe témoin constitué de non-utilisateurs de centre de jour. dans l’étude de zarit et collaborateurs ( ), les participants étaient aussi inscrits à un centre de jour à raison d’un minimum de deux fois par semaine. pour diminuer les biais possibles reliés à la répartition non aléatoire des groupes, la valeur obtenue par la personne au début de l’étude pour les différentes mesures de résultats, de même que les variables sociodémographiques pour lesquelles les utilisateurs et les non-utilisateurs différaient au début de l’étude ont été incluses comme variable de contrôle dans les analyses multivariées. cette étude a trouvé des niveaux de stress significativement inférieurs chez les personnes de soutien d’utilisateurs de centre de jour comparativement à ceux des non-utilisateurs. des analyses subséquentes de cette même étude ont démontré une diminution du temps consacré à la gestion des comportements dérangeants et une diminution du nombre de comportements problématiques rapportés par les personnes de soutien des utilisateurs de centre de jour (gaugler, jarrot, zarit, stephens, townsend et greene, ). dans une étude suédoise, en excluant du groupe expérimental les participants qui n’avaient utilisé le centre de jour qu’une ou deux fois, on a observé, sur une période d’un an, des taux d’institutionnalisation nettement inférieurs parmi le groupe expérimental ( %) par rapport au groupe témoin constitué de personnes sur la liste d’attente du centre de jour ( %) (wimo, mattsson, adolfsson, eriksson et nelvig, ). les membres du groupe expérimental et du groupe témoin présentaient des caractéristiques socio- démographiques et de santé similaires au début de l’étude. gitlin et collaborateurs ( ) ont démontré qu’un soutien régulier apporté à l’aidant du participant au centre de jour dans le but de développer des habiletés de résolution de problèmes chez l’aidant, augmentait l’utilisation du centre de jour. lorsque comparé à un groupe ayant reçu les interventions courantes du centre de jour, le groupe ayant reçu ce soutien particulier a démontré un meilleur bien-être de l’aidant et une diminution de l’institutionnalisation. afin de contrôler les différences préexistantes possibles entre les membres des deux groupes, le bien-être de l’aidant au début de l’étude, de même que les variables sociodémographiques pour lesquelles les utilisateurs et les non- utilisateurs différaient au début de l’étude ont été incluses comme variables de contrôle dans les analyses multivariées. dans une étude de cohorte, wilson, mccann, li, aggarwal, gilley et evans ( ) ont démontré que l’utilisation du centre de jour préalable au placement en institution a un effet protecteur sur le déclin cognitif de personnes atteintes de démence lors du placement et que cet effet est positivement corrélé à l’intensité de l’utilisation du centre de jour avant le placement. ainsi, il apparaît important de contrôler le niveau d’exposition au centre de jour lorsqu’on cherche à évaluer les effets de ce service sur les participants et leurs personnes de soutien. plus encore, pour maximiser les effets du centre de jour, de niveaux minimaux de participation doivent faire partie des buts explicites des centres de jour (baumgarten et coll., ). les facteurs qui influencent la participation au centre de jour doivent être bien compris afin d’agir en fonction de ce but. l’utilisation des centres de jour lors de la mise en place des centres de jour au québec au début des années , il était prévu que ces programmes toucheraient près de % de la population de leur territoire âgée de plus de ans. en , ils en rejoignaient effectivement % (tourigny et coll., ). selon les données statistiques fournies par les centres de jour, personnes étaient inscrites dans l’un des centres de jour de l’Île de montréal au mars . considérant les départs et les nouvelles inscriptions, un total de personnes avaient participé aux activités d’un centre de jour à un moment ou un autre au cours de l’année - . de ce nombre, avaient moins de ans (agence de la santé et des services sociaux de montréal, ). les participants de plus de ans représentent % des personnes de ce groupe d’âge dans l’Île de montréal selon le recensement de (statistique canada, ). le pourcentage des personnes en perte d’autonomie qui reçoivent les services d’un centre de jour au québec ou à montréal n’est toutefois pas connu. cette donnée serait pertinente, étant donné leur mandat orienté vers cette clientèle. dans les écrits scientifiques, les données à ce sujet sont aussi peu nombreuses. dans une étude auprès de participants inscrits à quatre health maintenance organization (hmo), lynch, harrington et newcomer ( ) ont trouvé qu’entre , et , % des personnes chez qui ils ont identifié une incapacité pour au moins une activité de vie quotidienne ou deux activités de vie domestique ont utilisé un centre de jour. la grande variation semblait provenir de la disponibilité différente des centres de jour à l’intérieur de la gamme de services couverts par chacun des hmo à l’étude. dans l’étude de kosloski et montgomery ( ) auprès de personnes âgées ayant au moins deux limitations d’activités quotidiennes, % des participants utilisaient un centre de jour. dans une enquête populationnelle de comtés du kentucky et de l’indiana, barber, paton et wishnia ( ) ont estimé que familles comptaient au moins une personne âgée de plus de ans qui présentait des incapacités et nécessitait au moins cinq heures de soins par jour de la part d’un membre de la famille. les données sur le nombre d’utilisateurs de centre de jour dans la région étudiée faisaient état de participants, soit environ , % du bassin de population qui présente théoriquement des besoins pour ce type de service. de l’étude manitobaine de strain et blandford ( ) auprès de personnes âgées qui présentaient au moins une incapacité dans au moins une activité de vie quotidienne ou domestique, % avaient utilisé un centre de jour dans la dernière année. l’utilisation d’un service peut être vue comme un indicateur de l’adaptation du service à la population qu’il est censé servir (concept de « goodness of fit » dans dabelko, ). la recherche sur ce sujet démontre que le centre de jour n’est pas adapté à toute la population qui répond aux critères d’éligibilité. selon caserta, lund, wright et redburn ( ), les personnes de soutien de personnes atteintes de démence mentionnent qu’elles ont besoin de services tels que le répit et les centres de jour, pourtant seulement % de ceux qui connaissent l’existence de ces services les utilisent. de plus, seule la moitié des utilisateurs le font de façon régulière. même lorsque ce type de services est accessible gratuitement ou à faible coût, des études ont démontré un faible taux d’utilisation par la clientèle âgée (baumgarten et coll., ; montgomery et borgotta, ) et par la clientèle atteinte de démence (douglass et visconti, ; lawton et coll., ). par exemple, dans l’étude de baumgarten et collaborateurs ( ), seulement % des sujets inscrits au centre de jour ont eu au moins une présence par semaine, et , % ( personnes) n’ont aucune présence en semaines. de forts taux d’abandon sont aussi rapportés dans les trois premiers mois d’utilisation : entre % et % dans des études auprès de la clientèle atteinte de démence (gottlieb et johnson, ; schacke et zank, ; wells, jorm, jordan et lefroy, ; zarit et coll., b) et entre et % dans des études auprès de la clientèle générale (dabelko, ; neufeld et strang, ). il semble qu’après les deux ou trois premiers mois de participation, les taux d’abandon diminuent grandement (dabelko, ). les personnes qui se sont bien adaptées au centre de jour peuvent y participer pendant plusieurs années; les statistiques des centres de jour de la région de montréal pour - font état de % d’utilisateurs ayant des durées de séjours de plus de mois (agence de la santé et des services sociaux de montréal, ) les faibles taux d’utilisation des centres de jour surprennent étant donné les taux élevés de satisfaction chez les utilisateurs (henry et capitman, ; jarrott, zarit, parris- stephens, townsend et greene, ; weissert, elston, bolda, zelman, mutran et magnum, ) et le besoin de répit fréquemment exprimé par les personnes de soutien de la clientèle atteinte de démence (brodaty, thomson, thomson et fine, ; caserta et coll., ; fortinsky et hathaway, ; montoro-rodriguez, kosloski et montgomery, ; philp et coll., ; theis, moss et pearson, ). quelques études, qui portent majoritairement sur la clientèle atteinte de démence, se sont penchées sur les raisons mentionnées par les personnes de soutien pour utiliser les services de centre de jour ou de répit. selon monahan ( ), les personnes de soutien qui utilisent les centres de jour mentionnent : les bienfaits pour le parent atteint de démence ( , %), la possibilité de socialisation pour le parent ( , %), le répit pour la personne de soutien ( , %), pour pouvoir travailler ( , %), pour éviter un placement ( , %). par ailleurs, la raison la plus importante pour la majorité des personnes de soutien est d’obtenir du répit. selon cotrell ( ), les personnes de soutien qui sont des enfants corésidants indiquent une préférence pour le centre de jour plutôt que d’autres formes de répit, pour les bienfaits de la socialisation qu’il procure à leur parent atteint de démence. de plus, le centre de jour représente un coût moins élevé que d’autres formes de supervision. les conjoints perçoivent le répit de deux façons, soit un abandon du conjoint malade et un pas vers l’institutionnalisation, ou encore, une occasion de socialisation pour le conjoint. ceux qui le perçoivent de la seconde façon ont tendance à utiliser davantage ce service. la perception du bienfait pour la personne âgée est aussi une raison d’utilisation rapportée par beisecker, wright, chrisman et ashworth ( ), peu importe la relation de la personne de soutien avec la personne âgée. enfin, soulignons que selon gottleib et johnson ( ), lorsque cette option leur est présentée, une majorité de personnes de soutien indique que l’utilisation du centre de jour est aussi une façon de vérifier comment la personne âgée s’adapte à des soins prodigués par d’autres et d’obtenir du soutien pour la planification des soins de longue durée. d’autres auteurs se sont penchés sur les raisons rapportées pour ne pas utiliser les services. les personnes âgées inscrites à un centre de jour mais qui omettent de s’y présenter mentionnent le trop grand effort exigé pour la participation aux activités, l’incapacité de se préparer si tôt le matin, les troubles de l’ouïe ou de la vue qui nuisent à la participation en groupe, l’incapacité de sortir du domicile en raison d’obstacles physiques au domicile (marches), les déplacements trop longs, les frais de déplacement et de repas (gutman et coll., a), ainsi que le manque d’individualisation du programme de récréation qui ne correspond pas à leurs intérêts ou du programme d’exercices qui ne correspond pas au but recherché (neufeuld et strang, ). tant pour la clientèle atteinte de démence (casserta et coll., ) que pour la clientèle générale (strain et blandford, ), la principale raison rapportée par les personnes de soutien pour ne pas utiliser ces services est le manque de besoin immédiat. la raison qui occupe la seconde place pour ne pas utiliser le centre de jour dans l’étude de strain et blandford est le manque de connaissance à propos du service. il est utile de noter que si environ % de l’échantillon ne connaissaient pas l’existence des divers types d’aide à domicile (entretien ménager, soins personnels, soins infirmiers, livraison de repas), % des personnes de soutien ne savaient pas que le centre de jour était un service disponible, alors que de à % ne connaissaient pas les autres types de services de répit. les autres raisons rapportées par les personnes de soutien pour ne pas utiliser les centres de jour et les services de répit incluent : la difficulté de laisser le parent avec un étranger (beisecker et coll., ; caserta et coll., ; cotrell, ), le sentiment que c’est un devoir de s’occuper du proche (cohen-mansfield, besansky, watson et bernhard, : raison rapportée par les femmes seulement), le peu d’habitude d’utilisation des services formels (montgomery et borgotta, ), la difficulté à préparer le parent (lawton et coll., ), la perception que le besoin du parent est différent de celui des autres clients du programme (cohen-mansfield et coll., ) ou que le programme ne répond pas aux besoins du proche (beisecker et coll., ), la présence de problèmes de comportement importants, le refus de ce type d’activités par la personne âgée (beisecker et coll., ; cohen-mansfield et coll., ; cotrell, ) et la détérioration de l’état de santé (cotrell, ). certaines caractéristiques organisationnelles comme le manque de transport, le coût, les critères d’exclusion de certains centres (incontinence, problèmes de comportement, risques de fugues, etc.), limitent aussi la participation aux centres de jour (beisecker et coll., ; caserta et coll., ; lawton et coll., ; wallace, ). le manque de personnel adéquatement formé pour s’occuper de personnes atteintes de démence, le ratio personnel/patient inadéquat, un environnement inadéquat (malpropreté, espace insuffisant, etc.) sont aussi cités comme des barrières à l’utilisation du centre de jour (beisecker et coll., ). les personnes de soutien semblent utiliser le répit tardivement dans le processus de maladie de la personne dont elles prennent soin. les niveaux de stress et de fardeau des aidants sont habituellement déjà élevés lorsqu’ils choisissent de recourir à des services (cox, ; cox et coll., ; gaugler et zarit, ; gottlieb et johnson, ; zarit et coll., b). pour certains, la situation de soins à domicile a déjà commencé à se désintégrer et les démarches pour le placement en institution sont déjà entreprises lors de l’admission au centre de jour. ces personnes sont généralement de brefs utilisateurs de centre de jour (gottlieb et johnson, ). si un des objectifs du centre de jour est de retarder le placement en institution, les politiques de financement et d’accès à ce service doivent reconnaître le besoin d’y avoir recours tôt dans le processus (gaugler, kane, kane et newcomer, ). pour favoriser une utilisation précoce du centre de jour, il faut aussi agir sur les perceptions des personnes de soutien, diminuer le sentiment d’échec associé au recours à l’aide extérieure et la peur que l’utilisation de services formels leur fasse perdre le contrôle qu’elles ont sur les décisions relatives à la personne dont elles prennent soin, de même que les rassurer sur le bien-être de la personne âgée lorsqu’elle participe au programme (gottlieb et johnson ). cependant, adoucir la transition vers le placement peut aussi être un objectif du centre de jour, un but recherché par certaines personnes de soutien. les centres de jour peuvent mettre en place des interventions à cet effet et la planification efficace du placement est un résultat mesurable (gottlieb et johnson, ). par exemple, l’utilisation du centre de jour préalablement au placement peut avoir un effet protecteur sur le déclin cognitif de personnes atteintes de démence lors du placement (wilson et coll., ). l’évaluation de l’efficacité des centres de jour devrait toutefois tenir compte de ces deux types de besoins : les personnes qui cherchent une transition vers le placement et celles qui cherchent à améliorer leur capacité de poursuivre le maintien à domicile. déterminants de l’utilisation puisque le centre de jour ne semble pas convenir à l’ensemble de la population âgée qui présente des incapacités, il est pertinent de connaitre les caractéristiques des clients qui, par leur taux d’utilisation plus élevé, semblent mieux adaptés à ce service. l’état des connaissances sur les déterminants de l’utilisation des centres de jour sera présenté en fonction de quatre types de facteurs les plus fréquemment retrouvés dans les écrits recensés. les trois premiers s’inspirent du modèle d’utilisation des services de santé d’andersen (andersen et newman, ; andersen, ). ces trois premiers groupes de facteurs incluent : • les facteurs prédisposants, des facteurs indépendants de l’état de santé immédiat qui, de façon générale, influencent indirectement l’utilisation de services de santé; • les facteurs de capacité ou facteurs facilitants (en anglais « enabling factors »), qui peuvent être des ressources personnelles ou communautaires qui facilitent l’accès aux services; • les facteurs de besoin qui sont reliés aux symptômes ressentis ou évalués. ils ont une influence directe sur l’utilisation des services de santé. dans le contexte des services de soutien à domicile pour ces trois groupes de facteurs, on tiendra compte des caractéristiques des personnes de soutien principales en plus de celles des personnes âgées. outre le fait que ces personnes ont un rôle important dans la connaissance qu’ont les personnes âgées des services formels et dans l’utilisation qu’elles font de ces services (bass et noelker, ; cotrell et engel, ; strain et blandford, ), certaines études de l’utilisation du centre de jour pour les personnes atteintes de démence considèrent la personne de soutien comme le principal utilisateur du répit offert par le centre de jour. s’inspirant de kosloski, montgomery et youngbauer ( ) et de montoro- rodriquez et collaborateurs ( ), le quatrième groupe de facteurs sera constitué des caractéristiques organisationnelles des services étudiés. les caractéristiques organisation- nelles des services influencent l’expérience du service, une fois que le besoin a été identifié. pour des services de nature discrétionnaire, où la substitution de services est possible, ces facteurs peuvent avoir une influence directe sur la décision d’utiliser ou non un service particulier et de poursuivre son utilisation. on observe dans les écrits une certaine variabilité dans la compréhension du modèle d’andersen par les divers auteurs des études d’utilisation recensées. par exemple, certains placent le revenu familial ou le réseau de soutien social dans les facteurs prédisposants, alors que d’autres les placent dans les facteurs de capacité personnels et communautaires. pour faciliter la lecture, des choix ont été effectués pour présenter chaque type de variable sous un seul type de facteur, peu importe comment ils sont présentés par les chercheurs dont les travaux sont rapportés. À ce sujet, la figure présente le type de variables inclus sous chacun de ces quatre groupes de facteurs dans notre recension des déterminants de l’utilisation du centre de jour. cette figure présente d’abord les facteurs prédisposants, dont l’influence sur l’utilisation est plus distale et termine par les caractéristiques des services, dont l’influence sur l’utilisation est plus immédiate ou proximale. quelques études ont porté sur les déterminants de l’utilisation des centres de jour. puisqu’elles sont peu nombreuses, l’identification des variables susceptibles d’influencer cette utilisation inclura aussi une recension des recherches portant sur des services connexes. les études sur les services de répit incluent souvent une proportion de sujets qui reçoivent leur répit par l’intermédiaire d’un centre de jour et seront donc considérées. les études sur l’utilisation des services à domicile pourraient paraître intéressantes parce que ces services visent le même but que le centre de jour, soit le maintien à domicile des personnes âgées. de plus, plusieurs d’entre elles ont pris en considération des facteurs reliés aux personnes de soutien. toutefois, les caractéristiques des utilisateurs de centre de jour et celles des utilisateurs de soins à domicile diffèrent sur plusieurs points. selon dabelko et balaswamy ( ), les utilisateurs de centre de jour sont généralement plus jeunes et présentent davantage de troubles cognitifs que les utilisateurs de soins à domicile. bien que les capacités fonctionnelles des deux groupes soient similaires selon les échelles d’avq et avd, les utilisateurs de soins à domicile sont hospitalisés plus souvent et utilisent plus d’équipement médical ou d’aides techniques. ces résultats sont cohérents avec le fait qu’il faut certaines capacités de déplacement pour utiliser le centre de jour. ainsi, les résultats de ces études ne seront présentés que lorsqu’ils permettront d’apporter un éclairage sur certains facteurs peu étudiés dans les études sur les centres de jour ou les services de répit. figure : déterminants de l’utilisation du centre de jour ou des services de répit recensés dans les écrits influence sur l’utilisation influence distale influence proximale facteurs prédisposants reliés à la personne âgée : • âge • sexe • éducation • profession • réseau de soutien reliés à la personne de soutien : • âge • sexe • éducation • réseau de soutien autant pour la personne âgée que la personne de soutien : • appartenance culturelle (origine ethnique et religion) • type de lien entre pa et ps (conjoint, enfant, amis ou autre; cohabitation) • croyances et attitudes envers la santé, les services de santé et les responsabilités de soins au sein de la famille facteurs de capacité ressources personnelles et communautaires de la famille : • connaissance des services • revenu familial • source de financement pour les services • existence des services dans le milieu de vie facteurs de besoin de la personne âgée : • santé physique • santé mentale • troubles cognitifs • incapacités fonctionnelles de la personne de soutien : • santé physique, troubles cognitifs ou incapacités fonctionnelles • santé mentale • fardeau • aspects positifs ou négatifs du rôle d’aidant • durée de l’aide • responsabilités concurrentes (famille, emploi) caractéristiques des services du centre de jour : • facilité d’accès et disponibilité au moment opportun • durée et fréquence du service • fiabilité du service • coût du service • transport • type d’activités offertes d’autres services : • présence d’autres ressources formelles qui facilitent la participation au centre de jour interactions entre ces divers facteurs enfin, il faut rappeler que différents aspects du phénomène de l’utilisation, à savoir la prise de contact, l’intensité et la durée, auront des prédicteurs différents (andersen et newman, ). bass et noelker ( ) en fournissent l’illustration dans une étude de l’utilisation des services de soutien à domicile. ils démontrent des différences entre les caractéristiques qui déterminent les probabilités de contact avec les soins à domicile et celles qui sont associées à un plus fort volume de services. les résultats contradictoires de diverses études sur l’utilisation des centres de jour pourraient aussi s’expliquer, au moins en partie, par des définitions différentes de l’utilisation. il importe donc de préciser les aspects du phénomène de l’utilisation qui sont étudiés. dans la présente recension des écrits, on retrouve des études sur chacun des phénomènes d’utilisation des centres de jour : le contact et l’intensité de la participation, ainsi que la durée d’utilisation. chacun de ces phénomènes d’utilisation peut encore être défini de plusieurs façons : • contact : contact à un moment ou un autre du processus de vieillissement à domicile, contact à un moment précis (statut d’utilisateur ou de non-utilisateur à ce moment) ou au cours d’une période de temps donnée. • intensité de la participation : volume de services utilisés pendant l’ensemble de l’épisode d’utilisation du centre de jour, volume de services utilisés pendant une période donnée, ou encore, volume d’utilisation conforme à la recommandation de participation pour une période donnée. dans toutes les études recensées, le volume d’utilisation est présenté en nombre de jours de présence au centre de jour. il serait toutefois possible de mesurer le volume d’utilisation autrement, par exemple en calculant le nombre d’heures passées au centre de jour. • durée d’utilisation : mesurée de façon continue en nombre de mois d’utilisation ou de façon dichotomique par le fait de poursuivre ou non la fréquentation du centre de jour après un certain nombre de mois. les caractéristiques des études recensées, incluant le phénomène d’utilisation étudié, sont présentées au tableau iii, selon cinq catégories : a) études sur l’utilisation des centres de jour auprès d’une clientèle générale (incluant une analyse corrélationnelle des déterminants de l’utilisation des centres de jour); b) études sur l’utilisation des centres de jour auprès d’une clientèle atteinte de démence (incluant une analyse corrélationnelle des déterminants de l’utilisation des centres de jour); c) études sur les déterminants de l’utilisation de services connexes (ex. : répit, divers services incluant les centres de jour, services de loisirs); d) études descriptives sur les raisons d’utilisation ou de non-utilisation des centres de jour ou de services connexes; e) études sur l’utilisation des services à domicile. pour chacune des recherches corrélationnelles portant sur les déterminants de l’utilisation des centres de jour et des services connexes (catégories a à c de la liste ci- dessus), la liste des variables étudiées est présentée à l’annexe ii. tableau iii : caractéristiques des études recensées pour identifier les déterminants de l’utilisation des centres de jour tableau iiia : études des déterminants de l’utilisation des centres de jour pour une clientèle générale auteurs chappell wallace kosloski et coll. henry et capitman lynch et coll. baumgarten et coll. dabelko année ; pays canada États-unis États-unis États-unis États-unis canada États-unis clientèle personnes âgées ( ans +) personnes âgées ( ans +) personnes âgées avec au moins limitations d’avq personnes âgées atteintes de démence ( %) ou non ( %) clientèle âgée avec au moins une incapacité avq ou incapacités avd personnes âgées ( ans +) personnes âgées ( ans +) type d’étude (étude principale) Étude prospective de l’état de santé des participants au cj. corrélationnelle : analyse rétrospective des dossiers du cj corrélationnelle : caractéristiques à t , utilisation dans les mois précédant corrélationnelle corrélationnelle : caractéristiques à t , utilisation dans l’année qui suit essai randomisé corrélationnelle : analyse rétrospective des dossiers. but principal de l’étude vérifier l’effet du centre de jour sur divers indicateurs de santé de la pa. vérifier l’effet du centre de jour sur divers indicateurs de santé de la pa et de sa ps. but de l’étude de l’utilisation (si différent du but principal) comparer les caractéristiques des utilisateurs de cj à d’autres groupes de pa du manitoba. déterminer les caractéristiques des participants qui sont reliées à leur utilisation du cj. identifier les déterminants du contact avec divers types de services, dont le cj. en particulier, vérifier la présence d’interac- tion entre le type de lien pa-ps et les facteurs de besoin. déterminer l’influence de l’approche thérapeutique choisie par le cj sur l’utilisation du service et la satisfaction des ps envers le service. ) identifier les déterminants du contact avec le cj. ) identifier les déterminants de l’intensité d’utilisation du cj. À l’intérieur du groupe expérimental, comparer les caractéristiques des forts et des faibles utilisateurs. ) déterminer les facteurs qui influencent la durée de séjour en centre de jour (dabelko, ). ) comparer les utilisateurs qui abandonnent rapidement à ceux qui pousuivent la partici- pation (dabelko, ). sujets pour l’étude de l’utilisation pa pa dyades pa -ps dyades (pa - ps) ) pa ) pa pa et ps ) pa nouvellement inscrites au cj ) pa qui ont cessé la participation dans les semaines de l’étude phénomène d’utilisation et définition de la variable d’utilisation contact : ) utilisateurs du cj versus utilisateurs de soins à domicile. ) utilisateurs du cj versus population de personnes âgées en général. hybride d’intensité et de durée : nombre de jours de participation entre l’admission et le congé. contact : utilisation ou non du cj dans les mois précédant l’entrevue intensité : nombre moyen de jours utilisés par semaine pendant mois. durée : congé pendant les mois de l’étude, excluant décès. contact : utilisation ou non du cj dans les derniers mois intensité : pour les utilisateurs, nombre de jours d’utilisation en mois intensité : forts utilisateurs : au moins participations en semaines; faibles utilisateurs : moins de participations en semaines. durée : ) nombre de mois d’utilisation entre l’inscription et la fin de l’étude (max. sem.). ) maintien de l’utilisation après semaines versus congé après semaines. tableau iiib : études des déterminants de l’utilisation des centres de jour pour une clientèle atteinte de démence auteurs wells et coll. gottlieb et johnson beiseker et coll. zarit et coll. douglass et visconti montoro-rodriguez et coll. mävall et thorslund année , cite étude de pays australie canada États-unis États-unis États-unis États-unis suède clientèle clientèle atteinte de démence clientèle atteinte de démence clientèle atteinte de démence de type alzheimer clientèle atteinte de démence clientèle atteinte de démence de type alzheimer clientèle atteinte de démence clientèle atteinte de démence type d’étude (étude principale) Étude quasi expérimentale Étude prospective de programmes de jour pour personnes atteintes de démence analyse descriptive, avec sujets volontaires Étude quasi expérimentale avec groupe témoin corrélationnelle : analyse rétrospective des dossiers du addtc Étude corrélationnelle Étude prospective de l’état de santé ps but principal de l’étude mesurer les effets du cj sur divers indicateurs de santé des ps. vérifier l’effet du centre de jour sur divers indicateurs de santé de la ps mesurer les effets du cj sur divers indicateurs de santé des ps. comparer les indicateurs de stress et de santé des ps qui utilisent le cj, selon le statut de cohabitation avec pa. but de l’étude de l’utilisation (si différent du but principal) comparer certains indicateurs des ps qui ont cessé l’utilisation du cj à l’intérieur de mois à ceux qui l’utilisent encore à mois. identifier certaines caractéristiques des ps reliées à l’intensité de l’utilisation connaître les bénéfices perçus de l’utilisation des cj et les barrières à leur utilisation. identifier certaines caractéristiques qui distinguent les utilisateurs des non- utilisateurs. pour le groupe recevant l’intervention, comparer les caractéristiques des brefs utilisateurs à celles des utilisateurs de plus longue durée . déterminer les facteurs qui influencent l’utilisation du centre de jour, parmi la clientèle suivie par l’alzheimer disease diagnostic and treatment center program (addtc). identifier les déterminants de l’intensité d’utilisation du cj. comparer certains indicateurs des ps qui ont cessé l’utilisation du cj à l’intérieur de mois à ceux qui l’utilisent encore à mois. sujets pour l’étude de l’utilisation ps non précisé ps ps pa ps ps phénomène d’utilisation et définition de la variable d’utilisation durée : maintien de l’utilisation versus congé à l’intérieur de mois. intensité : nombre de jours d’utilisation pendant semaines. contact : utilisent ou ont déjà utilisé cj versus ceux qui ne l’ont jamais utilisé. durée : maintien de l’utilisation pendant un an ou plus versus congé à l’intérieur des mois qui suivent l’inscription. contact : utilise le cj dans les mois précédant l’entrevue de suivi qui a lieu un an après l’admission au addtc. intensité : nombre de jours de services utilisés dans le dernier mois. durée : maintien de l’utilisation versus congé à l’intérieur de mois. note : le texte sur les déterminants de l’utilisation du cj fait aussi référence à une étude de conrad, hughes et wang ( ). celle-ci n’est pas incluse dans ce tableau, car l’unité d’analyse n’est pas l’individu, mais le centre de jour. dans cette étude, l’objectif est d’identifier les déterminants du taux de participation pour chacun des centres de jour étudiés. le taux de participation est défini comme le ratio : présences en moyenne par semaine dans chacun des centres / nombre total de présences prévues selon l’inscription. tableau iiic : études des déterminants de l’utilisation de services de répit et autres services connexes auteurs casserta et coll. montgomery et coll. lawton et coll. biegel et coll. kosloski et montgomery. année - , pays États-unis États-unis États-unis États-unis États-unis clientèle clientèle atteinte de démence personnes âgées clientèle atteinte de démence de type alzheimer clientèle atteinte de démence de type alzheimer clientèle atteinte de démence services services de répit services de santé ou de soutien services de répit services de soutien à domicile et hors domicile services de répit type d’étude (étude principale) corrélationnelle : caractéristiques et utilisation à t . corrélationnelle : groupe formé à t , utilisation mesurée à t et un an plus tard. essai randomisé corrélationnelle : caractéristiques à t , utilisation pendant les mois précédents corrélationnelle : caractéristiques à t et utilisation dans les mois précédents. but principal de l’étude déterminer les effets de services de répit sur divers indicateurs de santé des ps. identifier les déterminants de l’utilisation de divers types de services de soutien but de l’étude de l’utilisation (si différent du but principal) connaître la proportion de ps qui connaissent et utilisent les services de répit disponibles dans leur région, ainsi que les déterminants de l’utilisation de ces services. vérifier si l’expérience des ps de personnes atteintes de troubles cognitifs diffère de celle des ps de personnes non atteintes, en particulier quant à l’utilisation des services de soutien formels. À l’intérieur du groupe expérimental, comparer les caractéristiques des différents utilisateurs. identifier les déterminants de l’intensité d’utilisation des services de répit, en particulier déterminer l’influence des attitudes envers les services offerts sur l’utilisation. sujets pour l’étude de l’utilisation ps dyades pa-ps dyades pa-ps ps ps phénomène d’utilisation et définition de la d’utilisation contact : utilisation de services, versus ps qui ne sentent pas encore le besoin de services mais pensent utiliser plus tard ou non-utilisateurs pour d’autres raisons. intensité : nombre de jours d’utilisation de services différents pendant un mois. intensité : nombre d’heures d’utilisation de chacun des services pendant une période d’un an : répit à domicile, en centre d’hébergement, en centre de jour. contact : groupes d’utilisateurs: serv. à domicile seulement serv. hors domicile seulement serv. à domicile et hors domicile aucun service intensité : quantité de répit utilisé dans les mois précédant l’étude. notes : . inclut le répit à domicile, le centre de jour ou des soins à domicile, parce que pour les répondants, les définitions de ces services étaient interchangeables. . inclut le répit à domicile, l’hébergement temporaire et le répit en centre de jour fournis par une des agences à l’étude (les utilisateurs et les non-utilisateurs pouvaient recevoir du répit d’autres sources). . les services hors domicile incluent des services de transport, de centre de jour, de repas de groupe pour personnes âgées. . inclut le répit à domicile et le répit en centre de jour fournis par une des agences à l’étude (les utilisateurs et les non-utilisateurs pouvaient aussi recevoir du répit d’autres sources). tableau iiic : études des déterminants de l’utilisation de services de répit et autres services connexes (suite) auteurs cox cotrell & engel pedlar et coll. kosloski et coll. kosloski et coll. li année pays États-unis États-unis États-unis États-unis États-unis États-unis clientèle clientèle atteinte de démence clientèle atteinte de démence hommes âgés atteints de démence et leurs épouses clientèle atteinte de démence clientèle atteinte de démence ps de personnes âgées ( ans +) avec au moins une limitation d’activité services services de répit services de répit divers services de soutien, dont les services pour ps (répit, éducation) divers services de soutien services de répit types de services de soutien à domicile type d’étude (étude principale) corrélationnelle : caractéristiques à l’admission au prog., utilisation mois plus tard corrélationnelle : caractéristiques et utilisation à t corrélationnelle : caractéristiques à t , utilisation dans les semaines précédentes corrélationnelle : caractéristiques et utilisation à t corrélationnelle : caractéristiques et utilisation à t corrélationnelle : caractéristiques et utilisation à t . but principal de l’étude comparer les caractéristiques des utilisateurs de répit, mois après l’inscription, à celles des non-utilisateurs et de ceux qui ont cessé l’utilisation avant mois vérifier si les membres du réseau informel et les professionnels de la santé agissent comme médiateurs pour faciliter l’utilisation de types de services de répit. identifier les déterminants de l’utilisation des services pour ps, en particulier déterminer l’influence des attitudes envers l’aide formelle sur l’utilisation. vérifier s’il y a interaction entre l’ethnicité et les facteurs de besoin dans les déterminants de l’utilisation des services identifier les déterminants de l’utilisation de répit. pour les non-utilisateurs, vérifier les différences entre ceux qui ont pris des informations sur les services et les autres. identifier les déterminants de l’utilisation des services d’aide, en particulier déterminer l’influence des réseaux sociaux sur l’utilisation. sujets pour l’étude de l’utilisation ps ps ps (épouses) ps ps ps (épouses et filles) phénomène d’utilisation et définition de la d’utilisation contact et durée : utilisateurs de services de répit mois après l’inscription, utilisateurs ayant cessé l’utilisation et non-utilisateurs. contact : utilisent ou non : • centre de jour • répit à domicile • hébergement temporaire contact : utilisent ou non : • aide ménagère • service pour ps • soins personnels • transport contact : utilisent ou non : • centre de jour • répit à domicile, • repas • soins santé à domicile contact : utilisation ou non des services de répit offerts par les agences étudiées. contact : utilisation ou non d’au moins un des services au moment de l’entrevue. notes : . il semble que cela inclut uniquement le répit à domicile, l’hébergement temporaire et le répit en centre de jour fournis par une des agences du programme. . inclut le répit à domicile, l’hébergement temporaire et le répit en centre de jour, obtenu de toute source. . inclut le répit à domicile et le répit en centre de jour fournis par une des agences à l’étude (les utilisateurs et les non-utilisateurs pouvaient recevoir du répit d’autres sources). tableau iiid : études descriptives sur les raisons qui motivent ou limitent l’utilisation de ces services auteurs tourigny et coll., monahan cohen-mansfield et coll. cotrell strain et blandford brodaty année pays canada États-unis États-unis États-unis canada australie clientèle personnes âgées clientèle atteinte de démence personnes âgées clientèle atteinte de démence personnes âgées clientèle atteinte de démence ou de pertes de mémoire services centre de jour service de répit en centre de jour centre de jour services de répit divers services analysés séparément, dont le centre de jour types de services de soutien à domicile, dont le répit but principal de l’étude Évaluer le programme québécois de centre de jour quant aux : similitudes et différences entre les divers centres forces et faiblesses du fonctionnement conditions favorables à la poursuite efficace du programme décrire les caractéristiques des participants (pa et ps) et les raisons pour lesquelles les ps souhaitent la participation de la pa au cj. connaitre les sources d’information sur le cj et les raisons invoquées pour ne pas utiliser le cj. raisons invoquées pour ne pas recourir à des services de répit, ou encore pour débuter et/ou cesser d’utiliser de ces services. raisons invoquées pour ne pas recourir aux services et caractéristiques des répondants associées à divers types de raisons. développer une typologie des personnes de soutien qui n’utilisent pas les services. sujets Échantillon orienté de centres de jour. pa (tous les participants au programme) et % de leurs ps. ps qui avaient pris des informations auprès de cj et n’ont pas utilisé. ps volontaires dyades pa-ps de l’étude manitobaine sur la santé et le vieillissement. ps dont la pa a une démence, tiré d’un échantillon populationnel de ps prennent soin de pa ayant des problèmes variés. notes : . inclut le répit à domicile, l’hébergement temporaire et le répit en centre de jour. tableau iiie : études des déterminants de l’utilisation des services à domicile auteurs grene bass & noelker tennstedt et coll. miller & mcfall bass et coll. crets dabelko et balaswamy année pays États-unis États-unis États-unis États-unis États-unis belgique États-unis clientèle pa ( ans ou +) inscrites au service de gestion de cas (css) de la ville de tuscon en arizona. pa ( ans ou +) de la région de cleaveland, qui nécessitent de l’aide pour au moins un soin personnel et cohabitent avec sa ps. pa ( ans ou +) du massachusetts, identifiées comme fragiles selon le hrca vulnerability index. personnes inscrites à medicare qui ont au moins une limitation dans une activité de vie quotidienne et qui ont identifié une ps. pa admises dans un service de soins à domicile, qui ont utilisé les services pendant au moins jours et ont identifié une ps. pa ( ans et +) qui vivent à domicile, dans la ville de antwerp. personnes âgées de ans et + type d’étude (étude principale) corrélationnelle : caractéristiques des pa à t et utilisation pendant les mois précédents. corrélationnelle : caractéristiques des pa et des ps à t , utilisation pendant les mois précédents. corrélationnelle : type de ps à t et utilisation au même moment. Étude longitudinale : caractéristiques à t et à t (deux ans plus tard), utilisation dans la semaine précédente. corrélationnelle : caractéristiques des pa et des ps à l’inscription, utilisation dans les mois suivants. corrélationnelle : caractéristiques des pa à t et utilisation au même moment. corrélationnelle : caractéristiques des pa à t et utilisation dans les mois précédant l’étude. but principal de l’étude Évaluer comment les ps qui résident avec la pa sont affectées par cette situation. Évaluer l’importance et le rôle des ps secondaire dans les soins aux pa. but: étude de l’utilisation (si différent du but principal) Étudier la relation entre le soutien fourni par le css et le soutien fourni par la famille et les amis, ainsi que les déterminants des types de soutien. identifier les déterminants de l’utilisation des services à domicile. déterminer si la présence d’une ps secondaire influence l’utilisation des services formels. Évaluer les changements dans l’utilisation des services à domicile, identifier les déterminants de l’utilisation à t . identifier les déterminants de l’utilisation des services à domicile données proviennent de l’entrevue initiale avec pa et ps. identifier les déterminants de l’utilisation des services à domicile. comparer les utilisateurs de services à domicile aux utilisateurs de centre de jour sujets pa données proviennent de ps, concernant services utilisés pour la pa. pa et ps pa (parmi les initiales) toujours à domicile à t . pa qui reçoivent des services de santé et pa qui reçoivent services de nature sociale ou aide pour les soins personnels. pa utilisateurs de cj et utilisateurs de soins de santé à domicile phénomène d’utilisation et définition de la variable d’utilisation contact : soutien reçu ou non pour types de soins personnels ou de tâches domestiques. contact et intensité: avoir reçu ou non des services à domicile. nombre d’heures de services à domicile pour tâches. intensité: nombre d’heures par semaine d’aide formelle. contact : utilisation ou non d’aide formelle pour certaines activités de soins personnels ou tâches domestiques. intensité: nombre d’heures de services à domicile utilisées. contact : utilisation ou non de types d’aide (informelle, formelle, commerciale). contact : utilisation ou non de : - centre de jour - soins de santé à domicile. facteurs prédisposants ces facteurs incluent les caractéristiques démographiques comme l’âge et le sexe, qui représentent des facteurs biologiques influençant la probabilité d’avoir besoin des services de santé, ainsi que des mesures de la structure sociale comme le niveau d’éducation, la profession, l’appartenance culturelle, qui donnent une indication de la probabilité de vivre dans un environnement sain et qui influencent la capacité de faire face aux problèmes qui surviennent. ils incluent aussi les croyances sur la santé et la perception de l’utilité des services (andersen, ). personne âgée l’influence de l’âge est variable. pour la clientèle générale, l’âge semble négativement corrélé à l’utilisation du centre de jour (contact : dabelko et balaswamy, ; intensité : henry et capitman, ; durée : dabelko, ), sauf dans l’étude de baumgarten et collaborateurs ( ) où l’on rapporte une association positive entre l’intensité de l’utilisation du centre de jour et l’âge. pour la clientèle atteinte de démence, l’âge semble corrélé positivement à l’utilisation des services de répit (contact : casserta et coll., ; intensité : lawton et coll., ), mais les études qui s’intéressaient spécifiquement au centre de jour n’ont trouvé aucune relation entre ces deux variables (douglass et visconti, ; zarit et coll., b). les différences d’utilisation selon le sexe sont aussi variables. les hommes semblent participer plus intensivement au centre de jour dans deux études auprès d’une clientèle générale (wallace, ; baumgarten et coll., ), alors que les femmes démontrent une participation de plus longue durée dans l’étude de zarit et collaborateurs ( b) auprès d’une clientèle atteinte de démence. au moins trois études n’ont trouvé aucune association significative entre le sexe du participant et l’utilisation du centre de jour (chappell, ; dabelko, ; douglass et visconti, ) le niveau d’éducation semble associé négativement à l’utilisation du centre de jour (contact : chappell, ; durée : dabelko, ). deux autres études n’ont toutefois démontré aucune association significative (baumgarten et coll., ; douglass et visconti, ). la profession peut être vue comme une mesure de la structure sociale (andersen, ) qui peut influencer le besoin de services, de même que la connaissance des services disponibles et leur utilisation. deux études du contact avec le centre de jour ont étudié cette variable. selon chappell ( ), les utilisateurs de centre de jour sont moins nombreux à avoir œuvré dans des postes professionnels ou de gestion que l’ensemble des utilisateurs de services à domicile, alors que dans l’étude de douglass et visconti ( ), aucune association significative n’a été démontrée. le réseau de soutien peut influencer l’utilisation des services de deux façons. il peut augmenter la connaissance des services disponibles (cotrell et engel, ; miller et mcfall, ), favoriser le rappel des rendez-vous et stimuler l’utilisation des services. il est aussi possible que les personnes âgées qui ont un plus grand réseau de soutien informel utilisent moins de services formels, car leurs besoins peuvent être davantage comblés par leur réseau informel. cette dernière hypothèse (diminution de l’utilisation) ne semble vérifiée que dans le cas de l’utilisation de services à domicile (bass, looman et ehrlich, ; crets, ; greene, ). pour ce qui est de l’utilisation des centres de jour, bien que le fait de vivre seul ne semble pas associé à l’utilisation du centre de jour (baumgarten et coll., ; douglass et visconti, ; lynch et coll., ; wallace, ), d’autres indicateurs de la présence d’un réseau ont été corrélés à une plus forte intensité d’utilisation du centre de jour, soit : la présence d’une personne de soutien (baumgarten et coll., ), le fait d’avoir des enfants (wallace, ) et d’avoir un conjoint (wallace, ). ce serait vrai en particulier pour les hommes mariés (wallace, ). une seule étude démontre une association négative entre la présence d’un conjoint et l’intensité d’utilisation du centre de jour (lynch et coll., ). de plus, dabelko ( ) observe une durée d’utilisation plus grande pour les personnes mariées. personne de soutien l’âge de la personne de soutien est associé positivement à l’intensité de la participation au centre de jour dans l’étude de baumgarten et collaborateurs ( ). par contre, il est associé négativement à la durée d’utilisation dans deux études (henry et capitman, ; zarit et coll., b). dans l’étude de lawton et collaborateurs ( ), l’âge de la personne de soutien est associé positivement à l’utilisation du répit en hébergement temporaire, mais pas aux autres formes de répit. les études dont la variable dépendante était un ensemble indifférencié de services de soutien n’ont pas démontré d’association entre l’âge de la personne de soutien et l’utilisation de ces services (casserta et coll., ; cotrell et engel, ; kosloski et coll., ; li, ; pedlar et biegel, ). le sexe de la personne de soutien ne semble pas associé à l’utilisation du centre de jour ou des services de répit. dans l’ensemble des études recensées, seuls baumgarten et collaborateurs ( ) ont observé une association significative. dans leur étude, l’intensité de la participation au centre de jour semble plus grande lorsque la personne de soutien est une femme. l’éducation de la personne de soutien est négativement corrélée à l’intensité d’utilisation du centre de jour dans l’étude d’henry et capitman ( ) et positivement à la durée d’utilisation dans l’étude de zarit et collaborateurs ( b). deux autres études n’ont toutefois démontré aucune association significative (baumgarten et coll., ; montoro- rodriguez et coll., ). le réseau de soutien de la personne de soutien peut aussi influencer l’utilisation des services formels de plusieurs façons. la présence d’un tel réseau peut diminuer le besoin d’aide de la part des services formels. d’ailleurs, dans l’étude de miller et mcfall ( ), la perte d’une personne de soutien secondaire augmente de , fois les chances d’utiliser des services à domicile. les personnes de soutien qui n’utilisaient pas les services de répit (cox, ; kosloski et coll., ) et en particulier, celles qui ne les utilisaient pas parce qu’elles n’en sentaient pas encore le besoin (casserta et coll., ) étaient légèrement plus satisfaites envers leur réseau de soutien informel (cox, ; casserta et coll., ) ou étaient plus nombreuses à rapporter la présence d’un autre aidant pouvant prendre la relève en cas de besoin (kosloski et coll., ). cette association négative entre le réseau de soutien de l’aidant et l’utilisation de services formels ne semble pas observée dans le cas du centre de jour. d’autres chercheurs ont observé que le réseau de soutien peut favoriser la connaissance des services et des attitudes plus positives envers leur utilisation. au moins deux études rapportent une corrélation positive entre la présence de personnes de soutien secondaires et l’utilisation des services à domicile (bass et noelker, ; tennstedt, mckinlay et sullivan, ). l’influence des soutiens secondaires peut différer selon qu’il s’agit d’amis ou de membres de la famille. les proches aidants qui rapportent recevoir le soutien d’amis plutôt que d’autres membres de la famille pour les soins apportés à la personne âgée utilisaient davantage de services formels (li, ), suggérant que les amis aideraient davantage à établir des ponts entre les proches aidants et le réseau formel d’aide. pour l’utilisation du centre de jour par une clientèle atteinte de troubles cognitifs, l’influence d’un membre du réseau informel ou d’un professionnel sur la personne de soutien semble importante dans la décision d’utiliser ou non le centre de jour et d’autres services de répit (beiseker et coll., ; cotrell et engel, ). selon cotrell et engel ( ), l’influence d’un membre du réseau informel paraît d’ailleurs plus importante pour l’utilisation du centre de jour que pour les autres formes de répit. enfin, la satisfaction envers le réseau de soutien informel a aussi été associée à l’utilisation de services de soutien à l’extérieur du domicile, alors que les personnes de soutien qui rapportent une plus faible satisfaction envers leur réseau informel se retrouvent davantage chez les non- utilisateurs et chez les utilisateurs de services à domicile seulement (biegel, bass, schulz et morycz, ). soulignons que le nombre de personnes vivant sous le toit de la personne de soutien n’a pas été associé à l’utilisation du centre de jour ou des services de répit dans les études recensées (dabelko ; ). cette variable semble inclure une trop grande variété de situations différentes (par exemple : conjoint ou adolescents en âge d’apporter du soutien, ou encore, enfants en bas âge ou autres personnes dépendantes) pour pouvoir servir de proxy pour mesurer un soutien à l’aidant. personne âgée et personne de soutien l’appartenance culturelle peut influencer les croyances sur la santé et sur l’acceptabilité de solliciter de l’aide pour les soins d’une personne âgée, et en particulier de recourir à des services d’aide formelle pour faciliter le maintien à domicile. elle peut aussi influencer le niveau socioéconomique et la capacité de payer les services le cas échéant. peu de recherches ont exploré cette variable sauf pour ce qui est de la différence entre noirs, hispaniques et blancs aux États-unis. en ce qui concerne l’utilisation du centre de jour, l’intensité d’utilisation du centre de jour serait plus grande chez les personnes d’origine afro-américaine (henry et capitman, ; montoro-rodriguez et coll., ) ou hispaniques (montoro-rodriguez et coll., ). toutefois, les durées d’utilisation seraient plus courtes pour la clientèle noire (henry et capitman, ). cette association n’est pas observée dans l’étude de zarit et collaborateurs ( b), où au contraire, les blancs étaient proportionnellement plus nombreux dans le groupe des brefs utilisateurs. toutefois, cette association n’est plus significative dans les analyses multivariées qui contrôlaient les variables suivantes : sexe de la personne âgée, lien avec la personne de soutien, éducation de la personne de soutien, nombre d’incapacités et nombre de problèmes de comportement de la personne âgée, fardeau et bien-être psychologique de la personne de soutien. les résultats des études de dabelko ( ; ) sont contradictoires selon la variable dépendante considérée (durée d’utilisation en mois ou mesure dichotomique de la durée: congé ou non à l’intérieur de semaines de l’inscription). dans le contexte canadien, chappell ( ) a observé qu’une moins grande proportion de personnes nées à l’extérieur du canada utilisait un centre de jour. le type de lien entre la personne âgée et sa personne de soutien : il semble que la préférence pour certains types de services varie selon que la personne de soutien soit le conjoint, un enfant qui cohabite avec la personne âgée, ou une autre personne qui ne cohabite pas avec la personne de soutien (cotrell et engel, ). cela pourrait expliquer que plusieurs études sur des services de répit non différenciés n’aient pas démontré d’association significative entre cette variable et l’utilisation des services (biegel et coll., ; cox, ; kosloski et coll., ; lawton et coll., ). certains auteurs rapportent tout de même que les personnes de soutien qui sont le conjoint de la personne âgée utilisent moins de services de répit. pour les conjoints surtout, la présence de soutiens secondaires semble avoir un rôle important dans l’utilisation du répit (cotrell et engel, ; li, ). des conjoints ont rapporté qu’ils n’auraient jamais utilisé les services de répit si leurs enfants ne les avaient pas encouragés à le faire (cotrell et engel, ). dans l’étude de caserta et collaborateurs ( ), les conjoints sont plus nombreux dans le groupe de personnes de soutien qui se disent pas encore prêtes à utiliser les services de répit, mais le feraient si le besoin devenait plus important. selon kosloski et montgomery ( ), les facteurs de besoin contribuaient davantage à prédire l’utilisation du centre de jour lorsque la personne de soutien est le conjoint, ce qui semble cohérent avec l’observation précédente de casserta et collaborateurs. l’influence du type de lien sur l’utilisation du centre de jour est aussi variable. dans une étude après d’une clientèle générale, l’intensité d’utilisation plus élevée est associée au fait que la personne de soutien soit le conjoint (baumgarten et coll., ), alors dans une étude auprès d’une clientèle atteinte de démence, gottlieb et johnson ( ) observent le contraire. par ailleurs, la durée d’utilisation semble plus courte lorsque la personne de soutien est le conjoint, tant dans l’étude d’henry et capitman ( ) qui contient % de clients atteints de démence que dans l’étude de zarit et collaborateurs ( b) auprès d’une clientèle atteinte de démence. ceci pourrait s’expliquer par la différence dans le but de la fréquentation du centre de jour pour les divers groupes de clients, le répit étant le but le plus souvent recherché pour la clientèle atteinte de troubles cognitifs. selon cotrell ( ), les enfants corésidants indiquent une préférence pour le centre de jour plutôt que d’autres formes de répit, tandis que les conjoints qui ont besoin de répit semblent préférer le répit à domicile. cette préférence pourrait être associée à une plus faible utilisation des centres de jour par les conjoints de personnes atteintes de troubles cognitifs. selon gottlieb et johnson ( ), les enfants acceptent peut-être mieux l’idée d’un programme de groupe, ou encore, ils ont davantage besoin de répit que les conjoints, étant donné les responsabilités familiales et de travail concomitantes à leur rôle d’aidant. les croyances et attitude envers l’utilisation des services : outre les études sur les raisons de l’omission de se présenter discutées précédemment, nous n’avons recensé aucune recherche sur les attitudes envers l’utilisation du centre de jour par les personnes âgées elles-mêmes. les études des croyances et les attitudes des personnes de soutien envers le rôle d’aidant et envers l’utilisation des services sont plus nombreuses. la confiance envers les services de la communauté pour prendre soin d’un conjoint a été associée positivement à l’utilisation de services destinés aux proches aidants (pedlar et biegel, ). selon kosloski et collaborateurs ( ), les personnes qui ont une plus grande perception que c’est leur devoir d’aider leur conjoint ou leur parent vieillissant sont moins nombreuses à utiliser les services de répit. celles qui perçoivent une plus grande utilité aux services de répit (kosloski et montgomery, ) et aux centres de jour (montoro-rodriguez et coll., ) sont plus nombreuses à utiliser ces services. l’attitude envers l’utilisation du centre de jour et de l’aide formelle peut être influencée positivement par la participation à un groupe d’éducation pour les personnes de soutien (robinson et yates, ). par ailleurs, selon beiseker et collaborateurs ( ), les utilisateurs sont plus nombreux que les non-utilisateurs à percevoir dans leur fréquentation du centre de jour des bénéfices pour la personne âgée, en plus des bénéfices pour la personne de soutien. l’utilisation antérieure de services similaires indique une attitude positive à leur égard et la maîtrise des barrières à l’utilisation, tant en ce qui a trait à la connaissance qu’à l’accessibilité au service (miller et mcfall, ). ainsi, l’utilisation du centre de jour pour un épisode antérieur de soins pourrait faciliter l’utilisation lors de l’apparition d’un nouveau besoin. toutefois, l’effet pourrait être inverse si l’épisode antérieur s’est soldé par la non- participation parce que la personne n’a pas aimé la première expérience. les résultats des recherches effectuées à ce jour sont incomplets à ce sujet. douglass et visconti ( ) ont observé que l’utilisation du centre de jour antérieure à l’évaluation initiale est le plus important prédicteur de son utilisation lors de l’entrevue de suivi un an plus tard. henry et capitman ( ) ont aussi observé que les personnes qui utilisaient le centre de jour depuis plus longtemps avaient moins de probabilité de cesser l’utilisation à l’intérieur des six prochains mois. il s’agit ici d’une utilisation continue et non d’une utilisation pour un épisode antérieur. l’utilisation de services de répit autres que le centre de jour peut donner une indication des croyances positives des personnes de soutien quant aux services d’aide formelle et pourrait être associée à une plus grande utilisation du centre de jour. par contre, l’utilisation de ces services pourrait aussi diminuer le besoin du répit offert par le centre de jour (substitution de services). dans deux études qui ont examiné cette relation, l’utilisation antérieure de soutien formel n’a pas été associée à l’utilisation des nouveaux services de répit proposé par leur projet (cox, ; lawton et coll., ), alors que kosloski et montgomery ( ) ont observé une association positive entre l’utilisation d’aide à domicile et l’utilisation des services de répit, infirmant l’hypothèse de substitution de service. cette hypothèse est aussi infirmée par beiseker et collaborateurs ( ) qui observent que les utilisateurs de centre de jour ont aussi recours en moyenne à plus d’autres services de répit et de soutien à domicile que les non-utilisateurs. facteurs de capacité personnels ou communautaires ce sont encore une fois des facteurs indépendants de l’état de santé immédiat qui, de façon générale, facilitent l’accès aux services. ils incluent la connaissance des services, les ressources financières ou l’accès à une assurance-santé, de même que la disponibilité des services dans la communauté où vit la personne. plusieurs auteurs considèrent les ressources à la disposition de la famille, sans distinguer les ressources des personnes âgées et de celles des personnes de soutien. il va de soi que la connaissance du service est préalable à son utilisation. la méconnaissance au sujet de la disponibilité du service est rapportée comme raison de non- utilisation du répit (beisecker et coll., ; strain et blandford, ) et l’influence de cette variable sur le contact avec un service de répit ou un centre de jour est décrite dans deux études corrélationnelles (cotrell et engel, ; montoro-rodriguez et coll., ). cette connaissance peut être influencée par plusieurs facteurs. dans l’étude de strain et blandford ( ), les personnes de soutien de sexe masculin et celles qui vivent à l’extérieur des grands centres urbains étaient plus nombreuses à ne pas connaître le service de centre de jour. de plus, comme discuté plus haut, la présence d’un réseau de soutien favorise la connaissance des services d’aide. de façon étonnante, le revenu familial n’est pas associé à l’utilisation du centre de jour (beiseker et coll., ; dabelko, ; henry et capitman, ; kosloski et montgomery, ; lynch et coll.; ; zarit et coll., b), même dans le contexte américain où les coûts de ces services sont parfois élevés. on retrouve une exception dans l’étude de montoro-rodriguez et collaborateurs ( ) où le revenu de la personne de soutien est associé à une plus grande intensité d’utilisation du centre de jour. il faut noter que cette variable n’était pas significative avant l’ajout dans le modèle statistique d’un ensemble de variables reliées à la connaissance du service, à son attrait et à la facilité d’utilisation. de plus, leur analyse subséquente incluant des variables d’interaction démontre que ce facteur est plus important pour les personnes d’origine afro-américaine. source de financement des services : il semble qu’aux États-unis les personnes à faibles revenus soient admissibles à différents programmes qui subventionnent, au moins en partie, les coûts des services. nous avons recensé trois études mesurant l’effet de cette variable sur la durée de l’utilisation du centre de jour. le fait de pouvoir bénéficier de financement extérieur pour défrayer les coûts du centre de jour est associé à une plus longue utilisation du centre de jour dans l’étude de wallace ( ). dans les études de dabelko, un financement privé (la personne défraie le coût) est associé à une plus grande probabilité de cesser l’utilisation à l’intérieur des quatre premières semaines suggérant que le manque de ressources financières peut limiter l’accès au service (dabelko ). toutefois, lorsque l’analyse porte sur la durée de séjour (variable continue), le financement public est associé à une plus courte utilisation (dabelko, ). une explication possible est que le critère d’accès au financement public retarde l’utilisation du centre de jour jusqu’au moment où les incapacités sont déjà très grandes. le placement en institution ne peut alors être retardé aussi longtemps que pour les personnes qui utilisent le centre de jour à un stade plus précoce. enfin, la disponibilité du service dans sa zone de résidence (zarit et coll., ) ou dans l’ensemble des services offerts par une health maintenance organization (lynch et coll., ) influence bien sûr l’utilisation du centre de jour. si on suggère que les centres de jour sont moins présents en milieu rural qu’en milieu urbain (strain et blandford, ), l’étude de montoro-rodriguez et collaborateurs ( ), la seule à tester cette variable parmi les études recensées, n’a pu démontrer d’association entre l’utilisation du centre de jour et la densité de population de la zone de résidence. facteurs de besoin ces facteurs influencent directement l’utilisation des services. dans le cas des centres de jour, ils incluent les problèmes de santé physique ou de santé mentale, ainsi que la présence de troubles cognitifs et d’incapacités fonctionnelles. pour les personnes de soutien, il faudra aussi considérer les facteurs reliés à ce rôle comme la durée de l’aide et le fardeau ressenti, ainsi que les responsabilités concommitantes qui pourraient augmenter le besoin de répit comme le fait d’occuper un emploi . personne âgée la participation au centre de jour pourrait être limitée par un état de santé trop fragile, indiqué par un nombre élevé de maladies, un recours fréquent à l’hospitalisation ou par un nombre élevé de jours d’hospitalisation. si plusieurs indicateurs de problèmes de santé physique ont été associés avec une plus grande utilisation des soins à domicile (bass et noelker, ; bass et coll., ), les résultats ne sont pas aussi consistants pour ce qui est de l’utilisation des centres de jour. plusieurs auteurs n’ont démontré aucune relation significative (dabelko, ; ; douglas et visconti, ; henry et capitman, ; wallace, ). une mauvaise santé a été associée à une plus faible probabilité d’utiliser le centre de jour (lynch et coll., ), mais pas à l’intensité d’utilisation pour le groupe d’utilisateurs. la présence de diabète a été associée à une plus grande intensité d’utilisation, alors que la présence de troubles urinaires a été associée à une plus faible intensité d’utilisation (lynch et coll., ). un plus grand risque nutritionnel a été associé à l’utilisation du centre de jour sur une plus courte période (dabelko, ). le fait d’avoir été hospitalisé dans les , ou mois précédant l’étude n’a pas été associé à l’utilisation du centre de jour (dabelko, ; ; henry et capitman, ; lynch et coll., ). la santé mentale : en ce qui a trait à l’intensité d’utilisation, selon baumgarten et collaborateurs ( ), les plus grands utilisateurs de centres de jour présenteraient des scores de dépression légèrement supérieurs à ceux des faibles utilisateurs, mais des scores d’anxiété légèrement inférieurs à ces derniers. pour ce qui est de la durée d’utilisation, dans les études de dabelko, la présence de dépression et d’anxiété est associée à une plus grande probabilité de cesser l’utilisation à l’intérieur des premières semaines suggérant que ces problèmes peuvent nuire à l’adaptation au centre de jour (dabelko, ). toutefois, lorsque l’analyse porte sur la durée de séjour (variable continue), la présence de dépression et d’anxiété est associée à une plus longue utilisation (dabelko, ), suggérant que ceux qui arrivent à s’y adapter maintiennent l’utilisation. ces variables ne sont pas étudiées dans les travaux sur l’utilisation des centres de jour par la clientèle atteinte de démence. les troubles cognitifs : l’utilisation de services de répit (contact : cox, ; cotrell et engel, ) et de centre de jour (contact : dabelko et balaswamy, ; intensité : baumgarten et coll., ; contact et intensité : lynch et coll., ) serait positivement associée à la présence d’atteinte cognitive chez la personne âgée. il faut souligner aussi deux études qui n’ont pas observé d’association significative (contact : kosloski et montgomery, ; intensité : wallace, ). dans une étude sur l’utilisation de services de santé ou de soutien, les personnes avec ou sans troubles cognitifs utilisent le même nombre de jours de services, mais les personnes avec troubles cognitifs utilisent plus certains types de services. entre autres, les personnes atteintes de démence de type alzheimer utilisent davantage le centre de jour (intensité : montgomery, kosloski et borgotta, - ). toutefois, à l’intérieur de la clientèle atteinte de troubles cognitifs, les personnes ayant plus de problèmes de comportement, utilisent moins le centre de jour (intensité : lawton et coll., ; durée : zarit et coll., b) et davantage le répit à domicile (intensité : lawton et coll., ). les incapacités fonctionnelles : dans les études auprès d’une clientèle générale, les observations sont contradictoires. en ce qui concerne le contact avec le centre de jour, chappell ( ) rapporte que les utilisateurs de centre de jour présentent plus d’incapacités fonctionnelles que les utilisateurs de soins à domicile alors que dabelko et balaswamy ( ) n’observent pas de différence entre les deux groupes. en ce qui a trait à l’intensité d’utilisation, dans au moins deux études, on note que les plus forts utilisateurs de centre de jour ont aussi plus d’atteintes fonctionnelles (baumgarten et coll., ; lynch et coll., ). cette variable ne semble pas prédire la durée d’utilisation (dabelko, ; ; henry et capitman, ). dans les études auprès de personnes démentes, on observe généralement que les personnes qui présentent plus d’incapacités physiques ou d’atteintes fonctionnelles utilisent davantage les services de répit en général (brodaty et coll. ; casserta et coll. ; cotrell et engel, ; kosloski et coll., ; ). en ce qui concerne le centre de jour toutefois, zarit et collaborateurs ( b) rapportent que les personnes qui ont plus d’atteintes fonctionnelles sont plus nombreuses dans le groupe ayant une faible durée d’utilisation. pour ce qui est du contact avec le centre de jour, biegel et collaborateurs ( ) constatent que les personnes qui ont moins d’incapacités utilisent davantage le répit hors du domicile comme le centre de jour alors que celles qui présentent plus d’incapacités sont plus nombreuses chez les utilisateurs de répit à domicile et chez les non-utilisateurs. personne de soutien la personne de soutien qui est elle-même affectée par un problème de santé, que ce soit un problème de santé physique, un trouble cognitif ou une diminution de sa capacité fonctionnelle sera davantage limitée dans sa capacité d’aider la personne âgée. il semble donc logique que cette personne de soutien ait un plus grand besoin de services que celle qui est en excellente santé. par contre, ses problèmes de santé peuvent limiter sa capacité à rechercher de l’aide pour la personne âgée qu’elle soutient (boucher, renvall et jackson, ). toutefois, lorsqu’un premier contact avec des services de soutien a eu lieu, les intervenants peuvent leur recommander davantage de services jugeant que leur niveau de besoin est supérieur. À ce jour, les études sur l’utilisation des centres de jour (douglass et visconti, ; kosloski et montgomery, ) ou des services de répit (kosloski et coll., ; lawton et coll., ; li, ; pedlar et biegel, ) qui ont considéré la santé physique de la personne de soutien n’ont pas démontré de relation significative. le bien-être psychologique des personnes de soutien est davantage étudié. les indicateurs de bien-être psychologique ont démontré des effets variables. on a observé que les personnes de soutien plus anxieuses et présentant plus de symptômes dépressifs étaient plus nombreuses à cesser l’utilisation des services de répit en moins de mois (cox, ) et plus nombreuses à cesser l’utilisation du centre de jour dans les trois premiers mois en raison de l’hébergement du proche (wells et coll., ). dans l’étude de mävall et thorslund ( ), un indicateur de dépression plus élevée chez la personne de soutien est aussi relié à une plus courte utilisation du centre de jour, mais seulement pour les personnes de soutien qui ne cohabitent pas avec la personne aidée. par contre, dans d’autres études, un plus haut niveau de dépression de la personne de soutien est associé à une utilisation plus intense des services de répit (lawton et coll., ) et à l’utilisation du centre de jour sur une plus longue période (zarit et coll., b). on retrouve aussi deux études où aucune association significative n’est démontrée (douglass et visconti, ; montoro-rodriguez et coll., ). le fardeau de la personne de soutien pourrait influencer l’utilisation du centre de jour de deux façons. un plus grand fardeau pourrait indiquer un plus grand besoin de répit et augmenter l’utilisation du centre de jour. toutefois, la personne de soutien plus fatiguée n’a peut-être pas l’énergie pour stimuler la personne à se rendre au centre de jour, ce qui pourrait se traduire par une plus faible utilisation pour certains usagers. les recherches à ce jour ont démontré que le fardeau est généralement positivement corrélé à l’utilisation de services de répit (casserta et coll., ; cox, , lawton et coll., ) et à une utilisation plus intense du centre de jour (baumgarten et coll., ) pour une clientèle générale. dans les études limitées à l’utilisation du centre de jour par la clientèle atteinte de démence, la relation semble à l’inverse de celle observée par baumgarten et collaborateurs selon biegel et collaborateurs ( ), les utilisateurs de centre de jour ont un moins grand fardeau émotionnel (sentiments d’impuissance, de dépression, de culpabilité, de craintes pour le futur et d’isolement reliés au rôle d’aidant) par rapport aux utilisateurs de répit à domicile et aux non-utilisateurs. de même, zarit et collaborateurs ( b) ont trouvé qu’un plus fort sentiment de captivité relié au rôle de personne de soutien est associé à une plus courte utilisation du centre de jour. dans l’étude de mävall et thorslund ( ) auprès d’une clientèle atteinte de démence, trois indicateurs de fardeau (sentiment de captivité relié au rôle, inquiétudes et sentiment de surcharge) sont aussi reliés à une plus courte utilisation du centre de jour, mais seulement pour les personnes de soutien qui ne cohabitent pas avec la personne aidée. une explication possible serait que quelques heures de centre de jour par semaine n’apporteraient pas une diminution suffisante des inquiétudes reliées à la supervision nécessaire à la personne atteinte de démence. les personnes de soutien qui ne cohabitent pas avec la personne âgée se tourneraient plus rapidement vers des ressources qui peuvent apporter une supervision /h sur . les aspects positifs ou négatifs du rôle de personne de soutien ont aussi été étudiés. les personnes de soutien qui ont choisi d’exercer ce rôle sont associées à une utilisation plus intense du centre de jour (henry et capitman, ). les personnes de soutien pour lesquelles ce rôle apporte peu de bénéfices sont plus nombreuses à cesser d’utiliser les services de répit à l’intérieur de mois (cox, ), possiblement en raison de l’hébergement de leur proche. durée de l’aide : dans une étude, les personnes de soutien qui exercent ce rôle depuis moins d’un an étaient plus nombreuses à cesser l’utilisation du centre de jour dans une période de mois (henry et capitman, ). trois autres études n’ont démontré aucune association avec l’utilisation du centre de jour (zarit et coll., b) ou des services de répit (biegel et coll., ; pedlar et biegel, ). responsabilités concomitantes : les personnes de soutien qui occupent un emploi pourraient avoir davantage besoin du centre de jour ou d’autres services de répit, surtout si leur proche âgé ne peut être laissé seul durant la journée. selon cotrell et engel ( ), les personnes de soutien qui occupent un emploi ont utilisé davantage de services de répit. toutefois, cinq autres études qui ont considéré ce facteur n’ont pas démontré d’association significative avec l’utilisation du centre de jour (henry et capitman, ) ou des services de répit (biegel et coll., ; cox, ; kosloski et coll., ; li, ). caractéristiques des services les caractéristiques des services peuvent faciliter l’accès à un service particulier, une fois le besoin d’aide identifié ou favoriser la poursuite de l’utilisation après le contact initial. pour le centre de jour, ils incluent la facilité d’accès et la disponibilité du service au moment opportun, le coût du service pour l’utilisateur, la durée et la fiabilité du service, le transport, le type d’activités offertes, ainsi que la présence d’autres services qui peuvent faciliter l’utilisation du centre de jour. la facilité d’accès et la disponibilité du service au temps opportun seront surtout fonction des critères d’admissibilité et des listes d’attente. pour ce qui est des critères d’admissibilité, plusieurs auteurs mentionnent un accès au centre de jour plus limité pour les personnes qui présentent des problèmes de comportement ou d’incontinence (beisecker et coll., ; lawton et coll., ; mace et rabins, ; tourigny et coll., ; wallace, ). aucune des études recensées ne discute de l’impact des listes d’attente, bien qu’en toute logique, leur présence limitera l’accès aux services. ceci s’explique possiblement par le fait que la plupart des études sont américaines, et qu’aux États-unis, les centres de jour ont rarement des listes d’attente. au contraire, ils semblent avoir de la difficulté à remplir toutes les places disponibles (cox et coll., ; kosloski et coll., ; weissert et coll., ). enfin, l’obligation d’utiliser le service de façon régulière plutôt que selon les besoins a aussi été rapportée comme raison de non-utilisation des services de répit (lawton et coll., ). la durée et la fréquence des activités : pour une clientèle générale, une plus longue durée d’utilisation du centre de jour a été associée au fait d’être inscrit à raison de trois jours par semaine. une explication avancée est que la participation à raison d’une ou deux journées par semaine ne serait pas suffisante pour incorporer le centre de jour dans les habitudes de la personne âgée, alors qu’une participation initiale de plus de trois jours pourrait provoquer un changement trop brusque de routine, à la fois pour le participant et sa personne de soutien (wallace, ). cette association n’est pas retrouvée dans les études de dabelko ( ; ) auprès d’une clientèle générale, ni dans celle de mävall et thorslund ( ) auprès d’une clientèle atteinte de démence. nous n’avons pas recensé d’analyse de l’utilisation du centre de jour en fonction de la durée des services offerts chaque jour. toutefois, certaines personnes mentionnent comme raison de non-utilisation le fait que les heures d’ouverture ne conviennent pas aux besoins (beiseker et coll., ; lawton et coll. ). la possibilité d’obtenir une quantité suffisante de répit par le centre de jour a aussi été associée à son utilisation par la clientèle atteinte de démence (montoro- rodriguez et coll., ). la fiabilité du service : dans l’étude de kosloski et coll. ( ), les personnes de soutien qui accordaient une plus grande importance à la régularité et à la fiabilité des heures de répit étaient plus nombreuses à utiliser les services de répit dispensés par les agences étudiées, incluant le centre de jour ou du répit à domicile. le coût du centre de jour : dans l’étude de dabelko ( ), un coût moyen plus élevé (coût réel pour le client tenant compte des subventions possibles) est observé chez les personnes qui quittent le centre de jour dans les quatre premières semaines de fréquentation, suggérant que le coût peut être un frein à l’utilisation. henry et capitman ( ) observent au contraire qu’un coût plus élevé pour les services du centre de jour comme tel serait associé à une utilisation plus intense, toutefois, un coût plus élevé pour les services auxiliaires et une insatisfaction par rapport aux coûts amèneraient une utilisation moins intense. les coûts moyens présentés dans cette étude semblent beaucoup plus élevés que ceux observés dans l’étude de dabelko, mais les informations fournies ne sont pas suffisamment détaillées pour saisir l’origine de ces différences et les interprétations possibles. s’il s’agit du coût total du service et non du coût pour le client, il est possible qu’un service plus coûteux soit aussi un service de plus grande qualité. dans le contexte québécois de gratuité des soins de santé, seuls les coûts des services auxiliaires (ex. : repas, transport) seront pertinents. il est tout de même possible que, pour certains, ces frais soient une barrière à l’utilisation (gutman et coll., a). certains centres de jour peuvent avoir une politique de paiement flexible qui permet aux plus démunis de participer aux activités sans acquitter de frais de repas ou de transport. les difficultés de transport ont été rapportées comme barrières à l’utilisation du centre de jour (beisecker et coll., ; lawton et coll., ). l’effet positif de cette variable sur l’utilisation du centre de jour est démontré dans les deux études recensées à ce sujet (intensité : montoro-rodriguez et coll., , durée : dabelko, ). le type d’activités offertes peut aussi influencer l’utilisation du centre de jour. henry et capitman ( ) se sont attardés à l’influence du type d’activités offertes aux personnes âgées sur l’intensité et la durée de participation. ils ont trouvé que les participants à des programmes qui mettent l’accent sur le maintien de la santé utilisent moins intensément le centre de jour et sont plus susceptibles de cesser la participation que ceux qui participent à des programmes qui mettent l’accent sur le répit ou sur les activités de stimulation et de croissance. gitlin et collaborateurs ( ) ont analysé l’effet d’une intervention auprès des aidants (un suivi d’en moyenne une heure par mois) pour aborder leur préoccupation. ce suivi a permis une amélioration du taux d’utilisation du centre de jour par la personne aidée, surtout par une diminution de l’abandon précoce de la participation. conrad, hughes et wang ( ) ont étudié l’effet des activités offertes par divers centres de jour sur les taux de participation moyens de ces centres. leur unité d’analyse est donc le centre de jour et non l’individu. les centres qui offraient à la fois des services thérapeutiques (ergothérapie, physiothérapie, orthophonie), de l’entraînement aux soins personnels et des activités récréatives thérapeutiques (art, musique) et moins d’éducation aux familles obtenaient de plus forts taux de participation. dabelko ( ; ) a inclus dans ses études plusieurs variables reliées à l’environnement des services : taille du centre de jour, ratio personnel/personnes âgées, diversité du personnel, espace disponible, localisation du programme dans une institution de soins de longue durée, centre qui accepte ou non la clientèle ayant des troubles cognitifs. aucune de ces variables n’a démontré d’association avec l’utilisation du centre de jour. puisque, dans le domaine du soutien à domicile, diverses agences ou organisations travaillent de concert pour offrir aux personnes âgées l’ensemble des services que leur condition nécessite (griffin, ; agence de la santé et des services sociaux de montréal, ), la présence d’autres services de soutien à domicile et les caractéristiques de ces services, peuvent aussi faciliter l’utilisation des centres de jour. l’influence de ces services a été très peu étudiée. on retrouve un exemple dans l’étude de douglass et visconti ( ) auprès de la clientèle de l’alzheimer’s disease diagnostic and treatment center program (addtc), où le fait d’être référé au centre de jour par le personnel du addtc est, avec l’utilisation du centre de jour avant l’inscription au programme addtc, le seul prédicteur significatif du fait d’avoir recours au centre de jour un an plus tard. certains auteurs ont émis des recommandations pour améliorer l’organisation des services offerts en centre de jour de façon à en augmenter l’utilisation. parmi ces éléments d’organisation dont l’effet sur l’utilisation du centre de jour mériterait d’être étudié, mentionnons entre autres : une gestion de cas plus intensive des participants à risque de se désister (dabelko, ), un suivi individualisé pour une meilleure intégration au groupe des personnes qui ont des problèmes de santé mentale (dabelko, ), la possibilité d’offrir non seulement le transport « de porte à porte (door to door) », mais un service « indoor to door », soit une aide à l’intérieur du domicile pour aider la personne âgée à se préparer pour le centre de jour (dabelko, ). interaction entre divers facteurs quelques rares études ont recherché la présence d’interactions entre les divers facteurs qui expliquent l’utilisation du centre de jour ou d’autres services de soutien. celles qui l’ont fait ont obtenu des résultats intéressants. les interactions les plus souvent démontrées incluent des interactions entre : ) plusieurs facteurs et le type de lien qui unit la personne de soutien et la personne âgée ) divers facteurs et l’appartenance culturelle et ) divers facteurs et la présence de troubles cognitifs. type de lien entre la personne de soutien et la personne âgée dans l’étude de kosloski et montgomery ( ), lorsque la personne de soutien est le conjoint, les personnes qui se perçoivent en moins bonne santé que d’autres personnes de leur âge et les personnes atteintes de démence de type alzheimer sont plus nombreuses à utiliser le centre de jour. celles qui ont le sentiment d’être plus dépendantes des autres sont moins nombreuses à utiliser le centre de jour. ces relations ne sont pas observées lorsque la personne de soutien est un descendant. henry et capitman ( ) ont trouvé que pour les personnes dont l’aidant est le conjoint, le fait que centre de jour favorise la stimulation et la croissance, plutôt que le répit ou le maintien de la santé, est associé à une plus grande intensité d’utilisation. lorsque le type de relation avec la personne aidante n’était pas considéré, ils avaient observé une utilisation plus faible pour les programmes qui mettent l’accent sur la santé, mais n’avaient pas vu de différence avec les programmes orientés vers le répit. l’influence des soutiens secondaires pourrait aussi différer selon que la personne de soutien principale est le conjoint de la personne âgée ou un descendant. dans une étude auprès de conjointes et de filles, li ( ) a observé que les conjointes utiliseraient davantage de services formels lorsqu’il y a présence de personnes de soutien secondaires. ceux qui ont une fille comme personne de soutien principale utilisent généralement un bon nombre de services formels lorsque cette personne de soutien est la seule responsable des soins ou lorsqu’elle est aidée dans ce rôle par des amis. par contre, lorsque cette fille reçoit de l’aide d’autres membres de la famille, ils utiliseraient moins de services formels. la cohabitation entre la personne âgée et la personne de soutien est une autre façon de conceptualiser le type de lien qui existe entre eux. dans l’étude de mävall et thorslund ( ) auprès d’une clientèle atteinte de démence, les trois indicateurs de fardeau (sentiment de captivité relié au rôle, inquiétudes et sentiment de surcharge) et un indicateur du bien-être psychologique de la personne de soutien sont reliés à une plus courte utilisation du centre de jour, mais seulement pour les personnes de soutien qui ne cohabitent pas avec la personne aidée. appartenance culturelle deux études (kosloski, montgomery et karner, ; montoro-rodriguez et coll., ) ont démontré que les facteurs qui influencent le plus l’utilisation du centre de jour diffèrent selon l’appartenance culturelle des participants et de leur personne de soutien. par exemple, dans leur échantillon de personnes de soutien de personne atteinte de démence, montoro-rodriguez et collaborateurs ( ) ont trouvé que le revenu de la personne de soutien serait un facteur plus important pour prédire l’intensité d’utilisation du centre de jour par les personnes d’origine afro-américaine, alors que la possibilité d’obtenir une quantité de répit suffisante serait plus importante pour les personnes d’origine caucasienne. kosloski et collaborateurs ( ) ont observé que les personnes d’origine afro-américaine sont plus nombreuses à utiliser le centre de jour lorsque la personne de soutien est un enfant alors que cette variable n’a pas d’influence chez les personnes d’origine caucasienne et chez les hispanophones. l’âge de la personne âgée était relié à une plus grande probabilité d’utiliser le centre de jour chez les hispaniques. le fait que la personne de soutien occupe un emploi était relié au contact avec le centre de jour pour les personnes d’origine caucasienne et celles d’origine afro-américaine, mais pas pour les hispaniques. présence de troubles cognitifs dans une étude des déterminants de l’utilisation des soins à domicile, bass et collaborateurs ( ) ont observé des interactions significatives entre la présence de troubles cognitifs et de nombreuses autres variables : le fait que la personne âgée vive seule, la présence de dépression chez la personne âgée, la présence de soutiens secondaires en plus de la personne de soutien principale, le fardeau de la personne de soutien principale. la présence d’interaction entre divers facteurs et la présence de troubles cognitifs n’a pas été testée dans les études de l’utilisation du centre de jour que nous avons recensées. toutefois, certains résultats divergents des recherches auprès d’une clientèle générale par rapport aux recherches auprès de la clientèle atteinte de démence pourraient s’expliquer par la présence d’interactions similaires. conclusion de la recension des écrits il ressort de cette recension des écrits que l’utilisation des centres de jour est un phénomène complexe, et ce, pour plusieurs raisons. premièrement, il existe une grande variété de centres de jour qui offrent une gamme très diversifiée de services. il ne s’agit donc pas d’un service homogène. la raison prioritaire d’utilisation peut être aussi bien la surveillance de l’état de santé pour une personne fragile, la volonté de participer à des activités physiques pour une personne ayant fait un avc, le désir de socialiser pour une personne dépressive ou le répit pour les proches aidants d’une personne qui présente de grandes incapacités physiques ou une démence. il est donc logique de penser que les déterminants de l’utilisation pourraient varier pour ces divers motifs d’utilisation. de plus, l’utilisation peut être définie de plusieurs façons : contact (probabilité d’utiliser ou non), intensité de l’utilisation, durée de l’utilisation. les facteurs expliquant le contact avec un service peuvent être très différents de ceux expliquant la poursuite de l’utilisation de ce service (andersen et newman, ). certains déterminants sont toutefois ressortis plus fréquemment ou avec une plus grande constance dans l’ensemble des facteurs étudiés. en voici un résumé. parmi les facteurs prédisposants, on observe que les personnes plus âgées parmi l’ensemble des aînés semblent de moins forts utilisateurs de centre de jour, peu importe le phénomème d’utilisation étudié, sauf pour la clientèle atteinte de démence où l’âge semble avoir moins d’importance. de plus, la présence d’un réseau de soutien pour la personne âgée tout comme pour la personne de soutien semble favoriser l’utilisation du centre de jour. lorsque la personne de soutien est le conjoint, la présence de soutiens secondaires semble plus importante pour faciliter la recherche d’aide formelle. les personnes qui vivent en couple ont pris soin l’une de l’autre depuis de nombreuses années. il semble que lorsque l’état de santé de l’une d’elles se dégrade, l’autre ait besoin de sentir que les autres membres de sa famille ou de son entourage lui permettent de ne plus s’occuper seule de cette tâche. parmi les facteurs de capacité personnels ou communautaires, il apparaît que le revenu n’a pas un très grand impact sur l’utilisation du centre de jour, parce que dans la majorité des cas où ce service n’est pas gratuit, il peut être subventionné en fonction de la capacité de payer des individus. par ailleurs, l’accès à ce type de soutien financier apparait important pour l’accès au centre de jour et son utilisation continue par les clients moins aisés. parmi les facteurs de besoin de la personne âgée, il semble que la présence de troubles cognitifs soit plus souvent associée positivement à l’utilisation du centre de jour, peu importe le phénomème d’utilisation étudié. toutefois, à l’intérieur de la clientèle atteinte de troubles cognitifs, les personnes qui ont plus de problèmes de comportement utilisent le centre de jour moins intensivement et pour de moins longues périodes. plusieurs études n’ont pas trouvé de lien entre l’utilisation du centre de jour et les capacités fonctionnelles. toutefois, celles qui ont observé une différence significative ont trouvé le plus souvent une association positive avec le contact et l’intensité d’utilisation pour la clientèle générale et une association négative pour le contact et la durée d’utilisation dans les études auprès de la clientèle atteinte de démence. enfin, il faut noter que l’influence des problèmes de santé mentale (tels que dépression, stress ou anxiété) sont étudiés presque exclusivement dans les recherches auprès de la clientèle générale. comme ces études sont moins nombreuses que celles auprès de la clientèle atteinte de démence, cette variable demeure peu étudiée. parmi les facteurs de besoin de la personne de soutien, il semble que la santé physique de cette dernière ne soit pas associée à l’utilisation du centre de jour. les variables mesurant le bien-être psychologique ou le sentiment de fardeau de la personne de soutien semblent plus souvent indiquer que, lorsque la situation d’aide est trop difficile, l’utilisation du centre de jour est plus faible. ces facteurs ont été mis en lumière dans les études auprès d’une clientèle atteinte de démence et sont généralement associés à une utilisation brève du centre de jour, probablement en raison d’un recours plus rapide à l’hébergement en institution. les caractéristiques organisationnelles des services ont été peu étudiées. la seule variable pour laquelle il semble possible de tirer une conclusion est l’organisation du transport par le centre de jour, qui est associé positivement à l’utilisation du centre de jour. cependant, certains auteurs ont émis des recommandations pour améliorer l’organisation des services offerts en centre de jour de façon à en augmenter l’utilisation. chapitre : cadre conceptuel et objectifs de l’étude cadres théoriques utilisés dans les études récentes sur l’utilisation des centres de jour parmi les études effectuées au cours des dix dernières années et ayant permis de dégager les déterminants de l’utilisation du centre de jour à la section précédente, certaines ne présentaient aucun cadre théorique de l’utilisation. c’est le cas notamment des études pour lesquelles l’identification des déterminants de l’utilisation n’était pas l’objectif principal, mais le résultat d’analyses secondaires (baumgarten et coll., ; gottlieb et johnson, ; mävall et thorslund, ) et d’études qui portaient sur l’identification des raisons de non-utilisation (strain et blandford, ). parmi celles qui ont utilisé un cadre conceptuel de l’utilisation, on retrouve principalement quatre approches théoriques : ) trois études (douglass et visconti, ; kosloski et coll., ; lynch et coll., ) ont utilisé le modèle d’utilisation des services de santé élaboré par andersen en et repris par andersen et plusieurs collègues (pour un résumé de l’évolution du modèle, voir andersen, ). ) deux études (kosloski et coll., ; montoro-rodriguez et coll., ) ont utilisé les facteurs du modèle d’utilisation d’andersen, complété par un groupe de facteurs tirés du modèle axé sur la pratique (practice-oriented model) décrit par yeatts, crow et folts ( ). ) dabelko ( et ) utilise un modèle social écologique (social ecological model) inspiré des travaux de bloom ( ) et de germain et bloom ( ). ) zarit et collaborateurs ( b) fondent leur étude sur le modèle de processus du stress chez les aidants (stress process model of caregiving : pearlin, mullan, semple et skaff, ). voici un bref survol de ce que chacune de ces approches peut apporter à l’étude des déterminants de l’utilisation des centres de jour. le modèle d’utilisation des services de santé d’andersen (andersen et newman, ; aday et andersen, ; andersen, ) permet une conceptualisation globale intéressante de trois types de facteurs qui peuvent expliquer l’utilisation des services de santé : • les facteurs prédisposants, des facteurs indépendants de l’état de santé immédiat qui, de façon générale, influencent indirectement l’utilisation de services de santé. (ex. : facteurs démographiques, structure sociale, croyances et attitudes envers la santé et l’utilisation des services, etc.); • les facteurs de capacité ou facteurs facilitants (en anglais « enabling factors »), des facteurs personnels ou communautaires qui facilitent l’accès aux services chez des personnes prédisposées à y recourir (ex. : revenus, présence d’assurance-maladie, disponibilité des services dans la communauté, etc.); • les facteurs de besoin de services, des facteurs reliés aux symptômes ressentis ou évalués, qui ont une influence directe sur l’utilisation des services de santé (andersen, ). ce modèle a été largement utilisé dans des études sur l’utilisation des services de soutien à domicile (bass et noelker, ; bass et coll., ; crets, ; forbes et janzen, ; jackson et mittlemark, ; kadushin, ; miller et mcfall, ; starret, rodgers et walters, ) et dans plusieurs études sur l’utilisation des services de répit ou de centres de jour (biegel et coll., ; cox, ; douglas et visconti, ; kosloski et coll., ; ; lynch et coll., ). ces chercheurs ont eu recours à la typologie du modèle d’andersen, en l’adaptant à leur situation particulière. le plus souvent, ces auteurs ont inclus les caractéristiques des personnes âgées et celles de leurs personnes de soutien dans les divers facteurs étudiés (bass et noelker, ; bass et coll., ; biegel et coll., ; douglas et visconti, ; kosloski et coll., ; ; miller et mcfall, ). en effet, il a été démontré que les personnes de soutien jouent un rôle important dans la connaissance qu’ont les personnes âgées des services formels et dans l’utilisation qu’elles font de ces services (bass et noelker, ; cotrell et engel, ; strain et blandford, ). selon strain et blandford ( ), les caractéristiques des personnes de soutien seraient plus importantes que les caractéristiques des personnes âgées pour prédire la connaissance de la disponibilité de plusieurs types de services de soutien à domicile, connaissance préalable à l’utilisation. de plus, les centres de jour, comme plusieurs autres services gérontologiques, considèrent aussi les besoins de la personne de soutien lorsqu’ils évaluent le besoin de service d’une personne âgée. le modèle d’andersen a été critiqué par plusieurs chercheurs parce qu’en général, il ne permet d’expliquer qu’une faible proportion de la variation dans l’utilisation des services de santé des personnes âgées (wolinsky et johnson, , kosloski et coll., ; ). dans les études recensées pour cette recherche et qui fournissent cette donnée, il explique entre à % de la variance dans l’utilisation des services (bass et noelker, ; bass et coll., ; lynch et coll., ; starrett et coll., ). il faut noter que les indicateurs retenus pour mesurer les trois types de facteurs du modèle varient d’une étude à l’autre et la plupart du temps, ne couvrent pas l’ensemble des éléments compris dans le modèle. par exemple, dans la majorité des études qui se disent fondées sur le modèle d’andersen, les croyances et attitudes envers la santé n’ont pas été prises en compte (kosloski et montgomery, ). de plus, seuls un petit nombre de chercheurs l’ont réellement utilisé comme un modèle interactif plutôt qu’un modèle additif (kosloski et montgomery ; calsyn et winter, ). une seconde critique énoncée par rapport à ce modèle est qu’il inclut surtout des facteurs qui relèvent des caractéristiques des individus, mais ne tient pas compte des facteurs organisationnels qui influencent la façon dont les services sont livrés. ainsi, à l’exception des croyances envers la santé et l’utilisation des services, les fournisseurs de soins peuvent difficilement influencer les autres facteurs. ce modèle offrira donc peu de pistes pour les gestionnaires de services qui veulent améliorer l’utilisation ou l’accès à leurs services (yeats et coll., ; kosloski et coll., ; montoro-rodriquez et coll., ). en effet, si le modèle inclut certaines caractéristiques relevant de l’organisation du système de santé à un niveau global (présence d’assurance-maladie, disponibilité de services dans la communauté, etc.) (andersen et newman ; andersen ), il accorde peu d’attention aux caractéristiques organisationnelles propres à chaque fournisseur de services (ex. : structure du personnel). ces caractéristiques influenceront vraisemblablement l’expérience de l’individu qui cherche à accéder à un service particulier ou qui doit décider de poursuivre ou non l’utilisation d’un service donné. enfin, notons que ce modèle a été élaboré pour expliquer l’utilisation de services médicaux. les facteurs qui expliquent l’utilisation du centre de jour, un service à la fois de nature sociale et de santé, pourraient différer. yeats et collaborateurs ( ) proposent un modèle d’utilisation axé sur la pratique (practice-oriented model). ce modèle cherche à rendre compte des facteurs qui pourraient stimuler l’amélioration de l’utilisation de services sociaux par divers groupes minoritaires. il inclut trois types de facteurs sur lesquels les fournisseurs de services peuvent agir : • les facteurs reliés aux connaissances qui comprennent la connaissance de l’existence des services, la connaissance des procédures pour accéder aux services, ainsi que la connaissance des symptômes qui justifient une consultation, ce qui permet l’identification du besoin de service par l’individu; • les facteurs reliés à l’accès qui comportent au moins trois types de barrières qui peuvent nuire à l’utilisation des services. la première concerne la capacité de se rendre à l’endroit où les services sont offerts. dans le cas des personnes âgées, il faut souvent considérer une capacité de déplacement restreinte. ainsi, le fait de fournir des services de transport est un facteur pouvant faciliter l’accès aux services. la seconde barrière concerne l’aspect abordable des services. ce facteur implique une mise en relation du coût du service par rapport aux revenus de l’individu. la troisième barrière relève de la disponibilité du service de façon à en permettre un accès au temps opportun et en quantité suffisante pour répondre aux besoins; • les facteurs reliés à l’intention d’utiliser un service. on conçoit que même si un besoin de service est reconnu et qu’un service est accessible pour répondre à ce besoin, l’utilisation n’aura lieu que si les caractéristiques du service disponible sont suffisamment attrayantes et conformes aux valeurs de l’individu pour induire le comportement d’utilisation. dans les services de nature sociale, les éléments inclus dans ce facteur peuvent varier selon le type de services offerts. ils peuvent comprendre la qualité de la nourriture servie, les activités sociales adaptées aux goûts des participants, la concordance culturelle entre les fournisseurs de services et les clients, de même que les attitudes envers le fait de recevoir des services de nature sociale (qui peuvent inclure, par exemple, un sentiment d’humiliation ou la peur du ridicule). bien qu’il présente des concepts intéressants pour décrire certains aspects de l’utilisation des centres de jour, ce modèle semble incomplet en ce qu’il ne comporte aucune mesure objective des besoins pouvant justifier l’utilisation du centre de jour. dans le contexte québécois où l’accès au centre de jour n’est possible que si un besoin est reconnu par un professionnel de la santé, il semble important d’inclure des facteurs de besoin dans le cadre conceptuel de la présente étude. enfin, notons que ce modèle axé sur la pratique a été peu testé de façon empirique. si l’étude de kosloski et collaborateurs ( ) s’inspirait de certains facteurs tirés de ce modèle, nous n’avons recensé qu’une seule étude (montoro-rodriguez et coll., ), qui utilisait formellement ce modèle, en complément au modèle d’andersen, pour analyser l’utilisation des centres de jour et des services de répit. le modèle social écologique utilisé par dabelko ( et ) suppose que les comportements sociaux sont fonction de l’interaction entre l’individu et son environnement. des tâches d’adaptation sont effectuées pour atteindre une adéquation entre la personne et son environnement. dans ce contexte, l’individu utilisera des services de santé et des services sociaux s’ils contribuent à l’aider à répondre aux besoins d’adaptation entre ses sous-systèmes individuels (biologique, affectif, cognitif et comportemental) et les sous-systèmes de son environnement (culturel, sociétal et physique). dans ses deux études, dabelko cherche donc à déterminer les facteurs individuels et environnementaux qui influencent la durée d’utilisation du centre de jour. les facteurs individuels incluent : les facteurs biologiques (âge et le genre), affectifs (présence de dépression ou d’anxiété); cognitifs (diagnostic de démence et problèmes de comportement reliés aux troubles cognitifs) ainsi que des facteurs de santé (hospitalisation antérieure, hébergement temporaire en institution; capacités fonctionnelles démontées par des scores d’avq et d’avd; risque nutritionnel; incontinence et présence de diagnostics multiples). les facteurs environnementaux comprennent les facteurs culturels (groupe ethnique; langue; religion), les facteurs sociaux relatifs aux ressources financières (revenu; source de financement pour les services; coût à assumer personnellement pour les services), les facteurs sociaux relatifs aux ressources sociales (état civil; niveau d’éducation; nombre de personnes dans la maison; lien avec l’aidant principal; l’intensité des services de centre de jour auxquels la personne a accès en nombre de jours par semaine; l’accès à un service de transport), les facteurs physiques relatifs au centre de jour fréquenté (capacité du centre de jour/nombre de clients servis; dimension du centre de jour/nombre de pieds carrés; ratio client/personnel; diversité culturelle du personnel adaptée à celle des clients; programme qui accepte ou refuse les clients avec des troubles cognitifs). À notre connaissance, dabelko est la seule auteure à avoir utilisé ce modèle pour cerner les déterminants de l’utilisation du centre de jour. les indicateurs retenus par cette auteure pour chacun des groupes de variables sont discutables. on peut se demander, par exemple, pourquoi la diversité culturelle du centre de jour est placée sous les facteurs de l’environnement physique, plutôt que de l’environnement social. enfin, bien qu’elle explique ce modèle comme un modèle interactif, l’expérimentation qui s’ensuit ne tient aucunement compte de possibles interactions, ni d’un ordre de priorité des variables. ainsi, la contribution possible de ce modèle à l’étude de l’utilisation des centres de jour demeure incertaine. la majorité des variables étudiées pourraient être incluses dans un cadre conceptuel combinant le modèle d’utilisation d’andersen et le modèle axé sur la pratique de yeats et collaborateurs. zarit et collaborateurs ( b) fondent leur étude de l’utilisation du centre de jour par des personnes atteintes de démence sur le modèle de processus du stress chez les personnes de soutien (stress process model of caregiving : pearlin et coll., ). selon ce modèle, une personne de soutien est en constant processus de stress et d’adaptation, au cours duquel la décision d’utiliser des services représente un effort pour s’adapter aux facteurs primaires de stress de la situation d’aide. cette décision est influencée par plusieurs facteurs, dont : • le contexte de la situation d’aide qui inclut : les caractéristiques sociales de la personne âgée et de sa personne de soutien; le type de relation (relation maritale ou enfant - parent); la qualité de la relation avant l’apparition de la maladie; et le type de ressources auxquelles la personne de soutien a accès. ce sont des facteurs indépendants de l’état de santé de la personne âgée mais qui influencent la réaction de la personne de soutien à la situation d’aide; • les facteurs primaires de stress comprennent des indicateurs objectifs du niveau d’aide dont la personne âgée a besoin (incapacités fonctionnelles, troubles cognitifs, problèmes de comportement), ainsi que des indicateurs subjectifs de l’effort consacré à cette aide par la personne de soutien (fardeau ressenti); • les facteurs secondaires de stress sont composés d’autres éléments stressants de la vie de la personne de soutien, non reliés directement à la situation d’aide, comme les conflits de responsabilités entre travail et responsabilités familiales, les problèmes économiques, etc.; • l’évaluation que la personne de soutien fait des facteurs de stress influence son bien- être psychologique. ces facteurs influencent directement son besoin d’adaptation, entre autres, par le recours à des services d’aide formelle pour une prise en charge partielle (ex. : centre de jour, répit, etc.) ou totale (ex. : placement en institution) de la situation. selon zarit et collaborateurs ( b), lorsque les facteurs de stress primaires et la détresse psychologique de la personne de soutien sont élevés, l’utilisation du centre de jour sera de plus courte durée, car le service n’apportera pas le répit suffisant pour éviter le placement en institution. ce modèle apporte un éclairage intéressant sur l’aspect subjectif des besoins des personnes de soutien envers un service de répit comme le centre de jour. toutefois, s’il s’applique bien à la situation de l’utilisation des centres de jour par les personnes atteintes de démence, il ne peut expliquer l’ensemble de l’utilisation des centres de jour par une clientèle générale, puisque dans ce dernier cas, le centre de jour répond à un ensemble varié de besoins qui, parfois, n’ont rien à voir avec le répit de la personne de soutien. l’étude de ces modèles nous amène à concevoir un modèle d’utilisation des services de centre de jour qui permettra à la fois d’analyser cette utilisation et de suggérer des façons de l’améliorer. cadre conceptuel retenu le cadre retenu sera adapté aux caractéristiques particulières des centres de jour du québec, ainsi qu’à notre situation particulière de recherche. il s’inspire de la typologie de facteurs décrite par andersen ( ). il est complété par des facteurs reliés aux caractéristiques des services, s’inspirant des travaux de yeats et collaborateurs ( ), de kosloski et collaborateurs ( ) et de montoro-rodriguez et collaborateurs ( ). les caractéristiques propres aux services que la personne reçoit ont un impact certain sur leur capacité à répondre aux besoins identifiés. pour des services de nature discrétionnaire, où la substitution de services est possible, ces facteurs auront aussi une influence directe sur la décision d’utiliser ou non un service particulier et de poursuivre son utilisation. ainsi, nous retenons premièrement deux grandes catégories de facteurs de la typologie d’andersen : les facteurs prédisposants et les facteurs de besoin. les facteurs de capacité personnels ou communautaires ne sont pas retenus pour cette étude pour plusieurs raisons. en premier lieu, les centres de jour sont accessibles sur tout le territoire sur lequel l’étude s’est déroulée. ensuite, dans le contexte québécois, les services des centres de jour sont des services subventionnés pour tous les utilisateurs, sans égard à leur revenu. enfin, les données sur le revenu présentaient un fort taux de données manquantes. ceci est souvent le cas dans les études populationnelles, et même lorsque ces données ont été incluses dans les études d’utilisation, elles n’avaient que très rarement un effet sur l’utilisation parce que les services sont souvent subventionnés ou remboursés par des assurances (kosloski et coll., ). deuxièmement, à l’instar de toutes les recherches récentes sur l’utilisation des centres de jour, les caractéristiques des personnes de soutien sont considérées. comme le propose le modèle de processus du stress chez les personnes de soutien (pearlin et coll., ; zarit et coll., b), c’est surtout l’évaluation que la personne de soutien fait de la situation qui influera sur son niveau de besoin. cette évaluation peut se mesurer par le fardeau ressenti ou par le bien-être psychologique de la personne de soutien. cette évaluation est influencée par les caractéristiques des personnes de soutien (âge, sexe, état de santé, rôle d’aidant choisi ou imposé, durée de l’aide, etc.), ainsi que par plusieurs caractéristiques des personnes âgées (âge, sexe, type de lien avec la personne de soutien, qualité de la relation antérieure à la maladie, niveaux de besoin amenés par la maladie). troisièmement, pour nous adapter au contexte des centres de jour du québec, parmi les caractéristiques des services, nous inclurons à la fois des caractéristiques de centres de jour et des caractéristiques des clsc qui orientent les personnes âgées vers le centre de jour et qui parfois offrent même un soutien à cette participation par exemple, en aidant les personnes âgées à se préparer pour cette activité. le cadre conceptuel retenu est représenté graphiquement à la figure . dans ce modèle, les facteurs prédisposants sont des facteurs qui sont présents avant que le besoin de services ne se fasse sentir. ils influencent la propension à utiliser les services, mais aussi le niveau de besoin pour les services offerts en centre de jour. les facteurs de besoin sont directement reliés aux besoins que le centre de jour tente de combler. les caractéristiques des services sont des facteurs qui peuvent interagir avec les facteurs de besoin pour modifier les taux d’utilisation du centre de jour. en effet, pour expliquer le contact avec le centre de jour, on peut penser par exemple qu’à besoin égal, une moins grande proportion de sujets utiliseront le centre de jour d’un territoire si ce dernier présente une liste d’attente plus longue. toutefois, si les centres de jour ont établi des critères de priorisation, l’effet de la liste d’attente pourrait être différent chez les personnes avec un niveau de besoin plus faible que chez celle avec un niveau de besoin plus élevé. pour ce qui est de l’intensité de la participation, on peut penser qu’un certain type d’activités pourrait favoriser une participation plus grande au centre de jour pour des sous-groupes de clients (ex. : hommes vs femmes) auxquels ces activités sont mieux adaptées. figure : facteurs qui influencent l’utilisation du centre de jour déterminants de l’utilisation du centre de jour les facteurs qui pourraient être associés à l’utilisation du centre de jour ont été ciblés à partir de la recension des écrits sur l’utilisation des centres de jour et de services connexes, ainsi que de notre expérience personnelle en centre de jour. c’est surtout parmi les caractéristiques des services, qui nous sont apparues les moins étudiées à ce jour, que les facteurs inclus dans notre modèle seront plus innovateurs. les facteurs prédisposants de la personne âgée incluent l’âge, le sexe, l’éducation et le type de profession antérieure, ainsi que la présence d’un réseau de soutien pour la personne âgée. de plus, dans le contexte des services de longue durée que sont les centres de jour, services où les congés sont peu fréquents, le fait d’avoir un épisode antérieur d’utilisation du centre de jour peut être le signe que le centre de jour ne répondait pas aux goûts et aux besoins de la personne âgée, la prédisposant négativement à utiliser le service à nouveau. c’est pourquoi nous l’incluons dans les facteurs prédisposants. dans un contexte québécois, la capacité de communiquer en français ou en anglais prédisposera aussi à poursuivre une activité de groupe. enfin, les attitudes envers les activités de groupe influenceront aussi la prédisposition à utiliser les services de centre de jour. les facteurs prédisposants de la personne de soutien comprennent l’âge, le sexe, le lien avec la personne âgée, l’éducation, le type de profession antérieure ou actuelle, la présence et la qualité du réseau de la personne de soutien. plusieurs chercheurs ont observé une réticence des personnes de soutien à utiliser des services de soutien formels pour les aider dans leur rôle ou à laisser le parent âgé en perte d’autonomie avec un étranger (caserta et coll., ; cotrell, ; paquet, ). dans ce contexte, l’utilisation d’autres services de répit par la personne de soutien peut être considérée comme un facteur prédisposant à l’utilisation du centre de jour, puisque ce sera une indication que la personne de soutien a moins de réticences à laisser des étrangers prendre soin de la personne âgée. d’autres facteurs prédisposants peuvent être considérés soit pour la personne âgée, soit pour sa personne de soutien, soit simultanément pour les deux. il s’agit de : l’appartenance culturelle (pays d’origine, ethnie, langue parlée à la maison et religion), pour laquelle la donnée de la personne âgée est fortement corrélée à celle de la personne de soutien; du type de lien entre la personne âgée et sa personne de soutien (conjoint, enfant, amis ou autre; cohabitation); la qualité de la relation entre ces deux personnes antérieurement à la maladie, ainsi que des croyances et attitudes envers la santé, les services formels de soutien à domicile et les responsabilités de soins au sein de la famille. les facteurs de besoin de la personne âgée incluent des indicateurs de la santé physique et de la santé mentale, la présence de troubles cognitifs et de problèmes de comportement qui y sont associés, le degré de capacité fonctionnelle de la personne âgée, ainsi que ses hospitalisations pendant la période d’observation. de plus, le fait d’avoir peu d’autres activités à l’extérieur du domicile peut aussi être considéré comme un facteur de besoin puisqu’un des buts du centre de jour est de réduire l’isolement créé par les incapacités fonctionnelles des personnes âgées. les facteurs de besoin de la personne de soutien incluent des indicateurs de sa santé physique, de sa capacité fonctionnelle, ses responsabilités concurrentes comme un emploi ou des responsabilités familiales (ex. : jeunes enfants), la durée de l’aide apportée à la personne âgée, ainsi que le bien-être psychologique et le fardeau ressenti par la personne de soutien. les caractéristiques des services du centre de jour comprennent les critères d’admissibilité au centre de jour du territoire, la durée d’attente moyenne pour l’admission, les téléphones de rappel, les politiques de transport, le coût pour le transport et les repas, la flexibilité de la politique de paiement, le ratio de personnel du centre, la durée et le type d’activités offertes, ainsi que la fréquence de participation recommandée. nous pouvons supposer que l’admission d’une personne en centre de jour pourrait être retardée par la présence de liste d’attente au centre de son territoire. de plus, les professionnels qui font les recommandations de services peuvent être moins enclins à recommander un service pour lequel ils savent que l’attente est longue. cela ferait qu’à besoin égal, certaines personnes pourraient ne pas avoir accès à ce service. certains centres font des appels la veille ou le matin même de la présence prévue au centre de jour, de façon à remémorer le rendez-vous au participant. on peut penser que de tels appels peuvent stimuler l’intensité de la participation, de même que le maintien de la participation, donc augmenter la probabilité de contact avec le centre de jour au cours d’une certaine période de temps. dans le contexte québécois, la majorité des centres de jour fournissent le transport aux usagers. toutefois, des politiques différentes (utilisation de taxis ou de minibus adaptés ou utilisation du transport adapté de la société de transport de montréal, réservation du transport par les usagers ou par le personnel du centre) pourraient faciliter ou limiter l’utilisation du centre de jour. la structure de personnel, tant au plan du ratio de clients / membre de personnel, qu’au plan du type de formation des intervenants peut influencer l’utilisation du centre de jour. un plus faible ratio de clients / membre de personnel peut permettre un suivi plus personnalisé qui pourrait être de nature à favoriser la participation au centre de jour. de même, la formation du personnel peut être plus ou moins adéquate pour répondre aux besoins d’un participant donné, en fonction des besoins particuliers de ce participant. la durée des visites, la fréquence de participation recommandée et le type d’activités offertes peuvent aussi influencer le degré de satisfaction des participants. par exemple, certains types d’activités pourraient plaire davantage à certains sous-groupes (ex. : hommes vs femmes, personnes qui présentent ou non des troubles cognitifs, etc.). enfin, les caractéristiques des services reçus des clsc peuvent influencer l’utilisation du centre de jour. par exemple, l’intervenant pivot ou le gestionnaire de cas attitré à la personne âgée, celui qui peut ou non la diriger vers le centre de jour, a un rôle important. plusieurs caractéristiques relatives à cet individu (âge, sexe, appartenance culturelle, type de formation, nombre d’années d’expérience dans la profession et dans les soins aux personnes âgées, expériences antérieures positives ou négatives avec le centre de jour du territoire) peuvent influencer sa façon d’interpréter les données sur l’état de santé de la personne âgée et le bien-être ou la détresse de sa personne de soutien pour y déceler un besoin pour les activités en centre de jour. de même, la gestion de cas plus intensive fournie par le projet sipa (en cours au moment de cette étude) apporte, aux personnes âgées qui en bénéficient, un suivi qui pourrait être de nature à favoriser l’identification plus rapide des besoins et une meilleure adhésion aux recommandations de participation au centre de jour. une fréquence plus élevée d’aide de la part du clsc pour les avq et avd peut être un soutien important au maintien à domicile, qui favorisera une plus grande durée d’utilisation du centre de jour en évitant un recours rapide à l’hébergement. enfin, pour les personnes qui ont besoin d’aide pour l’hygiène et l’habillement, la présence d’aide du clsc pour compléter ces activités les jours de présence en centre de jour pourrait faciliter la participation aux activités du centre de jour. pour les personnes seules, sans cette aide, la participation ne serait probablement pas possible. pour les personnes qui demeurent avec une personne de soutien, sans cette aide, la participation au centre de jour peut accentuer le fardeau de la personne de soutien en exigeant que la routine de soins soit accomplie plus rapidement les jours de présence en centre de jour . communication personnelle : discussion à la table de concertation des centres de jour de montréal-centre, le er février . limites relatives à la disponibilité des données malheureusement, certaines variables identifiées comme déterminants possibles de l’utilisation du centre de jour dans le cadre conceptuel retenu ne pourront être étudiées dans la présente recherche. en effet, à l’époque où cette étude a été amorcée, on constatait un manque d’homogénéité dans les données consignées par les centres de jour concernant l’état de santé des usagers. ainsi, l’analyse secondaire de données recueillies dans le cadre d’une étude plus large sur les services intégrés aux personnes âgées a permis d’obtenir des données valides tant sur les caractéristiques des individus que sur leurs présences en centre de jour, mais a toutefois limité les types de variables qui ont pu être prises en compte dans les analyses effectuées pour cette recherche. ainsi, il n’y avait pas de données disponibles sur les intervenants qui dirigent les participants vers le centre de jour, ni sur les attitudes des participants envers les activités de groupe, les services de centre de jour ou les services de soutien à domicile. il n’y avait aucune donnée sur les problèmes de comportement. les données sur les activités sociales des participants à l’étude portaient sur le nombre de sorties par mois. cette donnée n’a pas pu être utilisée comme mesure de l’isolement social des participants préalable à l’utilisation du centre de jour, parce que la réponse pouvait inclure les sorties pour fréquenter le centre de jour. de même, les données sur l’utilisation du répit par les personnes de soutien pouvaient inclure le centre de jour. enfin, dans l’ensemble de l’échantillon (participants et non-participants au centre de jour), il y avait beaucoup de données manquantes dans les questionnaires aux personnes de soutien. ainsi, les données sur la qualité de la relation entre les personnes âgées et leur personne de soutien n’ont pu être utilisées. phénomènes d’utilisation dans la présente étude, nous nous penchons sur deux phénomènes d’utilisation des centres de jour : ) le contact ou le fait d’utiliser le centre de jour au cours d’une certaine période de temps : comme la figure le démontre, un premier contact avec le centre de jour survient lorsqu’un intervenant recommande à une personne âgée ou à sa personne de soutien les services offerts par le centre de jour et que la personne âgée accepte de s’y présenter pour une évaluation. le recours au centre de jour se poursuit si la personne âgée (ou sa personne de soutien) juge que la fréquentation d’un centre de jour est une intervention valable pour répondre au besoin identifié. cette étude cherche à cerner les caractéristiques qui distinguent, parmi un groupe de personnes âgées qui présentent des incapacités, celles qui ont eu au moins un contact avec le centre de jour au cours d’une période donnée. ) l’intensité de la participation : dans le contexte québécois où l’accès au centre de jour est souvent limité par les listes d’attente, l’intensité de la participation peut relever à la fois du personnel du centre de jour qui décidera de la fréquence de participation à offrir et de la personne âgée elle-même pour ce qui est du degré de conformité avec la recommandation de fréquentation ou de la régularité de la participation. dans cette étude, nous nous attarderons à la régularité de la participation, une mesure de l’adhésion au centre de jour, définie comme le taux participations réelles / participations prévues. ce taux peut être calculé à partir des journées de fréquentation prévues pour chaque personne, en excluant les journées où le centre de jour était fermé, ainsi que celles où la personne était hospitalisée ou placée en hébergement temporaire, et donc dans l’impossibilité de fréquenter le centre de jour. cette mesure permettra de distinguer les caractéristiques des personnes qui ont une participation soutenue de celles qui ont une participation irrégulière au centre de jour. les activités offertes en centre de jour l’influence des caractéristiques des services sur l’utilisation du centre de jour a été peu étudiée. parmi ces caractéristiques, l’influence du type d’activités offertes en centre de jour l’est encore moins. ce n’est pas étonnant, puisqu’un ensemble très diversifié d’activités est offert dans différents centres de jour et qu’il n’y a pas de classification reconnue permettant d’opérationnaliser cette variable dans des études quantitatives. nous nous sommes donc attardés à décrire les activités qui sont offertes par les centres de jour, ainsi qu’à établir une classification qui permettra d’opérationnaliser cette variable afin de pouvoir l’utiliser dans notre étude de la régularité de la participation au centre de jour. les objectifs de cette recherche le but de la présente recherche est d’approfondir les connaissances des facteurs qui influencent l’utilisation des centres de jour par les personnes âgées qui présentent des incapacités. elle comporte trois groupes d’objectifs dont les résultats sont présentés dans les trois articles inclus dans la présente thèse : objectifs de l’article : estimer la proportion d’utilisateurs de centre de jour parmi une clientèle âgée qui présente des incapacités, caractériser ces utilisateurs et ce qui les distingue des non-utilisateurs et analyser les déterminants du contact avec le centre de jour. objectifs de l’article : identifier des groupes d’utilisateurs de centre de jour ayant des caractéristiques semblables, identifier les activités qui sont offertes par les centres de jour, classifier ces activités et déterminer l’adéquation entre les activités auxquelles participent les divers groupes d’utilisateurs et leurs caractéristiques de santé. objectifs de l’article : pour le groupe d’utilisateurs, décrire la régularité de la participation au centre de jour et définir les facteurs associés à la régulatité de la participation. adaptation du cadre théorique global aux objectifs de recherche relatifs aux déterminants de l’utilisation les divers facteurs présentés dans le cadre théorique sont susceptibles d’influencer de manière différente l’utilisation du centre de jour selon que l’on s’intéresse au contact avec le centre de jour ou à la régularité de la participation. par conséquent, des modèles légèrement différents ont été utilisés pour analyser ces deux phénomènes d’utilisation du centre de jour. ainsi, pour le premier article qui porte sur le contact avec le centre de jour au moment de l’étude et ce qui distingue les utilisateurs des non-utilisateurs de centre de jour, le modèle adapté est présenté à la figure de l’article (voir page ). lors de cette analyse, les différentes caractéristiques de la personne de soutien n’ont pas été considérées étant donné le nombre de questionnaires aux personnes de soutien qui étaient manquants ou incomplets. la prise en compte de ces variables aurait entraîné une réduction importante de la taille de l’échantillon de l’étude. les facteurs prédisposants considérés sont l’âge, le sexe, l’appartenance culturelle, l’éducation de la personne âgée, le type de profession antérieure de la personne âgée ou de son conjoint, la capacité de la personne âgée à communiquer en français ou en anglais, la présence d’un épisode antérieur d’utilisation du centre de jour, ainsi que comme indicateur du réseau de soutien, la cohabitation ou non avec une personne de soutien. les facteurs de besoin comprennent des indicateurs de la santé physique et de la santé mentale, la présence de troubles cognitifs, le degré de capacité fonctionnelle de la personne âgée. les caractéristiques des services du centre de jour incluent l’admissibilité au centre de jour du territoire (critères d’exclusion), la durée d’attente moyenne pour l’admission au centre de jour, le coût demandé par le centre de jour, la présence de téléphones de rappel, ainsi que la structure de personnel. les caractéristiques des services des clsc incluent le type de services : services intégrés (sipa) ou services réguliers et la fréquence de l’aide reçue du clsc pour les avq et les avd. pour le troisième article qui vise à définir les facteurs associés à la régularité de la participation au centre de jour, le modèle adapté est présenté à la figure de l’article (voir page ). pour cette analyse, bien que l’échantillon soit plus petit puisqu’il ne comprend que les sujets ayant au moins une présence au centre de jour, la proportion de questionnaires aux personnes de soutien manquants ou incomplets est plus faible. ainsi, nous avons choisi d’inclure les principales caractéristiques de la personne de soutien dans l’analyse, tout en faisant preuve de parcimonie pour éviter un trop grand nombre de variables par rapport à la taille de l’échantillon. ainsi, les facteurs prédisposants considérés sont l’âge, le sexe, l’appartenance culturelle, l’éducation de la personne âgée, le type de profession antérieure de la personne âgée ou de son conjoint, la capacité de la personne âgée à communiquer en français ou en anglais, la présence d’un épisode antérieur d’utilisation du centre de jour, ainsi qu’une variable combinant le type de lien avec la personne de soutien et la cohabitation ou non avec cette personne comme indicateur du réseau de soutien. les facteurs de besoin comprennent des indicateurs de la santé physique et de la santé mentale, la présence de troubles cognitifs, le degré de capacité fonctionnelle de la personne âgée. ils comprennent aussi l’âge, le sexe et la capacité fonctionnelle de la personne de soutien, la durée de l’aide, ainsi que le fardeau subjectif de la personne de soutien. les caractéristiques des services reçus du centre de jour incluent la durée d’une présence au centre de jour, la fréquence de participation recommandée, ainsi que le type d’activités auxquelles la personne participe. les caractéristiques des services reçus des clsc incluent le type de services : services intégrés (sipa) ou services réguliers, la fréquence de l’aide reçue du clsc pour les avq et les avd, ainsi que la présence d’aide du clsc lors des jours de participation au centre de jour. chapitre : méthodes de recherche stratégies de recherche il s’agit d’une étude synthétique comparative fondée sur l’analyse statistique d’un ensemble de relations interdépendantes dans le but de tester un modèle théorique. (contandriopoulos, champagne, potvin, denis et boyle, ). la recherche s’appuie sur des informations provenant de deux bases de données existantes, ainsi que sur une collecte originale de données. les deux bases de données existantes sont : ) les données tant sociodémographiques que reliées à la santé physique et psychologique des personnes âgées et des personnes de soutien, recueillies dans le cadre du projet sipa : services intégrés pour personnes âgées. ) les données statistiques recueillies de façon routinière par quatre des cinq centres de jour qui desservent ce même territoire, à l’aide d’un logiciel commun : jonction et diffusion informatique (jedi) . ce logiciel fut conçu spécialement pour recueillir des données sur les clients, les activités et les présences aux centres de jour. ces informations ont été complétées par une cueillette originale de données dans les dossiers du cinquième centre de jour (qui n’utilise pas le logiciel jedi), cueillette de données planifiée en collaboration avec l’équipe du projet sipa. de plus, des entrevues avec les coordonnateurs de centres de jour ont permis de préciser les caractéristiques des activités offertes, ainsi que les ressources, les procédures et les critères d’admission propres à chacun des centres de jour. le logiciel jedi (pour jonction et diffusion informatiques, la compagnie qui a créé ce logiciel), est un système de bases de données et de rapports périodiques créé sur la plateforme access de microsoft et conçu spécialement pour recueillir des données sur les clients, les activités et les présences en centre de jour. enfin, un groupe d’experts, composé de membres du groupe d’intérêt des responsables de centres de jour de montréal, a été rencontré dans le but de procéder à une classification des activités en centre de jour, à partir des activités recensées dans les registres d’activités des divers centres de jour. cette classification était préalable à l’étude de l’adéquation entre les activités des centres de jour et les caractéristiques de santé des utilisateurs. population à l’étude les personnes admises au projet sipa ont été recrutées par le biais des services de soutien à domicile de trois centres locaux de services communautaires (clsc) de la région de montréal. ces personnes devaient vivre à domicile au début de l’étude et présenter des incapacités fonctionnelles indiquées par un résultat de – ou moins au système de mesures de l’autonomie fonctionnelle (smaf) (desrosiers, bravo, hébert et dubuc, ; hébert, carrier et bilodeau, ). elles devaient aussi accepter de participer à une étude randomisée sur les services intégrés pour personnes âgées et pouvoir s’exprimer en français ou en anglais avec les membres du projet sipa, ou avoir un proche en mesure de le faire (béland et coll., ; a; b). il s’agit donc d’une partie de la population âgée habituellement identifiée comme présentant des limitations d’activités de modérées à graves. dans une étude populationnelle réalisée par béland, haldemann, martin, bourque, ouellette et lavoie ( ), on observe que de à % de la population âgée de ans et plus présentent des incapacités correspondant à un résultat de – ou moins au smaf. ces données sont cohérentes avec une étude de développement ressources humaines canada ( ) qui trouvait des taux d’incapacités graves allant de à % selon les provinces, chez la population âgée de ans et plus du canada. dans le cadre du projet sipa, personnes âgées vulnérables de la région de montréal ont été recrutées. parmi celles-ci, des sous-groupes différents ont été inclus dans chacun des volets de la présente étude. la sélection des personnes incluses et exclues dans chacun de ces volets est décrite dans le texte qui suit, ainsi que de façon graphique à la figure . pour le premier article qui définit les caractéristiques des utilisateurs de centre de jour et ce qui les distingue des non-utilisateurs, l’échantillon de départ est composé de personnes âgées de ans ou plus, toujours suivies par l’équipe de recherche sipa à la fin de la première phase du projet, en mai . de ce nombre, personnes hébergées de façon permanente au moment du questionnaire, personnes hospitalisées pour toute la durée de la période d’observation, ainsi que sujets qui présentaient des données manquantes pour des variables importantes à l’étude ont été exclus des analyses. l’échantillon final comprend donc sujets. certaines différences entre les sujets inclus et exclus sont observées dans la proportion de sujets pour lesquels le questionnaire est rempli par un substitut. les sujets exclus sont plus nombreux à présenter de trop grandes incapacités fonctionnelles pour répondre aux questions par eux-mêmes ou à ne pas avoir une connaissance suffisante du français ou de l’anglais. pour plus d’information à ce sujet, voir l’article . de ces personnes, ont participé aux activités d’un centre de jour pendant la période étudiée. toutefois, les données sur les activités auxquelles ces personnes ont participé étaient manquantes pour quatre d’entre elles. ainsi, pour la seconde partie de cette étude qui vise à décrire les activités auxquelles ces personnes ont participé lors de leurs présences au centre de jour et à découvrir les liens entre les activités offertes et les caractéristiques des participants au centre de jour, l’échantillon final est de participants. figure : participants inclus à chacune des étapes de cette étude sur les centres de jour puisque nous avons choisi d’inclure les caractéristiques des personnes de soutien pour le troisième article, nous avons aussi dû exclure des analyses les participants qui n’avaient pas identifié de personne de soutien et les pour lesquels le questionnaire à la personne de soutien manquait. ainsi, pour cette partie de l’étude qui vise à identifier les déterminants de la régularité d’utilisation du centre de jour, l’échantillon final est de participants. pour ces deux dernières parties, la seule différence statistiquement significative entre les caractéristiques démographiques et de santé des sujets inclus et exclus concerne le lien avec la personne de soutien : pour les sujets exclus, la personne de soutien est plus rarement le conjoint. pour plus d’information à ce sujet, voir les articles et . période d’observation les observations se centrent autour du questionnaire t du projet sipa, qui s’est échelonné du mai au novembre . c’est la période pour laquelle nous disposons du maximum d’information sur les déterminants possibles de l’utilisation (le questionnaire aux personnes de soutien n’est disponible qu’à t ). pour chaque individu, l’utilisation du centre de jour a été observée pendant une période de six mois, soit de trois mois avant à trois mois après la date du questionnaire. cette période a été retenue en considérant deux facteurs importants. puisque les caractéristiques de santé des personnes âgées sont susceptibles de changer rapidement, une courte période d’observation devait être privilégiée. elle devait toutefois être suffisamment longue pour englober un échantillon représentatif des participations au centre de jour, malgré les absences qui peuvent être fréquentes pour certaines personnes. méthodes de collectes de données les caractéristiques des sujets et de leur personne de soutien ont été recueillies à la fin de la phase du projet sipa (mai à novembre ) par l’équipe de recherche sipa, à l’aide des questionnaires remplis lors d’entrevues réalisées auprès des personnes âgées et de leurs personnes de soutien. pour les personnes âgées incapables de répondre elles-mêmes au questionnaire, un substitut a été utilisé. un relevé de l’utilisation des services de santé par les personnes âgées et leurs personnes de soutien (lorsque ces dernières y ont consenti) a été réalisé à partir des bases de données des organismes et des établissements de santé (ramq, agence de la santé et des services sociaux, hôpitaux, clsc, centres de jour, etc.). pour les centres de jour, les données d’utilisation proviennent des données statistiques recueillies de façon routinière par quatre des cinq centres de jour qui desservent ce même territoire, à l’aide du logiciel jedi, conçu spécialement pour recueillir des données administratives sur les clients (ex. : adresse, téléphone, jours de fréquentation prévus), les activités et les présences aux centres de jour. les mêmes informations ont été recueillies à partir du registre des présences et de l’horaire des activités consigné au dossier du client, pour le cinquième centre qui n’utilisait pas ce logiciel. nous avons planifié cette cueillette dans les dossiers cliniques du cinquième centre de jour en collaboration avec l’équipe du projet sipa, afin qu’elle réponde à la fois aux besoins de notre étude et à ceux du projet sipa. de plus, nous avons effectué des entrevues avec les coordonnateurs des cinq centres de jour à l’étude pour préciser diverses caractéristiques organisationnelles de ces centres : objectifs, critères d’admission et d’exclusion, liste d’attente, structure du personnel, capacité, caractéristiques des activités offertes, date des fermetures du centre de jour, coût, procédures pour le repas et les transports, etc. le guide d’entrevue est joint à l’annexe iii. définition des variables différentes variables sont mesurées pour chacun des trois groupes d’objectifs de cette étude. elles sont présentées au tableau iv. elles sont aussi décrites en détail à la section méthodologique de chacun des trois articles qui décrivent les résultats de cette thèse. le tableau iv présente chacun des concepts évalués, les variables retenues pour représenter le concept, les indicateurs ou les échelles de mesure utilisés, ainsi que les objectifs de l’étude pour lesquels ils ont été utilisés. lorsque des variables continues ont aussi été traitées de façon dichotomique, le score seuil pour identifier un problème selon la documentation scientifique (ex : Échelle de dépression gériatrique, short portable mental status questionnaire, etc.), ou en l’absence d’un tel score seuil, la valeur médiane observée dans l’échantillon pour la variable en question (ex : âge, capacités fonctionnelles, etc.), ont servi à diviser les participants en deux groupes. certaines variables indépendantes, décrites au tableau iv, ont été mesurées à l’aide d’outils de mesure standardisés. les qualités métrologiques de ces échelles de mesure sont présentées au tableau v. tableau iv : description des variables utilisation concepts variables et indicateurs source objectif objectif objectif variables dependantes contact avec le centre de jour présences au centre de jour : les participants qui ontau moins une présence au cj pendant la période d’observation sont définis comme utilisateurs registre présences: jedi dossiers du e cj x activités du centre de jour activités dont le participant a bénéficié lors de ses présences au centre de jour. registre activités: jedi dossiers du e cj x en variable indépendante, voir plus bas intensité de la participation conformité à la recommandation de participation, calculée en pourcentage : participation réelle / nombre de participations prévues pendant la période d’observation. les participations prévues sont fonction de la fréquence d’inscription, mais excluent les journées où le centre de jour était fermé, ainsi que celles où la personne était hospitalisée ou placée en hébergement temporaire, et donc dans l’impossibilité de fréquenter le centre de jour. participation réelle et fréquence d’inscription : - registres de présences dates de fermeture de cj : - entrevues aux coordonnateurs hospitalisations : - données medecho obtenues par sipa hébergements : - données de l’agence régionale obtenues par sipa x légende: x : utilisé dans toutes les analyses (descriptives, bivariées et multivariées) d : utilisé de manière descriptive et dans des analyses bivariées seulement les numéros indiqués après le nom d’un outil d’évaluation renvoient à la description de cet outil dans le tableau v. utilisation concepts variables et indicateurs source objectif objectif objectif variables independantes facteurs prédisposants de la personne âgée variables démographiques Âge (en années) : calculé avec date du questionnaire moins date de naissance Âge dichotomisé : ans et plus vs plus jeunes questionnaire sipa à la pa x d x x sexe : masculin ou féminin x x x structure sociale État civil : - célibataire (jamais marié) - marié ou conjoint de fait - veuf - séparé ou divorcé - religieux questionnaire sipa à la pa d d Éducation : scolarité sur une échelle à niveaux : : aucune : primaire non complété : primaire complété : secondaire : école technique ou école de métier : universitaire questionnaire sipa à la pa d d proportion avec éducation universitaire x Éducation - aucune ou primaire - secondaire ou école technique ou école de métier - universitaire x x profession antérieure : travail rémunéré que la personne âgée ou son conjoint (le cas échéant) ont exercé le plus longtemps au cours de leur vie, sur une échelle dichotomique: : au moins un membre du couple a travaillé dans le domaine de la santé ou des services sociaux : aucun membre du couple n’avait un travail dans le domaine de la santé ou des services sociaux questionnaire sipa à la pa x x proportion des répondants qui estime que leur revenu répond difficilement à leurs besoins questionnaire sipa à la pa d d utilisation concepts variables et indicateurs source objectif objectif objectif structure sociale (suite) appartenance culturelle : pays de naissance = canada ou autre x x x religion = catholique, juive ou autre d d langue d’usage: - français à la maison et avec professionnels - anglais à la maison et avec professionnels - anglais ou français avec les professionnels (pas à la maison) - autre langue à la maison, langue avec les professionnels est manquante - autre langue même avec les professionnels questionnaire sipa à la pa d d d réseau de soutien social de la personne âgée lien pa-ps - aucune ps - conjoint(e) - autre co-résident (enfant) - autre, non co-résident (enfant) questionnaire sipa à la pa : question sur le type de lien (conjoint, enfant, autre) et sur la cohabitation avec la personne. d d d les personnes qui n’ont aucune ps sont exclues de cette analyse lien pa-ps dichotomisé : cohabite ou non lien pa-ps dichotomisé : conjoint ou non x x x x utilisation antérieure du cj utilisation antérieure du cj pour un autre épisode de soins survenu entre et t : - contact (une seule visite enregistrée pour cet autre épisode) - participation (plus d’une visite lors de cet autre épisode) registre présences: jedi dossiers du e cj x capacité à suivre une activité de groupe dans le contexte canadien connaissance de l’anglais ou du français : à la question sur la langue d’usage décrite ci-dessus, les deux dernières catégories sont considérées comme n’ayant pas une connaissance suffisante de l’une ou l’autre des deux langues officielles questionnaire sipa à la pa x x légende: x : utilisé dans toutes les analyses (descriptives, bivariées et multivariées) d : utilisé de manière descriptive et dans des analyses bivariées seulement les numéros indiqués après le nom d’un outil d’évaluation renvoient à la description de cet outil dans le tableau v. utilisation concepts variables et indicateurs source objectif objectif objectif facteurs de besoin de la personne âgée santé physique problèmes de santé physique parmi une liste de problèmes tirée de l’étude epese (coroni-huntley et coll., ) : déjà eu cataractes mal jointures ou os (rhumatismes) problèmes de vessie, reins ou prostate problèmes de circulation maladie de cœur haute tension accident vasculaire cérébral (avc) problèmes respiratoires déjà eu problèmes d’estomac diabète déjà eu tumeur ou cancer fracture hanche ou fémur dans l’année déjà eu glaucome maladie de parkinson questionnaire sipa à la pa d d présence d’un avc analysé séparément x x nombre de problèmes sur , excluant avc de la liste x x nombre de problèmes sur : de la liste ci-dessus, glaucome et cataractes sont regroupés en un prob. valeur dichotomisée : ou plus vs ou moins d x deux types de problèmes de santé physique : -présence d’un problème qui entraîne des incapacités locomotrices (avc, parkinson et fracture de hanche ou de jambe récente) -présence d’au moins un autre problème parmi : maladie de cœur; problèmes respiratoires; diabète; tumeur; problèmes de vessie, de reins ou de prostate; problèmes d’estomac. x x hospitalisation : nombre de jours d’hospitalisation pendant la période d’observation hospitalisation : - données medecho obtenues par sipa x x x utilisation concepts variables et indicateurs source objectif objectif objectif santé mentale question de l’étude epese sur la présence de problèmes émotifs (incluant nervosité, dépression, anxiété, insomnie). questionnaire sipa à la pa x x présence de symptômes dépressifs tels qu’indiqués à l’Échelle de dépression gériatrique, version courte (edg/gds- ) (sheikh et yesavage, ) - variable continue : résultat à l’edg/ variables dichotomiques : - dépression probable ( ou plus à l’Édg) - dépression possible ( ou plus à l’Édg) questionnaire sipa à la pa d d données manquantes cotées comme absence de symptômes x troubles cognitifs présence de troubles cognitifs : pour les sujets qui répondent au questionnaire par eux- mêmes : selon le résultat au short portable mental status questionnaire (spmsq) (pfeiffer, ) lorsqu’un substitut répond au questionnaire : la raison est la détérioration cognitive ou une réponse positive à la question de l’étude epese sur la présence de problèmes de mémoire ou de maladie d’alzheimer, confirmée par un médecin questionnaire sipa à la pa x x x capacité fonctionnelle activités de la vie quotidienne originalement mesurées par l’indice de barthel (granger et coll., ) et activités de la vie domestique mesurées par items d’avd du questionnaire older american resources and services (oars) (fillenbaum, ). pour créer un score unique incluant avq et avd, les résultats de l’indice de barthel ont été transformés pour obtenir l’équivalent des items d’avq du questionnaire oars et additionnés aux résultats d’avd du questionnaire oars. c’est ce résultat (oars / ) qui est utilisé dans les analyses. des scores partiels (avq, avd, incontinence) sont aussi présentés dans certains tableaux descriptifs. variable dichotomique: ou + vs ou - (/ ) questionnaire sipa à la pa x d x x d légende: x : utilisé dans toutes les analyses (descriptives, bivariées et multivariées) d : utilisé de manière descriptive et dans des analyses bivariées seulement les numéros indiqués après le nom d’un outil d’évaluation renvoient à la description de cet outil dans le tableau v. utilisation concepts variables et indicateurs source objectif objectif objectif capacité fonctionnelle (suite) problèmes sensoriels : - aucun problème sensoriel - au moins un prob. avec un peu de difficulté - au moins un prob. avec beaucoup de difficulté variable dichotomique isolant « beaucoup de difficulté dans au moins une sphère sensorielle » x x x d x difficulté de communication - aucune - un peu de difficulté - beaucoup de difficulté variable dichotomique isolant « beaucoup de difficulté » questionnaire sipa à la pa : questions demandant à la personne si elle a pas, peu ou beaucoup de difficulté à reconnaître les personnes, à lire, à entendre ou à se faire comprendre lorsqu’elle parle, même en utilisant les aides techniques appropriées (lunettes, appareil auditif) s’il y a lieu x d x facteurs de besoin de la personne de soutien variables démographiques Âge : calculé avec date du questionnaire moins date de naissance (en années) x sexe : masculin ou féminin questionnaire sipa à la ps x capacité fonctionnelle activités de la vie quotidienne originalement mesurées par l’indice de barthel (granger et coll., ) et activités de la vie domestique mesurées par items d’avd du older american resources and services (oars) questionnaire (fillenbaum, ). pour créer un score unique incluant avq et avd, les résultats de l’indice de barthel ont été transformés pour obtenir l’équivalent des items d’avq du questionnaire oars et additionnés aux résultats d’avd du questionnaire oars. c’est ce résultat au oars sur qui est utilisé dans les analyses. des scores partiels (avq, avd, incontinence) sont aussi présentés dans certains tableaux descriptifs. questionnaire sipa à la ps x d durée de l’aide calculée en années et mois à partir de la réponse à la question : quand êtes-vous devenu sa personne de soutien principale sur une base continue? questionnaire sipa à la ps x utilisation concepts variables et indicateurs source objectif objectif objectif fardeau ressenti mesuré par l’inventaire du fardeau (burden interview) (zarit et coll., ) questionnaire sipa à la ps x aussi estimé par l’utilisation ou non d’hébergement - présence ou non d’épisodes d’hébergement temporaire - hébergement dans les trois mois suivant le questionnaire hébergement : - données de l’agence régionale obtenues par sipa x x x caractéristique du centre de jour disponibilité du service admissibilité au cj du territoire : cj du territoire accepte ou non - les personnes qui présentent de l’incontinence fécale - les personnes qui ont besoin d’être transférées à l’aide de deux personnes - les personnes qui ont besoin d’aide pour manger d liste d’attente : durée moyenne, en mois, de l’attente pour être admis au cj de son territoire à l’été entrevues aux coordonnateurs des cinq centres de jour d coût tarif exigé par jour pour le repas et le transport par le cj du territoire entrevues aux coordonnateurs des cinq centres de jour x téléphones de rappel fait partie du bassin d’un cj qui : - n’appelle pas les participants - appelle les cas particuliers - appelle tous les participants entrevues aux coordonnateurs des cinq centres de jour d structure du personnel ratio personnes âgées inscrites par jour / etc ratio personnes âgées présentes par jour / etc d % de personnel de soins % de personnel de réadaptation % d’intervenants en loisirs % d’intervenants psychosociaux % de personnel administratif et de soutien entrevues aux coordonnateurs des cinq centres de jour d durée des activités offertes durée d’une visite type au cj, en heures durée d’une visite type : - demi-journée ( , heures ou moins) - journée complète (plus de , heures) entrevues aux coordonnateurs des cj : durées habituelles de chacun des programmes proposés par les cj, mis en lien avec les registres de présences pour la durée d’une visite type pour chaque personne d x légende: x : utilisé dans toutes les analyses (descriptives, bivariées et multivariées) d : utilisé de manière descriptive et dans des analyses bivariées seulement les numéros indiqués après le nom d’un outil d’évaluation renvoient à la description de cet outil dans le tableau v. utilisation concepts variables et indicateurs source objectif objectif objectif fréquence de l’inscription nombre de journées par semaine pour lesquelles des activités en cj sont prévues pour la personne registres de présences : jedi dossiers du e cj x x activités du centre de jour variable dichotomique indiquant si l’individu a participé ou non à chacun des types d’activités pour les personnes qui y ont participé, l’intensité de la participation à chaque type d’activité est calculée par le pourcentage suivant : présences au cj au cours desquelles la personne a participé à ce type d’activité/ présences totales au cj. a. exercices physiques b. groupes spécifiques pour un diagnostic physique ou un problème fonctionnel particulier c. activités fonctionnelles d. stimulation cognitive e. activités musicales ou de réminiscence f. sports et jeux physiques g. intégration sociale h. prévention et promotion de la santé registres des activités : jedi dossiers du e cj d x d x caractéristiques des services du clsc intensité de la gestion de cas participant sipa reçoit l’intervention sipa (groupe expérimental) ou l’intervention habituelle (groupe contrôle) fichier de recrutement sipa x x x intensité des services fréquence de l’aide du clsc pour les activités quotidiennes et domestiques (nombre de jours par semaines) fichier sipa des données du clsc avec les dates et codes de services reçus du clsc dans les catégories avq et avd x x x aide pour avq les jours de fréquentation du cj reçoit ou non une aide régulière du clsc pour se préparer au cj: cette aide est considérée présente si elle est observée sur une base régulière pour au moins une des journées où la personne est inscrite au centre de jour fichier sipa des données du clsc avec les dates et codes de services reçus du clsc dans les catégories avq et avd, mis en lien avec les données des registres de présences en cj x tableau v : qualité des instruments de mesure . Échelle de dépression gériatrique, version courte (sheikh et yesavage, ) : l’échelle de dépression gériatrique originale contient énoncés qui évaluent la présence de symptômes dépressifs. cette échelle a démontré une bonne consistance interne (alpha de chronbach = . ) et une bonne fidélité test-retest ( . , à une semaine d’intervalle) (yesavage, brink, rose, lum, huang, adey et leirer, ). la version française (bourque, blanchard et vézina, ) démontre aussi de bonnes qualités métrologiques. la forme courte, qui comporte énoncés, est fortement corrélée (r= . ) à l’évaluation originale (sheikh et yesavage, ). les résultats possibles pour la forme courte vont de à . un résultat plus élevé indique plus de symptômes dépressifs. . short portable mental status questionnaire - spmsq (pfeiffer, ) : ce questionnaire comporte questions évaluant principalement la mémoire et l’orientation. la fidélité de cette échelle est démontrée par un alpha de cronbach de . pour la consistance interne (foreman, ), une fidélité test-retest à quatre semaines d’intervalle de . (pfeiffer, ) et une fidélité interjuges entre . et . (fillenbaum et smyer, ). pfeiffer ( ) suggère qu’un résultat de trois erreurs ou plus indiquerait possiblement un déficit cognitif pour une personne qui a une éducation de niveau secondaire. il suggère de permettre une erreur de plus aux personnes qui n’ont pas fréquenté l’école secondaire et une erreur de moins à ceux qui ont fréquenté le collège ou l’université. il recommande aussi d’accorder une erreur de plus aux afro- américains. nous avons adapté cette correction pour l’origine ethnique au contexte multiethnique de montréal, en accordant une erreur de plus aux sujets qui ne sont pas nés au canada. en utilisant les critères suggérés par pfeiffer, foreman ( ) a obtenu un coefficient de prévision d'un test positif de . . . indice de barthel : la version utilisée est celle décrite par granger, albrecht et hamilton ( ), qui comporte questions évaluant la capacité à réaliser diverses activités de la vie quotidienne comme se lever d’une chaise, se déplacer à l’intérieur et à l’extérieur de la maison, utiliser la toilette, se laver, s’habiller, etc. les résultats possibles vont de à , un résultat plus élevé indiquant une plus grande autonomie. cette échelle a démontré une bonne fidélité test-retest ( . ) et une bonne fidélité interjuges (au-dessus de . ) (granger et coll., ). . older american resources and services - oars (fillenbaum, ) : cette échelle comporte énoncés qui évaluent la capacité à réaliser diverses activités de la vie quotidienne (s’habiller, manger, contrôler ses sphincters, etc.) et énoncés qui évaluent la capacité à réaliser diverses activités de la vie domestique comme utiliser le téléphone, utiliser les moyens de transport, magasiner ou faire l’épicerie, préparer les repas, etc. les résultats possibles vont de à , un résultat plus élevé indiquant une plus grande autonomie. l’ensemble du questionnaire oars a démontré une bonne fidélité test-retest ( . , à semaines d’intervalle) et la section des soins personnels (énoncés de vie quotidienne et de vie domestique) a démontré une fidélité interjuges de . (fillenbaum, ). . inventaire du fardeau (burden interview) (zarit, orr et zarit, ) : cet instrument comporte énoncés qui évaluent le fardeau subjectif ressenti par les personnes de soutien. hébert, bravo et girouard ( ) rapportent une bonne consistance interne (alpha de cronbach de . à . ) et une bonne fidélité test- retest ( . à . ) pour les versions anglaise et française de cet instrument de mesure. les résultats possibles vont de à , un résultat plus élevé indiquant un plus grand fardeau ressenti. notes : . les numéros réfèrent aux numéros de renvois utilisés dans le tableau iv. analyse des données les méthodes d’analyses de données sont décrites en détail à la section méthodologique de chacun des trois articles inclus à la section des résultats de cette thèse. elles sont résumées brièvement ci-dessous. article : pour la première étape qui vise à connaître les taux d’utilisation du centre de jour par la clientèle cible, des statistiques descriptives (moyenne, fréquence avec intervalle de confiance) ont été calculées. pour décrire qui sont ces utilisateurs, des statistiques descriptives (moyenne, fréquence) ont été calculées. les différences entre les utilisateurs et les non-utilisateurs ont été étudiées de façon bivariée à l’aide de tests de student (test de t) et de tests du chi carré. pour mieux comprendre les effets de ces variables sur le fait d’avoir utilisé ou non le centre de jour pendant la période d’observation, des analyses multivariées (régressions logistiques multiples) ont ensuite été effectuées. article : pour vérifier si les individus ayant un ensemble de caractéristiques similaires reçoivent des services similaires des centres de jour, des analyses en regroupement (cluster analysis) ont été d’abord été effectuées pour regrouper les clients les plus semblables en fonction de diverses variables sociodémographiques et de santé. des analyses de variance (anova) ont confirmé les différences significatives dans les caractéristiques des membres de chacun des groupes créés par ces analyses. en second lieu, les diverses activités de groupe offertes dans les cinq centres de jour à l’étude ont été regroupées en huit grandes catégories d’activités, dans un processus à trois étapes : ) validation des données : les registres d’activités des cinq centres de jour contenaient noms différents d’activités. les rencontres avec les coordonnateurs de cinq centres de jour ont permis de comprendre ce qu’était chacune de ses activités : but de l’activité, clientèle visée, exemples de sous-activités. par exemple, dans un centre, l’activité « sports » comportait des jeux de quilles, du volleyball adapté, du curling adapté, etc. ) regroupement des activités similaires portant des noms différents : les registres d’activités des cinq centres de jour participants contenaient noms différents d’activités. les rencontres avec les coordonnateurs de cinq centres de jour ont permis de regrouper les activités similaires qui portaient des noms différents dans les registres statistiques (par exemple, les activités « mémo », « méli-mélo », « intello », « cognitif » sont toutes des activités de stimulation cognitive). ces rencontres ont permis de réduire la liste d’activités de à activités différentes. ) regroupement des activités selon leurs buts : ces activités ont à nouveau été regroupées en huit grandes catégories, en fonction de leurs buts. ce regroupement a été effectué par consultation d’un groupe d’experts constitué de sept responsables de centre de jour de la région de montréal, au moyen d’une méthode adaptée de la technique du groupe nominal (delbecq, van de ven et gustavson, ). par la suite, pour identifier les types d’activités dont ont bénéficié les participants à cette étude, des statistiques descriptives ont été calculées : ) pour l’ensemble des utilisateurs de centre de jour, le nombre et le pourcentage d’individus ayant participé à chacune des catégories d’activités et ) pour les individus ayant participé aux activités d’une catégorie donnée, la moyenne de l’intensité d’exposition à cette catégorie d’activités. À cette fin, le nombre de jours auxquels chaque individu a participé à chacune des huit grandes catégories d’activités a été dénombré. pour tenir compte de la variation de participation des individus, le nombre de participations à chacune des catégories d’activités a ensuite été calculé en pourcentage des jours de présence au centre de jour. cette variable donne une indication de l’intensité de l’exposition à chacune des activités (elle ne tient cependant pas compte de la durée de chacune des activités au cours d’une journée). des anova ont permis de déterminer les différences significatives entre les divers profils de participants créés par les analyses en regroupement, pour la participation et l’intensité d’exposition à chaque type d’activité des individus ayant participé au moins une fois aux activités de chacune des catégories. enfin, les résultats de ces analyses ont été comparés aux types d’activités à privilégier pour les clientèles de chacun des six sous-programmes du cadre de référence des centres de jour (acaq, ), selon ce document ainsi que selon le groupe d’experts décrit ci-dessus. article : pour connaître les déterminants de la régularité de la participation (mesurée par le pourcentage de présences réelles sur le nombre de présences attendues en fonction de la fréquence d’inscription), des analyses des relations bivariées entre les variables indépendantes et la variable dépendante ont d’abord été effectuées. pour mieux comprendre les effets de ces variables sur la participation au centre de jour, des analyses de régressions linéaires multiples ont été réalisées. les variables indépendantes incluaient les caractéristiques des utilisateurs et de leur personne de soutien, ainsi que certaines caractéristiques des services reçus, dont le type d’activités décrit en fonction des huit grandes catégories d’activités définies dans l’article . toutes les analyses statistiques ont été effectuées à l’aide du logiciel spss pour windows, allant de la version . pour le premier article, à la version . pour le dernier article. considérations éthiques ce projet repose sur une analyse secondaire de données. le projet sipa a reçu toutes les approbations éthiques nécessaires. les sujets du projet sipa ont consenti à répondre aux questionnaires sur leur état de santé et à ce que les chercheurs recueillent des informations sur leur utilisation des services de santé. la cueillette supplémentaire de données dans les dossiers des centres de jour est effectuée par la même équipe de recherche. de plus, l’utilisation des données du projet sipa aux fins de la présente recherche a obtenu une approbation distincte du comité d’éthique de l’hôpital général juif – sir mortimer b. davis. chapitre : résultats les résultats de chacun des objectifs de cette étude sont présentés dans les trois articles inclus à cette section. l’article rapporte les résultats obtenus en lien avec le premier objectif de l’étude qui vise à connaître la proportion d’utilisateurs de centre de jour ainsi que les déterminants de l’utilisation au sein d’un groupe de personnes âgées de ans et plus de la région de montréal qui participaient au projet sipa. cet article est publié dans le numéro d’automne de la revue canadienne du vieillissement. au moment de soumettre cet article, la réflexion sur le cadre conceptuel présenté aux pages à de la présente thèse n’était pas terminée. ainsi, on notera que ce qui est décrit dans cet article comme des facteurs de capacité de nature organisationnelle est plutôt présenté simplement comme des caractéristiques des services dans la présentation du cadre conceptuel aux pages à . l’article présente les résultats obtenus en lien avec le second objectif qui cherche à vérifier l’adéquation entre les activités offertes par les centres de jour et les caractéristiques des utilisateurs, pour participants des cinq centres de jour. une classification des activités a été créée par un groupe d’experts. la participation à ces activités a été étudiée pour divers groupes d’utilisateurs créés par des analyses en regroupement. la version révisée de cet article a été soumise à la revue canadienne du vieillissement le octobre . l’article rapporte les résultats du troisième objectif de recherche qui vise à définir les déterminants de la régularité de la participation au centre de jour, parmi un groupe de personnes âgées de ans et plus pour lesquels des données sur la personne de soutien et sur la fréquentation du centre de jour sont disponibles. la régularité de participation est calculée en pourcentage des présences réelles sur le nombre de participations attendues, compte tenu de la fréquence de l’inscription et des jours où le centre de jour est fermé, ainsi que des jours où la personne est hébergée ou hospitalisée et donc dans l’impossibilité de fréquenter le centre de jour. cet article à été soumis le octobre au journal of aging and health. rôle joué par chaque auteur dans la rédaction de ces articles. jacinthe savard a développé les idées et la conceptualisation des questions de recherche, elle a réalisé les analyses de données et assuré la rédaction des trois articles. nicole leduc et paule lebel, codirectrices de recherche de l’étudiante, l’ont guidée pendant toute la durée de son projet de doctorat. À ce titre, elles ont participé à développer les idées et à conceptualiser les questions de recherche, elles ont guidé l’étudiante particulièrement pour la réalisation des analyses et ont assuré plusieurs révisions des trois articles. françois béland, howard bergman et paule lebel ont conceptualisé et dirigé le projet sipa duquel sont tirées la majorité des données utilisées pour cette recherche. À ce titre, ils ont été actifs dans le choix des outils de mesure et des méthodes de collectes de données utilisés pour cette recherche. françois béland et howard bergman aussi participé à la rédaction des trois articles en révisant les versions préliminaires et en apportant des commentaires judicieux qui ont permis de clarifier la présentation et la discussion des résultats de chacun de ces articles. article l’utilisation des services de centre de jour par les personnes âgées qui présentent des incapacités. jacinthe savard , nicole leduc , paule lebel , françois béland , howard bergman , groupe de recherche solidage, faculté de médecine, université de montréal et université mcgill clinique universitaire interprofessionnelle de réadaptation, université d'ottawa groupe de recherche interdisciplinaire en santé (gris), faculté de médecine, université de montréal centre d’expertise sur la santé des personnes âgées et des aidants (cespa), institut universitaire de gériatrie de montréal division of geriatric medicine, université mcgill et jewish general hospital, montréal soumis : / / , accepté pour publication : / / publié : canadian journal on aging / la revue canadienne du vieillissement, ( ), - ( ) abstract this study consists of a secondary analysis of data collected during the sipa demonstration project. its purpose is to identify the proportion of adult day care (adc) users as well as the determinants of use in this group of persons years old and over receiving home care services in montreal. results show that . % of the sample have at least one adc presence during a months study period. the following factors increase the probability of adc use: being younger; not having a university degree; being born outside of canada or for persons born in canada, living with a caregiver; receiving help from the clsc for daily life activities more than once a week; being in the catchment population of an adc which fees are lower; and for men only, having had a stroke or presenting more functional incapacities. rÉsumÉ cette étude consiste en une analyse secondaire de données recueillies dans le cadre du projet sipa. elle vise à identifier la proportion d’utilisateurs de centres de jour (cj) ainsi que les déterminants de l’utilisation au sein de ce groupe de personnes âgées de ans et plus de la région de montréal qui reçoivent des services de maintien à domicile. les résultats montrent que , % de l’échantillon ont au moins une présence en cj pendant la période d’observation de six mois. les facteurs suivants augmentent la probabilité d’utiliser le cj: être plus jeune; ne pas avoir une éducation universitaire; être né à l’extérieur du canada ou, pour les personnes nées au canada, cohabiter avec une personne de soutien; recevoir l’aide du clsc pour les activités de vie quotidienne plus d’une fois par semaine; faire partie du bassin de desserte d’un cj dont les coûts sont moins élevés; et pour les hommes seulement, avoir déjà subi un accident vasculaire cérébral et présenter davantage d’incapacités fonctionnelles. mots clés : vieillissement, centre de jour, personnes âgées, maintien à domicile keywords: aging, adult day care, frail seniors, community long-term care remerciements pour mener à bien cette étude, la première auteure a reçu une bourse de recherche doctorale de la societé alzheimer du canada et une du groupe de recherche solidage. cette étude utilise des données du projet sipa, financé par le fonds d’adaptation des services de santé de santé canada, la fondation canadienne de recherche sur les services de santé et le ministère de la santé et des services sociaux du québec. les auteurs remercient luc dallaire et john fletcher, coordonnateurs de recherche du projet sipa, pour leur aide précieuse relative à la gestion et à la transmission des données. de plus, ils remercient anne-marie boivin, christian-paul gaudet, mélanie léonard, manon pouliot et tina tenenbaum, coordonnateurs de centres de jour pour avoir partagé des informations sur le fonctionnement de leur centre de jour, ainsi que jacinthe auger, christian-paul gaudet et tina tenenbaum pour leurs commentaires sur les résultats de l’étude. introduction confrontés au vieillissement de la population et aux besoins particuliers des personnes âgées, la plupart des pays industrialisés ont développé une gamme variée de services gérontologiques et gériatriques qui visent le maintien de l’autonomie et de la qualité de vie de cette population. parmi ces services, on retrouve le centre de jour (cj), un service offert aux personnes âgées qui demeurent à domicile et présentent des incapacités. les interventions en cj sont offertes principalement au moyen d’activités de groupe et comprennent des activités de surveillance de l’état de santé, des activités d’enseignement et de prévention, des activités de réadaptation visant essentiellement le maintien des capacités, des interventions psychosociales et de loisirs, ainsi que du répit et du soutien aux familles (gutman, milstein, killam, lewis et hollander, b; regroupement des centres d'hébergement et de soins de longue durée région de montréal, ). par ces interventions, le cj vise à favoriser le maintien dans la communauté des personnes âgées qui présentent des incapacités. les études sur l’efficacité des cj pour réduire ou retarder l’institutionnalisation de la clientèle ou pour réduire le fardeau des personnes de soutien ont démontré des résultats variables. dans plusieurs études, même lorsque ce service est accessible, les taux d’utilisation par la clientèle âgée sont faibles (baumgarten, lebel, laprise, leclerc et quinn, ; douglass et visconti, ; lawton, brody et saperstein, ; montgomery et borgotta, ). toutefois, lorsque les chercheurs ont contrôlé les taux d’utilisation, plusieurs ont pu démontrer des effets positifs à la fréquentation du cj (baumgarten et coll., ; wimo, mattsson, adolfsson, eriksson et nelvig, ; zarit, stephens, townsend, greene et leitsch, ). dans un tel contexte, il importe de se questionner sur les caractéristiques des utilisateurs de cj afin de mieux cibler les personnes les plus susceptibles d’en bénéficier ou encore de revoir l’offre de service de façon à mieux l’adapter aux besoins de la clientèle cible. les quelques recherches qui ont porté sur les facteurs qui influencent l’utilisation des cj ont utilisé des méthodologies variées. plus particulièrement, la définition de l’utilisation et du groupe de comparaison varie d’une étude à l’autre. ainsi, nous avons identifié deux études qui ont comparé les utilisateurs de cj aux utilisateurs de services à domicile qui ne participent pas au cj. dans une étude canadienne des années , les utilisateurs de cj sont généralement moins instruits et sont moins nombreux à avoir œuvré dans des postes professionnels ou de gestion que les utilisateurs de services à domicile. ils sont aussi plus nombreux à être nés au canada et ils présentent plus d’incapacités fonctionnelles (chappell, ). dans une étude américaine récente, les utilisateurs de cj sont généralement plus jeunes et présentent davantage de troubles cognitifs que les personnes qui utilisent uniquement les soins à domicile. bien que les capacités fonctionnelles des deux groupes soient similaires selon les échelles d’activités de la vie quotidienne (avq) et d’activités de la vie domestique (avd), les utilisateurs de soins à domicile sont hospitalisés plus souvent et utilisent plus d’équipement médical ou d’aides techniques (dabelko et balaswamy, ). ces résultats sont cohérents avec le fait que les personnes qui fréquentent le cj doivent posséder certaines capacités de déplacement. même lorsqu’un transport adapté est offert par le cj, il est plus difficile de déplacer des personnes qui utilisent d’avantage d’équipement médical ou celles qui se sentent fragiles en raison d’une hospitalisation récente. d’autres études, centrées sur des groupes d’utilisateurs de cj, ont identifié certains facteurs qui distinguent les forts utilisateurs des plus faibles utilisateurs. selon ces études, les facteurs associés à une plus forte utilisation étaient : des scores de dépression légèrement supérieurs; des scores d’anxiété légèrement inférieurs; des atteintes cognitives plus grandes (baumgarten et coll., ); moins de problèmes de comportement (lawton, brody et saperstein, ; zarit et coll., ); la présence d’une personne de soutien; un plus grand fardeau ressenti par cette personne (baumgarten et coll., ); le fait d’avoir des enfants; et le fait d’être inscrit à raison de jours par semaine (wallace, ). des études sur l’utilisation de services de répit par les aidants familiaux ont aussi démontré que les aidants de personnes atteintes de troubles cognitifs ont utilisé davantage le cj que les autres groupes de sujets (montgomery, kosloski et borgotta, - ) et que les aidants qui disent avoir été influencés par un membre de leur réseau informel ou par un professionnel utiliseraient davantage le cj que ceux qui ne rapportent pas l’influence d’une tierce personne sur leur utilisation de services (cotrell et engel, ). de plus, dans une étude qualitative de cotrell ( ) auprès d’une clientèle atteinte de démence, les personnes de soutien qui sont des enfants corésidents indiquent une préférence pour le cj plutôt que d’autres formes de répit pour les bienfaits résultant de la socialisation qu’il procure à leur parent, tandis que les conjoints qui ont besoin de répit semblent préférer le répit à domicile qui leur permet de quitter la maison ou de vaquer librement à certaines occupations domestiques. il faut noter qu’à l’exception des travaux de baumgarten et collaborateurs ( ) et de chappell ( ), ces résultats proviennent d’études américaines. les autres études canadiennes recensées au sujet des cj (gutman, milstein, killam, lewis et hollander, a; b; tourigny, côté, laberge, paradis et joubert, ) n’abordent pas les facteurs qui influencent l’utilisation. nous ne savons pas si la dynamique d’utilisation des services observée aux États-unis est similaire à celle du québec et du canada. en effet, il existe une variété de modèles de cj aux États-unis : modèle social, modèle médical, centres spécifiques pour les personnes atteintes de démence (gaugler et zarit, ; weissert et coll., ). au québec et ailleurs au canada, les cj sont plutôt génériques, c’est-à-dire qu’ils acceptent une clientèle variée et adaptent leurs activités aux besoins diversifiés de cette clientèle. on constate donc que les cj offrent à la fois des services habituellement considérés comme des services de santé (suivi infirmier de l’état de santé, activités de réadaptation) et des services de nature plus sociale (activités de socialisation pour des personnes isolées en raison d’une perte d’autonomie importante, répit aux personnes de soutien). la majorité des activités sont offertes sous forme d’activités de groupe et la plupart des personnes âgées qui y participent reçoivent plus d’un type de services. de plus, aux États-unis la participation à ces services, offerts dans un marché compétitif, est parfois limitée par la capacité financière des individus. au québec, elle est plutôt limitée par la capacité d’accueil des centres qui ont souvent des listes d’attente, bien que les coûts reliés au transport et aux repas (généralement inférieurs aux coûts des cj aux États-unis) puissent aussi représenter des barrières à l’utilisation. par conséquent, les facteurs qui influencent l’utilisation des cj dans le contexte québécois et canadien, restent encore à définir. les objectifs de la présente étude sont d’identifier la proportion d’utilisateurs de cj parmi une clientèle âgée vulnérable de la région de montréal, de caractériser ces utilisateurs et d’analyser les déterminants de l’utilisation du cj. les résultats fourniront des pistes de réflexion pour les intervenants qui dirigent les personnes âgées vers ce type de service. le modèle élaboré par andersen dès pour expliquer l’utilisation de services médicaux et repris ensuite par andersen et plusieurs collègues (voir andersen, ) permet une conceptualisation globale intéressante de trois types de facteurs qui peuvent expliquer l’utilisation des services de santé: les facteurs prédisposants; les facteurs de capacité (enabling factors); et les facteurs de besoin. toutefois, la façon dont ces facteurs influencent l’utilisation des services médicaux et l’utilisation du cj peut différer grandement, ne serait-ce que parce que dans le contexte québécois, la demande pour fréquenter le cj est plus rarement initiée par la personne elle-même, mais provient plus souvent d’une recommandation d’un professionnel de la santé. dans cette étude, la typologie de facteurs décrite par anderson et ses collègues sera adaptée aux caractéristiques particulières des cj, pour identifier les variables à inclure dans l’analyse des déterminants de l’utilisation des cj (voir figure ). selon ce modèle adapté, les facteurs prédisposants sont des facteurs qui sont présents avant que le besoin de services ne se fasse sentir. ils influencent la propension à utiliser les services, mais aussi l’état de santé de la personne âgée, donc le niveau de besoin pour les services offerts en cj. les facteurs de besoin sont reliés à l’état de santé de la personne âgée et aux besoins que le cj tente de combler. on remarque que l’état de santé peut aussi influencer certaines caractéristiques sociales, comme le fait de vivre avec une personne de soutien. par ailleurs, les facteurs de capacité inclus dans cette étude sont reliés aux caractéristiques organisationnelles des services qui peuvent faciliter ou limiter l’accès aux services. dans le cas de l’utilisation du cj, nous émettons l’hypothèse qu’elles interagiront avec les facteurs prédisposants et les facteurs de besoin pour modifier les taux d’utilisation. en effet, on peut penser par exemple qu’à besoin égal, une moins grande proportion de sujets utiliseront le cj si ce dernier présente une liste d’attente plus longue. toutefois, si les cj ont établi des critères de priorité, l’effet de la liste d’attente pourrait être différent chez les personnes dont le niveau de besoin est plus faible que chez celles dont le niveau de besoin est plus élevé. de même, il est possible que des services plus intensifs de soutien à domicile puisse apporter un suivi qui serait de nature à favoriser l’identification plus rapide des besoins et une meilleure adhésion aux recommandations et donc, à besoin égal, augmenter l’utilisation du cj. insérer la figure près d’ici méthodologie cette étude s’appuie sur des informations provenant de deux bases de données existantes : ) les données tant sociodémographiques que reliées à la santé physique et psychologique des personnes âgées recueillies dans le cadre du projet de démonstration services intégrés pour personnes âgées (sipa) . le projet sipa s’est déroulé de juin à mars , auprès de personnes âgées qui présentent des incapacités et résident sur deux territoires de centre local de services communautaires (clsc) de la région de montréal. environ la moitié de ces personnes ont reçu les services intégrés évalués dans le cadre du projet sipa, alors que l’autre moitié continuait de recevoir les services de maintien à domicile régulier de leur clsc. une équipe de recherche a complété une cueillette exhaustive de données comportant trois vagues de questionnaires auprès des personnes âgées, un questionnaire auprès des personnes de soutien, ainsi qu’un relevé de leur utilisation des services de santé pendant toute la durée de l’expérimentation, d’après les bases de données des organismes et des établissements de santé (régie de l’assurance maladie du québec, agence de développement des réseaux locaux de services de santé et de services sociaux, hôpitaux, cj, etc.). pour les personnes âgées incapables de répondre elles-mêmes aux questionnaires, un substitut a été utilisé. ) les données statistiques recueillies de façon routinière par quatre des cinq cj qui desservent ces deux mêmes territoires, à l’aide d’un logiciel commun : le jedi . ce logiciel fut conçu spécialement pour recueillir des données sur les clients, les activités et les présences aux cj. au moment de l’étude, il est utilisé par des centres de jour de l’Île de montréal. ces informations ont été complétées par une cueillette de données dans les dossiers du cinquième cj. de plus, des entrevues avec les coordonnateurs des cinq cj ont permis de préciser les caractéristiques des activités offertes, les procédures pour le repas et les transports et les critères d’admission spécifiques à chacun des centres. population à l’étude les personnes admises au projet de démonstration sipa devaient vivre à domicile au début de l’étude, recevoir des services de maintien à domicile de leur clsc et présenter des incapacités fonctionnelles, indiquées par un résultat de – ou moins au système de mesure de l’autonomie fonctionnelle (smaf) (hébert, carrier et bilodeau, ). elles devaient aussi accepter de participer à une étude randomisée sur les services intégrés pour personnes âgées et pouvoir s’exprimer en français ou en anglais avec les membres du projet sipa, ou avoir un proche en mesure de le faire (béland, bergman et lebel, ). il s’agit donc d’une partie de la population âgée habituellement identifiée comme présentant des limitations d’activités de modérées à graves. dans des études de population menées au canada, on a observé que de % à % des personnes âgées de plus de ans présentent de telles incapacités (béland, haldemann, et coll., ; développement des ressources humaines canada, ). pour cette étude sur l’utilisation des cj, l’échantillon de départ est composé de personnes âgées de ans ou plus, toujours suivies par l’équipe de recherche sipa à la fin de la première phase du projet, en mai . de ce nombre, personnes hébergées de façon permanente et personnes hospitalisées pour toute la durée de la période d’observation étaient dans l’incapacité de fréquenter un cj et ont été exclues de l’étude. de plus, personnes qui présentaient des données manquantes pour des variables importantes à l’étude ont été exclues des analyses. l’échantillon final comprend donc sujets. on observe certaines différences entre les sujets exclus en raison de données manquantes et les sujets inclus : les questionnaires exclus sont plus souvent remplis par des substituts ( % contre % pour les questionnaires inclus, p< , ). les sujets exclus sont plus nombreux à ne pas avoir une connaissance suffisante du français ou de l’anglais pour répondre par eux-mêmes au questionnaire ( , % vs , %, p= , ) et ils sont moins autonomes que les sujets inclus dans l’étude, mais cette différence est grandement due au plus grand nombre de sujets qui sont très dépendants ( à à l’échelle du older americans resources and services [oars]) ( , % vs , %). lorsque ces sujets ne sont pas considérés, la différence entre les deux groupes en terme d’autonomie fonctionnelle n’est plus significative. caractéristiques des centres de jour cinq cj desservent le territoire sur lequel cette étude a été menée. le nombre de personnes âgées inscrites chaque jour varie de à personnes par jour, selon les centres. le nombre moyen de présences réelles par jour varie de , à , . la fréquentation minimale pour une même personne varie d’une demi-journée à journée par semaine et la fréquentation maximale de à journées par semaine, selon les centres. la durée de chaque visite varie de , à heures par jour, pour les personnes inscrites pour la journée et de à , heures pour celles inscrites à la demi-journée, dans les centres qui offrent ce type de fréquentation. bien que chacun des centres décrive ses critères d’admission de façon légèrement différente, ce sont tous des centres qui visent le maintien à domicile des personnes âgées qui présentent des incapacités. deux centres acceptent les personnes de ans et plus, deux autres à partir de ans, alors qu’un autre exige un profil gériatrique sans mentionner un âge minimum. tous les centres mentionnent que les personnes doivent être en perte d’autonomie. un centre ajoute que cette perte d’autonomie fonctionnelle empêche de participer à d’autres activités offertes dans la communauté, tandis qu’un autre spécifie que les personnes admises ont besoin d’un environnement thérapeutique structuré en raison d’une perte d’autonomie temporaire ou permanente. trois des cinq cj de l’étude ont des critères d’admission spécifiques liés à la langue ou à la religion (anglophones, francophones, juifs). ces trois centres desservent le même territoire et acceptent les personnes allophones selon leur préférence pour un milieu anglophone ou francophone, de sorte que le service de cj est disponible pour la population âgée en perte d’autonomie de toute langue ou de toute religion sur ce territoire. en ce qui concerne les critères d’exclusion, aucun des centres n’accepte les personnes qui présentent des comportements qui pourraient perturber le groupe ou constituer un danger pour les autres participants. aucun n’accepte les personnes qui auraient besoin d’être transférées au levier pendant la journée puisqu’aucun ne possède ce type d’équipement. de plus, trois des cinq centres n’acceptent pas les personnes qui auraient besoin d’être transférées à l’aide de deux personnes pendant la journée, parce qu’ils n’ont pas le personnel nécessaire pour le faire. les transferts à l’aide d’une personne sont possibles dans tous les centres. tous les centres acceptent les personnes qui présentent de l’incontinence urinaire si elles portent les protections appropriées (p. ex : couches, serviettes hygiéniques). un seul refuse celles qui présentent de l’incontinence fécale. deux centres n’acceptent pas les personnes qui ont besoin d’aide pour se nourrir (c.-à.-d pour porter les aliments à leur bouche). tous acceptent les personnes qui ont besoin d’aide pour préparer l’assiette (c.-à.-d. couper la viande, beurrer le pain et ouvrir les contenants s’il y a lieu). le coût de chaque participation varie de $ à $ par jour, pour couvrir les frais de transport et de repas. tous les centres sont prêts à faire des ajustements à leur tarif pour accommoder les personnes qui éprouvent des difficultés financières. certaines personnes peuvent payer moins cher parce qu’elles n’utilisent pas le transport ou ne prennent pas le repas du cj. la durée moyenne d’attente pour être admis au cj à l’époque de l’étude variait d’environ un mois à an selon les centres. deux centres font des appels à tous les participants la veille ou le matin même, pour leur rappeler le jour de leur participation. un centre effectue de tels appels seulement pour les cas particuliers comme les individus qui ont des problèmes de mémoire et qui habitent seuls. les deux autres centres n’effectuent pas de relance téléphonique. les cj de cette étude peuvent compter sur un personnel variant de , à , équivalents à temps complet (etc). le ratio de personnes âgées inscrites par jour par membre de personnel varie de , à , . le ratio de personnes âgées présentes en moyenne par jour par membre de personnel varie de , à , . le personnel se répartit dans les catégories suivantes : personnel de soins ( , % à , %), personnel de réadaptation ( , % à , %), intervenants en loisirs ( , % à , %), intervenants psychosociaux ( % à , %) et personnel administratif et de soutien ( , % à , %). période d’observation les données relatives aux caractéristiques des personnes âgées ont été recueillies entre mai et novembre . pour chaque sujet, l’utilisation du cj a été observée pendant une période de six mois, dont le centre est la date du questionnaire à la personne âgée. comme l’état de santé des personnes en perte d’autonomie peut changer rapidement, il a semblé important d’utiliser la période d’observation de l’utilisation des cj la plus près possible du moment où les données sur l’état de santé ont été recueillies. variables à l’étude la variable dépendante est la participation au cj pendant la période d’observation. les sujets qui ont au moins une présence au cj pendant la période sont définis comme utilisateurs de cj, alors que ceux qui n’ont aucune présence sont définis comme non- utilisateurs, qu’ils aient ou non un dossier ouvert dans un cj pendant la période. les variables indépendantes considérées dans cette étude incluent les facteurs présdisposants, reliés aux caractéristiques sociales de la personne âgée; les facteurs de besoin, reliés aux caractéristiques de son état de santé, ainsi que les facteurs de capacités de nature organisationnelle reliés aux caractéristiques organisationnelles du cj de son territoire et au type de services qu’elle reçoit de son clsc (voir figure ). facteurs prédisposants ou caractéristiques sociales de la personne âgée les variables sociodémographiques considérées sont l’âge, le sexe, le niveau d’éducation, le fait pour la personne âgée ou son conjoint d’avoir exercé une profession du domaine de la santé, l’appartenance culturelle mesurée par le pays de naissance, la religion et la langue d’usage. la langue d’usage et le niveau d’éducation sont présentés sur des échelles à cinq et six niveaux respectivement pour les analyses descriptives. des variables dichotomiques ont aussi été créées, soit le fait d’avoir ou non une éducation universitaire et la connaissance ou non d’une des deux langues officielles. ce sont ces variables dichotomiques qui seront utilisées dans les analyses multivariées. enfin, une question demandant au sujet d’estimer si son revenu actuel lui permet de satisfaire ses besoins sera utilisée dans les analyses descriptives, mais ne pourra être utilisée dans les analyses multivariées en raison du grand nombre de réponses manquantes. en ce qui concerne le réseau social de la personne âgée, la présence ou non d’une personne de soutien et le type de lien avec celle-ci ont été regroupés pour former une variable à quatre niveaux : une personne de soutien qui est le conjoint de la personne âgée; une personne de soutien autre que le conjoint qui réside avec la personne âgée; une personne de soutien qui ne réside pas avec la personne âgée; ou pas de personne de soutien. l’état civil a été enregistré pour des fins descriptives seulement en raison de sa forte corrélation avec la variable précédente concernant le lien avec la personne de soutien. facteurs de besoin ou état de santé de la personne âgée pour évaluer la santé physique des personnes âgées, le questionnaire demandait aux répondants d’indiquer s’ils présentaient l’une ou l’autre des conditions suivantes tirées de l’étude established populations for epidemiologic studies of the elderly (epese) (coroni-huntley, brook, ostfeld, taylor et wallace, ). ces conditions incluent la présence de : haute tension artérielle; maladie de cœur; problèmes de circulation; accident vasculaire cérébral (avc); diabète; problèmes respiratoires; rhumatisme ou arthrite (douleur aux jointures ou aux os); tumeur ou cancer; problèmes émotionnels; maladie de parkinson; problèmes de mémoire ou maladie d’alzheimer; problèmes de vessie, de reins ou de prostate; cataractes; glaucome; problèmes d’estomac (gastrite, ulcères, hernie hiatale); fracture de hanche ou de jambe récente (dans la dernière année). pour les analyses multivariées, la présence d’avc, de problèmes émotionnels et de problèmes de mémoire ou de maladie d’alzheimer a été exclue de cette liste afin de pouvoir tester l’influence de ces problèmes de façon séparée. pour ces analyses, le total des réponses positives aux questions restantes donne le nombre de problèmes de santé. pour compléter ces informations sur la santé physique des participants, le nombre de jours d’hospitalisation du sujet pendant la période d’observation a été enregistré. la santé psychologique de la personne âgée est mesurée par une question tirée de l’étude epese qui demande si la personne souffre de problèmes émotionnels (nervosité, dépression, anxiété ou insomnie). de plus, pour les personnes qui répondaient elles-mêmes au questionnaire, la santé psychologique a aussi été mesurée par l’Échelle de dépression gériatrique, version courte (edg) (sheikh et yesavage, ). cette donnée n’étant disponible que pour certains sujets, elle ne sera utilisée que dans les analyses descriptives. l’échelle de dépression gériatrique originale ( énoncés) a démontré une bonne consistance interne (alpha de chronbach = , ) et une bonne fidélité test-retest ( , à une semaine d’intervalle) (yesavage et al., ). la forme courte, qui comporte énoncés, est fortement corrélée (r= , ) à l’évaluation originale (sheikh et yesavage, ). les résultats possibles pour la forme courte vont de à . un résultat plus élevé indique plus de symptômes dépressifs. la présence de troubles cognitifs est mesurée par le short portable mental status questionnaire (spmsq) (pfeiffer, ). ce questionnaire comporte questions évaluant principalement la mémoire et l’orientation. la fidélité de cette échelle est démontrée par un alpha de cronbach de , pour la consistance interne (foreman, ), une fidélité test- retest à quatre semaines d’intervalle de , (pfeiffer, ) et une fidélité interjuges entre , et , (fillenbaum et smyer, ). pfeiffer ( ) suggère qu’un résultat de erreurs ou plus indique possiblement un déficit cognitif pour une personne qui a une éducation de niveau secondaire. il suggère de permettre une erreur de plus aux personnes qui n’ont pas fréquenté l’école secondaire et une erreur de moins à ceux qui ont fréquenté le collège ou l’université. il recommande aussi d’accorder une erreur de plus aux africains- américains. cette correction pour l’origine ethnique a été adaptée au contexte multiethnique de montréal, en accordant une erreur de plus aux sujets qui ne sont pas nés au canada. en utilisant les critères suggérés par pfeiffer, foreman ( ) a obtenu un coefficient de prévision d'un test positif de , . pour les personnes qui n’avaient pas la capacité de répondre au spmsq (difficulté de communication reliées à la connaissance de la langue ou à un problème de santé), la présence de troubles cognitifs est enregistrée lorsque le questionnaire indique qu’un substitut est utilisé parce que la personne souffre de troubles cognitifs ou lorsqu’à la question tirée de l’étude epese sur les problèmes de mémoire, le substitut indique que la personne souffre de la maladie d’alzheimer ou de problèmes de mémoire attestés par un médecin. la capacité fonctionnelle est évaluée par l’échelle des soins personnels du older american resources and services (oars) (fillenbaum, ). cette échelle comporte sept énoncés qui évaluent la capacité à réaliser diverses activités de la vie quotidienne (s’habiller, manger, contrôler ses sphincters, etc.) et sept énoncés qui évaluent la capacité à réaliser diverses activités de la vie domestique (utiliser le téléphone, utiliser les moyens de transport, magasiner ou faire l’épicerie, préparer les repas, etc.). les résultats possibles vont de à , un résultat plus élevé indiquant une plus grande autonomie. l’ensemble du questionnaire oars a démontré une bonne fidélité test-retest ( , pour trois à huit semaines d’intervalle) et la section des soins personnels a démontré une fidélité interjuges de , (fillenbaum, ). pour compléter cette information, la présence de troubles sensoriels a aussi été évaluée en demandant aux répondants s’ils avaient aucune difficulté, un peu de difficulté, ou beaucoup de difficulté à reconnaître des personnes, à lire ou à entendre, même en utilisant les aides techniques appropriées (lunettes, appareil auditif) le cas échéant. une variable à trois niveaux a été créée : aucune difficulté pour aucune de ces trois activités; un peu de difficulté pour au moins une des trois activités; et beaucoup de difficulté pour au moins une des trois activités. la présence de troubles de la parole a été évaluée en demandant aux sujets s’ils avaient aucune, un peu, ou beaucoup de difficulté à se faire comprendre lorsqu’ils parlent. le fait d’être hébergé dans les trois mois suivants le questionnaire peut indiquer une détérioration de la capacité fonctionnelle ou une diminution de la capacité du réseau social à compenser les incapacités. cette information a été recueillie à partir des banques de données sur l’hébergement de l’agence de développement des réseaux locaux de services de santé et de services sociaux (adrlssss) de montréal, agence responsable de la coordination des demandes de placement pour l’ensemble de l’Île de montréal. facteurs de capacité de nature organisationnelle deux caractéristiques relevant des services reçus du clsc ont été considérées. la première est la fréquence de l’aide reçue du clsc pour les activités de vie quotidienne ou domestique. la seconde est le type de service reçu du clsc, le service régulier ou le service intégré expérimenté dans le cadre du projet sipa. en effet, on peut penser que le service intégré, par une gestion de cas plus personnalisée, aurait pu influencer la participation au cj. en ce qui concerne les caractéristiques organisationnelles des cj, les variables suivantes ont été considérées. le fait que le cj accepte ou non les personnes qui présentent de l’incontinence fécale, celles qui ont besoin d’être transférées à l’aide de deux personnes, celles qui ont besoin d’aide pour manger, sont observés de façon dichotomique. la présence d’appels aux participants pour leur rappeler leur journée de participation est observée sur une échelle à trois niveaux : pas d’appels, appels pour les cas particuliers, appels à tous les participants. la durée de la liste d’attente, le coût du cj et la disponibilité du personnel sont observés sur des échelles continues. la quantité de personnel disponible dans chacun des cj est mesurée en considérant le ratio du nombre de participants au cj sur le nombre d’employés en équivalents à temps complet (etc). le type de personnel disponible est calculé en pourcentage du total d’etc, pour chacune des catégories suivantes : personnel de soins (infirmières, assistantes-infirmières, préposés); personnel de réadaptation (ergothérapeute, physiothérapeute, thérapeute en réadaptation physique et moniteur en réadaptation); intervenants en loisirs (techniciens en loisirs, éducateurs spécialisés, musicothérapeutes); intervenants psychosociaux (travailleurs sociaux, baccalauréat en psychologie, etc.) et personnel administratif et de soutien (coordonnateur, secrétaire, chauffeur, aide en alimentation). analyse des données pour identifier la proportion d’utilisateurs de cj et décrire qui sont ces utilisateurs, des statistiques descriptives (moyenne, fréquence, intervalles de confiance) ont été calculées. les différences entre les utilisateurs et les non-utilisateurs ont été étudiées de façon bivariée à l’aide de tests de student (test de t) et de tests du chi-carré. pour mieux comprendre les effets de ces variables sur l'utilisation du cj, des analyses multivariées (régressions logistiques multiples) ont ensuite été effectuées, en respectant l’ordre du modèle conceptuel (figure ) pour l’introduction des variables dans ces analyses. ainsi, toutes les variables relatives aux caractéristiques sociales et de santé ont été d’abord entrées dans les analyses et les variables significatives à p< , après cette première étape d’analyse ont été conservées. de plus, comme le suggèrent hosmer et lemeshow ( ), certaines variables jugées importantes cliniquement et démontrant possiblement des interactions avec d’autres variables ont aussi été conservées à ce stade, bien qu’elles n’étaient pas statistiquement significatives dans ces premières analyses. la présence d’interactions parmi ces variables a ensuite été évaluée en entrant chacune des interactions possibles une à une dans les analyses de régression. les interactions qui individuellement paraissaient significatives à p< , ont alors été entrées simultanément dans le modèle. un modèle préliminaire contenant les caractéristiques sociales et de santé ainsi que leurs interactions est ainsi créé, en ne conservant que les termes significatifs à p< , . les variables organisationnelles ont ensuite été introduites dans le modèle et la procédure a été répétée pour tester l’influence de ces dernières et de leurs interactions. enfin, les variables qui n’atteignaient pas le seuil de signification de p< , ont été retirées du modèle. la qualité d’ajustement de ce modèle a été évaluée à l’aide du test de hosmer et lemeshow. en préalable à ces analyses, les associations entre les variables indépendantes ont été étudiées de façon à éviter les problèmes de multicolinéarité, et pour chacune des variables continues, la linéarité de la relation avec l’utilisation du cj a été évaluée. les analyses ont été effectuées à l’aide du logiciel spss pour windows, version . les résultats de l’étude ont été discutés avec les coordonnateurs de trois des cj inclus dans l’étude et les points importants de ces échanges sont présentés dans la discussion de cet article. résultats proportion d’utilisateurs de centre de jour parmi les sujets de l’étude, ont au moins une présence dans un cj pendant la période d’observation de mois, soit , % (ic : , % à , %) de l’échantillon. description de l’échantillon les principales caractéristiques des utilisateurs et des non-utilisateurs de cj, ainsi que de l’échantillon total sont présentées aux tableaux , et . la moyenne d’âge de l’échantillon est de , ans (± , ). comme on peut s’y attendre pour ce groupe d’âge, les participants sont en majorité des femmes ( , %) et des veuves ou veufs ( , %). l'étude ayant été menée dans deux quartiers très multiethniques de la ville de montréal, on observe que , % des sujets sont nés dans un pays autre que le canada. ces immigrants vivent au canada depuis plusieurs années (moyenne de , ans ± , ) et seuls , % sont au canada depuis ans ou moins. dans l’ensemble de l’échantillon, , % des participants utilisent le français à la maison, , % utilisent l’anglais et , % utilisent une autre langue seulement. seulement % à % des sujets ne semblent pas avoir une connaissance suffisante du français ou de l’anglais pour utiliser ces langues avec les professionnels de la santé. près de % des sujets ont identifié une personne de soutien principale. on observe que % des sujets sont mariés et que le conjoint est la personne de soutien pour % des personnes mariées ou , % de l’échantillon total. les enfants (filles et fils) sont la personne de soutien principale pour , % des sujets, et un peu plus des deux tiers d’entre eux n’habitent pas avec le parent dont ils prennent soin. insérer le tableau près d’ici les sujets de cette étude présentent en moyenne , (± , ) problèmes de santé parmi la liste présentée des conditions. on note que % des sujets ont déjà subi un avc. de plus, % présentent des problèmes émotionnels, alors que , % de ceux qui ont répondu à l’Édg obtiennent un résultat de plus de à cette échelle, ce qui révèle la présence probable de dépression. près de % de l’échantillon présentent des problèmes cognitifs. les capacités fonctionnelles des sujets sont très variées, les résultats allant de à à l’échelle des soins personnels oars. l’incontinence urinaire ou fécale affecte , % des sujets et les problèmes sensoriels importants touchent près du tiers de l’échantillon. insérer le tableau près d’ici différences entre utilisateurs et non-utilisateurs de centre de jour les utilisateurs de cj de notre échantillon sont en moyenne plus jeunes que les non- utilisateurs (tableau ). les utilisateurs de cj sont proportionnellement moins nombreux parmi les sujets qui détiennent une formation universitaire. ils sont proportionnellement plus nombreux chez les personnes qui ne sont pas nées au canada. on observe aussi que % des utilisateurs disent que leur revenu leur permet difficilement de répondre à leurs besoins, comparativement à seulement % des non-utilisateurs. la fréquence des problèmes de santé physique est similaire dans le groupe des utilisateurs et des non-utilisateurs, sauf en ce qui concerne la présence d’un avc. en effet, % des utilisateurs de cj ont déjà fait un avc, contre seulement % des non- utilisateurs (tableau ). en ce qui concerne la santé psychologique des sujets, la présence de problèmes émotionnels est similaire dans les deux groupes. toutefois, parmi les sujets qui ont répondu à l’Édg, les utilisateurs sont près de deux fois plus nombreux à présenter des symptômes indiquant la présence probable de dépression. les capacités fonctionnelles des utilisateurs de cj, mesurées à l’échelle oars, sont légèrement inférieures à celles des non-utilisateurs. une analyse graphique révèle que la relation entre l’utilisation du cj et les capacités fonctionnelles n’est pas parfaitement linéaire (figure ). en effet, de façon générale, les personnes qui présentent davantage d’incapacités utilisent le cj dans une plus grande proportion. toutefois, aucune des personnes dépendantes pour presque toutes les activités (résultat de à à l’échelle oars) n’utilise le cj. il faut cependant noter que ces personnes ne représentent que , % de l’échantillon. enfin, une analyse des résultats à chacune des questions de l’oars révèle que les utilisateurs de cj sont moins autonomes (p< , ) pour les activités suivantes : prendre un bain, préparer les repas et gérer leur argent. ils sont aussi plus nombreux à utiliser une orthèse ou une prothèse. insérer la figure près d’ici pour ce qui est des facteurs de capacités de nature organisationnelle, on observe que les utilisateurs de cj sont proportionnellement moins nombreux à ne recevoir aucune aide du clsc pour leurs activités de vie quotidienne ou domestique et plus nombreux à recevoir de l’aide plus d'une fois par semaine (tableau ). ils sont aussi proportionnellement plus nombreux à faire partie du bassin de recrutement d’un cj qui n’accepte pas les personnes ayant besoin d’être transférées à l’aide de personnes pendant la journée et d’un cj qui offre une plus forte proportion de personnel de réadaptation. insérer le tableau près d’ici facteurs qui influencent l’utilisation du centre de jour pour mieux comprendre les facteurs qui influencent l’utilisation des cj, des analyses de régression logistique ont été effectuées. les variables relatives aux caractéristiques sociales et de santé ont d’abord été introduites dans les analyses et les variables significatives à p< , après cette première étape ont été conservées, soit : l’âge, l’éducation, le pays de naissance, la connaissance du français ou de l’anglais et les capacités fonctionnelles. certaines variables jugées importantes cliniquement en raison de la possibilité d’interactions avec d’autres variables ont aussi été conservées à ce stade : le sexe, la cohabitation avec la personne de soutien, le nombre de problèmes de santé, la présence d’un avc, de problèmes émotifs et de troubles cognitifs. un modèle préliminaire contenant les caractéristiques sociales et de santé ainsi que leurs interactions est ainsi créé. les variables organisationnelles suivantes ont ensuite été introduites dans le modèle : le fait d’avoir reçu les services intégrés ou les services réguliers de clsc, ainsi que la fréquence de l’aide reçue du clsc pour les avq. les variables reliées aux caractéristiques des cj (critères d’exclusion, liste d’attente, coût, appels, ratio de personnel) sont fortement corrélées entre elles. par exemple, les deux cj qui ont les plus courtes listes d’attente sont aussi ceux qui ont les plus faibles coûts et font aussi partie des cj qui ont le plus grand ratio de personnes âgées par membre de personnel. l’influence de ces variables a donc dû être testée dans des modèles distincts pour éviter les problèmes de multicolinéarité. le modèle utilisant le coût présente les meilleures qualités d’ajustement. aucune des interactions entre les caractéristiques organisationnelles et les caractéristiques sociales ou de santé n’est apparue significative. le modèle ainsi créé est présenté au tableau . le tableau de contingence du test de hosmer et lemeshow indique qu’il s’ajuste bien aux données. de légers écarts (supérieurs à mais inférieurs à ) dans le nombre de participations observées par rapport à ce que le modèle théorique prédit sont observés pour les e et e déciles seulement. Étant donné la présence d’interactions, les ratios de cotes ajustés du tableau pour l’âge, le sexe, le pays de naissance, la cohabitation avec la personne de soutien, le nombre de problèmes de santé, la présence d’un avc et les capacités fonctionnelles ne peuvent être interprétés directement. les tableaux et présentent des ratios de cotes valables pour divers niveaux de ces variables. insérer le tableau près d’ici en s’attardant d’abord aux variables qui ne présentent pas d’interactions significatives avec les autres variables du modèle, on observe que, toutes autres choses étant égales, les personnes qui ont une éducation universitaire ont , ( / , ) fois moins de chances de fréquenter le cj que les personnes qui ont une éducation primaire, secondaire ou collégiale. de plus, les personnes qui reçoivent de l’aide du clsc pour leurs activités quotidiennes ou domestiques de deux à cinq fois par semaine ou six à sept fois par semaine ont respectivement , et , fois plus de chances de fréquenter le cj que les personnes qui reçoivent une telle aide une fois par semaine ou moins. enfin, les personnes qui font partie du bassin de desserte d’un cj offrant un tarif plus élevé voient leurs chances de fréquenter le cj diminuer de , fois ( / , ) pour chaque $ d’augmentation de tarif. lorsqu’on s’attarde à l’interaction entre le lieu de naissance et la cohabitation avec la personne de soutien (tableau ), on observe qu’une personne née au canada qui cohabite avec une personne de soutien a environ deux fois plus de chances de fréquenter le cj qu’une personne née au canada qui ne cohabite pas avec une personne de soutien. par ailleurs, les personnes nées à l’extérieur du pays ont aussi environ fois plus de chances de participer au cj que cette dernière, peu importe qu’elles cohabitent ou pas avec une personne de soutien. insérer le tableau près d’ici pour interpréter les résultats touchant l’âge, le sexe, le nombre de problèmes de santé, la présence d’un avc et les capacités fonctionnelles ainsi que leurs interactions, le tableau présente les ratios de cotes pour divers groupes de sujets, comparés au groupe le moins susceptible de fréquenter le cj, soit celui des hommes plus jeunes qui présentent plusieurs problèmes de santé tout en demeurant très autonomes. ces résultats indiquent que, si de façon générale les personnes plus âgées sont proportionnellement moins nombreuses à fréquenter le cj, lorsqu’elles présentent un nombre plus élevé de problèmes de santé, c’est l’inverse qui s’observe. par exemple, une personne de ans, sans aucun des problèmes de santé étudiés, a , fois plus de chances de fréquenter le cj qu’une personne de ans dans la même situation, alors qu’à problèmes de santé, la personne de ans, a , fois plus de chance de fréquenter le cj que celle de ans. de plus, pour un même groupe d’âge, les hommes sont moins nombreux à participer au cj s’ils ont davantage de problèmes de santé. par exemple, un homme de ans sans aucun des problèmes de santé étudiés, a , fois plus de chances de fréquenter le cj qu’un homme de ans qui présente problèmes de santé. on observe l’inverse pour les femmes de ans et plus. ainsi, une femme de ans sans aucun des problèmes de santé étudiés, a , fois moins de chances de fréquenter le cj qu’une femme de ans qui présente problèmes de santé. les hommes sont plus nombreux à fréquenter le cj lorsqu’ils présentent davantage d’incapacités fonctionnelles. ainsi, pour tous les groupes d’âge et tous les niveaux de problèmes de santé, un homme qui obtient seulement à l’échelle de capacités fonctionnelles oars a , fois plus de chances de fréquenter le cj que celui qui est complètement autonome ( à l’oars). toutes choses étant égales par ailleurs, les hommes qui ont fait un avc ont , fois plus de chances de fréquenter le cj que ceux qui n’ont jamais eu d’avc. cependant, ces deux relations ne s’observent pas chez les femmes. ces dernières tendent plutôt à utiliser davantage le cj lorsqu’elles sont plus autonomes et n’ont pas fait d’avc, mais ces différences sont peu importantes. insérer le tableau près d’ici dans le tableau , on note aussi que le groupe le moins susceptible de fréquenter le cj est celui des hommes plus jeunes qui n’ont pas fait d’avc mais présentent plusieurs problèmes de santé tout en demeurant très autonomes. le groupe le plus susceptible de le fréquenter est celui des hommes les plus jeunes, qui présentent un faible nombre de problèmes de santé, mais qui ont fait un avc et présentent plusieurs incapacités fonctionnelles. tous les groupes de femmes se situent entre ces deux extrêmes. les femmes les plus susceptibles d’y participer sont les plus jeunes qui ont peu de problèmes de santé, suivies de celles (plus jeunes ou plus vieilles) qui ont plusieurs problèmes de santé, alors que les femmes les moins susceptibles d’y participer sont les plus âgées, qui ont peu de problèmes de santé. discussion le premier objectif de cette étude était d’identifier la proportion d’utilisateurs de cj parmi une cohorte de personne âgée vulnérable de la région de montréal qui participaient à une étude plus large sur les services intégrés aux personnes âgées. une proportion de , % de l’échantillon a utilisé le cj pendant la période d’observation. selon les coordonnateurs de cj rencontrés pour discuter des résultats, il est réaliste de croire que ce résultat reflète la proportion d’usagers des clsc du territoire concerné qui participe à un moment donné aux activités des cj. il peut être difficile de généraliser ce résultat, étant donné le caractère multiethnique du territoire sur lequel le projet s’est déroulé. toutefois, dans l’hypothèse où l’utilisation de ce service serait limitée par sa disponibilité, alors il serait possible de penser qu’on obtiendrait un résultat similaire pour l’ensemble des territoires de clsc de la région de montréal, puisque la disponibilité, l’organisation et les objectifs des clsc et des cj sont similaires pour toute la région. la situation est différente dans les cj des régions rurales de la province puisque ceux-ci doivent souvent adapter leur programmation en fonction de possibilités de transport sur un vaste territoire. le second objectif de cette étude était de déterminer les caractéristiques qui distinguent les utilisateurs de cj des non-utilisateurs, parmi une clientèle en perte d’autonomie. les résultats permettent d’identifier plusieurs de ces caractéristiques. ainsi, à l’instar de dabelko et balaswamy ( ), on note que les utilisateurs de cj sont plus jeunes que l’ensemble des sujets de notre étude. une partie de l’explication peut résider dans le fait que les cj rejoignent peu la clientèle très âgée. en effet, sur les sujets de ans ou plus que comptaient cette étude, seuls étaient des participants de cj, et ils étaient âgés respectivement de et ans. aucun des centenaires ne fréquentait le cj. les responsables de cj rencontrés ont observé que les personnes très âgées se sentent particulièrement fragiles et tolèrent moins bien le transport et les activités en groupe. elles préfèrent donc recevoir des services à la maison. tout comme dans l’étude de chappell ( ), les personnes plus instruites de cet échantillon utilisent moins le cj. toutefois, dans la présente recherche, des différences sont observées seulement lorsqu’on isole ceux et celles qui ont une éducation universitaire. par ailleurs, selon coulton et frost ( ), les personnes plus instruites utiliseraient davantage les services récréatifs. ainsi, les diplômés universitaires ont peut-être davantage accès à des ressources personnelles comme la physiothérapie en privé, ou communautaires comme des groupes de loisirs et des centres d’exercices et donc ressentent moins le besoin de fréquenter le cj. ou encore, du fait qu’ils sont peu nombreux dans le groupe des ans et plus, ils se sentent moins à l’aise au cj. peut-être également que le type d’activités offertes en cj, conçues pour plaire à la majorité de la clientèle ne leur convient pas. selon les coordonnateurs de cj rencontrés, il est aussi possible que les professionnels à la retraite (p. ex. : avocats, médecins) ne soient pas à l’aise de participer à un groupe au coté d’anciens clients. cette observation mériterait d’être testée dans des recherches ultérieures. cette étude démontre aussi que lorsque les services sont accessibles dans les quartiers multiethniques, les personnes immigrantes les utilisent autant que les personnes nées au canada. chappell ( ), qui avait obtenu un résultat contraire, avait remis en question l’accessibilité des services dans les secteurs plus multiethniques du manitoba. comme on pouvait s’y attendre, chez les personnes nées au canada, la cohabitation avec une personne de soutien augmente les chances d’utiliser le cj. le besoin de répit de la personne de soutien, de même que la stimulation que cette dernière peut fournir à la personne âgée pour lui faire voir les bienfaits que le cj peut lui apporter, peuvent expliquer ce résultat. un résultat plus surprenant est que chez les personnes qui sont nées à l’extérieur du canada, cette relation n’est pas observée. pourquoi ces personnes fréquentent-elles autant le cj lorsqu’elles ne cohabitent pas avec une personne de soutien que lorsqu’elles cohabitent ? peut-être que les personnes originaires du canada qui vivent seules le font par choix ou par souci d’indépendance, alors que les personnes d’une autre appartenance culturelle qui vivent seules le font par obligation, parce qu’elles sont isolées de leur famille et donc, recherchent davantage la participation à un groupe. peut-être aussi que les intervenants qui dirigent les personnes âgées vers les services ajoutent le déracinement à la liste des critères qu’ils considèrent et les dirigent davantage vers les cj. peut-être aussi que des personnes nées dans des pays offrant peu de services publics se sentent-elles privilégiées de l’offre de services disponibles ici et acceptent-elles plus rapidement les services qui leur sont proposés par les intervenants. ce ne sont là que quelques hypothèses qui peuvent expliquer ce résultat. des études qualitatives permettraient de fournir des réponses plus pertinentes à cette question. alors que les études antérieures n’avaient pas démontré de lien clair entre le sexe et l’utilisation du cj, cette étude démontre que si les hommes et les femmes utilisent le cj dans des proportions semblables, ils ne l’utilisent pas de la même façon. c’est lorsqu’ils ont subi un avc et lorsqu’ils présentent plusieurs incapacités fonctionnelles que les hommes utilisent davantage le cj. pour les femmes, l’utilisation ne varie pas en fonction de ces variables. on peut penser que les hommes utilisent davantage le cj pour y faire des exercices dans le but de maintenir ou d’améliorer leurs capacités fonctionnelles, ou encore comme un répit pour leur personne de soutien. les femmes utilisent le cj pour ces mêmes raisons ou encore pour briser l’isolement, puisqu’elles sont plus nombreuses à vivre seules. cependant, ces résultats sont observés même lorsque la cohabitation avec une personne de soutien est contrôlée. ainsi, il faut peut-être regarder de plus près le type de lien avec la personne de soutien. on remarque alors que pour les % d’hommes qui cohabitent avec une personne de soutien, la conjointe est la personne de soutien dans % des cas. pour les % des femmes qui cohabitent avec une personne de soutien, le conjoint est présent dans % des situations, alors que dans % des cas, il s’agit d’un autre proche. on peut penser que lorsque l’homme présente peu d’incapacités, son épouse lui apporte facilement le soutien dont il a besoin. habituée à partager le quotidien de son conjoint, elle ne sent peut- être pas de besoin de répit lorsque que celui-ci peut être laissé sans surveillance et que les soins à lui apporter ne l’empêchent pas d'accomplir ses autres tâches. par contre, lorsque les incapacités sont élevées, le répit s’imposera pour permettre le maintien à domicile du conjoint. À l’inverse, on peut imaginer la situation de la femme veuve qui emménage avec une tierce personne parce qu’elle ne peut plus vivre seule malgré un niveau d’incapacités peu élevé. le simple fait de devoir s’habituer à vivre avec cette personne âgée quotidiennement peut demander un effort d’adaptation qui créera un fardeau et un besoin de répit pour la personne de soutien. ou encore, si cette tierce personne occupe un emploi, la personne âgée peut se sentir isolée même lorsqu’elle cohabite avec sa personne de soutien et ressentir le besoin du cj pour briser cet isolement. encore ici, ce ne sont que quelques hypothèses qui pourraient être vérifiées dans des études qualitatives. contrairement à celle de dabelko et balaswamy ( ), cette étude n’a pas démontré de différence significative dans le nombre de jours d’hospitalisation des participants au cj. par contre, les utilisateurs de cj sont légèrement moins autonomes que les non-utilisateurs. de plus, comme on pouvait s’y attendre, les personnes qui présentent des incapacités très importantes ( à à l’oars) ne fréquentent pas le cj. ces incapacités très importantes rendent probablement impossibles les déplacements hors du domicile. pour les mêmes raisons, on aurait pu penser que les personnes ayant des incapacités importantes ( à et à à l’oars) seraient aussi moins représentées chez les utilisateurs de cj. ce n’est pas le cas. hormis les personnes ayant un résultat de à à l’oars, les seuls groupes qui ont des taux de participation inférieurs à la moyenne sont les groupes les plus autonomes ( et plus à l’oars). ainsi, les cj remplissent leur mission de desservir les personnes en perte d’autonomie. contrairement à d’autres études (baumgarten et coll., ; dabelko et balaswamy, ; montgomery et coll., - ), celle-ci n’a pas révélé de relation entre la présence de troubles cognitifs et l’utilisation du cj. bien que les cj reçoivent une grande proportion de personnes avec des troubles cognitifs afin d’offrir du répit à leur personne de soutien, il est possible de penser qu’un nombre aussi important est desservi à domicile par d’autres ressources, étant donné qu’il n’est pas toujours facile de faire accepter la participation au cj à cette clientèle. de plus, lorsque la personne manifeste des troubles de comportement qui nuisent au fonctionnement du groupe, elle sera exclue du cj. par ailleurs, il est possible que le nombre de personnes atteintes de troubles cognitifs ait été sous évalué dans la présente étude. en effet, il se peut que le spmsq n’identifie pas bien toutes les formes de troubles cognitifs. par exemple, contrairement au mini examen de l’état mental (folstein, folstein et mchugh, ), il n’y a aucune question sur les praxies ou la planification motrice dans le spmsq. en ce qui concerne la présence de symptômes de dépression, les résultats de cette étude sont cohérents avec ceux de baumgarten et coll. ( ). les utilisateurs de cj présentent des scores de dépression légèrement supérieurs à ceux des non-utilisateurs. toutefois, en raison d’un nombre important de réponses manquantes (questionnaires remplis par des substituts), l’importance de cette variable n’a pu être étudiée dans les analyses de régression. la présence de troubles émotionnels, qui peut inclure en plus de la dépression, de l’anxiété et des troubles du sommeil, peut influencer l’utilisation du cj de façon différente selon le problème en question. cette variable trop générale n’a pas permis de distinguer les utilisateurs des non-utilisateurs. deux facteurs organisationnels ont démontré une association avec l’utilisation du cj. premièrement, on remarque que la probabilité de fréquenter le cj diminue dans les bassins des cj qui facturent un montant plus élevé aux participants. cette influence peut sembler peu importante puisque les chances de fréquenter le cj diminuent de , fois pour chaque $ d’augmentation de tarif. cependant, lorsqu’on considère qu’un des cj de cette étude facture $ par présence à ses participants et que ceci est nettement au-dessus des coûts demandés par les autres cj de l’étude ( $ à , $), on réalise que pour ce centre, la probabilité de fréquenter le cj diminue de % par rapport à un centre qui facture le coût médian de $ . deuxièmement, on observe qu’à capacités fonctionnelles égales, une aide plus fréquente du clsc pour les activités quotidiennes et domestiques est associée à une plus grande probabilité de fréquenter le cj. ceci peut s’expliquer de plusieurs façons. ce peut être relié à la propension à accepter l’aide des services formels, tant de la part du clsc que du cj. ce peut être une indication que la personne qui est plus encadrée par le clsc sera plus stimulée par le personnel du clsc à participer aux activités du cj. À l’inverse, ce peut être la participation au cj qui induit une plus grande aide de la part du clsc. en effet, les intervenants des cj peuvent s’apercevoir que la condition d’un client se détériore et faire plus rapidement une demande d’aide supplémentaire au clsc. la personne elle- même pourrait attendre plus longtemps avant de faire une telle demande, malgré une détérioration de ses capacités. de plus, afin d’offrir un meilleur répit à leur personne de soutien, plusieurs participants sont préparés (aide à l’hygiène et à l’habillement) par le personnel du clsc lors de leurs journées de fréquentation du cj. cette réalité peut faire augmenter la fréquence de l’aide reçue par les participants des cj. enfin, contrairement à ce que nous aurions pu croire, le fait de recevoir les services intégrés expérimentés dans le cadre du projet sipa, plutôt que les services réguliers du clsc n’a pas influencé l’utilisation du cj. les services des cj sont probablement déjà bien connus par les intervenants réguliers des clsc qui y dirigent des clients régulièrement. les clients dirigés en cj par les gestionnaires de cas du projet sipa ou par les intervenants des services réguliers des clsc, devaient se plier aux mêmes règles de gestion de la liste d’attente, le cas échéant. car, si le budget additionnel des gestionnaires de cas sipa permettait l’ajout d’heures de services à domicile, il n’était pas possible de faire l’achat de jours additionnels en cj dans le contexte actuel de la gestion des cj concernés. forces et limitations de l’étude bien que largement répandus comme service de soutien à domicile, les cj ont été peu étudiés au canada. cette étude remédie en partie à cette lacune en décrivant les caractéristiques des utilisateurs de cj dans le contexte québécois. À notre connaissance, cette recherche sur les déterminants de l’utilisation du cj est l’une des premières à vérifier la présence d’interaction entre les diverses variables à l’étude, ce qui a permis avec un échantillon de taille moyenne, de faire ressortir des différences importantes dans l’utilisation du cj entre les hommes et les femmes. ces différences n’étaient pas ressorties dans les études précédentes. les éléments mis en lumière dans cette étude peuvent permettre de mieux cibler les interventions des cj pour les personnes les plus susceptibles d’en bénéficier. ainsi, en prenant connaissance de ces résultats, les intervenants qui dirigent les personnes âgées vers les cj pourront réaliser l’importance de discuter de cette possibilité avec les hommes qui ont fait un avc et qui présentent des incapacités importantes, clientèle qui répond positivement à l’offre de fréquentation du cj. les responsables de cj, quant à eux, pourront se questionner sur les raisons qui font que certaines clientèles sont moins représentées au cj, comme les personnes avec une éducation universitaire. est-ce réellement parce que leurs besoins sont moins grands ou est-ce parce que leur programmation d’activités n’est pas adaptée aux besoins de ces clientèles? cette étude comporte aussi certaines limites. en ce qui concerne sa validité externe, il faut noter qu’il s’agit d’une analyse secondaire de données recueillies pour une étude plus large sur les services intégrés aux personnes âgées. l’échantillon n’est donc pas un échantillon représentatif de l’ensemble de la population âgée qui présente des incapacités. la population à l’étude était déjà connue des services de maintien à domicile. combien y a- t-il de personnes âgées qui présentent des incapacités aussi importantes que celles de cet échantillon mais n’ont pas recours aux services des clsc ? ces personnes sont peut-être plus isolées et plus démunies en termes de ressources d’aide. certaines d’entre elles pourraient sans doute bénéficier des services offerts par les cj. toutefois, les façons de les rejoindre sont limitées. de plus, les caractéristiques des utilisateurs de cette étude ne reflètent pas les caractéristiques de l’ensemble des utilisateurs de cj pour personnes âgées, puisque certains cj admettent des personnes de moins de ans qui présentent un profil d’incapacités gériatriques. ces personnes n’étaient pas admissibles à la présente étude. il faut aussi noter aussi que la population du territoire sur lequel le projet s’est déroulé est plus multiethnique que celle de l’ensemble de l’île de montréal ( , à % d’immigrants contre % pour montréal) et, sur un des deux territoires de clsc, plus instruite (seulement % d’adultes n’ayant pas terminé des études secondaires contre à % pour l’autre territoire et l’ensemble de l’île de montréal) (adrlssss de montréal, ). ceci peut avoir influencé certains résultats, en particulier ceux qui concernent l’influence de l’éducation et du pays de naissance sur l’utilisation des cj. enfin, en réalisant une analyse secondaire de données déjà recueillies, il a été impossible de distinguer parmi les non-utilisateurs, les personnes qui ont déjà été dirigées au cj et qui ont choisi de ne pas y participer, de celles qui n’ont jamais été dirigées vers ce type de services. en ce qui concerne la validité interne de l’étude, il faut noter que différentes caractéristiques de la personne de soutien, comme le fardeau de cette personne (baumgarten et coll., ) ou l’influence de son réseau formel et informel (cotrell et engel, ) peuvent aussi influencer l’utilisation du cj par la personne âgée. ces caractéristiques n’ont pas été considérées dans la présente étude, étant donné le nombre de questionnaires aux personnes de soutien qui étaient manquants ou incomplets. la prise en compte de ces variables aurait entraîné une réduction importante de la taille de l’échantillon de l’étude. enfin, le fait que cette étude ne portait que sur cinq centres de jours a réduit la possibilité d’étudier l’influence des caractéristiques organisationnelles des cj et des interactions entre ces dernières et les caractéristiques sociales ou de santé, puisque les caractéristiques de ces cinq cj étaient fortement corrélées entre elles. conclusion nous croyons que les résultats obtenus peuvent être utiles aux gestionnaires de cj et aux planificateurs de services pour les personnes âgées. ces résultats indiquent d’abord que le coût des services crée une contrainte qui peut réduire l’accès au cj. ils montrent aussi que les hommes et les femmes n’utilisent pas le service de la même façon et ont probablement des attentes différentes envers ce type de service. ces résultats fournissent des pistes à explorer pour mieux comprendre ces différences afin d’éventuellement mieux adapter les services aux besoins distincts de ces clientèles. ils incitent aussi à approfondir les raisons qui font que les diplômés universitaires utilisent moins ce type de services. Étant donné que la proportion d’universitaires parmi la population âgée devrait augmenter dans les années à venir, il serait important de répondre à cette question pour s’assurer que les besoins de ce groupe seront pris en compte. enfin, pour mieux comprendre les déterminants de la participation au cj, il y aurait aussi lieu d’explorer les différences entre les groupes qui sont moins dirigés vers ces services et ceux qui, une fois dirigés vers un cj, refusent d’y participer ou cessent plus rapidement leur participation. les résultats présentés dans cette étude fournissent certaines pistes pour aborder ces questions dans des recherches ultérieures auprès des sources de référence des cj. notes le projet sipa consiste en l’expérimentation d’un modèle de services intégrés pour les personnes âgées qui présentent des incapacités. le modèle a été développé par un groupe de chercheurs l’université mcgill et de l’université de montréal (béland, bergman et lebel, ; béland, bergman, lebel, clarfield, et coll., ; béland, bergman, lebel, dallaire, et coll., ). ce modèle prévoit qu’une organisation unique exerce la responsabilité clinique des services peu importe l’endroit où ils sont prodigués. il a été implanté dans deux clsc de la région de montréal comme programme distinct des services à domicile régulier et a été offert à un nombre limité de clients à titre de projet de démonstration. les personnes du groupe expérimental ont été suivies par un gestionnaire de cas sipa, assisté d’une équipe multidisciplinaire. elles ont reçu de la part de l’équipe sipa des services de soutien à domicile similaires à ce qu’elles recevaient du clsc avant l’implantation du projet. de plus, le gestionnaire de cas avait la capacité de mobiliser rapidement des ressources additionnelles en cas de besoin (accès à des places réservées dans des résidences pour personnes âgées et à un budget pour permettre une augmentation temporaire des services à domicile), afin d’éviter une utilisation inappropriée des ressources hospitalières. en cas d’hospitalisation, il assurait un suivi auprès de l’équipe hospitalière. les personnes qui recevaient les services intégrés sipa avaient aussi accès à un service téléphonique heures par jour, jours par semaine, pour une réponse rapide à leur besoin. chaque gestionnaire de cas sipa n’avait pas plus de clients sous sa responsabilité afin d’assurer une réponse personnalisée à chacun. ce modèle de services intégrés a pu être expérimenté grâce à un financement de $ , millions du fonds d’adaptation des services de santé de santé canada et du ministère de la santé et des services sociaux du québec. jedi pour jonction et diffusion informatiques, le nom de la compagnie qui a créé ce logiciel. ce résultat provient de b = - , , e b = , / , = , figure : facteurs qui influencent l’utilisation du centre de jour utilisation du centre de jour facteurs de besoins • santé physique • santé psychologique • présence de troubles cognitifs • capacité fonctionnelle facteurs de capacité de nature organisationnelle caractéristiques organisationnelles des cj : • admissibilité au cj du territoire • liste d’attente au cj du territoire • coût du cj du territoire • structure de personnel du cj du territoire caractéristiques des services des clsc: • type de services : services intégrés ou services réguliers • aide du clsc pour avq facteurs prédisposants • variables socio-démographiques • réseau social de la pa figure : relation entre l’utilisation du centre de jour et les capacités fonctionnelles - - - - - - résultat au oars , , , , , , , m o y e n n e a v e c a u m o in s u n e p ré s e n c e p e n d a n t la p é ri o d e d 'o b s e rv a ti o n note : sur le graphique ci-dessus, chacune des catégories de résultats à l’oars représente environ % de l’échantillon, sauf la catégorie - qui ne comprend que , % des sujets de l’étude. p o u rc e n ta g e a v e c a u m o in s u n e p ré s e n c e a u c j tableau : facteurs prédisposants ou caractéristiques sociales des personnes âgées utilisateurs non-utilisateurs echantillon total moy. ou % n moy. ou % n test sig. moy. ou % n variables sociodémographiques Âge , (± , ) , (± , ) t , * , (± , ) sexe (proportion de femmes) , % , % t , , % État civil - célibataire (jamais marié) - marié ou conjoint de fait - veuf - séparé ou divorcé - religieux , % , % , % , % , % , % , % , % , % , % χ , , % , % , % , % , % Éducation - aucune - primaire non complétée - primaire complétée - secondaire - école techn. ou de métiers - universitaire proportion avec éducation universitaire , % , % , % , % , % , % , % , % , % , % , % , % , % , % χ t , , * , % , % , % , % , % , % profession antérieure associée à la santé , % , % t , , % pays de naissance - canada - autre , % , % , % , % t , * , % , % religion - catholique - juive - autre (incluant aucune) , % , % , % , % , % , % χ , , % , % , % langue - français à la maison et avec professionnels - anglais à la maison et avec professionnels - anglais ou français avec les professionnels (pas à la maison) - autre langue à la maison, langue avec les professionnels est manquante - autre langue (ni anglais ni français) même avec les professionnels , % , % , % , % , % , % , % , % , % , % χ , , % , % , % , % , % proportion qui estime que leur revenu répond difficilement à leurs besoins , % , % t , * , % réseau social lien pa-ps - aucune ps - conjoint(e) - autre co-résident (enfant) - autre, non co-résident (enfant) , % , % , % ( , %) , % ( , %) , % , % , % ( , %) , % ( , %) χ , , % , % , % ( , %) , % ( , %) ces personnes utilisent le français ou l’anglais à la maison parfois en plus d’une autre langue tableau : facteurs de besoin ou état de santé des personnes âgées utilisateurs non-utilisateurs echantillon total moy. ou % n moy. ou % n test sig. moy. ou % n santé physique nombre de problèmes de santé / (incluant avc, prob. émotionnels et prob. de mémoire) , (± , ) , (± , ) t , , (± , ) nombre de problèmes de santé / (excluant avc, prob. émotionnels et prob. de mémoire) , (± , ) , (± , ) t , , (± , ) type de problèmes de santé physique : déjà eu cataractes mal jointures ou os (rhumatismes) problèmes de vessie, reins ou prostate problèmes de circulation maladie de cœur haute tension accident vasculaire cérébral (avc) problèmes respiratoires déjà eu problèmes d’estomac diabète déjà eu tumeur ou cancer fracture hanche ou fémur dans l’année déjà eu glaucome maladie de parkinson , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % , % t t t t t t t t t t t t t t , , , , , , , * , , , , , , , , % , % , % , % , % , % , % , % , % , % , % , % , % , % nombre de jours d'hospitalisation dans la période d'observation , (± , ) , (± , ) t , , (± , ) santé psychologique présence de problèmes émotionnels , % , % t , , % résultat à l’edg / présence probable de dépression , (± , ) , % , (± , ) , % t t , , * , (± , ) , % troubles cognitifs présence de troubles cognitifs selon spmsq et questionnaires remplis par substituts , % , % t , , % capacités fonctionnelles avq + avd selon l’oars (résultat / ) avq (résultat / ) avd (résultat / ) présence d’incontinence urinaire présence d’incontinence fécale , (± , ) , (± , ) , (± , ) , % , % , (± , ) , (± , ) , (± , ) , % , % t t t t t , * , * , * , , , (± , ) , (± , ) , (± , ) , % , % problèmes sensoriels : aucun problème sensoriel au moins un prob. avec un peu de difficulté au moins un prob. avec beaucoup de difficulté , % , % , % , % , % , % χ , , % , % , % difficulté de communication : aucune un peu de difficulté beaucoup de difficulté , % , % , % , % , % , % χ , , % , % , % hébergé dans les mois suivants le questionnaire , % , % t , , % tableau : facteurs de capacité de nature organisationnelle utilisateurs non-utilisateurs echantillon total moy. ou % n moy. ou % n test sig. moy. ou % n services reçus du clsc fréquence approx. de l’aide du clsc : : aucune intervention recensée : moins d’une fois / sem. : fois / sem. : à fois / sem. : ou fois / sem. , % , % , % , % , % , % , % , % , % , % χ , * , % , % , % , % , % services intégrés (sipa) services réguliers , % , % , % , % t , , % , % caractéristiques des cj critères d’exclusion : proportion qui fait partie du bassin d’un cj qui n’accepte pas les personnes : qui doivent être transférées à pers. avec incontinence fécale qui ont besoin d’aide pour s’alimenter % % % % % % t t t , * , , , % , % , % liste attente du cj en mois , (± , ) , (± , ) t , , (± , ) coût du cj , $ (± , ) , $ (± , ) t , , $ (± , ) fait partie du bassin d’un cj qui : n’appelle pas les participants appelle les cas particuliers appelle tous les participants , % , % , % , % , % , % χ , * , % , % , % ratio personnes âgées inscrites par jour/etc ratio personnes âgées présentes par jour/etc , (± , ) , (± , ) , (± , ) , (± , ) t t , , , (± , ) , (± , ) % de personnel de soins % de personnel de réadaptation % d’intervenants en loisirs % d’intervenants psychosociaux % de personnel administratif et de soutien , % (± , ) , %(± , ) , % (± , ) , % (± , ) , % (± , ) , % (± , ) , %(± , ) , % (± , ) , % (± , ) , % (± , ) t t t t t , , * , , , , % (± , ) , %(± , ) , % (± , ) , % (± , ) , % (± , ) tableau : régression logistique coefficient b ratio de cote ajusté ic , % pour le ratio de cote ajusté signif. facteurs prédisposants (caractéristiques sociales) Âge - , , ( , - , ) , * sexe masculin féminin - , , , ( , - , ) , * Éducation primaire, secondaire ou collégial universitaire - , , , ( , - , ) , * pays de naissance canada autre , , , ( , - , ) , * lien avec ps pas de ps ou ps non co-résidant ps corésidante , , , ( , - , ) , * facteurs de besoin (État de santé) nombre de problèmes de santé - , , ( , - , ) , * présence d’un avc non oui , , ( , - , ) , * capacités fonctionnelles (oars / ) - , , ( , - , ) , * interactions - caractéristiques sociales et état de santé interaction âge et problèmes de santé , , ( , - , ) , * interaction sexe et problèmes de santé , , ( , - , ) , * interaction sexe et avc - , , ( , - , ) , * interaction sexe et capacités fonct. , , ( , - , ) , * interaction entre lien et pays - , , ( , - , ) , * facteurs de capacité de nature organisationnelle fréq. de l’aide du clsc pour avq/avd aucune ou une fois /sem ou moins à fois / sem à fois/ sem , , , , , ( , - , ) ( , - , ) , * , * coût du cj du territoire - , , ( , - , ) , * tableau : ratios de cote ajustés pour pays de naissance et lien avec la personne de soutien, les divers groupes étant comparés aux personnes nées au canada et ne cohabitant pas avec une personne de soutien lien avec ps pays ne co-habite pas co-habite canada , , autre , , tableau : ratios de cote ajustés selon l’âge, le sexe, le nombre de problèmes de santé physique, la présence d’avc et les capacités fonctionnelles, les divers groupes étant comparés aux hommes sans avc, avec autres problèmes de santé et entièrement autonomes hommes capacités fonctionnelles (oars) femmes capacités fonctionnelles (oars) ans ans sans avc, aucun autre problème de santé , , , , sans avc, aucun autre problème de santé , , , , sans avc, autres problèmes de santé , , , , sans avc, autres problèmes de santé , , , , avec avc, aucun autre problème de santé , , , , avec avc, aucun autre problème de santé , , , , avec avc, autres problèmes de santé , , , , avec avc, autres problèmes de santé , , , , ans ans sans avc, aucun autre problème de santé , , , , sans avc, aucun autre problème de santé , , , , sans avc, et autres problèmes de santé , , , , sans avc, autres problèmes de santé , , , , avec avc, aucun autre problème de santé , , , , avec avc, aucun autre problème de santé , , , , avec avc, autres problèmes de santé , , , , avec avc, autres problèmes de santé , , , , ans ans sans avc, aucun autre problème de santé , , , , sans avc, aucun autre problème de santé , , , , sans avc, autres problèmes de santé , , , , sans avc, autres problèmes de santé , , , , avec avc, aucun autre problème de santé , , , , avec avc, aucun autre problème de santé , , , , avec avc, autres problèmes de santé , , , , avec avc, autres problèmes de santé , , , , références adrlsss de montréal. 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( b). les centres de soins de jour pour adultes en colombie-britannique : modèles, caractéristiques et services. rapports sur la santé, ( ), - . hébert, r., carrier, r., & bilodeau, a. ( ). le système de mesure de l’autonomie fonctionnelle (smaf). la revue de gériatrie, ( ), – . hosmer, d. w., & lemeshow, s. ( ). applied logistic regression ( nd ed.). new-york: john wiley and sons, inc. lawton, m. p., brody, e. m., & saperstein, a. r. ( ). a controlled study of respite services for caregivers of alzheimer's patients. the gerontologist, ( ), - . lawton, m. p., brody, e. m., & saperstein, a. r. ( ). respite for caregivers of alzheimer's patients: research and practice. new-york: springer publishing company. montgomery, r. j. v., & borgotta, e. f. ( ). the effects of alternative support strategies on family caregiving. the gerontologist, ( ), - . montgomery, r. j. v., kosloski, k., & borgotta, e. f. 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Évaluation du programme québécois des centres de jour. québec : centre hospitalier de l'université laval: unité de recherche en santé communautaire, centre de santé publique de québec. wallace, j. ( ). factors affecting attendance in adult day care centers. journal of gerontological social work, ( / ), - . weissert, w. g., elston, j. m., bolda, e. j., cready, c. m., zelman, w. n., sloane, p. d., et al. ( ). models of adult day care: findings from a national survey. the gerontologist, ( ), - . wimo, a., mattsson, b., adolfsson, r., eriksson, t., & nelvig, a. ( ). dementia day care and its effects on symptoms and institutionalization: a controlled swedish study. scandinavian journal of primary health care, , - . yesavage, j. a., brink, t. l., rose, t. l., lum, o., huang, v., adey, m., & leirer, v. o. ( ). development and validation of a geriatric depression screening scale: a premiminary report. journal of psychiatric research, ( ), - . zarit, s. h., stephens, m. a. p., townsend, a., greene, r., & leitsch, s. a. ( ). patterns of adult day service use by family caregivers: a comparison of brief versus sustained use. family relations: interdisciplinary journal of applied family studies, ( ), - . article les activités de groupe des centres de jour pour personnes âgées correspondent-elles aux besoins des différents profils de participants? jacinthe savard , paule lebel , nicole leduc , françois béland , howard bergman , , groupe de recherche solidage, faculté de médecine, université de montréal et université mcgill clinique universitaire interprofessionnelle de réadaptation, université d'ottawa centre d’expertise sur la santé des personnes âgées et des aidants (cespa), institut universitaire de gériatrie de montréal groupe de recherche interdisciplinaire en santé (gris), faculté de médecine, université de montréal division of geriatric medicine, université mcgill et jewish general hospital, montréal soumis à la revue canadienne du vieillissement : / / , accepté pour publication : / / sous-presse : canadian journal on aging / la revue canadienne du vieillissement, ( ) resume cette étude exploratoire cherche à vérifier l’adéquation entre les activités offertes par les centres de jour et les caractéristiques d’autonomie et de santé des utilisateurs, pour participants de centres de jour de montréal. des analyses en regroupement ont permis de distinguer quatre profils de participants. une classification des activités en centre de jour a été établie à l’aide d’un groupe d’experts. la participation à ces activités a été étudiée pour chaque profil et comparée aux activités recommandées par notre groupe d’experts ainsi que dans les écrits. les résultats démontrent une concordance partielle entre les activités offertes et les besoins des participants. cette concordance apparaît plus grande pour les personnes qui présentent des problèmes de santé physique ou des incapacités d’origine motrice et plus faible pour celles qui présentent des symptômes dépressifs ou des atteintes cognitives. ces résultats suggèrent la nécessité de revoir la planification des activités pour assurer une offre de services qui tienne davantage compte des besoins des participants, et ainsi, optimiser les bénéfices de la participation à un centre de jour. abstract this study was carried out to explore the fit between health and functional characteristics of day program participants and the types of program activities they were offered in day programs. the subjects were participants from day programs in montreal. four different participant profile groups were identified using cluster analysis. a classification of program activities was created by a panel of experts. participation in these activities was studied for each profile group, and compared to recommended activities for such client groups outlined through examination of the literature and consultation with our panel of experts. results showed only partial correspondence between program activities and participants’ needs. this correspondence seemed higher for individuals with physical health problems or mobility impairments and weaker for those presenting depressive symptoms or cognitive impairments. these results suggest a need to review activity program components and determine ways to better match these with client needs to optimise the benefits of day program participation. mots-clés : centre de jour, personnes âgées, soutien à domicile, activités thérapeutiques keywords : adult day care, adult day services, frail seniors, community long-term care, therapeutic activities remerciements pour mener à bien cette étude, la première auteure a reçu une bourse de recherche doctorale de la société alzheimer du canada et une du groupe de recherche solidage (financé par les irsc). cette étude utilise des données du projet sipa, financé par le fonds d’adaptation des services de santé de santé canada, la fondation canadienne de recherche sur les services de santé et le ministère de la santé et des services sociaux du québec. les auteurs remercient luc dallaire et john fletcher, coordonnateurs de recherche du projet sipa, pour leur aide précieuse relative à la gestion et à la transmission des données. de plus, ils remercient anne-marie boivin, christian-paul gaudet, mélanie léonard, manon pouliot et tina tenenbaum, coordonnateurs des centres de jour à l’étude pour avoir partagé des informations sur le fonctionnement de leur centre de jour, ainsi que jacinthe auger, lucie bernier, françoise hébert, jacinthe labbé, thérèse lafontaine, odette descarries et tina tenenbaum qui ont participé au groupe d’experts sur les activités en centres de jour. introduction parmi l’ensemble des services gérontologiques et gériatriques mis en place pour répondre aux besoins de la population vieillissante, on retrouve le centre de jour (cj), un service offert aux personnes âgées qui présentent des incapacités et qui demeurent à domicile. les interventions en cj incluent des activités de surveillance de l’état de santé, des activités d’enseignement et de prévention, des activités de réadaptation visant essentiellement le maintien des capacités, des interventions psychosociales et de loisirs, ainsi que du répit et du soutien aux familles (gutman, milstein, killam, lewis et hollander, b; regroupement des centres d'hébergement et de soins de longue durée de la région de montréal, ). elles sont offertes principalement sous forme d’activités de groupe, bien que certaines interventions individuelles sont aussi réalisées. les interventions du centre de jour sont une composante importante des services de soutien à domicile, qui contribuent à améliorer le bien-être psychologique et la qualité de vie des personnes âgées, ainsi qu’à diminuer le stress et le sentiment de fardeau de leur personne de soutien (baumgarten, lebel, laprise, leclerc et quinn, ; schacke et zank, ; strain, chappell et blandford, ; zank et schacke, ; zarit, stephens, townsend et greene, ). de plus, lorsque le maintien à domicile n’est plus possible, l’utilisation du centre de jour préalable au placement en institution aurait un effet protecteur sur le déclin cognitif de personnes atteintes de démence lors du placement (wilson, mccann, li, aggarwal, gilley et evans, ). plusieurs études ont décrit les caractéristiques des utilisateurs de cj (cefalu, ettinger et espeland, ; cohen-mansfield, lipson, brenneman et pawlson, ; gutman, milstein, killam, lewis et hollander, a), ainsi que les types d’activités offertes dans divers modèles de cj (conrad et guttman, ; conrad, hughes, hanrahan et wang, ; gutman et coll., b; jarrott, zarit, berg et johansson, ). par exemple, aux États-unis, conrad et guttman ( ) ont comparé les centres qui reçoivent % ou plus de clients atteints de démence à ceux qui en reçoivent moins de %. ils ont observé que les centres qui en accueillent plus de % offrent en général moins de services cliniques comme les soins dentaires et les examens auditifs, et plus de services tels l’assistance aux soins personnels et aux finances; le répit et le soutien aux familles; les activités récréatives thérapeutiques (thérapie par l’art, musicothérapie); les activités de divertissement comme les fêtes, les sorties, les groupes sociaux; les activités de loisirs ou passe-temps comme les jeux et l’artisanat. jarrott et collaborateurs ( ) ont pour leur part comparé les activités offertes dans les centres de jour suédois et américains qui offrent des services à la clientèle atteinte de démence. ils ont trouvé que la clientèle des cj est similaire dans les deux pays, mais que les centres américains offrent une plus grande variété de services, comme les services de podiatrie et les groupes de soutien aux aidants qui ne sont pas offerts dans les centres suédois. toutefois, ces études n’ont pas cherché à savoir si les activités offertes à chacun des participants variaient en fonction des caractéristiques individuelles des clients. des guides publiés aux États-unis (goldston, ; lindeman, corby, downing et sanborn, ; national institute on adult day care, ; nissenboim et vroman, ) décrivent comment mettre en place un cj. sauf les guides destinés spécifiquement aux cj pour la clientèle atteinte de démence (lindeman et coll., ; nissenboim et vroman, ), ces guides présentent les types d’activités à offrir, sans préciser la clientèle visée spécifiquement par chaque type d’activités. au canada, le seul guide recensé, le cadre de référence pour les centres de jour proposé par l’association des centres d’accueil du québec (acaq, ) regroupe la clientèle des cj en six sous-programmes : • incapacités fonctionnelles d’origine motrice; • incapacités fonctionnelles d’origine sensorielle; • incapacités fonctionnelles d’origine cognitive; • facteurs socio-environnementaux; • santé physique; • santé mentale. pour chacun des sous-programmes, ce cadre de référence propose une liste d’activités de groupe et d’activités individuelles qui peuvent être offertes par les cj. ces derniers peuvent adapter ces suggestions en fonction des besoins particuliers de leur clientèle et des ressources dont ils disposent. aucune étude n’a été effectuée pour vérifier dans quelle mesure ces activités sont réellement offertes dans les cj. ce cadre de référence n’a pas non plus été mis à jour depuis . l’objectif général de la présente étude est d’évaluer l’adéquation entre les activités offertes par les cj et les caractéristiques de santé et d’autonomie des utilisateurs. elle comporte trois objectifs spécifiques : ) identifier, à l’aide d’analyses en regroupement, les profils de participants des cj; ) Étudier et catégoriser les activités qui leur sont offertes; ) comparer les activités offertes aux membres de chacun des profils préalablement identifiés à celles suggérées par le cadre de référence de l’acaq ( ) et aux recommandations d’un groupe d’experts. il s’agit d’une étude exploratoire qui cherche à combler une lacune dans les études actuelles. en effet, bien que les cj offrent majoritairement des activités de groupe, il arrive qu’ils offrent des programmations différentes pour les divers jours de la semaine ou encore, dans les centres suffisamment importants, deux ou trois activités simultanées pour divers groupes de clients, permettant de personnaliser l’offre de services. une combinaison d’activités mieux adaptées aux besoins de chaque participant pourrait avoir une influence sur la capacité du cj d’atteindre ses objectifs. méthode l’étude s’appuie principalement sur une analyse secondaire de données recueillies de juin à mars dans le cadre du projet de démonstration sipa, qui consistait en l’expérimentation d’un modèle de services intégrés pour les personnes âgées qui présentent des incapacités (béland et coll., a; b). le projet sipa a été mené auprès de personnes âgées qui résidaient sur deux territoires de clsc de la région de montréal. environ la moitié de ces personnes ont reçu les services intégrés évalués dans le cadre du projet sipa, alors que l’autre moitié continuait de recevoir les services de soutien à domicile réguliers de leur clsc. population à l’étude les personnes admises au projet sipa devaient être âgées de ans ou plus, vivre à domicile au début de l’étude, accepter de participer à une étude randomisée sur les services intégrés pour personnes âgées et pouvoir s’exprimer en français ou en anglais avec les membres du projet sipa, ou avoir un proche en mesure de le faire. elles devaient aussi présenter des incapacités fonctionnelles, indiquées par un résultat de – ou moins au système de mesure de l’autonomie fonctionnelle - smaf (hébert, carrier et bilodeau, ; desrosiers, bravo, hébert et dubuc, ). parmi les personnes toujours à domicile et suivies par l’équipe de recherche sipa à la fin de la première phase du projet en mai , avaient participé aux activités d’un centre de jour pendant la période d’observation. huit de ces participants ont dû être exclus des analyses en raison d’un trop grand nombre de données manquantes. l’échantillon final comprend donc personnes âgées. la seule différence statistiquement significative entre les caractéristiques démographiques et de santé des sujets inclus et exclus concerne le lien avec la personne de soutien : pour les sujets exclus, la personne de soutien n’est jamais le conjoint, alors qu’elle l’est pour % des sujets inclus. caractéristiques des centres de jour les caractéristiques des cinq cj qui offrent des services sur le territoire des deux clsc de l’étude ont été décrites plus en détail dans un article précédent (savard, leduc, lebel, béland et bergman, ) et sont résumées ci-après. le nombre de personnes âgées inscrites varie de à personnes par jour, selon les centres. le nombre moyen de présences réelles par jour varie de , à , . chaque personne peut être inscrite de ½ à journées par semaine, selon ses besoins et les politiques de chacun des centres. exceptionnellement, une personne a pu être inscrite à raison de journées par semaine. la durée de chaque visite varie de , à heures par jour, pour les personnes inscrites pour la journée; et de à , heures pour celles inscrites à la demi- journée, dans les centres qui offrent ce type de fréquentation. le coût de chaque participation varie de à $ par jour, pour couvrir les frais de transport et de repas. ces cj peuvent compter sur un personnel variant de , à , équivalents à temps complet (etc), qui inclut, en plus du personnel administratif et de soutien (coordonnateur, secrétaire, chauffeur), des membres des professions suivantes : infirmières ( centres), ergothérapeutes ( centres), physiothérapeutes ou thérapeutes en réadaptation physique ( centres), intervenants en loisirs ( centres) ou éducateurs spécialisés ( centres), intervenants psychosociaux ( centres), préposés aux bénéficiaires ( centres). bien que chacun des centres décrive ses critères d’admission de façon légèrement différente, ce sont tous des centres qui visent le soutien à domicile des personnes âgées qui présentent des incapacités. deux centres acceptent les personnes de ans et plus, deux autres à partir de ans, alors qu’un autre exige un profil gériatrique sans mentionner un âge minimum. aucun des centres à l’étude ne se définit comme un centre pour personnes atteintes de démence. toutefois, quatre des cinq centres regroupaient les personnes atteintes des troubles cognitifs lors de certaines journées particulières. le cinquième formait, cinq jours par semaine, un groupe spécifique pour les personnes qui ont des atteintes cognitives importantes. lors de ces journées ou dans ce groupe, on pouvait mener les mêmes types d’activités que lors des groupes réguliers, mais en les adaptant aux capacités cognitives de la clientèle. collecte de données les caractéristiques des participants ont été recueillies par l’équipe de recherche sipa à l’aide de questionnaires complétés par entrevue. pour les personnes âgées incapables de répondre elles-mêmes au questionnaire, un substitut a été utilisé. l’équipe de recherche sipa a aussi réalisé un relevé de l’utilisation des services de santé des participants à partir des bases de données des organismes et des établissements de santé (ramq, agence de la santé et des services sociaux, hôpitaux, clsc, centres de jour, etc.). pour les centres de jour, ce relevé incluait les données d’utilisation recueillies à l’aide du logiciel jedi par quatre des cinq centres de jour et des informations similaires recueillies dans les dossiers des clients, pour le cinquième centre qui n’utilisait pas ce logiciel. période d’observation les données relatives aux caractéristiques des personnes âgées ont été recueillies entre mai et novembre . les données obtenues des cj sur les présences et les activités réalisées couvraient les années et . pour chaque individu, l’information a été relevée pour une période de six mois, allant de trois mois avant à trois mois après la date du questionnaire. cette période a été retenue en considérant deux facteurs importants. puisque cette étude s’intéresse aux liens entre les caractéristiques des individus et les activités auxquelles ils ont participé et parce que les caractéristiques de santé des personnes âgées sont susceptibles de changer rapidement, une courte période d’observation devait être privilégiée. elle devait toutefois être suffisamment longue pour englober un échantillon représentatif des activités offertes à chaque participant, malgré les absences qui peuvent être fréquentes pour certains d’entre eux. variables à l’étude caractéristiques des participants les participants sont décrits à l’aide de variables sociodémographiques, d’indicateurs de santé et de variables d’utilisation des services de santé. neuf de ces variables (âge, sexe et sept indicateurs de santé), traitées sous une forme dichotomique, ont servi à l’identification des profils de participants lors des analyses en regroupement. les autres variables ont été utilisées pour la description de l’échantillon et pour la validation nomologique des profils créés. les variables sociodémographiques retenues sont l’âge, le sexe, l’état civil, l’éducation, le pays de naissance, la langue d’usage et la cohabitation avec une personne de soutien. elles ont été choisies parce que des études antérieures ont démontré des différences dans l’utilisation des cj en fonction de ces variables (baumgarten et coll., ; henry et capitman, ; savard et coll., ; zarit, stephens, townsend, greene et leitsch, ). les indicateurs de l’état de santé considérés sont ceux qui permettront de faire des liens avec les divers sous-programmes décrits dans le cadre de référence (acaq, ), sauf pour le sous-programme relié aux facteurs socio-environnementaux, pour lequel il n’y a pas de données correspondantes fiables. ainsi, les variables suivantes ont été retenues : la capacité fonctionnelle, la présence de troubles sensoriels, la présence de troubles cognitifs, le nombre et le type de problèmes de santé physique, ainsi que la présence de symptômes de dépression. les variables d’utilisation des services de santé qui ont été saisies sont les suivantes : le fait de recevoir les services intégrés du projet sipa ou les services réguliers du clsc (groupe contrôle), la fréquence de la participation au centre de jour, la fréquence de l’aide du clsc pour ses activités de vie quotidienne ou domestique pendant la période d’observation, la présence et le nombre de jours d’hospitalisation ainsi que la présence d’hébergement temporaire pendant la période d’observation. les neuf variables ayant servi à l’identification des profils de participants lors des analyses en regroupement ont été opérationnalisées de la façon suivante : les variables sociodémographiques considérées sont l’âge et le sexe. deux groupes d’âge ont été créés : ans et plus vs ans ou moins. des analyses antérieures nous indiquaient que les personnes de ans et plus étaient moins nombreuses à utiliser le cj. ce critère semble donc intéressant pour distinguer les divers groupes de participants. la capacité fonctionnelle est évaluée par la section des soins personnels du older american resources and services (oars) (fillenbaum, ). cette échelle comporte sept énoncés qui évaluent la capacité d’accomplir ses soins personnels (s’habiller, manger, contrôler ses sphincters, etc.) et sept énoncés qui évaluent la capacité d’accomplir diverses tâches de la vie domestique (utiliser le téléphone, magasiner ou faire l’épicerie, préparer les repas, etc.). les résultats possibles vont de à , un résultat plus élevé indiquant une plus grande autonomie. deux groupes ont été créés : les personnes plus autonomes que la moyenne ( et plus à l’échelle oars) vs les moins autonomes ( et moins à l’échelle oars). des analyses antérieures nous indiquaient que les personnes âgées ayant un résultat de ou plus à l’échelle oars, étaient moins nombreuses à utiliser le cj. la présence de troubles sensoriels a été évaluée en demandant aux répondants s’ils avaient aucune, un peu ou beaucoup de difficulté à reconnaître des personnes, à lire ou à entendre, même en utilisant les aides techniques appropriées (lunettes, appareil auditif) le cas échéant. pour les analyses, une variable dichotomique a été créée : aucune ou peu de difficulté pour chacune de ces trois activités ou beaucoup de difficulté pour au moins une des trois activités. la présence de troubles cognitifs est mesurée par le short portable mental status questionnaire (spmsq) (pfeiffer, ). ce questionnaire comporte questions évaluant principalement la mémoire et l’orientation. pfeiffer ( ) suggère qu’un résultat de trois erreurs ou plus indique un déficit cognitif possible pour une personne qui a une éducation de niveau secondaire. il suggère de permettre une erreur de plus aux personnes qui n’ont pas fréquenté l’école secondaire et une erreur de moins à ceux qui ont fréquenté le collège ou l’université. il recommande aussi d’accorder une erreur de plus aux afro-américains. cette correction pour l’origine ethnique a été adaptée au contexte multiethnique de montréal, en accordant une erreur de plus aux personnes qui ne sont pas nées au canada. en utilisant les critères suggérés par pfeiffer, foreman ( ) a obtenu un coefficient de prévision d'un test positif de , . pour les personnes qui n’avaient pas la capacité de répondre au spmsq (difficulté de communication reliée à la connaissance de la langue ou à un problème de santé), la présence de troubles cognitifs est notée lorsque le questionnaire indique qu’un substitut est utilisé parce que la personne souffre de troubles cognitifs ou lorsqu’à la question sur les problèmes de mémoire tirée de l’étude established populations for epidemiological studies of the elderly (epese) (cornoni-huntley, brook, ostfeld, taylor et wallace, ), le substitut indique que la personne souffre de la maladie d’alzheimer ou de problèmes de mémoire attestés par un médecin. pour évaluer la santé physique des personnes âgées, le questionnaire demandait aux répondants d’indiquer s’ils présentaient l’une ou l’autre des conditions tirées de l’étude epese (cornoni-huntley et coll., ), et dans l’affirmative, si ce problème était confirmé par un médecin. ces conditions incluent la présence de : haute tension; maladie de cœur; problèmes de circulation; accident vasculaire cérébral; diabète; problèmes respiratoires; rhumatisme ou arthrite (douleur aux articulations ou aux os); tumeur ou cancer; problèmes émotionnels; maladie de parkinson; problèmes de mémoire ou maladie d’alzheimer; problèmes de vessie, de reins ou de prostate; cataractes; glaucome; problèmes d’estomac (gastrite, ulcères, hernie hiatale); fracture de hanche ou de jambe récente (dans la dernière année). pour créer un indicateur de l’état de santé physique, deux de ces conditions, soit la présence de problèmes émotionnels et la présence de problèmes de mémoire ou de maladie d’alzheimer, ont été exclues. la présence de cataractes et de glaucome ont été regroupées pour indiquer la présence de problèmes aux yeux. le nombre de problèmes de santé attesté par un médecin parmi ces conditions a été retenu comme premier indicateur de la santé physique. pour les analyses, deux groupes sont créés : les personnes qui ont davantage de problèmes que la médiane ( ou plus) vs les autres ( ou moins). cette distinction semble cliniquement significative pour les responsables de cj. deux autres indicateurs de santé physique ont été retenus : la présence d’un problème qui entraîne des incapacités locomotrices (avc, parkinson et fracture de hanche ou de jambe récente) et la présence d’au moins un autre problème parmi les suivants : maladie de cœur; problèmes respiratoires; diabète; tumeur; problèmes de vessie, de reins ou de prostate; problèmes d’estomac. la présence de problèmes articulaires ou rhumatismes n’est pas considérée dans les problèmes qui entraînent des incapacités locomotrices parce que les personnes âgées peuvent présenter ces problèmes sans limitation de leurs capacités locomotrices. la santé psychologique a été mesurée par l’Échelle de dépression gériatrique, version courte (edg) (bourque, blanchard et vézina, ; sheikh et yesavage, ). les résultats possibles pour la forme courte vont de à . un résultat de ou plus indique la présence possible de dépression. cette donnée n’est disponible que pour les personnes qui répondaient elles-mêmes au questionnaire, soit des sujets. lorsque le résultat à l’Édg n’est pas présent, la personne est considérée comme n’ayant pas de symptômes dépressifs. la question de l’epese portant sur les troubles émotifs, qui demande si la personne souffre de problèmes émotionnels (nervosité, dépression, anxiété ou insomnie) et qui était disponible pour tous les sujets, n’a pas été retenue. en effet, cette question est trop générale et ne peut représenter une estimation adéquate de la présence de signes dépressifs. activités au centre de jour les activités auxquelles chaque individu participait à chacune de ses présences en centre de jour ont été colligées. pour quatre des cinq cj, cela s’est fait à partir du registre quotidien des activités du logiciel jedi. ce logiciel permet à chaque cj de créer sa propre liste d’activités, puis d’attribuer à chaque client la liste des activités auxquelles il est censé participer à chacune de ses visites. le logiciel génère ensuite, pour chaque jour, la liste des clients de la journée avec les activités associées à chacun. À la fin de chacune des journées, les intervenants suppriment les participants absents, les activités annulées, et pour chaque client présent, ils éliminent les activités auxquelles il n’a pas effectivement participé et ajoutent les activités non prévues auxquelles il a participé, puis sauvegardent ces informations dans le registre quotidien d’activités. les mêmes informations ont été recueillies à partir du registre des présences et de l’horaire des activités consignés au dossier des clients, pour le centre qui n’utilisait pas ce logiciel. dans ce cas, les présences, les absences et les activités spéciales comme les fêtes ou les sorties sont inscrites chaque jour sur le registre de présences de chaque participant. toutefois, l’horaire des activités prévues pour chacun est révisé seulement périodiquement et la non-participation occasionnelle à une activité (par exemple si une personne manque le groupe d’exercices pour rencontrer individuellement l’infirmière) n’est pas enregistrée. il faut noter que seules les activités de groupe sont considérées dans cette étude, parce que les cinq cj ne colligeaient pas tous quotidiennement les activités individuelles réalisées auprès des personnes âgées. de même, les activités d’accueil et les périodes de repos n’ont pas été prises en compte. bien que seulement certains centres inscrivaient ces activités à leurs registres statistiques, presque tous les offraient. il aurait été donc inadéquat de calculer un nombre précis de présences à ces activités seulement pour les centres qui les enregistraient. les variables pour l’étude et la catégorisation des activités sont les activités de groupe recensées dans les registres d’activités. pour comparer les activités offertes à celles recommandées, les variables utilisées sont reliées aux huit catégories d’activités établies à l’étape de la catégorisation des activités. le fait d’avoir bénéficié ou non de chacune de ces catégories d’activités a été enregistré. de plus, le nombre de jours auxquels chaque individu a participé à chacune des catégories d’activités a été dénombré. si le registre des activités contenait deux activités de la même catégorie le même jour, une seule participation à cette catégorie était enregistrée pour cette journée. pour tenir compte de la variation de participation des individus (certains n’avaient qu’une ou deux présences au cj pendant la période de semaines et d’autres en comptaient jusqu’à ), le nombre de participations à chacune des catégories d’activités a ensuite été calculé en pourcentage des jours de présence au cj. cette variable donne une indication de l’intensité de l’exposition à chacune des catégories d’activités (elle ne tient cependant pas compte de la durée de chacune des activités au cours d’une journée). enfin, le fait d’avoir participé au cj à l’intérieur d’un groupe spécifique pour les personnes qui ont des atteintes cognitives a aussi été relevé. analyse des données profils de participants pour décrire les participants, des statistiques descriptives (moyenne, fréquence) ont été d’abord calculées pour l’ensemble des participants. puis, des analyses en regroupement ont été effectuées pour créer des profils de participants ayant un ensemble de caractéristiques similaires, en considérant les variables suivantes : âge, sexe, capacités fonctionnelles, nombre de problèmes de santé, présence de problèmes sensoriels importants, de troubles cognitifs, de problèmes de santé qui entraînent des incapacités locomotrices, d’autres problèmes de santé et de symptômes dépressifs. comme suggéré par everitt, landau et leese ( ), les résultats de plusieurs méthodes d’analyses en regroupement ont été comparés, soit deux méthodes hiérarchiques (ward, distance moyenne) et une méthode d’optimisation (méthode des nuées dynamiques ou k-means). les résultats des méthodes hiérarchiques ont été utilisés pour déterminer les nombres de groupes possibles, nombres qui furent entrés comme paramètre dans les analyses avec la méthode des nuées dynamiques. deux séries d’anova ont ensuite été effectuées pour identifier les différences significatives dans les caractéristiques des membres de chacun des groupes créés par ces analyses. la première série portait sur les variables déjà incluses dans les analyses en regroupement, pour confirmer que les différences identifiées étaient statistiquement significatives pour toutes ces variables. la seconde série portait sur les variables sociodémographiques et sur les variables d’utilisation des services non incluses dans les analyses en regroupement, pour tester la validité nomologique des profils créés. si les profils créés représentent vraiment des groupes de participants ayant des caractéristiques de santé et d’autonomie semblables, les profils devraient différer quant à la cohabitation avec une personne de soutien, de même que pour la majorité des variables d’utilisation des services de santé. toutefois, le pourcentage d’individus recevant les services intégrés du projet sipa ne devrait pas varier selon les profils, puisque la sélection des individus pour le groupe expérimental du projet sipa était aléatoire. les profils pourraient aussi différer quant au niveau d’éducation puisque la présence de certaines conditions de santé est corrélée à l’éducation, ainsi que pour la proportion d’immigrants, si les immigrants diffèrent dans les types de problèmes qui les amènent à demander des services de soutien à domicile. Étude et catégorisation des activités la catégorisation des activités a nécessité plusieurs étapes : ) validation des données; ) regroupement des activités similaires portant des noms différents; ) regroupement des activités selon leurs buts. pour valider les données et préciser les caractéristiques des activités enregistrées, nous avons rencontré les coordonnateurs des cinq centres à l’étude en , leur demandant des précisions sur les activités de l’année . bien que des biais de rappel soient toujours possibles, ceux-ci sont minimisés par le fait que les objectifs des cj et les programmes d’activités avaient peu changé pendant cette période. ces rencontres ont permis de constater que la majorité des centres inscrivaient aux registres statistiques les activités spécifiques auxquelles les participants assistaient, tels qu’artisanat, exercices, échanges (figure , modèle ). toutefois, pour certains groupes de participants, deux centres inscrivaient plutôt le nom d’un groupe de participants prédéterminés, alors que plusieurs activités pouvaient se dérouler à l’intérieur de ce groupe (figure , modèle ). les rencontres ont aussi permis de réaliser que des activités similaires portaient des noms différents dans les registres statistiques des divers centres (par exemple, les activités « mémo », « méli-mélo », « intello », « cognitif » étaient toutes des activités de stimulation cognitive). les activités similaires portant des noms différents ont donc été regroupées. pour les inscriptions effectuées selon le modèle , les activités réalisées ont été calculées en fonction des informations recueillies auprès du responsable du centre sur l’horaire type de ces groupes. par exemple, pour un groupe répit qui comportait à chaque présence des exercices physiques et de la stimulation cognitive, ainsi qu’en alternance des activités d’artisanat- bricolage ou des jeux physiques, nous avons inscrit des présences aux exercices physiques et à la stimulation cognitive pour chaque présence à ce groupe, ainsi qu’une présence aux activités d’artisanat pour % des présences à ce groupe et une présence aux jeux physiques pour % des présences à ce groupe. cette étape a permis de réduire la liste d’activités de à activités différentes. les activités résultant de ce premier processus de réduction ont ensuite été regroupées en fonction de leurs buts, à l’aide d’un groupe d’experts. l’ensemble des responsables de cj de la région de montréal a été invité à participer à ce groupe. sept de ces personnes, parmi les plus engagés dans les activités de la table de concertation des cj de la région et ayant en moyenne , années d’expérience en cj ont accepté l’invitation. ils ont participé à une rencontre au cours de laquelle des catégories d’activités ont été créées au moyen d’une méthode adaptée de la technique du groupe nominal (delbecq, van de ven et gustavson, ) qui comportait trois étapes. premièrement, le groupe d’experts a été invité à générer une liste de buts pour les interventions en centre de jour. deuxièmement, chaque expert a été appelé à choisir, dans la liste générée, un maximum de huit buts qu’il considérait comme les buts principaux des cj. seuls les buts qui ont reçu plus de % des votes ont été conservés. après ce vote, sept buts ont été retenus. troisièmement, le groupe d’experts a été appelé à voter sur les buts de chacune des activités recensées dans les cj à l’étude, à partir de la liste de sept buts générés précédemment. même s’il est possible qu’une activité permette d’atteindre plusieurs buts, chaque participant devait forcer le choix d’un seul but par activité. lors de l’analyse des résultats de ce vote, lorsqu’il y avait dispersion des votes, un maximum de deux buts a été conservé pour chaque activité. cela a mené à une classification comprenant huit grandes catégories d’activités. adéquation des activités pour chaque profil de participants avant de se prononcer sur l’adéquation des activités pour chaque profil de participants, il a fallu compiler les types d’activités dont ont bénéficié les membres de chaque profil, puis déterminer les activités recommandées pour chacun. pour chaque profil de participants, des statistiques descriptives ont été calculées pour ) le pourcentage d’individus ayant participé à chacune des catégories d’activités et ) pour les individus ayant participé aux activités d’une catégorie donnée, la moyenne de l’intensité d’exposition à cette catégorie d’activité. puis, des anova ont permis de déterminer les différences significatives entre les divers profils de participants, pour la participation et l’intensité d’exposition à chaque type d’activité. les activités recommandées pour chaque profil de participants ont été déterminées de deux manières : d’abord à partir des recommandations d’activités pour les divers sous- programmes incluses dans le cadre de référence des centres de jour (acaq, ), puis à partir des activités recommandées par le groupe d’experts consultés. pour chaque sous- programme décrit dans le cadre de référence, les membres du groupe d’experts devaient indiquer, par ordre de priorité, les cinq activités qu’il serait le plus pertinent d’offrir. soulignons qu’au moment de se prononcer sur ces activités, le groupe d’experts n’avait pas accès à la liste des activités recommandées par le cadre de référence, alors qu’il venait d’étudier la liste des activités offertes par les cj de cette étude. lors de l’analyse des résultats de ce vote, les activités ont été d’abord associées à la catégorie d’activités à laquelle ils appartenaient, selon les résultats obtenus à l’étape précédente. l’importance de chacune des catégories d’activités pour chaque sous-programme a été déterminée à l’aide d’un système de points, accordant points chaque fois qu’une catégorie apparaissait en première position, points pour chaque deuxième position, etc. les analyses statistiques ont été effectuées à l’aide du logiciel spss pour windows, version . . résultats description de l’échantillon les principales caractéristiques des participants sont présentées au tableau . la moyenne d’âge de l’échantillon est de , ans (± , ). les participants sont en majorité des femmes ( , %) et des veuves ou veufs ( , %). l'étude ayant été menée dans deux quartiers à caractère multiethnique de la ville de montréal, on observe que , % des participants sont nés dans un pays autre que le canada. ces immigrants vivent au canada depuis plusieurs années (moyenne de , ans ± , ) et seuls , % sont au canada depuis moins de dix ans. près de % des participants ont identifié une personne de soutien principale. on observe que % des participants sont mariés et que le conjoint est la personne de soutien pour % des personnes mariées ou % de l’échantillon total. les enfants sont la personne de soutien principale pour , % des participants, et environ % d’entre eux n’habitent pas avec le parent dont ils prennent soin. insérer le tableau près d’ici les participants de cette étude présentent en moyenne , (± , ) problèmes de santé physique parmi les conditions incluses dans cette variable. les capacités fonctionnelles des participants sont très variées, les résultats allant de à à l’échelle oars. les troubles cognitifs sont présents chez , % des participants et près du tiers de l’échantillon présente au moins un problème sensoriel important. de plus, , % de ceux qui ont répondu à l’Édg présentent des symptômes de dépression. ces personnes sont inscrites à leur centre de jour à raison de , (± , ) fois par semaine en moyenne, toutefois les présences réelles sont en moyenne d’un peu moins d’une fois par semaine ( , ± , présences en semaines d’observation). près des deux tiers des participants reçoivent de l’aide à domicile de leur clsc pour les activités quotidiennes ou domestiques, et ce, en moyenne à raison de , (± , ) fois par semaine. les profils de participants les analyses en regroupement ont permis de classer les clients qui présentent des caractéristiques similaires en quatre groupes (tableau ). les résultats obtenus avec la méthode des nuées dynamiques (k-means), qui fait partie des méthodes dites d’optimisation des regroupements, sont présentés. selon everitt et collaborateurs ( ), ce type de méthode permet d’augmenter l’homogénéité à l’intérieur des groupes et ainsi d'accroître la distance entre les groupes. c'est aussi ce que nos données ont démontré. les méthodes hiérarchiques (ward, distance moyenne) ont créé des groupes moins contrastés. insérer le tableau près d’ici les groupes et sont composés surtout de personnes plus autonomes que la moyenne, alors que les groupes et comprennent majoritairement des personnes moins autonomes que la moyenne. le groupe est composé principalement de femmes qui présentent peu d’incapacités, sont relativement intactes au plan cognitif, mais semblent présenter une plus grande fragilité en raison d’un âge avancé, d’un grand nombre de problèmes de santé et de symptômes dépressifs. pour y référer ultérieurement à l’aide d’une caractéristique principale, nous retiendrons la fragilité. le groupe est composé principalement de femmes un peu plus jeunes que la moyenne. en général, les problèmes de santé des membres de ce groupe sont peu nombreux. par exemple, cinq personnes n’ont que des troubles cognitifs, quatre n’ont que des problèmes de vision et un autre problème de santé (ex. : haute tension artérielle ou rhumatisme), deux n’ont que des symptômes dépressifs et trois n’ont aucun problème de santé parmi la liste de problèmes présentés. seulement cinq membres de ce groupe ont un nombre de problèmes de santé plus élevé que la moyenne et ces cinq personnes sont plus autonomes que la moyenne (oars de à ). ce sont des personnes qui semblent fréquenter le centre de jour plus tôt dans le processus d’apparition des incapacités. bien que ce terme ne reflète pas nécessairement la réalité de chacun des individus du groupe, nous les qualifierons d’utilisateurs précoces. le groupe est composé surtout de femmes plus âgées, peu autonomes et qui présentent, pour la plupart, des troubles cognitifs. la caractéristique distinctive de ce groupe serait les incapacités d’origine cognitive. le groupe est composé surtout d’hommes plus jeunes et moins autonomes que l’ensemble de l’échantillon, qui présentent principalement des problèmes de santé qui entraînent des incapacités locomotrices, soit les avc, la maladie de parkinson ou les fractures de hanche ou de jambe récentes. la caractéristique distinctive de ce groupe serait les incapacités d’origine motrice. les anova confirment les différences entre les caractéristiques des membres de chacun des groupes pour chacune des variables ayant servi à créer la classification. elles confirment aussi des différences significatives pour un ensemble de variables n’ayant pas été utilisées dans la création des regroupements : pays de naissance, cohabitation avec une personne de soutien, aide reçue du clsc et nombre de jours d’hospitalisation. les catégories d’activités en centre de jour selon le groupe d’experts, les activités en centre de jour visent sept principaux buts : ) maintien des capacités physiques; ) maintien de l’autonomie fonctionnelle; ) maintien des fonctions cognitives; ) amélioration de l’affect; ) amélioration de la qualité du réseau de soutien (par le soutien direct aux proches aidants); ) prévention et promotion de la santé; ) intégration sociale (incluant maintien ou réapprentissage des habiletés sociales et participation à la communauté). le regroupement des activités en fonction de leurs buts, en retenant un maximum de deux buts par activité, a mené à la création de huit catégories d’activités. ces catégories, ainsi que les buts identifiés pour chacune, sont présentées au tableau . on note qu’aucune des activités recensées dans cette étude ne vise le soutien direct aux proches aidants puisqu’un seul centre offrait des groupes de soutien ou d’éducation pour les aidants, mais il n’enregistrait pas les présences des aidants dans le registre des activités du participant au cj. enfin, la dernière colonne du tableau présente les activités associées à chacune des catégories d’activités, ainsi que le nombre de centres de jour qui offraient ces activités. insérer le tableau près d’ici recommandations d’activités les activités recommandées pour la clientèle de chacun des six sous-programmes selon le cadre de référence (acaq, ) sont présentées au tableau . pour chaque catégorie d’activités, le rang indique le degré de priorité à lui accorder dans chacun des sous-programmes selon le groupe d’experts. insérer le tableau près d’ici participation aux diverses catégories d’activités le tableau présente le nombre d’individus qui ont bénéficié de chacune des catégories d’activités puis, pour ceux qui ont bénéficié des activités de la catégorie, la moyenne de l’intensité d’exposition. insérer le tableau près d’ici près de % des individus ont participé à des groupes d’intégration sociale et à des groupes d’exercices physiques. ces activités sont les plus fréquentes puisqu’en moyenne, les personnes qui ont participé à ces activités l’ont fait lors de à % de leurs présences au cj. suivent les sports et jeux physiques, les activités fonctionnelles, les activités de prévention et de promotion de la santé, ainsi que les activités de stimulation cognitive qui rejoignent de à % des individus lors de à % de leurs présences. enfin, les activités qui rejoignent le moins grand nombre de participants sont les groupes spécifiques pour un problème physique commun et les activités musicales et de réminiscence, auxquelles ont participé respectivement % et % des individus, lors de à % de leurs présences. on peut aussi noter que % des individus ont participé aux activités du cj lors des journées ou des groupes destinés aux personnes qui ont des troubles cognitifs. en moyenne, les participants ont bénéficié d’activités appartenant à , (± , ) catégories différentes, parmi les huit catégories étudiées. différences entre les activités dont ont bénéficié les membres des divers profils les membres du groupe sont parmi les plus nombreux à avoir bénéficié de groupes spécifiques pour un problème physique commun et d’activités fonctionnelles. ils sont moins nombreux dans les journées destinées aux personnes atteintes de troubles cognitifs. ceux du groupe sont parmi les plus nombreux à avoir bénéficié de groupes d’exercices généraux et d’activités fonctionnelles. ils sont aussi peu nombreux dans les journées destinées aux personnes atteintes de troubles cognitifs. ceux du groupe sont parmi les plus nombreux à avoir bénéficié de groupes d’exercices généraux et les moins nombreux pour les groupes pour un problème physique commun et parmi les moins nombreux à participer aux activités fonctionnelles. ils sont par contre plus nombreux dans les journées destinées aux personnes atteintes de troubles cognitifs. ceux du groupe sont parmi les moins nombreux à avoir bénéficié de groupes d’exercices généraux et parmi les plus nombreux dans les groupes spécifiques pour un problème physique commun. comme ceux du groupe , ils sont parmi les moins nombreux à participer aux activités fonctionnelles et parmi les plus nombreux dans les journées destinées aux personnes atteintes de troubles cognitifs. en ce qui concerne l’intensité de l’exposition aux activités, on note des différences significatives pour quatre catégories d’activités : les exercices physiques, les groupes spécifiques, la stimulation cognitive ainsi que les sports et les jeux physiques. elles vont toutes dans le sens d’une plus grande régularité de participation pour les membres des groupes et . ces derniers ont aussi participé à un moins grand nombre de catégories d’activités que ceux des profils et . accord entre l’exposition aux divers types d’activités et les activités recommandées les membres du groupe présentent plusieurs problèmes de santé physique. ils sont aussi nombreux à présenter des symptômes dépressifs et des incapacités d’origine sensorielle, tout en étant majoritairement plus autonomes que la moyenne. les activités auxquelles ils ont participé ont donc été comparées aux activités recommandées pour les trois sous-programmes suivants : incapacités fonctionnelles d’origine sensorielle, santé physique et santé mentale (tableau ). on observe que les activités recommandées de façon prioritaire pour ces sous-programmes sont aussi des activités dont ont bénéficié la majorité des membres de ce groupe, à l’exception des activités de réminiscence qui peuvent être bénéfiques pour les personnes atteintes de dépression et auxquelles seulement la moitié du groupe a participé. on note aussi que les groupes spécifiques auxquels ils ont participé sont reliés à des problèmes physiques. on ne relève aucun groupe spécifique pour les problématiques sensorielles comme recommandé dans le cadre de référence. insérer le tableau près d’ici les membres du groupe se sont regroupés par le fait qu’ils sont majoritairement plus jeunes que l’ensemble des participants à l’étude et qu’ils présentent peu de problèmes de santé. ces caractéristiques ne permettent pas de les associer à un sous-programme particulier des cj. les besoins de chacun de ces individus sont associés à des sous- programmes différents. la comparaison avec les activités recommandées n’est donc pas possible pour ce groupe. les membres du groupe présentent, pour la plupart, des atteintes cognitives. les activités auxquelles ils ont participé ont donc été comparées aux activités recommandées pour le sous-programme relié aux incapacités fonctionnelles d’origine cognitive (tableau ). on observe ici que les activités dont ont bénéficié la majorité des membres de ce groupe sont les exercices physiques, les activités d’intégration sociale ainsi que les sports et les jeux physiques. malgré que les activités de stimulation cognitive et de réminiscence soient jugées prioritaires pour cette clientèle par le groupe d’experts consultés, un faible pourcentage des membres de ce groupe a participé à ce type d’activités. on note par ailleurs que ceux qui ont participé à de la stimulation cognitive l’ont fait avec une certaine régularité ( % de leurs présences). insérer le tableau près d’ici les membres du groupe présentent presque tous des problèmes de santé qui entraînent des incapacités locomotrices. les activités auxquelles ils ont participé ont donc été comparées aux activités recommandées pour le sous-programme relié aux incapacités fonctionnelles d’origine motrice (tableau ). on observe que les membres de ce groupe ont participé en grande majorité aux activités d’intégration sociale, aux exercices physiques et aux groupes spécifiques pour un problème physique commun. ces activités sont aussi celles qui sont recommandées de façon prioritaire pour ce groupe. on note aussi que tous les membres de ce groupe ont bénéficié d’exercices physiques, que ce soit dans des groupes d’exercices physiques généraux ou dans des groupes spécifiques pour un problème physique commun. insérer le tableau près d’ici discussion bien que largement présents dans la gamme des services de soutien à domicile, les cj ont été peu étudiés au canada. les études canadiennes recensées à ce jour portent essentiellement sur leur structure (gutman et coll., a, b; ross-kerr, warren et godkin, ; strang, greschuk, mcilveen, gadacz et neufeld, ; tourigny, côté, laberge, paradis et joubert, ) ou sur leurs résultats (baumgarten et coll., ; strain et coll., ), avec très peu d’attention apportée au processus d’intervention, les auteurs se limitant à décrire de façon succincte les activités offertes. dans cette étude exploratoire, nous avons cherché à vérifier l’adéquation entre les activités offertes dans les cj et les caractéristiques de santé et d’autonomie des utilisateurs, afin de combler une lacune dans les études actuelles. ce type de recherche est important et probablement préalable aux études sur l’efficacité des centres de jour, car une combinaison d’activités mieux adaptées aux besoins de chaque participant pourrait avoir une influence sur la capacité des cj à atteindre leurs objectifs reliés au maintien des capacités physiques, cognitives, affectives et d’intégration sociale, au répit offert aux familles et ultimement, au maintien dans la communauté. comme peu de chercheurs se sont intéressés à ce sujet jusqu’à maintenant, nous n’avons pas trouvé une classification reconnue des activités offertes en cj. les activités sont décrites et regroupées de façon différente dans chaque étude, en fonction des préférences des auteurs plutôt qu’en raison de fondements théoriques. nous avons fait appel à un groupe d’experts pour créer la classification utilisée dans la présente étude. malgré certaines différences, cette classification rejoint globalement celle proposée dans le manuel d’activités de norman et horton ( ), ce qui lui apporte une certaine validité apparente. ainsi, cette étude présente une méthode originale et structurée qui pourrait servir de référence pour des études similaires auprès d’un plus grand nombre de centres de jour. l’analyse en regroupement a permis d’identifier quatre profils de participants et d’examiner les activités dont ont bénéficié les membres de chacun de ces profils. l’importance de considérer de tels groupes vient de la nécessité de prendre en compte les multiples caractéristiques des participants dans la programmation des activités. par exemple, les personnes qui présentent des atteintes cognitives peuvent avoir des besoins différents selon leur niveau de capacités fonctionnelles. les différences statistiquement significatives observées dans l’utilisation des services de santé et dans les types d’activités dont ont bénéficié les membres de chacun des groupes confèrent une certaine validité apparente à ces regroupements. il y aurait certes lieu de tester leur robustesse en vérifiant s’ils peuvent être reproduits dans d’autres études. ils permettent tout de même d’apporter un éclairage intéressant sur les liens entre les activités en cj et les caractéristiques des utilisateurs. parmi les éléments mis en lumière par les différentes analyses de cette étude, on notera tout d’abord que les quatre profils de participants identifiés par les analyses en regroupement ne correspondent que partiellement aux six sous-programmes décrits dans le cadre de référence (acaq, ). d’autres observations nous amènent aussi à remettre en question l’existence réelle de ces sous-programmes dans les cj. par exemple, dans les recommandations de notre groupe d’experts, les activités de deux sous-programmes (incapacités fonctionnelles d’origine motrice et santé physique) semblaient relativement similaires. ensuite, les données empiriques ne démontrent aucune activité particulière pour les personnes qui présentent des difficultés sensorielles. on note aussi que les divers sous- programmes de ce cadre de référence distinguent les individus davantage en fonction de l’origine de leurs difficultés qu’en fonction de leur niveau fonctionnel. cependant, lorsqu’on planifie des activités de groupe, il semble important de tenir compte du niveau fonctionnel pour planifier des activités qui présentent le niveau de stimulation approprié aux capacités des participants. on constate que les membres du groupe , qualifié d’utilisateurs précoces, semblent fréquenter le centre de jour en raison d’un problème qui diffère pour chaque personne, mais avant que les incapacités reliées à cette condition ne deviennent importantes ( % sont dans la moitié la plus autonome de l’échantillon). on peut se demander si cette clientèle a réellement besoin de fréquenter un cj ou si elle pourrait fréquenter des ressources plus légères (groupes communautaires et associatifs) pour laisser les places en cj aux personnes qui présentent des besoins plus importants. cependant, surtout pour les personnes qui présentent une atteinte cognitive, plusieurs chercheurs recommandent que l’utilisation du cj débute à un stade plus précoce de la maladie afin de vraiment contribuer au soutien à domicile. lorsque le répit aux proches arrive tardivement dans le processus de maladie, les niveaux de stress et de fardeau sont déjà élevés et les démarches d’hébergement sont souvent en cours et ne peuvent être retardées (gaugler, kane, kane et newcomer, ; gaugler et zarit, ; gottlieb et johnson, ; zarit et coll., ). en ce qui concerne les activités offertes, on constate que les exercices physiques et les activités d’intégration sociale sont les activités dont ont bénéficié le plus grand nombre d’individus. ces activités correspondent aux besoins d’un grand nombre de personnes âgées qui fréquentent les cj. en effet, les activités d’intégration sociale sont recommandées pour tous les sous-programmes, tant dans le cadre de référence de l’acaq ( ) que par le groupe d’experts consultés, bien qu’avec un rang de priorité moindre pour les sous- programmes de santé physique et d’incapacités d’origine cognitive. selon ces mêmes sources, les exercices physiques sont aussi indiqués pour un grand nombre de sous- programmes, malgré que le degré de priorité de ce type d’activités ne soit élevé que pour deux des sous-programmes (incapacités d’origine motrice et santé physique). de plus, ces deux types d’activités sont facilement réalisables en groupe et probablement facilement acceptées par les participants des cj. les exercices physiques et les jeux physiques ne faisaient pas parties des activités prioritaires pour la clientèle atteinte de démence selon le groupe d’experts consultés pour cette recherche. nos données démontrent que, dans la réalité, les responsables de cj les offrent régulièrement à cette clientèle. les guides d’activités pour les personnes atteintes de démence leur donnent raison. selon ces guides, les activités physiques qui demandent peu d’apprentissage sont pertinentes pour favoriser la participation. de plus, elles permettent de stimuler le maintien des capacités physiques et de prévenir l’incapacité excessive; d’amener une saine fatigue qui diminue l’agitation et l’errance; de faire vivre des succès; et d’avoir du plaisir et de célébrer la vie (lindeman et coll., ; nissenboim et vroman, ). dans les cinq cj à l’étude, les groupes spécifiques sont tous des groupes d’exercices physiques pour un diagnostic ou un problème physique commun. les groupes spécifiques pour la santé mentale et les incapacités d’origine sensorielle ne semblent pas être offerts. s’ils existent, ils ne sont pas traités comme tels dans les données statistiques des cj et ils n’ont pas été identifiés lors de nos rencontres avec les coordonnateurs des cinq cj à l’étude visant à préciser les caractéristiques des activités recensées dans chacun des centres. certains groupes d’intégration sociale (ex. : groupe de valorisation) visaient certainement la prévention et la promotion de la santé mentale, mais n’étaient pas propres à un groupe d’individus ayant démontré des besoins particuliers. lorsque l’on s’intéresse aux différences entre les hommes et les femmes, on observe que parmi les quatre profils de participants identifiés, les hommes se retrouvent principalement dans un groupe de personnes moins autonomes, qui présentent un plus grand nombre de problèmes entrainant des incapacités locomotrices. les femmes se regroupent dans trois groupes distincts, suggérant pour les femmes une plus grande variété de raisons de fréquenter un cj. ceci est cohérent avec les résultats d’une première étude qui indiquaient que les hommes participent davantage au cj lorsqu’ils ont fait un avc et lorsqu’ils sont moins autonomes (savard et coll., ). comme on pouvait s’y attendre, les membres du groupe (incapacités d’origine cognitive) sont proportionnellement plus nombreux que ceux des autres groupes à avoir participé aux journées destinées aux personnes atteintes de troubles cognitifs. ce qui étonne, c’est que % des membres du groupe (incapacités d’origine motrice) ont participé à ces journées alors que seulement % de ces personnes présentent des troubles cognitifs. lorsqu’on analyse les données pour l’ensemble des personnes qui présentent une atteinte cognitive, on observe un résultat similaire : la participation aux journées destinées aux personnes atteintes de troubles cognitifs est constatée pour % des personnes qui ont une atteinte cognitive et % des personnes sans ce type d’atteinte. les membres du groupe sont majoritairement moins autonomes que la moyenne de l’échantillon. est-il possible que les lourdes pertes d’autonomie soient faussement associées à des pertes cognitives? il est aussi possible que notre étude sous-estime le nombre de personnes atteintes de troubles cognitifs. en effet, il se peut que le spmsq ne dépiste pas bien toutes les formes de troubles cognitifs. par exemple, contrairement au mini examen de l’état mental (folstein, folstein et mchugh, ), il n’y a aucune question sur les praxies ou la planification motrice dans le spmsq. les données démontrent que les activités de stimulation cognitive sont offertes autant aux membres du groupe (incapacités d’origine cognitive) qu’aux membres des autres groupes. un résultat similaire est observé lorsqu’on compare l’ensemble des personnes qui présentent des atteintes cognitives à celles qui n’en ont pas. ceci contraste avec les recommandations du cadre de référence de l’acaq et du groupe d’experts qui ne recommandent ces activités que pour les personnes qui présentent des atteintes cognitives. il est possible que des activités de stimulation cognitive de niveau avancé soient intéressantes pour des personnes sans atteinte cognitive et qu’elles puissent aussi être effectuées sous forme de jeux qui favorisent l’intégration sociale. malheureusement, les données dont nous disposions pour cette étude ne permettaient pas de différencier entre divers types de stimulation cognitive. de plus, bien que les études à ce sujet soient encore insuffisantes (pope, shue et beck, ), il existe certaines données voulant que la stimulation cognitive puisse aider à prévenir l’apparition de déficits cognitifs (wilson, mendes de leon, barnes, schneider, bienias et coll., ). par ailleurs, on peut remettre en question le fait que seules % des personnes qui ont des atteintes cognitives et seules % des personnes du groupe (qui inclut % de personnes avec des atteintes cognitives) aient participé à des activités de stimulation cognitive. en effet, ce type d’activités est présenté comme prioritaire pour cette clientèle par le groupe d’experts consultés et la recherche a aussi démontré l’utilité de la stimulation cognitive pour cette clientèle (knapp et coll., ; spector, orrell, davies et woods, ; spector et coll., ). pourquoi cet écart? il y a sans doute la difficulté à animer des activités de stimulation cognitive en groupe avec des personnes de niveaux cognitifs différents ou avec des personnes qui ont des atteintes très importantes. les intervenants en cj doivent aussi tenir compte de l’ensemble des besoins et des goûts des clients, comme des besoins prioritaires reliés à leur état de santé physique ou le manque d’intérêt à participer à la stimulation cognitive. il peut aussi exister une certaine perception chez les intervenants en cj voulant que la stimulation cognitive ne donne pas de résultats avec les personnes atteintes de troubles cognitifs. en effet, l’orientation à la réalité et la stimulation cognitive ont fait l’objet de critiques en raison de l’application trop mécanique de ces techniques dans le passé (spector et al., ). on observe aussi que peu de personnes ont bénéficié des activités de réminiscence. compte tenu des effets bénéfiques de ce type d’activités pour des personnes dépressives (anderson, ; bohlmeijer, smit et cuijpers, ; frazer, christensen et griffiths, ) et pour des personnes qui présentent des troubles cognitifs (woods, spector, jones, orrell et davies, ), on aurait pu s’attendre à ce qu’un grand nombre de membres du groupe (dont % présentent des symptômes dépressifs) et du groupe (dont % présentent des atteintes cognitives) aient participé à des activités de réminiscence. est-ce parce que ce type d’activités est mal connu des intervenants en centre de jour? est-ce en raison de la difficulté à regrouper les participants qui ont des besoins homogènes pour ce type d’activités? est-il possible que de telles activités aient été offertes à l’intérieur d’activités identifiées comme activités sociales, et qu’elles n’aient pas été répertoriées comme activités de réminiscence? ce sont là des questions importantes auxquelles les données de cette étude ne permettent pas de répondre. on peut tout de même recommander que les centres de jour s’assurent d’avoir suffisamment d’intervenants formés à l’intervention psychosociale pour animer ce type d’activités de groupe. la socialisation apportée par le centre de jour (webb, ), de même que les exercices (frazer et coll. ) offerts à la majorité des participants des cj, sont certes bénéfiques pour les personnes qui présentent des symptômes dépressifs. toutefois, d’autres approches ayant démontré des résultats probants (réminiscence, thérapie cognitive behaviorale -- voir frazer et coll., ) pourraient certainement être intégrées aux services offerts à cette clientèle. compte tenu de la grande proportion de participants en cj qui présentent des symptômes dépressifs, il serait approprié que les responsables de cj apportent une attention particulière aux services offerts à cette population. avant de terminer, un mot sur la fréquence de la participation aux diverses activités. sauf pour les exercices physiques et les activités d’intégration sociale, les sujets de cette étude participent aux autres catégories d’activités en moyenne à moins de % de leurs présences en cj. considérant que leur présence réelle au cj est d’un peu moins d’un jour par semaine en moyenne, on peut se demander si l’intensité d’exposition aux diverses activités proposées par les cj est suffisante pour engendrer les effets bénéfiques escomptés de chacune d’elles. toutefois, ces données moyennes sont insuffisantes pour porter un jugement. il y aurait surtout lieu de s’assurer d’une intensité d’exposition suffisante aux catégories d’activités prioritaires pour chaque profil de participants. nos données font ressortir très peu de différences dans l’intensité d’exposition à diverses activités en fonction des caractéristiques des participants, à l’exception de leur degré d’autonomie. les membres des profils et (moins autonomes), lorsqu’ils participent aux exercices physiques, à la stimulation cognitive, aux sports et aux jeux physiques, ainsi qu’à des groupes spécifiques, le font avec plus de régularité. puisque les exercices physiques, les sports et jeux physiques et les groupes spécifiques sont bénéfiques pour les incapacités d’origine motrice et que la stimulation cognitive de même que les sports et jeux physiques sont recommandés pour les incapacités d’origine cognitive, ces résultats sont encourageants. toutefois, on aurait pu s’attendre à trouver d’autres différences pour mieux refléter les besoins variés des divers profils de participants. limites de l’étude les statistiques colligées par les cj comportent certaines imprécisions. par exemple, certaines données sont enregistrées sous le nom d’un groupe qui pouvait contenir plusieurs types d’activités (par exemple, groupe répit) et nous avons fait des inférences sur les présences à chaque type d’activités à partir du pourcentage approximatif d’activités de chaque type à l’intérieur du groupe. puisqu’il est possible que la répartition réelle des activités ait varié légèrement par rapport à celle décrite, ou que certaines activités effectuées occasionnellement n’aient pas été mentionnées dans la description du groupe, ces données sont moins précises que celles où les présences sont enregistrées pour chaque type d’activités. ces variations ne semblent cependant pas majeures et ne devraient pas affecter les conclusions de l’étude. À l’époque où cette étude a été menée, on constatait un manque d’homogénéité dans les données consignées par les cj concernant l’état de santé des usagers. ainsi, l’analyse secondaire de données recueillies dans le cadre d’une étude plus large sur les services intégrés aux personnes âgées a permis d’obtenir des données valides tant sur les caractéristiques des individus que sur leurs présences en cj. toutefois, l’échantillon n’est pas pleinement représentatif de l’ensemble de la population qui fréquente les cj québécois. premièrement, ce n’est pas un échantillon aléatoire des personnes fréquentant les cinq centres étudiés. toutefois, selon les responsables de ces cinq centres, les caractéristiques des participants à cette étude seraient assez semblables à celles de la clientèle de leur cj, à l’exception de la proportion de personnes qui ont des atteintes cognitives, qui semble légèrement plus élevée dans la clientèle de leur cj (entre et %) que chez les participants à cette étude ( %). deuxièmement, cet échantillon n’inclut que des personnes de ans et plus. ces dernières ont été recrutées majoritairement parmi les clients des services à domicile des clsc. bien que certains cj montréalais acceptent d’autres types de clients, ceux de plus de ans forment plus de % de leur clientèle et plus de % y sont dirigés par les services de soutien à domicile de leur clsc (regroupement des centres d'hébergement et de soins de longue durée de la région de montréal, ). troisièmement, cet échantillon n’inclut que des personnes fréquentant l’un des cinq cj d’un secteur bien délimité de l’ile de montréal. la population des deux territoires de clsc sur lequel le projet s’est déroulé est plus multiethnique que celle de l’ensemble de l’île de montréal ( à % d’immigrants contre % pour montréal) (agence de la santé et des services sociaux de montréal, a; b). il s’agit donc d’un échantillon d’une grande métropole à composition multiethnique comme on en observe de plus en plus dans les différentes métropoles des pays occidentaux. enfin, malgré cette limite, les résultats sont possiblement au moins en partie représentatifs des activités des cj de la région de montréal, les responsables des cj de cette région ayant entrepris une réflexion commune sur les orientations des cj (regroupement des centres d'hébergement et de soins de longue durée de la région de montréal, ; ). on peut cependant penser que des résultats différents auraient pu être obtenus dans les cj des régions rurales de la province puisqu’en plus de desservir une population aux caractéristiques différentes, ceux-ci doivent souvent adapter leur programmation en fonction des possibilités de transport sur un vaste territoire. on notera toutefois l’importance d’offrir des services adéquats aux personnes âgées de la région métropolitaine, puisque % des personnes âgées du québec vivent dans la région métropolitaine de montréal (institut de la statistique du québec, - ; ). conclusion les résultats de cette étude seront utiles aux gestionnaires de cj et aux planificateurs de services pour les personnes âgées. ils démontrent une concordance partielle entre les activités offertes et les besoins des utilisateurs. cette concordance apparaît plus grande pour les personnes qui présentent des problèmes de santé physique ou des incapacités d’origine motrice. bien qu’ils mériteraient d’être confirmés par des études plus poussées, les éléments mis en lumière dans cette étude soulèvent des questions sur l’adéquation entre la programmation d’activités et les objectifs visés, en particulier pour les personnes atteintes de troubles cognitifs et celles qui présentent des symptômes dépressifs. ils suggèrent la nécessité de revoir la planification des activités pour assurer une offre de services qui tienne davantage compte des besoins des participants et des interventions démontrées efficaces. les résultats de cette étude identifient quatre profils de participants qui pourraient servir de point de départ à cette révision de la programmation des activités. dans le futur, des recherches plus approfondies sur les liens entre le type d’activités offertes en cj et l’atteinte des objectifs des cj seraient pertinentes. de plus, puisqu’une fréquentation régulière du cj semble nécessaire pour induire des effets bénéfiques, des recherches sur les liens entre les activités offertes et la participation au cj constituent une étape préalable essentielle. enfin, cette étude fait ressortir l’importance d’adopter une classification des activités de cj qui permettrait un recueil de données plus fiable et subséquemment une meilleure comparaison entre les cj. notes le logiciel jedi (pour jonction et diffusion informatiques, la compagnie qui a créé ce logiciel), est un système de bases de données et de rapports périodiques créé sur la plateforme access de microsoft et conçu spécialement pour recueillir des données sur les clients, les activités et les présences en cj. figure : deux modèles d’horaire d’activités en cj et lien avec le registre des activités tableau : caractéristiques des participants moyenne ±±±± écart type ou pourcentage caractéristiques sociodémographiques Âge , (± , ) sexe (proportion de femmes) , % État civil - célibataire (jamais marié) - marié ou conjoint de fait - veuf - séparé ou divorcé , % , % , % , % Éducation - aucune - primaire - secondaire - école technique ou de métiers - universitaire -ne sait pas ou refus de répondre , % , % , % , % , % , % pays de naissance - canada - autre , % , % langue - français à la maison et avec professionnels - anglais à la maison et avec professionnels - anglais ou français avec les professionnels (pas à la maison) - autre langue à la maison, langue avec les professionnels est manquante - autre langue (ni anglais ni français) même avec les professionnels , % , % , % , % , % lien personne âgée - personne de soutien - aucune personne de soutien - conjoint(e) - autre co-résident (enfant) - autre, non co-résident (enfant) , % , % , % ( , %) , % ( , %) indicateurs de santé capacités fonctionnelles selon l’oars , (± , ) présence de troubles sensoriels , % présence de troubles cognitifs , % nombre de problèmes de santé physique , (± , ) présence de problèmes de santé qui entrainent des incapacités locomotrices présence d’autres problèmes de santé physique , % , % présence de symptômes dépressifs présence de symptômes dépressifs , % , % variables d’utilisation des services sipa (vs contrôle) , % fréquence d’inscription au centre de jour (jours par semaine) , (± , ) présence d’aide du clsc pour avd ou avq fréquence de cette aide (nombre de fois par semaine) , % , (± , ) présence d’au moins un épisode d’hospitalisation jours d'hospitalisation , % , (± , ) présence d’au moins un épisode d’hébergement temporaire , % ces personnes utilisent le français ou l’anglais à la maison parfois en plus d’une autre langue les résultats possibles à l’oars vont de à , un résultat plus élevé indique une plus grande autonomie n= car disponible seulement pour les personnes qui répondent elles-mêmes au questionnaire n= lorsque les individus dont les résultats sont manquants sont considérés comme ne présentant pas de symptômes dépressifs tableau : différences entre les caractéristiques des membres des groupes formés par les analyses en regroupement variables groupe n= groupe n= groupe n= groupe n= anova moyenne et écart type ou pourcentage moyenne et écart type ou pourcentage moyenne et écart type ou pourcentage moyenne et écart type ou pourcentage p variables utilisées pour créer les groupes age (% de et +) % % % % , * sexe (% de femmes) % % % % , * oars (% plus autonomes que la moyenne) % % % % , * problèmes sensoriels % % % % , * troubles cognitifs % % % % , * prob.� incapacités locomotrices % % % % , * prob. santé autre % % % % , * nombre prob santé (% de ou +) % % % % , * troubles dépressifs % % % % , * valeur des variables continues ou combinées Âge , ± , , ± , , ± , , ± , , * avq + avd selon l’oars , ± , , ± , , ± , , ± , , * nombre de prob de santé / , ± , , ± , , ± , , ± , , * prob.� incapacités locomotrices - avc - parkinson - fracture récente % % % % % % % % % % % % , * , * , variables pour la validation nomologique des groupes Éducation - aucune ou primaire - secondaire ou technique - universitaire % % % % % % % % % % % % , pays naissance autre que canada % % % % , * cohabite avec personne de soutien % % % % , * fréquence d’inscription au cj , ± , , ± , , ± , , ± , . aide du clsc pour avd ou avq fréquence de l’aide (nombre de fois par semaine) % , ± , % , ± , % , ± , % , ± , , * , * avec épisode d’hospitalisation jours d’hospitalisation , % , ± , , % , ± , , % , ± , , % , ± , , , * avec épisode d’héb. temporaire , % , % , % , % , sipa (vs contrôle) , % , % , % , % , caractéristique distinctive du groupe personnes fragiles utilisateurs précoces incapacités d’origine cognitive incapacités d’origine motrice dont % chez des personnes avec atteinte cognitive et % chez des personnes sans atteinte cognitive tous pour des personnes qui ont une atteinte neurologique (avc, parkinson) les résultats possibles à l’oars vont de à , un résultat plus élevé indique une plus grande autonomie tableau : activités en centre de jour, selon leurs buts nom de la catégorie (nombre de cj qui l’offre) but de ces activités (commentaires sur la classification) activités (nombre de cj qui l’offre) a. exercices physiques ( ) . maintien des capacités physiques exercices généraux ( ) musique et mouvement ( ) groupe de marche ( ) exercices adaptés (assis) ( ) exercices en piscine ( ) b. groupes spécifiques pour un problème physique commun ( ) . maintien des capacités physiques . maintien de l’autonomie fonctionnelle groupe parkinson ( ) groupe avc ( ) groupe diabète ( ) groupe arthrite ( ) groupe de dextérité manuelle ( ) groupe de douleur ( ) c. activités fonctionnelles ( ) . maintien de l’autonomie fonctionnelle . amélioration de l’affect (ces activités ont en commun qu’elles permettent de réaliser quelque chose). arts plastiques ou artisanat ( ) cuisine ( ) horticulture ( ) beauté (coiffure, maquillage, soins des ongles)( ) thérapie animale ( ) d. stimulation cognitive ( ) . maintien des fonctions cognitives stimulation cognitive ( ) stimulation sensorielle ( ) e. activités musicales ou de réminiscence ( ) . maintien des fonctions cognitives . amélioration de l’affect (dans les écrits scientifiques, la réminiscence est utilisée pour améliorer l’affect chez les personnes dépressives (frazer et coll., ) et l’affect et les fonctions cognitives chez celles avec tr. cognitifs (woods et coll., )) musique ou musicothérapie ( cj, dont un cj qui a plusieurs groupes distincts : composition musicale, exploration sonore, lames sonores, écoute musicale). réminiscence ( ) chant ( ) f. sports et jeux physiques ( ) . maintien des capacités physiques : intégration sociale (le groupe d’experts mentionne ces activités comme moyen de maintenir les capacités physiques pour le sous-programme d’incapacités d’origine motrice et comme moyen de favoriser l’intégration sociale pour les sous-programmes des incapacités d’origine cognitive ou sensorielle) jeux physiques ( ) (jeux de sac de sables, curling adapté, volleyball adapté, quilles adaptées, etc.) g. intégration sociale ( ) . amélioration de l’affect . intégration sociale (la description des activités des groupes de valorisation/croissance indiquent bien qu’ils visent les objectifs d’affect et intégration : discussion sur thèmes affectifs (ex : exprimer des émotions en groupe, accepter les pertes physiques ou psychologiques), acquérir des stratégies de communication efficaces pour faciliter l’intégration à un réseau social, etc.) jeux de table (cartes, scrabble, bingo, etc.) ( ) sorties ( ) fêtes, dîner anniversaire ou spectacles ( ) infos communautaires ou psychosociales ( ) Échanges (période formelle) ( ) valorisation/croissance (appartenance, santé mentale, bien-être) ( ) actualités ( ) journal ( ) ordinateur – internet ( ) activités spirituelles (messe, pastorale, préparation des fêtes juives) ( ) valorisation par des tâches utiles au cj ou au clsc auquel il est affilié ( ) participation à la communauté ( ) comité planification clients ( ) poésie – écriture ( ) h. prévention et promotion de la santé ( ) . prévention et promotion de la santé info santé ( ) relaxation dirigée ( ) cuisine santé ( ) prévention des chutes ( ) tableau : activités recommandées en centre de jour pour les divers sous-programmes (acaq, ) et rangs de priorité établis par le groupe d’experts sous-programmes activités incapacités d’origine motrice incapacités d’origine sensorielle incapacités d’origine cognitive facteurs socio- environnementaux santé physique santé mentale exercices physiques classes d’exercices : régulière , groupe d’ambula- tion, groupe de préhension rang rang : moyen de valorisation pour cette clientèle classe d’exercices régulière rang rang classe d’exercices régulière rang rang groupes spécifiques groupe d’activités pour : hémiplégie, sclérose en plaques, arthrite, parkinson rang groupe de soutien exercices pour les yeux stratégies de communication : discrimination par le toucher, les odeurs, stratégie d’écoute, lecture labiale, exercices de mémoire et de concentration rang groupe spécifique pour certaines pathologies : diabète rang groupe de prévention en santé mentale rang / activités fonctionnelles groupe de tâches : menuiserie, horticulture, artisanat, cuisine, enseignement et entraînement avq rang rang / groupe de tâches : cuisine, artisanat adapté, tâches domestiques (ex. : préparer les serviettes de table). intégrer avq dans la routine au cj : se vêtir et se dévêtir, utiliser la toilette, etc. rang rang rang / rang stimulation cognitive gymnastique des fonctions cérébrales : réminiscence, orientation à la réalité, stimulation sensorielle rang activités musicales ou de réminiscence rang dans le cadre, inclus avec stimulation cognitive et avec groupe psychosocial rang rang rang sports et jeux physiques mentionné au rang comme exercices physiques mentionné au rang comme exercices physiques mentionné au rang comme intégration sociale sous-programmes activités incapacités d’origine motrice incapacités d’origine sensorielle incapacités d’origine cognitive facteurs socio- environnementaux santé physique santé mentale intégration sociale groupe psychosocial : remotivation, deuil, estime de soi, vivre avec un handicap (groupe de soutien), information sur services communautaires rang groupe psychosocial : vivre avec un handicap visuel, vivre avec un handicap auditif, information sur ressources disponibles rang groupe de valorisation et de socialisation (peut inclure jeux, zoothérapie, musique, etc.) rang fournir encadrement dans les activités groupes psychosociaux : échanges sur des préoccupations courantes (vieillissement, stress, testament), socialisation (jeux, chants, excursions), groupe de préparation à l’hébergement, groupe de réinsertion sociale rang groupe psychosocial : adaptation au vieillissement, relaxation, information sur services communautaires rang / groupe psychosocial : prévention des situations potentielles de détresse, revalorisation du rôle social et estime de soi, groupe d’entraide à la suite d’un deuil, groupe relié aux problèmes de consommation d’alcool ou de médicaments rang prévention et promotion de la santé groupe d’information santé : tension artérielle, médicaments, hygiène des pieds, alimentation rang rang / rang groupe d’information santé : nutrition, médication, sécurité, vie saine, information sur certaines pathologies rang groupe d’information santé : relaxation, médication rang / soutien au réseau d’aide avec aidant : suivi du programme d’exercice à domicile rang avec aidant : suivi des stratégies de communication rang avec aidant : enseignement et soutien rang rencontre avec aidant rang avec aidant : enseigne- ment (insuline, dosette) rang avec aidant : enseignement et soutien rang tableau : activités au centre de jour pour l’ensemble des participants, puis pour les quatre profils de participants (pourcentage d‘individus qui ont bénéficié de chaque type d’activités, puis moyenne de l’intensité de l’exposition pour ceux qui en ont bénéficié) activités au cj pour les participants groupe : personnes fragiles (n= ) groupe ; utilisateurs précoces (n= ) groupe : incapacités d’origine cognitive (n= ) groupe : incapacités d’origine motrice (n= ) anova a. exercices physiques % % ± % % , ± , % , ± , % , ± , % , ± , , * , * b. groupe spécifique % % ± % % , ± , % , ± , % , ± , % , ± , , * , * c. activités fonctionnelles % % ± % % , ± , % , ± , % , ± , % , ± , , * , d. stimulation cognitive % % ± % % , ± , % , ± , % , ± , % , ± , , , * e. activités musicales ou de réminiscence % % ± % % , ± , % , ± , % , ± , % , ± , , , f. sports et jeux physiques % % ± % % , ± , % , ± , % , ± , % , ± , , , * g. intégration sociale Évènements spéciaux % % ± % % % ± % % , ± , % , ± , % , ± , % , ± , % , ± , % , ± , % , ± , % , ± , , , , * , h. prévention et promotion santé % % ± % % , ± , % , ± , % , ± , % , ± , , , journées pour troubles cognitifs % % % % % , * nombre de catégories d’activités , ± , , , , , , * ce résultat signifie que, par exemple, ceux qui ont participé à des exercices physiques y ont participé en moyenne à % de leurs présences au cj tableau : correspondance entre l’exposition aux diverses activités pour les membres du groupe (personnes fragiles ; n= ) et les activités recommandées activités recommandation pour incapacités d’origine sensorielles recommandation pour santé physique recommandation pour santé mentale personnes du groupe qui ont bénéficié d’activités de cette catégorie (pourcentage) pour ceux qui ont bénéficié des activités de la catégorie, intensité relative d’exposition (moyenne et écart-type) g. intégration sociale rang rang / rang % , ±±±± , h. prévention et promotion de la santé b. groupes spécifiques rang / rang rang rang rang / rang / % % , ± , , ± , c. activités fonctionnelles rang / rang / rang % , ± , e. activités musicales ou de réminiscence rang rang % , ± , a. exercices physiques f. sports et jeux physiques rang rang rang % % , ±±±± , , ± , i. soutien au réseau d’aide rang rang rang n/d n/d n/d : données non disponibles tableau : correspondance entre l’exposition aux diverses activités pour les membres du groupe (incapacités d’origine cognitive ; n= ) et les activités recommandées activités recommandation pour incapacités d’origine cognitive personnes du groupe qui ont bénéficié d’activités de cette catégorie (pourcentage) pour ceux qui ont bénéficié des activités de la catégorie, intensité relative d’exposition (moyenne et écart-type) d. stimulation cognitive rang % , ±±±± , e. activités musicales ou de réminiscence rang % , ± , c. activités fonctionnelles rang % , ± , i. soutien au réseau d’aide rang n/d n/d g. intégration sociale f. sports et jeux physiques rang % % , ±±±± , , ± , a. exercices physiques rang % , ±±±± , n/d : données non disponibles tableau : correspondance entre l’exposition aux diverses activités pour les membres du groupe (incapacités d’origine motrice, n= ) et les activités recommandées activités recommandation pour incapacités d’origine motrice personnes du groupe qui ont bénéficié d’activités de cette catégorie (pourcentage) pour ceux qui ont bénéficié des activités de la catégorie, intensité relative d’exposition (moyenne et écart-type) a. exercices physiques f. sports et jeux physiques b. groupes spécifiques rang rang % % % , ±±±± , , ±±±± , , ± , g. intégration sociale rang % , ±±±± , c. activités fonctionnelles rang % , ± , h. prévention et promotion de la santé rang % , ± , i. soutien au réseau d’aide rang n/d n/d n/d : données non disponibles références agence de la santé et des services sociaux de montréal. 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( ). evaluation of geriatric day care units: effects on patients and caregivers. journal of gerontology, serie b: psychological sciences and social sciences, ( ), - . zarit, s. h., stephens, m. a., townsend, a., & greene, r. ( ). stress reduction for family caregivers: effects of adult day care use. journals of gerontology, serie b: psychological sciences and social sciences, , s - . zarit, s. h., stephens, m. a. p., townsend, a., greene, r., & leitsch, s. a. ( ). patterns of adult day service use by family caregivers: a comparison of brief versus sustained use. family relations: interdisciplinary journal of applied family studies, ( ), - . article determinants of adult day center attendance among older adults with functional limitations jacinthe savard , nicole leduc , paule lebel , françois béland , howard bergman , , groupe de recherche solidage, facultés de médecine, université de montréal et université mcgill clinique universitaire interprofessionnelle de réadaptation, université d'ottawa groupe de recherche interdisciplinaire en santé (gris), faculté de médecine, université de montréal centre d’expertise sur la santé des personnes âgées et des aidants (cespa), institut universitaire de gériatrie de montréal division of geriatric medicine, mcgill university, and jewish general hospital, montréal submitted to the journal of aging and health: / / author’s note the first author was supported during the present study through doctoral awards, first from the alzheimer society of canada and later from the solidage research group (funded by the canadian institute of health research - cihr). the study used data collected during the system of integrated care for older persons (sipa) project, funded by the health transition funds of health canada, the canadian health services research foundation, and the ministry of health and social services of the province of quebec. the authors wish to thank luc dallaire and john fletcher, research coordinators with the sipa project, for their helpful cooperation during data analysis, and mary egan for her helpful comments on the manuscript. abstract objective: to examine factors related to regularity of adult day center (adc) attendance among seniors with functional limitations. methods: using data collected as part of a larger study, we identified the proportion of scheduled days attended among adc users in montréal and identified determinants of this attendance. results: more regular attendance was associated with: previous profession of adc participant or spouse in a sector other than health care, receiving formal help for adl or iadl on days of expected adc participation, participating for the whole day rather than half a day, lower participation in prevention and health promotion activities, and lower caregiver burden among persons with cognitive impairments and higher caregiver burden among persons without cognitive impairments. discussion: to enhance adc intervention effects, levels of participation should be maximized. study findings suggest ways to promote more regular attendance. key words: adult day center, adult day services, frail seniors, community long-term care, utilization of services introduction most industrialized countries have developed a range of geriatric services aimed at promoting autonomy and quality of life among vulnerable members of their aging populations. among these services, are adult day centers (adc), programs offered to older, community-dwelling individuals with functional limitations. at these centers, interventions include health monitoring, health education, rehabilitation activities oriented towards the maintenance of functional capacities, psychosocial interventions and leisure activities, primarily provided through group activities, as well as respite and support to families (dabelko & zimmerman, ; gutman, milstein, killam, lewis, & hollander, ; regroupement des centres d'hébergement et de soins de longue durée de la région de montréal, ). studies focusing on the effectiveness of adcs to reduce or delay the institutionalization of participants or to reduce caregiver burden have showed variable results. in several studies, even when this service is accessible, the participation rates are low (baumgarten, lebel, laprise, leclerc, & quinn, ; douglass & visconti, ; lawton, brody, & saperstein, ; montgomery & borgotta, ). however, a minimum amount of adc exposure would seem to be necessary to ensure beneficial effects (zarit, stephens, townsend, & greene, ). a number of studies that included only individuals with a specified minimum attendance showed a reduction of caregiver burden or stress (baumgarten et al., ; gaugler, jarrot, zarit, stephens, townsend & greene, ; schacke et zank, ; zarit et al., ), and stabilization or improvement of participants cognitive status (zank et schacke, ). in such a context, it is important to question the determinants of regularity of adc use to better target potential users or better adapt services to support attendance among present users. the determinants of adc use can be studied in a variety of ways. distinguishing adc users from non-users allows for the identification of persons most likely to accept this type of service. determining the characteristics of those who present higher adc use from those who frequently miss sessions or quit prematurely would allow the identification of factors important to regular participation, and help service providers enhance use among those who may benefit from this service. studies of factors that distinguish adc users from non-users include an american study of individuals of years and older. among this group, adc users (with or without home care services) were generally younger and presented with more cognitive deficits than individuals who used home care without adc. although the functional capacities of the two groups, as reflected in adl and iadl scores, were similar, those who used only home care were hospitalized more often and used more medical equipment or assistive devices (dabelko & balaswamy, ). in our previous study of individuals years and older, the probability of adc use was higher among those who were younger; did not have a university degree; received help for daily life activities from home care services more than once a week; or were in an area where adc fees were lower. for men only, history of stroke and greater functional impairment were associated with adc use (savard, leduc, lebel, béland, & bergman, ). intensity of adc use has been defined in a number of ways in studies designed to identify factors associated with higher use: number of attendances over a -month period (baumgarten et al., ; lawton brody, & saperstein, ; montgomery, kosloski, & borgotta, - ) or a -month period (lynch, harrington, & newcomer, ), number of attendances between admission and discharge (wallace, ), average number of attendances per week during months (henry & capitman, ), maintenance of participation during at least months (henry & captiman, ) or at least a year (zarit, stephens, townsend, greene, & leitsch, ). the following factors have been associated with higher intensity of adc use: male gender (wallace, ; baumgarten et al., ), higher adl needs (baumgarten et al., ; lynch et al., ), slightly higher depression scores and slightly lower anxiety scores (baumgarten et al., ), presence of cognitive deficits (baumgarten et al., ; lynch et al., ; montgomery et al., - ), fewer behavioral problems (lawton et al., ; zarit et al., ), the presence of a spouse caregiver, higher caregiver subjective burden (baumgarten et al., ), being registered for days a week, and for men only, having a spouse and children (wallace, ). in addition, programs which focused on respite or on stimulation and growth activities were attended with greater regularity than those that focused on health activities (henry & capitman, ). with the exception of baumgarten et al., these results are derived from american studies. the dynamics of adc use observed in the united states may differ in canada or québec. in fact, there are a variety of models of adc in the united states: social model, medical model, mixed models, specific dementia day centers. in québec and elsewhere in canada, adcs are rather generic, which means that they accept a varied clientele and adapt their activities to the diverse needs of this clientele. most adcs offer what are usually considered health services (nursing follow-up of health status, rehabilitation activities) as well as services of a more social nature (socialization activities for persons isolated due to a significant loss of autonomy, respite for caregivers). the majority of activities are offered in the form of group activities and most of the participants receive more than one type of service. in addition, in the united states, many of these services are offered privately; participation is sometimes limited by individual financial resources. in québec, adcs are subsidized by the ministry of health and social services. here participation is limited by the intake capacity of the centers, although individuals may be charged for transportation and meals (fees generally inferior to the costs of the adc in the united states) and these charges may restrict participation. due to differences between the two contexts, a separate consideration of factors that influence the intensity of adc use in a canadian context is warranted. research on adc use have generally relied on the behavioral model elaborated by andersen in and subsequently revisited (andersen, ) to investigate factors affecting utilization. this model allows an interesting global conceptualization of three types of factors that can explain the utilization of health services: predisposing characteristics, enabling factors and need factors. however, research stemming from this model has focused on individual characteristics of potential services users to explain services use (kosloski, montgomery & youngbauer, ). yeatts and colleagues (yeatts, crow & folts, ) emphasize the importance of studying factors that can be altered by service providers to increase service use, including: knowledge of services and procedures to access the services, access to transportation, affordability and availability of services, as well as attractiveness of services offered. in addition, in the québec context where adc enrollment is rarely initiated by the person himself or herself, but more often originates with the recommendation of a clsc (centre local de services communautaires) health professional, it seemed relevant to include aspects of the clsc services in the potential factors explaining adc use. thus, following kosloski et al. ( ), the conceptual framework used in this study includes predisposing characteristics and need factors from the typology described by andersen, as well as aspects of service delivery, inspired by the works of yeatts et al. ( ). we also included factors specific to the québec context (see figure ). when planning services for frail older persons, the needs of the informal caregiver must also be considered (bass & noelker, ; douglass & visconti, ; ducharme, lebel, & bergman, ) and are included in this conceptual framework. in the presence of subsidized services, enabling factors such as revenue and individual insurance coverage lose their relevance, and were omitted from the model. insert figure around here predisposing characteristics are factors that are present before the need for services occurs. they influence the tendency to use formal services, but also the health status of the individual, and therefore may be related to the need for services. need factors are linked with the health status of the senior individual and the characteristics of his or her caregiver. aspects of service delivery included in the model are factors which can facilitate or limit access to services. we hypothesized that these factors would interact with predisposing characteristics and need factors to modify regularity of attendance. for example, it is possible that given equal need, individuals participating in activities that are well-suited to their conditions would have more regular program attendance. the objective of the present study was to identify factors associated with the regularity of adc attendance. due to limited availability of adc spaces, planned frequency of weekly attendance is determined both by the participants’ desires and the participants’ need for attendance as evaluated by the adc team. thus, in this study we examined regularity of attendance in terms of actual days attended as a proportion of scheduled days, rather than as the absolute number of attendances over the study period. methods this study used data collected as part of a larger study, the services intégrés pour personnes agées (system of integrated care for older persons; sipa), a demonstration project undertaken to evaluate a model of integrated services for frail seniors (béland et al., a; b). the project took place from june to march and recruited study participants through two clscs in montréal. about half of these seniors were randomized to receive integrated care, while the others continued to receive standard care from their clsc. data collection for the sipa project included three waves of questionnaires to the sipa participants, one questionnaire to the participants’ primary caregiver in year , and monitoring of health services utilization throughout the sipa project. study population participants to the sipa project met the following criteria: they were aged or over, were living at home at the beginning of the study, were able to speak french or english or had a relative or close friend who could communicate with health care professionals and research personal in french or english. in addition, they presented with functional limitations as demonstrated by a score of – or less on the functional autonomy measurement system (hébert, carrier, & bilodeau, ). for this study of adc attendance, data from individuals still followed by the sipa team in were examined. of these individuals, persons attended an adc during a -month observation period. thirty-nine of these individuals were excluded from the analyses ( with numerous missing data, who did not identify a caregiver, whose caregiver did not complete the questionnaire). the final sample therefore included adc participants. comparison between included and excluded individuals on the socio- demographic variables listed in table revealed only one statistically significant difference (p<. ): the caregiver is the spouse of % of the included individuals and of only % of the excluded individuals. data collection data related to the characteristics of the older individuals and their caregivers were obtained from questionnaires administered by interview between may and november as part of the sipa project. for the retained adc participants, % of the interviews were completed by a proxy, as the individual was unable to answer because of frailty, cognitive impairment, or language barrier. in another . % of the sample, the participant was helped by a relative or a friend to answer the questionnaire. in addition, the health services utilization of participants was monitored by the sipa research team through examination of the relevant agency databases (régie de l’assurance-maladie du québec, agence de la santé et des services sociaux (asss) de montréal, clscs, hospitals, adcs, etc.). these databases included information on the use of home care services (dates and types of services), adc attendance (dates and types of activities), hospitalization (dates and length of stay), and institutional placement (dates). observation period data on adc attendance over months, months prior to and months after the participant interview, were examined. this period was chosen to take two important factors into account. since this study was considering the links between the characteristics of the individuals and their adc attendance and because the health characteristics of older persons are likely to change quickly, a short observation period was required. it nevertheless had to be sufficiently long to capture a representative sample of attendance taking into consideration expected absences due to hospitalizations, the use of institutional respite or other such events. for the individuals who enrolled in an adc during the observation period, a minimum of weeks of observation was sought. for three individuals, this meant extending the observation period beyond three months after the interview date. measurements the dependent variable, the regularity of adc attendance, was calculated as the actual attendances divided by the expected attendances given the frequency with which the individual was scheduled to attend the adc, corrected for adc closure, hospitalizations and days in overnight respite care. the independent variables considered in this study are presented according to the categories of the conceptual model: predisposing factors, needs factors of the senior person and of his or her caregiver and aspects of services delivery pertaining to services received from the clsc and from the adc (figure ). predisposing characteristics sociodemographic information considered included age, gender, education, whether the elderly person or his or her spouse had worked in the health care sector, and cultural background as measured by the country of birth and language spoken at home and with health professionals. the level of education is analyzed on a -level scale. the language spoken is presented on a -level scale for descriptive purpose, but analyzed as dichotomous variable (knowledge of at least one of the two canadian official languages). religion was recorded for descriptive purpose only as it was highly correlated to country of birth and language spoken. for social network information, living situation and the relationship with the caregiver were grouped together in a combined variable with three categories: spouse caregiver, other co-resident caregiver, and non co-resident caregiver. the presence of a previous episode of participation in an adc was also considered as predisposing factors. we hypothesed that this variable could indicate a lesser inclination to use an adc, since an earlier episode ended in resignation of participation, which is often the result of irregular participation. need factors health and functional status of participants to evaluate their health status, respondents were asked if they had any of the conditions included in the epese study (cornoni-huntley, brook, ostfeld, taylor, & wallace, ). of these conditions, related to their physical health, one to their mental health and one to memory problems specifically. the first physical health score used in the present study is the number of health problems among of these conditions (listed in table ). the th condition, history of stroke, was analyzed separately. to complete the assessment of the physical health of the participants, the number of days of hospitalization during the observation period was recorded. the mental health of the participant was measured using a question taken from the epese study that asks if the person suffers from emotional problems (nervousness, depression, anxiety or insomnia). cognitive impairment was assessed with the short portable mental status questionnaire (spmsq) (pfeiffer, ). this questionnaire includes questions which mainly evaluate memory and orientation. pfeiffer ( ) suggests that a score of or more errors is indicative of possible cognitive impairment for persons with at least some high school education. he suggests allowing one additional error for persons with less than high school education and one less error for those with college or university education, as well as an additional error for african-americans. pfeiffer’s recommendations were used to classify subjects as cognitively impaired or not, adapting the correction for ethnicity to the multiethnic context of the city of montréal, allowing one additional error for subjects who were not born in canada. while using the criteria suggested by pfeiffer, foreman ( ) has obtained a coefficient of prediction of a positive test of , . for persons unable to communicate with the interviewer because of high level of impairment or lack of french or english knowledge, the presence of cognitive deficits was recorded if the questionnaire indicated that a proxy responded because of the participant’s cognitive deficits, or on the epese question on memory, the proxy indicated that a physician had reported that the person suffers from alzheimer disease or memory problems. functional capacity was measured using the section on personal care from the older american resources and services (oars) (fillenbaum, ). this scale includes items evaluating the capacity to complete various activities of daily living - adl (to wash, get dressed, eat, etc.) and items evaluating the capacity to complete various instrumental activities of daily living - iadl (to use the telephone, use means of transportation, prepare meals, etc.). scores can range from to , a higher score indicating higher independence. presence of sensory problems was evaluated by asking respondents if they had no difficulty, some difficulty or a lot of difficulty recognizing people, reading, or hearing, even when using appropriate technical aids (glasses, hearing aid). similarly, presence of communication problems was evaluated by asking respondents if they had no difficulty, some difficulty or a lot of difficulty being understood when they speak. for the multivariate analyses, dichotomous scores were created with sensory problems indicating a lot of difficulty in at least one of the three sensory activities, and communication problem indicating a lot of difficulty when speaking. placement in a long term care facility in the months following the questionnaire can indicate deterioration in functional capacity or a decrease in the capacity of the social network to compensate the disabilities. this information was collected from the database on placement of the montréal asss. caregivers need three types of variables were selected as indicative of caregivers need for respite. they included caregiver sociodemographic indicators such as age and gender, functional capacity, and variables related to the caregiving role such as length of time in caregiving and subjective burden. caregivers functional capacity was measured with the section on personal care from older american resources and services (oars) (fillenbaum, ), as described above. length of time in caregiving was recorded in years. subjective burden of the caregiver was measured with the -item burden interview (hébert, bravo, & girouard, ; zarit, orr, & zarit, ). aspects of service delivery three characteristics pertaining to the services received from the clsc were considered. the first was frequency of assistance received from the clsc for adl and iadl activities. the second considered whether assistance was received on the days of scheduled attendance to the adc. in fact, the two clscs offered some individuals assistance preparing for acd attendance (hygiene, dressing, etc.) to lessen strain on the caregiver. this assistance could favor adc participation. crosschecking data on the adc attendance and data on the services received from the clsc allowed us to determine if the participant had received assistance for adl or iadl on the days of scheduled adc attendance. preparation assistance was considered present if it was observed on a regular basis for at least one of the adc scheduled day each week. finally, a variable reflecting type of service received from the clsc was used to denote whether the participant was receiving standard service or integrated service within the sipa project. this was done since integrated service, with more personalized case management, may have influenced adc attendance. regarding the characteristics of the services received from adc, the following variables were considered: which adc was attended, the duration and the frequency of scheduled visits, and type of group activities offered. the adc attended represented a variety of organizational characteristics that were identical for every participant attending the same center. the other three variables presented individual variations for participants of the same adcs. the duration of scheduled visits was considered as a continuous and a dichotomous variable (half-day ( . hours or less) or entire day (more than . hours)). the frequency of registration was considered on a continuous scale (number of days per week). when the frequency changed during the observation period, the frequency was prorated. the classification of the group activities of the adc established in a previous study (savard, lebel, leduc, béland, & bergman, submitted; see summary in table ) was used to determine first, on a dichotomous scale, whether an individual participated in this type of activity, and then to establish on a continuous scale, the intensity of participation in this type of activity (percentage of adc attendances in which the person participated in this type of activity). (insert table around here) participating adult day centers five adcs served the study region. their characteristics are described in more detail elsewhere (savard et al., ) and are summarized below. the number of persons registered varied from to per day. the average number of attendances per day varied from . to . . this corresponds to an attendance rate of to % (mean of %) for the adcs that provided this information. participants may be registered between ½ to days a week, according to evaluated needs and the policies of the centre. exceptionally, one person was registered for days a week. the duration of each attendance varied from . to hours a day, for persons registered for the whole day; and from to . hours for those registered for a half-day. the cost of each attendance varied from $ to $ a day (mean $ ), to cover transportation and meal expenses. all the centers mentioned that their fees could be adjusted to accommodate people who request this due to financial difficulties. two centers phoned all participants prior to their scheduled attendance to remind them of their expected participation. one center carried out such phone calls only for special cases such as for persons with memory problems who live alone. these adcs employed . to . full-time equivalent (fte) staff, for mean ratios of . registered participants per fte, and . real adc presences per fte. personnel generally included, in addition to administrative and support personnel (coordinator, secretary, driver), the following care staff: nurses, occupational therapists, physiotherapists or physical rehabilitation therapists (a special category of college-trained personnel available in québec), recreation technicians, social workers, and support workers. all of the programs endeavored to support older adults with functional limitations remain in non institutional settings. two centers accepted persons of years and older, two accepted those at least years, while the remaining center specified that they were a geriatric center but did not exclude clients based on a minimum age. each center hosted persons with cognitive difficulties on particular days or in specific groups, which ran parallel to other groups and included activities adapted for individuals with cognitive deficits. analysis descriptive statistics were computed first for each of the variables, followed by bivariate analysis of the relationship between each independent variables and adc attendance. to better understand the influence of the different variables on adc attendance, multiple regression analyses were performed. before performing the regression analysis, continuous variables were tested for linearity of their relationship to adc attendance. as suggested by hosmer and lemeshow ( ), variables which demonstrated a relationship with adc attendance at the p ≤ . level in the bivariate analyses were considered for entry in the regression analyses, as it is possible that variables weakly associated with the outcome at the bivariate level may become important predictors when considered together. variables that have demonstrated important associations with adc attendance in previous studies were also entered into the regression analysis. they include age, gender, relationship with caregiver, functional capacity, presence of emotional problems and cognitive deficits, caregiver burden, and frequency of scheduled attendance. variables were tested in three steps in the regression analyses. according to the conceptual model, predisposing characteristics variables were first entered in the model, followed by needs factors, and in the final step aspects of service delivery. at each step, variables were retained if they reached the threshold of p≤ . in the presence of the variables already in the model, or if they were identified in previous studies as associated with adc attendance. after each step, the possible interactions between each of the retained variables were introduced into the model. the interaction terms were kept in the model if they maintained a significance threshold of p≤ . in the presence of the other variables and if they did not cause colinearity problems (vif< ). after these steps were completed, the variables that did not reach the significance threshold of p≤ . were withdrawn from the model. the quality of the final model was evaluated using residual diagnostic procedures. all analyses were conducted with spss software for windows, version . results description of the sample main characteristics of adc participants and their caregivers are reported in tables and . mean age for the sample was . (± . ). as expected among this age group, participants were mostly women ( . %) and a high proportion was widowed ( . %). reflecting the high multiethnic composition of the areas of the city where the study took place, . % of the participants were born in canada and . % elsewhere. the immigrants had lived in canada for many years (average of . ± . years) and only . % have been in canada years or less. among the . to . % who were not using one of the two canadian official languages at home, only to % did not seem to have a sufficient knowledge of french or english to use these languages with health professionals. there were . % of the subjects who were married and the spouse was the caregiver for . % of the married people or . % of the total sample. children (daughters and sons) were the main caregivers for . % of the subjects, and two-thirds of these did not live with the care recipient. (insert table around here) participants had on average . (± . ) health problems among the list of conditions presented. in addition, . % had experienced a stroke, . % relate having emotional problems, and . % presented with cognitive impairments. finally, functional capacity scores indicated a variety of independence levels (range - ). the caregivers were primarily women ( . %) whose functional capacities were generally intact. approximately % of the caregivers felt moderate or severe burden. (insert table around here) with regards to services, we observed that just over half of the participants received assistance from the clsc for adl and iadl at least once per week (table ). almost % regularly received assistance on adc attendance days. (insert table around here) adc attendance the absolute number of attendances varied, of course, according to the frequency of scheduled registation (table ). participants in this study were scheduled to attend an average of . (± . ) times a week (range from time/two weeks to times/week, median time/week). they were registered to attend the adc for an average of (± ) weeks during the observation period of weeks. shorter periods of registration were attributable to the individuals who joined the adc after the beginning of the observation period and the individuals who discontinued attendance during this time. participants had an average of (± ) attendances to the adc during the observation period. the range was to attendances. (insert table around here) on average, the participants attended the adc for . % ( % confidence interval: to %) of the scheduled visits, with % of the subjects attending over . % of the scheduled visits. the participants with the lowest proportion of scheduled attendance had only one attendance (representing % of the days registered), while individuals demonstrated % attendance. factors influencing adc attendance in bivariate analysis of associations between the independent variables and adc attendance, the following were associated with higher adc attendance (p< . ): at least some high school but no university education, participant or spouse had not worked in health care, help from the clsc for adl or iadl activities once a week or more, help from the clsc on adc scheduled days, higher number of days per week registered at the adc, lower proportion of prevention and health promotion activities during adc visits. in the first step of the regression analysis, predisposing characteristics significant at the p< . level in bivariate analysis (gender, education, profession) were entered in the model along with age and relationship with caregiver, variables deemed important, as they relate to adc use in previous studies. in the following step, need variables significant at the p< . level in bivariate analysis (older individuals number of health problems, presence of cognitive impairment, presence of important sensory problems and functional capacity, as well as caregivers functional capacity and subjective burden) were entered in the model, along with a history of stroke and presence of emotional problems, variables deemed important from previous studies. in the last step, six service delivery factors significant at the p< . level when tested individually were entered in the model. these included: help received from the clsc for adl or iadl activities, frequency of adc registration, registration for half day or full day, proportion of the adc visits that included cognitive stimulation, prevention and health promotion activities, and special events. help received from the clsc for adl or iadl activities was tested in two forms separately (frequency of services and receipt of service on scheduled adc attendance day) as these two variables are highly correlated (spearman rho = . , p<. ). after all these steps, the variables that did not reach the significance threshold of p< . were withdrawn one by one from the model to produce the final model (table ). six variables were identified as predictors of adc attendance: one predisposing characteristic, two need factors and three service delivery factors. among the predisposing characteristics, results indicate attendance was lower among participants who had been or were married to health care workers. among the need factors, presence of cognitive impairments was a predictor of higher attendance when caregiver burden was low, but an indicator of lower attendance when the burden was high. as well, caregiver burden was a predictor of higher attendance for individuals without cognitive impairments. among service delivery factors, receiving help the day of expected adc day and participating for the whole day rather than half day were identified as predictors of higher attendance. finally, greater participation in prevention and health promotion activities was an indicator of lower attendance. the model explained . % of the observed variance. (insert table around here) residual analysis showed residual variance to be smaller for higher values of predicted adc attendance. this variation may be explained by a ceiling effect. as the dependant variable is a proportion, observed and expected adc attendance cannot be higher than one, limiting the possibility of large positive residuals at this end of the scale. five cases were found with a cook’s distance higher than . but smaller than . . such potential outliers can influence the model. among these cases, three had higher observed attendance than what is predicted by the model, and the remaining two had lower observed attendance. examination of the data revealed that these cases had observed values for all independent variables that were possible values, so these cases were kept in the analysis. discussion the objective of the present study was to identify factors associated with the regularity of adc attendance. among the various ways of measuring adc use, this study focused on the more voluntary component of attendance. attendance was defined as observed attendances compared to scheduled attendances excluding days of hospitalization, days in respite beds and holidays when the adc is closed. the mean attendance rate of , % for the sample is close to the % mean attendance rate for all clients of the participating adcs (as reported by the adc managers), thus increasing the confidence in the possible generalization of study results to other samples of similar populations. attendance rates have important programming implications for programs with waiting lists. programs with attendance rates similar to those seen in this study would be able to enroll to % more participants over estimated capacity before daily attendance would exceed capacity. when looking at these results, one must keep in mind that they describe a group composed of % of established users, that is, users registered with the adc for at least three months prior to the beginning of the study period. a different result would be expected from a sample composed of people beginning to attend an adc, as drop out rates are higher in the first three to six months of registration (cox, ; dabelko, ; neufeld & strang, ; schacke & zank ; wells, jorm, jordan, & lefroy, ; zarit et al., ). as suggested by baumgarten et al. ( ), to maximize intervention effects, high levels of participation should be incorporated as an explicit adc program goal. thus factors influencing attendance must be understood and acted upon. among the determinants of attendance identified in the conceptual model, service delivery factors present a higher degree of potential mutability (kosloski et al., ; yeatts et al., ). these factors can be modified through programming and policy decisions. in general, predisposing and need factors which relate to participant or caregiver characteristics are considered less mutable, although some need factors such as caregiver burden could be influenced by provision of targeted services. factors with lower degrees of mutability still must be understood in order to program services that are sensitive to the utilization behaviors of clients with various characteristics and needs. looking first at predisposing characteristics, a somewhat surprising result is that the only factor among these that attained statistical significance was that the participant or spouse had worked in the health care sector, and that this characteristic predicted lower attendance. a possible explanation may be that previous work in the health care sector is associated with university education (odds ratio: . , % confidence interval: . - . ). in a previous study, university education was associated with a lower probability of adc use (savard et al., ). in this study, university educated individuals seemed to have slightly lower adc attendance, but the difference was not statistically significant. however, this may be due to a small sample size and in particular to the small number of university educated participants. it can be hypothesized that as university educated persons are less common in the present cohort of individuals of years and over, and as adc activities (mainly group activities) are designed to the needs of the majority, activities may be less well adapted for persons with higher education. this potential explanatory variable requires further investigation, first to confirm if individuals who have higher education and/or who have worked in health care have different experiences of adc participation, and then to examine possible service adaptations to better meet the needs of these individuals. with regards to need factors, presence of cognitive impairments and higher caregiver burden were important predictors of attendance. this is consistent with findings from other studies (baumgarten et al., ; montgomery et al., - ). however, the present study went a step further in testing interaction and found that presence of cognitive impairments interacts with caregiver burden to predict adc attendance. to our knowledge this is the first time this interaction has been formally identified. however, this result is consistent with reports from qualitative studies about caregivers feeling that preparing a relative with dementia for day care is exhausting and sometimes more work than keeping the person at home (graham, ; lawton et al., ), and that some persons with dementia are reluctant to attend the adc (beisecker, wright, chrisman, & ashworth, ; cotrell, ), making it even more difficult for caregivers with an already high level of burden to take on the extra work of convincing the cognitively impaired person to attend an adc. this may also explains why wells et al. ( ) found that high levels of caregiver distress at initiation of services is predictive of discontinuation of day care attendance among individuals with dementia. contrary to the previous finding from wallace ( ), in this study, gender was not an indicator of attendance when other factors are controlled. unfortunately, the data available for this study did not permit testing of some predictors identified in previous research including, scores on scales for depression, anxiety, or behavioral problems. we did examine the relationship between a positive response to a general question regarding depression, anxiety and sleeping difficulties, but found no relationships. this is not surprising as these different emotional problems may influence adc attendance in diverging ways. baumgarten et al. ( ) found that depression was associated with higher adc attendance and anxiety with lower attendance. three service delivery factors included in the present study influenced adc attendance. as expected, receiving home services for adl or iadl activities from the clsc on expected adc days was associated with higher attendance. although the available data did not allow differentiation between services received expressly to help the person prepare for the adc and other kinds of help (for example, help received later during the day), knowing that the participating clscs offered services to prepare individuals for adc attendance allows us to assume that much of the clsc help recorded was of this type. this relationship may be the result of a confounding variable not included in the study. for example, it is possible that clscs offer this kind of help to persons demonstrating high motivation for adc participation. however, because of scarcity of resources, this help is most probably offered only to persons living alone or to caregivers experiencing increased burden assisting individuals to prepare to attend the adc. if this is the case, it may represent an efficient use of resources to prevent adc irregular attendance or termination, and in this way to provide effective respite to the caregivers. participating for the whole day rather than half day was also a predictor of higher attendance. considering the burden of preparing for adc activities either for caregivers or for older individuals themselves, a full day of participation may be necessary for perceived benefits of participation to exceed this burden. finally, a higher participation rate in prevention and health promotion activities was an indicator of lower attendance. this category includes three types of activities: didactic presentations on various health topics, guided relaxation, and healthy cooking. however, % of the persons participating in health promotion activities were offered mainly didactic activities. henry and capitman ( ) found that programs which focused on respite or on stimulation and growth activities had stronger participation than those focusing on health activities. however, they included many individual activities such as health assessment, referrals to needed care, etc. in their definition of health activities, whereas the present study included only group activities. participant may prefer to be more active, and this may explain the relationship between higher proportions of health promotion activities in their schedule and lower attendance. this assumption would need to be tested in future studies. contrary to the previous findings of wallace ( ), in this study, the number of times a person was registered to attend an adc each week was not indicative of attendance when other factors were controlled. service delivery factors represent organizational choices made by the various participating adc and the other agencies of the health and social service system that aim at helping older individuals remain in the community for as long as possible. these important variables provide useful information for quality improvement. yet, they have rarely been included in studies on the determinants of adc use. as stated by henry and capitman ( ), it seems that “details of adc programming count”. findings from this study suggest that to maximize levels of participation, programs should consider providing help to prepare participants for adc, provide health promotion activities with parsimony, and offer services of sufficient daily duration. a threshold of hours per day, that is a participation including lunch, seemed to positively influence attendance. because of the limited sample size and the limited number of adcs represented in this study, findings would need to be confirmed in future studies. unfortunately, some service delivery factors included in previous studies could not be considered in the present study, limiting comparison with their results. since transportation and meals were offered by all the participating adcs, we could not consider the effects of the presence or absence of these factors. in addition, a number of potentially important variables were unavailable including reason for referrals, and number and type of individual services received. finally, variation in a number of other variables was completely attributable to the specific adc program. these included whether participants were provided with reminder phone calls, cost of the adc, and structure of the adc personnel. thus, the influence of each of these precise variables could not be tested. inclusion of the adc attended in the regression analysis did not demonstrate any relationship with regularity of attendance. strengths and limitations of the study most previous studies of adc were conducted during the ’s (general participants) and the ’s (participants with dementia). today, adcs are widely available as a service to support aging in place. these early studies have had substantial influence on present day provision of services. for example, transportation difficulties were identified in previous studies as an important barrier to adc use, and many adcs now provide this service. current studies are however needed to determine how well present programs respond to current needs. this study on the determinants of regularity of adc attendance in a canadian context provides such information. an important strength of this study on adc attendance is the inclusion of service delivery factors representing organizational choices made by adcs that have not been extensively studied to date. it sheds light on additional factors such as the collaboration with the home support agency to help a person prepare for adc attendance. it is hoped that these results will stimulate new research on areas of high importance for adc programming and policy. nevertheless, results must be interpreted in the light of the study limitations. first, there are limitations attributable to the use of secondary data analysis. at the time this study was conducted, there was a lack of homogeneity in the data recorded by the adcs related to the health status of their participants and the characteristics of caregivers. thus, using data uniformly collected as part of a larger study on integrated services for the frail seniors has been a strategy to obtain valid data on the characteristics of the participants and their caregivers, as well as data on their adc presences. however, the sample is not completely representative of the entire adc population in canada or québec, for two main reasons. for one, it is not a random sample of all the participants of the five participating adcs. nevertheless, according to the managers of the five participating adcs, participant characteristics in this study are quite similar to those of their entire clientele. second, this sample was taken from persons from two well-delimited area of the city of montréal. population from the two clsc catchment areas from which the participants were recruited is more multiethnic than that of the whole city of montréal ( to % of immigrants versus % for the entire city) (asss de montréal, a, b). it is therefore a sample from a large multiethnic urban center. despite this limitation, results may be at least partially representative of the situation in montréal, as objectives and organization of the clscs and adcs are similar for the entire region. adc use and attendance may be different in rural areas as, in addition to serving populations with different characteristics, rural adcs often must adapt their programs according to transportation possibilities over a vast area. working with a secondary analysis of data has also limited the number of centers included in the study, restricting our ability to study the influence of a number of organizational factors. second, an important limit in testing the influence of the type of activities offered by the adc on attendance is the lack of a standardized classification for adc group activities. such a classification would permit more reliable comparison. finally, to include caregiver factors in the analysis restricted the sample to only those persons for whom caregiver has been identified and reached. this has reduced the sample size to participants, and persons with a spouse caregiver are slightly overrepresented in this sample as compare to the general adc population. having a spouse caregiver has been associated with higher adc attendance in a previous study (baumgarten et al., ). our data also showed a higher mean attendance rate for participants with spouse versus non-spouse caregivers, and for included participants versus individuals excluded because of lack of caregiver data. however, in both cases, these differences did not reach statistical significance. conclusion high levels of participation frequency are required to maximize adc intervention effects. findings from this study present important programming and policy implications that deserve consideration. first, although one goal of adc is to provide respite to families to alleviate the burden of caregiving, it is a challenge to offer respite to participants with cognitive difficulties and high caregiver burden. these participants tend to have lower adc attendance, and additional efforts may be needed to help them. suggestions include that such individuals may be better served through provision of help to prepare adc participants and services of sufficient duration to warrant preparation effort. second, activity programming can influence attendance, and future research with more comparable data on activities is needed. footnotes in québec, the centres locaux de services communautaires (clsc) are part of the ministry of health and social services network and exist throughout the province, although they were recently merged with other institutions (hospitals and nursing homes) to form the centres de santé et de services sociaux (csss). they are the main source of home care services for seniors. services include home nursing, social work, rehabilitation, help with personal care and instrumental activities of daily living, home respite, referrals to community agencies, and evaluation of admissibility and referrals for admission to long term care institutions. these services are free of charge and access is on the basis of evaluated need. figure : factors influencing regularity of adc attendance presdisposing characteristics of the older individual • socio-demographic variables • social network • former adc participation regularity of adc attendance needs older individual • physical health • mental health • cognitive limitation • functional capacity caregiver • age and sex of caregiver • functional capacity of caregiver • length of time as a caregiver • caregiver subjective burden aspects of service delivery clsc: • type of service received: sipa or standard • frequency of assistance from clsc • adl assistance from clsc on days attending adc adc: • organizational characteristics (operationalized with the identity of the adc attended) • frequency of services offered • duration of each adc participation • types of activities attended table : classification of adc group activities name of the category examples of activities a. physical exercises general exercises, adapted exercises (sitting), walking group, pool exercises b. specific groups designed for a physical diagnosis or a particular functional problem groups for parkinson’s disease, stroke, diabetes, arthritis, pain c. functional activities arts and crafts, cooking, horticulture, beauty, pet therapy d. cognitive stimulation cognitive stimulation, sensory stimulation e. musical or reminiscence activities music therapy, musical composition, listening to music, signing, reminiscence f. sports and physical games sandbags game, adapted curling, adapted volleyball, adapted bowling, etc. g. social integration discussions (formal), current events, community information, table games (cards, scrabble, bingo, etc.), outings, anniversary dinners, special events and concerts, computer– internet, client planning committee h. prevention and health promotion activities health information, healthy cooking, guided relaxation table : characteristics of the sample: predisposing characteristics average or % sociodemographic information age . (± . ) gender (proportion of women) . % education - none or elementary school - high school, technical or trade school - university . % . % . % participant or spouse worked in the health care field . % country of birth - canada - other . % . % religion - catholic - jewish - other (including none) . % . % . % language - french at home and with professionals - english at home and with professionals - english or french with professionals (not at home) - other language at home, language with professionals missing - other language (neither english or french) even with professionals . % . % . % . % . % social network relationship with the caregiver - spouse - other caregiver residing with participant (child) - other caregiver not residing with participant (child) . % . % ( . %) . % ( . %) previous episode of adc participation previous episode of adc participation - none - contact (one visit) - participation (more than one visit) . % . % . % these persons speak french or english at home, sometimes in addition to another language table : characteristics of the sample: need factors average or % physical health number of health problems/ . (± . ) type of health problems - cataracts - rheumatism or arthritis (joint or bone pain) - circulation problems - bladder, kidneys or prostate problems - heart disease - high blood pressure - stomach problems - diabetes - respiratory problems - tumor or cancer - recent hip or leg fracture (over the past year) - glaucoma - parkinson’s disease . % . % . % . % . % . % . % . % . % . % . % . % . % stroke . % days of hospitalization during the observation period . (± . ) mental health emotional problems (yes) . % cognitive impairment cognitive impairment . % functional capacity iadl + adl (oars score/ ) - adl (score / ) - iadl (score / ) - urinary incontinence - fecal incontinence . (± . ) . (± . ) . (± . ) . % . % presence of sensory problems - no difficulties recognizing people, reading or hearing - some difficulties in at least one of the activities - a lot of difficulties in at least one of the activities . % . % . % presence of communication problems - none - a little bit of difficulty - a lot of difficulties . % . % . % permanent placement in a long term care facility in the months following the questionnaire . % caregivers sociodemographic indicators age . (± . ) gender (proportion of women) . % caregivers functional capacities adl + adl (oars score/ ) - adl (score / ) - iadl (score / ) . (± . ) . (± . ) . (± . ) variables associated with the caregiver role length of time of caregiving . (± . ; median . ) subjective burden (result/ ) - absent to mild-moderate ( - ) - moderate-severe to severe ( - ) . (± . ) . % . % urinary or fecal incontinence, or both = . % of the sample table : aspects of service delivery services received from the clsc average or % frequency of assistance received from the clsc for adl and iadl activities - no intervention recorded - less than once per week - once per week or more . % . % . % assistance received on the days of add attendance . % type of service received from the clsc - integrated service within the sipa project - regular service . % . % characteristics of adc visits duration of scheduled visits (hours) proportion of individuals with half-day scheduled visits ( , hours or less) . ± . , % frequency of registration (days/week) . ± . activities at the adc a. physical exercises b. specific group for a physical diagnosis or a particular functional problem c. functional activities d. cognitive stimulation e. musical or reminiscence activities f. sports and physical games g. social integration special events (celebrations, shows, outings) h. prevention and health promotion activities % individuals who participated (for those with participation, intensity of participation) . % ( . ± , ) . % ( . ± , ) . % ( . ± , ) . % ( . ± , ) . % ( . ± , ) . % ( . ± , ) . % ( . ± , ) . % ( . ± , ) . % ( . ± , ) table : number of adc attendances during a period of weeks, presented by frequency of registration the shaded boxes correspond to expected observation if actual attendance matched scheduled attendance. frequency of registration once per weeks time/ week between & times / week* times/ week between & times / week* times/ week between & times / week* times/ week total actual attendance to to to to to to to to total * this represents individuals for whom the scheduled attendance changed during the observation period table : multiple linear regression of level of adc attendance on predisposing and need factors, and aspects of service delivery coefficient b ic , % for b p value predisposing characteristics participant or spouse worked in the field of health care -. 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( ). predictors of use of chronic services by impaired members in the social health maintenance organization demonstration. journal of applied gerontology, ( ), - . montgomery, r. j. v., & borgotta, e. f. ( ). the effects of alternative support strategies on family caregiving. the gerontologist, ( ), - . montgomery, r. j. v., kosloski, k., & borgotta, e. f. ( - ). the influence of cognitive impairment on service use and caregiver response. the journal of applied social sciences, ( ), - . neufeld, a., & strang, v. ( ). issues in the evaluation of small-scale adult day care programs. international journal of nursing studies, ( ), - . pfeiffer, e. ( ). a short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. journal of the american geriatrics society, ( ), - . regroupement des centres d'hébergement et de soins de longue durée de la région de montréal. ( ). cadre de référence régional pour le programme centre de jour [a regional frame of reference for the adult day center program]. montréal: regroupement des centres d'hébergement et de soins de longue durée de la région de montréal. savard, j., lebel, p., leduc, n., béland, f., & bergman, h. ( , submitted). les activités de groupe des centres de jour pour personnes âgées correspondent-elles aux besoins des différents profils de participants. [are group activities of adult day centers fit to the needs of different participants' profile]. canadian journal on aging. savard, j., leduc, n., lebel, p., béland, f., & bergman, h. ( ). l’utilisation des services de centres de jour par les personnes âgées qui présentent des incapacités [utilization of adult day care services by frail seniors]. canadian journal on aging, ( ), - . schacke, c., & zank, s. r. 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( ). stress reduction for family caregivers: effects of adult day care use. journals of gerontology, series b: psychological sciences and social sciences, , s - . zarit, s. h., stephens, m. a. p., townsend, a., greene, r., & leitsch, s. a. ( ). patterns of adult day service use by family caregivers: a comparison of brief versus sustained use. family relations: interdisciplinary journal of applied family studies, ( ), - . résultats complémentaires déterminants du contact avec le centre de jour: interaction entre le sexe et les facteurs de besoin les résultats présentés au tableau de l’article démontrent que si les hommes et les femmes utilisent le centre de jour dans des proportions semblables, ils ne l’utilisent pas de la même façon. c’est lorsqu’ils ont subi un avc et lorsqu’ils présentent plusieurs incapacités fonctionnelles que les hommes utilisent davantage le centre de jour. pour les femmes, l’utilisation ne varie pas en fonction de ces variables. les femmes semblent utiliser davantage le centre de jour lorsqu’elles sont plus autonomes. mais ces différences sont peu importantes. de plus, les hommes et les femmes plus jeunes semblent utiliser davantage le centre de jour lorsqu’ils ou elles présentent moins de problèmes de santé, alors que c’est l’inverse pour les femmes plus âgées. en complément de ce qui est présenté à l’article , il apparait intéressant de démontrer ces résultats de façon graphique avec les figures à ci-dessous. figure : interaction entre sexe et présence d’un avc , , , , , , , , , oui non présence d'un avc r a ti o s d e c o te s a ju s té s homme femmes figure : interaction entre sexe et capacités fonctionnelles , , , , , , , résultats au oars r a ti o s d e c o te s a ju s té s hommes femmes figure : interaction : âge, sexe et problèmes de santé ans ans ans Âge r a ti o s d e c o te s a ju s té s hommes, prob. femmes, prob. hommes, prob. femmes, prob. déterminants du contact avec le centre de jour: les facteurs de besoin des personnes de soutien dans l’article , l’influence des facteurs prédisposants et des facteurs de besoin des personnes de soutien sur le contact avec le centre de jour n’a pas été analysé pour ne pas diminuer la taille de l’échantillon utilisé pour les analyses multivariées. en effet, nous disposons de données complètes que pour personnes de soutien. les analyses bivariées entre les principales variables des personnes de soutien et le contact avec le centre de jour laissent toutefois supposer que certains facteurs de besoin des personnes de soutien, présentés au tableau vi ci-dessous, pourraient influencer le contact avec le centre de jour. tableau vi : régression linéaire simple entre le contact avec le centre de jour et des variables de la personne de soutien relation bivariée variable forme étendue n coefficient b signification activités de la vie quotidienne et domestique continue ( à / ) , , durée de l’aide continue ( , à ans) -, , fardeau ressenti continue ( à / ) , , ces relations, qui sont représentées graphiquement aux figures à ci-dessous, laissent entrevoir qu’une personne âgée serait plus susceptible de fréquenter un centre de jour si sa personne de soutien ne présente aucune incapacité fonctionnelle, est aidante depuis moins longtemps et présente un fardeau relativement élevé, sans être un fardeau très lourd. elles mériteraient d’être explorées dans des analyses multivariées des études futures. figure : contact avec le centre de jour et capacités fonctionnelles de la personne de soutien figure : contact avec le centre de jour et durée de l’aide par la personne de soutien figure : contact avec le centre de jour et fardeau de la personne de soutien présences réelles, régularité de la participation et types d’absence en moyenne, les utilisateurs de centre de jour de notre échantillon étaient inscrits au centre de jour à raison de , (± , ) jours par semaine et y ont effectivement été présents , fois par semaine en moyenne. cependant, la moyenne du nombre de présences par semaine est rehaussée par les forts utilisateurs. la médiane est de , présence par semaine (figure ). figure : participation au centre de jour : présences réelles par semaine nombre moyen de présences réelles par semaine , , , , , e ff e c ti f moyenne = , c ecart type = , c n = médiane : , l’exposition au centre de jour a été en moyenne de , % de ce qui était recommandé. toutefois, une partie des absences sont indépendantes de la volonté de l’individu, par exemple, lorsque le centre de jour était fermé ou alors que la personne était hospitalisée ou placée en hébergement temporaire. le tableau vii ci-dessous démontre la répartition des absences dues à ces raisons hors de la volonté de la personne et les absences pour d’autres raisons. tableau vii : répartition des absences lors des jours de centre de jour prévus minimum maximum moyenne Écart-type nombre d'absences pendant la période d'observation de semaines , , absence parce que le centre de jour est fermé , , absences pendant lesquelles la personne est hospitalisée , , absences pendant lesquelles la personne est hébergée , , absences pour raisons autres , , lorsqu’on exclut ces journées où la personne est dans l’impossibilité de fréquenter le centre de jour, le taux de participation moyen est de , % de ce qui serait attendu, alors que la médiane est de , %. ainsi, une majorité d’utilisateurs ont une participation qu’on pourrait qualifier de régulière, alors qu’ils sont présents à près des trois quarts des moments prévus et possibles. on observe par contre que près de % des participants sont présents % ou moins des jours prévus et possibles (figure ). figure : régularité de la participation en centre de jour, en pourcentage des journées prévues régularité d'utilisation du centre de jour , , , , , , e ff e c ti f moyenne = , c ecart type = , c n = régularité de participation pour divers profils de participants il est intéressant de noter les tendances observées dans la régularité de la participation en centre de jour pour divers profils de participants, même lorsque les variables de comparaison ne sont pas ressorties comme déterminants de la régularité de participation en centre de jour, car elles n’atteignent pas le seuil de signification statistique de p<, . pour comparer les résultats de divers profils de participants, rappelons que la régularité de participation moyenne pour l’ensemble de l’échantillon est de , % (± , ). médiane : , en ce qui concerne les caractéristiques des participants prises isolément, on observe que la participation des hommes semblent plus régulière que celle des femmes ( , % vs , %; p=, ). on note aussi que la moitié la moins autonome de l’échantillon semble participer plus régulièrement au centre de jour que la partie la plus autonome ( , % vs , %, p=, ). lorsqu’on s’attarde à la régularité de participation des quatre profils de participants créés par les analyses en regroupement à l’article , on observe que les différences dans les taux de régularité de participation de ces divers groupes ne sont pas statistiquement significatives, mais qu’ils démontrent une progression qu’il est pertinent de noter (voir tableau viii) et qui est cohérente avec les observations du paragraphe précédent. tableau viii : régularité de participation pour chacun des quatre groupes formés par les analyses en regroupement n moyenne Écart-type intervalle de confiance à % : personnes fragiles , , ( , - , ) : utilisateurs précoces , , ( , - , ) : incapacités majoritairement d’origine cognitive , , ( , - , ) : incapacités majoritairement d’origine motrice , , ( , - , ) rappelons que les trois premiers groupes sont composés principalement de femmes, alors que le dernier groupe est composé surtout d’hommes. les deux premiers groupes sont composés principalement de personnes plus autonomes que la moyenne et les deux derniers, de personnes moins autonomes que la moyenne. selon le cadre conceptuel retenu, les caractéristiques des services pourraient interagir avec les facteurs de besoin pour modifier les taux d’utilisation du centre de jour et, par exemple, un certain type d’activités pourrait favoriser une participation plus grande au centre de jour pour des sous-groupes de clients auxquels ces activités sont mieux adaptées. lors d’analyses graphiques, on observe que les interactions suivantes semblent présentes en lien avec la régularité d’utilisation du centre de jour, même si aucune de ces interactions n’atteint le seuil de signification statistique de p< , lors des analyses à l’aide du modèle linéaire général contenant les deux variables principales et le terme d’interaction entre ces variables : • les hommes semblent fréquenter plus régulièrement un centre de jour lorsqu’ils participent plus souvent à des groupes spécifiques pour un problème fonctionnel commun, alors que ce semble l’inverse pour les femmes (p=, ); • les hommes semblent fréquenter moins régulièrement un centre de jour lorsqu’ils sont inscrits à un groupe spécifique pour personnes qui ont une atteinte cognitive, alors que ce semble l’inverse pour les femmes (p=, ); • les personnes qui présentent des troubles cognitifs selon le spmsq et qui sont inscrites au centre de jour dans des groupes spécifiques pour ce type de personnes semblent participer plus régulièrement que les autres utilisateurs (p=, ). pour ces deux dernières observations, puisqu’il s’agit de variable dichotomique, il est possible de calculer les taux de participation moyen pour chacun des sous-groupes (tableau ix). tableau ix : régularité de participation des personnes qui ont des atteintes cognitives groupe pour personnes qui ont des troubles cognitifs groupes réguliers terme d’interaction moyenne ecart-type moyenne ecart-type f p personnes avec atteinte cognitive , , , , personnes sans atteinte cognitive , , , , , , hommes , , , , femmes , , , , , , chapitre : discussion générale des résultats les centres de jour sont présents sur l’ensemble du territoire québécois comme une des composantes du réseau de services de soutien à domicile offerts par le système public de santé aux personnes âgées. malgré cela, ils ont été peu étudiés à ce jour. avec le vieillissement de la population et le besoin grandissant de services de soutien à domicile, il importe de mieux comprendre comment ils peuvent agir pour favoriser la qualité de vie et le maintien des personnes âgées dans leur milieu de vie. puisque les centres de jours offrent un ensemble hétérogène de services à des clientèles variées et que ces clientèles ne semblent pas toujours utiliser le centre de jour avec des taux de participation qui permettent de générer des effets, la première étape pour améliorer cette compréhension a été d’étudier leur utilisation. ce projet de doctorat visait donc à documenter l’utilisation des centres de jour dans un contexte québécois, par des personnes âgées qui présentent des incapacités d’origine variée (clientèle générale). plus précisément, deux aspects du phénomène d’utilisation ont été étudiés : le contact avec le centre de jour pendant une période donnée et la régularité de la participation définie comme le taux participations réelles / participations prévues. dans un contexte où la fréquence d’inscription est déterminée par les intervenants du centre de jour en fonction du besoin évalué, cette régularité de participation peut être considérée comme le degré de conformité à la recommandation de participation. de plus, une analyse des activités auxquelles ont participé les utilisateurs de centre de jour a été effectuée afin de déterminer s’il existe une concordance entre les activités et les caractéristiques de santé des utilisateurs. elle a aussi permis d’inclure le type d’activités comme variable dans les analyses des déterminants de la régularité de participation. la première partie de cette discussion résumera les éléments mis en lumière dans chacun des trois articles de cette thèse en reprenant certaines des grandes questions soulevées par cette étude : • qui sont les utilisateurs de centre de jour? (article ) o qu’est-ce qui les distingue des non-utilisateurs? (article ) o parmi les utilisateurs, peut-on distinguer des profils d’utilisateurs ayant des caractéristiques semblables? (article ) • À quels types d’activités participent les personnes âgées lors de leur présence en centre de jour? y a-t-il des liens entre ces activités et les caractéristiques des participants ? (article ) • l’utilisation du centre de jour est-elle régulière? (article ) • parmi les utilisateurs de centres de jour, quels sont ceux qui le font avec le plus de régularité? (article ) chacune de ces questions de la discussion intégrera une synthèse de l’état des connaissances aux résultats de la présente étude. la seconde partie précisera les forces et les limites de cette recherche. enfin, nous proposerons des recommandations pour améliorer l’utilisation des centres de jour et ses effets bénéfiques pour les participants, ainsi que des suggestions pour des recherches futures. Éléments mis en lumière dans chacun des trois volets de l’étude qui sont les utilisateurs de centre de jour? parmi une cohorte de personnes âgées de la région de montréal qui présentent des incapacités indiquées par un résultat de - ou moins au smaf et qui participaient à l’étude sipa, , % ont utilisé un centre de jour pendant la période d’observation de six mois. selon les coordonnateurs de centres de jour rencontrés pour cette étude, il est réaliste de croire que ce résultat reflète la proportion d’usagers des clsc du territoire concerné qui participe aux activités des centres de jour. la proportion de personnes qui auront recours aux services d’un centre de jour à un moment ou un autre au cours de leur processus de vieillissement sera légèrement plus importante. on retrouve peu d’information sur la proportion d’utilisateurs de centre de jour dans les écrits scientifiques, et lorsqu’on en retrouve, les données sont peu comparables entre elles et avec les résultats de la présente étude, car la définition des incapacités varie d’une étude à l’autre. les études recensées font état de , à , % des personnes qui ont au moins une incapacité pour une activité de vie quotidienne ou domestique qui participaient à un centre de jour (barber et coll., ; kosloski et coll., ; lynch et coll., ; strain et blandford, ). sauf celle de strain et blanford, ces études sont américaines. le plus grand pourcentage obtenu dans notre étude ( , % vs , à , %) pourrait s’expliquer de plusieurs manières. la disponibilité restreinte de ce service dans certains territoires peut expliquer les plus faibles pourcentages observés. par ailleurs, le critère d’inclusion dans notre étude requérait de plus grandes incapacités. en effet, un seuil d’incapacités de - au smaf, indique un minimum de deux incapacités complètes ou de plusieurs incapacités partielles. les personnes de notre étude devaient avoir accepté de participer au projet sipa, une étude expérimentale. les personnes qui acceptent de participer à ce type de recherche sont peut-être plus susceptibles de participer aussi à des activités recommandées par les intervenants du système de santé comme les activités en centre de jour. il est aussi possible que les centres de jour québécois offrent leurs services à une plus grande quantité d’individus, en limitant l’intensité de la participation. en effet, dans la présente étude, les participants au centre de jour y étaient inscrits en moyenne à raison de , jour/semaine, alors que dans les études américaines sur le sujet, la fréquence moyenne d’inscription est de plus de trois jours par semaine. enfin, il est possible que ces différences soient aussi en partie explicables par des différences dans les caractéristiques de notre échantillon (milieu urbain, majoritairement francophone et catholique quoique comportant une forte proportion d’individus d’origine pluriethnique). parmi les études recensées, seule celle de lynch et collaborateurs ( ) est limitée comme la nôtre à des sites urbains. la composition des milieux urbains américains diffère vraisemblablement des milieux urbains québécois. qu’est-ce qui distingue les utilisateurs des non-utilisateurs? facteurs prédisposants nos résultats démontrent que les utilisateurs de centre de jour sont plus jeunes que l’ensemble du groupe étudié. une partie de l’explication peut résider dans le fait que les centres de jour rejoignent peu la clientèle très âgée ( ans et plus), qui semble se sentir plus fragile, tolérer moins bien le transport et les activités en groupe, et préférer recevoir des services à la maison. ces résultats sont cohérents avec ceux des études antérieures auprès de la clientèle générale qui démontraient une association négative entre l’âge et l’utilisation du centre de jour (dabelko, ; dabelko et balaswamy, ; henry et capitman, ). dans la plupart des études antérieures, on a observé que les hommes et les femmes utilisent le centre de jour dans des proportions semblables (chappell, ; dabelko, ; douglass et visconti, ). la présente étude confirme ce résultat, mais démontre aussi qu’ils ne l’utilisent pas de la même façon. c’est lorsqu’ils ont subi un avc et lorsqu’ils présentent plusieurs incapacités fonctionnelles que les hommes utilisent davantage le centre de jour. pour les femmes, l’utilisation ne varie pas vraiment en fonction de ces variables. de plus, les hommes ainsi que les femmes plus jeunes semblent utiliser davantage le centre de jour lorsqu’ils ou elles présentent moins de problèmes de santé, alors que c’est l’inverse pour les femmes plus âgées. les personnes plus instruites de cet échantillon utilisent moins le centre de jour. toutefois, des différences statistiquement significatives sont observées seulement lorsqu’on isole ceux et celles qui ont une éducation universitaire. ce résultat est cohérent avec ceux de deux études antérieures (chappell, ; dabelko, ). des résultats similaires avaient été observés pour le statut professionnel, où le fait d’avoir œuvré dans des postes au statut social plus élevé (postes professionnels ou de gestion) avait été associé négativement au contact avec le centre de jour (chappell, ). dans la présente étude, le statut professionnel est mesuré par rapport au contact avec le milieu de la santé (la personne âgée ou son conjoint ont travaillé dans le domaine de la santé). nous cherchions à vérifier si les personnes ayant déjà travaillé dans le domaine de la santé, par une plus grande connaissance des services disponibles, auraient une plus grande probabilité de contact avec le centre de jour. nos résultats n’ont pas démontré ce type d’association. il faut noter ici que les personnes âgées qui ont une éducation universitaire, de même que celles avec un statut professionnel associé au domaine de la santé, sont très peu nombreuses dans notre échantillon. ces résultats mériteraient donc d’être confirmés dans d’autres études. dans la présente étude, où les services de centre de jour sont accessibles dans les quartiers multiethniques, les personnes immigrantes les utilisent autant ou même un peu plus que les personnes nées au canada. chappell ( ), qui avait obtenu un résultat contraire, avait remis en question l’accessibilité des services dans les secteurs plus multiethniques du manitoba. enfin, de façon cohérente avec les études antérieures qui ont démontré que la présence d’un réseau de soutien pour la personne âgée semblait favoriser l’utilisation du centre de jour (baumgarten et coll., ; dabelko, ; wallace, ), nos résultats démontrent que les personnes âgées qui cohabitent avec une personne de soutien semblent plus nombreuses à utiliser le centre de jour (contact). il faut noter cependant que dans notre échantillon multiethnique, ceci s’observe uniquement pour les personnes nées au canada. facteurs de besoin les utilisateurs de centres de jour sont légèrement moins autonomes que les non- utilisateurs. ainsi, les centres de jour remplissent leur mission de répondre aux besoins des personnes en perte d’autonomie. ces résultats sont cohérents avec les résultats d’études antérieures auprès de la clientèle générale qui avaient observé le plus souvent que les personnes qui présentent plus d’incapacités utilisaient davantage le centre de jour (baumgarten et coll., ; chappell, ; lynch et coll., ). toutefois, dans notre étude, cette différence est due aux hommes, puisque pour les femmes, la probabilité de contact avec le centre de jour ne semble pas influencée par le statut fonctionnel. de plus, notons que nous n’avons observé aucune interaction entre le statut fonctionnel et le statut cognitif de la personne âgée. cette interaction était suggérée par les résultats divergents des études auprès de la clientèle générale et celles auprès de la clientèle atteinte de démence. ces dernières observaient plus souvent que les personnes démentes qui présentaient moins d’incapacités fonctionnelles utilisaient davantage le centre de jour (biegel et coll., ; zarit et coll., b). la présence d’atteintes cognitives ne semble pas influencer le fait d’utiliser ou non un centre de jour. environ % des utilisateurs de centres de jour présentent des troubles cognitifs. on observe une proportion similaire de personnes atteintes de troubles cognitifs chez les non-utilisateurs. dans le passé, la présence de troubles cognitifs a été plus souvent associée positivement avec l’utilisation du centre de jour (baumgarten et coll., ; dabelko et balaswamy, ; lynch et coll., ; montgomery et coll., - ). les utilisateurs de centres de jour présentent des scores de dépression légèrement supérieurs à ceux des non-utilisateurs. toutefois, en raison d’un nombre important de réponses manquantes (questionnaires remplis par des substituts), l’importance de cette variable n’a pu être étudiée dans les analyses de régression. la présence de troubles émotionnels, qui peut inclure des symptômes de dépression, de l’anxiété et des troubles du sommeil, n’a pas permis de distinguer les utilisateurs des non-utilisateurs. en effet, ces divers problèmes émotionnels peuvent influencer l’utilisation du centre de jour de façon différente selon le problème en question. baumgarten et collaborateurs ( ) ont trouvé que la dépression était associée à une plus grande intensité d’utilisation du centre de jour, alors que l’anxiété était associée à une plus faible intensité d’utilisation. caractéristiques des services les utilisateurs de centre de jour sont plus nombreux dans les bassins de desserte des centres de jour dont les coûts sont moins élevés. ces résultats corroborent ceux de dabelko ( ), où un coût moyen plus élevé (coût réel pour le client tenant compte des subventions possibles) est observé chez les personnes qui quittent le centre de jour dans les quatre premières semaines de fréquentation, suggérant que le coût peut être un frein à l’utilisation. enfin, à capacités fonctionnelles égales, les utilisateurs de centre de jour sont plus nombreux chez ceux qui reçoivent une aide plus fréquente du clsc pour les activités quotidiennes et domestiques. il est toutefois difficile de dire si c’est l’aide du clsc qui favorise la participation au centre de jour (les intervenants du clsc peuvent renforcer l’importance du centre de jour auprès du client), ou s’il s’agit d’une variable individuelle, en l’occurrence la propension à accepter de l’aide formelle, qui agit à la fois pour augmenter la probabilité de participer au centre de jour et augmenter la probabilité d’utiliser l’aide du clsc. profils d’utilisateurs de centre de jour des analyses en regroupement ont permis de classer les utilisateurs de centre de jour qui présentent des caractéristiques similaires en quatre groupes (voir tableau de l’article ). À notre connaissance, c’est la première fois que de telles analyses sont réalisées. le premier groupe rassemble des personnes qui semblent fragiles. elles sont relativement autonomes et intactes au plan cognitif, mais semblent fragilisées en raison d’un âge avancé, d’un grand nombre de problèmes de santé et de symptômes dépressifs. le deuxième groupe est composé d’individus que nous pouvons qualifier d’utilisateurs précoces. ce sont principalement des femmes qui présentent peu de problèmes de santé et qui semblent fréquenter le centre de jour en raison d’un problème qui diffère pour chaque personne, mais avant que les incapacités reliées à cette condition ne deviennent importantes ( % sont dans la moitié la plus autonome de l’échantillon). le troisième groupe regroupe majoritairement des femmes plus âgées, dont l’autonomie est compromise surtout en raison de troubles cognitifs. enfin, le dernier groupe est composé surtout d’hommes dont l’autonomie semble compromise surtout en raison d’incapacités locomotrices. ces quatre groupes d’utilisateurs suggérent des besoins différents à combler par le centre de jour. les personnes plus autonomes des deux premiers groupes semblent avoir besoin davantage des activités de prévention et de maintien des capacités. une grande partie des gens du groupe de personnes fragiles présentent des symptômes dépressifs et bénéficieraient aussi d’activités thérapeutiques reliées à la santé mentale. les personnes moins autonomes des deux derniers groupes semblent avoir davantage besoin d’activités thérapeutiques qui favorisent l’utilisation des capacités résiduelles, l’apprentissage de moyens de compensation et le répit pour les proches. nous en rediscuterons un peu plus loin, dans nos recommandations pour les centres de jour. notons aussi que les femmes se retrouvent à peu près également dans les trois premiers groupes, alors que le quatrième groupe est composé majoritairement d’hommes qui présentent un plus grand nombre d’incapacités locomotrices. ceci suggère une plus grande variété de raisons de fréquenter un centre de jour pour les femmes que pour les hommes. ce résultat est cohérent avec le résultat du premier article de cette thèse qui indique que les hommes sont plus nombreux à fréquenter un centre de jour lorsqu’ils ont fait un avc et lorsqu’ils sont moins autonomes. À quels types d’activités participent les personnes âgées lors de leur présence en centre de jour? une classification des activités en centre de jour a été établie par un groupe d’experts. les activités des centres de jour ont été regroupées en huit catégories : exercices physiques; groupe spécifique pour un diagnostic ou un problème fonctionnel commun (ex.: groupe avc, groupe parkinson, groupe de dextérité manuelle); activités fonctionnelles; stimulation cognitive; activités musicales ou de réminiscence; sports et jeux physiques; intégration sociale; prévention et promotion de la santé. cette étude s’est aussi intéressée à connaître la fréquence à laquelle les personnes âgées participaient aux divers types d’activités et s’il y avait des différences entre les activités auxquelles elles participaient en fonction de leurs caractéristiques individuelles. ce volet de l’étude est très novateur. nous n’avons pas trouvé une classification reconnue des activités offertes en centre de jour. dans les travaux antérieurs, les activités sont décrites et regroupées de façon différente dans chaque étude, en fonction des préférences des auteurs plutôt qu’en raison de fondements théoriques. de plus, à notre connaissance, c’est la première fois que l’on cherche à établir des liens entre les caractéristiques des individus et les activités auxquelles ils participent. les résultats démontrent qu’en moyenne, les participants ont bénéficié d’activités appartenant à , (± , ) catégories différentes, parmi les huit catégories étudiées. les exercices physiques et les activités d’intégration sociale sont les activités dont ont bénéficié le plus grand nombre d’individus (plus de % des participants) et ce, de façon régulière, c'est-à-dire à une grande proportion de leur présence en centre de jour. ces activités correspondent aux besoins d’un grand nombre de personnes âgées qui fréquentent les centres de jour. de plus, ces deux types d’activités sont facilement réalisables en groupe et probablement facilement acceptées par les participants des centres de jour. les autres catégories d’activités rejoignent de à % des individus lors de à % de leurs présences. on observe que % des individus ont participé aux activités du centre de jour à l’intérieur de journées ou de groupes spécialement adaptés pour les personnes qui ont des troubles cognitifs. dans les cinq centres de jour à l’étude, à l’exception des journées à l’intention des personnes atteintes de troubles cognitifs, les groupes spécifiques sont tous des groupes d’exercices physiques pour un diagnostic physique ou un problème fonctionnel commun. les groupes spécifiques reliés à l’adaptation à des problèmes sensoriels ne semblent pas être offerts. les activités utiles pour améliorer la santé mentale (comme les activités d’intégration sociale et les activités de réminiscence) semblent disponibles pour tous plutôt qu’offertes à des groupes spécifiques. les résultats ont démontré une concordance partielle entre les caractéristiques des individus et les catégories d’activités dont ils ont bénéficié. en lien avec les résultats du premier article de cette thèse qui indiquaient que les hommes participent davantage au centre de jour lorsqu’ils ont fait un avc et lorsqu’ils sont moins autonomes, on observe que les hommes ont participé davantage aux journées pour personnes atteintes de troubles cognitifs et plus régulièrement aux groupes spécifiques pour un problème fonctionnel commun. comme on pouvait s’y attendre, les membres du troisième groupe (incapacités d’origine cognitive) sont proportionnellement plus nombreux que ceux des autres groupes à avoir participé aux journées pour les personnes avec troubles cognitifs. de même, pour l’ensemble des participants, les personnes qui présentent des atteintes cognitives sont proportionnellement plus nombreuses que celles sans atteintes cognitives à avoir participé aux activités du centre de jour lors des journées dédiées à ces personnes ( % vs %). ce qui étonne, c’est que % des personnes identifiées comme sans atteintes cognitives selon les résultats du spmsq sont inscrites aux journées ou groupes pour personnes qui présentent des troubles cognitifs. est-ce parce que de lourdes pertes d’autonomie ont été faussement associées à des pertes cognitives ou parce que le spmsq sous-estime le nombre de personnes atteintes de troubles cognitifs? les données démontrent que les activités de stimulation cognitive sont offertes autant aux personnes qui présentent des atteintes cognitives qu’à celles qui n’en ont pas. cela n’est pas nécessairement mauvais. des activités de stimulation cognitive de divers niveaux (de base, modérée ou avancé) sont possiblement indiquées pour des personnes se situant à divers endroits sur le continuum de fonctionnement cognitif. malheureusement, les données dont nous disposions pour cette étude ne nous permettaient pas de différencier entre divers types de stimulation cognitive. toutefois, environ le quart des personnes qui ont des atteintes cognitives n’ont pas participé à des activités de stimulation cognitive, bien que ce type d’activités semble indiqué pour cette clientèle (knapp et coll., ; spector, orrell, davies et woods, ; spector et coll., ). ce constat mériterait d’être davantage exploré. on observe aussi que peu de personnes ont bénéficié des activités de réminiscence. compte tenu des effets bénéfiques de ce type d’activités pour des personnes dépressives (anderson, ; bohlmeijer, smit et cuijpers, ; frazer, christensen et griffiths, ) et pour des personnes qui présentent des troubles cognitifs (woods, spector, jones, orrell et davies, ), on pourrait s’attendre à ce que ce type d’activité soit davantage exploité en centre de jour. l’intensité d’exposition aux diverses activités proposées par les centres de jour mériterait aussi davantage d’attention. sauf pour les exercices physiques et les activités d’intégration sociale, les sujets de cette étude participent aux autres catégories d’activités en moyenne à moins de % de leurs présences en centre de jour. considérant que, pour plus de % des participants, les présences réelles au centre de jour sont de moins d’un jour par semaine, elles participent à ces diverses catégories d’activités environ toutes les deux semaines. on peut donc se demander si l’intensité d’exposition aux diverses activités proposées est suffisante pour engendrer les effets bénéfiques escomptés de chacune d’elles. toutefois, ces données moyennes sont insuffisantes pour porter un jugement. il y aurait surtout lieu de s’assurer d’une intensité d’exposition suffisante pour les profils de participants priorisés pour chacun des types d’activités. l’utilisation du centre de jour est-elle régulière? en moyenne, les utilisateurs de centre de jour de notre échantillon étaient inscrits au centre de jour à raison de , jour par semaine et y ont effectivement été présents , fois par semaine. toutefois, la médiane n’est que de , fois par semaine. ceci est similaire au résultat d’une autre étude québécoise, celle de baumgarten et collaborateurs ( ) où la participation médiane est de , présence par semaine. lorsqu’on exclut les journées où la personne était dans l’impossibilité de fréquenter le centre de jour parce que le centre était fermé ou parce que la personne était hospitalisée ou placée en hébergement temporaire, une majorité de participants ont une participation qu’on pourrait qualifier de régulière, alors qu’ils sont présents à près des trois quarts des moments prévus. on observe par contre que % des participants sont présents à moins de % des jours prévus. en l’absence de données probantes sur l’intensité optimale d’exposition aux activités et de données comparatives sur la régularité de participation, il est difficile de porter un jugement sur ces résultats. zarit et collaborateurs ( ) suggéraient, d’après une consultation auprès de responsables de centres de jour, qu’une participation à raison de deux fois par semaine serait nécessaire pour induire des effets bénéfiques, en particulier pour la clientèle atteinte de démence. plusieurs études expérimentales ont donc inclus uniquement des personnes inscrites à raison de deux fois par semaine dans l’évaluation des effets de la participation au centre de jour (gaugler et coll., ; schacke et zank, ; zank et schacke, ; zarit et coll., ). toutefois, dans leur étude expérimentale, beaumgarten et collaborateurs ( ) ont démontré une réduction du fardeau des personnes de soutien des participants qui avaient une participation minimale réelle d’une fois par semaine, alors qu’il avait augmenté pour ceux ayant une participation moindre. À la lumière de ces faibles indications, on peut s’inquiéter du fait que pour plus de % de l’échantillon, la participation réelle n’atteint pas une fois par semaine. il faut aussi rappeler que nos résultats concernent un groupe composé de % d’utilisateurs qui fréquentent le centre de jour depuis au moins trois mois au début de la période d’observation. un résultat différent aurait pu être obtenu avec un échantillon constitué de nouveaux utilisateurs de centre de jour. plusieurs études démontrent que les taux d’abandon sont élevés dans les premiers trois à six mois après l’inscription (cox, ; dabelko, ; neufeld et strang, ; schacke et zank ; wells et coll., ; zarit et coll., b) et ces abandons peuvent être précédés d’une période d’absences au cours de laquelle l’inscription est maintenue. parmi les utilisateurs de centres de jour, quels sont ceux qui le font avec le plus de régularité? les résultats de la présente étude apportent une contribution originale à l’état des connaissances sur l’utilisation du centre de jour en identifiant des déterminants de la régularité de l’utilisation du centre de jour, une forme d’évaluation de l’intensité d’utilisation qui, à notre connaissance, n’avait pas encore été étudiée à ce jour. en effet, à ce jour, la plupart des études de l’intensité d’utilisation du centre de jour ne tenaient pas compte du fait que le volume d’utilisation possible n’est pas le même pour tous. dans le contexte américain, où le nombre de places disponibles en centre de jour dépasse la demande, il n’était sans doute pas apparu important de tenir compte de l’intensité en termes de pourcentage de la participation prévue. dans le contexte québécois où la fréquence d’inscription est limitée par la capacité des divers centres de jour, cela prend un sens particulier puisqu’il s’agit de la partie du volume d’utilisation sur laquelle la personne âgée peut exercer un contrôle. facteurs prédisposants l’âge des participants n’a pas été associé à la régularité de la participation dans la présente étude, bien qu’il soit associé négativement à divers autres phénomènes d’utilisation dans les écrits sur les centres de jour (dabelko, ; dabelko et balaswamy, ; henry et capitman, ). il semble que lorsque les participants ou leur conjoint ont travaillé dans le domaine de la santé, leur utilisation du centre de jour est moins régulière. il est possible que ce résultat soit lié au fait que, dans cet échantillon, les travailleurs du domaine de la santé et leur conjoint sont plus susceptibles d’avoir une éducation universitaire (rc : , , ic , : , à , ). les personnes qui ont fréquenté l’université semblent utiliser le centre de jour avec une moins grande régularité, mais ce résultat n’atteint pas le seuil de signification statistique de p< , . toutefois, puisque les personnes âgées qui ont une éducation universitaire, de même que celles avec un statut professionnel associé au domaine de la santé, sont très peu nombreuses dans notre échantillon, il est possible que ce résultat soit en partie attribuable au niveau d’éducation, même si le niveau d’éducation pris isolément n’a pas démontré une association statistiquement significative avec la régularité d’utilisation. facteurs de besoin en ce qui concerne les facteurs de besoin des personnes âgées, le statut fonctionnel de la personne âgée ne semble pas influencer la régularité d’utilisation du centre de jour. de façon cohérente avec les études démontrant une plus grande intensité d’utilisation par les personnes atteintes de troubles cognitifs (baumgarten et coll., ; lynch et coll., ; montgomery et coll., - ), la présente étude a démontré une plus grande régularité de participation par ces personnes, mais uniquement lorsque le fardeau de la personne de soutien est moins élevé. lorsque l’on s’intéresse aux facteurs de besoin de la personne de soutien, les variables les plus étudiées concernent le bien-être psychologique ou le sentiment de fardeau de cette dernière. les études antérieures à ce sujet indiquaient plus souvent que, lorsque la situation d’aide était trop difficile, l’utilisation du centre de jour était plus faible. ces facteurs ont été mis en lumière dans les études auprès d’une clientèle atteinte de démence et ont généralement été associés à une utilisation brève du centre de jour, probablement en raison d’un recours plus rapide à l’hébergement en institution (mävall et thorslund, ; zarit et coll., b). par contre, auprès d’une clientèle générale, baumgarten et collaborateurs ( ) avait observé une utilisation plus intense du centre de jour lorsque le fardeau de la personne de soutien était plus élevé. la présente étude semble confirmer ces résultats antérieurs. nos données démontrent en effet que les individus qui présentent des atteintes cognitives sont plus susceptibles d’utiliser le centre de jour avec une plus grande régularité lorsque le fardeau de leur personne de soutien est plus faible et, à l’inverse, ceux sans atteintes cognitives sont susceptibles d’être des utilisateurs plus réguliers si le fardeau de leur personne de soutien est élevé. caractéristiques des services les caractéristiques organisationnelles des services avaient été peu étudiées à ce jour. nos résultats viennent corroborer certains constats déjà observés concernant le type d’activités offertes. ils apportent un nouvel éclairage sur l’influence de la durée des activités et de la présence d’aide à domicile sur l’utilisation du centre de jour. dans la présente étude, les personnes qui ont une moins grande proportion d’activités de prévention et de promotion de la santé lors de leurs présences en centre de jour semblent être des utilisateurs plus réguliers du centre de jour. ces résultats concordent avec ceux d’henry et capitman ( ), qui avaient trouvé que les participants à des programmes qui mettent l’accent sur le maintien de la santé utilisent moins intensément le centre de jour et sont plus susceptibles de cesser la participation que ceux qui participent à des programmes qui mettent l’accent sur le répit ou sur les activités de stimulation et de croissance. notons que les définitions des activités axées sur la santé diffèrent dans ces deux études. l’étude d’henry et capitman incluait des activités individuelles de suivi de l’état de santé alors que notre étude porte uniquement sur les activités de groupe. nos résultats suggèrent qu’une durée minimale serait nécessaire pour compenser l’effort fait pour se préparer à aller au centre de jour puisque les individus qui sont inscrits pour la journée entière plutôt que la demi-journée se sont avérés des utilisateurs plus réguliers du centre de jour. l’influence de cette variable ne semble pas avoir été étudiée auparavant. dans les analyses bivariées, on a observé que les participants qui reçoivent de l’aide du clsc pour les activités de vie quotidienne ou de vie domestique au moins une fois par semaine, de même que ceux qui reçoivent ce type d’aide les jours où ils sont inscrits au centre de jour sont des utilisateurs plus réguliers du centre de jour. en présence des autres variables dans les analyses de régression, la présence d’aide lors des journées de présences au centre de jour demeure significative. bien que ce constat nécessite d’être confirmé par d’autres études, il est possible que sans cette aide, certains seraient incapables de se préparer pour se rendre au centre de jour. l’aide à domicile pour préparer la personne âgée pour le centre de jour est recommandée par dabelko ( ), mais son influence sur l’utilisation du centre de jour n’avait pas encore été étudiée à ce jour. interaction entre facteurs de besoin et caractéristiques des services le cadre conceptuel retenu pour cette étude, suggère que les caractéristiques des services pourraient interagir avec les facteurs de besoin pour modifier les taux d’utilisation du centre de jour et que, par exemple, un certain type d’activités pourrait favoriser une participation plus grande au centre de jour pour des sous-groupes de clients auxquels ces activités sont mieux adaptées. les résultats n’ont pas démontré d’interactions statistiquement significatives entre les activités et les facteurs de besoin. certaines tendances ont toutefois été observées. elles concernent premièrement la participation aux groupes pour un problème fonctionnel commun ainsi qu’aux groupes pour les personnes qui présentent des troubles cognitifs, par les hommes et les femmes et, en second lieu, la participation aux groupes pour les personnes qui présentent des troubles cognitifs par les personnes qui présentent ou non de telles atteintes. il est probable que la taille de l’échantillon n’ait pas été suffisante pour confirmer des interactions qui pouvaient être présentes avec le degré de puissance statistique souhaité. ces observations mériteraient donc d’être étudiées dans des études futures auprès d’un plus grand nombre d’utilisateurs de centre de jour. dans l’étude des déterminants du contact avec le centre de jour, nous avons noté que les hommes qui ont subi un avc et présentent plusieurs incapacités fonctionnelles sont plus nombreux à utiliser le centre de jour. une des hypothèses avancées pour expliquer cette observation était que les hommes voyaient peut-être davantage le centre de jour comme un endroit pour faire des exercices afin de maintenir ou d’améliorer leurs capacités alors que les femmes pouvaient l’utiliser davantage pour briser l’isolement. le fait que les hommes semblent participer plus régulièrement au centre de jour lorsqu’ils sont inscrits à des groupes pour un problème fonctionnel commun (ex. : groupe avc, groupe parkinson, etc.) apporte un argument de plus à cette hypothèse. l’observation à l’effet que les personnes qui ont des atteintes cognitives semblent participer plus régulièrement au centre de jour lorsqu’elles sont inscrites à des groupes qui leurs sont dédiés, alors que celles sans atteintes cognitives inscrites à de tels groupes semblent participer moins régulièrement, semble d’une logique évidente. il y a lieu de se questionner sur les raisons qui font que des personnes sans atteintes cognitives apparentes au spmsq aient été inscrites à de tels groupes. nous y reviendrons dans nos recommandations pour les centres de jour. forces et limites de ce projet de doctorat forces bien que largement répandus comme services de soutien à domicile, les centres de jour ont été peu étudiés au canada. cette étude remédie en partie à cette lacune en décrivant les caractéristiques des utilisateurs de centres de jour, les services qu’ils reçoivent lors de leurs présences en centre de jour, ainsi que les déterminants de la régularité de la participation, et ce, dans un contexte québécois. par une analyse exhaustive des différentes possibilités d’interaction suggérées par le modèle conceptuel, cette recherche sur les déterminants de l’utilisation du centre de jour a pu, avec un échantillon de taille moyenne, faire ressortir des différences importantes dans le contact avec le centre de jour entre les hommes et les femmes, qui n’étaient pas ressorties dans les études précédentes. elle a aussi pu faire ressortir des différences dans la régularité de participation des personnes qui ont des atteintes cognitives et celles qui n’en ont pas, en fonction du fardeau de la personne de soutien. diverses observations notées par d’autres chercheurs menaient dans cette direction, mais à notre connaissance, cette interaction n’avait jamais été testée de façon formelle. en incluant dans les variables à l’étude, plusieurs caractéristiques des services qui n’avaient pas été beaucoup étudiées à ce jour, cette étude a mis en lumière l’influence de certains facteurs qui représentent des choix organisationnels faits par les centres de jour, choix qui peuvent être modifiés pour mieux rejoindre la clientèle susceptible de bénéficier du centre de jour et mieux cibler les interventions pour améliorer les taux de participation. de plus, parmi les multiples façons d’étudier l’intensité d’utilisation du centre de jour, cette étude a retenu la régularité de participation, définie d’une façon qui excluait une partie importante des absences indépendantes de la volonté de l’individu, par exemple, lorsque le centre de jour était fermé ou alors que la personne était hospitalisée ou placée en hébergement temporaire. ainsi, cette régularité de participation représente, au moins en partie, la conformité à la recommandation de participation. enfin, cette étude comportait un volet exploratoire, dans lequel nous avons cherché à identifier les liens entre les activités qui sont offertes par les centres de jour et les caractéristiques des utilisateurs. ce volet tente de remédier à une lacune importante dans les études actuelles, lacune identifiée entre autres par bea van beveren ( ) et par dabelko et zimmerman ( ), ainsi que par notre recension des écrits. en particulier, les études canadiennes recensées portaient essentiellement sur la structure des centres de jour (gutman et al., a, b; ross-kerr, warren et godkin, ; strang, greschuk, mcilveen, gadacz et neufeld, ; tourigny et coll., ) ou sur leurs résultats (baumgarten et coll., ; strain, chappell et blandford, ), avec très peu d’attention apportée au processus d’intervention. selon bea van beveren ( ), une bonne connaissance descriptive des centres de jour est essentielle au design de bonnes études évaluatives. comme peu de chercheurs s’étaient intéressés auparavant à décrire les activités offertes en centre de jour, nous n’avons pas trouvé une classification reconnue des activités offertes. nous avons fait appel à un groupe d’experts pour créer la classification utilisée dans la présente étude. malgré certaines différences, cette classification rejoint globalement celle proposée dans le manuel d’activités de norman et horton ( ), ce qui lui apporte une certaine validité apparente. ainsi, cette étude présente une méthode originale et structurée qui pourrait servir de référence pour poursuivre l’étude du processus d’intervention en centres de jour. limites comme toute recherche, cette étude comporte certaines limites. la première et la plus importante vient sans doute du recours à une analyse secondaire de données recueillies dans le cadre d’une étude plus large sur les services intégrés aux personnes âgées. À l’époque où cette étude a été menée, on constatait un manque d’homogénéité dans les données consignées par les centres de jour concernant l’état de santé des usagers. ainsi, l’analyse secondaire de données a permis d’obtenir des données valides tant sur les caractéristiques des individus que sur leurs présences en centre de jour. toutefois, cette stratégie impose certaines limites. premièrement, la disponibilité des données a influencé le type d’analyse possible et le choix d’un cadre conceptuel. par exemple, cette étude de l’utilisation a permis de définir les caractéristiques des utilisateurs et des non-utilisateurs de centre de jour, mais ne pouvait pas analyser le processus de prise de décision du professionnel qui dirige une personne vers le centre de jour et de la personne âgée ou de son aidant qui accepte ou non cette recommandation..l’étude de cet aspect important de l’utilisation. aurait nécessité une collecte de données prospective pour comprendre ce qui se passe au moment de la décision. parmi les divers cadres conceptuels recensés pour étudier les déterminants de l’utilisation, le modèle d’utilisation d’andersen demeure le modèle le plus utilisé et, dans sa version révisée (andersen, ), un modèle assez complet. en plus des caractéristiques individuelles (facteurs prédisposants, facteurs facilitants et facteurs de besoin) décrites dans le modèle initial, ce modèle révisé fait mention de l’influence de l’environnement et de la rétroaction obtenue par l’utilisation des services, incluant la satisfaction envers les services, sur l’utilisation future, reconnaissant ainsi, à l’instar de donabedian ( ), que l'utilisation est la résultante de la rencontre entre un individu et un professionnel de la santé (model of the medical care process). toutefois, les données sur la satisfaction envers les services n’étaient pas disponibles et les composantes de l’environnement décrites par andersen et ses collègues relèvent davantage de l’organisation du système de santé à un niveau global (présence d’assurance-maladie, disponibilité de services dans la communauté, etc.) que des caractéristiques organisationnelles propres à chaque fournisseur de services (ex. : taille, structure du personnel, accueil, etc.), caractéristiques qui influenceront vraisemblablement l’expérience de l’individu qui cherche à accéder à un service particulier ou qui doit décider de poursuivre ou non l’utilisation d’un service donné. ainsi, nous avons choisi de compléter le modèle d’anderson par des facteurs reliés aux caractéristiques des services, s’inspirant des travaux de yeats et collaborateurs ( ), de kosloski et collaborateurs ( ) et de montoro-rodriguez et collaborateurs ( ). ces caractéristiques tels le coût des services, le type d’activités offertes, la structure du personnel peuvent avoir une influence sur la satisfaction envers les services et le désir d’y retourner. nous avons aussi inclus dans ces caractéristiques des services, certaines caractéristiques des clsc par lesquels se fait le tri et les recommandations d'utilisation du centre de jour. idéalement, nous aurions inclus aussi des caractéristiques des intervenants des clsc, comme la connaissance que ces intervenants ont des critères d'admission et des places disponibles dans les centres de jour situés sur leur territoire, etc. cependant, certaines variables potentiellement importantes tant pour l’étude des caractéristiques individuelles que pour l’étude des caractéristiques des services n’étaient pas disponibles, incluant la raison de la référence au centre de jour, les attitudes préalables des personnes âgées envers ce type de services ou envers les activités de groupe en général, le nombre et le type de services individuels reçus, les données sur la satisfaction envers les services reçus, ainsi que les données sur les caractéristiques des intervenants des clsc. il a aussi été impossible de distinguer parmi les non-utilisateurs, les personnes qui ont déjà été dirigées au centre de jour et qui ont choisi de ne pas y participer, de celles qui n’ont jamais été dirigées vers ce type de service. deuxièmement, l’échantillon n’est pas pleinement représentatif de l’ensemble de la population qui fréquente les centres de jour québécois, pour au moins trois raisons. tout d’abord, ce n’est pas un échantillon aléatoire des personnes fréquentant les cinq centres étudiés. toutefois, selon les responsables de ces cinq centres, les caractéristiques des participants à cette étude seraient assez semblables à celles de la clientèle de leur centre de jour, à l’exception de la proportion de personnes qui ont des atteintes cognitives, qui semble légèrement plus élevée dans la clientèle de leur centre de jour (entre et %) que dans les participants à cette étude ( %, % et % pour les objectifs , et respectivement). ensuite, cet échantillon n’inclut que des personnes de ans et plus. ces dernières ont été recrutées majoritairement parmi les clients des services de soutien à domicile des clsc. bien que certains centres de jour montréalais acceptent d’autres types de clients, ceux de plus de ans forment plus de % de leur clientèle et plus de % y sont dirigés par leur clsc (regroupement des centres d'hébergement et de soins de longue durée de la région de montréal, ). enfin, cet échantillon ne porte que sur des personnes fréquentant les centres de jour d’une portion bien délimitée de l’Île de montréal. la population des deux territoires de clsc sur lequel le projet s’est déroulé est plus multiethnique que celle de l’ensemble de l’île de montréal ( à % d’immigrants contre % pour montréal) (agence de la santé et des services sociaux de montréal, a; b). il s’agit donc d’un échantillon d’une grande métropole à composition multiethnique comme on en observe de plus en plus dans les différentes métropoles des pays occidentaux. enfin, malgré cette limite, les résultats sont possiblement au moins en partie représentatifs des activités des centres de jour de la région de montréal, les responsables des centres de jour de cette région ayant entrepris une réflexion commune sur les orientations des centres de jour (regroupement des centres d'hébergement et de soins de longue durée de la région de montréal, ; ). on peut cependant penser que des résultats différents auraient pu être obtenus dans les centres de jour des régions rurales de la province puisqu’en plus d’offrir leurs services à une population aux caractéristiques différentes, ceux-ci doivent souvent adapter leur programmation en fonction de possibilités de transport sur un vaste territoire. on notera toutefois l’importance d’offrir des services adéquats aux personnes âgées de la région métropolitaine, puisque % des personnes âgées du québec vivent dans la région métropolitaine de montréal (institut de la statistique du québec, - ; ). troisièmement, si le nombre de sujets est élevé pour le premier objectif de l’étude qui cherche à distinguer les utilisateurs des non-utilisateurs de centre de jour, le nombre d’utilisateurs de centre de jour est relativement petit. cela a pu limiter la capacité à identifier certains déterminants de la régularité de participation avec le niveau de puissance statistique souhaité. quatrièmement, cette étude ne portait que sur cinq centres de jour. ces cinq centres ne présentent pas un portrait complet des caractéristiques organisationnelles retrouvées en centre de jour au québec, même s’ils sont assez représentatifs de ce qui se fait en milieu urbain à montréal. de plus, cela a réduit la possibilité d’étudier l’influence d’une variété de caractéristiques organisationnelles des centres de jour et des interactions entre ces dernières et les caractéristiques sociales ou de santé. en effet, comme chaque centre présente un ensemble de caractéristiques organisationnelles qui lui est propre, des analyses multi- niveaux auraient été nécessaires pour isoler l’effet de caractéristiques organisationnelles précises. de plus, les sujets qui proviennent d’un même centre de jour ne sont pas des unités d'analyse complètement indépendantes. ils risquent de présenter des caractéristiques semblables. cela viole l'un des postulats des procédures telles que la régression logistique et la régression multiple utilisées dans cette étude, celui de l'indépendance des observations. idéalement, il aurait fallu utiliser des procédures statistiques qui tiennent compte de cette auto-corrélation, telles que les modèles multi-niveaux ou encore les gee (generalized estimating equations). les effectifs et le nombre de centres de jour à l’étude étaient insuffisants pour procéder à ce type d’analyse. en plus des limites inhérentes à l’analyse secondaire de données, les données manquantes ont aussi imposé certaines limites à cette étude. par exemple, pour l’analyse des déterminants du contact avec le centre de jour, les caractéristiques des personnes de soutien n’ont pas été considérées étant donné le nombre de questionnaires aux personnes de soutien qui étaient manquants ou incomplets. enfin, une limite importante pour tester l’influence du type d’activités sur la régularité de participation est le manque de classification standardisée des activités. lorsque nous avons voulu créer cette classification, nous avons aussi rencontré des imprécisions dans les statistiques recueillies par les centres de jour. par exemple, certaines données sont enregistrées sous le nom d’un groupe qui pouvait contenir plusieurs types d’activités (par exemple, groupe répit) et nous avons fait des inférences sur les présences à chaque catégories d’activités, à partir du pourcentage approximatif de ces activités à l’intérieur du groupe, selon le responsable du centre de jour. de plus, certains centres de jour n’enregistraient pas les activités individuelles, alors nous n’avons pas pu inclure ces activités dans les analyses. les résultats de cette étude, avec leurs forces et leurs limites, permettent d’émettre diverses recommandations à l’intention des centres de jour et offrent plusieurs suggestions pour des recherches futures. recommandations pour les centres de jour l’objectif général de ce projet de doctorat était d’améliorer la compréhension des facteurs qui influencent l’utilisation des centres de jour dans le but ultime de mieux cibler les interventions pour les personnes les plus susceptibles d’en bénéficier ou encore de revoir l’offre de services de façon à mieux l’adapter aux besoins de la clientèle cible. À la lumière des résultats de cette étude et de certaines données dégagées de la recension des écrits, il est possible d’émettre des recommandations qui seront utiles tant pour les gestionnaires et les intervenants des centres de jour que pour les personnes qui dirigent les clients vers ce service. ces recommandations sont présentées au tableau x et expliquées ci- dessous. elles portent sur les thèmes suivants : ) mieux rejoindre la clientèle le plus susceptible de bénéficier du centre de jour ) offrir une programmation d’activités de groupe mieux arrimée aux besoins individuels des utilisateurs ) viser une intensité d’exposition optimale ) prévoir une utilisation efficiente des ressources ) mieux rejoindre la clientèle le plus susceptible de bénéficier du centre de jour les gestionnaires de centres de jour peuvent se réjouir du fait que ces centres remplissent leur mission d’offrir des services aux personnes en perte d’autonomie, tout en intensifiant leurs efforts pour encore mieux cibler la clientèle le plus susceptible de bénéficier de leurs services. il sera pertinent de vérifier si les besoins d’une personne très âgée peuvent être réellement comblés par le centre de jour ou s’ils seraient mieux satisfaits par d’autres services. ceci doit continuer d’être évalué au cas par cas, selon l’état de santé de la personne âgée, sa capacité à se déplacer et sa motivation à fréquenter un centre de jour, tout en réfléchissant aux possibilités de faciliter l’accès au centre de jour pour les personnes très âgées. par exemple, des adaptations aux modes de transport et à la séquence des périodes d’activités et de repos pourraient être étudiées. il serait pertinent d’approfondir les raisons qui font que les diplômés universitaires utilisent moins le centre de jour. est-ce réellement parce que leurs besoins sont moins grands ou est-ce parce que la programmation d’activités en centre de jour n’est pas adaptée aux besoins de ce type de clients? s’il s’avère que c’est la seconde option qui décrit le mieux la plus faible participation observée, il y aurait lieu de se questionner sur les façons d’adapter les activités des centres de jour aux besoins et aux intérêts des gens plus instruits. les hommes et les femmes n’utilisent pas le centre de jour de la même façon et ont probablement des attentes différentes envers ce type de service. ainsi, en prenant connaissance des résultats de cette étude, les intervenants qui dirigent les personnes âgées vers les centres de jour pourront réaliser l’importance de discuter de cette possibilité avec les hommes qui ont fait un avc et qui présentent des incapacités importantes puisque, parmi le clientèle masculine, c’est le groupe qui semble répondre le plus positivement à l’offre de fréquentation du centre de jour. ils pourront aussi se questionner sur les façons de mieux rejoindre les autres hommes, en particulier ceux atteints de troubles cognitifs pour lesquels les personnes de soutien présentent un fort besoin de répit. en effet, les intervenants, tant à l’intérieur des centres de jour que ceux qui y dirigent des clients, voudront vérifier s’ils prennent les bons moyens pour rejoindre les personnes atteintes de troubles cognitifs et les personnes dont l’aidant est épuisé. répondre au besoin de répit de ceux qui prennent soin d’une personne atteinte de troubles cognitifs présente un défi et un effort additionnel peut être nécessaire pour bien les aider. parmi les suggestions à cette fin, notons l’aide pour préparer la personne âgée avant sa journée au centre de jour, ainsi qu’une fréquence d’inscription et des durées suffisamment importantes pour compenser les efforts de préparation et de stimulation nécessaires pour amener la personne âgée à participer au centre de jour. des activités de soutien et de résolution de tableau x : recommandations pour les centres de jour recommandations mieux rejoindre la clientèle le plus susceptible de bénéficier du centre de jour • orienter les personnes très âgées ( ans et plus) avec grande fatigabilité vers d’autres services. • documenter les raisons qui font que les diplômés universitaires utilisent moins le centre de jour. • les hommes qui ont fait un avc et qui présentent des incapacités importantes répondent généralement bien au programme de centre de jour et pourraient y être dirigés plus systématiquement. • pour rejoindre les personnes atteintes de troubles cognitifs dont l’aidant est épuisé, offrir du soutien pour la préparation de la personne âgée à sa venue au centre de jour. • offrir des activités attrayantes et non menaçantes pour les personnes qui présentent des atteintes cognitives. • offrir des périodes de répit suffisamment longues pour compenser les efforts de préparation. • limiter le coût des services (transport et repas) qui peut créer un frein à l’utilisation. offrir une programmation d’activités de groupe mieux arrimée aux besoins individuels des utilisateurs • mieux définir les programmes d’activités en centre de jour. en fonction des profils de participants identifiés dans la présente recherche, quatre sous-programmes sont proposés comme point de départ à cette réflexion : − programme préventif pour personnes fragiles ou à risque, en raison de problèmes de santé physique; − programme préventif et thérapeutique pour les personnes fragiles ou à risque, en lien avec la santé mentale; − programme de stimulation et de répit pour les personnes qui ont des incapacités principalement d’origine cognitive; − programme thérapeutique et de répit pour les personnes qui ont des incapacités principalement d’origine motrice. • lors des programmes de nature préventive, favoriser l’adoption d’activités dans lesquelles les participants sont actifs. • offrir des activités comportant différents niveaux de difficulté pour s’adapter au niveau fonctionnel des différents groupes. • offrir les activités de réminiscence plus régulièrement et de manière plus ciblées envers les clientèles le plus à même d’en bénéficier, par exemple, les personnes qui présentent des atteintes cognitives ou des symptômes dépressifs. • Éviter d’intégrer dans des groupes pour les personnes qui présentent des atteintes cognitives, des personnes cognitivement intactes qui présentent d’autres besoins. viser une intensité d’exposition minimale • privilégier la participation en journées entières plutôt qu’en demi-journées. • pour le répit: privilégier l’inscription à raison de deux fois par semaine ou plus. • s’assurer que les diverses catégories d’activités du centre de jour soient offertes avec des fréquences suffisantes pour engendrer les effets bénéfiques escomptés de ces activités. prévoir une utilisation efficiente des ressources • documenter le taux d’absentéisme, pour planifier un plus grand nombre d’inscriptions par jour en fonction de ce taux. problèmes pour les aidants pourraient aussi être utiles pour favoriser la participation de cette clientèle au centre de jour (gitlin et coll., ). de plus, des activités attrayantes et non menaçantes pour les personnes qui présentent des atteintes cognitives peuvent faciliter leur participation au centre de jour et diminuer l’effort des aidants pour stimuler cette participation. dans notre échantillon, les personnes qui ont des atteintes cognitives tendent à participer plus régulièrement aux activités des centres de jour lorsqu’elles sont inscrites à des groupes qui leur sont destinés. si cette observation était confirmée par d’autres données, il serait pertinent d’encourager ce type de groupe à l’intérieur des centres de jour. de plus, pour les hommes en particulier, on pourrait se demander si les activités actuelles sont trop associées aux loisirs féminins et s’il y aurait des types d’activités plus attrayantes pour ces derniers? les intervenants des centres de jour devraient aussi miser sur un bon arrimage avec le clsc, puisque l’aide du clsc peut favoriser la participation au centre de jour. les résultats de la présente étude suggèrent aussi de porter attention au coût des services qui, s’il est trop élevé, crée une contrainte qui peut réduire l’accès au centre de jour. ) offrir une programmation d’activités mieux arrimée aux besoins des utilisateurs bien qu’ils méritent d’être confirmés par des recherches plus poussées, les éléments mis en lumière dans cette étude soulèvent des questions sur l’adéquation entre la programmation d’activités, les besoins des individus et les objectifs visés. nous aborderons d’abord les questions reliées au cadre de référence pour la programmation d’activités, puis celles reliées aux activités elles-mêmes. le cadre de référence pour la programmation d’activités le cadre de référence pour les centres de jour de l’acaq ( ) suggéraient une programmation d’activités répartie en six sous-programmes portant sur les aspects suivants : incapacités fonctionnelles d’origine motrice, incapacités fonctionnelles d’origine sensorielle, incapacités fonctionnelles d’origine cognitive, facteurs socio- environnementaux, santé physique, et santé mentale. la présente étude dénote peu de concordance entre les activités dont ont bénéficié les participants en centre de jour et les recommandations d’experts établies à partir des ces six sous-programmes. ceci soulève la question à savoir si ces sous-programmes représentent bien la réalité des centres de jour et les besoins des participants. d’autres observations nous amènent aussi vers ce questionnement. par exemple, dans les recommandations de notre groupe d’experts, les activités de deux sous-programmes (incapacités fonctionnelles d’origine motrice et santé physique) semblaient relativement similaires. ensuite, les données empiriques ne démontrent aucune activité particulière pour les personnes qui présentent des difficultés sensorielles. il y a donc lieu de remettre en question l’existence réelle de ce sous- programme dans les centres de jour. enfin, les divers sous-programmes de ce cadre de référence distinguent les individus davantage en fonction de l’origine de leurs difficultés que selon leur niveau fonctionnel. cependant, lorsqu’on planifie des activités de groupe, il semble important de tenir compte du niveau fonctionnel pour prévoir des activités qui présentent le niveau de stimulation approprié aux capacités des individus qui participent au groupe. par ailleurs, les quatre groupes de participants identifiés par nos analyses en regroupement semblent suggérer des besoins différents à combler par le centre de jour. les personnes fragiles et les utilisateurs précoces qui présentent moins d’incapacités que la moyenne des participants, semblent avoir besoin davantage des activités de prévention comme la surveillance de l’état de santé et, lorsqu’elle survient, l’identification rapide de la détérioration de la santé, pour permettre une intervention précoce par une référence à une ressource appropriée. elles profiteront aussi d’activités de groupe pour prévenir les conséquences négatives de l’isolement qui peut survenir en raison de la fragilité. une attention particulière devrait être apportée aux personnes qui présentent des symptômes dépressifs et qui profiteraient certainement d’activités démontrées efficaces pour réduire ces symptômes. les personnes moins autonomes des deux derniers groupes semblent déjà présenter des incapacités fonctionnelles importantes, dont l’origine est surtout attribuable à des atteintes cognitives pour les personnes du troisième groupe et à des atteintes motrices pour celles du quatrième groupe. ces personnes semblent avoir davantage besoin d’activités thérapeutiques qui favorisent l’utilisation des capacités résiduelles ainsi que l’apprentissage de moyens de compensation pour les pertes de capacités. elles profiteront certainement aussi des activités qui visent le maintien ou l’amélioration de la qualité de vie, de l’estime de soi et des liens sociaux et préviennent les conséquences négatives de l’isolement qui peut survenir en raison des incapacités. de plus, le répit aux personnes de soutien semble indiqué pour une majorité de ces personnes. les personnes dont l’autonomie est compromise surtout en raison de troubles cognitifs seront davantage valorisées dans des activités qui sont adaptées à leurs pertes cognitives et leur garantiront des chances de succès, tout en présentant certains défis au plan physique. celles dont l’autonomie semble compromise surtout en raison d’incapacités locomotrices se sentiront sans doute plus valorisées dans des activités comportant un plus haut niveau de défi au plan cognitif. À la réunion du groupe d’intérêt des responsables de centres de jour de montréal le mai , l’idée de revoir le cadre de référence pour la programmation d’activités en fonction des quatre groupes de participants identifiés par la présente recherche est apparue intéressante pour les personnes présentes. elle mériterait d’être étudiée plus à fond. nous suggérons quatre sous-programmes qui pourraient servir de point de départ à cette réflexion : • programme préventif pour personnes fragiles ou à risque, en raison de problèmes de santé physique; • programme préventif et thérapeutique pour les personnes fragiles ou à risque, en lien avec la santé mentale; • programme de stimulation et de répit pour les personnes qui ont des incapacités principalement d’origine cognitive; • programme thérapeutique et de répit pour les personnes qui ont des incapacités principalement d’origine motrice. les activités des centres de jour peu importe le type de regroupement de clientèle retenu, il sera pertinent de porter davantage attention aux types d’activités à offrir à l’intérieur des divers sous-programmes des centres de jour. en premier lieu, on note que les activités de prévention et de promotion qui ont été observées dans cette étude sont plus souvent des activités de type éducatif au cours desquelles les individus sont passifs. ces activités sont peut-être moins appréciées des participants puisqu’elles sont associées à une plus faible régularité de participation. on devrait sans doute utiliser les activités éducatives passives avec parcimonie et chercher à transmettre les messages de promotion de la santé dans des activités plus dynamiques. des activités de nature préventive dans lesquels les participants sont actifs, par exemple des groupes de cuisine santé, sont sans doute plus stimulantes que des présentations formelles sur le même sujet. l’effet de ces deux types d’activités sur la régularité de la participation reste à évaluer. en second lieu, on peut penser qu’il est pertinent de maintenir certaines activités comme les exercices physiques et les activités d’intégration sociale pour toutes les clientèles du centre de jour. ces activités correspondent aux besoins d’un grand nombre de personnes âgées qui fréquentent les centres de jour. de plus, ces deux types d’activités sont facilement réalisables en groupe et probablement facilement acceptées par les participants des centres de jour. de même, en portant attention à choisir le niveau approprié à chaque clientèle, des activités de stimulation cognitive pourraient aussi être offertes à l’ensemble des clientèles, puisqu’il existe certaines données voulant que la stimulation cognitive puisse aider à prévenir l’apparition de déficits cognitifs (wilson et coll., ). on insistera cependant aussi sur le fait que certaines catégories d’activités devraient être davantage ciblées en fonction des diverses clientèles les plus à même d’en bénéficier. par exemple, diverses approches ayant démontré des résultats probants pour diminuer les symptômes dépressifs (réminiscence, thérapie cognitive behaviorale - voir frazer et coll., ) pourraient être offertes davantage et de façon plus ciblée pour cette clientèle. les centres de jour devraient s’assurer d’avoir suffisamment d’intervenants formés à l’intervention psychosociale pour animer ce type d’activités de groupe. de même, les activités destinées aux personnes qui présentent des atteintes cognitives pourraient inclure davantage d’activités de réminiscence et de stimulation cognitive adaptée à leurs capacités, puisque des travaux ont démontré l’utilité de ces activités pour cette clientèle (knapp et coll., ; spector et coll., ; spector et coll., ; woods et coll., ) troisièmement, il y a lieu de s’interroger sur la participation de personnes sans atteintes cognitives selon le spmsq dans les groupes destinés aux personnes qui ont des troubles cognitifs puisque, même si la différence n’est pas statistiquement significative, la participation de ces personnes au centre de jour semble moins assidue. une explication possible est que le spmsq n’identifie peut-être pas tous les types d’atteintes cognitives. il reflèterait mieux les difficultés de mémoire et d’orientation et moins bien les difficultés des fonctions exécutives comme la planification et le jugement. cependant, d’après nos discussions avec des responsables de centre de jour, il est aussi possible que les lourdes incapacités physiques soient faussement associées à des pertes cognitives. il est possible que des personnes avec de lourdes atteintes physiques soient inscrites dans ces groupes pour offrir plus de journées de répit à leur aidant ou parce qu’elles auraient de la difficulté à participer aux activités d’autres groupes en raison de leurs déficiences physiques. bien que cela réponde à des impératifs pratiques, cette situation n’est peut-être pas idéale pour répondre aux besoins des individus sans atteintes cognitives et la question mériterait d’être étudiée plus à fond par les responsables de la programmation des activités en centre de jour. ) viser une intensité d’exposition optimale il existe peu de données sur l’intensité optimale d’exposition aux activités du centre de jour afin d’induire des résultats bénéfiques chez les participants. dans la présente étude, les personnes inscrites à des journées entières sont des utilisateurs plus réguliers du centre de jour que celles inscrites en demi-journée. ceci suggère que la participation pendant une journée entière serait peut-être nécessaire pour compenser l’effort de préparation par la personne âgée elle-même ou par son aidant et sentir que les bénéfices de la participation au centre de jour excèdent les inconvénients. les quelques indications dont nous disposons portent aussi à croire que lorsque le but du centre de jour est de réduire le fardeau des aidants, une participation réelle d’une fois par semaine serait un minimum nécessaire (baumgarten et coll., ). À la lumière de nos résultats faisant état d’un taux moyen de participation réelle de , % des participations prévues et un taux médian de , %, il devient évident que, pour atteindre une participation réelle minimale d’une fois par semaine pour une majorité de participants, la fréquence d’inscription doit être plus élevée. ainsi, lorsque le but de la participation au centre de jour est de réduire le fardeau des aidants, il semble pertinent de recommander une fréquence d’inscription d’au moins deux fois par semaine. les connaissances actuelles ne permettent pas de porter un jugement sur la fréquence optimale de participation au centre de jour pour répondre à d’autres types de besoins. comme mentionné précédemment, il sera aussi pertinent de s’interroger sur la fréquence de la participation aux diverses activités du centre de jour pour s’assurer qu’elle soit suffisante pour engendrer les effets bénéfiques escomptés de chacune d’elles. il y aurait peut-être lieu de distinguer entre les activités offertes dans un but de prévention et les activités offertes dans un but thérapeutique, pour chaque type de clientèle. il est probable que les activités offertes dans un but thérapeutique nécessitent une fréquence de participation plus élevée. il y aurait lieu de documenter les fréquences et les intensités recommandées dans les écrits scientifiques pour que divers types d’activités puissent induire des effets thérapeutiques chez différentes clientèles. ) prévoir une utilisation efficiente des ressources les programmes qui ont des listes d’attentes doivent porter une attention particulière aux taux de participation. pour une utilisation efficiente de leurs ressources, les centres de jour qui ont des taux de participation similaires à ceux observés dans cette étude ( , % des présences possibles) peuvent inscrire de à % plus de participants que leur capacité estimée, sans que la participation quotidienne n’excède la capacité souhaitée. pistes de recherche pour le futur il serait certainement intéressant de poursuivre l’analyse des déterminants de l’utilisation des centres de jour dans le contexte québécois et de vérifier si les résultats de cette étude peuvent être reproduits avec des échantillons aléatoires de personnes âgées qui présentent des incapacités, tirés d’une plus grande variété de régions du québec. pour éviter certaines des limites de la présente recherche, une telle étude devrait chercher à : • recueillir des données sur certaines variables incluses dans le cadre conceptuel et non disponibles pour la présente recherche, comme par exemple, les attitudes envers les activités de groupe, les caractéristiques des intervenants des clsc qui dirigent les personnes âgées vers le centre de jour, etc. • lors du recueil de données sur la santé mentale, distinguer les symptômes reliés à la dépression de ceux reliés à l’anxiété, puisque ces facteurs peuvent avoir des influences divergentes sur l’utilisation du centre de jour. • s’interroger sur les meilleures façons de rejoindre les personnes de soutien afin de pouvoir obtenir un meilleur taux de réponse et de pouvoir inclure leurs caractéristiques dans toutes les analyses. • recueillir des données auprès d’un nombre plus important de participants au centre de jour. en particulier, tenir compte de l’analyse des possibilités d’interaction de certaines variables dans le calcul de la taille échantillonnale afin de s’assurer d’une puissance statistique adéquate. • en préalable à une telle étude, implanter une classification des activités en centre de jour qui permettrait un recueil de données plus fiable et subséquemment une meilleure comparaison entre les centres de jour. cette classification devrait inclure autant les activités individuelles que les activités de groupe et les activités de soutien aux proches aidants. ceci permettrait une étude plus approfondie des liens entre les activités offertes et la régularité de la participation au centre de jour. la réflexion sur l’utilisation des centres de jour entreprise dans cette thèse soulève aussi de nouvelles questions de recherche. des études qualitatives auprès de personnes auxquelles on a recommandé la participation au centre de jour pourraient apporter un éclairage intéressant quant à certaines observations de la présente étude. par exemple, il serait intéressant de documenter comment l’expérience des hommes diffère de celle des femmes en ce qui concerne la recommandation de fréquentation et la participation à un centre de jour. il serait intéressant d’explorer, parmi les personnes âgées qui présentent des incapacités et n’utilisent pas un centre de jour, les différences entre les personnes qui sont moins dirigées vers ce service et celles qui y sont dirigées mais refusent d’y participer ou cessent plus rapidement leur participation. ceci pourrait se faire par des recherches auprès des clsc qui dirigent les clients vers les centres de jour et sont tenus de faire un suivi des résultats puisqu’ils demeurent responsables des plans de services de ces clients. les résultats de cette étude suggèrent que la collaboration des services de soutien à domicile des clsc pour préparer la personne âgée pour le centre de jour peut améliorer la régularité de la participation. il serait intéressant d’explorer si d’autres types de collaboration peuvent faciliter la participation au centre de jour. enfin, le but ultime de la recherche sur les centres de jour est de mieux comprendre comment ces derniers peuvent atteindre leurs objectifs. l’objectif général du centre de jour est de « favoriser le maintien à domicile de la clientèle âgée et donc de retarder, sinon éviter, le recours à un milieu d’hébergement institutionnel, et ce, dans le contexte d’une qualité de vie optimale » (agence de la santé et des services sociaux de montréal, ). l’amélioration de l’état de santé ou des capacités fonctionnelles des participants ainsi que l’amélioration du bien-être psychologique des personnes de soutien et la réduction de leur fardeau subjectif et objectif peuvent constituer des résultats intermédiaires. les recherches futures sur l’efficacité des centres de jour à atteindre ces résultats devraient idéalement inclure comme variables de contrôle, des données sur les taux d’utilisation et sur les processus d’intervention. des études sur l’intensité minimale d’exposition au centre de jour nécessaire pour induire des effets bénéfiques sont encore pertinentes. nous disposons actuellement de données probantes seulement pour la fréquentation minimale pour réduire le fardeau des aidants. des recherches plus approfondies sur les liens entre l’atteinte des objectifs des centres de jour et les processus d’intervention seraient aussi indiquées. les processus d’intervention étudiés devraient inclure le type d’activités offertes en centre de jour et leur fréquence, de même que les activités offertes par les clsc en complémentarité des activités des centres de jour. on pense ici en particulier aux activités de soutien pour les proches aidants. en effet, ce sera souvent une combinaison d’interventions qui permettra de favoriser le maintien à domicile de la clientèle âgée. chapitre : conclusion dans le but de favoriser le maintien à domicile de la clientèle âgée et donc de retarder, sinon éviter, le recours à l’hébergement en milieu institutionnel, les centres de jour offrent des services aux personnes âgées qui demeurent à domicile et présentent des incapacités, principalement au moyen d’activités de groupe, et ce, en complémentarité avec les autres services de soutien à domicile des clsc. ce projet de doctorat avait pour but d’améliorer notre compréhension des centres de jour en étudiant leur utilisation. cela nous a permis de constater que conformément à leur mission, les centres de jour rejoignent une bonne proportion des personnes âgées qui présentent des incapacités. nous avons pu faire ressortir les caractéristiques des clients les plus susceptibles d’y participer, les types d’activités auxquelles les utilisateurs ont participé le plus fréquemment, de même que les caractéristiques des personnes qui ont une participation plus régulière en centre de jour. nous avons aussi constaté que l’intensité d’exposition au centre de jour, et en particulier à certaines catégories d’activités thérapeutiques, semble faible. ceci soulève la question des seuils d’exposition nécessaires pour induire des effets favorables sur le maintien à domicile et sur la qualité de vie de la clientèle cible, bien que les données disponibles sur la participation minimale pour induire divers types d’effets sont encore insuffisantes. l’intégration des résultats de la présente étude aux connaissances obtenues de la recension des écrits a permis d’émettre certaines recommandations pour mieux rejoindre la clientèle cible et améliorer la régularité de participation de certaines catégories de clients, mieux cibler les activités qui sont offertes en centre de jour, de même que pour viser une 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( b). patterns of adult day service use by family caregivers: a comparison of brief versus sustained use. family relations: interdisciplinary journal of applied family studies, ( ), - . annexe i article rédigé pour répondre aux exigences de l’examen de synthèse du programme d’études doctorales en santé publique caregiver satisfaction with support services: influence of different types of services. jacinthe savard , nicole leduc , paule lebel , françois béland , howard bergman , , groupe de recherche solidage, faculté de médecine, université de montréal et université mcgill clinique universitaire interprofessionnelle de réadaptation, université d'ottawa groupe de recherche interdisciplinaire en santé (gris), faculté de médecine, université de montréal centre d’expertise sur la santé des personnes âgées et des aidants (cespa), institut universitaire de gériatrie de montréal division of geriatric medicine, université mcgill et jewish general hospital, montréal soumis : / / , accepté pour publication : / / publié : journal of aging and health, ( ), - ( ) i- author’s note the first author was supported during the present study through a doctoral award from the alzheimer society of canada. the study used data collected during the system of integrated care for older persons (sipa) project, funded by the health transition funds of health canada, the canadian health services research foundation and the ministry of health and social services of the quebec province. the authors wish to thank luc dallaire and john fletcher, research coordinators with the sipa project for their helpful cooperation during data analysis, mary egan for her helpful comments on the article, and danielle boisvert, for her help with reference management. reprints can be obtained from jacinthe savard, c/o nicole leduc, groupe de recherche interdisciplinaire en santé, faculté de médecine, université de montréal, c.p. , succ. centre-ville, montréal (québec) h c j ; e-mail: savard.gelinas@sympatico.ca or nicole.leduc@umontreal.ca. i- abstract objectives: to examine factors influencing satisfaction with support services of caregivers of frail older adults, and to determine what types of support services are associated with greater satisfaction, controlling for frail individual and caregiver characteristics. methods: the study includes frail older adults–caregiver dyads from montreal in which caregivers had received support services. the csq- was used to measure caregiver satisfaction with these services. results: caregivers receiving information, advice or emotional support, and those caring for seniors receiving integrated care were more likely to be highly satisfied. other factors increasing satisfaction were fewer number of health problems of frail individuals, caregiver being the spouse of the frail person, as well as greater caregiver perceived health, autonomy in iadl, and available social support. discussion: the results support the importance of integrated care for frail seniors and informational services for their caregivers. keywords: caregivers, client satisfaction, community long-term care, frail seniors, integrated care i- introduction frail older adults receive the vast majority of their support from family members and, in some cases, from friends or neighbors (connidis, ). many studies have pointed out the perceived burden resulting from caregiving as well as the risks for the health of the caregivers (chenoweth & spencer, ; schulz & beach, ). in light of these findings, it is imperative that health care providers for older clients also consider caregivers’ needs for care and support services (brotman & yaffe, ; brown, potter, & foster, ; ducharme, lebel, & bergman, ; schulz & beach, ). in this context, research on caregivers’ perceptions of services is also needed (rosenthal & shannon, ). satisfaction is an important outcome of care. studies of satisfaction with medical care have demonstrated its positive link with higher use of care, greater compliance to treatment, and higher chances to obtain positive results from care (attkisson & greenfield, ; pascoe, ; wellwood, dennis, & warlow, ). in the area of geriatric care, proctor, morrow- howell, albaz, and weir ( ) report a study in which it was found that the perceptions of benefits obtained from a geriatric rehabilitation unit week after discharge predicted continued community stay at weeks post-discharge. the important role of caregivers in the use of services by frail seniors is also well documented (bass & noelker, ). common support services for caregivers include information and advice on the illness of their older relative or friend and the resources available to help them with their care; emotional support either through a support group or individual counselling; respite offered at home, in day care centers or by temporary admission to an institution; and provision of home care services to assist the frail seniors to complete activities of daily living (adl) or instrumental activities of daily living (iadl) tasks, relieving caregivers from some of these responsibilities. existing studies of caregiver satisfaction are often limited to one type of services. for example, caregivers report high levels of satisfaction with respite services (henry & capitman, ; jarrott, zarit, parris-stephens, townsend & greene, ; weissert et al., ) and home care services (chiu, ). most of these studies did not examine factors i- leading to different levels of satisfaction. we found only four studies that examined factors influencing caregiver satisfaction with services designed to support them in the caregiving role. these studies measured satisfaction with home-based respite (bear, griffin, sauer, & milspaugh, ), day care for older persons in general (weissert et al., ) or for cognitively impaired seniors (jarrott et al., ), and a variety of community long-term care services, including some support services for caregivers (durand, krueger, chambers, grek, & charles, ). in these studies, the characteristics of the frail seniors associated with lower caregiver satisfaction are adl impairment, dementia or at least one disruptive behavior (durand et al., ), and increasing age (weissert et al., ). the caregiver variables associated with lower caregiver satisfaction are being a female, being of a different cultural heritage than the majority, not living with the frail senior or thinking about placement for the frail senior (durand et al., ), and caregivers not working (weissert et al., ). other researchers have studied caregiver satisfaction with medical care or discharge planning of their older relative. areas that generally receive lower satisfaction scores in these studies are often related to information they received on diagnosis, course of illness or community services (haley, clair, & saulsberry, ; van hout, vernooij-dassen, hoefnagels, & grol, ; venohr et al., ), or communication between hospital staff and the caregiver (jones & lester, ; wellwood et al., ). other variables that have demonstrated association with satisfaction with medical care in general are also identified as important control variables to include in any studies of satisfaction. they are age, education, marital status and social status (hall & dornan, ; hall, roter and katz, ); life satisfaction; and health status (cleary & mc neil, ; hall, feldstein, fretwell, rowe, & epstein, ). the objective of the present study is to examine which types of services (information and advice, emotional support, respite, help with adl or iadl tasks, other) and what model of care delivery (regular or integrated care) are associated with greater satisfaction controlling for health and functional status of the frail senior as well as caregiver sociodemographic characteristics, relationship with the frail individual, health i- and functional status, feeling of burden and social support. from the literature review on caregiver satisfaction, it was expected that receiving information and advice would be associated with greater satisfaction. as respite is often identified as an area of great need in studies of caregivers’ needs (caserta, lund, wright, & redburn, ; fortinsky & hathaway, ; theis, moss, & pearson, ), it was also expected to be related to greater caregiver satisfaction. finally, it was expected that receiving integrated care would lead to greater caregiver satisfaction (bergman et al., ). design and method this study uses data collected as part of a larger study, the services intégrés pour personnes agées (system of integrated care for older persons; sipa) project, which evaluated integrated services for the frail seniors, based on a model of care developed by a group of researchers and health care managers from mcgill university and université de montréal (bergman et al., ). the model was applied with some changes in a demonstration project implemented in two centres locaux de services communautaires (clsc) of montreal. in quebec, regular home care services are provided by clscs. clscs are part of the quebec ministry of health and social services network and exist throughout the province. their home care services include home nursing, social work, rehabilitation services, help with personal care and iadl, home respite, referrals to community agencies, and evaluation of admissibility and referrals for admission to long term care institutions. these services are free of charge, and access is on the basis of evaluated need. as the amount of services available from the clsc is often limited, some clients may buy additional services from other service providers. this happens mainly in the area of help with iadl, an area receiving less priority for clsc publicly funded services. the government promotes the development of nonprofit organizations to provide house cleaning services or meal delivery at low cost for seniors. in the clscs, a team member designated as the primary respondent for the client is responsible for coordinating the services provided through this organization. although clsc care providers often refer i- clients to other health care organizations, they are rarely involved in the planning of care to be provided by these other organizations. the caseload of a primary respondent can be as high as clients. the sipa project was administered by the two participating clscs as a very distinct program. as a demonstration project, it was offered to a limited number of clients. in contrast to the regular clsc care, in the sipa project, a case manager with a multidisciplinary team assumes the clinical responsibility as well as the responsibility for the optimal use of resources throughout the system of care for the client. the team is responsible for assessing and carrying out most of the community-based services including the same kind of services as those regularly offered by the clsc. other important characteristics of the demonstration project include availability of a telephone service hours a day, days a week, for quick and personalized response; the use of interdisciplinary protocols linking community and primary medical care; capacity to rapidly mobilize resources to respond to needs and avoid inappropriate hospital utilization; and in case of hospitalization, follow-up with the hospital team. to facilitate rapid mobilization of resources, the sipa team had access to reserved places in residences for seniors and to a budget for increased temporary home care services. also, the caseload of case managers was limited to clients to insure adequate and personalized response to needs. study population from january to august , the sipa team recruited , senior participants from persons receiving home care services from the two participating clscs, who met the following criteria: presented with disabilities as measured by a score of – or less on the functional autonomy measurement system (hébert, carrier & bilodeau, ; ), were aged or over, and were not institutionalized. in addition, they needed to speak french or english or have a relative or close friend who could communicate with health care professionals and research personal in french or english. of the , senior subjects recuited in , were followed-up in , and of these participants indicated that they had a caregiver. i- participants for the present study are limited to frail older adults – caregiver dyads, in which the caregiver reported having received at least one support service during the study period and answered the questions on caregiver satisfaction with support services. caregivers needed to understand french or english to be included in this analysis. there were dyads meeting these criteria. from this number, were excluded from the analysis because of missing data on important variables either from the caregiver or the frail senior questionnaire. twenty dyads were also excluded because the frail person had been admitted to an institution before the administration of the satisfaction questionnaire. comparison between included and excluded dyads on the sociodemographic variables listed in table revealed that they were similar except for the two following statistically significant differences (p<. ): excluded caregivers were less likely to be married, and excluded caregivers and frail seniors were more likely to speak a language other than french or english at home. analyses are based on a final sample of dyads. a little more than half of these dyads (n= ) received the integrated care being evaluated in the larger study. the others (n= ) received regular care from their clsc. measurements the dependent variable, caregiver satisfaction, was measured by the client satisfaction questionnaire (csq- ; larsen, attkisson, hargreaves, & nguyen, ). the csq- is a measure of general satisfaction that has been used in a wide variety of settings. it can be used to measure global satisfaction with various types of services. questions are rated on four-level likert-type scales. this instrument includes questions on the following eight items: the general quality of services, if the participant received the kind of services he or she wanted, the extent to which the services met the participant’s needs, if the participant would recommand the same services to a friend, satisfaction with the amount of help received, if services helped the participant to deal more effectively with his or her problems, a general evaluation of the degree of satisfaction with the services received, and if the participant would use the same services again if needed. possible scores range from to , a higher score indicating a higher degree of satisfaction. cronbach’s alphas for internal consistency of the csq- range from . to . across studies (attkisson & i- greenfield, ). it is one of the rare general satisfaction tools that has been validated in both french and english (sabourin, pérusse, & gendreau, ). in our study, questions were asked relating to the general satisfaction considering all services received by the caregivers during the last months. chronbach’s alpha for our sample of caregivers was . . there were two independent variables. the first independent variable was caregiver support services. caregivers were asked which of the following six types of services they had received in the past months: (a) information and advice, (b) emotional support, (c) respite, (d) help with personal care tasks previously completed by the caregiver, (e) help with domestic tasks previously completed by the caregiver, and (f) other services. these services could have been provided by the clsc regular team or the sipa team, other community agencies, or purchased privately. the second independent variable was the model of care delivery: integrated care or regular clsc care. the several control variables included sociodemographic information, health, and functional status variables for caregivers and frail seniors, as well as caregiver social support and perceived burden. sociodemographic information for caregivers. this information included caregiver’s age, gender, marital status, country of birth, language spoken at home and with health professionals, religion, education, working status, type of relationship with the frail individual, coresidency status, and length of time of caregiving on a continuous basis. as type of relationship and coresidency status was expected to be highly correlated, a combined variable with three categories was created: spouse, other coresident caregiver, non coresident caregiver. for the length of time of caregiving, many caregivers did not give an exact number of years so the variable was coded on a four-point scale (fewer than years, to years, to years and equal to or more than years). sociodemographic information for frail seniors included age, gender, and whether the individual was awaiting placement in an institution. marital status, country of birth, language spoken, religion, and education were recorded mainly for descriptive purposes as they were expected to be too highly correlated to caregiver variables to be included in the analysis. i- health and functional status of caregivers and frail seniors. measurements used with both caregivers and frail seniors included number of health problems, presence of sensory or communication problems, and independence in adl and iadl. to evaluate the number of health problems, respondents were asked if they had any of the conditions included in a list of conditions taken from the established populations for epidemiologic studies of the elderly (cornoni-huntley, brook, ostfeld, taylor, & wallace, ). the conditions include high blood pressure, heart disease, circulation problems, stroke, diabetes, respiratory problems, rheumatism or arthritis (joint or bone pain), tumor or cancer, emotional problems (nervousness, depression, anxiety, or insomnia), parkinson’s disease, cataracts, glaucoma, stomach problems (gastritis, ulcer, hiatus hernia), or recent hip or leg fracture (during the past year). memory problems or alzheimer’s disease, as well as bladder and kidneys problems, were excluded from that list to test the influence of cognitive impairment and incontinence separately. the total positive answers gave a single score for the number of health problems. presence of sensory or communication problems was evaluated by asking respondents if they had no difficulty, some difficulty or a lot of difficulty recognizing people or reading, hearing, or being understood when they speak, even when using appropriate technical aids (glasses, hearing aid) if applicable. a dichotomous score was then created with those indicating a lot of difficulty in at least one of the four activities categorized as having sensory or communication problems. adl independence was measured with a version of the barthel index described by granger, albrecht, and hamilton ( ). scores can range from to , the higher score indicating total independence. iadl independence was measured using items from the older american resources and services questionnaire (fillenbaum, ). scores can range from to , the higher score indicating total independence. as an additional measure of caregiver health, caregivers’ perceived health was also recorded. it was assessed with a single question asking caregivers to rank their own health as compared to other persons of the same age group on a -point scale ( = excellent to = very poor). additional health measures of the frail seniors were presence of incontinence and cognitive impairment. presence of incontinence, included in the barthel index, was treated as a distinct variable in some analyses. it was coded on a t -point scale (no incontinence; occasional urinary or i- fecal incontinence; frequent urinary or fecal incontinence, and using catheters or having a colostomy). cognitive impairment was assessed with the short portable mental status questionnaire (pfeiffer, ). chronbach’s alpha for our sample was . . pfeiffer ( ) suggests that a score of or more errors on the questions is indicative of possible cognitive impairment for persons with at least some high school education. he suggests allowing one additional error for persons with less than high school education and one less error for those with college or university education, as well as an additional error for african americans. pfeiffer’s recommendations were used to classify participants as cognitively impaired or not, adapting the correction for ethnicity to the multiethnic context of the city of montreal, allowing one additional error for subjects who were not born in canada. quality of social support for the caregivers. this was assessed with items taken from the -item medical outcomes study social support survey (mos-sss; sherbourne & stewart, ). the items used represent of the dimensions of support included in the mos-sss scale: emotional and informational support, positive social interaction, and affectionate support. the instrumental support scale was not used because this type of support was assessed in more detail with the questions on the type of services received. possible scores for the -item scale range from to , with higher scores indicating more frequent availability of social support. chronbach’s alpha for our caregiver sample was . . subjective burden of the caregivers. this was measured with the -item burden interview (hébert, bravo, & girouard, ; zarit, orr, & zarit, ). possible scores range from to , with higher scores indicating higher level of burden. chronbach’s alpha for our caregiver sample was . . data collection data were obtained from two questionnaires administered by interview from may to october , one to the caregivers and the other to the frail seniors. respondents were interviewed at home by trained interviewers. each interview required an average of an hour i- to complete. in . % of the sample, the frail seniors’ interviews were completed by a proxy, as the individual was unable to answer because of frailty, cognitive impairment, or language barrier. in another . % of the sample, the frail seniors were helped by a relative or a friend to answer the questionnaire. to ascertain if an individual was admitted to a long- term care institution at the time of the survey or awaiting placement, the study team accessed databases from the montreal regional health board, which records every request for admission and actual admission to publicly funded institutions in montreal. analyses descriptive statistics were computed first for each of the variables, followed by bivariate analysis of the relationship between each independent and control variable and satisfaction. to better understand the influence of the different variables on caregiver satisfaction, regression analyses were performed. multiple linear regression was not appropriate, as the distribution of the satisfaction score was not normal and traditional methods of transformation did not improve the distribution. this is not unusual with satisfaction scores (see hall et al., ). instead, polytomous logistic regressions were performed with the satisfaction score categorized into a three-level outcome variable: lower satisfaction ( to ), average satisfaction ( to ), and higher satisfaction ( and ). the satisfaction cut-offs correspond approximately to one standard deviation below and above the mean for our sample. identifying factors that distinguish extreme satisfaction levels seemed important, as it is possible that dissatisfaction of the caregiver could affect negatively the continuation of care in the community for the frail senior. correlations between independent and control variables were examined, and variables were selected to avoid multicolinearity problems. continuous variables were tested for linearity. if their relationship with satisfaction was not linear, the variables were categorized. variables were grouped into two categories: caregiver and frail senior variables, and service variables. caregiver and frail senior variables were first entered in the model. as suggested by hosmer and lemeshow ( ), variables that demonstrated relationship with satisfaction at the p ≤ . level in the bivariate analysis were considered i- for entry in the regression analysis, as it is possible that variables that are weakly associated to the outcome at the bivariate level may become important predictors when taken together. a backward elimination procedure was then performed. when the model contained only variables significant at p ≤ . for at least one of the comparisons, variables previously eliminated, were reentered one by one into the analysis to see if they would be significant in a model containing fewer variables. all service variables were then entered in the model and the process repeated to generate the final model. pearson chi-square and deviance residuals statistics were used to assess the quality of the model. all analyses were conducted with spss software for windows, version . . results description of the sample sociodemographic characteristics of caregivers and frail seniors are reported in table . the caregivers in our sample were between and years of age (mean . ± . ), and somewhat more educated than the general population. consistent with other caregiver studies, they were mostly women. frail seniors were also mostly women. their mean age was . (± . ). their education level was somewhat lower than the general population, which could be expected from their older age. reflecting the higher multiethnic composition of the areas of the city where the study took place, only about half of both the caregivers and the frail seniors were born in canada. half of the sample is francophone and about % is anglophone. the remaining % had another maternal language and were, for the most part, multilingual. only a small number of frail seniors were awaiting admission to an institution prior to the interview. in half of our sample, the caregiver lived with the frail individual. more than half of the caregivers have been providing care for more than years. (insert table around here) health and functional status of the caregivers and the frail seniors are presented in table . the caregivers were in relatively good health, with . % reporting excellent or i- very good health. their mean number of health problems was . (± . ). their median scores on both the adl and the iadl scales were the maximum possible, indicating total independence for the vast majority of the caregivers. in contrast, the frail seniors had on average . (± . ) health problems. about one third ( . %) presented with important sensory problems, . % had regular incontinence problems, and . % presented with cognitive impairments. their adl score (barthel index) indicated a variety of independence levels (range - ). (insert table around here) caregiver support services table presents the percentage of caregivers who received each type of support services. the three services received most frequently were information and advice, help with personal care of the frail senior, and respite. services mentioned under the “other services” category included medical and therapeutic services for the frail senior delivered at home (n= ); help with personal care or domestic tasks of the frail individual that caregivers were not necessarily completing before (n= ); arrangements for various services such as finding a doctor, a social worker or a residence; obtaining a handicapped parking sticker (n= ); information and advice on various subjects, such as moving (n= ); other therapeutic or evaluation services for the frail senior provided outside the home (n= ); transportation (n= ); and material provided for the care of the frail senior (n= ). most of the services were received from the clsc regular team or sipa team (over % for all services except help with domestic tasks [ %] and other services [ %]). (insert table around here) correlations among some services were high. most of the caregivers who received emotional support also received information and advice (odds ratio = . , p < . ). similarly, those receiving help with iadl tasks they previously assumed for the frail senior, were likely to be receiving help with the frail senior personal care (odds ratio = . , p < . ). services highly correlated were grouped together to form four groups of i- services for further analyses: information, advice, and emotional support; respite; help with adl or iadl; and other services. caregiver satisfaction mean caregiver satisfaction score was . out of (± . ). the distribution of the satisfaction scores was skewed toward the satisfied end with . % of the caregivers (n= ) reporting perfect or almost perfect satisfaction (csq- score: or ). another caregivers ( %) were markedly less satisfied with scores of or less. mean scores for each of the questions were somewhat consistent with item (services met your needs) receiving the lowest mean score ( . out of ; ± . ) and item (would recommend same services to a friend) receiving the highest mean score ( . out of ; ± . ). factors influencing satisfaction in bivariate analysis of associations between various measures and satisfaction score, the following variables were associated with higher caregiver satisfaction (p < . ): higher caregiver iadl score; better perceived caregiver health; higher availability of social support; lower number of health problems for the frail senior; caregiver receiving information, advice or emotional support; caregiver receiving other services, and frail senior receiving integrated care. the above sociodemographic and health variables were entered in the regression analysis along with the following: caregiver gender, education, working status, type of relationship with the frail person, number of health problems, burden score, and frail senior gender, sensory and communication problems, adl score, and incontinence. models were tested with and without caregiver working status and number of health problems, as well as frail senior gender, incontinence and adl scores because of their high correlation with other variables. inclusion of these variables did not change the results. all service variables were also entered in the model at the final step of the analysis. results of the polytomous logistic regression comparing three groups of caregivers are presented in table . goodness-of-fit statistics for the polytomous logistic regression model were satisfactory. i- (insert table around here) caregivers who report higher availability of social support and an intermediate level of burden, care for a person with a lower number of health problems, and receive information, advice or emotional support were more likely to be in the highly satisfied group than in the two other groups. caregivers who were the spouse of the frail individual, had no difficulty in performing their iadl, had received other services, and who cared for a person receiving integrated care were also more likely to be in the highly satisfied group than in the lower satisfaction group. however, these later differences were not present when they were compared to those in the average satisfaction group. more specifically, comparing the higher satisfaction group to the lower satisfaction group, the following significant differences were observed. caregivers reporting no difficulty with their iadl were . times more likely to be highly satisfied. caregivers reporting an intermediate level of burden were . times more likely to be highly satisfied than those reporting a low level of burden. for each increment of on the social support scale, odds of being in the higher satisfaction group were of . . that means, for each increment of on the social support scale, the odds of being in the higher satisfaction group increase by % . spouse caregivers were . times more likely to be in the higher satisfaction group. caregivers of frail seniors with or fewer health problems were . times more likely to be in the higher satisfaction group than those caring for persons with or more health problems. controlling for the previous variables, caregivers who had received information, advice or emotional support, and those who had received other services were respectively . times and . times more likely to be in the higher satisfaction group. caregivers of seniors in the integrated care group were . times more likely to be in the highly satisfied group. when the higher satisfaction group was compared to the average satisfaction group, four of the variables mentioned above remained significant: caregiver burden, caregiver social support, number of health problems of frail seniors and caregiver having received information, advice and/or emotional support. the differences were in the same direction, i- although of a lesser magnitude. caregivers’ perceived health also became significant. caregivers who perceived themselves in excellent or very good health were . times more likely to be highly satisfied than those who perceived their health as good, fair or poor. discussion the objective of the present study was to better understand caregiver satisfaction with support services by identifying factors associated with greater satisfaction. this study focused on the global experience of caregivers with a diversity of support services. among the various factors identified, this discussion will differentiate between the individual characteristics of caregivers and frail seniors, and the characteristics of services. this is important because, as satisfaction with health care is usually high (pascoe, ; williams, ), interpretation of satisfaction surveys needs to take into account the relative satisfaction of different groups of users. wellwood et al. ( ) state that if consumer satisfaction is to be used in program evaluation, it is important to differentiate those factors predicting satisfaction that are independent of the provider from those related to the services provided. however, associations between individual characteristics and the propensity to answer questions on satisfaction more positively may also reflect the fact that certain types of services are more appropriate for certain types of clients. at the global level, our results are consistent with what has been found in the literature on satisfaction studies. our mean satisfaction score was high, and the distribution was negatively skewed with more than one quarter of the sample reporting perfect or almost perfect satisfaction. various factors were found to influence satisfaction, some related to the frail senior’s or caregiver’s characteristics and others related to the services provided. when examining these factors, our results reveal some similarities with previous findings, but also shed new light on other factors. for the factors related to the services provided, this study took a unique orientation by trying to determine which type of services are associated with greater satisfaction. our results showed that the reception of information, advice, and emotional support services increased the odds of being in the highly satisfied group. this is consistent with studies of i- caregiver satisfaction with medical care which have obtained lower satisfaction scores mainly in areas related to information exchange between health care professionals and caregivers (haley et al., ; jones & lester, ; van hout et al., ; venohr et al., ; wellwood et al., ). as well, having received services other than those usually listed as caregiver support services decreased the odds of being in the lower satisfaction group. although this finding is hard to interpret because of the wide variety of services included is this category, it may be indicative of a more personalized approach to responding to caregiver needs. the expected positive association between respite and caregiver satisfaction was not found. it is possible that among those receiving respite, some did not receive satisfactory amounts of this service. this research did not inquire about the amount of service received. help with adl or iadl was not related to caregiver satisfaction. it is apparent that services associated with increased caregiver satisfaction were those that respond to caregivers’ informational needs, rather than instrumental support needs. this observation relates to the findings of other research (browers, ; corcoran, ) that sheds light on the invisible work of the caregivers, such as planning for the future, protecting the frail senior self-image, and so forth. according to lavoie ( ), adequate support to caregivers in these intangible tasks requires more intense and flexible services that include accompaniment, information, and advice. as expected, caregivers of seniors receiving integrated care were also more likely to be highly satisfied. part of the increased satisfaction could be due to the integrated care providing access to a wider variety of services or to more appropriate services. however, our data did not show associations between integrated care and caregivers receiving any particular type of service. it is also possible that the integrated care provided a greater amount of these services. again, this research did not inquire about the amount of specific services received by the caregivers. however, we know that sipa participants, in general, received more community care (possibly including more support services for caregivers) and less institutional care than non participants (béland, bergman, lebel, et al., in press). as most seniors prefer to stay at home whenever possible, this transfer of resources from i- institutional care to community care may increase their quality of life as well as the satisfaction of their caregivers. in addition, in anecdotal qualitative data, caregivers from the integrated care group reported they felt secure, knowing that if something happened, they could easily get in touch with the case manager and there would be a rapid response. this may also explain the increased satisfaction. for the factors related to the frail senior or caregiver characteristics, caregiver assessments of their perceived health, iadl scores, burden, available social support, and relationship with the frail individual, as well as number of health problems of the frail senior, were found to be predictors of high caregiver satisfaction. the link between caregiver health variables and satisfaction is consistent with what has been reported in studies of satisfaction with medical care: users in better health are usually more satisfied (cleary & mc neil, ; hall et al., ). caregivers reporting greater availability of social support were more likely to be highly satisfied. spouse caregivers were less likely to have lower satisfaction. spouse caregivers also reported higher availability of social support (odds ratio: . , p < . ). caregiver informal support networks and formal support services can complement each other. thus, it is possible that caregivers with greater social support may have been more satisfied with the support services they received because they expected and required less, having already had some of their needs met through their informal networks. another possible explanation is that caregivers included formal support when answering some of the social support questions such as “do you have someone who understands your problems?” if this had been the case, social support could have correlated with the amount or type of services received. in our data, social support did not correlate with the receipt of any particular type of formal services. caregivers with intermediate levels of burden had increased odds of being highly satisfied, compared to those reporting lower or higher burden. a tentative explanation may be that those with low burden may not be recognized as needing services from health care professionals, and for this reason, they may receive less services. those with higher burden i- may be in need of more intensive services than what is available. our data do not permit the validation of these assumptions as we do not know the amount of services received. we can simply observe that, in this sample, burden is not correlated to receiving any particular type of services. the link between number of health problems of the frail seniors and caregiver satisfaction is also consistent with previous studies of caregiver satisfaction, although expressed differently. other researchers (durand et al., ; weissert et al., ) have found age of the frail individual, presence of disruptive behaviors (because of cognitive impairment), or higher adl impairments to be associated with lower satisfaction. these three frail senior characteristics were somewhat associated with their number of health problems. in our study, frail senior age and cognitive impairment were not associated with caregiver satisfaction. frail senior adl impairment and incontinence were not associated with caregiver satisfaction when their number of health problems was controlled. our findings suggest that the latter would be the most important factor influencing caregiver satisfaction. furthermore, the data showed that the presence of specific types of impairments seemed to be compensated at least in part by an increased proportion of caregivers receiving some type of services. for example, in our sample, a greater proportion of caregivers of cognitively impaired older adults received information, advice, and emotional support as well as respite (odds ratio . and . respectively, p < . ) than caregivers of cognitively intact seniors did, and a greater proportion of caregivers of incontinent older adults received respite (odds ratio = . , p < . ) than caregivers of continent individuals did. in contrast, an increased number of health problems of the frail seniors was not significantly associated with an increased proportion of caregivers receiving any particular type of services. contrary to what is often reported in studies of satisfaction with medical care (hall & dornan, ), we did not find any association between caregivers’ age and their satisfaction with support services. contrary to durand et al. ( ), caregivers’ cultural background was not associated with caregivers’ satisfaction. i- the study contained a number of strengths and limitations. in terms of strengths, contrary to most of the existing caregiver satisfaction studies, this research used a validated instrument (the csq- ) to measure caregiver satisfaction. this is viewed as positive, as it will allow comparison with future studies using the same instrument. as well, study participants were from a population-based sample of caregivers and older adult care recipients. in terms of limitations, the present study recorded only the type of service and not the amount of service received by the caregivers. the amount of services used may be an important factor associated with satisfaction. another limitation comes from the conceptual distinction between services directed to caregivers and services directed to the frail seniors. this service orientation was not always clear for our respondents. when asked about other services they had received as caregivers, many respondents mentioned services that, as researchers, we would have considered to be directed to the frail seniors. this limits the interpretation of our findings regarding the effects of the category “other services” on caregiver satisfaction. another point that deserves attention is the fact that, in this study, cost of services was not included in the variables under investigation, as most of the services studied were provided free of charge by the quebec public health and social services system. this is a limitation to the generalization of the findings to other contexts. in conclusion, one important function of a consumer satisfaction survey is to provide useful information to help improve service delivery in the future (wellwood et al., ; jarrott et al., ). it is our hope that, despite the study’s limitations, the findings presented here can serve such purpose. these findings indicate frail senior and caregiver characteristics which are important to control for when analyzing results of caregiver satisfaction surveys. they also demonstrate the importance of information, advice, and emotional support services to caregiver satisfaction. this should encourage every health care professional involved with frail older adults to communicate with primary caregivers whenever possible, as information appears to be very important for them. finally, the results of this study confirmed the positive effects of integrated care on caregiver satisfaction. i- notes in quebec, the vast majority of nursing homes and chronic care institutions are publicly funded. however, although health care is provided for free in these institutions, a resident’s contribution is expected to cover the housing costs. according to the census, % of the montreal population have post secondary education. immigrants make up % of the population of montreal (statistique canada, ). this results comes from: b= . , eb= . and e b= . i- table : sociodemographic characteristics of and relationships in caregiver-elder dyads caregivers frail seniors variables % or mean n % or mean n age: mean (± s.d.) . (± . ) . (± . ) gender - men - women . % . % . % . % marital status - married or marital relationship - other . % . % . % . % country of birth - canada - other . % . % . % . % religion - catholic - jewish - other (including none) . % . % . % . % . % . % language - french at home and with health professionals - english at home and with health professionals - french or english or both with health prof. - other than french or english with health prof. . % . % . % . % . % . % . % . % education - none - elementary school (grade school) - high school - technical or trade school - university . % . % . % . % . % . % . % . % . % . % working - yes - no . % . % type of relationship and co-residency - spouse - other co-resident caregiver - other non co-resident caregiver . % . % . % length of time caregiving on a continuous basis - less than years - to years - to years - years or more . % . % . % . % awaiting placement in an institution . % i- table : health and functional status of caregivers and elders caregivers frail seniors variables % or mean n % or mean n number of health problems: mean (± s.d.) . (± . ) . (± . ) presence of important sensory problems . % . % adl score: mean (± s.d.) . (± . ) . (± . ) iadl score: mean (± s.d.) . (± . ) . (± . ) perceived health - excellent - very good - good - fair - poor - very poor . % . % . % . % . % . % availability of social support: mean (± s.d.) . (± . ) burden: mean (± s.d.) burden categorized - low ( to ) - intermediate ( . to ) - high ( . to ) . (± . ) . % . % . % presence of incontinence - none - occasionally - regularly (including using a catheter or colostomy) . % . % . % presence of cognitive impairment - yes - no . % . % note: adl = activities of daily living; iadl = instrumental activities of daily living. i- table : support services received by the caregivers (n= ) type of services percentage who received this type of services information and advice . help with personal care tasks previously completed by the caregiver . respite . help with domestic tasks previously completed by the caregiver . emotional support . other services . i- table : polytomous logistic regression of caregiver satisfaction on caregiver and frail senior variables, and type of services received (n= ) odds of having higher satisfaction rather than the lower satisfaction odds of having higher satisfaction rather than average satisfaction adjusted or % ci sig. adjusted or % ci sig. caregiver perceived health good, fair, poor or very poor (reference level) . - - . - - excellent or very good . ( . , . ) . . ( . , . ) . * caregiver autonomy in iadl some difficulties ( or less / ; reference level) . - - . - - no difficulty ( / or / ) . ( . , . ) . * . ( . , . ) . caregiver burden low ( to ; reference level) . - - . - - intermediate ( . to ) . ( . , . ) . * . ( . , . ) . * high ( . to ) . ( . , . ) . . ( . , . ) . caregiver social support . ( . , . ) . * . ( . , . ) . * relationship with the frail senior other than spouse (reference level) . - - . - - spouse . ( . , . ) . * . ( . , . ) . frail senior number of health problems or more (reference level) . - - . - - or less . ( . , . ) . * . ( . , . ) . * information, advice and /or emotional support not received (reference level) . - - . - - received . ( . , . ) . * . ( . , . ) . * other services not received (reference level) . - - . - - received . ( . , . ) . * . ( . , . ) . integrated care not received (reference level) . - - . - - received . ( . , . ) . * . ( . , . ) . note: or = odds ratio, ci = confidence interval. goodness-of-fit statistics: pearson: . , p= . ; deviance: . , p= . * p ≤ . i- references attkisson, c. c., & greenfield, t. k. ( ). the client satisfaction questionnaire (csq) scales: a history of scale development and a guide for users. san francisco: university of california, department of psychiatry. bass, d. m., & noelker, l. s. ( ). the influence of family caregivers on elder's use of in-home services: an expanded conceptual framework. journal of health and social behavior, , - . bear, m., griffin, r., sauer, m., & milspaugh, c. ( ). measuring client satisfaction with home-based respite services. american journal of alzheimer's disease, ( ), - . béland, f., bergman, h., lebel, p. 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( ). outcome of comprehensive medical rehabilitation: measurement by pulses profile and the bartel index. archives of physiology & medical rehabilitation, , - . haley, w. e., clair, j. m., & saulsberry, k. ( ). family caregiver satisfaction with medical care of their demented relatives. the gerontologist, , - . hall, j., & dornan, m. ( ). patient sociodemographic characteristics predictors of satisfaction with medical care: a meta-analysis. social science and medicine, , . i- hall, j.a., feldstein, m., fretwell, m. d., rowe, j. w., & epstein, a. m. ( ). older patient’s health status and satisfaction with medical care in an hmo population. medical care, , - . hall, j. a., roter, d. l., & katz, n. r. ( ). meta-analysis of correlates of provider behavior in medical encounters. medical care, , - . hébert, r., bravo, g., & girouard, d. ( ). fidélité de la traduction française de trois instruments d'évaluation des aidants naturels de malades déments. [reliability of the french translation of three evaluation instruments for family caregivers and dementia patients]. canadian journal on aging, , - . hébert, r., carrier, r., & bilodeau, a. ( ). système de mesure de l'autonomie fonctionnelle. [functional autonomy measurement system]. lévis, québec, canada: centre hospitalier hôtel-dieu de lévis. hébert, r., carrier, r., & bilodeau, a. ( ). the functional autonomy measurement system (smaf). description and validation of an instrument for the measurement of handicaps. age & ageing, , - . henry, m. e., & capitman, j. a. ( ). finding satisfaction in adult day care: analysis of a national demonstration of dementia care and respite services. journal of applied gerontology, , - . hosmer, d.w., & lemeshow, s. ( ). applied logistic regression ( nd ed.). new-york: john wiley & sons, inc. jarrott, s. e., zarit, s. h., parris-stephens, m. a., townsend, a., & greene, r. 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( ). adult day care: findings form a national survey. baltimore, md: john hopkins univeersity press. wellwood, i., dennis, m., & warlow, c. ( ). patients' and carers' satisfaction with acute stroke management. age & ageing, , - . williams, b. ( ). patient satisfaction: a valid concept? social science and medicine, , - . zarit, s. h., orr, n. k., & zarit, j. m. ( ). the hidden victims of alzheimer's disease. new york: new york university press. annexe ii variables étudiées dans les principales recherches présentées à la recension des écrits. les tableaux qui suivent présentent la liste des variables étudiées dans les études recensées selon trois catégories: a) études auprès des centres de jour dont l’échantillon est composé d’une clientèle âgée générale (avec ou sans démence) et de leur personne de soutien b) études auprès des centres de jour dont l’échantillon est constitué de personnes de soutien de personnes atteintes de démence c) étude auprès de services connexes les abréviations utilisées dans ces tableaux sont les suivantes : légende : # : nombre de… hta : haute tension artérielle addtc : alzheimer disease diagnostic and mmse : mini- mental state evaluation treatment center program pa : personne âgée avc : accident vasculaire cérébral ps : personne de soutien avq : activité de vie quotidienne prob. : problèmes avd : activité de vie domestique p/r : par rapport brdrs : blessed-roth dementia rating scale sco : syndrome cérébral organique cj : centre de jour sympt. : symptômes hmo : health maintenance organization * : facteurs qui ont démontré une relation significative (p<, ) ‡ : facteurs pour lesquels une tendance est observée (pas statistiquement significatif car « n » petit) ii- a) : études auprès des centres de jour dont l’échantillon est composé d’une clientèle âgée générale et de leur personne de soutien auteurs variables chappell, wallace, kosloski et coll., henry & capitman, lynch et coll., baumgarten et coll., dabelko ( ) et ( ) facteurs prédisposants personnes âgées socio- démographique • âge • sexe • éducation* • profession* • présence d’un conjoint • sexe* • vit seule • a des enfants* • a un conjoint* • a des frères et sœurs • âge • âge* • sexe • âge • sexe • vit seule • vit avec conjoint* • âge* • sexe* • éducation • présence d’une ps* • vit seul • âge* • sexe • pratique religion ou pas • éducation* • nombre d’individus dans la maisonnée * • a un conjoint* personnes de soutien socio- démographique • âge* • sexe • éducation* • réseau soutien informel • âge* • sexe* • éducation • vit seule personnes âgées et personnes de soutien appartenance culturelle lien ps / pa croyances et attitudes • langue parlée • lieu de naissance (canada ou autre)* • religion • lien ps / pa * • origine ethnique* • lien ps / pa * • cohabitation ps / pa • durée d’utilisation du cj, avant l’étude* • lien ps / pa * • cohabitation ps / pa • origine ethnique * , • lien ps / pa facteurs de capacité personnels ou communautaires personnes âgées ou personnes de soutien, souvent sans distinction revenus source de financement milieu • financement externe pour cj * • revenus de la pa • revenus de la ps • coûts partagés pa / ps • revenu de la pa • service disponible dans le hmo* • revenus de la pa • financement externe pour cj * , facteurs de besoin personnes âgées santé physique • hta • acv • problèmes visuels • diabètes • maladie chronique • sco • problèmes auditifs • immobilité • santé perçue p/r aux autres du même âge • présence de plus d’un prob. de santé • hospitalisation ou hébergement temporaire dans les mois précédant le questionnaire • pauvre santé physique* • types de prob. médicaux * • prob. sensoriels • hospitalisation antérieure • nombre d’hospitalisations dans les années précédentes • risque nutritionnel* • multiples diagnostics (plus de ) ii- auteurs variables chappell, wallace, kosloski et coll., henry & capitman, lynch et coll., baumgarten et coll., dabelko ( ) et ( ) santé psychologique troubles cognitifs • dépression • alcoolisme • instabilité émotionnelle • confusion • prob. de mémoire • maladie d’alzheimer • troubles cognitifs* • dépression* • anxiété* • troubles cognitifs : mmse< * • présence de dépression ou anxiété* , • diagnostic de démence • comportements suggérant la démence capacité fonctionnelle ou raison de la référence • échelle d’avq et avd* raison de référence : • socialisation • diminuer stress ps * • surveillance état santé • besoin de thérapie • maintenir autonomie • prévenir placement* • sentiment de dépendre des autres • échelle d’avq • échelle d’avd • échelle d’avq • incontinence • durée de la dépendance due à la maladie* • échelle d’avq* • échelle d’avd* • incontinence • hébergement antérieur en institution • échelle d’avq et avd* • échelle d’avq et d’avd • incontinence • hébergement antérieur en institution personnes de soutien santé physique santé psychologique facteurs reliés au rôle de ps emploi • évaluation globale de sa santé • heures consacrées aux soins personnels • heures consacrées à aider à la gestion • durée de l’aide* • a choisi de devenir ps* • attitude vs rôle de ps • impact des prob. de comportement de la pa sur la ps • ps croit que cj est arrivé trop tard • ps a un emploi • impact sur l’emploi • fardeau* caractéristiques des services mode d’organisation du cj: caractéristiques de services connexes • fréquence de participation prévue* • coût du cj r* • coûts services auxiliaires* • insatisfait vs coût* • programme axé sur : - santé - activités de stimulation - répit + contacts avec les ps* • difficulté à obtenir d’autres services de soutien • coût pour le client* • fréquence de participation prévue • transport fourni par cj* • ratio clients/ personnel • diversité du personnel • capacité du cj (# clients) • pourcentage d’utilisation • espace en pieds carrés • programme accepte ou non les personnes avec atteinte cognitive • programme localisé dans une institution de soins de longue durée ou pas ii- b) : études auprès des centres de jour dont l’échantillon est constitué de personnes de soutien de personnes atteintes de démence auteurs variables wells et coll., beisecker et coll., zarit et coll., = analyse bivariée = analyse multivariée douglass & visconti. montoro-rodriguez et coll., mävall et thorslund, facteurs prédisposants personnes âgées socio- démographique • âge • sexe* , • âge • sexe • éducation • emploi antérieur • présence d’une ps • vit seule ou avec d’autres • a un conjoint personnes de soutien socio- démographique • âge* • sexe • éducation* , • a un conjoint • âge • sexe • éducation personnes âgées et personnes de soutien appartenance culturelle lien ps / pa croyances et attitudes • utilisation d’autres services de soutien* • origine ethnique* • lien pa/ps * , • origine ethnique • lien pa/ps • utilisation du cj déjà présente au début de la recherche* • ethnicité (blanc, noir ou latino)* • lien pa/ps • ps préfère aide formelle ou de la famille • perception de l’utilité des services de répit* • attitude négative envers services gouvernementaux • attitude négative, stigma associé à la démence • cohabitation ps / pa facteurs de capacité personnels ou communautaires personnes de soutien connaissance des services revenus source de financement milieu • revenu de ps • revenu familial ps • financement externe pour cj * • ps a déjà aidé un autre parent atteint de démence • présence de prob. financiers (ps) • type d’assurance • ps connaît l’existence des services d’aide formelle* • ps sait comment obtenir services d’aide • revenu ps* • milieu urbain ou rural ii- auteurs variables wells et coll., beisecker et coll., zarit et coll., = analyse bivariée = analyse multivariée douglass & visconti. montoro-rodriguez et coll., mävall et thorslund, facteurs de besoin personnes âgées santé physique santé psychologique troubles cognitifs capacité fonctionnelle • prob. de comportement • prob. comportement* , • échelle d’avq et avd* , • problèmes de santé physique • troubles cognitifs sévères : mmse< • comportements associés (agitation, errance, prob. familiaux, changement de personnalité) • brdrs> • échelle d’avq et avd personnes de soutien santé physique santé psychologique facteurs reliés au rôle de ps emploi • dépression‡ • anxiété ‡ • sentiments de culpabilité reliés au rôle de ps • sympt. dépressifs * • présence de colère • présence d’affects positifs* , • durée de l’aide • fardeau relié à: • sentiment de captivité * • surplus de tâches • inquiétudes et tensions • - a un emploi* • prob. médicaux • stress ou dépression • prob. conjugaux • fardeau : absence de soutien dans le rôle de ps • sympt. dépressifs • sympt. dépressifs* • temps consacré à la supervision de la pa • temps éloigné de la pa • fardeau relié à: - sentiment de captivité* - surplus de tâches* - inquiétudes et tensions* caractéristiques des services mode d’organi- sation du cj caractéristiques des services connexes • recommandation du personnel du addtc* • similarité culturelle des fournisseurs de services • transport organisé par le cj* • perception que le coût est abordable • perception que la quantité de répit offerte est suffisante • fréquence de participation ii- c) : étude auprès de services connexes auteurs variables casserta et coll., montgomery et coll., lawton et coll., ; biegel et coll., kosloski et coll., cox, facteurs prédisposants personnes âgées socio- démographiques • âge* • sexe • éducation • âge* personnes de soutien socio- démographiques • âge • sexe • éducation • nombre d’individus dans la maisonnée • nombre d’aidants secondaires • satisfaction envers ce réseau* • âge* • heures de soutien informel reçues dans l’année précédant l’étude • sexe • présence de soutien secondaire • ps trouve son réseau de soutien adéquat* • sexe • présence de soutien informel • qualité des relations dans la famille* personnes âgées ou personnes de soutien appartenance culturelle lien ps / pa croyances et attitudes • origine ethnique • lien ps / pa* • lien ps / pa • cohabitation ps / pa • heures de soutien formel reçues dans l’année précédant l’étude • lien ps / pa • perception de la difficulté à obtenir et utiliser services* • perception de la qualité des services de répit offerts par cette agence* • perception de l’utilité de ces services* • utilisation d’autres services de répit • utilisation d’autres services de soutien • origine ethnique* • lien ps / pa • utilisation cj • utilisation soins à dom. facteurs de capacité personnels ou communautaires personnes âgées ou personnes de soutien connaissance des services revenus / source de financement milieu • population de la zone de résidence • expérience antérieure dans le rôle de ps • revenus de la ps ii- auteurs variables casserta et coll., montgomery et coll., lawton et coll., ; biegel et coll., kosloski et coll., cox, facteurs de besoin personnes âgées santé physique • sévérité des problèmes autres que cognitifs santé psychologique troubles cognitifs • résultat à la functional dementia scale* • maladie d’alzheimer probable* • troubles cognitifs d’autre origine • sévérité des troubles cognitifs • présence de troubles de comportement* • importance des troubles cognitifs • importance des troubles cognitifs* • problèmes de comportement capacité fonctionnelle ou besoin perçu • échelle d’avq* • échelle d’avq* • échelle d’avd • échelle d’avq personnes de soutien santé physique • un indicateur de santé physique • santé perçue santé psychologique • symptômes dépressifs * • anxiété • dépression* facteurs reliés au rôle de ps • fardeau* • durée de l’aide • temps depuis le diagnostic • fardeau ressenti* • # d’heures consacrées aux soins* • impacts négatifs de ce rôle • sentiments de compétence vs ce rôle • sentiments positifs vs ce rôle • temps depuis le diagnostic • fardeau - émotionnel* - tensions dans la relation avec la pa • fardeau* • gains ressentis du rôle de ps* emploi • ps a un emploi • ps a un emploi caractéristiques des services caractéristiques des services de répit caractéristiques des services connexes • participe à un groupe de soutien ii- c) : étude auprès de services connexes (suite) auteurs variables cotrell & engel, pedlar et coll., kosloski et coll., kosloski et coll., = analyse bivariée = analyse multivariée li, facteurs prédisposants personnes âgées socio- démographiques • âge • âge • sexe personnes de soutien socio- démographiques • âge • sexe • présence d’un médiateur qui encourage utilisation dans le réseau formel ou informel * • soutien reçu • soutien perçu • âge • éducation • nombre de personnes de soutien secondaires • sexe • âge • sexe • présence de soutien secondaire* , • nombre de personnes ds famille • enfants à moins de heure route • âge • présence d’aidants secondaires • type d’aidants secondaires (membre de la famille ou amis)* personnes âgées ou personnes de soutien appartenance culturelle lien ps / pa croyance et attitudes • lien ps / pa * • ps préfère aide de la famille à aide formelle • s’inquiète de l’opinion des autres membres de famille • confiance envers les services d’aide* • expérience de services de mauvaise qualité • lien ps / pa • appartenance culturelle* • lien ps / pa • sentiment que la responsabilité des soins est un devoir * • utilisation d’autres services de répit • lien ps / pa* facteurs de capacité personnels ou communautaires personnes âgées ou personnes de soutien connaissance des services revenus source de financement milieu • connaissance des services* • revenus de la ps • revenu familial (ps + pa) • vétéran ii- auteurs variables cotrell & engel, pedlar et coll., kosloski et coll., kosloski et coll., = analyse bivariée = analyse multivariée li, facteurs de besoin personnes âgées santé physique • échelle de nagi* santé psychologique troubles cognitifs • affect • troubles cognitifs (orientation)* • troubles cognitifs • problèmes de comportement* • diagnostic de maladie d’alzheimer ou non • atteintes cognitives • prob de comportement • prob. de mémoire • prob. de comportement* capacité fonctionnelle • échelle d’avq* • échelle d’avq • échelle d’avd • échelle d’avq • échelle d’avd • échelles d’avq * , • échelle d’avq et avd* personnes de soutien santé physique • échelle de nagi • santé perçue • santé perçue • auto-évaluation de sa santé santé psychologique • santé mentale facteurs reliés au rôle de ps • fardeau : - limitation de ses activités - inquiétudes • fardeau • durée de l’aide • fardeau emploi • ps a un emploi* • statut d’emploi de la ps (temps plein, temps partiel, aucun emploi) • ps a un emploi • ps a un emploi caractéristiques des services caractéristiques des services de répit caractéristiques des services connexes • difficulté à obtenir et utiliser ce type de services* • transport organisé par le cj • fiabilité de l’horaire de répit* , • possibilité de choisir les temps de répit • coût du répit annexe iii guide d’entrevue entrevue individuelle avec les coordonnateurs des cinq centres de jour à l’étude les informations dont nous avons besoin concernent l’année financière - ( avril au mars ). si des changements sont survenus depuis cette période, se reporter toujours à cette période. information generale quels étaient les objectifs de votre centre de jour (si des dépliants ou autres documents répondent à cette question, pouvons-nous avoir des copies des documents) ? quels étaient les critères d’admission ou d’exclusion? À cette époque, votre centre acceptait-il les personnes qui : • présentaient des troubles cognitifs ? • présentaient des problèmes de comportement? • présentaient de l’incontinence ? • avaient besoin d’assistance pour se rendre à la toilette ? • avaient besoin d’assistance pour manger ? quel était le processus de référence et prise en charge ? qui pouvaient diriger des clients vers le centre de jour? comment se faisait l’évaluation de l’admission par le centre de jour ? iii- information generale est-ce que votre centre de jour avait une liste d’attente ? si oui, comment se faisait la gestion de la liste d’attente ? quelle était la durée moyenne d’attente pour être admis à votre centre de jour en avril ? est-ce que des plans d’intervention individualisés étaient établis pour chacun des clients du centre de jour ? si oui, à quelle fréquence étaient-ils révisés ? structure de personnel nous aimerions connaître le nombre de personnes qui travaillaient dans votre centre de jour en - . pour chacune des fonctions les plus couramment rencontrés en centre de jour, nous voulons savoir si votre centre emploi ce type d’intervenant; si oui, en quelle quantité et pour quelles tâches. personnel total du centre de jour (nombre d’équivalent temps complet) : ________ coordonnateur/trice : le coordonnateur a-t-il la responsabilité d’autres services en plus du centre de jour ? le coordonnateur assume-t-il des tâches cliniques en plus des tâches de coordonnateur ? si oui, quel type d’interventions cliniques ? quelle est sa formation ? proportion de son temps accordé aux différentes tâches : • gestion relié au centre de jour : ____h/sem. • tâches cliniques au centre de jour : ____h/sem. • autre tâches (à l’extérieur du cj) : ____h/sem. secrétaire / adjointe administrative : heures de présences au centre de jour : ____h/sem. cette personne assume-t-elle des tâches cliniques en plus des tâches de secrétariat ? si oui, quel type d’interventions cliniques ? quelle est sa formation ? proportion de son temps accordé aux différentes tâches : • soutien administratif au centre de jour : ____h/sem. • tâches cliniques au centre de jour : ____h/sem. iii- structure de personnel infirmière : présence d’infirmière(s) au centre de jour : ____h/sem. présence d’aide-infirmière(s) au centre de jour : ____h/sem. leurs principales tâches (interventions individuelles, groupes, etc.) : ergothérapie présence d’ergothérapeute(s) au centre de jour : ____h/sem. principales tâches (interventions individuelles, groupes, etc.) : physiothérapie : présence de physiothérapeute(s) au centre de jour : ____h/sem. présence de thérapeute(s) en réadaptation physique au cj : ____h/sem. principales tâches (interventions individuelles, groupes, etc.) : Éducation spécialisée : présence d’éducateur(s) spécialisé(s) au centre de jour : ____h/sem au cj principales tâches (interventions individuelles, groupes, etc.) : loisirs : (récréologue, technicien en loisirs, animateur) présence de (préciser la formation) _______________________ ____h/sem. présence de (préciser la formation) _______________________ ____h/sem. principales tâches (interventions individuelles, groupes, etc.) : iii- structure de personnel intervention psychosociale : présence de travailleur(s) social(aux) au centre de jour : ____h/sem. présence de psychologue(s) au centre de jour : ____h/sem. autre intervenant psycho-social (formation ________________) ____h/sem. autre intervenant psycho-social (formation ________________) ____h/sem. principales tâches (interventions individuelles, groupes, etc.) : assistance aux participants : présence de préposé(s) ou auxiliaire(s) familial(aux) au cj : ____h/sem. autres : ____h/sem. principales tâches (interventions individuelles, groupes, etc.) : hôtellerie : le personnel du centre de jour comprend-il des personnes affectées aux tâches associées à l’hôtellerie (préparation des repas, services aux tables, entretien ménager, etc.). ne pas inclure l’assistance un à un pour faire manger qui doit être plutôt rapportée à la section précédente (assistance aux participants) ____h/sem. transport : présence d’un chauffeur au centre de jour : ____h/sem. cette personne assume-t-elle des tâches cliniques en plus du transport de la clientèle ? si oui, quel type d’interventions cliniques ? quelle est sa formation ? proportion de son temps accordé aux différentes tâches : • transport de la clientèle : ____h/sem. • tâches cliniques au centre de jour : ____h/sem. autres : y a-t-il d’autres catégories de personnel dont nous aurions oublié de praler? autre (préciser : _________________________) ____h/sem. autre (préciser : _________________________) ____h/sem. principales tâches (interventions individuelles, groupes, etc.) : iii- capacite du centre de jour inscriptions : ____ participants / jour ou _____ participants / semaine participation réelle (moyenne): ____ participants / jour ou _____ participants / semaine pour l’année financière / : quel a été le nombre de jours-présences ? ____________ quel était le budget total de votre centre ? ____________ quel était le per diem ? ____________ les activites du centre de jour est-il possible d’avoir une copie de la grille des activités de votre centre de jour en vigueur pour - ? la durée de la participation est-elle identique pour toute la clientèle? durée_________ si elle variait en fonction de type de groupe auquel la personne était inscrite, (inscrire la durée sur la grille des activités. comment déterminez-vous à quelle activité un client va participer (place disponible, profil santé ou fonctionnel, intérêt, contraintes de transport, etc.) ? quel était la fréquence maximale de participation pour un client ? nous aimerions connaître les objectifs de chacune des activités auxquelles des participants de notre étude ont été inscrits (voir annexe propre à chacun des centres de jour), de même que les types de clients ciblés pour ces activités. quels étaient les buts de ces activités? quel type de participation exigent-elles? etc. en - , est-ce que vous avez offert des activités pour les aidants ? est-ce qu’elles apparaîtraient dans les données du logiciel jedi des participants, si leurs aidants en avaient bénéficié ? quels types d’assistance individuelle étaient fournis aux participants ? est-ce que l’assistance individuelle étaient compilée dans les données du logiciel jedi? iii- pour la periode allant du avril au mars le centre de jour était-il ouvert normalement du lundi au vendredi ? � oui � non : autre horaire : ______________________________________________________ quels étaient les heures normales d’ouverture : pour le personnel :____________________ pour les clients : ______________________ Était-ce le même horaire pour tous ? ou l’horaire variait-il selon les groupes ? si c’est le cas, joindre l’horaire des groupes pour la période de référence. pouvez-vous nous fournir la liste des jours où le cj a été fermé pour les clients (jours fériés, vacances, tempêtes, journées de planification, etc.) pendant cette période? quel était le coût normalement demandé aux usagers qui fréquentaient votre centre de jour pendant cette période ? repas _________ transport ___________ matériel ______________ autre __________ Était-il possible à votre centre de jour de réduire les coûts de repas et de transport pour ceux dont les moyens financiers sont limités ? oui __________ non __________ quelle était la durée moyenne d’un trajet en autobus ou taxi pour se rendre au cj ? comment le transport est-il organisé? qu’est-ce que vous faites pour favoriser l’assuidité de la participation au centre de jour ? est-ce que le cj appelle les clients chaque semaine pour confirmer leur présence ? le matin de la présence prévue ?___________ la veille ? ___________ non________ iii- annexe : exemple de tableau pour recueillir l’information sur les activités inscrites dans les statistiques d’activités de chaque centre de jour tr. cognitifs description : (nom de l’activité dans jedi) objectif clientèle cible pas ciblés mixte ciblés qui anime ? accueil / actualité diner anniversaire arts plastiques chant cuisine santé Échanges activités physiques marche musique et mouvements horticulture info communautaire santé santé mentale curling sports volleyball annexe iv curriculum vitae jacinthe savard formation : ph. d. en santé publique, université de montréal. (décembre , date de soutenance prévue) sujet de la thèse : l’utilisation des centres de jour par les personnes âgées en perte d’autonomie m. sc. en administration des services de santé, université de montréal, . b. sc. ergothérapie, université laval, québec, . distinctions : bourse de rédaction, faculté des études supérieures, université de montréal bourse d'études doctorales de la fondation canadienne d'ergothérapie - bourse d’études doctorales du groupe de recherche solidage - bourse d’études doctorales de la société alzheimer du canada (renouvellement) - bourse d’études doctorales de la société alzheimer du canada bourse d'études supérieures en gérontologie et gériatrie marthe-demers, de la faculté de médecine de l'université de montréal bourse d'études doctorales goldwin howland, de la fondation canadienne d'ergothérapie prix de l'association canadienne des ergothérapeutes pour les meilleurs résultats scolaires au cours de la formation universitaire en ergothérapie. expÉriences professionnelles: sept - … coordonnatrice de la formation et des services, clinique universitaire inter- professionnelle de réadaptation en soins de santé primaire, univiversité d’ottawa. - chargé de cours (temps partiel), programme d’ergothérapie, université d’ottawa – directrice du programme de premier cycle, programme d’ergothérapie, université d’ottawa. – professeur remplaçante (temps complet), programme d’ergothérapie, université d’ottawa. – coordonnatrice du centre de jour et des services de réadaptation et d'animation, centre d’accueil et clsc de rosemont (résidence robert-cliche), montréal. – chef du service d'ergothérapie, hôpital notre-dame-de-lourdes, montréal. (centre d’hébergement et de soins de longue durée) – chef de service, centre de jour de l'accueil de ville st-georges, st-georges de beauce. – ergothérapeute, unité de réadaptation et hôpital de jour, hôpital d'youville, sherbrooke iv- publications (sept dernières années): direction de livre : tremblay, l.e., savard, j., casimiro, l., & tremblay, m. (dir.). répertoire des outils d’évaluation en français pour la réadaptation. ottawa : centre franco-ontarien de ressources pédagogiques. ( ) p. articles dans des revues arbitrées : savard, j., leduc, n., lebel, p., béland, f., & bergman, h. l’utilisation des centres de jour par les personnes âgées qui présentent des incapacités. canadian journal on aging / revue canadienne du vieillissement. ( ) ( ): - . savard, j., leduc, n., lebel, p., béland, f., & bergman, h. caregiver satisfaction with support services: influence of different types of services. journal of aging and health. ( ) ( ): - . résumé de communications et présentations arbitrées : lagacé, j., bélanger-schaadt, m.a., cormier, i., savard, j., dubouloz c-j. interprofessional approach to auditory processing disorders. school conference of the american speech and audiology association, florida. (juillet ). (affiche) savard, j., metthé, l., dubouloz, c.-j. guitard, p., brasset-latulippe, a. an interprofessional university clinic: interprofessional learning at its best! congrès de l’association canadienne des ergothérapeutes. whitehorse, yukon. (juin ). (affiche) savard, j., leduc, n., lebel, p., béland, f., & bergman, h. l’utilisation des services de centre de jour par les personnes âgées. congrès de l’association canadienne des ergothérapeutes. st-jean, terre- neuve. (juillet ). (affiche) gauthier, v., st-jean, j., dubé, k., pineault, l.p., savard, j. evaluation practices of canadian francophone and anglophone occupational therapists. congrès de l’association canadienne des ergothérapeutes. st-jean, terre-neuve. (juillet ). dubouloz, c.j., savard, j., metthé, l., guitard, p., casimiro, l. enhancing interprofessional education through a rehabilitation university clinic. congrès de l’association canadienne des ergothérapeutes. st-jean, terre-neuve. (juillet ). savard, j., dubouloz, c.j., metthé, l., guitard, p. améliorer l’accessibilité aux services de réadaptation. congrès de l’association canadienne des ergothérapeutes. st-jean, terre-neuve. (juillet ). (affiche) metthé, l., dubouloz, c.j., savard, j., guitard, p., thelland, m.j. implementation strategies for an interprofessional rehabilitation university clinic in primary health care. congrès de l'association canadienne des orthophonistes et des audiologistes. moncton, n.b. (avril ). (affiche) savard, j., leduc, n., lebel, p., béland, f., & bergman, h. l’utilisation des services de centre de jour par les personnes âgées qui ont des incapacités fonctionnelles. viie congrès international francophone de gérontologie et gériatrie. québec, qc. (octobre ). (affiche) guitard, p., egan, m., tremblay, m., dubouloz, c.j., coutu-wakulczyk, g., etchevery, e., restall, g., leclair, l., savard, j. Étude pilote : fidélité test-retest de la mesure canadienne du rendement occupationnel. congrès de l’association canadienne des ergothérapeutes, montréal, qc. ( ). (affiche) iv- tremblay, m., savard, j., tremblay, l., & casimiro, l. répertoire des outils d’évaluation en français pour la réadaptation. congrès de l’association canadienne des ergothérapeutes, charlottetown, i.p.e. ( ). (affiche) dubouloz, c.j., savard, j., egan, m., beaudoin, j.p., haddad, l., martin, h., massicotte, d., macintosh, d., & vallée, c. integrating science with the human touch in a new occupational therapy master’s program. congrès de l’association canadienne des ergothérapeutes, st-john, n.b. ( ). (affiche) autres publications : savard, j. & guitard, p. promotion de l’ergothérapie : défis et opportunités. publié en trois parties dans les nouvelles du refo : ( ) ( ): - ; ( ) ( ): - et ( ) ( ). savard, j. & egan, m. l’ergothérapeute : un gestionnaire de cas idéal à domicile et dans la communauté. sommaire des études récentes. actualités ergothérapiques. ( ) ( ): - . savard, j., dubouloz, c.j., & burnett, d. une ère de changement pour la formation en réadaptation. reflets : revue ontaroise d’intervention sociale et communautaire. ( ) ( ): - . présentations sans comité de lecture : présentations sur invitation : donnelly, c., krupa, t., lee, k., lee, m., paterson, m., savard, j., stewart, d., van benthem, k. interprofessional education - acotup panel. congrès de l’association canadienne des ergothérapeutes. whitehorse, yukon. (juin ). savard j. les centres de jour pour les personnes âgées : réflexions éclairées par les données de recherche. présentation au groupe d’intérêt des centres de jour de la région de montréal. (mai ). bélanger-schaadt, m.a., lagacé, j., cormier, i., savard, j., dubouloz c-j. l’approche interprofessionnelle auprès de la clientèle pédiatrique à la clinique universitaire interprofessionnelle de réadaptation en soins de santé primaire. e journées orthophoniques du regroupement des audiologistes et orthophonistes francophones de l’ontario. ottawa, on. (avril ). savard, j. utilisation de centres de jour : recension des écrits et premiers résultats. présentation aux gestionnaires de centres de jour, à l’agence de santé de la mauricie et du centre du québec, trois-rivières. (novembre ). savard, j., & guitard, p. promotion de l’ergothérapie : défis et opportunités. présentation à l’assemblée générale annuelle du regroupement des ergothérapeutes francophones de l’ontario. (mars ). savard, j. Études sur les centres de jour : recension des écrits. présentation à la table de concertation des centres de jour de montréal-centre, montréal. (février ). autres présentations : savard, j. l’utilisation des centres de jour par les personnes âgées en perte d’autonomie. présentation au colloque du réseau québécois de recherche sur le vieillissement. montréal. (mai ). savard, j. facteurs qui influencent la satisfaction des personnes de soutien envers les services d’aide formelle qu’elles ont reçus. présentation par affiche au colloque la recherche sur le vieillissement : accomplissements et enjeux de la prochaine décennie, réseau québécois de recherche sur le vieillissement. sherbrooke. (mai ). mise à jour: - - original article the role of positive distraction in neonatal intensive care unit settings m mccuskey shepley center for health systems and design, texas a&m university, college station, tx, usa the neonatal intensive care unit (nicu) is a stressful environment for both families and caregivers. positive distraction is a means of mitigating stress. a review of research reveals that several factors in the physical environment can contribute to positive distraction, the most prominent of which are nature, art and music. design interventions that provide positive distraction and can be introduced into the nicu setting are window views of pleasant outside vistas, soothing artwork and the ability to listen to music. journal of perinatology ( ) , s – s . doi: . /sj.jp. keywords: positive distraction; design guidelines; nature; art; music; nicu introduction historically, noise, light and infection control have been the primary focus of health-care environmental design research. in the early s, however, research on a cluster of physical dimensions was initiated which, instead of addressing the mollification of the negative aspects of the environment, switched the focus to the creation and reinforcement of positive experiences. these experiences were designed to allow one to project oneself into the environment outside the healthcare setting – typically a less hostile and more nurturing space. the focus of this new research had the common theme of providing positive distraction, or the ability to allow the individual to shift focus from negative foci within the health environment to the more restorative aspects of the non-medical world. several environmental psychologists have addressed the role of positive distraction relative to human need and preference. clare cooper marcus, steven and rachel kaplan, jay appleton and roger ulrich have formulated theories regarding positive distraction in the context of their areas of specialization. for example, in roger ulrich’s theory of supportive design, he cites three significant factors which will help patients, family and staff cope with stress and, in turn, result in improved health outcomes: increased sense of control and access to privacy, social support and access to positive distractions. environmental variables that are most commonly known to contribute to positive distraction are art, access to nature and music. the literature on these topics is discussed in the following article, followed by design guidelines that provide suggestions as to how to apply the principles to real environments. literature review art/color although art has been incorporated in hospitals since the early th century, its purpose has changed. in lieu of preparing patients for death, or serving to increase donations, works of art now serve to address ‘a more holistic approach to medicine’. acknowledgement of the role of art in healthcare settings has become mainstream and discussions of the implications of this environmental intervention take place in widely circulated medical journals. if art is to be used for positive distraction, the choice of genre (e.g., modern, primitive or representational) and topic is critical. regarding genre, ulrich – noted that postoperative patients preferred representational pictures over abstract works. part of this response might be associated with the topic portrayed in the images and part associated with color choice. representational art tends to incorporate the subdued colors of the natural environment, whereas abstract art is often surprising in the color composition. ireland, warren and herringer found that anxious individuals prefer less saturated colors, therefore, color may be a contributor to the impact on the viewer. environmental competence/press theory implies that individuals will seek less challenging environments as they become stressed. when one’s internal emotional stimulation increases, a stressed individual will seek a less stimulating external environment, in order to balance the overall experience. zuckerman, ulrich and mclaughlin noted that abstract work was more often preferred by high sensation seekers. this would suggest that more representational work would be preferred by individuals seeking a less stimulating environment. if individuals in healthcare settings are trying to reduce the intensity of the visual correspondence: dr. m mccuskey shepley, center for health systems & design, texas a&m university, college station, tx - , usa. e-mail: mshepley@archmail.tamu.edu journal of perinatology ( ) , s – s r nature publishing group all rights reserved. - / $ www.nature.com/jp experience and achieve greater sensory control of their environment, they might prefer more representational work. several abstract artists have argued that abstract art is not necessarily perceived negatively all by patients. some research shows that previous exposure to art genre may influence preference, as young children do not prefer one type over the other. as such, providing patients and families choices regarding the art that is placed in their environment is an important consideration. nature kellert and wilson, steven and rachel kaplan and roger ulrich have engaged in intriguing discussions of the origin of our motivation to be associated with nature. the term ‘biophilia’ was coined by dr edward wilson, an evolutionary biologist and refers to ‘the innately emotional affiliation of human beings to other living organisms’. wilson suggests that, when the opportunity to associate with nature is limited (as is typical in health-care settings), the biophilic impulses are disrupted. steven and rachel kaplan suggest that certain preferences for nature are pervasive human qualities, and are significant because of their role in human evolution. good interactions with and understanding of nature served to enhance human survival. , adjunct to the kaplans’ theory is that preference is directly related to human perception and categorization behaviors which enable the individual to acquire more information. according to this hypothesis, nature views are most preferred when they provide information and simultaneously enable the viewer to be located at a safe (from predators) vantage point. dr ulrich cites access to nature as a primary means of distraction. ulrich studied moderately stressed individuals, and found that more positive feelings resulted when these individuals were exposed to nature scenes than when they were exposed to urban scenes. additionally, ulrich found that exposure to videos of nature were more restorative than urban scenes, after viewing a stressful movie. physiological measures included pulse, skin conductance, muscle tension and heart period. people appear to believe that access to nature may affect health outcomes. olds conducted a study in which workshop participants were asked to draw images of spaces where a sick individual might go to be healed. seventy-five percent of respondents drew scenes of the outdoors and included nature elements and vistas, light animals and beauty. the presence of windows is an extension of the concept of access to nature. windows may impact a patient’s health outcomes and psychological condition. in ulrich’s comparison of post-surgical cholecystectomy patients, he found that views of trees, as opposed to the brick wall of the adjacent building, resulted in better patient progress, less use of analgesics and shorter length of stay. in another study, patients who viewed nature pictures had less postoperative anxiety, and nature curtains with accompanying natures sounds, resulted in better bronchoscopy pain control. the impact of windows on the attentional fatigue of intensive care unit (icu) nurses has also been studied. although opposition to an increase in the number of windows may be a result of concern about increased construction costs, mckahan gathered data indicating that the average savings (when considering decreases in operational costs associated with improved health outcomes owing to views of nature) would be as high as $ per patient day. windows are more than openings in an exterior wall, and must be considered for their size and proportion. in a comparison of window and windowless hospital rooms, verderber found that windows that are very small, distant or high, were not thought of as windows at all. where windows may not be possible, access to natural light may have a positive impact. residential sunlight was found to be associated with lower frequencies of breast and colon cancers. lowered average length of stay and mortality was found in myocardial infarction patients who were located in sunny rooms. regarding interior spaces that will accommodate interaction with nature, burnett and hamilton suggest providing a space for plants and a window seat. when the patient rooms are on the ground floor, a greenhouse space can be added adjacent to the room, which should be maintained from the exterior. gardens are a primary opportunity to provide access to nature in a hospital setting. medieval hospitals were often designed around courtyards and the ancient greeks incorporated spas with water elements among their building types. the use of gardens in contemporary hospitals was less common until the st century. a set of post-occupancy evaluations of hospital gardens conducted by cooper marcus and barnes found that, of the people who used the gardens, they normally visited the space at least once per day. the vast majority went there to relax and reported positive mood changes including spiritual experiences and stress reduction. pet therapy (interaction between animals and patients in a healthcare setting) is a means of positive distraction and a form of access to nature. although the opportunities for pet therapy in a neonatal icu (nicu) setting may be limited, several studies have confirmed the benefits of this activity. interaction with pets has been found to reduce perception of pain and improve perception of quality of life. music music may elicit a psychoneuro-immunological response, although this has not been confirmed. several studies suggest that music, especially when controllable, can reduce anxiety or stress and helps some patients cope with pain. , music has been employed to reduce stress or mitigate noise in several icus – and routhieaux and tansik found that music reduced self-reported stress levels in icu waiting rooms. with regard to infants, the studies on the impact of music and mother’s heartbeat are conflicting. the presence of music and subsequent withdrawal positive distraction in nicu settings m mccuskey shepley s journal of perinatology of music may actually have complex implications. standley and moore found that on the first day of exposure to music, infants had significantly higher oxygen saturation levels, but these effects diminished on subsequent days. furthermore, babies exposed to music had significantly depressed oxygen saturation levels after the music was terminated. there has been conflicting information as to which type of music (e.g., classical, jazz, pop and alternative) might be most appropriate for healthcare settings. evidence from environmental psychology, however, would suggest that choice in selection is at least important as the genre. one of the common characteristics of patients and their families is a lack of sense of control. choice of music may enhance a sense of control and help them to achieve a healthy state of mind. minimally, music can be a distraction, and if the distraction deflects from focusing on the negative aspects of the healthcare environment, it should be considered. in the case of noisy intensive care environments, it can additionally serve to provide ‘white noise’ to mask disturbing nicu sounds. design guidelines one of the shortcomings of design research is the lack of communication between researchers and those who create environments. as such, it is important to identify the physical implications of the research. some of the guidelines in the following discussion are reported in the recommended standards provided elsewhere in this issue, others are the suggestions of this author. art regarding permanent art displays, it may be safer to provide realistic or ‘gentle’ abstract art. in situations where art displays can be changed, depending on the preference of the infant’s family or the nicu staff, options should be provided for multiple genres. the provision of an art cart from which patients select art to hang in their rooms is a tenet of the planetree philosophy, a program that supports patient-centered care. apart from genre, the subject matter is important. generally it is recommended that works of art communicate a soothing experience or provide nature content. lastly, it is important to remember that the art preferences of designers, who typically have extensive exposure to contemporary art, may be different from those of laypersons. therefore, the population who will be experiencing the art should be consulted during the selection process. nature there are three principle ways to provide access to nature. the ideal situation would be to provide nicu family members and staff with access to gardens, outdoor spaces and atria. cooper marcus and barnes provide the following guidelines regarding hospital garden design: � interior and exterior environments should contrast with one another, � construction and plant materials should account for handicapped accessibility and the potential hypersensitivity to microclimate, � spaces should provided which are imbued with qualities of safety and security, to compensate for the distressed state of the users, � sensory stimulation should allow for an external focus, � the design should allow for both psychological and physical journeys, and � areas should allow for night group interaction and soliloquy. minimally, all staff and families should have views outdoors through windows somewhere on the unit. in the case of families, they are best located in infant rooms and the waiting area. in the case of physicians and nurses, views should be provided from the lounge (where staff retreat for respite) and the nursing station (where staff spend extended periods of time). when that is not possible, natural light can be brought in through skylights, supplemented by art that includes nature images. music as mentioned above, no specific genre of music is a prescription for healing, however, music which is enjoyed by an individual may serve as a positive distraction. the design recommendations are as follows: � provide access to music or white noise for patients and their families; it is critical that the potential listener have a choice in the presence or absence of music and, when it is available, be able to select a particular type of music; an option would be to provide equipment which would allow the patient or their family to bring their own music selection, � sound levels should not disturb other patients or their families, and it is recommended that head phones be provided, and � music can be provided in staffing lounge settings, assuming it does not interfere with alarms or communication. the potential stress-reducing impacts of positive distraction are demonstrated by the research on this topic. it is likely that stress- reduction may have a role in supporting the immune system. minimally, positive distractions are desirable by nicu families and staff and will enhance satisfaction with the physical environment. although art, nature and music are options for achieving these effects, other contributors are possible and should be explored. proponents of positive distraction suggest that health-care environments cannot be fully enhanced if they are limited to mitigating the negative environmental dimensions. in addition to these important modifications, positive distractions should also be provided. positive distraction in nicu settings m mccuskey shepley s journal of perinatology references ulrich rs. effects of interior design on wellness: theory and recent scientific research. j health care inter des ; : – . behrman p. art in hospitals: why is it there and what is it for? lancet ; : – . friedrich mj. the arts of healing: how the arts can affect the health of patients. jama ; : – . ulrich rs. effects of hospital environments on patient well-being. research report series, , no. , department of psychiatry and behavioral medicine, university of trondheim: norway, . ulrich r. view through a window may influence recovery from surgery. science ; : – . ulrich r, simons r, losito b, fiorito e, miles m, zelson m. stress recovery during exposure to natural and urban environments. j environ psychol ; : – . ireland sr, warren ym, herringer lg. anxiety and color saturation preference. percept mot skills ; ( ): – . lawton p, nahemow l. ecology and the aging process. in: eisdorfer c, lawton m (eds). the psychology of adult development and aging. american psychological association: washington dc, . zuckerman m, ulrich rs, mclaughlin j. sensation seeking and reactions to nature paintings. pers indiv differ ; ( ): – . mcghee k, dzuiban c. visual preferences of preschool children for abstract and realistic paintings. percept mot skills ; ( ): – . shepley m, fournier m, mcdougal kw. healthcare environments for children and their families. kendall/hunt: dubuque, ia, . kellert s, wilson e. the biophilia hyothesis. island press: washington, dc, , p . kaplan r. the green experience. in: kaplan s, kaplan r (eds). humanscape: environments for people. duxbury press: north scituate, ma, . kaplan r, kaplan s. the experience of nature. cambridge university press: new york, . ulrich r. visual landscapes and psychological well-being. landscape res ; : – . olds a. nature: the essential healing environment. child health des ; : – . mckahan d. healing environments: healing by design – therapeutic environments for healthcare. j health care des ; : – . ulrich r, lundén o. effects of nature and abstract pictures on patients recovering from heart surgery. abstract of a poster presentation at the first international congress of behavioral medicine, uppsala, sweden, june – , . lechtzin n, withers t, devrotes a, diette g. distraction using nature sights and sounds reduces pain during flexible bronchoscopy. (abstract). paper presented at the annual meeting of the american thoracic society, may, , http://www.abstracts-on-line.com/abstracts/ats/search/re- sults.asp?num ¼ % e . ovitt ma. the effect of view of nature on attentional fatigue of intensive care unit nurses. in: nasar j, grannis p, hanyu k (eds). proceeding of the th annual conference of the environmental design research association, boston, ma. edra: oklahoma city, ok, , p . verderber s. dimensions of person-window transactions in the hospital environment. environ behav ; : – . freedman dm, dosemeci m, mcglynn k. sunlight and mortality from breast, ovarian, colon, prostate, and non-melanoma skin cancer: a composite death certificate based case-control study. occup environ med ; ( ): – . beauchemin km, hays p. dying in the dark: sunshine, gender and outcomes in myocardial infection. j r soc med ; ( ): – . burnett j, hamilton k. case study: a room in the garden – nature as a stimulus to recovery. in: hamilton k (ed). unit : a patient bed for the future. watkins hamilton ross: houston, tx, . carmichael v. hospitals turn to nature for help in healing. calif hosp ; ( ): . cooper marcus c, barnes m. gardens in healthcare facilities: uses, therapeutic benefits, and design recommendations. the center for health design: martinez, ca, . sobo ej, eng b, kassity-krich n. canine visitation (pet) therapy: pilot data on decreases in child pain perception. j holist nurs ; ( ): – . colombo g, buono md, smania k, raviola r, de leo d. pet therapy and institutionalized elderly: a study on cognitively unimpaired subjects. arch gerontol geriatr ; ( ): – . menegazzi jj, paris pm, kersteen ch, flynn b, trautman de. a randomized, controlled trial of the use of music during laceration repair. ann emerg med ; ( ): – . standley jm. music research in medical/dental treatment: meta-analysis and clinical applications. j music therapy ; xxii: – . coughlan a. nursing therapy in an icu. nurs times ; ( ): . elliott d. a review of nursing strategies to reduce patient anxiety in coronary care. part . aust crit care ; ( ): – . henry l. music therapy: a nursing intervention for the control of pain and anxiety in the icu: a review of the research literature. dimensions crit care nurs ; ( ): – . johnston k, rohaly-davis j. an introduction to music therapy: helping the oncology patient in the icu. crit care nurs q ; ( ): – . o’sullivan rj. a musical road to recovery: music in intensive care. intens care nurs ; ( ): – . routhieaux rl, tansik da. the benefits of music in hospital waiting rooms. health care superv ; ( ): – . standley jm, moore rs. therapeutic effects of music and mother’s voice on premature infants. pediatr nurs ; ( ): – , . san jose medical center. planetree: humanizing the health care experience. san jose medical center: san jose ca, . positive distraction in nicu settings m mccuskey shepley s journal of perinatology 	the role of positive distraction in neonatal intensive care unit settings 	introduction 	literature review 	art/color 	nature 	music 	design guidelines 	art 	nature 	music 	references doi: . /j.bbmt. . . poster session ii core metadata, citation and similar papers at core.ac.uk provided by elsevier - publisher connector the purpose of this poster is to describe how unc hospitals’ be- gan its patient and family support program and how this program has impacted patient outcomes and patient satisfaction. stem cell transplantation patient family caregivers: a pro- gram focused on ‘‘caring for the caregiver’’ adornetto-garcia, d.l., williams, l.a., jackson, a., norman, l., lederleitner, c., mir, m. md anderson cancer center, houston, tx. one of the most important aspects of stem cell transplantation (sct) is identifying a family caregiver to care for the patient during the transplant journey. at one of the largest transplant centers in the county, the focus is to develop a comprehensive sct caregiver program. the program is based on current caregiver literature and on the qualitative research of dr. loretta wiliams. the pro- gram is based on six themes identified in dr. williams’s research and includes commitment, expectation management, role negotia- tion, self care, new insight and role support. there are three components of the sct caregiver program. the first component is the development of a comprehensive caregiver manual. the manual will contain both education and resource in- formation focused specifically towards the family caregiver. the second component is to provide caregivers with expressive art ma- terials such as journals, photo albums and scrap books. researchers have suggested that psychological symptoms rather than physical symptoms are the most overwhelming to most caregivers and that – % suffer from these symptoms. the use of creative activities may promote feelings of well being, provide comfort, and lower anxiety. the third component is to conduct quarterly caregiver appreciation weeks. during one week of each quarter, caregivers are offered opportunities to participate in a variety of activities. the activities include massage, journaling, scrap booking and bingo. providing this recognition is our way to acknowledge the caregiver as an important person in the sct journey. in summary clinicians can provide support to family caregivers by providing them with education and expressive arts, and by acknowl- edging their unique contributions to the sct patients. the devel- opment of the sct caregiver program will provide the framework to meet the needs of the family caregiver throughout their sct journey. nursing care of the bone marrow transplant patient in sep- tic shock with acute respiratory distress syndrome mulholland, k. froedtert hospital, milwaukee, wi. purpose: provide a case study of a complex bone marrow trans- plant (bmt) patient in septic shock with acute respiratory distress syndrome (ards). to educate nurses about the pathophysiology of and nursing interventions for a patient in septic shock with ards. rationale: due to the immunocompromised nature of the bmt patient, sepsis and ards are more frequently seen in this population. the effects can be devastating and often result in multi-system organ failure and death. nurses can play a key role in patient outcomes by recognizing the signs and symptoms of sep- tic shock and ards. it is necessary for nurses to understand the cur- rent treatments and interventions to provide high quality patient care. history: the case study is based on a thirty-eight year old male diagnosed with hodgkin’s lymphoma who underwent autog- olous and allogenic bone marrow transplants. he was admitted to the bmt unit with worsening renal insufficiency. the night before he was scheduled to have a mahukar placed, he aspirated some water with his nighttime medications. throughout the night his oxygen requirements increased. while having the mahukar placed, his ox- ygen level dropped and he was intubated. interventions: the pa- tient required critical care interventions, including multiple vasopressors, frequent ventilator changes, and continuous renal re- placement therapy (crrt). he was medically paralyzed and re- quired advanced cardiac life support. implications: bmt nurses need a current knowledge base in the care of the septic and ards patient. nurses should be aware of the risk factors for sepsis and ards and be able to recognize the signs and symptoms of both conditions. it is important for nurses to be knowledgeable of the current treatment and interventions for septic shock and ards in order to take quick action in these emergency situations. successful integration of complementary therapies in a combined adult and pediatric bone marrow transplant unit mueller, k., farmer, a., talbert, g., shea, t. university of north carolina hospitals, chapel hill, nc. the university of north carolina hospitals’ bone marrow and stem cell transplant program was established in . since that time, hundreds of transplants have been performed. many changes have occurred: new regimens, new chemotherapies and other medications, and the addition of biotherapies. unfortunately, the side effects of pain and discomfort during treatment still exist. pain medications have been part of the transplant process since the beginning. morphine, hydromorphone, fentanyl, and others have helped smooth the rough road of transplant. antiemetics have been used to reduce the side effects of nausea and vomiting. recently, complementary therapies have further paved the way to a more easily tolerated transplant experience. at unc hospitals, the bone marrow and stem cell transplant program has incorporated massage therapy, relaxation and medita- tion exercises, pet therapy, aromatherapy, healing touch, singing bowls, and prayer labyrinths into its practice for those patients in- terested in combining complementary therapies with medication to decrease the intensity of pain with treatment. patients may have massages in their rooms. they may use a prayer labyrinth to become grounded and connect with their spiritual selves. they also have the opportunity to use singing bowls to focus energy. our recreational therapists guide patients into meditation exercises using guided imagery, biofeedback, diaphragmatic breathing, and relaxation tapes to calm fears and relieve discomfort. the purpose of this poster is to describe the complementary ther- apies utilized by unc’s bone marrow and stem cell transplant program and the ways in which patients undergoing transplants have benefited from these therapies. preventing falls for hematopoietic stem cell patients wood, j.m., schuldt, t.l., eilers, j. nebraska medical center, omaha, ne. in accordance with joint commission’s national patient safety fall prevention goal, we have focused on decreasing falls in our he- matopoietic stem cell (hsct) patients. the medications and side effects that accompany hsct place this population at high risk for falls. sustained low platelet counts following transplant place the patients at greater risk for life threatening injuries in the event of a fall. in attempt to decrease our fall rate, we reviewed incident reports and conducted post fall patient interviews. we identified the high risk group to be the alert and oriented patients in their ’s and ’s, most involving toileting issues. interviews determined the most frequent reasons for not calling for assistance were not ac- knowledging increased weakness and a desire to maintain personal dignity and independence with toileting. we initiated an extensive education program to help patients gain an understanding of their fall risk and the potential seriousness of related injuries. patient/fam- ily education begins pre-transplant, is followed up on by the https://core.ac.uk/display/ ?utm_source=pdf&utm_medium=banner&utm_campaign=pdf-decoration-v 	stem cell transplantation patient family caregivers: a program focused on ‘‘caring for the caregiver’’ 	nursing care of the bone marrow transplant patient in septic shock with acute respiratory distress syndrome 	successful integration of complementary therapies in a combined adult and pediatric bone marrow transplant unit 	preventing falls for hematopoietic stem cell patients running head: animal-assisted intervention impacts ebd i vancouver island university animal-assisted intervention impacts emotional behaviour disorders: a website to further professional development of using animals in schools by anna canby b.a., b.ed. an applied project submitted in partial fulfillment of the requirements for the degree of master of education in special education faculty of education © anna canby, all rights reserved. this project may not be reproduced in whole or in part, by photocopy or other means, without permission of the author. animal-assisted intervention impacts ebd ii abstract although animal-assisted intervention (aai) is not a new intervention type for the rehabilitation of individuals (both physically and emotionally), it is a research topic that deserves more focus, especially in school settings. this project contains information about what emotional behavioural disorders (ebd) are, the need and importance of self- regulation, terminology within animal-assisted intervention, current research, and ways to implement this type of intervention effectively. the main goals of the professional development day in the form of a website is to provide a resource for educators who have been interested in such an intervention but were unsure as to how to approach it and are seeking more in-depth information. this website also provides local supports that can assist a teacher on their journey of animal-assisted intervention. the website was created in weebly and can be found at: https://animalassistedintervention.weebly.com https://animalassistedintervention.weebly.com/ animal-assisted intervention impacts ebd iii acknowledgements this work would not have been completed without the support and encouragement of family, friends, colleagues, and mentors. i am forever grateful for the community i had throughout the whole process. thank you to my husband, john, for taking on extra roles and responsibilities to ensure our family was cared for and our home maintained in order to provide me with time and space. to my sweet son george, though your naps were short, i thank you for the pockets of time you gave this mom and the motivation you provided me with to be an example for you. thank you, tari, for always being available to listen to my thoughts and ideas regarding this project and providing valuable feedback whenever needed. simon and allyssa, your support, encouragement, and laughter were invaluable through this entire experience. thank you, janet, for your mentorship, guidance and supervision. i am so grateful for your investment in my journey. lastly, for the encouragement timothy : brings, “for the spirit god gave us does not make us timid, but gives us power and love and self-discipline.” anna canby animal-assisted intervention impacts ebd iv table of contents abstract ................................................................................................................................................................. ii acknowledgements .................................................................................................................................... iii chapter one: introduction .................................................................................................................. vi current challenges within the classroom ....................................................................................................vi emotional behavioural disorders ...................................................................................................................... vii categories of ebd.............................................................................................................................................................. ix gender dysphoria. ................................................................................................................................................................................. ix substance-related and addictive disorders. ................................................................................................................................. ix depressive disorders. ........................................................................................................................................................................... ix disruptive, impulse-control, and conduct disorders. ............................................................................................................... ix feeding and eating disorders. ............................................................................................................................................................ x elimination disorders............................................................................................................................................................................. x obsessive-compulsive disorders. ....................................................................................................................................................... x trauma disorders and stressor-related disorders. ..................................................................................................................... x anxiety disorders. .................................................................................................................................................................................... x neurodevelopmental disorders. ......................................................................................................................................................... x self-regulation ..................................................................................................................................................................... xi animal therapy and support .................................................................................................................................... xii statement of the problem ........................................................................................................................................ xiii personal context ........................................................................................................................................................... xiv overview of project ....................................................................................................................................................... xv project structure ................................................................................................................................................................. xv critical terms ................................................................................................................................................................... xvi animal assisted interventions (aai). ....................................................................................................................... xvi assisted animal therapy (aat) and pet therapy .................................................................................................. xvi companion therapy. ...................................................................................................................................................... xvii service animal. ................................................................................................................................................................ xvii emotional support animal. ......................................................................................................................................... xvii therapy animals. ............................................................................................................................................................ xvii animal assisted activities (aaa). ............................................................................................................................. xvii psychiatric service animal (psa) ............................................................................................................................. xvii summary ............................................................................................................................................................................... xviii chapter two: literature review ................................................................................................... xx introduction ......................................................................................................................................................................... xx attachment theory ......................................................................................................................................................... xx benefits of animal assisted therapy ................................................................................................................ xxii current research on animal assisted therapy ....................................................................................... xxiii therapy goals and mental wellness. ....................................................................................................................... xxiv utilization by mental health professionals. ........................................................................................................ xxvii animal-assisted intervention in schools. .............................................................................................................. xxix conclusion of studies. ................................................................................................................................................ xxxiv gaps in the field ........................................................................................................................................................... xxxiv contributions to the field .................................................................................................................................... xxxv summary .............................................................................................................................................................................. xxxv chapter three: overview of project ................................................................................ xxxvii introduction ..................................................................................................................................................................xxxvii the project .....................................................................................................................................................................xxxvii animal-assisted intervention impacts ebd v best practices of professional development ...................................................................................... xxxviii professional development used in foreign countries. ................................................................................. xxxviii professional development: knowledge in practice. ........................................................................................ xxxix professional development: review of literature. .................................................................................................... xl overview and implementation .............................................................................................................................. xlii the purpose of this project ................................................................................................................................... xliv website design ................................................................................................................................................................. xliv home .................................................................................................................................................................................... xlv ebd & self-regulation ................................................................................................................................................... xlv aat ....................................................................................................................................................................................... xlv more...................................................................................................................................................................................... xlv additional resources. ........................................................................................................................................................................ xlv research. ................................................................................................................................................................................................. xlv research in education. ...................................................................................................................................................................... xlvi research in wellness. ........................................................................................................................................................................ xlvi implementation. ................................................................................................................................................................................... xlvi support tools & videos. .................................................................................................................................................................... xlvi resources & programs. .................................................................................................................................................................... xlvi references. ............................................................................................................................................................................................ xlvi implementation of professional development day.............................................................................. xlvi chapter four: reflection and conclusions .................................................................. xlviii introduction ................................................................................................................................................................... xlviii successes of the project ........................................................................................................................................ xlviii limitations of the project ..................................................................................................................................... xlix implications for what i have learned ................................................................................................................ l conclusion .............................................................................................................................................................................. li references .......................................................................................................................................................... lii appendix a ....................................................................................................................................................... lviii animal-assisted intervention impacts ebd vi chapter one: introduction “when people face real adversity, affection from a pet takes on new meaning (beck & katcher, , p. ).” this chapter highlights my inspiration for a graduate applied project regarding the topic animal-assisted intervention to support emotional behavioural disorders. this chapter begins by introducing and defining emotional behavioural disorders (ebd), self-regulation, and animal-assisted intervention, which provide the foundation for the project. next, the chapter explains the current problem in today’s classroom and how my project will address these concerns. i share my personal connections to the topic with the impacts of my travels overseas, where i was first exposed to animal therapy within a school setting. i reflect on my teaching years thus far and the common challenges i have encountered in the classroom. a brief overview of the project is provided and will be expanded on in chapter three. finally, this chapter defines critical terms used in animal- assisted intervention to ensure consistency and understanding throughout the paper. current challenges within the classroom the changing classroom environment has many different factors regarding its evolution. it is only natural for educators to change their practice according to the evolving classroom. the need for differentiation, and looking towards varying interventions is driven by the following explanation by tomlinson ( ): there was a time when school was not the diverse mix it is today. children with physical and severe cognitive challenges stayed home. children from poor homes, including new immigrants, worked in factories or at other jobs to help support the family. farm children worked the fields and only attended animal-assisted intervention impacts ebd vii school during the seasons when crops didn’t require planting or harvesting. girls often were excluded from advanced education because of the perception that their natural role- to marry, raise children, and run a household- did not require much academic study. children of the very rich often had tutors or went to exclusive boarding schools. (p. ) historically, it was typical to expect students to have two parents, one who was present when the child went to school and came home from school. this dynamic is changing, where parents or guardians are both often working due to living standards. this can complicate the lives of children and increase their engagement in cyberspace. today, a childhood experience is just as unique as their current needs, creating a classroom full of diverse backgrounds, needs, experiences, and expectations (tomlinson, ). children with emotional behavioural disorders can be found in all types of classrooms and schools throughout the united states, regardless of socioeconomic background, and are affected by the homes they come from (tomlinson, ). classrooms in canada are just as diverse and display similar dynamics and pressures. educating students with increasingly varied backgrounds and needs requires educators to utilize a variety of different strategies to ensure all students’ needs are met. with the needs of students growing and diversifying so are the pressures for educators to find interventions, strategies, and supports to aid their practice. emotional behavioural disorders in general, special education teachers have full caseloads of students with designations, but there remain many classes with a diverse range of student needs, including emotional behavioural disorders (ebd). many students experience the animal-assisted intervention impacts ebd viii challenges of ebd and educators are faced with the task of supporting these challenges in the regular classroom without adequate resources or supports in place. forness, kim, and walker ( ) state, “there are unfortunately far more children with moderate to severe ebd defined in this way than ever make it into special education” (p. ). to qualify for an ebd can be a narrow process, as it has to affect the educational performance of a student (forness, freeman, paparella, kauffman & walker, ). educational performance is not defined in regulations and can be interpreted in a variety of ways (forness et al., ). this can limit eligibility to children whose disorder affects their academic achievement in a negative way but not necessarily to those who struggle with their coping skills (forness et al., ). students may suffer from an ebd like depression, where it does not present itself daily but goes through waves of appearances in the child’s life. due to this, there is huge confusion as to which students are in need, which are defiant, and which are truly coping. in one quote, forness et al. ( ) express how identifying, acknowledging, and educating a student with an ebd can be challenging for a general classroom teacher: in conclusion, we would like to note that many general education teachers and administrators still seem to instinctively view classroom externalizing behaviour as totally willful and cause for disciplinary referrals rather than as symptoms of adhd… on the other hand, they frequently tend to view lack of involvement in certain instructional activities as a learning problem rather than as potential symptoms of depression or anxiety disorders. (p. ) before general education teachers can provide appropriate supports, a better understanding of the different categories of ebd is crucial. consulting with trained animal-assisted intervention impacts ebd ix itinerant staff, like the school psychologist, counselor, and/or behaviour specialist is best practice when also seeking support for programming. categories of ebd. emotional behavioural disorders can be categorized into the subheadings: gender dysphoria, substance-related and addictive disorders, depressive disorders, disruptive, impulse-control, and conduct disorders, feeding and eating disorders, elimination disorders, obsessive-compulsive disorders, trauma disorders, anxiety disorders, and neurodevelopmental disorders. within each disorder there are subcategories that have distinguishable characteristics that are outlined in the dsm-v. the dsm-v is the most widely accepted definition of each category of mental illness. each disorder is unique and can be summarized by the diagnostic and statistical manual of mental disorders ( th ed.; dsm-v; american psychiatric association, ) as the following: gender dysphoria. this is a conflict an individual has between their assigned gender and the gender they experience or express (p. ). substance-related and addictive disorders. an individual who continues using substances even though there are substance-related problems (p. ). depressive disorders. “…the presence of sad, empty, or irritable mood, accompanied by somatic and cognitive changes that significantly affect the individual’s capacity to function. what differs among them are issues of duration, timing, or presumed etiology” (p. ). disruptive, impulse-control, and conduct disorders. these are conditions that pose challenges in self-control of emotions and behaviours. these problems are formed through acts like aggression, and destruction of property against others (p. ). animal-assisted intervention impacts ebd x feeding and eating disorders. this disorder is the persistent eating or eating- related behaviour that impairs physical health and/or psychosocial functioning (p. ). elimination disorders. this disorder is characterized by the inappropriate elimination of urine or feces in inappropriate places; typically diagnosed in childhood or adolescence (p. ). obsessive-compulsive disorders. these disorders are defined as those centered around obsessions and/or compulsions. obsessions are characterized as persistent thoughts, urges, or images that are unwanted whereas compulsions are repetitive behaviours or mental acts as a response to an obsession (p. ). trauma disorders and stressor-related disorders. exposure to a traumatic or stressful event is a necessary diagnostic criterion for an individual to have such a disorder (p. ). anxiety disorders. these are disorders that include those that share features of excessive fear and anxiety. this disorder is more serious than typical fear or anxiety experienced on a normative level; this is when both feelings persist longer than developmentally appropriate periods, six months or more (p. ). neurodevelopmental disorders. disorders that typically form early in development and can impair the child’s personal, social, academic and/or occupational functioning (p. ). understanding that these disorders branch out into more specific designations brings insight into the fact that many of our children may be dealing with complicated needs that impact their wellness, ability to self-regulate, and engage in school activities. there are several possible reasons why the numbers of adults and children reporting that animal-assisted intervention impacts ebd xi they are personally impacted by a form of mental illness is increasing. for example, bergen ( ) highlights that it is becoming more acceptable to speak about them, life transitions are becoming more demanding, and services are being provided in which those who struggle with an ebd are becoming more successful, as a couple of reasons. it is important to have strategies and interventions in place to promote students’ wellness and academic success through self-regulation. self-regulation. self-regulation is the ability to manage thoughts and emotions in a healthy, balanced way, while maintaining a sense of flexibility to modify reactions and responses to change (woltering & shi, ). in many studies focusing on self- regulation, there is a link between the ability to self-regulate and better academic performances in students (woltering & shi, ). when learning about the urgent needs of those with an ebd, it is important to understand that the skillset of self-regulation is a necessity. improving self-regulation for students is a special education issue because without such skills, their ability to learn, cope with their emotions, and adjust to everyday changes, are negatively affected. special education helps target student needs; when students do not receive special education services, they often struggle within the regular classroom environment and their teachers are unprepared for their needs. by understanding the need to educate students on self-regulation through various programs, lessons and interventions, educators are helping young people develop skills and strategies to overcome and manage stressors, increasing focus, and allowing students to have more socially acceptable behaviours (woltering & shi, ). cook and schirmer ( ) state, animal-assisted intervention impacts ebd xii in response, special education scholars have endeavored to show that special education, although it cannot and does not produce optimal outcomes for all students with disabilities, generally provides an added value to the education opportunities and outcomes of the students it serves. (p. ) the added value for some students could be basic social skills and coping skills that they will need for everyday life. animal-assisted intervention (aai) can be a viable avenue to fulfill the added value within special education. animal therapy and support a review of literature demonstrates that interventions to promote self-regulation of emotions and behaviour exist and come in a variety of forms (woltering & shi, ). some of these self-regulation interventions use animal-assisted social skills training within education and have shown positive impacts on academic skills (daly & suggs, ; linder, mueller, gibbs, alper, & freeman, ; beetz, ). a study by bassette and taber-doughty ( ) used a dog visitation program to determine effects of reading. students in this study experienced increased on-task behaviour as well as improvements on their reading scores. there have been other studies that have also shown physiological, social, and emotional benefits (friesen, ). the impact of something that is non-judgmental, present, and calm, can allow a student enough room to take risks in their learning, and ease their anxiety. companion animal therapy, a term founded by levinson ( ) explains how touch and attachment behaviour release endorphins alleviating feelings of anxiety and forming foundations of social attachment. this can be achieved simply by petting an animal, taking the focus away from one’s self, and providing feelings of relaxation and acceptance. this chemical animal-assisted intervention impacts ebd xiii reaction is a great explanation to how aai could impact students. benefits of animal therapies are no mystery to many people; however, the unique benefits towards those with mental or psychiatric disorders extend to the physiological, psychological, and emotional health categories (bergen, ). animal-assisted intervention is not meant to be used exclusively on its own; it has been shown to be effective in accompaniment with other types of interventions and is in fact encouraged. one study used a mindfulness program with nature and animal-assisted mindfulness training (schramm, hediger, & lang, ). patients became more skilled in their mindfulness, decreased negative thoughts, and stayed committed to the program. nature and animal-assisted interventions can fit well with other types of teachings, much like using dogs to encourage engagement in reading, but not replace the lesson itself. the inclusion of animals in various roles has proven to show success, whether the goal is to commit to a program, increase engagement or motivation, or provide a setting of acceptance (barker & dawson, ; schramm et al., ; bassette & taber-doughty, ). many educators aren’t trained in how to use animals in the classroom and having more information would help fill this gap in knowledge. statement of the problem although animal-assisted intervention has shown benefits that could be applied within the classroom, there are problems i encounter within my own practice; weaving such an intervention into my practice and student learning. questions like: how do i properly and meaningfully introduce this into my class? what if a student or students are afraid of this type of animal? what if i have a student with specific allergies? these are questions i address in my project, to clarify these for other educators. this lack of animal-assisted intervention impacts ebd xiv knowledge regarding the use of animal-assisted intervention within education is common amongst many educators. daly and suggs ( ) researched the impacts of pet therapy on students. results showed that much of the experience teachers had with such a therapy was limited to a class pet, and the teachers were unsure as to what socio-emotional impact it had on their students. the study also shared that many of the teachers were interested in the idea of having an animal play a role in the classroom yet were unsure as to how this could be achieved. animal support has begun to take on more roles within the education system (bergen, ). the increase in demand and curiosities has also created more confusion of what it is, what it is for, why it is important, and proper terminology. personal context during the winter of , i traveled to rwanda, africa to volunteer at a preschool with students ranging from ages two to eight years old. one of the main missions of the preschool was to help show the children a new way of being. their parents or guardians had just survived the genocide and were traumatized. as a result, they passed on survival skills to their children, teaching them to hurt animals and fear one another. the children were growing up without learning any coping skills. recognizing the need for change, this preschool began teaching the children how to be gentle and kind within their curriculum. animals lived on the preschool property, and the children were responsible for feeding the animals, caring for them, even delivering their babies! the thought was that if they could learn to be gentle and care for something as vulnerable as an animal, they could transfer those skills to their own community, becoming valuable members for each other and themselves. children were forming connections with the animals, felt safe within their community, and saw value in one another. animal-assisted intervention impacts ebd xv in my short career within education, i have encountered many classrooms with students that struggle with emotional behavioural disorders (ebd), such as anxiety, depression, or trauma, as well as with pervasive disorders, such as autism spectrum disorder (asd). i wonder if providing children in canada with opportunities to nurture animals will have similar impacts as those of the preschool children in rwanda. when speaking with colleagues and mentors, they always comment on their growing concern for the classes they are teaching year after year; how behaviours are becoming less regulated and their skills for classroom management and interventions are no longer appropriate for the class they have. the lack of appropriate interventions provided by the teacher impacts the mental health of students, their social interactions, and their success in learning. overview of project my first-hand experience seeing the benefits of animal-assisted intervention with preschool children in rwanda, as well as the increase in social and behavioural needs of students within education today, has led to the creation of an animal-assisted intervention resource for educators. i created a resource to support teachers as they introduce animals in the classroom to support the needs of students with emotional behavioural disorders. this resource, which will be explained in detail in chapter three, offers practical ways in which teachers can incorporate animal-assisted intervention. it is presented in a website format and can be utilized by all educators who want to have animal-assisted interventions as part of their classroom. project structure. i chose to do a professional development day as the means to provide teachers with resources and information as to how to implement animal-assisted animal-assisted intervention impacts ebd xvi intervention. the presentation is offered through a website, which enables individuals to refer to the information later, during their own time, or deliver the presentation material to their colleagues. information included covers background knowledge (what are emotional behavioural disorders and how it relates to the classroom), roles in which animals have been used for mental health and how it has been used in the classroom, and provincial and local resources and contacts available to teachers. i have included picture book resources that teachers can use as they introduce the idea to students working alongside animals as well as two youtube clips that share knowledge on trauma and assisted-animal therapy. critical terms when it comes to animal-based instruction, there are many terms used to describe different types of interventions, roles, or titles of an animal. below are key terms used throughout my paper as well as the project resource. for ease of understanding, i use the term animal-assisted intervention as an umbrella term meaning any type of animal intervention used for the purpose of education and all needs within that. animal assisted interventions (aai). this is used as an umbrella term by the american veterinary medical association (avma) to describe animals that are used to play a part in the therapeutic processes (andreasen, stella, wilkison, moser, hoelzel & hendricks, ). assisted animal therapy (aat) and pet therapy. this is a goal-directed intervention where the animal is used within the intervention process and is designed to improve physical, social, emotional, and cognitive function (andreasen et al., ; kirnan, siminerio & wong, ; nikolskaya, ). animal-assisted intervention impacts ebd xvii companion therapy. this term is coined by levinson ( ) describing how touch and attachment behaviour release endorphins alleviating feelings of anxiety and forming foundations of social attachment. this can be achieved simply by petting an animal. this is an old term and not commonly used anymore. service animal. these animals are specifically trained to help individuals with a disability (ie guide dog) and are owned by the same individual it is aiding (andreasen et al., ). emotional support animal. patients request a letter of support from their therapist, which allows them to take their pet to any non-designated pet areas. the letter states the individual is psychologically disabled and is unable to be stable without the presence of the animal (younggren, boisvert, & boness, ). therapy animals. these animals are brought into the therapy session by a handler or owner, who is not the client, and go through a different type of training than service animals (andreasen et al., ). the therapist or handler, who are sometimes not the same person either, owns therapy animals. due to ethical and safety reasons, the handler may be included in the session if the therapist is not trained as a handler. animal assisted activities (aaa). this is in reference to when the animal is being used for the purpose as a companion and provides opportunities of motivation, education or recreation to enhance quality of life, but it is not tailored to a specific individual like aat (andreasen et al., ; kirnan et al., ). psychiatric service animal (psa). this is a type of service animal that is trained to perform tasks that are helpful to individuals with disabilities to detect psychiatric episodes or lessen them (younggren et al., ). this could be reminding individuals to animal-assisted intervention impacts ebd xviii take their medication, giving safety checks of rooms, turning lights on for those with anxiety, interrupting self-mutilation, and anticipating epileptic seizures. summary in summary, animal-assisted intervention has shown positive impacts within the lives of individuals who have shown a need for it. like many interventions, there are appropriate times and places to use animal-assisted interventions, as well as, a need for education and resources to show how the intervention can be used. emotional behavioural disorders are experienced by so many students, which challenge educators in the classroom. having interventions that can promote self-regulation in students is one way supports can be provided for educators. aai has shown to be an effective intervention that promotes self-regulation, mental wellness, and academic improvement. this chapter highlighted key terms used within aai as a way to clarify the purpose of each animal-assisted role. my time in rwanda was an experience that created a passion for animals and allowed me to witness the impacts animals can have on the emotional well-being of a child. with my experience so far in the classroom, i see a need for different supports that can aid the educator and positively impact the students. with the changing dynamics of family structure, and diverse childhood experiences, the needs of a child within a classroom are unique and complicated. my project is meant to be a resource for teachers who are beginning to educate themselves on using animals in the classroom. the website can be used as a professional development presentation, or a personal resource. the remainder of this paper is broken into three chapters. chapter two focuses on a comprehensive literature review on animal-assisted interventions and therapies, chapter three outlines the creation and implementation of the project, and animal-assisted intervention impacts ebd xix chapter four offers my reflections on the research process and overall conclusions about the project. animal-assisted intervention impacts ebd xx chapter two: literature review “when petting animals, a person’s face changes: the lines of tension smooth; the smile becomes less forced, more relaxed and open…(beck & katcher, , p. ).” introduction the purpose of this literature review is to identify the research that exists on the use of animal therapies and how it can relate to impacts on emotional behavioural disorders (ebd). all the research studies in this review provide some positive impacts within their results. however, there remain gaps in knowledge regarding how to best implement such a therapy, understanding how outside factors can change the results, and that the human connection is just as important as the animal connection. attachment theory is explored as it is one of the main expressed benefits of animal therapy. this review explores the research that exists, all within therapy goals and mental wellness, animal therapy used by professionals, and animal therapy research within school settings. each section provides a description of various studies and an explanation of the impacts. due to gaps that exist within each study, the reasons and significance for creating my project are apparent. attachment theory a common theory that coincides with animal therapies and the benefits they bring is attachment theory. attachment theory is based around having a strong emotional and physical attachment to a main person in their life, an important part to personal development. benefits within animal-assisted interventions are based on the safe attachment formed when students bond with animals (bassette & taber-doughty, ). it is thought that our schemas of interpersonal relationships are based on our early animal-assisted intervention impacts ebd xxi attachment figures. there are three attachment styles: attachment security, anxiety, and avoidance. securely attached individuals have a positive outlook on themselves, those around them, and their relationships. they trust others and believe they will be supported when they need to be. insecurely attached individuals (considering anxiety and avoidance are on a continuum) take on anxiety or avoidance (lavy, ). anxious attachment can have an obsessive need for closeness, have negative self-talk, and fear rejection. avoidant attached individuals rely on themselves, struggle to develop intimacy or a dependence on others, and have a negative appraisal of others (lavy, ). within attachment theory, the main message being expressed is that human beings are contact- seeking and our well-being depends a great deal on the state of our relationships (gomez, ). levinson ( ) is considered the pioneer for animal assisted therapy (aat), something he refers to as human/companion animal therapy. levinson ( ) also connected the idea of attachment theory with human/companion theory, stating how the act of touch (like the act of petting an animal), can release endorphins, which helps promote healthy attachment. this would help to explain why children often feel accepted by animals. he gives a theoretical discussion showing how psychotherapy is effective when there is either touch or comfort included as human or animal companionship. through his studies, levinson concluded that human/companion animal therapy is an effective tool through touch, releasing endorphins, alleviating anxiety. this forms a foundation for social attachment, and attachment behaviour, where the companionship is initiated by attachment behaviour. through levinson’s studies, he concluded that simply petting an animal takes their focus away from themselves, which can be used to assist animal-assisted intervention impacts ebd xxii therapy by helping to build rapport. however, levinson cautions that this does not function the same as or replace the role of a therapist. benefits of animal assisted therapy the benefits of animal-assisted therapy (aat) are enough to consider it as a viable intervention to an individual student or group of students who struggle with their emotional balance and require self-regulation. aat has experienced an increase in development over the last years and has seen a promotion of the therapeutic side (senent, ). aat shares a close relationship to attachment theory. a connection is made between companion (the animal) and human. this attachment is formed through touch (the act of petting), which releases endorphins, establishing a healthy attachment. healthy attachment is important because it forms the outlook an individual has on themselves and onto others. the most common benefits found with aat on individuals are the emotional benefits, such as reduced anxiety or depressive symptoms (dietz & pennings, ; friesen, ; barker & dawson, ). in addition to these benefits are changes to our emotional state, including increased motivation and engagement, increased positive outlook on self, and ability to stay committed to a task or program. these benefits directly assist students in their ability to self-regulate because they develop a stronger emotional foundation to provide perspective and self-reflection. benefits of aat cannot be assumed just because an animal is placed within a situation. benefits are obtained through thoughtful and intentional placement, whether it is directed or undirected (nikolskaya, ). compatibility of personalities of both the child or children and the animal need to be considered. physical placement, breed, and type of animal are also important. if these conditions can be successful, the benefits could be animal-assisted intervention impacts ebd xxiii psychological, psychotherapeutic, rehabilitative, and lead to increased confidence and ability to communicate (nikolskaya, ). it is not enough to know that aat can provide benefits to individuals, it is also important to understand the why. the why in any situation is diverse and complicated given the variety of circumstances for each child. in trauma, the brain develops in a way where the body is made to respond as if danger still exists (jones, ). it is expected that this type of distraction and distress would make the learning process difficult. not only is learning affected but so is the ability to regulate emotions and create and maintain healthy relationships. having an access point where children can realistically work on these skills is imperative. another benefit for the use of aat is that it is rarely used on its own but works well in partnership with other programs (jones, ; schramm et al., ). current research on animal assisted therapy what is known about current research on animal-assisted therapies is that animal support programs and interventions have been used and researched in various ways (barker & dawson, ; bassette & taber-doughty, ; daly & suggs, ; nimer & lundahl, ). many of the studies report findings that demonstrate increased dedication to the task at hand, feelings of acceptance, or self-awareness (schramm et al., ; bassette & taber-doughty, ). the studies in this literature review have varying focuses regarding animal-assisted instruction and anxiety. each study contributes a different perspective of how such interventions could be useful. these studies provide insights into how aat has been used for different purposes (to increase motivation, for social attachment, alleviate depression, increase reading levels) and in varying ways (in animal-assisted intervention impacts ebd xxiv partnership with other skills training, in a school setting, or with psychotherapy). understanding current research provides perspective of how aat has been or can be useful, ways it supports individuals, and where knowledge is still limited. daly and suggs ( ) conducted a research study to determine the values and benefits that animals provide children. daly and suggs ( ) utilized an adapted survey on pet animals in the classroom with additional details to obtain information on attitudes and experiences with pets. participants were comprised of elementary teachers with a variety of roles within the school, including librarians and special education teachers. the main results of the study showed that most of the teachers liked pets, but that the majority did not have a classroom pet and relied on pet visits. most classrooms that had pets were aquarium-based ones. the most common experiences with the classroom pet were caring for the pet and involving the students with this (day & suggs, ). the study showed strong connections between animal and child through anecdotal evidence. this study showed the perspective of the educator and what practical interventions teachers are choosing to do to incorporate animal-assisted intervention to teach empathy. therapy goals and mental wellness. many studies focused specifically on how therapy goals and mental wellness could be improved by animal-assisted therapy (barker & dawson, ; nimer & lundahl, ; schramm & lang, ). the purpose of the study conducted by barker and dawson ( ) was to focus on animal-assisted therapy with the aim of facilitating patient’s progress toward therapeutic goals. the study included patients who were referred for therapeutic recreation sessions. a pre- and post-treatment crossover study design was used to compare the effects of a single animal- assisted therapy session with a single regularly scheduled therapeutic recreation session. animal-assisted intervention impacts ebd xxv before and after each session, the patients reported on a rating scale to assess their current anxiety level. patients selected to do the study were deemed stable enough to participate with group activities. the main results of this study showed a notable reduction in anxiety scores after an animal-therapy session. clients were asked questions regarding their anxiety before and after the sessions. this provided immediate perspective on how the participants felt with the animal therapy sessions. this study assessed immediate impacts on anxiety and demonstrated the need for a long-term study. a meta-analysis by nimer and lundahl ( ) focused on how aat improves autism spectrum disorder symptoms, medial difficulties, behavioural problems, and emotional well-being. half of the studies contained a control or comparison group. the main results of this research study showed that studies that used control groups were not as different from those that did not use them in categories of well-being and behavioural outcomes. this provides insight into the fact that outside factors (busyness of a room, the handler, certain events taking place) do not necessarily have a negative impact on results than those with comparison groups. this could reflect the effectiveness of aat. benefits are experienced regardless of whether it is a control group or not. researchers included studies that reflected a more represented sample, and the meta-analysis provides insight into if type of animal matters, what type of participants are used most often, and what concerns benefit most. some specific findings were that most often dogs were used as the preferred therapy animal, aat typically targeted mental health concerns, aat was used with adults more than minors, animal type mattered in some circumstances but not with mental health or well-being, and individuals with disabilities benefitted more than those without disabilities. the contributions this study made are valuable because it provided a animal-assisted intervention impacts ebd xxvi “big picture” of what studies show on aat and how aat has been helpful to specific participants. an alternative study by schramm et al. ( ) focused on relapse prevention in depression. researchers used a modified version of mindfulness-based cognitive therapy (mbct), nature and animal-assisted mindfulness training (namt). this program was an open pilot study where the participants ranged in ages from to years old. participants had been diagnosed with major depressive disorder, responding to antidepressants and psychotherapy. six patients, all who had early trauma, participated in the program. this program was conducted through registered psychotherapists with training in mindfulness who were also animal caretakers. coburger fox sheep (a breed of sheep familiar with humans) were used as the animal companions. the beck depression inventory and response style questionnaire was used, and mindfulness skills were assessed through kentucky inventory of mindfulness skills and the freiburg mindfulness questionnaire. as a result of this pilot program, five out of six participants had improved depressive symptoms, and had reduced negative thoughts. participants checked in through questionnaires pre- and post-interventions, over a period of weeks (schramm et al., ). this study is relevant to my project because it illustrated how aat can be used with mindfulness training, showing how it has the potential to partner well with other activities, which is something that would be a common interaction in a school setting. this study also showed how using animals in conjunction with training can be an alternative route to skills training. aat is an adjunct modality intended to be used with another modality in order for it to function at its best. animal-assisted intervention impacts ebd xxvii utilization by mental health professionals. o’callaghan and chandler ( ) explored animal-assisted interventions utilized by mental health professionals. the purpose of this study was to examine how mental health professionals incorporate specific animal-assisted techniques into their therapeutic process. the study was done through a survey inquiry determining if different techniques for animal-assisted therapy are used, what techniques are incorporated more than others, and if certain techniques are used for different reasons. participants were licensed mental health professionals in the united states who practiced aat. this study relied on professionals who completed a survey. the study found that most professionals use animal therapy in more than one orientation such as in the role of a class pet, or used to assist with a reading visitation program, as well as to provide a calming effect in the classroom. dogs were a common choice of animal used. in cases where aat was not used, it would be because the day was not conducive for it, or the patients were not willing to have animal therapy as part of their intervention program. this study highlights that the use of aat is still in its infancy, but that it is a tool being used more and more frequently. clearly, more attention needs to be placed on further research into the use of aat in different settings, including education. in their study, dietz and pennings ( ), evaluated aat in a group treatment setting for children who experienced sexual abuse. three groups of interventions on trauma symptoms were compared. they all followed the same treatment protocol with two variations of animal-assisted therapy. the conditions of the three groups were no dogs, dogs but no stories, and dogs with stories. aat is not generally used as a stand- alone therapy, but most commonly alongside treatment strategies. there were animal-assisted intervention impacts ebd xxviii children ranging from the ages of seven to years old involved in group therapy at a child advocacy center. the results showed that those in groups with therapy dogs showed significant decreases in trauma symptoms, such as anxiety, depression, anger, ptsd, dissociation, and sexual concerns. further decreases were experienced when aat was accompanied with therapeutic stories, a process used to help children express themselves with difficult topics (dietz & pennings, ). equine-based therapy is not a new concept. riding therapy existed in british world war to aid in rehabilitation of veterans (selby & smith-osborne, ). a new manual-based treatment for patients with mental disorders (who have taken part in conventional psychotherapy but have been unsuccessful) is based on patients who have tried an equine-facilitated body and emotion-oriented psychotherapy program (ebep) (johansen, wang, binder, & malt, ). horses are known to have a high sensitivity and responsiveness to body language and are often used to help patients improve their self-awareness on their emotions, bodily responses, and communication. during the program therapists help the patient be more aware when interacting with the horses but also help them verbalize their experiences. to ensure this program is relevant to the individual, the patient undergoes clinical and semi-structured psychiatric interviews to gain a clear diagnosis and develop their individualized treatment plan. patients who are suitable for such a program are those who have participated in conventional psychotherapy without effect, individuals who want treatment but do not accept conversation-based psychotherapy, individuals with attachment or non-verbal communication problems, and those interested in therapy connected to animals (johansen et al., ). animal-assisted intervention impacts ebd xxix in a systematic review of experimental evidence regarding animal-assisted therapies for children or adolescents with or at risk for mental health conditions, studies met a specific criterion. to meet the criteria, the study needed to be published between and , be an intervention on an individual of years or younger, the participant needed to be considered at risk of mental health symptoms, animals were required to be part of the child or adolescents’ treatment, and the study required a control or comparison group (hoagwood, acri, & peth-pierce, ). of the studies that fit the criterion, % had an equine focus, % studied dog therapies and the remaining % tested on interventions that included different animals (cats and rabbits). of the studies, % of these interventions took place outside of a counseling setting in a horse stable, child advocacy center, classroom, or a medical or dental office. out of the randomized trials that existed, three studies found significant differences between groups in favour of the animal group regarding positive change in social competence, behaviour, social functioning, hyperactivity, social cognition, and communication. some of the studies showed reduction in adhd symptoms in both types of groups, with more of a decrease with the intervention groups (hoagwood et al., ). these results show the effectiveness of aat for children and adolescents, but also suggests impacts vary depending on conditions, individuals, and needs. animal-assisted intervention in schools. in a study by bassette and taber- doughty ( ), researchers examined the effects of a dog reading visitation program. the study addressed the issue that students who struggle with emotional behavioural disorders (ebd) often struggle with reading. three students who were identified as having ebd in their individual education plans (iep) participated in this study. the animal-assisted intervention impacts ebd xxx study compared two reading locations for independent reading time, reading at a desk in the library versus reading to the dog in a private corner of the classroom. the students’ reading levels were identified through a pre-quiz. student chose higher level books to ensure it was near frustration level and there was interval recording for on-task time. the main results of the study showed improvements with observed on-task behaviour for all three students when using the dog reading program. through specific measurements and interviews with students, this study provided insight into behaviours such as motivation, engagement, and willingness to take risks in learning, as well as where animal-assisted intervention may play an important role. another study was performed with a similar focus on the impacts of a canine- assisted reading program (linder at al., ). this study took place in a public elementary school setting with second grade students. these students either read to a registered therapy dog for -minutes once a week or were part of a control group working with a standard classroom curriculum. students’ reading skills were assessed twice a month as well as their attitudes towards readings (pre- and post- intervention). results showed that academic achievement did not change significantly for either group. however, students who were part of the intervention group did experience significant changes in scores on attitudes towards academic reading (not towards recreational reading). these results support claims towards benefits of animal-assisted intervention in children’s attitudes and more specifically a positive outlook on literacy. there is an existing school program where therapy dogs are integrated into the reading curriculum for the purpose of impacting a child’s reading skills and attitudes towards reading (kirnan et al., ). in one scenario they compared a kindergarten animal-assisted intervention impacts ebd xxxi classroom, during the winter, on a reading program with a dog versus a kindergarten group in the winter with no dog. when the researchers first checked in, in the winter, there were no significant differences between the two groups. however in the spring, the group with the dog program had higher reading scores. educators commented that the weekly visits from the dogs were something to look forward to and provided students with motivation to do well. in the beginning, some students and adults displayed skepticism but by the end of the program there was % buy-in. the benefits in this study were increased confidence and interest in reading, focus, and ability to stay on task. the challenges to the actual implementation was teaching students how to interact with the dogs appropriately and accommodating the students who did not want to participate in the beginning. although these challenges required additional explicit teaching and accommodation up-front, eventually all students interacted with the dogs appropriately and benefitted from having dogs in the classroom. in another study, the effects of a school dog-teacher team were investigated, focusing on socio-emotional learning, depression, and emotion regulation strategies within a third grade classroom (beetz, ). the term school dog refers to a dog owned by the teachers, who has their dog visit one to five times a week, which is different from a handler. the study had a school dog present one day a week whereas the control classroom did not. results showed that the school dog group experienced a stronger improvement with a positive attitude towards school, enhanced motivation, consistent with results from previous studies. over a course of a year, students experienced positive emotions toward learning (beetz, ). motivation is a common rationale for animal-assisted intervention impacts ebd xxxii implementing aai in the classroom. from these results it can be concluded that these positive emotions would support learning of individuals. in a theoretical discussion, friesen ( ) focused on how animal-assisted therapy (aat) can provide children with a valuable form of social and emotional support in either an educational or therapeutic setting. through this discussion, gathering anecdotal evidence from other studies, common research was found that children’s interactions with animals provide physiological, social, and emotional benefits. the conclusions found were that potential candidates for aat interventions were identified by special education teachers or therapists based on a clear understanding of the student’s educational or therapeutic goals. animals are helpful with children because they are willing and active participants without communicating judgment or criticism. this study highlighted who are ideal candidates for aat and provided a brief overview on the benefits of aat. ideal candidates include those who do not have allergies or fears towards certain animals, those with a cultural background that have a positive outlook on certain types of animals, and that candidates are paired appropriately with a type of animal and program specific to the goal they have. some of the benefits of aat highlighted include increased socialization due to interactions, have a calming effect in high stress situations, and in some cases behavioural and emotional anxiety is reduced when in the presence of an animal, and lowered blood pressure and heart rate while a child reads aloud (friesen, ). having animals within the classroom is a common practice. rud and beck ( ) conducted a survey looking into the goal educators have when they pursue this practice. this survey consisted of over teachers in the usa. results found that teachers were animal-assisted intervention impacts ebd xxxiii using animals as academic research and access points for creative activities within the classroom. students used the animals as a method to calm themselves, assist with a positive outlook towards school, and improve their psychological well-being (rud & beck, ). the analysis of education approaches towards the human-animal relationship is presented in one article by senent ( ). this is european-based with some american websites considered. in both european and american scientific literature, it was found that animals have been predominantly used in a zootherapy or aat way in an educational setting. this article explains five states that exist in aat that an educator may go through, which as are as follows (senent, , p. - ): ) contact- this is the beginning stage for any educator-animal relationship where their common history is necessary in order to develop a special sensitivity towards the animal. an example of this would be owning a pet or being a farmer. ) appreciation and development of sensitivity towards animals- in this stage a closeness is developed to animals. physical contact is needed. ) learning through observation- in this stage we learn through animals by imitating their behaviour and what their understanding could be of humans. ) defense and protection of animals- this state occurs when the educator is aware of the animals and understands them thoroughly. they have developed experiences and connections with animals. their defense and protection of animals is often a socio-political commitment to them. animal-assisted intervention impacts ebd xxxiv ) animal-assisted activities- the last state is best known for where the human-animal relationship may have therapeutic qualities. the animal takes on animal-assisted activities and animal-assisted therapies. these states provide clarity to the process that occurs, either in order or sometimes simultaneously, in order for a solid foundation of respect and knowledge between educator and animal to form. conclusion of studies. all the studies within this review of literature have different focuses regarding animal-assisted intervention and the impact they can have on individuals. barker and dawson ( ) researched whether anxiety levels differ based on type of intervention, daly and suggs ( ) provided insight into how much educators use or know about animal-assisted intervention, and bassette and taber-doughty ( ) measured academic engagement if anxiety can be alleviated. relating to my project, this review highlights many ways animal-assisted intervention is currently being used, which provides a foundation for sharing this information with other educators, specifying the various ways they can incorporate such interventions. these studies explain the benefits and provide evidence-based research to support educators wanting to have animal- assisted intervention as part of their classroom. gaps in the field there are a few common gaps in the field regarding the use of animal-assisted intervention within education. the most common gap is how pet therapy does not have a universal guide of how it can be used effectively and when to use it (daly & suggs, ). the gap in the study by nimer and lundahl ( ), was shown through the gathering of studies highlighting the needs of how to deploy such an intervention since animal-assisted intervention impacts ebd xxxv findings showed that animal type, purpose, and training do matter. another area that needs further development is analyzing who this type of instruction may be best suited for. for therapy, there are screening tools that have been developed for clients to help determine suitability, but this type of screening does not currently exist within education. in many studies, a limitation is that there are few details as to why aat may have been effective for one participant but not the other (friesen, ). an additional gap in the field of education is classroom compositions are often very different from one class to the next and that there are many variables that may affect the success of an intervention. many of the studies discussed how animal therapy could be used as a tool within the classroom (friesen, ). in the study by schramm et al. ( ), mindfulness training is used in partnership with animals as a more successful way of using the program. understanding who the ideal candidates are will allow the consideration of aat in an education setting and make the feasibility an easier process. since the interest in the use of animal therapies has increased, confusion in terminology has impacted the effective communication and use of interventions. contributions to the field the purpose of my project is to provide a resource for educators seeking information on animal-assisted intervention and utilize the best method of research-based information. grounded in research in the field of aat, this project will help bring clarity to the deployment of aat, shed light on what is considered effective implementation, and help educators understand what works and what does not work within the classroom and possible reasons why. summary animal-assisted intervention impacts ebd xxxvi this literature review discussed the importance of attachment theory, ebd, and summarized the existing research on animal therapies and the varying positive impacts it can have on individuals and groups. animal-assisted intervention benefits are based on the safe attachment students form when they connect with animals (bassette & taber- doughty, ). ebd is affected by this because endorphins increase from petting an animal and can alleviate the anxiety an individual feels (levinson, ) as well as allow them to be self-reflective of their body language based on the reactions of animals (selby & smith-osborne, ). this chapter clarified the further need for educating teachers on this existing intervention and how animal-assisted intervention can be utilized. it is important to understand that pet therapies used in various settings show potential for a similar use within an education setting. the use, training, experience, and need, are all contributors. the relevance of the previous literature allows educators to learn about the various ways aat has and can be used, the benefits that come from it, and bring perspective to possibilities of how it can be used in their own classroom. animal-assisted intervention impacts ebd xxxvii chapter three: overview of project “are there an observable, knowable, universal truths? of course. math and science have given us many examples. but when it comes to the swirl of human emotion, behaviour, language, and cognition- there are many valid perspectives” (brown, , p. ). introduction this chapter outlines the project i created, emotional behavioural disorders & animal-assisted intervention, as part of the requirements for the master of education in special education degree from vancouver island university. chapter three will give readers a clear idea about what they can expect from the resource and whether or not it will be valuable to them. the purpose of the project is identified and explained in detail. the structure and layout of the resource is described with the support of research. my project can be used as a professional development day but is in the format of a website for ease of access. the information included brings clarity to what aat is, how it has been used, why it may be used, what resources are available both locally and provincially, and steps to be considered. the project the project i created is meant to act as a professional development day resource for teachers to attend in their local school district or with their learning community. it is presented in the form of a website to provide flexibility for how it is attained. if a professional development day is not possible for a teacher to attend, they can still gain access to the information. information that is included on the website is: an explanation on ebd and self-regulation, an overview of aat (including definitions), research with a focus on education and wellness, support tools and videos that can aid implementation, animal-assisted intervention impacts ebd xxxviii and additional resources and programs available in british columbia as well as the specific okanagan area. an opportunity to seek out a learning community for continued accountability on the journey of animal-assisted instruction is also included. best practices of professional development there is a spectrum to what is considered professional development. professional development can be in the form of attending a workshop to a more informal experience in which an educator is doing an independent book study on a professional publication (villegas-reimers, ). the perspective on professional development is changing; where learning is acknowledged to happen over time. what has been found to be the most effective form of professional development is that it’s related to a teacher’s daily activities, provides regular follow-up support, creates opportunities for collaboration with meaningful interactions, and is designed as a series of related experiences over time as opposed to one-off presentations (villegas-reimers, ). clearly, there is no one-way to implement effective professional development but rather it is more important that it reflects the needs of the schools, districts, and teachers (villegas-reimers, ). having a ‘one-off’ presentation may not be the most effective choice but it could be most feasible for those who are unable to attend ongoing development. having optional learning communities in partnership with this project is one way to provide the best of both worlds. professional development used in foreign countries. in one article, sysko ( ) looked at the different perspectives and developments on professional development. the aim of this study was to analyze the positive experiences in organizing continuing professional development of teachers in foreign countries. the approach to animal-assisted intervention impacts ebd xxxix professional development within the modernizing education system in ukraine has a personality-oriented approach, with flexibility and diversity of forms and training content (sysko, ). sysko ( ) states “the key factor, which influences effectiveness of continuing professional development is the teachers’ ability to reflect, motivation, responsibility, and academic mobility within professional development” (p. ). within canada, current professional development of teachers is regulated at the district and provincial level, and is provided by universities, education departments, regional education centers, school boards, volunteer teacher associations, teacher unions, and private providers of professional development services, all aimed at organizing advanced training within school. looking further into canadian professional development, each teacher develops a plan for their individual professional development, typically funded by education authorities. in contrast, finland provides teachers advanced training over two to three-day training every month, looking at other pedagogical activity within other educational institutions as a way for them to apply it to their own teaching (sysko, ). this article highlights how countries have varying ways of professional development and defining the ‘best practice’ is determined by the needs of teachers and the current education system. professional development: knowledge in practice. professional development embodies many different forms for different purposes, the key to its success is the commitment and follow through by those who are practicing. in one study, researchers were looking into the implementation of an online program used by teachers to support early childhood literacy instruction in an australian and indigenous context, using the best practices of professional development for remote areas (helmer, bartlett, animal-assisted intervention impacts ebd xl wolgemuth, & lea, ). this article outlined the challenges and successes experienced by the researchers and coaches while supporting its teachers. australia has consistently ranked one of the top countries in reading, mathematics, and science literacy but indigenous australians are not ranking in the same way, specifically in remote areas in the northern territory. an online literacy program was created and implemented in seven schools due to the lack of ability to provide in-service training to educators in that specific area. the focus was to use best practice of professional development; embedding the knowledge in practice while still heavily depending on the ‘buy-in’ of the teachers, ongoing approach is preferred over one shot workshops to get teachers to master a skill, collaborative problem solving, involved reflection and feedback, and follow up by support. results found that though intention and development of the program were good, teacher follow through and investment were the biggest factors. the younger and less experienced teachers often had a greater commitment showing greater success with implementation. though there is best practice for professional development, the biggest factor needs to be the interest and investment of educators, and their willingness to apply their knowledge consistently (helmer et al., ). with these considerations in mind, my project provides flexibility; it can suit the current needs and circumstances of the teachers. learning communities are offered but not required. my website is an entry level access point to learning further information through the presented research and existing resources. professional development: review of literature. teachers are a key factor to successful student achievement. therefore professional development that supports teachers in this endeavour should focus on teacher quality (kuijpers, houtveen, & animal-assisted intervention impacts ebd xli wubbels, ). it has been found that professional development days fail to focus on what conditions are needed to support teachers appropriately (kujipers et al., ). in a review of literature by kujipers et al. ( ), there were nine common principles found for effective school improvement. these nine principles are as follows: ) provide an approach specific to school. a. consider the school or schools as a starting point. ) use a cyclic approach to improvement. a. being prepared with necessary skills and knowledge for every stage. ) have a focus on the teaching and learning processes that exist. ) consider all school factors, such as: procedures, the roles, structures, and facilities that exist to support the teacher and learning processes. ) create educational goals at all three levels: the school, teacher, and student. ) apply multiple different perspectives. ) take on implementation strategies on how to reach these goals. ) include and offer external support (outside programs). ) use information from various research sources. a combination of the above nine principles have been applied to several schools where improvement was seen when teachers used a goal-oriented model. in cases where this was not as successful, one of the principles was compromised. for example, some educators were not willing to have an external support observe them (kuijpers et al., ). the ways in which this website is geared towards success within these nine principles are it provides a context-specific approach, provides a platform for information that is accessible to educators if they cannot physically make it to a professional animal-assisted intervention impacts ebd xlii development day, and uses information from various research sources. as part of the website, there is a learning community communication board where teachers can connect with similar goals for accountability and shared experiences. this is an open forum where anyone and everyone can read while staying anonymous based on the information they provide. in a narrative study by sprott ( ), teachers’ descriptions were given regarding what helped and what was difficult in developing their teaching skills. teachers often experienced growth when they included their students as fellow collaborators, travelled to other classrooms and schools to observe what other teachers were doing, developed professional relationships, and given time and space for intentional collaboration and reflection with their students. hindrances to effective implementation and growth were having a lack of common planning time with students or fellow colleagues and mandates on testing or standardization that took away from the beliefs of the educator (sprott ). overview and implementation this project is in the form of a website to ensure it is accessible to educators to look at for the professional development day or alternatively after if an educator could not attend the professional development day. in addition, it is available to anyone who would like to share the information with another group. although research shows ongoing professional development can be more effective and often considered best practice, this specific professional development day is not focused on teaching educators to master a skill but rather provide them further insight into animal-assisted instruction and the available resources around them to support them through their learning journey. animal-assisted intervention impacts ebd xliii most of the information could be provided within a day to work around teachers’ busy schedules and be provided on previously determined professional development days. though learning communities are very supportive, pro-d days are available to teachers as an intentional day of learning. to ensure this can be in its most effective form, those who attend can create learning communities, based on what their location, intervention journey they may be on, or connection they make with a group. for those who are unable to physically attend the day, they can connect with others online through the website. these groups will meet on their own time to share about their experiences, provide feedback or resources based on what they have found, and promote accountability for one another. the learning communities will be optional but will increase the effectiveness of this resource. learning communities provide opportunities for educators to seek like- minded individuals who are either more educated on their focus or seek the same guidance and training in a type of intervention. this ongoing learning process keeps teachers accountable to what they are learning, provides them support to ask questions and have someone check in, and creates accountability to life-long learning. learning communities are a great way to connect to outside resources and programs. it is difficult to expect anyone to master a new skill within the process of a day. however more success comes with ongoing learning and practice. this day is meant to provide information and opportunities without adding stress to educators. stress is limited in this form of professional development because the resource is designed as a one-day commitment for interested educators, with the potential opportunities for further investigation. further investigation may come in the form of becoming part of a learning animal-assisted intervention impacts ebd xliv community that decides the direction and commitment they will have or contacting outside supports, such as st. john’s ambulance. the purpose of this project the purpose of this project is to provide insight into various ways animal-assisted therapies and interventions can be utilized within education and highlight existing resources that are available to educators. existing resources and information on animal- assisted interventions is provided in the form of a website, making it accessible to those who want to access the information after a professional development day if they are unable to attend. the opportunity to be part of a learning community is encouraged and provided through an open forum on the website to incorporate continuous learning and follow through. teachers are busy and have many responsibilities in the classroom to ensure they meet the academic, social, and emotional needs of their students. many teachers are interested in learning about how animal-assisted interventions can be utilized in the classroom but lack the time to search for research-driven resources. interested teachers will be able to see the information and be provided guidance on different ways they can pursue this journey. website design the website is broken up into different pages to help with readability, accessibility, and visual appeal. pages are accessed by clicking the top tabs with the headings: home, ebd & self-regulation, aat, additional resources, and more. the following section provides an overview of what readers can expect to find on each page. animal-assisted intervention impacts ebd xlv home. on the home page, educators will find a summary to what each page is about on the website. they will also have the opportunity to connect with others on a similar journey on an open forum. ebd & self-regulation. on the emotional behavioural disorders & self- regulation page, educators will find information about what each is, why it is important to understand what they are, and how they can appear. aat. on the animal assisted therapy (aat) page, educators will find information on what animal-assisted interventions are and what animal-assisted interventions are not, benefits it can provide, and the many different terms and definitions used within the world of aat. more. this tab allows educators to access additional resources: research, implementation, resources and programs, and references. the tab, research, expands to research in education and research in wellness. the tab, implementation, expands to support tools & videos (extra resources). additional resources. this page is provided as an alternate way to navigate through to the following pages: research in education, research in wellness, implementation, support tools & videos, resources & programs, and references. any individual who accesses this website has a chance to reach these pages through different avenues. research. on the research page, educators will find a brief explanation on the purpose of research with an education focus, with a button that links them directly to that specific page, and an explanation of research with a wellness focus, also with a button to link them directly to that page. animal-assisted intervention impacts ebd xlvi research in education. on this page, educators will find a list of research articles on aat and education, with a brief description of each. at the bottom of the page is a button that links the educator directly to the ‘research in wellness’ page. research in wellness. on this page, educators will find a list of research articles on aat and mental wellness, with a brief description of each. at the bottom of the page is a button that links the educator directly to the ‘research in education’ page. implementation. on this implementation page, educators will find ways they can implement animal-assisted interventions in their classroom, in small steps, big ways, with either a permanent commitment or ways to familiarize one’s self with it. support tools & videos. on this page, educators will find recommended picture books to introduce the idea of animals into the classroom. they will also find two tedtalk links, that expand on the concept of trauma and aat. resources & programs. on this page, educators will find okanagan-based programs that they can connect with for support with various types of aat. they will also find canada-based programs that provide support. each program is described and provided with a button that links the educator directly to their website. references. on the reference page, educators will find all the research that supports the creation and content of the website resource. implementation of professional development day the website project is designed to be a reference for educators to use during a professional development day. to implement the professional development day, the person leading the group should have a clear understanding of the contents within the website, spent an adequate amount of time reviewing the information and references, and animal-assisted intervention impacts ebd xlvii be able to guide fellow colleagues in using this website. the professional day format will be based on the individual needs of the school. however, to implement the day successfully, the group needs a computer connected to a projector and be connected to the internet. the website can be found at: https://animalassistedintervention.weebly.com summary this chapter explained the structure, format, and intentions of my project, as well as the intended audience and implementation. with the support of research on best practice of professional development, my website was created in a way that provides easy access for those seeking the information, is accommodating to busy schedules, as well as provided opportunities to connect through learning communities. it has been found that best practice comes through ongoing learning and mastery of a skill, but the success of learning and implementation of an intervention comes through the commitment of a teacher. educators are responsible for great amounts of follow-through. by providing a website as a resource for current research on animal-assisted interventions, local programs as support, and examples of implementation, this resource eases the load on a teacher contemplating animal-assisted interventions within their practice. animal-assisted interventions can be a powerful tool in education. it is my hope that by using this website, educators will feel more knowledgeable about what animal-assisted interventions in schools looks like and feel supported in their journey. https://animalassistedintervention.weebly.com/ animal-assisted intervention impacts ebd xlviii chapter four: reflection and conclusions “emotional literacy, in my opinion, is as critical as having language. when we can’t name and articulate what’s happening to us emotionally, we cannot move through it (brown, , p. ).” introduction this chapter reflects on the journey i took to create my project, accounting the process of research on animal-assisted education, emotional behavioural disorders, self- regulation, changing classroom dynamics, and the best practice of professional development. i am proud of the format and presentation of my project, the organization of information, and the intentions i hold. limitations within the project are the needs for continued further research in animal-assisted interventions that show the long-term effects. i believe my research and website provide positive contributions to the special education field by providing a way for teachers to access what current research exists on the topic and how such an intervention has been used. successes of the project there are many successes in this project that i am proud of. i like the overall format and way i chose for the information to be presented. i believe that by developing a website for the information i found a format to provide teachers with an accessible way to gain knowledge, especially if attending a professional development day is not practical for them. the website lays out general knowledge to provide the reader with background information, including the acronyms aai, aat, ebd, and self-regulation as well as a definition of terms. the background information provides more familiarity with the topic. the reason i provided information on current research as small summaries is because i animal-assisted intervention impacts ebd xlix found the studies helped me learn the different ways animal-assisted interventions has been used as an intervention successfully. if a reader would like to look further into a specific study based on the small description, they can seek out this information independently. i understand the interest of wanting to pursue a new teaching strategy in my own practice but unsure on what my first steps should look like or how to expose my students. i believe my website is helpful in providing simple first steps, simple resources like picture books to read to younger students, and outside supports that are more educated in this topic. knowing what is available locally is helpful for educators to get started. limitations of the project the limitations in this project are the restriction of what i could develop in regard to the learning community. understanding that best practice in professional development is an ongoing of learning and accountability, i wanted to be able to create this in the context of my project. what was difficult about this was setting parameters or expectations of how the learning community would be developed and accessible. on my website i have an open forum where educators can share their experiences and seek out groups, entirely up to their own initiative. this provides educators with the option to seek an online learning community. best practices within professional development have been found to be continual learning and follow up on a focus. the limitation i experienced with this is that i created a website with the idea of a one-day professional development. had this been a thesis, i would want to find a way where this could be an ongoing series, where teacher groups are meeting, discussing their concerns, and supporting one another. the most common and continuous limitation i experienced was the actual research on animal-assisted intervention impacts ebd l animal therapies. animal therapies are not a new practice but still appear to be young in its foundation of available research. in many of the studies i read, much of the results concluded that more time was needed to fully understand the long-term impacts of animal therapy. implications for what i have learned going through the process of having an idea for this project, combining my passion for animals and seeing the need for self-regulation support was eye opening when looking through the research. in the beginning of this process i felt that there was a need to have animals present in the classroom because of the calming effect they had on students. upon further research my views have developed and changed. i now see that if there is a specific need, animal therapy can be a potential form of intervention to help with this, but not always the right one. i also learned how effective animal-assisted interventions can be in partnership with other programs. the need, the student, the space, and the investment of the educator are all factors to be considered. when considering students, i learned that not only can their needs be diverse but what intervention is appropriate for them also varies. teachers need to have an investment when going about the route of which animal therapy they would like to explore and implement. having a good understanding of the different ways it can look like, and the purposes they provide is only a good start to the process. i fully believe for a teacher to be successful with the use of animal-assisted intervention, they need to continuously be assessing if this intervention choice is still appropriate for the need and what learning community or support community can they find in order to ask the necessary questions. this cannot just be an endeavour taken upon by the teacher but also needs the support of administration, animal-assisted intervention impacts ebd li at every level within district and by all departments, colleagues, students, and parents. within the educational field i am proud to be providing an additional resource that could be useful to teachers who have no prior knowledge of what animal assisted interventions look like. i am passionate about this type of intervention and bringing light to the benefits it can bring. this website created can be used for multiple functions, a platform for a professional development day, a literature resource for an educator to explore on their own time, or a resource for a learning community group. conclusion overall, this project was inspired by the gift animals can bring in an individual’s life and the change they can create within their emotional regulation and how they carry themselves. research brought clarity to what exists within this field, gaps that need to be addressed, how animal-assisted intervention can be best suited for individuals and groups, and what is needed for teachers to be best educated in this area. the result is a website that provides flexibility to how the knowledge is attained and leaves an educator with future steps that they can pursue. animal-assisted intervention impacts ebd lii references american psychiatric association. 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( ). examining emotional support animals and role conflicts in professional psychology. professional psychology: research and practice, ( ), - . doi: . /pro animal-assisted intervention impacts ebd lviii appendix a for ease of access, the website link is provided here. https://animalassistedintervention.weebly.com https://animalassistedintervention.weebly.com/ brunner et al. ejnmmi research , : http://www.ejnmmires.com/content/ / / original research open access left ventricular functional assessment in murine models of ischemic and dilated cardiomyopathy using [ f]fdg-pet: comparison with cardiac mri and monitoring erythropoietin therapy stefan brunner †, andrei todica †, guido böning , stefan g nekolla , moritz wildgruber , sebastian lehner , martina sauter , christopher Übleis , karin klingel , paul cumming , wolfgang michael franz and marcus hacker * abstract background: we performed an initial evaluation of non-invasive ecg-gated [ f]fdg-positron emission tomography (fdg-pet) for serial measurements of left ventricular volumes and function in murine models of dilated (dcm) and ischemic cardiomyopathy (icm), and then tested the effect of erythropoietin (epo) treatment on dcm mice in a preliminary fdg-pet therapy monitoring study. methods: mice developed dcm weeks after injection with coxsackievirus b (cvb ), whereas icm was induced by ligation of the left anterior descending artery. lv volumes (edv and esv) and the ejection fraction (lvef) of dcm, icm and healthy control mice were measured by fdg-pet and compared with reference standard results obtained with . t magnetic resonance imaging (mri). in the subsequent monitoring study, lvef of dcm mice was evaluated by fdg-pet at baseline, and after weeks of treatment, with epo or saline. results: lv volumes and the lvef as measured by fdg-pet correlated significantly with the mri results. these correlations were higher in healthy and dcm mice than in icm mice, in which lvef measurements were somewhat compromised by absence of fdg uptake in the area of infarction. lv volumes (edv and esv) were systematically underestimated by fdg-pet, with net bias such that lvef measurements in both models of heart disease exceeded by % to % results obtained by mri. in our subsequent monitoring study of dcm mice, we found a significant decrease of lvef in the epo group, but not in the saline-treated mice. moreover, lvef in the epo and saline mice significantly correlated with histological scores of fibrosis. conclusions: lvef estimated by ecg-gated fdg-pet significantly correlated with the reference standard mri, most notably in healthy mice and mice with dcm. fdg-pet served for longitudinal monitoring of effects of epo treatment in dcm mice. keywords: ejection fraction, cardiomyopathy, positron emission tomography, magnetic resonance imaging, erythropoietin * correspondence: marcus.hacker@med.uni-muenchen.de †equal contributors department of nuclear medicine, ludwig-maximilians-university, klinikum grosshadern, marchioninistr , munich , germany full list of author information is available at the end of the article © brunner et al.; licensee springer. this is an open access article distributed under the terms of the creative commons attribution license (http://creativecommons.org/licenses/by/ . ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. mailto:marcus.hacker@med.uni-uenchen.de http://creativecommons.org/licenses/by/ . brunner et al. ejnmmi research , : page of http://www.ejnmmires.com/content/ / / background murine models of cardiovascular disease are increas- ingly important for evaluation of novel therapeutic approaches. a primary endpoint in such models is left ventricular ejection fraction (lvef), which is a strong independent predictor of cardiovascular morbidity and death [ , ]. several techniques have been developed for the assessment of left ventricle (lv) function in small animal investigations. pressure-volume relations can be measured with a conductance microcatheter, with the caveat that this invasive method is not per- missive to follow-up examinations in small animals [ ]. echocardiography is widely used in mice, despite its high intra- and inter-observer variability [ ]. in the clinical setting, cardiac magnetic resonance imaging (mri) and blood pool single-photon emission com- puted tomography are considered as gold standards for the assessment of lvef [ - ], but have not found wide use for monitoring cardiac therapies in mice. as an alternative to these approaches, positron emis- sion tomography (pet) with the glucose analogue [ f]-fluorodeoxyglucose (fdg), allows analysis of car- diac function and myocardial metabolism within the same setting [ , ]. indeed, fdg-pet has been evaluated against reference standard mri methods for the calcu- lation of lv function in healthy mice and in mice with ischemic cardiomyopathy (icm) due to myocardial infarction (mi) [ - ], but has not yet been tested in murine models of dilative cardiomyopathy (dcm). furthermore, the fitness of the applicability of gated fdg-pet for therapeutic monitoring in mouse models of myocardial diseases has not been established. therefore, we compared the accuracy of ecg-gated fdg-pet lvef measurements in healthy mice, and in murine models of icm and also in dcm-induced by coxsackievirus b (cvb ) exposure. quantitative results were compared with reference standard lv- function measurements obtained with . t clinical mri. we then proceeded to test gated fdg-pet for longitu- dinal monitoring in mice with cvb -induced dcm after erythropoietin (epo) treatment, based upon previous reports of its cardioprotective properties in preclinical models of myocardial infarction [ , ] as well as in rats with autoimmune-induced myocarditis [ , ]. methods animal models to obtain a murine model of icm, mi was induced in (n = ) male c bl/ wildtype (wt) mice (charles river laboratories, sulzbach, germany) by surgical oc- clusion of the left anterior descending artery (lad), as described previously [ ]. mice were examined by pet and mri weeks after mi. to obtain a murine model of dcm, swr/j (h- q) mice (n = ) were infected with cvb via intraperitoneal injection ( × pfu [ ]) [ ]. this procedure provokes mice to develop acute myocar- ditis at to days after injection, and subsequently to proceed to a chronic phase of myocarditis, resulting sev- eral weeks later in a dcm phenotype [ ]. our dcm mice were examined by pet and mri weeks after in- fection, with healthy, age-matched swr/j (h- q)-mice (n = ) serving as controls. for all imaging examinations, anaesthesia was induced with isoflurane ( . %) and maintained throughout the examination with isoflurane ( . %) delivered in oxygen ( . l/min) via a mask. animal care and all experimental procedures were performed in strict accordance to the guide for the care and use of laboratory animals published by the us national insti- tutes of health (nih publication no. – , revised ) and was approved by the local animal care and use committees. administration of epo in a separate intervention/treatment study, swr/j (h- q) mice (n = ) with cvb -induced dcm underwent a baseline fdg-pet examination weeks after cvb in- fection. following this scan, mice were randomised into groups which were treated thrice weekly for weeks with subcutaneous injections of saline (n = ) or epo ( iu/kg; erythropoietin alpha, janssen-cilag, neuss, germany; n = ). follow-up scans were performed weeks after completion of the treatment, thus weeks after the baseline scans. cardiac magnetic resonance imaging for reliable ecg synchronisation and high resolution imaging, a dedicated small animal ecg device, -mr (sa instruments inc., stony brook, ny), with a micros- copy coil (philips medical systems, best, nl) was used. imaging was performed on a . t philips achieva mr scanner using a clinical gradient system ( mt/m, mt/m/ms). the mice were imaged in prone position with the thorax placed on top of the microscopy single loop surface coil (d = . mm). high-resolution mri sequences for assessment of myocardial function and morphology were implemented as described previously [ ]. in brief, cine mri was performed with prospective ecg gating using a spoiled gradient echo technique. imaging parameters included tr/te = ms/ . ms, flip angle = °, averages = , fov = mm, matrix = , resulting in a spatial resolution of . × . × mm at a temporal resolution of ms. quantitative analysis of the cine mri was performed using a semi-automated approach employing a dedicated software package (munich heart/mriw, technical uni- versity munich, germany) [ ]. the end, epi- and endo- cardial contours of the entire lv slices were manually traced at end-diastolic (edv) and end-systolic (esv) brunner et al. ejnmmi research , : page of http://www.ejnmmires.com/content/ / / phases for calculation of the corresponding left ventricu- lar volumes, as well as the lvef. cardiac pet imaging pet was performed using the siemens inveon p pet scanner (siemens healthcare molecular imaging, knox- ville, tn, usa). after placing a catheter into a tail vein, the mice were positioned in a prone position within the aperture of the pet scanner and were kept warm with a heating pad so as to maintain core body temperature within the normal range, with continuous measurement of rectal temperature. cardiac excitation and respiration were measured and recorded throughout the scan using a dedicated system (biovet; spin systems pty ltd., usa). ecg electrodes were placed on both forepaws and the left hindpaw, and respiration was measured with a small pressure detector lying under the mouse thorax. after intravenous administration of fdg ( ± mbq), an ecg-gated emission recording followed throughout the interval to min after tracer injection and con- cluded with a -min transmission scan for attenuation correction. animals were returned to their home cage for recovery. the cardiac cycle from the fdg list-mode acquisitions was divided into eight equal intervals using the siemens-inveon acquisition workplace and recon- structed using map d with iterations and osem d with iterations. since we used eight bins for gated reconstruction, the time resolution for the pet is equal to the mean heartbeat duration/ for a mean heart rate of bpm resulted in a temporal resolution of ms. each image volume consisted of × × voxels of size . mm × . mm × . mm, resulting in a volu- metric resolution of approximately . μl [ ]. final pixel size was magnified by a factor of ten as required for compatibility of mouse data with qgs software tools [ ]. edv, esv and lvef measurements from the pet data sets were calculated using automated software packages (qgs [ , ], cedars sinai medical cen- ter, los angeles, usa). the automated wall recognition proved to be robust, such that no further manual inter- ventions were required. infarct size infarct sizes were estimated from fdg-pet data as percentage of the left ventricular myocardium area. to this end, the entire min recording was reconstructed (map d with iterations and osem d with iterations in a × matrix) as a static image and analysed using munichheartw (technical university munich, germany) with manual definition of the long axis of the resultant polar map. the infarct area was delineated with an intensity threshold % of the activ- ity in a septal roi [ , ]. histology to evaluate the diagnosis of cvb -induced dcm histo- pathologically, the hearts were removed weeks after infection and fixed in phosphate buffered % formalin prior to blocking of -mm thick slices, which were em- bedded in paraffin. five micrometre-thick sections were cut and stained with masson trichrome. we quantified the extent of fibrotic lesions in picrosirius red stained sections according to a score ranging from to , as previously described [ ]. statistical analyses data was analysed using predictive analysis software . mean values and standard deviations (sd) for edv, esv and lvef were calculated. means obtained by pet and mri were compared using paired student' t test. the agreement between the methods was visualised using bland-altman plots [ ]. additionally, pearson correl- ation coefficients (r) and linear regressions were calcu- lated and performed. values of p < . were considered statistically significant. results estimation of left ventricular functional parameters figure shows representative end-diastolic and end- systolic images of fdg-pet and mri from the myocar- dial base to the apex for animals with dcm (a), icm (b) and for healthy control (c) animals. there were high correlations between lv-functional parameter (edv, esv and lvef) measurements within the entire study group (figure a,b,c). results summarised in table show that fdg-pet significantly underestimated the magnitudes of edv and esv and significantly overesti- mated the lvef, as compared to our reference standard cine mri. bland-altman plots confirmed the underesti- mation of edv and esv, as well as the overestimation of lvef by fdg-pet relative to mri, but nearly all differ- ence values fell within ± . sd (figure a,b,c right hand side, table ). considering only control mice to- gether with the dcm group, the bias was even lower and the limits of agreement in the bland-altman plots were even more stringent (table ). correlation between infarct size and ejection fraction there was a high negative correlation found between the infarct sizes in the fdg images from the icm group and the lvef values as measured by mri (r = . ), and a lesser correlation between the infarct sizes and the lvef derived from fdg-pet (r = . ) (figure ). monitoring lvef in dcm mice treated with erythropoietin means and standard deviations for edv, esv, stroke vol- ume (sv) and lvef for the baseline and follow-up mea- surements, along with the corresponding p values for figure comparison between different imaging modalities, representative images. fdg-pet versus mri (lower row) for animals with dcm (a, lvef: mri = %, fdg-pet = %), icm (b, lv-ef: mri = %, fdg-pet = %) and for healthy control animals (c, lvef: mri = %, fdg- pet = %). brunner et al. ejnmmi research , : page of http://www.ejnmmires.com/content/ / / treatment effects are summarised in table . in the epo-treated group, there was a significant decrease in the magnitude of lvef from ± % to ± % (p = . ), whereas the esv significantly increased from ± μl to ± μl (p = . ). the edv showed a significant increase from ± μl to ± μl in the saline-treated group (p = . ). for all other functional parameters, no significant changes were observed in the saline- and epo-treated groups. there were no signifi- cant differences in lvef observed between epo- and saline-treated mice before and after treatment (figure a). although the student's t test revealed a sig- nificant decrease for lvef in the epo-treated group, the difference of the lvef degradation between the saline and the epo groups fell just short of being significant (p = . ; figure b). the fibrosis scores in these mice correlated with the lvef measured by fdg-pet (r = . ) (figure ). discussion quantification of left ventricular functional parameters in murine models of heart disease entails considerable technical difficulties, arising from the small size of the heart and its rapid movement, with heart rates typically around bpm. in the present study, we conducted a comparison of different lv-function quantification methods in groups of healthy mice and in two models of cardiomyopathy. we compared fdg-pet measure- ments acquired on a dedicated small animal pet system with the reference standard for lv-function measure- ments, i.e. cine mri, which was performed with a . t clinical scanner equipped with a microscopy coil. in the entire study group, we found high correlations between fdg-pet and the reference standard lv-function mea- surements, albeit with a systematic underestimation of the lv volumes, propagating to a net overestimation of the lvef by fdg-pet. due to imperfect delineation of brunner et al. ejnmmi research , : page of http://www.ejnmmires.com/content/ / / myocardial scar tissue, the bias between fdg-pet and the reference standard results was markedly higher in the icm mice. to our knowledge, this is the first investigation exam- ining the fitness of ecg-gated fdg-pet for the estima- tion of lv function in different mouse models of cardiovascular disease within one setting. in an earlier proof-of-principal study conducted in only two healthy mice, yang et al. demonstrated the technical possibility of measuring murine lvef with cardiac-gated fdg-pet [ ]. in another study, gated fdg-pet was validated against echocardiography in rats with myocardial infarc- tion [ ]. stegger et al. were the first to quantify lv figure scatter plots of the relationship between measurements of measurements within the entire study group by fdg-pet and by mri for a plot (right hand side) for all animals, for the cases of (a) edv, (b) esv and ( volumes and ejection fraction using fdg-pet compared to mri [ ], both in healthy mice and in mice with per- manent (icm) or transient lad ligation. in contrast to the data from human studies and to the results of [ ], we observed a significant overestimation of the lv volumes. furthermore, compared to their lvef values in healthy mice ( ± % in pet and ± % in cine mri), mean lvef estimates in our mixed group of healthy control and dcm mice ( ± % in pet and ± % in cine mri), which were pooled so as to ob- tain adequate statistical power for this comparison, stand somewhat in contrast to higher corresponding results reported by [ ]. however, our decision to combine the lv parameters. correlations between lv-functional parameter ll animals (left hand side). alongside the corresponding bland-altman- c) lvef. table comparison between lv-functional parameters as calculated by cine mri and fdg-pet for different study subgroups hc + dcm + icm hc + dcm icm cine mri fdg-pet cine mri fdg-pet cine mri fdg-pet edv (μl) ± ± * ± ± * ± ± * bias loa − to − to to esv (μl) ± ± * ± ± * ± ± * bias loa − to to to lvef (%) ± ± * ± ± * ± ± * bias − − − loa − to − − to − − to − values are presented as mean ± standard deviation for the comparison of fdg-pet with the reference method cine mri. furthermore the corresponding biases and limits of agreement (loa) calculated from bland-altman plots are presented. *student's t test revealed a statistically significant difference. brunner et al. ejnmmi research , : page of http://www.ejnmmires.com/content/ / / healthy and dcm groups does not account for the present finding of a % overestimation of lvef by fdg-pet as compared to mri. our finding of lower lvef by mri can likely be attributed to our use of a clinical . t mri, whereas [ ] used a . t dedicated small animal mri, which provides images less vulnerable to partial volume effects, and in more slices. further- more, we used a semi-automated approach for the quan- titative analysis of the cine mri (munichheart/mriw, technical university munich, germany) [ ] wherein epi- and endocardial contours of the entire left ventricle slices were manually traced at end-diastolic and end- systolic phases. consequently, the definition of the heart base is somewhat observer-dependent. since we acquired seven mr slices for the whole mouse heart, im- perfect definition of the valve plane could have had an impact on the final calculation of the corresponding left ventricular volumes as well as on the lvef. this limita- tion could partially account for the bias between our fdg-pet measurements relative to cine mr. for the present, dedicated animal mri systems are only available figure correlation between infarct size and lvef measured by mri at a few imaging laboratories, whereas clinical mri tomographs are widely available and provide a mature and validated imaging platform for animal imaging, al- beit with certain limitations noted above. similarly, our fdg-pet measurements of lvef in icm mice ( ± %) match the results presented by stegger et al. [ ] ( ± %) but with an even greater dis- crepancy (nearly two-fold) between the fdg-pet and mri measurements. here, another factor contributing to our discrepant findings compared to the results of [ ] is the time-point of examination. whereas [ ] exam- ined their mice weeks after myocardial infarction, our animals were scanned after weeks, a delay which prob- ably led to more advanced dilation of the left ventricle, which could have hindered delineation of the endocar- dial borders in the fdg images, propagating to a sys- tematic overestimation of lvef in our study. this conjecture is supported by the fact that mean volumes measured by mri were much higher in our icm group (edv, ± ; esv, ± ) compared to the findings by [ ] (edv, ± ; esv, ± ). (a) and fdg-pet (b). table lv–function parameters measured at baseline and after weeks with fdg-pet epo (n = ) baseline follow-up p saline (n = ) baseline follow-up p edv ± ± . edv ± ± . esv ± ± . esv ± ± . sv ± ± . sv ± ± . ef ± ± . ef ± ± . values are presented as mean and standard deviation, along with the corresponding p values (student's t test). brunner et al. ejnmmi research , : page of http://www.ejnmmires.com/content/ / / there is a general consensus arising from human stud- ies of lv function that values obtained with different segmentation algorithms are not perfectly interchange- able but require scaling between methods [ ]. the cedars tools (qgsw; cedars-sinai medical center, los angeles, ca) have already been used to evaluate lv function in rodents and showed physiologically reason- able results, as noted above. nonetheless, the different valve plane definitions could explain both our underesti- mation of the lv volumes and the net effect of overesti- mation of the lvef by fdg-pet. notwithstanding the advantages imparted by cine mri measurements, fdg- pet, in addition to lv functional parameters, provides reliable quantification of infarct sizes within the same setting. indeed, the parameter lvef and lad infarct sizes are inextricably related, as demonstrated by the figure monitoring epo treatment with ecg-gated fdg-pet. (a) the treatment with saline vs. epp, and (b) the change in lvef (Δ ef) for the sal very high negative correlations seen in the present study (figure ), which exemplifies the extent to which heart output declines with increasing area of infarcted lv. the somewhat lower correlation between lvef mea- surements by fdg-pet and reference standard methods in the icm group should not mitigate against the use of fdg-pet in the present dcm model. therefore, we chose to use fdg-pet in the epo-treatment therapy monitoring arm of this study. the sensitivity of func- tional fdg-pet in this context is made clear by the high correlation between the reduction in lvef and the degree of histological fibrosis (figure b), which is an in- dicator of the extent of pathological remodelling of the myocardium. epo is a growth factor exerting effects at diverse targets in addition to its well-known classical ac- tion to stimulate erythrocyte production. we have mean magnitude of lvef before (white bars) and after (black bars) ine and epo groups during month of treatment. figure correlation of lvef as assessed by ecg-gated fdg-pet with degree of fibrosis. (a) representative histological cardiac findings showing myocardial fibrotic areas in cvb -infected mice (masson trichrome staining). (b) correlation of degree of fibrosis obtained histology with lvef measured by fdg-pet. brunner et al. ejnmmi research , : page of http://www.ejnmmires.com/content/ / / earlier found epo to exert cardio-protective effects due to intrinsic anti-apoptotic properties and also due to mobilisation of bone marrow-derived stem cells [ , , , ]. the first clinical trial of epo in patients with chronic heart failure gave promising findings of increased exercise capacity and cardiac function [ , ]. however, clinical trials of epo treatment after myocar- dial infarction revealed discrepant results [ - ] pre- sumably due to a trade-off between actual benefits reflecting improved cardiac function versus correction of incidental anaemia, further confounded by deleterious effects arising from increased haematocrit. in previous reports in a rodent model of myocarditis [ , ], epo treatment produced substantial reductions in macro- phage infiltration and necrosis while rescuing cardiac function when administered soon after the onset of autoimmune pathology. however, in the present study of mice with established cvb -induced dcm, the epo treatment seemingly resulted in a significant decrease of lvef. our saline-treated dcm mice showed a strong trend towards decreasing lv function to follow-up, but without statistical significance, such that there emerged no notable difference between the two treatment groups. the apparently deleterious effect of epo treatment on lvef in dcm mice may be due to the high dose used in the present study, which may have induced polycythae- mia, resulted in impaired cardiac function. as such, negative effects of epo seem to have predominated over protective effects reported in other studies. conclusions in conclusion, lvef in murine hearts measured by ecg- triggered fdg-pet correlates highly with gated mri mea- surements. however, the fdg method systematically overestimated lvef relative to the gated mri gold stand- ard. despite this limitation, fdg-pet served for monitor- ing effects of epo treatment on cardiac function in mice with virus-induced dilatative cardiomyopathy. competing interests the authors declare that they have no competing interests. authors' contributions sb and at made the conception and design, as well as the analysis and interpretation of data. gb conducted the analysis of data. sn has done the analysis of data and revision of the manuscript critically for important intellectual content. mw, sl and cÜ did the analysis and interpretation of data. ms carried out the dcm animal models and interpretation of data. kk is responsible for the animal models and interpretation of data. pc did the revision of the manuscript critically for important intellectual content. wf did the revision of the manuscript critically for important intellectual content and the final approval of the manuscript. mh made the conception and design, as well as analysis and interpretation of data, revising the manuscript critically for important intellectual content and final approval of the manuscript. all authors read and approved the final manuscript. acknowledgements financial support was provided by the fritz-bender-stiftung and the else kröner-fresenius-stiftung. author details medical department i, ludwig-maximilians-university, klinikum grosshadern, marchioninistr , munich , germany. department of nuclear medicine, ludwig-maximilians-university, klinikum grosshadern, marchioninistr , munich , germany. department of nuclear medicine, technical university munich, klinikum rechts der isar, ismaninger str. , munich , germany. department of radiology, technical university munich, klinikum rechts der isar, ismaninger str. , munich , germany. department of molecular pathology, university of tübingen, liebermeierstr , tübingen , germany. abx gmbh, heinrich-glässer-strasse - , radeberg , germany. received: march accepted: july published: august references . sharir t, germano g, kavanagh pb, lai s, cohen i, lewin hc, friedman 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yoshimura n, akazawa k, aizawa y: single-dose intravenous administration of recombinant human erythropoietin is a promising treatment for patients with acute myocardial infarction - randomized controlled pilot trial of epo/ami- study. circ j , : – . . voors aa, belonje am, zijlstra f, hillege hl, anker sd, slart rh, tio ra, van't hof a, jukema jw, peels ho, henriques jp, ten berg jm, vos j, van gilst wh, van veldhuisen dj: a single dose of erythropoietin in st-elevation myocardial infarction. eur heart j , : – . doi: . / - x- - cite this article as: brunner et al.: left ventricular functional assessment in murine models of ischemic and dilated cardiomyopathy using [ f] fdg-pet: comparison with cardiac mri and monitoring erythropoietin therapy. ejnmmi research : . 	abstract 	background 	methods 	results 	conclusions 	background 	methods 	animal models 	administration of epo 	cardiac magnetic resonance imaging 	cardiac pet imaging 	infarct size 	histology 	statistical analyses 	results 	estimation of left ventricular functional parameters 	correlation between infarct size and ejection fraction 	monitoring lvef in dcm mice treated with erythropoietin 	discussion 	link_fig 	link_fig 	link_fig 	link_tab 	link_tab 	link_fig 	conclusions 	competing interests 	authors' contributions 	acknowledgements 	author details 	references 	link_cr 	link_fig 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr 	link_cr _ _ _article .. bmc complementary and alternative medicine , (suppl ): doi . /s - - - meeting abstracts open access world congress integrative medicine & health : part one berlin, germany. - may published: june introduction i world congress for integrative medicine & health - a global forum for exploring the future of comprehensive patient care benno brinkhaus , torkel falkenberg , , aviad haramati , , and stefan n. willich institute for social medicine, epidemiology and health economics, charité – universitätsmedizin berlin, berlin, germany; department of neurobiology care sciences and society, division of nursing, research group integrative care, karolinska institutet, stockholm, sweden; i c – the integrative care science center, järna, sweden; department of biochemistry, molecular and cellular biology, georgetown university, medical center, washington, dc, usa; department of medicine, georgetown university medical center, washington, dc, usa bmc complementary and alternative medicine , (suppl ):i we are excited to present the abstracts of the keynote speakers, parallel sessions and oral and poster presentations of the world congress on integrative medicine & health (wcimh ; http:// www.ecim-iccmr.org/ /) to be held in berlin on may - , , which will be jointly convened by the european society of integrative medicine (esim) and the international society for complementary medicine research (iscmr). the congress will take place in association with a number of national and international organizations from north america and other continents. consequently, the congress will provide the most comprehensive global forum and perspective in the field of complementary and integrative medicine in . the congress goal is reflected in its tag line: the future of compre- hensive patient care - strengthening the alliance of researchers, educa- tors and providers. we believe that by bringing together researchers, educators and providers, who are addressing various aspects of inte- grative medicine and health, we can build on the evidence obtained through research to inform clinical education and practice and thereby create a better platform for comprehensive patient care. the main themes of the congress are: . clinical care: the practice of integrative medicine should be based on distinct definitions, should be informed by evidence and evolve from guidelines that are developed by experts from conventional and complementary medicine. . education: academic leaders and health officials have called for future clinicians to possess the knowledge and skills to understand how integrative medicine can be incorporated into conventional care to improve the health of the public. therefore, it is essential to share best practices in how to © the author(s). open access this artic international license (http://creativecommons reproduction in any medium, provided you g the creative commons license, and indicate if (http://creativecommons.org/publicdomain/ze create robust curricular opportunities for medical students to experience systematic teaching of the principles, strengths and limitations of integrative medicine. . research: within this congress scientists will showcase the highest quality research worldwide in this field and will provide the state-of-the-science evidence base through plenary lec- tures, symposia and abstract presentations. . traditional healing systems (ths): traditional healing practices and practitioners are an important and often underestimated part of health care. ths is found in almost every country in the world and the demand for its services is increasing. research contributing to evidence informed decision making is imperative to develop a cohesive and integrative approach to health care that allows governments, health care practitioners and, most importantly, those who use health care services, to access ths in a safe, respectful, cost-efficient and effective manner. . arts and medicine: for the first time at a research congress, this theme will explore the important contributions of the arts (music, visual arts, dancing, etc,) for integrative therapeutic interventions to achieve optimal health and healing. given the ambitious scope of this worldwide international congress, the four authors of the present editorial serve as co-presidents and they are guided by the international organizing committee consist- ing of many experts from around the world including myeong s. lee, jianping liu, kenji watanabe (from far east asia), renee street (af- rica), amie. steel (australia), paulo arturo caceres guido, chin an lin (south america), heather boon, josephine briggs, john weeks (north america) and abdullah al-bedah, mohamed khalil, elad schiff (middle east and israel). the programming for each of the five themes is directed by wcimh theme subcommittees involving some of the most highly regarded clinicians, educators and researchers in the world in this field (in alphabetic order): linda balneaves, lesley braun, eva bojner horwitz, gustav dobos, jeffery dusik, david eisenberg, iva fattorini, eckhart g. hahn, suzanne b. hanser, frederick hecht, george lewith, harald matthes, andreas michalsen, judy rollins, volker scheid, mi- chael teut, robert saper, claudia m. witt, merlin wilcox and darong wu. the local organizing board is coordinated by m. cree. we are very grateful to all organisations and individuals working diligently to making this first world congress for integrative medicine & health in a great success. we are also pleased to announce that the opening welcome will in- clude the director general for the world health organization, dr margaret chan (on video). all plenary speakers are internationally recognized experts in the field of complementary and integrative le is distributed under the terms of the creative commons attribution . .org/licenses/by/ . /), which permits unrestricted use, distribution, and ive appropriate credit to the original author(s) and the source, provide a link to changes were made. the creative commons public domain dedication waiver ro/ . /) applies to the data made available in this article, unless otherwise stated. http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf http://www.ecim-iccmr.org/ / http://www.ecim-iccmr.org/ / http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / bmc complementary and alternative medicine , (suppl ): page of medicine such as josephine b briggs (us) and merlin willcox (uk) as keynote speakers for the theme traditional healing systems; klaus linde (ger) and michael moore (uk) for the research theme; lisa m wong (us) and töres theorell (sweden) will address the theme of arts and medicine; darong wu (china) and jeffery a dusek (us) are presenting on the theme of clinical care; and aviad haramati and da- vid eisenberg (both us) will close the congress with presentations on education. in addition, more than oral presentations in over parallel ses- sions will be in the program to provide newly emerging data from recent research projects, experiences from new treatment aspects in clinical care, descriptions of new models of education in medicine, information about integration of traditional healing systems in health care systems and new aspects on the integration of arts in medicine. in addition, more than posters will be presented in guided pos- ter sessions during the three days of the congress. to translate the congress goals and objectives into a tangible action for the field, a berlin agreement is being developed. with the title ‘social and self-responsibility in practicing and fostering integrate health and medicine globally,’ this document is meant to help shape the future of comprehensive patient care in integrative medicine, and addresses the responsibilities of all participants, including pa- tients and citizens, physicians and all colleagues working in the healthcare system. the berlin agreement has been developed by the wcimh congress presidents and the international organizing committee to create a document for further distribution to the scien- tific and clinical community and to health care stakeholders, decision makers, and politicians. we anticipate having the final version of the berlin agreement endorsed by a number of organizations prior to the congress and also soliciting the support of congress at the wcimh in berlin. our hope is that this document will provide an important impetus for further engagement world-wide after the congress has concluded. immediately before the start of wcimh on wednesday may rd there will be several high-quality pre-conference workshops covering all congress topics. reflecting the political situation in re- cent years, especially in europe, we have arranged for a unique half- day workshop on the topic: “refugees with chronic diseases between the middle-east and europe: the role of traditional and integrative medicine in bridging gaps”, the speakers are all from the middle east and europe and will address how integrative medicine may serve as an important element to overcome the problematic health situation of refugees around the world. we are convinced that the field of complementary and integrative medicine, including traditional healing systems and medicine and the arts, will benefit from the world congress on integrative medicine & health—a preeminent scientific international forum that is focused on highlighting advances in these thematic areas. we in- vite all practitioners, educators and researchers in the field of integra- tive medicine to come together, participate and engage together to make this congress an exciting meeting for the successful advance- ment of integrative medicine across the globe. i the berlin agreement: self-responsibility and social action in practicing and fostering integrative medicine and health globally april , bmc complementary and alternative medicine , (suppl ):i introduction faced by multiple challenges, including the rise of chronic, lifestyle related diseases, and grossly inequitable access to healthcare, we are committed to achieving the sustainable development goals to foster healthy lives and promote well-being for all ages. we are part of a global movement to orient care, and the education, research and policy that support it, toward a model that draws on biomedical, complementary and traditional medicine practices and respects mul- tiple philosophies. this approach to medicine and healthcare: “ … reaffirms the importance of the relationship between practi- tioner and patient, focuses on the whole person, is informed by evi- dence, and makes use of all appropriate therapeutic and lifestyle approaches, healthcare professionals and disciplines to achieve opti- mal health and healing.” our work stands on that advanced in at the alma-ata confer- ence that mobilized a movement for primary healthcare for all and officially declared the importance of integration of effective trad- itional practices to promote global health. today, the world health organization (who) advocates universal health coverage and inte- gration of safe and effective traditional providers and complemen- tary services into health service delivery, as well as self- care practices. these are key objectives of the who’s traditional medicine strategy - . we also affirm our alignment with the declara- tions from beijing in and stuttgart in and fully support calls on governments and non-governmental agencies to adopt, sup- port, fund, research and promote activities that advance evidence in- formed integrative care models. with this berlin agreement we call on ourselves as individuals to en- gage, to the best of our abilities, in the following: model health recognizing that our ability to impart and enhance health and well- being is not only performed by a social and professional health prac- tice, but is also informed by our own self-care and resilience, we strive to model personal engagement in health-creating practices. engage patients knowing that the most important strategy for fostering health is to engage patients in better lifestyle choices, we seek to develop our skills to activate patients to be self-responsible, to strengthen their resilience, and become captains of their own healing processes. in respect for the importance of natural processes as guides for en- hancing well-being, we educate and stimulate patient understanding of, and participation in, efforts to protect and sustain the natural environment. promote interprofessionalism and team care knowing that no single type of practitioner has all the answers that can be useful to a given patient, we individually seek to develop quality relationships with members of other disciplines and profes- sions to guarantee that we can quickly connect patients to the right services from the right practitioners and right professions at the right time; aware that such care may be provided via knowledge or practi- tioners from multiple global healing traditions, we personally commit to continuously broadening our understanding, awareness and en- gagement with other fields and resources. recognise the importance of traditional medicine in global healthcare given that traditional medical products, practices and practitioners are the main access to healthcare in most regions of the world, we highlight the importance of global investment to systematically de- velop best practices in these diverse systems that supports their safe and effective use and integration with biomedical practices. commit to evidence-informed dialogue and practice aware that a substantial portion of what is done in medicine and healthcare lacks a quality evidence base, we personally seek ever more effective ways to end polarizing dialogue and to stimulate col- laboration in our collective ability to research, create and operationalize optimal evidence informed integrative care. foster whole systems research committed to practices that respect the whole human being through use of diverse modalities and often through teams of practitioners, we personally champion development of methods, funding, and dis- semination of research that address chronic diseases from multiple etiologies and treatments that often are best resolved through whole person and whole systems approaches. aware that questions related to cost are often an obstacle to the system-wide implementation of these models and thus access to these services, we will personally endeavor to support heightened focus on research that includes the economic dimensions of integra- tive models of care. bmc complementary and alternative medicine , (suppl ): page of stimulate collaboration given the limitations and harm that can emanate for professions and stakeholders operating in isolation, we challenge ourselves individu- ally, and within our own professional organizations and institutions, to commit to programs and projects that stimulate increased respect, collaboration and understanding across disciplines, traditions, profes- sions, and stakeholders. bridge clinical care with prevention, community and public health knowing that clinical medical interventions represent but %– % of the factors that shape the health of a community, we actively en- gage in creative methods to deepen the preventive and lifestyle di- mensions of our individual practices while also connecting our practices and patients to community and public health resources. engage as change agents recognizing that imbalances in social, environmental, economic and political structures are major influences in the health of citizens, we seek to foster more equitable communities and societies. to better empower our own work, we seek to expand our abilities to work closer and more constructively with other professions, govern- ment agencies, non-governmental organizations, private and not for profit businesses, patients and other stakeholders in advancing inte- grative health and medicine. through engaging these personal and social responsibilities, we will improve individual patient care and positively influence the precon- ditions of healthcare systems, locally and globally, to achieve optimal health and healing in the individuals, communities and planet we serve. definition of integrative medicine and health. academic consortium for integrative medicine and health (www.imconsortium.org) this agreement was developed by the congress presidents (b. brinkhaus (germany), a. haramati (usa), t. falkenberg (sweden) and s.n. willich (germany) with j. weeks (usa) and the other members of the inter- national organizing committee (a.m.n. al-bedah (saudi arabia), h. boon (canada), p.a. caceres guido (argentina), m. khalil (saudi arabia), m.s. lee, (korea), c.a. lin (brazil), j. liu (china), e. schiff (israel), a. steel (australia), r. street (south africa) and k. watanabe (japan) of the world congress on integrative medicine and health in berlin and is supported by several societies such as the e.g. european society of integrative medicine (eu) academic collaborative for integrative health (usa) integrative health policy consortium (usa) academy of integrative health and medicine (usa) umbrella association of austrian doctors for holistic medicine (aut) association of anthroposophic physicians in germany (germany) interprofessional organization for anthroposophic medicine (germany) german physicians society of osteopathy (germany) international society for chinese medicine (germany) german physicians' association for ayurvedic medicine (germany) the society of complementary medicine in israel (israel) german association of homeopathic physicians (germany) latin american society of phytomedicine (latin america) argentine council of osteopaths - registry of osteopaths (argentina) first ayurveda health foundation (argentina) spanish federation of integrative medicine (spain) as well as individual clinicians, researchers, educators and policy-makers. plenaries plenary session i s the lessons from integrative medicine: sometimes less really is more josephine p briggs nccih, nih, bethesda, md, usa bmc complementary and alternative medicine , (suppl ):s it is widely recognized that our health care system does too much of some things, and too little of others. learning what actually works and for whom – finding the true balance between benefit and harm - is the charge to the biomedical research enterprise. negative findings are as important a product of evidence-based medicine as the positives. three examples will be explored: cancer screening, pain management, and end-of life care. critical examination of common health care practices in these areas is yielding surprises; careful examination of data from observational studies and large scale randomized trials is frequently finding less benefit than expected (or even harm) of some drugs, widely used screening strategies, and other health interventions; and in some cases a more favorable benefit to harm ratio of gentle ‘old-fashioned’ approaches that come from outside the mainstream. nevertheless, translation of evidence into good care remains prob- lematic. increasingly it is understood that the answers will lie in part with greater patient engagement and shared decision making. inte- grative medicine practitioners are defining an innovative style of practice that provides a model for greater openness to the patient’s voice. health care decision making needs to more effectively marry the insights that come from evidence-based medicine with the indi- vidual values of each patient. integrative practitioners tap into an interest of patients in greater involvement and often in less use of technology. while the input and expertise of the health care practi- tioner is essential for good care, so is an active, partnership with the patient and the flexibility to adapt to the patient’s concerns. s traditional medicine and primary healthcare in africa merlin willcox (merlin.willcox@phc.ox.ac.uk) department of primary care and population sciences, university of southampton, aldermoor health centre, coxford rd, southampton st, uk bmc complementary and alternative medicine , (suppl ):s background it is often stated that % of the world’s population relies on traditional medicine for their primary health care [ ]. however very few countries in africa have attempted to integrate traditional and modern healing systems for the benefit of patients. on the contrary, traditional medi- cine has been widely discouraged and some practices even banned. we set out to investigate ways in which traditional and modern med- ical systems could better collaborate, for the benefit of patients. methods surveys were undertaken in mali, uganda and ethiopia of treatments used by patients for febrile illnesses, and associated outcomes. in mali, we selected the plant associated with the best outcomes for further clinical research using a “reverse pharmacology” approach [ ], in order to develop an improved traditional medicine. in mali and uganda, the “confidential enquiry” methodology was used to investi- gate maternal, perinatal and child deaths in a total of subdistricts over years. local panels analysed how deaths could have been avoided by improvements in both traditional and modern medical systems, and made recommendations to this effect. results prevalence of use of traditional medicine for febrile illnesses varied widely, from % in the apac district of uganda, to % in the sikasso area of mali [ ]. of plants traditionally used in mali, argemone mexicana was the only one systematically associated with clinical re- covery. this was further investigated in a dose-escalating trial [ ], and then in a randomised controlled trial [ ]. its use has since in- creased. the confidential enquiry revealed that traditional healers and traditional birth attendants had been involved in the care of % of children who had died (ranging from % to % in different districts), whereas official health centres and hospitals had been in- volved in % of cases in mali and % in uganda. the majority of children who had consulted a traditional healer had not been re- ferred in a timely manner. training courses were organised to im- prove recognition and referral of severe illnesses. conclusions in africa, usage of traditional medicine in primary care is still preva- lent, at least for febrile illness in children, including illnesses which are eventually fatal. the “reverse pharmacology” approach facilitated the development of an evidence-based improved traditional medi- cine in mali, which became more widely used. the “confidential en- quiry” approach engaged both traditional and modern practitioners http://www.imconsortium.org/ bmc complementary and alternative medicine , (suppl ): page of together in a discussion of what could be done to reduce childhood deaths. references . bannerman r, burton j, wen-chieh c. traditional medicine and health care coverage. geneva: world health organisation; . . willcox m, graz b, falquet j, diakite c, giani s, diallo d. a "reverse pharmacology" approach for developing an anti-malarial phytomedicine. malaria journal. ; (suppl ):s . . diallo d, graz b, falquet j, traore ak, giani s, mounkoro pp, et al. malaria treatment in remote areas of mali: use of modern and traditional medicines, patient outcome. trans r soc trop med hyg. ; ( ): - . . willcox ml, graz b, falquet j, sidibe o, forster m, diallo d. argemone mexicana decoction for the treatment of uncomplicated falciparum malaria. trans r soc trop med hyg. ; ( ): - . . graz b, willcox ml, diakite c, falquet j, dackuo f, sidibe o, et al. argemone mexicana decoction versus artesunate-amodiaquine for the management of malaria in mali: policy and public-health implications. trans r soc trop med hyg. ; ( ): - . plenary session ii s evidence of effectiveness but not efficacy - why many complementary therapies are so hard to accept for biomedicine klaus linde (klaus.linde@tum.de) institute of general practice, technical university munich, munich, germany bmc complementary and alternative medicine , (suppl ):s while the integration of complementary therapies into health care practice continues to progress in many countries, the scientific and academic debate on many of these therapies seems to heat up again in the last decade after a period of relative openness. interestingly, both those attacking and defending complementary medicine claim that their view is evidence-based. in my presentation i will try to analyze important reasons why there is so much, often fierce debate. using acupuncture and homeopathy as examples i will show how the same evidence is sometimes interpreted completely different. the more controversial the topic, the more interpretation is shaped by the influence of prior beliefs, personal preference of different types of evidences, previous knowledge and experience. the main problem for the acceptance of many complementary therapies is not the lack of evidence that patients benefit but weak theoretical foun- dations (leading again to stronger demand of proof of specificity). i will explain why “specificity” is such a crucial tool for demarcation of the unacceptable, both for science and the medical profession. at the same time, many of these “intellectual” problems do not seem to be relevant in the pragmatic reality of everyday practice. in my view there are two important consequences of these consider- ations: ) a public debate is needed whether “scientific nonsense” could be effective in practice – and if so, whether it should be reim- bursed by public health insurance; ) there is a strong need for more research on how complementary therapies work, but this research should not take the often naïve and mechanistic theoretical concepts of these therapies as granted. plenary session iii s arts in health promotion töres theorell , department of neuroscience, karolinska institute, stockholm, sweden; stress research institute, stockholm university, stockholm, sweden bmc complementary and alternative medicine , (suppl ):s arts (music, writing, dance, visual arts and theatre) have a strong potential in health promotion. health can be defined in many ways, ranging from strict absence of medical conditions to well-being in a wide social sense [ ]. when we discuss musical experiences, flow is potentially a central concept in health promotion. the flow concept is particularly applicable to music performance. when a subject has practiced a difficult music piece and is finally able to perform it well, a high level of arousal and at the same time a high degree of elation arises. our own experiments indicate that this state is associated with a concomitant activation of the sympathetic and parasympathetic systems. a subject who is allowed to have these rare experiences repeatedly collects flow experiences which add to a high quality of life. this would correspond to life-long flow capital. flow experiences can arise in several domains, in sports, while performing theatre, while giving a lecture etc. according to our theory flow experiences add importantly to quality of life. alexithymia, inability to differentiate, describe and communicate feel- ings, is a central concept in psychosomatic medicine. our research has shown that competence in arts is associated with a good ability to handle emotions. each one of the artistic skills (see above) adds statistically to emotional ability and there are also additive effects. since alexithymia has an established role in early stages of hyperten- sion, burnout syndrome and abuse of alcohol these relationships are of importance to health promotion. however, our twin research has shown that a large part of the relationship between musical practice and alexithymia is genetically determined [ , ]. therefore relatively large controlled intervention studies are required in order to estab- lish health effects of musical experiences. an rct study, the culture palette study, performed on health care centres in stockholm, showed that cultural activities organized for women with burnout syndrome for three months twice a week were followed by improved burnout and alexithymia scores which were not seen in the control group [ ]. the alexithymia changes were even more pronounced three months after the cultural intervention than immediately after the end, findings which may indicate that health promotion pro- cesses have started. efforts to stimulate cultural activities should start in childhood [ ]. references . theorell t: psychological health effects of musical experiences: theories, studies, and reflections in music health science dordrecht, netherlands: springer, . theorell tp, lennartsson ak, mosing ma, ullén f. musical activity and emotional competence - a twin study. front psychol. jul ; : . doi: . /fpsyg. . . . lennartsson ak, bojner horwitz e, theorell t and ullén f ( ) lack of creative artistic achievement (writing, music, dance, theatre, visual arts) is related to alexithymia. creativity research journal. in press . grape viding c, osika w, theorell t, kowalski j, hallqvist j and bojner horwitz e ( ) ”the culture palette” a randomized intervention study for women with burnout symptoms in sweden. brit j med practitioners ; ( ):a . theorell t, lennartsson ak, madison g, mosing ma, ullén f. predictors of continued playing or singing–from childhood and adolescence to adult years. acta paediatr. mar; ( ): - . doi: . /apa. s healing the community through the arts: framing and reflections lisa m. wong (lisamwong@gmail.com) arts and humanities initiative, harvard medical school, boston, ma , usa bmc complementary and alternative medicine , (suppl ):s the arts are an essential element of human life that foster health, wellness and balance. through the arts, the relationship between practitioner and patient can be affirmed and deepened. the arts in medicine focus on the whole person, making use of several therapeutic approaches: through dance, individuals living with movement disorders enhance their flexibility with grace and confidence; through mask-making, wounded veterans find a voice as they struggle with ptsd. integrating the arts into the practice of medicine presents an exciting new intersection of fields. important new questions emerge. what is the role of the physician musician? how can the experience and knowledge of music therapist, neuroscientist and physician best be utilized to institute a personalized care plan for the patient? what http://dx.doi.org/ . /fpsyg. . http://dx.doi.org/ . /apa. bmc complementary and alternative medicine , (suppl ): page of does evidence-based practice look like through the lens of the artist in healthcare settings? caregivers and healthcare providers in training also benefit from the integration of the arts into their practice. narrative medicine encour- ages healthcare providers to understand their own story, as well as the patient’s story, beyond the diagnosis. looking deeply at art in the museum enhances observation skills, critical thinking, and com- munication. analyzing, playing and listening to music invites deeper reflection and analysis of complex diagnoses. join the growing number of physicians, musicians, therapists, neuro- scientists, and patients who are embracing the arts as a critical as- pect of integrative medicine. together we will pave the way forward, discover new parallels, learn from each other, and ultimately improve the way we care for our patients and each other. plenary session iv s integrating complementary and integrative health therapies into us hospitals – the role of practice based research in guiding the field jeffrey dusek psychosomatic medicine, neuropsychology, allina health, minneapolis, mn, usa bmc complementary and alternative medicine , (suppl ):s consumer demand for complementary and integrative health (cih) therapies continues to grow in the united states (us). as a result, about years ago, several us health systems were early adopters in the inclusion of cih therapies into hospital settings. several randomized controlled trials provided initial evidence that specific cih therapies (e.g., acupuncture) were efficacious for relief of symptoms (e.g., pain) in certain hospitalized patient populations (e.g., post-surgery). additional studies suggested that the cih therapies were safe for these patients. while results of the randomized trials were important, translation of these results into clinical practice has been challenging due to the fact that neither health care administrators, nor clinical providers are aware of which cih therapy would be most effective for specific condition relief in specific patient populations. an important question being asked is: can the right patient be provided the right cih therapy for the right symptom relief outcome? this presentation will include a description of the development and evolution of one early adopter model for the integration of cih therapies services into a us hospital setting. the presentation will also include results from a large national institutes of health practice based research evaluation in the early adopter model to explore the effectiveness of different cih therapies on pain in varied clinical populations. the presentation will detail lessons learned from these experiences that will provide health care system administrators and clinical providers with guidance for efficient delivery of cih therapies in us hospital settings and perhaps across the world. s integrating cam into hospital care: prospectives from china (abstract id ) darong wu nd affiliated hospital of guangzhou university of chinese medicine, guangzhou, china bmc complementary and alternative medicine , (suppl ):s objective the integration of traditional chinese medicine(tcm)and western medi- cine in china was initiated more than a century ago. since early s, tcm as one of the important component of complementary and alter- native medicine (cam), has been integrated into hospital care, including inpatients"medical services, due to several practical reasons, e.g. china"s health policy, chinese traditions, patient"s promises and claims, etc. methods there are mainly two types of model in terms of integration tcm into inpatient/hospital settings in china, ( ) disease-based model, which has been adopted in most of the western medicine hospitals, especially in the departments of cardiovascular disease, tumor dis- ease, or other rehabilitation related diseases, or virus infection dis- eases; ( ) pattern diagnose-based model, usually is applied in the hospitals of integrative medicine or tcm medicine. despite the types of model, more and more physicians and other health care profes- sionals realize that it is important to help the patients to make in- formed health care decision during the integration procedure. and it shall combine the management methods which have been success- fully applied in hospital operation, including clinical pathways and lean management. results clinical pathways has been adopted to efficient the progress of inte- grating tcm into inpatient services since in china. researches found that it might help to reduce the length of stay, to maintain the cost within a reasonable range, and would still keep the quality of medical services in the same or even higher levels. the ideas of evidence-based practice, patient-informed decision,etc, have been embodied, while we would not ignore any "unexpected" outcomes from clinical practiceswhichmight be "new" ideas for further re- searches orfuture evidences. discussion ntegrating tcm into inpatient services has six-decade history in china, any further development in this area may face both opportun- ities and challenges ahead. keywords: integration, complementary and alternative medicine (cam), traditional chinese medicine (tcm), hospital care, china plenary session v s nutrition and lifestyle education in an era of obesity and diabetes – might “teaching kitchens” serve as catalysts of personal and societal transformation? david eisenberg department of nutrition, harvard university t h chan school of public health, boston, ma , usa bmc complementary and alternative medicine , (suppl ):s to address dramatic global increases in obesity, diabetes and other lifestyle-related diseases, the medical establishment must invent and experiment with novel approaches whereby patients – and caregivers as role models – learn to eat, cook, move and think differently. as a result of this presentation, participants will: � review trends in obesity, diabetes and other lifestyle-related chronic diseases in the us and globally � be introduced to the conceptual construct of a “teaching kitchen”. this includes educational approaches which combine: ( ) nutrition education, ( ) hands-on culinary instruction, ( ) mindfulness training, ( ) enhanced movement and exercise, and ( ) optimal behavior change strategies including health coaching � appreciate the unique role played by mindfulness in these curricula � learn about teaching kitchen prototypes being developed and evaluated at universities, medical schools, hospitals, corporate workplaces, colleges, k- schools and community settings across the us, europe and asia � envision future models of medical education and healthcare delivery which focus on both: (a) “salutogenesis”, the creation and maintenance of health and wellness, in combination with (b) “pathogenesis”, which typically focuses on disease diagnosis and treatment, in an effort to enhance public health and reduce total healthcare related expenditures � be introduced to the recently established “teaching kitchen collaborative” which includes more than institutions with teaching kitchens, all of whom are committed to (a) establishing best practices; (b) developing shared research strategies; and (c) participating in multi-site studies to assess the clinical and financial impact of these emerging models bmc complementary and alternative medicine , (suppl ): page of s addressing chronic stress and burnout in health professionals: the educational imperative for incorporating mindfulness for self-care aviad haramati school of medicine, georgetown university, washington d.c., united states bmc complementary and alternative medicine , (suppl ):s recent reports suggest that chronic stress and burnout among physicians are pervasive problems and cause for concern. more than half of all physicians in the united states experience some element of burnout, and this can lead to changes in the patient-provider relationship and adversely impact on the quality of care. in some specialties, the rates are even higher. this trend may begin earlier with the observed decline in empathy during medical student training and the alarming rates of burnout in medical and other students in the health professions. in response, various groups are developing interventions with medical students, residents and faculty to address the rise in burnout and the decline in professional resiliency. keys to this work are themes of self-awareness, mindfulness and exploring domains of control and meaning in the clinical encounter. in this plenary presentation, dr. haramati will review published outcomes on interventions using mindfulness approaches to reduce stress and burnout and improve wellbeing. a physiologic framework will be provided to explain why mindfulness appears to be effective. he will also share his perspective on why it is essential to incorporate mind-body techniques into the training curriculum for all health professionals—something that will require both skill and courage. pre-workshops research a qualitative research methods in complementary and integrative medicine bettina berger (bettina.berger@uni-wh.de) department of health, university of witten/herdecke, witten/herdecke, germany bmc complementary and alternative medicine , (suppl ):a this workshop will give an insight in qualitative research methods for complementary and integrative medicine, teach how to reflect quality criteria of qualitative research methodology and try different ways to interpret data to know more about the diversity of qualita- tive methodologies. a getting your work published – tips from editors kathi kemper (kathi.kemper.md@gmail.com) osu, blacklick, oh, united states bmc complementary and alternative medicine , (suppl ):a this will be an interactive session led by three editors from promin- ent cam journals – bmc cam, complementary therapies in medi- cine, and journal of alternative and complementary medicine. the pros and cons of submitting to different journals, the availability and recommended use of writing guidelines from the equator network will be reviewed and the participants will be offered a simple, hands on approach to writing a journal article without getting bogged down in writer’s block. a horizon – networking and creating working groups beate stock-schröer , hedda sützl-klein carstens-foundation and forum, d- essen, germany; esihr (european society for integrative health care), a- vienna, austria correspondence: hedda sützl-klein (hedda.suetzl-klein@aon.at) bmc complementary and alternative medicine , (suppl ):a during the preconference of th wcimh (world congress integra- tive medicine & health )/ th ecim (european congress of inte- grative medicine) a horizon -networking workshop will offer researchers and potential participants of horizon -projects the opportunity to network, share information and create working groups for research proposals involving integrative medicine and multimodal approaches. the workshop was initiated by ddr. hedda suetzl-klein and dr. beate stock-schröer with support from re- searchers of the forum research network (forum universitärer arbeitsgruppen für naturheilverfahren und komplementärmedizin: http://www.uniforum-naturheilkunde.de). background and goals complementary and integrative medicine is supposed to provide op- portunities for highly personalised medicine and other challenges of the specific programme „health, demographic change and well-being” of horizon , the “eu framework programme for research and innovation” from – . the goals of this pre-conference workshop are to analyse the current (and upcoming) work programme, to discuss potential topics of research and to build working groups for horizon proposals. as well as defining topics, networking is a major aim, in order to form appropriate teams to formulate research proposals and increase the number of promising eu-projects (horizon -research pro- jects) involving integrative medicine issues and multimodal approaches. speakers and working group leaders dr. wolfgang weidenhammer (kokonat-tu munich, cambrella pro- ject coordinator) will analyse work programmes and current develop- ments, dr. pierre madl (university of salzburg, participant in fp research projects: cato, bridge, nanovalid) will share experience and lessons learned from former applications and successful eu-research projects. to build working groups for horizon applications, the re- searchers are supported by prof. dr. jost langhorst (university of duisburg-essen, department of internal and integrative medi- cine, kliniken essen-mitte), dr. wolfgang weidenhammer (koko- nat-tu munich), prof. dr. roman huber (university of freiburg, center for complementary medicine, institute for environmental health sciences and hospital infection control, focussing on: prevention and treatment of chronic diseases), pd dr. kristjan plaetzer (university of salzburg: amr and antimicrobial strat- egies based on natural resources), doz. dr. alexander haslberger (university of vienna: epigenetically active nutrition in integra- tive medicine therapies and prevention) and dr. pierre madl (university of salzburg: integrative medicine, health & biophysics). clinical care a integrated cchronic care model and diabetes: the project as implemented within the center of integrated medicine of the hospital of pitigliano rosaria ferreri (tyvvf@tin.it) hospital centre of integrated medicine, hospital of pitiglian,o asl sudest toscana, grosseto, italy bmc complementary and alternative medicine , (suppl ):a the care of people with diabetes is, all over the developed world, and now, even in countries in the developing world, one of the main problems of organization of systems of health protection. this goes far beyond the meaning of the care of a single disease, but rather is almost a paradigm of the chronic care model, which, in most companies in the world, it is epidemiologically prevalent today. the challenge of this project is to develop an integrated protocol including homeopathy and phytotherapy to evaluate how, where and when it is possible to introduce the integrated protocol in the course of the ccm diabetes. proposals has been accepted by the chief of medicine department of the hospital of pitigliano. we are going to study different categories of diabetic patients in- cluded in the project: http://www.uniforum-naturheilkunde.de/ bmc complementary and alternative medicine , (suppl ): page of ) patients that have high value of emoglobina glicata, despite their anti diabetic oral therapy; ) patients that suffer from comorbidities (that could have influenced their metabolic status and the course of their diabetes) we have approached the patients, collecting their informed consent, and establishing the integrated protocol to be adopted in each of the two categories. the protocols include: – an homeopathic remedy – a phytotherapy compound, made of two plants extracts a group of diabetic patients have been enrolled, ten of them were affected by diabetes and other ten have comorbidities; for each of them, we have collected data related to: blood sugar level, gly- cated haemoglobin, renal and hepatic function, blood pressure, (other parameters that will be included in a second phase of the pro- ject). to each of them we have given: a questionnary (as sf ) for the quality of life and adl skills for daily ability; we have also used edmonton scales for the assessment of symptoms and a card for the consumption of conventional drugs, to monitoring the use of an- tidiabetic drugs. results and discussion we describe: � a new organisational model, which includes new roles and new functions. � a new common pathway. � how to identify proactive patient using risk stratification tools. � how we have improved hospital infrastructure, which supports sharing information and patient monitoring. a common set of shared objectives and indicators linked to health outcomes and process improvement have been adepte and we"ll show the results in terms of: � ameliorating qol: from to % of them declare improvements in the general health feelings � improving hb glycate value : in weeks have been improved about - %- � reducing use of conventional drugs: preliminary data will be shown a phyto-nutrition and diabetes rosaria ferreri (tyvvf@tin.it) hospital centre of integrated medicine, hospital of pitigliano, asl sudest toscana, grosseto, italy bmc complementary and alternative medicine , (suppl ):a introduction managing blood glucose and preventing complications in diabetes care are important goals for anyone with this chronic disease. nutri- ents present in various foods play an important role in maintaining the normal functions of the human body and some phytonutrients help to lower blood glucose. others protect insulin-producing cells in the pancreas from oxidative damage. but where can we get these nutrients? the best challenge is to have them through a studied diet, not only based upon calories and nutrients, but also taking in ac- count the so called phyto-nutrients. that also why, recently, vegeter- ian regimen has been proposed to be the best to cope with diabetes. materials and methods phytonutrients are the plant nutrients with specific biological activ- ities that support human health. due to the fact that some of these nutrients have a great and recognized role in the help of chronic conditions, as diabetes is, we have tried to include them in the com- position of an ideal diet, not based upon the energetic values but on phytonutrients and their orac value. discussion well show the composition of an ideal diet for patients with dia- betes, that could be more helpful in the control of hyper insulin- ism and also in the control of oxidation process. we propose our rationale for the choice of foods and their distribution during the day, based upon the best research in the field of plant-derived preparations, such as pomegranate seed oil[ ], grape skin extract [ ], blood orange extract [ ] barley b-glucan [ ], anthocyanins from cherries [ ], and green tea ( )-epigallocatechin- [ ]. we also show that this strategy is also comparatively cheap, easy to be used by aged people and could significantly reduce health care costs. bibliography . vroegrijk, i.o et al. - - pomegranate seed oil, a rich source of punicic acid, prevents dietinduced obesity and insulin resistance in mice. food chem. toxicol. : – . hogan, s. et al - -. dietary supplementation of grape skin extract improves glycemia and inflammation in diet-induced obese mice fed a western high fat diet. j. agric. food chem. : – . titta, l., et al. - -. blood orange juice inhibits fat accumulation in mice. int. j. obes. (lond.) : – . choi, j.s et al – - consumption of barley beta-glucan amelio- rates fatty liver and insulin resistance in mice fed a high-fat diet. mol. nutr. food res. : – . jayaprakasam, b. et al - - amelioration of obesity and glucose intolerance in highfat-fed c bl/ mice by anthocyanins and ursolic acid in cornelian cherry (cornus mas). j. agric. food chem. : – . lee, m.s et al – - green tea (-)-epigallocatechin- -gallate re- duces body weight with regulation of multiple genes expression in adipose tissue of diet-induced obese mice. ann. nutr. metab. : – a a comprehensive integrative approach to the management of chronic pain gary kaplan the kaplan center for integrative medicine, georgetown university, mclean, va, united states bmc complementary and alternative medicine , (suppl ):a “chronic pain” and “depression” are not actionable diagnoses; they are, instead, symptoms of a neuroinflammatory disease of multiple and compounding aetiologies. exploring the proposal that accepted medical practices often fail to help chronic pain sufferers because they have been based on a fundamental mis- understanding of the illness itself, the goal of this workshop is to understand the pathophysiology of chronic pain and depres- sion according to a neuroinflammatory model as well as the multiple aetiologies of neuroinflammation. the participants will learn how to take a comprehensive, chronic-pain history according to the neuroinflammatory model of chronic pain and, based on that, create an integrative treatment. a visit of gemeinschaftskrankenhaus havelhoehe: anthroposophic medicine in workaday life for patient centred care in a capital town ( . - . a.m, half day) harald matthes hospital havelhöhe, berlin, germany bmc complementary and alternative medicine , (suppl ):a bmc complementary and alternative medicine , (suppl ): page of on this excursion the participants will experience the concept of the anthroposophic clinic “havelhoehe” and get to know practical inte- grative concepts. the program includes a guided visit in different (optional) fields: a) from the intracardiac catheter to the heart school (life style modification) b) integrative oncology in a certified oncol- ogy centre (onkozert) c) integrative pain unit d) integrative psycho- somatic medicine e) integrative concepts of functional diseases (ibs) f) the self-governing concept of the clinic. time: . am - . pm (including bus transfer) a introduction to osteopathic medicine – a hands-on workshop gabriele rotter (gabriele.rotter@charite.de) institute for social medicine, epidemiology and health economics, charité university hospital, berlin, germany bmc complementary and alternative medicine , (suppl ):a this workshop offers an introduction to osteopathic medicine and is intended for medical students and medical doctors with few or no knowledge in osteopathic medicine. the participants should learn basic osteopathic principles, their indication and contraindication as well as the integration of osteopathy into the overall treatment strat- egy of a patient. during the hands-on part of the workshop partici- pants are given a practical demonstration of basic examination procedure with special emphasis on palpation, as well as selected treatment techniques. education a implementing skills from hypnosis and touch therapies to improve doctor-patient communication elad schiff , zahi arnon , internal medicine and complementary medicine service, bnai zion medical center, haifa, israel; complementary-integrative surgery service, bnai zion medical center, haifa, israel; the emek yezreel academic college, yezreel valley, israel correspondence: elad schiff bmc complementary and alternative medicine , (suppl ):a currently, education toward optimal physician-patient communica- tion does not take into account the impact of positive and negative suggestions on health and disease. moreover, there is vast evidence in the medical literature that such suggestions can trigger placebo, or nocebo effects respectively. as an example, saying to a patient "here are your pain pills" implies that the patient owns the pain (nocebo), whereas "here are medications that will help you reduce pain, and increase your comfort" activate patient empowerment and control over pain (placebo). implementing fundamentals of hypnosis to suggestions embedded in communication with patients can tre- mendously improve the outcomes of such encounters. hypnosis is a mind-body technique aimed to activate innate healing forces by using words with positive suggestions as well as non- verbal communication such as touch. the effect of hypnosis is thought to occur best in a "trance state" where the sub-conscious mind is more receptive to suggestions, which are conveyed to the nervous & immune systems. in contrast to the common belief that hypnosis requires patients to be calm and relaxed, hypnotic trance due to stressful health conditions is very common. actually, patients are in spontaneous trance state during most encounters with physi- cians. hypnotic trance places patients in a state-of-mind where they are highly influenced by suggestions- for the good (placebo), and for the bad (nocebo). consequently, physicians could learn how to acti- vate patient's healing forces by using the correct suggestions in ver- bal and non-verbal communication (i.e. touch and body gestures), based on fundamentals of hypnosis. the workshop will introduce health-providers and medical students to hypnotic based communication that potentiates the healing capacity of patients. vid- eos of real patient-physician encounters as well and vivid demonstra- tions, and hands on techniques to improve physical exam skills, are built in the workshop. a developing pre-residency core entrustable professional activities in integrative medicine: a skills-based workshop for medical educators and students eckhard hahn (eckhart.hahn@uk-erlangen.de) medicine i, university hospital erlangen, erlangen, , germany bmc complementary and alternative medicine , (suppl ):a the goal of this workshop is to provide the participants with a hands-on opportunity to create core entrustable professional activities (epas) in integrative medicine for trainees entering residency and post-graduate training. epas are becoming an important part of out- comes based education and are increasingly looked at being essen- tial in preparing students for graduate medical training. this workshop will build on precourse assignments, start with an inter- active summary of this knowledge and will then shift to experiential as we create the opportunity for participants to work in groups and develop team-based core epas in integrative medicine that include interprofessional practice. outline of workshop . participants introduce themselves min. . workshop activity: min. q&a min how to develop a team-based epa – interactive summary of pre- course assigment. . work in small groups with facilitator: creating a blueprint for team-based epas in integrative medicine. min. . first patient encounter . self-care . treatment plan (a patient with breast cancer) coffee break min. . experiential learning of im-epas: team-based practice. min. . a simulated im patient encounter . a simulated self-care session (patient with breast cancer) . a simulated assessment session of im-epa (treatment plan for patient with breast cancer). . debriefing – later letters. min total time minutes precourse assignment: . integrative medicine in the continuum of medical education; . entrustable professional activities (epas) - especially core epas for entering residency; . interprofessional aspects of integrative medicine (the team- based approach). a differentiating the psychological and physiological mechanisms of relaxation versus mindfulness: an experiential workshop and clinical implications christina m. luberto (cluberto@mgh.harvard.edu) department of psychiatry, massachusetts general hospital, boston ma, usa bmc complementary and alternative medicine , (suppl ):a bmc complementary and alternative medicine , (suppl ): page of mind-body therapies, used to treat a variety of stress and pain- related conditions, often include the use of both relaxation tech- niques and mindfulness exercises. relaxation techniques are inter- ventions such as progressive muscle relaxation and diaphragmatic breathing that are intended to alter physiological and emotional states by eliciting the relaxation response. mindfulness techniques, which can be taught using stand-alone exercises (e.g., mindful breathing, mindful sitting) or formal mindfulness-based interventions (e.g., mindfulness-based stress reduction), are intended to promote present moment awareness and acceptance as a way of enhancing self-regulation. thus, there is a distinct difference in both the intention and, ultimately, the psychological and physiological mecha- nisms associated with these two approaches - which have important implications for informing clinical practice. unfortunately, over time, the term “mind-body therapies” has become synonymous with both the use of relaxation therapies and mindfulness techniques, thereby obscuring these critical differences. therefore, the primary purpose of this workshop is to provide partici- pants with a deeper understanding of the differences in the psycho- logical and physiological mechanisms associated with relaxation versus mindfulness techniques, using a combination of experiential exercises and brief didactics. four relaxation and mindfulness exer- cises ( - minutes each) will be used throughout the workshop to allow participants to experientially learn the difference between these two approaches. each exercise will be followed by paired and/ or group discussions to provide opportunities for processing and re- flection. three didactics will be interspersed throughout the work- shop in order to supplement the experiential exercises: ( ) theoretical/conceptual similarities and differences between relaxation and mindfulness approaches; ( ) extant research documenting differ- ences in psychological and physiological mechanisms and outcomes between these approaches; and ( ) implications for clinical practice and research settings. case examples will be used to exemplify when relaxation versus mindfulness training would be most clinically indi- cated based on evidence-based recommendations. this session de- serves to be included in the program because it provides a depth of theoretical and practical knowledge that can help clinicians and re- searchers alike more accurately differentiate between types of mind- body practices to select interventions best suited to their clients’ needs. this level of nuance, comparing and contrasting specific mind-body approaches, is also an important next step for moving the field of mind-body medicine forward. a meditation and medicine – investigating the underlying laws and forces david martin, silke schwarz children’s hospital, university of tübingen, tübingen, , germany correspondence: david martin (david.martin@med.uni-tuebingen.de) bmc complementary and alternative medicine , (suppl ):a meditation is increasingly becoming a relevant health factor: what do students and physicians need to know? what are the underlying factors and „natural laws“? what actually happens during meditation? this experiential workshop focuses on the different types of medita- tion and what they can do for students, physicians, medical personnel and patients. a developing clinical clerkships in integrative medicine diethard tauschel integrated curriculum for anthroposophic medicine, faculty of health, university of witten/herdecke, herdecke, germany bmc complementary and alternative medicine , (suppl ):a in this workshop the participants will discover possibilities and prob- lems in establishing, conducting and sustainably developing clinical clerkships in integrative medicine (im). this will include aspects of curriculum development like needs assessment, finding and setting adequate goals, learning objectives and the use of feedback and evaluation. participants will be given an overview about the opportunities and challenges of im clerkships, examples from years of experiences of establishing and conducting im clerkships within the integrated curriculum for anthroposophic medicine. traditional healing systems a herbal medicine research: from margins to mainstream andrew flower university of southampton, southampton, so st, united kingdom bmc complementary and alternative medicine , (suppl ):a this pre-congress-workshop allows the participant to explore differ- ent research methods used to investigate herbal medicines as done at the university of southampton. the key domains of herbal medicine research such as quality control, batch consistency, the importance of stabilising levels of known ac- tive compounds, interactions with pharmaceuticals, model validity, and herbal pharmacokinetics will be considered. besides, the idea is to develop a model for future research into herbal medicines that can incorporate a properly phased, iterative programme of research that will optimise both pragmatic rigour and the clinical relevance of these investigations. a cost and health benefits from integrating new age ayurveda into european health systems harsha gramminger , euroved gmbh, bell, germany; european ayurveda association, bell, germany bmc complementary and alternative medicine , (suppl ):a general health costs are spiraling in all developed and developing nations of the world. in , germany spent almost € billion on health. this was an increase of about € , billion compared to : , € in vs. , € in per inhabitant. type diabetes, obesity, hyperlipidemia, hypertension & other “civilization” diseases are the main factors for these costs. with over million sufferers (in and growing), diabetes mellitus is one of the most widespread diseases in germany. serious “secondary com- plications” and “associated diseases”/co-morbidities include heart at- tack, stroke, athlete’s foot etc. total costs € . . includes three components: direct - disease (), indirect () & associated complication () obesity is another new global epidemic and set to become the “number one health problem globally” by the year . in % of all germans were overweight, which is about . million people! the associated conditions include: type diabetes, hyper- tension, vascular diseases, stroke, coronary heart disease, gall stones, cancer, sleep apnea syndrome, diseases of the joints and of the skin and more. clinical and practical experience is proven, that ayurveda is able to improve the condition of both type diabetes and obes- ity. furthermore it is able by its lifestyle guidance and preventive hol- istic approach, to reduce and avoid follow – up diseases and costs. the presentation will show with facts and figures how the wisdom of ayurveda can be followed for the new age to prevent, manage and cure such diseases. figures for savings to the european health care costs will be presented and discussed. the presentation will show with facts and figures how the wisdom of ayurveda can be followed bmc complementary and alternative medicine , (suppl ): page of for the new age to prevent, manage and cure such diseases. figures for savings to the european health care costs will be presented and discussed. a ayurvedic herbs in modern times hedwig h gupta (info@dr-gupta.de) private medical practice, ludwigsburg, , germany bmc complementary and alternative medicine , (suppl ):a ayurveda is an asian medical system with a history of more than three thousand years. through the centuries, as documented by ayurvedic texts, the mate- ria medica kept changing slightly as new plants were described and added. but all in all the system stayed stable as the population using ayurvedic herbs grew only slowly and the usage of ayurvedic plants was confined mainly to southern asia. with the globalization of medical systems and the development of modern life ayurveda faces tremendous changes which give rise to many questions that will be discussed in this presentation as: how can ayurveda be practiced if more and more people use its herbs? many classically described herbs are grown in the himalayans or other areas of a very specific climate. is it feasable and sensible for the whole world to use these plants? what effects do environmental changes, industrial agriculture of herbs and pollution have on the quality of herbs? how can locally grown plants be understood and integrated in a modern and ecologically correct ayurvedic therapy? a west meets east - differences in general attitudes between european and indian ayurveda-patients sn gupta , (guptayurveda@yahoo.com) kayacikitsa (pg) department, j. s. ayurveda college & p.d. patel ayurveda hospital, nadiad (gujarat), india; academic advisory board, european academy of ayurveda, birstein, germany bmc complementary and alternative medicine , (suppl ):a human behavior is always influenced by sociocultural environments. this is applicable also for patients, particularly regarding their atti- tude towards their disease, its treatment, their health service pro- viders and co-patients. with a growing popularity of ayurveda, contacts of european patients with ayurvedic doctors are also grow- ing. socio-cultural differences may cause bilateral difficulties, often in the form of a cultural shock. to develop a physician-patient rapport, it is essential for the physician to understand these aspects, in which european patients differ from their indian counterparts. the article is not based on a scientific research, but on a years’ observation in treating a great number of european patients in india and in germany. faith and evidence for indians faith in the system is prime. for them the tradition of thousands of years is not challengeable. while in the west, an evi- dence based rational approach is the dominant factor. decisions and actions are less emotionally driven as in indians. religious and spirit- ual beliefs play important roles in the context of healing for indian patients, while europeans expect scientifically evaluated therapies. individuality and relationship familial and social bonds in india are very strong therefore family members or close friends of a patient take care of the basic needs even a decision about treatment. while in the west, since the indi- viduality is dominating, usually patient has to look after himself to- gether with a decision about the treatment. disclosing ability western patients are very good in disclosing and explaining their problems, which is helpful for the physician. while in india, certain aspects of life, though very important e.g. sex, are still taboos. privacy if european patients tend to respect other patients’ privacy and not embarras them by intervening while indians, when upset, generally value people showing concern. accuracy europeans expect accuracy in everything. these features are seldom seen in indian patients. the mentioned differences still can be observed in most parts of india. but a few westernized islands already exist in india, too, mainly in urban indian centers, where the differences are not as obvious. a home remedies from all over the world – evaluation and education annette kerckhoff naturopathy, charité university hospital, berlin, germany bmc complementary and alternative medicine , (suppl ):a this workshop focuses on the evaluation of traditional folk remedies from all over the world. the top ten ingredients for home remedies will be examined closer; relevant data from food pharmacology and clinical trials will be presented to understand the active principle. re- liable and safe simple interventions are presented and advice for education is given. these evaluated interventions using easy-to-get, worldwide spread and cheap ingredients can support health and self-efficacy. a ayurveda in europe– what’s needed when healing tradition travels abroad? christian s kessler , , andreas michalsen , institute of social medicine, epidemiology and health economics, charité university, berlin, germany; department for complementary medicine, immanuel hospital berlin, berlin, germany correspondence: christian s kessler (c.kessler@immanuel.de) bmc complementary and alternative medicine , (suppl ):a ayurveda is one of the oldest codified traditional systems of medicine worldwide. during the last decades an increasing usage and acceptance of ayurveda in countries outside of its original context, particularly in european countries and north america, has been observed. notably, ayurveda has developed quite het- erogeneously during this journey by interacting with other con- cepts of healing and philosophy. depending on where and by whom it is being practiced and called upon, it has taken different shapes to different degrees depending on a significant number of cultural, political, economic, geographical and other factors. due to this complexity, interdisciplinary ayurveda research and networking is required in all related fields, e.g. medicine, anthro- pology, philosophy, indology, religious sciences and health eco- nomics, in order to further clarify ayurveda’s current statuses in western countries and its health care potentials in countries out- side of south asia. this pre-conference workshop invites ( ) lead- ing scientists in the field to present their research work related to ayurveda as practiced outside of south asia, ( ) senior clini- cians with long standing expertise in treating patients with ayur- vedic medicine in western contexts to share their experience, and ( ) board members of the leading western therapists’ associ- ations for ayurveda (dÄgam,veat, afgim, euaa, eurama, dga and others) to highlight crucial aspects related to national/supra- national health care economics and policy making. this session deserves to be included in the program because ayurveda is one of the fastest growing traditional systems of medicine in western countries, however, it is still lacking acceptance as a whole sys- tem of medicine in conventional mainstream medicine. this ses- sion aims to develop strategies for a long-term inclusion of bmc complementary and alternative medicine , (suppl ): page of evidence-based ayurvedic therapies into reimbursable western health care delivery and health education in countries outside of south asia. interconnected short presentations ( + min.) will be followed by a min. round table discussion to conclude the min. session. a clinical trials on ayurveda in western countries: implications for future projects christian s kessler , (c.kessler@immanuel.de) institute for social medicine, epidemiology and health economics, charité university, berlin, germany; immanuel hospital berlin, department for complementary medicine, berlin, germany bmc complementary and alternative medicine , (suppl ):a clinical research on traditional systems of medicine like ayurveda should not just be doing research on unconventional therapies by using conventional methodology. several issues have to be taken into account in order to facilitate a successful implementation of clin- ical trials that should simultaneously fulfill quality criteria of modern research methodology and internal criteria of complex whole sys- tems approaches like ayurveda. moreover, within international col- laboration projects cultural-, context- and setting-aspects as well as clear research communication between partners have to be taken into account in order to guarantee fruitful research cooperation. ex- periences from clinical trials on ayurveda in germany will be pre- sented, outlining chances, challenges, obstacles and pitfalls. a integrative korean medicine treatment for the management of pregnant women’s health: korean medicine approach eun s. kim , eun h. jang , rana kim , sae b. jan gynecology in korean medicine, you and green korean medical clinic, daejeon, , south korea; acupuncture, you and green korean medical clinic, daejeon, , south korea; obstetrics and gynecology, you and green korean medical clinic, daejeon, , south korea correspondence: eun s. kim (greenmiz@naver.com) bmc complementary and alternative medicine , (suppl ):a during the process of treating diseases and enhancing the health of pregnant women, korean medical treatment increases rate of suc- cess of other medical treatments, at the same time as reducing any complications to help maintain pregnancy and induce term delivery. under the binary medical system, separated as western and korean medicine systems, there are various treatment modules for the im- provement of pregnant women and the management of diseases during pregnancy. in this respect, we suggest korean medical treatment including acu- puncture, moxibustion, hip steam bath, and traditional medicine as an effective adjuvant tool, could help reduce any complication caused by other medical treatments and even help improve health of patients overall. as the title of this year’s conference means, for the comprehensive patient care, introduction of integrative korean medicine treatment would give a safe and effective way to reduce complications and, later improve overall health of patients psycho- logically and physically. on the whole, korean gynecology, based on the theory of traditional korean medicine, encompasses the disciplines of physiology and pathology of pregnant women from conception till delivery. emesis gravidarum or cold is a common complication that occurs during early pregnancy period. it is possible to treat common cold with proper management of symptom such as prevention of pathogenic factors. abortions such as threatened abortion can be prevented with inducing hemostasis and speeding up the absorption of hematoma. there might be preterm labor associated with development of the fetus during the mid-pregnancy because of plummeting bearing cap- acity of uterine lining. this can be improved by increasing blood flow to uttering lining. even in case of placenta previa, increasing blood flow to placenta would prevent abruption of placenta and slow down placenta previa. amniotic fluid is interrelated with nutrition supply to fetus, so oligohydramnios can be partially improved just by increasing blood flow to the fetus. growth of the fetus gives strain on your waist and causes musculoskeletal pain. once the blood flow to the fetus naturally increases, muscles and ligaments supporting musculoskeletal system weaken. consequently, musculoskeletal pain occurs in spite of little movement. this can be improved by applying acupuncture, moxibustion, korean physical therapy. delivery can be completed by the contraction of uterus. in korean medicine, natural delivery does not mean reducing the pain, but shortening the pain interval. thus, maximizing blood flow to uterine lining would shorten pain interval to achieve natural delivery. a ayurveda and salutogenesis martin mittwede (martin.mittwede@ayurveda-akademie.org) director, faculty of ayurvedic medicine, european academy of ayurveda, birstein, germany bmc complementary and alternative medicine , (suppl ):a since more than years ayurveda is based on concepts that were developed from a combination of philosophy and clinical prac- tice. from a modern perspective we have to ask whether ayurveda is more than a philosophy of life or a knowledge system. traditional systems of medicine have a strong focus on health, wellbeing and prevention. ayurveda does not only include medicine and therapy, but is also a teaching of balanced life. on the basis of knowing oneself and know- ing what is really strengthening or weakening in life, right decisions can be made which are the basis of action in everyday life and lead to good habits. in this sense, knowledge of life also includes profound self- knowledge and healthoriented action. inner and outer reality are connected to one another and give an integrated feeling of life (sense of coherence in the sense of salutogenesis) through scientific research, not only the successes of ayurvedic ther- apies can be examined, but also the beneficial effects of a balanced life. it is important that the research approaches reflect the complex nature of the ayurvedic system and the multifactorial genesis of health as well. by comparing ayurveda with concepts of salutogenesis deeper in- sights in traditional medical systems can be reached; and these can inspire new lines of empirical research. a introducing ayurveda in a gp practice wiebke mohme (mohme@gmx.net) ayurveda and naturopathy, general practice, hamburg eimsbüttel, germany bmc complementary and alternative medicine , (suppl ):a a large percentage of patients asking for ayurveda in my gp practice suffer from stress-related and psychosomatic diseases. ayurvedic concepts of lifestyle changes, diet, physical therapies and phytother- apy tailored to the individual state and constitution offer a perspec- tive towards healing. due to limited resources in terms of time, finances and availability of remedies and therapies practical ap- proaches have to be chosen to translate these concepts into practical steps that fit into patients’ everyday life. to talk with the patients and explaining everything in a way they can relate to becomes cru- cible. the inclusion of yoga practice, breathing techniques, relaxation and meditation have proven useful and effective. the focus is on supporting the patient's motivation to change their condition, and exploring the patient's resources, skills and potential. if a condition cannot be changed it is important to foster acceptance of what is. since most of the success of a treatment depends on the patient's cooperation and homework, anything that is offered has to add a sense of joy and satisfaction to their life. bmc complementary and alternative medicine , (suppl ): page of various topics a refugees with chronic diseases between the middle-east and europe: the role of traditional and integrative medicine in bridging gaps eran ben-arye , , massimo bonucci , bashar saad , thomas breitkreuz , , elio rossi , , rejin kebudi , michel daher , samaher razaq , nahla gafer , omar nimri , mohamed hablas , gunver sophia kienle , noah samuels , michael silbermann integrative oncology program, lin medical center, clalit health services, haifa, israel; faculty of medicine, technion-israel institute of technology, haifa, israel; the association for integrative oncologic therapies research (a.r.t.o.i.), rome, italy; al-qasemi academy, baqa el- gharbia, israel; die filderklinik, stuttgart, germany; paracelsus- krankenhaus unterlengenhardt, bad liebenzell, germany; asl tuscany north west, lucca, italy; tuscan network for integrative oncology, florence, italy; cerrahpaşa medical faculty, istanbul university, istanbul, turkey; st. george hospital, balamand university, beirut, lebanon; children’s welfare teaching hospital, baghdad, iraq; radiation & isotope centre, khartoum, sudan; ministry of health, amman, jordan; palliative care services, gharbiya cancer society, al gharbiya, egypt; university of witten/herdecke, freiburg, germany; tal center for integrative oncology, institute of oncology, sheba medical center, ramat gan, israel; middle east cancer consortium, haifa, israel correspondence: eran ben-arye (eranben@netvision.net.il) bmc complementary and alternative medicine , (suppl ):a the recent wave of immigration from the middle-east to europe has intensified the need to find a model for supportive care which is tai- lored to the dominant paradigm of health belief among refugees, with its high affinity for complementary and traditional (ctm) medi- cine. the middle-eastern context of health care contrasts significantly from that of integrative medicine research and clinical practice which is prevalent in europe and other developed nations, where comple- mentary medicine is typically used by patients from the upper socio- economic and educational level of society. the goal of the workshop will be to address the cross-cultural health conflicts experienced by refugees from the middle east who have fled to europe. the work- shop will be comprised of integrative physicians from middle eastern countries invited by the middle-east cancer consortium, as well as leading european figures from the field of integrative medicine. this workshop reflects the commitment of clinicians and researchers from europe and the middle east to bridge cross-cultural gaps experi- enced by refugees and health care providers by the use of an inte- grative bio-psycho-social-spiritual approach. young people in integrative healthcare – workshops y open dialogue with experts - integrative medicine: a conversation with experts lena bandelin, anna-lena lang institute for social medicine, epidemiology and health economics, charité university hospital, berlin, germany bmc complementary and alternative medicine , (suppl ):y this workshop will provide a space for conversation between stu- dents, young doctors, practitioners, and experts in the field of inte- grative medicine. this meeting will be casual in nature, where general questions that represent the diverse perspective may be asked to explore issues related to pursuing a career in integrative medicine. this session is for people who may ponder: what does in- tegrative medicine mean to me? what does a holistic approach to patient care mean? where do i see myself in the medical health sys- tem of the future? how will i get there? what integrative medicine resources are available to me to inform and improve medical prac- tice? hearing perspective from experts in various fields of integrative medicine whose work ranges from research to patient care, inpatient to outpatient practice, and public to private practice will help the at- tendee of this session have a better understanding of how to navi- gate their journey in integrative medicine. possible experts that may serve on this panel include: michalsen (naturopathic medicine), stange (naturopathic medicine), kessler (ayurveda), chris von scheid (mbm), haramati (mindfulness), brinkhaus (tcm), girke (anthropo- sophic medicine) y integrative medicine hands on workshop eva wartner naturopathy, immanuel hospital berlin-wannsee, berlin, germany bmc complementary and alternative medicine , (suppl ):y minutes of integrative medicine/cam practice! discover elements of different im disciplines through hands-on experience. join us for cupping massage, sound therapy, phytotherapy, wet packs, yoga, dietary and mind body medicine. leave with new knowledge and skills that you can immediately incorporate into your practice. y integrative medicine online christoph holtermann pediatrics, filderklinik, filderstadt, germany bmc complementary and alternative medicine , (suppl ):y how does integrative medicine relate to the internet? how do people interested in integrated medicine network and access infor- mation? this workshop will explore these questions using online net- working and information tools like facebook, mailing lists, and wikipedia as case studies. the focus will be on how we are both af- fecting the medium and being shaped by the medium. how can we best utilize these resources to effectively communicate with one an- other? how can we further utilize these tools to address the ques- tions and tasks necessary for integrative medicine’s development and success in the future? y comparing medical student integrative medicine curricula from around the world maxwell binstock university of california, berkeley, ca - , usa bmc complementary and alternative medicine , (suppl ):y this event will explore the various integrative medicine curricula available to undergraduate medical students in different countries. our panel will have medical student representatives from a diverse array of countries. they will share the student experience of integra- tive medicine education, including, but not limited to accessibility, topics, and curriculum design. we will compare and contrast pro- grams from different countries and explore facilitators and barriers to undergraduate medical student learning and practice of integrative medicine. ample time will be left for additional perspectives from other students in the audience as well as questions. the purpose of this session is to give students and educators additional insight, in- spiration, and ideas of how to improve integrative medicine educa- tion for their country's undergraduate medical student. this workshop is meant for students, educators, practitioners, and researchers. y composing the moment robert riebau, edin mujkanovic institute for music scieneces and music pedagogy, university of osnabrück, osnabrück, germany bmc complementary and alternative medicine , (suppl ):y bmc complementary and alternative medicine , (suppl ): page of music may give one access to inspiring experiences of the moment. in our workshop we will explore unconventional techniques to get in touch with our creative energy. it is not about being "right" or "wrong," but rather learning how to have an open mind. we will have fun communicating and improvising through various instru- ments and sound making objects. come on out and play! symposia research x yoga in therapy and prevention: the current state of the science on utilization, efficacy and safety holger cramer , romy lauche , andres michalsen , lesley ward university of duisburg-essen, essen, germany; university of technology sydney, sydney, australia; charité – university medical centre, berlin, germany; oxford university, oxford, uk correspondence: holger cramer (h.cramer@kliniken-essen-mitte.de) bmc complementary and alternative medicine , (suppl ):x as yoga is gaining increased popularity as a therapeutic practice, it has become one of the therapies with the most rapid increase in prevalence. accordingly, yoga’s potential as a preventive or thera- peutic means has been explored in a growing number of clinical tri- als to date. the purpose of this symposium is to present a comprehensive overview on the state of the science on the applica- tion of yoga in therapy and prevention. presenters will review scien- tific research on utilization, efficacy, and safety of yoga for the general population as well as for selected patient samples with spe- cific mental or physical conditions. dr. lauche will present data on the association between yoga and weight control from clinical trials, systematic reviews and current cross-sectional analyses. dr. michal- sen’s presentation will cover the current state of knowledge on yoga for stress reduction and include results of a new study on yoga for stress reduction in schools. dr. ward will present data on yoga for pregnancy, and for neurological conditions; and discuss the content of yoga interventions which have been developed for these condi- tions. dr. cramer’s presentation will cover the current state of know- ledge on the safety of yoga both in clinical care and in everyday use. presenters will also describe highlights of their own ongoing yoga re- search initiatives to further illustrate these concepts and approaches; and recent trends, developments and future directions for this field of research. given its relatively low costs, yoga could easily be implemented worldwide as a preventive or therapeutic means for a variety of im- portant health conditions. as such, health-care providers are increas- ingly presented with patients using, or interested in trying, yoga for the management of their medical conditions. this increased use of yoga raises the issue of the efficacy and safety of yoga as a preven- tion strategy and therapy. the symposium will present up-to-date scientific evidence on the prevalence and patterns of yoga use as well as on the efficacy and safety of yoga for health conditions of global medical and socioeconomic importance. this information will promote evidence-based decision making on the clinical application of preventive or therapeutic yoga interventions. gaps and open question in current research and implications for further studies will also be highlighted. the symposium thus aims to improve both clin- ical decision making and research quality on one of the most preva- lent complementary therapies used for the prevention and therapy of chronic health conditions. x the safety of yoga – a comprehensive review of clinical and epidemiological data holger cramer department of internal and integrative medicine, university of duisburg- essen, essen, , germany bmc complementary and alternative medicine , (suppl ):x while yoga has long been viewed as a cure without harm, this view has been challenged in recent years. mainly based on anecdotal evi- dence, the safety of yoga has been questioned in a number of lay- press articles. these publications seem to have led to a general un- certainty among yoga practitioners and those interested in starting practice. to address this issue from a scientific perspective, the results of a systematic review of case reports on yoga-associated injuries and other adverse events are presented. systematic reviews as well as own studies on epidemiological data will also be reported, assessing data from more than , yoga practitioners. large population- based surveys on associations of yoga practice with falls, injuries, and joint problems will be covered. further, clinical data will be pre- sented in a meta-analysis on all available randomized trials on yoga reporting on safety-related data. in total, trials with more than , participants were analyzed. the available evidence shows that just as any other mental or phys- ical practice, yoga is indeed associated with certain risks of injuries and other adverse events. however, yoga appears just as safe as other forms of exercise. between one in four and one third of yoga practitioners have been injured or suffered another adverse event due to their yoga practice; however most were mild and transient. given that yoga has been shown effective for a number of condi- tions and risk constellations, there no need to discourage yoga prac- tice for healthy people or those with underlying physical or mental ailments. x effects of integrative medicine on purinergic signalling and on the autonomous nervous system - implications for the treatment of anxiety and pain dominik irnich , wolfram stör , geoffrey burnstock , hans-georg schaible , thomas ots department of anesthesiology, multidisciplinary pain centre, university of munich, munich, germany; german medical association for acupuncture (dÄgfa), munich, germany; autonomic neuroscience centre, university college medical school, london, nw pf, united kingdom; institute of physiology, university of jena, jena, germany; private practice, graz, austria correspondence: dominik irnich (dominik.irnich@med.uni- muenchen.de) bmc complementary and alternative medicine , (suppl ):x this session presents the scientific underpinnings of the mind–body connection documenting the numerous interactions of the periph- eral, autonomous and central nervous system. first, this session will provide important background information about how these systems profoundly impact human functioning, and how this can be modu- lated on different levels by techniques like acupuncture, neuralther- apy, meditation, relaxation techniques and movement therapies. second, it will be assessed how this knowledge can be translated into daily practice to achieve long term effects in chronic pain and anxiety disorders. strategies using a patient-centered approach will be presented for group treatment as well as in an individualized setting. speakers will demonstrate that desensitization, somatic awareness, understanding, respect, discipline, empathy and patience are the basic principles of a successful treatment. x integrative gastroenterology jost langhorst (j.langhorst@kliniken-essen-mitte.de) kliniken essen-mitte, university of duisburg-essen, duisburg, germany bmc complementary and alternative medicine , (suppl ):x expertise i have serious experiences regarding conference’ and session’ organ- izing and have chaired and held sessions at several conferences, in bmc complementary and alternative medicine , (suppl ): page of the field of complementary medicine as well as in gastroenterology and internal medicine. i have published numerous articles in the field of gastroenterology, conventional and complementary. integrative gastroenterology can be considered my field of expertise, witnessed by several trials and publications. i am the director of the department for integrative gastroenterology with special focus on patient care and clinical as well as basic research. i am the expert in the field for complementary and alternative medicine (cam) and psychosomatic medicine in inflammatory bowel diseases for the german society of gastroenterology (dgvs). i am capable of organizing this session in an intelligent and forward fashion. the invited speakers demonstrate outstanding experience in high quality research in integrative gastro- enterology on an international level. they have all been attending or organizing conferences in the past and are well recognized and lead- ing experts in the field of integrative gastroenterology. we expect this session to be a success. synospis there is a huge interest of the public in an integrative approach implementing complementary treatment approaches into gastro- enterology; however evidence for the efficacy and safety of comple- mentary therapies is still sparse or of lower quality in various fields leading to dissatisfaction among patients and practitioners. during the past years several trials and reviews have been conducted in- creasing the evidence base for integrative gastroenterology. chinese medicine has a long history in the treatment of digestive disease and with faecal microbiota transfer an old therapy strategy with a long history in medicine is gaining more and more attention at the mo- ment. this is based on the enormous interest in the scientific field of the microbiome where fascinating interactions between the mind and the microbiome have been proposed. the purpose of this symposium is to present recent clinical trials, sys- tematic reviews and basic research on complementary and alterna- tive therapies with the focus on chinese medicine, faecal microbial transfer and the mind-gut axis. the presenters, coming from three different continents, will not only provide the most recent develop- ments in the field of integrative gastroenterology, but also point out blind spots of current research in order to direct future research for the best possible patient care. the presenters will further describe highlights of their own ongoing research initiatives in the field of in- tegrative gastroenterology. the session will consist of three talks. x yoga for weight loss and weight control – a critical review of research findings romy lauche australian research centre in complementary and integrative medicine (arccim), university of technology sydney, ultimo, , australia bmc complementary and alternative medicine , (suppl ):x the rates of overweight and obesity have reached epidemic propor- tions worldwide, with nearly two in three people in germany, australia and the united states classified as overweight or obese. a large percentage of complementary medicine interventions specific- ally target overweight and obesity, and as such it is not surprising that weight loss is one of the most frequently stated reasons for many cm practices including yoga. yoga is in fact regularly adver- tised as the magic remedy for weight management in public yet a lack of quality research has been identified to fully understand the role of yoga in weight management, from public health and clinical perspectives. the aim of this presentation is to evaluate latest research on the as- sociations of yoga with dietary patterns, body weight, body image and eating disorders, and methods to lose or control weight; to summarize findings from clinical trials and systematic reviews; and to discuss directions for future research needed to establish a scientific foundation for the use of yoga in overweight and obesity. x evidence-based assessment of integrated care for pain – how do we best integrate different outcomes, to understand the effects of integrated care? tobias sundberg, torkel falkenberg ic –the integrative care science center, stockholm, sweden correspondence: tobias sundberg (tobias.sundberg@integrativecare.se) bmc complementary and alternative medicine , (suppl ):x brief summary the overall aim of this session is to present and inform inter- national stakeholder perspectives and expert opinions on inte- grating different outcomes in the evaluation of integrated care, i.e. the evidencebased assessment of integrated healthcare inter- ventions for pain. timeline ( minutes) ) a panel of researchers and stakeholders will share their expert perspectives, experiences and opinions about the integration of outcomes in the assessment of integrated pain rehabilitation interventions. ( min) ) the audience is invited to contribute to the discussion sharing their views of integrated outcomes for integrated care via a panel dialogue, possibly complemented by means of small group participatory "think tanks". ( min) ) the session will finish by summarizing the proposed "best" outcomes to be integrated and used in the evaluation of integrated care for pain. ( min) why this session deserves to be in the program the impact of bringing together expert opinions from key stake- holders including research and industry leaders to summarize scien- tific outcomes for evidence-based assessment of integrated pain rehabilitation is anticipated to be of high importance contributing to improved understanding of the use of integrated outcomes in inte- grated care for pain in clinical practice and research. additionally, it is the organizers' intention that this session will contribute with infor- mation and outcomes to inform a subsequent report. importantly, to- gether with data from a literature review, this session may contribute with information to a proposed "toolbox", i.e. a document that can be used by different stakeholders for informing relevant evidence- based assessments of healthcare interventions with a special em- phasis on integrating multiple outcomes in the evaluation of inte- grated care for pain. the audience will ) gain international stakeholder perspectives and expert opinions on the integration of outcomes in the evaluation of integrated care for pain. ) gain knowledge about clinical and research based outcomes for evidence-based assessment of integrated care for pain. ) take home ideas and hypothesis with relevance for clinical practice and future research in the area of integrated care for pain. clinical care x implementation of integrative medicine in a german pediatric hospital setting – clinical realization of complementary and alternative treatment approaches catherina amarell kinderkrankenhaus st. marien, landshut, germany bmc complementary and alternative medicine , (suppl ):x bmc complementary and alternative medicine , (suppl ): page of complementary and alternative medicine (cam) can support and amplify traditional therapies, especially in children. however, they are barely being used in in-patient treatment. the children’s hospital st. marien initialized a responsible use of cam as part of a model project. over the past years, cam methods were integrated into routine pediatric care of the hospital in in-house and outpatient treatments. complementary treatments are not only provided for acute illness like upper airway nfections, headache or abdominal pain but are also offered as a supportive treatment to children with chronic illnesses. the clinical implementation of these treatments was undertaken in close collaboration of all healthcare professionals (nurses, physiother- apists, doctors, etc). different modalities were implemented, using methods of acupres- sure, relaxation techniques, herbal medicine, wraps and poultices and aromatherapy. regular in-house trainings led to broad knowledge and embedding of different techniques in all therapeutic areas. one important pillar of implementation is the education of parents. parents are regularly involved in the implementation process, receiv- ing guidance on how to apply cam and also receiving informational material informing them of possible complementary treatments as well as recommended life style changes for their children. x update on pediatric integrative medicine – three main topics – upper airway infections catherina amarell kinderkrankenhaus st. marien, landshut, germany bmc complementary and alternative medicine , (suppl ):x upper respiratory tract infections (uri) are very common among chil- dren and account for a majority of visits to pediatric clinics. a small child suffers from about - uris per year. they are usually mild, % viral and self-limiting, however the symptoms can cause irritabil- ity, fever and great discomfort- both for the child and the parents. antibiotic treatment is not necessary in uncomplicated uri episodes. over the counter medicines („conventional”and complementary products) are widely used, but many of them are not effective (or: evidenced based) and can even cause a variety of side effects, par- ticularly in very young children. in this part of the symposium an update will be given on integrative approaches of treatment strategies for uris by taking into account not only current evidenced based treatments to shorten the duration and reduce symptoms, but also taking a closer look at home remed- ies, dietary changes, supplements and lifestyle changes. x update on pediatric integrative medicine – three main topics - chronic headaches melanie anheyer elisabeth krankenhaus essen, essen, germany bmc complementary and alternative medicine , (suppl ):x headaches are one of the most common pain conditions in children. the worldwide prevalence is estimated about . %, with an increas- ing incidence during the last years. the classification of headache for children and adolescents as well as for adults is defined by the inter- national headache society and published in the international classifi- cation of headache disorders iii (ichd- ). the most common headache types in childhood are migraine and tension-type head- aches. both types are generally associated with a reduction of overall quality of live and a high frequency of school absence. this part of the session will give an overview of the current evidence for integrative treatment options of primary chronic headaches in children and adolescents. on this occasion especially mind body therapies, acupuncture, herbal medicine and nutritional supplements will be taken into account. x implementation of integrative medicine in a german pediatric hospital setting– development of a concept and steps towards realization marion eckert (dr-eckert@t-online.de) kinderkrankenhaus st. marien, landshut, germany bmc complementary and alternative medicine , (suppl ):x complementary and alternative medicine (cam) has not been sys- tematically institutionalized in the pediatric care so far. therefore it is often used without the knowledge of the attending pediatrician and compartmentalized mostly into the outpatient care. for the responsible implementation and systematic evaluation of complementary medicine in pediatric care a model project “integra- tive pediatrics – implementation of naturopathic and complementary medicine in pediatrics” was initialized in different pediatric hospi- tals in germany, one of them being the “kinderkrankenhaus st. mar- ien” landshut. within this project we started to implement cam methods in the pediatric routine care of the hospital and the out- patient setting. a concept of the implementation process has been developed based on clinical care, teaching and scientific evaluation. the concept and the main steps which lead to successful implemen- tation will be presented and individual speakers will introduce the audience into selected treatment modalities implemented and scien- tifically evaluated over the period of one year. x update on pediatric integrative medicine - three main topics - functional abdominal pain marion eckert , mercedes ogal kinderkrankenhaus st. marien, landshut, germany; arztpraxis für kinder und jugendliche, brunnen, switzerland correspondence: marion eckert (dr-eckert@t-online.de) bmc complementary and alternative medicine , (suppl ):x abdominal pain is a common complaint of many children. according to the kiggs study up to % of all - to -year old children and about % of all children age - -years complain about abdominal pain over the period of months. the entity of functional abdominal pain is considerd to make for about % percent of abdominal pain episodes in children. it is characterized and defined as rome iii cri- teria and many times difficult to diagnose and treat. many children undergo numerous diagnostic tests and sometimes painful procedures before the diagnosis functional abdominal pain is made. the rome iii criteria were developed to avoid unnecessary diagnostic tests and help facilitate the diagnosis. it still is challenging to treat and give the children strategies to deal with their pain. in this part of the symposium we will focus on giving an update on the current evidenced based treatment strategies in „conventional medicine“ and also focus on evidenced based integrative approaches for functionel abdominal pain in different treatment settings. x implementation of integrative medicine in a german pediatric hospital setting – concept and realization using the example of the kinderkrankenhaus st. marien, landshut marion eckert , catherina amarell , annette schönauer , birgit reisenberger , bernhard brand , dennis anheyer , gustav dobos kinderkrankenhaus st. marien, landshut, germany; klinik für naturheilkunde und integrative medizin, knappschafts-krankenhaus, kliniken essen-mitte, essen, germany correspondence: marion eckert (dr-eckert@t-online.de) bmc complementary and alternative medicine , (suppl ):x complementary and alternative medicine (cam) has not been sys- tematically institutionalized in the pediatric care so far. therefore it is often used without the knowledge of the attending pediatrician. the bmc complementary and alternative medicine , (suppl ): page of growing interest amongst users as well as therapists leads to an in- creasing need of information about safety and efficacy for the cam methods used. for the responsible implementation and systematic evaluation of complementary medicine in pediatric care a model project integra- tive pediatrics – implementation of naturopathic and complementary medicine in pediatrics was initialized in different pediatric hospitals in germany, one of them being the kinderkrankenhaus st. marien landshut. within this project we started to implement cam methods in the pediatric routine care of the hospital and the outpatient set- ting. a concept of the implementation process has been developed based on clinical care, teaching and scientific evaluation. the main steps which lead to successful implementation will be presented and individual speakers will introduce the audience into selected treat- ment modalities implemented over the period of one year. the mo- dalities presented will be methods of tcm, relaxation techniques, foot reflexology, wraps and poultices, aromatherapy and homeop- athy. other modalities implemented are yoga and herbal medicine. to evaluate the implementation process a survey of expectations, knowledge and usage of cam among patients and the medical staff was performed at the onset of this project. also qualitative and quantitative data of this survey will be presented to the audience. x the anthroposophic-medical approach to the treatment of insomnia, other stress-related complaints and adhd matthias kroez , david martin , harald matthes , aldo ammendola interdisciplinary oncology, hospital havelhöhe, berlin, germany; pediatrics, university of tübingen, tübingen, germany; hospital havelhöhe, berlin, germany; weleda ag, arlesheim/ch, arlesheim, switzerland bmc complementary and alternative medicine , (suppl ):x anthroposophic medicine (am) is an integrative multimodal treat- ment system based on a holistic understanding of disease and treat- ment. it is building on a concept of four levels of formative forces in nature and on the model of a three-fold human constitution. am is practiced by conventionally-trained physicians, therapists and nurses who have undergone additional, specialized training, learning to apply a broad array of effective natural medicines. this whole-person approach also incorporates art, music, movement (eurythmy), and massage therapies as elements of a multidisciplinary health care. more than forty percent of all adults suffer adverse health effects from perceived stress, e.g. insomnia; about seventy-five percent of all doctor's office visits are for stress-related complaints. stress playing also a role in problems such as headaches, high blood pressure, dia- betes, asthma, arthritis, depression and anxiety is mainly a hazard of the workplace which costs the industries worldwide several hundreds of billions euro annually. attention deficit hyperactivity disorder (adhd) is a mental disorder characterized by problems paying attention, excessive activity, or dis- ruptive behavior. despite being the most commonly studied mental disorder in children, the exact cause is unknown in the majority of cases. adhd treatment varies by country and usually involves some combination of counseling or behavioral therapy, lifestyle changes, and medications. the anthroposophic-medical approach to stress-related complaints, exemplified in this symposium by insomnia and other diseases, in- clude counseling with regard to behavioral changes (daytime and sleep hygiene adapting to an individual circadian rhythm, inner spir- itual sleep preparation e.g. with a review of the day, meditation or prayer), external applications (lower leg and foot embrocation) e.g. with lavender oil or cuprum ointment, and anthroposophic medica- tions such as bryophyllum pinnatum, potentized phosphorus, avena sativa combinations, or possibly also medications such as neuro- doron® or cardiodoron® from weleda ag. similar approaches to the management of adhd will also be presented and discussed. x advancing the science and care of integrative oncology around the world jun j mao , claudia witt , yufei yang , gustav dobos integrative medicine service, memorial sloan kettering cancer center, new york, usa; institute for complementary and integrative medicine, university hospital zurich, zurich, switzerland; clinical cancer center in xiyuan hospital, china academy of chinese medical sciences, beijing, china; complementary and integrative medicine, clinic for internal and integrative medicine, university of duisburg-essen, essen, germany correspondence: jun j mao bmc complementary and alternative medicine , (suppl ):x advances have been made in research to develop evidence and im- prove clinical delivery of integrative onoclogy care. in this inter- national symposium, the speakers will discuss the current status of clinical care delivery in north america, europe, and asia. in addition, this international group of physician scientists will discuss their own research in the areas of acupuncture, mind-body medicine, and herbal medicine for cancer care. following their talks, they will en- gage the audience to discuss how to increase collaboration to ad- vance the science and care of integrative oncology around the world. x from communication to integration – consultations about complementary medicine in cancer care miriam oritz , markus horneber , petra voiß institute for social medicine, epidemiology and healthe economics, charité university, berlin, germany; oncology, klinikum nürnberg, nürnberg, germany; naturopathy and integrative medicine, university of duisburg-essen, essen, germany correspondence: miriam oritz (miriam.oritz@charite.de) bmc complementary and alternative medicine , (suppl ):x this session will give an overview about how to effectively communi- cate with patients (and relatives) about complementary medicine in routine oncological care. four talks will be provided on: � needs and expectations: a patient’s perspective � tasks and topics for the health professionals: case presentations � consultation service: results of a collaborative research project � implementation strategies: international perspective on consultation models after the session the audience will � be able to understandthe oncological patients`perspective � know about special communication skills in integrative oncology � know about models for implementing integrative oncology in practice x implementation of integrative medicine in a german pediatric hospital setting– integration of foot reflexology as one pillar of an integrative treatment approach for hospitalized children birgit reisenberger kinderkrankenhaus st. marien, landshut, germany bmc complementary and alternative medicine , (suppl ):x direct involvement of parents in the treatment of their sick child is very important for the wellbeing of the child, the parents, as well as bmc complementary and alternative medicine , (suppl ): page of for the staff involved in treating the child. foot reflexology is a great means to accomplish this goal and an effective way to provide fast alleviation of symptoms in many cases. out of the many indications for the application of foot reflexology we chose two common ail- ments in children for which we offer this additional treatment modal- ity: abdominal pain and lung affections such as bronchitis. the parents are given teachings by physiotherapists and nurses apply certain techniques whilst caring for the children. additionally handouts explaining the technique are provided. the aim is to offer parents and caretakers of the children a practical and easy way to al- leviate symptoms and activate self-regulating mechanisms in their children in the hospital and at home. for scientific evaluation a study was initiated to investigate the ef- fects of the treatment. questionnaires were developped to be filled in by the parents before and weeks after the initiation of the inter- vention. certain aspects of the parent’s stress level resulting from their child’s illness, as well as practicability, comprehension and ef- fectivity of the techniques used are assessed. so far there has been a very positive feedback and openness to the study and foot reflexology. it is perceived as an efficient help for the children and also as an emotional relief for the parents by lowering their own stress levels. x up-date on integrative pediatrics alexandra von rosenstiel , marion eckert , mercedes ogal , catharina amarell , melanie anheyer pediatrics, rijnstate hospital, arnhem, the netherlands; pediatrics, kinderkrankenhaus st. marien, landshut, germany; integrative pediatrics, medical office, brunnen, switzerland; pediatrics, elisabeth krankenhaus, essen, germany correspondence: alexandra von rosenstiel (ivonrosenstiel@rijnstate.nl) bmc complementary and alternative medicine , (suppl ):x the aim of this minute symposium is to equip individual clinicians and multidisciplinary teams with up-to-date knowledge of an integra- tive approach to manage common problems in pediatrics. for three pediatric key domains ( ) chronic headache ( ) functional abdominal pain and ( ) upper airway infections the latest scientific research and clinical expertise on integrative therapies in various age groups will be discussed by pioneers from european countries. culture-sensitive concepts and frameworks relevant for informed, shared decision making with families will be provided. this session also highlights successful strategies for incorporating in- tegrative pediatrics into conventional medicine set ups across europe. x integrative oncology in anthroposophic medicine - concept, research and clinical practice friedemann schad , *, marc schläppi , matthias kröz , , , arndt büssing , gil bar-sela , harald matthes , community hospital havelhöhe, berlin, germany; center of integrative medicine, hospital st. gallen, st. gallen, switzerland; research institute havelhöhe, berlin, germany; institut for social medicine, epidemiology and health economics, charité university medicine, berlin, germany; institute for integrative medicine, faculty of health, witten/herdecke university, , herdecke, germany; rambam health care campus, the ruth and bruce rappaport faculty of medicine, technology institute of israel, haifa, israel correspondence: friedemann schad bmc complementary and alternative medicine , (suppl ):x background for decades anthroposophic medicine (am) has provided integrative concepts in cancer care. in hospitals as well as ambulant settings multimodal integrative oncology (io) treatment options have been developed combining high quality provision of conventional cancer treatment with art therapies, movement therapies, eurythmy therapy and mind body interventions. in addition, therapeutic nursing inter- ventions, rhythmical massage, psycho-oncology and mistletoe treat- ment complement daily care. based on guideline orientated medicine, central aspects are the individualized approach, the rela- tionship between professionals and patients, health related quality of life and patient orientation. further development of academic struc- tures and research and exchange with other integrative concepts are future challenges. the world congress of integrative medicine and health (wcimh) in berlin, germany provides the necessary plat- form to address these aspects of io. methods individual aspects, concepts and clinical practice of io in anthropo- sophic healthcare will be subsequently deepened in a first wcimh discussion panel consisting of physicians from european healthcare institutions which have successfully implemented and exercised io concepts. results the panel provides recent data from various fields of io and am: clinical outcome of advanced and metastatic pancreatic cancer treated with standard and io concepts in a certified cancer cen- ter, multimodal treatment concepts and perspectives of chronic fatigue in breast cancer patients, and spiritual needs of onco- logical patients. furthermore, research and clinical approaches of io through the example of swiss, israeli and german hospitals and the implementation in am concepts will be introduced and discussed. conclusion addressing academization and implementation of io concepts in anthroposophic healthcare a discussion panel of the wcimh world congress was set up to deepen and discuss results of actual studies, individual approaches, concepts and clinical practice in this field. x an integrative approach to understanding & managing procedural anxiety - a perspective elad schiff , , eran ben-arye , , zahi arnon , david avshalomov , samuel attias , internal medicine, bnai zion medical centre, haifa, israel; complementary medicine service, bnai zion medical centre, haifa, israel; integrative oncology program and western galilee oncology service, lin medical center, clalit health services, haifa, israel; rappaport faculty of medicine, technion-israel institute of technology, haifa, israel; psychology & mind-body therapies, complementary medicine servive, bnai zion medical centre, haifa, israel; chinese medicine, bnai zion medical center, haifa, israel; school of public health, university of haifa, haifa, israel correspondence: elad schiff (elad.schiff@b-zion.org.il) bmc complementary and alternative medicine , (suppl ):x pre-operative anxiety (poa) is associated with a negative patient ex- perience, increased morbidity, and even mortality. conventional management of poa is suboptimal and relies on anxiolytics. comple- mentary and integrative medicine (cim) therapies have been shown to reduce poa. in the session, we will present: ) patient’s and health care providers’ perceptions of poa and its impact on patient-provider communication. we will contem- plate at anxiety within the broader bio-psycho-social-spiritual context of the patient’s health belief model. ) we will also present a variety of cim therapeutic perspectives on poa: traditional chinese medicine (the "shen" concept), reflexology ( elements theory), hypnotherapy (fear of death, and nocebo effects). a hands-on experience will be given for each modality, so that participants will be able to apply simple techniques for relieving anxiety. ) in addition, we will present findings from state-of-the-art re- search on cim for poa related to obstetric, general surgery/ anesthesia, and gastroenterology procedures. bmc complementary and alternative medicine , (suppl ): page of ) finally we will share our experience with thousands of patients at bnai zion medical center in preventing & treating poa. ) q&a session will be interactive with audience mainly during the segment on therapeutic approaches. x implementation of integrative medicine in a german pediatric hospital setting – homeopathy as one pillar of an integrative treatment approach for hospitalized children annette schönauer kinderkrankenhaus st. marien, landshut, germany bmc complementary and alternative medicine , (suppl ):x over the course of many years, there has been an increasing interest in the homeopathic treatment of children suffering from various ail- ments. not only cough and the common cold, but also acute dis- eases such as pneumonia or severe chronic illnesses like rheumatism, asthma, etc. have been targets for a homeopathic supportive therapy. for more than years we have been offering a consult service for the homeopathic complementary treatment for various different dis- eases in the „kinderkrankenhaus st. marien, landshut“ with great success. the patients are treated with classical allopathic and evi- dence based treatment modalities and additionally a consult service conducted by a highly experienced homoepathic doctor is offered hours a day. inhouse teachings are given on a regular basis to the staff and treatment policies are provided on the intranet of the hospital. patients and families as well as the medical staff highly welcome this additional possibility of treatment for the children. in a study per- formed in , % oft he parents who have been offered the add- itional homeopathic treatment for their child accepted this option readily. for the staff a more comprehensive treatment of the whole child is made possible this way. an overview over the concept for the homepathic care, financing strategies and benefits for the treatment of hospitalized children will be given during this session. education x challenges, outcomes and lessons learned from implementing a mind-body,edicine program into the health professions curriculum aviad haramati , claudia witt , benno brinkhaus , sian cotton , miek jong , mats jong school of medicine, georgetown university, washington, dc, united states; institute for complementary and integrative medicine, university and university hospital zurich, zurich, switzerland; institute for social medicine, epidemiology and health economics, charité - university, berlin, , germany; centre for integrative health and wellness, uc college of medicine, cincinnati, oh , usa; louis bolk institute, driebergen, la, netherlands; department of nursing, mid sweden university, sundsvall, sweden correspondence: aviad haramati (haramati@georgetown.edu) bmc complementary and alternative medicine , (suppl ):x reports from many countries suggest that burnout among physicians and other health professionals is a pervasive problem and a cause for concern. more than half of all physicians in practice in the us, and residents in training in canada, experience burnout, and this can lead to changes in the patient-provider relationship and can ad- versely impact on the quality of care. some believe that this process begins with the decline in empathy and rise in cynicism seen during medical school and post-graduate training. in response, there is in- creased interest among faculty, adminstrators and policy makers to develop interventions with medical students, residents and faculty and provide them with tools to address the rise in chronic stress and burnout and the decline in resiliency. keys to this work are themes of self-awareness and mindfulness and exploring domains of self- care and finding meaning in one’s work. at georgetown university school of medicine, a mind-body medicine skills course was devel- oped to provide opportunities for students, residents and faculty to experience various mind-body techniques in a safe, confidential group setting. the program has now been adapted by a number of other institutions in the us and europe. in this -minute session, representatives from institutions (germany, netherlands, sweden, switzerland and the us) who have implemented mind-body programs will share perspectives on the challenges they faced, the strategies they used to implement the program into the curriculum, the outcomes they obtained, and the lessons learned. the symposium will involve short ( ) minute pre- sentations, which will enable at least a minute discussion with the audience participants. by the end of the session, participants will be able to: . describe of the challenges and barriers to implementation of a mind-body medicine program into the curriculum . understand the strategies that facilitated the successful curricular implementation of mind body medicine programs . delineate some of the outcomes that programs have reported in their students and faculty x promoting development in one self and others: educating for self- care and leadership in integrative health care christian scheffer , aviad haramati , diethard tauschel , , friedrich edelhäuser , integrated curriculum for anthroposophic medicine, university of witten/herdecke, witten herdecke, germany; school of medicine, georgetown university, washington, dc, united states; faculty of health, university of witten/herdecke, witten, germany correspondence: christian scheffer (christian.scheffer@posteo.de) bmc complementary and alternative medicine , (suppl ):x integrative medicine and health care focuses on individual prefer- ences, needs and values of patients. fast changing health care sys- tems with progressive economization, with a digital-technologic transformation and with global interdependencies ask for increased capabilities of health care professionals, especially leadership and self care. based on educational research and educational experiences at georgetown university in the us and at witten/herdecke university in germany we will present contemporary learner centered educa- tional tools to meet these challenges. adi haramati will introduce the symposium by outlining the princi- ples of mindful leadership and then describing how the mind-body- medicine program at georgetown university school of medicine has been effective to foster self-care, self awareness, and professional identity formation among faculty. diethard tauschel will present successful tools of self-directed learn- ing to promote leadership in self-development. friedrich edelhäuser will address the topic: becoming a change agent: fostering student engagement and transformational learning. christian scheffer will give the final presentation on the topic: „responsibility drives learn- ing - leadership and self-care during active participation in patient care. the latter three presenters will describe essentials of their edu- cational experiences with the integrated curriculum for anthropo- sphice medicine at witten herdecke university. this minute session will include short ( minute) presentations followed by minutes of audience participation and discussion, participants will be able to: . understand the basis for self-awareness and self-care as key el- ements that form the basis of mindful leadership and also of learner-centered education . distinguish among various approaches that foster self- awareness . describe different educational methods to foster leadership in integrative medical education. bmc complementary and alternative medicine , (suppl ): page of traditional healing systems x wet cupping: evidence, guidelines and policy abdullah albedah , myeong soo lee , mohamed khalil national centre for complementary and alternative medicine, moh, riyadh, saudi arabia; korean institute of oriental medicine, daejeon, korea correspondence: abdullah albedah (aalbedah @yahoo.com) bmc complementary and alternative medicine , (suppl ):x wet cupping is a leading traditional therapy in asia and middle east as a part of traditional healing systems or as a complementary ther- apy. the session will give an overview of taking wet cupping therapy beyond research stages and discuss the experience of developing guidelines and policy in complementary and integrative medicine. during the session, dr albedah will highlight the saudi governmental experience in regulating and integrating wet-cupping in the conven- tional health care. dr lee will give a talk on cupping therapy in ko- rean medicine clinical practice guideline, then dr khalil will present a model for evaluating wet cupping evidence and the reality of policy makings. objectives – policy and regulation of wet cupping in saudi arabia, obstacles and opportunities – developing clinical guidelines in korea – the scientific evidence and reality of policy making: model of using wet cupping in low back pain x kampo medicine (traditional japanese medicine) for cancer care under integrated universal health care coverage in japan keiko ogawa , yoshiharu motoo , junsuke arimitsu , masao ogawa , genki shimizu kanazawa university hospital, kanazawa, japan; clinical immunology, osaka university, suita, osaka, japan; departement of east asian traditional medicine, ehime prefectural central hospital, matsuyama, japan correspondence: keiko ogawa (ikkandoo@gmail.com) bmc complementary and alternative medicine , (suppl ):x the effectiveness of traditional japanese herbal (kampo) medicine in cancer care is attracting more and more attention in medical system in japan. kampo is the most frequently used alternative and complementary medicine in japan. the aim of kampo therapy is to improve patients condition whatever their diseases are. kampo therapy is unique be- cause its focus is patients condition not their disease. therefore, kampo medicine plays more and more important roles in closing the gap between modern modern medicine and demand of patients. it can be also used easily for cancer patient because it is operated under integrated universal health care by japanese government. pa- tients are diagnosed from both viewpoints of modern and kampo medicine, and they are treated with the appropriate combination of both therapies. this characteristic suggests an ideal form of inte- grated medicine, where scientific and analytical approach of western medicine is integrated with holistic approach of kampo medicine. though its origin was in ancient china, kampo medicine has been developed under the influence of japanese nature and cul- ture, and nowadays is working as an independent medical system significantly different from traditional chinese medicine (tcm). we would like to discuss on the advantage and disadvantage of kampo medicine for cancer patients through some clinical re- searches and reports. according to four key objectives of who strategy, policy to integrate tm within national health care systems, establishment of the safety, efficacy and quality of tm, and preservation of the right of patients to access tm. japanese medical system might be a good example for countries where traditional medicines are used. . provide some information on kampo medicine through some clinical researches and case reports. . discuss on the efficacy of kampo medicine, japanese medical system, and usage of kampo medicine in cancer care. x phytotherapy in therapy and prevention: current state of science and regulation and perspectives of future uses rainer stange , , karin kraft , kenny kuchta immanuel krankenhaus, berlin, germany; charité university medical centre, berlin, germany; university of rostock, rostock, germany; national institute of health sciences, tokyo, japan correspondence: rainer stange (r.stange@immanuel.de) bmc complementary and alternative medicine , (suppl ):x phytotherapy has been the basis of almost any traditional medicine for ages. appr. after and beginning in europe, there has been increasing use of botanical, pharmaceutical and later pharmaco- logical scientific efforts to guarantee delivery of phytotherapeutical products of highest quality and to evaluate their use in therapy as well as to a smaller part also in preventive medicine for a variety of medical conditions. today, phytotherapy is well regulated in coun- tries with western standards of drug regulation. we overlook a num- ber of clinical trials of any type as well as reviews and systematic reviews. traditional use of phytotherapy esp. as teas or decocts, still is around. the purpose of this symposium is to present different dimensions on the state of the science on the application of phytotherapy in ther- apy and prevention. presenters will review scientific research on utilization, efficacy, and safety of phytotherapy for the general popu- lation as well as for selected patient samples with specific mental or physical conditions. one example will be the current state of know- ledge on the use of phytotherapy for therapy and prevention of in- fectious diseases, esp. urinary tract in and airways infections. kampo medicine in japan is a very good case to study its implemen- tation into the japanese public health system. presently, freeze-dried granules of traditional prescriptions are covered by public health insurance in japan. one of these is yokukansan, a novel phytothera- peutic preparation for the treatment of neuronal disorders on the basis of traditional japanese kampo medicine. given its relatively low costs, phytotherapy could easily be imple- mented worldwide as a preventive or therapeutic means for a variety of important health conditions. as such, health-care providers are in- creasingly presented with patients using, or interested in trying, phy- totherapy for the management of their medical conditions. this increased use of phytotherapy raises the issue of the efficacy and safety of phytotherapy as a prevention strategy and therapy. gaps and open question in current research and implications for fur- ther studies will also be highlighted. the symposium thus aims to im- prove both clinical decision making and research quality on one of the most prevalent complementary therapies used for the prevention and therapy of chronic health conditions. given its relatively low costs and so far good safety records, phy- totherapy should be implemented on a wider sale, as is also sug- gested by who with its quest for broader acceptance and understanding of traditional medicines. x globalization of traditional healing systems kenji watanabe (watanabekenji@keio.jp) keio university, tokyo, japan bmc complementary and alternative medicine , (suppl ):x international classification of diseases (icd) is an international plat- form for health statistics of mortality and morbidity since . in , icd- will be launched and traditional healing system will be incorporated at the first time in the long history of icd. first trad- itional healing system features the asian traditional medicine origin- ating from ancitne china. other modalities such as ayurveda or bmc complementary and alternative medicine , (suppl ): page of unani are expected to follow in future. this session will spotlight the meaning of the globalization of traditional healing system. medicine and arts x therapeutic recitation in anthroposophic therapeutic speech: physiological and psychological interactions of respiration, pulse and well-being d bonin gtm, anthroposophic therapeutic speech, bern, switzerland bmc complementary and alternative medicine , (suppl ):x objectives in two studies we investigated cardiorespiratory synchronization in healthy subjects during (simultaneous effects) and after (immediate effects) recitation of ancient verse (hexameter, h/alitteration a), con- trolled and spontaneous breathing (c and s) as well as random con- versation (r). cardiorespiratory synchronization was analyzed with respect to the oscillations in heart rate induced by respiration, i.e. re- spiratory sinus arrhythmia (rsa) and a respiratory trace. ancient verse (e.g. hexameter) is used frequently in anthroposophic speech ther- apy ats, and effects of stress reduction and improved breathing have been attributed to its therapeutic application. methods simultaneous effects study healthy subjects were included in the study. each subject had to perform three different exercises in the following sequence: min. sitting - min. walking and exercise - min. sitting. the exercises were: hexameter exercise (h), controlled breathing (c), spontaneous breathing (s). immediate effects study healthy subjects were included in the study. each subject had to perform three different exercises in the following sequence: min. sitting (s ) - min. walking and exercise - min. sitting (s ). to ensure comparable levels of physical activity during the exercises, the subjects walked at a pace of steps/min. the exercises per- formed were: hexameter exercise (h), alitterative verse (a), random conversation (r). the participants were asked to comment on mood- changes in free text. results simultaneous efffects study [ ] in total recordings were analysed. all exercises showed an in- crease in heart rate, whereas heart rate always decreased after exer- cise as compared to baseline. the hexameter exercise showed the highest heart rate (mean . /min.). cardiorespiratory synchronisa- tion was high after hexameter recitation (γ = . ), less after con- trolled breathing (γ = . ) and desynchronized after spontaneous breathing (γ = . ). immediate effects study [ ] in total recordings were analyzed. the overall binary pattern predominance (pp) as well as the frequency of predominant and cyclically recurrent cardiorespiratory phase locking patterns were calculated. furthermore the changes of low and high frequency heart rate variability. ats provoked alterations in heart rate dy- namics which were different from those after control exercises and which persisted at least during minutes following exercise. references . cysarz d, et al. oscillations of heart rate and respiration synchronize during poetry recitation. am j physiol heart circ physiol. ; :h - h . bettermann h, et al. effects of speech therapy with poetry on heart rate and cardiorespiratory coordination. international journal of cardiology. ; / : - x eurythmy therapy – effects observed in clinical studies arndt büssing witten/herdecke university, witten/herdecke, germany bmc complementary and alternative medicine , (suppl ):x eurythmy therapy (eyt) is a non-pharmacological mindfulness- oriented movement therapy of anthroposophic medicine. it focuses on the relationship and regulation of spirit and soul with the physical body and life forces. eyt expresses sound and rhythm which are transformed in specific movements. it is used for several quite het- erogeneous indications, which underlines the importance to examine more closely its effectiveness. so far there are two systematic reviews on eyt effects in clinical set- tings. the review from büssing et al., published in bmc comple- mentary and alternative medicine, referred to citations which met the inclusion criteria and indicated that eyt is a “potentially relevant add-on in a therapeutical concept”. in lötzke et al. published an updated systematic review in the journal of integrative medicine and referred to studies published since . most of these stud- ies described positives treatment effects with effect sizes ranging from small to large. the studies were heterogeneous according to the indications, study design, methodological quality, and outcome measures. a recent randomized clinical study by büssing, michalsen, krötz et al., which was not included in the review, compared the efficacy of three active interventions, i.e., eyt, yoga and physiotherapeutic exer- cises (phye) in a group persons suffering from chronic low back pain. the study had an eight week intervention and an eight week follow-up phase. all three interventions were similar effective to sig- nificantly decrease patients’ physical disability and pain perception, while sf- ’s mental health component increased. here, eyt had a significant benefit compared to phye. moreover, there were signifi- cant improvements of stress perception, life satisfaction and mood for yoga and eyt, which were not seen for patients receiving phye. significant improvements of patients’ self-efficacy expectation were observed within the active intervention period only in the eyt group. thus, with respect to the different ‘levels’ of the human being, all three interventions were effective on the physiological level (pain and associated disability), yoga and eyt on the emotional level (psy- chological quality of life components), and eyt on the level of the ‘inner self’ (self-efficacy). this larger study showed that eyt can be a therapeutic option for patients with chronic low back pain compar- able to the ‘gold standard‘ phye - and similarly effective as yoga which is already implemented in the us guidelines. in summary, eyt is an important and promising intervention already established in anthroposophic medicine, and worth of further re- search in conventional settings. x arts therapies within anthroposophic medicine – one essential modul of holisitic medical approach harald gruber (harald.gruber@alanus.edu) alanus university of arts and social sciences, alfter, germany bmc complementary and alternative medicine , (suppl ):x anthroposophic medicine is based on science and includes the whole range of conventional therapies. it furthermore aims to strengthen the whole constitution of the patient by taking into ac- count the vital, emotional, mental, spiritual and social dimension as seriously as the physical one. arts therapies as sculpture-, painting-, music-, speech-, and eurythmie therapy are well established and ap- preciated in anthroposophic medicine since decades. they can dir- ectly influence emotions and psychophysiological parameters one the one side and can help nonverbal selfexpression and self- bmc complementary and alternative medicine , (suppl ): page of realisation on the other side. within anthroposophic medicine arts therapies are therefore more than only a “nice to have”. the dif- ferent applied arts therapies are based on traditional approaches and modified by anthroposophically enhanced perspectives. re- search results from speech therapy, music therapy, and eurythmie therapy give evidence for the effectiveness of these special thera- peutic approaches in anthroposophic medicine. basic research studies and randomised controlled trials are accumulating, docu- menting the effectiveness of arts therapies for various patient groups. more comprehensive research is necessary but the first findings are promising. x research in arts therapies sabine koch , harald gruber , urs pohlmann , christine caldwell , barbara krantz , ria kortum , lily martin research institute for creative arts therapy, alanus university alfter/ bonn, alfter/bonn, germany; naropa university, boulder, co; hoogeschool nijmegen, nijmegen, netherlands correspondence: sabine koch (sabine.koch@alanus.edu) bmc complementary and alternative medicine , (suppl ):x art therapy, music therapy, dance movement therapy, drama ther- apy and poetry therapy together form the field of creative arts ther- apies (cats) and are mainly applied in mental health contexts. recently they have also expanded into work and research on neuro- logical and cardiovascular diseases as well as prevention, where they have been found to significantly reduce stress and to enhance the parent-infant relationship. in palliative care, art, music and dance movement therapy have been shown to reduce pain, anxiety and de- pression for cancer patients; for patients suffering from parkinson’s disease they have been shown to increase quality of life. yet in many areas, research needs to be expanded, enhanced and deepened as to what specifically works in arts therapies. how can we investigate active factors and mechanisms? how can we apply psychophysio- logical measures for the benefit of the field? this symposium pro- vides an overview of existing empirical evidence, research findings, and directions in creative arts therapies. ( presentations; minutes) . arts therapies: dr. christine caldwell, naropa university, boulder, co, usa: measuring synchronization of physiological parameters in arts therapies – ideas and first results . art therapy: dr. ria kortum & prof. dr. harald gruber, alanus university, germany; effects and active factors in art therapy: an overview for the field of palliative care . music therapy: barbara krantz, m.a., nijmegen: parent-infant music therapy: effects, efficacy and practice - a research overview . dance movement therapy: prof. dr. sabine c. koch/lily martin, alanus university/srh university, heidelberg: dance movement therapy research: efficacy of dmt and therapeutic factors across the arts therapies workshops research w the cochrane risk of bias tool - how to use the updated tool for assessing clinical trial evidence lisa s wieland , ben kligler , susan gould-fogerite , center for integrative medicine, university of maryland school of medicine, baltimore, md, usa; department of family and community medicine, icahn school of medicine at mount sinai, brooklyn, new york, ny, united states; icam, rutgers school of health professions, newark, new jersey, usa; clinical laboratory sciences and primary care, rutgers school of health professions, newark, new jersey, usa correspondence: lisa s wieland (lswieland@gmail.com) bmc complementary and alternative medicine , (suppl ):w cochrane systematic reviews are considered the gold standard for evaluating the clinical trials evidence for a given therapeutic ap- proach. however many clinicians still find cochrane reviews intimi- dating and difficult to translate into the setting of clinical decision- making. one reason for this gap is a lack of clear understanding among health care providers of the specific methodology and tools that cochrane reviews rely on to arrive at their conclusions. in par- ticular, the cochrane tool for assessing risk of bias—which forms the core of the cochrane strategy for assessing the methodological qual- ity of clinical trials included in a review, and contributes to the over- all assessment of the quality of the evidence stemming from the review —is not well understood by most clinicians, educators and even researchers. the cochrane risk of bias tool has been updated by cochrane methodologists and will be presented to the cochrane community in late . this workshop provides an opportunity to bring the latest methodological advances in this area to integrative medicine clinicians, educators, and researchers. this hands-on workshop will provide an overview of the risk of bias tool, followed by a supervised practice session in which participants will work through the process of evaluating an article using the tool. this first-hand experience in utilizing the risk of bias tool will equip participants to feel more confident in understanding and using cochrane reviews, and demonstrate how they themselves could par- ticipate as a cochrane reviewer if they are interested. the workshop will consist of two parts: ) presentation we will introduce the participants to the cochrane review process and how the risk of bias tool is used in cochrane reviews. we will de- scribe the components of the updated tool and how each domain of risk of bias is to be assessed. ) hands-on experience we will supervise the participants in working through an article de- scribing an integrative medicine clinical trial, and applying the risk of bias tool to the trial. at the end of the hands-on session, we will re- view the risk of bias assessments and answer any questions about the concepts or their application. w how to develop clinical practice guidelines for integrative medicine part : assessing the quality of the evidence used to inform a recommendation yuqing zhang , , , lisa s wieland , john j riva , clinical epidemiology and biostatistics department, mcmaster university, hamilton, canada; michael g. degroote national pain center, mcmaster university, hamilton, canada; quality, methodology and innovation (qmi), doctor evidence, santa monica, usa; center for integrative medicine, university of maryland school of medicine, baltimore, md, usa; department of family medicine, mcmaster university, hamilton, ontario, canada; department of health research methods, evidence and impact, mcmaster university, hamilton, ontario, canada correspondence: yuqing zhang (madisonz @gmail.com) bmc complementary and alternative medicine , (suppl ):w clinical practice guidelines (cpg) have become increasingly import- ant to guide optimal clinical practice. they play the crucial role of translating research findings into succinct clinically relevant recom- mendations to facilitate clinicians, patients and caregivers in making clinical decisions. when developing evidence-based cpgs, trials, sys- tematic reviews and meta-analyses are some of the most common sources of evidence to inform evidence-based recommendations. clinicians want to get a sense of how much they should trust under- lying evidence. however, the quality of the evidence depends upon many factors including the availability, biases, precision, and consistency of the underlying evidence. the quality of the evidence obtained influences the confidence in effect estimates for each out- come underpinning cpg recommendations. the grading of recom- mendations, assessment, development and evaluation (grade) approach is a systematic and transparent method for summarizing the quality of evidence for an outcome into simple phrasing for bmc complementary and alternative medicine , (suppl ): page of clinicians. the formulation of evidence-based cpgs relies upon grade assessments of the evidence, and it is therefore important for cpg developers to understand how to use this approach. grade also allows clinicians, policy makers, and consumers to use reviews’ re- sults and recommendations efficiently and reliably. this workshop will have two main components: ) a learning component; we will introduce the participants to the grade approach for quality appraisal developed by the grade working group in mcmaster uni- versity, hamilton, canada. we will describe why it is important to evaluate the quality of the evidence in the context of integrative medicine cochrane systematic reviews, the relevance of the grade approach to clinicians, researchers and policy makers, grade’s objec- tives, and the five domains that are used to assess the quality of the evidence. ) a hands-on component we will provide an example based on an evidence profile of a re- search question of interest in integrative medicine. the participants will work in small groups, applying the concepts presented in the learning section to this evidence. participants will obtain the introductory skills to assess the quality of evidence for estimates from integrative medicine cochrane system- atic reviews. this skill is important for understanding the conclusions of a cochrane-style systematic review, and essential for those who may be considering carrying out a cochrane-style systematic review. participants will also master one of the crucial steps in developing evidence-based cpgs to make evidence-based integrative medicine related recommendations. education w understanding and learning the skills to manage stress in hospital residents and medical faculty michael lumpkin , emily ratner georgetown university school of medicine, washington dc, usa; medstar health, columbia, maryland, usa correspondence: michael lumpkin (mlumpk @georgetown.edu) bmc complementary and alternative medicine , (suppl ):w numerous studies show that hospital residents and medical/ healthcare faculty suffer from excess stress, burnout, and loss of empathy. to address the challenge of healing these healers so that they may better serve their patients and themselves, we will briefly highlight the current knowledge about the physiology of the stress response in the context of the mind-body connection and describe the pathophysiological consequences of chronic stress on residents and faculty. having defined the problem, par- ticipants will learn through experiential practice how to more ef- fectively manage their own stress through the use of several mind-body medicine techniques including guided imagery, medi- tation, and autogenic biofeedback. to enhance the impact and meaning of the experiential activity, a real-time, non-invasive monitoring device will be provided to measure the result of mindfulness practice. timeline: introduction and goals- min; physiology and pathophysi- ology of stress- min; guided imagery experiential- min; con- structing a program for residents and faculty to adress stress and burnout- min; experiential session with meditation and biofeed- back with monitoring device- min; processing and discussion- min. the importance of such a session to the program is to promote the long-term health and well-being of healthcare providers so that they may more effectively and reliably provide comprehensive healthcare to patients into the future. w concepts of tcm education in china and europe - what can we learn from each other liu ping , pei jian , gesa-meyer hamme , xiaosong mao , han chouping , sven schröder longhua hospital shanghai university of traditional chinese medicine, shanghai, china; hansemerkur center for tcm at the uke, hamburg- eppendorf, germany; international education college, shanghai university of tcm, shanghai, china correspondence: sven schröder (schroeder@tcm-am-uke.de) bmc complementary and alternative medicine , (suppl ):w in china full academic education in tcm started years ago is now available throughout the country at universities and colleges on all levels including bachelor, master and phd programs. after receiving their bachelor degree, students usually choose a specialization, either acupuncture/tuina or internal (herbal) medicine for their further studies. in europe tcm is seen as an additive to western medicine after graduation. education programs started in the th but are mainly non-academical and organized by societies of physicians and practi- tioners. in germany medical doctors can reach a postgraduate specialization degree for acupuncture, education on chinese herbal medicine is not regulated. non-medical practitioners can receive a limited allowance for treatment. however, a few academical pro- grams at non-medical universities have been introduced recently in europe. based on years of sistercityship the tcm university shanghai and the hansemerkur center for tcm at the university medical center hamburg eppendorf cultivated an active exchange on all aspects of tcm with frequent reciprocal visits, cooperative research projects, co- organized symposiums and reciprocal training for many years. nowadays, many textbooks and classical texts are available in english language. furthermore, chinese scientific articles increasingly provide an english abstract and more and more research on tcm is per- formed in western countries. main differences in education can be found in didactic concepts. in china lectures are mainly teacher ori- ented with less interactive elements. in western countries, students demand modern teaching material, problem oriented learning and discussions. chinese teachers expect exact repetition of textbook contents, while western didactics pronounce context oriented learn- ing and transferal of information. however, transferal of information is only possible, if there is a basic understanding of facts and terms. one further difference is the evaluation of the phd education. in china, phd studies are seen as a combination of further qualification in the specific field and the scientific thesis. in western countries more impact is put on the experiments, thesis and the following sci- entific publication. for the internationalization of tcm education, both educational systems have to be taken into account. further- more, transfer of knowledge, exchange of teachers, harmonization of curricula and cooperative international projects are mandatory. to approve an educational academic cooperation in practice, shang- hai and hamburg are planing an academization of tcm education at a western medical university. the concept includes common teach- ing by chinese and german specialist in hamburg as well as in shanghai; and common research projects for master and phd theses. traditional healing systems w treatment of allergic rhinitis and asthma with chinese medicine josef hummelsberger , michael wullinger sms, munich, germany; medical practice, rosenheim, germany correspondence: josef hummelsberger bmc complementary and alternative medicine , (suppl ):w bmc complementary and alternative medicine , (suppl ): page of according to actual trials acupuncture and chm seem to be a alter- native method to help patients with allergic rhiniits. decicisve in tcm is a correct pattern differentiation. aim of this workshop is to help the physican to give hi a clear and practical help and guideline to use tcm in this disease effectively. medicine and arts w performing arts medicine: preventing injuries and restoring resiliency in musicians marc brodzky , , , christoff zalpour , center for integrative medicine and wellness, stamford hospital, connecticut, usa; columbia university, new york, usa; performing arts medicine association (pama), englewood, usa; inap/o, institute of applied physiotherapy and osteopathy, university of osnabrück, osnabrück, germany correspondence: marc brodzky bmc complementary and alternative medicine , (suppl ):w inap/o, institut für angewandte physiotherapie und osteopathie; hochschule osnabrück, osnabrück, deutschland performing arts medicine (pam) is the study of the prevalence, etiology and management of playing-related disorders. similar to integrative medicine, pam embodies relief of suffering from pain, nutrition and other lifestyle recommendations, and mind- body stress reduction strategies to help people overcome anxie- ties that may hinder performance during high pressure situations. musicians are predisposed to certain injuries such as musculoskeletal overuse, nerve entrapment conditions, and focal dystonia. they may also experience stress-related psychological conditions. barriers to care include affordability, access, and attitudes. this workshop/case conference session will introduce the audience to the unique health needs of performing artists. thorough history taking and pertinent physical exam may identify potential or existing performing-related conditions. preventing injury and restoring resili- ency may optimize a sense of well-being and performance in musi- cians and other artists. w using art to enhance observation skills and improve patient care and provider communication julia langley (julia.langley@georgetown.edu) arts and humanities program, georgetown lombardi comprehensive cancer center, georgetown university, washington, d.c., usa bmc complementary and alternative medicine , (suppl ):w keen observation and communication skills are critical to patient care. the ways in which we see, understand and respond to pa- tients, caregivers and colleagues are complex and often ineffect- ive due to missed cues, distractions and time constraints. if each individual and every situation is unique, how can we be certain that we convey the nuances of each case with clarity and preci- sion? especially when time is of the essence? this workshop uses the analysis of artworks, active sketching and expressive writing to teach participants how to look carefully, describe precisely and communicate directly – skills which transfer directly from the classroom to the clinic. references . herman, amy h. visual intelligence: sharpen your perception, change your life, boston: houghton mifflin harcort, . . wellbery c. the value of medical uncertainty, the lancet. ; ( ): - . discussions research d planning for and successfully conducting pragmatic trials of complementary and integrative interventions wendy weber , lanay m mudd , peter wayne , clauda witt , division of extramural research, national center of complementary and integrative health, national instititutes of health, bethesda, md, usa; osher center for integrative medicine, brigham and womens hospital, boston, ma , united states; institute for social medicine, epidemiology and health economics, charité university medicine, berlin, , germany; university of zurich, zurich, switzerland correspondence: wendy weber bmc complementary and alternative medicine , (suppl ):d in the last few years there has been a growing interest by the public and the scientific community in pragmatic clinical trials that test re- search hypotheses, which will directly inform the health care system. this interest has been driven by a number of factors including the high cost of traditional efficacy studies and the exclusion of many in- dividuals from efficacy trials resulting in results that do not generalize to many patients. the proposed discussion session will in- clude presentations that will provide definitions of pragmatic trials; how feasibility studies can inform design of large scale pragmatic tri- als and how they differ from explanatory trial feasibility studies; and provide resources for planning and conducting pragmatic trials. dr. mudd will highlight an overview of pragmatic trials and how to plan feasibility studies to inform design of pragmatic trials. dr. wayne will present results of feasibility studies of a community delivered tai chi program in preparation for larger scale studies. dr. witt will provide an overview two full scale pragmatic trial she has recently published. presenters will discuss an overview of the challenges encountered in conducting these studies and how they have overcome these chal- lenges. dr. weber will provide highlights of a pragmatic trials that are ongoing in the field of complementary health and a final sum- mary of resources developed by the nih health care system re- search collaboratory for investigators who are planning and conducting pragmatic trials (www.nihcollaboratory.org). the session will close with a panel discussion with all presenters to answer ques- tions from the audience. this session will provide attendees with a strong overview of how to conduct pilot studies to plan for successful conduct of pragmatic tri- als. attendees will also be informed of resources and tools available to help them better understand the complexity of pragmatic trials. d the future of collaborative research on complementary medicine in europe wolfgang weidenhammer , vinjar fønnebø , heather boon competence centre for complementary medicine and naturopathy, klinikum rechts der isar, tu münchen, munich, germany; nafkam, tromsø, norway; university of toronto, toronto, canada correspondence: wolfgang weidenhammer (wolfgang.weidenhammer@tum.de) bmc complementary and alternative medicine , (suppl ):d since finishing the eu-funded cambrella project – defined as a co- ordination action – no convincing organizational structure could be established yet to continue and further develop the network of euro- pean cam/im research groups. the discussion should disclose the reasons for this development and compile new ideas for a modified strategy taking into account the needs and specific conditions of the research groups. the discussion should be fuelled by short inputs: i) history of iscmr european chapter (weidenhammer), ii) http://www.nihcollaboratory.org/ bmc complementary and alternative medicine , (suppl ): page of experiences from the canadian chapter (boon), iii) organizational framework for networking provided by iscmr (fønnebø). this international meeting is an ideal platform to sort out the current situation, the need for networking and ideas for future strategies to facilitate international collaborative cam/im research. education d development of a framework to support critical enquiry in complementary and integrative medicine education programs: a collaborative discussion amie steel , , andrea bugarcic , melisa rangitakatu endeavour college of natural health, brisbane city, australia; university of technology sydney, ultimo, australia; university of queensland, brisbane, australia correspondence: amie steel (amie.steel@endeavour.edu.au) bmc complementary and alternative medicine , (suppl ):d complementary and integrative medicine practitioners face unique challenges when drawing upon relevant information sources to in- form clinical decision-making and as such require specific skills in critical enquiry to navigate the available evidence. this session will provide an overview of the current challenges facing educators within cim practitioner education programs regarding the develop- ment of critical enquiry skills in their students and provide the foun- dation for future progress in this topic. the speakers will present current research, initiatives and insights from the context of cim edu- cation which relates to critical enquiry. dr steel will present original research from cm education institutions exploring the challenges as- sociated with the inclusion of both traditional knowledge and scien- tific research within the curriculum (approx. minutes). dr bugarcic will overview a novel approach to engendering skills in critical en- quiry amongst students of cim practitioner programs (approx. mi- nutes). dr rangitakatu will discuss the role of reflectivity in critical enquiry and practitioner competence (approx. minutes). at- tendees will then to contribute to a discussion about key elements which could be included in a critical enquiry framework for cim prac- titioners (approx. minutes). the outcomes of this discussion will provide a platform to inform the advancement of meaningful and relevant critical enquiry in cim education. the international audience of the conference will strengthen the diversity of the discussion, and ensure the outcomes are appropriate and relevant to the wider inter- national cim community. d the practitioner research and collaboration initiative: establishment and baseline data for the world’s largest practice- based research network in complementary healthcare amie steel , jon adams , david sibbritt , jon wardle , matthew leach , janet schloss , helene dieze university of technology sydney, ultimo, australia; office of research, endeavour college of natural health, fortitude valley, brisbane city, , australia correspondence: amie steel bmc complementary and alternative medicine , (suppl ):d purpose practice-based research networks (pbrns) are an accepted infrastruc- ture which supports pragmatic research drawn from real-life clinical environments. there has been a strong growth in pbrns in recent years encompassing a wide range of health professions including in- tegrative medicine. the practitioner research and collaboration ini- tiative (praci) is the largest pbrn within complementary healthcare in that it encompasses fourteen ( ) different complementary medi- cine health professions. methods all cm practitioners with qualifications in the professional groups in- cluded in praci were invited to complete a workforce survey. those interested in joining praci were asked to provide contact details to link their results to a praci id number. this data was used to form the foundation of the praci membership database. results cm practitioners joined praci with the highest number of practi- tioners reporting qualifications in massage therapy (n = ; . %), naturopathy (n = ; . %), nutrition (n = ; . %), and reflex- ology (n = ; . %). the largest number of praci members have a practice based in victoria ( . %), queensland ( . %) and new south wales ( . %) although members are also represented in all other states and territories. the praci members reported diverse practice interest areas. conclusions praci is a pbrn which affords the potential to support diverse re- search projects due to its innovative sub-study design. as a result, praci offers significant opportunity to facilitate economies of scale and growth in cm research across a broad range of research areas. traditional healing systems d statutory regulation of traditional and complementary medicine professionals: operationalizing the world health organization guidelines heather boon, nadine ijaz university of toronto, toronto, canada correspondence: heather boon (heather.boon@utoronto.ca) bmc complementary and alternative medicine , (suppl ):d the world health organization has called upon states to regulate practitioners of traditional and complementary medicine (tcam) sys- tems and therapies, and an increasing number of jurisdictions are taking steps to do so. however, to date, scholarship that addresses the distinct complexities of tcam professional regulation has been scant. the objectives of this project were: ) to explore the factors that distinguish tcam professional regulation from that of biomed- ical health providers; and ) to develop a public interest framework to guide tcam professional regulation. data collection included an extensive review of literatures reporting various jurisdictions" ap- proaches to and experiences with regulating tcam providers; and re- analysis of our research team"s fifteen-year study of tcam professionalization in ontario, canada which has included a multiple sets of qualitative interviews with front line tcam practitioners and leaders, as well as a survey of all chinese medicine, naturopathy and homeopathy practitioners in the province (n = ). we found sev- eral features that differentiate tcam professional regulation from that of biomedical professionals, including: contrasting epistemic frameworks and conceptualizations of evidence; traditional medi- cine"s concurrent clinical and cultural importance; the internal diver- sity of traditional health care systems; and historically-situated, differential power relations between tcam and biomedicine. apply- ing critical theories of the professions as well as post-coloniality, we propose a principle-based framework for guiding tcam professional regulation across jurisdictions. underpinned by the principle of regu- latory equity, our framework prioritizes traditional knowledge protec- tion alongside patient safety, quality of care, and accessibility. we discuss how these principles may be diversely interpreted and ap- plied across contexts, with respect to such specific issues as: profes- sional standards, linguistic regulatory requirements, and biomedical professionals" increasing adoption of tcam practices. d how to prioritise traditional treatments for further research, including clinical trials merlin willcox, michael heinrich, george lewith, andrew flower, bertrand graz university of southhampton, southhampton, united kingdom correspondence: merlin willcox (merlin.willcox@phc.ox.ac.uk) bmc complementary and alternative medicine , (suppl ):d bmc complementary and alternative medicine , (suppl ): page of there are tens of thousands of traditional treatments used through- out the world, and limited resources for their evaluation, especially in clinical trials. to date, there have been no scientific guidelines on how to prioritise which treatments should be researched in depth, in- cluding for clinical trials. we propose to present several ideas from different viewpoints, and to engage the audience in discussing how these ideas could be developed into guidelines to improve the effi- ciency of research on traditional medicines. specifically we will have short presentations on the following approaches: . the need for consolidated standards on reporting ethnopharmacological research – prof michael heinrich . ethnopharmacological studies with diverging expections: why a consensus? – dr bertrand graz . novel methods for prioritising plants for further research – the “ritam score”; and the “retrospective treatment outcome study” – dr merlin willcox . the “ -phase model” to define good practice – dr andrew flower and prof george lewith orals research o impact of acupuncture on medication use in patients suffering seasonal allergic rhinitis – results of the acusar trial daniela adam, linus grabenhenrich, miriam ortiz, sylvia binting, thomas reinhold, benno brinkhaus institute for social medicine, epidemiology and health economics, charité - universitätsmedizin berlin, berlin, , germany correspondence: daniela adam (daniela.adam@charite.de) bmc complementary and alternative medicine , (suppl ):o background seasonal allergic rhinitis (sar) is a common disease with diminishing effects on quality of life (qol). an estimated % of the patients try to alleviate their symptoms through acupuncture. the acusar (acu- puncture in seasonal allergic rhinitis) study assessed the impact of acupuncture on sar and showed significant improvements in rhinitis specific qol (rqol), sar symptoms and the use of rescue medication (rm). we investigated patients use for antihistamines into more detail. methods patients were randomised into three study groups: acupuncture plus rm, sham acupuncture plus rm and rm alone. they documented their medication use before and during the intervention period ( weeks). main outcome were the days of antihistamine used. statis- tical analyses were conducted using parametric and non-parametric tests. robustness of the results was tested by sensitivity analyses. results data of patients were analysed. following results were deter- mined for the intervention period: the acupuncture group used anti- histamines on significantly fewer days than the other groups (acupuncture vs. sham acupuncture: mean difference = - . days, p = . ; acupuncture vs. rm: mean difference = - . days, p < . ). about % of the acupuncture group did not use any antihistamine compared to only % in the rm group. acupuncture patients did not need to increase the days of antihistamine use to handle their symptoms in contrast to patients who used rm alone. conclusions besides improving rqol and sar symptoms, acupuncture signifi- cantly reduces the use of antihistamines and can therefore be con- sidered as a valuable treatment option for sar patients. o measuring existential qualities of patients' health and suffering – the first stages of instrument development susanne andermo , , tobias sundberg , , torkel falkenberg , , johanna hök nordberg , , maria arman , division of nursing, karolinska institutet, huddinge, , sweden; i c – the integrative care science center, järna, sweden correspondence: tobias sundberg (tobias.sundberg@ki.se) bmc complementary and alternative medicine , (suppl ):o purpose patients may appreciate integrative care by its whole person and ex- istential approaches. however, such caring qualities can be difficult to measure. the aim of this swedish study was to develop a first ver- sion of an instrument measuring patients’ experiences of health and suffering with an existential focus. methods a methodological design with three phases for instrument develop- ment was used. first; an item pool was developed based on qualita- tive interviews (n = ) from patients receiving integrative care. subsequently the relevance of the items was explored in iterative rounds of cognitive patient interviews (n = and n = ). finally expert stakeholder consultations (n = ), were used to further refine the instrument. results the first phase development of the instrument resulted in two inter- related dimensions: existential qualities of "health" and "suffering", characterized by domains; "life passion and energy", "personal free- dom", "present in life" "relations" and "meaning". instrument items were formulated as word pairs on a semantic differential scale repre- senting opposite ends of a continuum. the cognitive patient inter- views and expert opinions helped to refine items and domains, but did not change the overall instrument construct. conclusions the dimensions and domains of this first version of the instrument, developed from a contemporary use of language, resemble well with theories in caring science focusing on existential qualities of health and suffering as integral to human life. the instrument is anticipated to be of value for evaluations in research, development of integrative and conventional health care practice as well as for theory develop- ment in caring science. o epigenetics alterations associated with short-term relaxation response training in healthy subjects manoj bhasin , , xueyi fan , towia libermann , , gregory fricchione , , john denninger , , herbert benson , benson-henry institute for mind body medicine, bidmc, harvard medical school, medicine, boston, ma, united states; genomics, proteomics, bioinformatics and systems biology center, department of medicine, beth israel deaconess medical center, harvard medical school, division of interdisciplinary medicine and biotechnology, and division of interdisciplinary medicine and biotechnology, boston, ma, united states; benson-henry institute for mind body medicine at massachusetts general hospital, boston, ma, united states; massachusetts general hospital, harvard medical school, boston, ma, united states correspondence: manoj bhasin (mbhasin@bidmc.harvard.edu) bmc complementary and alternative medicine , (suppl ):o background the relaxation response (rr) is the physiological and psychological opposite of the fight-or-flight or stress response. the rr has been re- ported to be effective in a number of disorders that are believed to be caused or exacerbated by stress. we had performed multiple gen- omics and systems biology studies in healthy and disease conditions bmc complementary and alternative medicine , (suppl ): page of to understand the molecular mechanism of rr. our studies provided compelling evidence that the rr elicits specific gene expression changes linked to upregulation of energy production and insulin se- cretion, and downregulation of nf-kb mediated inflammation. methods to explore further whether the beneficial effects of rr are associated with upstream epigenetic modifications (specifically, changes in dna methylation), we now report a pilot study on healthy subjects be- fore and after weeks of rr training. to identify rr-associated epi- genetic changes, we performed genome-wide bisulfite sequencing to measure methylation changes. we also carried out integrated ana- lysis of methylation and transcriptome data to identify molecular al- terations which affect both regulatory and transcriptional genomic spaces. results comparison of pre- and post- rr methylation data identified , significantly hypo- or hyper- methylated regions (adjusted p value < . ), corresponding to hyper- and hypo- methylation of , and , genes, respectively. pathway enrichment analysis revealed sig- nificant hypo-methylation of genes linked to: neuron and muscle cell differentiation and development; lipid metabolism; mrna processing and mapk signaling. a similar analysis revealed hyper-methylation of multiple pathways, including: interferon gamma response; cell cycle regulation; and systemic lupus erythematosus. we also performed an integrated analysis of our epigenetic and gene expression data from a previous study of healthy subjects (n = ). the comparison identified multiple pathways that significantly im- pacted both at the transcriptional and epigenetics levels: electron transport chain signaling pathways had significant hypo-methylation and up-regulation at the gene expression levels, indicating a positive effect of rr on energy production, mrna processing, gpcr ligand binding and epithelial cell differentiation pathways. further regula- tory analysis of epigenetics and transcriptional data showed activa- tion of insr, a key molecule in insulin signaling, indicating that rr may have a positive effect on glucose metabolism. similarly, the ana- lysis indicated inhibition of the expression of il , a key cytokine asso- ciated with chronic inflammation, supporting the role of rr in downregulating inflammation. conclusion this pilot study provides a unique insight into how the rr effects dna methylation and gene expression of energy production, glucose metabolism and immune response pathways. o prolonged fasting in t dm – case study from patient perspective bettina berger , rainer stange , andreas michalsen , david d martin , university witten/herdecke, health, herdecke, germany; immanuel hospital, berlin, germany; hospital of children, university, tuebingen, germany; hospital of children, filderstadt, germany correspondence: bettina berger (bettina.berger@uni-wh.de) bmc complementary and alternative medicine , (suppl ):o background fasting as a medical treatment has been proven to be a valuable therapeutic method for chronic diseases like rheumatoid arthritis, hypertension, and metabolic syndrome [ ]. for patients with type diabetes mellitus (t dm), fasting therapies has neither been recom- mended nor excluded by fasting guidelines [ ] and most fasting clinics do not accept people with t dm for fear of ketoacidosis. the literature on fasting in t dm is scarce and limited to fasting during ramadan [ ]. aims: report on a single case study of prolonged fasting in a t dm patient for about seven days. methods a femal patient (age y) suffering from t dm for years, decided to fast on her own. fasting during days scheduled a reduction of insulin dosage from around units short acting insulin and units basal insulin/d to basal insulin only ( units/d). the faster took water, tea, and vegetable broth only. she measured blood sugar level daily - times and took carbohydrates in case of blood sugar level below mg/dl. she decided to measure ketone body daily and to take carbohydrate in case of uncertanty. results fasting was performed during days without any carbohydrate in- take. only two times a mild hypoglycemia (treated with two units of carbohydrates) and two times a mild hyperglycemia (treated with four units of short acting insulin) but no serious hypoglycemia or hyperglycemia, not ketoacidosis occurred. glucose profil were bal- anced between and mg/dl, av. mg/dl during the whole time. the patient felt very well. conclusion to the best of our knowledge, this is the first case report on pro- longed complete fasting in t dm. it indicates that persons with type diabetes can participate safely in prolonged fasts provided they re- duce their usual insulin dose and carefully supervise their blood sugar level. interventional studies are needed on the effects of fast- ing on metabolism, quality of life and longevity. literatur . michalsen a, li c. fasting therapy for treating and preventing dis- ease - current state of evidence. forsch komplementmed. ; ( ): - . . wilhelmi de toledo f, buchinger a, burggrabe h, holz g, kuhn c, lischka e, et al. fasting therapy - an expert panel update of the consensus guidelines. forsch komplementmed. ; ( ): - . . alabbood mh, ho kw, simons mr. the effect of ramadan fasting on glycaemic control in insulin dependent diabetic patients: a litera- ture review. diabetes & metabolic syndrome. .# o hypnotherapy or transcendental meditation versus regular relaxation exercises in the treatment of children with primary headaches: a multi-centre, pragmatic, randomized clinical study inge boers , arine vlieger , miek jong louis bolk institute, driebergen, la, netherlands; antonius hospital, nieuwegein, netherlands correspondence: inge boers (i.boers@louisbolk.nl) bmc complementary and alternative medicine , (suppl ):o questions to investigate the effectiveness of hypnotherapy or transcendental meditation (tm) versus regular relaxation exercises added to usual medical treatment of paediatric primary headaches. methods a pragmatic, randomized controlled trial was carried out in six hospi- tals in de netherlands. children (age - years) with primary head- ache and headache attack frequency of ≥ times per month were randomized to receive either hypnotherapy or tm or regular relax- ation exercises (control group), in addition to usual medical treat- ment. primary outcome were mean frequency of primary headache attacks and clinically relevant (> %) reduction in headache fre- quency, after three months of intervention. secondary outcome was subjective improvement in symptoms (adequate relief). results children were included: hypnotherapy (n = ), tm group (n = ) and control group (n = ). mean age was . years and % was female. preliminary analysis were performed and showed that headache frequency was significantly reduced after months for all groups from to days with headache per month (p = . ). no significant differences were found between the groups (p = . ). the percentage of children with clinically relevant reduction in head- ache attacks was % and did not significantly differ between the three groups. subjective improvement after intervention (adequate relief) was reported by % of children, with no significant difference between groups, although there was a positive trend for hypnother- apy ( , % versus % in tm and control group, p = . ). no ad- verse events were reported. conclusions final analysis and conclusions with respect to the effects of hypno- bmc complementary and alternative medicine , (suppl ): page of therapy or meditation versus regular relaxation techniques on pri- mary headaches in children will be completed before the start of the conference and presented there. o cupping in chronic low backpain – a randomized three-armed partly-blinded clinical trial benno brinkhaus, michael teut, alexander ullmann, miriam ortiz, gabriele rotter, sylvia binting, fabian lotz, stephanie roll institute for social medicine, epidemiology and health economics, charité university, berlin, , germany correspondence: benno brinkhaus (benno.brinkhaus@charite.de) bmc complementary and alternative medicine , (suppl ):o background cupping is used frequently in chronic low back pain (clbp) although its effectiveness is not clear. the study aim was to investigate the ef- fectiveness of pulsatile cupping in clbp. methods clbp patients were randomly allocated to ) pulsatile cupping ( treatments), ) minimal cupping ( treatments) or ) a control group. all groups received paracetamol on demand. patients in both cup- ping groups were blinded in regard to which cupping they received. primary outcome was the pain intensity measured with the vas ( - mm) after weeks. secondary outcomes included back function measured with the funktionsfragebogen hannover rücken (ffbh-r) and paracetamol intake. results a total of patients were randomized to pulsatile cupping (n = ), minimal cupping (n = ) and control group (n = ). the mean adjusted (for baseline values) vas pain intensity after weeks for the pulsatile cupping group was . ( % ci: . ; . ), . ( . ; . ) for minimal cupping and . ( . ; . ) for control group (group dif- ferences: cupping vs. control (p < . ); minimal cupping vs. control (p = . ); pulsatile cupping vs. minimal cupping (p = . )). after weeks vas pain intensity was significantly lower for pulsatile cup- ping vs. control (- . ( . ; . ); p = . ), but not for minimal cup- ping vs. control (- . (- . ; . ), p = . ) and pulsatile cupping vs. minimal cupping ( . (- . ; . ); p = . ). pulsatile cupping was bet- ter than (p = . ) control for back function after weeks, but not after weeks (p = . ). minimal cupping was not significant better than control after and weeks. paracetamol intake did not differ significantly between the groups. conclusion both forms of cupping were efficacious in patients with clbp after weeks. however only pulsatile cupping showed significant effects compared to control in some outcomes after weeks. o developing an integrative treatment program for cancer-related fatigue with stakeholder engagement claudia canella , michael mikolasek , matthias rostock , jörg beyer , matthias guckenberger , josef jenewein , esther linka , claudia six , sarah stoll , roger stupp , claudia m witt institute for complemetary and integrative medicine, university hospital zurich, zurich, switzerland; department of oncology, university hospital zurich, zurich, switzerland; department of radiation oncology, university hospital zurich, zurich, switzerland; department of psychiatry and psychotherapy, university hospital zurich, zurich, switzerland; patient and member of the stakeholder advisory board, university hospital zurich, zurich, switzerland; cancer league ostschweiz, st. gallen, switzerland correspondence: claudia canella (claudia.canella@usz.ch) bmc complementary and alternative medicine , (suppl ):o background although cancer-related fatigue (crf) has gained increased attention in the past decade, it remains difficult to treat. an integrative ap- proach combining conventional and complementary medicine (cm) interventions seems promising. treatment programs are more likely to be effective if the needs and interests of the people involved are well represented. this can be achieved by stakeholder engagement. objectives the aim of the study was to develop an integrative crf treatment program using stakeholder engagement and comparing it to an expert's version. method in a qualitative study a total of stakeholders ( oncologists, psycho-oncologist, radiation-oncologist, nurses/nurse experts, patients, patient family member, representative of the swiss can- cer league) were interviewed either in a face-to-face or in a focus group setting. for data collection and data analyses the method of qualitative content analyses was used. results the stakeholder engagement resulted in an adjustment to the indi- vidual and real-life situations and in a request for highlighting inter- ventions where patients can be active. compared to the expert's version which had all intervention options on the same level, the stakeholder engagement resulted in a program with different levels. the first level includes non-pharmacological mandatory inter- ventions, the second non pharmacological choice based interven- tions and the third pharmacological interventions for severe crf. conclusion by adopting the approach of stakeholder engagement, we integrated the needs and preferences of people who are directly affected by crf. this resulted in an integrative crf treatment program with graded recommendations for interventions and therefore with a higher potential to be sustainable in a usual care setting. o patient perceptions of group and individual acupuncture in an urban, underserved, primary care setting elisabeth chuang , , ben kligler , melissa d mckee , icahn school of medicine at mount sinai, department of family and community medicine, brooklyn, new york, ny, united states; albert einstein college of medicine, family and social medicine, bronx, new york, ny, united states correspondence: ben kligler (benkligler@gmail.com) bmc complementary and alternative medicine , (suppl ):o question what are the perceptions of patients from an ethnically diverse, urban, underserved population on the experience of acupuncture for pain in the individual setting vs. the group setting? background in march , the acupuncture approaches to decrease disparities in pain treatment (aaddopt- ) trial, a two-arm comparative effect- iveness trial, was launched to assess whether acupuncture for chronic pain delivered in a group setting is as effective as individual acu- puncture in an underserved and ethnically diverse patient population at risk for health disparities. the trial has recruited of a projected patients and will conclude in late . a second objective of the aaddopt- trial was to use qualitative analysis to better under- stand the patient experience of both individual and group acupuncture. methods semi-structured open-ended interviews were conducted with par- ticipants in each study arm. the interview guide was created through interactive process including research team members and patient stakeholders. questions aimed to elicit patients’ pain narrative; ex- perience of acupuncture during sessions and social interactions; and perceptions of the outcomes of acupuncture. the sample was pur- posely selected for representation of both genders, all study sites and patients with good and poor functional status. interviews were conducted by phone, audiotaped and transcribed verbatim. material was coded using dedoose software and analyzed using a constant comparison technique bmc complementary and alternative medicine , (suppl ): page of results patients in both study arms valued the pain relief, holistic approach and relaxation experienced during acupuncture. the relationship with the acupuncturist was described positively by patients in both arms, but with greater richness by patients in the individual arm. a minority of patients in both arms cited concerns about privacy and receiving acupuncture in mixed gender groups, however, patients who were assigned to group acupuncture noted that being allowed to wear street clothing and acupuncturist efforts to maintain privacy assuaged their concerns. a small number of patients assigned to group acupuncture noted an ongoing feeling of vulnerability around being in pain due to needling in a public setting. a few patients assigned to group acupuncture expressed that non-clinical physical environment gave them initial misgivings about the legitimacy of acupuncture treatments. group dynamics varied; some groups fos- tered a supportive, therapeutic interaction between patients, while others were more reserved conclusions there were important differences in the experience of acupuncture in the group vs. individual setting. patients in both arms valued their acupuncture experience. and group patients reported both positives and negatives regarding the group experience. o yoga for women diagnosed with breast cancer – a systematic review and meta-analysis holger cramer , , romy lauche , petra klose , silke lange , jost langhorst , gustav dobos department of internal and integrative medicine, university of duisburg-essen, essen, , germany; research center in complementary and integrative medicine, university of technology sydney, sydney, australia correspondence: holger cramer (h.cramer@kliniken-essen-mitte.de) bmc complementary and alternative medicine , (suppl ):o question what are the effects of yoga on health-related quality of life, mental health, and cancer-related symptoms in women diagnosed with breast cancer? methods this abstract is based on a draft and pre-peer review version of a cochrane review. upon completion and approval, the final version is expected to be published in the cochrane database of systematic reviews (www.cochranelibrary.com). the cochrane breast cancer group specialised register, medline, embase, indmed, and central were searched through february for randomized controlled tri- als (rcts) assessing the effects of yoga on health-related quality of life, depression, anxiety, fatigue, or sleep disturbances in women di- agnosed with breast cancer. for each outcome, standardized mean differences (smd) and % confidence intervals (ci) were calculated. the quality of evidence was assessed using the cochrane risk of bias tool and the grade recommendations. results twenty-four rcts on , women were included. compared to no therapy, moderate quality evidence for short-term effects of yoga was found for health-related quality of life (smd = . ; %ci = . , . ; i = %), fatigue (smd = - . ; %ci = - . ,- . ; i = %), and sleep disturbances (smd = - . ; %ci = - . ,- . ; i = %). compared to psychosocial/educational interventions, moderate quality evidence for short-term effects on depression (smd = - . ; %ci = - . ,- . ; i = %), anxiety (smd = - . ; %ci = - . ,- . ; i = %), and fatigue (smd = - . ; %ci = - . ,- . ; i = %) was revealed. no group difference compared to exercise occured. no serious adverse events were reported. conclusions moderate quality evidence supports the recommendation of yoga as a supportive intervention for women diagnosed with breast cancer. very low quality evidence suggests that yoga might be equally ef- fective as other exercise interventions. o acupuncture and related therapies for treating irritable bowel syndrome: overview of systematic reviews and network meta- analysis vincent ch chung , hoi lc wong , xin y wu , grace yg wen , robin st ho , jessica yl ching , justin cy wu jockey club school of public health and primary care, the chinese university of hong kong, shatin, hong kong; department of medicine and therapeutics, the chinese university of hong kong, shatin, hong kong correspondence: vincent ch chung (vchung@cuhk.edu.hk) bmc complementary and alternative medicine , (suppl ):o purpose recent clinical evidence has shown the effectiveness of acupuncture and related therapies for improving irritable bowel syndrome (ibs) symptoms. however, the relative performance among different types of acupuncture and related therapies is unknown. this network meta-analyses (nma) was conducted to evaluate comparative effect- iveness of various acupuncture and related therapies. methods eight electronic databases were searched for srs focusing on ran- domized controlled trials (rcts) which investigated acupuncture and related therapies among ibs patients. data from rcts were extracted for pair-wise meta-analyses. nma was used to explore the most ef- fective treatment option. results from srs, rcts (n = , ) assessing acupuncture and related therapies were included. result from pair-wise meta-analyses showed that acupuncture did not have significant beneficial effect on treat- ing pain and diarrhoea symptoms among ibs patients when com- pared with pinaverium bromide (an oral western medication). three trials comparing moxibustion, electroacupuncture and catgut embed- ding with pinaverium bromide demonstrated beneficial effects of various types of acupuncture on treating ibs overall symptoms (rr = . , %ci: . to . , moxibustion; rr = . , %ci: . to . , electroacupuncture; rr = . , %ci: . to . , catgut embed- ding). results from nma of seven rcts showed no differences on the comparative effectiveness among five types of acupuncture and related therapies, but moxibustion had the highest probability ( . %) of being the best option for improving ibs overall symptoms. conclusion the effectiveness of all acupuncture and relative therapies reviewed on treating ibs symptoms appeared to be similar, with moxibustion showing the highest probability of being the best treatment on ibs. to confirm the effectiveness of moxibustion, well conducted, ad- equately powered trials are needed in the future. o the experience of a pet therapy visit on patients in an acute care setting amanda coakley , jane flanagan , , christine annese , joanne empoliti nursing, massachusetts general hospital, boston, ma, united states; boston college, chestnut hill, ma, united states correspondence: amanda coakley (abcoakley@partners.org) bmc complementary and alternative medicine , (suppl ):o background limited research supports pet therapy for people who are hospital- ized. findings from one study indicated that pet therapy was benefi- cial to patients post-vascular surgery (coakley & mahoney, ). earlier research indicated that following pet therapy visits, patients reported feeling happier calmer and less alone (cole & gawlinski, ). another study with patients on general care units found that they reported feeling comforted, satisfied, relaxed, attached, and peaceful after dog visits (coakley ). specific aims/question to explore the outcomes related to well-being, stress, and comfort in patients who participate in the dog pet therapy program at massa- http://www.cochranelibrary.com/ bmc complementary and alternative medicine , (suppl ): page of chusetts general hospital (mgh): methods this study employed a descriptive non-experimental design and a convenience sample to explore the experience of dog pet therapy program on well-defined outcome measures pre - and post a pet therapy visit. the sample included patients on four inpatient surgical units. measures included: vital signs, visual analog scale (vas) of comfort and well-being, the spielberger state anxiety and salivary cortisol levels. demographic variables related to the sample were also captured. results preliminary results show that there is significant improvement in pulse, respirations, level of comfort and well being following a pet therapy visit. conclusion a dog pet therapy program in the hospital setting is beneficial to pa- tients in regards to their level of comfort and well-being. further re- search is needed to determine if this program is beneficial to patients across other settings. o acupuncture at acupoints may prevent risks of cardiovascular diseases in migraine patients by reversing plasma glutamate and apob ratio zishan gao , xugang liu , shuguang yu , xianzhong yan , fanrong liang helmholtz zentrum münchen, research unit of molecular epidemiology (ame), munich, germany; chengdu university of tranditional chinese medicine, chengdu, china; national center of biomedical analysis, beijing, china correspondence: zishan gao (zishan.gao@helmholtz-muenchen.de) bmc complementary and alternative medicine , (suppl ):o question the efficacy difference between acupuncture and sham acupuncture arise great debate in evidence-based medicine. the aim of the current study was to investigate the metabolomic evidence for the efficacy difference between acupuncture and sham acupuncture in treating migraine by using h nuclear magnetic resonance (nmr)- based metabolomic technology. methods we recruited migraine patients and health adults. first, h-nmr experiment and multivariate analysis were conducted to characterize metabolic profiling of migraine and potential biomarkers for migraine patients. second, migraine patients were randomly assigned to special acupoints group and non-acupoints group. acupuncture treatment were accordingly practiced on these groups lasted for two sessions. h-nmr experiment was conducted, multivariate analysis and ingenu- ity pathway and network analysis (ipa) was used to identify function change and metabolic pathway difference between acupuncture at acupoints and acupuncture at non-acupoint in predicted protein- metabolomic network model of migraine. results we found that metabolic profiling of acupuncture at acupoints group change very similar to health adults as acupuncture treatment ses- sion increases. metabolites including citrate, acetone, pyruvate, glu- tamate, creatine, ldl were significant reversed after session of acupuncture treatment. in contrast, metabolic profiling of non- acupoints group was clearly separated from health adults as treat- ment session increases. only glutamate, a classic migraine biomarker, was significantly reversed after session of treatment in acupuncture at non-acupoints group. particularly, acupuncture at acupoints could reverse novel cardiovascular biomarker- apob ratios in predicted pro- tein- metabolomic network model, and also could significantly acti- vate lipid metabolism function and decrease amino acids metabolism function in predicted bio-function migraine model. how- ever, acupuncture at acupoints did not exhibit such effect in the pre- dicted protein-metabolic migraine model. conclusions our data suggest acupuncture might exhibit non-specific effect on both acupoints and non-acupoints by decreasing plasma glutamate therefore reliving migraine attack. however, acupuncture at acu- points may exhibit sustained effect on migraine by gradually reverse the metabolic profiling of migraine patients compared with acupunc- ture at non-acupoints. in particular, acupuncture at acupoint but not non-acupoints may prevent risks of cardiovascular diseases in mi- graine patients by reversing both plasma glutamate and apob ratio. o effectiveness of leech therapy in treatment of chronic low back pain - a randomized controlled clinical study christoph d hohmann , nico steckhan , thomas ostermann , arion paetow , evelyn hoff , andreas michalsen internal and complementary medicine, charité university, berlin, germany; department of psychology and psychotherapy, university of witten/herdecke, witten/herdecke, germany; kpw garbsen, garbsen, germany correspondence: christoph d hohmann (christoph.hohmann@charite.de) bmc complementary and alternative medicine , (suppl ):o question low back pain has a high relevance in means of prevalence and so- cioeconomic burden. this paper presents a clinical trial assessing the effectiveness of medical leech therapyin chronic low back pain. methods we aimed to investigate the effectiveness of leech therapy in chronic low back pain. forty-fourpatients with chronic low back pain who scored > mm since at least months on a mm vas pain scale were randomized to a single treatment with - locally applied leeches (leech group) or a day course with back exercise once a week for one hour led by a physiotherapist. primary outcome meas- ure was change of overall pain on the mm vas from baseline to day . secondary outcomes were overall impairment (bothersome- ness) by pain ( mm vas), disability (roland morris disability scale, funktionsfragebogen hannover), quality of life (sf- ), and pain per- ception (ses). patients were examined baseline and at days and after treatment. results overall pain score at day was reduced from . /- . to . /- . in the leech group (n = ) and from . /- . to . /- . in back exercise group (n = ) (mean group differ- ence - . ; %ci - . to - . ; p = . ). significant treat- ment effects were also observed for bothersomeness, disability, quality of life and pain perception. results were not affected by outcome expectation. conclusions a single course of leech therapy is effective in relieving pain, improv- ing disability and quality of life for at least months. leech therapy is an effective option in the treatment of chronic low back pain. the study is registerd at german clinical trials register under identifier drks . o andrographis paniculata for symptomatic relief of acute respiratory tract infections: a systematic review and meta-analysis xiao-yang hu , ruo-han wu , martin logue , clara blonde , lily y lai , beth stuart , andrew flower , yu-tong fei , michael moore , jian-ping liu , george lewith university of southampton, southampton, so st, united kingdom; centre for evidence-based chinese medicine, beijing university of chinese medicine, beijing, china; agroparistech, paris institute of technology for life, food and environmental sciences, paris, france correspondence: xiao-yang hu (x.hu@soton.ac.uk); george lewith bmc complementary and alternative medicine , (suppl ):o bmc complementary and alternative medicine , (suppl ): page of purpose this systematic review aimed to evaluate the clinical effectiveness and safety of a. paniculata for symptoms of acute rtis. methods nine databases were searched from their inceptions to march for randomised controlled trials (rcts) evaluating oral a. paniculata without language barriers. the primary outcomes were improvement in rti symptoms and adverse reactions. random effects model was used to poolthe standardised mean differences and risk ratio to in- corporate heterogeneity with % ci reported. methodological qual- ity was evaluated using the cochrane risk of bias; reviewers independently screened eligibility and extracted data. results thirty-three rcts ( patients) were included. interventions in- cluded a. paniculata as a monotherapy and as an herbal formula. most trials evaluated a. paniculata provided commercially but sel- dom reported manufacturing or quality control details. it showed sta- tistically significant effect in favour of a. paniculata versus placebo (n = , smd: - . , %ci [- . , - . ] for overall symptom; n = , smd: - . , %ci [- . , - . ] for cough; and n = , smd: - . , % ci [- . , - . ] for sore throat). favourable effects were shown when compared a. paniculata to standard care, and other herbal in- terventions. no major aes were reported and minor aes were mainly gastrointestinal. the methodological quality of included trials were limited. conclusions a. paniculata appears beneficial and safe for relieving rti symptoms and shortening time to symptom resolution. the evidence is incon- clusive due to limited study quality and heterogeneity. well-designed trials evaluating the effectiveness and safety of a. paniculata are warranted. o yoga in school sport - a non-randomized controlled pilot study in germany including a qualitative evaluation michael jeitler , , hannah zillgen , manuel högl , nico steckhan , barbara stöckigt , georg seifert , andreas michalsen , , christian kessler , immanuel hospital berlin, department of internal and complementary medicine, , berlin, germany; charité - university medical center, berlin, germany; university potsdam, potsdam, germany correspondence: michael jeitler (mika.jeitler@gmail.com) bmc complementary and alternative medicine , (suppl ):o question we aimed to evaluate potential effects of a -week yoga course as an alternative for regular school sport. methods a cohort study design with an active control group (school sport) was implemented in two secondary schools. primary outcome meas- ure was stress (cps) from baseline to week . secondary outcomes included depression/anxiety (hads), attention (d ), quality of life (who- ), mood states (poms) and vas for general pain, neck pain, headache, fatigue and sleep quality. outcome parameters were assessed at baseline, at week , and at a -month follow-up. a per- protocol analysis using mixed linear models was performed. further- more qualitative interviews in focus groups with participants each were performed. results adolescents were screened for eligibility. ( % female; mean age . ± . years) were included into the study ( participants in yoga classes and participants in school sport classes). data sets were included in the final analysis. yoga significantly reduced anxiety/depression when compared to school sport after weeks (p = . ). no significant treatment ef- fects were found for the other outcome measures. although nonsig- nificant, yoga showed greater improvement compared to school sport for most other outcomes. the -month follow-up showed in- consistent results. in the qualitative interviews participants evaluated yoga classes en- thusiastically and reported a variety of physical and psychological benefits as well as overall restorative effects. conclusions yoga may be an effective method for coping with anxiety/depression in school sport settings for adolescents. well-designed rcts includ- ing active control comparisons are warranted. o explain the perception and experience of infertile women undergoing ivf/icsi from acupressure: a qualitative study talat khadivzadeh, maryam hassanzadeh bashtian, shapour badiee aval, habibollah esmaily mashhad university of medical sciences, mashhad, iran, islamic republic of correspondence: maryam hassanzadeh bashtian (m.h.bashtian@gmail.com) bmc complementary and alternative medicine , (suppl ):o question fertility in many cultures has a high value. if it fails, it can become a destructive emotional experience. in this crisis situation, infertile cou- ples more than other people are affected by depression, anxiety, low self-esteem and dissatisfied. the aim of this study is to explain the perception and experience of infertile women undergoing ivf/icsi from acupressure. methods this study was a qualitative study and performed on the infertile women undergoing ivf/icsi in milad ivf center, imam reza hospital, mashhad university of medical sciences. qualified individuals pur- posefully selected according to inclusion and exclusion criteria and were randomly divided into two groups of real and sham acupres- sure. in the real acupressure group, p and ht points on two hands were under acupressure. points in the sham acupressure group were two centimeters away from the main points. acupressure was per- formed in twelve sessions. four sessions were done by the practi- tioner and eight sessions by own patient. acupressure was trained to the patient by practitioner. after intervention participants were inter- viewed. then, interviews were organized and coded. data analysis was done by using of conventional content analysis based on three primary phases of preparation, organization and reporting. results results of the experience and perception were in two categories. those were body understandings and positive experiences from acupressure. conclusion this study showed that acupressure is effective on infertile women health. further research is justified about social flexibility and individ- ual in women in related to reproductive and sexuality issues. o differences in the tongue features of primary dysmenorrhea patients and controls jihye kim, keun h kim korea institute of oriental medicine, km fundamental research division, daejeon, south korea correspondence: keun h kim (rkim@kiom.re.kr) bmc complementary and alternative medicine , (suppl ):o objective the aim of this study is to investigate the relationships between tongue features and the presence or absence of menstrual pain. methods this study was designed as a prospective, observational study and was conducted at the kyung hee university hospital. a total of eli- gible participants aged to years were enrolled and assigned to two groups, with primary dysmenorrhea (pd) patients in group a and healthy subjects in group b, according to their visual analogue scale (vas) scores. group a included females with pd caused by bmc complementary and alternative medicine , (suppl ): page of qi stagnation and blood stasis syndrome (qsbs) with vas scores ≥ . group b, the healthy subjects, included females with few premen- strual symptoms and vas scores < . all participants completed four visits (menses-follicular-luteal-menses phases) and tongue images were obtained using a computerized tongue image analysis system. results the results of this study showed that the tongue coating thickness in the menstrual phase of the pd group was significantly less than that of the control group, and the tongue body was more reddish in the pd group than in the control group. conclusions according to traditional korean medicine theory, patients with typ- ical qsbs normally exhibit a purplish tongue and thin coating. the results of this study will provide basic information that may be used as a reference for further studies and to establish the principles of tongue diagnosis. additionally, the present study suggests the useful- ness of tongue features as an objective diagnostic tool. o aromatherapy as a non-pharmacological intervention for dementia care – a review carina klocke, stefanie joos university hospital tübingen, institute of general practice and interprofessional care, tübingen, germany correspondence: carina klocke (carina.klocke@med.uni-tuebingen.de) bmc complementary and alternative medicine , (suppl ):o question non-pharmacological interventions in the area of complementary and alternative medicine are used to increase the well-being and quality of life of dementia patients. as low-threshold interventions, they are capable to be used by patients themselves or their care- givers, and possess a low risk of side effects. we earlier conducted a systematic research in order to identify their evidence. two promis- ing systematic reviews on aromatherapy show potentially positive ef- fects for dementia care. however, inclusion criteria were very heterogeneous and, therefore, clear recommendations for the use of aromatherapy cannot be made. hence, this study adopted a more homogeneous approach with the intention to draw specific recommendations. methods a two-step approach was chosen: first, a research aiming at a scop- ing review on aromatherapy was conducted in pubmed from / until / , including primary studies on patients with a diagnosis of dementia in english or german, interventions of aroma- therapy/-massage, and control with other interventions or placebos or none. there was no restriction on specific outcome parameters. second, studies assessing the use of lavender oil, most commonly used in the included studies, were chosen to produce a homoge- neous verbal synthesis. results in the first step, n = studies were identified. title and abstract screening left n = relevant studies for inclusion. a first analysis of the full texts showed the use of the following plants: lavender (n = ), lavender/orange (n = ), melissa (n = ), lavender/orange in turn with rosemary/lemon (n = ), lavender in turn with sweet orange and tea tree (n = ), not specified (n = ). focusing on lavender, the study designs are rcts (n = ), cts (n = ), no control (n = ). the ways of application are air diffusion (n = ), aroma massage (n = ), dermal application (n = ), unknown (n = ); n = studies examined more than one condition. group sizes vary between n = and n = . over- all, n = studies using lavender show positive effects on agitation, behavioral and psychological symptoms, anxiety and insomnia; n = studies cannot conclude any consistent effects. the combination of aromatherapy with massage tends to be more effective. conclusion aromatherapy, with lavender in particular, shows potential for in- creasing the quality of life and well-being of dementia patients, inde- pendent of the way of application, e.g. through decreasing behavioral and psychological symptoms. despite the number of studies and their samples being small and a meta-analysis hence be- ing as likely as not possible, starting points for further research and challenges will be discussed at the congress. o nigella sativa oil supplementation in asthma: a randomised, double-blind, placebo-controlled, exploratory phase-ii clinical trial abdulrahman koshak , li wie , emad koshak , siraj wali , omer alamoudi , abdulrahman demerdash , majdy qutub , peter pushparaj , michael heinrich ucl school of pharmacy, university college london, london, wc n ax, united kingdom; faculty of medicine, king abdulaziz university, jeddah, saudi arabia correspondence: abdulrahman koshak (abdulrahman.koshak. @ucl.ac.uk) bmc complementary and alternative medicine , (suppl ):o background long-term medications in patients with asthma are needed to con- trol the underlying inflammation and prevent symptoms. however, asthma control is considered to be suboptimal regardless of the availability of conventional treatments. traditionally, nigella sativa l. (ns), known as black cumin seed, is thought to be effective in treat- ing asthma or its key symptoms. objective our aim is to investigate the benefits of ns supplementation on clin- ical and inflammatory parameters of bronchial asthma in patients on standard therapy. material and methods a chemically characterised ns oil product (marnys®) marketed as a food supplement was used in a randomised, double-blind, placebo- controlled, phase ii trial (rdbpct) with asthma patients. the primary outcome was the asthma control test (act). the secondary out- comes were lung function (predicted fev %), blood eosinophils, serum total immunoglobulin e (ige), and multiple inflammatory mediators. results between jun and dec , , patients were enrolled, with patients each randomly assigned to treatment and placebo groups. after weeks, patients had withdrawn from each group. ns showed a statistically significant improvement in act and blood eo- sinophils count. ns showed non-significant elevation of predicted fev %. changes in inf-gamma, il- , and il- p were noteworthy between both groups. conclusions ns appeared to improve asthma symptoms, and some asthma- related biomarkers. future studies should follow patients for a longer period and be a multicentre. trial registration: the trial was registered with clinicaltrials.gov, iden- tifier nct . keywords: herbal medicines, clinical trial, rct, asthma, nigella sativa, black seed o research in integrative pediatrics at a university children's hospital in munich, germany sigrid kruse, isabell fischer, nadine tremel, joseph rosenecker dr. von hauner's children's university hospital munich, department for integrative and rehabilitative pediatrics, munich, germany correspondence: sigrid kruse (sigrid.kruse@med.uni-muenchen.de) bmc complementary and alternative medicine , (suppl ):o background the project integrative pediatrics was initiated in in three chil- dren’s hospitals in germany: munich (dr. von hauners children uni- versity hospital), landshut and essen. integrative pediatrics means the best of conventional medicine plus complementary medicine in- cluding homeopathy and mind-body-medicine. it involves patient care, research and education. the primary aim is to clarify which bmc complementary and alternative medicine , (suppl ): page of methods are suitable for children in the two criteria effectiveness and safety. homeopathy has been shown to fulfil these criteria very well since , when integration of single-remedy-homeopathy began at the dr. von hauners childrens university hospital in munich. methods research is being conducted as prospective studies in the following fields: � hypnotherapy in children when taking blood � recurrent urinary tract infections in children: phytotherapy, homeopathy and conventional therapy in comparison � recurrent chronic obstructive bronchitis in children: single- remedy-homeopathy as add-on-therapy � postoperative urinary retention in children: is the single- remedy-homeopathy effective to help in urination and to pre- vent the catheterization? results preliminary results will be presented in may on the wcimh in berlin. conclusion the promising results of observational studies will be investigated more closely. the conclusions to be drawn will depend on the results obtained key words: integrative pediatrics, university childrens hospital mun- ich, research, homeopathy, hypnotherapy, phytotherapy o pilot study of acupuncture to treat anxiety in children and adolescents brenda leung , wendy takeda university of lethbridge, health sciences, lethbridge, canada; elements physical therapy and acupuncture ltd, lethbridge, canada correspondence: brenda leung (brenda.leung@uleth.ca) bmc complementary and alternative medicine , (suppl ):o background the prevalence of anxiety disorders in children has been estimated to be as high as %. current treatments for paediatric anxiety have had limited success. recently, studies show acupuncture to be rela- tively safe and effective, even in children. objectives to study the use of acupuncture for pediatric anxiety, and evaluate the feasibility of the randomization process, adherence to the inter- vention by this population, and changes to measures of anxiety. methods this pilot study was a randomized control trial of children with anx- iety, age to , and living in lethbridge, ab and the surrounding communities. participants were randomized to acupuncture or wait- list control groups. participants in the waitlist group was given acu- puncture after a wait-period of weeks (matching the time the treat- ment group received acupuncture). anxiety was measured using the multidimensional anxiety scale for children (masc) self and parent rating forms, and the hamilton anxiety rating scale for children and adolescent (ham-a). acupuncture was provided by a licensed acu- puncturist at session per week for weeks. the nurse using the ham-a was blinded to the children"s group assignment. results nineteen participants were enrolled, with in the treatment and in the waitlist group. children in the acupuncture group had lower masc-parent scores following completion of the acupuncture session than children in the waitlist (no acupuncture) group (p < . ). scores were significantly lower for all measures of anxiety from the pre- to post- acupuncture assessments (p < . ). conclusion children who received acupuncture treatments had lower anxiety scores from pre- to post assessments, and compared to the wait-list group. acupuncture was tolerated and acceptable to patients and their families. o traditional chinese medicine health education on improving sub- health status: a systematic review ning liang, xue feng, jian-ping liu, hui-juan cao beijing university of chinese medicine, center for evidence-based chinese medicine, beijing, china correspondence: jian-ping liu (jianping_l@hotmail.com) bmc complementary and alternative medicine , (suppl ):o question sub-health status is an intermediate state between health and dis- ease, and could restore to health if handled well with relative risk factors (e.g. excessive pressure, unbalanced diet). this article was to summarize the current delivery ways of traditional chinese medicine (tcm) health education for sub-health status, and to explore the cor- relation between tcm health education and sub-health status. methods six electronic databases were searched from inception till au- gust. studies with control group including randomized or non- randomized controlled trials, cohort, case control, and cross-sectional studies were included.tcm education compared with no tcm educa- tion was included. co-intervention was allowed in both groups. the sub-health status was considered as primary outcome and health knowledge and behavior changes as secondary outcomes. results of the citations, full papers were screened and finally stud- ies were included. tcm health education was delivered in two ways: school courses and individualized clinician counseling. one study showed that compared to common health education alone, adding on tcm clinicians specific health education improved total sub-health sta- tus(p < . ), and specifically fatigue(p < . ), psychological symptoms(p < . ) and immunity (p = . ). a statistically signifi- cant association was found of female status (e.g. menstruation) and knowledge and behavior improvement (p = . ) between with or without receiving school-based tcm health education. conclusions based on limited number of evidence, there was positive correlaton between tcm health education and sub-health status or specific do- mains like female status or certain knowledge and behavior changes. future more studies were needed and the incorporation with e- education should be paid much more attention to. o a systematic review of the effects of meditation on empathy, compassion, and pro-social behavior christina m luberto , nina shinday , lisa philpotts , elyse park , gregory l fricchione , gloria yeh harvard medical school/massachusetts general hospital, boston, ma , united states; harvard medical school/beth israel deaconess medical center, boston, ma, united states correspondence: christina m luberto (cluberto@mgh.harvard.edu) bmc complementary and alternative medicine , (suppl ):o question empathy (i.e., understanding of others emotions), compassion (i.e., desire to relieve others suffering), and pro-social behaviors (i.e., be- haviors intended to help others) are necessary for societal well-being and improve individual health outcomes (e.g., psychological well- being, systemic inflammation). traditionally, one implicit goal of meditation practices is to increase empathy and compassion. the purpose of the current study is to systematically review the empirical literature on the effect of meditation-based interventions on em- pathy, compassion, and pro-social behaviors. methods a literature search was conducted in pubmed, medline, psycinfo, cinahl, embase, and cochrane databases from inception through april using the search terms: mind-body therapies, mindfulness, meditation, tai chi, yoga, mbsr, mbct, empathy, compassion, love, al- truism, sympathy, or kindness. randomized controlled trials in any population were included. bmc complementary and alternative medicine , (suppl ): page of results twenty-six studies met inclusion criteria (total n = , subjects). most studies were conducted among healthy adults (n = ) using compassion meditation (n = ) or combined mindfulness/compas- sion meditation (n = ), often - weeks in duration (n = ) and de- livered in a group format (n = ). most control groups were wait-list or no-treatment (n = ). outcome measures included self-reported emotions (e.g., composite scores, validated measures of empathy) and observed behavioral outcomes (e.g., real-world helping behavior, donations during computer games). most studies showed a low risk of bias. results of low-bias studies demonstrated significant improve- ments in observable pro-social outcomes following meditation train- ing. results for self-reported outcomes were encouraging, though less consistent. conclusions meditation is efficacious for improving pro-social outcomes. further research using more diverse samples, longer-term follow-up, and standardized interventions and outcome measures is warranted. o deficits in massage related adverse events case reporting and implications for the therapeutic massage and bodywork field: a systematic audit through mid- niki munk , arash zakeresfahani , trevor r foote , rick ralston , karen boulanger indiana university school of health and rehabilitation sciences, health sciences, indianapolis, in, united states; indiana university school of physical education, tourism, and management, kinesiology, indianapolis, in, united states; indiana school of medicine, ruth lilly medical library, indianapolis, in, united states; stanford university school of medicine, stanford, ca, united states correspondence: niki munk (nmunk@iu.edu) bmc complementary and alternative medicine , (suppl ):o introduction adverse event (ae) reporting is lacking in massage research. many case reports exist describing medical intervention for purported mas- sage related aes. the current study provides a rich description re- garding reporting thoroughness and implications of case reports documenting treatment for massage attributed aes. methods )systematic identification of published, peer-reviewed case reports for treatment of massage related aes following prisma recommen- dations, )audit development based on case report (care) guide- lines and ae reporting guidelines, )audit implementation, and )descriptive analysis of audit scores. results search identified articles; met study inclusion criteria. of the audit items assessed, articles included approximately % of the necessary guideline items. few audited case reports included client perspective ( %), race( %), and occupation/activities( %) or pa- tient consent to publish the report( %). on average, articles reported . (sd . ) of the possible ae causing descriptors. none included a description of massage provider training, scope-of-practice, or setting and most ( %) did not describe the massage provider at all. few ar- ticles included a description of the massage pressure ( %), num- ber( %), length( %), frequency( %), or duration( %). none reported an attempt to contact the massage provider for informa- tion. massage was the likely or absolute ae cause in % of cases but in % of those, massage was not the sole cause of the ae. thirty percent of articles included situations of unforeseen, under- lying, and/or coincidental conditions. various implications are discussed. conclusion most articles implicated massage for aes yet lacked enough detail to adequacy inform massage practice and education or massages role in these medically treated situations. o non-pharmacological multicomponent interventions as a method to treat dementia dominik Özbe, elmar gräßel, katharina luttenberger, anna pendergrass universitätsklinikum erlangen, erlangen, germany correspondence: dominik Özbe (dominik.oezbe@uk-erlangen.de) bmc complementary and alternative medicine , (suppl ):o background as there is no effective pharmacological treatment for dementia, it is profitable to focus on non-pharmacological interventions. our object- ive is to present the promising approach of non-pharmacological multicomponent therapies using the example of a german random- ized controlled trial (rct) and to give a systematic review of the international literature. methods in the german rct patients with primary degenerative dementia received either a highly standardized intervention consisting of motor stimulation, activities of daily living, and cognitive stimulation (maks) or treatment as usual. the systematic review was based on a search in medline, psycinfo, and psyndex. all articles published till august in english and german language were considered. results at months the maks group showed an improvement in overall de- mentia symptoms compared to no change in the control group (ad- justed mean difference (amd) = - . , % ci = - . to - . , p < . , cohen"s d = . ). the results at months (n = ) showed, that the maks group remained stable in cognitive function (amd = - . , % ci - . to - . , p < . , cohen"s d = . ) and adls (amd = . , % ci . to . , p < . , cohen"s d = . ), whereas the control group showed a significant deterioration. the literature review showed that the most common components are varieties of physical and cogni- tive stimulation. conclusion multicomponent interventions are able to stabilize and even improve dementia symptoms. the growing body of work in this field needs to be systematically assessed and evaluated. o acupuncture for patients with multiple sclerosis associated fatigue – a randomized controlled trial daniel pach , , judit bellmann-strobl , , yinhui chang , , laura pasura , bin liu , sven f jäger , ronny loerch , li jin , benno brinkhaus , miriam ortiz , thomas reinhold , stephanie roll , sylvia binting , katja icke , xuemin shi , friedemann paul , , , claudia m witt , institute for social medicine, epidemiology and health economics, charité – universitätsmedizin berlin, berlin, germany; institute for complementary and integrative medicine, university of zurich and university hospital zurich, zurich, switzerland; neurocure clinical research center, charité - universitätsmedizin berlin, berlin, germany; experimental and clinical research center, max delbrueck center for molecular medicine and charité - universitätsmedizin berlin, berlin, germany; first teaching hospital of tianjin university of traditional chinese medicine, tianjin, china; department of neurology with experimental neurology, charité - universitätsmedizin berlin, berlin, germany correspondence: daniel pach (daniel.pach@charite.de) bmc complementary and alternative medicine , (suppl ):o background fatigue influences daily activities of patients with multiple sclerosis (ms) and reduces their quality of life. most of clinical trials evaluating interventions for fatigue in ms have shown only minor benefits. objective we aimed to evaluate whether ) acupuncture or ) mindfulness- based stress reduction (mbsr) in addition to usual care are effective in reducing fatigue in ms patients compared to usual care alone. bmc complementary and alternative medicine , (suppl ): page of methods we performed a single-center, randomized, three-arm, controlled trial in a university study center specialized on ms. outpatients with ms and fatigue for at least months and an average score of ≥ on the fatigue severity scale (fss) were randomly allocated to three groups ( acupuncture, mbsr, and usual care). patients in the acupuncture group received treatments within weeks in addition to usual care, the mbsr group received weeks of mbsr treatment in addition to usual care, and the usual care group contin- ued any previous treatment. the primary outcome was the fatigue severity scale (fss) after weeks (values - , with higher values in- dicating more fatigue). because of recruitment difficulties recruitment for mbsr was stopped early and only acupuncture vs. usual care was analyzed in the primary analysis (ancova adjusted for baseline fss and gender). results the primary outcome fatigue (mean adjusted fss score after weeks) was . ( % ci [ . ; . ]) in the acupuncture group and . [ . ; . ]) in the usual care group (difference: . [ . ; . ], p = . ). conclusion acupuncture in addition to usual care was significantly superior to usual care alone. therefore acupuncture might be beneficial for ms patients with fatigue, particularly with regard to limited treatment options for these symptoms, but more research is needed. further outcomes will be presented at the conference. trial registration: clinicaltrials.gov identifier nct o osteopathic treatment in addition to medical standard therapy in patients with gastroesophageal reflux disease (gerd): a randomized controlled trial michaela rütz , andreas lynen , meike schömitz , maik vahle german academy of osteopathy, gauting, , germany; still academy, mühlheim, germany correspondence:michaela rütz (f.schwerla@german-afo.de) bmc complementary and alternative medicine , (suppl ):o question to evaluate the effectiveness of custom tailored osteopathic treat- ment in addition to medical standard therapy in patients suffering from gerd. methods three trained osteopaths conducted the study in their private prac- tices in germany. patients aged to years with a history of gerd were included in the study. by means of external randomization patients were allocated to the intervention group and to the control group. in the intervention group osteopathic treatments at intervals of two weeks were performed with a follow- up after weeks. all participants were allowed to continue with their individual pharmacological therapy on demand (usual care). pri- mary outcome parameter was frequency and severity of reflux symp- toms (reflux disease questionnaire, rdq). as secondary outcome parameters quality of life in reflux and dyspepsia was assessed by a disease-specific questionnaire (qolrad). results the inter-group comparison of changes revealed relevant improve- ments in support of the osteopathic treatment for the main outcome parameter symptom frequency and severity (rdq overall score: be- tween group difference of means . ; % ci: to . ; p < . ). fre- quency of symptoms decreased by % and severity by %. equally quality of life improved in favor of the osteopathic group (qolrad overall score: between group difference of means . ; % ci: . to ; p < . ). conclusion four osteopathic treatments over a period of six weeks led to statisti- cally significant and clinically relevant positive changes of reflux symptoms and quality of life in reflux and dyspepsia in patients suf- fering from gerd. german clinical register: drks o an integrative curcumin-mesalamine therapy for remission induction in mild-moderate active ulcerative colitis: an international, multi-center, randomized, double-blind, placebo- controlled trial nir salomon , alon lang , adi lahat , uri kopylov , shomron ben-horin , ofir har-noi , benjamin avidan , rami elyakim , dorit gamus , siew ng , jessica chang , justin wu , john kaimiklotis sheba medical center, tel aviv, israel; gastroenterology, chinese university of hong kong, hong kong, hong kong; cyprus ibd center, ibd, nicossia, cyprus correspondence: nir salomon (nironsl@gmail.com) bmc complementary and alternative medicine , (suppl ):o background and aims curcumin, a herbal-compound, may be efficacious in the treatment of ulcerative colitis (uc). in this study we investigated the efficacy of curcumin add-on therapy for inducing remission in patients with ac- tive mild-to moderate uc. methods in this multi-center randomized, placebo-controlled double-blind study, patients with active mild-moderate uc (defined by score of to in the simple clinical colitis activity index (sccai)) were allo- cated to receive gr daily of curcumin or placebo for one month on top of optimized (oral + topical) asa treatment. clinical index (sccai), endoscopic index (partial mayo) and serological parameters were determined at entry and conclusion of study period. results in the intention-to-treat analysis, / ( %) patients receiving cur- cumin and / patients receiving placebo achieved clinical remis- sion (sccai ≤ ) at week (p = . , or . , ci . to ). clinical response (reduction of ≥ points in sccai) was achieved in / pa- tients receiving curcumin and in / patients receiving placebo (p < . , or . , ci . to . ). endoscopic remission (partial mayo score ≤ ) was observed in / ( %) of patients receiving curcumin and in / ( %) of the patients receiving placebo (p = . , or . , ci . to ). the mean change in partial mayo score was + , ± . for the placebo arm compared to - . ± . in the cur- cumin arm (p = . ). no serious adverse events were recorded. conclusion curcumin as add-on therapy was superior to placebo for inducing clinical and endoscopic remission in mild-to-moderate active uc with no apparent adverse effects. curcumin may be a safe and promising agent in the treatment of inflammatory bowel diseases. o effects of yoga versus the low-fodmap diet on gastrointestinal symptoms and the microbiota in patients with irritable bowel syndrome – a randomized controlled trial dania schumann , ludovica buttó , , jost langhorst , gustav dobos , dirk haller , , holger cramer , department of internal and integrative medicine, kliniken essen-mitte, faculty of medicine, university of duisburg-essen, essen, germany; division of gastrointestinal and liver disease, case western reserve university school of medicine, cleveland, oh, united states; case digestive health research institute and departments of medicine, case western university school of medicine, cleveland, oh, united states; ziel - institute for food & health, technical university of munich, freising, germany; nutrition and immunology, technical university of munich, weihenstephan, germany; australian research centre in complementary and integrative medicine (arccim), faculty of health, university of technology sydney, sydney, australia correspondence: dania schumann (d.schumann@kliniken-essen- mitte.de) bmc complementary and alternative medicine , (suppl ):o purpose to examine the effect of a yoga intervention versus a low-fodmap diet (lfd) on irritable bowel syndrome (ibs), as well as to explore po- tential changes in the gut microbiota. bmc complementary and alternative medicine , (suppl ): page of methods patients with ibs undertook a single-blind, randomized controlled trial involving a yoga intervention or lfd for weeks. changes in gastrointestinal symptoms (primary outcome ibs-sss), quality of life (ibs-qol, sf- ) and perceived stress (cpsss, psq) were examined at weeks and . s rna analysis was performed after weeks to investigate the microbiota. results there was no significant difference between the groups after weeks in the ibs-sss (- . ; %ci = - . , . ; p = . ), or weeks (- . ; %ci = - . , . ; p = . ). explorative within group comparison showed significant effects for yoga and lfd at weeks and weeks (all p < . ). comparable within group ef- fects occurred for the other outcomes. significant changes in the composition of the gut bacteria could be seen between the groups after weeks (p = . , corr. p = . ) with a decrease in certain species after the fodmap intervention. conclusions this study found that both yoga and lfd group had a signifi- cant reduction in gastrointestinal symptoms and an increase in the quality of life, but seemed to act though different path- ways. the fodmap diet might unfold its effects through a change in the gut bacteria composition while yoga might act through the parasympathetic nervous system. more research is warranted on the underlying mechanism of both interventions and the potential benefit of their synergetic use, its effects and its safety. o acupuncture to improve live birth rates for women undergoing ivf: findings from a randomized controlled trial caroline smith , sheryl de lacey , michael chapman , julie ratcliffe , neil johnson , jane lyttleton , clare boothroyd , paul fahey western sydney university, nicm, penrith, australia; flinders university, bedford park, australia; university of new south wales, sydney, australia; university of auckland, auckland, new zealand; ivf med, brisbane, australia; western sydney university, school of science and health, campbelltown, australia correspondence: caroline smith (caroline.smith@westernsydney.edu.au) bmc complementary and alternative medicine , (suppl ):o the evidence of acupuncture as an adjunct to ivf is conflicting. the aim of this study was to determine the efficacy of a short course of acupuncture compared with a non-invasive sham control for women undergoing a fresh ivf cycle on clinical outcomes. methods: a randomized controlled trial included women aged less than years and undergoing a fresh ivf or icsi cycle was con- ducted at ivf units in australia and new zealand. at randomization there was stratification by number of previous embryo transfers, age of the women and ivf clinic site. treatment was administered be- tween days to of the stimulated cycle and two treatments were administered on the day of embryo transfer. participants, outcomes assessors and the analyst were blind to group allocation, and acu- puncturists were not blinded. the primary study outcome was live birth. secondary outcomes included clinical pregnancy, miscarriage prior to weeks, quality of life, and infertility self-efficacy. results: women were randomly allocated to acupuncture (n = ) or sham acupuncture (n = ). fifty one women were excluded due to post randomisation exclusions or women withdrew their con- sent, women had a cancelled cycle e.g. no oocytes collected, no surviving embryo, clinical decision to freeze all embryos. women proceeded to embryo transfer (acupuncture n = , sham acupunc- ture n = ). the live birth rate was . % of those having an em- bryo transfer in the acupuncture group and . % of those in the sham acupuncture control group (relative risk, . , % confidence interval . to . ). conclusion: there was no evidence of a difference in the live birth rate for women undergoing embryo transfer for women receiving acupuncture or non-invasive sham acupuncture. o effects of a mindfulness training on perceived stress, self- compassion and empathy of primary care physicians: a quantitative and qualitative analysis bram tjaden , marja van vliet , herman van wietmarschen , miek jong aandachtigedokters.nl, zeist, gv, netherlands; louis bolk instituut, driebergen, netherlands correspondence: miek jong (m.jong@louisbolk.nl) bmc complementary and alternative medicine , (suppl ):o background primary care physicians are subjected to high administrative de- mands and a high workload leading to a large incidence of burnout. mindfulness training has been found to improve stress resilience in medical students and physicians. this study reports on the effects of an week mindfulness training on self-compassion, empathy and perceived stress in primary care physicians. methods a mixed quantitative and qualitative methodology was chosen. the enrolled primary care physicians completed questionnaires on per- ceived stress (pss), self-compassion (neff), self-reflection (groningen reflective ability scale) at baseline, months and months. a phe- nomenological qualitative content analysis was conducted on semi-structured interviews months after the training to evaluate: in which manner the mindfulness training changed the way of looking at yourself, looking at your environment and looking at your patient. results first analysis of data from participating primary care physicians in- dicated a significant reduction in perceived stress (p < , ), im- provement in self-compassion (p < , ) and an improvement in self-reflection (p = , ) after the mindfulness training compared to before the training. qualitative analysis revealed the themes aware- ness, acceptance, peace, openness, and integration in daily life sev- eral, related to changes in self-reflection and changes in perceiving your environment. additionally, "connection with the patient" was re- vealed as a strong theme, indicating a better understanding of the patient and an improved ability to regard the patient as a whole. conclusions mindfulness training is an effective approach for fostering compas- sion and self-reflection in primary care physicians, in addition to im- provement of stress-resilience. o cancer therapy with mistletoe extracts. short overview of year experiences and recent clinical results wilfried tröger (troeger@crdt.de) verein für krebsforschung e.v., medial science, arlesheim, switzerland bmc complementary and alternative medicine , (suppl ):o introduction cancer therapy with mistletoe extracts has been proposed by rudolf steiner years ago in . the first preparation “iscador” should “replace the knife of the surgeon” and be used in all types of cancer. the first cases already showed less morbidity of the patients and a better quality of life, as well as a surprisingly long survival time. in the following, a short overview and recent results of randomized studies are shown. methods to find out the mode of action, in vitro research has been done since the early sixties. the first clinical trials were retrospective studies comparing with a historical population, case series prospective or non-randomized clinical trials. in parallel many ex vivo/in vitro - stud- ies have been done, because of the multiple immunomodulating ac- tivities of mistletoe. end of the seventies the first prospective randomized clinical trials were published. results some constituents of mistletoe extract are cytotoxic. mistletoe lectins induce apoptosis and viscotoxins cause necrosis in cancer cells. sur- prisingly healthy human lymphocytes are not affected in the same way. in contrary, many of their subtypes are stimulated by mistletoe bmc complementary and alternative medicine , (suppl ): page of lectins (t- and b-cells) or oligosaccharides like rhamnogalactouro- nanes (nk-cells) in in vitro assays. mistletoe may protect healthy pbmc from the dna-damaging effects of chemotherapy. recent re- sults even showed a synergistic effect of mistletoe and chemother- apy on cancer cells in vitro, testing different tumor cells and their respective standard chemotherapy regimen. there are about clinical trials with iscador published since . the examined tumour entities were in breast, colon, lung, skin, cer- vix, pancreas, stomach, bladder and others. several reviews showed strong effects regarding morbidity and quality of life, and moderate effects on tumour response and survival. none of the studies showed negative effects or reported from serious adverse events. recent gcp-studies showed a benefit in quality of life as well as a pro- longation of the survival time. a randomized early breast cancer study using iscador in parallel to caf showed the improvement of quality of life and neutropenia. a study with patients with locally advanced or metastatic carcinoma ot the pancreas showed a median survival of the iscador-patients of , months and , months for the control patients, who received no therapy anymore (hr = , ; p < , ). conclusion mistletoe extracts decrease the morbidity of the patients and in- crease the quality of life as well as the survival time of cancer pa- tients. the therapy is safe. o research in complementary and alternative medicine in finland: a literature review pia vuolanto , paulina aarva , minna sorsa , kaija helin university of tampere, faculty of social sciences, tampere, finland; Åbo akademi university, Åbo, finland correspondence: pia vuolanto (pia.vuolanto@uta.fi) bmc complementary and alternative medicine , (suppl ):o the situation and prerequisites of research in complementary and alter- native medicine (cam) vary between countries across the world. some countries have well established cam research centers and in most countries the numbers of cam publications have grown steadily during the last couple of decades. finland does not have a cam research cen- ter and its prerequisites for cam research have been very scarce. the regulation of cam is far from being solved. public discussion on cam often ends up in controversies characterized by strong juxtapositions. the presentation focuses on finnish cam research in the long-term perspective by analysing cam research articles and phd theses from the s until . the analysis shows the slow growth of the number of publications and the heterogeneity of settings for cam re- search. however, certain trends in finnish cam research could be identified. the most important focus of research has been on cam use and the experiences of cam users. also the attitudes of health care personnel in finland have been studied, as well as the history of different traditional healing practices. surprisingly little research con- ducted on the efficacy of cam treatments was found which might be due to the lack and scarcity of research resources. we argue that due to the absence of national cam policy including research policy and the dominance of research on cam usage, the category of cam and its central concepts have not been analysed thoroughly. this might have an impact on the strong controversies in public discus- sions about cam treatments in the finnish context. o the potential of video analysis for recognising ergotropic and trophotropic phases of patients during music and occupational therapy claudia wenzel, iris zoderer, patricia pammer, patrick simon, gerhard tucek department of health sciences, imc university of applied sciences/ austria, krems an der donau, , austria correspondence: claudia wenzel (claudia.wenzel@fh-krems.ac.at) bmc complementary and alternative medicine , (suppl ):o purpose as part of a mixed-methods study focusing on the optimum chrono- biological phase for therapeutic processes, the main objective of this qualitative part of the study was to identify ergotropic and tropho- tropic phases of patients participating at music or occupational ther- apies with the help of systematic video analysis. methods data collection included videographies (n = ) of music and occupa- tional therapies as well as qualitative expert interviews (n = ). grounded theory was used both as a methodology and as a method of analysis (coding). the computer software atlas.ti (vers. . ) was used for both interview and video analysis. results the systematic interview and video analysis showed that researchers and professionals can differentiate between ergotropic and tropho- tropic phases in the course of music or occupational therapies, but there are no unique categories referring only to ergotropic or to tro- photropic phases. posture & motor function, followed by verbal, ac- tion & activity, concentration facial expression and interaction were the most frequently categories. conclusions as there are no unique categories for either ergotropic or tro- photropic phases, the context of the therapy must be taken into account as well as parameters like the subjective motiv- ation of the patient. the empirical results can be considered as the foundation for the development of an observance tool for identifying ergotropic or throphotropic phases of patients with the objective to find the right chronobiological phase for clin- ical therapies. o the use of complementary and alternative methods (cam) among swedish cancer patients kathrin wode , roger henriksson , , lena sharp , , anna stoltenberg , johanna hök nordberg , regional cancer center stockholm gotland, stockholm, sweden; north sweden university hospital, umeå, sweden; karolinska university hospital, stockholm, , sweden correspondence: johanna hök nordberg (johanna.hok@ki.se) bmc complementary and alternative medicine , (suppl ):o although swedish conventional health care providers rarely discuss, recommend or prescribe cam, research indicates use comparable to other high-income countries. the aim of this study was to describe patterns of cam use among swedish cancer patients. in this cross-sectional study, questionnaires were distributed con- secutively to cancer patients at stockholm’s university hospital’s out-patient units. response rate was % (n = ). answers were an- alyzed using descriptive statistics and content analysis. use of cam over lifetime was reported by %; after cancer diagnosis by % and new cam use since cancer diagnosis by %. females, age - and high education predicted cam use. top methods were vitamins and minerals, natural prod- ucts and relaxation. main reasons for use were improvement of physical, emotional and general wellbeing. side-effects were few and mild; average monthly costs < €; satisfaction was high. one third discussed their cam use with cancer care providers; % thought that the oncology team didn’t need to discuss cam. over % thought that cam therapies should be offered in cancer care. swedish cancer patients use cam despite limited access and in- formation, are highly satisfied and experience specific benefits. in general, cam use seems to be a conscious choice compatible with daily life and reflects patients’ needs to contribute to their wellbeing. the lacking involvement of conventional providers in patients cam use diverge with patients needs and might be a risk for patient safety. if cancer care has the ambition to be per- son centered, patients preferences about cam need to be addressed. bmc complementary and alternative medicine , (suppl ): page of o dengzhan shengmai capsule as adjunctive treatment for ischemic stroke: a systematic review and meta-analysis of randomized clinical trials yang xiao-ying, li-qiong wang, jin-gen li, ning liang, ying wang, jian- ping liu beijing university of chinese medicine, centre for evidence-based chinese medicine, beijing, china correspondence: yang xiao-ying (yuki-ying@bucm.edu.cn) bmc complementary and alternative medicine , (suppl ):o objective the review aimed to assess the effectiveness and safety of dengzhan shengmai (dzsm) capsule for ischemic stroke. methods we searched six electronic databases for randomized controlled trials of dzsm capsule for people with ischemic stroke. co-intervention was allowed if applied in all arms. risk ratio and mean difference with a % confidence interval (ci) were used as effect measures by using revman . . results we identified rcts involving participants, and all trials were conducted in china. majority of the included trials were of high risk of bias in methodological quality. for acute ischemic stroke, adding dzsm capsule to conventional therapy achieved higher barthel index scores (md . , % ci . to . ), lower neurological function deficit scores (md - . , % ci - . to - . ) and lower recurrence rate (rr . , % ci . , . ). for patients in their convalescence (or convalescence and sequelae stage) of ischemic stroke, dzsm cap- sule was superior in improving quality of life (md . , % ci . to . ) and recurrence (rr . , % ci . to . ) compared to placebo. no trials reported the serious adverse events. conclusion dzsm capsule appears to improve neurological function, quality of life and reduce recurrence rate based on conventional therapy for is- chemic stroke and seems generally safe. however, the findings of benefit are inconclusive due to generally weak evidence, and further large, rigorous trials are still warranted. clinical care o medical cannabis access in canada: new opportunities and challenges lynda balneaves , rielle capler college of nursing, university of manitoba, winnipeg, r t n , canada; interdisciplinary studies graduate program, university of british columbia, vancouver, canada correspondence: lynda balneaves (lynda.balneaves@umanitoba.ca) bmc complementary and alternative medicine , (suppl ):o introduction since , canadians have had access to medical cannabis. in , new regulations and a production system were instated to maintain reasonable access to medical cannabis while addressing safety issues. recent court rulings, as well as a movement towards legalization, have further shifted how medical cannabis is conceptualized and of- fered in canada. the purpose of this review is to examine the oppor- tunities and challenges facing medical cannabis access in canada. methods this review will reflect on the current literature and regulation history in canada regarding how medical cannabis has been offered and produced, as well as research that has explored the access experi- ences of patients utilizing medical cannabis. preliminary findings from a survey of medical cannabis users will be considered in the context of new legislation. findings qualitative research has revealed canadians have struggled to access medical cannabis, with gatekeeping, social stigma, and poor quality being reported as challenges. survey research shows access remains problematic for % of patients, with cost, product availability, and wait-times posing significant challenges. to address these issues, new legislation has expanded the types of product available as well as legalized some forms of self-production. a recent task force on legalization has also been offered as a way to increase access to cannabis. conclusion while legalization of cannabis may improve access, it poses new challenges with regards to how medical cannabis use is conceptual- ized, researched and made available to canadians. thoughtful dia- logue about these challenges is needed prior to future legislation changes and program development. o possibility of cure and prevention of radiation therapy injury chiara bocci, marta guffi, marina paolini, ilaria meaglia, patrizia porcu, giovanni b ivaldi ics maugeri, radiotherapy, pavia, italy correspondence: chiara bocci (chiara.bocci@fsm.it) bmc complementary and alternative medicine , (suppl ):o radiotherapy treats many types of cancer effectively. but like other treatments, it often causes side effects. these are classified as acute (occurring within few weeks after therapy), intermediate or late (oc- curring months or years after the therapy) and can have a devastat- ing effect on the quality of life of cancer patients and survivors. due to the inadequacy of most of the radio-protectors in controlling the side effects of conventional cancer therapy the complementary and alternative medicines have attracted the view of researchers and medical practitioners more recently. the use of compounds which can selectively protect normal tissues against radiation injury is of immense interest because beside pro- tecting the normal tissue, could also permits use of higher doses of radiation to obtain better cancer control and possible cure. curcu- min, for example, has been reported to protect various study systems against the deleterious effects induced by ionizing radiation and also to enhance the effect of radiation. oncology acupuncture has become a new and promising field of re- search. recent trials made efforts in studying hot flashes in breast cancer patients under hormonal therapy, xerostomia induced by radiotherapy in head and neck cancer, and fatigue and insomnia. dietary modification such as caloric restriction has been shown to decrease tumor initiation and progression and could be used during radiotherapy course as a novel therapeutic intervention to enhance cytotoxic therapies and reduce the cytotoxic effects on normal tissue. preliminary data support the efficacy of homoeopathic topical calen- dula for prophylaxis and treatment of acute dermatitis during radiotherapy. o type d personality, anxiety and depression – does the presence of type diabetes mellitus make a difference in coronary and hypertensive patients? simona dragan, petru bucuras, ana m pah, marius badalica-petrescu, florina buleu, gheorghe hogea-stoichescu, ruxandra christodorescu university of medicine and pharmacy victor babes, cardiology, timisoara, romania correspondence: simona dragan (simona.dragan@umft.ro) bmc complementary and alternative medicine , (suppl ):o introduction cardiovascular morbidity and mortality rates are linked to certain personality traits associated with depression and anxiety. type d be- havior is characterized by the shared inclination to experience nega- tive emotions and to inhibit them while avoiding social contact. in bmc complementary and alternative medicine , (suppl ): page of this study, we assessed the impact of the presence of type diabetes mellitus (t dm) on quantified anxiety and depression scores and type d personality in hypertensive and coronary patients. material and methods the study was carried out on patients with coronary artery dis- ease (cad; mean age . years) and patients with hypertension (ht; mean age . years). the hospital-based item anxiety and depression scale (had) and the duke anxiety-depression scale (duke) were used for standardized self-reported measurements for anxiety and depression scores. type d personality was assessed using the ds- scale, containing item negative affectivity (na) and social inhibition (si) subscales. correlations were made using the chi test and the non-parametric mann-whitney and kruskal-wallis tests. results t dm was present in patients with cad and patients with ht. type d personality (na added to si scores ≥ ) was found in % patients with cad and , % with ht. anxiety scores (had a) were significantly higher in cad patients with t dm than in non-diabetics (p = . ) and correlated with ldl levels (r = . , p = . ). ds- na scores were significantly higher in ht patients with t dm than in non-diabetics (p = . ). type d personality was present to a signifi- cant extent in ht patients with t dm compared to non-diabetics (p = . ). duke scale scores correlated significantly with hdl levels (r = . , p < . ) and arterial diastolic pressure (adp) levels for both cad (r = . , p = . ) and ht (r = . , p = . ) patients. higher duke scores were obtained in cad compared to ht patients, regardless of t dm diagnosis (mann-whitney test, p = . ). patients with stage ht had higher duke scores than those with stage , thus correlating with disease progression. conclusion this study showed that type d personality and anxiety are closely linked to diabetes in coronary and hypertensive patients. based on these findings, we consider that personalized psychotherapeutic in- terventions are extremely important for disease progression and should be part of complex cardiovascular prevention programs. o an integrative approach with acupuncture for post-traumatic stress disorder (ptsd): a case report lan kao, yumin cho department of general internal medicine, center for east-west medicine, university of california los angeles (ucla), los angeles, ca , usa correspondence: yumin cho (cho.yumin@gmail.com) bmc complementary and alternative medicine , (suppl ):o background: this study is an assessment of the acupuncture utility for treatment of post traumatic stress disorder (ptsd), which is char- acterized by “intrusive thoughts, nightmares, flashbacks of past trau- matic events, avoidance of reminders of trauma, hypervigilance, sleep disturbance, all of which lead to considerable social, interper- sonal ” and physiological dysfunctions. this case involves a -year old female veteran diagnosed with ptsd and mild traumatic brain in- jury, due to military combat and sexual trauma, after her de- ployment to afghanistan. she presented with depression, anxiety, sleep disturbance, headaches, chest pain, lower back pain, bladder pain, and constipation. methods: patient completed a questionnaire pre and post acu- puncture to assess the severity of symptoms. acupuncture sessions were minutes, administered once a week for weeks in a group setting, using sishencong, gb , du / / / / / , ub . other interventions included qigong, cognitive processing therapy, emotion regulation, distress tolerance, biofeedback, mindfulness, art therapy, and equine therapy. results: anxiety level reduced from / to / . depression re- duced from / to / . sleep duration and quality improved from - hours a night to - hours of sustained sleep without medi- cation, and sleep apnea subsided. headaches diminished and medi- cation stopped. back pain improved from - / severity to / and medication stopped by the third treatment. bladder pain eased and medication usage ceased. bowel movement became regular. conclusions: this case demonstrates the potential utility of acupunc- ture within an integrative setting as an adjunct intervention for the treatment of ptsd. written informed consent was obtained from the patient to publish this data. . sareen, j, stein, m b, hermann, r. uptodate. post traumatic stress disorder in adults: epi- demiology, pathophysiology, clinical manifes- tations, course, assessment, and diagnosis. avail- able at https:// www.uptodate.com. december , . o quality of life and fatigue in breast and gynecologic cancer patients during chemotherapy supported by a complex nurse-led cam intervention – results of a randomized-controlled trial nadja klafke , cornelia mahler , cornelia von hagens , lorenz uhlmann , martina bentner , andreas schneeweiss , andreas mueller , joachim szecsenyi , stefanie joos university hospital heidelberg, department of general practice and health services research, heidelberg, germany; university women's hospital heidelberg, department of gynecologic endocrinology and reproductive medicine, division naturopathy and integrative medicine, heidelberg, germany; university hospital heidelberg, institute of medical biometry and informatics, heidelberg, germany; national center for tumor diseases, gynecologic oncology, heidelberg, germany; community hospital karlsruhe, women's clinic, karlsruhe, germany correspondence: nadja klafke (nadja.klafke@med.uni-heidelberg.de) bmc complementary and alternative medicine , (suppl ):o question conventional cancer treatment is associated with patients' impaired physical and emotional functioning, affecting quality of life outcomes. fatigue belongs to one of its most distressing symptoms. the majority of cancer patients complement conventional cancer treatment with complementary and alternative medicine (cams), however, more evi- dence to encourage such supportive treatments is urgently needed. the primary objective of the congo (complementary nursing in gy- necologic oncology)-study was to investigate if a complex cam intervention, consisting of a cam nursing package, resource-oriented counseling, and cam information materials, improves health-related quality of life (hrqol) and associated patient-oriented outcomes in breast and gynecologic cancer patients receiving chemotherapy. as part of the hrqol analyses, we aimed to analyze if and how pa- tients' fatigue levels benefited from the cam interventions. methods from july until april , randomized controlled trial data of patients treated for localized or metastatic cancers were col- lected in the national center of tumor diseases (nct) heidelberg and the community hospital karlsruhe (skk). the intervention group patients received routine care plus the cam intervention package during chemotherapy treatment (cht); control group patients re- ceived routine supportive care only. the primary endpoint hrqol was assessed with the eortc-qlq- c ; the secondary endpoint fatigue was assessed with the -item scale of the functional assessment of cancer therapy-fatigue (facit-f). both endpoints were measured at t – baseline, t – mid- line of cht, t – end of cht, and follow-up t – months after cht. in addition the hrqol was assessed weekly in the patient diary. results databank cleansing of all time points was finalized in december . currently, the data of the primary and secondary outcomes are being examined. data are analyzed with linear mixed models includ- ing intervention/control group, the interaction of treatment and time, fatigue/hrqol baseline scores, and the strata center and stage of cancer as fixed effects. the models will also consider a random inter- cept to take account of the correlation between observations of the same patients assuming an unstructured correlation structure. complete results of these analyses can be presented in may at the ecim&iccmr. https://www.uptodate.com/ https://www.uptodate.com/ bmc complementary and alternative medicine , (suppl ): page of conclusions the congo-study evaluates if cancer patients' supportive therapy can be improved by a cam intervention delivered by trained oncol- ogy nurses. due to patients' increasing uptake of holistic practices and products, it is essential that healthcare professionals know how to respond to patients' needs, and that evidence-based cam pro- grams are further integrated into oncology healthcare services. o acupuncture in post-date pregnancy isabella neri (isabella.neri@unimore.it) ob-gyn, university of modena, modena, , italy bmc complementary and alternative medicine , (suppl ):o question pharmacological labor induction is obtained through intracervical/va- ginal prostaglandins and/or oxytocin infusion; however, the use of these agents produces fetal and maternal side effects. traditional chinese medicine advocates the use of acupuncture to soften the cervix and induce uterine contractions. the aim of the present study is to investigate the effect of acupuncture to induce labor onset. acu- puncture was applied in post-date pregnancies and the primary out- come was the rate of women submitted to labor induction for prolonged pregnancy at week . methods after informed consent, undelivered women after gesta- tional age were considered eligible for the study and women treated with acupuncture and in the observation group. the acu- puncture sessions were planned up to a maximum of sessions up to st week plus days. at week a pharmacological induction of labor was planned. results acupuncture and observation groups showed a similar rate of nullipar- ous women ( . % vs . %) pre-labor rupture of membranes ( . % versus . %), gestational age to hospitalization ( . ± . versus . ± . days), blood loss ( . ± . versus . ± . ml),) rate of caesarean section ( . % versus . %) and birth weight ( . ± . versus . ± gr).the rate of operative delivery is lower in women treated with acupuncture in respect to control ( . % versus . %). the total rate of labor induction significantly differed be- tween acupuncture and control groups ( . % versus . %). in par- ticular the labour induction indicated for "prolonged pregnancy" was lower in women submitted to acupuncture( / versus / ). conclusion the present study demonstrated that acupuncture applied a term of delivery seems effective in reducing the rate of labor induction per- formed for prolonged pregnancy at weeks. o complementary and integrative medicine in nursing homes - results of a prospective, exploratory, comparative, two-armed cohort study from the residents' perspective miriam ortiz, katharina schnabel, michael teut, gabriele rotter, sylvia binting, margit cree, fabian lotz, ralf suhr, benno brinkhaus institute for social medicine, epidemiology and health economics, charité universitätsmedizin – berlin, berlin, , germany correspondence: miriam ortiz (miriam.oritz@charite.de) bmc complementary and alternative medicine , (suppl ):o question "kneipp therapy" (kt) is a form of complementary and integrative medicine (cim) that includes a combination of hydrotherapy, herbal medicine, mind-body medicine, physical activities and healthy nutri- tion. since nursing homes (nh) in germany started to integrate kt in daily care. the aim was to investigate the long-term impact of kt on nh residents. methods we conducted a prospective, exploratory, two-armed cohort study to compare nh with (kt group) and without kt (but with routine health preventive interventions (hpi); control group) over months. each nh with kt was matched to a control nh. outcomes included fre- quency of received kt resp. hpi, a quality of life (qualidem) and a multidimensional global impression scale (nosger). results we included n = residents from nh (kt group) and n = resi- dents from nh (control group). % of the residents were female (bmi . ± . ; age: . ± . years). there were no major differ- ences between the groups in the qualidem items. kt group resi- dents had significantly better values for the nosger dimension "challenging behaviour" (p = . ) after months and "memory cap- acities" after months (p = . ). in a post hoc sensitivity analysis residents of both groups who had received more than times kt resp. hpi per month showed significantly better values in social and well-being items of the qualidem and nosger. conclusions the study showed only few significant differences between both nh groups in favour for kt. the frequency of kt or hpi applications seems to influence social aspects and well-being. trial registration: drks-id: drks o integrative oncology in the region of tuscany: a successful integration elio rossi , sonia baccetti , fabio firenzuoli , maria v. monechi , mariella di stefano , gianni amunni homeopatic clinic asl tuscany north west lucca, tuscan network for integrative medicine, lucca, , italy; tuscan network of integrative medicine, florence, , italy; ispo, tuscan tumor institute, florence, , italy correspondence: elio rossi (e.rossi@mednat.it) bmc complementary and alternative medicine , (suppl ):o purpose to describe the process of integration of complementary medicine (cm) in the network of cancer departments of tuscan public health- care which is ongoing since . methods in the tuscan tumor institute and the tuscan network of inte- grative medicine (tnim) established a working group composed of experts in cm and oncologists to review the literature on the use of cm in cancer care. later in the tnim participated in the euro- pean partnership for action against cancer-epaac ( th framework programme), with the purpose of collecting evidence on the use of cm in cancer and mapping the european centers offering integrative oncology. results in a resolution of the tuscan regional government ratified to develop the use of some cm as treatment of cancer-related symptoms, and side effects of conventional cancer therapy (acu- puncture for nausea and post-chemotherapy and post-surgery vomiting, pain, hot flushes of iatrogenic menopause, xerostomia; homeopathy for hot flushes of iatrogenic menopause and the side-effects of radiotherapy; herbal medicine for anxiety, depres- sion, cancer-related fatigue, mucositis, nausea, vomiting and pain). a commission of cm experts and oncologists will define how to apply this resolution. the role of cm in cancer care has been re- cently strengthened within the reform of public health service ongoing in tuscany. conclusions the integration of evidence-based complementary treatments as a part of a comprehensive cancer care network allows to respond safely and effectively to the demand coming from cancer patients and combine safety and equity of access in public health systems. bmc complementary and alternative medicine , (suppl ): page of o increasing the survival of pancreatic cancers by chinese herbal medicine wendy wong, bingzhong chen, justin wu chinese university of hong kong, hong kong institute of integrative medicine, school of chinese medicine, hong kong, hong kong correspondence: wendy wong (wendy.wong@cuhk.edu.hk) bmc complementary and alternative medicine , (suppl ):o with advance diagnosis of health care system, pancreatic cancer has the lowest overall -years overall survival among all other cancers. systematic review or meta-analysis have concluded that the radio- therapy or chemotherapy are least effective. chinese herbal medicine (chm) is being commonly used among patients for cancer treat- ments. the concurrent use of chm for cancer treatment remain con- troversial since herbs were found to be interfering with the efficacy of chemotherapy or leading to potential associated toxicities. in this study, we proposed a retrospective case series study to inves- tigate the survival gain for pancreatic cancer patients who had differ- ent treatment regimens across their patients journeys. with hong kong the best location for bridging both chinese and conventional medicine, the outcomes will be able to advance global interdisplinary medical industry for recommendation. this study aims at identifying the benefits and safety of chm for cancer patients in terms of sur- vival, safety, adverse effect, drug-related symptoms. with the global trend of integrative medicine, this study could facilitate inter- professional communication for improving the clinical management of pancreatic cancer patients in chinese. methods a retrospective case series was conducted on patients diagnosed with pancreatic cancer from to who consulted for chinese medicine practitioner for chm treatment at central of hong kong. pri- mary outcome was the overall survival after the diagnosis of cancer. results with mean age of (range of - ), patients had only taken only chm and refusing surgery, chemo- or radiotherapies. all other patients had taken in parallel of chm and conventional treatment of any combination of sugery, radio- or chemotherapy. the range of survival was months to years with mean of . months. the me- dian of survival was . months. more than % patients can sus- tain the -year survival. conclusion these illustrated a superior clinical outcomes than solely intake of conventional medications. the specific herbs in playing of the role of prolonging survival of pancreatic cancer should be investigated for wider application. this will help in identifying benefits and safety of chm in pancreatic cancer patients. the results will help guide strat- egies to improve patient-centered actions relating to pancreatic can- cer treatment and survivorship. education o graduate masters of science degree program in complementary and integrative medicine: opportunity to inform, cultivate and develop future healthcare leaders hakima amri, aviad haramati, lucy kotlyanskaya biochemistry and cellular and molecular biology, georgetown university medical center, washington, dc , united states correspondence: hakima amri (amrih@georgetown.edu) bmc complementary and alternative medicine , (suppl ):o offering integrative medicine (im) content, as a course of study prior to entering medical school or other health professions, can enhance a students awareness about values relevant to their future career and practice. in this presentation, we intend to describe the curricu- lum for a unique masters degree program, now in its th year, in the integrative biomedical sciences at georgetown university. the program is designed to be completed in months. the curricu- lum includes three tracks: science-based courses: such as biochemis- try, physiology, pharmacology, cim-based courses such as survey of cam disciplines addressing traditional medical systems (tcm, ayur- veda, unani, naturopathy, etc.), physiology of mind-body medicine, cam in pathophysiological states, nutrition, botanicals and supple- ments, and courses aimed at skills to assess evidence, such as evi- dence-based medicine, critical reading, biostatistics, as well as series of elective courses. in addition, students are required to participate in an -week practicum during the summer, in which they are immersed in some aspect of integrative medicine (from bench lab to clinic or government office). we plan to share experiences from our educational model where our graduates contributed to and led a number of initiatives, that im- pacted their schools and careers. thus, emphasizing the importance of teaching cim and how it promotes inter-professional education, creativity, and leadership skills. over the years, we have also found that our graduates go on to demonstrate other desirable skills such as: ) creative communication skills about im; ) community-building, ) assuming leadership roles, ) developing networking skills, and ) fostering inter-professional collaborations. o attitudes and beliefs about evidence-based and integrative medicine within the chinese medicine profession belinda anderson , roni evans , ben kligler , paul marantz pacific college of oriental medicine; albert einstein college of medicine, new york, ny , united states; university of minnesota, minneapolis, mn, united states; beth israel/mount sinai, new york, ny, united states correspondence: belinda anderson (banderson@pacificcollege.edu) bmc complementary and alternative medicine , (suppl ):o purpose attitudes and beliefs have profound impacts upon behavior and learn- ing. however, with regard to evidence-based medicine (ebm) educa- tion, little attention has been given to exploring the attitudes and beliefs of complementary healthcare students, faculty and clinicians. methods at the pacific college of medicine (new york campus) surveys (con- taining close-ended and open-ended questions) of chinese medicine students and faculty, and an ethnographic qualitative study of acu- puncturists (via an online forum) were undertaken to explore per- spectives on research, evidence-based and integrative medicine. results the survey response rates for students and faculty were and %, respectively. faculty and students indicated high degrees of interest in, and support for, the value of research and ebm. however, this de- clined as students progressed through their degree programs. re- sponses to the open-ended survey questions, and the qualitative study, indicate that there is concern about paradigm differences, relevance of the scientific method, power dynamics in the healthcare system, and a preference for pluralism over integration. the rele- vance and impact of these outcomes upon learning and clinical prac- tice is discussed. conclusions motivating clinicians to seek out and use the latest evidence to in- form patient treatment requires an understanding of the barriers. some of these have been shown to be practical, like lack of time or access to relevant databases and full text articles, but there is also evidence that significant cultural issues should be considered. o t /r building research across inter-disciplinary gaps (bridg) clinical research training program in complementary and integrative health ryan bradley , cathryn booth-laforce , heather zwickey national university of natural medicine, helfgott research institute, portland, or, united states; university of washington, seattle, wa, united states correspondence: ryan bradley (rbradley@nunm.edu) bmc complementary and alternative medicine , (suppl ):o bmc complementary and alternative medicine , (suppl ): page of question questions remain regarding the optimal approach for clinical re- search training, i.e., training conventionally trained researchers in cih clinical research or training cih clinicians in clinical research methodologies. methods supported by a five-year grant from the national center for comple- mentary and integrative health (nccih), the university of washing- ton (uw) in seattle, wa and the national university of natural medicine (nunm) in portland, or developed the t /r building research across inter-disciplinary gaps (bridg) clinical research training program in complementary and integrative health. the t trains doctoral-level cih providers in clinical research activities at the research-intensive university of washington. the r trains conven- tionally trained researchers in the clinical practices of cih at the clinic-intensive nunm. the translational research spectrum provides a conceptual framework for both programs. program elements in- clude: didactic training in clinical research (t & r ) and in cih dis- ciplines (r ), placement with active clinical research mentors (t & r ), placement with active clinical mentors in cih disciplines (r ), plus shared (t ) and independent (r ) research project develop- ment. t trainees and r participants also co-train on a collabora- tive team science project, i.e., a "implementation of clinical research" practicum, hosted at both training sites. program evaluation includes semi-annual completion of the clinical research assessment inven- tory (crai) which queries confidence in research skills and methods on a - scale; periodic evaluation of programmatic elements using the supplemental kellogg logic –who (skl/who) model, which em- phasizes relevance, adequacy, efficiency, effectiveness, process, im- pact, equity and sustainability; and mentor evaluations. trainee progress is also evaluated using individualized development plans (idps). results t clinical backgrounds include doctors of acupuncture and orien- tal medicine (daom; n = ) and naturopathic medicine (nd; n = ). r research backgrounds include doctors of philosophy in toxicol- ogy (n = ) and nutrition and food science (n = ). mean results of baseline crai assessments suggest moderate confidence in choosing a research topic ( . ), refining a study question ( . ), providing a sci- entific rationale ( . ) and expressing the idea in writing ( . ). mean results suggest less confidence in choosing appropriate research methods ( . ), choosing an appropriate population ( ), designing a statistical analysis plan ( ), choosing an appropriate funding source for their research ( . ) and analyzing data ( ). conclusions by combining clinical research methodologies with immersive men- torship in the context of complementary and integrative health, the uw-nunm bridg program exemplifies a new standard for training clinical researchers in cih. o the national center for integrative primary healthcare - enhancing interprofessional integrative health education benjamin kligler , audrey brooks , mary j kreitzer , patricia lebensohn , elisabeth goldblatt icahn school of medicine at mount sinai, family and community medicine, brooklyn, new york, ny, united states; university of arizona, center for integrative medicine, tucson, ar, united states; university of minnesota, center for spirituality & healing, minneapolis, mn, united states; academic collaborative for integrative health, mercer island, wa, united states correspondence: benjamin kligler (bkligler@chpnet.org) bmc complementary and alternative medicine , (suppl ):o evidence is accruing for the clinical and cost-effectiveness of integra- tive healthcare (ih); however, there is a knowledge gap for primary care professionals, which has hindered widespread adoption of ih into healthcare systems. the university of arizona center for integra- tive medicine received a hrsa grant to establish the national center for integrative primary healthcare (nciph) to address this need. based on a coordinated set of ih competencies across primary care professions and needs assessment, a -hour online interprofess- sional ih course, foundations in integrative health (fih), was devel- oped and pilot-tested in primary care training programs, e.g., family medicine, internal medicine residencies, nursing, pharmacy, behav- ioral health, oriental medicine, chiropractic. units include: introduc- tion to ih; prevention and lifestyle; healthcare professional wellbeing; addressing patients through an integrative lens; integra- tive interventions; and community settings and systems. a unit evaluation survey assesses met objectives, educational depth, clinical utility, helpfulness of resources and reflections, and ease of technol- ogy. a final evaluation assesses interest in applying ih principles in clinical practice, desire to seek additional ih education, course en- hanced educational experience, recommend course, incorporation of self-care practices, and site leader support for completing and relat- ing course to training. items are rated on a -point scale. measures of resiliency and gratitude were completed at the start of the well- being unit and following a two-week daily self-care practice. trainees completed the course. units were highly rated: met ob- jectives ( . ), technology ( . ), clinical utility ( . ), resources helpful ( . ), reflections helpful ( . ), educational depth ( . ) and sharing re- flections helpful ( . ). a majority ( - %) recommended incorporat- ing the units into required training. final survey ratings were also positive: interest in applying in practice ( . ), seek additional ih edu- cation ( . ), course enhanced educational experience ( . ), recom- mend to others ( . ), and leader support for course completion ( . ) and integrating material ( . ). two-thirds reported incorporating new self-care practices based on what they learned in the course. pre- post improvements (p < . ) were observed for the resiliency and gratitude measures. the goal of nciph is to transform primary care health professional education to include an emphasis on providing an integrative ap- proach to patient care utilizing an interprofessional collaborative team. the fih course can serve as a foundation in this effort. an on- line course addresses the challenges of time, cost, and curriculum consistency and can be widely disseminated to the entire spectrum of primary care training programs. o integrative nursing: reflexology effects of a teaching program on nursing students neus esmel-esmel , , maria jiménez-herrera faculty of nursing, nurding, tarragona, spain; nursing, integrative therapy center, tarragona, spain correspondence: neus esmel-esmel (neus.esmel@urv.cat) bmc complementary and alternative medicine , (suppl ):o background reflexology, as a modality of integrative medicine, recognizes the im- portance of the person from a comprehensive and non-invasive care, enhancing the search for a physical, emotional and spiritual balance. the aim of this study was to evaluate the effects of a teaching pro- gram that introduces reflexology as an integrative modality in univer- sity nursing education. methods a descriptive observational study was carried out, in which stu- dents participated. the students responded by initiating and com- pleting the teaching program, the health questionnaire (sf v ) and the emotional intelligence questionnaire (tmms ). the perceived ef- fects during and between sessions were collected on a records grid and their vivid experience were also collected by personal stories. analysis. data were analyzed qualitatively and quantitatively with the ssps v. program. results the results showed an improvement in the quality of life and emo- tional well-being, mainly in regulation and emotional understanding. relaxation and well-being were the most perceived effects. no ad- verse effects were observed. the analysis of the stories revealed a new concept in the understanding of integrative care, as well as the discovery of a new way of understanding the body. the bmc complementary and alternative medicine , (suppl ): page of methodology used was shown to be effective in health education. the students identified the potential of the reflexology within the new paradigm of integrative medicine. conclusions reflexology promotes physical and emotional well-being, facilitating an integrative understanding of the body and health. students affirm the need to include this knowledge in the training nursing program of an integrative and holistic care. o addressing the international acupuncture standards gap for physiotherapists and chiropractors: a comparative review nadine ijaz, heather boon university of toronto, toronto, l a t , canada correspondence: nadine ijaz (nadine.ijaz@mail.utoronto.ca) bmc complementary and alternative medicine , (suppl ):o purpose physiotherapists and chiropractors across north america, the united kingdom, australia and new zealand perform a range of therapeutic needling practices to treat musculoskeletal disorders, including trad- itional east asian acupuncture, traditional acupuncture techniques performed in line with biomedical diagnostic principles, and'dry needling' based on the biomedical hypodermic "trigger point wet needling" research of dr. janet travell. in this work we review and evaluate the range of regulatory and certification standards for these professionals' needling practices across the aforementioned jurisdictions. methods drawing on the scholarly literature as well as a range of public docu- ments (in particular those published by regulatory bodies), we col- lected data pertaining to regulatory needling standards for all chiropractic and physiotherapy professionals across the united states, australia, and canada, where regulations govern acupuncture practitioners. we also collected standards-related data from docu- ments published by several voluntary certification bodies for these same professionals performing therapeutic needling in the united kingdom and new zealand, where acupuncture has not been regu- lated. to gain insight into the rationale behind the identified stan- dards, we critically analysed the standards-related discourses across these documents. results certification and regulatory standards for these needling practices – where such exist – vary widely; and in many cases fall below the internationally-recognized world health organization acupunc- ture training standards recommended for biomedical physicians ( hours). to justify their comparatively low standards for thera- peutic needling, physiotherapy and chiropractic groups discursively differentiate their professional needling activities from those used by other professions; and characterize their core professional trainings as providing the substantive requirements necessary for safe need- ling practice. conclusions there is an urgent need for the development of independent, inter- national training and certification standards for non-physician practi- tioners of biomedical acupuncture, to serve as a consensus document for adoption by physiotherapy and chiropractic regulators across the jurisdictions under study. o why do students in german medical universities select elective courses on acupuncture and homeopathy? – a survey alexandra jocham , beate stock-schröer , pascal o berberat , antonius schneider , klaus linde technical university of munich, münchen, , germany; carstens- foundation, essen, , germany correspondence: beate stock-schröer (b.stock-schroeer@carstens- stiftung.de) bmc complementary and alternative medicine , (suppl ):o question aim of the survey was to investigate what motives students at ger- man medical universities specify when attending elective courses on homeopathy or acupuncture. main focus in this piece of work is the qualitative part of the survey. methods a cross – sectional survey throughout germany was conducted. med- ical students participating in courses on homeopathy or acupuncture during the academic half-year / were asked to take part. a questionnaire was developed consisting of four parts. the first nine- teen items were about attitudes towards complementary medicine and science, care and status orientation. the second part (big-five-in- ventory- ) recorded personal characteristics. part three asked for biographical, study- and career-related data. in the last part, students were asked about personal experience and environment, scientific and opportunistic aspects and the role of the therapy as a comple- ment to conventional medicine. in a free text section they could de- scribe their personal motivation in detail. results medical students in of acupuncture courses (n = ) and in of homeopathy courses (n = ) participated. as personal state- ments in the free text section acupuncture and homeopathy students described the most crucial motivation for their interest in acupuncture or homeopathy. personal experiences, way of working with patients, dissatisfaction with conventional medicine, developing a coherent approach for oneself and also scepticism with acupuncture or homeopathy were recurrent motives. there were differences between the two groups. conclusion medical students interested in acupuncture or homeopathy are moti- vated by personal experiences and a desire for a complement to conventional treatment. o on behalf of an ethical encounter: the influence of health professionals’ training on cowling on the quality of health communicational process morgana masetti (morgana.ops@terra.com.br) psychology, pontificia universidade católica de sao paulo, rio de janeiro, , brazil bmc complementary and alternative medicine , (suppl ):o medicine is, above all, a social science, a process that involves not only technical but human relationships. it"s a place through which we can live experiences related to life, death, suffering and loss. however, the current structure of medicine impedes the of "flowing" this process. medical training gives major focus to procedures, symptoms and technical knowledge, and every- thing that cannot be named under this knowledge framework is not incorporated in health professionals" education. in an at- tempt to reverse this situation, several groups of health stu- dents in brazil include in their training - via university extension programs - preparatory courses to act as clowns in hospitals. through this endeavor, the students are claiming for one im- portant goal: go beyond the university"s learning experiences; thru immersive and grounding experiences on the physical senses (to look, hear, touch) as well as on the reflection about issues such as health, illness and healing. in this communica- tion, the author share the training intervention that was devel- oped (from to ) in doutores da alegria training center, brazil. by the use of games, promptness, and music im- provisation, these workshops aim to encourage the quality of health professionals" communication processes. the research- action process developed around this formative experience will be the focus of reflection. evidence collected over years of intervention and research (based on systematic records of les- sons and evaluations conducted during this period) show the need to create care experiences for health caregivers, and to generate channels of communication, joint reflection and prep- aration for the use of these fundamental skills. bmc complementary and alternative medicine , (suppl ): page of o education with mesacosa concept for healthy living and coping with chronic pain syndromes henriette murakozy (drmurakozy_henriette@yahoo.de) rheumaklinik dr. lauven bad oeynhausen, rheumatolgy, bad oeynhausen, germany bmc complementary and alternative medicine , (suppl ):o question cognitive behaviour and educative methods can play a central role in healthy living and coping with negative stress related conditions like chronic pain syndromes and may prevent early death. our in- novative, integrative, educative, holistic mesacosa (mens sana in cor- pore sano) medical concept for an active and conscious health management can be an important option for coping with these cir- cumstances in the modern medicine. the aim of the study was to in- vestigate the efficiency of our concept for these reasons. methods clinical prospective, long-time follow up study of effectiveness of the mesacosa concept, at the beginning and at the end of each indoor therapy cycle and at the long-time tight control follow up ambulant control investigations. statistical analysis: student t probe of pain re- lief, quality of life, down-regulation of inflammation and reduction of impairment of motion of the inpatients at the beginning and at the end of each indoor therapy cycle and at the ambulant re-evaluations. results improvement and significant alleviation of pain, and inflammatory signs and symptoms, capability for better relaxation, better life qual- ity haq with lower medicine consumption and fewer local cortico- steroid infiltration, effective, long lasting, analgesic and anti- inflammatory potential, relaxing to , months after emission (p < , ), long-time change of life-style & prevention. conclusions beneficial role of behavioural education for healthy living with mesa- cosa concept, completed with a complex physical therapy regime and acupuncture (as a part of tcm) on negative stress related condi- tions and chronic pain disorders. our concept is recommended to prevent or to treat these circumstances, generally for conserve and preserve health, enhance life quality, acquisition capability and maybe for preventing early death as well. o mind-body medicine as a pathway for an improved connection with self and the world around: results from a phenomenological study among medical and nursing students marja van vliet , mats jong , miek jong department of health sciences, mid sweden university, sundsvall, se- , sweden; department of nursing, mid sweden university, sundsvall, sweden; department of healthcare and nutrition, louis bolk institute, driebergen, netherlands correspondence: marja van vliet (marjavanvliet@gmail.com) bmc complementary and alternative medicine , (suppl ):o purpose to obtain an in-depth understanding of the meaning of participation in a mind-body medicine skills (mbm) course in personal and profes- sional lives of medical and nursing students. method the mbm course was adapted from the program developed at georgetown university and included experiential sessions of various mind-body techniques, such as mindfulness meditation, guided im- agery, bio-feedback. eleven medical and fourteen nursing students shared their lived experiences with the course in in-depth interviews which were analyzed using a hermeneutical phenomenological method. the study was conducted next to an intervention study that evaluated the effects on stress, empathy and self-reflection. results the essential meaning was that participation in the mbm course was a pathway to inner awareness and supported in connecting with the surrounding world. students described that the course gave them the opportunity to experience calmness and that they gained the ability to be more present in their personal and professional lives. the course led to an increased awareness of themselves and their emotions and was a barrier opener for further personal growth. in- creased perception of their inner world made them more conscious of the impact of their behavior on others. sharing of personal stories fostered them to connect on a deeper level with others, which they regarded helpful to better understand their patients. conclusion participation in the mbm course fostered medical and nursing stu- dents' perception of themselves and made them more connected to the world around. this experience stimulated participants for further personal growth in their personal and professional lives. traditional healing systems o energy healing for cancer patient - does their perception of cancer change rita agdal (riag@hib.no) health and social sciences, bergen university college, bergen, , norway bmc complementary and alternative medicine , (suppl ):o purpose firstly, to investigate energy healers` (spiritual healers) perception of cancer, illness and health. secondly, how they might influence their patients perception of cancer, illness and health. methods i used a cultural phenomenological methodology for interviews and analysis. energy healers were interviewed (semi-structured) to identify key metaphors in their description of illness, health and can- cer. patients diagnosed with cancer were interviewed four times ( minutes to three hours) to identify changes in perception: before the first treatment with energy healing, after the first treatment, after one and three months. the patient interviews were analysed to iden- tify key metaphors and changes in their description of their illness, health and cancer, and compared to the metaphors used by the en- ergy healers. results energy healers have distinct perceptions of cancer, illness and health that involve a focus on the energy body, as well as causes and cures for cancer. the patients started to use the key metaphors used by energy healers to describe illness, health and cancer, after several visits to the energy healers. some patients thought about this as a process of learning and some changed their health behavior. conclusions the patients perception of illness and health in general, and can- cer in particular, changed as the energy healers treated them. further, these changes in perception lead to changes in health behavior. in some cases the changes in perception influenced the way patients interpreted their own health condition and what would be considered symptoms of cancer from a biomedical perspective. o traditional persian herbal remedies for asthma fatemeh atarzadeh, amir m. jaladat, leila hoseini, fatemeh amini department of traditional medicine, shiraz university of medical sciences, shiraz, , iran, islamic republic of correspondence: fatemeh atarzadeh (dr.atarzadeh@gmail.com) bmc complementary and alternative medicine , (suppl ):o purpose the increasing prevalence of asthma and lack of strong prevention and curative treatment for it has increased seeking for complemen- tary and alternative medicine therapies including traditional persian medicine (tpm). in this study, through investigation of tpm refer- ences, we aimed to identify medicinal plants for treatment of asthma. bmc complementary and alternative medicine , (suppl ): page of methods in this qualitative study, entities about asthma were checked under reliable sources of traditional persian medicine, and recommended medicinal plants were extracted from the books. likewise, for investi- gating the pharmacological properties of offered herbs electronic da- tabases such as pubmed, scopus, google scholar and some iranian databases like sid and iranmedex were employed. results ancient iranian scholars, including avicenna have discussed asthma in their books in a chapter entitled rabv. it has been defined as a chronic disabling dyspnea with periodic attacks like epilepsy. mucous accumulation in the lung is the main etiologic factor, although in rare cases depending on patient symptoms and trigger factors lung dry- ness is considered as the cause with different therapeutic approach. honey, and medicinal herbs such as hyssopus officinalis, ficus carica, drimia maritima, nigella sativa, and glycyrrhiza glabra are among the most common remedies in the management of mucous based dis- ease, while goat milk, barley, cydonia oblonga, astragalus sp., and violette odorante are prescribed for dry cases. conclusions tpm prescribes medicinal plants for asthma based on each patients symptoms and trigger factors. this review will provide new research ideas based on tpm for herbal anagement of asthma. o analysis on clinical symptom regularity and medication rules of herbal prescriptions for pneumonia in preschool children treated by traditional chinese medicine based on apriori and clustering algorithm chen bai, tiegang liu, zian zheng, yuxiang wan, jingnan xu, xuan wang, he yu, xiaohong gu beijing university of chinese medicine, beijing, , china correspondence: xiaohong gu (guxh @ .com) bmc complementary and alternative medicine , (suppl ):o purpose to analyze the clinicalsymptom regularity and medication rules in herbal prescriptions for pneumonia in preschool children treated by traditional chinese medicine (tcm) on the basis of using traditional chinese medicine inheritance support system (tcmiss). methods the clinicalsymptoms and herbal prescriptions for pneumonia in pre- school children treated by tcm were collected from the literatures in china national knowledge internet (cnki), and then the data were entered into tcmiss. and the symptom regularity and medication rules were analyzed by the unsupervised data mining methods such as apriori algorithm and complex system entropy clustering in order to find the core symptom profile and new symptom as well as the core medication profile and new prescriptions. moreover, there was the network association among the symptoms, syndrome and chin- ese medications. results based on the analysis of medicalrecords and herbal prescrip- tions from cases, the occurrence frequency of each symptom and the association rules among the symptoms were determined. there were core symptom profiles and new symptoms with the car- dinal symptoms as follows: . yellow sticky phlegm; . dry lips and crimson tongue; . fever and asthma; . nasal obstruction and white- greasythicktonguefur; . scanty sputum; . sputum hard to expector- ate and paroxysmal cough. as for the medications, there were core medication profiles and new prescriptions with the main herbs as followings: . maidong (radix ophiopogonis); . mahuang (herba ephedrae); . zhuru (caulis bambusae in taenia); . ziyuan (radix asteris); . taoren (semen persicae); . pugongying (herba taraxaci). conclusion for the preschool children with pneumonia, respiratory infection symptoms with damp-heat nature are with the highest occurrence frequency. and the commonly used traditional chinese medicines were the exterior-releasing medications, the heat-clearing medications, the yin-nourishing medications and the phlegm- resolving and asthma-relieving medications. o insomnia in traditional persian medicine babak daneshfard , majid nimrouzi , vahid tafazoli student research committee,shiraz university of medical sciences, shiraz, iran, islamic republic of; traditional persian medicine, shiraz university of medical sciences, shiraz, iran, islamic republic of correspondence: babak daneshfard (babakdaneshfard@gmail.com) bmc complementary and alternative medicine , (suppl ):o insomnia is a commom complaint in out-patient clinics. it usually af- fects quality of life negatively specially in severe cases. nowadays, routine medical interventions comprise pharmacological approaches and cognitive behavioural therapy. commonly used medications for the afflicted patients are not competent enough beside their annoy- ing side effects. it would naturally denotes the need for considering novel strategies for treating insomniac patients. approach to insom- nia in traditional persian medicine (tpm) has been cited in a scruti- nized manner focusing on its main causes. accordingly, its treatment is tailored based on the constitution of the patient, intensity of the disease, and type of the cause. this study aimed at defining the causes of insomnia, diagnostic approach, and various medical inter- ventions proposed in valid sources of tpm. o assessment of the impact of traditional persian medicine lifestyle recommendations in the treatment of chronic constipation, a randomized controlled clinical trial seyed m emami alorizi, seyed a saghebi, mohammad r fattahi, alireza salehi, hossein rezaeizadeh, mohammad m. zarshenas, majid nimrouzi traditional persian medicine, shiraz university of medical sciences, shiraz, , iran, islamic republic of correspondence: seyed m emami alorizi (smemami@sums.ac.ir) bmc complementary and alternative medicine , (suppl ):o background to manage chronic constipation, numerous lifestyle modification schemes and recommendations as well as applications of natural me- dicaments have been mentioned in manuscripts of traditional persian medicine (tpm). this study was aimed to compare the impacts of some of those recommendations with lactulose, on functional chronic constipation. methods via a blocked randomization, patients were enrolled. schemes and recommendations from tpm as intervention group were evalu- ated versus lactulose as control by weekly follow-ups with standard questionnaire for months. stool frequency, hard stool, painful defecation, incomplete evacuation sensation, anorectal obstruction sensation and manual maneuvers were considered as outcome measures. results eighty-six patients ( in schemes and in lactulose groups) com- pleted the study. median weekly stool frequency in , , and weeks of treatment was . _ . , . _ . , . _ . and . _ . in the schemes and . _ . , . _ . , . _ . and . _ . in lactulose groups, respectively (p = . , . , . , . ). thirty-two ( . %) patients in schemes and ( . %) patients in lac- tulose groups were treated at the end of the protocol as they did not meet the rome iii criteria for constipation (p = . ). in schemes group, patients reported no undesirable effects, whereas seven ( . %) in lactulose group reported flatulence (p = . ). conclusions studied schemes were as effective as lactulose, a gold standard to manage constipation. results demonstrated that tpm schemes and recommendations, as lifestyle modification, for at least months can be introduced as cheap, available and accessible approaches for the management of constipation. bmc complementary and alternative medicine , (suppl ): page of keywords: clinical trial, constipation, lactulose, lifestyle modifications, persian, traditional medicine. o kūkulu ola hou. reconstructing the native hawaiian medical inventory based on traditional and contemporary kānaka ʻŌiwi perceptions of illness and disease kealoha fox (kealohaf@oha.org) john a burns school of medicine, office of hawaiian affairs & university of hawaii at manoa, honolulu, , hawaii, united states bmc complementary and alternative medicine , (suppl ):o purpose medical ethnohistories suggest a deep and rich philosophy of health and sciences ancestral to the ancient practices of kānaka ʻŌiwi (native hawaiians (nh)). the objective of this exploratory qualitative health study examines the customs, rituals, and prac- tices relating to hawaiian maʻi, or nh conceptualizations of ill- ness, sickness and disease, and produced an inventory of findings. this research is motivated by the desire to apply trad- itional hawaiian systems of health and medicine to the analysis and resolution of clinical questions. methods hawaiian research processes were developed to conduct this mixed method study across eight arms before validating both traditional and contemporary knowledge and beliefs. an inductive qualitative method based on in-depth open-ended interviews was undertaken. primary data collection consisted of key informant in- terviews (n = ) and one focus group (n = ). the key informant sample was selected by snowball sampling of men and women aged – years with expert practice in traditional hawaiian medicine. the data were analyzed according to grounded theory. additionally, we conducted one focus group from a cohort sam- ple of intermediate level practitioners of traditional hawaiian medicine. the data were analyzed according to phenomenology procedures. secondary data collection, synthesis and analyses were conducted in english and ʻŌlelo hawaiʻi (hawaiian lan- guage) utilizing over , records in multiple hawaiian king- dom era archives (n = ). results study significance indicates the first comprehensive manual documenting knowledge of hawaiian maʻi. comparative analysis from the primary participants confirmed maʻi from secondary sources through novel collections. using robust data analysis techniques, we systematically coded more than , unique hawaiian maʻi based on the ancestral taxonomy unique to the traditional hawaiian health system. several specific maʻi will be shared to illustrate the etiological context to these findings. pre- liminary analysis of qualitative feedback demonstrated enthusi- asm for the project across the study contributors and stakeholders. conclusion this unprecedented study documents the etiology and diagnos- tics of ailments, illness, sickness and disease from a traditional system of mauli ola loa. hawaiian maʻi provide an epistemological framework of pathologies which are culturally shaped and enable us to examine the links between culture, history, and biological disease, which together generate lāhui (population-based) imbal- ance. qualitative findings suggest this integrative medical inven- tory can inform diagnostic process and improve diagnosis procedures for nh health care. further, it can create new quality standards for culturally and linguistically appropriate services for nh health.[university of hawaii human subjects protection review approved chs# ] o europe-wide pilot field testing the traditional medicine (tm) chapter of the icd- john hughes , nenad kostanjsek , stéphane espinosa , george lewith , peter fisher royal london hospital for integrated medicine, uclh nhs trust, london, wc n hr, united kingdom; world health organization, geneva, switzerland; university of southhampton, southhampton, united kingdom correspondence: john hughes (john.hughes@uclh.nhs.uk) bmc complementary and alternative medicine , (suppl ):o purpose the world health organisation recently developed international clas- sification of diseases codes for traditional medicine (tm icd- ). the tm icd- codes are based on a unified set of traditional medicine disorders and patterns based on national classifications from china, japan and korea. the primary objective of the study was to pilot field test the tm icd- codes. methods mixed methods approach including, online european survey of prac- titioner views on tm icd- codes; coding process of case study vi- gnettes to establish inter-rater reliability; and survey of coders experiences of using tm icd- codes. results online survey questionnaires completed. key findings included, the majority of participants agreed the tm icd- codes provide a meaningful way to classify tm disorders and patterns ( %); believed their patients diagnosis can be represented within the tm icd- codes ( %); believed the distinction between tm disorders and pat- terns was clear ( %); and did not feel any categories were mis- placed ( %). european acupuncturists coded case study vignettes and provided details on their experiences of using the tm icd- codes. key findings included, participants perceived the tm icd- codes as being of greatest use for communicating with col- leagues/professionals; the main added value of the tm icd- codes could be an increase in the appreciation, acceptance and integration of tm within conventional medical systems. a first attempt at asses- sing the inter-rater reliability of diagnoses of case study vignettes showed a low level of agreement. conclusions the findings indicate european tm practitioners perceive the tm icd- codes as valuable, conceptually accurate, and easy to learn. o principles & factors of safest use of unani drugs in the light of pharmacoviglance abdul latif (abdullatifamu@gmail.com) aligarh muslim university, department of ilmuladvia (unani phamacology), aligarh, india bmc complementary and alternative medicine , (suppl ):o unānī medicine is said to have a holistic approach; it refers to the whole knowledge as a total recognition of the patients condition. is there any rationality in its principles, is the first question to answer? looking at the concept and principles of unānī medicine, it is clear that it does not interfere with physiologically inherent forces of medi- catrix naturae, that is of self-preservation. the purpose of unānī medicine is to assist natural recuperative power and thus eradicate the disease from the human body. factors associated with preventable adverse drug reactions (adrs) in a unani medicine hospital patient population are well documented. the data were collected by concurrent review of all adrs reported by unani physician in their literature as patient details, adr variables, bmc complementary and alternative medicine , (suppl ): page of length of stay, and preventability of adr. these adrs are identified as preventable and developed based on these factors. principles of safety evaluation carried out on the basis of medical ethics and pharmacovigilance of unani system of medicine. however, unānī drugs can also produce some harmful effect, but lots of in-vitro and in-vivo techniques for detoxification of unani drugs that are followed along with precautions for minimizing the harmful effects. o acupuncture evidence based medicine practice for stroke rehabilitation donald lefeber, william paske memorial hermann/community medical foundation for patient safety, bellaire, tx, united states correspondence: donald lefeber (djlefeber@comofcom.com) bmc complementary and alternative medicine , (suppl ):o question research has been done to assess efficacy and effectiveness of acu- puncture, however, there is still much to learn about its mechanisms and treatment effects for stroke rehabilitation [ , ]. an exploratory research study using ru-fittm [ , ] medical device tested; is it possible to obtain physical measurements of fine motor control (fmc) that directly correlate to acupuncture treatment and protocol and perhaps coincide with treatment outcomes? a case is presented— year-old male that suffered from stroke years ago—hemorrhagic infarction left thalamus. methods throughout three months of acupuncture treatments subject was tested before and after acupuncture with fda-approved medical in- strument ru-fit™, to obtain measurements based on fmc, reaction time, hand strength and coordination variation. results right hand fmc measurements originated at % (normal probabil- ity) and fluctuated between %- % through first weeks. in last month, fmc measurements appeared in upper - percentile. left hand fmc measurements originated at %. within first treatments increased to % and maintained in high th percentile for duration of acupuncture treatment period. observed treatment outcomes dur- ing treatment period were slightly improved gait, increased coordin- ation and grip in both hands. conclusion difficulty exists to track improvements and/or changes for stroke rehabilitation. fmc physical measurements are attribut- able to acupuncture. data indicates treatment outcomes are a function of acupuncture point selection, treatment frequency. having a device to objectively measure changes in fmc may aid in: producing more optimal treatment protocol and out- comes for patients, inspiring increased treatment compliance, understanding the effectiveness/efficacy of acupuncture for stroke rehabilitation. citations . yang, a., hm wu, jl tang, l. xu, m. yang, and gj liu. "acupuncture for stroke rehabilitation." ( ). cochrane database of systematic reviews. . li, li, hong zhang, shu-qing meng, and hai-zhou qian. "an up- dated meta-analysis of the efficacy and safety of acupuncture treat- ment for cerebral infarction." plos one . ( ). . mireles c, paske wc. mtbi screening based on functional assess- ment of fine motor control. in: brain injury association of texas th annual conference; ; austin. . paske wc, metzger cl, sutherland jm. biomechanical hand- functionality measurement system. review of scientific instruments. ; : ( - ). medicine and arts o the inherent relationship of yamamoto new scalp acupuncture (ynsa) with awareness under conscious hypnosis (auch©) method ali Ö Öztürk, gizemnur Öztürk the society of medical hypnosis (thd), istanbul, turkey correspondence: ali Ö Öztürk (auchozturk@gmail.com) bmc complementary and alternative medicine , (suppl ):o purpose to elaborate the inherent relationship of yamamoto new scalp acu- puncture (ynsa) microsystem with a conscious hypnosis method named "awareness under conscious hypnosis (auch©)". methods auch© is a state of consciousness created by specific induction tech- niques and suggestions; and it aims to make changes in attention, perception, memory, emotions and senses of the patient. to create these aimed changes; auch© has a treatment protocol consisting of three steps: " ) maya© (making acceptance with your awareness), ) induction and ) autohypnosis". on the other hand, auch© can be used integratively in different fields of medicine including acu- puncture. to be more precise, there is a great similarity and relation- ship with ynsa microsystem zones & points and the various body areas induced spontaneously during hypnotic rituals as a part of the "eye-to-eye fixation and giving suggestions technique", the main in- duction technique of auch© method. in other words, various points and zones stimulated via the active use of "hand passes, touchings and tapings" during hypnotic induction coincide inherently with ynsa microsystem. results the inherent relationship of ynsa with auch© method is analyzed by mapping ynsa zones & points coinciding with the hypnotic appli- cation areas induced spontaneously during hypnotic induction. conclusions the mapping illustrating the inherent relationship of various ynsa acupuncture zones & points with hypnotic application areas summa- rizes the similarities of ynsa microsystem and auch© method comprehensively. keywords: microsystems acupuncture, yamamoto new scalp acu- puncture (ynsa), awareness under conscious hypnosis (auch©), medical hypnosis, integrative medicine. various topics o the development of an evidence-based decision aid concerning complementary and alternative medicine (cam) for parents of children with cancer inge boers , wim tissing , marianne naafs , martine busch , miek jong , healthcare & nutrition, louis bolk institute, driebergen, la, netherlands; pediatric oncology, university medical center groningen, university of groningen, groningen, netherlands; netherlands childhood cancer parent organization vokk, nieuwegein, netherlands; van praag institute, utrecht, netherlands; nursing, mid-sweden university, sundsvall, sweden correspondence: inge boers (i.boers@louisbolk.nl) bmc complementary and alternative medicine , (suppl ):o question cam is often used by parents of children with cancer to reduce side- effects of regular treatment or to improve quality of life. support is needed for making well-informed decisions, essential for self- management, communication and shared decision making. the ob- jective of this project was to develop and implement an evidence- bmc complementary and alternative medicine , (suppl ): page of based decision aid concerning cam for parents of children with can- cer, which is widely accepted by future users. methods the project consisted of four phases. during phase an inventory was made on the current state of information and needs of parents. literature and internet searches, questionnaires and focus group dis- cussions with parents and healthcare professionals were used. during phase content of evidence was gathered based on a grade ana- lysis including systemic literature search and expert opinion. in the rd and th phase an informative website was developed, imple- mented and evaluated. results little information sources were found for parents concerning cam and pediatric oncology in the netherlands. parents underlined the importance of reliable information, especially focused on communi- cation and complaints as: fatigue, anxiety, pain and sleeping prob- lems. a grade analysis was performed to investigate the effectiveness and safety of cam for pain. evidence of good quality was found for hypnotherapy in contrast to moderate to low quality for other cam. chosen form of decision aid was an informative web- site for parents, embedded in regular care. conclusion a start was made on the development of an evidence-based inform- ative website for parents, focused on the complaint pain. next steps will be to extend the website with evidence for cam on other cancer-related complaints. this project was a unique collaboration of patients, healthcare professionals and researchers. o from virtuality to repeatable patterns: consciousness as the governing software babak daneshfard , mohammad r sanaye shiraz university of medical sciences, student research committee, shiraz, iran, islamic republic of; shiraz university of medical sciences, essence of parsiyan wisdom institute, phytopharmaceutical technology and traditional medicine incubator, shiraz, iran, islamic republic of correspondence: babak daneshfard (babakdaneshfard@gmail.com) bmc complementary and alternative medicine , (suppl ):o the consciousness field as manifested through a series of treatments not normally obtainable by conventional methods, has been the pivot of so many papers, articles, and reviews by the iranian tradition of mind-body healing (most recently named: faradarmani). the ap- proach in this methodology would be the mending of "software structuration" rather than making attempts to focus on merely mater- ial hardware. accordingly, consciousness is described to be the differ- ential field of constant repeatability by means of which not only the blueprints of living entities are provided, but also the mannerism of their probable repairing is to be set down. in addition, immunity could also be elucidated by means of the same field(s) that are present to return likely abnormalities back to their original natural state. the very fact that not all vectors of pathogens fall victims to varieties of diseases, might be evidence to the novel theory of "consciousness immunity". there is, of course, the capacity to link on to such consciousness field(s) for purposes of activating so many potentialities including repair, fractal correction, and medical treatment. room is undoubtedly extant for basic and applied multidisciplinary investigation when it comes to scientifically expanding upon the re- peatable patterns of existence and curing throughout the cosmos of entities —be they of the animal kingdom, plant kingdom, human be- ings, or even non-living materials. o induction of coherent fields in osteopathic treatment proposes to be potential by influencing the genetic field kilian dräger (draeger@daego.de) dÄgosteopathy, hamburg, germany bmc complementary and alternative medicine , (suppl ):o the genetic code was seen as stable reference of the body that guar- antees cell identity and health. now the genetic code shows up with much higher variability, more like a genetic mosaic. the genome dif- fers even from conception to birth, with every cell division. transposons take an important part in that process and they are reg- ulated by some molecules. how does a molecule make its decision of building in or keeping out a tranposon? where does the body rely on? the body expresses itself in motion, analyzed in direction, force and frequency. micro- and macromotion can be described as multidimen- sional coherent oscillation via molecules, cells, tissues and functional organs. e.g. connective tissue has this physiologic steady circle of decline and reconstruction with various processes such as signal transduc- tion, metabolic function and mechanisms for compensation and stabilization of body integrity [ , , , , , , ]. all functions can be seen as motion, as change from one state to another. physiologic motions are going to be synchronized. dysfunction oc- curs by divergence and incoherence. the decision of assimilation or separation of a transposon or any part of the body could be made by identifying a divergence in a coherent oscillation field, like identifying a divergent instrument in an playing orchestra. it isnt able for coherent oscillation. osteopathic treatment is aiming for reintegration of divergent zones into the coherent field(s) of the body. this is implemented by balanced-techniques, which use a simple general physical option of synchronization: connection and freedom of movement. references . langevin, helene/cornbrooks, carson/taatjes, douglas ( ):fibroblasts form a body-wide cellular network, histochem cell biol : - . langevin, helene ( ): dynamic fibroblast cytoskeletal response to subcutaneous tissue stretch ex vivo and in vivo, am j physiol cell physiol : c -c ; first published october , . langevin, helene et al. ( ): fibroblast spreading induced by connective tissue stretch involves intracellular redistribution of α- and β- actin, histochem cell biol : - . iatridis, james et al. ( ): subcutaneous tissue mechanical behaviour is linear and viscoelastic under uniaxial tension, connective tissue research, : - . ingber, d.e. et al.( ): cellular tensegrity: exploring how mechanical changes in the cytoskeletton regulate cell growth, migration and tissue pattern during morphogenesis, int. rev. cytol. , - . ingber, d.e. ( ): mechanical control of tissue morphogenesis during embryological development. int j dev biol, , - . dräger, kilian/heede, patrick van den/kleßen, henry ( ): osteopathie – architektur der balance, elsevier urban fischer verlag, münchen o the implications of the world health organization traditional medicine strategy - for integrative medicine peter fisher (peter.fisher@uclh.nhs.uk) royal london hospital for integrated medicine, london, wc n hr, united kingdom bmc complementary and alternative medicine , (suppl ):o bmc complementary and alternative medicine , (suppl ): page of question what are the implications of the who traditional medicine strategy for integrative medicine? results the who traditional medicine strategy was adopted at the world health assembly in may . it has important implications for inte- grative medicine. the terms "traditional medicine" (tm) and "trad- itional and complementary medicine" (t&cm) are used interchangeably. it has strong support from director-general dr mar- garet chan who said that t&cm is an important and often underesti- mated part of health care; there is a need for a cohesive and integrative approach that allows governments, practitioners and users to access t&cm in a safe and effective manner; and that pro- active policy towards this important often vibrant and expanding part of health care is required. the goals of the strategy are to harness the potential contribution of t&cm and to promote its safe and effective use. the objectives are in terms of policy: integrating t&cm into national health care sys- tems; safety, efficacy and quality; access to increase availability and affordability; rational use by practitioners and consumers. challenges include integration of t&cm into universal health coverage (uhc) and primary health care (phc), lack of research, communication, and reliable information for consumers. the integrative medicine commu- nity is a key stakeholder in this strategy. actions recommended for stakeholders include: establishing best practice; recommending re- search priorities; advising on risks and benefit; promoting a culture of communication, evaluation, education and innovation; increasing the availability of literature, database and other knowledge resources; developing research methods consistent with t&cm concepts; build- ing research capacity and promoting international collaboration in- cluding protection of intellectual property. who has developed icd- codes for oriental tm diagnoses. it is reviewing the safety of t&cm practices, starting with acupuncture. conclusions the who tm strategy is an important opportunity to encourage offi- cial and funding bodies to support integration in uhc and phc and research. we should emphasise our strengths including effective, safe, popular, economical, eco-friendly treatments which harness nat- ural healing; continue to strengthen the knowledge base; promote communication; develop and disseminate effective models of inte- gration in uhc and phc. establishing accessible databases to inform evidence-based policy on integration particularly in middle and low income countries is a high priority. o food literacy and attitudes in a healthy population of us adults mary j kreitzer, roni evans, brent leininger, kate shafto, jenny breen center for spirituality & healing, university of minnesota, minneapolis, mn , united states correspondence: mary j kreitzer (kreit @umn.edu) bmc complementary and alternative medicine , (suppl ):o question this study focused on factors related to food literacy and healthy eating behaviors in adults including individuals knowledge of healthy food choices; confidence related to food choices and preparation; and preferences for education. obesity is one of the most serious public health challenges of the st century and is among the lead- ing causes of deaths globally. methods the population surveyed included a convenience sample of adults ( of age and over) who agreed to complete a survey on an ipad while attending a large public event. results adults who participated in the study were primarily female ( %), well educated ( % with year college degree or above, and healthy ( % described themselves as healthy or very healthy). des- pite being confident in their ability to chose healthy food ( %), scores revealed a lack of food literacy. for example, less than / knew the usda healthy plate recommendation around the percent of food that should be fruit and vegetables and that transfat is the least healthy fat to consume. slightly over a / reported that they cook food daily for themselves. factors preventing them from eating healthy foods include lack of time, willpower and a demanding work or travel schdedule. the sources of information that most influenced eating were family and friends ( %), followed by health profes- sionals ( %) and tv cooking shows ( %). conclusion consumer food literacy and reported barriers to healthy eating likely contribute to unhealthy eating and the public health problems asso- ciated with obesity and chronic disease. o hct (holistic clinical trials) and ict (integrative clinical trials) mohammad r sanaye , babak daneshfard shiraz university of medical sciences, essence of parsiyan wisdom institute, phytopharmaceutical technology and traditional medicine incubator, shiraz, iran, islamic republic of; shiraz university of medical sciences, traditional persian medicine, shiraz, iran, islamic republic of correspondence: babak daneshfard (babakdaneshfard@gmail.com) bmc complementary and alternative medicine , (suppl ):o any holistic medicine, if it is to be truly holistic, cannot possibly take the policy of escapism from clinical trials. the intention to design ex- perimental trials on animals before coming over to humankind has been focused on to procreate the most state-of-the-art clinical trials for human holistic medicine. thus, split-plots [and even: split-split plots] are brought at work to employ the full efficiency of bayesian statistics for purposes of holistically infer posterior likelihood in cases of predictions based on priors. this spells that on the on the one hand clinical trials are not necessarily to be of randomized nature. on the other hand, the basic ideas of hct [holistic clinical trials] and ict [integrative clinical trials] by means of incorporating algebraic- topologic notions (rather than simple numerically crunched data analysis) into the main body of any trial of clinical essence, thence, emerges to be the most applicable handy clinical trials of near-future medicine. o organic food consumption during pregnancy and its association with health-related characteristics: the koala birth cohort study ana p simões-wüst , , carolina moltó-puigmartí , martien van dongen , pieter dagnelie , carel thijs obstetrics, university hospital zurich, zurich, , switzerland; research, clinic arlesheim, arlesheim, switzerland; epidemiology,caphri school for public health and primary care, maastricht university, maastricht, netherlands correspondence: ana p simões-wüst (anapaula.simoes-wuest@usz.ch) bmc complementary and alternative medicine , (suppl ):o while evidence for health-related benefits of consuming organic foods is scarce, their consumption has been shown to be often ac- companied by specific food patterns. the aim of the present study was to investigate whether the consumption of organic food during pregnancy and accompanying food pattern are associated with se- lected health-related characteristics and biomarkers. blood from pregnant women participating in the koala birth cohort study as well as information on demographic, lifestyle, health-related and diet characteristics was collected and analysed. participants were grouped depending on whether none (reference group), less than %, between % and %, or more than % of the consumed food was of organic origin. consumption of organic food was associated with a more favourable pre-pregnancy bmi and a lower prevalence of gestational diabetes. plasma levels of ferritin, homocysteine, -hydroxyvitamin d and plasma triglycerides were lower in the organic groups than in the ref- erence group. plasma phospholipid levels of several fatty acids dif- fered among the various groups. compared with the reference group, markers of the intake of trans fatty acids from natural origin bmc complementary and alternative medicine , (suppl ): page of (e.g. vaccenic and rumenic acid) were higher in the organic groups, whereas elaidic acid, a marker of the intake of trans fatty acids found in industrially hydrogenated fats was lower. the lower intake of animal products previously observed in the or- ganic groups is likely to play a role in the differences found in bio- marker levels. potential health-related effects of a diet associated with the consumption of organic food are discussed. o : practical strategies for creating a successful integrative medicine and health program shelley white (shelley.white@hci.utah.edu) huntsman cancer institute/university of utah, wellness and integrative health center, salt lake city, ut, united states bmc complementary and alternative medicine , (suppl ):o since many presentations evaluate integrative program offerings through scientific abstracts, this presentation will offer practical strat- egies and instruction on how to set up successful program services. this session will provide descriptive details about how the presenter was able to increase integrative health and medicine services at the huntsman cancer institute, an nci comprehensive cancer center, at the university of utah from five program offerings to forty program offerings for patients, caregivers, and staff within a five-year period. total visits increased by nearly % from , in to , in . the wellness and integrative health center at the huntsman cancer institute offers forty services to people affected by cancer. uniquely, therapeutic services are offered on site, within our clinical medical setting. services include: acupuncture, art, bone health/osteoporosis, clinical hypnosis, cooking demonstration classes, core & stretch, cre- ative and expressive writing, cranial sacral therapy, dance, energy medicine, cancer exercise fitness therapy, group circuit training, inte- grative oncology consultations, jin shin jyutsu, laugh/live out loud, look good-feel better, massage therapy, mind-body medical inter- ventions (meditation, mindfulness-based practices), music therapy, narrative therapy (life story recordings), nutritional counseling, osteo- pathic manipulation treatments, pilates mat, physiatrist visits, qigong, resistance training, road-biking, rowing, running, snow-shoeing, tai- chi, weight reduction, yoga, yogalates, and zumba® the presenter is currently working with the chief wellness officer, the associate vice president for health equity and inclusion, the medical director for supportive oncology and survivorship, a distin- guished professor in the college of nursing and investigator and co- leader of cancer control and population sciences at the huntsman cancer institute, the director of nursing and patient care services, the associate dean of research for the graduate school of social work, the associate vice president for the art, and the associate dean of research for the arts to bring campus clinical programs into additional health care and community settings to provide additional clinical, educational, and research opportunities. the community space will offer arts, wellness, psychosocial service as well all of the integrative health services we currently offer on-site with the addition of an arts installation space; performance space; a counsel- ing center (for psychosocial services); a recording studio for music therapy, spoken word, and life stories; group fitness and dance space; additional exercise and research space, and medical follow-up clinic space for patients who need post-treatment follow-up. the presenter also managed patient and family support (emotional, spir- itual, and practical services). o the broken link! combining conventional and complementary medicine in a safe health care delivery chain solveig wiesener, anita salamonsen, trine stub, vinjar fønnebø faculty of health care sciences, nafkam, tromsø, , norway correspondence: solveig wiesener (solveig.wiesener@uit.no) bmc complementary and alternative medicine , (suppl ):o question the aim of the study is to analyze how a combination of conven- tional medicine and cam (complementary and alternative medicine) may affect patient safety, and investigate whether the concurrent use of cam threatens patient safety in conventional health care services. methods we have reanalyzed the eu fp cambrella data collected on regula- tion of cam in countries in europe and the european union (eu), and supplemented this with recent emerging knowledge in the area. results the world health organization (who) and the eu have both given priority to safety and patients" right to choose treatment. conse- quently, the regulation of national health care services in many coun- tries focuses on strengthening patient safety and highlights patients" right to choose safe and suitable treatment. moreover, public patient safety strategies, especially within cancer treatment, highlight "a safe pathway of treatment". about % of norwegian patients combine cam and conventional treatment, and surveys conducted in europe demonstrate the same trend. we found, however, insufficient documentation on safety and risk as- pects when patients combine cam and conventional medicine. the risks and safety challenges include lack of communication between health personnel, patients and cam providers, negative interactions between herbal and medicinal products and insufficient patient in- formation. further, there are challenges with regard to supervision, claims and reimbursement. conclusions combining cam and conventional medicine may influence patient safety. there are risk and safety challenges due to disharmonized regulation, unclear treatment standards, insufficient patient informa- tion and lack of communication between health care professionals and cam providers. posters research p cobalamin (vitamin b ) functional status is not correctly assessed by common biomarkers being used: case reports and a review of the literature sergio abanades , mar blanco , laia masllorens , roser sala research, human nutrition and functional medicine, barcelona, , spain; nutrition, cofb, barcelona, , spain; synlab diagnósticos globales, clinical analysis, barcelona, spain correspondence: sergio abanades (s.abanades@gmail.com) bmc complementary and alternative medicine , (suppl ):p question main biomarkers of cobalamin status include blood concentrations of cobalamin, holotranscobalamin (holotc), methylmalonic-acid(mma) and homocysteine (thcy). however, only cobalamin blood concentra- tions are usually measured. methods high plasma cobalamin levels in spite of suspected low cobalamin functional status were found in clinical cases. clinical symptoms and additional biomarkers of cobalamin low status were assessed. in- testinal dysbiosis was also tested by the kyberkompaktpro test. re- view of the literature included the european food safety authoritys position document on reference values for cobalamin. pubmed data- base was also reviewed (september ). key words included co- balamin, holotranscobalamin, vitamin b , dysbiosis and small- intestinal-bacterial-overgrowth. results standard serum cobalamin concentration comprises both the func- tional and the inert fractions of cobalamin and refers typically only to standardised cyanocobalamin levels. cut-off values have not yet been clearly defined and are not correlated with functional status. in the patients described, in spite abnormally high levels, clinical signs bmc complementary and alternative medicine , (suppl ): page of of cobalamin low-status were found in conjunction with thcy abnor- mal high values. intestinal dysbiosis was also present. resolution of dysbiosis and administration of methyl-cobalamin normalised cobala- min levels and improved clinical status in the cases reported. conclusions measurement of serum cobalamin levels alone is not an adequate method to assess cobalamin functional status. a combination of bio- markers including holotc is more suitable for assessing functional cobalamin status. cobalamin plasma concentrations could be falsely raised in several medical conditions where low cobalamin functional status is present. correct treatment of intestinal dysbiosis could lead to improvements in cobalamin functional status. written informed consent for the publication of these details was previously obtained from the participants. p factors influencing self-care behaviors (khat use) among type ii diabetes mellitus patients in yemen shafekah al-ahnoumy , dongwoon han , luzhu he , ha yun kim , da in choi hanyang university, college of medicine, seoul, - , south korea; global health and development, hanyang university, college of medicine, seoul, , south korea correspondence: shafekah al-ahnoumy bmc complementary and alternative medicine , (suppl ):p purpose worldwide, diabetes mellitus (dm) is becoming a big challenge, par- ticularly the prevalence of dm is higher in arab regions than global average with predominance of type ii dm. self-care as a cost- effective intervention was presented as a solution of diabetes pre- vention and management by who and aade. diabetic individuals in- dependently make decision and different life activities to maintain their health condition, prevent dm related complications and im- prove life quality. good diabetes self-care behaviors can be affected by many factors, including social, cultural, financial and health care system. however, to our best knowledge, factors influencing diabetes self-care behaviors hasnt been investigated among yemeni diabetic patients.the aim of this study wasto provide an overview of self-care behaviors among type ii dm yemeni patients, and expound the affect factors and barriers of self-care behaviors among them. methodology a descriptive cross-sectional study was designed. participants were out-patients, who were approached in major public govern- mental hospital (al-gumhouri, al-thawra and al-kuwait hospital and the university of science & technology hospital) and major private hospital in sanaa city(capital city), during th october to th no- vember, . a questionnaire was developed with parts, including self-care behaviors, diabetic characteristics, barriers of self-care be- haviors, knowledge level of dm and social- demographic characteris- tics. data collected through face to face interview survey, then coded and analyzed with excel and spss software . chi-square was used to test association between self-care behaviors and independents variables. results only . % of patients had good self-care behavior score, most of them had fair to poor self-care. taking medicine, general diet and ex- ercise were the most taking self-care behaviors among good self- care behavior patients. specifically, over half of patients reported they were chewing khat, among them . % take khat every day. the biggest barriers of self-care behaviors was insecure situation, fol- lowing were lack of transportation and lack of electricity. analyzing with chi-square, house-hold income, whether having glucometer, meal plan, snacks per day and dm duration were factors influencing the self-care behaviors. conclusion type ii diabetes patients in yemeni have not good self-care behav- iors. taking medicine is the most self-care behavior, but testing blood glucose was the lowest. it emphasizes the role of health care workers to support patients with required knowledge and skills to improve their health outcome. p «everyone with a chronic disease should be offered this program» - participants experience with an integrative medicine group program terje alræk , trine stub , agnete kristoffersen , christel von sceidt , andreas michalsen , stig bruset , frauke musial department of community medicine, national research center in complementary and alternative medicine, nafkam, uit, the arctic university of norway, tromsø, , norway; mind body medicine, immanuel krankehnhaus, berlin, germany; institute for social medicine, epidemiology and health economics, charité university hospital, berlin, germany; regnbuen helsesenter, lierskogen, norway correspondence: terje alræk bmc complementary and alternative medicine , (suppl ):p background the integrated medical care rehabilitation (imcr) program was de- signed for patients with amalgam-attributed health complaints. spe- cial emphasis was placed on patient participation and patient empowerment. the aim of this qualitative study was to describe per- sonal feedback on mental, emotional, and bodily experiences with the program. methods qualitative data were drawn from the study participants (n = ) from the three intervention groups. four open questions were asked as part of a anonymized questionnaire, which presented a possibility to describe personal experiences with the imcr program. the question- naires were sent back to the research team in sealed envelopes. ana- lysis method was systematic text condensation. results most participants were very satisfied with the program. they appreci- ated the resource oriented focus of the program. after completion of the training, many participants integrated relaxation and breathing exercises into their daily lives and reported calmness and a more positive view on life. conclusion data from this qualitative study suggests that a program with several modalities such as life style advices, complementary ther- apies, relaxation exercises and stress management tools is benefi- cial for chronically ill patients with amalgam attributed health complaints. beyond that, we conclude that the imcr program can be useful for chronically ill patients with a similar symptom profile. p systematic review and meta-analysis of herbal medicine in children with respiratory tract infection dennis anheyer , holger cramer , romy lauche , felix j saha , gustav dobos department of complementary and integrative medicine, kliniken essen mitte, university of duisburg-essen, essen, , germany; university of technology sydney, australian research centre in complementary and integrative medicine (arccim), sydney, australia correspondence: holger cramer bmc complementary and alternative medicine , (suppl ):p question herbal medicines are particularly regarded as an alternative or com- plement to conventional pharmaceuticals in the treatment and pre- vention of respiratory tract infections (rti). the purpose of this review was to identify evidence for herbal therapy in the treatment of rti concerning effectiveness and safety. methods medline/pubmed, scopus and the cochrane library were searched through february .only randomized controlled trials bmc complementary and alternative medicine , (suppl ): page of comparing herbal therapy with no treatment, placebo or any pharmaceutical medication in children and adolescents (age to years) with rti were considered to be eligible. results eleven trials with . participants were included. no clear evi- dence for echinacea ( trials) or an herbal compound prepar- ation ( trial) in preventing rti symptoms was found. meta- analysis revealed evidence for efficacy (responder rates: risk ratio [rr] = . ; % confidence interval [ci], . to . ; p < . ; heterogeneity: i = %; χ = . ; p = . ) and safety (patients with adverse events: rr = . ; % ci, . to . ; p = . ; het- erogeneity: i = %; χ = . ; p = . ) of pelargonium sidoides in treating respiratory tract infection symptoms compared to pla- cebo ( trials). conclusion due to the heterogeneity of the included studies no concrete conclu- sion on preventive effects of echinacea could be drawn so far. in case of pelargonium sidoides a performed meta-analysis revealed moderate evidence for efficacy and safety in the treatment of re- spiratory tract infections in children. p a systematic review and meta-analysis of mindfulness-based stress reduction for treating low back pain dennis anheyer , heidemarie haller , romy lauche , gustav dobos , holger cramer department of complementary and integrative medicine, kliniken essen mitte, university of duisburg-essen, essen, , germany; university of technology sydney, australian research centre in complementary and integrative medicine (arccim), sydney, australia correspondence: holger cramer bmc complementary and alternative medicine , (suppl ):p question mindfulness-based stress reduction (mbsr) is frequently used in treating pain conditions. while meta-analyses on mbsr for chronic pain have been conducted, no meta-analysis specifically for low back pain is available. methods medline/pubmed, scopus, the cochrane library, and psycinfo were screened through june . only randomized controlled trials (rcts) were included when they assessed the effects of mbsr in pa- tients with a diagnosis of low back pain. usual care (no specific treat- ment) or any active treatments were acceptable as control interventions. for each outcome, standardized mean differences (smd) and % confidence intervals (ci) were calculated. risk of bias was assessed using the cochrane risk of bias tool. primary outcome measures were pain intensity and pain disability. health-related qual- ity of life, pain acceptance, mindfulness, and safety were defined as secondary outcomes. results seven rcts, involving low back pain patients, proved eli- gible for review. compared to usual care, mbsr was associated with short-term improvements in pain intensity ( rcts; mean difference (md) = - . points on a numeric rating scale; %ci = - . ,- . ; standardized mean difference (smd) = - . %ci = - . ,- . ) and physical functioning ( rcts; md = . ; %ci = . , . ; smd = . %ci = . , . ) that were not sus- tained long-term. between-group differences in disability, mental health, pain acceptance and mindfulness were not significant at short- or long-term follow-up. compared to an active compara- tor, mbsr was not associated with any significant differences in short- or long-term outcomes. no serious adverse events were reported. conclusions there is promising evidence of short-term efficacy and safety of mbsr in low back pain patients. while further rcts with larger sam- ple sizes and longer follow-up periods are needed to underpin these results, mbsr can be recommended as an adjunct intervention for patients with chronic low back pain. p chinese herbal therapy compared with cryotherapy in the treatment of chronic cervicitis and cervical erosion: a randomized controlled trial hoda azizi , nayereh khadem , malihe hassanzadeh , nazanin estiri , hamideh azizi , fatemeh tavassoli , marzieh lotfalizadeh , reza zabihi , habibollah esmaily , , department of complementary medicine, mashhad university of medical sciences, mashhad, , iran, islamic republic of; department of medical imaging, razavi hospital, mashhad, , iran, islamic republic of; mashhad university of medical sciences, department of biostatistics, mashhad, iran, islamic republic of correspondence: hoda azizi bmc complementary and alternative medicine , (suppl ):p background chronic cervicitis is one of the common disorders in daily practice. we aimed to compare the effectiveness and safety of chinese herbal medicine in comparison with cryotherapy in the treatment of chronic cervicitis and cervical erosion. materials and methods seventy women with cervicovaginal smears class i or ii without a papilloma or cervical intraepithelial neoplasia who referred to gynecology clinic of imam reza hospital and qaem hospital, mash- had, iran entered the study. the experimental group received chin- ese herbal treatment and the control group received cryotherapy. the main outcome measures were the number of treated patients, the time of recovery and side effects. all subjects were evaluated for study outcomes at hours after treatment, week , days after the end of menstruation, weeks and . results seventeen and patients were treated in experimental group at days and after intervention while none of the control group showed treat- ment at those times. the number of treated patients were vs in ex- perimental and control groups days after next menstruation (p < . ); vs. , weeks after treatment (p < . ); and vs. , weeks after treatment (p < . ). one patient in the experimental group vs. patients in the control group did not answer to the treatment (p < . ). the median (interquartile range) for time to treatment response was ( ) days in the experimental group and ( ) in the control group (p = . ). side effects including spotting, hypogastric pain, fever and yellow va- ginal discharge were observed in patients in the experimental group vs. patients in the control group (p = . ). the complete cure was observed in . % of patients in the experimental group vs. . % in the control group (p < . ). conclusions chinese herbal therapy is suggested to be better tolerated and more successful with less side effects comparing to cryotherapy for women with chronic cervicitis. trial registration: irct n p the effect of acupuncture on refractory chest pain of patients with patent coronary angiogram: a randomized controlled trial hoda azizi , mahmoud mohammadzadeh shabestari , reza paeizi , masoumeh alvandi azari , hamidreza bahrami-taghanaki , reza zabihi , hamideh azizi , habibollah esmaily department of complementary medicine, mashhad university of medical sciences, mashhad, , iran, islamic republic of; department of cardiology, mashhad university of medical sciences, mashhad, iran, islamic republic of; school of medicine, mashhad university of medical sciences, mashhad, iran, islamic republic of; department of medical imaging, razavi hospital, mashhad, , iran, islamic republic of; department of gynecology, mashhad university of medical sciences, mashhad, iran, islamic republic of; department of biostatistics, mashhad university of medical sciences, mashhad, iran, islamic republic of correspondence: hoda azizi bmc complementary and alternative medicine , (suppl ):p bmc complementary and alternative medicine , (suppl ): page of background five percent of patients with acute coronary syndrome and % of patients with stable angina suffer from refractory chest pain while their angiogram is patent which indicates no need for invasive inter- ventions such as percutaneous coronary intervention or coronary ar- tery bypass grafting. we aimed to investigate the effect of acupuncture on the chest pain of those patients. materials and methods forty patients with typical angina pectoris and patent coronary angiogram, whose chest pain was persistent despite medical treat- ment in maximum dosage, entered the study. they were randomly assigned in groups. the experimental group received acupuncture treatment times a week plus medication, while the control group received medication alone for weeks. all patients were fallowed up weeks after the end of intervention. the intensity of chest pain ac- cording to visual analogue scale (vas) and canadian cardiovascular society grading system (ccs), the number of weekly episodes of chest pain, the length of each pain episode and changes in st-t seg- ment of electrocardiography were recorded at baseline, week and week . results the mean (sd) of vas score decreased from . ( . ) pre-treatment to . ( . ), . ( . ) and . ( . ) at week , and in the experimental group vs. . ( . ) pre-treatment to . ( . ), . ( . ) and . ( . ) in week , and in the control group (p < . ). the ccs score de- creased in patients in experimental group vs. patients in control group at week (p = . ), vs. at week (p = . ), and vs. at week (p = . ). the mean (sd) of the number of weekly epi- sodes of chest pain decreased from . ( . ) pre-treatment to . ( . ), . ( . ), and . ( . ) at week , and in the experimental group vs. . ( . ) pre-treatment to ( . ), . ( . ) and . ( . ) in week , and in the control group (p = . ). the mean (sd) of the length of each pain episode decreased from . ( . ) minutes pre-treatment to . ( . ), . ( . ), and . ( . ) mi- nutes at week , and in the experimental group vs. . ( . ) mi- nutes pre-treatment to ( . ), . ( . ) and . ( . ) minutes in week , and in the control group (p = . ). no change was seen in the st-t segments of patients" electrocardiographs in both groups. the mean (sd) of systolic blood pressure changed from ( . ) pre-treatment to . ( . ), . ( . ) and . ( . ) at week , and in the experimental groups vs. . ( . ) pre-treatment to . ( . ), . ( . ) and . ( . ) at week , and in the con- trol group (p < . ). conclusion the intensity of chest pain, the number of weekly episodes of chest pain and the length of each pain episode decreased significantly by acupuncture treatment. results of this study suggests that acupunc- ture could help as an adjuvant therapy in the management of chest pain of patients with patent coronary angiogram. trial registration: irct n p methodological issues regarding the development of individualizing whole medical system interventions erik baars, anja de bruin, anne ponstein university of applied sciences leiden, leiden, ck, netherlands correspondence: erik baars bmc complementary and alternative medicine , (suppl ):p purpose in conventional medicine evidence-based, group-oriented protocols and guidelines are considered to guarantee the quality of interven- tions for conventional indications. however, whole medical system (wms) approaches lack this group-oriented focus and are character- ized by a highly individualized diagnostic and therapeutic approach. thus, other instruments than the group-oriented protocols and guidelines are requested to allow for guideline developments and quality assurance. methods the development of two wms (anthroposophic medicine) healthcare programs for patients with cancer and depression, and the literature on wmss, complex interventions and individualization in therapeutic processes was analyzed. results the core elements of the wms individualizing interventions are: ( ) a set of consensus and evidence-based treatment phases, treatment goals per phase and therapies per goal; ( ) professionals with trained system thinking and reflection skills who are able to judge the whole, complex and unique situation of the patient leading to individualization in diagnostics and treatments. additionally they are able to reflect on therapy progress and steer the therapy process accordingly. conclusions the quality of individualizing wms interventions cannot be guaran- teed by the same approach as used in group-oriented protocols and guidelines. they require identification of a set of treatment phases and related goals and therapies, and specifically trained professional who are able to rationally choose the best option from the redun- dant set of treatment options. individualization of wms interventions thus largely depends on professional clinical reasoning. p complementary medicine and lifestyles in tuscany: a comparative study sonia baccetti , mariella di stefano , elio rossi , fabio firenzuoli , sergio segantini , maria valeria monechi , fabio voller centre of acupuncture and traditional chinese medicine, tuscan network for integrative medicine, florence, , italy; tuscan network of integrative medicine- region of tuscany, florence, italy; regional health agency of tuscany, florence, italy correspondence: sonia baccetti bmc complementary and alternative medicine , (suppl ):p background according to international literature, users of cm are more active, less overweight and have healthier lifestyles. aim to evaluate the lifestyle of patients of cm public clinics in tuscany and compare it with general data of the surveillance system multi- scopo in tuscan population (istat ) adjusted for sex and age. methods in the tuscan network of integrative medicine in co-operation with the regional health agency of tuscany has distributed to , patients (age > ) in public clinics of cm, anonymous questionnaires on lifestyles, that included questions on exercise, smoking, diet, alcohol. results the sample was divided according to educational level (medium- high and medium-low). all the subjects who used cm had less sed- entary habits (statistically significant) compared to controls in both groups ( % versus . % medium-high educational level, . % ver- sus % medium-low educational level). also the consumption of fruit and/or vegetables was significantly higher in groups who used cm ( , % versus , % medium-high and , % versus , % medium-low). in the subjects with low educational level, smoking was significantly lower ( , % versus , %) and obesity was higher ( . % versus . %) compared to the control group. finally, in the subjects with low education who used cm prevalence of drinkers at risk was higher compared to tuscan population ( , % versus , %). conclusions contrary to what literature reports, lifestyles of our sample were not better in alcohol consumption and obesity. cm patients ate more fruit and vegetables, were moderately less sedentary than tuscan population and smoked less compared to the control group. bmc complementary and alternative medicine , (suppl ): page of keywords: lifestyles; complementary medicine (cm); public regional healthcare system p expectation for acupuncture treatment (eat): scale development and performance jürgen barth, alexandra kern, sebastian lüthi, claudia witt institute for complementary and integrative medicine, university hospital zurich, zurich, , switzerland correspondence: jürgen barth bmc complementary and alternative medicine , (suppl ):p background high expectations about acupuncture might contribute to larger treatment effects (prady et al., ). however, problems in the as- sessment are well known: ) floor or ceiling effects lower variance; ) expectation measures include general beliefs about complementary medicine; ) construct validity of expectation measures remains un- clear since assessment strategies were often ad hoc developed. we aimed to develop an expectation scale for acupuncture with good re- liability, convergent validity (other expectation scales) and distinct- ness to more general constructs (like optimism). methods in this web based survey we included participants with pain. all participants filled in nine statements on expectations of which five were used for the final version of the expectation for acupuncture treatment scale (eat). convergent validity was tested against the acupuncture expectation scale (aes), life orientation test (lot), pa- tient health questionnaire (phq), sensitivity to medication (bmq-d), and other measures. results factor analysis showed a one factor solution of the eat items and re- liability was high (alpha = . ). the correlation with another meas- ure of patient expectation (aes) was high. moderate correlation of . to . were found for lot, phq and bmq-d. no association was present for the personality characteristics neuroticism and openness to experience. re-test reliability after one week was good (icc > . ). conclusion the eat seems to be a reliable, valid and very feasible measure for assessing acupuncture expectations in pain patients. the items can be adapted for other treatments and an english version is available to be tested. p changing expectation for acupuncture treatment (cheat) jürgen barth, anja zieger, fabius otto, claudia witt institute for complementary and integrative medicine, university hospital zurich, zurich, , switzerland correspondence: jürgen barth bmc complementary and alternative medicine , (suppl ):p background changing expectations by verbal suggestions might improve acu- puncture effects (suarez-almazor et al., ). however, designing appropriate communication for verbal suggestions might be a diffi- cult task. web based experiments can be a tool to develop effective suggestions to change expectations. methods in this web based study we randomly informed subjects in two dif- ferent ways with visual and written materials about the benefits of acupuncture: in the high expectation group (he) the subjects were told that acupuncture leads to a substantial decrease in symptoms in about % of cases. in the low expectation group (le) the partici- pants were told, that about half of the patients get better but the specific effect of acupuncture is still unclear. we included subjects with an adequate information processing (memory task and a mini- mum reading time of seconds). the strength of the message was tested with a manipulation check and the expectation for acupunc- ture treatment (eat) scale was the primary outcome. results of subjects were included in the analysis (having pain n = ; he n = , le n = , having no pain n = ; he n = , le n = ). manipulation check was positive. for pain patients the expecta- tions did not differ between he and le (p > . ). for no pain subjects expectation differed between he and le (p = . ). this effect was ro- bust effect after controlling for sex, age, earlier acupuncture experi- ence, and health status. conclusion web experiments can help to make empirically based decisions on how to create persuasive messages for verbal suggestions on expec- tations. high dose communication including audio visual information about acupuncture might be needed for patients to have similar ef- fects like in healthy subjects. p mind-body therapies for eating disorder prevention: a systematic review and meta-analysis ariel beccia, corina dunlap, brendan courneene national university of natural medicine, helfgott research institute, portland, or, united states correspondence: ariel beccia bmc complementary and alternative medicine , (suppl ):p question eating disorders represent a significant public health concern. the challenges associated with treatment highlight the importance of prevention. calls for increased efficacy of such programs have led to the development of novel approaches, including those incorporating mind-body therapies. the purpose of this review is thus to assess the effectiveness of mind-body therapies in promoting protective factors and reducing risk factors associated with eating disorders. methods medline, psychinfo, cinahl, scopus, and amed were screened through november . randomized controlled trials (rcts) com- paring mind-body therapies to dissonance-based or assessment-only controls were analyzed. outcome measures included standardized measures of protective and risk factors associated with eating dis- order development. for each outcome, standardized mean differ- ences (smd) and % confidence intervals (ci) were calculated, if at least studies assessing this outcome were available. as a measure of heterogeneity, i was calculated. data synthesis was completed using revman software and risk of bias was assessed using the cochrane risk of bias tool. controlled before-and-after and pre-post studies were also eligible, although were not included in the meta- analysis. results out of identified studies, trials ( participants) were in- cluded in the meta-analysis, evaluating meditation and/or mindfulness-based therapies ( trials), mirror-exposure therapy ( trials,) yoga ( trials), and autogenic training ( trial). mind-body ther- apies may significantly reduce body image concern (smd - . ; % ci - . to - . ), negative affect (smd - . ; % ci - . to - . ), and improve body appreciation (smd . ; % ci . to . ) as compared to assessment-only control, and may significantly improve self-esteem (smd . ; % ci . to . ) as compared to dissonance-based controls. no significant differences were found for any other outcome measure. non-randomized studies ( partici- pants) were identified; interventions included mindfulness-based therapies and yoga, and all reported significant changes on included outcome measures. conclusions mind-body therapies may be an effective form of eating disorder prevention. based the combined data from rcts, there is moder- ate evidence for the effectiveness of mind-body therapies in redu- cing risk factors and promoting protective factors associated with eating disorders. the main limitations of the studies were the lack of blinding and the variations in included interventions. a meta-analysis of outcome measures assessed at -month follow-up is currently be- ing conducted. bmc complementary and alternative medicine , (suppl ): page of p chilean national health survey - : chronic pain in adults and the use of complementary and alternative therapies (cam) paula bedregal , alvaro passi , alfredo rodríguez , mayling chang , soledad gutiérrez public health. unit of integrative medicine and health, pontificia universidad catolica de chile, santiago, , chile; family medicine, pontificia universidad catolica de chile, santiago, , chile; unit of integrative medicine and health, pontificia universidad catolica de chile, santiago, , chile; integrative medicine unit. casr, hospital dr. sótero del río, santiago, chile correspondence: paula bedregal bmc complementary and alternative medicine , (suppl ):p chronic pain is a public health problem. about . % ( % cis . % to . %) of population is estimated to have this condition. one third of chilean population use cam. there is no current data about use of cam in people with chronic pain and its perceived benefits nei- ther in chile nor in latin america. methods a cross-sectional representative national survey of adults (≥ years old) was interviewed directly about their use of cam. we analyzed the frequency of cam use, the types of cam used, the per- ceived efficacy and factors influencing its use. results prevalence of chronic pain in chile is . % ( % cis: . - . %). prevalence of cam use in those with chronic pain is . %, in those without chronic pain is . % (p = . ). the most common type of cam used is herbal therapies ( . %), followed by homeopathy ( . %). the use of cam in those with chronic pain is associated with better educational level (> years of studies); women ( . % vs . %; p = . ); being elderly ( . ± . vs . ± . years old; p = . ); and perception of poor health. perceived efficacyis better with herbal therapies ( %), reiki ( . %) and bach’s flowers ( %). adjusted by educational level, only gender and age is associated to use of cam among adult chilean population with chronic pain. conclusion the use of cam in chronic pain patients is higher than the general population. most felt that it improved their pain. cam may have a role in the management of chronic pain in particular herbal therapies. p therapeutic sensations show high similarity between different body-oriented therapies florian beissner somatosensory and autonomic therapy research, hannover medical school, hannover, , germany bmc complementary and alternative medicine , (suppl ):p question complex bodily sensations that patients experience during thera- peutic interventions are a common phenomenon in many body- oriented therapies. despite the striking similarity of sensations across different therapy systems, no attempt has been made so far to understand their characteristics and clinical relevance from a per- spective that transcends the borders between these systems. methods we searched the pubmed database for the terms therapeutic sensa- tion, deqi, needling sensation, enhanced touch sensation, acupunc- ture sensation, propagated sensation, and alternative spellings thereof. we identified studies of which we included those that reported verbal descriptors together with their relative frequencies, i.e. information on how often each descriptor had been used by sub- jects to describe their ts. to reflect both within- and between-study variance we first calculated relative frequencies for each of the de- scriptors used in the single studies. we then multiplied these fre- quencies by the weighting factor n/ , where n was the number of studies reporting the descriptor at least once. the results were trans- formed into a word cloud. results our final sample consisted of studies which comprised different acupuncture modalities (manual, electric, auricular, laser), tactile stimulation, focused ultrasound as well as various sham or placebo interventions. we found that the terms which are most frequently used to describes therapeutic sensations across various fields were numbness ( . ), tingling ( . ), and soreness ( . ), followed by heaviness ( . ), dull pain ( . ), aching ( . ), fullness ( . ), sharp pain ( . ), pressure ( . ), distention ( . ), warmth ( . ), throbbing ( . ) and spreading ( . ), where the numbers in brackets denote the product of mean and weighting factor. conclusions sensations experienced during therapeutic interventions are highly similar in their qualitative nature across different modes of stimula- tion and therapies. since no generally accepted scientific term exists for this phenomenon, we propose the term therapeutic sensations (ts) for it. ts may be a thread linking seemingly unrelated therapy systems and even explain some pre-scientific concepts, like the me- ridians of chinese medicine or the idea of some form of energy ex- change between practitioner and patient. p acupuncture-enhanced psychotherapy for painful endometriosis: the role of anxiety and the anterior hippocampus florian beissner , christine preibisch , annemarie schweizer-arau , roxana popovici , karin meissner somatosensory and autonomic therapy research, hannover medical school, hannover, , germany; department of neuroradiology, technische universität münchen, munich, germany; practice for psychotherapeutic medicine, diessen, germany; department of gynecologic endocrinology and fertility disorders, heidelberg university women’s hospital, heidelberg, germany; institute of medical psychology, ludwig-maximilians-university, munich, germany correspondence: florian beissner bmc complementary and alternative medicine , (suppl ):p question endometriosis is a gynecological disorder affecting - % of all women in their reproductive age. previous studies have shown an as- sociation between pelvic pain and trauma. we wanted to know if pa- tients with painful endometriosis may benefit from a treatment combining psychotherapy for trauma release with acupuncture and related techniques. methods patients with severe painful endometriosis (maximum pain: . ± . , average pain: . ± . on a -point numeric rating scale) were included in the study. resting-state functional magnetic resonance imaging was used to assess brain connectivity of these patients at baseline, after three months of therapy and after six months. the analysis was focused on the hippocampus. results we identified a cortical network comprising of the right anterolateral hippocampus – a region modulating the hypothalamic-pituitary- adrenal (hpa) axis – and somatosensory, viscerosensory and intero- ceptive brain regions. regression analysis showed that reduction in connectivity of this network predicted therapy-induced improvement in patients' anxiety in the treatment group, but not in the control group. after six months, when controls had received delayed inter- vention, both groups showed this association. conclusions patients with a history of endometriosis, who suffer from pelvic pain, can obtain substantial benefit from acupuncture-enhanced psycho- therapy. we have identified a putative mechanism underlying this potent combination of therapies in treating symptoms of endometri- osis. our results emphasize the importance of trauma as a central factor in the etiology of pelvic pain and endometriosis. bmc complementary and alternative medicine , (suppl ): page of p dna targeted therapy for prostate, ovarian and pancreatic cancers sylvie beljanski the beljanski foundation, new york, ny , united states bmc complementary and alternative medicine , (suppl ):p purpose research from m. beljanski and d. malins, has demonstrated that vir- tually all cancers are associated with physical damage to cellular dna caused by the binding of carcinogens in our environment. this damage involves destabilization of the dna double helix (breakage of the hydrogen bonds that hold the two strands together) and dis- order in the chemical integrity of the dna building blocks (breakage of covalent bonds). despite being well established scientifically, dna damage associated with destabilization and disorder is not widely appreciated. this is re- markable because these physical changes are found in virtually all types of cancer from all individuals. destabilization and disorder ap- pear to be the underlying causes of cancer that precede mutations and indeed enable the accumulation of mutations. this is a powerful contribution to our understanding of carcinogenesis, but beljanski went a step further. he identified compounds in plant extracts that specifically target destabilized dna and prevent proliferation of can- cer cells by disrupting dna duplication (pao pereira and rauwolfia vomitoria). methods mtt assays for inhibition of cell proliferation, parp cleavage for apoptosis, orthotopic grafts for tumors, and bioluminescence for assessing inhibition of tumor growth in vivo. results the extracts are active against prostate, ovarian and pancreatic can- cers in vitro and in vivo. they are effective alone and are synergistic with chemotherapy drugs, providing a dose reduction effect. the ex- tracts do not induce negative side effects of their own. conclusions the discovery of dna destabilization is presented and the activity of the extracts against three cancers is described. p music listening to reduce anxiety among older adults in the emergency department laura belland , laura rivera-reyes , ula hwang family medicine, newyork-presbyterian, new york, ny , united states; emergency medicine, icahn school of medicine at mount sinai, new york, ny, united states correspondence: laura belland bmc complementary and alternative medicine , (suppl ):p background a visit to the emergency department (ed) may be distressing and anxiety-provoking for older adults (age ). the objective of this pilot study was to evaluate the effect of music listening on anxiety levels in older adults in the ed. methods this was a pilot study at the mount sinai hospital during april and may . inclusion criteria were english-speaking adults who were not deaf. subjects were randomly assigned to standard care (control) or standard care with - minutes of music listening that commenced immediately after enrollment. intervention subjects were provided headphones and an ipad with pre-downloaded music (choice of classical, jazz, new age, chinese traditional, or latin guitar). anxiety levels were measured by the spielberger state trait anxiety inventory (stai) which was conducted at enrollment and after one hour. results a total of patients were screened during study hours; of these patients, a total of ( %) were enrolled. when comparing control (n = ) vs. intervention subjects (n = ), there were no significant differences in initial stai scores ( . ± . vs . ± . , p = . ). however, when comparing scores one hour after enrollment, the mean reduction in stai scores of the intervention subjects was sig- nificantly greater than those of the control subjects (- . ± . vs - . ± . , p = . ). conclusions these pilot results suggest that music listening may be an effective, non-invasive tool for reducing anxiety among older adults in the ed. p is an anthroposophic curriculum for children with type diabetes mellitus (t dm) different from usual care? bettina berger , , dominik sethe , , dörte hilgard , peter heusser , theory of medicine, integrative and anthroposophic medicine, witten/ herdecke university, herdecke, germany; institute of integrative medicine, witten/herdecke university, herdecke, germany; community hospital, herdecke, germany correspondence: bettina berger (bettina.berger @googlemail.com) bmc complementary and alternative medicine , (suppl ):p aim development of the curriculum as first part of a complex evaluation of an anthroposophic education programme for children between and years with t dm. background t dm is the most common metabolic disease in childhood. patients have to substitute insulin by daily injections or insulin-pump. the standard of diabetes treatment includes educational programmes to enable patients to self-manage their insulin-substitution. however, these programmes are focused on blood-sugar management only, and therefore might miss the developmental needs of the children (f.e. growing independency from parents). the anthroposophic edu- cational programme of herdecke (hekidi) focus on these needs of children to enable them to manage their t dm. the training programme at the community-hospital herdecke has been approved by the german diabetes association as a therapy and training facility for stage pediatrics and treats children in various school for- mats per year [ ]. to compare this programme to others, anthroposo- phicaspects of curriculum have to be described. methods hospitations, interviews with most people responsible for the programme and content analysis of interviews and teaching mate- rials to identify intended learning aims, contents and methods of the curriculum, following the guidelines of tidier [ ]. definition of main learning aims and finalisation of the curriculum with the person re- sponsible for the programme. results the curriculum of hekidi can be presented. it follows the standard curriculum in germany [ ], but the learning aims for children within hekidi differ, they might also learn to: – feel accepted in their personal developmental or diabetes- related needs, consented as an individual treatment aim be- tween doctors, parents and themselves – develop self-efficacy in diabetes-related but although other fields – understand their t dm as life-long consciouness-related task – develop their motoric abilities f.e. to foster their will – develop their artistic and communicative abilities to perceive and express emotions – develop their social competencies f.e. to use the social network as support. the curriculum focus on individualised treatment, through the estab- lishment of adult mentors, suffering on t dm themselves, serving as role model, supporting the children in their daily tasks. conclusion the hekidi-programm differs from standard programmes. how far the hekidi programme is better to foster self-efficacy of children has bmc complementary and alternative medicine , (suppl ): page of to be investigated in an interventional study. references . kienle gs, meusers m, quecke b, hilgard d. patient-centered diabetes care in children: an integrated, individualized, systems-oriented, and multidisciplinary approach. glob adv health med. mar; ( ): - . hoffmann tc, et al. ( ). better reporting of interventions: template for intervention description and replication (tidier) checklist and guide. bmj : . . lange k,swift p, pankowska e,danne t ( ). diabetes education in children and adolescents. pediatric diabetes a; : - p non-specific mechanisms in orthodox and complementary/ alternative management of back pain: recruitment rates and baseline data felicity bishop , miznah al-abbadey , katherine bradbury , dawn carnes , borislav dimitrov , carol fawkes , jo foster , hugh macpherson , lisa roberts , lucy yardley , george lewith university of southampton, psychology, southampton, united kingdom; queen mary university of london, blizard institute, london, united kingdom; university of southampton, southampton, united kingdom; university of york, health sciences, york, united kingdom correspondence: felicity bishop bmc complementary and alternative medicine , (suppl ):p question five domains of non-specific treatment components may influ- ence patient outcomes: therapeutic relationship, healthcare en- vironment, incidental treatment characteristics, patients" beliefs and practitioners" beliefs. this study investigates the relation- ship between non-specific treatment components and low back pain (lbp) outcomes in physiotherapy, osteopathy, and acupuncture. methods in a major prospective questionnaire-based study, public (nhs) and private-sector practitioners were recruited by uk-wide mail- shots; practitioners then give invitation packs to eligible adult pa- tients. practitioners and patients complete validated, reliable, questionnaires measuring non-specific treatment components, mediators and outcomes at: baseline (after first consultation for new episode of lbp), during treatment ( -weeks post-baseline) and outcome ( -months post-baseline). recruitment is ongoing; rates and preliminary baseline data from the first months were analysed descriptively. results % of invited acupuncturists have enrolled (n = ), % of osteopaths (n = ), % of physiotherapists (n = ). more acupuncturists and os- teopaths have been recruited from private settings; more physiother- apists have been recruited from the nhs. acupuncturists have recruited on average patient each, osteopaths , and physiothera- pists . patient recruitment rates are higher in nhs than private set- tings. patients' baseline disability is comparable across therapies (roland morris questionnaire scores: acupuncture m = . , osteop- athy m = . , physiotherapy m = . , p = . ). baseline disability is higher in nhs patients (m = . ) than private patients (m = . , p = . ). conclusions recruiting practitioners has been challenging, particularly acupunc- turists and nhs-based cam practitioners. this may be because acu- puncturists treat fewer lbp patients than previously and nhs commissioning of these therapies has decreased. higher patient re- cruitment rates in nhs settings may reflect different patient popula- tions across sectors. p exploring change processes in acupuncture for back pain: a qualitative thematic analysis felicity bishop , michelle holmes , george lewith , lucy yardley , paul little , cyrus cooper department of psychology, university of southampton, southampton, so bj, united kingdom; department of medicine, university of southampton, southampton, so bj, united kingdom correspondence: felicity bishop bmc complementary and alternative medicine , (suppl ):p purpose to explore patients' experiences of acupuncture for back pain and identify psychosocial processes that might support clinical changes. methods we conducted a qualitative study using semi-structured interviews and thematic analysis. interviewees were purposively sampled from a nationwide longitudinal questionnaire study (n = ). we de- liberately interviewed men (n = ) and women (n = ), of varying ages ( – years), receiving acupuncture in diverse settings ( acu- puncture clinics; physiotherapy; pain clinic; general practice), with different adherence levels ( attended all appointments). we also sampled for diversity in outcomes (positive/negative/no change in disability/pain/wellbeing). results participants described how, on starting treatment, they were desper- ately hoping that acupuncture would improve their ability to func- tion and enjoy their lives despite back pain, and so they typically cared little about how it might work. they expressed concerns about acupuncture needles and side-effects, and trusted acupuncturists who made them feel safe, explained the treatment clearly, and made them feel special and listened to. participants felt more in control when acupuncturists created space for dialogue and this was import- ant because they perceived little control over pain and conventional treatment options. some but not all participants experienced bene- fits including: pain relief, better functioning, and feeling happier or less depressed. as a result of their experiences, they described be- lieving that acupuncture can work to produce real, if short-term, benefits. conclusions clinical changes in back pain as a result of acupuncture may be sup- ported by therapeutic relationships that empower patients and at- tend to their concerns. p biotechnological approaches for studying the interaction between endophytic bacteria and echinacea spp. patrizia bogani, valentina maggini, eugenia gallo, elisangela miceli, sauro biffi, alessio mengoni, renato fani, fabio firenzuoli department of biology, university of florence, sesto fiorentino, florence, , italy correspondence: patrizia bogani bmc complementary and alternative medicine , (suppl ):p purpose present work aimed to understand if distinct bacterial communities could account for the differences in the medicinal properties of two echinacea plant species by affecting their physiology and metabolism. methods axenic e. purpurea and e. angustifolia plants were infected with e. purpurea endophytes and examined for the presence of bacteria and for different physiological parameters. vap assays were performed to test bacteria effect on primary root elongation and morphology. dual bmc complementary and alternative medicine , (suppl ): page of cultures experiments between echinacea cell cultures and different bacteria were established to test the influence on both plant and bacterial cells growth. results endophytic strains tended to recolonize the host plant native niche, endophytes from stem/leaves increasing the number of leaves, or the plant weight if coming from roots. in vitro morphogenetic behav- iour indicated that the two echinacea species had a different content of endogenous plant hormones. e. purpurea was able to regenerate new shoots in culture media enriched with high content of cytoki- nins while e. angustifolia produced only clusters of undifferentiated cells (callus). vap analyses showed effects on plant root elongation and morphology depending on differences in iaa production by dif- ferent bacteria. dual cultures experiments showed that plant cells promote the growth of endophytes, these latter affecting the plant growth itself. conclusions in vitro colonization of endophytes is divergent according to their na- tive in vivo compartment. different composition in plant primary me- tabolism in the two echinacea species affect the plant-bacteria interaction modulating the production of plant metabolites, key com- pounds for colonization strictly related to the echinacea therapeutic properties. p equipment-based movement therapy in stroke rehabilitation nadine brands-guendling, peter w guendling complementary medicine, hochschule fresenius, bad camberg, , germany correspondence: nadine brands-guendling bmc complementary and alternative medicine , (suppl ):p background stroke is the third leading cause of death in germany, a leading cause of disability and a considerable cost factor in the health care system. despite a variety of specific therapies available, a recovery of impaired motor functions after a stroke is in most instances incom- plete. hence, complementary therapeutic strategies of neurological rehabilitation are needed to improve the recovery of impaired persons. objectives the aim of this study is to depict the general importance of an elec- trically driven exercise machine for arms and legs for mobility train- ing in the neurological rehabilitation. methods stroke patients randomized into an intervention group (ten sub- jects, arm and leg training) and a control group (ten subjects, physio- therapy gait training), are treated for four weeks, five times a week. in week zero and four, the patients are tested on motor performance, walking ability, physical and mental quality of life, endurance and rough movement skills. results the test of motor performance with the rivermead motor assess- ment (p = . ) and the test of rough movement skills of the arms with the box and block test (p = . ) indicate significant main ef- fects. the quality of life, which is measured by the sf- , points out a significant main effect for the physical health score (p = . ). the measurement of endurance with the -minute walk test (p = . ) and the walking ability with the dynamic gait index (p = . ) indi- cate significant differences between both groups. no noticeable out- comes appear from the testing of the walking ability with the functional ambulation categories and the mental health score of the sf- . conclusion an equipment-based mobility training seems to be beneficial for stroke patients with hemiparesis. the significance of the test series is to some extent limited due to the small sample size. the positive re- sults, however, might provide thought-provoking impulses for neuro- logical therapies. p spinal manipulation and exercise for adolescent low back pain gert bronfort , roni evans , mitch haas , brent leininger , craig schulz university of minnesota, minneapolis, mn , united states; university of western states, portland, or, united states; children's hospital and clinics of minnesota, minneapolis, mn, united states correspondence: gert bronfort bmc complementary and alternative medicine , (suppl ):p question low back pain (lbp) is a leading cause of disability worldwide. while there is a growing recognition that lbp in adolescents approximates that of adults, there has been very little research to guide therapeutic management. this trial is one of the firstto determine whether spinal manipulative therapy (smt), a commonly used complementary health approach combined with exercise therapy (et) compares with et alone, to reduce chronic lbp in the short and long term in adolescents. methods we conducted a controlled pragmatic trial with random allocation by minimization from to in two research centers (minnesota and oregon, usa). the primary outcome was participant-rated lbp at , , and weeks. secondary outcomes included patient-rated disability, quality of life (pedsql), medication use, patient and care- giver rated improvement and satisfaction. objective biomechanical outcomes were collected at baseline, , and weeks post enroll- ment by blinded examiners. results participantswere adolescents aged - years with chronic lbp, who received weeks ( - sessions) of smt et or et alone.of the enrolled patients, ( %) provided follow-up data at weeks and ( %) at and weeks. for lbp, smt et compared to et had a small advantage of percentage points ([ % ci, to ], p = . ) at the end of treatment ( weeks). larger, clinically important advantages of percentage points at weeks ([ % ci, to ]; p = . ) and percentage points at week ([ % ci, to ], p = . ) for smt et were also observed. at weeks only, smt et per- formed better than et alone in terms of low back disability (p = . ) and global improvement (p = . ). the smt et group also experi- enced significantly greater satisfaction with care than et alone at weeks , , and (p ≤ . ). there were no serious treatment- related adverse events. conclusions for adolescents with chronic lbp, adding spinal manipulation to ex- ercise was more effective than exercise alone in the long-term but not the short-term. p effect of chinese herbal decoction qinlingye extract on the pgc- α/rantes inflammatory metabolic signaling pathway in rats with uric acid-induced renal injury xiangwei bu , j wang , t fang , z shen , y he , x. zhang , zhengju zhang , dali wang , fengxian meng dongfang hospital, beijing university of chinese medicine, rheumatology, beijing, china; community health service center of yangsong town, traditional chinese medicine, beijing, china; jingzhou central hospital of hubei province, traditional chinese medicine, beijing, china bmc complementary and alternative medicine , (suppl ):p purpose to explore the effect of chinese herbal decoction qinlingye extra- ct(qlye) on gene transcription and expression of pgc- α, rantes, il- β in rats with uric acid-induced renal injury(uairi). methods spf male sd rats ( ± g) aged weeks were acclimated for week, of which were selected randomly as normal control group(ncg). rats were fed with yeast feed and adenine gavage to establish uairi model. successful models (n = ) were randomized bmc complementary and alternative medicine , (suppl ): page of into model, positive drug and high-, medium-, low-dose of qlye group (n = per group), given gavage administration of distilled water( ml.kg- ), allopurinol( . mg.kg- ) and qlye( . g.kg- , . g.kg- , . g.kg- ) everyday. after and weeks, half rats of every group were sacrificed. we used rt-pcr to detect mrna tran- scription of il- β,pgc- α,rantes in renal tissue, elisa to measure protein expression of il- βand rantes in serum, western blot and immunohistochemistry to analyze protein expression of pgc- α in renal tissue. results compared with ncg, the mrna transcription and protein expression of pgc- α in model group were lower at th and th weeks (p < . , p < . ),while rantes and il- β were higher (p < . , p < . ).compared with model group, protein expression of pgc- α in qlye groups was higher(p < . ), protein expression of rantes in medium-,low-dose groups was lower(p < . ),and mrna transcrip- tion and protein expression of il- β in qlye groups were lower(p < . ,p < . ) at the th week. at the th week, mrna transcription and protein expression of pgc- α were higher (p < . ,p < . ), whereas those of rantes were lower(p < . ,p < . ) in qlye groups,and protein expression of il- β in high-, medium-dose groups was lower(p < . ,p < . ). conclusion the mechanism of qlye ameliorating uairi may be related to regula- tion of pgc- α signaling pathway and inhibition of inflammatory metabolic injury. p sense of coherence and perception of the transcendent as contributors of catholic priests’ life satisfaction arndt büssing , klaus baumann , eckhard frick , christoph jacobs quality of life, spirituality and coping, witten/herdecke university, herdecke, , germany; faculty of theology, caritas science and christian social work, albert-ludwig university, freiburg, germany; department of psychosomatic medicine and psychotherapy, klinikum rechts der isar, technische universität münchen, munich, germany; pastoral psychology and sociology, faculty of theology paderborn, paderborn, germany correspondence: arndt büssing bmc complementary and alternative medicine , (suppl ):p background aaron antonovsky"s salutogenetic model has become one of the most important conceptual frameworks in health sciences in recent decades. less is known about catholic priests who’s global life orien- tation is their religious faith. we thus intended to analyze the influ- ence of soc, transcendence perception as a measure of (affective) spirituality, spiritual dryness as a phase of a spiritual crisis on their life satisfaction, and social support. methods this study is part of the german pastoral ministry study, an anonym- ous survey among catholic priests from out of german dio- ceses using standardized questionnaires (i.e., soc- , dses- , sds, fsozu, swls). for this analysis we relied on data of , priests with a predominantly age range from to years, and performed first correlation analyses and then regression analyses to define which of these variables may predict their life satisfaction. results the soc correlated positively with life satisfaction (swls, r = . ), transcendence perception (dses, r = . ), and social support (fsozu, r = . ), and negatively with spiritual dryness (sds, r = -. ). soc ex- plains only % of dses’s variance, and dses % of soc’s variance. stepwise regression analyses indicated that priests’ life satisfaction was predicted best by soc (beta = . , t = . , p < . ) explaining % of variance. transcendence perception (beta = . , t = . , p < . ) would add further % of explained variance, while social support (beta = . ; t = . ; p < . ) and spiritual dryness (beta = -. , t = - . , p = . ) would add both < % of further variance ex- planation, and are thus of minor relevance. conclusions for catholic priests having a meaningful life and perceiving the sa- cred in their life are relevant sources contributing to their life satis- faction, while social support was of minor relevance. p validation of the affected body image questionnaire in people with limb amputations – not satisfaction with themselves and their appearance was of relevance but dissatisfaction with living circumstances arndt büssing , ralph-achim grünther , désirée lötzke quality of life, spirituality and coping, witten/herdecke university, herdecke, , germany; helios rehazentrum bad berleburg, baumrainklinik, bad berleburg, germany correspondence: arndt büssing bmc complementary and alternative medicine , (suppl ):p purpose having an amputated limb represents a relevant turning point in life. for individuals the amputation is interference in the personal phys- ical and psychological integrity. body image changes are an import- ant consequence to be considered with regard to the adjustment process and rehabilitation after a limp amputation. this paper pre- sents the findings of the validation of the affected body image (abi) questionnaire in a sample of older patients with amputated limbs with and without phantom pain. methods cross-sectional, anonymous survey among individuals with an amputated limb using standardized questionnaires (i.e., gcps, hads, sf- , bmlss, etc.). results the mean age of the sample ( % men) is ± years; phantom pain is present on % of the cases. exploratory factor analysis of the item abi questionnaire indicated four sub-constructs explaining % of the total variance in the data, i.e., distance to own body; (intention to) change own body; (perception of being) avoided by others; dislike own body. the internal reliability of the instrument is good (cronbach’s alpha = . ). the abi scores correlated strongly with depressive states (escape from illness/affection, dissatisfaction with living situation, depressive symptoms), and moderately with dis- ability scores and low mental quality of life and life satisfaction. es- cape and dissatisfaction with living situation were the best predictors of patients’ abi scores, explaining % of variance. interestingly, it was not patients’ satisfaction with themselves and their appearance, or whether they mind the look of their body at all, which showed significant differences for the abi perceptions, but their dissatisfac- tion with their living circumstances. the prevalence of phantom pain had no relevant influence on abi scores. while most amputees en- rolled in this study did not perceive relevant abi, distance from the own body was perceived with high scores by %, while the intention to change their body was scored high by %. conclusions the -item instrument is a practical instrument with good internal consistency and plausible associations with external measures. it measures how individuals feel about their changed body image and how they deal with the situation after an amputation. the scale may have an important strength to address more closely the attitude and the living conditions of amputees and their complex adjustment process following an amputation. bmc complementary and alternative medicine , (suppl ): page of p randomized clinical trial to treat patients with chronic back pain: a comparison of the efficacy of yoga, eurythmy therapy and standard physiotherapy arndt büssing , sonny jung , désirée lötzke , daniela r. recchia , sibylle robens , thomas ostermann , , bettina berger , josephin stankewitz , matthias kröz , , , mika jeitler , , christian kessler , , andreas michalsen , quality of life, spirituality and coping, witten/herdecke university, herdecke, , germany; research methodology and statistics in psychology, witten/herdecke university, witten, germany; institute of integrative medicine, witten/herdecke university, herdecke, germany; research institute havelhöhe, berlin, germany; internal medicine, havelhöhe hospital, berlin, germany; clinical naturopathy, institute for social medicine, epidemiology and health economy, charité – university medicine, berlin, , germany; internal and complementary medicine, immanuel hospital berlin, berlin, germany correspondence: arndt büssing bmc complementary and alternative medicine , (suppl ):p purpose to treat patients with chronic low back pain, multimodal approaches are seen as essential. while particularly physical training is increas- ingly recommended, there are several other important interventions which might be effective, too. we thus aimed to compare the effect- iveness of yoga, eurythmy therapy (eut) and physiotherapeutic exer- cises (phye). methods in a three-arm multicenter rct we treated patients with chronic low back pain for weeks in group sessions ( minutes once per week), with a further week follow-up phase. additionally, min. daily home exercises were recommended. primary out- come was patients’ physical disability (rmds); secondary outcome variables were pain intensity, health-related quality of life (sf- ), life satisfaction (bmlss), positive mood (asts), stress perception (pss), depression (ces-d), self-regulation (sr), mindfulness (fmi), inner coherence (ics), and inner correspondence and peaceful harmony (icph). results after multiple imputations of missing data, data of patients were used for statistical analyses (yoga, n = ; eut, n = ; phye, n = ). there were no significant baseline differences. in all groups, rmds and pain intensity scores decreased significantly within the weeks, while quality of life increased. there were no significant differences between the three groups for the pain variables, while for sf- ’s mental health component eut had a significant benefit compared to phye (ß = . , p = . ). within the groups, we see significant im- provements of bmlss, asts, pss, ces-d, ics and icph scores for yoga and eut, but not for phye, while there were no significant im- provements for fmi and sr. conclusions compared to the ‘gold standard’ phye, the two rather "meditative" in- terventions eut and yoga were similar effective to reduce pain- associated affections. however, there was a significant benefit for eut to improve sf- 's mental health component compared to yoga and phyt. p influence of lifestyle on hypertension, diabetes, and dyslipidemia based on korea community health survey chunhoo cheon, bo h jang, seong g ko, ching w huang, yui sasaki, youme ko kyung hee university, seoul, , south korea correspondence: chunhoo cheon bmc complementary and alternative medicine , (suppl ):p background these days, non-communicable diseases have received increasing at- tention. hypertension, diabetes mellitus, and dyslipidemia which are known to be closely related to lifestyle were defined lifestyle related disease. the present study was designed to investigate the influence of lifestyle on hypertension, diabetes, and dyslipidemia. methods each determinants of lifestyle related disease include following risk factors. lifestyle determinants: alcohol consumption, smoking, phys- ical activities, dietary patterns. sociodemographic determinants: age, sex, residential area, household income, education. psychological de- terminants: subjective perception of stress. comorbidity determi- nants: obesity, hypertension, diabetes mellitus, dyslipidemia. the associations between diagnosis of hypertension, diabetes mellitus, dyslipidemia and lifestyle factors were analyzed using simple and multiple logistic regression analysis. results more than hours of sedentary time, eating food bland showed sig- nificant association with hypertension. smoking and more than hours of sleep showed significant association with diabetes. dyslip- idemia was significantly associated with more than hours of seden- tary time. high risk drinking showed positive correlation with hypertension and negative correlation with diabetes. pack years of smoking had negative correlation with hypertension. breakfast skip- ping showed negative correlation with hypertension and diabetes, and positive correlation with dyslipidemia in - years. more than hours of sedentary time were positively correlated with hyperten- sion, diabetes, and dyslipidemia. conclusions lifestyle has considerable influence on hypertension, diabetes and dyslipidemia, and these are also risk factors for other disease. there- fore, it is important to manage lifestyle for preventing lifestyle dis- ease. further studies will be required to clearly define the causal relationship between lifestyle and diseases. p the personal is political: influences on gp coping and resilience anna cheshire , damien ridge , john hughes , david peters , maria panagioti , chantal simon , , george lewith , university of westminster, london, w w uw, united kingdom; royal london hospital for integrated medicine, london, united kingdom; institute of population health, manchester, united kingdom; the banks and bearwood medical centres, bournemouth, united kingdom; royal college of general practitioners, london, united kingdom; university of southampton, southampton, united kingdom correspondence: anna cheshire bmc complementary and alternative medicine , (suppl ):p background neoliberal work policies, austerity, nhs restructuring and increased gp consultation rates, provide the backdrop against increasing re- ports of gp burnout and a looming shortage of gps. aim to explore gps experiences of workplace challenges and stresses and their coping strategies, particularly focusing on understanding the impact of nhs workplace change. design study design was qualitative, with data collected from two focus groups and seven one-to-one telephone interviews. method focus groups (n = ) and interviews (n = ) explored the experiences of currently practicing gps in england, recruited through conveni- ence sampling. data were collected using a semi-structured interview approach and analysed using thematic analysis. results interviewees understood gps to be under intense and historically un- precedented pressures, which were tied to the contexts in which they work; with important moral implications for good doctoring. many reported that being a full-time gp was too stressful: work- related stress led to mood change, sleep disruption, increases in anx- iety and tensions with loved ones. some had subsequently sought ways to downsize their clinical workload. workplace change resulted in little time for the things that helped gp resilience: a good work life balance and better contact with colleagues. whilst some gps were coping better than others, gps acknowledged that there was only so bmc complementary and alternative medicine , (suppl ): page of much an individual gp could do to manage their stress, given the ex- ternal work issues they faced. conclusion gps grasp their emotional lives and stresses as being meaningfully shaped by nhs factors; resilience building should move beyond the individual to include systemic work issues. p use of complementary and alternative medicine during an outbreak of mers among community people hyun j cho, dongwoon han, soo j choi, young s jung, hyea b im global health and development, hanyang university, college of medicine, seoul, - , south korea correspondence: hyun j cho bmc complementary and alternative medicine , (suppl ):p purpose to obtain information on the use of complementary and alternative medicine (cam) among community people during mers outbreak in korea. methods to collect data, we conduct a cross sectional study using semi- structured questionnaire during th november to nd december . the sample size of participants was (response rate . %). respondents were asked questions about their use of cam in the past months, perception on cam and outbreak, reasons for the use of cam and so on, as well as general socio-demographics results during the mers outbreak, the percentage of participants who had used at least one cam therapy was . %. the most popular cam used was vitamins ( . %). the most common reason partici- pant gave for using cam was to "stimulate an immune response" ( . %). the higher level of concern on no available treatment method for mers was associated with greater use of cam, that is statically significant. the predictors on the use of cam were: gender, age, perception on government policy on mers outbreak, subjective health status. conclusions cam was popular among community people during mers out- break in korea. the results of this study show that community people currently lack the knowledge, confidence, and information to provide proper guidance to the increasing number of people being using cam modalities. central and local government, academia, healthcare professionals should responsibly advise community people and pa- tients about the use of cam. and further studies are required to im- portant sources of guidance with respect to providing community people and patient counseling. p attitudes and knowledge towards interprofessionalism among naturopathic students kieran cooley , , laura tummon-simmons canadian college of naturopathic medicine, department of research and clinical epidemiology, toronto, canada; university of technology sydney, arccim, faculty of health, sydney, australia correspondence: kieran cooley bmc complementary and alternative medicine , (suppl ):p background attitudes among health care practitioners have been shown to im- pact their effectiveness in collaborative practice. naturopaths have scope and interest in collaboration, however there is a lack of quanti- tative evidence evaluating their attitudes towards interprofessional collaboration (ipc). understanding these attitudes and those of co- operating practitioners may assist in future integrative practice. methods all naturopathic interns (nis) from the canadian college of naturo- pathic medicine (n = ) were surveyed using the validated atti- tudes to health professionals questionnaire (ahpq) following informed consent. responses were anonymous, scales were scored in duplicate to enhance accuracy. demographic information (age, gen- der, self-rated experience in interprofessional settings), and know- ledge and attitudes towards nine healthcare professions (medical doctors, nurses/nurse practitioners, pharmacists, naturopathic doc- tors/interns, chiropractors, registered massage therapists, physiother- apists, traditional chinese medical practitioners, registered dieticians) were assessed. results were summarized as aggregate subscales, "caring" and "subservient". two-tailed students t test, and linear re- gression tests were to used to assess differences across healthcare professionals and examine correlations. results responses ( . % response rate) were collected from initial gen- eral survey of nis with of these responses being completed effect- ively. the majority of participants were female ( . %), with less than year of experience as a part of a regulated health care profession ( . %); . % indicated they had or no expertise in integrative health care models ( . %). by nis, nds were seen as the most "car- ing."; a statistically significant difference compared to ni"s views of other professions (p < . ). r.phs and mds were rated lowest on the "caring" subscale in comparison to other professions. nds, rn/nps, rmts, tcms, and rds were found to have non-statistically significant, but higher "subservience" attributed to their professions while. mds, dcs, and pts were rated lowest in terms of "subservience" in com- parison to other professions (p < . ). conclusion it is feasible to assess knowledge and attitudes of nis. nis view them- selves differently than other health care professionals. further under- standing of nds attitudes towards interprofessional collaboration would inform educational competencies, professional development and ipc. p abbreviated mindfulness-based cognitive therapy intervention for hospital employees: feasibility, acceptability and preliminary effectiveness sian cotton , christina m luberto , rachel wasson , kristen kraemer , richard sears , carly hueber family and community medicine, university of cincinnati college of medicine, cincinnati, oh , united states; psychiatry, harvard medical school, boston, ma, united states; psychology, bowling green state university, bowling green, oh, united states; pyschology, medical university of south carolina, charleston, sc, united states; university of cincinnati, cincinnati, oh , united states; integrative medicine, uc health, cincinnati, oh, united states correspondence: sian cotton (sian.cotton@uc.edu) bmc complementary and alternative medicine , (suppl ):p background hospital employees may experience occupational stress and burnout, negatively impacting both quality of life and job performance. evidence-based interventions implemented within hospitals are needed to promote employees well-being. mindfulness-based cogni- tive therapy (mbct) is an -week evidence-based group intervention for reducing stress and improving well-being. no research has ex- plored the use of an abbreviated mbct protocol specifically for hos- pital employees that would be feasible and practical. the purpose of this study was to explore the feasibility/acceptability, and preliminary effectiveness of a -week mbct intervention for hospital employees. methods/results participants were employees (mage = . ; % white; % fe- male) who participated in the intervention between september -january . participants completed self-report measures of stress and burnout pre and post intervention, and answered open- ended satisfaction questions post-intervention. four rounds of the - week group were completed, each one enrolling at least partici- pants, but with attendance rates declining across sessions ( % at session vs. % at session ) due to work-related schedule conflicts. intervention content was acceptable as evidenced by high perceived value (m = . out of ), homework compliance ( % practicing at bmc complementary and alternative medicine , (suppl ): page of least times/week), and unanimous requests for the intervention to expand. there were large, statistically significant decreases in stress (Δm = . , p < . , d = . ) and burnout (Δm = . , p = . , d = . ), which were supported by qualitative themes of improved self- regulation, mindfulness, stress reduction, and work productivity. conclusions it is feasible to implement an abbreviated mbct intervention for hos- pital employees within busy hospital settings. this intervention is both acceptable and useful for improving employees health-related outcomes. p iyengar yoga therapy: seventeen years of experience at a single yoga center gwendolyn derk , , jr lill , , ruopeng an , lois steinberg kinesiology and community health, university of illinois, college of medicine, urbana-champaign, , united states; iyengar yoga center, urbana, , united states correspondence: gwendolyn derk bmc complementary and alternative medicine , (suppl ):p purpose to retrospectively analyze data collected at the iyengar yoga center of champaign-urbana (iycu) between - , in order to quan- tify the types of patient conditions and change in self-rated health status methods iycu yoga therapy students fill out a survey before and after every class, ranking their physical and mental status. the scale ranges from (completely good) to (completely bad) with a neutral point. stu- dents also fill out a detailed patient history form at their first session. students without the history form were excluded from analysis. sur- vey values were normalized to values between and . a repeated measures mixed effect model was created for analysis. results there were eligible students (n = ) with ages ranging from - years and a mean age of . ± . years. participants were % (n = ) female and . % (n = ) male. the top five chief complaints include low back pain (n = , . %), hips (n = , . %), menstrual problems (n = , . %), cancer (n = , . %), and neck pain (n = , . %). the median number of classes attended is . the median ratio of length of practice to the number of classes attended is . days per class. the repeated measures mixed effect model (n = ) showed statistically significant improvements in both phys- ical status ( . ± . , p = . , % ci [ . , . ]) and mental status ( . ± . , p = . , % ci [ . , . ]) after a yoga therapy session. conclusions iyengar yoga therapy is an effective complementary therapy for a wide variety of patients, including those with multiple comorbidities. this project was reviewed by the university of illinois institutional re- view board and determined to meet the criteria for exemption at cfr . (b)( ). p enhancing cardiac balance in high-burden caregivers after a reiki training program lourdes diaz rodriguez , francisca garcía-de la fuente , miguel de la vega , keyla vargas-román , jonatan fernández-ruiz , irene cantarero- villanueva nursing, faculty of health sciences/university of granada, granada, , spain; emergency unit, university hospital san cecilio, granada, spain; sol y luna center, granada, spain correspondence: lourdes diaz rodriguez bmc complementary and alternative medicine , (suppl ):p purpose the aim of this study was to compare the effects of a reiki training program during month hours per week (experimental group n = ) versus no treatment (control group n = ) in high-burden caregivers. methods a controlled repeated-measures single-blind trial was conducted in volunteer caregivers . % male and . % female with a mean (sd) age of . ( . ) years. the inclusion criteria were: parents car- ing for sick children with a caregiver burden of more than points in zarit burden scale and live with the child in the same home for at least years before the study. they were recruited from associations in granada city and its province and through word and mouth. heart rate variability, blood pressure and resting heart rate were assessed as outcomes and were measured before and after the pro- gram ( , month). results we found no significant between-group differences in descriptive characteristics or in any pre-intervention outcome measure. a re- peated measured analysis revealed significant increases in hrv index (f = . , p = . ), sdnn (f = . , p = . ), rmssd (f = . , p = . ) and significant decreases in systolic blood pressure (f = . , p = . ), diastolic blood pressure (f = . , p = . ) and in rest heart rate (f = . , p = . ) in experimental group in comparison to the control group. conclusions a reiki training program improves the cardiac balance in high bur- den caregivers across enhancing heart rate variability and diminish- ing blood pressure. p effects of a reiki program on psychological state and happiness in high-burden caregivers lourdes diaz rodriguez , francisca garcía-de la fuente , fanny jiménez- guerrero , keyla vargas-román , jonatan fernández-ruiz , noelia galiano-castillo nursing, faculty of health sciences/university of granada, granada, , spain; emergency unit, university hospital san cecilio, granada, spain; reiki center, granada, spain correspondence: lourdes diaz rodriguez bmc complementary and alternative medicine , (suppl ):p purpose the aim of this study was to compare the effects of a reiki training program during month hours per week (experimental group n = ) versus no treatment (control group n = ) in high-burden caregivers. methods a controlled repeated-measures single-blind trial was conducted in volunteer caregivers . % male and . % female with a mean (sd) age of . ( . ) years. the inclusión criteria were: parents car- ing for sick children with a caregiver burden of more than points in zarit burden scale and live with the child in the same home for at least years before the study. they were recruited from associations in granada city and its province and through word and mouth. par- ticipants completed the lima scale happiness and the hospital anx- iety and depression scale before and after the program ( , weeks). results we found no significant between-group differences in descriptive characteristics or in any pre-intervention outcome measure. a re- peated measured analysis revealed significant increases in global score of happiness (f = . , p = . ) and in all subscales: posi- tive sense of the life (f = . , p = . ), satisfaction with the life (f = . , p = . ), personal realization (f = . , p = . ) and happiness of living (f = . , p = . ); and also diminished anx- iety levels (f = . , p = . ) in experimental group in comparison bmc complementary and alternative medicine , (suppl ): page of to the control group. there were not significant differences in de- pression levels between groups (f = . , p = . ). conclusions a reiki training program during one month improves the psycho- logical state and happiness in high burden caregivers. p retrospective study on the use of homeopathy in a public primary care setting gualberto diaz-saez , , josé i torres-jimenez , , olga garcia-gomez , , luis hortal-muñoz , , camino diaz-diez , imohe (iob), integrative oncology, madrid, spain; semergen, homeopathy, madrid, spain; centro de salud dr castroviejo, madrid, spain; md anderson, homeopathy, madrid, spain; centro de salud gandhi, madrid, spain; clinica de medicina integrativa - cmi, homeopathy, madrid, spain correspondence: gualberto diaz-saez (diazgual@yahoo.es) bmc complementary and alternative medicine , (suppl ):p objectives describe the frequency of use of homeopathic treatments in a public primary care outpatient clinic, the diseases treated and the clinical outcome. methods a retrospective observational study of the patients of a general prac- tice unit was performed. medical records were randomly se- lected. the variables were: use of homeopathy, diagnosis; kind of illness (acute or chronic), prescribed treatment, role of homeopathy and clinical outcome. results , % of the patients had used homeopathy at least once, which was independent form gender and age. of them, , % were treated for chronic conditions. homeopathy was the only prescription in , % of cases (main in % and adjuvant in , %). most frequently treated complaints were musculoskeletal ( %), respiratory ( %), psychic ( %), cardiovascular ( %) and cutaneous ( %). the clinical outcome was favourable (improved or cured) in % of cases, % of the acute and % of the chronic. no adverse reac- tions were recorded. conclusions homeopathy can be a useful therapeutical option in a public primary care setting. the study points out the feasibility of its implantation and the effectiveness and safety of the homeopathic prescription. keywords: homeopathy; primary care; pharmacoepidemiology; retro- spective study. p assessing and promoting the use of integrative medicine in the medically-underserved and uninsured community of anaheim through crescent clinic of orange county demijon dicen university of california, irvine, huntington beach, , ca, united states bmc complementary and alternative medicine , (suppl ):p background while it is evident that the use of integrative medicine (im) amongst americans has increased, there has been a clear separation of those who can and cannot gain access to integrative health. since there has been limited knowledge of im-use in minorities, more research on patient attitudes of im, including nutritional and lifestyle medi- cine, is critical to explore its role amongst the underserved community. purpose the goal of this study is to understand the position of integrative medicine (im) in the low income and underserved population of ana- heim and how im can be incorporated into the quality improvement of outpatient primary health care amongst minorities. methods a survey was administered for eight weeks to patients at crescent clinic, a non-profit, free clinic for the uninsured located in anaheim. the -question survey assessed patient attitudes and knowledge of im, interest of im health fairs and workshops, and the overall role of im in health care in terms of disease prevention and treatment. the data was stored in microsoft excel and analyzed with redcap. results of the crescent clinic patients surveyed, . % of patients had lit- tle to no knowledge about im, but . % of patients would consider im if his or her physician recommended it. additionally, . % of the patients were willing to learn more about im if there were accessible workshops in the community. while . % of crescent clinic patients believed that im should be a treatment option, . % of the patients believed im can be used as preventative medicine. conclusion overall, the study greatly supports the role of im amongst the unin- sured and underserved community of anaheim through more educa- tion and intervention. there is also a high demand in im prevention and treatment from healthcare providers. this may suggest imple- menting intervention programs on nutritional medicine and lifestyle medicine to improve wellness and manage blood pressure amongst crescent clinic patients, which can be made available to all under- served and uninsured patients of anaheim, ca. p measuring complementary medicine in australian conventional healthcare education helene diezel , , jon adams , amie steel , , jon wardle office of research, endeavour college of natural health, fortitude valley, , australia; australian research centre in complementary and integrative health (arccim), university of technology sydney (uts), sydney, australia correspondence: helene diezel bmc complementary and alternative medicine , (suppl ):p background complementary medicine (cm) is being accessed at a high rate in developing countries. little is understood about how much conven- tional medicine practitioner learn about cm, so this study aimed to develop a quantitative tool to enable the cm content in australian conventional healthcare courses to be mapped. methods a questionnaire was developed to investigate the level of inclusion in cm content in chc and the attitudes and beliefs of the faculty re- sponsible for determining curriculum cm content in the form of the curriculum in integrative medicine questionnaire (cimq). this includ- ing consideration of cognitive and communicative processing and was then pre-tested through cognitive and linguistic interviewing with a convenience sample of conventional healthcare course con- tent decision makers (n = ). the pre-validated tools cam health be- lief questionnaire (chbq) and integrative medicine attitude questionnaire (imaq) were included in the attitudes and perceptions construct of the cimq. results non-standardised incorporation of cm inclusion in nursing and mid- wifery courses meant the general course characteristics construct re- quired significant refinement to allow for variability in cm inclusion. cm content delivery in courses was another cimq construct that had to reflect this flexibility in cm presence within conventional health- care higher education. conclusions variability of cm inclusion means measuring cm presence in discrete health professionals education courses is difficult so knowing what exposure to complementary healthcare exists is very problematic. the cimq is the first step forward in under- standing the level of familiarity conventional healthcare has of cm and furthering the possibility of interprofessional communica- tion and eventually collaboration. bmc complementary and alternative medicine , (suppl ): page of p providing maternity care in a silo: experiences of complementary medicine practitioners in australia helene diezel , , amie steel , , jane frawley , jon wardle , alex broom , jon adams office of research, endeavour college of natural health, fortitude valley, , australia; australian research centre in complementary and integrative health (arccim), university of technology sydney (uts), sydney, australia; sociology, university of new south wales, sydney, australia correspondence: helene diezel bmc complementary and alternative medicine , (suppl ):p background women’s use of complementary medicine (cm) during pregnancy is reported as high in developed countries but little is known about the experiences of providers of this care and how this care is occurring in contemporary healthcare.cm practitioners are involved in mater- nity care at an increasing rate where patient centred care and inter- professional collaboration are paramount to ensure the effective and safe health provision for mothers and babies. despite this, comple- mentary healthcare providers are not currently included in the main- stream category of services providing maternity care in most developed countries. the study presents the perspectives and experi- ences of cm practitioners providing care to pregnant and birthing women from outside of the established maternity care system. methods semi-structured interviews were conducted using an interview guide, which had been piloted with a cm practitioner known to the re- searcher. thematic data analysis was undertaken from the interview transcripts after importing into nvivo qualitative data analysis program. results practitioners from a variety of cm disciplines were interviewed (n = ) and a semi-structured approach was employed. fieldwork was also designed to remain sensitive to participants" own telling and concerns. themes emerged around professional practice of cm prac- titioners falling outside of the maternity "system" and how this was reported to negatively impact cm practitioner’s experiences of work- ing with other maternity care providers. conclusions cm practitioners experiences of appear to experience a lack of inter- professional collaboration when providing maternity care to women and do not feel supported by mainstream healthcare systems in their provision of maternity services. p exploring diet-related factors associated with gastrointestinal heat retention syndrome in children: a cross-sectional study fei dong, he yu, tiegang liu, xueyan ma, liyi yan, yuxiang wan, zian zheng, xiaohong gu beijing university of chinese medicine, beijing, , china correspondence: he yu (yuhe @ .com) bmc complementary and alternative medicine , (suppl ):p background gastrointestinal heat retention syndrome (ghrs) is a syndrome that is associated with increased gastrointestinal heat caused by a meta- bolic block in energy. this study aim to explore the diet-related fac- tors which may be associated with ghrs. methods a cross-sectional study has been conducted in pediatric clinic depart- ment of beijing dongfang hospital from october to januar- y .children who were eligible for inclusion criterion in our study were those with age ≥ year old and ≤ years old and with a his- tory of or more rti episodes in the past months. tcm symp- toms, demographic and physiological characteristics were recorded by using semi-structured questionnaire. participants were enrolled into group with ghrs and group without ghrs according to whether they had ghrs or not. logistic regression model was used to screen diet-related independent variables. results ( . %) children with ghrs and ( . %) without ghrs were enrolled and finished questionnaire survey. beef eating fre- quency moderate por = . ( . - . ), beef eating frequency more- por = . ( . - . ), duck eating frequency moderatepor = . ( . - . ), duck eating frequency morepor = . ( . - . ), eat- ing other convenience foods(sesame paste, snack gruel et al) por = . ( . - . ),engorgementpor = . ( . - . ]), eating preferences por = . ( . - . ) were positively correlated with ghrs; vegeta- bles eating quantity moderate por = . ( . - . ),vegetables eat- ing quantity more por = . ( . - . ), fruit eating frequency moderate por = . ( . - . ), fruit eating frequency more por = . ( . - . ), bean curd eating frequency moderate por = . ( . - . ), bean curd eating frequency more por = . ( . - . ) were negatively correlated with ghrs in our logistic regression model. conclusions beef eating frequency, duck eating frequency, eating other conveni- ence foods(sesame paste, snack gruel et al), engorgement, eating preferences were positively associated with ghrs. vegetables eating quantity, fruit eating frequency, bean curd eating frequency were negatively correlated with ghrs. p exploring association between gastrointestinal heat retention syndrome and pneumonia in children: a prospective cohort study fei dong, he yu, liqun wu, tiegang liu, xueyan ma, jiaju ma, liyi yan, yuxiang wan, zian zheng, jianhua zhen, xiaohong gu beijing university of chinese medicine, beijing, , china correspondence: xiaohong gu (guxh @ .com) bmc complementary and alternative medicine , (suppl ):p aim to explore the association between gastrointestinal heat retention syndrome (ghrs) and pneumonia in children. methods a prospective cohort study has been conducted in pediatric clinic department of beijing dongfang hospital from october to december in .tcm symptoms, demographic and physiological characteris- tics were recorded by using semi-structured questionnaire. ghrs was considered as a predisposing factor. children participants were followed up for next months. we contacted with their parents by using a face-to-face questionnaire interview, via email or phone every months. episodes of pneumonia and rtis were recorded in detail. results children were enrolled and ( . %) followed up for months. the incidence of rti was . ( . - . )episodes per child-year. the risk ratio (rr) value of pneumonia occurrence in months follow-up visit was . ( . - . ), rr value of pneumonia occurrence in months follow-up visit was . ( . - . ). swift di- gestion with increased appetite (p = . ), excess head sweating (p = . ), foul breath (p = . ), and fingerprint red or purple (p = . ) were positively correlated with pneumonia occurrence in months follow-up visit in linear regression model. severe swift di- gestion with increased appetite or = . ( . - . ), severe foul breath or = . ( . - . ), mild dry stool or = . ( . - . ), and bmc complementary and alternative medicine , (suppl ): page of fingerprint red or/and purple or = . ( . , . ) were positively correlated with pneumonia occurrence in months follow-up visit in logistic regression model. conclusions ghrs is a risk factor of pneumonia in children and may be associated with pneumonia. swift digestion with increased appetite, excess head sweating, foul breath, yellow urine, dry stool, purple fingerprint were positively associated with pneumonia. chinese clinical trial registry number: chictr-cch- p patients, medical staff and complementary therapists' conceptions of integrative medicine: a systematic review julie dubois, pierre-yves rodondi institute of social and preventive medicine, lausanne university hospital, lausanne, , switzerland correspondence: julie dubois bmc complementary and alternative medicine , (suppl ):p purpose attempts to integrate complementary and alternative medicine (cam) treatments into conventional care are being made throughout the world. the objective was to investigate patients, medical staff and complementary therapists’ position towards the inclusion of cam into conventional care and the forms it should take. method a database search was conducted in embase, medline, pubmed and web of science for the period - . research articles were in- cluded if they specifically addressed perspectives of users and profes- sionals in western countries towards the integration of cam into conventional care and the modalities of that integration. results on a total of identified papers met the inclusion criteria. ten articles used questionnaire surveys, used qualitative methods and used a mixed-method approach. ten studies were conducted in israel (by the same research team), in the usa, in europe and in australia. those studies revealed a tendency to support the principle of cam integration but discrepancies on the forms it should take. family physicians were often considered as the best source for referral, but views diverged on whom should provide treatments (md vs non-md cam practitioners) and where (primary care clinics/ hospitals vs distinct location). patients constituted the most homogenous group in their conceptions of integrative medicine. conclusion this review showed that, with the exception of the israeli ones, few stud- ies have addressed the subject under scope. more investigations are needed among the various actors involved to delineate how integrative medicine should be implemented to fit local contexts and needs. p movements during eurythmy therapy induce cardio-locomotor coherence friedrich edelhäuser , , sophia schwartze , barbara trapp , dirk cysarz , integrated curriculum for anthroposophic medicine, university of witten/herdecke, herdecke, , germany; institute of integrative medicine, university of witten/herdecke, herdecke, germany correspondence: friedrich edelhäuser bmc complementary and alternative medicine , (suppl ):p background eurythmy therapy (eyt), a mind-body therapy from anthroposophic medi- cine, has an impact on cardiac autonomic regulation as assessed e.g. by the analysis of heart rate variability (hrv). eyt consists of a repetition of a pre-defined movement sequence in conjunction with guided and motor imagery. in this study, the impact of the movement sequence and its repe- tition during an eyt exercise on cardiovascular regulation is investigated. methods twenty-eight healthy subjects (age: . ± . year, female) performed an eyt exercise guided by an eyt therapist. the therapist controlled the speed of the eyt exercise by means of a repeatedly shown video record- ing of the movement sequence. control exercise (ce ) consisted of the exercise movements without guided imagery, control exercise (ce ) was walking on the spot. exercise movements were video recorded for movement analysis. coherence between exercise movements and oscilla- tions of hrv (extracted from holter ecg recordings) were analyzed. results the coherence between exercise movements and oscillations of hrv were pronounced during the eyt exercise ( . ) and ce ( . ). ce showed a lower level of coherence ( . ). the duration of a single movement sequence was seconds, i.e. . hz repetition fre- quency, leading to an increase of very low frequency power of hrv compared to ce ( . ± . vs. . ± . ln ms ). conclusions the repetition of movement sequences during eyt and ce led to oscilla- tions of cardiac autonomic regulation similar to the repetition frequency of the exercise. hence, eyt induces cardio-locomotor coherence. clinical trials registration number: drks (registered on / / ) about this supplement these abstracts have been published as part of bmc complementary and alternative medicine volume supplement , . the full con- tents of the supplement are available online at https://bmccomple- mentalternmed.biomedcentral.com/articles/supplements/volume- - supplement- . please note that this is part of . publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. • we accept pre-submission 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veterinary science and public health (divet), università degli studi di milano, via celoria , milano, italy; e-mails: luigi.bonizzi@unimi.it (l.b.); alfonso.zecconi@unimi.it (a.z.) * author to whom correspondence should be addressed; e-mail: micaela.cipolla@unimi.it; tel.: + - - - ; fax: + - - - . academic editors: duncan c. ferguson and margarethe hoenig received: may / accepted: july / published: july abstract: despite the fact that health communication is a discipline developed only recently, its importance in human medicine is well recognized. however, it is less considered in veterinary medicine, even if it has the potential to improve public health because of the role of veterinary medicine in public health. for this reason, an one health approach is useful for communication as well. this approach leads to a “one communication” concept, which is the result of the synergy in communicative efforts both in human and in veterinary medicine. our analysis explores the potential of communication in several veterinary fields: institutions, food safety, companion animal and food-producing animal practice, pharmacology and drugs, wildlife fauna and environment. in almost all the areas of veterinary activity communication can contribute to human health. it takes many forms and use several channels, and this variety of communicative opportunities represent a challenge for veterinarians. for this reason, the communication course should be included in the curricula of veterinary medicine schools. as one health, one communication is a strategy for expanding collaborations in health communication and it will enhance public health. keywords: communication; one health; public health; antimicrobial resistance; food safety; food-producing animals; risk communication; companion animal practice open access vet. sci. , . introduction health communication is a discipline only recently developed, and it is “the study of how health information is generated and disseminated and how that information affects individuals, community groups, institutions and public policy” [ ]. the aim of health communication is to inform and influence people’s behaviour and attitude in order to improve health [ – ]. this is possible because it concerns all aspects of health, including, i.e., research, clinical practice, public health, global health and policy making [ , ]. different approaches are available to investigate all of the aspects, i.e., health campaigns, risk communication and patient-provider communication. an effective communication is essential to public health. it can be written and verbal, taking many forms and using various channels such as physicians and other health professionals, family, friends and mass media, internet, advertisement. for its growing importance, the world health organization (who) includes health communication in its activities and provides several guides supporting communication strategies development for different situations, such as health emergencies and disease prevention [ – ]. moreover, who considers communication expertise as essential to outbreak control as well as epidemiological training and laboratory analysis, and demonstrated a significant reduction of cases during an outbreak when applied a proactive communication [ , ]. many other institutions, such as unicef, fao, cdc, johns hopkins university and others agree that communication is a necessary tool for public health [ – ]. any advice aiming to enhance health by changing people’s behaviour is a communicative act. health communication allows to identify contexts, channels, messages and factors having the potential to motivate individuals to use correctly health information. therefore, health communication supports health professionals in their daily work, educates patients and helps policy makers; it has a powerful role in disease prevention and health promotion. it is part of health management, even in settings with limited resources, helping to use information and interacting with the community or other partners. due to its pivotal importance, health communication became part of the curriculum in several medicine and veterinary medicine schools worldwide, but usually health communication refers to human health and it is generally less considered in veterinary medicine. the intended outcome of this article is to describe this new aspect of veterinary medicine—the health communication—and its contribution to public health. with our paper we highlight the role of communication in the main branches of veterinary activity, to help veterinarians to find their role in the “one communication” perspective. indeed, communication in veterinary medicine has the potential to contribute to public health and should be considered in a one health perspective. one health the one health concept links human, animal and environmental health, it is “a worldwide strategy for expanding interdisciplinary collaborations and communications in all aspects of health care for humans, animals and the environment. the synergism achieved will advance health care for the st century and beyond by accelerating biomedical research discoveries, enhancing public health efficacy, expeditiously expanding the scientific knowledge base, and improving medical education and clinical vet. sci. , care.”[ ]. this approach considers all global health threats to gain cross-disciplinary collaboration, especially between physicians and veterinarians. the result is a collaborative effort to enhance human and animal health between the health professions. one health has its origins in the s, when rudolf virchow, the german physician who coined the term "zoonosis", highlighted the linkages between human and veterinary medicine [ ]. in the following years, other physicians and veterinarians recognized the importance of good animal health for the public health. one of them, calvin schwabe, made important contributions to epidemiology, zoonoses, tropical health and public health. he coined the term “one medicine”, emphasizing the close interdependence and similarities between human and veterinary medicine [ ]. more recently, the wildlife conservation society promoted a symposium to discuss the movements of diseases among human, domestic animal and wildlife populations. the symposium set twelve priorities—the manhattan principles—for an interdisciplinary strategy to combat diseases and maintain the ecosystem integrity. these principles considered, with human and animal health, also environment health [ ]. the one health approach has been endorsed by the main global health organizations, such as who, cdc, efsa, oie, fao [ – ]. the collaborative effort between human and veterinary medicine should be applied not only at global level but also at local level, where it could be a new paradigm of health management [ ]. this will result in a more effective and sustainable organization of public health, reducing the risk of zoonotic diseases such as rabies, h n avian influenza, west nile disease, tbc and diseases caused by e. coli stec, staphylococcus aureus mrsa, nipah and hendra viruses, hantaviruses, filovirus such as ebola and marburg viruses. . veterinary medicine and public health the purpose of veterinary medicine is to protect public health, through the promotion of animal health and food safety. to fulfil this objective, veterinary medicine has many arenas of activity in public health, including (figure ):  institutions (health authority, healthcare system)  food safety and nutrition  clinical practice o companion animals o food-producing animals  pharmacology and drugs  wildlife fauna  environment in all these fields, communication has a key role and can contribute to public health by influencing people’s behaviour and attitude. vet. sci. , figure . potential contributes of veterinary medicine to public health in a one health and one communication perspective. . . institutions health care authorities and systems have the responsibility to manage health system, and communication is part of the management. therefore, the role of communication is related to the institutional setting. we reported, as example, one european health system. in the italian health system, communication for human and veterinary medicine is unique at the higher institutional level, because the ministry of health (ministero della salute) manages both. at lower regional and local institutional level, health authorities work separately on human and animal health, so the communication efforts often are uncoordinated. however, the institutional communication in veterinary medicine gives a high contribution to public health, because of the continuous overlapping between veterinary and human medicine in public health. this institutional activity includes, for example, health campaigns on zoonoses or food safety [ , ]. this organization of veterinary system has both pros and cons. the major benefit of the integration in the ministry of health is that the veterinary health system has a peculiar focus on health, and it is much less biased by production aspects, when compared to the systems under the ministry of agriculture. however, the focus on health, sometimes, put an excessive pressure on the production system, reducing its efficiency, by applying unnecessary barriers to the production process. at the local level, the system splits into the two components of human and veterinary medicine, and this disconnection gives to the veterinary medicine the opportunity to be more independent and effective in a given area, even if a coordination would be hopeful. vet. sci. , moreover, the veterinary diseases surveillance networks have a key role in human surveillance and its utility would be increased through a better integration between the two systems, as happens through the joining of health service [ ]. likewise, a coordination also at the communicative level would produce more efficient efforts in enhancing public health. also at policy and management levels, communication has a key role, as demonstrated by the example of regional veterinary prevention plan – (piano regionale della prevenzione veterinaria – ) of regione lombardia [ ]. this was a new and powerful tool for public health, supporting veterinary health system at regional level, giving to all the operative units and officers an unique and coherent frame of reference [ ]. indeed, our research group developed a model (scorecard) to assess zoonoses and food safety issues. the scorecard supports daily practice setting priority in prevention and risk management, by assigning different scores to various risk and management aspects of each disease or food safety problem. once this assignation has been done, the veterinary officers know the priority of each intervention and, also, if there is a lack of information about the specific disease. this model established a completely new approach to risk characterization in italian public health authorities; it had to be understood and adopted by all the personnel involved in the regional veterinary system and, for this reason, communication was crucial. both internal and external communication strategies were needed. all the members of the regional healthcare system were the audiences of internal communication: regione lombardia, local health authorities (azienda sanitaria locale), regional diagnostic and surveillance laboratory (istituto zooprofilattico sperimentale della lombardia e dell’emilia romagna), research centers. at internal level, the aims of communication were to verify the outcomes of the plan application, to share information and to consolidate cooperation. external communication was addressed to stakeholders, with the aims to involve people, gather information and share results. all the initiatives, planned to inform and involve the target audience, were focused on objectives and results of the prevention plan application. however, the first communication need concerned the plan itself, and the understanding of the new risk characterization praxis. indeed, the document was very articulated; it had many tables (the scorecards) and schemes for disease control plans, prevention protocols and risk characterization, each one concerning one of the veterinary areas. indeed, in italy the veterinary health system has three areas: a for animal health, b for food safety and c for herd management and animal welfare. one of the parameters considered for an effective communication of the plan was its graphic aspect. due to the high amount and complexity of information delivered, we chose a simple and immediate graphic aspect, assigning a specific colour to each area. every piece of information addressed to the animal health sector was green, to the food safety sector was red and to the herd management and animal welfare sector was yellow. everything concerning the past or general topics was blue. this simple color code had a very useful function clarifying the whole document and making it more understandable. moreover, this code made every local health authority having the same color for the same unit. all the veterinary officers recognized themselves in the color of their area, independently by the district of the local health authority. therefore, the primary aim of the plan—to make uniform veterinary health system to improve public health—was achieved also with this simple communicative choice, and it was maintained also in the subsequent edition of the plan [ ]. vet. sci. , . . food safety and nutrition communication on food safety and nutrition frequently pertains to veterinary medicine, being related to food-borne disease, gmo, contaminants, additives and foods of animal origin. consumers receive much information about food, but often it is contradictory and conflicting. this includes alerts, recommendation on what is good for health and what could be dangerous, risks and benefits associate in the same food, food components to reduce, nutrients to increase, warning on different diets and eating styles. all this information provide a non-unique frame of reference, which is difficult to manage and to understand by consumers. sometimes unfounded concerns may overlap reliable messages from health authorities, resulting in more confusion and uncertainty [ ]; especially during an alert or an outbreak, this situation may lead to fear and distrust in the product involved. examples are the recent european food scares on e. coli in vegetables, horsemeat scandal, blue mozzarella cheese, bse and avian influenza. the health and welfare of food-producing animals during breeding, transportation and slaughtering have consequences for human health and are responsibility of veterinarians. therefore, due to the pivotal role of veterinary medicine in animal nutrition, animal health, food inspection and food safety, communication in this area is important for public health, contributing to consumers’ protection from field to fork. communication about food is often risk communication. accordingly with the codex alimentarius commission (cac), risk communication is “an interactive exchange of information and opinions concerning risk among risk assessors, risk managers, consumers and other interested parties [ ]. therefore, food risk communication enables informed decision-making to promote health, fosters the understanding of both the real and the perceived food risk, and shares knowledge between government officials, health professionals, academicians, food producers, stakeholders, journalists and public. misleading messages can have serious consequences not only on public health but also on the entire food supply chain. thanks to a proper communication, authorities, experts and other stakeholders can communicate more successfully, making the public reacting properly [ ]. to meet these needs, many local and international organizations, such as efsa and fao, promoted food risk communication [ , ]. . . clinical practice . . . companion animals companion animals, due to their close relationship with people, are important in the prevention of zoonoses and in their management. moreover, pets have a role as sentinel animal and could be used to protect human health. for example, they are useful in cancer prevention and treatment in humans, because often they share the same risk and carcinogen factors, have many of the same types of cancer and are treated almost with the same drugs as humans [ ]. communication on such topics can contribute significantly to public health [ ]. however, the focus of veterinary medicine in public health is not limited to zoonoses, because the one health concept involves all of the aspects of health, including mental health via the human-animal bond phenomenon [ ]. this latter aspect gives to the veterinary medicine a further role in public vet. sci. , health, through disciplines centred on human-animal bond such as pet therapy. moreover, the one health statement amplifies the role of companion animals clinical practice in maintaining and improving human health, because it concerns not only zoonoses but also the owner-pet relationship. the importance of communication in clinical practice has been widely recognized, even if only recently in veterinary medicine, where effective communication increases client satisfaction and compliance [ – ]. therefore, this skill has become part of the veterinary education programs in many countries, being as important as other clinical skills [ , – ]. however, in many european countries communication is still poorly considered. this situation may lead to communication errors, failures in meeting client expectations and, eventually, to complaint or malpractice claim as has been observed in human medicine [ ]. recent studies showed that in one of these countries, the large majority of pet owners consider the own pet as family member and this also affected owner responses and attitudes towards the veterinarian [ ]. these results confirm the role of communication in improving veterinary practice and promoting clients’ comfort, satisfaction and well-being. . . . food-producing animals communication has a key role also in food-producing animals practice, improving management and animal health, as demonstrated for example in dairy farms [ – ]. communication strategies are essential in promoting dairy herd health and are required to support diseases control programs [ , ]. indeed, how consultant delivers information affects ideas, beliefs and motivation of the farmer, thus his/her behaviour and actions. [ – ]. therefore, the leading role of communication in dairy herds is due to its power in influencing how farmers apply consultants' advice and, thus, in improving animal health and food safety. it is crucial for public health in a “from field to fork” perspective, because farmer’s actions and management directly influence the quality of meat, milk and milk products. all these aspects improve also herd sustainability. an effective communication in food-producing area supports development and improves health and innovation, also in emerging countries. however, communication in veterinary practice is poorly considered in many countries including italy. in this country, recent studies showed that dairy farmers are not satisfied with their consultants’ communication [ ]. this gap in veterinarians' skill represent a problem because an effective farmer- veterinarian communication is essential to improve farm management, herd health, food safety and herd sustainability. . . pharmacology and drugs the activity of veterinarians related to pharmacology and drugs is often cross-disciplinary, covering companion and food producing animal practice, food security, and official drugs residue controls. however, the rising importance of prudent use of antibiotics makes this topic suitable to become a specific area under the one health approach. indeed, the concern on antimicrobial resistance (amr) increased in recent years; it is considered a major public health threat, due to misuse of antibiotics in both human and animal therapy. therefore, it is a cross-disciplinary issue, engaging veterinarians to reduce and monitor antimicrobial usage in livestock [ , ]. vet. sci. , many veterinary organisations promote the responsible and prudent use of antimicrobial agents in animals, such as the world organisation for animal health (oie) [ ]. moreover, oie developed standards and guidelines for oie member countries to address the risk of the emergence or spread of resistant bacteria that result from the use of antimicrobial agents in food producing animals [ ]. the european medicines agency (ema) implemented the european surveillance of veterinary antimicrobial consumption (esvac) project, to identify possible risk factors that could lead to the development and spread of antimicrobial resistance in animals. the aim was to develop a harmonised approach for the collection and reporting of data on the use of antimicrobial agents in animals from eu member states. thus, ema published reports on sales of veterinary antimicrobial agents in eu/eea countries [ ]. the international dairy federation (fil-idf) published a guide to prudent use of antimicrobial agents in dairy production [ ] and also the federation of veterinarians of europe (fve) developed a document on amr and prudent use of antibiotics in veterinary medicine [ ]. a specific interest on this topic was shown by u.s. food and drug administration (fda) and the u.s. centers for disease control and prevention (cdc) [ , ]. the latter one funded the development of the antimicrobial resistance learning site (amrls), which is a suite of educational materials promoting the prudent use of antimicrobial agents in veterinary practice [ ]. despite the large interest of veterinary sector on amr, the communication was poorly considered. however, communication in veterinary medicine can promote the prudent use of antimicrobials, being synergic with the initiatives in human medicine. to highlight the problem and to support a rational antimicrobial use, the european union promoted the european awareness day, an health initiative marked annually on november and coordinated by european center for diseases prevention and control (ecdc). for this event, ecdc provides campaign communication materials for the european national health authorities in order to develop a consistent communication campaign on the prudent use of antibiotics. national campaigns use several communication tools, such as leaflets, poster, videos, websites and social media, that are aimed to both prescribers and the general public. many communication initiatives take place across europe, to disseminate messages on risks related to the antibiotic misuse and explaining how to take antibiotics responsibly [ – ]. similar campaigns are promoted also in the united states, canada and australia [ , ]. all these programs show the importance of communication in human medicine to contain amr, but communication in veterinary medicine is equally indispensable to promote a rational use of antibiotics and enhance the collaboration of veterinary organisations with the public health sector to reduce the antimicrobial resistance. . . wildlife fauna and environment the one health concept considers also the health of ecosystem, being health of humans, animals and environment interrelated. indeed, both animals and humans live in the same environment, sharing air, water and food. if there is a poor health for the environment, there is a poor health for people and animals. the environmental pollution is a health hazards but it is not the only threat, because the health of plants is indispensable for having food [ ]. through an effective and responsible management of the natural resources, the one health approach protects human and animal health and ensures a safe food supply [ , ]. veterinary medicine can contribute to the health of the ecosystem, because vet. sci. , agricultural contamination may lead to contamination of foods of animal origin. moreover, these foods can be used as sentinel for monitoring contamination in the environment. for example, pesticide contamination of honey can be related to the contamination source and could reflect the specific pollution of an environment [ ]. the use of animal sentinel for health hazards is very helpful to detect and manage more quickly and efficiently shared health risks [ ]. also when considering toxic risk, as shown by the potentials of “one toxicology”, the protection of domestic and wild animals’ health is relevant to protecting humans [ ]. in recent years the emerging diseases gained a leading role in epidemics on a global scale, and zoonoses were dominant [ ]. these diseases are currently the main and global threat for human health, and are related to both domestic and wildlife fauna. therefore, the synergy between medicine and veterinary medicine is indispensable for the research, the surveillance, the control and the communication of global health challenges at the animal-human-ecosystem interface [ ]. the result of this cooperation is well known in developing countries, where it already resulted in an improved health care for the local populations [ ]. also in this area of veterinary medicine, coordinated communication efforts make an important contribution to public health. . conclusions in almost all the areas of veterinary activity communication can contribute to human health. it takes many forms and employs several channels, and this variety of communication opportunities represent a challenge for veterinarians. for this reason, communication courses should be included in the curricula of veterinary medicine schools, as it happened in some already in north america. veterinarians should improve their communication skills because human and animal health are interrelated, as is health communication in human and veterinary sectors. both of them cover the same issue (zoonoses, food safety etc.) and use the same channels. for example, it is not possible to differentiate between food risk communication in human and veterinary areas, having the same target, using the same strategies and considering the same risks. despite the fact that health communication is a recent matter, it has a growing importance in human medicine but it is less considered in veterinary medicine. however, because of the role of veterinary medicine in public health, communication in veterinary area also has the potential to improve public health. therefore, a one health approach applies to communication as well, leading to the “one communication” concept, which is the result of the synergy in communicative efforts both in human and in veterinary medicine. as one health, one communication is a strategy for expanding collaborations in health communication and it will enhance health care. author contributions micaela cipolla conceived and designed the study, wrote the paper; luigi bonizzi designed the study, revised the paper; alfonso zecconi designed the study, revised the paper. conflicts of interest the authors declare no conflict of interest. vet. sci. , references . harvard school of public health. the field of health communication. available online: http://www.hsph.harvard.edu/health-communication/ (accessed on may ). . hornik, r.c. public health communication—evidence for behavior change; routledge- lawrence erlbaum associates: mahwah, nj, usa, . . cdc. what is health communications? available online: http://www.cdc.gov/ 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interface; fao: rome, italy, . . fao. fao’s support to the one health regional approach—towards integrated and effective animal health—food safety surveillance capacity development in eastern africa; fao: rome, italy, . © by the authors; licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution license (http://creativecommons.org/licenses/by/ . /). wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not 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medical center, miami, fl, usa bruce w. carter miami va medical center, room d , nw street, miami, fl , usa sha’arei bina tag, ne street, north miami beach, fl , usa correspondence should be addressed to e. paul cherniack; evan.cherniack@va.gov received july ; revised october ; accepted october ; published november academic editor: tomasz kostka copyright © e. p. cherniack and a. r. cherniack. this is an open access article distributed under the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. many studies utilizing dogs, cats, birds, fish, and robotic simulations of animals have tried to ascertain the health benefits of pet ownership or animal-assisted therapy in the elderly. several small unblinded investigations outlined improvements in behavior in demented persons given treatment in the presence of animals. studies piloting the use of animals in the treatment of depression and schizophrenia have yielded mixed results. animals may provide intangible benefits to the mental health of older persons, such as relief social isolation and boredom, but these have not been formally studied. several investigations of the effect of pets on physical health suggest animals can lower blood pressure, and dog walkers partake in more physical activity. dog walking, in epidemiological studies and few preliminary trials, is associated with lower complication risk among patients with cardiovascular disease. pets may also have harms: they may be expensive to care for, and their owners are more likely to fall. theoretically, zoonotic infections and bites can occur, but how often this occurs in the context of pet ownership or animal-assisted therapy is unknown. despite the poor methodological quality of pet research after decades of study, pet ownership and animal-assisted therapy are likely to continue due to positive subjective feelings many people have toward animals. . introduction two-thirds of all us households [ , ] and close to half of elderly individuals own pets [ ]. investigations involving pets and other animals attempting to improve the health of older individuals have involved many species, including dogs, cats, and manufactured simulations of animals [ ]. in this paper, the evidence for the impact of animals on the health of the elderly is assessed. given the small number of pub- lished manuscripts, a systematic review was not attempted. rather, the studies considered were obtained by performing a pubmed search using terms including “pets, elderly, and animal-assisted.” additional articles were obtained from the reference lists of the original articles found. . potential benefits of animals . . effects on mental health. the most frequently studied use of animals with elderly participants has been to alleviate manifestations of cognitive disorders, such as agitation [ ]. all of the studies were unblinded, not all were controlled, but most, though not all, showed small but statistically significant improvements in behavioral symptom scores in the animal- assisted interventions. one trial, the sole study that used a bird, uniquely noted that animals conferred psychological benefits to cognitively unimpaired older individuals; persons without cognitive impairment in nursing homes in italy were exposed to either a canary, a plant, or neither of the two [ ]. the individuals hindawi publishing corporation current gerontology and geriatrics research volume , article id , pages http://dx.doi.org/ . / / http://dx.doi.org/ . / / current gerontology and geriatrics research table : studies on use of animals in dementia. study type of study 𝑁 summary of results kongable et al. [ ] case series/observational demented subjects had more socialbehaviors in presence of animal richeson [ ] case series/observational animal therapy reduced amount ofbehavioral disturbance moretti et al. [ ] controlled, unblinded, prospective no difference between control and intervention, both had improved mmse and lower gds scores sellers [ ] case series/observational subjects had less agitation and more socialbehavior with pet present edwards and beck [ ] case-control/prospective subjects exposed to a fish tank had greaterweight gain (𝑃< . ) bernstein et al. [ ] self-controlled, prospective, observational longer conversations in subjects withanimals present fick [ ] self-controlled, prospective, observational more social behavior when animals present tamura et al. [ ] controlled, unblinded, prospective, observational social response similar to real or toy dog assigned to care for a canary or plant were provided with care instructions and participated in a three-month intervention, the details of which were not specified in the paper. subjects who cared for the bird had significantly better scores at the end of the intervention on subscales of psychological symptoms in the brief symptom inventory and leipad-ii- short version, which subjects in the other two groups did not. other investigations explored the effects of animals on demented elderly individuals (see table ). a dementia unit for us veterans piloted the use of a pet dog to elicit for socialization. twelve demented patients exhibited a signifi- cant larger number of social behaviors, such as smiling or speaking in the presence of the dog, implying that animals might create benefit apart from any effect on cognition [ ]. another uncontrolled trial suggested that animals could help alleviate problematic behaviors in demented individuals. this trial enrolled elderly residents of two us nursing homes who had mmse scores of or below who were treated with animal-assisted therapy [ ]. the participants, in a recreational room for one hour a day, met with a dog and its trainer. they could engage in a variety of activities including feeding, petting, grooming the animal, socializing with the trainer, and discussing pets the subjects previously owned. subjects achieved a mean percent, significantly better scores on the cmai index of behavioral disturbance after the intervention. two further studies, in addition, piloted the efficacy of animal-assisted therapy on cognition and mood in cog- nitively impaired older persons. twenty-five moderately demented residents of a nursing home were divided into two groups [ ]. in the intervention group (mean folstein mini- mental (mmse) score . , mean fifteen-question geriatric depression scale (gds) score . ), the subjects experienced a weekly hour and a half activity for days in which they inter- acted with trained pet therapy dogs. the participants either walked, played with, petted, or held the animals under the supervision of a trainer. in the control group (mean mmse score . , mean gds score . , which was not significantly different than in the intervention group) the subjects watched the animals enter the nursing home but did not interact with them. unfortunately, after the intervention, both groups increased their mmse and lowered their gds scores, but the changes in both groups between pre- and postintervention values were not significant. a second small study examined four moderately to severely demented residents of a nursing home who were videotaped for behavioral responses prior to and during an animal therapy session with a dog [ ]. the residents displayed significantly fewer signs of agitation and more social behaviors during animal therapy. an additional trial uniquely explored the possibility that animals might confer physical benefits to older persons with dementia and, furthermore, used fish, which did require the subjects to handle the animals. in this study, demented individuals in several nursing homes successfully gained weight after fish tanks were installed [ ]. sixty-two older persons who resided in the dementia units of three different nursing homes containing tanks in recreational and dining rooms that allowed a twenty × inch viewing area with background lighting to compensate for potential resident visual impairment were compared with another group of residents who had a “scenic ocean picture” added to similar rooms. residents in each of the homes had different exposure times to either the fish tanks or the pictures. when the data from the subjects who were exposed to the fish tanks was pooled together, there was a mean . lb weight gain between three months before the tanks and four months after the tanks were placed (𝑃< . ) but no gain in the control group. animals might provide other benefits to demented indi- viduals, such as improving their ability to socialize, as sug- gested in several trials. in one study, which was not blinded, individuals who lived in a nursing home were exposed to animals during . hours of animal-assisted therapy and . hours of recreational therapy without animals [ ]. long conversations between alert participants were more likely to occur in therapy groups when animals were present, but brief conversations were more likely when animals were absent. in another trial, a videotape captured the social interac- tions between nursing home residents in ninety-minute current gerontology and geriatrics research occupational therapy sessions with or without a dog present [ ]. residents were more likely to have verbal interactions with the dog in the session. in a third investigation, thirteen demented residents were exposed to a plush mechanical toy dog that could sit up and wag its tail, or a robotic dog that could respond to seventy-five commands [ ]. subjects responded to both objects, similarly, by talking to it or clapping their hands when it moved. nurses have written their personal, qualitative observa- tions that animals relieve loneliness and boredom, foster social interaction, and add variety to the lives of such persons, indirectly suggesting other possible advantages to human interactions with animals not thus far documented in clinical trials [ , ]. in one survey, the nursing staff of an intermediate care unit delineated their perceptions of “cat mascots,” animals that spend the day in the unit [ ]. there was no formal regulation of the interaction between the cats and the patients, nor any formal measures of the interaction. however, the nurses did state their opinions that the cats increased patient interactivity with their other people and their environment, and that the patients enjoyed their presence. pets may also positively influence the behavior of demented elderly owners. in one comparison survey, demented pet owners were less likely to exhibit verbal aggression but were otherwise similar to non-pet owners in likelihood of vegetative, hyperactive, or psychotic behaviors [ ]. thus far however, none of these studies on the use of animals in demented subjects have suggested a mechanism for how animals might alter the behavior of such individuals. one might speculate that animals might create a distraction to inhibit disruptive behavior or serve as a surrogate for human interaction to learn or practice social behavior. several investigations have also piloted the use of animals in the treatment of depression with mixed results. one small trial showed even a brief intervention conferred some benefit. thirty-five individuals who were about to receive electro- convulsive therapy (ect) spent minutes with a dog and animal trainer or the same period of time reading magazines before ect treatment sessions [ ]. all subjects had both types of pretreatment every other day. individuals reported lower levels of fear about the upcoming ect rated on visual analogue scales when they had sessions with the dog. in a similar trial, forty-two depressed patients spent time waiting for ect in rooms with or without aquariums. the presence of aquariums did not influence the pretreatment anxiety, fear, or depressive symptoms the patients experienced [ ]. animal-assisted therapy has been considered in the treatment of depression in institutionalized individuals in a number of studies. in one investigation, twenty-eight resi- dents of an italian nursing home had three-hour treatment sessions once a week for a month and a half with a cat or no change in their usual routine [ ]. a nurse supervised individuals in a therapy room, who could pick up or play with the cat. the individuals who interacted with a cat did not have any significant difference in geriatric depression screen score, or cognition as measured by mmse, but did have sixteen-point lower systolic blood pressure (𝑃 = . ) and five-point lower diastolic blood pressure (𝑃= . ) than subjects who were not exposed to the cat. in an additional survey, subjective rankings of pet attachment were actually associated with higher ratings of depressive symptoms in older individuals living in rural areas [ ]. in another trial of nursing home residents in australia, individuals who visited a dog reported less fatigue, tension, confusion, and depression [ ]. cancer patients undergoing chemotherapy were divided into two groups, one of which had a weekly hour-long session of therapy with a dog and one of which did not [ ]. those patients at sessions at which a dog was present rated their symptoms of depression and anxiety half as severe as those who did not. taken together, these studies imply a rather modest benefit at best for animals in depressed individuals. a meta-analysis was conducted of five studies of the use of animal-assisted activities therapy in the treatment of depression in institutionalized subjects [ ]. none of the five studies whose data was pooled for the meta-analysis was ever published in a scientific journal; four were printed in doctoral dissertations and the fifth was published in a book chapter almost thirty years ago. the meta-analysis concluded that such therapy could alleviate depressive symptoms with a “medium effect size.” neither the meta-analysis nor the previously referenced manuscripts commented on possible mechanisms of an effect. other studies have examined if pets might assist the treat- ment of individuals with schizophrenia. two investigations suggested that animals could improve social behaviors in elderly schizophrenics. twenty schizophrenics, at least sixty- five years old, had three-hour visit every week for a year with a dog or cat and a therapist [ ]. the subjects were taught to ambulate with the animals on a leash, bathe, feed, or groom them. a control group had a weekly news discussion session simultaneously with the animal therapy group. schizophren- ics exposed to animals had significantly improved mean scores on social functioning as part of the social-adaptive functioning evaluation scale which members of the control group did not. there were no differences between groups on survey instruments describing the subjects’ impulse control or self-care. in another investigation, schizophrenic inpatients were divided into an intervention and control group [ ]. both had -minute meetings twice weekly with a psychologist for a total of sessions. in the intervention group, a therapy dog and handler participated. the dog was the focus of interventions tailored to improved communication, social skills, and cognitive rehabilitation. the control group had similar sessions, except without the dog. subjects in the intervention group had significantly better scores on the social contact score in of the living skills profile and total score on the positive and negative symptoms score scale. not all investigations noted that schizophrenics derive benefit from animals. fifty-eight older psychiatric inpatients in one trial were randomized to spend five sessions of either an hour a day with either pet therapy or an exercise group [ ]. there was no difference in a forty-question psychiatric symptom score between groups. in addition to the trials of animal therapy in older persons with mental illness, current gerontology and geriatrics research table : studies on the use of animals on blood pressure. study type of study 𝑁 summary of results allen et al. [ ] randomized, unblinded, prospective, controlled subjects had lower blood pressure and heart rates in response to an acute mental stressor in the presence of a pet friedmann et al. [ ] controlled, unblinded, prospective blood pressure lower when animal and acute mental stressor present barker et al. [ ] controlled, unblinded, prospective pet owners reduced systolic and diastolic blood pressure in thepresence of animal when mental stressor present anderson et al. [ ] retrospective chart survey pet owners had lower resting blood pressure wright et al. [ ] mail questionnaire pet owners had lower systolic, mean arteriolar, pulse pressures, risk ofhtn (o.r. = . ) qualitative research comprising focus groups of individuals recovering from acute episodes of psychiatric disease has out- lined what subjects perceive to be benefits of pet ownership, such as companionship and a reinforced sense of self-worth [ ]. however, subjects sometimes were troubled by their pet care responsibilities and grieved over the loss of pets. furthermore, several studies have implied that animals offer psychological or social benefits to the elderly indepen- dent of disease state. in one investigation, the effects of ani- mals on the degree of loneliness of long-term care residents were assessed using a survey instrument [ ]. thirty-five people who lived in a nursing home had an experience in which, for two and a half months, they interacted with several animals including dogs, cats, and rabbits for two hours each [ ]. they scored significantly higher on the patient social behavior score during and after the intervention. in another study, forty-five residents of three facilities were divided into those who received thirty-minute animal-assisted therapy once a week for a month and a half, the same therapy three times a week, or not at all. residents who received any animal therapy scored significantly lower on the ucla loneliness scale than those who did not. in a case series, a robotic dog improved the loneliness scores on one assessment instrument of five medically ill elderly persons [ ]. in a qualitative survey, dog owners over age of in austria stated that dogs provided companionship and a sense of purpose [ ]. however, finally, in few cases, animal-assisted therapy has even been utilized to provide subjective benefit to critically ill patients in intensive care units [ ]. . . effects on physical health. numerous studies have recorded evidence of the effects of animals on the physical health of elderly individuals. several have attempted to quan- tify physiological benefits of the presence of animals on the effects of stress (see table ). one study exposed hypertensive pet owners to the stress of solving an arithmetic problem and making a speech [ ]. the investigators instructed half of the subjects to acquire a pet, and the total subject population was restudied after six months. those who owned a pet had significantly lower increases in systolic and diastolic blood pressure in response to the stressor than those who did not. in an additional investigation, the presence of a dog in the room alleviated an increase in blood pressure in response to the stress of public speech [ ]. eleven community-dwelling older individuals with hypertension, mean age . , were asked to speak in the presence or absence of a dog while blood pressure was being recorded. participants who spoke in the presence of a dog had a significantly lower diastolic blood pressure (mean difference = . mmhg, 𝑃 = . ) than in the absence of the dog. another healthy dog owners of a canine achieved a significant systolic and diastolic blood pressure reduction and subjective measures of anxiety after performing a stressful task whether their own dog or not was used [ ]. there was a greater improvement of outcome measures when the subject’s own dog was used, which lasted up to an hour. finally, in a small case series of community-dwelling elderly individuals aged to , one group of participants received a weekly visit from a nurse with a dog for a month, while one group had visits without the dog [ ]. those who were in contact with the dog had a significantly lower mean systolic and diastolic blood pressure than those who did not (mean decrease mmhg systolic and mmhg diastolic, 𝑃 < . difference in the intervention group from baseline). taken together, these investigations imply ameliorating effect of pet ownership on the physiologic effects of stress. epidemiologic studies suggest pet owners may acquire physical benefits, such as improved blood pressure and greater physical activity. among individuals in australia, those who possessed pets had a significantly lower resting systolic blood pressure, a mean mg/dl lesser cholesterol, and mg/dl triglyceride levels which were statistically sig- nificant [ ]. in another survey of elderly persons (mean age ), pet owners had comparatively reduced systolic mean arteriolar and pulse pressure, and lesser risk of hypertension (o.r. = . ) [ ]. other investigations imply that dog walking encourages individuals to take part in physical activity (see table ). in another study, dog owners in canada (not exclusively elderly, but including participants up to age ) were more likely to visit multiuse or walk-through parks than individuals who did not possess dogs [ ]. an investigation of individuals in the us noted a positive relationship between dog walking and amount of total walking time [ ]. dog owners were more likely to walk at least minutes a week (o.r. . ; % ci . – . ) and were more likely to involve themselves in any physical activity during leisure time (o.r. . ; % ci . – . ). dog walking was also associated with likelihood of walking in washington state residents (𝑃 < . ) [ ]. a recent analysis of a cohort of scottish participants, all at least years old, dog owners were more current gerontology and geriatrics research table : studies on the use of animals on physical activity. study type of study 𝑁 summary of results temple et al. [ ] prospective, observational pet owners more likely to use parks reeves et al. [ ] telephone survey dog walkers most likely to perform leisure-timephysical activity moudon et al. [ ] telephone survey dog owners more likely to walk (o.r. = . ) thorpe et al. [ ] in-person questionnaire survey dog owners more likely to engage in physicalactivity, walking feng et al. [ ] prospective, observational dog walking associated with physical activity(measured by accelerometer carried by subjects) yabroff et al. [ ] telephone survey , dog owners walked longer times raina et al. [ ] telephone survey pet owners experienced slower deterioration inactivities of daily living oka and shibata [ ] online survey dog walkers had more physical activity dembicki and anderson [ ] cross-sectional, observational study dog owners walked longer times schofield et al. [ ] telephone survey dog ownership not associated with recommended physical activity large dog owners walked more than small dog owners likely to report themselves at the highest level of physical activity than those not possessing dogs [ ]. among , elderly individuals (aged – ) in memphis and pittsburgh, dog owners were twice as likely but non-dog owners half as likely to take part in physical activity compared to people who did not own pets [ ]. dog walking may encourage participants to take part in other beneficial physical activities and to preserve their func- tionality. in the largest survey to date, the california health interview survey, comprising more than , individuals, dog owners more commonly walked as a leisure time activity than those who did not own a pet (o.r. . ; % ci . – . ) but were less likely to walk for transportation (o.r. . ; % ci . –. ) [ ]. in an epidemiological survey of more than one thousand elderly persons at least years old in canada, the loss of ability to perform activities of daily living of persons who did not own pets progressed at a greater rate than for pet owners [ ]. in a japanese survey of adults up to age of , dog owners were . times more likely to obtained recommended amounts of physical activity [ ]. among elderly persons in colorado, those possessing pets ambulated longer distances (𝑃 < . ) and had lower triglycerides (𝑃< . ) than those without animals [ ]. however, dog ownership may not be enough to guarantee greater physical activity. in one australian study, owners of large dogs spent more time walking than those who owned small dogs, and dog ownership per se was not associated with greater probability of obtained recommended activity levels [ ]. while none of the manuscripts considering the effect of dog walking on physical activity specifically considered mechanism, one might speculate that, rationally, the need to walk a dog might create a need to walk more, and that increased physical activity might be more associated with the pet’s needs than those of their owners. pet ownership may confer additional benefits to patients with cardiovascular disease (see table ). participants in a treatment trial of antiarrhythmia drugs who owned dogs were less likely to die over a year than others, including those who owned other types of animals [ ]. patients owning pets who were released from a coronary care unit were significantly more likely to survive after one year [ ]. individuals who had sustained a myocardial infarction in the past year and walked their dogs for fifteen minutes three times daily improved their exercise capacity on stationary bicycles (𝑃 < . ) [ ]. further analysis of a trial in which pet owners were implanted with a defibrillator (mean age = ) revealed that possession of pets rendered participants less likely to die (𝑃 = . ) in the following . years [ ]. in another survey, seventy-six persons with congestive heart failure were divided into three groups, one of whom visited a dog for minutes, one of whom visited a person for minutes, and one of whom did not receive either [ ]. those who were exposed to the dog had a lower systolic pulmonary artery or capillary wedge pressures, and reduced serum epinephrine concentrations. sixty-nine in-patients with congestive heart failure participated in an ambulation training program in which they walked with a dog and a trainer [ ]. when matched with a “historical sample” of congestive heart failure patients, subjects who walked with a dog walked twice as far as the “historical sample” (mean . steps/day versus . steps/day, 𝑃 < . ). not all studies imply that pets are beneficial for cardiovascular disease; in one follow-up study of patients admitted to a unit for “acute coronary syndrome” those owning a pet were more prone to death or rehospitalizations a year later [ ]. nevertheless, given the preponderance of the evidence, the american heart association has released a statement acknowledging the relationship and causality of pet ownership in the attenuation of cardiovascular disease risk [ ]. . harms of animals while the use of pets and animal therapy might confer several potential health benefits to older persons, harms also exist. current gerontology and geriatrics research table : studies on the use of animals in cardiovascular disease. study type of study 𝑁 summary of results friedmann and thomas [ ] retrospective data analysis dog owners less likely to die year after mi friedmann et al. [ ] in-person interview survey pet owners had higher -year survival after ccudischarge ruzic et al. [ ] prospective, controlled, unblinded,longitudinal study subjects walking dogs regularly achieved a higher workload on a bicycle exercise test (𝑃< . ) friedmann et al. [ ] retrospective data analysis pet owners implant with defibrillator more likelyto survive cole et al. [ ] randomized, controlled, unblindedstudy subjects exposed to an animal had significantly better hemodynamic and neurohormonal parameters abate et al. [ ] observational intervention group,historically case-controlled study subjects with dog-assisted ambulation walked significantly greater distance parker et al. [ ] in-person interview survey pet owners more likely to have cardiac morbidity and mortality one year after admission for an acute coronary syndrome pet owners fall and sustain fractures as a result of their animals. the us center for disease control and prevention noted that there were , falls a year attributed to dogs and cats, with a mean injury rate of . per . persons a year from to [ ]. older persons above had the highest injury rates ( . for those – , and . for those and older), twice as high as those between and ( . ). a case series from australia also reported fractures to elderly individuals who were at least aged [ ]. most of the injured were women, and individuals commonly tripped over the pets or fell while bending down to feed them. the pets were most commonly dogs and cats, but they also included birds, a goat, and a donkey. other harms may be present, as well. pets can be expen- sive, time-consuming, and complex to care for. the average lifetime cost of an average-sized dog can be $ , and a cat $ , [ ]. the pets need adequate food, housing, hygiene, and veterinary care [ ]. elderly persons may, because of physical or cognitive limitation, be less able to provide such care than younger persons. in addition, the pets might damage an elderly person’s property, although there are no reports in the published medical literature. pets that are not safeguarded properly by their owners might also be a threat to other people and to the environment. the pets could potentially injure others, harm their property, or create fear or mistrust. the animals might damage the environment (e.g., destroying animals and plants, creating waste). institutionalized elderly may also be less able to interact appropriately with animals. one qualitative report of the reactions of staff to an institutional cat mascot stated that residents placed the cat in garbage and toilet and nearly ran over its tail with wheelchairs [ ]. animals have the potential to cause human infection and trauma. concern about human infections caused by pets has been mentioned as a possible adverse consequence to pet ownership in the elderly [ ]. greater than different zoonotic infections exist [ ]; however their exact incidence in the elderly who own pets or participate in animal-assisted treatments has not been documented and remains unknown. similarly, there may be traumatic injury from animal bites or scratches, but similarly, how frequently this takes place as well as the impact of any events is uncertain. the aforementioned report of an institutional cat mascot mentioned that a cat scratched a patient but did not give further details as to this or other human injuries [ ]. pets might also cause psychological harm. humans can become very attached to their pets, and when they lose them, they may undergo grief reactions similar to those with loss of other people [ , ]. the results of any investigations of such losses on human health in the elderly have not been published. . future directions and conclusions preliminary studies have suggested the potential benefits of animals on the physical and psychological health in humans. despite over four decades of research, these studies remain preliminary. they are compounded by methodologic problems including small sample size and lack of adequate controls and blinding. a review of animal research more than a decade ago outlined barriers [ ] that still need to be overcome, including access of animals to subjects in institutional settings, fear of zoonotic diseases, lack of standardized survey instruments, and recruitment of animal handlers. there have yet to be blinded animal investigations. in addition, the potential influence of the differences in demographic characteristics of human subjects (e.g., differences in education, ethnicity, and income) remains uncertain. in one study, elderly latino pet owners, mean age , responded to a survey of their attitudes toward their dogs and health [ ]. two-thirds considered the dogs to be their “best friends” and “reason for getting up in the morning” and their health to be better “than most people,” and seventy-five percent deemed their health “excellent.” future investigations can clarify such influences. thus far, studies on the effects of animals on both mental and physical health have reported modest benefits. trials of animal-assisted therapy demonstrated improvements in current gerontology and geriatrics research table : potential benefits and risks of animals in the elderly. potential benefits potential harms increased physical activity cost improved survival in cardiovascular disease injury to self improved circulatory hemodynamic responses injury to others less behavioral disturbance in demented patients damage to property improved socialization in demented patients damage to environment weight maintenance in demented patients zoonotic infections less anxiety, fear in depressed patients adverse psychological event (e.g., grief reaction over loss of pet) improved social behavior in schizophrenics adverse social event (e.g., friends, neighbors fear pet) less loneliness greater rehospitalization rate in acute coronary syndrome patients behavioral symptom scores in small numbers of subjects of limited duration. investigations on the influence of animals on physical health, particularly epidemiological studies, that imply that the presence of animals can reduce cardiovascular risk, are more robust methodologically, but prospective trials demonstrating clinical benefit still need to be performed. new uses of animals may be piloted in the future. for example, in one preliminary report, a dog was trained to detect human melanomas by smell [ ]. the use of animals as pets and in therapy may also have harms, but their incidence is rare, and these hazards have been even less well documented than the benefits. there has been no formal determination if whether these benefits outweigh the costs of feeding and caring, which are listed for comparison in table . however, many reports describe participants’ subjective positive feelings towards animals. these positive subjective feelings that people have toward animals together with growing evidence of a potential role in the treatment of cardiovascular disease may motivate their continued use of therapy and ownership. conflict of interests the authors declare that there is no conflict of interests regarding the publication of this paper. references [ ] h. herzog, “the impact of pets on human health and psy- chological well-being: fact, fiction, or hypothesis?” current directions in psychological science, vol. , no. , pp. – , . 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[ ] t. e. catanzaro, “section introduction: human-animal bond and tertiary prevention,” american behavioral scientist, vol. , no. , pp. – , . wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ oncology letters : - , abstract. to assess the efficacy of the additional treatment of transcatheter arterial chemoembolization (tace) to percu- taneous ethanol injection (pei) therapy for relatively small hepatocellular carcinomas (hccs), a multicenter randomized control study (rct) was performed. we conducted an rct and follow-up study during the enrollment period from to . newly diagnosed patients with one to three hcc tumors measuring from to cm ( cm maximum) in diameter were enrolled. a total of patients initially underwent a combi- nation tace-pei or pei-alone therapies at eight randomly assigned japanese hospitals. however, patients withdrew. of the remaining patients, were treated with the combina- tion tace-pei therapy and with pei therapy alone. the patients were observed over several months [median (inter- quartile range) . ( . ) months]. there were no significant differences in the background of the patients between the two groups. among the patients treated with tace-pei, the devel- opment of a local residual tumor was of significantly lower occurence, compared to the group receiving pei alone ( . and . %, respectively; p= . ). however, the mean cancer-free time (absence of local or multiple nodule recurrence) or patient survival time was not significantly different between the two groups [pei alone vs. tace-pei: cancer-free time . ( % ci . - . ) vs. . months ( % ci . - . ); survival time . ( % ci . - . ) vs. . months ( % ci . - . )]. although the combination of tace and pei had significant effects on the local tumor control, no efficacy of the addition of tace to pei was noted in the prognosis among patients with relatively small hcc tumors. introduction in japan, hepatocellular carcinoma (hcc) is a major health concern with an incidence of two million patients infected with hepatitis c virus (hcv) and with - % of patients with liver cirrhosis developing de novo hcc every year. moreover, approximately , patients with hcc succumbed to the disease in . a total of - % of hcc patients are infected with hcv and approximately % with hepatitis b virus (hbv) ( ). it is estimated that the number of hcc patients may increase in the next years. therefore, the establishment of effective treatment modalities for hcc is imperative. percutaneous ethanol injection (pei) therapy is a useful type of therapy for patients with small hcc, particularly for those with poor hepatic functional reserve ( , ). pei therapy involves the injection of absolute ethanol into hcc using ultrasound guidance, resulting in cellular dehydration, coagulation necrosis and vascular thrombosis within the treated tumor ( ). patient outcome for pei therapy is comparable to the outcome of patients who undergo surgical resection ( , ). however, the recurrence of primary hccs after pei is common, and the rate of local residual recurrence after pei therapy is reported addition of transcatheter arterial chemoembolization decreased local recurrence but had no survival benefit to percutaneous ethanol injection therapy for patients with small hepatocellular carcinoma: a multicenter randomized control study akira mizuki , masayuki tatemichi , , nobuhiro tsukada , ryousuke nagamatsu , mitsuhiko kawaguchi , tatsuya itoshima , shigeki maruyama , atsuhiko satou , yasuhisa imari , toshiharu kawatoko , junya shimono and hiroshi nagata saiseikai association for the study of liver diseases (sasld) department of internal medicine, saiseikai central hospital; department of hygiene and preventive medicine, school of medicine, showa university; department of internal medicine, school of medicine, keio university, tokyo; department of internal medicine, nakatsu saiseikai hospital, osaka; department of internal medicine, okayama saiseikai hospital, okayama; department of gastroenterology, gotsu general hospital, shimane; department of internal medicine, kagawa saiseikai hospital, kagawa; department of internal medicine, fukuoka prefecture yahata general hospital; department of internal medicine, fukuoka saiseikai hospital, fukuoka, japan received april , ; accepted june , doi: . /ol_ correspondence to: dr akira mizuki, department of internal medicine, saiseikai central hospital, tokyo, japan e-mail: amizuki@highway.ne.jp key words: hepatocellular carcinoma, embolization, ethanol injection, combination therapy, multicenter randomized controlled study mizuki et al: tace and pei combination therapy against hcc to range from to % ( - ). therefore, to control local recurrence, combination therapy with transcatheter arterial chemoembolization (tace) and pei has been proposed. tace is widely used and is considered to be an effective conservative treatment for hccs. embolization of the hepatic artery results in selective ischemic necrosis of the tumor tissue ( ). however, complete necrosis of the tumor by embolization of the hepatic artery alone is almost impossible to achieve ( ). a number of clinical studies examined the non-surgical treatment of small hccs including tace alone, pei alone and combined therapy with tace and pei ( - ). certain inves- tigators reported the superior efficacy of combined tace-pei therapy, compared to pei alone. koda et al attempted to clarify the efficacy of combination tace-pei therapy in patients with small hccs (< cm) using randomized assign- ment ( ). the results, however, revealed that patient survival was not different between combined tace-pei therapy and pei therapy alone. stratified analysis showed that for patients bearing hcc tumors < cm, combined tace-pei therapy was superior to pei alone. consequently, the efficacy of additional tace to pei as a recommended treatment for hccs > cm has yet to be determined. thus, using multicenter randomized assignment, this study was conducted to examine the efficacy of tace-pei therapy instead of pei alone for patients with relatively small hcc tumors, - cm in diameter. patients and methods study design. this was a multicenter randomized control (rct) study. the study protocol was approved by the review board of each hospital, and all patients provided informed written consent. patients. between july and april , patients diagnosed with small hccs for the first time were eligible to be enrolled as study subjects. the criteria for enrollment to this study were: i) age < years; ii) hcc nodules measuring - cm in maximum diameter; iii) number of hcc nodules ≤ ; iv) no portal thrombosis or extrahepatic metastasis; v) hypervascular nodules, as determined by dynamic computed tomography (ct) scan and/or arteriography; and vi) no previous treatment for hcc prior to entry. exclusion criteria included any severe comorbidity (such as uncontrolled diabetes mellitus, heart failure, renal failure or other cancer), as well as any patient who was unable to understand the protocol or manage self-care. the diagnosis of hcc was made by dynamic ct and/ or abdominal sonography. to assist the diagnosis of hcc, a needle biopsy was performed in all patients. tumor vascu- larity was also evaluated by dynamic ct and/or angiography from the hepatic artery. randomization was performed using a sealed-envelope method. patients were divided into two groups: the tace-pei group, in which patients were treated with tace followed by pei and the pei-alone group, in which patients were treated with pei therapy alone. treatment procedure. patients with hcc were treated by trained specialists at each institution. the precise techniques of ethanol injection are described elsewhere ( ). briefly, after local anesthesia, one -gauge needle was inserted into the lesion under ultrasound (us) guidance, and absolute ethanol was injected. in one session, - ml of ethanol was injected into several sites in and around the lesion according to the lesion size. after the procedure, the patients remained in bed for h. this procedure was performed twice a week. the treatment was repeated until dynamic ct demonstrated entire tumor necrosis. in addition, tace [precise techniques are described else- where ( , )] was performed by super-selectively introducing a catheter into the hepatic artery that fed the tumor. a mixture of an ionized oil and doxorubicin hydrochloride ( . - . mg per kg of body weight) was injected, followed by a gelatin sponge. diagnosis of the remaining tumors was based on image findings, particularly dynamic ct. in addition, the positivity of serum α-fetoprotein (afp > ng/ml) or serum protein induced by vitamin k absence ii (pivka-ii > mau/ml) facilitated the diagnosis. follow-up. the patients were under regular observation for the detection of recurrence by measurement of tumor markers (afp and/or pivka-ii), ultrasonography and/or dynamic ct scans every months. the primary endpoint was a recurrence indicated in any of the above examinations. the secondary endpoint was patient death. the recurrence of hcc was clas- sified as local residual or new nodular recurrence in lesions other than the tumor treated. local recurrence was defined as tumors within or adjacent to the tumor being treated. the recurrent tumors were treated with pei or tace-pei. in the pei-alone group, however, tace was performed when ≥ recurrent tumors developed. statistical analysis. the statistical significance of the patient characteristics between the two groups was determined by the chi-square or mann-whitney u test. the mean cancer-free time and survival time were calculated using the kaplan-meier method, and significance was determined by the generalized wilcoxon's test. p< . was considered to be significant. results a total of patients fulfilled the criteria for enrollment in this study. patients were stratified and randomized into two treatment arms: patients were treated with a combination of tace and pei (tace-pei group) and received only pei therapy (pei-alone group). however, three patients withdrew from the study, and the final number of patients analyzed was (tace-pei group, ; pei-alone group, ). of the patients, had cirrhosis and had chronic hepatitis. hepatitis b surface antigen was positive in of the patients ( . %) and the hcv antibody was positive in of the patients ( . %). no significant differences were noted between the two groups in the baseline characteristics (table i). the median (interquartile range) follow-up period was . ( . ) months [tace-pei group, . ( . ) months and pei alone group, ( . ) months]. primary endpoint: recurrence. tumor recurrence was detected in patients treated with pei alone and in patients oncology letters : - , treated with tace-pei. the cumulative cancer-free time was calculated using the kaplan-meier method (fig. ). the mean cancer-free time was . months ( % ci . - . ) for the pei alone group and . months ( % ci . - . ) for the tace-pei group. no significant difference was found between the two groups. however, the pattern of recurrence was significantly different (p< . ). during follow-up, the detec- tion of a local residual lesion was observed in of nodules ( . %) in the tace-pei group and in of nodules ( . %) in the pei-alone group. no local residual tumor was detected after years of follow-up in the tace-pei group. on the other hand, new nodular recurrences were observed in of patients ( . %) in the tace-pei group and in of patients ( . %) in the pei-alone group. secondary endpoint: death. of the patients ( . %), treated with tace-pei and of the patients ( %) treated with pei alone succumbed to the disease during the table i. clinical characteristics according to the treatment group. pei (n= ) tace-pei (n= ) p-value age (years) (mean ± sd) . ± . . ± . ns gender (m/f) / / ns etiology of liver disease hbv hcv hbv + hcv nbnc ns chronic hepatitis cirrhosis ns albumin (g/dl) . ± . . ± . ns total bilirubin (mg/dl) . ± . . ± . ns alt (ui/l) ± ± ns ast (ui/l) ± ± ns prothrombin time (%) ± . ± ns α-fetoprotein (ng/ml) [median (range)] ( - ) ( - ) ns tumor lesions single nodule - nodules ns greatest tumor dimension (mm) . ± . . ± . ns tace, transcatheter arterial chemoembolization; pei, percutaneous ethanol injection; m, male; f, female; ns, not significant; hbv, hepatitis b virus; hcv, hepatitis c virus; nbnc, non hbv-non hcv; alt, alanine aminotransferase and ast, aspartate aminotransferase. figure . comparison of the cumulative cancer-free time between the group that received tace-pei and the group that received pei therapy alone. the mean cancer-free time was . months ( % ci . - . ) for the pei-alone group and . months ( % ci . - . ) for the tace-pei group. no significant difference was noted between the two groups. figure . comparison of the survival rates between the tace-pei group and the pei-alone group. the mean survival time of the tace-pei group was . months ( % ci . - . ) and that of the pei-alone group was . months ( % ci . - . ). no significant difference was found between the two groups. mizuki et al: tace and pei combination therapy against hcc follow-up period. in the tace-pei group, causes of death included development of hcc in patients, variceral bleeding in patients and hepatic failure in patients. in the pei-alone group, causes of death were development of hcc in patients, hepatic failure in patients and other diseases (tuberculosis) in patient. the cumulative survival curves of the two groups are shown in fig. . the mean patient survival time of the tace-pei group was . months ( % ci . - . ) and that of the pei-alone group was . months ( % ci . - . ). no significant difference was noted between the two groups. adverse events. in all cases, serious adverse effects or complications, such as acute liver failure, liver infarction, abscess, cholecystitis, gastrointestinal mucosal lesions, pulmonary embolism, variceral bleeding, iatrogenic dissec- tion or perforation of the celiac artery and its branches, were not related to treatment with tace and/or pei. discussion this rct study failed to show the anticipated efficacy of tace-pet therapy compared to pei treatment alone on survival time for patients with relatively small hccs of - cm in diameter. together with the previous rct result by koda et al, it was found that a tumor size smaller than cm may be critical in obtaining significant effectiveness by combining tace therapy to pei ( ). the present study showed marked differences in recur- rence patterns after initial treatment. our results indicate that tace-pei is superior to pei therapy alone regarding local tumor control. the addition of tace, however, evoked new tumors in different lesions other than the original tumor. we believe that the induction of growth factors such as vegf and hgf ( - ), due to ischemia by tace, are involved in the development of new nodules. a liver with hccs larger than cm in diameter may be prone to develop hccs in whole liver lesions. stimulation by tace may enhance the progression of small nodules that are not detected by ct examination. when the stage of hcc is evaluated using more sensitive methods, such as ct during arterial portography and/or superparamag- netic iron oxide-enhanced gradient-recalled echo mri ( - ), extremely small focal nodules can be detected. the main causes of patient death in the present study were related to hepatic failure and not to tumor progression in either group. although it is reported that tace improves tumor control in large-size hccs, our data suggest that the prog- nosis of patients with hccs of - cm in diameter depends on residual liver function, and not on tumor progression. no statistical significance was found in the present study which showed that the mean patient survival time was shorter in the tace-pei group than that in the pei-alone group. therefore, local tumor control may not directly contribute to patient survival time. a number of limitations should be noted. although patients were enrolled at different sites, a relatively small number of patients was unable to participate, and the follow-up period was short. all but two tumors were virus-related hccs. recently, the incidence of hcc from non-alcoholic steato- hepatitis has been on the increase and its characteristics are reportedly different from hccs resulting from hcv and hbv ( ). however, this study used random assignment, providing us with important information regarding the treatment of relatively small-size virus-related hccs. for hccs of - cm in diameter, the additional tace to pei did not markedly improve patient survival. moreover, the additional tace treatment appeared to shorten the patient survival time as the treatment did not (at least notably) damage residual liver function and stimulated new tumor growth in lesions other than the primary one. additionally, other modalities, such as radio frequency ablation (rfa), are available. such treatment modalities are considered to be superior to pei in local tumor control and attack tumors in a pin-point manner ( - ). thus, our data suggest that rfa alone as well as pei may be recommended in the treatment of relatively small hccs of - cm in diameter. acknowledgements we would like to thank dr hidetsugu saitou who supervised the study. references . okita k: clinical aspects of hepatocellular carcinoma in japan. intern med : - , . . livraghi t, festi d, monti f, salmi a and vettori c: us-guided percutaneous alcohol injection of small hepatic and abdominal tumors. radiology : - , 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. . tanaka k, okazaki h, nakamura s, et al: hepatocellular carcinoma: treatment with a combination therapy of transcath- eter arterial embolization and percutaneous ethanol injection. radiology : - , . . koda m, murawaki y, mitsuda a, et al: combination therapy with transcatheter arterial chemoembolization and percutaneous ethanol injection compared with percutaneous ethanol injection alone for patients with small hepatocellular carcinoma: a randomized control study. cancer : - , . . li x, feng gs, zheng cs, zhuo ck and liu x: expression of plasma vascular endotherial growth factor in patients with hepatocellular carcinoma and effect of transcatheter arterial chemoembolization therapy of plasma vascular endothelial growth factor level. world j gastroenterol : - , . . suzuki h, mori m, kawaguchi c, adachi m, miura s and ishii h: serum vascular endothelial growth factor in the course of transcatheter arterial embolization of hepatocellular carcinoma. int j oncol : - , . . kobayashi n, 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small hepatocellular carcinoma in cirrhosis: randomized comparison of radio-fre- quency thermal ablation versus percutaneous ethanol injection. radiology : - , . . livraghi t, goldberg sn, lazzaroni s, meloni f, solbiati l and gazelle gs: small hepatocellular carcinoma: treatment with radio-frequency ablation versus ethanol injection. radiology : - , . . brunello f, veltri a, carucci p, et al: radiofrequency ablation versus ethanol injection for early hepatocellular carcinoma: a randomized controlled trial. scand j gastroenterol : - , . clinical diabetes • volume , number , b r i d g e s t o e x c e l l e n c e impact of activity participation and depression on glycemic control in older adults with diabetes: glycemic control in nursing homes julie l. bellissimo, oms iv, bs, rachel m. holt, do, stephanie m. maus, oms iv, bs, tracy l. marx, do, frank l. schwartz, md, and jay h. shubrook, do i n the united states, . % of adults ≥ years of age have diabetes. this population is also burdened with an increased cumula- tive risk of multiple complications. the risk of these complications may be reduced with a reduction in a c level. however, the risks of intensive glycemic control, such as hypogly- cemia, may outweigh the benefits in elderly patients with diabetes. glycemic control in this population with diabetes is often complicated by the presence of comorbidities and a potential inabil- ity to adhere to treatment regimens. according to ciechanowski et al., “diabetes is considered to be the most psychologically and behav- iorally demanding of the chronic medical illnesses.” typically, % of diabetes management is per- formed by patients. as patients age, cognitive dysfunction, functional disabilities, polypharmacy, and depression all may prevent them from adhering to treatment plans. a diagnosis of depression in the elderly may decrease adherence to exercise, diet, and medication regimens. in a study by rush et al., people with diabetes and depression were less likely to achieve their blood glucose goals. thus, a diagnosis of depression appears to negatively affect glycemic control. – in elderly adults with diabetes, depression can reduce quality of life, increase health care expenditures, and decrease adherence to medica- tion and diet regimens. katon et al. found there to be a significantly higher mortality among depressed patients with type diabetes than among nondepressed patients. furthermore, rubin and peyrot have stated that “psychosocial variables [such as depression] are often stronger predictors of medi- cal outcome such as hospitalization and mortality than are physiologic and metabolic measures [such as the presence of complications, bmi, and a c].” elderly adults with diabetes have double the normal risk for depression. there is evidence that, at admittance to extended care facilities, the incidence of depres- sion increases. in a pilot study by holt et al., % of people with diabetes in extended care facilities also suffered from depression. this emphasizes the importance of diag- nosis and treatment of depression in elderly people with diabetes, espe- cially in light of the increased risk. the american diabetes association recommends that psy- chosocial assessment be a routine component of the medical manage- ment of people with diabetes and that a change in the medical regimen should prompt screening for psycho- social problems such as depression. symptoms of depression in older adults can be reduced effectively with pharmacological and psycho- logical treatments. antidepressant medications are the most common treatment for depression in older adults. this trend is also seen in extended-care residents with diabetes. holt et al. found that % of residents with diabetes received pharmacological treatment for depression. although antidepressant medi- cations may reduce depressive symptoms in elderly adults, it has been suggested that this may not be an ideal treatment for depressed resi- dents. the frailty of this population may make them more susceptible to the side effects of these medica- tions. thapa et al. found that nursing home residents who began therapy with tricyclic antidepres- sants had a rate of falls twice that of nonusers. furthermore, residents started on selective serotonin- reuptake inhibitors had a rate of falls % higher than nonusers. therefore, in addition to pharmaco- logical and psychosocial treatment, it is also important to consider the benefits of behavioral interventions in the treatment of depression. behavioral intervention is based on a theory that depressed individu- als are unable to perceive positivity in their environment. the treatment focuses on increasing the number of positive activities. increasing volume , number , • clinical diabetes b r i d g e s t o e x c e l l e n c e positive events as a means of behav- ioral intervention has been shown to improve symptoms of depression in elderly adults. furthermore, meeks et al. found that, as nursing home residents increased their participa- tion in activities, they experienced a clinical reduction in the symptoms of depression. however, this study is not specific to older adults with diabetes. many extended-care facili- ties recognize the impact activity participation can have on the health of their residents and offer a variety of activities. however, as meeks et al. summarized, “general one-size- fits-all programming that is often found in nursing homes may not be an effective means of engaging the majority of residents in mean- ingful activities to improve their quality of life. instead, efforts to tailor programming and especially to tailor individual interventions for depressed residents may be needed.” the purpose of this study was to determine whether residents of extended-care facilities with diabetes and a concurrent diag- nosis of depression have poorer glycemic control than those who are not depressed. this study also investigated the impact that activ- ity participation has on glycemic control. research design and methods this project was approved by the ohio university institutional review board, and a letter of agreement was obtained from each of the participat- ing extended-care facilities. site recruitment the investigators contacted extended- care facilities throughout ohio and west virginia. facilities that expressed interest in participating in the study completed an agreement to be enrolled. once completed, each facility’s director of nursing was sent all of the documents used for the study. these included a nursing home diabetes care protocol, a hypoglyce- mia/hyperglycemia reporting form, a nutritional reporting form, and a chart face sheet. these documents were reviewed with each director of nursing to clarify any questions. table . abstracted data and classification of activities category parameter collected general age, type of diabetes lab tests and general care number of fingersticks per day, incidence of hypoglycemia and hyperglycemia per month, percent- age of target glucose levels reached per month, a c goal reached (yes/no), lowest a c reached in past month, number of a c measurements per year, electrocardiogram in past year (yes/no), blood pres- sure recorded (yes/no), blood pressure at goal (yes/no), lipids checked annually (yes/no), lipids at goal (yes/no), microalbumin checked in past year (yes/no), weight checked monthly (yes/no) exams and consultations foot exam in past year (yes/no), podiatrist consultation (yes/no), annual eye exam (yes/no), psycholo- gist consultation (yes/no) medications and vaccinations flu and/or pneumococcal vaccine (yes/no), ace inhibitor/angiotensin ii receptor blocker (yes/no), aspirin (yes/no), oral antidiabetic medications (yes/no), insulin (yes/no), analog insulin (yes/no), non- analog insulin (yes/no), sliding-scale insulin regimen (yes/no), all antidiabetic medications, treatment for depression other hypo- and hyperglycemic protocols, physician type, diagnosis of depression skills activities arts and crafts, cooking group, current events, educational speakers, gardening, homemaking, intel- lectual residents’ council, music, reading/writing, sensory awareness/stimulation, word games/puzzles spiritual activities bible study, church-related spiritual activity social activities -on- visits, beauty shop, bingo, card games, family visits, movies, outdoors, parties, patio chats, rem- iniscing, smoking, snack-and-chat, socializing, talking/phone, theater group, trip/shopping, visitors physical activities exercise/sports, parachute, physical therapy, walking other activities bird watching/feeding, hand rub/lotion, therapy, helping others, nail painting, people-watching, pet therapy, spa day, special programs/tv, van ride clinical diabetes • volume , number , b r i d g e s t o e x c e l l e n c e patient inclusion and exclusion criteria the facility residents had to have had diabetes for at least year and to have been a resident of the facility for at least months to be included in the study. residents with type or type diabetes were included regardless of their treatment plans. a diagnosis of depression was based on a docu- mented diagnosis in residents’ charts. chart review/data abstraction each director of nursing provided a list of eligible residents. all eligible skilled-nursing and assisted-living residents had their charts reviewed. a key code was developed for the facili- ties and qualifying residents. the key code was documented on a microsoft excel spreadsheet and kept on a sepa- rate password-protected computer. activity participation was recorded as the number of activities each resident attended in a -month period and was then converted into hours/month. unless otherwise spec- ified by the facility, each activity was considered to take minutes. this assigned duration was used because most of the activities at the facili- ties with recorded times were – minutes in length. it is possible that some activities may have taken more or less time, thus skewing the results. at some facilities, records were only received for a period of week. when this occurred, the hours/ month estimate was extrapolated from residents’ weekly activity participation. activity participation was recorded in five separate categories: spiritual, skills, physical, social, and other (table ). any recorded religious activity was considered a spiritual activity. an activity was categorized as a skills activity if it required cognitive ability. a social activity was any non-skills or non-physical activity that involved interaction with other residents, family members, nurses, or staff. if an activity did not fit into any of the other four categories, it was classified as “other.” additionally, baseline information concerning care of each resident (table ) and demographic information, includ- ing sex, race, and age, were also obtained from eligible charts. statistical analysis statistical analysis was completed using spss version (spss inc., chicago, ill.). pearson χ was used to test the significance between a c goal and diagnosis of depression. the t tests were used to assess whether there was a difference in the subjects’ percentage of glucose control for those with or without a diagnosis of depression. the t tests were also run to determine if there was a statistical difference between the mean total activity of those residents who met a c goals and those who did not and for activity subcategories. levene’s test of equality of variances and the t test for equality of means were also used to analyze the data. statistical significance was determined at p ≤ . . study results descriptive data a total of charts were reviewed, including males ( %) and females ( %). the majority ( ) of subjects were white ( . %). subjects’ ages ranged from to years, with a mean of . years. most subjects ( ) had a diagnosis of type dia- betes ( %), whereas only eight ( %) were diagnosed with type diabetes, and five ( %) had an unspecified dia- betes diagnosis. eighty-five subjects ( %) had a diagnosis of depression, and of those, residents ( %) received pharmacological treatment for depression (table ). glucose control blood glucose was monitored for subjects ( %). the number of fingersticks per day ranged from to . nineteen subjects ( %) received one fingerstick daily, subjects ( %) received two to four fingersticks daily, and two subjects ( %) received six fingersticks daily. thirty-five subjects ( %) received less than one fingerstick daily. for those who had their glucose monitored, subjects ( %) had a total of hypoglycemic episodes, of which were considered mild (blood glucose – mg/dl) and of which were severe (blood glu- cose < mg/dl). the range of these events was – mg/dl. twelve residents had severe hypoglycemic reports, and reported mild hypo- glycemic events. forty-one of the residents who experienced a hypoglycemic epi- sode were on insulin ( %), whereas the other four residents ( %) were not on insulin. furthermore, of the residents who experienced a hypoglycemic episode did not have a diagnosis of depression, whereas were depressed. the mean low- est a c for those who experienced a hypoglycemic event was . %, whereas for those who did not expe- rience a hypoglycemic event, it was . %. only subjects ( %) had a written hypoglycemic protocol in their orders. however, subjects ( %) had a hyperglycemic proto- col (table ). ninety-one subjects ( %) had recorded hyperglycemic incidences. for this study, we used a liberal- ized blood glucose goal of – mg/dl. most of the glucose read- ings ( %) were at this goal, with a range of – % for a -month period. one hundred and thirty-nine subjects ( %) met the liberalized extended-care a c goal of < . %, with a lowest a c mean of . % for residents without depression and . % for those with depression. there was no significant difference between the mean percentage of glu- volume , number , • clinical diabetes b r i d g e s t o e x c e l l e n c e cose control by ) fingerstick glucose readings (t df = = − . , p = . , % ci − . to . ) or ) a c goal achievement (χ df = = . , p = . , odds ratio = . , % ci . – . ) in those with or without depression. activity participation total activity participation ranged from to hours/month. subjects participated in a mean of hours of activity in month. subjects partici- pated in more social activities than any other activity subcategory, with an average of . hours/month. skill activities had the second-highest par- ticipation at an average of . hours/ month (range – hours). subjects participated in physical activities on average . hours/month and in spiritual activities . hours/month. the mean time spent in the “other” subcategory was . hours/month (table ). subjects who participated in more total activity hours were significantly more likely to achieve a c goals (t df = . = − . , p < . , % ci − . to − . ). however, no individual activity subcategory was significantly related to a c level. furthermore, there was no significant correlation between total activity participation (r = , n = , p = . ), or any of the subcategory activities and percentage of blood glucose at goal. finally, there was no significant relationship between the total number of activity hours or any of the activity subcategories and hypoglycemic events. discussion and conclusions in this study, a diagnosis of depres- sion did not appear to result in poorer glucose control for adults with diabetes in extended-care facilities. previous research has shown that a diagnosis of depression is associ- ated with poorer glucose control. – , however, these studies did not explain the mechanisms through which depression caused an increase in a c. depression is associated with decreased compliance with medica- tions, decreased physical activity, and increased inflammatory cyto- kines, which interfere with insulin action and result in hyperglycemia. medication compliance was not an issue in these elderly adults, who depended on the care of nurses and staff at the facilities. although a diagnosis of depres- sion did not affect a c levels, residents who participated in more hours of activity were more likely to be at a c target levels. if it is assumed that the hours of activity participation recorded is representa- tive of patients’ activity participation in previous months, it can be concluded that subjects who par- ticipated in more hours of activity were more likely to obtain an a c level at goal. recognizing that a c table . participant and hypoglycemic/hyperglycemic event data frequency percentage (%) total charts male female caucasian . other race . type diabetes type diabetes unspecified diabetes type diagnosis of depression pharmacological depression treatment residents with at least one blood glucose reading < mg/dl * residents with mild hypoglycemia (blood glucose – mg/dl) * residents with severe hypoglycemia (blood glucose < mg/dl) * total number of hypoglycemic events/ month — total number of mild hypoglycemic events/ month — total number of severe hypoglycemic events/month — residents with hypoglycemia protocols * residents with at least one blood glucose level > mg/dl * residents with hyperglycemia protocol * residents with an a c < % * *percentage of subjects who had their blood glucose monitored. clinical diabetes • volume , number , b r i d g e s t o e x c e l l e n c e is an estimated average, people who experience hypoglycemic or hyperglycemic episodes may have an acceptable a c, but still be in poor glycemic control. none of the subcategories of activity had a significant relationship with subjects’ a c or percentage of blood glucose readings at goal. recently it was reported that a combination behavioral approach for depression in adults with type diabetes not only was effective in treating depression, but also sig- nificantly reduced a c levels and fasting glucose levels from baseline to post-treatment and from base- line to the -month follow-up. participants in that study engaged in minutes of aerobic activity each week along with cognitive behavioral therapy. although it appears from the study mentioned above on combina- tion therapy that physical activity does have an effect on glucose con- trol, our study suggests there may be a more complex relationship. because none of the subcategories had any significant relationship with a c levels at goal, this may imply that participation in any activity, not only physical activity, has positive effects. our study showed that the quantity of activity participation may be more important than the type of activity. the application of this information may be helpful when nurses and family members encourage residents to participate in facility activities. because it does not appear to matter what type of activity is involved but rather the quantity of activity in which patients participate, it may be advantageous to encourage residents to participate in activities they enjoy rather than focusing on one specific type of activity. one of the most significant find- ings in our study was the number of subjects in these facilities with hypoglycemic events (blood glucose < mg/dl). twenty-seven percent of subjects in this study had at least one hypoglycemic event in a -month period, and % had at least one severe hypoglycemic event. despite the high incidence and danger of hypoglycemic events, only % of subjects had a hypoglycemic proto- col ordered. the results found in this study suggest that hypoglycemic events were not related to the amount or type of activity in which patients participated. however, they sug- gest that all residents with diabetes in extended-care facilities who are on medications that can cause hypoglycemia should have specific hypoglycemia management proto- cols to prevent significant cognitive injury, falls, and rebound hypergly- cemia from inappropriate correction of hypoglycemia. the results of this study are limited by several factors. primarily, the number and heterogeneity of subjects may not be representative of all extended-care facility residents with diabetes. a larger poll of data may have yielded different relation- ships among depression, amount of activity participation, and glucose control. most of the facilities had standard activity sheets used to record residents’ activity participa- tion. in the facilities that did not use these sheets, it appeared that either fewer activities were offered or the activities were not recorded. however, even in facilities that used standardized sheets, the recording of activities varied greatly. some facili- ties had detailed descriptions of each activity, whereas others simply had a checklist. furthermore, many activities could have fallen into more than one category. for example, garden- ing was considered to be a skills activity. however, if done in a group environment, it could have also been considered a social activity. to address this, the authors developed pre-specified categories for this study (table ). despite these limitations, this study yielded important results that may be used in the future to improve the care of extended-care residents with diabetes. first, the amount of activity in which residents partici- pate may have more impact on their health than the type of activity. second, a diagnosis of depression was not related to glycemic control in this select population. finally, this study showed an unacceptable high incidence of hypoglycemic events in this population, and national requirements for standard hypogly- table . activity participation activity frequency maximum participation (hours) average participation (hours) total * . social . skills . other . physical . spiritual . *type of activity was not reported for residents. volume , number , • clinical diabetes b r i d g e s t o e x c e l l e n c e cemic protocols for all residents with diabetes should be adopted. acknowledgments the authors would like to acknowl- edge the ohio university heritage college of osteopathic medicine (oucom) research and scholarly advancement fellowship and the centers for osteopathic research and education research office for fund- ing and specifically godwin dogbey, phd, at oucom for statistical support. references american diabetes association: diabetes statistics [article online]. available from www.diabetes.org. accessed june california healthcare foundation/ american geriatrics society panel on improving care for elders with diabetes: guidelines for improving the care of the older person with diabetes mellitus. j am geriatr soc : – , stratton i, adler a, neil h, matthews d, manley s, cull c, hadden d, turner r, holman r: association of glycaemia with macrovascular and microvascular complica- tions of type diabetes (ukpds ). bmj : – , munshi m: managing the “geriatric syndrome” in patients with type diabetes. consult pharm (suppl. b): – , ciechanowski p, katton w, russo j: depression and diabetes: impact of depres- sive symptoms on adherence, function, and costs. arch intern med : – , rush w, whitebird r, rush m, solberg l, o’connor p: depression in patients with diabetes: does it impact clinical goals? jabfm : – , lustman p, griffith l, freedland k, kissel s, clouse r: cognitive behavior therapy for depression in type diabetes mel- litus. ann intern med : – , de groot m, shubrook j, kushnick m, doyle t, merrill j, mcglynn m, knutson m, schwartz f: program active: depres- sion treatment among appalachians with type diabetes [abstract]. diabetes (suppl. ):a , wang m, tsai p, chou k, chen c: a systematic review of the efficacy of non- pharmacological treatments for depression on glycemic control in type diabetes. j clin nurs : – , katon w, rutter c, simon g, lin e, ludman e, ciechanowski p, kinder l, young b, von korff m: the association of comorbid depression with mortality in patients with type diabetes. diabetes care : – , rubin r, peyrot m: quality of life and diabetes. diabetes metab res rev : – , meeks s, young c, looney s: activity participation and affect among nursing home residents: support for a behavioral model of depression. aging mental health : – , holt r, schwartz f, shubrook j: diabetes care in extended-care facilities. diabetes care : – , american diabetes association: executive summary: standards of medical care in diabetes— . diabetes care (suppl. ):s –s , meeks s, looney s, van haitsma k, ten l: be-activ: a staff-assisted behavioral intervention for depression in nursing homes. gerontologist : – , thapa p, gideon p, cost t, milam a, ray w: antidepressants and the risk of falls among nursing home residents. n engl j med : – , julie l. bellissimo, oms iv, bs, and stephanie m. maus, oms iv, bs, are medical students at ohio university heritage college of osteopathic medicine (oucom) in athens, ohio. rachel m. holt, do, is a resident in the department of emergency medicine at wright state university boonshoft school of medicine in dayton, ohio. tracy l. marx, do, and jay h. shubrook, do, are associ- ate professors of family medicine in the department of family medicine at oucom. frank l. schwartz, md, is a professor of specialty medicine in the department of specialty medicine at oucom. breast cancer: exploring the facts and holistic needs during and beyond treatment healthcare review breast cancer: exploring the facts and holistic needs during and beyond treatment zhi xuan ng , mei shan ong , tamilarasi jegadeesan , shuo deng ,* and celestial t. yap , ,* department of physiology, yong loo lin school of medicine, national university of singapore, singapore , singapore; e @u.nus.edu (z.x.n.); e @u.nus.edu (m.s.o.); phstj@nus.edu.sg (t.j.) national university cancer institute, singapore , singapore * correspondences: phsdes@nus.edu.sg (s.d.); phsyapc@nus.edu.sg (c.t.y.) academic editors: joanne reid and helen noble received: january ; accepted: april ; published: may abstract: breast cancer patients face challenges throughout the journey of diagnosis, treatment, post-treatment, and recovery. the breast cancer patient is exposed to a multidisciplinary team including doctors, nurses, therapists, counselors, and psychologists. while the team assembled together aims to address multiple facets in breast cancer care, the sub-specialized nature of individual professional practices may constrain the overview of patients’ holistic needs and a comprehensive approach to cancer management. this paper aims to provide an overview of the holistic needs of breast cancer patients at each stage of their cancer journey, addressing their complex physical, psychological, and social needs. as every patient is different, cancer care has to be tailored to each patient based on a holistic needs assessment. this paper also explores how support can be provided from the perspectives of the healthcare providers, family members and caretakers. examples of general practices at healthcare institutions worldwide as well as supportive care provided by support groups are discussed. the needs of breast cancer patients extend beyond the resolution of cancer as a disease, and the restoration of health as far as possible is a critical component of healing. understanding the complex issues involved in the journey of breast cancer will aid healthcare providers to be better equipped to sensitively address their concerns and focus on healing the patient holistically. methodology: this paper provides a literature review of validated practices in different countries and elaborates on the holistic needs of patients at various stages of recovery. this review is based on more than a decade of publications sourced from multiple resources including pubmed journal articles; books and official websites of breast cancer organizations. keywords: breast cancer; holistic needs; cancer survivorship . epidemiology and classification of breast cancer breast cancer, a heterogeneous disease in its development and progression, remains the most prevalent female cancer diagnosed worldwide. based on globocan statistics, the incidence of breast cancer has increased from . million in to . million in , which represents a . % increase in the incidence of breast cancer worldwide over this period. moreover, the incidence of breast cancer was observed to vary across different regions worldwide, whereby breast cancer is more prevalent in developed countries compared to less developed countries, at age-standardized rates per , of . and . , respectively. breast cancer is the leading cause of female cancer deaths worldwide, accounting for up to % of all cancer deaths [ – ]. furthermore, mortality has increased steadily from nearly per , total deaths in to about per , total deaths in [ – ]. in singapore, more than % of all cancers diagnosed in women are breast cancers, making it the most common cancer among females [ ]. healthcare , , ; doi: . /healthcare www.mdpi.com/journal/healthcare http://www.mdpi.com/journal/healthcare http://www.mdpi.com http://dx.doi.org/ . /healthcare http://www.mdpi.com/journal/healthcare healthcare , , of numerous risk factors have been shown to associate with the development of breast cancer and include age, reproductive factors, exo- and endogenous hormonal exposures, personal and family history of cancer, and lifestyle and environmental factors such as alcohol consumption and diet [ , ]. genetic and epigenetic alterations such as brca / mutations have also been shown to affect the risk of lifetime breast cancer [ , ] whereby the risks increase to – % for those with brca mutation carriers and – % for brca mutation carriers [ , ]. the classification of breast cancer can be based on both histopathologic and molecular characteristics. histologically, breast cancer is classified into in situ carcinoma, consisting of ductal carcinoma in situ (dcis) and lobular carcinoma in situ (lcis); or invasive carcinoma, which is divided into subtypes [ ]. on the other hand, the molecular classification of breast cancer is based on protein expression patterns involving several markers such as estrogen receptor (er), progesterone receptor (pr), human epidermal growth factor receptor (her ), her and basal cytokeratin [ ]. the differential protein expression gives rise to the molecular classification of breast cancer into different subtypes including luminal a & b, her -enriched, basal-like, claudin-low, and normal breast-like [ ]. . diagnosis and treatment screening via diagnostic imaging technologies such as mammogram, ultrasound and magnetic resonance imaging (mri), and tissue biopsy allows for early detection and diagnosis of breast cancer. management and treatment of breast cancer, depending on clinical staging, tumor biology, and molecular subtype, include surgery, local tissue-targeting radiotherapy, and systemic therapies such as chemo, hormonal, and targeted therapy. in early stages of cancer, the surgical management of breast cancer via lumpectomy (breast-conserving surgery) or mastectomy (surgical removal of breast tissues) with the removal of clear margins of both invasive and non-invasive cancer, is required. systemic therapies may be required as post-surgical adjuvant therapy to enhance disease-free and overall survival, depending on the molecular subtyping and pathology determined by tumor and axillary nodal status. in the more advanced stages, systemic therapies are involved in disease control, palliative management, and improvement of overall survival. in terms of disease control, neo-adjuvant systemic therapy, which is the administration of therapeutic agents before a main treatment, is used in the reduction of tumor size and burden, hence impacting subsequent treatment, surgical options, and long-term outcomes [ – ]. throughout the process of detection, diagnosis, management, and treatment of breast cancer, patients experience trauma and stress in physical, psychological, and emotional aspects. hence, it is important to understand the holistic needs of breast cancer patients to better provide supportive care throughout their journey. . holistic needs the well-being of a cancer patient is determined by how well her physical, social, psychological, emotional, and spiritual needs are being met. these needs are also mirrored in the maslow’s hierarchy of needs, a motivational theory in psychology [ ]. the figure below (figure ) is modified based on maslow’s original framework [ ] to suit the context of breast cancer patients, based on concerns raised by institute of medicine(us) ( ), schmid-büchi, s. et al. ( ), nccs breast cancer surivorship programme ( ) [ – ]. it is posited that the more basic needs in the lower tiers must be met before the higher needs can come into focus. however, in the context of cancer therapy, all aspects are assessed and managed concurrently as cancer patients often lose many components of their identity together. moreover, the distinction between different tiers is interlinked and not as disparate as it may seem. for instance, a strong family support may alleviate debilitating physical pain felt by the patients. the concept of cancer survivorship is a widely accepted and well-established notion defined by the national coalition for cancer survivorship, an organization set up by and for cancer survivors in the united states. it defines someone as a cancer survivor from the time of diagnosis to her demise, regardless of whether the cancer is cured, active, or untreatable [ ]. it seeks to change the patient’s healthcare , , of perspective from that of a passive victim to an active survivor. however, it is worth pointing out that, while this concept serves to create a sense of belonging among cancer patients, some patients may feel uncomfortable being labeled as survivors, especially as it forces them to focus on their disease as a centric theme in life. such sentiments are echoed by authors including diana fields in her autobiography [ ].healthcare , , of figure . maslow hierarchy of needs applied in the context of breast cancer, with reference from institute of medicine (us) ( ), schmid-büchi, s. et al. ( ), nccs breast cancer survivorship programme ( ). the concept of cancer survivorship is a widely accepted and well-established notion defined by the national coalition for cancer survivorship, an organization set up by and for cancer survivors in the united states. it defines someone as a cancer survivor from the time of diagnosis to her demise, regardless of whether the cancer is cured, active, or untreatable [ ]. it seeks to change the patient’s perspective from that of a passive victim to an active survivor. however, it is worth pointing out that, while this concept serves to create a sense of belonging among cancer patients, some patients may feel uncomfortable being labeled as survivors, especially as it forces them to focus on their disease as a centric theme in life. such sentiments are echoed by authors including diana fields in her autobiography [ ]. as each patient at different stages of breast cancer faces varying difficulties and is surrounded by her own unique circumstances, there is a need to individualize a holistic recovery package for every patient based on periodic holistic needs’ assessment. this is a set of recognized assessment tools that allows patients and their healthcare professionals to reflect on their needs and explore how best these could be achieved. it is hoped that patients will be able to better self-manage living beyond breast cancer [ ]. the national cancer action team in the united kingdom suggests a number of key stages (figure ) where a holistic assessment of needs should be conducted [ ]. these stages include, at the point of diagnosis; at the commencement of treatment; or at any time when the patient asks for it. these stages correspond to significant milestones along the patient’s journey where needs might change and support is needed. before and during the treatment, the cancer care team should explain to the patients and their families about their chances of recovery, treatment benefits and disadvantages, the availability of psychological services, social support and palliative care, and the estimated total costs [ ]. stressing the importance of effective communication in holistic cancer care, the australian national breast cancer centre has published guidelines on information provision and counseling for breast cancer patients and developed a national communication skills training strategy to train health professionals [ ]. over the past decade, many countries have come to recognize the importance of a multidisciplinary team (mdt) in cancer care. in fact, under the national health service in england, it is mandatory for the cancer care team to comprise designated breast surgeons, breast care nurses figure . maslow hierarchy of needs applied in the context of breast cancer, with reference from institute of medicine (us) ( ), schmid-büchi, s. et al. ( ), nccs breast cancer survivorship programme ( ). as each patient at different stages of breast cancer faces varying difficulties and is surrounded by her own unique circumstances, there is a need to individualize a holistic recovery package for every patient based on periodic holistic needs’ assessment. this is a set of recognized assessment tools that allows patients and their healthcare professionals to reflect on their needs and explore how best these could be achieved. it is hoped that patients will be able to better self-manage living beyond breast cancer [ ]. the national cancer action team in the united kingdom suggests a number of key stages where a holistic assessment of needs should be conducted [ ]. these stages include, at the point of diagnosis; at the commencement of treatment; or at any time when the patient asks for it. these stages correspond to significant milestones along the patient’s journey where needs might change and support is needed. before and during the treatment, the cancer care team should explain to the patients and their families about their chances of recovery, treatment benefits and disadvantages, the availability of psychological services, social support and palliative care, and the estimated total costs [ ]. stressing the importance of effective communication in holistic cancer care, the australian national breast cancer centre has published guidelines on information provision and counseling for breast cancer patients and developed a national communication skills training strategy to train health professionals [ ]. over the past decade, many countries have come to recognize the importance of a multidisciplinary team (mdt) in cancer care. in fact, under the national health service in england, it is mandatory for the cancer care team to comprise designated breast surgeons, breast care nurses (bcns), pathologists, radiologists, and oncologists [ ]. such a multidisciplinary approach has also been adopted by the swedish medical center [ ] and the japan cancer institute hospital’s breast healthcare , , of oncology center [ ]. the efficacy of the mdt is shown by the reduction in mortality in a region of scotland after the introduction of mdt [ ]. serving as a core member of mdt, a dedicated breast specialist nurse speaks to her patient before and after surgery. for instance, in singapore, breast care nurses are specially trained to attend to and care for breast cancer survivors, in addition to the surgical oncologist, providing both pre-operative counseling and post-operative rehabilitation [ ]. the institute of medicine (us) [ ] also recommends routine post-cancer treatment care for all survivors, in areas such as expected short-term and long-term effects of therapy, post-treatment monitoring for toxicity and recurrence, psychosocial and employment needs as well as preventive lifestyle modifications. a systematic review of studies by the institute of medicine (us) has shown that psychosocial interventions in breast cancer can improve quality of life and reduce symptoms of mental illness [ ]. adapting these recommendations into singapore’s context, the national cancer centre singapore (nccs) [ ] offered a multidisciplinary program that addressed patients’ post-treatment worries, including how complementarily medicines can be incorporated and whether local dishes such as chicken and rice can be consumed. those who went through the support sessions reported significant improvements in physical symptoms [ ]. . holistic needs at time of diagnosis for many people, the diagnosis of a malignant breast cancer induces a feeling of dread and fear. elisabeth kubler-ross [ ], a swiss-american psychiatrist, proposed five stages of grief that terminally-ill patients experience. regardless of whether the diagnosis is terminal or not, cancer patients may experience grief due to a sense of uncertainty and fear of the loss of future [ – ]. patients may also sense a loss of control over their lives as their normal routines are severely disrupted. for instance, a stringent treatment regime and the associated therapy side effects could render them unfit for work. patients need not necessarily go through the stages chronologically, but can fluctuate through the stages or revert back to any of the initial few stages during the treatment [ ]. we constructed table below based on elizabeth k. ross’ original framework on the five stages of grief, with references from cancer research uk, to elaborate on the unique challenges faced by breast cancer patients [ ]. table . the five stages of grief experienced by breast cancer patients. stages description denial the first reaction to a malignant diagnosis is to deny the reality [ ]. it is a temporary defense mechanism protecting one against the shock of a debilitating event [ ]. anger as an individual is eventually forced to face the truth, she starts to question why this is happening to her, and who is to blame [ ]. she experiences intense pain and helplessness that manifest as anger directed to those around them [ ]. during this stage, people around them may develop emotional resentments which could worsen their relationship. it is thus important for family and friends to empathize with the individual’s grieving phases. bargaining the individual focuses on what she or others could have done differently to prevent the cancer from occurring. she imagines how much better life could have been without cancer. she may also make a pact with god in the hope that life could go back to the times before the diagnosis [ ]. while such thoughts may help the individual to accept the diagnosis, it could lead to an intense sense of guilt. depression after accepting cancer as inevitable, the individual feels a sense of emptiness and profound sadness [ ]. she may see no meaning in doing anything. while many people seek to avoid settling into this state, it is important to recognize depression as a natural response to a great loss. one has to let herself face her emotions upfront and feel her grief fully before she can recover completely. this stage should not be rushed and different individuals may spend varying amounts of time in this stage [ ]. acceptance acceptance may follow depression, as the individual decides that she is ready to accept what has happened [ ]. she may not be completely alright with it, but she is willing to make adjustments and learn to live with it. healthcare , , of apart from facing difficulties in accepting the diagnosis, female breast cancer patients also grapple with self-esteem issues. after the surgery, many of these patients reported feeling less like women [ , ]. they may be concerned that the loss of a breast due to mastectomy or the loss of hair post-chemotherapy would diminish their femininity [ ]. therefore, prior to treatment, care providers play important roles to orientate the patient through the option of breast reconstruction and choose a method of breast reconstruction that suits them best. care providers should also explore with the patient on how they can help redefine her identity, perhaps by introducing her to other breast cancer survivors and exposing her to a new perspective. at this stage, cancer patients may feel most vulnerable and insecure as they are at a loss of what to do. in asian countries, where family plays an integral role in patients’ healthcare, the presence or absence of family support strongly influences patients’ outlook of their disease and their will to fight on. studies have found that there is a bidirectional effect between a cancer patient’s psychological well-being and her partner’s mental state [ ]. therefore, the healthcare team should ascertain the level of family support, enlist family members’ involvement in the care management, and create opportunities for the family to have meaningful conversations. when delivering the diagnosis, the doctor could sensitively break the diagnosis in phases depending on their patients’ emotional states, and take extra care not to create false hopes. the doctor could also explore goals of care, long-term planning, advance directives, and palliative care with his or her patients if indicated [ ]. . holistic needs during treatment . . managing physical side effects following tumor resection or mastectomy, many patients undergo chemotherapy to eliminate residual cancer cells. physical side effects of chemotherapy include anorexia, nausea and vomiting, oral ulcers, alopecia, risk of infection, and thrombophlebitis, particularly in patients requiring prolonged intravenous administration of drugs. on the other hand, radiotherapy commonly causes redness and dryness of skin [ ]. there are also other long-term complications related to radiotherapy. for example, axillary irradiation may predispose the patient to lymphedema of the arm. if the chest wall is irradiated in left-sided breast cancer, there is also a risk of cardiomyopathy. other side effects specific to breast cancer patients include osteoporosis, swelling, and immobility of arm and shoulder, thyroid dysfunction, early menopause-associated symptoms (e.g., hot flashes, sleep disturbance, mood changes, vaginal dryness), concerns about fertility, and decreased libido [ ]. some suggestions on how these side effects could be alleviated are provided below. . . . professional advice from cancer care team with a multitude of information available online and differing advice from well-intentioned family and friends, patients are often at a loss regarding which suggestions to follow. expert advice provided by the cancer care team on pain relief methods, skin care products, and recommended diets would serve to benefit them. this is validated by recent results from singapore’s breast cancer survivorship programme trial [ ], where patients reported large improvements in physical symptoms. the american society of clinical oncology breast cancer survivorship care guideline has also included the management of physical, psychological and social long-term side effects as one of the five critical areas to address in breast cancer survivorship [ ]. . . . exercises targeted exercise is an important part of physiotherapy and rehabilitation for breast cancer survivors. after surgery, patients need to engage in specific exercises to prevent shoulder and arm stiffness. if the surgery involves lymph node removal, the occupational therapist may prescribe exercises to reduce lymphedema as well as manual lymphatic drainage massage, skin care, and compression bandage [ ]. on the other hand, non-targeted exercises bring about better immunity, healthcare , , of enhanced body awareness, and psychological and physical well-being in breast cancer patients. exercises including yoga, weight lifting, and jogging have been shown to be effective in reducing anxiety, depression, fatigue, and stress in cancer patients [ , ]. . . . complementary medicine many people use complementary and alternative medicine (cam) while they are on conventional treatment. in singapore, due to its multicultural population, the wide array of cam encompasses traditional chinese, malay, and indian medicine, health supplements, acupuncture, yoga, and ayurvedic massage. a cross-sectional study revealed that the use of cam is highly prevalent among cancer patients in singapore [ ]. such practice has also been reported in china with the use of traditional chinese medicine (tcm) [ ]. an integrative approach between western treatment and cam could benefit patients in providing increased overall well-being during breast cancer treatment, by improving the side effects from conventional treatment and enhancing treatment outcomes. however, in order for these benefits to be delivered, it is important for trust to be established between the western doctor and the patient, so that the patient is forthcoming in telling her doctor what treatment she is receiving. this aids the western doctor to ascertain whether the cam would interfere with the conventional treatment, so as to prevent treatment delay and potentially dangerous drug–drug interactions between cam and chemotherapeutic or radiotherapeutic agents [ ]. . . managing psychological stresses in addition to suffering from debilitating physical side effects, having to take a long break from work brings up another issue of job and financial insecurity, as patients worry about the possibility of losing their jobs. this is complicated by the hefty cost of treatment that can go up to us$ , per annum [ ]. the added financial and emotional burden of caring for an ill family member may eventually lead to frustration, causing family relationships to deteriorate. psychologically, this also means that patients can suffer from a fear of abandonment or of being a burden. a sense of self-efficacy could be affected, as they are now dependent on others for not just financial support, but also physical help in getting around. this is compounded by losses such as hair loss during chemotherapy, mastectomy, and other physical changes during treatment, which have led many women to question their self-identity [ ]. therefore, other than linking up patients with relevant social services, an astute breast cancer nurse should also pick up signs of high stress state in patients, such as a change in behavior, as these could indicate a decline into clinical depression. a nurse counseling service can significantly help to reduce distress associated with breast cancer diagnosis and treatment [ ]. . . . social support an effective social support for cancer patients has been shown by numerous studies to be effective in reducing the negative impact of diagnosis and treatment and promoting psychological well-being [ , ]. the patient’s social support network includes family members, friends, neighbors, other breast cancer patients, and healthcare professionals. on the contrary, particularly in asia, where family plays a greater role in healthcare decisions, some patients may find it stressful and confusing when over-anxious family members interfere with every aspect of their daily life, including their diet and habits. to avoid such situations, the american society of clinical oncology recommends that caregivers have an open communication with the cancer patient and give assurance that he or she would be a central part of all discussions and decisions [ ]. they should also strive to involve the patient and maintain a sense of normalcy by helping her stay engaged with the world beyond cancer. healthcare , , of . . . spiritual care patients may find solace and assurance from the knowledge that a higher power exists. the motivational teachings involved in many different religions help to keep their hopes high, diverting attention away from themselves to the religious rituals or beliefs. moreover, religious groups can also offer community support and solidarity [ ]. for both religious and non-religious individuals, nurse-counseling service and voluntary organizations support can also help to reduce distress associated with breast cancer diagnosis and treatment [ , ]. . . . recreation patients are likely to be on long-term leave while recovering from treatment. some patients may inevitably feel a sense of emptiness following a sudden break from their hectic work. as such, recreation becomes an important means to “kill time” and preoccupy them. some forms of recreation include watching drama, going on excursions or trips, engaging in music therapy, pet therapy, or art therapy. randomized controlled trials conducted on cancer patients have shown that music and art therapy are effective in reducing emotional distress and enhancing psychological well-being [ , ]. . holistic needs after treatment following treatment, breast cancer patients may suffer from physical side effects such as lymphedema, post-mastectomy pain syndrome, and post-chemotherapy cognitive impairment [ ]. there may also be a persistent fear of cancer recurrence. it is hence imperative that doctors and patients work together to develop a personalized follow-up care plan for the coming months and years, so as to maintain good health, manage side effects, and monitor for cancer recurrence in both the native site and in other parts of the body. this could include scheduled doctor visits, mammograms, gynecological examinations, bone density exams, and others. in the management of breast cancer, the use of tools such as mammaprint and -oncotype dx could also assist in predicting the risk of recurrence and making treatment decisions. some of these tested genes are associated with proliferation (e.g., survivin and cyclin b and e ), invasion (e.g., matrix metalloproteinases (mmp ) and cathepsin l ), estrogen (e.g., er and pr), the human epidermal growth factor her /neu, and other hallmarks of cancers [ , ]. furthermore, if a patient has a hereditary breast cancer, the management may vary in genetic testing. in hereditary breast cancer patients with abnormal brca or brca gene mutations, other female relatives may also be at risk of developing not just breast cancer, but also ovarian and other cancers. other inheritable gene mutations such as tp in families with li-fraumeni syndrome, checkpoint kinase (chek ), ataxia-telangiectasia mutated (atm), e-cadherin (cdh ), serine/threonine kinase (stk ), partner and localizer of brca (palb ), and phosphatase and tensin homolog (pten), although rare, have been shown to increase the risk of early onset breast cancer [ , ]. these genes have been selected to be included in the panel of genes for genetic testing and some of these commercially available tests include breastnext and myriad myrisk [ ]. in addition, while males are not as susceptible as females for breast cancer, those with a positive family history have a greater chance of contracting breast cancer, compared to other males in the general population [ ]. therefore, the family members of breast cancer patients with susceptibility genes, both male and female, may need to be counseled with respect to the risks of developing cancers associated with relevant genetic mutations. besides genetic testing and counseling, psychosocial support may also be offered to such families. it should be noted that women with positive family histories of breast cancer tend to have a heightened sense of anxiety [ ]. appropriate genetic education and counseling would thus enable family members to fully appreciate the inherent uncertainty and implications behind genetic testing. patients may also worry about whether they can integrate back into the workplace and society after being on treatment for long periods of time. this is where support groups may prove to be beneficial. they may find solace in meeting people sharing similar situations as theirs and hearing healthcare , , of from those who have recovered psychologically from breast cancer. for example, singapore’s breast cancer foundation runs the bcf education and empowerment programme (beep) that engages not just survivors, but caregivers and medical personnel too [ ]. similarly, the japanese breast cancer patients' association, akebono-kai [ ], helps women with breast cancer return to a normal life after treatment. in addition to providing social support, the breast cancer care in the united kingdom [ ] also provides comprehensive information and education on coping with cancer. patients with advanced cancer may require long-term treatment while those with terminal cancer would require end-of-life care. the specific needs of these patient groups are not explored in this review. however, it must be noted that holistic needs care by the oncologist care team and the community is just as important, if not even more critical in determining quality of life for such patients. . conclusions unlike in the past, breast cancer is not necessarily a death sentence. the past two decades have seen major advances in new surgical techniques, radiation approaches, and drugs for breast cancer, making it a physical illness that can potentially be fully cured. with such advances, the focus today should perhaps be on healing the patient holistically, taking into consideration their psychological, social, and spiritual well-being, and sometimes even treating the family too. many hospitals are striving towards this goal by instituting a better holistic needs assessment and holistic care programs. hence, for breast cancer patients, the diagnosis may be initially overwhelming, but the journey and nursing back to health need not be a lonely one. acknowledgments: this work was funded by the national medical research council (nmrc) to celestial t. yap. author contributions: all authors contributed to the writing of the paper. conflicts of interest: the authors declare no conflicts of interest. references . torre, l.a.; siegel, r.l.; ward, e.m.; jemal, a. global cancer incidence and mortality rates and trends—an update. cancer j. clin. , , – . 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( ). activity calendars for older adults with dementia: what you see is not what you get. american journal of alzheimer’s disease and other dementias, ( ), - . doi: . / made available courtesy of sage publications (uk and us): http://aja.sagepub.com/ ***reprinted with permission. no further reproduction is authorized without written permission from sage publications. this version of the document is not the version of record. figures and/or pictures may be missing from this format of the document.*** abstract: this paper reports on a two-part study of nursing home recreation. in part one, a retrospective activity calendar and chart review was used in this comparative study of long-term care residents with dementia. data were collected and documented regarding demographics, cognitive and physical functioning, medications, activities listed on facility activity calendars, leisure preferences, and actual involvement in recreation over a two-week consecutive period during baseline. in part two, this information was compared to opportunities offered during a two-week clinical trial of recreational therapy. the results showed that, during baseline, almost percent of the subjects in the sample received little or no facility activities, percent received occasional activities, and percent received daily activities but they were deemed inappropriate based on the functioning levels or interests of the residents. the clinical trial period demonstrated that small group recreational therapy was successful in engaging residents percent of the time. key words: activity calendars, dementia, leisure preferences, recreational therapy, functioning article: the activity staff of the -bed special care unit prepared for a halloween visit from a local elementary school. the staff lined the residents up along the wall of the emptied dining room while a volunteer played the piano. from the center of the ceiling hung a huge parachute so stuffed with balloons that it touched the floor. when there was no more room along the wall, they formed an inner circle of residents, then a third row. the room became quite warm and many residents fell asleep, unable to see anything except the big yellow parachute. with barely any space to walk into the room, a staff member arrived with ice cream to hand out to all. on her heels squeezed in two volunteers with two large dogs for a pet social visit. a resident screamed as her fingers became pinched by another who was desperate to leave the room. no one heard her because at that moment, pre-k students with four chaperones started to file through in costume. the balloons were released. the children tried to get the balloons, while the residents—those few who were awake or not attempting to flee—tried to touch or catch a glimpse of the children. the dogs were after the ice cream, and the piano player performed a rousing march. within five minutes it was over as the children filed out, quickly disappearing down a hall, and staff started wheeling residents out. the harried-looking activity director turned to her aide and said, “it was hectic, but we can record all of them for music group, pet therapy, ice cream social, and intergenerational program!” actual event observed oct. , , by the research staff introduction activities structure our lives and, for many older adults, provide a source of satisfaction and meaning. research shows that activity patterns are highly individualized and based on our early leisure preferences, current abilities, and personality traits, and are stable throughout adulthood. with functional decline or placement in http://libres.uncg.edu/ir/uncg/clist.aspx?id= :% % http:/dx.doi.org/ . / :% % http:/dx.doi.org/ . / http://aja.sagepub.com/ long-term care, older individuals, especially those with dementia, experience more and more barriers to staying active and living a meaningful existence. activity calendars in nursing homes throughout the country, activities have been listed on mandated monthly calendars since the omnibus reconciliation act of (obra ‟ ), and activities providers have been doing their best to include as many clients as possible in these listed programs. it may be time to step back and evaluate if this is an appropriate or legitimate way to provide services to the residents with severe impairments. regulations for activity calendars vary from state to state, but most have similar basic requirements. the activity department is responsible for maintaining a monthly calendar of planned activities, which must be posted in a prominent place and should be legible and easily readable for all residents. the activity staff main- tains attendance records in activity calendar programs for many reasons, including:  residents‟ goals include attending a certain number of activities each month. for example, “mrs. brown will increase her socialization opportunities by attending two social events each month.”  if residents are not attending activity calendar events, this lack of activity might be triggered on the resident‟s minimum data set assessment.  family members like to see numbers, and at team conferences nursing home staff might say, “mrs. brown attended social events this month.” purpose this article will report on a study of older adults with dementia who reside in five florida long-term care facilities. the descriptive and comparative analysis examines activity calendar offerings in the facilities, leisure preferences of the subjects, and actual involvement over a two-week period. literature review obra ‟ states that long-term care recreational programs must meet not only the interests of clients, but also their physical, mental, and psychosocial needs. for older adults with dementia, this is challenging, as their ability to initiate or sustain meaningful activity is limited due to pathological changes associated with cognitive impairments . , nursing home residents with dementia are especially susceptible to boredom and functional decline unless special programs are provided to meet their needs and interests. , unfortunately, this is not routinely occurring as numerous studies have indicated that individuals with the most severe cognitive impairments are offered the least therapeutic options in long-term-care settings. - it is imperative to prevent boredom in these residents, as the consequence is often disturbing behavior. disturbing behaviors may be seen as either apathy or agitation, or both. agitation is defined as inappropriate verbal, vocal, or motor activities and occurs in up to percent of persons with dementia. , apathy is a lack of motivation that is not attributable to diminished level of consciousness, cognitive impairment, or emotional distress. apathy has several components: lack of initiation and perseverance, lack of emotional expression, and lack of goals. the apathy spectrum includes decreases in interest, motivation, spontaneity, affection, enthusiasm, and emotion. , even if a nursing unit has only a few residents with behavioral problems, these persons can cause pandemonium in the environment, distract caregivers, and increase distress among other residents. there is strong clinical evidence that individuals who are deprived of environmental stimuli or activity are at an increased risk for disturbing behaviors. - a study by cohen-mansfield revealed that even nursing home staff felt that boredom triggered agitated behavior percent of the time. buettner found that nursing home residents with dementia often sit for hours with little stimulation or activity within their reach. another study concluded that in a long-term-care setting, agitation was significantly higher in the evening and also when clients were occupied in the same pursuit for . hours or longer. the authors suggest a need for a balance between sensory stimulating and sensory calming activities to avoid agitation. behaviors such as wandering have been linked to boredom and lack of exercise, and screaming has been associated with poor social networks and social isolation. in addition to needing a balance of stimulating and calming programs, it was found that the programs should be matched to functional levels of the residents for best results. in fact, the lack of challenging recreational opportunities matched to the functional level of the resident significantly impacts both behaviors and the abilities of the resident with dementia. in a cross-over design study of nursing home residents with dementia, two types of programs were offered for four weeks each to all subjects: a general activity program with traditional new offerings and a recreational therapy program based on assessed needs and interests . this study demonstrated that appropriately planned, small group recreational therapy enhanced strength and flexibility and reduced problematic behaviors in only four weeks. a strong relationship was found between functional abilities and behaviors in this study, leading to the conclusion that the recreational therapist could impact functional abilities to improve behaviors. other studies have also found a correlation between impaired physical func- tioning and agitation. , it appears from the literature that certain disturbing behaviors are an attempt by residents with dementia to create their own stimulation due to boredom. despite elaborate activity calendars, skilled nursing facilities often do not provide adequate or appropriate programs to meet the needs of these individuals. ironically, it is these stimulation-seeking behaviors that often lead to removal of the individual from traditional facility programs, causing increased social isolation and long periods simply doing nothing. it is clear that older adults with dementia need specialized recreational programs to prevent social isolation, problem behaviors, and functional decline and to meet the minimum requirements of obra ‟ . all of these preventable problem areas are vital to quality of life and general well-being for the majority of nursing home residents. method research questions this research attempted the answer six questions: . what types of activities/recreation are currently being offered to nursing home residents who have dementia? . are programs offered at a time of day that would help prevent or reduce behavior problems? . are nursing home residents with dementia receiving functionally appropriate activities? . does usage of psychoactive medication impact activity participation? . does cognitive functioning impact activity participation? . does physical functioning impact activity participation? research study the data were extracted from a large research project called therapeutic recreation interventions (tris) for need- driven dementia-compromised behaviors in persons with dementia. the study tested the effects of specific tris for the treatment of the two major categories of disturbing behaviors of institutionalized elders with dementia. the interventions included individualized recreation therapy programs for calming agitated individuals and/or alerting passive individuals with cognitive impairments. the subjects were recruited from five residential settings; of these, completed the study. to determine the target behavior of the participants, data were gathered on what types of behavior the participant exhibited throughout the day. this was coded for eight time periods of two-hour blocks, starting at a.m. and ending at p.m. each time period was coded based on the predominant pattern of activity over a two- week baseline period, as determined by the primary caregiver. coding was as follows: = sleeping, either in bed or elsewhere; = passive, awake and not doing anything; = alert and engaged; and = agitated. the data were gathered by the unit nurse manager at each site who was provided with detailed instructions by a geriatric nurse practitioner researcher on how to code the various behaviors. participants were defined as having apathy only if they were coded for at least one time period with passivity and no time periods of agitation. participants were coded as having agitation only if they had at least one period of agitation and no time periods of passivity. participants were determined to have both behaviors if they had at least one time period of passivity and at least one time period of agitation. interventions were performed by the research team, which remained consistent throughout the project. the team included a phd-prepared gerontologist/ctrs, an advanced practice geriatric nurse practitioner with a certifi- cate in recreational therapy, and a gerontology/recreational therapy graduate student to assist. during the intervention periods, data were collected each time an intervention was attempted, for a total of , intervention attempts. the data were recorded from videotape and direct observation of the participants. variables included: time involved in minutes, engagement and type of encouragement needed, participation, and mood levels. the research sites included one nursing home without a special care unit, two nursing homes with special care units, one assisted living with a special care unit, and one assisted living with subjects from a special care unit and regular housing. sample to be included in the sample, individuals had to: be years of age or older; have a diagnosis of dementia in the medical record; have a mini-mental state examination (mmse) score of or less; have signed consent by guardian; be stable on current medications; and be identified by staff as having passive or agitated behaviors. a geriatric nurse practitioner researcher performed all mmses, gathered demographic data, and trained professional staff members on charting behavior times. the participants in this study consisted of . percent males (n = ) and . percent females (n = ) with a mean age of . years. dementia types included: unspecified, . percent; alzheimer‟s disease, . percent; mixed dementias, . percent; vascular dementia, . percent; and parkinson‟s dementia, . percent. the subjects‟ mean cognitive score was . (range - ), which indicated severe cognitive impairment as measured by the mmse. the subjects lived in several types of long-term-care environments. in this sample, . percent lived on special care units, . percent on assisted living special care units, . percent on general long-term-care units, and . percent on assisted living units. the research team stayed at each research site for two to three months, depending on the number of participants at the particular site. procedures in the tri study, each subject served as his or her own control, since interventions were to be individualized and biofeedback data is unique for each older subject. baseline data were collected for two weeks prior to the prescribed intervention. during that time, activity calendars were collected and subject participation in facility activities was recorded based on retrospective chart review, activity records, and direct observation. during the intervention period, each resident received individually prescribed therapeutic recreation three to five days a week for . hours per day for two weeks. this therapy was completed in small groups or as one-to-one sessions that were videotaped for behavioral coding. in the retrospective activity calendar and chart review, the researchers collected data on demographics, medica- tions, diagnoses, and current activity offerings. in addition, each subject was assessed using the global deterioration scale for functioning level and the farrington leisure inventory for leisure interests. this - item leisure checklist was used to determine the clients‟ past leisure and recreational interests. this tool was recommended by a panel of experts to be included in the american therapeutic recreation association dementia practice guidelines for treating disturbing behaviors. the leisure checklist was completed by interviewing both the resident and his or her family members. each subject was also assessed by a geriatric nurse practitioner for cognitive functioning, physical functioning, depression, agitation, and passivity. these assessments involved interviews with family members, staff, and subjects and observation of the subjects‟ behavior throughout the day. these data were used as the basis for examining the activities offered on the facility calendars and determining what the subjects actually participated in during the baseline collection period. frequencies and chi-square tests were used to describe and compare the information for this article. to answer research question one regarding the types of activities offered in nursing homes, activity calendars were collected at each research site. from the activity calendars, a simple count was made of the number of times different activities were offered during a one-month period. a compilation of recreational outlets available was described by site. this information examined the type of unit, space available for recreation, recreational items available by free choice to the residents, attendance in activity calendar events, weekend recreation, and the most common times that programs were offered. space availability was determined by interview with the activity department staff and from direct observation. items in the environment were determined by facility policy and by direct observation. program attendance was deter- mined by direct count from the activity department records. types of activities, weekend activities and activity times were determined by a simple count from the activity calendars during a one-month period. to answer question three on the appropriateness of activities, the number of times subjects fully participated in activities posted on the calendars at each site was gathered by direct observation of facility activities. this was recorded during baseline periods to avoid conflicts during the intervention phase of the research, so the sub- ject‟s participation did not prevent involvement in a favorite facility activity. for a subject to be counted as involved in an appropriate activity, he or she had to be actively engaged in the calendar activity and aware that he or she was in the program. residents were not counted if sleeping or if the individual just happened to be the room. if an activity lasted five minutes or less, it was considered a quick one-to-one “hello” visit, not a recre- ational activity. any activity that did not include activity staff leadership, such as watching television, was not counted. activities that were family- or friend-initiated, such as going to a restaurant or out for a walk, were not counted unless the family participated in a scheduled, facility organized activity. staff providing ice cream or smoothies (ice cream social) was considered a nourishment pass, not an activity. music being played over the loudspeaker system was not counted as an activity. activities considered inappropriate were ones such as reading the newspaper as a part of current events to a very large group. if the residents in the back rows were unable to hear what was being said or see the leader, the activity was not counted. programs were considered inappropriate if they consisted of the resident watching the staff member do the activity. an example was cook- ing groups, in which the residents watched the staff prepare an item. cooking programs can be easily modified for all levels of functioning and were counted only for the residents actively engaged in some way. other inap- propriate participation noted was a resident in a room during a pet visit when the resident had an obvious dislike and fear of animals. it is important to note that all of the descriptions above were documented by the activity staff for programming records. research results as shown in table , the environments in this sample had very little space available for recreational programs. if a facility had space available, it was used for storage or as a space for nursing staff to complete charting. the environments were not conducive to freely selecting recreational items to interact with. most items that were available in the environments were not appropriate or appealing to the residents. most programs ended by : p.m. on weekdays, and few opportunities were available on weekends. the analysis of the activity calendars collected at the research sites produced a list of the types of activities (question one) offered in nursing homes. table lists the most frequent activities and how often they were offered each month for each site. leisure preferences vs. activity calendar offerings table shows the top past and current leisure preferences for the subjects in the study based on the farrington leisure inventory. the types of recreation listed are limited to those that were mentioned by more than percent of the subjects. cooking was mentioned by percent of the subjects, yet only one site offered this activity to its residents. cooking groups have been used in recreational therapy programs to help clients follow simple directions, socialize with each other, and plan and prepare snacks and meals . , , , , chores were listed as the top activity calendar offering in two of the sites (table ). a study examining the use of therapeutic kitchens in long-term-care settings found that residents are more likely to participate in recreational cooking groups than in household chore types of activities, such as setting tables. downloaded from behavior problems vs. programming times to determine if activity programs were offered at the time of day that would help prevent disturbing behaviors (question two), caregivers recorded behavior activity times. time of day of the behaviors was recorded by the nursing staff and is presented in figure . behavior was coded as: sleeping; passive (sitting doing nothing); alert and engaged (meaning calm and physically or mentally engaged in an activity, which could be activities of daily living); or agitated. passive behaviors peaked in late morning ( : a.m. - noon) and then again in the late afternoon ( : p.m. - : p.m.). agitated behaviors gradually increased throughout the day, with a peak between : and : p.m.. interestingly, this was the time period when the least number of calendar activities was offered. most facilities finished programs by : p.m., except for one that offered one program three times per week from : - : p.m. it appears that calendar activities were not planned with any regard to time of behaviors or resident need for stimulation. functional appropriateness of activities in regard to question three, the data showed that almost percent of the subjects in the sample received little or no activities. another percent received occasional activities, and percent received daily activities but they were deemed inappropriate based on the functioning levels or interests of the residents. data revealed that percent received appropriate activities two to three times per month and only . percent received appropriate activities three times per week. when examining this for specific unit type, the subjects who resided on the special care unit fared the worst, with percent having little or no activity participation; per- cent, occasional inappropriate activities; percent, daily inappropriate activities; percent, occasional appropriate activities; and less than percent, frequent appropriate activities. from this information, it was con- cluded that the residents were not receiving appropriate levels of mental, physical, or psychosocial activities in any of the facilities, yet health department surveys did not indicate any problems. these results are similar to a prospective study in , which found that after one year of admission to a nursing home, percent of resi- dents were not participating in any activities. impact of psychotropic medications research question four concerned the impact of psychotropic medications on activity participation (table ). psychotropic medication usage for the subjects included . percent receiving none, . percent receiving one, and . percent receiving two or more. in a chi-square analysis of psychotropic medication usage and activity participation (table ), it was determined that there were significantly more residents than expected who were on psychoactive medications and inactive. examining the relationship between facility participation and psychotropic medication usage found the highest percentage of subjects receiving no or few activities were the ones receiving two or more psychotropic medications. the highest percentage of subjects receiving frequent appropriate activities was those on no psychotropic medications. impact of cognitive functioning research question five concerned the impact of cognitive status on activity participation (table ). examining activity participation and cognitive status, it was found that percent of the subjects with a mmse score of nine or less received little or no activity. of the subjects with an mmse score of zero, percent received little or no activities. the nine subjects who received frequent appropriate activities had a mean mmse score of . , which is seven points above the mean for this study. in a chi-square analysis of mmse score and activity score (table ), it was determined that many more subjects than expected with low cognitive functioning received little or no activity. impact of physical functioning research question six examined the impact of physical functioning and activity participation (table ). of the subjects in the study, nine subjects received frequent appropriate activities. of those nine, eight were self- ambulatory and one self-propelled in a wheelchair. for this sample, those with high physical functioning received the most activities. results of the chi-square analysis for physical functioning and activity participation are shown in table . preferred activities during the two-week consecutive intervention period completed by the researchers, data were collected on all , interventions attempted. the interventions were individualized based on function, need, and past leisure interests. variables included time involved in minutes, engagement, type of encouragement needed, participa- tion, and mood levels. these were recorded from direct observation of the interventionists. engagement was determined based on the percentage of time during the intervention that the subject was interested in and focused on the activity. the mean time in minutes spent engaged in the research interventions was minutes, with an overall engagement level of percent. results for encouragement required were: normal, . percent; some, . percent; much, . percent; and refuse, . percent. results for participation were: active, . per- cent (n = ); passive, . percent (n = ); and refused, . percent (n = ). mood data were: enjoyed, . percent; indifferent, . percent; did not enjoy, . percent; suspicious, . percent; frustrated, . percent; and weepy, . percent. restlessness and/or agitation occurred during . percent of the interventions. table shows the top interventions based on engagement percentages, and table shows the top interventions based on time involved. drama therapy was a cognitive and expressive arts program that consisted of subjects selecting a play or skit, practicing, making props and flyers, and performing the production for others. wine and cheese social was a cooking group, which consisted of planning, shopping, inviting others, preparing the food for the social, and cleaning up. the social part of this program consisted of reminiscing about past foods, travel, and other topics. the airmat is a -foot by -foot sensory airflow mattress that is inches tall and attached to a continuously pumping air compressor. it was used for relaxation and exercise and to provide sensory stimulation. each program tested can be found in detail in the american therapeutic recreation association dementia practice guidelines for treating for disturbing behaviors. discussion the description of the subject‟s recreational interests and actual activity calendar participation was not originally part of this study. the data was so rich and the findings were so disconcerting that these researchers decided to bring the information forward before the larger study even ended. the current survey practice of simply checking the availability of the activity calendar and the number of activities participated in may not be an accurate gauge of the obra ‟ requirements for the physical, social, and emotional needs of the residents with dementia. the number of calendar activities participated in does not appear to be a meaningful outcome for the majority of these individuals. while we realize this small sample in one area of the country limits the impact, in this study of long-term- care residents with dementia, individuals were, for the most part, left out of traditional long-term-care calendar activities and offered few options that matched their interests. the activities programs offered were often inappropriate for the functioning levels of the residents. the few residents who attend appropriate programs seem to be repeatedly attending all programs and were usually self-mobile. those on multiple medications, with the most functional impairments, were the least likely to get any meaningful recreational activity on a regular basis. unfortunately, this left residents with cognitive impairments with little stimulation, few opportunities for socialization, and little meaning in their lives. most residents with dementia in this study were able to express their recreational interests when asked, or the information was otherwise attainable through interviews with family. with the interview data in hand, it was possible to prescribe engaging recreational opportunities that reached residents of all ability levels. positive outcomes were measurable when using the therapeutic recreation process. these researchers also realize that in the current healthcare environment, long-term-care facilities must deal with many serious problems. activities and recreation for the residents with dementia are often low priorities for the administrators, staff, and even health department surveyors. without meaningful activities and therapeutic recreation for the most frail and disabled individuals, life often lacks purpose, friendships, and opportunities for challenge and excitement. this may also lead to isolation, depression, and an unnecessary loss of cognitive and physical functioning. this article compared what is listed on the long-term- care facility‟s calendar for residents with dementia to the activities they prefer and the number of calendar activities they actually participated in. less than seven percent of this sample received appropriate levels of activities or recreation. the findings are startling and unsettling, as it appears long-term-care facilities are providing very few meaningful or relevant recreational outlets for frail older adults with dementia. in a national survey by the national citizens‟ coalition for nursing home reform, residents stated they wanted more activities than currently offered and that the activities should reflect personal preferences and represent their diverse interests and capabilities. a top priority was taking part in community activities offered within the nursing home and outside in the community. residents also discussed the need for activities in the evenings and on weekends and the importance of offering all residents choices. american association of retired persons (aarp) recently pointed out that the center for medicare and medicaid services (cms) quality indicators have a glaring omission, that of meaningful recreational activities. it appears that, despite this information, recreation remains a serious quality of life problem years after the original survey. so the question remains: why aren‟t long-term-care facilities providing the types of recreational programs to meet residents‟ needs? many may not have a recreational therapist to meet the full range of needs, or they may not be using the recreational therapist to service hard-to-reach residents. perhaps education and training is missing and regulatory oversight has not focused on this area. we do know from our study that the activity calendars are hung each month with care, but for residents with dementia, the benefits are not often there! acknowledgment this study was funded by the alzheimer‟s association, investigator initiated grant - . references . kolanowski a, buettner l, costa p: capturing interests: therapeutic recreation activities for persons with dementia. ther recreation j. ; ( ): - . . acthley rc: social forces and aging: an introduction to social gerontology, th edition. belmont, ca: wadsworth thomas learning, . . obra „ : omnibus reconciliation act of . department of health and human services: health care financing administration. rules and regulations. federal register: ; ( ): 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bulletin brief. may, . the view from all fours: a look at an animal-assisted activity program from the animals’ perspective alison hatch department of sociology, university of colorado-boulder, usa abstract in recent decades, animal-assisted therapy (aat) and animal- assisted activity (aaa) programs have gained in popularity. a growing literature documents the benefits of aat/aaa for humans. the prevalent perspective for aat/aaa research is “what can non-human animals do for us?” with no apparent consideration to what such programs may do for, or to, the animals involved. ample research reveals that animals are minded actors with the ca- pacity to feel complex emotions. consequently, aat/aaa programs should benefit the animals as well as the humans involved. based on interviews with human volunteers in an animal shelter’s aaa program and participant obser- vation in the same program, this paper investigates the animals’ experience in aaa. specifically, this study discusses the use of shelter animals as “vol- unteer therapists” and concludes that aat/aaa programs raise numerous concerns for the animals involved. these findings indicate the need for more attention to the experience of animals in aat/aaa programs. keywords: animal-assisted activities, animal-assisted therapy, animal welfare, shelter animals there is a long history of human reliance upon non-human animals for therapeutic benefits. while perhaps existing in varying degrees since the domestication of dogs and cats, the systematic use of an- imals for therapeutic purposes dates back to at least the early middle ages (cantanzaro a). contemporarily, animal-assisted therapy (aat) and animal- assisted activities (aaa), of various types and with differing goals, exist in pris- ons, juvenile homes, hospices, retirement homes, treatment centers, homeless shelters, schools, and hospitals. “animal-assisted therapy” (aat) programs technically refer to programs with a stated goal of therapy, for example, a stroke patient brushes a dog or a child with cerebral palsy rides a horse in order to help improve motor skills. in such cases, health or human service professionals use animals as part of their job. “animal-assisted activities” (aaa) often refer to pro- grams where animals simply “visit” with a population (i.e., the elderly) with no stated “therapeutic” goals per se (besides that of companionship). in aat and ❖ address for correspondence: alison hatch, university of colorado- boulder, department of sociology, ucb, ketchum, boulder, co usa e-mail: alison.hatch@colorado.edu anthrozoÖs volume , issue reprints available photocopying © isaz pp – directly from permitted printed in the uk the publishers by licensing only a n th ro zo ö s anthrozoo?s ( ).qxp:layout / / : pm page the view from all fours a n th ro zo ö s aaa programs, animals visit or work with hearing- and sight-impaired children and adults, and those with varying mental, psychological, and physical disabilities. aat/aaa programs take a variety of forms, but usually fall within four major categories, based on the role of the animal. some specially trained animals live with an individual on a full-time basis; other animals are temporary companions, visiting facilities alongside human volunteers; others are “mascot” animals, residing most of the time in therapeutic settings; and others are considered “part of the living environment,” an approach that is seen in some residential centers or working farms (cantanzaro b). a range of animals, in ad- dition to dogs, are used in aat/aaa programs, including cats, rabbits, mice, gerbils, ferrets, horses, dolphins, birds, pot bellied pigs, farm animals (i.e., llamas, goats, cows), and monkeys. existing aat/aaa research accompanying, and perhaps in part fueling, the relative abundance of aat/aaa programs is a growing literature attesting to the benefits such programs have for humans. veterinarians, psy- chologists, and other pet-therapy enthusiasts have gathered testimonials and witnessed first hand the effectiveness of aat/aaa programs for humans (see, for example, graham ; becker ; crawford and pomerinke ). such accounts argue that animals can help humans in a variety of ways, including but not limited to helping patients recover in hospitals, providing support and com- panionship for those facing emotional difficulties, encouraging the physically disabled to perform tasks that strengthen speech and motor skills, encouraging children to read, calming alzheimer’s or other distressed patients, and raising the spirits of the terminally ill. many academic and medical studies attest to the benefits of interacting with companion ani- mals; one review of literature between and found journal articles focusing on the benefits of interacting with companion animals, including human–animal interaction found in aat/aaa programs (barker et al. ). interacting with animals (“companion” and otherwise) is said to have a range of physical effects such as lowering blood pressure (beck and katcher ); aid- ing in the development of motor skills like coordination, balance and posture (mccowan ); a variety of psychosocial effects like decreasing feelings of loneliness, despair, isolation and fear (muschel ), and decreasing symptoms of depression (jessen, cardiello and baun ). an- imals act as “facilitators” (see messent ) of human social interaction, increasing the levels of communication among residents, staff, and the human aat/aaa volunteers (granger and carter ; bernstein, friedmann and malaspina ). additionally, the use of various animal programs in correctional facilities has resulted in decreased incidents of aggression and problem behaviors, decreased levels of depression, and has positively impacted inmate self-esteem (haynes ; moneymaker and strimple ; walsh and mertin ; strimple ). not all studies of aat/aaa yield positive results. some research points to potential problems or negative effects of aat programs for human recipients. for example, the benefits of pet visitation pro- grams may depend on the personality type of those being visited (colby and sherman ). other studies indicate animal visits or pet ownership has no effect on elderly residents and there is evidence of aat/aaa causing decreased morale and health in some populations (lago, knight and connell ; ory and goldberg ; miller and lago ; stallones et al. ). wilson and barker ( ) point to the potential problems in the methodology of existing research that claims therapeutic effec- tiveness in human–animal interactions. additionally, beck and katcher ( ) find little evidence that companion animals provide long-term therapeutic benefits for human health and well-being. with so much research done on aat/aaa programs, what is missing is a thorough discussion of the effects programs of this nature have on the animal “volunteers” themselves. the prevalent per- spective on aat/aaa is “what can animals do for us?” with little or no consideration to what the pro- gram may be doing for, or to, the animals. any focus on the animals has largely been limited to what the animals need in order to succeed in aat/aaa. for example, animals should be bathed, spayed/neutered, current on vaccinations, housebroken, obedient, and have a calm temperament. some work on aat/aaa mentions the possible problems animals may cause for humans, for anthrozoo?s ( ).qxp:layout / / : pm page example, the potential for the transmission of zoonoses (walter-toews ), resident allergies (beck ), concern about fleas (brickel ), fear of or dislike of animals (fine b), negative conse- quences associated with the death or illness of an animal on the human (fine b), and physical injuries (i.e., scratches and bites) (arkow b). however, very few researchers have focused on the possible ill effects aat/aaa programs have on the animals themselves. iannuzzi and rowan ( ) provide a notable exception with their study of the ethical issues raised by aat/aaa. they point to the following concerns for the animals: limited access to water, high temperatures in nursing homes, high expectations for the length of time animals should visit, and the overall stress such work can cre- ate for animals. serpell, coppinger and fine ( ) point to the high potential for inhumane or inap- propriate training methods used on therapy or service animals. they also argue that many therapy and service animals are placed in positions in which they cannot avoid or escape unpleasant social intrusions that may have an adverse effect on their physical and mental well-being. crutches, walk- ers and wheelchairs also pose a risk to any animal who may be “underfoot,” and therefore care needs to be given to keep animals safe from accidents and aggressive client behavior (granger and kogan ). with the potential for so many problems, it appears necessary for researchers to con- sider the effects, both positive and negative, of aat/aaa for the animals involved. some animal rights activists argue that keeping animals as companions, let alone using them as aides in human therapy, is a form of animal exploitation. such a position would likely find the use of animals (as property) to aid in human well-being problematic. whether one agrees with this argument or not, at the very least it seems reasonable to expect that those involved in aat/aaa programs should be (or would want to be) concerned about animal welfare and the humane treat- ment of therapy animals. thus, it would be fruitful to research the potential physical harm animals can suffer from participating in aat/aaa programs (i.e., dehydration and fatigue). furthermore, recent sociological work affirms that animals are minded actors with distinct selves and the abil- ity to feel and display a range of emotions (arluke and sanders ; alger and alger , , ; sanders ; irvine ). these findings raise concerns about the potential emotional and mental harm to the animals involved in aat/aaa (i.e., stress, fear and discomfort) and whether the animals enjoy participating. ideally, aat/aaa programs should benefit the animals as well as the humans involved. research objectives and methods my interest in this research came from my experience volunteering in an aaa program affiliated with a humane society that i will refer to as “the shelter.” the shelter’s program sponsors animal visi- tation through a variety of local institutions, including nursing homes, hospices, retirement homes, and juvenile homes. the stated goals of the shelter’s pet-therapy program are to “provide ther- apy and to promote the human/animal bond” and to “provide a ‘feel good’ service to the commu- nity in which our animals get exercise and exposure while benefiting participating institutions.” to reach these goals, volunteers can bring either animals from the shelter or their own companion an- imals to their assigned location. the human volunteers attend a two-hour training session sponsored by the shelter, and the companion animals must pass a temperament and obedience test to par- ticipate in the program. in contrast, shelter animals do not have to pass a specific temperament test (other than the behavioral evaluation that deems them “adoptable”) or have any specific training. the shelter considers those who bring shelter animals as partaking in a “pet therapy” program and those who bring companion animals as part of an “animal-assisted therapy” program. the differ- ence in labels indicates that companion animals have passed an evaluation and can enter more “high risk” locations. however, both “animal-assisted therapy” and “pet therapy” are technically mis- nomers because the dogs and cats in either category are used for visitation. once a week, i would bring a shelter animal (usually a dog) to a nursing and retirement home. after doing this a few times, i wondered what this experience was like for the animals themselves. further research indicated that not only are there relatively few discussions of animal welfare hatch a n th ro zo ö s anthrozoo?s ( ).qxp:layout / / : pm page the view from all fours a n th ro zo ö s concerns in existing aat/aaa research, but that the use of shelter animals (rather than companion animals) in aat/aaa is fairly rare, or at least rarely discussed. my research objective was to get a sense of what the animals experience while participating in an aaa program. this paper draws on interviews with ten human volunteers who, along with shelter animals (in- stead of their own companion animals), participated in the shelter’s aaa program. additionally, i in- clude my own experiences as an aaa volunteer that i gathered over the expanse of about a year. the nine women and one man i interviewed were all white and middle-class. the youngest re- spondents (ages and ) participated in the program with their mothers (the mothers chose not to be interviewed), two of the respondents were college aged, and the remaining respondents ranged in ages from to years. the semi-structured interviews (see appendix for interview schedule) took anywhere from one hour to three hours to complete and were completed in mutu- ally convenient locations away from the shelter. volunteers typically chose dogs for their visits, but occasionally brought cats or rabbits. most vol- unteers visited elderly populations (in nursing homes, hospices, alzheimer’s units, assisted and in- dependent senior living, and low-income housing). most visited their location(s) every other week, spending about to minutes on site. the number of people seen in one visit ranged from one to , with most volunteers visiting about ten to twenty. the majority of respondents had one to two years of experience in the program. it is important to recognize the potential problems inherent in interviewing the volunteers in this program. on one hand, the volunteers are likely to have interest in the dogs, in addition to having first hand experience in witnessing the behavior and response of the dogs while “on location.” on the other hand, these very factors might make the respondents over interpret or misconstrue what dogs do, feel, and think. additionally, the respondents vary in their knowledge of reading and in- terpreting dog behavior. measuring animal response because we lack a shared language, assessing an animal’s “true” feelings can pose a difficult, but not impossible, task. although a dog cannot vocalize her discontent or glee in terms humans can understand, her body language sends fairly clear and comprehensible messages (sanders ; bekoff ). animals speak in body postures; for example, a dog who raises her hackles is likely displaying fear, and a cat who twitches her tail is likely displaying irritation. through experience and perhaps intuition, many humans can grasp the meaning of some common dog and cat postures. for example, many interpret the wagging tail of a dog or the purring of a cat as indicators of hap- piness, and for the most part those are correct interpretations. fewer people understand the more subtle body posturing that animals display. for instance, a dog’s wagging tail may mean different things depending on the speed of the wag, and whether the full tail or just the tip is wagging. dogs also use a range of what the shelter and renowned dog trainer turid rugaas refers to as “calming signals” that they use to diffuse stressful situations. for example, a dog may lick her nose, sniff the ground, yawn, turn away, or stare in response to a stressful situation (rugaas ). familiarity with the likely meanings behind animal postures and behavior allows humans to understand and com- municate with them. the volunteers in the shelter’s aaa program all received handouts and a cursory explanation of dog and cat body postures. i asked the volunteers to discuss the responses they saw animals exhibit during aaa. the meaning behind calming signals was not emphasized much in the training, and thus respondents had a range of familiarity with calming signals (some very familiar, some not familiar at all). despite this range of knowledge, respondents’ intuition and experience with cats and dogs did allow them to feel fairly confident in their assessment of the animals’ reactions. in other words, while some people may not have been familiar with dog calming signals per se, they felt they could still speak to the dogs’ experience (based on their interpretation or “sense” of the animals’ re- action). thus, respondents engaged in a fairly common practice that arluke and sanders ( ) refer anthrozoo?s ( ).qxp:layout / / : pm page to as “speaking for” the animals’ subjectivity. faced with a lack of shared language, humans often feel compelled to “give voice” to what they believe to be the point of view or thoughts of the dog or cat. in this respect, the volunteers felt they could interpret, and speak for, what the dogs experienced and desired. any attempt to describe what animals are feeling in the absence of “hard” evidence is likely to be charged with anthropomorphism. in the sense that one uses human language to describe the feelings and emotions of animals, one is certainly anthropomorphic. this, however, is the conse- quence of using human language; we cannot avoid anthropomorphizing (irvine ). in the at- tempt to understand if a dog feels upset or happy, fearful or relaxed, i am not arguing for sentimental projections. instead, i argue for the use of a critical anthropomorphism that grounds statements in what is known about the animal, either as individuals or representatives of the species (see shapiro , ; burghardt ; bekoff ). results selecting candidates the volunteers who use shelter animals for aaa are responsible for picking out an appropriate an- imal at the shelter. shelter animals do not undergo specific aaa temperament or obedience tests; thus, most adoptable animals are candidates. to find a suitable candidate, volunteers must use their best judgment. they observe the animals’ behavior. some ask shelter staff for recommenda- tions, and additionally, they read the paperwork attached to each dog and cat kennel, which out- lines what is known about the animal. the paperwork includes medical notes, the results of the shelter’s behavioral evaluations, and as many details about the animal as possible (including a ques- tionnaire filled out by the previous guardian, if the animal was relinquished instead of stray). very few volunteers choose cats or rabbits for aaa; clearly, dogs were the more popular choice, perhaps due to the volunteers’ familiarity with dogs or because they believed dogs made the best “volunteer therapists.” respondents also considered the age of the animal; they considered older animals bet- ter aaa candidates because of their typically more “mellow” dispositions. other sought-after char- acteristics varied. one respondent mentioned that she specifically looks for food-motivated dogs and waits until she feels the right “energy” from the animal. a mother/daughter duo looks for smaller dogs because they are easier to handle. one volunteer avoids dogs who are “yippy.” yet another looks for cats who like to sit on laps. in other words, there is no established understanding of what makes a “good” shelter aaa candidate. sometimes volunteers made successful guesses and the animal worked well for aaa, and sometimes volunteers found their decisions to be way off the mark. brian explains the difficulty in selecting the right shelter dog for aaa: it is so hard to tell, the dog wants out to begin with and it almost seems like you are being conned, ‘i’m the sweetest little dog in the world, please let me out, please please please please please,’ and as soon as you….put the leash on (and) you open the door and they are running all of the place and you call the dog’s name and they never respond…i think that you just never can tell, you do the best you can. in the end, choosing the “best” animal for aaa is a combination of basing one’s decision on as much information as one can gather about the animal and also a bit of sheer luck. even if a dog or cat seemed “calm enough” at the shelter, their behavior could change in the car or at the resi- dence. consequently there is a bit of a gamble involved. many times the human volunteers began to get a sense of the temperament and energy level of the dog or cat immediately after leaving the shelter. not all shelter animals have had much pre- vious experience, or much positive experience, with automobiles. therefore, getting in to the car or carrier and riding in the car is a troublesome experience for some, but not all, of the visiting animals. dogs and cats can and do associate certain experiences (like riding in the car), or certain people (like the vet), with negative or positive reactions and feelings. moreover, if a handler finds that the hatch a n th ro zo ö s anthrozoo?s ( ).qxp:layout / / : pm page the view from all fours a n th ro zo ö s animal, especially a dog, is afraid of the car it actually provides a good opportunity to engage in some training. by using positive reinforcement, and perhaps treats, the volunteer can coax the dog into the car, and thus begin to help the dog overcome their fear. many volunteers used such reinforce- ment to get dogs into the car, but few had the time, patience, or knowledge to engage in much train- ing. some volunteers mentioned picking the fearful dog up and placing him or her in the backseat. from the standpoint of using aaa as a way to also socialize shelter animals, this method may not be helpful in the long run. the visitation site the behavior and reaction of dogs and cats at the residences or treatment centers varied widely, depending on the animal. while few volunteers brought cats, those who had experience bringing them seemed to indicate that many, if not most, cats found the experience, or aspects of the ex- perience, especially stressful. for example, cats who had little positive experience with carriers often yowled while riding in them, and many cats also seem to find new locations nerve-racking. for the most part, respondents who did bring cats tried to find calm, lap-loving cats. gloria tried to find more active cats because they seemed more willing to leave their cage. as she explains, “we had to try to find ones that you could tell wanted to play because some didn’t and we would try to get them out (of their cage) and they wouldn’t want to.” occasionally, volunteers chose a cat who worked well for aaa, who would spend time on a client’s lap, or play with a toy and not indicate fearfulness. other times, it did not go as well. for example, i once brought a cat to a nursing home. she yowled dur- ing the entire trip there and instantaneously produced a covering of dandruff. she immediately tried to hide when i let her out at the nursing home. clearly, this cat did not enjoy any part of the experi- ence. it is possible that this sort of reaction is somewhat expected in cats, and thus most volun- teers brought dogs instead. respondents who brought dogs to various institutions indicated that most of them were at least curious with their new surroundings and engaged in a lot of sniffing and “investigating.” some dogs solicited attention. others had trepidation of wheelchairs and walkers. some dogs lay down; others roamed. a few respondents recognized calming signals in some of the dogs, like yawning and pant- ing. all in all, while gloria summed up the reactions of the shelter dogs as all “really excited (and) re- ally hyper,” the responses the dogs had to the environment, and the people in it, seem to range widely. most of the volunteers had an implicit understanding of what they thought made a “good” visitation dog. the “best” aaa dogs were those who were “well-mannered,” who did not jump on people or pull on their leash, and who were interested in the residents and solicited their attention. in explaining what a “good” aaa dog displays, jenny said that, “they just went right up to people...that’s what makes it fun, when the dog kind of does all the work, and you don’t have to drag the dog just to go into a room or something.” thus, for a dog to be especially “good” in relation to aaa, the dog must be a relatively well-behaved and willing participant. the “good” dogs usually made the experience go more smoothly for all involved, they made the handling easier for the human volunteer, some of the dogs seemed to enjoy the attention, and often clients responded better to the “well mannered” dogs. not all dogs displayed praiseworthy behavior during aaa. other dogs either were simply less “well mannered” and/or they found the experience frightening or stressful. while samantha said that most of the dogs were “good” and that most loved the people they were visiting, some dogs had a different reaction: there were a couple of dogs that were there that i took, fortunately few and far be- tween, that didn’t want to be there at all, (they) were so distracted. they didn’t want to even be touched, they wanted to go to the door, they wanted to lay down, they wanted to eat, they wanted to do anything but not be around the people. some respondents mentioned having to cut the visitation short because of a specific animal’s behavior. while respondents did not seem to do this often, some skipped doing their usual visit anthrozoo?s ( ).qxp:layout / / : pm page hatch a n th ro zo ö s if the dog seemed anxious, hot, or distracted. claudia once made such a decision after get- ting the dog into her car but before arriving at the nursing home. while driving, she decided that the dog was too stressed for visitation. she turned the car around and brought the dog back to the shelter. sometimes a dog’s behavior or reaction was questionable at best, but it did not necessarily provoke the respondents to feel the need to bring the dog back immediately. for example, clau- dia brought a dog who ended up exceedingly frightened of elevators, and another who was fright- ened of stairs. i once brought a dog who was terrified of the nursing home’s sliding glass doors. both samantha and olivia had experiences of dogs getting free from their leashes and running away (fortunately, both were subsequently caught). dogs also sometimes panted (which is indicative of heat, thirst, and/or stress), pulled toward the door to leave, paced, sniffed the ground obsessively (indicative of curiosity and/or stress), and acted disinterested or distracted. however, many dogs also wagged their tails, “checked in” with their handlers, solicited attention, and were otherwise well-mannered and “good” aaa dogs. additionally, there were no reported incidences of dogs snapping or biting any client or handler. the behaviors and responses of the dogs varied, and some- times a dog who enjoyed part of the experience (i.e., the car) did not necessarily enjoy others (i.e., being around wheelchairs). instead, the dogs’ responses illustrate that not all dogs have the ap- propriate temperament or training for such programs. the “antsy” or “anxious” aaa dog may, in a different situation, make for a very calm and “well-mannered” dog. to be sure, fear behaviors open an opportunity for the handler to engage in some training and positive socialization. however, re- spondents often lacked the time and skills to do so. dogs may also react in a certain way because their behavioral signs are misinterpreted by the handlers. for example, early in the interview, jenny comments that sometimes dogs are anxious and have difficulty focusing. later in the interview she explains that, “we don’t give them water or anything during the visit in case, you know, we don’t want them to have an accident in the hall.” given that dehydrated dogs are likely to display anxiety, offering these anxious dogs water may have helped calm them. claudia mentioned that she sometimes thinks the dog she brings can pick up on her stress, if she is stressed a particular day, and consequently the dogs also feel stressed or anxious themselves. thus, the human handlers can and do play a large role in the dog’s experience. resident reactions as discussed earlier, ample research indicates that animal visitation programs have positive effects on the residents of various institutions. this is not to say, however, that everyone enjoys a visit by an animal. mostly, the reactions are positive; people typically enjoy petting the animals, reminiscing about pets they had over their lifetime, and using the animals as a catalyst for conversations with the human volunteer. however, sometimes the reactions toward the animals are not positive, and could even be dangerous. for instance, claudia recalled when a staff member jumped in front of a dog to scare it (and it worked!). perhaps the most troubling of all experiences is the one brian had with a small dog: i had a dog in my arms, and i brought it closer to this one person who i thought seemed to want to see the dog, and that person just swatted the dog in the nose! and the dog just reeled back a little, looked at me, looked at the person, looked at me like “what the hell?” obviously, the experience of being hit by a human is not good for any dog, but arguably it is even more problematic for a shelter dog. first, the dog may have responded aggressively (thankfully it did not), and second, that kind of experience may harm the dog’s chances of ultimately being adopted. a dog who could possibly have a history of experiencing animal abuse, or who fears hu- mans in general, clearly is done a further disservice by situations such as these. anthrozoo?s ( ).qxp:layout / / : pm page respondent reactions when asked directly, respondents had more difficulty listing specific drawbacks of the program for shelter animals than they did listing benefits. however, through the course of the interviews, many would bring up examples of things that would seem to be drawbacks for the animal—like evidence of stress or fear —and yet not mention those same things when asked directly to list potential costs. this may indicate that respondents do not find fear or stress in the animal necessarily problematic, that they believe such instances of stress or fear are too few to mention, or that they feel the need to “defend” the program (or at least not speak negatively about it). additionally, it is difficult to think of the animals’ behaviors and reactions retrospectively. if a volunteer was not aware of the mean- ing behind certain calming signals, he or she is unlikely to have paid much attention to them if they were indeed displayed. thus, for example, when people remember dogs sniffing the ground, they may have interpreted this behavior simply as “exploring.” the sniffing certainly may have indicated exploring and curiosity, it may also have been a calming signal employed by a nervous dog. con- sequently, not being familiar with behavioral cues makes interpreting the animals’ reactions difficult. discussion in the early s, phil arkow from the humane society of the pikes peak region in colorado pi- oneered the involvement of shelter animals in aaa programs. his “pet-mobile” program brought shelter kittens and puppies to nursing homes. a “small but influential” number of humane societies across the nation followed suit by organizing their own aaa programs using shelter animals (arkow b). however, within the course of about two decades, the use of shelter animals (puppies/kit- tens and adults alike) in aaa programs became more controversial. fredrickson and howie ( ) and hines ( ) argue that by the s, all major humane associations and veterinary organiza- tions in the united states recommended against using shelter animals in aaa programs. the hu- mane society of the united states began to question the use of shelter animals for aaa for a variety of reasons, including for example, that aaa programs take time and resources away from shelter’s larger missions (i.e., preventing animal cruelty and adopting out homeless animals); the programs keep animals out of the shelter when they may have otherwise been adopted; the animals return to the shelter often exhausted from the visits; and there is often very little information known about the past behavior and health history of the animal (beck ). currently, while many shelters na- tionwide continue to sponsor aaa programs, it is unknown how many of these programs use shel- ter animals as opposed to volunteers’ companion animals. the use of shelter animals today either has become relatively rare, or has received no attention in the literature. it is easy to see why there are mixed feelings about the use of shelter animals in aaa programs. on the one hand, aaa provides shelter animals the potential benefits of socialization and exercise. additionally, the shelter benefits from increased positive exposure in the community. on the other hand, numerous problems can arise in aaa, some of which may have a negative impact on the an- imal and his or her chances of adoption. the relative lack of information about the animals’ pasts is the most pressing concern. with no knowledge of a dog’s behavioral history, one does not know if they are afraid of wheelchairs or elevators. thus, forcing a dog or cat into a situation that may cause them considerable fear not only harms the animal, but may also put other people in danger if the animal responds to fear with aggression. thus, bringing animals into institutions for aaa, whether they are companion or shelter animals, raises concerns about liability. companion animals can re- ceive specialized aaa testing, training, and certification, and therefore they become much less risky, legally speaking, than a shelter animal with no specialized training or certification. it seems understood that any client or handler who severely abuses a therapy or visitation ani- mal will not only mentally and/or physically harm the animal and destroy the animals’ ability to help others, but also threaten the animal’s chances of being adopted. the case of the resident who hit the visiting dog is a prime example of such straightforward animal cruelty. an animal who learns to fear humans is simply not as likely to be adopted. although research indicates visiting with animals the view from all fours a n th ro zo ö s anthrozoo?s ( ).qxp:layout / / : pm page hatch a n th ro zo ö s is a positive experience for institutionalized populations, not all people like or will respond appro- priately to animal visits. keeping the welfare of animals in mind, there is indeed reason to be cau- tious about the people who are visited. handlers should avoid people who can and do express their dislike for animals, and animals may be in harm’s way if they are exposed to people who can- not voice their dislike or fear. furthermore, certain populations may be inappropriate for animal vis- itation, or at the very least, warrant extra caution. for example, one of the respondents worked with a “troubled” teenager who, at age ten, had killed a dog after the dog bit him. the goal of aaa for him was to learn to like and trust animals. the program’s objective for this teen is obviously a worthy one, but situations like these call for extraordinary vigilance on the part of the handler and perhaps the presence of a mental health professional. perhaps not as obvious as outright abuse is the risk posed to animals in aaa (or aat) inadver- tently. for example, if an animal who fears wheelchairs and walkers is pulled toward them (instead of learning to be comfortable with them) the handler could create anxiety in the animal and thereby reinforce the fear. another example, seen several times in this study, is the handlers’ failure to pro- vide the dogs water due to concerns about the dog urinating in the facility. while not intentionally ma- licious, the handlers are in effect dehydrating the dogs and creating an unhealthy experience for them. the handlers’ lack of knowledge about calming signals and other stress reactions could re- sult in their failure to read, or their misreading of, the behavioral cues the animals display. in aaa, the potential for handler mistreatment, mishandling, and ignorance exists, regardless of how well inten- tioned the human may be. without proper knowledge about animal behavior, handlers may not know when to take an animal from a situation. without proper knowledge, handlers may reinforce fear or stress reactions, which could consequently make the dog or cat more difficult to adopt and/or could increase the chances of the animal’s eventual euthanasia. additionally, the experience of stress can have detrimental effects on animals’ health and well-being. stress can suppress reproductive func- tions, impair immune functions, and have other ill effects (carlstead and shepherdson ). many respondents in this study argued, consistent with aat/aaa literature, that shelter ani- mals benefit from participating in aaa because they have increased exposure to people. not only do animals in the shelter receive little human interaction, but many come from situations in which they had little or no positive interaction. thus, as many of the respondents to this study mentioned, aaa may allow for a socialization opportunity. many respondents also point to the benefit of pro- viding the shelter animal with an opportunity to stretch his or her legs, to get out of the shelter, and have a change of scenery. while exercise is important for an animal’s well-being, the need for a “change of scenery” may not be imperative and may actually be stressful. there are, however, ample benefits gleaned by shelter animals in situations involving positive human interaction. shel- ter animals can learn to trust and like humans, in addition to being exposed to new and interesting environments. despite these potential benefits, it seems important to weigh the potential costs (i.e., fear and stress) and benefits (i.e., socialization). aaa programs that use shelter animals can rely on research to make the program safer and more successful for the animals involved. for example, hennessy et al. ( ) found higher levels of plasma cortisol concentration, which could indicate stress, in dogs during the first three days in a shelter. therefore, it seems advisable to choose an animal for aaa after their initial three days at the shelter, thereby not adding more strain to the initial high stress period. gasci et al. ( ) found that dogs in shelters have a “remarkable need for social contact with humans, which can lead to a relatively rapid formation of attachment to a potential attachment figure.” even three short handling encounters be- tween a shelter dog and a human may evoke attachment behavior in the dog. aaa handlers could theoretically reduce the dog’s overall stress if they have some history, even if brief, of interaction. one of the most important aspects to implement in an aaa program that uses shelter animals is a thorough and comprehensive education for, and perhaps screening of, the human volunteers. the handlers must know how to recognize and respond to the signs of stress, discomfort, and fear. animals who are noticeably nervous about any aspect of the aaa experience (including meeting anthrozoo?s ( ).qxp:layout / / : pm page with residents, driving in the car, riding on elevators, etc.) should be removed from the situation. in cases of stress or fear, the handler should use appropriate methods of relaxing the animal and know when, and how, to use the situation for positive reinforcement training. it does, however, seem fool- hardy to expect that a handler will be able to train an animal not to exhibit fear or stress in just one visitation excursion. additionally, handlers must recognize, and respond to, any health need that the animal may express (like the need for water or rest). therapy programs that use shelter animals would benefit from implementing a tempera- ment/behavioral test (or series of tests) for the aaa candidates. each animal responds to environ- mentally induced stress differently, because responses to stress vary based on the individual histories of the animal (wolfle ). thus, it makes sense to test each animal individually instead of making assumptions based on age or breed. while there are problems with the reliability of such tests, they provide a better indication of the animal’s potential reaction to stress than does an “educated” guess based on limited paperwork and kennel behavior. in fact, one temperament test alone may not be sufficient. as dunbar ( ) astutely argues, “a temperament test only reflects the relative good and bad qualities of individual animals on the day that they were tested.” thus, a series of temperament tests would fare better as an appropriate indicator. additionally, it is important to know whether the animal in question responds well to commands so that the handler can comfortably control the an- imal during aaa. shelter dogs run the gambit in their knowledge of obedience. when a handler embarks on aaa with a shelter dog in tow, it is largely unclear when and if the animal will understand and obey commands. the inability for dogs to understand certain commands is inconvenient, but it can also be dangerous for the animal and humans involved. for example, if the dog accidentally gets off the leash and does not understand the command to “come” (as happened to some re- spondents in this study), the dog is in serious danger of harming herself. accordingly, the lack of re- lationship between a dog (or cat) and a human handler poses risks. with no shared history or mutual understanding between them, neither knows what to expect of the other. the very lack of a rela- tionship or bond between handler and dog could result in a stressful or anxious experience for the animal (and perhaps the human, as well). clearly, running such tests on shelter animals would strain a shelter’s already limited resources. if such testing is not possible, or if thorough training of the human handlers is likewise not affordable, the program may not be worth the risk. conclusion this study is not without its limitations. asking human volunteers to describe and observe animal be- havior opens up of the possibility of subjectivity and bias. however, the study is firmly situated in a growing body of sociological literature that seeks to investigate and understand the ways in which humans interpret animal behavior (arluke and sanders ; alger and alger , , ; sanders ; irvine ). additionally, this paper makes a significant contribution to existing re- search on aaa by examining the role of the animals in such programs. this research indicates that aaa programs provide benefits (i.e., potential for increased socialization) and pose risks (i.e., poten- tial for client mistreatment) for the shelter animals involved. the lack of knowledge of shelter animal temperament and obedience also poses some risks. additionally, the lack of relationship and history between the animal and the handler may result in the inability of the handler to read the animal’s be- havioral cues. and, having no experience with visiting the facilities and lacking a shared history with the handlers, the animals may feel stressed, fearful or anxious. while there is a possibility that the aaa experience for shelter animals can increase their socialization skills and provide an opportunity to work on “good” behavior, there is also the chance that the experience could reinforce negative or fear- ful behavior that could hurt their chances of being successfully adopted. overall, shelter animals may not benefit from their participation in aaa to the same extent that is possible for companion animals to benefit. weighing the potential positives against the potential negatives, arguably the concern about the use of shelter animals for aaa is justified. future research into all animals’ experiences in aat/aaa programs is essential for animal welfare and the future of aat/aaa programs. the view from all fours a n th ro zo ö s anthrozoo?s ( ).qxp:layout / / : pm page acknowledgements i am extremely grateful to leslie irvine for providing me with insightful feedback, support and encouragement. notes . for the sake of simplicity, i will henceforth refer to non-human animals as “animals” and human animals as “humans.” . in addition to “animal-assisted therapy” and “animal-assisted activities” the following terms are also some- times used: “animal-facilitated activity,” “animal-facilitated therapy,” “pet-facilitated therapy,” “pet-facilitated activity,” “pet therapy,” “pets as therapy,” and “pet visitation.” while some of the phrases refer to basically the same thing, other terms are indicative of differing program goals. see the delta society’s website (www.deltasociety.org) for additional information about the differences between aat and aaa programs. . for additional discussions of various studies describing the health benefits aat/aaa programs and inter- acting with companion animals have for humans, see arkow ( a, ) and fine ( a). . similarly, very few studies have considered the human volunteers that accompany the pets. some excep- tions to this include savishinksy ( , ) and granger and carter ( ). . this particular program is for the most part referred to as “pet therapy” by the shelter. this use of this label is a bit misleading, as it is mostly a visitation program with the hopes of having therapeutic effects. the an- imals are not used to aid in reaching specific therapeutic goals with the help of health professionals. . this paper is part of a larger research project in which i compared the experience of shelter animals with the experience of companion animals in the shelter’s visitation program. . specifically, dogs undergo the nationally recognized “canine good citizen test,” with a couple of additional evaluation exercises added on by the shelter. cats undergo a temperament test developed by the shel- ter. the shelter has not evaluated any other animal besides dogs and one cat for this aaa program. . my gratitude to an anonymous reviewer for bringing this point to my attention. . stress is a loaded word, and there does not seem to be one agreed-upon definition between animal be- haviorists (broom and johnson ). stress includes both mental and physical strain. though it is not the purpose of this paper, it is possible to measure the physiological components of stress on animals (i.e., changes in heart rate, adrenal or hormonal responses). odendaal and meintjes ( ) used physiological measures to determine the effectiveness of aat. perhaps more studies on aat/aaa could incorporate physiological measures in the future. . “calming signals” may have some similarity to “cutoff behavior” displayed by wolves (fox ). a wolf who displays passive submission to an aggressor may effectively cutoff an attack. likewise, a dog who engages in calming signals may be attempting to stop or diffuse a certain stressful situation. . i realize i am touching on a contentious issue here, as many animal behaviorists do believe it is possible to describe animal behavior without being anthropomorphic. the debate whether anthropomorphism is un- avoidable and potentially beneficial (bekoff ) or something that should be resisted, however difficult, (i.e., kennedy ) does not fall within the scope of this particular study. . i have changed all names to protect confidentiality. . see irvine ( ) for further discussion on an animal’s capacity for memory and continuity (self-history). . i came across at least one study that referenced the use of shelter animals (see bernstein, friedmann and malaspina ). . see carlstead and shepherdson ( ) for a more thorough discussion of stress and animals. references alger, j. and alger, s. . beyond mead: symbolic interaction between humans and felines. society & ani- mals ( ): – . alger, j. and alger, s. . cat culture, human culture: an ethnographic study of a cat shelter. society & ani- mals ( ): – . alger, j. and alger, s. . cat culture: the social world of a cat shelter. philadelphia, pa: temple university press. arkow, p. ed. a. the loving bond: companion animals in the helping professions. saratoga, ca: r & e publishers, inc. arkow, p. b. the shelter’s role in the bond. in the loving bond: companion animals in the helping pro- fessions, – , ed. p. arkow. saratoga, ca: r & e publishers, inc. hatch a n th 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[aid= ] the view from all fours a n th ro zo ö s appendix . the interview schedule. . how long have you been an aaa volunteer at the shelter? . have you volunteered in an aaa program elsewhere, and if so, for how long? . what location(s) do you bring animals to? what type of establishment is it? . how often do you visit the establishment? how long do you stay each visit? . explain the atmosphere and protocol for the establishment(s) you visit. for example, do you bring the animal room to room or is there one main visiting room? . do you bring shelter animals or your own companion animals? . what animals from the shelter have you brought with you on aaa trips? do you have a primary species you have experience or preference bringing? why? . are you familiar with calming signals? explain what you know about calming signals. . explain your process of picking out the animal at the shelter. are there certain characteristics you are looking for? . describe what you have seen the animals display when you pick them out at the shelter and prepare them for the car trip. . describe what you have seen the animals display when you take them in the car to drive to your visitation location. . describe what you have seen the animals display while they are at the visitation location. how do they approach and react to residents? how do they react to you? . describe what you have seen the animals display while you take them out of the residence and drive them back to the shelter. . describe what you have seen the animals display when you return them to their holding pens at the shelter. . do you feel as though the animals form any type of bond with you, the volunteer? do they “check in” with you or otherwise attempt to please you? . do you feel as though the animals form any type of bond or connect with the residents? . what are some potential benefits of the visitation experience to the animals themselves? . what are some potential costs of the visitation experience to the animals themselves? . overall, in your opinion, do you think the animals enjoy the visitation experience? why or why not? . to whom do you believe the benefits of the program are strongest – the resident, the animal, or the human volunteer? why? . are there benefits or costs to bringing an animal from home along for visitation instead of a shelter animal? are there benefits or costs to bringing an animal from the shelter along for visitation instead of a companion animal? . please describe any memorable experiences you have had in the program. anthrozoo?s ( ).qxp:layout / / : pm page the buffer effect of therapy dog exposure on stress reactivity in undergraduate students international journal of environmental research and public health article the buffer effect of therapy dog exposure on stress reactivity in undergraduate students alexandra j. fiocco * and anastasia m. hunse department of psychology, institute for stress and wellbeing research, ryerson university, victoria street, toronto, on m b k , canada; anastasia.hunse@gmail.com * correspondence: afiocco@psych.ryerson.ca; tel.: + - - - (ext. ) received: may ; accepted: june ; published: june abstract: stress is an insidious health risk that is commonly reported among university students. while research suggests that dog exposure may facilitate recovery from a stress response, little is known about the buffer effect of dog exposure on the stress response to a future stressor. this study examined whether interaction with a therapy dog could reduce the strength of the physiological stress response when exposed to a subsequent stressor. sixty-one university students were randomly assigned to either a therapy dog (td, n = ) or a no-dog control (c, n = ) group. the stress response was measured by electrodermal activity (eda) in response to the paced auditory serial addition test (pasat). participants also completed questionnaires that assessed pet attitude, general stress levels, and affect. analyses of covariance (ancovas) showed that increase in eda was significantly more pronounced in the c group than in the td group (p < . ). pet attitudes did not modulate the buffer effect of therapy dog exposure. results suggest that therapy dog exposure may buffer the stress response in university students, which has implications for the promotion of a viable stress management program on university campuses. keywords: stress; therapy dog; intervention; human-animal interaction . introduction stress is an insidious pathophysiological mechanism that underlies a number of health-related disorders, both physical and psychological in nature [ , ]. both affective and physiological stress is particularly pervasive in undergraduate students and has been linked to a number of negative health outcomes [ , ]. further, it has been shown that students are commonly unknowledgeable of viable stress reduction options available to them on or off of campus [ ]. the negative effect of stress on physical and psychological health outcomes in university and college students has been well documented. the transition into university can be associated with a number of perceived stressors, including: multiple examinations, concerns about grades, financial difficulty, and interpersonal or relationship stressors [ ]. heightened levels of stress are pervasive in the undergraduate student population and have been linked to the development of overall physical illness [ ], depression [ , ], and anxiety [ ]. increased blood pressure has also been found to correlate with stress in the undergraduate population, both of which significantly increase during times of academic study [ , ]. int. j. environ. res. public health , , ; doi: . /ijerph www.mdpi.com/journal/ijerph http://www.mdpi.com/journal/ijerph http://www.mdpi.com http://dx.doi.org/ . /ijerph http://www.mdpi.com/journal/ijerph int. j. environ. res. public health , , of in a survey that gathered information from , students at universities, the american college health association (acha) found that % of students had not received information about stress reduction from their university, while % were interested in receiving information on stress reduction. the same survey reported that % of students rated their stress as above average and % indicated that they were under tremendous stress [ ]. in the acha fall survey, completed by , students, when questioned which factors had a negative impact on their academic performance, . % of students reported general stress, . % reported anxiety, . % reported depression and . % reported sleep difficulties [ ]. further, . % of students reported feeling exhausted, . % felt overwhelmed by anxiety, . % felt lonely, . % reported feeling that things were hopeless, and . % seriously considered suicide [ ]. there has also been a notable rise in stress-related health ailments between and ; including a % increase in anxiety, % increase in depression, and a % increase in suicide attempts [ ]. together, these reports highlight the need for an effective, timely, and accessible source of stress relief for students on campus. one such source may exist in the therapy dog programs that have been increasing in popularity on university campuses. a plethora of research suggests that pet ownership is significantly associated with wellbeing in western, european, and eastern countries (for review, see [ ]). research shows that animal assisted therapy produces a number of benefits in clinical populations, including improved focus and awareness in children with pervasive development disorders [ ], increased language use in children with autism [ ], decreased stress physiology within a social context in children with autism [ ], increased social interactions in patients with dementia [ ], and decreased depression in institutionalized patients [ ]. one hour of interaction with a therapy dog has been shown to decrease self-report ratings of depression, anxiety, and pain in patients admitted to a mental health hospital [ ]. further, a study that examined residents of a nursing home found that weekly -minute interactions with a therapy dog led to an improvement in mood [ , ]. in non-patient populations, exposure to a therapy dog is associated with an increase in sense of well-being and pleasure [ ], and is also found to be associated with greater decreases in endocrine and cardiovascular reactivity following stress exposure [ ]. a study conducted by odendaal and meintjes [ ] found that as little as five minutes of interaction with a therapy dog lowered cortisol levels and blood pressure compared to pre-test levels in healthy adults. additionally, a study conducted by barker et al. [ ] demonstrated that a five-minute interaction with a therapy dog lowered serum and salivary cortisol levels in healthcare professionals compared with baseline levels. presence of a therapy dog may further reduce cardiovascular arousal while engaged in a stressful situation [ , ]. while previous research suggests that dog exposure may facilitate recovery from a stress response, few studies have explored whether prior interaction with a therapy dog before stress exposure can act as a buffer to subsequent stress responsivity. allen et al. [ ], examined the effect of a human versus animal companion on stress reactivity in response to an arithmetic challenge in female dog owners, aged to years of age, who were self-described as “lovers of dogs”. women were tested in their home and were randomly assigned to one of three conditions: a no companion condition, a human companion condition, and a pet companion condition. results showed that women assigned to the pet companion condition displayed lower stress reactivity, as measured by the galvanic stress response (i.e., electrodermal activity, eda) and systolic blood pressure, compared with the human companion and no companion condition [ ]. this study suggests that the presence of a pet during stress exposure serves as a buffer to the stress response. although research suggests that presence of a pet may reduce stress physiology during stress exposure [ – ], these studies have focused on participants who are pet owners, using the participants’ personal pet in the protocol. in these study designs, participants underwent a mental stress induction protocol in the comfort of their home while their pet roamed freely. there is a paucity of research that has examined the effect of brief therapy dog exposure on subsequent stress responsivity to a stress induction protocol during which the therapy dog is not present. this research question is important in the context of university and college students who may not have access to a personal pet, but may have brief access through programs such as a int. j. environ. res. public health , , of therapy dog program. indeed there is a growing interest among students for the use of therapy dogs as a method of stress reduction [ ]. to this end, the present study aimed to determine whether interaction with a therapy dog impacts the physiological stress response in the face of a subsequent stressor, and whether attitude towards pets might moderate this effect. based on previous literature, it was hypothesized that interaction with a therapy dog would be associated with lower levels of physiological stress reactivity, as measured by eda. it was further predicted that the buffer effect would be enhanced by high self-report positive pet attitudes. . materials and methods . . participants sixty-one university students, with a mean age of . (sd = . , range – ) were randomized to either the therapy dog (td) group (n = ) or the control group (n = ). there were male participants and female participants. exclusion criteria for the study included fear and/or allergies to dogs. participants were invited to the institute for stress and wellbeing research where they signed an informed consent form before undergoing the study protocol. participants were naïve to the true purpose of the study, and were fully debriefed at study completion. this study was carried out following the rules of the declaration of helsinki of . this study was granted ethics approval by the ryerson university research ethics board ( - ). . . procedure participants were randomized to either a therapy dog (td) or no-dog control (c) group, using a blocked design randomizing software called research randomizer [ ]. participants were unaware of which group they had been assigned to prior to their appointment, and were informed upon enrollment that group assignment was random. each participant was tested in a private testing room. once consent had been collected, participants’ finger-tips were fitted with a biopac galvanic skin response amplifier. following a five-minute baseline rest period, participants in both groups completed questionnaires that gathered information about demographics, perceived stress, and pet attitudes. participants in the c group were then told to relax in a seated position for min. participants in the td dog were asked to remain seated while a therapy dog was brought to sit beside them. td group participants were informed that they could interact with the therapy dog in a seated position for min, after which time the therapy dog would be removed from the room. after this -min experimental period (i.e., no dog vs. dog) participants were asked to complete an affect questionnaire. upon completion, participants were given instructions about how to complete the paced auditory serial attention task (pasat). upon completion of the pasat, participants were asked to fill out a second affect questionnaire before being detached from the biopac system and undergoing the debriefing process. see figure for a flowchart of the procedure. int. j. environ. res. public health , , of int. j. environ. res. public health  ,  ,       of      figure  . flowchart of the study procedure. pas: pet attitude scale; panas: positive and negative  affect scale; pasat: paced auditory serial attention task; pss: perceived stress scale.  . . measures  . . . stress induction  paced auditory serial addition task (pasat) [ ]. the pasat is a computerized audio task that  assesses attentional processing, immediate memory, and attention [ ]. it has been also been shown  to reliably induce a stress response [ ]. in order to induce participants’ perceived threat to ego and  increase  their  stress  response,  participants  were  told  that  their  performance  was  going  to  be  monitored  by  the  researcher  and  was  being  compared  with  other  students.  completion  of  the  pasat included listening to a standardized audio recording of single digits being presented every    s, with the participant expected to add each digit to the one immediately prior to it and input it at  increasing speed. the pasat took approximately   min to complete.  . . . stress buffer  st. john ambulance therapy program (toronto, on, canada). the present study used ten therapy  dogs recruited from the st. john ambulance organization. dogs ranged in age and size. breed of dog  included an irish setter, schnoodle, miniature poodles, greyhound, king charles spaniel, golden  retrievers, and australian cattle dog. all dogs were certified by the organization, and as such had  certified good health, hygiene, and had been trained to interact with people in a docile manner.  participants in the td group interacted with the therapy dog for ten min before stress induction.  . . . physiological stress measures  figure . flowchart of the study procedure. pas: pet attitude scale; panas: positive and negative affect scale; pasat: paced auditory serial attention task; pss: perceived stress scale. . . measures . . . stress induction paced auditory serial addition task (pasat) [ ]. the pasat is a computerized audio task that assesses attentional processing, immediate memory, and attention [ ]. it has been also been shown to reliably induce a stress response [ ]. in order to induce participants’ perceived threat to ego and increase their stress response, participants were told that their performance was going to be monitored by the researcher and was being compared with other students. completion of the pasat included listening to a standardized audio recording of single digits being presented every s, with the participant expected to add each digit to the one immediately prior to it and input it at increasing speed. the pasat took approximately min to complete. . . . stress buffer st. john ambulance therapy program (toronto, on, canada). the present study used ten therapy dogs recruited from the st. john ambulance organization. dogs ranged in age and size. breed of dog included an irish setter, schnoodle, miniature poodles, greyhound, king charles spaniel, golden retrievers, and australian cattle dog. all dogs were certified by the organization, and as such had certified good health, hygiene, and had been trained to interact with people in a docile manner. participants in the td group interacted with the therapy dog for ten min before stress induction. int. j. environ. res. public health , , of . . . physiological stress measures galvanic skin response. to monitor the physiological stress response, participants’ electrodermal (eda) activity was measured throughout the entire testing process by a trained researcher using the biopac eda c (biopac systems canada inc., montreal, pq, canada). the eda c measures skin conductance levels as they increase when an individual is under stress, and is an efficient and effective means of measuring stress reactivity [ ]. . . . questionnaires general perceived stress [ ]. the perceived stress scale (pss) is a measure that determines the degree to which an individual perceives their life as stressful in the past month. the pss contains items on a -point scale with the following response options: never, almost never, sometimes, fairly often, and very often. the pss has been shown to have excellent reliability and validity [ , ]. higher scores on the pss indicate greater perceived stress. positive and negative affect [ ]. the positive and negative affect schedule (panas) is a measure that uses a -point scale, from “not at all” to “extremely”, to determine the range of feelings for different emotions, including positive (e.g., interested, excited, enthusiastic) and negative emotion (e.g., irritable, distressed, nervous). the panas measures an individual’s emotions in the moment and is a way to determine change in affect after a stimulus is administered [ ], clark, & tellegen, ). it has been shown to possess cross-sample stability, internal reliability, temporal stability, cross-cultural invariance, and convergent and criterion-related validity [ ]. in the current study, the panas measured self-reported affect before intervention, after intervention, and following stress exposure. the scale provides a total score for positive affect (pa) and negative affect (na), with higher scores indicating higher endorsement of the emotion. pet attitudes [ ]. the pet attitude scale (pas) measures participant’s attitudes towards pets. it is most commonly used to evaluate the interaction between testing results and people’s pre-existing attitudes towards pets. the pas contains items on a -point scale with response options including strongly disagree, disagree, slightly disagree, unsure, slightly agree, agree, and strongly agree. higher score on the pas indicates more positive attitude towards pets. the pas is a viable choice to explore the relationship between participants’ physiological responses to the stressor and their pre-existing attitude towards pets, and has been shown to have high reliability [ ]. . . statistical analyses data were assessed for assumptions of normality and outliers. one-way analyses of variance (anova) and chi-square analyses were conducted to assess for between-group differences at baseline. baseline factors that significantly differed between groups (p < . ) were controlled for in subsequent analyses. to address the study hypotheses, eda and positive and negative affect levels were converted into change scores by subtracting the mean levels at baseline from the mean levels during the stressor. one-way anovas were conducted on the change scores, controlling for covariates and baseline physiology scores. to assess the moderating role of pet attitude, a median split was conducted to create high and low categories for pet attitude. interaction terms were then entered into the model (i.e., group × pet attitude). subgroup analysis was then conducted within the td group to assess for moderation of pet attitude on therapy do buffer effect. all analyses were conducted using spss statistics (ibm corp., north castle, ny, usa) and results were considered significant at p < . . . results . . participant characteristics recruitment for this study was conducted from january–february . overall, participants had a mean age of . years (range = – ). analyses of variance and chi-square analyses showed int. j. environ. res. public health , , of that groups did not significantly differ on any of the baseline variables. table summarizes detailed sample characteristics and baseline measures. table . baseline characteristics of participants. characteristic therapy dog (n = ) control (n = ) p-value mean (sd) or n (%) mean (sd) or n (%) age, years . ( . ) . ( . ) . female, n (%) ( . %) ( . %) . ethnicity, n (%) . black/african american ( . %) ( . %) white/caucasian ( . %) ( . %) other ( . %) ( . %) pas . ( . ) . ( . ) . pss ( . ) . ( . ) . panas positive . ( . ) ( . ) . negative . ( . ) . ( . ) . pas: pet attitude schedule; pss: perceived stress scale; panas: positive and negative affect schedule; eda: electrodermal activity. . . effect of therapy dog exposure on affective reactivity controlling for baseline affect, ancova did not reveal a significant group effect on change in positive affect, f( , ) = . , p = . . although not statistically significant, there was a trend for positive affect to decrease more in the c group (mc = − . , sd = . ) compared to the td group (mtd = − . , sd = . ) in response to the pasat. controlling for baseline affect, ancova did not reveal a significant group effect on change in negative affect f( , ) = . , p = . . although not statistically significant, the mean change in negative affect was smaller in the c group (mc = . , sd = . ) than the td group (mtd = . , sd = . ), see figure . int. j. environ. res. public health  ,  ,       of    table  . baseline characteristics of participants.  characteristic  therapy dog (n =  ) control (n =  ) p‐value    mean (sd) or n (%)  mean (sd) or n (%)    age, years  .  ( . )  .  ( . )  .   female, n (%)   ( . %)   ( . %)  .   ethnicity, n (%)      .   black/african american   ( . %)   ( . %)    white/caucasian   ( . %)   ( . %)    other   ( . %)   ( . %)    pas  .  ( . )  .  ( . )  .   pss   ( . )  .  ( . )  .   panas        positive  .  ( . )   ( . )  .   negative  .  ( . )  .  ( . )  .   pas:  pet  attitude  schedule;  pss:  perceived  stress  scale;  panas:  positive  and  negative  affect  schedule;    eda: electrodermal activity.  . . effect of therapy dog exposure on affective reactivity  controlling for baseline affect, ancova did not reveal a significant group effect on change in  positive affect, f( ,  ) =  . , p =  . . although not statistically significant, there was a trend for  positive affect to decrease more in the c group (mc = − . , sd =  . ) compared to the td group  (mtd = − . , sd =  . ) in response to the pasat. controlling for baseline affect, ancova did  not reveal a significant group effect on change in negative affect f( ,  ) =  . , p =  . . although  not statistically significant, the mean change in negative affect was smaller in the c group (mc =  . ,  sd =  . ) than the td group (mtd =  . , sd =  . ), see figure  .    figure  . buffer effect of therapy dog exposure on positive and negative affect.  . . effect of therapy dog exposure on physiological reactivity  controlling for baseline eda, ancova showed a significant effect of group on eda change  from baseline to post‐stress, f( ,  ) =  . , p <  . . specifically, the td group showed a lower  increase in eda in response to the pasat compared with the c group (mtd =  . , sd =  .  vs.  mc =  . , sd =  . ). see figure  .  - - - m e a n a ff e c t c h a n g e s c o re change in affect positive affect negative affect control group therapy dog group figure . buffer effect of therapy dog exposure on positive and negative affect. . . effect of therapy dog exposure on physiological reactivity controlling for baseline eda, ancova showed a significant effect of group on eda change from baseline to post-stress, f( , ) = . , p < . . specifically, the td group showed a lower increase in eda in response to the pasat compared with the c group (mtd = . , sd = . vs. mc = . , sd = . ). see figure . int. j. environ. res. public health , , of int. j. environ. res. public health  ,  ,       of      figure  . buffer effect of therapy dog exposure on mean electrodermal activity.  . . moderating role of pet attitude in the relationship between therapy dog exposure and stress reactivity  anova revealed no significant  interaction between group and pet attitude on change  in  eda, f( ,  ) =  . , p =  . . subgroup analysis restricted to td participants showed no effect of  high  vs.  low  pet  attitudes  on  eda, f( ,  )  =  . , p =  . .  these  results  were  confirmed  by  regression analyses.  . discussion  to date, a wealth of research has shown that pet ownership and therapy dog exposure can have  tremendous beneficial effects for persons of all ages [ ]. research has shown that the presence of  one’s pet during stress induction may buffer physiological reactivity [ , ]. previous research also  shows that exposure to a therapy dog can have beneficial effects in patient populations and can  modulate physiological indices of stress such as blood pressure and cortisol [ ]. this study adds to  the wealth of knowledge in this area as it is the first study to show that interacting with a therapy  dog for as little as   min may significantly buffer the stress response to a subsequent stressor.  although the current findings are limited to university students, it is imperative to examine this  population as they commonly report heightened levels of stress. indeed, high stress levels in this  population have been shown to associate with poor psychological outcomes, including increased  levels of depression and anxiety  [ ]. unsurprisingly, a  large number of undergraduate students  report that they desire access and information about effective stress reduction methods available on  campus [ ].  in accordance with the study hypothesis, therapy dog exposure significantly buffered the stress  response, as measured by eda. this is the first study to show that interacting with a therapy dog  can dampen physiological reactivity in response to a future stressor, when the therapy dog is not  present. in contrast, although a trending result was found for positive affect, the current study did  not find therapy dog exposure to significantly influence self‐reported affect in response to a stressor.  although null findings were not predicted, the contrast in findings between the physiological data  and self‐report data is not surprising. indeed, it is well documented that objective measures of stress  are not highly correlated with self‐report measures [ ]. self‐report measures may be affected by a  number of extraneous variables,  including personality and response bias. accordingly, previous  studies using affect as an outcome variable have been mixed; therapy dog exposure has been found  to  associate  with  increased  feelings  of  calmness  [ ]  and  decreased  depressive  symptoms  [ ].  however, studies have also shown that interaction with a therapy dog can result in no change in  dysphoria, positive affect [ ], or mood in general [ ]. although not statistically significant, it is  worth noting that participants exposed to a therapy dog reported a smaller decrease  in positive  m e a n µ s c h a n g e s c o re change in electrodermal activity control therapy dog control group therapy dog group figure . buffer effect of therapy dog exposure on mean electrodermal activity. . . moderating role of pet attitude in the relationship between therapy dog exposure and stress reactivity anova revealed no significant interaction between group and pet attitude on change in eda, f( , ) = . , p = . . subgroup analysis restricted to td participants showed no effect of high vs. low pet attitudes on eda, f( , ) = . , p = . . these results were confirmed by regression analyses. . discussion to date, a wealth of research has shown that pet ownership and therapy dog exposure can have tremendous beneficial effects for persons of all ages [ ]. research has shown that the presence of one’s pet during stress induction may buffer physiological reactivity [ , ]. previous research also shows that exposure to a therapy dog can have beneficial effects in patient populations and can modulate physiological indices of stress such as blood pressure and cortisol [ ]. this study adds to the wealth of knowledge in this area as it is the first study to show that interacting with a therapy dog for as little as min may significantly buffer the stress response to a subsequent stressor. although the current findings are limited to university students, it is imperative to examine this population as they commonly report heightened levels of stress. indeed, high stress levels in this population have been shown to associate with poor psychological outcomes, including increased levels of depression and anxiety [ ]. unsurprisingly, a large number of undergraduate students report that they desire access and information about effective stress reduction methods available on campus [ ]. in accordance with the study hypothesis, therapy dog exposure significantly buffered the stress response, as measured by eda. this is the first study to show that interacting with a therapy dog can dampen physiological reactivity in response to a future stressor, when the therapy dog is not present. in contrast, although a trending result was found for positive affect, the current study did not find therapy dog exposure to significantly influence self-reported affect in response to a stressor. although null findings were not predicted, the contrast in findings between the physiological data and self-report data is not surprising. indeed, it is well documented that objective measures of stress are not highly correlated with self-report measures [ ]. self-report measures may be affected by a number of extraneous variables, including personality and response bias. accordingly, previous studies using affect as an outcome variable have been mixed; therapy dog exposure has been found to associate with increased feelings of calmness [ ] and decreased depressive symptoms [ ]. however, studies have also shown that interaction with a therapy dog can result in no change in dysphoria, positive affect [ ], or mood in general [ ]. although not statistically significant, it is worth noting that participants exposed to a therapy dog reported a smaller decrease in positive affect after completion of the stress task than participants in the control group, suggesting that a recent interaction with a int. j. environ. res. public health , , of therapy dog may impact affective reactions to subsequent stress. the ability to mitigate the impact of stress on positive affect has intriguing implications, particularly since positive affect is associated with increased social engagement [ ] and subjective wellbeing [ ]. with respect to negative affect, while participants exposed to the therapy dog tended to display a greater increase in negative affect compared with participants in the control condition, it is important to note that participants in the control group reported a slightly higher mean negative affect at baseline. therefore, these findings may be explained by a ceiling effect with respect to possible change in negative affect following the stressor. surprisingly, pet attitude did not moderate the stress-buffer effect of therapy dog exposure. although this area is relatively unexplored in the literature, this finding differs from one study conducted in that found a significant positive correlation between positive pet attitudes and reduction in mean arterial pressure, systolic pressure, and diastolic pressure while petting a dog at rest [ ]. the lack of significant findings regarding the relationship between pet attitude and stress reactivity in the present study may be explained by the characteristics of the current sample. the mean score for pet attitude was relatively high overall (m = . ). this indicates that a larger sample is needed to explore this relationship, where there is a wider distribution of participants scoring low on positive pet attitudes and those scoring high on positive pet attitudes. however, in the context of a university sample, the fact that a majority of students display a positive attitude towards pets may suggest that therapy dog exposure within the university is a viable stress-management program for undergraduates. although the current findings are promising, the study was not without limitations. the largest limitation was the relatively small sample size. although there were sufficient participants per group to detect a significant difference in eda, the sample may not have been large enough to assess the moderating role of pet attitudes. however, even with a larger sample size, the challenge of selection bias would likely remain. that is, students who dislike or fear dogs will likely choose not to participate in this research. this challenge may be addressed using more ecologically valid research designs, including the assessment of students who attend therapy dog sessions at their university. another study limitation was that the majority of the sample was female. this is a consistent challenge with research, and is similar to previous studies that have largely based their findings on female participants (e.g., [ ]). given the importance of sex and gender differences in stress physiology [ ], it is important to examine whether the buffer effect of pet therapy is moderated by gender or sex. additional research is needed to determine how pet attitudes and history of pet ownership moderates the beneficial effects of pet therapy on stress physiology and health outcomes. further, research examining the longevity of the stress buffer effect is needed to provide more insight into how long individuals can benefit from therapy dog exposure. currently, there is a growing amount of interest in the student population for the use of therapy dogs as a method of stress reduction [ ]. qualitative reports suggest that therapy dog programs may decrease stress among university students who experience stress [ ]. however, these programs require systematic evaluation to assess how therapy dog programs are helping student populations. we hope that this study will encourage additional research, assessing therapy dog exposure as a stress buffer in different populations that report relatively high levels of stress, including a more diverse group of university and college students from low socio-economic communities. . conclusions this study provides support for the use of therapy dog exposure as a viable stress-management tool to decrease stress physiology in undergraduate students, a segment of the population that displays increasing negative stress-related physical, mental and emotional health outcomes. acknowledgments: many thanks to the st. john’s ambulance therapy dog program for partnering with us on this project, and to carson pun for his technical expertise in physiological monitoring. author contributions: both alexandra j. fiocco and anastasia m. hunse conceptualized the project, analyzed the data, and co-wrote the manuscript. anastasia m. hunse conducted all testing procedures. int. j. environ. res. public health , , of conflicts of interest: the authors have nothing to disclose. references . espejo, e.p. an examination of abnormal stress processes in the risk for depression and anxiety disorders. ph.d. thesis, university of california los angeles, los angeles, ca, usa, . . vogt, t.m. aging, stress, and 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[crossref] [pubmed] . binfet, j.; trotman, m.l.; henstock, h.d.; silas, h.j. reducing the affective filter: using canine assistaned theraoy to support international university students; english language development. bc teal j. , , – . © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . / .onf. - http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . / - x. . . http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . / - . . . http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /psy. http://www.ncbi.nlm.nih.gov/pubmed/ http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	materials and methods 	participants 	procedure 	measures 	stress induction 	stress buffer 	physiological stress measures 	questionnaires 	statistical analyses 	results 	participant characteristics 	effect of therapy dog exposure on affective reactivity 	effect of therapy dog exposure on physiological reactivity 	moderating role of pet attitude in the relationship between therapy dog exposure and stress reactivity 	discussion 	conclusions this is the author’s version of a work that was submitted/accepted for pub- lication in the following source: rakotonirainy, andry, schroeter, ronald, & soro, alessandro ( ) three social car visions to improve driver behaviour. pervasive and mobile computing, , pp. - . this file was downloaded from: https://eprints.qut.edu.au/ / c© copyright please consult the authors notice: this is the author’s version of a work that was accepted for publication in pervasive and mobile computing. changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. changes may have been made to this work since it was submitted for publication. a definitive version was subsequently published in pervasive and mobile computing, [vol#, issue#, (date)] doi: . /j.pmcj. . . notice: changes introduced as a result of publishing processes such as copy-editing and formatting may not be reflected in this document. for a definitive version of this work, please refer to the published source: https://doi.org/ . /j.pmcj. . . https://eprints.qut.edu.au/view/person/rakotonirainy,_andry.html https://eprints.qut.edu.au/view/person/schroeter,_ronald.html https://eprints.qut.edu.au/view/person/soro,_alessandro.html https://eprints.qut.edu.au/ / https://doi.org/ . /j.pmcj. . . three social car visions to improve driver behaviour andry rakotonirainya,, ronald schroetera, alessandro soroa,b acentre for accident research road safety - queensland bcomputer human interaction group queensland university of technology australia abstract the social cost of road injury and fatalities is still unacceptable. the driver is often the main responsible for road crashes, therefore changing the driver behaviour is one of the most important and most challenging priority in road transport. this paper presents three innovative visions that articulate the potential of using vehicle to vehicle (v v) communication for supporting the exchange of social information amongst drivers. we argue that there could be tremendous benefits in socializing cars to influence human driving behaviours for the better and that this aspect is still relevant in the age of looming autonomous cars. our visions provide theoretical grounding how v v infrastructure and emerging human machine interfaces (hmi) could persuade drivers to (i) adopt better (e.g. greener) driving practices, (ii) reduce drivers aggressiveness towards pro-social driving behaviours, and (iii) reduce risk-taking behaviour in young, particularly male, adults. the visions present simple but powerful concepts that reveal ‘good’ aspects of the driver behaviour to other drivers and make them contagious. the use of self-efficacy, social norms, gamification theories and social cues could then increase the likelihood of a widespread adoption of such ‘good’ driving behaviours. keywords: social cars, pervasive computing, social norms, cooperative systems, intelligent transport systems email addresses: r.andry@qut.edu.au (andry rakotonirainy), r.schroeter@qut.edu.au (ronald schroeter), alessandro.soro@qut.edu.au (alessandro soro) preprint submitted to pervasive and mobile computing july , . introduction human’s craving for social connectedness continues to grow. social net- works have used web technology to fulfil our insatiable need for social con- nectedness and has unexpectedly changed the way individuals interact with each other. smartphone devices have brought social networks into our cars, however, due to the vehicle’s safety requirements, social networks have never been fully integrated into our driving environment. furthermore, the physical nature of vehicles such as the metal shield prevents natural social interactions between road users. cooperative systems such as vehicle to vehicle (v v) communication offer new location aware services which will allow drivers, in the same vicinity, to share and exchange situational information anywhere and anytime. this, however, raises the elementary questions proposed by this special issue, including ‘who can communicate what, when, how, and why?’ the aim of this paper is to present three innovative visions that furthers the debate around those questions, in particular the question ‘why’. we argue that social pressure are particularly suitable to influence human driving behaviours for the better and that this aspect is still relevant in the age of looming autonomous cars. our visions provide theoretical grounding how v v infrastructure and emerging human machine interfaces (hmi) could persuade drivers to (i) adopt ‘better’ (e.g. greener) driving practices, (ii) reduce drivers aggressiveness towards pro-social driving behaviours, and (iii) reduce risk-taking behaviour in young, particularly male, adults. . . why: humans still matter improving transportation efficiency through operational innovation is crit- ical as our population grows and ages, budgets tighten and consumer prefer- ences shift. aside from important issues such as reducing road trauma, fuel consumption and emissions, we also need future technologies to accommo- date for the road users social needs. the ‘google autonomous car’ is claimed to be ready for the public within years whilst volvo is predicting that within seven years “you won’t be able to crash” its cars by using semi-autonomous technologies such as low-speed collision-avoidance or pedestrian detection. although these valuable endeavours will make significant contributions to transport and safety by removing the control from the driver; our visions complements the (semi-) autonomous technologies where the driver is still responsible for operating the vehicle at strategic, tactical and operational levels [ ]. it has been shown that driver’s decision making is heavily influ- enced by the social setting. driving is a socially regulated behaviour [ ]. normative factors have been shown to have influence on speeding behaviour; for example, how driver perceptions of the beliefs, attitudes, and actions of their peers towards speeding can influence driving speeds [ ]. the following subsections draw attention to the question as to ‘how’ social information will be able to be communicated in real-time. they introduce several underlying, emerging technologies that will ultimately enable our visions. . . how: intelligent transport systems and cooperative systems intelligent transport systems (its) concern the use of information and communication technologies applied to transport infrastructure and vehicles. its have the potential to reduce fatalities and injuries by % across the oecd [ ]. existing autonomous advanced driving assistance systems (adas), which are a subset of its, include examples such as pedestrian detection in bad vision conditions. they generally use various sensors such as radars, cameras, or lasers to gather contextual/situational information about the vehicle’s surroundings (e.g., pedestrian approaching) in order to provide appropriate countermeasures (e.g., warning or breaking). however, such systems often have technical limitations. for example, the sensors’ perception and awareness are limited to the immediate surrounding area of the vehicle, and this can be obscured. cooperative systems, which allow vehicles to communicate with each other to achieve a common goal, are widely recognised as the next big chal- lenge in its (http://www.cvisproject.org). cooperative systems can offer significant improvements in the safety of all road users by increasing drivers’ awareness given that % of vehicle crashes are due to human errors. co- operative systems can also improve the quality and reliability of information available to drivers about their immediate and distant environment. most of existing approaches consist of exchanging the current vehicle kinematics and the whereabouts of hazards between two vehicles with the view to anticipate crash avoidance. however, cooperative systems such as v v could be used to facilitate location aware peer to peer communications between road users. its resembles the infrastructure for ubiquitous computing in the car. it encompasses a) all kinds of sensing technologies within vehicles as well as road infrastructure, b) wireless communication protocols for the sensed in- formation to be exchanged between vehicles (v v) and between vehicles and infrastructure (v i), and c) appropriate intelligent algorithms and computa- tional technologies that process these real-time streams of information. as such, its can be considered a game changer. it provides the fundamental basis of new, innovative concepts and applications, similar to the internet itself. the information sensed or gathered within or around the vehicle has led to a variety of context-aware in-vehicular technologies within the car. a sim- ple example is object detection, which stops the vehicle when sensors (camera or radar) detect an object within the the trajectory. we refer to this type of context awareness as vehicle/technology awareness. v v and v i com- munication, often summarised as v x, enables the exchange and sharing of sensed information amongst cars. as a result, the vehicle/technology aware- ness horizon of each individual car is expanded beyond its observable sur- rounding, paving the way to technologically enhance such already advanced systems. . . . limitation: security cooperative systems will exacerbate the need for strong security. driving performance, location and identity (car registration) could easily be tracked with existing technology. privacy has been hailed as a potential major issue in cooperative systems. the human user is often the weakest link in the security chain of a software system. changing security profile whilst driving is cognitively more challenging than performing it in a desktop environment. a poor security usability in the v x context could lead to serious security vulnerabilities that can be exploited for criminal purpose. “the system must be easy to use and must neither require stress of mind nor the knowledge of a long series of rules” [ ]. . . . limitation: reliability of exchanged information the human computer interfaces (hci) research community has been looking at how drivers could most effectively receive and act upon received information and how information can be delivered with the least amount of unintended consequences, such as distraction [ ]. the design of hci for cooperative applications is still in its infancy. most in-vehicle hci research was conducted for advanced driving assistance systems (adas) with the underline hypothesis that the information presented to the driver are highly accurate and reliable. such assumptions are no longer valid in cooperative systems environments using vehicular ad-hoc networks (vanet). in previ- ous work we have shown that the . broadcasts service, which is the building block of v v communications, cannot be reliable [ ]. each car can have different perception of their location (e.g. by using gps), reaching agreement between different cars about their respective relative positions re- quires complex data fusion and conflict resolution mechanisms which do not necessarily provide the most accurate information. in [ ] we further explore the possibility of modeling and simulating the benefits of cooperative sys- tems based on inter-vehicular communication with the aim of implementing a freeway emergency braking scenario. while our model confirms (together with related research) that collaborative system can reduce the number of crashes, yet the average crash severity appears to remain constant, which stresses on the urgency of more work on such topics. . . how: new hci & augmented reality novel hci paradigms, such as tangible, gestural and manipulative in- terfaces, draw their theoretical soundness from various theories of embodied cognition, e.g. kirsh and maglio’s epistemic action [ , ], dourish’s em- bodied interaction [ ] and hostetter and alibali’s visible embodiment [ ]. while these works have had a tremendous impact on human-computer in- teraction (hci) and particularly on computer supported cooperative work (cscw), a translation to the road transport domain is necessary to take into account the peculiarities of the interaction between drivers. in addition, any theory or model of human machine interaction in the context of driving be- haviour that fails to include social concepts could be argued to lack a critical element. our visions are placed in future scenarios where we assume novel inter- faces to be context aware and natural to effectively convey information when it is safe to do so, i.e., when they do not increase the information overload of the driver. conceptually, our visions are irrespective of the modality of interaction, although the examples in the following sections are depicted visually. nev- ertheless, given the current state of ar glasses and huds, we do see the biggest potential in visual interfaces to convey (so output rather than input) information in such way that it augments reality with an increased ambient, social awareness. we therefore propose to introduce these augmented reality concepts via head up displays (huds). in the past, huds have been developed and primarily used in fighter jets as a way to convey visual information to the pilots in the least distracting way. in luxury cars, huds are considered to be the safest way to convey visual information to the driver, e.g., speed, navigation, etc. in the not so distant future, such displays are going to enter a wider consumer market, examples include new wearable computing devices, such as augmented reality (ar) glasses (e.g. google project glass), or huds specifically designed to be retrofitted in cars (e.g. pioneer cybernavi). using such technologies to convey social information in cars is a relatively new field. the hci can augment the driver’s social perception by adding, in his/her field of view, elements that improve social awareness, essentially creating what we refer to as the ‘social car’ [ ] [ ]. we have shown that the use of, for example, avatars on huds can help drivers to safely negotiate intersections [ ]. . . social car as mentioned above, in this paper, we draw attention to those application areas of sensing and v x technologies, where the driver’s behavior and hence the socio-psychological perspective plays a more pivotal role. the focal points of our research around the social car is illustrated in fig. . the vehicle first ( ) gathers or senses social information about the driver and the driving behaviour. we purposely keep the definition of what that information might be very abstract, but will provide concrete examples in our vision sections. generally, this information can range from broad social network information to the driver’s current facial expression, or from the driver’s historical driving data to the current revs of the engine. note, that it is not the type of information that makes it social, but the fact that it is shared. for example, applications that gather or sense infor- mation and feed it back to the driver ( in fig. ) does create an increased self-awareness in itself (a simple example is the speedometer). however, as we will show in vision a, this self-awareness has the potential to be intensified through the social layers. hence, our definition of the social car is a car with the ability to share social information with other road users through v x technologies, e.g. ve- hicular ad-hoc networks (vanet) [ ]. using these v x technologies, the sensed information can then be ( ) passed to surrounding drivers for an in- creased direct social awareness, or ( ), pushed even further, into the cloud, where it is collected and visualized for an increased, collective social aware- ness within the driving community at large. our visions presented in this paper focus on these levels of social awareness with a view to improve driving behaviours. . vision a: social norms and self-efficacy to motivate better driv- ing behaviours the development of future in-car technology interventions can borrow design strategies from outside the driving context. previous technologies, for example, have aimed at helping users to change behaviors in order to lose weight, eat better, exercise more, stop smoking, use less energy, recycle, etc. [ ]. such experiences have contributed towards the establishment of concrete design strategies [ ]. applications specific to drivers behavior change are promising, although in their infancy, and despite evidence of their effectiveness, acceptability, per- ceived usefulness and possible drawbacks being still unclear (see e.g. [ , ]. building on the ubiquity and flexibility of smartphones, a number of appli- cation have emerged that combine personal mobile sensing and persuasive strategies, most notably with the aim of promoting a more economic driving behavior [ , , , , ] other examples of in-car persuasive technologies include conversational entertainment systems aimed at engaging the driver [ ], sensing and pro- viding feedback on driving mistakes [ ], presenting contextual information at the dashboard to prevent speeding [ ] , to mention but a few. the present vision articulates a novel approach to persuasion that lever- ages the role of social norms and self-efficacy in order to achieve a change in behaviour. . . social norms our social life is characterised by norms that manifest themselves as at- titudinal and behavioural uniformities among people. social norms can be viewed as rules and standards that are understood by members of a group, and that guide and/or constrain their social behaviour [ ]. these norms emerge out of interactions with others, they may be either implicit or explicit, and sanctions for deviating from them come from within the social network itself [ ]. essentially, social norms are conventions emerg- ing from a group of people that direct or specify how people must, should or could behave in various situations. their influence can extend to the attitudes, beliefs and values held by group members. social norms can be seen as a way to maintain stability among the members of a social group or community [ ]. as such, social norms can have a significant influence on individual be- haviour. in fact, norms are one of the principal ways that social groups influence individual behaviour and attitudes [ ]. how strongly an individ- ual is affected by the norms of a certain group is influenced by how important that group is conceived to be for the individual. . . . using social network concepts to influence norms it is widely acknowledged that the use of social networks on desktop or smartphone devices have shaped our shopping pattern, interaction behaviour, and education. however, social networks have not comprehensively been researched or integrated in the driving environment. one reason is that the enabling technologies are still being developed and/or are still limited (see sections . . and . . ), the other reason is that their road safety potential has not been fully recognised. driving context is fairly different from other contexts as it is very fluid, it has legal road rules, and requires constant cognitive attention do perform crit- ical tasks. for example drivers cannot legally use their smartphones whilst driving. driving is a critical task and the use of technology could potentially shift driver’s attention away from the critical task and cause crashes. driver distraction, although under reported, is estimated to contribute to percent of road crashes [ ]. on one hand, the use of social networks have been thoroughly investigated outside the driving context. on the other hand, a large body of research in ergonomic and human factors have been conducted in the area of human machine interface (hmi) to minimise driver distraction [ ]. however, the impacts of social network information on driver behaviour has not received much attention despite its potential to improve mobility, safety and carbon footprint, a shortcoming that this paper aims to address. changing behaviour with the use of real time human machine interface (hmi) interfaces (e.g. feedback about driving performance) is a psycho- logically and socially complex problem. unless the driver already holds a strong goal (e.g. to be eco-friendly), the feedback will only inform, but will not necessarily motivate sustainable action. attitudes, beliefs and values are learned psychological constructs that have been used successfully to motivate behaviour changes (see e.g. [ ]) outside the driving context. furthermore, individuals generally respond to the actions and belief of their peers. the theory of planned behaviour (tpb) is a behavioural science theory which stipulates that a given behaviour performed by a person depends upon a combination of particular individual and social factors [ ]. in the driving context, social norms have already had a regulatory role. for example, inten- tions to drink and drive are influenced by different factors including attitudes, probability of being caught and social norms [ ]. today, the advent of cooperative systems such v v combined with ex- ponential growth of social networks offers unique and unprecedented oppor- tunities to make a targeted behaviour a contagious social norm transmitted by v v communication. . . self-efficacy drivers do not simply react to their immediate environment, but are in- volved in complex forethought and decision making processes. a substantial body of converging evidence shows that perceived self-efficacy significantly influences human self-development, adaptation and change [ ]. self-efficacy is our belief in our ability to succeed in certain situations. self-efficacy is a social cognitive theory in which perceived self-efficacy is a major determinant of intention. a decision based on misjudgments of our capabilities to reach a goal could produce detrimental consequences, e.g., proper appraisal of one’s own efficacy has considerable value. there is no all-purpose measure of per- ceived self-efficacy [ ]. self-efficacy assessment has not been comprehensively used in designing feedback in driving situations. the use of self-efficacy pro- vides valuable information on driver acceptability and driver inclination to adopt a particular behaviour in all circumstances with the view to assess the true benefits of the changed behaviour. . . example: social sharing to create social norms and improved self-efficacy the ability of v v to exchange social information via new forms of in- vehicle hmi could influence different types of behaviour such as drivers’ speed, eco-driving practice, aggressiveness or other aberrant driving behaviours. v v and crowdsourcing mechanisms provide the ability to capture snapshots of general behaviour of peers (e.g. average speed on school zone). it also pro- vides the opportunity to identify vehicles violating the social norm. such new mechanisms will act as strong incentives for complying and belonging to the social norm. the hmi, which conveys social information, needs to be carefully crafted to persuade users to use it. we propose to introduce augmented reality concepts to convey social cues in cars. the hmi, presented on head up display (hud), will augment the driver’s social perception by adding, in his/her field of view, elements that improve social awareness. we hypothesise that an augmented reality social display will create a ‘social norm’, which will persuade, or positively reinforce drivers to adopt behavioural improvement in more powerful ways, based on the theoretical grounding of the effects of social norms. for example, green leaf displays that convey how efficient a driver drives already exist in cars today. however, they are limited in a way that the information they convey is not shared amongst peers or other drivers to create a social norm (c.f. fig. , where the number of green leaves shows how environmentally responsible other drivers are), nor do they convey how a driver may have improved over time in comparison to other drivers to create an improved self-efficacy. overall, advances in v v and hmi will allow us to design more impactful hmis by leveraging social norms and self-efficacy theory to improve good driving behaviours, such as eco-driving, aggressiveness or speeding, from a human perspective. . vision b: sharing social cues to foster pro-social driving be- haviours . . the car: an isolating metal shield social scientist leckie refered to cars as a ‘semiprivate metal containers’ [ ], because driving a car is not conducive to rich social interactions between drivers. this is partly due to the car’s metal shield, which tends to isolate and anonymise drivers, and prevents exchange of social cues. the metal shield prevents drivers from feeling the social presence of another human being behind another steering wheel. understanding the relationships that drivers form with their car and places is important to understanding interaction between road users. cars and their immediate surrounding have been demarcated as the driver’s own territory [ ]. territories exist to meet both physical and social needs, while being temporarily or permanently owned, controlled, marked or personalised, and potentially defended by occupants or owners [ ]. the physical size of the territory is larger than the size of the vehicle. the overlap of territories can trigger conflicts (e.g. following too closely). the metal shield reinforces the notion of this territory and could be seen as obstructing social contacts. lupton [ , ] articulates this idea in quite provocative terms: “when one is driving, one becomes a cyborg, a combination of human and machine. the notions of individual space, social norms and relationships change to suit this combination, to the point that drivers tend to humanise cars or, reversely, to relate to other drivers as machines, thus dehumanising them”. as a result, at the steering wheel, we all experience an inhibition of our non-verbal communication capabilities with other road users. we have dif- ficulty in establishing eye contact, in interpreting facial expressions, and in using gestures to regulate social interaction; we are limited in our capac- ity of pointing out our interest, intention or attention to other drivers; we feel a lack of social and emotional reciprocity. these ‘symptoms’ could well be the hallmark of autism, and yet represent a common driving situation that results in drivers often behaving aggressively towards other road users, misinterpreting others’ intentions. . . the importance of social cues it is well known that a successful social interaction relies on non-verbal cues: [ ] has estimated that when two people chat, only % of the commu- nication process is verbal, the other % is a result of indirect or nonverbal communication. face perception is an important visual cue, which plays a critical role in social interactions. perceiving and understanding facial movements changes due to various type of emotions plays a central role in social communication. eye contact is a major social cue to driving safely. knowing the inten- tions of other drivers is one of the informal road rules that drivers use to avoid crashes. eye contact is a good predictor of attentional focus [ ] and gaze direction plays a crucial role in the initiation and regulation of social encounters, including the expression of intimacy and dominance [ ]. being able to make eye contact is arguably one of the major foundations of social skills. gestures, in their many forms and nuances, from gesticulation to formal sign languages, are tightly related to our capacity of reasoning, remembering and making sense of the world [ , ], spatial reasoning, such as when giving or receiving directions [ ], and gesturing while explaining or memorizing complex procedures is known to lighten the cognitive load in favour of the competing task [ , , ]. on the other hand, we know very little of how gesturing and non-verbal communication affects the driving task and the negotiation of shared road resources. . . social competence the capacity of effectively and safely negotiating the shared road resource could be seen as a context specific example of social competence: i.e. the desirable skills, the status among peers, the ability to form effective relation- ships and achieve specific goals. rose-krasnos proposes a framework that defines social competence as effectiveness in interaction relative to specific contexts or domains, both for the self (e.g. personal goals) and the others (e.g. aspects of competence that involve collaboration and connectedness). among the many skills on which social competence is built, e.g. social, emotional and cognitive abilities [ ], an important role is played by social skills, social communication, interpersonal communication, emotional com- petence, as well as the ability to respond flexibly to challenges, form effective relationships and take another’s perspective, as emphasizes e.g. in [ ]. all such skills seem to be compromised or obstructed when driving: for exam- ple a majority of drivers regard themselves as less risky and more skillful of the average fellow driver [ ]. despite this, drivers struggle to re-establish a channel of social communication, and invent means of exchanging non- verbal cues, using those tools that they have at hand: headlights, hazard lamps, blinkers, and of course, hand gestures, in what renge has dubbed ‘roadway interpersonal communication’[ ]. . . from driver aggression to pro-social behaviour adopting a pro-social behaviour is commonly considered a good driving practice [ ]. moreover, the inability to express or perceive appropriate social interactions between drivers could result in aggression, selfish driving and anti-social behaviour. in other words, driving can make us angry, and anger at the steering wheel kills. in a recent survey % of drivers admitted to have verbally abused an- other driver; remarkably % of them felt such act to be justified [ ]. driver aggression can take many forms. soole and colleagues report that a larger majority of cases consist of mild aggression (such as verbal abuse, obscene gestures and tailgating). however, up to % of motorists reported severe aggressions, e.g. having been chased, run off the road, or assaulted [ ]. it is difficult to estimate how aggressive driving contributes to crashes, partly due to a lack of consistency in the use of terms such as driver aggression, hostile or angry driving, road rage, etc. [ ]. although the cases of road anger escalating to physical aggression are relatively unusual, several studies show that aggressive driving is associated with increased risk of crashes [ ], and aggressive behaviour has been reported to be a contributing factor in a majority of crashes [ ]. the reasons why drivers are so prone to getting angry are not limited to isolation and anonimity. personal and situational factors, such as age and sex, previous anger or stress, competitiveness, sensation seeking, anonymity, road congestion and time pressure, all participate to exacerbate anger episodes [ ]. subjective interpretations of the behaviour and motivation of others rep- resent however one major factor. anger, when articulated, is an important component of social interaction; it has the function of soliciting cooperation or apology from a supposedly offending person, or to direct accordingly the blame of onlookers. in face to face interaction, anger typically cools down as soon as an acknowledgement is received [ ]. in the car, attempts of express- ing anger and receiving feedback or apology are limited: social cues such as voice tone or face expressions are unavailable unless overly exaggerated, and cannot promptly reach other drivers. similarly, the offending driver will only receive over-amplified expressions of anger. such disproportion and the lack or delay of feedback exacerbates issues of anger [ ]. . . sensing and sharing social cues to reduce driver aggression in our vision, future cars will exploit v v infrastructure to support and enhance drivers’ social competence. existing sensors can detect, interpret and transmit different forms of emotion [ ]. in-vehicle technology combined with cooperative systems can be used to convey social cues (in this vision, these cues include eye gaze direction, facial or emotion expression) which can be collected with in-vehicle sensors. sensing technologies for driver behavior and natural user interfaces are reaching their maturity and are in some cases ready for adoption in industry, e.g. drowsiness detection and voice activated commands. other technolo- gies, though promising as research topics, are still young and immature, but developing fast. techniques and tools exist that are capable of classifying the emotional state of a subject from (combinations of) streams of signals [ , , ]. such signals include linguistic and paralinguistic cues in speech [ , , ] and have been proven to be effective despite of the challenges related to the typically noisy environment in the car [ , ]. physiological measures (e.g. heart rate, blood pressure, galvanic skin response, respiration rate), though generally more invasive, deliver substan- tially more accurate measures of emotional arousal. mit’s smartcar project compared electromyogram, electrocardiogram, galvanic skin response and respiration, and trained appropriate recognizers to an impressively accurate prediction rate[ ]. using facial expressions indicator of emotional arousal is obviously less accurate, but it has the distinct advantage of being more accessible [ ]. furthermore, it can be combined with other modalities, such as speech, for better recognizing the emotional state of the driver [ ]. attempts have also been made to recognize context information (e.g. traffic conditions, presence of pedestrians) and corresponding behavioural patterns on the drivers’ part (such as eye gaze and body posture) with the goal of predicting their attentiveness and intentions [ , ]. gestures have been explored as a means of controlling the in-vehicle in- formation system (e.g. [ , , , , , ]). the rationale behind such explorations is that gesture based interaction could reduce the visual demand of secondary controls. note, however, that scientific evidence of an advantage for gesture based interfaces over more traditional paradigms, with respect to driver distraction, is still missing [ ]. finally (though without any aim of being comprehensive), eye gaze in the car has been extensively used in road safety and its studies [ ]. for example, previous research has demonstrated that perceiving the eye gaze of other drivers could influence driver behaviour [ ], promoting a pro-social behavior. despite the many challenges and open research topics, natural interfaces, such as those ones based on gestures and manipulations, could have the po- tential to foster and reward a pro social behavior. positive evidence comes from a domain as far as health care. tangible user interfaces [ , ] have been found to induce more cooperative and social behaviors in children with autism [ ] [ ], encouraging turn taking and shared attention. socially assistive robots have been proposed to foster and facilitate the interaction between patients and therapists and as a replacement for living pets in pet therapy [ , , ]. shape and format of socially assistive robots varies greatly, from socially proactive robot pets, to ‘intelligent toys’ that reward the patients when they positively interact with the therapist. el kaliouby and colleagues provide a discussion of how affective computing can draw in- sights from the experiences and literature related to social spectrum disorders such as autism [ ]. our aim is to achieve analogous results in the car, as described below. . . example: technology mediated social cues to restore non-verbal commu- nication fig. illustrates our vision. when approaching a busy urban intersection, the driver is assisted in the decision making and in the appraisal of the overall driving situation by devices and displays that enrich the social car. ad-hoc sensors, worn by road users or fitted in the vehicle, will recognize a broad range of context information and socially relevant cues. in this figure, the pedestrian (a) is attempting to establish eye-contact and is waving a hand gesture towards the driver. the yellow car (b) is about to turn right, which can be inferred by patterns of eye-gaze and head pose of the driver. the red car (d) is conducted by a learner. the cyclist (e) is signalling her intention to turn left. at the same time, sensors in the car (c, f, h) are constantly monitoring the behavior and actions of the driver, which will be transmitted to the other road users and made available via appropriate interfaces, which can have diverse forms and shapes, ranging from a) haptic vibrotactile feedback (g) at the steering wheel to b) visual alerts overlayed to the windscreen (augmented reality), to c) wearable or implanted devices. the implementation of a scenario such as the one described here involves the orchestration of cutting edge sensor technology and advanced visual inter- faces. as we have thoroughly discussed in the previous sections, the building blocks of this scenario are available, but have rather been used towards the creation of advanced driver assistance systems, than in the view of supporting socially oriented in-vehicle information systems. on the opposite, in pursuing our vision, we rather explore the applica- tions of such enabling technologies to the collection and sharing of socially relevant cues. once the sensors installed in the car have detected the poten- tial conflicts occurring in the scene, the visual representation depicted in the figure is created and projected in order to reduce the ambiguity and hence the risks. thus, the implementation of the overall vision is the common aim of several smaller initiatives that we are conducting within our lab, each one focused at exploring a specific research issue, and each one described in depth in the the works briefly summarized below. in [ ] we focus on emotion detection as a case study for the recognition and communication of social cues to enrich the way we communicate and ad- dress conflicts when driving. we argue that although most (if not all) efforts in the machine learning domain are aimed at achieving higher recognition rates for those emotions that are more widely and consistently recognized across cultures, such as anger, disgust, happiness, surprise, fear and sad- ness. we have argued that in the driving context these emotions make little sense, and efforts should instead be focused at distinguishing expressions (or moods) that are desirable or not when driving. in [ ] we further explore the use of surrogate measures such as facial expression (emotion) and head pose and movements (intention) to infer task difficulty in a driving situation, showing that a fairly high accuracy can be obtained even on low cost hardware, such as a personal mobile phone. such results help to overcome some of the issues related to the cost of deployment; it is evident, however, that the development and tuning of sens- ing technology is challenging, and a lot of work is yet to be done in order to have affordable and reliable sensors capable of recognizing complex human behavior. even more challenging, however, is the presentation to the driver of such a massive amount of socially related information. the very decision of what information is relevant appears not trivial, as we explore in [ , ] and discuss further on. in [ , ] we explored the possibility of reducing driver aggression by hu- manising cars in traffic situations by representing other drivers through over- layed human-like avatars. in [ ], we further explore several possible hud interfaces in a driving simulator study that aimed at visualizing social cues. we especially focused on applications aimed at mitigating driver aggression, each interface was designed to address one or more main contributing fac- tor of aggressive behavior: anonymity, social isolation, emotional isolation, competitiveness, territoriality, stress. the initial results from our experiments provided precious insights into the technical feasibility of the scenario described here, but also a view of the complexity of the problem. while a detailed report on such works has been presented elsewhere [ , , ], it is important to note here that the successful implementation of our vision for the social car passes through the understanding of the complex social interactions that occur among road users before being able to sense, recognize, and ultimately mediate, such interactions. . vision c: social cars to reduce risky driving . . significant over-representation of young males in road crashes worldwide, over a million people are killed and an additional million are seriously injured on roads annually [ ]. the heaviest toll is paid by young drivers [ ]. young male drivers are at a substantially higher risk of committing and repeating speeding offences [ ] and being involved in speed- related fatal accidents [ ]. young male drivers are also more likely to be distracted while driving, especially through mobile phone use [ ] an issue authorities struggle to address. . . boredom prone young male drivers are driven to distraction and risk there are many underlying factors for the over-representation of young males in motor vehicle crashes. one of those factors is that young males often score highly on sensation seeking measures, and therefore tend to be prone to boredom ([ ][ ][ ]). boredom directly correlates to sensation seeking, but has only received limited attention to date [ ]. boredom is defined as a ‘state of relatively low arousal and dissatisfaction, which is attributed towards an inadequately stimulating environment’ (p. [ ]). in the driving context, boredom leads to the following problem: if the driving environment is not providing enough stimulation, young male drivers tend to seek sensations by taking risks (see fig. ); this includes increasing their speed or diverting their attention away from the driving task [ ], e.g. by texting. the challenge in addressing this core problem is the fact that proneness to boredom (and sensation seeking behaviour) is a hardwired personality factor in young males [ ]. this means that it cannot be changed and that existing road safety strategies such as education programs, punitive fines or awareness campaigns are conceptually flawed in addressing it. indeed, the paucity of research on strategies that tackle driver boredom left authorities unable to deal with technologies and devices that enter the safety critical car space. . . from foe to friend: using social computing devices to aid in safer driving behaviour authorities and the road safety community often perceive new social tech- nologies that enter our cars first and foremost as a threat that aggravates risky driving behaviours by distracting drivers. alarmingly, many road safety researchers tend to focus on their safety impacts only after they have started to be used inside cars, cf. smartphones and texting [ ]. regardless of puni- tive strategies, new technologies will continue to be used within the car, es- pecially by young males who are early adopters. new distracting ubiquitous computing devices fulfilling our insatiable need for social connectedness will enter the car space in the foreseeable future, which could pose an even greater challenge to road safety, e.g., new wearable computing devices, augmented reality (ar) glasses (e.g. google project glass) and head up displays (e.g. pioneer cybernavi). to address this imminent road safety problem, a conceptual breakthrough is needed. instead of indiscriminately and futilely rejecting and demonising such technologies, this vision aims to encourage the discovery of new ways to capitalise their usage towards bringing about safer driving practices. . . curing boredom by safely providing stimuli when needed above, it was established that: . young male drivers are prone to bore- dom; . their need for stimulation is hardwired and not modifiable; . boredom leads to risky driving behaviour; and . existing strategies are conceptually flawed and ineffective. consequently, there is an urgent need to find innovative ways to provide alternative stimuli while driving when needed and when it is safe to do so with the view to curb the road toll. at the core of this visionary research lie the following questions: how can innovative technologies be designed to make safer driving behaviours equally or more pleasurable and stimulating than risky driving behaviours? can the alter- native stimuli be grounded in our need for social connectedness? can they be designed in a way that they replace seeking risky driving stimuli, hence reducing risky driving (fig. )? this concept is innovative in that it represents a paradigm shift. it is neither oblivious to road safety risks nor is it using a patronising approach by telling young male drivers what not to do without offering them an alter- native to satisfy their need. it follows the hypothesis, that providing safe, driving-related and emphpleasurable stimuli through digital, social technolo- gies in the car can replace the urge for risky driving behaviours in young male drivers. the theoretical grounding is based on the premise that these additional stimulations can break the boredom, hence diverting the atten- tion back towards the safe driving task and away from seeking stimulations through risk taking. overall, this as yet unexplored concept articulates the notion of pleasure and safety in one technology intervention with the view to reduce injuries and fatalities. this notion was developed through a pilot study [ ] and evaluated in the road safety domain [ ]. conceptually, this approach is similar to the australian government’s “swap it! don’t stop it!” campaign (www.swapit.gov.au), which encourages australians to swap bad habits with healthier alternatives, or the volkswagen fun theory initiative (www.thefuntheory.com), which presents ideas that make good behaviour more pleasurable or appealing than bad behaviour. for example, the speed camera lottery rewards drivers complying with the speed limit with the chance to win a lottery financed by fines paid by speed offenders. by making good behaviour fun, it reduced average speeds from km/h to km/h. the hypothesis presented above leads to the following research ques- tions: what are driving-related and pleasurable stimuli for different driver archetypes, particularly boredom prone young males? how can new tech- nologies be designed to safely provide pleasurable stimuli at the right time? do pleasurable stimuli have safety benefits by replacing the urge for risky driving behaviours? . . the ‘what’ brings pleasure and safety together the concepts of pleasure and safety have conventionally been portrayed to pull apart from each other (fig. ). car manufacturers and the research community around automotive user interfaces aim to unite the pleasure of driving and road safety by focusing on the question as to how a driver can safely interact (output/input) with various types of data or information with- out causing driver distraction (fig. ). the question how to safely output or input information undoubtedly pushes the technological advancements, mak- ing in-car human-machine (hmi) and human-computer interaction (hci) safer. however, the ‘how’ is only part of the solution. the actual infor- mation or applications (the ‘what’ in fig. ) that form the basis of in-car hmi/hci research have not changed much in recent years. they generally include tasks such as writing/reading sms, emails, or more recently tweets and social media status updates; dialling or making phone calls, selecting from lists of the in-car entertainment system; operating the navigation sys- tem; or, exploring points of interest. little attention has been paid to new types of content and applications. . . example: rewarding achievements online platforms often use socially grounded gamification or ratings to increase fun and engagement, motivate users to come back to use the sys- tem, or enforce certain behaviours or etiquettes. e.g., in foursquare, users can claim mayorships, unlock badges, receive special offers & rewards from retailers while also tracking against friends via a leader board [ ]; on ebay, buyers and sellers rate each other to encourage fair trading. this vision seeks to translate these concepts (without being limited to gamification and rating systems) to road safety in order to stimulate drivers with engaging, driving related tasks when they are being understimulated and to, e.g., motivate drivers to drive more safely and courteously. a simple example to illustrate this concept is depicted in fig. . it shows an augmented reality application that allows drivers to a) rate each other, b) accomplish save driving related achievements by being rated and c) view each other’s achievements. adding such a layer of playful engagement obvi- ously requires save interfaces for inputting and outputting such information, but conceptually it could stimulate the driver with a playful, driving-related task that keeps them ’distracted’ (in a good way) from other risky driving decisions, such as speeding. as mentioned, this presents just one example to illustrate the concept. however, we will explore this innovative approach to road safety in more detail in the future. as demonstrated, the literature in social and psychology research provides the basis to pursue this vision in greater detail. . conclusion the social cost of road injury and fatalities is still unacceptable. the driver is often the main responsible for road crashes, therefore changing the driver behaviour is one of the most important and most challenging priority in road transport. human’s craving for social connectedness is alleviated with the increasing use social networks. however we have shown that social connectedness is somehow restricted in a car. social theories stipulate that one of the most sustainable ways to change individual behaviour is to influence peers. social norms are used to provide a “scheme” on the appropriateness of our own behaviour. there is a plethora of theoretical evidences demonstrating that social concepts could influence driver behaviour. social networks, used and adapted in the driving context, can harbor a flow of desirable moral values such as safety or green driving behaviour. tackling crucial road transport problems such as agressivity, eco-driving and safety with social information, conveyed with v x is an innovative ap- proach. we introduced a simple but powerful concept. it consists of revealing “good” aspects of the driver behaviour to other drivers and make it conta- gious. the use of self-efficacy , social norms and gamification theories could increase the likelihood of a widespread adoption of such “good” behaviour. the use of such social information could make driving more humane. hence, we have shown how v v could convey and establish social norms with the view to positively influence driver’s behaviour. specifically we showed how v v could (i) break the vehicle’s ‘social’ shield, (ii) provide a better perception of ‘presence’ of other road users, (iii) shift our perception of acceptable driving practices (iv) reduce agressivity and (v) improve road safety. cars and v v have never been on the spotlight for being able to change behaviour and spread such moral values. the idea that one’s behavior and actions can influence not only the drivers in the vicinity but also the others connected in our social network is a very powerful concept worth investigating for future research. testing and validating such idea needs to be conducted in naturalistic settings as real-time in-vehicle information is likely to impact positively or negatively on driver behaviour. the net benefit of our proposed concepts is subjected to driver acceptance and market penetration. in the future, our behavior, actions, beliefs and habits are likely to be largely more influenced and impacted by social networks and social media supported by cooperative systems than we ever could have imagined. references [ ] aaafoundation.org, aggressive driving: research up- date, technical report, aaafoundation.org, . url: https://www.aaafoundation.org/sites/default/files/ aggressivedrivingresearchupdate .pdf. 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[ ] m. zuckerman, s. eysenck, h.j. eysenck, sensation seeking in england and america: cross-cultural, age, and sex comparisons., journal of con- sulting and clinical psychology ( ) – . doi: . / - x. . . . list of figures figure : the social awareness layers around the social car figure : the green leaf display showing consumption of other drivers figure : sharing social cues to reduce driver aggression figure : under and over stimulation - boredom and risk figure : under and over stimulation - intervention figure : the what that brings pleasure and safety together figure : rating other drivers and receiving badges for good driver behaviour ugyldig lenke til dokument i vitenarkiv | unit hopp til hovedinnhold direktoratet for ikt og fellestjenester i høyere utdanning og forskning 	 tjenester 	 handlingsplan for digitalisering 	 digitalisering 	 om unit søk meny 	 digitalisering 	 digitaliseringsstyret 	 handlingsplan for digitalisering 	 fagutvalgene 	 tjenesterådene 	 tjenester 	 utdanningstjenester 	 forskningstjenester 	 administrative tjenester 	 bibliotekstjenester 	 digitalt læringsmijø 	 generelle verktøy 	 vårt arbeid 	 prosjekter 	 prosjektrammeverk 	 styringsmodell for informasjonssikkerhet i høyere utdanning og forskning 	 open tilgang (open access) 	 klagenemnder 	 om unit 	 organisering 	 ansatte 	 jobb i unit 	 units vedtekter 	 offentlig journal 	 Årsrapportar og tildelingsbrev 	 personvern og informasjonskapsler 	 generelle tjeneste- og leveransebetingelser 	 dette er de vi er til for 	 aktuelt 	 aktuelt 	 arrangement 	 nyhetsbrev 	 kontakt oss 	 om unit 	 fakturainformasjon 	 presse 	english 	norsk ugyldig lenke til dokument i vitenarkiv brage - åpent vitenarkiv sist endret: . . del: share to linkedin share to facebook share by mail share to twitter du prøver å nå et dokument via en lenke som ikke er gyldig. hvis du vet hvilken institusjon som har publisert dokumentet, kan du finne det i institusjonens vitenarkiv. se liste over vitenarkiv her. you are trying to reach a document via a link that is not valid. if you know which institution has published the document, you can find it in the institution's open access repository. see list of open access repositories here. del: share to linkedin share to facebook share by mail share to twitter fant du det du lette etter? ja nei hva lette du etter? din tilbakemelding hjelper oss å forbedre nettstedet til toppen kontakt hovedkontor: abelsgate , teknobyen, trondheim avdeling oslo: fridtjof nansens vei , oslo telefon: +     e-post: postmottak@unit.no om unit 	 om unit 	 hiring (no) 	 ansatte 	 presse 	 offentlig journal 	 vedtekter 	 personvern og informasjonskapsler 	 tildelingsbrev våre tjenester 	 utdanningstjenester 	 forskningstjenester 	 administrative tjenester 	 digitalt læringsmijø 	 bibliotektjenester 	 generelle verktøy hold deg oppdatert linkedin facebook e-post twitter rss feed meld deg på vårt nyhetsbrev og hold deg oppdatert nyhetsbrev fra unit healing environment: paediatric wards – status and design trend procedia - social and behavioral sciences ( ) – - © published by elsevier ltd. selection and peer-review under responsibility of centre for environment-behaviour studies (ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia doi: . /j.sbspro. . . ncebs shah alam st national conference on environment-behaviour studies, faculty of architecture, planning & surveying, universiti teknologi mara, shah alam, selangor, malaysia, - november healing environment: paediatric wards – status and design trend mohamed yusoff abbas* and roslinda ghazali centre for environment-behaviour studies, faculty of architecture, planning & surveying, universiti teknologi mara, , shah alam, selangor, malaysia abstract based on a pilot study, this paper attempted to chart the current status and design trend of paediatric wards in the klang valley. post-occupancy evaluation (poe) studies were conducted in three hospital wards built five-years apart. data collection involved nhs ( ) evaluation toolkits for healthcare buildings – the aedet evolution and aspect, interviews, and personal observations. overall, a positive design trend towards healing environment was charted in the newer paedetric wards built. however, lacking were paediatric ergonomics considerations and the utisation of audio therapies. implications of the findings were discussed and several design best practices suggested. © published by elsevier ltd. selection and peer-review under responsibility of centre for environment- behaviour studies (ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia. keywords: healing environment; paediatric ward; post-occupancy evaluation; current status; design trend . introduction interest in the creation of healing environment is increasing globally (ananth, ). “healing environment” can be simply described as the overall environment (physical and non-physical) created to * corresponding author. tel.: - - ; fax: - - . e-mail address: myusoff @salam.uitm.edu.my available online at www.sciencedirect.com © published by elsevier ltd. selection and peer-review under responsibility of centre for environment- behaviour studies (ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia open access under cc by-nc-nd license. open access under cc by-nc-nd license. http://creativecommons.org/licenses/by-nc-nd/ . / http://creativecommons.org/licenses/by-nc-nd/ . / mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – aid the recovery or healing process. in contrast to curing, healing is a psychological and spiritual concept of health. as perception is also psychological, there is a likelihood of a relationship between healing and the physical environment. also, as it is well established in the literatures that the physical environment influences human behaviour, there exist a high likelihood tendency that the relationship between healing and the physical environment would be more marked amongst the paediatric population, as they are more sensitive than adults in the perception of the environment (ozcan, ). based on initial conversation with senior hospital staffs, it seemed that post-occupancy evaluation (poe) studies had never been conducted upon existing pediatric wards in malaysia. that triggered the intention of the present research, in particular for being the first. it aimed to establish the status and chart the trend in the design of the paediatric wards. the status involved identifying the degree of conduciveness towards healing in the environment of those existing wards. significance of the study was in determining areas for improvement, so as to aid the healing process further. thus, the research objectives:- to identify the trend which related to the quality status of the physical environment of the pediatric wards; to assess how far childrens’ ergonomics were taken into consideration in the design; to identify whether there were differences in the provisions between wards located in urban and non- urban areas, and to identify problems encountered towards the creation of the healing environment. the goal being in the suggestion of best practices to be adopted in the design of new pediatric wards, or the upgrading of existing ones for the benefit of paediatrics. the strategy of the research design was case studies, while the methodology adopted included site visits, personal observations, interviews and the use of evaluation tools.structure . literature review the role played by the physical setting in the healing process and more importantly for improving patient outcomes and the well-being of families and caregivers had been stressed by several authors such as moore ( ), ozcan ( ) and visentin ( ). joseph ( ) concurred about the influence of the physical environment on the healing process and elaborated further that the physical environment also contributed towards a better quality of life not only for the patients, carers and staffs but also the visitors. there also had been a certain richness and emphasis in defining and describing the healing environment. for example, duncan ( ) and oberlin ( ) opined that such environment could be created by consideration of factors such as colour, shape, lighting, smell, sound and feel. berg ( ) emphasised more on the contribution of nature, daylight, fresh air and quietness to such environment. moran ( ) suggested that creating a more homelike family environment would give benefit to the children as it encouraged children to feel like at home, active and playful. the healing environment as described by varni ( ) involved the “physical and cultural atmosphere created to support families through hospitalization, medical visits, healing and bereavement.” (p. ). proof that such environment might influence patients’ and carers perception about their healthcare providers were based on responses about the patients’ satisfaction levels, being loyal customers and in helping to promote the healthcare to others, and the quality evaluations made. inspired by the global interest and development of the healing environment, the samueli institute, a medical research organization with interest in investigating the healing processes has developed the concept of optimal healing environment (ohe), which it defined as “one where the social, psychological, physical, spiritual, and behavioral components of healthcare support and stimulate the body’s innate capacity to heal itself” (ananth, , p. ). the wholesome approach towards the healing process comprised both the inner and outer environment. the inner environment involved developing healing intention, experiencing personal wholeness and cultivating healing relationship, while mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – the outer environment involved practicing healthy lifestyles, applying collaborative medicine, creating healing organization, and building healing spaces as shown in figure . in relation to anath’s ( ) ohe, of interest to the present research related to the building healing spaces part or physical environment, which enhanced sensory input. that involved nature, outdoor playground, architecture that naturally included the ergonomics considerations, colour, artwork, light, aroma and music. those elements identified not only contributed towards the healing process but also helped the pediatric patients coped with pain and aggression as concluded by nachr ( ). fig. . the optimal healing environment. source: sita ananth ( ), healing environments: the next natural step, explore, vol. , no. , p. ) outdoor environment that could contribute towards the healing environment involved nature and the outdoor children’s playground. the role of nature or the creation of therapeutic gardens towards the healing process had been reported by several studies. for example, whitehouse, et. al. ( ) revealed that garden features in order of users’ preferences included the sound of running water, followed by t h e presence of bright colours, flowers, plants and greeneries, artwork, and the opportunity for multisensory stimulation. they also found that very young pediatric patients who were hospitalized for a longer duration or those with physical or developmental disabilities were responsive and appreciative to such gardens. they recommended in the creation of potential activities that could be done in the gardens by the different users, such as an outpatient or the patients’ healthier siblings. similarly, sherman, et. al. ( ) observed the gardens were used differently according to the category of users or their age group. while the most used was the largest garden with direct patient access, children more than adults interacted with the garden features. they also found that emotional distress and pain where social, psychological, physical, spiritual, and behavioral components of healthcare support and stimulate the body’s innate capacity to heal itself. inner environmment outer environment practicing healthy lifestyles diet exercise relaxation balance applying collaborativem edicine conventional complementar y traditional integrative creating healing organisation leadership mission culture teamwork technology evaluation service building healing spaces nature colour light artwork architecture aroma music cultivating healing relationship compassion empathy social support communication experiencing personal wholeness mind body spirit energy developing healing intention expectation hope understanding belief enhance awareness enhance integration enhance caring enhance awareness enhance medical care enhance process & structure enhance sensory input mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – were lower for all groups when in the garden as compared to in the hospital. similar findings were also reported locally by said ( ). in addition, nachr ( ) concluded that those gardens could help patients to reduce anxiety. in a survey, which involved hospital staff, parents and visitors, about perceptions and their experience of a playgarden, an integration of playgrounds and healing gardens located in a pediatric hospital, turner ( ) revealed that children’s experience during their play in the playground strongly benefited the children’s health. he recommended that the physical environment between indoor and outdoor activity be accessible at all times. also, the playgarden should not only provide space for patients and their families, but also for staff to interact with each other in a park. he also suggested that the playgarden should include a variety of approaches. annunziato ( ) emphasised on features like a river that flows along the window wall which included trees, native plants, and whimsical animal sculptures could help ease the fear of children and provide a space for siblings to play, as well. the evidence by annunziato is to ensure that a sense of welcoming and playful environment appeared in the children’s hospital somehow would reduce patients and staff stress, improve patient safety and improved overall healthcare quality. the importance in ergonomic considerations for the pediatric patients and the related implications had concerned many because the requirements of the children were not the same as the adults. for example, lueder ( ) detailed out the many differences of the physical built of children as compared to adults. luder and rice ( ) elaborated further that children were in continuous development - physically, perceptually, cognitively and socially. also, scanlon et. al., ( ) stressed that due to their nature, children during the pediatric age range were more dynamic than adults and hence characterised many different features which resulted in more potential risks for harm amongst pediatric patients during medical care. according to hourcade ( ), during the course of development, children’s physical maturation affected and limited their capabilities in accomplishing tasks at different age levels. however, he argued that maturation did not guarantee that development would occur. as such, rather than the reliance on maturation he suggested that it would be better to ensure technologies (or facilities) being appropriately sized which not only provided better ergonomics but motivated the children to complete their tasks more comfortably. also, better ergonomics were the outcome in the design details of the facilities provided which empowered patients in taking responsibility for their own health. such offer of independence is “the power of the healing environment” (leibrock, ). in addition, france, et. al. ( ) opined that the creation of a patient-centred setting facilitated safe and efficient care and as such human factors expertise were needed to be involved early in the design process. safety, a very important factor to be considered especially when involving the pediatric patients should be one of the outcomes of the ergonomically-designed paediatric setting. concerned for a much safer environment and products for the pediatric patients had been raised by many. for example, in view of the large number of hazardous products that were designed for or within the reach of the children, smith-jackson ( ) stressed the need for more product safety research which involved the children. also, croasmun ( ) argued that often products or services might have been designed without sufficient knowledge of the end users. as such, improved ergonomics by designing out potential flaws before the occurrence would make a safer setting for the pediatric patients and a better environment for the medical carers. in addition, miller and zhan ( ) revealed that the prevalence of patient safety events frequently involved the very young with a substantial increase in duration of stay and ultimately increased excess charges for the children alone in the us which incurred billions of dollars in . similarly, woods, et. al. ( ) cautioned that patient-specific setting increased vulnerabilities and as such p a t i e n t safety risks must be accounted for in the design and improvement interventions. mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – associated with the risk factors were the many common pediatric conditions such as obesity, asthma and injuries but had little attention from researchers (cummins and jackson, ). the lack of such research was similarly echoed by crev and calhoun ( ) in relation to a wheelchair and seating configuration specifically for children. coupled with the lack of research on ergonomics which concerned the pediatric patients were the limited literatures available. while improving safety in patient-specific setting, such as in pediatric hospitals increased the complexity further to a setting which is already complex and challenging due to the variation inherent in the patient in relation to their ever continuous and dynamic physical and intellectual development, the lack of available knowledge on human factors and ergonomics for the pediatric population only worsened the situation (scanlon, ). due to the biases of such studies which mainly concerned the adult population and in work / educational environments, he encouraged the need for more future research on ergonomic needs of children so that systems of health care can be redesigned to optimize the safety of children and the performance of their care providers. within the constraints of the unavailability of the appropriate literatures, scanlon suggested the critical areas for child-focussed considerations identified by wickens, et al ( ) together with vanderheiden’s ( ) concept of universal design be used as the basis in the study of ergonomics which affected the pediatric population. while wickens and colleagues considered the cognition, size and shape variants, issues of biomechanics and work (or play) physiology, vanderheiden’s universal design emphasised on products, which could be used effectively and conveniently by all regardless of their age and capabilities. scanlon’s proposed framework of human factors and pediatrics is as shown in table . table . human factors and pediatrics: possible design implications. source: scanlon, m. ( ) human factors and ergonomics in pediatrics in pascale carayon (ed) handbook of human factors and ergonomics in health care and patient safety, lawrence erlbaum associates, publisher, london, p. ). human factors considerations pediatric specific issues design implications for children* sensory changes development of sight and hearing in young children use existing knowledge of imperfect senses variation in size and shape small size can circumvent safety features. limit use of interface consider smaller extremes of size for design variation in biomechanics limited strength, leverage can limit use consider consequences of users with developmentally impaired strength work (play) physiology developmentally varied vital signs and energy stores limit endurance consider broader range of users and endurance (strength / patience) cognitive considerations magical vs concrete vs abstract thinking, innate curiousity consider consequences of misuse due to cognitive factors language considerations varied ability to read, comprehend, and express self consider limited abilities in design of interface, directions and safety labelling * design considerations predicated on desired use of device / process by children. alternatively consider safety issues to prohibit use/misuse by children. mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – in relation to colour as another important component for the ohe, park ( ) more recently investigated the value of color in real contexts by measuring color preferences amongst healthy children, pediatric patients and design professionals. he found that the use of more color eventually created better environments for children and their families. artwork in children’s hospital also did provided more cheerful environment and hence contributed towards the pediatric patients’ healing process as revealed by several studies such as by daley ( ), mallay ( ) and eisen ( ). the art therapy by mallay proved to be an effective intervention in coping with ongoing physical, social, cognitive, emotional and psychological squeal of the accident / trauma. it should be noted about an interesting study by coakley ( ) who revealed that pet therapy as a low-tech, low-cost therapy improved mood and was meaningful to hospitalized patients. the study also found that patients had significant decrease in pain, respiratory rate, negative mood state, tension / anxiety and fatigue / inertia and a significant increase in perceived energy level with improved overall mood. thus, pet therapy interventions improved physiological, behavioural and mood outcomes and experiences of hospitalized patients . research design . . strategy the strategy of the research design chosen was post-occupancy evaluation (poe) upon existing paediatric wards both in urban and non-urban locations within the klang valley region in malaysia. . . methodology three hospitals built five-years apart within the klang valley and located in urban and non- urban areas were strategically identified as the setting. it was envisaged that samples for such purposeful selection could depict the design trend of such building type. the methodology for data collection involved site visits, personal observations and photograph documentation, interviews with the clinical staffs and the use of nhs ( ) evaluation toolkits for healthcare buildings – the aedet (achieving excellence design evaluation toolkit) (nhs, a) and aspect (a staff and patient environment calibration toolkit) (nhs, b). both the tools were developed by the nhs, uk to assess the healthcare buildings. the aedet evolution, part of a benchmarking tool assisted in measuring and managing the design quality in the healthcare facilities. it evaluated a design through a series of statements which encompassed the three areas of impact, build quality and functionality. the impact area dealt with the degree to which the building created a sense of place and contributed positively to the lives of users and its neighbours. it involved four sections - character and innovation, form and materials, staff and patient environment and urban and social integration. the build quality area dealt with the physical components of the building rather than the spaces and involved two sections – performance and engineering (the third section which concerned construction was not applicable for the study). the functionality area dealt with issues on the primary purpose of the building and involved three sections - use, access, and space. the aspect measured the manner the healthcare environment can impact both on the satisfaction levels amongst staff and patients and the health outcomes of patients and performance of staff. it involved eight sections – privacy controlled by users, extent of outside views, extent of contact with the natural world, extent users can control their comfort levels, extent of understandability of the mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – building to users, interior appearances, provision of facilities to patients, and provision of facilities to staffs. in each of the sections evaluated in both the aedet and aspect forms, apart from the evaluated score between (lowest) and (maximum), options were available in putting a double weight for factors considered to be of utmost importance . . procedure prior to the site visits for data collection, consents were first obtained from the directors of the hospitals identified through formal applications. preceded by initial briefings about the setup of the hospitals, representatives from the hospitals accompanied the authors and provided responses to the spontaneous enquiries throughout the site visits, in addition to the personal observations made with notations and photographs documented. security was noticeably tight with security personals in all the wards visited. the visits were concluded with a post occupancy evaluation assessment which involved filling up the aedet evolution and aspect forms. . findings and discussions the pediatric wards identified for the study involved hospitals kg (built in ) and pa (built in ) both, located in the urban area and sg (built in ), located in a non-urban area. based on the analysis of both the aedet evolution and aspect tools, the quality of the physical environment conducted upon the three pediatric wards of hospitals kg, pa and sg seemed to reveal a positive trend in the design of such wards. contribution of the p h y s i c a l environment in the healing process were recognised and improved in the newer hospitals built. details about the findings are as summarised below. in relation to the aedet evolution analysis, based on the mid-point score of amongst the nine categories analysed, the oldest hospital kg incorporated only seven categories above the mid-point, pa incorporated eight, while the newest hospital sg incorporated all the nine categories. in fact only sg scored above the . points in all the nine categories while the oldest hospital kg scored below . points in four categories as shown in figure . similar trend seemed to be found in the aspect analysis, based on the eight categories analysed. the newest hospital sg incorporated all eight categories for points above the mid-point score of , while both pa and kg both incorporated six categories each. sg again incorporated all eight categories for points above the . mark, while pa incorporated six categories and the oldest hospital kg incorporated five categories as shown in figure .similar trend seemed to be found in the aspect analysis, based on the eight categories analysed. the newest hospital sg incorporated all eight categories for points above the mid-point score of , while both pa and kg both incorporated six categories each. sg again incorporated all eight categories for points above the . mark, while pa incorporated six categories and the oldest hospital kg incorporated five categories as shown in figure . mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – fig. . summary of the aedet analysis amongst the three pediatric wards of kg, pa and sg fig. . summary of the aspect analysis amongst the three pediatric wards of kg, pa and sg mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – based on the literatures reviewed, earlier studies had revealed that the healing process was influenced by the physical environment. the implication of the findings revealed that despite the location of the newest hospital sg being in a non-urban area, the trend in the design of newer pediatric wards built showed positively in the creation of the physical environment that supported the healing environment. ergonomic considerations for the pediatric population were observed in all the three hospitals, in the provisions of beds, chairs and tables in the mini library, and counter top at the registration section. however, surprisingly those were not considered markedly in the facilities provided in the bathrooms which suited only the adults. another surprise was that the staffs opined those to be not an important provision as most of the patients were in diapers and that the bathrooms were mainly used by the patient’s parents or carers. while that might be the case, perhaps a near perfect environment could have been achieved if provisions in the bathrooms were ergonomically designed for the pediatric population, particularly for the older age group of -year old and older. the intended investigation at the outset of this study in linking the influence of the physical environment in the healing process did not materialise. the investigation revealed that it would not be correct to base just on the recovery rate of patients at the three different hospitals and deduce the hypothesis about the influence of the physical environment with the recovery duration. the reason being each patient’s body resistance was not the same. hence, if one’s body resistance is high, one would recover or heal in a much shorter duration as compared to one with lesser body resistance despite the condition of the physical environment. one possibility might be to identify a perfect match amongst the pediatric population at the three different hospitals, identical in many ways which include age, gender, type of sickness, social background, level of body resistance etc. and then determine and compare the recovery duration. though not impossible, it would certainly be a daunting and time- consuming process in finding the perfect match of subjects to be investigated, which necessitated a much longer study and beyond the scope of the present pilot study. . conclusion and recommendations in conclusion, there seemed to be a positive design trend towards the creation of healing environment in the newer paediatric wards built as compared to the older. however, there seemed to be a startling lack in consideration on ergonomics for the paediatric population and the absent in the utilisation of audio therapeutics in both the older and newer wards. while the ergonomics of the paediatric patients were taken into consideration in the bedroom area, however, those were not considered in the bathroom areas. pertaining to audio therapeutics, absent were soft background music soothing to the ears, or even the trickling sound of water from landscaped garden. best practices that were still lacking in the creation of the healing environment in the paediatric wards include the following:- provide ergonomically-designed bathroom facilities for the pediatric patients provide maximum accessibility to mini-libraries and play areas provided utilise audio therapeutics maximize view of nature or the therapeutic gardens from the patients’ beds provide maximum accessibility to outdoor / therapeutic gardens provide opportunities for activities to be conducted in the therapeutic gardens by the different users (pediatric patients, pediatric patients’ siblings, medical staffs and visitors) those best practices should be seriously considered not only in the design of newer paediatric wards, but also be considered in upgrading the older wards for the benefit of the paediatric population mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – acknowledgement the study was made possible by the full support of universiti teknologi mara (uitm), malaysia. references ananth, s., ( ), healing environments: the next natural step, explore, vol. , no. , p. ] annunziato, l., ( ), playful pediatrics, contract san francisco: vol. , iss. , page. berg,a.v.d., ( ), health impacts of healing environments-a review of evidence for benefits of nature, daylight, fresh air and quiet in healthcare settings, dissertation, university hospital groningen. coakley, a.b. and ellen, k. m., ( ), creating a therapeutic and healing environment with a pet therapy program, complementary therapies in clinical practice, volume , issue , pages - . croasmun, j. ( ), hospital design could be set up for failure, ergoweb, march , http://www.ergoweb.com/news/detail.cfm?id= cummins, s.k., and jackson, r.j., ( ), the built environment and children's health, pediatric clinics of north america, vol. , issue , pp. - daley, a., ( ), hospital prescribes artwork, the, denver, vol. , issue: , pg. . doh ( a), aedet (achieving excellence design evaluation toolkit) evolution http://www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/ dh_ , january doh ( b), aspect (a staff and patient environment calibration toolkit) http://www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/ dh_ , january eisen, s.l., ( ), javascript:void( );the healing effects of art in pediatric healthcare: art preferences of healthy children and hospitalized children, texas a&m university, pages. france, d., j., throop, p., walczyk, b., allen, l., parekh, a., d., parsons, a., rickard, d., and deshpande, j.,k, ( ), does patient centered design guarantee patient safety: using human factors engineering to find a balance between provider and patient needs, journal of patient safety, volume , issue , pp. - joseph, a., ( ) health promotion by design in long-term care settings, the centre for health design, http://www.healthdesign.org/research/reports/longtermcare.php (sep ) krey, c.h., and calhoun, c.l.( ), utilizing research in wheelchair and seating selection and configuration for children with injury dysfunction of the spinal cord, the journal of spinal cord medicine, volume suppl , , pp. s - leibrock, c., ( ) design details for health: making the most of interior designs healing, john wiley & sons inc., new york lueder, r. and rice v., j. b., ( ) ergonomics for children: designing products and places for toddlers to teens, taylor & francis, boca raton, fl lueder, r. ( ), are children just little adults? ergosolutions dec. http://www.childergo.com/childrenadults.htm mallay, j.m., ( ) art therapy, an effective outreach intervention with traumatized children with suspected acquired brain injury, arts in psychotherapy, volume , issue , pages - . miller, m., r., and zhan, c., ( ) patient safety in hospitals a national picture in pediatrics, vol. no. , pp. - moore, d.j.j., ( ), designed to heal modern healthcare, chicago: vol. , issue: ; page , pgs. moran, t., ( ) hospital hotel crain's detroit business. detroit: vol. , issue: , sec. , page . nachri ( ), evidence for innovation, national association of children’s hospitals and related institutions (nachri) issue date: online, posted on: / / http://www.healthcaredesignmagazine.com oberlin, j., ( ), evidence that pediatric settings can heal, health care design, http://www.healthcaredesignmagazine.com/me /dirmod.asp?sid=&nm=&type=publishing&mod=publications% a% aarticl e&mid= f a f be f f &tier= &id= f a ee a dc e fbca, issue date: online, posted on: / / ozcan, h. ( ) healing design: a holistic approach to social interaction in pediatric intensive care units in the united states and turkey, dissertation, texas a & m university, usa park, j.g., ( ), environmental color for pediatric patient room design, texas a&m university said, i., ( ), garden as restorative environment for hospitalized children, universiti teknologi malaysia. scanlon, m., ( ), human factors and ergonomics in pediatrics in pascale carayon (ed) handbook of human factors and ergonomics in health care and patient safety, lawrence erlbaum associates, london, pp. - sherman, s.a., varni, j.w., ulrich, r.s., and malcarne, v., r.s. ulrich, and v malcarne ( ), postoccupancy evaluation of healing gardens in a pediatric cancer center, landscape and urban planning, volume , issues - , pp. - mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – smith-jackson, t.l., ( ), child-centered safety research issues, the proceeding of the xvi annual international occupational ergonomics and safety conference turner, j., fralic, j., newman-bennett, k. and skinner, l., ( ), everybody needs a break! responses to a playgarden survey , pediatric nursing. pitman, vol. , issue ; pg. , pgs. vanderheiden, g., c., ( ) design for people with functional limitations due to disability, aging, or circumstances. in g. salvendy (ed.), handbook of human factors and ergonomics, new york: john wiley & sons, , pp. - . varni, j. w., & marberry, s. o., ( ), creating life-enhancing environments. healthcaredesign, , pp. - . visentin, l., ( ) architecture and well-being: against doctors' orders, by, m.arch., carleton university (canada), pages. whitehouse, s.l., ( ), healing gardens and coping with stress at a children's hospital: a multimethod evaluation, the university of utah, pages. whitehouse, s., varni, j.w., seid, m., cooper-marcus, c., ensberg, m.j., jacobs, j.r., and mehlenbeck ( ), evaluating a children’s hospital garden environment utilization and consumer satisfaction, journal of environmental psychology vol. , pp. - wickens, c.d., gordons, s.e., and liu, y., ( ), an introduction to human factors engineering, addison wesley longman, new york woods, d., holl, j. l., shonkoff, j. p., mehra, m., ogata, e.s., weiss, k.b., ( ), child specific risk factors and patient safety, journal of patient safety, volume , issue , pp - wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ ucla ucla previously published works title impact of splenectomy on thrombocytopenia, chemotherapy, and survival in patients with unresectable pancreatic cancer permalink https://escholarship.org/uc/item/ gf s cc journal journal of gastrointestinal surgery, ( ) issn - authors donahue, timothy r. kazanjian, kevork k. isacoff, william h. et al. publication date - - doi . /s - - -x peer reviewed escholarship.org powered by the california digital library university of california https://escholarship.org/uc/item/ gf s cc https://escholarship.org/uc/item/ gf s cc#author https://escholarship.org http://www.cdlib.org/ original article impact of splenectomy on thrombocytopenia, chemotherapy, and survival in patients with unresectable pancreatic cancer timothy r. donahue & kevork k. kazanjian & william h. isacoff & howard a. reber & o. joe hines received: december /accepted: february /published online: march # the author(s). this article is published with open access at springerlink.com abstract background patients with unresectable pancreatic cancer (pdac) or endocrine tumors (pet) often develop splenic vein thrombosis, hypersplenism, and thrombocytopenia which limits the administration of chemotherapy. methods from to , patients with recurrent or unresectable pdac or pet underwent splenectomy for hypersplenism and thrombocytopenia. the clinical variables of this group of patients were analyzed. the overall survival of patients with pdac was compared to historical controls. results of the total patients, ( %) had pdac and ( %) had pet. all tumors were either locally advanced (n= , %) or metastatic (n= , %). the platelet counts significantly increased after splenectomy (p< . ). all patients were able to resume chemotherapy within a median of . days (range – ). the patients with pdac had a median survival of months (range – ) from the time of diagnosis and . months (range . – . ) from the time of splenectomy. conclusions splenectomy for patients with unresectable pdac or pet who developed hypersplenism and thrombocyto- penia that limited the administration of chemotherapy, significantly increased platelet counts, and led to resumption of treatment in all patients. patients with pdac had better disease-specific survival as compared to historical controls. keywords pancreatic cancer. palliative splenectomy. pancreatic endocrine tumors introduction the pancreas has a diverse cellular heterogeneity and function, and can give rise to a number of histologically distinct malignancies. most malignant cancers originate from the ductal epithelium or endocrine cells and include pancreatic ductal adenocarcinomas (pdac) and malignant endocrine tumors (pets). each histologic type has a different molecular signature and clinical course; pdacs are associated with the worst prognosis, and pets are usually less aggressive. , most patients with pdac ( %) present with locally advanced or metastatic tumors that are unresectable. treatment with gemcitabine-based chemo- therapy has been shown to significantly improve survival, albeit to only a small degree. in contrast, pets usually present at an earlier stage. chemotherapy is determined by the grade of the tumor, with high-grade tumors more likely to respond. – thus, the goal of treatment for unresectable pdac or pet is treatment with chemotherapy. by virtue of the anatomic location of the pancreas, locally advanced pdac or pets can lead to thrombosis or presented at the western surgical association annual meeting on november th, in san antonio, tx. t. r. donahue (*) : k. k. kazanjian : h. a. reber : o. j. hines department of surgery, division of general surgery, david geffen school of medicine at university of california los angeles (ucla), le conte avenue, chs, room - , los angeles, ca - , usa e-mail: tdonahue@mednet.ucla.edu w. h. isacoff department of medicine, division of hematology oncology, david geffen school of medicine at university of california los angeles (ucla), los angeles, ca, usa j gastrointest surg ( ) : – doi . /s - - -x occlusion of the splenic, superior mesenteric (smv), and/or portal (pv) vein(s) with resultant hypersplenism. as in patients with cirrhosis and portal hypertension, the en- hanced splenic function often produces thrombocytopenia. in addition, cytotoxic chemotherapeutic regimens, especial- ly gemcitabine, often induce bone marrow suppression, which results in thrombocytopenia. when this occurs, many patients must stop their treatment, since serious and potentially lethal side effects could develop. we hypothesized that a palliative splenectomy for patients with locally advanced unresectable pdac or pets who developed hypersplenism and thrombocytopenia that limited the administration of chemotherapy, would extend the duration of treatment and improve disease-specific survival (dss). to investigate our hypothesis, we analyzed our experience with patients who were managed with this novel treatment strategy and compared the survival of the pdac subgroup of patients with stage-matched historical controls. material and methods patients approval from the university of california, los angeles office for the protection of research subjects institutional review board was obtained prior to initiating this study. using a prospectively collected pancreatic cancer database, we performed a review of all patients from to with locally advanced or metastatic fine needle aspirate or biopsy (core needle, incisional, or excisional) confirmed pdac or pet who were unresectable and underwent a splenectomy for severe thrombocytopenia that developed during administration of chemotherapy. the pathology reports were generated by one of four gastrointestinal pathologists on faculty at ucla. the clinical, radiograph- ic, and histopathologic findings; treatment and perioper- ative variables; and dss of these patients were examined. clinical variables analyzed included gender, age, and stage at the time of diagnosis, and tumor histology (pdac and pet). radiographic variables analyzed included location of the tumor and pv/smv/splenic vein status (patent vs. nonpatent) on high resolution computed tomog- raphy (ct) or magnetic resonance imaging (mri) scans. treatment variables analyzed included the pre- and post- splenectomy chemotherapeutic regimen administered and tumor response. variables directly related to splenectomy that were examined included length of hospital stay, need for conversion to an open operation, white blood cell count and hemoglobin immediately after surgery (postop- erative day ), and pre- and postoperative platelet counts. preoperative platelet counts were recorded at the last clinic visit prior to surgery. postoperative platelet counts were recorded on the day of hospital discharge. the time to resumption of chemotherapy after splenectomy was also examined. survival analysis for survival analysis, the dss of all patients with pdac from the time of diagnosis or splenectomy was examined. for those patients who died, the date of death was determined from the clinic charts when available, or alternatively, the social security death index (http://ssdi. rootsweb.ancestry.com/cgi-bin/ssdi.cgi) by an exact match between the patient's name and birth date. if alive, the date of last follow-up was taken as the last time the patient was seen in clinic. the two patients with pet were not included in the survival analysis, as pet are less clinically aggressive than pdac. statistical analysis for significance analysis, x and fisher's exact test were used as appropriate. dss was estimated using the kaplan– meier method. all statistical analyses were performed using jmp statistical software (sas corporation, cary, nc). significance was assigned at the . level. results clinical, radiographic, and histopathologic findings from to , patients with unresectable pancre- atic cancer who developed hypersplenism and thrombocy- topenia, which limited the administration of their chemotherapy, underwent a splenectomy at ucla medical center. the distribution of the clinical, radiographic, and histopathologic findings for these patients is listed in composite in table and individually in table . thirteen patients ( %) had primary disease; two patients ( %) recurred after a whipple operation. the median age of patients was years (range to years). nine patients were male ( %) and ( %) were female. most patients had pdac (n= , %), while only two patients had pet ( %). all patients had locally advanced, stage (n= , %) or metastatic, stage (n= , %) disease. nine tumors ( %) were located in the head/uncinate process and ( %) were located in the body/tail. on high- resolution ct/mri, the portal or splenic veins were thrombosed in ( %) patients (fig. ); the three other patients had documented splenomegaly on ct/mri. in fact, splenomegaly was not routinely reported in the radiology report per the usual practice of the ucla gastrointestinal j gastrointest surg ( ) : – http://ssdi.rootsweb.ancestry.com/cgi-bin/ssdi.cgi http://ssdi.rootsweb.ancestry.com/cgi-bin/ssdi.cgi radiologists for pancreas-protocol ct scans or mris. the median spleen weight was g (range – ) but may be an underestimate of the actual spleen size due to morcellation prior to extraction. the spleen volumes are likewise not reported for similar reasons. treatment and procedure variables the median time from the initial diagnosis of cancer to splenectomy was . months ( . – ) during which all patients were administered chemotherapy. chemotherapy was stopped due to thrombocytopenia within weeks of surgery for all patients. most patients with pdac were administered a gemcitabine-based combination therapy (n= , %) both before and after splenectomy; a - fluorouracil ( -fu)-based combination regimen was used less frequently (n= , %). all patients had at least a partial tumor response to both drug treatments; there were no complete responses. there was minimal morbidity associated with the splenectomy. a laparoscopic splenectomy was successfully performed for ( %) patients, while the procedure was converted to an open operation for ( %) patients. excess blood loss was the primary reason for conversion. the median hospital stay was days (range – ) and did not differ between the laparoscopic and open groups (p> . ). recorded immediately after surgery, the white blood cell count (median . × /µl, range . × – × ) and hemoglobin (median . g/dl, range . – . ) did not reveal evidence of bone marrow suppression due to preoperative chemotherapy. at the time of splenectomy, patients had national cancer institute (nci)/eastern coop- erative oncology group (ecog) grade thrombocytope- nia (defined by × – × ), two patients had nci/ ecog grade (defined by × – × ), and one patient had impending nci/ecog-defined thrombocytope- nia. the platelet counts significantly responded to splenec- tomy in all patients, preoperative (median × /µl, range × – × ) vs. postoperative taken immedi- ately prior to discharge (median × /µl, range × – × ), (p< . ). all patients were able to resume full dose of the same chemotherapy regimen after splenec- tomy within a median of . days (range – ). survival analysis the median follow-up for all survivors was months (range – ) from the time of diagnosis and months (range . – ) from the time of splenectomy. the patients with pdac had a median survival of months (range – ) with a -year dss of % from the time of diagnosis, and a median dss of . months (range . – . ) from the time of splenectomy (fig. ). both patients with pet had well-differentiated tumors. one patient died of disease after months, and the other is still alive with disease after months. discussion pdac is the fourth leading cause of cancer-related deaths in the united states, with an overall -year survival of %. in , , patients in the usa were diagnosed with pdac and , died from their disease. the poor outcome of patients with pdac has been attributed to the advanced stage of disease at diagnosis, the poor response to current systemic and local therapies, and the aggressive biologic nature of the disease. resection for pdac provides the only chance for cure, but only about % of patients are eligible for surgery. even those patients who undergo a “curative resection” have a -year survival rate of % in the best series. most patients ( %) present with locally advanced or metastatic tumors, and they have a median survival of less than or months, respectively. chemotherapy can significantly extend dss and decrease disease-related morbidity. pets have been studied much less frequently than pdac primarily due to their low prevalence; only about , new pets are diagnosed annually in the united states. – pets are categorized as functional or nonfunc- tional depending on whether the secreted peptide is biologically active and produces a clinical syndrome; about % of nonfunctional pets secrete peptides that are table composite patients' clinical, radiographic, treatment, and histopathologic characteristics age (median years) ( – ) gender male ( %) female ( %) histopathology pdac ( %) pet ( %) location head/uncinate ( %) body/tail ( %) vein thrombosed ( %) splenectomy (procedure type) laparoscopic ( %) laparoscopic converted to open ( %) hospital stay (median days) ( – ) platelet count preoperative (median× ) ( – ) postoperative (median× ) ( – )* *p< . j gastrointest surg ( ) : – clinically silent. insulinomas are the most common type of pet, and a majority are benign. in contrast, approx- imately % of non-insulin-secreting pets are malig- nant. , due to their less aggressive clinical behavior than pdac and resistance to most current chemotherapeu- tic agents, pets are treated aggressively with resectional therapy. however, cytotoxic chemotherapy is given to patients with unresectable pets. therapy is determined by the grade of the tumor. – thus, chemotherapy is the primary goal of treatment for unresectable pet or pdac for as long as the patient can tolerate it. locally advanced or recurrent pancreatic tumors of either histologic type in the head of the gland can involve the splenic vein, smv, or pv. tumors in the body or tail can involve the splenic vein. either can cause venous . . . . . . . . . . . d is e a se -s p e ci fic s u rv iv a l months (from time of diagnosis) pancreatic adenocarcinoma figure disease-specific survival of patients with pdac. median survival was months (range – months). splenic vein tumor portal vein figure representative pancreas-protocol ct scan from a patient with a pdac located in the body/tail who has complete occlusion of the splenic vein and an enlarged spleen. table individual patient's clinical, radiographic, treatment, histopathologic, and survival characteristics patient location histology stage chemo preop plts (× ) postop plts (× ) time to chemo (days) status at last f/u diagnosis to surgery (months) survival from dx (months) survival from surgery (months) h/u pdac cifu/lv+mitoc dod . . . h/u pdac gemzar dod . . h/u pdac gtx dod . . h/u pdac gtx dod . . . h/u pdac gflip awd . . . b/t pdac gflip – awd . . . h/u pdac cifu/lv/mitoc/ persantine dod . . . b/t pdac cifu/lv/mitoc/ persantine dod . . . b/t pet (well-diff.) temodar/xeloda awd . . . h/u pdac gemzar – dod . . . b/t pet (well-diff.) vp /cisplatin dod . . h/u pdac cifu/lv/mitoc – dod . . . b/t pdac gtx awd . . . h/u pdac gtx dod . . . b/t pdac gtx awd . . . h/u head or uncinate tumor, b/t body or tail, dod died of disease, awd alive with disease, cifu continous infusion fu, lv leukovorin, mitoc mitomycin c, gemzar gemcitabine, gflip gemcitabine+ fu+leukovorin+irinotecan+persantine, temodar temozolomide, gtx gemcitobine+taxotere j gastrointest surg ( ) : – occlusion from compression by the tumor mass or thrombosis of the vessel. left-sided portal hypertension, hypersplenism, and thrombocytopenia may result, which limits the patients' ability to tolerate aggressive chemother- apy. in this study, we examined the perioperative morbidity and effectiveness of splenectomy on restoring platelet counts to normal, administration of chemotherapy, and survival in our small series of patients. a similar analysis was performed on patients with hepatitis c, cirrhosis, and portal hypertension. in this series, splenec- tomy reversed the hypersplenism-induced thrombocytope- nia, and patients could resume pegylated interferon therapy. a recent meta-analysis of trials ( , participants) on the effectiveness of -fu- or gemcitabine-based che- motherapy and radiotherapy for inoperable pancreatic cancer found that chemotherapy can significantly improve -year mortality (p< . ) in patients with locally advanced or metastatic pdac and can also significantly decrease morbidity. gemcitabine–platinum combinations significantly reduced -month mortality on subgroup analysis (p< . ) and currently are the standard of care for the disease. unfortunately, a number of factors often limit administration of chemotherapy to patients with pancreatic cancers. these include a poor functional or nutritional status; an unresponsive tumor and thus no clinical benefit to giving the drugs; bone marrow suppres- sion that can result in severe anemia, leucopenia, and thrombocytopenia, or isolated thrombocytopenia. the potential causes of isolated thrombocytopenia include hypersplenism, bone marrow suppression with preferential inhibition of platelet production, or other very rare causes such as gemcitabine-associated thrombotic microangiop- athy, or capecitabine (xeloda)-induced idiopathic throm- bocytopenic purpura. in fact, a major side-effect profile listed on the gemcitabine package insert includes thrombo- cytopenia. thus, patients who are receiving chemotherapy, particularly gemcitabine-based regimens, are at risk of developing thrombocytopenia. with concurrent hypersplen- ism, the risk is even higher, as bone marrow production of platelets is usually be suppressed. hypersplenism may unmask subclinical thrombocytopenia. a recent study to develop a prognostic score that would predict survival after resection for pets, using , patients from the national cancer data base ( – ), found that age, grade, and distant metastases were the most significant predictors. administration of adju- vant chemotherapy was not associated with increased survival. nevertheless, cisplatin and etoposide combination therapy is effective in treating patients with poorly differentiated pets, while streptozocin, doxorubicin, and -fluorouracil is the standard cytotoxic regimen for func- tional pets. in fact, several studies suggest that pets are more responsive to chemotherapy than endocrine tumors in other parts of the gastrointestinal tract, most notably carcinoid tumors. our two patients with pets who underwent splenectomy and aggressive chemotherapy have had excellent survival outcomes. as listed in table , one patient is still alive with disease after months and recently underwent an extensive resection of the primary tumor and multiple liver metastases. the other patient eventually died of disease after a rather long -year course. patients, with either pdac or pet, who are offered splenectomy must demonstrate a good functional status, preferably with thrombocytopenia as the only factor limiting treatment. a complete blood cell count should be obtained preoperatively to exclude cytotoxic chemotherapy-induced bone marrow suppression as the primary cause of thrombo- cytopenia. if other blood elements are also low, particularly the absolute neutrophil count, then the chemotherapy should be considered as the primary cause of thrombocytopenia and splenectomy deferred. in this case, the dose of chemotherapy should be lowered or combination changed; alternatively, one might elect to give drugs that stimulate bone marrow production, such as granulocyte colony-stimulating factor or erythropoietin. if isolated thrombocytopenia is present, with the other elements normal, and there is evidence of hyper- splenism on high-resolution imaging (e.g., portal vein thrombosis or an enlarged spleen), then splenectomy should be pursued. ideally, we prefer that patients have a good response to chemotherapy, as measured by a decrease in tumor size or extent of disease on imaging and tumor markers; although, this was not the case in the present series, as patients underwent splenectomy over a wide time range from the time of diagnosis. ca - is the best serum marker of response for pdac; chromogranin, synaptophysin, pancreatic polypep- tide, or gastrin can be used for pet. patients must not have end-stage disease and severe malnutrition. we require that patients have a preoperative abdominal ct or mri scan, which are usually being done for disease surveillance during treatment. the primary tumor is evaluated to ensure that it is not growing into the splenic hilum or to note additional features (varices, etc.) that will help in planning the procedure. in addition, the abdomen is evaluated for any signs of carcinomatosis and/or ascites. by using these stringent preoperative criteria prior to splenectomy, perioper- ative morbidity and mortality can be minimized, and platelet counts are likely to respond. patients who are not operative candidates can alterna- tively undergo splenic artery embolization or external beam splenic irradiation, as these two treatments can also potentially reverse hypersplenism-induced thrombocytope- nia. embolization should be considered as second-line treatment after splenectomy because it can be associated with significant postoperative pain and splenic abscesses. furthermore, splenic irradiation is rarely performed for j gastrointest surg ( ) : – hypersplenism but can be effective for relief of pain associated with splenomegaly in patients with hematologic disorders. in our experience, as discussed previously, splenectomy is safe and can be performed with minimal morbidity and a short hospital stay. there were no deaths in our series; hospital stay was short (median days), and patients' platelet counts responded rapidly with quick resumption of chemotherapy (median . days). the median follow-up for all survivors was months (range – ) from the time of diagnosis. the patients with pdac had a median survival of months (range – ) with a -year dss of % from the time of diagnosis, and a median survival of . months (range . – . ) from the time of splenectomy. conclusion in conclusion, while the optimal treatments for patients with locally advanced or metastatic pdac or pet are in evolution, we found that our novel strategy of splenectomy for the development of hypersplenism-induced thrombocy- topenia that limited chemotherapy treatment was effective. splenectomy was performed with minimal morbidity, and was associated with a rapid increase in platelet counts and a short time before resuming chemotherapy. in addition, patients with pdac who underwent this novel treatment strategy had significantly improved dss as compared to historical controls. grant support/assistance none open access this article is distributed under the terms of the creative commons attribution noncommercial license which per- mits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. references . modlin im, oberg k, chung dc, jensen rt, de herder ww, thakker rv, caplin m, delle fave g, kaltsas ga, krenning ep, moss sf, nilsson o, rindi g, salazar r, ruszniewski p, sundin a. gastroenteropancreatic neuroendocrine 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pancreatic adenocarcinoma. am j surg. ; : – . . humphreys bd, sharman jp, henderson jm, clark jw, marks pw, rennke hg, zhu ax, magee cc. gemcitabine-associated thrombotic microangiopathy. cancer ; : – . . bilimoria ky, talamonti ms, tomlinson js, stewart ak, winchester dp, ko cy, bentrem dj. prognostic score predicting j gastrointest surg ( ) : – survival after resection of pancreatic neuroendocrine tumors: analysis of patients. ann surg. ; : – . . goldin sb, aston j, wahi mm. sporadically occurring functional pancreatic endocrine tumors: review of recent literature. curr opin oncol. ; : – . . reni m, cereda s, balzano g, passoni p, rognone a, fugazza c, mazza e, zerbi a, di carlo v, villa e. carbohydrate antigen - change during chemotherapy for advanced pancreatic adenocarci- noma. cancer, ; : – . . halfdanarson tr, rubin j, farnell mb, grant cs, petersen gm. pancreatic endocrine neoplasms: epidemiology and prognosis of pancreatic endocrine tumors. endocr relat cancer ; : – . . wang hy, shih sc, lin sc, chang ws, wang te, lin fj, yang fs. partial splenic embolization: -month hematological effects and complications. hepatogastroenterology ; : – . . yoshida h, mamada y, taniai n, tajiri t. partial splenic embolization. hepatol res. ; : – . . jyothirmayi r, coltart s. an audit of the indications for and techniques of palliative splenic radiotherapy in the uk. clin oncol (r coll radiol) ; : – . j gastrointest surg ( ) : – 	impact of splenectomy on thrombocytopenia, chemotherapy, and survival in patients with unresectable pancreatic cancer 	abstract 	abstract 	abstract 	abstract 	abstract 	introduction 	material and methods 	patients 	survival analysis 	statistical analysis 	results 	clinical, radiographic, and histopathologic findings 	treatment and procedure variables 	survival analysis 	discussion 	conclusion 	references << /ascii encodepages false /allowtransparency false /autopositionepsfiles true /autorotatepages /none /binding /left /calgrayprofile (gray gamma . 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/multimediahandling /useobjectsettings /namespace [ (adobe) (creativesuite) ( . ) ] /pdfxoutputintentprofileselector /na /preserveediting false /untaggedcmykhandling /usedocumentprofile /untaggedrgbhandling /usedocumentprofile /usedocumentbleed false >> ] >> setdistillerparams << /hwresolution [ ] /pagesize [ . . ] >> setpagedevice the lonely, isolating, and alienating implications of myalgic encephalomyelitis/chronic fatigue syndrome healthcare review the lonely, isolating, and alienating implications of myalgic encephalomyelitis/chronic fatigue syndrome samir boulazreg ,* and ami rokach faculty of education, university of western ontario, london, on n a k , canada department of psychology, york university, toronto, on m j p , canada; arokach@yorku.ca * correspondence: boulazreg@live.ca received: july ; accepted: october ; published: october ���������� ������� abstract: this article provides a narrative review on myalgic encephalomyelitis/chronic fatigue syndrome (me/cfs) through a psychosocial lens and examines how this impairment affects its sufferers during adolescence and adulthood, as well as how it impacts family caregivers and healthcare professionals’ mental health. since there has been a lack of investigation in the literature, the primary psychosocial stressor that this review focuses on is loneliness. as such, and in an attempt to help establish a theoretical framework regarding how loneliness may impact me/cfs, loneliness is comprehensively reviewed, and its relation to chronic illness is described. we conclude by discussing a variety of coping strategies that may be employed by me/cfs individuals to address their loneliness. future directions and ways with which the literature may investigate loneliness and me/cfs are discussed. keywords: myalgic encephalomyelitis; chronic fatigue syndrome; loneliness; psychosocial . the lonely, isolating, and alienating implications of me/cfs myalgic encephalomyelitis/chronic fatigue syndrome (me/cfs) is a debilitating neurological disorder known to produce a wide range of devastating symptoms best known to include extreme fatigue, pain, and post-exertional discomfort. though it is thought to originate from a genetic predisposition and/or an interaction with a host of environmental factors (e.g., frequent injury), the exact precursors of this disorder are still not well-understood [ ]. researchers have, however, observed some uniformity in attempting to distinguish the properties of this illness; for example, patients with me/cfs have been observed to have a reduced blood perfusion rate in the brain stem [ ]. additionally, abnormality in multiple brain structures that regulate pain has been observed [ ], leading recent research studies to theorize that the me/cfs brain’s homeostatic processes that react to pain are aberrant in nature [ ]. this unusual brain activity, viewed plausibly due to a viral infection that impacts the central nervous system [ ] such as, for example, glandular fever shortly before a diagnosis [ ], has overarching effects that can cause cognitive difficulties, sleep dysfunction, and immune system irregularity, amongst other debilitating outcomes [ ]. from the start, the conceptualization of me/cfs as an illness has been riddled with controversies and dismissiveness from the medical community. initially deemed to be psychosomatic in nature [ ] and as epidemic hysteria [ , ], this mislabeling has persisted to this day, leading researchers to make observation that the medical community continues to harbor “prejudiced opinions that it is not a real illness” [ ] (p. ). one example of this was seen in canada; in , the federal government’s scientific panel rejected a grant application for me/cfs research, implying that “it was not a disease” [ ]. though funding towards biomedical research devoted to researching me/cfs was eventually accepted healthcare , , ; doi: . /healthcare www.mdpi.com/journal/healthcare http://www.mdpi.com/journal/healthcare http://www.mdpi.com https://orcid.org/ - - - http://dx.doi.org/ . /healthcare http://www.mdpi.com/journal/healthcare https://www.mdpi.com/ - / / / ?type=check_update&version= healthcare , , of less than a year ago [ ], this example provides an illustration of the ignorance faced by those living with the illness. consequently, institutes such as the national academies of sciences engineering and medicine presently classify me/cfs as a stigmatized illness [ ]. while the ignorance directed towards this illness may be in large part be due to a holistic lack of scientific understanding surrounding the exact antecedents of this disorder [ ] and the lack of a standardized procedure for determining its presence in patients [ ], me/cfs is known to cause irritation between the brain, the spinal cord, and the musculoskeletal system [ – ]. it is thus why the term myalgia encephalomyelitis was coined as the latin word “myalgia” translates to muscle pain, “encephalo” to brain, and “myel” to spinal cord [ ]. however, this understanding, as well as the incapacitating physical symptoms presented earlier, only tells one side of an me/cfs sufferer’s story. that is, sufferers of this disorder typically also carry with them a myriad of negative non-physical consequences affecting anxiety, depression, and overall well-being [ ]. put another way, an adjustment period filled with many new expected and unexpected vulnerabilities occurs following a diagnosis of me/cfs. additionally, while variability exists in the way this syndrome affects individuals [ ], for the most part, the major non-physical changes that me/cfs patients commonly must endure include learning how to cope with psychosocial impairment related to the family structure, a loss of self, and a reduced social network [ , – ]. as such, this review aims to explore these psychosocial implications as they relate to me/cfs in adolescence and adulthood, as well as to highlight its impact on the caregivers and parents of patients/children with me/cfs. in doing so, a predominant focus on the lonely, alienating, and isolating features of this illness is explored. it is important to note that though some researchers have found themes of loneliness when investigating persons with me/cfs (e.g., [ , – ]), the consequences of loneliness as it pertains exclusively to me/cfs have not been studied. additionally, while some researchers have found themes of loneliness in their research (e.g., [ ]), the authors of these studies were not interested in the variable of loneliness from the outset. given that loneliness has been observed to influence the expression of symptoms in chronic illness (e.g., having the ability to exacerbate symptoms in chronic illnesses—a topic which is later explored in further detail), we wish to attend to this omission in the literature. thus, through a narrative review, this paper attempts to address multiple issues. it first aims to highlight the relevant psychosocial implications of me/cfs; secondly, an overview of what loneliness is, how it relates to chronic illness (and illness in general), and its stigmatized connotations is presented; thirdly, this paper offers suggestions as to how to cope with loneliness stemming from and enhanced by chronic illness. this is done in hopes of constructing a theoretical framework for future research that wishes to bridge the gap in the literature between me/cfs and loneliness. . method in making the assertion that no articles have directly investigated the impact of loneliness and me/cfs, we conducted search queries that looked for me/cfs keywords (i.e., “me/cfs,” “cfs/me,” “chronic fatigue syndrome,” and “myalgic encephalomyelitis”) and paired them with loneliness-related keywords (we used the terms “loneliness,” “lonely,” “isolation,” “isolated,” “alone,” “alienating,” and “alienation” as a possible pair to each of the me/cfs keywords). our search criteria, spanning possible search queries, found no results on apa psycnet, google scholar, and pubmed when requiring that at least one of each keyword be in the title of an article (e.g., a search query through google scholar was typed as the following: “allintitle: me/cfs loneliness”). next, we redid the search queries but, instead of requiring that a loneliness-related keyword be in the title, we changed this criterion to allow these words to appear anywhere in the abstract or in the body of an article. over articles were researched. of this, studies were appropriate for our topics and were thus utilized. these articles mainly consisted of primary studies and textbooks; however, they also included literature reviews, meta-analyses, systematic-analyses, research instruments, and annual reviews. the search criteria were filtered between the years and ; however, a predominant healthcare , , of emphasis was placed on articles within the last years (of the total studies, dated between and ; dated between and ; dated between and ; dated between and , and dated between and ). . results . . psychosocial factors of me/cfs the presence of chronic pain can have devastating effects on one’s psychosocial functioning. in fact, when it comes to chronic pain, some researchers consider the accompanying psychosocial distress to be so severe in magnitude that they advocate for a dual-diagnosis—one that includes a component on pain severity while also emphasizing the debilitating function of one’s social environment [ ]. as skelly and walker [ ] indicated, such a diagnosis would allow for the healthcare field to truly acknowledge “the way pain affects people’s lives, how they adjust to this, and how it affects their behavior” (p. ). for example, depression and anxiety are almost always comorbid in the presence of me/cfs [ , ]—so much so that some researchers postulate that the term “comorbid” does provide an accurate picture. for instance, maes’ [ ] review of the neural pathways affected by me/cfs and depression found that these two conditions do not exist independently of each other; instead, they are manifestations of similar damaged neural pathways. thus, rather than using the term “comorbid,” maes [ ] advocates for the identification of me/cfs and depression as “co-associated” disorders. this linguistic distinction, though small, may benefit the me/cfs community through earlier mental health intervention, as healthcare professionals would be vigilant of depression from the outset of diagnosis. . . . how me/cfs affects sufferer’s mental health a common reason why mental health issues are high with patients with me/cfs is the frequent observance of kinesiophobia (i.e., a fear of movement, [ , ], which may cause withdrawal and isolation from one’s social circle due to the strenuous efforts of displacing oneself. another common observance in me/cfs individuals, which is devastating in tandem with kinesiophobia, is the act of catastrophizing [ , ]. catastrophizing, defined as the general tendency to assume that the worst-case scenario will happen, presents challenges for the overly cautious me/cfs sufferer. pessimism, a fear of movement, and an intense irrational fear of expecting the worst to occur leads these individuals to isolate in an attempt to protect themselves from potentially negative exposure. however, this approach to confine and stay away from social and recreational pursuits is counterproductive; in fact, studies investigating the implications of social deprivation have shown that it instead increases pain perception [ , ]. thus, kinesiophobia and catastrophizing may create a sort of negative feedback loop where an individual, wishing to mitigate symptoms, stays at home to “protect” themselves, only to have significant distress and an increase in pain. while these issues may universally impact individuals with me/cfs, the age-onset produces additional distinct circumstances that can affect psychosocial well-being in common ways. this is also true for caregivers of family members and patients of me/cfs. as such, we devote the following section to explore further the different variations of me/cfs’ psychosocial impairments and stressors. . . . psychosocial implications of me/cfs during adolescence while likely underestimated due to a lack of understanding and testing for me/cfs, the prevalence of this diagnosis amongst teenagers varies between . and . % [ , ]. youth diagnosed with a chronic illness that damages the central nervous system (as me/cfs has been observed to do [ ]) are % at risk of a psychosocial impairment of some sort [ ]. additionally, compared to non-me/cfs healthcare , , of adolescents, teenagers battling this illness have shown disturbing social and emotional development, higher rates of depression, and a host of other negative implications related to school absenteeism [ ]. regarding school absenteeism, one study that included a sample of adolescents with me/cfs found that % percent of participants had missed a minimum of % of school during the previous six months. such significant absenteeism lends itself to missed opportunities to develop peer relationships and social competence, future work-relevant skills (e.g., resilience and persistence), and academic and language development [ ]. to make matters worse, the time missed from school does not even allow for optimal therapy to be had for these adolescents. for example, a study from the university of bristol [ ] found that only % of adolescents report having access to a specialist, and as much % of students report being disbelieved when disclosing their symptoms to health care professionals and school staff members. prolonged absence from school can also enhance a child’s feelings of isolation due to reductions in networking and participation in sports and other social events [ ]. adolescents are also especially prone to body distortion, and chronic illness can heavily disrupt body image. as vitulano [ ] states, “ . . . bodily changes, and treatment requirements are nagging reminders that they are ‘different and damaged’ in some way” (p. ), further impairing social involvement, acceptance, and self-esteem. it is not surprising then that me/cfs during adolescence is associated with a substantial loss of self. to illustrate, we would like to draw attention to parslow et al.’s [ ] study, one of the first major systematic reviews and meta-ethnographies of the me/cfs qualitative literature during adolescence. their findings indicated (after translating and coding studies and participants’ quotes on feelings of the syndrome) that the disruption and loss of self, alongside pain and social disturbances, was the most frequently emergent construct in the investigations reviewed. to further illustrate this, adolescents with me/cfs were found to place their identities on their bodies; upon learning that their newfangled bodies limited their ability to behave as they used to, self-esteem and confidence, along with a loss of self, were negatively affected [ ]. a loss in self may also be in part explained by the results of winger et al.’s [ ] qualitative study that found adolescents with me/cfs attach significance to attending school and hang-outs with friends. when deprived of these events, the adolescent questions the meaning of life. results from this study also found overwhelming feelings of loneliness and feelings of “sadness and guilt related to being a burden on one’s family” [ ] (p. ). lastly, sibling rivalry was also observed to be an issue for adolescents with me/cfs. more specifically, enviousness and abandonment are felt when siblings of me/cfs sufferers go outside the home and live the otherwise “normal” adolescent experiences. wiliams-wilson’s [ ] wrote about the effects of the illness, as experienced by lisa, one of the participants: “lisa believes that her having cfs has had a detrimental effect on her relationship with her sister; they argue frequently and are jealous of each other, they do not spend a lot of time together as her sister is either at school or the stables. lisa mentions that she and her sister are jealous of each other, which is a point raised by other participants in the study” [ ] (p. ). . . . psychosocial implications of me/cfs during adulthood chronic illnesses, in general, significantly affect one’s psyche. as kiliçkaya and karakaş [ ] stated, “it is known that medical and psychosocial problems in chronic diseases cause negative emotions such as anger, distress, and unhappiness and that patients who have chronic illness feel loneliness. hospital stays, taking medication, physical and social loss of function, economic setbacks, a changing body, and uneasiness in social relationships are factors that affect loneliness” (p. ). according to the world health organization’s investigation in centers across the americas, europe, asia, and africa, chronic and persistent pain affects % of the population globally [ , ]. of the affected population dealing with severe chronic illnesses such as me/cfs, independence and autonomy are greatly impacted causing individuals, well into adulthood, to have an increased dependence on older siblings, parents, and/or caregivers for everyday functioning [ , ]. subsequently, healthcare , , of many adult sufferers are left with many unpleasant uncertainties when envisioning the future. for instance, patient testimonials reveal that a common concern for these adults includes fears of starting a family [ ] (p. ), which may develop into severe psychological trauma. economic setbacks and financial strain are further distressing side-effects for adults with me/cfs. many sufferers of the disorder are left too debilitated to travel to their office or work full-time, leaving them to seek fewer demanding jobs (with less pay) as a result [ ]. furthermore, in countries where patients have to pay for their medical bills (e.g., the united states), me/cfs sufferers are expected to pay significant annual expenses related to treatment [ ], leaving some with the illness to constantly worry and ruminate over how to clear any financial deficits. thus, it is no wonder why a large body of literature reflects on the overall quality of life being significantly impacted as a result of me/cfs [ ]. this well-being is also affected by the disruptions caused to the overall routine of the me/cfs sufferers. for instance, besides work and social habits, individual habits and the ability to partake in hobbies and recreational activities are also greatly impaired. to illustrate, schweitzer et al. [ ] found through a sample of me/cfs patients that % of respondents reported reduced recreational activities and % were forced to discontinue all physically active pastimes. . . . caring for someone with me/cfs due to the disabling nature of me/cfs, there is often a need to heavily rely on someone to look after and help individuals dealing with this disorder [ ]. the duties of caregivers and caretakers are often numerous in scope; as [ ] girgis et al. describe it, caring for people with a chronic illness includes, but is not limited to, assistance with “mobility, transportation, communication, housework, management and coordination of medical care, . . . emotional support, assisting with personal care, organizing appointments, social services, assistance with social activities, . . . and managing finances” (p. ). as a result, and independent of whether this role is fulfilled primarily by a loved one or by a health care professional, looking after and caring for individuals with me/cfs can also produce significant psychosocial maladjustment for the caregivers/caretakers themselves. one study that focused on tracking family caregivers found that, on average, caregivers spend hours per day assisting family members with me/cfs, and this profoundly affected sleep, work and study time, leisure time, and mood [ ]. furthermore, this same study found that % of family caregivers described feeling depressed as the main stressor endured as a result of looking after someone with me/cfs [ ]. this emotional toll can also be expressed in different ways. for example, catchpole and garip [ ] found that parents often face skepticism and disbelief by their social circles (i.e., individuals outside the immediate family, such as friends and colleagues), causing them to withdraw from these networks and experience increased isolation as a result. this behavior was rationalized to be a common coping mechanism for caregivers as their isolation effectively shielded them from the possibility of this type of criticism. additionally, both parental caregivers and professional caretakers reportedly endured significant mental health problems as a result of caring for me/cfs suffers, and, even worse, this mental health burden was also related to a reduced ability to effectively care for the persons with me/cfs [ , ]. parents also experience role ambiguity when tending to children with me/cfs, as the illness is said to create some confusion on how to approach the parent-child dynamic, which can lead to a strained relationship. this was reasoned to be due to the illness creating reduced opportunities to enjoy shared activities that otherwise promote bonding experiences and allow the parent and child to relate to each other [ ]. another example of this occurs when the amount of missed school starts to accumulate—since parents often homeschool their children in these instances and assume the role of teacher, the parent-child relationship may be affected due to the frustrations inherent in coursework and homeschooling [ ]. related to household tensions, missen et al. [ ], tracking mothers of children with me/cfs, also found marital tensions and problems within the marriage related to the disorder as the theme healthcare , , of that was the “broadest and most widely discussed” (p. ). perhaps contributing to marital tensions, feelings of grief are also felt in me/cfs households. put powerfully, and somewhat pessimistically, parental caregivers “mourned the perceived loss of their child’s future” [ ] (p. ). another source of stress related to a child’s diagnosis with me/cfs that we previously briefly alluded to, and is otherwise under-discussed in the literature, is sibling rivalry. earlier, we explained this from the point of view of the adolescent sufferers. however, the siblings of sufferers also experience significant angst as a result of a diagnosis of me/cfs in the household, and parents have been said to often ruminate about the impact this has on the siblings of the child sufferer [ ]. for example, as one parent testimonial revealed in missen et al.’s [ ] study, “the main thing i worry about is [little sister] because she can’t now do the things that [child with me/cfs] used to go out and do . . . unless i leave [child with me/cfs] at home. so, i feel guilt about leaving [child with me/cfs] and going out having a good time with [little sister]” (pp. – ). additionally, the siblings themselves experience a wide range of stressors. houtzager et al. [ ] observed that the siblings of chronically ill children sometimes display even more emotional and behavioral turbulence than parents do during the initial adjustment period (i.e., when a chronic illness diagnosis is first given), as they find themselves having to rapidly cope with losses of attention and companionship from both the parents and the affected sibling. in some situations, parents, after making sacrifices (e.g., reducing work hours and time spent with friends) can also develop forms of anxiety as a result of long-term homebound treatment administered to their child with me/cfs. for example, williams-wilson [ ] recounted, “one woman told me, outside of an interview, that she had been confined to home for such a long time that she actually felt slightly panicky on the rare occasions she visited a public place such as a supermarket, feeling overwhelmed by the number of people and amount of noise, she described it as having become institutionalised.” (pp. – ). . . loneliness while the aforementioned psychosocial factors are numerous and greatly distressing, another equally troubling psychosocial impairment that individuals with me/cfs must deal with exists—loneliness. having so far provided a brief introduction to the ways in which this disorder may manifest itself detrimentally, we now do the same with loneliness by providing a brief background as to what it is, how it is expressed, and the stigma which is associated with it, before finally providing information on how it can affect chronic illness. loneliness, unlike solitude, which will soon be described, involves excruciating physical and mental suffering. interestingly, we can find that the first thing that the biblical god named was loneliness, which is found to be associated with numerous somatic, psychosomatic, and emotional phenomena. loneliness can be a reactive experience, that is aroused in response to a significant life change or loss, or it could be an essential experience which stems from one’s infancy and is intertwined in the individual’s personality [ ]. apparently, it was found that loneliness may have a significant or even profound impact on the brain and can affect reasoning, memory, hormone homeostasis, blood glucose levels, and one’s manner of addressing of physical and mental stresses and illnesses [ ]. while various theories regarding loneliness have been advanced, several characteristics are unmistakably part of that experience: while in solitude, we choose to be alone in order to do what can be done only alone, e.g., reflecting, creating, sculpting, writing, taking a walk in the woods, or communing with nature. loneliness, in contrast, is painful, unwanted, and difficult to tolerate. it thus motivates humans to seek meaning and connection. if we explore it from an evolutionary perspective, we can notice the manner in which animals survive and thrive. they can do so only when they are part of the herd, for the deer who lags behind will become lunch for the waiting lions. thus, like physical pain, loneliness has an important survival function even though it is unpleasant (see also [ ]). loneliness is an integral part of being human and is experienced in order to encourage us to connect and remain part of the community. loneliness is an experience that includes cognitions, healthcare , , of emotions, and behaviors that are mostly negative, turbulent, and unpleasant [ , ]. loneliness is a universal experience; as a uniquely subjective experience, it results from a combination of the individual’s personality, social changes, and one’s history. that history includes, of course, the various experiences and illnesses with which one may have been afflicted [ ]. we do not just require others for our survival and growth; we also particularly need the presence of those who support us, whom we trust, and with whom we can interact, work together, and prosper [ ]. thus, the mere physical presence of others is insufficient. as humans, we need to feel connected to significant others. in general, the prevailing view is that being alone and perceiving oneself as unloved and uncared for will result in loneliness [ ]. research is heightening our awareness that in the western hemisphere, today’s fast-paced and constantly changing world where virtual reality can be seen as being on the brink of replacing the real one, people have little time and no energy to invest the effort required for establishing a connection with anyone beyond the narrow frame of their own hurried lives, living in and conforming to a culture that rewards nothing but the individual acquisition of power and money [ ]. cacioppo et al. [ ] observed that “people are increasingly connected digitally, but the prevalence of loneliness (perceived social isolation) also appears to be rising. from a prevalence estimated to be – % in the s . . . loneliness has increased to over % in middle-aged and older adults . . . over the past years, loneliness has also become more widespread overseas” (p. ) and is linked to poor physical and mental health outcomes. at the time of this writing, covid- has affected the entire globe, significantly changing the way we live. dunham [ ] indicated that loneliness could negatively affect the health of the brain as well as the immune system. this has also seemed to have been exacerbated by the confinement and lockdown. for instance, fallon et al. [ ] found through studying a sample of individuals with chronic pain that they reported an increase in their pain perception and severity during the pandemic, which makes reviewing the effects of loneliness on those afflicted with me/cfs even more poignant at this time. . . . the stigma of loneliness most people are reluctant to admit, even to themselves, that they are lonely. though we may geographically alone, feel unimportant, and unloved, people seem ashamed to acknowledge, let alone admit, that they are lonely. that is a consequence of the western culture’s dictate that loneliness is a sign of weakness that should not affect “normal,” “healthy,” and “strong” people [ ]. this denial does not eliminate loneliness; it simply conceals it from the world while we still hurt and feel alienated at times [ ]. the increased use of drugs and alcohol, the purchasing and consumption of pornographic material, the very many calls to distress hotlines, and the rise in the number of suicides were found by research to be a consequence of the pain of loneliness that is not talked about and is not addressed. we can also see the footprints of loneliness in the increased number of divorces and religious fads. there is, clearly, a stigma to being lonely [ ]. . . . loneliness and illness boehm [ ] pointed to the connection of our emotional well-being, our thoughts, emotions, and behaviors to our well-being (see also [ ]): “individuals who are satisfied with their lives and who experience frequent positive emotions—that is, individuals with high levels of subjective well-being . . . —not only feel good but may also have reduced risk for developing coronary heart disease . . . subjective well-being may buffer against the harmful health consequences of stress and exert direct influence on bodily systems or may motivate healthy behavior” (p. ). modern medical science has been obsessed with death, which is a clear “enemy” in medical eyes, and, thus, medical research aims to eradicate the diseases that cause it [ ]. primary-care physicians healthcare , , of consequently focus on the care of the patient and many times are not fully aware of the person who has the disease. illness is stressful and often frightening—even more to those who are physically disabled, immobile, or are close to the end of their journey on earth. illness, in general, is a major stressor in one’s life [ ]. fatigue, pain, or, in severe cases, immobility results in the body being in a continuous state of stress. such a situation leads to hospitalization and may cause a wide range of short-term and long-term negative effects experienced by the patient [ ]. in general, physical suffering and distress plunge the body into a state of continuous stress that may be exacerbated by the patients’ negative psychological states. such negative psychological states compound the patient’s stress and may result in a perception that one’s life is under threat, further suggesting that the illness is an uncontrollable or even unpredictable part of one’s life [ ]. stress, including separation, loss, and feelings of hopelessness are known to compromise the immune system and can reduce the body’s efficacy in fighting illness. health deterioration is, thus, most probable in persons with already compromised immune functioning [ ]. loneliness, which is associated with a wide range of health problems, is linked to heightened morbidity and mortality. a positive correlation was found between social isolation and mortality [ ]; a report in australia by the national heart foundation reported strong evidence that social isolation contributes to coronary heart disease [ ]. loneliness has also been implicated in a lower level of quality of life [ ]. the chronically lonely display negative mood, tend to withdraw socially, lack trust in others, and often are dissatisfied with their relationships [ ]. those with high loneliness tend to have poorer t-lymphocyte responses and show potentially harmful changes in natural killer cell activity [ ]. natural killer cells have a role in some cancers and inflammatory responses that have been observed in vascular disease [ ]. . . . illness conceptualization this section provides a brief overview of how people conceptualize illness as it may clarify our understanding of why loneliness is such an influential experience in the progression of illness. as leventhal et al. [ ] found, the following components relate to illness conceptualization. the disease’s identity and label significantly influence patient behavior. for example, chest pain may be labeled “heartburn” and that will cause a very different behavioral reaction than the one labeled “heart attack.” similarly, when the illness indicates a minor physical problem, we can expect that less emotional arousal will be experienced than if it is of a more serious nature. diagnosis may not always concur with timelines. for instance, people diagnosed with hypertension may view it as acute (although it is a chronic condition), and that has a direct effect on how much they adhere to treatment because it significantly differs from the way they may address chronic illness. after diagnosis, we search for the cause of the problem. the cause may intimate that we need to seek treatment for it and, moreover, may influence the degree of our compliance with instructions given by a healthcare professional. for instance, pain in our leg that resulted from a fall would generate a completely different reaction than if it was found to indicate bone cancer. the consequences of the disease form the next component. for instance, cancer may be viewed as a death sentence and result in the patient feeling hopeless and consequently failing to seek active and lifesaving treatment. the degree of controlling the disease is the final component. if patients perceive that the situation is beyond hope, they may not seek treatment. however, if they believe that the treatment can help or even cure them, they will actively and even aggressively seek to achieve healing. research has also shown that stronger immune systems are positively associated with stronger social support systems [ , ], whereas people who have fewer social ties are more susceptible to illnesses [ ]. those with a solid social support network commonly cope better with stress and chronic pain [ ], have better health, and have lower rates of mortality [ ]. the nature of people’s connection healthcare , , of to the community, and their perceptions of those relationships, significantly affect their physical and mental health [ ]. what is even more staggering is that social isolation and loneliness rivaled cigarette smoking, high blood pressure, obesity, and a sedentary lifestyle as related to illnesses. research has found a positive correlation between social support and health. conversely, the opposite is also true. that is, those with the fewest social ties are up to four times more likely to die from illness and disease than those who had a good support system [ , ]. segrin et al. [ ] suggested that the lonely are less prone to behave in a health-promoting way, partly since they are not supported by others to adhere to a healthier lifestyle, which end up further increasing their chances to suffer from health problems [ ]. stress lowers the efficiency of the immune system, and loneliness can be a major stressor and contribute to ill health [ ]. in sum, social relations seem able to protect us against the ill effects of stress, and those who lack social support end up with a greater allostatic load [ ]. loneliness may not only bring about illness, but it is known to corrupt the recuperative process [ , ]. . . . loneliness, chronic illness and pain chronic pain is quite pervasive and is estimated to affect %, or about million individuals, in the united states [ , ]. morrissey [ ], focusing on the illness and suffering of older adults, highlighted the negative effect chronic pain has on the quality of life of all sufferers and highlighting how this causes a focus in attention on the losses that come as a result of chronic illness or pain. pain also affects our psychological well-being by making us focus on persistent thoughts and irrational beliefs (such as the earlier mentioned kinesiophobia) related to individual reactions to the experience of pain or illness [ , ]. recent research has indicated that expectations, mood, and behavioral factors also affect chronic pain; this by itself can significantly affect a person’s close relationships and social life [ ]. social isolation is also a major issue confronting chronic pain patients (newton et al., [ ]) and, thus, a strong association between chronic illness and pain and loneliness, as well as other emotions, has been found (e.g., [ , ]) kool and geenen [ ] found, by comparing patients with fibromyalgia and rheumatic diseases, that patients with fibromyalgia were lonelier than those afflicted with rheumatoid arthritis. the same was found in a study on those with sickle cell disease [ ]. high levels of social withdrawal and isolation were found in patients with neuropathic pain as they reported much social withdrawal and consequent isolation, and this, naturally, had an effect on both the patients and their spouses [ ]. loneliness was a major risk factor for the development of fatigue and depression in those patients [ ], and social support and involvement have been found to be positively related to coping with pain [ , ]. intrafamilial relationships can be a major source of personal resourcefulness for patients with chronic illnesses or pain. family constellation can significantly impact the trajectory of chronic illness [ ]. research has repeatedly demonstrated a robust directional effect of loneliness on physical health across the lifespan [ ]. chronic illness may cause a loss of friends or family members and may thus intensify the loneliness that the ill person already experiences [ ]. loneliness is reported by patients who are forced to focus on their illness while the rest of the world, their family, and friends continue with their daily living [ ]. “individuals with high versus low chronic interpersonal stress were especially vulnerable to the negative effects of episodes of loneliness, showing greater loneliness-induced increases in cortisol . . . beyond its physiological effects, one day’s increase in loneliness has been associated with increases in the next day’s symptoms, including exhaustion and fatigue, over and above the influence of the prior day’s depressed affect and sleep duration” [ ] (pp. – ). further, wolf and davis [ ] asserted that physical pain and perceived social exclusion (which we term loneliness) activate brain circuits in the central nervous system where there may be a “pain signature” that is interestingly activated by either a physical or social stimuli [ ]. healthcare , , of me/cfs sufferers experience profound fatigue, exhaustion, the loss of muscle power, pain, joint tenderness, and cognitive dysfunction. in addition, these stressful symptoms cause headaches, sore throats, a loss of concentration, and short-term memory loss [ ]. it is quite clear that being riddled with such symptoms for a lengthy period of time would make socializing, interpersonal connection, and remaining connected to others problematic and would most often require a termination of those relationships. everyday activities become burdensome for people with me/cfs. they often lose the ability to keep up with a conversation since they experience extreme trouble focusing on what the other person is saying and, moreover, processing the meaning of the words. me/cfs patients have trouble not only processing information but also retaining it. memory loss, particularly short-term memory loss, is another common cognitive complication of me/cfs. sufferers forget people’s names, and that makes relating to them that much more difficult [ ]. . . coping with me/cfs induced loneliness as biordi [ ] pointed out, social isolation is a major aspect of chronic illness due to its significant impact on the patient and his or her support network. a variety of interventions, from high-touch and no-technology to low-touch and high technology use, have been suggested and tried. here, we review a number of the main ones. . . . the power of empathy bharadvaj [ ] rightfully observed that any chronic disabling condition (and especially me/cfs) can make a person feel challenged, anxious, or even hopeless; all of which are closely related to energy levels and healthy functioning of the immune and neuroendocrine systems. low energy levels may cause the suppression of the immune system and the imbalance of the hormonal pathways. consequently, bharadvaj [ ] observed a strong association between me/cfs and mental health issues. he concluded by suggesting that “perhaps the best support a healthcare provider can offer is empathy and understanding to an individual suffering from me/cfs. from a place of trust and rapport between doctor and patient, communication can begin about diagnostic testing, therapeutic options, and follow-up care. just as important is the individual’s desire and hope in achieving wellness through lifestyle changes, psychological support, natural medicines, and anything else needed for the evolution in their health” (p. ). . . . keeping in contact with the outside world feeling isolated can be a very common problem for people with me/cfs. being socially connected is a basic human need. being ill may not allow one to get together with friends, but, as suggested by campling and sharpe [ ], one can socialize in a different way. for instance, instead of going out, you may wish to invite some friends to your home for a meal you ordered or prepared yourself. when one is struggling with illness, some friends drop away as they cannot cope with that person’s illness. making new social contacts and replacing those friends can address that problem, and leave the patient connected with the outside community. . . . peer counseling whether it is informal in structure or more formal, initiated, and supported by the professional healthcare worker, riegel and carlson [ ] suggested that peer counseling can be quite effective and helpful. for instance, a telephone hotline can be set up at a clinic that helped peers befriend each other and enable them to provide emotional support and active listening over the phone. a peer counselor volunteer may also be able to visit clients at home or in institutions and offer more social contact. peers can also provide a wealth of information on ways to connect with resources such as assisted transportation, volunteers, friendly or financial aid [ ]. this may also take form in the presence of support groups. healthcare , , of . . . support groups a multitude of support and self-help groups exist for people in the general population, as well for those struggling with a debilitating illness. research has indicated that support groups are very effective in meeting patients’ social needs by allowing them to exchange information, offer mutual support, learn of ways to cope with what they are going through, and ease their physical and emotional pain [ , , ]. the internet can direct the person to sites related to the chronic illness that he is battling, and some associations have both national and local support groups according to not only to the patient’s illness but also their locations and ability to be mobile. in addition, there may be me/cfs support groups that are within reach of the patient where someone can get support and share their personalized experience on what it is to live with me/cfs to the differently abled crowd. as we learn now, socializing does not have to happen face to face. pen pals, friends, and telephone contacts can be very uplifting, as can emails, facebook messages, etc. [ ]. brigden et al. [ ] studied how adolescents coped with me/cfs and noted that since the social connection was so important to them, they relied on the internet to connect to others and created a “community” of those suffering from the same illness, easing their isolation. they stated that in general, “the online world was less demanding and more flexible than offline relationships, especially in the context of a disabling and fluctuating illness” (p. ) additionally, one of their participants remarked that “it’s just the support knowing that at any time during the day if i’m having a bad day i can literally go on and i know immediately i’ll have support” (p. ). thus, it is suggested that whoever can gain access to the internet (and not just adolescents) may benefit similarly. some support groups may also be beneficial by offering physical activity. for example, broadbent et al. [ ] studied the use of aquatic exercise classes with me/cfs patients for five weeks, offered in a biweekly manner. besides the aerobic benefits, the results indicated that participants felt reduced social isolation and felt supported by their me/cfs peers and exercise instructors, resulting in a reduction of pain, fatigue, and anxiety levels during post-treatment interviews [ ]. . . . solitude a person’s choice to seek solitude is healthy. when it is chosen voluntarily, solitude is used for reflecting, centering, feeling spiritually connected, and finding inner peace and strength [ ]. solitude allows us to take a respite from everyday stresses, stimuli, and demands, and it also affords a better understanding of who we are, what do we want, and possibly how to get it [ ]. me/cfs sufferers may therefore benefit from a perspective shift on the extra time they have to themselves when being home-bound or otherwise away from their regular duties. emphasizing personal growth may make these long bouts of aloneness more tolerable. . . . a cognitive-behavioral approach to illness campling and sharpe [ ] opined that me/cfs patients who take control of their situation and actively attempt to help themselves are better able to overcome the emotional toll of their illness. on the other hand, those who believe that their symptoms are very severe, are caused by factors outside of themselves, and that they are “helpless” seem to be associated with greater disability. people relate to and are influenced by the people about them. while the research relating to this approach to coping is limited, we know that these social factors influence the degree to which an ill person struggles with me/cfs. campling and sharpe [ ] indicated that pain which me/cfs patients suffer from is made worse by muscle tension and, at times, is even caused by it. consequently, they suggested that learning deep muscle relaxation may help reduce tension and ease the pain. they added that changing the way patients think and adopting a positive outlook will affect not only their mood and behavior but also their physiological state. they observed that “persistently inaccurate thinking can lead to poor coping and to bad effects on emotion, behavior, and bodily state. for instance, if a person constantly worries healthcare , , of that things will go wrong, they will be chronically anxious, tend to avoid doing things, and be in a physiological state of tension and arousal” (p. ). that will, in turn, affect the illness trajectory and their chances to recover. that may also influence them when they contemplate seeking treatment and their choice of preferred intervention, and it may further affect their nervous and immune systems. to wit, we would like to re-emphasize the study by fallon et al., [ ] that was conducted in the midst of the covid- lockdown in the uk (mid-april to early may ), where it was found that people with chronic pain reported self-perceived increases in levels of pain severity compared to the period before lockdown. the lockdown affected them more adversely than it affected the general population. they also reported greater increases in anxiety and depression, increased loneliness, and reduced levels of physical exercise. evidently, the way the mind perceives one’s illness is a key contributor to that individual’s phenomenological experiences. as such, campling and sharpe [ ]) recommend cognitive behavioral therapy (cbt) to examine one’s thoughts, enhance rational thinking, and encourage positive and proactive cognitions which will usher similarly proactive behaviors. “does cbt work for people with me/cfs? [they asked]. yes, it does seem to help. it is not a cure, but research including a number of clinical trials in different centers has shown that about two-thirds of patients who take part in such a program are able to do more and feel better” (p. ). . . . religion research suggests that people rely on religion, spirituality, and faith to cope with illness and loneliness [ ]. a study by han and richardson [ ] identified spirituality as a coping strategy used to lessen loneliness in their sample of homebound elders. religion was also found by rokach [ ] to assist in coping with loneliness in his research of both ill and non-ill samples. being part of a religious community, as well as relying on one’s faith that a higher power is overlooking one’s life and suffering, was shown to ease suffering and help cope with loneliness. . . . spirituality spirituality is known to be a source of strength for many people. as we clarified previously, spirituality and religiosity are not the same. spirituality can be experienced regardless of a person’s religious beliefs. spirituality can promote the client’s feelings of control, self-esteem, meaning, and purpose in life. nurses, with compassionate listening and sharing, when accompanying the ill can teach and enhance spirituality in the patient. among the practices that may enhance spirituality are meditation, reading, yoga, tai chi, pet therapy, journaling, listening to relaxing and pleasant music, and repeating a mantra [ , ]. spirituality achieved through mindfulness and meditation-based practices may also prove beneficial. for example, boellingus et al. [ ] found that mindfulness-based interventions and loving-kindness meditation can produce increases in self-compassion. in turn, self-compassion was seen to correlate to better day-to-day functioning in chronically ill patients. more specifically, its presence decreased pain perception and depression symptoms and increased work and social adjustment [ ]. while spirituality can both mean and be achieved in different ways from individual to individual (e.g., meditation, mindfulness, and acts of gratitude), the main core aiding agent from these acts, besides the ability to relax, is the ensuing feeling of control. as friedberg [ ] stated, “studies on coping in me/cfs and fm have found that a sense of control over symptoms consistently predicts better functioning, regardless of limitations or disabilities.” (p. ) (see [ , ]). . . . health care providers therapeutic use of self in an article directed at healthcare professionals, holley [ ] suggested that nurses can be a major source of social support in their patients’ lives. nurses are commonly perceived as trustworthy, compassionate, and knowledgeable, and they may even serve as confidants in many cases since they healthcare , , of may be proficient in active listening. even if the nurse cannot increase the patient’s social circle, he or she can provide caring, genuineness, and high-quality contact. biordi [ ] highlighted the authentic intimacy a patient and nurse can share and pointed out that their relationship may be a powerful one. validating a patient’s importance as a human being, biordi [ ] suggested, can be as simple as stopping, making eye contact, and gently squeezing his or her hand. as a way of summarizing the literature discussed thus far, figure provides a graphical recapitulation of the way me/cfs and loneliness may interact through the different coping mechanisms and through the previously mentioned exacerbating effects. healthcare , , of figure . the interaction between me/cfs and loneliness. [ , , , , , , , , – , , , ]. . discussion . . summary to reiterate, chronic illnesses that affect the central nervous system such as me/cfs does produce psychosocial impairment in % of individuals [ ]. though this impairment varies from individual to individual, the age at which sufferers deal with the illness dictates broader and commonly reported themes. for example, adolescents plagued with this disorder miss significant amounts of schooling, which impedes social functioning and future career development skills and can lead to a loss of identity, all of which make young me/cfs individuals question the meaning of life. additionally, a family who receives a diagnosis of me/cfs for one of its members may experience disruptions of the family dynamic including sibling jealousies and rivalries, guilt, and, strained parent-child relationships resulting from parents and children needing to step into differing roles when assisting (e.g., a parent taking on the role of teacher when homeschooling or a child taking on the role of a parental figure when advising recommendations on what not to do). me/cfs suffers who are single with no guardians and no dependents also have their own shares of concerns that they must deal with. this includes rumination and stress related to the financial impact of the disorder (e.g., the loss of work and the cost of treatment), fear about being unable to live a normal life and start a family, and decreased autonomy and an increase in reliance on a caregiver. furthermore, figure . the interaction between me/cfs and loneliness. [ , , , , , , , , – , , , ]. . discussion . . summary to reiterate, chronic illnesses that affect the central nervous system such as me/cfs does produce psychosocial impairment in % of individuals [ ]. though this impairment varies from individual to individual, the age at which sufferers deal with the illness dictates broader and commonly reported themes. for example, adolescents plagued with this disorder miss significant amounts of schooling, which impedes social functioning and future career development skills and can lead to a loss of identity, all of which make young me/cfs individuals question the meaning of life. additionally, a family who receives a diagnosis of me/cfs for one of its members may experience disruptions of the family dynamic including sibling jealousies and rivalries, guilt, and, strained parent-child relationships resulting from parents and children needing to step into differing roles when assisting (e.g., a parent taking on the role of teacher when homeschooling or a child taking on the role of a parental figure when advising recommendations on what not to do). me/cfs suffers who are single with no guardians and no dependents also have their own shares of concerns that they must deal healthcare , , of with. this includes rumination and stress related to the financial impact of the disorder (e.g., the loss of work and the cost of treatment), fear about being unable to live a normal life and start a family, and decreased autonomy and an increase in reliance on a caregiver. furthermore, the stigmatization of this illness results in dismissiveness and skepticism from peers, from authority figures (e.g., teachers and employers), and sometimes even from family members. concerning loneliness, the main focus of this article, we have provided a brief explanation of what loneliness is, how it may result in distress, unhealthy coping behaviors, and how it relates to chronic illness. in doing so, we have highlighted leventhal et al.’s [ ] study, which showed how one’s conceptualization of illness—e.g., the labeling of the illness and the perception of it, control over how one feels about it, expected consequences, and level of hopefulness—can greatly aid or vastly worsen one’s experience with their illness. several coping strategies that caregivers and sufferers of me/cfs may benefit from were also mentioned, including empathetic behaviors, the attempt to stay in touch with the outside world, peer counseling, support groups, solitude, and the cognitive-behavior approach to how to think about the illness. additionally, we emphasized the important role healthcare professionals can have with their patients and spoke about the power of spirituality and religiousness as a buffer to me/cfs-induced loneliness. . . future directions as we previously mentioned at the beginning of this article, there is a lack of investigation surrounding loneliness and how it affects individuals with me/cfs. as such, we would like to raise some questions that would be of interest and offer insights into conducting research studies with this population. questions that glaringly present themselves are: can adequately managed and prolonged exposure to social support networks mitigate symptoms of pain in me/cfs patients? additionally, would being in a support group amongst other me/cfs individuals offer the same buffers to loneliness non-me/cfs groups? might these effects be observable via online support groups (e.g., zoom, skype, etc.) and would they produce similar outcomes as in-person groups? the length of illness and how it relates to loneliness are also of interest. for example, since me/cfs symptoms are present for a minimum of six months and up to, in some cases, more than two years [ ], a longitudinal study that tracks loneliness and how one perceives their diagnosis of me/cfs (including pain, irritability, feelings of control) would be of great interest and could afford insight on whether or not lesser amounts of loneliness translate to a shorter length of pronounced distress faced by the illness. a specific look at personality traits, such as extraversion and introversion, and questionnaires related to perceptions of joy derived from outings, past job experiences/hobby enjoyment (e.g., quality of life enjoyment and satisfaction questionnaire [ ], the minnesota satisfaction questionnaire [ ], etc.) should also be noted and looked at for further perspectives on illness perception. for example, davey et al. [ ] found that individuals who ranked higher on openness to experience were more accepting of their own inner experiences dealing with chronic illness, resulting in significantly lower pain perception. additionally, while difficult, it would be fruitful to sample a comprehensive sample that includes many different cultures and/or backgrounds. since different cultures are affected and tend to view loneliness differently [ – ], it would be interesting to observe if and how these cultural differences fare with respect to coping with me/cfs. answers to these questions would undoubtedly result in better treatment protocols and healthcare expectations. . conclusions considering that loneliness, its accompanying stigma, and illness conceptualization have a devastating impact in exacerbating chronic illness, we deem the current lack of investigation between loneliness and me/cfs a major omission in the me/cfs literature. in closing, we wish to end this article on a quote from williams-wilson [ ], a researcher who suffers from me/cfs herself and who healthcare , , of investigated the qualitative experiences of adolescents with me/cfs; drawing from one of the emergent themes of her study, and her personal experiences, she remarked, “finding other people in the same situation as you, with the same struggles and daily trials makes one feel less alone and different from the rest of the world; it provides a sense of affinity and justification and helps alleviate feelings of isolation and loneliness.” (p. ). it is thus a healthcare imperative that we take the necessary steps to study and demystify the illness’ alienating and isolating aspects so that those suffering with me/cfs can feel empowered and compassion from the medical community when dealing with the disorder. future research may explore the assistance that others, family members, friends, and the community at large can offer those who are struggling with me/cfs loneliness-related stress and emotional pain. author contributions: conceptualization, a.r. and s.b.; methodology, s.b. and a.r.; investigation a.r. and s.b.; resources, s.b. and a.r.; data curation, s.b. and a.r.; writing—original draft preparation, a.r. and s.b.; writing—review and editing, s.b. and a.r.; all authors have read and agreed to the published version of the manuscript. funding: this research received no external funding. conflicts of interest: the authors declare no conflict of interest. references . nacul, l.; o’boyle, s.; palla, l.; nacul, f.e.; mudie, k.; kingdon, c.c.; cliff, j.m.; clark, t.g.; dockrell, h.m.; lacerda, e.m. how myalgic encephalomyelitis/chronic fatigue syndrome (me/cfs) progresses: the natural history of me/cfs. front. neurol. , , . 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. /s - - - http://dx.doi.org/ . /esj- - http://dx.doi.org/ . / - x. . . http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	the lonely, isolating, and alienating implications of me/cfs 	method 	results 	psychosocial factors of me/cfs 	how me/cfs affects sufferer’s mental health 	psychosocial implications of me/cfs during adolescence 	psychosocial implications of me/cfs during adulthood 	caring for someone with me/cfs 	loneliness 	the stigma of loneliness 	loneliness and illness 	illness conceptualization 	loneliness, chronic illness and pain 	coping with me/cfs induced loneliness 	the power of empathy 	keeping in contact with the outside world 	peer counseling 	support groups 	solitude 	a cognitive-behavioral approach to illness 	religion 	spirituality 	health care providers therapeutic use of self 	discussion 	summary 	future directions 	conclusions 	references [pdf] animal‐facilitated therapy in various patient populations: systematic literature review | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /hnp. b e e corpus id: animal‐facilitated therapy in various patient populations: systematic literature review @article{matuszek animalfacilitatedti, title={animal‐facilitated therapy in various patient populations: systematic literature review}, author={sarah matuszek}, journal={holistic nursing practice}, year={ }, volume={ }, pages={ – } } 	sarah matuszek 	published 	medicine 	holistic nursing practice with a soaring trend of the incorporation of complementary therapies into the mainstream of health care, animal-facilitated therapy has become a popular interest for the health care team to integrate into a patient's plan of care. this systematic literature summarizes the current research on the use of animal therapy in several patient populations and provides nursing implications for practice.  view on wolters kluwer saddlesforsoldiers.org save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations results citations view all topics from this paper 	patients citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency chapter – increasing the effectiveness of palliative care through integrative modalities: conceptualizing the roles of animal companions and animal-assisted interventions 	p. skeath, molly a. jenkins, amy mccullough, a. fine, a. berger 	medicine 	 	 save alert research feed pediatric oncology and animal-assisted interventions: a systematic review 	c. cotoc, r. an, hillary klonoff-cohen 	medicine 	holistic nursing practice 	 	 save alert research feed animal‐facilitated therapy 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best medicine: personal pets and therapy animals in the hospital setting. 	denise barchas, m. melaragni, h. abrahim, eric barchas 	medicine 	critical care nursing clinics of north america 	 save alert research feed dog-assisted therapy for residents of long-term care facilities: an evidence-based review with implications for occupational therapy 	joseph cipriani, m. cooper, nicole m. digiovanni, alexandria litchkofski, a. nichols, ashleigh ramsey 	medicine 	 	 	view excerpts, cites background save alert research feed introduction to therapy dogs 	d. marcus 	medicine 	 save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency an exploration of the potential benefits of pet-facilitated therapy. 	s. brodie, f. biley 	medicine 	journal of clinical nursing 	 	 	pdf save alert research feed dog visitation therapy in dementia care: a literature review. 	e. williams, r. jenkins 	medicine 	nursing older people 	 	 save alert research 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brodie, f. biley, michael shewring 	medicine 	journal of clinical nursing 	 	 	pdf save alert research feed animal-assisted therapy and nutrition in alzheimer’s disease 	n. edwards, a. beck 	medicine 	western journal of nursing research 	 	 	pdf 	view excerpts, references background save alert research feed animal-assisted activity among patients with cancer: effects on mood, fatigue, self-perceived health, and sense of coherence. 	r. johnson, r. meadows, jennifer s. haubner, kathleen sevedge 	medicine 	oncology nursing forum 	 	 	pdf 	view excerpt, references background save alert research feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue prognostic value of standardized uptake ratio in patients with trimodality treatment of locally advanced esophageal carcinoma prognostic value of standardized uptake ratio in patients with trimodality treatment of locally advanced esophageal carcinoma rebecca bütof* – , frank hofheinz* , klaus zöphel , , julia schmollack , christina jentsch – , sebastian zschaeck , , jörg kotzerke , , , jörg van den hoff , , and michael baumann – , – department of radiotherapy and radiation oncology, faculty of medicine and university hospital carl gustav carus, technische universität dresden, dresden, germany; oncoray–national center for radiation research in oncology, dresden, germany; national center for tumor diseases (nct), partner site dresden, dresden, germany; pet center, helmholtz-zentrum dresden- rossendorf, institute of radiopharmaceutical cancer research, dresden, germany; department of nuclear medicine, university hospital carl gustav carus, technische universität dresden, dresden, germany; german cancer consortium (dktk), partner site dresden, dresden, germany; german cancer research center (dkfz), heidelberg, germany; and helmholtz-zentrum dresden- rossendorf, institute of radiooncology–oncoray, dresden, germany the prognosis of patients with esophageal carcinoma remains dismal despite ongoing efforts to improve treatment options. for locally advanced tumors, several randomized trials have shown the benefit of neoadjuvant chemoradiation followed by surgery com- pared with surgery alone. the aim of this exploratory study was to evaluate the prognostic value of different baseline pet parameters and their potentially additional prognostic impact at the end of neoadjuvant radiochemotherapy. furthermore, the standardized uptake ratio (sur) as a new parameter for quantification of tumor metabolism was compared with the conventional pet parameters metabolically active tumor volume (mtv), total lesion glycolysis (tlg), and suv, taking into account known basic parameters. methods: f- fdg pet/ct was performed on consecutive patients ( ± y old, men) with newly diagnosed esophageal cancer before and during the last week of neoadjuvant radiochemotherapy. mtv of the primary tumor was delineated with an adaptive threshold method. the blood suv was determined by manually delineating the aorta in the low-dose ct scan. surs were computed as the scan time– corrected ratio of tumor suvmax and mean blood suv. univariate cox regression and kaplan–meier analysis with respect to locore- gional control (lrc), freedom from distant metastases (ffdm), and overall survival (os) was performed. additionally, the independence of pet parameters from standard clinical factors was analyzed with multivariate cox regression. results: in multivariate analysis, parameters showed a significant correlation with all endpoints: restaging mtv and restaging sur. furthermore, restaging tlg was prognostic for lrc and ffdm. for all endpoints, the largest effect size was found for restaging sur. the only basic factors remaining significant in multivariate analyses were histology for os and ffdm and age for lrc. conclusion: pet provides independent prognostic information for os, lrc, and ffdm in addition to stan- dard clinical parameters in this patient cohort. our results suggest that the prognostic value of tracer uptake can be improved when characterized by sur rather than by suv. overall, our investigation revealed a higher prognostic value for restaging parameters than for baseline pet; therapy adjustments would still be possible at that time. further investigations are required to confirm these hypothesis- generating results. key words: fdg pet; suv; sur; mtv; prognostic value; esophageal cancer j nucl med ; : – doi: . /jnumed. . the prognosis for patients with esophageal carcinoma remains poor despite ongoing efforts to improve treatment options. in early- stage disease, surgical resection is the mainstay of therapy. for locally advanced esophageal carcinoma, randomized trials have shown the benefit of neoadjuvant radiochemotherapy followed by surgery, compared with surgery alone ( , ). although this improvement is clinically highly important, the magnitude of the effect of neoadjuvant treatment has been modest, suggesting heterogeneity of response in individual patients. therapy outcome prediction based on basic clinical parameters alone is not convincing in individual patients with esophageal carcinoma. one potential route for predictive improvement is to combine optimized quantitative assessment of the additional functional information provided by f-fdg pet with proven basic parameters ( ). the most frequently used pet parameter for prognostic investi- gations is the suv. some studies have shown that pretherapeutic suv has the potential to provide prognostic information in addition to other parameters (e.g., histology, grading, t- and n-stage, and age) in patients with esophageal carcinoma treated with neoadjuvant radiochemotherapy followed by surgery ( ). in contrast, other studies have been published showing only a trend for significance of suv or even no prognostic impact on overall survival (os) or other clinical endpoints ( ). one possible explanation for the unsatisfactory performance of suv so far might be the adverse effects of well-known shortcomings of suv quantification, espe- cially in the clinical setting. the scan time dependence of this parameter, interstudy variability of the arterial input function, and susceptibility to errors in scanner calibration ( – ) confound the received jan. , ; revision accepted jun. , . for correspondence or reprints contact: rebecca bütof, department of radiation oncology university hospital carl gustav carus, fetscherstraße , dresden, germany. e-mail: rebecca.buetof@uniklinikum-dresden.de *contributed equally to this work. published online aug. , . copyright © by the society of nuclear medicine and molecular imaging. the journal of nuclear medicine • vol. • no. • february mailto:rebecca.buetof@uniklinikum-dresden.de reliability of the suv as a surrogate of the metabolic uptake rate km of the tumor’s f-fdg accumulation (and thus its glucose consumption). therefore, the tumor-to-blood standardized uptake ratio (sur) has been investigated as a new, promising parameter during the last few years. this ratio of tumor suv to blood suv has been shown to correlate better with km (derived via patlak analysis of dynamic pet scans) than does suv alone ( ). in addi- tion, a reliable correction of sur for the variability of the uptake time is possible by converting the measured uptake values to a preselected fixed scanning time point ( ). this scan-time–normalized sur removes several of the shortcomings of suv, decreased test–retest variability ( ), and provided independent prognostic informa- tion in patients with esophageal carcinoma treated with definitive radiochemotherapy ( ). hence, various questions arise for patients with esophageal carcinoma undergoing trimodality treatment. for example, what is the prognostic value of the different baseline pet parameters, particularly metabolically active tumor volume (mtv), which is theoretically the most important radiobiological parameter (also considering the difficulties of ct-based delineation in the case of esophageal carcinoma)? furthermore, what additional prognostic value is to be expected of these parameters at the end of neoadjuvant radiochemotherapy? at that point, changes in therapeutic concepts are still possible, such as avoiding a highly risky surgery in a patient with a poor prognosis, which would have significant clinical consequences. therefore, all baseline pet parameters, restaging measurements, and fractional differences were investigated in the present study. a further aim of this exploratory study was to evaluate the prog- nostic value of sur as a new parameter for quantification of tumor metabolism in comparison to the conventional pet parameters mtv, total lesion glycolysis (tlg), and suv. finally, the determination of specific scores and their prognostic value for therapy outcome in patients with esophageal carcinoma receiving neoadjuvant radioche- motherapy followed by surgery was investigated. materials and methods patient characteristics in total, patients with esophageal carcinoma underwent f- fdg pet/ct imaging for staging from october to december at our institution. among them, patients were treated with palliative intent because of distant metastases or a synchronous second cancer diagnosed by pet; received curative, definitive radioche- motherapy; and had primary resection without other therapy. the remaining consecutive patients with f-fdg pet/ct–staged esophageal carcinoma who received curative neoadjuvant radioche- motherapy were retrospectively analyzed. evaluation of the data was approved by the institutional ethics com- mittee, and before starting treatment, all subjects provided written informed consent to the use of their data for research. inclusion criteria were age greater than y, histologically confirmed esophageal carcinoma, f-fdg pet/ct before and at the end (during the last week) of radiochemotherapy, no distant metastases, curative treat- ment intention, and a minimum follow-up of y. the median age of the patients was y (range, – y), and most were male ( %). table summarizes the patient and tumor characteristics. treatment the patients underwent -dimensional ct-planned conformal radio- therapy, receiving a total dose of gy applied as -gy fractions, with a dose distribution compliant with report of the international commission on radiation units and measurements ( %– %). gross tumor volume was defined as primary tumor and any supect lymph nodes on ct (short axis . cm) or avid on f-fdg pet. the clinical target volume was obtained by expanding this volume using a margin of . cm ( – cm craniocaudally) and, after adjusting for anatomic boundaries, adding the elective lymph node stations. thereafter, the volume was expanded to a planning target volume using institutional margins of – mm. irradiation started concurrently with the first chemotherapy cycle. for all patients, the chemotherapy consisted of -fluorouracil (in- travenous administration of , mg/m over h) and cisplatin (intravenous administration of mg/m on day ) in weeks and of the treatment. seventy-five patients received both chemotherapy cycles; in patient, only cycle was applied. all patients underwent surgery after neoadjuvant radiochemotherapy. in patients, a complete resection was done; in patients, surgery had to be discontinued for various reasons (e.g., aortic infiltration or cardiac arrhythmias). f-fdg pet/ct protocol all patients underwent a hybrid f-fdg pet/ct scan before treatment. a second scan was performed during the last week of radio- chemotherapy. scans ( -dimensional pet acquisition, -min emission per bed position) were performed with a biograph (siemens medical solutions inc.). data acquisition started . . min (range, – min) after injection of – mbq of f-fdg. all patients had fasted for at least h before f-fdg injection. the serum glucose concentration measured table patient and tumor characteristics characteristic value age (y) mean ± sd ± median sex male ( ) female ( ) histology squamous cell carcinoma ( ) adenocarcinoma ( ) t stage t ( ) t ( ) t ( ) tx ( ) n stage n ( ) n ( ) n ( ) uicc stage ii ( ) iii ( ) data are n followed by percentage in parentheses, except for age. sur in trimodal treated esophageal cancer • bütof et al. before injection was . mmol/ml on average (range, . – . mmol/ml). tomographic images were reconstructed using attenuation-weighted ordered-subset expectation maximization ( iterations, subsets, and a gaussian filter of mm in full width at half maximum). pet data analysis region-of-interest (roi) definition and roi analyses was per- formed using rover software, version . . (abx). here, we use roi synonymously for voi to denote a -dimensional volume of interest. the mtv of the primary tumor was delineated in the pet data by an automatic algorithm based on adaptive thresholding considering the local background ( , ). the resulting delineation was inspected visually by an experienced observer masked to patient outcome. le- sions were corrected manually in of cases with low diffuse tracer accumulation. in further cases, the primary tumor was not visible in the second pet scan. in these cases, a small roi (, ml) was manually placed in the esophagus at the location depicted by ct and/or based on information from endoscopy. for the delineated rois, we computed suvmax, mtv, and tlg (tlg mtv · suvmean). the arterial blood suv for computation of surs was determined as described in the supplemental material ( , ) (supplemental ma- terials are available at http://jnm.snmjournals.org). lesion surmax was computed as the uptake time–corrected ratio of lesion suvmax and blood suv (bsuv). uptake time correction to t min after injection was performed as described previously ( ). a value of zero for the apparent volume of distribution was assumed (i.e., vr was used in the correction formula) for the reasons discussed elsewhere ( ). the uptake time–corrected sur is then given by surmax t t · suvmax bsuv ; eq. where t is the actual time of measurement in the respective scan. in the following, we omit the index ‘‘max’’ when denoting suvmax/surmax, because maximum values of these quantities were considered throughout. two suv variants were evaluated, namely normalization of injected dose to whole-body mass and to lean body mass ( ). because the latter variant yielded slightly superior performance (supplemental materials), it was selected for all further statistical analysis and comparison to other parameters. therefore, in the following, ‘‘suv’’ denotes lean body mass–corrected values everywhere. for the pet parameters determined in baseline pet (mtv, tlg, suv, and sur) and in restaging pet (rmtv, rtlg, rsuv, and rsur), their prognostic value of clinical endpoints (described below) was analyzed. additionally, the fractional difference in these parameters between the first and second scans was investigated. for suv, this difference reads dsuv suv suv suv ; eq. where the and refer to the pretherapeutic and restaging pet, respectively. the fractional differences in the other pet parameters were computed accordingly. a summary of all investigated pet parameters is shown in supplemental table . clinical endpoints and statistical analysis the clinical endpoints of this study were locoregional control (lrc), freedom from distant metastases (ffdm), and os measured from the start of radiotherapy to death or event. patients who did not keep follow- up appointments and for whom information on survival or tumor status therefore was unavailable were censored at the date of last follow-up. the association of os, lrc, and ffdm with clinically relevant parameters (age, histology, t-stage, n-stage, and uicc stage) and with quantitative pet parameters was analyzed using univariate cox proportional hazards regression in which the pet parameters were included as binarized parameters. the cutoffs used for binarization were calculated by performing a univariate cox regression for each measured value. the value leading to the hazard ratio (hr) with the highest significance was used as the cutoff. to avoid group sizes that were too small, only values within the interquartile range were con- sidered as potential cutoffs. the cutoffs were separately computed for os, lrc, and ffdm. the stability of optimal cutoffs was tested using the bootstrap method (random resampling with replacement, sam- ples). for each sample, a univariate cox regression was performed in which the same cutoff as in the original data was used to define high- and low-risk groups. mean (sample-averaged) hr and p value were computed. the fractions of samples yielding p values of less than . and less than . , respectively, were determined. considering parame- ters with a mean p value of less than . , the range of cutoffs for which univariate analysis leads to a p value of less than . was determined (supplemental materials). the prognostic independence of pet parameters from clinically relevant parameters was analyzed in multivariate cox regression. those parameters with at least a trend for significance according to bootstrap analysis (p , . ) were included. each pet parameter was analyzed separately together with the respective clinical parameters. the hrs and the p values of the basic parameters were averaged over all analyses. hrs were compared using the bootstrap method ( samples) to determine the statistical distribution of (hr hr ), from which the relevant p value then was derived. the added value offered by using the pet parameters was illustrated by combined kaplan–meier curves. statistical significance was assumed at a p value of less than . . statistical analysis was performed with r, a language and environ- ment for statistical computing, version . . ( ). results the -, -, and -y os rates were %, %, and %, re- spectively. these values are in line with data from the literature ( ). overall, % of patients died during the observation period (last follow-up, january ). the median os was mo. in our study, lrc was % and ffdm was % among the survivors at y. prognostic factors for lrc univariate cox regression with respect to lrc revealed a significant correlation for age, mtv, rmtv, rtlg, Δtlg, rsuv, and rsur (hr range, . – . ), whereas Δmtv, tlg, and Δsur showed a trend for significance (hr range, . – . ). correspond- ing kaplan–meier curves are shown in supplemental figure . only mtv, rmtv, rtlg, rsuv, and rsur passed the stability test (sup- plemental table ). in multivariate analysis, all included parameters were indepen- dent prognostic factors for lrc (hr range, . – . ; table ). the hr of rsur was significantly larger than that of rsuv (p . ). no other hrs differed significantly. the best prognostic score for this endpoint was achieved by combining age, rmtv, and rsur; the corresponding kaplan–meier curves are shown in figure . prognostic factors for ffdm none of the baseline pet parameters was prognostic for ffdm. only mtv showed a trend for significance in univariate cox regression (hr, . ). nevertheless, all restaging parameters and fractional differences were significant prognostic factors for ffdm (hr range, . – . ). corresponding kaplan–meier curves are shown in supplemental figure . mtv did not pass the journal of nuclear medicine • vol. • no. • february http://jnm.snmjournals.org/ the stability test. cutoffs of all significant parameters were stable according to this test (supplemental table ). univariate analyses also revealed a significant prognostic impact of histology. on multivariate analysis, significant effects were found for histology, rmtv, Δmtv, rtlg, rsuv, Δsuv, rsur, and Δsur (hr range, . – . ; supplemental table ). differences in the hrs for rsuv and rsur and for rsuv and rtlg were significant (p . and . , respectively). no other hrs differed signifi- cantly. combined kaplan–meier curves with respect to ffdm are shown in figure . prognostic factors for os according to univariate cox regression, os was significantly associated with the pet parameters mtv, rmtv, tlg, rtlg, rsuv, and rsur (hr range, . – . ). Δsur showed a trend for significance (hr, . ). the corresponding kaplan– meier curves are shown in supplemental figure . the stability test was passed by mtv, rmtv, rtlg, and rsur (supple- mental table ). histology was a significant prognostic factor for os in favor of adenocarcinomas table univariate and multivariate cox regression with respect to lrc univariate multivariate parameter risk hr %ci p bootstrap hr %ci p clinical age , y . . – . . na . . – . . t stage . . . – . . na – – – n stage . . . – . . na – – – tnm stage . . . – . . na – – – histology scc . . – . . na – – – baseline pet mtv . . ml . . – . . . . . – . . tlg . ml . . – . . . – – – suv . . . . – . . – – – – sur . . . . – . . – – – – restaging pet rmtv . . ml . . – . . . . . – . . rtlg . . ml . . – . . . . . – . . rsuv . . . . – . . . . . – . . rsur . . . . – . < . . . . – . < . fractional difference Δmtv .− % . – . . . – – – Δtlg .− . % . . – . . . – – – Δsuv .− . % . . – . . – – – – Δsur .− % . . – . . . – – – ci confidence interval; na not applicable; scc squamous cell carcinoma. in multivariate analyses, each pet parameter was analyzed separately together with age, the only significant clinical parameter in the univariate cox regression. hrs and p values of clinical parameters were averaged over all analyses. bootstrap column shows sample-averaged p value resulting from corresponding bootstrap analysis. only pet parameters with p , . were included in multivariate analysis. figure . prognostic stratification for lrc is shown as combined kaplan–meier curves for age alone (a), combination of age and baseline mtv (b), and combination of age, rmtv, and rsur (c). in combined curves, high risk was defined as simultaneous high risk according to all included risk factors (table shows cutoffs). bottom x-axis depicts time from start of radiotherapy to event or censorship. top x-axis depicts corresponding remaining group sizes. sur in trimodal treated esophageal cancer • bütof et al. (hr, . ). in univariate cox regression, uicc stage also showed a trend for significance (hr, . ). these parameters and the pet parameters were included in the multivariate cox regression. histology, mtv, rmtv, and rsur were multivariate significant prognostic factors for os, and rtlg showed a trend for sig- nificance (supplemental table ). hrs (range, . – . ) did not differ significantly. combined kaplan–meier curves with respect to os are shown in figure . discussion in this exploratory study, we investigated the prognostic value of different baseline pet parameters and their potentially additional value at the end of neoadjuvant radiochemotherapy in patients with esophageal carcinoma. moreover, the aim of this exploratory study was to evaluate the prognostic impact of sur as a new parameter for quantification of tumor metabolism in comparison to the conventional pet parameters mtv, tlg, and suv, taking into account known basic prognostic parameters in this patient cohort. our investigation revealed several pet parameters to be independent prognostic factors for the different clinical endpoints. two parameters showed a significant correlation with all endpoints on multivariate analyses: rmtv and rsur. furthermore, baseline mtv was prognostic for os and lrc, and rtlg was prognostic for lrc and ffdm. the only basic clinical factors remaining significant on multivariate analyses performed together with the pet parameters were histology for os and ffdm, in favor of adenocarcinomas, and age for lrc. our findings on histology are in line with other studies supporting better os rates for an adenocarcinoma subtype of esophageal carcinoma than for squamous cell carcinoma ( ). the fact that neither t- and n-stage nor uicc stage was significantly correlated with the investigated endpoints can prob- ably be explained by the homogeneity of our patient cohort. most of our patients had t and n tumors and therefore represented a comparably narrow range of tumor burden undergoing a homogeneous treatment, making it difficult to identify prognostic factors in the sample reported here. overall, our investigation revealed a higher prognostic value for the restaging pet parameters than for baseline pet for patient outcome after trimodality treatment in esophageal carcinoma. this finding is in line with a retrospective study by mamede et al. in which the highest prognostic value for progression-free survival was found for body-weight–normalized rsuv ( ). this finding also agrees with a study by lomas et al in which body-weight– normalized rsuv was the only remaining prognostic factor for os on multivariate analysis ( ). furthermore, the restaging pet parameters alone have signif- icantly higher prognostic impact than the corresponding relative changes in the respective parameters between the pet examinations. for a prognostic score on patient outcome, the pet-based volume parameter rmtv was combined with the uptake parameter rsur and histology. this score significantly improved outcome prediction for patients with esophageal carci- noma treated with neoadjuvant radiochemotherapy followed by surgery for all investigated clinical endpoints, with the largest effect being for lrc (figs. – ). by determination of such a prognostic score, a therapy adjustment would be feasible since within our protocol the second pet/ct is performed at a time when changes in therapeutic concepts are still possible—for example, avoidance of risky surgery in patients with a poor progno- sis, or intensification of chemotherapy in pa- tient with a high risk for metastatic spread. in our study, baseline suv was not prognostic for any of the investigated endpoints (independent of weight normal- ization; supplemental materials), as agrees with most published investigations in sim- ilar patient groups ( , , ). also, the use of sur instead of suv as the baseline parameter did not improve the prognostic value of uptake parameters in our patient cohort, as agrees with a recent publication by arnett et al. that found no significant figure . prognostic stratification for ffdm is shown as combined kaplan–meier curves for histology alone (a), combination of histology and rmtv (b), and combination of histology and rsur (c). in combined curves, high risk was defined as simultaneous high risk according to all included risk factors (supplemental table shows cutoffs). bottom x-axis depicts time from start of radiotherapy to event or censorship. top x-axis depicts corresponding remaining group sizes. figure . prognostic stratification for os is shown as combined kaplan–meier curves for histology alone (a), combination of histology and baseline mtv (b), and combination of histology, rmtv, and rsur (c). in combined curves, high risk was defined as simultaneous high risk according to all included risk factors (supplemental table shows cutoffs). bottom x-axis depicts time from start of radiotherapy to event or censorship. top x-axis depicts corresponding remaining group sizes. the journal of nuclear medicine • vol. • no. • february correlation between baseline sur and os or histopathologic re- sponse ( ). this suggests that pretherapeutic uptake metabolism per se is not prognostic or has only a low effect in patients with esophageal carcinoma receiving neoadjuvant radiochemotherapy. for Δsuv, we did not find any significant effect on os, as agrees with some studies ( , , – ) but disagrees with others ( , – ). also, the use of Δsur apparently did not improve the cor- relation with our clinical endpoints. only for ffdm—not for os and lrc—we found a significant effect in our study. regarding os, this finding agrees with the results of arnett et al. ( ). taken together, these ambiguous results might indicate a limited prog- nostic value or clinically irrelevant effect of changes in uptake metabolism in this patient cohort. for all endpoints, the largest effect size (hr) of all pet parameters was found for rsur, with the hr difference between rsur and rsuv, respectively, being significant for lrc and ffdm, which further indicates that sur has the potential to increase the prognostic value compared with suv. in contrast, the hrs for rsur and volume-based parameters (mtv, tlg) did not differ significantly. therefore, the question of whether rsur is also superior to these parameters cannot be finally answered on the basis of our results. it is important to note that for each parameter, the optimal cutoff was used for the analysis, resulting in an explorative analysis. the robustness of these cutoffs must be tested in a validation cohort and finally confirmed in a prospective multicenter trial. as to why sur outperforms suv, it is relevant to note that, contrary to suv, sur is (approximately) proportional to the tumors’ f-fdg uptake rate, km, across different investigations, even in the presence of interindividual uptake time and bsuv variability ( , , ). assuming glucose metabolism is prognostic of treatment outcome, sur can be expected to have a higher prognostic value than suv. although uptake time correction of suv is possible ( ), it suffers from specific uncertainties and does not suffice in the present study to improve the performance of suv (supplemental materials). omitting uptake time correction from sur computation (and thus reducing it to suv normaliza- tion to bsuv) is not an option because uptake time correlates with bsuv (bsuv decreases over time). it is only the combined cor- rection which makes sur proportional to km to a rather good approximation. notwithstanding, it is conceivable that part of the improvement achieved by sur will be related not to compen- sation of true intersubject bsuv variability but to elimination of the usual factors adversely affecting suv quantitation (scanner cali- bration, dose, and weight uncertainties, for example). sur shares this advantage with other ratio methods (e.g., the tumor-to-liver ratio) but offers further benefits by eliminating the influence of physiologic bsuv and uptake time variability. in our view, existing data indicate that intersubject bsuv variability is, in fact, much larger than what could be expected from inaccurate or erroneous suv determination alone, but ultimate proof of this conjecture would require comparing image-derived bsuvs with blood samples in a dedicated prospective study. in any case, for practical application of sur, it is not necessary to differentiate between true and spurious bsuv variability because both are simultaneously corrected (ensuring the said proportionality of sur to km). furthermore, our results demonstrate that the correlation of baseline mtv with lrc and os, and of rmtv with all clinical endpoints, is significant. other recent studies also suggest mtv to have prognostic value regarding os and recurrence-free survival, for example ( ). mtv has also been shown to correlate with pathologic response after neoadjuvant chemoradiation as a predictive marker for patient outcome ( ), as is in line with the results reported here. from a radiobiologic point of view, tumor volume as a surrogate of the number of cancer stem cells is highly relevant because the number of cancer stem cells in a tumor correlated with both likelihood of local control and like- lihood of metastases ( ). the results of our study are in line with these expectations. thus, on the basis of this investigation, the importance of tumor volume (or its metabolic active part) to patient outcome can be demonstrated in a further entity and extends previously published data on, for example, lung cancer or head and neck carcinomas ( – ). because mtv and sur are independent prognostic parameters in this study, it may be specu- lated that both the overall number of cancer stem cells and tumor metabolism/proliferation may play a major role in therapy outcome for this patient cohort. it should be noted that in the present study, mtv was determined using an essentially fully automated delineation algorithm. although several viable automated algorithms have been published ( – ), in many institutions mtv is still determined by manual delineation or by application of a fixed absolute or relative threshold, which suffers from well-known limitations such as intra- and interobserver vari- ability as well as a possibly background-dependent bias. therefore, the prognostic value of mtv may potentially be less convincing when the lesions are delineated manually in the usual fashion. in contrast, surmax has the clear advantage of being quite insensitive to the details of tumor delineation (unambiguous determination of lesion suvmax). sur also is quite insensitive to details of the aorta roi definition (used for computation of blood suv), since it can be defined reliably in the attenuation ct scan (sup- plemental fig. ). residual ambiguity or variability of roi position and delineation does not cause notable changes in derived blood suv, because the applied substantial safety margin of mm ensures that partial-volume effects do not become relevant. the analysis of all baseline parameters revealed a combination of age and mtv to have the highest impact for a prognostic score in this patient cohort, but there was hardly any additional value over the prognostic power of the individual parameters alone (figs. – ). if the prognostic value can be confirmed in a validation cohort, the predictive value of the described pet parameters and com- bined scores needs to be addressed in prospective stratification studies or intervention studies. conclusion pet provides independent prognostic information for os, lrc, and ffdm in addition to standard clinical parameters in patients with esophageal carcinoma treated with neoadjuvant radiochemo- therapy followed by surgery. among the investigated uptake-based parameters, suv and sur determined in the restaging pet were independent prognostic factors for all investigated clinical end- points. in all cases, the effect size was larger for sur than for suv. these results suggest that the prognostic value of tracer uptake can be improved when characterized by sur rather than by suv. furthermore, a significant impact of mtv before and after neoadjuvant radiochemotherapy could be shown. thus, the radio- biologic importance of the tumor volume for patient outcome was demonstrated in a further entity and adds to previously published data on other tumors. overall, our investigation revealed the restaging pet parame- ters to be more prognostic than the baseline pet parameters for sur in trimodal treated esophageal cancer • bütof et al. patient outcome after trimodality treatment of esophageal carcinoma. one important fact is that within our protocol, therapy adjustments would still be possible at that point in time. further investigations are required to confirm these hypothesis-generating results. disclosure this work was supported in parts by the german federal ministry of education and research (bmbf contract zik ). no other potential conflict of interest relevant to this article was reported. references . stahl m, walz mk, stuschke m, et al. phase iii comparison of preoperative chemotherapy compared with chemoradiotherapy in patients with locally ad- vanced adenocarcinoma of the esophagogastric junction. j clin oncol. ; : – . . van hagen p, hulshof mc, van lanschot jj, et al. preoperative chemoradiother- apy for esophageal or junctional cancer. n engl j med. ; : – . . baumann m, krause m, overgaard j, et al. radiation oncology in the era of precision medicine. nat rev cancer. ; : – . . omloo jm, van heijl m, hoekstra os, van berge henegouwen mi, van lanschot jj, sloof gw. fdg-pet parameters as prognostic 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erlangen-nuremberg, erlangen, germany accepted: august , elmar gräsel, md, bereich medizinische psychologie und medizinische soziologie klinik für psychiatrie und psychotherapie, universität erlangen-nürnberg schwabachanlage , d– erlangen (germany) tel. + , fax + e-mail elmar.graessel@psych.imed.uni-erlangen.de abc fax + e-mail karger@karger. ch www.karger.com © s. karger ag, basel – / / – $ . / accessible online at: www.karger.com/dem key words non-drug therapies w effectiveness abstract an overview will be presented of music therapy, art ther- apy, movement therapy and reminiscence therapy, memory training, reality orientation, validation therapy, self-maintenance therapy, behaviour therapy, milieu therapy and staff training. the overview will examine the aims of each, the principles on which procedures are based and the proof of their effectiveness. the principal aim of non-drug therapies is to influence symptomatic dementia beneficially and to improve the abilities re- maining to the patient. the potential benefits are usually deduced from studies made without control groups. at the present time, proof of the effectiveness of these ther- apies is still lacking as controlled, randomized studies have yet to be conducted, and so a fundamental evalua- tion of the therapeutic benefits of non-drug therapies in the treatment of dementia cannot yet be made. copyright © s. karger ag, basel introduction primary degenerative dementias, particularly alz- heimer’s disease, are numerically the most often diag- nosed forms of dementia. at present, they cannot really be avoided by preventative measures, nor can they be treated causally [ ]. with the use of nootropics, at the present time, in the case of mild to moderate alzheimer’s disease, it is possible to delay the deterioration of the clin- ical picture (on a cognitive, psychopathological and be- havioural level) for about year, if the patient responds to the therapy [ ]. the effect here is on the symptoms. it is the limited effectiveness of drug therapies which makes the examination of the role of non-drug procedures on dementia symptoms essential. in this overview the most common procedures, their aims, the principles on which they are based and the most significant proof of their effectiveness will be presented briefly – paying special attention to overview studies and meta-analyses. the non-drug therapies used in the treatment of de- mentia form a heterogeneous group. they can be distin- guished from one another on the basis of indication speci- ficity, therapeutic orientation and complexity of the ther- apeutic approach (table ). the therapies have either been developed specially for use in dealing with dementia dement geriatr cogn disord ; : – gräsel/wiltfang/kornhuber table . principles of classification of non-drug therapies for dementia classification principle categories specific unspecific specificity of indications dementia specific procedure with a variety of indication areas – adapted to dementia therapeutic aims direct treatment of dementia-specific symptoms indirect influence on dementia symptoms complexity of the therapeutic approach unimodal procedure multimodal concept or general therapy principle [reminiscence therapy, reality orientation (ro) and self- maintenance therapy) or are adaptations of already exist- ing therapies to the needs and particular circumstances of dementia patients (music therapy, art therapy, movement therapy, memory training and most of the behaviour and milieu therapeutic approaches). the aim of the therapeu- tic procedures is either the direct alleviation of a specific symptom of dementia (or complex of symptoms; e.g. in ro training, by influencing disorientation through the specific exercising of orientation ability; in the case of behaviour therapy, by encouraging continence behaviour through the therapeutic technique of ‘prompted voiding’), or the aim is to exercise an indirect influence (for exam- ple, the diminishment of agitated behaviour through mu- sic, improvement in emotional state through ‘positive reminiscing’). with regard to their form, non-drug thera- pies can be divided into unimodal procedures (music therapy, art therapy, movement therapy, reminiscence therapy and memory training), multimodal concepts (ro, validation, self-maintenance therapy) and general therapy principles (behaviour therapy and milieu therapy). non-drug therapy for dementia unimodal procedures music therapy ‘by the term music therapy we understand the use of music or musical elements for the purposes of healing, where this use is scientifically based or where such a basis is being established. such therapy makes use of patients’ listening to music or of their musical activity’ [ ]. music therapy for dementia [ ] extends from musical improvisa- tion, an element taken from classical music therapy, via the singing of familiar songs, to simply listening to music. musical improvisation is at the most activating end of this spectrum of therapy, and listening is at the least activating end. the aim of music therapy is to compensate for the severe limitations in the dementia patients’ ability to act and to express themselves [ ]. by these means it is intended that, above all else, social and behavioural symptoms will be influenced positively. in their survey of the literature concerning all experimental and non-experi- mental studies on the effectiveness of music therapy for dementia, brotons et al. [ , ] found that this form of intervention was effective in improving social skills (for example, interaction) and emotional state (mood) and effective in diminishing behaviour problems (e.g. agita- tion, wandering). from the meta-analytic point of view, the experimental studies show a significant effect in com- parisons between parameters before treatment and after treatment, although the size of the effect was not consis- tent across all the studies [ ]. it must also be noted that the authors could not find a single controlled study so that the effectiveness could not be reliably assessed [ ]. art therapy art therapy is the scientifically based use of two- dimensional or three-dimensional visual elements which are systematically made experienceable (art contempla- tion) or which under the art therapist’s guidance are created (active artistic creation) with the aim of positively influencing symptoms. in the case of dementia patients, whose cognitive speech skills are increasingly limited, it is especially useful in that art therapy offers patients the opportunity to make decisions in a particular area and by altering the materials offers the feeling of being able to be in control of something [ ]. sensory stimulation [ ] is in the foreground through the elements of line, colour and shape in frames of reference which are two-dimensional (drawing, painting) or three-dimensional (sculpturing, for non-drug therapies for dementia dement geriatr cogn disord ; : – example, with clay). specific difficulties which arise in dealing with dementia patients are described by marr [ ]: low motivation on the part of the patient to try some- thing out; difficulties in applying therapy in cases of apraxis; attention and concentration problems, particu- larly in the case of agitated or apathetic patients; patients mistaking the materials for foodstuffs; problems for pa- tients in recognizing the therapist; depressive reactions where the therapeutic situation is interpreted as overde- manding. on the other hand, art therapy contributes to the reduction of isolation and to an increase in feelings of identity and self-confidence [ ]. special significance at- taches to the encouragement and enabling of artistic activ- ity where a concrete link with the biography of the patient can be found. a particularly telling example of this is the case of the german advertising designer carolus horn who died of alzheimer’s disease in . till the end, horn maintained both his desire and ability to create. he was thus able to shape his life with dementia with more variety and to make his care much easier for his wife [ ]. evidence of effectiveness (positive influence on inner agitation) is based on descriptions of cases (for example, dunker [ ] and kahn-denis [ ]). no controlled studies exist. movement therapy movement therapy can be used in a wide variety of stages of dementia in order to maintain and improve motor functions. in the mild to moderately severe stages it is possible to target balance, mobility, strength and stami- na [ ]. in the case of patients whose dementia is severe and who can no longer walk without help, it is sometimes possible (where the cause is not paralysis) to remobilize the patient [ ]. in the case of patients who are bedridden, it is possible, by means of passive movement of the limbs, to avoid secondary contracture. empirical studies without control groups show that in the case of dementia patients in mild stages it is possible, by means of psychomotor activation, to achieve an improvement in social behav- iour, particularly in the group situation [ ]. the frequen- cy of aggressive behaviour in patients in severe stages of dementia can be reduced by a programme of regularly going for walks [ ]. as is true for art therapy, there are no controlled studies on movement therapy for dementia. there are initial indications that dementia patients benefit more from a combination of movement therapy and music therapy than from music therapy alone [ ]. reminiscence therapy ‘reminiscence maintenance involves contemplation of experiences from a life and sharing these experiences with others’ [ ]. in reminiscence therapy, a person’s memory of the events in his/her life is more or less deliber- ately jogged. the process usually takes place in groups with or without the presence of patients’ relatives. the process is often supported by the use of photographs, mu- sic, film materials or other objects from the patients’ past. the aims of reminiscence therapy are: to promote social interaction to the extent that new relationships may even be formed, to convey positive emotions (joy) and to pro- mote the self-awareness of the dementia patient [ ]. through the esteem shown for existing memories from the long-term memory it is intended that the patients’ sense of identity and their own self-esteem, both of which are endangered by the diminishment of autonomy, will be strengthened. where, in individual cases, painful memo- ries may surface, the supportive influence of the therapist is required. the essential medium of reminiscence thera- py is communication. active listening, attentiveness to non-verbal signals – particularly in the case of dysphasic or aphasic dementia patients – and language appropriate to the dementia are essential elements of working with reminiscence therapy. in their meta-analytical examination, spector et al. [ ] were able to draw on only one single study with a randomized controlled-group design. for the subjects of the experiment, there was no significant difference between the groups on the cognitive and behaviour levels. there is an urgent need for research [ ] since a study of the use of this therapy in several european countries shows that family carers stated that after reminiscence therapy they were better able to deal with the illness [ ]. according to woodrow [ ], reminiscence therapy has the potential to strengthen the empathetic behaviour of professional carers in dealing with dementia patients. memory training it seems only logical to try to influence the cardinal symptom of the dementia syndrome, namely memory impairment, by means of special therapeutic exercises. the results from two controlled studies show, however, that even within a single research group the findings are inconsistent. while the memory function and the mini mental state examination in the memory training group remained at the same level for a year, the performance of the control group deteriorated significantly [ ]. here we are dealing with patients whose eyesight and hearing is sufficiently good, patients whose social behaviour is not dement geriatr cogn disord ; : – gräsel/wiltfang/kornhuber disturbing and who are only mildly demented. in con- trast, a cognitive-competence training programme, also with patients at an early stage of dementia, a programme which, as well as training cognitive abilities (concentra- tion, memory, speech and numeracy) also trained man- agement strategies, did not prevent the deterioration in cognitive performance [ ]. a basic danger in the case of cognitive training lies in demanding too much. furthermore, experiencing one’s own deficiencies often leads to frustration and increased social withdrawal. depressive reactions can, in turn, be the consequence. it is for this reason that cognitive train- ing makes sense only for patients who are in the early stages of dementia and who themselves wish to train their cognitive skills. multimodal therapeutic concepts reality orientation ro is a method of alleviating disorientation with regard to time, place and person, in an in-patient setting. classic ro consists of three elements [ ]. firstly, in small ro groups (with fewer than patients) using exter- nal aids (for example, enlarged calendars) in structured situations (formal ro or ‘classroom’ ro) and on a daily basis, reorientation to day, place and person is trained. the second element, the element at the centre of the ro programme, is the informal, so-called -hour ro. in the course of this, each naturally arising contact between per- sonnel and the dementia patient is also used to give orien- tation information and to support and increase orientated behaviour. the third component of ro is known as ‘atti- tude therapy’. here, in order to support acceptance of the reality offered, and so to support the effect, all partners in interaction must adhere to the same, consistent, basic atti- tude in dealing with the patient (friendly, businesslike, polite, direct but not imperious). a meta-analysis of six studies on the effectiveness of formal ro shows that, compared to randomized control individuals, memory, orientation and orientation-related behaviour improved significantly in the ro groups [ , ]. the authors add by way of qualification that it remains unclear whether the effects persist after the ro has ended. there is reason to doubt that this is the case, since with the progress of the disease the biological basis for continued learning success is lost. the question arises as to whether time orientation, for example, is sufficiently significant for in-patients with dementia that the therapeutic effort is justified for pa- tients who suffer from limitations in the area of activities of daily living (for example, inability to feed themselves independently) which, clinically, are considerably more relevant than disorientation symptoms [ ]. woodrow’s [ ] criticism is that ro makes the patients passive receivers of information and increases feelings of insuffi- ciency. ro’s therapeutic place is where it is used flexibly and sensitively with patients who themselves wish to be orien- tated in reality. validation therapy validation therapy makes use of special verbal and non-verbal communication techniques to establish and maintain contact with elderly, disoriented individuals. in complete contrast to approaches which, in working with dementia patients, aim at orientation to external reality (e.g. ro), this method attempts to offer the dementia patients security in their own emotional state and their own time-place frames of reference by ‘validation’. the principal aim of validation is ‘to help disoriented people be as happy as possible and to reduce anxiety’ [ ]. vali- dation is also intended to offer a developmental theory for very elderly, disoriented individuals. the aims of valida- tion, therefore, include what one might see as a psycho- therapeutic dimension: the reconstruction of feelings of self-esteem, reduction of stress, justification of the life led, dealing with unresolved conflicts from the past, reduction of the use of drugs and physical means of coercion, improvement of verbal and non-verbal communication, prevention of relapse into vegetation, improvement in ambulation and physical well-being. validation techniques are dependent on the stage of the disease. they take into account, above all, changes in verbal communication skills. putting the basic principles of validation into practice includes: picking up on utter- ances without disrupting these (perhaps by reformulation or repetition); addressing the preferred sense organs; eye contact; observation of body language and the expression of emotion; reaction in keeping with the body language of the patient; use of touch, and the employment of elements from music therapy and reminiscence therapy [ ]. the communicative aspect of the validation principle, based on empathy and unconditional esteem, is a plausi- ble concept for dealing with dementia patients. the explanatory basis of validation – that there is always a reason underlying the behaviour of disoriented, elderly individuals, and that validation techniques may reconstitute coping mechanisms from the past by means of which the individual may be able to deal with present non-drug therapies for dementia dement geriatr cogn disord ; : – crises [ ] – has not been empirically proved. here, there are major doubts about the validity of the theory. in their meta-analysis of validation therapy, neal and briggs [ ] were able to draw on two randomized con- trolled studies. on the basis of this small number of cases, no significant differences between the groups emerged. self-maintenance therapy self-maintenance therapy is a multimodal therapy pro- cedure which uses elements of psychotherapy, reminis- cence therapy, milieu therapy and validation therapy to achieve its principal aim. this aim is the maintenance, for as long as possible, of the personal identity and continuity of patients with dementia [ ]. the starting point for the authors was the idea that cognitive impairment, interrup- tions to the continuity of personal experience and lack of new experiences lead to changes and disequilibrium in the self. self-maintenance therapy comprises four components: psychotherapeutic support, the systematic training of self- related knowledge, encouraging activities of daily living and ensuring that communication is validating [ ]. psy- chotherapeutic support consists of helping dementia pa- tients to understand the disease and increasing their feel- ing of self-esteem. training self-related knowledge is done in three stages. firstly, accessible memories which are important for the individual are identified. in the second stage, this material is stored using a computer so that in the third stage it can be employed systematically in accessing positive memories. to counteract the lack of new experiences among the dementia patients, efforts are made to create a stimulating environment which suits the individual’s own predilections. in addition to going for walks, dancing, meeting other people and similar every- day activities, art therapy plays a significant role. the therapists maintain a respectful verbal and non-verbal manner in dealing with the dementia patients, one which validates the patient’s statements. to encourage the long- term effectiveness of self-maintenance therapy, caring rel- atives are involved in the therapy and are trained to con- tinue with the use of these therapy elements at home. from a study of patients, romero and wenz [ ] were able to show that weeks of self-maintenance thera- py significantly alleviated depression and other psycho- pathological symptoms (cumulative value from e.g. affec- tive lability, apathy, agitation, aggression). a valid assess- ment of the therapeutic benefit cannot be made at this time, since no controlled study has yet been conducted. general therapy principles behaviour therapy behaviour therapy is a general term indicating the use in psychotherapy of the knowledge offered by the whole field of experimental psychology [ ]. its aim is the altera- tion of clearly described and well-operationalized behav- iour, cognition and emotions. these modifications are to be achieved essentially by means of operant and classical conditioning as well as by model learning. most thera- peutic approaches use operant methods. here, there is a deliberate influencing of behaviour either by alteration of the situation in advance of the occurrence of the behav- iour (for example, supports such as ‘prompting’) or by means of reaction to the behaviour after it has occurred in the form of consequences experienced as positive (rein- forcement) or consequences experienced as negative (punishment, for example, indirectly via withdrawal of reinforcement). with dementia patients behaviour therapy aims at recovering lost skills or coming to terms with their loss, at reducing disturbing behaviour and at the alleviation of accompanying psychiatric symptoms [ , ]. behaviour therapy programmes in nursing homes attempt to modify challenging behaviour such as agitation or apathy [ ]. the latter manifests itself in deficits particularly in social and communicative skills, deficits which are often more pronounced than is justified by the degree of organic change. challenging behaviour of the overactive kind, such as inappropriate vocalizations (for example, chronic screaming), motor agitation and verbal physical aggres- sion, cause problems not only in in-patient nursing facili- ties. according to ehrhardt and plattner [ ] the advan- tages of behaviour therapy are its broad repertoire of methods, the facility of combination with other psycho- logical therapeutic procedures and the possibility of adapting behaviour therapy methods as the disease pro- gresses. it is not possible here to give more than a couple of examples of the great number of specialized behaviour therapy procedures. the choice of the examples which are given rests upon the availability of controlled studies. one simple procedure is the regular giving of verbal support to incontinent patients in the context of urination (prompted voiding). the differing results from four stud- ies with randomized control groups prompted eustice et al. [ ] to conclude that with prompted voiding there was no assurance that self-controlled bladder emptying was promoted nor that the number of incontinence episodes dement geriatr cogn disord ; : – gräsel/wiltfang/kornhuber was reduced. there was no indication of long-term ef- fects. this points to a basic problem which behaviour thera- py measures have in dealing with dementia. in the case of dementia patients, from a certain point of severity of the disease, the precondition for attaining lasting learning effects – for example, by operant conditioning – is no lon- ger fulfilled, namely a memory which is still functioning sufficiently well. it must be added, however, that after everyday activities have been trained by means of behav- iour therapy (by, for example, support with or without reinforcement) there is a significantly higher level of activity [ ] or a significant reduction in the previously pronounced symptoms of depression [ ] when compared to the control groups. alongside these unimodal procedures there are signifi- cantly more complex forms of therapy, for example the so-called behaviour therapy competence training [ ], which use a broad spectrum of behaviour therapy tech- niques, psycho-education, stress management, activity creation, enhancement of social competence and modifi- cation of counter-productive cognitive patterns. evidence of effectiveness of these concepts is still lacking. in order to employ complex behaviour therapies with some promise of success, not only must there be qualified therapists but also a willingness on the part of the nursing staff to undertake training and to cooperate in the thera- py. for this reason, schnelle et al. [ ] demand that when behaviour therapy is to be implemented in nursing facili- ties, not only should the effectiveness of the method be considered but also matters of efficiency, such as the level of training which would be required for staff, quality con- trol and cost-benefit ratios. milieu therapy ‘milieu therapy describes a particular therapeutic prac- tice based upon the concept of adaptation of the material and social environment to the changes caused by the dis- ease, ...’ [ ]. milieu therapy represents the most compre- hensive field of non-drug therapy options for dealing with dementia. greatly differing procedures – changes to the material environment and to the social environment of the patient (the milieu) – aim at weakening the negative effects of the disease process and to enhance existing skills (resources). concrete examples [ ] of milieu therapy interventions are (the particular aim of the intervention is given in brackets): conspicuous signals, so-called sign- posts (orientation); sensory stimulation (perception); stimulating environment (drive); avoidance of distraction (concentration skills); manageability of the environment (thinking and performing everyday tasks); communica- tion aids (speech). milieu therapy procedures may be divided into three categories, beginning with complex fields of influence (category i) via concrete unimodal procedures (category ii) to special changes in detail (category iii). category i. the shaping of the material environment is now increasingly seen as an important support in caring for dementia patients [ ]. the comparison of a collective living unit with a classic nursing home [ ] is one example of a comparison of global milieu differences. such studies have a descriptive nature. on ethical grounds, studies using randomized control groups would, in the case of global milieu differences, be difficult to justify. category ii. in principle, all procedures presented thus far may be seen as ‘milieu therapies’ in so far as they bring about changes in the material and social environment of the dementia patient. to give an even fuller picture, three other milieu therapy procedures (sensory stimulation, pet therapy and therapeutic touch) which mirror the wide variety of possibilities for change in the milieu ought also to be mentioned. targeted sensory stimulation is employed in order to combat sensory deprivation among hospitalized demen- tia patients. in case studies of elderly male dementia patients ( – years old), spaull et al. [ ] observed that there was increased social interaction after the ‘therapy sessions’ but no change in feelings of well-being. one particular example of the use of sensory stimula- tion is aromatherapy. essential aromatherapy oils are employed in an attempt to improve the nighttime sleep of dementia patients and to reduce disturbing behaviour during the day. in case studies with or patients, an improvement in motivational behaviour [ ] could be identified after the therapy phase, as well as an improve- ment in the average sleep time per week [ ]. the combi- nation of aromatherapy and massage led to a reduction in disturbing behaviour in only of subjects [ ]. with of the patients, the treatment led to an increase in agitated behaviour. the results concerning the effectiveness of aromatherapy are inconclusive [ ], the more so since, in the only randomized study (with patients), aromather- apy was examined only in combination with massage, in comparison to massage, in combination with conversa- tion and in comparison to massage alone [ ]. there is a lack of controlled studies in which aromatherapy has been tested as a monotherapy. therapy with animals (pet therapy) can motivate pa- tients to go for regular walks and can alleviate loneliness. stroking animals can have calming effects [ ]. a study of non-drug therapies for dementia dement geriatr cogn disord ; : – gerontopsychiatric patients (most of whom suffered from depression or dementia) who were divided random- ly between a group with pets and a comparison group, showed that after a -day intervention built principally around contact with dogs there were no changes within the pet group nor significant differences between the two groups with respect to irritability or withdrawn behaviour [ ]. the effects of pet therapy on challenging behaviour in the particular case of dementia patients have yet to be examined. therapeutic touch is employed to achieve relaxation in those dementia patients who do not reject [ ]. this seems to work to reduce stress (tendency for cortisone concentrations to become lower in saliva and urine) and to reduce challenging behaviour such as motor agitation and inappropriate vocalizations, at least for the period of treatment and the phase immediately thereafter [ ]. category iii. examples of special milieu-therapeutic changes in detail are the increase in environmental ‘white noise’ to influence screaming attacks among severely de- mented nursing home residents (a reduction of % [ ]) and the use of subjective barriers such as mirrored doors [ ] or striped floor patterns in front of exit doors [ ] to reduce the danger that dementia patients with motor agi- tation will wander. with these ‘gentle’ methods, without having to build physical obstacles or lock doors, it is possi- ble to halve the frequency of contact with outside doors. it must be said, however, that the studies which show this were not controlled studies, and that the measures did not work with equal effect for all patients (non-responder problem). furthermore, model learning made it possible for dementia patients, too, to overcome the subjective barriers to open the doors. price et al. [ ] were unable to find any controlled study of the effectiveness of subjective barriers when dealing with wandering dementia patients. they found no studies whatsoever relating to the effec- tiveness of such measures in the home. in order to be able to make a valid assessment of the therapeutic value of any milieu therapy procedures, it will be necessary to produce results from elaborately designed studies with a sufficient- ly large number of patients. staff training although staff training can also be seen as a form of milieu therapy (it brings changes in the social environ- ment of the dementia patient), this form of intervention should actually be dealt with in its own section because of its special role – the target for ‘change’ being here primari- ly the staff. most staff members feel that the dementia patients’ disturbed behaviour creates mental strain in the staff [ ]. one consequence of this could be a change in the style of care (for example, behaviour of the staff which is less empathic) which in turn could lead to an increase in dis- turbed behaviour. if this vicious circle does indeed exist, then it must be possible by staff training to improve the behaviour of dementia patients and/or their emotional state. are these assumptions well founded? analyses of the connection between the dimensions of care and patient-related outcome variables indicate that for a large sample of dementia patients ( residents in long-term care institutions in canada) there is a signifi- cant, though not particularly marked, correlation between staff training and the patients’ agitation [ ]. the more training the staff received, the smaller the rise in agitation in the course of a year. no significant correlation was established between staff training and the patients’ physi- cal functioning, expressive language skills, social skills, affect or cognitive functioning. the scores given by chap- pell and reid [ ] to the value of staff training relate to a large variety of different types of training conducted in the care units which were studied, but the question remains as to which kinds of staff training most effective- ly influence the behaviour of the dementia patients, and this question can be answered only by using results from intervention studies. up until now, a wide range of very different staff train- ing programmes has been developed, most of which are aimed principally at improving the level of understanding of and for the limited abilities of the dementia patients, offering possibilities for the augmentation of the abilities which the patient still retains and mediating techniques designed to improve communication. three quasi-experimental studies with a comparison group without staff training delivered the following re- sults: directly after the -month intervention phase, integ- rity-promoting care (measures to create a positive climate for the dementia patients) together with improvements in care led to an increased number of opportunities for the dementia patients to be more active in shaping activities and in making decisions, more cooperation and an in- crease in verbal contact during morning care [ ]. the abilities-focused programme of morning care developed by wells et al. [ ] is made up principally of interventions aimed at maintaining or compensating for social and self- care abilities. three months and also months after the intervention, a significant improvement could be identi- fied in attending and calm behaviour, as well as in overall and social functioning. there was also a significant de- dement geriatr cogn disord ; : – gräsel/wiltfang/kornhuber crease in levels of agitation. in the communication skills programme for nursing assistants, developed by mccal- lion et al. [ ], it was possible after months to identify a significant reduction in verbal agitation and in physically aggressive behaviour, but after further months the effects were clearly less marked. the results from con- trolled studies suggest that the behaviour and condition of dementia patients in long-term facilities can be influenced positively by staff training. although a one-session training programme aimed at improving the staff’s knowledge of dementia, of wander- ing behaviour and of management strategies did lead, after the in-service programme, directly to an improve- ment in the caring personnel’s level of knowledge, this effect was already weakening at the time of the -month follow-up [ ]. future studies will show which elements of staff train- ing programmes are most effective and most efficient. another question which must be answered is how inten- sive the training needs to be, and both how long its effects last and how soon the training needs to be refreshed. discussion given the range and number of different procedures, particularly those employed in following general therapy principles such as behaviour therapy or milieu therapy, this overview cannot be fully comprehensive. the main criterion for choosing those which were examined was the availability in the international databanks (medline®, psychinfo®, cochrane review) of studies on effective- ness. the intention was also to show the diversity of non- drug therapies for dementia. findings from the studies make it possible to assess therapies with regard to aim, criteria for use and effective- ness. aim of non-drug therapies the aim of therapy is to influence positively, above all, the emotional and behavioural changes associated with dementia. symptoms to be dealt with are e.g. agitation, the tendency to wander, disturbance of the day-night rhythm, depression, apathy or aggression. where these symptoms, which are often a great burden on nursing per- sonnel and the patient’s family, can be influenced success- fully, living with the dementia patient is made much easi- er and the burden on the carers is eased. in this context, providing the family carers with social support and coun- selling is of great importance [ ]. a further aim of therapy is that the resources of the patients, that is to say their remaining skills, should be enhanced and their adaptation to a life with cognitive lim- itations and limitations with regard to activities of daily living should be improved. with regard to this, the aim of non-drug therapies is not primarily to employ specialized training to reduce deficiencies which already exist. partic- ularly from the moderately severe stages of the disease onwards, the functional basis for learning with lasting effect no longer exists. criteria for the use of non-drug therapies before deciding to use symptom-based therapies it is advisable to undertake an analysis of challenging behav- iour and of emotional changes. the aim with respect to these is to identify causes or triggers so that treatment can be aimed accurately or indeed be conducted causally. for example, the reason for pronounced agitation in a demen- tia patient could be a painful, as yet undiagnosed gastro- intestinal illness (a gastritis, for example). in such a case, it would be possible, once the gastritis had been diag- nosed, to treat the actual cause of the agitation. depending on the degree of severity of the dementia and upon the individual spectrum of symptoms, the choice of non-drug therapies can take two courses. the measures chosen will either be those which have been developed with the purpose of influencing one particular symptom (for example, prompted voiding in dealing with incontinence, or subjective barriers in the case of wander- ing), or a non-specific procedure will be chosen. the latter will be chosen if no specific non-drug therapy exists (for example, for improving emotional state). in this case, that therapy should be chosen which is practicable in the par- ticular setting and whose effectiveness is best proved for the symptom which is to be influenced. this choice will depend crucially upon availability of specialist personnel and structures such as suitable premises for therapy. the individual patient’s inclinations and disinclinations, and any special skills should be taken into account in making the choice, to ensure that the best possible basis is created for the success of the therapy. a full family case history and a full social case history are, therefore, essential pre- conditions for a targeted planning of therapy. it is also necessary to discover whether the patient personally ful- fills all the preconditions for the successful use of the ther- apy (for example, in the case of pet therapy, freedom from non-drug therapies for dementia dement geriatr cogn disord ; : – allergy to animal hair). finally it has to be proved for each patient separately whether the degree of severity of the dementia syndrome enables the planned therapeutic mea- sure. in any case the effectiveness of the therapy should be tested after a certain length of time, and a decision should be made as to whether it is possible and wise to continue with the therapy or whether a different procedure must be tried. generally, in treating emotional disturbance or chal- lenging behaviour, it seems to make sense to use non-drug treatment options before treatment with drugs [ ] and to test the effectiveness of these non-drug options in individ- ual cases since the risk of possible undesirable effects from the drug therapy (for example, in neuroleptic therapy, extrapyramidal motor symptoms) could thus be avoided. effectiveness of non-drug therapies a variety of individual studies have shown desirable effects across a range of non-drug therapies employed. for the most part, these studies are to be regarded only as observations of the use of the therapies. for most of the procedures, there is, as yet, no evidence of effectiveness which is based on controlled randomized studies with a sufficiently large number of samples. furthermore, there are hardly any findings relating to conditions which may lead to undesirable effects (findings, for example, on the question of whether negative emotional or behavioural symptoms are caused by excessive demands on the pa- tient). in most of the studies, the therapy in question was effective only for so long as the therapy was continued. there has been no study of whether such therapies are effective in the long term. as is the case with drug thera- pies using nootropics, there are ‘non-responders’ who do not respond to non-drug therapies. non-drug procedures in the total therapeutic context in caring for dementia patients, non-drug therapies are used relatively seldom. the primary reason for this is not skepticism regarding the potential effectiveness of such therapies. the main reason in the in-patient setting is the lack of the trained personnel necessary for a non-drug pro- cedure which is both labour intensive and cost intensive. nor are there models for use in the domestic setting, though this is where around % of all dementia patients find themselves. one essential reason for the relatively slow further development of non-drug therapies has been the lack of a ‘lobby’. no commercial interests are tied in with non-drug therapies. in addition, the research funds on offer are meagre since the politics of research are currently all but completely dominated by the belief that effective treat- ment may be expected by biochemical-pharmacological approaches to therapy. required research given the potential benefits of non-drug therapies and the unsatisfactory situation with regard to evidence of effectiveness, there is clearly a considerable need for research. future studies should address the following issues: (a) are symptoms of the dementia syndrome at all influenced by a particular therapy, and, if so, which are the symptoms and what is the extent of the influence? 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geriatr soc ; : – . mccallion p, toseland rw, lacey d, banks s: educating nursing assistants to communicate more effectively with nursing home residents with dementia. gerontologist ; : – . cohen-mansfield j, werner p, culpepper wj, barkley d: evaluation of an in-service training program on dementia and wandering. j geron- tol nurs ; : – . gräsel e: angehörigenberatung bei demenz: bedarf, ausgestaltung, auswirkungen. theorie prax soz arb ; : – . gutzmann h: rationelle therapie; in förstl h (ed): demenzen in theorie und praxis. berlin, springer, , pp – . mapping and assessing urban agriculture in rome agriculture and agricultural science procedia ( ) – - © published by elsevier b.v. this is an open access article under the cc by-nc-nd license (http://creativecommons.org/licenses/by-nc-nd/ . /). peer-review under responsibility of fondazione simone cesaretti doi: . /j.aaspro. . . available online at www.sciencedirect.com sciencedirectsciencedirectsciencedirect florence “sustainability of well-being international forum”. : food for sustainability and not just food, florenceswif mapping and assessing urban agriculture in rome aurora cavalloa*, benedetta di donatoa, davide marinoa a department of bioscience and territory, university of molise, contrada fonte lappone snc, pesche (isernia), italy. abstract the paper focus on the concept of food and agriculture as an infrastructure – which is both spatial and relational - , within the context of the urban mediterranean phenomenon, where, with all its political, cultural, economical, social and environmental differences, there is a common relationship with food and food production in an urban setting. the aim of this paper is to explore the agricultural context of rome, focusing on its relationships with development in the metropolitan area, within the framework of sustainable food planning. starting from the relationship between food and city, we have mapped the foodscape, identifying a number of representative conditions - typologies - in the metropolitan area of rome. through a of criteria - relationships with the urban fabric, production patterns, flows, services, infrastructures, environmental characters, social behaviour linked with the production - the study tries to summarise roman agriculture. we focus on a set of recurring elements, involving both criticalities and opportunities, that bring together city and food production. rome has what we could call a compact structure compared to the dispersed urban model and this has encouraged the development of local agricultural systems, where both flows and landscapes involve the city. while production is organised into wedge-shaped areas, the places where exchanges occur are mainly within the municipal area of rome, with the exception of farms involved in direct sales. despite a strong urbanization pressure caused a reduction of % of the utilised agricultural area (uaa) between and , this trend was reverted back between and , with an increase of the uaa of %. the analysis of land use (clc, ) reveals a system of wedge-shaped agricultural areas, where short supply chain models can be used efficiently to manage and promote the use of land and landscape. in synthesis, in terms of their production systems, there is a high number of short supply chain farms in rome (over %), mostly with mixed production systems linked to multifunctional farming. the role played by the local food network in rome is remarkable, particularly in case of farmers’ market, spg’ and those linked to box schemes experiences have seen significant success. the increasing importance of alternative and local food networks is showed in the data: the % of rome municipalities farms sell directly (istat, ) it was registered an increase of + % farmers’ market at municipality level and of + % in rome’s province ( / ) (marino et al., ). the local food network * corresponding author. e-mail address: auroracavallo@libero.it aurora cavallo et al. / agriculture and agricultural science procedia ( ) – behind agriculture in the city, within a number of integrated social agrarian cooperative, who represented an alternative food production system and landmark for many initiatives carried out by the civil society, associations, cooperatives, volunteer and school sectors, community supported agriculture (csa) initiatives. this account of short supply chains in rome is inevitably the account of an urban phenomenon. it is indeed the city that determines its special characteristics for both physical and relational aspects. the mapped farms are mostly located near the main routes that radiate from the city to the countryside, underlining the centrality of the flow of exchanges that take place with the city. the processes of transformation affecting the primary sector in urban and suburban environments reflect an agriculture that forms (and produces) new landscape and functions, typically reconnected to the historical value of agriculture in and around the mediterranean cities. food, because of its cultural and historical place in mediterranean tradition, has a significant role in configuring the areas where exchanges takes place, which are, therefore, specific places for meeting and forming relationships within the public spaces of a city. the system identified by the paper configures the set of all the different forms of agriculture and food in rome as a device of resilience for the city, made up of places where flows, relationships and processes become increasingly more sustainable, and where both physical and intangible spaces act as an infrastructure in their exchange with the city. © the authors. published by elsevier b.v. peer-review under responsibility of fondazione simone cesaretti. keywords: rome, food planning, urban agriculture. . introduction in recent years, there has been much talk about how the population of cities has overtaken that of rural areas, crossing an unprecedented watershed. indeed, the new “urban era” or “metropolitan era” was announced with some emphasis. the form it takes in rome is archetypical, make it impossible to interpret or understand the urbanisation processes without also looking at the significance of rural-urban relationships (zimmermann, ). referring to the mediterranean geography, braudel stated the cities do not originate from the countryside, but rather it is the countryside that originates from a city that it is barely capable of feeding. “the countryside lived off its harvest and cities off the surplus”, he writes (braudel, ). the territorial dynamics of the mediterranean landscape, even after nearly half a century, are still those described by the author, and indeed it is these settlement models that largely define the forms and processes of the farming and environmental systems to which they belong. however, the modern urban phenomenon in part negates the traditional idea of a city where the countryside has a place outside the “walls”, and whose forms and functions are nearly in conflict with those of the city. through a disorderly process, cities are rewriting the way in which they relate to the territory, a process that must inevitably lead to the invention of different cities. this multi-faceted aspect also emerges in the many forms assumed by the primary sector in the stretches of land nearest to the city, leading to functions relating to space and relationships that vary according to their socio-economical and environmental implications. an analytic effort is required, downstream from the interpretation and characterisation of these relationships, to identify the possible intervention tools that can assess their complexity. rural economy, at least until the late s, was strongly agricultural in nature, to the point that the terms “agricultural” and “rural” could be used indifferently. today, this synonymy is lost, due to the growing diversification of rural economy, although agriculture still retains its role of defining the territory in terms of landscape, traditions and culture. on the other hand, the processes of transformation affecting the primary sector in urban and suburban environments reflect an agriculture that, where it survives the pressure from encroaching urban settlement, forms (and produces) new forms and functions. through diversification, various initiatives and sell on farm experiences, the structure on which production is based tries to satisfy an urban demand that is no longer exclusively that of food, but is also directed towards social and environmental needs, with significant benefits in terms of employment, added value and the role of education and culture. alongside the transformations to the farming environment, further changes also affect, in particular, the “green” urban or metropolitan landscape. new trends emerge in the use of free cultivated spaces - public and/or private land in urban and suburban areas - that acquire a new civic dimension linked to modern-day living (baycan-levent et al., ; © published by elsevier b.v. this is an open access article under the cc by-nc-nd license (http://creativecommons.org/licenses/by-nc-nd/ . /). peer-review under responsibility of fondazione simone cesaretti aurora cavallo et al. / agriculture and agricultural science procedia ( ) – barthel et al., ). the pathways in development that preceded the agricultural revolution have been re-invented, and market gardening and arboriculture are a feature of the suburban fringe of many italian cities. starting from the observation of this phenomenon, our work aims at interpreting the context of rome through factors that outline and define the relationship between city and countryside, focusing in particular on the mediterranean setting, with the aim of proposing a taxonomy of the types of farming developing within the roman environment. our intention is to identify criteria that can translate farming models relating to function and space into specific processes, on a metropolitan scale. the paper is organized as follows. in the next section, we outline some of the major features of the changing rural urban relationship and the reasons why a need for a focus on the primary sector within a metropolitan environment has arisen. in section and , we examine the case of rome. section provides some brief conclusions. . changing in city-countryside relationships the urban zones of the mediterranean area are the historical nodes of an exchange system that goes beyond the borders of the individual nations in which they are located. echoing matvejevitch ( ), we could say that the mediterranean itself invented the city. according to weber, examining urban phenomena implies looking also at the areas in a territory “dominated” by the cities, where, in addition to the authority exercised by city dwellers based on economic forces, dynamics of social and political power also come into play (petrillo, ). the relationship between cities and neighbouring territories, especially in the mediterranean context, is marked by relationships of dominance, which are often manifested through behaviour - typical of the urban environment - of seeking profit, accumulating capital and projecting urban influence onto the surrounding territory, thereby extending economic, social and environmental trends and logics beyond a city’s physical and functional dimensions. while the processes of urbanisation have been, at least in part, determined by the economic and social transformations of the industrial revolution, the more recent progress towards an advanced tertiary sector has set the conditions for the definitive development of urban systems. several features emerge in this framework that differentiate mediterranean environments from those of the continent as a whole. as highlighted by salvati ( ), an analysis of mediterranean cities captures the contrast between a more mature urban model, typical of the northern shoreline - despite not being completely balanced or morphologically compact - and a more spontaneous and largely disorganised archaic model, associated to the southern shoreline, whose structures are only apparent in regions with greater history, politics and settlements. in these mediterranean areas, from the early th century onwards, urban growth has concentrated in large and medium-sized cities, in tendentially more compact forms. following a dynamic process, cities first experienced overcrowding in central areas, caused by the increase in population, and, later on, in the city outskirts. this was succeeded by a period of densification in the urban fringe, still relatively close to the city centre, with city planning chasing housing growth in the recurrent trend apparent in the urban areas of lisbon, barcelona, marseille, rome, naples, athens, thessaloniki, istanbul and, to a lesser degree, of many other cities situated on the northern shores of the mediterranean. in such a changing context, it is worth asking whether cities still exist and in what form. harvey ( ) states that, over the past years, the world has become totally urbanised, losing the duality aspects whereby city and country life were distinct from each other. the reality today consists in continuously intersecting and disjointedly connected city and countryside. indovina ( ) also identified the outcome of this process in the forms that a metropolis takes within a territory, where services and dimension are still those of a modern city, while density is a completely new factor. in this context, there is space to redefine the roles and configurations assumed by the primary sector within a metropolitan environment. where does the urban form develop and what relationships does it establish with the countryside and landscape? where does rome finish? what are its boundaries? how can the various configurations of the territory and approaches to planning - those relating to space and relationships - within the roman area be classified? in italy, recent regulatory developments have called into question the structure of metropolitan areas (law n. ). metropolitan cities are seen as vast urban bodies extending over large areas, partially inspired by the european administrative models of london, amsterdam and barcelona. metropolitan cities take responsibility for the fundamental functions of general planning in the territory, the organisation of co-ordinated public services, aurora cavallo et al. / agriculture and agricultural science procedia ( ) – mobility and traffic management, economic and social development. these changes present new challenges and opportunities linked to the statute regulating the modalities and tools to co-ordinate the overall governance of the metropolitan area. with the purpose of interpreting the complex transformations that affect the urban phenomenon and their relations with the agricultural and rural landscape and also the intermediate configurations, we decided to start from the principle of territorialisation developed during the cognitive process that can be traced back to the work of the ministry for territorial cohesion under fabrizio barca (dps, ). the distinctions between rural and agricultural environment are identified by the central role that, in the second case, is taken by agricultural activity. this imprints a territorial organisation on the territory, linked to settlements and socio-economic structures, all associated to primary production. in the case of rural territories, the primary sector is one of its activities and forms (together with forestry and natural areas, etc.), without necessarily being the most prevalent. the focal point of this work is the polycentric nature of the italian territory, where groups or networks of towns are the centres around which gravitate more or less peripheral areas. the most convincing element of barca’s classification seems to be that of placing urban areas at the centre of the dynamics of a territory, and so capturing their significance as pole attractors and ability to act as pivots in local processes. the main factor for the classification is, therefore, access to essential services, such as education, mobility and health, together with a factor relating to size for urban areas with a population of over , . in detail, the classification in question starts by identifying the urban poles and then distinguishing the other classes into suburban, intermediate, peripheral and outermost peripheral areas. in this work, these classes have been incorporated into three categories, urban (the poles), suburban (peripheral and intermediate areas) and rural (peripheral and outermost peripheral). mediating between the size-related factor and that linked to accessibility, and assuming that the availability of essential services is a variable describing future development (of both settlements and production), this classification can define particular situations where contiguous urban and suburban areas are apparently fused together (figure ). alongside this, is the snapshot produced by barca’s classification of the landscape. while suburban and urban expansion prevails along the eastern arch of rome, the urban fabric suddenly interrupts along the western arch, leaving large swathes of agricultural land. the urban-rural boundaries, therefore, take on different forms and meanings, while remaining defined by the concurrence and interpenetration of city and agriculture. therefore, dealing with the processes of exchange between city and countryside, and the transformation to the relationships between an urban demand and a rural or agricultural offer, implies both reading the dynamics of change in an evolutionary prospective, and verifying the interpretive categories chosen to decode the events taking place. aurora cavallo et al. / agriculture and agricultural science procedia ( ) – fig. . rome: city-countryside relationships at metropolitan scale. corine land cover agricultural areas artificial surfaces forest and semi natural area water bodies tipology urban periurban rural aurora cavallo et al. / agriculture and agricultural science procedia ( ) – figure – rome: clc, . the role of urban agriculture in rome a tradition of strong links between urban population and local agriculture characterized rome throughout the various historical ages, until the last decades, when the industrialized long food chains has become dominant. nowadays, the relations between rome and its surrounding countryside can be better understood with reference to the spatial distribution of the urban suburbs and settlements. on consulting the last agricultural census (istat, ), opposing trends are recorded for the city of rome compared to the metropolitan, regional and national trends. the area cultivated within the city of rome between and has increased, registering a growth of , hectares, nearly % of the “utilised agricultural area” (uaa). a similar increase was recorded for the “total agricultural area” (taa) , which grew by , hectares, an increase of % compared to the previous census. looking carefully at all the transformations taking place within the productive fabric of the area, here also the tendency runs counter to the metropolitan, regional and national trends. in the city of rome, over the past ten years, farms were surveyed, % more than in , and there are , farms in rome today. this is even more interesting if compared with similar data relating to other italian and mediterranean contexts, where, over the last ten years, the cultivated areas within the urban and metropolitan area the total agricultural area (taa) is equivalent to the total area on a farm used for growing crops, including woods and uncultivated agricultural land and other land occupied by parks, gardens buildings, ponds, canals, etc. the utilised agricultural area (uaa) is all the land used for growing crops, plus the areas occupied by household vegetable gardens, perennial fields and meadows, trees cultivated for their produce and chestnut groves. it is the land used by the farm for growing agricultural produce. aurora cavallo et al. / agriculture and agricultural science procedia ( ) – have decreased significantly. looking at the information relating to size of farms in the territory of the city of rome, just under % of these farms are classed as tiny (less than one hectare), slightly less than for greater rome, where small-sized farms are % of the total number. in the capital, the farms between one and five hectares are % of the total, those between five and ten hectares are slightly less than %, the medium-sized farms, between ten and hectares are also %, and medium-large and large farms, to over hectares, are less than % of the total number. this reveals an extremely fragmented land structure, and a certain fragility in terms of landownership as an instrument for preserving the landscape. from the point of view of the distribution of farms by acreage covered, large operations of over hectares, despite being only % of the total number of roman farms, occupy over % of the uaa. farms of between and hectares cultivate over % of the land, while those between and hectares all together own % of the agricultural land. farms between and hectares occupy % of the uaa, and those up to hectares slightly over % of the total uaa. the detail of a cross-survey examination by land size reveals that, in the decade under examination, the number of smaller farms - those up to two hectares in size - increased, as did those between and hectares. the overall picture of how the uaa has evolved shows that the increase of cultivated areas is distributed relatively homogeneously among the different crops. the area used for crops from woody plants grew by % in years, followed, in order of growth, by tree plantations for wood production, which increased by . % and arable crops, with a growth of just under %. among the latter, there is a preponderance of rotated fodder crops and cereals for producing grain, while olive trees and vines are among the woody plants cultivated for their crops. between the two surveyed intervals, farms practising organic methods went from to units, increasing from . % to . %. arable crops take up the bulk, and for the area of rome alone, they represent nearly % of the total cultivated area at the metropolitan level. in terms of land area, the most significant crops are potatoes, nearly % of the total for the province, and also beets, industrial plants and fodder. trees are cultivated on , hectares at rome, occupying % of the land in the metropolitan area where woody crops are grown. among the latter, olive trees unquestionably prevail, with , hectares, followed by vines, with hectares. at a metropolitan level, protected crops (in greenhouses) and grazing meadows play a considerable role, with a total of , hectares, more than % of the entire metropolitan area. the canvas of roman agriculture is completed by the livestock sector. despite the current difficult economic phase faced by livestock in the lazio region as a total, in rome, the sector is of primary importance, especially when looking at the role of dairy farms, with cattle about % and buffalo over % of the farms in the greater metropolitan area, while sheep breeding involves % of farms in the total area. together with the complex agricultural mosaic of the metropolitan environment, the other prevalent feature seems to be the vitality of roman farms (marino et al., ), especially those within protected areas, % of the total, when specifically looking at diversification, multi- functionality and innovation (cavallo et al., ). the landscape is still that of the roman countryside, with cultivations of grain and fodder, intermingled and dotted with natural vegetation. the role played by the local food network in rome is remarkable, particularly in case of farmers’ market, solidarity purchased groups’ (spg) and those linked to box schemes experiences have seen significant success. the increasing importance of alternative and local food networks is showed in the data: the % of rome municipalities farms sell directly (istat, ) it was registered an increase of + % farmers’ market at municipality level and of + % in rome’s province ( / ) (marino et al., ). however farmers’ markets are increasingly common, that are held periodically with different cadences (once a week, once or twice a month) and involve from to more than farmers. nowadays, we register spg’s of which in the city of rome, therefore there are . local food farms (direct sale) ( of these in rome city) and farmers’ markets ( of these in rome city. is considerably also the role played by social farming also due to the province of rome, who established under law no. / the forum social farms, as an advisory body that aim to study, to coordinate and monitoring the social farms of the area. the local food network behind agriculture in the city, within a number of integrated social agrarian cooperative, who represented an alternative food production system and landmark for many initiatives carried out by the civil society, associations, cooperatives, volunteer and school sectors, community supported agriculture (csa) initiatives. in terms of environmental values we considered the role played by roma natura, the authority who manage the protected area of rome in order to promote forms of agricultural development compatible and offer new opportunities to the best vocations of the territory, in cooperation with farm union, coldiretti and confagriculture, aurora cavallo et al. / agriculture and agricultural science procedia ( ) – has promoted a register of multifunctional farms (rim). nowadays, farms are registered. these protected areas are the main environmental infrastructure of rome, and the city has assigned to these vast parks the role of green structures on a metropolitan level. nearly all of rome’s parks have large agricultural areas – apart from limited forest areas. since the first census of horticultural gardens in rome in , the number of urban gardens has risen considerably, but the phenomena is strictly spontaneus character based on informal dynamics, single households both in small plots of land (along theriverbanks or in other marginal areas). since , the city of rome saw the rising of urban garden and allotments experiences, in which part of land are divided into smaller plots, farmed by group of pro-active citizens. the main beneficiaries are supposed to be the persons directly engaged in the activity, but there are also initiatives open to a wider usage such as special events. the rome municipality has estabilish in “parco della consolata” an allotment gardens of . squared metres with plots. to conclude, researchers from the italian institute of agriculture economics (inea) have developed a methodology for mapping all the cultivated fields in the city by photo interpretation and by exploiting the features of the most used web-mapping services, a kind of spatial database concerning urban agriculture in the city of rome. the current version of the database contains more than . covering a total surface of about . hectares with a total farmed area of about hectares. the geo-referenced database was realized by interpreting the high resolution images of google earth for the year and , with the aim to allow further analysis on the temporal evolution of the initiative. . best practices in urban agriculture in rome the cooperative “agricoltura nuova” is one of the most relevant and well-established initiatives of social professional farming in rome because of the wide range of the activities that it covers. the cooperative received part of the land for their pet-therapy activities for disable people and weak communities. it is represents a relevant experience for using agriculture and food as a tool for building new forms of social cohesion. the project “orti solidali” – solidarity garden project – started in , aiming to create a more sustainable way of food consumption. the project tried to create a closer relation among consumers and producers, acting as a tool to take benefit of the current food climate, in order to encourage a more sustainable production with greater accountability to consumers and with fair returns for producers. often, farm workers involved in the project are young refugees, this aspect clearly underlines a usage of the land as a tool for social inclusion. each garden plot is allocated to a family or an individual, who is supposed to pay an annual subscription and receives a fixed amount of vegetables, every week. regarding the public food service, one of the most important project deserving to be presented is known as the quality revolution, concerned with school canteen service in rome. in the last decade the concept of quality has been widely used to describe the dynamics that have been shaping the system of food and agriculture. in order to understand the nature and implications of the relationship between quality and policy in the public food service sector, in rome, it is fundamental to start from the analysis that roberta sonnino and kevin morgan ( ) and concerning the school food revolution started years before. when law / was issued , rome was governed by the green party administration and the mayor was francesco rutelli, interested in promoting organic within catering service in schools. the strategy involved representatives from the organic certification bodies, which were asked to identify those product able to sustain the impact of rome’s public food service massive demand. considered the large market involved, contracted companies requested and obtained a dialogue with the municipality authorities, in order to produce a shared willingness and direction (sonnino, ). nowadays the central department of education actively promoted and monitored a new initiative, involving an agricultural cooperative in a primary school “uruguay”, where twice a month the school meals come from a farm based near the school itself. a consolidated and also increasing ua type is the educational gardens linked with municipality, as well as social farming network, involving school groups and young people within their school and extracurricular activities to improve the awareness to the issues of the environment and nutrition. aurora cavallo et al. / agriculture and agricultural science procedia ( ) – . final remarks the issues linked with urban agriculture call for a framework integrating a wide range of sustainable food and agriculture system elements into a community at a site, neighbourhoodor city-region level, beyond the boundaries of the urban areas itself, including towns, semi-urban areas, and outlying rural lands. cities are a part of social- ecological systems and agricultural production is an integrated urban activity that contributes to the resilience of cities. most future urban expansion will occur in areas of low economic and human capacity, which will constrain the conservation of biodiversity and management of ecosystem services. city-region food systems are an increasingly important driver for many other urban policies such as health and nutrition, education, landscape management, transport, environment, waste and water management, disaster risk reduction, adaptation to climate change and social welfare. a growing number of local governments across the world are rebuilding their food systems through innovative public policy. a paradigm shift in both planning and policy formulation is required in order to ensure access to food, foster inclusion and innovation, improve environmental management, enhance rural- urban linkages and provide policy guidance at both national and municipal level. the character of urban food policy food calls for a concerted commitment at both eu and national level as well as city-region efforts. to implement wide-ranging food policies cities should have a designated department that works as a vehicle for change, policy making, facilitating projects, providing consultancy, training, communication affecting all stakeholders in the food system able to manage the changing in urban phenomenon. in terms of structure and planning, the metropolitan city assumes the strategic functions and some operational functions on a greater scale (transport, large infrastructures, environment, waste, etc.) and local administrations, formed into associations, are given the full operational responsibility for planning decisions at a local level that concern their territory (mariano, ). by redefining the relationships between city and surrounding countryside, the relationship between rural areas and metropolitan and urban environment requires both a multi-level approach and local governance. in this development, agrarian territories can become milieux innovateurs (camagni and maillat, ), within catalysing processes mediated by urban environments, that encourage systems of relationships based upon geographical - and indeed social, economical and cultural - proximity, generating innovation and learning processes, which, in turn, will give rise to collective projects and actions, over and beyond the district and regional level. in this sense, it would appear that challenges and opportunities linked to the new structure are, in particular measure, connected to the role of the statute, which was introduced to regulate the modalities and tools for co-ordinating the overall action of governance in the metropolitan territory. can ambiguity - between city practices and country practices - be found in the current interpretation and transformation models of the territory? what is the right level? what should define which implementation tools? on addressing this questions, the possibility emerged that landscape can be interpreted by comparing the aspects relating to productive processes that are typical of an agrarian landscape, and, precisely, farm regulations, extension, relationship with the city system and localisation. this interpretation emerges downstream from the observation that states that any landscape, of any type, quality or extension, is the result of transformative actions, and, therefore, once the descriptive features of the community - in this case the farm - that help its configuration are identified, it is possible to interpret the landscape and direct its transformation contextually. communities transform the landscape. trying to interpret a landscape without taking into account the transformation process carried out by the communities that live there means just taking a snapshot of a permanent process. only by keeping interpretation and transformation together is it possible to act on the landscape through strategies that are shared and, therefore, effective. in the face of a renewed attention to the debate on what is defined by some as the “new urban question”, public policies are required to deal, on the one side, with the sustainable restructuring of existing buildings and, on the other, with building density in relation to protecting the agricultural territory and boundary areas. references camagni r. and maillat d. 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[pdf] knowledge of and attitudes toward nonpharmacological interventions for treatment of behavior symptoms associated with dementia: a comparison of physicians, psychologists, and nurse practitioners. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /geront/gnr corpus id: knowledge of and attitudes toward nonpharmacological interventions for treatment of behavior symptoms associated with dementia: a comparison of physicians, psychologists, and nurse practitioners. @article{cohenmansfield knowledgeoa, title={knowledge of and attitudes toward nonpharmacological interventions for treatment of behavior symptoms associated with dementia: a comparison of physicians, psychologists, and nurse practitioners.}, author={j. cohen-mansfield and barbara jensen and b. resnick and margaret norris}, journal={the gerontologist}, year={ }, volume={ }, pages={ - } } 	j. cohen-mansfield, barbara jensen, + author margaret norris 	published 	medicine 	the gerontologist purpose of the study behavior problems are common in nursing homes. current guidelines recommend nonpharmacological interventions (nphis) as first-line treatment, but pharmacological regimens (pis) continue to be used. given differences in background and training of those who treat behavior problems in residents, we compared attitudes of physicians (mds), psychologists (phds), and nurse practitioners (nps) concerning pi and nphi usage as well as knowledge of nphis. design and methods one… expand view on pubmed academic.oup.com save to library create alert cite launch research feed share this paper citationshighly influential citations background citations view all tables and topics from this paper 	 table 	 table 	 table 	 table 	dementia 	breast feeding 	pharmacology 	abnormal behavior 	attitude 	accidental falls 	nursing homes 	myelodysplastic syndrome citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency non-pharmacological interventions in residents with behavioral and psychological symptoms of dementia 	kelli ray 	medicine 	 	highly influenced 	view excerpts, cites background save alert research feed knowledge of and perceived need for evidence-based education about antipsychotic medications among nursing home leadership and staff. 	c. lemay, k. mazor, + authors j. tjia 	medicine 	journal of the american medical directors association 	 	 save alert research feed a mixed methods exploration into the management of behavioural and psychological symptoms of dementia in care homes: care approaches, strategies and psychotropic medications 	t. backhouse 	medicine 	 	 	highly influenced 	pdf 	view excerpts, cites background save alert research feed 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dementia 	박효진, h. o. park 	medicine 	 	highly influenced 	view excerpts save alert research feed psychological factors related to nurses' intentions to initiate an antipsychotic or psychosocial intervention with nursing home residents 	b. ludwin, s. meeks 	psychology, medicine 	geriatric nursing 	 	 save alert research feed american psychological association practice guidelines for psychopharmacology: ethical practice considerations for psychologists involving psychotropic use with children and adolescents. 	s. goldberg, kathryn wagner 	psychology, medicine 	journal of clinical psychology 	 save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency assessment and treatment approaches for behavioral disturbances associated with dementia in the nursing home: self-reports of physicians' practices. 	j. cohen-mansfield, barbara jensen 	medicine 	journal of the american medical directors association 	 	 save alert research feed 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institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue [pdf] systematic review of early intensive behavioral interventions for children with autism. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / . : ;nd corpus id: systematic review of early intensive behavioral interventions for children with autism. @article{howlin systematicro, title={systematic review of early intensive behavioral interventions for children with autism.}, author={p. howlin and i. magiati and t. charman}, journal={american journal on intellectual and developmental disabilities}, year={ }, volume={ }, pages={ - } } 	p. howlin, i. magiati, t. charman 	published 	medicine 	american journal on intellectual and developmental disabilities recent reviews highlight limitations in the evidence base for early interventions for children with autism. we conducted a systematic review of controlled studies of early intensive behavioral interventions (eibi) for young children with autism. eleven studies met inclusion criteria (including two randomized controlled trials). at group level, eibi resulted in improved outcomes (primarily measured by iq) compared to comparison groups. at an individual level, however, there was considerable… expand view on pubmed behaviorpedia.com save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations results citations view all tables and topics from this paper 	 table 	 table 	autistic disorder citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency review of early intervention for children with autism spectrum disorder: focused on randomized controlled trials 	y. yang 	medicine 	soa--ch'ongsonyon chongsin uihak = journal of child & adolescent psychiatry 	 	pdf save alert research feed early comprehensive behaviorally based interventions for children with autism spectrum disorders: a summary of findings from recent reviews and meta-analyses 	i. magiati, x. j. tay, p. howlin 	psychology 	 	 	pdf 	view excerpt save alert research feed a systematic review and meta-analysis of comprehensive interventions for pre-school children with autism spectrum disorder (asd) 	yoshiyuki tachibana, celine miyazaki, + authors y. kamio 	psychology, medicine 	plos one 	 	 	pdf 	view excerpts, cites methods and background save alert research feed efficacy of early interventions for infants and young children with, and at risk for, autism spectrum disorders 	r. landa 	medicine 	international review of psychiatry 	 	 	 save alert research feed behavioral interventions for children with autism spectrum disorders. 	l. leblanc, j. gillis 	medicine 	pediatric clinics of north america 	 	 save alert research feed a meta-analytic study on the effectiveness of comprehensive aba-based early intervention programs for children with autism spectrum disorders 	n. peters-scheffer, r. didden, h. korzilius, p. sturmey 	psychology 	 	 	pdf save alert research feed a systematic review with meta-analysis of comprehensive interventions for preschool children with autism spectrum disorder (asd): study protocol 	yoshiyuki tachibana, j. green, y. hwang, r. emsley 	medicine 	bmj open 	 	 	pdf save alert research feed evidence base update for autism spectrum disorder 	t. smith, suzannah iadarola 	psychology, medicine 	journal of clinical child and adolescent psychology : the official journal for the society of clinical child and adolescent psychology, american psychological association, division 	 	 	pdf 	view excerpts, cites background save alert research feed outcome for children with autism receiving early and intensive behavioral intervention in mainstream preschool and kindergarten settings. 	s. eikeseth, lars klintwall, e. jahr, peter karlsson 	psychology 	 	 	highly influenced 	pdf 	view excerpts, cites methods and background save alert research feed imitating the child with autism: a strategy for early intervention? 	jane s. m. lidstone, mirko uljareviÄ, hilary kanaris, julie mullis, laura fasoli, s. leekam 	psychology 	 	 	pdf 	view excerpt, cites background save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency interventions for young children with autism 	shari levy, a. kim, melissa l. olive 	psychology 	 	 save alert research feed comprehensive synthesis of early intensive behavioral interventions for young children with autism based on the ucla young autism project model 	b. reichow, m. wolery 	psychology, medicine 	journal of autism and developmental disorders 	 	 	pdf save alert research feed empirically supported comprehensive treatments for young children with autism. 	s. rogers 	psychology, medicine 	journal of clinical child psychology 	 	 save alert research feed randomized trial of intensive early intervention for children with pervasive developmental disorder 	tristram smith, a. groen, j. wynn 	psychology 	 	 	highly influential 	view excerpts, references methods and background save alert research feed randomized trial of intensive early intervention for children with pervasive developmental disorder. 	t. smith, a. groen, j. wynn 	medicine 	american journal of mental retardation : ajmr 	 	 	highly influential 	pdf 	view excerpts, references background and methods save alert research feed long-term outcome for children with autism who received early intensive behavioral treatment. 	john mceachin, t. smith, o. i. lovaas 	psychology, medicine 	american journal of mental retardation : ajmr 	 	 	pdf save alert research feed designing research studies on psychosocial interventions in autism 	t. smith, l. scahill, + authors a. wagner 	psychology, medicine 	journal of autism and developmental disorders 	 	 	view excerpt, references results save alert research feed a new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. 	c. aldred, j. green, c. adams 	psychology, medicine 	journal of child psychology and psychiatry, and allied disciplines 	 	 save alert research feed a pilot randomised control trial of a parent training intervention for pre-school children with autism 	auriol drew, g. baird, + authors t. charman 	psychology, medicine 	european child & adolescent psychiatry 	 	 	view excerpts, references background save alert research feed intensive behavioral treatment for children with autism: four-year outcome and predictors. 	glen o sallows, tamlynn d graupner 	psychology, medicine 	american journal of mental retardation : ajmr 	 	 	pdf save alert research feed ... ... related papers 	abstract 	tables and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue mental health research priorities in australia: a consumer and carer agenda research open access mental health research priorities in australia: a consumer and carer agenda michelle a. banfield * , alyssa r. morse , amelia gulliver and kathleen m. griffiths abstract background: the perspectives of mental health consumers and carers are increasingly recognised as important to the development and conduct of research. however, research directions are still most commonly developed without consumer and carer input. this project aimed to establish priorities for mental health research driven by the views of consumers and carers in australia. method: the project was conducted in two studies. firstly, a face-to-face discussion forum held in the australian capital territory (study ; n = ), followed by a national online survey (study ; n = ). participants in both studies were members of the community who identified as a mental health consumer, carer or both. in study , participants developed topics for mental health research in small group discussions, then voted on which topics, developed across all groups and sorted into thematic areas, were a priority. an online survey was developed from these research topics. study participants were asked to rate topics on a -point priority scale and rank the relative importance of the highest-rated topics. results: at the forum, topics were generated and grouped into thematic areas. votes on priorities were spread across a large number of topics, with the greatest overall support for research relating to integrating care that is sensitive to past experiences of trauma into mental health service delivery (trauma-informed care). survey responses were similarly spread, with the majority of research topics rated as important by at least % of participants and no clear individual priorities for research identified. amongst items rated as important by approximately % of participants, key research areas included the delivery of services, and consumer and carer involvement. conclusions: australian mental health consumers and carers demonstrate a strong understanding of the mental health system and its inadequacies. although clear specific priorities are difficult to establish, consistent areas of focus are services and the role consumers and carers can play in their improvement. however, for consumer and carer views to be at the forefront of research, it is important to regularly update research agendas and work in partnership across the whole research process. keywords: consumer and carer involvement, mental health, priority-setting, research introduction the importance of consumer and carer involvement in mental health research is well established [ – ]. in australia, the statement on consumer and community participation in health and medical research outlined the importance of consumers and the community playing an active role in health and medical research [ ]. growing ac- ceptance of the mental health recovery movement creates a solid foundation for consumers and carers to move beyond tokenistic or advisory modes of participation and into meaningful and effective involvement [ ]. internationally, these efforts have increased the con- sumer and carer voice in priority-setting [ ]. for example, the james lind alliance initiative (based in the united kingdom) and the roadmap for mental health research in europe project have included consumers, carers and other stakeholders in large-scale priority-setting exercises for research into specific disorders and mental health more generally [ , ]. however, published examples of consumers and carers defining the research agenda and actively participating in research in australia are limited * correspondence: michelle.banfield@anu.edu.au centre for mental health research, the australian national university, eggleston rd, acton, act , australia full list of author information is available at the end of the article © the author(s). open access this article is distributed under the terms of the creative commons attribution . international license (http://creativecommons.org/licenses/by/ . /), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated. banfield et al. health research policy and systems ( ) : https://doi.org/ . /s - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf http://orcid.org/ - - - mailto:michelle.banfield@anu.edu.au http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / [ ]. although the research community uses a number of priority-setting methods, consumer and carer perspectives remain largely absent in mental health research priority-setting [ ]. given their unique and valuable perspectives in identifying areas and issues of emer- ging importance [ ], or those that have otherwise been overlooked [ ], consumers and carers have much to contribute with significant capacity for leadership in this space [ ]. acacia – the australian capital territory (act) consumer and carer mental health research unit – at the australian national university (anu), was estab- lished in response to the need for consumer- and carer-led collaborative research. acacia aims to enable consumers and carers to take an active role in relevant, high quality mental health research [ ]. the unit is led and staffed by researchers with lived experience as a consumer or carer who facilitate the engagement of con- sumers and carers from the community in the work of the unit, and bridge the often difficult gap between aca- demia and mental health communities [ ]. a key objective of acacia is the collaborative devel- opment of a research agenda to address consumer- and carer-identified issues, such as service gaps in the act and australia more broadly. this paper reports the find- ings from two consecutive studies to address this object- ive, namely a face-to-face discussion forum to develop topics and set initial priorities (study ) and an online survey to extend and update priorities (study ). the ethical aspects of the research were approved by the anu human research ethics committee (protocol number / ). all participants provided written or online informed consent. study : discussion forum method participants participants who self-identified as consumers and/or carers were invited to participate, recruited via advertise- ments distributed through the mailing lists of act con- sumer and carer networks. advertisements were also emailed to act members of the depression and anxiety consumer research unit register, a database of people who have expressed an interest in research conducted at the anu centre for mental health research (cmhr). procedure a face-to-face discussion forum was held in november . consistent with acacia’s commitment to con- sumer and carer leadership, all those involved in running the forum had lived experience of mental health issues. a local well-known consumer advocate facilitated overall proceedings, and small group discussions were facilitated by acacia staff (n = ) or acacia consumer and carer advisory group members (n = ). small groups of – participants selected their own seats at one of four tables, each of which had a note-taker and a fa- cilitator present. facilitators assisted groups to express and formulate their ideas into topic areas that could be researched. the detailed protocol for the discussion forum is pro- vided in additional file . the forum priority-setting comprised three parts, as follows: ( ) identifying broad research areas within discussion groups, ( ) refining the ideas into specific topics and questions, enabling partici- pants to participate in the early stages of a modified the- matic analysis [ ], and ( ) prioritising the research topics. researchers and advisory group members col- lated the topics and questions into broad thematic areas by consensus, using an inductive approach [ ]; themes were displayed on flipcharts in the forum venue for the prioritisation. priorities were identified using a “dot-moc- racy” [ ] process. each participant was provided with five coloured adhesive dots. the colour of the dot indi- cated which group – consumer, carer, or people who identified as both (hereafter called consumer/carers) – the participant self-identified with. each dot represented one vote for a topic or thematic area. participants were free to distribute their dots across as many or few topics as they wished. analysis as described above, inductive thematic analyses [ , ] were an integral part of the forum proceedings. the- matic analysis methods [ ] were adapted to facilitate the development of topics for future research. instead of developing descriptive codes, forum participants devel- oped and refined research topics from the content of their discussions. these topics were collated and assigned to themes by the consumer and carer re- searchers, assisted by advisory group members. results comprise the number of votes each topic or thematic area received from consumers, carers and consumer/ carers. further thematic analyses were conducted by re- searchers after the forum to produce a final list of re- search themes. the findings from the forum were circulated to participants for feedback. no further refine- ments were made. results participants a total of people ( female, male) with lived ex- perience as a consumer and/or carer attended the forum. of these participants, who identified as consumers, five as carers and five consumer/carers participated in the priority-setting exercise (one consumer participant left before the exercise was conducted). no further banfield et al. health research policy and systems ( ) : page of demographic information was collected from forum participants. research priorities seventy-nine topics for research in broad thematic areas were developed by participants and collated for prioritisation at the forum. the themes were services; treatment; medication; health professionals; comorbidity and physical health; justice; consumer and carer involve- ment; stigma; experiences of care; carers, family and friends; national disability insurance scheme (ndis); language and communication; peer to peer; and legisla- tion. additionally, a list of individual ‘other’ topics (e.g. recovery and fulfilling potential, employment) was com- piled. the available votes ( from consumers, from carers and from consumer/carers) were broadly distributed across of the topics (additional file ). research on trauma and service delivery was highly rated: ‘the integration of trauma-informed care into ser- vice delivery’ was considered important by all three par- ticipant groups and received the highest overall number of votes (n = ), and ‘is care traumatising’, received votes ( from consumers and from carers). ‘peer-led services’ and ‘recovery and fulfilling potential’ were also considered important, each receiving six votes. there were some differences in the focus of research priorities between consumers, carers and consumer/ carers. whilst consumer/carer votes were distributed widely across topics, the votes for research into ‘peer-led services’ and ‘recovery and fulfilling potential’ were pri- marily from consumers, and no participants identifying solely as a carer voted for these topics. consumers were the only group to vote for research into the effects of ‘stigma’, ‘human rights legislation’ and ‘learned helpless- ness in response to experience of services’. carers fo- cused on research related to ‘interaction with health professionals’ and the ‘care experience’, including the in- fluence of ‘privacy’ on care, as well as the effects of ‘drug and alcohol use’. study : priority-setting survey method to update the research agenda developed in and extend participation nationally, a second study of re- search priority-setting, comprising an online survey, was undertaken in . the methods used were based on a previous survey investigating priorities for depression and bipolar disorder research conducted by the lead author [ ]. participants to recruit participants for the online survey, advertise- ment targets used for the discussion forum were ex- panded to include both national and state-based health consumer and carer organisations. advertisements were also disseminated through the lived experience re- search register (a database of consumers and carers who have expressed interest in participating in acacia re- search), the cmhr website and the cmhr social media accounts. recruitment flyers were distributed at commu- nity events during national mental health week. survey participants were required to be at least years old and live in australia. procedure the survey was conducted over weeks in september and october . survey items were developed from the research topics formulated by participants at the forum, specifically taking care to preserve original word- ing. additional items that were not well-represented by the original topics presented to forum participants were developed from the detailed notes on the small group discussions in study . eighty-seven items were included in the survey, each representing a single topic. items were presented within the broad thematic areas that were identified by researchers at the forum. demo- graphic information (age, sex, identification as a con- sumer and/or carer, state/territory of residence) was collected at the beginning of the survey. a copy of the survey is provided in additional file . survey participants were asked to rate the priority of each research topic on a -point likert scale ( = very low priority to = very high priority). all items an indi- vidual participant rated as of very high priority ( ) were collated by the survey software. participants were then asked to rate all items they designated as high priority in order of relative priority using a ‘drag and drop’ process. to encourage variation in an individual’s ratings and create a manageable list to rank, participants were in- formed about the ranking process before commencing the survey, and reminded at the top of each page that anything rated as ‘very high priority’ would appear in the ranking list. however, feedback provided in the com- ments section indicated that the ranking process proved too difficult for most participants, raising serious con- cerns about the validity of the relative rankings. results are therefore restricted to analysis of the ratings data as described in the next section. participants were also invited to suggest new research topics or provide comments in open-ended questions at the end of each theme and after the ranking exercise. analysis ratings due to the large number of survey items and relatively low number of participants, inferential statis- tics were not used to compare ratings between groups. a descriptive analysis was performed, examining the dis- tribution of ratings and comparing the content of the banfield et al. health research policy and systems ( ) : page of highest-rated items. all quantitative analyses were per- formed in ibm spss statistics . missing data for each item ranged from . % to % and progressively increased across the survey. the order of survey items was not randomised and items presented later in the survey appear to have been impacted by par- ticipant fatigue. due to the pattern of missing data, par- ticipants were included in descriptive analyses if they had completed any of the rating items. no participants or variables were excluded from the analysis based on missingness. the distribution of responses to individual rating items were visually examined and a majority of items were found to be negatively skewed. based on this observa- tion, participant ratings were dichotomised [ ] as fol- lows: important (combining very high ( ) and high ( ) priority ratings) versus all other (combining moderate ( ), low ( ) and very low ( ) priority ratings). for each participant group (consumers, carers and consumer/ carers), the percentage of participants whose ratings were in the ‘important’ category for each item was calcu- lated. to address missingness and drop-out across the survey, a valid percentage was calculated based on the number of participants who completed an item, not the total number of participants. items were then ranked within participant groups in descending order of the per- centage of ‘important’ ratings. tied rankings were assigned the mean rank [ ]. the distribution of ‘im- portant’ ratings across items and groups was examined for consensus on clear ‘top’ priorities or cut-off points for the highest priorities for research. open-ended responses qualitative analyses of the sur- vey comment data were conducted by one author (arm) and managed using qsr international’s nvivo software. participants’ open-ended responses were examined using a framework analysis approach [ ]. the coding framework was developed from the key areas for research identified in the descriptive quantitative ana- lysis. carer participants provided written responses more frequently than consumer and consumer/carer partici- pants; thus, the framework analysis findings may favour carer priorities and concerns. qualitative findings are in- corporated with quantitative findings to provide add- itional detail. results participants table presents the demographic data for survey partici- pants. a total of consumers and/or carers participated in the online survey, including consumers, carers and consumer/carers. the mean age of participants was . years (sd . , range – ). all australian states and territories were represented in the sample, although the majority of participants were from the act, new south wales and victoria. research priorities table presents the percentage of ‘important’ ratings for each item by participant group. items were ranked within participant groups based on relative percentage (i.e. = highest percentage of ‘important’ ratings; = lowest percentage). no consensus on clear ‘top’ priorities for research was observed. most items were rated as im- portant by at least % of consumers ( items), carers ( items) and consumer/carers ( items). a small number of items were rated as important by all, or al- most all, participants within a group. however, the per- centage of ‘important’ ratings gradually decreased across items (table ) with no obvious cut-off point for top re- search priorities. participants’ open-ended responses further emphasised the ongoing need for research and evaluation across a broad range of topics, reflecting on the extent of per- ceived problems with the system. “i hate to say this but the list [of research priorities] touches directly on most of our carers and consumers involved in the mental health system. your list shows table survey demographic data number percent group consumer . carer . consumer and carer . total n gender male . female . othera . prefer not to say . total n state or territory australian capital territory . new south wales . northern territory . queensland . south australia . tasmania . victoria . western australia . total n anon-binary trans-masculine = , genderqueer/genderfluid = , not specified = banfield et al. health research policy and systems ( ) : page of table research priority ratings for consumers, carers and consumer/carers research topic topic area priority ranking (percentage important ratings) consumer carer consumer/carer how to implement internationally recognised models of peer support in australia peer to peer ( ) ( ) . ( ) over-representation of mental illness in the justice system justice ( ) . ( ) ( ) how is psychosocial disability defined in the ndis, and how will it impact consumers and carers in australia? national disability insurance scheme . ( ) ( ) . ( ) how does the use of language include/exclude individuals? language and communication . ( ) ( ) . ( ) consumers’ experiences of peer-to-peer services peer to peer . ( ) ( ) . ( ) social inclusion other . ( ) . ( ) . ( ) how participation works in practice (tokenism vs. real involvement) consumer and carer involvement . ( ) ( ) ( ) what is helpful in recovery-oriented services? experiences of care . ( ) ( ) ( ) peer-led services – what are the gaps? (e.g. support groups) peer to peer ( ) . ( ) . ( ) how to recruit and train peer workers – what is going on, and where? where is it embedded? how are they being supported? peer to peer ( ) ( ) . ( ) mental health in lgbtiq+ populations other ( ) . ( ) . ( ) how is the consumer and carer voice integrated into policy and services? how are their contributions valued, and what indicators exist to demonstrate how their voice is used? services ( ) . ( ) . ( ) how do we expand who is involved? (e.g. young people) consumer and carer involvement ( ) . ( ) . ( ) is medication what we want? side effects, health impacts, alternatives, efficacy, cost-effectiveness medication ( ) ( ) ( ) stigma by health providers (mental health and others) – what do they believe and how does it impact? stigma . ( ) ( ) ( ) are consumers being consulted about their experiences of care? experiences of care . ( ) ( ) . ( ) impact of service delivery on consumers and carers – what contributes to recovery? services ( ) ( ) ( ) what programmes/supports can be devised for reaching individuals that are outside of ndis scope? national disability insurance scheme . ( ) ( ) . ( ) peer support in public mental health system peer to peer . ( ) . ( ) . ( ) accommodation other . ( ) . ( ) . ( ) employment other . ( ) ( ) ( ) support in education settings other . ( ) . ( ) ( ) culturally and linguistically diverse perspectives within mainstream mental health system other . ( ) ( ) ( ) how do individuals adapt to changes in medication that impact lifestyle and quality of life? medication ( ) . ( ) . ( ) training of psychologists – how can consumer perspectives be incorporated? health professionals . ( ) . ( ) . ( ) where do physical health concerns fit into health services when you have mental health problems as a main focus? comorbidity and physical health . ( ) ( ) ( ) discrimination justice . ( ) . ( ) . ( ) how have people who have experienced trauma been cared for? experiences of care . ( ) ( ) . ( ) trauma informed care – why is it important, and how is it integrated into service delivery? services . ( ) ( ) ( ) reach – are services reaching the people that need them? services . ( ) ( ) . ( ) capacity for decision-making/change in legislation and its application; consumer and carer experiences of this. what information is provided about legislation? what support is provided, e.g. legal? legislation . ( ) . ( ) . ( ) to what extent do we follow human rights legislation on mental illness? legislation . ( ) ( ) . ( ) recovery and fulfilling potential other . ( ) . ( ) . ( ) suicide: continuous care and support other . ( ) ( ) ( ) banfield et al. health research policy and systems ( ) : page of table research priority ratings for consumers, carers and consumer/carers (continued) research topic topic area priority ranking (percentage important ratings) consumer carer consumer/carer is care traumatising? experiences of care ( ) ( ) . ( ) consumer and carer journey through service pathways – what works and what doesn’t? what do clinicians think? services . ( ) ( ) ( ) care coordination between mental health and physical health comorbidity and physical health . ( ) ( ) ( ) consumer perspectives on use of labels – which terms are useful/helpful, which are not? language and communication . ( ) ( ) . ( ) mental health in culturally and linguistically diverse populations other . ( ) ( ) ( ) children of people with mental illness other ( ) . ( ) . ( ) awareness and role of gps, e.g. engagement with carers, language and communication skills with consumers and carers services . ( ) . ( ) . ( ) exhaustion and burnout of mental health professionals – impact on service support and delivery health professionals . ( ) ( ) ( ) how many people with mental illness/disability are eligible for ndis support? national disability insurance scheme . ( ) . ( ) ( ) what forms of communication work for consumers and carers? (e.g. older people – less technology familiarity; younger people – social media, smart phones) language and communication . ( ) ( ) ( ) care planning – what makes a good mental health plan? (e.g. individualised, including perspectives of consumers, carers and clinicians) treatment . ( ) ( ) . ( ) transparency of clinical management – how does it respond and interact with consumers and carers? treatment . ( ) ( ) . ( ) what are the experiences of and needs of people coming off medication? how are they being supported? medication ( ) . ( ) ( ) how mental health-aware are gps? health professionals . ( ) ( ) . ( ) what is the role of a gp (perceived and actual) as part of the therapeutic alliance in care of mental health consumers? health professionals . ( ) . ( ) ( ) stigma around borderline personality disorder stigma . ( ) ( ) ( ) stigma as a barrier to consumer involvement stigma . ( ) . ( ) ( ) alternative treatments – what are they, and how can they contribute to recovery? holistic approaches, meditation, exercise treatment . ( ) . ( ) ( ) learned helplessness (experience with services) other . ( ) ( ) . ( ) consumers and carers – who is involved? consumer and carer involvement ( ) . ( ) . ( ) does the stigma in the mental health system worsen outcomes? stigma ( ) . ( ) ( ) what is the effect of caring? carers, family and friends ( ) ( ) . ( ) what sources of information do consumers and carers have faith in? language and communication ( ) ( ) . ( ) how can medications be tailored to the individual? medication . ( ) . ( ) . ( ) criteria for prescribing medications medication . ( ) . ( ) . ( ) what are clinician views on peer support? peer to peer . ( ) ( ) . ( ) risk factors for mental illness other . ( ) . ( ) ( ) how can we get mental health and other health professionals to work together more efficiently? health professionals . ( ) ( ) . ( ) comorbidities and stigma stigma . ( ) ( ) . ( ) what changes do people make in their own lives as a result of stigma? stigma . ( ) . ( ) . ( ) who are the carers and what are they doing? carers, family and friends . ( ) ( ) . ( ) translation of clinical frameworks and guidelines into practice – why is there a disconnect? treatment ( ) . ( ) . ( ) carers and bereavement – are we offering enough counselling? is it timely enough? should it be offered in prisons? carers, family and friends . ( ) ( ) ( ) what is a peer? peer to peer . ( ) ( ) ( ) banfield et al. health research policy and systems ( ) : page of just how far we have to go to have a first class mental health system…” (carer ) in the absence of clear top priorities, to develop initial key areas for future research, a pragmatic decision was taken to examine items rated as important by approxi- mately % or more of participants within a group. across groups, this demonstrated a focus on research topics re- lated to the delivery of services. participants rated topics about the quality of services, problems with services (in- cluding reach, stigma and trauma) and how services im- pact on consumers and carers as priority areas for future research. the ndis (ndis.gov.au) was rated as an im- portant topic for all groups. the ndis is a national australian programme that was trialled in a number of local sites from , and began a national imple- mentation process in . the programme provides government-funded flexible packages of care to aus- tralians with permanent and significant disability, in- cluding psychosocial disability. ndis-related research topics focused on the impact of the ‘definition of psy- chosocial disability’ and ‘supports for people who fall outside the scope’ of the scheme. open-ended responses also had a substantial focus on the problems with services. participants shared concerns about under-resourced, under-staffed services that could be difficult to access, poorly coordinated and poorly implemented. “where i live … it is really difficult to get a care plan in either the hospital or community setting as the staff do not see the value and feel like they haven't got enough time to do things including writing and reading case notes.” (consumer/carer ) table research priority ratings for consumers, carers and consumer/carers (continued) research topic topic area priority ranking (percentage important ratings) consumer carer consumer/carer what support is available when pain is a comorbid condition? how are people experiencing that? comorbidity and physical health . ( ) ( ) . ( ) what is the evidence base linking mental illness with alcohol and other drugs? comorbidity and physical health . ( ) . ( ) . ( ) what kind of support would carers like? carers, family and friends . ( ) . ( ) . ( ) is there such a thing as carer recovery? carers, family and friends . ( ) . ( ) ( ) how do current protocols support consumer and carer journeys to recovery? treatment . ( ) ( ) ( ) how are partners in recovery, personal helpers and mentors, support and clinical management working together? services . ( ) . ( ) ( ) bullying other ( ) ( ) . ( ) trial of primary healthcare nurse within mental health teams – does it improve physical health outcomes? comorbidity and physical health . ( ) ( ) ( ) analysis of stigma according to disorder stigma . ( ) ( ) . ( ) bereavement other ( ) ( ) ( ) how is ‘privacy’ interpreted by health professionals, and does it differ from consumer and carer interpretations? health professionals . ( ) . ( ) ( ) stereotype formation stigma . ( ) ( ) . ( ) insurance other ( ) . ( ) ( ) gender-specific effects of medication medication ( ) ( ) ( ) effects of drug and alcohol use early in life comorbidity and physical health ( ) ( ) . ( ) electroconvulsive therapy – what information is given, does it follow best practice, what are consumers’ experiences? treatment . ( ) ( ) ( ) smoking cessation other . ( ) ( ) ( ) do the public and private sectors work together? consumer and carer experiences services ( ) . ( ) . ( ) pet therapy treatment ( ) . ( ) . ( ) note: items are ranked in descending order of consumer importance rating percentages (from (most frequently rated as ‘important’) to (least frequently rated as ‘important’)). the percentage rankings for the carer and consumer/carer participant groups are provided for comparison. items sharing the same importance rating percentage were assigned a mean rank [ ] gp general practitioners, lgbtiq+ lesbian, gay, bisexual, transgender, intersex or queer, ndis national disability insurance scheme banfield et al. health research policy and systems ( ) : page of http://ndis.gov.au concerns were also raised about the mental health training of health professionals, particularly general practitioners, whether the current approaches of health professionals to diagnosis and care were appropriate, and gaps in services, including gaps created by the im- plementation of the ndis. alongside the focus on problems with services, some participants also highlighted the negative impacts of ser- vices on consumers and carers. participants commented on the negative consequences of compulsory treatment and inadequate, inappropriate or absent services. “i was also treated in quite a paternalistic and demeaning way by [the crisis response] team, hospital staff and other staff around these issues as i was not a family member. the feeling of seeing someone you care for being treated in a completely degrading manner but also realising that no one cares about your voice is very horrible.” (carer ) consumer and carer involvement was also a priority for research, with interest in ‘how involvement works in prac- tice’ and ‘how to expand who is involved’ rated highly, par- ticularly by consumers. comments highlighted the role of active consumer and carer involvement in improving the quality of services and the education of mental health pro- fessionals (including general practitioners and psycholo- gists). participants were interested in determining how to encourage diversity in the consumers and carers involved in shaping services, policy and legislation. “lived experience will really matter to shaping better services, and making sure it's a good cross section of people from various socio-economic backgrounds, genders, ethnicity etc.” (carer ) other topics frequently rated as important across the three groups included the ‘over-representation of mental illness in the justice system’, ‘social inclusion’ and ‘em- ployment’. a small number of participants commented on these topics, emphasising the importance of ensuring people have access to basic needs, including accommo- dation, vocational activities and social support services, and that they received appropriate mental health care if detained in the justice system. despite an overall focus on delivery of services, there were some group differences on the specific topics of interest. consumers frequently rated the implementation and consumer experiences of ‘peer services’ as important topics for research, with four of their top topics on peer-to-peer services. carers most frequently prioritised ‘carer support services’, the ‘reach’ of services and ‘con- tinuous care and support for suicide’. by contrast, con- sumer/carer participants focused on the organisation of care, including ‘care coordination’, ‘care planning’ and ‘transparency of services’. they also prioritised ‘carer recovery’. discussion the current study identified a broad range of topics for future mental health research, reflecting the extent of the perceived gaps in the australian mental health sec- tor. although there were some group differences and no clear priorities emerged in either research study, many topics amongst the highest-rated were in the area of ser- vice organisation and delivery, particularly related to trauma- and recovery-oriented care and peer leadership. the importance of lived experience of mental health is- sues (as a consumer and/or carer) for the development and evaluation of services and policy was also a focus, particularly for survey participants, and across both studies there was interest in research into recovery for consumers and carers. this research both confirms and extends the outcomes of previous consumer and carer mental health research priority-setting exercises. many research priorities devel- oped by participants in study , such as support for transitions between services, medication and alternative treatments [ , ], stigma [ , ], support for carers [ ], and communication with health professionals [ ] are consistent with prior research conducted in other coun- tries. the topic areas of focus, including recovery [ ], service delivery [ ] and the active involvement of con- sumers have also been found previously [ ]. the findings are similarly consistent with previous australian re- search priority-setting work, in which consumers priori- tised research into medication and treatment, effective coping strategies/recovery and quality services [ , ]. however, the topics developed and prioritised across both studies in the current project reflect specific con- temporary issues in these areas. for example, many par- ticipants were aware of international evidence for mental health peer work and the spread of peer services in australia; therefore, their suggested topics were focused on implementation and evaluation of best practice in the australian context, including peer leadership in service delivery. the strong interest by participants in the effect of the recently introduced ndis, particularly regarding how it affects service availability for those ineligible for the scheme, is also a critical area of concern in the aus- tralian system, although the system-level analyses of interest may also have relevance for other countries in europe and north america that have introduced similar broad-ranging changes to the financing and organisation of care for people with long-term disabilities [ ]. the contemporary and nuanced views on research pri- orities demonstrated by consumers and carers, along with the changes in emphasis that occurred in the banfield et al. health research policy and systems ( ) : page of years between studies, highlight the importance of regu- lar updates to priorities that are not confined to rating pre-existing researcher-developed topics. for example, in study of the current research, topics focused on trauma were discussed widely across groups and rated highly by both consumers and carers, albeit by a small number of votes overall. trauma-informed care refers to mental health care which acknowledges the impact of previous psychosocial violence, abuse and trauma on the consumer and is sensitive to these experiences [ ]. however, trauma-related service delivery was not amongst the highest priority topics in the national sur- vey conducted four years after the first study. this may reflect differences in focus across communities. for ex- ample, there may have been a pre-existing emphasis on trauma-informed care within the local act consumer network from which participants were recruited for study . alternatively, this may reflect a recent broader shift in the focus of both service delivery and the con- sumer movement given that the impact of previous trauma on mental ill health has become increasingly well recognised over time [ ]. although participants across both studies embraced the opportunity to develop research topics, the majority of topics were negatively skewed as participants rated most topics as ‘high priority’ overall. participant com- ments in both studies suggested that this reflected the view that everything was equally important. they found it challenging to prioritise some topics over others, com- menting that it was difficult to choose between numer- ous competing priorities. however, it is also possible that a different choice of response style (e.g. forced choice of a limited number; consensus method) may have produced different results. these methods were discussed, but considered less desirable by the acacia advisory group. difficulty selecting priorities is an ob- servation also reported in several previous research priority-setting projects [ , , ]. like the present pro- ject, these projects all enabled participants to independ- ently select, rank or vote for personal research priorities [ , , ]. in contrast, methods that require a small group of participants to make a collective decision about priorities, such as the james lind alliance approach, have produced ranked lists of priorities [ , ]. this dis- crepancy is an important consideration for future priority-setting exercises and suggests that there are a diverse range of research topics of high importance to consumers and carers. this apparent lack of consensus presents a challenge for researchers seeking guidance on where to start in implementing a consumer- and carer-led research agenda. however, within acacia, consumers and carers also provided a solution to this dilemma – they suggested that the breadth of priorities reflects the equal importance of all of the topics developed, and research into any of them will address an important gap in the sys- tem [ ]. consumers and carers have identified what they need mental health research to address; it is now up to re- searchers to work in partnership with consumers and carers to implement the agenda. limitations a potential limitation of this project is that participation in a research process involving researchers and/or mental health professionals can be intimidating for consumer and carer participants and may thereby distort the findings from a priority-setting exercise [ ]. however, we consider this to be unlikely in the current research. forum partici- pants commented on the respectful atmosphere within the forum that contributed to a sense that it was truly consumer- and carer-led, or as one participant commen- ted in an evaluation form “…acknowledging our capacity to be researchers, not just be researched”. participants also remarked in their evaluation forms that the opportunity to discuss their ideas and experiences with other consumers and carers was highly valued. due to the large number of items employed, the mod- est participant sample size in the survey study was not sufficient to conduct inferential statistical comparisons between the consumer, carer and consumer/carer prior- ity ratings. however, the sample size was comparable to previous priority-setting projects with similar method- ologies [ , , ]. additionally, there were a number of characteristics of the sample that may preclude the gen- eralisability of the results, namely ( ) the sample self-selected to participate, meaning that the survey may represent the views of those already active in the con- sumer and carer advocacy spheres, ( ) the sample was predominantly female ( %), ( ) had an uneven geo- graphical distribution, and ( ) % of participants fell into the consumer-only category. recruitment of a di- verse sample in future studies may be facilitated by visit- ing relevant community spaces and engaging with targeted community groups, effectively taking the re- search to the participants [ , ]. drop-out across the survey, potentially due to participant fatigue, reduced the information available about research topics pre- sented late in the survey (additional file ). randomisa- tion of item order may effectively manage this issue in future research. although the survey study was developed from the findings of the qualitative study, the research project was not explicitly planned as a two-stage process. the sec- ond study to attempt to set clearer priorities and update the agenda using a survey was discussed with the aca- cia advisory group on multiple occasions following study , with mixed support [ ]. the decision to con- duct study and develop the survey directly from the forum findings was driven by the advisory group in banfield et al. health research policy and systems ( ) : page of , who felt the agenda needed to be updated but the original topics preserved. developing a survey directly from qualitative work has been a highly successful process in past research conducted by the authors [ ]; however, the -year gap between studies for the current project and the more specific nature of many of the items compared with previous research may have af- fected the ease of interpretation of items due to changes in the mental health system in the intervening time. in both studies, comments indicated that participants found it difficult to prioritise topics as they perceived most to be equally important or as connected to each other. this precluded meaningful analysis of the ranking data and limited the conclusions that could be drawn about clear priorities. future studies should consider al- ternative methods to improve consensus; however, it is important that decisions on methods are reached collab- oratively with consumers and carers to ensure they are acceptable and avoid reaching misleading conclusions as a result of forced choice. conclusion consumers and carers consider many topics important targets for research, suggesting a strong understanding of the australian mental health system and its failures as discussed in a recent commentary [ ]. consistent with this, in the current study, topics focused on services, particularly the organisation and delivery of care, were seen by consumers and carers as some of the most im- portant on which to focus. people with a lived experi- ence of mental health issues are ideally placed to identify inadequacies in the mental health care system, and have a strong desire for active involvement in addressing these challenges. there is a need to engage in an on- going research partnership with consumers and carers to ensure that their views are at the forefront of research, and to regularly update research agendas to ensure they are responsive to current consumer and carer priorities. taking this collaborative approach will move mental health internationally to the forefront of co-designed and co-delivered health systems. additional files additional file : forum procedure and prompt list. (docx kb) additional file : forum consumer, carer and consumer/carer votes on topics and areas for research. (docx kb) additional file : priority-setting survey. (pdf kb) abbreviations acacia: the australian capital territory consumer and carer mental health research unit; act: australian capital territory; anu: australian national university; cmhr: centre for mental health research; ndis: national disability insurance scheme acknowledgements the authors would like to acknowledge the acacia advisory group and the generous contributions of the participants in acacia research. we would also like to thank owen forbes, rebecca randall and mearon o’brien who contributed to the collection of data and early manuscript drafts. funding this research was supported by act health (contracts . . to kg and . . to mb). at the time of undertaking the research, mb was supported by australian research council discovery early career researcher award de and kg was supported by national health and medical research council senior research fellowship . the funding bodies played no role in data collection, analysis or preparation of the manuscript. availability of data and materials data generated or analysed during the forum are included in this published article and its supplementary information files. the survey dataset is available from the corresponding author on reasonable request. authors’ contributions mb co-conceived and designed the research, collected data and conducted analyses for both studies and drafted the manuscript. arm collected and analysed study data, drafted results and edited the manuscript. ag collected study data, contributed to analyses and edited the draft manuscript. kg co-conceived and designed the research, collected and analysed study data and edited the manuscript. all authors reviewed and approved the final manuscript. ethics approval and consent to participate the ethical aspects of the study were approved by the anu human research ethics committee (protocol number / ). all participants provided written or online informed consent. consent for publication not applicable. competing interests the authors declare that they have no competing interests. publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. author details centre for mental health research, the australian national university, eggleston rd, acton, act , australia. research school of psychology, the australian national university, acton, australia. received: june accepted: november references . caldon ljm, marshall-cork h, speed g, reed mwr, collins k. consumers as researchers – innovative experiences in uk national health service research. int j consum stud. ; : – . . banfield ma, barney lj, griffiths km, christensen hm. scope for research: mental health consumers’ priorities for research compared with recent research in australia. aust n z j psychiatry. ; ( ): – . . banfield ma, barney lj, griffiths km, christensen hm. australian mental health consumers’ priorities for research: qualitative findings from the scope for research project. health expect. ; : – . . griffiths km, jorm af, christensen h, medway j, dear kb. research priorities in mental health, part : an evaluation of the current research effort against stakeholders’ priorities. aust new zealand j psychiatry. ; ( ): – . . griffiths km. promoting consumer participation in mental health research: a national workshop. canberra: centre for mental health research, the australian national university; . . griffiths km, jorm af, christensen hm. academic consumer researchers: a bridge between consumers and researchers. aust n z j psychiatry. ; ( ): – . banfield et al. health research policy and systems ( ) : page of https://doi.org/ . /s - - - https://doi.org/ . /s - - - https://doi.org/ . /s - - - . robotham d, wykes t, rose d, doughty l, strange s, neale j, hotopf m. service user and carer priorities in a biomedical research centre for mental health. j ment health. ; ( ): – . . rose d, fleischman p, wykes t. what are mental health service users’ priorities for research in the uk? j ment health. ; ( ): – . . national health and medical research council & consumers health forum: statement on consumer and community participation in health and medical research. canberra: commonwealth of australia; . . hancock n, bundy a, tamsett s, mcmahon m. participation of mental health consumers in research: training addressed and reliability assessed. aust occup ther j. ; ( ): – . . wykes t, haro jm, belli sr, obradors-tarragó c, arango c, ayuso-mateos jl, bitter i, brunn m, chevreul k, demotes-mainard j, et al. mental health research priorities for europe. lancet psychiatry. ; ( ): – . . james lind alliance. priority setting partnerships. http://www.jla.nihr.ac.uk/ priority-setting-partnerships/. accessed nov . . happell b, roper c. consumer participation in mental health research: articulating a model to guide practice. australas psychiatry. ; ( ): – . . banfield m, randall r, o’brien m, hope s, gulliver a, forbes o, morse ar, griffiths k. lived experience researchers partnering with consumers and carers to improve mental health research: reflections from an australian initiative. int j ment health nurs. ; ( ): – . . braun v, clarke v. using thematic analysis in psychology. qual res psychol. ; ( ): – . . patton mq. qualitative evaluation and research methods. nd ed. thousand oaks: sage publications, inc.; . . maley t. participatory budgeting and the radical imagination: in europe but not in canada? affinities. ; ( ): – . . tabachnick bg, fidell ls. using multivariate statistics, international edition. th edn. upper saddle river, nj: allyn & bacon/pearson education; . . howell dc. statistical methods for psychology. th ed. belmont: thomas wadsworth; . . ritchie j, spencer l. qualitative data analysis for applied policy research. in: bryman a, burgess b, editors. analyzing qualitative data. london: routledge; . p. – . . owens c, ley a, aitken p. do different stakeholder groups share mental health research priorities? a four-arm delphi study. health expect. ; ( ): – . . williams tm, smith gp. can the national disability insurance scheme work for mental health? aust new zealand j psychiatry. ; ( ): – . . muskett c. trauma-informed care in inpatient mental health settings: a review of the literature. int j ment health nurs. ; : – . . reeves e. a synthesis of the literature on trauma-informed care. issues mental health nurs. ; ( ): – . . griffiths km, mendoza j, carron-arthur b. whereto mental health reform in australia: is anyone listening to our independent auditors. med j aust. ; ( ): – . banfield et al. health research policy and systems ( ) : page of http://www.jla.nihr.ac.uk/priority-setting-partnerships/ http://www.jla.nihr.ac.uk/priority-setting-partnerships/ 	abstract 	background 	method 	results 	conclusions 	introduction 	study : discussion forum 	method 	participants 	procedure 	analysis 	results 	participants 	research priorities 	study : priority-setting survey 	method 	participants 	procedure 	analysis 	results 	participants 	research priorities 	discussion 	limitations 	conclusion 	additional files 	abbreviations 	acknowledgements 	funding 	availability of data and materials 	authors’ contributions 	ethics approval and consent to participate 	consent for publication 	competing interests 	publisher’s note 	author details 	references [pdf] pilot study of veterinary student mindset and association with academic performance and perceived stress. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /jvme. - r corpus id: pilot study of veterinary student mindset and association with academic performance and perceived stress. @article{kustritz pilotso, title={pilot study of veterinary student mindset and association with academic performance and perceived stress.}, author={m. r. root kustritz}, journal={journal of veterinary medical education}, year={ }, volume={ }, pages={ - } } 	m. r. root kustritz 	published 	medicine 	journal of veterinary medical education individuals with a growth mindset believe that all failures are opportunities and that their baseline intelligence and talent can be used for continuous improvement. individuals with a fixed mindset believe that baseline intelligence and talent cannot be developed. a growth mindset is associated with greater academic success and greater resilience in the face of failure or stress. second-year veterinary students completed three surveys to determine mindset, perceived levels of stress, and life… expand view on pubmed vetmed.umn.edu save to library create alert cite launch research feed share this paper citationshighly influential citations background citations results citations view all topics from this paper 	stress management 	veterinary medicine (discipline) 	coping behavior 	academic achievement 	coping skills 	menopause 	glycophorin a 	climacteric citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency mindset and its relationship to anxiety in clinical veterinary students 	r. bostock, t. kinnison, s. may 	psychology, medicine 	veterinary record 	 	 	pdf save alert research feed a review to characterise and map the growth mindset theory in health professions education 	michael d wolcott, jacqueline e. mclaughlin, + authors m. zomorodi 	psychology, medicine 	medical education 	 	 	view excerpts save alert research feed genealogies of affect among a young veterinarian's public letter : an exploratory study of hidden curricula in a college of veterinary medicine 	tamara s. hancock 	psychology 	 	highly influenced 	view excerpts, cites background save alert research feed northern illinois university stress in the veterinary medical field: a literature review a capstone submitted to the university honors program in partial fulfillment of the requirements of the baccalaureate degree with honors department of biological sciences by 	taylour k. erickson 	 	highly influenced 	view excerpts, cites background and results save alert research feed references showing - of references sort byrelevance most influenced papers recency stress in chiropractic education: a student survey of a five-year course. 	h. hester, c. cunliffe, a. hunnisett 	medicine 	the journal of chiropractic education 	 	 	 save alert research feed veterinary medical student well-being: depression, stress, and personal relationships. 	mcarthur hafen, g. c. ratcliffe, b. rush 	psychology, medicine 	journal of veterinary medical education 	 	 save alert research feed relationships between learning strategies, stress, and study success among first-year veterinary students during an educational transition phase. 	j. laakkonen, anne nevgi 	psychology, medicine 	journal of veterinary medical education 	 	 save alert research feed stress management interventions for veterinary students. 	s. gelberg, h. gelberg 	medicine 	journal of veterinary medical education 	 	 save alert research feed emotions in veterinary surgical students: a qualitative study. 	r. langebæk, b. eika, lene tanggaard, a. l. jensen, m. berendt 	psychology, medicine 	journal of veterinary medical education 	 	 save alert research feed veterinary students’ perceptions of their learning environment as measured by the dundee ready education environment measure 	jacquelyn m pelzer, j. hodgson, s. werre 	medicine 	bmc research notes 	 	 	 save alert research feed monitoring the veterinary medical student experience: an institutional pilot study. 	r. miller, b. mavis, j. lloyd, c. grabill, r. henry, coretta c patterson 	medicine 	journal of veterinary medical education 	 	 save alert research feed assessment of burnout in veterinary medical students using the maslach burnout inventory-educational survey: a survey during two semesters 	m. chigerwe, karen a. boudreaux, j. ilkiw 	medicine 	bmc medical education 	 	 	 save alert research feed veterinary students as elite performers: preliminary insights. 	dan zenner, gilbert a burns, kathleen l ruby, r. debowes, sharon stoll 	psychology, medicine 	journal of veterinary medical education 	 	 save alert research feed a study of depression and anxiety, general health, and academic performance in three cohorts of veterinary medical students across the first three semesters of veterinary school. 	allison m. j. reisbig, jared a danielson, + authors jessica garlock 	medicine 	journal of veterinary medical education 	 	 save alert research feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue 	
   exploring occupational therapists’ views about nussbaum’s central human functional capabilities: an exploratory sequential mixed methods study by seyedeh tahmineh mousavi b.sc. (occupational therapy), iran medical science university, m.a. (history and philosophy in religion), concordia university, a thesis submitted in partial fulfillment of the requirements for the degree of doctor of philosophy in the faculty of graduate and postdoctrol studies (rehabilitation sciences) the university of british columbia (vancouver) february ©seyedeh tahmineh mousavi, 	
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   abstract background: the st century marks a shift in the perspective of care of people with disabilities with greater attention to individual human rights. an innovative approach related to human rights that provides a basis for conceptualizing and framing the rights of people with disabilities, is the capability or capabilities approach. developed by sen and extended by nussbaum, the approach advocates that fundamental human rights can be viewed as claims to certain basic capabilities. nussbaum has proffered ten so-called central human functional capabilities (chfcs). objective: to explore the views of canadian occupational therapists (ots) related to the chfcs and their understanding and perceived relevance, with respect to their professional practice. methods: an exploratory sequential mixed methods design including an initial qualitative phase that informed a subsequent quantitative phase. phase one consisted of semi-structured interviews with ots (n= ) in british columbia, canada. the findings from phase one generated categories with themes and sub-themes. these findings informed the development of a questionnaire to survey canadian ots, nationally. a cross-sectional survey, registered with the canadian association of occupational therapists was conducted in phase two to determine the applicability of phase one findings about the chfcs to a broader group of ots from across canada. the survey was hosted at the website fluid surveys®. we sampled ots with a response of ( %). results: respondents understood the chfcs as reflecting occupational therapy values. they perceived the chfcs as relevant and consistent with established models of and approaches to occupational therapy practice including professionally-valued constructs of human rights and social justice as well as health and client-centered care. conclusion: these findings unify and advance the conceptual bases for occupational therapy models and approaches by enabling ots to better fulfill their professional mandate of addressing their clients’ needs from an overarching human rights perspective. importantly, these results align occupational therapy services with client-centered practice, and human rights initiatives of the united nations and world health organization. our findings could be used by other health professions and across cultures to establish whether the capabilities approach is applicable across professional practices and health services. 	
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   preface this research was approved by the university of british columbia, behavioral research ethics board (reference number: h - ) on february , . i conceived the project described in these chapters, designed the study and analyzed and interpreted the findings with the guidance of drs. elizabeth dean, susan forwell, and shafik dharamsi. specific chapters of this dissertation are in preparation for publication. all chapters have multiple authors. 	
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   table of contents abstract ........................................................................................................................ ii preface .......................................................................................................................... iii table of contents ................................................................................................. iv list of tables ............................................................................................................ ix list of abbreviations ............................................................................................ x acknowledgements ............................................................................................. xi dedication .................................................................................................................. xii introduction, literature review, and rationale for the thesis ..... . introduction ............................................................................................................. . literature review .................................................................................................... . . practical rehabilitation service approaches .................................................... . . capabilities approach ..................................................................................... . rationale for the thesis ........................................................................................ . thesis chapters ..................................................................................................... methodology ...................................................................................................... . study design ......................................................................................................... . . purpose of statement ...................................................................................... . . research questions ......................................................................................... . . mixed methods design ................................................................................... . . exploratory sequential mixed methods design ............................................. . overview of the research phases ......................................................................... the views of occupational therapists about the central human functional capabilities with respect to their profession and practice: a qualitative study ........................................................................................................ . study design ......................................................................................................... . . interpretive descriptive .................................................................................. . . reflexivity and researcher positionality ........................................................ 	
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   . . selected sampling ........................................................................................... . . qualitative phase recruitment ........................................................................ . . description of participants .............................................................................. . data collection ..................................................................................................... . . semi-structured interviews ............................................................................. . . designing the interview questions ................................................................. . . conducting the interviews .............................................................................. . data analysis ......................................................................................................... . . conducting thematic analysis ....................................................................... . . trustworthiness .............................................................................................. . findings .................................................................................................................. . . life capability ................................................................................................ . . bodily health capability ................................................................................. . . bodily integrity .............................................................................................. . . senses, imagination, and thought capability ............................................... . . emotions ........................................................................................................ . . practical reason ............................................................................................. . . affiliation ....................................................................................................... . . other species ................................................................................................. . . play .............................................................................................................. . . control over one’s environment ............................................................... . . general views of central human functional capabilities ........................ . limitations and delimitations ............................................................................. . summary ............................................................................................................. . table ................................................................................................................... the views of occupational therapists about the central human functional capabilities with respect to their profession and practice: online survey .............................................................................................................. . study design ....................................................................................................... . . research questions ...................................................................................... . . sampling ...................................................................................................... 	
   vi	
   . survey development ........................................................................................... . . validity ......................................................................................................... . . survey design .............................................................................................. . survey procedure ................................................................................................ . data analysis ...................................................................................................... . survey results .................................................................................................... . . demographic information ............................................................................. . . occupational therapists’ views of central human functional capabilities .................................................................................................................................... . limitations and delimitations ............................................................................. . summary ............................................................................................................. . tables ................................................................................................................... discussion, implications, and conclusion ............................................... . participant description ........................................................................................ . discussion of findings in relation to the capabilities approach literature ..... . . occupational therapists’ views of life capability .................................... . . occupational therapists’ views of bodily health capability .................... . . occupational therapists’ views of bodily integrity capability ................. . . occupational therapists’ views of senses, imagination, and thought capability .................................................................................................................. . . occupational therapists’ views of emotion capability ............................. . . occupational therapists’ views of practical reason capability ................ . . occupational therapists’ views of affiliation capability .......................... . . occupational therapists’ views of other species capability ..................... . . occupational therapists’ views of play capability .................................... . . occupational therapists’ views of control over ones environment capability .................................................................................................................. . . occupational therapists’ general views of the central human functional capabilities ............................................................................................................... . discussion of findings in relation to the occupational therapy literature ....... . . central human functional capabilities as a client-centered approach ..... 	
   vii	
   . . central human functional capabilities as a human rights model ............ . . central human functional capabilities as a framework for health and well- being .......................................................................................................................... . . central human functional capabilities as a social justice approach and advocacy perspective ............................................................................................... . discussion of findings in relation to the occupational science literature ...... . study strengths and limitations ......................................................................... . implications ......................................................................................................... . . implications for theory and practice ........................................................... . . implication for policy makers ..................................................................... . . implication for further research ................................................................. . further insights ................................................................................................... . concluding thoughts .......................................................................................... . table .................................................................................................................... references ......................................................................................................................... appendices ..................................................................................................................... appendix a: description of the occupational therapy profession ................................. appendix b: interview guide ........................................................................................... appendix c: consent form .............................................................................................. appendix d: analytic memo ............................................................................................ appendix e: the thematic map for emotions capability ............................................... appendix f: example of how themes within subsamples were identified ................... appendix g: online survey .............................................................................................. appendix h: cover email ................................................................................................ appendix i: participants’ written quotes about life capability .................................... appendix j: participants’ written quotes about bodily health capability .................... appendix k: participants’ written quotes about bodily integrity capability ................. appendix l: participants’ written quotes of sense, imagination, and thought capability ............................................................................................................................................ appendix m: participants’ written quotes about emotion capability ............................ 	
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   appendix n: participants’ written quotes about practical reason capability ................ appendix o: participants’ written quotes about affiliation capability .......................... appendix p: participants’ written quotes about other species capability ..................... appendix q: participants’ written quotes about play capability ................................... appendix r: participants’ written quotes of control over one’s environment capability ............................................................................................................................................ appendix s: participants’ written quotes about the central human functional capabilities ....................................................................................................................... 	
   ix	
   list of tables table . phase one participants’ description ................................................................. table . survey response rate ...................................................................................... table . personal demographic information .................................................................. table . location demographic information ................................................................. table . practice demographic information ................................................................... table . occupational therapists’ views of life capability ......................................... table . occupational therapists’ views of bodily health capability ......................... table . occupational therapists’ views of bodily integrity capability ...................... table . occupational therapists’ views of sense, imagination, and thought capability ............................................................................................................................................ table . occupational therapists’ views of emotions capability ................................. table . occupational therapists’ views of practical reason capability ................... table . occupational therapists’ views of affiliation capability ............................. table . occupational therapists’ views of other species capability ........................ table . occupational therapists’ views of play capability ....................................... table . occupational therapists’ views of control over one’s environment ........... table . occupational therapists’ general views of the central human functional capabilities ....................................................................................................................... table . comparison of themes between phase one and phase two ......................... table . central human functional capabilities: determinants, and implication in relation to occupation ...................................................................................................... 	
   x	
   list of abbreviations caot canadian association of occupational therapists chfcs central human functional capabilities cihi canadian institute for health information ot occupational therapist (except where the abbreviation ot(s) was/were used in quotations by participants to mean either occupational therapy or occupational therapist(s)) qol quality of life 	
   xi	
   acknowledgements i would like to thank a number of people for their love and support. i wish to express my deep gratitude to all participants who shared their time, thoughts, and valuable experiences with me. i am thankful to my supervisory committee for guiding me through this process. i owe a special thank you to my principal advisor, dr. elizabeth dean, whom i regard as a great mentor and friend. thank you for your guidance and your continuous support over the years. thank you to dr. susan forwell for acting as my co-supervisor. your experience, intellectual feedback and thoughtful comments were extremely valuable. i would like to thank dr. shafik dharamsi, as member of my thesis committee, for their ongoing support, keen insights, and helpful advice; you have enriched the learning process through your questioning and engagement in the qualitative discussions. thank you all for your willingness to join me on this journey. i owe my sincere gratitude to my colleagues at ubc, dr. regina casey, dr. mineko wada, dr. shalini lal, dr. hana al-bannay, and dr. setareh ghahari, who shared their thoughts and experience, and provided me with valuable feedback. my deepest thanks go to my husband, hossein houshmand, who first gave me the idea of the “capabilities approach” and the motivation for this project, and provided support in numerous ways. without you, none of this would have been possible. i would like to thank my parents, brothers, and sisters, with all my heart, for their love and never ending support. finally, i would like to thank my children, ali and ibrahim, for the joy and happiness they bring into my life. 	
   xii	
   dedication to my mom, dad, and hossein for all their love and support 	
   	
   introduction, literature review, and rationale for the thesis . introduction disability has been described as “the most urgent problem of social justice” (nussbaum, , p. ). the link between disability and social exclusion is strong. people with disabilities are more likely to experience social and economic deprivation than able-bodied people. children with disabilities are much less likely to be literate and more vulnerable to being malnourished and dying prematurely. people with disabilities are less likely to be employed; women with disabilities are vulnerable to physical violence and sexual abuse (quinn et al., , turmusani, ; uk department for international development (dfid) report, ; barnes, ; beresford, ). the extension of human rights to people with disabilities on the basis of equality with people who are able-bodied is a compelling perspective that provides a rational means of improving the lives of people with disabilities. this extension of human rights to meeting the needs of people with disabilities from the perspective of health care practice, specifically, rehabilitation services, is novel. a variety of rehabilitation services has been implemented globally to respond to the needs of over million people with disabilities in the world today. according to the literature, the four established models for rehabilitation service delivery include the biomedical model, community- based rehabilitation, independent living, and client-centered rehabilitation (mccoll et al., ). rehabilitation service delivery from the biomedical model tends to view disability as a problem at the level of the individual, and defines disability in terms of impairments. impairments are associated with a variety of medical needs for people with disabilities, and specialized expertise is needed to recognize and respond to these needs (bickenbach, ). the biomedical model in providing rehabilitation services depends upon “trained professionals and well-equipped facilities” (mccoll et al., , p. ). this model has been criticized however on the grounds that many dimensions of disability are absent (oliver, , ; marks, ; williams, ; shakespeare, , ; mclean & williamson, ). community-based rehabilitation has emerged in developing countries as an effective and efficient method of providing rehabilitation services to people with disabilities globally over the last twenty-five years. community-based rehabilitation is a model of community development designed to empower people with disabilities within their communities (peat, ; mitchell, 	
   	
   ; kendall et al., ). in community-based rehabilitation, intervention has shifted from institutions to homes and communities, and is carried out by families and community programs. interventions associated with community-based rehabilitation include education, vocational training, social rehabilitation, and prevention (peat, , p. ). community-based rehabilitation has been considered as a strategy “for equalization of opportunities and social integration of all people with disabilities” (international labour organization, united nations, educational scientific and cultural organization, united nations children’s funds, world health organization, , p. ). community-based rehabilitation is implemented through “the combined efforts of people with disabilities themselves, their families and communities, and the appropriate health, education, vocational and social services" (international labour organization, united nations, educational scientific and cultural organization, world health organization, , p. ). independent living and client-centered rehabilitation reflect new attitudes toward rehabilitation service delivery. one of the philosophical assumptions in these models of rehabilitation services is that each person is of considerable and unconditional worth, each having the capacity to determine his or her destiny (mccoll et al., ). in the independent living model, people with disabilities are described as being handicapped by society’s failure to provide appropriate services to facilitate their full participation in society. therefore, restrictions imposed by society, such as social attitudes and barriers, create the disability (williams, , p. ). the independent living model views people with disabilities as equal members in society who “are demanding the right to take the same risks and seek the same rewards” (brisenden, , p. ). this model does not view disabilities as deficits, but rather as conditions of life. the independent living model advocates that “individuals are disabled by inaccessible buildings, lack of access to education, unemployment, and hostile attitudes” (mccoll et al., , p. ). further, the independent living model views people with disabilities as “rational, informed consumers of the service” (p. ). for the most part, they are able to control the resources that affect their lives and are able to make informed choices about their needs. the independent living model aims to ensure that people with disabilities have access to housing, health care, transportation, employment, education, and mobility so they can participate in life fully (mccoll et al., ). 	
   	
   in client-centered rehabilitation, “the clients know what they want from therapy and what they need” (law, , p. ). in other words, they are the experts on their service needs, and can make choices and have control over all available service delivery (mccoll et al., ). rehabilitation therapists are viewed as facilitators who create an environment to assist change, enhance self-esteem, and promote independence and empowerment of people with disabilities (law, ; mccoll et al., ). in canada, the occupational therapy profession is an established rehabilitation profession that is committed to client-centered services (canadian association of occupational therapists [caot], , ; law, ). the profession focuses on maximizing clients’ capacity for complete physical, social and emotional functioning in all domains of their lives, which is referred to as their capacity to engage in their life occupations (more broadly defined than gainful employment). the profession of occupational therapy and its established competencies are described in appendix a. client-centered practice within the context of client- centered services has been advanced as a guide for occupational therapists (ots) since the s (law, ). despite the emphasis on client-centered practice, some barriers have been identified at the client, therapist and organizational levels (law et al., ; sumsion & smyth, ). implementing strategies to determine barriers to client-centered practice has been advised by various scholars (sumsion, ; sumsion & smyth, ; wilkins et al., ; restall & ripat, ). at the level of the therapist, education to enhance knowledge and understandings about the meaning of client-centered philosophy has been advocated. it has been suggested however that the skills of such health practitioners are often inadequate to practice fully in a client-centered manner (wilkins et al., ). client-centered practice has been criticized at a number of levels. one criticism has been based on the ambiguity of its principles and the challenges regarding the ethical notion of autonomy. the core value of client-centered practice is patient’s autonomy (law, baptiste, & mills, ; law, ). although patients' rights and autonomy can provide the foundation for ethical decision making in rehabilitation practice (kerkhoff et al., ; brockett & bauer, ), it has been challenged in terms of coming “into conflict in situations of actual practice” (kruse, , p. ). zeidman ( ) questions the neutrality view in client-centered practice: “whether or not neutrality is a laudable goal, it is not possible to achieve. in fact, when we utilize the services of professionals, we expect and demand the benefits of their training, 	
   	
   experience, wisdom and advice” (p. ). some investigators argue that health professionals have to not only consider the autonomy principle, but also the beneficence, nonmaleficence and justice principles in order to have an active role in ethical decision-making, rather than a passive role (atwal & caldwell, ). scott ( ) in “professional ethics: a guide for rehabilitation professionals” believed although these principles needed in caring for patients and could serve as a practical guide for health care practice, the implementation of these guiding principles appears challenging because there are “significant actual and potential conflicts of interests” (p. ). one case in point where such conflict would exist, is confronting an individual verbalizing suicidal thoughts, and the role and responsibilities of health professionals. although community-based rehabilitation, independent living and client-centered models are distinct with respect to how they frame the provision of rehabilitation services, these models are similar in that they view people with disabilities as those with rights rather than impairments. broadly speaking, in the st century, people and increasingly those receiving health services are becoming aware of their rights and demanding these be respected. similar to other health service providers, ots may better fulfill their professional mandate by having a solid understanding of their clients’ human rights and needs in order to provide appropriate services for their clients in a rational and reasoned manner. one approach related to human rights that may provide a meaningful basis for conceptualizing the rights of people with disabilities is the capability or capabilities approach , otherwise known as the “human development approach” (nussbaum, , p. ). this approach, developed by sen and extended by nussbaum has been recognized as an important theory for analyzing “women’s human rights, the rights of people who are poor and more recently, the rights of people with disabilities” (p. ). the capabilities approach has been included in the 	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
   sen typically uses the term capability approach, but nussbaum uses the term capabilities approach. amartya sen ( - ), an indian economist and philosopher, who was winner of the nobel prize in economics. he is lamont university professor and professor of economics and philosophy at harvard university. martha nussbaum ( - ), an american philosopher, with a particular interest in ancient philosophy, law and ethics. during the s nussbaum began collaboration with economist amartya sen on issues of development and ethics. with sen, she promoted the "capability approach" to development. she is currently ernst freund distinguished service professor of law and ethics at the university of chicago. 	
   	
   annual human development reports of the united nations development program and has been reported by over national human development reports since (robeyns, ; nussbaum, ). aligning the value of human development and its constructs such as those articulated by nussbaum could provide a meaningful and useful approach in health care, in particular, rehabilitation. . literature review . . practical rehabilitation service approaches this section reviews three principal approaches to the provision of rehabilitation services for people with disabilities, namely, the biomedical, social, and socio-political (otherwise known as human rights) approaches. in the early twentieth century, rehabilitation services for people with disabilities were dominated by the biomedical approach. in the late twentieth century, the social approach to rehabilitation services dominated. in recent years, with the contemporary disability rights movements inspired by the universal declaration of human rights, the human rights approach to rehabilitation services has emerged. biomedical approach during the nineteenth century, people with disabilities were often ostracized in society and housed in institutions including shelters, hospitals and workhouses. such practices continued well into the twentieth century (braddock & parish, ). over the past century, the biomedical definition of disability emerged. according to the world health organization ( ), disability within the biomedical approach is defined as a problem at the level of the individual that is directly caused by a disease or some other health condition “which requires medical care provided in the form of individual treatment by professionals” (mclean & williamson, , p. ). the essence of disability in the biomedical approach is that people with disabilities are abnormal or have something wrong with them (bickenbach, ; mccoll & bickenbach, ). in this approach, disability is understood as sickness, and people with disabilities tend to be considered as invalids (hughes, , p. ). people are regarded as disabled on the basis of 	
   	
   being unable to function as “normal” people (marks, , p. ; mclean & williamson, , p. ). the normal-abnormal dichotomy is the basis of the biomedical approach which is problematic in the context of disability. accordingly, this dichotomy is not unbiased but is associated with normality being related to “virtuousness”, and abnormality with guilt and “shame” (mclean & williamson, ). therefore, when impairment is negatively construed, people with disabilities are subjected to negative social responses (shuttleworth & kasnitz, ). in this approach, disability is viewed as “a defect inherent in the individual” and people with disabilities are regarded as “defective” rather than physically different (bickenbach, , p. ). since disability is associated with illness or impairment, people with impairments may be viewed as needing correction (mccoll & bickenbach, ). finally, the biomedical approach depends on “trained professionals and well-equipped facilities” (mclean & williamson, ; mccoll et al., , p. ). early on, the biomedical approach to rehabilitation services referred to the international classification of impairments, disabilities and handicaps (icidh). the icidh developed by the world health organization as an international instrument for the purpose of classifying problems or functional incapacity (world health organization, ). the icidh distinguished between the terms “disability,” “handicap,” and “impairment”. it defined impairment as an anatomical, mental, or psychological loss, or some other abnormality. a disability was any restriction or lack of ability to perform an activity in the manner or within the range considered normal. a handicap was a disadvantage resulting from impairment or disability. consequently, the icidh gave substantial authority to rehabilitation professionals and disempowered people with disabilities by professionalizing disability. several advantages and disadvantages underlie the biomedical approach to the provision of rehabilitation services. the advantage of this approach is that it is reasonable for rehabilitation professionals to identify the essential goals for their patients. in other words, this approach can be considered as the basis for “diagnosing disability, influencing treatments, and guiding access to disability benefits” (herr et al., , p. ). the disadvantage is that this approach fails to reflect a comprehensive view of disability. scholars and disability advocates have argued that disability is more than impairment. in their perspectives, people with disabilities experience greater disability as a result of negative attitudes and social and environmental barriers than from functional losses. consequently, this approach has not only been criticized on the grounds that it imparts considerable power to medical professionals, 	
   	
   disempowers people with disabilities, and depends on experts, but also because many dimensions of disability, such as social, economic, and cultural, are absent (liachowitz, ; oliver, , ; longmore, ; williams, ). social approach over the latter part of the last century, the social definition of disability emerged in industrial countries. the construct of disability within the social approach is largely associated with social oppression and barriers (oliver, ). disability is not strictly associated with impaired body parts, but rather with addressing an oppressive social environment. if disability is associated with social oppression, then people with disabilities can be viewed as “the collective victims of an uncaring, discriminatory society” (williams, , p. ). in this view, society and its institutions through legislation, and social attitudes and barriers are thought to create disability. therefore, society’s failure to provide appropriate services potentially may exclude certain people, hence, disable them. from the perspective of the role of the social environment in creating disability, rehabilitation services have a primary role in addressing social and environment challenges and removing barriers. the social approach to rehabilitation services is inherent in the independent living and community-based rehabilitation models, which have emerged from critiques of rehabilitation services based on the biomedical approach (batavia & mcknew, ; lysack & kaufert, ). despite their common beginnings, these models have distinct historical contexts and, in turn, distinct underlying social and political conditions. the independent living model emerged in response to a need to remove social and environmental barriers to living independently, for working-age people with disabilities in the united states in the early s (batavia & mcknew, ; lysack & kaufert, ). the independent living model aimed to ensure people with disabilities had access to housing, health care, transportation, employment, and education, and could be mobility. these aims were achieved through self-help and peer support, research and service development, and referral and advocacy (mccoll et al., ). community-based rehabilitation was introduced by the world health organization at the alma-alta conference in and arose in developing countries in response to the lack of financial resources and experts (lysack & kaufert, ). one of the assumptions of community-based rehabilitation was that improving the quality of life in a limited way for all 	
   	
   people with disabilities is superior to greatly improving the quality of life for a few people. therefore, community-based rehabilitation attempts to make services accessible to more people with disabilities and their families in the most cost-effective and culturally appropriate ways (miles, ; mccoll et al., ; peat, ; mitchell, ; kendall et al., ; turmusani et al., ). compared to the biomedical approach, the social approach may better describe the experiences of people with disabilities, and help elucidate deficiencies of the biomedical model in relation to people with disabilities. several disadvantages underlie the social approach to the provision of rehabilitation services. first, a common criticism is that it neglects the role of impairment. the social approach distinguishes between the impairments that people have and the oppression, which they experience (shakespeare & watson, ). the distinction between impairment and disability is central to the social approach (shakespeare, ). impairment itself is relevant to many people with disabilities. impairment can cause pain and difficulties that are not solely attributable to disabling factors in society. second, in some cases, even when environments are accessible and there is no unfair discrimination on the basis of disability, many people with disabilities would still be disadvantaged (p. ). third, the social approach cannot respond to the complete range of “special needs” of people with disabilities. needs vary among people with disabilities. some people need more than others in their societies given they have different capabilities and limitations. fourth, fully accessible and barrier-free facilities are a central goal of the social approach, but there are challenges to creating a fully accessible society. therefore, ‘a barrier-free’ society may appear to some as a utopian ideal. socio-political approach: human rights approach the paradigm shift in disability policy from the biomedical to the human rights approach of disability is reflected in the united nations convention on the rights of persons with disabilities. “the convention on the rights of persons with disabilities is the response of the international community to the long history of discrimination, exclusion and dehumanization of persons with disabilities” (united nations, , p. iii). the united nation’s “convention on the rights of persons with disabilities” advocated that people with disabilities are people with rights (p. iii). this convention was seminal in elucidating 	
   	
   contemporary views of disability through shifting the perspective from a biomedical to a socio- political one (herr et al. , p. ). the construct of disability from a socio-political approach is viewed as a complex interaction of biological, psychological, cultural and socio-political factors (bickenbach, , ). although the social approach broadens our understanding and appreciation of disability, capturing a broad picture of this construct does not appear to be a matter of simply adopting a single approach. the socio-political approach is broader and more inclusive than the biomedical approach. it provides a means of examining various dimensions of disability in conjunction with the biomedical approach. assumptions underlying the socio-political approach are reflected in the world health organization’s international classification of functioning, disability and health (icf) which is distinct from and an extension of its earlier version, the icidh. in the icf, disability serves as an umbrella term for impairments, activity limitations and participation restrictions (icf, , p. ). the “icf attempts to achieve a synthesis, in order to provide a coherent view of different perspectives of health from a biological, individual and social perspective” (p. ). the icf depicts the process of functioning and disability across domains (body functions and structures, activity and participation) and the inclusion of “contextual factors” (personal and environment) expands the construct of disability. at the global level, the profession of occupational therapy has adopted the icf of the world health organization and its definition of health. the icf is becoming a generally accepted framework in medicine as well as the rehabilitation sciences (stucki, ). as stated, the icf consists of three key components, namely, body functions and structures, activity, and participation. some aspects of the icf are thought to need further development and research to better elucidate the determinants of functioning and health (to´ra & dahl, ; imrie, ). as well, the icf has been criticized by the disability research and disability rights communities on the grounds that several dimensions of individual rights and of life satisfaction are absent (herr et al. ; imrie, ). the terminology reflected in the icf is limited to health terminology. for example, because of their races, sex, religions and other socioeconomic characteristics, people may be restricted in their execution of a task in the environments in which they live. although the icf is predicated on the world health organization’s definition of health (i.e., health is a complete state of physical, 	
   	
   social and emotional well-being, including being able to participate fully in one’s community and life), some advocates for people with disabilities fail to recognize this central fact. thus, race, sex, religion and other socioeconomic characteristics are not viewed by some as health related restrictions of participation as classified in the icf. in fact, some disability rights critics have rejected the icf as being no more than a “repudiated medical model” in that it does not seem to them to be a practical means of understanding the complexity of disability (herr et al. , p. ). thus, despite its general acceptability by the rehabilitation professions, the icf is viewed by some others as not completely reflecting a human rights perspective. in the socio-political approach, the three elements of the concept of disablement, i.e., impairment, disability, and handicap, are integrated to formulate disability as a rights issue (bekhenbach, , p. ). according to this perspective, disability is a problem of equality. but what does equality mean? bekhenbach described equality as having three dimensions: equality of respect, equality of opportunity, and equality of capability. equality of respect was conveyed as “a respect in which everyone is relevantly equal, a respect which is unaffected by any manifestation of human difference” (bekhenbach, , p. ). equality of opportunity was derived from john rawls’s discussion on principles of justice; the priority of basic equal liberties and fair opportunity for all citizens (rawls, ). according to rawls, a just society must protect equal basic liberties and fair equality of opportunity for all citizens (rawls, ). sen argued that equality of opportunity can be better understood in terms of “equality of what” (sen, ). according to sen,“equality of what,” means equality of capabilities. the idea of “capability” means “the opportunity to achieve valuable combinations of human functionings, i.e., what a person is able to do or be” (sen, , , , ; nussbaum, , ). . . capabilities approach the concept of human rights has been understood in various ways. one way that appears consistent with contemporary philosophy of occupational therapy is the capabilities approach. the capabilities approach can embrace the language of rights and the main conclusions of the international human rights movements, as well as the content of many international human rights documents (nussbaum, , p. ). the idea of capability is central to understanding human rights (nussbaum, ; sen, ). according to the capabilities approach, human rights can 	
   	
   be seen as claims to certain basic capabilities or as entitlements to capabilities (sen , ; nussbaum, , ). sen’s priority in developing the capability approach was to provide a framework for the conceptualization of human development and for the analysis and assessment of poverty. sen viewed the capability approach as having two core concepts: functionings and freedom. functionings is the achievement of the individual, what he or she achieves through being or doing. functionings is ‘beings and doings’ such as being nourished, being confident, or taking part in group decisions. functionings includes all types of functioning, from basic ones to complex ones. freedom is the second core concept of the capability approach. in sen’s view, freedom is “a person's ability to get systematically what he would choose” (alkire, , pp. - ). thus, capability, for sen, is a kind of freedom to achieve alternative functioning combinations. sen initially conceptualized the capability approach in the context of poverty. according to sen, poverty can be conceptualized in terms of “capability deprivation”. in his perspective, income is not the only means of determining one’s capabilities (sen, , pp. - ). in assessing poverty, sen considers that the relationship between income and capability is strongly affected by parametric variations such as the person’s age, sex, social roles, location (proneness to flooding or drought), and epidemiological environment (based on disease in a region); and by other variables over which a person has limited control. therefore, according to sen, not only personal characteristics such as disability or illness reduce one’s ability to earn an income, but they also make it harder to convert income into capability because a person who is more disabled or seriously ill may need more income for aid and treatment to achieve a level of functioning comparable to a person without such disability or illness (sen, , p. ). finally, in terms of capabilities, deprivation results from the interaction among the resources available to a person, personal characteristics (e.g., impairment, age, and sex) and the environment. thus, poverty can be viewed as a person’s failure to achieve basic capabilities or the failure to choose what he or she values. similar to poverty, disability can be logically viewed in terms of the failure of a person with a disability to achieve basic capabilities (welch saleeby, ; mitra, ; terzi, ). although deprivation can result from the nature of an impairment, it may not be the only cause. in light of the capability approach, the relationship between impairment and capability may be 	
   	
   more consequential than impairment alone. in addition, this relationship may be affected by the age of the person, his or her sex, geographical location, and culture. in summary, disability can be defined in terms of the failure of a person with a disability to achieve basic capabilities, or the failure to choose what he or she values. capabilities approach in practice the united nations development program has published the human development report annually since ; the content of this report is partly based on the capability approach (undp, – ; robeyns, ; alkire, ). in the human development reports, human development is defined as “a process of enlarging people's choices”, which is achieved “by expanding human capabilities and functionings” (undp, , p. ). today, over “ national-level human development reports” use the capabilities approach as a basis for discussing “regional, national and local development strategies” (robeyns, ). in addition to the human development reports which put the capability approach into practice, several recent studies have assessed this approach empirically. robeyns ( a) addressed the current applications of the capability approach, specifically, general assessments of the human development of a country (drèze & sen, ; ranis, stewart, & ramirez, ); identification of the poor in developing countries (laderchi, ; klasen, , qizilbash, ; asali, reddy, & visari, ); poverty and well-being assessments in developing countries (balestrino, ; phipps, ; chiappero-martinetti, ); the assessment of gender inequalities (sen, ; robeyns, ; chiappero-martinetti, ); theoretical and empirical analyses of policies (schokkaert & otegem, ; lewis & giullari, ; dean et al., ; terzi, ); critiques on social norms, practices and discourses (olson, ; robeyns, c); and an analysis of the deprivation of people with disabilities (zaidi& burchardt, ; kuklys, ). there have been few studies of the capabilities approach based on qualitative methods (arends-kuenning & sajeda, ; alkire, ; anand et al., ). zimmermann ( ) argues that the capabilities approach has largely been studied within quantitative methods. but the importance of examining capabilities approach qualitatively has largely been ignored. zimmermann argues that researchers need to seriously consider the use of qualitative methods in studies of the capabilities approach to obtain a rich and detailed understanding of constructs such as freedom and opportunities which are core concepts of the capability approach. 	
   	
   capabilities approach and disability in recent years, there has been increasing literature reporting the usefulness of the capability (capabilities) approach for understanding, analyzing, and assessing disability. in , baylies reviewed human rights discourses related to disability and argued that the capabilities approach may provide a better framework “for identifying the responsibilities of governments and external agencies in genuinely equalizing opportunities” (p. ). terzi ( ) argued that the capability approach is “an ethical, normative framework based upon justice and equality” (p. ), which provides an essential view for reconceptualizing disability and special needs. terzi ( ) believes that the capability approach is an appropriate framework for “assessing the relevance of impairment and disability in designing just and inclusive institutional and social arrangements” (p. ). she believes that the capability perspective on disability provides appropriate directions for inclusive educational policies to respect human diversity and to consider the special needs of children with disabilities. terzi ( ) provides a conceptual framework based on the capability approach for a just distribution of opportunities and effective access to educational functionings for children with disability and special educational needs. following the increasing literature on conceptualizing equity in education within a social justice framework, polat ( ) discusses the theoretical relationships between inclusion in education and social justice. polat draws on nussbaum’s capability approach which brings disability into the social justice debate to develop an index of inclusion in tanzania. robeyns ( ) believes that the central aim of educational policy must be to expand people's capabilities. mitra ( ) believes that the capability approach helps to understand disability at the conceptual level, namely, potential and actual disability. accordingly, disability may result from an individual's personal characteristics, resources, and environment. further, mitra believes that the capability approach can be considered a useful framework for analyzing the employment and the standard of living of people with disabilities. sherlock and barrientos ( ) argued that nussbaum's capabilities approach can be considered a useful tool for understanding the condition of older people in developing countries. gilroy ( ) suggested that the capabilities approach could be a valuable tool for providing a 	
   	
   framework for evaluating the environments of older people and the level of support that they provide. some researchers have been interested in the applicability or compatibility of the capability approach within the icf or social model. welch saleeby ( ) believes that together the capability approach and the icf help to understand disability. this approach, according to her, helps practitioners to evaluate what people with disabilities are actually able to do in their lives. morris ( ) believes “the capability approach provides an alternative framework to the icf for examining inequalities in well-being and social arrangements” (p. ). morris believes that including a capability perspective for measuring participation may be more helpful than “measuring only ‘capacity’ and ‘performance’ as proposed by the icf” (p. ). according to morris, the goal of services should be to equalize children’s capability sets by removing barriers to enable participation and giving children a degree of choice and freedom, therefore, a key outcome in evaluation services is increasing children’s capabilities, rather than performance. reindal ( ) claims that a modified version of the social model is more compatible with the capability approach than the icf. trani, bakhshi, noor, and mashkoor ( ) discussed disability policy in afghanistan and that it has had rather limited impact. trani et al. suggested that sen's capability approach can be considered as a relevant framework for designing disability policy and implementation. orton ( ) explored whether the capabilities approach offers a potential framework for new thinking in relation to policy in the united kingdom. after reviewing this policy on employment, work and welfare, orton concluded that “the capabilities approach is best thought of not as offering a detailed road map for policy, but as providing a critically different conceptualization of the purpose and principles of public policy” (p. ). to conclude, in a review of the literature, the capabilities approach is generally considered a tool for social justice in the context of disability. despite the growing literature on the capabilities approach, its application has been largely overlooked within the context of the rehabilitation professions, including occupational therapy, and their practices. central human functional capabilities sen’s capability approach was deliberately incomplete (alkire, ; sen, ). his main concern was showing how the capability approach can be shared among scholars, even those 	
   	
   with opposing philosophical ideas. a common conceptual base enables scholars from various backgrounds to work on common issues (alkire, ; robeyns, a). but the questions of what are basic capabilities, and how can they be identified, operationalized, and put into practice, have remained at the core of the capabilities approach (alkire, ; gasper & staveren, ; robeyns, b, ; deneulin, ). nussbaum attempted to address these questions. she detailed the central human functional capabilities (chfcs) with the intention of providing a basis for “constitutional principles that should be respected and implemented by the governments of all nations, as a bare minimum of what respect for human dignity requires”. nussbaum’s description of chfcs was an effort “to summarize the empirical findings of a broad cross-cultural inquiry” (nussbaum, , p. ). she advocated that the list that resulted should be considered as “a list of very urgent items that should be secured to people” (nussbaum, - ). nussbaum’s chfcs include (nussbaum, , pp. - ): . life. being able to live to the end of a human life of normal length; not dying prematurely, or before one’s life is so reduced as to be not worth living. . bodily health. being able to have good health, including reproductive health; to be adequately nourished; to have adequate shelter. . bodily integrity. being able to move freely from place to place; having one’s bodily boundaries treated as sovereign, i.e. being able to be secure against assault, including sexual assault, child sexual abuse, and domestic violence; having opportunities for sexual satisfaction and for choice in matters of reproduction. . senses, imagination, and thought. being able to use the senses, to imagine, think, and reason – and to do these things in a “truly human” way, a way informed and cultivated by an adequate education, including, but by no means limited to, literacy and basic mathematical and scientific training. being able to use imagination and thought in connection with experiencing and producing self-expressive works and events of one’s own choice, religious, literary, musical, and so forth. being able to use one’s mind in ways protected by guarantees of freedom of expression with respect to both political and artistic speech, and freedom of religious exercise. being able to search for the ultimate meaning of life in one’s own way. being able to have pleasurable experiences, and to avoid non-necessary pain. 	
   	
   . emotions. being able to have attachments to things and people outside ourselves; to love those who love and care for us, to grieve at their absence; in general, to love, to grieve, to experience longing, gratitude, and justified anger. not having one’s emotional development blighted by overwhelming fear and anxiety, or by traumatic events of abuse or neglect. (supporting this capability means supporting forms of human association that can be shown to be crucial in their development.) . practical reason. being able to form a conception of the good and to engage in critical reflection about the planning of one’s life. (this entails protection for the liberty of conscience.) . affiliation. a. being able to live with and toward others, to recognize and show concern for other human beings, to engage in various forms of social interaction; to be able to imagine the situation of another and to have compassion for that situation: to have the capability for both justice and friendship. (protecting this capability means protecting institutions that constitute and nourish such forms of affiliation, and also protecting the freedom of assembly and political speech.) b. having the social bases of self-respect and non-humiliation; being able to be treated as a dignified being whose worth is equal to that of others. this entails, at a minimum, protections against discrimination on the basis of race, sex, sexual orientation, religion, caste, ethnicity, or national origin. in work, being able to work as a human being, exercising practical reason and entering into meaningful relationships of mutual recognition with other workers. . other species. being able to live with concern for and in relation to animals, plants, and the world of nature. . play. being able to laugh, to play, to enjoy recreational activities . control over one’s environment. a. political. being able to participate effectively in political choices that govern one’s life; having the right of political participation, protections of free speech and association. b. material. being able to hold property (both land and movable goods), not just formally but in terms of real opportunity; and having property rights on an equal basis with others; having the right to seek employment on an equal basis with others; having the freedom from unwarranted search and seizure. 	
   	
   critical review of the capabilities approach although there is not any literature to specifically criticize nussbaum’s central human functional capabilities, the capabilities approach itself has confronted some objections and critiques. this section examines various critiques of this approach. first, we review some of john rawls’ advocates and also ronald dworkin’s critics of the capabilities approach. second, we examine some of the opponents to this approach with respect to its universal applicability and cultural considerations. third, we review criticisms related to the cosmopolitan approach. strict critical ideas are from adherents of rawls’ theory of justice, for instance, thomas pogge ( a) argues that although the capability approach has “done much to advance the discussion of social justice …”, it cannot be justified as a comprehensive theory of justice (p. ). he maintains that a theory of social justice must clarify its principles; as rawls developed “justices as fairness” based on the two principles of justice: the priority of equality and fair opportunity for all citizens (rawls, ). in the same vein, joshua cohen ( ) has criticized one of the main claims of the capability approach, that “the facts of diversity complicate our understanding of equality” (p. ). he argued that rawls’s “primary-goods comparisons will suffice” in that case (p. ). rawls described primary goods as “what persons need in their status as free and equal citizens, and as normal and fully cooperating members of society over a complete life” (rawls, , p. ). rawls’s primary goods are “things which a rational man wants; whatever else he wants” (rawls, , p. ). in response to these rawlsian critics, robynes ( ) argues that these criticisms are overstated difference between the capabilities approach and rawls’s justice as fairness. in this way, she continues, rawls argues that interpersonal comparisons for social justice is based on social primary goods, the main claim of the capability approach is that in making interpersonal comparisons based on the dimension of capabilities (robeyns, ). she asserted that “rather than pitting both theories against each other as rivals, it is possible to understand the capability approach and justice as fairness as complementary and potentially converging theories” (p. ). another critic is ronald dowrkin, who argues that the capability approach is unclear and “the false goal of equal welfare or well-being” ( , p. ). he claims that sen’s view of capability is vague as it either collapses into equality of welfare, or into equality of resources (p. ). responding to dworkin’s critique, sen argues that the distinction between capability and 	
   	
   achievement shows equality of capability is not the same as equality of welfare. he also argues that the equality of resources is not the same as the equality of capability: since resources are ‘merely useful and for the sake of something else’ (as aristotle put it), and since the case for equality of resources rests ultimately on that ‘something else’, why not put equality of resources in its place as a way of getting to equality of the capability to achieve- if the congruence between the two does actually hold? (sen, , p. ). other critics, however, argue that the capabilities approach is indifferent to cultural diversity. for example, gasper ( ) argues that the capabilities approach needs to pay more attention to “culture” and “the individual”. also, skerker ( ) believed that universal applicability of nussbaum’s capabilities approach has some limitations, particularly with respect to religion (p. ). nussbaum, however, asserted that the capabilities approach is “fully universal”, because it is based on “the freestanding moral core of a political conception, without accepting any particular metaphysical view of the world, any particular comprehensive ethical or religious view, or even any particular view of the person or of human nature” (nussbaum, , p. ). also rejecting the critique concerning inappropriateness of a conception of person in the capabilities approach, nussbaum states that capabilities should be considered as “important for each and every citizen, in each and every nation, and each is to be treated as an end.” (p. ) presenting the capabilities approach as “a form of universalism that is sensitive to pluralism and cultural difference”, nussbaum provides a strong critical response to the objection based on cultural arguments (nussbaum, , p. ). according to nussbaum, the capabilities approach does not ignore cultural differences; it is rather attempting to avoid cultural relativism. the idea of relativism, as nussbaum states, is clearly in conflict with the modern world. she argues that “why should we follow the local ideas, rather than the best ideas we can find? ... most local traditions take themselves to be absolutely, not relatively, true…. so in asking us to follow the local, relativism asks us not to follow relativism” (p. ). thus she maintains, “the cultural argument fails; nor can it be rescued by an appeal to moral relativism” (p. ). nussbaum believes that we need local knowledge in order to understand the problems people face. but this is completely different with the claim of paternalism to treat people with insufficient or unequal respect. nussbaum writes, people are the best judges of what is good for them, and if we prevent people from acting 	
   	
   on their own choices, we treat them like children…. the variety of ways citizens actually choose to lead their lives in a pluralistic society, and therefore to prefer a form of universalism that is compatible with freedom and choice of the most significant sorts (nussbaum, , p. ). she argues that we should reject paternalism “because there is something else that we like, namely each person’s liberty of choice in fundamental matters” (nussbaum, , p. ). some critics such as anthony burns ( ) emphasized the ambiguous relationship between nussbaum’s capabilities approach and the cosmopolitan tradition. according to cosmopolitan thinkers, there are various versions of cosmopolitanism. pogge ( b) distinguishes between two versions of cosmopolitanism: legal (strong), and moral (weak). he writes, legal cosmopolitanism is committed to a concrete political ideal of a global order under which all persons have equivalent legal rights and duties - are fellow citizens of a universal republic. moral cosmopolitanism holds that all persons stand in certain moral relations to one another. we are required to respect one another’s status as ultimate units of moral concern - a requirement that imposes limits on our conduct and, in particular, on our efforts to construct institutional schemes. this view is more abstract, and in this sense weaker than, legal cosmopolitanism (p. ). nussbaum ( ) believes “because the capabilities approach is a form of political liberalism, it is not a comprehensive doctrine of any sort. it is therefore mistaken, and a serious misreading of my political views, to call it a form of cosmopolitanism” (p. ). despite nussbaum’s claim, burns argues that nussbaum can be related with a weak form of cosmopolitanism. while it is hard to support legal (strong) cosmopolitans, moral (weak) cosmopolitans are defensible. one can argue that the weak version of cosmopolitanism “can be accepted by almost anybody – excepting a few racists and other bigots” (miller, , p. ). however, although the capabilities approach is not based on any comprehensive doctrines including cosmopolitanism, as nussbaum says, it can be endorsed by many comprehensive doctrines: “cosmopolitans can probably accept most of what i recommend, but one does not have to be a cosmopolitan to accept the idea that all citizens should have a minimum threshold amount of the ten capabilities” (nussbaum, , p. ). although there are some important arguments among these critics, it seems that the capabilities approach is able to answer a range of questions. by making a distinction between capabilities, functionings, and freedom of choice, it shows its boundary with rawsian’ theory of justice and dowrkin’s equality of welfare and equality of resources. also, it shows that this 	
   	
   approach has no conflict with cultural differences but it is against cultural relativism. furthermore, it shows although it is not based on any comprehensive doctrines, many cultural and religious traditions or moral cosmopolitans can endorse it. . rationale for the thesis disability has become a human rights issue (un, , ). people with disabilities in much of the world lack the support to ensure their basic human rights are respected, and their fundamental capabilities are maximized. they are more likely to experience failure in their capabilities, as articulated by nussbaum, including living a normal life expectancy, being healthy, being able to move freely from place to place, being able to experience self- expressive and creative activities, having attachments to people and things, being able to plan for one’s life, being able to show concern for other human beings and engage in various forms of social life, being able to live with concern for and in relation to the world of nature, being able to laugh, play, to enjoy recreational activities, being to participate effectively in political choices that govern their lives; having the right to political participation, and having the right to seek employment on an equal basis with others (nussbaum, ). people with disabilities, “like other human beings, have needs in the areas covered by all the capabilities” (p. ). rehabilitation programs “should be based on the individual needs of people with disabilities and on the principles of full participation and equality” (united nations, ). rehabilitation professions such as occupational therapy have a particular commitment to functional independence and participation in life in an environment that is both enabling and respectful of an individual’s right to live, work and play without imposed restriction. for the purposes of this research, we argued that the contemporary values of occupational therapy practice are consistent with maximizing people’s functional capabilities embedded in the capabilities approach, hence, consistent with promoting the rights of people with disabilities. therefore, we queried whether nussbaum’s ten chfcs have a role in enhancing ots’ knowledge about a client’s basic needs and rights, such that they could be used systematically to inform and guide a client’s management to maximize his or her functional capabilities. we planned to elucidate the perspectives of canadian ots related to their understandings of the ten chfcs put forth by nussbaum, and their perceived 	
   	
   relevance to professional practice. this exploration and examination of the capabilities approach in an applied health context could help align health care specifically occupational therapy services with human rights initiatives of the united nations and the world health organization, based on adherence to universally accepted principles. this type of exploration has the potential to be extended to other health care professions and across cultures. . thesis chapters to explore the views of canadian ots about their understandings and perceived relevance of nussbaum’s ten chfcs to the profession and their practices, the study consisted of two phases. phase one consisted of semi-structured interviews and phase two consisted of a national online survey. the overall dissertation is organized into five chapters. chapter presented the introduction to the study, reviewed the literature on common rehabilitation service approaches and the capabilities approach, and the general aims of the work. chapter describes the study’s methodology and presents the exploratory sequential mixed methods design as the best-fit design, and overviews its two phases. with respect to phase one, chapter describes the qualitative methodology selected for collecting and analyzing the data, and describes the findings. with respect to phase two, chapter describes the online survey for collecting and analyzing the quantitative data, and presents the survey results. chapter discusses the mixed qualitative and quantitative findings, and the main findings overall, their implications, and the strengths and limitations of the study overall. 	
   	
   methodology . study design this chapter describes the methodological and epistemological perspectives that frame the study, specifically, the methods guiding the study and the rationale for the use of mixed methods and a pragmatist approach to the research. . . purpose of statement the purpose of the exploratory sequential mixed methods design of this study was to explore and understand the views of occupational therapists (ots) about their understandings and perceived relevance of the central human functional capabilities (chfcs) with respect to their professional practices. phase one of the study consisted of a qualitative exploration of the views of ots about the chfcs based on interviews. findings generated from the qualitative study informed the development of a questionnaire survey that was used to collect data from a larger population of canadian ots. phase two of this study consisted of a quantitative description of their views and thoughts regarding the qualitative findings generated in phase one. data from both phases were mixed for the final analysis designed to provide a more complete description of ots’ views regarding the relevance of the ten chfcs to ot practice. based on the purpose of the research and the research questions, the researcher chose a pragmatist approach to the inquiry using mixed methods to gather data. the following section describes the mixed methods design and justifies the philosophical underpinnings of a pragmatist approach for this research. . . research questions the design described above was selected to address the following research questions: . what are ots’ understandings of the ten chfcs? . how may these capabilities be relevant to the contemporary practice of ots? these questions were addressed in both the qualitative and quantitative phases of this thesis. 	
   	
   . . mixed methods design mixed methods research is “an approach to knowledge (theory and practice) that attempts to consider multiple viewpoints, perspectives, positions, and standpoints” (johnson et al., , p. ). mixed methods designs have become increasingly popular among rehabilitation researchers this past decade (creswell, ; plano clark, & creswell, ). mixed methods designs described as “the collection or analysis of both quantitative and qualitative data in a single study in which the data are collected concurrently or sequentially, are given a priority, and involve the integration of the data at one or more stages in the process of research” (creswell et al., , p. ). these designs take advantage of both qualitative and quantitative methods to enhance the credibility of the research findings through integration of data from two data collection methods (patton, ; ivankova et al., ). the reason for combining qualitative and quantitative methods begins with the recognition that different methods have different strengths (morgan, ). morgan ( ) cited that some researchers have criticized mixed methods designs on the ground that quantitative and qualitative approaches stem from various paradigms and assumptions about the nature of knowledge. from the critics’ point of views, mixed methods researchers have not deeply considered issues and concerns of each paradigm (morgan, ). they asserted that quantitative approaches stem from positivism tradition that seeks objectivity, and that qualitative approaches stem from the interpretative paradigm that recognizes the existence of multiple realities and meanings (morgan, ). researchers have argued that the use of mixed methods becomes a technical task of choosing appropriate methods by trying to combine the strengths of both approaches within one framework, rather than trying to combine conflicting paradigms. they assert that mixed methods designs enable researchers to maximize the ability to bring various strengths together in the same study (morgan, ; johnson &turner, ; johnson & onwuegbuzie, ). mixed method researchers do not advocate one approach over another, they view qualitative and quantitative approaches as being compatible rather than opposed. for them, all approaches are valuable (teddlie & tashakkori, ). an advantage of mixed methods designs is that these designs enable “the researcher to simultaneously answer confirmatory and exploratory questions, and therefore verify and generate theory in the same study” (p. ). therefore, both qualitative and quantitative methods appear to be valid means of generating and verifying theory. 	
   	
   . . exploratory sequential mixed methods an exploratory sequential mixed methods design was selected as best fitting the purpose of this study. the design consisted of an initial qualitative data collection and analysis followed by a quantitative data collection and analysis (creswell & plano clark, , ). according to creswell and plano clack ( ), the four major types of mixed methods designs are the triangulation design (where two methods are used to obtain triangulated results in the same study (p. ); the embedded design (where a second source of data is used to enhance the study); the explanatory design (where quantitative methods are used to explain the results), and the exploratory design (where qualitative methods are used to explore a phenomenon in depth) (p. ). an exploratory mixed methods design is considered when “measure or instruments are not available, the variable are unknown, or there is no guiding framework or theory” (creswell & plano clark, , p. ). researchers employ this design when they need to “generalize results to different groups, to test aspects of an emergent theory or classification or to explore a phenomenon in depth and then measure its prevalence” (p. ). according to morgan ( ), it is important to determine “a priority decision” and “a sequence decision” when using mixed methods design. the priority decision establishes the principal method for collecting data. priority can be given to one method over the other, or both methods can play equal roles in a study. many factors influence the priority decision, e.g., the purpose of the study, the research questions, the researcher’s background, and resources (plano clark, & creswell, ; creswell, ). priority in this study was given to the qualitative phase because the topic was new and little is known (morgan, ). thus, the results from the qualitative phase (phase one) informed the quantitative phase (phase two). the sequence decision concerns “the order in which the qualitative and quantitative data are used” (morgan, , p. ). the sequence decision is based on timing considerations (creswell & plano clark, ). timing refers to when one source of data is collected and analyzed before the collection and analysis of the other source of data (creswell, ; creswell and plano, ). in an exploratory sequential design, the qualitative data are collected and analyzed first, follow by the quantitative data. the rationale for this design was that the quantitative data and their subsequent analysis provide a general understanding of the area of 	
   	
   interest. its advantages include opportunities for the explanation of the qualitative results. this design can be especially useful for exploring or developing new idea (hanson, et al., ) as was proposed for this study. the initial qualitative phase allowed determination of ots’ understandings and views about the ten chfcs and in what way these capabilities are described as relevant to occupational therapy practice. the qualitative data of phase one were used to develop the survey questionnaire for phase two. the quantitative data of phase two were used to further explain the data overall. all data were then examined together in a process of data integration, in order to comprehensively address the research questions. . overview of the research phases the main purpose of this study was to explore and describe the views of canadian ots with respect to their understandings and perceived relevance of nussbaum’s chfcs to their professional practices. an exploratory sequential mixed methods study was conducted in two phases. phase one focused on how the nussbaum’s chfcs may be relevant to contemporary occupational therapy practices. semi-structured interviews were conducted with ots in british columbia, canada, who had indicated their willingness to participate in order to explore their views related to the ten chfcs, and provided insight into how each of the capabilities might be operationalized within the context of the practice of occupational therapy. findings generated from phase one (the qualitative study) informed the development of a survey instrument that was used to collect data from a larger population of ots. a cross-sectional survey of a population of ots practicing in canada was conducted in phase two to confirm and extend the categories that emerged from phase one. data from both phases were then mixed in the final analysis to provide a more complete description of the ots’ views about the ten chfcs in relation to occupational therapy practice. 	
   	
   the views of occupational therapists about the central human functional capabilities with respect to their profession and practice: a qualitative study this chapter describes the qualitative methodology for phase one of the study. it describes the strategies used to collect and analyze the data, and describes the qualitative findings. . study design qualitative methods are said to be useful when describing a point of view, when the variable will not be identified easily, when the topic needs to be explored and explained with detailed descriptions, and when the topic is new or little is known (morse, ; creswell, , ). qualitative researchers are committed to incorporating many truths and multiple realities, rather than one truth and one reality. they are committed to elucidating ranging perspectives and reporting their observations in a “rich literary style” (streubert & carpenter, , p. ). in addition, if a research idea deals with “imprecise concepts” or intends to study issues in depth and in detail, this then leads better to qualitative rather than quantitative methods (flick, , patton, ). as the notion of “the relevance of central human functional capabilities (chfcs) to occupational therapy practice” is new to the profession of occupational therapy and little is known, phase one was designed to be qualitative to allow the topic to be explored and explained with detailed descriptions. the qualitative phase of this study did not precisely match the five commonly reported qualitative traditions; namely, ethnography, case studies, phenomenology, narrative research, and grounded theory (creswell, ). the ethnographic design was not a component of this study because cultural issues and observation were not its focus. nor could it consider a phenomenology design, as this inquiry did not seek to understand and describe the phenomenon of experiences. the study was neither consistent with being classified as a case study nor narrative research, because it did not intend to report stories; nor did it constitute grounded theory as it did not intend to develop a new theory. as this study was not guided by established qualitative traditions, a generic qualitative approach was used. caelli, ray, and mill ( ) noted that many terms used in qualitative research literature do not match an explicit qualitative approach; such as “interpretive 	
   	
   description” defined by thorne et al. ( ) or “basic or fundamental qualitative description” described by sandelowski ( ), they are generic qualitative approaches. caelli et al. ( ) defined generic qualitative studies as “those that present some or all of the characteristics of qualitative endeavor but rather than focusing the study through the lens of a known methodology they seek to do one of two things: either they combine several methodologies or approaches, or claim no particular methodological viewpoint at all” (pp. - ). given the overall purpose of this study was to explore the views of occupational therapists (ots) about the chfcs, the phase one was approached from the interpretive description, which focuses on the understandings and perceptions of the participants (thorne, ). . . interpretive description “interpretive description” as a methodological approach employed in this phase enabled us to address the research questions in a way that was not addressed by the five commonly reported qualitative traditions. interpretive description methodology developed by thorne, kirkham, and macdonald-emes ( ) refers to “noncategorical qualitative research approaches that are derived from an understanding of nursing’s philosophical and theoretical foundations” (pp. - ). although interpretive description was developed in nursing science, it has recently been employed within the health professions as well (hunt, ). interpretative description methodology recognizes the influences of the theoretical basis for the study, and the knowledge and practice of the discipline (thorne, ). as described in chapter , the theoretical framework for this study was derived from the capabilities approach literature, characteristics of rehabilitation services, and the importance of client-centered practice in canada. interpretive description uses the theoretical structure of the research as a frame for the data collection and analysis. therefore, in this study, nussbaum’s ten chfcs were used as a frame for data collection and analysis. the researcher’s experience as an ot and her academic background in philosophy provided a unique lens through which to explore and interpret the data. this methodological approach enabled the researcher to examine the views of ots by identifying the shared realities of their experiences; and, to integrate the themes that emerged with the collective knowledge underpinning occupational therapy. 	
   	
   one characteristic of interpretive description is the use of the researcher’s theoretical background and experience as a framework for the data collection and analysis. thus, this study was informed by several sources: (a) the researcher’s examination of the literature of the capabilities approach; (b) several research projects that she had conducted during her graduate studies that examined social justice in health care, and (c) her experiences as an ot. . . reflexivity and researcher positionality researchers who conduct qualitative research must address the reflexivity and their theoretical positioning. reflexivity refers to the process of how researchers have influenced the research (dowling, ). in other words, it means “sensitivity to the ways in which the researcher and the research process have shaped the collected data, including the role of prior assumptions and experience, which can influence even the most avowedly inductive inquiries” (mays & pop, , p. ). as there is no personal neutrality in conducting a research (asselin, ), researchers need to be aware of their “motives, presuppositions, and personal history that leads him or her toward, and subsequently shapes, a particular inquiry” (caelli, et al., , p. ). therefore, the researcher in the present study adopted reflexivity by writing a journal to assist in her understanding of her prior assumptions and attitudes (dowling, ). writing about her background and identifying my assumptions in carrying out this research, shaped her reflections about the work and understanding and interpretation of the results. her perspective during this research has been greatly affected by her previous experience as an occupational therapist (ot), and graduate studies in philosophy at concordia university. from to , she was working as an ot with the iran welfare organization. during that time, the biomedical model was the predominant model in rehabilitation services, and health professionals treated people with disabilities as people with illness and impairment. she observed that the biomedical framework could not fully address the concerns of her clients. the majority of her clients were suffering from poverty and lack of access to basic needs more than their disabilities. the complexities of problems that people with disabilities in developing countries such as her country (iran) experience, led her to extend her knowledge outside occupational therapy practice. her aim was to explore the relationship between poverty and disability. she learned that poverty and disability have been identified as part of a “vicious circle” in the international 	
   	
   development literature; disability increases the risk of poverty and circumstances of poverty raise the risk of disability. during her master's program, she was fascinated with the idea of justice. her understanding of justice has been influenced by john rawls’s idea of “justice as fairness”. rawls defined “justice as fairness” as the priority of equality and fair opportunity for all citizens. her mind was preoccupied with how to extend justice to people with disabilities so they have equal opportunities to achieve their goals. during her doctoral program, she planned to explore further these issues of interest to her. she became familiar with an important theory, related to world poverty, the so-called capability approach. it provided her with a sound basis for thinking about the multidimensional nature of poverty and disability. she learnt that poverty could be understood as deprivation of basic human rights; and, human rights can be seen as claims to the chfcs. she thought about the applicability of the chfcs to occupational therapy practice. thus, she became interested in exploring the views of her colleagues with respect to their perceived relevance of the chfcs to professional practice. she interviewed ots related to this topic. throughout her research interviews, she was challenged to reflect on her own notions and assumptions of the chfcs. so early in her research, she believed it was important to write about her understanding of the chfcs to clarify her personal assumptions. she assumed that occupational therapy program plays a crucial role in reducing poverty and promoting basic rights by expanding the basic capabilities of people with disabilities. also, she assumed that nussbaum’s chfcs framework have implications for health practitioners. given the creative nature of occupational therapy practice, she assumed ots could identify strategies for expanding, improving, and creating the functional capabilities of people with disabilities. finally, she believed the outcome of this research would enable ots to better reflect on issues related to human rights and their role in promoting equal opportunities across people with varying needs. her assumptions were written down during the initial interviews and they influenced her during her research as a whole. . . selected sampling purposive sampling was employed for phase one, the qualitative study, in accordance with an interpretative paradigm. the sample of ots selected for participation consisted of those who 	
   	
   were thought to be able to best assist in enhancing the understanding of the meaning, relevance and applicability of the chfcs to occupational therapy practice. selecting a purposeful group of participants helped to maximize the chance of acquiring a range of perspectives based on the participants’ diverse experiences, educationally and professionally (patton, ; minichiello et al., ). specifically, participants were selected to represent a range of interests and positions in relation to the profession of occupational therapy. the researcher sought to gather the most varied and insightful information possible from the participants to reflect potential diversity of opinion about the relevance and applicability of the chfcs to occupational therapy practice. there are no strict criteria for sample size determination in qualitative methods. sample size is often justified when no new information seems to emerge (the saturation point). morse ( ) stated that reaching saturation “depends on a number of factors, including the quality of data, the scope of the study, the nature of the topic, the amount of useful information obtained from each participant, the number of interviews per participant, the use of shadowed data, and the qualitative method and study design used” (p. ). initially, the researcher’s supervisory committee agreed that a sample of to interviewees would capture an appropriate sample size to obtain various perspectives. because the topic of this study was new, reaching a clear saturation point took longer. the researcher continued interviewing participants until data saturation has been achieved (n= ). estimating the number of participants in phase one of this study depended on the scope of the research questions, the clarity of questions, the difficulty of the topic, and study design. as well, writing field notes and reviewing audio files assisted with decisions related to further sampling and attaining saturation. . . qualitative phase recruitment as a recruitment method, the researcher used a purposive and a maximum variation sample. the researcher sought to gather the most varied information possible from the participants to reflect the possible diversity of opinions. purposive sampling included contacting professors at the university of british columbia (ubc) department of occupational science and occupational therapy to assist with identifying potential participants. as well, the ubc occupational science and occupational therapy academic fieldwork coordinator provided information to access ot practice coordinators at the gf strong rehabilitation center, mount saint joseph hospital, saint paul’s hospital, vancouver community health services, and 	
   	
   vancouver general hospital acute care services, all of which were within the greater vancouver metropolitan area. the researcher established the following criteria for participants for phase one: they were working in bc and were able to communicate in english. in order to have a sample group as representative as possible in the field, some participants worked in clients’ homes and in community settings, while others worked in hospitals, institutional, schools, and private clinic settings. . . description of participants the description of the participants appears in table . . the researcher attempted, unsuccessfully, to recruit men as participants to the study, so all participants were women. eleven ots were educated in canada. although each participant had experienced working in multiple settings, six had worked in hospitals, and five had worked mainly in clients’ homes or community settings, two had worked in hospitals and communities, and two were working at the university. in this study, the researcher initially decided to recruit ots from a range of settings and professional roles including practice, educators, faculty members, and administrators in british columbia. at the same time, consideration was given to participants’ age, duration of experience, and practice settings. the ages of participants ranged from to years. participants graduated from occupational therapy training between and . they had worked as ots between and years and in a range of settings. . data collection . . semi-structured interviews consistent with interpretive description, interviews have become the primary source of data in many fields of qualitative inquiry to produce meaningful answers to research questions (thorne, , p. , p. ). the primary source of data collection in phase one was through one-on-one, face-to-face, open-ended, semi-structured interviews. comparable to administering structured interviews, in the semi-structured interviews, the researcher asked the same questions, in the same order for all participants (morse, , pp. 	
   	
   - ). one advantage of using semi-structured interviews is comparability of the data, because they were obtained through consistent use of an interview guide (morse, ; flick, ). flick ( ) points out that if collecting concrete statements about an issue is the aim of the data collection, semi-structured interviews are the most efficient means of doing so. as the purpose of phase one was to explore the ots’ views about the ten chfcs with respect to their understandings and perceived relevance of these capabilities to their professional practice, the semi-structured interview method was understood to be the most appropriate method. this method enabled the researcher to use the interview guide to ask each participant the same questions, and generated additional questions during the interview when needed to clarify the participants’ meanings and views. . . designing the interview questions pilot interviews with two ots were conducted to generate feedback about the interview guide, which is generally considered to be a list of questions or a series of issues that the researcher brings to an interview (johnson & turner, , p. ). pilot interviews provided feedback about the clarity and logical ordering of the interview questions, the duration of the interview, as well as allowing the researcher to evaluate her interviewing technique. finally, an interview guide was finalized based on the issues raised through the pilot interviews. interview questions were designed to address the initial research questions: ) what are ots’ understandings of the ten chfcs, and ) how may these capabilities be relevant to the contemporary practices of ots (appendix b). the interview questions were therefore designed based on parts ( chfcs, and one general views about the chfcs). each part has two categories based on the two research questions (ots’ understandings, and the relevance). . . conducting the interviews following the pilot study, the researcher interviewed ots who indicated they were willing to participate in the study. at the initial meeting, the consent form (appendix c) was reviewed with each participant, and then she was requested to sign the form. prior to each interview, the participants were informed about the study and its requirements, and informed that they were free to discontinue the interview or refuse to answer any question. on meeting with each 	
   	
   participant, the researcher provided further instruction to them. permission to record the interview was obtained. informed consent was reviewed, assuring participants that their participation was voluntary and their responses would be confidential. they were informed that the interview would be tape-recorded and transcribed and that some of the information they provide might be quoted anonymously in the study results. the participants were interviewed once, in a quite environment of their choice (for example, at their workplace, at their homes, or at my office). the informed consent, demographic questions, and a copy of the interview guide were sent to participants a week prior to the interview date to allow time for reflection on the topic. the interviews were audio recorded and transcribed verbatim from the digital recordings. interviews were conducted between february , and march , . each interviewee participated in an interview that lasted to minutes. the researcher maintained memos while conducting the interviews and while listening and reading the transcripts. interview recordings were transcribed by a professional transcription service with an agreement of confidentiality and removal of information identifying the participants. in addition, the researcher listened to all interview recordings and re-read the transcripts several times to ensure accuracy. . data analysis data analysis began as the data were collected and this served as a basis for further data collection (streubert & carpenter, ; minichiello et al., ; creswell, ). analysis of the data began with reflecting on the researcher’s assumptions related to chfcs and their relevance to occupational therapy practice. based on interpretive description, the preliminary phase of data analysis is a time that the researcher reacts to the initial pieces of data that seem interesting and labeled them as ‘meaning units’ (thorne, , p. ). for example, the researcher reflected on a part of the transcript that seemed meaningful to her: “…it sort of reflects some approaches that we have already been introduced to, either as students, or i guess as students, and may be even just sort of societal, just some level of common knowledge, i guess.” (participant , p. ) in interpretive description, “the hard work of data analysis relies on the intellectual practices associated with seeing possible relationships among pieces of data you are gathering and then 	
   	
   considering the manner in which these relationships play out (or don’t) across the growing and evolving wider data set” (thorne, , p. ). so, the researcher asked herself: why do i interpret this part as a meaningful unit? what does it mean for me? does it provide meaning for my research questions? such questions allowed the researcher to reflect on the ‘meaning unit’, and to break it down into a shortened meaning unit and start coding (thorne, ). in interpretive description, one of the types of coding that is widely recommended is open coding (thorne, , p. ). therefore, the transcriptions of the initial interviews were reviewed and open-coding undertaken prior to subsequent interviews with participants. thematic analysis was used to segment and categorize the data. the following section describes the process used for thematic analysis. . . conducting thematic analysis thematic analysis involves the identification of prominent or frequent themes in the literature to summarize the findings of interviews under thematic headings. thematic analysis allows clear identification of prominent themes as well as organized and structured ways of dealing with the themes (dixon-woods et al., ; boyatzis, ; braun a& clarke, ). this analysis procedure in phase one enabled the researcher to: • systematically reduce and manage, organize and summarize data; and interpret them based on deductive thematic analysis (related to the ten capabilities), • quantify emerging themes for phase two of her study which aimed to extend and confirm the thematic categories to a larger population, and • transform the qualitative data into quantitative data (boyatzis, ). the process for analysis of the data consisted of: ) familiarization, ) reducing the raw information, ) generating initial codes (first cycle coding), ) reviewing themes, ) identifying themes within subsamples, ) comparing themes, ) creating themes, ) ensuring the credibility, and ) producing the report. there are two approaches to thematic analysis, inductive and deductive. this research used both processes. first, the deductive approach was applied t to examine the data, and then the nine-step process was used to inductively develop themes based on the guidelines of braun & clarke ( ) and boyatzis ( ). 	
   	
   as there is no one way to conduct thematic analysis, there is no one set of guidelines. braun and clarke ( ) provide a six-step process for analysis that includes: familiarizing yourself with your data; generating initial codes; searching for themes; reviewing themes; defining and naming themes; and producing the report. boyatzis ( ) uses five steps to inductively develop themes: reducing the raw information, identifying themes within subsamples, comparing themes across subsamples, creating themes, and determining the reliability of themes. although the nine-step process was followed as systematically as possible, analysis is not a linear process of simply moving from one step to the next. the process of thematic analysis required moving back and forth within the data to establish a comprehensive set of themes (braun & clark, ). familiarization becoming familiar with the data involves ‘repeated reading’ of the data, and reading the data in an active way, searching for meanings, patterns and so on. the researcher read the data set in its entirety before beginning the coding. reducing the raw information to codify is to arrange the data in a systematic order (saldana, ). the raw information was reduced to a manageable size (boyatzis, ). this involves preliminary identification of a priori themes, in this case, the ten chfcs guided the coding of the data. to summarize, the researcher reduced the data based on parts ( capabilities and general view). each part consisted of categories based on the two main research questions (ots’ understanding and perceived relevance). generating initial codes coding is the process of generating ideas and concepts from raw data. in interpretive description, “the idea of attaching “code” to a piece of interview transcript or file derives from assumptions that one knows what the element entails, what other kinds of things might be similar and what it ought to be distinguished from”(thorne, , p. ). the coding process refers to the steps taken to identify, arrange, and systematize the ideas, concepts, and categories uncovered in the data. coding consists of identifying potentially interesting events, features, phrases, behaviors, or stages of a process and distinguishing them with labels (benaquisto, ). 	
   	
   during the coding process, memo writing was used and was an essential part of the analysis (appendix d provided an example of analytic memo writing). it was used to elaborate and reflect on ideas that emerged from the data during the coding process. the researcher integrated memo writing throughout data collection and processing. in thematic analysis, the unit of analysis is inclined to be “more than a word or phrase” (boyatzis, ). it is not easy to derive a simple answer to the question of what amount of a data set should be consider as a theme (braun & clarke, ). researcher judgment is necessary to determine what a theme is (sipe & ghiso, ; braun & clarke, ). in this step, the researcher chose the parts of the data set that best addressed the interview questions, in terms of establishing themes. then, she queried whether each theme shed light on new discoveries, insights, and connections about the participants’ thoughts (saldana, ). the researcher coded the data manually to feel “close” to the data (creswell, , p. ). labels were written in the margins of transcripts, and memos were written as ideas emerged. the researcher used more than one method for first-level coding which included (saldana, pp. - ): attribute coding: used for essential information about the demographic characteristic of the participants, for example, age and gender. in vivo: referred to a word or short phrase from the actual language. this technique “helps us to preserve participants’ meanings of their views and actions in the coding itself” (charmaz, , p. ). process coding: used for ongoing action/interaction, response to situations, or problems). for example, when the phrase “it is important to listen to clients” emerged, it was coded as “listening to clients”. emotion coding: used to label the participants’ emotions and experiences. for examples: “…i don’t know” was coded as “uncertainty”. values coding: used to reflect participant’s value, attitude, and beliefs, for example, “affiliation capability is key to living”. evaluation coding: used to understand whether the participants made a positive (+) or negative (-) comment or recommendation (rec) tag was noted. for example, “…that not only it’s relevant, it may be helpful” reflects a positive view (+), while “…i don’t think it’s relevant to 	
   	
   daily practices in ot” reflects a negative view (-). when a participant provided a recommendation, for example, “there should be a guide for action” the (rec) tag was noted. in the initial coding stage, as many potential themes as possible were coded as it was difficult to predict what might be interesting later. key phrases or words that captured the main ideas of the participants’ responses to a specific question were highlighted, and any statements that the researcher felt were strongly communicated. at the end of this phase, the codes were analyzed to consider how they would fit into an overarching theme. “a theme is a phrase or sentence that identifies what a unit of data is about and what it means” (saldana, , p. ). reviewing themes this stage consisted of the code refinement. in this stage, themes were categorized based on main topics, themes, sub-themes, useless, and ‘miscellaneous’ themes (braun and clarke, ). the researcher labeled some themes such as “ots’ understandings of life capability”, or “relevance of life capability to occupational therapy practice” as the main themes. or, “affiliation capability is about social relations”, “control over one’s environment capability is about making decisions” as sub-themes. some themes did not seem to be useful in addressing the research questions, such as: “people with disabilities usually have a lot of grieving”, so the researcher categorized these as being less meaningful themes. some themes did fit into main themes or sub-themes, such as “people with mental health issues are treated differently”, “many people with mental health issues live at the poverty line”, and “bodily integrity capability is related to occupational therapy practice in developing countries”, so these were temporarily labeled as ‘miscellaneous’ themes with the potential of informing an essential theme or being a new theme. according to braun and clarke ( ), “the outcome of this refinement process can be seen in the thematic map” (p. ) in relation to the entire data set. the researcher went back and forth within the data set to further refine the categories until a thematic map emerged. a thematic map helped to translate categories into themes. as braun and clarke suggested, it is impossible to provide clear guidelines on when to discontinue data collection. therefore, the researcher discontinued when she noted refinements were no longer adding anything substantial. at the end of this stage, she had an idea about the themes that emerged, namely, a set of themes and sub-themes that were relevant to the study 	
   	
   research questions. a total of eleven thematic maps were generated through this analysis. as an example, a representative thematic map for the emotions capability is shown in appendix e. identifying themes within subsamples the two samples of ots (those who work in the area of mental health and those who work in pediatrics) were selected to identify themes within these practice areas (appendix f provides an example of how themes within subsamples can be identified). initially, the comparison of the transcripts was done with color coding to show differences and similarities between the two samples (appendix f). participants from the two samples noted that chfcs: ) reflect occupational therapy models or approaches such as client-centered approach or the canadian occupational performance model (shown in grey), ) are applicable in occupational therapy practice (shown in yellow), ) are interesting (shown in dark blue), ) are about basic human rights and needs (shown in blue), ) are important to ots work with mental health (shown in purple), and ) are about improving an individual’s function which reflects the goal of occupational therapy practice (shown in green). no differences were found between the two subsamples. comparing themes across samples first, the themes that emerged from two samples of ots were compared and contrasted. then, each transcript was re-read by the researcher to ensure the themes applied across the data set. she would make notes in the margins for later reflection about a theme’s relevance. creating themes the themes that showed a distinction between the two samples of ots, were rewritten for maximum clarity. the researcher asked herself such questions as: • can i read each of the transcripts and clearly see that a given theme is present or absent? • is the theme presented with the fewest concepts possible? • have i reduced the number of themes as much as possible without losing their meanings? if there was no clear differentiation between the themes, it was dropped from further analysis. this process clearly defined what the themes were and what the themes were not as noted by braun and clarke ( ). 	
   	
   ensuring credibility as part of the transcription process the integrity of the data was preserved by listening to the transcriptions several times as previously described, and using an additional transcription service to double check the transcripts to ensure accuracy. vrious strategies have been suggested to ensure the credibility of qualitative research findings. creswell ( ) recommends that at least two of following eight procedures be incorporated: . prolonged engagement and persistent observation in the field; . triangulation, which makes use of multiple and different sources, methods, investigators and theories to verify study findings; . peer review or debriefing, in which a peer asks the investigator hard questions about methods and interpretations to enhance the credibility; . negative case analysis, in which the researcher refines the working hypothesis as the inquiry advances in light of disconfirming evidence; . clarifying researcher bias, in which the researcher clarifies past experiences and biases so that readers understand the researcher’s position and any assumptions; . member checks, in which the researcher has participants verify findings and interpretations; . rich, thick description, which allows readers to determine whether the finding can be transferred to other settings; and . external audits which allow an external consultant to examine the process and findings of the study. for the purpose of the present research, four of these strategies were thought to be most relevant to the data set, namely, thick description, clarifying researcher bias, peer review, and triangulation. thick description is a method for enhancing the quality of research by quoting the participants’ exact words. this method was employed to allow the reader to determine the accuracy of interpretation. clarifying researcher bias is indicated because the researcher is the key instrument of the data collection, and her biases may threaten the credibility of data (patton ; creswell, ). although there is no personal neutrality in conducting a research, it is important “to assume he or she knows nothing about the phenomenon under study and start gathering data from a fresh 	
   	
   perspective with his or her “eyes open” (asselin, , p. ). steps were taken to identify the personal biases of the researcher, in her role as the primary investigator. a few methods were applied in this study to minimize the risk of researcher bias in the data analysis. first, her biases and assumptions were identified and documented. second, memo writing provided an opportunity to reveal her biases and assumptions. according to krefting ( ), writing a field journal is a way that researchers can be aware of their biases and assumptions. the field journal “reflects the researcher's thoughts, feelings, ideas, and hypotheses” (p. ). through this stage, the researcher decided to write her assumptions and any thoughts that might impact on the research process. her reflections revealed that she had some assumptions about the relevance of the chfcs to occupational therapy practice. these assumptions included: ) chfcs can enhance client-centered occupational therapy practice, ) chfcs would be well-defined concepts for ots, ) chfcs was a new approach for ots, and ) ots struggled to explain how the chfcs could be relevant to occupational therapy practice. some assumptions were challenged during the interviews, thus encouraged her to remain open to the experiences and perspectives of the participants. based on her assumptions, the researcher attempted to minimize her biases. for example, during the interviews, she learned that although the capabilities approach was a new approach for ots, they did not perceive the chfcs as new concepts in the context of occupational therapy. ahern ( ) described the importance of identifying anything new or surprising in the data collection or analysis. some of the unexpected data that the researcher identified included: the range of definitions of the chfcs provided by the study participants, and the diversity of their professional settings and practice areas. finally, the researcher attempted to minimize her biases in order to explore the experiences of the participants in an authentic manner and enhance the credibility of this research. peer review although creswell ( ) suggested that using a peer-review strategy helps the researcher to ensure the credibility of qualitative research findings, some scholars believe peer- review can be subject to biases. mahoney ( ) criticizes the assumption that peer-review can be considered as “an adequate and objective process” (p. ). he asserted “confirmatory bias is the tendency to emphasize and believe experiences which support one's views and to ignore or discredit those which do not” (p. ). 	
   	
   thus, peer-review can prejudice not only because there are distinct areas of science and schools of thought, but also because of the irrational component of the nature of science. kuhn ( ) shows how extra-scientific factors such as social, political, and religious factors influence the outcome of scientific debates. accordingly, some reviewers might be influenced by their adherence to a certain opinion and opposite view to others, and reject other views based on irrational elements. consequently, in the current research, it was difficult to choose unbiased reviewers. therefore, a member of the supervisory committee agreed to review the researcher’s decision-making process regarding the selection of relevant themes from the quotes. the researcher created records detailing the various stages of analysis and the rationale for her decisions with respect to coding and creation of themes. the member of the supervisory committee also wrote summaries of the meetings with the researcher and the decision making process. triangulation denzin ( ) identified four types of triangulation: data triangulation, investigator triangulation, theory triangulation, and methodological triangulation (plano clark & creswell, , p. ). data triangulation and investigator triangulation were used to collect data in this study. patton ( ) provided examples of data triangulation such as “comparing what people say in public with what they say in private”, and “comparing the perspective of people from different points of view” (p. ). in this study, triangulating data from various sources (ots who work in the area of mental health and ots who work in pediatrics) and the different points of view (occupational therapy practitioners, educators, faculty members, and administrators) helped the researcher present the results from multiple perspectives. investigator triangulation involved comparing the line-by-line coding of responses with a member of the supervisory committee. the areas of agreement and disagreement were identified and examined across themes. producing the report the findings of phase one provided an enriched understanding of the relevance of the chfcs to occupational therapy practice. the findings of this qualitative phase included parts and categories consisting of themes when written into a cogent report of findings. this is detailed in the . section. 	
   	
   . . trustworthiness there are varying views about how rigor can be achieved in qualitative research. some qualitative researchers, such as altheide and johnson ( ) and leininger ( ), claimed that reliability and validity are relevant to quantitative research and entirely inappropriate terms in qualitative inquiry (morse et al., ). according to such researchers, reliability and validity stem from positivist paradigm that seeks objectivity, while qualitative approaches stem from a post-positivist paradigm that acknowledges the existence of multiple realities and meanings (morgan, ; winter, ). other qualitative researchers assumed new criteria for ensuring rigor and determining reliability and validity in qualitative research (morse, ). they suggested using terms such as 'trustworthiness', 'worthy', 'relevant', 'plausible', 'confirmable', 'credible' or 'representative', believing that these are more appropriate terms in qualitative research (winter, ). lincoln and guba ( ), for example, replaced reliability and validity with “trustworthiness”. according to them, trustworthiness consists of four aspects: “credibility (parallel to internal validity), transferability (parallel to external validity), dependability (parallel to reliability), conformability (parallel to objectivity)” (markula & silk, , p. ). we explain these aspects within specific methodological strategies for determining rigor in phase one of our study. to increase credibility, the researchers can ask themselves “how can one establish confidence in the ‘truth’ of the findings of a particular inquiry? ( lincoln & guba , p. ). as discussed earlier, credibility in phase one is enhanced with the use of strategies such as thick description, clarifying researcher bias, and triangulation (see ensuring credibility section). to increase transferability of the findings of a qualitative study, it is useful the researchers ask themselves the question of “how can one determine the extent to which the findings of a particular inquiry have applicability in other contexts or with other subjects (respondents)” ( lincoln & guba , p. ). researchers can apply some strategies; such as thick description and purposeful sampling, to enhance transferability of the data (jensen, ). the researcher in the present study provides the reader with a full description of the participants (see participation description section and table . .) and by quoting the participants’ exact words. also, purposive sampling was employed to enhance the understanding of the meaning, relevance and applicability of the chfcs to occupational therapy practice to the participants, and to 	
   	
   maximize the chance of acquiring a range of perspectives based on the participants’ diverse experiences, educationally and professionally (patton, ; minichiello et al., ). participants were selected because they most represent the research design to enhance the potential that readers can assess the degree of transferability to their given context. qualitative researchers are concerned with the dependability of their work rather than replicating it. lincoln and guba ( ) cited that in qualitative research, the researcher has to ask the question of “how can one determine whether the findings of an inquiry would be repeated if the inquiry were replicated with the same (or similar) subjects (respondents) in the same (or similar) context?” (p. ). bozinovski ( ) noted “any techniques which bolster credibility (e.g., triangulation) will also improve dependability” (p. ). in our study, the researcher used triangulation to enhance the creditability and dependability of the data (see ensuring credibility section). dependability also means that the research cannot be absolutely assumed a priori (jensen, ). the researcher can enhance dependability of a qualitative inquiry by describing the changes in context and circumstances, and providing rationale for doing the changes. the researcher needs to “track all of the notes that differ from the design in the proposal” (jensen, ). dependability in this phase also was enhanced by changes to the recruitment procedure (the researcher first used a maximum variation sample to gather the most varied information possible from the participants to reflect the possible diversity of opinions. the researcher attempted, unsuccessfully, to recruit men as participants to the study, so she used purposive sample). initially, the researcher’s supervisory committee agreed that a sample of to interviewees would capture an appropriate sample size to obtain various perspectives. because the topic of this study was new, reaching a clear saturation point took longer, so the researcher continued interviewing participants until data saturation has been achieved (n= ). also, in the proposal, we used a thematic analysis method based on a five-stage process described by ritchie and spencer ( ) (i.e., familiarization, identifying a thematic framework, indexing, charting, and mapping and interpreting) for analyzing the data in phase one. for more accurate analysis, the researcher decided later to use the nine-step process by combining the guidelines of braun and clarke ( ) and boyatzis ( ) for conducting thematic analysis. the researcher’s supervisory committee reviewed all modifications, and the rationales for changes to ensure the dependability of this phase of the study. 	
   	
   conformability is concerned with “how can one establish the degree to which the findings of an inquiry are determined by the subjects (respondents) and the conditions of the inquiry and not by the biases, motivations, interests, or perspectives of inquirer?” (lincoln and guba , p. ). according to bozinovski ( ), “triangulation and keeping a reflexive journal also increase the likelihood of conformability (p. ). to ensure conformability in this phase, steps were taken to understand the chfcs from the perspective of the research participants by providing quotes from the interview transcripts, using triangulation, and identifying the personal biases of the researcher and minimizing them (see section . . conducting thematic analysis). . findings this section is organized into eleven parts. the first ten parts describe ots’ views as related to each of the ten capabilities, namely, life; bodily health; bodily integrity; sense, imagination, and thought; emotions; practical reason; affiliation; other species; play; and control over one’s environment. the eleventh part describes the ots’ views of nussbaum’s ten chfcs, overall. the findings are described in relation to the two research questions for each capability. within each capability, the themes that emerged are described in detail. these are as follows: ) life capability question i) what are ots’ understandings of life capability? themes: • basic human rights • quality of life • longevity question ii) how may life capability be relevant to occupational therapy practice? themes: • quality of life • working with people with mental health issues • working with seniors • acute care, palliative care, and end of life care 	
   	
   ) bodily health capability question i) what are ots’ understandings of bodily health capability? themes: • basic human right • health promotion • interconnected with the life capability question ii) how may bodily health capability be relevant to occupational therapy practice? themes: • promoting health and preventing diseases • feeding and/or eating • addressing physical health for those with mental illness • advocating for adequate shelter and basic nutrition • uncertainty about managing reproductive health ) bodily integrity capability question i) what are ots’ understandings of bodily integrity capability? theme: • basic human rights question ii) how may bodily integrity capability be relevant to occupational therapy practice? themes: • client-centered approach • an advocacy perspective • providing (emotional) trauma-informed care • addressing mobility issues • referring clients to resources ) sense, imagination, and thought capability question i) what are ots’ understandings of sense, imagination, and thought capability? theme: • expressing oneself in various ways question ii) how may sense, imagination, and thought capability be relevant to occupational therapy practice? 	
   	
   themes: • self-expression • people with mental health issues • children with disabilities ) emotions capability question i) what are ots’ understandings of emotions capability? themes: • basic needs and rights question ii) how may emotions capability be relevant to occupational therapy practice? themes: • people with mental health issues • children with disabilities • all those seen by ots • finding support systems • helping people manage their emotions • teaching anxiety management skills ) practical reason capability question i) what are ots’ understandings of practical reason capability? theme: • making personal decisions question ii) how may practical reason capability be relevant to occupational therapy practice? themes: • a client-centered perspective • providing educational and supportive strategies ) affiliation capability question i) what are ots’ understandings of affiliation capability? themes: • basic needs and rights • social relations question ii) how may affiliation capability be relevant to occupational therapy practice? 	
   	
   themes: • helping clients to identify their interests • developing friendships, social network, and social skills • advocating for their clients • working with clients with mental illness ) other species capability question i) what are ots’ understandings of other species capability? theme: • the environment question ii) how may other species capability be relevant to occupational therapy practice? themes: • relationship with animals and nature affects health • a spirituality perspective • a client-centered perspective • an environmental perspective • is not the main focus of occupational therapy practice ) play capability question i) what are ots’ understandings of play capability? themes: • human happiness • preserves quality of life • achieves a work/life balance question ii) how may play capability be relevant to occupational therapy practice? themes: • a primary therapeutic approach in pediatric practice • a therapeutic approach when working with persons with mental health issues • its importance for everyone ) control over ones’ environment capability question i) what are ots’ understandings of control over ones’ environment capability? themes: 	
   	
   • decision-making • a basic human right • political opinions question ii) how may control over ones’ environment capability be relevant to occupational therapy practice? themes: • developing decision-making • helping clients gain and retain employment • advocating for their clients ) general views question i) what are ots’ general understandings of the ten chfcs? themes: • a new approach • a range of occupational therapy practices • more theoretical than practical • more related to mental health practice • the construct of function is common to the chfcs as well as ot models • they overlap question ii) how may chfcs be relevant to occupational therapy practice? themes: • the canadian model of occupational performance • the human occupational model • the person environment occupation model • a client-centered approach • a recovery approach • a human rights model • maslow’s hierarchy of needs • a social justice model • an advocacy approach 	
   	
   . . life capability this part aims to explain the views of ots of the life capability related to the two research questions: question i) what are ots’ understandings of life capability? the participants were asked about their understandings of the life capability based on nussbaum’s definition and three themes emerged: basic human right; quality of life; and longevity of life. the following describes the quotes that support these themes. i) a basic human right one of the perspectives from which the majority of participants addressed life capability was to see it as “basic human rights”. here basic human rights include both rights and needs, meaning everyone has the right to life as a basic human right and to have basic needs met. right to life as a basic right was described as the right to live to the end of a normal human life, right to be free from dying early, deadly violence, suffering, and famine. a number of participants indicated that life capability is relevant to ot practice. they described it as a basic human right. i think that’s sort of a basic principle. (participant , p. ) i think that it’s a general human right, and so to me, it’s a right…(participant , p. ) life capability was also described as a basic need that is consistent with survival and having access to basic things; such as, foods, shelter, and health. life capability was said to be necessary for achieving healthy well-being. …the basic things that are required for health, access to housing and water and medical care, and food. (participant , p. ) ii) quality of life the second perspective from which some participants addressed life capability was to see it as “quality of life”. …it’s also i think the quality of life. (participant , p. ) …[it] is certainly about, well it is quality of life. (participant , p. ) ..it is a basic quality of life that everybody should be able to achieve. (participant , p. ) there were multiple meanings of quality of life from the point of view of the participants. participant described it as, …it should be more about the quality of life as opposed to the length of life. (p. ). 	
   	
   while participant described quality of life as, …i think there’s much more of an understanding and approach to looking at the life and the quality of life and if it’s worth living or not ...(p. ) the term “life worth living” was ambiguous for some participants. participant critiqued it from the perspective of bioethics. the other thing that frightened me was the term “life is so reduced as to be not worth living”. it doesn’t say according to the person of whose life is being discussed. who decides when a life is worth living or not? who decides if that person must stay alive because their life is worth living or doesn’t need to stay alive because it isn’t worth living? (p. ) the phrase “life worth living” also was critiqued from the perspective of the tension between universalism and cultural doctrine. participant referred to the differences between western and eastern cultures that largely influence the western understanding of “life worth living”. …i always critique things from a universal perspective of how relevant is this to everybody, because presumably it’s a western developed theory and so how relevant is it to people who live in non-western contexts or to indigenous people. (participant , p. ) iii) longevity of life the third perspective from which some participants addressed life capability was to see it as longevity. some participants noted that life capability is about both quality of life and longevity. they asserted that the lifespan of people with disabilities may be shortened. for example, participant noted that, we know that people living with mental health issues are not living a long life. they are living a shorter life … they’re dying a lot more early than typical population. life is reduced, so therefore, it’s the longevity of life but it’s also i think the quality of life. (p. ) participant also mentioned suicide as an example of dying prematurely in people in mental health issues. in mental health, dying prematurely might be related to suicide. (p. ) some pediatric ots also asserted that life capability is about “a normal life expectancy”. participant expressed that, obviously, we want to be able to live a normal life and, you know, feel that is worth- living, but i am working in pediatrics with children with a huge variety of either diagnoses or disabilities, or, there’s a lot of cases where those kids would not be living at, sort of quote: “a normal life” or, that there is a good chance that they going to be dying 	
   	
   prematurely, and yet i would still hope that they’re having a life that is worth-living, and that there is lots of great things for them in their life, despite the fact that their lifespan may be shortened. (p. ) in addition to disability itself that reduces life expectancy, some participants indicated that some socioeconomic factors affected life span. …there are a lot of people in our society, in canada for example, whose life expectancy is less, based on their social economic status, living conditions, ethnicity maybe, gender, right?...yeah so, and those people, are they able to live to the end of their life of normal length, not dying prematurely? (participant , p. ) question ii) how may life capability be relevant to occupational therapy practice? the results described the four themes on the relevance of life capability to occupational therapy practice. these were: quality of life; working with people with mental health issues; working with seniors; acute care; and palliative care and end of life care. the following describes the quotes that support these themes. i) quality of life almost all participants agreed that increasing and improving clients’ quality of life is a priority of occupational therapy practice. they asserted that the life capability could be relevant to occupational therapy from quality of life perspective. [life capability is relevant to occupational therapy] only if you look at it from the quality of life perspective. (participant , p. ) some participants asserted that ots’ focus is on promoting the quality of life of their clients rather than the longevity. … ots would go further to not just to live a human life of normal length, but ots, i think understand that it’s to promote people’s quality of life. it’s not just to encourage people to live length of lifespan, in fact we more focus on quality more than quantity. if somebody in fact has disability or progressive illness and cancer or whatever, something that you know they’re going to deteriorate very soon and there’s not much that we can do, then the ot is not going to be focusing on the normal focus, not trying to have them live a certain number of years but actually whatever number of years that they have, try to promote their quality of life. (participant , p. ) some participants who work in acute care also agreed that ots attempt to maximize the quality of people’s lives even if they are dying. ot’s about the quality of life, not the length of life, now those two go together, but i work on a ward where people are dying and it becomes, it strips it down to the basics of what’s important to the person, and its quality not length. (participant , p. ) 	
   	
   one participant noted ots maintain the clients’ quality of life by providing a supportive environment as described in the following: i think so because the whole idea is what we want to do is maximize the quality of people’s lives and that we do that through prevention, through restoration, but i also think that we work in palliation and that we are concerned with the quality even when someone is at the end of life, and it doesn’t matter where on the age range that is, that we have a view about what’s comfortable for that person and we work with that person to try and decide that so that time at any stage of the spectrum of life is maximizing that person’s goals that they set for themselves, and we facilitate that. (participant , p. ) participant explained that occupational therapy programs and public health have overlapping goals with respect to increasing the clients’ quality of life. i think ot and public health have a lot of links in terms of being able to, we’re trying to educate clients, or doctors or whoever to, about increasing health through all stages, so diabetes prevention or whatever it might be, trying to encourage people to eat well, live healthy, etc., to try increase their quality of life. (p. ) some participants stated that ots increase the quality of life through promoting health and preventing injury. participant noted that ots have roles in the area of chronic disease management, and implementing self-management programs. well first of all we have a role in, i think in primary health care, so making sure that people are living actively and well, if they are well and maintaining their health, and then if they are in the whole area of chronic disease management, we have a role as well. again, helping people live well with a chronic disease and be involved in self- management programs and have access to the information that they need to live well, so yeah, i saw it really compatible with ot [occupational therapy]. (p. ) some participants expressed that ots try to maintain their life as high quality as possible by giving the clients tools and strategies to participate. participant mentioned that ots help their clients use assistive technology, such as wheelchairs, to improve social participation and exercise control over their environment. well, most of our kids may technically not be able to participate in some things because of their disabilities, but they still may want to. especially, you know, when the younger children are often influenced by their peers, or it’s such an important time for social interaction and so, we want to, whether it’s putting the equipment in place or compensative strategies or something helping them to still be able to participate in all those things and i think that is a part of quality of life. (p. ) 	
   	
   quality of life is about improving a life worth living from a few participants’ point of views. some participants stated that ots have important roles in helping people “adjust to a major trauma” and cope with their disabilities. …so we’re mostly seeing people after the ill-effects after the disease or an accident, but certainly from this “so it’s not reduced to be not worth living”, that’s a huge role that we play, helping people adjust to a major trauma or a major loss of independence. (participant , pp. - ) ii) working with people with mental health issues some participants who described life capability as longevity asserted that it is relevant to ots who work with mental health illness as it impacts on their work, and their clients’ health and wellness issues. so people i know who live with mental health issues, literature indicates that people die years earlier as a result of having mental health issues, so definitely that [life] capability has huge impact for the kind of work that we do and it has impact in particular around health and wellness issues. (participant , pp. - ) as cited before, some participants noted that people with mental health illnesses’ lifespan may be shortened, and they are dying earlier compared to typical population. suicide was mentioned as an example for dying prematurely in people with mental health illnesses. occupational therapists develop interventions to help people have a longer life through exploring their world and their perceptions related to life. but i guess also if you’re working in mental health, so looking at some individuals who are suicidal and working with them, exploring what their perceptions are, and what their rationale is. why do they see that as a real option and then being able to help them look at other options? (participant , p. ) in mental health practice, a number of participants noted, ots help clients enjoy a longer life through meaningful engagement in occupation and providing various perspectives about what constitutes meaningful engagement. but, as an occupational therapist, working with them on establishing what is going to be the most meaningful occupations for them to be pursuing, given their time. and strategies for maybe having a different perspective around how they’re dealing with that. so if it’s someone who’s depressed, perhaps, and lacking motivation to do anything, because of the imminent, they have a medical condition and they think life has ended as they know it, and helping them to explore...well really, there’s other things they could be doing, and what would be meaningful for them – like to explore that with them. perhaps to have the different perspective. and maybe to be more meaningful for them…(participant , p. ) 	
   	
   some participants mentioned that ots support clients to have a longer life by helping them overcome various barriers. for example, reducing side effects of medications, and helping clients to be employable and have housing. i think it’s to develop interventions that help people have a longer life, so to take away some of the barriers, because people who are on medication, we know that they may have increased heart troubles, they may gain weight, so part of it is to take away if we can, as some of the impacts of that medication to some somehow reduce the negative determinant such as poverty, so to help people have an income, for people who live on substance abuse, to ensure people to get things like housing. (participant , p. ) iii) working with seniors some participants asserted that life capability is relevant to ots who work with elderly when using appropriate accessibility and fall prevention strategies to promote the elders’ life capability. for example, absolutely, i think that aging and dementia and being able to care for our elderly and our seniors with dignity and compassion is very much part of our role as an ot [occupational therapist]…[we] looking at being able to offer appropriate accessibility. (participant , p. ) i think probably just being able to support life, generally through provision of say like fall prevention strategies in the home to prevent people from falling which increases chances of early death or things like that, so there’s different things we do in the environment for example that might help…(participant , p. ) some participants noted that the philosophy of residential care is to preserve life worth living. occupational therapists prevent further medical problems in residential care and attempt to balance prevention and freedom. participant described how ots can improve the residents’ abilities in the following, ..[it] would be a philosophy in residential care – to look whether one’s life is worth living and not having people die prematurely from, for example: bladder infections that are easily curable, and pressure sores that could be prevented, so there’s a lot of this approach to preventing some of the other untoward consequences of illness and immobility. (p. ) participant stated that although ots can develop many interventions to increase their clients life capability, there are barriers. for example: …but it’s so very difficult, just because the workload is high everywhere. (p. ) 	
   	
   iv) acute care, palliative care, and end of life care some participants who addressed life capability as longevity perceived that maintaining life and enhancing the life capability is more related to occupational therapy practice in acute care, palliative care, and end of life care settings. well, the goal is basically to have a normal life expectancy, so doing whatever you can to facilitate that, i would think. maybe if you were in a more acute care model; that would be probably maybe a higher priority. where you’d actually kind of work on specific strategies for that… if you were working on palliative care team, or working on a hiv/aids program, …you would actually be going through some very specific strategies that would maintain life, and longevity. (participant , p. ) participant mentioned that ots’ main focus is to increase people's quality of life through reducing their pains and stresses in palliative care. …i also think that we work in palliation and that we are concerned with the quality even when someone is at the end of life, and it doesn’t matter where on the age range that is, that we have a view about what’s comfortable for that person and we work with that person to try and decide that so that time at any stage of the spectrum of life is maximizing that person’s goals that they set for themselves, and we facilitate that. (p. ) also, participant stated ots’ increase people's quality of life through exploring what actually would be meaningful for the clients and helping them to achieve their goals in palliative care. so someone who has hiv or someone who’s in a palliative care situation, they have cancer, their life is probably going to be shortened. but, as an occupational therapist, working with them on establishing what is going o be the most meaningful occupations for them to be pursuing, given their time. (pp. - ) one participant highlighted the ways that ots are involved in the end of life care by helping individuals to be comfortable and supporting end of life care. i think that one in particular is quite relevant to palliative care. we’re looking at sort of helping individuals be able to be comfortable, especially in the end component of human life and looking at how we can do to help, whether it’s health promotion as well, to look at increasing the amount of life that people have, by preventing diabetes and things like that, as well as the palliative care aspect in supporting life in the end. (participant , p. ) . . bodily health capability this part describes the themes that emerged from the analysis of the interviews in answering the two questions: question i) what are occupational therapists’ understandings of bodily health capability? 	
   	
   three themes emerged: basic human right; health promotion; and interconnection with the life capability. the following describes the quotes that support these themes. i) basic human right according to participants, the bodily health capability refers to the right to be physically healthy, to have shelter and sufficient food, and is essential and worth achieving in ots’ interventions. my general understanding it’s sort of, it’s the basics, you know, it mentions: shelter, and i think working in pediatrics, you see this a lot, that you want before we can even attempt to look at what the ot goals are, we need to know that our kids have a safe place to live, that they have food, loving caregivers. the basic needs, exactly… (participant , p. ) that’s absolutely an ot value. if people’s basic health needs are not being matched with food and shelter, for sure… (participant , p. ) …it [bodily health capability] is a basic human right and function… (participant , p. ) people with disabilities are more likely to experience failure in being healthy and being able to meet their basic needs. suggesting participant stated: “so many of our clients are not in good health.” (p. ) ii) health promotion one of the perspectives from which some participants addressed the bodily health capability was to see it as health promotion, wellness and lifestyle management as in: bodily health, i think probably just similar to life or with health promotion. (participant , p. ) well, good health, i think this reminds me a wellness, good health being adequately nourished like that…they remind me how ot concern with people kind of lifestyle and life style management. (participant , p. ) some participants described bodily health capability as the physical conception of health that includes nutrition, exercise, and sleep. to me it seemed to be a very physical concept of bodily health, body as is in physical…(participant , p. ) so having good health is again… certainly i know, within mental health, we talked a lot about nutrition, exercise, and sleep as just the basics of good health. (participant , p. ) iii) interconnected with life capability 	
   	
   some participants indicated that bodily health capability was to overlap with the life capability as both are about basic rights and needs as well as related to health promotion. …it relates to the life capability. (participant , p. ) for bodily health, i think probably just similar to life or with health promotion. (participant , p. ) that kind of fits in with life. i guess i kind of rolled them both in. (participant , p. ) question ii) how may bodily health capability be relevant to occupational therapy practice? the results described the five themes that emerged from the analysis of the ots’ perspectives on the relevance of bodily health capability to occupational therapy practice. these were: promoting health and preventing diseases; feeding and/or eating; addressing physical health for those with mental illness; advocating for adequate shelter and basic nutrition; and addressing reproductive health. the following describes the quotes that support these themes. i) promoting health and preventing diseases some participants mentioned that the bodily health capability is more relevant to occupational therapy from an international perspective. they indicated that enhancing the bodily health capability is related to ots and other health professionals who work in poor areas. for example: i was in africa and i was working with mothers who knew nothing about being able to offer clean drinking water to their babies, boiling water, rehydration. they had no concept of how to meet basic very, very basic health care needs for their young children under a year of age, so i found myself in a role of being able to advocate for health and prevention availableness through making appropriate suggestions. i don’t think its unique to ot i think anybody in any health care profession, nursing or physician would be doing the same but, i have done that as an ot in the past. (participant , p. ) some participants asserted ots have significant roles in health promotion, diseases prevention, weight management, and obesity prevention areas. participant mentioned ots’ roles in healthy living programs in the community including managing chronic disease, and promoting exercise and smoking cessation. “being able to have good health”, this is an area that i think there is a huge role for ot but very few ot’s have jobs in that area. so, for example, we have a healthy living program here in the community and it’s around, a lot around managing chronic disease, 	
   	
   and it’s around, you know, managing your respiratory problems, and it’s also around the determinants of health so eating right, exercise, stopping smoking, that kind of thing, and i feel very strongly that ot’s have a huge role in this. (p. ) one participant highlighted ots try to ensure that their clients have appropriate nourishment through education programs. … being adequately nourished, [ots] doing swallowing assessments, doing, educating families and whatnot, on the importance of eating and living well, which helps with management with a whole bunch of chronic diseases. (participant , p. ) participant indicated that ots are involved in lifestyle management. so i believe, ots to my knowledge, being a real facilitator, not in prescribing what they should eat but how they’re going to eat what they’re supposed to or what they want to and how they’re going to integrate that into a healthy lifestyle. so i think that there’s a huge role…(p. ) participant mentioned that ots not only help clients have a healthy lifestyle but also promote the health of families. …in the nursery which is a highly abnormal environment for a neonate. the baby’s not supposed to be here yet. ots are involved in creating an environment that supports normal development and that also supports family interaction and promotes health for the family but also the baby, so we are part of that team that tries to, i’m not going to use the word normalize, because it’s never going to be a normal environment, but tries to have an environment that is supportive of a healthy life, as much as possible. (p. ) participant declared that ots provide the necessary skills for their clients to engage in self- care, leisure, and productivity to effect healthy lifestyles. …i mean we do have a role in that as well and being able to have good health, i mean that’s a part of our self-care, teachings and chronic disease management or general education once somebody has an illness, at this site, my three sites...i would see it, i mean if someone is living with a chronic disease, for example making sure that managing their life style, so balancing productivity, self-care, and leisure. (pp. - ) ii) feeding and/or eating participant asserted that ots work with children who are not reaching their developmental milestones adequately and have problems maintaining bodily health. children with autism tend to have feeding challenges. they tend to have difficulties with metabolizing nutrients … that children with autism have difficulties maintaining good bodily health. they tend to be very sick which is tied in to nutrition and food allergies and how the brain is processing, what’s happening with diet. (p. ) 	
   	
   participant stated that ots have major roles in addressing feeding issues to help maintain their clients’ bodily health irrespective of the reason for failing to thrive. …there are other therapists that address what their [clients] feeding issues are, and trying to figure out ways that keep them gaining weight or of an adequate weight so that they’re not...more ill. so, i think, ots definitely have a very strong position on that, especially around feeding issues. on a feeding team. so that would be bodily health on a very basic level. (pp. - ) participant claimed that having an interdisciplinary approach enables ots to practice in various areas including working with clients who have feeding problems. there’s some specific roles that the ots have and some of that currently, so for example to be “adequately nourished”, the ots do work with speech language pathologists and nutritionists to see that the person is able to eat and swallow safely. the feeding, so that’s a big one. …so we have to have an interdisciplinary approach which is really consistent with the way we try to practice in any way in my settings, the community setting. (p. ) participant also pointed out that ots have a more consultative role to help clients with feeding difficulties. she noted that ots try to ensure appropriate feeding for their clients through healthy eating recommendations. it is in terms of like, say for example, to be adequately nourished, in terms of swallowing, so ensuring that people are able to eat a diet that’s appropriate to their needs, and ensuring that, take for example, they have appropriate nourishment to help them from developing pressure ulcers or helping with healing, that would be through eating a better diet or what not. (p. ) iii) addressing physical health for those with mental illness many participants perceived that ots address bodily health capability in mental health practice. certainly i know, within mental health, we talked a lot about nutrition, exercise, and sleep as just the basics of good health. and so, i think that there’s a connect between this and ot…(participant , p. ) a few participants mentioned that maintaining good bodily health of people with mental health issues is one of ots main concern in mental health occupational therapy practice. wellness, so people are eating, sleeping, these are very important eating, sleeping and getting good exercise. my patients [people with mental health issues] will always talk about things like that…as things that they want to do, need to do, they desire doing. they want to be in good physical health. and i think that programs who are focus on mental health are increasingly addressing these issues as well. helping people to maintain good bodily health and it maybe particularly important because there are side effects of medications like people who have mental health issues, taking medications and 	
   	
   those medications may cause people to gain weight and things like that…so it is a priority concern for the patients themselves and as a result i think it becomes concern also for the therapists for working with them. (participant , p. ) one participant noted that people with disabilities, specifically people with mental health issues, are much less likely to have good physical health. so, people generally may have more poor health as result of living with mental health issues. (participant , p. ) iv) advocating for adequate shelter and basic nutrition according to some participants, ots advocate for basic resources to help clients take care of themselves more independently. occupational therapists advocate for promoting the health of their clients including adequate shelter and adequate nutrition. …we spend a lot of time around adequate shelter, mental health and physical dysfunction, around adequately nourished, i mean we do have a role in that as well and being able to have good health. (participant , p. ) participant noted that ots have advocacy roles in addressing shelter issues for people with disabilities. yeah, adequate shelter. yes, ots are involved, in mental health, with keeping people in housing and so in practice, i can see that this is an important construct. you know, that they would be adequately housed….[ots] help to assess people with mental health issues to the appropriate level of housing that they may require. what kind of care needs they might need, whether they need assistants or you know the different kinds of housing – there’s supported or independent living. there’s totally independent living, but financially supported. so they would assist in that process of helping to find people housing. (p. ) participant mentioned that the supported housing program enables people with mental illness to establish independent housing in the community. some people who work in housing and provide functional assessments to ascertain the kind of support people would need. some ots advocate for housing first model which is a best practice within mental health and to ensure that people have access to housing because we know that’s one of the determinants that makes a profound difference to people’s life, both in longevity and quality of life and one of my roles is being health coordinator for our system so that means developing services and supports around wellness issues for people with mental health issues. …so the ots may not be delivering the service but as an ot, i’m helping to develop those services for people within our systems. (p. ) 	
   	
   participant noted that access to safe shelter has a direct impact on pediatric nourishment and development. so one example is, i go into a school that’s on a first nations reserve and there’s a little boy there who unfortunately was apprehended away from his mother and placed with his grandparents, and since he has been with his grandparents, he has been getting more sleep, more food and coming to school on a regular basis and those basics we’re seeing a huge impact on his developmental progress. he’s talking more, he’s more attentive and he’s definitely learning more easily then he was before. (p. ) participant indicated that ots work to ensure ready access to adequate shelter for those in need. in order “to have adequate shelter”, yes, in our community setting, we do have. we have case managers who work a lot with clients who have ots of needs around their personal care and their living arrangements…ot would be working with the person wherever they live and try to enable them to do the best they can with that. (p. ) v) uncertainty about managing reproductive health although the majority of participants mentioned ots’ roles in addressing feeding challenges and advocating for shelter, some were unsure about their roles in addressing reproductive health, as noted by participant : i am not aware of ots who are involved with reproductive health. (p. ) some suggested that ots do not address reproductive health issues in their practices. …but reproductive health, i thought, you know what? we just don’t address that in ot practice and i question whether we are the best people to be addressing it. (participant , p. ) in contrast, some stated that ots work with sexual health teams. participant indicated ots have a role in reproductive health when working with adults and teenagers. yeah, and then reproductive health, again not an area i’m familiar with, but i do know there are therapists that work on sexual health teams, or sexual health resources. especially for, not just adults, you know teen, or kids that i work with; they have a lot of questions, their bodies look different, they may be perceived as being very different. and they may or may not be of the understanding of other people around sexual health, and sexual development... so making the necessary connections for the family and for the health professionals to understand this family’s particular situation. (p. ) participant also noted that reproductive health is relevant to occupational therapy practice as ots are committed in principle to advancing the health and lives of their clients across occupational domains. 	
   	
   i mean if someone is living with a chronic disease, for example making sure that managing their life style, so balancing productivity, self-care, and leisure. there are lots of ot’s who work in sexual health, so managing a nice healthy sex life following an injury or illness. (p. ) . . bodily integrity capability this part aims to explain the ots’ views on the bodily integrity capability with respect to the two research questions: question i) what are occupational therapists’ understandings of bodily integrity capability? analysis revealed an overarching theme of basic human rights. the following describes the quotes that support this theme. i) basic human rights almost all participants acknowledged that the bodily integrity capability in many ways is consistent with people’s rights as citizens and includes both moving freely from place to place, and protecting one’s body against violations, abuses, and harms. some participants emphasized this opinion: i see it as a human right. i mean that is, something that everybody has a right to not have, you know, sexual or physical abuse against their body. so, in terms of this, i saw it as a basic human right…(participant , p. ) some people with disabilities are more vulnerable and less able to protect their bodies against physical violence and sexual abuse. a few participants who work with children with disabilities described that these clients are at risk of violation of body integrity. …many of the kids that i’m working with have physical disabilities and are probably quite vulnerable in a lot of ways. (participant , p. ) some participants who work with clients with mental illness suggested that these clients have distinct needs. participant stated that in contrast to common views that people who live with mental health issues are violent, they are several times more prone to violence against them. she mentioned that many women and children with mental health issues have histories of sexual assault, child abuse, and domestic violence in their backgrounds. she perceived that people with mental illness have less capability of maintaining bodily integrity and cannot move freely from place to place, and thus lose their rights as citizens. moving freely from place to place around, i think it’s citizenship. so, citizenship is a huge issues for people who live with mental health issues because stigma and discrimination, people may not feel welcome or may not participate in things like 	
   	
   libraries, community centers. so they may feel like they’re not able to move about as freely as they would like. also, when people are not well. they may be certified to hospitals, so that’s a time when they really don’t have freedom to make choices, so they are medicated against their will, they are isolated against their will in hospitals, so that’s a time when lose their rights as a citizen. (p. ) participant noted that bodily integrity capability is an important issue to consider when working with certain people. she mentioned that a traumatic life is definitely part of the aboriginal people’s background as they lost their freedom to live in their place and to freely move from place to place. so the context that i work in with aboriginal people is that there is intergenerational trauma from colonization especially in the residential school system and so there are high rates of family trauma involving children, and women in particular and so when i look at this, it reminds me that many of us would take for granted that we live in a place that’s free of these things but there are many people in canada and also internationally where these are enormous issues for them. (p. ) for some participants, the bodily integrity capability is a form of the principle of non- maleficence that everyone should be protected from unnecessary treatment. but many persons with disabilities, specifically people with mental health issues, may be less capable of making decisions for themselves such as avoiding unnecessary tests and treatments. in my environment, babies are provided with treatment that is necessary but one could actually say is violent in relation to ots’ practices. it involves painful procedures; it involves sticking tubes in various places; that’s not assault, it is part of care to save a baby’s life, so it’s provided in the greater good of the life support, nevertheless, all of that has, and there is a consent provided by the family to do that kind of medical intervention but the baby itself doesn’t have a sovereign right, in effect they’re spoken for by the parent and the family,…so they don’t really have a choice if the parent consents to treatment…(participant , p. ) participant referred to informed consent as a process to respect bodily boundaries and to ensure client safety. …this talks a lot about sort of bodily boundaries, and we often don’t know a person’s history or whether or not they’ve had abuse in the past or what not, and so i think that’s why it’s always really important for us to try carefully and always ask consent or permission to like enter someone’s house or being able to sort of touch someone or if we need to do some range movement exercise or what not, so trying to respect those boundaries, and if they say no, being able to respect that. (p. ) 	
   	
   question ii) how may bodily integrity capability be relevant to occupational therapy practice? the participants were asked how bodily integrity capability is relevant to your practice and to the profession as a whole? five themes emerged including: a client-centered approach; a social justice perspective; an advocacy perspective; providing (emotional) trauma-informed care; addressing mobility issues; and referring clients to resources. the following describes the quotes that support these themes. i) a client-centered approach some participants mentioned that ots respect the bodily integrity of clients. participant described it as relevant to occupational therapy practice consistent with a client-centered approach. i think that bodily integrity is extremely important and particularly in from our client- centered approach…(p. ) participant asserted that bodily integrity is important to occupational therapy practice not only as a part of occupational therapy evaluation and interventions of body functions, but as a process to establish what clients are able and want to do. we are concerned about the body, the bodily capacities…, i mean we take a one step further i would say, we’re looking at not just what the capacities are, but how those capacities are supporting or limiting a person’s ability to do the things they want to do or need to do. (p. ) ii) a social justice and an advocacy perspective some participants asserted that the bodily integrity capability is related to occupational therapy practice from a social justice and equality approach to health. so again from a social justice perspective, the language-ing is very pertinent when working with aboriginal communities. (participant , p. ) for some participants, social justice here means advocate equal opportunities for people with disabilities. for them, ots not only educate people to advocate for themselves in terms of empowerment, but ots do a lot of advocacy for their clients to retain or acquire jobs, or to improve relationships in their community. so i think that some of this [bodily integrity capability] is a little bit more in the advocacy area. (participant , p. ) 	
   	
   a few participants mentioned that there is a link between empowerment and advocacy. according to them, ots empower their clients to advocate for their rights including those related to bodily integrity. this one speaks to me as a bit of empowerment; so how are we working to advocate and empower our clients, to know that they have the right to be respected and to be treated regardless of their disability, to be treated like an active member of society, so that one i do, i like that one in my practice. (participant , p. ) participant provided an example of the canadian model of client-centered enablement [cmce] as a practical model for empowering people with disabilities to advocate for themselves. cmce has all those ten different blocks that we work with and i’m very, very, very much on the advocacy piece because i feel like sometimes people, when we’re working with people with mental illness or with some sort of cognitive deficit, it might not necessarily be the cognition that’s the barrier or it’s the confidence in the organization, so we’re just advocating for them to fulfill their dreams and setup some of their goals, so i think this piece really resonates with me so they know that to advocate…(p. ) to influence public policy and make request for change, participant noted that ots advocate for reasonable accommodation and accessibility for people with disabilities. advocacy in terms of accessibility, to a point, yes. and when i say to a point i don’t think mt everest should have an elevator put in, that’s obviously an extreme example, but do i feel that chemainus chief should have a paved path through the top at taxpayer’s expense so wheelchair people can go up? no, not necessarily. do i think that city hall, every office at city hall should be accessible to the people who need to go in whether in a wheelchair, crutches or walking? yes, so we do have a role for reasonable access…(p. ) iii) providing (emotional) trauma-informed care some participants stated that ots provide trauma-informed care to help people with mental health issues who have experienced violence and sexual assaults. [occupational therapists] provide trauma informed care for people feel disenfranchise, disempowered, and fearful of a system that have power to incarcerate them. (participant , p. ) participant also noted that ots can provide trauma-informed care to help traumatized people such as aboriginal children who have the experience of “intergenerational trauma from colonization”. 	
   	
   so the context that i work in with aboriginal people is that there is intergenerational trauma from colonization especially in the residential school system and so there are high rates of family trauma involving children, and women in particular…(p. ) participant asserted that ots provide trauma-informed care to help their clients rebuild a sense of personal safety through implementation of strategies to minimize emotional distress. … and we may be involved in mental health where practice, where people have experienced domestic violence, sexual abuse, child abuse, things like that, and so we would be in place to mitigate some of the negative aspects of that. (p. ) iv) addressing mobility issues almost all participants described bodily integrity capability in terms of the right to move freely from place to place. they agreed that ots address mobility issues that enable this right to be taken advantage of. …in terms of being able to move freely from place to place, i think that’s a definite one that ots work on. (participant , p. ) well, certainly with mobility, ots are involved with being able to provide information and equipment and resources for people to be able to move about as freely as they possibly can, if they got physical limitations. and with mental health, certainly if people have anxiety or problems socializing and they can’t move about freely because of that, ots might address that, by a group or by some of their treatments. (participant , p. ) a number of participants indicated that ots enhance the bodily integrity capability of their clients through increasing mobility and function, and enable their clients to interact with their environments and move freely by providing them the necessary tools and skills. well, i think we help these children through variety of different walking aids, wheelchairs, devices to be able to move freely from place to place. (participant , p. ) well certainly being able to move freely from one place to another, a big part of what i do is working with people who are not able to move themselves easily from one place to another. so either walking, limited walking or no walking. and what are the options, right? so a big part of what i do, i see is falling under bodily integrity. and then giving them the tools and the skills so that they, hopefully, can prevent or deal with situations that’s listed here “against assault” or whatever. (participant , pp. - ) participant cited that ots increase mobility by providing a way to move their babies to do various activities and interact with their families albeit they are living in critical conditions or chronic diseases, or they have parents with disabilities. the role of ot would be to provide a way to move the baby into different positions for different types of activities… it might be that you have a parent who has a physical 	
   	
   disability and the occupational therapist might be involved in making sure that the access to the baby is managed given the parents limitations. we’ve had parents who’ve had multiple sclerosis or who are paraplegic and ot’s have been involved in helping figure out how moms are going to manage that. (p. ) v) referring clients to resources some participants mentioned that ots provide supportive service to assist their clients and refer them to available resources if needed. [if someone being assaulted] and not having a way of being able to express that, right? so that’s not typically something that we actively pursue, but at the same time, because those resources are there, it’s certainly something that we can facilitate and let people know that they’re there, and where to go if they need that kind of support. and then also, having someone who’s able to communicate in any way is allowing them to be able to express what they’re thinking, what they’re feeling, what their concerns are. so yeah, definitely, in a lot of ways, i think the work that i do addresses that. (participant , p. ) i think being able to say for example refer on, to counselling services if needed, and connect people up with social workers or whatnot, and if we notice any risk of self abuse or neglect or what not being able to report those …i’ve seen quite a few clients in domestic violence situations and so being able to talk with them through it, … and being able to liaise with the family support practitioner and counseling services, and getting them connected there and to try to support them in the home and give them information about resources. (participant , p. ) participant indicated that those who are incapable of protecting themselves from abuse, and find themselves in situations of assault and violence, ots have to refer them to legal system or report abuse to the police. but for those who are capable, ots do have an educational role: we have adult guardianship regulations in this province that are similar across the country, so as an ot or as an employee in this organization, if i suspect that any of those things are happening, i have an obligation to report it and to come back and to work with the team to see if there’s anything we can do to lessen those risks, mostly that’s with adult’s who are incapable themselves of asking for help. for people who are capable or considered capable, then we may have an education role, but with adults who are incapable or maybe deemed incapable then, for sure we’ve got a role. (p. ) participant also mentioned that ots not only provide supportive services to reduce risks to clients, but consider they are part of the team responsible for assessing an individual’s capability. occupational therapists work in teams who assess capability and are involved in making decision about whether or not their clients are capable of deciding where to live or with whom. therefore, ots have a responsibility to detect or prevent abuse and violence by informing authorities or establishing a support system for their clients. 	
   	
   well right now, that’s really interesting because the, up until now there’s just been a few, like the doctor and a few other people in the legislation but they’ve changed the legislation around adult guardianship that there’s a number of individual professionals and ot’s are included in that, that could make a capability assessment…(p. ) . . sense, imagination, and thought capability this part describes the analysis of the semi-structured interviews with respect to the two questions regarding ots’ views about the senses, imagination, and thought capability with respect to their understandings and perceived relevance of this capability to their professional practice. question i) what are occupational therapists’ understandings of senses, imagination, and thought capability? in response to this question, the researcher’s analysis revealed one theme: expressing oneself in various ways. the following describes the quotes that support this theme. i) expressing yourself in different ways according to some participants, sense, imagination and thought capability means having the freedom to be able to express yourself in various ways. …so i just see it as a person’s ability to use their resources as well as they can in order to express themselves. (participant , p. ) participant noted that freedom of expression involving all types of expression, including freedom to determine one’s meaning of life: what it seems to me is that you should be able to see, think, imagine, create, independent, independently in a variety forms of expression. these may be as it says here religious, literary, musical, political or artistic, freedom of religion, being able to determine how your own life evolves and what the meaning of that life is. (p. ) or, as participant stated, a person’s ability to express his or her political thoughts: …it has to do with freedom to express yourself in different ways, to be educated, to be creative, to use your mind, to be able to express your political views. (p. ) participant described this capability as justice with respect to expressing one’s thoughts. in social justice circumstances, people have freedom of opinion, expression, religion, and political thought. i think this relates to issues around social justice, and …freedom of expression, to participate, and to express their thoughts and in some ways. (pp. - ) 	
   	
   question ii) how may senses, imagination, and thought capability be relevant to occupational therapy practice? three themes emerged related to the ots’ perspectives on the relevance of sense, imagination, and thought capability to occupational therapy practice. these were: self- expression; people with mental health issues; and children with disabilities. the following describes the quotes that support these themes. i) self-expression participant declared self- expression as a key component for occupational therapy practice to facilitate engagement in meaningful occupation. i think it’s [self-expression] a cornerstone for our practice, if we want to get people engaged, if we want to get people interested in participating…this is key. (p. ) almost all participants agreed that this capability is an essential part in occupational therapy practice, and it is important for all to be able to express themselves. i really like it first of all. i like the way that it’s framed and it’s an area of self- expression. it’s an area that ots have worked on also for quite a while. i used to do self- expressive groups with my client and i think, i agree that this is important, for a lot of people this is very important, being able to express themselves, and having the freedom to express themselves and this is relevant for ot. (participant , p. ) similar to the part of nussbaum’s definition of sense, imagination, and thought as “being able to have pleasurable experiences, and to avoid non-necessary pain.” some participants acknowledged that experiencing pleasure activities and avoiding pain is relevant to occupational therapy practice. they stated ots help people build their abilities to express themselves freely and explore what they want to do. well, again, it’s just allowing the individual to do the activities that they want to be able to do, and what’s important to them. so you’re looking at the ultimate meaning of life in one’s own way. you’re allowing them to share with you what is important to them and then you’re, with them, working towards helping them achieve those goals. but you’re doing it in a way that allows...if they do have limitations in those areas of sensory or cognitive mental capacity, you’re allowing them to be able to function at the level that they have. and you’re trying to help them make the most of it, right? (participant , p. ) participant mentioned that ots have an important role in enhancing the sense, imagination, and thought capability through learning processes and copying strategies, and resuming some of their previous activities where applicable. 	
   	
   i think that’s actually quite a huge area of ot in terms of, being able to use your own mind say for example and your own senses to be able to do something, so, we often see people where that’s impaired whether it’s like after a brain injury or after a stroke, so being able to help them to process and reason, problem solve and being able to sequence things and having greater insight into situations or whatnot, so i think that is a big role for ot. (p. ) a few participants indicated that ots support their clients in coping with new situations and their disabilities through engaging in self-expression activities. for example, participant noted that ots may help clients use artistic expression as an indirect means of communicating and expressing their imagination and thoughts. …being able to use the alternate meaning of life in one’s own ways, so helping people process through like, whether it is their sorting out, their learning how to deal with their new disability and so they use like an artistic expression of that to try cope with that or whatnot and using their own through imagination meaningful to them, or be able to say use their imagination to try give them hope in life and try resume some of those activities that they might have stopped doing after their disability, injury or whatnot. (p. ) participant asserted that ots not only assess limitations of the sense, imagination and thought capability through self-expression activities, but also evaluate their limitation of executive functions such as problem solving and planning, and decision making. we do a lot of cognitive assessment and intervention and external and internal compensatory mechanisms to help mediate any deficit, so i do think it is. …like assess for the limitation, like executive functions like problem solving and planning and pacing, and moderating themselves and being able to assess for that and speak to their abilities; what deficits they have because of their illness or what they’ve still have retained through their illness; like decision making is often a really tough one with our population. (p. ) participant noted that assistive technologies provide opportunities for promoting self- expression and enable clients to do what they choose to do. well again, that’s another area that i think i address a fair bit with the technology, because you’re really just giving them tools to allow them to develop their own unique expressions. but you’re figuring out “ok, for a lot of them, they may have sensory impairments, vision, hearing, cognitive impairments” so figuring out what are the best tools to allow them to do the things they want to do. so physically, they might not be able to...if art is something they want to be able to use to express themselves, they may not be able to physically do what everybody else does, but if you hook them up to a computer, and you have the right software, and you do the right access method, with the right level of instructional support, they’re able to produce incredible pieces and it’s their own self- expression. the technology is just facilitating that... (p. ) 	
   	
   participant also stated that this capability would apply to both clients and their families with respect to their expressing themselves in meaningful ways. …with respect to my area specifically, this would certainly apply to the families, the adult and the children of the families…well, there are aspects of how the family might want to relate to the child that would inform, that might involve using art, it might involve using music, it might involve using therapeutic massage, it might involve speaking freely to the medical staff, things like that, and the occupational therapist, i have been involved in situations where parents may have wanted to do particular artwork related to the baby, have their siblings involved in that, how would we display that art, things about that art that would be particularly meaningful for the child and particularly the family. if the family wants to read to children, it’ not going to over stimulate the baby, that kind of thing. so it’s a matter of allowing the family to express themselves freely within a context of what the infant can manage, and ot is definitely involved in that kind of thing. (p. ) participant highlighted ots have an ethical responsibility to avoid unnecessary pain in their clients, advocating pain relief to minimize their clients’ pain, acknowledge and mitigate the impact on their families, and to promote more pleasurable experiences. and the issue about avoiding unnecessary pain, one of the big things about my own job is reminding people not to do tests if they don’t need them because they’re painful, and then figuring out how to manage that, teaching the family how to help the baby manage that, teaching the staff how to manage it, so that’s what we do every day. and with respect to having pleasurable experiences, there are ots of things that you can do for a very sick baby that are pleasurable. there are also a lot of things you can do for a very sick baby which you would think would be pleasurable which are not because their brains are not ready, and so an ot would know, and be able to evaluate how a baby is responding to various things that the family might want to do and can help manage that interaction so that it actually ends up being pleasurable as opposed to being stressful. (p. ) participant also mentioned that ots advocate for their clients and their families by providing feedback to service providers and organizations involved with their clients’ care. ots may be an advocate for the family to speak to the medical staff about how the system works or doesn’t work and ot’s may be that person who the family connects with and talks to about that, and so the ot would facilitate, providing feedback to the larger system and so that would be a political way that ot’s could be involved, for sure. (p. ) ii) people with mental health issues some participants mentioned that sense, imagination, and thought capability is more related to the mental health practice area in occupational therapy and suggested that people with mental 	
   	
   illness lack or partially lack this capability. thus, improving this capability can be a focus of occupational therapy intervention. …in mental health, this is very much a big part of what we’re doing. (participant , p. ) i think this one that’s in my area with mental health, a lot of people struggle with their imagination and thought process, so this is definitely an area of intervention, is trying to see what someone’s thought patterns are and whether they have a sense of imagination and they have the insight to know if their senses are compromised… (participant , p. ) sense, imagination, and thought connection is often a key component of mental health issues. participant noted that people who live with mental health issues do not have opportunities to express themselves as others do. according to her, they often become ill early in their lives, so finishing school and education is often challenging for them. she asserted that ots help those individuals express themselves through restoring their lives and developing skills to experience worthwhile living. [occupational therapy practice] covers a whole lot of things. i think part of the role of an ot through a recovery framework is to help people often re-story their lives to help people to express that purposes and meaning as a result of living with mental health issues such that they’re able to see themselves outside the illness so it is helping people develop self-efficacy though activities such that they’re able to see a better future for themselves. so two things, restoring all life and also re-skilling people such that they are able to be more self-determined, more involved in their own care and more committed to their own recovery. really coming to that place that they perceive that life is worth living, because that is an act of choice for many people who live with mental health issues. (p. ) some participants noted that ots often improve the sense, imagination, and thought capability for people with mental health problems and cognitive dysfunction. occupational therapists are involved with cognitive retraining using relaxation training, helping clients decision making, learn compensatory strategies to cope with their new situations, and teaching them basic skills. ots work with the development, mentally delayed with cognitively impaired, with those with mental illness to help them use, to help them maximize their own ability to function in the area of thought, cognitive process, reasoning, planning. (participant , p. ) participant said that improving the sense, imagination, and thought capability is important for people who live in residential care: well, i’m thinking of particularly in mental health for example, for somebody who is very depressed, maybe tapping into music or drawing and drawing them out that way and allowing people to express that part of them and then i think is residential care where 	
   	
   people are usually quite disabled by that time and, that making sure they have an ability to experience and to express themselves even if they have limited cognitive capabilities, that they have those outlets. (p. ) iii) children with disabilities a number of participants asserted that having this capability is a basic skill for children when learning to express themselves. they mentioned that this capability is relevant to occupational therapy practice as it is critical for child development and learning. they also noted that ots consider this capability in their practices from educational and multisensory point of views. i think it is relevant. i think, you know, even for example, we’re trying to teach kids motor skills. and they need to be able to use all of their senses, their imagination their thinking process…you know, that sense of, just imagination and thinking and everything, i think it’s fundamental to development. yeah, so i think it actually has a strong sense in ot, in education and sort of the combination that i see with both, sort of health and education merging in the practice area that i’m working in. (participant , p. ) participant indicated that ots work closely with children with autism who lack this capability. she also mentioned that ots help such children promote this capability by helping them connect with the world in a range of ways. oh well the population of kids that i work with, do have disordered senses and they do have disordered thoughts which is part of their diagnosis, children with autism have processing issues related to how they make sense of the world, and what we see are kids who are very isolated and don’t make those human meaningful connections with family or friends, peers, and that’s the most important piece of my job, cause i don’t work with many children with physical disabilities, i work mostly with kids with autism, being able to improve how they make sense of the world and to be able to connect and communicate in meaningful ways, is what i do in a nutshell, that is my job, sort of in a very short way of saying it. (pp. - ) participant noted that ots enhance the sense, imagination, and thought capability with interventions to strengthen communication skills and promoting literacy as well. i think, one of the things around literacy is that i think we need to really think about, for me that comes around the way that we communicate both in writing and verbally with clients. i mean, in pediatrics, a lot of what i do is promoting literacy in children around visual motor, fine motor functioning, so there’s kind of a direct coloration, i guess, there (p. ) 	
   	
   . . emotions capability this part is intended to explain the ots’ views about the emotions capability with respect to their understandings and perceived relevance of this capability to their professional practice. question i) what are ots’ understandings of emotions capability? in response to this question, the researcher’s analysis revealed the main theme pertains of this research question was: basic needs and rights. the following describes the quotes that support this theme. i) basic needs and rights a number of participants state that emotions capability is a basic human right that is critical for well-being. it means the right to be loved and to belong. so for me that would be a basic. it comes across to me as a very basic human right. again, that all children and people have the right to have a sense of safety, love and belonging. (participant , p. ) so i guess this is about the right to love and be loved and i think it’s a very basic, basic need and basic right. (participant , p. ) some participants indicated that the emotions capability reflects baseline and fundamental needs connected this to other capabilities. i think it’s in a way it’s sort of like bodily health. like, you need the basics in order to be able to move on to other goals. (participant , p. ) well, i think it’s a basic human need. for a person to be able to express emotions and also to have their emotions acknowledged by other, right? (participant , p. ) i guess just that people have an innate right i guess, to be able to express the feelings that they have. (participant , p. ) question ii) how may the emotions capability be relevant to occupational therapy practice? six themes emerged across the ots’ perspectives on the relevance of the emotions capability to occupational therapy practice. these were: people with mental health issues; children with disabilities; all those seen by ots; finding support systems; helping people manage their emotions; and teaching anxiety management skills. the following describes the quotes that support these themes. 	
   	
   i) people with mental health issues some participants reported that the emotions capability is more relevant in the mental health area of occupational therapy, as many people with mental health issues are emotionally vulnerable. …sometimes people lose family as a result of their mental health issues and studies seem to change a little bit these days, but perhaps % of people may lose their families as a result of their mental health issues. so because of the illness, they remain isolated without contact and without the chance to experience those emotions… definitely, when people become ill, , , that emotional development is blighted. (participant , p. ) definitely, certainly in mental health. i think a lot of what the mental health part of ot is really looking at helping people deal with their emotions, effectively. so whether that’s, recognizing what their emotions are, and then being able to express them. (participant , p. ) … so, it’s something that i think is really important if you work in mental health (participant , p. ) a number of participants noted that ots help people with mental health issues to manage their emotional health and overcome their emotional problems, and help to improve individuals’ daily activities through enhancing the clients’ capabilities to overcome their emotional problems associated with the activities. right, in the emotional side of things, i think a lot of this is worked on in group work in mental health. in engaging people into activities with others who, perhaps, can support them, in educating the people who are in the individual’s life who is working with somebody in mental health. and i think it’s in teaching about how these kinds of emotional things. (participant , p. ) this is certainly relevant to occupational therapy in general and an example would be mental health, because you’re helping people manage their emotions and how that may or may not facilitate or not facilitate their goals and how they view life and things like that. (participant , p. ) ii) children with disabilities some participants reported that the emotions capability is particularly important in early childhood development and contributes to the development of a healthy personality. they noted it is a fundamental component of children’s well-being. i sort of saw this as like, looking at attachment and appropriate behavior and sensory processing, just having a good, solid, early childhood development. i think it is relevant 	
   	
   to ot. i think it’s in a way it’s sort of like bodily health. like, you need the basics in order to be able to move on to other goals. (participant , p. ) participant also mentioned that children with behavioral issues often have problems with emotional development. in these cases, ots focus their attention at basic emotional developmental to help minimize its impact and enable the child to develop healthier emotional strategies. …because when they don’t have the basics in that area, they don’t participate in things appropriately and so, they’re delayed in everything anyway. so, environmental modification, just around even positioning, or sensory distractions, or sensory strategies that will help them attend or focus. still putting things in place for gross motor and fine motor practice, because they have had so many things going on. they haven’t had a typical childhood to get out and explore and trying things. (p. ) some participants stated that ots work on emotions capability in early childhood development; such as attachment, appropriate behavior, and sensory processing. for example, participant mentioned that children with autism lack the capacity to develop meaningful relationships and attachments. according to her, ots facilitate the development of meaningful relationships by finding new ways of connecting with others, such as involving them in playful interactions. a lot of these kids are unable to really form meaningful attachments, they become much more interested in things like spinning objects or something non-human, but it’s not a particularly meaningful relationship or connection. a lot of it is facilitating a dynamic or a relationship with the child and being able to make that bridge with the child and the parent, so it’s helping that parent find a new way to connect by starting at a very, very basic level with being able to develop that flow to be available, to be there. (p. ) a few participants stated that everyone including children has the right to feel safe emotionally as well as physically, to feel loved and that they belong. for example, participant asserted that confidentiality issues related to care would be included in this capability. she mentioned that ots ensure the emotional safety of their clients during care. again, that all children and people have the right to have a sense of safety, love and belonging. and i think in occupational therapy, i think we do indirectly think about the, maybe the emotional safety. (p. ) participant noted that by considering the level of illness, ots facilitate appropriate interaction as necessary for infant’s emotional development while they are in acute care hospitals. another thing about that’s listed here is that supporting the “forms of human association that can be crucial for development”. one of the issues in the nursery is that parents are separated from the baby; i mean that’s just a fundamental problem. it’s not such a 	
   	
   problem in other countries but certainly in north america, it is a problem and the ot is definitely involved in providing parents ways of having, if they can’t be there all the time, when they are there having high quality interaction with the baby, knowing what that baby’s saying, what their movements mean, how much the baby can interact, what can they see, what can they hear, when is their seeing and hearing improved, all of those things that facilitate a relationship between the baby and the parents and that’s appropriate for their development and it changes over time depending on their development and their level of illness. (p. ) iii) all those seen by ots some participants suggested that the emotions capability is relevant across areas of occupational therapy practice as it impacts all areas of a client’s capacity for occupation. i think emotions is huge, because we often see people at their lowest, when their emotions are very vulnerable and there is a lot of grieving, whether it’s grieving from a loss of function, or loss of independence, or whatever it might be and so being able to sort of work around that and sort of work at the persons own pace is really important. so i think, emotion is quite important because your emotions impact everything. you can’t separate emotion from body. (participant . p. ) a number of participants stated that the emotions capability is relevant across occupational therapy settings from hospitals, institutional, schools, and private clinic settings. for example, a few participants who worked in the acute care hospital setting noted, yes, it’s relevant to my practice, in that my patients have undergone massive emotional trauma. on tuesday, they’re at work and they’re not feeling quite well so they go to the doctor to get a sick note, the doctor does a blood test, and two days later they’re facing life and death decisions about their leukaemia, so they’re emotionally very traumatized. (participant , p. ) in my practice, the whole experience is traumatic, just the nature of it is traumatic for families and for the baby. it is filled with fear and anxiety. it isn’t something that can be avoided because of the nature of the experience. this is the person’s offspring who could die at any minute. (participant , p. ) a few participants indicated that in different practice settings, ots acknowledged the effectiveness of culture when working with a range of clients from culturally diverse backgrounds. they explained the impact of cultural factors in development of emotions. for example, participant asserted that ots need to create an environment that is emotionally safe when working with ethnic minority population. i know that in my practice with aboriginal families, there are risks involved in accessing occupational therapy because of the historical relationship between indigenous people 	
   	
   and institutions including health care, and so, i’m very conscious of people’s emotional safety within our relationship and the need to give time to allow that to develop because unless somebody is feeling emotionally safe with you, then it’s very hard to go anywhere else with them in terms of therapeutic value. …in community context when you’re having potentially some long term relationships with people, gaining emotional safety on both sides is really important. (p. ) participant noted that the emotions capability is relevant to occupational therapy practice from both the client’s point of view and that of the clinician. she stated that the emotions capability impacts both clients and therapists. so emotions, regardless of where you’re working, you’re always working with people in a traumatic. the reason why you’re an ot is to work with people to get them back to finding meaning and purpose in their life; and when you lose that meaning and purpose and role, you’re going to be emotional about it. there’s going to be anxiety and grief; and even if you’re working with a child, it’s their parents, so you’ve got that secondary emotion that you need to be dealing with, and with mental health outpatients, it’s often the family. so, it’s emotions on all levels, and also for yourself, because i find that sometimes i often just wish i worked at a coffee shop and didn’t have to deal with anyone who’s going through anything traumatic because it really wears on you, as much as you don’t think it does, i think emotion is really relevant to ot, both for the clinician and the client. (p. ) occupational therapists need to be aware of his or her emotions and feeling to prevent them interrupt the therapy process, as participant noted, sometimes you have to get off the emotions to help the emotions heal. (p. ) iv) finding support systems some participants indicated that ots improve the emotions capability by identifying social, emotional, educational supports for clients, and help to incorporate family members and make use of the client’s support networks and develop new ones. thankfully, we’re doing a better job these days, where one of the roles that ots play are developing family education sessions with their loved ones and we have literature to say that that’s making a huge difference in recovery for people, so hopefully keeping families together, keeping support systems, as we know when people lose their family support, often homelessness is one of the first issues and homelessness becomes a cycle where people remain isolated without contact and without the chance to experience those emotions. ..so yes, for some it’s really, it’s really, once again trusting people, once again finding support systems, once again learning how to broaden their social support system, natural supports that people might have and ot’s very much do that. (participant , pp. - ) 	
   	
   yah, i think it make sense. it’s applicable. the idea of having attachments to things and people we know from research as well that people who have good family support, who have been adolescents, who have been able to develop strong attachments to one person that they feel they fit with, and can promote better outcomes, so the way services are organize also, we’re trying to sort of incorporate family members and support networks into the work that we do. (participant , pp. - ) participant noted that ots try to be aware of their clients’ situations to maximally augment this capability and avoid inadvertent decisions that impact the client negatively. what i would think that the role of the ot there would be to identify for sure what’s going wrong…could help that person grow and develop in a proper way. i wouldn’t as an ot want to do anything that would impair that ability. i would want to be very sensitive to it. for example, i’m suggesting some help that they would get from a loved one or a family member. ..they have a different relationship with that person, so i need at the very least to be aware of that and to look at consequences for involving and finding ways of checking in, because maybe my client doesn’t know how to express that to me and they see me, who knows, they see me coming in and telling them this is what they’re supposed to do and that’s not on. i mean i’ve had, so, i think, at the very least, do no harm with that, don’t make it worse, the next step up would be identifying what the issues are, finding some appropriate resources; the third would be ots who are trained to help people move through different emotional stages, and transitions. (p. ) v) helping people manage their emotions some participants asserted that ots help people manage their emotions through developing communication skills to allow their clients to express themselves including their emotions. i think it has to do with helping them through communication skills, expressing their, i think a lot of it has to do with communication skills and sometimes it has to do with communication skills and also, i guess, depending where problem solving, where it’s being and looking it how it’s affecting other parts of the person’s life. (p. ) a few participants stated that ots provide communication strategies to improve the emotions capability. for example, participant reported that ots develop healthy emotional expression in their clients consistent with their wishes, engaging them in activities, and educating them. she noted that communication devices allow clients to be able to make choices, communicate, and express their emotions. ot is really looking at helping people deal with their emotions, effectively. so whether that’s recognizing what their emotions are, and then being able to express them. and certainly from my point of view, more directly, for the people that have communication issues, providing them with strategies that will allow them to share...first of all, recognise those emotions, so some of the work we do is really talking about, helping them recognise when they’re angry, what their behaviours is like, and what do they do 	
   	
   when they’re angry or when they’re upset or whatever. and sometimes, they’re not making those connections, so helping them identify that, and then allowing them to be able to say about it. so when i’m having a page on their communication device that says “i am happy/sad/anxious/worried” and allowing them to be able to make those choices and to be able to say to somebody “you’re pissing me off, get out of my face!” where physically they may not be able to express those; they may be expressing them but other people aren’t recognising them. a lot of why we get people, a lot of reasons people come to us for communication devices is because there’s a behavioural issue. …so i think a lot of what we do, we’re trying to allow healthy emotional expression. right? in a way that is both respectful for the individual and for the people that are around them. (pp. - ) vi) teaching anxiety management skills participant noted that ots work with people experiencing emotional trauma, and help them reintegrate into their lives after a traumatic event. i think this one really ties into the psycho-social module that the psycho-social element that we deal with, obviously working in mental health right now. i can see very concrete evidence of someone’s emotional development hindering them to meet their full potential and the fear and anxiety and a lot of what we do is helping people reintegrate into their lives after a traumatic event, which is usually a psychotic break so, i really like this one a lot, and to me although it’s generalist, it really is concrete enough to tie into ot. (p. ) participant reported that ots along with the other professionals provide knowledge, and sympathy and support to help their clients and their families to manage their fears and anxiety. in my practice, the whole experience is traumatic, just the nature of it is traumatic for families and for the baby. it is filled with fear and anxiety. it isn’t something that can be avoided because of the nature of the experience. this is the person’s offspring who could die at any minute. it is filled with fear and anxiety, that being said, the occupational therapist is there to provide knowledge and compassion and support along with the rest of the team, about how that baby is doing or will do, and help the parents manage as best they can the fear and anxiety. we don’t try to have it go away. it’s not realistic not to have fear and anxiety so i guess one of the problems i had with this definition is sometimes overwhelming fear and anxiety is a normal response to a situation and it isn’t something that is a negative; it’s what you’d expect, so how do you then kind of manage it. (p. ) participant asserted that ots help clients to manage stress and anxiety with activities such as yoga, meditation, and breathing. i think that ots do work on anxiety and helping clients find ways in which they can cope and manage with stress, maybe through various activities, like yoga, meditation, breathing. (p. ) 	
   	
   according to participants , ots rebuild the emotions capability as a basic skill to overcome anxiety and fear through teaching clients about anxiety management skills and how to control their emotions when re-engaging in previous activities or engaging in new activities. …we didn’t encourage people to go get a job or to go get volunteer work and it caused stress vulnerability model, which is how we developed a lot of our service in the early days. thankfully, these days we look at things much more through a strength, strength based approach. …an occupational therapist, has developed a wonderful, ah and their team, a wonderful thing called “action over inertia” that teaches people about anxiety when they’re about to take new activities, and teaches people that, that is to be expected. so, i think that is one of the first places that we’ve seen a focus from occupational therapy on the emotional impact of reengaging in activities, in my opinion. so, it’s a very fairly systematic way to look at emotions as people look at activities. (p. ) . . practical reason capability this part describes the analysis of the semi-structured interviews with respect to the two questions: question i) what are ots’ understandings of practical reason capability? in response to this question, the researcher’s analysis revealed one theme: making personal decisions. the following describes the quotes that support this theme. i) making personal decisions some participants defined the practical reason capability to be the ability to make decisions and to make good choices. i guess my understanding is just sort of making good choices and using the idea of reflection to impact future choices that you’ll make. (participant , p. ) …so i guess it’s around choice and i guess it’s around being given enough, being given the information that you need to make good decisions that fit for you…(participant , p. ) a few participants described the practical reason capability as a kind of reasoning and autonomy to control one’s environment. i guess for practical reason in terms of planning one’s life, being able to have control over your own environment is huge i think and engaging in critical reflection so just the individual choice and autonomy is really big in that one. (participant , p. ) 	
   	
   question ii) how may the practical reason capability be relevant to ot practice? three themes emerged from the analysis of the ots’ perspectives on the relevance of the practical reason capability to occupational therapy practice. these were: a client-centered perspective; helping clients to make personal decisions; and providing educational and supportive strategies for caregivers. the following describes the quotes that support these themes. i) a client-centered perspective some participants asserted that because occupational therapy is a client-centered practice, the practical reason capability is highly applicable to occupational therapy practice. …as a concept, it’s something that maybe underlines client-centered care. that the individual themselves is able to have insight into them as a separate being and having meaning in their life by doing certain things. (participant , p. ) some participants reported that in client-centered practice, clients are considered as knowing what they want from therapy, and ots respect their clients’ values, beliefs, and reasoning related to this position. it is in terms of allowing people to live how they want to live, even if it goes against something you might personally believe in, or it might be going against something that you think is ok… (participant , p. ) … i think that ots are and should be interested in what peoples values are, i am definitely have always been interested in what people’s values are and i try not to impose my own values on somebody. (participant , p. ) participant noted that in client-centered practice, the goals of the clients and ots are aligned. and i think planning is an area that ots are also do help. …well i mean the therapist’s goals need to match the patient’s goals. you shouldn’t have different goals. your goals shouldn’t be that different from what the patient, … whatever, formulate your goals that support get helping the patient gets his goals… your goals may be a little bit different because your strategies or interventions maybe something specific but i mean, so it is relevant. (p. ) some participants stated that ots respect the client’s autonomy and their independency, and assist them with both what they want to do and are able to do. well to some extent, it’s a matter of engaging in critical reflection of planning one’s life. so having some autonomy and some recognition of them as an independent person with the unique set of circumstances and recognising that they have ideas around what they want to do and where they want to go, and what they want to be. and being able to, if 	
   	
   they so choose, having us assist them in reaching some of those goals… (participant , p. ) ot is highly involved in that. we have a client-centered practice and so our whole operation is about how that client is going to achieve the goals they want, have the spiritual development they want, engage with occupation that they want, and having a meaningful life and that’s kind of our bottom line. (participant , p. ) participant mentioned that in client-centered practice, the references of the client have priority in determining goals. she stated that ots provide clients with necessary information to enable them to make their decision and choices. well i mean that’s, well i’m reading it here “engage in critical reflection and planning of one’s life” and so i guess it’s around choice and i guess it’s around being given enough, being given the information that you need to make good decisions that fit for you, versus what may fit for me as a therapist… and i think that’s an important component of ot. (p. ) participant noted that in client-centered practice, ots are regarded as facilitators who only assist their clients to make decisions and give them opportunities to control their environment as much as possible to achieve their goals and independence. … i think often people don’t know where to go next, and even if they have an idea to, they’re so petrified of doing it, that the ot is a “facilitary” role. (p. ) participant reported that despite client-centered practice being valued as the preferred approach in occupational therapy, ambiguity remains regarding the extent to which the therapist’s power and assumptions guide client-centered process. well, certainly, i mean, the client-centered focus, the client-centered philosophy is aligned with that, but that philosophy comes with some assumptions around who decides, again, who in the end has that power to decide for that client and how much is the therapist guiding it. so, you know i’ m kind of, i wonder when it comes to client- centered practice, which is i think what this possibly could relate to in ot, is, again the preconceptions from the therapists about that process, and how that’s undertaken. it is about the assumptions and the ideas that the therapist has on what client-centered practice looks like. is that what it looks like from the perspective of the client, or is it from the perspective of the therapist? i don’t think sitting down doing a copm is a way of necessarily understanding a client’s life and of helping them to plan, but i think it’s very relevant, but i think we just need to be really critical about that, more so. (p. ) participant also mentioned that there are barriers affecting individuals’ ability to plan for themselves including social, political, and economic problems, and factors related to disability, gender, culture, and age. 	
   	
   again, if you’re living in chronic poverty or you’re living in vulnerable conditions, reflecting on planning one’s life, it gives a sense that you that you actually have the ability to plan your life and yet i think for some people, there are many forces and structures that impact their ability to plan their life that it’s not something that is just under one person, an individual’s control… that actually, can act as barriers to some people who are vulnerable, to be able to have a sense of autonomy in their life. (p. ) some participants stated that the practical reason capability is relevant to occupational therapy practice from an outpatient perspective. …but in general, when somebody’s more coming in from an outpatient point of view, yes i think it’s relevant. (participant , p. ) a few participants asserted that the ability to exercise autonomy and planning of one’s life depend on a person’s health condition. for example, participant noted that persons with physical disabilities are capable of making decisions about their lives. being able to form a conception of the good and to engage in critical reflection about the planning of one’s life. that to me is to be able to help self-direct and even if a person can’t enact everything they want about their life, at least they have a way of managing that. so for example, if you have a person who is very physically disabled but they have a clear idea of what they want to do, then they can be capable of making those choices about their life. (p. ) participant also reported that individuals who are living with a chronic long-term health issue, they have serious problems that affect their ability to plan for themselves. or, people with severe mental health issues, and cognitive impairments are less capable of reflecting on their lives and making effective decisions. wow, there’s a lot of people who don’t have this. [laughing] a lot of people aren’t planning one’s life. it’s something i might have to work on. so i just thought, yeah, that’s a nice thought, but i didn’t see it as being something that applies to everyone. i really don’t think that that’s something we could expect of everyone. and in particular, someone who has had a brain injury, or a mental health problem. you know any kind of difficult life transition or change, expecting this of everyone is... (p. ) ii) providing educational and supportive strategies a few participants noted that the practical reason capability is relevant to occupational therapy practice from an educational perspective. um, yeah, i suppose it’s relevant in thinking about it from an educational standpoint, so understanding this as a capability is something that would be important. (participant , p. ) 	
   	
   more i saw it as relevant to education and that part of my job…so more from an education point of view. (participant , p. ) participant asserted that ots need to be able offer options to the clients at their level of ability, and need to be aware of clients’ problems and have realistic expectations. about the planning; i think we need to be able offer options to clients so that they can see beyond make choices. it really depends on the person’s, what is it? ots of control, if they are really someone who has an internal sense of control, then we need to work with them and how they can enable it and what choices might be possible… we have to just offer options and choices and work with someone at that level. we can do that it very mundane ways. we do that in very mundane ways everyday just around practical things, just every day adl. (p. ) for example, participant mentioned that people with mental illnesses may be less able to make critical decisions and their capacity for practical reasoning may be deficit. nonetheless, they may be capable of making simple decisions in daily life. she noted that ots can work at a basic level to improve the practical reason capability of a client by providing opportunities and strategies. and then there’s also people that physically or cognitively can’t understand; then being able to understand, to help them figure out what is important, what isn’t. they’re not maybe able to make those big life decisions, but they’re able to make decisions around a very concrete activity. or being able to say “i like it this way, not this way.”... so i’m going to give them the opportunity to decide. we give them the strategies; the tools to use, their partner’s still aren’t giving them those choices. even though they’re capable of making them. i think you can, that’s very relevant in a lot of ways. (p. ) participant reported that ots enable their clients to develop the practical reason capability to identify barriers and to achieve what they want to do. i think ot could do a lot more with enabling people to reach their own goals by helping them figure out what those goals are and helping them shape it, and helping them, enabling, and finding out what the barriers are now…( p. ) participant asserted that ots provide educational and supportive strategies not only for their clients, but for their caregivers as well. well again i think that this would maybe be more appropriate to the mother, the parents, being able to have an understanding of how to make sense of their child’s diagnosis and then how they can engage in a new process through information and education from an ot and that way they’re able to promote more independence for their kid. (pp. - ) 	
   	
   participant mentioned that ots develop some strategies to better ensure the families have the opportunity to plan their care. …in my area of practice, i would say it’s about supporting the family and the baby to have the opportunity to plan their life and that maybe, the life might be five minutes, the life might be a month, the life might years. it’s still what it is for the time that it is and again what we would be involved in is how they engage with the baby, how that baby is brought into the family, who the family structure is and how the life that they have will be as good as quality as they can have it for the time that they do have it. (pp. - ) . . affiliation capability this part is aimed at describing the ots’ views about the affiliation capability with respect to the two questions: question i) what are ots’ understandings of affiliation capability? in response to this question, the researcher’s analysis revealed two overarching themes: basic needs and rights, and social relations. the following describes the quotes that support these themes. i) basic needs and rights one of the perspectives from which a number of participants described the affiliation capability was to see it as “basic needs and rights”. here, basic rights and needs means being treated with dignity, being considered equal to others, being able to have compassion for situations, having friendships, being able to meet freely and speak freely with respect to politics, and being able to work with people in a mutually respectful way. [it is] talking about self-worth and dignity to some extent that individuals of all different variations have the basic, same basic needs and rights. (participant , p. ) according to some participants, there were two types of comments about basic human rights and needs: those referring to basic rights, such as being treated with dignity, and those referring to basic needs, such as the sense of belonging. for example, participant described the affiliation capability as an important aspect of being treated with dignity. she explained it in terms of equality and rights. so, again, this is about being treated with dignity, being considered equal to others…we are very much involved in our clients and their relationships with other people and seeing them as having their own rights to engage the life they want to have and being treated with respect and with equality. that’s right, and we’re super involved politically with equal rights for those who are disabled…(p. ) 	
   	
   participant defined the affiliation capability as a sense of belonging in terms of being a basic need. again it goes back to that sense of belonging, possibly as a basic kind of human need. (p. ) ii) social relation the second perspective from which some participants described the affiliation capability was to see it as “social relation”. i mean this is key to living, i think and so being able to engage and being involved in, being in a social group really, and being able to live with others in a way that’s effective, that the people you are living with are benefiting and that you, yourself benefit as well, so it’s “you give and you get”. (participant , pp. - ) in other words, it means seeking out positive social support that is a key component of healthy living as described by participant : …that social relations are important for general health and function. (p. ) participant stated that the affiliation capability is critical for maintaining relationships and achieving their needs as human beings are social beings. ok, so the first one, affiliation, it’s really talking about being part of a social group. so i think the first part for me is looking at the importance of the social connectedness, within society as well as for individuals, and that feeling like that you’re a part of some sort of group, in which you’ve got a shared identity, or there’s something that you have in common with the people in that group, i think that’s a really important part. (p. ) participant also asserted that this capability it is about one’s social network and having relationships that are mutually respectful. i think having a social network is huge and the social interaction, being able to nourish friendships and what ots and where it’s an equal friendship and where one person doesn’t have power over the other one, but its having that social network and people who care for them or whatnot, i think is what the affiliation is talking about. (p. ) some participants mentioned that the affiliation capability is about belonging and how people belong. it was noted as being about seeking social support through healthy attachments and pursuing social support through others. ... so it’s about belonging, so that’s friendship, social interactions. it gives us some ideas i think about how we can be, how people belong, so belonging maybe in relation to having compassion for others or for a situation. (participant , p. ) 	
   	
   participant explained the affiliation capability from the empathy perspective. she mentioned that ots try to understand the clients’ situations and problems in order to better contribute to their well-being. this speaks to like, perspective taking; so can someone show concern for other human beings, can someone interact with others. this is like the empathy perspective taking part…i think is really big in people with both personality disorders and i mean this is why we are so good at our job, is we try so hard to have that empathy and imagine the situation of another, compassion for that situation. (p. ) question ii) how may affiliation capability be relevant to occupational therapy practice? the results describe the four themes that emerged from the analysis of the ots’ perspectives about the relevance of the affiliation capability to occupational therapy practice. these were: helping clients to identify their interests; developing friendships; social network and social skills; advocating for their clients; and working with clients with mental illness. the following describes the quotes that support these themes. i) helping clients to identify their interests some participants noted that the affiliation capability is relevant to occupational therapy from a client-centered perspective. they asserted again that occupational therapy is client- centered practice, so ots need to identify their clients’ values and interests, and respect what their clients want to do. and the intervention with those individuals who have some interest is really helping people to identify interest, to participate in experiences that may, that may nurture them, that may give them possibility for future, so ot’s are heavily involved in that… (participant , p. ) and they should be in the driver’s seat; not us. they determine what they’re ready for, what would be useful for them...(participant , p. ) participant noted that ots help people with what they want to do by identifying goals and the barriers. …i could do a whole lot of different things, depending on what this person wants to do; …as an ot, i’m trained to help identify what goals are, what are barriers, what are facilitators, and i don’t have to know a lot of content in area to start, i just need to get going on that. (pp. - ) 	
   	
   participant asserted that ots are responsible for reintegrating their clients back into society after an event or an illness. she stated that ots help their clients to identify their interests, and help them redefine what is his or her new role is after trauma or disability. i think with someone who’s living with a physical disability, you’re talking to say a father who has lost his ability to work maybe and provide for his family, helping him redefine what is his new role. he’s still a father, but he may be not the bread winner anymore, so then helping him sort through, you know, what is a father and how can he maintain that role even though maybe one of his primary jobs or duties was to make sure everyone, to make the money so that the family could live. (pp. - ) ii) developing friendships, social network, and social skills some participants noted that ots promote the affiliation capability through supporting the notion of social networks and friendships. they mentioned that social relationships and friendships have effects on both mental and physical health. so i thought that this affiliation is important and how it might relate to ot would be...really looking at how do we help people to think about their social relationships. how do they protect some of their social network and friendships; how do they expand it if it’s shrunk down to such a size that it’s just not working for them. that social relations are important for general health and function and so, looking at that, is something that i think is really important for occupational therapy. (participant , pp. - ) participant asserted that many people with disabilities lack the opportunity to interact with others to develop social relationships. yeah, so a lot of these kids have no friends, they don’t know how to socially interact. and it’s heartbreaking for a mom that their child never gets invited to a birthday party, you know, they’re not included in social gatherings, because they’re just difficult kids to take out. (p. ) participant noted that ots are responsible for promoting social support systems for their clients which include friendships and fostering social skills. and then, i guess, just even, for our students [clients] being able to live with others and manage well and have friendships and things, just that social interaction piece with children, which sometimes comes into our role, and i think some of our kids who really need a lot of practice with social interaction that are not developing naturally, they have referred to other ots for more private work for group type intervention where they might build skills as well as social skills. (p. ) participant reported that one occupational therapy intervention for fostering social skills and friendship is educating the client’s family members as well as the client. 	
   	
   so promoting friendship and affiliation among, among other families and among children is a big part of my job. i might ask them to bring one of the siblings into an appointment, and then i might help that sibling and the autistics child that i was working with, develop maybe a very simple skill, like, you know, maybe, being able to take turns…you would help that sibling and that child work on winning and losing, or waiting and turn-taking, how to co-operate with working on maybe building a puzzle together so we would facilitate that friendship through the activity, so the child with the, um, who had difficulties, you know, very impulsive, very easily anxious and frustrated, starts to develop the skills. (p. ) participant stated that ots promote the affiliation capability by providing support for caregivers, e.g., shared information and education. i think affiliation is a huge part… a lot of the families i saw, particularly, the poorly educated, to have a severely disabled child, to have a child with a mental health or cognitive challenges; they were so sheltered from the community. and there was a lot of blame of the mother,...and the mothers were very much isolated from the community and their families….i find that mothers and mothers with children with disabilities are an enormous support for each other…so it was promoting shared information, shared education for moms, yeah. (p. ) participant reported that ots facilitate the affiliation capability by providing assistive technology and giving devices to their clients to provide opportunity to do things they want to do. certainly with the work that i do, a big part of what we’re trying to do is allow or facilitate the skills and the tools to allow them to interact with others, as they wish. so whether it be providing a para-mobility device so they can get around and do the things they want to do, with the people they want to do it with or, from a communication point of view, giving them supports so that they are able to express what they’re needing and wanting and feeling or not, refusing to participate in and to be able to do it both, …as a therapist, i’ve facilitated an understanding of communication among those individuals. (p. ) participant also stressed that para-mobility devices empower the clients to do what everybody else does assistive technology gives them support to express their feelings, promote their mobility and the opportunity to communicate. para-mobility can provide opportunities for freedom and independence, provide opportunities for making independent decisions, and provide opportunities for inclusion and social relationships. para-mobility empowers individuals to be able to do what they want to do. she mentioned that ots also educate others to treat them with respect. 	
   	
   and hopefully, when you talk about the social basis for self-respect and not humiliation, so a lot of what we do is educating others around this individual as an individual is worth putting energy towards. so giving them the information and strategies to help them see this person in a very different way. to gain respect, or to have consideration and appreciate diversity– those kinds of things. (p. ) a few participant stated that ots help clients to learn skills to develop and maintain friendships through educational process for both client and their social networks. participant claimed that ots not only help their clients to develop relationship with others, but also help others to interact with them in appropriate ways. helping patients learn to live with others, show concern for other human beings, act in a way that is behaviourally appropriate, enables others to act in a way which is behaviourally appropriate to the patient…(p. ) participant also mentioned an example of how ots helped others to interact with a child who was severely burned and was having difficulty forming friendships. the other area where i know of ot’s getting specifically involved is, it was the ot’s and the social workers at the burn unit, have produced a video, for parents to take to a school so that a child who has been badly burnt, especially if they have facial scaring, they have a video to take to introduce a classroom, and the other students and the teachers and what to expect, to answer a lot of the questions so that the kids are not terrified when they see this johnny coming back looking like an alien and that makes a huge difference to a child being able to function in that environment and being able to maintain friendships. (p. ) according to some participants, developing the affiliation capability needs to be based on meaningful relationships and mutual respect. ot’s really try to help people develop meaningful relationships and mutual recognition, so, i would say that that’s a big area for ots. but, for recovery, within the recovery framework helping people find meaningful relationships and mutual recognition is part of the journey of recovery, people may end up being very isolated and not feel worthy sometimes of friendships. (participant , p. ) participant noted that ots help their clients to rebuild their social networks during recovery. she stated that ots try to provide opportunities to build social relationships and friendships in new ways. but people recover from mental illness. building that back up again, is where an ot might intervene. how do you go about doing that? how can you start to get new life? back on track; build up that social network again. maybe not, maybe in a different way, maybe in an altered way. but in a way that works. (p. ) 	
   	
   iii) advocating for their clients some participants asserted that improving affiliation as “having the social bases of self- respect and non-humiliation; being able to be treated as a dignified being whose worth is equal to that of others” is relevant to occupational therapy as advocacy role piece. to me this is the same as bodily integrity. this to me is that advocacy piece..; so knowing when someone needs to draw a boundary, what they’re entitled to as a human being and so to me. (participant , p. ) participant reported that ots advocate for their clients and refer them to available resources to make sure that their clients are not being discriminated against. i think just being cognisant of discrimination that might be happening and encouraging them to support services if needed if there’s discrimination that is happening or there’s some sort of power imbalance somewhere in their life, connecting it with social work, and other...i think probably more referral if needed, and sort of advocating on behalf of the client. (p. ) according to some participants, self-respect and non-humiliation are important issues in people with disabilities. one participant highlighted that many people with disabilities do not feel that they are treated equally. she asserted that ots can develop the affiliation capability by serving as advocates for their clients in various ways. some of it relates to advocacy like being part of organization and protecting organizations that support people’s ability to have freedom of assembly and political speech. …as an ot, trying to help people go back to school, go back to work or engage to activities and things they need to do and things issues like self respect, humiliation, stigma, you can’t really help them without addressing those issues as well. and we could address them in different ways. we can address them by doing advocacy with employers, advocacy with educational system. the ots can do that, or we can support broader movements that are like community awareness campaign, and things like that, we can support them. that’s really our role specifically...(participant , p. ) participant noted that ots are involved politically, for example to help ensure people with disabilities have equal rights. she mentioned that ots advocate for treatment for their clients, and help caregivers advocate for their children to access services. we are advocates and/or help the parents advocate for their own children with respect to receiving services that their children might need as a result of being born early or with a disability of some sort. (p. ) participant reported that some ots are involved in advocating at a societal level, and an institutional policy level to advocate for their clients in a respectful, inclusive way. 	
   	
   and i know of other therapists that do that on a more of societal level, more on an institutional level, where they’re going in and looking at policy changes. (p. ) iv) working with clients with mental illness the majority of participants agreed that the affiliation capability is relevant occupational therapy practice in mental health. this would be something you would see a lot more in mental health and there’s a lot of ot’s who work strongly in mental health… in mental health i think this is very, very strong. (participant , p. ) participant stated that ots who work people with mental health issues work to reintegrate their clients into society through the development of social skills. well, mental health is the easy one right, because often those individuals may have some difficulties interacting, so the ot, with some populations might be working really on helping people develop socials skills, so that they can interact in a reasonable way with individuals so that they’ll be accepted by the social group that they would like to be belong to. (p. ) participant noted that people with mental health lack of having the affiliation capability. … so ot’s are heavily involved in that and if i’m to bring into affiliation, part of that would be developing friendships, or going to social groups or just sometimes being around other people. sometimes it’s hard for people who live with significant mental health issues to tolerate being around other people, to be able to negotiate, conflict at work, and that may be immensely stressful for people. so it’s providing the right supports, possibilities for people within those environments and ot’s do a lot of that. to engage in various forms of social interaction, to be able to imagine the situation of another and to have compassion for that situation. (p. ) she also mentioned that ots provide services that help people engage in healthy social relationships and activities, e.g., embedded in self-respect and non-humiliation. so people who live with mental health issues are not only stigmatized within the community, but also stigmatized themselves. often people feel less than, feel ashamed an unable to connect with people in the community. so, ot’s try to help people to take next steps around that to have the right support and structures to help people to take the next steps. so, to help people develop meaningful relationships and mutual recognition, so, i would say that that’s a big area for ot’s…(participant , p. ) participant noted that although the affiliation capability is relevant to occupational therapy practice, its role in mental health services in particular, is not as visible as it might be. 	
   	
   this is one that i thought was most applicable to mental health and is one that i think is relevant to occupational therapy. one that we haven’t always perhaps discussed enough in education of ots. (pp. - ) . . other species capability this part describes the ots’ views on the other species capability with respect the following two questions: question i) what are ots’ understandings of the other species capability? in response to this question, the researcher’s analysis revealed one theme: the idea of environment. the following describes the quotes that support this theme. i) the idea of environment a number of participants noted that other species capability is about the relationship a person has with the living environment. my general understanding is that it seems like the idea of working in the environment, so to be relevant of your impact on another things, even if they’re not people. i think it’s very important. (participant , p. ) i think just the fact that we are part of a bigger world than just ourselves, where creation matters where plants and animals in the world, it is important, and we don’t just lure over these things we’re all sort of in it together. (participant , p. ) some stated that it is about sense of belonging and attachment to other creations. in other words, it is about your relationship with animals, plants, and nature. is that kind of affiliation with the world other than people? that’s my interpretation. (participant , p. ) well i guess it’s being able to appreciate that we’re not the only species on this earth, and that there are, being able to respect and maybe foster relationships with animals and plants and nature. (participant , p. ) participant mentioned that the concept of health is deeply affected by human-environment interactions in some client populations. i work with, aboriginal people, connectivity and relationships with animals, plants, the land, nature, is an important part of i think how health is perceived and experienced. (p. ) 	
   	
   question ii) how may other species capability be relevant to occupational therapy practice? five themes emerged from the analysis of the ots’ perspectives on the relevance of other species capability to occupational therapy practice. these were: relationship with animals and nature affects health; a client-centered perspective; a spirituality perspective; an environmental perspective; and not the main focus of occupational therapy practice. the following describes the quotes that support these themes. i) relationship with animals and nature affects health for some participants, other species capability is relevant to occupational therapy practice because human-animal interaction and relationship with nature affect health. i think it’s important because a lot of people talk about relationship with their animals, their relationship with nature as being important for their health and human being. (participant , p. ) according to some participants, there were two types of remarks about the impact of human- animal interactions on health: those referring to developing social skills, and those referring to animal-assisted therapy. some participants noted that pets, specifically dogs, can make the first connections that is needed for a therapeutic relationship. for example, participant said that a dog can help autistic children develop social skills and induce a sense of clam. well this big dog of mine is a therapy dog. so when the children come to see me, they come to see him. the children prefer animals to me sometimes, and the kids love my dog. they feel so safe and he usually lies down and they may lie down beside him, they may talk to him, they may read a book. (p. ) participant asserted that the effective relationship with pets depends on factors such as the cultural background of the family, the child’s characters, and the training of the dog. i have one family from korea, and they don’t like dogs. at all. in korea, and so the mum and the dad are like “oooh, get the dog away from me!” but the little girl is beginning now to...with the dog, and that’s very interesting for her parents to see, because that’s not what they grew up with in korea. it really depends on the family, because you have to take really good care of the dog, and so many parents are so overwhelmed with looking after their children. it depends; it really just depends on the child, and the family and the dog. you have to have a really well-trained dog, and not just any dog. (p. ) she also mentioned that for autistic children having pets such as dogs not only improves their social relationships, but can help keep them safe. 	
   	
   i have one kid that’s not safe in the house; he’s like a houdini, a magician. he’ll figure out how to undo all types of locks on doors, and he runs, but he can’t speak. he’s very unsafe, but that dog is always with him. so where he goes, the dog follows. like a guard, he keeps the child safe, so if they’re out on the streets or in town. the dog and the boy...but that dog’s job, with training, is to keep that child off the street; safe. (p. ) in addition, she mentioned the role of other animals such as horses in an individual’s health. she noted that horseback riding therapy can be considered as an intervention to develop relationships for children with autism, and to assist children with cerebral palsy as well. horses are very big; a lot of my kids do riding therapy. and the riding is not just getting on the horse and riding; it’s the grooming. yeah, yeah so the children will become part, they’ll go in, they’ll put the bridle on, they’ll do the brushing, they’ll clean the hooves, and then they’ll ride the horse, but eventually, and these kids with autism, a lot of them have posturing difficulties, and mild to moderate motor impairment, so riding on the horse is also a way to work on their trunk and stability and balance. and you know, holding the reins and being able to initiate the horse to move. um, and it’s also a social thing, because, you know, there’re other kids who’re on horses. and then they develop that rapport with their own horse over time, so the therapeutic riding is actually a big thing here. and, with the cp kids. and, with the cp kids, too. the riding is huge with our kids. (participant , p. ) participant referred to the importance of animal-assisted therapy for physical disabilities. yeah, so these are people who are in wheelchairs themselves and they use a dog to assist them. and the dogs are much more efficient than any of the tools that i would maybe provide for them. the dog is just that much smarter, and that much more intuitive. and so for that individual, it’s a really good match, right? (p. ) participant also mentioned the benefits of animal-assisted therapy for autistic children or people with visual impairments. i don’t generally work with animals, unless one of my clients, will have a dog due to a visual impairment, or i even have a student with autism who received a dog for safety in the community. it actually worked quite well, so far anyway. he actually has a visual impairment, as well as autism, but he was a bit of a bolter, so he would just run off and now that he has the dog, i think it’s given him sort of something to lead him, that isn’t an adult telling him what to do. so i think it actually worked out to be quite a nice relationship. (p. ) some participants mentioned that not only the relationship with animals, but one’s relationship with nature, affect physical and mental health. and i also think that for, especially with mental health, just the value of being in nature and connecting with nature. so being able to walk outside, you can use it from a physical 	
   	
   disability’s point of view – someone being able to walk over rough ground is a different skill than walking on a flat, indoor surface, right? (participant , p. ) participant noted that the relationship with plants may be important for a client’s health but it likely depends on a client’s age and interests. community gardening can be important for people’s well being...so i think it depends again like, your clientele. (p. ) she also addressed the impact of our connection with nature on our health. animals being very important to people and being in nature. taking walks in nature, various good ways to reduce people’s anxiety, calming, meditations and things like that. (participant , p. ) a few participants mentioned that although the relationship with nature is important to health, accessing nature for people with disabilities can be challenging. for example, participant mentioned the lack of community support and poverty as challenges for accessing natural environments. so, i guess i’m saying that people certainly have the capacity but maybe not the opportunity to function in that area because of life circumstances, because of poverty and not having a little green space which they can call their own, and if people are living in smaller communities, sometimes mental health supports are not as strong as they would be in the city. (participant , p. ) ii) a client-centered perspective some participants noted that peoples’ beliefs are related to their health and well-being. as client-centered practitioners, participant stated that ots are trained to identify their clients’ beliefs, values and interests and respect them in management planning. it’s totally driven by the client and then you say “ok, that matters to them. how do we help support that?” (p. ) some participants mentioned that the other species capability is more relevant to occupational therapy practice from an individual point of view. they asserted that if the relationship with the living environment is something important to the client, ots help the client to explore what they want to do, what activities are meaningful to them, and how to achieve these. if that is something that is meaningful to the client, i will be doing that to help the patient do what is meaningful to them. (participant , p. ) 	
   	
   so if somebody feels it’s really important to walk with nature, for whatever reasons they are experiencing some kind of a barrier and i think it is important for ot to kind of explore that with them. (participant , p. ) participant also affirmed that the other species capability has relevance to occupational therapy practice with respect to pet therapy and horticultural therapy, but improving this capability depends on the clients’ interests. …but i know of related to pets and pet therapy and horticultural therapy. if those are areas that an individual has identified as being something of interest for them, then maybe using those as a way to work with the individual on developing their interests or their skills. (p. ) some noted that improving the relationship with animals is only of value with someone who likes animals and is capable of caring for them. they reported that ots help clients to care for their pets if it is important to the client. sure, if that’s what the client wants to do. if they want to have a pet, yes…(participant , p. ) so again just helping people, i mean if they have pets, helping them care for their pets, if there’s been a change in their ability to do that, and looking at different options, or if they were interested in, or if they can’t have a pet because they’re living some place that they can’t have a pet, looking at what are some other solutions or options to do that. (participant , p. ) participant mentioned that there are two considerations regarding the relevance of the other species capability to occupational therapy practice. the first is to look at it from a client- centered perspective and what the clients want to do. the second is to look at it from animal- assisted therapy. there’s two ways of looking at that. one is if they are a person with a physical disability and they love their pet but they’re finding it difficult to care for the pet, then yes, i would definitely see that as a role for ot and the reason being that it’s really important to their client which i can understand because a lot of people are very very attached to their pets and they get emotional gratification from having a pet around, companionship, all of that, that stuff; so i would see that, if you’re talking about an animal that’s assisting a client, to me that’s quite different; a person has a physical disability either visual loss, or physical loss and they need help to do regular adl and managing in the community, and a pet is kind of like a, not a pet but a dog, an animal, is an intervention to help them do that. (p. ) 	
   	
   iii) a spirituality perspective for some participants, the other species capability can be defined beyond the physical relationship with animals and plants, and nature. they asserted that it can be explained from the spirituality perspective. according to them, ots are involved in enabling clients to live with other species to improve spirituality. i think for some is part of their spirituality, and spirituality is the center or our model. (participant , p. ) some participants noted that the other species capability is related to people’s spiritual beliefs. for example, participant asserted that aboriginal people connected it with spiritual beliefs, and the power they have in healing. according to her, this population believes in the substantial roles of animals and environment in healing. so, ots need to understand their clients’ beliefs and values and respect them. is it relevant to how i, only in, again, only in my understanding and appreciating the importance that that has for some of my clients, so connectivity to the land, and it also, for some of my clients it’s connected with spiritual beliefs around inanimate objects and the power they have in healing, so for me, it’s a matter of learning and respecting other peoples world views, how they see their beliefs… in terms of the environment that the persons and animals, people have used animals in therapy but i think it’s going beyond that, i don’t know. (p. ) iv) an environmental perspective some participants noted that the occupational therapy profession focuses on the idea of living and working within the environment. according to them, understanding the person-environment interaction is a fundamental premise in occupational therapy practice. my general understanding is that it seems like the idea of working in the environment, so to be relevant of your impact on another things. i think it’s very important. (participant , p. ) oh absolutely, i think you should be able to live happily with animals, plants and nature but what’s interesting about that, and ots in general have a very clear conception of what the environment is and it includes all of these aspects of the environment and we’re not just talking about the physical depths and things like that. (participant , pp. - ) participant asserted the benefits of including aspects of the environment for improving human health, for example, including living environment in a nursery unit. so my personal view is the babies would be healthier if they had plants and little animals crawling around and so maybe someday that will happen. but i would be an advocate for 	
   	
   the benefits of those aspects of the environment for the health of the neonate and for the family and it may be that there is a compromise that is made that the waiting area where the families wait would have some aspects of this which were allowed. i want the babies to have plants in their room. i really do, i think it would be fantastic, so we’ll see what happens. (p. ) v) not the main focus of occupational therapy practice for some participants, the other species capability is not consistent with mainstream occupational therapy practice. …it’s an important component of, it might not be the main thing we do, with as ots. (participant , p. ) some participants noted that ots are too busy to include this capability in their practices. …it’s not ot and we’re so busy trying to redefine who we are that if we start bringing things in like helping people interact with other species and helping them end life with normal length i think it doesn’t do our profession justice. (participant , p. ) on the other hand, others noted that ots do not pay sufficient attention to other species; perhaps, because we believe that human beings are more important than other species. i think it’s not such a huge of a role because i think that there’s still a mindset that just generally in society that humans are important and plants and animals and things are not, and so i think that hasn’t been an area historically that ot has been in it. (participant , p. ) some participants mentioned a number of barriers for including the other species capability in occupational therapy practice. for example, participant said that although there are advantages for some clients having animals such the opportunity to communicate with others and love another being, there are challenges such as cost, housing structure, and nature of a person’s illness. we’ve talked about that saying that because of poverty or because of housing structures within the large cities that for people to be around animals, to care and love for animals is prohibited because the landlords, but also the cost involved. (p. ) some reported that sometimes the structure-nature of an illness does not allow people to develop their other species capability. for example, participant mentioned that the clients who have unstable conditions have difficulty keeping animals. when as they were becoming a bit unstable, then they did not know what to do with the pet... (p. ) 	
   	
   . . play capability this part describes the ots’ views on the play capability with respect to theses questions: question i) what are ots’ understandings of play capability? in response to this question, the researcher’s analysis revealed three themes: human happiness; quality of life; and work/life balance. the following describes the quotes that support these themes. i) contributes to human happiness one of the perspectives from which participants described the play capability was to see it as recreational activities. this perspective appeared often in interviewees’ statements. …i think it’s important to look at play in terms of recreational activities. (participant , p. ) so this is the ability to enjoy recreation. (participant , p. ) a few participants reported that recreational activities and happiness are closely intertwined. happiness means different things to different people. for them, happiness means the ability to pursue “your joy”. depending on what’s important to you and what gives you joy and they can be recreational activities, they can be at home or out in the community. it could be things you do alone or it could be things that you do with other people in a social settings. (participant , p. ) ii) preserves quality of life some participants noted that improving quality of life means helping the client to identify activities that are meaningful and recreational. …promoting sort of quality of life connected to play…helping people clarify their values and their interests and their goals and then helping them to achieve what they want to do and what they feel they need to do. (participant , p. ) participant asserted that recreational activities can be considered meaningful if they enhance the individual’s quality of life. she noted that the ability to engage in recreational activities support the individual’s quality of life and its well-being. being able to engage in leisure activities and recreational activities is huge, in maintaining a sense of self and of quality of life, and so i think that is something that is quite important. (p. ) 	
   	
   iii) achieves a work/life balance according to some participants, we play various roles in our lives and achieving a balance among our roles is difficult. there is often imbalance. one thing we don’t spend enough time on i think that’s related to all of these things is the balance. so say for example: personal care, like daily routine of personal care is something that needs to be done. i could do it myself with a lot of time and energy and equipment, but i’m exhausted by the end of it and then i have no time or energy left to do other things in this area. (participant , p. ) for participant , the play capability helps establish work/life balance. …if you don’t have play, so to speak, in your life, then i think there is a huge part of life that is missing. (p. ) participant noted that achieving work/life balance and bringing joy into your life, improves happiness and life satisfaction. so i think, i mean not just focusing on self-care and productivity but make sure that you have a balance in your life and that you’re doing things that you enjoy, that you’re having fun, that might make you laugh, and that you get other good feelings of feeling able or feeling capable. (p. ) participant mentioned that the play capability not only can bring joy and balance in life, but can reduce stress and pressure. so, she stated, it can be described from therapeutic perspective as well. it’s a very important part of life. and i think looking at balance, from a therapy point of view, to be able to say ok. for individuals who may identify that as a problem that they don’t have enough of that in their life, or that they don’t have the skills or the abilities to develop the areas that they want; to be able to say “ok, alright, you can’t walk now, but you can still go sailing, or go hiking, or there’s other ways of doing that.” and then with kids, just play-based therapy, right? (p. ) question ii) how may the play capability be relevant to occupational therapy practice? three themes emerged from the analysis of the ots’ views about the relevance of the play capability to occupational therapy practice. these were: pediatric practice; working with people with mental health issues; and its important for everyone. the following describes the quotes that support these themes. i) serving as a primary therapeutic approach in pediatric practice many participants asserted that play is key for children development and participation. they emphasized the importance of play-based therapy in pediatric occupational therapy. 	
   	
   oh, that’s one for kids, that’s a key. with kids, just play-based therapy, right? (participant , p. ). occupational therapy is a play-based functional model. everything, i mean. people who don’t know what i do just think “oh well, you know, she just plays with kids all day!” and i do play with kids all day and it’s the vehicle through which we help develop the new skills, right? (participant , p. ) i think it’s often emphasized in the pediatrics practice where play is so important as part of the life development stages. (participant , p. ). a number of participants reported that interactions with children are largely through play. for children, as they mentioned, play is a way they learn about themselves and their world. play: big, very big. children have to play, we play through learning. so absolutely, probably up there with bodily integrity, bodily health, senses imagination. i mean, play is how children interact, it’s how they learn. (participant , p. ) oh i think ots have a huge focus. i mean pediatric for sure, i mean it’s probably one of their major focuses, making sure children can engage in play and do engage in play because they learn so much. (participant , p. ) participant asserted that play is a way to connect body and mind, and it is necessary for childhood development and growth. from her perspective, it is also seen as a way to enable therapists to build therapeutic relationships. play, i think it’s so important…i just think play is so key to the development of gross motor skills, fine motor skills, visual motor skills, social development, everything. imagination, desire to learn, and everything. i think it’s…and i think, really, that’s why i enjoyed working with children so much. it’s because all of our interventions, usually, as much as we can anyway, are play dates. and if the child is not enjoying it, then we are missing out on something. (p. ) some mentioned the play capability also can be considered as a way of enabling parents to connect with their children. participant noted that in children with severe disabilities, such as autistic children, the play capability can be considered as the primary level of connection that affects the relationship between parents and child. well a lot of my work is helping a parent understand why their child does what they do, so it’s being able to…for example a child that just flips, can’t sustain any kind of eye contact…so these children are non verbal, they have no language skills, they have no eye contact, they’re completely self absorbed, completely withdrawn, unable to really show any kind of interest in a parent figure, for example, and so then we have this play based activity where the mother is taking the child’s lead and following the lead in something that they may be interested in, the practical application is that she’s beginning to have a 	
   	
   different way of understanding how her child is being in the world and she can start to take some steps to understand that differently, and know how to engage with her child to have maybe for the first time in her life, some sort of nurturing mother role, …(participant , p. ) some participants reported that ots provide a range of activities to engage clients of all ages and abilities. participant noted that ots modify activities in various ways to be appropriate and accessible for their clients by breaking down activities, adapting the environment, and using the simple and clear instructions. a lot of my kids don’t know how to play. you know, if you’ve got a kid who’s got a severe motor impairment, he doesn’t know how to interact with objects or people, because of his physical challenges, right? so, it’s about adapting play. to being able to produce that higher level of learning, and with my children with autism, they don’t have a meaningful relationship to objects. they don’t know how, it doesn’t mean anything to them. so it’s being able to develop those concepts, through umm, i use movement a lot because those kids really like to move, so i use swings, and different types of suspended pieces of equipment, because they like to move, and then we would start to add onto that with something simple like throwing a beanbag and knocking over a tower, while they’re moving. and um, starting to develop some meaningful relationship to play. (p. ) participant indicated that play not only affects children’ developmental growth and improves social skills, but it was thought to contribute to family happiness. play, pretty obvious, i’m a pediatric person, being able to laugh and play and have lots of fun, i think is super important for families. and for the neonates, we don’t have play until they’re a little older, but if they happen to stay in the nursery, we provide access to toys, we educate parents about what toys would be appropriate to promote development, that kind of thing…(p. ) ii) serving as a therapeutic approach when working with persons with mental health some participants mentioned that the play capability in terms of recreational and meaningful activities is important for improving mental health. participant stated that the play capability can support individual’s well-being. again, i think it’s very important. and so, it’s part of what i think in mental health, we try to integrate into some of our treatments by making some of the learning part of what we did fun. like i can remember in our group about stress management, we always connected it to an activity, a game or something we could play. to help people remember the actual activity and the learning of what we were doing. so an example might be, when we talked about stress and having all these balls to juggle of family, home, finances, all the things that can be very stressful. we did this juggling activity and it was interesting because people remembered the learning of that group, based on the juggling, based on the play. so it was very interesting. so it is relevant, i would think. (p. ) 	
   	
   participant noted that improving the play capability is an important part of mental health occupational therapy practice. in mental health, in extended cares, in other places, it is done a lot more, but it is supposed to be a very significant part of ot. it’s a very significant part of life. (p. ) participant also asserted that recreation or leisure activities are important in mental health practice for establishing effective therapeutic relationships between the clients and the therapists, and other effects. i think this one is definitely important for occupational therapy, mostly for building a therapeutic relationship. i don’t actually enjoy the recreation or leisure component of my work, but obviously working in mental health is very important as well as other, it expands other areas as well. i just think that’s a way you get in with a client, you go through the route of what’s meaningful to you, what do you enjoy and then you can actually work, and it’s different because other professions want to be seen as very goal focused and they talk about medications and they’re talking about housing, and we’re talking about what’s important to you, so we cannot avoid the recreational activities, but i look at it like in the cmop. obviously leisure is there, i don’t like leisure but i use it as a means to an end. (pp. - ) iii) its important for everyone the majority of participants stated that the play capability is not only important for pediatric and mental health occupational therapy practices, but it is important across occupational therapy settings and clients. …i think it’s important for everyone to be able to laugh, enjoy life and to do something that is joyful just for the sake of doing, not because it’s expected, or they have to do this before they can do that. (participant , p. ) some participants asserted ots familiar with the play capability and they use it in a range of practice settings. … ot always, i think, been very much interested in trying to understand people’s interest and try to facilitate, their ability to engage in the things they want to do in recreation, in pleasure, and in enjoyment, things like that. so that’s one that i think that we’re pretty familiar with it. (participant , p. ) …[play capability] is about social connection, it’s about engagement, it’s about helping somebody to develop their own identity again, and these are all areas ots are involved in. so, recreation, participating in recreational activities is definitely a focus for ot and the notion of enjoyment and developing awareness and language around enjoyment i think. (participant , p. ) 	
   	
   participant mentioned that play is not only a focus of pediatric occupational therapy, but it is important for older adults to augment happiness. according to her, ots can adapt activities for people with cognitive and physical disabilities to promote fun. oh i think ots have a huge focus. i mean pediatric for sure, i mean it’s probably one of their major focuses, making sure children can engage in play and do engage in play because they learn so much, and then i think for the older adult, again, what kinds of activities or leisure activities are of interest to you and that you can participate in and that you feel good about it and then in what role. …so again, i think we have a huge role to play. we can talk about physical capability and cognitive capability and kind of match that with interests and help people kind of explore and come up with their ideas of how they’re going to have fun and what are they going to do with the rest of their life, kind of thing. (p. ) some participants mentioned that ots have a role in enhancing the play capability. they stated that ots need to consider play across ages as it has a important role in promoting health. it’s a really interesting one, to have it in this list, in terms of looking at this list as basic human rights, the right to play, the right to laugh, the right to enjoy recreational activities for all ages, not just for children, i think it’s a really interesting concept, and i definitely think it’s something that we need to look at beyond pediatric populations, especially that we’re going to have more aging people who are maybe not working full time or not working, the role of recreation in promoting health. i think ot’s have a big role to play in that, so i think play across the ages is a really important concept. (participant , p. ) and i think it is also very important through all aspects of occupational therapy, even with the adult population, i think the whole idea of play or leisure kind of gets missed sometimes because we are so focused on work and activities of daily living … self care, and all those things that are important, but if you don’t have play, so to speak, in your life, then i think there is a huge part of life that is missing. (participant , p. ) participant noted that play activities can be used in various occupational therapy settings including acute care. we’re one of the few areas of the hospital that still does a lot of leisurely activities in acute care, but then our patients can be in there for months but in most ot areas of acute care unfortunately this has been lost because it comes well after survival and all that, most ot’s are allowed to do now is survival. the patient has had their surgery, now get them out. now, you worried about is that they can get home, get on the toilet, get them food, in and out of bed and not fall over or hurt themselves or starve, so leisure, someone else has to deal with. (p. ) a few participants asserted that despite advantages of developing the play capability in occupational therapy practice, it may be precluded in some settings. for example, participant 	
   	
   cited that a therapist-consumer relationship makes consumer expectations high, so it may be difficult for clients to take play seriously. i think we don’t pay enough attention to play, to be perfectly honest. and i thought this were a long, long time and i think in that interaction with people often we are a little bit restricted by, historically by our relationships. being in a therapist-consumer relationship, i see that changing with the recovery model that we can become more authentic with people and have an opportunity to but i think that is a very powerful therapeutic tool that we don’t maybe pay enough attention to. (p. ) participant also mentioned workload issues may contribute to ots paying less attention to the play capability. in adults, we often don’t have time for it, just that things are so busy and there are so many people to see. (p. ) some noted that it is important to have some guidelines to include the play capability in occupational therapy practice. so this is a good thought that play should be part of what we do. how do people then put that into their practice? it either doesn’t happen. they say “we don’t have time; it’s nice in theory, but we don’t have time.” so it’s getting beyond some of these roadblocks that tend to put into practice. (participant , p. ) . . control over one’s environment capability this part describes the analysis of the semi-structured interviews with respect to the two questions: question i) what are ots’ understandings of control over one’s environment capability? in response to this question, the researcher’s analysis revealed three themes: decision- making; a basic human right; and political opinions. the following describes the quotes that support these themes. i) decision-making one of the perspectives from which a number of participants described the control over one’s environment capability was the capacity for decision making. being able to recognize that the individual does, is empowered to make decisions over things and decide politically or decide about sort of their material environment, just being able to have the ability to make decisions for themselves, and not have someone make those decisions for them. (participant , p. ) 	
   	
   i would say that the idea that people are able to participate in their decisions making, in their treatment decision making…(participant , p. ) some participants mentioned that some people do not have control over their environments and are unable to make decisions. my sense is that many people living in mental health issues feel that they don’t have a lot of control over their environments…(participant , p. ) …sometimes when people becomes patients, family makes the decision, people in authority make decisions for them. they start to lose the power in making decisions…(participant , p. ) ii) a basic human right for some participants, the control over one’s environment capability is about human rights. here, basic human rights include both citizenship rights and basic needs. it means as citizens, everyone has a right to exercise control over his/her environment and meet his/her basic needs. this perspective appeared often in interviewees’ statements. there were two types of statements about basic human rights: those referring to basic rights, and those referring to basic needs. …this reminded me the concept of citizenship. so “being able to participate effectively in political choices”- i mean, again, there are good human rights. (participant , p. ) so this is being about being able to own property and participate in political events, having the right to seek employment on an equal basis so it means that you wouldn’t be discriminated against, so again i think it’s largely human rights. (participant , p. ) it’s the idea that you feel like you have that as part of your human right (participant , p. ) some participants mentioned that it is necessary to ensure that people of vulnerable populations can access to resources to address their basic needs. but i’m not expecting my clients to do that when they’re in a vulnerable position, when they’re in a vulnerable position they have to get their immediate needs met. (participant , p. ) so part of it, was making sure the individuals had the needed supplies and resources, food, shelter, meaningful occupation, that kind of thing… a lot of these individuals need diapers, they need feeding tubes, they need feeding supplies...very basic needs! (participant , p. ) 	
   	
   iii) political thought some participants mentioned that the control over one’s environment capability is about political thought and political choices. so, and it has more of a political connotation to it. (participant , p. ) so, being political or having influence politically around the policies and procedures that support participation. (participant , p. ) some participants indicated that the control over one’s environment capability implies the right to privacy and freedom of expression consistent with political thought about being able to govern, contribute, and participate in your environment. so, all of us need to be able to feel like we can speak up and impact political choices. (participant , p. ) so again, you should be able to choose who’s governing you and be able to have free speech and participate in politics if you so choose and that you should also be able to hold property…that’s important. (participant , p. ) participant noted that political choices and costs affect the delivery of health care and the delivery of education as well. …identify more with the political side of things i think in this capability, just because i think that you do need to feel like you have some sense of participation and choice in political outcomes and if you don’t agree with things that you are able to speak up without feeling like that it’s going to be detrimental to you and i think that political choices impact the delivery of health care and the delivery of education and both of those areas are so significant in my area of work. (p. ) some participants noted that control over one’s environment capability is about political thought, but ots do not tend to work from this perspective. they mentioned that ots are not usually politically active in relation to their professional responsibilities. that is, ots should stay out of politics, professionally. (participant , p. ) the political one, i really thought, was not very relevant to ot.... so, which again, i think is very theoretical, and it isn’t very practical. (participant , p. ) question ii) how may control over one’s environment capability be relevant to contemporary practices of occupational therapy? three themes emerged from the analysis of the ots’ perspectives on the relevance of the control over one’s environment capability to occupational therapy practice. these were: 	
   	
   developing decision-making; helping clients gain and retain employment; and advocating for their clients. the following describes the quotes that support these themes. i) developing decision-making some participants claimed that ots have a major role in enabling clients to exercise control over their environments and empower individuals in order to independently participate in their society and make their own decisions. participant noted that one of the ots interventions for the control over one’s environment capability is to empower people with disabilities in decision-making process. … and i think that i guess in my practice that was one of the things to try to ensure that people becoming empowered in the decision making process of their lives. (participant , p. ) i think it comes up primarily when, when it comes to competency assessments, and is the person able to make those decisions and have control over their environment, when often they may not be due to cognitive impairment, or dementia or whatever it might be, so i think that’s where often ot does come in. (participant , p. ) participant stated that occupational therapy interventions include developing awareness, self- determination, and decision-making to help clients exercise control over their environments. my sense is that many people living in mental health issues feel that they don’t have a lot of control over their environments, and ot’s often help people articulate what are they unhappy about, or what are they happy about within their current situation, developing an awareness and then developing the self-determination to effect change if needed. so it goes from developing an awareness to a place of shared decision-making, to a place of self-determination…(p. ) ii) help clients gain and retain employment some participants noted that people with disabilities do not have equal opportunities to seek employment. they claimed that ots play important roles in helping their clients seek employment. that’s a huge piece. we work, we help people return to work or to find productive activities, be it paid or unpaid, i guess this is kind of looking more probably at a paid, on a paid basis but, i think ots work in that area for sure…(participant , pp. - ) participant also said that there is a shortage of employment opportunities for people with mental illnesses, and a shortage of ots involved in this area. 	
   	
   only approximately % of people who live in significant mental health issues actually work at this point, part-time for the most part. we know we can improve that to , even % with the right interventions, and ots are involved in that. (p. ) some participants also indicated that equal access to employment opportunities is important, people are not equal as they have varying abilities. so, it is important to be realistic about disability issues. employment on an equal basis with others is a contradiction in terms. a person, who is disabled needs or has a right to work but they need to be realistic in doing work that their disability doesn’t affect. a person in a wheelchair does not have a right to be a fireman because a fireman has certain physical capabilities that they need to carry out. access to work, ot’s get involved in vocational rehab, in helping a person figure out what they can do and helping prove to employers they are able to do these things, and they also get involved when they know what the job needs in helping a disabled person get to that physical or mental ability but that’s not about equal rights, that’s about maximizing the persons function. (participant , p. ) yeah, i thought that was important and i thought, certainly, but we’re not all equal, we’re different and so people should be able to seek employment on wherever they want to. but it doesn’t mean they necessarily should gain employment in every...(participant , p. ) iii) advocating for their clients the majority of participants stated that ots have a role in promoting their clients’ capabilities to exercise control over their environments by advocating for them. they asserted that ots advocate for the basic needs of their clients, and their access to the services and resources. this one also speaks advocacy for me…(participant , p. ) i think obviously that’s a big role that ots could play a role in promoting, but also in informing, in terms of advocacy…(participant , p. ) …that i think it’s a big thing for children and for adults and for ot in general that we need to be able to, if you feel like you ‘re going to be persecuted for speaking up and for fighting for something, or if you see that there’s something in health care which isn’t funded right now, then we should be able to advocate for that. (participant , p. ) participant described that ots advocate for their clients in two ways: first, by building their skills and by empowering them to advocate for themselves: i think a big part of that was political and recognizing and a big part of it is the people themselves organizing and being able to speak up for themselves around “this isn’t 	
   	
   acceptable, right? … that for me, it’s a matter of supporting the individuals to allow them, if that’s their interest to be able to do that. and i have a couple of individuals that i support that have been part of government committees that are listening to them around how should we change things. so i had a very small role and i was able to set up the computer so that they could use the computer independently. and now they’re using the computer for written output so that they can participate in these committees and schedule. so, it’s a small little part, but i’m facilitating their capability to be political. (p. ) second, as she mentioned, ots advocate for their clients by accessing resources and identifying financial and other resources for them. and then also, around the material, i think a big part of, now, i think a lot of the individuals i work with are supported through the clbc (community living bc program, which has so many issues) and a big part of that is that they just don’t have the funding required to support these individuals and the lifestyles that they have been saying that they will support them in. so, my job is to advocate for my clients and to say “listen, the equipment they need, the supplies they need, the kind of housing situation they’re in...so you know, from a material point of view, sometimes it’s like jumping up and down and saying this is not ok! we need to keep working on a solution that’s going to be better. and i can do it individually for my client or i could as an individual be involved in voting for the government, or raising those issues around – this is appalling! the decisions you’re making around these major life issues for these individuals where they already have way too much on their plate already. so i definitely think that’s very applicable. (participant , p. ) participant noted that ots have a major role to assist clients advocate for access to ot services, funding, and other resources. i guess it’s more with the kids that i work with. there is sometimes funding through our general medicals unicare, but there is a lot of things that aren’t funded, and so we are looking at the advocacy side of things and putting in justifications for a piece of equipment that may not fit the typical description or maybe it needs to be customized or, i mean, even in there lies more of, like, medicines or other just funding, i guess. it’s more of an issue, and the funding of programs and things too. so, all of us need to be able to feel like we can speak up and impact political choices. (p. ) participant mentioned that ots support families to advocate for their children’s needs. occupational therapists might provide guidance to the families to be politically active. politically, i think we can support clients to pursue political avenues if that’s going to help them, and we can be political ourselves if we want to be. in the nursery, we’re kind of down, “yes, you can have a blanket and a toy and a mirror”. we do support families to talk to their members of parliament or their mla’s about advocating for their children’s needs. they actually have more power than we. as ots, we might provide 	
   	
   guidance, and typically it’s to guide the families to be politically active, in my setting anyway. (participant , p. ) participant mentioned that ots advocate at various levels: individual, family, school board, provincially, and nationally. yeah, i think that’s very much what we do. and again, for the kids that i see, it’s being able to make sure they have access into writing programs, or being able to be included into typical school programs with peers. so it’s enabling their independence to participate fully within their community. and we have all kinds of laws and umm, school policies that promote the inclusion of all kids within the school boards, on a provincial level, on a national level. certainly with parents, a big thing that i do is help parents become more knowledgeable so they can go into the school and say “this is my child’s disability and this is what we can do to help him manage more successfully in the classroom.” so parents being able to understand how that disability impacts their child and to be able to know how to help the teacher, for example, work with their child. (p. ) participant asserted that ots help advocate for changes in external sources. she mentioned that ots advocate for their clients at an organizational level to identify efficient ways of accessing services and resources. now in the bigger picture, as an ot, i probably have a responsibility to advocate for better services or better processes, but i’m not expecting my clients to do that when they’re in a vulnerable position. … the way i think that we need to advocate is to say; this is making me inefficient and not very productive and i can’t provide as much ot service to my clients because i’m tangled up in all this other stuff. so, also my clients in the meantime are living in risky situations without this or not very good situations while they’re waiting for you to decide whether or not you are going to give them this particular thing, service, so let’s get together and figure out how we can smooth it out for everybody so the clients get served better, our services, our public services are more efficient. now, if it’s something really big, then we have to work with our organizations and see what our organization’s mandates are and see if they can help. (p. ) finally, some participants noted that ots can play a major role for enabling individuals to exercise control over their environments by identifying effective occupational therapy interventions and resources to fund them. i think ots have a much broader role and could contribute in a lot of areas, but because they haven’t traditionally in those areas, it’s difficult to make inroads, and unless there are models for them to consider…i think ots could do a lot more and need to do a lot more, we just have to find a way to get it in the system…(participant , pp. - ) 	
   	
   . . general views this section describes the ots’ general views about the chfcs with respect to their general understandings and perceived relevance of these capabilities to occupational therapy philosophy, models, and approaches with respect to the two questions: question i) what are ots’ general senses of the ten chfcs? six themes emerged: constitutes a novel approach; encompasses a range of occupational therapy practices; more theoretical than practical; more related to mental health practice; the construct of function is common to the chfcs as well as occupational therapy models; and they overlap. the following describes the quotes that support these themes. i) a novel concept almost all participants mentioned that they were unaware of the capabilities approach or the ten chfcs: yeah, i’d never heard of it. (participant , p. ) well, i’ve never heard of it before. (participant , p. ) i think i don’t know about it. (participant , p. ) ii) a range of occupational therapy practices the majority of participants mentioned that the ten chfcs are applicable to occupational therapy practice. according to the participants, although the capabilities approach was described as a new concept in occupational therapy, the principles embedded within the ten chfcs were not seen as new ideas. so what i am saying is that i see, i feel that it is applicable, yes, and at the same time i feel that some of i think that many of these things we kind of de-familiar, not familiar to ot… i think the concepts are not necessarily new. they’re framed maybe differently, for sure, but i can see bits and pieces in them in the various models. (participant , pp. - ) i think some of the terminology is different but i think the ideas are related, definitely and to some extent…(participant , p. ) some participants affirmed that the chfcs encompass many areas of occupational therapy practice. for them, it is a broad perspective that reflects many areas of occupational therapy practice. when i had a glance over it, it seems to encompass all the different areas that we would be looking for. it seems like as far as our models that we use, it would be like a conceptual model that we kind of have but a little bit more detailed, so i think it’s 	
   	
   something we would possibly use in practice but it’s interesting to see it all written out. (participant , p. ) well, i guess what i would say is that all areas of practice have clients associated with them. (participant , p. ) a number of participants mentioned that chfcs are close conceptually to occupational therapy conceptual models, and reflect shared models and approaches. it does fit in quite nicely with a lot of the models of ot, where you’re looking at physical, emotional, spiritual, all the different arenas of ot that practice that we look at and the different approaches. (participant , p. ) .. so i do see that there is a fit with occupational therapy…probably philosophy and approaches, so you know i mean if you look at some of our models…(participant , p. ) iii) more theoretical than practical some mentioned that although the majority of participants asserted that chfcs are relevant to occupational therapy models and approaches, they described them as more theoretical than practical constructs. so, which again, i think is very theoretical, and it isn’t very practical. so in a practical sense of what an occupational therapist does, i didn’t see. (participant , p. ) so i’m looking at this more from an academic than as a clinician. (participant , p. ) some participants were also concerned about how the chfcs could be applied in practice. … but there is no real guide to action. how do we apply it in services? (participant , p. ) i’m not sure how it would guide my practice. as a theoretical’s perspective around social justice, i think one of the challenges is how do we enact social justice, so we have these ideas around social justice. (participant , p. ) …it kind of delegates how we should approach working with our clients, but it doesn’t necessarily guide practice as much as some of the other models do. (participant , p. ) iv) more relate to mental health practice some participants who work in mental health practice agreed that chfcs are related to occupational therapy in the mental health area more so than other areas. they mentioned that the chfcs include important issues in mental health practice. 	
   	
   .. [chfcs relates to] models in mental health. now, when i look at some of the more psychological models and theories, i think this relates fairly closely to more of a psychological model, a large part of it. (participant , p. ) ... ots are working on that already. in mental health a lot of these things i think are very, as i am saying, it might be important also to talk to people who are working in physical rehab, because in mental health, this is very much a big part of what we’re doing. (participant , p. ) that’s the issue i think is very common, like we have the same thing with recovery philosophy in mental health. the recovery philosophy we know that people and a lot of these things are actually reflects recovery philosophy as well. (participant , p. ) v) function is common between chfcs as well as occupational therapy models a number of participants acknowledged that ots enable clients to enhance occupational performance of daily activities. they mentioned that “function” is a shared goal between the chfcs and occupational therapy approaches and models. i do see a fit with occupational therapy… you know, that we’re helping people develop, maintain or regain the capabilities to function effectively in society. (participant , p. ) according to some participants, ots attempt to maximize the persons function and to compensate for loss of function. i think in general, it fits quite well with occupational therapy because i think, our big thing is that we want to be client-centered and that we want to find things meaningful to an individual and that are function based. (participant , pp. - ) participant indicated that the chfcs constitute a basic theory of human function. …so what i thought was that this was a theory that could overarch our understanding of basic human function and interaction with others …then obviously that might be much more of a functional issue that ot might address in practice. (p. ) participant noted that the chfcs aim to restore function as much as possible. to me it is very related to recovery, very much related to recovery,.., because it is about function and it is about best possible function that somebody can have, so that’s the end point is where i see where they come together…(p. ) vi) chfcs overlap some participants described that the chfcs are closely interrelated, with many overlapping each other. 	
   	
   i think it sounds great, because they are all things that are quite important to look at in an individual’s life and they all impact on a person. so if someone is having issues with bodily integrity then it will impact all the other areas. so, they’re all very interlinked. (participant , p. ) the only other thing that i was thinking of, they are all obviously interconnected. (participant , p. ) for example they asserted that there is overlap between the first and the second capabilities (life and bodily health), and between the fourth and the fifth (sense, imagination, and though, and emotions) capabilities. question ii) how chfcs may be relevant to occupational therapy philosophy, models, and approaches? overall, the ten chfcs were described as being highly relevant to contemporary occupational therapy practice. thus, the participants were asked how the ten chfcs may be related to current occupational therapy philosophy, models, or approaches. the results describe the ten themes that emerged from the analysis of the ots’ perspectives on the relevance of the ten chfcs to occupational therapy practice. these were: the canadian model of occupational performance; the human occupational model; the person environment occupation model; a client-centered approach; a recovery philosophy; a framework for health and wellness; a human rights model; maslow’s hierarchy of needs; a social justice model; and an advocacy approach. the following describes the quotes that support these themes. i) canadian model of occupational performance many participants stated that there are similarities between the canadian model of occupational performance model and the chfcs. i can see various parts of what’s being said here in the canadian model of occupational performance…(participant , p. ) yes, absolutely. i think that, i haven’t really looked at it closely to see how it maps but on the model of occupational performance for example a number of these areas would definitely be huge environmental areas that would impact the person’s occupation for sure. a number of them would be in the inner-circle or the inner-triangle related to the person’s, probably cognitive and effective areas, maybe physical as well...(participant , p. ) some noted that the chfcs focus on more areas than the canadian model of occupational performance areas (self-care, productivity, and leisure). they asserted that the chfcs help ots 	
   	
   to analyze a client’s status in greater detail than the canadian model of occupational performance. there are some that focus more on the areas that we look at like the self-care productivity and leisure. i think that this kind of expand those, like explodes each of those, you know like self-care being bodily health, bodily integrity, and then it does a little bit more of that spiritual component in the canadian model of occupational performance that people don’t necessarily, they kind of shy away from, so it’s got that kind of sense of interaction with other species and life. (participant , p. ) in some ways, it’s more applicable than looking at self-care, productivity and leisure, right? because, for example, play is, for kids, their productivity, but it’s also their leisure. so, in the other frameworks, they don’t necessarily frame it as play and i see play as being much more complex maybe than productivity, leisure, focus. so that resonates more with me. (participant , p. ) ii) model of human occupation in addition to the canadian model of occupational performance, some mentioned that the chfcs reflect parts of the model of human occupation. …but i can see bits and pieces in them in the various models, like the models of human occupation…i can see various parts of what’s being said here in the canadian model of occupational performance. so, like bodily integrity, in both in the canadian model of occupational performance and the model of, i’m getting mixed up – cmap and moho, i prefer, it’s easier that way. so in both of them, they have the section of performance capacity, performance capacity and even the icf – there’s all about bodily functions and all that, so most of the models i think that ots are familiar with. we are concern about the body, the bodily capacities and how the bodies, i mean we take a one step further i would say, we’re looking at not just what’s the capacities are, but how those capacities are supporting or limiting a person’s ability to do the things they want to do or need to do. (participant , pp. - ) …it’s kind of that like, personal causation from the moho model where you have to have a sense that you’re effective whether it’s through your speech or through your participation in the community. (participant , p. ) iii) person-environment-occupation model/framework a few participants reported that the chfcs include aspects of the environment and person dimensions that impact a person’s occupation. participant stated that the chfcs are closely aligned with the person-environment-occupation model. well, the models that i’m most familiar with and the ones that i thought i could kind of compare this to, are the person-environment- occupation model, the canadian occupational performance model. (p. ) 	
   	
   participant also mentioned that it is consistent with the person-environment-occupation model that aims to adapt the environment and to empower individuals in order to independently participate in their society. when i first read it ..i said of course, that’s pure ot, right, i mean if you look at a person, environment and occupation model it’s kind of how can we adapt the environment so people can be as independent as possible in the things that are important, or participate as much as possible in the things that are important. (p. ) iv) a client-centered practice many participants stated that the chfcs are related to occupational therapy practice from the perspective of the client-centered practice. i think in general, it fits quite well with occupational therapy because i think, our big thing is that we want to be client-centered and that we want to find things meaningful to an individual and that are function based, so, having a reference of different things that you know, relate to an individual’s human rights seems to mesh well with occupational therapy as opposed to things that are just strictly biomedical. (participant , p. ) we have a client-centered practice and so our whole operation is about how that client is going to achieve the goals they want, have the spiritual development they want, engage with occupation that they want, and having a meaningful life and that’s kind of our bottom line…(participant , pp. - ) consistent with other responses, some participants stated that ots try to understand the clients’ interests and respect their autonomy and choices by engaging them in what they are able to do and want to do. … well, what i already mentioned, i think regardless or the different models that you may use or approaches that you may take, depending on what practice area you are working on within ot, we just want things to be more about the person and what is fulfilling for them and what do they actually want to participate in, and the goals they have for themselves. so, i can see that many of them i guess, when we talk about each one individually, that many of them would sort of fit into that idea of ot. (participant , p. ) …helping people clarify their values and their interests and their goals and then helping them to achieve what they want to do and what they feel they need to do. (participant , p. ) the majority of participants asserted that ots can enhance all the ten chfcs, but it depends on what clients want do and what they are able to do. i could do a whole lot of different things, depending on what this person wants to do. (participant , p. ) 	
   	
   and they should be in the driver’s seat; not us. they determine what they’re ready for, what would be useful for them…being able to, i think, being able to work at the persons own pace and being able to gauge where they are emotionally and being able to work on whatever they really want to work on, and really respect the clients choice in that and be able to sort of work with them as like. (participant , p. ) v) a recovery approach some participants asserted that there are similarities between the chfcs and recovery philosophy in occupational therapy practice related to mental health. to me it is very related to recovery, very much related to recovery, so the outcome of psycho-social rehabilitation is recovery. ots are one of those people who provide rehabilitation and recovery services to individuals, so their end goal is to recovery and if somebody is in recovery, you ‘re hoping that they’re able to use the capabilities and freedoms, such that they’re able to function and that two ties in the occupational therapy model, because it is about function and it is about best possible function that somebody can have, so that’s the end point is where i see where they come together…(participant , p. ). that’s the issue i think is very common, like we have the same thing with recovery philosophy in mental health. the recovery philosophy we know that people and a lot of these things are actually reflects recovery philosophy as well, …(participant , p. ). vi) framework for health and wellness some participants noted that the chfcs could be described as a health or wellness framework. but how does it [chfcs] inform the model, i think much like the determinants of health would inform the model…so, my general sense is yes, it is probably has some applicability but if i am looking at it as a framework for wellness. (participant , p. ) it kind of struck me as a world health organization type of theory. that’s what it struck me. (participant , p. ) as well, a few participants noted that the chfcs could be explained as determinants of health that are important for ots to consider in their practice. i don’t think we necessarily see ourselves addressing some of those determinants of health but i really think we need to think about them, a lot more. (participant , p. ) 	
   	
   vii) a human rights model the majority of participants described the chfcs as a relatively comprehensive set of basic rights. according to them, the chfcs provided another way to look at basic needs and freedoms. well what i thought is that, this seems like a theory that is very much a human rights kind of theory… i think that it’s a general human right, and so to me, it’s a right. (participant , pp. - ) … it’s like a basic rights and important to know. (participant , p. ) it’s all such different language right, …(participant , p. ) many participants mentioned that the chfcs look like a person’s bill of rights. according to them, these capabilities help us understand basic human rights in a systematic way. my general understanding is that it has to do with sort of, essential human rights, essentially, around a number of different areas, with respect around issues around life and death, around how healthy someone is, how their bodies going to be treated, what kind of thinking they can have, what sorts of affiliations they can have with other people and with nature, and other animals, and kind of how much control over their own environment and that might be political, it might just your home and places like that, where you work and things like that. that’s my general understanding. (participant , p. ) i think a lot of these rights, like right to education, right to political speech, a lot of them relate to human rights so it has to do with. (participant , p. ) viii) maslow’s hierarchy of needs some participants mentioned that the chfcs remind them some common knowledge that affect occupational therapy philosophy; such as, maslow’s hierarchy of needs. …as i’m reading it, one of the things that comes mind is that it’s sort of reflects some approaches that we have already been introduced to, either as students , or i guess as students, and may be even just sort of societal, just some level of common knowledge, i guess. for example, one of them, approaches are models i think about is “maslow hierarchy of needs”, and i see many of the things here vary, kind of reflecting some of what he was already talking about, so i guess that’s an example. (participant , p. ) i guess it talks a little bit about maslow’s hierarchy, like shelter. it is the most fundamental block of maslow’s hierarchy and then you get up to the top where it’s kind of the more reflective and human capabilities. i do use maslow’s hierarchy in practice and that kind of echo’s what this is saying as well…(participant , p. ) 	
   	
   ..[it’s like] what is maslow’s hierarchy called, hierarchy of what? to reach the hierarchy of needs, to reach the top of that pyramid of needs. (participant , p. ) xi) a social justice model some participants mentioned that there are similarities between the chfcs and elements of social justice models. that is, everybody has equal access to achieve their basic rights. when i read it, i thought it seems to be getting at social justice where there is a basic quality of life that everybody should be able to achieve. (participant , p. ) so you know i mean if you look at some of our models, …where they talk about social justice and human rights as part of the role of the occupational therapist, so i kind of thought it fit…(participant , p. ) my general sense is yes, it is probably has some applicability but if i am looking at it under social justice model…(participant , p. ) i saw more in the social justice approach of townsend and what she’s talked about previously in occupational therapy. (participant , p. ) x) an advocacy role some participants related the chfcs to the political and social realms; they perceived the chfcs have similar political language. they asserted that it is more about an advocacy role in relation to occupational therapy practice. so i think that some of this is a little bit more in advocacy area…some of it relates to advocacy like being part of organization and protecting organizations …we can address them by doing advocacy with employers, advocacy with educational system. the ots can do that, or we can support broader movements that are like community awareness campaign, and things like that, we can support them. that’s really our role specifically...(participant , p. ) i think a lot of them look to me like it has to do with political rights and so it would involve advocacy. (participant , p. ) . limitations and delimitations limitations are those elements that the researcher has no control over. phase one of the study could be challenging to replicate due to the inherent nature of qualitative research. the primary limitation of this phase is related to interview. as the interview was the only method for collecting data, there is a number of potential validity problems associated with self-reported 	
   	
   information. a second notable limitation is related to researcher bias. as the researcher was the key instrument of the data collection, it was possible that the researcher’s opinions about the chfcs influenced the collection, analysis and interpretation of the data. several methods were applied to minimize the researcher’s biases. these included journaling and memo writing to reveal her biases and assumptions, and to identify anything new or surprising in the data collection or analysis, and identify unexpected or incidental finding. delimitations are the elements of research design over which the researcher has control. the notable delimitation of this phase is related to the small sample size of ots. also, all participants were recruited from british columbia. . summary the main purpose of this study was to explore and describe the views of canadian occupational therapists with respect to their understandings and perceived relevance of nussbaum’s ten chfcs to their professional practices. an exploratory sequential mixed methods study was conducted in two phases. this chapter describes the qualitative exploration of the views of ots about the chfcs with respect to their understandings and perceived relevance of these capabilities to their professional practices. semi-structured interviews with ots in british columbia, canada, were conducted. the data from the qualitative interviews were analyzed thematically. the findings included parts and categories consisting of themes. the findings generated from phase one informed the development of the questionnaire survey that was used to collect data from a larger population of canadian ots in phase two that is now described in chapter . 	
   	
   . table table . phase one participants’ description n employer type clinical experience years position clients population mental health hospital/facility direct service provider manger researcher educator mixed mental health hospital/facility professional leader/coordinator educator adult school community health center direct service provider children private practice direct service provider children mental health professional leader/coordinator adult rehabilitation hospital/facility community direct service provider researcher educator mixed solo professional practice/ business direct service provider researcher educator children general hospital direct service provider adult community health center direct service provider adult educational institution general hospital faculty member researcher children educational institution mental health hospital faculty member researcher adult community health center professional leader/coordinator mixed general hospital professional leader/coordinator administrator mixed community health center direct service provider adult 	
   	
   the views of occupational therapists about central human functional capabilities with respect to their profession and practice: online survey a cross-sectional survey of a population of occupational therapists (ots) practicing in canada was conducted in phase two of this study to determine the applicability of phase one findings to a broader group of ots from across canada about the central human functional capabilities (chfcs) with respect to their profession and practice. this chapter outlines the research design, sampling, survey development and procedures, data analysis and limitations, and survey finding related to phase two. . study design a cross-sectional survey study of a population of ots who are registered with the canadian association of occupational therapists (caot) was conducted to extend the results of phase one. a non-experimental, descriptive, cross-sectional questionnaire design (jackson & furnham, ) was used. the questionnaire is the most popular data-gathering tool used in survey research. the questionnaire is designed to gather information about people’s knowledge, and perception (shepard, , p. ). with this design, data are collected at one point in time from a sample of population, which is considered useful when trying to measure attitudes or opinions at a given time (jackson & furnham, ). . . research questions with respect to exploring ots view about the chfcs in more detail, this design was selected to answer the same research questions as that in phase one. these are: . what are ots’ understandings of the chfcs? . how may the chfcs be relevant to ots’ practices? 	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
   there are over , practicing occupational therapists in canada. at the time of the study caot had a membership of approximately , . 	
   	
   . . sampling canadian ots were identified as the population for this study. survey respondents were recruited through the caot membership database. the caot membership service was contacted and the email addresses of all - caot members was purchased. the initial list of those who indicated their preferences to give their names, and their email addresses out for networking/education purposes when they renewed their membership consisted of members. as described on the caot website, there are three types of caot membership: “full- time member; part-time member; and, non-practicing member” (http://www.caot.ca/default.asp?pageid= ). the caot provided no demographic information about this population other than they were - members of all member types. the majority of the members were practicing members, and less than members were non-practicing members. . survey development . . validity when designing a questionnaire, the most important validity consideration is content validity (shepard, ). the content validity “is an important part of validating the use of a test for a particular purpose, especially when the test is educational in nature, such as when it is desired to measure a person's knowledge of specific subject matter” (sireci, , p. ). lynn ( ) asserted that content validity is “the determination of the content representativeness or content relevance of the elements/items of an instrument by the application of a two-stage (development and judgment) process” (p. ). according to her, it is essential to use the two-stages for content validity. in this research, the content validity was based on the development of major findings and expert review. jackson and furnham ( ) stated that content validity is most often established through the process of expert review. in this research, effort was made to strengthen the content validity of the questionnaire by piloting and expert review. 	
   	
   . . survey design purposive sampling was used to identify four participants for the pilot interviews to refine an initial survey and its administration and to assist with feedback on “the clarity of instructions, the comprehensibility and logical ordering of questions and the approximate length of time needed to complete the questionnaire”. the pilot interviews enhance the reliability of the questionnaire (shepard, , p. ). a questionnaire for this phase was developed based on survey design requirements, and the parts with categories consisting of themes identified from the interviews in phase one (chapter ). minor modifications to the themes were recommended by the four participants in the pilot group for clarification of some themes. these included dividing the themes “life capability is relevant to occupational therapy practice as related to acute care, palliative care, and end of life care” to “acute care” and “palliative care, and end of life care”; “bodily integrity capability is relevant to occupational therapy practice as related to a social justice and an advocacy perspectives” to “a social justice perspective” and “an advocacy perspective”; “practical reason capability is about making personal decisions” to “making personal decisions” and “helping clients to make personal decisions”; “affiliation capability is relevant to occupational therapy practice with respect to developing friendships, social network, and social skills” to “developing friendships, social network” and “social skills”; “other species capability is relevant to occupational therapy practice because relationship with animals and nature affects health” to “relationship with animals affects health” and “relationship with nature affects health”. the result of this pilot study improved the final version of the survey. . survey procedure the “exploration of the capabilities approach in contemporary occupational therapy” survey examined ots’ views regarding the themes that emerged from phase one. this survey used a five-point likert scale to examine the responses to questions related to ots’ views ( = ‘strongly disagree’ to = ‘strongly agree’). the survey was designed in three parts: ( ) closed-ended questions consisting of statements about the meaning and relevance of the chfcs to occupational therapy. the five-point likert scale assessed perceptions about these statements. the participants were asked to score them from ‘strongly disagree’ to ‘strongly 	
   	
   agree’; ( ) open-ended questions were designed to capture the participants’ additional thoughts and comments; and ( ) ten closed-ended questions were designed to obtain demographic information, including the participants’ gender, qualifying certification in occupational therapy, highest degree achieved, place of graduation, place of work, years of experiences, type of employer, area(s) of practice, type(s) of position, and the clients group. the survey questionnaire appears in appendix g. the final version of the survey was hosted at the website fluidsurveys®: http://fluidsurveys.com. the researcher selected fluidsurveys® over other online surveys because of its simplicity: allowed open and closed-ended questionnaire, flexibility, ease of use, secure, useful video tutorials, and accessibility of the support team. as well, this software enabled the researcher not only to send out personalized email invitations, but also send reminders to participants who failed to complete the survey. the survey was available on the internet using fluidsurveys® to collect and analyze data. an email was sent on august , by information technology services inviting ots to participate in the study. in total of ots were excluded based on automatic responses received stating they were not available during the period of study, bounced back and showed unsubscribed status. thus ots received. the cover email appears in appendix g. participants interested in participating in the study were instructed to click on the link (http://fluidsurveys.com/surveys/tahereh/disability-and-human-rights-ii/) provided at the bottom of the invitation email. participants were informed that if they clicked to continue they agreed to be part of the study. if they completed the survey they were eligible for a draw for a $ gift certificate and offered an electronic version of the results of the study. first reminder emails were sent on september , to participants who did not complete the survey within three weeks of the initial email. second reminder emails were sent on september , to individuals who did not complete the survey after a week. the survey went offline on october , . after the close of the survey, the results of the study were sent to participants interested in receiving them. based on the participants who responded to the survey, one name was randomly drawn to identify the winner of the $ gift certificate. 	
   	
   . data analysis quantitative data from the survey responses were analyzed with spss™ student version . basic descriptive statistics (percentages and frequencies) were calculated for the nominal and ordinal data. descriptive statistics (percentages means, and medians) were calculated for the ratio data. content analysis was used for the qualitative data. . survey results the survey yielded responses for an overall response rate of % with follow-ups. some respondents completed all questions and some provided partial responses, so the number of respondents who answered each question (or statements) vary. there were questions within sections (the demographic information, the ten capabilities, and general views). table . shows the minimum and maximum number of survey respondents to the questions in each section. overall, participants entered the draw for the gift of appreciation. the following sections summarize the responses to the questionnaire items. . . demographic information the demographic data included: gender, qualifying certification in occupational therapy, highest degree achieved, place of graduation, place of work, years of experience, type of employer, area(s) of practice, type(s) of position, and the predominant client group with whom they worked. personal information (table . ). of the ots who responded to the gender question, the majority of survey respondents ( %) were women. the disproportionate number of female ots was consistent with the literature which identifies women as comprising the majority of the ot population in canada ( . %) (canadian institute for health information (cihi), , p. ). based on ots who responded to the question about their certification in occupational therapy, ( %) had bachelor’s degree. in terms of the highest degree achieved, based on survey respondents who responded to the question, ( %) had a master’s degree or higher. according to the cihi, between and , the proportion of the occupational therapy workforce with a baccalaureate in occupational therapy declined from . % to . %, whereas the number of ots with master’s degrees in occupational therapy increased from . % to 	
   	
   . %. some % of the ot workforce had a master’s or doctorate degree as the highest overall level of education. of the ots who answered the question about how many years they have been ots, ( %) had over years’ experience. location of education (table . ). survey participants were asked to identify place of graduation in occupational therapy. of the ots who responded to this question, ( %) were canadian-educated. based on the cihi, . % of the ot workforce was educated outside canada, and the remainder ( . %) obtained their basic education in occupational therapy in canada. of the respondents who identified where they practiced, the majority ( %) practiced in ontario; and less than % in quebec. based on the cihi, of the ots who were educated within canada, . % completed their basic education in occupational therapy in ontario, . % did so in quebec and . % in alberta. practice area (table . ). of the ots who identified their type of employer, the majority worked in general hospitals ( %) and community health centers ( %). based on the cihi, . % of the occupational therapy workforce worked in hospitals, . % worked in the community and . % worked in a professional practice (cihi, ). in terms of areas of practice, of the ots, the majority worked in neurorehabilitation ( %), musculoskeletal/orthopedic ( %), and mental health ( %) areas. in terms of their primary positions, of the ots who responded to this question, ( %) were direct service providers. based on the cihi, most ots ( . %) were employed as direct service providers, while the remainder were managers ( . %), professional leaders/coordinators ( . %), educators or researchers ( . %) or held other positions ( . %) (cihi, ). regarding the age of their clients, of the ots who responded to this question, most respondents (n= or %) were working with adults, ( %) were working with seniors, and ( %) were working with children and adolescents. this sample is consistent with the cihi database in terms of gender, occupational therapy degree, education, and position, but it does not map with place of practice, and type of employer. . . occupational therapists’ views of central human functional capabilities this section examines participants’ responses to the questions about each of the chfcs and their overall views about them. of the respondents, completed all questions and 	
   	
   provided partial responses, thus the number of participants who answered each question (or statement) varies. life capability with respect to ots’ understandings of life capability, % of respondents agreed or strongly agreed that “life capability is about basic human rights”, and % of respondents agreed or strongly agreed that “life capability is about basic quality of life”. in comparison to these themes, the respondents less supported theme that “life capability is about longevity”. despite this, % of respondents were agreed or strongly agreed. regarding the relevance of life capability to occupational therapy practice, % of respondents agreed or strongly agreed that “life capability is relevant to occupational therapy practice as related to quality of life”, % of survey respondents agreed or strongly agreed that “life is relevant to occupational therapy practice as related to working with people with mental health issues”, % of survey respondents agreed or strongly agreed that “life capability is relevant to occupational therapy practice as related to working with seniors”, % of respondents agreed or strongly agreed that “life capability is relevant to occupational therapy practice as related to acute care”, and % of survey respondents “life capability is relevant to occupational therapy practice as related to palliative care and end of life care”. table . shows ots’ views of the life capability. in an open-ended question, respondents were asked to add any comments regarding their views of the life capability with respect to their understandings and perceived relevance of this capability to their professional practice. quotes from the participants appear in appendix i. for example, some participants asserted that life capability was a new concept. others mentioned that there is lack of clarity around “life not worth living”. another noted that it is about longevity: children with chronic health conditions such as cerebral palsy and spina bifida often live shortened lives. life capability is extremely relevant for this population”. (participant ) one participant mentioned that ots have roles in promoting life capability: i also think ot has to do with the potential for life capability in prevention of disability or occupational barriers due to environmental concerns (early learning), occupational barriers in adult life due to early barriers or lack of social opportunities for meaningful lifelong occupation. (participant ) 	
   	
   some participants noted that the life capability is relevant to occupational therapy practice in pediatrics, neonatal intensive care, oncology, working with children with chronic health conditions, home care, long term care, and chronic disease management. bodily health capability with respect to ots’ understandings of bodily health capability, % of survey respondents agreed or strongly agreed that “bodily health capability is a basic human right”, % of survey respondents agreed or strongly agreed that “bodily health capability is about health promotion”, and % of survey respondents agreed or strongly agreed that “bodily health is interconnected with life capability”. with respect to the relevance of bodily health capability to occupational therapy practice, % of survey respondents agreed or strongly agreed that “bodily heath capability is relevant to occupational therapy practice as related to promoting health and preventing diseases”, % of survey respondents agreed or strongly agreed that “bodily health capability is relevant to occupational therapy practice as related to feeding and/or eating”, % of survey respondents agreed or strongly agreed that “bodily health capability is relevant to occupational therapy practice as related to working with people with mental health issues”, % of survey respondents agreed or strongly agreed that “ bodily health capability is relevant to ot practice as related to advocating for adequate shelter and basic nutrition”. when queried about whether “bodily health capability is relevant to occupational therapy practice as related to reproductive health”, this level of agreement was reduced for % of survey respondents, % were not sure, and % disagreed or strongly disagreed. table . shows the ots’ views of bodily health capability. in an open-ended question, respondents were asked to add comments regarding their views of the bodily health capability with respect to their understandings and perceived relevance of this capability to their professional practice. quotes from participants appear in appendix j. for example, one participant mentioned that the bodily health capability is important when “addressing mental health issues for those with physical health problems” (participant ). one noted it is linked to life capability: “it seems this is further clarifying the previous life capability” (participant ). although one says it is interesting to include reproductive health (participant ), another stated that the occupational therapy workload does not allow therapists to include reproductive health related issues in their practices: 	
   	
   ot practice cannot encompass everything. i agree physical health for mentally ill, reproductive health and adequate shelter and nutrition are vital, but not at the top of the list of things an ot would advocate for - we do not have time. we barely have time for health promotion - we are not supported by administration for this - our resources are maxed by "putting out fires". (participant ) bodily integrity capability with respect to the ots’ understandings of bodily integrity capability, % of survey respondents agreed or strongly agreed that “bodily integrity capability is about basic human rights”. with respect to the relevance of bodily integrity capability to occupational therapy practice, % of survey respondents agreed or strongly agreed that “bodily integrity capability is relevant to occupational therapy practice as related to a client-centered approach”, % of survey respondents agreed or strongly agreed that it is relevant to their practice as related to a social justice perspective, % of survey respondents agreed or strongly agreed that bodily integrity capability is relevant to occupational therapy practice as related to an advocacy perspective, % of survey respondents agreed or strongly agreed that bodily integrity capability is relevant to occupational therapy practice as related to providing (emotional) trauma-informed care, % of survey respondents agreed or strongly agreed that it is relevant as related to addressing mobility issues, and % of survey respondents agreed or strongly agreed that bodily integrity capability is relevant to occupational therapy practice as related to referring clients to resources. table . shows the ots’ views of bodily integrity capability. in an open-ended question, respondents were asked to add comments regarding their views of the bodily integrity capability with respect to their understandings and perceived relevance of this capability to their professional practice. quotes from participants appear in appendix k. participants believe that bodily integrity capability is also about “respect for an individual’s body”, “quality of life”, “accessibility”, and “advocacy”. one participant explained it as: this relates to advocacy for universal access to services and healthcare to ensure that individuals can move physically from place to place (for example from province to province) and not to be disadvantaged by such movement. (participant ) 	
   	
   one participant mentioned that trauma-informed care is not relevant to occupational therapy practice (participant ). in contrast, other mentioned that all can be relevant in a holistic approach (participant ). senses, imagination, and thought capability with respect to the ots’ understandings of senses, imagination, and thought capability, % of survey respondents agreed or strongly agreed that “senses, imagination, and thought capability is about expressing oneself in various ways”. regarding the relevance of senses, imagination, and thought capability to occupational therapy practice, % of survey respondents agreed or strongly agreed that senses, imagination, and thought capability is relevant to occupational therapy practice in relation to people with mental health issues, % of survey respondents agreed or strongly agreed that senses, imagination, and thought capability is relevant to occupational therapy practice in relation to children with disabilities, and, % of survey respondents agreed or strongly agreed that senses, imagination, and thought capability is relevant to occupational therapy practice in relation to self-expression. table . shows the ots’ views of senses, imagination, and thought capability. in an open-ended question, respondents were asked to add comments regarding their views of the sense, imagination, and thought capability with respect to their understandings and perceived relevance of this capability to their professional practice. quotes from participants appear in appendix l. some participants mentioned this capability “…is the right to expression”, “perception”, and “experience”. this capability was thought to be relevant to all populations (participant ) including “adults with abi (acute brain injury), neurological impairment, people with physical health issues that impact on their senses, creativity and thought processes, dementia” (participant ). emotions capability with respect to the ots’ understandings of emotions capability, % of survey respondents agreed or strongly agreed that “emotions capability is about basic needs and rights” from strongly disagree to strongly agree. regarding the relevance of emotions capability to occupational therapy practice, % of survey respondents agreed or strongly agreed that “emotions capability is relevant to occupational therapy practice with respect to people with mental health issues”, % of 	
   	
   survey respondents agreed or strongly agreed that “emotions capability is relevant to occupational therapy practice with respect to children with disabilities”, % of survey respondents agreed or strongly agreed that “emotions capability is relevant to occupational therapy practice with respect to all those seen by ots”, % of survey respondents agreed or strongly agreed that “emotions capability is relevant to occupational therapy practice in relation to finding support systems”, % of the survey respondents agreed or strongly agreed that “emotions capability is relevant to occupational therapy practice in relation to helping people manage their emotions”, % of survey respondents agreed or strongly agreed that “emotions capability is relevant to occupational therapy practice in relation to teaching anxiety management skills”. table . shows the ots’ views of emotions capability. in an open-ended question, respondents were asked to add comments regarding their views of the emotions capability with respect to their understandings and perceived relevance of this capability to their professional practice. quotes from participants appear in appendix m. although some participants noted that anxiety management is an important area of occupational therapy practice to improve emotions capability and it “would be only one possible intervention that would be used to facilitate health promotion and resilience” (participant ), some mentioned “unfortunately, do not always have the time or expertise to teach anxiety management skills, except in a mental health setting” (participant ). but from a holistic approach, emotions capability is relevant to occupational therapy programs in many settings: “again, in a holistic practice all the emotions capability is interrelated to the client and client’s support system or family and can't be separate whether a client is in acute care or long term mental illness in the community”. (participant ) some participants mentioned that ots have roles in enhancing emotions capability both through building skills and advocacy. for example, one noted that, “not only teaching anxiety management skills, but other teachings like dialectical behavior therapy and chronic disease self-management [can develop emotions capability]”. (participant ) one also asserted that ots have advocacy role for preventing emotional harm for their client: additional ot roles ~ advocating at a policy level for prevention of harm (i.e., involved in child welfare from an occupational justice perspective); teaching children mindfulness 	
   	
   as a self-awareness technique with to be in touch and accepting of their emotions and state. (participant ) practical reason capability with respect to the ots’ understandings of practical reason capability, % of survey respondents agreed or strongly agreed that “practical reason capability is about making personal decisions” from strongly disagree to strongly agree. with respect to the relevance of practical reason capability to occupational therapy practice, % of respondents agreed or strongly agreed that “practical reason capability is relevant to occupational therapy practice from a client-centered perspective”, % of survey respondents agreed or strongly agreed that“ practical reason capability is relevant to occupational therapy practice from helping clients to make personal decisions”, % of survey respondents agreed or strongly agreed that“ practical reason capability is relevant to occupational therapy practice from providing educational and supportive strategies for caregivers”. table . shows ots’ views of practical reason capability. in an open-ended question, respondents were asked to add any further comments regarding their views of the practical reason capability with respect to their understandings and perceived relevance of this capability to their professional practice. a total number of nine participants’ quotes provided appear in appendix n. although for some participants the definition was not clear, some asserted that it i relevant to both clients and practitioners. for them, ots need to be reflection, i.e., “as clinicians they are reflective practitioners” (participant ), and need to respect their clients’ capacities and understand their “cognitive strengths and limitations” (participant ) because “the therapist is facilitating and not directing” (participant ). affiliation capability with respect to ots’ understandings of affiliation capability, % of survey respondents agreed or strongly agreed that “affiliation capability is about basic needs and rights, % of survey respondents agreed or strongly agreed that “affiliation capability is about social relations”. regarding the relevance of affiliation capability to occupational therapy practice, % of survey respondents agreed or strongly agreed that “affiliation capability is relevant to occupational therapy practice with respect to helping clients to identify their interests”, % of 	
   	
   survey respondents agreed or strongly agreed that “affiliation capability is relevant to occupational therapy practice with respect to developing friendships and social network”, % of survey respondents agreed or strongly agreed that “affiliation capability is relevant to occupational therapy practice with respect to advocating for their clients”, % of survey respondents agreed or strongly agreed that “affiliation capability is relevant to occupational therapy practice with respect to social skills”, % of survey respondents agreed or strongly agreed that “affiliation capability is relevant to occupational therapy practice with respect to working with clients with mental illness”. table . shows the ots’ views of affiliation capability. in an open-ended question, respondents were asked to add comments regarding their views of the affiliation capability with respect to their understandings and perceived relevance of this capability to their professional practice. quotes from participants’ appear in appendix o. some participants asserted that it is about “occupational justice” (participant ), and “discrimination”: “within and ot realm this should likely include discrimination as a result of disability versus ability. (participant ) some indicated this capability is more related to ots who “working with clients with physical disabilities” (participant ) in terms of accessibility: social interactions are often times dependent upon physical accessibility to environments that allow for these interactions to flourish. i am not quite sure why the thinking or description has parceled out mental health as if it happens in isolation from physical health. (participant ) other species capability with respect to ots’ understandings of other species capability, % of survey respondents agreed or strongly agreed that “other species capability is about the environment”. regarding the relevance of other species capability to occupational therapy practice, % of survey respondents agreed or strongly agreed, % were not sure that “other species capability is relevant to occupational therapy practice because relationship with animals affects health”, % of survey respondents agreed or strongly agreed that“ other species capability is relevant to occupational therapy practice because relationship with nature affects health”, % of survey respondents agreed or strongly agreed that “other species capability is relevant to occupational therapy practice from a spirituality perspective”, 	
   	
   % of survey respondents agreed or strongly agreed that “other species capability is relevant to occupational therapy practice from a client-centered perspective”, % of respondents agreed or strongly agreed that “other species capability is relevant to occupational therapy practice from an environmental perspective”, % of respondents agreed or strongly agreed, % were not sure, % disagreed or strongly disagreed that “other species capability is not the main focus of occupational therapy practice”. table . shows the ots’ views of other species capability. in an open-ended question, respondents were asked to add comments regarding their views of the other species capability with respect to their understandings and perceived relevance of this capability to their professional practice. quotes from participants appear in appendix p. a few participants mentioned that other species capability is not relevant to occupational therapy practice. but the majority noted “depending on the client it may well be the main focus” (participant ) and mentioned ots have to respect their clients’ choices: it may not be the main focus of ot, however our occupational relationship with other species can be integral to the client's role in the community/world, and impacts personal growth which impacts well-being. (participant ) while a client's relationship with the environment may not be the focus of occupational therapy, it may be an important component of strong programming by offering effective strategies and tools for a particular client (particularly one who is highly connected to animals, nature and the environment). (participant ) generally speaking, other species capability is relevant to occupational therapy from a client-centered perspective: with a client centered approach this could be a critical component of a person's wellbeing and enjoyment, and fulfillment of their life, and thus become a focus. (participant ) if human relationships are important in the development of a sense of self, then so too are relationships to the environment, etc. in developing a fully engaged and interactive self within the environment that an individual exists. (participant ) finally, some participant mentioned that as “we need more relationships to the natural world in diverse ways” (participant ), “this [other species capability] is integral to the practice of occupational therapy and to human life”. (participant ) 	
   	
   play capability regarding the ots’ understandings of play capability, % of survey respondents agreed or strongly agreed that “play capability contributes to human happiness”, % of survey respondents agreed or strongly agreed that “play capability contributes to or preserves quality of life”, % of survey respondents agreed or strongly agreed that “play capability contributes achieves a work/life balance”. with respect to the relevance of play capability to occupational therapy practice, % of survey respondents agreed or strongly agreed that “play capability is relevant to occupational therapy practice with respect to serving as a primary therapeutic approach in pediatric practice”, % of survey respondents agreed or strongly agreed that “play capability is relevant to occupational therapy practice with respect to serving as a therapeutic approach when working with persons with mental health issues”, % of survey respondents agreed or strongly agreed that “play capability is relevant to occupational therapy practice with respect to its importance for everyone”. table . shows ots’ views of play capability. in an open-ended question, respondents were asked to add any further comments regarding their views of the play capability with respect to their understandings and perceived relevance of this capability to their professional practice. a total number of nine participants’ quotes provided appear in appendix q. the majority of participants mentioned that the play capability is relevant to older adults too: “i believe this is of major importance for the geriatric population as well”. (participant ) control over one’s environment capability regarding the ots’ understandings of control over ones’ environment capability, % of survey respondents agreed or strongly agreed that “control over one’s environment capability is about decision-making”, % of survey respondents agreed or strongly agreed that “control over one’s environment capability is about a basic human right”, % of survey respondents agreed or strongly agreed, % not sure, % disagreed or strongly disagreed that “control over one’s environment capability is about political opinions”. with respect to the relevance of control over ones’ environment capability to occupational therapy practice, % of survey respondents agreed or strongly agreed that “control over one’s environment capability is relevant to occupational therapy practice with respect to developing decision-making”, % of survey respondents agreed or strongly agreed that 	
   	
   “control over one’s environment capability is relevant to occupational therapy practice with respect to helping clients gain and retain employment”, % of survey respondents agreed or strongly agreed that “control over one’s environment capability is relevant to occupational therapy practice with respect to advocating for their clients”. table . shows the ots’ views of the control over one’s environment capability. in an open-ended question, respondents were asked to add comments regarding their views of the control over one’s environment capability with respect to their understandings and perceived relevance of this capability to their professional practice. quotes from participants appear in appendix r. although for the majority of participants the definition was not clear, a few participants mentioned that this capability is a “fundamental inclusion” (participant ) as “enabling people to form opinions, validating opinions, building confidence/self-esteem” (participant ). general views of central human functional capabilities with respect to ots’ general understanding of the ten chfcs, % of respondents agreed or strongly agreed, were % not sure, % disagreed that “chfcs constitutes a new approach”, % of respondents agreed or strongly agreed that “chfcs encompasses a range of occupational therapy practices”, % of respondents agreed or strongly agreed, % were not sure, % disagreed or strongly disagreed that “chfcs is more theoretical than practical”, % of survey respondents agreed or strongly agreed, % were not sure, % disagreed or strongly disagreed that “chfcs is more related to mental health practice”, % of survey respondents agreed or strongly agreed, were % not sure that “the construct of function is common to the chfcs as well as occupational therapy models, % of survey respondents agreed or strongly agreed, % were not sure, and % disagreed that “they overlap each other”. regarding the relevance of chfcs to occupational therapy practice, %of the survey respondents agreed or strongly agreed that “chfcs is consistent with the canadian model of occupational performance”, % of survey respondents agreed or strongly agreed, % not sure that “the human occupational model”, % of survey respondents agreed or strongly agreed and % not sure that “the person environment occupation model”, % of survey respondents agreed or strongly agreed that “chfcs is consistent with a client-centered approach”, % of survey respondents agreed or strongly agreed and % not sure that 	
   	
   “chfcs is consistent with a recovery philosophy”, % of survey respondents agreed or strongly agreed that “chfcs is consistent with a framework for health and wellness”, % of survey respondents agreed or strongly agreed that “chfcs is consistent with a human rights model”, % of survey respondents agreed or strongly agreed and % not sure that “chfcs is consistent with maslow’s hierarchy of needs”, %of the survey respondents agreed or strongly agreed and % not sure that “chfcs is consistent with a social justice model”, % of survey respondents agreed or strongly agreed and % not sure that “chfcs is consistent with an advocacy approach”. table . shows the ots’ general views of the chfcs. in an open-ended question, respondents were asked to add comments regarding their general views of the chfcs with respect to their understandings and perceived relevance of this capability to their professional practice. quotes from participants appear in appendix s. while few participants noted some the definitions of the chfcs “are too abstract and/or multifocal” (participant ), others asserted that, “some of the thoughts fit with many ot frameworks but none of them fit with any one framework”. (participant ) but it is more related to occupational therapy practice from a holistic perspective (participant ). “though this is a theoretical model, i think it just puts what we practice into words. it frames holistic practice”. (participant ) “i think it is an interesting and comprehensive model worth exploring for ot application”. (participant ) finally, one participant saw the potential of the chfcs to serve as a model for practice. i like the capabilities approach though and would see benefit in having a capabilities model for ot. (participant ) . limitations and delimitations the most notable limitation was that the low respondents’ rate. only % of the survey was returned rate is considered low. this may be related to the fact that the respondents’ rate of return relied on the accuracy of email addresses and was dependent upon ots who opened their e-mails and chose to respond to an invitation to complete an online survey. also, survey topic was new for ots and no related studies have been reported to date. despite piloting questions and reviewing procedures of the survey, some questions remained unclear to some participants, 	
   	
   which may have resulted in misinterpretation of the survey questions. as well, this return rate may have introduced non-response bias, in which participants who returned the survey may be distinct from those who did not respond. it is possible that those who have strong opinion were more likely to respond. efforts were made to increase the return rate; one factor that may have influenced this return rate could have been ambiguity and uncertainty about the capabilities approach. the most notable delimitation of phase two was the use of an online survey. strategies were implemented to maximize the response rate to the online questionnaire; such questionnaires typically have low response rates (lozar manfreda, et al., ; aitken, power, & dwyer, ). the researcher used several strategies to maximize the response rate of this survey, e.g., inclusion of closed-ended questions; straightforward, unambiguous questions, carefully ordered questions; addressing the respondents by name; follow-up after one week; timing of the survey, i.e., at an appropriate time of year; inducements to attract the attention of respondents; offer to send a summary of the results (miller, salkind, &shepard, ; shepard ). in addition, the researcher used a modified version of dillman’s total design method ( ) to maximize survey response, such as minimizing the time for responding, making the survey interesting using carefully constructed questions (e.g., well-structured first question, easy to answer), and following up. the second delimitation of phase two was that the participants were drawn from caot members who indicated their preferences for sharing their names and their email addresses for networking/education purposes when they renewed their memberships. therefore, the survey results do not represent ots beyond this group. the third, length of the survey completed with time constraints. the survey required about minutes to complete. because of workload issues, ots may be less likely to respond to a survey or do not have time to complete it. . summary the findings generated from phase one (chapter ) informed the development of the survey that was used to collect data from a larger population of canadian ots in phase two reported in this chapter. this phase consisted a survey that used a five-point likert scale to examine the responses to questions related to ots’ views about the ten chfcs, and was hosted at the website fluidsurveys®: http://fluidsurveys.com. 	
   	
   themes that emerged from the interviews (phase one) were compared with items from the survey (phase two). in general, information was consistent across both. table . compares interview themes and survey responses about the chfcs and general views about them expressed by the occupational therapy respondents. in the following chapter, we integrate the findings and results from the analysis of the interviews and survey and discuss how they relate to one another and the existing literature. 	
   	
   . tables table . survey response rate sections	
   numbers of questions per section (total q= )	
   minimum and maximum amount of survey respondents in each section	
   percentage	
   . life capability 	
   - 	
   %- %	
   . bodily health capability 	
   - 	
   %- %	
   . bodily integrity capability 	
   - 	
   %- %	
   . sense, imagination and thought capability 	
   - 	
   %- %	
   . emotions capability 	
   - 	
   %- %	
   . practical reason capability 	
   - 	
   %- %	
   . affiliation capability 	
   - 	
   %- %	
   . other species capability 	
   - 	
   %- %	
   . play capability 	
   - 	
   %- %	
   . control over ones environment capability 	
   - 	
   %- %	
   . general views capability 	
   - 	
   %- %	
   . demographic information capability 	
   - 	
   %- %	
   	
   	
   table . personal demographic information variable	
   category	
   survey respondents (n)	
   survey respondents (percentage)	
   cihi* n= , 	
   gender 	
   	
   	
   female % . % 	
   male % qualifying certification 	
   	
   diploma % 	
   baccalaureate % . % 	
   master’s % . % 	
   professional master's % 	
   doctorate % highest education level of the occupational therapists diploma % baccalaureate % master’s % . % professional master's % phd % 	
   years of experience 	
   - years % 	
   - years % 	
   - years % 	
   - years % 	
   - years % 	
   - years % 	
   more than years % 	
   *cihi: canadian institute for health information 	
   	
   table . location demographic information variable	
   category	
   survey respondents (n)	
   survey respondents (percentage)	
   cihi* n= , place of graduation canadian-educated % . % internationally- educated % . % region of canada where respondent currently working alberta % , british columbia % , manitoba % new brunswick % newfoundland % nova scotia % ontario % , quebec % , saskatchewan % other % *cihi: canadian institute for health information 	
   	
   table . practice demographic information variable	
   category	
   survey respondents (n)	
   survey respondents (percentage)	
   cihi* n= , 	
   type of employer 	
   general hospital % . % rehabilitation hospital/facility % mental health hospital/facility % residential care facility % . % assisted living residence % community health center % group professional practice/clinic % . % solo professional practice/business % post-secondary educational institution % 	
   school or school board % 	
   association/government/para- governmental % 	
   consultative % 	
   other % 	
   areas of practice 	
   mental health % 	
   neurorehabilitation % 	
   musculoskeletal/orthopedic % 	
   cardiovascular and respiratory system % 	
   general physical health % 	
   vocational rehabilitation % 	
   palliative care % 	
   health promotion and wellness % 	
   other areas of direct service % 	
   service administration % 	
   client service management % 	
   medical/legal-related client service management % 	
   teaching % 	
   research % 	
   other % 	
   position 	
   manager % . % professional leader/coordinator % . % direct service provider % . % educator % . % researcher % other % . % clients age ranges children and adolescents ( - ) % adult ( - ) % seniors ( and older) % mixed % 	
   none % 	
   *cihi: canadian institute for health information 	
   	
   table . occupational therapists’ views of life capability 	
   variable categories strongly disagree	
   disagree	
   not sure 	
   agree	
   strongly agree	
   total responses	
   mean	
   median	
   occupational therapists’ understandings of life capability	
   	
   basic human rights	
   ( %) ( %) ( %) ( %) ( %) . . quality of life	
   ( %) ( %) ( %) ( %) ( %) . . longevity	
   ( %) ( %) ( %) ( %) ( %) . . relevance of life capability to occupational therapy practice quality of life ( %) ( %) ( %) ( %) ( %) . . working with people with mental health issues ( %) ( %) ( %) ( %) ( %) . . working with seniors ( %) ( %) ( %) ( %) ( %) . . acute care ( %) ( %) ( %) ( %) ( %) . . palliative care and end of life care ( %) ( %) ( %) ( %) ( %) . . 	
   	
   	
   table . occupational therapists’ views of bodily health capability variable categories strongly disagree	
   disagree	
   not sure 	
   agree	
   strongly agree	
   total responses	
   mean	
   median	
   occupational therapists’ understanding s of bodily health capability a basic human right ( %) ( %) ( %) ( %) ( %) . . about health promotion ( %) ( %) ( %) ( %) ( %) . . interconne cted with the life capability ( %) ( %) ( %) ( %) ( %) . . relevance of bodily health capability to occupational therapy practice promoting health and preventing diseases ( %) ( %) ( %) ( %) ( %) . . feeding and/or eating ( %) ( %) ( %) ( %) ( %) . . addressing physical health for those with mental illness ( %) ( %) ( %) ( %) ( %) . . advocatin g for adequate shelter and basic nutrition ( %) ( %) ( %) ( %) ( %) . . addressing reproducti ve health ( %) ( %) ( %) ( %) ( %) . . 	
   	
   table . occupational therapists’ views of bodily integrity capability variable categories strongly disagree	
   disagree	
   not sure 	
   agree	
   strongly agree	
   total responses	
   mean	
   median	
   occupational therapists’ understanding of bodily integrity capability	
   basic human rights ( %) ( %) ( %) ( %) ( %) . . relevance of bodily integrity capability to occupational therapy practice a client- centered approach ( %) ( %) ( %) ( %) ( %) . . a social justice perspective ( %) ( %) ( %) ( %) ( %) . . an advocacy perspective ( %) ( %) ( %) ( %) ( %) . . providing (emotional ) trauma- informed care ( %) ( %) ( %) ( %) ( %) . . addressing mobility issues ( %) ( %) ( %) ( %) ( %) . . referring clients to resources ( %) ( %) ( %) ( %) ( %) . . 	
   	
   table . occupational therapists’ views of sense, imagination, and thought capability 	
   variable categories strongly disagree	
   disagre e	
   not sure 	
   agree	
   strongly agree	
   total responses	
   mean	
   median	
   occupational therapists’ understandings of sense, imagination, and thought capability expressing oneself in various ways ( %) ( %) ( %) ( %) ( %) . . relevance of sense, imagination, and thought capability to occupational therapy practice people with mental health issues ( %) ( %) ( %) ( %) ( %) . . children with disabilities ( %) ( %) ( %) ( %) ( %) . . self- expression ( %) ( %) ( %) ( %) ( %) . . 	
   	
   	
   table . occupational therapists’ views of emotions capability variable categories strongly disagree	
   disagree	
   not sure 	
   agree	
   strongly agree	
   total responses	
   mean	
   median	
   occupational therapists’ understanding s of emotions capability basic needs and rights ( %) ( %) ( %) ( %) ( %) . . relevance of emotions capability to occupational therapy practice people with mental health issues ( %) ( %) ( %) ( %) ( %) . . children with disabilities ( %) ( %) ( %) ( %) ( %) . . all those seen by occupational therapists ( %) ( %) ( %) ( %) ( %) . . finding support systems ( %) ( %) ( %) ( %) ( %) . . helping people manage their emotions ( %) ( %) ( %) ( %) ( %) . . teaching anxiety management skills ( %) ( %) ( %) ( %) ( %) . . 	
   	
   table . occupational therapists’ views of practical reason capability 	
   variable categories strongly disagree	
   disagree	
   not sure 	
   agree	
   strongly agree	
   total responses	
   mean	
   median	
   occupational	
   therapists’	
   understandin gs	
  of	
   practical	
   reason	
   capability	
   	
   	
   	
   	
   	
   	
   	
   	
   	
   	
   	
   making personal decisions 	
   ( %)	
   ( %)	
   ( %)	
   ( %)	
   ( %)	
   	
   . 	
   . 	
   relevance of practical reason capability to occupational therapy practice 	
   	
   	
   	
   	
   	
   	
   	
   	
   	
   	
   from a client- centered perspective	
   ( %)	
   ( %)	
   ( %)	
   ( %)	
   ( %)	
   	
   . 	
   . 	
   	
   helping clients to make personal decisions 	
   ( %)	
   ( %)	
   ( %)	
   ( %)	
   ( %)	
   	
   . 	
   . 	
   	
   providing educational and supportive strategies for caregivers	
   ( %)	
   ( %)	
   ( %)	
   ( %)	
   ( %)	
   	
   . 	
   . 	
   	
   	
   	
   table . occupational therapists’ views of affiliation capability variable categories strongly disagree disagree not sure agree strongly agree total responses mean median occupational therapists’ understandings of affiliation capability basic needs and rights ( %) ( %) ( %) ( %) ( %) . . social relations ( %) ( %) ( %) ( %) ( %) . . relevance of affiliation capability to occupational therapy practice helping clients to identify their interests ( %) ( %) ( %) ( %) ( %) . . developing friendships and social network ( %) ( %) ( %) ( %) ( %) . . advocating for their clients ( %) ( %) ( %) ( %) ( %) . . developing social skills ( %) ( %) ( %) ( %) ( %) . . working with clients with mental illness ( %) ( %) ( %) ( %) ( %) . . 	
   	
   table . occupational therapists’ views of other species capability variable categories strongly disagree	
   disagree	
   not sure 	
   agree	
   strongly agree	
   total responses	
   mean	
   median	
   occupational therapists’ understandings of other species capability people's relationship with the environment ( %) ( %) ( %) ( %) ( %) . . relevance of other species capability to occupational therapy practice because relationship with animals affects health ( %) ( %) ( %) ( %) ( %) . . because relationship with nature affects health ( %) ( %) ( %) ( %) ( %) . . from a spirituality perspective ( %) ( %) ( %) ( %) ( %) . . from a client- centered perspective ( %) ( %) ( %) ( %) ( %) . . from an environmental perspective ( %) ( %) ( %) ( %) ( %) . . not the main focus of occupational therapy practice ( %) ( %) ( %) ( %) ( %) . . 	
   	
   table . occupational therapists’ views of play capability variable categories strongly disagree	
   disagree	
   not sure 	
   agree	
   strongly agree	
   total responses	
   mean	
   median	
   occupational therapists’ understanding s of play capability contribute s to human happiness ( %) ( %) ( %) ( %) ( %) . . preserves quality of life ( %) ( %) ( %) ( %) ( %) . . achieves a work/life balance ( %) ( %) ( %) ( %) ( %) . . relevance of play capability to occupational therapy practice serving as a primary therapeutic approach in pediatric practice ( %) ( %) ( %) ( %) ( %) . . serving as a therapeutic approach when working with persons with mental health issues ( %) ( %) ( %) ( %) ( %) . . its importance for everyone ( %) ( %) ( %) ( %) ( %) . . 	
   	
   	
   	
   table . occupational therapists’ views of control over ones’ environment 	
   variable categories strongly disagree	
   disagree	
   not sure 	
   agree	
   strongly agree	
   total responses	
   mean	
   median	
   occupational therapists’ understandings of control over ones’ environment about decision making ( %) ( %) ( %) ( %) ( %) . . a basic human right ( %) ( %) ( %) ( %) ( %) . . about political opinions ( %) ( %) ( %) ( %) ( %) . . relevance of control over ones’ environment capability to occupational therapy practice developing decision- making ( %) ( %) ( %) ( %) ( %) . . helping clients gain and retain employment ( %) ( %) ( %) ( %) ( %) . . advocating for their clients ( %) ( %) ( %) ( %) ( %) . . 	
   	
   	
   	
   table . occupational therapists’ general views of the ten central human functional capabilities variable categories strongly disagree	
   disagree	
   not sure 	
   agree	
   strongly agree	
   total responses	
   mean	
   median	
   occupational therapists’ general understandings of the ten central human functional capabilities constitutes a new approach ( %) ( %) ( %) ( %) ( %) . . encompasses a range of occupational therapy practices ( %) ( %) ( %) ( %) ( %) . . is more theoretical than practical ( %) ( %) ( %) ( %) ( %) . . is more related to mental health practice ( %) ( %) ( %) ( %) ( %) . . the construct of function is common to the "central human functional capabilities" as well as occupational therapy models ( %) ( %) ( %) ( %) ( %) . . they overlap each other ( %) ( %) ( %) ( %) ( %) . . relevance of the central human functional capabilities to occupational therapy practice the canadian model of occupational performance ( %) ( %) ( %) ( %) ( %) . . 	
   	
   table . occupational therapists’ general views of the ten central human functional capabilities the human occupational model ( %) ( %) ( %) ( %) ( %) . . the person environment occupation model ( %) ( %) ( %) ( %) ( %) . . a client- centered approach ( %) ( %) ( %) ( %) ( %) . . a recovery philosophy ( %) ( %) ( %) ( %) ( %) . . a framework for health and wellness ( %) ( %) ( %) ( %) ( %) . . a human rights model ( %) ( %) ( %) ( %) ( %) . . maslow’s hierarchy of needs ( %) ( %) ( %) ( %) ( %) . . a social justice model ( %) ( %) ( %) ( %) ( %) . . an advocacy approach ( %) ( %) ( %) ( %) ( %) . . 	
   	
   	
   table . comparison of themes between phase one and phase two phase one themes from semi-structured interviews phase two: survey responses (percentage of agree and strongly agree) ) life capability i: occupational therapists’ understandings of life capability themes: life capability is about basic quality of life ( %) life capability is about basic human rights ( %) life capability is about basic longevity ( %) ii: relevance of life capability to occupational therapy practice themes: life capability is relevant to occupational therapy practice as related to working with seniors ( %) life capability is relevant to occupational therapy practice as related to quality of life ( %) life capability is relevant to occupational therapy practice as related to palliative care and end of life care ( %) life capability is relevant to occupational therapy practice as related to working with people with mental health issues ( %) life capability is relevant to occupational therapy practice as related to acute care ( %) ) bodily health capability i: occupational therapists’ understandings of bodily health capability themes: bodily health capability is a basic human right ( %) bodily health capability is interconnected with the life capability ( %) bodily health capability is about health promotion ( %) ii: relevance of bodily health capability to occupational therapy practice themes: bodily health capability is relevant to occupational therapy practice as related to promoting health and preventing diseases ( %) bodily health capability is relevant to occupational therapy practice as related to feeding and/or eating ( %) bodily health capability is relevant to occupational therapy practice as related to advocating for adequate shelter and basic nutrition ( %) bodily health capability is relevant to occupational therapy practice as related to addressing physical health for those with mental illness ( %) bodily health capability is relevant to ot practice as related addressing reproductive health ( %) 	
   	
   table . comparison of themes between phase one and phase two phase one themes from semi-structured interviews phase two: survey responses (percentage of agree and strongly agree) ) bodily integrity capability i: occupational therapists’ understanding of bodily integrity capability theme: bodily integrity capability is about basic human rights ( %) ii: relevance of bodily integrity capability to occupational therapy practice themes: bodily integrity capability is relevant to occupational therapy practice as related to a social justice perspective ( %) bodily integrity capability is relevant to occupational therapy practice as related to client-centered approach ( %) bodily integrity capability is relevant to occupational therapy practice as related to addressing mobility issues ( %) bodily integrity capability is relevant to occupational therapy practice as related to an advocacy perspective ( %) bodily integrity capability is relevant to occupational therapy practice as related to referring clients to resources ( %) bodily integrity capability is relevant to occupational therapy practice as related to providing (emotional) trauma-informed care ( %) ) sense, imagination, and thought capability i: occupational therapists’ understandings of sense, imagination, and thought capability themes: senses, imagination, and thought capability is about expressing oneself in various ways ( %) ii: relevance of sense, imagination, and thought capability to occupational therapy practice themes: senses, imagination, and thought capability is relevant to occupational therapy practice in relation to self-expression ( %) senses, imagination, and thought capability is relevant to occupational therapy practice in relation to people with mental health issues ( %) senses, imagination, and thought capability is relevant to occupational therapy practice in relation to children with disabilities ( %) 	
   	
   table . comparison of themes between phase one and phase two phase one themes from semi-structured interviews phase two: survey responses (percentage of agree and strongly agree) ) emotions capability i: occupational therapists’ understandings of emotions capability theme: emotions capability is about basic needs and rights ( %) ii: relevance of emotions capability to occupational therapy practice themes: emotions capability is relevant to occupational therapy practice with respect to people with mental health issues ( %) emotions capability is relevant to occupational therapy practice with respect to children with disabilities ( %) emotions capability is relevant to occupational therapy practice with respect to all those seen by occupational therapists ( %) emotions capability is relevant to occupational therapy practice in relation to helping people manage their emotions ( %) emotions capability is relevant to occupational therapy practice in relation to teaching anxiety management skills ( %) emotions capability is relevant to occupational therapy practice in relation to finding support systems ( %) ) practical reason capability i: occupational therapists’ understanding of practical reason capability theme: practical reason capability is about making personal decisions ( %) ii: relevance of practical reason capability to occupational therapy practice themes: practical reason capability is relevant to occupational therapy practice from a client-centered perspective ( %) practical reason capability is relevant to occupational therapy practice from helping clients to make personal decisions ( %) practical reason capability is relevant to occupational therapy practice from providing educational and supportive strategies for caregivers ( %) 	
   	
   table . comparison of themes between phase one and phase two phase one themes from semi-structured interviews phase two: survey responses (percentage of agree and strongly agree) ) affiliation capability i: occupational therapists’ understandings of affiliation capability themes: affiliation capability is about social relations ( %) affiliation capability is about basic needs and rights ( %) ii: relevance of affiliation capability to occupational therapy practice themes: affiliation capability is relevant to occupational therapy practice with respect to working with clients with mental illness ( %) affiliation capability is relevant to occupational therapy practice with respect to advocating for their clients ( %) affiliation capability is relevant to occupational therapy practice with respect to developing friendships, social network, and social skills ( %) affiliation capability is relevant to occupational therapy practice with respect to helping clients to identify their interests ( %) ) other species capability i: occupational therapists’ understandings of other species capability theme: other species capability is about the environment ( %) ii: relevance of other species capability to occupational therapy practice themes: other species capability is relevant to occupational therapy practice from a client-centered perspective ( %) other species capability is relevant to occupational therapy practice from a spirituality perspective ( %) other species capability is relevant to occupational therapy practice because relationship with nature affects health ( %) other species capability is relevant to occupational therapy practice from an environmental perspective ( %) other species capability is relevant to occupational therapy practice because relationship with animals affects health ( %) other species capability is not the main focus of occupational therapy practice ( %) 	
   	
   table . comparison of themes between phase one and phase two phase one themes from semi-structured interviews phase two: survey responses (percentage of agree and strongly agree) ) play capability i: occupational therapists’ understandings of play capability themes: play capability contributes to human happiness ( %) play capability contributes preserves quality of life ( %) play capability contributes achieves a work/life balance ( %) ii: relevance of play capability to occupational therapy practice themes: play capability is relevant to occupational therapy practice with respect to its importance for everyone ( %) play capability is relevant to occupational therapy practice with respect to serving as a primary therapeutic approach in pediatric practice ( %) play capability is relevant to occupational therapy practice with respect to serving as a therapeutic approach when working with persons with mental health issues ( %) ) control over ones’ environment capability theme i: occupational therapists’ understandings of control over one’s environment capability themes: control over one’s environment capability is about a basic human right ( %) control over one’s environment capability is about decision- making ( %) control over one’s environment capability is about political opinions ( %) ii: relevance of control over ones’ environment capability to occupational therapy practice themes: control over one’s environment capability is relevant to occupational therapy practice with respect to advocating for their clients ( %) control over one’s environment capability is relevant to occupational therapy practice with respect to developing decision-making ( %) control over one’s environment capability is relevant to occupational therapy practice with respect to helping clients gain and retain employment ( %) 	
   	
   table . comparison of themes between phase one and phase two phase one themes from semi-structured interviews phase two: survey responses (percentage of agree and strongly agree) ) general views i: occupational therapists’ general understandings of the ten central human functional capabilities (chfcs) themes: chfcs encompasses a range of occupational therapy practices ( %) the construct of function is common to the chfcs as well as ot models ( %) they overlap each other ( %) chfcs constitute a new approach ( %) chfcs are more theoretical than practical ( %) chfcs are more related to mental health practice ( %) ii: relevance of chfcs to occupational therapy practice themes: chfcs are consistent with a client-centered approach ( %) chfcs are consistent with a human rights model ( %) chfcs are consistent with a framework for health and wellness ( %) chfcs are consistent with an advocacy approach ( %) chfcs are consistent with the canadian model of occupational performance ( %) chfcs are consistent with a social justice model ( %) chfcs are consistent with the person environment occupation model ( %) chfcs are consistent with the human occupational model ( %) chfcs are consistent with maslow’s hierarchy of needs ( %) chfcs are consistent with a recovery philosophy ( %) chfcs are consistent with the international classification of functioning, disability and health ( %) 	
   	
   discussion, implications, and conclusions to explore the views of canadian occupational therapists (ots) with respect to their understandings and perceived relevance of the ten central human functional capabilities (chfcs) to their professional practices, an exploratory sequential two-phase mixed methods study was conducted. we now discuss the results that emerged from our analyses of the qualitative and quantitative data in this study. in exploratory mixed methods designs, qualitative data are mixed in relation to the quantitative data (creswell & plano clark, ). thus, data from both phases are used to provide a full description of the ots’ views about the chfcs. we discuss our findings as follows. the first section describes the participants in the study overall, while the second section discusses the participants’ views of the chfcs within nussbaum’s framework in relation to the capabilities approach and the commonalities and distinctions. third, the overall findings in relation to the occupational therapy profession are discussed in terms of the profession’s established models and approaches. this also includes being consistent with such professionally-valued constructs as client-centered care, human rights, health, and social justice. fourth, these findings are discussed in relation to the occupational science literature. following these discussions, the strengths and limitations of the study overall are presented. these findings are also considered in terms of their implications for theory and practice, policy makers, and future research and practice. . participant description all participants in phase one were recruited from british columbia, whereas the survey respondents were recruited from across canada. almost all participants in both phases were women (in phase one all were women and % of survey respondents in phase two were women). the participants ranged in age. most participants in the two phases of the study were working with adults. the majority of participants in phase one ( %) held professional master' certification or higher level of education, and in phase two % held a master’s degree or higher level of education. given our participants had a high level of education, their knowledge may have been more informed than participants with less education. almost all the participants ( %) in both phases were canadian-educated (only % of survey participants were internationally-educated). all participants in phase one were from british 	
   	
   columbia, whereas participants in phase two were from across canada. the highest numbers of participants in phase two were from the province of ontario ( %) and only % were from the province of quebec. the majority of participants in both phases had over twenty years of experience as ots. given they likely had a higher level of skills and knowledge because of this experience, their views and thoughts may have been more informed than participants with less experience. although participants in both phases had experience working in multiple settings, the majority had worked mainly in hospitals and community settings. in terms of areas of practice, the study participants represented a diverse group of ots that was reflective of the demographics of ots working in canada, in general. although the study participants worked in a range of areas, most were direct service providers. despite working in various settings and areas of practice with a range of client groups, participants generally agreed about the relevance of the chfcs to occupational therapy practice. in the following section of this discussion, data from both phases regarding each of the capabilities and the general views of the participants about the chfcs are mixed to provide a complete description of the views of ots with respect to their understandings of the chfcs and their perceived relevance to occupational therapy practice. . discussion of findings in relation to the capabilities approach literature to frame our mixed findings within meaningful contexts, first, we summarized the overall findings in relation to what has been reported by the participants about their understanding of the chfcs and relevance to their practices, rather than what is occupational therapy established practice competencies. also, the findings are discussed in relation to the theoretical underpinnings of nussbaum’s descriptions of the chfcs. this enabled us to establish commonalities and distinctions among them. . . occupational therapists’ views of life capability this section describes the views of ots about the life capability with respect to their understandings of this capability and its perceived relevance to their professional practices, with reference to nussbaum’s description. nussbaum described life capability as “being able to live 	
   	
   to the end of a human life of normal length; not dying prematurely, or before one’s life is so reduced as to be not worth living”. occupational therapists’ understandings of life capability in the analysis of phase one, our study identified three themes from which the term life capability was stated: quality of life, basic human rights and needs, and longevity. the first theme was “life capability as quality of life”. in phase two, % of the survey respondents agreed or strongly agreed with this idea. based on the capabilities approach literature, a list of capabilities would be used in defining and measuring quality of life (sen, ; nussbaum, , ). the capabilities approach “specifies a space within which comparisons of life quality (how well people are doing) are most revealingly made among nations” (nussbaum, , p. ). according to sen ( ), quality of life is not simply a matter of what the person achieves, but also it is about the actual opportunity or freedom that people have to achieve what they want to do. similar to the capabilities approach literature, the participants of our study acknowledged that quality of life pertains to what “everybody should be able to achieve” (participant , p. ). the second theme was “life capability is about basic rights and needs”. the participants of our study mentioned that the right to life constitutes a basic human right that is fundamental to the human condition. in phase two, % of survey respondents agreed or strongly agreed with this claim. as we discuss later, the majority of participants of our study described the ten chfcs in terms of basic rights and needs. therefore, the participants of our study suggested that human rights can be seen as claims to certain basic capabilities or as entitlements to capabilities (sen, , ; nussbaum, , ). nussbaum argued that the ten chfcs “have a very close relationship to human rights, as understood in contemporary international discussions” (nussbaum, , p. ). nussbaum ( ) stated that “it seems valuable to understand these rights in terms of capabilities” (p. ). according to her, “the idea of human rights is by no means a crystal-clear idea”. for her, the language of capabilities helps to better understand the construct of rights. in other words, this language helps to understand “what the motivating concerns are and what the goal is”. nussbaum referred to bernard williams’ citation to support the ideas she has developed: i am not very happy myself with taking rights as the starting point. the notion of a basic human right seems to me obscure enough, and i would rather come at it from the perspective of basic human capabilities. i would prefer capabilities to do the work, and if 	
   	
   we are going to have a language or rhetoric of rights, to have it delivered from them, rather than the other way round (williams, , p. ). the third theme was “life capability is about longevity”. the study participants asserted that life capability is about “a normal life expectancy”. in comparison with the “life capability which was about basic human rights and needs”, and “quality of life”, the respondents noted life capability as less about longevity. despite this, % of respondents agreed that life capability is about longevity. the study participants’ perspectives were consistent with nussbaum’s idea about life capability, which is that all human and non-human beings are entitled to continue their lives. with respect to non-humans or animals, she explained that life capability could even be used to guide public policy in dealing with animals. specifically, nussbaum stated: utilitarian approaches focus only on sentience, and thus give animals no entitlement to life except to the extent that the interest in continuing life is one of their conscious interests. in the capabilities approach, all animals are entitled to continue their lives, whether or not they have such a conscious interest, unless and until pain and decrepitude make death no longer a harm” (nussbaum , p. ). this quotation is consistent with the finding that life capability is about longevity, but not exclusively. nussbaum that even a permanent vegetative state of a (former) human being, that this just is not a human life at all, in any meaningful way, because possibilities of thought, perception, attachment, and so on are irrevocably cut off,… the job of a decent society is to give all citizens the (social conditions of the) capabilities, up to an appropriate threshold level (nussbaum, , pp. - ). in summary, in comparison with nussbaum’s definition of the life capability, our findings are consistent with that in the capabilities approach literature. relevance of life capability to occupational therapy practice in addition, respondents to the study suggested that life capability is relevant to occupational therapy practice with respect to working with seniors ( %), palliative care and end of life care ( %), working with people with mental health issues ( %), and acute care ( %). our findings indicated that ots develop interventions to promote their clients’ quality of life and to enjoy a healthy life expectancy. the participants of our study also reported that ots contribute to enhancing the life capability of their clients through promoting health and preventing injuries and disease, reducing the side effects of medications, providing a supportive 	
   	
   environment, implementing self management programs, reducing the impact of negative determinants of health such as poverty, helping clients to be gainfully employed, and increasing their social participation and interaction. also, the participants suggested that ots along with other health professionals have a role in preserving their clients’ life capability and promoting a full life expectancy. they indicated that ots focus on meaningful engagement in occupation as key to enhancing the life capability of their clients. . . occupational therapists’ views of bodily health capability this section describes the views of ots about the bodily health capability with respect to their understandings and percieved relevance of this capability to their professional practice in reference to nussbaum’s description.nussbaum described bodily health capability as “being able to have good health, including reproductive health; to be adequately nourished; to have adequate shelter.” occupational therapists’ understandings of bodily health capability based upon the results of the qualitative interviews conducted in phase one, bodily health capability was reflected in three themes: basic human right, interconnected with the life capability, and health promotion. the first theme was to view bodily health capability as basic human rights and needs. this claim was strongly supported by % of phase two’s respondents. some participants of phase one explained the bodily health capability as the right to be physically healthy, have shelter, and have enough food. they mentioned that bodily health capability is essential and worth achieving before occupational therapy interventions. this understanding is similar to the right to health (art. ) of the universal declaration of human rights. with respect to the right to health, the un committee on economic, social and cultural rights has similarly stressed that states have a core minimum obligation to ensure: the right of access to health facilities, goods and services on a non-discriminatory basis, especially for vulnerable or marginalized groups; access to the minimum essential food which is nutritionally adequate and safe; access to shelter, housing and sanitation and an adequate supply of safe drinking water; the provision of essential drugs; equitable distribution of all health facilities, goods and services (un-who, , p. ). 	
   	
   the participants in the study asserted that people with disabilities are more likely to experience failure in being healthy and being able to achieve this capability in terms of basic needs. the views of the participants were consistent with the un proclamation that “persons with disabilities face various challenges to the enjoyment of their right to health” (un- who, , p. ). the second theme revealed in phase one was that bodily health capability overlaps with life capability. this was strongly supported by % of survey respondents. thus, bodily health and life capabilities were described as being linked given both involve longevity and survival. the third theme from which the phase one participants described the bodily health capability was related to health promotion. in phase two, % of survey respondents strongly supported this idea. the majority of participants described the bodily health capability as a physical conception of health that includes nutrition, exercise, and sleep similar to what nussbaum described. they also agreed that the bodily health capability could subsume such constructs as wellness and lifestyle management. in summary, compared with nussbaum’s definition of bodily health capability, our findings showed two distinctions. first, life capability and bodily health capability are described as being similar with no clear distinction between them. the second is that the concept of health promotion, central to an ot’s perspective, is not reflected in nussbaum’s definition. relevance of bodily health capability to occupational therapy practice a number of participants in phase one also reported that the bodily health capability is relevant to occupational therapy practice with respect to promoting health and preventing disease, feeding and eating, addressing physical health for those with mental illness, advocating for adequate shelter and basic nutrition, and addressing reproductive health. the participants of this research noted that ots’ roles in dealing with feeding difficulties and advocating for nourishment and shelter, but there are uncertainties about their role in addressing reproductive health issues. the participants suggested that improving bodily health capability not only impacts physical health but also mental health. they emphasized the importance of having an interprofessional approach to work with other health professionals to foster clients’ bodily health capability. however, although improving the bodily health capability is important to ots, managing time and workload priorities may compete with this goal. 	
   	
   . . occupational therapists’ views of bodily integrity capability the this section describes the views of ots on the bodily integrity capability with respect to their understandings and percieved relevance of this capability to their professional practice. nussbaum described bodily integrity capability as “being able to move freely from place to place; having one’s bodily boundaries treated as sovereign, i.e., being able to be secure against assault, including sexual assault, child sexual abuse, and domestic violence; having opportunities for sexual satisfaction and for choice in matters of reproduction.” occupational therapists’ understandings of bodily integrity capability the first theme that emerged from which the majority of participants in phase one described bodily integrity capability was to see it as “basic human rights”. almost all survey respondents ( %) agreed or strongly agreed with this idea. some participants defined bodily integrity capability as a basic human right to protect individuals’ against violations, harms, and injures. this constitutes a basic human right. some participants acknowledged that people with disabilities are more likely to be treated differently than people who are able-bodied. they experience more violations of bodily integrity than people without disabilities. a few participants concurred that the bodily integrity capability is essential to our rights as citizens. here, basic rights includes both to move freely from place to place, and to protect body against violation, abuse, and harm. it means everyone has the right to protect his or her body against violations including physical, emotional, and harm and injures. in this sense, our study participants’ views are similar to what nussbaum proposed. they are described people with disabilities as vulnerable to physical violence and sexual abuse. for example, participants who work with people with mental illness mentioned that these individuals are more likely to be mistreated than those who are able-bodied. those participants asserted that in contrast to common views that people who live with mental health issues are violent, they are several times more prone to violence against them (participant ). some respondents stated that many women and children with mental health issues have been sexually assaulted, abused as children, and subjected to domestic violence (participant ), and further, people with mental illness often have less capability of bodily integrity in that they are unable to move freely from place to place; their rights as citizens have been compromised (participant ). 	
   	
   the participants also suggested that bodily integrity capability is important when working with people with disabilities. for example, as participant asserted, a traumatic life is definitely part of aboriginal background, so they lose their freedom to live in their place and freely move from place to place. for some participants, the bodily integrity capability is a form of the principle of non-maleficence in that everyone should be protected from unnecessary treatment. many persons with disabilities, specifically people with mental health issues however, are not capable of making healthcare decision for themselves that would limit unnecessary tests and treatment. our finding is consistent with nussbaum’s definition of bodily integrity capability. relevance of bodily integrity capability to occupational therapy with respect to the relevance of the bodily integrity capability, the majority of participants in phase one described it as being relevant to practice in terms of a client-centered approach, a social justice perspective, and an advocacy perspective. the participants reported that ots improve the bodily integrity capability through building basic skills that help clients do what they want to do and are able to do; providing trauma-informed care to help people with mental illness who have been exposed to violence and sexual assault; advocating for their clients such as retaining or gaining jobs; addressing mobility issues; providing training to reduce safety risks in moving freely from place to place; giving clients necessary tools; providing communication devices; advocating for reasonable accessibility; and, empowering people with disabilities to advocate for themselves. . . occupational therapists’ views of sense, imagination, and thought capability this section describes the ots’ views about the senses, imagination, and thought capability with respect to their understandings and percieved relevance of this capability to their professional practice, in reference to nussbaum’s decription. nussbaum described senses, imagination, and thought capability as “being able to use the senses, to imagine, think, and reason – and to do these things in a “truly human” way, a way informed and cultivated by an adequate education, including, but by no means limited to, literacy and basic mathematical and scientific training. being able to use imagination and thought in connection with experiencing and producing self-expressive works and events of one’s own choice, religious, literary, musical, and so forth. being able to use one’s mind in ways protected by guarantees of freedom of expression with respect to both political and artistic 	
   	
   speech, and freedom of religious exercise. being able to search for the ultimate meaning of life in one’s own way. being able to have pleasurable experiences, and to avoid non-necessary pain.” occupational therapists’ understandings of sense, imagination, and thought capability this study identified one theme regarding this capability: expressing oneself in various ways. based upon the results of the qualitative interviews conducted in phase one, the majority of participants described this capability as freedom to be able to express yourself in various ways, or simply freedom. this idea was supported by % of the survey participants. these participants explained this capability as the ability to determine your meaning of life and the freedom to express your emotional, social, and political thoughts. furthermore, many participants described it as freedom to determine your own life and your meaning of life. also it was defined as freedom of expression, or a justice exercise to express one’s thoughts. in her book, frontiers of justice, nussbaum stated: for humans, this capability creates a wide range of entitlements: to appropriate education, to free speech and artistic expression, to freedom of religion. it also includes a more general entitlement to pleasurable experience and the avoidance of nonbeneficial pain (nussbaum, , p. ). similarities are seen between nussbaum’s definition of the senses, imagination, and thought capability and these participants’ understandings. these participants emphasized the existence of structural barriers within our society that prevent people from feeling as if they have that freedom of expression, to participate, and to express their thoughts and in some ways (participant ). relevance of sense, imagination, and thought capability to occupational therapy practice many participants in phase one reported that the senses, imagination, and thought capability is relevant to occupational therapy practice with respect to: self-expression, people with mental health issues, and children with disabilities. the survey participants strongly agreed with these themes. the participants noted that ots have a major role in promoting this capability by enabling their clients to express themselves freely and explore what they want to do. they also stated that improving the sense, imagination and thought capability is an area of occupational therapy related to mental health and pediatric occupational therapy. they mentioned that ots have an 	
   	
   important role in promoting this capability when examining what people can do and what they want to do. they suggested that ots use a range of activities; e.g., art and play, as indirect means to help their clients communicate and express their imaginations and thoughts. according to them, ots improve this capability by employing learning processes and coping strategies, problem solving and planning, and decision making, building communication skills and promoting literacy, providing assistive technologies, and helping clients and families to have pleasurable experiences. . . occupational therapists’ views of emotions capability this section describes the ots’ views about the emotions capability with respect to their understandings and perceived relevance of this capability to their professional practice. nussbaum described emotions capability as “being able to have attachments to things and people outside ourselves; to love those who love and care for us, to grieve at their absence; in general, to love, to grieve, to experience longing, gratitude, and justified anger. not having one’s emotional development blighted by overwhelming fear and anxiety, or by traumatic events of abuse or neglect. (supporting this capability means supporting forms of human association that can be shown to be crucial in their development.).” occupational therapists’ understandings of emotions capability this study identified one theme regarding this capability: basic needs and rights. a number of participants stated the emotions capability as a basic need and right. it was noted as the right to have the sense of safety, love and belonging. for them, this capability was described as fundamental. for the majority of the participants in phase one, the emotions capability is about a basic human right. % of the survey respondents strongly support this claim. they spoke of the critical role of this capability with respect to individual’s well-being and childhood development. a few participants described it as right to be loved and belonging. this finding is consistent with nussbaum’s definition. some participants suggested that the emotions capability reflects baseline and bottom level of needs: “i think it’s in a way it’s sort of like bodily health. like, you need the basics in order to be able to move on to other goals” (participant ). described in this way, the emotions capability is consistent with maslow’s hierarchy of basic needs necessary to achieve one’s full potential (participant ). 	
   	
   relevance of emotions capability to occupational therapy practice the majority of participants in this study reported that emotions capability is relevant to occupational therapy practice with respect to: people with mental health issues, children with disabilities, all those seen by ots, finding support systems, helping people manage their emotions, and teaching anxiety management skills. therefore, this study supported that the emotions capability described by ots as being relevant across areas of occupational therapy practice, from mental health to pediatric acute care. a number of participants mentioned that people with mental health issues and children with disabilities are emotionally more vulnerable which was an insight that emerged with respect to their perceptions about the bodily integrity capability. based on this perception, the emotions capability reflects many areas consistent with occupational therapy interventions for those populations. some participants of the study described the emotions capability as important by ots in early childhood development and leads to the development of healthy personalities. according to them, enhancing emotions capability is a fundamental component of children’s well-being. children with behavioural issues have problems with emotional development. they mentioned that ots work on emotions capability in early childhood development; such as attachment, appropriate behaviour, sensory processing, and developing basic skills. further, according to the participants, ots help people with mental health issues to manage their emotional health and help overcome their emotional problems. they suggested that ots try to find social, emotional, educational supports for their clients through improving families’ relationships and friendship. according to them, occupational therapy services help to incorporate family members and extend support networks and friendship for the clients. many participants mentioned that ots help people to manage their emotions through developing communication skills that enable them to express their emotions. as well, they asserted that ots provide communication devices to clients to enable them to make choices, communicate, and deal with their emotions. in summary the majority of participants of this study indicated that ots can support the emotions capability by helping clients engage in activities and groups; helping them to reintegrate into their lives after a traumatic event; teaching them anxiety management skills to control their emotions when re-engaging in previous activities or engaging in new ones; developing healthy emotional expression by supporting what they want to do; and providing 	
   	
   knowledge and sympathy and support to help their clients and their families to manage their fears and anxiety. . . occupational therapists’ views of practical reason capability this section describes the views of ots about the practical reason capability with respect to their understandings of this capability and its percieved relevance to their professional practices, with reference to nussbaum’s description. nussbaum described practical reason capability as “being able to form a conception of the good and to engage in critical reflection about the planning of one’s life. (this entails protection for the liberty of conscience.).” occupational therapists’ understandings of practical reason capability this study identified one theme regarding his capability: making personal decisions. a number of participants defined the practical reason capability as making personal decisions. they stated that this capability is about making good choices and having the ability to exercise control over one’s environment. according to these participants, the practical reason capability is the ability to make decisions and to make good choices. % of the survey respondents confirmed that this capability is about making personal decisions. some participants noted that practical reason capability is about reasoning and autonomy to control over one’s environment. nussbaum argued that this capability is “a key architectonic entitlement in the case of human beings. it pervades and informs all the others, making their pursuit fully human” (nussbaum, , p. ). similarities are seen between nussbaum’ definition and the participants’ views. in addition, the participants mentioned factors that impact one’s reasoning to make decisions. in particular, they raise the issue of “the information that you need” about your health conditions that influences decision making. the majority of the study participants described the practical reason capability as being relevant to practice with respect to helping clients make personal decisions. some % of survey participants agreed or strongly agreed. according to them, ots try to identify meaningful activities for their clients to improve practical reason through reflection. for them, reflection is an important part of occupational therapy practice as a means of enabling clients to plan their lives. 	
   	
   relevance of practical reason capability to occupational therapy practice based upon the interviews conducted in phase one, this study identified that the practical reason capability is relevant to ot practice from a client-centered perspective. most survey respondents ( %) supported this idea. the majority of participants mentioned that in client- centered practice, ots are regarded as facilitators who assist their clients to control their environment as much as possible. they suggested ots provide clients with necessary information to make their own decision. according to them, ots respect client’s autonomy and their independence, and try to assist them with what they want to do and able to do. although the client-centered practice is the preferred approach in occupational therapy practice, a few participants identified ambiguities and barriers that can impact a client’s ability to exercise the autonomy and planning necessary to make plans in life. some participants indicated that the practical reason capability was particularly relevant to outpatient care. they indicated that the capacity to plan life depends on one’s health condition. for example, people who are physically disabled are capable of making decisions in their lives, while people with critical health conditions, mental health illnesses, and children are less or unable to make decisions (participant ). on the other hand, some participants noted the practical reason capability as a basic skill that is relevant to occupational therapy practice across settings. they stated that ots improve the practical reason capability by providing opportunities and strategies to make decisions, even simple choices, for all clients seen by ots. for example, although people with severe disabilities are less or incapable of reflecting on their lives, they may be capable of making simple decisions about daily life with support: “they’re not maybe able to make those big life decisions, but they’re able to make decisions around a very concrete activity... so i’m going to give them the opportunity to decide. we give them the strategies; the tools to use…” (participant , p. ). some participants of the study suggested that ots believe they improve the practical reason capability by providing educational strategies. they mentioned that ots offer options and choices when working with their clients at their levels of ability. they also noted that the practical reason capability is relevant to occupational therapy practice with respect to providing educational and supportive strategies for caregivers. the majority of participants ( %) agreed or strongly agreed. supportive strategies for caregivers must include opportunities for actual 	
   	
   choices as nussbaum stated: “again, good support for practical reason in this area would be public policies that make the choice to care for a dependent a real choice, not an imposition born of social indifference (nussbaum, , pp. - ). . . occupational therapists’ views of affiliation capability this section describes the ots’ views about the affiliation capability with respect to their understandings of this capability to their professional practice. nussbaum described affiliation capability as “a. being able to live with and toward others, to recognize and show concern for other human beings, to engage in various forms of social interaction; to be able to imagine the situation of another and to have compassion for that situation: to have the capability for both justice and friendship. (protecting this capability means protecting institutions that constitute and nourish such forms of affiliation, and also protecting the freedom of assembly and political speech.) b. having the social bases of self-respect and non-humiliation; being able to be treated as a dignified being whose worth is equal to that of others. this entails, at a minimum, protections against discrimination on the basis of race, sex, sexual orientation, religion, caste, ethnicity, or national origin. in work, being able to work as a human being, exercising practical reason and entering into meaningful relationships of mutual recognition with other workers.” occupational therapists’ understandings of affiliation capability this study identified two themes regarding this capability: social relation, and basic needs and rights. the first theme from which the majority of participants of phase one stated the affiliation capability was to see it as “social relation”. most survey participants ( %) strongly supported this idea as well. they argued that this capability is “key to living”, so it’s sort of “you give and you get”. they suggested the affiliation capability is essential to living healthily, and it is critical for maintaining relationships and achieving needs. the study participants’ views are consistent with nussbaum’s claim that the affiliation capability stands out as of “special importance” (nussbaum, , p. ). the participants of this study suggested that the affiliation capability is about belonging and how people belong. in other words, “it is kind of seeking social support through attachment and pursuing social support through others” (participant ). a number of participants spoke of the importance of belonging, and social interactions. some participants noted that the affiliation 	
   	
   capability is about belonging and how people belong through attachment and social support with others, and it is fundamental to social relations as well. according to many participants in phase one, affiliation capability is relevant to occupational therapy practice with respect to advocating for their clients. this claim was strongly supported by % of survey respondents. further, they acknowledged that the affiliation capability is relevant to occupational therapy practice with respect to developing friendships, social network, and social skills. many participants ( %) agreed or strongly agreed with this idea. the second theme from which phase one’s some participants noted the affiliation capability was to see it as “basic needs and rights”. the majority of participants of phase two ( %) of the participants supported this idea. according to them, basic rights and needs described as meaning being treated with dignity, being considered equal to others, being able to meet freely and speak freely with respect to politics, and being able to work with people in a mutually respectful way. they described it as being critical for health and function as well. for them, the affiliation capability means being treated with dignity, and having a sense of belonging. this finding revealed that there were two types of remarks about basic human rights and needs: those referring to the basic rights, such as being treated with dignity and equality. for example, participant said: this is about being treated with dignity, being considered equal to others…we are very much involved in our clients and their relationships with other people and seeing them as having their own rights to engage the life they want to have and being treated with respect and with equality. that’s right, and we’re super involved politically with equal rights for those who are disabled. (p. ) and, those were referring to basic needs, such as the sense of belonging. for example, participant claimed: “again it goes back to that sense of belonging, possibly as a basic kind of human need” (p. ). relevance of affiliation capability to occupational therapy practice in phase one, the affiliation capability was also described as being relevant to occupational therapy practice with respect to helping clients identify their interests. in phase two, % of survey respondent affirmed this idea. the participants described the affiliation capability as being particularly relevant to occupational therapy practice in the mental health area. a number of participants indicated that people with mental illnesses have deficiencies in the affiliation 	
   	
   capability. most survey participants ( %) strongly agreed or agreed with this idea. in summary, based on most of the study participants’ views, ots can contribute to promoting affiliation capability through helping clients identify their interests and needs; developing friendships, social network and relationships; advocating for their clients; educating family members and others; and providing assistive technology as needed. from their perspectives, ots help to reintegrate clients into society through developing social skills. according to them, ots foster the affiliation capability in their clients through the development of meaningful relationships based on mutual respect. . . occupational therapists’ views of other species capability this section describes the views of ots about the other species capability with respect to their understandings of this capability and its percieved relevance to their professional practices, with reference to nussbaum’s description. nussbaum described other species capability as “being able to live with concern for and in relation to animals, plants, and the world of nature.” occupational therapists’ understandings of other species capability this study identified one theme regarding this capability: the idea of environment. based upon the results of the qualitative interviews conducted in phase one, some participants spoke of it as a sense of belonging and attachment to other creations. it is about people's relationship with the environment including animals, plants, and nature as described by the participants. it was described as the relationship with the living environment. most survey participants ( %) supported this theme as well. similar to nussbaum’s definition, many participants defined this capability as relationship with animals, plants, and nature. in addition, they indicated that the concept of health is deeply affected by human-environment interactions in some population. for example, “aboriginal people, connectivity and relationships with animals, plants, the land, nature, is an important part of i think how health is perceived and experienced” (participant , p. ). relevance of other species capability to occupational therapy practice some participants in phase one also reported that other species capability is relevant to occupational therapy practice because relationships with animals and nature affect health. human-animal interactions can develop social and communication skills. they asserted that having a relationship with animals depends on factors such as the cultural background of family, 	
   	
   the client’s character, and the adequacy of training of the pet (participant ). the relationship with animals can be explained from the perspective of animal-assisted therapy (participant ). sometimes, animals such as dogs are more efficient than any of the tools provided for autistic children, people with visual impairments, and people with physical disabilities to improve their relationships and to help keep them safe (participant ). not only the relationship with animals, but also the relationship with nature affects both physical and mental health (participant ). but, human-environment interaction depends on a client’s age and interests (participant ). some participants of this research mentioned that the relevance of the other species capability to occupational therapy practice can be explained from a client-centered perspective. they noted that ots need to identify their clients’ beliefs, values and interests and respect them in order to maximize their other species capability. if the relationship with the living environment is important to a client, according to the participants, ots can help him or her explore what ways this could be achieved. they also stated that the relevance of the other species capability to occupational therapy practice can be explained from a spirituality perspective as well. for some populations, according to the participants’ perspectives, the concept of health is affected by human-environment interactions and human spiritual beliefs. as well, these participants described the relevance of the other species capability to occupational therapy practice from an environmental perspective. some participants asserted that considering person-environment interaction is fundamental to occupational therapy practice. although including the other species capability in occupational therapy practice is important, it may not be a focus of occupational therapy practice according to a few participants. for them, ots may not be able to focus on developing the other species capability because of such barriers as the ots’ backgrounds, ots’ workloads, cost, and clients’ housing, and nature of their illness. just under half of participants ( %) indicated that other species capability is not the main focus of occupational therapy practice. . . occupational therapists’ views of play capability this section describes the views of ots about play capability with respect to their understandings of this capability and its percieved relevance to their professional practices, with reference to nussbaum’s description. nussbaum described play capability as “being able to laugh, to play, to enjoy recreational activities.” 	
   	
   occupational therapists’ understandings of play capability this study identified three themes regarding this capability: human happiness, quality of life, and work/life balance. all participants noted that the play capability contributes to human happiness and in turn health, in terms of recreational activities. they described the play capability as meaningful activities that enhance the individual’s quality of life and well-being. they also indicated that it contributes to work/life balance and managing stress. one of the themes from which almost all participants described play capability was to see it as happiness. this perspective strongly supported by all survey participants. happiness was described as being different things to different people from their perspectives. for some participants of this study, happiness meant the ability to pursue “your joy”. on further analysis of this finding, recreational activities and happiness were described as being closely intertwined. the second theme from which some participants described play capability was to see it as quality of life. in phase two, % of survey participants support this idea. the participants of this study indicated that recreational activities can be considered as meaningful activities that enhance the individual’s quality of life. some participants asserted that the ability to engage in recreational activities support individual’s quality of life and its well-being. the third theme from which some participants described play capability was to see it as contributing to work/life balance. most survey participants ( %) support this idea. this finding suggested that there is an imbalance in our lives between our acts. the majority of participants noted that achieving life/work balance and bringing joy into your life improves happiness and life satisfaction. one of the interesting points of this finding was that the participants described the play capability not only as bringing joy and balance into your life, but also reducing stress and pressure in daily life. thus, according to them, play can be described as being therapeutic. compared to nussbaum’s definition, this inquiry found the ots used the term ‘play’ in three ways. one way was to see play capability as happiness. the second way was to use the term as quality of life. the third way was to use the term to express work/life balance. relevance of play capability to occupational therapy practice some participants in phase one also reported play capability as being relevant to occupational therapy practice with respect to being a primary therapeutic approach. according to them, play can be a powerful therapeutic tool. occupational therapists, as the participants mentioned, focus on play in various ways. from their point of views, play provides learning 	
   	
   opportunity to develop basic physical and mental skills for children. as they noted, it also can be considered as a way to enable therapists to build therapeutic relationships and enable the parents to connect with their children. the participants asserted that the play capability is important for building a therapeutic relationship in adult with physical and mental disabilities as well. according to them, ots can adapt activities for people with cognitive and physical disabilities to develop their basic skills and to promote their ability to able to have fun and enjoy recreational activities. the participants of this study noted that play as important for everyone. the majority of participants asserted that play affects individuals’ health. the play capability was described as more than leisure activities for some participants. for them, it helps to develop positive attitudes towards self through activities. the participants mentioned that ots consider play for all ages as important in promoting health. they asserted that play activities can be used across occupational therapy settings including acute care. from their perspectives, ots engage their clients in leisure activities and recreational activities in order to help them to maintain their quality of life and to achieve a balance in daily life. some participants reported that although the play capability is important in promoting health, its improving likely depends on clients’ interests. they stated that despite the recognized importance of play, there are barriers in occupational therapy services to including the play capability across settings such as: consumer expectations, occupational therapy workload, and lack of guidelines. . . occupational therapists’ views of control over one’s environment capability this section descibes the ots’ views about the control over one’s environment capability with respect to their understandings and perceived relevance of this capability to their professional practice, with reference to nussbaum’s description. nussbaum described control over one’s environment capability as “a. political. being able to participate effectively in political choices that govern one’s life; having the right of political participation, protections of free speech and association. b. material. being able to hold property (both land and movable goods), not just formally but in terms of real opportunity; and having property rights on an equal basis with others; having the right to seek employment on an equal basis with others; having the freedom from unwarranted search and seizure.” 	
   	
   occupational therapists’ understandings of control over ones’ environment capability consistence with nussbaum’s definition, the majority of our research participants reported three themes regarding this capability: a basic human right, decision-making, and political opinions. one of the themes from which the participants noted the control over one’s environment capability was to see it as a basic human right. most survey participants ( %) supported this idea. in the analysis process, the researcher found that some participants described this capability in two ways. one way was to use the term to indicate it as a basic right. from their perspectives, basic rights were interpreted as citizenship rights that everyone as a citizen has a right to control over his/her environment. for example, “being able to own property and participate in political events, having the right to seek employment on an equal basis so it means that you wouldn’t be discriminated against, so again i think it’s largely human rights” (participant , p. ). the other way was to use the term as related to basic needs. for example, one participant mentioned that “so part of it, was making sure the individuals had the needed supplies and resources, food, shelter, meaningful occupation, that kind of thing… a lot of these individuals need diapers, they need feeding tubes, they need feeding supplies...very basic needs!” (participant , p. ). those participants were primarily concerned about “the necessary to make sure that people with vulnerable position access to resources and their basic needs”(participant , p. ). the second theme from which a number of participants mentioned that the control over one’s environment capability was to see it as being able to make their own decisions. some % of the participants confirmed this idea. a few of participants not only discussed the importance of making decisions to control your environment, but also with respect to a “treatment decision making” perspective. the study participants suggested that some people, such as people with disabilities or individuals with acute conditions, do not have control over their environment and they lose their power to make decisions. the third theme from which some participants described the control over one’s environment capability was to see it in terms of political opinion. in comparison with the two previous perspectives, survey respondents supported this theme less. despite this, % of them agreed or strongly agreed with this idea. a few of participants noted that this capability is about political thought and political choices. this finding indicated that this capability was described as meaning rights to privacy and freedom of expression, that is, political thought to be able to 	
   	
   govern, contribute, and participate in your environment. nussbaum generally views the capabilities approach as a political doctrine, she states: the capabilities approach is a political doctrine about basic entitlements, not a comprehensive moral doctrine. it does not even claim to be a complete political doctrine, since it simply specifies some necessary conditions for a decently just society, in the form of a set of fundamental entitlements of all citizens (nussbaum, , p. ). similarities are seen between nussbaum’s notion of the capabilities approach and some participants’ understandings of control over one’s environment capability. in summary, some participants of our study confirmed the importance of both political and material parts of this capability. nussbaum asserted that this capability has two prongs, the political and the material. the political is defined in terms of active citizenship and rights of political participation. on the material side, the human form of the capability includes certain sorts of protection for property rights and employment rights, including the right to form unions and the free choice of occupation (nussbaum, , p. ). a few of the study participants indicated that the challenges faced by people with disabilities to exercise control over their environments. they refer to the ethical challenges raised in related to “treatment decision making” and “political choices impact the delivery of health care”. relevance of control over ones’ environment capability to occupational therapy practice a number of participants in phase one also reported that ots improve the control over one’s environment capability by promoting relevant skills, developing decision-making, helping clients gain and retain employment, advocating for their clients, and adapting their environments to participate in society. these participants noted that ots have important roles in helping their clients seek employment by having realistic views about disability issues. they indicated that ots advocate for their clients in two ways; first, through building their skills and empower them to advocate for themselves; second, they advocate in terms of assisting clients access resources and other resources. for example, participant asserted that ots advocate for their clients across levels: individual level through building skills and developing awareness and decision-making; through family level by supporting families to advocate for their children’s needs, through school boards to foster inclusion policies, and through the organizational level to identify efficient ways of accessing services and resources for their clients. 	
   	
   finally, ots improve their clients’ control over one’s environment capability through understand their clients’ interests in order to help them do what they want to do, identify barriers to participation, and potentially beneficial occupational therapy interventions and other resources. . . occupational therapists’ general views of the chfcs this section discusses the ots’ general views about the ten chfcs with respect to their overall understandings of the ten chfcs to occupational therapy philosophy, models, and approaches, and their percieved relevance to their professional practices, with reference to nussbaum’s descriptions. occupational therapists’ general understandings of the ten chfcs the majority of study participants reported that although nussbaum’s ten chfcs constituted a new approach, the concepts themselves were familiar. in other words, although the terminology is distinct, it is not necessarily a new approach. they stated that the chfcs provide a broad perspective and encompass the range of settings of occupational therapy practice. for many participants in this study, the chfcs encompassed a range of occupational therapy practices; % of the survey participants strongly confirmed this idea. they noted that the chfcs are related to occupational therapy practice, although they are framed differently. although the findings of phase one indicated that the chfcs are more related to mental health practice, only % of the survey respondents agreed with this. this finding indicated that they are related across occupational therapy practice areas from mental health, pediatrics, seniors, and acute and palliative care. although the majority of participants who were interviewed (phase one) mentioned that the chfcs are more theoretical than practical, only % of the survey respondents (phase two) supported this idea. this finding indicated that the chfcs are applicable in both occupational therapy theory and practice. the chfcs were described by these participants as providing a broad perspective that not only aligns with occupational therapy conceptual models, but also with many areas of occupational therapy practice. for many participants in phase one, the construct of function is common to the chfcs as well as ot models. some % of the survey respondents supported this idea. according to 	
   	
   them, ots’ goal is to help clients develop or regain capabilities to achieve maximal function, or compensate for loss of function. in women and human development, nussbaum noted that the list of chfcs is “a list of capabilities or opportunities for functioning, rather than of actual functions; in part it is because the list protects spaces for people to pursue other functions that they value” (nussbaum, , p. ). like sen, nussbaum distinguished between capability and functioning (p. ). nussbaum noted “with the right educational and material support”, all human beings should be able to engage fully in the chfcs (p. ). nussbaum stated for protecting pluralism, capability rather than functioning is “the appropriate political goal” (nussbaum, , p. ; nussbaum, , p. ). nussbaum asserted that we have to respect individuals’ choices, in other word, we have to give them the chance or opportunity to make choices, and we cannot force them to functioning. with regard to people with disabilities, nussbaum raised the question of: “is it just capability that should be promoted in each of these areas, or actual functioning?” she answered “with items such as political participation, religious functioning, and play, it seems obvious that it is the capability or opportunity to engage in such activities that is the appropriate social goal.” but in other areas things such as promote actual health, self-respect, and dignity itself actual functioning should be the appropriate aim of public policy (nussbaum, , pp. - ). in addition, nussbaum assumed that children and individuals with mental health problems “functioning, rather than capability, will be an appropriate goal” (nussbaum, , ). for those people, we have to promote “actual functioning (for example, in the areas of health, shelter, bodily integrity) rather than simply capability” (nussbaum, , p. ). also, she mentioned that some of the capabilities are so important, so crucial to the development or maintenance of all the others, that we are sometimes justified in promoting functioning rather than simply capability” (p. ). therefore, as health professionals, ots must enable people with disabilities to function in a fully human way. the participants of this research reported that the main goal of both the chfcs and occupational therapy practice is to achieve maximal function. many participants in phase one of this study asserted that the chfcs are interrelated, and there is overlap among the ten capabilities. this claim was supported by % of the survey participants. they noted that all are interlinked, and they are interconnected and impact on each individual. for example, they asserted that there is overlap between the first and the second 	
   	
   capabilities (life and bodily health), and between the fourth and the fifth (sense, imagination, and thought, and emotions) capabilities. although nussbaum stated that: the list is, emphatically, a list of separate components. we cannot satisfy the need for one of them by giving a larger amount of another one. all are of central importance and all are distinct in quality. the irreducible plurality of the list limits the trade-offs that it will be reasonable to make, and thus limits the applicability of quantitative cost benefit analysis (nussbaum, , p. ). for nussbaum, “a list of separate components” does not mean that they are not overlapping in some aspects, but she stressed that there is no priority of one over others. for example, she mentioned that “reproductive health is related in many complex ways to practical reason and bodily integrity”. this gives us still more reason to avoid promoting one at the expense of the others (p. ). relevance of chfcs to occupational therapy practice a number of participants of this study described the relevance of the chfcs in relation to occupational therapy conceptual models, and approaches as well. ten themes emerged from the analysis of the ots’ perspectives on the relevance of the ten chfcs to occupational therapy practice in phase one. the survey participants supported these themes in this order: a client- centered approach ( %), a human rights model ( %), a framework for health and wellness ( %), an advocacy approach ( %), the canadian model of occupational performance ( %), a social justice model ( %), the person environment occupation model” ( %), the human occupational model” ( %), maslow’s hierarchy of needs ( %), a recovery philosophy ( %), and the international classification of functioning, disability and health (icf) ( %). although this finding showed the relevance of the chfcs to the models and approaches mentioned above, our general findings are more consistent with a client-centered approach, a human rights model, a framework for health and wellness, an advocacy approach and a social justice model. . discussion of findings in relation to the occupational therapy literature to discuss the perceived relevance of the chfcs to occupational therapy practices, we chose to examine these findings in relation to established models of and approaches to occupational 	
   	
   therapy practice. thus, we discuss our findings in relation to occupational therapy literature as follows: • chfcs as a client-centered approach • chfcs as a human rights model • chfcs as a framework for health and well-being • chfcs as a social justice approach and advocacy perspective . . chfcs as a client-centered approach for the majority of the participants in this study, the chfcs are consistent with a client- centered approach ( %). the participants of our study mentioned many examples that indicated the consistency of chfcs with a client-centered approach. for example, our findings revealed that bodily integrity capability is relevant to occupational therapy practice as related to the client-centered approach ( %). this finding indicated that enhancing bodily integrity is important to occupational therapy practice in that it reflects the process of helping to establish what clients are able to do and what they want to do. most survey participants ( %) confirmed that practical reason capability is relevant to occupational therapy practice from a client- centered perspective. in phase two, % of the participants confirmed that affiliation capability is relevant to occupational therapy practice with respect to helping clients to identify their interests. for example, participant indicated that ots are able to involve the clients in various social relations but this depends on what the person wants to do. the majority of participants ( %) of participants noted that other species capability is relevant to occupational therapy practice from a client-centered perspective. some participants of the study indicated that improving other species capability depends on clients’ interests. if other species capability is something that is meaningful to the client, ots will exploit this to help the client do what is meaningful to them (participant ). client-centered practice is “a commonly used term in occupational therapy and other health professions” (restall, ripat, & stern, , p. ). client-centered practice is described as “an approach to service which embraces a philosophy of respect for, and partnership with, people receiving services” (law, baptiste & mills, , p. ; law, , p. ). the concept of client- centered practice has been fundamental to occupational therapy profession since the s (law, 	
   	
   ; sumsion, ). based on the occupational therapy literature, client-centered practice is an enabling process and ots have a role in enabling clients to choose and perform what they want to do. clients know what they want from therapy as they are experts about their problems (mccoll et al., ; townsend, ; sumsion, ). similarly, the participants of this research noted that occupational therapy practice is focused on what clients want to do and how they achieve their goals in pursuit of a meaningful life. the participants of our study stressed that ots could be involved in developing the ten chfcs within their clients but it depends on what they want to do and what able to do. for example, participant mentioned that clients are “the driver’s seat; not us, they determine what they want” (p. ). our findings showed that one way of conceptualizing client-centered practice is respecting clients’ preferences and decisions. for example, % of participants asserted that the practical reason capability is about making personal decisions. corring and cook ( ) noted that “client involvement in decision-making and client empowerment is thought to be fundamental elements of this [client-centered] approach to practice” (p. ). some participants of our study indicated that ots respect clients’ autonomy and their decisions, and try to assist them in gaining insight into their lives with respect to what they want to do and are able to do. law et al. ( ) stated, “there may be situations when a therapist is uncomfortable with the client’s choice, more because of a difference in values than the fact that the client is not competent to make that choice” (p. ). some participants of this inquiry indicated that although ots’ goals and values may be distinct from those of clients. the ots’ goals need to match the clients’ goals; the clients’ preferences have priority in determining their goals. a few participants of our study asserted that ots give clients specific information that enable them to make appropriate decisions that fit their situations rather than what may important for therapists. respondents of the study suggested that another way of promoting client-centered practice in occupational therapy is to provide educational and supportive strategies for both clients and their caregivers ( %). the participants of the study indicated that ots use strategies that enable people to reach their goals and make decisions; for example, “ots help them to figure out what their interests and goals are; enable them to reach their goals by helping to understand what the barriers are now, and help to find the possible ways to do what they want to do. but all depends on the person’s goals and values and ability are” (participant , p. ). also, ots help caregivers 	
   	
   to understand of “how they can engage in a new process through information and education from an occupational therapist and that way they’re able to promote more independence for their kid” (participant , pp. - ). the majority of participants asserted that ots give opportunities and strategies to make decisions including simple choices, and that this is important for all clients seen by ots even people with cognitive disability. the participants noted that ots offer options and choices to clients in conjunction with work with them at their ability levels. it is similar to what nussbaum asserted, “good care for a person with a mental impairment (including elderly people with dementia or alzheimer’s) is individualized care” (nussbaum, , p. ). based on what the participants stated, ots are considered as facilitators who create an environment to assist clients to achieve their goals, and promote their independence. the participants of the study also indicated that there are barriers that impact one’s ability to exercise autonomy and planning with respect to one’s life. these include health conditions, socioeconomic factors, gender, power, culture, and age. for example, this study revealed that one of the challenges in client-centered practice is the power issue around who makes decisions. some participants emphasized that family, caregivers, or people in authority have more power to make decisions for clients than they do. thus, this power may disempower people with disabilities (participant ). implementing strategies to determine barriers is central to client-centered practice (sumsion, ; sumsion & smyth, ; wilkins et al., ; restall, ripat, & stern ). it has been suggested the knowledge and skills of therapists are often inadequate to overcome the barriers to full client-centered practice; therefore they need to be empowered by ensuring they understand the meaning of client-centered philosophy (wilkins et al., ). sumsion and smyth ( ) stated that therapists’ education can be considered a way to overcome the barriers to client- centered practice. the participants of the study noted that an understanding of the chfcs may help ots better understand client-centered philosophy. sumsion ( ) asserted, “the application of a client-centered approach is not simple” (p. ). there is no clear definition and there are no guidelines for client-centered practice (gage, ; mccoll & pranger, ; sumsion, ; stewart, ). our findings indicated that the chfcs could address a range of issues that would enable ots to better understand client-centered 	
   	
   practice. the participants of this study asserted that the chfcs can apply to both theory and practice by providing a framework that facilitates the implementation of client-centered practice. a client-centered approach applies across areas of occupational therapy practice (hobson, ; sumsion, ; stewart, ). similar to client-centered practice, this research findings revealed that the chfcs apply across areas of occupational therapy practice, from pediatrics, adults with physical and mental health issues, and across settings, including inpatient and outpatient care. based on the study participants’ views, the chfcs can apply to clients in various setting including hospitals and facilities in the community. the occupational therapy literature also indicated that the client-centered approach reflects other philosophies and approaches. sumsion ( ) asserted that the client-centered approach “can readily be combined with other approaches to practice or other models” (p. ). for example, the canadian model of occupational performance is considered a client-centered approach because a person is located at its center (law et al., , p. ). similar to a client- centered approach, this inquiry indicated that the chfcs are consistent with a variety of occupational therapy models, such as the canadian model of occupational performance ( %), the person environment occupation model ( %), and the human occupational model ( %), or, other models of client-centered practice such as maslow’s hierarchy of needs ( %). finally, according to the participants’ perspectives, the chfcs could be a useful framework for client-centered occupational therapy practice as these capabilities impact a client’s life in relevant and important ways, that link his or her care to functioning and participating effectively in society. i think it’s a great frame work though and good to recognize that all these things make a huge impact on someone’s life, so in that sense ot should all be cognizant and recognize that these are all in play for everyone, and that the individual might be having difficulty with one or two of the areas, knowing to at least address it and refer on if needed (participants , p. ). . . chfcs as a human rights model for many of the participants in this study, chfcs are about basic human rights ( %). we observed many examples that showed the relationship between the chfcs and basic human rights and needs. the majority of participants asserted that people with disabilities are more likely to experience failure to achieve these capabilities as basic needs and rights. from the 	
   	
   participants’ perspectives, people with disabilities are more vulnerable to physical violence and sexual abuse. for example, participant who works with mental illness noted that these people are more likely to be treated different that others, and that they are several times more prone to violence against them. some participants stressed that many women and children with mental health issues have sexual assault, child abuse, and domestic violence in their backgrounds. people with mental illness likely have less capability of bodily integrity and cannot move freely from place to place, so they are losing their rights as citizens. the participants suggested that basic human rights include both citizenship rights and basic needs. basic rights refer to the concept of citizenship, that is, being able to participate in the political, social, and economic parts of your society. it is about equality such as the right to seek employment on an equal base with others. it also includes basic needs. some participants asserted that ots need to ensure that people in vulnerable positions have access to resources to meet their basic needs. our findings showed that the majority of ots noted the chfcs as being associated with both “rights” and “needs”. the idea of basic human rights and needs originates from the universal declaration of human rights that “everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing, medical care, and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age, or lack of livelihood in circumstances beyond his control” (article ( )). basic rights include the right to life with disregard for race, sex, and nationality. basic needs “are the fundamental requirements sustaining healthy development, survival, and the inherent value of human beings, or the tools necessary to achieve full personal growth” (braid, ). basic needs include food, water, clothing, housing, healthcare services, and necessary social services. as discussed earlier, our findings support that human rights can be seen as claims to certain basic capabilities (sen, , ; nussbaum, , ). therefore, the chfcs have a close relationship to human rights, and the language of capabilities helps us to better understand the concept of rights, and “what the goal is” (nussbaum, ). for example, nussbaum ( ) stated that one way of thinking about the capabilities list is to think of it as embodied in a list of constitutional guarantees, in something analogous to the fundamental rights section of the indian constitution or the (shorter) bill of rights of the u.s. constitution (p. ). 	
   	
   there is debate about human rights in occupational therapy practice particularly in the context of occupational rights (wilcock and townsend ; kronenberg & pollard, ; pollard, alsop & kronenberg, ; townsend & wilcock, ; galvin, wilding, &whiteford, ). townsend & wilcock ( ) defined occupational rights “to experience meaning and enrichment in one’s occupations; to participate in a range of occupations for health and social inclusion; to make choices and share decision-making power in daily life; and to receive equal privileges for diverse participation in occupations” (p. ). wilcock ( ) noted that occupational rights can be considered as basic needs. she asserted that human beings as occupational beings need and want to engage in doing, being, and becoming (wilcock, , ). the literature emphasizes that ots need to consider human rights issues in their practices (world federation of occupational therapists, ; wilcock, ; galvin, wilding and whiteford, ). a recent study conducted by galvin, wilding and whiteford ( ) examined ots’ understandings of human rights theory and occupational justice in their practice. they studied nine therapists from various practice areas. they reported that there are difficulties with respect to the practice of human rights within occupational therapy, and it is “not easy to apply”. they noted, “there is a gap between occupational therapists’ understandings and practice of human rights” (p. ). they asserted that there is need to pay more attention to human right issues, and ots need to engage theoretically and practically in this discussion. they believe that a human rights framework may have great potential for helping occupational therapists to better see and address issues of enabling occupation and justice, not only at a population level, but also as part of their work with individual clients. to facilitate the translation of utopian ideals into practice reality, localised, contextualised discussions may prove to be most effective (pp. - ). wilcock ( ) noted that the occupational therapy profession can support the universal declaration of human rights through the concept of enabling occupation and occupational justice. our findings showed ots support the universal declaration of human rights through enhancing chfcs in their clients. hammell ( ) noted, ‘‘occupational therapy could be the profession committed to attaining occupational rights and to enabling people to engage in meaningful occupations’’(p. ). the participants of this study asserted that ots could improve the occupational rights of their clients through enabling people to achieve the chfcs. 	
   	
   in contrast to the study by galvin, wilding and whiteford ( ) that reported ots work in relation to the basic needs of their clients rather than in recreational activities, our findings indicated that ots view themselves as supporting the ten chfcs in relation to recreational as well as basic needs. according to our study participants’ views, consideration of the applicability of the chfcs in occupational therapy practice may reflect a greater sense of responsibility of ots to their clients. therefore, ots are required to do a lot more than what they do currently (participant , p. ). similarly, galheigo’s study ( ) noted “addressing human rights issues brings forth ethical and political responsibilities for ots and requires new epistemological and educational approaches” (p. ). galheigo also noted “addressing human rights requires new approaches to problems and new conceptual tools for occupational therapy and rehabilitation” (p. ). we assume that chfcs can be considered as a conceptual framework for addressing human rights as part of established occupational therapy practice. finally, based on the majority of our participants’ views, the chfcs constitute another way to think about basic rights and needs. the chfcs challenge ots to consider occupational rights in the broad context of human rights. i think it gives a little bit of fresh air or play to think about the things that we think about in a bit of a different way. i think if you’re saying this is, these are the kind of rights of people, is this a rights-based thing, then i think we have a lot more work to do than we do currently. so, it may propel our profession to attend to some of these issues in a more deliberate way (participant , p. ). . . chfcs as a framework for health and well-being the participants of this study suggested that chfcs is consistent with a framework for health and wellness ( %). they noted that health has a broader definition than physical health. the world health organization defined health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (who, ). a number of our participants asserted that health is a multi-dimensional construct that includes domains related to physical, emotional, social, and environmental factors. our findings revealed two ways of addressing the chfcs as a framework for health and well-being: “quality of life” (qol), and “health promotion”. one way of presenting the chfcs as a framework for health and well-being is related to 	
   	
   qol. the construct of health and well-being is related to the construct of qol (guyatt, feeny, & patrick, ; wilson & cleary, ; zikmund, ). based on our findings, the chfcs are related to qol. for example, our findings showed that life capability is about basic qol ( %). or, play capability contributes to and preserves qol ( %), and helps achieve a work/life balance ( %). quality of life has been defined by many thinkers and philosophers and widely used across disciplines and academic areas, e.g., healthcare, economics, and the social sciences (cummins, ). there are varying views regarding the conceptualization and measurement of qol across disciplines (velde, ; ruta, camfield, & donaldson, ; cummins, ). today, qol is been given increasing attention in the rehabilitation sciences literature. the rehabilitation literature includes more than definitions and models of qol (velde, ). conceptualizing and assessing qol have been documented extensively in the occupational therapy literature as well. willard & spackman's occupational therapy defined qol as “engagement in or creation of opportunities for occupation to whatever extent possible on a physical, social, cultural, emotional, symbolic, sexual or spiritual level” (hopkins & smith, , p. ). quality of life is evaluated in part in occupational therapy practice through the evaluation of an individual’s meaningful activities. as cited: “engaging in meaningful activities that lead to developing new skills and pleasurable interaction with the social and inanimate environment can be seen as leading to an enhanced qol” (hopkins & smith, , p. ). as the literature indicated, occupational therapy programs increase the qol of people with disabilities through engaging them in meaningful and purposeful activities, or creating opportunities for them to be or do whatever they wish. according to some participants in this study, increasing and improving clients’ qol is the main focus of occupational therapy practice. for some of our participants, qol refers to “improving a life worth living” for people with disabilities. for them, ots can help start building a life worth living through improving clients’ capabilities. in other words, ots try to focus on enhancing chfcs as the key to promote clients’ qol. occupational therapists have been reported to augment qol in various groups and settings, e.g., patients with stroke (adkins, ; gillen & burkhardt, ; mayo, wood-dauphine & cote, ); elderly people through meaningful activities (glass et al., ; lennartsson, & silberstein, ); and people with developmental disabilities (lee et al., ); those with 	
   	
   intellectual disabilities (id) (cummins, ; cummins, ), and families with children with disabilities (lee et al., ). comparable to the literature, our findings showed that improving qol across areas of occupational therapy practice, including working with children with disabilities and their families, people with mental health issues, seniors, and palliative care and end of life care. for example, our finding indicated that ots improve qol for both clients and their caregivers by creating supportive environments: occupational therapists are involved in creating an environment that supports normal development and that also supports family interaction and promotes health for the family but also the baby, so we are part of that team that tries to, i’m not going to use the word normalize, because it’s never going to be a normal environment, but tries to have an environment that is supportive of a healthy life, as much as possible. (participant , p. ) some participants of the study not only emphasized the ots’ role in improving the clients’ qol, but also their roles in enhancing their caregivers’ qol. this is similar to nussbaum’s claim about the necessity of supporting caregivers: on the side of the caregiver, we have, once again, a wide range of concerns. caregivers frequently lose out in all sorts of ways through bad arrangements. their health suffers; their emotional equanimity is sorely compromised; they lose many other capabilities they otherwise would have had. a decent society cannot ensure that all caregivers actually have happy lives: but it can provide them with a threshold level of capability in each of the key areas. (nussbaum, , p. ) quality of life is described in the occupational therapy literature in relation to health related factors such as physical, functional, emotional and mental well being, and to non-health related elements such as jobs, family, friends, and other life circumstances (gill & feinstein, ; velde, ). similarly, based on the study participants’ views, ots promote their clients’ qol by considering both health and non-health factors. for example, as they mentioned, ots contribute in increasing the clients’ qol through promoting health, preventing injury, implementing self management programs, increasing social participation and interaction, and providing a supportive environment. the multidimensional construct concepts of qol in the occupational therapy literature is consistent with sen’s conceptualization of qol. from sen’s perspective, qol refers to the freedom or real opportunities people have, to do what they want to do rather than what results in the best consequences (sen, , nussbaum, , nussbaum, ). sen argued that qol and 	
   	
   well-being is best understood in terms of capabilities (gasper, ; clark, ). accordingly, the greater a person’s capabilities, then the greater is his or her well-being (clark, ). some participants noted that another way of integrating the chfcs into occupational therapy practice is in relation to health promotion. the first international conference on health promotion held in ottawa in , presented a charter for promoting health for all. in the ottawa charter, health promotion is defined as: health promotion is the process of enabling people to increase control over, and to improve, their health. to reach a state of complete physical, mental and social well- being, an individual or group must be able to identify and to realize aspirations, to satisfy needs, and to change or cope with the environment. health is, therefore, seen as a resource for everyday life, not the objective of living. health is a positive concept emphasizing social and personal resources, as well as physical capacities. therefore, health promotion is not just the responsibility of the health sector, but goes beyond healthy life-styles to well-being. (who, ) the ottawa charter (who ) advocated that health experts advocate for health overall, and enable people to promote their health and well-being. according to seymour ( ), occupational therapy has an important contribution to health promotion. finlayson and edwards ( ) considered ots as facilitators who link individuals and their environments in an enabling process through either advocacy or the sharing of skills and information (dyck, ). our findings showed that ots have roles in promoting health and preventing diseases through an enabling process to improve individuals’ ability to manage their own health and advocate for themselves. scaffa, van slyke, and brownson ( ) stated that there are three critical roles for ots to contribute in health promotion and disease prevention: “to promote healthy lifestyles; to emphasize occupation as an essential element of health promotion strategies; and to provide interventions, not only with individuals but also with populations” (p. ). some participants of our study emphasized that ots promote health through focusing on the chfcs to create healthy lifestyles and changing lifestyles to prevent disease. they stressed the role of ots in enhancing their clients’ healthy lifestyles; for example, enhancing clients’ bodily health capability through addressing feeding issues in children with disabilities, addressing physical health for mental illness, and preventing disease for elderly. the world federation of occupational therapists states "occupational therapy is as a profession concerned with promoting health and well being through engagement in 	
   	
   occupation"(wfot, ). wilcock ( ) asserted that ots promote health and prevent disease and disability for all people through focusing on purposeful and meaningful occupations. some participants of this research noted that ots promote healthy lifestyle through maximizing the chfcs of their clients. the literature identified some barriers to promoting health in occupational therapy practice. for example, seymour ( ), who surveyed ots in wales, reported that restrictions such as the pressure of work, funding, and resources contribute to health promotion not being considered occupational therapy’s first priority. similar barriers were reported by flannery and barry ( ), who surveyed members of the association of occupational therapists of ireland about their perceptions of health promotion. in addition, they found other barriers included staffing levels, lack of resources, and lack of knowledge and training. our findings indicated that although improving health is important to ots, managing workload priorities can be challenging. finally, based on some participants’ views, nussbaum’s chfcs help ots consider more health determinants and the environmental context in their practices. for them, the chfcs are essential for individuals’ well-being. as for a health practitioner who works with vulnerable populations, as they mentioned, it is important to consider them in relation to health and functioning. …i think it would probably be a good thing for all of us, from whatever area of life we are in to reflect on, and too see if, for ourselves personally if, what we think about, how this is playing out in our own lives, but because we’re in a health care system, we certainly do need, and we have some positions of authority, power with people who are very vulnerable, then we need to be keeping capabilities like this in mind as we go through and make our decisions that affect their life, very dramatically at times. (participant , p. ) . . chfcs as a social justice approach and advocacy perspective the present study indicated that the chfcs are relevant to occupational therapy practice from the perspective of social justice ( %) and an advocacy perspective ( %). we observed various examples showing the relationship between the chfcs and social justice and advocacy perspectives. for example, our study participants reported that the bodily integrity capability is relevant to occupational therapy practice as related to social justice ( %); bodily integrity capability is relevant to occupational therapy practice as related to an advocacy perspective 	
   	
   ( %); bodily integrity capability is relevant to occupational therapy practice as related to referring clients to resources ( %); emotions capability is relevant to occupational therapy practice in relation to finding support systems ( %); affiliation capability is relevant to occupational therapy practice with respect to advocating for their clients ( %); and the control over one’s environment capability is relevant to occupational therapy practice with respect to advocating for their clients ( %). these findings indicated that the capabilities approach is consistent with being a social justice approach as nussbaum ( ) claimed: the capabilities approach simply specifies some necessary conditions for a decently just society, in the form of a set of fundamental entitlements of all citizens. failure to secure these to citizens is a particularly grave violation of basic justice, since these entitlements are held to be implicit in the very notions of human dignity and a life that is worthy of human dignity. (p. ) the debate on social justice is the largest tradition in political history. literature indicated there are two major approaches regarding social justice: social contact, and social choice theory. the social contract approach concentrated on “perfectly just social arrangements” and “just institutions”. enlightenment thinkers who made the major contributions of the social contract approach are thomas hobbes, john locke, jean-jacques rousseau, and immanuel kant. in contemporary political philosophy, the social contract approach has been the dominant influence on john rawls and his idea of “justice as fairness” (sen, , p.xvi). in a theory of justice ( ), rawls outlines two principles of justice; the priority of equality and fair opportunity for all citizens. in political liberalism ( ), rawls claims that in a pluralistic liberal society, the public conception of justice is a moral conception that considers citizens as free and equal persons. rawls noted that right and just institutions can guarantee the priority of equality and fair opportunity for all citizens. rawls defined justice “entirely in relation to perfectly just institutions” (sen, , p. ). in contrast, social choice theory concentrated on “a variety of approaches that shared a common interest in making comparisons between different ways in which people’s lives may be led, influenced by institutions but also by people’s actual behavior, social interactions and other significant determinants”. major contributions to social choice theory have been made by other enlightenment philosophers including smith, condorcet, wollstonecraft, bentham, marx, and john stuart mill (sen, ). sen ( ) stated that there is no agreement about the nature of the ‘just society’. he noted that social contract theory has “far-reaching implications”. so, sen stated 	
   	
   that there is “the need to focus on actual realizations and accomplishments, rather than only on the establishment of what are identified as the right institutions and rules” (p. ). sen stressed for understanding justice, it is important to understand ‘the kind of lives that people can actually lead’, their actual behavior; in other words, human lives and experiences. he writes: “the need for an accomplishment-based understanding of justice is linked with the argument that justice cannot be indifferent to the lives that people can actually live.” (p. ). for sen, the capability or capabilities approach is linked to social choice theory. in recent years, along with other professionals, ots have demonstrated an interest in the social justice discussion. in , elizabeth townsend noted, “the profession promotes social justice through practical approaches that enable people to develop their occupational potential” (townsend, , p. ). the concept of social justice is reflected in the term ‘occupational justice’ in the occupational therapy literature (christiansen & townsend, ; townsend & wilcock, ; wilcock & townsend, , braveman and suarez-balcazar ). occupational justice is better understand in terms of occupational alienation, occupational apartheid occupational deprivation, occupational marginalization, and occupational rights in the occupational therapy literature (kronenberg et al., ; kronenberg & pollard, ; townsend & wilcock, ; whalley- hammel, ; whiteford, ; wilcock & townsend, ; zeldenryk & yalmambirra, ). wilcock and townsend ( ) employed the term occupational justice to refer to the "equitable opportunity and resources to enable people's engagement in meaningful occupations" (p. ). from some of our participants’ perspectives, occupational justice can be considered as the opportunity to achieve the chfcs. they indicated that ots have major roles in advocating for their clients’ chfcs, and enabling clients to achieve them. as discussed earlier, according to them, ots advocate for their clients through building their skills and developing their chfcs; supporting families to advocate for their dependents, through the organizational bureaucracy, e.g., to identify efficient ways of accessing services and resources for their clients. finally, as the participants noted, the chfcs can be considered as a framework for understanding occupational justice and they contribute to the occupational deprivation literature described in the next section. 	
   	
   . discussion of the finding in relation to the occupational science literature to discuss the perceived relevance of the chfcs to occupational therapy practices, we chose to discuss our finding in relation to the occupational science literature as well. this study revealed that occupation can be conceptualized in light of the capabilities approach. from this perspective, occupation can be seen as opportunities to realize basic capabilities or as entitlements to capabilities. accordingly, occupation may be operationalized as the opportunity to achieve or extend the chfcs. the understanding of occupation has been facilitated by the contribution of multiple disciplines from psychology, sociology, geography and economics, to leisure science, public health and occupational therapy (yerxa et al., ). occupation has become an inclusive term such that it has relevance to health and healthcare including activities of daily living (yerxa et al., ; zemke & clark, ; hinojosa & kramer, ; law, polatajko, baptiste, & townsend, ); goal-directed activities (christiansen, baum, & bass-haugen, ); and activities or situations in which “people engage to fulfill their time and give life meaning” such as avocations and vocations (hinojosa & kramer, , p. ). occupation can also be viewed in relation to other constructs. for example, social ecologist, brian little ( ), developed the personal projects approach (christiansen, little, & backman, ; christiansen, backman, little, & nguyen, ). based on this approach, activities are understood as a way to link “motives or needs to specific goal-directed behaviors” (christiansen, little, & backman, , p. ). occupation can also be viewed from the perspective of activity theory rooted in the work of marx, vygotsky, and leont'ev (engestrom, ; shanahan, , ). based on this theory, activities are considered in relation to subject, object, actions, and operations (shanahan, ). “in activity theory, the distinction between short-lived goal-directed action and durable, object-oriented activity is of central importance” (engestrom, , p. ). these various unique and overlapping perspectives are useful in further exploration of the construct of occupation. occupation can also be characterized and described through the framework of person- centered, context-centered, and person/context-centered perspectives. based on these perspectives, several additional theories and models can be used to augment our understanding of occupation. 	
   	
   the person-centered framework of occupation the person-centered framework of occupation consists of four components including physical-biomedical (stewart, ), emotional-psychological (krupa, ), spiritual (urbanowski & vargo, ; christianson, ; mccoll, ), and cognitive-neurological (doubt, ). identifying and labelling these person-centered components of occupation facilitates broader discussion and supports the need for contributions from various disciplines. the physical-biomedical component of the person focuses on functional movement related to occupational engagement and applies mechanical principles to effect physical movement (pedretti & early, ). this dimension is best evaluated by such metrics as joint range of motion, capacity for motion, strength, stability, control, and endurance that are needed during meaningful tasks and activities (dutton, , ; pedretti & early, ; kielhofner, ; stewart, ). with cardiopulmonary, musculoskeletal, neurological, endocrine and immune dysfunction, the physical-biomedical dimension of occupation is disrupted (hinojosa, kramer, & nuse, ; dutton, ). remediation of physical-biomedical impairment is the basis of most medical and rehabilitation practices. theories, models, and approaches based on the emotional-psychological component of the person concentrate on meaningful engagement in occupation as “the key to creating a healthy body and mind” (schwartz, , p. ). this dimension focuses on the therapeutic, valued and creative nature of a person’s occupations. engaging in pleasurable, meaningful, employment- related or educational occupations is thought to support the physical body, nurture the mind, and influence “a new life upon recovery” (barton, , p. , cited in schwartz, ). conversely, occupations that erode these occupational attributes can erode a person’s self- esteem and self-worth (hochschild, ; grandey, ; brotheridge & lee, ; grandey, ). various approaches have been used to address the emotional-psychological dimension of the person. for example, behavioral therapy is used to improve self-awareness, self-expression, and self-esteem (jodrell & sanson-fisher, ; stein, ; duncombe, ); learning theory and approaches may be implemented to improve functional skills (maslen, ; mosey, ; nickel, ; early, ; cronin, ; neistadt & crepeau, ); a psycho-educational approach to build understanding and skills to facilitate self-management (barlow, turner, wright, ; lorig et al., ); and a motivational approach to mitigate deficits related to 	
   	
   emotional health that affect behavior and occupational engagement (sharrott & cooper-fraps, ; schwammle, ). the spiritual component of the person and its relationship to occupation is integral. spirituality has been defined as the experience of meaning and purpose in daily activities and all aspects of life (urbanowski and vargo, ; christianson, ; mccoll, ; caot, ) is now a core construct within the canadian model of occupational performance (wilson, ; barry & gibbens, ; caot, ). approaches addressing the spiritual component focus on the individual’s religious and spiritual beliefs systems and ways of being (christiansen, ; howard & howard, ; engquist et al., ; mccoll, ). engaging in meaningful activities can serve as a vehicle for a person to express and nurture spiritual needs (egan & de laat, ; mccoll, ; tse et al., ; bassett et al., ; feeney & toth-cohen ; barry & gibbens, ). mccoll ( ) proposed that spirituality provides meaning to activities, and meaningful activities can promote spirituality. in turn, religious and spiritual beliefs may influence occupational choices and level of engagement. the cognitive-neurological component of the person has become better understood with the growing body of knowledge in the neurosciences (doubt, ). approaches to address deficits of the cognitive-neurological component focus on perceptual, sensorimotor, executive function and neurodevelopmental skills that use purposeful activities to achieve functional outcomes (bruce & borg, ; dickerson, ; pedretti & early, ; doubt, ). the most recognized approaches and theories include bobath and brunnstrom techniques, sensory integration approach, proprioceptive neuromuscular facilitation; and strategies that have emerged from research in motor control theory and motor learning theory (doubt, ). these approaches focus on the person from the perspective of his or her cognitive, perceptual, and neurological abilities and focus on occupation and related tasks throughout the remediation process (doubt, ). the person-centered framework of occupation situates the issues, problems and successes within the individual. this approach attributes the extent of occupational engagement or challenges to it, to the person. there are advantages and disadvantages that underlie the person- centered framework of occupation. advantages include ease of problem identification related directly to the person, and treatment strategies and outcomes that focus on individual issues. the disadvantages include its inherent narrow focus and lack of inclusion of a range of determinants 	
   	
   of occupational engagement. in the person-centered approach, occupation is described as an individual responsibility, thus relinquishing society’s responsibility and minimizing the role of social, political and economic influences exerted through policy and enacted by law, social norms and social programs. finally, potential social-environmental barriers to occupational engagement such as discrimination are not reflected in this approach. context-centered framework of occupation the context-centered framework of occupation includes cultural and environmental influences. given the breadth of these influences, this framework reflects perspectives from a rich diversity of disciplines (mccoll, ; bonder et al., ). to embrace culturally diverse influences scholars have argued that the construct of occupation needs to be “culturally relative (darnell, ; whiteford, ), …a form of colonization (mckinley, ), … a communitarian necessity (townsend & christiansen, ), … the basis of civil society (thibeault, ) and … an economic concern (wilcock, )” (cited in whiteford, ). culture constitutes people’s identity and influences occupation, health, and well-being (bonder, martin, & miracle, ). coupled with globalization, there are increasing requirements to recognize and understand cultural variations (dickie, ). awareness of cultural influences with respect to the construct of occupation assists in achieving an appreciation and tolerance for occupational variations and choices among people. the environmental influences that affect occupation and its engagement include physical, social, economic and political (law, ). the impact of the environment may constitute the most important determinant that fosters or limits occupational engagement of an individual or a group of individuals (law et al., , p. ). awareness of the environmental influences of occupation by healthcare workers can help them adapt an individual’s environment to improve occupational performance. the environmental influences determining occupational engagement locate “the source of occupational performance problems entirely outside of the person” (law, , p. ). the person-centered and context-centered frameworks of occupation are limited in that they assume a dichotomy of influences that impact occupational engagement. more likely, occupational engagement reflects individual influences interfacing with factors associated with 	
   	
   his or her unique context. an approach that embraces each of these components and offers insights into the optimal interventions to foster engagement and limit deprivation is required. person/context-centered framework of occupation a person/context-centered framework of occupation is reflected in models in occupational science and occupational therapy including the model of human occupation (moho) (kielhofner, ), the occupational adaptation model (schkade & schultz, ), and the framework based on the ecology of human performance (ehp) (dunn, mcclain, brown, & youngstom, ). according to the moho, occupational engagement is a complex interaction between multiple personal and environmental factors and describes occupational behavior, motivation and patterns, occupational dysfunction, occupational engagement, and the effect of environment on occupation (kielhofner & barrett, , p. ). this model describes three subsystems, “the volition subsystem (personal causation, values, and interests), the habituation subsystem (habits and roles), and the performance subsystem (the skills of the mind, brain, and body working together)” and posits that engagement in occupation takes place in the environment that provides information and feedback on these subsystems in order to create an individual’s capability and performance (pedretti & early, , p. ). the occupational adaptation model defined adaptation as “an interaction between the person and occupational environments (consisting of work, play and leisure, and self-maintenance functions) in response to occupational challenges” (schkade & schultz, , p. ). the basis of the ecology of human performance model rests on the “ecology, or the interaction between a person and the context, affects human behavior and task performance” (dunn, mcclain, brown, & youngstom, , p. ). based on this model, changing the person, the context, the task, or the relationship between these influences will cause a change (improvement or deterioration) in performance. our findings showed that the capabilities approach can incorporate the person and context in relation to the multi-dimensional nature of occupation. as discussed earlier, the idea of “capability” refers to “the opportunity to achieve valuable combinations of human functionings, [that is] what a person is able to do or be” (sen, , , , ; nussbaum, , ). similar to capability, occupation can be understood in terms of opportunities to achieve valuable functions, or what a person is able to do or be. 	
   	
   our findings revealed that the chfcs can be considered could be a useful framework for understanding the construct of occupation and the tenets of occupation could be useful in implementing the capabilities approach. accordingly, occupation may be operationalized as the opportunity to achieve or extend these ten capabilities. the implications for framing the capabilities approach to the constructs of occupation are presented on table . . based on our findings, the chfcs encompass both the person and contextual aspects of occupation. these capabilities can be characterized as person-centered and person/context– centered. person-centered capabilities include those capabilities that focus on person-centered aspect of occupation such as life; bodily health; senses, imagination and thought; and, practical reason. person/context-centered capabilities are those capabilities that focus on both person-centered and context-centered aspects of occupation such as bodily integrity; emotions; affiliation; other species; play; and, control over one’s environment. accordingly, occupation can be considered as an opportunity to improve or extend person- centered capabilities. in other words, occupation can be used to achieve the capability of improving qol, having a healthy life expectancy, promoting health and manage lifestyle, accessing an appropriate level of nourishment, employment, and housing, experiencing self- expressive and creative activities, planning one’s life, making good choices, and using the idea of reflection to impact future choices. occupation can be considered an opportunity or a means to achieve or extend person/context- centered capabilities. this includes being able to move freely from place to place as citizens, to be secure against violation, assault, discrimination, and abuses, to express feelings, to have attachments to family and friends, to cope with stress and anxiety, to have meaningful relations and interactions, to improve communication skills, to have access to environments, to develop friendship, social interaction, and participation, to promote relation to animals, plants, and the world of nature, to have empathy for non-human beings, to improve spirituality, to engage in leisure and recreational activities, to choose who’s governing you, to develop making decision skills and speak up for yourself, and to adapt the environment to be as independent as possible. our study showed that through the use of occupation, the tenets of the chfcs can be operationalized. it is also imperative, however, to understand that the chfcs shape occupational life and their deficiency contributes to occupational deprivation. the construct of occupational deprivation has been discussed in the occupational science 	
   	
   literature for two decades. it refers to a state in which people are excluded from opportunities to engage in meaningful and purposeful occupations because of personal, cultural, social and political factors (whiteford, , , ; hocking, ). hocking ( ) asserted that occupational deprivation refers to “inequalities in people’s opportunities to participate in occupations that hold personal, social or cultural meaning” (p. ). according to wilcock ( ), deprivation not only results from personal restrictions, but from environmental social, cultural and political exclusions. within the occupational deprivation discourse, the need for theory development and practice- based research to examine the relevance of these ideas across disciplines is warranted (whiteford, , ). in the context of the capabilities approach, occupational deprivation may be alternatively or reinterpreted as arising from the relationship between a person and his or her environment. this relationship is not only affected by age, gender, and geography and culture, but also by lack of freedom and opportunity. based on our study, occupational deprivation can be conceptualized in terms of “capabilities deprivation”. accordingly, occupational deprivation is not merely failure to achieve basic capabilities that result from personal and environment factors. in the light of the capabilities approach, actual occupational deprivation results from restricted freedoms or opportunities to achieve chfcs. to sum up, application of the capabilities approach to the construct of occupation could assist in developing a framework that supports the inclusion of the person as an occupational being participating in the micro to macro contexts of life. applying the capabilities approach to the construct of occupation recognizes the equality of people in terms of their accessing occupational opportunities. the capabilities approach could provide a means of unifying the existing underlying constructs of occupation and related capabilities that are fundamental to occupational science. occupational opportunities are then basic to the chfcs and essential to informing social organization entrenched in political, legislative, and legal structures in society, globally. . study strengths and limitations the strengths of this study center on its novelty in that it has not been done previously. first this study explained the meaning, relevance and applicability of the chfcs to the contemporary 	
   	
   practices of ots. the findings could enable ots better understand and consider their roles in maximizing the capabilities in a holistic manner, of people with disabilities. also, our findings could be used to extend existing models of occupational therapy and occupational science with attention to overarching constructs of human right and social justice. second, using mixed experimental methods to collect and analyze quantitative and qualitative data in a single study enhances the credibility of the research findings. data triangulation and methods triangulation were used to collect data from two sources, interviews and survey, so that differences among the participants were balanced. also, choosing an exploratory sequential mixed methods design for the study enabled the researcher to explore this new research topic in a novel manner and to determine rich textural meaning among a larger sample. third, selecting a purposeful group of participants in phase one helped to maximize the chance of acquiring a range of perspectives based on the participants’ diverse experiences, educationally and professionally. fourth, using thematic analysis and in vivo coding allowed clear identification of prominent themes, and enabled the researcher to transform the qualitative data into quantitative data. fifth, using a national survey in phase two strengthened the results from phase one and allowed the researcher to understand the ots’ views nationally and benefit from multiple opinions. sixth, selecting fluidsurveys® over other online surveys allowed for open- and closed-ended questionnaire items, and was flexibility, easy to use, and was secure. as well, this survey method enabled the researcher not only to send out personalized email invitations, but also send reminders to participants who failed to complete the survey. seventh, the participants in phase one and in phase two had experience working in diverse settings and areas of practice with various clients groups. the majority had over twenty years of experience as ots. as they had a higher level of skills and knowledge, their views and thoughts were informed from a broader range of factors. and eighth, coherence of study themes was observed between phase one and phase two of the study. in addition to the limitations noted for each phases and the attempts to minimize these ,there were limitations for using a mixed methods design itself. first, this design may be a more complex research design than simply a qualitative or quantitative design, requiring the researcher to have experiences in both methods. second, the mixed methods approach requires not only to engage in qualitative and quantitative research separately, but to combine the results of both phases. sometimes the combining of results was challenging that is the comments of 	
   	
   participants in phase one and the degree of agreement among the respondents in phase two. the identification of these limitations provides support for the credibility and rigor of this study. in our view, the use of mixed methods helped to minimize these limitations and enhanced the quality of the research, and triangulating data from the two research methods and sources helped the researcher present the results more effectively. . implications . . implications for theory and practice in light of the research results and the discussion above, our findings have potential implications for occupational therapy practitioners, educators, and researchers. participants in both phases in this study recognize the importance of chfcs in occupational therapy practice. our findings revealed that the chfcs provide a broad perspective and encompass the range of settings of occupational therapy practice. for many participants in this study, the chfcs encompass a range of occupational therapy practices. for practitioners, this study suggests that ots can improve and enhance the ten chfcs when considering application to their clients. occupational therapists will need to understand these capabilities as “a bare minimum of what respect for human dignity requires”, and consider them as all are important. they “cannot satisfy the need for one of them by giving a larger amount of another one” (nussbaum, , p. ). if ots are educated about the chfcs, they may better help clients to achieve their basic needs and rights while improving their functional capacities. the results of this research can be used to inform client-centered occupational therapy. occupational therapists may use the chfcs to guide occupational therapy assessment, intervention and outcome of client-centered practice. further, they may apply them for practice of human rights and social justice in occupational therapy interventions. finally, they may consider them as framework for health in their practices. with regard to educators, the results of this study identify the knowledge areas used by these participants, thus providing topics for theoretical course on occupational therapy and occupational science, consistent with a client-centered approach. our findings are also consistent with the broad picture and view subsumed in occupational therapy about what constitutes occupation, occupational rights, occupational justice, and occupational deprivation. 	
   	
   for the researchers, the findings of this study expanded our understanding about ots’ views on human rights and social justice issues. there is a call for research to address human rights and social justice in occupational therapy practice (world federation of occupational therapists, ; wilcock, ; galvin, wilding and whiteford, ). this dissertation was conducted in response to the gap identified in the research to advance human rights and social justice, and enhance client-centered practice. our findings showed the chfcs can be considered as a client- centered approach, a human rights model, a framework for health and well-being, and a social justice approach. such a foundation could enable ots to frame the science and practice of occupational therapy more broadly in relation to constructs that have garnered international priority. for those outside the field of occupational therapy, this research provides a new perspective for health professionals in terms of their service delivery, which could help extend the applicability of the capabilities approach. . . implication for policy makers our emerging understanding of the chfcs in occupational therapy practice informed by this study has implications for organizations with respect to health policy and may assist planners in their decision making. policy makers and health professionals may benefit from an understanding of the chfcs in order to develop and provide the services that best promote clients’ rights and needs. provincial and national associations also have a role to play in advocating for “individual care”, raising awareness of the important contribution of occupational therapy in promoting the clients’ chfcs. although ots can develop many interventions to increase their clients’ chfcs and provide opportunity for the clients to achieve what they want to do, there are barriers in occupational therapy services to including the chfcs across settings. these include consumer expectations, ots’ workloads, and lack of guidelines about their integration into and use in practice and other domains of the profession. participants frequently made reference to barriers, e.g., workload issues. for example participant mentioned that although improving the bodily health capability is important to ots, managing time and workload priorities may compete with this goal. “…but it’s so very difficult, just because the workload is high everywhere” (participant , p. ). or, participant mentioned workload issues may contribute to ots paying less attention to the play capability: “in adults, we often don’t 	
   	
   have time for it, just that things are so busy and there are so many people to see” (p. ). finally, the findings of this research support the need for change in health care policy to allow ots to facilitate these capabilities that are fundamental to social justice and human rights, as well as being common to many of the aims of occupational therapy practice. . . implication for further research this study has highlighted the importance of considering chfcs in the design, planning and delivery of occupational therapy services. although this study established that the chfcs are fundamentally aligned with the role of ots, how they may be translated into basic assessment and intervention warrants development. while this study purposely did not seek analysis of the skills and knowledge necessary for integrating the premise and values of the chfcs into occupational therapy practice, the findings do offer some insight. occupational therapy clinical practice guidelines need to be operationalized across settings and areas of practice and client groups. for example, participant said that “i work with children, and so i would have to reframe it towards a model with kids and so i think some of these aspects perhaps might hold a bit more weight for adults, but i think as an expression of a family value perhaps some of the more adult, because we work with the family and the child, not just the child.” (p. ) or, participant asserted, “in mental health a lot of these things i think are very relevant, as i am saying, it might be important also to talk to people who are working in physical rehab, because in mental health, this is very much a big part of what we’re doing.” (p. ). in addition, future research needs to explore chfcs from the points of view of clients and their families. research such as participatory action research need to be done to create new forms of knowledge through a range of understandings and experiences of those involved in various parts of the research process, and combining ‘research, education, and action’ to empower people with disabilities (de koning & martin, ; kemmis & mctaggart, ; liamputtong & ezzy, ). research is also needed to elucidate the degree to which the values embedded within the chfcs are inherent within the theory and practice of occupational science and occupational therapy. such research would help establish how the capabilities approach might extend the values and tenets of existing models of occupational therapy and occupational science with 	
   	
   attention to human right and social justice. . further insights this study provides insights in terms of what the basic capabilities are and how ots can enhance their clients’ capabilities. it provides a new conceptual framework for practitioners and researchers to pay more attention to their clients’ urgent needs and rights, rather than simply focusing on their medical ones. while similarities are seen between nussbaum’s definitions of the chfcs and the participants’ understandings, there are some differences. first, ots not only understood chfcs as basic human needs and rights, but as basic health needs. this study shows that the concept of health is central to ots’ perspectives. second, although “practical reason” and “affiliation” capabilities was highlighted in nussbaum as key capabilities, our participants highlighted “sense, imagination, and thought”, “emotions”, and “play” capabilities. this study also provides insights in terms of the applicability of chfcs in both occupational therapy theory and practice. also, the role of ots in enhancing these capabilities through: building basic skills, and developing social skills; helping clients identify their interests and needs; advocating for their clients, and empowering them; assisting clients access resources; giving clients necessary tools; providing educational and supportive strategies; and, identifying barriers, and adapting their environments finally, while this study provides insights into the relevance of the chfcs to occupational therapy practice, these insights could be further examined in terms of how can be these capabilities assessed? or, what are the best model for practice to address these capabilities? . concluding thoughts this study contributes to the literature in that an exploration of nussbaum’s capabilities approach has helped explain the meaning, relevance and applicability of the chfcs to the contemporary practices of ots; establish the perceived importance of expanding the basic capabilities of people with disabilities for promoting their basic rights; constitute a basis for debate and discussion within the occupationally-related disciplines and health professions; and contribute to the advancement of occupational therapy and occupational science models with the potential for enriching them. the findings will help ots better understand and consider their 	
   	
   roles in promoting the capabilities of people with disabilities by providing an overarching framework. according to some participants, ots have a broad professional role and contribute to many health services areas. the chfcs may be a useful tool to augment occupational therapy outcomes. i think ots have a much broader role and could contribute in a lot of areas, but because they haven’t traditionally been in those areas, it’s difficult to make in roles, and unless there are models for them to consider, it’s difficult for them to conceptualize what it is that they could contribute (participant , p. ). finally, considering the applicability of the chfcs to their practices, ots may discover they have an even greater professional responsibility to their clients than they presently believe they do. [chfcs] are relevant to anybody who’s providing care for people with disabilities, and ots being one of those people, certainly have a responsibility to provide services for people in these areas, if people are to have a good life (participant , p. ). 	
   	
   . table table . central human functional capabilities: determinants and implications in relation to occupation 	
   	
   central human functional capabilities determinants implication in relation to occupation life biomedical- physical opportunity, through occupation, to extend capability of living a normal life expectancy, and improving quality of life. bodily health biomedical- physical opportunity to engage in occupational possibilities to enhance health, to manage lifestyle, to access to appropriate level of housing, employment, and feeding and nourishment. bodily integrity biomedical- physical opportunity to achieve capability and occupational justice of being able to access the environments, and to be consider as active members of society. senses, imagination, and thought emotional- psychological, spiritual, and cognitive- neurological opportunity, though the use of occupation, to achieve capability of being able to experience self-expressive and creative activities. emotions emotional- psychological, cultural, and environmental opportunity to achieve capability of being able to express the feelings, to have attachments to family, and friends, to cope with stress and anxiety, to have meaningful relations and interactions, and to improve communication skills through, in and for meaningful occupational engagement. practical reason emotional- psychological, spiritual, and cognitive- neurological opportunity to plan for one’s own life and to make good choices related to meaningful and purposeful occupation. affiliation cultural, environmental opportunity to achieve capability of being able for friendship, social relations, and empathy, compassion for situations, and social interaction and participation. opportunity to engage in work occupations with people in a mutually respectful way. other species spiritual, cultural and environmental opportunity to promote relation to animals, plants, and the world of nature, to have empathy for non-human beings, to improve spirituality, and to perform tasks in living and working environments. play emotional- psychological, cultural, and environmental emotional- psychological, cultural, and environmental opportunity to achieve capability of being able to engage in leisure and recreational activities as part of one’s occupational life. control over one’s environment cognitive- neurological, cultural, and environmental opportunity to achieve capability of being able to choose who’s governing you, to speak up for yourself, to adapt the environment to be as independent as possible for participation in occupations. 	
   	
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   appendices appendix a: description of the occupational therapy profession for clarification in this thesis, the term occupational therapy and occupational therapist and related scope of practice are based on established descriptions and definitions including the world federation of occupational therapy (wfot) and the canadian association of occupational therapists (caot). the wfot states that “occupational therapy is a client-centered health profession concerned with promoting health and well being through occupation. the primary goal of occupational therapy is to enable people to participate in the activities of everyday life. occupational therapists achieve this outcome by working with people and communities to enhance their ability to engage in the occupations they want to, need to, or are expected to do, or by modifying the occupation or the environment to better support their occupational engagement. occupational therapists work with all age groups and in a wide range of physical and psychosocial areas. places of employment may include hospitals, clinics, day and rehabilitation centers, home care programmes, special schools, industry and private enterprise. many occupational therapists work in private practice and as educators and consultants” (wfot, ). occupational therapy as defined by the caot is “the art and science of enabling engagement in everyday living, through occupation; of enabling people to perform the occupations that foster health and well-being; and of enabling a just and inclusive society so that all people may participate to their potential in the daily occupations of life” (townsend& polatajko, , p. ). specifically, the caot states that “occupational therapists use a systematic approach based on evidence and professional reasoning to enable individuals, groups and communities to develop the means and opportunities to identify, engage in and improve their function in the occupations of life. the process involves assessment, intervention and evaluation of the client related to occupational performance in self-care, work, study, volunteerism and leisure. occupational therapists may assume different roles such as advising on health risks in the workplace, safe driving for older adults, and programs to promote mental health for youth. occupational therapists also perform functions as manager, researcher, program developer or educator in addition to the direct delivery of professional services. occupational therapists are generally employed in community agencies, health care organizations such as hospitals, chronic care facilities, rehabilitation centres and clinics, schools; social agencies industry or are self-employed. some occupational therapists specialize in working with a specific age group or disability such as arthritis, developmental coordination disorder, mental illness, or spinal cord injury. occupational therapists are university-trained, regulated health professionals whose unique training enables them to understand not only the medical and physical limitations of a disability or injury, but also the psycho-social factors that affect an individual's ability to function independently. their approach is based on research that proves that an individual's ability to engage in occupation increases health and well-being” (caot, ). references canadian association of occupational therapists. ( ). profile of occupational therapy practice in canada. ottawa, on: caot. canadian association of occupational therapists (caot). ( ). occupational therapy – definition. retrieved july , from, http://www.caot.ca/default.asp?pageid= world federation of occupational therapists (wfot). ( ). definition of occupational therapy. retrieved july , from, http://www.wfot.org/aboutus/aboutoccupationaltherapy/definitionofoccupationaltherapy.aspx 	
   	
   appendix b: interview guide below are some of the main questions i would like to explore with you during our interview. since this is simply a guide, additional questions or issues may arise during the interview, so if you have other comments, i would like to hear them. please read through these questions before the interview, to allow you some time for reflection on this topic. because the relevance of the capabilities approach as a practice approach within the occupational therapy profession has not been previously addressed, there is no right and wrong answer. i am most interested in learning about your thoughts and views about the relevance and applicability of this approach in occupational therapy practice. i thank you in advance for sharing them your ideas and perspectives and look forward to speaking with you. part a- aim: to obtain demographic and clinical information ) tell me generally about your background? probes: • educational background • clients’ group, age • professional experience • years experiences • role part b- aim: to obtain a general sense about the applicability of the capabilities approach to occupational therapy ) have you had hear about the capabilities approach before? is it the first time? is this new terminology for you? ) what is your general sense about the applicability of the capabilities approach to occupational therapy, how it may be related to occupational therapy probes: • current occupational therapy philosophy • occupational therapy practice method • occupational therapy approach part c- aim: to explore the relevance of the ten capabilities of the capabilities approach within the professions of occupational therapy for each capability (please see appendix): ) what is your understanding of this capability based on this description? ) is this relevant to your practice? if yes, how? if not, why? ) is this relevant to total profession? ) can you give me an example? part d- closing these are all of the questions. ) do you have anything to add? ) is there anything i should have asked? ) how did the interview feel for you? 	
   	
   appendix c: consent form t h e u n i v e r s i t y o f b r i t i s h c o l u m b i a subject information and consent form-phase study title: disability and human rights: exploration of the capabilities approach in contemporary occupational therapy principal investigator: elizabeth dean, phd, pt, department of physical therapy university of british columbia, canada co-investigators: susan forwell, phd, ot, department of occupational science and occupational therapy, ubc shafik dharamsi, phd, department of family practice, ubc seyedeh tahmineh mousavi, phd student, university of british columbia . introduction you are being invited to take part in this research study because we are interested in your understanding and opinions about the relevance of nussbaum’s capabilities approach based on human rights model to your professional practice (see appendix). . your participation is voluntary your participation is entirely voluntary, so it is up to you to decide whether or not to take part in this study. before you decide, it is important for you to understand what the research involves. this consent form will tell you about the study, why the research is being done. if you wish to participate, you will be asked to sign this form. if you do not wish to participate, you do not have to provide any reason for your decision not to participate. please take time to read the following information carefully before you decide. . who is conducting the study? this is a study which is part of a research degree for ms. seyedeh tahmineh mousavi who is a phd student at the university of british columbia. . background the capabilities approach is an approach related to human rights which provides a basis for conceptualizing and framing the rights of people with disabilities. we are interested in understanding your perspectives about the relevance of nussbaum’s central human functional capabilities to your professional practice (see appendix). . what is the purpose of the study? the purpose of this study is to explore your understanding and opinions about nussbaum’s central human capabilities so that we can establish whether the capabilities approach could be useful as a practice approach within the occupational therapy profession. . who can participate in the study? occupational therapist practitioners, educators, faculty members, and administrators in british columbia. department of physical therapy faculty of medicine room , friedman building wesbrook mall vancouver, vancouver, british columbia v t z phone: fax: web: www.physicaltherapy.med.ubc.ca 	
   	
   . who should not participate in the study? our study is restricted to occupational therapist practitioners, educators, faculty members and administrators in british columbia. . what does the study involve? overview of the study the study involves your volunteering to be interviewed by a researcher. you will be asked to participated in an one-hour semi-structured interview related to your understanding of the relevance of the ten key elements of the capabilities approach within the profession of occupational therapy. if you sign the consent form to participate in the study, please return it in the pre-stamped self-addressed envelope. the principal investigator will contact you to arrange an interview time that is suitable for you. if you decide to join this study: specific procedures if you agree to take part in this study, one individual interview of approximately to minutes will be conducted by seyedeh tahmineh mousavi. during the interview you will be asked about your understanding of the ten key elements of the capabilities approach (see appendix). specifically, you will be asked about the relevance of these capabilities within the profession of occupational therapy. the interview will take place in person at a location that is convenient for you and at a mutually agreeable pre-scheduled time outside work hours. with your permission, the interview will be audiotape recorded and later transcribed. you can ask for the tape recorder to be turned off at any time, or let the interviewer know that you do not wish to be recorded. . what are my responsibilities? you have no responsibilities other than answering the questions within your level of comfort. . what are the possible harms and side effects of participating? to the best of our knowledge, there are no foreseeable risks from participating in this study. . what are the benefits of participating in this study? while you may not directly benefit from taking part in this study, discussing your opinions and perceptions will allow you to reflect on your practice. we hope that the responses received from you can be used in the future to benefit people with disabilities. . what happens if i decide to withdraw my consent to participate? your participation in this research is entirely voluntary. you may withdraw from this study at any time. if you choose to enter the study and then decide to withdraw at a later time, all data collected about you during your enrolment in the study will not be retained for analysis. . what happens if something goes wrong? this is a semi-structured interview so we do not anticipate any problems. to the best of our knowledge, there are no foreseeable risks from participating in this study. it is possible that some topics discussed may raise some issues that you are uncomfortable with but you need only answer questions or express your views when you wish to do so. . what will the study cost me? there is no payment related to your participation in this research. any parking expenses incurred while attending the interview will be reimbursed directly by the researcher. . will my taking part in this study be kept confidential? confidentiality will be respected. with your permission, the interviews will be audio-tape recorded and later transcribed. you will be identified with a pseudonym. all documents will identified only by a code number. any data records that are kept on a computer hard disk will be securely protected through a confidential password system. the only people who will have access to the tapes and transcripts will be the research team and the transcriptionist. to ensure confidentiality, the transcriber will be asked to also sign a confidentiality agreement. although we may use some direct quotations from the interview in research papers and presentations, you will be given a pseudonym, and identifying information will never be used. after a -year period, data related to the study will be destroyed. 	
   	
   . who do i contact if i have questions about the study during my participation? if you have any questions or desire further information about this study before or during participation, you can contact …or …at… . who do i contact if i have any questions or concerns about my rights as a subject during the study? if you have any concerns about your rights as a research subject and/or your experiences while participating in this study, contact the research subject information line in the university of british columbia office of research services by email at…or by phone at….. . after the study is finished we plan to publish the results. please indicate if you would like a summary of our final results, and how we might best contact you with these: i would like a summary of the results thank you, no. contact information: please use the following contact information: email: mail address: ____________________________________________________________________________________________ ________________________________________________________________ . subject consent to participate check list: • i have read and understood the subject information and consent form. • i have had sufficient time to consider the information provided and to ask for advice if necessary. • i have had the opportunity to ask questions and have had satisfactory responses to my questions. • i understand that all of the information collected will be kept confidential and that the result will only be used for scientific objectives. • i understand that my participation in this study is voluntary and that i am completely free to refuse to participate or to withdraw from this study at any time without changing in any way the quality of care that i receive. • i understand that i am not waiving any of my legal rights as a result of signing this consent form. • i understand that there is no guarantee that this study will provide any benefits to me (if applicable). • i have read this form and i freely consent to participate in this study. • i have been told that i will receive a dated and signed copy of this form. signatures printed name of participant signature date printed name of principal investigator/ designated representative signature date 	
   	
   appendix d: analytic memo revised date: february , february , critical question: “which coding methods are appropriate for my study?” reading “the coding manual for qualitative researchers” book by johnny saldana, gives me opportunity for reflection to answer this question. but before answer it, first, i have to ask myself “is the coding methods harmonizing with my study conceptual framework.” the purpose of my study is to explore the views of occupational therapists about the elements of central human capabilities. this study approaches from the interpretive paradigm, which focuses on the understanding and perceptions of the participants (creswell, ; grbich, ). this paradigm enables me to understand the existence of multiple realties and views. so i use descriptive codes to describe participants’ views in a word or short phrase. the second question is “is the coding method relating or addressing my research question? my research question is “what are occupational therapists’ understanding of “central human functional capabilities”. i think i need to employ more than one method to answer these questions. therefore, the first cycle coding of my study is as follow: (saldana, j., the coding manual for qualitative researchers, pp. - ) -attribute coding is an appropriate for coding essential information about the demographic characteristic of my participants. example: age..gender ( male= , female= ).. -magnitude coding helps me to use some information in form of y=yes/ n=no / m=maybe/ ?= unknown or unclear/ pos= positive/ neg=negative/ neu= nutral/ mix=mixed -structural coding helps me to frame my data. for example one of my interview question is what’s your understanding about “life capability”, so structural code could be life capability. as well, this coding helps me to determine” frequencies on the basis of the number of individual participants who mention particular theme.” (p. ) -descriptive codes , i use this coding as sub- coding to summarize participants’ views in a word or short phrase- for example: participate m : “..occupational therapists understand that to promote people’s quality of life”. so “quality of life” can be considered a sub-coding under structural coding “life capability”. - in vivo coding refers to a word or short phrase from the actual language. using this technique “help us to preserve participants’ meanings of their views and actions in the coding itself” (charmaz, , p. ). in vivo coding is “safe and secure coding” and enhances my understanding of participants’ perspectives. - process coding. i use it for ongoing action/interaction..response to situations, or problems. (corbin & strauss, , pp. - ). for examples: participant “i’m not sure about political participation, but area to participate in their decisions making, treatment decision making.” making decision participant ” it is important to listen to clients.” lisening to clients - emotion coding. i use it to label the participants’ emotions and experiences. for examples: participant : “…i don’t know… “ uncertainty participant : “ ..ot is the best job in the world” exciting - values coding . i use it to reflect my participant’s value, attitude, and beliefs. - versus coding. i use it as contrast ideas, for example: participant : “ it relates to occupational therapy not physical therapy” ot vs. pt 	
   	
   - evaluation coding . i use it to understand whether the participants make a positive (+) or negative (-) comment, recommendation (rec) tag. for examples: -positive comment participant : “..i think the framework itself can push occupational therapy a little bit further” + ca: can be “helpful” -recommendation participant : “.. but there is not real guide to action. how do we apply it to services” rec: guide to action i use these methods for my first cycle coding to in-depth understanding of the participants’ views. further, these coding methods offer me the opportunity for reflection on emerging themes. march , second cycle coding: in my study, the second cycle coding is an attempt “to grasp basic themes or issues in the data by absorbing them as a whole rather than by analyzing them line by line.” the purpose of my second cycle coding is to develop a coherent synthesis of the data amount. so i have to answer to this question “is the coding methods leading i toward a new discoveries, insights, and connections about my participants’ thoughts”. as my data analysis is thematic analysis, i found a valuable resource titled “transforming qualitative information: thematic analysis and code development by boyatzis, sage publications, ” to help me inductively develop themes. based on boyatzis’ book, my second cycle coding includes: stage i: sampling and design issues: i select two samples of three occupational therapists work with mental health illnesses and occupational therapists work in pediatric. i use a compare-and-contrast process to extract observable differences between or among the samples. stage ii: developing themes: i use the five steps to inductively develop themes: (a) reducing the raw information, (b) identifying themes within subsamples, (c) comparing themes across subsamples, (d) creating theme, and (e) determining the reliability of themes. a: reducing the raw information: i reduce the raw information to a manageable size. major outlines are selected based on the central human capabilities headings. b: identifying theme : i carefully read the first cycle coding to identify emerging themes. c: comparing theme across each sample: first, i examine the lists of themes and looks for themes from each list that may be related. they may appear as opposites or similar theme. second, i begin to write and rewrite these potential differentiating themes. then i return to each original transcript and read each carefully to see if each transcript include theme, making note of it in margin for later consideration as to its appropriateness. d: creating themes: the themes showing a distinction between occupational therapists in mental health (interviews , , ) and occupational therapists in pediatric (interviews , , ) are then rewritten for maximum clarity. i will ask myself such questions as “can i read any of the six samples and clearly see that this theme is present or absent? is the theme presented with the fewest number of words or concepts possible? have i reduced the number of theme as much as possible without losing meaning or confusing phenomena? if no clear differentiation appears in the responses to each question, it will be dropped from further analysis. i will present the themes with: a label, definition, description of indicators, description of exclusions, and examples. e: determining the reliability of themes: the final step is to determine reliability as a percentage-based agreement of the themes with the members of my supervisory committee. 	
   	
   appendix e: the thematic map for the emotions capability emotions	
  capability	
  	
  	
   general	
  understanding	
   basic	
  needs	
  and	
  rights	
   social	
  relations	
  	
   	
   relevance	
  to	
   occupational	
  therapy	
  	
   people	
  with	
  mental	
   health	
  issues	
   children	
  with	
   disabilities	
  	
   all	
  those	
  seen	
  by	
   occupational	
  therapists	
  	
   helping	
  people	
  manage	
   their	
  emotions	
   teaching	
  anxiety	
   management	
  skills	
   	
   	
   appendix f: example of how themes within subsamples were identified occupational therapists’ general views of central human functional capabilities (chfcs) ots in mental health ots in pediatrics participant participant participant participant participant participant ) chfcs reflect some occupational therapy approaches such as: i-maslow's hierarchy of needs ii-human occupational model iii-canadian model of occupational performance iv-icf v-recovery philosophy ) familiar to ots ) play is a common example in both chfcs and ot philosophy ) relevant to ot as ots try to: i-understand clients’ interests ii-facilitate what they want to do ) not new concepts to ots as we currently work on them in mental health )chfcs framework is interesting ) chfcs is important ) do not have a guide for action ) chfcs more make sense in advocacy and community practice ) concern about how apply chfcs to ots’ services ) chfcs are important to ot in mental health ) chfcs looks more academic vs clinicians ) importance of life capability ) chfcs model is applicable to ot as: i- a framework for wellness ii-a social justice model iii-relates to copm iv-as aspects of the health determination v-as the context of environment vi-as basic needs and freedoms vii-very related to recovery (approach) viii-related in mental health ix- chfcs are kind of rights of people ) chfcs has a lot of potentially for ot i- propel ot profession forward ) more applicable for outpatients clients rather than acute clients ) function is the main aim between ot approaches and models, and chfcs ) chfcs gives you a broad perspective chfcs bear more responsibility ) chfcs are relevant ) chfcs are helpful ) chfcs looks like: i- a human rights theory ii-basic approach iii-the person environment occupation model iv-the canadian occupational performance model v-models in mental health vi-psychological models vii-basic human rights model viii-the person environment occupation model ix-a basic theory of human function and interaction ) uncertainty about how chfcs might apply to practice ) chfcs are more related in mental health ) chfcs fits well with ot i-having an individual’s human rights fits well with ot ) familiar to ots as: i- ot is a client centered practice ii-ot is function- based activities ) chfcs is interesting ) chfcs is relevant to ot ) chfcs more relevant to adult i-more adopt with family values ii- the importance of chfcs for caregivers ) chfcs are more related to ot in mental health ) chfcs are as basic needs ) chfcs considers actual health ) ots try to compensate for loss of function ) bodily health and bodily integrity relates to ot ) it is an interesting framework ) highlighting play as a key factor is very important i-play is much more complex than the way analysis in canadian model of occupational performance ) chfcs are important to ot in mental health )chfcs are as basic needs 	
   	
   appendix g: online survey exploration of the capabilities approach in contemporary occupational therapy 	
   thank you for taking the time to complete this survey which should take about minutes to complete. its purpose is to understand the applicability of a human rights perspective, specifically nussbaum's capabilities approach, to the practice of occupational therapy. the survey is based on preliminary work with occupational therapists and the issues they identified regarding the ten "central human functional capabilities" described in the capabilities approach. we very much appreciate your time and attention to completing this survey and contributing to this aspect of our practice. your responses will help us evaluate the relevance of the capabilities approach to the practice of occupational therapy, and its potential applicability. thank you. 	
   section : views and opinions 	
   please indicate the degree to which you agree or disagree with the statements within the ten key elements of the capabilities approach as related to the profession of occupational therapy and its current practices. i. life capability: "being able to live to the end of a human life of normal length; not dying prematurely, or before one’s life is so reduced as to be not worth living." based on this definition, indicate your views and opinions in relation to the following items... - life capability is about... 	
   strongly disagree disagree not sure agree strongly agree basic human rights quality of life longevity other, please specify... ______________________ - life capability is relevant to occupational therapy practice as related to... 	
   strongly disagree disagree not sure agree strongly agree quality of life working with people with mental health issues working with seniors acute care palliative care and end of life care other, please specify... ______________________ comments, thoughts: 	
   	
   ii. bodily health capability: "being able to have good health, including reproductive health; to be adequately nourished; to have adequate shelter." based on this definition, indicate your views and opinions in relation to the following items... - bodily health capability is... strongly disagree disagree not sure agree strongly agree a basic human right about health promotion interconnected with the life capability other, please specify... ______________________ - bodily health capability is relevant to occupational therapy practice as related to... 	
   strongly disagree disagree not sure agree strongly agree promoting health and preventing diseases feeding and/or eating addressing physical health for those with mental illness advocating for adequate shelter and basic nutrition addressing reproductive health other, please specify... ______________________ comments, thoughts: iii. bodily integrity capability: "being able to move freely from place to place; having one’s bodily boundaries treated as sovereign, i.e. being able to be secure against assault, including sexual assault, child sexual abuse, and domestic violence; having opportunities for sexual satisfaction and for choice in matters of reproduction." based on this definition, indicate your views and opinions in relation to the following items... - bodily integrity capability is about... 	
   strongly disagree disagree not sure agree strongly agree basic human rights other, please specify... ______________________ - bodily integrity capability is relevant to occupational therapy practice as related to… strongly disagree disagree not sure agree strongly agree 	
   	
   a client-centered approach a social justice perspective an advocacy perspective providing (emotional) trauma- informed care addressing mobility issues referring clients to resources other, please specify... ______________________ comments, thoughts: iv. senses, imagination, and thought capability: "being able to use the senses, to imagine, think, and reason – and to do these things in a “truly human” way, a way informed and cultivated by an adequate education, including, but by no means limited to, literacy and basic mathematical and scientific training. being able to use imagination and thought in connection with experiencing and producing self-expressive works and events of one’s own choice, religious, literary, musical, and so forth. being able to use one’s mind in ways protected by guarantees of freedom of expression with respect to both political and artistic speech, and freedom of religious exercise. being able to search for the ultimate meaning of life in one’s own way. being able to have pleasurable experiences, and to avoid non-necessary pain." based on this definition, indicate your views and opinions in relation to the following items.. - senses, imagination, and thought capability is about... 	
   strongly disagree disagree not sure agree strongly agree expressing oneself in various ways other, please specify... ______________________ - senses, imagination, and thought capability is relevant to occupational therapy practice in relation to... 	
   strongly disagree disagree not sure agree strongly agree people with mental health issues children with disabilities self-expression other, please specify... ______________________ comments, thoughts: 	
   	
   v. emotions capability: "being able to have attachments to things and people outside ourselves; to love those who love and care for us, to grieve at their absence; in general, to love, to grieve, to experience longing, gratitude, and justified anger. not having one’s emotional development blighted by overwhelming fear and anxiety, or by traumatic events of abuse or neglect." based on this definition, indicate your views and opinions in relation to the following items... - emotions capability is about... 	
   strongly disagree disagree not sure agree strongly agree basic needs and rights other, please specify... ______________________ - emotions capability is relevant to occupational therapy practice with respect to the following populations... strongly disagree disagree not sure agree strongly agree people with mental health issues children with disabilities all those seen by occupational therapists other, please specify... ______________________ - emotions capability is relevant to occupational therapy practice in relation to... 	
   strongly disagree disagree not sure agree strongly agree finding support systems helping people manage their emotions teaching anxiety management skills other, please specify... ______________________ comments, thoughts: vi. practical reason capability: "being able to form a conception of the good and to engage in critical reflection about the planning of one’s life." based on this definition, indicate your views and opinions in relation to the following items... - practical reason capability is about… 	
   strongly disagree disagree not sure agree strongly agree making personal decisions other, please specify... ______________________ 	
   	
   - practical reason capability is relevant to occupational therapy practice… 	
   strongly disagree disagree not sure agree strongly agree from a client-centered perspective helping clients to make personal decisions providing educational and supportive strategies for caregivers other, please specify... ______________________ comments, thoughts: vii. affiliation capability: "a. being able to live with and toward others, to recognize and show concern for other human beings, to engage in various forms of social interaction; to be able to imagine the situation of another and to have compassion for that situation: to have the capability for both justice and friendship. b. having the social bases of self-respect and non-humiliation; being able to be treated as a dignified being whose worth is equal to that of others. this entails, at a minimum, protections against discrimination on the basis of race, sex, sexual orientation, religion, caste, ethnicity, or national origin. in work, being able to work as a human being, exercising practical reason and entering into meaningful relationships of mutual recognition with other workers." based on this definition, indicate your views and opinions in relation to the following items... - affiliation capability is about... 	
   strongly disagree disagree not sure agree strongly agree basic needs and rights social relations other, please specify... ______________________ - affiliation capability is relevant to occupational therapy practice with respect to... 	
   strongly disagree disagree not sure agree strongly agree helping clients to identify their interests developing friendships and social network advocating for their clients developing social skills working with clients with mental illness other, please specify... ______________________ 	
   	
   comments, thoughts: viii. other species capability: "being able to live with concern for and in relation to animals, plants, and the world of nature." based on this definition, indicate your views and opinions in relation to the following items... - other species capability is about... strongly disagree disagree not sure agree strongly agree people's relationship with the environment other, please specify... ______________________ - other species capability is relevant to occupational therapy practice... strongly disagree disagree not sure agree strongly agree because relationship with animals affects health because relationship with nature affects health from a spirituality perspective from a client-centered perspective from an environmental perspective not the main focus of occupational therapy practice other, please specify... ______________________ comments, thoughts: ix. play capability: "being able to laugh, to play, to enjoy recreational activities." based on this definition, indicate your views and opinions in relation to the following items... - play capability... 	
   strongly disagree disagree not sure agree strongly agree contributes to human happiness preserves quality of life achieves a work/life balance other, please specify... ______________________ 	
   	
   - play capability is relevant to occupational therapy practice with respect to... 	
   strongly disagree disagree not sure agree strongly agree serving as a primary therapeutic approach in pediatric practice serving as a therapeutic approach when working with persons with mental health issues its importance for everyone other, please specify... ______________________ comments, thoughts: x. control over one’s environment capability: "political. being to participate effectively in political choices that govern one’s life; having the right political participation, protection of free speech and association. material. being able to hold property (both land and movable goods), and having property rights on an equal basis with others; having the right to seek employment on an equal basis with others, having the freedom from unwarranted search and seizure. in work, being able to work as a human being, exercising practical reason and entering into meaningful relationships of mutual recognition with other workers." based on this definition, indicate your views and opinions in relation to the following items with respect to... - control over one’s environment capability is... 	
   strongly disagree disagree not sure agree strongly agree about decision making a basic human right about political opinions other, please specify... ______________________ - control over one’s environment capability is relevant to occupational therapy practice with respect to... strongly disagree disagree not sure agree strongly agree building skills developing decision-making helping clients gain and retain employment advocating for their clients other, please specify... ______________________ 	
   	
   comments, thoughts: your overall views of the central human functional capabilities ( . life; . bodily health; . bodily integrity; . senses, imagination, thoughts; . emotions; . practical reason; . affiliation; . other species; . play; . control over one's environment.) - which of the following reflect your general views about the central human functional capabilities? 	
   strongly disagree disagree not sure agree strongly agree constitutes a new approach encompasses a range of occupational therapy practices is more theoretical than practical is more related to mental health practice the construct of function is common to the "central human functional capabilities" as well as occupational therapy models they overlap each other other, please specify... ______________________ - central human functional capabilities is consistent with… 	
   strongly disagree disagree not sure agree strongly agree the canadian model of occupational performance the human occupational model the person environment occupation model a client-centered approach a recovery philosophy a framework for health and wellness a human rights model maslow’s hierarchy of needs a social justice model an advocacy approach other, please specify... ______________________ 	
   	
   comments, thoughts: section : demographic information this section gathers general demographic information about your background and education. - sex 	
   female male - qualifying certification in occupational therapy 	
   diploma baccalaureate master’s professional master's doctorate - highest degree achieved 	
   diploma baccalaureate master’s professional master's doctorate phd - place of graduation 	
   canadian-educated internationally-educated - where do you work? please check one: 	
   alberta british columbia manitoba new brunswick 	
   	
   newfoundland labrador nova scotia ontario prince edward island quebec saskatchewan northwest territories nunavut yukon other - how many years have you been an occupational therapist? - years - years - years - years - years - years more than years - please indicate your type of employer (select all that apply) general hospital rehabilitation hospital/facility mental health hospital/facility residential care facility assisted living residence community health center group professional practice/clinic solo professional practice/business post-secondary educational institution 	
   	
   school or school board association/government/para-governmental industry, manufacturing and commercial consulative other, please specify... ______________________ - please indicate your area(s) of practice (select all that apply) mental health neurorehabilitation musculoskeletal/orthopedic cardiovascular and respiratory system general physical health vocational rehabilitation palliative care health promotion and wellness other areas of direct service service administration client service management medical/legal-related client service management teaching research other, please specify... ______________________ - please indicate your position (select all that apply) manager professional leader/coordinator direct service provider educator researcher other, please specify... ______________________ 	
   	
   - please indicate the clients with whom you work children and adolescents ( - years) adult ( - years) seniors ( and older) mixed none thank you for completing our survey! 	
   please indicate if you would like a summary of the results yes no contact information: please use the following contact information: email/ mail address: 	
   	
   	
   appendix h: cover email dear..., we are conducting a study that is looking at a framework regarding the human rights of persons with disabilities. an approach to conceptualizing a human rights perspective is called the capabilities approach. described within the capabilities approach are “central human functional capabilities”. these are: . life: capability of physical survival . bodily health: capability to have good health . bodily integrity: capability to move freely from place to place . senses, imagination, and thoughts: capability to use the senses, to imagine, to think . emotions: capability to have attachments to things and persons outside ourselves . practical reason: capability to engage in critical reflection about the planning of one's life . affiliation: capability to live with and show concern for others . other species: capability to live with, and have concern and connection for the world of nature and other species . play: capability for being able to laugh, to play, and to enjoy leisure activities . control over one's environment: capability to exercise control over political environment and materials including land and goods ownership we are most interested in your opinions and views about the applicability of these central human functional capabilities as they might be related to occupational therapy. we invite you to complete the survey attached which will require between - minutes of your time. this survey is based on preliminary work with occupational therapists and the themes and issues they identified regarding these central human functional capabilities. we appreciate the demands on your time, and your input is most important to the success of this work. in exchange, you will be eligible for a draw for a $ gift certificate. please find the link below. if you have any difficulty in opening it, please let us know at…anytime. by clicking on the link below, i acknowledge i have read and fully understood the information above, and that i agree to participate in this survey. please click on the link below to access the survey. http://fluidsurveys.com/surveys/tahereh/disability-and-human-rights-ii/ tahmineh mousavi, phd (candidate), bsc (ot), university of british columbia (ubc) dr. elizabeth dean, department of physical therapy, ubc dr. susan forwell, department of occupational science and occupational therapy, ubc dr. shafik dharamsi, department of family practice, ubc 	
   	
   appendix i: participants’ (n= ) written quotes about life capability “occupational therapists’ understandings of the life capability” . unable to answer due to lack of clarity around what normal is and lack of clarity around what would make life not worth living . ot is about quality of life in all aspects where function, independence and enjoyment has been compromised. it is interesting that mental health is at the top of the list but given our current practices, we often don't specifically address the mental health quality of life issues when working outside of a mental health service, however we know that mental health impacts on physical illness and recovery. . all individuals should be entitled to the highest level of care in order to achieve the highest quality of life possible regardless of all the criteria identified in the charter of human rights e.g. age, gender, illness/injury, etc. . who determines when one's life is reduced to the point of not worth living and when? that point is of concern as it makes one think of the euthanasia argument. . children with chronic health conditions such as cerebral palsy and spina bifida often live shortened lives. life capability is extremely relevant for this population. . i'm curious about the definition for...who judges "normal length", "prematurely", and "not worth living"? . never heard of the term life capability prior to this survey . i am new to this model but it seems to me, according to the definition, that it has little to do with ot which is more about quality of life, however short or long. . i also think ot has to do with the potential for life capability in prevention of disability or occupational barriers due to environmental concerns (early learning), occupational barriers in adult life due to early barriers or lack of social opportunities for meaningful lifelong occupation . i have never heard the term "life capability". i only understand it with the definition attached and still it is difficult to apply context to. “relevance of the life capability to occupational therapy practice” . pediatrics, nicu (neonatal intensive care), oncology, etc . working with children with chronic health conditions . children . pediatrics/development, home care, long term care, chronic disease management 	
   	
   appendix j: participants’ (n= ) written quotes about bodily health capability “occupational therapists’ understandings of the bodily health capability” . it is not % clear what you mean by reproductive health, e.g., procreation? . addressing mental health issues for those with physical health problems “relevance of bodily health capability to occupational therapy practice” . this thought need to be defined to include the individual choice to live at risk, ie. to have adequate shelter is often a choice. the definition of adequate shelter also has to be flexible. . i an uncomfortable with the conceptions of body and health described . what do they mean by bodily health, does that include mental health, neurology, abi, developmental disability, recovery from physical trauma, car accidents, cancer, diabetes related amputations, etc? i am not fond of the definitions in the ten. they seem to be politically driven and i am not sure i want to fit ot into a system that does not quite fit. why identify reproductive health to highlight more than endocrinological health for example as diabetes is an epidemic of greater proportions than infertility. . it seems this is further clarifying the previous life capability. my only concern is that disease and illness do occur and although prevention would be ideal, the treatment of all individuals regardless of health status to me is very important. . i find the inclusion of reproductive capability interesting...it reminds me of the isolation and sterilization used by the government of canada (and other countries). . ot practice cannot encompass everything. i agree physical health for mentally ill, reproductive health and adequate shelter and nutrition are vital, but not at the top of the list of things an ot would advocate for - we do not have time. we barely have time for health promotion - we are not supported by administration for this - our resources are maxed by "putting out fires" . early prevention of disability or environmental effects of poverty,. discrimination, lack of opportunity prevent individual bodily capability and also cause a continued barrier within communities and generations. 	
   	
   appendix k: participants’ (n= ) written quotes about bodily integrity capability 	
   “occupational therapists’ understandings of bodily integrity capability” . respect for an individual’s body . quality of life . i agree with the first part of the definition being about basic human rights, but i am not sure what it means about opportunities for sexual satisfaction and choice in matters of reproduction - i don't believe that abortion is a basic human right, for example, and i believe that sexual intimacy should be reserved for marriage, so i'm not sure how my beliefs fit with this definition. . accessibility “relevance of bodily health capability to occupational therapy practice” . these labels and categories are too prescriptive for me to answer these question with any conviction . this relates to advocacy for universal access to services and healthcare to ensure that individuals can move physically from place to place (for example from province to province) and not to be disadvantaged by such movement . again, i really don't like the definition here and find it a politically driven tool. i understand and respect the concept of bodily integrity being able to move about, however i would call that mobility. i believe that people should consent to treatment of any kind and should have choice. i believe there is a role in supporting victims of abuse and preventing abuse, but that is not a primary role for ot. i like the focus on capabilities, but i don't see this fitting. have you reviewed the essential capabilities for mental health care workers. that works well and is focused on health care. . ot may not have the expertise to provide trauma-informed care - would refer to another discipline with that expertise . the specifics of choice for reproduction places gender and sex within the definition. . in a holistic approach all these are. 	
   	
   appendix l: participants’ (n= ) written quotes of sense, imagination, and thought capability “occupational therapists’ understandings of sense, imagination, and thought capability” . “…but obviously it is much more than this egocentric definition you provide.” . fulfilling occupational potential . it seems that it is not limited to expression but also perception . this defines humans from other creatures on earth, so is fundamental to our appreciation of previous rights. . “…client may be able to experience but not express.” . according to the definition it is the right to expression not just expression “relevance of sense, imagination, and thought capability to occupational therapy practice” . adults with abi, neurological impairment, people with physical health issues that impact on their senses, creativity and thought processes, dementia . people with physical issues . adults with disabilities could also be included in this list . i feel like i do not have enough information or understand enough about this category to make a selection . ot is already preoccupied with self-care, self expression and other western constructs of the individual at the center of his/her universe. this is a very limited and limiting vision. . relevant to all populations --not sure if your questions mean only for these populations (people with mh issues/children with disabilities/self expression?) or especially for these three catagories . for ot this is a poor definition to tie to because it links very distinct areas of practice and gives none of them proper attention: sensory processing and regulation is a significant area of specialty for ot. including senses, as defined above is not really about senses as ot describes and understands challenges related to senses. again this is a political statement about access to education, freedom of speech, etc. this has all been said before and better in the charter of rights and freedoms and other such political documents and well as the manifestos of political parties. looking at the capabilities from an ot perspective, consider senses: the capability to recieve, interpret and utilize sensory information in order to function. imagination is the ability to use creativity to find new and creative solutions to challenges and opportunities as they arise and thought capability is the ability to use the available cognitive resources with supports as necessary to create a good quality of life, in spite of damage due to accident, illness, injury or genetic changes. . wow this whole thing is very theoretical & philosophical. . i am thinking this would relate also to adults with abi or dementia who can experience in "one's own way" . too large a definition, encompassing too many things - freedom of expression, sensory and cognitive abilities, right to education. i think this should be separated into different areas. considering that a greater number of individuals identify themselves as non-religious or atheists, would this change the wording in your definition (i.e., religious exercise)? 	
   	
   appendix m: participants’ (n= ) written quotes about emotions capability 	
   	
   “occupational therapists’ understanding of emotions capability" . it's a basic need but not sure if it's a right “relevance of emotions capability to occupational therapy practice” . yes - but again, this is such a limited vision - what about giving to others, caring for others, being relied on by others.....? . not sure if this is ot practice, as there are other professionals with more training to address some of these issues - ie psychologists . response to physical illness, recovery . anxiety management skills would be only one possible intervention that would be used to facilitate health promotion and resilience . i seem to be on a theme here. i am concerned that the first on the list is attachment to things before attachment to people. there is also attachment to events, seasons, the environment etc. from an ot perspective we need appropriate, which means positive and also boundaried relationships with others, things, events, etc. i find it really disappointing that joy, happiness, fun, creativity and belong are not mentioned at all. it also assumes that people who have had trauma and or anxiety have emotionally blighted lives. for ot, i think it is important that we support people to experience a full range of emotions including silliness. . the idea of helping people "manage their emotions" is unclear to me. the word "manage" is slightly skewed in this context. . additional ot roles ~ advocating at a policy level for prevention of harm (i.e., involved in child welfare from an occupational justice perspective); teaching children mindfulness as a self-awareness technique with to be in touch and accepting of their emotions and state . also related to assisting children with sensory processing difficulties . the list in # leaves out other types of work with mental health issues . teaching not only anxiety management skills, but other therapies like dialectical behavior therapy and chronic disease self-management. . unfortunately, do not always have the time or expertise to teach anxiety management skills, except in a mental health setting . again, in a holistic practice all the emotions capability is interrelated to the client and client’s support system or family and can't be separate whether a client is in acute care or long term mental illness in the community. 	
   	
   appendix n: participants’ (n= ) written quotes about practical reason capability “occupational therapists’ understandings of practical reason capability” . understanding cognitive strengths and limitations . ensure that as clinicians they are reflective practitioners . capacity evaluations “relevance of practical reason capability to occupational therapy practice” . once again, i don't like the definition. "forming a concept of the good". i would prefer that it be about decision making. sometimes a decision is not about good, it is about the lesser of two evils. i.e., do i take this cancer medication which will prolong life by two months with nasty side effects or do i die much sooner. neither would be "the good". abortion is a choice which is not about "the good" generally. ot does address executive function, or the ability to reason. . engaging in critical reflection about the planning of one's life is a basic part of life and i'm not sure if it is relevant to occupational therapy practice. it is an entirely normal part of life and i'm not clear about the role of an occupational therapist in this context. perhaps with head-injured clients this would be a significant role. . i have some difficulty with the word "good" and how that is defined or understood in a consistent way by all survey participants. helping clients to make personal decisions sounds like a professional boundary that could be crossed. . i perceive this as a skill rather than a basic human right, i also note that perhaps this is your opinion as you didn't ask that question? . this definition is not clear. . as long as the therapist is facilitating and not directing... 	
   	
   	
   appendix o: participants’ (n= ) written quotes about affiliation capability 	
   “occupational therapists’ understandings of affiliation capability” . occupational justice . i believe discrimination on the basis of economic status s one of the most obvious discriminations in our society today, and so should be included in your lists “relevance of affiliation capability to occupational therapy practice” . working with clients with physical disability, working with families from cultures that do not accept children with genetic or physical disabilities, working with people who will never be workers. . pediatrics . within and ot realm this should likely include discrimination as a result of disability versus ability. . are you assuming capability is located within an individual or conferred? sorry, unable to respond . definition issue again. i like the concept of affiliation but again the definition is a charter type of definition and is this time too narrow for ot. i think we need to go beyond minimum protections against a limited range of options, but rather tolerance and acceptance of the differences in people and that regardless of their affiliations they are all people. generally in canada we know enough not to discriminate against people due to color, race, etc. we need to go broader to look at discrimination based on weight, height, social strata, ability/disability, etc which for occupational therapists means a client cenetred approach. more simply, we are all entitled to have a friend and to have opportunities to be welcomed in work, school, neighborhoods, and communities of our choosing. i am not sure why work is separated out in the definition any more than other activities such as school, religious participation, participating in community center activities, etc. . social interactions are often times dependent upon physical accessibility to environments that allow for these interactions to flourish. i am not quite sure why the thinking or description has parceled out mental health as if it happens in isolation from physical health. . are the nd and fourth items as related to helping clients with these developmental tasks? . a and b should be separate issues. two different constructs. . parts a & b are quite different things - they should not be lumped together . if only we could all find such a supportive affiliation in occupation! 	
   	
   	
   appendix p: participants’ (n= ) written quotes about other species capability 	
   “occupational therapists’ understandings of other species capability” . not just "relationship with" environment, but rather "relationship in harmony with" environment “relevance of other species capability to occupational therapy practice” . i think this is not necessarily a growing area of practice, but rather a growing area of scholarship about occupation. . as before . of course relationships with animals affects health, but this is not why this construct is relevant to ot. . it is a nice generic statement but it is not necessarily relevant to ot. for a client living on the th floor of an apartment with no pets or plants, who loves that urban lifestyle, that is a personal choice, to be respected. . also a medium for therapy . not something that is usually addressed due to time constraints etc. with a client centered approach this could be a critical component of a person's wellbeing and enjoyment, and fulfillment of their life, and thus become a focus. . it may not be the main focus of ot, however our occupational relationship with other species can be integral to the client's role in the community/world, and impacts personal growth which impacts well- being. . if human relationships are important in the development of a sense of self, then so too are relationships to the environment, etc. in developing a fully engaged and interactive self within the environment that an individual exists. . - related to one narrow component of environment- re main focus of ot practice - depending on the client it may well be the main focus . while a client's relationship with the environment may not be the focus of occupational therapy, it may be an important component of strong programming by offering effective strategies and tools for a particular client (particularly one who is highly connected to animals, nature and the environment). . a lot of health is very unhealthy for some people . this is integral to the practice of occupational therapy and to human life . although i agree this is not the main focus of practise, health indicators and advocacy for factors that underlie health (housing, nutrition, social/relationship stability and support) is a growing and important role for ot to become involved in on a professional basis and in the personal/political realm. . we need more relationships to the natural world in diverse ways. 	
   	
   	
   appendix q: participants’ (n= ) written quotes about play capability	
  	
   	
   “occupational therapists’ understandings of play capability” . i disagree that these last two points are true for everyone. this sounds very ethnocentric and prescriptive. . occupational justice “relevance of play capability to occupational therapy practice” . serving as a therapeutic approach in geriatrics, rehabilitation from accident, injury, illness . i believe this is of major importance for the geriatric population as well. . interesting that you did not give us a choice about play in older adulthood . if therapy were more fun, there would be more compliance with recommendations. if one can have fun in spite of illness, etc. there is improved quality of life. a key issue for ot in any area of practice. it is not just about recreational activities though, it is about finding pleasure, excitement, pride, and joy in day to day activities as well. . does this preserve or support quality of life? . this could be considered a basic human right. . recreational activity is that defined the same as leisure activity in this study 	
   	
   	
   appendix r: participants’ (n= ) written quotes of control over one’s environment capability “occupational therapists’ understanding of control over one’s environment capability” . fundamental inclusion “relevance of control over one’s environment capability to occupational therapy practice” . enabling people to form opinions, validating opinions, building confidence/self-esteem . advocating with clients/client groups . building skills? i think this ought to be "building opportunities". . this one is not about ot at all really. it is a political statement about basis rights and freedoms. when i think of control over one's environment i think of accessible work, school, leisure and housing. i think of assistive technologies and other supports. . wow your definitions are long & convoluted . this definition should be explained or teased out more fully . again the parts are lumped together but are quite different and my snawers would be different for each . not sure the definition is truly reflective of the title "one's environment capacity" . political environmental are tricky to work with to clients although awareness of the political influences would be a start for the client to understand their position in 	
   	
   	
   appendix s: participants’ (n= ) written quotes about the central human functional capabilities 	
   “occupational therapists’ understandings about the chfcs” . some of the thoughts fit with many ot frameworks but none of them fit with any one framework therefore i have answered the questions based on if the majority of thoughts match the framework “relevance of the chfcs to occupational therapy practice” . given the list of other possible frameworks that are useful, i am not sure of the value or relevance of this one. i do like the key topics, but feel that the definitions and content are politically driven, not health care driven. in some cases the understanding of terms even is not reflective of ot, (senses, for example). i like the capabilities approach though and would see benefit in having a capabilities model for ot. . your definitions were too convoluted to make sense of . the definitions are too abstract and/or multifocal, with no opportunity to separate them for discussion or application to specific cases. . though this is a theoretical model, i think it just puts what we practice into words. it frames holistic practice. . i graduated in - never have been able to keep those theoretical models straight. i think ot is unique in looking at clients as a whole person within a complex system/environment and in being client- centered; trendy now, but i remember an ot instructor telling us in the s the client was the most important person on the team . i think it is an interesting and comprehensive model worth exploring for ot application 	
   patient benefit of dog-assisted interventions in health care: a systematic review research article open access patient benefit of dog-assisted interventions in health care: a systematic review martina lundqvist *, per carlsson , rune sjödahl , elvar theodorsson and lars-Åke levin abstract background: dogs are the most common companion animal, and therefore not surprisingly a popular choice for animal-assisted interventions. dog-assisted interventions are increasingly used in healthcare. the aim of the review was to conduct a systematic literature review of quantitative studies on dog-assisted interventions in healthcare, with the intention of assessing the effects and cost-effectiveness of the interventions for different categories of patients. methods: a systematic review of the scientific literature reporting results of studies in healthcare, nursing home or home care settings, was conducted. the inclusion criteria applied for this review were: quantitative studies, inclusion of at least study subjects, existence of a control and performed in healthcare settings including nursing homes and home care. the electronic databases pubmed, amed, cinahl and scopus were searched from their inception date through january , for published articles from peer-reviewed journals with full text in english. results: eighteen studies that fulfilled the inclusion criteria, and were judged to be of at least moderate quality, were included in the analysis. three of them showed no effect. fifteen showed at least one significant positive effect but in most studied outcome measures there was no significant treatment effect. dog-assisted therapy had the greatest potential in treatment of psychiatric disorders among both young and adult patients. dog-assisted activities had some positive effects on health, wellbeing, depression and quality of life for patients with severe cognitive disorders. dog-assisted support had positive effects on stress and mood. conclusions: the overall assessment of the included studies indicates minor to moderate effects of dog-assisted therapy in psychiatric conditions, as well as for dog-assisted activities in cognitive disorders and for dog-assisted support in different types of medical interventions. however, the majority of studied outcome measures showed no significant effect. keywords: animal-assisted therapy, cost-benefit analysis, dogs, dog-assisted activity, dog-assisted intervention, dog-assisted support, dog-assisted therapy, outcome assessment (health care), quality of life, treatment outcome background interaction with animals has been a favorite human pursuit since the dawn of history. numerous studies have reported that animals exert favorable effects on psychological, physiological and social aspects of human wellbeing [ ]. the increasing use of animals in health and social care is therefore not surprising. animal-assisted interventions (aai) are more or less goal oriented and structured interventions that intentionally incorporate animals in health, education and human service for the purpose of therapeutic gains and improved health and wellness [ ]. aai usually consists of three sub- categories; animal-assisted therapy (aat), animal- assisted education (aae) and animal-assisted activities (aaa). these concepts are defined in a slightly different way by various organizations. according to the inter- national association of human-animal interaction organi- zations (iahaio), aat is a goal oriented, planned and * correspondence: martina.lundqvist@liu.se department of medical and health sciences, division of health care analysis, linköping university, , linköping, sweden full list of author information is available at the end of the article © the author(s). open access this article is distributed under the terms of the creative commons attribution . international license (http://creativecommons.org/licenses/by/ . /), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated. lundqvist et al. bmc complementary and alternative medicine ( ) : doi . /s - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf mailto:martina.lundqvist@liu.se http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / structured therapeutic intervention directed and/or deliv- ered by health, education and human service professionals, and intervention progress is measured and included in pro- fessional documentation [ ]. according to the american veterinary medical association (avma), the definition aat should also be an integral part of the treatment process [ ]. most definitions of aaa differ from aat in several aspects; the absence of specific treatment goals, delivery by volunteers, spontaneous visit content and no obligation to document. according to the iahaio defin- ition, aaa is a “planned and goal oriented informal inter- action and visitation conducted by the human-animal team for motivational, educational and recreational purposes. human-animal teams must have received at least introduc- tory training, preparation and assessment to participate in informal visitations.” [ ]. another difference between aat and aaa seems to be the purpose, which is more focused on wellbeing in aaa and on health improvement in aat. we also understand that aaa could be provided by differ- ent degrees of integration with a formal treatment process. however, this leads us to conclude that there are no estab- lished definitions and that there is no clear division between aat and aaa. dogs are the most common companion animal and therefore not surprisingly a popular choice for aai [ ]. they are keen observers of human reactions through their exceptional ability to read signs of will and emotion from human faces [ ]. they also exhibit a behavior that humans interpret as happy, friendly and affectionate which makes them suitable to be used in interventions with a thera- peutic aim [ ]. this review is therefore delimited to inter- ventions with dogs as the assisting animal, transposing the term aat to the corresponding dog-assisted therapy (dat) and aaa to dog-assisted activity (daa). in our review we have identified another relevant sub- category to dog-assisted interventions (dai), namely dog-assisted support (das). das is delivered by a trained health care professional or a volunteer, within the scope of the professionals’ practice, in order to have alleviating or distracting effects during short term diagnostic or therapeutic interventions. in our opinion, das deserves to be a separate category since das in contrast to daa has a specific diagnostic or therapeutic intention, especially in reducing anxiety and stress both in diagnostic and therapeutic contexts, but compared to dat, das has no specific therapeutic goal. rather, das focuses on reduced anxiety and quality of life with indir- ect effect to facilitate a regular treatment process. figure illustrates our identified categories. previous reviews of dai studies [ – ] have focused exclusively on single conditions or on specific po- pulations. in this review we have included various condi- tions without any limitation of the characteristics of the population, except for sample size. aim the aim of the review was to conduct a systematic literature review of quantitative studies on dog-assisted interventions in healthcare, with the intention of asses- sing the effects and cost-effectiveness of the interven- tions for different categories of patients. method search methods for identification of studies studies were identified by searching the electronic data- bases pubmed, amed, cinahl and scopus from their inception date through january . some of the included studies were identified outside standard data- base searches (e.g. hand searching reference lists from included articles and systematic reviews). we searched for various terms of dai and outcomes. the search was conducted as presented in table . selection of studies the inclusion criteria applied in the review were deter- mined before the initial literature search. the first four fig. dog-assisted intervention (dai) comprises dog-assisted therapy (dat), dog-assisted activity (daa) or dog-assisted support (das) table search strategy dog or canine and animal-assist* or dog-assist* or pet-assist* or canine-assist* or animal-therap* or dog-therap* or pet-therap* or canine-therap* or “animal visitation” or “dog visitation” or “pet visitation” or “canine visitation” or animal-physiotherap* or dog-physiotherap* or pet-physiotherap* or canine-physiotherap* or therapy-dog or visiting-dog and effect or effectiveness or benefit or quality of life or economics or cost-effectiveness or ethics or outcome lundqvist et al. bmc complementary and alternative medicine ( ) : page of criteria were a consequence of the scope of the study. the last three criteria were determined by the re- search group as basic quality criteria to be fulfilled. the inclusion criteria; � studies of dai performed in healthcare settings including nursing homes and home care. � studies collecting primary data. � quantitative studies (i.e. measuring outcomes with numerical scales). � separate result presentation of effects. � at least study subjects. � existence of a control. � published articles from peer-reviewed journals with full text in english. one of the authors (ml) conducted the initial search in may , as well as a second search in september and a third search in january . all the titles and abstracts from the identified studies were examined to determine the relevance of the articles. if the title and abstract met with the inclusion criteria the study passed on to the next stage of the review process. studies with insufficient information in title and abstract were also included in the next stage of the review process. the studies that remained after the initial selection, were read in full to confirm eligibility and determine quality. review of quality pairs of authors independently read the articles in full to assess eligibility and to determine the quality. traditional criteria for judgment of scientific quality were used, in- cluding; adequate control group(s), control of confounders, randomization, adequately described experimental design, and relevant measured outcome variables [ , ]. the quality of the studies was rated as high, moderate or low. a study determined as being of high quality had to fulfill all the above mentioned criteria and a study determined as being of moderate quality had to fulfill most of the above mentioned criteria. when a study was determined as being of low quality it failed to fulfill several of the above men- tioned criteria or had major shortcomings in some of the criteria. studies rated as moderate or high were included in the analysis. studies rated as low quality were excluded, but are presented with a comment in an additional file (see additional file ). for the included studies the following data was extracted and gathered into a structured table; ref- erence, characteristics of patients (age, gender, condition), type of study, type of intervention, study period, sample size, outcomes, author conclusion, and scientific quality rating. categorization to establish in what context dais have effect we catego- rized the interventions as therapeutic (dat), activating (daa) or supportive (das) intervention, based on the criteria presented in table . results results of the search the result of the search is illustrated in the flow chart in fig. . it resulted in unique articles (after duplicate removal). another studies were included through other sources. based on the information in the title and the abstract articles did not meet the eligibility cri- teria and were therefore excluded. the main reason for early exclusion was that the article did not scope dai. additionally, articles were excluded after reading the full text. of these articles, were excluded since they did not meet the inclusion criteria and were ex- cluded due to low quality [ – ] (see additional file ). finally, studies that fulfilled the inclusion criteria, and were judged to be of at least moderate quality, were in- cluded in the final analysis. none of the studies were con- sidered to be of high quality. a summary of the studies included in the final analysis is presented in tables and . included studies the included studies were published in the time period – . countries of the corresponding authors that were represented were usa ( studies), italy ( studies), australia, columbia, denmark, germany, norway, spain ( study each). seventy-eight percent of the studies were randomized controlled trials. two studies were cohort studies with a pre-post intervention. one study adopted a within- subject, time series design and one used a crossover design. studied patients the number of patients included in the studies varied, between and . eleven studies had – , four had – , two had – , and one had – patients (table ). in of the studies the patients were adults. the remaining studies included children and ad- olescents. the gender distributions favored women, of the studies had > % women. studied disorders studies on cognitive disorders dominated the selected studies [ – ]. in four studies the patient conditions were psychiatric disorders, of which three included children or adolescents with psychiatric disorders and one included patients cared for in institutions due to psychiatric disorders [ – ]. six studies examined stress and mood [ – ]. target symptoms and diseases were children undergoing physical examination, chil- dren undergoing dental procedure, children undergoing venipuncture, patients with cancer and older adults. in lundqvist et al. bmc complementary and alternative medicine ( ) : page of table criteria for categorization of interventions dat daa das intervention aim of action goal orientated no specific goals no specific goals content of activity structured spontaneous spontaneous amount of activity multiple sessions multiple sessions single session treatment integration high low high dog handler/therapist educated volunteer volunteer professional not professional semi-professional effect/focus health well-being distraction stress reduction records identified through database searching (n = ) s cr ee n in g in cl us io n a ss es sm en t o f el ig ib il it y id en ti fi ca ti on additional records identified through other sources (n = ) records screened (n = ) records excluded (n = ) full-text articles assessed for eligibility (n = ) full-text articles excluded (n = ) did not meet the inclusion criteria’s (n= ) judge to be of low quality with reasons presented in additional file (n= ) studies included in the analysis (n = ) fig. flow chart of the work process. prisma flow diagram [ ] lundqvist et al. bmc complementary and alternative medicine ( ) : page of t a b le su m m ar y o f st u d ie s in cl u d ed in th e re vi ew fi rs t au th o r (y ea r) pa ti en ts st u d y d es ig n se ss io n s in te rv en ti o n c o n tr o l n m ea n ag e (y ea rs ) g en d er (% m al e) ta rg et g ro u p d u ra ti o n (w ee ks ) n u m b er le n g th (m in u te s) lu tw ac k- bl o o m ( ) [ ] . . re si d en ts liv in g in lo n g -t er m ca re se tt in g pr e- p o st – vi si t fr o m a th er ap y d o g vi si t w it h o u t d o g m aj ic ( ) [ ] . . re si d en ts w it h d em en ti a pr e- p o st d o g as si st ed th er ap y re g u la r th er ap y tr av er s ( ) [ ] . re si d en ts w it h d em en ti a ra n d o m iz ed co n tr o l – d o g as si st ed th er ap y re g u la r th er ap y bo n o ( ) [ ] . . n o n -h o sp it al iz ed p at ie n ts w it h lo w -m ild a lz h ei m er ’s d is ea se ra n d o m iz ed co n tr o l d o g as si st ed th er ap y n o ac ti ve in te rv en ti o n fr ie d m an n ( ) [ ] . . a ss is te d liv in g re si d en ts w it h co g n it iv e im p ai rm en t/ d em en ti a ra n d o m iz ed co n tr o l – d o g as si st ed th er ap y re g u la r th er ap y o ls en ( ) [ ] ex p er im en ta l . c o n tr o l . . re si d en ts w it h d em en ti a ra n d o m iz ed co n tr o l d o g as si st ed th er ap y re g u la r th er ap y th o d b er g ( ) [ ] . n u rs in g h o m e re si d en ts /d em en ti a ra n d o m iz ed co n tr o l vi si t fr o m a th er ap y d o g vi si ts fr o m a p er so n b rin g in g a ro b o t se al o r so ft to y ca t sc h u ck ( ) [ ] ex p er im en ta l . c o n tr o l . . c h ild re n w it h a d h d ra n d o m iz ed co n tr o l – d o g as si st ed th er ap y re g u la r th er ap y st ef an in i ( ) [ ] . . c h ild re n w it h m en ta l d is o rd er s ra n d o m iz ed co n tr o l d o g as si st ed th er ap y re g u la r th er ap y c al vo ( ) [ ] . . pa ti en ts w it h sc h iz o p h re n ia ra n d o m iz ed co n tr o l d o g as si st ed th er ap y re g u la r th er ap y st ef an in i ( ) [ ] ex p er im en ta l . c o n tr o l . c h ild re n w it h m en ta l d is o rd er s ra n d o m iz ed co n tr o l d o g as si st ed th er ap y re g u la r th er ap y n ag en g as t ( ) [ ] . . c h ild re n u n d er g o in g p h ys ic al ex am in at io n w it h in -s u b je ct ,t im e se rie s d es ig n ⎼ d o g p re se n t d u rin g p h ys ic al ex am in at io n ph ys ic al ex am in at io n w it h o u t d o g h an se n ( ) [ ] ex p er im en ta l . c o n tr o l . . c h ild re n u n d er g o in g p h ys ic al ex am in at io n ra n d o m iz ed co n tr o l ⎼ ⎼ d o g p re se n t d u rin g p h ys ic al ex am in at io n ph ys ic al ex am in at io n w it h o u t d o g h av en er ( ) [ ] . . c h ild re n u n d er g o in g d en ta l p ro ce d u re s ra n d o m iz ed co n tr o l ⎼ ⎼ d o g p re se n t d u rin g d en ta l p ro ce d u re d en ta lp ro ce d u re w it h o u t d o g jo h n so n ( ) [ ] d o g vi si ts h u m an vi si ts re ad in g pa ti en ts u n d er g o in g n o n -p al lia ti ve ra d ia ti o n th er ap y ra n d o m iz ed co n tr o l vi si t fr o m a th er ap y d o g vi si t w it h o u t d o g o r re ad in g se ss io n s va g n o li ( ) [ ] ex p er im en ta l . c o n tr o l . c h ild re n u n d er g o in g ve n ip u n ct u re ra n d o m iz ed co n tr o l ⎼ – d o g p re se n t d u rin g ve n ip u n ct u re ve n ip u n ct u re w it h o u t d o g kr au se -p ar el lo ( ) [ ] . . o ld er ad u lt s c ro ss o ve r ⎼ vi si t fr o m a th er ap y d o g vi si t w it h o u t d o g h ar p er ( ) [ ] ex p er im en ta l c o n tr o l . pa ti en ts u n d er g o n e to ta l jo in t ar th ro p la st y ra n d o m iz ed co n tr o l ⎼ ph ys ic al th er ap y w it h a th er ap y d o g ph ys ic al th er ap y lundqvist et al. bmc complementary and alternative medicine ( ) : page of t a b le su m m ar y o f o u tc o m es fr o m st u d ie s in cl u d ed in th e re vi ew fi rs t au th o r (y ea r) c o n d it io n in te rv en ti o n o u tc o m es o f d a i a u th o r’s co n cl u si o n lu tw ac k- bl o o m ( ) [ ] c o g n it iv e d is o rd er s a ct iv at in g ⎼g er ia tr ic d ep re ss io n sc al e (g d s) ↑ pr o fil e o f m o o d st at es (p o m s) th e re su lt s su g g es t th at th e fin d in g s in d ic at ed th at th e in te rv en ti o n w o rk s b et te r w it h g en er al m o o d d is o rd er s th an w it h d ep re ss io n al o n e. m aj ic ( ) [ ] c o g n it iv e d is o rd er s a ct iv at in g ⎼d em en ti a m o o d a ss es sm en t sc al e (d m a s) ⎼m in i-m en ta l st at e ex am in at io n (m m se ) ⎼c o h en -m an sf ie ld a g it at io n in ve n to ry (c m a i) a a t is a p ro m is in g o p ti o n fo r th e tr ea tm en t o f ag it at io n /a g g re ss io n an d d ep re ss io n in p at ie n ts w it h d em en ti a. tr av er s ( ) [ ] c o g n it iv e d is o rd er s a ct iv at in g ↑ ↓ q u al it y o f li fe -a lz h ei m er ’s d is ea se (q o l- a d )a ⎼t h e m o s- it em sh o rt fo rm h ea lt h su rv ey (s f- ) ⎼g er ia tr ic d ep re ss io n sc al e sh o rt fo rm (g d s- sf ) ↑ m u lt id im en si o n al o b se rv at io n al sc al e fo r el d er ly su b je ct s (m o se s) b th e au th o rs co n cl u d e th at th e st u d y p ro vi d es so m e ev id en ce th at d o g -a ss is te d th er ap y m ay b e b en ef ic ia l fo r so m e re si d en ts o f ag ed ca re fa ci lit ie s w it h d em en ti a. bo n o ( ) [ ] c o g n it iv e d is o rd er s a ct iv at in g ↑ ba rt h el in d ex ↑ a lz h ei m er d is ea se a ss es sm en t sc al e (a d a s) ↓ c o rn el l sc al e fo r d ep re ss io n in d em en ti a (c sd d ) th e st u d y co n fir m s th e fe as ib ili ty o f a a t w it h d o g s in lo w -m ild a lz h ei m er ’s d is ea se fr ie d m an n ( ) [ ] c o g n it iv e d is o rd er s a ct iv at in g ⎼b ar th el in d ex - ph ys ic al fu n ct io n ↑ c o rn el l sc al e fo r d ep re ss io n in d em en ti a (c sd d ) ⎼a es – em o ti o n al fu n ct io n ⎼c o h en -m an sf ie ld a g it at io n in ve n to ry (c m a i) ev id en ce su p p o rt s th at th e pa l p ro g ra m h el p s p re se rv e/ en h an ce fu n ct io n o f a l re si d en ts w it h c i. o ls en ( ) [ ] c o g n it iv e d is o rd er s a ct iv at in g ↑ c o rn el l sc al e fo r d ep re ss io n in d em en ti a (c sd d ) ⎼b rie f a g it at io n ra ti n g sc al e (b a rs ) ↑ q u al it y o f li fe in la te -s ta g e d em en ti a (q u a li d )c a n im al -a ss is te d ac ti vi ti es m ay h av e a p o si ti ve ef fe ct o n d ep re ss io n an d q o l in o ld er p eo p le w it h d em en ti a. th o d b er g ( ) [ ] c o g n it iv e d is o rd er s a ct iv at in g ⎼m in i-m en ta l st at e ex am in at io n (m m se ) ⎼g o tt fr ie d -b ra n e- st ee n sc al e (g bs ) ⎼g er ia tr ic d ep re ss io n sc al e (g d s) ⎼s le ep d at a ⎼b o d y m as s in d ex (b m i) vi si t ty p e d id n o t af fe ct th e lo n g -t er m m en ta l st at e o f th e p at ie n ts .t h e re la ti o n sh ip b et w ee n sl ee p d u ra ti o n an d d o g -a cc o m p an ie d vi si ts re m ai n s to b e ex p lo re d . sc h u ck ( ) [ ] ps yc h ia tr ic d is o rd er s th er ap eu ti c ↑ a d h d -r at in g sc al e- fo u rt h ed it io n (a d h d -r s- iv ) ↑ so ci al sk ill s im p ro ve m en t sy st em s- ra ti n g sc al es (s si s- rs ) ↑ so ci al c o m p et en ce in ve n to ry (s c i) re su lt s su g g es t th at c a i o ff er s a n o ve l th er ap eu ti c st ra te g y th at m ay en h an ce co g n it iv e- b eh av io ra l in te rv en ti o n s fo r ch ild re n w it h a d h d . st ef an in i ( ) [ ] ps yc h ia tr ic d is o rd er s th er ap eu ti c ↑ c h ild re n g lo b al a ss es sm en t sc al e (c g a s) ↑ fo rm at o f h o sp it al ca re sc al e ↑ o rd in ar y sc h o o l at te n d an ce sc al e ↑ pa tie n ts b eh av io rs d u rin g a a t o u r re su lt s ve rif y th at a a t ca n h av e si g n ifi ca n t p o si ti ve ef fe ct s o n th er ap eu ti c p ro g re ss an d th e re co ve ry p ro ce ss . c al vo ( ) [ ] ps yc h ia tr ic d is o rd er s th er ap eu ti c ⎼p o si ti ve an d n eg at iv e sy n d ro m e sc al e (p a n ss ) ⎼e q - d – q u al it y o f lif e ↑ a d h er en ce to tr ea tm en t ↑ d ec re as e in sa liv a co rt is o l th e re su lt s su g g es t th at a a t co u ld b e a u se fu la d ju n ct to co n ve n ti o n al p sy ch o so ci al re h ab ili ta ti o n fo r p eo p le w ith sc h iz o p h re n ia . st ef an in i ( ) [ ] ps yc h ia tr ic d is o rd er s th er ap eu ti c ↑ c h ild re n g lo b al a ss es sm en t sc al e (c g a s) ↑ yo u th se lf re p o rt (y sr ) ↑ pa tie n ts b eh av io rs d u rin g a a td th e ef fe ct s o f a a t in re d u ci n g em o ti o n al an d b eh av io ra l sy m p to m s an d in cr ea si n g g lo b al co m p et en ce an d p sy ch o lo g ic al fu n ct io n in g w er e su b st an ti at ed . n ag en g as t ( ) [ ] st re ss an d m o o d su p p o rt iv e ↑ sy st o lic b lo o d p re ss u re ⎼d ia st o lic b lo o d p re ss u re lundqvist et al. bmc complementary and alternative medicine ( ) : page of t a b le su m m ar y o f o u tc o m es fr o m st u d ie s in cl u d ed in th e re vi ew (c o n tin u ed ) ↑ m ea n ar te ria l b lo o d p re ss u re ↑ h ea rt ra te ⎼p er ip h er al sk in te m p er at u re ↑ o b se rv at io n sc al e o f be h av io ra l d is tr es s (o sb d ) th e fin d in g s su p p o rt th e u se o f a co m p an io n an im al in re d u ci n g st re ss ex p er ie n ce d b y ch ild re n d u rin g p h ys ic al ex am in at io n . h an se n ( ) [ ] st re ss an d m o o d su p p o rt iv e ⎼s ys to lic b lo o d p re ss u re ⎼d ia st o lic b lo o d p re ss u re ⎼m ea n ar te ria l b lo o d p re ss u re ⎼h ea rt ra te ⎼p er ip h er al sk in te m p er at u re ↑ o b se rv at io n sc al e o f be h av io ra l d is tr es s (o sb d ) c o m p an io n an im al s m ay b e u se fu l in a va rie ty o f h ea lt h ca re se tt in g s to d ec re as e p ro ce d u re -in d u ce d d is tr es s in ch ild re n . h av en er ( ) [ ] st re ss an d m o o d su p p o rt iv e ⎼p er ip h er al sk in te m p er at u re ⎼o b se rv at io n sc al e o f be h av io ra l d is tr es s (o sb d ) th e au th o rs co n cl u d e th at fu rt h er re se ar ch u si n g a la rg er sa m p le sh o u ld b e d o n e to d et er m in at e th e ef fe ct o f a co m p an io n an im al w it h ch ild re n fo r w h o m th e d en ta l vi si t is m o st st re ss fu l. jo h n so n ( ) [ ] st re ss an d m o o d a ct iv it y ⎼p ro fil e o f m o o d st at es (p o m s) ⎼s el f- p er ce iv ed h ea lt h q u es ti o n n ai re ⎼o rie n ta ti o n to li fe q u es ti o n n ai re (o tl q ) th e st u d y w ar ra n ts re p lic at io n w it h a la rg er sa m p le to d et er m in e ap p lic ab ili ty o f an im al -a ss is te d ac ti vi ty in ca n ce r p at ie n ts w it h ra d ia ti o n th er ap y. va g n o li ( ) [ ] st re ss an d m o o d su p p o rt iv e ↑ o b se rv at io n sc al e o f be h av io ra l d is tr es s (o sb d ) ⎼t h e w o n g -b ak er sc al e (f ac e sc al e) ⎼v is u al an al o g sc al e (v a s) - p ai n ⎼s ta te tr ai t a n xi et y in ve n to ry (s ta i) ↑ se ru m co rt is o l p la sm a th e p re se n ce o f d o g s d u rin g ve n ip u n ct u re re d u ce s d is tr es s in ch ild re n an d im p ro ve s p h ys ic al ,s o ci al , em o ti o n al ,a n d co g n it iv e fu n ct io n in g . kr au se -p ar el lo ( ) [ ] st re ss an d m o o d a ct iv it y ↑ sy st o lic b lo o d p re ss u re ⎼d ia st o lic b lo o d p re ss u re ↑ h ea rt ra te st u d y fin d in g s su p p o rt ed th at p et th er ap y si g n ifi ca n t d ec re as ed b lo o d p re ss u re an d h ea rt ra te . h ar p er ( ) [ ] pa in su p p o rt iv e ↑ vi su al an al o g sc al e (v a s) - p ai n h o sp it al c o n su m er a ss es sm en t o f h ea lt h ca re pr o vi d er s an d sy st em s su rv ey (h c a h ps )e th e u se o f th er ap y d o g s h as a p o si ti ve ef fe ct o n p at ie n ts ’p ai n le ve l an d sa ti sf ac ti o n w it h h o sp it al st ay af te r to ta l jo in t re p la ce m en t. ↑ st at is ti ca l si g n if ic an t im p ro ve m en t fo r th e d a i co m p ar ed to th e al te rn at iv e ↓ st at is ti ca l si g n if ic an t im p ai rm en t fo r th e d a i co m p ar ed to th e al te rn at iv e ⎼ n o st at is ti ca l si g n if ic an t ch an g e b et w ee n th e al te rn at iv es a si g n if ic an t im p ro ve m en t in o n e fa ci lit y an d si g n if ic an t im p ai rm en t in an o th er .t h e im p ai rm en t m ay h av e b ee n ef fe ct ed b y an o u tb re ak o f g as tr o en te ri ti s b p at ie n ts w it h h ig h er (w o rs e) b as el in e sc o re s c p at ie n ts w it h se ve re d em en ti a d § in d ic at in g im p ro ve m en t in m o ti va ti o n , re la ti o n sh ip , so ci al iz at io n , cu re an d af fe ct s e p at ie n ts in th e in te rv en ti o n g ro u p h ad h ig h er p ro p o rt io n s o f to p b o x sc o re s in ca te g o ri es o f n u rs in g co m m u n ic at io n an d p ai n m an ag em en t lundqvist et al. bmc complementary and alternative medicine ( ) : page of one study the intervention was preformed to reduce pain for patients undergoing total knee joint arthroplasty [ ]. studied controls in all studies expect two, the control treatment was a visit, series of visits, a therapy session or series of ther- apy sessions without a dog. in the study by thodberg et al. the controls were either a visit from a person bringing a robot seal or a visit from a person bringing a soft-toy cat [ ]. in the study by bono et al. the control group re- ceived no active intervention [ ]. outcomes the studies included a variety of outcome measures and instruments (table ), physiological parameters e.g. blood pressure, heart rate, cortisol in saliva, skin temperature; disease specific measures e.g. dementia mood assessment scale, geriatric depression scale, cohen-mansfield agitation inventory; general functional measures e.g. observation scale of behavioral distress, profile of mood states, self-perceived health questionnaire, orientation to life questionnaire; generic health related quality of life measures e.g. eq- d, quality of life in late-stage dementia; and other measure- ments including e.g. sleep data, body mass index, and ordin- ary school attendance. in the column ‘outcomes of dai’ (table ) we have summarized the outcome changes for the different studies, based on statistical significance. table shows the number of studies with at least one statistically significant positive outcome measure divided by patient condition and intervention category. cognitive disorders seven trials studied cognitive disorders and were all categorized as daa [ – ]. they differed in terms of patient population severity, which varied from mild cognitive impairment to severe dementia. in all studies multiple sessions were used during periods varying in length from to weeks. the number of sessions varied between and , and the length of sessions were – min. the studies also differed regarding control group treat- ments. in friedman et al., thodberg et al. and lutwack et al. the control group participants were given another structured intervention [ , , ]. in majic et al., olsen et al. and travers et al. the control group was treated as usual [ , , ]. in the study conducted by bono et al. the control group received no active inter- vention [ ]. two of the studies showed some decrease in depres- sion specific instruments [ , ]. travers et al. showed that patients with worse baseline depression scores in the daa group, significantly improved depression scores in comparison to the control group. they also found significant improvements in quality of life in one of the facilities studied, but these results were confounded by an outbreak of gastroenteritis with subsequent signifi- cant decrease in qol in another unit [ ]. in the fried- man et al. study, depression decreased significantly in the daa group after three months but not in the control group [ ]. in the study by olsen et al. patients with severe dementia in the daa group had an im- proved quality of life at follow up [ ]. bono et al. showed a significant difference in reduction of functional status between the daa group and the control group after eight months. in the daa group, the development of cognitive impairment also slowed up in comparison to the control group [ ]. in thodberg et al. the sessions lasted only min and the control group were activated with a robot seal or a soft toy cat. they found no effect in measures of depression [ ]. also in lutwack et al. the patients only received short sessions, the results showed no effect in measures of depression but a signifi- cant improvement in mood for those receiving visits from a therapy dog [ ]. concerning cognitive disorder, we conclude that the included studies differed in terms of severity of patient conditions, and in particular in the characteristics of daa and the activity offered to the control group. given these differences, treatment of cognitive disorders in a nursing home setting may result in some positive effects on health and wellbeing, most likely on depression and on quality of life for patients with severe dementia. psychiatric disorders the four trials that studied psychiatric disorders were all categorized as dat, and were randomized in a pre-post table number of studies divided into condition, type of intervention, and the presence of positive outcome condition therapeutic intervention activating intervention supportive intervention at least one significant positive outcome yes no yes no yes no cognitive disorder psychiatric disorder stress and mood pain lundqvist et al. bmc complementary and alternative medicine ( ) : page of experimental design. three of the included studies in- vestigated patients in child and adolescent psychiatry [ , , ], and one studied patients from adult psych- iatry [ ]. all of the studies comprised week dat programs in different settings except for the study con- ducted by calvo et al., where the intervention lasted weeks [ ]. in both studies conducted by stefanini et al. dat was compared with standard treatment in children and ado- lescents admitted to a psychiatry unit for acute mental disorder [ , ], while schuck et al. compared cognitive-behavioral intervention delivered with or with- out dat in children with adhd [ ]. in the study by calvo et al. [ ] of adult inpatients with schizophrenia, dat was assessed as an adjunct to, and in comparison with, conventional psychosocial rehabilitation. all three studies of young patients with psychiatric disorder showed that dat resulted in significant im- provements on different psychometric scales and mea- sures [ , , ]. the two dat studies, studying young patients with acute mental disorders, found improve- ments in global functioning, school attendance, as well as self-reported emotional-behavioral symptoms [ , ]. dat in adhd children resulted in a greater reduction in the severity of adhd symptoms in comparison to cognitive-behavioral interventions without dat [ ]. calvo et al. showed that after weeks of rehabilitation the dat group had no benefit on the positive and nega- tive syndrome scale (panss), but in comparison with conventional rehabilitation, a significant reduction of negative symptomatology, a higher adherence to the program, and cortisol reduction were found after the dat sessions [ ]. in summary, all studies of dat in psychiatric disor- ders showed significant reductions in symptoms, and higher program adherence. stress and mood seven trials studied stress and mood, five of them were categorized as das and two as daa. nagengast et al., hansen et al. and havener et al. examined effects of das on physiological and behavioral distress among children undergoing a physical examination or a dental procedure [ , ]. vagnoli et al. studied the effects of das in children undergoing venipuncture [ ]. johnson et al. conducted a study in a radiation oncology unit examining effects of daa among patients undergoing non-palliative radiation therapy [ ]. krause-parello et al. [ ] investigated changes in older adult’s cardiovascu- lar health before and after a daa. in the study by nagengast et al. the children were exposed to two examinations, one with and one without a dog present [ ]. in hansen et al., havener et al. and vagnoli et al. the children underwent a procedure with or without the presence of a dog [ , , ]. in the study by johnson et al. two control groups were con- structed, one receiving visits from a human person and one where the patients read magazines [ ]. in the study by krause-parello et al. all patients received two visits; one with and one without a dog [ ]. in four of the six studies, the populations studied were children and the number of sessions was limited to one [ – , ]. both nagengast et al. and hansen et al. found lower stress levels during physical examination when a dog was present, compared to not present, mea- sured with the observation scale of behavioral distress (osbd) [ , ]. in addition, nagengast et al. reported a statistically significant decrease in mean arterial and sys- tolic blood pressure, heart rate and behavioral distress in the presence of a dog [ ]. vagnoli et al. also reported sig- nificant lower stress levels measured with osbd, when a dog was present, in children undergoing venipuncture [ ]. they also found significant lower levels of serum cor- tisol plasma in the intervention group compared with the control group [ ]. the study conducted by havener et al., examining children undergoing a dental procedure, was very similar to the other studies but showed no sig- nificant effects [ ]. the study conducted by johnson et al. differed from the other studies. they investigated the effects of daa during a four-week period, including sessions on adults undergoing non-palliative radiation therapy. they found no effects of daa [ ]. the study by krause-parello et al. also differed from the other studies [ ]. the study was conducted on older adult patients living at home who did not have any specific condition. the results implied a greater decrease in systolic blood pressure when visited by a dog compared to a human person. from the results they also predicted more of a decrease in heart rate during the daa compared with the conventional intervention [ ]. in summary, four out of six studies showed at least one significant positive effect. taken together, these find- ings suggest that particular das may reduce stress and positively affect the mood. pain harper et al. studied the role of das in postoperative recovery in patients after total joint arthroplasty [ ]. patients in the intervention group received a -min visit from a dog before the patient underwent physical therapy over a three-day period. the control group underwent physical therapy without any changes to nor- mal routine. patients in the intervention group reported a significant reduction of pain measured with the visual analog scale (vas) compared with the control group [ ]. like the other studies categorized as supportive in- terventions reporting positive effects, the study included few and short sessions. lundqvist et al. bmc complementary and alternative medicine ( ) : page of discussion even though there is a growing number of studies re- ported on use of animals in healthcare, the evidence base appears weak, partly due to studies including a limited number of participants. previous reviews of aai studies have focused exclusively on a single condition or a specific population. this review was delimited to dogs used as the assisting animal in a health care setting but without any limitation of the characteristics of the po- pulation. the studies fulfilling our selection criteria included diverse conditions and outcome measures. the findings were not consistent, and studies of cost- effectiveness were lacking. substantial differences were observed in the manner in which dai was applied. three major categories of inter- ventions were identified; those used for therapeutic pur- pose, those used for activating purpose and those used as support during a procedure. even if we were unable to draw firm conclusions regarding specific applications from the studies included in the current review, some promising results were seen. dat seemed to be most substantial in treatment of psychiatric disorders both among young and adult patients. daa appeared to have some positive effects on health and wellbeing as well as an effect on depression and quality of life in severe cognitive disorders. we also found that das may have positive effects on stress and mood. previous systematic reviews of the scientific literature regarding the use of dai in health care settings showed some evidence of patient benefit. however, many reviews included a mix of animals and only a handful focused exclusively on dai. one review of therapy dogs for chil- dren with autism spectrum disorders, included four studies on dai in health care. it concluded that the re- sults were encouraging but further research with better designs and larger samples were needed [ ]. another review of aat in treatment of similar patient material included fourteen studies with different kinds of animals. seven of these studies involved dogs and showed posi- tive outcomes. however, most studies included were connected with methodological weaknesses [ ]. the evidence base seemed to be better for the use of dai for residents of long-term care facilities. cipriani et al. showed that of studies reported statistically signifi- cant outcomes [ ]. even though there is some system- atic, and a substantial amount of anecdotal evidence for the effects of animals as interventions in health care, the evidence base seems to be relatively weak. overall, in all the included studies, dais were offered in combination with regular medical treatment, which means that the control group always received regular treatment. in general though, we found that the included studies were fraught with numerous obstacles and con- founding factors. for example, lack of proper control group and lack of a proper control activity, were com- mon. also, most studies had not attempted to investi- gate the impact of the dog handler. besides that, there were natural difficulties in randomization due to patient preferences, fears and possible allergies. given all the challenges mentioned above, it was a matter of concern that the number of participants was generally too small to minimize the effects of the multitude of lack of con- trol and confounding factors involved. it is possible, and even likely, that matters of suboptimal study designs may explain some of the observed differences in the effects of dai. it is also likely that the limited number of subjects included in most of the studies explained the non-statistically significant effects (type ii statistical error). it is also possible that the instruments used in the studies for measuring treatment effects did not optimally measure the effect of all important aspects of increased wellbeing. studies of dai is evidently challen- ging regarding research design, since none of the studies we selected fulfilled our criteria of “high quality”. only studies were included in the review as a primary basis for our conclusions. this limited number may be due to the strict criteria applied by us, to poor study designs, or both. one weakness with our review may be that we excluded studies with less than participants. it is possible that there exist studies based on small samples that could be judged to have at least moderate quality. there is also a possibility that we have wrongly classified one or several studies, but that would hardly affect our conclusion. another weakness of a review linked to inclusion criteria, is the limitation of including only published articles from peer-reviewed jour- nals with full text in english. this is a common delimita- tion due to a lack of resources, but of course a weakness. conclusion the overall assessment of the included studies indicates minor to moderate effects of dog-assisted therapy in psychiatric conditions, as well as for dog-assisted activ- ities in cognitive disorders and for dog-assisted support in different types of medical interventions. however, the majority of studied outcome measures showed no significant effect. additional file additional file : excluded studies due to low quality with reasons for exclusions. (docx . kb) abbreviations aaa: animal-assisted activity; aae: animal-assisted education; aai: animal- assisted intervention; aat: animal-assisted therapy; adas: alzheimer disease assessment scale; adhd-rs-iv: adhd-rating scale-fourth edition; bars: brief agitation rating scale; bmi: body mass index; c-gas: children global assessment scale; cmai: cohen-mansfield agitation inventory; csdd: cornell lundqvist et al. bmc complementary and alternative medicine ( ) : page of dx.doi.org/ . /s - - - scale for depression in dementia; daa: dog-assisted activity; dai: dog-assisted intervention; das: dog-assisted support; dat: dog-assisted therapy; dmas: dementia mood assessment scale; gbs: gottfried-brane- steen scale; gds: geriatric depression scale; hcahps: hospital consumer assessment of healthcare providers and systems survey; mmse: mini-mental state examination; moses: multidimensional observational scale for elderly subjects; osbd: observation scale of behavioral distress; otlq: orientation to life questionnaire; panss: positive and negative syndrome scale; poms: profile of mood states; qol-ad: quality of life-alzheimer’s disease; qualid: quality of life in late-stage dementia; sci: social competence inventory; ssis-rs: social skills improvement systems-rating scales; stai: state trait anxiety inventory; vas: visual analog scale; ysr: youth self report acknowledgements none. funding this study was funded by region Östergötland, sweden. availability of data and materials the dataset supporting the conclusions of this article is included within the article. authors’ contributions ml, pc, et, rs and lÅl designed the study. ml conducted the literature search. in collaboration ml, pc, et, rs and lÅl analyzed and interpreted the data. ml, pc, et, rs, lÅl contributed to the drafting of the manuscript. all authors critical revised and approved the final manuscript. ethics approval and consent to participate not applicable. consent for publication not applicable. competing interests the authors declare that they have no competing interests. publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. author details department of medical and health sciences, division of health care analysis, linköping university, , linköping, sweden. department of clinical and experimental medicine, linkoping university, linköping, sweden. department of clinical chemistry and department of clinical and experimental medicine, linköping university, linköping, sweden. received: april accepted: june references . fine ah. handbook on animal-assisted therapy: foundations and guidelines for animal-assisted interventions. th ed. san diego, ca, us: elsevier academic press; . . pet partners. terminology. https://petpartners.org/learn/terminology/. accessed feb . . international association of human-animal interaction organizations (iahaio). iahaio white paper - the iahaio definitions for animal assisted 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randomized controlled trial. clin orthop relat res. ; ( ): – . . berry a, borgi m, francia n, alleva e, cirulli f. use of assistance and therapy dogs for children with autism spectrum disorders: a critical review of the current evidence. journal of alternative & complementary medicine. ; ( ): – . . cipriani j, cooper m, digiovanni nm, litchkofski a, nichols al, ramsey a. dog-assisted therapy for residents of long-term care facilities: an evidence- based review with implications for occupational therapy. physical & occupational therapy in geriatrics. ; ( ): – . . moher d, liberati a, tetzlaff j, altman dg. preferred reporting items for systematic reviews and meta-analyses: the prisma statement. ann intern med. ; ( ): – . • we accept pre-submission inquiries • our selector tool helps you to find the most relevant journal • we provide round the clock customer support • convenient online submission • thorough peer review • inclusion in pubmed and all major indexing services • maximum visibility for your research submit your manuscript at www.biomedcentral.com/submit submit your next manuscript to biomed central and we will help you at every step: lundqvist et al. bmc complementary and alternative medicine ( ) : page of 	abstract 	background 	methods 	results 	conclusions 	background 	aim 	method 	search methods for identification of studies 	selection of studies 	review of quality 	categorization 	results 	results of the search 	included studies 	studied patients 	studied disorders 	studied controls 	outcomes 	cognitive disorders 	psychiatric disorders 	stress and mood 	pain 	discussion 	conclusion 	additional file 	abbreviations 	funding 	availability of data and materials 	authors’ contributions 	ethics approval and consent to participate 	consent for publication 	competing interests 	publisher’s note 	author details 	references edinburgh research explorer animal-assisted therapy for schizophrenia and related disorders citation for published version: hawkins, el, hawkins, rd, dennis, m, williams, jm & lawrie, sm , 'animal-assisted therapy for schizophrenia and related disorders: a systematic review', journal of psychiatric research, vol. , pp. - . https://doi.org/ . /j.jpsychires. . . digital object identifier (doi): . /j.jpsychires. . . link: link to publication record in edinburgh research explorer document version: peer reviewed version published in: journal of psychiatric research general rights copyright for the publications made accessible via the edinburgh research explorer is retained by the author(s) and / or other copyright owners and it is a condition of accessing these publications that users recognise and abide by the legal requirements associated with these rights. take down policy the university of edinburgh has made every reasonable effort to ensure that edinburgh research explorer content complies with uk legislation. if you believe that the public display of this file breaches copyright please contact openaccess@ed.ac.uk providing details, and we will remove access to the work immediately and investigate your claim. download date: . apr. https://doi.org/ . /j.jpsychires. . . https://doi.org/ . /j.jpsychires. . . https://www.research.ed.ac.uk/portal/en/publications/animalassisted-therapy-for-schizophrenia-and-related-disorders( ee bf-e - - b e- d a ).html title: animal-assisted therapy for schizophrenia and related disorders: a systematic review authors: emma l hawkins emma.hawkins@ed.ac.uk roxanne d hawkins roxanne.hawkins@uws.ac.uk martin dennis martin.dennis@ed.ac.uk joanne m williams jo.williams@ed.ac.uk stephen m lawrie s.lawrie@ed.ac.uk division of psychiatry, university of edinburgh, edinburgh, uk school of media, culture, and society, university of west scotland, glasgow, uk centre for clinical brain sciences, university of edinburgh, edinburgh, uk school of health in social science, university of edinburgh, edinburgh, uk correspondence: emma l hawkins, mres, doctoral researcher, division of psychiatry, university of edinburgh, edinburgh, eh hf, uk. email: emma.hawkins@ed.ac.uk. phone: mailto:emma.hawkins@ed.ac.uk mailto:roxanne.hawkins@uws.ac.uk mailto:martin.dennis@ed.ac.uk mailto:jo.williams@ed.ac.uk mailto:s.lawrie@ed.ac.uk mailto:emma.hawkins@ed.ac.uk abstract: animal-assisted therapy (aat) is increasingly researched as a potential treatment for physical and mental illness, including schizophrenia. the aim of the current paper is to systematically review randomised controlled trials (rcts) to assess the effectiveness of aat for schizophrenia and related disorders. we searched pubmed, psycinfo, cinahl, embase, the cochrane library, cab abstracts, and web of science for rcts of aat for schizophrenia and related disorders. primary outcomes were mental state and behaviour, clinical global response, and quality of life and wellbeing. studies were eligible if they were rcts that had compared aat, or other animal-assisted intervention, to any control group using any participants with a clinical diagnosis of schizophrenia (or related disorder), regardless of age, gender, setting, or severity and duration of illness. seven studies were identified for the review. meta-analysis was not possible due to heterogeneity of studies, including marked differences in outcome measures and interventions. five out of seven studies included symptoms as an outcome measure, with one reporting improvements in negative symptoms and one study reporting improvements in positive and emotional symptoms. the remaining studies reported no significant effects of aat. three studies included quality of life as an outcome measure but did not find any significant effects. two studies did, however, report improvements in various measures of self-view. the use of aat for schizophrenia remains inconclusive and there is currently not enough evidence to draw any firm conclusions due to heterogeneity of studies, risk of bias, and small samples. rigorous, large-scale rcts are needed to assess the true impact of aat on schizophrenia. key words: aat, animal-assisted intervention, randomised controlled trial, negative symptoms, self-view introduction schizophrenia is typically a severe illness that is treated with antipsychotic medication, but outcomes are often poor, with a meta-analysis finding a recovery rate of only . % meaning that only approximately in individuals met the criteria for recovery (jääskeläinen et al., ). antipsychotic drugs are largely effective for positive symptoms, but they have lower efficacy for negative symptoms (leucht & davis, ). psychotherapies are often used in conjunction with antipsychotic medication. examples of psychotherapies for schizophrenia include cognitive behavioural therapy (cbt), family therapy, and arts therapies. results from cognitive behavioural therapies have been mixed, particularly over time, with one meta-analysis finding that older studies found stronger treatment effects than more recent studies (velthorst et al., ). a recent cochrane review also failed to find any evidence for the effectiveness of cbt over other psychosocial therapies for schizophrenia, including family therapy, supportive therapy, and other talking therapies (jones et al., ). there is limited evidence for the use of social skills training to improve social skills in schizophrenia patients (almerie et al., ), limited evidence for the use of family therapies in reducing the number of relapse events and hospitalizations of schizophrenia patients (pharoah et al., ), and limited evidence for the use of art therapies in reducing negative symptoms (as measured using the scale for the assessment of negative symptoms (sans); ruddy & milnes, ). it is therefore important that other alternative treatments and adjuncts are developed to improve outcomes in the management of schizophrenia. recently, there has been a rapid increase in the use of animal-assisted therapies for a wide range of mental and physical illnesses, including schizophrenia. however, evidence for the effectiveness of animal-assisted therapies for schizophrenia remains unclear. pet partners (formerly delta society) defines animal-assisted therapy (aat) as ‘a goal-oriented, planned, structured, and documented therapeutic intervention directed by health and human service providers as part of their profession’ (pet partners, ). this review will also include animal-assisted activities (aaa), which pet partners defines as ‘opportunities for motivational, educational, and/or recreational benefits to enhance quality of life…delivered by a specially trained professional, paraprofessional, and/or volunteer,’ with an animal that ‘meets specific criteria for suitability.’ animal-assisted therapy is a more structured intervention than animal-assisted activities, with a greater focus on improvements in functioning, which are documented and evaluated throughout the process. pet therapy is a broader term that includes aat and aaa. the use of animals in therapy was first popularised during the ’s (levinson & mallon, ). animals have since been incorporated into treatments for a number of illnesses including heart disease, stroke, depression, cancer, and dementia and aat is typically used to promote improvements in emotional, social support, cognitive, and physical functioning. animal-assisted therapy is typically used as an adjunct to other treatments and interventions (nimer & lundahl, ). studies evaluating aat have shown mixed results. some studies have shown promising results, including lower systolic pulmonary artery pressure, lower neurohormone levels, and lower anxiety in heart failure patients (cole et al., ), improvements in quality of life and mental health in stroke patients (beinotti et al. ( ), reduction in symptoms of depression (antonioli & reveley, ), and improved global functioning in adolescents with acute mental disorders (stefanini et al., ). however, some studies have failed to find any significant effects of animal- assisted therapy. for example, studies have found no improvement to quality of life, gross motor function, and health in children with cerebral palsy (davis et al., ), no improvement in mood or perceived health in cancer patients (johnson et al., ), and no improvement in self-care functioning, disoriented behaviour, depressed or anxious mood, irritable behaviour, or withdrawn behaviour in geriatric psychiatry patients (zisselman et al., ). animal-assisted therapy may be useful in the treatment of schizophrenia and related disorders when used as an adjunct to standard treatment for a number of reasons. schizophrenia is characterized by positive and negative symptoms. positive symptoms are those that are added to normal human experience and negative symptoms are those that are taken away from normal human experience. animal-assisted therapy may be particularly useful in targeting negative symptoms. negative symptoms that could be targeted by aat include blunted affect, emotional withdrawal, poor rapport, passive/apathetic social withdrawal, and lack of spontaneity and flow of conversation. given that two of the targets of aat are to improve social and emotional functioning, it could be a valuable tool in schizophrenia treatment. there are a number of mechanisms by which animals may improve symptoms and functioning in schizophrenia. oxytocin is one such mechanism. administration of intranasal oxytocin is associated with a reduction of symptoms (as measured by the positive and negative symptoms scale (panss)) and improvements in social cognition in schizophrenia patients (pedersen et al., ). interacting with an animal has been shown to increase oxytocin levels in humans (odendaal & mientjes, ), and so could improve symptoms and social functioning through oxytocin release. another mechanism is the role of the animal as a social catalyst to increase social interactions with others (mcnicholas & collis, ). animal-assisted therapy has been shown to increase verbal interactions between nursing home residents (fick, ), and increase initiation and participation in longer conversations (bernstein et al., ). animal-assisted therapy could improve motivation in patients to attend and participate in therapy sessions (holcomb & meacham, ). this is particularly important given the high rates of disengagement (up to one third) from care among individuals with serious mental illness (kreyenbuhl et al., ). animals have further been shown to improve rapport between patients and professionals with substance abuse patients rating the therapeutic alliance with their therapist as more positive after taking part in animal-assisted therapy (wesley et al., ). this may be because of the animal’s role as a non-judgemental and accepting presence in therapy sessions (friesen, ). animal-assisted therapy has been associated with a number of improvements in emotional functioning. animal-assisted therapy is associated with moderate improvements in emotional wellbeing (nimer & lundahl, ), increased expression of emotions in children with acute mental disorders (stefanini et al., ), and animal-assisted activities have been associated with increases in positive emotions in patients with alzheimer’s (mossello et al., ). while the use of aat in the treatment of schizophrenia has received increased attention, it is important at this stage to thoroughly review both published and non- published studies to assess the effectiveness of aat for schizophrenia, to assess the quality of the methods used, and guide future research. we aimed to systematically review evidence from randomised controlled trials to assess the effectiveness of animal-assisted therapy, compared to any control, for the treatment of schizophrenia and related disorders. a further aim of the current review was to assess outcomes relating to the feasibility and potential barriers of providing aat for schizophrenia patients, and to make recommendations for future research. methods the systematic review was conducted following prisma guidelines (moher et al., ). meta-analysis was not possible due to heterogeneity, with marked differences in outcome measures and interventions. search strategy and selection criteria searches were carried out in the following electronic databases covering all dates up to th september : pubmed, psycinfo, cinahl, embase, the cochrane library (trials database), cab abstracts, web of science. the search strategy for embase is provided in table . search terms for animal-assisted therapy were formulated by adapting a comprehensive search strategy used in another systematic review of animal-assisted interventions (aais; o'haire et al., ). hand searches of reference lists and citation tracking, using google scholar and web of science, were conducted for the final list of studies. an updated search was carried out on th august , but no additional studies were identified. [table ] reference manager software (endnote x . ) was used to collate articles and to remove duplicates. title and abstract screening was carried out by one reviewer (eh). full text articles were then retrieved for the remaining list of studies and full-text screening was carried out independently by two reviewers (eh and rh), with disagreements being noted and resolved through discussion or were further discussed with sl where an agreement could not be reached. studies were eligible to be included in the review if they were randomised controlled trials that had compared animal-assisted therapy, or other animal-assisted intervention, to a control group using any participants with a clinical diagnosis of schizophrenia or related disorder, including schizophreniform disorder and schizo-affective disorder, regardless of age, gender, setting, or severity and duration of illness. only studies reported in the english language were considered for the review. we decided to include all schizophrenia-related disorders for the sake of inclusivity due to the limited amount of research in this area. outcomes primary outcomes were mental state and behaviour (particularly changes in positive and negative symptoms), clinical global response, and quality of life and wellbeing as measured using any relevant scale, such as the quality of life scale (qls; heinrichs et al., ) or the euroqol five dimensions questionnaire (eq- d; euroqol, ). secondary outcomes were service use (any relevant scale, such as the service engagement scale (ses; tait et al., ), social functioning (any relevant scale such as the index of social engagement (ise; mor et al., ), social functioning scale (sfs; birchwood et al., ), assessment of interpersonal problem solving skills (aipss; donahoe et al., ), living skills profile (lsp; rosen et al., ), or behavioural observation of social functioning), medication, general functioning, physical health/activity, activities of daily living (adl), and adverse effects (such as phobias, allergies, injury, suicide, or other cause of mortality). data extraction and risk of bias assessment data were extracted independently by two reviewers (eh and rh) using data extraction forms that were piloted on a limited selection of articles prior to conducting the full data extraction. data were extracted for the following: diagnosis and diagnostic criteria, severity of illness, current treatment, sample size, gender, age, type of intervention, control condition, duration of treatment, length and frequency of treatment, animal/s used, outcomes, and key findings. data are presented in table . the final selection of articles were independently assessed for risk of bias by two reviewers (eh and rh) using the cochrane risk of bias tool (higgins et al., ). consensus was reached through discussion or was further discussed with sl where an agreement could not be reached. data from the risk of bias assessment were input into review manager (revman) . where the summary figure was generated. results the initial search retrieved articles (figure ). after removing duplicates there were studies for screening. records were removed after title and abstract screening. at full-text screening, a total of studies were excluded. reference lists of the remaining articles were hand searched to identify any additional studies. two further studies were identified during citation tracking, but both were excluded. this left seven studies for detailed review. full-text articles were available for six studies. the remaining study was a conference abstract. one study had an additional report. [figure ] the total number of participants randomised was . sample sizes ranged from to participants (mean . , sd . ). mean ages ranged from . years to . years (mean . , sd . ). of those that reported the gender or sex of participants, there were females and males. one study randomised participants but only provided demographic information for the participants that completed the study. reporting of sex and gender were inconsistent across the studies. two studies used the term ‘gender,’ (references), two studies used the term ‘sex,’ and one study only made reference to ‘males’ and ‘females.’ no definitions of terms were included in any of the studies. participants were recruited from hospital populations. six studies included inpatients only and one study included both inpatients and outpatients. five studies included only individuals with a diagnosis of schizophrenia. one study included multiple diagnoses with individuals with a diagnosis of schizophrenia and schizotypal disorders forming the largest diagnosis group ( . %). the remaining study included patients with a diagnosis of schizophrenia or schizoaffective disorder ( %), and patients with an affective or other disorder ( %). patients were diagnosed using dsm-iv criteria (n= ) or icd criteria (n= ). one study used chart diagnosis, and the remaining study did not report diagnostic criteria. studies were conducted in spain (n= ), taiwan (n= ), israel (n= ), norway (n= ), and in the usa (n= ). interventions included animal-assisted therapy (n= ), animal-assisted activity (aaa; n= ), and pet therapy (n= ). test conditions included aat in addition to standard treatment (n= ). detailed information was not provided for three studies. comparison conditions included standard treatment (n= ), standard treatment plus an activity from a functional program (n= ), reading and discussion of current news (n= ), and standard treatment plus a novel intervention without a therapy dog (n= ). one study included two comparison conditions, which were regular hospital care and an active control group involving social skills exercises. one study did not provide any information regarding the comparison condition. the most common animals used were dogs (n= ). other animals included cats (n= ), horses (n= ), farm animals (n= ), and hamsters (n= ). one study used both dogs and cats, and another study used both dogs and horses. of those that reported treatment lengths, treatments ranged from weeks to months. sessions lasted between minutes and hours, with session frequency ranging from one session per week to seven sessions per week. apart from the pet therapy study, sessions lasted up to hours with a frequency of either one session per week (n= ) or two sessions per week (n= ). the pet therapy study was less structured with treatment being the presence of a hamster in the participant’s room for hours each day. one study included a follow-up assessment after the end of the treatment period, which was at months. none of the studies were reviewed by an institutional animal care and use committee (iacuc). [table ] for the primary outcomes, one study found a significant improvement in negative symptoms in the treatment group, as measured using the scale for the assessment of negative symptoms (sans). another study reported a significant improvement in positive and emotional symptoms in the treatment group, but no significant difference for negative symptoms. two studies reported a significant improvement in negative symptoms within the treatment group but no significant differences in positive and negative symptom scale (panss) scores were found between the treatment and control group. one study found no significant differences in brief psychiatric rating scale (bprs) scores. there were no significant differences between treatment and control groups for quality of life, as measured using the qols-n, eq- d, and the brief world health organization quality of life assessment (whoqol-bref). one study reported a significantly lower score on the general health item of the eq- d within the treatment group at the end of the intervention. for the secondary outcomes, two studies reported no significant differences in social functioning between treatment and control groups as measured using the lsp. one of these studies reported a significant improvement in social contact within the treatment group, which was not found within the control group. however, they also found a significant worsening of non-personal social behaviour. one study reported significant improvements in total social adaptive functioning evaluation (safe) scores and in scores on the social functioning subscale in the treatment group compared to control. adverse effects were not reported in four of the included studies, and two studies reported no adverse effects. significant improvements were reported in treatment groups for self-esteem, self- determination, self-efficacy (gse), and anxiety. a significant reduction in violent incident reports was found in an equine-assisted psychotherapy (eap) treatment group. one study also reported a significant reduction in salivary cortisol following aat sessions. no significant differences were found between treatment and control groups for social support, salivary alpha-amylase as a measure of stress-relief, coping strategies, depression, intrusiveness, or other aggression measures. other outcomes of interest included adherence, animal recruitment (where animals were sourced from, e.g. from a charity such as pets as therapy, and degree of training that the animal had received), matching (between patients and animals), attrition, cost, dosage (number, duration, and frequency of sessions), and any barriers to providing aat for schizophrenia (such as ethical barriers, health and hygiene, or patient and professional attitudes towards aat). no information was provided regarding matching, cost, and barriers by any of the studies. information regarding dosage are described elsewhere and presented in table . one study reported significantly higher adherence to aat ( . %) than control ( . %). high dropout rates were reported in one of the studies, in which % of participants from the treatment group completed the study and % from the control group completed the study. dropout rates in other studies were as follows: . %, . %, %, and . %. the majority of dropouts were reported as participants withdrawing from the study prior to the end of sessions ( . %), with the remaining dropouts being those who did not attend any sessions ( . %). of those that reported sufficient information, the majority of dropouts across studies were from the treatment groups ( . %). animals were recruited from trainers, farmers, counsellors from a pet enrichment therapy (pet) program, and an animal welfare centre. animals were specially certified in two studies. in one study, although there was no official certification for therapy dogs in the country of study, physical and behavioural examinations were carried out by certified specialists. risk of bias [figure ] risk of bias was assessed using the cochrane risk of bias tool (higgins et al., ), the results of which are presented in figure . risk of bias across studies is presented in figure . six studies were judged to be of unclear risk of bias for random sequence generation due to insufficient information regarding method of randomization. the remaining study reported that participants were allocated using computer randomization and so was judged as low risk of bias. there were no statements regarding allocation concealment in any of the included studies and so were all judged as unclear risk of bias. most studies were judged to be of high risk of bias for blinding of participants and personnel due to the inability to blind individuals to the presence of an animal. while this was the case for all studies, two studies included active control groups, which may reduce the risk of bias, and so were judged to be of unclear risk of bias. one study was judged to be of unclear risk of bias due to insufficient information regarding the control condition. four studies used blind raters and so were judged as low risk of bias for blinding of outcome assessment. however, one of these studies was judged as high risk of bias for a separate outcome as staff were not blind at post-test. one study was judged as high risk of bias as only one neuropsychologist participated in the study and so could not be blinded. a low risk of bias judgement was made for a separate outcome as saliva samples were analysed by laboratory technicians who were blind to treatment. the remaining two studies were judged as unclear risk of bias due to insufficient information. one study was judged as low risk of bias for incomplete outcome data as all participants completed the study. four studies were judged as high risk of bias due to withdrawals and exclusions that may have imbalanced groups, and lack of intention-to-treat analysis and/or use of a per protocol analysis. the remaining two studies were judged as unclear risk of bias due to insufficient information. two studies were judged to be of high risk of bias for selective outcome reporting. one study stated that they would investigate physiological and psychological aspects of schizophrenia in their aims, but no physiological results were reported, nor was there any mention of physiological measures in the methods. the second study did not fully report the results for one measure, instead reporting two out of three items. the remaining studies were judged to be of unclear risk of bias as study protocols were not available to be able to make a clear judgement. other sources of bias included baseline imbalances, and funding from the affinity foundation, which promotes the benefits of pets for humans. two studies were judged to be of unclear risk of bias for other sources due to insufficient information. other sources of bias were not identified in the remaining three studies. overall, there were few low risk of bias judgements made across the studies ( out of ), with a larger number of high risk ( out of ) and unclear risk of bias judgements ( out of ). nurenberg et al. ( ) and calvo et al. ( ) had the most ‘high risk’ judgements ( out of ) while barak et al. ( ) had the most ‘low risk’ judgements ( out of ). [figure ] discussion the primary aim of the current review was to synthesise the published research to determine whether animal-assisted therapy is an effective treatment for schizophrenia based on results from randomised controlled trials. meta-analysis was not possible in the review due to heterogeneity, particularly marked differences in outcome measures and interventions. evidence for the effectiveness of animal-assisted therapy for the treatment of schizophrenia remains inconclusive and not sufficiently robust. this review identified mixed findings for the effectiveness of animal-assisted therapy for schizophrenia. improvements were found for negative symptoms, positive and emotional symptoms, and safe scores, particularly the social functioning subscale, and on a number of measures of positive self- view (self-esteem, self-efficacy, and self-determination). some within-treatment group effects were found for improvements in negative symptoms, and social contact. there was no evidence for any benefits to quality of life and some studies failed to find any improvements for symptoms from measurement using the panss or bprs. there were also no improvements found on the living skills profile (lsp), coping strategies scale, or for social support. it is important to note that because of serious flaws in the included studies and the high risk of bias and unclear bias across the studies, makes the interpretation of results impossible. this review cannot make any conclusions based on the included studies. the potential benefit of aat for negative symptoms, social difficulties, and negative self-view evident in this review are also noted in a number of observational studies. these include reports of significant reductions in symptoms, particularly negative symptoms following therapeutic riding (cerino et al., ), as well as significant improvements in hedonic tone following aat with a dog (nathans-barel et al., ). significantly increased use of leisure time following aat (nathans-barel et al., ), increased nonverbal communication (kovács et al., ), increased prosocial behaviours (marr et al., ), and increased scores on the independent living skills survey (ilss), particularly for domestic activities and health subscale scores (kovács et al., ) have also been observed. increases in measures of positive self-view have been found following therapeutic horseback riding, including increases in self-esteem (bizub et al., ; corring et al., ), sense of agency (bizub et al., ), self-confidence, and self-efficacy (corring et al., ). lack of apparent evidence for benefits to quality of life in the current review may be due to the nature of the interventions used. longer, and more frequent, interventions may be required to have a measurable impact on quality of life but it may be that aat is not an effective treatment for targeting quality of life in schizophrenia patients. results from a recent systematic review of dog-assisted interventions in health care identified improvements in quality of life in two out of three studies that included this measure (lundqvist et al., ). however, the two studies that identified improvements looked at dementia patients, and the study included in the current review (calvo et al., ) that did not show improvements, looked at schizophrenia. the worsening of non-personal social behaviour found in one study was concerning (villalta-gil et al., ). the authors noted that they did not focus on non-personal social behaviours in their intervention program (e.g. disruptive behaviours towards public objects). it is important that future studies take this into account to minimise any potential adverse effects. another factor that may influence results is the types of treatment/s patients are receiving prior to enrolling in aat. however, only one study (calvo et al., ) provided detailed information regarding the medications that patients were taking prior to aat and that all individuals were enrolled in a psychosocial rehabilitation programme. berget et al. ( , ) provided general information regarding medication (table ) but no information regarding other treatment/s. due to the lack of information, it is not possible to determine whether current treatments had any effect on outcomes. severity and duration of illness may also be an important factor in outcomes. however, there was heterogeneity in the reporting on duration and severity. some studies reported years spent in long term care (barak et al., ; berget et al., , ; nurenberg et al., ; villalta-gil et al., ), while other reported years since onset of illness (calvo et al., ; chu et al., ). the remaining study only stated that cases of illness were chronic (kung et al., ). again, it is difficult to determine the impact of duration and severity of illness on outcomes. future studies should provide complete reporting so that conclusions can be reached. the secondary aim of this review was to assess feasibility and potential barriers of providing aat for schizophrenia patients, but little information was available in the included studies. no information was provided regarding costs of aat, barriers faced by therapists or researchers, or matching of participants to animals. without this information, it is not possible to adequately assess feasibility and future research should address these outcomes to improve replicability and expansion of the use of aat. adherence was reported by one study, which showed significantly higher adherence to aat compared to control. the review highlights some concerns regarding dropout rates from interventions. of the studies that reported dropout rates, the majority noted higher dropout rates for intervention groups compared to control groups. reasons given for dropouts included fear of dogs, discharge from hospital, risk of harm to animals involved, and little interest in included species and work involved. future research should address these issues and develop strategies to improve adherence, attrition, patients’ experiences of aat, and take steps to ensure animal welfare. it is concerning that only one study made any mention of animal welfare (calvo et al, ) and none of the studies were reviewed by an institutional animal care and use committee (iacuc). calvo et al. taught participants the concepts of animal welfare, assessed the welfare of the dogs before, during, and after the program, and excluded participants that exhibited behaviours that may have compromised the welfare of the dogs. it is vital that more studies address animal welfare sufficiently. compromised animal welfare not only risks the health and wellbeing of the animal involved, but could also lead to less effective treatment if the animal is unable to perform well as a therapy animal. dogs that are rated as more stressed by their owners and veterinarians are less likely to participate in social contact with an unfamiliar person (lind et al., ). risks to animals taking part in animal-assisted interventions have been noted in some studies, including the potential for mistreatment (hatch, ), deliberate attempts to injure the animal, lethargy, and symptoms of depression (heimlich, ). future studies and animal-assisted intervention programmes should place a greater emphasis on animal welfare, as well as human wellbeing, taking a ‘one welfare’ approach to recognise the interconnectedness of animal welfare, human wellbeing, and the environment (pinillos et al., ). there are several guidelines available that provide information on animal welfare during animal-assisted interventions. the international association of human-animal interaction organisations (iahaio) published the white paper: definitions for animal assisted intervention and guidelines for wellness of animals involved in (jegatheesan et al., ). due to limitations in the included studies, there is still a lack of evidence for the effectiveness of aat for schizophrenia and results should be treated with caution. the limitations of the included studies are common across much of the literature and have been discussed at length in previous reviews (may et al., ; crossman, ; kazdin, ). limitations identified in this review are presented and discussed in table with recommendations for future research. the number of high risk and unclear risk of bias decisions are of particular concern. the study that identified improvements in negative symptoms had unclear risk of bias for out of decisions (kung et al., ). the study that identified improvements in social functioning had unclear risk of bias for out of decisions (barak et al., ). the study that identified improvements in self-efficacy had unclear risk of bias for out of decisions and high risk of bias for out of decisions (berget et al., , ). the study that identified improvements in self-esteem and self- efficacy had unclear risk of bias for out of decisions and high risk of bias for out of decisions (chu et al., ). methodological issues (table ) combined with high and unclear risk of bias make the findings from the majority of studies included in this review uninterpretable. it is vital that future studies address these issues and follow the consort guidelines to ensure accurate reporting of randomised controlled trials (schulz et al., ). the poor state of the research field was first highlighted in a review in (beck & katcher, ). thirty-four years later and some of the same common limitations are still being found across studies. whilst some aspects of the research have improved over time (may et al., ), future research must address limitations to allow firm conclusions regarding the efficacy of aat as a treatment for schizophrenia and to allow for changes to be made to current policy and practice. rigorous, large-scale randomised controlled trials with long-term follow-up are needed to determine the true impacts of aat for schizophrenia. [table ] this review had a number of limitations: ) we included studies of lower quality in order to be inclusive, ) studies were limited to those reported in the english language due to a lack of resources, ) we were unable to conduct a meta-analysis due to heterogeneity of studies. strengths of this review include: ) restriction to randomised controlled trials to assess the best available evidence, ) inclusion criteria were not restricted to published articles from peer-reviewed journals, ) inclusive and comprehensive search strategy ) use of the cochrane tool for assessing risk of bias. we used the cochrane tool as it has been argued to be more reliable than subjective quality assessments (higgins et al., ). as far as we are aware, this tool has not been used in other systematic reviews of animal-assisted interventions, although one study did use the cochrane’s criteria list (kamioka et al., ). prior to this review, we identified only one other systematic review on aat that included unpublished studies (germain et al., ). only one systematic review was identified that examined animal-assisted interventions and schizophrenia (jormfeldt & carlsson, ). however, this review was limited to equine-assisted interventions, peer-reviewed papers, papers published between and , and studies that included participants aged - years. in conclusion, based on the results from this review, it would be premature at this point to make any changes to patient care and policy to incorporate animals into therapy. rigorous, large-scale randomised-controlled trials with long-term follow-up are first needed to determine the true impacts of aat for schizophrenia. there is some promise for the treatment of negative symptoms and negative self-view but results remain inconclusive. it is important to highlight the methodological flaws and predominantly high and unclear risk of bias of the included studies. because of this, it is not possible to confirm whether aat is or is not effective in treating schizophrenia based on the included studies. given this, the need for the further development of negative symptom interventions (elis et al., ), and the substantial burden of disease (charlson et al., ), further research is required to determine the true impact of aat on schizophrenia. acknowledgements we thank marshall dozier for support and advice during the development of the protocol and literature search. contributors all authors were involved in the design of the study and development of the protocol. eh and rh assessed the studies, extracted the data, and conducted the risk of bias assessment. eh wrote the first draft with input and comments from rh and sl. all authors provided comments on and approved the final draft. funding emma hawkins was funded by a phd studentship ( - ) from the division of psychiatry, university of edinburgh. references almerie, m.q., al marhi, m.o., jawoosh, m., alsabbagh, m., matar, h.e., maayan, n., bergman, h., . social skills programmes for schizophrenia. cochrane database of systematic reviews. 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( ), - . figure legends figure : prisma flow diagram of the selection of studies for inclusion in the systematic review to assess the effectiveness of aat for schizophrenia. figure : 'risk of bias' summary: review authors' judgements about each risk of bias item for each included study. the risk of bias assessment was conducted by two independent reviews with agreements made through further discussion. + represents low risk of bias - represents high risk of bias ? represents unclear risk of bias figure : risk of bias graph: review authors' judgements about each risk of bias item presented as percentages across all included studies. 	introduction 	methods 	results 	discussion return to play (rtp) guidelines have been developed to assist coaching staff with decision making when their players sustain concussions university of alberta exploring minor hockey players’ knowledge about and attitudes toward concussion: implications for prevention by andrea theresa perra a thesis submitted to the faculty of graduate studies and research in partial fulfillment of the requirements for the degree of master of education in counselling psychology department of educational psychology ©andrea theresa perra fall edmonton, alberta permission is hereby granted to the university of alberta libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. where the thesis is converted to, or otherwise made available in digital form, the university of alberta will advise potential users of the thesis of these terms. the author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission. dedications this thesis is first and foremost dedicated to my family. without their unwavering and unconditional support, compassion, and encouragement my journey through graduate school would not have been possible. i recognize and immensely appreciate the sacrifices you all have made so that i could pursue my dreams. my loving sister allie, you have supported me in more ways than you’ll ever know. you’ve been the best roommate and ‘landlord’ and have given so much of yourself without hesitation. my beagle, abby, has brought me such joy and needed pet therapy during stressful periods, and has reminding me to literally stop and smell the flowers along the way and to make time to play. my dearest friends have stood by me and believed in me during my moments of doubt and have reminded me to celebrate successes, i thank-you all tremendously. to my cohort of peers, who have paved the path ahead of me or have walked alongside me i appreciate all of your insights and motivating words. to my best friend eric, i owe so much to you for your positive outlook, confidence in me, and for helping me to be healthier and happier. furthermore, my research is also dedicated to those injured in sports or other circumstances. through my own prolonged injury recovery i can appreciate the challenges of trying to meet daily life requirements and do what you love despite pain or disruptive symptoms. this thesis is five chapters of research, but more than that it signifies one chapter of my life coming to a close and the opening of all the opportunities i will have to give back and to continue to develop professionally and personally. abstract concussions in ice hockey are a serious public health concern, however too many athletes fail to recognize or report their symptoms. a survey was developed to assess minor hockey players’ concussion knowledge, attitudes, and reporting behaviour, as little is known from their perspective. male and female pee wee, bantam, and midget level players (n = ) and a comparison group of non- hockey players (n = ) completed the questionnaire. players had foundational knowledge about concussions, however over half underestimated the prevalence and over % were unaware of return to play (rtp) protocols. although nearly all players knew what they “should” do when concussed, % did not follow recommendations. players reported more concern and appreciation of the seriousness of concussion compared to non-players, but they tended to minimize their vulnerability. the most common and helpful information sources were parents, doctors, and coaches, therefore knowledge translation efforts should target theses audiences. acknowledgements i would sincerely like to thank my supervisor dr. martin mrazik for his patience and encouragement, and for motivating me to persevere through challenges. i am grateful to have had the opportunity to learn such valuable clinical and research skills from his vast knowledge and experience. i would also like to thank my committee members, dr. klassen and dr. naidu, for their unique perspectives, thought provoking feedback, and valuable contributions next, i would like to extend my gratitude to the executive committees of the sherwood park kings athletic club and the st. matthews sports and athletic club for supporting this project. a special thank-you to steve french and all the wonderful managers and coaches who assisted with the recruitment of participants, collection of consent, and the facilitation of my visits to the hockey arenas. i would like to thank brea malacad (st. theresa catholic school) for her tremendous efforts with recruitment of participants, collection of consent, and for the coordination with teachers and the warm accommodation of my visit. i would also like to acknowledge dan aloisio’s (archbishop jordan high school) recruitment efforts. last but not least, a special thanks to my “pilots” remee, rorie, joshua, and justin and all the participants who were such great ‘sports’ by putting forth care and effort when filling out the surveys. it was such a joy to meet the youth and the cheers i received when i told them they were helping me to finish my master’s degree ignited my enthusiasm for this project. table of contents chapter one - introduction ...................................................................................... the problem at hand ....................................................................................... rationale ........................................................................................................... underlying assumptions ................................................................................. the present study ............................................................................................ chapter two – literature review ........................................................................... what is a concussion? .................................................................................... history and definition .............................................................................. incidence ................................................................................................ symptoms .............................................................................................. risk for youth ............................................................................................... specific risk factors in minor hockey .................................................... current recommendations for managing concussions ........................... knowledge of mtbi/concussion ................................................................. knowledge sources ....................................................................................... attitudes ......................................................................................................... reporting behaviour .................................................................................... preventative education .................................................................................. effective ways of educating young adolescents ................................... current concussion education programs ................................................ research objectives ...................................................................................... objective : knowledge, attitudes, and behaviours ................................ objective : sources of knowledge ........................................................ chapter three – methods ....................................................................................... participants .................................................................................................... hockey players ....................................................................................... non-hockey players ............................................................................... ethical considerations ................................................................................... instrumentation .............................................................................................. concussion questionnaire ...................................................................... pilot testing and validity ......................................................................... sampling and data collection procedures .................................................... hockey players. ...................................................................................... non-hockey players ............................................................................... survey administration ............................................................................ overview of analysis .................................................................................... chapter four – results .......................................................................................... sample characteristics ................................................................................... hockey players ........................................................................................ non-hockey players ................................................................................ concussion history group comparisons .......................................................... objective : knowledge, attitudes, and behaviours ..................................... knowledge .............................................................................................. attitudes and symptom reporting behaviours ......................................... objective : sources of knowledge .............................................................. sources of information ............................................................................ helpfulness of sources ............................................................................ supplementary analysis ............................................................................... knowledge of signs and symptoms. ....................................................... reasons for underreporting of concussion .............................................. chapter five – discussion .................................................................................... summary and discussion of findings: objective ...................................... knowledge .............................................................................................. attitudes .................................................................................................. symptoms reporting behaviours .............................................................. summary and discussion of findings: objective . ....................................... sources .................................................................................................... helpfulness of sources. ........................................................................... implications for research and practice ........................................................... research implications ............................................................................. practical applications .............................................................................. limitations and considerations for replication ............................................. future directions ............................................................................................ conclusions ..................................................................................................... references ........................................................................................................... appendix a parent information letter and consent ........................................... appendix b participant assent ............................................................................ appendix c athlete concussion questionnaire .................................................. appendix d concussion questionnaire ............................................................... tables table : participant demographic variables by participant group ............. table : frequency and percentage knowledge by player status and age level ............................................................................................... table : frequency and percentage of attitude by participant group ........ table : frequency and percentage of symptom reporting behaviour by participant group ........................................................................... table : other sources of information listed by participants .................... table : frequency and percentage of most helpful sources ..................... table : frequency and percentage of reasons for non-reporting by participant group ............................................................................ figures figure : percentage of players and non-players who have acquired information from various sources .................................................. figure : helpfulness ratings of information sources by minor hockey players .............................................................................................. figure : percentage of reported concussion symptoms by hockey players and non-players .............................................................................. figure : percentage of reported concussion symptoms by age level of male hockey players ....................................................................... chapter one - introduction mild traumatic brain injury (mtbi) is a topic that has stimulated a substantial amount of clinical and research interest in recent years. the world health organization’s (who) collaborative task force on mtbi reports a high population incidence rate of mtbi at above / , population per year (cassidy et al., ). mtbi accounts for approximately - % of treated traumatic brain injury events (cassidy et al., ) and represents a serious public health concern due to accompanying morbidity and even tragic cases of mortality (echlin, ; wiebe, comstock, & nance, ). concussion is considered a subset of mtbi, which is caused by direct physical impact to the head or from indirect forces exerted on the brain causing it to move within the skull (wiebe et al., ). even subtle injury to the brain can disrupt the normal functioning and elicit an array of physical, cognitive, sensory, and emotional symptoms (coghlin, myles, & howitt, ; wiebe et al., ). furthermore, once injured the brain may be more likely to become re-injured (cusimano, chipman, volpe, & donnelly, ). these consequences can severely disrupt an individual’s activities, lead to prolonged health problems, and can be cumulative in nature with repeated concussions (collins, et al., ; guskiewicz et al., ). children and adolescents are at a particularly high risk for sustaining concussions. in fact, concussions represent the most common cause for hospitalization of young people with % of cases related to sports injury (anstey et al., ; browne & lam, ). recent research suggests that children have different physiological responses than older adolescents or adults with mtbi and can experience more cognitive disruption which can have a secondary negative impact on their educational and social attainment (mccrory, collie, anderson, & davis, ). concussions are one of the most commonly occurring athletic injuries in contact sports (coghlin et al., ). in canada, ice-hockey accounts for a large portion of sport-concussions (cusimano et al., ; echlin, ). a recent study found that the risk of concussion for children between the ages of to was times greater for organized sport than recreational activities (browne & lam, ) and pediatric athletes (under ) account for the majority of organized and contact sport participants (buzzini & guskiewicz, ). with over , participants in minor hockey across canada the potential for concussion injuries in young athletes is concerning (coghlin et al., ). the problem at hand wiebe et al. ( ) have outlined barriers to optimal care for concussion. these include a lack of awareness that a concussion has occurred (by the patient, parent, coach, or clinician), and lack of appreciation of the clinical importance of the issue (i.e. the long-term consequences) (p. ). for these reasons there is a problem with the identification and reporting of concussions. altering the perspectives and behaviours of sports participants is not an easy task considering sports ethics norms and the unique performance pressures faced by athletes. one challenge is the prominent “macho ideal” in sports, which encourages athletes to play through pain or to “shake it off” if they experience an injury such as a concussion (young, white, & mcteer, ). fear of being benched or sheer motivation to win or advance can lead players to mask or deny injury symptoms (cusimano et al., ; mccrea, hammeke, olsen, leo, & guskiewicz, ). this places athletes at a much greater risk for re-injury and/or exacerbation of their symptoms if they return to play before recover is complete (cohen, gioia, atabaki, & teach, ). echlin ( ) notes that widespread education is required in order to bring about culture change regarding concussion. misunderstandings regarding the causes, symptoms, and sequelae of mtbi have been well cited in the literature. trends reveal that coaches, parents, and players demonstrate greater general knowledge compared to the lay population (mulhern & mcmillan, ). recent research indicates that athletes and coaching staff are beginning to hold fewer misconceptions about mtbi than previously reported (guilmette, malia, & mcquiggan, ), however serious deficits in knowledge continue to exist and sports concussions continue to occur with high and perhaps even increasing frequency (cusimano et al., ). the danger inherent with misconceptions and lack of knowledge is the potential for worsened consequences if a concussion is not recognized, reported, and treated appropriately (cohen et al., ). rationale the majority of research regarding knowledge and concussion symptom reporting has focused on college and adult athlete samples; however, there is a dearth of information from the perspectives of young players (carroll et al. ). the decreased likelihood that young athletes have access to sports medicine resources and professionals at sporting events heightens the risk for under recognition of concussions in this population, thus researchers argue that there is greater reliance on pediatric athlete self-report of symptoms than for adults (cohen et al., ; meehan, taylor, & proctor, ). initial studies that surveyed college athletes suggested that these individuals are often not aware of the problems that could occur as a result of a concussion (kaut, depompei, kerr, & congeni, ). college level athletes have had many years of experience functioning in sporting environments and have greater exposure to knowledge and education about injuries compared to younger athletes. thus, if college athletes presented with gaps in their knowledge and understanding, the concern is that young populations would be at greater risk of making poorly informed decisions. to date, very few studies have explored the issue of what sources of information influence young athletes’ knowledge of concussions and who would be most likely to influence their knowledge level. there have been many advances in what is known about concussions and their consequences in the literature. however, knowledge gaps and the continued problems of concussion under reporting and recognition are evidence that important information is not reaching target populations or having the desired influence on attitudes and behaviours (woolf, ). this signifies that efforts are needed to improve the knowledge translation process. knowledge translation is essentially about effectively transferring the right information or message to the target audience in the most appropriate way so that they can apply this knowledge to their decision making (provvidenza & johnston, ). in order to enhance athlete concussion recognition and reporting, several audiences and stakeholders must be targeted in order for knowledge translation to be effective (straus, tetroe, & graham, ). prior to the dissemination of information, the primary research findings must be synthesized and converted to the most understandable and relevant format for the audience. primary research findings on sports concussions in hockey, for example, are synthesized into best practice guidelines on how to assess, manage, and treat concussions. interactive education sessions are effective ways to disseminate information to physicians, in addition to online injury prevention sources and print materials (provvidenza & johnston, ). similar strategies in conjunction with peer discussion and reflective practices can transfer meaningful knowledge to coaches. coaches and physicians are key for transmitting this information to parents and athletes. materials such as information sheets that convey messages pertinent to parent and player can assist parents and coaches with this process. overall, through the current exploration of minor hockey players’ knowledge acquisition, views on concussion, and their safety practices it is hoped that this study will inform the process of transferring concussion safety messages to athletes. underlying assumptions certain assumptions underlie the formation of research questions for this study. a primary assumption is that knowledge and attitudes are relevant to concussion injury behaviour. research currently identifies that athletes have limited awareness of the symptoms and potential significance of a concussion and are likely to hold distorted perceptions that minimize the potential severity of outcomes associated with concussions. thus, these variables are important to explore and understand (wiebe et al. ) in youth sports and serve as a primary goal of this study. second is the assumption that increasing knowledge and shifting attitudes leads to safer practices. specifically increasing an athletes’ understanding of concussions and appreciation for the severity of, and personal vulnerability toward the injury will lead to preventative behaviours such as symptom recognition and reporting of injury to appropriate sources. education has been cited by many researchers as an important factor contributing to behaviour change (mclaughlin & glang, ), and improving the quality of education has been found to be correlated with improved safety practices (morrongiello et al., ). some researchers have found that knowledge may indirectly lead to positive attitudes toward safe practices, which appears to be more predictive of behaviour change (morrongiello et al., ). therefore, evaluating both of these factors is relevant and important to this study. it is assumed that the children in this sample will have access to roughly the same means of information. due to the homogeneous nature of the sample chosen (competitive minor hockey players) it is expected that the participants will have similar access to information through school and their sporting team. it is also expected that there will be limited diversity in socioeconomic status due to the high cost associated with playing competitive hockey, therefore access to media sources within the home are likely to be similar. the present study the purpose of the study is two-fold; ) to explore minor hockey athletes’ knowledge about and their attitudes/ beliefs toward sports-concussions, and ) to identify where young hockey players are getting their information about concussions and what sources have been the most helpful. a description of current knowledge levels and sources, attitudes toward concussion, and symptom reporting practices will be acquired by administering surveys to a sample of minor hockey players. player results will also be compared to those of a non-player sample. a review of literature regarding the recognition and management of sports concussions and implications with pediatric populations will follow in chapter two. trends in research regarding knowledge about and attitudes toward concussion, as well as athlete symptom reporting behaviours will be presented. the review will conclude with current views on prevention and education of this injury. details regarding the methods of data collection (chapter three) and quantitative statistical analysis of the data will then be presented (chapter four). finally the results will be analyzed (chapter five) and the document will conclude with a discussion of the limitations of the present study and future implications. chapter two – literature review this chapter will provide an overview of the definition of concussion, the symptoms and brief guidelines of assessment and management, the incidence, and specific considerations for children and for hockey players. the following is a review of the literature on concussion knowledge, sources of this knowledge, attitudes, and symptom reporting behaviour practices among athletes. the final section of the literature review will explore current concussion education and prevention programs in canada and how to effectively educate adolescents. the rationale leading to the research objectives and hypotheses will conclude the chapter. what is a concussion? history and definition. there has been a lack of consistency in the mtbi literature regarding the use and definition of key terms (yeates, ). terms such as minor closed-head injury/minor head injury, mild traumatic brain injury, and concussion have been used to describe this class of injury. the use of multiple terms is problematic as they suggest different meanings with respect to mechanism of injury, different degrees of severity, and can imply that a concussion is not a brain injury (mckinlay, bishop, & mclellan., ; weber & edwards, ). there has likewise been a lack of agreement among clinicians with respect to the best guidelines used for assessment and management of concussions (bodin, yeates, & klamar, ). the incongruence among definitions has led to inaccuracies in incidence and prevalence estimates which subsequently have impeded the ability to compare findings across research studies (mckinlay et al., ; yeates, ). the variation in definitions is also confusing for the general public who may develop misconceptions, have difficulty recognizing if their injury is severe enough to warrant medical advice, and develop different expectations of their recovery (dematteo et al., ; weber & edwards, ). traditionally, concussions have been viewed as less serious than mtbi, even by clinicians, and self-reports of the injury vary depending on what terms are used. for example, asking athletes if they have ever suffered a “ding” or had their “bell-rung” results in more reports of injury than if the term concussion is used. attempts have been made to clarify the definition of concussion over the years by the american congress of rehabilitation medicine, the congress of neurological surgeons the world health organization, the international classification of diseases, the canadian academy of sport medicine, and the concussion in sport group (bodin et al, ; guskiewicz et al., ; kirkwood, yeates, & wilson, ) which adds to the confusion. the world health organization collaborating centre task force on mtbi provided this definition: “mtbi is an acute brain injury resulting from mechanical energy to the head from external physical forces.” (carroll et al., , p. ). concussions are considered to be a subset of mtbi and are typically referred to within the context of sports medicine (cohen et al., ). the recognition of the need for a unanimous description of concussion led to the development of a definition through the consensus of international leaders in the field of head trauma. the following definition was culminated at the rd international conference on concussion in sport, held in zurich in november, . concussion is defined as a complex pathophysiological process affecting the brain, induced by traumatic biomechanical forces. several common features that incorporate clinical, pathologic and biomechanical injury constructs that may be utilized in defining the nature of a concussive head injury include: . concussion may be caused either by a direct blow to the head, face or neck or a blow elsewhere on the body with an ‘‘impulsive’’ force transmitted to the head. . concussion typically results in the rapid onset of short-lived impairment of neurologic function that resolves spontaneously. . concussion may result in neuropathological changes but the acute clinical symptoms largely reflect a functional disturbance rather than a structural injury. . concussion results in a graded set of clinical symptoms that may or may not involve loss of consciousness. resolution of the clinical and cognitive symptoms typically follows a sequential course. in a small percentage of cases, however, post-concussive symptoms may be prolonged. . no abnormality on standard structural neuroimaging studies is seen in concussion. (mccrory et al., , p. ) for the purposes of this paper, the terms ‘concussion’ and ‘sports- concussion’ will be used interchangeably and will follow the definition laid out by mccrory et al. ( ) as above. incidence. concussions are one of the most commonly occurring injuries among children and adolescents in leisure and sporting activities, with over % of pediatric concussions occurring in sports (browne & lam, ). concussions occur more frequently in contact sports with the highest prevalence in sports such as ice hockey, football, rugby, and fighting sports (mckinlay et al., ). ice hockey players are highly susceptible due to high speeds, the contact between players, pucks, sticks, and hard surfaces, body checking, illegal on-ice behaviour, and the aggressive contact during fights (echlin, ; williamson & goodman, ). ice hockey is a sport played by numerous males and females of all ages at various skill levels throughout north america, europe, and countries of the former soviet union (smith et al., ). a recent surveillance study from to of emergency department (ed) visits by children aged – years old with concussions in the us found that the rates of concussion were highest for football and ice hockey players when the number of participants enrolled in these sports were taken in to account (bakhos, lockhart, myers & linakis, ). a literature review by honey ( ) on brain injuries in ice hockey revealed a trend of increasing incidence rates with increased level of play. furthermore, most concussions in ice hockey occur during games rather than practices. the investigation of female hockey player concussions has been limited; however, initial studies suggest that females may sustain more concussions, and may be more likely to self-report injury and symptoms (dick, ; schneider, emery, kang, schneider, & meeuwisse, ). the rates of concussion injury in hockey for those – years of age have been estimated at . concussions per player-hours. university and elite amateur athletes experienced higher rates with . and . concussions per player hours, respectively (honey, ). incidence has been estimated to be as high as % of players per team each year (tator, ). with over half a million youth involved in minor hockey in canada, there is a significant health risk for young athletes in canada (coghlin et al., ). furthermore, with the incidence rates of concussion likely being underestimates of actual occurrences due to under- reporting by athletes (kaut et al., ; mccrea et al., ; sye, sullivan, & mccrory, ) concussions can pose a substantive burden on the current health care system. symptoms. there are common signs and symptoms associated with concussions, however they are not exclusively seen in concussed individuals (carroll et al., ) and are mostly not visible, therefore not easily recognized and identified (echlin, ). the onset of symptoms can occur right away or signs of injury can be delayed for days or even weeks (mooney, speed, & sheppard, ). the recovery of these symptoms can also be variable from several minutes to several days, weeks, months, or even longer (dekruijk et al., ). the majority of individuals with concussion injuries will recover on their own over a – week time period (mccrory et al., ). given that the brain is responsible for controlling all aspects of our daily functioning, it is not surprising that insult to this important organ can cause disruption in physiological, cognitive, and emotional realms. the most common physical symptoms include headache, dizziness, and fatigue (cunningham, brison, & pickett, ). difficulty with vision, balance problems, nausea, vomiting, ringing in the ears, sensitivity to light and noise, sleep disturbances, and numbness/tingling can also be experienced (cohen et al., ). loss of consciousness is an important and severe symptom, however it is not a required symptom for a concussion diagnosis and it occurs with far less frequency than is assumed. cognitive symptoms include confusion, mental fog, difficulty with attention and concentration, decreased speed of mental processing, and memory problem. emotionally a player might experience irritability, sadness, increased emotionality, and nervousness. recent evidence from a canadian study by cunningham et al. ( ) suggests that the physical symptoms tend to subside sooner, whereas emotional and cognitive symptoms persist. in some patients, cognitive symptoms began to appear over time thus monitoring symptom presentation and changes over time are important. although the general trend is that symptoms improve over short periods of time (approximately to days), a small subset of those injured will have a far more complicated outcome (yeates, ). post-concussion syndrome (pcs) refers to a constellation of somatic, cognitive, emotional, and behavioural symptoms which persist for a prolonged period. the common pcs symptom complaints are headache, dizziness, fatigue, irritability, and impaired memory and concentration (cantu, ); however, the outcomes and prevalence of pcs in children are less clear (barlow et al., ; yeates, ). regarding prognosis, the who collaborating centre task force on mtbi has indicated that post- concussive symptoms are usually short-lived in children and “appear to be largely resolved within - months of the injury” (carroll et al., , p. ). studies have indicated that the outcomes of concussions are dependent on injury characteristics as well as non-injury characteristics, such as history of prior head injury or the family and social environment (barlow et al., ; yeates, ). validity for pcs in children comes from a recent study of children who presented to an ed where . % of children with mtbi diagnoses continued to have symptoms months after injury, which could not be accounted for by other personal and non-injury factors. persistent symptoms can lead to negative physical health and psychosocial consequences for children in the long-term. the risk for long-term deficits increases for those who experience multiple concussions and there is evidence that the effects can be cumulative (guskiewicz et al., ). a study by iverson, gaetz, lovell, & collins ( ) found that high school and college athletes who had a history of three or more concussion performed significantly worse on baseline neuropsychological measures than those with – prior concussions, and they also demonstrated greater declines in their cognitive functioning after injury. few longer term studies have been conducted with children and as mentioned the variability in terms and definitions used has made comparisons and clarity on this issue difficult. risk for youth children are especially vulnerable to sustaining concussions due to the large number of children who participate in recreational and sporting activities; however, less has been published on concussions in youth below the high school level (guskiewicz et al., ; kirkwood et al., ). research that is available has demonstrated that concussions and the consequences affect pediatric and adult populations differently. as kirkwood et al. ( ) have noted it is important to understand and respond to these differences so that proper prevention and management of the injury can occur. it was initially thought that due to plasticity in the immature brain, children would have better recoveries from head trauma than adults; however, in recent years there has been mounting evidence that the developing brain is at greater risk for diffuse injury and that children and adolescents require more time to recover (grady, ). additionally, children and adolescents seem more susceptible to the life-threatening “second impact syndrome”, when a concussed athlete sustains another hit before their first concussion has resolved (cantu, ). coghlin et al. ( ) have stated that the rising incidence of tbi in hockey is a major concern for youth and exposure to mild head injury may lead to lasting effects that may not surface until the brain completes maturation. specific risk factors in minor hockey. body-checking can lead to severe bodily and head injuries and is the most common cause of all injuries in ice hockey (cusimano et al., ). there is much debate about this topic and whether body checking should be a part of minor hockey. some have argued that it is more beneficial for players to be exposed to body checking at lower levels to reduce injuries in the long run as players would learn how to properly give and receive a hit. several studies have compared across age groups and hockey divisions where body checking is introduced at younger versus older age groups and early exposure to body checking did not decrease the incidence of injuries, but rather increased the risk. a prospective study found that the risk for concussion injuries for pee wee level athletes was times greater in a hockey league where body checking was allowed at their level than in a league where body checking was not allowed (emery et al., ). additionally, a recent study found that rates of injuries to the head and brain especially increased among players after a rule change that lowered the age in which body checking was permitted at the atom division (cusimano et al., ). current recommendations for managing concussions. the symptoms can be subtle or invisible, therefore, the detection of concussion relies greatly on athlete symptom reporting and upon coaches and parents to notice observable signs of concussion (kirkwood et al., ; sullivan et al., ). most cases of concussion will not demonstrate findings on ct scans or mris as they are due to functional rather than structural injury, however several tools are available to assist with the evaluation process. postural stability is commonly assessed as balance can be disrupted within the first hours of injury (mccrory et al., ). brief sideline measures of cognitive disturbances that frequently occur after concussion have been developed to assess the immediate status of players such as the maddocks questions and the standardized assessment of concussion (sac). a clinical assessment protocol called the sport concussion assessment tool (scat ) has been developed as a guideline for coaches, trainers, or doctors to comprehensively examine athletes aged years and up in a consistent manner. the scat includes the above measures in addition to symptom checklist and observations of physical signs, a glasgow coma scale (gcs), and test of coordination. the scat can also be given at preseason for a baseline of scores. immediate post-concussion assessment and cognitive testing (impact) is a minute computer-based tool which is used with athletes of all ages to assess the neurocognitive effects of concussions (impact applications, n.d.). it measures aspects of attention, working memory, reaction time, non-verbal problem solving, as well as response variability. the test can be administered as a baseline measure, to evaluate an individual for a concussion, and to monitor status of recovery to assist with rtp decision making. more comprehensive neuropsychological assessment may be necessary supplement investigative procedures to explore the range of cognitions affected by the injury (mccrory et al., ). the safety guidelines for return to play (rtp), which are designed to optimize good outcomes for players, cannot be enacted without recognition and disclosure of possible injury. recommendations for safe rtp include accurate and timely detection of a concussion, removal from play, individualized assessment, a monitored step-wise plan for reintroducing physical and cognitive activities, and medical evaluation (mccrory et al., ; smith et al., ). complete symptom resolution and medical clearance is recommended before resuming play (cantu, ). knowledge of mtbi/concussion misinformation or having limited understanding about concussion can lead to misidentification of an injury, as well as improper assessment and management. the greatest dangers lie with an athlete continuing to play without knowing they have a head injury or if they have a poor understanding of how to properly manage it, as they can develop more severe or prolonged health consequences and increased risk for reinjury (cohen et al., ). therefore, it is important to assess the knowledge levels of sports participants (rosenbaum, ). studies regarding tbi knowledge and misconceptions levels have explored what the general public, health professionals, coaches, as well as some athlete and parent samples understand about the injury. limited knowledge and endorsement of potentially dangerous misconceptions have been found in the general public (gouvier, prestholdt, & warner, ), among athletes (cusimano, ; kaut et al., ; sye et al., ), coaching staff (cusimano, ; guilmette et al., ; valovich-mcleod, schwartz, & bay, ), parents (sullivan et al., ), and health professionals (davies & mcmillan, ; sullivan et al., ). recent research has demonstrated that understanding about concussion is improving, however education is still needed (ernst et al., ). some of the most common misconceptions held by the general public have surrounded amnesia, loss of consciousness, and the recovery from concussive events (gouvier et al., ; willer, johnson, rempel, & linn, ). a recent study also highlighted significantly poor knowledge surrounding the necessity for both physical and mental rest after concussion. the researchers administered a survey to physical therapy students to assess their understanding of the concept of rest when recovering from a concussive injury before and after an educational lecture on the current management guidelines and the commonly used sport concussion assessment tool (scat ) protocols (sullivan et al., ). the majority of participants failed to acknowledge the importance of cognitive rest in addition to physical rest when recovering from a concussion and there was shift in understanding after the lecture with the majority recognizing the necessity of a mixed rest approach. the most recent study regarding knowledge and misconception about sports concussion in the general public was conducted in the united kingdom (uk) and revealed similar knowledge deficits as in previous studies. those who self-reported that they have had a prior concussion did not display more accurate knowledge, however were more definite in their responses (i.e. more responses that were ‘true’ or ‘false’ than ‘probably true’ or ‘probably false’) (weber & edwards, ). the researchers postulated that those who have had a prior injury may hold a false sense of security, and may have difficulty predicting consequences that differ from their own experience. coaches and parents are important components of the “safety net” and represent key figures in identifying concussion injuries and initiating the medical investigation and treatment process (sullivan et al., ). sullivan et al. ( ) found that parents of high school rugby players in new zealand demonstrated good basic knowledge of the symptoms and severity of concussion injuries, although only half reported knowledge of the return-to-play guidelines. valovich- mcleod et al. ( ) found that coaches of young athletes ( - ) were able to identify the most common signs and symptoms of concussion, with better symptom recognition among coaches with prior coaching education. some misconceptions were noted which signifies the continuing need for more awareness and education. for example, just over a quarter of coaches stated that they would let a symptomatic player return to play. a more recent study by mrazik, bawani, & krol ( ) found that minor hockey coaches were quite knowledgeable about general aspects of concussion, the onset of symptoms, and the requirement for removal from play, but were less familiar with detection of concussion with imaging or the role of genetics. a recent study from italy regarding concussion knowledge and sources in rugby players ranging from to years of age revealed that close to % of respondents were not well informed about concussion signs, symptoms, and consequences (boffano et al., ). just under one third of these players reported that they thought it was fine for a concussed player to return to the play during the same match. in addition, kaut et al. ( ) explored symptom knowledge in college level athletes playing various sports and found that % of the sample was not aware of the possible consequences following a concussion. most of the research regarding athlete understanding of sports-concussions has been conducted with adult and high school level populations with very little focus on children and youth. only one other study could be sourced which explored concussion knowledge of younger athletes. cusimano et al. ( ) investigated the concussion knowledge of atom and bantam minor hockey players from elite (aa) and house league (hl) teams, as well as the knowledge of their parents and the coaching staff who work with them. most participants could identify the mechanisms responsible for injury, but symptom recollection was substantially weak in the overall sample. older players and those on who played on the more competitive teams have demonstrated greater knowledge of the signs and symptoms and had a greater knowledge score overall. close to one half of players identified an incorrect method of concussion treatment, and almost one quarter of all players were not clear on whether a player with a concussion should continue to play. this study demonstrates that there are some significant weaknesses in knowledge among young athletes, which is similar to a study by mccrea et al. where % of high school football players reported that they did not recognize the signs and symptoms of a concussion they had incurred. knowledge sources although concussion knowledge has been investigated with various populations and sporting participants, the sources of this knowledge have not been widely identified. the accuracy and quality of information derived from various sources may be inconsistent, such as from online sources (mckinlay et al., ), and this may perpetuate misconceptions. therefore it is important to examine where athletes are learning about concussion. this information can then help to improve the communication of safety and prevention messages through the most effective means. a recent study by mrazik et al. ( ) assessed minor hockey coach’s knowledge levels and information sources. a counterintuitive finding of this study was that most of the coaches reported that concussion knowledge is important in their role, yet one-third rated their concussion knowledge as limited. coaches were asked to identify which educational sources had provided them with concussion information and then to rate each source on the degree of helpfulness. approximately half of coaches identified magazines and newspapers as major sources of information, however most coaches rated them as “not at all” or “mildly” helpful. the internet was also a frequently identified information source with more variable ratings of helpfulness. family physicians were a less frequent source of information, however were considered to be the most helpful source. the sources of information identified by athletes have been variable across studies. a study was conducted with high school rugby players and the most common sources in descending order were teachers/coaches, doctors and sports medics, other players, tv, and the accident compensation corporation/new zealand rugby union (sye et al., ). similar sources were reported in a recent study of rugby players of a wider age range (boffano et al., ). rosenbaum ( ) also surveyed high school student athletes (various sports) and non-athletes, as well as athletic trainers (atc) and coaches. athletes received knowledge from parents, friends, physicians, personal concussion/concussion of teammates or opponents, and coaches. for the athletes with an atc at their school, the trainer was the most commonly reported source followed by personal concussion/concussion of teammates or opponents, parents, physicians, friends, and coaches. the researcher noted that it was surprising to find that coaches had much less influence than expected and that parents and friends were more common knowledge sources. in a later meeting abstract by rosenbaum & arnett ( ) the sources did not differentially influence the knowledge and attitudes of high school athletes; however, the most influential sources for high school athletes were medical professionals, parents, and friends. there is limited knowledge of concussion information sources among non- athletes. early studies on the misconceptions surrounding brain injury have cited the popular media (hux, schram, & goeken, ; willer et al., ) and the internet (mckinlay et al., ) as likely sources of information within the general public. attitudes a problematic and unsafe practice among athletes is the under-reporting of concussion symptoms (mccrea et al., ). although knowledge about injuries is important for their prevention, possessing knowledge has not been consistently shown to influence safer behavioural practices (morrongiello et al., ; sye et al., ). many inter-related factors influence sports participants’ motivation to comply with safety recommendations. coaches have identified some barriers to the management of concussion in high school student athletes among which include excessive competitiveness among parents and/or athletes, the view of injuries as a weakness, and the underestimation of the potential risks of concussion (sarmiento, mitchko, klein, & wong, ). therefore, attitudes and perceptions toward the injury are important to consider in the prevention and management of sports concussions (morrongiello et al., ; register-mihalik, ). there is limited research to date regarding the attitudes of athletes with respect to concussion. rosenbaum ( ) developed a comprehensive survey regarding the knowledge, attitudes, and the reporting of concussion injuries, which he administered with high school students, athletic trainers (atc) and coaches. the atcs had the highest knowledge levels followed by the coaches. in comparison, the students had much lower knowledge and there was no significant difference found between athlete and non-athlete students, nor between athletes with access to atcs at their school and those without. atcs were found to possess the safest attitudes towards concussion followed by coaches. students had significantly less safe attitudes, which were similar between athletes and non- athletes. when all participants were taken together, there was a moderate correlation between attitudes and knowledge. rosenbaum reported that this was a valuable finding as concussion education has the potential to increase the safety of attitudes. the higher degree of unsafe attitudes among the young athletes was thought to be due to less importance given to injuries since youth tend to heal relatively quickly, and because of the sense of invincibility that is common among adolescents. this sense of invincibility creates a challenge for injury prevention with this population (larsman, eklof, & torner, ). in addition, children have been found to take more risks when they rate the danger level of an activity as low, when they believe they are not personally vulnerable to injury, as well as when they perceive that an injury was due to bad luck (morrongiello & rennie, ). perceiving oneself as vulnerable to become injured has been found to be associated with a decreased risk for injury, whereas perceiving oneself as invulnerable to injury has been related to increased risk for injury occurrences (morrongiello & rennie, ). therefore, vulnerability is important to explore in order to reduce the incidence of concussions. underestimating the seriousness of concussions has been cited as a common reason for not reporting concussion among older athletes (mccrea et al., ), thus the degree of perceived severity was considered an important attitude to explore among minor hockey players as well. worry influences behaviour in varying degrees and has been found to be related to the perceived probability of injury occurrence and risk taking (short, reuter, brandt, short, & kontos, ). it can be problematic to have little concern about a threat that is likely to occur as well as being overly concerned about a threat that is unlikely to occur. worry can have a positive impact, however, on motivating a person to take action to avoid being harmed (baron, as cited in short et al., ). prior injury experiences can influence attitudes (morrongiello et al., ) as well as the risk for injury and reporting behaviour (morrongiello et al., ; register-mihalik, ). register-mihalik ( ) found that high school athletes with fewer prior concussions tended to have more favorable attitudes toward concussion reporting and may have a greater likelihood of reporting suspected concussions. reporting behaviour in terms of safety practices, under-reporting concussion injuries and symptoms by athletes is a significant problem and mccrea et al. ( ) published a key study which highlighted this issue. high school football players were surveyed on their reporting behaviours with an objective of informing prevalence rates. the authors found that almost half of those who reported that they had sustained a concussion during the previous season had reported their concussion. the most common reasons for not reporting the injury were thinking their injury was not serious enough to warrant medical attention, not wanting to leave the game, did not know that they had sustained a concussion, and that they did not want to let down their teammates. concussions were most commonly reported to certified athletic trainers, followed by coaches, parents, and teammates. in rosenbaum’s ( ) study with high school athletes approximately % of athletes admitted that they had not reported a concussion in the past. this group also had relatively limited knowledge and held some unsafe attitudes. mccrea et al. ( ) found that once varsity football players were provided with a description of the signs and symptoms of concussion they were more able to recognize and report injuries over the course of the season. a similar study by bramley, patrick, lehman, & silvis ( ) with high school soccer players found that athletes who had received previous concussion education were about % more likely to indicate that they would always report concussion symptoms to their coach. thus, it is encouraging that education which aims to increase knowledge and promote safer ways of thinking about concussion injuries may increase the recognition, reporting, and compliance toward return to play guidelines. preventative education the high prevalence of concussions in youth, the health consequences, and the large direct and indirect costs to society signify that this is a serious public health issue (wiebe et al., ). some authors have identified a gap in the literature regarding sports-concussion prevention education initiatives as well as the evaluation of current programs for their use and effectiveness (sawyer et al., ). the responsibility for prevention of concussions does not lie solely with athletes as the socio-cultural context undoubtedly has an enormous influence on how athletes think about sports injuries and how they respond to them (emery, hagel, & morrongiello, ). extensive reshaping of the views and behaviours of the general public and of policy makers will take time and will improve with mounting evidence of the direct risk of concussion with physical contact in sports. education at all levels has been recommended to combat the issue of sports concussion and to reduce the number of concussion injuries in hockey and improve outcomes (echlin, ; emery et al., ). for the purposes of this study, prevention strategies discussed will focus on athlete adherence to concussion guidelines. effective ways of educating young adolescents. part of the coaching responsibility involves educating players about risks of injury, thus it is important to “[recognize] athletes as learners” instead of only sports participants (cassidy, potrac, & mckenzie, , as cited in provvidenza & johnston, , p. ). it is recommended that efforts to prevent injury occurrences and to encourage proper management of injuries should be more intensive and should begin earlier when working with higher risk population, such as athletes in contact sports (weissberg, kumpfer, & seligman, ). encouraging athletes to adhere to safety guidelines and to engage in less risky behaviour are tremendous challenges with young adolescents due to developmental maturity, and the cognitions, behaviours, and social-emotional tendencies related to their developmental stage (gerhardstein, ). adolescents may at times demonstrate decision-making and other cognitive skills much like adults, however developmental scientist argue that the needs of this population are different from those of adults and children (johnson & jones, ). furthermore, bennett murphy et al. ( ) reported that the literature supports that “adolescence is a critical time” to foster adherence to health promoting behaviour as “poor adherence habits tend to persist” (as cited in larsman et al., , p. ). as mentioned, some of the barriers of engaging adolescents in safety practices reflect their developmental processes. adolescence is characterized as a transition period where youth experience growing autonomy in their decision making, increased risk-taking and novelty-seeking, a strong need for social acceptance and affiliation, and development of their identity (johnson & jones, ). cognitively, adolescents tend to have less ability to anticipate future consequences, may think they are more invulnerable to harm, make judgments about risk based on their past experiences, demonstrate impaired decision-making when in high-pressure situations, and are more likely to base decisions on short- term benefits than long-term consequences (larsman et al., ). chen ( ) has found that the strong influence of social approval can lead adolescents to prioritize acting in an unsafe manner even when they know and understand the risks (as cited in johnson & jones, ). interventions with young adolescents must consider the most effective ways to increase knowledge and elicit lasting attitude and behaviour changes. models of behaviour change such as the health beliefs model can be an effective way to understand behaviour and develop intervention programs. the model proposes that behaviour change occurs when the problem is viewed as serious and likely to occur, that the person has the ability to do something about it, and that the benefits of health promoting behaviour are worth the effort. concepts such as self-efficacy and “cues to action” (i.e. reminders and promotion of awareness) have been added to the model (glanz, marcus lewis, & rimer, , as cited in gerhardstein, ). recently, injury prevention researchers have been emphasizing more encompassing ecological perspectives that take into account the socio-cultural environment, macro-level policies, community characteristics, peer and family structure and influences, in addition to the individual level behavioural models (johnson & jones, ). at the individual level however, effective intervention with athletes should employ persuasive message that combines knowledge with “personalized, thought-provoking messages” (kirkwood et al., , p. ) and the rationale for the individual’s engagement in the program from a credible source (keats, emery, & finch, ). the presentation of education by health professionals has been effective in injury prevention programs with children and adolescents (tator, ). physicians should stress to adolescents in particular the rationale behind immediately reporting a concussion and emphasize the benefits of immediate reporting rather than the risks of not-reporting. programs which focus on knowledge of risks alone have not been shown to be effective in translating into reductions in risky behaviours (johnson & jones, ). messages such “it’s better to miss one game than the whole season” and “keeping quiet can keep you out of the game” promoted by the centres for disease control and prevention (cdc) may appeal more to teens who prioritize their social spheres more than their best personal health interests (“heads up”, n.d.). peer wide education that targets behavioural norms of under-reporting injury, engaging parents in the process of reinforcing safety messages, community level tactics to alter media and professional athlete propagation of unsafe attitudes/behaviours, and policy changes are all essential components of an effective way to tackle this issue with teens (emery et al., ; sawyer et al., ). dryfoos ( ) recommends that “a set of coordinated, collaborative strategies and programs” which address protective factors along with the risk factors is essential for prevention of risk behaviours (as cited in weissberg et al., , p . ). some of the educational tactics that work best with this age group include: using multiple instructional modalities, experiential activities, presentations from someone who has undergone the experience and is telling their story, less lecturing on what they should not do, and communication of messages and information in age-appropriate language (provvidenza & tator, ). current concussion education programs. in recent years, educational programs have been developed to try to improve widespread awareness about concussion injuries and how to prevent and manage them. the cdc in the united states has taken action to improve knowledge levels and decrease the common misperceptions about concussion injuries with the development of a public health initiative called “heads up”. this program targets many audiences with materials in “tool kits” directed at coaches and trainers, athletes, parents, physicians, and schools. it is promising that there is some positive evidence of the efficacy of this program in improving awareness, as well as in changing attitudes and behaviours of coaches (sarmiento et al., ; sawyer, et al., ). these materials are available online. similar attention to the importance of this issue is being paid in canada. earlier this year an announcement was made that four organizations in canada would receive $ . million in federal funding for brain injury awareness and prevention in youth team sports (“concussion prevention”, ). the thinkfirst foundation of canada is one of these organizations (non-governmental), which has already implemented efforts towards this goal with online education courses for parents, teachers, coaches, trainers, and youth athletes to learn more about concussions. the smart hockey concussion kit contains similar materials as the heads up tool kits, but also includes action plans, a team meeting guide, player and team pledge forms, and personal concussion record forms. a video has also been created to educate and increase awareness about concussion mechanisms, consequences, and prevention of brain and spinal injury and a study was carried out by cook, cusimano, tator, & chipman ( ) with - year olds minor hockey players to evaluate its effectiveness. a survey of concussion knowledge was given just before and after the children watched the video, as well as three months later. there were some improvements in knowledge after watching the video that were maintained at the three months, as well as fewer penalties for cross checking and checking from behind were observed in these teams. since checking from behind is a primary cause of brain and spinal cord injury, the results are encouraging. “play it cool” is another educational program targeted at reducing injuries at the minor hockey level in canada and was developed with the collaboration of the canadian spinal research organization in the early s (montelpare et al., ).the comprehensive program encompasses online training curriculum and certification for coaches, an up-to-date interactive website for officials, coaches, parents and for players. the player component is specific for age level and gender and aims to appeal to a young audience by incorporating stories from professional athletes affected by concussion and taking part in contests and fun interactive activities. a recent rule change regarding head contact from hockey canada, where there is now zero tolerance for hits above shoulder level in minor hockey and female hockey, is evidence that macro-level intervention are beginning to address the limits of relying on players and coaches to reduce the risk of injury. a website dedicated to this rule change and disseminating knowledge of the revision was created and provides resources for helping leagues, referees, coaches, parents, and players to understand and adjust to the changes (http://www.hockeycanada.ca/ headcontactrule#). videos which demonstrate behaviour that would qualify as penalties are available on the website along with links to the smart hockey video, information handouts, awareness posters, return to play guidelines for coaches, and guides for pre-season meetings. the / season was the first season that the rule has come into effect. research objectives given that limited knowledge about concussions and underestimating the severity of the injury are related to under-reporting (mccrea et al., ) and that little research has been conducted with athletes below the high school level, exploring what youth know and think about concussions is warranted. gaining a sense of what the current knowledge levels and attitudes are among young adolescents can help inform the process of knowledge translation by determining which facts and messages need the most dissemination and reinforcement and what the most useful sources for transmitting that information might be. the http://www.hockeycanada.ca/% headcontactrule http://www.hockeycanada.ca/% headcontactrule current study will add to the current body of literature on sports concussions in youth by exploring the views of children and adolescents. this study is intended to provide an initial overview of the understanding of concussions by competitive youth athletes and the extent to which they endorse risky attitudes (e.g. denying the severity of the injury) and behaviours (e.g. not reporting a suspected concussion). the study employs a cross-sectional design with a unique survey based on similar studies. youth knowledge levels, sources of information, attitudes toward concussion, and symptom reporting practices will be described. minor hockey players from sherwood park, alberta and area as well as similarly aged non- hockey playing youth from schools in the area will be recruited for participation. both female and male hockey playing teams will be approached at the peewee ( - ), bantam ( - ), and midget levels ( - ). two main objectives guide the development of research questions for the proposed study. the following hypotheses were derived from review of current literature and conceptual knowledge. some areas that have not been explored to date in the literature are framed as non-directional hypotheses (creswell, ). objective : knowledge, attitudes, and behaviours. the first objective is to examine minor hockey players’ general knowledge, attitudes, and concussion symptom reporting behaviour. hypothesis . a) the knowledge level of hockey players will be significantly higher than that of non-hockey players. trends reveal that coaches, parents, and players demonstrate greater general knowledge compared to the lay population (mulhern & mcmillan, ). rosenbaum ( ) found that high school athletes and non-athletes did not differ significantly on measures of concussion knowledge, however this trend may not be applicable to younger athletes, as recent study of minor hockey players revealed differences between elite and house league players (cusimano et al., ). if there were disparities between knowledge levels of players at different competitive levels of players, it is plausible that differences would exist between elite players and those who are further removed from the hockey playing environment. b) the knowledge level of hockey players will be significantly higher at the higher age levels of hockey players. cusimano et al. ( ) have recently found that older minor hockey players have demonstrated higher knowledge levels than younger players, thus a similar trend is expected in the current sample. hypothesis . the ratings of a) severity, b) vulnerability, and c) worry about concussion will significantly differ between participants who have had a concussion in the past and those who have not. short et al., ( ) have found higher scores on a measure of perceived risk among athletes who had been previously injured compared to those who had not been injured, which was a finding in other studies as well (kontos et al., ). the authors also found a higher level of worry among those with prior injuries. ratings of how serious the injury is can vary depending on how serious their prior injury was (short et al., ). hypothesis . the ratings of the seriousness of concussions will be significantly associated with the intention to report an injury in the future. the link between risky attitudes and behaviours with respect to concussion symptom reporting has been evidenced through the clinical observations of athletes admitting that they did not report because their injury was not that severe (mccrea et al., ; rosenbaum, ). the degree to which this association is present in a young adolescent competitive athlete population will be explored. objective : sources of knowledge. the second objective is to explore where the youth are acquiring information about concussion and how helpful they have found these sources. hypothesis . the sources of concussion information will significantly differ between hockey players and non-hockey players. it is expected that players will have obtained more information from coaches, doctors, parents, and the experience of someone with concussion as they would have likely witnessed more concussive injuries due to the high risk in their sport. non-players may cite more broad sources of information such as television, the internet (mckinlay et al., ), or perhaps school. the following chapter will provide a description of the methods including participant characteristics, instrumentation, and data collection. chapter will then provide the results of this investigation. the results will be discussed in further detail in chapter within the context of the reviewed literature and clinical applications. chapter three - methods minor hockey player knowledge and views about sports concussions were explored with a cross-sectional survey research design. little is known about the knowledge levels and perspectives of this population, therefore this study intends to provide an exploration and description of knowledge trends and views of minor hockey players. knowledge, sources of knowledge, attitudes, and reporting behaviour were compared across age level (pee wee, bantam, and midget) and gender, and to a control sample of non-hockey players. this chapter overviews the research methods used in the study including the participants, instrumentation, sampling and data collection procedures, and ethical considerations. data was analyzed mainly using descriptive statistics. participants convenience sampling was used to recruit minor hockey players and non- hockey players between the ages of and years to participate in this study. specifically, athletes who were already participating in current research programs through the university of alberta were approached to determine interest in participating in this project. subjects within this age range were all playing minor hockey in leagues where body checking is legal (beginning at the pee wee level in alberta). as noted in chapter , body checking has been associated with an increase in concussion injuries (emery et al., ). the data for this study was obtained from both male and female minor hockey players at the pee wee ( - years), bantam ( - years), and midget ( - years) competitive levels in edmonton, alberta and area during the - season. similarly aged non- hockey players were recruited to form a comparison sample, which was also a convenience sample. convenience sampling was chosen for efficiency of survey administration. the disadvantage of using convenience samples is the limited generalizability of the samples to the broader population. a total of hockey players were recruited for this study; from the sherwood park kings athletic club (spkac) and from the st. matthews hockey and sports club (smhsc) (see table ). a total of players participated in the study for a response rate of . %. only one athlete with parental consent declined participation. the non-hockey players were recruited from grades to at st. theresa catholic school and archbishop jordan catholic high school in sherwood park, alberta. these schools were selected since they were from the same geographic location as the hockey players. recruitment letters were sent home to students from these schools. fifty three parental consent forms were returned from st. theresa and none were returned from the high school. two of the parents declined participation, three students were absent on the day the survey was administered, and were currently playing hockey or had played within the past year and were therefore excluded. therefore, only students met the criteria for a non-player participant for a response rate of . %. in total there were male and female participants. the participants ranged in age from to years (mean = . ). the low response rate was therefore primarily due to difficulty obtaining parental consent, which was particularly challenging at the high school level. the physical education instructor that assisted with dissemination of the consent forms at the high school later noted that compliance among their students to bring home and return signed parent permission forms was exceedingly poor. he felt this explained the low response from high school subjects. the completion rates of the survey itself were high, with only one player and two parents who declined participation. hockey players. the minor hockey players were recruited from male and female teams within the st. smhsc and the spkac. in order to maximize the representativeness of the sample there were no exclusion criteria for minor hockey players within the specified hockey clubs and age groups. of the hockey players who took part in the study, ( . %) played with the smhsc and ( . %) played with the spkac. one-hundred and fifty-six ( . %) hockey players were male, while ( . %) were female. it is important to note that the numbers are much lower for females as only two of the teams from the clubs mentioned above were female teams. the hockey players ranged in age from to years (mean = . ). players reported that they had played hockey with a team from a range of to years (mean = . ). fifty-five players ( . %) reported that they have experienced a concussion in the past. forty-eight ( . %) of those players reported that they had visited a physician. non-hockey players. non-hockey players were defined as students who have not played on a recreational or elite hockey team within the last year. majority of the sample were female, which is a reverse trend from the hockey player sample ( male and female). this trend occurred because there were males excluded and only females excluded who were currently playing hockey or had played within the past year. the non-hockey players were recruited from grades to grade and ranged in age from to years (mean = . ). four participants reported a history of concussion and had visited a physician. table participant demographic variables by participant group demographic variables participant group n male, n female, n age, years playing concussion history, n physician seen, n mean hockey players . . peewee . . bantam . . midget . . non-hockey players . total . . ethical considerations the current study was approved by the university of alberta’s research ethics office in october, . before data collection began consent was also granted from the executive committees from smhsc and the spkac, as well as the office of the superintendent of the elk island catholic school board. all of the participants were children under the age of ; therefore parental consent was required prior to their participation in the study. an information sheet describing the purpose and details of the study and two parental consent forms were distributed to parents by the supervising neuropsychologist during a pre-season meeting, coaches or managers of teams, or school personnel. parents were instructed to have their child bring a signed consent form to the research session or to a designated person prior to the session (i.e. coach or teacher) if they wished for their child to participate. see appendix a for the parent information letter and consent form. only those players with a signed parental consent form at the research session were provided an assent form in exchange (see appendix b). the researcher explained in person to participants that the surveys would be anonymous and confidential, that their participation was voluntary, that they could ask questions at any time, and the benefits and risks associated were outlined. only those players who provided an assent form indicating that they agreed to participate were given a questionnaire in exchange. instrumentation concussion questionnaire. a unique questionnaire was developed to answer the research questions. two versions of the survey were created; one for the athlete sample (see appendix c) and one for the comparison sample (see appendix d). the two questionnaires asked the same questions except for minor wording changes on the non-hockey player version (e.g. “adult” instead of “coach”; and “sport” or “physical activity” instead of “hockey when asking about behaviour). permission was granted to use similar questions and formats as the coaches concussion quiz developed for mrazik et al.’s ( ) study. several other concussion questionnaires were utilized as resources when formulating the questions such as the soccer concussion quiz (http://www.soccerheadinjuries.org), heads up concussion in youth sports: quiz for coaches, athletes, and parents (http://www.cdc.gov/concussion/pdf/quiz_eng.pdf), and the rosenbaum concussion knowledge and attitudes survey (rockas) (rosenbaum, ). specifically, questions about knowledge and rtp were directly formulated from these sources. paper-and-pencil administration was chosen over electronic format to allow participants to ask for clarification or assistance, and to ensure that the participant themselves were the ones completing the form without external influence. the concepts and questions covered in the questionnaire were written at a grade - level so that they could be understood by youth years of age and older. there were questions on the survey, which measured particular aspects of knowledge, the sources of the acquired knowledge, key attitudes or viewpoints, and symptom reporting behaviour practices. each of these sections is described below. knowledge. four multiple choice and one checklist question made up the knowledge portion of the survey. consistent with the content from other questionnaires reviewed for this project, the current questionnaire kept to commonly asked knowledge questions. the first knowledge item assessed whether participants know what a concussion is (i.e. “type of injury”). secondly, participants were asked about their knowledge of what constitutes a concussion, which will be referred to as the “cause” of injury. knowledge about guidelines on “safe rtp” and the participant’s general knowledge of the “prevalence” of sports concussions occur at their age level were also posed. participants were then asked to identify the most common symptoms of concussion from a provided checklist. sources. the participants were asked if they had acquired their concussion knowledge from a series of sources and to identify how helpful the sources have been for increasing their knowledge. a series of sources were provided in a closed question format (yes or no) with one partial open question where they could specify “other” sources not listed. the sources listed were those deemed to be the most appropriate for sporting participants of this age range and were also drawn from examples in prior research (boffano et al., ; mrazik et al., ; rosenbaum & arnett, ;). if participants indicated that they had received information from a listed source then they were asked to rate the degree of helpfulness of that source out of (not helpful), (moderately helpful), and (very helpful). an open ended question then asked participants to indicate which source has been the most helpful for increasing their concussion knowledge. attitudes. unsafe attitudes about concussion have been reported in the sports medicine literature (mccrea et al., ; rosenbaum, ; sye et al., ) and unsafe attitudes are related to unsafe practices in children (morrongiello et al., ) and adolescents (register-mihalik, ). several attitudes are implicated in the management of concussion in youth. three questions were developed to assess the participants’ views regarding sports concussions. underestimating the severity of concussions has been cited as a common reason for not reporting concussion among older athletes (mccrea et al., ), thus the degree of perceived seriousness was considered an important attitude to explore among minor hockey players. perceived seriousness was assessed by having participants rate the severity of concussion compared to that of other sports injuries. response options were ranked from “more serious” to “less serious”, or participants could answer “i don’t know”. participants were asked about the likelihood that they would become concussed during the current season. this question sought to explore the level of vulnerability that participants may feel toward the injury as perceived invulnerability to injury in youth and among athletes has been related to increased risk taking (morrongiello & rennie, ). participants selected from three ranked responses from “likely” to “unlikely”, or “i am skilled so it probably wouldn’t happen to me”. in addition, the degree of worry that participants had about becoming concussed in the current year was an area of interest as a degree of worry can have a positive influence on safety practices (baron, , as cited in short et al., ). participants selected responses from “not at all” to “very worried”. behaviours. the under-reporting of concussions is a serious problem among athletes (mccrea et al., ; williamson & goodman, ). the participants were therefore asked what they “would do” and what they have been told they “should do” if they were to become concussed during a hockey game. in a contingency question, participants who indicated that they have had a sports concussion in the past were asked what they “did” at the time of injury. these three questions were provided in multiple-choice format with similar responses. another question about symptom reporting was designed to explore the main reasons that athletes fail to report concussions. participants could choose more than one listed option and a partial open question which allowed for the inclusion of “other” reasons. pilot testing and validity. pilot testing of the survey was conducted with a small group of male youths known to the researcher. two of the youths were hockey players ages and and two played other sports (soccer and lacrosse) and were and years of age. feedback was obtained from these participants regarding the understandability and wording of questions, the length of questionnaire, and whether any feelings of discomfort or distressed arose during completion. minor revisions were made to the wording and format of some of the questions to make the questionnaire as easy to read and understand as possible. it was also decided that players under the pee wee level would have difficulty reading and understanding the questions. finally, the questionnaire was reviewed by several experts in the field of head trauma (a neuropsychologist and two sports medicine physicians) and was deemed to have appropriate content validity. sampling and data collection procedures hockey players. recruitment from smhsc. participants from the smhsc were recruited from pee wee level teams that were participating in another concussion research project at the university of alberta by a neuropsychologist specializing in concussion injuries. the purpose of the study was introduced to the coaches and parents by the neuropsychologist during a pre-season meeting for pee wee level teams. an information letter outlining the purpose of the study and consent forms were provided to parents. parents had the opportunity to ask questions and to provide consent for their child to participate in the study at that time. one player declined to participate in the study, therefore a total of minor hockey players were surveyed that same day at the university of alberta in two adjacent computer labs. survey administration procedures are described below. recruitment from spkac. a concussion seminar for coaches working with the spkac was held by the same neuropsychologist mentioned previously where the study was introduced and coaches could sign up on a contact sheet if they were interested in participating. the vice president of the league consulted with executive members of the spkac and approval was then provided for all of the teams in the club to be approached for participation in the study. managers of each hockey team were contacted by phone and subsequently emailed the parent information letter and consent forms, which they then distributed to players via email or in person. coaches and managers collected the completed consent forms from the players on their respective team. arrangements were then made to meet with each team prior to a convenient practice to administer the surveys. most of the teams were surveyed at hockey rinks in a dressing room and one team was surveyed in a school classroom where a dry land practice session was being held. participants with consent were identified from the team by roll call from the forms signed by parents. only those players with parent consent were in the testing room with the researcher. the survey administration was then carried out as described below. non-hockey players. a comparison convenience sample of non-hockey players was recruited through st. theresa catholic school and archbishop jordan catholic high school in sherwood park, ab. sherwood park was chosen because the majority of the hockey player participants were from this urban area adjacent to edmonton, thus would have similar socio-demographic statuses. the principals granted access to their students and a primary contact from each school assisted with recruitment of students via the disbursement of parent information and consent forms. parent consent forms were dropped off for the school personnel. at st. theresa catholic school participants were recruited from one grade , , and class and two grade classes. at archbishop jordan high school two grade classes and one grade class were approached for recruitment. both school contacts reported difficulty collecting completed parent consent forms from students. the physical education instructor from the high school reported that none of the students returned consent forms; therefore data was not collected at that school. the school psychologist at st. theresa school arranged for all of the participants to complete the survey on the same day at the school. two groups of approximately - students were brought to a large resource room containing tables and chairs. students who have played hockey in the last year were identified by roll call from the parent consent forms or if parents had not identified this on the consent form then students were asked directly. these students were given an athlete concussion questionnaire; however, this data was not intended to be used in the study and was excluded. survey administration. participants were given a brief and simple introduction to the study. assent forms were then distributed and the parameters of confidentiality, anonymity, voluntary participation, and the risks and benefits of participation in the study were discussed. instructions on how to complete the assent form were given and participants were asked whether they had any questions. those who agreed to participate were then given a self-administered paper-and-pencil questionnaire in the group settings. participants were asked not to share answers and to try to be as honest as possible. they were encouraged to ask for clarification or assistance on any of the questions and the researcher observed for signs of confusion or difficulty with reading and assisted as needed. completed assent forms and questionnaires were kept separately to protect anonymity. the data collection process generally took between and minutes. overview of analysis the data was entered into a spreadsheet and analysed using statistical package for the social sciences (spss) version . . data was grouped by hockey player and non-hockey player, by gender (for the bantam and midget age levels only), and by hockey player age level (males only). the results were reported in terms of the frequency of participants who responded to particular survey items, the percentages, and as bar graphs. the variables of interest in this study were all categorical in nature; therefore comparisons were made between one survey item and one group variable or between survey items at a time. cross-tabulations were utilized and when there were a sufficient number of cases per cell a pearson chi-square statistic was reported. when there was insufficient variability column proportions were compared with a z-test for significance at the p < . level. the following chapter will present the descriptive data from the survey for players and non-players and comparisons will be made to test the hypotheses. the final chapter will discuss the results within the broader context of the sporting environment and the relevant reviewed literature. chapter four - results this chapter presents the results of the data analysis. the characteristics of the sample data will be described first followed by findings organized by the study’s two main objectives. under the first objective, findings will be presented for knowledge items, attitudes and behaviours. the second objective describes the sources of knowledge followed by an examination of their perceived helpfulness. in each section, descriptive statistics for the survey items are provided, followed by inferential statistics which address the hypotheses. the chapter concludes with supplementary analyses of survey items concerning concussion signs and symptoms, and reasons for not reporting concussion symptoms. sample characteristics participant information was described in chapter and a summary of these statistics can be found in table . hockey players. the mean age of hockey players (n = ) was . (sd = . ) with a range of years. age was not normally distributed among hockey players according to the shapiro-wilk test of normality (w = . , p < . ). the distribution was slightly skewed to the right ( . ) and slightly flat relative to the standard normal distribution (- . ). this was most likely related to the selection methods of the sample of subjects. there were similar numbers of participants in each hockey age level (pee wee, n = ; bantam, n = ; midget, n = ). to remove the confound of gender only male players were included when computing age level comparisons. there were male pee wee players, male bantams, and male midgets. the mean number of years playing organized hockey was . (sd = . ). the range was years. the number of years playing hockey, however, was normally distributed (w = . , p = . ). there was significant positive correlation between the age and the number of years playing (r = . , p < . ) as well as between the age level and the number of years playing (r = . , p < . ). therefore, only ‘age level’ was considered in the data analysis. non-hockey players. there was a smaller age range ( years) within the non-hockey player sample as no data could be collected from the high school. the mean age was . (sd = . ). age was also not distributed normally among the non-player data (w = . , p = . ). age level comparisons were not made between hockey and non-hockey players due to the age range disparity, the skewed distribution of player ages, and much smaller sample size (n = ). concussion history group comparisons. concussion history by participant group is reviewed in table . comparisons by group were made by cross-tabulating the data and performing a chi-square (x ) statistical calculation. there was a significant relationship between hockey player status and concussion history in that a significantly greater proportion of hockey players than non- hockey players had suffered a concussion in the past during hockey/other sport or physical activity (x ( , n = ) = . , p = . ). data from participants who circled “i don’t know” were removed from this analysis. there was a significant relationship between age level of hockey players and history of concussion in hockey (x ( , n = ) = . , p = . ). a column proportions test revealed that a significantly greater proportion of bantam players (compared with pee wee players) reported that they suffered a concussion in the past while playing hockey (z-test, p < . ). additionally, a significantly greater proportion of pee wee players (compared with midget players) reported that they did not suffer a concussion in the past while playing hockey (z-test, p < . ). approximately % of pee wee, % of bantam, and % of midget players circled that they did not know if they had sustained a concussion in the past or not. a significantly greater proportion of midget players than bantam and pee wee players reported that they were unsure if they had suffered a concussion in the past while playing hockey. a bonferroni adjustment to the p-values was applied to all column proportion comparisons in this study. only bantam and midget level players are included when players are compared across gender in all of the following analyses as there were no female pee wee participants. in terms of gender difference in concussion history, a greater proportion of female hockey players ( . %) than male players ( %) reported that they have sustained a concussion in the past, although the different was not statistically significant. however, a significantly greater proportion of male than female hockey players reported that they did not know if they had sustained a concussion in the past ( . % and %, respectively; z-test, p < . ). objective : knowledge, attitudes, and behaviours knowledge. the data from each knowledge question in binomial format (correct and incorrect) and across the four response options were cross-tabulated with hockey player versus non-player status and then with player age level. pearson chi-square statistics were calculated for each comparison when the cell counts were at or above the expected counts, otherwise a z-test comparing column proportions was explored. hypothesis . a) the knowledge level of hockey players will be significantly higher than that of non-hockey players. knowledge was assessed with four multiple choice items and a symptom checklist question. data from the symptom checklist is described in the supplementary analyses section at the end of this chapter. additionally, players’ knowledge of rtp guidelines was assessed with a question asking them what they have been told they should do when they are concussed. this data is described in the attitudes and behaviours section below. frequencies and percentages are summarized in table for each multiple choice knowledge survey item for hockey players and non-hockey players. nearly all of the hockey players ( . %) and non-hockey players ( . %) correctly identified concussion as a type of brain injury. approximately % of players and % of non-hockey players correctly identified how brain injury occurs in hockey. approximately % of hockey players and a higher (though not statistically significant) proportion of non-hockey players ( . %) were knowledgeable about safe rtp guidelines than hockey players. the lowest area of knowledge was the prevalence of concussions in hockey with a significantly higher number of hockey players ( %) compared with non hockey ( %) players responding correctly. cross-tabulations compared the four areas of knowledge across hockey players and non-hockey players. there was little variability in the responses for injury type; therefore, a x could not be calculated. two knowledge areas revealed significant relationships with hockey player status. for instance, a significantly greater number of hockey players than non-hockey players demonstrated accurate knowledge about the cause (x ( , n = ) = . , p = . ) and prevalence of concussions (x ( , n = ) = . , p = . ). in addition, a significantly greater proportion of non-players than players think that a player must have a “direct blow to the head”, and a significantly greater portion of players responded correctly (z-test, p < . ). the hypothesis that knowledge would differ between players and non-players was supported for the areas of cause and prevalence, but not for the identification of the type of injury or rtp guidelines. b) the knowledge level of hockey players will be significantly higher at the higher age levels of hockey players. the data was cross-tabulated and pearson chi-square statistics or column proportions z-tests were calculated to examine age level group comparisons (see table ). all age groups knew the most about the type of injury with a high degree of accuracy, followed by moderate to high knowledge about the cause, moderate knowledge level of safe rtp, and finally low to moderate knowledge of concussion prevalence. only one of the knowledge areas measured was significantly associated with age level. significantly fewer pee wee hockey players compared with midget players were able to correctly identify the cause (x ( , n = ) = . , p < . ). the hypothesis that the knowledge levels would differ by age level was supported for only one of the multiple choice knowledge questions. gender. in addition, no significant differences emerged across these knowledge areas neither between male and female hockey players (bantam and midget levels only), nor between the entire sample of males and females. table frequency and percentage of knowledge by player status and age level knowledge question player status player age level player non- player x pee wee bantam midget x injury type n (%) ( . ) ( . ) ( . ) ( . ) ( . ) cause n (%) ( . ) ( . ) . * a ( . ) a,b ( . ) b ( . ) . *** safe rtp n (%) ( . ) ( . ) . ( . ) ( . ) . ) . prevalence n (%) ( . ) ( . ) . * ( . ) ( . ) ( . ) . note: blank cells indicate that a chi-square could not be calculated due to fewer than the expected cell counts in the cross-tabulation table. frequencies within rows with differing subscripts indicate a significant difference at least at the p < . level, using a z-test comparing column proportions. *= p < . , *** = p < . league. although it was not a main question in the study an interesting set of results came from the comparison of pee wee players from the two different hockey associations (smhsc and from the spkac). the responses did not differ for type of injury or for prevalence, however a significantly greater proportion of players from the spkac correctly identified the cause (x ( , n = ) = . , p = . ). specifically, significantly more pee wee players from smhsc than spkac circled the incorrect response “has to lose consciousness (get knocked out)” to have a concussion. a significantly greater proportion of spkac players also correctly identified the safe rtp guidelines (x ( , n = ) = . , p = . ). specifically, significantly more pee wee players from the smhsc incorrectly circled that it is it safe to rtp “for the next game, as long as it is at least days later”. attitudes and symptom reporting behaviours. descriptive statistics for attitude and behaviour questions are provided first, followed by the hypotheses for these variables. attitudes. table summarizes the data for the three attitudes that were measured by hockey player versus non-player status, and by player age level. the three attitudes explored include perceptions of the severity of concussions, vulnerability, and degree of concern about getting a concussion. there were lower than expected cell counts in the cross-tabulation analyses for the majority of attitude item comparisons, therefore column proportions z-tests were calculated. severity. the majority of players (n = , %) perceive concussions to be “more serious” than other sports injures, which was a significantly greater proportion (z-test, p < . ) than non-players (n = , . %). nearly % of players (n = ) perceive concussions to be “as serious” as other injuries, while a slightly larger percentage of non-players perceive concussions to be “as serious” (n = , . %). approximately - % of both hockey players and non-players stated that they perceived concussions to be “less serious”. four percent of players (n = ) did not know how severe concussions were compared to other injuries, which was significantly fewer than the non- player group where % (n = ) were unsure of the severity (z-test, p < . ). among the different hockey age levels, a greater proportion of midget players than the younger age levels indicated that they perceive concussions to be “more serious” than other injuries. this difference was only significant between midget and bantam players (z-test, p < . ). a greater proportion of bantam than pee wee or midget players indicated that they perceived concussions to be “as serious” as other injuries. again, the difference was only significant between bantam and midget players (z-test, p < . ). vulnerability. non-players were given the same attitude questions as players, however for the vulnerability item they were posed a hypothetical question (i.e. “if you were to play hockey, how likely is it that you could get a concussion during a hockey game this year”). in terms of the perceived vulnerability of concussions, % (n = ) of hockey players and half of non- hockey players (n = , . %) reported that they felt that it was “somewhat likely” that they would become concussed in the upcoming year. eighteen percent of players (n = ) and a higher percentage of non-hockey players (n = , %) felt that it was “likely”, although the difference was not statistically significant. twenty-eight percent of players felt that it was “unlikely” they would sustain a concussion, while a slightly smaller percentage of non-players chose this option (n = , . %). an additional % (n = ) of players chose the response option “i am skilled, so it probably wouldn’t happen to me”. a significant relationship between age level and perceptions of vulnerability was not found (x ( , n = ) = . , p = . ). approximately half of midget and bantam players reported that they were “somewhat likely” to become concussed, whereas about % of pee wee players selected this option. in a reverse trend, over % of pee wee players and approximately % of bantam and midget players reported that becoming concussed was “unlikely” in the upcoming year. this difference was significant between pee wee and midget players (z-test, p < . ). the proportions were more similar across the three age levels for the options “likely” and “i am skilled, so it probably wouldn’t happen to me”. worry. half of hockey players (n = ) and % of non-players (n = ) reported that they were “not at all” concerned about becoming concussed in the upcoming year. this difference was statistically significant (z-test, p < . ). a large portion of players (n = , %) were “a little bit” concerned about becoming concussed, whereas only % (n = ) of non-players chose this option. this was also a statistically significant difference (z-test, p < . ). a higher portion of bantam and midget players reported that they were “not at all” worried when compared to pee wee players; however, this was not a significant difference. there were fewer than the expected cell counts of the cross-tabulation table for gender differences of hockey players in severity, vulnerability, or worry, therefore an accurate x could not be calculated. column proportions z-tests were not significant for any of the attitude items at the p < . level. table frequency and percentage of attitude by participant group participant group hockey player age level non-player player pee wee bantam midget attitude n (%) n (%) n (%) n (%) n (%) severity less ( . ) ( . ) ( . ) ( . ) ( . ) as ( . ) ( . ) c, d ( . ) d ( . ) c ( . ) more a ( . ) b ( . ) c, d ( . ) d ( . ) c ( . ) don’t know a ( . ) b ( . ) ( . ) ( . ) ( . ) vulnerability x value = . likely ( . ) ( . ) ( . ) ( . ) ( . ) somewhat ( . ) ( . ) ( . ) ( . ) ( . ) unlikely ( . ) ( . ) c ( . ) c, d ( . ) d ( . ) i am skilled wouldn’t happen ( . ) ( . ) ( . ) ( . ) worried not at all a ( . ) b ( . ) ( . ) ( . ) ( . ) a little bit a ( . ) b ( . ) ( . ) ( . ) ( . ) quite a bit ( . ) ( . ) ( . ) ( . ) ( . ) very worried ( . ) ( . ) ( . ) ( . ) ( . ) note. frequencies within rows with differing subscripts indicate a significant difference at least at the p < . level, using a column proportions z-test. subscripts a and b are used for comparisons between hockey player and non-hockey player in each row, whereas subscripts c and d are used for age level comparison symptom reporting behaviours. the frequency data for symptom reporting behaviours of hockey players by gender and age level, as well as the data from non-players are summarized in terms of frequencies and percentages in table . there were lower than expected cell counts in the cross-tabulation analyses for behaviour items, therefore column proportions z-tests were calculated. what have participants been told they should do if they suffered a concussion? majority of hockey players ( %) and all of the non-players reported that they have been told that they should “stop playing and tell a coach/trainer/adult” if they were to become concussed. approximately % of players indicated that they would tell the coach/parent after the game. these players were all male; one was a pee wee player and two were midget players. no significant differences were found between hockey players and non-players, or by gender. a greater proportion of pee wee players compared to bantam players reported that they should “keep playing the game and wait to see how they feel”, however this difference was not significant. what would participants do if they suffered a concussion? the majority of hockey players ( . %) and non-players ( . %) indicated that they would stop playing and report their injury if they became concussed during a game. this was not a statistically significant difference. likewise, there were no statistically significant differences by age level. a greater proportion of bantam players ( . %) than pee wee ( . %) or midget players ( . %), however, reported they would stop and tell. pee wee players were more likely to report that they would “keep playing no matter what” and to “tell the coach after the game” than bantam or midget players, but results did not reach statistical significance. the following qualitative descriptions of the different behavioural options are provided for interest’s sake, as under-reporting concussion symptoms are a tremendous area of concern. note that the data described is for all players, therefore age levels include both male and female players. seven players (approximately %) stated that they would not tell anyone and keep playing no matter what. three respondents each from the pee wee and midget levels chose this response as well as one bantam player. eighteen players ( . %) indicated that they would keep playing and wait to see how they felt. of these, midget players ( . %) encompassed a slightly greater proportion than pee wee ( . %) or bantam ( . %) players. nine players ( . %) told their coach/parent after the game and all were male players across the three age levels. five players ( . %) responded that they would not tell anyone unless their symptoms got really bad. even though four of these respondents were male the proportion was actually higher for female players, which is likely due to the much smaller sample of female players. similar proportions were from the pee wee and midget divisions. the differences between all the proportions across hockey players and non- hockey players, as well as by genders were not significant for intended reporting behaviour. what did participants who suffered a concussion do? participants who reported that they had sustained a concussion in the past were asked about what they did at the time of injury. forty-nine players and three non-players with prior concussions responded to this question. twenty-one players ( . %) reported that they stopped playing and told their coach/trainer, with equal proportions across male and female players. three players ( . %) told the coach/parent after the game (two were male and one was a female). nine players reported that they kept playing the game and waited to see how they felt (equal proportions between male and female players). four players ( . %) did not tell anyone until their symptoms got so bad that they couldn’t play. even though an equal numbers of male and female players selected this option, the proportion was three times greater for females, which may be due to the unequal sample sizes. somebody else noticed the concussion or symptoms in of the players ( . %) and pulled them out of the game. there was a three-fold greater proportion of male than female players who chose this option. the differences between all the proportions across hockey players and non-players, as well as by age level (males) and gender were not significant. table frequency and percentage of symptom reporting behaviour by participant group participant group hockey players non-player player pee wee bantam midget reporting behaviour items n (%) n (%) n (%) n (%) n (%) what should you do? stop and tell ( ) ( .) ( . ) ( . ) ( . ) tell after the game ( . ) ( . ) ( . ) keep playing to see how feel ( . ) ( . ) ( . ) tell a friend nobody else not tell unless so bad what would you do? stop and tell ( . ) ( . ) ( . ) ( . ) ( . ) keep playing no matter what ( . ) ( . ) ( . ) ( . ) ( . ) keep playing to see how feel ( . ) ( . ) ( . ) ( . ) ( . ) tell after the game ( . ) ( . ) ( . ) ( . ) not tell unless really bad ( . ) ( . ) ( . ) ( . ) tell a friend nobody else what did you do? stopped and told ( . ) ( . ) ( . ) ( . ) ( . ) told after game ( . ) ( . ) ( . ) kept playing to see how i felt ( . ) ( . ) ( . ) ( . ) told a friend nobody else not tell unless so bad ( . ) ( . ) ( . ) somebody else stopped me ( . ) ( . ) ( . ) ( . ) note: chi-square statistics could not be calculated due to fewer than the expected cell counts in the cross-tabulation table. comparisons were made using column proportions z-tests. frequencies within rows with differing subscripts indicate a significant difference at least at the p < . level. hypothesis . the ratings of a) severity, b) vulnerability to, and c) worry about concussions will differ between participants who have had a concussion in the past and those who have not. the option “i don’t know” under the survey question about concussion history was excluded from the following analyses (statistics regarding the frequency of this response option can be found under the heading sample characteristics above). a) severity. the option “i don’t know” was removed from the list of options for the survey item regarding severity of sports concussions so that only the three levels of severity were explored (“more serious”, “as serious”, and “less serious”). in order to calculate a chi-square statistic, the data regarding severity was regrouped into two categories (instead of three) to yield the minimum expected count per cell of the cross-tabulation table. one category encompassed the ratings “more serious”, and the other encompassed both “as serious” and “less serious”. concussion history and perceived severity and were compared using a two-by-two cross- tabulation. approximately % (n = ) of participants with a concussion history rated concussions to be “more serious” than other injuries, whereas about % (n = ) of those without a history of concussion rated concussions to be “more serious”. although a greater proportion of those who rated concussions to be “more serious” had a prior concussion, the difference was not significant. overall, the pearson chi-square statistic did not reveal a significant relationship between severity and concussion history (x ( , n = ) = . , p = . ). the hypothesis that those with a concussion history would rate concussion severity differently than those without a concussion history was not supported. b) vulnerability. in order to calculate a chi-square statistic, the data regarding vulnerability to concussions was regrouped into three categories (instead of four) to yield the minimum expected count per cell of the cross- tabulation table. the two options “unlikely” and “i am skilled at hockey, so it probably wouldn’t happen to me” were combined and compared with “somewhat likely” and “likely”. a pearson chi- square statistic revealed a significant relationship between vulnerability and concussion history (x ( , n = ) = . , p < . ). specifically, participants with a concussion history (n = , . %) were significantly more likely than those without a concussion history (n = , . %) to report that they are “somewhat likely” to sustain a concussion in the upcoming year. those who have not suffered a concussion in the past (n = , . %) were significantly more likely than those who have had a prior concussion (n = , . %) to report that it is “unlikely/wouldn’t happen to me”. a greater proportion of participants with a concussion history (n = , . %) reported that they were “likely” to obtain a concussion in the upcoming year than those without a concussion history (n = , . %), although this difference was not statistically significant. c) worry. in order to calculate a chi-square statistic, the data regarding the degree of worry about sustaining a concussion was regrouped into three categories (instead of four) to yield the minimum expected count per cell of the cross- tabulation table. the two options “quite a bit” and “very worried” were combined and compared with the options “a little bit” and “not at all”. a pearson chi-square statistic revealed a significant relationship between degree of worry and concussion history (x ( , n = ) = . , p = . ). participants with a concussion history (n = , . %) were significantly more likely than those without a history of concussion (n = , . %) to report that they are “a little bit” worried. those who have not had a concussion in the past (n = , . %) were significantly more likely than those who have been concussed in the past (n = , . %) to report that they were “not at all” worried. the options “quite a bit/very worried” were reported in equal proportions across the groups at approximately % of respondents (prior concussion, n = ; no prior concussion, n = ). hypothesis . the ratings of the seriousness of concussions will be significantly associated with the intention to report an injury in the future. as above, the option “i don’t know” among the severity response options was removed. in order to calculate a chi-square statistic, the data regarding severity was regrouped into two categories (instead of three) to yield the minimum expected count per cell of the cross-tabulation table. one category encompassed the rating “more serious”, and the other encompassed both “as serious” and “less severe”. the future intention to report concussions was explored with the survey item that asked athletes what they would do if they sustained a concussion. the six behaviour options on this item were regrouped into two categories. the first category encompassed the option “stop playing and tell a coach/adult” and the remaining options were grouped together to represent “under-reporting” behaviour. perceived severity and intended behaviour were compared using a two-by-two cross-tabulation. approximately % (n = ) of hockey players who rated concussion to be “as serious” as other injuries reported that they would stop playing and tell a coach/adult compared to about % (n = ) of those who rated concussions to be “more serious”. overall, the pearson chi-square statistic was not significant (x ( , n = ) = . , p = . ). the hypothesis that severity would be related to the intention to report a concussion in the future was not supported. objective : sources of knowledge the second objective is to explore where youth are acquiring information about concussion and how helpful they have found these sources. sources of information. hypothesis . the sources of concussion information will differ between hockey players and non-hockey players. frequencies are described for hockey players prior to the comparison with non-players. the most frequently identified source of concussion information by hockey players was “parents/guardians”, which was reported by ( . %) of players. the next most frequent source was from “someone who has had a concussion” (n = , . %), followed by “coaches” (n = , . %), “doctors” (n = , . %), “school/teachers” (n = , . %), “teammates/friends” (n = , . %), “tv/movie” (n = , . %), and finally the “internet” (n = , . %). a greater proportion of hockey players than non-players reported that “parents/guardians” were a source of concussion information. this difference was not significant, but the chi-square approached significance (x ( , n = ) = . , p = . ). more non-players received information from “teammates/friends” than players ( . % vs. . %), and this difference also approached significance (x ( , n = ) = . , p = . ). hockey players were significantly more likely to report that they have learned about concussions from “coaches” (x ( , n = ) = . , p = . ) and “doctors” (x ( , n = ) = . , p < . ) than non-players. the hypothesis that the information sources would differ between hockey players and non-players was supported for two out of the eight sources provided (coaches and doctors). figure . percentage of players and non-players who have acquired information from various sources. age level. in addition, the three hockey player age levels were compared. midget players were significantly more likely than bantam or pee wee level players to report that they have learned about concussions from “coaches” (x ( , p e rc e n ta g e s information sources hockey player non-hockey player n = ) = . , p < . ). bantam and midget level players were significantly more likely to report that they have learned about concussions from “doctors” (x ( , n = ) = . , p = . ) than pee wee players. gender. male hockey players were significantly more likely to report that they have learned about concussions from “coaches” (x ( , n = ) = . , p < . ) and “internet” (x ( , n = ) = . , p =. ) than female hockey players. a higher proportion of male than female players reported that they have acquired knowledge from “tv/movie”. this difference approached significance (x ( , n = ) = . , p = . ). other sources. any other sources of information listed by participants that have helped them to acquire information about concussions are presented in table . some players provided responses that elaborated upon the sources already provided, therefore are not listed. for example, with respect to tv some participants indicated particular programs such as cbc hockey night in canada, sports net, and tsn. table other sources of information listed by participants other sources n % personal experience with concussion ( . ) other family member ( . ) magazine article/books ( . ) professional athlete (sidney crosby) ( . ) p.a.r.t.y program ( . ) witnessed a concussion ( . ) other (the survey, other sports) ( . ) helpfulness of sources. the most helpful source reported by hockey players was “doctors” with almost % rating them as very helpful. “parents/guardians” were the next most helpful, followed by “someone who has had a concussion” and “coaches”. the “internet”, “school/teachers”, “tv or movie”, and “teammates/friends” were the least helpful sources. when the data regarding the helpfulness of information sources was compared between hockey players and non-players, a significantly greater proportion of hockey players than non-players reported that they have found “school/teachers” as not helpful (z-test, p < . ). figure . helpfulness ratings of information sources by minor hockey players age level. age level differences were explored and a significantly greater proportion of midget than pee wee hockey players rated “doctors” as moderately helpful (z-tests, p < . ). a greater proportion of pee wee ( %) than midget p e rc e n ta g e information source not helpful moderately helpful very helpful ( %) or bantam ( %) level players rated “doctors” as not helpful, although the difference was not statistically significant. all of the age levels, however, rated “doctors” to be “very helpful” in similar proportions. gender. a significantly greater proportion of female than male players found that receiving information from “someone who has had a concussion” was moderately helpful (z-test, p < . ), and a significantly greater proportion of male than female players found that receiving information from “someone who has had a concussion” was not helpful (z-test, p < . ). participants were given an open ended question which asked them to indicate what the most helpful source has been for increasing their concussion knowledge. see table for responses given. table . frequency and percentage of most helpful sources listed by participants sources n % coaches/trainers ( . ) parent(s) ( were also medical professionals) ( . ) doctor(s) ( . ) teachers/school/school project ( . ) other family member ( . ) friend(s)/teammates/other players ( . ) tv (news, hockey night in canada, sports centre) ( . ) movie/documentary ( . ) personal experience with concussion ( . ) concussion experience of another person or witnessing a concussion (friend/teammate/other) ( . ) magazine article/books ( . ) professional athlete (sidney crosby/family friend) ( . ) other (p.a.r.t.y program/survey /all of the sources) ( . ) supplementary analysis knowledge of signs and symptoms. participants were given a checklist of concussion signs and symptoms and were asked to select the symptoms that they believed to be the most common after a concussion. breathing problems and diarrhea were added in as more generalized symptoms to better differentiate participants’ knowledge between these unrelated symptoms and the actual symptoms. the majority of participants revealed knowledge of the following common symptoms: headache, dizziness, confusion, memory problems, vision problems, nausea, and fatigue. loss of consciousness was considered to be one of the most common symptoms by approximately half of all participants. about % of participants thought breathing problems were among the most common symptoms and very few ( . %) thought that diarrhea was common; therefore, it did not appear that participants were responding indiscriminately. when the responses of hockey players were compared to non-players, the symptoms identified were very similar (see figure ). hockey players were significantly more likely than non-players to report that nausea (x ( , n = ) = . , p = . ) among the most common symptoms. within the hockey player sample, significantly more female than male players thought that memory difficulties (z- test, p < . ) were among the most common symptoms. there were no significant relationships between age level and symptom identification. the general trend was that a greater proportion of older than younger players correctly identified the most common symptoms and younger players were more likely to report uncommon symptoms (see figure ). column proportions z-tests between age level of hockey players revealed that significantly more pee wee (n = , . %) than midget (n = ) players checked off that diarrhea was a common concussion symptom (z-test, p < . ). the relationship between age level and breathing problems approached significance with younger players endorsing this symptom more frequently than older players (x ( , n = ) . , p =. ). figure . percentage of reported concussion symptoms by hockey players and non-players p e rc e n ta g e s symptoms players non-players figure . percentage of reported concussion symptoms by age level of male hockey players. reasons for under-reporting of concussions. see table for other frequencies of responses for the survey item asking players why they think a player may not report a concussion. the majority of hockey players ( . %) and non-hockey players ( . %) reported that a player would be most reluctant to report their concussion because they want to play. the second most common reason was that the player is not aware that they have a concussion (hockey player = %; non-players = . %). the third most common reason was that they would be afraid to let their team down, and this was a significantly more common response among non-hockey players than hockey players (x ( , n = ) = . , p = . ). the next most common reason was a fear of disappointing their coach. among the hockey players midget level players were significantly more likely than pee wee players to indicate that a primary reason for a player not reporting a p e rc e n ta g e s symptoms pee wee bantam midget concussion is because they want to play (x ( , n = ) = . , p = . ). the frequency of male and female players differed significantly on several of the reasons. a significantly greater proportion of female players than male players to indicated that players would not report their injury because they would not want to disappoint their coach (x ( , n = ) = . , p = . ) and their parents (z- test, p < . ) participants were asked to write down any other reasons that they felt a player may not want to report their injury. many of the written responses reflected the idea that the player wants to continue playing and does not want to be taken out of the game. for players who wrote this response f) was entered as a ‘ ’ in the spreadsheet if they had not already circled it. the responses included, “the player does not want to feel like a wimp”/ “doesn't want to sounds like a sissy”/“people might think you're soft”, “embarrassment”, “they are scared the coach will be mad”/ “nervous to tell the coach”, other players on the team might think you are faking it, “wants to contribute to the team”, “the player is really good”, and the player would “have to go to the hospital/doctor”. table frequency and percentage of reasons for non-reporting by participant group participant group hockey player age level reasons for non- reporting non- players players pee wee bantam midget n % n % n % n % n % disappoint coach ( . ) ( . ) ( . ) ( . ) ( . ) disappoint parents ( . ) ( . ) ( . ) ( . ) ( . ) not that bad ( . ) ( . ) ( . ) ( . ) ( . ) let team down ( . ) ( . ) ( . ) ( . ) ( . ) peer influence ( . ) ( . ) ( . ) ( . ) ( . ) wants to play ( . ) ( . ) a ( . ) a,b ( . ) b ( . ) not aware ( . ) ( . ) ( . ) ( . ) ( . ) non-hockey players were asked if they were playing any team sports at the time they completed the survey and % (n = ) of participants indicated that they were playing one or more team sports with an average of . years playing with a team and a range of years. twenty-seven percent (n = ) were not involved in team sports. the most commonly played sports were basketball (n = , . %), soccer (n = , . %), and volleyball (n = , . %). less commonly played sports were ringette (n = , . %), futsal (n = , . %), baseball (n = , . %), ball hockey (n = , . %), lacrosse (n = , . %), and rugby (n = , . %). all of the non-hockey players with a history of concussion (n = ) were involved with team sports at the time of survey completion with an average of approximately . years of experience playing with a team. given many similarities in the knowledge and behaviour of hockey and non-hockey players, additional analyses were run based on the involvement of non-players in other team sports. data from three non-hockey players who participated in contact sports were combined with the results of hockey players and then compared to the remainder of non-hockey players. the results were very similar to the hockey-player versus non-hockey player results presented above. the only additional significant difference that emerged was that a significantly greater proportion of non-players compared to contact players felt that players would not report their concussion out of fear of letting the team down (z-test, p < . ), and there was no longer a significant difference in perceived helpfulness of school/teachers for increasing concussion knowledge. chapter five – discussion this chapter extends upon the results presented in the preceding chapter. the following discussion provides a summary and interpretation of the research findings, the applied and research implications, limitations of the present study, and recommendations for future directions in this area of research. summary and discussion of findings: objective knowledge. it was predicted that the knowledge level of hockey players would be significantly higher than that of non-hockey players. this hypothesis was supported on specific questions in which players were significantly more aware of the cause and prevalence of concussions compared to non-players. of note, even though players were more aware of the prevalence of injuries, there was evidence of deficiencies in knowledge as nearly half of the players think that concussions rarely happen (once per season). without this knowledge, players may be less likely to suspect a concussion after head contact with a player or hard surface. in contrast, the hypothesis that players would be more knowledgeable about return to play guidelines was not supported. over % of players were not aware that a player must be completely recovered prior to returning to play. in comparison, % of non-hockey players were not aware of the correct return to play protocol. given the similar degree of rtp knowledge between players and non-players, it seems that information about when it is safe to rtp is not reaching players or the message is not being clearly understood by players. the implication of this knowledge deficiency is that a large number of players could resume playing before their recovery is complete, which places them at a much greater risk for re- injury, worsening of their symptoms, and prolonged recovery (cohen et al., ). it is possible that the non-hockey players sampled were particularly knowledgeable about rtp as % reported that they were playing team sports at the time that they completed the survey. the large majority of sports were non- contact in nature and when the data from those who were playing contact sports was combined with that of hockey players, there was still a relatively higher proportion of non-players who knew the correct rtp protocol. the difference, however, was not significant and the relative difference may have been an artifact of small non-hockey player sample size. the hypothesis that the knowledge level of hockey players would be significantly higher at the higher age levels of hockey was only supported for one knowledge question. this question was regarding the cause of concussions, which midget players were significantly more knowledgeable about than pee wee players. however, there were no significant differences between bantam and midget players, nor bantam and peewee players. the trend of higher knowledge by older players was consistent with other research by cusimano et al. ( ) where the older players in their sample (bantam) demonstrated greater overall knowledge scores than the younger players (atom). the differences in the current study, however, are less pronounced. older players may know more about the cause and prevalence of concussion because of more prolonged exposure to the injuries and concussions as well as with working closely with knowledgeable personnel (players at the midget level are more likely to have a certified athletic trainer working with the team than at young levels). signs and symptoms. players and non-players demonstrated a comparable degree of knowledge of the most common symptoms of concussions. however, a surprising finding was that players did not demonstrate significantly higher knowledge of the signs and symptoms compared to non-hockey players. this may reflect a weakness in current education programs. it may also be unique to the small sample size in this study, something that would need to be explored in a large sample of hockey players. approximately half of all participants believed loss of consciousness (loc) to be one of the most common symptoms. while loc is certainly a sign of concussion, it is not a common occurrence (collins et al., ). some studies have found only about - % of college and high school athletes with a concussion had a loss of consciousness (guskiewicz, weaver, padua, & garrett, ; kaut et al, ). misperceptions regarding loc have been long held and are a danger in that a player may not think that they have suffered a concussion if they were not “knocked out” and may proceed to keep playing. attitudes. severity. most players thought that concussions are as serious as or more serious than other injuries. this is an encouraging finding, particularly since not viewing concussions as a potentially serious injury is one of the most common reasons for under-reporting among athletes (mccrea et al., ). there was far more uncertainty among non-hockey players about the severity of concussions with % choosing the option “i don’t know”, and significantly fewer non-players rated concussions to be more serious than other injuries. vulnerability. the perceived likelihood of sustaining a concussion did not differ between players and non-players, which is surprising considering that players are at such a high risk. rosenbaum ( ) also found similar attitudes between high school student athletes and non-athletes. the lack of difference may be due to the common viewpoint of invulnerability among adolescents (johnson & jones, ; rosenbaum, ). while there are very few studies which have investigated children's perceptions of injury risk in sports, a recent study with junior cricket players has found a decreased perception of the personal likelihood of injury compared to the perception of risk to cricket players in general among youth aged to (white, finch, dennis, & siesmaa, ). therefore, it is also possible that the athletes in the current study have underestimated their risk of injury. the youngest players in the current study were significantly more likely to report that they were unlikely to sustain a concussion in the upcoming year. while there have been some inconsistent findings, generally perceptions of risk increase with age among adolescents (larsman et al., ). this difference may be due to increased frontal lobe development in later adolescence which facilitates anticipation of consequences (johnson & jones, ). with respect to cognitive maturation, a decrease in childhood egocentrism enables youth to take in perspectives other than their own (newman & newman, ). older adolescents are able to move beyond concrete thinking and begin to reason with more complex, abstract information and hypothetical situations when making judgments (gullota, adams, & markstrom, ). worry. hockey players were generally not very worried about sustaining a concussion in the upcoming year, with % of players reporting that they were not at all concerned. they were significantly more likely, however, to express a little bit of concern about the injury than non-hockey players, which is in keeping with their heightened risk for getting concussed. the hypothesis that ratings of the three attitudes would differ based on prior concussion experience was supported for vulnerability and worry, but not for ratings of severity. previously concussed participants reported slightly greater vulnerability to and concern about sustaining a concussion in the upcoming year than those without an injury history. those who sustain a concussion are known to be at a greater likelihood of having a subsequent concussion (buzzini & guskiewicz, ; guskiewicz et al., ), thus the reports of increased vulnerability were congruent with the actual increased risk. this was consistent with a study of collegiate athletes in contact sports that found a positive relationship between prior injury and the perceived probability of becoming injured and worry/concern about injury. as mentioned by short et al. ( ), this comparison must be made with caution as the current study explored perceptions regarding concussion specifically, rather than to sports injuries in general. symptom reporting behaviours. most of the players surveyed ( %) knew that they should stop playing and tell their coach if they suspect a concussion, which was consistent with cusimano et al.’s ( ) findings. even though most knew they should stop and tell fewer players said that they actually ‘would’ stop ( %), and only % of those who had experienced a prior concussion in hockey said that they did stop and tell someone. a quarter of those who were concussed were pulled out of the game by someone else who noticed their injury. in total, approximately % of players did not follow safe rtp guidelines (i.e. stop and tell someone). interestingly, a similar trend was present in the non-player sample where all of the non-players knew that they should stop and tell, fewer ( %) said that they would report, and even fewer ( %) of those who had a concussion said that they did stop and tell. the majority of non-hockey players were involved in team sports, therefore this pattern may reflect adherence to the sports ethic that encourages being tough and playing through pain or injury. higher proportions of non-reporting have been identified at the high school and college levels as approximately to % of athletes from various sports admitted that they did not tell anyone of their injury (kaut et al., ; rosenbaum, ). similarly, less than % of high school football players reported their injury (mccrea et al., ). the smaller proportion of non- reporting at younger levels of play may be due to coaches recognizing player symptoms and removing them from play, a stronger impetus among older players of continuing to play, or a combination of these variables. these findings reflect the common trend of concussion symptom under-reporting by athletes and add to our understanding of this problem by identifying that it is present even at young adolescent levels of play. this underscores the importance of not only education, but supporting a management system in which athletes, coaches, and parents are given clear direction about steps to take if they suffer a suspected concussion. all participants were asked why they think a player might not report their injury, and the most frequently chosen option among players was that the player wants to play and is afraid they will be benched if they tell. the second most frequent response was that a player is probably not aware that they have a concussion. letting the team down and fear of disappointing the coach were the next most frequently cited options. these results are similar to those found among high school football players except the top the reason was that they did not think their injury was that severe (mccrea et al., ). only % of minor hockey players in the present study chose a similar option. this may have been due differences in how the question was phrased between the studies (i.e. prospectively vs. retrospectively). significantly more female than male players noted that the player may be fearful of disappointing coaches and parents. this finding may reflect that males are generally socialized to suppress their fears, distress, and insecurity and are encouraged to demonstrate courage (newman & newman, ). therefore, the male participants may have been less likely to select and agree with these options. this expectation would be strongly reinforced in the environment of contact sports that values masculinity, power, and domination (waldron & krane, ). female athletes experience more difficulty measuring up to this sport ethic. as a result they may feel a greater need to prove themselves as “real athletes” to their parents and coaches. increased concern about and attention to interpersonal issues among females may also heighten this fear. non-players responses were very similar which indicates that they are aware of or could relate to why a hockey player may not want to report. among players the fear of disappointing parents, coaches, and the team speak to the strong pressures placed on player to win and “play through pain” in order to gain and maintain social approval. overall, it appears that most players possess the knowledge about recommended reporting practices, but a substantial portion is not acting in accordance with that knowledge. consistent with the current literature other factors are influencing the decision of athletes to not report symptoms or suspicions of a concussion. the present study considered the potential influence of several attitudes and opinions of players. attitudes were compared to reporting behaviour and the hypothesis that ratings of the seriousness of a concussion would be related to the intention to report a concussion in the future was not supported by this study. summary and discussion of findings: objective sources. the current survey revealed that the minor hockey players have obtained information about concussions from various sources. the most frequent sources of information were also considered to be the most helpful. the top four sources were parents, coaches, doctors, and someone with a prior concussion experience. it is very positive that hockey parents seem to be talking to their children about concussions and that coaches have taken the time to educate regarding this injury. it is also of note that those who have been concussed are talking about their experiences, perhaps after being informed about their injury by physicians. the results are similar to rosenbaum’s ( ) survey of high school athletes where parents, physicians, and personal/other experience with concussion were among the most frequent sources. friends were listed more frequently, however, and coaches were listed much less frequently than in the current study. perhaps this indicates that the coaches in the present study take the issue more seriously and are actively educating, or that over time this practice has improved. similarly, a recent study of rugby players in italy cited physicians and coaches/trainers among the most frequent sources and tv as an infrequent source. in contrast, rugby players identified school/university as a source far more frequently than the current study, while parents and other players were much less frequently reported sources (boffano et al., ). the large age range of rugby players ( - years) may explain some of these differences in sources, as well as sports specific or regional differences in how concussions are conceptualized and managed. the hypothesis that the sources of concussion information would differ between hockey players and non-hockey players was partially supported. hockey players were significantly more likely to report that they have learned about concussions from coaches and doctors. this difference makes sense given the degree of contact that hockey players would have with these sources compared to non-players. in a similar vein, older players were generally more likely to report that they have learned about concussions from these sources. in addition, male players were significantly more likely than female players to report that they have learned about concussions from coaches and the internet. it is concerning that fewer females reported receiving information from coaches, especially given that females may be more susceptible to incurring concussions and can have a longer course of recovery (dick, ). this difference may be an artifact of a small female sample and would need to be further investigated. it is possible, however, that concussions are talked about more with male players due to the expectation that males play more aggressively and would be expected to incur the injury more frequently. websites also may be more geared toward a male audience for a similar reason or it is possible that there are differences in information seeking behaviour (i.e. perhaps males are more likely to seek information from the internet). helpfulness of sources. a significantly greater proportion of hockey players than non-players reported that they have found school/teachers as not helpful. concussion information provided in school may be too general to be deemed relevant by players in the sports context. however, when the contact sports participants from the non-player sample were combined with hockey players the difference was no longer significant. a larger sample size for non-players is needed to clarify whether true differences exist. a greater proportion of pee wee than midget or bantam level hockey players rated doctors as not helpful (although not to a statistically significant degree). this finding may indicate that explanations provided by physicians are difficult for the younger players to understand. implications for research and practice the results herein can inform the process of knowledge translation, which has been appropriately referred to in the sports context as the transfer of ideas “from lab bench to sports bench” (provvidenza & johnston, , p. ). this study therefore impacts various domains from research to practical applications. research implications. this study supplements the growing body of literature on knowledge of concussions by further clarifying trends and gaps among athletes and extends what is known on this topic by exploring a younger age segment than typically chosen. the research findings highlight that younger age groups should not be overlooked in future research since there were some age level differences even within this study. for example, older players tended to have more accurate knowledge and held slightly safer attitudes (i.e. greater perceived severity of and vulnerability to the injury). the finding that younger athletes are similar to older athletes with respect to under-reporting is an important consideration for epidemiological research as incidence ratings would be underestimates for youth as well. the results of this study may benefit educational program development, evaluation, and implementation research by identifying the main sources of information for minor hockey players and areas that can be further targeted to increase the athlete exposure to accurate concussion information. the ratings of the degree of helpfulness also suggest where improvements can be made in effectively translating the information to youth. the findings also suggest that factors such as attitudes and expectations could be influencing reporting behaviour. this implies that considering theories of behaviour change and risk perception in the sports concussion literature could help with our understanding of the complexities behind athlete’s reluctance to report concussion symptoms. practical applications. there are many potential applied benefits of the current results for those involved with minor hockey and other youth contact sports. these results have particular relevance and direct applications for the two hockey clubs that participated in this study. since each of the hockey teams from the spkac contributed to the study, the results can meaningfully influence the way that the issue of concussion is conceptualized and how it is managed within the club. a summary report will be prepared for these clubs to disseminate the results, which is hoped to benefit future educational policies and programs. as cusimano et al. ( ) suggested, the many reasons that an athlete may not want to report an injury puts “added responsibility upon the coach, trainer, parents and medical staff to recognize the symptoms of concussion, to take appropriate steps of seeking medical attention and to engender a culture of healthy attitudes and behaviours amongst their players” (p. ). the specific findings and their implications for these stakeholders follows. parents, coaches, doctors can benefit from knowing that they are primary sources of information for young athletes about sports concussions. since parents are the most common source of information, programs to increase their knowledge would be an essential component for improving awareness among athletes. sawyer et al. ( ) have stated that one of the largest roles that parents can take is to reinforce safety messages. coaches are another top source for athlete’s information. hockey leagues and perhaps even government need to take an active role not only to mandate concussion education and to support the development and implementation of such programs, but to also teach coaches the most effective age-appropriate ways to pass this information onto their players. this may be an even more important implication for less competitive leagues without access to athletic trainers or other medical professionals at games. parents and coaches would benefit from the knowledge that some athletes may not report injuries out of fear of disappointing them and that this could be particularly relevant for female athletes. this implies that coaches and parents must become more aware of the expectations that they set and the ways in which approval is given to players, directly and indirectly. parents need to be aware of their own attitudes and behaviours, as well as the importance of striking a balance between supporting their child’s health with the child’s desires to advance in the sport. echlin ( ) has pointed out that it can become problematic when parents are overly invested in their child’s success as they reinforce the child’s fears and results in a decreased priority over their child’s health. on the other hand, some athletes may know that their parents will take the issue very seriously and may hide their injury out of fear of no longer being allowed to play. physicians were not only one of the most frequent sources of information, but were considered by the minor hockey players to be the most helpful for increasing their knowledge. this finding provides encouragement that they are effective in their role and that they should keep up with this. pee wee players were most likely to consider doctors as not helpful, therefore more time and care may be necessary when working with younger players to ensure their understanding. physicians have the opportunity to directly inform players who have been concussed regarding what a concussion is, how the concussion occurred, what symptoms they might expect, what the recovery process could look like, and provide advice and a plan for returning to activities. given that the second highest source of information was “someone who has had a concussion” it may be that people who have had concussions become more informed when they seek treatment and then relay that information on to others. the accuracy of this transferred information is unknown, but it is positive that the young players are learning from others. this study supports the recommendation of several researchers that physicians should be the ones to provide education to athletes, whether through programs or through pre-season work with athletes (boffano et al., ; kirkwood et al., ). knowing the areas of knowledge deficiency, as well as attitudinal or behavioural trends is also useful information for minor hockey organizations as they are responsible for setting the policies and regulations to protect the safety of players. knowing which areas that may need greater focus will allow them to put forth their resources in the areas that need it the most. the current study also supports consideration of rule changes and enforcement of those rules by referees in order to protect young players who are dependent on adults for their safety. within ice hockey there has been a lot of controversy about whether body checking should be allowed at youth levels considering the tremendous risk. mccrory et al. ( ) suggest that if a “clear-cut mechanism” of head injury exists within a sport that rule changes may be an important consideration for injury risk reduction (p. ). the incidence of concussion has been shown to increase once body checking is introduced at the pee wee level in alberta, and has not been shown to protect players against future concussions (cusimano et al., ). young players also seem to lack accurate knowledge of how prevalent concussions are (emery et al., ). in addition, the higher perceptions of invulnerability and decreased ability to anticipate consequence at this age suggest that adults need to step in and take responsibility for reducing their risk of injury. eliminating body checking at this age level would be one way to accomplish this goal. the media, sports announcers, and professional players and leagues must also become more aware and responsible for how their messages and actions influence our young players. high profile athletes who have suffered a concussion have garnered public support for the issue of concussion in the past (delaney, lacroix, leclerc, & johnston, ). sidney crosby, a role model for many young canadian hockey players, suffered two concussions within close proximity and was out of play under cautious observations of medical professionals over the course of this research study. several players listed crosby as a source of concussion information. the extent to which professional athletes with concussions influenced the knowledge of participants is unknown as the provided source “someone who had had a concussion” was a broad category which included professional athletes. cusimano et al. ( ) also point out the influence that professional leagues, players, and the media have on young athletes who emulate the opinions, expectations, and behaviours of professional athletes. the problem of getting concussion safety messages across to athletes is complex and stages of child development can be overlooked amidst the focus to win and achieve in sports. the field of psychology has much to contribute to this area and managing sports concussions management teams should involve psychologists as integral members (kontos, collins,, & russo, ). psychologists can play a role in prevention or can be recruited as consultants by sports medicine professionals at the point of injury occurrence. in terms of prevention, there has been very little application of behavioural theories and models to sports injury prevention to date, although there is much merit in doing so to increase the effectiveness of prevention interventions and maintenance of safety behaviours (mcglashan & finch, ). psychologists with expertise in development and education could contribute by working with parents, coaches, educators, and program developers to foster greater understanding of youth cognitive processes and experiences in competitive sports environments. cognitive maturity, for example, greatly impacts how youth learn, assimilate, and apply information and expectations. psychologist jean piaget lends the idea that children move from a stage of concrete to abstract thinking through adolescence where they increasingly gain the ability to formulate hypotheses (feldman, ). the process happens by gradual unfolding through physical maturation and experience, therefore while adolescents may appear as “little adults” they do not have the cognitive capacity. another prominent psychologist, david elkind, has built upon piaget’s stage model with a focus on adolescence. the idea of adolescent egocentrism is “a state of self-absorption in which the world is viewed from one’s own point of view” (feldman, , p. ) and limits the ability of adolescents to appreciate and integrate the perspectives of others. elkind also proposed a type of distorted thinking called personal fables, which are the beliefs by adolescents that what is happening to them is unique and is shared by no one else. these beliefs and cognitive processes can lead to risk-taking and decreased likelihood of taking preventative measures by thinking that they are personally invulnerable to risks (i.e. ‘it happens to other people, but won’t happen to me’) (feldman, ). over- inflated self-efficacy (bandura, as cited in kontos et al., ) and peer influence can also further lead to risky behaviour. psychologists can therefore work with athletes to help them develop “realistic appraisals of risk” and accurate self-efficacy for under- or overconfident youth (kontos et al, , p. ). psychologists may also play a role in the aftermath of injury. sports psychologists can play an integral role with educating young athletes to help them understand the confusing information about concussions as well as what to expect while recovering, normalize their symptoms and apprehension, and reinforce rtp decisions from medical professionals and help athletes cope. this would be particularly relevant where there are lasting disruptive symptoms that affect educational or social attainment. the emotional impact and sense of loss from having to withdraw from participation in sports due to multiple concussions or recurring symptoms can be devastating and also may prompt families to seek support from a school psychologist or private counselling. limitations and considerations for replication the present study is limited by the disadvantages of survey research, such as the reliance on self-report which can lead to inaccuracies and reporting bias. another limitation was in the design of the study, which employed convenience samples. this sampling method limits the representativeness that the samples are of the population of elite minor hockey players. as noted in the results, the age of players was not normally distributed which reflects a concern with the representativeness of the sample. a majority of the hockey player participants came from the spkac, which may have introduced selection bias. given that the spkac was willing to have all of the teams participate in this study, it is possible that this club takes a more proactive approach the issue of concussions than other clubs and may have more educated staff and participants than the average hockey club. the same issue is apparent with the control sample that was entirely formed of students from one school that may have more or less concussion exposure or hockey knowledge than students from other schools. as noted in our results, the non-player group had a significant number of individuals who were participating in recreation sports and therefore, was likely to have better knowledge of sports injuries like concussions. using a sample of adolescents who are involved in non- contact sports would make for a better comparison. low return rate of parental consent forms turned out to be a great barrier to obtaining adequate sample sizes, although the completion rate was very high. the low response rate was particularly prominent with the non-hockey player sample and presented a substantially greater challenge with older students. small sample size thus introduces sampling error when making comparisons across groups and limits the generalizability of the results to the larger population. the lack of female pee wee team in the convenience sample was also a disadvantage for gender comparisons in particular. a replication of the study could employ a variety of methods for data collection to enhance the variability within the samples. for example, approaching various hockey clubs in the area and enrolling teams/parents at pre- season meetings, tournaments, or hockey events/camps. acquiring a larger control sample would be essential to ascertain whether the findings of this study are generalizable. with respect to using a student sample, it may be more advantageous to gather parental consent at the beginning of the year before too many activities begin. offering a form of incentive for those who participate may also encourage student participation, such as bonus marks for their health or physical education class. alternatively, the idea of obtaining proper approval to waive the parental consent would make the collection much easier and limit the potential of selection bias. this would be a viable request in this case, as the survey does not ask intrusive questions. in fact, approval was obtained by the office of the superintendent of the elk island catholic school board to administer without parental consent in this study; however it was very late in the study for new schools to be approached by the time that the approval was granted. non- players could be also be accessed through community centres, or through non- sport extracurricular groups/clubs where youth of similar ages and socioeconomic status could be recruited. future directions gender differences in concussion incidence, presentation, and recovery between athletes in contact sports is an area that is beginning to receive research attention. the current study was limited in terms of the number of female athletes, however some differences were found in the reasons for reporting, and sources of information. exploring knowledge and perspectives in greater depth would help to clarify if differential assessment, management, and even education are required for male and female athletes. exploring the views of the parents of minor hockey players is an area that also requires increased attention. given that parents were a major source of concussion information, ascertaining their levels of knowledge as well as their attitudes and opinions would be an important contribution to the literature. collecting information from parents and their children at the same time would allow for the examination of the transfer of knowledge and attitudes. given the finding that school/teachers were not among the most frequent sources for concussion knowledge raises the question about how much attention and instruction are devoted to the topic of concussions and sports concussions throughout a child’s development. beyond the curriculum, the knowledge levels and views of school personnel are important to investigate since our youth spend much of their time at school. conclusions overall, players seem to have foundational knowledge that concussions injure the brain and they can identify common signs and symptoms. while they rate the injury as more serious than non-players and report greater concern over the injury, the issues of perceived invulnerability and deficiencies in knowledge about the prevalence and proper management signify that increased efficiency of knowledge translation is needed. the results of the current study support the widespread notion among researchers and the medical community that implementing educational initiatives are imperative for the prevention of sports concussion and reduction of long-term or complicated outcome after a concussion (mccrory et al., ). since players obtain information about concussions from a variety of sources, consistency in the dissemination of information is crucial continuing to reduce misconceptions. cultural and societal obstacles towards this goal also became more apparent and cannot be overlooked. the overall desire to play and motivation to stay in the game can be more powerful than doing what a person knows they ‘should’ do for their safety or what they think they ‘would’ do. this is a trend that has been commonly observed in higher age level athletes in hockey and other sports, thus we must consider the impact of the cultural and societal expectations and their impact on the perspectives and behaviours of our youngest players. the safety of players while they develop their skills and strive to advance in placement is therefore a collaborative social responsibility where the least amount of responsibility should be placed on the child (echlin, ; emery et al., ). an environment must be created where athletes are less fearful and reluctant to reporting injuries. rules and regulations put in place by government, hockey leagues, and executives impact the protocols that coaches and athletic trainers follow. these protocols along with public health standards of practice help raise awareness for parents to make the best decisions for the safety of their children and must be standardized and consistent so that it becomes more socially acceptable for athletes to report suspected injuries. a new law in philadelphia requires yearly training for coaches and parent signing of an information sheet as well as legal implications for not adhering to rtp guidelines are a large step in the right direction (boccella, ). this is evidence that the issue of sports 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( ). body talk: male athletes reflect on sport, injury, and pain. kinesiology and physical education faculty publications, , - . retrieved from http://scholars.wlu.ca/ kppe_faculty/ http://dx.doi.org/ . % fs http://scholars.wlu.ca/kppe_faculty/ http://scholars.wlu.ca/kppe_faculty/ appendix a parent information and consent letter project title: investigating minor hockey players’ knowledge about and attitudes toward concussion principle investigators: andrea perra, master’s student, department of educational psychology, university of alberta ( ) - , (aperra@ualberta.ca) dr. martin mrazik, department of educational psychology, university of alberta ( ) - , (mrazik@ualberta.ca) dear parent, my name is andrea perra and i am a master’s student in the faculty of education at the university of alberta. i am currently conducting research, which is part of my master’s degree, under the supervision of dr. martin mrazik. i am writing to ask for your consent to have your child participate in my research. the purpose of the present study researchers from the university of alberta will examine concussion understanding among peewee, bantam, and midget level athletes as well as non-hockey playing youth. the purpose of the study is to better understand minor hockey players’ knowledge, attitudes, and concussion reporting behaviour. the results will help to identify areas where education is needed. ultimately, our goal is to reduce the number of concussions. what is a concussion? concussions are brain injuries caused by a blow to the head. this changes the way brain cells function, leading to symptoms that can be physical (headaches, dizziness), cognitive (problems remembering or concentrating), or emotional (feeling depressed). concussions can have short-term or long-term impact on athletic performance. why study concussion? hockey is one of the most popular sports world-wide. researchers have suggested that concussions are on the rise among minor hockey players. recent research estimates that concussions account for about % of injuries. many concussions improve on their own; however, some athletes are at greater risk for complex and long-term problems. young athletes generally take longer to recover and can experience worse symptoms than adults. these outcomes can affect their ability to play and keep up with school and their social interests. continuing to play while injured is a major factor that can make the outcome worse. athletes may continue to play if they are not aware that they are injured, or if they want to hide their symptoms. these are recognized problems among athletes at the high school level and above; however, more research is needed with younger athletes. in addition, little is known about what the general population of youth, who are also impacted by concussions, understand and think about the injury. therefore, surveying non-hockey players will provide valuable insight and a baseline to compare the athletes to. what will be involved? mailto:aperra@ualberta.ca mailto:lestidea@ualberta.ca if you agree, your child will take part in a minute session, during which he or she will complete a short ( item) paper-and-pencil questionnaire. along with the knowledge, attitude, and behaviour questions, your child will also be asked their age, whether they have played hockey or if they play other sports, number of years playing organized sports, and history of prior concussion. this session will take during a health or physical education class at your child’s school. the researcher will provide your child with a brief overview explaining that they will be asked questions about what they think and know about sports concussion. your child will be asked if they agree to participate and will be ensured that their responses will be kept confidential and anonymous. it is highly unlikely that the questions will cause your child discomfort; however, researchers will be available to talk to if your child becomes upset. if your child reports serious health concerns that need medical attention, you will be contacted and given suitable referrals. also, if there is reason to suspect serious harm to your child, i am obligated to notify the appropriate persons. participation in this study is voluntary, and your child is free to withdraw at any time. incomplete surveys will be destroyed and the data will not be used in the study. your child’s name will not appear on the questionnaire and the identity of participants will not be revealed in any report produced from this study. all information collected will be treated confidentially and will be stored in a secure location in compliance with the university of alberta standards for the protection of human research participants. the information will be destroyed five years after the completion of this project. the findings from this research are intended to be used in my master’s thesis, as well as in research articles and presentations. only group results from all participants will be shared and published. a summary of findings will be available to interested parents when the study is complete. parents can request a copy of this summary by contacting me via email (aperra@ualberta.ca) or phone ( - - ). if you consent to allow your child to participate in this study, please complete and sign the consent form. please return the completed consent form directly to the teacher or with your child, and keep a copy for yourself. if you have any questions or concerns about the study please contact me or my supervisor, dr. martin mrazik, via email (mrazik@ualberta.ca) or phone ( - - ) at your earliest convenience. if you have any questions or concerns about you or your child’s rights as a participant, or how this study is being conducted, you may contact the university of alberta’s research ethics office at - - . this office has no affiliation with the study investigators. i thank you for sharing in the effort to promote well-being and injury prevention among our youth and young athletes. andrea perra department of educational psychology university of alberta email: aperra@ualberta.ca phone: - - please return this form with your child parental consent form project title: investigating minor hockey players’ knowledge about and attitudes toward concussion principle investigators: andrea perra, master’s student, department of educational psychology, university of alberta ( ) - , (aperra@ualberta.ca) dr. martin mrazik, department of educational psychology, university of alberta ( ) - , (mrazik@ualberta.ca) please answer the following questions: parent/guardian’s name: _________________________ child’s name: _______________________ child’s age: ________ has your child played on a hockey team within the last year (recreational or elite levels)? yes no yes no do you understand the benefits and risks in taking part in this research study? ___ ___ have you had an opportunity to ask questions and discuss this study? ___ ___ do you understand that you are free to leave the study at any time without having to give a reason? ___ ___ do you understand the issue of confidentiality? ___ ___ i agree to have my child take part in this study: yes no ________________________________________________ ____________________ parent or guardian’s name (please print) today’s date ________________________________________________ parent or guardian’s signature appendix b mailto:aperra@ualberta.ca mailto:lestidea@ualberta.ca information and assent form faculty of education university of alberta edmonton, ab, t g g researcher information my name is andrea perra and i am a student at the university of alberta. i am inviting you to take part in a research project that i am working on with dr. martin mrazik. this project is a part of my master’s of education program at the university. purpose you are being asked to join in a research study about what youths your age know and think about sports-related concussions. what will you be asked to do? if you agree, you will be asked to fill out a questionnaire which will take about minutes. please do not write your name on the questionnaire. i will not tell your parents or anyone else what your answers are. your personal information will not be shared with anyone or written in any reports. you do not have to be in this study and no one will be upset with you if you decide not to take part. even if you start, you can stop later if you want. you can ask questions about the study at any time. this form and the questionnaire will be kept in a safe place for five years after this study is finished. then they will be destroyed. benefits if you decide to take part in the study, you will be helping to increase what researchers know about sports concussions. we hope that this helps to make sports and other physical activities safer in the future. risks it is not likely that answering the questions will make you feel uncomfortable. if you do feel uncomfortable, you can talk about it with the researchers. if you have any questions or concerns about this study, please feel free to contact me by email (aperra@ualberta.ca) or phone ( - - ) or my supervisor, dr. martin mrazik, by email (mrazik@ualberta.ca) or phone ( - - ). thank-you very much for your time, andrea perra department of educational psychology university of alberta informed assent form this assent form will not be accepted without parental/guardian consent. please answer the following questions: yes no do you understand that the researcher will be gathering information about what youths my age know and think about sports-concussions. ___ ___ do you understand the benefits and risks in taking part in this research study? ___ ___ have you had a chance to ask any questions you have about the study? ___ ___ do you understand that you are free to leave the study at any time without having to give a reason? ___ ___ do you understand that your information and answers will not be shared with anyone? ___ ___ i agree to take part in this study: yes no ____________________________________________ ___________________ your name (please print) today’s date ____________________________________________ your signature appendix c athlete concussion questionnaire date: ________ information how old are you? ________________ please circle: male or female what level of hockey are you in this year? ________________________________ how many years have you been playing hockey with a team? _________________ have you ever had a concussion during any activity? (please circle) yes no i don’t know if yes, did you see a doctor? yes no i don’t remember read the questions carefully and circle the best option. . a concussion is: a) an injury to my brain b) an injury to my spinal cord c) a cut or bruise on my skin d) i don’t know . to have a concussion a player: a) has to lose consciousness (get knocked out) b) has to get a direct blow to their head c) feels badly after any hit d) has to have symptoms (like headaches, feeling dizzy) after a hit to the head . if you hit your head during a game and think you have experienced a concussion, what would you do? a) stop playing and tell the coach or trainer b) not tell anyone and keep playing no matter what c) keep playing the game and see how i feel d) tell the coach/parent after the game e) not tell anyone unless my symptoms get really bad f) tell a friend but nobody else . if you have ever had a concussion before, please answer this question. what did you do the last time you got a concussion in hockey? (please be honest. remember, your answers are confidential.) a) stopped playing and told my coach or trainer b) told the coach/parent after the game c) kept playing the game and waited to see how i felt d) told a friend but nobody else e) did not tell anyone until my symptoms got so bad that i couldn’t play f) somebody else noticed my concussion or symptoms and pulled me out of the game . from what you have been told, what should a player do if they think they got a concussion? a) stop playing and tell a coach or trainer b) tell the coach/parent after the game c) keep playing the game and wait to see how they feel d) tell a friend but nobody else e) not tell anyone unless their symptoms get so bad that they can’t play . sometimes a player does not want to tell the coach if they think they have a concussion. this is most likely because: (you can circle more than one option) a) the player’s coach might become disappointed in him/her b) the player’s parents might become disappointed in him/her c) concussions are not that bad of an injury d) the team is counting on the player to win games e) most athletes wouldn’t tell the coach, so he/she doesn’t want to either f) the player really wants to play and is afraid he/she might get benched if he/she tells the coach g) the player does not know for sure that he/she has a concussion h) please write any other reasons_______________________________________ . a player can return to play after a concussion: a) when his/her symptoms are mostly better b) when he/she feels completely better c) when his/her symptoms are not worsened by activity d) for the next game, as long as it’s at least days later . in your opinion, compared to other sporting injuries, concussions are: a) less serious b) as serious as other injuries c) more serious d) i don’t know . how often do you think players get concussions playing hockey at your level? a) often (several times each game) b) sometimes (once a game) c) rarely (once a season) d) never . how likely is it that you could get a concussion during a hockey game or practice this year? a) likely b) somewhat likely c) unlikely d) i am skilled at hockey, so it probably wouldn’t happen to me . how worried are you about getting a concussion this year? a) not at all b) a little bit c) quite a bit d) very worried . what do you think most people would feel like if they got a concussion? please check off all the options below that you think are most common. . this question asks where you have learned about concussions. these are called sources. if you say ‘yes’ to any source of information listed below, then please circle the number that describes how helpful you found the information ( , , or ). have you learned about concussions from: a) coach(s)? yes no if you circled yes, how helpful was the information? b ) parents(s)/ guardian(s)? yes no if you circled yes, how helpful was the information? c) doctor? yes no if you circled yes, how helpful was the information? d) teammate(s)/ friend(s)? yes no if you circled yes, how helpful was the information? e) internet? yes no if you circled yes, how helpful was the information? f) tv or movie? yes no if you circled yes, how helpful was the information? g) school/ teacher? yes no if you circled yes, how helpful was the information? h) someone who has had a concussion? ___loss of consciousness/knocked out ___headaches ___confusion ___diarrhea ___nausea or throwing up ___blurred vision ___feel tired a lot of the time (fatigue) ___breathing problems ___balance problems/ dizziness ___memory problems not helpful moderately helpful very helpful not helpful moderately helpful very helpful (e.g. a teammate, professional athlete, friend, or family) yes no if you circled yes, how helpful was the information? i) have you learned about concussions from any other sources that are not listed above? please write__________________________________________________________ . which source has helped you the most to learn about concussions? ___________________________________________________________________ thank-you for your participation! appendix d concussion questionnaire date: ____________ information how old are you? ________________ please circle: male or female have you played on a competitive hockey team in the last year? yes or no do you play any other team sports? yes or no if yes, which sports? ________________________________________________ how many years have you played sports with a team? ______________________ have you ever had a concussion during any activity? (please circle) yes no i don’t know if yes, did you see a doctor? yes no i don’t remember read the questions carefully and circle the best option. . a concussion is: a) an injury to my brain b) an injury to my spinal cord c) a cut or bruise on my skin d) i don’t know . to have a concussion a hockey player: a) has to lose consciousness (get knocked out) b) has to get a direct blow to their head c) feels badly after any hit d) has to have symptoms (like headaches, feeling dizzy) after a hit to the head . if you hit your head during a physical activity or sports game and think you have experienced a concussion, what would you do? a) stop playing and tell an adult (like a coach or parent) b) not tell anyone and keep playing no matter what c) keep playing and see how i feel d) tell the coach/parent after i’m finished the activity e) not tell anyone unless my symptoms get really bad f) tell a friend but nobody else . if you have ever had a concussion before, please answer this question. what did you do the last time you got a concussion during a physical activity? (please be honest. remember, your answers are confidential.) a) stopped playing and told an adult (like a coach or parent) b) told an adult /parent after the game c) kept playing and waited to see how i felt d) told a friend but nobody else e) did not tell anyone until my symptoms got so bad that i couldn’t play f) somebody else noticed my concussion or symptoms and had me stop what i was doing. . from what you have been told, what should a hockey player do if they think they got a concussion? a) stop playing and tell a coach or trainer b) tell the coach/parent after the game c) keep playing the game and wait to see how they feel d) tell a friend but nobody else e) not tell anyone unless their symptoms get so bad that they can’t play . sometimes a minor hockey player does not want to tell the coach if they think they have a concussion. this is most likely because: (you can circle more than one option) a) the player’s coach might become disappointed in him/her b) the player’s parents might become disappointed in him/her c) concussions are not that bad of an injury d) the team is counting on the player to win games e) most athletes wouldn’t tell the coach, so he/she doesn’t want to either f) the player really wants to play and is afraid he/she might get benched if he/she tells the coach g) the player does not know for sure that he/she has a concussion h) please write any other reasons_______________________________________ . a hockey player can return to play after a concussion: a) when his/her symptoms are mostly better b) when he/she feels completely better c) when his/her symptoms are not worsened by activity d) for the next game, as long as it’s at least days later . in your opinion, compared to other sporting injuries, concussions are: a) less serious b) as serious as other injuries c) more serious d) i don’t know . how often do you think players get concussions playing hockey at your age level? a) often (several times each game) b) sometimes (once a game) c) rarely (once a season) d) never . if you were to play hockey, how likely is it that you could get a concussion during a hockey game this year? a) likely b) somewhat likely c) unlikely d) i am skilled, so it probably wouldn’t happen to me . how worried are you about getting a concussion this year? a) not at all b) a little bit c) quite a bit d) very worried . what do you think most people would feel like if they got a concussion? please check off all the options below that you think are most common. . this question asks where you have learned about concussions. these are called sources. if you say ‘yes’ to any source of information listed below, then please circle the number that describes how helpful you found the information ( , , or ). have you learned about concussions from: a) an adult (like a coach)? yes no if you circled yes, how helpful was the information? b ) parents(s)/ guardian(s)? yes no if you circled yes, how helpful was the information? c) doctor? yes no if you circled yes, how helpful was the information? d) teammate(s)/ friend(s)? yes no if you circled yes, how helpful was the information? e) internet? yes no if you circled yes, how helpful was the information? f) tv or movie? yes no if you circled yes, how helpful was the information? g) school/ teacher? yes no if you circled yes, how helpful was the information? ___loss of consciousness/knocked out ___headaches ___confusion ___diarrhea ___nausea or throwing up ___blurred vision ___feel tired a lot of the time (fatigue) ___breathing problems ___balance problems/ dizziness ___memory problems not helpful moderately helpful very helpful h) someone who has had a concussion? (e.g. a teammate, professional athlete, friend, or family) yes no if you circled yes, how helpful was the information? i) have you learned about concussions from any other sources that are not listed above? please write__________________________________________________________ . which source has helped you the most to learn about concussions? _________________________________________________________________ thank-you for your participation! not helpful moderately helpful very helpful scientific abstracts objectives: we aimed to create an ar application that has informative content designed to educate users on the topics of basic brain anatomy and function. furthermore, we aimed to increase the users understanding of the complete impairment of fatigue by creating a short video that describes living with fatigue from the patient’s perspective. methods: the application was created using medical scan dataset, a variety of d modelling software, and a game engine to create a functional and interactive augmented application. the short video regarding a patient’s perspective on liv- ing with fatigue was developed in collaboration with the glasgow arthritis involve- ment network patient partners. in order to determine if the application met its primary objectives a pilot test was conducted on participants. after consenting to taking part in the study, individuals were guided through a pre-application test, the use of the application itself and finally a post-application test. results: initial results from the pilot test showed promise in the educational potential of the application. with regards to the questions pertaining to the brain anatomy, the percentage of questions answered correctly increased from % in the pre-test to % in the post-test. furthermore, after using the applica- tion the participants reported a significant increase in their confidence for their answers. an additional six questions ascertained a participants perceptions of fatigue. from these questions, the answer that was most significantly changed after use of the application, was in relation to the impact that fatigue has on a patient’s quality of life (t-test p= . ). after use of the application participants’ opinions changed to reflect the fact that fatigue can completely impair a per- son’s quality of life, showing an increase in their understanding of the debilitat- ing nature of fatigue. conclusion: this research explored the development and effectiveness of an ar application that was centered around fatigue and basic neuroanat- omy education within the general population. from the pilot test conducted we are able to report that the application was successful in delivering edu- cational material about brain anatomy and was successful in increasing awareness about the impact that fatigue can have on an individual’s quality of life. acknowledgments: the glasgow arthritis involvement network (gain) disclosure of interests: none declared doi: . /annrheumdis- -eular. op -pare a paw? yes, thank you an animal assisted intervention (aai) pilot project for children with juvenile idiopathic arthritis (jia) u. viora* , p. ponzio , m. t. mascarino , b. picco , p. guiso , e. battista , s. martino , d. montin , m. dellepiane , g. rosso . amar piemonte, chieri, italy; university of turin, veterinary science, grugliasco, italy; amar piemonte, torino, italy; centro studi te.ca., chieri, italy; university of torino, torino, italy; ao città della salute e della scienza - oirm hospital, torino, italy background: animal-assisted interventions (aai) is the new way to indicate what was previously known as “pet therapy”, as activities can be done either with the conventional “pets” (dogs, cats and rabbits) or with horses and donkeys. children with jia have several problems in terms of adherence both due to the atavistic fear of the needle and due to nausea and vomiting - the most important side effects of methotrexate – often since the - days before the assumption to immediately after it. sure that animals can help children to forget this fear and to avoid the psycolog- ical conditions which enhance nausea, for the first time in italy (and probably in europe) it was designed a specific aai program for these children. objectives: to promote a general state of psycho-physical well-being in children and families about: manage of therapy; reduce discomfort and anxiety caused by entering hos- pital; improve self-esteem and the response to the stress generated by the execution of therapy and disease management; strengthen communication and socialization; stimulate the affective area through the activities of animal care. methods: dogs and cats are part of the recreational activities once a week in an equipped area in the oirm hospital (no alternative gateway was needed). paediatric rheumatologists selected two different groups of children: the first one ( children in the pilot study) every days; the second one ( children) every month; the selection was made looking at the therapeutic scheme. every session, one hour, has clearly distinct stages: welcome and organization: children say hello to dogs and cats, open the tool- kits specifically designed for the intervention, express their state of mind and are encouraged to tell their own stories. therapy: parents prepare and inject the drug to their children under medical or health professional control without discontinuation of the activities with animals. play and socializing: children are involved in petting and other activities with animals; they are also involved in manipulative activities (design, puppets shows, modelling clay, animal care, ball retriving, etc). this step has the aim to relieve stress and discomfort due to medical procedures. visual analogic scales (vas) were part of the toolkit, to let the researchers eval- uate the effects of the activity directly from the children experience. for the first time, we will control also the animal health status and wellness con- dition monitoring behavioural parameters and salivary cortisol level during each session. results: the pilot project started in october and nowaday we closed meetings, on october, on november, on december and on january, with the participation of dogs (golden and labrador retriever) and cat (devon rex) in each one. all children love to play with animals, seek their closeness at the time of therapy and enjoy playing all together with the dogs; no one cry or refuse therapy and, since the third session, no one has nausea before, during or after the injection. parents have reached a certain level of confidence: they stay quietly in the waiting room or go away to have a drink or to run an errand (it becomes a moment of relaxing for them too). animals remain in healthy and wellness conditions during the activity. conclusion: these preliminary data seem that aai to be useful in helping patients in jia to overcome some problems related to their pathology. disclosure of interests: ugo viora: none declared, patrizia ponzio: none declared, maria teresa mascarino: none declared, barbara picco: none declared, paolo guiso: none declared, eleonora battista: none declared, silvana martino: none declared, davide montin speakers bureau: not rele- vant for the topic, marta dellepiane: none declared, germana rosso: none declared doi: . /annrheumdis- -eular. figure . example of material change upon selection of occipital lobe option figure . augmented brain model scene using brain model as trigger o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://a rd .b m j.co m / a n n r h e u m d is: first p u b lish e d a s . /a n n rh e u m d is- -e u la r. o n ju n e . d o w n lo a d e d fro m http://ard.bmj.com/ wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . 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"undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ geriatrics nursing (march-april) geriatric nursing, volume , number geriatricgeriatric nursing vol. , no. • march/april from the editor losing and retrieving priscilla ebersole newsview calendar drug consult dementia treatment update marti d. buffum and john c. buffum nutrition and well-being relationship of dementia and body weight peggy k. yen home health care dementia: complex care needing ongoing assessment tina m. marrelli book reviews marianne laporte matzo ngna section ngna news robin e. remsburg and neva l. crogan incorporating medication regimen reviews into the interdisciplinary care planning process judy binch, ron beamon, stephanie clontz, patti goodwin, heather hartwig, ratna kolhatkar, mike list, and shirley s. travis although many long-term care providers may view medication utilization reviews negatively, this article describes an innova- tive approach that includes medication reg- imen review in the larger context of resi- dent care planning. ncgnp section pharmacology update ann schmidt luggen research review ann schmidt luggen gnp care guidelines ann schmidt luggen reader services information for authors information for readers departments geriatric nursing, volume , number national gerontological nursing associuation national conference of gerontological nurse practitioners geriatric nursing (issn - ) is published bimonthly by elsevier inc. park avenue south, new york, ny - . months of issue are february, april, june, august, october, and december. business and editorial offices: s independence mall west, suite e, philadelphia, pa - . accounting and circulation offices: sea harbor drive, orlando, fl - . periodicals postage paid at orlando, fl , and additional mailing offices. postmaster: send address changes to geriatric nursing. elsevier periodicals customer service, sea harbor drive, orlando, fl - . visit our web site at www.mosby.com/gerinurs. official publication of development of nurse competencies to improve dementia care christine l. williams, kathryn hyer, annette kelly, sue leger-krall, and ruth m. tappen as the number of elders needing dementia care increases, the demand for skilled care providers will require new competency-based curriculum to meet the demand for training. falls associated with dementia: how can you tell? deanna gray miceli post-fall assessment of an individual with dementia differs from the standard post- fall assessment of an older adult without dementia. early detection of fall events is crucial, but is especially important in the individual with dementia. imposed versus involved: different strategies to effect driving cessation in cognitively impaired older adults kathleen jett, ruth m. tappen, and monica rosselli giving up driving can be a particularly difficult issue for the cognitively impaired driver. the skilled nurse knows when and where involved versus imposed cessation is appropriate. subcortical vascular dementia donna fladd vascular dementia is the second most prevalent type of dementia in the united states today. its presentation is subtle and can be mistaken for depression. this article provides a comprehensive review of subcortical vascular dementia to assist the nurse with differential diagnosis. the frail elderly community- based case management project cheryl duke as the frail elderly population continues to increase, health care providers will be challenged to develop new models of care delivery for this unique population. this project demonstrates successful outcomes from one such model. feature articles editor priscilla r. ebersole, phd, rn, faan rollingwood dr. san bruno, ca fax: ( ) - e-mail: ebersole@sfsu.edu managing editor leslie j. flatt issue manager amy m. clark journal composition designer penny dietrich research briefs marti d. buffum, dnsc, aprn, bc, cs graham mcdougall, phd, cs, rn, faan columnists tina m. marrelli, msn, ma, rn marti d. buffum, dnsc, aprn, bc, cs john c. buffum, pharmd, bcpp peggy k. yen, rd, ld, mph book review editor marianne laporte matzo, phd, aprn, bc, gnp, faan board members mathy mezey, phd, rn, faan, fgsa barbara schrupp, rn, bsn, cdona/ltc joyce springate, edd, rn, msc, bn national gerontological nursing association bronwynne c. evans, phd, rn, cns susan j. loeb, phd, rn jacquelyn m. sullivan, msn, gnp national conference of geriatric nursing geriatric nursing, volume , number gerontological nurse practitioners ann schmidt luggen, phd, gnp barbara resnick, phd, crnp, faan, faanp mailto:ebersole@sfsu.edu geriatric nursing, volume , number communication communications regarding original articles and editorial man- agement should be addressed to priscilla r. ebersole, phd, rn, faan, editor, geriatric nursing, rollingwood dr., san bruno, ca ; ebersole@sfsu.edu. abbreviated instructions for authors appear in each issue. the full instructions for authors appear annual- ly in the july/august issue of the journal. customer service (orders, claims, online, change of address): elsevier periodicals customer service, sea harbor drive, orlando, fl - . tel: ( ) - (u.s. and 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products liability, negligence or otherwise, or from any use or operation of any methods, products, instructions or ideas contained in the material herein. because of rapid advances in the medical sciences, in particular, independent verification of diagnoses and drug dosages should be made. although all advertising material is expected to conform to ethical (medical) standards, inclusion in this publication does not constitute a guarantee or endorsement of the quality or value of such product or of the claims made of it by its manufacturer. indexed or abstracted in cumulative index to nursing & allied health literature (cinahl), current advances in ecological sciences, current literature on aging, hospital literature index, international nursing index, international pharmaceuti- cal abstracts, nutrition research newsletter, and psychological abstracts. microform edition available from proquest information and learning, n. zeeb rd., ann arbor, mi - . information for readers geriatric nursing mailto:ebersole@sfsu.edu mailto:healthpermissions@elsevier.com http://www.elsevier.com/locate/permissions mailto:elspcs@elsevier.com http://www.mosby.com/gerinurs http://www.elsevier.com mailto:media@elsevier.com http://authors.elsevier.com mailto:authorsupport@elsevier.com mailto:authorsupport@elsevier.com mailto:reprints@elsevier.com http://www.mosby.com/gerinurs geriatric nursing, volume , number when i was young i didn’t dream there would be a day when the tip of one finger could control a vast amount of information. yesterday i deleted e-mail messages by selecting all messages rather than just junk. later in the day, i retrieved a history of dementia with a few finger taps on google.com (search: history of dementia, www.sciencedirect.com/science). but how did i recover from that earlier blunder? i have a backup system—our wonderful man- aging editor, leslie flatt, who receives almost everything that is of importance to gn. what possible relevance does this have to dementia? a great deal. first, and most important in my mind, is for- getfulness panic. “oh, dear! what have i lost?” age-associated memory impairment (aami) exists and is normal for most people after age , although some -year-old gerontologists may quibble about this. the average (as if there is such a person) older person will forget details that are unimportant—and maybe a few important ones—and often will not regis- ter automatic actions or insignificant events that occur each day, such as, “did i take my eyedrops this morning?” or “where did i put my glasses?” adaptive mechanisms have also developed automatically for most of these people, however. ordinarily, elders develop backup systems that work beautifully for them. the vial of eyedrops is placed different- ly in the medicine cabinet after the morning dose than before. several pairs of glasses are placed at strategic points. everything that is important is written down. grandchildren can be tapped for their more exacting, although often misinterpreted, memory of whatever happened last week. when one walks down- stairs and forgets why, one simply turns around and goes back up; exercise is a won- derful mental and physical restorative. the fear of dementia is overactive, and many elders live in dread of developing alzheimer’s disease or a related disorder. each little lapse of memory triggers an anxi- ety reaction that blocks clear thought. the fear of an irreversible dementia is serious because if we lose our memory, we lose our personhood. we “lose it.” we lose “i.” my -year-old granddaughter often wants to talk about when she was a baby. initially, i thought her focus on that was a trifle unusual, but now i see it as filling in the amnesia of babyhood. she wants to know who she was and what she did, and especially how “adorable” she was. so yesterday we retrieved a dozen or so photos of her babyhood and talked about each one of them—why, when, and where they were taken, and so forth. these ideas can just as easily be trans- ferred to working with an elder who has mild to moderate dementia; maybe even beyond that. whatever threads of memory may be awakened will make life a little bit more worth living, and even if none are stirred, the special attention will feel good. so who has time to do that? visual images, foods, objects, fragrances, memorable music—all can be tools of stimu- lation, used carefully to avoid overload and to enrich daily existence. how about assign- ing group leadership to select aides? when dealing with individuals in the home, nurses are detectives, seeking small clues in the environment that may activate thought- provoking comments to an elder or a family member. irreversible dementias, particularly alzheimer’s disease, have been the subject of a great deal of geriatric research. nurses and family members are the people who must deal with the manifestations on a daily basis. we are pivotal in identifying the reality of loss, preventing unnecessary loss, and acti- vating methods of personhood retrieval. we are the “backup system.” - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . from the editor losing and retrieving geriatric nursing priscilla ebersole, phd, rn, faan http://www.sciencedirect.com/science http://google.com newsview geriatric nursing, volume , number report on pharmacological treatment of dementia the agency for healthcare research and quality (ahrq) recently released the summary of a new report, pharmacological treatment of dementia. the report presents evidence that drug therapy for dementia can improve symp- toms and outcomes, including global assess- ment, cognition, behavior, mood, and quality of life. some deficiencies in the research were noted such as insufficient evidence of the effects of drug treatment on delaying the onset or progression of dementia and the lack of drug-to-drug comparison studies. a print copy of the summary and report are available by sending an e-mail to ahrqpubs@ahrq.gov. diabetes and dementia diabetes can accelerate dementia, which in itself hinders the ability to manage one’s blood sugar. early detection and treatment of dia- betes could help stall the effects of cognitive decline, including alzheimer’s disease, accord- ing to a recent article posted at the sage crossroads web site. the full article is available at www.sagecrossroads.net/public/news/show_ article.cfm?articleid= link between inappropriate medications and elevated death rates in nursing home patients according to a study recently reported in the january , , issue of the archives of internal medicine, elderly nursing home resi- dents given potentially inappropriate drugs intermittently over a -month period had an almost % greater likelihood of dying during the last month of that period than similar resi- dents not administered possibly inappropriate medications. the study, conducted by re- searchers at the federal government’s agency for healthcare research and quality (ahrq), is the first known analysis in the united states of the effects of potentially inappropriate medica- tion prescribing in nursing homes based on nationally representative survey data. the most common drugs involved were propoxyphene (narcotic painkiller), amitriptyline (antidepres- sant), diphenhydramine and cyproheptadine (antihistamines with strong anticholinergic effects); hyroxyzine (antianxiety drug), oxybu- tynin (bladder muscle relaxant), ranitidine (antacid), and iron supplements. for a pdf file of the article or for questions, contact bob isquith at bisquith@ahrq.gov or call ( - . forum develops initiatives to further patient safety the nation’s first chief nursing officer (cno) patient safety leadership forum was recently held in san diego, california. nationally recognized experts gathered in indianapolis to emphasize the leadership role nurses must play in making patient safety a pri- ority within the health care system. the forum highlighted a series of institute of medicine reports on patient safety and best practices for how nurses can improve safety within their individual hospitals and through implementa- tion of practices developed by organizations such as the joint commission on american healthcare organizations and the food and drug administration. an executive summary of the cno patient safety leadership forum is posted at www.alarismed.com or www.clarian.org. quality-of-life measures in clinical research and medical care the national institutes of health (nih) roadmap initiative recently awarded a -year grant to david cella, phd, director of the evanston northwestern healthcare center on outcomes research and education (core). the project for which the grant was received— “patient-reported outcome measurement information system (promis)”—has the potential to improve patient care because it will develop standardized outcome measures across a wide range of chronic diseases for use in clinical research as well as in medical prac- tice. the nih roadmap for medical research is a series of far-reaching initiatives designed to transform the nation’s medical research capa- newsview mailto:ahrqpubs@ahrq.gov mailto:bisquith@ahrq.gov http://www.sagecrossroads.net/public/news/show_article.cfm?articleid= http://www.sagecrossroads.net/public/news/show_article.cfm?articleid= http://www.alarismed.com http://www.clarian.org geriatric nursing, volume , number bilities and speed the movement of scientific discoveries from the bench to the bedside. additional information about the program can be found at http://nihroadmap.nih.gov. new master’s program in geriatric nursing dominican university of california has recently been awarded a large grant from the gordon and betty moore foundation to provide startup funds for the new master of science in nursing (msn) program that will train students to become nurse educators with a specialty in geriatric nursing. the geriatric clinical nurse specialist/nurse educator program, scheduled to start in the fall of , will be the only one like it in the san francisco bay area. the pro- gram is aimed at working clinical nurses and offers a flexible meeting schedule of alternative weekends for semesters. for more informa- tion on the program, contact the school at www.dominican.edu. simulation technology and nursing education quality the american association of colleges of nursing (aacn) has recently received new funding to investigate the use of simulation technology to assess the competency of gradu- ating nurses and to enhance education quality. funding provided by the helene fuld health trust will be used to study and validate a simu- lation-based training and assessment tool adapted specifically for nursing by simulis, a leading developer of simulation-based learning systems. aacn and simulis will initiate the pilot program with a variety of institutions offering baccalaureate nursing programs in the second quarter of . the project will begin by testing an already-developed pain manage- ment module. simulis has also recently part- nered with sigma theta tau international, the honor society of nursing, to build evidence- based clinical reasoning systems for nursing education and skills assessment. american retirement corporation joins nadona/ltc nadona/ltc (the national association of directors of nursing administration in long term care) recently announced that american retirement corporation, comprising proper- ties offering independent living, assisted living facilities, and therapy services to residents, has made of its directors of nursing nadona members. “it’s our people that make the differ- ence,” says elizabeth barlow, rn, national director for quality improvement for american retirement corporation. nadona/ltc mem- bership for our directors of nursing gives them the educational resources they need and the ongoing support they deserve to make that essential difference in the lives and care of our residents.” for more information on nadona/ltc’s assisted living programs, con- tact gary warden (gary@nadona.org) or jamey schleue (jamey@nadona.org). congratulations christiane reimann prize awarded: the international council of nurses (icn) recently announced that dr. margretta madden styles, a nurse scholar recognized globally as an international leader in nursing education, regulation, and credentialing, has been awarded the christiane reimann prize for her international achievements and contributions to the nursing profession. the prize is awarded every years and will be pre- sented to dr. madden styles during the opening ceremony of the icn’s rd quadrennial congress slated for taiwan in may . cherokee inspired comfort award: lynda chever, an lpn specializing in geriatric medicine who has devoted her life to the care of elderly catholic priests and nuns residing at the mohun health care center in columbus, ohio, was recently selected as one of the national winners of the cherokee inspired comfort award. nearly , nominations were submit- ted from which the winners were selected. this award, a national health care recognition program, raises awareness of the vital profes- sion of nursing by highlight the best of the best in health care. resources dementia and alzheimer’s resources • the alzheimer’s association, north michigan avenue, suite , chicago, il ; phone: ( ) - ; web site: www.alzheimers.org • alzheimer’s disease education and referral (adear) center, p.o. box , http://nihroadmap.nih.gov mailto:gary@nadona.org mailto:jamey@nadona.org http://www.dominican.edu http://www.alzheimers.org geriatric nursing, volume , number silver spring, md ; phone: ( ) - ; web site: www.alz.org • alzheimer’s caregivers support online, phone: ( ) - ; web site: www. alzonline.net • alzheimer’s foundation of american, th avenue, th floor, new york, ny ; phone: ( ) - ; web site: www.alzfdn.org • the national women’s health informa- tion center: frequently asked questions about dementia. available at: www.nlm. nih.gov/medlineplus/dementia.html guide for the aging driver a new guide and online video for families worried about an aging parent’s ability to drive safely are available at www.thehartford.com/ talkwitholderdrivers or by writing to the hartford, we need to talk, executive blvd., southington, ct . the guide offers practi- cal information on helping elders know when it is time to limit or give up driving altogether. alzheimer’s speaker’s kit available the alzheimer’s disease education and re- ferral center (adear) has developed a speaker’s kit to help volunteers, health educators, and other community speakers disseminate basic informa- tion about alzheimer’s disease, diagnosis, treat- ment, and current and future research directions. the kit contains a powerpoint slideshow and booklet based on the adear center’s booklet— “unraveling the mystery of alzheimer’s disease.” for more information, go to the organization’s web site: www.alzheimers.org/unraveling/ speak_kit.html. internet resource health politics with dr. mike magee is an expertly researched and informative online commentary from dr. magee, a senior fellow in the humanities to the world medical associa- tion and director of the pfizer medical humanities initiative. the program topics change weekly, but an archive of articles is available and offers many items of potential interest to geriatric nurses, such as commen- taries on driving fatalities in the elderly, osteo- porosis, hidden costs of caring for an alzheimer’s patient, and so on. take a look at this free resource at www.healthpolitics.com. patient safety e-newsletter available the agency for healthcare research and quality (ahrq) has launched the ahrq patient safety e-newsletter. this new online resource will ensure that subscribers receive important patient safety news and information as quickly as possible. to subscribe to this free service, send an e-mail to listserv@list. ahrq.gov; in the subject line, type: subscribe. for questions, e-mail salina prasad in ahrq’s public affairs office at sprasad@ahrq.gov. geronurseonline program geriatric nursing resources are at your fin- gertips with the new geronurseonline program made possible through the nurse competence in aging initiative. you can access “try this” tips from the hartford institute at the new web site (www.geronurseonline.org) by clicking on “resources.” new issues of the “try this” series on dementia include “therapeutic activity kits,” “recognition of dementia in hospitalized older adults,” and “wandering in the hospitalized older adult.” - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . http://www.alz.org http://www.alzonline.net http://www.alzonline.net http://www.alzfdn.org http://www.nlm.nih.gov/medlineplus/dementia.html http://www.nlm.nih.gov/medlineplus/dementia.html http://www.healthpolitics.com http://www.thehartford.com/talkwitholderdrivers http://www.thehartford.com/talkwitholderdrivers mailto:listserv@list.ahrq.gov mailto:listserv@list.ahrq.gov mailto:sprasad@ahrq.gov http://www.geronurseonline.org http://www.alzheimers.org/unraveling/speak_kit.html http://www.alzheimers.org/unraveling/speak_kit.html geriatric nursing, volume , number calendar may – alzheimer’s disease: update on research, treat- ment and care, san diego, california. contact: ( ) - or e-mail: jcollier@ucsd.edu. th annual vamc san francisco nursing research conference: improving practice through research, san francisco va medical center, san francisco, california. contact: alicia. levin@med.va.gov, phone: ( ) - ext. ; or mimi.haberfelde@med.va.gov, phone: ( ) - , ext. . – international council of nurses (icn) rd quadrennial conference, nursing on the move: knowledge, innovation and vitality, taipei, taiwan. contact the council’s web site for further information: www.icn.ch/congresss .htm. – th national conference on gerontological nursing, of the canadian gerontological nursing association: “gerontological nursing: the future’s so bright!” halifax, nova scotia. to register online or for additional information, visit the web site: www.cgna.net/home.htm. june - pain management and end-of-life care: a comprehensive approach to patient care, fairmont hotel, san francisco, california. con- ference sponsored by the university of california, san francisco, schools of medicine, nursing and pharmacy. contact: ( ) - or info@ocme. ucsf.edu. you can also visit the ucsf office of continuing medical education’s web site at www.cme.ucsf.edu. - international conference on prevention of dementia, washington, dc. contact: www.alz.org, e-mail to prevention@alz.org, or phone ( ) - . inquiries to the alzheimer’s association, n. michigan avenue, suite , chicago, il . - case management society of america’s annual conference, gaylord palms resort and convention center, kissimmee–st. cloud, florida. contact: www.cmsa.org/conference or phone ( ) - , ext. . - dementia: molecules to management, brisbane, queensland, australia. contact: australian society for geriatric medicine, c/o organisers australia, p.o. box , milton, queensland , australia; phone: (+ ) - - ; e-mail: asgm@orgaus.com.,au or their web site at www.asgm.org.au. - th annual nadona conference, new orleans marriott, louisiana. contact ( ) - or email to: info@nadona.org. july th international nursing research con- gress: renewing nursing through scholarship, hilton waikoloa village, hawaii. contact: www. nursingsociety.org or e-mail to research@stti. iupui.edu. - th annual dementia care conference, hyatt regency chicago hotel, chicago, illinois. contact: alzheimer’s association, n. michigan avenue, suite , chicago, il ; phone: ( ) - ; web site www.alz.org/careconference. november - sigma theta tau international th biennial convention, indianapolis, indiana. contact: www. nursingsociety.org or e-mail indy @stti.iupui.edu. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . mailto:jcollier@ucsd.edu mailto:alicia.levin@med.va.gov mailto:alicia.levin@med.va.gov mailto:mimi.haberfelde@med.va.gov mailto:prevention@alz.org http://www.cmsa.org/conference mailto:asgm@orgaus.com.au http://www.asgm.org.au mailto:info@nadona.org http://www.icn.ch/congresss .htm http://www.cgna.net/home.htm http://www.nursingsociety.org http://www.nursingsociety.org mailto:research@stti.iupui.edu mailto:research@stti.iupui.edu http://www.alz.org/careconference mailto:info@ocme.ucsf.edu mailto:info@ocme.ucsf.edu http://www.cme.ucsf.edu http://www.alz.org http://www.nursingsociety.org http://www.nursingsociety.org mailto:indy @stti.iupui.edu geriatric nursing, volume , number drug consult alzheimer’s disease, the most common form of dementia, is a progressive and fatal neurode- generative disorder that affects about . mil- lion persons in the united states. the disease affects about % of people older than years, and the risk increases with age over years. the fastest-growing segment of the population is over age . indeed, dementia is estimated to affect . million persons by . pro- gressive memory loss and functional decline that characterize dementia pose extensive bur- den on families and health care resources. with no known cure, much research has been direct- ed to treatment. this column presents an update on the newest medications for alz- heimer’s disease (ad). emphases are on preventing onset, halting progression, and promoting improvement in cognition in patients with dementia. prevention research has been focusing on vaccine develop- ment for promoting antibodies against amyloid. to date, pharmacologic treatments that have been tested for the above mentioned emphases include selegiline, piracetam, vitamin e, ginkgo biloba, anti-inflammatory agents, - and hor- mone replacement therapy. according to the cochrane database of systematic reviews, these have not demonstrated efficacy for alzheimer’s disease. , clinical trials are inves- tigating benefits of statins and entirely new medications that may offer neuroprotection. - medications for slowing progression and pro- moting improvement have pharmacologic actions that either inhibit cholinesterase or regulate glutamate; other drugs are used to manage behaviors such as depression, agita- tion, or anxiety. drugs that have demonstrated benefit in reducing signs of ad are compared in table . the first cholinesterase inhibitor, tacrine (cognex®), has been associated with hepato- toxicity and is seldom used. hence, it is not included in the table. antipsychotics, anxiolyt- ics, and antidepressants that may be used to manage symptoms common to dementia are not included in the table. the cholinesterase inhibitors differ in their pharmacokinetic properties. both donepezil and galantamine are metabolized through hepatic cytochrome p enzymes (cyp ) involving the cyp d and cyp a pathways. rivastigmine is metabolized by hydrolysis (not through cyp ), thereby greatly minimizing the drug interactions that exist with the other medications. donepezil has a long half-life, administered once daily. memantine, with pharmacologic actions dif- ferent from cholinesterase inhibitors, undergoes little metabolism, excreted nearly unchanged in the urine; no drug interactions are identified. deciding which drug to select the selection of the best medication for indi- vidual patients requires consideration of the type and severity of dementia, potential for drug interactions, side effects, and comorbidi- ties. all of these drugs are approved for ad at stages described in table . drug interactions are presented in table . because ad is more prevalent than vascular or lewy body dementia, most medications have been tested for efficacy in ad. up to % of dementias are of the alzheimer’s type, and the medications are more effective in ad than in those dementias. vascular dementia affects % to % of people over years and is secondary to vascular injury to the brain; dementia symp- toms are related to size and location of cere- brovascular lesions. interventions usually focus on controlling cardiovascular risks. one study with memantine revealed significant improve- ment in cognitive function and behavioral dementia treatment update marti d. buffum, dnsc, aprn, bc, cs, and john c. buffum, pharmd, bcpp disclosure of potential conflict of interest—m. d. buffum owns shares of pfizer. j. c. buffum owns shares of neuro- biological technologies, inc. geriatric nursing, volume , number symptoms in mild to moderate vascular demen- tia. the multifactorial and heterogeneous nature of vascular dementia poses challenges to conducting drug trials, which is the reason no recommendations are made. mixed dementia refers to a combination of both ad and vascu- lar pathology, and research offers no informa- tion about successful treatment. the following questions address issues that may be informative for nurses working with patients and their families. . should the drugs be stopped and switched? will this improve the effect? whereas some authors report that deteriora- tion occurs if the drugs are stopped, others report that discontinuing for short periods did not result in irreversible worsening. , nonetheless, if there is need to stop, the time should be minimal and the medication restarted as soon as possible to prevent possible deterio- ration. reasons to switch medications might be, for example, cases in which once-daily dosing is easier to accomplish than twice daily dosing or when drug interactions might occur. titration should always be considered when restarting the medication; as with all geriatric dosing, the rule is to “start low and go slow.” . will early initiation result in long- term benefits? clinical trials suggest that starting treatment early will prevent early decline. it is unknown whether decline prevention occurs if medica- tions are taken when the mini-mental state (mmse) score is close to normal, between and . the cholinesterase inhibitors are approved for mild to moderate dementia. however, the cholinesterase inhibitors have only been stud- ied in patients with a mmse score of between and . as of november , the food and drug administration (fda) has accepted forest laboratories’ filing of the supplemental new drug application for expansion of memantine’s indication to include mild alzheimer’s disease. this means the fda will consider approval of memantine for mild ad in the near future. in published abstract, a study of patients with mild to moderate probable ad (mmse – ) were randomly assigned to memantine or place- bo; those receiving memantine demonstrated significant cognitive and global function improvements. furthermore, a review of clinical trials validates safety and effectiveness of memantine across all ad stages of severity. still, it is unknown how early in the disease treatment could be beneficial. . can medications be combined? when patients are stabilized on cholin- esterase inhibitors and suffering from moderate table . drugs that reduce symptoms of dementia , stage of absorption dementia (ad) dose daily affected name (generic/trade) mechanism of action (fda indications) mg/day doses by food donepezil/aricept® cholinesterase inhibitor mild to moderate – no rivastigmine/exelon® cholinesterase inhibitor mild to moderate – yes galantamine/reminyl® cholinesterase inhibitor mild to moderate – yes memantine/namenda® n-methyl-d-aspartate (nmda)-receptor antagonist moderate to severe* – no *data have been submitted to the food and drug administration supporting memantine efficacy also in mild dementia. geriatric nursing, volume , number to severe dementia, adding memantine may show some slowing of decline in cognition, activities of daily living, global outcome, and behavior. combining memantine with a cholinesterase inhibitor in mild ad is a promis- ing focus for research. more than concurrent cholinesterase inhibitor is not advised. , . what are possible side effects? side effects of cholinesterase inhibitors include nausea, vomiting, diarrhea, and anorex- ia with weight loss. these are more frequent at dose escalation than during maintenance, and dose titration should be done slowly, some- times over weeks. dosage change may be needed at any point. administering medications with food may decrease gastrointestinal side effects. adverse events reported with the cholin- esterase inhibitors include insomnia, abnormal dreams, incontinence, muscle cramps, brady- cardia, syncope, and fatigue. caution is advised in using the cholinesterase inhibitors in patients table . drug interactions , name (generic/trade) drug interactions rivastigmine/exelon® increased oral clearance (decreases level of rivastigmine): cigarette smoking donepezil/aricept®; inhibited metabolism of drug (raising drug levels): galantamine/reminyl® cyp d inhibitors (amiodarone, amitriptyline, cimetidine, delavirdine, fluoxetine, paroxetine, propafenone, quinidine, ritonavir) cyp a inhibitors (ketaconazole, quinidine, paroxetine, clarithromycin, erythromycin, fluvoxamine, itraconazole, nefazodone, ritonavir) may cause bradycardia: diltiazem, verapamil, pindolol, digoxin, amiodarone increased risk of central nervous system adverse events: ethanol reduces levels of other drugs (antagonist): anticholinergics synergistic with other drugs: succinylcholine, bethanechol increased risk for gastrointestinal bleeding or ulcer with concomitant use of nsaids increased metabolism (decreasing drug levels): rifampin, rifabutin, barbiturates, phenytoin, cigarette smoking, st. john’s wort memantine/namenda® decreased renal elimination (increasing levels): drugs that alkalinize the urine (carbonic anhydrase inhibitors, sodium bicarbonate) reduces levels of other drugs: hydrochlorothiazide nsaids = nonsteroidal anti-inflammatory drugs. geriatric nursing, volume , number with bradycardia, sick-sinus syndrome, active peptic ulcer disease, severe asthma or chronic obstructive pulmonary disease, urinary ob- struction, or seizure disorders. , side effects and adverse effects of meman- tine include dizziness, headache, confusion, and constipation. , , caution is indicated with memantine in patients with renal impair- ment. , how the drugs are evaluated the goals of therapy are to improve ability or prevent decline in cognition and function in patients with dementia while minimizing side effects. package inserts have reported magni- tudes of improvement based on percentages of patients achieving - to -point improvements on cognitive test (alzheimer’s disease assessment scale–cognitive subscale [adas- cog]); these improvements are equivalent to disease reversal of months to year, respec- tively, depending on sensitivity of the tests used to evaluate cognition, function, and behavior. not everyone shows improvement. research shows no consistent efficacy differences among the anticholinergic medications. , at maintenance doses, patients on trials lasting between and weeks showed significant improvements in cognition when taking any of the cholinesterase inhibitors—donepezil, rivastigmine, and galantamine. applying research findings to practice: considerations research issues need consideration before applying findings to practice. symptoms of dementing conditions are devastating for the individual and the family. all involved persons have an urgent desire to prevent deterioration, and they are desperate to try new medications. nurses play a vital role in instilling hope through accurate education about safe and effective treatments. newest findings in the media throughout december reveal the dangers of anti- inflammatory medications as causing myocar- dial infarctions. the dangers for gastrointesti- nal bleeding and prevention of healing of existing ulcers prompt extreme caution. certainly families need awareness about these dangers before embarking on an unsupervised trial of nonsteroidal anti-inflammatory drugs. patients and their families as well as providers can easily be confused by media reports. for example, they may be confused about the risk-benefit of the cholinesterase inhibitors. of note is that a recent meta-analysis (a powerful statistical technique that incorpo- rates outcomes of different studies and emerges with strong conclusive evidence) of trials concludes that there is a modest but sig- nificant therapeutic effect of the cholinesterase inhibitors versus placebo along with modest but significantly higher rates of adverse events and discontinuation. should this evidence prompt usage? mixed-sample populations, sampling, and funding mechanisms need consideration. the similarity among the cholinesterase inhibitors enables generalization from the use of donepezil to the other drugs in this category. a recent large study (n = persons) with donepezil in the united kingdom, reported slight improvements in function and no delay in institutionalization or prevention of decline over and years; the investigators questioned the value of these medications. one research consideration is that the study was with com- munity residents and included patients with alzheimer’s disease with and without vascular dementia. because treatment for vascular dementia is problematic, poor responses could skew the results. community residents with mild dementia and multiple comorbidities are more likely to be representative of real patients in clinical practice than selected patients for clinical trials of drug studies; cognitive and behavioral improvements may be harder to detect in community-based samples. finally, this study was funded by the british govern- ment, the primary health care provider in great britain. the cost–benefit analysis prompts thought about the economic value of providing medication when improvement and time to institutionalization are no different from place- bo. other studies are often funded by the drug industry, and the commercial motives may bias reporting of effectiveness. this cost-benefit study is more current than the above-mentioned meta-analysis. which should be believed? caution should be taken when interpreting research and attempting to generalize findings to all individuals. bias exists because persons selected to participate in clinical trials are geriatric nursing, volume , number known to differ from unselected populations of ad patients. for example, patients who partici- pate in research tend to be better educated, wealthier, and younger than patients not enrolled in trials; they also tend to be caucasian, receiving care in an academic envi- ronment, and encouraged to stay the study duration. to minimize side effects and create more homogeneous samples, patients with comorbid conditions are often excluded from drug studies; thus, healthier people are studied. additionally, participants may concurrently be taking other remedies for decreasing ad effects. of note is that baseline medication use in a study combining memantine and donepezil, patients were taking tocopherol (vitamin e; %– %), ginkgo biloba ( %– %), and calci- um ( %– %); efficacy of these medications is not known and could influence findings when mixed within studies. in sum, medication regi- mens need to be customized for each individual in the context of their health and environment. references . hebert le, scherr pa, bienias jl, et al. alzheimer dis- ease in the u.s. population: prevalence estimates using the census. arch neurol ; : - . . etminan m, gill s, samii a. effect of non-steroidal anti-inflammatory drugs on risk of alzheimer’s dis- ease: systematic review and meta-analysis of observa- tional studies. bmj ; : - . . martyn c. anti-inflammatory drugs and alzheimer’s disease. evidence implying a protective effect is as yet tentative. bmj ; : - . . gasparini l, ongini e, wenk g. non-steroidal anti- inflammatory drugs (nsaids) in alzheimer’s disease: old and new mechanisms of action. j neurochem ; : - . . evans jg, wilcock g, birks j. evidence-based phar- macotherapy of alzheimer’s disease. int j neuro- psychopharmacol ; : - . . the cochrane database of systematic reviews. the cochrane library web site: http://www.cochrane.org. accessed december , . . cummings jl. alzheimer’s disease. n engl j med ; : - . . drugs and therapies. alzheimer’s association web site: http://www.alzforum.org/dis/tre/drt/default.asp. accessed december , . . drugs in clinical trials. alzheimer’s association web site: http://www.alzforum.org/dis/tre/drc/. accessed december , . . forest laboratories. package insert. namenda® (memantine hydrochloride). . . novartis pharmaceuticals. package insert. exelon® (rivastigmine tartrate). . . areosa sastre a, mcshane r, sherriff f. memantine for dementia. the cochrane database of systematic reviews ; :cd .pub . doi: . / .cd .pub . . orgogozo j, rigaud a, stoffler a, et al. efficacy and safety of memantine in patients with mild to moderate vascular dementia. stroke ; : - . . pantoni l. treatment of vascular dementia: evidence from trials with non-cholinergic drugs. j neurol sci ; : - . . tariot pn, farlow mr, grossberg gt, et al. meman- tine study group. memantine treatment in patients with moderate to severe alzheimer disease already receiving donepezil. a randomized controlled trial. jama ; : - . . ad collaborative group. long-term donepezil treatment in patients with alzheimer’s disease (ad ): randomized double-blind trial. lancet ; : - . . schneider ls. commentary. ad : donepezil in alzheimer’s disease. lancet ; : - . . forest laboratories. fda accepts supplemental new drug application filing to expand namenda’s® indica- tion to include treatment of mild alzheimer’s disease. press release, november , . http://www.frx.com. accessed january , . . pomara n, peskind er, potkin sg, et al. memantine monotherapy is effective and safe for the treatment of mild to moderate alzheimer’s disease: a random- ized controlled trial [abstract - - ]. presented at the th international conference on alzheimer’s disease and related disorders, philadelphia, july . . tariot pn, doody r, peskind e, et al. memantine treatment for mild to severe alzheimer’s disease: clinical trials summary [abstract p - ]. poster pre- sented at the th international conference on alz- heimer’s disease and related disorders, philadelphia, july . . semla tp, beizer jl, higbee md. geriatric dosage handbook. th ed. hudson, oh: lexi-comp; . . cummings jl. use of cholinesterase inhibitors in clin- ical practice. evidence-based recommendations. am j geriatr psychiatry ; : - . . lanctôt kl, herrmann n, yau kk, et al. efficacy and safety of cholinesterase inhibitors in alzheimer’s dis- ease: a meta-analysis. cmaj ; : - . marti buffum, dnsc, aprn, bc, cs, is associate chief, nursing service for research, veterans affairs medical center, san francisco, and associ- ate clinical professor, university of california school of nursing, san francisco; john c. buf- fum, pharmd, bcpp, is associate clinical profes- sor, university of california school of pharmacy, san francisco, california. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . http://www.cochrane.org http://www.alzforum.org/dis/tre/drt/default.asp http://www.alzforum.org/dis/tre/drc/ http://www.frx.com nutrition and well-being relationship of dementia and body weight peggy k. yen, rd, ld, mph peggy k. yen the number of people with dementia will increase by an estimated % between and . obesity and weight loss are related to dementia in what seem to be contradictory ways. weight monitoring has always been essential to the care of older adults, but it may become an important tool for dementia preven- tion and treatment in the future. obesity women obese at age showed an increased risk of developing alzheimer’s disease in their s, according to a swedish study. there was no significant relationship between weight and cognitive function among the men studied. other research assessed the calorie and fat intake of older adults with and without the apo e allele. apolipoprotein e is a protein involved in transporting cholesterol in the blood. people with the apo e allele are more likely to devel- op alzheimer’s disease. the combination of genetic predisposition and higher intake of fat and calories doubled the risk of developing symptoms of dementia. this study did not report the weight status of the participants whose weight may have varied according to their fat and calorie intake. weight loss other studies show a relationship between weight loss and dementia. in free-living older men and women followed for a period of years, the group that eventually developed alzheimer’s disease showed a significant decrease in weight over time. there was no sig- nificant weight loss in the men and women whose cognition was unimpaired. researchers concluded that the weight loss was not a con- sequence of the dementia but an indicator of mild to moderate dementia. men in the honolulu-asia aging study lost weight in the years before developing demen- tia, more weight than those who did not devel- op this condition. the weight loss seemed to coincide with a period of mild cognitive impair- ment preceding their dementia diagnosis. these men were followed for years and received several careful assessments of mental status. most of the men were in the normal weight range at the beginning of the study. dementia and the wandering associated with it are often considered to be a cause of weight loss in older adults with alzheimer’s disease, not the result. with further research on the tim- ing of weight loss in relation to diagnosis, health care professionals may be able to antici- pate dementia diagnosis and intervene. weight loss in older adults already diagnosed with alzheimer’s disease is an indicator of a negative prognosis and greater mortality. the physician’s guide to nutrition in chronic disease management for older adults from the nutrition screening initiative describes weight loss as an early symptom of dementia. mechanism for the weight loss effect on dementia weight loss may contribute to cognitive impairment. atrophy in certain lobes of the brain correlates with lower body weight. high levels of the hormone cortisol resulting from weight loss may be one reason. the complicat- ed relationship between hormones such as cor- tisol and leptin, an appetite-suppressing hor- mone, and free radicals that result from metabolism of food may also explain some of the effects of weight loss on brain function. excess production of free radicals may also partially explain the relationship between dementia and high fat and calorie intakes. importance of monitoring weight the minimum data set describes as signifi- cant weight loss of % or more in days or % in days. weight loss can predict mortality in elderly people. nursing home staff should mon- geriatric nursing, volume , number geriatric nursing, volume , number itor weight changes of elderly residents, even though interpretation of weight changes can be complicated. measuring weight regularly using a systematic method such as a bed, bath, or standing scale promotes accuracy. policies and procedures developed to help nursing home staff with weight status monitoring are avail- able at the following web site: http://www.fiu. edu/% enutreldr/ltc_institute/materials/ltc_ products .htm. additional materials at this site include instruc- tions for accurate weighing, evaluating weight change, and a weight record sample form. regular weight monitoring combined with mental status assessments can help nursing home staff identify elders at risk for dementia. drug therapies that slow the progress of dementia can then be instituted and families, and caregivers can adapt living arrangements to prepare for its effects. nursing home staff con- sistently overestimate the nutritional intake of residents. weight is a more reliable indicator of calorie intake. intentional weight loss many elders are at risk for or have chronic diseases that are made worse by overweight and obesity. carefully monitored, gradual weight loss to control blood sugar or blood pressure is not likely to increase the risk for dementia. in fact, type diabetes and cardio- vascular disease increase the risk of developing the vascular type of dementia. physical activity higher levels of physical activities such as walking are associated with better maintenance of cognitive function and less cognitive decline in women in the nurses health study. men in the honolulu-asia aging study who walked more had a reduced risk of developing demen- tia. none of these studies related physical activ- ity to weight, but it is likely that the weight loss of early dementia is not related to intentional increases in physical activity. references . barrett-conner e, edelstein sl, corey-bloom j, wiederholt wc. weight loss precedes dementia in community-dwelling older adults. j am geriatr soc ; : - . . stewart r, masaki k, qian-li xue, et al. a - year prospective study of change in body weight and incident dementia. arch neurol ; : - . peggy k. yen, rd, ld, mph, is a public health nutri- tion consultant in baltimore, maryland. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . http://www.fiu.edu/% enutreldr/ltc_institute/materials/ltc_products .htm http://www.fiu.edu/% enutreldr/ltc_institute/materials/ltc_products .htm http://www.fiu.edu/% enutreldr/ltc_institute/materials/ltc_products .htm home health care tina m. marrelli, msn, ma, rn home health care editor author’s note: the following patient sce- nario highlights the multiple and complex problems that caregivers and families face as they seek to provide the best, safest care for patients and to identify the best setting for that care. the patient scenario is followed by a listing of resources available to assist nurses and family caregivers in this quest. mr. davis is a -year-old man living in his own home in a suburban neighborhood. he has been a widower for approximately years, and a home care agency was contacted to provide an assessment because the family is increasing- ly uneasy with his continuing to live alone. the family reports that he still dresses himself and drives but that he is increasingly forgetful and that “they are worried.” when asked for an example about his forgetfulness, the daughter stated, “we turned off the stove so it could not be used, but he is unaware of that and fre- quently calls the appliance store to turn it back on. now we are worried that he is going to buy a new stove.” the daughter goes on to explain mr. davis has adult children, all within a - mile area, and they take turns coming over in the mornings and cooking breakfast and then leave him food for lunch and dinner. the daugh- ter also notes that mr. davis has lost weight over the past few months. she emphasizes that he will not leave his home, and when they have broached the subject of moving out of the home, perhaps to an assisted living center, he angrily orders them out of the house. in addi- tion, they express concern over his driving and shopping habits; he has spent thousands of dol- lars in the last months on new tvs and other electronic equipment. she explains that although he has the money, they are worried about his driving and believe he may be experi- encing some personality changes. he was recently involved in a fender-bender when he backed into another car and then physically threatened the other driver, a young man. fortunately, the young driver called the police on his cell and sat in the car until they arrived. the daughter was later contacted and told that her father should no longer be driving. a court date has been set for the accident, and the daughter is aware that she has to make some changes. until that time, she wants the home care program to provide an aide as much as pos- sible. the problem is that as soon as the agency identifies an aide for the assignment and takes the aide out to meet mr. davis, he “fires” the per- son and will not let him or her back into his home. finally, he fell the week before (reported- ly while trying to get under the stove to identify why it would not turn on) and now has a cast on his right foot. the nurse case manager refers the family to their doctor, who recommends a geria- trician as a starting point for a safety plan. the daughter and her siblings are now considering whether mr. davis should live with them or if they can alternate caring for him in his own home. months later, the daughter calls the agency to say that their father has been evaluat- ed and diagnosed with dementia and she was told that it might be alzheimer’s disease (ad). patients like mr. davis have a plethora of problems that all affect safety—his own and that of others. unfortunately, these patients are increasing as the population ages. in fact, the estimates of how many people with ad drive are staggering and frightening. ad is the most common cause of dementia among people aged and older. regardless of the diagnosis patients with these problems need assistance primarily related to safety and personal care. the following are resources to help ensure that the elderly with dementia or ad are prop- erly cared for in the home for as long as safely possible. alzheimer’s disease centers: the national institute on aging (nia) funds alzheimer’s disease centers (adcs) across the country and many of them also have satellite offices in geriatric nursing, volume , number dementia: complex care needing ongoing assessment geriatric nursing, volume , number underserved and rural communities. many of the centers are located at large university hos- pitals, including stanford, duke, case western reserve, mayo clinic, and johns hopkins. for patients and families, they provide diagnoses and management, information about the dis- ease, resources and services, volunteer oppor- tunities related to drug trials, support groups, and other programs. for the current listing of adcs, visit www.alzheimers.org. alzheimer’s association: this national association provides education and information about the disease. it can be reached through its web site: www.alz.org. alzheimer’s disease education and referral (adear) center: the adear cen- ter is a part of the national institutes on aging (nia) and provides publications and informa- tion about ad, including booklets on caregiving and other resources. there are also phone lines staffed by information specialists to provide referral and other information. nia can be con- tacted by calling ( ) - or by visiting its web site: www.alzheimers.org. national institute on aging: the nia offers a -page book titled alzheimer’s disease: unraveling the mystery. this book introduces the concept of alzheimer’s and has a practical definition: dementia is the loss of memory, reason, judgment, and language to such as extent that it interferes with a person’s daily life and activities. it is not a disease itself, but a group of symptoms that often accompa- nies a disease or condition.” the book is in color and explains the brain, factors related to ad, and support for families and other care- givers. the book also offers a glossary of brain and other terms as well as a cd with a brief ani- mation explaining alzheimer’s and text and pdf files of the book. the book can be ordered by calling adear ( ) - . caregiver guide: tips for caregivers of people with alzheimer’s disease. the nia offers this -page guide free to caregivers and others. topics addressed include communica- tion, bathing, dressing, eating, activities, exer- cise, incontinence, sleep problems, hallucina- tions and delusions, wandering, home safety, driving, visiting the doctor, choosing a nursing home, and more. call the alzheimer’s disease education and referral at ( ) - to order. eldercare locator: the eldercare locator is a national directory assistance program that helps patients and caregivers locate local serv- ices. it is funded by the u.s. administration on aging (www.aoa.gov). to contact eldercare locator for services, call ( ) - . hartford foundation institute for geriatric nursing: the institute offers many helpful and practical resources. “try this” is a publication of the hartford institute and is a series of assessment tools that focus on issues specific to older adults. all of the tools are con- sidered best practices and include, for example, “katz index of independence in adls,” “the mini-mental state examination,” “fall risk assessment,” “confusion assessment method,” “caregiver strain index,” and “assessing pain in persons with dementia,” among others. these can be viewed on the institute’s web site: www.hartfordign.org. the -hour day: a family guide to caring for persons with alzheimer disease, related dementing illnesses, and memory loss in later life by nancy mace is a book that all caregivers and family members should read. it provides insight into the patient with ad and the care needed. amazon.com or local bookstores offer this text. tina m. marrelli, msn, ma, rn, is the home health care section editor for geriatric nursing. - /$ - see front matter © elsevier inc. all rights reserved.. doi: . /j.gerinurse. . . http://www.alzheimers.org http://www.alz.org http://www.aoa.gov http://www.alzheimers.org http://www.hartfordign.org http://amazon.com book reviews marianne laporte matzo, phd, aprn, bc, gnp, faan book review editor making the moments count: leisure activi- ties for caregivi joanne ardolf d , johns ho pages, paperbac alzheimer’s: the helen d. davies , elder boo paperback, $ . candle and dark alzheimer’s dise joseph rogers , bonus b $ . . caregiver’s repr survival when y you love avrene l. bran , impact, be prepared: the and practical gu challenging con david s. landa , st. mart $ . . gerontological patients but frequ of these patients heath care needs patients are depen nonprofessional c mated million u givers in the unite es must have kn caregiver to prov person with chro viding the caregiv survive the work roles for the geria geriatric nurse to reading books abo this month’s re caregivers and cov caregiving as well for the caregivers disease. geriatric nurses need to be familiar geriatric nursing, volume , number ng relationships ecker pkins university press, k, $ . . answers you need , michael p. jensen ks, forest knolls, pages, . ness: current research in ase ooks, pages, paperback, ieve: a guide to emotional ou’re caring for someone dt pages, paperback, $ . . complete financial, legal, ide for living with a life- dition y in’s, pages, hardcover, nurses work not only with ently also with the caregivers . the mental and physical of many of these geriatric dent on the care provided by aregivers. there are an esti- npaid nonprofessional care- d states. gerontological nurs- owledge of the role of the ide better care for the older nic disease or illness. pro- er with support and ways to of caregiving are important tric nurse. one way for the learn about caregiving is by ut caregiving. viewed books are written for er a variety of key aspects of as providing specific support of persons with alzheimer’s with these types of books and the information contained in them; they may want to recom- mend some of these books to caregivers or use them as teaching guides when working with caregivers of all kinds—family, friends, and vol- unteers. geriatric nurses may also want to rec- ommend these books to local public or medical libraries. a certified therapeutic recreation specialist wrote making the moments count: leisure activities for caregiving relationships. leisure is frequently thought of as something you do if you have completed all your tasks and then have some left-over time. joanne ardolf decker debunks this theory of leisure. she describes to the reader how to bring leisure into all activities using small true-to-life scenarios. she provides strategies that can bring the care- giver and patient closer together. an extensive checklist of leisure favorites when completed will provide the caregiver with ideas of what leisure activities are enjoyed and can still be done by the patient. activities for ambulatory, limited mobility, and bed-bound patients are described. chapters are divided into areas of activity called the p.i.e.s.s. system: physical activity: using simple natural body movements with daily activities, rather than a strenuous exercise program. examples: have the bed-bound patient squeeze stuffed animals; have the ambulatory patient help set the table. intellectual activity: keeping the mind active through recall, reminiscence, decision making, following directions, and stimulation of senses. example: use maps to reminisce about previous vacations and trips. emotional and expressive activity: expres- sion of moods through humor, self-esteem build- ing, creativity and self-expression. example: caring for a pet, collecting comics, keeping a journal, engaging in hobbies. social activity: connections with other people and with plants, pets, and the community. example: celebrate holidays, plan trips, and maintain association with clubs. spiritual activity: being in touch with one’s higher power, life and death, motivation, and geriatric nursing, volume , number inspiration. example: attend church, watch or listen to religious tv shows or radio programs, prayer. this author does not forget the leisure needs of the caregiver and stresses the importance of caregivers taking time for leisure activities of their own to stay refreshed to continue to pro- vide care. eighty-eight fun, free things to do are provided for the caregiver. some of these activ- ities include learning to play the harmonica, making cookies, telling jokes, praying, and throwing away clutter. a list of resources for special needs is found at the back of the book. this is an easy book to read. it is full of won- derful ideas and can be useful for the geriatric nurse and caregiver. keep this book handy and share its information with caregivers. alzheimer’s: the answers you need is writ- ten by a caregiver of an alzheimer’s patient and by the co-director of the stanford/veterans administration alzheimer’s center. this is a short and quick-read book. it is written in ques- tion-and-answer format with each question list- ed at the top of a page. it is directed at the per- son with early-stage alzheimer’s and their caregivers. there are questions about sex, driv- ing, stigma, durable power of attorney, finances, work, changes within the family and marriage, treatments, vitamins, and other issues. this book can be read from cover to cover or just skimmed, reading only selected parts. helen d. davies and michael p. jensen provide caregivers with a quick and easy-to- read book on a difficult topic. geriatric nurses may find this book useful and share it with patients with early-stage alzheimer’s and their caregivers. candle and darkness: current research in alzheimer’s disease is written by a scientist devoted to studies of aging and alzheimer’s dis- ease. it is a short and quick-read book. joseph rogers describes what alzheimer’s is, what treatments are available, and what research is being done. it gives hope that research will find a cure for this disease one day. he discusses who is at risk for alzheimer’s and what happens to the person and the brain of someone with this disease. technical chapters on apolipopro- tein e, amyloid b peptide, and neurofibrillary tangles may be of interest to some caregivers but may be too advanced for others. in the back of the book, the reader is provided with a list of additional reading material, both technical and nontechnical in nature. the author also lists the names and places of locations of current alzheimer’s research. this book helps make a difficult disease understandable for geriatric nurses and caregivers of alzheimer’s disease. caregiver’s reprieve: a guide to emotional survival when you’re caring for someone you love is written by a clinical psychologist. in addition, this short, quick-read book provides information about the stressors and emotional aspects of caregiving. avrene l. brandt uses stories to demonstrate the role of the caregiver. caregivers reading this may identify with some of the stories. caregivers are told that their feel- ings are normal. she describes the psychologi- cal defenses that caregivers use to survive: denial, isolation, rationalization, and displace- ment. this book looks at caregivers who are family members—parents, spouses, and chil- dren—and looks at how family relationships are changed when one takes on the role of caregiver. examples of emotional aspects of caregiving: fear, denial, anxiety, frustration, resentment, anger, guilt, isolation, depression, and grief are identified. developing coping tools such as physical exercise, relaxation tech- niques, time away, humor, and support systems are addressed. a list of personal and social sup- port resources is provided for the caregiver. caregivers are given guidelines for coping with emotions in a simple format. gerontological nurses should read this book because it gives insight into the life of a caregiver; caregivers of all types can benefit from reading this book. be prepared: the complete financial, legal, and practical guide for living with a life- challenging condition is written by a practic- ing attorney who heads an information resource firm dedicated to advising people with life-challenging conditions. this is a large book and not necessarily meant to be read from cover to cover. david s. landay has given care- givers an excellent reference book. it contains chapters in parts dealing with what the title indicates. the detailed table of contents and index make it easy for the reader to find a sub- ject of interest. there are introductions to all chapters and simple, practical tips are provided in each chapter. part consists of on chapter, an overview of the entire book, and the reader is encouraged to geriatric nursing, volume , number read this chapter to better understand the vol- ume’s contents. part reviews the building blocks for successful living. attitudes, coping, relaxation, employment benefits, social securi- ty, credit status, health, financial information, employment, and net worth are some of the topics discussed. part reviews topics about income, including disability, hiring, rehiring, confidentiality, advancement, leave of absence, health insurance protection, making your job work better for you, the ideal job, job inter- views, disability income, worker’s compensa- tion, unemployment insurance, retirement plan- ning, and investments. part contains information about protection against increased expenses. included are dis- cussions on health insurance, medicare, medicaid, government programs, property and casualty insurance, financial management and taxes. part details new uses of assets. subject matter includes life insurance as a liquid asset, conversion of retirement assets to income, and rethinking credit, real property, and other assets. part deals with health matters such as finding a doctor, drugs and treatments, nutri- tion and exercise, home, assisted living, nursing homes, hospitals, hospice, and bodily changes. part describes estate planning, advanced directives, health care power of attorney, wills, taxes, and funeral arrangements. part talks about the importance of support groups, describes who is on a support team, and addresses travel and a few other topics such as student loans, pets, and disabled parking. this book is an excellent resource for anyone who is or may become a caregiver for a person with a chronic disease or illness. it should be required reading for all gerontological nurses. carol hricz townsend, msn, gnp, cs, is a geri- atric nurse practitioner at the geriatric primary care clinic, gainesville va, gainesville, florida. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . geriatric nursing, volume , number geriatric nursing official section of the national gerontological nursing association ngna news robin e. remsburg, phd, aprn, bc, fngna, and neva l. crogan, phd, aprn, bc, fngna, section editors ngna: what’s it all about? the mission of the national gerontological nursing association (ngna) is to promote gerontological nursing in order to influence the clinical care of older adults. the goals of ngna are to: . provide a forum in which gerontological nursing issues are identified and explored . promote the specialty of gerontological nursing . conduct educational programs . promote research in gerontological nursing . support the professional development of nurses whose practice includes older adults . engage in programs designed to demon- strate innovative techniques and approaches in gerontological health care to better meet the needs of america’s aging population . advocate for legislation which enhances the care of older adults and the role of gerontological nursing in the care of older adults . provide grants to conduct activities which further the goals and purposes of ngna . disseminate information related to geron- tological nursing then ngna board of directors, in conjunc- tion with its committees, task forces, appointed representatives, and ngna fellows, are dedi- cated to carrying out the mission and goals of the association. members are encouraged to participate through committee and task-force activities, running for a position of leadership at the local chapter or national level, and recruit- ing new members to ngna. some highlights of ngna activities include the following: • chartering new ngna chapters • initiating plans for redesign of the web site • collaborating with the canadian geronto- logical nursing association to write a joint position statement • reviewing and revising important organiza- tional documents such as the policy and procedure manual, strategic plan, and awards and scholarship applications • the clinical practice committee published innovations in clinical practice (icp) papers and identified topics for icps in • the convention planning committee plan- ned an exciting and lively convention in las vegas • the research committee reviewed poster abstracts for the convention and selected the judith v. braun research and innova- tions in practice award recipients • the education committee completed a member needs assessment process and planned the certification preparation review course that was presented at the convention • the nominating committee recruited mem- bers for the elections; the member- ship elected a new treasurer, directors-at- large, a president-elect, and nominating committee members • the board initiated many e-mail communi- cations to notify members of important and late-breaking information • ngna collaborated with the cancer care network • members represented ngna at numerous national meetings including the nursing organizations alliance, nurse competence in aging program, senior clinicians task force, centers for medicare and medicaid services (cms) staffing and quality partners projects a few words about the convention kudos to the ngna planning committee for the work that contributed to the very successful convention, gerontological nursing: aging is a work of art, at the stardust hotel in las vegas, nevada. examples of comments from convention participants include the following: geriatric nursing, volume , number “i learned a lot, but most importantly there was great networking. i always knew special people took care of our seniors.” “so inspiring! excellent topics/speakers, valuable to my practice.” “this was one of the best conferences that i have attended. it was so very well organized. staff was extremely helpful and pleasant— very professional. the food was superb! thank you! presenters were outstanding! informa- tion was current and accurate. i am so proud to be a gerontological nurse!” “the speakers were all dynamic and inter- esting. the planning committee did a fantas- tic job.” “the convention was outstanding in every aspect! great quality of presentations, quality of the hotel, and quality of the food.” “poster presentations were some of the best i have ever seen! excellent!” “excellent conference. my first one!” “i’m looking forward to next year in myrtle beach.” “gala outstanding!” th anniversary convention in the planning committee is hard at work preparing for the th anniversary ngna convention, october – , , in myrtle beach, south carolina. the theme is geronto- logical nursing: looking toward the horizon! mark your calendars and make plans to join your peers in the anniversary celebra- tion of ngna’s dedication to the clinical care of older adults across diverse care settings. for more information, visit the ngna web site at www.ngna.org. call for poster abstracts the call for posters for the ngna annual convention, october – , , myrtle beach, south carolina, is available on the ngna web site (www.ngna.org) or by con- tacting the ngna national office at ( ) - . abstracts selected for presentation at the annual meeting will be featured in the january/february issue of gn. opportunities for leadership— a call for nominations the ngna nominating committee is seeking candidates for the office of vice president, sec- retary, directors-at-large, and nominating com- mittee members ( ). the national office must receive nominations no later than april , , for consideration by the nominating com- mittee. all current members of ngna are eligi- ble to be nominated. self-nominations are also encouraged. nomination does not guarantee that a person’s name will appear on the final slate. complete instructions and nominations can be obtained from the national office at ( ) - or by visiting the ngna web page at www.ngna.org. ngna recognition and scholarship opportunities—a call for nominations excellence in gerontological nursing awards the excellence in gerontological nursing awards were established to recognize excel- lence in individuals who provide direct care to older adults. four awards honor a recipient in each of the following categories: registered nurse, advanced practice nurse, licensed practi- cal nurse, and a certified nursing assistant; the honorees will have consistently provided out- standing care to older adults and been inspira- tional role models and mentors to other health care workers. mary opal wolanin scholarship program ngna currently offers scholarships in memory of mary opal wolanin. the board of directors recently removed the requirement that applicants must be members of ngna; a - year membership in ngna will now be given along with the award. graduate—a nursing student with a major in gerontology or geriatric nursing enrolled in a nationally accredited nursing program and car- rying a minimum of credits. applicants must submit proof of u.s. citizenship. a $ , schol- arship will be awarded at the annual conven- tion. undergraduate—eligible applicants include full-time or part-time nursing students in a http://www.ngna.org http://www.ngna.org http://www.ngna.org geriatric nursing, volume , number nationally accredited u.s. school of nursing. applicants must have an intent to work in a gerontology or geriatric setting after gradua- tion. a $ , scholarship will be awarded at the annual convention. distinguished service award the distinguished service award, established in by the ngna board of directors, is pre- sented to a ngna member in recognition of outstanding leadership, participation, and con- tributions toward achieving ngna goals. cindy shemansky travel scholarship the national gerontological nursing associ- ation travel scholarship was established to pro- vide assistance to ngna members who wish to attend the annual convention but who need financial assistance with travel expenses. each scholarship is a $ , cash award that can be used for registration fees, lodging, and other travel costs. individuals who have been mem- bers of ngna for at least year are eligible for the scholarship. members of the board of directors are not eligible for the scholarship. ngna photo contest each year ngna holds a photo contest to identify pictures that promote and highlight positive aspects the older adult population. the ngna photo contest is open to ngna mem- bers and ngna chapters. the contest winner receives a complimentary registration to ngna’s convention. - board of directors the members of the board of directors for - are as follows: president: cindy shemansky, med, rn,c, lnha, fngna vice president: neva l. crogan, phd, aprn, bc, fngna president elect: robin e. remsburg, phd, aprn, bc, fngna secretary: victoria schirm, phd, rn, cs treasurer: amy cotton, ms,cs,fnp director: barbara mccabe, phd, aprn, bc, fngna director: anita siccardi, edd, aprn, bc director: janellyn hannah, bsn, rn,bc, phn, cde director: martha sparks, phd, rn, gcns the ngna board of directors would like to extend thanks to outgoing board members shirley travis and kay cresci for their hard work and dedication to the organization. kay and shirley were presented plaques in recognition of their service at the ngna convention. news from the chapters three new chapters were chartered in : the southwest texas chapter, atlanta area chapter, and north carolina piedmont regional chapter. the ngna chapter committee is available to assist ngna members start a chap- ter. if you are interested in starting an ngna chapter, contact barbara broxson at the national office, ( ) - . call for ngna section manuscripts calling all ngna members! we are seeking manuscripts for the ngna section of geriatric nursing. we would like to showcase ngna members’ research studies, clinical projects, and innovative clinical practices. in particular, we are interested in evidenced-based care, translating research into practice, use of new technologies or new applications for established technologies, end-of-life care, effective ways to reduce nursing errors, cost-effective care, inno- vative staffing strategies, and new care models. manuscripts that address health care issues for older adults in any setting where gerontological nurses practice (e.g., long-term, acute, ambula- tory, and home care) are highly desired. manuscripts may focus on administration, edu- cation, research, clinical practice, community service, or health policy implications. the ngna section provides members an opportunity to share their expertise and experi- ence with fellow gerontology nurses. query let- ters are welcome (but not necessary). for in- structions on manuscript preparation see “author guidelines” at www.mosby.com/gerinurs. send all correspondence and manuscripts to the national office: ngna, grow drive, pensacola, fl ; fax: ( ) - ; e-mail: ngna@puetzamc.com. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . http://www.mosby.com/gerinurs mailto:ngna@puetzamc.com geriatric nursing, volume , number although many long-term care providers regard medication utilization reviews in terms of regulatory mandates, survey defi- ciencies, practice intrusion, and policy viola- tions, not all consider these activities in such negative terms. this article describes the approach used by a large interdiscipli- nary team at a private continuing-care retirement community (ccrc) in north carolina that includes medication regimen review in the larger context of resident care planning. (geriatr nurs ; : - ) o ne recent national study reported that nursing home residents received an average of . routine prescription med- ications and . prn (as needed) medications per day in . because the rate of medication error increases with the number of medications given, and elders in long-term care are among the highest users of potentially lethal drug com- binations, few people question the importance of drug utilization reviews in these settings. - for those long-term care facilities that receive medicare and medicaid reimbursement, the centers for medicaid and medicare services (cms) exert a powerful influence on drug uti- lization patterns through a vast array of policy mandates and state surveyor procedures. even with this mandated oversight by many individu- als at many levels of review, polypharmacy, medication error, and adverse drug reactions with resulting hospitalization and death are long-standing and persistent medication-related problems for vulnerable older adults who reside in long-term care facilities. , - our purpose is to describe the care planning practices at a private-pay continuing-care retire- ment community (ccrc) in the southeastern united states where drug utilization reviews are a routine part of interdisciplinary team meetings for residents in both assisted living and nursing home care. the mission statement of this organ- ization specifically addresses the need to attend to the physical, emotional, intellectual, social, and spiritual needs of the residents. this mis- sion translates into primary themes for med- ication administration practices: ) drug utiliza- tion review is just “good practice,” ) measuring therapeutic outcomes in long-term care requires a holistic mind-set that considers all aspects of a resident’s care and his or her response to treat- ment, and ) concerns about intrusion or med- dling in someone else’s professional practice domain are counterproductive to cohesive team management of the residents’ needs. we also discuss common barriers to creating interdis- ciplinary teams and conclude with suggestions for improving the practice of medication utiliza- tion review in environments where cohesive interdisciplinary teams do not exist. interdisciplinary teaming and effective medication regimen reviews in this large ccrc, the monthly team meet- ings are regularly attended by the medical director, nursing administrator, nursing team leaders, dietitian, social services coordinator, activities coordinator, and the consulting phar- macist. this interdisciplinary team cares for residents on nursing home units, a memory impaired unit, and an assisted living unit. just good practice mandates, regulations, and the threat of defi- ciencies may lead a team to address medication incorporating medication regimen reviews into the interdisciplinary care planning process judy binch, rn, ron beamon, md, stephanie clontz, bsw, patti goodwin, rn, bsn, heather hartwig, ctrs, ratna kolhatkar, rd, mike list, rph, pharm d, and shirley s. travis, phd, aprn, faan geriatric nursing, volume , number utilization issues, but they will not necessarily make the team focus on what constitutes good practice and good resident care. there are many ways to organize a discussion about a res- ident’s care that enable teams to focus on what is working and what is not. in our team meet- ings, the medical director serves as chair. before the meeting, the director of health serv- ices (a nurse), the nurse manager, or the head nurse of the nursing home unit provides the chairperson with a verbal summary of the rele- vant issues for each resident on the list for dis- cussion. residents may also be added at the last minute when new problems emerge over night. all residents’ charts are transported to the con- ference room the morning of the meeting and are readily available if needed. the presentation of a resident to the team by the medical director usually begins with a state- ment of the problem, need, or concern that has been identified from regular resident assess- ments, family members, or the resident. the staff member who is closest to the issue (nurse, social worker, dietician, etc.) follows the intro- duction with details for the team discussion. others on the team are then invited to add information, ask questions, or propose solu- tions and changes to the plan of care. medication-related issues regularly include discussions about benefits and potential adverse effects of adding or eliminating a med- ication from the resident’s current medication profile, the resident’s response to previous tri- als of a medication under consideration, any known idiosyncratic responses to medications, past adverse drug events, and cost comparisons of medications. a secondary gain of these dis- cussions is ongoing educational opportunities for the team to learn about geropharmacology, pharmacokinetics, and pharmacodynamics. a standing rule is that no questions are off limits. although much of the information offered for discussion about medication regimens comes from the medical director and consulting phar- macist, the other members of the team are also important resources. the dietician, for example, is a trusted and valued source of information about potential drug-food interactions, weight loss and weight gain issues, and general nutrition considerations and pharmacotherapy. the nurs- ing members of the team regularly provide expert insight into the trials and tribulations of administering medications to frail older adult populations and the needs of individual resi- dents. for example, swallowing multiple pills and capsules is a common problem in long-term care settings. problem solving includes discus- sions about mixing medications with different foods and food textures, alternative routes of administration, dosing and administration schedules, and changing a medication to one that is more palatable to the resident. ultimately, the team arrives at the medication regimen that is most suited to the needs of the individual res- ident to achieve the desired outcomes. these sessions tend to be lively, dynamic, and high- energy exercises in problem solving and clinical decision making with input from the entire team. outcomes in the context of holistic care providing care for frail residents in long-term care settings is extraordinarily complex. by the time an individual reaches his or her eighth decade, alterations in physiologic functioning, mentation, affect, and social relationships cre- ate challenges for even the most astute clini- cian. treating a single symptom without con- sidering the effects on the whole person simply does not work. considering the whole person is a -fold process. first, there are the clinical signs and symptoms of well-being that staff members mon- itor when medication changes occur. routinely, time is given in team meetings to review any changes in a resident’s sleep patterns, food intake, activity level, mobility, behavior, and affect that might be related to the medication regimen. input from the nursing staff on all shifts is essential for this discussion. second, knowledge of the resident’s lifelong behaviors and preferences—determined from input of fam- ily members and significant others—provides an understanding of traits, behaviors, and prefer- ences that could affect a resident’s responses to medications. consultations with family mem- bers by members of the nursing and social work staff are a regular part of preparing for a team meeting. when changes in medications need to be made, the principle “start low, go slow” is rou- tinely followed. consequently, it may take or more team meetings before a satisfactory out- come in the resident’s condition is achieved. geriatric nursing, volume , number turf issues and effective interdisciplinary teams as others have noted, medication utilization reviews work best when integrated into the activities of a facility’s interdisciplinary team. interdisciplinary teams, by definition, are expected to have highly visible lines of commu- nication among team members to facilitate team assignments, share information, and eval- uate the team’s progress toward achieving patient care goals. one of the most striking characteristics of these teams is the purposeful blurring of disciplinary boundaries so that the team members can focus on total resident care rather than separating the resident’s needs into disciplinary compartments. - barriers to interdisciplinary teaming in long-term care in our collective experiences, there are major problems listed (table ) that staff mem- bers in long-term care facilities can face when they attempt to implement successful interdis- ciplinary teams: overcoming familiar and static routines, dealing with scheduling difficulties and time constraints, and the lack of good team models or prior interdisciplinary experiences. overcoming routines regulatory oversight in long-term care set- tings is often noted to create a burdensome sys- tem of reports for the documentation of patient care. if the primary foci of the team’s efforts are on charting procedures and getting the paper- work done, team cohesion and the importance of improving patient care can be affected. staff members have to believe that the results of working as a team are worth the effort it takes to change from solitary or discipline-specific care planning to interdisciplinary teamwork. time constraints historically, teams often have little time to schedule meetings when the entire team can meet to discuss residents’ needs and progress toward therapeutic goals. consequently, many nurses may have experienced fragmented dis- cussions, incomplete information about the res- ident, and unsatisfying action plans. unless a strong organizational commitment to interdisci- plinary teaming exists and an effective team leader emerges to keep the work on track, most efforts at interdisciplinary teaming will not suc- ceed. , given the holistic care mission of the ccrc, the opening message of our team meet- ings is always the same: ) the work before the members requires a group effort and ) the best solutions will come from the team’s collective wisdom. therefore, everyone is expected to attend the meeting and to participate in the work of the team. the group convenes at the same time ( : a.m.) on the same wednesday of each month. table . barriers to effective interdisciplinary teaming in long-term care i. familiar or static routines resistant to change • regulatory mandates • preference for discipline-specific practice • blurred focus on improving resident care ii. time constraints • scheduling difficulties for the team members • lack of organizational commitment to team meetings • low expectations for attending meetings • lack of good team models or prior interdis- ciplinary experiences • few interdisciplinary opportunities during formal educational experiences • low trust and/or respect among potential team members • prior negative experiences with disciplinary turf battles iii. lack of an effective organizational leader to create an interdisciplinary team geriatric nursing, volume , number coffee and a light breakfast are served for those in attendance. the relaxed meeting atmosphere and spirit of collegiality give members the free- dom to move around during the meeting without disturbing others or disrupting the discussion. all members view interdisciplinary meetings as stimulating and satisfying opportunities to engage in high-quality care planning activities. good interdisciplinary models most health care professionals have never had experience with or instruction about how to work in an interdisciplinary environ- ment. , , there are pitfalls in the process. for example, the spirit of interdisciplinary work can easily break down into professional turf wars and resentment when others make sug- gestions about elements of practice that histor- ically belong to a given discipline. in the case of medication utilization review, consulting pharmacists and physicians often find themselves trying to negotiate the meaning of interdisciplinary work and collaboration. similarly, nurses may feel out of the input and decision-making loop that exists between the pharmacist and the physician. in our experience, fully integrating the consulting pharmacist into the team provides this team member with knowl- edge of the residents, opportunities to interact with the nursing staff on a personal basis, and a synergistic working relationship with the med- ical director and the nursing staff during team meetings. it is common in meetings for the nurs- es, the dietician, or the medical director to ask the consulting pharmacist for his opinion. ideally, health and human service profession- als will increasingly be exposed to interdiscipli- nary models of care while they are in training. for those professionals already in practice, modeling the collaborative practices of others will have to suffice. in our work, the develop- ment of the team was not driven by preexisting experiences with interdisciplinary teaming models or preconceptions about how the model should work. rather, the spirit of teamwork was first embraced by the medical director and the director of health services. the trust and enthusiasm that other team members observed in the relationship between these organiza- tional leaders gave them confidence to partici- pate in team meetings. because the facility’s medical director chairs the committee, he has to be sensitive to tradi- tional power hierarchies in health care settings and ensure that everyone on the team has a chance to participate in discussions. paying close attention to body language and inviting individual team members to comment, who may otherwise be hesitant to participate, are important functions for a physician who chairs an interdisciplinary team meeting. by design, the director of health services for the organiza- tion, who is a nurse, takes a leadership role only when an administrative decision needs to be made. this approach avoids the model in which an agency administrator and the medical direc- tor have discussions and make decisions that are void of team input. when team members understand that their expertise counts in care planning decisions and that they are expected the ccrc interdisciplinary team at work. geriatric nursing, volume , number to participate in care planning decisions, an enthusiastic and cohesive team will develop. conclusion many nursing facilities complete medication utilization reviews because they are required to do so. what may be lacking is a more dynamic and comprehensive review process for total resident care. organizations that desire a more effective process would do well to follow sim- ple suggestions. • first, choose an effective team leader or coleaders to maximize team involvement in resident care discussions. • second, place medication utilization review in the large context of exemplary resident care. • third, expect all staff members to prepare for team meetings and to participate fully in the discussions. • fourth, help team members learn to trust and respect each other and to see team meetings as opportunities for ongoing edu- cation and professional development. our team has had the advantage of a stable membership for a number of years. how- ever, each time a new member is added, an assimilation process must occur to main- tain team trust and respect. • finally, do not allow a mandated activity to become so rote that the value and intent of the activity are lost in the process. currently, many facilities are looking for ways to improve medication management and to reduce error and adverse events. as we described in this article, at least some of this change will come from the commitment of the interdisciplinary team members to go beyond minimum performance standards and to redis- cover the excitement that comes from knowing that they are creating “best practices” within their own organization. moreover, teams that work in high collaborative cultures are widely known to produce superior clinical outcomes of care. references . tobias de, sey m. general and psychotherapeutic medication use in nursing facilities: a year national survey. consult pharm ; : - . . gurwitz jh, field ts, avorn j, et al. incidence and preventability of adverse drug events in nursing homes. am j med ; : - . . harjivan c, lyles a. improved medication use in long- term care: building on the consulting pharmacist’s drug regimen review. am j manag care ; : - . . kubacka rt. a primer on drug utilization review. j am pharm assoc ;ns : - . . mendelson d, ramchand r, abramson r, et al. pre- scription drugs in nursing homes: managing costs and quality in a complex environment (issue brief no. ). washington, dc: national health policy forum; . . maclean ds. drug regimen review: bane or boon? caring ages ; : , . . dyer cc, oles ks, davis sw. the role of the pharma- cist in a geriatric nursing home: a literature review. drug intell clin pharm ; : - . . hanlon jt, shimp la, semla tp. recent advances in geriatrics: drug-related problems in the elderly. ann pharmacother ; : - . . strandberg lr, dawson gw, mathieson d, et al. effect of comprehensive pharmaceutical services on drug use in long-term care facilities. am j hosp pharm ; : - . . robertson d. the roles of health care teams in care of the elderly. fam med ; : - . . tuchman li. the team and models of teaming. in: rosin p, whitehead a, tuchman li, jesien gs, begun al, irwin l, editors. partnerships in family-centered care. baltimore: paul brookes; . p. - . . travis ss, duer b. interdisciplinary management of the older adult with cancer. in: luggen a, meiner s, edi- tors. handbook for care of the older adult with cancer. philadelphia: oncology nursing press; . p. - . . travis ss, larsen, p. palliation and end of life care across health care settings. in: matzo m, sherman s., editors. gerontological palliative care nursing. st. louis: mosby; . p. - . . clark pg. values in health care professional socializa- tion: implications for geriatric education in interdisci- plinary teamwork. gerontologist ; : - . . larson el. new rules for the game: interdisciplinary education for health professionals. nurs outlook ; : - . . cafiero ac. reducing medication errors in a long- term care setting. ann long-term care ; : - . . grumbach k, bodenheimer t. can health care teams improve primary care practice? jama ; : - . judy binch, rn, is now retired but served as director of health services; ron beamon, md, is medical director; stephanie clontz, bsw, is a health center bsw; patti goodwin, rn, bsn, is nurse manager; heather hartwig, ctrs, is health center therapeutic recreations coordinator; ratna kolhatkar, rd, is dietitian; mike list, rph, pharm d, is consulting pharmacist—all at the pines at davidson in davidson, north carolina; shirley s. travis, phd, aprn, faan, is dean, college of nursing and health science, george mason university, fairfax, virginia. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . geriatric nursing, volume , number geriatric nursing national conference of gerontological nurse practitioners pharmacology update: dementia ann schmidt luggen, phd, gnp the food and drug administration (fda) has approved prescription drugs for the treatment of alzheimer’s disease (ad). four of these are cholinesterase inhibitors and are usually used for the treatment of mild to moderate ad. the fifth drug (memantine) is an nmda (n-methyl d- aspartate) antagonist and is usually used to treat moderate to severe ad. no study has been pub- lished that directly compares these drugs to one another; however, the national institute on aging (nia) has published a summary that provides information in a table format for easy review of information about all of these drugs. this infor- mation is provided in the following table, although drug has been omitted (tacrine or cognex®) because it is no longer marketed by the manufacturer. drug/action type and treatment recommended dose interactions aricept® (donepezil) a cholinesterase mg qd; increase to none observed in lab prevents breakdown inhibitor used to treat mg qd after – studies; nsaids should of acetylcholine in mild to moderate ad weeks if well tolerated be used with caution the brain with donepezil* exelon® (rivastigmine) a cholinesterase . mg bid; total of none observed in lab prevents breakdown inhibitor used to treat mg/day; increase by studies; nsaids should of acetylcholine and mild to moderate ad mg/day every weeks be used with caution butyrlcholine in the to mg bid ( mg/day) rivastigmine brain† if well tolerated reminyl® (galantamine) a cholinesterase mg bid ( mg/day); nsaids should be used prevents breakdown of inhibitor used to treat increase by mg/day with caution with acetylcholine and stimu- mild to moderate ad in weeks to mg galantamine; drugs lates nicotinic receptors bid ( mg qd) if well with anticholinergic to release more acetyl- tolerated; increase to properties, especially choline in the brain mg bid ( mg/day) antidepressants such if well tolerated as paroxetine, fluoxetine, fluoxamine, and amitripty- line cause retention of galantamine, which may cause problems namenda® (memantine) nmda antagonist mg qd; increase to other nmda antagonists blocks toxic effects used to treat moderate mg bid ( mg/day) such as amantadine, dex- associated with excess to severe ad after week if well tromethorphan, and keta- glutamate and regulates tolerated; continue to mine have not been fully glutamate activation increase weekly up to investigated with meman- mg/day in divided tine and should be used doses (bid) if well with caution with this drug tolerated definitions of acronyms: ad, alzheimer’s disease; bid, twice daily; nmda, n-methyl d-aspartate; nsaids, nonsteroidal anti-inflam- matory drugs; qd, daily. *increased risk of stomach ulcers when used with cholinesterase inhibitors. prolonged use of nsaids (non-steroidal anti-flammato- ry drugs) such as aspirin or ibuprofen can cause ulcers even when used alone. †butyrlcholine is a chemical in the brain that is similar to acetylcholine. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . the information in this column has been obtained from the national institutes of health, national institute of aging, january , . the web site is available at: www.alzheimers.org/pubs/medications/htm. the information contained in the table is a brief summary and should not be assumed to be complete but should provide minimal guidance to practitioners. the drugs listed are used to delay or prevent increasing symptomatology in those with ad. they help for a limited time and may control some of the behavioral symp- toms of ad. researchers do not completely understand how cholinesterase inhibitors work to treat ad, although it is known that they prevent breakdown of acetylcholine, which is important for memory and cogni- tive function. in advancing ad, less acetylcholine is produced, thus the limited use of these drugs. nmda antagonists are used to delay progression of symptoms (for example, loss of self-toileting) of moderate to severe ad. this drug regulates glutamate which causes cell death in excessive amounts. the two kinds of drugs can be used together at the moderate stage of ad because they work differently. http://www.alzheimers.org/pubs/medications/htm gerontologic nurse practitioner care guidelines: dementia behaviors: recognition and management ann schmidt luggen, phd, gnp causes of dementia there are many causes of dementia. the best known, alzheimer’s disease (ad), is also the most common, accounting for at least % to % of dementias. dementia with lewy bodies (dlb) is the second most common cause of bly making up % to % of dementia is thought to be the mon cause of dementia, ac- to % of cases. an elder may one type of dementia at the ever, and because subcortical ia (svd) is caused by chronic e common in elders—hyperten- s—it is likely to occur in com- er forms. the least common of re the frontal temporal lobe s). pick’s disease is the most e rarer types. others include ssive supranuclear palsy, corti- ration, parkinsonism linked to , and neurofibrillary tangle lassification of ftds is ongo- entia, of less concern today, is by syphilis, a disease that is on in the united states. other used by vitamin b- deficien- sm, and alcoholism to name a ately causes of dementia. oblems are reversible. of dementias ill know that ad and vascular e differentiated by their pres- slow and insidious; vascular “stepping stone” advancement progression of multiple small compares the most common veral variables. ommon to dementias thing to remember is that like s are in the eye of the beholder. disturbing to the person with be very disturbing to family caretakers in a long-term care ehaviors may be disturbing to geriatric nursing, volume , number dementia, proba cases. vascular third most com counting for % have more than same time, how vascular dement problems that ar sion and diabete bination with oth the dementias a dementias (ftd common of thes ftdp- , progre cobasilar degene chromosome dementia. the c ing. another dem dementia caused the rise again dementias are ca cy, hypothyroidi few of approxim some of these pr recognition most readers w dementias can b entation. ad is dementia has a caused by the strokes. table dementias on se behaviors c one important beauty, behavior what may not be dementia may members or the setting. certain b geriatric nursing, volume , number the patient, however, yet not always discernible to others. pain can be a common precipitant of disturbing behaviors and is difficult for the patient and staff if not managed. the most disturbing behaviors in the home are suicide threats, agitation, insomnia, rest- lessness with wandering, and incontinence behaviors. in the nursing home, agitation, screaming, and combativeness are disturbing behaviors because they upset other residents as well as the staff. inappropriate sexual behav- iors can be distressing to other residents and visitors as well. causes of behaviors gerontological nurse practitioners know well that the most common causes of behavior changes are urinary tract infections (uti) and respiratory infections. a high index of suspi- cion is essential in any setting if there is an abrupt change in behavior. infection may pre- cipitate a fall, cause pain, or cause metabolic changes if eating and drinking are slowed; hypoxia may occur with pneumonia and increase confusion. a new drug may cause a change in behavior, especially if it is an anti- cholinergic drug such as benadryl®. some changes in behaviors with dementia are actually delirium. hypoglycemia, encephalitis, medications, hypoxia, and intracranial bleed may be manageable. it is important to work up the uti or respiratory infection immediately to begin the search for other problems in the event that these are not the source of behavior change. depression can also be confused with demen- tia. like dementia, the onset is usually slow and insidious. it commonly occurs in those with dementia, especially dementia with lewy bod- ies. it is common to miss this diagnosis. in an elder with dementia, the loss of a roommate or lack of family attention in the nursing facility can precipitate or aggravate an already present depression. management of behaviors environmental manipulation is an excellent start for management of disturbing behaviors. strict routines in the daily schedule are relaxing to the anxious or restless elder. toileting every hours is helpful for the elder who is beginning to become incontinent. nightlights are often mentioned as helpful tools. i find that even in early dementia or for those in a new environ- ment, nightlights are confusing, changing the environment so that it is unrecognizable. usual table . differentiating dementias - type age at onset/sex prognosis symptomatology alzheimer’s +, greatest in +, – years median, gradual memory loss, change in disease most common in range – personality, loss of language skills, women disorientation, impaired judgment dementia with - , most common + years rigidity, visual hallucinations, slowed lewy bodies in men movements, fluctuation in cognition vascular s, most common depends on control amnesia, aphasia, apraxia, depres- in men of causative factors: sion, socially inappropriate behaviors, hypertension, loss of visual field, seizures, paralysis diabetes, lipids other < – years (pick’s) disinhibition, poor insight, apathy, (pick’s) verbal aggression, hygiene neglect, perseveration,* (pick’s) neurosyphilis, memory loss, hallucinations, loss of language skills *perseveration = repetitive thoughts. geriatric nursing, volume , number lighting, at least in the hallway, is more useful for those who have insomnia, or in those for whom day becomes night and night becomes day, which commonly occurs in dlb. separating residents in the nursing home can be helpful if some are particularly disruptive (e.g., residents who scream, rummage through other residents’ rooms and drawers, climb into others’ beds, etc.). these behaviors are disturb- ing and cause stress to many residents with dementia. methods to decrease environmental stress are helpful. maintaining a safe environment is difficult in the home and is one reason many elders are moved to the nursing home. in this instance, the nursing facility can generally provide a safe environment. a rule is that the best quality of life for an elder is the least restrictive environ- ment, and this can be provided in a nursing facility. conducting an environmental assessment of stressful stimuli is a good practice in any set- ting. auditory, visual, tactile, and multiple com- peting stimuli are unmanageable for elders with dementia. tvs that are on all day can precipi- tate hallucinations in those vulnerable to this problem, for example, the elder with dlb. the elder cannot distinguish reality from tv drama. conversations should not be complex because they will not be understood. open-ended ques- tions (e.g., “why?”) are useless. “what would you like to wear today?” will go unanswered. a better choice is, “would you like to wear a blue shirt? here, this is a blue shirt.” too often med- ical management is seen as the answer for nurs- ing facility staff and managers. medical management of behaviors a number of helpful drugs are available now that are effective in slowing the progression of dementia and reversing behaviors disturbing to the elder. cholinesterase inhibitors approved by the food and drug administration (fda), including aricept®, exelon®, and reminyl®, are used extensively today. cognex or tacrine is no longer on the market but was the first drug on the market for treatment of ad. a number of drugs can be useful to treat psy- chosis and agitation that can be problematic in moderate to severe dementia. risperidone is an atypical antipsychotic that has been studied extensively. the atypical antipsychotics have fewer extrapyramidal effects compared with the older antipsychotics of to years ago. other medications for this purpose include olanzapine, quietapine, and aripiprazole, and others. these drugs have not been found to be superior to other agents in treating elders with dementia; however, they are safer, more easily tolerated, and have fewer side effects. clozapine is another drug in this class, but it has major side effects and is not recommended for patients with dementia. references . stanley m, blair k, beare pg. dementia in older adults. in: gerontological nursing. rd ed. philadelphia: fa davis; . p. - . . alzheimer’s disease education and referral center (adear). frontotemporal dementia: growing interest in a rare dementia. connections ; ( ): - . . aung m, benias p, edwards b, wolf-klein g. dementia, possibly caused by syphilis in elderly patients. long- term care interface ; ( ): - . . fiore p. management of behaviors in seniors with dementia. presented at the th annual conference of kentucky nurse practitioners/nurse midwives, louisville, kentucky, april , . . cme consultants. special report: update in the treat- ment of psychosis in the elderly. available at www.cmezone.com. accessed november, . ann schmidt luggen, phd, gnp, is a professor at northern kentucky university in highland heights, and a geriatric nurse practitioner at evercare. she serves as ncgnp section editor for geriatric nursing. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . http://www.cmezone.com geriatric nursing, volume , number the rapid increase in the number of elders who need dementia care and the critical need for skilled care providers prompted florida legislators to enact legislation to im- prove the care of these residents. one com- ponent of the new legislation mandated dementia training for long-term care staff and led to the development of dementia care competencies that would guide a com- petency-based curriculum to meet the demand for training. the competencies, methods used for development, and infor- mation regarding how to access these newly developed resources are described in this article. (geriatr nurs ; : - ) d emographics related to the care of resi- dents in long-term care (ltc) are pro- viding the impetus to improve care in nursing homes for residents with dementia. at least % of all nursing home residents have some form of dementia, and that number will continue to grow. consistent with this trend, the state of florida legislature enacted major reforms in through senate bill . the legislation established new nurse staffing lev- els, dementia training for staff, and tort reform. specifically, the legislature mandated that all nursing home staff members who have direct contact with residents receive hour of required dementia care education and further, that clinical staff with direct patient contact receive additional hours of dementia training (sb , page , section ). the state of florida allocated responsibility for the implementation of this new law to state agencies—the department of elder affairs (doea) to “prescribe training standards” by establishing a program to approve curriculum and certification of alzheimer’s trainers and the agency for health care administration (ahca) to monitor if nursing home staff received the required dementia training as proscribed by law. new rules, based on the language of sb , were promulgated by the doea, including a set of recommendations called “training guidelines for the special care of nursing home residents with alzheimer’s disease or related disorders (adrd).” these rules required hour of content to include an understanding of adrd, charac- teristics of adrd, and communicating with res- idents with adrd, as well as additional hours of content for direct-care staff to include infor- mation on behavior management, assistance with activities of daily living, activities for resi- dents, stress management for the caregiver, fam- ily issues, resident environment, and ethical issues (florida administrative code a- . . f.a.c.). the state of florida had a unique resource to help develop new materials to meet the training requirements. in , recognizing the increas- ing number of elders in florida and the need to educate health care providers about how to care for them, the state funded the teaching nursing home (tnh) to “formulate, implement, advocate, and disseminate best practices.” florida house bill charged ahca with the establishment of a teaching nursing home pilot project “to improve and expand capacity of florida’s healthcare system to respond to the medical, psychological, and social needs of the increasing population of frail older citizens. in , as the tnh was establishing its structure and products, the advisory committee chose to develop a model curriculum to meet the new dementia training requirements. the tnh steering committee convened a statewide advisory committee of dementia care ex- perts, who were given the charge for curricu- lum development. the advisory committee of dementia care experts included representa- tives from ahca, doea, the alzheimer’s association, florida association of homes for the aging (faha), florida health care associ- ation (fhca), and the department of veteran’s affairs (dva), as well as from florida’s leading universities and professional organizations. the committee’s responsibility was to create a model for development, dissemination, evalua- tion, and validation of the dementia training materials. christine l. williams, dnsc, rn, bc, kathryn hyer, phd, mpp, annette kelly, phd, arnp, sue leger-krall, arnp, phd, and ruth m. tappen, edd, rn, faan development of nurse competencies to improve dementia care geriatric nursing, volume , number two realities shaped the decision to focus the educational development efforts toward lpns. in and , lpns averaged . hours of care per resident day in comparison to . hours of care from rn staff in florida long-term care facilities. lpns are the largest group of licensed caregivers, and they provide the major- ity of licensed nursing care to long-term care residents. furthermore, at the same time the advisory committee was deciding about the audience for the curriculum, the florida board of nursing approved a rule change to expand lpns’ role to include direct supervision of long- term care paraprofessional staff if the lpn took an additional hours of supervisory training. thus, lpns’ role of caring for residents with dementia evolved to include supervision and mentoring of the most numerous nursing home workers, certified nursing assistants (cnas), who were responsible for the day-to-day care of dementia residents. the advisory committee also realized that the lpn focus would be opti- mal for future repeated efforts; professional materials could be edited for the rn audience and simplified for cnas. recognizing that a competency-based curricu- lum is more likely to improve care outcomes, the tnh advisory committee, composed of nursing educators and experts in dementia care, met to develop dementia education competen- cies. this initial process of competency develop- ment was considered crucial; it drove the con- tent development and is the focus of this article. development of competencies ballantyne and colleagues stressed the need for the development of competency criteria that could ensure effective care provided by nurses working with the older adults. zhang defined nursing competencies as “sets of knowledge, skills, traits, motives and attitudes that are required for effective performance in a wide range of nursing activities” (p. ). to begin the process of developing competencies, a literature search was conducted. results indicated that although significant progress has been made toward the development of “best practices” for care of the older adult, little published material was available directed specifically toward lpn practice in ltc and the person with dementia. competency-based education focuses on per- formance of measurable outcomes; the value of this approach is that one can measure outcomes by assessing differences in quality of care per- formed by the care provider. in an attempt to implement the state mandate and improve care delivery in ltc, the task force focused on the development of competencies that would pro- vide desired outcomes for the curriculum. a review of lpn curricula, national league for nursing (nln) publications, and florida scope of practice for lpns was completed, providing necessary direction to identify the appropriate level of knowledge, skills, and attitudes. the task force identified a comprehensive level of dementia knowledge necessary to pro- vide high-quality care. members further delin- eated which of these content areas were basic to dementia care delivery and necessary to include in the initial hour of training and which would be included in the additional hours of training mandated for direct care staff. advanced competencies, such as identification and treatment of pain in dementia and end-of- life care, were identified but could not be included in the initial state-mandated training because of time constraints. it was decided that content with this focus could be developed at a later date, building on the basic knowledge mandated in the training hours. another dilemma was how to integrate the state-mandated areas with the outcome compe- tencies defined by the group and considered crucial to quality care. for example, the group had identified competencies related to the importance of the ltc environment well beyond the training guidelines promulgated by doea. the group recognized the importance of quality of life for persons with dementia as well as ethical content and chose to include these additional competencies. negotiations involved a year-long process of competency develop- ment, presentation and feedback from an advi- sory committee, and development and contin- ued refinement of content modules. taylor identified broad areas of nursing competencies—interpersonal, intellectual, tech- nical, and moral—and stated that nurses often emphasized technical and intellectual compe- tencies to the exclusion of interpersonal and moral competencies. the task force group con- curred that it was important to include moral and interpersonal competencies, especially con- sidering the care required for the vulnerable population experiencing dementia in nursing homes. the task force evaluated the competen- cies needed for dementia-specific care in long- term care, with a broad focus of including the geriatric nursing, volume , number intellectual skills required in the state man- date and the additional moral and interper- sonal skills the group considered important to quality of care. for example, one of the state- mandated content areas was “managing prob- lem behaviors.” members of the task force decided to shift the focus to person-centered care that involved responding to the needs of the resident rather than focusing on the prob- lem for the staff. this philosophy is consistent with the national alzheimer’s association approach to care. taylor defined the compe- tencies as abilities in a variety of domains (see table ). table . domains for nursing competencies interpersonal establishing and maintaining caring relationships intellectual reasoning to achieve valued goals technical manipulating equipment skillfully moral living is consistent with one’s personal moral code and role responsibilities table . nursing and dementia competencies dementia-specific competencies: phase training nursing competencies competency . understands the characteristics of dementia and intellectual, interpersonal the special needs of the person with dementia competency . adapts communication to cognitive/emotional interpersonal needs of the person with dementia competency . demonstrates a working knowledge of dementia intellectual competency . recognizes, prevents, and manages distress interpersonal, moral behaviors including agitation, pacing, exit-seeking, combativeness, withdrawal, and repetitive vocalizations competency . understands special needs of family and friends of interpersonal, intellectual persons with dementia competency . promotes independence in activities of daily living intellectual, interpersonal competency . promotes an optimal environment that will support intellectual, interpersonal resident autonomy and enhance capabilities competency . recognizes ethical issues that arise in dementia care moral, intellectual and incorporates these into care approaches note: these categories (excluding the technical category) provided a framework from which to organize the competencies that were developed (see table ). geriatric nursing, volume , number table . competencies phase . hour of training competency : understands the characteristics of a dementing illness and the special needs of the person with dementia knowledge, skills, attitudes: • defines dementia as decreasing brain function including memory problems, loss of some thinking and communication skills, and changes in personality • contrasts dementia with cognitive changes of normal aging and delirium • describes the early, middle, and late phases of dementia • recognizes and incorporates into the dementia care plan that quality of life is a realistic goal • interprets individual responses, mood, and other feedback as meaningful • seeks to create a homelike and comfortable environment • seeks a wide range of resources, such as community volunteers in daily care, whenever possible • uses individual’s preferences and social history in daily practice competency : adapts communication to cognitive/emotional needs of the person with dementia knowledge, skills, attitudes: • explains changes in communication skills that occur during progression of dementia • describes the relationship between communication and distress behaviors • demonstrates strategies for effective verbal and nonverbal communication • uses touch to gain person’s attention • uses simple sentences • presents idea at a time • asks question at a time • avoids negatively worded statements • breaks down tasks • gives simple choices • identifies nonverbal expressions of physical discomfort and pain • demonstrates communication skills and strategies for managing disruptive, aggressive, or other problem behavior • listens and responds to emotional message • uses verbal redirection • uses written and visual cues • allows time to respond • avoids asking “why,” arguing, correcting misinformation, confrontation • avoids raising voice • avoids sarcasm with person with dementia • demonstrates desired action • reacts appropriately to negative communication by individual with dementia • avoids responding to negative language by individual with dementia • uses redirection • reinforces (own) positive (caregiver) self-image using techniques such as positive self-talk • discusses cultural differences in individuals with dementia and how to appropriately adapt com- munication strategies • includes emotion-focused communication strategies in interactions with individuals • gives recognition • expresses positive regard • uses verbal encouragers • explores incomplete expressions of ideas table . competencies (continued) • adopts an attitude of respect for individuality and dignity of the person with dementia • uses individual’s name in communication • approaches individual in a calm, unhurried manner • avoids confrontation and arguments in communication phase : – hours of training competency : demonstrates a working knowledge of dementia knowledge, skills, attitudes: • lists several diseases or conditions that may cause dementia • identifies polypharmacy, depression, and other conditions that may result in symptoms of dementia • describes how the disease progresses, as well as its symptoms, behaviors, and challenges associ- ated with each stage. • discusses current research findings, including the research on cause, prevention, cure, and the recommended diagnostic process competency : recognizes, prevents, and manages distress behaviors including agitation, pacing, exit-seeking, combativeness, withdrawal, and repetitive vocalizations knowledge, skills, attitudes: • recognizes antecedents and consequences for distress behaviors • monitors, documents, and reports to team the time, place, and circumstances accompanying dis- tress behaviors • looks for patterns that reveal potential causes (correlates vs. triggers) of distress • monitors, documents, and reports to team staff responses to residents’ distress behaviors and resi- dents’ responses to consequences • in collaboration with interdisciplinary team and family, plans prevention or modification strategies and addresses residents’ needs • under the direction of a registered nurse, teaches and supervises nursing assistants regarding their responses to dementia-related behaviors • assists in the design and implementation of care plan • cooperates in modification of care plan • teaches and supervises nursing assistants in reporting behaviors • under the direction of a registered nurse, teaches and implements recommended staff stress- relieving strategies such as social support • promotes quality of life and mental health consistent with resident’s individual history and prefer- ences through: - pet therapy - music therapy - structured activities - family photos and/or tape recordings - physical exercise • describes the risks associated with wandering, pacing, and exit-seeking • identifies and addresses mental health issues appropriately • identifies and reports symptoms of psychological distress, acute confusion, or depression • describes the effects of pain, illness, limited mobility, and sensory loss on behavior • discusses the use, effects, side effects, and undesirable effects of medications used in memory loss • discusses the use, effects, side effects, and undesirable effects of medications used to manage symptoms of dementia • understands the use and misuse of restraints geriatric nursing, volume , number geriatric nursing, volume , number table . competencies (continued) competency : understands special needs of family and friends of persons with dementia knowledge, skills, attitudes: • discusses the psychological needs and stress of family members including - stages of grief, anger, concern, and guilt - cultural differences in expressions of grief, anger, concern, guilt - how to respond to family expression of these needs and stresses • identifies and reports family member needs, problems, and concerns to the team • plans with team strategies to address family issues and includes family input • supervises nursing assistants regarding their responses to families’ concerns • includes family members in planning care and devising strategies as a means to provide quality care • incorporates resident’s philosophy and values in an individualized care plan competency : promote independence in activities of daily living knowledge, skills, attitudes: • incorporates an approach to remaining capabilities and capitalizes on individual’s potential for rehabilitation • breaks tasks down to manageable components • promotes independence in activities of daily living • looks for appropriate process as outcome in chosen activities rather than successful product • encourages direct care staff in “doing with” rather than “doing for” approach to activities of daily living • allows for personal choices and preferences using past history and other family information competency : promotes an optimal environment knowledge, skills, attitudes: • maintains safety and security of residents • monitors environmental stimuli • provides information as to date, day, season, and weather • ensures needed auditory and visual aids and mobility and memory aids • increases lighting to prevent shadows • identifies and responds to individual’s feelings and fosters their expression • reduces isolation through group activities, through family, friend, and community visits, and intergenerational experiences • in collaboration with other departments and consultants, promotes physical, social, and mental health • avoids overhead paging • promotes social interaction among individuals with dementia as well as staff members • uses simple designs and colors • avoids mirrors in hallways or common rooms • provides sheltered freedom • initiates appropriate conversation to maintain abilities • provides opportunity for productivity • decreases background noise (e.g., tv, radio) • while maintaining resident confidentiality, posts signs as reminders; puts labels on family photos, uses other written cues • promotes constancy and predictability through a consistent and individualized routine, familiar care- givers, and appropriate activities dementia-specific competencies were priori- tized for each phase of state-mandated training. phase ( hour of training) included an overview of dementia and communication issues. phase included more detailed content on dementia and its treatment, related behav- ioral changes, the role of the family, and ethical issues. time constraints of the state-mandated training necessitated creating advanced compe- tencies for other content that the task force considered important but could not be included in either phase or phase (see table ). the task force constructed a draft of the lpn competencies, as well as a diagram depicting the progression from core to advanced competen- cies within a novice-to-expert framework. the draft was distributed to the advisory committee members for review and in a face-to-face meet- ing; each competency was discussed along with questions and comments from lpns at the tnh who reviewed earlier drafts. suggestions from the wider group were incorporated, and consen- sus was reached. the revised document was dis- tributed by e-mail for comments and revisions. at the end of , the final version was ready to be used for the development of the curriculum. although core competencies will change as knowledge and skills in dementia care advance, the list in table represents the current con- sensus of the tnh steering committee. the proposed phases of training for lpn competen- cies is organized to reflect training that might occur in - and -hour sessions in compliance with the dementia training mandate of sb . with the projected increases in the number of elders with dementia in nursing homes and the rapidly growing dementia population in the ltc system in florida, it was imperative to ensure that florida’s nursing home care providers were prepared to care for these residents. the florida legislature signed into law sb in to begin the process of improving demen- tia care. legislation passed in requires the same -hour mandatory dementia training for hospice and adult day care personnel and rec- ognizes the pressing need to train all staff who work with community living elders to be com- petent in dementia care. table . competencies (continued) competency : recognizes ethical issues that arise in dementia care and incorporates these into care approaches knowledge, skills, and attitudes: • articulates an awareness of issues such as privacy, honesty, and autonomy in the daily care of persons with dementia • identifies common ethical conflicts that may arise when caring for residents with dementia • discusses ethical decision-making process using problem-based learning • recognizes variability in family and cultures in making ethical decisions • identifies the resources available for resolving ethical dilemmas advanced competencies • to prevent excess disability, incorporates an approach to support remaining capabilities and capi- talizes on potential for rehabilitation • identifies physical discomfort, pain, fatigue, dehydration, hunger • identifies verbal and nonverbal pain and discomfort, reports changes in cognitive function, antici- pates individual’s needs to prevent pain, fatigue, dehydration, and hunger and assists with plan to address same • understands the end-of-life issues facing residents, staff, families, and guardians related to dementing illness • explains the complex and terminal nature of providing care for persons with advanced, progres- sive dementia • incorporates palliative care principles into planning, supervision, and delivery of care • discusses the concept and implementation of an advance directive geriatric nursing, volume , number geriatric nursing, volume , number the competencies for dementia care and the curriculum based on those competencies are cur- rently available through the tnh online educa- tional site geriu (www.geriu.org). geriu is the first online geriatric university dedicated specifi- cally to the provision of accurate and timely information on the care of older patients for health care providers. although these education- al resources were developed with state of florida funding for florida nurses, by accessing this web site, any health care provider can use the demen- tia education learning modules without cost. the learning modules are available from the “public content” link at the geriu web site. from there, the learner will be directed to a link to florida’s teaching nursing home program. the instruc- tional activities titled “nursing home alzheimer’s disease and related disorders training for lpns” include learning modules divided into sections representing basic and more advanced training. the basic modules (“understanding dementia” and “communication”) provide an overview of dementia, quality of life, person-cen- tered care, types of communication, and accom- modations to improve communication with cog- nitively impaired residents. there are modules that make up the second phase of the program (“distress behavior,” “loved ones,” “activities of daily living,” “environment,” and “ethics”). each module begins with a set of objectives, followed by learning activities, practice exercises, and resources for further information. modules are presented as computer-based interactive learning that can be completed independently. a complete description of the training materi- als and the curriculum is beyond the scope of this article; it will be the subject of a forthcoming paper. the results of a preliminary evaluation of the program are reported elsewhere. with its high concentration of older residents, florida is positioned to develop models of care and educa- tion for long-term care providers. this article has described the process we used to develop not only the most comprehensive competencies to guide staff training but also the need to establish buy-in from all of the constituents who provide and would benefit from this training. references . fries be, schroll m, hawes c, et al. approaching cross-national comparisons of nursing home resi- dents. age ageing ; : - . . hebert le, scherr pa, bienias jl, et al. alzheimer disease in the u.s. population: prevalence estimates using the census. arch neurol ; : – . . polivka l, salmon jr, hyer k, et al. the nursing home problem in florida. gerontologist ; (special issue ii): - . . harrington c, carrillo h, crawford cs. nursing facili- ties, staffing, residents, and facility deficiencies, through . table , “average rn, lpn/lvn, & assistant hours per resident day in all certified nursing facilities in the us.” p. . san francisco: department of social and behavioral sciences, university of california san francisco; august . . ozcan ya, shukla rk. the effect of a competency- based targeted staff development program on nursing productivity. j nurs staff dev ; ( ): - . . ballantyne a, cheek j, o’brien b, et al. nursing com- petencies: ground work in aged and extended care. int j nurs pract ; : - . . zhang z, luk w, arthur d, et al. nursing competen- cies: personal characteristics contributing to effective nursing performance. j adv nurs ; : - . . regenstreif di, brittis s, fagin cm, et al. strategies to advance geriatric nursing: the john a. hartford founda- tion initiatives. j am geriatr soc ; : - . . taylor c. rethinking nursing’s basic competencies. j nurs care quality ; ( ): - . . fazio s, semen d, stansell j. rethinking alzheimer’s care. baltimore: health professions press; . . mintzer mj, hyer k, williams c, et al. statewide devel- opment of a curriculum for lpns caring for residents with dementia in long-term care [working paper]. . . ruiz j, mintzer mj, hyer k, et al. the educational impact of a computer-based training tutorial on dementia in long term care for licensed practical nurs- ing students. accepted for publication. gerontol geriatr educ . christine l. williams, dnsc, rn, bc, is associate pro- fessor, university of miami school of nursing, coral gables. kathryn hyer, phd, mpp, is associate professor, school of aging studies, college of arts and sciences, university of south florida, tampa. annette kelly, phd, arnp, is assistant professor of nursing, florida southern college, lakeland, and executive director, alzheimer’s association (central and north florida). sue leger-krall, arnp, phd, is director of research and community clinical servic- es, river garden hebrew home/wolfson health and aging center, jacksonville. ruth m. tappen, edd, rn, faan, is professor and eminent scholar, college of nursing, florida atlantic university, boca raton. acknowledgment the authors acknowledge the stein gerontological institute and the work of the members of the teaching nursing home steering committee and advisory committee. with their countless hours of discussion, sug- gestions, and critique, it was possible to arrive at compe- tencies that reflect the viewpoints of multiple stakeholders within the florida long-term care system. this work was supported by the agency for health care administration, state of florida. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . http://www.geriu.org in any practice setting, professional nurses must be skilled to assess and manage med- ical problems rapidly. post-fall assessment among those with dementia is a daunting task. emergent medical problems after a fall are difficult to detect among those with dementia, because impaired communica- tion portrays a false reality that the older adult is uninjured. furthermore, early detec- tion of potential post-fall injuries may not occur within a health care system that relies on verbal communication and eyewitness accounts as the main source of fall occur- rence information. professional nurses must turn to other means of fall detection. one such strategy relies on observable changes in function and behavior, such as a recent decline in mobility, change in gait, level of consciousness, neurological func- tion or vital signs. those most susceptible exhibit prior observable signs of visual-spa- tial impairment such as impaired clock drawing, gait apraxia, and inability to nego- tiate their environment without falling. (geriatr nurs ; : - ) p erhaps the most difficult assessment of any condition comes when an older adult client cannot vividly recall an event, or circumstances surrounding that event, for which an evaluation is requested or sought. when the event in question is a fall, the difficul- ties are no less complex. if a fall happens to occur within the confines of a long-term care facility, clinicians search for validation that the fall occurred by questioning staff members and families. if no eyewitness accounts are avail- able and others deny the occurrence, clinicians may still wonder, did the fall actually happen? although there is no “absolute,” evidence-based technique to answer this question, there are a handful of valuable clinical findings that indi- cate a recent fall occurrence among older adults with dementia. early detection of any fall is crucial to treat underlying predisposing fac- tors such as orthostatic hypotension or infec- tion and to assess for injury. when a fall is sus- pected in a person with dementia (and impaired communication), time is of the essence because it may be unclear when the fall actually occurred. post-fall assessment of an individual with dementia differs from the standard post-fall assessment of an older adult without dementia. the difference lies in recognizing some of the latent or subclinical findings such as behavioral or functional changes indicative of injury. following a stepwise approach that considers all of the past static characteristics (table ) of the older adult coupled with evaluation of current or dynamic characteristics (table ) are integral components of the post-fall assessment. many of the past static characteristics are well known to the clinician from the medical record and review of fall risk assessment tools. none, however, are more important than current or dynamic events revealed on an immediately performed compre- hensive post-fall assessment. because falling may be unobserved, and the resident may be unaware that it took place, assessment must be thorough and interventions should always con- sider patient safety first. consider this scenario of an ambulatory older adult with advanced dementia who resided in a long-term care unit. mrs. s, aged years, was admitted to a long-term care facility because of con- tinued wandering and getting lost at home. she was diagnosed with moderate stage alzheimer’s disease and demon- strated a need for complete assistance in activities of daily living. she was apha- sic with both expressive and receptive inabilities to communicate, but would roam the long-term care unit for hours on end. after dressing in the morning, she would ambulate back and forth on the unit, stopping to stare at the room num- bers. when approached by name, she con- tinued to walk uninterrupted. mrs. s had deanna gray miceli, dnsc, aprn, faanp falls associated with dementia: how can you tell? geriatric nursing, volume , number geriatric nursing, volume , number no other medical problems and took no medications. one day, staff reported the resident as having upper respiratory symptoms of nasal congestion and poor oral intake that resulted in bed rest. once recovered, the staff noted her balance to be “off” as she leaned to the right and dragged her leg. no adverse events were reported. closer physical examination revealed a large ecchymosis of the right hip and pelvis with exquisite pain to range of motion. an x-ray was ordered of the right hip showing a recent intertro- chanteric fracture. a bone mineral den- sitometry showed no osteoporosis. the likely etiology of the fracture was pre- sumed to be a fall because review of the progress notes showed that while she was in bed, there were several attempts to get out of bed, and on one occasion, she was found sitting on the floor, voicing no complaints. case analysis the onset of an acute medical event as mild as an upper respiratory infection can change baseline patterns of mobility for a resident with advanced dementia. nasal congestion may cause lightheadedness and generalized fatigue exacerbated by restlessness. in this case sce- nario, the resident’s baseline motor function, chronic restlessness, was operative, raising the likelihood of a bed fall. also, evidence of mod- erate dementia and impaired communication precluded a reliable history, therefore symp- toms may never be elicited. rather, more reli- able indicators of a fall might be clinical obser- vation of a change in behavior or function such as limping with ambulation. the clinical relevance of a diagnosis of dementia dementia is a serious, often insidious disease that destroys the white matter substrate of the brain, eventually affecting all aspects of higher cognitive function including mobility. the destruction of white matter involves irre- versible neuronal damage. the location of the destruction is important in terms of areas of cortical involvement, but a diagnosis of table . important static characteristics of the older adult with a presumed fall history dementia* parkinson’s disease* subdural hematoma head trauma/traumatic brain injury hip fracture osteoporosis gait or balance impairment* visual impairment* hearing loss orthostatic hypotension* delirium* medications vasodilators neuroleptics agents that lower blood pressure narcotic analgesia diuretics behavior associated with dementia wandering and elopement agitation and restlessness visual hallucination motor or gait apraxia *items found on fall risk assessment tools. table . important dynamic characteristics of an older adult with a presumed fall assess for acute changes in vital signs level of consciousness neurological system—gait or balance instability skin integrity—skin tear, hematoma, bruises musculoskeletal system—sprain, strain, fracture geriatric nursing, volume , number alzheimer’s disease typically causes global deterioration highlighted by neurofibrial tan- gles and plaques. , one of the most obvious signs of dementia is impaired communication, with both expressive and receptive loss. however, it should be kept in mind that impaired commu- nication, the end product of neuronal dam- age, is only one of the many changes. others include loss of visuospatial skill. if the area of destruction involves the basal ganglia, signs of parkinsonism—such as shuffling with walking, balance instability, and truncal rigid- ity—can be evidenced. these changes supple- ment the chronic disorientation, confusion, and memory loss of dementia. illnesses such as alzheimer’s disease often result in frequent falling because of visuospatial impairment and motor apraxia. (apraxia is loss of a learned skill such as walking, dressing, and bathing.) the baseline cognitive screen using the folstein mini-mental state examination (mmse) can provide invaluable information about the resident’s overall cognitive capabili- ties and executive function noting specific areas of impairment. in particular, the clock- drawing component of the mmse has been shown in research to contribute to the diagno- sis of dementia. the mmse identifies disorien- tation, visuospatial impairment, loss of recall, as well as impaired communication and lan- guage abilities. research centered on clock- drawing skills has found correlations between dementia and impairment in visuospatial abili- ties, as evidenced by impaired clock drawing. in this study, the severity of dementia was found to be a good predictor of the deficit in visuo-constructive performance. in one recent study, the clock-drawing test was a valid screening method for mild cognitive impair- ment. when correlated with neuroanatomy by magnetic resonance imaging, it was found that interruptions in large cortical-subcortical neu- ral networks underlie impairment in the clock- drawing test. given the significance of a diagnosis of dementia, the index of suspicion for a fall among older adults with dementia should be considered high. valuable components of any post-fall assessment when a diagnosis of dementia is present would include interviews of the resident, his or her roommate, or staff; review and observation of baseline function and behavior; and observation for pertinent changes in the resident’s condition. interview the resident there is always the possibility that questions of falling will trigger a memory of a recent or distant fall. care must be taken in the inter- pretation of this information because the resi- dent may be recalling a fall from long ago, and in the absence of a witness, there is no reliable means to determine the accuracy of this description. further probing about where the fall occurred and associated circumstance may reveal the exact time of its occurrence. typical statements from residents with demen- tia who fall include both “i don’t know” responses and “i don’t remember falling.” sometimes having the resident tell his or her story of a recent fall is helpful. this can be noted in the medical record, and should a fall reoccur, another story can be elicited and compared with the previous one. table . tips to possible dementia- related causes of a fall clinical tips clinical progression of white matter dis- ease/dementia impairments in clock drawing (refer to diagnostic criteria) unexplained falls despite comprehensive evaluation motor or gait apraxia sitting down when there is no furniture or object present to sit on with intact vision, walking into objects, furniture, or persons apraxia with walking aids—inability to utilize an aide despite prior knowledge or teaching geriatric nursing, volume , number interview potential witnesses— roomate, staff, and family should a fall occur in the resident’s room or hallway, it is likely to have been observed by someone such as the housekeeper or a room- mate or a staff member. important information includes the nature of the fall in terms of whether the fall was broken by, for example, a slide to the floor, and whether the person land- ed on a hard surface or experienced a head injury. family members may have received a call by telephone from the resident stating that they fell earlier in the day. these sources of information need further follow-up. review baseline behavior and function (static events) the baseline data obtained from the compre- hensive health history and reflected on the minimum data set (mds) provides for a tem- plate of information about overall baseline function, past medical history, and medications. this information forms static characteristics about the resident. key areas to review on the mds include notation of gait or balance impair- ment and behavioral manifestations such as chronic restlessness, aimless ambulation, or wandering. although not on the mds, residents with dementia should be observed for walking into objects such as furniture or into other peo- ple, which suggests visuospatial or judgment impairment. other observations include the inability to judge space relationships, evi- denced by attempts to sit down when a seat or chair is not present. other observations include the resident’s ambulation pattern. does the res- ident take large bounding steps or appear to step over objects on the floor that are not pres- ent? these findings may signal visuospatial impairment or visual misperceptions such as hallucinations, especially when the older adult’s vision remains intact. observe resident function and behavior for change (current-dynamic events) despite an inability to communicate verbally, many nonverbal cues can give light to an impending medical problem. failure to eat or drink as before is often a general marker of an imminent underlying problem. any holding of a body part may be a sign that the resident is experiencing pain at that site. examples include when a resident holds his or her lower back (indicating backache) or the jaw (indicat- ing toothache). inability to walk, stand, or transfer may indicate an underling muscu- loskeletal problem, not solely a cognitive dete- rioration reflective of dementia. changes in behavior such as a new onset or intensification of an existing behavior, such as agitation or restlessness can signal the post-fall effects associated with trauma. all of these changes are significant and require additional assess- ment. assess for pertinent signs or symptoms (current-dynamic events) vital signs provide for important informa- tion about overall physiology and homeosta- sis. residents who have fallen and fractured a rib may present with guarding of respiration and shallow breathing. sudden drops in blood pressure or hypotension can be observed in crush injuries or systemic results of a lower extremity fracture. any acute change in level of alertness that progressively deteriorates is a medical emergency. often, regular vital signs and neurological checks (typically up to hours post-fall or more) can detect these events. observation of the integument can point to skin tears, new and old bruises, and the potential for underlying muscular strain or fracture. signs of head trauma may be as vague as a mild headache of new onset, changes in vital signs, or neurological decline. nurse’s observation and perception of the resident the nurses’ perception that a fall event poten- tially occurred is as valuable as any other infor- mation. daily observations of the resident allow for the nurse to accrue information incremen- tally about changes in function. gradual deteri- oration, for instance, can be surmised when the nurse reflects back on previous types of func- tion or behavior. knowledge gained assists in an overall real-time perception of the resident’s current status. when these observations yield a high degree of suspicion for a fall, it is vital not only to evaluate the resident thoroughly, but also to consider interventions that will promote patient safety. injury prevention strategies that are initiated for protective reasons range from geriatric nursing, volume , number padded and elevated side rails to use of hip pro- tectors, low-rise beds, or bed alarms. great variability exists in the type of intervention cho- sen; selection is typically based on the specific needs of the resident and facility resources. conclusion overall, the post-fall assessment of the older adult with dementia and impaired executive function translates to greater use of the nurse’s observation of the resident for subtle or dramat- ic changes in function and behavior. the vital signs, assessment of integument, cardiovascular, respiratory, and neurological systems remain unchanged as the standard components of a post-fall assessment. the mmse and its clock- drawing components have special value in iden- tifying visuospatial impairment along with loss of higher cortical function that may explain why the fall occurred in the first place. if the workup of the fall etiology is uneventful, the clinician should consider assessment using the clock- drawing test and mmse to identify root causes associated with visuospatial impairment that may be the underlying diagnosis of dementia. references . roman g. diagnosis of vascular dementia and alz- heimer’s disease. int j clin pract suppl (may); : - . . estol cj. dementia: clinic and diagnosis. vertex ; ( ): - . . cosentino s, jefferson a, chute dl, et al. clock draw- ing errors in dementia: neuropsychological and neu- roanatomical considerations. cognitive behavioral neurology , jun ( ): - . . elzen h, schmidt i, bouma a. the diagnostic value of drawing a clock in geriatrics. tijdschr gerontology geriatric ; june ( ): - . . kalman j, magloczky e, janka z. . disturbed visuo-spatical orientation in the early states of alzheimer’s disease. arch geronoltogical geriatric , ( ): - . . yammamoto s, mogi n, umegaki h, et al. the clock drawing test as a valid screening method for mild cog- nitive impairment. dementia geriatrics cognitive disorders ; ( ): - . deanna gray miceli, dnsc, aprn, faanp, is a board certified gerontological nurse practitioner with expertise in falls. she is a post-doctoral scholar ( - ) of the john a. hartford foundation building academic geriatric nursing capacity program at the university of pennsylvania-school of nursing, adjunct assistant pro- fessor, university of pennsylvania and nurse practition- er/falls consultant, the new jersey department of health and human services, trenton, new jersey. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . in the lives of persons with cognitive impair- ments, a time comes when it is necessary to give up driving. this may be a particularly difficult issue for the driver, his or her fami- ly members, and their health care profes- sionals. in this study, the phenomenon of unsafe driving by cognitively impaired older adults and the process of affecting driving cessation, was explored through guided interviews with persons throughout the state of florida. participants included pro- fessionals working in the aging network, mobility counselors, safety officers, individ- uals with a mild degree of cognitive impair- ment and their family members. the strate- gies employed to influence or effect cessation could be categorized as those that involved the individual affected and those that were imposed on the individual. conditions that appeared to influence whether driving cessation would occur were observed. there were distinct pros and cons to each strategy. in this article, specific information is provided to guide nurses working with cognitively impaired people who have become unsafe drivers. it is expected that driving cessation can be voluntarily effected in many cases but may have to be imposed in others. the skilled nurse will know when and which type of recommendation is appropriate. (geriatr nurs ; : - ) t he acquisition of a driver’s license is a critical developmental task associated with achieving adulthood in the united states. it symbolizes independence and confers a certain social status on the driver and owner of a vehicle. the ability to drive permits indi- viduals not only to meet basic needs more easi- ly in most locales (for shopping, seeking health care, and travel to places of employment) but also permits connection with the community by facilitating attendance at religious, social, sporting, or entertainment events, and visiting with friends and family, thus preventing social isolation. - as a result, having to relinquish one’s driver license often causes much distress to the older driver and, consequently, to his or her family as well. - on the other hand, , people aged and older died from motor vehicle crashes in a sin- gle year. older drivers are more likely to die as the result of injuries associated with a motor vehicle accident. when calculated on the basis of estimated annual travel, the fatality rate for drivers aged and over is times greater than the rate for drivers aged through years. based on current rates, the numbers of traffic fatalities involving older drivers will more than triple by . , many older people continue to drive even though they may not be able to do so safely. a substantial proportion of their driving problems are associated with the disease processes that increase with advancing age and diminish the skills needed to drive. for example, older per- sons are more likely to be taking medications, many of which can affect driving ability. of particular concern are changes involving visual, perceptual, cognitive, and motor skills. , although individuals with mild dementia actually have fewer accidents per year than young people ( – years), as dementia pro- gresses, it becomes an important risk factor for motor vehicle accidents. cognitive changes, especially visuospatial, agnosic, apraxic, and attention deficits, have been implicated in unsafe driving. some individuals with demen- tia appear to either lack insight or deny any decline in driving competence, often deciding to stop driving only after one or more accidents have occurred. freund and szinovacz found that more than half of those with mild cognitive kathleen jett, phd, aprn, gnp, bc, ruth m. tappen, edd, rn, faan, and monica rosselli, phd imposed versus involved: different strategies to effect driving cessation in cognitively impaired older adults geriatric nursing, volume , number geriatric nursing, volume , number impairment continue to drive. almost % of the men and % of the women with severe impairment continued to drive long distances. not surprisingly, the lack of an alternative driv- er was found to be a significant factor in the continuation of driving for both men and women. those who do not drive or who must stop driving have to depend on public trans- portation, walking, the favors of friends or rela- tives, or hiring someone to drive them. these alternatives are often inadequate, increasing reluctance to cease driving. although the effects of driving cessation and some of the salient factors (e.g., gender, driving partner, metropolitan residence) that influence driving cessation have been explored, the process of arriving at that outcome has not been articulat- ed. the purpose of this study was to identify and describe the strategies health and social service professionals, paraprofessionals, older persons and their families find to be effective and ineffec- tive in bringing about driving cessation. methods participants we recruited persons from across the state of florida to participate in a guided interview related to driving cessation in older adults with cognitive problems (table ). participants were selected on the basis of their personal or profes- sional experience dealing with this issue. they included professionals working in memory dis- order clinics, alzheimer’s association chapter staff, mobility counselors, safety officers, older drivers, and laypersons who attended support groups for people with a mild degree of cognitive impairment and their family members. data analysis participant responses were hand written dur- ing the interviews and later transcribed. the data were subjected to concurrent analysis using a grounded theory strategy. as themes emerged in the early stages of data collection, they were discussed with later participants and among the investigators to refine and revise the thematic structure. when saturation was reached, the investiga- tors separately read and reread the transcripts, and then came together to compare and recon- cile the thematic structures identified. the results were further refined, and the themes were again reviewed for coherence and consis- tency. finally, the themes were reviewed with selected key informants for purposes of estab- lishing validity of the findings. results the phenomena under study were those of unsafe driving and driving cessation related to cognitive impairment. the themes identified relat- ed to the context of unsafe driving, the interven- ing conditions that affected cessation and action and intervention strategies employed to effectu- ate cessation of unsafe driving. the analysis has implications for counseling cognitively impaired persons regarding driving cessation. interestingly, there was considerable concordance in the responses of the participants from various groups, that is, individuals with mild cognitive impairment and their family members vis-à-vis professionals. where substantive differences arose, these are noted and the reasons discussed. unsafe driving potentially unsafe driving was observed by the participants in the presence of topographic agnosia, apraxia, or attention deficits (table ). impaired drivers got lost coming or going to familiar places (topographic agnosia), had impaired ability to use car equipment correctly table . types and gender of respondents (n = ) category of respondent men women older drivers family members paraprofessionals/ professionals in aging persons who are both family members and work in the field of aging total participant age ranged from ~ to years. geriatric nursing, volume , number (apraxia), and had decreased awareness of other cars, pedestrians, and so on (attention deficits). people spoke of such things as the failure to identify the brake and gas pedals cor- rectly, crossing lines of traffic without realizing it, and driving with the car door open. unsafe driving was described as occurring most often under certain conditions (table ). it was reported that people with cognitive impairment would often continue to drive if one or more of the following were present: the indi- vidual had a strong desire or need to drive, the individual had access to a car, the lack of an alternate driver, and alternative transportation that was not available, difficult to use, or of unacceptable nature (e.g., rowdy adolescents encountered on public buses). driving was also particularly likely to occur in the company of a “copilot,” or someone avail- able in the car who could direct, instruct, and supervise. a number of the women interviewed preferred to act as a copilot to their impaired husbands rather than to assume the responsi- bility of driving. intervening conditions intervening conditions are those factors believed to influence the continuance of unsafe driving or the cessation of driving. the condi- tions reported included the visibility of the driv- ing deficits; available economic resources; the relationship the driver had with family mem- bers, health care providers, and law enforce- ment personnel; and the meaning the driver attached to his or her vehicle and driving. the visibility of specific driving impairments was a particularly important intervening condi- tion. for example, a daughter reported that she had not known her father was having difficul- ties until she visited him and was a passenger in the car. her father asked her which pedal was for gas. stunned, she refused to stay in the car if he continued to drive. in another case, a son never knew his father was a dangerous driver because he automatically assumed the role of the driver during his visits and thus his father’s deficits remained invisible. actions and intervention strategies two different—and in many respects con- flicting—strategies to achieving driving cessa- tion were espoused by the respondents (table ). an involved strategy is based on open com- munication and inclusion of the cognitively impaired person in the decision to stop driving. an imposed strategy, in contrast, uses direct action to prevent the cognitively impaired per- son from driving without discussion or partici- pation in making the decision. few, if any, cog- nitively impaired respondents supported the imposed strategy, whereas a significant minori- ty of family members and professionals did, providing examples and arguments in favor of its efficacy and, at times, necessity. involved strategy. an involved strategy is based on the principle that the cognitively impaired person is an adult who has the right to be included in decisions affecting his or her life. it is further argued that the person who under- stands the reasons for stopping will, in most cases, agree that it is necessary to stop driving. table . conditions indicating high risk for unsafe driving (relating to cognition) • topographic agnosia (e.g., getting lost going to or from common places) • apraxia (e.g., loss of ability to use care equipment correctly such as key, brake pedal, etc.) • attention deficits (e.g., decreased aware- ness of other cars, pedestrians, stationary objects or condition of the car) table . conditions that increase the likelihood of unsafe driving • desire to drive • need to drive (no alternatives available or acceptable) • access to a vehicle • willing copilot geriatric nursing, volume , number combining suggestions from a variety of respondents, including people with a mild degree of cognitive impairment, the involved strategy would begin with discussion of the eventual need to stop driving, preferably long before it becomes a critical safety issue. any dis- cussion of driving errors should be specific, not global. “you went through that stop sign” is con- sidered preferable to “you never pay attention to what you are doing.” a calm, empathetic shar- ing of views is thought to be more likely to occur under this scenario than if the subject is brought up during an argument or when an accident or near accident has occurred. acknowledging the losses incurred when one stops driving is con- sidered important. equally important is the cre- ation of a realistic, affordable, and acceptable plan for alternative transportation. a number of respondents raised an interest- ing point about convincing the cognitively impaired person that it has become dangerous to drive. danger to oneself, many reported, is not persuasive to a cognitively impaired older adult. danger to others, especially a beloved grandchild, neighbor’s child or even a pet, was reported to be far more persuasive. a somewhat different but nevertheless involved tactic is to point out the legal and eco- nomic ramifications of having an accident, par- ticularly after the person has been advised to stop or had the driver’s license revoked. the dan- ger of losing one’s savings in the resulting law- suit can be persuasive to some. others may be persuaded by an analysis of the cost of owning, maintaining, and insuring a car compared with paying someone to drive or using a taxi service. the involved strategy is time-consuming, and its effectiveness is uncertain, particularly with more advanced impairment. on the other hand, it helps to maintain relationships and demon- strates respect for the individual with cognitive limitations. imposed. use of the imposed strategy is based on several arguments. the first is that cogni- tively impaired persons are either unwilling or unable to make a wise decision, so the family member or professional must do it for them. the second major argument is that the safety of the cognitively impaired driver and anyone in the vicinity of this driver is in jeopardy and that safety considerations supercede any other considerations. the third is that this strategy works. one or more respondents mentioned a num- ber of strategies that fall within the imposed category: • keep the car out of sight and put the keys in a new place where they are not easily found. • tell a “therapeutic fib” that the car won’t work, the keys are lost, or the insurance was cancelled. • disable the car or put an antitheft device on the steering wheel to lock it. table . action strategies used to bring about driving cessation action strategies imposed type involved type report person to division of motor vehicles for all family members and individual meet, discuss possible license suspension the situation, and come to a mutual agreement of the problem use of deception or threats such as false keys, dialogue is ongoing from the earliest signs of disabling the car, saying car was stolen cognitive impairment of the eventuality of the need to stop driving attempts to order or control such as provider arrangements are made for alternative trans- writing a prescription, commands from portation plans that are available when needed children to stop driving and acceptable to the individual geriatric nursing, volume , number • sell the car or give it away. • report the person to the division of motor vehicles pursuant to having that license revoked. (it was noted that this is not as cer- tain a solution as it would first appear because some people drive without a license.) on one hand, the imposed strategy includes a number of strategies that may be highly effec- tive and quick to accomplish. on the other hand, imposed strategies may be considered dehumanizing and have the potential to under- mine trust and damage the relationship between the cognitively impaired person, his or her family, and professionals involved in caring for the impaired person. health care providers who use the imposed strategy may be “fired” by the patient, and family members may be the tar- get of much displeasure if not anger, but driving cessation is usually achieved. discussion the participants in this study described spe- cific safety concerns regarding people who have cognitive impairment continuing to drive. these areas of concern were consistent with the liter- ature: getting lost coming or going to familiar places, inability to use car equipment correctly, and decreased awareness of other cars, pedes- trians, and so on. once these factors become apparent, intervention was deemed necessary. many cognitively impaired adults voluntarily stop driving when the potential dangers become apparent to them (table ). some are frightened by an incident that occurred while driving; others are happy to have someone else table . factors that positively influence the success of driving cessation counseling interventions • visibility of the impaired driving skills • the occurrence of recent accidents or “near misses” • positive relationships with family member and health care provider • individual is female • there are acceptable options for trans- portation alternatives table . sources of information about driving testing locations • local department of motor vehicles • state department of transportation • area agencies on aging • senior help lines • national safety council • national highway transportation safety administration (www.nhtsa.dot.gov) • health care facilities with outpatient occu- pational therapy services most driving testing is for persons with physical challenges. it is important that this testing is specifically designed for persons with cognitive limitations. table . factors to consider in the development of an alternative transportation plan • specific information about transportation needs (e.g. distance, frequency of reoccur- ring needs such as trips to church) • specific costs of current transportation (e.g., insurance, gas, maintenance, pay- ments) • meaning that independent transportation and vehicle(s) holds for driver • pros and cons of each form of alternative transportation available and suitability for the persons with a cognitive impairment • level of cognitive impairment http://www.nhtsa.dot.gov geriatric nursing, volume , number drive. in either instance, they stop with little or no argument. naturally, these individuals are less likely to come to the attention of profes- sionals than are those who resist. among people reluctant to give up driving, driving cessation is more problematic. because dementia affects the quality of decision making, multiple judgment issues arise. dementia patients may have reduced insight about their own capabilities and try to do things that they are not capable of doing, including driving. professional intervention, through counseling the driver and significant others, may be neces- sary. counseling can prepare family members for the expected course of disease and increase the caregivers’ ability to cope. the reality of the unsafe driving must be made visible to both the driver and the family. this may occur through simple observation or through driver testing, preferably testing that is specific to persons with cognitive impairment (table ). once unsafe driving is made apparent, health care professionals and others in the aging net- work have a responsibility to provide the cogni- tively impaired person and his or her family with a range of options and informed strategies for effecting cessation. measures to influence the context of driving and the intervening condi- tions—for example, reducing the need for driving and developing reasonable and acceptable alter- natives to driving (table )—may be fruitful. involving the impaired driver in the process from the beginning would be the preferred strategy from a humanistic point of view, but the potential necessity of the imposed strategy is recognized. as the number of older persons and, therefore, older drivers with cognitive impairment increases, so does the need to implement an effective yet car- ing strategy to bring about driving cessation. this article presents information that should be of use to nurses dealing with driving cessation for a per- son with cognitive impairment. by incorporating the information presented, the intervention may be affirming whenever possible but may become directive when necessary. further research is needed to test the effectiveness of these interven- tions on drivers with cognitive impairment. references . burkhardt j, berger a, creedon m, et al. mobility and independence: changes for older drivers. developed under cooperative agreement with us department of health and human services. . available at the administration of aging web site: www.aoa.dhhs.gov. accessed march , . . carr d. the older adult driver. am fam physician ; : - , . . johnson e. transportation mobility and older drivers. j gerontol nurs ; : - . . foley d, masaki k, ross w, et al. driving cessation in older men with incident dementia. j am geriatr soc ; : - . . freund b, szinovacz m. effects of cognition on driv- ing involvement among the oldest old: variations be gender and alternative transportation opportunities. gerontologist ; : - . . taylor b, tripodes s. the effects of driving cessation on the elderly with dementia and their caregivers. accident anal prev ; : - . . family and friends concerned about an older driver; final report. dot - . august . available at: www.nhtsa.dot.gov/people/injury/olddrive/ familynfriends/faf_index.htm. accessed march , . . carr d, duchek j, morris j. characteristics of motor vehicle crashes of drivers with dementia of the alzheimer’s type. j am geriatr soc ; : - . . ham r. sloane p, warshaw g. primary care geriatrics: a case based approach. th ed. st. louis, mo: mosby; . . messinger-rapport b, rader e. high risk on the high- way: how to identify and treat the impaired older driv- er. geriatrics ; : - . . drachman da, swearer jm. driving and alzheimer’s disease: the risk of crashes. neurology ; : - . . rees j, bayer a, phillips g. assessment and management of the demented driver. j ment health ; : - . . kapust lr, weintraub s. to drive or not to drive: pre- liminary results from the road testing of patients with dementia. j geriatr psychiatry neurol ; : - . . strauss a, corbin j. the basics of qualitative research. newbury park: sage; . . mendez mf, cummings jl. dementia: a clinical approach. philadelphia: butterworth heinemann; . . brodaty h, mcgilchrist d, harris l, et al. time until institutionalization and death in patients with demen- tia: role of caregiver training and risk factors. arch neurol ; : - . kathleen jett, phd, aprn, gnp, bc, is assistant pro- fessor and ruth m. tappen, edd, rn, faan, is a christine e. lynn eminent scholar and professor, both at florida atlantic university, christine e. lynn college of nursing; monica rosselli, phd, is associate professor, department of psychology, florida atlantic university, college of science, boca raton, florida. acknowledgment supported by a grant from the florida department of transportation, grant cp- - - driving cessation: counseling the cognitively impaired older driver and family. principal investigator: sidney breman; project director: ruth m. tappen, edd, rn, faan. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . http://www.nhtsa.dot.gov/people/injury/olddrive/familynfriends/faf_index.htm http://www.nhtsa.dot.gov/people/injury/olddrive/familynfriends/faf_index.htm http://www.aoa.dhhs.gov vascular dementia is the second most prevalent type of dementia in the united states today. this article includes a review of its pathophysiology, which involves the damage of small vessels in the brain, an abundance of which are in the subcortical region, thus creating a subcategory called when the risk factors are managed. this article reviews the physiology of the brain, outlines the pathophysiology of svd, compares alzheimer’s dementia (ad) with svd, and differentiates svd from depression. finally, evidenced-based interventions are discussed. background an interactive mass of neurons formation from within and y, processing this information, responses back through our ctions. damage to brain tissue ugh a variety of mechanisms, entia and estimated to cost the illion annually. dementia is mings as impairment “in out domains”: personality, memory, kills, language, and cognition, problem solving and mathemat- s. of those people over age severe dementia, and % have te dementia. , gy in tissues become damaged and sets in is through atherosclero- ning and hardening of the arter- risk factors that accelerate ath- the arterioles are hypertension etes mellitus (dm). within the r lumen arterioles lack the elas- larger arteries possess, making ceptible to damage by athero- e vessel walls thicken and stiff- radually narrows and the vessel lly creating conditions: hypo- clusion. hypoperfusion slowly nd nutrients to brain tissue. enly halts the blood supply to a ion of tissue. both result in tissue. brain where arterioles are most n the subcortical region, at the connects to the frontal lobe. donna fladd, npp, rn subcortical vascular dementia subcortical vascular dementia (svd). vari- ous diseases, such as diabetes and high blood pressure, predispose the individual to damage to these small vessels. the symp- toms of svd are included as a review and helpful outline to differentiate svd from alzheimer’s dementia and depression. additionally, evidence-based interventions are reviewed. nurses play a unique role in preventing and minimizing this dementia, which afflicts such a large percentage of our elderly population. (geriatr nurs ; : - ) w hen an elderly patient presents to a visiting home nurse, psychiatric nurse, or a nurse working in a medical clinic, it is important to recognize that there may be other health problems that mimic depressive- like symptoms. one of these conditions is sub- cortical vascular dementia (svd). vascular dementia is the second most prevalent demen- tia in the united states. - in the early stages, the presentation is subtle and can be mistaken for depression. oftentimes, months and even years go by with the patient trying expensive but ineffective treatment, which is frustrating to all involved. as nurses, we are patient advo- cates when we have a good knowledge base. with this base internalized, we can critically analyze the data, determine whether interven- tions are working, and provide feedback to the primary care provider. nurse practitioners can determine whether there is a need for further diagnostic workup to rule out underlying med- ical conditions, such as svd, and adjust the course of treatment accordingly. cognitive decline from svd can be slowed and stabilized the brain is conducting in around the bod and relaying thoughts and a can occur thro resulting in dem nation $ b defined by cum of behavioral visual-spatial s which includes ical calculation years, % have mild to modera pathophysiolo one way bra that dementia sis—the thicke ies. the main erosclerosis of (htn) and diab brain the smalle ticity that the them more sus sclerosis. as th en, the lumen g twists, eventua perfusion or oc cuts oxygen a occlusion sudd particular reg ischemic brain areas in the abundant are i point where it geriatric nursing, volume , number geriatric nursing, volume , number therefore, vascular damage most likely occurs in the subcortical-frontal lobe areas of the brain. , with enough damage, dementia emerges with behavioral changes that correlate to the region of the brain where there is ischemia. with subcortical vascular dementia, changes may be sudden or gradual and then progress in a stepwise manner. although nor- mal intelligence is maintained, behavioral changes may be seen, including a change in or impairment of a person’s sense of social judg- ment, speech and language patterns, and prob- lem-solving ability. motor slowing, blunting of emotion, and lack of initiation are or can also be seen because the motor circuit is damaged between the basal ganglion and frontal cor- tex. , these changes give the person the appearance of being depressed. populations in which subcortical vascular dementia is seen with the most frequency are in those where hypertension and diabetes mellitus are more prevalent. these populations include african americans and japanese americans. identifying svd “the main feature [that differentiates] sub- cortical dementia . . . from other dementias is psychomotor slowness.” straub and black note that a quick clinical test developed by power and colleagues assesses cognitive slow- ing by asking the patient to write the alphabet in uppercase letters. the normal range in this timed test is less than seconds. longer then seconds indicates cognitive slowing, as in a patient with svd. further diagnostic workups can then be justified to determine the appropri- ate diagnoses and treatment. various workup interventions and blood tests can be gathered to rule out other illnesses and support dementia diagnoses. magnetic res- onance imaging (mri) is the most definitive diagnostic tool. a retinal examination can also reveal arteriole damage. observation of arteri- ole damage could be the wake-up call to reeval- uated diabetes and hypertension management. chui noted that a benefit of knowing whether there is hypoperfusion of the brain tissue is to manage the blood pressure accordingly, that is, not to bring it too low so as to exacerbate ischemia through hypoperfusion. chui sug- gested systolic blood pressure remain in the range of to mm hg. another important factor to consider with an accurate diagnosis of svd is that whereas ad is progressive, svd can be slowed and stabilized by managing risk factors. differentiating svd from ad alzheimer’s dementia (ad) is the most com- mon type of dementia in the united states, affecting – million people. ad is a progres- sive degeneration of the cerebral cortex neu- rons, where memories are stored. the cortex is also where the ability to learn new things, abstract thinking, and visual-spatial under- standing takes place. with progressive cortex deterioration, knowledge of the most basic skills ebbs, resulting in progressive amnesia, loss of meaning in speech, impairment in visu- ally understanding the world, and an inability to think abstractly. refer to table for a sum- mary of the presentation of svd and ad and applied mental status examination techniques that the clinician can perform to assess various cognitive functions. in many cases, ad and svd occur simultaneously. differentiating svd from depression when it comes to assessing whether an eld- erly patient has depression or dementia, sever- al considerations need to be addressed, sum- marized from straub and black. first, a history must be obtained by interviewing the patient and those people who know the person best. determining whether there is a history of depression or psychiatric problems, including alcohol or drug abuse, is helpful. second, it is important to find out the onset and course of cognitive decline. with dementia there is usual- ly a long delay between the onset of symptoms and seeking help. suspect depression if the onset of cognitive decline is sudden and if social stresses precipitate decline in function- ing. next, evaluate whether the cognitive exam results are consistent and valid. the depressed elderly patient may provide inconsistent results because his or her cooperation and concentration may wax and wane. anything that requires mental energy will be difficult for the depressed patient. on the other hand, the person with dementia will present as willing to attempt the cognitive examination. the depressed patient may also complain about poor cognitive decline, whereas the person with dementia is unaware of cognitive changes. sometimes the evening hours worsen dementia geriatric nursing, volume , number symptoms and will have no effect on the per- son with depression. refer to table for a summary of the differences between depres- sion and dementia. if health care providers determine that depression is present, treat- ment should proceed and improvement should be expected. evidence-based interventions evidence-based intervention (ebi) is a term used to classify the type of research that sup- ports interventions used in the medical commu- nity. the type of research is divided into class- es. class i describes research evidence from or more well-designed, randomized, controlled table . comparing and contrasting ad to svd using the mental status exam mental status alzheimer’s subcortical vascular exam test dementia dementia motor speed observe gait spastic hyperreflexia small steps attention rule out delirium test with digit normal normal repetition test psychomotor writing the alphabet in upper case normal slowed speed letters (normal < seconds) memory test memory with register and recall amnesia patchy retrieval defects speech observation aphasic, empty with dysarthric loss of meaning visual-spatial request a cube drawing from an poor occasional defects example executive multitask questions, math calculations, dysfunction with poor poor functioning and proverb interpretation insight adapted from lauterbach. for more information on the mental status examination, please refer to straub and black. table . differentiating between dementia and depression depression dementia inconsistent presentation usually an unchanging presentation complains of loss of cognitive functioning few complaints of any changes in cognition gives little effort on examination items struggles with tasks adapted from straub and black. geriatric nursing, volume , number clinical trials. class ii provides evidence based on or more well-designed clinical studies from case–control, cohort, and other less controlled studies. class iii describes evidence provided by expert opinion, nonrandomized historical controls or or more case reports. primary prevention, the most effective means to prevent or reduce svd, is demonstrated by several class i studies that show, that manage- ment of hypertension (htn) improves cogni- tive functioning and prevents dementia. - other noted studies include the use of antiplatelet medication as prevention of vascu- lar damage. secondary prevention describes treatments to prevent the recurrence of a vascular accident or minimize further cognitive decline. class i stud- ies include the management of htn as well as antiplatelet medications. other class i studies with rivastigmine tartrate and galantamine hydrobromide , show enhancing cholinergic functioning improves cognitive functioning or slows cognitive decline in people with vascular dementia. additional class i studies of donepezil hydrochloride showed cognitive improvement over placebo in people with vascular demen- tia. – finally, tertiary care or treating the symp- toms as best as possible, includes several studies in progress that include research on acetyl- cholinesterase inhibitors and ginkgo biloba. nursing management an important aspect of nursing management of svd is to facilitate prevention of htn and dm. paramount to prevention includes, but is not limited to, a good diet, at least hours of sleep, and regular exercise. health care providers who list these recommendations without inquiring about a patient’s lifestyle are not really providing information or education. as nurses, we are in a position to ask questions pertaining to lifestyle and listen to the patient who may describe barriers to basic health main- tenance. poverty, limited support systems, stressful life styles, and drug or alcohol abuse are but a few unhealthy situations and behav- iors that predispose a person to chronic health problems, including htn and dm. once a barri- er is identified, the nurse should be ready to provide appropriate information and encour- agement, supporting the patient to make changes. when htn and dm are diagnosed, the nurse may be the primary health care provider who runs educational groups, is asked medica- tion questions, and follows up with patients regarding lab results. summary this article presents a comprehensive review of svd and offers a clear outline to assist nurs- es in differentiating among patients with svd and those with ad or depression. research- based interventions are included to support nurses in providing effective patient and family education and treatment to prevent or minimize svd by managing htn and dm. conclusion knowledge of the various types of dementias becomes poignant when caring for patients who struggle to accomplish seemingly simple activities. this underscores the importance of primary prevention through education and reg- ular health checks for diabetes and hyperten- sion. as nurses, we are the main providers of such multifaceted care and can provide educa- tion and support for management of dm and htn. the long-term consequences are too criti- cal to ignore. tools for early detection of vessel damage are sorely lacking, and more research in this area is needed. perhaps in the future, mri dementia screening will become as routine as mammograms and prostate screening. tools designed to collect information to assess changes in a patient should also include ques- tions for significant others. likewise, further research is needed to determine whether poor glycemic control of dm contributes to the pre- vention of cognitive decline. references . cummings jl. vascular subcortical dementias: clinical aspects. dementia ; : - . . cummings jl. neuropsychiatric aspects of alzheimer’s disease and other dementing illnesses. in: yudofsky sc, hales rh, editors. synopsis of neuropsychiatry. washington, dc: american psychiatric press; . p. - . . chui h. dementia due to subcortical ischemic vascu- lar disease. clin cornerstone ; : - . . hays jw, ernst rl. the economic costs of alzheimer’s disease. am j public health ; : - . . ineichen b. measuring the rising tide: how many dementia cases will there be in ? br j psychiatry ; : - . . jorm af, korten ae, henderson as. the prevalence of dementia: a quantitative integration of the litera- ture. acta psychiatr scand ; : - . geriatric nursing, volume , number . straub rl, black fw. the mental status examination in neurology. th ed. philadelphia: fa davis; . . levy ml, cummings jl. parkinson’s disease. in: lauterbach ec, editor. psychiatric management in neurological disease. washington dc: american psychiatric press; . p. - . . power c, selnes oa, grim ja, et al. hiv dementia scale: a rapid screening test. j acquir immune defic syndr hum retrovirol ; : - . . katzman r. alzheimer’s disease. new engl j med ; : - . . keltner nl, folks dg. psychotropic drugs. rd ed. st. louis, mo: mosby; . . lauterbach ec. psychiatric management principles in neurological disease. in: lauterbach ec, editor. psychiatric management in neurological disease. washington, dc: american psychiatric press; . p. - . . elias mf, d’agostino rb, elias pk, et al. neuropsychological test performance, cognitive func- tioning, blood pressure, and age: the framingham heart study. exp aging res ; : - . . launer lj, masaki k, petrovitch h, foley d, havik rj. the association between midlife blood pressure levels and late-life cognitive function. the honolulu-asia aging study. jama ; : - . . knopman d, boland ll, mosley t, et al. for the atherosclerosis risk in communities (aric) study investigators. cardiovascular risk factors and cogni- tive decline in middle-aged adults. neurology ; : - . . forette f, seux ml, staessen ja, et al. the prevention of dementia in randomised double-blind placebo-con- trolled systolic hypertensive in europe (syst-eur) trial. lancet ; : - . . meyer js, rogers rl, mcclintic k, et al. randomized clinical trial of the daily aspirin therapy in multi- infarct dementia. a pilot study. j am geriatr soc ; : - . . moretti r, torre p, antonello rm, et al. rivastigmine in subcortical vascular dementia: a randomized, con- trolled, open -month study in patients. am j alzheimers dis other demen ; : - . . erkinjuntti t, kurz a, gauthier s, et al. efficacy of galantamine in probable vascular dementia and alzheimer’s disease combined with cerebrovascular disease: a randomized trial. lancet ; : - . . wilkinson d, doody r, helme r, et al. donepezil study group. donepezil in vascular dementia: a ran- domized, placebo-controlled study. neurology ; : - . . black s, roman gc, geldmacher ds, et al. donepezil vascular dementia study group. efficacy and tol- erability of donepezil in vascular dementia: positive results of a -week, multicenter, international, ran- domized, placebo-controlled clinical trial. stroke ; : - . . perdomo c, pratt r. donepezil provides significant benefits in patients with vascular dementia [abstract]. j neuropsych clin neurosci ; : - . donna fladd, npp, rn, is a nurse practitioner and clinical nurse specialist in adult psychiatric nursing in upstate new york for finger lake health care and at the john d. kelly behavioral health outpatient psychiatric clinic in penn yan, new york. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . nationally, the older population is expected to double in numbers through the year . health care providers are challenged to develop new models of care delivery for this unique population. described in this article is one project that demonstrates suc- cessful outcomes for a community in east- ern north carolina. the model implement- ed community-based geriatric case management for frail elderly citizens resid- ing in a private home or in an assisted living facility. conventional hands-on delivery was combined with the distance-based conven- ience of telehealth. the outcomes prove this model to be cost-effective while improving quality of life for enrollees. (geriatr nurs ; : - ) a s the u.s. geriatric population continues to grow, utilization of health care resources will also continue at its increased rate among this population, com- pared with other age groups. this is particular- ly true for the frail elderly, aged and older, which is the fastest-growing segment of the eld- erly population. in north carolina, the number of people aged and older is expected to increase by more than % from and , which implies a demand on the health care sys- tem consistent with national projections. as of , pitt county’s elderly population had approximately , senior citizens, and pro- jections are that this will increase to , by . because of these projections, new mod- els of care must be undertaken to determine models for cost-effective delivery of care for this unique population while ensuring that the quality of care is not sacrificed. program overview in june , pitt county memorial hospital the pcmh and bsom geriatric clinic provided in-kind support. the purpose of the study was to investigate the effects of community-based case management for frail elderly residents of pitt county and what effect this would have on health care utilization among this population group. this new health care initiative had never been attempted in eastern north carolina. the clinical staff consisted of nurse case man- agers (ncm) and social-work case manager (swcm). one of the ncms was an advanced practice nurse and was board certified as a gerontological nurse; and the other was bsn- prepared with extensive rehab and community health experience. the swcm was masters-pre- pared and a licensed counselor. the program service provided a combination of traditional hands-on care by nurse and social-work case managers, as well as the technology of dis- tance-based health care utilized through a tele- health unit. this unit is approximately the size of a breadbox and allows regular physical assessments in the convenience of one’s home by providing two-way audio and visual inter- face, allowing the nurse to complete a compre- hensive physical assessment. it was proposed that this part of the case management model would allow earlier identification of health- related problems, an overall decrease in frag- mentation of health care delivery, and reduc- tion of health care costs for this population. program development and goals a steering committee was formed that includ- ed medical staff from the bsom geriatric clinic, pcmh staff, executive directors from local assisted living facilities, representatives from the local council on aging (regional ombudsman of the mideast commission on aging), legislative representatives, the pitt county department of social services, and the cheryl duke, rn, msn, fnp, aprn-bc the frail elderly community– based case management project geriatric nursing, volume , number (pcmh) and the brody school of medicine (bsom) at east carolina university geriatric clinic joined efforts to execute a -year study. the duke endowment funded the project, and eastern area health education center (ahec). through a collaborative effort, the following goals were created for the program: • establishment of a community-based med- geriatric nursing, volume , number ical case management program for resi- dents with symptoms of frailty • evaluation of home telehealth technology and outcomes in a population-based appli- cation • reduction of emergent visits to the hospital and physician’s office related to chronic disease as well as other health issues and a decrease in hospital admissions • increased understanding and acceptance of end-of-life options • establishment of a community-based edu- cational program for assisted living resi- dents, caregivers, and staff to learn about aging issues and prevention of frailty and other debilitating diseases and syndromes. the steering committee met on a quarterly basis throughout the -year grant period to pro- vide program oversight and assist with ongoing program development and evaluation. enrollment methodology and data collection after approval from the hospital internal review board was obtained, enrollment method- ology consisted of obtaining signed informed consent from the patient or his or her legal rep- resentative for case management services and telehealth services, as well as a consent waiver and release for images when pictures were obtained for educational use at various local and national presentations. to obtain objective base- line data, the nurse and social-work case man- agers developed comprehensive discipline-spe- cific assessment forms, which were administered to all enrollees. – the enrollment data also included administration of the folstein mini- mental state exam (mmse) and the modified geriatric depression scale (mdgs), which were administered at time of enrollment and annually thereafter. , a health care satisfaction survey was developed by one of the nurse case man- agers and administered at the time of enrollment and the completion of the project. those enrolled into the program were aged or older, resided in a private home or in of local assisted living communities in pitt county, and received their health care at the bsom geriatric clinic. the enrollees were identified by their primary care physician as those who would benefit from intense monitoring of chron- ic illnesses that could not be done through regu- lar clinic visits. on average, the enrollees had chronic diseases and took daily medications. the number enrolled totaled . during the week, whenever a case manager had contact with a patient, whether face-to- face, in a telehealth assessment, or by phone call, data were documented into a paperless electronic database, developed by a hospital data analyst. this comprehensive relational database was used to document, trend, and report clinical, social, and behavioral changes. cumulative data were compiled throughout the grant period to track outcomes. information such as type of visit, length of visit, cumulative number of visits, as well as all general and clin- ical information was collected in this database. other capabilities, such as when the next assessment was scheduled, could be stored and retrieved. the same clinical data was also com- municated, in a “cut and paste” fashion to the physicians in real time using an electronic med- ical record, called logician, which is used by all staff members at the bsom clinics. this time- effective communication allowed faster treat- ment for exacerbations of disease states, quick- er turnaround time on prescription refills, and kept the physician informed on a patients’ over- all status between regular clinic visits. program components depending on individual needs, interventions consisted of case management of medical and social conditions, telemedicine assessments for medically compromised patients, and utiliza- tion of hospice and promotion for acceptance of end-of-life decision making. on a monthly basis, the nurse case managers also provided education about specific health care issues for assisted living staff members and residents and their family members. – assisted living facili- ties in north carolina are required to provide continuing education for staff on an annual basis. the nurse case managers were able to help meet this need by facilitating monthly staff inservices on various subjects that could posi- tively impact the needs of the residents (table ). weekly patient care conferences were con- ducted at the geriatric clinic; the case man- agers, geriatricians, geriatric fellows, pharmacy and medical students, and the geriatric clinic support staff attended these. through a collab- orative effort between the primary care physi- cians, geriatric clinic and assisted living com- munity staff, and nurse and social-work case geriatric nursing, volume , number managers, this unique health care delivery model was successfully executed over a -year grant period. an overview of services provided by the model is as follows: • case management of medical and social conditions • telehealth assessments for medically com- promised patients • hospice use and acceptance for end-of-life care needs • education for the patient or resident, staff of the assisted living communities, and fam- ily members or primary caregivers about specific care needs and concerns outcomes because of the outcomes of this project, geriatric case management is now a permanent outreach community service for pitt county geriatric residents provided by pitt county memorial hospital. these services are now completely funded by pcmh with full-time nurse case managers at no cost to the client. it has been found to be financially worthwhile for pcmh to provide this service for community- dwelling seniors. it also provides a needed serv- ice to an identified elderly population known to be at risk for fragmented, costly health care. the total number of case-managed days was compared with the number of days before case management enrollment. this was done so that those who died or moved away could still be included in the outcomes data. the project demonstrated positive outcomes in all areas that were studied. the figures provide pre- and postenrollment cumulative outcomes, including emergency department visits (figure ), emer- gency department costs (figure ), hospital admissions (figure ), hospital admission costs (figure ), and total number of hospital days (figure ). it should also be noted that the aver- age mmse score declined over time, indicating a progressive deterioration of mental function- ing, but the mgds scores demonstrated an improved perception on quality of life. lessons learned during the execution of the grant, we discov- ered that telehealth was not always “user friendly” for people who had middle-stage alzheimer’s disease. at times, it caused unnec- essary frustration or agitation for the enrollee who had difficulty learning a new task, such as how to navigate correctly with the telehealth machine itself. training was provided to the assisted living staff, and when needed, they would assist those residents with functional limitations. after discussion with the case man- agers, facility staff, and dr. kenneth steinweg, the program medical director, it was decided not to implement telehealth as an assessment modality for those enrolled with moderate to severe alzheimer’s-type dementia. face-to- face assessments were provided for these indi- viduals, which proved to be the most appropri- ate assessment standard. one ideal example that demonstrates the pos- itive effects of telehealth was with a legally blind resident with stage iv heart failure. she was able to memorize by touch and sound which button to press while being assessed by the ncms and commented that telehealth was “better than indoor plumbing.” through the use of this technology, this resident was able to table . examples of education sessions provided to assisted living staff, residents, and family members fall prevention and gait instability dementia, depression, and delirium stroke prevention osteoporosis skin care and pressure sore prevention nutrition and hydration end-of-life issues pneumonia and influenza prevention diabetes polypharmacy constipation dental care geriatric nursing, volume , number reduce significantly her trips to the emergency department because of frequent heart failure exacerbations. in this particular case, the patient used telehealth to times a week. the ncms were able to perform a comprehensive cardiovascular assessment, including ausculta- tion of heart and lung sounds, obtain blood pressure and weight measures, and inspect lower extremities for degree of edema. , the ncms were also able to review with the patient and staff what the patient’s recent diet consist- ed of and provide guidance on strategies for reducing dietary sodium. depending on these assessment findings and contact with the physician through the logician database, the ncms would make a subsequent face-to-face visit to administer intravenous lasix when nec- essary. this intense monitoring prevented mul- tiple trips to the emergency department through early intervention and symptom man- agement. data from this project have been shared on the national level with the american geriatrics society and the national gerontological nursing associations, and the project was nominated for the judith braun clinical research award, as well as the local level for the east carolina university school of nursing and pitt county memorial hospital’s collaborative research day, an annual event. other benefits included monitoring the enrollees in their own environment and learn- ing individual idiosyncrasies. the case man- agers were also able to complement the knowl- figure . emergency department visits figure . emergency department costs geriatric nursing, volume , number figure . hospital length of stay (los) figure . hospital costs figure . hospital admissions geriatric nursing, volume , number edge base of the geriatric clinic staff by sharing significant information with them that is typi- cally not discovered in the clinic setting. over time, the staff at the assisted living facilities and the ncms developed a close working relation- ship, and when a question arose or a change in a resident’s status was discovered, many times it was the nurse case manager the staff would call first. this allowed quick assessment of the situation and frequently prevented a trip to the clinic or hospital. outcomes one year after the grant data from june to july demon- strate continued benefit in reducing hospital cost, length of stay, number of hospitalizations and trips for emergency care. the role of the ncms has changed. both ncm positions are now filled by bsn-prepared nurses. one of the ncms has been in her role since the implemen- tation of the grant and focuses completely on community-based needs, utilizing the model developed during the grant period. the other ncm has an inpatient focus and makes contact with every inpatient admitted, aged and older, and makes a phone follow-up after dis- charge to determine whether medical needs are being met. interestingly, the makeup of those case managed have changed since the grant ended. of those individuals case managed during that first year following the grant, are those who reside in a private home. during the grant period, the majority of the case-managed population resided in an assisted living facility. the change in population makeup may be an effect of staff education, which resulted in a greater knowledge base for the particular needs of this unique population. this occurred due to regular contact with the ncms, attending edu- cation sessions, assisting with telehealth assessments, and learning which findings indi- cated a problem. , they became more alert to significant changes and knew when to notify the health care provider before an exacerbation of a chronic illness occurred. overall, the out- comes are as follows: • % decrease in hospital admissions • % decrease in emergency room visits • % decrease in length of stay • % decrease in total hospital cost the frail elderly community–based case management project is a successful example of what can happen when a community pulls together various experts and resources for the benefit of the local geriatric population. with adequate funding, this model can and should be proactively duplicated by other communities. references . hobbs fb. the elderly population. u.s. census bureau, population division and housing and household economic statistics division. . available: http://www.census.gov/population/www/ pop-profile/elderpop.html. accessed march , . . north carolina state demographics. http:// demog.state.nc.us/. accessed march , . . north carolina division on aging. the baby boomers approach retirement. the growth of the older population in nc counties, to (prepared may ). http://ssw.unc.edu/cares/ boomproc/copo .htm. accessed march , . . abrams w, beers m, berkow r, eds. the merck manu- al of geriatrics. rahway, nj: merck laboratories; . . chenitz wc, stone jt, salisbury l. clinical geronto- logical nursing—a guide to advanced practice. philadelphia: w.b. saunders; . . hazzard w, blass j, ettinger w, et al. principles of geriatric medicine & gerontology. new york: mcgraw- hill; . . gershman k, mccullough, d. the little black book of geriatrics. cambridge: blackwell science; . . lueckenotte a. gerontologic nursing. st louis: mosby; . . ham r, sloane p. primary care geriatrics—a case based approach. st. louis: mosby; . . hamdy r, turnbull je, lancaster m. alzheimer’s dis- ease—a handbook for caregivers. st. louis: mosby; . . mace n, rabins p. the -hour day: a family guide to caring for persons with alzheimer’s disease, related dementing illnesses, and memory loss in later life. baltimore: john hopkins university press; . . miller c. nursing care of older adults—theory and practice. philadelphia: lippincott; . . sodeman w. instructions for geriatric patients. philadelphia: w.b. saunders; . cheryl duke, rn, msn, fnp, aprn-bc, is a nurse practitioner with the patient care services administra- tion of pitt county memorial hospital in greenville, north carolina. acknowledgment this project was funded through a grant from the duke endowment, and in-kind support was provided from pitt county memorial hospital and brody school of medicine division of geriatrics at east carolina university. the duke endowment provided $ , over a -year period to support the development and implementation of this project. - /$ - see front matter © elsevier inc. all rights reserved. doi: . /j.gerinurse. . . http://www.census.gov/population/www/pop-profile/elderpop.html http://www.census.gov/population/www/pop-profile/elderpop.html http://demog.state.nc.us/ http://demog.state.nc.us/ http://ssw.unc.edu/cares/boomproc/copo .htm http://ssw.unc.edu/cares/boomproc/copo .htm 	 - .pdf 	dementia treatment update 	deciding which drug to select 	how the drugs are evaluated 	applying research findings to practice: considerations 	references 	 - .pdf 	relationship of dementia and body weight 	obesity 	weight loss 	mechanism for the weight loss effect on dementia 	importance of monitoring weight 	intentional weight loss 	physical activity 	references 	 - .pdf 	dementia: complex care needing ongoing assessment 	 - .pdf 	incorporating medication regimen reviews into the interdisciplinary care planning process 	interdisciplinary teaming and effective medication regimen reviews 	just good practice 	outcomes in the context of holistic care 	turf issues and effective interdisciplinary teams 	barriers to interdisciplinary teaming in long-term care 	overcoming routines 	time constraints 	good interdisciplinary models 	conclusion 	references 	 .pdf 	pharmacology update: dementia 	 - .pdf 	gerontologic nurse practitioner care guidelines: dementia behaviors: recognition and management 	causes of dementia 	recognition of dementias 	behaviors common to dementias 	causes of behaviors 	management of behaviors 	medical management of behaviors 	references 	 - .pdf 	development of nurse competencies to improve dementia care 	development of competencies 	references 	 - .pdf 	falls associated with dementia: how can you tell? 	case analysis 	the clinical relevance of a diagnosis of dementia 	interview the resident 	interview potential witnesses-roomate, staff, and family 	review baseline behavior and function (static events) 	observe resident function and behavior for change (current-dynamic events) 	assess for pertinent signs or symptoms (current-dynamic events) 	nurse's observation and perception of the resident 	conclusion 	references 	 - .pdf 	imposed versus involved: different strategies to effect driving cessation in cognitively impaired older adults 	methods 	participants 	data analysis 	results 	unsafe driving 	intervening conditions 	actions and intervention strategies 	involved strategy 	imposed 	discussion 	references 	 - .pdf 	subcortical vascular dementia 	background 	pathophysiology 	identifying svd 	differentiating svd from ad 	differentiating svd from depression 	evidence-based interventions 	nursing management 	summary 	conclusion 	references 	 - .pdf 	the frail elderly community-based case management project 	program overview 	program development and goals 	enrollment methodology and data collection 	program components 	outcomes 	lessons learned 	outcomes one year after the grant 	references the use of non-pharmacological interventions for dementia behaviours in care homes: findings from four in-depth, ethnographic case studies. abstract background antipsychotic medications have been used to manage behavioural and psychological symptoms of dementia (bpsd). due to the potential risks associated with these medications for people with dementia, non-pharmacological interventions have been recommended as safer alternatives. however, it is unknown if, or how, these interventions are used in care homes to help people experiencing bpsd. aim to explore the use of non-pharmacological interventions in care homes to manage behavioural and psychological symptoms of dementia. methods in-depth, ethnographic case studies were conducted in care homes; in total they included interviews with care-home staff and hours of participant observations. findings non-pharmacological interventions, some of which are the focus of efficacy research, were used in care homes, but predominantly as activities to improve the quality of life of all residents and not identified by staff as meeting individual needs in order to prevent or manage specific behaviours. socially relevant activities such as offering a cup of tea were used to address behaviours in the moment. residents with high levels of need experienced barriers to inclusion in the activities. conclusions there is a gap between rhetoric and practice with most non-pharmacological interventions in care homes used as social activities rather than as targeted interventions. if non- pharmacological interventions are to become viable alternatives to antipsychotic medications in care homes further work is needed to embed them into usual care practices and routines. training for care-home staff could also enable residents with high needs to gain better access to suitable activities. key words: bpsd, dementia, care home, non-pharmacological intervention, activities introduction people with dementia living in care homes commonly experience episodes of distressing behavioural and psychological symptoms of dementia (bpsd) such as aggression, agitation, anxiety, sexual disinhibition, walking about and repeated questioning [ - ]. antipsychotic medications have been prescribed for people experiencing bpsd; yet these drugs can have limited efficacy [ - ] and have been found to be associated with serious adverse events such as stroke and death [ , - ]. concerned about the risk/benefit ratio, the department of health in england acted on a government-commissioned report [ ] and, in , pledged to reduce the use of antipsychotic medications for all people with dementia. there have been parallel efforts to reduce antipsychotic prescribing in nursing homes in the united states [ , ]. non-pharmacological interventions (npis), such as aromatherapy, multisensory stimulation, massage, animal therapy and music therapy, have been recommended by the national institute for health care and excellence (nice) as alternative first-line treatments for bpsd, with the use of antipsychotic medications as a last resort [ ]. non-pharmacological interventions can work to reduce bpsd in two ways; directly by targeting behaviours or indirectly by improving quality of life [ ]. care approaches, such as person-centred care [ , ] or seeking to identify and address unmet needs, can also be helpful in the prevention and management of bpsd [ , , ]. patel et al. [ ] argue that there should be a shift in the focus of npis, from managing bpsd, to improving well-being to reflect the distinct difference of npis from pharmacological interventions. however, the evidence base is weak with overviews of systematic reviews and systematic reviews assessing whether npis are effective for bpsd limited by poor quality studies, inconsistency across studies, small sample sizes, or very little evidence available [ - ]. there is some evidence for activities and music therapy [ ]. however, npis may need to be individually tailored [ ], can be costly to implement [ ], and are often time-consuming and reliant on the availability of knowledgeable staff [ ]. additionally, little is known about potential harms of npis [ ]. in view of the changing emphasis from antipsychotic medications to npis, this study investigates the use of npis to work with individuals experiencing bpsd on a day-to-day basis in care homes. the organisational factors in care settings have been found to influence care practices [ ] therefore care home contexts are important. examining how npis (some of which are the focus of efficacy research) are used to manage bpsd within care home environments is necessary to find out how current practices manifest within these organisational settings. methods four in-depth, ethnographic case studies were conducted in separate care homes. ethnographic case study methodology was chosen for this study because it is particularly suitable for examining complex practices in real life settings in which the researcher has little control, such as care homes [ , ]. in total, the case studies included: hours of observations; interviews with care-home staff, and the mapping of the administration of the psychotropic medications that some residents were prescribed. data collection continued until saturation was achieved in each home. this paper focuses on the care practices and use of npis and draws on the observations and interviews: the qualitative data. observations were conducted over a five- to six-week period in each home and covered weekdays, weekends, evenings and nights. the observations were overt and only took place in the shared spaces of the homes. the role of the researcher was ‘observer as participant’ [ ]. this meant the researcher (initials, a female phd researcher with years’ care work experience) was predominantly observing, but was able to help with small tasks within the homes such as assisting with activities, serving drinks and clearing tables in order to help develop rapport with residents and care staff. notes were written up as soon as possible after each observational period. one-off interviews with staff members took place at the care homes at times convenient to each interviewee. these were recorded and transcribed verbatim. the wider study, of which the case studies were part, was reviewed and given a favourable opinion by the social care research ethics committee prior to the commencement of the fieldwork. pseudonyms are used throughout this paper. sampling the results of a previous postal survey to care-home managers [ ] were used to select suitable homes to target for the purposive sampling of the case studies. all eligible survey responses were analysed and sorted (n= ) and those homes most likely to be caring for people experiencing bpsd were selected as potential sites (n= ). out of these , care home responses citing the most instances of difficult behaviours and/or npi use were prioritised to guide which homes to contact for participation. this was to increase the likelihood of gaining relevant findings. recruitment a letter about the study was sent out to care-home managers, with a follow up phone call made a week later with the aim of arranging a meeting to discuss the study. in total, care-home managers (from the eligible homes) were contacted; out of these, four agreed to a meeting and subsequently to have the researcher observing in their homes at different times over a - -week period and conducting a number of interviews (tables and ). of the six non-participating care homes, two declined to take part without reason, two stated they were not interested, one had no manager in place at the time and one stated they might be interested in the future. care-home staff working closely with residents experiencing bpsd were prioritised as potential participants, since they would encounter symptoms frequently. a mixture of managers, senior staff, care workers and activity staff were recruited as participants and interviewees at each site. purposive sampling was also employed to select residents. those experiencing numerous or persistent bpsd were identified by staff as potential participants, since it was hoped their symptoms would illuminate more staff strategies. although all residents encountered in the shared spaces of the homes were informed about the study, residents with bpsd were specifically sought to become participants. no data were written down or included about resident or staff non-participants, although since the researcher was in the homes over a long period of time friendly relationships developed with some people not formally participating in the study. staff members and care-home residents were informed about the study verbally and with participant information sheets. all participants consented individually to take part in the study. in line with the mental capacity act [ ], personal consultees were identified and contacted to provide advice about the participation of residents without sufficient mental capacity to consent. in total care-home staff, resident and consultees refused to participate in the research. analysis data were typed up, anonymised and stored securely. the framework approach [ ] was used to analyse the extensive qualitative dataset. this transparent approach has five phases: ‘familiarisation’ which involves immersion in the data to recognise key themes; ‘identifying a thematic framework’ which involves assembling ideas from the research questions and familiarisation stage into a framework; ‘indexing’ which involves the thematic framework (index) being applied methodically to the whole dataset; ‘charting’ which involves summarising the data under each thematic item in the framework with references to the source data, and finally ‘mapping and interpretation’ where associations, structures and patterns are identified and the dynamics and ranges of key themes or concepts examined. the analysis was primarily conducted by ‘initials’ with ‘initials’ also reading a subsection of the transcripts and notes and agreeing with the framework. disagreements were overcome through discussions, using a third author if necessary, until consensus was reached. themes, processes and interpretations were discussed, refined, and validated with all authors. results table shows a breakdown of the data collection from each case study. the analysis of the data generated aspects, which made up the framework. these were interpreted under main themes: care home dynamics; strategies and behaviours; and issues and tensions. this paper reports findings from the strategies and behaviours theme. we draw specific examples from the interview data, however the observational data corroborated all of the arguments presented. table shows the characteristics of the case study care homes. table : care home characteristics care home number care home type residential residential care home with nursing care home with nursing owner type (sector) voluntary independent voluntary independent registration dementia places/old age dementia elderly mentally infirm dementia/old age location city village town very rural number of residents residents reported to be prescribed antipsychotics* residents reported to be prescribed ‘as required’ antipsychotics* activity staff total hours activity worker/s employed per week . care staff on am shift** / / care staff on pm shift** care staff on night shift** *information from a postal survey prior to the case studies [ ] **includes carers and nurses/seniors on shift, but excludes management, activity, maintenance, office and domestic staff table : breakdown of data collection by care home case study data by care home (ch) data categories ch ch ch ch total weeks at the care home . . sessions at the care home interviews interviewees observation hours . . . . resident participants staff participants total participants the blurring between non-pharmacological interventions and activities table shows the wide variety of npis or activities which were found to be used in the four care homes. the observation data showed that activities were used in several ways. activities such as the television, newspapers and jigsaws usually occurred without staff contact. those such as massage, aromatherapy, reflexology, nail varnishing, helping staff with jobs and doll therapy occurred with individuals, although not necessarily those residents with high needs or those experiencing behaviours. activities such as exercise (games, skittles, quoits, dancing, and catch), reminiscence, cognitive stimulation (quizzes, bingo, dominoes and cards), music therapy, arts and crafts, entertainment and church services were provided as group activities. some activities such as walks outside, gardening or cooking were provided as either group or individual activities. external practitioners facilitated some pre-arranged specialist activities at the homes including: music therapy, exercises, aromatherapy massage, entertainment and pet therapy (the pat dog at ch ). however, activities at all four case study sites were predominantly orchestrated by activity staff who generally worked short, fixed hours. to a lesser extent care workers also coordinated activities; however, the interrupted nature of their work could hinder this. this division of labour meant that activities needing facilitation predominantly occurred during the time activity staff were at the homes. non-pharmacological interventions or activities such as those in table were generally not perceived, or used, by staff as interventions (ways to intervene, offset or mediate behaviours) to directly manage bpsd. rather than being tailored for specific individuals’ needs they were viewed by staff as activities for all residents at the case study care homes (even if they were individualised activities) in order to improve overall quality of life or well- being. as simon states: “it’s … about improving their stay here” (simon, activity worker, ch ) table : activities/npis observed at the case study care homes case study care homes (ch) ch ch ch ch television television television television arts and crafts arts and crafts arts and crafts arts and crafts walks outside walks outside walks outside walks outside newspapers gardening newspapers newspapers trips out bingo trips out trips out jigsaws jigsaws outside entertainment music therapy flower arranging music: cd music: cd music: cd reflexology quiz dominoes floor dominoes dominoes pat dog dominoes/cards games-quoits/skittles church service staff leaving party church service jubilee celebration gardening football/catch aromatherapy massage helping staff with jobs hand massage reading with residents helping staff with jobs read to residents exercises dancing aromatherapy massage church service nail varnishing nail varnishing olympic celebration halloween party cooking doll therapy nail varnishing bingo outside entertainment exercises cooking quiz/giant crossword reminiscence games-skittles/catch holiday reminiscence behavioural therapy* multisensory bath catch *not used with a resident experiencing bpsd when the majority of activities or npis occurred they were typically pre-arranged rather than responsive to a perceived need in order to prevent or to de-escalate a resident experiencing bpsd. karen talks about her daily routine here: “basically i do a group activity in the morning, which is for anyone to come even dementia … i do one-to-ones in the afternoon … start at room one … do about four or five ... and then just keep rotating” (karen, activity worker/senior care worker, ch ) although activity staff in three homes (all except ch , the care home with the least residents with dementia) stated that pre-organised activities were often not easy to adhere to, this was contrary to the majority of the case study observations, where it appeared that many of the larger activities (such as games, trips out and music therapy) were pre- arranged. a flexible approach was sometimes used to decide which activities to do in the moment; this appeared to reflect resident or staff choice and was not specifically driven by behaviour/s. individualised ‘activities’ observed to be targeted towards residents experiencing bpsd were: playing music from a compact disc (cd) (especially at ch and ch ), playing football with a resident, or taking a resident out for a walk. in these instances the activities were used spontaneously to de-escalate a resident from a specific agitated state. for instance, at ch the approach that hazel talks about here was observed: “i think it depends on the individual too … you’ve got to act very passive … and try to distract them from what is actually aggravating them ... okay let’s go for a walk or let’s go in the garden and play football” (hazel, general nurse, ch ) hazel speaks of trying to ‘distract’ residents with individualised interventions. this approach was used most of the time, by the majority of staff, as the primary strategy at each of the four care homes if a resident was starting to experience bpsd. teresa and eileen provide examples: “he starts the shaking and the heavy breathing and if i can distract him and get him watching a little dvd or just walking around the building with me … he forgets and he stops shaking” (teresa, activity worker, ch ) “i know it sounds the old cliché, but you try and sit them down with a cup of tea” (eileen, senior care worker, ch ) generally, staff members appeared to perceive what they termed as ‘distraction’ (through individualised interventions, which often also involved attention and conversation) as a successful strategy. offering a ‘cup of tea’ was a key intervention for bpsd used across the four sites. although most activities were not specifically targeted at the residents experiencing bpsd, they were perceived by care-home staff as being worthwhile. naomi talks of the general benefits of activities in care homes: “it’s stimulation isn’t it? it’s having something to do through the day … it’s like a bit of a circle isn’t it … if you’ve burnt some energy off then you’re going to sleep better through the night and just, it just always helps” (naomi, care worker, ch ) naomi reinforces the idea that activities were targeted at improving quality of life and mentions the benefits they can have on all residents, including those who experience bpsd. overall the data indicated that activities, although predominantly not targeted directly at managing bpsd, were perceived by staff to have a valuable role in care homes for all residents including those with dementia. barriers to including residents in activities barriers to including residents in activities could be either staff- or resident-led. the inclusion of residents with severe physical or mental difficulties or those experiencing bpsd in activities was avoided by some staff members. therefore, the residents experiencing bpsd, for whom npis are recommended as first-line treatments [ ] or those with greater physical or mental impairment, could perhaps have less access to these activities than residents with higher capacity and functioning. activity worker, jess, provides an example: “i feel awful saying this … it’s just very hard to actually get them to do, that they can physically do anything ... once they [care staff] did suggest maybe go and put a tambourine in their [the residents’] hand … i just found that must be patronising to be honest ... i didn’t feel comfortable doing that … i suppose i’ve kind of veered away from those residents um, because … it’s very hard to know activity wise what to do.” (jess, activity worker, ch ) jess’s acknowledgment that she ‘veered away’ from residents who had considerable physical or mental impairments due to being unsure about what she could do with them was not an isolated case. other activity staff also mentioned the difficulty in involving some residents. not knowing what to do to engage particular residents, avoiding those with bpsd due to feeling ‘uneasy’ around them and through fear of upsetting them, and staff perceptions that an activity appeared ‘babyish’ or condescending were reasons given as to why residents were left out by activity staff. care staff were not dissimilar in this avoidance: “it’s like outings … i don’t think they’re [care staff] willing to help out as much because they don’t want to help people with dementia. where they’re more willing to help people that … have got their full faculties ... so i think some dementia people do get, um, misunderstood and mistreated, um, not saying physically mistreated, or, i’m just like neglected with ... activities” (karen, activity worker/senior care worker, ch ) the excerpts from jess and karen highlight inequality in the delivery of activities. residents least able to engage in activities independently, and perhaps most in need of support, were as a result less likely to get that support. sometimes staff assumed that residents with cognitive or physical impairment or bpsd wanted or did not want to attend activities. this appeared to be a habitual screening, with those usually taking part assumed to want to attend and those not usually participating often no longer asked. at all four case study sites there appeared to be the same core of residents taking part in activities or attending events. staff appeared to be aware of this. “it’s normally the same people, the same little group” (holly, activity worker, ch ) teresa, an activity worker at ch , talked about the ‘favoured few’ residents who were always identified by staff to be included in activities. she made a conscious effort to spend time with those residents who she perceived as being more isolated, either through severe mental or physical disability or bpsd. similarly, barbara pointed out differences between those residents: “that are able to voice or ... can show their frustrations about not having something to do, whereas other people that are sitting in their chair might feel equally as bad, but can’t voice it or express it in any way” (barbara, general nurse, ch ) residents more obvious in their demands appeared to gain more input from activity staff (and in some situations care staff). the activities or interventions residents may be exposed to appeared to depend on how each person was perceived by staff. overall, the interview (and observation) data indicated some inequality in the allocation of activity provision, with specific residents (particularly those willing, able, undemanding and easily manageable) benefitting more than others (often those difficult to engage due to their physical or mental impairments or behaviours). some activity workers at the homes (except ch ) had dual roles as care workers, kitchen staff or laundry workers. at times of staff shortages the activity staff would often be reallocated to their other roles, meaning no activities occurred on those days. “a lot of people just see the activities side as a bolt-on” (susan, manager, ch ) this reflects another barrier to the use of npis, the prioritisation of fundamental tasks over activities and a view that activities are extras. many residents at the case study sites, except ch where limited group activities occurred, were reluctant to take part in or attend activities and would either decline to join in or leave the area as soon as one was being organised. this created a difficult issue for activity staff who appeared to believe that certain residents might gain some emotional benefit from the activity if they were to take part. the balance between encouragement and coercion to get residents to partake in activities was a difficult judgement for staff to make. holly, an activity worker, touches on the issue: “i have to try and get them … say ‘oh come on, do you want to do it?’ ‘no, no, no’ ‘come on’ but once they’re doing it they’re absolutely fine, it’s like when we done all the sunflowers … mable was going ‘oh i can’t do that, i can’t draw’ but … she absolutely loved it in the end” (holly, activity worker, ch ) holly suggests encouragement was worthwhile since it would sometimes get residents to take part and subsequently they would enjoy the activity. however, even after encouragement, there were a number who refused to take part in anything going on at the care homes. discussion our findings show that care-home staff are working hard to engage residents and improve their well-being. individualised interventions (such as, offering a cup of tea, taking the resident for a walk and chatting), viewed by staff as ‘distraction’ techniques, were used as first-line treatments for bpsd in the four case study care homes. non-pharmacological interventions, such as aromatherapy, music therapy or massage, were not being used as first-line treatments for bpsd in these four care homes. instead, in-line with the recommendation from patel et al. [ ], npis were predominantly viewed, and used, as activities and aimed at the whole group of residents of the home as a means to improve quality of life/well-being. in this way it is likely the activities could have contributed to a person-centred care approach [ , ], addressed unmet needs [ , , ], and improved the general psychosocial environment for all residents, all of which could have benefitted people with dementia and pre-empted instances of bpsd. activities such as those recommended as first-line treatments by nice (for example, individually tailored aromatherapy, massage, animal assisted therapy, multisensory stimulation, and music or dancing) [ ] did not appear to be identified by staff as key activities especially for use with those residents experiencing bpsd. this discrepancy could be due to a lack of knowledge about npis and their use for bpsd, limited available resources, a lack of evidence or guidance on which npi to use, or difficulties incorporating npis into practice for behaviours. our data highlighted some inequalities in the involvement of residents in activities, with residents difficult to engage due to their mental or physical impairments or behaviours less likely to be included. nice guidance [ ] recommends equal access to services regardless of diagnosis, so the inequality in the delivery of activities is a concern. the avoidance of including residents with high levels of need or behaviours could reflect a fear of doing the wrong thing, a lack of training about how to cope with behaviours that present difficulties for staff, especially in group settings or anxiety about the unpredictability of behaviours and the responsibility of managing them. whichever it may be, avoidance of these residents indicates that staff are aware that there is an issue. findings from this study portray the situations in four separate care homes and cannot be generalised. however, the in-depth nature of the case studies has led to the exploration of some current practices and has provided useful insights and transferable knowledge. throughout this paper we have focused on the voice of the care-home staff member to provide direct experiences of the participants, however the arguments portrayed also directly reflect the findings from the observational data. the researcher is an essential tool in ethnographic fieldwork, since they interpret everything they observe and hear. the researcher (initials) who conducted the data collection for this study has many years of paid care work experience with older people. this experience helped the researcher to cope with the emotional aspects of this work and enabled good rapport and trust to be built between the researcher and participants, which, we argue, enhanced the quality of the data. the perspective of the staff members has been prioritised in this study in order to answer the central research question of how they use npis to manage bpsd. conclusions important engagement work is happening in care homes to improve the general well-being of residents, which has the potential to prevent bpsd. additionally, situated, socially relevant activities (for example, offering cups of tea) are being employed to address bpsd in the moment. however, a gap seems to exist between rhetoric and practice, with npis predominantly being subsumed within group activities or open to all residents and not being viewed, or used, as individually tailored interventions for residents experiencing bpsd. furthermore, residents who might benefit the most from npis (those with greater cognitive or physical impairment or those experiencing bpsd) were often excluded, given that activities were generally provided for those residents with the highest mental capacity or functioning. there is a need for further empirical research to assess the outcomes of ‘distraction’ techniques, increased funding for activity staff in care homes, and some amelioration of the way npis are used in care homes. the role of care-home activity staff may need adapting to allow more flexible practice. training and guidance need to be provided, so activity staff have ideas and understanding about which activities to use and when for people with moderate to severe cognitive or physical impairments and for all care-home staff to have knowledge about the role npis could have in behaviour management. work also needs to take place to help alleviate the fear and uncertainty that exists so the avoidance of residents with greater cognitive or physical impairments or those experiencing bpsd is eliminated and more equality in the delivery of activities is created. finally, action is needed to aid the incorporation of npis into usual care practices, so they can be used in the moment with specific individuals as behaviours occur. key points  non-pharmacological interventions were predominantly being used as activities for all residents and not targeted at bpsd.  important engagement work by care staff was happening in care homes to improve the overall well-being of residents.  activities were generally provided to those with the highest functioning or capacity.  staff members’ lack of knowledge, confidence or training can inhibit the inclusion of residents with impairments in activities. acknowledgements the interest, acceptance and time given by the care-home managers, staff, residents and relatives is gratefully acknowledged. conflicts of interest none declared funding this article presents research from a phd study funded by the university of east anglia. the views expressed are those of the authors and not necessarily those of the university of east anglia. ethical statement this study was reviewed and given a favourable opinion by the social care research ethics committee (reference number: -iec - ). all participants consented individually to take part in the study. in line with the mental capacity act ( ), personal consultees were identified and contacted to provide advice about the participation of 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( ). person centred dementia care: making services better, london: jessica kingsley publications . livingston, g., kelly, l., lewis-holmes, e., baio, g., morris, s., patel, n., omar, rz., katona, c. & cooper, c. ( ) non-pharmacological interventions for agitation in dementia: systematic review of randomised controlled trials. the british journal of psychiatry. , - . . cohen-mansfield, j., thein, k., marx, m. s., dakheel-ali, m., & freedman, l. ( ). efficacy of nonpharmacologic interventions for agitation in advanced dementia: a randomized, placebo-controlled trial. journal of clinical psychiatry, ( ), - . . patel, b., perera, m., pendleton, j., richman, a. & majumdar, b. ( ). psychosocial interventions for dementia: from evidence to practice. advances in psychiatric treatment, ( ) - . . dickson, k., lafortune, l., kavanagh, j., thomas, j., mays, n. & erens, b. 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(eds.) analyzing qualitative data. new york: routledge. wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ book of abstracts th ipa international congress – october virtual learning https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/ . /s https://www.cambridge.org/core https://www.cambridge.org/core/terms gdc goes undercover to prosecute beautician a beagle is the face - and waggy tail - of a new service to help anxious patients in suffolk. six-year-old basil’s job is to provide patients with comfort and companionship, distracting them from their anxieties. s enior dental nurse jacci plant is the owner of basil the beagle and came up with the idea of offering pet therapy. she underwent training and now has the title of animal assisted practitioner. together, she and basil provide one to one therapy, meeting patients in the practice waiting area and then going into the appointment with them. said jacci: ‘i will be in the surgery with him and he will sit beside the chair, he’s quite a solid little chap so may be a bit heavy to sit on someone’s lap!’ ‘pet therapy is something i have always been interested in and i knew basil has the ideal laid-back temperament to make a fantastic therapy dog. i also knew that pet therapy worked well in other clinical settings or where people have additional needs such as mental health issues or learning disabilities.’ having basil as a therapy dog is a pilot scheme but jacci says there has already been a lot of interest when she has been in the dental practice. there are no cross infection control implications as a therapy pet has the same classification as a guide dog. jacci works with the community dental service community interest company (cds-cic) in suffolk. cds-cic, which operate eight clinics across the county, are starting a pilot of the pet therapy programme in selected locations and identifying patients who may benefit from being accompanied by basil during their treatments. amy schiller, operations director said: ‘we provide special care and paediatric dentistry and many of our patients, adults and children, have additional needs or severe dental anxiety and may require extensive treatment. reducing anxiety is very important and basil will be one technique we can use to help patients relax and feel more comfortable about having treatment. overall this is important, because with some patients it may make all the difference between being able to tolerate treatment without more invasive means such as sedation.’ a doggone good idea! gdc goes undercover to prosecute beautician a sussex woman, katie ensell, has been ordered to pay almost £ , by hastings magistrates’ court after being prosecuted and pleading guilty to offering illegal tooth whitening treatment through her business, kt’s cosmetics. the fine included £ for each of her two offences – unlawfully holding herself out as being prepared to practise dentistry and unlawfully carrying out the business of dentistry - and gdc costs of £ . . the general dental council (gdc) launched an investigation after a complaint about ms ensell was made in march last year. she told undercover investigators that she could provide them with tooth whitening using the hollywood whitening system. the gdc say that under the dentists act and following the high court’s ruling in gdc v jamous, the legal position in relation to tooth whitening is very clear. the treatment can only be performed by a dentist or a dental therapist, dental hygienist or a clinical dental technician working to the prescription of a dentist. katie spears, head of in-house appeals and criminal enforcement at the gdc said: ‘when we receive a report of illegal practice, we seek to educate those involved about the dangers and the law in relation to tooth whitening. where our efforts are ignored, as in the case of ms ensell, we will, where appropriate, prosecute in the criminal courts. © m as ha _t ac e/ is to ck /g et ty im ag es p lu s © br ue v/ is to ck /g et ty im ag es p lu s news bdj team www.nature.com/bdjteam © british dental association. all rights reserved. 	gdc goes undercover to prosecute beautician eco-social agriculture for social transformation and environmental sustainability: a case study of the upas-project sustainability article eco-social agriculture for social transformation and environmental sustainability: a case study of the upas-project sara nicli ,*, susanne ursula elsen ,* and armin bernhard faculty of science and technology, free university of bozen-bolzano, piazza università, - bolzano, italy faculty of education, free university of bozen-bolzano, via s. croce, - bressanone, italy; armin.bernhard@unibz.it * correspondence: sara.nicli@unibz.it (s.n.); susanne.elsen@unibz.it (s.u.e.); tel.: + - - - (s.u.e.) received: april ; accepted: july ; published: july ���������� ������� abstract: rural areas are facing vulnerabilities and changes caused by negative social, economic and ecological externalities resulting from industrial agriculture systems. locally embedded farms and bottom-linked approaches such as social cooperatives that act in the field of social agriculture are small, but valuable models to counteract these trends. this article is based on a case study conducted within the transdisciplinary research and development project unlocking the potential of social agriculture (upas), – —financed by the free university of bolzano. the main focus of the case study is to determine the impact of social agriculture initiatives on social and healthcare systems, the natural environment and the communities in which they act. data collection includes a literature review, observations and interviews carried out on case studies of social agriculture initiatives, mainly located in italy. the field research points out that actors in the sector of social agriculture predominantly aim to integrate disadvantaged people socially and in terms of their labor, base their production on organic methods, and that social agriculture has the potential to foster eco-social transformation and development of rural areas by the combination of social and ecological concerns. thus, we use the term “eco-social” agriculture to describe these approaches. furthermore, five components of eco-social agriculture have been defined, which, together, offer an ideal set of acting principles, namely: ( ) the empowerment and integration of disadvantaged people, ( ) the promotion of environmentally friendly agricultural practices, ( ) the protection of nature, resources and cultural landscape, ( ) support to the local community, and ( ) education for sustainable development. keywords: multifunctional agriculture; environmental conservation; green care; rural development; social cooperatives; sustainable agricultural systems . introduction while industrial agriculture systems are continuously expanding and increasing in their yield and productivity, this prevailing agricultural model [ ] pays insufficient attention to the negative ecological, social and health effects. worldwide, intensive agricultural practices are causing soil degradation, water pollution, overexploitation of natural resources, human and animal diseases, and the displacement and migration of rural populations. further dramatic consequences are the loss of traditional farming practices, indigenous knowledge and land abandonment [ ]. in addition to the negative impacts and the externalized social, cultural and ecological costs of intensive farming, the pressure on small producers and farms has increased. there is a constant decline of farms in europe, which mainly affects small farms with less than hectares. world market-oriented agribusinesses with a high dependency on external inputs such as synthetic fertilizers, pesticides and mechanization based sustainability , , ; doi: . /su www.mdpi.com/journal/sustainability http://www.mdpi.com/journal/sustainability http://www.mdpi.com http://www.mdpi.com/ - / / / ?type=check_update&version= http://dx.doi.org/ . /su http://www.mdpi.com/journal/sustainability sustainability , , of on fossil fuels, are increasing, while labor opportunities, species and ecosystem diversity decrease continuously [ , ]. social agriculture is one approach within the broader concept of multifunctional agriculture, counteracting the negative impact of the global market-oriented farming business. the understanding of agriculture as a multifunctional sector has been introduced in recent years as a leading principle for the future of agriculture and the transition and development of rural areas [ ]. the concept is based on the understanding of rural transition as a holistic process, which concerns not only economic and political, but also social, ecological and cultural aspects. agriculture is not only the production of food and fiber. it also includes multiple inter-related dimensions, broadening and deepening farming, as well as non-farming activities [ ]. social agriculture or “green care” includes initiatives that combine farming activities and agricultural resources with a broad variety of therapeutic goals, social practices, educational purposes or community services [ – ]. the approach encompasses all activities in which agriculture serves as an essential factor for achieving social, educational or health outcomes [ ]. the combination of agricultural activities with social and healthcare services thus, is a strategy of functional diversification, which preserves jobs and creates income opportunities, provides services to the community and can contribute to sustainable rural development [ – ]. state of the art and the added value of eco-social agriculture social agriculture is a traditional concept [ ], which, nowadays, has been revived and institutionalized under different socio-economic and social-political conditions. in the last two decades, scientists, professionals and activists from all over europe have researched the social and health effectiveness of green care as an approach of social innovation and new local welfare, and its characterization and implementation in the various european countries [ , , ]. additionally, at the european level, networks of social agriculture emerged in the past two decades, such as the sofar project (from to ), which united the seven eu countries belgium (flanders), germany, france, ireland, italy, the netherlands and slovenia [ ] and the “multifunctional agriculture in europe” (maie) project in [ ]. at the same time, networks developed at the national level, such as the “german working group on social agriculture” (dasol) [ ] or the italian “forum nazionale agricoltura sociale” (fnas) [ ]. although a large part of the scientific publications focuses on the therapeutic effects of green care [ ], since , an increasing number of studies focuses on their practical aspects for rural development and the maintenance of smaller farming entities. some examples are studies on social agriculture in connection with stakeholder and institutional networks [ ], rural and community development [ , – ] and social relevance [ ]. there is also an increasing number of studies with emphasis on agroecological practices, ecosystem services, local and traditional breed and crops and landscape conservation [ – ]. organic and biodynamic cultivation methods are popular agricultural practice in social agriculture, as they are best suited to social agriculture activities with disadvantaged people and other target groups. according to the report published by the italian rete rurale nazionale [ ] on social agriculture in italy, almost % of the examined initiatives (n = ) adopt organic or biodynamic farming methods. comparable results can be found in a study in the spanish region of catalonia, where % of the structures of social agriculture follow the principles of organic and agroecological farming [ ]. according to wiesinger et al. [ ], one third of over green care farms in austria are organically farmed, while similar results can be found in limbrunner and van elsen [ ] on social agriculture in germany. studies and reports are underlining that not only environment and natural resources are benefiting from the application of organic farming, and social, psychological and health aspects also gain importance and effectiveness. according to these studies [ , , , , ] the following added values have been identified: sustainability , , of • the provision of jobs in a chemical-free, healthy and relaxing environment that promotes physical and mental health, social relationships, as well as the empowerment and self-esteem of people; • the stronger therapeutic, inclusive and emotional effects through a closer contact with the living (soil, animals, plants), the perception of growth processes and outcomes, and the meaningfulness of producing food and goods for people and the community; • the educational added value of an agricultural system that respects the environment and biodiversity, which supports the development of an appreciative attitude and relationship towards nature and agriculture and boosts the promotion of long-term eco-social actions and awareness of sustainability; • the preservation and promotion of biodiversity, ecosystem services, multifunctional cultural landscapes, local products and traditions, with the aim of improving the quality of life in rural and disadvantaged areas by creating social cohesion and provision of services. . material and methods . . upas—unlocking the potential of social agriculture the unlocking the potential of social agriculture (upas) project used a transdisciplinary approach to investigate the field of social agriculture, which is currently regulated by law in italy. the project started in autumn and ended with march . it was led by the social science-area of the faculty of education and involved the faculty of science and technology at the free university of bozen-bolzano. italy is considered a pioneer in social agriculture, and is also ahead of the south tyrolean reality. the concept of social agriculture introduced in italy with law / is seen as a declination of multifunctional agriculture, representing one of the pillars for the development of rural areas. this law defines the activities of social agriculture that include the development of interventions and services with a social, therapeutic, educational or work integration objective. according to the law, social agriculture benefits disadvantaged people (physical or mental disabled people, drug addicts, prisoners, migrants, etc.) and people (especially children and elderly) residing in fragile rural areas such as mountains or isolated centers [ ]. in june , the autonomous province of bolzano south tyrol passed a law on social agriculture for the province. in doing so, it follows other regions of italy that have already adopted regulations [ ]. the project aims to take stock of the activities of social agriculture in south tyrol and other italian regions, as well as to analyze the actors and their experiences in this field. it evaluates development perspectives, possible new user groups and the prerequisites for further development. the focus lies on social and ecological aspects of social agriculture and on a comparative look at the established experiences in italy. . . methods as part of the upas research project at the free university of bozen-bolzano, an explorative research based on the expertise of non-academic actors in the field of social agriculture and field-visits of institutions, acting in eco-social agriculture was carried out. the cases are situated in the italian regions of south tyrol ( ), trentino ( ), veneto ( ), sicily ( ), lombardy ( ), friuli venezia giulia ( ) and liguria ( ). another four case studies have been analyzed in austria, respectively located in tyrol ( ), styria ( ) and carinthia ( ), and one in madrid, spain. data collection based on observation, interviews and a literature review was carried out from may to march . the case studies are agricultural businesses, social cooperatives, public facilities and agricultural projects that offer therapeutic, educational, nursing or social services to a broad target group of people. in total, farms in social agriculture have been selected in italy and austria through an internet research and by interviewing experts in the field of social agriculture. for the selection, the austrian platform “arge green care—wo menschen aufblühen” ( ) [ ] and the two italian online platforms “forum nazionale agricoltura sociale “( ) [ ] and “fondazione campagna amica-coldiretti” ( ) [ ] were consulted. the project in madrid has been included in the study as sustainability , , of the author visited it during a study visit organized through a collaboration between crea-pb (research organization for agricultural research and agricultural economics) and imidra (madrid institute for rural, agrarian and food research and development), as part of the activities of the national rural network (rete rurale nazionanle – ) in october . semi-structured interviews were held with non-academic/non-scientific actors, mostly the managers, of the selected initiatives or farms. they were carried out in most of the cases as part of a field-visit or in some cases by telephone. the interview included questions concerning the initiative itself (e.g., start of initiative, legal form and agricultural area), the specific activities or offers of social agriculture (e.g., social, education or therapeutic offers) and agricultural practices (e.g., cultivation methods, crops and breeds diversity). in addition to these questions, open discussions were held, in order to find out more about the specific experience, motivation, hurdles and potential of the initiatives. . results . . social agricultural practices in italy, south-eastern austria and madrid about % of the analyzed case study initiatives started their social agricultural activities in the past ten years, while only % started it before the year . the main social aim of cases is represented by social and labor integration, followed by environmental education and education for sustainability. nursing and childcare services are offered only by one single initiative. furthermore, % of the cases combine integrational and educational activities and reach, therefore, a bigger target group. therapy services play a minor role in the analyzed initiatives. a total of five social agriculture initiatives recovered and manage previously abandoned agricultural areas and % of the companies cultivate autochthonous and/or rare crop varieties and/or animal breeds. a total of case studies are cultivating a brought diversity of to different plant species on their fields. small farm shops, gruppi di acquisto solidale (gas, italian for ethical purchasing groups) and other forms of direct marketing are characteristic for social agriculture initiatives and adopted by % of the studied initiatives. . . actors, motivations and institutions the legal forms of the analyzed case studies are divided in social cooperatives ( ), agricultural businesses ( ), third-sector-organizations ( ), public institutions ( ), agricultural cooperatives ( ) and private sector organizations ( ) that use agricultural activities for social, educational and/or nursing purposes (table ). this spreading of providers confirms the national situation in italy [ ], where social cooperatives are the dominant actors in social agriculture with %, while private farms have a share of %, third-sector-organizations % and public entities %. most of these organizations emerged within the last years. a total of % of these providers are specialized in labor integration and % in environmental education. as a result, they directly foster the shift to ecological agriculture and sustainable rural development. social cooperatives, indeed, are especially appropriate for this field. combining social-agriculture with social cooperative organization according to the italian law n. / opens a broader space for synergies and creative solutions. this law recognizes that a social cooperative of type b, aiming to encourage integration in employment for the benefit of disadvantaged persons, can work in the agricultural sector, as well as in the industry, trade and service sector. social cooperatives allow for interesting experiments by merging agricultural production with social, cultural, ecological and political objectives [ ]. sustainability , , of table . overview of the case studies of eco-social agriculture in the study area of the italy and the south-eastern austria and madrid, differentiated according to the legal forms of agricultural business, social cooperative, agricultural cooperative, private sector, public institutions and third sector. name of the initiative municipality/region year main social aims agricultural practices agricultural company/farm santerhof mühlbach/province of bolzano social and labor integration of people with special needs, educational activities for schools organic fruit and wine production; animal husbandry, breeding of an autochthonous pig breed al confin vicenza/veneto labor integration of disadvantaged young people; farm-kindergarten organic production of vegetables, cultivation of local varieties; animal husbandry, local chicken breed la costa sarcedo/veneto social and labor integration of disadvantaged young people organic wine, olive and vegetable production, cultivation of an autochthonous grape variety; use of regenerative energy la pachamama marostica/veneto social and labor integration; educational activities with schools; guided trekking with donkeys; courses in organic agriculture organic wine, olive, cereals and vegetable production, cultivation of autochthonous corn variety; beekeeping valentinhof meran/province of bolzano social and labor integration of migrants and refugees organic production of fruits and vegetables almerleben dölsach/tyrol, austria educational activities for children and schools; family-adventure-days at the farm; organic agriculture; forestry; animal breeding peintnerhof liesing/carinthia, austria educational activities for schools; seminars on heathy lifestyles and nutrition with focus on people with civilization diseases organic agriculture; breeding of rare autochthonous sheep and trout species; la capra felice frassilongo/province of trento social integration of migrants and refugees; educational activities with schools; sustainable tourism organic goat breeding for milk and cheese production; keeping of a rare autochthonous goat species; landscape restoration, recovered abandoned land biosozialhof vintlerhof brixen/province of bolzano social and labor integration; pet therapy with donkeys; educational activities organic cultivation of cereals and vegetables; beekeeping; breeding of donkeys and poultry; sustainable forestry il giardino delle bio-diversità augusta/sicily n.d. labor integration of migrants and refugees organic cultivation of fruit and vegetables; recovered abandoned land sustainability , , of table . cont. name of the initiative municipality/region year main social aims agricultural practices social cooperative quetzal modica/sicily labor integration; creation of circular economy and fair work conditions in agriculture cultivation and conservation of old, local almond-specie; processing of fair-traded chocolate school on the farm all over the province of bolzano environmental education and education for sustainable development through the offer nature and farm experiences composed by mountains and valley, dairy and fruit farms, some of them using organic production methods conca d’oro bassano del grappa/veneto social and labor integration; assisted housing for disadvantaged people organic cultivation autochthonous varieties of vegetables, fruit, cereals and olives; restoration of cultural landscape by planting trees and hedges farm-women cooperative south tyrol all over the province of bolzano offers ranges from near-natural childcare, summer care to childcare at events as well as senior care children and seniors are supervised at the farms that work partially with organic methods cadore scs pieve di cadore/veneto social and labor integration of people with disadvantages and migrants organic cultivation of artichokes; restoration of high-alpine landscapes, maintenance of forest and hiking paths terre altre masi di cavalese/province of trento social integration: activities related to nature protection, environmental education and nutrition with schools and adults; forest-kindergarten biodynamic cultivation of old, local varieties of cereals, vegetables, fruit and medical plants; beekeeping; preservation of agricultural heritage l‘arcolaio siracusa/sicily labor integration for prisoners in and outside of the prison structure and for migrants and refugees organic cultivation of berries, vegetables and fruits nazareth cremona/lombardy labor integration of disadvantaged people; housing-support; creation of local markets and economic circuits organic cultivation of vegetables; processing of local products cooperativa samuele trento/province of trento social and labor integration for people with disadvantages organic cultivation of wine, fruit and vegetables; beekeeping vinterra mals/province of bolzano social and labor integration organic cereals and vegetable production m vicenza/veneto labor integration of prisoners organic production of vegetables and fruit; organic bakery sustainability , , of table . cont. name of the initiative municipality/region year main social aims agricultural practices public institutions biologischer gartenbau latsch latsch/province of bolzano labor integration of people with mental diseases; direct marketing production of organic seeds and seedlings; cultivation and processing of vegetable also old varieties sägemüllerhof gais/province of bolzano social integration and therapy offer for people with mental diseases; assisted housing biodynamic cultivation of vegetables, cereals and potatoes; breeding of endangered, local cattle species; restoration of crushed stone depletion orti sinergici, legami di terra casalmaggiore/lombardy labor integration with disadvantaged people; open community gardening biodynamic gardening; permaculture; cultivation of old plant varieties agrolab perales de tajuña/community of madrid, spain social integration of unemployed people and people at risk of social exclusion; community cohesion and local economy three-year training on organic farming and marketing of agricultural products; cultivation of local varieties; recovering of abandoned land agricultural cooperatives consorzio le galline felici catania/sicily labor integration of migrants and refugees; creation of fair work conditions in agriculture support of member-farms in producing sustainable, organic and fair products, as well as in the marketing of products consorzio delle valli e dolomiti friulane tramonti di sotto/friuli venezia giulia social integration of migrants and disadvantaged people; activities to promote sustainable tourism composed by small multifunctional farms, some are organic; landscape restoration and recovering of abandoned pastures private sector Ökologische landwirtschaft attendorf hitzendorf/styria, austria social integration of disadvantaged young people organic production of fruit, vegetables and herbs projekt salewa garden bozen/province of bolzano social integration of refugees and migrants urban gardening project based on the principles of permaculture third sector heimstätte birkenhof velden am wörthersee/carinthia social and labor integration biodynamic production of cereals and vegetables; breeding of autochthon poultry, cows and donkeys sustainability , , of table . cont. name of the initiative municipality/region year main social aims agricultural practices third sector villa rizzi sardagna/province of trento social and labor integration of disadvantaged young people organic production of aromatic and medical herbs as well as vegetables semirurali gärten bozen/province of bolzano social integration of migrants; educational activities with schools and families from the community urban gardening based on organic agriculture for family-subsistence; beekeeping il pomodoro bolzano vicentino/veneto labor integration of disadvantaged young people organic agriculture and gastronomy fuori di zucca vicenza/veneto labor integration of disadvantaged young people. shop sells organic products coming from social agriculture initiatives of the surroundings of vicenza progetto integrazioni (chapter . ) manarola/liguria social and labor integration of socially disadvantaged people, migrants and refugees recovering of agricultural land by the restoration of dry-stone walls so to reallow cultivation of wine and olives the year refers to the year in which the organization started its social agriculture activities. sustainability , , of another result of our field research is, that bottom-linked initiatives, such as local cooperatives of eco-social agriculture often arise from the actor’s motivation to promote changes in the existing conditions of agribusiness, and to create new opportunities for rural and disadvantaged areas. they tend to establish a direct relationship between producers and users, to increase awareness of natural resources, as well as appreciation and respect to those involved in food production [ – ]. the concern of the actors besides the improvement of the life-situation of the involved disadvantaged persons is the ecological aim. many of them underline the fact that it does not make sense to focus on human health and ignoring the health of nature. the proximity of social and ecological objectives of small farms and local cooperatives in social agriculture is evident. the farmer of la pachamama, veneto [ ] for instance, expressed it in the following way: “if i pay heed to the health of people, biological farming is a precondition.” social agriculture without the sensibility for natural circuits, without ecological responsibility, for him, is not imaginable. on the other side, social professionals working in eco-social agriculture initiatives, show a broader understanding of users. their focus is not primarily on the specific disadvantages or deficits, but on the potential, vocation and dedication and how to develop it in a socio-productive way. they define their role as facilitators who have to create the context to strengthen people’s capacity, to increase their self-efficacy and stability in daily life. they build person-centered as well as institution-centered networks for the social integration of users and the embedding of the social farming organization as a complementary system, which takes part in the process of decentralization and innovation of local welfare, especially in terms of the living environment of those affected [ ]. derived from the observation and interviews we collected during one and a half year, a general definition of eco-social agriculture has been created: eco-social agriculture is a combination of social services and responsible agricultural practices, an innovative approach and a sociopolitical mindset that responds to the negative effects of the globalized agricultural sector and population decline in rural areas. it supports environmentally friendly and regenerative production methods, while locally embedded educational, therapeutic, cultural and economic services are carried out in the sense of a sustainable society. thus, actors in social agriculture are often pioneers of eco-social transformation of rural areas on one, and of new local welfare systems on the other side. the italian association for biological agriculture (aiab) underlines the complementarity of social and ecological motivations of actors in social agriculture who predominately represent an attitude committed to the common good [ ]. in addition, some of the actors we investigated restore historical cultural technics and cultural goods or revitalize traditional local species of plants and animals, contributing to cultural and biological diversity and local resilience. one of these examples will be presented below. . . components of eco-social agriculture in order to accompany present and future social agriculture initiatives towards an eco-social transformation and to foster the symbiosis between agriculture, humans and nature, a guideline composed by five eco-social components has been created and checked with interviewees. these components form a basis for the growth and further development of eco-social agriculture and are put together to inspire farmers, community initiatives, social cooperatives and stakeholders from the private and public sector. they indicate which direction eco-social initiatives can take to get closer to more inclusive communities, sustainable rural areas and an environmental-friendly agriculture. each component is accompanied by a statement, as well as a more detailed explanation: . empowerment of disadvantaged people: eco-social agriculture enhances personal skills and self-esteem, with the aim of the social inclusion of disadvantaged people. support of human-nature relationships embedded in natural cycles and rhythms, sensual experience with nature including animals; increase self-efficacy in the production of food, empowerment through the activation of human potential based on suitable tasks, resilience through taking responsibility, sustainability , , of success experiences, self-perception through physical activities; reproduce real-world and employment-like conditions. . environmentally friendly, organic-ecological agriculture: eco-social farming preserves the health of soil, plants, animals, people and the planet as a whole by reproducing natural cycles, increasing biodiversity and maintaining ecosystem services (figure ). it is based on natural cycles, such as the preservation of soil fertility, carbon storage capacity, natural water balance and microbial soil life; it avoids the use of chemical-synthetic pesticides, hormones and synthetic fertilizers; attention is paid to promoting biodiversity, animal welfare and human health; examples are practices based on the principles of agroecology and cultivation, such as organic, biodynamic agriculture, permaculture and/or traditional agroforestry or silvopastoral systems. . protection of nature, resources and cultural landscapes: eco-social farming supports the conservation and restoration of valuable cultural and natural landscapes and strives to preserve biodiversity. measures and practices for the protection of species, natural resources, biotopes and/or landscape include the establishment and maintenance of protected areas; the preservation, promotion or reintroduction of animal and plant species worthy of protection, like rare or endangered traditional local breeds and crops; and the promotion of pollinators (e.g., wild and honey bees); it also includes the maintenance of ecosystem services and the restoration of ecosystems and cultural landscape, such as wetlands, alpine pastures and meadows. . support to the community: eco-social agriculture supports the use of local resources and the creation of networks, in order to reinforce regional economic cycles and to lead rural communities towards a sustainable development. it supports local-regional cycles and the resilience of a rural region by embedding production and marketing in local economic circuits, and by creating of job opportunities; preserving cultural heritage, traditional agricultural practices and knowledge, for example through the production of regional products; favors the decentralization of social services by new actors in the social environment, the creation of new networks between stakeholders from various sectors (e.g., health, education, social, agriculture, forestry, environment). . education for sustainable development and environmental education: eco-social farming fosters an appreciative attitude towards farming and nature and strengthens awareness, sustainability and respect towards common environment and resources (figure ). it includes formal and informal educational and experience contexts that cover topics ranging from sustainability, ecology, biodiversity, traditional agriculture, life on a farm, food production and natural resources, up to environmental and climate awareness; it promotes in an interactive, participative, researching and action-oriented way, personal skills, such as critical thinking, teamwork, solidarity, community cohesion and sustainable lifestyles. to account for the ecological long-term effects of social agriculture, more research is needed over the coming years and decades. the entanglement of ecological and social value added becomes apparent. in order to make the appearance and application of the components more concrete, a case study, which was evaluated as part of the upas research project at the university of bolzano, will be illustrated. sustainability , , of sustainability , , x of figure . the social cooperative terre altre applies biodynamic cultivation methods and grows more than different crops on two hectares. they also practice apiculture, environmental education and recovered numerous local weed varieties. author: terre altre. figure . children experience agriculture and the diversity of medical herbs on the fields of the terre altre social cooperative in val di fiemme, trentino, italy. author: cristina vinante, terre altre. figure . the social cooperative terre altre applies biodynamic cultivation methods and grows more than different crops on two hectares. they also practice apiculture, environmental education and recovered numerous local weed varieties. author: terre altre. sustainability , , x of figure . the social cooperative terre altre applies biodynamic cultivation methods and grows more than different crops on two hectares. they also practice apiculture, environmental education and recovered numerous local weed varieties. author: terre altre. figure . children experience agriculture and the diversity of medical herbs on the fields of the terre altre social cooperative in val di fiemme, trentino, italy. author: cristina vinante, terre altre. figure . children experience agriculture and the diversity of medical herbs on the fields of the terre altre social cooperative in val di fiemme, trentino, italy. author: cristina vinante, terre altre. sustainability , , of . . (drystone)walls for social inclusion: the integrazioni project in the cinque terre national park located in the region of liguria, northwestern italy the project integrazioni, which started in , is inspired by the model of social agriculture, and offers an opportunity to refugees and socially disadvantaged people to complete a qualification-internship in agriculture and drystone wall construction. these internships are intended to support people in difficult life situations, to gain work experience and to receive a fixed income. on the other hand, it forms workforces with skills in the farming sector, in order to support agricultural businesses and restore drystone walls. this project has been possible thanks to the contribution of ten different local, regional and national institutions. the story of the project begins with a storm which severely damaged the picturesque coastal villages of the cinque terre national park in . the effects were particularly negative for the centuries-old terrace landscape, the infrastructure and, consequently, for the population, the ecosystem and the economy of this fragile area. after this destructive event the villagers of manarola (located in the national park area) founded the fondazione manarola cinque terre onlus [ ] with three main aims: ( ) to adopt landscape restoration measures in order to protect the territory and to support the hydrogeological functions of the soil; ( ) to recover abandoned agricultural area (approximately % of the cultivated area is abandoned) and make it again available to the cultivation of vine and olives; and ( ) to preserve agricultural traditions and keeps old drystone wall construction techniques alive. the lack of local workforces in manarola, due to over aging and migration of the population, led to the cooperation with caritas diocesana la spezia-sarzana-brugnato, which manages the government structures for refugees and asylum seekers in the nearby city of la spezia, and is also a reference point for socially disadvantaged people. through this cooperation the project integrazioni was born. caritas is responsible for the work integration process, the organization of grants and internships and the selection of the trainees. the training is divided into three phases: in the first phase, the trainees receive a theoretical basis and a training with agricultural tools and practices. phase two takes place on the agricultural terraces that surround manarola. the foundation selects the terraces and get them through a free loan for use from the owner. here is where the trainees learn to restore drystone walls, to clean the rainwater drainage system and to free the landscape from invasive shrubs. the trainees are accompanied by four elderly villagers with long-term experience in the ancient construction technology of the drystone walls. in the third and final phase, the trainees who want to continue the experience in the agricultural sector will be placed in private farms, on wineries or social cooperatives located in the national park area or in the nearby villages. since the beginning of the project in , until and after two training seasons, a total of square meters of agricultural area had been recovered, while square meters of drystone walls have been restructured. a total of square meters of the recovered areas have been assigned to local farms while square meters will be assigned to the local agricultural cooperative cinque terre [ ]. the integrazioni project has been chosen as best-case for its variety of ecological and social benefits produced within a disadvantaged territory. the collaboration of local and regional, public and private actors, combined with innovative and inclusive approaches, shows how unemployment and landscape degradation can be defeated by creating new job opportunities and services, such as social inclusion and environmental protection. furthermore, the “art of drystone walling, knowledge and techniques” was added in the list of unesco intangible cultural heritage in , after italy and other european countries submitted the application [ ]. . discussion and conclusions eco-social agriculture can be characterized by the combination of five components, delineating the added value that the approach is able to provide to people, community and nature [ ]. common to all approaches is the holistic view of the person, nature and the region. following the defined components, all of the analyzed projects and initiatives can be attributed to eco-social agriculture. in fact, each of the analyzed case study initiatives fulfills at least one or more components of eco-social agriculture. sustainability , , of the implementation and the field of activities can shift, depending on the circumstances, possibilities and local needs. these initiatives do not only opt for organic or biodynamic cultivation methods. many projects revive agricultural traditions and preserve local crop varieties and/or animal breeds. the diversity of animal and plant species stands also for the diversity of people: diversity is turned into an enriching and strengthening resource that benefits nature and society. diversity contributes to strong and healthy ecosystems, but also to flourishing communities. in the field of social work and local social policy, the approach can be seen as social innovation, able to generate new local welfare-settings. it must be taken into account, however, that within this competitive sector, social agriculture as a new welfare-supplier needs political support, as well as the establishment of a social and environmental policy framework and funding opportunities. the european union offers already wide range of funding applicable in social agriculture, for example the “european regional development fund” (erdf), the “european agricultural fund for rural development” (eafrd) and the “european social fund” (esf) [ ]. additionally, the life program for environmental, nature and climate protection projects [ ] could be interesting to foster the ecological aspects of social agriculture in future. in addition, the upcoming eu h program “from farm to fork” fosters a new approach in the field of new producer-consumer relation, which is an essential part of social agriculture [ ]. the embedding processes of eco-social agriculture represent a great potential for disadvantaged people, as well as for the entire society. additionally, regional cycles and resilience of the rural areas can profit. with its diverse informal, formal and non-formal educational processes, eco-social agriculture is helping to shape an eco-social restructuration of society. it is primarily based on the benefits for the disadvantaged, for the social environment and for nature. eco-social agriculture sees disadvantaged people, as well as all people as part of a social structure and as part of nature. this shows that societal change has the potential to support the necessary eco-social turn [ , , ]. as our field studies show, especially bottom-linked initiatives and social cooperatives in the field of social agriculture, are based on interrelated structures, transversal networks, strong local-regional embeddedness and a large weight of social and cultural values. furthermore, eco-social agriculture unites three social spheres: the socio-cultural, the value-creation and the political sphere with community decision-making processes and diverse local, regional and national co-operations. to sum up, three basic characteristics describe eco-social agriculture as intended in this article: (i) the combination of social needs of rural and disadvantaged areas, such as social inclusion processes, work integration, educational activities, therapy and care offers for people with special needs, based on sensibly designed agricultural activities, always considering gender equality and fair working conditions; (ii) the active interaction and cooperation at local-regional level with the population, institutions, companies, politics and social networks to promote identity, coherence, solidarity and support to local economy; (iii) the responsible use of natural resources in order to protect the health and well-being of current and future generations and the environment, the promotion of ecological practices and the conscious integration of measures to preserve biodiversity and the cultural landscape. author contributions: conceptualization, s.u.e.; principle investigation, s.n., s.u.e., a.b.; writing-original draft preparation, s.n., s.u.e., a.b.; writing-review and editing, s.u.e., s.n.; supervision, s.u.e.; project administration, s.u.e.; funding acquisition, s.u.e. all authors have read and agreed to the published version of the manuscript. funding: this research was funded by free university of bozen-bolzano. acknowledgments: funding for this research was provided by upas project from the free university of bolzano, italy. we thank all farmers, representatives of social professions and leading persons of social cooperatives for their contribution, sharing their knowledge and experience and guiding us through their social agriculture initiatives and fields. the authors are also grateful to two anonymous reviewers for their valuable and constructive comments. conflicts of interest: the authors declare no conflict of interest. sustainability , , of references . tilman, d.; cassman, k.g.; matson, p.a.; naylor, r.; polasky, s. agricultural sustainability and intensive production practices. nature , , – . 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our planet, our future. available online: https://ec.europa.eu/info/strategy/priorities- - /european-green-deal/actions-being-taken- eu/farm-fork_en (accessed on june ). . elsen, s. eco-social transformation and community-based economy; routledge: london, uk; new york, ny, usa, . © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . /su https://prodottobiosociale.files.wordpress.com/ / /agricsociale .pdf https://prodottobiosociale.files.wordpress.com/ / /agricsociale .pdf https://www.reterurale.it/flex/cm/pages/serveblob.php/l/it/idpagina/ http://www.forumagricolturasociale.it/wp-content/uploads/ / /agricoltura-biologica-e-sociale-strumento-del-welfare-parte.pdf http://www.forumagricolturasociale.it/wp-content/uploads/ / /agricoltura-biologica-e-sociale-strumento-del-welfare-parte.pdf https://www.greencare-oe.at https://www.greencare-oe.at https://www.campagnamica.it https://www.campagnamica.it http://www.asineriasociale.it/ https://fondazionemanarola.org/i-risultati-ottenuti-dalla-fondazione-manarola-in-quattro-anni-di-operato https://fondazionemanarola.org/i-risultati-ottenuti-dalla-fondazione-manarola-in-quattro-anni-di-operato https://ich.unesco.org/en/rl/art-of-dry-stone-walling-knowledge-and-techniques- https://ich.unesco.org/en/rl/art-of-dry-stone-walling-knowledge-and-techniques- https://ec.europa.eu/info/strategy/priorities- - /european-green-deal/actions-being-taken-eu/farm-fork_en https://ec.europa.eu/info/strategy/priorities- - /european-green-deal/actions-being-taken-eu/farm-fork_en http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	material and methods 	upas—unlocking the potential of social agriculture 	methods 	results 	social agricultural practices in italy, south-eastern austria and madrid 	actors, motivations and institutions 	components of eco-social agriculture 	(drystone)walls for social inclusion: the integrazioni project in the cinque terre national park located in the region of liguria, northwestern italy 	discussion and conclusions 	references poster presentation open access naturalistic study of the joint presence of headache and pets d moscato*, b calabrese, fr moscato from the european headache and migraine trust international congress london, uk. - september introduction pet therapy is our first choice intervention for the therapy of children’s headache, since in the majority of children in growing up age headache is often linked to a situation of psycho-social discomfort [ ]. on the basis of several works, which had found that just the simple presence of pets was an improvement factor of the physical conditions of several patients [ , ], we wanted to ascertain whether also the simple presence of pets (mammals) could be related to the development of childhood headache. methods in a sample chosen in compulsory schools of our district we administered a questionnaire that would use (ihs, ) for the diagnosis of headache in the fifth year of primary school. the questionnaire, in addition to the data relating to the number of brothers and sisters and social conditions, indicated the presence of pets (mammals) in the family nucleus. results children participated in the study ( f. m. range - years), with diagnosis of migraine . %( . %mwa, . mwa )tension type headache . %(ftth %, ctth . %). no significant differences were found in the number of brothers and sisters, and in the social conditions. the presence of pets was equal to . % of healthy children, whilst it was . % in migraine sufferers, compared to . % in children suffer- ing from tension type headache. conclusion the presence of animals in the house is significantly con- current with a lower incidence of migraine and tension headache. the presence of pets in the house seems to be a factor of prevention of the onset of headache. from an epidemiologic standpoint, the interaction with a pet pre- supposes a difference of family lifestyle and a consequent development in the coping modality, enabling to mitigate the arising of those etiological cognitive factors, which can promote headache suffering. published: february references . moscato d, calabrese b, moscato fr:. cephalagia , (suppl ): - . . duvall a, nikolina m, pychyl , timothy a:. anthrozoös , ( ): - . . friedmann e, thomas , sue a, son , heesook , hat investigators:. anthrozoös , ( ): - . doi: . / - - -s -p cite this article as: moscato et al.: naturalistic study of the joint presence of headache and pets. the journal of headache and pain (suppl ):p . submit your manuscript to a journal and benefi t from: convenient online submission rigorous peer review immediate publication on acceptance open access: articles freely available online high visibility within the fi eld retaining the copyright to your article submit your next manuscript at springeropen.com idi sanità, via monti di creta roma, italy moscato et al. the journal of headache and pain , (suppl ):p http://www.thejournalofheadacheandpain.com/content/ /s /p © moscato et al; licensee springer. this is an open access article distributed under the terms of the creative commons attribution license (http://creativecommons.org/licenses/by/ . ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. http://www.springeropen.com/ http://www.springeropen.com/ http://creativecommons.org/licenses/by/ . 	introduction 	methods 	conclusion 	references [pdf] is there a scientific basis for pet therapy? | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / corpus id: is there a scientific basis for pet therapy? @article{giaquinto ista, title={is there a scientific basis for pet therapy?}, author={salvatore giaquinto and f. valentini}, journal={disability and rehabilitation}, year={ }, volume={ }, pages={ - } } 	salvatore giaquinto, f. valentini 	published 	medicine 	disability and rehabilitation purpose. pet therapy is a non-pharmacological intervention, but its scientific value is still undefined. methods. the first step to identify the papers of interest was the access to the medline library from until june and the cochrane controlled trials registry. results. at present there is consistent evidence of the protective effect against cardiovascular risk, mainly through the moderate exercise prompted by walking a dog. indeed, walking a dog may contribute to a physically active… expand view on taylor & francis oncovet.it save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations view all topics from this paper 	chronic disease 	registries 	pet therapy 	asthma, exercise-induced 	paper 	benefit citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency associations between pet ownership and frailty: a systematic review 	gotaro kojima, r. aoyama, y. taniguchi 	medicine 	geriatrics 	 	pdf save alert research feed pet owning, a tool for health promotion?! 	c. zugravu, m. tarcea 	biology 	 	view excerpt save alert research feed increasing physical activity by four legs rather than two: systematic review of dog-facilitated physical activity interventions 	r. rhodes, m. baranova, h. christian, c. westgarth 	medicine 	british journal of sports medicine 	 	 save alert research feed effect of animal-assisted therapy on the psychological and functional status of elderly populations and patients with psychiatric disorders: a meta-analysis 	javier virués-ortega, r. pastor-barriuso, j. castellote, adolfo población, j. de pedro-cuesta 	psychology 	 	 	view excerpts, cites background and methods save alert research feed psychosocial and psychophysiological effects of human-animal interactions: the possible role of oxytocin 	a. beetz, k. uvnäs-moberg, h. julius, k. kotrschal 	medicine 	front. psychology 	 	 	pdf 	view excerpt, cites background save alert research feed prevention of transmitted infections in a pet therapy program: an exemplar. 	p. hardin, j. brown, m. e. wright 	medicine 	american journal of infection control 	 	 save alert research feed allowing horses to heal: the healing power of equines in therapeutic settings 	bethany mota 	psychology 	 	 	highly influenced 	pdf 	view excerpts, cites background save alert research feed undercover dogs: pet dogs in the sleep environment of patients with chronic pain 	c. brown, yuluan wang, e. carr 	medicine 	 	 	pdf save alert research feed behavioral health staff's perceptions of pet-assisted therapy: an exploratory study. 	j. rossetti, susanne defabiis, camille belpedio 	psychology, medicine 	journal of psychosocial nursing and mental health services 	 	 	pdf save alert research feed promoting children’s well-being: therapy dogs 	m. jalongo, janine petro 	psychology 	 	 save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency pet-therapy: a trial for institutionalized frail elderly patients. 	m. f. stasi, d. amati, + authors m. molaschi 	medicine 	archives of gerontology and geriatrics. supplement 	 	 	pdf 	view excerpt, references background save alert research feed animal-assisted therapy for dementia: a review of the literature 	s. l. filan, r. h. llewellyn-jones 	psychology, medicine 	international psychogeriatrics 	 	 	pdf 	view excerpt, references results save alert research feed strategies for managing behavioural symptomatology associated with dementia of the alzheimer type: a systematic overview. 	d. forbes 	psychology, medicine 	the canadian journal of nursing research = revue canadienne de recherche en sciences infirmieres 	 	 	pdf save alert research feed pet ownership may be a factor in improved health of the elderly. 	d. dembicki, j. anderson 	medicine 	journal of nutrition for the elderly 	 	 	view excerpt, references background save alert research feed pet therapy and institutionalized elderly: a study on cognitively unimpaired subjects. 	g. colombo, m. buono, katya smania, roberta raviola, d. de leo 	medicine 	archives of gerontology and geriatrics 	 	 	pdf 	view excerpt, references background save alert research feed beneficial effects of pet ownership on some aspects of human health and behaviour 	j. serpell 	medicine 	journal of the royal society of medicine 	 	 	 	view excerpt, references background save alert research feed animal-assisted therapy in patients hospitalized with heart failure. 	k. cole, a. gawlinski, n. steers, j. kotlerman 	medicine 	american journal of critical care : an official publication, american association of critical-care nurses 	 	 save alert research feed physical activity and stroke in british middle aged men. 	g. wannamethee, a. shaper 	medicine 	bmj 	 	 	pdf 	view excerpt, references background save alert research feed pet ownership, but not ace inhibitor therapy, blunts home blood pressure responses to mental stress 	k. allen, b. shykoff, j. izzo 	medicine 	hypertension 	 	 	 	view excerpt, references background save alert research feed animal-assisted therapy ameliorates anhedonia in schizophrenia patients 	inbar nathans-barel, pablo feldman, b. berger, i. modai, h. silver 	medicine, psychology 	psychotherapy and psychosomatics 	 	 save alert research feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue experimental study on the therapeutic effect and underlining mechanisms of positron in pancreatic cancer cells. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /oncotarget. corpus id: experimental study on the therapeutic effect and underlining mechanisms of positron in pancreatic cancer cells. @article{wang experimentalso, title={experimental study on the therapeutic effect and underlining mechanisms of positron in pancreatic cancer cells.}, author={y. wang and m. li and rao diao and brian tung and dalong zhang and y. li}, journal={oncotarget}, year={ } } 	y. wang, m. li, + authors y. li 	published 	medicine 	oncotarget the purpose of this study was to assess the potential therapeutic effect of positrons emitted by f- -deoxy- -fluoro-d-glucose ( f-fdg) on pancreatic cancer cells and elucidate its underlying mechanisms. pancreatic cancer cells were incubated with different radioactive concentrations of f-fdg and evaluated for anti-cancer properties and underlining mechanisms. in addition, three groups of tumor-bearing mice were treated with different doses of f-fdg weekly, the tumor growth rate was… expand view on pubmed doi.org save to library create alert cite launch research feed share this paper citations view all figures and topics from this paper 	 figure 	 figure 	 figure 	 figure 	 figure 	 figure 	 figure view all figures & tables 	positrons 	fluorodeoxyglucose f 	neoplasms 	pancreatic carcinoma 	apoptosis 	cancer cell 	positron-emission tomography 	in situ nick-end labeling 	x-ray computed tomography 	dna nucleotidylexotransferase 	deoxyuridine triphosphate 	in vitro [publication type] 	transferase 	glucose metabolism disorders one citation citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency a pilot study treatment of malignant tumors using low-dose f-fluorodeoxyglucose ( f-fdg). 	d. paul, c. ghiuzeli, + authors e. popa 	medicine 	american journal of nuclear medicine and molecular imaging 	 	 save alert research feed references showing - of references sort byrelevance most influenced papers recency positherapy: targeted nuclear therapy of breast cancer with f- -deoxy- -fluoro-d-glucose. 	r. moadel, r. weldon, + authors e. dadachova 	medicine 	cancer research 	 	 	pdf 	view excerpt, references methods save alert research feed effective radiotherapy of primary tumors and metastasis with f- -deoxy- -fluoro-d-glucose in c bl/ mice. 	v. caridad, miriam arsenak, + authors p. taylor 	medicine 	cancer biotherapy & radiopharmaceuticals 	 	 	view excerpt, references background save alert research feed combination of nitric oxide stimulation with high-dose f-fdg promotes apoptosis and enhances radiation therapy of endothelial cells. 	jin-young paik, jinwon park, k. jung, e. lee, kenneth lee 	biology, medicine 	nuclear medicine and biology 	 	 	view excerpt, references background save alert research feed positron emission tomography agent -deoxy- -[ f]fluoro-d-glucose has a therapeutic potential in breast cancer 	r. moadel, a. nguyen, + authors e. dadachova 	medicine 	breast cancer research 	 	 	pdf 	view excerpt, references methods save alert research feed radiotherapeutic use of -deoxy- -[ f]fluoro-d-glucose – a comment 	m. meyer 	medicine 	breast cancer research 	 	 	 save alert research feed tumor aggressiveness and patient outcome in cancer of the pancreas assessed by dynamic f-fdg pet/ct 	r. epelbaum, a. frenkel, + authors a. dimitrakopoulou-strauss 	medicine 	the journal of nuclear medicine 	 	 	pdf 	view excerpt, references background save alert research feed fdg for therapy of metabolically active tumors. 	s. jaini, e. dadachova 	medicine 	seminars in nuclear medicine 	 	 	view excerpt, references background save alert research feed capsaicin and dihydrocapsaicin induce apoptosis in human glioma cells via ros and ca +-mediated mitochondrial pathway 	le xie, guanghong xiang, + authors dahua wu 	biology, medicine 	molecular medicine reports 	 	 	pdf save alert research feed in vitro and in vivo induction of apoptosis by capsaicin in pancreatic cancer cells is mediated through ros generation and mitochondrial death pathway 	ruifen zhang, i. humphreys, r. sahu, yan shi, s. srivastava 	biology, medicine 	apoptosis 	 	 save alert research feed matrine induces caspase-dependent apoptosis in human osteosarcoma cells in vitro and in vivo through the upregulation of bax and fas/fasl and downregulation of bcl- 	c. liang, j. zhang, z. shi, b. liu, c. shen, huimin tao 	chemistry, medicine 	cancer chemotherapy and pharmacology 	 	 save alert research feed ... ... related papers 	abstract 	figures and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue diagnosis & disruption: understanding guideline-consistent dementia care and patterns of transitions experienced by individuals with dementia by saskia nikali sivananthan bsc, the university of british columbia, canada, msc, mcgill university, canada, a thesis submitted in partial fulfillment of the requirements for the degree of doctor of philosophy in the faculty of graduate & postdoctoral studies (population & public health) the university of british columbia (vancouver) february ©saskia nikali sivananthan, ii abstract introduction early detection and management, as outlined in dementia guidelines, can improve outcomes and potentially reduce the number of transitions experienced between care- facilities. the objectives of this thesis were to: conduct a critical assessment of the literature on actual versus guideline-consistent dementia care; use population-level data to examine variations in receipt of guideline-consistent dementia care; understand longitudinal patterns of transitions and the factors that contribute to transitions; and assess if receipt of guideline-consistent dementia care and/or high quality primary care are associated with the number of transitions experienced. method population-level administrative data in british columbia were used to identify cohorts of individuals newly diagnosed with dementia in / and / . dementia guidelines were used to characterize clinical care individuals could receive. the proportion of patients diagnosed with dementia in / who received guideline- consistent dementia care and the probability that patient characteristics affected the likelihood of receiving each process was assessed. those diagnosed with dementia in / were followed forward -years after the first point of diagnosis and points of care when transitions were highest as well as factors that contribute to those transitions were assessed. the association of receipt of guideline-consistent dementia care and/or high quality primary care with the number of transitions experienced in the year of diagnosis was assessed using negative binomial regression. iii results older patients were less likely to receive guideline-consistent dementia care. a quarter of the cohort received an antipsychotic or non-recommended benzodiazepine. individuals living within rural health-authorities or of low income were more likely to receive antipsychotic treatment. transitions were highest in the year of diagnosis and at end-of-life, driven by acute hospitalizations. higher morbidity, living within rural health-authorities, and having behavioural symptoms associated with dementia were strongly associated with the number of transitions experienced. lastly, receipt of guideline-consistent dementia care and high quality primary care, independently, were associated with fewer transitions across care settings. conclusion patterns of inequality by age and income may signal barriers to guideline-consistent dementia care. the spike in transitions in the year following diagnosis highlights a distressing period for individuals with dementia, but suggests a useful target for interventions. iv preface this statement is to certify that the work in this thesis was conceived, designed, analyzed and written by saskia sivananthan. all research in this dissertation was approved by the university of british columbia’s behavioural research ethics board: ubc breb number h - . saskia sivananthan was entirely responsible for the work in chapters , , , , and . chapter is based on work conducted by saskia sivananthan, joseph puyat and dr. kimberlyn mcgrail. saskia sivananthan was responsible for the conception, design, development and management of the study, conducting the analysis and interpretation of the data, writing and revising the manuscript. joseph puyat contributed to the collection and analysis, dr. kimberlyn mcgrail contributed to the analysis, interpretation and edited the manuscript. chapter is based on work conducted by saskia sivananthan, ruth lavergne and dr. kimberlyn mcgrail. saskia sivananthan was responsible for the conception, design, development and management of the study, conducting the analysis and interpretation of the data, writing and revising the manuscript. ruth lavergne and dr. kimberlyn mcgrail contributed to the analysis, interpretation and edited the manuscript. a version of chapter has been published: sivananthan sn, puyat jh, mcgrail km. variations in self-reported practice among physicians providing clinical care to individuals with dementia: a systematic review. journal of american geriatric society ; ( ): - . v a version of chapter has been accepted: sivananthan sn, lavergne mr, mcgrail km. caring for dementia: a population-based study examining variations in guideline-consistent medical care. alzheimer’s & dementia a version of chapter is under review: sivananthan sn, mcgrail km. diagnosis & disruption: identifying points of care when transitions are highest for individuals with dementia a version of chapter has been accepted: sivananthan sn. short end of the stick? health care inequity in a vulnerable population of individuals with dementia. canadian geriatrics society journal of cme . vi table of contents abstract ........................................................................................................................................................ ii preface .......................................................................................................................................................... iv table of contents ................................................................................................................................. vi list of tables ............................................................................................................................................... x list of figures .......................................................................................................................................... xii list of abbreviations ......................................................................................................................... xiv acknowledgements ............................................................................................................................ xv dedication ............................................................................................................................................... xvii chapter - introduction ................................................................................................................... . introduction to the area of inquiry ............................................................................................. . research objectives and hypotheses ........................................................................................ . thesis roadmap ............................................................................................................................... chapter - background & literature review .................................................................... . what is dementia? .......................................................................................................................... . the social and financial impact of dementia ....................................................................... . care for dementia in the primary care setting .................................................................... . overview of services outside primary care ........................................................................... . . home and community care in british columbia ......................................................... . . long-term care in british columbia ................................................................................. . american and canadian guidelines for dementia care .................................................... . . dementia care guidelines in british columbia ............................................................. . variations in dementia care ........................................................................................................ . conceptual framework .................................................................................................................. . primary outcome measure: transitions and consequences ............................................ . . transitions for seniors ............................................................................................................ . . transitions for seniors with dementia ............................................................................. chapter – a systematic review of variations in dementia care physician practice patterns ................................................................................................................................. . introduction ....................................................................................................................................... . systematic review methods ........................................................................................................ . . search strategy ......................................................................................................................... . . data collection and data extraction ................................................................................. . . data analysis ............................................................................................................................. vii . results .................................................................................................................................................. . . variations in dementia care processes ............................................................................ . discussion ........................................................................................................................................... . . limitations .................................................................................................................................. . conclusion .......................................................................................................................................... chapter – methodology ............................................................................................................... . the health services research lens ........................................................................................... . . use of administrative databases ....................................................................................... . administrative data sources ....................................................................................................... . . the consolidation file ............................................................................................................ . . the medical services plan file ............................................................................................. . . the home and community care file ................................................................................ . . the hospital separations file .............................................................................................. . . the vital statistics deaths file ............................................................................................. . . pharmanet .................................................................................................................................. . . the college of physicians & surgeons of bc file ........................................................ . study design ..................................................................................................................................... . . identification of study cohort ............................................................................................. . construction of longitudinal files ............................................................................................ . . analytic and service variables............................................................................................. . . . health status ...................................................................................................................... . . . physician attribution process ....................................................................................... . . outcome variables .................................................................................................................. . . . long-term care facility transition ............................................................................ . . analytic models......................................................................................................................... chapter – caring for dementia: a population-based study examining variations in guideline-consistent care .......................................................................... . introduction .................................................................................................................................... . methods ........................................................................................................................................... . . data sources ........................................................................................................................... . . study population ................................................................................................................... . . recommended dementia care guidelines .................................................................. . . explanatory variables .......................................................................................................... . . statistical analysis ................................................................................................................. . results ............................................................................................................................................... viii . . final study participants....................................................................................................... . . variations in dementia care processes ......................................................................... . discussion ........................................................................................................................................ . . limitations ............................................................................................................................... . conclusion ....................................................................................................................................... chapter – identifying points of care when transitions are highest and the factors that contribute to them ................................................................................ . introduction .................................................................................................................................... . methods ........................................................................................................................................... . . data sources ........................................................................................................................... . . study population ................................................................................................................... . . primary outcome – transitions ........................................................................................ . . explanatory variables .......................................................................................................... . . statistical analysis ................................................................................................................. . results ............................................................................................................................................... . . baseline characteristics ....................................................................................................... . . aggregate healthcare use and transitions ................................................................. . . transitions during year of diagnosis ............................................................................. . . transitions at end-of-life .................................................................................................. . . factors associated with transitions ............................................................................... . discussion ........................................................................................................................................ . . limitations ............................................................................................................................... . conclusion ....................................................................................................................................... chapter – guideline-consistent dementia care and high quality primary care – is there an association with transitions? ...................................................... . introduction .................................................................................................................................... . methods ........................................................................................................................................... . . data sources and study population............................................................................... . . primary outcome - transitions ........................................................................................ . . measures of guideline-recommended dementia care & high quality primary care ....................................................................................................................................................... . . controlled explanatory variables .................................................................................... . . statistical analysis ................................................................................................................. . results ............................................................................................................................................... . . descriptive analyses ............................................................................................................ ix . . receipt of guideline-consistent dementia care and high quality primary care process ................................................................................................................................................. . . regression analysis .............................................................................................................. . discussion ........................................................................................................................................ . . limitations ............................................................................................................................... . conclusion ....................................................................................................................................... chapter - conclusion .................................................................................................................. . summary and key contributions ............................................................................................ . research findings ......................................................................................................................... . . variations in guideline-consistent dementia care – lesson learned from a systematic review ........................................................................................................................... . . persistent variation – getting past self-report using administrative data .... . . transitions – the year of diagnosis and disruption ................................................ . . the effectiveness of guideline-consistent dementia care ................................... . strengths and limitations.......................................................................................................... . future directions .......................................................................................................................... . areas for further inquiry ............................................................................................................ . conclusion ....................................................................................................................................... bibliography .......................................................................................................................................... appendix a, chapter ...................................................................................................................... a. objective of study protocol ..................................................................................................... a. method ............................................................................................................................................. a. . study design .......................................................................................................................... a. . population/comparators ................................................................................................... a. . interventions........................................................................................................................... a. . outcomes ................................................................................................................................ a. . inclusion and exclusion criteria....................................................................................... a. review process .............................................................................................................................. a. . search method ....................................................................................................................... a. . data collection and extraction procedure .................................................................. a. . critical appraisal ................................................................................................................... appendix b, chapter ....................................................................................................................... appendix c, chapter ...................................................................................................................... appendix d, chapter ...................................................................................................................... x list of tables table . – overview of thesis objectives and corresponding analytical chapters ............... table . - international classification of disease codes related to dementia, version ...... ..................................................................................................................................... ......................................... table . - international classification of disease codes related to dementia, version ........................................................................................................................................................................... table . - characteristics of studies evaluating physician practice patterns in dementia care ................................................................................................................................................................... table . - variations in physicians practice patterns measured by proportions for each dementia care process .............................................................................................................................. table . - key variables and data sources for analysis ................................................................ table . – detail of variables measuring characteristics in conceptual framework .......... table . – proportion of seniors + years of age residing in a ltc facility receiving guideline-consistent care ...................................................................................................................... table . – baseline characteristics of community-dwelling individuals newly diagnosed with dementia in / ..................................................................................................................... table . – baseline characteristics of individuals newly diagnosed with dementia in / ........................................................................................................................................................ table . – transitions and healthcare use during the entire study period ....................... table . – cohort characteristics stratified by rate of transitions ........................................ table . – multivariate regression analysis examining patient and practice factors associated with transitions experienced .......................................................................................... table . – description of primary care dimensions measured .............................................. table . – summary of sub-analyses and sub-cohorts ............................................................ table . –dementia care and primary care use in year of diagnosis .................................. table . – odds of receiving guideline-consistent care based on receiving a diagnosis in the community (relative to receiving an initial diagnosis in hospital) ............................ table . – multivariate regression analysis examining association of dementia care and primary care with transitions experienced in the year of diagnosis ..................................... table b. - cross-walk mapping a sample of drug identification numbers to corresponding anatomical therapeutic chemical groups for medications of interest ... xi table c. – baseline characteristics of individuals newly diagnosed with dementia in / who died during study period ........................................................................................... table c. a – percentage of individuals who died during study period who received laboratory testing and imaging processes outlined in guidelines stratified by patient characteristics ............................................................................................................................................ table c. b – percentage of individuals who died during study period who received prescriptions and dementia care management processes outlined in guidelines stratified by patient characteristics ...................................................................................................................... table c. a - proportional odds ratio for factors associated with receiving guideline- consistent care from multivariate modelling ................................................................................. table c. b – proportional odds ratio for factors associated with receiving guideline- consistent prescriptions and dementia care management processes, from multivariate modelling .................................................................................................................................................... table d. - longitudinal health care use ........................................................................................ table d. – principal diagnoses for patients newly diagnosed with dementia in hospital only ................................................................................................................................................................ xii list of figures figure . – assessment and publicly-funded service options in bc ...................................... figure . – conceptual framework guiding the thesis ................................................................ figure . – flowchart describing the approach used to identify all eligible studies ....... figure . – geographical locations of eligible studies from the usa .................................... figure . – historical cohort study design ....................................................................................... figure . – example of transitions that can be experienced over study period ................ figure . – pathways to publicly funded home and community care support .................. figure . – flow of study participants ............................................................................................ figure . – location of diagnosis of dementia (cohort ) ...................................................... figure . a – percentage of seniors receiving guideline-consistent lab testing and imaging ........................................................................................................................................................ figure . b – percentage of seniors receiving guideline-consistent prescription and dementia care management processes ........................................................................................... figure . a – adjusted odds ratio of receiving calcium, b , laboratory tests and computed tomography scans.............................................................................................................. figure . b – adjusted odds ratio of receiving acetyl-cholinesterase inhibitors, antipsychotics and non-recommended benzodiazepines ........................................................ figure . c – adjusted odds ratio of receiving a physical exam, counselling or specialist referral .......................................................................................................................................................... figure . – location of diagnosis of dementia (cohort ) ...................................................... figure . – survival curve of cohort ................................................................................................ figure . transitions rate in each year for those with < . , . - . , . - . and . + average transitions per year for / - / , by year of death (upto / ) .... figure . a – transition rates over time for those diagnosed in / , by year of death ............................................................................................................................................................. figure . b – hospitalization rates over time for those diagnosed in / , by year of death ............................................................................................................................................................. figure . c – other transitions over time for those diagnosed in / , by year of death ............................................................................................................................................................. xiii figure . – number and proportion of those eligible moving from community to ltc, by years since diagnosis ........................................................................................................................ figure . – frequency of different transition types experienced by newly diagnosed dementia patients .................................................................................................................................... figure . a – hospitalization rate over time for those diagnosed in / , by ltc status and year of death ........................................................................................................................ figure . b – hospitalization rate over time for those diagnosed in / , by ltc status and number of major adgs .................................................................................................... xiv list of abbreviations achi acetyl-cholinesterase inhibitor acg adjusted clinical groups adg aggregated diagnostic groups ad alzheimer’s disease adls activities of daily living atc anatomical therapeutic chemical bc british columbia ct computed tomography dad discharge abstract database dins drug identification numbers ha health authority hcc home and community care hsr health service research icd international classification of disease & related health problems ltc long-term care mri magnetic resonance imaging msp medical services plan nincds- adrda the national institute on aging and the alzheimer’s association workgroup pcps primary care physicians rubs resource utilization bands ses socioeconomic status tsh thyroid stimulating hormone xv acknowledgements i owe a big debt of gratitude first to my supervisor and mentor, dr. kimberlyn mcgrail. kim supported, mentored and nurtured me through my uphill battle to induct myself into a new field, make connections across the country and develop a meaningful thesis that i am proud of. this body of work would not be what it is without her sage advice, enthusiasm for results big and small and willingness to be available whenever i needed her. thank you kim for bringing me into the chspr family and for being such a wonderful supervisor and friend, what more could a graduate student possible ask for? a big thank you to my secondary supervisor, dr. morris barer, for such thoughtful and meticulous feedback on all of my work. given everything on your plate, i appreciate the time invested in reviewing my work with a fine toothcomb and for asking the difficult questions. your running commentary made revisions both valuable and entertaining. as well, i want to thank my committee members, dr. margaret mcgregor and dr. jason sutherland for their encouragement and for sharing their insights so generously. to ruth lavergne, a special thank you not only for your contributions to this thesis, but also for the pep talks, skype calls, drinks, comfort food and countless other generous ways in which you made this phd such a great experience. it won’t be forgotten. to all my colleagues at chspr, particularly dawn mooney (i owe you a drink! your ability to dawnify never ceases to amaze me), sandra peterson (for your ninja sas skills and patient responses as i taught myself to code), rachael mckendry and lindsay hedden, your support helped me build this thesis, thank you. xvi i want to acknowledge my two mentors, dr. lynn beattie and dr. larry chambers, both of whom gave of their time freely, listening to my thesis as it grew and morphed, and always providing sounding boards i could trust. i appreciate your advice and friendship. i also want to thank responsive care management, bill dillane and chris dalgish who made it possible for me to ground the framework of my thesis by truly experiencing life as a senior at a long-term care facility. a special thank you to karie warner (mill creek care centre), cathy fiore (o’neill centre), the warm staff and residents at both mill creek care centre and o’neill centre who answered all my questions, treated me as a long-term care resident no-questions-asked while making my stay as comfortable and informative as they could. lastly, thank you to mi familia. amma, appachchi and angelo, you have always supported me, my decisions and harebrained adventures. thank you for being my backbone, strongest champions and defenders. you made the sacrifices to give me the opportunities to be who i am today. i can reach higher in the assurance that you will always be there for me. to travis, my very own personal cheerleader, thank you for believing in me, nudging me forward when i was hesitant and for never ever allowing me to compromise my dreams. your unshakable faith in me and dedicated partnership is the foundation of my work. xvii dedication this thesis is dedicated to my two favourite people who taught me to value independence and joie de vivre at any stage of life: my grandmother sybil maud mary dehideniya and vincent. grandma, you are an inspiration, i am so proud to have a role model like you. vince, i still miss you. i know you’re enjoying a beer and a good laugh somewhere. chapter - introduction . introduction to the area of inquiry dementia is one of the most significant causes of disability among seniors, affecting . million people worldwide in and projected to double every years . in canada, an estimated , individuals were living with dementia in ( . % of canadian years or older) . in addition to memory loss, as the disease progresses, impairment manifests itself in other symptoms that include language disorders, difficulty with physically executing learned movement, inability to recognize objects, confusion and behavioral disturbances . the degenerative nature of the disease means that as it progresses, individuals require increased care, social support and assistance with activities of daily living (adls) , . it is a chronic disease with often devastating and long-term financial and social implications for the patient, caregivers and families. the key contact in establishing a diagnosis, managing the dementia and potentially connecting patients with community resources is the primary care physician. however, many primary care physicians have limited training in geriatric care generally and dementia care specifically. best practice dementia care guidelines can therefore play an essential role in helping primary care physicians confirm a diagnosis of dementia and then make decisions around managing their patients’ care, particularly during the early stages after diagnosis. guidelines on dementia care have been available, well established and regularly updated for almost three decades , . despite evidence that adherence to guidelines on dementia care can improve quality and outcomes for patients, reports of poor detection and inadequate management persist , . due to the chronic nature of the disease, physicians need to be able to determine a diagnosis, and develop a management plan as early as possible. equally important is the development of a longer-term care and life management plan for a condition that will worsen in severity, has no known effective treatment, and significantly affects quality of life and outcomes for patients and those around them. within that longer term plan, there will be an important series of care-change points, or transitions. a transition is defined as a situation in which “an individual physically moves from one place to another and stays there for at least one night” . the healthcare system is fractured, often forcing patients to transition between different facilities to receive care when experiencing highly stressful events. a high number of transitions represents a serious challenge to dementia patients and their caregivers because of the importance of stability and familiarity to those suffering from dementia , . a greater number of transitions between care settings also poses a serious challenge to the continuity of care and the safety of the patient and is associated with medication errors, preventable hospital readmissions and increased mortality risk – . some transitions are inevitable, but failure to develop a condition-sensitive care plan can lead to more transitions than are necessary, with effects on the health status and quality of life of the affected patients. the chronic nature of dementia requires care that provides accessibility, care coordination and continuity in order to meet the ongoing biopsychosocial needs of people with a primary diagnosis of dementia , . these are all attributes of high performing primary care. high quality primary care has been shown to be associated with fewer of the safety and quality deficiencies identified during transitions – . however few studies have assessed the experience of primary care in elderly populations and particularly not in vulnerable elderly populations such as those with dementia . as well, primary care physicians are in the best position to provide guideline-consistent dementia which has been shown to be associated with better outcomes for patients – , though no studies have assessed the association between receipt of guideline-consistent dementia care and transitions. . research objectives and hypotheses this thesis is designed to add needed research evidence to the area of primary care for people with dementia. the specific objectives and hypotheses of my thesis and the corresponding analytic chapters where they are found are outlined in table . and discussed in more detail below. table . – overview of thesis objectives and corresponding analytical chapters objective chapter conduct a critical assessment examining the existing research literature on actual physician practice patterns associated with the care of people with dementia and to what extent those practice patterns are consistent with published guidelines examine population-based variations in receipt of guideline- consistent dementia care and patient factors that are associated with that care examine transitions experienced longitudinally to establish patterns that can help identify points of care when transitions are highest and the factors that contribute to those transitions assess the association between receipt of guideline-consistent dementia care and/or high quality primary care and the number of transitions experienced research objective – a critical assessment of available research on the extent to which dementia care practice patterns are consistent with guidelines primary care physicians are gatekeepers who are often the first point of contact for people with dementia and are therefore in the unique position to make the diagnosis of dementia and to set in motion decisions about clinical care , , , but limited research is available on physician practice patterns in dementia care. available studies indicate wide variations in methodologies and responses regarding dementia care provided by physicians , . best practice guidelines for dementia care have been established in the medical community for several decades. the use of best practice guidelines has been shown to reduce variation and maintain, or even improve quality of care . therefore, my first objective is to determine the current state of knowledge on physician practice patterns with regard to dementia care using best practice guidelines and to determine to what extent actual practice, as reported in the literature, is consistent with guideline recommended care. i assess seven dementia care processes recommended by guidelines: formal memory testing; imaging; laboratory-testing; interventions; counselling; community service; and specialist referrals. results are presented in chapter . research question : based on the current literature, to what extent is actual practice consistent with guideline-recommended care? hypothesis: i) there is wide variation in physician practice patterns with regard to provision of dementia care, particularly discretionary dementia care processes. research objective – population-based variation in receipt of guideline- consistent dementia care for individuals with dementia the systematic review undertaken to meet research objective showed wide variation in the provision of guideline-recommended care by physicians. despite this, the available studies had significant limitations in study design, sampling and sample size, limiting interpretation of the extent of variation and its effect on outcomes of care for those with dementia . a recent publication from the canadian consensus conference on the diagnosis and treatment of dementia noted “perhaps more important than any of these knowledge gaps are the large gaps between what we know about diagnosis and what is practiced in many family physicians’ offices” . using administrative data to mitigate many of the limitations identified in past research, i examine the receipt of clinical services by seniors newly diagnosed with dementia in british columbia (bc), and compare patterns of care to those recommended by dementia care guidelines. by conducting this analysis at a patient level, i am able to examine potentially modifiable patient characteristics associated with any variation and differentiate warranted and unwarranted variation. i assess six dementia care processes measurable in administrative data: imaging; laboratory-testing; physical examination; pharmaceutical interventions; counselling; and specialist referrals, all within the first year of diagnosis. the specific research questions are as follows: research question a: what proportion of individuals newly diagnosed with dementia in bc receives each of the guideline-consistent dementia care processes? research question b: is there variation in receipt of guideline-consistent care, and if so, what are the patient characteristics most strongly associated with this variation? hypothesis: i) a high proportion of individuals will receive guideline-consistent laboratory and imaging processes of dementia care as these are more regularly administrated, while a lower proportion of individuals will receive all other, more discretionary processes of care. ii) there will be warranted variation in receipt of guideline-consistent care that can be explained by geographic location and health status. iii) there will be unwarranted variation by other patient characteristics, indicating potential inequity and lack of quality of care. research objective – patterns of longitudinal transitions experienced by individuals with dementia the prevalence of moves between care settings (home, hospital, ltc-facilities), or transitions, is high in the elderly , . a high number of transitions between care settings poses a serious challenge to continuity of care and the safety of the patient as evidenced by medication errors, quality deficiencies, preventable hospital readmissions and increased risk of mortality – . for extremely vulnerable individuals with dementia, safety challenges are compounded due to their disorientation , . guidelines for good dementia care stress the need for continuity and familiar environments which cannot be consistent with a high number of transitions , , , . a few studies have begun to examine transitions, describing the dynamic movement of seniors with dementia , . however, these studies are often over short periods of time with small cohorts and none examine the factors that contribute to these transitions. the objective of this study was to examine transitions experienced longitudinally to establish patterns that can be used to identify points of care when transitions are highest and the factors that contribute to those transitions to help assess the relationship between receipt of care and outcomes. research question a: what is the rate of transitions experienced over the study period and what are the points of care during which transitions are highest? research question b: are there individuals who consistently experienced a high number of transitions and if so what are their characteristics? research question c: what are the types of transitions experienced and what factors influence these transitions? research question d: what factors influence the number of transitions during the peak points of care and overall? hypothesis: i) the number of transitions experienced will be higher at the point of diagnosis and at the end-of-life compared to the time period after diagnosis and before their end-of-life. ii) the individuals who consistently experience a high number of transitions will have a high number of co-morbidities in addition to dementia and behavioural symptoms of dementia compared to those with a low number of transitions. iii) hospitalizations will drive transitions, but a large proportion of the cohort will also move to ltc. age, morbidity and behavioural symptoms will be the factors associated with hospitalizations or a move to ltc. the lack of a caregiver will be significantly associated with a move to ltc but not hospitalizations. iv) the factors associated with a higher number of transitions will be age, gender (male), morbidity, behavioural symptoms of dementia and the lack of a caregiver both during the peak points and overall. research objective – association of guideline-consistent dementia and high quality primary care received with transitions experienced by individuals with dementia the higher the number of transitions experienced, the higher the risk of morbidity and mortality due to medication errors, poor communication, adverse drug interactions and avoidable re-hospitalizations . the clinical trajectories of individuals with dementia have been well-documented and the care needs of these patients should be anticipated by primary care doctors which would minimize the number of transitions experienced. the chronic nature of dementia requires longitudinal care that provides accessibility, care coordination and continuity in order to meet the ongoing biopsychosocial needs of people with a primary diagnosis of dementia, which are also the facets of high performing primary care (boustani, sachs, & callahan, ; boustani, schubert, et al., ; chodosh et al, ). there is good evidence for the benefits of accessibility, continuity of care and coordination, all of which are key features of high quality primary care. family physicians are best positioned to ensure effective care coordination which has been shown to be associated with better outcomes – . however, many of these studies have been conducted in adults and young children but not in elderly populations and particularly not in vulnerable elderly populations such as those with dementia . as well, guideline-consistent dementia care is thought to be associated with better outcomes, though barriers to implementing these guidelines indicate not enough studies demonstrating this association . my final objective therefore is to examine the association between receipt of guideline-consistent dementia care and/or high quality primary care and the number of transitions experienced by individuals with dementia. research question a: is receipt of guideline-consistent dementia care in the year of diagnosis associated with the number of transitions the patient experiences in that year? research question b: is receipt of high quality primary care associated with the number of transitions the patient experiences in the year in which dementia is first diagnosed? hypothesis: i) holding all else constant, receipt of dementia care that is consistent with guidelines, and appropriate high quality primary care that encompasses continuity of care and coordination will contribute to fewer transitions. ii) receipt of guideline-consistent dementia care will be associated with receiving high quality primary care as measured by continuity of care. . thesis roadmap this thesis includes chapters in total. chapter (which you are currently reading) serves as a preamble, providing an executive overview of the thesis and the main objectives examined. in chapter , i provide a literature review relevant to my work. i define dementia and describe its impact on afflicted patients, those immediately surrounding them, and the societies and communities in which they are embedded. i then explore the care that patients with dementia receive within and outside the primary care context, particularly examining the role of guidelines in defining what is considered good dementia care. i provide an overview of variations in dementia care (which is explored in more detail as part of a systematic review in chapter ) prior to describing the conceptual framework designed to guide and inform the analytic work of this thesis. following this, i describe the current literature on transitions and their impact on patients. chapter is a systematic review of the relevant literature on measures of dementia care processes and physician practice patterns in the context of providing guideline-consistent dementia care. the review highlights significant differences in dementia care practice patterns indicative of inconsistent care received by patients with dementia, but also the limitations in the study methods employed, clarifying the need to examine, at a population-level, the differences in dementia care received by patients and the patient characteristics associated with those differences. chapter provides a description of my research design, data sources and methods of analysis. it contains a brief history and description of the use of administrative data in research and outlines in detail the linked administrative datasets utilized, variable definitions and operationalized. chapter describes my attempt to fill the gap in knowledge identified through the systematic review in chapter . it is a population-level analysis examining the receipt of guideline-consistent dementia care in bc during the first year of diagnosis. i describe the proportions of individuals who receive guideline-consistent dementia care, variations in care experienced and the patient characteristics that influence them. chapter descriptively assesses transitions experienced by patients with dementia from the year of diagnosis to a decade later or end-of-life. i explore patterns and types of transitions, identify points of care when transitions are highest as well as the demographic factors that influence these transitions. chapter , the final empirical chapter of my thesis contains a study that examines if there is an association between the nature of guideline-consistent dementia care patients receive at initial diagnosis, high quality primary care and the number of transitions experienced. chapter is the concluding chapter to my thesis which summarizes my results, situates those results as contributions to the field, and makes recommendations for policy, practice and future research. chapter - background & literature review . what is dementia? dementia is an umbrella term that applies to a class of disorders characterized by memory loss and affecting higher brain function as the brain deteriorates . it can be chronic or progressive in older adults, reversible (sometimes as a symptom of an illness which when treated, reverses) or irreversible. the irreversible dementias include vascular dementia, frontotemporal dementia, lewy body dementia, creutzfeldt-jakob disease and the most common, alzheimer’s disease (ad). worldwide, . million people were estimated to be living with dementia in with that number doubling every twenty years . the highest prevalence of dementia is in china, and the majority ( . %) of all people with dementia live in developing countries . in dr. alois alzheimer presented the clinical and neuropathological features of “[a]n unusual illness of the cerebral cortex” seen in a -year old woman he had observed for five years in a frankfurt asylum . the disease that bears his name is now the most common form of dementia (accounting for - % of all cases), with an exponential increase in incidence in those aged and over in developed countries . alzheimer’s disease can be either sporadic or familial. familial ad is an autosomal dominant disorder with the age of onset generally before age , however this is a rare form with a low prevalence of . % . in the sporadic form, which is the most common, the apolipoprotein e allele has been shown to contribute most of the genetic risk. the key clinical symptom is progressive memory loss, and two distinct neuro-pathological features: extracellular plaque deposits and neurofibrillary tangles. over one hundred years after its identification, the cause(s) of ad are still debated and a definitive diagnosis of ad can still only be made post-mortem. vascular dementia is the second most common form of dementia in the elderly and is usually a result of a series of small, unnoticed strokes, often co-existing with ad. it is characterized by either acute onset (for a large stroke) or a step-wise progression of cognitive impairment . often, though, patients present as mixed vascular and ad dementia. other dementias include frontotemporal dementia (including pick’s disease), lewy body dementia, creutzfeldt-jacob disease and dementia that occurs with chronic neurodegenerative diseases such as huntington’s disease, parkinson’s disease and multiple sclerosis which have the same gradual progression of cognitive decline as ad , . early-stage dementia for the two most common forms presents as deteriorating memory and a decline in verbal fluency . other common symptoms include aphasia (language disorder), apraxia (inability to articulate thoughts or physically execute learned movement), agnosia (inability to recognize objects), deterioration of higher cortical function (confusion, disorientation) and behavioural disturbances (depression, agitation, delusion). dementia is diagnosed when these symptoms progress to the point where they affect and individual’s ability to care for themselves . a definitive physiologic-based diagnosis of dementia can still only be made post-mortem by neuropathology. however, an accurate functional diagnosis can be made through a combination of clinical evaluation, cognitive screening, laboratory testing and structural imaging , . canadian consensus guidelines outline three conceptual components to the diagnostic process: ) the clinical diagnosis, ) searching for the potential cause and ) identifying treatable comorbid conditions or factors that may by contributing to the dementia . the clinical diagnosis is based on the patient’s history, collateral history from a family member or caregiver (without the patient present), a physical examination and a cognitive assessment. the patient’s history would indicate the cadence of the illness and other potential risk factors or causes which can be confirmed by the collateral history from the family member. for example, a gradual onset is often indicative of ad while a step-wise progression is more consistent with vascular dementia. alcohol abuse may be a cause for dementia and a family history of dementia is considered a risk factor. the physical examination would be conducted to search for specific signs such as a possible stroke. finally, cognitive function can be tested using any number of validated cognitive tests, all of which provide an indication of the severity of memory and cognitive loss. once the presence of dementia is established, the physician would search for a specific cause, first by ruling out other medical and potentially reversible reasons for dementia using further clinical evaluation, laboratory testing and imaging. for example, renal failure, a brain tumor or subdural hemorrhages can present as memory loss but are treatable and easily identified via laboratory testing and imaging. as well, individuals with dementia are at risk for delirium and depression, both of which may be further explored by the physician. a combination of these techniques can allow for an accurate clinical diagnosis of dementia, however the challenges of making this diagnosis should not be underestimated given the range of symptoms and confounding factors present in patients. a diagnosis of dementia is recorded in the patient’s record, but also in diagnostic codes that physicians use to bill for their services. those diagnostic codes are made up of a united nations’ sponsored standard classification system used by the world health organization and adopted internationally to classify diseases as well as more nuanced symptoms, signs, abnormal findings and external causes of injury known as the international classification of diseases and related health problems (icd) . the system provides a means of mapping health conditions under general categories with variations of the condition assigned by codes that can (in its most recent version) be up to six characters long. it enables a comparability in the classification, storage and retrieval of health data and statistics across jurisdictions and over time, and is used for compiling morbidity data, mortality data, as part of reimbursement systems, and as an input to resource allocation decisions . the icd is periodically revised. administrative data in bc include both the th (icd- ) and th (icd- ) revisions of the system . the th revision of the icd codes involved a functional change in structure and was not a simple updating. this resulted in more specificity of information conveyed through the codes, an increase in character length to allow the ability to add more codes and fuller code titles to better reflect medical advances in knowledge . there are several codes that capture dementia in both the icd and revisions (table . and . ). table . - international classification of disease codes related to dementia, version icd version code descriptor icd- . senile dementia uncomplicated icd- . senile dementia with delusions or depressive features icd- . senile dementia with delirium icd- . arteriosclerotic dementia icd- . dementia in conditions classified elsewhere icd- . alzheimer disease icd- . , . , . , . , . , . , . other cerebral degenerations icd- senility without mention of psychosis table . - international classification of disease codes related to dementia, version icd version code descriptor icd- f dementia in alzheimer’s disease icd- f vascular dementia icd- f dementia in other diseases icd- f unspecified dementia icd- g alzheimer’s disease . the social and financial impact of dementia the first of the largest recent canadian birth cohort – the baby boomers - turned in , and by the year canada will have more individuals aged and older than individuals under years of age . dementia is one of the most significant causes of disability among canadians aged and older. it is projected that by nearly . million canadians ( . % of the canadian population) will be living with dementia . the nature of dementia means that as it progresses, individuals require increased help with day-to-day adls and social support. this additional responsibility usually falls to an informal caregiver who is often a spouse or adult child. caregivers of patients with dementia dedicate on average hours per week providing care and managing treatment while also bearing financial costs that are both direct (such as home support or therapy) and indirect (such as lost income) in order to spend time assisting patients . the social consequences of dementia therefore affect both the patient and the caregiver(s). unlike other chronic diseases, dementia affects cognitive function as opposed to physical function. because of this, less is known about the inner needs and experiences of individuals with dementia as they become unable to express themselves verbally. the literature reviewed in the next chapter reveals that patients with early stage dementia describe a loss of control and self-identity, as well as a range of emotions including anger, fear, shame, frustration and stigmatization . many attempt to continue their lives as best they can after the diagnosis, but feel isolated socially and by their healthcare professionals. they expect suitable individual care from health professionals who have the knowledge to meet their needs at the different stages of the disease, but express frustration at their needs being overlooked or misunderstood, and at no longer being treated as accountable adults . social integration, which is emphasized in the care of younger adults with cognitive impairment, is often replaced with an emphasis on safety and efficiency when it comes to seniors, with the implication of reduced freedom or autonomy . the world health report global burden of disease estimates that dementia accounts for % of total years spent with a disability in individuals over the age of . this is more than all cancers, stroke or cardiovascular disease combined . informal caregivers of individuals with dementia describe feelings of isolation, anger, limited social support and feeling overwhelmed in addition to physical and psychological distress . caregivers of individuals with dementia have % more physician visits, % more prescribed medications, % higher mortality risk, poorer self-rated health and a higher incidence of depression and anxiety compared to matched non-caregivers . unsurprisingly, the leading reason for institutionalization of seniors with dementia is caregiver distress . the annual cost of healthcare for a person with dementia is estimated to be approximately three times that of a comparable person without dementia (accounting for direct medical and non-medical costs) – . costs additionally increase dramatically with increased disease severity . half of all cost is associated with hospitalizations (including for potentially preventable ambulatory-care sensitive conditions) , . while there is some variation in cost estimates associated with study design (the costs emerging from the more common cross-sectional designs are higher than those from longitudinal designs , the cumulative economic costs of dementia are incontestably substantial -- projections for canada as high as $ billion by have been reported . in short, dementia represents a clear and present danger for all unprepared health care systems. . care for dementia in the primary care setting the care of patients with dementia in the primary care setting is complex. dementias often go un- or under-diagnosed in primary care, with some estimating as many as two-thirds of patients with dementia not being identified , , . most studies indicate that patients with dementia have a higher burden of co-morbidity than comparable controls, though there is still some debate around this in the literature , . patients with dementia who also have co-morbidities often require a higher level of care because of difficulties with communication and management . this is complicated by multiple prescriptions to manage these co-morbidities in addition to psychotropic drugs for behavioural and psychological symptoms of dementia. drug interactions can result in higher use of other parts of the healthcare system . the interaction of cognitive, behavioural and functional symptoms of dementia leads to a decreased quality of life for the patient, and often, for (particularly informal) caregivers as well . in bc, as in many other jurisdictions, primary care doctors are the first point of health care system contact for patients or family members who suspect a cognitive problem. primary care physicians therefore are in the unique position to make the diagnosis of dementia and to set in motion decisions about clinical care, guided by well-established dementia care guidelines (discussed in more detail in section . ) , , . the primary care physician needs to first provide an accurate, and preferably early, diagnosis. they then, more importantly, need to provide long-term management of dementia in the context of additional co-morbidities . current dementia care also recognizes the need for counselling and frequent monitoring of the health status of both the patient and the caregiver (regardless of whether the caregiver is a patient of the physician) as informal caregivers play such an essential role in longitudinal dementia care . the initial diagnosis, counselling and management of symptoms fall within what is considered ‘dementia care’ as outlined by guidelines (see section . ) and ideally occur within the first year of diagnosis. however, as previously noted, dementia is a chronic, progressive disease and individuals with dementia often have a high burden of co-morbidity requiring physicians to provide longitudinal primary care to manage the dementia in the context of those co-morbidities. high quality primary care contributes to better outcomes for patients including better management of chronic conditions, fewer preventable hospitalizations, shorter lengths of stay, reduced use of emergency rooms and reduced risk of mortality . it has been defined as having four main features: first point of access for each new need; longitudinal person-focused (not disease-focused) care; coordination of care provided in other settings or by other practitioners; and comprehensive care that addresses most health needs . while less is known about the association of receipt of high quality primary care with better outcomes of care specifically for people with dementia, it is increasingly clear that in order to meet the ongoing biopsychosocial needs of people with dementia, particularly in the context of co-morbidities, all the facets of high quality primary care as defined by starfield will need to be addressed , , . the complex range of cognitive, social and functional problems involved with dementia often makes it difficult for primary care physicians to manage on their own. the participation of physicians in multidisciplinary professional groups is recommended, often involving a social worker, geriatric psychiatrist and nurse case manager to ensure effective care coordination and to provide support to the patient and caregiver . physicians are also an important source of referral to home and community services. while, it would be ideal for patients to learn of these support services from physicians during their visit, awareness and outreach have increased so that referrals can now come from nurses, social workers, family members or the dementia patients themselves . all in all, primary care physicians are a pivotal hub. the literature however, also indicates several barriers to practice. busy primary care physicians have expressed concern about the lack of resources, expertise and time to provide the level of dementia care required resulting in delayed recognition of dementia and adverse outcomes for the patient and their caregivers . the complexity and challenges associated with behavioural symptoms that accompany dementia are particularly difficult challenges for physicians . finally, despite a high degree of accuracy when dementia diagnostic guidelines are applied, physicians often do not change their practice behaviour to align with widely available guidelines for dementia care , . . overview of services outside primary care there are a broad range of health and social services available for all seniors that dementia patients and their families may access beyond the standard set of services offered by physicians and hospitals. patients with dementia generally need both clinical and social services to support them in their longitudinal care. while the primary care physician is often the first contact at the diagnosis of alzheimer’s disease and other dementias, dementia-specific home and community support services are available and have grown over the years. in bc, access to other publicly-funded services is mediated through an assessment process . as noted, referrals for assessment can come from a variety of sources. once a referral is made, there is a formal process by which the individual’s physical, mental and functional state is evaluated, along with an assessment of the adequacy of informal supports. all of this information is used to determine the amount, intensity and duration of care individuals are eligible to receive through the public health care system – . publicly-funded services may still have a provider pay component, which is based on one’s ability to pay. individuals of course also have the option either of adding to these publicly funded services with additional care, or to forego public services entirely . patients may have several ‘episodes of care’ where they move in and out of the system as needed after their initial assessment, but many older adults become long term users as they become more medically frail . the publicly-funded services potentially available in bc fall into three broad categories: home services, community services and long-term care (ltc) services (figure . ). figure . – assessment and publicly-funded service options in bc home services include home nursing, occupational therapy, physical therapy, home support for adls and palliative care . community services range from respite care (provided at home or in the community or on a short-term basis at a facility), to adult day centres, specialized education and peer support programs run by health organizations and local chapters of the alzheimer’s society. use and review of these services are still sparse, though several randomized control trials have demonstrated their efficacy in specific settings , . if adults with dementia are no longer able to live safely in the community or require a higher level of care than is possible with home services, assisted living/supportive housing and ltc/residential care are available. . . home and community care in british columbia remaining in the community for as long as is feasible is considered the best possible option both by people with dementia and their caregivers , , . the majority of older adults prefer to continue living independently in their own homes, though a diagnosis of dementia can eventually eliminate this possibility due to safety concerns. home care as well as other community-based services provide a means for older adults with dementia (and their caregivers) to extend their length of stay in the community by managing their health conditions at home and assisting with adls such as help with bathing and preparing meals . like many provinces in canada, and consistent with the wishes of individuals and their families, having seniors remain in the community for as long as possible has been a priority for bc . recent analyses, however, have demonstrated that despite this, access to and use of home and community care (hcc) services have decreased over time for a variety of reasons including policy changes and shifts in the demographic of seniors who might need home care , – . the literature surrounding the cost of home care has also seen a shift. while home care was previously unequivocally considered more cost-effective for older adults, current studies indicate that this is only the case under specific circumstances, as informal care giving costs are often not adequately accounted for (e.g. loss of caregiver income, caregiver stress and healthcare utilization) , – . regardless, remaining in the community is overwhelmingly what most canadian seniors ( % of those surveyed) prefer , . for individuals with dementia, remaining in the community as long as possible has a number of benefits. transitioning to a new environment such as a ltc facility is stressful for older adults because of the nature of the change and the association of loss , . home is associated with continuity, autonomy, competency, privacy and control – . this is doubly so for individuals with dementia who feel that the home environment provides a sense of personhood and normalcy , , . in the face of cognitive and functional disconnection and losses faced through dementia, a familiar environment and routine is useful in the management of dementia care and can be provided with the assistance of home and community care services . for many informal caregivers, being able to provide care to their loved ones at home allows them to ensure that these individuals are receiving individualized care that is appropriate and meets their needs and standards . given that individuals with dementia often have multiple co-morbidities, primary care physicians who provide early intervention with appropriate monitoring and management of the multiple conditions may be able to help their patients remain in the community longer . additionally, monitoring of caregiver well-being and assistance in mobilizing social support by primary care physicians can help pre-empt and relieve some of the caregiver stress that is often the trigger for institutionalization , . . . long-term care in british columbia home-based services can help people with dementia age in place, but eventually it often becomes very difficult for informal caregivers to manage care for people with dementia at home, particularly during the later stages of the disease or when behavioural symptoms become unmanageable. at that point a move to alternative forms of housing that provide additional supports becomes necessary . in bc the housing menu is somewhat more limited for those with dementia relative to seniors without dementia (figure . ). assisted living, which is described as a residence that “offers housing, hospitality services and personal assistance to adults who can live independently but require regular help with daily activities” is a form of care between home care and ltc, but is considered unsuitable for people with moderate to more advanced dementia since eligibility criteria in bc (as with most other provinces and states) requires that individuals be able to direct their own care , . therefore, individuals in assisted living whose dementia makes this impossible, face a second transition to ltc --often the last, and only option , . but even at this level of care, most ltc facilities as they are currently resourced, are inadequately equipped for dementia patients. dementia patients are often sequestered in separate or special secured wings with different resourcing within the facility because they require more support than the average ltc resident for any given level of other disabilities or limitations. while individuals with dementia undeniably require additional support, current literature suggests that more home-like environments are better-suited for individuals with dementia (as well as for all older adults living in ltc facilities). this means not just ‘home-like attributes’ implemented in the form of decor and the naming of facilities, but social relational care practices as well that are meaningful to the persons with dementia, their families and staff . this idea is being developed in some ltc facilities in bc based on several frameworks , but has been extended further by others. the dementia village in the netherlands and beatitudes campus in arizona, usa are two such examples. they feature open environments that encourage patients with dementia to be autonomous, focuses on individuality and relationships while maintaining a home-like environment, models that bc is using as templates , . residents of ltc facilities surveyed regarding their preferences have indicated support for this sort of social integration as opposed to an over-emphasis on safety and efficiency . unfortunately, many of the facilities in north america that provide specialized dementia care still have institutionalized settings and care structures. the housing landscape has yet to shift to provide alternate options for dementia patients, though several new models have been developed in north america and are being evaluated – . for now, the current, traditional, institution-like ltc facility remains the prevailing housing option. primary care experiences are also different once a move to a ltc facility is made. many ltc facilities have in-house physicians or specific family physicians responsible for the care of the majority of the facility’s ltc residents. in these cases, the patient- physician relationship developed while a patient lives in the community often ends when the patient becomes a ltc resident; responsibility for primary care is transferred to the physician practicing at the ltc facility to which the patient has been moved . in bc, only % of general practitioners provide residential care services with an % increase in the average annual number of residential care visits over the past ten years ( / - / ) . indeed, there has been a % drop in physicians providing residential care services since / despite a % increase in the number of residential care patients and a % increase in the number of general physicians over the past ten years . this is reflected in the declining comprehensiveness of primary care. physicians practice in fewer care settings and have a more narrow scope of care – . a recent study demonstrated that the care of % of ltc residents in ontario was accounted for by only % of family physicians with a mean of residents per physician . a similar concentration of residential care services by a small proportion of physicians is seen in bc, though some local health authorities (such as cowichan and prince george) do not appear to have this trend . this trend toward more concentrated residential care services plays havoc with continuity of care and may potentially also affect quality of care (as suggested by the high rates of inappropriate prescribing amongst this population) , . . american and canadian guidelines for dementia care over the past thirty years, there have been several position papers and guidelines published in the us and canada on evaluating people suspected of having dementia and providing subsequent dementia care. these range from lengthy, detailed recommendations based on consensus expert opinion and/or literature review(s), , , – to short user-friendly flowcharts with brief references – . their intent is to provide guidance on the care of individuals with dementia, and they are aimed mainly at primary care physicians who are the initial point of contact for these individuals. the guidelines have undergone significant evolutions since first published in the s. the more recent offerings are based on a better understanding of the long-term social implications of dementia, not just for the patients but also for those who care for them. canada first produced national guidelines in through a national consensus conference bringing together experts in the field . at the time, the focus of the guideline was on accurate diagnosis of dementia with no attention to treatment or management following that diagnosis. this consensus conference was subsequently repeated in , and more recently in . the resulting guidelines (with those from the conference still in process) now include treatment and management recommendations. the result of the rd consensus conference (in ) was the dissemination of a series of six papers: risk factors and prevention , investigating and diagnosing dementia , defining and diagnosing mild cognitive impairment , managing mild and moderate dementia , pharmacological and non-pharmacological therapy and finally, managing severe dementia . these contained recommendations that reached strong consensus with the experts. three of these papers are of particular interest with regard to dementia care guidelines. the second paper, on the investigation and diagnosis of dementia, provides explicit detail for clinical diagnosis while contextualizing the difficulties in differentiating the dementias and severity levels . using a vignette, it outlines a detailed clinical evaluation including a history from the patient (focused on the cadence of the illness, vascular risk factors and other risk factors), collateral history from an informant, a physical examination and a formal cognitive test. recommendations on core laboratory tests remain relatively unchanged from the previous guidelines (complete blood count, thyroid stimulating hormone (tsh), serum calcium, electrolytes, fasting glucose), with the addition of recommendations for b measures in all older adults. testing of red blood cell folate and serum folic acid levels is now no longer necessary since the introduction of folic acid into canadian grain in . recommendations for neuroimaging (primarily computed tomography and magnetic resonance imaging) are still made; however, the committee determined that there is insufficient evidence to recommend the routine use of functional imaging (magnetic resonance spectroscopy), collection of biomarkers or neuropsychological testing. more importantly, the guidelines make a special recommendation that the results of tests, diagnosis and management be conducted over a series of visits spanning several weeks in order to provide appropriate time to accurately identify dementia and prepare the patient for a diagnosis. the committee concludes with the identification of what members considered the most important current knowledge gap -- what is known about diagnosis and what is actually practiced in a general physician’s office. the latter is a specific focus of this thesis. the fourth paper in the series, on approaches to management of mild to moderate dementia, is of importance because of its guidance in managing a long-term progressive disease like dementia with which most family physicians have had very limited experience . as with previous papers, a vignette is used as an example of how a case can be approached. fifteen bulleted points highlight important recommendations that touch on disclosure, need for referrals to specialists (because of uncertainty about diagnosis, request for second opinion, need for assistance with pharmacotherapy, expressed interest in research studies, and/or inability to appropriately manage patient), assessment of safety risks (driving, financials, activities of daily living etc), referral to the local alzheimer’s society chapter and community resources and, finally, managing and responding to therapy, functional problems, behavioural symptoms of dementia and co-morbidities. while the guidelines warn physicians that the needs of the patient and caregiver evolve and will require monitoring for increasing cognitive, functional and behavioural challenges, they do not provide detail on the frequency with which a patient should be monitored or the psychosocial counselling that should be provided. the guidelines also mention the importance of caregivers in the management of patients with dementia; the subject of caregiver support, while mentioned, is rather cursorily covered. the focus is on meeting with the caregiver regularly to assess the status of the patient with dementia, with a particular focus on behaviour, and on finding ways to deal with distressing problems regarding the patient. multi-component interventions such as providing education, counselling, support and respite for caregivers is stated with no supporting details. in the fifth paper regarding pharmacological and non-pharmacological interventions, no non-pharmacological interventions are recommended outside of physical exercise. details on pharmacological interventions are provided, in particular the effectiveness, selection and side effects of acetyl-cholinesterase inhibitors . unlike canada, the us has guidelines published by several different national working groups and organizations which appear to work separately as opposed to through a consensus process. for example, ‘the national institute on aging and the alzheimer’s association workgroup’ (commonly referred to as nincds-adrda), first published guidelines in july . these were updated in , and both the original and updated versions place explicit emphasis on clinical criteria , . they propose different terminology for the classification of what they term probable ad dementia, possible ad dementia and probable or possible ad dementia with evidence of ad pathophysiology. ‘the work group on alzheimer’s disease and other dementias’ published a comprehensive guideline for diagnosis and management of dementia which stressed the evolving complexity and required comprehensiveness of treating dementia . ‘the quality standards subcommittee of the american academy of neurology’ published three evidence-based reviews: early detection of dementia: mild cognitive impairment , diagnosis of dementia and management of dementia . these were abstracted into guidelines by the american geriatric society clinical practice committee in . several other groups have released position papers regarding clinical care for patients with dementia, notably the ‘american association of geriatric psychiatry’; however these were not guidelines and therefore were not reviewed . as outlined above, there is a deluge of national guidelines available on dementia care, particularly in the us. almost all the guidelines focus exclusively on the initial diagnostic process which the literature has identified as a hurdle due to the low diagnosis and treatment rate, particularly in the primary care setting (it is estimated that less than % of individuals with alzheimer’s disease are diagnosed in canada) . the guidelines across canada and the us appear relatively complementary at least with regard to the techniques and diagnostic processes, while differing on the classification terminology. unlike the us guidelines, the canadian guidelines stress the diagnosis of a more recently identified symptomatic, precursor phase to dementia, mild cognitive impairment . this is perhaps because the development of the cognitive test used to identify mild cognitive impairment was pioneered in canada . interestingly, in contrast to canadian guidelines, none of the us guidelines reviewed make reference to specialist referrals or the conditions under which these referrals should be made. this may be a reflection of the overall differences in the two healthcare systems, and in particular the fact that patients in the u.s. are free to go to a specialist without a primary care referral, so that primary care physicians play less of a quarterbacking role south of the border. . . dementia care guidelines in british columbia for practitioners in canada, both the us and canadian guidelines are well disseminated; however, most are written as lengthy research reports which are perhaps daunting for busy practitioners with limited time. this may have prompted the development of bc-specific dementia care guidelines which are more succinct, easy to peruse and come with a decision support tool , . additionally, bc did not cover acetyl-cholinesterase inhibitors (achi) until the launch of the alzheimer’s disease therapy initiative in ; this may have also required the need for guidelines that take this context into consideration . the bc guidelines were developed by a working group independent of the canadian consensus conference working group and reflect province-specific resource availability and medical coverage . the bc guidelines indicate that symptoms of cognitive impairment should be suspected when there is a history that suggests cognitive decline (emerging cognitive problems). this history might be derived either from direct observation or reports from the individual’s social network. after a comprehensive medical review and appropriate testing (physical exam, laboratory tests, neuroimaging and administration of the standardized mini-mental examination) a working diagnosis can be arrived at. with disclosure of that initial (or suspected) diagnosis of dementia, physicians should have follow-up visits at least every six months with the patient and their caregiver in which needs, concerns, safety planning, finances and education should be discussed. physicians should also be periodically reassessing their patients and establishing a relationship with them and their family (and caregiver). outside of managing other co-morbidities and counselling, a trial of achis is recommended for mild to moderate dementia, but patients using these therapies must be monitored closely and frequently, particularly within the first three to six months. referral to a specialist (e.g. geriatric psychiatrists) is recommended when diagnosis or management is problematic or uncertain, when patients or family members request a referral, or when management issues are difficult. finally, physicians are encouraged to be aware of neglect and abuse, and to support patients to function as independently as possible. acetyl-cholinesterase inhibitors were not covered under b.c.’s pharmacare program until the introduction of the alzheimer’s disease therapy initiative in october . . through this initiative, patients diagnosed with mild to moderate dementia were eligible for coverage of their achi medication (except for memantine, a different class of drug more recently introduced to the market for moderate to severe dementia) as long as they enrolled in the program. the alzheimer’s disease therapy initiative was designed primarily as a research study to address what the bc ministry of health saw as a lack of clinical evidence for the effects of achis . physicians were required to assess patients’ cognitive status every six months for the patients’ continued enrollment and therefore coverage of their medication . the study’s participant recruitment was completed in october and the study reports that over , patients are enrolled and will continue to receive coverage while in the study. in , the general practice incentive program was introduced in bc . the program is meant to support and compensate general practice physicians for time spent on providing guideline-consistent care in several areas including chronic care and mental health. the mental health initiative provides several new billing codes to encourage physicians to take more time in their assessment and support of patients with mental health illnesses, including dementia, as well as to participate in broader care teams while accepting responsibility for providing longitudinal, coordinated care for the patient . while the mental health initiative attempts to address many of the facets of good dementia care by incentivizing physicians to take an in-depth record of the patient’s history, conduct appropriate memory assessments and provide ongoing counselling, a recent report from the ministry of health demonstrates very slow uptake of these incentives . billings for the specific codes (g – gp mental health planning fee, g to – mental health management fee for ages to , to , +) have increased as have the expenditures on these services, however the number of services billed indicates that these codes are not being consistently used by physicians. there is also no reliable way of determining whether the services described by the fee items are actually provided and whether physician practices have changed due to these codes or whether services are being provided but being billed in more traditional ways. for the purposes of this thesis it was not possible to assess more specific physicians’ dementia care practice patterns using these mental health initiative billing codes and they will be excluded from any analysis. . variations in dementia care variations in the use of clinical healthcare services have been reported in just about any area examined – even after controlling for patient characteristics. in dementia care, there is a large and growing literature available on variations in pharmaceutical prescription use by individuals with dementia , , – ; however less is known about variations in the use of other dementia-care-related clinical services such as cognitive assessments, counselling, referrals to specialists or community services, frequency of prescriptions, monitoring, etc. these services are recommended for providing appropriate dementia care and are described at length in dementia care guidelines (as detailed in section . above). the use of guidelines have been shown to reduce variation and maintain, or even improve quality of care . therefore large variations in the use of these clinical services would be an indication of inconsistent care across the province which could be associated with differences in care outcomes. variations in clinical service use by patients with dementia are often examined at the individual-level. of these, only a handful of studies have examined a fuller scope of clinical dementia care services (though they are self-reported surveys), and comparing across these studies reveals significant variation in the clinical services received by dementia patients , , , , . for example, chodosh et al. developed dementia care processes based on available dementia care guidelines. the types of processes were comprehensive, ranging from assessments (cognitive status, activities of daily living, behavioural problems etc.), treatments (care plans, advise to caregivers, implementing non-pharmacological approaches, documenting medication side effects and outcomes etc.), to education/support and safety, all of which are highly recommended for receiving good dementia care. adherence to the processes ranged from – % with of the processes scoring below % adherence. in fact, the lowest percentages of patients to receive specific dementia care processes were in the assessment and treatment category. however, almost % of patients were referred to a community care support program. this is in contrast to reuben et al. who found higher adherence to some assessment processes such as assessing cognition ( % of patients) but again, low adherence in assessing functional status ( % of patients), treatment processes ( %) and referrals to community support programs ( % of patients). similarly, in one of the earlier studies that examined the use of healthcare services by individuals with dementia, callahan et al. demonstrated that less than % of patients received any neuroimaging a year prior to or after being screened for dementia and less than % received any diagnostic blood work to rule out reversible dementias. more interesting is that callahan et al. collated results from the patients’ short portable mental status questionnaire and found that % of patients with moderate to severe dementia had undocumented impairment as defined by the lack of a dementia diagnosis anywhere in the outpatient file. callahan’s results must be contextualized by the time of publication. in , dementia care guidelines were available, but awareness was still being built and stigmatization was very strong. this may help explain the very high percentage of undocumented impairment. regardless, the results from all these studies demonstrate widespread variation in dementia care clinical service use and low adherence to guidelines, both of which continue to persist to the present day. while understanding variations in dementia care and the impact on outcomes is necessary, understanding the factors that contribute to those variations is also important as they may be modifiable by the healthcare system. there are several possible explanations underlying these observed variations including system, provider or patient characteristics. physician practice patterns have been described previously as contributing to variations in other healthcare areas , – . in canada, there are , physicians all of whom individually make daily clinical decisions that lead to an average of $ . million worth of expenditures on health care services per year . physicians therefore direct a vast amount of clinical healthcare resources and physician practice style could contribute to variations in clinical healthcare services use by individuals with dementia. little research is available on physician practice patterns in dementia care despite a recent study in which % of seniors reported having a primary care physician and estimates that almost % of canadians years or older suffers from dementia . on this premise, a systematic review of the literature was conducted to better assess the current state of knowledge. this systematic review is presented in chapter . . conceptual framework there is no single pathway of care that individuals with dementia follow, but nearly all (if not all) journeys will include receipt of some clinical health services. the conceptual framework described here outlines the characteristics and clinical services that may shape care trajectories for patients with dementia. in my conceptual framework (figure . ), the horizontal arrow represents the aggregation of the factors that ultimately contribute to the primary outcome being measured, transitions. the characteristics on the left (green boxes: physician, individual and system characteristics) are measurable characteristics that contribute both warranted and unwarranted variations to the healthcare activities that are at the core of the framework. not included in this framework are characteristics not measurable using administrative healthcare utilization data such as cultural beliefs, knowledge and attitude about health and care use which can also affect the type of care received . the central core of the framework contains the two key healthcare activities being measured, dementia care (based on processes of care outlined in best practice guidelines), and primary care (services provided beyond the services measured by dementia care). to the right is the primary outcome of interest, transitions experienced by individuals with dementia. in this framework, transitions can be driven by receipt or lack of dementia care or primary care. care provisions are driven by physician, individual and system characteristics. figure . – conceptual framework guiding the thesis physician characteristics: previous studies have indicated that physician age, speciality, practice location (rural/urban), number of years in practice and type of practice population (e.g. number of older patients and number of patients in practice with dementia) are predictors of the type of dementia care provided , . similar physician variables were also associated with the provision of full service family practice , therefore their inclusion in this framework. as physicians direct a wide range of clinical healthcare resources, their practice style will help shape trajectories of care for people with dementia, and will ultimately shape outcomes of care. these characteristics are depicted at the left hand side of the horizontal framework to indicate their contribution both to the clinical services as well as to the primary outcome. individual characteristics: the variables used to measure individual demographic characteristics are key predictors in the receipt/use of dementia and primary care as well as, ultimately, care outcomes. i anticipate that inclusion of these characteristics such as age, sex and neighbourhood socioeconomic status, will allow me to tease apart both warranted and unwarranted variation. another important characteristic is health status (this measure is described in detail in section . . . ). controlling for health status in a regression model assessing variation in clinical services is central to being able to interpret the magnitude and appropriateness of other variations which may be unrelated to patient need; it is critical for being able to differentiate warranted and unwarranted variations. as well, i measure for the presence of an informal caregiver, described in more detail in section . . . system characteristics: the supply of general physicians, specialists and hospitals in a region plays a central role in the type of care provided. for example, areas with fewer specialists per capita will require primary care physicians to take on a larger role in dementia care management for cases that might otherwise have been referred. as well, areas where patients may have difficulty accessing laboratory or imaging facilities may result in fewer laboratory and imaging tests being conducted for diagnostic purposes . bc is divided into five geographic health authorities (fraser, vancouver coastal, vancouver island, northern and interior). the fraser, vancouver coastal and vancouver island health authorities contain major urban centres and a higher per capita supply of specialists, general physicians and hospital beds. the influence of system capacity and other factors such as this constitute the “system” characteristics within the framework. the belief is that these factors will influence both the diagnostic and treatment/care trajectories of patients with dementia. dementia care: dementia-focused care will be defined and explored in detail in section . . of chapter and section . . of chapter , but briefly, it is care consistent with guidelines for the diagnosis and management of dementia. these clinical services are generally provided within the first two years of diagnosis and consist of services required for diagnosis (laboratory tests, imaging, physical examination), symptom management (pharmaceutical prescriptions), counselling immediately following the diagnosis and referrals to specialists if required. subsequent care falls within the primary care category with regard to longitudinal management and any other services outside of the ones mentioned. dementia care is a pivotal measure in this framework. receipt of guideline- consistent dementia care is thought to be associated with better outcomes for people with dementia. good dementia care emphasizes early diagnosis and management which can reduce the number of hospitalizations experienced contributing to a lower overall number of transitions. measuring any unwarranted variations in receipt of dementia care by individuals newly diagnosed with dementia can indicate inequality or poor quality care, hence its inclusion in the core of the conceptual framework, to be assessed as its own dimension as well as its association with outcomes. primary care: high quality primary care has been previously defined and will be measured by three characteristics, first contact with the patient, coordination and referrals as needed, and continuity of care as previously defined and described in further detail in section . . . high quality primary care has been shown to contribute to better outcomes for patients, including better management of chronic conditions, fewer preventable hospitalizations, shorter lengths of stay, reduced use of emergency rooms and reduced risk of mortality , . dementia is a chronic, progressive disease that patients and their caregivers live with for several years. in order to meet the longitudinal biopsychosocial needs for those patients over that time, particularly in the context of co-morbidities, provision of primary care plays a key role. primary care’s inclusion in the center of the conceptual framework captures the importance of these services with regard to longitudinal care for patients given that dementia care services are primarily provided in the diagnosis year. primary outcome: the final part of the framework suggests that the intensity and scope of primary care, and dementia-focused care will affect a critical aspect of a dementia patient’s life: the number and type of transitions experienced. the number of transitions will be examined in more detail in . . , but briefly, transitions are defined as a physical relocation from one place to another that involves at least one night’s stay. such transitions generally involve moves between home and a variety of care facilities, or between care facilities such as respite care, hospital and ltc. a high number of transitions in seniors diagnosed with dementia is particularly challenging due to the stress of multiple unfamiliar environments. in the conceptual framework, this outcome is shaped by the dementia care and primary care clinical service use as well as by individual, physician and system factors. good dementia care and primary care is expected to positively influence this outcome, resulting in fewer transitions. . primary outcome measure: transitions and consequences for the purposes of the research reported here, a transition is defined as a situation in which “an individual physically moves from one place to another and stays there for at least one night” . with an expanding and changing healthcare system, almost everyone will experience at least one transition during his or her lifetime. for many seniors, these transitions occur at various critical points during their trajectory of care, often several times between different care settings. age, gender and morbidity all affect the number and type of transition (this is particularly true during the last few years of life) , . transitions between care settings pose a serious challenge to the continuity of care and safety of the patient. care in multiple settings is often provided by physicians who do not have an ongoing relationship with the patient and are therefore unaware of their complete clinical or medication history . despite advances in technology, adoption of an accessible, universal electronic database that spans across care settings is not yet in sight and physicians continue to reduce their scope of practice, working primarily in siloed, single settings , . this lack of continuity of care has led to evidence of medication errors and quality deficiencies which pose significant threats to patient safety . a study examining patients discharged from hospitals found that half of adult patients experienced at least one error in medication continuity, diagnostic workup or test follow-up . other studies find evidence of high adverse event rates after discharge , with over half to % of events due to medication errors . in another study examining -day post-hospital care patterns, between and % of all care patterns were considered complicated and required re-admittance to higher intensity care settings three weeks after discharge . for patients experiencing a transition from hospital to home, many are also unprepared for the challenges of self-care responsibilities. . . transitions for seniors for seniors in particular, changes in health status can mean frequent transitions between care settings. in the us, one in six nursing home residents are hospitalized in any six month period and as many as % of elderly people have an acute care hospitalization just prior to their admission to a ltc facility , , . approximately % of seniors living in the community are hospitalized every year . these hospitalizations can be precipitated by a variety of events including acute infections, acute episodes of chronic illness and adverse events such as falls . four system issues have been identified as particularly problematic in hospitalized seniors: poor communication, preventable declines in health status, inadequate discharge planning and major gaps in care during transfers to and from hospitals . one study showed that greater than % of chronically ill older adults living in the community had medication errors while transitioning between hospital settings ; this is particularly problematic considering the high risk of polypharmacy in seniors , . another study demonstrated increased mortality risk associated with transitions . the most significant consequence of these transitions for seniors, however, is preventable hospital readmissions with as high as one fourth of all hospital readmissions of seniors believed to have been preventable . . . transitions for seniors with dementia the challenges in medication, quality and continuity of care that affect the safety of patients are compounded in dementia patients if no one is able to provide a verbal history of their care or if they do not have a caregiver who can assist in their transitions , . the stress of unfamiliar environments is also particularly disruptive for people with dementia for whom a stable environment is critical . this can lead to additional behavioural disruptions that may not be properly managed, trigger further transitions and can lead to a preventable decline in health status in addition to the adverse outcomes already experienced by seniors in transition . indeed, individuals with dementia are significantly more likely to be hospitalized for all cause and ambulatory care-sensitive conditions than non-dementia individuals , and experience a higher number of transitions during the last two years of life . dementia is a chronic and progressive disease with increasing intensity and need for care over time. the clinical trajectories of these diseases have been well-documented and the care needs of these patients should be anticipated by primary care doctors. guidelines for good dementia care stress the need for continuity and familiar environments which cannot be consistent with high numbers of transitions , , . family physicians are best positioned to support seniors to ensure effective care coordination. however, seniors often have limited contact with physicians, particularly once in a residential ltc facility , , while physicians have continued to reduce their scope of care to working primarily in one setting which often excludes ltc . there is good evidence for the benefits of continuity of care. studies have demonstrated that good continuity of care is associated with fewer emergency room visits , , fewer hospitalizations , – and avoidable hospitalizations , better preventative care , , better medication adherence, better physician recognition of medical problems , and greater patient satisfaction and communication . however, many of these studies have been conducted in adults and young children but not in elderly populations and particularly not in vulnerable elderly populations such as those with dementia . in summary, dementia is a common condition with increasing prevalence and significant implications both for the person with dementia and for his / her caregiver(s). good evidence exists for health care that can help with both the diagnosis and ongoing treatment of individuals with dementia. there is less existing evidence to help understand how well those guidelines and care practices are followed in the actual delivery of health care services, and what the implications might be for outcomes, most specifically transitions. this thesis is aimed at filling in some of these knowledge gaps. chapter – a systematic review of variations in dementia care physician practice patterns , . introduction in canada, primary care physicians are gatekeepers who are usually the first point of contact for people with dementia . current guidelines for dementia care recommend that in addition to providing a proper diagnosis, physicians develop a care program for the patient and their caregiver(s), provide accurate information on the progression of the disease, make referrals to local resources, and offer appropriate counseling on the psycho-social impact of the disease – , . physicians therefore direct a wide range of clinical healthcare resources. studies on physician practice patterns indicate variation in physician methodologies and responses regarding dementia care processes , . there is a substantial body of literature on physician prescription patterns with regard to dementia , – but in comparison, only a limited number of studies on other physician dementia care practice patterns. while pharmacological management is important, poor detection and general management means people with dementia may not receive appropriate psychosocial interventions, routine monitoring or the recommended multi-dimensional approach to dealing with increasing cognitive and functional challenges . best practice guidelines for dementia care have been established in the medical community for several decades. the use of best practice guidelines have been shown to a version of chapter has been published. sivananthan sn, puyat jh, mcgrail km. variations in self-reported practice among physicians providing clinical care to individuals with dementia: a systematic review. journal of american geriatrics, . :( ) - . copyright ( ) wiley. used with permission from publisher (john wiley and sons). reduce variation and maintain, or even improve quality of care , however there is no existing comprehensive systematic review focused on physician practice patterns associated with the care of people with dementia. it is important therefore to determine to what extent actual practice, as reported in the literature, is consistent with guideline-recommended care. my objective in this systematic review is as follows: research question : based on the current literature, to what extent is actual practice consistent with guideline recommended care? i hypothesize that there is wide variation in physician practice patterns with regard to provision of dementia care, particularly discretionary dementia care processes. . systematic review methods i used the centre for reviews and dissemination’s publication on guidance for undertaking reviews in health care to develop the structure of this systematic review, including the protocol and data extraction (see appendix a for study protocol). the method also meets the criteria outlined by the preferred reporting items for systematic reviews and meta-analyses (prisma) statement for systematic reviews . . . search strategy a search strategy was developed in consultation with a research librarian. only english language studies published as of march st , were included with no start date limitation. i was deliberately broad in my search strategy to ensure i captured all relevant studies. eligible studies met all of the following criteria: ) were experimental, quasi-experimental (pre-post studies, interrupted time-series) or observational (case control, cohort, cross-sectional) studies; ) presented original empirical results; ) presented results at a physician-level; ) measured physician care provided to seniors years or older diagnosed with dementia; ) included senile dementia, alzheimer’s disease or vascular dementia under the term “dementia” as either a primary or secondary diagnoses; ) measured any clinical service/intervention or combination of clinical services/interventions detailed as appropriate for dementia care management by national and international guidelines; – , and, ) measured actual services provided (vignette-based studies measuring behavioural intentions were excluded). studies focused exclusively on prescription patterns of achis, antipsychotics or psychotropic medications were excluded as this is a vast body of literature and requires a separate, specific review. studies that assessed dementia care processes in specialist practice settings only were also excluded as the practice patterns and patient demographics in these settings are thought to be very different from that of general practices. the databases searched were: web of knowledge, pubmed, science direct, medline, psychinfo, embase and google scholar. the search strategy was adapted to each database based on its thesaurus or medical subject headings. an individual search with each of the search terms was also conducted to ensure that no relevant citations were missed. for google scholar, only a preliminary search was conducted for the first results to source any key grey literature and determine whether all key citations were captured. references of key studies and all studies that met the inclusion criteria after the abstract review were also scanned. while peer-reviewed and grey literature was included in the original search, the final articles that met the inclusion criteria were all peer-reviewed. . . data collection and data extraction i conducted the literature search on april rd, . another reviewer (joseph puyat) and myself then conducted independent abstract and full-text reviews as outlined in the prisma group recommended flowchart (figure . ) . the two lists of eligible studies were compared at each round and disagreements resolved by discussion. studies were not eliminated on quality due to the limited number of eligible studies that met the inclusion criteria. for each eligible study, both reviewers independently extracted data. i developed the data extraction tool and it was tested on three studies prior to proceeding with the full data extraction. the following data items were obtained: study year; setting (nursing home or community); study location; associated health networks; study design; study purpose/research question; sample number; sample representativeness; validation of survey; physician specialty; patient population; physician characteristics; approach to screening; reports of diagnosis disclosure; memory test; imaging; blood work; medical prescriptions; non-pharmacological interventions; counselling; specialist referrals; community service referrals; and other. studies that conducted any form of regression or statistical analysis were noted and their model covariates included. i defined “dementia care processes” provided by physicians as diagnostic services (memory test, imaging, blood work), management (pharmacological and non- pharmacological interventions, counselling) and referrals (specialist referrals, community service referrals). i developed definitions for each of these in order to standardize the data for the studies that met the inclusion criteria. the definitions were grounded in consensus guidelines , , (except for mass screening for which there are no specific recommendations) however, when studies diverged in their measurements of the dementia processes (additional tests, techniques and frequency), the additional test and lowest frequency were included in the definition. these are as follows: mass screening – no guideline recommendations have yet been made regarding mass screening. study measurement included questioning > % of patients years and older in the physician’s practice about memory problems . disclosure – guidelines recommend a physician discloses suspected diagnosis to a patient and also to a family member when possible as soon as it is known , diagnostic services: diagnosis – the physician conducts a formal mental status or memory test to form an initial diagnosis and for staging of dementia. several tests are recommended by guidelines including the mini-mental state examination, kokmen short test of mental status, -minute screen, memory impairment screen, montréal cognitive assessment, the demtect, the general practitioner assessment of cognition and the behavioural neurology assessment short form , . study measurements included other mental status test such as the blessed information memory concentration test, short portable mental status questionnaire, washington university sdat screening battery, iowa screening battery for mental decline, and wechsler adult intelligence scale which were not guideline recommended but used as a measure for formal diagnosis by some of the studies . imaging – a computed tomography (ct) scan or magnetic resonance image (mri) of the brain is conducted , , blood work – guideline laboratory tests routinely ordered to determine the underlying cause of dementia or for rule-out of other causes including a complete blood count, tsh, serum calcium, electrolytes, fasting glucose, vitamin b levels and folate levels , . other laboratory tests measured by studies include chemical screening, sedimentation rate, test for metabolic disorder, urine analysis and heavy metal screening . management: intervention – all pharmaceutical interventions related to the treatment of dementia (donepazil, rivastigmine, galantamine, tacerine, and memantine). also includes prescriptions for behaviour and mood treatment such as antipsychotics, antidepressants and psychotropics. non-pharmacological interventions such as changes in adls, environmental or communication changes were also included as interventions , , . counselling – provide counselling to patients with dementia and family members regarding management and future planning. this includes financial planning, advanced directives, end-of-life planning, respite care/caregiver stress, driving risks, management of adls, a possible nursing home placement and general family counselling , . referrals: community service – referral to community services who assist patients and caregivers to cope with dementia. services include the alzheimer’s association, a support group, an adult day centre, home health agency, respite care, area agency on aging, social workers and recreational therapy , . specialist referral – referral to a geriatrician, neurologist, psychiatrist, geriatric psychiatrist, neuropsychologist or to a memory clinic for further management , . . . data analysis the unadjusted proportion of physicians who reported use of each dementia care process was either extracted, when available, or calculated, if possible. in cases where double counting would occur because physicians report use of more than one technique within a process (e.g. the use of more than one memory test), the technique with the highest reported proportion was extracted. . results through the initial search, , studies were identified. of this, , studies were excluded through a title review. some of the excluded studies were centered on caregiver practice patterns, others were qualitative studies, but the vast majority of excluded studies were focused on physician prescription patterns in relation to dementia care. for the full-text review, a kappa of . was reached indicating a formal inter-rater agreement close to complete agreement (kappa= ) (figure . ). after resolving differences in inclusion assessment through discussion and consensus, twelve primary quantitative research studies met the final inclusion criteria , , – , , , – . all the studies assessed actual services provided at a physician-level in patient populations years and older. fifty percent of the studies focused exclusively on primary care physicians encompassing general, internal and family medicine practitioners , , , , , (table . ). the other fifty percent of studies included primary care physicians as well as specialists who were primarily geriatricians, as well as neurologists and psychiatrists , , , , , . all twelve studies used cross-sectional surveys, ten of which were either postal or web-based self-administered surveys , , , , , , , – while the remaining two were interviewer administered semi- structured surveys , . four of the twelve studies used validated survey instruments , – . figure . – flowchart describing the approach used to identify all eligible studies table . - characteristics of studies evaluating physician practice patterns in dementia care study research question country year sample (response rate) study design (validated instrument) sampling strategy (representative sampling) physicians speciality assessed setting rubin quantitative data on state of pcps diagnosis and treatment of dementia usa ( %) interview survey; (n) rockford medical society; (y) family, internal community, nursing home somerfield what are physicians’ experience with dementia, services they provide and factors for variation usa ( %) postal survey; (n) referrals to john hopkins, dementia or cognitive neurological clinic; (n) family, internal, neurology, psychiatry community glasser what are practices of rural physicians in dementia care usa ( %) interview survey; (n) state directory, medical society records; (y) general, family, internal, specialists community bisset can gps care for dementia patients in community and their view of current resources usa ( %) postal survey; (n) grampian state directory; (y) general community fortinsky how connected are pcps with community services for dementia care usa ( %) postal survey; (n) academy of medicine of cleveland; (y) family, internal community, nursing home brown how do pcps engage in ad practice behaviour usa ( %) postal survey; (y) american medical association; (y) general, family, internal community, nursing home study research question country year sample (response rate) study design (validated instrument) sampling strategy (representative sampling) physicians speciality assessed setting cody have educational efforts affected pcps dementia care usa ( %) postal survey; (y) state directory, annual family practice board meeting; (n) general community cavalieri do physicians give advanced care planning advice to patients with ad usa ( %) postal survey; (n) kennedy health system; (n) general, family, internal, geriatrics community fortinsky comparing dementia care practices of pcps in two states usa ( %) postal survey; (n) state directory; (y) family, internal community robinson what are the roles of generalists and specialists in dementia care in europe france, uk, germany, spain, italy postal survey; (y) unknown; (unknown) general, family, internal, specialists community baloch does specialty or geriatric training correlate with comfort in dementia care management usa ( %) web-based survey; (n) health texas provider network; (n) family, internal, geriatric community cohen- mansfield comparing the approach of mds, phds and nps in dementia related behaviour usa web-based survey; (y) american medical directors’ association; (y) all medical practitioners nursing home there was one multi-jurisdictional study conducted across five countries in europe . the other eleven studies were conducted in the us, but only two of these used nationally representative samples , (table . , figure . ). figure . – geographical locations of eligible studies from the usa *excludes one study based in europe the sample sizes for the studies varied from to practicing physicians. fifty percent of studies sampled from state directories , , , , , , % used national directories , , % sampled from local hospital networks , , and one study was unknown . seven of the studies used representative sampling for the jurisdictions they were surveying , , , , , , and one study did not report on its sampling strategy . ten of the studies reported response rates ranging from % to % , , – , , , , , , though five of those studies reported rates below % , , , , . . . variations in dementia care processes the scope of dementia care processes assessed by each study varied considerably. the nine care processes were categorized based on current north american consensus guidelines , . while ten of the study research questions identified dementia care practice as the primary interest , – , , , , – , only four assessed the full scope of care processes recommended by guidelines (at least one care process within each of diagnostic, management and referral) , , , , three of which were older studies (published prior to ) (table . ). most of these studies had low response rates or fairly small sample sizes. all nine dementia care processes had wide variations in the proportion of physicians who conducted each process (table . ). mass screening for dementia is still highly debated so unsurprisingly, only two studies assessed the proportion of physicians who screen regularly , . however the proportion of physicians who screen for dementia appeared to be high at % and %. disclosure to a patient and family member had the least variation with consistently high proportions of physicians ( % and %) reporting disclosure to both the patient and family member (versus to only the patient or non-disclosure until diagnosis is certain) in the two studies that assessed this process , . wide variation was seen in the formal memory testing process. the studies reported higher proportions of physicians who assess mental status, but these were not formal or written memory tests , , , , , , , . of the eight studies that assessed formal memory testing, six reported that the proportions of physicians who conducted formal memory tests were less than % , , , , , (table . ). indeed, three of these studies reported proportions below % , , . the lowest proportion of physicians using a formal assessment tool ( %) was reported in . similarly, the intervention process, which encompassed a wide range of pharmaceutical medications both for dementia and consequent behavioural problems, table . - variations in physicians practice patterns measured by proportions for each dementia care process study guideline recommended dementia care processes diagnostic management referral memory test imaging blood work intervention counselling community service specialist referral rubin ( ); n= % % % % % % % somerfield ( ); n= % % glasser ( ); n= < % %* % % % % bisset ( ); n= % % fortinsky ( )†; n= %* brown ( ); n= % % %* %* % cody ( ); n= % %* cavalieri ( )†; n= %* %* fortinsky ( ); n= %* %* robinson ( ); n= % % %* % baloch ( ); n= % %* %* %* % cohen-mansfield ( ); n= % % % *indicates highest possible value for each process (e.g. baloch et al., examined two imaging techniques, computer tomography and magnetic resonance imaging. some physicians use both techniques, so the technique with the highest proportion, computer tomography, was taken) †studies whose research objective was not to measure all dementia care processes no text, process not assessed – % – % – % – % – % reported proportions ranging from % to % , , , , , . four of the six studies reported proportions less than % , , , , which were primarily older studies and may be a reflection of the change in the available pharmacological therapies. brain imaging and blood work processes are both recommended by consensus guidelines to aid in diagnosis. the former recommendation applies only in some circumstances and therefore is not a universal guideline. imaging ranged from % to % in the proportion of physicians reported using it as a diagnostic tool , , , (table . ). physicians primarily made use of ct or mri. all three studies that assessed the blood work process reported consistently high proportions of physician utilization at almost % and above , , (table . ). the proportion of physicians who reported providing some form of counselling , , , , , was also consistently high with only two of six studies reporting less than % , . community service referrals on the other hand had a -fold variation ( % to %) , , , , , with four of the studies reporting proportions below ~ % , , , , while specialist referral had almost a -fold variation ( % to %) , , , , , , , with newer studies (published after ) reporting higher proportions. . discussion existing literature shows wide variation in the proportion of physicians who report conducting the dementia care processes recommended by guidelines. this was of particular note for the formal memory testing process which had a -fold difference in the proportion of physicians who reported conducting a formal test. several factors could have contributed to these care process variations including geography, resource constraints, patient demographics and changes in both recommended practice and approaches to practice over time , . the high heterogeneity of the included studies prevented any aggregate of results or calculation of adjusted proportions. the study protocol for this review used liberal definitions for each care process. this would tend to push up the proportions reported here, and thus decrease variation. given the range in proportions reported, the observed variation in physician practice patterns is, if anything, an understatement of ranges in actual patterns of practice. only four of the ten studies that identified dementia care as a primary research objective included measures of the full scope of dementia care processes as identified by guidelines. given the geographic homogeneity of the studies (mainly us based) and the identified research objective for each study, it was expected that the scope of dementia care would be relatively synonymous across studies. the publication date of the studies seems an unlikely explanation as almost all the studies that did measure the full scope of dementia care were older studies (published prior to ), indicating that the studies appear to be getting less comprehensive over time. the range of publication dates should be taken into consideration when examining the variation within each dementia care process, due to the shifting and updating of guidelines and understanding of dementia over the years. guideline recommended dementia care was first developed in in the us, prior to the oldest study in this review . however, it contained no specific recommendations regarding the management of dementia with an emphasis placed instead on correctly diagnosing dementia. these guidelines were only recently updated , however, other evidence- based best practice guidelines published in the interim provided details on the management of dementia, focusing on long-term counselling and appropriate referrals . the more recently published studies reflect this shift in dementia care understanding with higher proportions of physicians reporting counselling, community service and specialist referrals while the older studies were reporting on practice patterns in the absence of best practice guides. the widest variation for any care process was noted in the formal memory testing process ( - %) which is the most mature of all the dementia care processes, having guidelines and a large number of formally validated tools available for over three decades . it was surprising then that this was not the primary process used by physicians to identify dementia. it may be that physicians are asking questions about memory during the history-taking process, but formal tests are still necessary for a diagnosis . similarly, the specialist referral process had relatively wide variations in physician proportions, but with more of a trend toward higher specialist referrals in newer studies. this may be reflecting the shift in physician scope of practice over time . there is some contextual information (table . ) that can aid in the interpretation of the wide variation noted in the dementia care process. for example, somerfield et al. conducted their survey on physicians who had made at least one referral to a dementia or neurology clinic. these physicians are assumed to be more knowledgeable about dementia and may not be a representative sample, which could have contributed to the higher rate of specialist referral. glasser et al. conducted interviews on primary care physicians practicing in rural settings which contextualizes the lower specialist referral rate. finally, cohen-mansfield et al. primarily focused on physicians’ approach to dementia-associated behavioural issues in nursing homes therefore those physicians who were surveyed are more likely to provide an intervention which may explain the higher intervention rate. given these differences in the available studies that met the inclusion criteria, the general lower quality of existing studies and the low number of studies, i am limited in my ability to draw firm conclusions about the extent of the variation in the dementia care processes measured. . . limitations there are some other limitations to this analysis. all the studies that met the inclusion criteria were self-reported cross-sectional surveys with varying sampling strategies, primarily small samples sizes, and low response rates which may be associated with non-response bias and give rise to results that are less likely to represent the target population. none contained data extracted from medical records or administrative data, which would be a better indication of actual services provided. due to the limited number of studies on physician practice patterns in dementia care, i made no further exclusionary decisions on the quality of the studies, which may have contributed to the variation noted and influenced the quality of the results. several physician specialties were included in the practice pattern assessment but differences among these specialities were not described as almost all the studies pooled specialists and general physicians in their assessments and of those that conducted regression analysis to determine the effect of speciality on the dementia care processes assessed, only one study noted a difference. similarly, several studies did not describe what was considered an intervention in their study measure process, therefore i was unable to differentiate whether these were pharmaceutical or non-pharmaceutical interventions and chose to pool the results. self-reported results only demonstrate immediate recall and are prone to recall bias. however, since self-reported measures are susceptible to social desirability response bias, participants often over-estimate their answers, yielding higher than actual proportions . the wide variation in each dementia care process that still persists suggests that this bias is not a serious limitation. i was also unable to adjust for the heterogeneity of the studies and only extracted unadjusted proportions. the use of english only studies and primarily databases with peer-reviewed studies introduces the possibility of language and publication bias to this review. finally, while the mesh headings used in the search strategy appeared to index studies appropriately, they may not have been consistently used therefore there is some likelihood of missed studies. my search terms were broad precisely to mitigate this possibility. . conclusion there are wide variations, as reported in the literature, in practice among physicians providing clinical care to individuals with dementia despite the availability and dissemination of well-established best practice guidelines. these results are based on a systematic review, but available studies that met the inclusion criteria all have significant limitations as they are cross-sectional, self-reported surveys with often low response rates, sample sizes and of varying research contexts. as a counter to some of these limitations, i conducted an analysis of the receipt of dementia care at a patient level, utilizing population-based health care services utilization data (administrative data) in bc, described in detail in chapter . using these comprehensive data at a patient level allows me to a) conduct population level analysis that is not limited by sample size, response rates and is generalizable to the entire bc population b) examine patient characteristics that will allow me to separate out warranted and unwarranted variation and c) potential identify demographic characteristics associated with variation that are modifiable. before moving to that study, the next chapter will first outline the analytical methods used in this thesis, followed by the results of my analysis. chapter – methodology . the health services research lens populations grow and age and prices rise, which means healthcare services will continue to need improvement in quality and efficiency to help control expenditure growth. the magnitude and complexity of any task related to this within healthcare services is daunting. healthcare delivery encompasses several occupational groups that work with and sometimes compete with each other; standardized processes are difficult because of the uniqueness of each patient and the different types of coordination required for high quality care unlike other industries, doctors have considerable autonomy in their decision-making and direct most of the resources used; and the complexity of healthcare services is constantly evolving . there are other pressures as well, including several stakeholders’ influences such as government attempts at financial control, local opinion, healthcare staff organizations, and the medical product industry with its commercial stake . these are the issues that the field of health service research (hsr) aims to address. health services research is a term used to encompass a wide variety of analytical (qualitative and quantitative) methods drawing on several disciplines including epidemiology, economics, geography, political science, statistics and sociology, while also drawing on the clinical and biological sciences. hsr’s overarching goal is to “provide unbiased, scientific evidence to influence health services policy at all levels so as to improve the health of the public” . unlike a clinical lens, hsr often adopts a population perspective to help answer more universal questions that support the healthcare decision-making process. health services research uses a variety of sources of information, including surveys, interviews, focus groups, randomized trials, and administrative data (collected primarily for other, usually administrative, purposes). administrative datasets within this sphere were first utilized in the early ’s , but are now a commonly accepted source of research data . . . use of administrative databases administrative databases used for research purposes can be broadly defined as containing pre-existing data that have been collected for different administrative or operational purposes that are usually not research driven. unlike primary data that are collected specifically for research uses, the use of these data for research purposes is a “secondary use”. there are a number of operational purposes underlying the creation of these data sources, including registration or enrolment (e.g. for insurance coverage purposes), payment (for the services of a health care professional, or for a prescription drug or other health care product), or clinical care. the key advantage of using administrative sources of data for research purposes is that they can provide already available population-level information, thereby circumventing the cost and practical barriers to creating purpose-built population-level data resources, and addressing limitations inherently associated with studies using other sources of data such as sampling bias and limited sample sizes . the majority of administrative databases used in health services research are related to the delivery of services, so while covering an entire population, they can also provide a view of people as they move through various components of a healthcare system. this is particularly true in canada, where universal coverage for some key components of health care services creates population-based data resources as a by- product of system operations. administrative data resources are not without challenges when it comes to research applications. availability, inclusions, frequency and quality can vary, since these will all be affected by the primary purposes for which the data were assembled. therefore it is necessary to understand the details associated with how the data were collected in order to be able to use them effectively for research purposes. for the purposes of hsr, data from different sources can often be ‘linked’ in order to more fully explore a research question, while preserving the integrity and privacy of individuals and their information. . administrative data sources individual patient-level, longitudinal data on bc’s four million residents is available through population data bc (referred to as popdata bc henceforth). data on individuals and on caregiver-patient transactions are collected by the bc ministry of health and used to create comprehensive, population-based health care data sets suitable for research uses. the data provided to researchers contain unique study- specific codes to prevent personal identification of either patients or physicians, while still allowing linkages within and across files, to (approved) external files, and over time . these data files include encounter, enrolment, clinical data and registries. for this thesis, data were drawn from five internal databases available through popdata bc and two external databases (all described below) which were linked to the internal databases by programmers at popdata bc: ) the consolidation file; ) the medical services plan (msp) file ); the home and community care (hcc) file; ) the hospital separation file; ) the vital statistics deaths file; ) the pharmanet file; and ) the practitioner file from the college of physicians and surgeons of bc. data extracted from these linked databases were used to develop the key variables and measures required for my analysis as outlined in table . . table . - key variables and data sources for analysis key variables data source patient demographics and geography consolidation file dementia diagnosis, diagnosis of co-morbidities, health status msp file, hospital separation file clinical service use (dementia care services, longitudinal primary care services) msp file, hospital separation file home care and/or community service use patterns hcc file prescription patterns (acetyl-cholinesterase inhibitor and/or antipsychotic) pharmanet death and cause of death vital statistics death file length of stay in the community prior to moving to ltc msp file, hcc file hospitalizations hospital separation file transitions hospital separation file, hcc file physician demographics and geography practitioner file in order to access these databases and publish results using de-identified data extracted from them, data access requests were filed through popdata bc, and the proposed project was reviewed and approved by all relevant data stewarts. this data access request process includes providing proof of ethics review, which was provided by the university of british columbia office of research services behavioural research ethics board, and proof of peer review, which was provided by the school of population and public health thesis screening panel and the student’s supervisory committee. . . the consolidation file the consolidation file is the central demographics file maintained by popdata bc. it is a registry of all residents who meet eligibility criteria for bc health care insurance. it has been augmented by popdata bc to include cases where individuals receive services even in the absence of a valid registration. this file includes demographic information for each individual regardless of whether the individual uses healthcare services. the file is considered as complete a roster of individuals in bc as possible, though there are known limitations including incomplete coverage of first nations populations and federal employees. for this thesis, demographic variables used included year of birth, sex, and geographic location (health authority and health service delivery area) and neighbourhood income quintiles. neighbourhood income quintile is a measure of the adjusted income per person equivalent, derived from postal codes of patient’s residence and was used to develop a socioeconomic status (ses) indicator variable since ses plays a key role in health service use . the consolidation file also has data on what are termed ‘economic families’, which provides an indication of household composition and summarized by the ‘shared msp id variable. in bc, premiums are levied for msp coverage. the amount of the premium is based on family size and income. the premium may be paid by employers (as a benefit of employment), through public subsidy as in the case of people on income assistance, or by individuals themselves. lower income families are eligible for either partial or full subsidies, with the level of subsidy determined by the previous year’s family income. the administrative implication of this premium system is that an economic family is given one msp contract number while each unique individual receives a personal health number. the combination makes it possible to determine the nature of the economic family to which each person belongs . for the purposes of this thesis, if a person diagnosed with dementia belonged to an economic family of more than one person, this was used as a proxy indicator of the existence of a potential informal caregiver. this process is incomplete, in that it cannot be used to identify individuals living with adult children who would have a separate msp contract number. that is, while older adults and their adult children may share the same physical location, they do not constitute an economic family for the purposes of defining msp contract holders. in short, there is no way (using these data) to determine if a person has an informal (family or non-family) caregiver who does not live with them or who lives with them but has a different msp contract. . . the medical services plan file the msp file contains payment information for all care provided by physicians to bc residents where the physicians are paid by the province on a fee-for-service basis. the data contained therein describe services used, and each service record includes a patient diagnostic code (using icd version ), which has been validated for research uses of this genre) . the service provision descriptors are fee codes -- five-digit codes which indicate the insured service for which the practitioner was paid. these fee codes can be aggregated into service code groupings. service codes are two-digit codes that indicate the type of service rendered by a practitioner, such as an office visit or a home visit. fee item codes can be retired, new fee items can be added, and the amount paid associated with a fee item can change over time. specific fee items used in this thesis were cross-checked for their use and definition over the entire study period. each record in the msp fee-for-service payment file also includes the date of each visit, the total amount paid, a unique, study-specific physician identification number and the physician specialty code. specific fee item codes and the dates of visits were used to create individual-level measures to assess if guideline-consistent dementia care and longitudinal primary care had been provided. it should be noted that msp data do not include information on the use of services provided by physicians paid by non-fee-for-service methods, that is, physicians reimbursed through alternative payment arrangements (e.g. paid by salary or for a specified block of time). these alternative payment arrangements have traditionally represented less than percent of total payments to physicians, but their relative importance has been rising in recent years , and varies by physician specialty and by region (alternative payment arrangements are more common in rural and remote areas of the province and among specialities such as psychiatry). this information gap means that the analyses reported here are inevitably based on under-counts of incident dementia and use of services for dementia by individuals who receive services from these alternative payment providers. . . the home and community care file information on eligibility assessments and use of publicly-funded home care, home support, assisted living, ltc services and adult daycare services is contained in the home and community care (hcc) file , . all residents who receive an assessment, regardless of whether they are approved for care, are included in the file. the data for the hcc file are derived from three other files: ) the ltc advice file ) the direct care advice file and ) the home support claims file. each of these files contains detailed information on the type of service (for example, ltc service, home nursing, occupational therapy, physical therapy, community rehabilitation therapy, adult day programs, and home support), and amount of service and subsequent transactions which are tracked as service events for the period of time that the client receives care. a client who receives several services throughout the course of care will have multiple records indicating the different services and intensity of care received. referrals for assessments for hcc do not need to come from a physician, but can also come from hospitals, social workers or the families (or patients) themselves, though the source of the referral is not included in the hcc file. the hcc file also notably only has information on publicly-funded care and therefore does not capture any service information on privately-funded care or care provided by voluntary agencies. individuals may choose to purchase care privately because their assessment deems them ineligible for public care, as a supplement to publicly funded care, or as a substitute for that care. . . the hospital separations file the hospital separation file, also sometimes referred to as the discharge abstract database, records all inpatient and day surgery separations (discharges or deaths) from acute care hospitals . the file includes information on bc residents hospitalized in other jurisdictions. the data in the file are extremely detailed and include information on the date of admission and separation, the level of care received (differentiates day surgery, acute, and rehabilitation hospitalization), diagnoses, procedures, interventions and the most responsible physician during each stay. visits to emergency rooms that result in an inpatient admission are noted; however, other visits to and services received while in the emergency room are not included. prior to the / fiscal year, hospitals in bc used icd codes. therefore both icd and icd codes are used in this thesis. . . the vital statistics deaths file the vital statistics deaths file is a record of all deaths in bc, including month, year of death, place of death and underlying cause. it excludes all deaths of bc residents outside of the province (death of non-bc residents that occur in bc are recorded in this file but for the purposes of my thesis can be excluded based on previous healthcare utilization). these records were used to determine if a person in the cohort died prior to the end of the study period, in which case the records of that individual would be right censored in any time-to-event analysis. the cause of death, while provided, was not used for validation of death due to dementia as most people with dementia die due to other causes that are exacerbated by dementia. dementia is infrequently recorded as a cause of death, though this practice is starting to change . in any case, the cause of death was not needed for the purposes of identifying incident cases of dementia. . . pharmanet pharmanet is an online, real-time data system external to popdatabc which records all prescriptions and medical supplies dispensed in bc . it includes information on prescription drugs dispensed by community pharmacies in bc, through ltc settings, emergency departments and hospital outpatient pharmacies dispensing medications for patients to use at home. exclusions are over-the-counter medications, cancer medications dispensed by cancer agencies/centers, antiretroviral medications dispensed by hiv centers, and medications dispensed while in hospital. since it is housed at the bc ministry of health, it is considered an external database from popdata bc’s repository. the pharmanet database includes information on all dispensed prescriptions regardless of who pays. pharmanet records contain detailed information on patient demographics, the prescribing physician (including practitioner type and speciality), the drug information number, its generic name, drug strength, its therapeutic class, the date and quantity of medication dispensed, the number of days of supply and a flag for special authority drugs which is pertinent for achis covered under the alzheimer’s disease therapy initiative program mentioned previously. unfortunately the database does not contain any information on whether drugs dispensed are actually ingested (i.e. there is no way to adjust for non-compliance). the drugs of interest for this thesis, namely any achis, the nmda-type glutamate receptor inhibitor and antipsychotics, were identified through the anatomical therapeutic chemical (atc) classification system which classifies drugs based on the organ they act on and their chemical subgroup (the th level of the classification). this allowed identification of broad classes of medications used to treat dementia. pharmanet identifies drugs via drug identification numbers (dins) which are -digit numbers assigned by a computer system to each drug that has been approved for use in canada . therefore, i developed a cross-walk to map dins into appropriate atc groups for the medications of interest (appendix table b. ). . . the college of physicians & surgeons of bc file the college of physicians & surgeons of bc file is the second external data file used for this thesis. it contains information collected by the registering and licensing body for physicians in bc; all registered and practicing physicians in the province of bc are included. the records from the registry file include information on physician age, sex, year of graduation, place of training (canada, us, europe, africa, asia), specialty and membership status code (indicating whether the physician is currently practicing). physician characteristics were used to control for practice style and its possible contributions to the trajectories of care experienced by patients. . study design this thesis was divided into four major research objectives: ) conduct a critical assessment examining the existing research literature on actual physician practice patterns associated with the care of people with dementia and to what extent those practice patterns are consistent with published guidelines ) examine population-based variations in receipt of guideline-consistent dementia care and patient factors that are associated with that care ) examine transitions experienced longitudinally to establish patterns that can help identify points of care when transitions are highest and the factors that contribute to those transitions ) assess the association between receipt of guideline-consistent dementia care and/or high quality primary care and the number of transitions experienced by individuals with dementia the broad approach uses administrative data with multivariate modelling. the model selection for each objective is described in more detail in section . . . . . identification of study cohort for research objective , i used a combination of registry and utilization data (described in detail in section . above). a cohort of seniors + year olds with an incident diagnosis of dementia in / (described as cohort in figure . ) was identified. incidence was identified using a ten-year wash-in period (dating back to / ) during which no other diagnoses of dementia should have occurred (described in more detail below). since guidelines for dementia care focus primarily on the measures required for a diagnosis, this study design allowed me to use the incidence of dementia diagnosis to define the cohort and the period during which guideline-consistent care is expected. figure . – historical cohort study design for research objectives and , a longitudinal historical cohort methodology was developed using registry and administrative data. a cohort of individuals + years old with an incident diagnosis of dementia in / was identified and followed forward (to / ) and backward (one year pre-diagnosis, to / ). this is shown as cohort in figure . . in this case incidence was identified using a two-year wash-in period (dating back to / ) during which no other diagnoses of dementia should have occurred (described in more detail below). developing decision rules for defining the cohort was of critical importance to this work. in any given year, there are approximately , seniors living in bc. of these, ~ % can be expected to develop dementia . onset will occur at different times, in different ways, and will be detected at different points in a life trajectory. the inclusion criteria used here for the two ( / and / incident) cohorts were as follows:  all patients over the age of in the year / and over the age of in the year /  registered as bc residents for the entire study period  newly diagnosed with dementia in / (objective ) or / (objectives & ) cohort entry objective cohort entry objective & / / / / the process of identifying incident cases is always dependent on available information sources. in this case i interpreted “newly diagnosed with dementia” to mean that record including a diagnosis associated with dementia as classified through the international classification of diseases (icd) could be found in the medical service plan data (icd version code) and the hospital separation data (icd version or code). the specific codes are outlined in tables . and . . icd- diagnosis codes for senile dementia, vascular dementia, alzheimer’s disease and senility ( .xx, . x, . x, .xx excluding . for mild cognitive impairment, .xx), and/or icd- diagnosis codes (f , f , f , f , g ) , , were used. incident diagnosis was defined in a way consistent with prior literature, as patients who had a minimum of two physician diagnoses and/or one hospital diagnosis associated with dementia over a two-year period . this diagnosis requirement was used to increase specificity of identifying confirmed cases of dementia while reducing rule-out diagnoses. . administrative data have been demonstrated to be quite valid for the purposes of identifying individuals with chronic conditions, including dementia . often, cases of dementia can remain undetected for years. for the purposes of this thesis, it was important to examine incident cases as identified in the health care system because the focus is on appropriate dementia management, which is most significant during the first year after diagnosis and also because this study aims to describe the longitudinal primary care services experience of dementia patients, which begins at the point of diagnosis. a wash-in period of two years (for cohort ) or eleven years (for cohort ) was used in order to capture true incident cases of dementia. in other words, individuals had to meet the case definition as described and have no dementia diagnoses in their medical or hospital records in the prior two or eleven years in order to be included in the final cohorts. cohort was followed for a maximum of ten years from the point of entry (or until death) and cohort was followed for one year from the point of entry. . construction of longitudinal files in any given year, each resident of b.c. can generate anywhere from zero to many health care transaction records, which can appear in multiple different data files. the data used here are taken from the seven files described above, covering a twelve year period (from / to / ) for the entire population of bc aged + in / . the first step was to create an analytic record for each patient for each year of the study period. for cohort , these records were from / until / or death (whichever came first) including the two-year wash-in period. for cohort , the records were from / to / , including the eleven-year wash-in period. a unique study-specific patient id was used to link patient information across data files and years. annual fiscal year data files were produced containing comprehensive analytic and service use variables (described in section . . below) for each person. these annual files were then merged to create two data files. the first data file contained information on cohort , individuals who received an incident diagnosis of dementia in / , and was used to assess receipt of guideline-consistent dementia care in the year after diagnosis, addressing research objective . the second file was a longitudinal data file for cohort , created to trace individuals who entered the cohort (i.e. received an analytic variables in this case are the independent variables used to describe patient, physician and system characteristics incident diagnosis of dementia) in / and assess their healthcare transitions backward and forward over time to address research objectives and . . . analytic and service variables table . below lists the annual analytic, service and outcome variables defined for each individual in the cohort, classified by the characteristics identified and contextualized in the conceptual framework used to guide the study in chapter , section . . table . – detail of variables measuring characteristics in conceptual framework the covariates at the individual-level were divided into five categories: individual (or patient) descriptor variables, physician descriptor variables, system variables, dementia care service use variables and longitudinal primary care service use variables (table . ). each of these variables is described in further detail in table . including a characteristic description individual characteristics age, sex, income category (ses), health status (number of major adgs or comorbidity), responsive behaviour symptoms, caregiver status proxy (objective & ) physician characteristics age, sex, speciality, practice years, # of patients +, # of patients with dementia system characteristics health authority of residence or practice dementia care imaging, laboratory work, pharmaceutical prescriptions, in- office examination, counselling, specialist referral (all as defined in chapter ), home care assessment primary care first contact (hospital or ltc visits from physician providing plurality of care), continuity (proportion of all visits with physician providing plurality of care), coordination & referral (referrals for imaging & lab tests originating from physician providing plurality of care) definition of how they were constructed (if that is the case). each subsequent chapter also describes their use in the respective method sections. all variables were measured annually for the duration of the study period (from / to / ) and for both cohorts (except the primary care variables which were only measured for cohort ). individual descriptor variables: these are variables related to care use and outcomes of care. of these descriptor variables, income category, health status, behavioural symptoms and the informal caregiver status proxy variable require further explanation. income category is provided in the consolidated file and is derived from the neighbourhood income quintile data. it is used as a proxy indicator of ses, which plays a key role in health service use . health status is measured in two ways, by the number of multiple chronic conditions each individual has (used for objective ) or by the number of major aggregated diagnostic groups (adgs) (used for objective and ) and described in detail in section . . . below. the behavioural symptoms variable is derived from two variables indicating receipt of prescriptions of antipsychotics or benzodiazepines. individuals with dementia who also have behavioural symptoms often have very different use of the healthcare system which needs to be accounted for. finally, the informal caregiver status proxy variable was used for objective and and was derived from the shared msp id variable in the consolidated file. the shared msp id indicates all family members currently enrolled in the msp who belong to an ‘economic family’ and share a household (described in detail in section . . ). if a person with dementia belongs to an economic family, my assumption is that any family member(s) living in their household will likely function as a caregiver. sensitivity analysis measuring this against the caregiver status and marital status variables (more definite measures of having a caregiver) from the hcc data indicated good concordance. the former is used in analyses because the latter are available only for the subset of the population who receive home and community care services. physician variables: these were previously described in chapter , section . , and identified as variables describing physician practice patterns controlled for in objectives and . system variables: the health authority variable identifies the geographic location in which the patient resides and most likely receives care. based on the health authority it is possible to determine further descriptive characteristics of that system. there are five geographic health authorities in bc. three of these, fraser, vancouver coastal and vancouver island, contain major urban centres and a higher supply of specialists/family physicians. the northern and interior health authorities are considered more rural health authorities because they lack major urban centres and have a lower supply of specialist/family physicians. the fraser health authority has the largest population of the five, but is geographically the smallest. it is also the most urbanized. the vancouver coastal health authority includes three major population areas, an urban core (vancouver, richmond and the north shore), a moderately urban area (howe sound, powell river and the sunshine coast) and a more sparsely populated area (bella coola and central coast). its population pyramid has a significant bulge of - year olds compared to the overall population due primarily to the city of vancouver. vancouver island is less populated and is home to a high number of retirees, reflected in its population pyramid, who reside in the urban areas of greater victoria and nanaimo. the interior health authority encompasses almost a quarter of bc’s land mass with a much lower population density and with a small urban centre. its population includes a larger proportion of younger children and older adults compared to bc overall. lastly, the northern is the largest geographic area but is the smallest health authority by population size. it is the least urbanized and has a smaller proportion of older adults and larger proportion of younger children. dementia care variables: the dementia care service use variables were developed based on best practice guidelines for dementia care published by the bc ministry of health and the national canadian consensus conference , and described in chapter . these were categorized into six categories: recommended laboratory testing (blood work), imaging, physical examination, prescriptions, counselling and referral. i was unable to measure provision of memory tests, non-pharmacological interventions or community service referrals as there was no information on these in the files to which i had access. the imaging category only includes head ct as information on mri was not available in data files to which i had access. the dementia care service use variables were measured for the year of the first dementia diagnosis and the following year in keeping with guidelines that indicate these services should be provided during the period immediately following initial diagnosis. primary care variables: the primary care service variables were measured annually for the year of diagnosis. three main characteristics were defined as predictors of high quality primary care, these were: access, long-term person-focused care and coordination of care (described in more detail in chapter and summarized in table . ). first access was measured in several ways including: the number of settings care was provided, receiving care while in hospital or ltc from the physician providing plurality of care. long-term person-focused care was measured through continuity of care, while coordinated care was measured by the proportion of all referrals to specialists and for laboratory testing originating from the assigned primary care physician. patients were assigned to the primary care physician who provided plurality of care, defined as the physician most responsible for each patient and therefore receiving most of the patient’s visits (a more detailed description is provided in section . . . below). . . . health status in addition to basic demographics, heath status needed to be characterized for each patient in order to control for the effects of other chronic conditions on the outcome variables. health status was proxied using the johns hopkins adjusted clinical group case-mix system, a risk adjustment methodology . this system uses diagnoses that a patient accumulates from physician and hospital visits over a specific period of time (in this case, a year), to determine a clinical complexity/severity category. each diagnosis is classified into one of adgs, which are defined based on clinical similarity (severity, persistence, reoccurrence) and expected health care service utilization (e.g. follow-up visits, specialist referrals). each individual over the course of the year can then have - different adgs assigned. these aggregations are further refined by the system to reflect the concept of major conditions, with eight adgs identified as “major”, including time limited major conditions, chronic unstable conditions, major adverse injuries and malignancy . combinations of adgs, along with age and sex, are used to map patients into one of about one-hundred mutually exclusive adjusted clinical groups (acgs). each acg category is a measure of the patient’s expected need for health services over a subsequent period (based on services actually received during the measurement period). acgs are mutually exclusive and exhaustive. the system has been validated for use with bc administrative data . for simplicity, the mutually exclusive acgs are combined by the system to measure six levels of overall morbidity (non-users to very high users), termed resource utilization bands (rubs). for this thesis, only one variable derived from the john hopkins adjusted clinical group case-mix system was used for measurement of health status, the number of major adgs individuals had upon entry into the cohort. within my health status variable cluster, i used a second measure of morbidity -- the number of chronic diseases. a large proportion of individuals with dementia often have several other chronic conditions which can both affect the care they receive at the point of dementia diagnosis and longitudinally, and the outcomes of care. this variable was derived as follows: i identified ten chronic conditions of high prevalence in the older-adult population: diabetes mellitus, stroke, hypertension, chronic kidney disease, liver disease, arthritis/osteoarthritis, congestive heart failure, coronary vascular disease, chronic obstructive pulmonary disease and cancer, , as well as depression (commonly found in dementia patients) . a variable based on a simple count of co- morbid conditions was then created at entry into the cohort. . . . physician attribution process in both dementia care and primary care, physician (or practice) characteristics (described in table . ) have been shown to influence a patient’s trajectory of care. attributing these physician variables depends on identifying a single most responsible primary care physician for each patient. in the absence of rostering in bc, this implies using an attribution process in which individuals are “assigned” to a physician for the purposes of analysis. for objectives and , the assignment of a physician was done annually based on the physician providing plurality of care for each patient in that fiscal year. the physician providing plurality of care was defined as the physician who received the highest proportion of unique visits during the fiscal year. in the event of a tie, the assignment was made to the physician who billed for the most fee items for that patient. exceptions to these rules were institutional visits as these were measured as service units recording the number of days on which the practitioner saw that person. limitations to an assignment like this is that for some physicians, the patient ‘visit’ may actually be only a patient management activity or form fee (such as renewing a prescription over the phone) and did not actually involve a face-to-face contact. no charge referrals, which occur when a patient does not come in to the office for a visit but receives a renewal of a referral to a specialist (referrals to specialists must come from the primary care physician and in bc expire after months), were excluded prior to counting visits. sensitivity analysis was conducted to determine what percentage of patients received their dementia diagnosis from the same physician to whom they were assigned through the plurality of care process described. i found that this occurred for % of patients who had an incident physician msp diagnosis code for dementia. additionally, analysis was conducted to determine the median number of patients with dementia in the cohort treated by the same physician (to determine if clustering needs to be accounted for). each physician cares for a small number of patients (the median is ), eliminating concerns of clustering of patients within providers. table . - key analytic and service variables variable data source description patient variables age consolidated age in years age group in / derived age variable categorized - , - , + years sex consolidated female or male socioeconomic status consolidated neighbourhood income measured through quintile of adjusted income per person equivalent, - indicating lowest to highest income death vital stats year and month of death behavioural symptoms flag derived indicator flag for behavioural issues. composite variable developed from pharmanet indicating antipsychotic and/or benzodiazepine prescriptions adjusted clinical group msp indicator of health status described in section . . resource utilization band msp uses acgs to create coarser non-overlapping groups of morbidity levels ( -non user, -healthy, -low, -moderate, -high, -v high) # major aggregated diagnostic groups msp diagnoses are classified into of aggregated diagnostic groups based on clinical similarity and expected health care service utilization. eight of these groups are considered ‘major’ has diabetes msp described in further detail in section . . . has hypertension msp has congestive heart failure msp has chronic kidney disease msp has liver disease msp has arthritis/osteoarthritis msp has cancer msp has depression msp has cardiovascular disease msp has stroke msp has chronic obstructive pulmonary disease msp # multiple chronic diseases derived count of the number of chronic diseases previously defined in section . . . incidence of dementia flag derived indicates if incident diagnosis of dementia in that fiscal year dementia diagnosis location msp codes location that patient received dementia diagnosis, hospital or physician office variable data source description caregiver status proxy derived derived from the shared msp id variable in the consolidated file indicating if the individual shares a household described in section . . physician/practice variables age college physician age in years sex college female or male date of graduation college year of graduation from medical school years of practice derived derived from date of graduation and membership place of graduation college indicates if physician is foreign or canada trained speciality college indicates if physician has geriatric, psychiatric or neurological training # patients + msp indicates if physician has large number of patients + # patients + with dementia msp indicates the number of patients with dementia physician provides care to system variable health authority consolidated indicator of region of residence, - based on health authority delineations physician practice location college health authority physician practices in dementia care service variables defined in detail in chapters and laboratory testing msp tests recommended by guidelines to exclude other reasons for dementia-like symptoms complete hematology profile serum electrolytes serum calcium serum glucose thyroid stimulating hormone b vitamin imaging msp imaging recommended by guidelines to assist with diagnosis head computed tomography prescriptions pharmanet identified using dins that were converted to atcs described in section . . acetylcholinesterase inhibitor recommended antipsychotics all other antipsychotics trazodone for sleep disorders care management msp management processes during diagnosis defined by guidelines complete examination in office variable data source description individual counselling in-office referral referral to specialist re. dementia msp referral to a geriatrician, neurologist, psychiatrist, neuropsychologist, geriatric psychiatrist primary care service variables defined in detail in chapter continuity # of gp visits msp number of visits to primary care physician # of gp visits with attributed physician derived number of visits with the primary care physician identified as providing plurality of care in the year proportion of total visits with attributed physician derived used as continuity measure, indicates of all visits, the proportion that occurred with the attributed physician the patient is attributed to in the year coordinated & referral care # lab referrals msp number of referrals for laboratory tests # lab referrals with attributed physician derived number of lab referrals originating from the primary care physician identified as providing plurality of care in the year # specialist referrals msp number of referrals to specialists # specialist referrals with attributed physician derived number of specialist referrals originating from the primary care physician identified as providing plurality of care in the year proportion of total lab referrals from attributed physician derived used as coordination measure, indicates of all lab referrals, the proportion that originated from attributed physician in the year proportion of total specialist referrals from attributed physician derived used as coordination measure, indicates of all specialist referrals, the proportion that originated from attributed physician in the year access # days care received outside office hours msp indicates # days care was received outside office hours # days care in home msp indicates # days care was received at home # days care in hospital msp, dad indicates # days care was received in hospital # days care in ltc msp, hcc indicates # days care was received in ltc # alternate settings of care derived indicates the number of settings outside of the office that care was provided by attributed physician (includes home, hospital, ltc, assisted living) received visit from physician plurality in hospital flag derived used as access measure, indicates if patient received visit from attributed physician while in hospital received visit from physician plurality in ltc flag derived used as access measure, indicates if patient received visit from attributed physician while in ltc received service from physician plurality outside office hours flag used as access measure, indicates if patient received service from attributed physician outside of office hours variable data source description outcome variables flag for hospitalization dad indicates if person had at least hospitalization that year number of hospitalizations dad total number of all hospitalizations (includes acute, rehab, er etc.) total hospital days accrued dad total number of days accrued in hospital over the year. if admittance and discharge happen on same day, counted as day. mean length of stay in hospital derived mean consecutive number of days spent in hospital that year ltc facility flag hcc indicator if person resides in a ltc facility at beginning of year new ltc facility flag hcc indicates if person moved into ltc facility during the year second move to ltc facility hcc indicates if person moved to a second ltc facility length of stay in community derived tabulates the number of days an individual remains in the community prior to institutionalization. derived from hcc data # of transitions annually derived tabulates the number of transitions between home, hospital, respite care, assisted living and ltc. from msp and discharge abstract data total number of transitions derived used as outcome variable. tabulate the total number of transitions over entire study period # of months alive annually derived used as outcome variable. tabulates the total number of months the person is alive based on vital stats records # of transitions per year alive derived used as outcome variable. average of the transitions experienced per year alive . . outcome variables for this thesis the primary outcome variable, the number of transitions experienced, was defined as a physical move from one location to another with a stay of at least one night at the destination location, based on the recorded dates of admission and discharge , . the identification of a “transition” was verified based on a move that accounted for the departure and return locations. moves that resulted in a return location different from the original departure location would count as two transitions, so long as the “at least one overnight stay” criterion was met for each of the two apparent destination locations. for example, an individual who lives at home, is admitted to the hospital with an overnight stay and returns home will have had one transition; an individual who is admitted to the hospital from home, stays at least one night in the hospital, and then is discharged to a ltc facility will have had two transitions. an exception to this rule is for individuals who experience a move from their home to a ltc facility or assisted living and then back home. in these cases, it is rare that an individual who needs the level of assistance that a ltc facility provides would be able to live at home alone again. it is more likely that they have moved back to the community with an adult child or other caregiver, or into a private facility for which no data were available. this type of move was counted as two transitions because daily living circumstances changed twice. the number of transitions for each patient in the data sets were assessed for each year and summed over the trajectory of the patient’s care during the study period as demonstrated in figure . . figure . – example of transitions that can be experienced over study period hospitalizations of any kind including day surgeries with discharges that occur the following day, respite care and moves to and between ltc facilities or assisted living facilities were included. however, in-patient moves within the same ward or institution were excluded . the data cover all public hospitals, residential care facilities and assisted living facilities. . . . long-term care facility transition approximately , seniors years and older in bc were referred and initially assessed through the hcc system each year during the study period (figure . ). home and community care services provide additional support, allowing individuals to remain in the community longer, but also conduct assessments for those who cannot remain in the community to determine a needed level of care including possible moves to an assisted living or residential ltc facility. an initial assessment can result in a number of different outcomes. for example, some individuals may be found ineligible for publicly- funded support, in which case they may choose to ‘stay put’, or move into a private facility, data from which are not captured in the data sets available for my analyses. those who were considered eligible for public support after an initial assessment could go on to receive home-care services, could be deemed eligible for ltc, and from onward, could be considered eligible for assisted living ( was when public funding for assisted living began in bc) . while figure . offers a snapshot in time of this assessment process, individuals could have been assessed at any time during the study follow-up period; some had multiple assessments and some had already been assessed prior to the start of the study. for the purposes of this thesis, understanding the assessment process for hcc services is necessary in the context of measuring individuals’ first transition into a ltc facility. i created two variables, one indicating if a person was already living in a ltc facility at the point of entry into the cohort, and the other indicating the year of a person’s first transition into a ltc facility. measurements regarding transitions into a ltc facility could only be made for the subpopulation that received an assessment from hcc services and moved into a publicly-funded ltc facility of assisted living. figure . – pathways to publicly funded home and community care support . . analytic models the analytic methods used for this thesis varied for each objective and are therefore described in detail within the method section of each chapter though brief descriptions of model selection are provided here. the analytic models described below detail the dependent and independent variables that will be used in the analytic methods to answer each research question. research question b: is there variation in receipt of guideline-consistent care, and if so, what are the patient characteristics most strongly associated with this variation? a multivariate logistic (or logit) regression model is utilized when the response variable of interest (y) is dichotomous rather than continuous. this allows me to estimate the probability (p) associated with my response variable (y) for multiple discrete explanatory (independent) variables. in this case, each dementia care process is a dichotomous response variable (received the process of care, yes or no). i estimate the probability that any patient/individual characteristic affects the likelihood that individuals will receive each particular dementia care process. modelling this probability (p) using a logistic function, means the log odds of the response variable (y) (the logarithm of the odds of success or in this case, receiving the care process) is modeled as a linear combination of all the following discrete patient characteristics: ln(dementia care process) = β + β(age) +β(sex) +β(income) +β(health status) + β(health authority) research question c & d: what are the types of transitions experience and what factors influence these transitions? what factors influence the number of transitions during the peak points of care and overall? to understand what patient characteristics most influence the number of transitions experienced (other than death), over and above physician practice patterns, both system and physician characteristics were controlled for in a negative binomial model, poisson model or zero-inflated poisson model. all models are part of the family of generalized linear models and are used for analyzing count data. the choice of particular model and link function was based on the distribution of the particular outcome of interest. while both poisson and negative binomial regression control for the “rare event” nature of a transition, the negative binomial model’s assumptions better fit the transitions data. negative binomial regression does not assume an equal mean and variance, therefore correcting for over-dispersion (when the variance is greater than the mean) in my data through an extra parameter. regardless, a preliminary poisson model was run and the pearson chi square goodness-of-fit test assessed for every outcome (the assumptions being: the probability of an event is proportional to the time of observation, no two events can occur simultaneously, the event rate is constant through time and that the events occur independently). time was offset to account for the number of months of follow-up in the study. of the four outcome variables assessed, two were modelled using negative binomial analysis: ) transitions in the year of diagnosis; and ) total transitions experienced over the study period. the count of ltc moves in the year of diagnosis was modelled using poisson regression. lastly, the count of hospitalizations in the year of diagnosis was modelled using a zero-inflated poisson analysis due to an excess of zero counts. the zero-inflated poisson model operates in two parts, modelling the count of hospitalizations using poisson regression and the excess zeros using a logit model. the log of the response variable (y) (the logarithm of the odds of success or in this case, having a transition) is modeled as a linear combination of all the following discrete patient characteristics, controlling for death and physician characteristics: research question a & b: is receipt of guideline-consistent dementia care in the year of diagnosis associated with the number of transitions the patient experience in that year? is the receipt of high quality primary care associated with the number of transitions the patient experiences in the year in which dementia is first diagnosed? first, the odds of receiving guideline-consistent dementia care based on the location of diagnosis (community vs. hospital) was assessed to determine whether it should be an explanatory variable that should be included in the larger model examining the rate of transitions. a multivariate logistic (or logit) regression model was used with the response variables (y), which was each dementia care process (as previously described in research question b), and an explanatory variable indicating diagnosis location (while controlling for patient characteristics). rate of transition= β + β(age) +β(sex) +β(income) +β(health status) + β(caregiver) + β(responsive behaviour) + β(health authority) + β(end-of-life) + β(gp yrs of practice) + β(# patients +) + β(# dementia patients) ln(dementia care process)= β + β(age) +β(sex) +β(income) +β(health status) + β(health authority) + β(dx location) the same model selection process conducted for research question was applied to research question a and b. the response variable (y) of the number of transitions experienced in the year of diagnosis was modelled using negative binomial regression in two separate models with explanatory variables, dementia care and primary care (after controlling for patient, physician and system characteristics). rate of transition= β + β(age) +β(sex) +β(income) +β(health status) + β(health authority) + β(caregiver) + β(dx location) + β(gp yrs of practice) + β(# patients +) + β(# dementia patients) + β (primary care) rate of transition= β + β(age) +β(sex) +β(income) +β(health status) + β(health authority) + β(caregiver) + β(dx location) + β(gp yrs of practice) + β(# patients +) + β(# dementia patients) + β (dementia care) chapter – caring for dementia: a population-based study examining variations in guideline-consistent care . introduction the systematic review described in chapter identified wide variation in the application of guideline-recommended practice among physicians providing clinical care to individuals with dementia . this physician practice variation is indicative of inconsistent care received by patients with dementia and may result in differences in care outcomes. as highlighted in the systematic review, available studies examining this question have significant study limitations. all were chart extractions or self-reported surveys of physicians or patients with low response rates and/or small sample sizes , , , , . enlisting administrative data for this question offers one way to avoid the sample, geographic, and response rate limitations of previous studies. by conducting this analysis at a patient level, i will be able to examine potentially modifiable patient characteristics associated with any variation and be able to separate out warranted and unwarranted variation. the administrative data described in chapter provide a unique opportunity to compare patterns of care received with those recommended by dementia care guidelines. my research questions therefore are as follows: a version of chapter has been accepted. sivananthan sn, lavergne km, mcgrail km. caring for dementia: a population-based study examining variations in guideline-consistent care. alzheimer’s & dementia . research question a: what proportions of individuals newly diagnosed with dementia in bc receive each of the guideline-consistent dementia care processes? research question b: is there variation in receipt of guideline consistent care, and if so, what are the patient characteristics most strongly associated with this variation? i hypothesize that a high proportion of individuals will receive guideline-consistent laboratory and imaging processes of dementia care as these are more regularly administrated, however a lower proportion of individuals will receive all other processes of care as these are more discretionary. secondly, i hypothesize that there will be variation in receipt of guideline-consistent care by location and health status, however variation by other patient characteristics will indicate potential inequity and lack of quality of care. . methods i used the health care administrative data described in chapter to conduct a population-based study in bc. detailed analysis was conducted on the study population for fiscal year / , though data dating back to / was utilized for the purpose of identifying incidence of dementia, described in more detail below. . . data sources five of the seven databases described in chapter were used for this analysis: ) the central consolidation file ) the medical services plan (msp) payment file ) hospital abstract data ) vital statistics death file and ) the pharmanet file. . . study population cohort , described in chapter section . . was used for this component of the project. briefly, these were all community-dwelling seniors in bc, years and older at the time of diagnosis, who were incident cases of dementia in / or / . a case was considered ‘incident’ if there were no dementia diagnoses during a -year wash-in period. of note, the guidelines themselves, while differentiating the types of dementias in their pathophysiology, do not make distinctions in the diagnostic and subsequent care processes they recommend therefore combining the various types of dementias would not greatly impact my measure of guideline concordance. individuals were excluded if they were not registered for msp coverage for the whole of / , or if they lived in a ltc facility or died at any point during the one- year follow-up period. the study focused on community-dwelling seniors, as those who live in a ltc facility are known to have different patterns of primary care service use , . a full year of follow-up was used to provide adequate opportunity to assess receipt of guideline-consistent care. sensitivity analysis demonstrates that patients who died during the year had very different service use patterns with generally lower rates of receipt of most care processes (appendix table c. , c. a, b). . . recommended dementia care guidelines i used the most updated bc dementia care guidelines, released in july , as they reflect province-specific resource availability, were readily available to physicians practicing in bc, and incorporate recommendations from the canadian consensus group national guidelines , . dementia care processes that were previously developed and described in chapter section . . , were used to characterize different types of care received by patients with dementia: laboratory blood work, imaging, pharmacological interventions, counselling and specialist referrals. the care processes can be divided into those that are recommended for all newly diagnosed individuals (laboratory tests, counselling), those that are recommended in some circumstances (imaging, pharmaceuticals, physical exam, specialist referrals) and those that are contra-indicated (benzodiazepines). therefore, i did not expect % adherence as circumstances may vary for patients. my main interest, instead, was in identifying any systematic variation in these care processes by patient characteristics. the data used for this study did not include information that would have permitted measurement of the provision of memory testing, provision of magnetic resonance imaging, or referral to community services. service use was measured during the year of diagnosis in order to capture service provided during the lead up to diagnoses captured and in keeping with guidelines that indicate these services should be provided both as part of and after a confirmatory diagnosis of dementia . the definition of each care process is provided below. diagnostic services: laboratory tests – these are tests routinely ordered to determine the underlying cause of dementia and/or for rule-out of other causes (e.g. medication-induced dementia-like symptoms). the tests include a complete blood count, serum electrolytes, serum calcium, serum glucose, tsh and vitamin b levels. imaging – not routinely indicated but a ct scan of the brain is recommended under certain circumstances such as if the patient is under years of age, has abrupt onset or rapid progression, and has a history of cancer or if there is a history of urinary incontinence or gait disorder. physical examination – a physician exam should be conducted to identify neurological abnormalities and other medical conditions that could be contributing to the cognitive decline prescriptions: pharmaceutical intervention – all prescriptions related to the treatment of dementia were examined (donepazil, rivastigmine, galantamine and memantine). prescriptions of antipsychotics for behavioural and psychological symptoms are recommended only when alternate therapies are inadequate, symptoms are severe, or there is a risk of harm to the patient and others. benzodiazepines are the only class of drugs that the bc guidelines indicate should not be used due to high potential for adverse events. given this and the fact that i was interested in assessing if changes in antipsychotic drug use might be related to concurrent changes in benzodiazepines, utilization of both was assessed. management: counselling – counselling visit for a minimum of minutes provided to patients with dementia and family members during which patient/caregiver guides, support resources, care management, advance and safety planning can be discussed. specialist referral – referral to a geriatrician, neurologist or psychiatrist is recommended when management or diagnosis is problematic. . . explanatory variables i included the following patient demographic variables as possible contributors to variations in provision of dementia care: age, sex, income quintile, number of multiple chronic diseases and location (health authority). the number of chronic diseases was defined in two different ways. one counted the occurrence of the twelve most prevalent chronic conditions in seniors measured by the presence of at least two physician diagnoses over a two-year period, consistent with prior literature on chronic condition ascertainment . the chronic conditions included hypertension, depression, arthritis or osteoarthritis, cancer, congestive heart failure, diabetes, cardiovascular disease, stroke, chronic obstructive pulmonary disease, chronic kidney disease, liver disease. i used a -year assessment period counting back from the date of dementia diagnosis to ensure complete capture of prevalent disease. a second measure validated in the literature, the count of major adjusted diagnostic groups (madgs), was characterized for each patient using the john hopkins adjusted clinical group case-mix system as previously described in chapter , section . . . . this measure of madgs was used to test the sensitivity of my measure of co-morbidity and no difference was found between the count of prevalent chronic conditions versus number of madgs therefore the count of prevalent chronic conditions was used as a better adjustment for rule out diagnostic testing. . . statistical analysis characteristics of the patient cohort and dementia care processes are described using counts and percentages. each dementia care process was a dichotomous response variable (received the process of care, yes or no), therefore i estimated the probability that patient characteristics (i.e. age, gender, income, co-morbidity and geography) affected the likelihood that individuals will receive each particular dementia care process using multivariate logistic regression analysis. all variables were retained in the model regardless of significance and coefficients displayed as odds ratios. all variables were tested for collinearity. model fit was assessed using hosmer-lemeshow goodness-of-fit test. analyses were performed using stata, version . . results the study population was limited to community dwelling seniors because those who live in a ltc facility are known to have attenuated service use once admitted. separate analyses of seniors living in a ltc facility revealed that they receive a significantly lower proportion of guideline-consistent dementia care processes compared to non-residents (table . ). this is particularly apparent for the imaging, counselling and specialist referral dementia care processes where residents are unlikely to leave the ltc facility for a ct scan ( % received a ct scan) or referral to a specialist ( % received a referral). an extremely low proportion of residents receive in-office examinations ( %) and in-office individual counseling ( %); this is not un-expected given that the majority of residents of ltc facilities are seen by facility physicians. given these differences in primary care utilization patterns, seniors living in a ltc facility or newly admitted to a facility in / were excluded from the analysis reported here. table . – proportion of seniors + years of age residing in a ltc facility receiving guideline-consistent care dementia care process service measured lives in ltc facility (n= )* laboratory complete hematology profile % serum electrolytes % serum calcium % serum glucose % thyroid stimulating hormone % b vitamin % imaging head computed tomography % counselling & specialist referral complete examination in-office % individual counselling in-office % referral to specialist re. dementia % *excludes individuals who died in / , individuals were newly diagnosed with dementia in bc. of these, were not registered in bc for the full year, were excluded due to death during the one-year follow up period and were residents in a ltc facility or newly entered a ltc facility and were excluded. this left a study population of individuals (figure . ). figure . – flow of study participants individuals newly diagnosed with dementia in / (n= ) final inclusion in analysis (n= ) excluded (n= )  zero days registered (n= )  died during year of diagnosis (n= )  lives in a ltc facility (n= ) . . final study participants patients in the community dwelling dementia cohort had a mean age of ± . , were primarily female ( %) and had a mean income quintile of . ± . (where indicates low and indicates high, table . ). over % had three or more chronic diseases other than dementia. the five most prevalent chronic conditions were hypertension ( %), arthritis/osteoarthritis ( %), cancer ( %), depression ( %) and diabetes ( %) (table . ). the study population had a mean number of . ± . major adgs, which indicates this is a high-needs population ( indicates low and indicates high, table . ). the dementia cohort was fairly evenly distributed across the four larger health authorities, with the fifth contributing . % of the cohort, consistent with the small population in this health authority. table . – baseline characteristics of community-dwelling individuals newly diagnosed with dementia in / characteristics patients with dementia (n= , ) age in years (mean+ sd) . + . - . % - . % + . % sex* male . % female . % income quintile (mean+ sd)* . + . - lowest income . % - lower income . % - medium income . % - higher income . % - highest income . % multiple other chronic diseases (not including dementia) chronic diseases . % chronic disease . % chronic diseases . % + chronic diseases . % number of major adgs (mean+ sd) . + . treatment prevalence of major chronic diseases hypertension . % depression . % arthritis or osteoarthritis . % cancer . % congestive heart failure . % diabetes . % cardiovascular disease . % stroke . % chronic obstructive pulmonary disease . % delirium . % chronic kidney disease . % liver disease . % health authority* interior . % fraser . % vancouver coastal . % vancouver island . % northern . % *missing data: sex unknown= , income unknown= , quintile ha unknown= the majority ( %) of patients were determined to be newly diagnosed incident dementia cases using family physician payment records showing a minimum of two msp claims associated with icd- dementia codes (figure . ). nine percent of patients received the designation as a result only of a hospital diagnosis; the remaining % received both a hospital diagnosis and a diagnosis on at least one msp claim. for % of those who received their diagnoses through the family physician payment claim route, both initial msp claims originated with the same family physician. of those who received a hospital diagnosis and a minimum of two msp claims, % of incident cases were based on msp claims from the same physician. receiving a diagnosis of dementia in hospital may be indicative of patients whose dementia went unrecognized in the community and therefore may have more severe dementia. figure . – location of diagnosis of dementia (cohort ) . . variations in dementia care processes overall, a high percentage of the cohort received most of the guideline-consistent laboratory tests (between to %, except calcium and b ) and imaging ( % received a head ct) (figure . a) within a year of diagnosis. under half of the cohort received a prescription for an achi ( %) or antidepressant ( %) (figure . b). however, over a quarter of the cohort received an antipsychotic ( %), suggested for use only when other non-prescription therapies have been exhausted. a further % receive a benzodiazepine, which is specifically not recommended for seniors with dementia. a low percentage received referrals to a specialist ( %), or complete in- office examinations ( %). figure . a – percentage of seniors receiving guideline-consistent lab testing and imaging figure . b – percentage of seniors receiving guideline-consistent prescription and dementia care management processes in multivariate analysis, after adjusting for patient demographic characteristics, there is a consistent decreasing gradient in receipt of guideline-consistent dementia care with age (figure . a-c; appendix c. a, b). seniors years and older had significantly lower odds of receiving a specialist referral ( . ci . - . ), an achi ( . ci . - . ), the serum glucose test ( . ci . - . ), a complete examination in- office ( . ci . - . ), individual counselling in-office ( . ci . - . ), a head ct ( . ci . - . ) and all other laboratory tests compared to seniors - years old. a comparable pattern was noted for seniors to years old compared to the reference. figure . a – adjusted odds ratio of receiving calcium, b , laboratory tests and computed tomography scans figure . b – adjusted odds ratio of receiving acetyl-cholinesterase inhibitors, antipsychotics and non-recommended benzodiazepines figure . c – adjusted odds ratio of receiving a physical exam, counselling or specialist referral similar to age, there is a gradient by income. after adjusting for other characteristics, those in the medium, higher and highest income categories had higher odds of receiving individual counselling in-office ( . , . and . respectively) compared to those in the lowest income category (figure . c). individuals in the highest income category had higher odds of receiving a specialist referral ( . ci . - . ) with a % difference in proportion compared to those in the lowest income category. they also had higher odds of receiving an achi ( . ci . - . ), but lower odds for all other prescriptions of antipsychotics ( . ci . - . ), trazodone ( . ci . - . ) and antidepressants ( . ci . - . ) (figure . b). of note, individuals with dementia and other co-morbidities had significantly higher odds of receiving antidepressants, particularly those with three or more co-morbidities ( . ci . - . ) compared to individuals with dementia and no co-morbidities. despite having the smallest population, the northern health authority had the highest proportion of individuals receiving laboratory tests and head cts compared to the other health authorities (figure . a) with higher odds for both processes compared to the interior health authority (figure . a). the fraser health authority, which contains a major urban centre, had a significantly higher proportion of seniors receive an achi ( %) with a % difference and an odds ratio of . (ci . - . ) compared to the reference (figure . b, figure . b). conversely, individuals in the fraser ( . ci . - . ), vancouver coastal ( . ci . - . ) and vancouver island ( . ci . - . ) health authorities (all with major urban centres) had lower odds of receiving an antipsychotic compared to the interior health authority reference. the fraser ( . ci . - . ) and vancouver coastal ( . ci . - . ) health authorities also had a lower odds for receiving a benzodiazepine. . discussion there is significant variation in the proportion of individuals newly diagnosed with dementia who receive guideline-consistent dementia care. in a universal healthcare system like canada’s where there are no explicit financial barriers to care, this variation is still associated with income and geography, as well as age and sex. these results are consistent with those reported elsewhere , , . however, to the best of my knowledge, this is the first study to use administrative data to capture provision of clinical services at a population-level to all seniors newly diagnosed with dementia and to assess the full scope of dementia care processes. i find that the magnitude of variation for what may be considered essential dementia care processes, such as regularly administered laboratory exclusionary tests (except calcium and vitamin b ) and head cts, is comparatively small. as expected, at least % of patients received these care processes. this is also not surprising as over % of the individuals had two or more chronic diseases and would have received many of the laboratory tests or a ct scan as part of standard diagnostic protocol in cases involving multiple concurrent chronic conditions. however, this is not the case for more discretionary but equally important processes, such as a complete examinations in- office, in-office counselling and specialist referrals. it is expected that dementia care management processes such as these, particularly counselling, should have a smaller magnitude of variation. counselling is essential for lowering anxiety and preparing the patient and family for what to expect in light of such a devastating diagnosis. given that physician-reported barriers to provision of dementia care highlight insufficient time, difficulty in accessing specialists, and lack of expertise as key constraints, the magnitude of variation is unsurprising , . age significantly influences many of the dementia care processes assessed in this study. given the increased probability of concurrent multiple chronic disease with advanced age, physicians may be less inclined to do extensive laboratory test or cts on patients as they get older due to complications and unnecessary hardship. however this rationale does not hold for the absence of counselling or specialist referrals for those of advanced age. indeed, these processes should be provided, particularly in the case of multiple co-morbidities, to better explore and alleviate potential medication interactions, complex symptoms and develop strategies to cope . one possibility is that of age discrimination in practitioners’ attitude toward providing early diagnosis and broader interventions to older individuals. this has been described previously as a barrier to provision of good dementia care with physicians’ negative perceptions in diagnosing dementia being associated with therapeutic nihilism, stigma and ageism , . second is the lack of time to appropriately support older individuals with more complex symptoms and difficulty accessing specialists with limited availability , . an alternate possibility is that the severity of dementia at diagnosis, which i was unable to measure, may play a role in mediating the relationship between age and the management care processes. i also find a pattern of inequality, in which seniors newly diagnosed with dementia in higher income categories had significantly higher odds of receiving individual counselling and referrals compared to those of lower income. however it is impossible to know if this pattern arises because of patient health seeking behaviour where those with higher education are associated with asking for services or because of a bias in physician behaviour. insofar as income is unrelated to patient need for services, these observations deserve further attention. variations in use of medications recommended for dementia are more nuanced. consistent with earlier work, a lower percentage of seniors newly diagnosed with dementia receive recommended achis . this discretionary prescription practice may be related to cautions both in the guidelines and literature around the small to modest benefits of achi over short durations, the side effects and potential polypharmacy associated with their use in individuals with higher co-morbidity – . receipt of achis is influenced by income with individuals in higher income categories having higher odds of receiving achis. coverage of achi in bc is only available under a program designed to provide coverage of achis to patients with mild to moderate alzheimer’s disease who also agree to participate in a research study to assess the clinical effectiveness of achis . therefore, for all other individuals with dementia, use of achis would be an out-of-pocket expense, explaining the income related variation. in contrast, i find a higher than expected percentage of seniors with dementia receiving antidepressants, antipsychotics and non-recommended benzodiazepines. the off-label use of antipsychotics and benzodiazepines to treat behavioural and psychological symptoms of dementia has been shown to have low efficacy at best and to introduce significantly increased risk of adverse effects at worst , . use of atypical antipsychotics in seniors with dementia comes with a black box warning, but there is also no evidence that typical antipsychotics and benzodiazepines mitigate the risk of death in dementia any better than atypical antipsychotics . the guidelines recommend extreme caution when prescribing antipsychotics and only when alternate options to control these behavioural symptoms such as environmental (identifying potential triggers during meal or bath times) or psychosocial interventions (music, pet therapy, light exercises) are inadequate . i measure use of these drugs among patients in the early stages of a diagnosis of dementia, during which neuropsychiatric symptoms have generally not fully manifested, who should not require the use of these therapeutics, that is, unless diagnosis has been delayed and the dementia has progressed in severity or these drugs prescribed for a different condition. yet i find that over one quarter of seniors newly diagnosed with dementia receive an antipsychotic ( %) and/or benzodiazepine ( %). additionally, individuals in low-income categories and living within health authorities with smaller urban centres (and less access to specialists/family physicians) were more likely to receive antipsychotic treatment. i noted a similar geographic trend with the variation in benzodiazepine use. use of these drugs should be sporadic, short-term and infrequent in this population. these trends are an indication of larger issues within a healthcare system with drugs substituting for other forms of more appropriate non-pharmacological care. . . limitations there are some limitations to this analysis. i am not able to account completely for patient need, including assessing dementia severity; nor can i completely account for psychiatric illness, co-morbidities, or patient preferences for care, health seeking behaviours or health goals. to the extent that variation is the result of clinical assessment of need (which may be the case considering age, sex and co-morbidities) variations may be appropriate. however the full magnitude of variation by age, as well as those observed by income and geography, are unlikely to be explained by patient need or preference and merit further investigation. i was also unable to measure cognitive testing which is a key component of the diagnostic process and has been shown previously to have significant variation . administrative data cannot shed light on the important behavioural management aspects of dementia care. lastly, i was unable to measure referrals to community care, mental health or speciality services which are invaluable resources for both patients and their caregivers to meet the long- term psychosocial management needs of dementia. these services are able to provide specialized education and support to patient and physicians, though i do not anticipate that this should affect receipt of other guideline-recommended services. programs for pharmaceutical coverage in bc also complicate interpretation of findings with respect to income and pharmaceutical use. for example, fair pharmacare is an income-related program which could contribute to the income-related variation in the use of other drugs assessed in this study. while the bc guidelines and national canadian guidelines have almost identical recommendations, unlike the bc guidelines, the national guidelines do recommend the short-term use of benzodiazepines for behavioural-related symptoms. in both cases, recommendations are based on management of dementia alone, despite the fact that co-morbidity is high in this patient population. . conclusion the systematic review from chapter demonstrated that self-reported dementia care practices amongst physicians have wide variability, particularly for use of a formal memory test, therapeutics and making referrals to specialists or community services. the findings here, based on analysis of administrative data, are consistent with those earlier conclusions. i found wide variation in use of pharmacological interventions, particularly those not recommended for dementia patients, and in specialist referrals along with in-office examinations and counselling. in particular, i observe patterns of antipsychotic and benzodiazepine prescription that are indicative of their use as substitutions for other types of non-pharmaceutical care. encouragingly, several other dementia care processes such as exclusionary blood work and imaging had relatively high proportions of use with less variation. there is no expectation that everyone will receive all guideline-recommended care because of differences in needs based on personal circumstances and the severity of dementia when it is diagnosed. of more interest are the variations i find in use of services across patient characteristics. these differences unrelated to patient need say more about equity in health care services use. patterns of inequality by age, income and geography may signal barriers to care, particularly for the management of dementia care processes such as counselling and referral to specialists. these results add to our understanding of actual physician dementia practice patterns and highlight the gap between actual practice and guideline-recommended care. this has important implications as it corroborates the qualitative literature around barriers to providing good dementia care including time constraints during appointments, problematic attitudes resulting in age discrimination, lack of interdisciplinary teams and difficulty accessing community resources , resulting in patterns of inequity. physician education that goes beyond the pathophysiology and pharmacological treatment of dementia as a disease and instead emphasizes dementia as a chronic, complex condition which can benefit from timely diagnosis, comprehensive biopsychosocial treatment and management would play an essential role in reframing physicians’ approach. at a policy level, these results indicate the need to recognize that primary care physicians alone may not be able to provide adequate care and the need for integration across care systems to adequately support patients. the next step in this analysis will be to examine the association between receipt of dementia care processes and health outcomes. chapter will provide more detailed descriptives on the health outcome of interest, transitions, before i model associations in chapter . chapter – identifying points of care when transitions are highest and the factors that contribute to them . introduction a transition is defined as a physical move to a formal acute or community-based healthcare institution other than the home with a stay of at least one night . a greater number of transitions between care settings poses a serious challenge to continuity of care and the safety of the patient and is associated with medication errors, preventable hospital readmissions and increased mortality risk – . safety challenges are compounded by symptoms of dementia such as disorientation and behavioural outbursts, and these are potentially exacerbated and if a caregiver is not present to assist in the patient’s transitions , . particularly important is the fact that the overall number of transitions experienced is higher for people with dementia compared to those without dementia . guidelines for good dementia care stress the need for continuity and familiar environments which cannot be consistent with a higher number of transitions , , , . given the adverse outcomes associated with transitions, particularly for dementia patients, surprisingly few studies have examined the longitudinal dynamic of transitions between home, hospital, respite care and ltc facilities experienced by individuals with dementia , , and only one has done so beginning in the year in which a diagnosis of dementia was first established . individuals newly diagnosed with multiple sclerosis and parkinson’s disease have been shown to experience peaks in healthcare utilization and transitions in the year of diagnosis – . individuals with dementia also shows peaks in use, but this has not been examined specifically in the year of diagnosis . research literature on end-of-life has demonstrated that individuals living in the community with dementia experience % more care transitions than those without dementia in the two years before death . as outlined in my conceptual framework in chapter , section . , age, gender, morbidity , , , behavioural symptoms associated with dementia and the presence of a caregiver , are thought to affect the number and type of transitions, yet none of the studies that have longitudinally described transitions have examined these factors. examining transitions experienced longitudinally has the potential to identify points of care when transitions are highest and the factors that contribute to those transitions. understanding these patterns can help assess the relationship between receipt of care and outcomes and can identify possible points of intervention to reduce transitions. my research questions are: research question a: what is the rate of transitions experienced over the study period and what are the points of care during which transitions are highest? research question b: are there individuals who consistently experienced a high number of transitions and if so what are their characteristics? research question c: what are the types of transitions experienced and what factors influence these transitions? research question d: what factors influence the number of transitions during the peak points of care and overall? i hypothesize that: i) the number of transitions experienced will be higher at the point of diagnosis and at the end-of-life compared to the time period after diagnosis and before their end-of-life; ii) the individuals who consistently experience a high number of transitions will have a high number of co-morbidities in addition to dementia and behavioural symptoms of dementia compared to those with a low number of transitions; iii) hospitalizations will drive transitions, but a large proportion of the cohort will also move to ltc. age, morbidity and behavioural symptoms will be the factors associated with hospitalizations or a move to ltc. the lack of a caregiver will be significantly associated with a move to ltc but not hospitalizations; iv) the factors associated with a higher number of transitions will be age, gender (male), morbidity, behavioural symptoms of dementia and the lack of a caregiver both during the peak points and overall. . methods i analyzed eleven years of retrospective health care administrative data (april / to march ) for a cohort of individuals newly diagnosed with dementia in / . . . data sources all seven databases described in chapter were used for this analysis. that includes: ) the central consolidation file ) the medical services plan (msp) payment file ) hospital abstract data ) vital statistics death file ) home and community care data ) pharmanet file ) the college of physicians and surgeons of bc file. . . study population cohort , described in chapter section . . was used for this component of the project. briefly, these were all seniors in bc, years and older, with a new diagnosis of dementia in fiscal year / , followed backward one year (april ) and forward until death or the end of the study period (march ). a wash-in period of two years was used to ensure no other dementia diagnoses occurred and that new incident cases were being captured . individuals were excluded if they were not registered for health care coverage for the whole study period (prior to death) or if they were not an incident case in / , i.e. if they had dementia diagnoses during a -year wash-in period (april – april ). . . primary outcome – transitions care transitions are defined as a physical move from one location to another with a stay of at least one night. only transitions between among, publicly-funded respite care, assisted living, ltc and hospitals were included. outpatient care or moves between in-patient wards of the same facility were excluded, consistent with prior literature , . these variables were calculated on an annual fiscal year basis for each year of the study period ( / – / ) during which the participants were alive. while the cohort was only followed backward one year for analysis, incidence was determined based on a two year wash-in period, accessing data from / . . explanatory variables i examined the association between the number of transitions experienced and the following patient variables: age; sex; neighbourhood income quintile; health status (measured by number of major adgs, described in detail below); caregiver proxy status (identified using a shared msp id variable in the consolidation file, described in detail in chapter , section . . ); health authority of residence (described in detail in chapter , section . . ); and the presence of treated behavioural symptoms (measured by a prescription of an antipsychotic or benzodiazepine, described in section . . ). further analysis demonstrated that % of those in the cohort prescribed a benzodiazepine in the year of diagnosis had not received a prescription for a benzodiazepine at any point in the three previous years. this suggests the prescription in the year of diagnosis was likely related to the dementia diagnosis (data not shown). fifty-five percent had at least one prior prescription and % a prescription in all three years preceding diagnosis, indicating long-term use for reasons unrelated to dementia (such as anxiety or insomnia). in addition to patient-level variables, i adjusted for physician practice variables including the number of years the physician had been practicing, the number of patients over the age of in the practice, and the number of dementia patients in the practice. these were attributed to the patient-level data based on the physician providing plurality of care, described in detail in section . . . . patient health status was defined in two different ways. as previously described, these were to ) count the occurrence of the ten most prevalent chronic conditions in seniors measured by the presence of at least two physician diagnoses for that condition over a two-year period; and ) count the number of major conditions (adjusted for in regression analysis), using the johns hopkins adjusted clinical group case-mix system, described in chapter , section . . . . . . statistical analysis characteristics of the patient cohort are described using counts and percentages. the mean annual number of transitions experienced during the entire study period, total number of care transitions, average rate of transitions per year alive, percentage of participants who experienced transitions, hospitalizations, ltc moves, second ltc moves and the length of stay in hospital are reported. the data were analyzed using negative binomial regression to account for over- dispersion for two outcomes: a) the number of transitions experienced in the year of diagnosis and b) the number of transitions experienced over the entire study period. zero-inflated poisson analysis and standard poisson analysis were used for the remaining two outcomes respectively: c) the number of hospitalizations experienced in the year of diagnosis; and d) the number of moves between ltc facilities experienced in the year of diagnosis. the choice of models in each case was determined empirically. the mean and variance for each outcome variable was first assessed to determine if they fit poisson assumptions of the mean being equal to the variance. a histogram of each outcome variable was graphed to determine its distribution. an exploratory poisson regression model was run for all four outcomes and the pearson chi-square goodness-of-fit test used to measure the distribution of the outcome variable. when the pearson goodness-of-fit test results were significant (indicating that the distribution of the outcome variable differs significantly from a poisson distribution), other models were considered. larger standard errors and wider confidence intervals were also assessed as those indicate the poisson model did not fit the data. if the distribution of the outcome variable showed an excess of zero counts, a zero-inflated poisson regression model was employed with the option of robust standard errors. the vuong test was used to measure if a zero-inflated model was better than an ordinary poisson regression model. in other cases, a negative binomial model was used and the likelihood ratio test was used to measure if this distribution was a more appropriate fit than poisson (a large test statistic and an alpha significantly different from zero would suggest the outcome is over-dispersed and a simpler poisson distribution is not sufficient). finally, in all cases, model fit was determined by the adjusted coefficient of determination (r ), indicating how much of the variance in the data is accounted for by the model. the data was formatted with time, counted as months from the diagnosis to death. all models adjusted for individual characteristics, death and physician practice variables except for when modelling the total number of transitions experienced over the study period as it was not possible to accurately attribute a single physician who provides plurality of care over the entire study period. analyses were performed using stata, version . . results . . baseline characteristics in bc, individuals were newly diagnosed with dementia in / . the cohort had a mean age of . ± . years upon entry, was primarily female ( %) and had a median average income quintile of . ± . (where indicates low and indicates high, table . ). over one-third of the cohort received their diagnosis of dementia in hospital, either through a dementia hospital code alone or a combination of hospital and one msp code ( %) (figure . ). just under a quarter ( %) of the cohort had no evident chronic disease other than dementia, while % had two or more chronic diseases with an average of . ± . major adgs (including dementia), indicating a somewhat high needs population. at the time of entry, % of the cohort were living in the community and were fairly evenly dispersed across the health authorities, except for the northern health authority which contained . % of the cohort, consistent with its small population size. within the first year % of the cohort died and more than % died by year (figure . ). table . – baseline characteristics of individuals newly diagnosed with dementia in / characteristics patients with dementia (n= , ) age in years (mean+ sd) . + . - . % - . % + . % sex* male . % female . % income quintile (mean+ sd)* . + . - lowest income . % - lower income . % - medium income . % - higher income . % - highest income . % multiple chronic disease (not including dementia) chronic diseases . % chronic disease . % chronic diseases . % + chronic diseases . % number of major adgs (mean+ sd) . + . treatment prevalence of major chronic diseases (other than dementia) hypertension . % depression . % arthritis or osteoarthritis . % cancer . % congestive heart failure . % diabetes . % cardiovascular disease . % stroke . % chronic obstructive pulmonary disease . % chronic kidney disease . % liver disease . % living in a ltc facility yes . % no . % characteristics patients with dementia health authority* interior . % fraser . % vancouver coastal . % vancouver island . % northern . % figure . – location of diagnosis of dementia (cohort ) *missing data: sex unknown= , income unknown= , health authority unknown= figure . – survival curve of cohort . . aggregate healthcare use and transitions table . shows aggregate healthcare use during the entire period. on average, participants survived a relatively short period after diagnosis (median . years), experiencing a mean of . (± . ) transitions, or a rate of about one transition per year alive ( . ± . transitions) (table . ). almost % of the cohort experienced a hospitalization at some point during their trajectory, with a median of accrued hospital days. table . – transitions and healthcare use during the entire study period use total sample (n= , ) total transitions (mean ± sd; median) . ± . ; . total years alive (mean ± sd; median) . ± . ; . transitions per year alive (mean ± sd) . ± . participants who experienced a transition . % participants who died (%) . % participants with any hospital stay (%) . % total hospital days accrued (mean ± sd; median) . ± . ; . patients with ltc use (%) . % when the cohort was stratified by the rate of transitions experienced per year alive, % experienced no transitions while % experienced or more transitions per year alive (table . ). participants who experienced or more transitions per year alive had shorter survival post-diagnosis than those with fewer transitions ( . ± . years), had higher needs ( . ± . major adgs), a majority had behavioural symptoms of dementia ( % received a prescription for an antipsychotic or benzodiazepine), % had a caregiver and only % remained in the community over the study period. conversely, participants who experienced no transitions during their life time survived on average for . ± . years, had fewer major adgs ( . ± . ), only % received a prescription for an antipsychotic or benzodiazepine, % had a caregiver and % remained in the community over the study period. examined further, participants categorized by the average rate of transitions experienced over their time alive consistently remained in that category even when examining total transitions they experienced in each year (figure . ). for example, individuals categorized into the high average transition category ( + transitions) had a high number of total transitions (between to transitions) in each year that they survived, not just an overall high average (figure . ). table . – cohort characteristics stratified by rate of transitions no transits (n= ) ≤ transit/yr (n= ) > -≤ transits/yr (n= ) > -≤ transits/yr (n= ) + transits/yr (n= ) % of cohort % % % % % age (mean ± sd) . ± . . ± . . ± . . ± . . ± . gender (% female) % % % % % years alive (mean ± sd) . ± . . ± . . ± . . ± . . ± . no. major adgs . ± . . ± . . ± . . ± . . ± . prescription of antipsychotic or benzo (%) % % % % % has a caregiver (%) % % % % % remained in community (%) % % % % % figure . transitions rate in each year for those with < . , . - . , . - . and . + average transitions per year for / - / , by year of death (up to / ) . . transitions during year of diagnosis over the study period, individuals experienced a high number of transitions during the year of diagnosis, regardless of survival time (figure . a). sixty-six percent of the cohort experienced at least one transition, while % of the cohort experienced or more transitions that year (appendix table d. ). the transitions were primarily driven by hospitalizations (figures . b, . c). figure . a – transition rates over time for those diagnosed in / , by year of death figure . b – hospitalization rates over time for those diagnosed in / , by year of death figure . c – other transitions over time for those diagnosed in / , by year of death over % of the cohort experienced a hospitalization in the year of diagnosis with a length of hospital stay of . ± . days (median days). over one third of the cohort was identified based on dementia hospital codes only, or a hospital and one msp code (figure . ). of this group, only % received dementia as a principal diagnosis when hospitalized (appendix table d. ). the remainder received a secondary diagnosis of dementia but were hospitalized for other reasons with the most frequent three being a fractured femur ( %), pneumonia ( %) and heart failure ( %) (appendix table d. ). excluding this group, the average number of transitions in the year of diagnosis was where % of the cohort diagnosed in the community experienced at least transition and % experienced or more transitions (data not shown). looking a little more closely at those who did not receive their initial diagnosis of dementia in hospital, a quarter made their first move to ltc in the year they received their diagnosis. of these movers, those who experienced a hospitalization had a mean length of stay in hospital of . days while those who did not move to ltc that year had a mean length of stay in hospital of . days (data not shown). in comparison, for those who received their initial dementia diagnosis in hospital, % made their first move to ltc in the year they received their diagnosis and had a mean hospital length of stay of . days (data not shown). those in this group that did not move to ltc had a mean hospital length of stay of . days (data not shown). the risk of moving to a ltc facility was highest early in the care trajectory, specifically during the year of diagnosis, and diminished markedly over time (figure . ). indeed, the longer individuals survived post diagnosis, the less likely they were to end up in ltc, though survivorship bias needs to be considered as individuals with a better health status may be more likely to survive longer and remain in the community. figure . – number and proportion of those eligible moving from community to ltc, by years since diagnosis about half of those who remained in the community experienced a hospitalization, while in of those in the community experienced at least one re- hospitalisation (figure . ). among those who newly moved to ltc in the year of diagnosis, only % experienced no other transition while most patients had two ( %), three to five transitions ( %), or more ( %) transitions including re-hospitalizations and moves between ltc facilities (figure . ). of the % who were already in ltc when they received their diagnosis, just under half had no transitions, while almost in individuals were hospitalized. over % experienced re-hospitalizations and % were transitioned to a different care facility, despite being in ltc when they received their diagnosis. of the % of the cohort that died in the year of diagnosis, the majority experienced a transition ( %) and a further % experienced re-hospitalizations (figure . ). stratified by location, half of the cohort remained in the community during the year of diagnosis. figure . – frequency of different transition types experienced by newly diagnosed dementia patients . . transitions at end-of-life participants who survived longer over the ten-year study period had fewer transitions and hospitalizations over time (figures . a, b). however, regardless of survival time, participants not in ltc facilities experienced a marked increase in hospitalizations in the year prior to and the year of death, often exceeding hospitalizations in the year of diagnosis (figure . a). further, those with a high number of major adgs experienced a significant increase in hospitalizations regardless of whether they lived in a ltc facility or in the community, whereas those who had no major adgs other than dementia did not experience this increase at end-of-life. this suggests that it is not dementia alone, or even primarily, that drives hospitalizations at end-of-life (figure . b). figure . a – hospitalization rate over time for those diagnosed in / , by ltc status and year of death figure . b – hospitalization rate over time for those diagnosed in / , by ltc status and number of major adgs . . factors associated with transitions multivariate analyses showed that the patient factors associated with a higher rate of transitions in the year of diagnosis (after adjusting for physician practice patterns and death) were: poor health status, age (older experienced more transitions, except the oldest old), residing in health authorities with small urban centres, and at least one prescription for a benzodiazepine or antipsychotic prescription drug (table . ). multivariate analysis for the overall rate of transitions experienced over the entire study period demonstrated that age was no longer significant, but all previously identified factors associated with transitions in the year of diagnosis still were, with the addition of gender (being male). looking at hospital transitions more specifically, poor health status, residing in health authorities with small urban centres and receipt of a prescription for a benzodiazepine were all associated with a higher rate of hospitalizations in the year of diagnosis (table . ). neither age nor gender was significant. for transitions between ltc facilities, poorer health status and living in rural health authorities continued to be associated with a higher number of transitions between ltc facilities. however, age (being older) and receipt of a prescription of benzodiazepine or antipsychotic drug were also associated with transitions between ltc facilities. the presence of a caregiver was associated with fewer transitions between ltc facilities (table . ). table . – multivariate regression analysis examining patient and practice factors associated with transitions experienced transitions in year of diagnosis transitions over years alive nb hospitalizations in year of diagnosis moves between ltc in year of diagnosis patient variables number major adgs none reference reference . ( . - . ) ‡ nb reference - . ( . - . ) ‡ . ( . - . ) ‡ . ( . - . ) - . ( . - . ) ‡ . ( . - . ) ‡ . ( . - . ) ‡ + . ( . - . ) ‡ . ( . - . ) ‡ . ( . - . ) ‡ age - reference reference reference reference - . ( . - . ) ‡ . ( . - . ) . ( . - . ) . ( . - . ) ‡ - . ( . - . ) ‡ . ( . - . ) . ( . -. . ) . ( . - . ) ‡ + . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) ‡ sex female reference reference reference reference male . ( . - . ) . ( . - . ) ‡ . ( . - . ) . ( . - . ) health authority interior reference reference reference reference fraser . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) vancouver coastal . ( . - . ) ‡ . ( . - . ) ‡ . ( . - . ) ‡ . ( . - . ) † vancouver island . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) northern . ( . - . ) ‡ . ( . - . ) ‡ . ( . - . ) ‡ . ( . - . ) income quintile - lowest reference reference reference reference - low . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) - medium . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) - high . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) - highest . ( . - . ) . ( . - . ) ‡ . ( . - . ) . ( . - . ) ‡ prescription for benzodiazepine . ( . - . ) ‡ . ( . - . ) ‡ . ( . - . ) ‡ . ( . - . ) ‡ prescription for antipsychotic . ( . - . ) ‡ . ( . - . ) ‡ . ( . - . ) . ( . - . ) ‡ presence of a caregiver . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) ‡ . discussion to the best of my knowledge, this is the first time administrative data have been used to assess longitudinal patterns of transitions experienced by individuals newly diagnosed with dementia. my data demonstrate that while individuals newly diagnosed ‡ - p value < . , † - p value < . ,* - p value < . nb : practice variables were not included in this model nb : was modelled using a zero-inflated poisson analysis with the number of major adg variable as continuous all models controlled for death and physician practice patterns except as noted in nb with dementia in b.c. in this particular year did not experience as high a number of transitions overall as individuals in the us ( . ± . ), they did still experience on average a transition per year alive, primarily to an acute care hospital. over the ten-year trajectory, i was able to identify two points of time during which a high number of transitions were experienced: ) the year of diagnosis and ) the year of death. my results corroborate others who have demonstrated that end-of-life is associated with higher healthcare utilization and transitions , ; however, this is the first time that the year of diagnosis has been identified as a period of high transitions and disruption for those with dementia. the spike in transitions during the year of diagnosis occurs even after accounting for end-of-life or newly moving to a ltc facility, and occurs regardless of survival time or care location (i.e. living in the community or ltc). transitions in this year are primarily hospitalizations, followed by multiple moves between ltc facilities for those who reside in one. some of the moves between multiple ltc facilities may have been influenced by a policy implemented in bc in april which created a shift to needs-focused residential care access, a dimension of which included the expectation that individuals accept the first available ltc bed in any health authority, within hours of notification . individuals could subsequently move to their preferred location following processes each health authority had in place. it is also likely that once an individual received a diagnosis of dementia, they were moved to a different ltc facility better equipped to meet their needs. similar increases in hospitalizations, healthcare service use and costs have been identified within the year of diagnosis for individuals with other chronic, degenerative diseases – . dementia is not an acute condition nor is it effectively managed in acute hospital settings, so why the increase in hospitalizations and extended length of stay? examining those who received their incident diagnosis of dementia in hospital indicated that for the majority, dementia was not the primary reason they were hospitalized, yet a large percentage of the cohort received an initial diagnosis of dementia in hospital ( %). it is possible that the symptoms of dementia went unrecognized by the primary care physician for a while, were not communicated to the patient and caregiver or was simply not coded by the primary care physician so that it was only eventually recorded in the hospital record. regardless, it appears other adverse events are what prompt the initial acute hospitalization , . certain underlying conditions such as stroke can increase the risk of dementia, or other conditions that develop with the onset of dementia (difficulty swallowing, increasing the risk of pneumonia, increased risk of a fall) can trigger a hospitalization , . this was paralleled in the cohort i examined where a fall, pneumonia and stroke were the top three reasons for the initial hospitalization in which dementia was subsequently diagnosed. lastly, the vast majority of individuals newly diagnosed with dementia are multimorbid. the literature indicates that dementia is generally not diagnosed early so that when diagnosis does occur, the primary symptoms of deteriorating global cognition and verbal fluency would already be pronounced. this can significantly inhibit the individual’s ability to self manage their chronic conditions, locate or even communicate symptoms which could trigger acute hospitalizations and rehospitalizations , . the long stays in hospital may be because individuals with dementia take longer to recover and require more rehabilitation, particularly after the effect of a changed environment which can be particularly distressing for individuals with dementia . but it is more likely that the long stays are also because the hospital determines that they can no longer go home so they remain in hospital until they are discharge to a ltc facility . another unanswered question is why the peak in hospitalizations in the year of diagnosis but not other years (other than end-of-life)? first, other studies have demonstrated an association of incident dementia with increased hospitalizations . one explanation is that a large proportion of the cohort moved to a ltc facility during the year of, and the year after diagnosis. the ltc facilities have a primary care team that can provide appropriate care and are trained to recognize symptoms that patients with dementia cannot communicate, decreasing the need for hospitalizations in subsequent years. as well, receiving the diagnosis and becoming more familiar with the disease, what to anticipate and perhaps being connected with hcc services can assist patients, their caregivers and physicians to better manage the dementia and the effects of dementia on co-morbidities after the year of diagnosis. for those with dementia and their caregivers, the year of diagnosis is an overwhelming period of stress during which major decisions about care need to be made in addition to grappling with the long- term implications of a diagnosis. each new transition experienced increases the risk of medication errors, miscommunication, preventable readmissions and mortality , , , . this is therefore, an opportunity for a point of intervention during which patients can be referred to appropriate services and provided support to ensure continuity while minimizing the number of transitions (and in particular acute hospitalizations) experienced. studies that reported on the introduction of a care transition intervention for dementia patients newly discharged from hospital or residing in ltc facilities found sharply reduced rehospitalisation rates, correlated with lower hospital costs , . similar interventions need to be considered during the year of diagnosis. in addition, providing better education to caregivers of dementia about the trajectories of dementia, its effect on co-morbidities and how to anticipate and react to events prior to a crisis are essential. a second spike in transitions is noted at end-of-life. i find that regardless of survival period post-diagnosis, people in the community with dementia start experiencing an increase in hospitalizations the year prior to death and then a sharp spike in the number of hospitalizations in the year of death. this is in marked contrast to those in ltc. these results mirror findings from finland . the literature indicates poor prognosis and limited life expectancy for people with end-stage dementia following acute illness and aggressive medical treatment . the majority of people with dementia have expressed a wish to die at home without major medical interventions and yet for those in the community with dementia, hospitalization in the year of death continues to occur, a venue in which decision-making is more rushed, care is fragmented and aggressive interventions to prolong life are more readily performed , . these results indicate that the care at end-of-life for those with dementia follows the same general patterns as those in the general population despite recognizing that they require different care . the reasons for the spike in acute hospitalizations at end-of-life were not examined but are likely multifaceted and may not be specific to individuals with dementia. two- thirds of all deaths in canada occur in hospital despite most people’s wish to die at home . the proportions of individuals with dementia who die and access palliative care is low even though such care is associated with better quality of care at end-of- life , . once hospitalized, individuals with dementia are more likely to be given active, acute care treatment at end-of-life instead of palliative care and they receive inadequate pain control . this could be because, as previously highlighted, it can be difficult for physicians to appropriately assess and treat symptoms in individuals with dementia so that when a decline in health occurs, it triggers a crisis and hospitalization. individuals with dementia living in the community nearing end-of-life may have caregivers receiving inadequate home support who are ill equipped to handle the last stages of a person dying with dementia, particularly if they are multimorbid . many caregivers of individuals with dementia report high levels of stress, poor health and burnout , , . caregivers have also reported needing adequate, realistic information about issues such as pain management, navigating the system, accessing respite care and palliative care . lastly, individuals with dementia living in the community are less likely to have advanced care orders, including do-not-resuscitate and do-not- hospitalize . given this, it is even more important to provide patients and caregivers better education and user-friendly information about advanced care planning and palliative care options. physicians need to be provided tools to begin discussions around end-of-life early as part of comprehensive dementia care management, similar to discussions that occur during cancer care. of note is the overall survival time post-diagnosis for patients with dementia. i find a median of nearly years survival post-diagnosis (note, this is not post-onset of dementia as there is no accurate way to measure this). this finding corroborates existing evidence , – . while this may seem to be a long period with enough time for physicians to discuss end-of-life options, given the progressive degenerative nature of dementia, discussing end-of-life options early, even within the year of diagnosis, would provide individuals with dementia better opportunity to make decisions about their care before they are no longer capable of making such decisions , . i find that higher morbidity, living in more rural health authorities, and having behavioural symptoms associated with dementia are strongly associated with the number of transitions experienced both in the year of diagnosis and transitions overall in the study period, after adjusting for physician practice style. this parallels observations from other studies about the importance of these factors , . morbidity plays the biggest role. indeed, patients with dementia and a high burden of other sources of morbidity experienced the highest number of hospitalizations overall and at end-of-life regardless of whether they lived in a ltc facility or the community. ltc is considered a better/more appropriate care setting for this complex population than the community. these patients receive better medical support to manage their conditions and such facilities should be better equipped to provide good end-of-life care . yet, i find that the hospitalizations for people with a high burden of morbidity in ltc are similar in frequency and pattern to those in the community. both of these are significantly higher than for those who only have dementia. this suggests that the spike in hospitalizations at end-of-life is being driven by co-morbidities combined with the dementia, not by the dementia alone. more needs to be done to understand what supports need to be in place to manage and minimize the transitions experienced by this complex population and particularly why these patients are being hospitalized while in ltc. interestingly, the presence of a caregiver has a weak association with fewer moves between ltc facilities in the year of diagnosis. this is in the direction hypothesized, and the fact that it is not more strongly significant may reflect that the proxy variable used as a measure of caregiver status is imperfect and likely underestimates the effect of having access to an informal caregiver. it is likely that the lower transitions and ltc moves associated with individuals in the highest income categories are an indication of the use of private facilities which i lack information on. . . limitations this study faced several limitations. the reasons for institutionalization are varied, and include availability of a caregiver, difficult to manage behavioural symptoms, and progression and severity of the dementia . i was unable to separate out and measure these factors using the administrative data available for this study. i was unable to measure the location of death and whether patients receive palliative care while in hospital or in ltc, though previous studies have indicated that older residents with dementia who die in ltc or hospital generally do not receive palliative care , , . despite the availability of universal, publicly funded healthcare services and ltc, there are several private ltc facilities in the province for which there is no publicly available information. in order to have a longer follow-up period, i identify patterns of diagnosis beginning in / , however, these patterns may be different in more current years. finally, there is the potential for omitted variable bias given the type of data i had available. however, the variables identified as being significantly associated with transitions in the models have been validated through other quantitative and qualitative studies, and as long as any omitted variables are uncorrelated with the independent variables included, my regression analysis should still produce unbiased estimates. . conclusion for people with dementia for whom familiar environments and routines are important, frequent transitions (particularly to a hospital environment) are especially distressing and can cause further disorientation, and decline , . as well, each new transition increases a multitude of risks. the spike in transitions during the year of diagnosis highlights an unsettling situation affecting a frequently distressing period for individuals with dementia and their caregivers, but also suggests a useful target for interventions that might be effective in reducing such transitions. in my next chapter i explore in further detail whether receiving what is considered guideline-consistent dementia care and/or high quality primary care is associated with fewer transitions experienced. chapter – guideline-consistent dementia care and high quality primary care – is there an association with transitions? . introduction the chronic nature of dementia requires care that provides accessibility, care coordination and continuity in order to meet the ongoing biopsychosocial needs of people with a primary diagnosis of dementia , . these are also the attributes of high performing primary care -- there is good evidence that these result in better management of chronic conditions, fewer preventable hospitalizations, shorter lengths of stay, reduced use of emergency rooms and reduced risk of mortality – , however, many of the studies that have examined primary care have focused on adults and young children but not on elderly populations and particularly not on vulnerable elderly populations such as those with dementia . in the previous chapter i identified the year of initial diagnosis and the year of death as crucial time points during which individuals with dementia experience a peak in the number of transitions. guidelines for dementia care outline diagnostic and treatment services that are (or should be) heavily concentrated in the first year after diagnosis. the hypothesis is that adherence to guidelines will lead to better outcomes, but studies that have assessed physician barriers to implementing these guidelines indicate skepticism among healthcare providers regarding the strength of this association . therefore, my research questions are as follows: research question a: is receipt of guideline-consistent dementia care in the year of diagnosis associated with the number of transitions the patient experiences in that year? research question b: is receipt of high quality primary care associated with the number of transitions the patient experienced in the year in which dementia was first diagnosed? i hypothesize that holding all else constant, receipt of guideline-consistent dementia care, and appropriate primary care that encompasses continuity of care and coordination will contribute to fewer transitions. i also hypothesize that receipt of guideline-consistent dementia care will be associated with receiving high quality primary care as measured by continuity of care. . methods the same cohort described in chapter was used in this section of the analysis. here, i focused on the year of diagnosis as this was the year in which i measured receipt of guideline-consistent care. as well, this was when the cohort experienced a high number of transitions and when the largest proportion of the cohort moved to ltc or died. . . data sources and study population the same data sources and study population as described in chapter were utilized in this analysis. for consistency and comparison with cohort from chapter , the main cohort in this analysis excluded individuals who died during the year of diagnosis and/or lived in ltc at the time of diagnosis. however, separate focused sensitivity analyses were conducted on two groups, ) individuals who newly moved to ltc in the year of diagnosis (referred to as sub cohort as these individuals were included in the main cohort) and ) individuals who died during the year of diagnosis. . . primary outcome - transitions the same primary outcome as described in chapter , section . . was used. briefly, care transitions are defined as a physical move from one location to another with a stay of at least one night. only transitions between the community, respite care, assisted living, ltc and hospitals were included. outpatient care or moves between in- patient wards of the same facility were excluded; this approach was consistent with prior literature , . . . measures of guideline-recommended dementia care & high quality primary care i examined the association between receipt of ) guideline-consistent dementia care and ) high quality primary care, with the number of transitions experienced. guideline-consistent dementia care was described in chapter (see also sivananthan, lavergne, & mcgrail, ) but briefly, the guidelines were derived from the most updated bc dementia care guidelines, released in july , as they reflect province- specific resource availability, were readily available to physicians practicing in bc, and incorporate recommendations from the canadian consensus group national guidelines , . the care processes i expected to find in guideline-consistent care, in the first year of diagnosis ( / ), were: laboratory exclusion tests (any one of blood count, serum electrolytes, serum calcium, serum glucose, tsh and vitamin b ); a ct scan of the brain; prescription of an achi, antipsychotic or benzodiazepine, trazodone or antidepressant; a physical examination; counselling; referral to a specialist (geriatrician, neurologist or psychiatrist); and receipt of a hcc assessment. receipt of high quality primary care was based on a definition developed by starfield et al. . three dimensions of primary care were measured: ) access ) long- term person focused care and ) coordinated care from an assigned primary care physician. patients were assigned to the primary care physician who provided the highest proportion of unique visits during the fiscal year of initial diagnosis. in the event of a tie, the physician who billed the largest number of fee items (essentially visits) was assigned as the most responsible source of primary care. the following attributes were measurable within the context of those dimensions (they are also summarized in table . ): access - defined as care from the assigned primary care physician in alternate settings (e.g. hospital) or outside regular office hours. access was measured as three binary variables indicating receipt (or not) of a visit from the assigned primary care physician outside office hours or while the patient was in hospital or, for the sub cohort, while in ltc. receipt of house calls from the assigned physician was extremely low and therefore excluded as a measure. long-term person-focused care –defined as providing longitudinal care to patients across the spectrum of their needs. i was unable to operationalize ‘person-focused’ care with administrative data, however, continuity is an essential requisite to person-focused care since it is impossible to understand the values and context of a patient without following them over time. therefore provision of continuity of care serves as a reasonable marker for ‘person-focused’. this was measured as the number of visits with assigned primary care physician, divided by total number of visits patient had that year . this measure of continuity of care was chosen because it was easier to interpret and operationalize. coordinated care – defined as the coordination of care across care settings, including referrals to specialists and for laboratory testing. this was measured by the proportion of all referrals to specialists and for laboratory testing originating from the assigned primary care physician. table . – description of primary care dimensions measured primary care dimensions access received hospital visit from assigned physician flag of billings in hospital by assigned physician while patient was in hospital patient level received ltc visit from assigned physician flag for billings in ltc by assigned physician while patient was in ltc patient level received visit from assigned physician outside office hours flag for billings indicating services were provided outside of office hours by assigned physician patient level long-term person focused care continuity of care # visit with assigned physician divided by total number of visits patient had in the year patient level coordinated care proportion of specialist referrals originating from assigned physician # outpatient specialist referrals originating from assigned physician divided by total number of specialist referrals in the year patient level proportion of laboratory referrals originating from assigned physician # outpatient laboratory referrals originating from assigned physician divided by total number of laboratory referrals in the year patient level . . controlled explanatory variables all explanatory variables described in chapter , section . . were used for adjusted for. briefly, baseline patient characteristics included age, sex, income quintile (measured at the neighbourhood level), health status (measured by number of major adgs as previously described), caregiver proxy status (identified using a shared msp id as previously described in section . . ), health authority, and receiving a dementia diagnosis in hospital (versus the community). these are described further in section . . . physician practice characteristics adjusted for included the number of years the physician had been practicing, the number of patients over the age of in the practice and the number of dementia patients in the practice. these were based on the physician providing plurality of care, described in detail in section . . . . . . statistical analysis the proportion of the cohort to receive guideline-consistent dementia care and high quality primary care were described using counts and percentages for the main cohort and sub-cohort. the association between location of the incident dementia diagnosis (hospital versus community) and receipt of dementia care was examined via logistic regression to determine whether the location was a variable of importance to be included in the final model. the data were analyzed using negative binomial regression for three models: the association between ) receipt of guideline-consistent dementia care and transitions ) receipt of high quality primary care and transitions ) receipt of both guideline- consistent dementia care and high quality primary care and transitions. model selection and fit followed the same process as described in chapter , section . . . when both guideline-consistent care and high quality primary care were examined in a model, i tested for collinearity in the measures related to laboratory and specialist referrals. chapter showed that the highest number of deaths and moves to ltc was in the year of diagnosis, a period during which transitions may be modifiable by primary care. therefore sensitivity analyses were conducted to examine the relationship between receipt of high quality primary care and transitions for individuals who newly moved to a ltc facility (sub-analysis , conducted on a sub cohort) in the year of diagnosis or those who died and were excluded from the main cohort (sub-analysis ) (summarized in table . ). for sensitivity, these analyses were also conducted in the year following diagnosis ( / ) to see if the same trends were observed. analyses were performed using stata, version . table . – summary of sub-analyses and sub-cohorts analytic model cohort description model a rate of transition= β + β(age) +β(sex) +β(income) +β(health status) + β(health authority) + β(caregiver) + β(dx location) + β(gp yrs of practice) + β(# patients +) + β(# dementia patients) + β (dementia care) main cohort model b rate of transition= β + β(age) +β(sex) +β(income) +β(health status) + β(health authority) + β(caregiver) + β(dx location) + β(gp yrs of practice) + β(# patients +) + β(# dementia patients) + β (primary care) main cohort model c rate of transition= β + β(age) +β(sex) +β(income) +β(health status) + β(health authority) + β(caregiver) + β(dx location) + β(gp yrs of practice) + β(# patients +) + β(# dementia patients) + β (dementia care) + β (primary care) main cohort model d (sub- analysis ) rate of transition= β + β(age) +β(sex) +β(income) +β(health status) + β(health authority) + β(caregiver) + β(dx location) + β(gp yrs of practice) + β(# patients +) + β(# dementia patients) + β (primary care) sub-cohort of individuals who newly move to ltc model e (sub- analysis ) rate of transition= β + β(age) +β(sex) +β(income) +β(health status) + β(health authority) + β(caregiver) + β(dx location) + β(gp yrs of practice) + β(# patients +) + β(# dementia patients) + β (primary care) individuals who died (excluded from main cohort) . results . . descriptive analyses after exclusion for death in the year of diagnosis (n= , ) and living in a ltc facility at the beginning of the year (n= ), , individuals newly diagnosed with dementia remained in the main cohort. the main cohort experienced a median of transition in the year of diagnosis, while % of those who experienced a transition had or more transitions. almost % of individuals in the main cohort experienced at least hospitalization, half of whom ( %) were diagnosed with dementia in hospital (table . ). in comparison, the sub-cohort (those who newly moved to ltc) had a median of transitions (including their move to ltc), almost % had or more transitions, and % experienced at least hospitalization (table . ). individuals who died in the year of diagnosis also had a median of transitions in the year of diagnosis, % experienced or more transitions and %of that cohort experienced at least hospitalization. . . receipt of guideline-consistent dementia care and high quality primary care process for the main cohort, in the year of diagnosis, a high percentage of the cohort received laboratory tests ( %) and half received imaging ( %) consistent with guideline dementia care processes (table . ). one-third of the cohort was prescribed an achi, while between one-third and one half of the cohort received an antidepressant ( %), antipsychotic ( %) or benzodiazepine ( %), used for behavioural symptoms of dementia. however, an extremely low percentage of the main cohort received any discretionary dementia care processes such as counselling ( %), physical examination ( %) or a referral to a specialist ( %). just over % received a hcc assessment, which would determine eligibility for home care or ltc services; referral for this assessment does not necessarily get initiated by a physician, so the proportion referred by physicians would undoubtedly be lower than %. primary care was measured through three processes (table . ). access to a physician in alternate settings demonstrates that individuals in the main cohort received care, on average, in settings. a high proportion of the main cohort that experienced a hospitalization in the year of diagnosis received a visit from their physician ( %) and % of the cohort that newly moved to a ltc facility received a visit from their physician (table . ). long-term person-focused, or continuity of care, was high in the cohort in the year of diagnosis, with on average % of visits being with the assigned physician. broken down further, % of the cohort had all visits with the same physician while % of the cohort had % or less of their visits with the assigned physician. with respect to coordinated care, % and % of patients respectively, received all their specialist and all their laboratory referrals from the same physician. with regard to the three dimensions of high quality primary care for individuals who newly moved to ltc during the year of diagnosis, individuals in that sub-cohort received care in a median of settings, had lower continuity of care (median % of physician visits with the ‘assigned’ primary care physician) but otherwise did not appear to differ significantly from the main cohort. a higher proportion of these individuals ( %) received all their specialist referrals from the assigned physician (table . ). individuals who died in the year of diagnosis (and were excluded from the main cohort) also received care in a median of alternate settings and a very high percentage received a visit from the assigned physician when in hospital or ltc ( % and % respectively) (table . ). table . –dementia care and primary care use in year of diagnosis receipt of services main cohort (n= ) % of cohort sub cohort (newly moved to ltc) (n= ) people who died † (n= ) number of transitions experienced (median) transition transitions transitions experienced at least transition . % . %* . % experienced + transitions . % . % . % experienced at least one hospitalization . % . % . % experienced + hospitalizations . % . % . % dementia care laboratory testing . % ct scan . % prescription for achi . % prescription for antipsychotics . % prescription for benzodiazepines . % prescription for trazodone . % prescription for antidepressants . % counselling . % physical examination . % referrals for dementia . % home & community care assessment . % primary care access # alternate care settings (median) . . . received hospital visit from assigned physician (for those hospitalized) . % . % . % received ltc visit from physician assigned physician (for those newly in ltc) . % . % . % long term person-focused care proportion of all visits from assigned physician (median) . % . % . % received % of care from assigned physician . % . % . % received % or less of care from assigned physician . % . % . % coordinated care received % of specialist referrals from assigned physician . % . % . % received % of laboratory referrals originating from assigned physician . % . % . % *note: all individuals moved to ltc which was counted as a transition, therefore this is a measure of an additional transition †note: these are all individuals who died and were excluded from the main cohort individuals who received a diagnosis of dementia in the community had a much higher likelihood of receiving laboratory testing, acetyl-cholinesterase inhibitors, counselling, a physical examination and referral to a specialist for dementia, all processes associated with guideline-consistent dementia care (table . ). they were also less likely to receive a prescription for an antipsychotic or benzodiazepine. table . – odds of receiving guideline-consistent care based on receiving a diagnosis in the community (relative to receiving an initial diagnosis in hospital) dementia care odds ci laboratory testing . . - . ct scan . . - . acetyl cholinesterase . . - . ‡ antipsychotics . . - . ‡ benzodiazepines . . - . ‡ trazodone . . - . antidepressants . . - . counselling . . - . ‡ physical examination . . - . ‡ referrals for dementia . . - . ‡ hcc assessment . . - . ‡ ‡ - p value < . , † - p value < . ,* - p value < . controlling for age, sex, income, health authority, health status . . regression analysis preliminary analysis indicated that variables used to measure the primary care dimension of access appeared to have occurred mainly in emergency situations. receipt of care outside of office hours, while in hospital and while in ltc were all significantly associated with a higher number of transitions. if at all, it would have been anticipated that receipt of these services would be associated with fewer transitions unless they were provided in emergency situations during which patients are already experiencing multiple transitions. the use of a physician-level variable indicating provision of care outside office hours was tested for sensitivity (as it was hypothesized a physician-level variable that measures access would be a better indication of a physician’s willingness to provide care outside office hours, without necessarily being a proxy for care in emergency situations) and was not significant. the measure of access as a dimension of high quality primary care was therefore excluded from subsequent regression analysis. in multivariate analysis, after controlling for patient and practice characteristics and for receiving a diagnosis of dementia in hospital; receiving guideline-consistent laboratory testing, an acetyl-cholinesterase inhibitor, counselling, a physical examination and a referral to a specialist for dementia were associated with fewer transitions (table . , model a). however, receiving a prescription for an antipsychotic or benzodiazepine, and a hcc referral were associated with a higher number of transitions. similarly, controlling for patient and practice characteristics, higher continuity of care was highly associated with fewer transitions in the year of diagnosis. receiving a higher proportion of specialist referrals from the assigned physician was also associated with fewer transitions (table . , model b). when receipt of high quality primary care and guideline-consistent dementia care were both assessed in one model, the same processes of care that were independently associated with transitions remained significant, with only the continuity of care measure dropping slightly in the strength of its association (table . , model c). due to collinearity between receipt of laboratory tests/ specialist referrals in guideline-consistent dementia care and coordination of referrals for laboratory tests/specialists in high quality primary care, the coordination variables used to measure high quality primary care were dropped in this model as they were more indirect measures. the sensitivity analysis that focused on individuals who newly moved to ltc in the year of diagnosis demonstrated that higher continuity of care is associated with a fewer number of transitions, but receiving a higher proportion of laboratory referrals from the assigned physician was associated with a higher number of transitions (table . , model d). this same association was seen in the sub-analysis on individuals who died in the year of diagnosis (table . , model e). table . – multivariate regression analysis examining association of dementia care and primary care with transitions experienced in the year of diagnosis transitions (model a) transitions (model b) transitions (model c) transitions - sub analysis (model d) transitions - sub analysis (model e) primary care variables continuity of care . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ coordination of specialist referrals . ( . - . )‡ - . ( . - . ) . ( . - . ) coordination of lab referrals . ( . - . ) - . ( . - . )* . ( . - . )* dementia care variables lab . ( . - . )† . ( . - . )* ct scan . ( . - . )* . ( . - . ) achi . ( . - . )‡ . ( . - . )‡ antipsychotics . ( . - . )‡ . ( . - . )‡ benzodiazepines . ( . - . )‡ . ( . - . )‡ trazodone . ( . - . ) . ( . - . ) antidepressants . ( . - . )* . ( . - . ) counselling . ( . - . )‡ . ( . - . )† physical examination . ( . - . )‡ . ( . - . )‡ referrals for dementia . ( . - . )† . ( . - . )† hcc assessment . ( . - . )‡ . ( . - . )‡ sub analysis : sub-cohort of individuals who newly moved to ltc; sub analysis : individuals who died ‡ - p value < . , † - p value < . ,* - p value < . controlling for age, sex, income, health authority, health status, behavioural symptoms, receipt of diagnosis in hospital, physician practice characteristics . discussion receipt of guideline-consistent dementia care and high quality primary care, are independently associated with fewer transitions across care settings for patients newly diagnosed with dementia in the year of diagnosis. while, in general, guidelines introduced and followed lead to more uniformity and concordance with best practice guidelines has been shown to be associated with better outcomes – , previous studies have consistently demonstrated a lack of concordance between best-practice recommendations for dementia care and actual practice, leading to under-diagnosis and poor management , , , , , . barriers to physician adoption of dementia guidelines include a myriad of issues such as a perceived lack of evidence for better outcomes . these data demonstrate, for the first time, that receipt of some guideline- consistent dementia care, independent of continuity of primary care, are associated with fewer care transitions. this is important in this population because transitions are associated with poorer outcomes. fewer transitions are the result of fewer hospitalizations and fewer physical moves between ltc facilities or assisted living facilities during the year of diagnosis. given the peak in transitions, and particularly the high number of hospitalizations during the year of diagnosis (as demonstrated in chapter ), the finding here demonstrates that guideline-consistent dementia care is associated with fewer transitions during this chaotic period. this is not only consistent with my hypothesis, but reinforces the importance of finding ways to improve the uptake of care guidelines for this population. this is particularly true for receipt of discretionary dementia care management processes such as counselling and a referral to a specialist for dementia. it is important to acknowledge that i am not able to show a causal relationship with this analysis; however my hypothesis was based on literature which has demonstrated that, for example, counselling better prepares patients and their caregivers in terms of what to expect given a diagnosis and communicates techniques to handle symptoms, potentially reducing the need for hospitalization , , notably, receiving a prescription for an antipsychotic or benzodiazepine is associated with a higher number of transitions. i was unable to determine whether individuals who were prescribed these medications had a clinical indication for their receipt, though the literature indicates low lifetime prevalence of most psychiatric illnesses that would have required a prescription of this type , . my results are consistent with the literature which indicates that ) individuals with behavioural symptoms of dementia experience a higher number of transitions across care facilities , and ) receipt of prescriptions for antipsychotics or benzodiazepines is associated with a higher risk of adverse events . of note, accelerated cognitive and memory decline are predictors of hallucinations and psychosis . given that i was unable to measure functional status or severity of dementia, it is possible that the acuity of dementia at the point of diagnosis was higher in individuals receiving these prescriptions for behavioural symptoms, and that it is this, rather than the prescriptions, that was contributing to a higher number of transitions. as well, cognitive, functional and behavioural changes are considered primary stressors leading to institutionalization , and i was unable to capture these within the data available to me. receiving a hcc referral was also associated with a higher number of transitions. this may be because receiving the referral means individuals are more likely to be assessed, which would allow them access to ltc and contribute to a transition. interestingly, individuals diagnosed with dementia in the community were less likely to receive a hcc referral than those newly diagnosed in hospital. while these referrals do not need to originate from a physician, it is possible that ) primary care physicians practicing in the community are unaware of the referral process and not referring their patients, ) patients who are diagnosed in hospital have a poorer health status/severe dementia and are referred, or ) the hospitalization itself brings patients to the attention of the system and they are therefore more likely to be referred. similar to guideline-consistent dementia care, i found receipt of high quality primary care, measured through higher continuity and coordination of care, to be associated with fewer transitions. given that these are attributes of a high performing primary care system, with good evidence for better outcomes of care, the results are not surprising. however this is a contribution to the continuity of care literature, because that literature lacks studies on elderly vulnerable populations such as those with dementia. further, this strong association with higher continuity exists at the end-of- life and for individuals newly moving to a ltc facility even after controlling for morbidity and other relevant factors. however, higher coordination of laboratory referrals was associated with more transitions. this may be because at both those care points (moving to ltc and end-of-life) receiving higher coordination of laboratory referrals, similar to the measure of access, is provided under emergency circumstances. newly moving to a ltc facility is a major life event for an elderly person with dementia; having high continuity of care would ensure that the individual’s care needs are recognized and met and multiple medications are reconciled early in the transition. similarly, as demonstrated in chapter , end-of-life is a period during which individuals with dementia experience a second peak in transitions. this can be due to a variety of factors. often, individuals with dementia are multi-morbid and these other conditions are exacerbated (and masked) by the dementia. as well, pain management is difficult to ascertain and control in individuals with dementia , which can trigger hospitalizations during which more extreme, life-prolonging interventions are taken. these generally result in poor outcomes for elderly patients with dementia, particularly at end-of-life . having high continuity of care at end-of-life would allow the physician who is aware of the patient’s history, medications and perhaps end-of-life wishes to: assess and manage symptoms to ensure early interventions are provided before symptoms worsen; communicate with the caregiver and provide support as to what to expect; and ensure the wishes of the patient are followed at end-of-life (if they had been previously documented). they would therefore be providing informational, management and relational continuity during essential periods of care . i hypothesized that higher continuity of care is the pathway through which better guideline-consistent dementia care is provided. yet my analysis demonstrates that the two appear to be independent effects. the strength of the association between guideline-consistent dementia care and transitions remained the same even after the continuity of care measure was introduced; it was in fact the strength of the continuity of care measure that dropped (though only slightly). this indicates that ) receiving guideline-consistent dementia care alone is important and ) providing better continuity is not the mechanism by which guideline-consistent care appears to occur; the effects are separable. this goes counter to my hypothesis, but is not unrealistic for actual practice. many reasons have been identified for why physicians do not provide guideline-consistent dementia care, but this does not mean that the physician is not providing good continuity of care. continuity would allow the physician to still monitor the patient, notice any decline or worsening of symptoms and potentially also monitor the health of the caregiver, which are predictors of institutionalization and hospitalizations. finally, receiving a diagnosis of dementia in hospital is not optimal. people who received their diagnosis in hospital had a higher number of transitions, and were less likely to receive guideline-consistent dementia care. those who received their diagnosis of dementia in hospital also had higher odds of receiving a prescription for an antipsychotic or benzodiazepine, both of which are used to control the behavioural symptoms of dementia. it was, however, not possible to determine the mechanism through which this occurs, for example which came first, being more likely to receive these prescriptions because these individuals were hospitalized, or being hospitalized because of symptoms. as previously discussed, it is possible that individuals who received prescriptions for antipsychotics or benzodiazepines had a higher acuity of dementia and are therefore more likely to be hospitalized. regardless, trends over time (comparing between cohort and cohort , figure . and figure . respectively) indicate a shift toward diagnosis in the community. . . limitations there are several limitations to the analysis reported in this chapter. first, these results demonstrate association, not causality. my model cannot establish, unequivocally, an order of cause and effect. for example, high transitions and disruptions may make it difficult for physicians to provide guideline-consistent dementia care. indeed, the transitions themselves may prompt investigation of cause that leads to a dementia diagnosis. this would be consistent with the high proportion of patients receiving a diagnosis of dementia in hospital. other studies will need to study causality more directly, but if implementing better guideline-consistent dementia care results in fewer transitions, it could be a significant cost saving and life-improving, strategy. a potential method to estimate causality could be the use of an instrumental variable to control for unobserved confounding and measurement error, thereby allowing for the possibility of causal inferences from observational data. the key would be determining a good instrument for this purpose. given this, there is the potential for omitted variable bias due to the type of data i had available. however, the variables identified as being significant in the models have been validated through other quantitative and qualitative studies and as long as any omitted variables are uncorrelated with the independent variables included, my regression analysis should still produce unbiased estimates i was unable to determine if individuals who were prescribed antipsychotics or benzodiazepines had a clinical indication for their prescriptions; however the prevalence of schizophrenia ( . % lifetime prevalence), bipolar i disorder ( . % lifetime prevalence), major depressive disorder with psychotic features ( . %), general psychosis ( . %) and neurotic disorders ( . %) is low , . while there may be clinical indications for prescriptions of antipsychotics other than the behavioural/psychosis symptoms of dementia, i would not expect those indications to explain all of the prescriptions. i was unable to measure the severity of dementia at diagnosis given the nature of the administrative data to which i had access. this, obviously, could influence the number and types of transitions experienced by individuals. . conclusion the results of chapter showed that the year of diagnosis is critical. the analyses here are consistent with, and suggestive of, the importance of increasing uptake of guideline-consistent dementia care. previous studies have indicated that physicians perceive a lack of evidence demonstrating the value of implementing guideline-consistent dementia care . this study now contributes to that body of literature, demonstrating a clear association between guideline-consistent dementia care and outcomes. as well, these results provide evidence for the continued value of high quality primary care in a complex population during key points in time of a patient’s care trajectory when gaps in continuity usually occur. chapter , - conclusion . summary and key contributions this thesis had four main objectives: ) conduct a critical assessment examining the existing research literature on physician practice patterns associated with the care of people with dementia and to what extent those practice patterns are consistent with published guidelines ) examine population-based variations in receipt of guideline-consistent dementia care and patient factors that are associated with that care ) examine transitions experienced longitudinally to establish patterns that can help identify points of care when transitions are highest and the factors that contribute to those transitions ) assess the association between receipt of guideline-consistent dementia care and/or high quality primary care and the number of transitions experienced by individuals with dementia a systematic review of the literature demonstrated that there is wide variation in self-reported physician practice patterns with regard to provision of guideline- consistent dementia care. the review also highlighted significant limitations of existing research in that all the studies that met the inclusion criteria were self-reported survey a version of chapter has been accepted. sivananthan sn. short end of the stick? health care inequity in a vulnerable population of individuals with dementia. canadian geriatrics society journal of cme copyright ( ) andrewjohn. used with permission from publisher(andrew john publishing) designs with varying sample strategies and small sample sizes. this led to my second objective which was to use population-based administrative data, organized at a patient-level, to address the study limitations seen in the systematic review, but also to examine potentially modifiable patient-related factors associated with any variation as a way to differentiate warranted and unwarranted variation. my results corroborated what was seen in the systematic review, with wide variation in receipt of guideline-consistent dementia care processes. my research also showed that this variation was associated with income, geography, age and sex of dementia patients, indicating potential inequities in care. the next step in my analysis was to examine if there is an association between receiving these dementia care processes and my primary health outcome, transitions between living/care locations. transitions were chosen as an outcome variable of particular interest for this population because the literature demonstrates that dementia patients fare better with minimal physical disruption and changes to routine. a greater number of transitions between care settings poses a serious challenge to the continuity of care and the safety of the patient and is associated with medication errors, preventable hospital readmissions and increased mortality risk – . existing literature lacks in-depth descriptions of longitudinal patterns of transitions experienced by individuals newly diagnosed with dementia. my research illustrated that over a ten-year follow-up of a cohort newly diagnosed with dementia, transitions are highest during the year of diagnosis and at end-of-life. in both cases, the primary driver is hospitalizations. finally, i found that, holding all else constant, receipt of guideline- consistent dementia care is associated with fewer transitions in the year of diagnosis, independent of receipt of high quality primary care. these findings are significant in that they demonstrate the lack of concordance between guideline-recommended care and actual practice using data and a method adapted to address the biases that limited the generalizability of previous studies. from a policy-guidance perspective, these findings also highlight patterns of inequity in receipt of dementia care unrelated to need, while demonstrating the value of providing guideline-consistent dementia care in the year of diagnosis during which patients experience the highest number of transitions and flux in care. this is particularly timely as canada, a member of the g summit on dementia in , recently increased its research investment in the prevention, diagnosis and care of dementia and co- hosted a global dementia legacy event to explore the value of academia-industry collaborations in september . bc specifically, was one of the first provinces to recognize the need for a provincial dementia strategy which the government released in the form the dementia action plan in november . advances based on the three priorities identified ) support prevention and early intervention, ) ensure quality person-centred dementia care and ) strengthen system capacity and accountability is still ongoing. the action plan outlines high-level strategic goals to address gaps in care which are supported by the evidence in this thesis. this concluding chapter is organized into three sections. first i provide a brief summary of the primary findings of the research chapters (chapters , - ), their contribution to knowledge in the field contextualized by our current understanding of dementia care, and potential policy implications that flow from them. second i comment on the strengths and limitations of the overall thesis, extending beyond the specific limitations already addressed in each research chapter. finally, i discuss future strategies that can build on the evidence presented here. . research findings . . variations in guideline-consistent dementia care – lesson learned from a systematic review guidelines are created based on existing evidence and are meant to indicate approaches to practice that are likely to produce the best results for individual patients. they are published to encourage specific processes of care and to create more uniformity in practice with the expectation that this will improve patient care and outcomes . guidelines are particularly important in care for dementia patients because of the evolving nature of our understanding of optimal dementia care and because assessment and subsequent treatment is provided by primary care physicians who often have limited knowledge of changes to guidelines and sometimes limited experience with dementia patients , , . in chapter , i systematically review the existing literature on physician practice patterns associated with the care of people with dementia, through a lens of consistency with published guidelines. my results demonstrate wide variations in the proportion of physicians who report providing guideline-consistent dementia care. for example, i saw a large difference in the percentage of physicians who report providing a formal memory test, fundamental for an accurate diagnosis of dementia. similar variations were seen in the use of guideline-recommended therapeutics, referrals to specialists and referrals to community services, the first two of which assist in managing the more difficult symptoms of dementia. there was less variation in other services assessed, and encouragingly, exclusionary blood work and provision of counselling are generally widely used. the large variations in the dementia care processes surfaced by this systematic review are eye-opening as they are an indication that patients are not receiving appropriate, equitable or in some cases adequate care despite widely available guidelines. this in turn can have significant consequences for the accuracy of their diagnosis, access to resources, management and their future outcomes of care. this is the first systematic review to summarize and examine the variations reported in the literature. these results also have important implications as they corroborate the qualitative literature around barriers to providing good dementia care which include inadequate time to fully explore issues during appointments, challenging behavioural symptoms, problematic physician attitudes toward providing care to individuals with dementia resulting in age discrimination, lack of interdisciplinary teams to appropriately address the multifaceted psychosocial issues and difficulty accessing community resources resulting in patterns of inequity , , , , . while these results add to our understanding of actual physician dementia practice patterns, and highlight the gap between actual practice and guideline- recommended care, there are some reasons for caution. there are several factors unrelated to physician practice decisions or styles that could contribute to the variations reported in this literature. these might include, for example, geography, patient demographic characteristics and changes in guideline recommendations over time. the heterogeneity of study populations and settings made it impossible to assess these factors in the review. . . persistent variation – getting past self-report using administrative data as a counter to some of the limitations previously highlighted in the systematic review, in chapter , i conducted an analysis of the provision of dementia care utilizing population-based health service administrative data from bc. my population-based study of community-dwelling seniors demonstrated that a high percentage of b.c. dementia patients had been receiving guideline-consistent diagnostic care processes. this finding corroborated trends surfaced in my systematic review. however, on the treatment side, use of pharmacological interventions such as anti-psychotics (typical and atypical) and benzodiazepines, which are generally not recommended in this population (in which such prescribing is often contra-indicated), was frequent. the overall rates for discretionary dementia care management processes (specialist referrals, counselling and in-office examination) were found to be generally low. more importantly, i found that variations in dementia care management processes were influenced by income, age and geography. limiting the analyses to community-dwelling seniors makes the conclusions particularly compelling from a policy perspective, as many seniors have expressed a wish to remain in the community longer. physician practice patterns are very different in ltc, where rates of pharmacological intervention tend to be higher since many of the patients have complex neuropsychiatric symptoms that prevent them from living in the community safely and there is a larger team providing primary care services . the frequent use of antipsychotics and benzodiazepines was not anticipated for community- dwelling seniors; this has serious policy and health consequences due to an association with falls, increased risk of cerebrovascular adverse events and, worse, increased risk of mortality , , , . variations in the guideline-consistent dementia care management processes were influenced by income and age. canada functions under a universal, first-dollar coverage of hospital and physician services which means there are no explicit financial barriers to access those components of care. the variation related to age may be due to the possibility of age discrimination in practitioners’ attitudes toward providing early diagnosis and broader interventions to older individuals. this has been described previously as a barrier to provision of good dementia care, with physicians’ negative perceptions in diagnosing dementia being associated with therapeutic nihilism, stigma and ageism . other possible reasons for age-associated differences in care processes is the lack of time that physicians have to appropriately support older individuals with more complex symptoms, and age-related difficulty accessing specialists with limited availability . however, insofar as income and age are unrelated to patient need for service, my results indicate potential inequity and require further attention. . . transitions – the year of diagnosis and disruption the prevalence of multiple moves, or transitions, is high in the elderly , and poses a serious challenge to the continuum of care and the safety of the patient as demonstrated by medication errors, quality deficiencies, preventable hospital readmissions and increased mortality risk – . three previous studies have assessed transitions longitudinally, ranging from eighteen months to seven years . however, no previous literature has tracked patients from the year of diagnosis and followed them over such an extensive period (ten years), nor have any of the longitudinal studies examined the factors that contribute to transitions. my contributions to the literature are three. first, i demonstrate that the year of diagnosis and the year of death are the points in care when transitions are highest. this is important information for clinical and policy decision-makers. end-of-life literature long ago identified the year of death (and often the year prior to death) as a period of high transitions with fragmented care and rushed decision-making often leading to overly aggressive interventions to prolong life , , , . understanding the end-of-life care trajectory and attempting to put in place better quality indicators and measures to ensure individuals’ wishes are respected is still a work in progress. what is new here is that my study also identifies the year of diagnosis as an important point in the care trajectory, with the high number of transitions representing a second (and of course earlier) potential point of intervention for decision-makers. second, the transitions occurring during the year of diagnosis were dominated by hospitalizations, though moves from community to ltc are also highest in this year. primary care physicians control many of the services provided in the year of diagnosis and, given the right resources, can connect patients with appropriate support services early to reduce the number of transitions. increased home support, better integration of primary and community care and expanding community-based palliative care are potential strategies described in more detail later. particularly in the year of diagnosis, higher morbidity, living in health authorities with smaller urban centres and having behavioural symptoms of dementia are strongly associated with the number of transitions experienced. these are factors that allow the identification and targeting of patients at high risk of multiple transitions, for early intervention. finally, the focus of most guideline-consistent dementia care processes is during the year of diagnosis. as the results from chapter demonstrate, receiving guideline- consistent dementia care is associated with fewer transitions. this highlights the importance of finding ways to support physicians in providing better guideline- consistent care that can mitigate transitions during the year of initial diagnosis. . . the effectiveness of guideline-consistent dementia care given the importance of the year of diagnosis in a dementia patient’s life, guidelines play a key role as their emphasis is on accurate diagnosis and management. the diagnostic processes obviously cluster in the year of initial diagnosis. but to a significant extent, decisions and patterns related to management are also set in motion in that year. while guidelines have been shown to be associated with better outcomes for patients – , studies have also demonstrated hesitancy on the part of physicians in implementing these guides and a consistent lack of concordance with best practice recommendations leading to under-diagnosis and poor management , , , , , . my work in the previous chapter adds further evidence of the value of following guideline- consistent care. my results also confirm that continuity of care is highly associated with fewer transitions, regardless of whether it is the year of diagnosis, death, or move to ltc. while these results demonstrate association not causality, there is a hypothesized causal pathway. guideline-consistent dementia care encourages early diagnosis (with the use of diagnostic tools such as lab tests and imaging), which would allow for early management of dementia. early and appropriate management both through guidelines and high quality primary care would allow physicians to educate patients and their caregivers on what to expect before the dementia has progressed too far in severity. they can then monitor that progress, adjusting management of dementia and any co- morbidities before patients reach crisis, which is what triggers multiple hospitalizations. for example, some recommended management process from dementia guidelines include: reconciliation of prescriptions which can prevent medication-error induced hospitalizations; appropriate counselling which helps patients and caregivers understand the prognosis of dementia, anticipate further decline, the effects of dementia on self-management of other chronic diseases and develop strategies to deal with these issues before they become acute; referrals to specialists who can provide additional monitoring and specialized care in difficult cases so that patients do not seek that care in emergency rooms; and referrals to community services that can assist patients and caregivers to manage care before caregivers reach a point of crisis. continuity of care becomes particularly important in being able to monitor the patient, knowing their medical history and therefore being able to address issues before it reaches the point where a patient is hospitalized. a number of policy implications emerge. recent data indicate that patients with a diagnosis of dementia account for a large proportion of alternate level of care (alc) hospitalizations and alc hospital days , . alc hospitalizations describe patients in acute care beds waiting to be moved to a different, more appropriate, care setting, most frequently residential care . prolonged stays in alc are associated with serious adverse outcomes, including functional decline and infections; they are particularly traumatic for individuals with dementia . as previously discussed, early diagnosis and management of dementia based on guidelines could conceivably address some of these patients’ (and caregivers’) needs prior to a crisis that triggers an acute hospitalization. therefore, guideline-consistent dementia care could not only ensure better outcomes for patients but could also reduce the burden of dementia patients on alc beds. interventions to reduce transition are likely to have the most effect if aimed at this diagnosis period. . strengths and limitations each research chapter discusses the limitations associated with the methodological approach, data and interpretation of results. therefore, here i will limit my discussion to the strengths and limitations of the overall thesis. a key strength of the analyses described here is the use of health care administrative data for the entire population of bc newly diagnosed with dementia, and the ability to follow a cohort over a period of eleven years. this allowed me to circumvent the biases inherent in other studies examining guideline-consistent dementia care because of their predominant use of self-reported survey data with limited sample sizes, limited geographic coverage and varying sampling strategies. the population-based nature of my research helps with external validity, meaning my results are more generalizable, at least to other provinces, and to other countries with similar public health care benefit structures that might affect access to care for patients with dementia. as well, the ability to follow a cohort over eleven years allowed me to assess trends over the entire arc of a patient’s care trajectory. the median survival time of individuals with dementia in my cohort, from point of diagnosis, was nearly years, and a ten-year follow up period enabled complete capture of all points between diagnosis and death for % of the cohort (i.e. only % of the original -diagnosed cohort was alive at the end of the study period). another important strength in this study design was the ability to identify individuals newly diagnosed with dementia. by being able to focus on this crucial point in the trajectory, i was able to measure receipt of guideline-consistent dementia care during the year of diagnosis and highlight the peak in transitions that occurred during this period at a population level. the use of administrative data allowed me to trace the healthcare utilization patterns of this cohort from diagnosis and up to nine years post diagnosis, while giving me a wealth of patient, physician and system characteristics to explore and control for in my analysis to tease out specific associations. despite the advantages of using administrative data, they also bring with them some important limitations. administrative data are subject to transcription and other quality errors, and missing information, in addition to problems with loss of subjects which occur regardless of the source of data. nevertheless, the linked data sources i used have been shown to have good validity . i was not able to measure all of the dementia care processes included in the dementia care guidelines, particularly the use of formal memory tests and the specific role of physicians in referrals to hcc services which play such a key supportive role in the lives of individuals with dementia and their caregivers. i also did not have access to data that would have given me in-depth demographic and functional data which would have been valuable in determining living arrangements, caregiver status and dementia severity. these variables have been shown to play mediating roles in dementia care. however, previous work has also shown that the presence of a caregiver has a larger role to play with regard to receipt of home care, remaining in the community and institutionalization , , , but not with regard to transitions that are primarily driven by hospitalizations or receipt of guideline- consistent care . these would be expected to be more heavily influenced by physician decisions. i was able to develop a proxy variable for caregiver status which was used for a sensitivity analysis described in chapter , section . . . the results of that analysis allowed me to proceed with subsequent analyses, confident that caregiver status was not going to create any significant omitted variable biases. all the healthcare utilization data i used are for services provided by physicians paid through the fee-for-service system. this excludes services provided by physicians paid through alternative payment arrangements. while in general less than percent of physicians are paid exclusively through non-fee-for-service methods, this does mean that my analyses likely under-count the incidence of dementia and are missing the care utilization data for those patients. . future directions specific policy recommendations based on the result of each research objective have been described in section . , however there are some overarching observations and recommendations that are important to highlight at this juncture. my findings indicate differences in actual care provided and wide variations in receipt of guideline-consistent dementia care that are influenced by age, income and geography. the lack of concordance despite evidence of better outcomes for patients has continued to be a major issue and several factors have been previously identified . i also provide evidence that transitions peak in the year of diagnosis and that receiving guideline-consistent dementia care in particular is associated with better outcomes, i.e. fewer transitions. there would appear to be four recommendations that fall rather naturally out of the findings reported here. the first relates to physician training. if we are to see more physicians adopt guideline-consistent care for dementia patients, a reframing and refreshing of physician education may be necessary. exposure needs to go beyond the pathophysiology and pharmacological treatment of dementia as a disease. instead education should emphasize dementia as a chronic, complex condition which can benefit from timely diagnosis, comprehensive biopsychosocial treatment and management in the context of the patient’s other conditions. second, a shift in focus for guidelines needs to occur. guidelines would be more effective if they provided more detail around long-term management. for example, physicians should be provided with evidence-based, relevant environmental interventions for behavioural symptoms which are often the most difficult management aspect of dementia , . studies have demonstrated that verbal redirection, reassurance, reduced stimulus, and determining triggers and eliminating them are valuable interventions. but these often require more frequent monitoring and interdisciplinary team resources for effectiveness , . another example is the management of dementia when patients have multiple major co-morbidities (more often the rule rather than the exception); this tends to be a barrier to implementing guideline-consistent care. the field has not yet fully recognized the complexity of providing care in this context, but examples from other fields such as cancer care could be useful where for example reliable and valid instruments that assess outcomes and care for older cancer patients with pre-existing co-morbidities are being developed – . third, these results indicate the need to recognize that primary care physicians alone may not be able to provide adequate dementia care and that more resources are needed to support them . patients living at home require a cooperative and coordinated response from physicians, hcc and social services . fortunately, several promising models of care have been piloted and may provide a useful foundation. case management programs that provide individualized, flexible responses to people’s needs by integrating care across clinical and social services with high intensity support have been shown to be particularly effective when appropriately implemented . these case management programs often include collaborative, interdisciplinary teams with the primary care physician at the core and including other service providers such as social workers, psychiatrists and advanced practice nurses who assist with assessing and monitoring care. collaborative, interdisciplinary teams have been piloted in multiple clinical trials and have yielded better outcomes relating to incidence of adverse behavioural symptoms, quality of patient care, caregiver health scores and adherence to guidelines , , – . another example is the increased role of skilled staff such as physician assistants, care coordinators and nurse practitioners in situations of workforce or financial limitations. after some training, these skilled staff work in a dyad with the physician to provide better case management and referral services , , . this is thought to be particularly effective in more rural settings in the absence of access to specialists or community resources . last are programs like first link, used by the alzheimer’s society of canada , . these programs work with physicians to connect people newly diagnosed with dementia with services offered through the alzheimer’s society. in this case, community service providers actively work with the physician to refer patients to the program, making them aware of services they can refer patients to. since many patients do not contact community resources (despite a referral from the physician) until in crisis, the first link program removes the onus of responsibility from the patient by reaching out first and linking patients with programs as soon as possible. preliminary analysis has demonstrated that primary care physicians had improved knowledge on community support services available, better relationships/partnerships between physicians and community resource staff, and more effective coping by caregivers of individuals with dementia . the fourth recommendation is to further explore interventions that are effective at reducing transitions, particularly during the year of diagnosis. to be clear, not all transitions are bad and some transitions are certainly necessary. however, not developing care sensitive long-term plans for individuals can result in more transitions than are necessary. several interventions have been implemented that have been shown to be promising at reducing unnecessary transitions. for example, improving early, advanced care planning that ensures appropriate care consistent with individuals’ wishes (e.g. medical orders for life sustaining treatment or hospitalizations) has been shown to be effective both at reducing transitions and deaths in hospital , , , . this could prove to be particularly important for individuals with dementia (most of who are also multi-morbid) at end-of-life, but also perhaps earlier on. given the predictable cognitive decline associated with dementia, discussing scope of care, care settings and appointing a substitute decision maker while the person with dementia is still able to contribute to these decisions could mean better quality of care and a lower burden on the caregiver who is often forced to make decisions that leave feelings of guilt and depression . a second example of an intervention that may decrease transitions is the use of patient navigators. patient navigators are skilled staff such as registered nurses or trained educators who act as the patient’s advocate and personal guide while the patient is in hospital. they coordinate patient care, communicate with the patient, their family and physician and help oversee care transitions both within the hospital and post-discharge. the program was initially implemented in cancer care to improve access to care for underserved patients but has now been adopted by several other units in chronic and complex care . one hospital that implemented the program for their complex inpatient care unit (the majority of whom are elderly patients with dementia) reported shorter lengths of stay in hospital and lower hospital -day readmission rates . using patient navigators during the year of diagnosis of dementia has the potential to significantly influence the number of transitions experienced in that year (i.e. reduce rates of re-hospitalization) as well as the quality of care and should be more carefully explored. the value of integrating care across settings cannot be emphasized enough. my results and those of the other studies cited in this thesis highlight how essential it is to provide continuity of care across care settings. . areas for further inquiry while i highlight some policy implications from my research in section . above, there are still many further areas of inquiry that would help add to our understanding of patterns and trajectories of care for people with dementia. i highlight a few of these here. first, the outcome of interest for this thesis was the number of transitions for individuals, examining a -year follow-up period from initial diagnosis of dementia, or until death. this is not the only potential outcome of interest. future research could examine effects on the quality of life of patients, as well as the quality of life and health outcomes for caregivers. another important outcome is length of time spent at home (i.e. not in ltc) after diagnosis. i was not able to pursue that outcome because of a lack of comprehensive information on functional and cognitive status, living arrangements and presences of informal caregivers, all of which are known to affect an individual’s ability to remain in the home , , . indeed, future research that is able to incorporate details on the ongoing functional and cognitive status of individuals with dementia and indicators of social support would greatly enhance the conclusions that can be drawn. one possible source of this information is the interrai suite of minimum data sets, which are standardized assessment tools designed to gather information for both assessment and care planning . interrai data collection has been mandated since the mid to late s in bc’s home and community care offices for assessment for both home care and ltc. second, there may be interest in understanding more than just the number of transitions, but also the time between transitions and factors that influence that timing. alternatively, understanding the timing and kinds of transitions that are associated with increased risk of functional decline and medical complications may have useful policy planning implications. again, this line of inquiry would be aided with a fuller understanding of patients’ living arrangements, functional and cognitive status. finally, there is more research that could be done on the best approaches and supports to increasing provider awareness of appropriate dementia care, and in particular the effects of community supports that are available such as the first link program . these programs are thought to be particularly important for providing caregivers with additional support and information that physicians may be unable to provide due to limited time, knowledge or training. . conclusion the results of my research demonstrate that the need to better understand the patterns of care experienced by individuals with dementia is paramount to providing more appropriate, strategic support to the physicians who manage their care as well as the patients and caregivers themselves. the bc ministry of health and the federal ministry of health have both identified dementia as a growing concern for canadians who are looking for a responsive healthcare system that provides sustainable, quality care 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(millwood). , – ( ). . konetzka, r. t., spector, w. & limcangco, m. r. reducing hospitalizations from long-term care settings. med. care res. rev. , – ( ). . alzheimer’s society of canada. first link program. at <http://www.alzheimer.ca/en/about-dementia/for-health-care-professionals/first-link> . mcainey, c., hillier, l. & stolee, p. first link saskatchewan demonstration project: final evaluation report. – ( ). . molloy, d. w. et al. systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. jama , – ( ). . molloy, d. w. & guyatt, g. h. a comprehensive health care directive in a home for the aged. can. med. assoc. j. , – ( ). . dohan, d. & schrag, d. using navigators to improve care of underserved patients: current practices and approaches. cancer , – ( ). . kwan, j. l., bell, c. m., morgan, m. w. & stewart, t. e. inpatient patient navigator program reduces length of stay. the harvard business review ( ). . the world health organization. dementia: a public health priority. – ( ). . canadian healthcare association. home care in canada: from the margins to the mainstream. canadian healthcare association – ( ). . morris, j. et al. resident assessment instrument (rai): rai-mds . user’s manual, canadian version. – ( ). appendix a, chapter a. objective of study protocol the objective of this review is to assess the evidence for variations in physician practice patterns in caring for people with dementia in a systematic way. objective : are there variations in clinical services provided to seniors? objective : are there variations in referral services for additional care (e.g. home care, adult day care, respite care etc.) provided to community dwelling seniors? a. method a. . study design this systematic review will include all quantitative study designs including experimental, quasi experimental (pre-post studies, interrupted time-series) and observational (case control, cohort, cross-sectional) studies. while randomized control trials are the optimal design, it is not anticipated that there will be many conducted in this field, therefore quasi-experimental and observational studies will also be included. editorials, commentaries and letters that do not report information on original empirical results will not be included. qualitative studies will also be indexed, but separated. a. . population/comparators general physicians providing care to seniors years or older diagnosed with dementia, both primary and secondary diagnoses. specialist providing dementia care will also be evaluated separately if possible. if it is possible to investigate sub-populations of patients, i will do so (i.e. alzheimer's disease, parkinson's disease, frontal temporal dementia, vascular dementia) as well as differentiate between home care and residential care patient population when possible. a. . interventions any clinical service or combination of clinical services detailed as appropriate for dementia care management (hereafter referred to as ‘dementia care processes’). these are all services outlined by national and international guidelines such as physical checkup, history taking, formal memory testing, neuropsychological testing, disclosure of diagnosis, imaging, blood workups, prescriptions for dementia, depression, behavioural challenges, non-pharmaceutical therapeutics, environmental interventions, counseling and referrals to specialists. referral to services for additional care or support will also be included such as home and community services, respite care, support groups, alzheimer’s association, adult day centres etc. a. . outcomes any quantitative clinical outcome measures (e.g. rates, prevalence, odds ratios, rate ratios etc.), both unadjusted and adjusted. a. . inclusion and exclusion criteria inclusion criteria:  all english language studies  peer reviewed and grey literature  published prior to march st ,  quantitative experimental, quasi-experimental and observational studies exclusion criteria:  published studies not reporting on original empirical results  conference abstracts, book chapters  studies focused exclusively on prescription patterns of acetyl-cholinesterase inhibitors, antipsychotic or psychotropic medications  studies focused on caregiver patterns of care  physician practice patterns assessed for variability analyzed at a patient-level  presenile dementia or age and below  non-primary care setting  only specialist practice patterns  vignettes (i.e. only assess actual services provided) a. review process a. . search method i will employ a two-stage search strategy for this review. in consultation with a research librarian, i will develop a search strategy for the following electronic subscription databases for primary studies: web of knowledge database (isi/thompson), pubmed, science direct, medline (ovid), psychinfo and embase (ovid). to expand my search for grey literature, i will do a preliminary search in google scholar for the first results. the search strategy will be adapted to each database based on its thesaurus or medical subject headings. an individual search with each of the search terms will also be conducted to ensure that no relevant citations are missed. the concept of practice patterns and dementia will be combined with filters for language (english only) and publication dates where possible. to increase the probability of capturing all potentially relevant studies, i will perform a secondary search by looking at the reference list of key studies that met my inclusion criteria. a. . data collection and extraction procedure after consultation with a librarian, the literature search will be conducted by reviewer (ss). the search results will be screened by title for potential inclusion in the review (ss). all studies that meet inclusion criteria by title will be included for abstract review. abstracts will be extracted by reviewer (ss) and the abstract review will be conducted independently by both reviewers (ss and jp). results will be compared and disagreements resolved by discussion until consensus is reached. reviewer (ss) will then obtain full-texts of all articles that met inclusion criteria after abstract review and store them in the reference manager mendeley’s shared online folder, accessible only by both reviewers. full-texts will then be reviewed to determine if studies continue to meet inclusion criteria. particular attention will be paid to the participants (type of physicians assessed), level of analysis (patient or physician-level), methodology, dementia care processes assessed and the outcome reported. only studies indentified by both reviewers will be included for data extraction. if consensus cannot be reached, a third reviewer can be requested for independent assessment. a data extraction tool will be developed by reviewer (ss) to extract all relevant data. this tool will be tested by both reviewers independently on three studies drawn at random from the final list of included studies. once the tool’s effectiveness has been agreed upon by both reviewers, it will be used on the remaining studies. independent data extractions will be conducted by each reviewer who will then meet to compare and discuss the extracted data until consensus is reached. a. . critical appraisal reviewer (ss) will conduct a critical appraisal of the results of each study. the quality of the studies may not be assessed if there are a limited number of studies. the following criteria will be considered:  the magnitude of difference in the outcome measurement across studies  the potential for bias (classification, selection, measurement bias)  publication year and the availability of best practice guidelines appendix b, chapter table b. - cross-walk mapping a sample of drug identification numbers to corresponding anatomical therapeutic chemical groups for medications of interest drug type drug identification number anatomical therapeutic chemical group acetyl-cholinesterase inhibitor (excluding memantine) , , , , , , , , n da n da n da n dx memantine , , , , n dx antipsychotics , , , , , , , , n ah n ah n ah n ax trazodone , , , , n ax benzodiazepines , , , , , , n ba n ba n ba antidepressants , , , , n aa n aa (full table available upon request) appendix c, chapter table c. – baseline characteristics of individuals newly diagnosed with dementia in / who died during study period characteristics patients with dementia (n= , ) age in years (mean+ sd) . + . - . % - . % + . % sex* male . % female . % income quintile (mean+ sd)* . + . - lowest income . % - lower income . % - medium income . % - higher income . % - highest income . % multiple chronic disease (not including dementia) chronic diseases . % chronic disease . % chronic diseases . % + chronic diseases . % number of major adgs (mean+ sd) . + . treatment prevalence of major chronic diseases hypertension . % depression . % arthritis or osteoarthritis . % cancer . % congestive heart failure . % diabetes . % cardiovascular disease . % stroke . % chronic obstructive pulmonary disease . % chronic kidney disease . % liver disease . % health authority* interior . % fraser . % vancouver coastal . % characteristics patients with dementia (n= , ) vancouver island . % northern . % *missing data: sex unknown= , income unknown= , quintile ha unknown= table c. a – percentage of individuals who died during study period who received laboratory testing and imaging processes outlined in guidelines stratified by patient characteristics laboratory testing imaging patient characteristics complete hematology profile serum electrolytes serum calcium serum glucose thyroid stimulating hormone b vitamin head computed tomography age - - + sex* female male income quintile* lowest low medium high highest multiple diseases diseases disease diseases + diseases health authority* interior fraser vancouver coastal vancouver island northern table c. b – percentage of individuals who died during study period who received prescriptions and dementia care management processes outlined in guidelines stratified by patient characteristics prescriptions counselling and specialist referral patient characteristics achi antipsychotics trazodone antidepressants benzodiazepines examination in-office counselling in-office referral to specialist age - - + sex* female male income quintile* lowest low medium high highest multiple diseases diseases disease diseases + diseases health authority* interior fraser vancouver coastal vancouver island northern table c. a - proportional odds ratio for factors associated with receiving guideline-consistent care from multivariate modelling adjusted odds ratio ( % confidence interval) laboratory tests imaging independent variables complete hematology profile serum electrolytes serum calcium serum glucose thyroid stimulating hormone b vitamin head computed tomography age - . . . . . . . - . ( . - . ) . ( . - . ) . ( . - . )† . ( . - . )‡ . ( . - . )† . ( . - . )† . ( . - . )* + . ( . - . )‡ . ( . - . )* . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ sex female . . . . . . . male . ( . - . ) . ( . - . ) . ( . - . )‡ . ( . - . ) . ( . - . )‡ . ( . - . )‡ . ( . - . )† income quintile - lowest . . . . . . . - low . ( . - . ) . ( . - . ) . ( . - . )† . ( . - . ) . ( . - . ) . ( . - . )† . ( . - . ) - medium . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) - high . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) - highest . ( . - . )* . ( . - . )* . ( . - . )† . ( . - . ) . ( . - . ) . ( . - . )‡ . ( . - . ) multiple chronic diseases diseases . . . . . . . disease . ( . - . ) . ( . - . )‡ . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) diseases . ( . - . ) . ( . - . )‡ . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) + diseases . ( . - . )* . ( . - . )‡ . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . )* . ( . – . )‡ health authority interior . . . . . . . fraser . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ vancouver coastal . ( . - . ) . ( . - . ) . ( . - . )‡ . ( . - . )‡ . ( . - . )† . ( . - . )‡ . ( . - . )‡ vancouver island . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ northern . ( . - . )† . ( . - . )† . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ . ( . - . )† ‡ - p value < . † - p value < . * - p value < . table c. b – proportional odds ratio for factors associated with receiving guideline-consistent prescriptions and dementia care management processes, from multivariate modelling adjusted odds ratio ( % confidence interval) prescriptions management indepen- dent variables achi antipsychotics trazodone antidepressant benzodiazepine† complete examination in- office individual counselling in- office referral to specialist re. dementia age - . . . . . . . . - . ( . - . )† . ( . - . ) . ( . - . ) . ( . - . )‡ . ( . - . ) . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ + . ( . - . )‡ . ( . - . ) . ( . - . ) . ( . - . )‡ . ( . - . ) . ( . - . )‡ . ( . - . )‡ . ( . - . )‡ sex female . . . . . . . . male . ( . - . )* . ( . - . ) . ( . - . ) . ( . - . )‡ . ( . - . )‡ . ( . - . ) . ( . - . )† . ( . - . )* income quintile - lowest . . . . . . . . - low . ( . - . ) . ( . - . ) . ( . - . )* . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) - medium . ( . - . )‡ . ( . - . )* . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . )* . ( . - . ) - high . ( . - . )* . ( . - . ) . ( . - . )* . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . )* . ( . - . ) - highest . ( . - . )‡ . ( . - . )† . ( . - . )† . ( . - . )* . ( . - . ) . ( . - . ) . ( . - . )‡ . ( . - . )‡ multiple chronic diseases diseases . . . . . . . . disease . ( . - . ) . ( . - . ) . ( . – . ) . ( . - . )‡ . ( . - . ) . ( . - . )* . ( . - . ) . ( . - . ) diseases . ( . - . ) . ( . - . ) . ( . - . ) . ( . – . )‡ . ( . - . )* . ( . - . ) . ( . - . ) . ( . - . ) + diseases . ( . - . )‡ . ( . - . ) . ( . - . )† . ( . – . )‡ . ( . - . )‡ . ( . - . ) . ( . - . ) . ( . - . ) health authority interior . . . . . . . . fraser . ( . - . )‡ . ( . - . )‡ . ( . - . )* . ( . - . ) . ( . - . )† . ( . - . )‡ . ( . - . ) . ( . - . )‡ vancouver coastal . ( . - . ) . ( . - . )† . ( . - . ) . ( . - . )† . ( . - . )‡ . ( . - . )* . ( . - . )† . ( . - . )‡ adjusted odds ratio ( % confidence interval) prescriptions management indepen- dent variables achi antipsychotics trazodone antidepressant benzodiazepine† complete examination in- office individual counselling in- office referral to specialist re. dementia vancouver island . ( . - . )* . ( . - . )* . ( . - . ) . ( . - . )* . ( . - . ) . ( . - . )‡ . ( . - . )† . ( . - . ) northern . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . )‡ ‡ - p value < . ‡ - p value < . * - p value < . appendix d, chapter table d. - longitudinal health care use year (- ) year year year year year year year year year year / / / / / / / / / / / total cohort at beginning of year (n) , , , , , , , , , , , cohort survival (%) % % % % % % % % % % % hospital use no hospital stay (n) , , , , , , , , , , had hospital stay (n) , , , , cohort with hospital stay (%) % % % % % % % % % % % mean number hospital admissions for those hospitalized (mean ± sd) . . . . . . . . . . . mean los at hospital for those hospitalized (mean ± sd) . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . transitions experienced a transition (n) , , , , , , cohort who experienced atleast one transition (%) % % % % % % % % % % % cohort who experienced + transitions (%) % % % % % % % % % % % total transitions (mean ± sd) . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . table d. – principal diagnoses for patients newly diagnosed with dementia in hospital only principal diagnosis proportion of patients (n= ) dementia . % fracture of femur . % pneumonia . % heart failure . % stroke . % rehabilitation care . % wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ complementary and alternative therapies for autism spectrum disorder review article complementary and alternative therapies for autism spectrum disorder natascia brondino, laura fusar-poli, matteo rocchetti, umberto provenzani, francesco barale, and pierluigi politi department of brain and behavioral sciences, section of psychiatry, university of pavia, via bassi , pavia, italy correspondence should be addressed to natascia brondino; natascia.brondino@libero.it received january ; revised march ; accepted march academic editor: karen j. sherman copyright © natascia brondino et al. this is an open access article distributed under the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. background. complementary and alternative medicine (cam) represents a popular therapeutic option for patients with autism spectrum disorder (asd). unfortunately, there is a paucity of data regarding the efficacy of cam in asd. the aim of the present systematic review is to investigate trials of cam in asd. material and methods. we searched the following databases: medline, embase, cochrane database of systematic reviews, cinahl, psychology and behavioral sciences collection, agricola, and food science source. results. our literature search identified clinical publications. after the title/abstract screening, publications were obtained for detailed evaluation. after detailed evaluation studies were included, from hand search of references we retrieved additional studies for a total of . conclusion. there is no conclusive evidence supporting the efficacy of cam therapies in asd. promising results are reported for music therapy, sensory integration therapy, acupuncture, and massage. . introduction autism spectrum disorder (asd) is a heterogeneous group of neurodevelopmental conditions characterized by the pres- ence of impaired social communication and reciprocity and of restricted and stereotyped pattern of behaviors and interests. in the last few decades, the prevalence of asd has increased dramatically, configuring a sort of “epidemics” [ ]. usually, it affects boys more than girls ( : ratio) and it is a lifelong condition, generally diagnosed in early childhood [ ]. despite the public concern about this phenomenon and the interest of the scientific community, there are still controversies about asd etiology. it is hypothesized that asd is caused by a combination of genetic and environmental stimuli, but no clear pathogenesis has been defined [ ]. effective therapies for asd core symptoms have not yet been developed. evidence-based first-line treatments are repre- sented by behavioral therapies (such as teacch or aba) [ ]. use of pharmacological medications (such as risperidone or aripiprazole) [ , ] is usually limited to treating behavioral symptoms of the disorder like irritability or aggressiveness. unfortunately, despite the dramatic effect sizes for these problem behaviors, the pharmacological approach to core symptoms has led to inconclusive results and is sometimes burdened by severe adverse events [ ]. families of children with autism are usually worried by potential drug side effects and are continuously looking for treatments which are more secure. as a consequence, in recent years, there has been an increasing interest for complementary and alternative medicine, not only in asd, but also in several pathological conditions. according to the definition of the cochrane collabo- ration, “complementary and alternative medicine (cam) is a broad domain of healing resources that encompasses all health systems, modalities, and practices and their accompa- nying theories and beliefs, other than those intrinsic to the politically dominant health system of a particular society or culture in a given historical period. cam includes all such practices and ideas self-defined by their users as prevent- ing or treating illness or promoting health and well-being. boundaries within cam and between the cam domain and that of the dominant system are not always sharp or fixed.” cams have become very popular therapies among adults and children with asd [ ]. in , according to an internet hindawi publishing corporation evidence-based complementary and alternative medicine volume , article id , pages http://dx.doi.org/ . / / http://dx.doi.org/ . / / evidence-based complementary and alternative medicine survey involving a sample of families from the autism society of america and the autism organizations worldwide, each family with a child with asd has tried a mean of treatments [ ], among which many were cams. particularly, it has recently been estimated that % of children with asd are treated with cam [ ]: cam usage appears to be more common among caucasian families with high economic income. it is of note that even before the diagnosis, nearly one-third of children have already received a cam treatment and % of this population has used a potentially harmful therapy such as chelation [ ]. previously, higher cam usage among families with an asd child had been reported (ranging from to %) [ , ]. compared to the work of perrin et al., previous studies considered a wider range of cams and enrolled older subjects as participants, which could explain the resulting higher figures. type of cam use appears to be stable over time: biological therapies, in particular elimination or special diets, are the most frequent [ – ]. despite its popularity, the use of cams in asd is controversial; recently more methodologically sounded trials have been designed and conducted in order to test the efficacy of different cam therapies, and the knowledge about cams is moving from an anecdotal form to a more scientific one. the aim of the present systematic review is to give a comprehensive overlook of the efficacy of cam in asd. . material and methods in october , we searched the following databases: med- line, embase, cochrane database of systematic reviews, cinahl, psychology and behavioral sciences collection, agricola, and food science source. the search terms were as follows: ‘asd’/exp or asd or ‘autism’/exp or autism and (‘spectrum’/exp or spectrum) and (‘disorder’/exp or disorder) or autistic* and complementary or alter- native and (‘medicine’/exp or medicine) or herbal or ‘music’/exp or music and (‘therapy’/exp or therapy) or ‘dance’/exp or dance and (‘therapy’/exp or therapy) or ‘diet’/exp or diet or cam or ‘yoga’/exp or yoga or supplement or plant or botanical. the search strategy had no time restriction but was limited to articles in english. additionally, all recovered papers were reviewed for further relevant references. researchers in the field were reached to obtain additional or unpublished data, if available. two researchers (natascia brondino and laura fusar- poli) independently reviewed all information about the arti- cles provided by the databases. any discrepancies were solved by consensus. our inclusion criteria were broad on study design, including both randomized and open label trials, yielding primary results on the effects of cam administration in core symptoms of asd. asd was defined according to internationally valid diagnostic criteria such as the interna- tional classification of diseases (icd) or the diagnostic and statistical manual of mental disorders (dsm). we excluded case report and case series. we did not consider off-label drugs (such as oxytocin, secretin, and antibiotics) as cam. additionally, we did not include trials on melatonin in asd (for this purpose see the review written by tordjman et al. [ ] in ) as it is generally used to treat sleep problems in autistic patients and not intended to treat core symptoms of asd. . results our literature search identified clinical publications. after the title/abstract screening, publications were obtained for detailed evaluation. after detailed evaluation studies were included; from hand search of references we retrieved additional studies for a total of . . biologically based treatments biological cam treatments usually include dietary interven- tions, vitamin supplements, and herbal remedies [ ]. there are several critical mechanisms that could be advocate to explain the biological effect of cam: in particular, researchers in the field have pointed out how natural killer (nk) cell activation or immune system modulation may play a key role in several biological cams (i.e., elimination diets or probiotics) [ ]. additionally, other potential pathways involved in biologically based cams include antioxidant and anti-inflammatory activity (i.e., flavonoids and probiotics) [ ], neuroprotection (i.e., omega ) [ ], or modulation of the neurotransmitter-induced response (i.e., l-carnosine) [ ]. in addition, more discussed cams (hyperbaric oxygen therapy (hbot) or chelation) could be included in this section as the rationale for their use relies on a biological mechanism. in particular, chelation tries to eliminate toxic metals from blood [ ] while hbot aims at enhancing blood oxygen level in order to determine a positive impact on several neurological functions such as language, memory, and cognition [ ]. . . dietary interventions. among cams currently used in autism, elimination diets, especially gluten and/or casein- free diets, are one of the most popular (table ). in fact, levy and hyman have reported that in every children is put on this nutritional regimen [ ]. the rationale behind the use of a specific dietary regimen relies on the presence of specific food allergen (such as casein or gluten) which could enhance immune response in predisposed subjects or trigger autoimmunity [ , ]. another theory is that gluten and casein may originate opiate-active metabolites in the gut that could reach the systemic circulation (the “opioid excess theory” of autism) [ ]. additionally, several gastrointestinal abnormalities have been observed in subjects with asd, such as increased permeability of the gut barrier and bacterial overgrowth which could benefit from elimination diet [ , ]. elimination diets showed modest clinical effect in treat- ing children with attention-deficit hyperactivity disorder (adhd) [ ], which shares some features with asd [ ]. focusing on autism, the first studies investigating the effi- cacy of a gluten- and casein-free diet were conducted in the s and were mostly uncontrolled trials (i.e., [ – ]). evidence-based complementary and alternative medicine ta bl e : d ie ta ry in te rv en tio n in a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs o ut co m e m ea su re fi nd in gs c om m en ts k ni vs be rg et al . [ ] r an do m iz ed ,p la ce bo co nt ro lle d, si ng le bl in d, pa ra lle lg ro up d ur at io n: m on th s n = (g en de rn ot re po rt ed ) a ge : – m on th s g lu te n- an d ca se in -f re e di et (g fc f) n = n or m al di et 𝑛 = d ip a b (a d an is h as se ss m en to fa ut is tic tr ai t) , le ite ri nt er na tio na l pe rf or m an ce sc al e, it pa , r ey ne lls sp rå kt es t, m ov em en ta ss es sm en t ba tte ry fo rc hi ld re n si gn ifi ca nt im pr ov em en ti n al ld om ai ns fo rt he di et gr ou p co m pa re d to th e co nt ro lg ro up pa re nt no tb lin de d to di et sm al ls am pl e si ze n ot st an da rd iz ed as se ss m en to fa ut is tic tr ai ts n o ac co un tin g fo rp ot en tia lc on fo un de rs (m ed ic at io n, ot he rt he ra pi es ) fe w ba se lin e ch ar ac te ri st ic sf or pa tie nt s n o as se ss m en to fd ie ta ry fid el ity el de re ta l. [ ] r an do m iz ed ,d ou bl e bl in d, re pe at ed m ea su re s, cr os so ve r d ur at io n: w ee ks n = (m ;f ) a ge : – ye ar s g fc f m at ch ed di et bu tw ith gl ut en an d ca se in c a r s u ri na ry pe pt id e le ve ls , ec o la ng ua ge sa m pl in g su m m ar y, be ha vi or al ob se rv at io n by at ho m e vi de os (a tw ee k an d w ee k ) n o si gn ifi ca nt di ffe re nc es be tw ee n th e tw o gr ou ps sm al ls am pl e si ze h ig h he te ro ge ne ity in pa tie nt s sh or ts tu dy du ra tio n d ie ta ry fid el ity no ta lw ay sa de qu at e m is si ng da ta fo rs om e va ri ab le s n o ac co un tin g fo rp ot en tia lc on fo un de rs (m ed ic at io n, ot he rt he ra pi es ) w hi te le y et al . [ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, pa rt ly cr os so ve r( at m on th s, no tr es po nd er si n th e co nt ro lg ro up sw itc h to di et ) d ur at io n: m on th s n = (g en de rn ot re po rt ed ) a ge : – y ea rs g fc f (n = ) d ro p- ou ta t m on th sn = , on e pa tie nt re m ov ed ad di tio na lly fo rp ro to co l de vi at io n a na ly si sa t m on th sc ar ri ed ou to n ch ild re n (m ;f ) a na ly si sa t m on th sc ar ri ed ou to n ch ild re n n or m al di et (𝑛 = ) d ro p- ou ta t m on th s 𝑛 = , on e pa tie nt re m ov ed ad di tio na lly fo r pr ot oc ol de vi at io n a na ly si sa t m on th s ca rr ie d on ch ild re n (m ;f ) a na ly si sa t m on th s ca rr ie d ou to n ch ild re n a d o s- g ,v a bs ,a d h d -i v, an d g a r s (a tb as el in e an d – – – m on th s) si gn ifi ca nt im pr ov em en ti n th e di et gr ou p at an d m on th si n a d o s- co m m un ic at io n an d re pe tit iv e do m ai ns ,g a r s so ci al do m ai ns pa re nt no tb lin de d to di et sa m pl e si ze se em sa de qu at e bu tn ot po w er an al ys is pr ov id ed o nl y pe r- pr ot oc ol st at is tic al an al ys is h ig h at tr iti on ra te st ud y de si gn an d cr os so ve rn ot co m pl et el y cl ea r n o ac co un tin g fo rp ot en tia lc on fo un de rs (m ed ic at io n, ot he rt he ra pi es ) n o as se ss m en to fd ie ta ry fid el ity jo hn so n et al .[ ] r an do m iz ed ,p ar al le l gr ou ps d ur at io n: m on th s n = (m ;f ) a ge : – ye ar s d ia gn os is of a sd on ly in pa tie nt s, pd d -n o s in pa tie nt s g fc f 𝑛 = lo w su ga rh ea lth y di et 𝑛 = m ul le n sc al es of ea rl y le ar ni ng ,c b c ,d ir ec t ob se rv at io n of be ha vi or (a t ba se lin e an d aft er m on th s) n o si gn ifi ca nt cl in ic al di ffe re nc e be tw ee n th e tw o gr ou ps (i m pr ov em en ti n c b c ag gr es si on an d c b c a d h d in g fc f gr ou p) bl in di ng no tr ep or te d (p ar en tn ot bl in de d) sm al ls am pl e si ze lo w di et ar y ad he re nc e in g fc f gr ou p n o ac co un tin g fo rp ot en tia lc on fo un de rs (m ed ic at io n, ot he rt he ra pi es ) ev an ge lio u et al . [ ] pr os pe ct iv e, op en la be l d ur at io n: m on th s 𝑛 = (m ;f ) d ro p- ou t 𝑛 = a ge : – ye ar s k et og en ic di et ac co rd in g to jo hn r ad cl iff e ( % m ed iu m -c ha in tr ig ly ce ri de oi l, % fr es h cr ea m , % sa tu ra te d fa t, % ca rb oh yd ra te s, an d % pr ot ei ns )w as ad m in is te re d fo r m on th s, w ith in te rv al so f w ee ks in te rr up te d by tw o di et -f re e w ee ks n on e c a r s im pr ov em en t lo w di et ar y to le ra nc e an d su bs eq ue nt hi gh at tr iti on ra te sm al ls am pl e si ze o pe n la be lt ri al a ss es so rs no tb lin de d st at is tic al an al ys is no to pt im al a ll pa tie nt sw er e ta ki ng ha lo pe ri do l k ar ke lis et al .[ ] r an do m iz ed ,p la ce bo co nt ro lle d, pa ra lle l gr ou p d ur at io n: m on th s 𝑛 = (g en de rn ot re po rt ed ) a ge : – ye ar s ig e po si tiv e fo rm ilk al le rg y n = el em en ta lf or m ul a di et (c on ta in in g fr ee am in o ac id s) w ith no m ilk pr od uc t 𝑛 = (p os iti ve fo rm ilk al le rg y 𝑛 = ) n or m al di et 𝑛 = (p os iti ve fo rm ilk al le rg y 𝑛 = ) h yp er ac tiv ity si gn ifi ca nt im pr ov em en ti n hy pe ra ct iv ity in th e el em en ta ld ie tf or pa tie nt s w ith m ilk al le rg y an d a sd w ith ou tf oo d al le rg y bl in di ng no tr ep or te d ba se lin e da ta no tc om pl et e pr el im in ar y re po rt n ot st an da rd iz ed ou tc om e m ea su re sa m pl e si ze se em sa de qu at e bu tn o po w er an al ys is c ha n et al .[ ] r an do m iz ed ,d ou bl e bl in d, pa ra lle lg ro up d ur at io n: m on th 𝑛 = (m ;f ) a ge : – ye ar s c ha n di et 𝑛 = n or m al di et 𝑛 = a t ec ,f iv e- po in tt es t, to w er of c al ifo rn ia ,g o/ no go ta sk ,d te st of c on ce nt ra tio n, c c t t si gn ifi ca nt im pr ov em en ti n a t ec in th e ex pe ri m en ta l gr ou p bl in di ng no tr ep or te d (p ar en ts ap pe ar no t bl in de d, w hi ch co ul d al te ra t ec ) sm al ls am pl e si ze sh or ts tu dy du ra tio n st at is tic al an al ys is no to pt im al evidence-based complementary and alternative medicine ta bl e : c on tin ue d. a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs o ut co m e m ea su re fi nd in gs c om m en ts a l-a ya dh ia nd el am in [ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, pa ra lle l gr ou p d ur at io n: w ee ks 𝑛 = (g en de rn ot re po rt ed ) a ge : – ye ar s c am el m ilk ra w (𝑛 = )o r bo ile d (𝑛 = ) c ow m ilk as pl ac eb o 𝑛 = c a r s si gn ifi ca nt im pr ov em en ti n c a r s aft er in tr od uc tio n of ca m el m ilk sh or ts tu dy du ra tio n st at is tic al an al ys is no to pt im al fe w ba se lin e ch ar ac te ri st ic so fp at ie nt s n um be ro fp at ie nt sn ot ba la nc ed be tw ee n gr ou ps ba sh ir an d a l-a ya dh i[ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, pa ra lle l gr ou p d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s c am el m ilk ra w (n = )o r bo ile d (𝑛 = ) a dd iti on al ly pa tie nt sd ro pp ed ou t( in th e bo ile d gr ou p an d in th e ra w ) c ow m ilk as pl ac eb o n = a dd iti on al ly pa tie nt s dr op pe d ou t c a r s si gn ifi ca nt im pr ov em en ti n c a r s in th e ra w ca m el m ilk gr ou p sh or ts tu dy du ra tio n o nl y pe r- pr ot oc ol an al ys is h ig h dr op -o ut ra te a d h d -i v, a tte nt io n- d efi ci t h yp er ac tiv ity d is or de r- iv ra tin g sc al e; a d o s, a ut is m d ia gn os tic o bs er va tio n sc he du le ;a t ec ,a ut is m tr ea tm en t ev al ua tio n c he ck lis t; a sd ,a ut is m sp ec tr um di so rd er ;c a r s, c hi ld ho od a ut is m r at in g sc al e; c b c ,c hi ld b eh av io rc he ck lis t; c c t t, c hi ld re n’s c ol or tr ai ls te st ;e c o ,e co lo gi ca lc om m un ic at io n o ri en ta tio n; g a r s, g ill ia m a ut is m r at in g sc al e; g fc f, gl ut en -a nd ca se in - fr ee di et ;i t pa ,i lli no is te st of ps yc ho lin gu is tic a bi lit ie s; pd d -n o s, pe rv as iv e d ev el op m en ta ld is or de rn ot o th er w is e sp ec ifi ed ;v a bs ,v in el an d a da pt iv e b eh av io rs ca le . evidence-based complementary and alternative medicine although all these reports showed a significant improvement of asd symptoms after the elimination diet, there were sev- eral methodological flaws, such as the lack of a control group, poor diagnostic characterization, small sample sizes, use of unstandardized outcome measures, and absence of control on dietary adhesion. the first randomized controlled trial was done in [ ]: the authors enrolled pairs of autistic children matched for age, cognitive level, and severity. in each pair, one child was randomly assigned to a gluten- and casein- free (gfcf) diet while the other maintained the normal diet. the follow-up time was one year. it was a single blind study and the authors observed modification of attention, social and emotional factor, cognitive level, language, and motor skills in the elimination diet group. unfortunately, the study is flawed by several caveats such as the inclusion of patients with “abnormal urinary peptide patterns,” which could limit the generalizability of the findings, the single blind design, and the lack of dietary fidelity evaluation and of internationally valid outcome measures. later on, elder et al. [ ] conducted a randomized, double blind, repeated- measure, crossover trial evaluating the efficacy of gfcf diet in children with asd. patients were on diet for weeks. group data indicated no statistically significant findings. in , whiteley et al. [ ] enrolled children with asd who were randomly assigned to the gfcf diet or a control group. the overall attrition rate was high ( %): at the -month follow-up only children remained in the gfcf group and in the normal diet. at the same time-point, while patients in the gfcf continued their diet until the end of the study, children eating a normal diet were switched to the gfcf (however, only if their outcome measures at months exceeded a predefined, but unclear, threshold). at the -month follow-up only children did not drop out from the gfcf diet. the authors assessed asd symptoms at baseline and , , , and months, through the autism diagnostic observation schedule-generic (ados-g), the vineland adaptive behavior scale (vabs), and gilliam autism rating scale (gars). it is unclear on what patient groups or time-points the statistical analysis was carried out. the authors reported a significant improvement in social symptoms (measured only with gars) and communication and repetitive behavior (ados assessed). however, the observed differences did not seem clinically meaningful. in , johnson et al. [ ] piloted a three-month, prospective, randomized, parallel group trial. twenty-two children with asd were randomized to the gfcf diet or a healthy, low sugar diet. no statistically significant differences in core symptoms were reported between gfcf diet and control diet. the gfcf diet did not determine more side effects than the healthy diet. unfortunately, adherence to the gfcf diet proved to be difficult. among other less common dietary interventions for autism, the ketogenic diet should be mentioned. the keto- genic diet is low-carbohydrate, high-fat diet which has been successfully administered in children with refractory epilepsy: this dietary regimen determines a better seizure control and has an effect comparable to antiepileptic drugs [ ]. evangeliou et al. ( ) [ ] conducted a prospective follow-up trial evaluating the use of the ketogenic diet in children with asd. the diet was based on the john radcliffe diet, which consisted of the following regimen: % of energy derived from medium-chain triglyceride oil, % from fresh cream, % from saturated fat, % from carbohydrates, and % from protein. this dietary treatment appeared more easy to follow and manage than the proper ketogenic diet. the diet was administered for weeks, followed by weeks of normal nutritional regimen. this cycle was repeated for months. overall, twelve patients discontinued the diet. the subjects who completed the study reported at least a minor improvement in cars scores. however, this study suffers from an unblinded design, a high drop-out rate, and a poor diagnostic characterization of the participants. ige and non-ige-mediated food allergies are highly pre- valent among children. food allergy could determine the onset of different neuropsychiatric symptoms, such as hyper- activity, or worsen behaviors already present in young patients with asd [ ]. moving from this hypothesis, karke- lis et al. ( ) [ ] tested a new diet in which children were randomly assigned to an elemental formula (containing free amino acids-neocate) diet with exclusion of all milk products or to their previous normal diet. study participants were also subdivided according to the presence or absence of ige for cow milk. after months, the authors reported a significant reduction of hyperactivity. traditional chinese medicine (tcm) has been practiced in eastern countries for over years. it is based on a unique theoretical approach to diagnosis and treatment. it works on balancing opposing energies (yin and yang) and the life force (qi), which are present in everybody. according to the national center for complementary and alternative medicine, tcm comprehends several practices “including acupuncture, moxibustion (burning an herb above the skin to apply heat to acupuncture points), chinese herbal medicine, tui na (chinese therapeutic massage), dietary therapy, and tai chi and qi gong” [ ]. among tcm diets, the chanyi approach suggests to decrease the intake of some foods (like meat and fish, eggs, ginger, garlic, and onion) which are thought to produce higher internal heat and exert a negative impact on the child’s mood and cognitive functions. chan et al. [ ] conducted a double blind randomized study in which asd children were assigned either to a specific diet modification based on the chanyi approach or to their usual diet for one month. the authors observed a significant improvement in parent-rated social problems and repetitive behaviors. to date, the only functional food tested in autism is camel milk. camel milk contains less cholesterol and lactose than cow milk and more vitamins and enzymes such as the pep- tidoglycan recognition protein (pgrp), which plays a role in preventing food allergy and modulating the immune system [ ]. two placebo controlled double blind randomized trials [ , ] showed significant improvement in cars scores and in antioxidant activity in children treated either with raw or boiled camel milk for weeks compared to placebo. . . nutraceuticals. the term nutraceutical is defined as “any substance that is food or a part of food and provides medical evidence-based complementary and alternative medicine or health benefits, including the prevention and treatment of disease” [ ]. usually, nutraceuticals consist of dietary supplements (such as vitamins, minerals, amino acids, and herbal substances) or functional food. nutraceuticals could represent a potential treatment for autism with limited or no side effects, and they are commonly used in families with asd (table ) [ ]. . . . omega . among nutraceuticals, one of the most popular is omega supplementation. omega fatty acids are essential polyunsaturated fatty acids, derived mainly from fish and seafood (the eicosapentaenoic acid (epa) and the docosahexaenoic acid (dha)) or seeds and grains (the alpha-linolenic acid (ala)). the hypothesis behind the use of omega in autism is still not completely formulated: it is, however, well known that omega fatty acids are essential for brain development and function [ ]. a recent cochrane review [ ] has meta-analyzed the findings of two randomized trials (total sample size = ) [ , ], evaluating the effect of omega supplementation compared to placebo in children with asd. omega dosage varied from . g/day to . g/day. supplementation lasted for six weeks [ ] and weeks [ ], respectively. both studies used at least one common outcome measure, the aberrant behavioral checklist (abc). overall, there was no significant effect of omega supplementation on social interaction, communication, stereotypy, or hyperactivity. from this meta- analysis only two double blind placebo controlled trials were published. in one study [ ], the authors recruited children with asd who were assigned to . g/daily of omega or placebo for six weeks. parent-rated symptoms were evaluated through an internet questionnaire each week. study findings showed no significant difference between omega supple- mentation and placebo. recently, children with asd [ ] were randomized in a double blind fashion to receive dha ( mg/daily) or a placebo for months. outcome measures were the clinical global impressions-improvement scale, the child development inventory, the abc, and the behavior assessment scale for children. no significant difference was reported between the two groups. two nonrandomized studies [ , ] showed contrasting results: however, several methodological flaws were present in each study and also type and dosage of omega supplementation varied greatly between the trials. . . . vitamins. vitamin supplementation is another popular cam therapy in asd. the rationale for this treatment is based on the frequently observed dietary deficiency of vitamins and micronutrients in children with asd. in fact, it has been reported that children with asd introduce less than recommended amounts of calcium, vitamin d, vitamin k [ ], vitamin a, vitamin e [ ], zinc, vitamin b [ ], and tetrahydrobiopterin [ ]. these deficiencies could be the result of food selectivity or altered gastrointestinal absorption [ ]. several trials evaluating vitamins supplementation in asd have been conducted. a recent cochrane systematic review [ ] evaluated the efficacy of combined vitamin b - magnesium supplementation in asd. the use of vitamin b moved from early data ( ) showing language improve- ment in autistic children treated with this nutraceutical. the combination of vitamin b with magnesium was pos- tulated as magnesium could counteract several side effects connected with b supplementation (such as enuresis and irritability) [ ]. three randomized controlled studies were included [ – ], but data could not be meta-analyzed due to substantial heterogeneity between the trials. it is of note that all three trials reported no statistically significant difference between vitamin b supplementation and placebo. however, results could not be regarded as conclusive because several limitations in the study design should be taken into consideration such as small sample sizes and flawed data reporting. vitamin b was tested in two trials: the first from bertoglio et al. [ ] was a double blind, placebo controlled, randomized, crossover trial evaluating methyl b alone in children with asd. the authors did not observe any significant difference between active treatment and placebo. however, in a post hoc analysis they were able to identify a subgroup of patients ( %) which could be rated as clinically improved after the active treatment but not after the placebo. subsequently, frye et al. [ ] conducted an open label trial in which children were administered methyl b and folinic acid for three months. the authors reported a significant improvement in vineland total and subscales score. however, given the study design, no precise conclusion could be drawn from the findings; additionally the authors included only patients with abnormal redox metabolism which could in turn limit the generalizability of the results to the entire asd population. furthermore, methyl b is administered through injection, a procedure which could be uncomfortable for children and adults with asd: this fact could potentially explain the high drop-out rate (almost %). vitamin c supplementation alone is not so common in asd. however, dolske et al. [ ] observed a reduction in stereotyped behaviors in a -week, double blind, placebo controlled trial in children with asd. multivitamin supplements were tested in a double blind randomized trial [ ]. a common commercial vitamin sup- plement (containing several vitamins, minerals, no copper and iron, and antioxidants such as coenzyme q and n- acetyl cysteine) was chosen as active treatment. the authors recruited children with asd who were randomly assigned to active treatment or placebo. the dosage was adjusted according to the child’s weight and titrated to the full dose in three weeks. supplementation lasted for three months. the authors observed improvement in parent-rated scores of irritability. however, the study suffered from a poor characterization of participants, which could be on psy- chotropic medications and put on different elimination diets. additionally, the use of a multivitamin supplement prevented identifying single contributions of different vitamins and minerals. tetrahydrobiopterin (bh ), as other vitamins and micro- nutrients, is a natural substance that plays an essential role in several biochemical pathways. it has been tested as a therapeutic treatment in asd in three trials. the first from evidence-based complementary and alternative medicine ta bl e : n ut ra ce ut ic al si n a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts o m eg a a m m in ge re t al .[ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, pa ra lle l gr ou p d ur at io n: w ee ks 𝑛 = (m ) a ge : – ye ar s o m eg a 𝑛 = pl ac eb o 𝑛 = o ne dr op -o ut fr om th is gr ou p . g/ da y ep a an d . g/ da y d h a a b c n o si gn ifi ca nt di ffe re nc e be tw ee n th e tw o gr ou ps n o de ta ils ab ou tb lin di ng sm al ls am pl e si ze po w er an al ys is no tr ep or te d b en te ta l. [ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, pa ra lle l gr ou p d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s o m eg a 𝑛 = d ro p- ou t𝑛 = pl ac eb o 𝑛 = d ro p- ou t 𝑛 = . g/ da y ep a an d . g/ da y d h a a b c ,p pv t- ii i, ev t, sr s, ba sc ,c g i- im pr ov em en t n o st at is tic al ly si gn ifi ca nt di ffe re nc e o nl y pe r- pr ot oc ol an al ys is sm al ls am pl e si ze sh or ts tu dy du ra tio n b en te ta l. [ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, pa ra lle l gr ou p d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s o m eg a 𝑛 = pl ac eb o 𝑛 = . g/ da ily of om eg a ( . g/ da y of ep a pl us d h a ) a b c ,c g i, sr s n o st at is tic al ly si gn ifi ca nt di ffe re nc e sm al ls am pl e si ze sh or ts tu dy du ra tio n m eg ui d et al . [ ] o pe n la be l d ur at io n: m on th s 𝑛 = (m ;f ) a ge : – y ea rs o m eg a n on e m g/ da y d h a ; m g/ da y ep a ; m g/ da y o m eg a- fa tty ac id s c a r s im pr ov em en ti n ch ild re n st at is tic al an al ys is in co rr ec t (c on du ct ed on ly on ch ild re n w hi ch sh ow ed a re du ct io n in sy m pt om s) o pe n la be ld es ig n sm al ls am pl e si ze m ul tic om po ne nt in te rv en tio n (a ls o om eg a ) po lit ie ta l. [ ] o pe n la be l d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s o m eg a n on e . g/ da y ep a pl us d h a , m g/ da y vi ta m in e r os sa go be ha vi or al ch ec kl is t n o si gn ifi ca nt ch an ge fr om ba se lin e sm al ls am pl e si ze sh or ts tu dy du ra tio n o pe n la be ld es ig n n o st an da rd iz ed ou tc om e m ea su re vo ig te ta l. [ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, pa ra lle l gr ou p d ur at io n: m on th s 𝑛 = (m ;f ) a ge : – ye ar s o m eg a 𝑛 = pl ac eb o 𝑛 = m g/ da y d h a c g i- im pr ov em en ts ca le , c d i, a b c ,b a sc n o si gn ifi ca nt di ffe re nc e be tw ee n ac tiv e gr ou p an d pl ac eb o sm al ls am pl e si ze lo w do sa ge v ita m in s fi nd lin g et al . [ ] r an do m iz ed ,d ou bl e bl in d pl ac eb o co nt ro lle d, cr os so ve r d ur at io n: w ee ks 𝑛 = (m ;f ) d ro p- ou t𝑛 = a ge : – . ye ar s v ita m in b -m ag ne si um pl ac eb o b : m g/ kg /d ay (m ax = g /d ay ); m g: m g/ kg /d ay (m ax = m g/ da y) c a r s, c g i, c pr s, o c s n o di ffe re nc e be tw ee n th e tw o gr ou ps sm al ls am pl e si ze sh or ts tu dy du ra tio n m ul tic om po ne nt in te rv en tio n pe rp ro to co la na ly si s k ur iy am a et al . [ ] r an do m iz ed do ub le bl in de d pl ac eb o co nt ro lle d pa ra lle l gr ou p d ur at io n: w ee ks 𝑛 = en te re d th e st ud y on ly 𝑛 = (m ; f ) d ro p- ou t𝑛 = a ge : – . ye ar s v ita m in b 𝑛 = pl ac eb o 𝑛 = b : m g/ da y iq (w is c -i ii )a nd sq (s m ) n o di ffe re nc e be tw ee n ac tiv e gr ou p an d pl ac eb o sm al ls am pl e si ze h ig h at tr iti on ra te u nc le ar ch ar ac te ri za tio n of pa tie nt s “c hi ld re n w ith pd d sw ho ex hi bi t cl in ic al fe at ur es si m ila rt o th os e of py ri do xi ne de pe nd en te pi le ps y bu t do no th av e a hi st or y of se iz ur es ” c lin ic al ch ar ac te ri za tio n un cl ea r (o nl y pd d ) to lb er te ta l. [ ] r an do m iz ed do ub le bl in d pl ac eb o co nt ro lle d, as ym m et ri c cr os so ve rw ith w ee k tr ea tm en tb lo ck s (b / m g w -p la ce bo w ; or b /m g w -p la ce bo w -b / m g w ) d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s v ita m in b -m ag ne si um pl ac eb o b : m g/ kg ;m g: m g/ kg r lr s n o di ffe re nc e n o in fo rm at io n on pl ac eb o pr es en ce of a co nt ro lg ro up ,b ut no t ra nd om iz ed sm al ls am pl e si ze lo w do sa ge of b /m g a sy m m et ri c st ud y de si gn b er to gl io et al . [ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, cr os so ve r d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s m et hy lb pl ac eb o . m cg /k g ev er y th re e da ys c g i- i, pi a -c v, c a r s, pp v t- ii i, a b c ,c b c , st an fo rd bi ne tf ift h ed iti on r ou tin g su bs et s, m c d i n o si gn ifi ca nt di ffe re nc e be tw ee n ac tiv e tr ea tm en ta nd pl ac eb o sm al ls am pl e si ze sh or ts tu dy du ra tio n im pr ov em en to nl y in po st ho c an al ys is evidence-based complementary and alternative medicine ta bl e : c on tin ue d. a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts fr ye et al .[ ] o pe n la be lt ri al d ur at io n: m on th s 𝑛 = (g en de rn ot ex pl ic itl y re po rt ed ) d ro p- ou t𝑛 = a ge : – ye ar s m et hy lb vi ta m in pl us fo lin ic ac id n on e 𝜇 g/ k g m et hy lc ob al am in ev er y th re e fo lin ic ac id ( 𝜇 g) tw ic e da ily v in el an d im pr ov em en ti n al l v in el an d su bs ca le s o nl y pa tie nt sw ith ab no rm al re do x m et ab ol is m w er e in cl ud ed h ig h at tr iti on ra te st at is tic al an al ys is on ly pe rf or m ed on co m pl et er s sm al ls am pl e si ze d ol sk e et al . [ ] r an do m iz ed do ub le bl in de d pl ac eb o co nt ro lle d, cr os so ve r w ith as ym m et ri c de si gn w ith w bl oc k (r an do m ly as si gn ed to vi tc -v itc -p la ce bo or vi tc -p la ce bo -v itc ) d ur at io n: w ee ks 𝑛 = a ge : – ye ar s v ita m in c pl ac eb o g/ kg /d ay r lr s si gn ifi ca nt im pr ov em en ti n vi tc tr ea te d sm al ls am pl e si ze sh or ts tu dy du ra tio n a da m se ta l. [ ] r an do m iz ed do ub le bl in de d pl ac eb o co nt ro lle d tr ia l d ur at io n: m on th s 𝑛 = (m ; f ) a ge : – ye ar s m ul tiv ita m in ic su pp le m en t𝑛 = d ro p- ou t𝑛 = pl ac eb o 𝑛 = d ro p- ou t 𝑛 = ea ch su pp le m en tw as tit ra te d to be ov er th e re co m m en de d da ily al lo w an ce bu tu nd er th e to le ra bl e up pe rl im it pd d -b i, a t ec ,s a s, pa re nt -r at ed be ha vi or s im pr ov em en to f pa re nt -r at ed ir ri ta bi lit y in th e ac tiv e gr ou p n o po w er ca lc ul at io n h ig h at tr iti on ra te o nl y pe r- pr ot oc ol an al ys is d an fo rs et al . [ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, cr os so ve r d ur at io n: m on th s 𝑛 = (m ) a ge : – ye ar s te tr ah yd ro bi op te ri n (b h ) pl ac eb o m g/ kg /d ay c a r s (b as el in e, an d m on th ) sm al lc ha ng es in c a r s to ta ls co re sm al ls am pl e si ze o nl y po st -h oc an al ys is re ve al s si gn ifi ca nt ch an ge si n c a r s su bd om ai n fr ye et al .[ ] o pe n la be l d ur at io n: w ee ks 𝑛 = (m ; f ) a ge : – ye ar s c hi ld re n m us th av e lo w ce re br os pi na l flu id le ve lo fb h te tr ah yd ro bi op te ri n (b h ) d ro p- ou t𝑛 = n on e m g/ kg /d ay pl s, sr s, c a r s, a sq , v in el an d si gn ifi ca nt im pr ov em en ti n pl s, c a r s, a sq ,a nd v in el an d o pe n la be l sm al ls am pl e si ze h ig h at tr iti on ra te ( % ) h ig h te tr ah yd ro bi op te ri n do se (u su al ly – m g/ kg /d ay ) k la im an et al . [ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, pa ra lle l gr ou p d ur at io n: w ee ks 𝑛 = a ge : – ye ar s te tr ah yd ro bi op te ri n (b h ) pl ac eb o m g/ kg /d ay c g i, pl s, a b c ,s r s, v in el an d n o si gn ifi ca nt di ffe re nc e be tw ee n th e tw o gr ou ps im pr ov em en to nl y in po st ho c an al ys is on se co nd ar y m ea su re s h ig h te tr ah yd ro bi op te ri n do se (u su al ly – m g/ kg /d ay ) l- ca rn os in e c he z et al .[ ] r an do m iz ed do ub le bl in de d pl ac eb o co nt ro lle d d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s l- c ar no si ne 𝑛 = pl ac eb o 𝑛 = m g/ da y c a r s, g a r s, c g i ex pr es si ve an d r ec ep tiv e o ne -w or d pi ct ur e vo ca bu la ry te st s, si gn ifi ca nt im pr ov em en ti n th e ac tiv e gr ou p in g a r s an d in th e r ec ep tiv e o ne -w or d pi ct ur e vo ca bu la ry te st sm al ls am pl e si ze n o po w er ca lc ul at io n h al fo ft he su bj ec ts w er e on st ab le do sa ge of va lp ro ic ac id fl av on oi ds ta lio u et al .[ ] o pe n la be l d ur at io n: w ee ks 𝑛 = (m ;f ) d ro p- ou t𝑛 = a ge : – ye ar s fl av on oi d c ap su le / k g/ da y n on e lu te ol in ( m g/ ca ps ul e) , qu er ce tin ( m g/ ca ps ul e) , an d th e ru tin ( m g/ ca ps ul e) v in el an d, a b c ,a t ec , c g i- im pr ov em en t im pr ov em en ti n v in el an d an d a b c sc or es o pe n la be ld es ig n sm al ls am pl e si ze h ig h at tr iti on ra te pr ob io tic s k ał uz na - c za pl iń sk a an d bł as zc zy k [ ] o pe n la be l d ur at io n: m on th s 𝑛 = (m ;f ) a ge : – ye ar s pr ob io tic c ap su le tw ic e da ily n on e la ct ob ac ill us ac id op hi lu s (s tr ai n r os el l- ,c on ta in in g × c fu /g ) o bs er ve rr at ed au tis m co re sy m pt om s im pr ov em en t o pe n la be ld es ig n a ll ch ild re n ha ve ga st ro in te st in al pr ob le m s o th er c a m tr ea tm en ts w er e us ed co nc om ita nt ly sm al ls am pl e si ze n o st an da rd iz ed ou tc om e m ea su re en zy m e su pp le m en ta tio n m un as in gh e et al .[ ] r an do m iz ed do ub le bl in de d pl ac eb o co nt ro lle d cr os so ve r d ur at io n: m on th s 𝑛 = (m ;f ) d ro p- ou t𝑛 = a ge : – ye ar s d ig es tiv e en zy m e su pp le m en t pl ac eb o pe pt iz yd e (p ep tid as e, pr ot ea se . an d pa pa in ) tw o ca ps ul es w ith ea ch m ea l g br s, a r s of ga st ro in te st in al sy m pt om s, an d th e r es co rl a ld s n o di ffe re nc e h ig h dr op -o ut ra te n ot cl ea ri fi nt en tio n- to -t re at or pe r- pr ot oc ol an al ys is n ot al lo ut co m e m ea su re sw er e st an da rd iz ed evidence-based complementary and alternative medicine ta bl e : c on tin ue d. a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts h er ba lr em ed ie s h as an za de h et al .[ ] r an do m iz ed do ub le bl in de d pl ac eb o co nt ro lle d pa ra lle lg ro up d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s a ll ch ild re n w er e on ri sp er id on e - m g/ da y ac co rd in g to w ei gh t g in kg o bi lo ba 𝑛 = (m ;f ) pl ac eb o 𝑛 = (m ;f ) m g/ da y if w ei gh t< kg ; ot he rw is e m g/ da y a b c n o di ffe re nc e sm al ls am pl e si ze sh or ts tu dy du ra tio n o nl y on e ou tc om e m ea su re m iy ao ka et al . [ ] o pe n la be l d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s yo ku sa n n on e . – . g/ da y c g i- se ve ri ty ,a b c im pr ov em en ti n c g i an d th e ir ri ta bi lit y su bs ca le of a b c o pe n la be ld es ig n sm al ls am pl e si ze c ha n et al .[ ] o pe n la be l d ur at io n: m on th s 𝑛 = (m ;f ) a ge : – ye ar s b or ne la nd b or ax na sa ld ro ps 𝑛 = n on e 𝑛 = m l/ da y br ie f, to w er of c al ifo rn ia , c c t t, c pr s, ev en t- re la te d ee g as se ss m en t im pr ov em en t n ot pl ac eb o co nt ro lle d o pe n la be ld es ig n sm al ls am pl e si ze st at is tic al an al ys is no to pt im al a b c ,a be rr an t b eh av io r c he ck lis t; a r s, a dd iti on al r at in g sc al e; a t ec ,a ut is m tr ea tm en t ev al ua tio n c he ck lis t; a sd ,a ut is m sp ec tr um di so rd er ;a sq ,a ut is m sy m pt om s q ue st io nn ai re ;b a sc ,b eh av io ra l a ss es sm en ts ys te m fo r c hi ld re n; br ie f, b eh av io r r at in g in ve nt or y of ex ec ut iv e fu nc tio n; c a r s, c hi ld ho od a ut is m r at in g sc al e; c c t t, c hi ld re n’s c ol or tr ai ls te st ;c d i, c hi ld d ev el op m en ti nv en to ry ;c g i- i, c lin ic al g lo ba li m pr es si on sc al e of im pr ov em en t; c pr s, c hi ld re n’s ps yc hi at ri c r at in g sc al e; d h a ,d oc os ah ex ae no ic ac id ;e pa ,e ic os ap en ta en oi c ac id ;e v t, ex pr es si ve vo ca bu la ry te st ;g a r s, g ill ia m a ut is m r at in g sc al e; g br s, g lo ba lb eh av io ur r at in g sc al e; iq ,i nt el lig en ce q uo tie nt ;l d s, la ng ua ge d ev el op m en ts ur ve y; o c s, o bs es si ve c om pu ls iv es ca le ;p d d -b i, pe rv as iv ed ev el op m en td is or de rb eh av io ri nv en to ry ; pl s, pr es ch oo ll an gu ag e sc al e; pp v t- ii i, pe ab od y pi ct ur e vo ca bu la ry te st -th ir d ed iti on ;r lr s, r itv o- fr ee m an r ea ll ife r at in g sc al e fo r a ut is m ;s a s, se ve ri ty of a ut is m sc al e sm ;s oc ia lm at ur ity ;s q ,s oc ia l q uo tie nt ;s r s, so ci al r es po ns iv en es ss ca le ;v a bs ,v in el an d a da pt iv e b eh av io rs ca le ;w is c -i ii ,w ec hs le ri nt el lig en ce sc al es fo rc hi ld re n- ii i. evidence-based complementary and alternative medicine danfors et al. [ ] was a randomized, double blind, placebo controlled, crossover study. children with asd were ran- domized to either bh or placebo for three months and then switched for other three months. no significant change was detected; only post hoc analysis revealed minor changes in secondary outcome measures. on the other hand, more recently, an open label trial [ ] was aimed at testing bh in children with asd and low cerebrospinal fluid level of bh . the authors observed significant changes in several outcome measures on language production, social communication, activity of daily living, and irritability. however, the sample was very small and bh dosage was very high compared to previous reports [ ]: it is of note that only % of subjects reported adverse events such as insomnia, irritability, and mild stomach discomfort. another recent double blind, randomized, placebo controlled study [ ], using a protocol similar to a previous study [ ], did not report improve- ment in the primary outcome measure (clinical global impression-improvement and severity): however, post hoc analysis on secondary outcome measures showed improve- ment in the bh group in social awareness and reduction of hyperactivity, mannerisms, and inappropriate speech. . . . l-carnosine. l-carnosine is another cam therapy tested in autism. the rationale for the use of this nutraceutical relies on the connection between carnosine and gaba func- tioning, which seems to be altered in asd [ ]. in particular carnosine could alter neurotransmission by interacting with zinc and copper at gaba receptor level [ ]. in the only double blind, placebo controlled, randomized study [ ] conducted so far, mg of l-carnosine were administered twice daily to children with asd, while children received the placebo. the follow-up lasted for weeks. the authors found that supplementation with carnosine improved recep- tive speech and social behavior, with no side effect (apart from rare hyperactivity which disappeared after lowering the dose). it is of note that change in clinical global impression rating did not reach significance, thus reducing the validity of the results. . . . flavonoids. the presence of altered redox status and concomitant subclinical inflammation has been reported in asd [ ]. natural flavonoids, in particular quercetin and luteolin, exert a powerful antioxidant activity and have a low redox potential which could in turn be useful in autism [ ]. unfortunately, only one open label prospective trial [ ] has evaluated a formula containing luteolin ( mg/capsule, from chamomile), quercetin ( mg/capsule), and the quercetin glycoside rutin ( mg/capsule) in children with asd. only subjects completed the -week follow-up. significant changes in adaptive functioning and aberrant behaviors were observed. the most relevant adverse event was irritability, which was experienced by half of the sample usually at the beginning of therapy ( – weeks). . . . probiotics. according to the world health organiza- tion, probiotics are live microorganisms which could exert health benefits on the host. generally, probiotics are bacteria which belong to two groups, lactobacillus or bifidobacterium spp. in recent years, the gut-brain connection in autism has obtained much relevance: in fact, it is well known that gastrointestinal tract and brain can influence each other. particularly, gut inflammation or altered microflora could determine a detrimental effect on brain development and function [ ]. moving from these premises, in , chil- dren with asd were recruited in an open label trial [ ]. they received two capsules daily of lactobacillus acidophilus for two months. the authors observed significant modification in urinary excretion of arabinol and, concomitantly, significant improvement in core symptoms of autism, such as eye contact and correct recognition of human emotion. . . . digestive enzymes. moving from the hypothesis of gut abnormalities in autism, a double blind, placebo controlled, randomized, crossover trial has evaluated supplementation with digestive enzymes in autism [ ]. the supplement was composed of three plant-derived enzymes (peptidase, pro- tease . , and papain) and was administered for three months; the active phase was preceded/followed by a placebo phase of the same duration. of the children enrolled, did not complete the trial. overall, there was no significant clinical change in autistic symptoms between enzyme treatment and placebo. it is of note that the authors observed that patients on the active treatment displayed higher food variety. . . . herbal remedies. among herbal remedies, a recent study from chan et al. [ ] investigated the potential use- fulness of intranasally administered borneol and borax (two herbs which in chinese traditional medicine were thought to enhance cognitive abilities) in children with asd. they recruited additionally children with asd which acted as a control group. this pilot study lasted for six months. the authors reported that subjects in the experimental group showed more flexibility in problem solving, greater attention, and planning capacities. yokukansan, a traditional japanese herbal remedy used for restlessness and behavioral symptoms of dementia, was tested in a -week, open label trial [ ] in which the herb was administered to subjects with asperger syndrome or pdd-nos. the dose was gradually titrated from . g/day to a maximum of . g/day. % of the sample showed a clinically significant response, and no serious adverse event was reported (only mild nausea in five patients). ginkgo biloba, which could exert a useful anti-inflammatory activity and potentially enhance cognitive function [ ], was evaluated in a study involving children with autism [ ]. patients were randomly assigned to either ginkgo biloba or placebo in adjunction to risperidone. the primary outcome was the abc scale. there was no statisti- cally significant difference between the two groups according to the aforementioned subscale. thus ginkgo biloba did not seem to be an efficacious adjunctive therapy to risperidone. however, it appeared to be safe and well tolerated even in childhood. evidence-based complementary and alternative medicine . . hyperbaric oxygen therapy. hyperbaric oxygen ther- apy (hbot) is generally used to treat carbon monoxide poisoning or air embolism. the exact mechanism of action is not yet fully understood but hbot seems to exert positive effects on different neurological symptoms [ , ]. hbot has been tested in four different trials with inconsistent results (table ). particularly, two well-designed, randomized trials yielded opposite findings: rossignol et al. [ ] showed sig- nificant improvement while granpeesheh et al. [ ] observed no difference between the active and control conditions. both studies were well conducted with good characterization of the participants and intention-to-treat analysis. however, the study from rossignol et al. suffered from the absence of a placebo condition because it compared two different hbot procedures. recently, in , another randomized trial [ ] (which has a lower quality) has reported no significant difference between hbot and a sham condition (with high pressure, but no supplemental oxygen). it is of note that both groups seemed to improve from baseline. a small open label trial reported improvement in several symptoms of asd [ ]. . . chelation. chelation treatment involves administration to an individual of various chemical substances for the purpose of binding and then withdrawing specific metals from the person’s body [ ]. chelation in asd has been investigated in a few studies collected in a review published in [ ]. the review included studies for a total of participants. however, for the purpose of the present review, only the study from adams et al. [ ] and from d. a. geier and m. r. geier [ ] could be included (the others were case report or case series) (table ). adams et al. [ ] conducted a double blind, randomized trial which did not demonstrate any significant evidence supporting the utility of chelation treatment in asd. d. a. geier and m. r. geier [ ] designed an open label trial in which children underwent chelation and antiandrogen therapy. the authors reported significant improvement, but the study design and the multicomponent intervention refrained to draw solid conclusions. . nonbiologically based cam treatments the national center for complementary and alternative medicine (nccam) divides nonbiological cam therapies in three groups: mind-body medicine (i.e., prayer, yoga, meditation, music, dance, and art in general), manipulative and body-based practices (i.e., massage, chiropractic care, and acupuncture), and energy medicine (i.e., reiki or home- opathy) [ ]. . . music therapies. music therapy can be defined as “a systematic process of intervention wherein the therapist helps the client to promote health, sing musical experiences and the relationships that develop through them as dynamic forces of change” [ ]. the role of music therapy as a treatment for several psychiatric conditions (i.e., depression, schizophrenia, substance dependence and abuse disorder, and dementia) has been studied for many years, because of its effectiveness in the domains of physical recovery, cognitive improvement, communication skills, and social and emotional rehabilitation [ ]. musical improvisation in autism could represent a sort of nonverbal shared language that could enable both verbal and nonverbal patients to reach communication [ ]. in fact, it has been reported that the learning of language in infants is highly based on the musicality of sounds [ ]. additionally, children with asd appeared to respond better to music than to spoken words [ ]. as a hypothesis, because different brain regions processed music or words [ ], the use of song could help people with asd to understand emotion which they have difficulties in detecting in words. the use of music therapy in the treatment of asd patients has been tested in several studies (table ). in [ ], the cochrane collaboration reviewed randomized controlled trials (rct) which have been published from to [ – ]. considering all studies, total sample size was . the findings provided evidence that music therapy may help children with asd to improve their skills in primary outcome areas like social interaction, verbal communication, initiating behavior, and social-emotional reciprocity. it may also help to enhance nonverbal communication skills within the therapy context. furthermore, it may contribute to increasing social adaptation skills in children with asd and to promoting the quality of parent-child relationships. however, several included studies suffered from a very small sample size and from difficulties in defining a standard in music therapy methodology in order to facilitate replicability. from this review, no other rct have been published. we retrieved also two open label trials. firstly, boso and colleagues experimented music therapy in adults with asd. the study showed significant improvement in several standardized scales (cgi-s, cgi-i, and bprs) [ ]. another recently published study included patients. iseri and colleagues did not find any change in hormonal levels but improvements in patients’ behavior, social, and communication skills [ ]. other types of music-related therapies have been inves- tigated in asd, which involved music as an active part of the intervention. kalas [ ] tried to elicit responses to joint attention in autistic children with asd by making them listen to two different types of music (simple and complex). the cohort was divided into two groups of severity and the study demonstrated that while simple music was more effective in severe asd patients’ joint attention, complex music was more effective in children with mild or moderate autism. the main flaw of this study was the lack of a standardized outcome measure. vibroacoustic music has been investigated in individuals with mental retardation and also in a small sample of patients affected by autism [ ]. the randomized study was focused on self-injuring, aggressive and stereotypical behavior and demonstrated that vibroacoustic music may be useful in reducing these aspects. we have to underline that the study is not specific for asd and that the experimenters did not account for possible confounders. schwartzberg and silverman [ ] evaluated the social skills profile in children with autism in a three- week study. children were divided into two groups: in one group the children were sung social stories, while in the other group the stories were simply read. unfortunately, no evidence-based complementary and alternative medicine ta bl e : h yp er ba ri c o xy ge n th er ap y in a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts g ra np ee sh eh et al .[ ] r an do m iz ed ,d ou bl e bl in d, pl ac eb o co nt ro lle d, pa ra lle l gr ou p d ur at io n: m ax im um w ee ks 𝑛 = (g en de rn ot re po rt ed ) a ge : – ye ar s d ro p- ou t𝑛 = pa tie nt sc on tr ol le d fo r m ed ic at io n an d ed uc at io na l th er ap y h b o t ( . at m an d su pp le m en ta lo xy ge n ap pr ox im at el y – % fi o ) c om pl et er s( 𝑛 = ) pl ac eb o c om pl et er s (𝑛 = ) - h se ss io ns a b c ,a d o s, c g i, v in el an d, sr s, br ie f, ps i, pp v t- ii i, v m i n o si gn ifi ca nt di ffe re nc e h ig h at tr iti on ra te r os si gn ol et al . [ ] o pe n la be l d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s h b o t ( . at m an d su pp le m en ta lo xy ge n ( % fi o ) ,𝑛 = h b o t ( . at m an d su pp le m en ta lo xy ge n ( % fi o ) ,𝑛 = d ro p- ou t𝑛 = n on e - h se ss io ns a t ec , a b c -c om m un ity ,s r s si gn ifi ca nt im pr ov em en ti n bo th gr ou ps in a t ec an d sr s o pe n la be l sm al ls am pl e si ze r os si gn ol et al . [ ] r an do m iz ed ,d ou bl e bl in d, pa ra lle lg ro up d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s h b o t ( . at m an d su pp le m en ta lo xy ge n (a pp ro xi m at el y % fi o ) , “a ct iv e gr ou p,” 𝑛 = d ro p- ou t𝑛 = h b o t ( . at m an d su pp le m en ta lo xy ge n (a pp ro xi m at el y % fi o ) ,“ co nt ro l gr ou p,” 𝑛 = d ro p- ou t𝑛 = - h se ss io ns a t ec ,c g i, a b c si gn ifi ca nt im pr ov em en ti n th e ac tiv e gr ou p in c g ir ec ep tiv e la ng ua ge ,s oc ia l in te ra ct io n, an d ey e co nt ac t. im pr ov em en ti n a t ec se ns or y/ co gn iti ve aw ar en es s n o pl ac eb o sa m pa nt ha vi va t et al .[ ] r an do m iz ed ,d ou bl e bl in d, pa ra lle lg ro up d ur at io n: un cl ea r 𝑛 = a ge : – ye ar s h b o t ( . at m an d su pp le m en ta lo xy ge n % fi o ) ,𝑛 = d ro p- ou t𝑛 = sh am ai r( . at m ), 𝑛 = d ro p- ou t𝑛 = - h se ss io ns a t ec ,c g i- ch an ge ,a nd c g i- se ve ri ty n o di ffe re nc es be tw ee n th e tw o gr ou ps n o pl ac eb o a b c ,a be rr an tb eh av io rc he ck lis t; a d o s, a ut is m d ia gn os tic o bs er va tio n sc he du le ;a t ec ,a ut is m tr ea tm en te va lu at io n c he ck lis t; a sd ,a ut is m sp ec tr um di so rd er ;b r ie f, b eh av io rr at in g in ve nt or y of ex ec ut iv e fu nc tio ni ng ;c g i, c lin ic al g lo ba li m pr es si on ;p pv t- ii i, pe ab od y pi ct ur e vo ca bu la ry te st -th ir d ed iti on ;p si ,p ar en ts tr es si nd ex ;s r s, so ci al r es po ns iv en es ss ca le ;v a bs ,v in el an d a da pt iv e b eh av io rs ca le ;v m i- , b ee ry -b uk te ni ca d ev el op m en ta lt es to fv is ua l- m ot or in te gr at io n— t h ed iti on . evidence-based complementary and alternative medicine ta bl e : c he la tio n in a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts a da m se ta l. [ ] r an do m iz ed , do ub le bl in d, pl ac eb o co nt ro lle d, pa ra lle lg ro up d ur at io n: da ys 𝑛 = (m ;f ) a ge : – ye ar s ea ch su bj ec tw as su bj ec te d to on e ro un d of d m sa to el im in at e lo w m et al ex cr et or d im er ca pt os uc ci ni c ac id (d m sa )t he ra py , c om pl et er s𝑛 = pl ac eb o, c om pl et er s 𝑛 = si c ro un d of d m sa in th re e da ys a t ec ,p d d -b i, sa s, a d o s, pg i n o si gn ifi ca nt di ffe re nc es be tw ee n ac tiv e tr ea tm en ta nd co nt ro l ve ry hi gh at tr iti on ra te n o po w er ca lc ul at io n n ot re al pl ac eb o (e ac h su bj ec ts in th e pl ac eb o gr ou p re ce iv ed a ro un d of d m sa ) m ul tic om po ne nt in te rv en tio n (p at ie nt sr ec ei ve d be fo re en ro llm en tg lu ta th io ne ) d .a .g ei er an d m .r . g ei er [ ] o pe n la be l d ur at io n: m in im um – m ax im um m on th s 𝑛 = (m ;f ) a ge : – ye ar s ( )m es o- , - di m er ca pt os uc ci ni c ac id ( )l eu pr ol id e ac et at e n on e ( ) m g/ kg tw ic e da ily ( ) m g ev er y da ys a t ec si gn ifi ca nt im pr ov em en t o pe n la be l sm al ls am pl e si ze m ul tic om po ne nt in te rv en tio n po te nt ia lc on fli ct of in te re st a d o s, a ut is m d ia gn os tic o bs er va tio n sc he du le ;a t ec ,a ut is m tr ea tm en te va lu at io n c he ck lis t; a sd ,a ut is m sp ec tr um di so rd er ;p d d -b i, pe rv as iv e d ev el op m en ta ld is or de r- b eh av io r in ve nt or y; pg i, pa re nt g lo ba li m pr es si on s; sa s, se ve ri ty of a ut is m sc al e. evidence-based complementary and alternative medicine ta bl e : m us ic th er ap ie si n a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts a re zi na [ ] r an do m iz ed , cr os so ve r d ur at io n: w ee ks 𝑛 = (m ; f ) a ge : – m on th s in te ra ct iv e m t (m us ic al in st ru m en t pl ay ,s on gs ,m us ic , bo ok s) ( )n on m us ic in te ra ct iv e pl ay (n on m us ic to ys an d bo ok s) ( )i nd ep en de nt pl ay se ss io ns of m in ut es ea ch b eh av io ro bs er va tio n of vi de ot ap ed se ss io ns si gn ifi ca nt m or e in te ra ct io ns du ri ng in te ra ct iv e m us ic th er ap y th an th e tw o co m pa ra to rg ro up s. si gn ifi ca nt m or e re qu es tin g du ri ng in te ra ct iv e th an in de pe nd en tp la y, bu tn o eff ec to fm us ic bl in di ng no tr ep or te d n o de ta ils ab ou td ia gn os tic pr oc es s n o ba se lin e as se ss m en to ff un ct io ni ng sm al ls am pl e si ze n o st an da rd iz ed ou tc om e m ea su re s n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) br ow ne ll [ ] r an do m iz ed , cr os so ve r d ur at io n: w ee ks 𝑛 = (m ; f ) a ge : – ye ar s st ru ct ur ed re ce pt iv e m t (s on gs w ith so ci al st or ie s) ( )s tr uc tu re d re ce pt iv e “s to ry th er ap y” (r ea di ng of so ci al st or ie s) ( )n o in te rv en tio n, ( da ys ) in di vi du al da ily se ss io ns r ep et iti ve be ha vi or s ou ts id e th er ap y se ss io ns (i n cl as sr oo m ) n o di ffe re nc e bl in di ng no tr ep or te d n o de ta ils ab ou td ia gn os tic pr oc es s sm al ls am pl e si ze n o st an da rd iz ed ou tc om e m ea su re s n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) bu da y [ ] r an do m iz ed ,s in gl e bl in d, cr os so ve r d ur at io n: w ee ks 𝑛 = (m ; f ) a ge : – ye ar s st ru ct ur ed re ce pt iv e m t (s on gs us ed to te ac h si gn s) “r hy th m th er ap y” (r hy th m ic sp ee ch us ed to te ac h si gn s) in di vi du al se ss io ns im ita tin g be ha vi or in se ss io ns (s ig n an d sp ee ch im ita tio n) si gn ifi ca nt im pr ov em en to f im ita tio n in th e m us ic ve rs us rh yt hm ic co nd iti on s sm al ls am pl e si ze n o de ta ils ab ou td ia gn os tic pr oc es s n o st an da rd iz ed ou tc om e m ea su re s n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) fa rm er [ ] r an do m iz ed , pa ra lle lg ro up d ur at io n: da ys 𝑛 = (m ; f ) a ge : – ye ar s m us ic th er ap y se ss io ns (c om bi ne d ac tiv e an d re ce pt iv e: gu ita r pl ay in g, so ng s) ,𝑛 = pl ac eb o (n o m us ic )s es si on s, 𝑛 = in di vi du al se ss io ns of m in ut es r es po ns es w ith in se ss io ns : (a )v er ba lr es po ns es , (b )g es tu ra lr es po ns es si gn ifi ca nt in cr ea se in ve rb al re sp on se si n th e m us ic gr ou p ve rs us pl ac eb o. n o si gn ifi ca nt di ffe re nc e in ge st ur al re sp on se s bl in di ng no tr ep or te d n o de ta ils ab ou td ia gn os tic pr oc es s sm al ls am pl e si ze n o st an da rd iz ed ou tc om e m ea su re s n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) n um be ro fs ub je ct sp er se ss io n va ri es g at tin o et al .[ ] r an do m iz ed , si ng le bl in d, pa ra lle lg ro up d ur at io n: m on th s 𝑛 = (m ;f ) a ge : – ye ar s r el at io na lm us ic th er ap y (i m pr ov is at io n no tu si ng a st ru ct ur ed pr ot oc ol )p lu s st an da rd ca re ,𝑛 = st an da rd tr ea tm en t( cl in ic al ro ut in e ac tiv iti es ), 𝑛 = th ir ty -m in ut e se ss io ns , sc he du le d w ee kl y c a r s, br az ili an ve rs io n n o st at is tic al di ffe re nc e be tw ee n th e tw o gr ou ps . su bg ro up an al ys is on no nv er ba lc om m un ic at io n sh ow ed im pr ov em en ti n th e m us ic gr ou p si ng le bl in d sm al ls am pl e si ze n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) k im et al .[ ] r an do m iz ed ,s in gl e bl in d, cr os so ve r d ur at io n: m on th s 𝑛 = (m ;f ) ; dr op -o ut 𝑛 = (m ; f ) a ge : – m on th s d ia gn os is of a sd by tw o ch ild ps yc hi at ri st s im pr ov is at io na lm us ic th er ap y pl ay se ss io ns w ith to ys th ir ty -m in ut e se ss io ns , sc he du le d w ee kl y pd d -b i, es c s, ey e co nt ac tf re qu en cy an d du ra tio n, in iti at io n of en ga ge m en tf re qu en cy , em ot io na ls yn ch ro ni ci ty fr eq ue nc y an d du ra tio n, m us ic al sy nc hr on ic ity fr eq ue nc y an d du ra tio n, nu m be ro fc om pl ia nt -n o co m pl ia nt an d ab se nt re sp on se s, jo y fr eq ue nc y an d du ra tio n si gn ifi ca nt im pr ov em en to nl y in es c s sc or e aft er m us ic th er ap y co m pa re d to pl ay (m ed iu m eff ec ts iz e) .e ye co nt ac tw as lo ng er in m us ic th er ap y th an in pl ay si ng le bl in d (a dd iti on al ly ,a ss es so rs w er e no tb lin de d to al lo ut co m e m ea su re s, in pa rt ic ul ar to es c s) sm al ls am pl e si ze n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) h ig h dr op -o ut ra te st at is tic al an al ys is pe rf or m ed on ly in co m pl et er s li m [ ] r an do m iz ed , si ng le bl in d, pa ra lle lg ro up d ur at io n: da ys 𝑛 = (m ;f ) a ge : – ye ar s m us ic tr ai ni ng (“ d ev el op m en ta l sp ee ch an d la ng ua ge tr ai ni ng th ro ug h m us ic ”; vi de ot ap ed so ng sw ith ta rg et w or ds ), 𝑛 = ( )s pe ec h tr ai ni ng (v id eo ta pe d sp ok en st or ie s w ith ta rg et w or ds ), 𝑛 = ( )n o tr ai ni ng ,𝑛 = in di vi du al se ss io ns w ith in da ys b eh av io ro bs er va tio n (v er ba lr es po ns e) of vi de ot ap ed po st te st se ss io ns n o di ffe re nc es be tw ee n m us ic an d sp ee ch th er ap y (i m pr ov em en ti n bo th gr ou ps ve rs us no tr ea tm en t) . h ig he ri m pr ov em en ti n lo w fu nc tio ni ng ch ild re n si ng le bl in d n o st an da rd iz ed ou tc om e m ea su re s n o de ta ils ab ou tt he di ag no st ic pr oc es s n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) evidence-based complementary and alternative medicine ta bl e : c on tin ue d. a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts li m an d d ra pe r [ ] r an do m iz ed ,s in gl e bl in d, cr os so ve r d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s a pp lie d b eh av io r a na ly si sv er ba l b eh av io rp lu sm us ic tr ai ni ng (s un g in st ru ct io ns ,s on gs w ith ta rg et w or ds ) ( )a pp lie d b eh av io r a na ly si sv er ba lb eh av io r ( )n o tr ai ni ng in di vi du al se ss io ns w ith in w ee ks b eh av io ro bs er va tio n (v er ba lp ro du ct io n) of vi de ot ap ed po st te st se ss io ns n o st at is tic al ly si gn ifi ca nt di ffe re nc e be tw ee n th e tw o tr ea tm en tg ro up s si ng le bl in d sm al ls am pl e si ze n o st an da rd iz ed ou tc om e m ea su re s n o de ta ils ab ou tt he di ag no st ic pr oc es s n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) th om as an d h un te r[ ] r an do m iz ed , cr os so ve r d ur at io n: w ee ks 𝑛 = (m ; f ) a ge : - ye ar s m us ic th er ap y (s on gs , in st ru m en ts ,v oc al so un ds ,a nd m ov em en t to in te ra ct w ith th e ch ild ,m us ic al or ve rb al re sp on se to th e ch ild ’s be ha vi or ) pl ay tim e (i nt er ac tw ith th e ch ild us in g to ys an d ve rb al re sp on se to th e ch ild ’s be ha vi or ) tw el ve -m in ut e se ss io ns b eh av io ro bs er va tio n (o n- ta sk an d re qu es tin g) of vi de ot ap ed se ss io ns , as se ss ed as pe rc en ta ge of se ss io n tim e si gn ifi ca nt im pr ov em en ti n so ci al ad ap ta tio n an d in iti at in g be ha vi or si n th e m us ic co m pa re d to pl ay bl in di ng no tr ep or te d sm al ls am pl e si ze n o st an da rd iz ed ou tc om e m ea su re s n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) th om ps on [ ] r an do m iz ed , pa ra lle lg ro up d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s h om e- ba se d, fa m ily -c en tr ed m us ic th er ap y (s on gs , im pr ov is at io n, st ru ct ur ed m us ic in te ra ct io ns ), pl us st an da rd ca re ,𝑛 = st an da rd ca re ,𝑛 = se ss io ns , sc he du le d w ee kl y v in el an d se ec , sr s- pr es ch oo lv er si on (p ar en tr at ed ), m b c d i- w or ds an d g es tu re s( pa re nt -r at ed ) pc r i( pa re nt -r at ed ) st at is tic al si gn ifi ca nt di ffe re nc e be tw ee n ac tiv e tr ea tm en ta nd co nt ro li n th e pr im ar y ou tc om e (v in el an d se ec -s oc ia liz at io n) .n o st at is tic al di ffe re nc e in th e ot he rs ca le s pa re nt no tb lin de d to th e in te rv en tio n sm al ls am pl e si ze b os o et al .[ ] o pe n la be l d ur at io n: w ee ks 𝑛 = (m ; f ) a ge : – ye ar s in te ra ct iv e m us ic th er ap y (s in gi ng ,p ia no pl ay in g, an d dr um m in g) n on e h ou r/ w ee k c g i- se ve ri ty ; c g i- im pr ov em en t, bp r s st at is tic al ly si gn ifi ca nt im pr ov em en ts on th e c g i- se ve ri ty ; c g i- im pr ov em en t, an d bp r s sc al e o pe n la be lt ri al (n o ra nd om iz at io n, no co nt ro lg ro up ) r at er sn ot bl in de d sm al ls am pl e si ze is er i[ ] o pe n la be l d ur at io n: – m on th s 𝑛 = (m ; f ) a ge : – ye ar s m us ic th er ap y n on e o ne - ho ur m t se ss io n/ m on th c a r s, n eu ro ho rm on al re sp on se s( co rt is ol , ad re na lin ,n or ad re na lin , a c t h ) d ec re as in g sc or es at c a r s. n o st at is tic al di ffe re nc es be tw ee n ho rm on e le ve ls be fo re an d aft er th er ap y o pe n la be lt ri al (n o ra nd om iz at io n, no co nt ro lg ro up ) sm al ls am pl e si ze u nc le ar du ra tio n u nc le ar co m pl ia nc e k al as [ ] c ro ss ov er d ur at io n: w ee ks 𝑛 = (m ;f ) ( m ild /m od er at e a sd , se ve re a sd ) a ge : – ye ar s si m pl e m us ic lis te ni ng c om pl ex m us ic lis te ni ng si x, -m in ut e in di vi du al m us ic co nd iti on s( si m pl e an d co m pl ex ) r es po ns es to jo in t at te nt io n h ig he rj oi nt at te nt io n in th e si m pl e m us ic co nd iti on fo r se ve re a sd . h ig he rj oi nt at te nt io n in th e co m pl ex m us ic co nd iti on fo r m ild /m od er at e a sd n o ra nd om iz at io n bl in di ng no tr ep or te d n o st an da rd iz ed ou tc om e m ea su re s lu nd qv is te ta l. [ ] r an do m iz ed , cr os so ve r d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s d ia gn os is of a sd on ly in pa tie nt s; ea ch pa tie nt ha d a di ag no si so fm en ta l re ta rd at io n v ib ro ac ou st ic m us ic tr ea tm en t( w ee ks ) pl ac eb o = no tr ea tm en t( w ee ks ) tw o m in se ss io ns pe rw ee k bp i( se lf- in ju ri ou s be ha vi or ;s te re ot yp ic al be ha vi or ;a gg re ss iv e be ha vi or ) b eh av io ro bs er va tio n an al ys is by vi de o re co rd in g in a sd ,v ib ro ac ou st ic m us ic st at is tic al ly re du ce d se lf- in ju ri ou s, be ha vi or s. n o ot he re ffe ct w as ob se rv ed bl in di ng no tr ep or te d sm al ls am pl e si ze n ot sp ec ifi c fo ra sd di ag no si s( th ey in cl ud ed m en ta lr et ar da tio n) n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) o nl y on e st an da rd iz ed m ea su re sc hw ar tz be rg an d si lv er m an [ ] c lu st er ra nd om iz ed , pl ac eb o co nt ro lle d (t hr ee di ffe re nt cl us te rs ac co rd in g to th e so ci al st or y ty pe ) d ur at io n: w ee ks 𝑛 = (n o da ta on ag e or ge nd er ) c om pl et er s 𝑛 = (m ;f ) a ge : – ye ar s m us ic th er ap y gr ou ps (s oc ia ls to ry su ng to th em ) n on m us ic co nt ro lg ro up s (s oc ia ls to ry re ad to th em ) -m in m us ic th er ap y se ss io n/ da y pe r w ee k a ss p (p ar en t- ra te d w ee k be fo re tr ea tm en t an d po st ed w ee k aft er ) fi ve co m pr eh en si on ch ec k qu es tio ns n o si gn ifi ca nt di ffe re nc e be tw ee n gr ou ps bl in di ng no tr ep or te d h ig h dr op -o ut ra te (n o in fo rm at io n pr ov id ed ) o nl y pe rp ro to co la na ly si s n o ac co un tin g fo rp ot en tia l co nf ou nd er s( m ed ic at io n, ot he r th er ap ie s) a sd ,a ut is m sp ec tr um di so rd er ;a ss p, a ut is m so ci al sk ill sp ro fil e; bp i, b eh av io rp ro bl em si nv en to ry ;b pr s, br ie fp sy ch ia tr ic r at in g sc al e; c a r s, c hi ld ho od a ut is m r at in g sc al e; c g i, c lin ic al g lo ba li m pr es si on ; es c s, ea rl y so ci al c om m un ic at io n sc al e; m b c d i, m ac a rt hu r- ba te sc om m un ic at iv e d ev el op m en ti nv en to ri es ;p c r i, pa re nt -c hi ld r el at io ns hi p in ve nt or y; pd d -b i, pe rv as iv e d ev el op m en ta ld is or de r- b eh av io r in ve nt or y; sr s, so ci al r es po ns iv en es ss ca le ;v in el an d se ec s, v in el an d so ci al em ot io na le ar ly c hi ld ho od sc al es . evidence-based complementary and alternative medicine significant differences between the two groups have been found. as in the previous studies, blindness is not reported. in addition, the drop-out rate is quite high and the authors only performed a per-protocol analysis. . . auditory integration training. auditory integration training (ait) involves a person listening to a selection of music which has been electronically modified. there are several kinds of ait including the berard method, the listening program, the samonas sound therapy, and the tomatis method [ ]. ait is based on the idea that some people, including some people with autism, are hypersensi- tive or hyposensitive to certain frequencies of sound. ait is designed to improve the person’s ability to process sounds by “re-educating” the brain [ ]. the cochrane collaboration recently published a system- atic review [ ] that collects the main publications in this field of research (table ). six relatively small studies [ – ] were included. all the experimental groups underwent two min sessions of ait for consecutive days. the largest studies did not report a difference between treatment and control conditions and in one case there is no evidence for long-term benefits of ait. these studies contained several flaws, like small sample sizes, wide range of participants’ base- line characteristics (age and sex), unstandardized outcome measures, and blinding. . . sensory integration therapy. individuals with asd often display impairments in sensory information processing. as a result, situations involving contact with lights, sounds, smells, tastes, or textures could be overwhelming for patients [ ]. sensory integration therapy commonly uses play activities specifically studied to modulate how the brain responds to sight, touch, sound, and movement [ ]. even if common among families with an asd child, its results have been con- troversial. we retrieved four trials [ – ] (table ). all stud- ies yielded significant improvement in several autistic core symptoms (communication, social reciprocity, and motor activity). however, only two studies used a standardized form of sensory integration therapy to allow replicability. addi- tionally, only half of the trials used standardized outcome measures, while the others were based on direct observation of behaviors or ad hoc questionnaire. another potential bias to consider is the lack of well-defined control group (some trials used fine motor activities such as tapping but with no additional details). . . drama therapy. drama represents a form of art, which could foster the development of social skills (i.e., pretention, communication, social reciprocity, and emotion recogni- tion). drama therapy may therefore represent a potential therapy for individuals with asd [ ]. in particular, one open label study (table ) investigated a specific form of theatrical therapy—sense (social emotional neuroscience endocrinology) theatre—specifically designed to ameliorate social functioning and stress in children with asd [ ]. the authors enrolled autistic children and matched normally developed subjects who would act as models for the asd patients. the authors observed a mild improvement in theory of mind (tom) skills and facial emotion recogni- tion. unfortunately, this study suffered from several flaws: the study design, the lack of a control group, and the small sample size. . . dance therapy. dance and movement therapy is an embodied treatment that uses mirroring of movements: each subject tries to mirror empathic movements of the therapist, focusing more on “attunement” than on simple imitation. this may represent the basis for more mature form of social reciprocity [ ]. mateos-moreno and atencia-doña [ ] (table ) evaluated the efficacy of a combination of dance/movement and music therapy in children with asd. the active group was compared to a control group: each participant additionally received specialized treatment for asd (i.e., behavioral and pharmacological therapy). both groups improved over time with a better profile for the active group. however, given the multicomponent intervention, it is difficult to define the single contribution of dance therapy. additionally, this study presented several flaws: the open label design, the nonrandom selection of subjects, and the small sample size. . . acupuncture. acupuncture (ap) is a form of traditional chinese medicine [ ], widely used also in western coun- tries. it consists in placing needles in the skin and near tissues in specific points, known as acupuncture points. the needle could convey also electricity (electro-ap) or laser or heat. four randomized controlled trials were retrieved according to our inclusion criteria (table ). the first ( ) [ ] used scalp acupuncture (which involved needles to be placed in specific locations such as ear, nose, hand, and foot). the authors randomly assigned children to group a (language therapy without scalp acupuncture) and children to group b (language therapy plus scalp acupuncture twice weekly for months for a total of sessions). even if the authors observed an improvement in both groups in language, no statistical analysis comparing the two groups was performed. in , seven-star needle stimulation (which used a dermatoneural hammer housing seven blunt needles forming the shape of a seven-point star) was tested in children with asd [ ]. the investigators observed a significant improvement in eeg pattern and in parent-rated language and social communica- tion. however, parents were not blinded to the intervention and each child was attending educational therapy as well. in two studies were designed and conducted. the first [ ] enrolled children with asd who were assigned to either electro-ap plus conventional treatment or sham electro- ap plus conventional treatment for weeks. there was an improvement in the clinical global impression of change and in parent-rated score of social isolation, language, attention, and motor skills. later on, the same author [ ] randomized children to tongue ap or sham tongue ap for weeks. a significant improvement in the active group was reported. it is of note that the sham ap consisted in placing needles in nonacupuncture points and in the first trial by wong and evidence-based complementary and alternative medicine ta bl e : a ud ito ry in te gr at io n tr ai ni ng in a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts b et tis on [ ] r an do m iz ed ,s in gl e bl in d, pa ra lle lg ro up , pl ac eb o co nt ro lle d d ur at io n: m on th s 𝑛 = (m ;f ) a ge : – ye ar s a it ac co rd in g to b er ar d, 𝑛 = m us ic un m od ifi ed 𝑛 = tw o m in se ss io ns fo r co ns ec ut iv e da ys a b c ,d b c ,s sq ,s p (b as el in e, – – – m on th sa fte r in te rv en tio n) n o di ffe re nc es be tw ee n tr ea tm en ta nd co nt ro lg ro up o nl y bl in di ng of ou tc om e as se ss or s st at is tic al an al ys is no t op tim al ed el so n et al . [ ] r an do m iz ed ,s in gl e bl in d, pa ra lle lg ro up , pl ac eb o co nt ro lle d d ur at io n: m on th s 𝑛 = (m ;f ) a ge : – ye ar s a it ac co rd in g to b er ar d, 𝑛 = m us ic un m od ifi ed 𝑛 = tw o m in se ss io ns fo r co ns ec ut iv e da ys a b c a, c r s, fa pc , au di to ry pr oc es si ng te st s( sc a n an d ss w ), el ec tr op hy si ol og ic al re co rd in gs (p er p) (b as el in e, - - m on th s aft er ) st at is tic al si gn ifi ca nt di ffe re nc e in a b c a at m on th s o nl y bl in di ng of ou tc om e as se ss or s st at is tic al an al ys is no t op tim al sm al ls am pl e si ze m ud fo rd et al .[ ] r an do m iz ed ,s in gl e bl in d, cr os so ve r d ur at io n: m on th s 𝑛 = (m ;f ) d ro p- ou t𝑛 = a ge : . – . ye ar s a it ac co rd in g to b er ar d si m ila rb ut w ith no nf un ct io na l he ad ph on es an d un m od ifi ed m us ic tw o m in se ss io ns fo r co ns ec ut iv e da ys a b c a (b as el in e an d ev er y m on th aft er ), di re ct ob se rv at io n of be ha vi or (b as el in e an d ev er y m on th aft er ), v in el an d, r ey ne ll la ng ua ge d ev el op m en ta l sc al es -i ii ,l ei te r (b as el in e an d m on th ) n o si gn ifi ca nt di ffe re nc e be tw ee n th e tw o gr ou ps sm al ls am pl e si ze h ig h dr op -o ut ra te (lo w co m pl ia nc e) pe r- pr ot oc ol an al ys is ,n o in te nt io n to tr ea t r im la nd an d ed el so n [ ] r an do m iz ed ,s in gl e bl in d, pa ra lle lg ro up d ur at io n: m on th s 𝑛 = (m ;f ) d ro p- ou t𝑛 = a ge : – y ea rs a it ac co rd in g to b er ar d, 𝑛 = m us ic un m od ifi ed , 𝑛 = tw o m in se ss io ns fo r co ns ec ut iv e da ys a b c a, fa pc ,h sq (b as el in e, w ee ks ,a nd - - m on th sa fte r) si gn ifi ca nt im pr ov em en ti n a b c a an d fa pc fo rt he ex pe ri m en ta l gr ou p si gn ifi ca nt di ffe re nc e at ba se lin e fr om pa tie nt si n th e a it an d co nt ro lg ro up sm al ls am pl e si ze ex pe ri m en te rn ot bl in de d (w hi le pa re nt sa nd as se ss or so fo ut co m e w er e bl in de d) ve al e [ ] r an do m iz ed ,s in gl e bl in d, pa ra lle lg ro up d ur at io n: m on th s 𝑛 = a ge :a pp ro xi m at el y – ye ar s a it ac co rd in g to th e c la rk m et ho d m us ic un m od ifi ed tw o m in se ss io ns fo r co ns ec ut iv e da ys a b c a, c r s, fa pc si gn ifi ca nt im pr ov em en ti n a b c a in th e ex pe ri m en ta l gr ou p in ve st ig at or no tb lin de d in su ffi ci en td at a on ba se lin e ch ar ac te ri st ic so f pa tie nt s sm al ls am pl e si ze z ol lw eg et al . [ ] r an do m iz ed ,d ou bl e bl in d, pa ra lle lg ro up d ur at io n: m on th s 𝑛 = a ge : – ye ar s d ia gn os is of a sd on ly in pa tie nt s a it m us ic un m od ifi ed tw o m in se ss io ns fo r co ns ec ut iv e da ys a b c a n o di ffe re nc es be tw ee n tr ea tm en ta nd co nt ro lg ro up n ot sp ec ifi c fo ra sd st at is tic al an al ys is ca rr ie d ou to n di ffe re nt sa m pl e si ze ( fo ra b c a, fo r lo ud ne ss di sc om fo rt , fo r pu re to ne th re sh ol d) a b c ,a ut is m b eh av io r c he ck lis t; a sd ,a ut is m sp ec tr um di so rd er ;c r s, c on ne rs ’r at in g sc al es ;d b c ,d ev el op m en ta lb eh av io r c he ck lis t; fa pc ,f is he r’s a ud ito ry pr ob le m s c he ck lis t; h sq ,h ea ri ng se ns iti vi ty q ue st io nn ai re ;s c a n ,s cr ee ni ng te st fo ra ud ito ry pr oc es si ng d is or de rs ;s p, se ns or y pr ob le m ;s sq ,s ou nd se ns iti vi ty q ue st io nn ai re ;s sw ,s ta gg er ed sp on da ic w or d te st . evidence-based complementary and alternative medicine ta bl e : se ns or y in te gr at io n th er ap y in a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts fa zl io gl u an d ba ra n [ ] r an do m iz ed , pa ra lle lg ro up d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – y ea rs se ns or y di et co ns is tin g of br us hi ng an d jo in t co m pr es si on fo llo w ed by ac tiv iti es lik ed by th e ch ild an d in te gr at ed in th e da ily ro ut in e (𝑛 = ) c on tr ol (𝑛 = ) -m in se ss io ns ( da ys a w ee k) c he ck lis t de ve lo pe d by th e in ve st ig at or st o qu an tif y se ve ri ty of se ns or y pr oc es si ng ab no rm al iti es si gn ifi ca nt im pr ov em en ti n tr ea tm en tg ro up sm al ls am pl e si ze bl in di ng no tr ep or te d n ot st an da rd iz ed ou tc om e m ea su re n o su ffi ci en ti nf or m at io n on tr ea tm en ta nd co nt ro la ct iv iti es pf ei ffe re ta l. [ ] r an do m iz ed , si ng le bl in d, pa ra lle lg ro up d ur at io n: w ee ks 𝑛 = (m ;f ) d ro p- ou t𝑛 = a ge : – ye ar s d ia gn os is of a sd on ly in pa tie nt s se ns or y in te gr at io n ac co rd in g to pa rh am (𝑛 = ) fi ne m ot or co nt ro lg ro up (𝑛 = ) -m in ut e se ss io ns sp m ,s r s, g a s, an d q n st -i i si gn ifi ca nt im pr ov em en ti n m an ne ri sm an d in g a s sc or e in se ns or y gr ou p co m pa re d to fin e m ot or ac tiv ity sm al ls am pl e si ze h ig h dr op -o ut ra te (a lm os t % ) o nl y pe r- pr ot oc ol an al ys is ba se lin e ch ar ac te ri st ic s di ffe re nt at ba se lin e be tw ee n th e tw o gr ou ps q n t s- ii no ta va ila bl e fo r % of su bj ec ts in bo th gr ou ps r ei lly et al . [ ] r an do m iz ed , cr os so ve r d ur at io n: un cl ea r, pr ob ab ly al ls es si on sw er e pr ov id ed in on e da y 𝑛 = (m ;f ) a ge : . – . ye ar s se ns or y in te gr at io n fi ne m ot or ac tiv iti es (p uz zl e) tw o m in se ss io ns a si ep si gn ifi ca nt di ffe re nc e in va ri et y of sp ee ch an d le ng th of ut te ra nc es fa vo ri ng fin e m ot or ac tiv ity sm al ls am pl e si ze n o st an da rd iz ed se ns or y in te gr at io n th er ap y th om ps on [ ] o pe n la be l d ur at io n: un cl ea r 𝑛 = (m ;f ) a ge :n ot re po rt ed d ia gn os is of a sd on ly in pa tie nt s se ns or y in te gr at io n ac co rd in g to pa rh am n on e su st ai ne d fo cu s ba se d on ob se rv at io n si gn ifi ca nt im pr ov em en ti n su st ai ne d fo cu s in pa tie nt sw ith a sd sm al ls am pl e si ze n ot sp ec ifi c fo ra ut is m o pe n la be lt ri al d at a co lle ct or sn ot bl in de d st at is tic al an al ys is no to pt im al n o st an da rd iz ed ou tc om e m ea su re in su ffi ci en tb as el in e da ta a si ep ,a ut is m sc re en in g in st ru m en tf or ed uc at io na lp la nn in g; g a s, g oa la tta in m en ts ca le ;q n st -i i, q ui ck n eu ro lo gi ca ls cr ee ni ng te st -i i; sp m ,s en so ry pr oc es si ng m ea su re ;s r s, so ci al r es po ns iv en es ss ca le . evidence-based complementary and alternative medicine ta bl e : a rt -r el at ed th er ap ie si n a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts c or be tt et al . [ ] o pe n la be l d ur at io n: m on th s 𝑛 = (m ; f ) a ge : to ye ar s se n se (s oc ia l em ot io na l n eu ro sc ie nc e en do cr in ol og y) th ea tr e n on e re he ar sa ls ( h ea ch )a nd si x pe rf or m an ce da te s. r eh ea rs al sw er e in iti al ly d ay pe r w ee k an d th en or da ys pe rw ee k n ep sy m em or y fo rf ac es ,a ffe ct r ec og ni tio n an d th eo ry of m in d, sr s, ss p, a ba s, ss s, sa liv ar y co rt is ol an d ox yt oc in le ve l n o di ffe re nc es in o t le ve lo rp ar en t re po rt m ea su re s. im pr ov em en ti n so ci al pe rc ep tio n an d th eo ry of m in d sk ill s o pe n la be ld es ig n sm al ls am pl e si ze bl in di ng of as se ss or sn ot re po rt ed m at eo s- m or en o an d a te nc ia -d oñ a [ ] o pe n la be l d ur at io n: w ee ks 𝑛 = (m ; f ) a ge :n ot re po rt ed (m ea n ye ar s) c om bi ne d da nc e/ m ov em en t an d m us ic th er ap y b eh av io ra la nd ph ar m ac ol og ic al tr ea tm en to nl y se ss io ns of co m bi ne d m t an d d m t th er ap y, h ou r, da ys /w ee k ec a -r po si tiv e ev ol ut io n to w ar ds a di m in ut io n of di so rd er sc or es in bo th co nt ro la nd ex pe ri m en ta l gr ou ps . o pe n la be ld es ig n sm al ls am pl e si ze bl in di ng of as se ss or sn ot re po rt ed a ba s, a da pt iv e b eh av io ra ss es sm en ts ys te m ;a sd ,a ut is m sp ec tr um di so rd er ;e c a -r ,r ev is ed c lin ic al sc al e fo rt he ev al ua tio n of a ut is tic b eh av io r; sr s, so ci al r es po ns iv en es ss ca le ,s sp ,s ho rt se ns or y pr ofi le , an d ss s, st re ss su rv ey sc he du le fo rp er so ns w ith a ut is m an d o th er d ev el op m en ta ld el ay s. evidence-based complementary and alternative medicine ta bl e : a cu pu nc tu re in a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts a lla m et al . [ ] r an do m iz ed si ng le bl in d pa ra lle lg ro up d ur at io n: m on th s 𝑛 = (m ;f ) a ge : – ye ar s a cu pu nc tu re (s ca lp ) pl us la ng ua ge th er ap y 𝑛 = la ng ua ge th er ap y 𝑛 = tw ic e w ee kl y a ra bi c la ng ua ge te st si gn ifi ca nt im pr ov em en ti n th e ac up un ct ur e gr ou p n o pl ac eb o co nd iti on n o de ta ile d ba se lin e ch ar ac te ri st ic s sm al ls am pl e si ze c ha n et al . [ ] r an do m iz ed pa ra lle l gr ou p d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s se ve n- ne ed le st ar st im ul at io n pl us co nv en tio na l ed uc at io n th er ap y 𝑛 = c on ve nt io na l ed uc at io n th er ap y 𝑛 = o ne – m in se ss io n pe rd ay , da ys pe rw ee k pa re nt ’s ra tin g qu es tio nn ai re , q ua nt ita tiv e ee g si gn ifi ca nt im pr ov em en ti n th e ac up un ct ur e gr ou p n o bl in di ng n o pl ac eb o co nd iti on n o de ta ile d ba se lin e ch ar ac te ri st ic s sm al ls am pl e si ze n o st an da rd iz ed ou tc om e m ea su re s w on g an d c he n [ ] r an do m iz ed do ub le bl in d pl ac eb o co nt ro lle d pa ra lle l gr ou p d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s a cu pu nc tu re (e le ct ro )p lu s co nv en tio n ed uc at io na lt he ra py 𝑛 = d ro p- ou t𝑛 = sh am el ec tr oa cu pu nc tu re pl us co nv en tio n ed uc at io na l th er ap y 𝑛 = d ro p- ou t𝑛 = m in , tim es w ee kl y pe d i, le ite r- r , c g i, a b c , r fr ls ,r d ls , an d w ee fi m si gn ifi ca nt im pr ov em en t m ul tic om po ne nt in te rv en tio n an d co nv en tio na l in te rv en tio n va ry fr om ch ild to ch ild n o po w er ca lc ul at io n w on g [ ] r an do m iz ed do ub le bl in d pl ac eb o co nt ro lle d pa ra lle l gr ou p d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – y ea rs a cu pu nc tu re (t on gu e) pl us co nv en tio n ed uc at io na lt he ra py 𝑛 = sh am ac up un ct ur e pl us co nv en tio na l ed uc at io na l th er ap y 𝑛 = o ne le ss th an se c se ss io n fo r da ys pe rw ee k g ri ffi th sm en ta l de ve lo pm en ta l sc al e, r fr ls , r d ls ,s pt ,a nd w ee fi m si gn ifi ca nt im pr ov em en t m ul tic om po ne nt in te rv en tio n an d co nv en tio na l in te rv en tio n va ry fr om ch ild to ch ild n o po w er ca lc ul at io n a b c ,a be rr an tb eh av io ra lc he ck lis t; a sd ,a ut is m sp ec tr um di so rd er ;c g i, c lin ic al g lo ba li m pr es si on ;p ed i, pe di at ri c ev al ua tio n d ev el op m en ti nv en to ry ;r d ls ,r ey ne ll d ev el op m en ta ll an gu ag e sc al e; r fr ls , r itv o- fr ee m an r ea ll ife r at in g sc al e; sp t, sy m bo lic pl ay te st ;w ee fi m ,f un ct io na li nd ep en de nc e m ea su re fo rc hi ld re n. evidence-based complementary and alternative medicine chen sham ap also conveyed an electrical stimulation (so it was not properly sham). . . massage. sensory hypo/hypersensitivity has become a symptom criterion for the diagnosis of asd in the dsm- [ ]. the use of touch in order to treat sensory impairment and reducing anxiety has been postulated in asd [ ]. a systematic review has recently investigated the effect of massage in asd [ ]. we retrieved four single blind, randomized trials which examined different types of massage (from simple touch to thai massage) (table ). one study did not use standardized measures of outcome. among the others, the brief report from escalona et al. [ ] involved children who were assigned to touch therapy ( min daily) provided by parents at bedtime or a control group (parents read bedtime stories to their child) for one month; the touch group showed improved social relatedness and a reduction in stereotyped behaviors. two studies from silva et al. [ , ] evaluated a massage technique (the qigong, consisting in massage manipulation from head to foot along acupuncture channels, lasting for minutes). the first report [ ] involved children with asd, randomly assigned to qigong daily for five months plus a special education program or to the special education program alone. children in the active group showed significant improvement in sensory impairment and vineland daily living and socialization subscores compared to controls. the second randomized trial [ ] involved a larger sample with the same study protocol. significant increase in socialization and communication and a reduction of sensory impairment were observed. more recently, another type of massage therapy (thai massage) [ ] was randomly administered to children with asd. the active group received thai massage plus sensory integration therapy while the control group underwent sensory integration therapy alone. thai massage was provided twice weekly for weeks. at the end of the trial, the thai massage group showed reduced anxiety and conduct problems measured through standardized parent-rated scales. . . yoga. yoga is a movement therapy which could poten- tially ameliorate behavioral problems and anxiety (table ). it is of note that yoga appears to increase gaba brain levels, even after one session [ ]. as gaba is considered to play a key role in autism pathogenesis, yoga may in theory represent a potential treatment candidate. in , rosenblatt et al. [ ] conducted a pilot study in which they investigated combined yoga, dance, and music therapy in children with asd. the program consisted in sessions of this technique: study findings showed no significant difference in the primary outcome measure—the aberrant behavioral checklist (abc) irritability subscale. in , a school based “get ready to learn yoga” program was tested for efficacy in children with autism [ ]. the intervention was a manualized yoga technique performed by the teachers daily for weeks, while the control group attended standard school morning activities. the authors found a significant reduction in teacher-rated abc scores in the intervention group. another movement therapy consisted in a mind-body exercise: children with asd were randomly assigned to either active treatment (nei yang gong, a chinese technique which “emphasizes the maintenance of a natural and relaxed attitude to achieve smooth circulation of qi and blood” and involved “simple body movement” which has to be performed in a “relaxed and natural manner”) or control treatment (progressive muscle relaxation) [ ]. overall, the nei yang gong session lasted for minutes, while the control treatment session lasted for minutes and were done twice per week for four weeks. each participant was advised to practice also at home. study findings reported increased self-control, reduced parent-rated autistic symptoms, and increased control of disruptive behaviors. in the nei yang gong group, subjects displayed greater eeg activity in the anterior cingulate cortex. . . pet therapy. the use of animals in asd relies on the hypothesis that animal movements and behaviors are more predictable and repetitive and could help children with asd to interpret social cues even in more subtle contexts (table ) [ ]. the first studies conducted on pet therapy used dogs but were flawed by the absence of any type of standardized clinical measure or a lack of diagnostic characterization of subjects. later on, more methodologically sounded trials were designed: in , equine-assisted pet therapy was evaluated with an open label, prospective trial [ ]. twenty- four children with asd entered a -to- -month waiting list and subsequently switched to the horse riding treatment for months. only twenty children completed the trial. the results showed a significant reduction of cars scores during the riding period compared to the waiting list. in , guinea pigs were used with children with asd [ ]. the study has a nested design (classrooms in schools) and the animal therapy group was compared to the waiting list. the authors reported significant improvement in social functioning compared to the control situation. . . chiropractic care. chiropractic care is a popular and widely used cam in asd [ ]. its use in patients with asd has been considered in a systematic review written by alcantara et al. [ ]. beside three case reports, the review contained one cohort study [ ] and one random- ized comparison trial [ ] (table ). in the first study, a cohort of autistic children received chiropractic care for months. behavioral symptoms, based on parent and teacher assessments, improved. additional improvements included decreased medication use. however, this study presents several biases, first of all the lack of a control group and the small sample size. the experiment conducted by khorshid and colleagues compared two different types of chiropractic care: the atlas orthogonal upper cervical spinal manipulative therapy (which is a form of chiropractic manipulation involving the instrumental percussion of the atlas to correct possible misalignments) versus full-spine spinal manipulative therapy (which is characterized by high velocity and low amplitude thrusts) in children with autism. the major improvement was found in the atlas orthogonal evidence-based complementary and alternative medicine ta bl e :m as sa ge in a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts es ca lo na et al .[ ] r an do m iz ed pa ra lle lg ro up d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s m as sa ge (s im pl e to uc h) r ea di ng st or ie s m in /d ay c on ne rs te ac he r an d pa re nt sc al es , sl ee p be ha vi or im pr ov em en t n o bl in di ng n o pl ac eb o co nd iti on si lv a et al . [ ] r an do m iz ed pa ra lle lg ro up d ur at io n: m on th s 𝑛 = (m ;f ) a ge :> ye ar s c hi ld re n st ra tifi ed ac co rd in g to co gn iti ve le ve l m as sa ge (q ig on g) pl us sp ec ia l ed uc at io n pr og ra m 𝑛 = sp ec ia l ed uc at io n pr og ra m 𝑛 = m in /d ay sp ,v in el an d, a b c im pr ov em en ti n al l sc al e ap ar tf ro m a b c an d v in el an d la ng ua ge an d m ot or ab ili tie s bl in di ng no tr ep or te d n o pl ac eb o co nd iti on sp ec ia le du ca tio n pr og ra m m ay va ry be tw ee n ch ild re n st at is tic al an al ys is pe rf or m ed on ch ild re n (t he y in cl ud ed ch ild re n in th e co nt ro lg ro up w ho w er e sw itc he d to ac tiv e tr ea tm en t) si lv a et al . [ ] r an do m iz ed , si ng le bl in d, pa ra lle lg ro up d ur at io n: m on th s 𝑛 = (m ;f ) a ge : – ye ar s m as sa ge (q ig on g) pl us sp ec ia l ed uc at io n pr og ra m 𝑛 = w ai tli st 𝑛 = m in /d ay pd d bi (t ea ch er an d pa re nt ra te d) , a b c ,s sc si gn ifi ca nt im pr ov em en ti n te ac he r- ra te d pd d bi te ac he ra pp ea rs to be bl in de d bu tn o de ta ile d in fo rm at io n n o in fo rm at io n on w ai tli st ar e pr ov id ed n o in fo rm at io n on ad di tio na l tr ea tm en ts n o sa m pl e si ze ca lc ul at io n pi ra ve je ta l. [ ] r an do m iz ed , si ng le bl in d, pa ra lle lg ro up d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s m as sa ge (th ai )p lu ss en so ry in te gr at io n 𝑛 = se ns or y in te gr at io n 𝑛 = h/ w ee k c on ne rs ’r at in g sc al es ,s le ep be ha vi or si gn ifi ca nt im pr ov em en ti n pa re nt -r at ed co nd uc t pr ob le m sa nd an xi et y n o pl ac eb o co nd iti on m ul tic om po ne nt in te rv en tio n n o im pr ov em en ti n te ac he r- ra te d sc al es (t ea ch er s w er e bl in de d w hi le pa re nt sn ot ) a b c ,a be rr an tb eh av io ra lc he ck lis t; a sd ,a ut is m sp ec tr um di so rd er ;p d d bi ,p er va si ve d ev el op m en ta ld is or de rs b eh av io ri nv en to ry ;s p, se ns or y pr ofi le ;s sc ,s en se an d se lf- r eg ul at io n c he ck lis t. evidence-based complementary and alternative medicine ta bl e :y og a in a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts r os en bl at te t al .[ ] o pe n la be l d ur at io n w ee ks 𝑛 = (m ;f ) d ro p- ou t𝑛 = (i ni tia lly en ro lle d ) a ge : – ye ar s yo ga (p lu sd an ce pl us m us ic ) n on e m in fo r se ss io ns ba sc ,a b c im pr ov em en t, bu tn o ch an ge in a b c o pe n la be ld es ig n fe w ba se lin e ch ar ac te ri st ic so fs tu dy pa rt ic ip an ts h ig h dr op -o ut ra te k oe ni g et al . [ ] o pe n la be l pr et es t- po st te st co nt ro lg ro up de si gn d ur at io n w ee ks 𝑛 = (m ;f ) d ro p- ou t𝑛 = (o ri gi na lly re cr ui te d 𝑛 = ) a ge : – ye ar s yo ga 𝑛 = sc ho ol no rm al ac tiv iti es 𝑛 = – m in /d ay a b c ,v in el an d im pr ov em en tw ith m od er at e eff ec ts iz e in th e ex pe ri m en ta l gr ou p o pe n la be ld es ig n st at is tic al an al ys is no t op tim al bl in di ng no tr ep or te d n o pl ac eb o gr ou p c ha n et al . [ ] r an do m iz ed , pa ra lle lg ro up d ur at io n w ee ks 𝑛 = (g en de rn ot re po rt ed fo rt he al l sa m pl e) a ge : – ye ar s m in d- bo dy ex er ci se (n ei ya ng g on g) 𝑛 = d ro p- ou t𝑛 = pr og re ss iv e m us cl e r el ax at io n 𝑛 = d ro p- ou t𝑛 = tw ic e pe rw ee k to w er of lo nd on te st ,c c t t, fi ve po in tt es t, a t ec , ev en t- re la te d ee g as se ss m en t si gn ifi ca nt im pr ov em en ti n th e ex pe ri m en ta lg ro up in se lf- co nt ro l bl in di ng no tr ep or te d n o pl ac eb o co nd iti on o nl y pe rp ro to co l an al ys is a b c ,a be rr an tb eh av io ra lc he ck lis t; a sd ,a ut is m sp ec tr um di so rd er ;a t ec ,a ut is m tr ea tm en te va lu at io n c he ck lis t; ba sc ,b eh av io ra la ss es sm en ts ys te m fo rc hi ld re n; c c t t, c hi ld re n’s c ol or tr ai ls te st . evidence-based complementary and alternative medicine ta bl e :p et th er ap y in a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs d os e o ut co m e m ea su re fi nd in gs c om m en ts k er n et al . [ ] o pe n la be l d ur at io n: m on th s 𝑛 = (m ;f ) a ge : – ye ar s h or se ri di ng w ai tin g lis t m in le ss on on ce a w ee k c a r s, th e ti m be rl aw n pa re nt -c hi ld in te ra ct io n sc al e, sp im pr ov em en ti n c a r s o pe n la be ld es ig n n o bl in di ng w ai tin g lis tl as ts fo r th re e m on th s u nc le ar dr op -o ut ra te o ’h ai re et al . [ ] o pe n la be l d ur at io n: w ee ks 𝑛 = (m ;f ) a ge : – ye ar s pe tt he ra py w ith g ui ne a pi g 𝑛 = w ai tin g lis t 𝑛 = tw o -m in ut e se ss io ns w ee kl y pd d bi ,s sr s im pr ov em en ti n al l ou tc om e m ea su re s o pe n la be ld es ig n n o bl in di ng a sd ,a ut is m sp ec tr um di so rd er ;c a r s, c hi ld ho od a ut is m r at in g sc al e; pd d bi ,p er va si ve d ev el op m en ta ld is or de r- b eh av io ri nv en to ry ;s p, se ns or y pr ofi le ;s sr s, so ci al sk ill sr at in g sy st em . evidence-based complementary and alternative medicine ta bl e :c hi ro pr ac tic ca re in a sd . a ut ho r ye ar ty pe an d du ra tio n of st ud y sa m pl e si ze ty pe of in te rv en tio n c om pa ra to rs o ut co m e m ea su re fi nd in gs c om m en ts a gu ila re ta l. [ ] o pe n la be l d ur at io n: m on th s 𝑛 = c hi ro pr ac tic ca re n on e m od ifi ed a ut is m c he ck lis tc a r s im pr ov em en t n o co nt ro lg ro up o pe n la be ld es ig n im pr ov em en tp ot en tia lly du e to re gr es si on to th e m ea n or no rm al de ve lo pm en t k ho rs hi d et al .[ ] r an do m iz ed ,p ar al le lg ro up d ur at io n: – m on th s 𝑛 = (m ;f ) a ge : – ye ar s a tla so rt ho go na l u pp er c er vi ca ls m t 𝑛 = fu ll sp in e sm t 𝑛 = a t ec im pr ov em en t (m or e in a o ) sm al ls am pl e si ze n o co nt ro lg ro up bl in di ng no tr ep or te d a sd ,a ut is m sp ec tr um di so rd er ;a t ec ,a ut is m tr ea tm en te va lu at io n c he ck lis t; c a r s, c hi ld ho od a ut is m r at in g sc al e; sm t, sp in al m an ip ul at iv e th er ap y. evidence-based complementary and alternative medicine group. however, there is an evident flaw in the study, that is, the lack of a control group. . discussion in recent years, cam therapies have gained attention by the scientific community: several studies have been conducted in order to investigate the efficacy and safety of cams in asd. we reviewed trials on different cams, but the findings are still inconclusive. in particular, there is a lack of proof regarding the efficacy of cam in autism. it is of interest that it is striking the contrast between the wide use of cam by families and the paucity of scientific results for alternative treatments. one possible reason for this discrepancy is that cam therapies are usually considered as “natural,” with an optimal safety profile and less side effects than conventional medications [ ]. this is partly true, as nonbiological cams are virtually free from adverse events; unfortunately, however, several alternative treatments are prone to safety issues, such as chelation or high doses of vitamins. additionally, even if no serious adverse events were recorded in the revised trials, some treatments as elimination diets could be associated with potentially harmful, long-term side effects, such as nutritional deficits in children with higher food selectivity. in fact, cam appears to be safe in the short period, but no data are available for longer treatment. considering the reviewed treatments, among biologically based cams only gluten/casein-free diet, omega , vitamin supplementation (vitb , vitb , and tetrahydrobiopterin), and hyperbaric oxygen therapy have been more extensively studied: all the other biological therapies were tested in single trials and therefore provided no sufficient data in order to determine their usefulness in clinical practice. elimination diet does not appear effective in treating asd core symptoms: the fact that individual patients may benefit from special dietary interventions could be hypothesized as the result of subclinical intolerance to specific food allergen [ ]. omega supplementation provided no evidence for recommendation in asd: the only positive results come from a single open label trial [ ]. trials evaluating vitamin supplementation yielded inconsistent results: as all studies presented several caveats, more data should be obtained before definitive judgment. additionally, for instance, vitb should be administered through injection, thus potentially reducing compliance [ ]. hyperbaric oxygen therapy has been only recently scientifically tested: study findings are promising but not completely consistent. future studies with larger sample size, well-designed randomization, blindness, and definition of a placebo condition will be needed. among nonbiologically based cams, the treatments more extensively investigated are music therapy, auditory integration training, sensory integration therapy, acupunc- ture, and massage. no sufficient data are available for several interventions such as dance therapy, drama therapy, or pet therapy. it is of note that music therapy is not always regarded as a cam treatment but considered as a part of behavioral intervention [ ]: this could explain the relatively high number of studies on music compared to other cams. promising evidence supports the use of music in children with asd, which seems to impact several symptom domains such as communication, social reciprocity, and emotion. additionally, music therapy and all nonbiological cam treat- ments appear extremely safe with no side effects. results from auditory integration training studies are conflicting: more trials should be designed to better elucidate the findings; in particular, more attention should be given to blindness of investigators and assessors and to the choice of widely used standardized outcome measures. evidences from sensory integration therapy, acupuncture, and massage cautiously support the use of these treatments in clinical care: however, there are several flaws that should prevent overinterpretation of the findings (small sample sizes, unclear blinding of the assessors, lack of a defined placebo condition, and multicom- ponent intervention). overall, there is sparse evidence on the usefulness of cam treatments in asd. a potential explanation for these unclear results is that well-designed studies have only recently been developed and usually have limited sample size. more- over, the heterogeneous nature of asd and the presence of possible comorbidities could have impaired several trials which lacked a correct stratification of participants. interest- ingly, almost all the reviewed trials were focused on children with asd: as prevalence rates of asd are increasing con- stantly, more adults each year are confronting the challenges of autism. thus it will be interesting to test cam therapies in an adult population. we advise practitioners to encourage patients and their families to discuss the efficacy and safety of all cams. patients must be informed of possible interactions between cams and currently prescribed drugs. clinicians should allow families or patients to try cams with limited clinical evidence if they are safe and cheap and if they do not prevent patients from obtaining evidence-based treatments (i.e., behavioral therapies). it is of note that several cams could be easily used together with standard clinical care: in particular, nonbiolog- ically based cams (i.e., music therapy, pet therapy) could be added to conventional treatment, not as a replacement but as an augmentation or implementation of standard therapy. for instance, massage or music could reduce anxiety and enhance positive response to behavioral and educational treatments. practitioners should advise patients to try one cam at a time and should constantly monitor clinical changes and adverse events. in conclusion, there are still few data on the potential effi- cacy of cam in autism, and no evidence-based recommen- dation could be done so far for the use of such therapies. to shed more light on cam efficacy in autism, large randomized controlled trials with a better characterization of patients are needed. conflict of interests the authors declare that there is no conflict of interests regarding the publication of this paper. evidence-based complementary and alternative medicine references [ ] s. blenner and m. augustyn, “is the prevalence of autism increasing in the united states?” the british medical journal, vol. , article id g , . 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[ ] j. alcantara, j. d. alcantara, and j. alcantara, “a systematic review of the literature on the chiropractic care of patients with autism spectrum disorder,” explore: the journal of science and healing, vol. , no. , pp. – , . s jrv .. psychological medicine cambridge.org/psm review article cite this article: connors mh, quinto l, mckeith i, brodaty h, allan l, bamford c, thomas a, taylor john-p, o’brien jt ( ). non-pharmacological interventions for lewy body dementia: a systematic review. psychological medicine , – . https:// doi.org/ . /s received: may accepted: october first published online: november key words: caregiver support; dementia with lewy bodies; lewy body dementia; neuropsychiatric symptoms; non-pharmacological; parkinson’s disease dementia author for correspondence: john o’brien, e-mail: john.obrien@medschl.cam.ac.uk © cambridge university press . this is an open access article, distributed under the terms of the creative commons attribution licence (http://creativecommons.org/licenses/ by/ . /), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited. non-pharmacological interventions for lewy body dementia: a systematic review michael h. connors , , , lena quinto , ian mckeith , henry brodaty , , louise allan , claire bamford , alan thomas , john-paul taylor and john t. o’brien sydney medical school, university of sydney, sydney, nsw, australia; dementia centre for research collaboration, unsw sydney, sydney, nsw, australia; centre for healthy brain ageing, unsw sydney, sydney, nsw, australia; institute of neuroscience, newcastle university, newcastle, united kingdom; institute of health and society, newcastle university, newcastle, united kingdom and department of psychiatry, university of cambridge, cambridge, united kingdom abstract lewy body dementia (consisting of dementia with lewy bodies and parkinson’s disease dementia) is a common neurodegenerative disease characterised by visual hallucinations, fluc- tuating attention, motor disturbances, falls, and sensitivity to antipsychotics. this combin- ation of features presents challenges for pharmacological management. given this, we sought to review evidence for non-pharmacological interventions with patients with lewy body dementia and their carers. bibliographic databases were searched using a wide range of search terms and no restrictions were placed on study design, language, or clinical setting. two reviewers independently assessed papers for inclusion, rated study quality, and extracted data. the search identified studies including two randomised controlled trials with avail- able subgroup data, seven case series, and case studies. most studies reported beneficial effects of the interventions used, though the only sizeable study was on dysphagia, showing a benefit of honey-thickened liquids. given the heterogeneity of interventions and poor qual- ity of the studies overall, no quantitative synthesis was possible. overall, identified studies sug- gested possible benefits of non-pharmacological interventions in lewy body dementia, but the small sample sizes and low quality of studies mean no definite recommendations can be offered. our findings underscore the clear and urgent need for future research on this topic. introduction lewy body dementia is a common neurodegenerative disease in older people (walker et al. ). it is responsible for – % of diagnosed cases of dementia (vann jones & o’brien, ), giving it a likely prevalence of around % in people over years old (ballard et al. ). the disease is characterised by fluctuations in attention and alertness, recurrent visual hallucinations, and parkinsonian motor features (mckeith et al. ). it is broadly considered to consist of two related disorders – dementia with lewy bodies and parkinson’s disease dementia – that are distinguished by the relative timing of when cognitive and motor symp- toms appear. dementia with lewy bodies is diagnosed if dementia develops either prior to parkinsonian motor symptoms or within year of their onset. by contrast, parkinson’s disease dementia is diagnosed if dementia develops after year of parkinsonian motor symptoms. the two disorders share a common underlying pathophysiology, but likely vary in the sequence by which brain areas underpinning cognition and motor function are affected (aarsland et al. ; mckeith, ). lewy body dementia poses a number of challenges for clinical management that differ from those of other dementias. people with lewy body dementia typically experience visual hallu- cinations and may be more likely to have delusions than people with other types of dementia (ballard et al. ; aarsland et al. ; brodaty et al. ). these types of symptoms can be very distressing to both patients and their carers, and are a risk factor for early institutional- isation (black & almeida, ; brodaty et al. ). pharmacological management, however, is limited because of the condition’s adverse sensitivity to neuroleptics (antipsychotic drugs) (mckeith et al. ; aarsland et al. ; ballard et al. ). antidepressants also appear to be poorly tolerated (culo et al. ) with no clear evidence that they are effective for treat- ing mood disturbances in this population (ballard et al. ; stinton et al. ), though fur- ther research is needed. at the same time, patients typically have parkinsonian motor disturbances and treatment responses are limited by the fact that some antiparkinson medica- tions can exacerbate psychotic symptoms (mckeith et al. ). people with lewy body dementia are also prone to falls, which further increases the risks of using medications that exacerbate orthostatic hypotension, impair cognition, or otherwise predispose to falls. https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/psm https://doi.org/ . /s https://doi.org/ . /s mailto:john.obrien@medschl.cam.ac.uk https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core finally, people with lewy body dementia may undergo faster cog- nitive decline (rongve et al. ), require higher costs of care (murman et al. ; boström et al. ; vossius et al. ), result in greater caregiver burden (svendsboe et al. ), and progress more quickly to death (oesterhus et al. ) than people with alzheimer’s disease and other dementias. despite these challenges and the relatively high prevalence of the disease, the evidence base for intervention strategies remains unclear. a previous systematic review and meta-analysis of pharmacological treatments for lewy body dementia identified a lack of high-quality evidence for commonly used drugs in this population, though found evidence for efficacy of cholinesterase inhibitors (stinton et al. ). another systematic review evalu- ated the benefits of exercise in lewy body dementia and likewise found little high-quality research (inskip et al. ). there is, however, no synthesis of evidence for non-pharmacological options more generally for people with lewy body dementia. such options have been shown to be helpful in other types of dementia (brodaty & arasaratnam, ; livingston et al. ; orgeta et al. ), but are likely to be especially important in lewy body dementia given the risks of medications in this popu- lation. in this paper, we addressed this issue and reviewed studies that assessed non-pharmacological interventions for patients with lewy body dementia. method the protocol for this systematic review was registered at prospero (registration number crd ). eligibility criteria the review focused on primary research that assessed a non- pharmacological intervention for either patients with lewy body dementia or carers of such patients. the review considered studies evaluating non-pharmacological interventions in the broader cat- egories of dementia or parkinson’s disease if the results of a lewy body dementia subgroup were available. studies that were con- founded by a concurrent pharmaceutical intervention (i.e. medi- cation initiated at the same time as a non-pharmacological intervention or given to one group in a study but not the other) were excluded. there were no other restrictions on study design and no requirements for a comparator group. there were also no restrictions on language, time period, or clinical context in which the study was conducted. search strategy the search identified studies through bibliographic databases, trial registers, and the grey literature. bibliographic databases and trial registers included the following: medline ( –present); premedline, pubmed; embase ( –present), scopus, web of science ( –current); psychinfo ( –present); cinahl ( –present); cochrane libraries: cochrane database of system- atic reviews ( –october ), cochrane central register of controlled trials (august ), cochrane methodology register ( rd–quarter ); other ebm databases: acp journal club ( –september ), database of abstracts of reviews of effects ( st-quarter ), health technology assessment ( rd-quarter ), and nhs economic evaluation ( st-quarter ); ageline ( –present); alois; amed (allied and complementary medicine; –present); pedro (physiotherapy evidence database; –present); social work abstracts ( – present); and the national association of social workers (nasw) clinical register ( th edition). the grey literature was searched using such resources as sigle (system for information on grey literature in europe), ntis (national technical information service) database, and psychextra ( –present). the search strategy used only population and intervention terms to maximise the likelihood of identifying relevant studies (comparator and outcome terms were not used). the population was people with lewy body dementia or their carers. this was identified using the search terms: [(lewy or park*) and dementia]. interventions were any non-pharmacological treat- ment and identified using a wide range of terms: (activit*, acu- puncture, alternative, animal, aromatherapy, art therapy, assisted, balance, behav*, bicycle, calisthenics, carer intervention, caregiver intervention, cbt, chi gong, cognit*, cognitive behav- ioral therapy, cognitive behavioural therapy, counsel*, creative arts, dance, dancing, diet, direct current stimulation, drama, ect, educat*, electroconvulsive therapy, enhanc*, environmental intervention, environmental modification, exercise, flexibility, humor therapy, humour therapy, hydrotherapy, intervention*, leisure, light therapy, management, martial arts, massage, medita- tion, montessori, multisensory, music, non-pharm*, nonpharm*, nutrition, occupational therapy, pet therapy, physical activity, physical therapy, physiotherapy, pilates, psychoeducation, psy- chol*, psychosocial, psychotherapy, qi gong, reality orientation, recreation*, reminiscence, resistance training, run*, sensory, simu- lated presence, stimulation, snoezelen, support*, support group*, swim*, tai chi, therap*, therapeutic activity, tms, training, train- ing carers, training caregivers, transcranial magnetic stimulation, treatment*, validation, weight training, yoga). searches were con- ducted on october . in addition to bibliographic database searches, the reference lists of papers included in the review and previous systematic reviews on both lewy body dementia and non-pharmacological interventions were checked for relevant papers. advice was also sought from experts in the field. study selection two reviewers (mhc and lq) independently assessed search results for inclusion by title and abstract. all articles deemed rele- vant by either reviewer were obtained in full. both reviewers then independently evaluated full-text articles for inclusion. any dis- agreements were resolved through discussion or, if necessary, with a third reviewer (jto). data extraction two reviewers independently extracted relevant data from publi- cations using a standardised form. this included participant details (e.g. demographics, number, recruitment, clinical context, dementia severity), intervention type, study design, measures, and results. qualitative data were also collated. the primary outcomes were measures of cognition, function, neuropsychiatric symptoms, and motor symptoms. the second- ary outcomes were measures of any other clinically relevant out- comes, such as quality of life, carer burden, financial costs, other symptoms (sleep or autonomic disturbances), and objective end- points (e.g. falls, hospitalisation, institutionalisation, mortality). secondary outcomes also included the perceived acceptability of michael h. connors et al. https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core treatments, reported side effects, and dropout rates (a measure of treatment acceptability). quality assessment two reviewers independently assessed study quality and risk of bias using standardised tools. these included the effective public health practice project quality assessment tool for quantitative studies (effective public health practice project, ; armijo-olivo et al. ) and the nice methodology checklist: qualitative studies (nice, ). any disagreements were resolved through discussion. data synthesis although a quantitative synthesis of findings using meta-analytic techniques was originally intended, this was not possible due to the small sample sizes and poor quality of the included studies. as a result, only a descriptive synthesis was provided. results search results the search identified publications, of which were unique and were duplicates. of these, were considered by one or both reviewers to be potentially relevant and obtained in full. in turn, studies were found eligible for inclusion (a flow diagram in prisma format is shown in fig. ). the included studies consisted of case studies (kung & o’connor, ; loher et al. ; graff et al. ; cheston et al. ; huh et al. ; freund et al. ; ciro et al. ; gil-ruiz et al. ; tabak et al. ; dawley, ; hsu et al. ; ricciardi et al. ), seven case series (rasmussen et al. ; rochester et al. ; takahashi et al. ; ota et al. ; elder et al. ; yamaguchi et al. ) – two of which were reported in the same paper (takahashi et al. ) – and two randomised controlled trials (logemann et al. ; telenius et al. ). both randomised trials focused on the broader conditions of dementia and/or parkinson’s disease but had separate results for a lewy body dementia subgroup available. one case report was reported in two separate papers (freund et al. ; barnikol et al. ); our descriptive synthesis focused on the more detailed of these papers (freund et al. ). a further case report on elec- troconvulsive therapy was excluded (fujiwara et al. ) because of a concurrent pharmacological intervention. twelve studies focused on dementia with lewy bodies (kung & o’connor, ; rasmussen et al. ; cheston et al. ; huh et al. ; takahashi et al. ; ota et al. ; ciro et al. ; gil-ruiz et al. ; hsu et al. ; telenius et al. ; yamaguchi et al. ), eight focused on parkinson’s disease dementia (loher et al. ; graff et al. ; logemann et al. ; freund et al. ; rochester et al. ; tabak et al. ; dawley, ; ricciardi et al. ), and one included patients from both groups (elder et al. ). a summary of studies is shown in table . quality assessment of the studies, were rated as poor quality due to their small sample size, uncertainties about recruitment, and the lack of a control group. one randomised controlled trial, which focused on exercise in nursing homes for patients with dementia (telenius et al. ), was evaluated as poor quality with respect to lewy body dementia specifically (it only included four partici- pants with the condition and these participants did not complete all tasks) (inskip et al. ). the other randomised controlled trial (logemann et al. ), which investigated dietary fluid and postural interventions for dysphagia, was evaluated as mod- erate quality. this study, however, was limited by its lack of blind- ing and the fact that it relied on measures of immediate efficacy in a research setting, without any longer term follow-up or measures of real-world effectiveness. it was also limited by the absence of a control group that did not receive a treatment, making it difficult to establish the absolute effectiveness of the interventions. participants the total number of participants across the included studies was . this comprised patients with dementia with lewy bodies and patients with parkinson’s disease dementia (of whom, were from one study; logemann et al. ). demographic information was not consistently reported. it was not provided for the subgroup of patients with parkinson’s disease demen- tia in the largest study (logemann et al. ) and for two case series (ota et al. ; yamaguchi et al. ) – altogether participants. of the data available (n = ), the mean age of par- ticipants was . years (s.d. = . ) and included males and females. measures of patients’ cognition and dementia severity were lacking from the majority of reports. of the studies, nine recruited participants from nursing homes or hospitals, five recruited participants from the community, and seven did not report participants’ residential status. one of the studies that recruited participants from nursing homes examined the effect of an intervention on both a patient with dementia with lewy bodies and her carers (huh et al. ). interventions interventions included carer education (huh et al. ), psycho- logical interventions (for visual hallucinations) (ota et al. ), physical exercise (tabak et al. ; telenius et al. ), gait cue- ing (rochester et al. ), environmental modification (gil-ruiz et al. ) (for mirrored self-misidentification, a delusion that usually occurs in the context of dementia; connors & coltheart, ; connors et al. ), music (hsu et al. ), simulated presence (cheston et al. ), occupational therapy (graff et al. ; ciro et al. ), physical therapy (dawley, ), dietary fluid and postural interventions to prevent aspiration (logemann et al. ), electroconvulsive therapy (kung & o’connor, ; rasmussen et al. ; takahashi et al. ; yamaguchi et al. ), transcranial magnetic stimulation (takahashi et al. ), transcranial direct current stimulation (elder et al. ), and deep brain stimulation (loher et al. ; freund et al. ; ricciardi et al. ). the most studied interventions were electroconvulsive therapy (four studies) and deep brain stimulation (three studies). effectiveness of interventions given the heterogeneity of interventions and the poor quality of the research evidence, no quantitative synthesis was possible. a descriptive summary of individual studies is provided in table . all studies reported some effectiveness of their respective intervention. the strongest evidence came from the randomised psychological medicine https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core control trial that assessed interventions to prevent fluid aspir- ation in participants with dysphagia (logemann et al. ). this trial compared honey-thickened fluids, nectar-thickened fluids, and a chin-down posture in patients with parkinson’s disease dementia (see table ). it found that the use of honey-thickened fluids was superior to the other two methods in preventing fluid aspiration as measured by video- fluorographic swallow studies. four small uncontrolled studies (kung & o’connor, ; rasmussen et al. ; takahashi et al. ; yamaguchi et al. ) – involving participants in total – found that electrocon- vulsive therapy had some effectiveness in treating depression in dementia with lewy bodies. in one of these studies, two patients exhibited confusion immediately after electroconvulsive therapy (rasmussen et al. ); in another study, an unspecified number displayed signs of autonomic dysfunction, though without any last- ing effects (takahashi et al. ). no other adverse events were reported. another three case studies of deep brain stimulation (loher et al. ; freund et al. ; ricciardi et al. ) identi- fied benefits in either cognition or motor symptoms depending on the location of stimulation in patients with parkinson’s disease dementia. all three studies used different brain locations for stimu- lation. none of these studies reported adverse effects. other individual studies variously reported benefits of carer education for reducing agitation (huh et al. ); psychological interventions for reducing distress around visual hallucinations (ota et al. ); physical exercise to improve gait and function (tabak et al. ; telenius et al. ); gait cueing to improve gait speed (rochester et al. ); environmental modification to reduce the distress associated with mirrored self- misidentification delusion (gil-ruiz et al. ); music therapy to reduce agitation (hsu et al. ); simulated presence to reduce distress (cheston et al. ); occupational therapy interventions to improve functional ability (graff et al. ; ciro et al. ); physical therapy to improve gait (dawley, ); dietary fluid and postural interventions to prevent aspiration (logemann et al. ); transcranial magnetic stimulation to reduce depression (takahashi et al. ); and transcranial direct current stimula- tion to improve attention (elder et al. ) (see table ). for all these studies, however, limitations in their design, including small sample sizes, lack of blinding, and lack of adequate controls, mean that it is not possible to rule out confounding, selection fig. . prisma flow chart for study selection. *two of the studies were reported in the same article. michael h. connors et al. https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core table . studies assessing a non-pharmacological intervention for lewy body dementia study intervention design participants main outcomes findings logemann et al. ( ) interventions to prevent aspiration of fluids in patients with dysphagia (three conditions: honey-thickened fluids v. nectar-thickened fluids v. chin-down posture; all patients received all three interventions) randomised controlled trial pdd with dysphagia (from a sample of patients with dysphagia and either dementia or parkinson disease) aspiration (as measured by videofluorographic swallow studies) honey-thickened fluids were superior to both nectar-thickened fluids and chin-down posture in reducing aspiration. overall, % of patients aspirated when given honey-thickened fluids, % of patients aspirated when given nectar-thickened fluids, and % of patients aspirated when put in a chin-down posture. pairwise comparisons were statistically significant ( p < . ) telenius et al. ( ; data from inskip et al. ) exercise (high-intensity functional exercises two sessions/week for weeks v. control group) randomised controlled trial four dlb (from a sample of patients with dementia) gait speed, balance, other physical measures, function patients in the exercise group showed signs of improved gait speed. the small number of participants with lewy body dementia in each condition and missing data prevented between-group statistical comparisons tabak et al. ( ) exercise (stationary cycling; three sessions/week for weeks) case study one pdd (from a sample of two patients with parkinson disease) cognition, function, quality of life, gait speed the patient showed improvements in cognition, quality of life, and gait speed rochester et al. ( ) interventions to improve gait (auditory cueing of gait with a metronome and verbal instructions in a single session) case series five pdd (from a sample of nine patients with parkinson disease) gait speed, stride amplitude cues that focused attention on temporal aspects (stepping to the metronome’s beat) and spatial aspects (taking large steps) appeared to improve gait speed and stride amplitude dawley ( ) physical therapy (lee silverman voice treatment-big intervention; eight sessions over months) case study one pdd gait speed, balance, function the patient showed some improvements in gait speed, balance, and functional ability despite poor compliance with the intervention huh et al. ( ) multi-component intervention including carer education ( × h sessions) and tailored environmental modification case study one dlb agitation, function, carer burden the patient displayed less agitation. the carer reported less distress. functional measures, although collected, were not reported ota et al. ( ) psychological intervention for visual hallucinations, including psychoeducation and environmental modification (duration and details not specified) case series two dlb anxiety, frequency and content of hallucinations patients reported reduced anxiety around hallucinations and that hallucinations were less frequent (abstract only; details not provided) gil-ruiz et al. ( ) environmental modification for mirrored self-misidentification delusion (reducing the mirror size and personalising it with artwork) case study one dlb with delusion signs of the delusion, patient’s distress at mirror the patient did not display the delusion in front of the modified mirror (when the modifications were inadvertently removed, the delusion returned; when the (continued) psychological medicine https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core table . (continued.) study intervention design participants main outcomes findings modifications were replaced, the delusion again subsided) hsu et al. ( ) music therapy (one interactive session tailored to the patient) case study one dlb agitation patient showed reduced agitation and anxiety after the session according to the experimenter cheston et al. ( ) simulated presence (two sessions) case study one dlb (from a sample of six patients with dementia) distress patient showed less distressed behaviour (e.g. less frequent asking to go home) and more prosocial behaviour (e.g. talking calmly with others) after the sessions ciro et al. ( ) occupational therapy (‘skill building through task-oriented motor practice’; stomp; five sessions/week for weeks) case study one dlb function ( tasks: ability to stand from a recliner, put on eyeglasses, and brush teeth) the patient improved in her abilities to stand from a recliner and put on her eyeglasses. the patient, however, showed no improvement in her ability to brush her teeth graff et al. ( ) occupational therapy (system-based intervention focused on improving the patient’s functional abilities and his carer’s behaviours) case study one pdd function, quality of life, qualitative reports of both patient and carer the patient showed some improvement in function and reported greater autonomy and quality of life. his carer reported improved communication with the patient and better understanding of the condition kung & o’connor ( ) electroconvulsive therapy (unilateral; seven sessions) case study one dlb depression, other neuropsychiatric symptoms patient demonstrated less depression and fewer neuropsychiatric symptoms for weeks after treatment. these benefits, however, were not sustained thereafter rasmussen et al. ( ) electroconvulsive therapy (mostly bilateral, though details varied with patient) case series seven dlb depression participants reported less depression after treatment; two participants also reported less frequent hallucinations. group data were not reported. longer term outcomes were unclear yamaguchi et al. ( ) electroconvulsive therapy (details not provided) case series six dlb depression, psychotic symptoms, motor function (details not provided) patients showed less depressive and psychotic symptoms after treatment, as well possibly reduced motor symptoms (abstract only; group data and details not provided) takahashi et al. ( ) electroconvulsive therapy (bifrontotemporal; six sessions) case series eight dlb with depression depression patients reported lower depression scores on the hamilton depression rating scale after treatment (before treatment, mean = . , s.d. = . ; after treatment, mean = . , s.d. = . ; p < . ) (continued) michael h. connors et al. https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core bias, experimenter expectancy, publication bias, and other causes for the reported effects. discussion the systematic review identified very little research on non- pharmacological interventions in lewy body dementia. no rando- mised control trials focusing specifically on lewy body dementia were identified and the majority of research consisted of case studies and case series. of the studies identified, the best quality evidence came from a randomised control trial that focused on preventing fluid aspiration in parkinson’s disease patients with dysphagia (logemann et al. ). as already noted, however, even this study was limited by the fact that it only examined the immediate effects of interventions in an experimental context and did not assess longer term effectiveness in more naturalistic table . (continued.) study intervention design participants main outcomes findings takahashi et al. ( ) transcranial magnetic stimulation (dorsolateral prefrontal cortex bilaterally; sessions) case series six dlb with depression depression patients reported lower depression scores on the hamilton depression rating scale after treatment (before treatment, mean = . , s.d. = . ; after treatment, mean = . , s.d. = . ; p < . ) elder et al. ( ) transcranial direct current stimulation (single min session) case series five dlb, eight pdd neuropsychological battery focused on attention and visuoperceptual abilities patients showed improvements in some measures of attention after treatment (patients reported more correct answers on a choice reaction time task, dz = . , and showed faster reaction times on a digit vigilance task, dz = . ). there were no changes in other measures of attention or visuoperceptual performance freund et al. ( ; also described in barnikol et al. ) deep brain stimulation (two electrodes in the nucleus basalis of meynert; two electrodes in the subthalamic nucleus) case study one pdd cognition, motor symptoms patient showed improved cognition and motor symptoms depending on the location stimulated: stimulating the nucleus basalis of meynert was associated with better cognition and less apraxia, whereas stimulating the subthalamic nucleus was associated with less parkinsonian motor symptoms loher et al. ( ) deep brain stimulation (single electrode in the left internal segment of globus pallidus) case study one pdd motor symptoms, cognition, and function the patient’s right-sided motor symptoms improved considerably. the patient’s cognitive and functional abilities, however, continued to decline ricciardi et al. ( ) deep brain stimulation (unilateral stimulation of the pedunculopontine nucleus) case study one pdd cognition the patient’s cognition continued to decline gradually. after years, stimulation was turned off and the patient’s cognition deteriorated significantly. stimulation was then resumed and the patient’s cognition returned to what it was immediately prior to switching stimulation off dlb, dementia with lewy bodies; pdd, parkinson’s disease dementia. psychological medicine https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core settings. overall, given the heterogeneity of interventions, small sample sizes, and poor quality of research, no treatment recom- mendations can be offered. the lack of research in this area is in contrast to the large amount of research on non-pharmacological interventions in other types of dementia (brodaty & arasaratnam, ; livingston et al. ; orgeta et al. ; livingston & cooper, ; seeher & brodaty, ). it is consistent, though, with what has been found in other systematic reviews on lewy body dementia (hindle et al. ; stinton et al. ; inskip et al. ). despite the lack of research, however, non- pharmacological interventions are likely to be important in the management of lewy body dementia. as already noted, pharmacological treatment of psychotic symptoms and move- ment disturbances in this condition is limited by the difficulties patients have tolerating first-line medications. at the same time, there is evidence for the effectiveness of non- pharmacological interventions for similar symptoms in other condi- tions. in the case of psychosis, for example, multi-factorial interven- tions, including physical activity, occupational therapy, and music therapy, have some evidence of effectiveness in other types of dementia (brodaty & arasaratnam, ; chen et al. ). in the case of motor disturbances, interventions such as exercise and gait training have been found to be effective in parkinson’s disease (bloem et al. ). there is also strong evidence that non- pharmacological interventions are effective at ameliorating symp- toms that are common across different dementias (brodaty & arasaratnam, ; livingston et al. ; orgeta et al. ; seeher & brodaty, ). caregiver education, training, and support, for example, have been shown to reduce both carers’ distress and patients’ neuropsychiatric symptoms (brodaty & arasaratnam, ; seeher & brodaty, ). likewise, psychological interventions, such as cognitive behavioural therapy, have been shown to reduce patients’ depression (orgeta et al. ). finally, organised activities, music therapy, and sensory stimulation have been shown to reduce patients’ agitation (livingston et al. ). all of these interventions could be investigated more systematically in lewy body dementia. altogether, the review highlights the clear and urgent need for research in this area. possible barriers to this include challenges establishing the diagnosis and distinguishing it from other dementias (mckeith et al. ; vann jones & o’brien, ); the limited research resources devoted to lewy body dementia as opposed to other neurodegenerative conditions; and the gen- eral lack of funding for non-pharmacological interventions. each of these, however, is not insurmountable. the use of multi- centre registries or networks of centres with expertise in lewy body dementia, for example, could help to address the problem of recruitment. given the prevalence of the disease, its dispropor- tionately high social and economic burden (murman et al. ; boström et al. ; vossius et al. ; svendsboe et al. ), and the limited suitability of medications, future research into non-pharmacological interventions is important to improving management at both individual and population levels. acknowledgements. this review presents independent research from the diamond-lewy study funded by the national institute for health research (nihr) under its programme grants for applied research programme (dtc-rp-pg- - ). the views expressed are those of the author(s) and not necessarily those of the national health service (nhs), the nihr or the department of health. conflicts of interest. job has acted as a consultant or received grant income from ge healthcare, avid/lilly, taurx, axon, and axovant. hb has worked on drug trials for patients with alzheimer’s disease sponsored by major pharma- ceutical companies including eisai pharmaceuticals, eli lilly and company, glaxosmithkline, h lundbeck a/s, janssen-cilag pty limited, medivation inc., novartis pharmaceuticals, nutricia, pfizer inc., prana biotechnology limited, sanofi-aventis, voyager pharmaceutical corporation, and wyeth limited. hb has also been a consultant, advisory board member, and sponsored speaker for baxter, h lundbeck a/s, janssen-cilag pty limited, medivation inc., novartis pharmaceuticals, pfizer inc., prana biotechnology limited, voyager pharmaceutical corporation, and wyeth limited. j-pt has acted as a consultant and been paid speaker fees by ge healthcare, axovant, and shire pharmaceutical. mhc, lq, im, la, cb, and at have no conflicts of interest to declare. author contributions. mhc conducted the search, reviewed papers for inclusion and quality, extracted data, and wrote the paper. lq reviewed papers for inclusion and quality and extracted data. jto supervised the project, which all authors were involved in conceptualising. all authors revised the manu- script for critically meaningful content and approved the final version. references aarsland d, brønnick k, ehrt u, de deyn pp, tekin s, emre m and cummings jl ( ). neuropsychiatric symptoms in patients with parkinson’s disease and dementia: frequency, profile and associated care giver stress. journal of neurology, 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( ). lewy body demen- tias. the lancet , – . yamaguchi y, matsuoka k, ueda j, takada r, takahashi m, kiuchi k, hashimoto k, kosaka j, yasuno f and kishimoto t ( ). the effect of electroconvulsive therapy on psychiatric symptoms of dementia with lewy bodies. journal of neuropsychiatry and clinical neurosciences , e . michael h. connors et al. https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core 	non-pharmacological interventions for lewy body dementia: a systematic review 	introduction 	method 	eligibility criteria 	search strategy 	study selection 	data extraction 	quality assessment 	data synthesis 	results 	search results 	quality assessment 	participants 	interventions 	effectiveness of interventions 	discussion 	acknowledgements 	references randomized controlled study on the effectiveness of animal‐assisted therapy on depression, anxiety, and illness perception in institutionalized elderly original article randomized controlled study on the effectiveness of animal-assisted therapy on depression, anxiety, and illness perception in institutionalized elderly caterina ambrosi , charles zaiontz, giuseppe peragine, simona sarchi and francesca bona psychology unit, ies abroad c/o università catto- lica del sacro cuore, milan and fondazione santa chiara long-term geriatric care, centro multiser- vizi per la popolazione anziana, lodi, italy correspondence: dr caterina ambrosi phd, psychology unit, ies abroad c/o università cattolica del sacro cuore, via carducci , milan, italy. email: caterinambrosi@gmail.com disclosure: none declared. received january ; revision received february ; accepted june . key words: animal-assisted therapy, depression, dog, elderly, illness perception. abstract aim: the aim of this study was to verify dog-assisted therapy’s effective- ness on depression and anxiety in institutionalized elderly. patients’ illness perception was examined to identify core beliefs regarding mood, personal control, and illness coherence because they can affect treatment compli- ance. subjective perception of pain, social interaction, and setting-bound observable variables were also studied. methods: this study involved a randomized sample of institutionalized patients years of age and older; the treatment group had subjects and the control group had subjects. all patients were administered the mini-mental state examination, -item geriatric depression scale, positive and negative affect schedule, generalized anxiety disorder , illness per- ception questionnaire, and numeric pain rating scale. intra- and inter- group data analysis was performed before and after treatment. over the course of weeks, patients participated in individual -min sessions. an observational methodology was developed to record verbal and non-verbal interactions between the elderly, the dog, and the dog handler. results: a large effect size and a statistically significant decrease in -item geriatric depression scale scores were identified in the treatment group. no significant differences were detected in the generalized anxiety disorder , positive and negative affect schedule, and numeric pain rating scale. however, the positive and negative affect schedule and the numeric pain rating scale showed a moderate decrease. the illness perception questionnaire’s timeline (acute/chronic) and treatment control subscales showed a clinically relevant, large effect size. conclusions: dog-assisted therapy has proved to be effective in reducing symptoms of depression in institutionalized elderly. the increase in verbal interactions with the handlers throughout the study suggests the dog acts as a facilitator of social interaction, eliciting positive emotional responses. dog-assisted therapy shows promising results in the perception of illness timeline and treatment control, indicating potential enhancement of the sense of treatment-related empowerment. however, further study is required. introduction major depression and clinically significant depressive symptoms represent a consistently corroborated clin- ical reality among elderly in long-term care as observed by thakur and blazer in a systematic litera- ture review. nonetheless, such clinical conditions tend to go undetected because of co-morbidities such as cognitive functional impairment; multiple © japanese psychogeriatric society doi: . /psyg. psychogeriatrics ; : – https://orcid.org/ - - - http://crossmark.crossref.org/dialog/?doi= . % fpsyg. &domain=pdf&date_stamp= - - medical conditions, often coupled with physical pain, act as inter-related variables that increase functional impairment. non-pharmacological interventions, such as music therapy, have proved to be effective complementary modalities in reducing depression and delaying the deterioration of cognitive functions. in contrast, despite receiving increasing attention in the last few years as reflected in the research and international lit- erature, dog-assisted therapy (dat) for the elderly still shows mixed results with regard to be an effec- tive treatment of depression and anxiety. however, dat has been shown to improve social interactions in the patient population according to limited studies of insufficient methodological quality. , it should be noted that promising data on the cor- relation between animal-assisted therapy (aat) and physical well-being of patients have been observed, particularly in relation to cardiovascular disorders. however, the literature has paid less attention to the study of dat’s effects on mood disorders and illness perception in institutionalized elderly populations, despite the biopsychosocial implications for patients in long-term care facilities. popularly referred to as ‘pet therapy’, this kind of clinical intervention has played an important role in strengthening the therapeutic alliance between patient and treater. it also activates cognitive circuits and communication channels, eliciting thoughts and memory patterns that tend to remain silent, unex- plored, and inhibited. as observed by moretti et al., the ‘frequent co- occurrence of cognitive and mood disorders, psy- chotic and anxiety symptoms make elderly persons especially suitable for treatment based on affective and emotional motivations and psychological stimulations’. a study by stasi et al. regarding dat showed that patients included in the treatment group had decreased depressive symptoms and blood pressure variables. in a report by kawamura et al., aat cor- related with improvements in mental and emotional functions, steadily increasing patients’ emotional well-being. conversely, phelps et al. indicated that dog visits did not significantly improve depression scores, mood, or social interactions in their sample. notably, in , the italian ministry of health determined that dat is a clinical intervention directed at the ‘treatment of disorders of neuro-psychomotor cognitive, emotional and relational spheres’ and issued new norms and regulations for its implemen- tation. dat requires a medical prescription and is entirely patient-centred. according to the current leg- islation, dat must be carried out in a manner consis- tent with evidence-based criteria and requires a clinically stringent treatment plan, a multidisciplinary team, quantifiable objectives, and verification of achieved results. the dog acts as a catalyst, facilitator, and motiva- tor of social attention in the intervention. the inter- vention depends on the relationships forged among the patient, the clinician, the dog, and the dog han- dler. the latter has the fundamental task of identify- ing which dog is best suited to the patient based on morphological and behavioural characteristics. it is also the dog handler’s job to determine the most suitable methods for the patient to interact with the dog, ‘translating’ both in an ethological and anthro- pomorphic way what the dog wants to communicate to the patient and vice versa. in light of the mixed findings on dat, this present study aimed to investigate its effects on mood, affect, and illness perception. the study was con- ducted in compliance with the substantial changes introduced by the italian ministry of health on the implementation of aat in clinical settings. our main objectives were to identify whether the presence of the dog effectively elicited noteworthy changes in the psychopathological framework, to determine in which specific dimensions of depressive and anxiety disor- ders these changes occurred, and to assess patients’ sense of empowerment and control over their per- ceived sense of illness and their spontaneous verbal and non-verbal communication. methods study population this study was conducted in a national health service-accredited long-term care facility for the elderly in northern italy from march to september . the study involved two fully ran- domized groups from this facility: a treatment group of subjects and a control group of subjects. patients were selected from the general patient population subject to the following inclusion criteria: • age: – years • institutionalized for at least months c. ambrosi et al. © japanese psychogeriatric society • a score of or higher on the -item geriatric depression scale (gds- ) • a score of or higher on the mini-mental state examination • willingness to interact with the dog and absence of animal allergies. the main exclusion criterion was being unable to interact with the clinical team because of multisen- sory impairment. locomotor disability was not an exclusion factor: single or double amputees were not excluded. existing records were examined by the facility’s clinical team to identify which patients met the inclu- sion criteria. fifty-three patients met the mini-mental state examination threshold, and of these, met the gds- threshold. three were excluded because they refused to participate in any type of activity or leave the unit, and two more were excluded because their clinical condition had severely deteriorated. this left subjects to participate in the study. seventeen subjects were randomly assigned (by drawing their names written on pieces of paper from a bowl) to the treatment group, leaving sub- jects in the control group. one member of the control group died during the study so that person’s assess- ments were excluded. there was no statistically significant difference in the ages of the participants in the treatment and con- trol groups (median: vs years), and there was no statistically significant difference between the two groups on any of the pretreatment assessments. informed consent was obtained from the patients or their legal guardians according to italian law. patients’ right to privacy was preserved, and patient anonymity was guaranteed so that none of the partic- ipants would be identifiable to third parties. the study was approved by the local ethical committee, and it conforms to the declaration of helsinki as revised in . the consort guidelines and checklist were followed. the study started with a -hour training session on aat for the clinical staff who participated in the research project; they were an integral part of the multidisciplinary team conducting the study. the staff were trained on the foundations of aat according to the new italian ministerial guidelines and on the experimental design of this study. the study involved two professional dog handlers from a fully registered non-profit pet therapy organization, a veterinary surgeon, a clinical psychol- ogist, and six dogs (five golden retrievers and one flat-coated retriever). the facility’s team comprised a geriatrician, a professional nurse, a professional reha- bilitation therapist, and a clinical supervisor. dogs were professionally trained and had passed certification aptitude tests for therapy dogs. all cri- teria in the italian ministry of health’s guidelines for animal-assisted interventions and animal welfare were satisfied. assessments at baseline, assessment tests were administered to all the participants in the study before the dat began. the same set of tests was administered to all the participants after they completed weeks of treatments. baseline results were compared with post-treatment results, and the results of the treat- ment group were compared with those of the control group. to assess baseline depression, mood, affect, and illness perception, patients completed the gds- , generalized anxiety disorder (gad- ), positive and negative affect schedule (panas), and illness perception questionnaire-revised (ipq-r). they also filled out a satisfaction questionnaire and numeric pain rating scale (nprs). the nprs asks respondents to rate their level of pain from to , with indicating no pain, – slight pain, – moderate pain, and – severe pain. the battery of tests included the ipq-r, a quan- titative measure of five components of illness repre- sentation according to leventhal’s self-regulatory model. the ipq-r now also includes subscales assessing cyclical timeline perceptions, illness coher- ence, and emotional representations. while illness perceptions have previously been found to correlate with mood, functional adaptation, and compliance to treatment, the ipq-r components show that ‘beliefs in treatment and personal control and a sense of illness coherence [are] inversely related to pes- simistic beliefs about the timeline and consequences of the illness as well as negative emotional representa- tions’. pessimism may result from factors that interfere with therapy in the elderly patient population, leading to poor treatment adherence. our study investigated how dat could impact the ipq-r components and whether it represented a via- ble and effective form of treatment for the patients. dat for institutionalized elderly © japanese psychogeriatric society dat dat sessions took place once a week for weeks. each patient in the treatment group participated in one -min session each week. each dat session involved one patient, one dog, one dog handler, and one observer (trained health volunteers from the civil ser- vice). patients in the control group did not participate in these sessions nor did they participate in any partic- ular substitute activity. patients in both groups contin- ued with their usual care, including pharmacological treatments and voluntary participation in social activi- ties. the dog, dog handler, and observer rotated each week. the objective was to reduce the confounding effect of a specific dog, dog handler, or observer. social interaction focused on verbal and non- verbal cues towards the dog or the dog handler dur- ing the dat. verbal interaction with the dog was defined as the patient speaking with the dog or emit- ting sounds or vocalizations towards the dog. non- verbal interaction with the dog was defined as the patient petting or stroking the dog or giving or throw- ing the dog a bit of food or a toy (e.g. a ball, rope). verbal interaction with the dog handler was defined as the patient making a comment or posing a ques- tion to the dog handler. non-verbal interaction was defined as the patient tapping, touching, or carrying out an act directed at the dog handler. at two-minute intervals, the observer would record an interaction as being in one of these four categories of interaction if one or more interactions of that type occurred. then the total number of interactions during each dat ses- sion in each category was calculated. the resulting figure is the percentage obtained by dividing the total number of interactions by the number of two-minute intervals in the session. after sessions , and , participants were asked to complete a short questionnaire about their emo- tional state using a -point likert scale and their desire to see the dog in the next session of dat. statistical analyses statistical analysis was performed using real statis- tics release . (http://www.real-statistics.com). our principal investigation was to see whether there was a significant difference (based on p-value) and/or important difference (based on effect size) between gds- , panas, gad- , ipq-r, and nprs scores before and after the weeks of dat. because some of the respondents gave a range of responses on the nprs, this was analyzed separately. also, because of the large number of ipq-r subscales (eight), these were analyzed separately. hotelling’s paired t-square test was used to deter- mine whether there was a significant difference between the scores after dat, and then multiple paired t-tests were performed using a bonferroni cor- rection factor as a follow-up. a significance level of α = . was employed (subject to the bonferroni experiment-wise error correction based on at most + + = tests). cohen’s dav (based on a pooled variance equal to the average of the pre- and post-treatment variances) was used to measure effect size. cohen’s dz (based on the standard devia- tion of the differences between the pre- and post- treatment scores) was also reported. because of the limitations in previous dat studies, we were not able to evaluate the effect size based on previous studies. as such, we used the usual rough guidelines that d = . represents a small effect, . a medium- sized effect, and . a large effect. confidence intervals of the effect size were calculated by using a noncentral t distribution approach. statistical power analysis was performed based on the paired t-test. assessment scores between the treatment and control groups before dat were compared to ensure that the separation of patients into the two groups was unbiased. no significant differences were found based on the independent sample versions of hotell- ing’s t-square test and t-tests. the mean age of the treatment group participants was . years, and the median was years. the mean age of the control group participants was . years, and the median was years. this differ- ence was not statistically significant based on the mann–whitney test (because the data were not normally distributed): u = , p = . . except for two men in the treatment group, all the participants were women. the independent sample versions of hotelling’s t- square test and t-tests were also employed to deter- mine whether there was a significant difference between the treatment and control groups regarding the change in the test scores over the treatment period. cohen’s effect size d for independent samples as well as effect size confidence intervals (again based on a noncentral t distribution approach) were also obtained. social interactions are represented in figures - . c. ambrosi et al. © japanese psychogeriatric society http://www.real-statistics.com results effectiveness of dat in the treatment group gds- , panas, and gad- the paired sample hotelling’s t-square test showed that there was a significant difference between the scores before and after dat in the treatment group. the differences occurred across six scales—one gds- scale, one gad- scale, and four panas scales (t = . , f , = . , p = . ). the follow-up analysis demonstrated that the significant difference was attributable to the gds- test (table ). the scores on the gds- test decreased by an average of . % after dat, indicating a significant decrease in depression (t = . , p = . , dz = . , dav = . ). even with a bonferroni correc- tion that brought alpha down to . / = . , this result was still highly significant. the decrease in gds- score was very large, with an effect size much bigger than . . it should be noted that for a sample of size , a paired t-test can detect an effect size of . (or higher) with power of % for α = . (or an effect size of . with power of % for α = . ). this is sufficient for the gds- result. of the items on the gds- scale, all but items , , and improved in the treatment group. the per- centage change in scores for all items is shown in table . panas state negative affects showed a . % improvement, a medium-sized effect (dz = . , dav = . ), and p = . , which, although smaller than α = . , is not significant after a bonferroni or similar correction is taken into account. nprs all patients rated their pain on a scale of to , with representing the most severe pain. three of the patients in the treatment group gave a range of pain values ( – or – ); the mean was used for these patients. pain levels went down by . %, which was small and not significant (p = . , d = . ). because the table improvements in gds- , panas, and gad- in the treatment group gds- state pa state na trait pa trait na gad- sample size min increase − − − − − − max increase % increase − . % . % − . % − . % − . % − . % mean increase − . . − . − . − . − . sd . . . . . . p-value . . . . . . lower % ci − . − . − . − . − . − . upper % ci − . . − . . . . cohen’s dz − . . − . − . − . − . hedges’ gz − . . − . − . − . − . lower dz − . − . − . − . − . − . upper dz − . . − . . . . cohen’s dav − . . − . − . − . − . hedges’ gav − . . − . − . − . − . lower dav − . − . − . − . − . − . upper dav − . . − . . . . all measurements reflect post-treatment scores minus pre-treatment scores. % ci is the % confidence interval of the mean increase. dz is cohen’s effect size based on the standard deviation of score differences. dav is cohen’s effect size based on the average of the standard deviations pre- and post-treatment. hedges’ d is a more unbiased statistic corresponding to cohen’s d. tests are based on paired t-tests. gad- , generalized anxiety disorder ; gds, -item geriatric depression scale; panas, positive and negative affect schedule; na, negative attributes; pa, positive attributes. table changes by item on the -item geriatric depression scale in the treatment group pre-treatment post-treatment % change q . . . % q . . − . % q . . . % q . . . % q . . − . % q . . . % q . . . % q . . . % q . . − . % q . . . % q . . . % q . . . % q . . . % q . . . % q . . . % total . . . % all scores are the mean. dat for institutionalized elderly © japanese psychogeriatric society normality assumption was violated, the wilcoxon signed-rank test was used instead of a paired t-test. ipq-r the paired sample hotelling’s t-square test showed there was no significant difference between the scores on the eight subscales before and after ther- apy in the treatment group (t = . , f , = . , p = . ). based on this result, no follow-up was necessary, but it was performed anyway to get fur- ther information (table ). the mean of subscale decreased by . %, a large effect size (dz = . , dav = . ), but it was not significant when a bonferroni correction was taken into account (p = . ). satisfaction the patients in the treatment group were asked to rate their satisfaction with dat on a scale of – after weeks , , and . the mean rating was . , with all rating being or . comparison between the treatment and control groups comparison before dat there was no significant difference between the treatment and control groups on any of the tests. a series of two-sample t-tests for scales were performed as well as a mann–whitney test for the nprs (because the normality assumption was violated). none of the p-values for these tests was less than . . in fact, none was lower than . , except for ipq-r scale (p = . ). these results gave us more confidence that patients were indeed randomly assigned to the treatment and control groups. comparisons of the changes in each scale the two-sample hotelling’s t-square test showed there was no significant difference in the net scores between the treatment and control groups on the gds- , the gad- , and the four panas scales (t = . , f , . = . , p = . ). based on this result, no follow-up was necessary, but it was per- formed anyway using multiple two-sample t-tests to get further information (table ). we also added nprs to this table (using the mann–whitney test because the normality assumption was violated). the gds- result was significant and showed a large effect size (mean � sd: − . � . , t . = . , p = . , d = . , power = %). this demonstrated a high degree of confidence that the treatment group had a much greater improve- ment on the gds- than the control group. similarly, the two-sample hotelling’s t-square test showed there was no significant difference in the net scores between the treatment and control groups on the eight scales of the ipq-r test (t = . , f , . = . , p = . ). table improvement in the illness perception questionnaire-revised in the treatment group scale scale scale scale scale scale scale scale sample size min increase − − − − − − − − max increase % increase . % − . % − . % − . % . % . % − . % − . % mean increase . − . − . − . . . − . − . sd . . . . . . . . p-value . . . . . . . . lower % ci − . − . − . − . − . − . − . − . upper % ci . . . − . . . . . cohen’s dz . − . − . − . . . − . − . hedges’ gz . − . − . − . . . − . − . lower dz − . − . − . − . − . − . − . − . upper dz . . . − . . . . . cohen’s dav . − . − . − . . . − . − . hedges’ gav . − . − . − . . . − . − . lower dav − . − . − . − . − . − . − . − . upper dav . . . − . . . . . all measurements reflect post-treatment score minus pre-treatment score. % ci is the % confidence interval of the mean increase. dz is cohen’s effect size based on the standard deviation of score differences. dav is cohen’s effect size based on the average of the standard deviations pre- and post-treatment. tests are based on paired t-tests. c. ambrosi et al. © japanese psychogeriatric society follow-up testing using multiple t-tests was per- formed to get further information (table ). although there were no significant differences between the treatment and control groups (based on a bonferroni correction), the results for subscales (timeline: acute/chronic) and (treatment control) are interesting and worth further investigating. the scores for subscale in the treatment group decreased, whereas those for the control group increased, with a difference of . , p = . and d = . , denoting a large effect. the scores for subscale in the treatment group increased, but those for the control group decreased, with a differ- ence of . , p = . and d = . , denoting a large effect. analysis: social interaction social interaction was measured by participants’ ver- bal and non-verbal interactions with the dog and the dog handler during a dat session. the highest level of participation was verbal with the handler (mean: . %), followed by . % for non-verbal with the table comparison of gds- , panas, gad , and nprs between treatment and control groups gds- state pa state na trait pa trait na gad- nprs % increase treatment group − . % . % − . % − . % − . % − . % − . % % increase control group − . % . % − . % . % − . % − . % − . % size of treatment group (n) size of control group (n) treatment mean − . . − . − . − . − . − . control mean − . . − . − . − . − . − . mean difference − . . . − . . . − . treatment sd . . . . . . . control sd . . . . . . . pooled sd . . . . . . . p-value . . . . . . . lower mean difference − . − . − . − . − . − . — upper mean difference − . . . . . . — cohen’s d − . . . − . . . − . hedges’ g − . . . − . . . − . lower d − . − . − . − . − . − . upper d − . . . . . . all measurements reflect change in treatment scores versus change in control scores. % confidence intervals for the mean difference and cohen’s d (two inde- pendent samples). hedges’ d is an unbiased statistic corresponding to cohen’s d. all tests are based on two independent sample t-tests, except the nprs, which used the mann–whitney test. the effect size for nprs is r = − . (based on the mann–whitney test). gad- , generalized anxiety disorder ; gds, -item geriatric depression scale; nprs, numeric pain rating scale; panas, positive and negative affect schedule; na, negative attributes; pa, positive attributes. table comparison of the illness perception questionnaire-revised between the treatment and control groups scale scale scale scale scale scale scale scale % increase treatment group . % − . % − . % − . % . % . % − . % − . % % increase control group . % . % − . % − . % − . % . % − . % − . % size of treatment group (n) size of control group (n) treatment mean . − . − . − . . . − . − . control mean . . − . − . − . . − . − . mean difference . − . . . . − . . . treatment sd . . . . . . . . control sd . . . . . . . . pooled sd . . . . . . . . p-value . . . . . . . . lower mean difference ci − . − . − . − . − . − . − . − . upper mean difference ci . − . . . . . . . cohen’s d . − . . . . − . . . hedges g . − . . . . − . . . lower d ci − . − . − . − . − . − . − . − . upper d ci . − . . . . . . . all measurements reflect change in treatment scores versus change in control scores. ci represents the % confidence intervals for the mean difference and cohen’s d (two independent samples). hedges’ d is an unbiased statistic corresponding to cohen’s d. tests are based on two independent sample t-tests. dat for institutionalized elderly © japanese psychogeriatric society dog, . % verbal with the dog, and . % for non- verbal with the handler (fig. ). in general, participation levels were highest at the beginning of the session and, except for verbal inter- actions with the handler, rose again at the end of the session (fig. ). figure shows how the percentage of interactions varied by week. in general, these increased for verbal interactions with the handler and decreased for the other three categories. the frequency of interactions showed little variation with each dog or handler, although many of the participants did favour one dog over another. discussion the purpose of our study was to assess the effec- tiveness of dat in reducing depression and anxiety figure interactions at -min intervals. hand, dog handler; non-verb, non- verbal interactions; verb, verbal interactions. figure interactions at -min intervals by category. in each of the four categories, there is a reduction in interaction, often with a slight rise in the last min. c. ambrosi et al. © japanese psychogeriatric society and to investigate the impact of such a therapeutic approach on affect and illness perception through a randomized controlled study. our findings corrobo- rate the notion that animals help patients shift the focus off their symptoms of distress and, through interactions with the animal, elicit a sense of serenity and tranquillity, positively affecting their mood and thereby enhancing social interaction. the participants in this study had an increasing willingness to engage in dat as well as positive emo- tional responses towards their encounters with the dogs, as overwhelmingly reported in the satisfaction questionnaires. these responses are indicative of the achievement of a major indirect objective: a consis- tent level of participation and engagement. dat seemed to counteract signs of social withdrawal and the lack of motivation often observed in depressed institutionalized elderly. based on a significant and very large decline in gds- scores after treatment, our results demon- strate the effectiveness of dat in reducing depres- sive symptoms. although changes in anxiety and positive and negative affect were not significant, they should be investigated further to explore possible correlations between the elicitation and unearthing of emotional and memory patterns, which may remain dormant and unexplored, and the multidimensional compounded construct between alexithymia, anxiety, and ageing. the large effect size on subscales and of the ipq-r suggests a considerable shift in the perception of treatment effectiveness. this shift may be general- izable with regard to further treatment adherence and a stronger sense of empowerment over the future of one’s disorder, which deserves further investigation. the reduction in the perception of physical pain, although not sizeable, also merits further study in light of the correlation between pain and depression in institutionalized elderly. there are some potential limitations to the general- izability of these findings. the samples were selected from a single long-term nursing care facility. how- ever, the facility is a national health service- accredited clinical institution; unlike in privately run facilities, its patients come from a wide sociodemo- graphic and clinical population, suggesting that the findings have broad relevance. additionally, the mini- mental state examination cut-off score was , which figure interactions each week by category. note that verbal communication with the handler trends up while communication with the dog trends down. dat for institutionalized elderly © japanese psychogeriatric society means subjects with severe cognitive deterioration in comorbidity with depression were excluded. further study is therefore recommended. the approach used in this study emphasized patients’ active participation in the therapeutic pro- cess. the synergetic relationship among the clinical team promoted cohesiveness and helped facilitate patients’ spontaneous behaviour that emerged during therapy. for example, one patient had a strong pas- sion for photography and was granted permission by the facility to take pictures of the dogs; this became a pivotal aspect of participants’ sense of belonging that occurred spontaneously over time and promoted interactions within the treatment group. psychotherapeutic treatment for institutionalized elderly should aim to help patients gain a sense of time and space continuity, as well as identity coher- ence, after the ‘rupture’ from the individual’s ordinary reality. the institution can and should represent a haven where multiple clinical and relational aspects of a patient’s life are taken into account and addressed. this can help to promote a sense of psy- chological well-being, as can interventions that stim- ulate patient interactions and bonds, which may be fostered by the quiet, sensitive, and thought- provoking presence of a dog. acknowledgments we are thankful to all the staff of the fondazione santa chiara onlus, centro multiservizi per la popo- lazione anziana (lodi, italy), for their support and kindness and to dr chiara maiorani, phd for her valu- able clinical contribution. we are also grateful to dia- mante blu kennel, operated by dolores genco, for supplying highly trained and sensitive therapy dogs that made this study possible. references thakur m, blazer dg. depression in long-term care. j am med dir assoc ; : – . mossey jm, gallagher rm, tirumalasetti f. the effects of pain and depression on physical functioning in elderly residents of a continuing care retirement community. pain med ; : – . chu h, yang cy, lin y et al. the impact of group music ther- apy on depression and cognition in elderly persons with dementia: a randomized controlled study. biol res nurs ; : – . banks m, banks w. the effects of animal-assisted therapy on loneliness in an elderly population in long-term care facilities. j gerontol ; : – . cherniack e, cherniack a. the benefits of pets and animal- assisted therapy to the health of older individuals. curr geron- tol geriatr res : . cole km, gawlinski a, steers n, koylerman j. animal-assisted therapy in patients hospitalized with heart failure. am j crit care ; : – . maiorani c, cesa-bianchi g, crostini c. un’esperienza di “dog assisted therapy” in rsa. j gerontol geriatr ; : – . moretti f, de ronchi d, bernabei v et al. pet therapy in elderly patients with mental illness. psychogeriatrics ; : – . stasi m, amati d, costa c et al. pet therapy: a trial for institu- tionalized frail elderly patients. arch gerontol geriatr ; : – . kawamura n, niiyama m, niiyama h. long term evaluation of animal-assisted therapy for institutionalized elderly people: a preliminary result. psychogeriatrics ; : – . phelps k, miltenberger g et al. an investigation of the effects of dog visits on depression, mood, and social interaction in elderly individuals living in a nursing home. behav interventions ; : – . regine lombardia. bollettino ufficiale serie ordinaria n. , , interventi assistiti con gli animali (i.a.a.). linee guida nazionali. d.g.r. -nx/ : . sheikh ja, yesavage ja. geriatric depression scale (gds): recent evidence and development of a shorter version. in: brink tl, ed. clinical gerontology: a guide to assessment and intervention. new york: haworth press, . folstein mf, folstein se, mchugh pr. ‘mini mental state’. a practical method for grading the cognitive state of patients for the clinician. j psychiatr res ; : – . spitzer rl, kroenke k, williams jb et al. a brief measure for assessing generalized anxiety disorder: the gad- . arch intern med ; : – . watson d, clark la, tellegen a. development and validation of brief measures of positive and negative affect: the panas scales. j pers soc psychol ; : – . moss-morris r, weinman j, petrie k, horne r, cameron dl, buick d. the revised illness perception questionnaire (ipq-r). psychol health ; : – . williamson a, hoggart b. a review of three commonly used pain rating scales. j clin nurs ; : – . fortune dg, richards hl, main cj, griffiths ce. pathological worrying, illness perception and disease severity in patients with psoriasis. br j health psychol ; : – . scharloo m, kaptein aa, weinman ja, willems ln, rooijmans hg. physical and psychological correlates of func- tioning in patients with chronic obstructive pulmonary disease. j asthma ; : – . weinman j, petrie kj, sharpe n, walker s. causal attribution in patients and spouses following first time myocardial infarc- tion and subsequent lifestyle changes. br j health psychol ; : – . creagan e. pet prescription: not just puppy love. j active aging ; : . cornwell ey, waite lj. social disconnectedness, perceived isolation and health among older adults. j health soc behav ; : – . onor ml, trevisiol m, spano m, aguglia e, paradiso s. alexthy- mia and ageing. j nerv ment dis ; : – . c. ambrosi et al. © japanese psychogeriatric society 	 randomized controlled study on the effectiveness of animal-assisted therapy on depression, anxiety, and illness perception... 	introduction 	methods 	study population 	assessments 	dat 	statistical analyses 	results 	effectiveness of dat in the treatment group 	gds- , panas, and gad- 	nprs 	ipq-r 	satisfaction 	comparison between the treatment and control groups 	comparison before dat 	comparisons of the changes in each scale 	analysis: social interaction 	discussion 	acknowledgments 	references wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ the scent of emotions: a systematic review of human intra‐ and interspecific chemical communication of emotions brain and behavior. ; :e .	 		 	 | 	 of https://doi.org/ . /brb . wileyonlinelibrary.com/journal/brb   |   i n t r o d u c t i o n since the neuroanatomical studies of paul broca in the th century, the role of the olfactory system has been considered of minor rel- evance in humans. it is claimed that primates' evolutions have been associated with an important development of vision to the detriment of the olfaction (liebetanz, nitsche, ichael, fromm, & reyher, ). the primates olfactory structures have declined over their evolu- tion: structures as the accessory olfactory system (aos), including the vomeronasal organ (vno) and accessory olfactory bulb, are re- duced if compared to the main olfactory system (mos) (heritage, received:	 	august	   | revised:	 	january	   | accepted:	 	february	 doi: . /brb . r e v i e w the scent of emotions: a systematic review of human intra- and interspecific chemical communication of emotions elisa calvi  | umberto quassolo  | massimiliano massaia  | anna scandurra  | biagio d'aniello  | patrizia d'amelio , this is an open access article under the terms of the creative commons attribution license, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. © the authors. brain and behavior published by wiley periodicals, inc. the peer review history for this article is available at https://publo ns.com/publo n/ . /brb . department of medical sciences, university of turin, turin, italy department of biology, university of naples “federico ii”, naples, italy department of medicine, geriatric medicine and geriatric rehabilitation, chuv, lausanne university hospital, lausanne, switzerland correspondence patrizia d'amelio, department of medical sciences, university of turin, corso dogliotti , turin , italy. email: patrizia.damelio@unito.it abstract objective: the sense of olfaction has been considered of minor importance in human communication. in recent years, evidence has emerged that humans might be influ- enced by unconscious messages sent through chemosignals in body odors. data con- cerning the ability of humans to recognize fear, maybe related to the evolutionary role of these emotions in the fight-or-flight reactions, are well known. methods: to further understand the role of emotional chemosignals in mediating communication in humans and its influence on animal behaviors, we conducted a systematic literature review. results: chemosignals derived from axillary odors collected under a variety of emo- tional stimuli and sad tears in humans affect receivers' social interactions, danger detection and risk-taking behavior, social aspects of eating, and performance under stressing conditions. in addition, beyond the fight-or-flight response, even the body odors of happiness can be perceived by others. furthermore, human chemosignals can influence behaviors and stressful responses in animals, particularly dogs and horses, which may partially explain their special relationship with humans. conclusion: our review highlights the importance of chemosignaling in human intra- and interspecific interactions and suggests the need for further investigations, both in physiological conditions and in patients with psychiatric or neurodegenerative disorders. k e y w o r d s behavior, body odors, chemosignals, neuroendocrinology, psychology www.wileyonlinelibrary.com/journal/brb https://orcid.org/ - - - https://orcid.org/ - - - mailto: https://orcid.org/ - - - http://creativecommons.org/licenses/by/ . / https://publons.com/publon/ . /brb . mailto:patrizia.damelio@unito.it of   |     calvi et al. ). this observation drives scientific efforts toward the study of the other senses, leaving the olfactory function largely unexplored. nevertheless, it is well known that primates maintain a variety of se- baceous and apocrine skin glands (montagna & yun, ) as well as an excellent olfactory sensibility expressed as ability in discriminat- ing odorants involved in reproductive signaling, even if compared to dogs and rats (laska, ). in addition, a number of studies showed in primates the involvement of olfaction, not only in scent marking (heymann, ), but also in social and sexual behaviors (kappeler, ), the communication of reproductive status or the pair-bonding (snowdon, ziegler, schultz-darken, & ferris, ). olfactory receptors (ors) are -transmembrane receptors ac- tivated by a g protein-dependent pathway (buck & axel, ). almost intact or genes have been identified in humans, a small number in comparison with dogs and rodents. once odorant mol- ecules bind to ors, the signal transduction is mediated by the cilia of olfactory sensory neurons (osns) through the increase in intra- cellular cyclic adenosine monophosphate leading to neuron depolar- ization. osns converge onto glomerular structures in the olfactory bulb from which mitral cells project directly to the primary cortex, without thalamic relay, thus distinguishing the sense of olfaction from all the other human senses (menini, ). nevertheless, in re- cent years the involvement of the medio-dorsal nucleus of the thala- mus (mdt) in processing olfactory stimuli has been postulated (price and powell, s.d.) as the mdt receives inputs from all the primary olfactory areas including the piriform cortex and some secondary olfactory areas, potentially involved in olfactory stimuli processing including odor identification, discrimination, attention, and learning (courtiol & wilson, ). the detection of pheromones in humans was thought to be completely segregated by the mos and mediated by the vno, although its functional involvement and presence is still questioned in humans (meredith, ). the vno is a tubular struc- ture situated in the nasal septum, part of the accessory olfactory system and specialized in detecting pheromonal involatile signals through direct physical contact (bhatnagar & smith, ). the ac- cessory olfactory bulb, receiving inputs from vomeronasal sensory neurons axons, projects mainly to the medial and posteromedial cor- tical amygdala, and then to the hypothalamus, controlling reproduc- tive and social behavior (von campenhausen & mori, ). nevertheless, the aos and mos functions are more integrated than previously thought, as both structures can respond to the same chemical stimuli and both sensory systems send projections to brain areas that are involved in mediating pheromonal responses (brennan & zufall, ). olfactory communication is of pivotal importance in animals' so- cial interaction. body odors and volatile compounds in urine, feces, or blood have been demonstrated to be a warning signal to prey species (schauber, ), activating many autonomic, endocrine, and behavioral responses (ulrich-lai & herman, ). for example, mice smelling a mixture of pyrazine from the wolves' urine increased both vigilance behaviors and activity of the neurons in the aos; the same substances suppress the approach of deer to feeding areas while eliciting fear responses (osada, miyazono, & kashiwayanagi, ). some authors hypothesized that predator odors could be de- tected by specific olfactory structure as mos-mediating responses to volatile cues (firestein, ) and aos for chemical cues or pher- omones (breer, fleischer, & strotmann, ). specific brain areas as amygdala and hippocampus play a key role in activating autonomic and endocrinological responses (e.g., hypothalamic–pituitary–adre- nal axis). amygdala is also involved in the unconditioned fear behav- ior related to predator odor and in the retrieval of contextual fear memory associated with prior predator odor experiences. it is widely recognized that humans' five senses work together in providing information and that signals received from one sense can modulate the information received from another in a multisensory way (stein & meredith, ). the relationship between visual, audi- tory, and somatosensory inputs, the so-called “physical senses,” has been largely studied (alais, newell, & mamassian, ). with re- gard to olfaction, we know that interaction with taste is fundamental in appetite modulation and perceptions of the foods (mccrickerd & forde, ). moreover, visual perception can affect olfactory iden- tification (i.e., in white versus red wine identification by expert tast- ers as demonstrated by the study of morrot, brochet, & dubourdieu ( ) and vice versa, modulating food-images attractiveness, human faces pleasantness (cook et al., ; luisa demattè, sanabria, & spence, ) or facial emotion recognition (seubert, gregory, chamberland, dessirier, & lundström, ). summations • humans are able to sense and react to intraspecific chemosignals enclosed in body odors, but the exact composition of chemosignals is unknown and data on transmission of “positive emotions” trough body odors are lacking • as data on the role of chemosignaling in demented and psychiatric patients are missing, there is high poten- tial for further studies on emotional chemosignaling in humans • dogs and horses are influenced by human emotional chemosignals limitations • our search strategy was restricted to english-language publications,	published	between	january	 	and	april	 , inaccessible or inadequately indexed reports were not taken into consideration. • there is a considerable heterogeneity in the method- ology, quality, populations, and outcomes between studies • the number of studies providing data on chemosignaling communication between animals and humans is small      |   of calvi et al. the sense of olfaction is unique in projecting directly to the amygdala and the orbitofrontal cortex, thus providing a close con- nection with the limbic system, expressly tasked with emotion pro- cessing	 (hackländer,	 janssen,	 &	 bermeitinger,	 ;	 krusemark,	 novak, gitelman, & li, ). a number of behavioral studies demonstrated that olfactory cues makes memories more emotional and evocative if compared to other sensory stimuli (herz, ; herz, eliassen, beland, & souza, ). moreover, functional magnetic resonance imaging (fmri) studies demonstrated that memories elicited by odor perception ac- tivate specific neuroanatomical area if compared to other sensory stimuli (herz et al., ). olfaction is also involved in odor disease avoidance: the inflam- matory process leads to the release of volatile molecules in urine and feces that are recognized by conspecifics, providing information about the health status of the odor donors. the detection of sick in- dividuals via odor cues is well known in animals and helps to avoid disease transmission inhibiting social interactions (arakawa, cruz, & deak, ). in humans, disease-specific (e.g., infectious or metabolic disease) volatile organic compounds have been identified (shirasu & touhara, ). considering the dramatic role of infections in human evolution, the ability to detect olfactory cues indicating sickness could represent an adaptive survival mechanism. some experimen- tal studies demonstrated an unconscious ability of healthy subjects to recognize and find repulsive body odor obtained from “sick” sub- jects (olsson et al., ); smelling these body odors activate the odor networks as shown by fmri (regenbogen et al., ). nevertheless, many questions remain still open and literature is lacking about the neural processes underlying the ability of humans to detect sickness. in the last decades, it has become clear that also humans have excellent olfactory abilities (mcgann, ). the exceptional abil- ity of humans to discriminate a big number of odorants (bushdid, magnasco, vosshall, & keller, ) despite the limited number of functional ors depends on a combinatorial receptor coding scheme (malnic, hirono, sato, & buck, ). scientific interest has been centered on the role of olfactory communication in shaping social in- teractions through molecules produced in specific emotional states (lübke & pause, ). such molecules mediating interindividual communicative exchanges were firstly classified as pheromones and are now named chemosignals (doty, ). the question if and how humans may react to chemosignals is, indeed, challenging and not completely answered by experimental studies. data on intraspecific communication between different species of animals (brennan, ; wyatt, , a, b) con- firm the common observation that animals communicate with each other through body odors. more surprisingly, some experimental studies suggest that also humans may be influenced in their interper- sonal relationships and behaviors by the unconscious messages sent through chemosignals enclosed in body odors (de groot, smeets, kaldewaij, duijndam, & semin, ). chemosignals are molecules excreted by animals as answer to physical distress and emotions and are able to elicit behavior or physiological responses from other animals (petrulis, ). despite this definition, until now, there is no clear evidence of which mol- ecules are able to vehicle emotions, several molecules have been indicated as chemosignals, and these molecules have to be differ- entiated from odors and volatile substances (table and ). among these molecules, the testosterone metabolite androstadienone has been indicated as a putative chemosignal and suggested to be able to communicate dominance and social threat by several studies (banner, frumin, & shamay-tsoory, ; banner & shamay-tsoory, ; frey, weyers, pauli, & mühlberger, ; hornung, kogler, wolpert, freiherr, & derntl, ; zhou et al., ). in recent years, the involvement of chemosignals on species-spe- cific communication of stable features such as age, gender, kin rec- ognition, fertility, and reproductive behavior has been extensively studied	(gildersleeve,	haselton,	larson,	&	pillsworth,	 ;	jones,	 hahn, & debruine, ; marazziti et al., ; mitro, gordon, olsson, & lundström, ; pause, b; penn et al., ; weisfeld, czilli, phillips, gall, & lichtman, ). in addition, research on chemosignaling is focusing on the trans- mission of emotional states. preliminary studies investigated the involvement of chemosig- nals in conveying emotional states from “a sender” to “a receiver.” in ,	chen	and	haviland-jones	were	able	to	demonstrate	for	the	 first time that human subjects can recognize the emotion of another human subject by sniffing odors collected by axillary pads (chen & haviland-jones,	 ).	in	the	following	years,	a	number	of	further	 evidences confirmed that human body odors vary according to emo- tional states of the donors and that these changes can be perceived by receivers (pause, a; pause, adolph, prehn-kristensen, & ferstl, ; prehn, ohrt, sojka, ferstl, & pause, ). the majority of research on communication via human body odors has focused on the transmission of the so-called “negative emotions” (i.e., fear, stress or anxiety; de groot & smeets, ), based on the evolutionary significance of potential activation of adrenergic-mediated stress response system. in subsequent stud- ies, similar results have been obtained with “positive emotions” as happiness or sexual arousal (iversen, ptito, møller, & kupers, ; zhou & chen, ; zhou, hou, zhou, & chen, ) showing the complexity of chemosignaling in human's communication. olfactory dysfunction is an early feature of alzheimer disease (ad; doty & hawkes, ; mesholam, moberg, mahr, & doty, ). neurofibrillary tangles early accumulate in the key areas for olfactory function in ad (kovács, cairns, & lantos, ; ohm & braak, ), and neuroimaging studies demonstrate atrophy in the primary olfactory cortex and hippocampus in ad patients (kotecha et al., ; vasavada et al., ). interestingly, impaired ability to identify different odors seems to predict the progression of cognitive decline in subjects with mild cognitive impairment (devanand et al., ). limited evidences suggested that olfactory dysfunction might be useful to differentiate ad from another type of dementia (park, lee, lee, & kim, ). also in parkinson's disease, the olfactory dysfunction plays a key role in the diagnosis, as its evaluation is included in the diagnostic course, in particular in distinguishing parkinson's disease from other parkinsonian syndromes (suchowersky et al., ). in parkinson's disease, olfactory of   |     calvi et al. impairment appears years before the clinical manifestation of the dis- ease, remains stable over time, and affects more than % of patients (doty, ). moreover, in longitudinal studies olfactory impairment can predict the rate of evolution toward dementia (baba et al., ). recent data suggest that humans' chemosignals could also be per- ceived by other species as dogs and horses (d'aniello, semin, alterisio, aria, & scandurra, ; lanata et al., ; siniscalchi, d'ingeo, & quaranta, ). these findings open a new field of investigation, suggesting a deeper interpretation of the relationship between pets and their owners. in particular, they may furnish a completely new interpretation on the effectiveness of pet therapy for cognitive im- paired patients (charry-sánchez, pradilla, & talero-gutiérrez, ; hu,	zhang,	leng,	li,	&	chen,	 ;	majić,	gutzmann,	heinz,	lang,	 & rapp, ; wesenberg, mueller, nestmann, & holthoff-detto, ; yakimicki, edwards, richards, & beck, ), rising the chal- lenging hypothesis that the benefit of pet therapy relies on a deep in- terspecific communication beyond rationality and social conventions. nevertheless, many questions remain unanswered: little is known about the brain areas involved in the recognition of the emo- tions transmitted through chemosignals, as well as the consequences of neurodegenerative or psychiatric pathologies on the ability to rec- ognize the chemical messages. furthermore, whether chemosignals are recognized through the primary olfactory system or through the vno in humans remains controversial (d'aniello, semin, scandurra, & pinelli, ; meredith, ) and the identification of active com- pounds involved in chemosignaling is far from completion. as geria- tricians, we are particularly interested in understanding the different reactions of cognitive impaired patients to their professional and fa- miliar caregivers' chemosignals (rippon et al., ). here, we systematically review the studies on the communica- tion of emotions by chemosignals in humans and between humans and other species. the understanding of emotional communication through chemosignals will increase our understanding of intraspe- cific and interspecific communications.   |   m at e r i a l s a n d m e t h o d s .  | eligibility criteria inclusion criteria were based on the participants, intervention, comparator, outcomes, and study design, the pico model was built as follows: participants: we included studies investigating the effects of hu- man-derived emotional chemosignals on human and animal receivers. interventions: we included only studies analyzing the responses to emotional stimuli derived by body odors collected from a sender under an emotional condition. studies with synthetic substances or hormonal stimuli were excluded. comparator: a control stimulus had to be presented to the re- ceiver and included body odors obtained during exercise or after a neutral stimulus, unused sweat pads, or saline solutions. outcomes: we included studies investigating the ability of an emotional body odor to elicit the same emotion in the sender as compared to a control stimulus. measures could be fmri, facial electromyography (emg), skin conductance response (scr), elec- troencephalography (eeg), cardiac activity or cognitive, affective, behavioral, or perceptual tasks. study design: we included english-language and peer-reviewed studies with no limitations due to study type or publication date. .  | information source this systematic review was performed according to the preferred reporting items for systematic reviews and meta-analyses (prisma)	checklist	from	january	 	to	april	 . the search strategy was conducted to find relevant studies from the medline, embase, cochrane library, and psychinfo databases. t a b l e   differentiation between odors, volatile molecules, and pheromones odor volatile molecule pheromone blend of different moieties released in organic fluids that varies according to species, sex, age, genotype, and endocrine state and/or the property of certain substances, in very small concentrations, to stimulate chemical sense receptors. chemical that has a high vapor pressure at ordinary room temperature. a chemical released by one organism that modulates the behavior or physiology of a second organism of the same species, which ranges from small, volatile molecules, and sulfated steroids to large families of proteins. its principal properties are as follows: • the synthesized molecule/combination of molecules should elicit the same response as the natural stimulus in the bioassay. • it should act in this way at natural concentrations. at high concentrations, spurious results may occur as nonpheromones may stimulate receptors; • for multicomponent pheromones, experiments should demonstrate that all compounds in the combination are necessary and sufficient to elicit the full response; • only this molecule or the proposed combination of molecules elicits the effect (unlike other similar molecules or combinations that the animal would normally encounter); • there should be a credible pathway for the pheromone signal to have evolved by direct or kin selection. in evolutionary terms, to be a signal, both the emission and reception of the pheromone signal should have evolved for a particular function.      |   of calvi et al. a manual search of these articles' reference lists was per- formed to capture additional articles for consideration; this search allowed	us	to	find	one	article	from	kamiloğlu,	smeets,	de	groot,	 and semin ( ). .  | search strategy the search evaluated articles using the search terms: . fear . emotions . happiness . anxiety . stress . disgust . or or or or or . chemosignaling . chemosignals . body odors . scent . chemosensory signals . apocrine sweat . chemosensory . or or or or or or . and .  | study selection two experienced reviewers (ec and uq) identified all studies meet- ing the inclusion criteria to be included for the full review. each re- viewer independently selected studies for inclusion in the review, and discrepancies were resolved by mutual consensus. t a b l e   list of putative chemical messenger molecules relevant for mammals molecule supposed function species and secretion organ reference α-androst- -en- -one reduction of the threshold for pressure-induced lordosis in female pigs domestic pig, male salivary glands melrose, reed, and patterson ( ) male-enriched -(sec-butyl)-dihydrothiazole promotion of estrous synchronization in group-housed females (whitten effect) and acceleration of the onset of puberty in juvenile females (vandenbergh effect) mouse, male urine jemiolo,	harvey,	and	novotny	 ( ) dehydro-exo-brevicomin promotion of estrous synchronization in group-housed females (whitten effect) and acceleration of the onset of puberty in juvenile females (vandenbergh effect) mouse, male urine novotny, ma, wiesler, and zidek ( ) female-enriched , -dimethylpyrazine suppression of female estrous mouse, female urine novotny,	jemiolo,	harvey,	wiesler,	 and marchlewska-koj ( ) -heptanone promotion of female estrous mouse, female urine jemiolo,	andreolini,	xie,	wiesler,	 and novotny ( ) mups (major urinary proteins) acceleration of puberty onset mouse, male urine mucignat-caretta, caretta, and cavaggioni ( ) -methylbut- -enal induction of an innate suckling response in neonates that have not nursed previously rabbit, female milk schaal et al. ( ) dodecyl propionate stimulation of maternal grooming mouse, preputial gland of neonatal rat brouette-lahlou, godinot, and vernet-maury ( ) salivary abp (androgen-binding protein) promotion of sexual isolation mouse, male salivary glands laukaitis, critser, and karn ( ) -(sec-butyl)-dihydrothiazole and dehydro-exo-brevicomin promotion of intermale aggression (in addition to the aforementioned effects on female mice) mouse, male urine novotny,	harvey,	jemiolo,	and	 alberts ( ) esp (exocrine gland–secreting peptide ) induction of stereotyped lordosis responses in females mouse, male tears haga et al. ( ). knockout of v rp abolishes behavioral responses to the mouse sex pheromone esp . darcin (a nonvolatile mup) determination of unconditioned attractive properties of male's urine to female mice mouse, male urine roberts, simpson, armstrong, davidson, and robertson ( ) aphrodisin (a lipocalin) induction of male sexual behavior hamster, female vaginal fluid briand, trotier, and pernollet ( ) -(sec-butyl)-dihydrothiazole putative alarm pheromone (in addition to aforementioned functions) mouse, male urine brechbuhl et al. ( ) of   |     calvi et al. .  | data extraction and analysis this search query returned (pubmed) + (embase) + (psychinfo) + (cochrane) articles for review. after removing du- plicates, we excluded articles (figure ). fifty-seven articles were reviewed in full text by the authors and considered for evaluation. selected articles for review were published between and . we were able to find on the web two relevant studies as unpub- lished dissertation; however, we decided to exclude those studies from this review as they were not peer-reviewed (hatcher, s.d.; owen, s.d.). twelve articles were excluded after reading the full text as they were considered nonpertinent. based on the full-text review, forty-five articles were selected for full-text, in-depth review (table ). a flow diagram of the selection procedure is included in figure . the following variables were extracted from each study: year of publication, chemosignal type, emotion induction, odor control condition, assessment of induced emotion, male/female senders and receivers, olfactory function assessment, stimuli collection material, stimuli presentation, main outcome. data were collected using microsoft excel (version . ). this study does not contain any studies with human participants or animals performed by any of the authors. for this type of study, formal consent is not required.   |   r e s u lt s the studies analyzed were highly heterogeneous in methodology: they differed in the stimulus chosen (sweat or tears); in the method used for the induction of emotional response in the donors (ranging between watching different kinds of videos, to extreme sports ex- perience); in the kind of emotion evaluated; in the subjects enrolled as donors or receivers, differences in subjects included age, sex, and sexual orientation; in the main outcomes and the methods of meas- urement. table describes the key characteristics of the studies in- cluded in this review. .  | intraspecific communication forty-two studies investigated intraspecies chemosignals communi- cation in humans. among these, in studies chemosignals derived from axillary sweat extracts from a total of male and female donors; in the remaining two studies, chemosignals derived from sad tears from a total of female donors (gelstein et al., ; oh, kim, park, & cho, ). all donors were healthy adults (minimum and maximum age of and years, respectively). in one article, donors were partners of female receivers (zhou & chen, ). in studies (albrecht et al., ; ferreira, parma, alho, silva, & soares, ; de groot, semin, & smeets, a, b; de groot et al., ; groot, smeets, rowson, et al., ; de groot, smeets, & semin, ; haegler et al., ; mutic, parma, brünner, & freiherr, ; rocha, parma, lundström, & soares, ; wudarczyk et al., , ; zernecke et al., ; zheng et al., ; zhou & chen, ; zhou et al., ), homosexual donors were excluded, as fe- male perceives sweat from heterosexual donors differently than homosexual male sweat (martins et al., ). in order to increase sensibility to emotional signals in receivers of the opposite sex (martins et al., ), in studies only heterosexual receivers were selected (albrecht et al., ; ferreira et al., ; de groot et al., ; groot, smeets, rowson, et al., ; groot, smeets, & semin, ; mutic, brünner, rodriguez-raecke, wiesmann, & freiherr, ; mutic et al., ; rocha et al., ; zheng et al., ; zhou & chen, ), while in the other studies there is no mention of sex- ual orientation of the receivers. odor stimuli were collected on sterile absorbent pads, plastic vials, polypropylene jars, or glass jars. only in cases, white cotton t-shirts have been chosen as stimuli collection material (endevelt- shapira et al., ; singh et al., ; wintermann, donix, joraschky,	gerber,	&	petrowski,	 ). a wide spectrum of stimuli was assessed to induce emotion in the donors. fear was evoked by watching horror video clips in studies (ackerl, atzmueller, & grammer, ; chen, ; chen & haviland-jones,	 ;	ferreira	et	al.,	 ;	de	groot	et	al.,	 ,	 ; de groot, semin, & smeets, a, b; groot, smeets, rowson,	 et	 al.,	 ;	haviland-jones,	mcguire,	&	wilson,	 ;	 iversen	et	al.,	 ;	kamiloğlu	et	al.,	 ;	zhou	&	chen,	 ,	 ). in studies, anxiety sweat was collected from students awaiting an oral examination at the university (adolph, meister, & pause, ; lübke, busch, hoenen, schaal, & pause, ; pause, a; pause et al., ; pause, lübke, laudien, & ferstl, ; prehn et al., ; prehn-kristensen et al., ; rocha et al., ; wudarczyk et al., , ). in studies, emotional response was elicited in donors by highly stressors events as first-time tandem skydive (endevelt-shapira et al., ; mujica-parodi et al., ; radulescu & mujica-parodi, ; rubin, botanov, hajcak, & mujica-parodi, ) or high rope course (albrecht et al., ; haegler et al., ; zernecke et al., ). the trier social stress test (tsst), a validated protocol for inducing moderate levels of psychosocial stress, was administered to	the	donors	in	three	studies	(dalton,	mauté,	jaén,	&	wilson,	 ;	 groot, smeets, & semin, ; wintermann et al., ). the competition was evaluated only by one study by collect- ing axillary sweat after an important badminton match (adolph, schlösser, hawighorst, & pause, ). three studies evaluated the effect on receivers of sexual arousal induced by watching erotic video clips (iversen et al., ; zhou & chen, ; zhou et al., ). four studies evaluated disgust evoked in donors by watching disgust-evoking videos (ferreira et al., ; de groot et al., ; iversen et al., ; zheng et al., ). in the majority of cases, the odor control condition was obtained by sweat pads collected after a neutral exercise session (e.g., ergom- eter trainings [adolph et al., ; albrecht et al., ; haegler et al., ; lübke et al., ; mutic et al., ; pause, a;      |   of calvi et al. prehn et al., ; pause et al., ; pause et al., ; prehn- kristensen et al., ; wintermann et al., ; wudarczyk et al., , ; zernecke et al., ], treadmill exercise [mujica-parodi et al., ; radulescu & mujica-parodi, ; rubin et al., ], a running session [adolph et al., ], stationary cycling [dalton et al., ], hand-bike training [mutic et al., ], or nonstressed outdoor activity [endevelt-shapira et al., ]). f i g u r e   flow diagram of the analysis of the literature records identified through database searching (n = ) s cr ee n in g in cl u d ed e li gi b il it y id en ti fi ca ti on additional records identified through other sources (n = ) records after duplicates removed (n = ) records screened (n = ) records excluded (n = ) • non-emotional chemosignals: • sexual chemosignals and menstrual cycle regulation: • concerning animals and plants: • synthetic chemosignals and drugs: • chemosensory regulation of other physiological processes: • no relevance to the research carried out: • abstract not available: • conference abstracts: full-text articles assessed for eligibility (n = ) full-text articles excluded, with reasons (n = ) • non-emotional chemosignals: • sexual chemosignals: • synthetic chemosignals and drugs: • auditory and visual stimuli: • overview of body odors’ cerebral processing: • concomitance of visual, auditory and chemosensory stimuli: • pregnancy-related changes in olfactory function: included (n = ) human intra-specific communication (n= ) human-animal inter-specific communication (n= ) of   |     calvi et al. t a b l e   list of human intraspecific and human–animal interspecific communication chemosignaling studies emotion vehicle emotional source control assessment senders receivers olfactory function stimulus presentation main outcome reference aggression axillary se boxing session ergometer training state	aggression	version	of	the	staxi	 questionnaire -m -m, -f monex- cellulose filter mask emotion recognition task, emotional stroop task mutic et al. ( ) aggression axillary se mathematical problems with time constraint and negative feedback followed by boxing session mathematical problems without time constraint followed by hand-bike training -mm vas -m -m, -f monex- cotton pads in filter masks under the participants' noses fmri mutic et al. ( ) anxiety axillary se oral exam ergometer training sam -m -f three alternative forced-choice test olfactometer startle reflex and eeg adolph et al. ( ) anxiety axillary se high rope course ergometer training spielberger's stai -m -f sniffin' sticks test odorless teabags attached under participants' nostrils with odorless tape self-report albrecht et al. ( ) anxiety axillary se high rope course ergometer training spielberger's stai -m -m, -f sniffin' sticks test odorless teabags attached under nostrils risk game haegler et al. ( ) anxiety axillary se oral exam ergometer training / -f -f pea identification olfactometer startle reflex lübke et al. ( ) anxiety axillary se oral exam ergometer training questionnaires -m -m, -f / olfactometer priming pause ( a,b) anxiety axillary se oral exam ergometer training salivary cortisol and testosterone samples, sam -m, -f -m non-sa, -f non-sa, -m sa, -f sa self-reported olfactometer startle reflex pause et al. ( ) anxiety axillary se oral exam ergometer training / -m, -f -m non-sa, -f non-sa, -m sa, -f sa pea identification olfactometer eeg pause et al. ( ) anxiety axillary se oral exam ergometer training questionnaires -m -m, -f self-reported olfactometer startle reflex prehn et al. ( ) anxiety axillary se oral exam ergometer training salivary cortisol and testosterone samples, sam -m, -f -m, -f self-reported olfactometer fmri prehn-kristensen et al. ( ) anxiety axillary se oral exam regular class spielberger's stai, -mm vas -f -f short version of the sniffin' sticks test olfactometer categorizing the emotion of a face rocha et al. ( ) anxiety axillary se -hr clinical session -hr lecture / -m, -f -m, -f screening questionnaire phantom patient wearing used cotton t-shirts dental performance singh et al. ( ) anxiety axillary se oral exam stationary cycling sam, vas -m -m, -f monex- olfactometer fmri wudarczyk et al. ( ) anxiety axillary se oral exam ergometer training salivary cortisol samples, questionnaire -m -m, -f monex- odorless teabags attached under participants' nostrils with odorless tape fmri wudarczyk et al. ( ) anxiety axillary se high rope course ergometer training spielberger's stai -m -m sniffin' sticks test vial (placed cm below the participant's nose) face rating zernecke et al. ( ) disgust axillary se disgusting videos neutral videos / -m -f self-reported, clinical visit olfactometer forced-choice task and fmri zheng et al. ( ) disgust, fear axillary se horror or disgusting videos unused cotton pads spielberger's stai and -point likert scales -m -f sniffin' sticks test vial (placed cm below the participant's nose) emg de groot et al. ( ) disgust, fear axillary se horror or disgusting videos neutral videos separate -point likert scales, portuguese version of panas -m, -f -m, -f sniffin' sticks test polypropylene jars ecg electrodes to evaluate cardiac activity ferreira et al. ( ) disgust, fear, happiness, sexual arousal axillary se horror or comical or disgusting or erotic videos unused cotton pads heart rate during watching videos, -point likert scale at the end of the videos -m, -f -m cb, -f cb, -m non-cb, -f non-cb monex- ,	 sniffin' sticks battery polypropylene jars identification iversen et al. ( ) fear axillary se horror videos neutral videos salivary cortisol samples, spielberger's stai -f -f screening questionnaire plastic bottles odor rating ackerl et al. ( ) fear axillary se horror videos neutral videos -mm vas, hidden video camera -m, -f -f self-reported band-aid attached at the philtrum just below the nostrils cognitive task chen et al. ( ) fear axillary se horror videos neutral videos -point likert scales -m, -f -m, -f pea identification, sniffin' sticks test vial (placed cm below the participant's nose) emg de groot et al. ( ) fear axillary se horror videos neutral videos -point likert scales -m -f sniffin' sticks test vial (placed cm below the participant's nose) emg; chinese symbol task de groot et al. ( ) (continues)      |   of calvi et al. t a b l e   list of human intraspecific and human–animal interspecific communication chemosignaling studies emotion vehicle emotional source control assessment senders receivers olfactory function stimulus presentation main outcome reference aggression axillary se boxing session ergometer training state	aggression	version	of	the	staxi	 questionnaire -m -m, -f monex- cellulose filter mask emotion recognition task, emotional stroop task mutic et al. ( ) aggression axillary se mathematical problems with time constraint and negative feedback followed by boxing session mathematical problems without time constraint followed by hand-bike training -mm vas -m -m, -f monex- cotton pads in filter masks under the participants' noses fmri mutic et al. ( ) anxiety axillary se oral exam ergometer training sam -m -f three alternative forced-choice test olfactometer startle reflex and eeg adolph et al. ( ) anxiety axillary se high rope course ergometer training spielberger's stai -m -f sniffin' sticks test odorless teabags attached under participants' nostrils with odorless tape self-report albrecht et al. ( ) anxiety axillary se high rope course ergometer training spielberger's stai -m -m, -f sniffin' sticks test odorless teabags attached under nostrils risk game haegler et al. ( ) anxiety axillary se oral exam ergometer training / -f -f pea identification olfactometer startle reflex lübke et al. ( ) anxiety axillary se oral exam ergometer training questionnaires -m -m, -f / olfactometer priming pause ( a,b) anxiety axillary se oral exam ergometer training salivary cortisol and testosterone samples, sam -m, -f -m non-sa, -f non-sa, -m sa, -f sa self-reported olfactometer startle reflex pause et al. ( ) anxiety axillary se oral exam ergometer training / -m, -f -m non-sa, -f non-sa, -m sa, -f sa pea identification olfactometer eeg pause et al. ( ) anxiety axillary se oral exam ergometer training questionnaires -m -m, -f self-reported olfactometer startle reflex prehn et al. ( ) anxiety axillary se oral exam ergometer training salivary cortisol and testosterone samples, sam -m, -f -m, -f self-reported olfactometer fmri prehn-kristensen et al. ( ) anxiety axillary se oral exam regular class spielberger's stai, -mm vas -f -f short version of the sniffin' sticks test olfactometer categorizing the emotion of a face rocha et al. ( ) anxiety axillary se -hr clinical session -hr lecture / -m, -f -m, -f screening questionnaire phantom patient wearing used cotton t-shirts dental performance singh et al. ( ) anxiety axillary se oral exam stationary cycling sam, vas -m -m, -f monex- olfactometer fmri wudarczyk et al. ( ) anxiety axillary se oral exam ergometer training salivary cortisol samples, questionnaire -m -m, -f monex- odorless teabags attached under participants' nostrils with odorless tape fmri wudarczyk et al. ( ) anxiety axillary se high rope course ergometer training spielberger's stai -m -m sniffin' sticks test vial (placed cm below the participant's nose) face rating zernecke et al. ( ) disgust axillary se disgusting videos neutral videos / -m -f self-reported, clinical visit olfactometer forced-choice task and fmri zheng et al. ( ) disgust, fear axillary se horror or disgusting videos unused cotton pads spielberger's stai and -point likert scales -m -f sniffin' sticks test vial (placed cm below the participant's nose) emg de groot et al. ( ) disgust, fear axillary se horror or disgusting videos neutral videos separate -point likert scales, portuguese version of panas -m, -f -m, -f sniffin' sticks test polypropylene jars ecg electrodes to evaluate cardiac activity ferreira et al. ( ) disgust, fear, happiness, sexual arousal axillary se horror or comical or disgusting or erotic videos unused cotton pads heart rate during watching videos, -point likert scale at the end of the videos -m, -f -m cb, -f cb, -m non-cb, -f non-cb monex- ,	 sniffin' sticks battery polypropylene jars identification iversen et al. ( ) fear axillary se horror videos neutral videos salivary cortisol samples, spielberger's stai -f -f screening questionnaire plastic bottles odor rating ackerl et al. ( ) fear axillary se horror videos neutral videos -mm vas, hidden video camera -m, -f -f self-reported band-aid attached at the philtrum just below the nostrils cognitive task chen et al. ( ) fear axillary se horror videos neutral videos -point likert scales -m, -f -m, -f pea identification, sniffin' sticks test vial (placed cm below the participant's nose) emg de groot et al. ( ) fear axillary se horror videos neutral videos -point likert scales -m -f sniffin' sticks test vial (placed cm below the participant's nose) emg; chinese symbol task de groot et al. ( ) (continues) of   |     calvi et al. emotion vehicle emotional source control assessment senders receivers olfactory function stimulus presentation main outcome reference fear axillary se skydiving nonstressed outdoor activity salivary cortisol sampling, questionnaire -m -m asd, -m td, -f asd, -f td screening questionnaire glass jar covered by a cap with an air filter, inhalation mask and a one-way flap valve perception task endevelt-shapira et al. ( ) fear axillary se skydiving treadmill exercise salivary cortisol, spielberger's stai -m, -f -m, -f self-reported olfactometer fmri and perception task mujica-parodi et al. ( ) fear axillary se skydiving treadmill exercise salivary cortisol samples, spielberger's stai -m, -f -m, -f / olfactometer fmri radulescu and mujica- parodi ( ) fear axillary se skydiving treadmill exercise salivary cortisol samples and self-reported state of anxiety -m -m, -f / olfactometer eeg rubin et al. ( ) fear, happiness axillary se horror or comical videos unused cotton pads -point likert scales -m, -f -m, -f / glass bottles identification chen and haviland- jones	( ) fear, happiness axillary se horror or comical videos unused sweat pads spielberger's stai -m -m pet dogs, -f pet dogs / odor dispenser in the room dogs' behavior, stress and heart rate indicators d'aniello et al. ( ) fear, happiness axillary se horror or comical videos neutral videos -point likert scales -m -f sniffin' sticks test vial (placed cm below the participant's nose) emg groot, smeets, rowson, et al. ( ) fear, happiness axillary se horror or comical videos neutral videos items from the affective circumplex complemented by remaining discrete emotion terms. core affect measured on a two-dimensional affect grid -m caucasian -f caucasian, -f eastern asian sniffin' sticks test polypropylene jars emg and continuous flash suppression techniques to measure unconscious emotions de groot et al. ( ) fear, happiness axillary se horror or comical videos / / -m -m, -f / unused pads identification haviland-jones et al. ( ) fear, happiness axillary se horror or comical videos neutral videos -point likert scales -m -f identification of different odors polypropylene jars -alternative forced- choice reminder task; emg; reaction times (rts) kamiloğlu	et	al.	( ) fear, happiness axillary se horror or comical videos / spielberger's stai -m -m horses / test tube with cotton swab soaked with odor autonomic nervous system activity lanata et al. ( ) fear, happiness axillary se horror or comical videos running, unused sweat pads five-point vas, heart rate -m -m pet dogs, -f pet dogs / vial dogs' behavior, stress and heart rate indicators siniscalchi et al. ( ) fear, happiness axillary se horror or comical videos neutral videos -mm vas -m -f ( ° experiment), -f ( ° experiment) sniffin' sticks test band-aid attached at the philtrum just below the nostrils perception task zhou and chen ( ) fear, happiness, sexual arousal axillary se horror or comical or erotic videos neutral videos -mm vas -m, -f -m, -f pea identification; sit vial (placed cm below the participant's nose) emotion detection task; -point likert scale zhou and chen ( ) happiness axillary se sport competition running salivary cortisol and testosterone samples -m -m, -f pea identification olfactometer scr adolph et al. ( ) psychosocial stress axillary se tsst stationary cycling mood ratings questionnaire -f -m, -f self-reported glass bottles rating person dalton et al. ( ) psychosocial stress axillary se anticipatory stage of tsst neutral videos heart rate during watching videos, salivary cortisol samples -m -f sniffin' sticks test vial (placed cm below the participant's nose) emg, facial expression classification task groot, smeets, rowson, et al. ( ) psychosocial stress axillary se, artificial odors tsst ergometer training sam -m pd, -f pd, -m non-pd, -f non-pd -m or f pd with/without agoraphobia, -m or f non-pd sniffin' sticks test intranasal teflon™ tubing fmri wintermann et al. ( ) sadness female tears sad videos saline solution / -f -m / band-aid attached at the philtrum just below the nostrils fmri gelstein et al. ( ) sadness m fasting and postprandial plasma, f tears sad videos saline solution / -m, -f -m / band-aid attached at the philtrum just below the nostrils appetite assessment by a vas oh et al. ( ) sexual arousal axillary se, androstadienone erotic videos neutral videos skin conductance -m -f pea identification, sniffin' sticks test olfactometer fmri zhou et al. ( ) abbreviations: asd, autism spectrum disorder; cb, congenitally blind; f, female; m, male; panas, positive and negative affective schedule; pd, panic disorder; pea, phenyl ethyl alcohol; r, receiver; s, sender; sa, socially anxious; sam, self-assessment manikin; scr, skin conductance response;	se,	sweat	extracts;	stai,	state-trait	anxiety	inventory;	staxi,	state-trait	anger	expression	inventory;	td,	typically	developed;	tsst,	 trier social stress test; vas, visual analogue scale. t a b l e   (continued)      |   of calvi et al. emotion vehicle emotional source control assessment senders receivers olfactory function stimulus presentation main outcome reference fear axillary se skydiving nonstressed outdoor activity salivary cortisol sampling, questionnaire -m -m asd, -m td, -f asd, -f td screening questionnaire glass jar covered by a cap with an air filter, inhalation mask and a one-way flap valve perception task endevelt-shapira et al. ( ) fear axillary se skydiving treadmill exercise salivary cortisol, spielberger's stai -m, -f -m, -f self-reported olfactometer fmri and perception task mujica-parodi et al. ( ) fear axillary se skydiving treadmill exercise salivary cortisol samples, spielberger's stai -m, -f -m, -f / olfactometer fmri radulescu and mujica- parodi ( ) fear axillary se skydiving treadmill exercise salivary cortisol samples and self-reported state of anxiety -m -m, -f / olfactometer eeg rubin et al. ( ) fear, happiness axillary se horror or comical videos unused cotton pads -point likert scales -m, -f -m, -f / glass bottles identification chen and haviland- jones	( ) fear, happiness axillary se horror or comical videos unused sweat pads spielberger's stai -m -m pet dogs, -f pet dogs / odor dispenser in the room dogs' behavior, stress and heart rate indicators d'aniello et al. ( ) fear, happiness axillary se horror or comical videos neutral videos -point likert scales -m -f sniffin' sticks test vial (placed cm below the participant's nose) emg groot, smeets, rowson, et al. ( ) fear, happiness axillary se horror or comical videos neutral videos items from the affective circumplex complemented by remaining discrete emotion terms. core affect measured on a two-dimensional affect grid -m caucasian -f caucasian, -f eastern asian sniffin' sticks test polypropylene jars emg and continuous flash suppression techniques to measure unconscious emotions de groot et al. ( ) fear, happiness axillary se horror or comical videos / / -m -m, -f / unused pads identification haviland-jones et al. ( ) fear, happiness axillary se horror or comical videos neutral videos -point likert scales -m -f identification of different odors polypropylene jars -alternative forced- choice reminder task; emg; reaction times (rts) kamiloğlu	et	al.	( ) fear, happiness axillary se horror or comical videos / spielberger's stai -m -m horses / test tube with cotton swab soaked with odor autonomic nervous system activity lanata et al. ( ) fear, happiness axillary se horror or comical videos running, unused sweat pads five-point vas, heart rate -m -m pet dogs, -f pet dogs / vial dogs' behavior, stress and heart rate indicators siniscalchi et al. ( ) fear, happiness axillary se horror or comical videos neutral videos -mm vas -m -f ( ° experiment), -f ( ° experiment) sniffin' sticks test band-aid attached at the philtrum just below the nostrils perception task zhou and chen ( ) fear, happiness, sexual arousal axillary se horror or comical or erotic videos neutral videos -mm vas -m, -f -m, -f pea identification; sit vial (placed cm below the participant's nose) emotion detection task; -point likert scale zhou and chen ( ) happiness axillary se sport competition running salivary cortisol and testosterone samples -m -m, -f pea identification olfactometer scr adolph et al. ( ) psychosocial stress axillary se tsst stationary cycling mood ratings questionnaire -f -m, -f self-reported glass bottles rating person dalton et al. ( ) psychosocial stress axillary se anticipatory stage of tsst neutral videos heart rate during watching videos, salivary cortisol samples -m -f sniffin' sticks test vial (placed cm below the participant's nose) emg, facial expression classification task groot, smeets, rowson, et al. ( ) psychosocial stress axillary se, artificial odors tsst ergometer training sam -m pd, -f pd, -m non-pd, -f non-pd -m or f pd with/without agoraphobia, -m or f non-pd sniffin' sticks test intranasal teflon™ tubing fmri wintermann et al. ( ) sadness female tears sad videos saline solution / -f -m / band-aid attached at the philtrum just below the nostrils fmri gelstein et al. ( ) sadness m fasting and postprandial plasma, f tears sad videos saline solution / -m, -f -m / band-aid attached at the philtrum just below the nostrils appetite assessment by a vas oh et al. ( ) sexual arousal axillary se, androstadienone erotic videos neutral videos skin conductance -m -f pea identification, sniffin' sticks test olfactometer fmri zhou et al. ( ) abbreviations: asd, autism spectrum disorder; cb, congenitally blind; f, female; m, male; panas, positive and negative affective schedule; pd, panic disorder; pea, phenyl ethyl alcohol; r, receiver; s, sender; sa, socially anxious; sam, self-assessment manikin; scr, skin conductance response;	se,	sweat	extracts;	stai,	state-trait	anxiety	inventory;	staxi,	state-trait	anger	expression	inventory;	td,	typically	developed;	tsst,	 trier social stress test; vas, visual analogue scale. t a b l e   (continued) of   |     calvi et al. sweat pads collected after watching neutral videos (e.g., wildlife documentaries or weather forecasts) were used as body odor con- trols in studies (ackerl et al., ; chen, ; de groot, semin, & smeets, a; de groot, semin, & smeets, b; groot, smeets, & semin, ; groot, smeets, rowson, et al., ; de groot et al., ;	ferreira	et	al.,	 ;	kamiloğlu	et	al.,	 ;	zheng	et	al.,	 ;	 zhou et al., ; zhou & chen, ). unused cotton pads were adopted	by	four	research	teams	(chen	&	haviland-jones,	 ;	de	 groot et al., ; iversen et al., ; zhou & chen, ). in one study, control body odors were collected during an emo- tionally neutral situation (attending a regular class; rocha et al., ). in studies using tears as stimulus, sadness was evoked in female donors by watching sad films (gelstein et al., ; oh et al., ); the authors used as controls saline trickled down the cheek of donor women. in most studies, donors were tested to assess the right in- duction of the emotion during the experimental session. in some cases,	a	 -point	likert	scale	(chen	&	haviland-jones,	 ;	ferreira	 et al., ; de groot et al., a, b; groot, smeets, rowson, et	al.,	 ;	iversen	et	al.,	 ;	kamiloğlu	et	al.,	 ),	a	visual	an- alog scale like the positive and negative affect schedule (panas; chen, ; mutic et al., ; rocha et al., ; wudarczyk et al., ; zhou & chen, , ), or a self-reported questionnaire (dalton et al., ; pause, b; prehn et al., ) was used. in sixteen studies, a standardized validated scale measuring emotion was administered to donors, like the state-trait anxiety in- ventory (ackerl et al., ; albrecht et al., ; d'aniello et al., ; de groot et al., ; haegler et al., ; lanata et al., ; mujica-parodi et al., ; radulescu & mujica-parodi, ; rocha et al., ; zernecke et al., ), the self-assessment manikin (sam) (adolph et al., ; pause et al., ; prehn-kristensen et al., ; wintermann et al., ; wudarczyk et al., ), or the state-trait anger expression inventory (mutic et al., ). only in one case, the authors used a hidden camera to monitoring reactions associated with measurements of skin conductance, heart rate, and respiratory rhythm (chen, ). in order to assess stress reaction, salivary cortisol samples were collected in ten studies (ackerl et al., ; adolph et al., ; groot, smeets, & semin, ; endevelt-shapira et al., ; mujica- parodi et al., ; pause et al., ; prehn-kristensen et al., ; radulescu & mujica-parodi, ; rubin et al., ; wudarczyk et al., ). in all the analyzed studies, the receivers were healthy subjects with normal olfactory function and no respiratory diseases (age range – years); authors specified that recipient smokers were excluded in studies. receivers' olfaction was assessed by ques- tionnaires or self-reported in papers (ackerl et al., ; chen, ; dalton et al., ; endevelt-shapira et al., ; mujica- parodi et al., ; pause et al., ; prehn et al., ; prehn- kristensen et al., ; singh et al., ; zheng et al., ), whereas smell threshold was assessed using the sniffing' sticks test or	its	extended	version	(monex- )	in	 	studies	(albrecht	et	al.,	 ; ferreira et al., ; de groot et al., , a, b, ; groot, smeets, rowson, et al., ; groot, smeets, & semin, ; haegler et al., ; iversen et al., ; mutic et al., , ; rocha et al., ; wintermann et al., ; wudarczyk et al., , ; zernecke et al., ; zhou & chen, ; zhou et al., ). receivers were asked to identify phenylethyl alcohol in pa- pers (adolph et al., ; de groot et al., a; lübke et al., ; pause et al., ; zhou et al., ; zhou & chen, ), while the brief-smell identification test (b-sit) was used in paper (zhou & chen, ). stimulus was differently presented: plastic or glass bottles were used as stimulus presentation tools in early studies (ackerl et	al.,	 ;	chen	&	haviland-jones,	 ;	dalton	et	al.,	 );	 in the majority of subsequent studies, an olfactometer was used (adolph et al., ; adolph et al., ; lübke et al., ; mujica- parodi et al., ; pause, a; pause et al., ; pause et al., ; prehn et al., ; prehn-kristensen et al., ; radulescu & mujica-parodi, ; rocha et al., ; rubin et al., ; wudarczyk et al., ; zheng et al., ; zhou et al., ); an intranasal teflon tubing was used in one case (wintermann et al., ). a band-aid or a teabag attached just below the nostrils of receivers was used in studies (albrecht et al., ; chen, ; gelstein et al., ; haegler et al., ; oh et al., ; wudarczyk et al., ; zhou & chen, ); as well in stud- ies, vials placed cm below the participant's nose were used (de groot et al., , a, b; groot, smeets, rowson, et al., ; groot, smeets, & semin, ; zernecke et al., ; zhou & chen, ); propylene jars were used in cases (ferreira et al., ;	de	groot	et	al.,	 ;	iversen	et	al.,	 ;	kamiloğlu	et	al.,	 ); a glass jar covered by a cap with an air filter was chosen by one research group (endevelt-shapira et al., ). cellulose filter mask or cotton pads in filter masks under the participants' noses were used in two papers (mutic et al., , ); a phantom pa- tient wearing used cotton t-shirts was selected as stimulus vehicle in one study as well (singh et al., ). main outcomes were very heterogeneous too: correct identifi- cation of the target emotion or odor rating was the main outcome of	five	studies	(ackerl	et	al.,	 ;	chen	&	haviland-jones,	 ;	 haviland-jones	 et	 al.,	 ;	 iversen	 et	 al.,	 ;	 zhou	 &	 chen,	 ). the influence of emotional chemosignals on cognitive tasks like performing word association while smelling one of the three types of olfactory stimuli was used by one research group (chen, ). priming of facial affect perception was the main outcome in one study (pause, a). recognition of facial expressions after the exposition to anxiety or relaxed body odors was the main outcome in papers (mutic et al., ; rocha et al., ; zernecke et al., ; zhou & chen, ). the amplitude of the startle reflex re- corded in the context of chemosensory anxiety signals was the main outcome in studies (adolph et al., ; lübke et al., ; pause et al., ; prehn et al., ). amygdala activation during an fmri session and ability to recognize ambiguous facial expression in relation to exposure to emotional stress body odors was used in one paper (mujica- parodi et al., ). brain areas activation after administration      |   of calvi et al. of chemosensory stimuli (gelstein et al., ; mutic et al., ; prehn-kristensen et al., ; radulescu & mujica-parodi, ; wintermann et al., ; wudarczyk et al., , ; zheng et al., ; zhou et al., ) as main outcome was analyzed in studies. haegler et al. investigated the risk-taking behavior in com- puterized card games after smelling anxiety body odor (haegler et al., ). adolph et al. ( ) measured as main outcome skin conductance response of receivers in response to competition sweat. authors investigated the influence of anxiety body odor on chemosensory event-related potentials recorded during an eeg session in three studies (adolph et al., ; pause et al., ; rubin et al., ). measure of anxiety through the spielberger's state-trait anxiety inventory was evaluated in one study (albrecht et al., ). in seven studies, authors investigated the ability to reproduce the same facial-muscle configuration of the sender in the receiver with emg (de groot et al., , a, b, ; groot, smeets, rowson, et al., ; groot, smeets, & semin, ;	kamiloğlu	et	al.,	 ). singh et al. ( ) analyzed the effect of anxiety signals on the performance of dentistry students on three different dental proce- dures. dalton and colleagues evaluated the influence of psychosocial stress body odor on social judgment (rating warmth and competence about women depicted in video scenario) (dalton et al., ). appetite assessment by a visual analog scale (vas) and food intake in men exposed to the smell of sad tears or trickled saline was the main outcome in study (oh et al., ). cardiac parasym- pathetic activity measured in receivers was the main outcome in case (ferreira et al., ). endevelt et al. evaluated autonomic and behavioral responses to social chemosignals in participants affected with autism spectrum disorder (endevelt-shapira et al., ). .  | interspecific communication we found only three studies investigating the ability of animals to react to human chemosignals. in , for the first time in literature, siniscalchi et al. tested the ability of domestic dogs of various breeds ( males and females) to react to human chemosignals (siniscalchi et al., ). body odors stimuli of fear and joy were collected by male donors, in whom emotions were elicited by watching comical or horror video clips; a -point visual analogue scale and heart rate were examined to confirm the emotional response of the donors. control stimuli were sweat pads collected after a nonstressful situation or after an exer- cise session. main outcomes were dogs' cardiac activity and lateral asymmetry of dogs' nostril while sniffing different emotive stimuli. adopting an experimental paradigm based on behavioral re- sponses on interhuman communication of emotions (de groot et al., ), in the study by d'aniello et al. ( ) male and female pet dogs (labrador and golden retrievers) were induced to smell “happy” and “fearful” human chemosignals collected from male donors; the spielberger's state-trait anxiety inventory was used to control the emotion induction; unused sweat pads were employed as control stimuli; an odor container was located in a space where the dogs could move without restrictions. authors analyzed the interac- tions of the dogs with their owner, with a stranger and with the ex- perimental apparatus while sniffing different emotional body odors as main outcomes, dogs' stress, and heart rate were also measured. finally, after collecting human emotional body odors as in the previous study, lanata et al. analyzed the autonomic nervous system reactions of male horses in response to exposure to human happy and fearful chemosignals (lanata et al., ). the main out- come was time-frequency analysis of horses' heart rate variability.   |   d i s c u s s i o n the understanding of communication beyond words and body lan- guage is taking great interest; chemosignals transmitted through body odors may play a role in the communications in humans and between humans and other species. the first peer-reviewed article on this topic was published in 	 by	 chen	 and	 haviland-jones	 ( ):	 the	 authors	 demon- strated that women performed better at olfactory identification of emotions than men, confirming previous data showing a better ability of women to recognize visual and auditory emotional signals (brody & hall, ). further studies confirm that women are better receivers for che- mosignals than men (de groot et al., a); hence, the majority of the studies involves women as receivers and male as donors. it is clear that chemosignals from donors of the opposite sex are more ef- fective than those from the same sex (martins et al., ) pointing out that chemosignals may be important for reproductive purposes. on the other hand, there does not seem to be a different perception of chemosignals between different ethnicities, suggesting that che- mosignaling communication could act beyond ethno-cultural bound- aries (de groot et al., ). a study on sexual appealing showed reduced physiological mea- sures of arousal and lower levels of testosterone in men who sniffed tears from sad women compared to a control (gelstein et al., ). moreover, a study on the ability to react to body odors from partners demonstrated that intimacy enhances the detection of emotional cues, although not consciously (zhou & chen, ). receivers are generally unable to consciously recognize the stimulus and name the body odor. on the other hand, this is not surprising, as olfaction has been termed “the mute sense” (ackerman, ). several studies showed that humans, as well as animals, are in- fluenced by the emotional state of other subjects, and that exposure to fear or anxiety-related chemosignals can influence the perfor- mances of receivers in cognitive, behavioral, and emotional tasks (adolph et al., ; albrecht et al., ; chen, ; de groot et al., , a, b; groot, smeets, & semin, ; ferreira et	al.,	 ;	kamiloğlu	et	al.,	 ;	lübke	et	al.,	 ;	mutic	et	al.,	 , ; pause, a; prehn et al., ; prehn-kristensen et al., ; radulescu & mujica-parodi, ; rocha et al., ; wudarczyk et al., , ; zernecke et al., ; zhou & chen, of   |     calvi et al. ; zhou et al., ). exposure to negative emotions heightened caution and vigilance in cognitive tasks (chen, ), improved abil- ity to recognize ambiguous faces expressions (zernecke et al., ; zhou & chen, ), diminished the priming effect of happy faces in recognizing neutral faces (mutic et al., ), and increased risk behavior in decision-making tests (haegler et al., ). it has been suggested that increased perception and reaction to anxiety and fear may be responsible for social anxiety; in fact, pause et al. demonstrated that the defense reflex and the required neuro- nal resources of anxiety-related chemosignals were enhanced as in socially anxious receivers as compared to nonsocially anxious ones ( pause et al., ; pause et al., ). overall, negative emotions of the donor, as anxiety and fear, seem to be perceived by and influence social behavior in the recipi- ent, inducing defense (adolph et al., ), modifying risk-taking be- havior (haegler et al., ), influencing performances in cognitive and perceptive tasks (de groot & smeets, ) by altering neuronal responses in the amygdala (mujica-parodi et al., ), and in brain areas involved in the processing of emotions (ackerl et al., ; chen, ; groot, smeets, & semin, ; endevelt-shapira et al., ;	haviland-jones	et	al.,	 ;	lübke	et	al.,	 ;	pause,	 a). chemical communication seems to be involved also in food choice and in the social importance of eating, having a huge impact in human social life, as demonstrated by zheng et al. ( ): body odors, collected after inducing disgust, activate social and emotional brain areas in recipients. even though negative emotions and sexual arousal have a more definite role in the human evolution, some evidences for the ability of humans to recognize and be influenced by the odor of happiness have	been	published	(chen	&	haviland-jones,	 ;	groot,	smeets,	 rowson, et al., ). data concerning the transmission of happiness have highlighted and extended the role of chemosignals in the interhuman communi- cation, suggesting a more important role of these molecules other than the induction of the fight-or-flight response. data on congen- itally blinds individuals demonstrate an increased ability of these subjects, as compared to controls, to recognize chemosignals related to fear and disgust; on the other hand, blind subjects failed in identi- fying amusement and sexual body odors (iversen et al., ). taken together, these findings showed that negative emotions are better perceived by subject with impaired visual performance, suggesting an important role for the connection of vision and olfaction in iden- tifying “positive” emotions, whereas negative emotions are well per- ceived by the sole use of olfaction. these observations underline the primitive role of olfaction in the fight-or-flight response. the study of chemosignal communication may be important in psychiatric diseases as they could be useful in the diagnosis and maybe in the treatment of these diseases. on this regard, few stud- ies have been published, namely on patients with panic disease (pd; wintermann et al., ) and in patients with autism spectrum dis- order (asd; endevelt-shapira et al., ). in patients with pd, brain areas involved in the process of anxiety chemosignals are altered (wintermann et al., ) and this alteration may contribute in their panic response to environmental stimuli that are perceived as neu- tral for healthy individuals. also in asd, social anxiety chemosignals have different effect as respect to typically developed patients. endevelt-shapira and colleagues showed a dissociated pattern of autonomic and behavioral responses in asd subjects, suggesting a new interpretation to the impaired emotional regulation in asd, whose underlying mechanisms are still unclear and can potentially open new perspectives of research for diagnosis and therapy of these patients (endevelt-shapira et al., ). in cognitively healthy subjects, anxiety chemosignals may influ- ence job performances as it has been demonstrated by singh et al.: in their experiment, authors showed that dentistry students worsened their professional performances if exposed to body odors produced in an anxiety-inducing situation (singh et al., ). notably in the majority of studies, the detection rate of the tar- get emotion was very poor, suggesting that chemosignaling commu- nication in humans acts below awareness (pause et al., ; zhou & chen, , ). chemosignals may also be important in mediating interspecific communication, especially in domesticated species such as dogs and horses living often in close proximity with humans. they have partic- ular skills to detect and respond to human communicative signals, fo- cusing mainly on gestures (d'aniello, scandurra, alterisio, valsecchi, & prato-previde, ; dorey, conover, & udell, ; scandurra, alterisio, aria, vernese, & d'aniello, ; scandurra et al., ). dogs and horses went through convergent evolution, whereby they have become human social partners, in which the reciprocal reading of the emotional status would be a very useful tool in many situations and has an important biological fitness benefit. indeed, dogs and horses are able to recognize and appropriately respond to human emotions by interpreting visual and acoustic messages (albuquerque et al., ; merola, marshall-pescini, d'aniello, & prato-previde, ; morisaki, takaoka, & fujita, ; nagasawa, murai, mogi, & kikusui, ; smith, proops, grounds, wathan, & mccomb, ). however, such species are much more olfactory focused than humans, which make them excellent study models for researches on chemosignaling. results showed that human fear chemosignals induced the reproduction of behaviors and physio- logical state of the sender in dogs (d'aniello et al., ; siniscalchi et al., ). moreover, dogs exposed to human happiness che- mosignals appeared more confident with strangers, implying that a relaxed mood of owners calms their pet dogs (d'aniello et al., ). in horses, human fear and happiness chemosignals induced sympathetic and parasympathetic changes indicating emotional activation (lanata et al., ). however, this latter study, while providing interesting data, remains preliminary, due to the little sample size. overall fear, anxiety, dominance, and sexual arousal are the most recognized emotions through chemosignals (de groot & smeets, ), whereas the demonstration of recognition of happiness is less frequent (groot, smeets, rowson, et al., ). this was also true in humans if the pattern of emotional recognition used is vi- sual	(jiang,	costello,	fang,	huang,	&	he,	 ;	pourtois,	grandjean,	      |   of calvi et al. sander, & vuilleumier, ), which make the data less robust and awaiting confirmation. alternatively, it is possible that emotions such as fear, anxiety, dominance, and sexual arousal could be more easily recognized in contrast to happiness, due to their major evolutionary relevance and reproductive role.   |   c o n c l u s i o n s despite the wide heterogeneity between studies and the small sample sizes analyzed, the evidences highlight the importance of chemosignals in social interaction, empathy with the partner, social judgment, danger detection, social aspect of eating, risk-taking be- havior, stressful performance, and perhaps perception of happiness. less evidence of a role of chemosignals in personality disorders and psychiatric pathologies is available, and there are no data on chemosignaling neurodegenerative and age-related brain diseases. improving our knowledge on chemosignal communication in pa- tients with psychiatric or neurodegenerative disorders could be of paramount importance to better understand the disease pathophys- iology and to develop new diagnostic and therapeutic strategies, and to this extent, the adoption of a clear evidence-based study design is of fundamental importance. a c k n o w l e d g m e n t this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. c o n f l i c t o f i n t e r e s t the authors have no conflicts of interest to declare. a u t h o r c o n t r i b u t i o n pda and bda conceived and supervised the study, as and mm su- pervised the study, ec and uq retrieved the data, and all the authors wrote and approved the manuscript. d ata ava i l a b i l i t y s tat e m e n t data sharing is not applicable to this article as no new data were cre- ated or analyzed in this study. o r c i d elisa calvi https://orcid.org/ - - - anna scandurra https://orcid.org/ - - - patrizia d'amelio https://orcid.org/ - - - r e f e r e n c e s ackerl, k., atzmueller, m., & grammer, k. 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\"\u e","eldeventslobbypageurl":"https:// ","eldsharewithtext":"https:// ","eldaddtocaltext":"https:// ","eldwhatsuplobbypageurl":"https:// ","eldsearchresultspageurl":"https:// ","elddefaultimage":"https://"}] 	 דלג לתפריט ראשי 	 דלג לתוכן העמוד 	 דלג למפת האתר מה תרצו לחפש? - בכדי להתחיל את החיפוש יש להקיש אנטר פתיחה/סגירה תפריט כפתור הניגודיות 	 	 בחר שפה 	 	 	 	 	 	 	 	 																 	 	 	 	 * * * 	 	 	 המרכז הבינתחומי הרצליה עברית 	לימודים אקדמיים - הבינתחומי הרצליה 		   	 				 		 			 				 					 						 סגור טריילר סגור טריילר צפה בטריילר לעצירת הבאנר לניגון הבאנר 					 				 			 		 			 				 					 						 ｜ ｜ 	 	 	 	 	 	 					 				 			 		 			 				 					 						 	 	 					 				 			 		 			 				 					 						 	 סגור מודאל 					 				 			 		 			 				 					 						 	 					 				 			 		 	 	 מפה ודרכי הגעה 	 	 	 	 	 	 	 	 	 	 	 	 	 	 	 	 go to: complement ther clin pract. author manuscript; available in pmc august . published in f inal edited f orm as: complement ther clin pract. august; ( ): – . published online june . doi: . /j.ctcp. . . pmcid: pmc nihmsid: nihms creating a therapeutic and healing environment with a pet therapy program amanda bulette coakley, rn, phd and ellen k. mahoney, rn, dns author inf ormation ► copyright and license inf ormation ► the publisher's f inal edited version of this article is available at complement ther clin pract abstract background hospitalized patients encounter stressors that impact their experience and recovery. there is a need for theoretically based, empirically supported nursing interventions to create a therapeutic and healing environment that decrease stress and improve patients’ experiences. purpose to determine whether pet therapy interventions improve physiological, behavioral and mood outcomes and experiences of hospitalized patients. m e thods a single group pre- post quasi-experimental design with mixed methods was used in hospitalized patients. paired t-tests were used to evaluate changes from baseline following a pet therapy intervention. qualitative data were analyzed using content analysis. . re sults compared with baseline, patients had significant decreases in pain, respiratory rate and negative mood state and a significant increase in perceived energy level. quantitative and qualitative findings provide support for decreased tension/anxiety and fatigue/inertia and improved overall mood. conclusions pet therapy is a low-tech, low-cost therapy that improved mood and was meaningful to hospitalized patients. keywords: pet therapy, therapeutic, healing, stress reduction, recovery hospitals can often be lonely and stressful places for patients compromised by illness and separated from family and loved ones. while patients generally rate nurses, doctors and other healthcare workers high on patient satisfaction surveys, they often rate the overall experience of hospitalization low (cutshall, fenske, kelly, phillips sundt & bauer, ; hospital pulse report). aligned with the goal of creating a more patient responsive health care system (i nstitute of medicine, ), there is a growing emphasis on improving hospitalization for patients and their families by creating a therapeutic and healing environment (g eary, ; westchester county business journal, ; whitehead, ). there is a pressing need to develop theoretically based and empirically supported nursing interventions to achieve this goal. hospitalized patients encounter multiple stressors, including pain, lack of sleep, concerns about outcomes, and unfamiliar environment, that can impact their experience, well-being and recovery (broadbent, petrie, alley & booth, ; cutshall et al., ; kiecolt-g laser; mcg uire et al., , pearson, maddern, fitridge, ). to help reduce this stress, some hospitals have incorporated complementary therapies such as music, http://www.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&retmode=ref&cmd=prlinks&id= http://dx.doi.org/ . % fj.ctcp. . . http://www.ncbi.nlm.nih.gov/pubmed/?term=coakley% ab% bauth% d http://www.ncbi.nlm.nih.gov/pubmed/?term=mahoney% ek% bauth% d http://www.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&retmode=ref&cmd=prlinks&id= go to: go to: go to: mind-body interventions, therapeutic touch and pets to help patients cope with stressors while hospitalized (cutshall, et.al. ; stanley-hermanns & miller, ). complementary and alternative therapies, including pet therapy, are among the domains directed toward creating a healing environment identified by the national i nstitutes of health (johnson, meadows, haubner & sevedge, ), but current descriptive knowledge needs to be expanded to develop the evidence needed for practice and policy (filan & llewellyn- jones, ; johnson, ; wilson & barker, ). i nterventions that enhance coping and improve patient responses to symptoms are among the priorities for knowledge development (national center for complementary and alternative medicine, n.d.; national i nstitute of nursing research, n.d.). the purpose of this study was to evaluate the efficacy of a pet therapy intervention as a complementary therapy to improve stress-related outcomes for hospitalized patients. background by introducing multiple strategies to decrease stress, patients have choices around those interventions that are most beneficial to them in improving their well-being. one major teaching hospital in the northeastern united states has introduced comforting techniques (barron, coakley, fitzgerald, & mahoney, ) along with implementing a pet therapy program, co-led by the department of nursing and the volunteer department. the pet therapy program uses volunteer handlers and their own dogs to visit patients on twelve inpatient and one outpatient department two afternoons each week. each dog is screened by an outside agency specializing in evaluating animals to be part of pet therapy programs in healthcare settings. the current program initially began on inpatients units in . as part of the initial trial period, the first fifty patients visited by dogs were asked to complete a semantic differential scale to rate their experience with the pet therapy program. all of the participants rated the experience as very favorable and recommended that the program continue. many patients handwrote comments on the data collection form. for example, one participant described the dog as a connection to the outside world, and that touching a warm friendly dog made them feel connected and cared for. while all of the comments were very positive, one statement seemed to capture the essence of the program: “i thought that i would not smile today, and then i saw maggie!” the current study builds on this preliminary support conceptual framework the science of unitary humans (rogers, ) provided the conceptual framework for the pet therapy intervention. rogers described all living matter as an energy field. an energy field consists of the body, mind, emotions and environment. energy fields are dynamic and in continuous interaction with the environmental field. when something like an animal is introduced into the patient’s energy field, the experience changes for the person. one dog handler noted that “patients started to smile as soon as i enter the hospital with a dog, (evans, personal communication, ). feedback from patients and nurses, the visits with dogs used in the pilot pet therapy program provided comfort to patients, stress decreased and the hospital experience was seen as more positive. when patients have less stress and feel better about their hospital stay, it is expected that these changes will have a positive impact on their recovery. stre ss and re cov e ry psychoneuroimmunology (pni ) provides a foundation for understanding the relationship between stress and recovery and supports a theoretical linkage of psychobehavioral and physiological outcomes that can be achieved with the complementary pet therapy intervention. for example, pni suggests that psychological variables have a direct effect on “stress” hormones and that in turn can modulate immune function and psychological well-being (cole, g awlinski, steers & kotlerman, ; johnson, meadows, hauber & sevedge, ). the main theme of the pni theory is that stress interferes with recovery. complementary therapy interventions may modulate this relationship by reducing stress and enhancing coping and have been identified as a priority for nursing research (mccain, g ray, walter & robins, ). preliminary studies support the potential of pet therapy as such an intervention. theoretically-based, non-invasive indicators of stress management applicable to acutely ill and hospitalized patients include vital signs, perceived pain and energy, mood and subjective patient experience. literature review pe t the rapy and patie nt outcome s go to: physiologic measures go to: according to literature from the past decade, pet therapy has been beneficial to patients in intensive care settings, pediatrics, with spinal cord injuries and the elderly (cole & g awlinski, , g iuliano, bloniasz, & bell, , bouchard, landry, belles-i sles, & g agnon, , counsell, abram, & g ilbert, ). patient responses to this intervention include feeling happy, more calm and less lonely after a pet visit (cole & g awlinski, ) as well as having a decrease in anxiety, systolic pulmonary artery pressure, epinephrine and norepinephrine levels (cole, g awlinski, steers & kotlerman, ). a study in pediatrics found that pet therapy distracts children from pain perception and may possibly activate comforting thoughts regarding companionship and home (sobo, eng, & kassity-krich, ). patients on general care units reported feeling happy, comforted, satisfied, relaxed, attached, and peaceful after a dog visit (coakley & somerville ). pet therapy is an intervention that can provide diversion and comfort by providing a link to the familiar (johnson, meadows, haubner, & sevedge, ). the literature reports that pets can make a difference for people by decreasing loneliness and isolation. there are a few studies that show how pets can affect these behaviors and responses to patients in the hospital setting including improve mood, comfort and relaxation (cole & g awlinski, ;; johnson, meadows, haubner & sevedge, ). despite nursing leaders such as florence nightingale who advocated for the importance of animals within the care environment (brodie & biley, ), pet therapy is a fairly new phenomenon in hospitals. healthcare administrators have been reluctant to let animals into hospitals because of fear of how animals would respond when emergencies happen, zoonotic infection (infections that can be passed from animals to humans) and fear that they would mess or bark and scare patients and families. there are a few studies that have examined the experience of pet therapy with patients (g iuliano & bell, , bouchard et al. , cole & g awlinski, , counsell et al., , cole et al., ; sobo et al., ), however none that have studied pet therapy program as an intervention that has an impact on recovery. patients who have less stress after a visit with a dog and are more relaxed should recover more quickly. purpose the purpose of this investigation was to explore conceptually-based outcomes of participation in a pet therapy intervention in hospitalized patients. we hypothesized that patients who received the pet therapy visit would have lower vital signs, less pain, more energy and better mood after experiencing the pet therapy intervention compared to these same measures before the pet therapy visit. a second purpose was to describe the patient experience of the pet visit. methods sample and se tting after approval from the i nstitutional review board, a convenience sample of patients who met the hospital pet therapy eligibility criteria (see table ) was recruited for the study. i nclusion criteria were: english speaking; years of age or older; and able to give informed consent. patients were excluded from the study if they were hemodynamically unstable. i nitial screening for eligibility was completed by staff nurses caring for the patients and then verified by research nurses who explained the study and sought patient consent. the study took place on three inpatient units where the pet therapy program had been implemented. table pet therapy eligibility criteria de sign a single group pre- post quasi-experimental design with mixed methods was used to evaluate the effect of pet therapy on patient outcomes and experience. instrume nts and m e asure s vital signs, including blood pressure, pulse and respirations were used as non-invasive indices of physiological stress. the blood pressure was measured using a mercury sphygmomanometer, and a stethoscope. an appropriate cuff size was used for each subject. the systolic blood pressure was recorded at http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / behavioral measures mood state exit interview procedure pet therapy intervention the first phase of the korotkoff sounds and the diastolic blood pressure was recorded at the fifth phase of korotkoff sounds. heart rate was measured by counting the radial pulse for one minute. respiratory rate was measured by counting inspirations and expirations for one minute. patient perceptions of pain and level of energy were measured as an index of theoretically-based behavioral responses to the pet therapy intervention. level of pain was measured using a visual analog scale (vas) for pain with equal to “no pain” and equal to “pain as bad as it can be”. a vas is a scale determined by a straight line that represents the continuum of the dimension being measured with anchors at either end to help delineate boundaries of a measure (mcdowell & newell, ). the scale was printed horizontally and required about seconds to complete. each patient was asked to rate his/her level of pain prior to and immediately following the pet visit. level of energy was measured using a visual analog scale (vas) with equal to “no energy” and equal to “as much as energy as possible”. each patient was asked to rate his/her perceived level of energy prior to and immediately following the pet visit. the profile of mood states survey (poms) (mcnair, lorr, & doppleman, ) is a self report assessment of six transient mood states: tension-anxiety, depression-dejection, anger-hostility, vigor-activity, fatigue-inertia and confusion-bewilderment. a total mood disturbance score also can be calculated. participants are asked to respond to adjectives that reflect current mood on a -point likert scale. choices range from not at all ( ) to extremely ( ). the higher the scores indicate a more negative mood with the exception of the vigor-activity subscale. the -item brief form, takes -minutes to complete, is used often with the elderly and with those recovering from surgery (mcnair, ).the poms has well-established evidence of internal consistency and test-retest reliability and predictive, construct and factorial validity (frank-stromborg & olsen, ; mcnair, heuchert, & shilony, ). i nternal consistency reliability for this study was conducted on each of the subscales and the total scores and ranged from ά. -. three open-ended questions were asked to capture patients’ perceptions about their experience with the visit with the dog: ) “what has this experience with a dog visit been like for you?”: ) “was the visit with the dog what you expected it to be?”; and ) “would you want to have another visit with a dog if you were a patient at this hospital again?” proce dure staff nurses from the three-inpatient units helped to identify eligible patients for the study. all data were collected by research nurses from the g eneral clinical research center (g crc) on the inpatient units. baseline assessments were performed immediately prior to the pet therapy intervention. follow-up assessments occurred immediately following the dog visit with patients serving as their own control in order to evaluate change in response to the intervention. the research protocol was designed around an existing pet therapy program. two days per week from september to july , staff nurses on the three in-patient units identified participants who had requested to participate in the pet therapy program. the nurse determined the appropriateness of the referral by utilizing the patient i nclusion and exclusion criteria and the i nfection control guidelines (table ). the patient’s nurse discussed the purpose of the pet therapy program with the patient and obtained verbal consent. the nurse contacted the volunteer department that coordinated each visit by verifying patient’s name, date, time, and location of visit. the appropriateness of the visit was determined at the discretion of the nurse caring for the patient. the nurse caring for the patient supervised pet visitation as appropriate, to assure that handlers followed established infection control policy and guidelines. while nurses were instructed to curtail the visit if adverse behaviors were observed, and there were no instances when this was necessary. i mmediately prior to the visit with the dog, the research nurse collected baseline measures of vital signs, pain and energy levels at the bedside and all participants completed the short version poms. the research nurse waited outside the room as the volunteer handler and the dog entered the room. after the handler and dog left the room, the research nurses returned to obtain post-visit measures of vital signs, pain and energy vas, and poms immediately following the intervention. additionally, all subjects were asked to answer pre- determined open ended questions about their perception of the pet therapy experience. the volunteers introduced themselves to the patient. the pet therapy intervention http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / go to: was conducted in an individualized manner within the standard protocol based on patient preference. some patients preferred to talk with the handler about the dog, their own dogs or other pets from their childhood. other patients wished to visit quietly with the dog while the handler stood nearby. the pet therapy interventions lasted on average of minutes with each subject. data analysis quantitative data were analyzed using spss version . descriptive statistics were performed on demographic, physiological, behavioral and mood variables. data were analyzed to determine if they were normally distributed and met the assumptions of the planned analyses. a paired t-test was used to analyze pre-post quantitative data. to minimize potential type error, bonferroni’s procedure, which controls for the escalation of significance across multiple comparisons, was used. experiment wide alpha was set at p <. such that each test had to reach a level of p < . (. / ) to be considered statistically significant. one- tailed tests were used for hypothesis testing. qualitative data from the exit questionnaires were analyzed by the pi of this study and a research student not involved in data collection. content analysis was used to analyze this data. the unit of analysis was identified as phrases or sentences contained from the responses that were transcribed by the principal i nvestigator. i nter-rater reliability was established and key findings were synthesized into categories reflecting the subscales of the poms when both individuals came together with their own identified themes. content analysis is a qualitative research method that is used to isolate and interpret themes, issues and repeated patterns (denzin & lincoln, ) and refine understanding as new insights about the data emerge. the strategies for analysis outlined by downe-wamboldt ( ) were followed. results characte ristics of the sample sixty-one subjects participated in the study. two subjects did not complete the post-test and were dropped from the analysis, resulting in a final sample of patients. descriptive characteristics of the sample are presented in table . there was a wide range in both age (median = ) and length of stay (median = ). medical diagnoses included cancer, asthma, ai ds, heart failure, diabetes, coronary artery disease and gastrointestinal (g i ) bleeding. surgical diagnoses included amputation, hysterectomy, aneurysm repair, venous bypass surgery, g i surgery and carotid endarterectomy. table baseline demographic characteristics of the sample (n = ) physiologic and be hav ioral outcome s the first hypothesis, that there would be a significant decrease in blood pressure, heart rate, respiratory rate and pain, and increase in energy perception, from baseline to post-pet therapy was partially supported. mean scores and differences pre- and post-pet therapy visits for vital signs, pain and energy are depicted in table . compared with baseline scores, patients had small but significant decreases in respiratory rate and pain and a corresponding increase in energy levels following the pet therapy intervention. there were no significant changes in systolic or diastolic blood pressure or pulse. table comparison of vital signs, pain and energy levels at baseline and post-pet therapy visit (n= ) m ood state outcome s the second hypothesis, that mood would improve in response to the pet therapy intervention, was supported. total mood disturbance (tmd) scores improved significantly from baseline to post pet therapy follow-up, decreasing by %. table depicts these changes in poms total and subscale scores from baseline to post pet http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / go to: therapy intervention. as shown in figure , changes in several negative mood state subscales accounted for the change in tmd. statistically significant improvements were noted for tension/anxiety, anger/hostility, fatigue/inertia and depression/dejection subscales. clinically important changes in mood state, indicated by improvement by more than one-half standard deviation from baseline was achieved with tension/anxiety, fatigue/inertia and tmd. there were no changes in the vigor/activity or confusion/bewilderment subscales. figure poms subscale and total scores before and after pet therapy intervention table comparison of mood states at baseline and post-pet therapy visit (n= ) qualitative comments made by the subjects at the end of the pet therapy visit reflected these mood state changes. for example, the decrease in tension and anxiety was noted by several patients. five patients reported that the dog visit was calming, one patient called it nice, another patient called it comforting and one said “there was a reduction of anxiety.” patients also experienced a decrease in depression-dejection. comments that reflect this change include; “good therapy;” “great, enjoyed it immensely;” and “forgot about everything else.” three patients said it “brought my spirits up”. i n terms of anger-hostility, many patients called the experience rewarding, happy, very pleasurable, comforting, “brightens your day/better mood.” reflecting improvements in fatigue-inertia, patients said the visit with the dog was relaxing, one person said “it takes away some of the tiredness” and another reported “i ’m moving my arms more”. while the vigor- activity subscale had almost no change in score, twenty-five patients reported that they enjoyed the visit. patient comments included: “oh, i loved it!” “wonderful;” “breath of fresh air;” and “cheered me up.” there were no negative comments. discussion the purpose of this study was to evaluate the efficacy of a pet therapy program in improving theory-based physiological, behavioral and experiential outcomes in hospitalized patients. participants reported improved levels of pain and energy and most mood scores following the visits with the dogs. although blood pressure and pulse did not change, the qualitative data collected at the end of the pet therapy visit indicated that the participants felt more calm, relaxed, engaged, “cheered up” and that they valued the experience, supporting previous reports. johnson and her team ( ) argued that patients' expressions of the benefits of visits with dogs may have even more meaning than the measurable results. while this study did demonstrate positive behavioral outcomes, compatible with those of cole and g awlinski ( ) and supportive of the unitary transformative perspective, the qualitative responses about the experience complement hypothesized relationships and also add to knowledge of how short-term improvements in energy and pain and mood might facilitate recovery from acute illness. . rogers and other nurse theorists from a unitary transformative perspective (picard & jones, ) describe human energy fields and environmental fields as dynamic and reciprocal. changes in one field can affect the other. i n this study, the introduction of a dog into a patient’s field altered the environment and resulted in actual and perceived changes in the recipient of pet therapy. this study contributes to the literature on creating therapeutic and healing environments in healthcare settings through the implementation of complementary interventions as a way to benefit patients. a pet therapy program is one example of these interventions and is similar to other complementary interventions in that they provide an opportunity for nurses to focus on their patients in a unique and interactive way. the findings in this study are similar to those of barron, et al. ( ) who reported that by providing therapeutic touch (tt) to oncology patients, nurses were able to focus on their patients and make a connection with them in a more meaningful way. through this connection nurses were able to help patients recover in a way that is different from the more traditional biomedical approach. either through distraction from hospital routines and treatments or through the presence and interaction with an animal as in the case of this study or through the interaction with the nurse using tt in the case of the barron article, patients http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /figure/f / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /figure/f / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /figure/f / http://www.ncbi.nlm.nih.gov/pmc/articles/pmc /table/t / go to: go to: reported both interventions as comforting and relaxing. the results of this investigation are positive and indicate there are benefits of pet therapy visits with hospitalized patients. however in this current investigation, the visits with patients were only on average ten minutes in length which may explain why some of the physiological metrics did not change as much as hypothesized. additionally, the pet visits were only evaluated once during a hospitalization so it is unknown if repeated visits with dogs would yield different perhaps stronger results. limitations there are important limitations to this study that include the lack of a control group, the small number of subjects and the convenience sample. i n addition, there was potential for subject bias as there was a relatively short period of time between the completion of pre-post data collection and the risk that subjects could have remembered their earlier responses when completing the post-pet visit questionnaires. however, it is also noteworthy that scores consistently changed in a positive direction. during this study, pet therapy was conducted in the usual manner with patients deciding what was most therapeutic for them, either visiting with the dog or visiting with the handler or both, thus individualizing the intervention. other studies that have evaluated pet therapy programs have separated visits with the dogs from visits with the handlers. this may account for different and significant findings in this study compared to the johnson et al. ( ) study that separated the dog visits from visits with people and found no significant study results. similar to the intervention used in this study, cole and g awlinski ( ) found that the combination of volunteer and dog resulted in more improvements in cardiopulmonary pressures, neurohormone levels and state anxiety compared to volunteer only and usual care control groups. johnson and others (e.g. wilson & barker, ) have raised key questions about the design of control conditions that are salient to the study of complementary therapies where “presence,” choice and individualization may be critical intervention components. another limitation of this study may have been the scope of the pet therapy program at the study site. currently, dogs visit with patients on tuesdays and thursdays, because of the challenges related to recruiting and retaining dog handler volunteers. since dog visits were limited to two days per week and the availability of nurse data collectors, some patients had data collected at the beginning of their hospitalization while others were getting ready for discharge. there may have been stronger effects if all patients have been seen by the dog when they were the most ill. we recommend that future studies include a comprehensive integrative care program that offers different evidence-based therapeutic interventions to patients to help them relax, decrease pain and reflect on the interaction with a nurse that is different from the traditional biomedical approach that is currently offered to patients during hospitalization. randomized control studies are needed to look at the relationship between stress, relaxation and recovery in patients who have visits with a dog compared to those who do not. further work is needed to learn more about how this low tech, low cost intervention provides an opportunity for hospitalized patients to interact with animals and have an experience that is humanistic in nature. i t is important to look at how these complementary interventions programmatically may have an impact on creating a healing and therapeutic environment and ultimately on the recovery of hospitalized patients. acknowledgements the authors wish to acknowledge mary sullivan rn, ms, jane flanagan aprnc, phd, kathy habeeb rn, bsn, mary elizabeth mcauley rn, bsn, sharon bouvier rn, ms, jacqueline somerville rn, phd and paul bartush for their contributions and support of the pet therapy program and this research study. funding: the project described was supported by g rant number m -rr- , massachusetts g eneral hospital g eneral clinical research center, from the national center for research resources. the content is solely the responsibility of the authors and does not necessarily represent the official views of the national center for research resources or the national i nstitutes of health… footnotes publisher's disclaimer: this is a pdf file of an unedited manuscript that has been accepted for publication. as a service to go to: go to: our customers we are providing this early version of the manuscript. the manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. conflict of interest statement: there are not conflict of interest associated with this study or this manuscript. contributor information amanda bulette coakley, massachusetts g eneral hospital, founders house , massachusetts g eneral hospital, boston, ma usa, email: abcoakley@partners.org. ellen k. mahoney, cushing hall, boston college, chestnut hill, ma , email: ellen.mahoney@bc.edu. references . barron am, coakley ab, fitzgerald e, mahoney e. i ntegrating therapeutic touch in nursing practice on an i npatient oncology and bone marrow transplant unit: an exploratory study. i nternational journal of human caring. . baun mm, bergstrom n, langston nf, thoma l. physiologic effects of the human/companion animal bonding. nursing research. ; ( ): – . 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http://www.pressganey.com/galleries/default-file/ _hospital_pulse_report.pdf microsoft word - animals- .docx     animals  ,  ,  ; doi: . /ani   www.mdpi.com/journal/animals  article  leptospira seroprevalence in bardigiano horses in  northern italy  elena vera, simone taddei *, sandro cavirani, jennifer schiavi, mario angelone, clotilde s.  cabassi, emiliana schiano and fausto quintavalla  department of veterinary science, university of parma, via del taglio  ,   parma, italy;  elenavera.dvm@gmail.com (e.v.); sandro.cavirani@unipr.it (s.c.); jennifer.schiavi @gmail.com (j.s.);  marioangelonevet@libero.it (m.a.); clotildesilvia.cabassi@unipr.it (c.s.c.); emiliana.schiano@unipr.it (e.s.);  fausto.quintavalla@unipr.it (f.q.)  *  correspondence: simone.taddei@unipr.it  received:   november  ; accepted:   december  ; published:   december    simple  summary:  leptospirosis  is  one  of  the  most  widespread  zoonoses  worldwide  and  is  considered a re‐emerging disease. in horses, leptospiral infection frequently does not result in a  systemic disease and it is commonly believed that horses play a minor role in spreading the disease,  compared to other livestock and wild animals. however, horses can become carriers and it has been  suggested  that  the  horse  is  the  maintenance  host  for  serovar  bratislava.  epidemiological  data  regarding leptospirosis in horses in europe are lacking and further studies are required. the aim of  this study was to evaluate leptospira seroprevalence in bardigiano horses living in the province of  parma,  northern  italy,  and  to  identify  risk  factors  associated  with  seropositivity.  a  high  seroprevalence against leptospira spp. among bardigiano horses and a high number of infected  farms were  found. unexpectedly, seroprevalence was considerably higher compared  to similar  studies  carried  out  in  italy.  the  location  of  the  farm  and  the  type  of  housing  did  not  affect  seroprevalence, but rodent control might reduce the risk of exposure for bardigiano horses. horses  living in the considered area have high‐risk exposure to different serovars of pathogenic leptospires  and could contribute to the maintenance of the bacterium in the environment.  abstract: a cross‐sectional study was carried out in bardigiano horses in the province of parma,  northern  italy,  to  assess  the  seroprevalence  of  leptospira  spp.  and  to  investigate  risk  factors  associated with the infection. a representative sample of   horses from   farms was selected by  stratified  systematic  randomization.  blood  sera  were  examined  by  mat  for  the  presence  of  antibodies against seven leptospira serovars. ninety animals ( . %;  % confidence interval  . – . ) and   farms ( . %;  % ci  . – . %) were found positive to at least one of the serovars.  the  most  frequently  detected  reactions  were  against  serovar  bratislava  ( . %),  followed  by  canicola  ( . %), tarassovi  ( . %), copenhageni  ( . %), pomona  ( . %) and hardjo  ( . %).  none  of  the  sera  reacted  against  serovar  grippothyphosa.  forty‐eight  horses  ( . %  of  the  seropositives) were positive for more than one serovar and   ( . % of the seropositives) had serum  titres  ≥  . bratislava was  the serovar providing  the highest antibody  titres. prevalence was  significantly higher between adult horses and in farms lacking rodent control (p =  .  and p =  . , respectively). no significant gender or housing‐related difference  in seroprevalence was  found. the anamnestic data suggest that the infection in bardigiano horses is subclinical in most of  the cases. the high seroprevalence indicates that bardigiano horses living in the investigated area  are at high risk of exposure and infection by leptospira spp.  keywords: bardigiano; horse; leptospirosis; risk factors; seroprevalence    animals  ,  ,      of    . introduction  leptospirosis is caused by spirochetes belonging to the genus leptospira (family leptospiraceae,  order spirochaetales) and is one of the most widespread zoonoses worldwide [ , ]. wild animals,  livestock and pets can act as reservoirs of the bacterium. in italy, reporting of cases of this disease is  mandatory with this zoonoses being monitored according to the countryʹs epidemiological situation  (directive  / /ec). however, due to a non‐specific clinical picture,  leptospirosis  is often not  recognized and widely underestimated in both humans and animals. therefore, laboratory tests are  paramount for diagnosis [ ].  as recently suggested [ ], epidemiological data regarding leptospirosis in horses in europe are  lacking. in horses,  leptospirosis does not commonly cause systemic disease [ ]. infection during  pregnancy can result in placentitis, abortion, stillbirths or neonatal mortality, birth of weak foals [ ].  renal localization of serovar pomona occasionally causes fever and acute renal failure, especially in  foals [ ]. the classic icteric form of leptospirosis could be observed in young animals, whereas it is  not commonly reported in adult horses. moreover, leptospira spp. is considered as the most common  infectious cause of equine recurrent uveitis (eru) [ ]. respiratory disorders may also occur [ , ].  the bardigiano is an ancient horse breed from the northern apennine region of italy. the first  information on the bardigiano horse dates back to   and the origin of the breed can be traced to  the horse of belgian gaul [ ]. the breed takes its name from the medieval village of bardi, located in  the province of parma, and consists of a homogeneous population of horses with typical and distinct  traits. the bardigiano horse falls into the pony category. the breed is meso‐brachymorphic type and  the coat color is bay, with dark bay being the most prevalent. the traditional use of bardigiano horse,  long since appreciated for its rusticity and docility, was that of agricultural work in mountain areas,  besides meat production. however, in recent decades, the bardigiano horse was also confirmed to be  very  suitable  for  use  as  a  saddle  horse,  especially  for  tourism  purposes,  and  for  pet  therapy.  bardigiano horse breeding is widespread in the province of parma and in hilly and mountainous  areas of the regions emilia‐romagna, liguria and tuscany. however, this breed is spreading to other  italian regions, as well as to other european nations, such as germany and hungary. in italy, the  current population is estimated at   bardigiano horses (data from the ministry of agricultural  food,  forestry  and  tourism  policies.  available  online:  https://www.politicheagricole.it/flex/cm/pages/serveblob.php/l/it/idpagina/  (accessed on    september  )), with the province of parma accounting for about   animals. most of them are  kept out on pasture, being stabled during the winter only.  the aim of this study was to evaluate the seroprevalence of leptospira in bardigiano horses living  in the province of parma and to identify risk factors associated with seropositivity.  . materials and methods    . . horses  the study was carried out in  –  on   bardigiano horses living in   different farms of  the province of parma (figure  ).    animals  ,  ,      of      figure  . location of farms. the province of parma is highlighted by the black outline. each farm is  indicated by a circle. the number of tested animals in each farm is indicated by arabic numerals. the  proportion of positive and negative animals among the horses tested in each farm is shown in red  and green, respectively.  the farms were assigned to two different groups. the ‘mountain’ group included the farms  located in the municipalities of albareto, bardi, bedonia, berceto, borgo val di taro, compiano,  corniglio, monchio delle corti, palanzano, tornolo and varsi. the ‘valley’ group included the farms  located in the municipalities of colorno, fidenza, lesignano de’ bagni, medesano, montechiarugolo,  noceto, parma, salsomaggiore terme and salsominore. the altitude of the farms in the valley area  ranged from   to   m above sea level (mean ± standard deviation:   ±  ) and that of the farms  in the mountain area ranged from   to   m above sea level (  ±  ).  none of the animals were vaccinated against leptospirosis. the sample size required to estimate  the prevalence of leptospira in horses was determined to be at least   horses (population size  ,  data provided by the breeders’ association of the province of parma). the expected prevalence was  %. the value of the expected prevalence was established on the basis of the higher leptospirosis  seroprevalence value reported in surveys carried out on horses in italy and available at the time of  study planning [ , ]. the accuracy and confidence level were  % and  %, respectively. animals  were selected by stratified systematic randomization. stratification was based on the type of housing.  . . sampling  blood samples were collected by venipuncture of the jugular vein into   ml tubes (vacutainer,  becton dickinson) without anticoagulant, kept at refrigeration  temperature and delivered  to  the  laboratory within the same day. each serum was immediately separated by centrifugation at   g  and stored at −  °c until  it was analyzed. blood sampling was conducted  in compliance with  national  (decreto  legislativo  n.  / ,  art.  )  and  european  (directive  / /eu)  laws  and  policies regarding the protection of animals used for experimental and other scientific purposes.  moreover, the present project was approved by the ethical committee of the university of parma  (organismo  preposto  al  benessere  degli  animali—prot.  n.  /ce/ ).  for  each  animal,  an  animals  ,  ,      of    anamnestic form was completed at the time of sampling to obtain information regarding horse’s sex,  age, medical history and health status (with particular reference to the clinical signs attributable to  leptospirosis, such as abortion and still births, uveitis, fever, kidney disease and jaundice), in addition  to farming conditions. the form also contained questions concerning the presence of other domestic  or wild animals that could come in contact with the horses, either directly or through the sharing of  grazing pastures. finally, the presence of integrated pest control management was investigated.  . . serology  a  microscopic  agglutination  test  (mat)  was  performed  using  a  panel  of  seven  leptospira  serovars (serogroup australis, serovar bratislava; serogroup canicola, serovar canicola; serogroup  icterohaemorrhagiae,  serovar  copenhageni;  serogroup  grippotyphosa,  serovar  grippotyphosa;  serogroup sejroe, serovar hardjo; serogroup pomona, serovar pomona; serogroup tarassovi, serovar  tarassovi). leptospira strains were cultured in liquid emjh medium (becton dickinson) for three– four days at   °c (to a density of approximately  –  ×   leptospires per ml) and diluted  :  in sterile  saline. all sera were  first screened at  :  dilution by adding   l of  the diluted leptospira  suspensions  to    l  of  each  serum  previously  diluted  :   in  sterile  saline.  after  four  hours  incubation at   °c [ ],  –  l of each suspension was transferred on a slide and examined under  a dark field microscope (eclipse  i, nikon) at  × magnification. sera that gave a positive reaction  were further titrated in serial two‐fold dilutions, starting from  :  to titre end‐point. antibody titres  were expressed as the reciprocal of the highest dilution of serum that gave  % or more of reduction  of free leptospires in the suspension, compared to a negative control obtained by using sterile saline.  a positive reaction of a serum against all serovars would be considered non‐specific. a titre ≥    was deemed positive, i.e., indicating leptospira exposure or infection.  . . statistical analysis  statistical analysis was performed using the chi‐squared test. p values lower than  .  were  regarded as statistically significant.  . results  ninety horses from   different farms exhibited positive mat titres to one or more serovars of  leptospira at a serum dilution of  : . this means that  . % ( % confidence interval  . – . ) of  the animals and  . % ( % ci  . – . %) of the farms were positive. clinical signs compatible with  leptospirosis were recorded in two horses. one presenting uveitis and the other one having had an  abortion. the horse with uveitis was seronegative, while the animal who had an abortion was positive  to serovars bratislava and canicola. the highest number of positive animals was  found  for  the  bratislava serovar, followed by canicola, tarassovi, copenhageni, pomona and hardjo (table  ). no  animals were found positive for the serovar grippotyphosa.  table  . distribution of mat antibody titres for each leptospira serovar.  serovar  number of positive animals for each  antibody titre  number of positive  animals/overall (%)              bratislava              /  ( . )  canicola              /  ( . )  copenhageni              /  ( . )  grippotyphosa              /  ( )  hardjo              /  ( . )  pomona              /  ( . )  tarassovi              /  ( . )  total                animals  ,  ,      of    forty‐six point seven percent ( / ) of the seropositive horses reacted against a single serovar  and  . % ( / ) was found to be positive to multiple serovars (table  ).    table  . number of animals with single or multiple seropositivity.  number of serovars to which  the animal was positive  animals/overall number of positives (%)    /  ( . )    /  ( . )    /  ( . )    /  ( . )    /  ( . )    /  ( )    /  ( )  the highest frequency of multiple positivity was detected against the pair of serovars canicola  and tarassovi, followed by bratislava–canicola and copenhageni–tarassovi pairs, which showed  the same value (figure  ).    figure  . multiple seropositivity. the number of positive animals for each pair of serovars is reported.  serovar pairs are indicated by the name on the abscissa and the color of the bar.  most of the mat titres were relatively low. the highest titer was   and the modal titer was    (table   and figure  ). among the seropositives,  /  ( . %) showed antibody titres greater than  or equal to  . all the seropositives with antibody titres greater than or equal to   were positive  to a single serovar. in particular,   towards bratislava, four towards canicola and one towards  pomona. the bratislava serovar was also the one that gave the highest antibody titres: out of    bratislava positive sera with values ≥ , seven reacted with antibody titer equal to   (table    and figure  ).  animals  ,  ,      of      figure  . heat map of seropositivity to the different serovars.  animals  ,  ,      of    the results for potential risk factors are shown in table  .  table  .  distribution  of  seroprevalence  for  leptospira  spp.  by  demographic,  geographic  and  management factors.  potential risk factor  tested  animals  positive  animals  seroprevalence  (%)  % ci    age          –  years      .   . – .   –  years      .   . – .   –  years      .   . – .   sex          female      .   . – .   male      .   . – .   gelding      .   . – .   location of the farm          mountain      .   . – .   valley      .   . – .   rodent control          yes      .   . – .   no      .   . – .   housing          box or paddock      .   . – .   free ranging      .   . – .   presence of other domestic  animals            yes      .   . – .   no      .   . – .   presence of wild animals            yes      .   . – .   no      .   . – .    confidence interval.   reported domestic animals: cats, dogs, goats, poultry and pigs.   reported  wild animals: deer, foxes, roes, wolves, wild boars.  a statistically significant higher seroprevalence was detected with increasing age (p =  . ). no  significant difference of seroprevalence was detected between  –  and  –  year‐old animals (p =  . ). statistical significance further increases (p =  . ) by comparing the group of all adult animals  ( –  years old) with the group of young animals ( –  years old). similarly, a significantly higher  seroprevalence (p =  . ) was found for horses belonging to farms without rodent control programs  compared to those belonging to farms in which preventive measures against rodents were taken.  comparing  free ranging horses with  those kept  in a box or paddock, no statistically significant  difference  was  observed  (p  =  . ).  the  different  seroprevalence  between  horses  within  the  ‘mountain’ group and  ‘valley’ group was not statistically significant (p =  . ). the presence of  domestic or wild animals did not significantly affected seroprevalence  (p =  .  and p =  . ,  respectively).  regarding  sex,  no  significant  difference  between  males  and  females  was  found,  counting stallions and geldings separately (p =  . ) or grouping them together (p =  . ).  . discussion  the prevalence and impact of leptospirosis in horses remain unclear, especially in european  countries  [ ].  the  incidence  of  the  disease  and  the  serovars  involved  vary  according  to  the  geographical area [ , ]. horses are not commonly considered a possible source of  leptospirosis  diffusion compared to other livestock and wild animals. however, horses may harbor leptospires in  the kidney, becoming carriers and causing the spread of the bacterium in the environment [ ]. the  animals  ,  ,      of    present  study  assessed,  using  the  mat,  the  prevalence  of  antibodies  against  seven  serovar  of  leptospira in bardigiano horses living in the province of parma. we found that  . % of the animals  exhibited positive mat titres to at least one serovar and  . % of positive horses had antibodies  against more serovars. seropositivities to more serovars may be due to multiple infections or to cross‐ reactivities. since all the horses involved were not vaccinated against leptospirosis, we concluded  that  the  detection  of  antibodies  was  indicative  of  leptospira  exposure  or  infection.  the  high  seroprevalence of leptospira spp. found in bardigiano horses is in agreement with other europeans  reports. seroprevalences of  . % and  % were  found  in switzerland and  in  the netherlands,  respectively [ , ]. in a brazilian study, the percentage of seropositivity was  . % [ ] and a recent  study carried out in some states of the american midwest reported a  % seroprevalence in healthy  horses [ ]. surprisingly, a group of italian researchers [ , ] reported a seroprevalence of  . %  and  . %, respectively. ebani et al.  ( ) ascribed  the results of  their study  to  the  type of  the  environment. the horses included in their study lived in areas with a low presence of stagnant water  and under good management conditions. the hydrologic density is recognised to be a risk factor [ ].  the  territory  of  the  province  of  parma  belongs  to  a  geographical  area  different  from  the  one  considered by ebani et al. ( ). in fact, it is included in the padanian hydrographic district, which  is characterized by rainfall and water runoff values higher than all other italian hydrographic districts  (report of the national statistical institute—giornata mondiale dell’acqua,  . available online:  https://www.istat.it/it/files// / /statistiche‐sullacqua.pdf).  the considered territory is crossed by several rivers and numerous channels for water flow  regulation. moreover, the climate of the po valley is characterized by high humidity compared to  other part of italy. furthermore, in the study of cerri et al. ( ), a cut‐off of   was used to consider  a serum positive and this reduces the prevalence value compared to a cut‐off of  . a   cut‐off is  useful to reduce possible cross‐reactions and vaccinal antibodies interference [ ]. however, in this  study, antibody interference by vaccination could be excluded as none of the horses were vaccinated  against leptospirosis. several years later, another italian study reported a seroprevalence of  . %  with a   cut‐off value [ ]. this last study was a nationwide serological survey involving   horse  sera collected by all   italian istituti zooprofilattici sperimentali (iizzss) between   and  .  another very recent study reported a seroprevalence of  . % with a   cut‐off value [ ]. in this  case, only   horse sera collected  in north‐central italy  in the period  –  were tested. in  accordance with literature data [ , , , , ], in this study, bratislava was the serovar showing the  highest prevalence of mat positive reactions. serovar bratislava is considered by most researchers  to be the host‐adapted serovar in the horse and horses may also act as maintenance hosts [ – ].  twenty‐one horses exhibited antibody titres ≥   to serovars bratislava, canicola and pomona.  bratislava was the serovar with the highest mat titres. it might be unusual for an host‐adapted  serovar, but not completely unexpected [ ]. in endemic areas, titres ≥  –  in the presence of  compatible symptoms may be considered indicative of leptospirosis [ ]. all horses involved in this  study did not show clinical signs attributable to leptospirosis, except for two subjects in which uveitis  and abortion were reported. in both cases, the origin of the disorder could not be established. the  horse with uveitis was seronegative to all serovars tested. however, the involvement of leptospira  cannot  be  excluded  since  it  has  been  proved  that  serology  alone  may  not  be  able  to  diagnose  leptospira‐associated uveitis [ , – ]. interestingly, there were no seropositive animals for serovar  grippotyphosa. while this serovar occurs sporadically  in horses,  it  is considered to be the most  common serovar associated with eru in europe [ ]. the horse that aborted was seropositive and  antibody titres were   against bratislava and   against canicola. therefore, the involvement of  one of these serovars in that abortion cannot be excluded. the results are thus in agreement with  those reported by different authors: seropositive or infected horses are, in most cases, asymptomatic  [ , ].  our data show a significatively higher seropositivity to leptospira spp. in adult horses compared  to young horses. this result is in agreement with data reported by other authors [ , , ] and could  be explained considering that the probability of coming into contact with leptospira increases with  increasing age and that the seropositivity can persist for a long time. however, other authors have  animals  ,  ,      of    found no significant association between seropositivity and age [ ]. contrarily to what was reported  by other studies [ , , , ], in this survey, sex differences were not significantly associated with  seropositivity. the province of parma is characterized by mountains to the south‐west and plains to  the north‐east. free‐ranging horses cannot pass from one area to the other, due to the anthropization  of the territory which limits the movement of these animals. therefore, the location of the farms was  also evaluated as a potential risk factor. the location of farms in the valley or in the mountain areas  did not significantly affect seroprevalence values. this result could be partly explained by the fact  that, despite the orographic differences, all the territory of the province of parma is in the same  hydrographic area. all the rivers that cross the territory come from the apennine range and flow in  a north‐east direction up to the po river. it is interesting to note that only two of the   farms included  in the study were completely negative, suggesting a wide dissemination of pathogenic leptospires in  the considered area. blatti et al. ( ) have hypothesized that the higher seroprevalence detected in  ponies compared to horses could be related to the longer time spent grazing by ponies. a similar  hypothesis was made by other authors to explain the higher prevalence of leptospiral antibody rate  in donkeys compared to horses [ ]. however, this study shows that in bardigiano horses, the risk of  infection is the same regardless of the time the animal spent grazing, turned out or housed in the  stable during the year. the role of the type of housing in leptospira spp. transmission could be hidden  by the presence or absence of rodents, which represent a major risk factor for leptospira prevalence  [ , ]. rodents are probably the predominant type of wildlife in the horsesʹ indoor environment and  the  density  of  the  rat  population  was  positively  associated  with  the  prevalence  of  leptospira  interrogans  [ ].  the  presence  of  pest  control  measures  significantly  reduced  the  chance  for  bardigiano horses getting the infection. although the role of rodents in transmission of leptospiral  serovars can sometimes be difficult to evaluate [ ], rodent control is considered an important factor  for prevention [ , ] and our data confirm this notion. in this study, the presence of other domestic  animals did not significantly affect the seroprevalence. domestic animals were mostly dogs, cats and  poultry. pigs act as maintenance hosts of serovar pomona [ ]. their presence was reported in only  one farm with the horse living there being negative for all tested serovars. on the other hand, all  bardigiano horses positive to serovar hardjo, whose maintenance host is cattle [ ], were nearby or  in a cattle farm.  . conclusions  this study revealed a high seroprevalence against leptospira spp. among bardigiano horses and  a  high  number  of  infected  farms.  seroprevalence  was  considerably  higher  compared  to  similar  studies carried out in italy [ , , ]. horses living in the considered area, therefore, have high risk  exposure to pathogenic leptospires. however, anamnestic data suggested that in bardigiano horses,  the infection is mostly subclinical. in agreement with other authors [ ], this study showed how  improving some management practices, especially rodent control, might reduce the risk of exposure  for horses and hopefully, for humans.  author contributions: conceptualization, f.q., s.t. and e.v.; methodology, s.t. and e.v.; validation, s.c. and  s.t.; formal analysis, s.t.; investigation, m.a., c.s.c., e.s., j.s., s.t. and e.v.; resources, all authors; data curation,  j.s., s.t. and e.v.; writing—original draft preparation, s.t. and e.v. with support from f.q.; writing—review  and editing, all authors; visualization, s.t.; funding acquisition, s.c. and f.q.  funding: this research was funded by a research fund from the university of parma (s.c.‐fil  ) and by  personal research funding (f.q.).  acknowledgments: the authors gratefully acknowledge the associazione provinciale allevatori of the province  of parma for providing data on bardigiano horses and the breeders involved in the study. this research did not  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article distributed under the terms and conditions of the creative commons attribution  (cc by) license (http://creativecommons.org/licenses/by/ . /).    running head: refractory eating disorders in youth refractory eating disorders in youth: an examination of predictors, profiles and growth trajectories nicole obeid thesis submitted to the faculty of graduate and postdoctoral studies in partial fulfillment of the requirements for the degree of doctor of philosophy (phd) in psychology school of psychology faculty of social sciences university of ottawa © nicole obeid, ottawa, canada, refractory eating disorders in youth acknowledgements i would like to thank my supervisor, dr. john lyons, for his guidance, expertise and thoughtful mentorship throughout this journey. his feedback, encouragement, method of teaching, as well as ongoing support and belief in his students has truly shaped my academic mind. i would also like to thank the members of my thesis committee, including dr. katherine henderson, dr. george tasca, dr. barry schneider, and dr. jennifer coelho, who have all provided me with much valued feedback and guidance. a special thank-you goes to drs. henderson and tasca who provided unique expertise relevant to the subject matter. i consider myself lucky to have learned from two leading experts in this field. i am also very grateful to the children’s hospital of eastern ontario eating disorder program for their ongoing support of my research. this would not have been possible without your ongoing care and impeccable treatment of these youth. finally, i would like to sincerely thank my family, abdallah, mariane, caroline, alma, mark and david, for their generous support, unwavering belief, and patience throughout this process. i would not be the person that i am today without you all. and lastly, but most especially, i would like to thank my loving husband, cory, for his strength, incredible patience, and selfless giving during this time. words cannot describe how truly thankful i am to you all. refractory eating disorders in youth table of contents refractory eating disorders in youth: an examination of predictors, profiles and growth trajectories ............................................................................................................ acknowledgements ..................................................................................................... table of contents ........................................................................................................ list of tables .............................................................................................................. list of figures ............................................................................................................. general introduction ........................................................................................................... what is an eating disorder? ......................................................................................... refractory eating disorders ......................................................................................... theoretical mechanisms of refractory eating disorders ............................................. objectives of current study.......................................................................................... references ..................................................................................................................... study : predictors of refractory eating disorders in a clinical sample of adolescents ....................................................................................................................... abstract ......................................................................................................................... introduction ................................................................................................................... methods......................................................................................................................... participants ................................................................................................................ description of eating disorder program ................................................................... assessment measures ............................................................................................... procedures ................................................................................................................. refractory eating disorders in youth analytic plan ............................................................................................................. results ........................................................................................................................... discussion ..................................................................................................................... references ..................................................................................................................... table .......................................................................................................................... table . ......................................................................................................................... study : identifying profiles of refractory cases in adolescents with eating disorders: a latent profile analysis.................................................................................................. abstract ......................................................................................................................... introduction ................................................................................................................... methods......................................................................................................................... participants ................................................................................................................ description of eating disorder program ................................................................... assessment measures ............................................................................................... procedures ................................................................................................................. analytic plan ............................................................................................................. results ........................................................................................................................... descriptive statistics ................................................................................................. initial intake assessment data.................................................................................. residual change score data ..................................................................................... comparison of classifications ................................................................................... discussion ..................................................................................................................... limitations ................................................................................................................ refractory eating disorders in youth future directions ...................................................................................................... references ..................................................................................................................... table .. ...................................................................................................................... table . ....................................................................................................................... table . ....................................................................................................................... table . ....................................................................................................................... table . ....................................................................................................................... study : growth trajectories of maintenance variables related to refractory eating disorders in youth .......................................................................................................... abstract ....................................................................................................................... growth trajectories of maintenance variables related to ......................................... refractory eating disorders in youth ........................................................................ methods....................................................................................................................... participants .............................................................................................................. description of eating disorder program ................................................................. assessment measures ............................................................................................. procedures .................................................................................................................................................. analytic plan ........................................................................................................... results ......................................................................................................................... descriptive statistics ............................................................................................... confirmatory factor analysis of summary maintenance variable ....................... growth curve trajectories ..................................................................................... refractory status as a predictor of variability in growth curves.......................... refractory eating disorders in youth discussion ................................................................................................................... limitations .............................................................................................................. future directions .................................................................................................... conclusions ............................................................................................................. references ................................................................................................................... table .. ...................................................................................................................... table . ....................................................................................................................... table . ....................................................................................................................... figure .. ..................................................................................................................... figure . ...................................................................................................................... general conclusion ......................................................................................................... references ................................................................................................................... refractory eating disorders in youth list of tables study : predictors of refractory eating disorders in a clinical sample of adolescents table . means (sd) and reported ranges for all predictors separately for single- episode and refractory groups ....................................................................................... table . sequential logistic regression of refractory status predicted by ed related refractory and maintenance variables ........................................................................... study : identifying profiles of refractory cases in adolescents with eating disorders: a latent profile analysis table . descriptives of latent class indicators across full sample ............................. table . results of latent profile analysis of intake assessment data ..................... table . means, standard errors, and anova results for the latent class indicators for initial assessment data ................................................................................................. table . results of latent profile analysis with residual change scores ................ table . means, standard errors, and anova results for the latent class indicators for residual change scores across the first treatment encounter…………………...……. study : growth trajectories of maintenance variables related to refractory eating disorders in youth table . means and standard deviations of indicator variables divided by timepoint table . growth curve estimates for the summary maintenance factor ..................... table . growth curve estimates for the summary maintenance factor with refractory status as a time-invariant predictor ............................................................................. refractory eating disorders in youth list of figures figure . standardized estimates of the measurement model for the summary maintenance factor. ..................................................................................................... figure . growth curve pattern of summary maintenance factor for full sample....... refractory eating disorders in youth refractory eating disorders in youth: an examination of predictors, profiles and growth trajectories eating disorders (eds) are known as a debilitating group of disorders that are especially prevalent in female adolescents and young women (fairburn, cooper, doll, norman, & o’connor, ; goni & rodriguez, ; lewinsohn, striegel-moore, & seeley, ). what was once viewed as a disorder exclusively affecting caucasian upper-middle class young women from western countries is now spreading across all demographics, crosscutting genders, ethnicities, and developmental periods (french, story, remafedi, resnick, & blum, ; neumark-sztainer, story, falkner, beuhring, & resnick, ). anorexia nervosa (an) has been named as one of the greatest mental health concerns for young people, with strong evidence showing that adolescents are at greatest risk for the onset of this disorder often in relation to the commencement of puberty (bryant-waugh, ; lock & gowers, ). some of this concern is due to an being cited as the psychiatric illness with the highest mortality rate either due to medical complications or suicide (reijonen, pratt, patel, & greydanus, ). eating disorders rank as the third most common chronic illness among adolescent females (fisher et al., ), and have been ranked by the world health organization as one of the priority mental illnesses for children and youth (world health organization, ). equally troubling is that eds have been described as being ‘high-priced’ both in terms of healthcare dollars and in mortality rates (krauth, buser, & vogel, ; simon, schmidt, & pilling, ; striegel-moore, leslie, petrill, garvin, & rosenheck, )- a concern that persists well past adolescence. with reviews of long-term outcome studies finding a poor recovery rate of just % (steinhausen, ), the need to understand refractory eating disorders in youth adolescent eds and their outcomes is imperative, as this group of disorders is plagued with a debilitating and long mental and physical course of illness. eating disorders are known for their chronic and relapse-ridden course (fairburn et al., ; lewinsohn et al., ). the cyclical nature of these disorders poses not only grave physical and mental health risks for the sufferer (goldstein et al., ), it also presents serious challenges for the treating professionals (strober, ) and places a high demand and cost on the health care system (richard, bauer, & kordy, ). in spite of extensive research, no reliable predictors of long-term eds have been identified (strober, ) in either adult or adolescent populations, nor have treatments emerged that are specifically targeted towards treating those with a long-term ed. with gross estimates suggesting that one out of three individuals will suffer from a lengthy course of the illness (richard et al., ), the prognosis for those diagnosed with an ed is compromised. thus, it is fundamental to understand who is at risk and what factors are involved in long-term eds, as the clinical and treatment implications gleaned from this evidence could be quite impactful. the current project will include three studies that will explore long-term eds in a large transdiagnostic sample of adolescents with an ed. it will also attempt to overcome methodological limitations associated with past studies of this type (salbach-andrae et al., ), and apply an operational definition of this course of illness that may provide a more reliable and valid method with which to identify these cases. as such, the use of the term refractory ed, defined as a return to same-type treatment, will be applied to best identify this group. reasons and theoretical underpinnings for use of this definition will be explained. together these three studies will fill a significant gap in the literature on refractory eating disorders in youth refractory course of illness in pediatric eating disorders. these studies will provide long overdue information on predictors, profiles and growth trajectories of those adolescents who suffer from a refractory course of an ed. what is an eating disorder? there are three main categories of eating disorders found in the dsm-iv (american psychiatric association, ): an, bulimia nervosa (bn), and eating disorders not otherwise specified (ednos). both an and bn share the characteristics of disturbance in weight or shape perception and undue influence of weight and shape on the evaluation of oneself (american psychiatric association, ). the two disorders differ in that an is primarily identified by a refusal to maintain one’s weight above % of an individuals’ ideal body weight for their age and gender, as well as the absence of at least three consecutive menstrual cycles (females only). meanwhile, the primary characteristic of bn is recurrent binge eating followed by some method of compensation, which occurs at a frequency of at least twice weekly for three months. prevalence rates of an are estimated to occur in . to . % of young females and adolescents (american psychiatric association, ; lucas, beard, o’fallon, & kurland, ) and in approximately % of males, while the prevalence rates of bulimia nervosa are reported at to % in young females (wilson, becker, & heffernan, ) and . % in males (hudson, hiripi, pope, & kessler, ). the third category of eating disorders, ednos, usually refers to those individuals who do not meet the stringent criteria for an or bn (kohn & golden, ). although no formal agreed upon prevalence rates are available for this subgroup, some evidence has suggested rates of . % for females (hudson et al., ), while a recent refractory eating disorders in youth international study demonstrated that ednos is the most common ed encountered by health care professionals in routine clinical practice (fairburn & bohn, ). others have shown that ednos is an especially common diagnosis in adolescents (commission on adolescent eating disorders, ), and that it carries the same severity of illness equivalent to that of an or bn (fairburn & bohn, ). this diagnostic category is also characterized as heterogeneous in terms of the presentation characteristics of those with ednos (eddy, doyle, hoste, herzog, & le grange, ), thus increasing the difficulty of studying this subgroup as a whole. due to the heterogeneity of ednos, very limited research has been conducted on this large diagnostic category in adults and youth. empirically tested and evidence-based treatments for youth with eds are scarce. at the current time, only family-based treatment (fbt) based on maudsley principles (lock & le grange, ; lock & fitzpatrick, ) has been studied and found to be effective in clinical samples of youth with an (e.g. lock, agras, bryson, & kraemer, ). cognitive-behavioural approaches for an have also been applied and tested with some success (e.g. garner, vitousek, & pike, ), although arguably, very limited evidence exists for adolescent populations. treatment approaches for bn differ from those that have been postulated for an patients. in adult studies, two common treatment modalities have been cognitive-behavioural (cbt) and interpersonal therapy (ipt). a manual-based cbt approach has been shown to be superior to other psychological treatments in the short-term (wilson & fairburn, ), and successes with a group- based approach have also been demonstrated (chen, touyz, beumont, fairburn, griffiths, butow, et al., ). similarly, ipt has also been shown to have some favourable treatment effects for those with bn (fairburn, jones, peveler, hope, & refractory eating disorders in youth o’connor, ). although several treatment approaches for eds are available, very limited evidence exists that demonstrates the effectiveness of these treatments at targeting the chronicity of the disorder. other characteristics of the eds, is that outcome studies reveal a poor long-term prognosis. in the adult ed literature, published relapse rates vary from % (e.g. olmsted, kaplan, & rockert, ) to % (field et al., ). in a review of studies of an patients followed for years or longer, only . % made a full recovery, . % reported residual symptoms, . % remained severely ill and chronic, and . % died of an related causes (steinhausen, ). the prognosis for those with bn presents with a similar picture, with estimates of % to % attaining remission (ben-tovim et al., ; fichter & quadflieg, ; grilo et al., ; herzog et al., ; keel, dorer, franko, jackson, & herzog, ). in a review study of bn samples, studies with a follow-up period ranging from to years revealed recovery rates of just over % (keel & mitchell, ). what is notable when reviewing the evidence on long-term outcomes of eds, is the wide range of relapse rates presented in the literature. the large discrepancies in relapse rates have been credited to several reasons. some have attributed it to the different operational definitions for recovery, relapse, or remission (quadflieg & fichter, ; steinhausen, ; walsh, ), whereas others have attributed it to the varying follow-up periods studied spanning months to years (e.g. salbach-andrae et al., ; strober, freeman, & morrell, ), the small sample sizes, and the diagnostic and sampling heterogeneity of the samples (holle et al., ). similarly, comparisons across different treatment techniques or orientations, as well as comparing treatments of refractory eating disorders in youth differing lengths and intensities, might also be contributing to these discrepancies. much work is still needed to achieve a consensus on how best to identify and label those with a long-term ed. refractory eating disorders there has been a significant historical progression in the operationalization of a long-term ed, mostly related to what defines recovery of this disorder. originally, recovery was defined to include only medical or physical indices such as weight and menstrual status (as apparent from morgan-russell’s original criteria; morgan & russell, ), then the addition of behavioral indices (i.e. abstinence from binge eating, restricting, purging) were included in the definition to represent the multidimensionality of the disorder (bulik, sullivan, fear, & pickering, ; strober et al., ). now, these definitions have progressed to include psychological measures such as body image concerns and fear of gaining weight (bachner-melman, zohar, & ebstein, ; couturier & lock, ). a recent study designed to define adolescent an recovery has demonstrated that both weight and psychological symptoms seem to play equal roles in defining recovery (couturier & lock, ). it also found that physical recovery typically occurs prior to psychological recovery. in this study of adolescents with an, the researchers found that the mean time for physical recovery was . months, whereas the mean time for psychological recovery was . months. further studies have also confirmed that recovery of physical symptoms almost always occurs prior to psychological recovery (e.g. fichter, quadflieg, & hedlund, ; strober et al., ). the lack of consistent indices of recovery that span the current literature further complicate our understanding and ability to predict this type of course of illness, and refractory eating disorders in youth have led to inconsistent recovery rates depending on whether behavioural, cognitive, and/or psychological indices were applied. differences in the length of follow-up periods used when studying long-term outcomes of eds, have led to conflicting results. for example, a study that was focused on short-term outcomes of adolescent an reported that year following discharge from a specialized ed inpatient program based primarily on a cognitive behavioural approach, . % of the cases were fully recovered, . % had some residual symptoms, and . % had poor outcomes (salbach-andrae et al., ). comparing this to a recent large european collaborative project that tracked over individuals with either an or bn, who received psychotherapeutic and psychodynamic treatment in a hospital-based setting for . years (richard et al., ) provides different results. this study reported relapse rates of . % for an and . % for bn after . years. yet in a longer-term large adult study, % with an and % with bn were considered recovered at the year follow- up, whereas recovery rates increased to % and % for an and bn respectively after years (holle et al., ), although there is no mention of the type of treatment received. taken together, these studies suggest a poor course of illness, with many relapsing even years after disease onset. more importantly, the mixture of results from these studies differ due to the difference in length of follow-up periods that were investigated, therefore operational definitions of this course of illness should avoid needing to depend on a timeframe in order to classify individuals who have relapsed. other contributory factors to the mixed and sometimes contradictory evidence are the length of time that symptom abatement must occur for recovery to be considered and the lack of transdiagnostic studies. to date, there are no consistent guidelines as to how refractory eating disorders in youth much time qualifies as a period of recovery. duration of symptom abatement has ranged from weeks to years (bachner-melman et al., ; herzog et al., ; holle et al., ; kordy et al., ), likely contributing to the vast discrepancies in recovery rates. furthermore, the majority of this literature has mostly concerned individuals with an or bn. only one study was found that examined a transdiagnostic adult sample of eds (mcfarlane, olmsted, & trottier, ). even more troubling is that there is no research examining recovery rates or relapses in adolescents who present with a diagnosis of ednos, despite the fact that this ed category is the one most often diagnosed in the adolescent population (commission on adolescent eating disorders, ). in reviewing the many terms and concepts that have been used throughout the literature to delineate poor long-term outcomes in the eds, it becomes apparent that there is no clearly agreed upon nomenclature to describe this illness course. recovery and remission remain somewhat subjective and have historically been poorly defined. the concept of relapse also has inconsistent definitions that vary according to the length of the follow-up period observed and the definition of recovery used. the term rehospitalization usually refers to only those with an who typically require inpatient hospitalization, and does not lend to other treatment modalities or ed categories. this array of terms that share some overlap but also many subtle differences, highlights that fact that there is no consensus in the nomenclature and definition of this type of illness course. in order to overcome many of the limitations described with regards to an operational definition of this subgroup of patients, the current project will use a concrete definition that does not depend on the current definitional issues related to recovery or refractory eating disorders in youth relapse. while the operational definition can be focused on who recovers, it is also possible to focus the operational definition on return to same-type treatment. focusing on the latter allows us to accurately identify a subgroup that is refractory or treatment- resistant, regardless of how recovery is defined, as those who merit return to the same type of treatment have undoubtedly experienced a return of the ed. this method will provide a more reliable and valid method of identifying those with a refractory course, without needing to depend on operational criteria for recovery that have not yet been established or agreed upon by researchers and clinicians in this literature. theoretical mechanisms of refractory eating disorders only a few theories relating to refractory eds have been proposed to date. fairburn and colleagues’ (fairburn, cooper, & cooper, ) cognitive-behavioural model for bulimia nervosa is among the first eating pathology maintenance model that has been proposed and empirically tested (byrne & mclean, ; fairburn et al., ). this model posits that eating, weight and shape over-concern and evaluation is the primary maintaining factor in binge eating. the model further contends that binge eating in turn leads to the use of extreme compensatory behaviours in pursuit of the thin ideal. in this fashion, dieting is conceptualized to act as a mediator between appearance over- evaluation and bulimic symptoms, providing a maintenance factor to the disordered eating. the term maintenance factor is often cited in this literature as those factors thought to help maintain a disease state. stice ( ) defined this term as a factor that predicts symptom persistence versus symptom remission. he further provided a meta- analytic review of risk and maintenance factors involved in eating pathology (stice, refractory eating disorders in youth ). in his review, he found support for four maintenance factors of eating pathology, although mostly described for those with bn. he describes these factors as a) thin ideal internalization, b) body dissatisfaction, c) negative affect, and d) perfectionism. in , developers of the cognitive behavioral-maintenance model for bn expanded and enhanced their model to allow it be ‘transdiagnostic’ in nature and to include four additional maintenance factors (fairburn, cooper, & shafran, ). according to their new transdiagnostic theory of the maintenance of eds, one or more of the four additional maintenance factors interact with the original core eating disorder pathology factors (over-evaluation of eating, shape and weight and their control) and this interaction acts as an obstacle to change for certain individuals. the four additional maintenance factors that these authors propose concern: core low self-esteem, interpersonal difficulties, perfectionism, and mood intolerance. in addition, this model was conceptualized to apply to all three major eds, as an, bn, and ednos are theorized to share the same distinctive psychopathology, and evidence suggests that patients migrate between these diagnostic states over time (tozzi et al., ). empirical support for this model as a transdiagnostic theory is available in adult populations (lampard, byrne, mclean, & fursland, ; tasca et al., ), and in a community- based adolescent sample of binge eating disorder (allen, byrne, & mclean, ). no research to date has investigated this model in a clinical sample of adolescents with eds. another theory that has been proposed in an attempt to define debilitating eds that are chronic in nature, is what robinson ( ) introduces as seeds- serious and enduring eating disorders. a seed is defined as those with a minimum ed chronicity of years who display ongoing chronic and compromising symptomatology. robinson refractory eating disorders in youth ( ) suggests that there are different subtypes of seeds; those who are truly treatment-resistant (i.e. do not respond to treatment), those with chronically low weights and ed related issues but who respond to treatment, and those who experience brief periods of partial remission of symptoms intermingled with multiple serious relapses. although this term is intended to capture and systematically define those suffering from a chronic ed, to date this term is not widely used in the ed literature, nor has its applicability to youth samples been established due to its duration of illness criteria. nonetheless, the seed subcategories are the first attempt in the ed literature to differentiate between different types of refractory eds. the current project will examine whether it is warranted to subcategorize those with refractory eds into some of the profiles described above, and if these categories are applicable to youth samples. objectives of current study the current project will examine refractory eds in a large transdiagnostic adolescent sample. it will build on previous work by investigating in a cross-sectional and longitudinal fashion, several biopsychosocial characteristics of refractory eds in this population. specifically, this project will explore how characteristics at presentation for an initial intake assessment, progression across the first treatment encounter, and the trajectories over treatment and follow-up periods are related to predicting and understanding refractory eds in adolescents. in addition, this project will be one of the first to explore a transdiagnostic adolescent sample, which given how prevalent ednos is in this age group (commission on adolescent eating disorders, ) provides a much needed comprehensive and generalizable understanding of this entire population. a further aim of this project is to examine more closely the applicability of the additional refractory eating disorders in youth maintenance factors (fairburn et al., ) to adolescent refractory eds, in order to gain a unique view and understanding of how these variables affect the course of refractory eds in adolescent populations. in order to achieve these objectives, three studies are proposed. in the first study, the aim is to examine predictors of refractory eds in an adolescent sample. this study will sequentially explore eleven theoretically-derived predictors of refractory eds, including those variables identified as the additional maintenance factors in fairburn’s and colleagues ( ) model, for their effect on the occurrence of refractory ed as defined by a return to treatment. the second study will test whether an adolescent transdiagnostic ed sample can be classified into groups or latent classes based on refractory profiles collected at the initial intake assessment or using progress data across the first intensive treatment encounter. this will provide a unique perspective of these refractory profiles, will allow for the exploration of the number of groups that are extracted, and how these indicators classify adolescents with eds across two different types of data. the ultimate goal of this study is to determine whether a refractory group can be identified from either of these types of data. the third study will explore the growth curves of the additional maintenance factor profiles in a large clinical transdiagnostic sample of adolescents with eds. the growth curves examined will span across the first treatment encounter and during month and year follow-up periods. studies examining growth trajectories of these variables have yet to be performed. examining these curves will allow for the first exploration of how these factors act across treatment and during follow-up in adolescents with and without refractory eds. refractory eating disorders in youth it is anticipated that findings from these three studies will provide important evidence regarding refractory eds in adolescence. it is anticipated that this project will demonstrate which variables are predictive of a refractory course and whether different types of refractory eds have empirical support in an adolescent sample. it will further provide information on the role of the additional maintenance variables and their relationship to refractory status, and whether identification of these types of cases is possible based on initial intake and treatment progress data. results from this line of research could lead to useful information for treatment and prevention efforts concerned with refractory eds. clinicians and treatment providers could use this information to better tailor assessment and treatment strategies, so that more effective identification and prevention of refractory eds can be 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( ). the world health report - changing history (pp. - ). refractory eating disorders in youth predictors of refractory eating disorders in a clinical sample of adolescents refractory eating disorders in youth abstract eating disorders (eds) are known as a debilitating group of disorders often described as chronic and relapse-ridden, requiring several rounds of treatment. identifying predictors of return to treatment, defined as a refractory ed, is crucial to identifying those at risk of a refractory course of illness. the purpose of this study is to examine predictors of refractory versus single-episode eds in a large clinical sample of adolescents with eds. eleven theoretically-derived variables measured at initial intake were examined. participants in this study were adolescents who received intensive ed treatment at a pediatric tertiary care hospital, where ( . %) were classified as single-episode and ( . %) were classified as refractory. a sequential logistic regression was conducted to examine the predictive ability of several ed related variables followed by the contribution of the four additional maintenance factors described in fairburn and colleagues ( ) transdiagnostic maintenance model. results indicated that a more acute onset of the ed, higher purging frequency, increased body dissatisfaction, and less depressed mood all significantly contributed to the prediction of refractory status. further, three of the four maintenance factors; ineffectiveness, interpersonal distrust, and impulsivity also contributed to the prediction of refractory status over and above the initial indicators. together, these variables significantly predicted refractory eds with an accuracy rate of . % for the single-episode group and . % for the refractory group. adolescents at-risk of suffering from a refractory ed can be identified at the initial intake assessment, therefore special attention to this set of indicators should be given. refractory eating disorders in youth predictors of refractory eating disorders in a clinical sample of adolescents commonly cited attributes associated with the eating disorders (eds) are: long- term, chronic, and relapse-ridden (fairburn et al., ; lewinsohn et al., ; michael strober, ). the cyclical and treatment-resistant nature of these disorders poses, not only, grave long-term physical and mental health risks for the sufferer (goldstein et al., ), it also presents serious challenges for the treating professionals (strober, ), and places a high demand and cost on our health care system (striegel-moore, leslie, petrill, garvin, & rosenheck, ). with gross estimates suggesting that one out of three individuals will suffer from a treatment-resistant course of illness (richard, bauer, & kordy, ), the prognosis for those diagnosed with an ed is bleak. our ability to identify individuals who might be at risk of poor long-term outcomes in eds is still in its infancy. this may be due to a lack of clarity on how to operationalize poor long-term outcomes (bachner-melman, zohar, & ebstein, ), relapse and recovery as it applies to the eds (quadflieg & fichter, ; steinhausen, ; walsh, ). although recovery, relapse, and long-term outcomes all vary in definition and operationalization across the ed literature, what is apparent from this literature is that those who return for a second or third course of the same type of treatment (i.e. hospitalization) represent those individuals who have experienced a true relapse, as their symptoms would be considered severe enough to warrant further treatment. thus, those individuals that require a return to same-type treatment can be clearly defined as having a refractory course of illness. the term refractory in medical terminology refers to those who are resistant to treatment (us national library of medicine, ). if an individual requires a second refractory eating disorders in youth round of the same-type of treatment, this theoretically equates to treatment resistance. thus, defining refractory eds as return to same-type treatment may have benefits to previous incongruent operational definitions, by allowing for the generalizability of this course of illness without complicated definitional terms related to length of symptom abatement/persistence or severity of symptoms. to date, limited work has been conducted that directly relates to identifying predictors of refractory eds as a return to same-type treatment. instead, studies and reviews have focused on identifying predictors of relapse or poor treatment outcomes (e.g. ghaderi, ), although notably, most studies have differed in their operationalization of these terms. although difficult to compare, these reports may lend some initial support for the exploration of these predictors in refractory eds. predictors that have been significantly related to relapse in adult ed patients include presence of purging symptomatology (baran, weltzin, & kaye, ; garner, garner, & rosen, ; howard, evans, quintero-howard, bowers, & andersen, ; ostuzzi, didonna, & micciolo, ), lower bmi at time of referral (hebebrand et al., ), longer duration of illness (howard et al., ; reas, williamson, martin, & zucker, ; richard et al., ), later age of onset (baran et al., ), negative attitudes regarding weight and shape (castro, gila, puig, rodriguez, & toro, ; richard et al., ), and psychiatric comorbidity (keel & mitchell, ; pike, ; salbach-andrae et al., ). a recent systematic review of treatment and disease-related outcomes (berkman, lohr, & bulik, ) adds three more relevant predictors for those with an, which are; extreme compulsive drive to exercise, a history of poor social relationships preceding onset of illness, and worse evaluation scores concerning refractory eating disorders in youth hypochondrias, paranoia, and psychopathic deviance (dancyger, sunday, eckert, & halmi, ; strober et al., ). the relevance of these constructs in predicting refractory status in adolescent samples has yet to be established, as the developmental appropriateness of these variables have not yet been studied. in addition, very few studies have explored the utility of these predictors in transdiagnostic samples. only one study to date has examined predictors in a transdiagnostic adult sample of eds (mcfarlane, olmsted, & trottier, ), which found evidence for the following significant predictors: severe pretreatment caloric restriction, presence of residual symptoms at discharge, slower response to treatment, and higher weight related self-evaluation (mcfarlane et al., ). these findings differ somewhat from those predictors found in the an or bn only adult studies, and also include progress indicators, or indicators of an individuals’ progress over treatment. of the limited studies involving adolescent ed samples, all contain an or bn samples, and no research examining adolescents who present with a diagnosis of ednos, despite the fact that this ed category is most often diagnosed in the adolescent population (commission on adolescent eating disorders, ). with so little evidence available, it is difficult to establish the applicability of these predictors to adolescents with all types of eds, as it is likely that differences will exist across diagnostic categories and developmental stages. little research investigating predictors of refractory eds in adolescent samples has been performed to date, even though the onset of eds is known to be frequent during this developmental stage (pike, ; strober et al., ). the few studies conducted in adolescent populations explored predictors of inpatient hospital readmission; with two refractory eating disorders in youth recent studies providing some preliminary work investigating refractory eds as defined by return to treatment. the first of these studies focuses on predictors of rehospitalization after total weight recovery for adolescents with an (castro et al., ). findings from this study revealed three significant predictors of readmission; young age (lower than years), abnormal eating attitudes ( or more on the eating attitudes test), and low rate of weight gain (less than grams per day). however, these results were based on a small total sample of participants, with only ( . %) of those being identified as requiring readmission. the second study of this nature was a european retrospective multisite project that examined both the course and predictors of rehospitalization in a large sample of an patients (steinhausen, grigoroiu-serbanescu, boyadjieva, neumarker, & winkler metzke, ). results indicated that paternal alcoholism, eating disorder in infancy, periodic overactivity, low weight increase during first admission, and low bmi at first discharge all significantly predicted repeated admissions at an accuracy rate of %. although the latter study builds from the previous, both studies mixed intake assessment and progress variables (i.e. those measured at the end of treatment to assess progress) within the same model, thus limiting their ability to define predictors at the outset of treatment. further, these studies are limited to patients with an, and to only one type of treatment modality (hospitalization). further work in large adolescent transdiagnostic samples involving different types of treatment modalities is needed to fully understand which predictors are involved in adolescent refractory eds so that more effective identification and treatment of these cases may be possible. another line of research relevant to refractory eds are studies examining maintenance variables. stice ( ) defined maintenance variables as factors that predict refractory eating disorders in youth symptom persistence versus symptom remission. he conducted a meta-analytic review of risk and maintenance factors found to be involved in eating pathology (stice, ), and found support for four maintenance factors for bn pathology: a) thin ideal internalization, b) body dissatisfaction, c) negative affect, and d) perfectionism. in , fairburn and colleagues (fairburn, cooper, et al., ) expanded on their original cognitive-behavioral maintenance model for bn (fairburn et al., ) to allow it be transdiagnostic in nature and to include four additional maintenance factors. according to their new transdiagnostic theory, one or more of the four additional maintenance factors (core low self-esteem, interpersonal difficulties, perfectionism, and mood intolerance) interact with the original three core eating disorder pathology factors (over-evaluation of eating, shape and weight and their control) and together they act as an obstacle to change for certain individuals. based on this theoretical definition, this directly implicates the additional maintenance variables in refractory eds, warranting further study of the predictive value and impact on refractory eds. further, fairburn and colleagues ( ) argue that this transdiagnostic maintenance model should apply to all three major eds, as an, bn, and ednos share similar characteristics. that is, these disorders are theorized to share the same distinctive psychopathology, with evidence suggesting that patients migrate between these diagnostic states over time (tozzi et al., ). the applicability of the additional maintenance variables to understanding and predicting refractory eds, and the generalizability of this model to transdiagnostic adolescent samples is still unknown. further testing to explore and expand on the impact of these variables in pediatric refractory eating disorders in youth refractory eds are therefore needed, as this model is one of the first and only theoretically driven, transdiagnostic models applicable to refractory eds. the aim of the current study is to explore whether theoretically derived variables measured at the initial intake assessment predict the occurrence of refractory versus single-episode eds in a large transdiagnostic clinical sample of adolescents. a further aim is to investigate the predictive capabilities of the four additional maintenance factors (proposed in the transdiagnostic maintenance model, fairburn, cooper, et al., ) to detect refractory eds, while controlling for the other variables in the model. the ed related variables that will be explored include bmi, self-reported purging frequency, chronicity of symptoms at presentation, drive for thinness, body dissatisfaction, and depressive and anxiety symptoms. further, based on the additional maintenance factors specified in fairburn’s and colleagues transdiagnostic maintenance model ( ), the variables of perfectionism, interpersonal difficulties, mood intolerance, and core low self- esteem will also be investigated for their predictive value. the current study will explore the ed related variables for their predictive utility in refractory eds, hypothesizing that each ed related variable will uniquely contribute to the prediction of refractory status in this sample. next, the additional maintenance factors will be tested for their unique contribution to the prediction of refractory status over and above the ed related variables. if the additional maintenance variables are found to significantly predict refractory status, then support for the role of these variables in adolescent refractory eds can be established, and preliminary evidence for the utility of the transdiagnostic maintenance in adolescent samples will be available. refractory eating disorders in youth methods participants participants in this study consisted of adolescent who received specialized inpatient and/or day hospital treatment between january and january at the children’s hospital of eastern ontario (cheo). the overall sample consisted of females ( . %) and males ( . %) between the ages of and years, with a mean age of . years (sd= . ). all youth had a diagnosis of a moderate to severe ed, obtained by a consensus diagnosis delivered by a physician and psychologist/psychiatrist based on dsm-iv-tr criteria (american psychiatric association, ). just over half ( . %) of the sample was diagnosed with an, . % of the sample was diagnosed with bn, and exactly one third of the sample ( . %) was diagnosed with ednos. data retained for use in this study consisted of participants who met criteria for a refractory or single-episode ed. refractory eds were operationally defined as those adolescents who returned for a second course of the same type of intensive treatment or who returned for a more intensive level of treatment (i.e. completed day treatment and returned for specialized intensive inpatient treatment). single-episode cases were defined as those patients who only received one recommended treatment dose. those patients who received outpatient services exclusively were excluded from all analyses. description of eating disorder program participants of this study consisted of individuals who were treated by the regional ed program located at the children’s hospital of eastern ontario. the population treated includes children and adolescents aged to years from across the province, serving a population of approximately . million. patients are referred through refractory eating disorders in youth three channels, either via their family physician, the local emergency department, or through a provincial network. two specialized group-based intensive programs are offered: inpatient or day hospital services. both programs are group-based integrated programs primarily based on maudsley family-based treatment (fbt) principles (lock & fitzpatrick, ), wherein the parents are empowered to support their child in recovery. the program also incorporates some components of cognitive-behavioural treatment, dialectical behaviour therapy, interpersonal therapy, mindfulness, expressive arts therapy, pet therapy and yoga. day hospital program. the day hospital eating disorder program has been in operation since , and represents the first specialized partial hospitalization treatment program offered in the region. the program has a maximum capacity of youth, and operates from am to pm days per week. the typical length of program is to weeks, and approximately patients are treated each year. during the course of the program, all recipients receive group therapy, meal support, academic support, therapeutic outings, and individual and family therapy. this program is often used as a step-down treatment plan for those who successfully complete the inpatient program. inpatient program. since the formal opening of the program in january of , the inpatient eating disorder program has treated approximately to children and youth each year, with average lengths of stay ranging from to days. this group- based treatment program has six inpatient beds, allocated on a shared child psychiatric ward of a local tertiary care pediatric hospital. the main goal of the specialized inpatient program is medical stabilization, although normalization of eating, nutritional refractory eating disorders in youth rehabilitation, and reduction of comorbid symptoms is also a focus. individual and fbt are also essential to the inpatient program. assessment measures demographic data. the demographic variables age, gender, bmi, diagnosis, treatment modality, and chronicity of illness at initial intake assessment were collected from clinical charts. children’s depression inventory (cdi; kovacs, , ). the cdi is a - item, validated self-report questionnaire assessing cognitive, affective, and behavioral variables related to depression in children and adolescents. it is valid for youth between and years of age (kovacs, ). the questionnaire yields five subscales and a total score. overall, the cdi demonstrates good psychometric properties and sensitivity to clinical changes in depressive symptoms over time (kovacs, ; smucker, craighead, craighead, & green, ). it has been established as internally consistent and valid in both clinical and non-clinical samples of adolescents (kovacs, ; smucker et al., ), with internal consistency scores in the current samples estimated at . for the total score. norms and clinical cut-offs for this scale are derived based on t-scores, wherein t-scores of to are considered in the normal to borderline range, and t-scores of or greater are indicative of clinical levels of depressed mood. only the cdi total score and corresponding t-score will be retained for use in this study. multi-dimensional anxiety scale for children (masc; march, ). the masc is a -item self-report questionnaire measuring anxiety related symptoms in children between and years of age (march, ). the questionnaire yields four scales, three indices, and six subscales. overall, the masc yields good psychometric refractory eating disorders in youth data, good internal consistency (march, parker, sullivan, stallings, & conners, ), and is sensitive to clinical changes in anxiety related symptoms over time (march, ). it has demonstrated good internal consistency properties in the current sample with an alpha coefficient of . for the total score. norms and clinical cut-offs for this scale are derived based on t-scores, wherein t-scores of to are considered in the normal to borderline range, and t-scores of or greater are indicative of clinical levels of anxiety. only the total score and corresponding t-score will be examined in this study. eating disorder inventory – (edi- ; garner, ). the edi- provides a comprehensive assessment of the behavioral and psychological dimensions characteristic of eds. the edi- is a reliable and valid -item multidimensional self-report instrument that assesses characteristics of eds, with higher scores indicating more severe symptomatology and/or more pathological attitudes and cognitions. the edi- is divided into subscales and has been found to have good psychometric properties. the specific subscales and corresponding internal consistency values (derived from an adult clinical ed sample of women aged to years) for those indices to be used in the current study are: drive for thinness (. ), body dissatisfaction (. ), perfectionism (. ), impulse regulation (. ), ineffectiveness (. ) and interpersonal distrust (. )(eberenz & gleaves, ). these values provide evidence of good internal consistency for those subscales to be used in the current study. possible ranges for these subscale scores are presented in table . as has been done in previous studies (tasca et al., ), the additional maintenance model construct of mood intolerance will be measured using the impulse regulation subscale, the construct of core low self-esteem will be measured refractory eating disorders in youth using the ineffectiveness subscale, and the construct of interpersonal difficulties will be measured using the interpersonal distrust subscale score. purging frequency. to obtain a frequency of purging behavior for use in this study, the combination of items from two different self-report measures was employed. this is because prior to , the eating disorder inventory – symptom checklist (edi- sc; garner, ) was used to establish self-reports of ed related behaviors and symptoms. in this questionnaire, the item ‘how many times over the past month did you vomit’ was used to establish frequency over a one-month period. after , self-reports of ed symptoms were established using the eating disorder examination questionnaire for adolescents (edeq-a; carter, stewart, & fairburn, ). question of the measure asks respondents to indicate the number of times the individual has vomited over the past weeks for the purposes of losing weight. in order to have one measure of purging frequency, the monthly estimates from the edi-sc were divided by two and then merged with the edeq-a scores to create a frequency measure of purging across a - week span. although no evidence exists that supports the accuracy or validity of this method to obtain an estimate of purging frequency, self-report measures of frequency of symptoms are almost always retrospective and therefore open to more reporting error. thus, combining these reports in this fashion was not considered a threat to the integrity of this data. procedures this study consists of secondary use of clinical data retrieved with permission from the eating disorder program at cheo. one of the clinical components of the program is the use of psychometric measures to aid in evaluating the patient’s recovery refractory eating disorders in youth over time. batteries of clinically useful measures are administered to the patients at various intervals throughout each treatment session in order to help in understanding patients’ needs. only measures administered at the initial intake assessment were retained for use in the current study. the research ethics boards at the children’s hospital of eastern ontario and at the university of ottawa approved this study. analytic plan a sequential binomial logistic regression analysis was used to test the model that best predicts refractory eds in this sample. the logistic regression analysis was performed on the outcome variable refractory status (single-episode = ; refractory = ), with eleven variables being used to predict group membership. the predictors were entered in sequential order, first on the basis of the main ed related variables (chronicity of ed, bmi at assessment, purging frequency over week period, drive for thinness, body dissatisfaction, depression scores, and anxiety scores), and next with the four additional maintenance variables (perfectionism, ineffectiveness, interpersonal distrust, impulsivity) from fairburn’s and colleagues model ( ). this allowed for the testing of the predictive capabilities of the ed related variables alone, followed by the contribution of the additional maintenance factors on the detection of refractory eds. a bonferroni correction was used due to the number of predictors in the model, thus a type i error rate of . (. / ) was applied. results the sample in this study consisted of adolescents who presented for a comprehensive assessment between june and january . of the patients who received intensive treatment, ( . %) were classified as single-episode cases, or refractory eating disorders in youth those adolescents who only received one round of intensive services, and ( . %) adolescents were classified as refractory cases, or those who received two or more rounds of intensive services. the refractory group contained almost exclusively females (n= , . %), and the number of treatment encounters ranged from a minimum of courses of intensive treatment to a maximum of rounds of intensive treatment. table presents the descriptive information for the eleven predictors separated by refractory status. predicting refractory status results of the sequential logistic regression analysis revealed a good model fit for the ed related variables [χ² ( , n = ) = . , p < . ]. based on the seven ed related variables, the single-episode group could be predicted at a . % accuracy rate, and the refractory group could be predicted at a . % accuracy rate. the model with both the ed related variables and the four additional maintenance variables also demonstrated good model fit, with a log-likelihood difference test revealing that model was reliably different, and its addition provided a statistical improvement to model [χ² ( , n = ) = . , p < . ]. with the addition of the four additional maintenance variables, the overall model was able to significantly predict . % of the single-episode group and . % of the refractory group. additionally, the hosmer & lemeshow goodness of fit tests were non-significant for both blocks of the model, providing further evidence that the set of predictors are adequate at classifying refractory status. the nagelkerke measure of strength of association increased with the addition of the second block of predictors, resulting in all variables accounting for . % of the prediction of refractory status. table displays regression coefficients, wald statistics, odds ratios and % refractory eating disorders in youth confidence intervals for the eleven predictors included in the full model. four of the seven ed related predictors, and three of the four additional maintenance factors uniquely and significantly contributed to the prediction of refractory status in this sample, while controlling for the effects of the other variables in the model. the odds ratios obtained in this analysis suggest that for every additional month of chronicity endured prior to presenting for an initial intake ed assessment, the odds that the individual will experience a refractory course versus a single-episode course are decreased by . %. the odds of having a refractory ed are increased by . % for each additional purging episode that is experienced in a -week period, and by . % for every one unit increase in body dissatisfaction that is experienced. contrary to what would be expected, the odds that an individual will experience a refractory course are decreased by % for every one unit increase in depressed mood that is reported. according to the analysis of the additional maintenance variables, ineffectiveness, interpersonal distrust and impulse dysregulation all significantly contributed to the prediction of refractory status over and above the contributions of the ed related variables. the odds of experiencing a refractory course of illness are increased by . %, . % and . % respectively with every one unit increase in ineffectiveness, interpersonal distrust and impulse dysregulation reported by the individual. perfectionism did not emerge as a significant predictor. taken together, these results suggest that higher frequency of purging behaviour, shorter chronicity, higher body dissatisfaction, and less depressed mood reliably predicts refractory status. adding to this, higher ineffectiveness, interpersonal distrust, and impulse dysregulation also add to the prediction of the refractory status while taking into account the other ed related variables, declaring the refractory eating disorders in youth importance of these additional maintenance variables in being able to differentiate between those adolescent ed patients who are classified as single-episode versus refractory. being able to differentiate between those patients who will have a refractory versus a single-episode course could allow for the development of treatment plans that are better tailored to suit the needs of the refractory sufferer. this could lead to more effective first courses of treatment, and could result in less need for repetitive intensive treatment courses. an increase in treatment effectiveness could result in decreased costs for the patient and the healthcare system, and allow for these savings to be redirected to treating more youth who currently fail to receive recommended services due to a lack of treatment resources. thus, early identification of refractory status yields important clinical information for treatment interventions and decisions. discussion the focus of the present study was to examine predictors of a refractory course of an ed in a large transdiagnostic sample of adolescents with eds, based on characteristics measured at the initial intake assessment. to date, the literature examining predictors of refractory eds is limited, and is even more limited for adolescent populations, which provides little guidance as to which characteristics when present, are able to identify those who are at risk of suffering from a refractory ed. in the large transdiagnostic sample of adolescents with eds explored in this study, approximately % were classified as refractory based on the definition of return to treatment. this is consistent with some past adult studies of clinical eds (richard et al., ). although adolescent studies have estimated prevalence rates of refractory eating disorders in youth rehospitalization to be between . % and . % (castro et al., ; steinhausen et al., ), these studies have been limited to only those suffering from an and to inpatient treatments only. thus, prevalence rates obtained from this study are more generalizable to adolescents with any type of ed who undergo various types of intensive treatments (i.e. inpatient and/or day hospital programs). results found in this study indicated that approximately in adolescents, who initially require intensive treatment for their ed, will experience a refractory course. based on these rates, much attention should be given to better identifying potential refractory cases at the point of entry into the mental health system, so that early identification and refined treatments geared towards those factors that maintain the illness could be applied. results from this study suggest that variables assessed at the initial intake can significantly identify those individuals who are likely to suffer from a single-episode versus refractory course of an ed. further, this study demonstrated that the additional maintenance variables added significant predictive value to refractory status over and above the ed related predictors. of the eleven predictors examined in a sequential model, the combination of seven of the indicators uniquely contribute to the successful prediction of refractory status at an accuracy rate of approximately %. chronicity of illness emerged as a unique significant predictor, with shorter chronicity (or more acute onset) predictive of refractory status. although adult studies have alluded to longer chronicity being a risk factor for refractory eds (howard et al., ; reas et al., ; richard et al., ), the findings in this study suggest the opposite. this result is most likely reflective of developmental differences concerning this construct in refractory eds. in an adolescent sample, having a severe, acute onset of refractory eating disorders in youth an ed that leads to an assessment at a tertiary care facility may indicate a greater severity of illness and a likelihood of a refractory course of illness. this could also be understood in terms of those with a more acute onset of the disorder being at greater risk of suffering from a refractory course of illness, as those who get severely ill very quickly may in fact represent a more at-risk group. this finding indicates developmental differences exist with this variable and its relation to refractory eds, and therefore speaks to the importance in studying the developmental appropriateness of those factors thought to be involved in refractory eds. another significant predictor that emerged from this study was frequency of purging behavior, which is in line with some previous studies (baran et al., ; garner et al., ; howard et al., ; ostuzzi et al., ). the current study provides further evidence that greater purging frequency is a risk factor of a refractory course of illness, and that the greater the frequency of purging behaviors, the greater the risk of experiencing a refractory course. clinicians should pay special attention to those patients who present with severe purging behaviour as this may be a sign that a refractory ed is present. in terms of ed related cognitions, body dissatisfaction emerged as another significant unique predictor of refractory eds, with those experiencing greater dissatisfaction with their bodies, representing those who might be at greater risk of experiencing a refractory course of an ed. this in line with previous work performed in adult samples of an and bn samples (keel et al., ). treatment attempts aimed at shifting or alleviating body dissatisfaction may be helpful in reducing the number of treatment encounters necessary to resolve the refractory ed. refractory eating disorders in youth further findings of the current study suggest that three of the four additional maintenance factors uniquely and significantly add to the predictability of refractory illness, after taking into account the other ed related variables in the model. the additional maintenance variables of ineffectiveness, interpersonal distrust and impulse dysregulation all emerged as unique significant predictors of refractory status, while perfectionism was not found to be significantly related. the inclusion of the additional maintenance variables significantly strengthened the predictive abilities of the model, allowing for an increase of . % in accuracy rates for successful prediction of refractory cases. this provides further evidence of the predictive strength of the majority of the additional maintenance variables to predict refractory eds, and adds merit to the role of these in fairburn’s and colleagues theory (fairburn, cooper, et al., ). these results also provide one of the first accounts of the generalizability of these factors to an adolescent sample. it demonstrated that regardless of age, ineffectiveness, interpersonal distrust and impulse dysregulation are factors that are related to maintaining an ed. the finding that perfectionism was not significantly related to the prediction of refractory status, confirms findings of one adult study for bn samples (tasca et al., ), yet contradicts the proponents of the maintenance model (fairburn, et al., ). this adds merit to testing the developmental appropriateness of these model constructs. further studies of perfectionism in this theoretical model across different age groups are still needed to fully understand whether this construct is related to the maintenance of eds. another surprising findings that emerged was that higher depressed mood decreased the chances of having a refractory ed. as the causal relationship between refractory eating disorders in youth depression and eating disorders is still under debate (wall, cumella, & lafferty o’connor, ), it may be that those who present with elevated levels of depressed mood represent those ed patients whose eating disorder is more about the depression than it is the ed. that is, for these individuals, once the depressive symptoms are lifted via means of treatment, the ed symptoms may then easily dissipate, as they were primarily present due to the concurrent depressive symptoms. it could also be the case that the depression inventory used in this study (cdi; kovacs, ) measures level of distress, and that some level of distress is necessary to be motivated for ed treatment. this finding may also be a result of developmental artifact, wherein only in adolescent samples does more severe depressed mood make an individual less likely to experience a refractory ed. other possible reasons for this finding is that adolescents with increased depressed mood may be those cases who are less in denial of their ed, therefore more accurately reporting feelings of low mood, or that their symptoms are no longer numbing the depression, creating more motivation for change. further research exploring this relationship in adolescent samples is needed to better understand this finding. one of the limitations of this study was the sole use of self-report questionnaires. triangulation of data from multiple sources (i.e. parents, teachers) could enhance the reliability of the predictors. additionally, the operational definition of a refractory ed as a return to treatment may have hindered some of the results, as it was not possible to account for individuals who returned to treatment in the adult system, who sought treatment at a different location or in the community, or those who did not return for treatment when it was recommended by the team. however, the operationalization of a refractory ed as a return to treatment did overcome the past problems with the definition, refractory eating disorders in youth and provided a more reliable and valid method of identifying those who are truly refractory. future studies should explore whether defining refractory eds as a return to treatment continues to provide a reliable method of identifying a group of adolescents who do not benefit from their first treatment course for an ed. also, studies examining the predictive nature of the maintenance model in the different diagnostic categories separately and in male samples would also be beneficial. further, examining post- treatment predictors or change score predictors, as has been performed in adult studies, may also be informative. lastly, examining the maintenance model and its predictive ability over time would also serve to help us better understand how it truly maintains the ed, thus longitudinal studies of this nature would be a large contribution to this field. the ability to better predict refractory eds, and to identify at initial intake those who are at risk for a refractory course of an ed could have a significant impact on the patient and their family, the treatment team that must invest heavily into the individuals care, and to the healthcare system as a whole. identification of factors that significantly maintain the disorder is crucial, as once researchers and clinicians can pinpoint these factors, they can provide more effective treatments designed to address maintenance or refractory constructs. findings from this study demonstrate that these variables are a reliable set of predictors that can help determine who may experience a refractory ed; therefore, assessment of these characteristics should be incorporated into clinical assessment and treatment recommendations. administering and incorporating this set of predictors into regular initial intake assessments can help identify, at intake, those individuals who are at risk of a refractory ed, and can help focus treatment efforts to refractory eating disorders in youth target these factors. with the peak onset of eds occurring during adolescence (bryant- waugh, ), it is essential to be able to identify and treat refractory eds in youth, as the long-term effects of refractory eds is likely to spill into adulthood, and carries with it heavy costs and 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( ). recovery from eating disorders. the australian and new zealand journal of psychiatry, ( ), - . doi: . / refractory eating disorders in youth table . means (sd) and reported ranges for all predictors separately for single-episode and refractory groups single episode (n= ) refractory (n= ) possible range mean (sd) reported range mean (sd) reported range ed related variables chronicity of ed (months) . ( . ) – . ( . ) – -- body mass index (kg/m ) . ( . ) . – . . ( . ) . – . -- purging frequency . ( . ) – . ( . ) – -- drive for thinness . ( . ) – . ( . ) – – body dissatisfaction . ( . ) – . ( . ) – – depressed mood (t-score) . ( . ) – . ( . ) – – anxiety (t-score) . ( . ) – . ( . ) – – maintenance variables perfectionism . ( . ) – . ( . ) – – ineffectiveness . ( . ) – . ( . ) – – interpersonal distrust . ( . ) – . ( . ) – – impulsivity . ( . ) – . ( . ) – – refractory eating disorders in youth table . sequential logistic regression of refractory status predicted by ed related and maintenance variables (n= ) b wald (pvalue) odds ratio % ci for odds ratio model (p value) - log likeliho od hosmer & lemeshow (p value) nagel- kerke r lower upper block : ed related . (. ) . . (. ) . chronicity of ed -. . (. ) . . . bmi -. . (. ) . . . purging frequency . . (. ) . . . drive for thinness -. . ( . ) . . . body dissatisfaction . . (. ) . . . depressed mood -. . (. ) . . . anxiety . . (. ) . . . block : maintenance . (. ) . . (. ) . perfectionism -. . (. ) . . . ineffectiveness . . (. ) . . . interpersonal distrust . . (. ) . . . impulsivity . . (. ) . . . bonferroni correction applied: p = . / = . refractory eating disorders in youth identifying profiles of refractory cases in adolescents with eating disorders: a latent profile analysis refractory eating disorders in youth abstract eating disorders (eds) are repeatedly described as chronic, and are known to have their onset during adolescence. identifying profiles of those adolescents at risk of suffering from a chronic ed is currently not possible. similarly, our knowledge of the profiles or groups of refractory eds- or those eds that require two or more intensive treatment courses, is also very limited. the objective of the current exploratory study was to examine whether adolescents can be classified into groups based on a number of factors theoretically associated to refractory eds, and whether indicators at initial assessment or pre to post the first treatment encounter, are able to differentiate between profiles. for the first analysis adolescents participated, whereas data from adolescents were available for the second analysis (had both pre and post data available). results of the first profile analysis revealed that three groups do exist when examining ed related and additional maintenance characteristics at initial intake, but that no emerging group represented a refractory group. findings of the second analysis also revealed a -class solution that best fits the data, and that one of the groups from the emerging classification was statistically related to the refractory group, establishing that progress indicators can reliably distinguish a refractory group. results of this study suggest that when examining ed related and additional maintenance variables either at initial intake or across the first treatment encounter, three types of profiles seem to exist. the ability to distinguish a refractory course of illness based on patient profiles is possible using progress indicators, thus clinicians should place more weight on how an adolescent with an ed responds to treatment during their first treatment encounter as an indicator of a possible refractory ed, versus those characteristics reported at the initial intake assessment. refractory eating disorders in youth identifying refractory eating disorders in adolescents: a latent profile analysis studies have shown that adolescents diagnosed with an eating disorder (ed) face a lifelong battle with their eating problems (kruger et al., ; lask et al., ). this battle pulls the adolescent far from the normative developmental trajectory, and accompanies with it many physical, psychological, and social consequences (pike, ; reijonen, ). for this reason, eds have been described as being ‘high-priced’ both in terms of healthcare dollars and in mortality rates (krauth, buser, & vogel, ; simon, schmidt, & pilling, ; striegel-moore, leslie, petrill, garvin, & rosenheck, ). with adolescence representing the peak onset for an ed (reijonen, ), and with long- term outcome studies reporting recovery rates as low as % at -year follow-up (steinhausen, ), the apparent need to understand adolescent-onset eds and their outcomes is imminent. identifying individuals at risk of suffering from a long course of an ed is currently not possible. this may in part be due to the lack of consensus across clinicians and researchers on how to define poor long-term outcomes, relapse and recovery as it applies to the eds (quadflieg & fichter, ; steinhausen, ; walsh, ). although recovery, relapse, and long-term outcomes all appear to vary in definition and operationalization across the ed literature (quadflieg & fichter, ; steinhausen, ; walsh, ), what is certain is that those who return for a second or third course of the same type of treatment represent those cases who have truly experienced a relapse. in other words, those individuals who require a return to same-type treatment could qualify as those who have a refractory course of illness. refractory eating disorders in youth the term refractory in medical literatures refer to those whose symptoms are resistant to treatment (us national library of medicine, ). if an individual is recommended to undergo a second round of a similar-type treatment, this can be equated to symptom resistance or presence of a refractory ed. the ability to identify those individuals that may be at risk of a refractory course, as well as the ability to profile these individuals in terms of psychopathology and psychosocial functioning, may have several clinical benefits. specifically, the ability to tailor and apply specialized interventions to the most at-risk group of refractory ed cases could potentially alter and shorten the duration of a refractory course of illness. currently, our knowledge of the profiles of those who might be at risk of a refractory course of an ed is limited. similarly, possible indicators or factors involved in a refractory ed also remain inconsistent due to definitional and methodological issues (richard, bauer, & kordy, ). depending on the terminology used to describe this course of illness, differing variables have been found to predict refractory eds. for example, a large review of poor long-term treatment outcomes of eds (ghaderi, ) point to some predictors that might be implicated in refractory cases. similarly, studies examining predictors of hospital re-admission (e.g. castro et al., ) or relapse (e.g. salbach-andrae et al., ) also provide some pertinent variables to examine when exploring refractory eds. although these types of studies provide some evidence of significant predictors of refractory eds, they all differ in their terminology and operationalization of the outcome variable, making it difficult to build strong evidence of any one predictive profile. another issue is that some studies have investigated predictors that are collected at the initial intake assessment, whereas other studies have looked at refractory eating disorders in youth progress or change predictors, that is predictors that are based on the change that has occurred between two time points (e.g. between pre and post treatment). the difference between these two types of data makes it difficult to combine the findings of the various studies to establish a concrete profile of refractory eds. it also makes it difficult for practitioners to know which variables to pay attention to for the detection of a refractory course of illness. some of the key variables that have been demonstrated to be related to refractory eds relate to purging symptomatology (baran, weltzin, & kaye, ; garner, garner, & rosen, ; howard, evans, quintero-howard, bowers, & andersen, ; ostuzzi, didonna, & micciolo, ), lower bmi at time of referral (hebebrand et al., ), longer duration of illness (howard et al., ; reas, williamson, martin, & zucker, ; richard et al., ), later age of onset (baran et al., ), negative attitudes regarding weight and shape (castro et al., ; richard et al., ), and psychiatric comorbidity (keel & mitchell, ; pike, ; salbach-andrae et al., ). similarly, some of the progress or change predictors that have been found to be related to refractory eds involve the presence of residual symptoms at discharge, slower response to treatment (mcfarlane, olmsted, & trottier, ), low bmi at discharge and insufficient weight gain over the course of hospitalization (castro et al., ; howard et al., ; lay, jennen-steinmetz, reinhard, & schmidt, ; ostuzzi et al., ). the ability to distinguish a refractory course of illness based on patient characteristics at initial intake versus progress indicators across treatment has yet to be established. both types of characteristics provide vital information for the treating professionals. whether refractory eating disorders in youth these types of information can be useful to identify individuals at risk of a refractory course of illness still warrants further investigation. maintenance variables, or factors that predict symptom persistence versus symptom remission (stice, ) are also relevant to refractory eds. thin ideal internalization, body dissatisfaction, negative affects, and perfectionism have all been identified as variables thought to play a role in maintaining an ed (stice, ). similarly, a recent theoretical maintenance model of eds proposed by fairburn and colleagues in (fairburn, cooper, et al., ) also contained maintenance factors. according to their new transdiagnostic theory, one or more of the four additional maintenance factors (core low self-esteem, interpersonal difficulties, perfectionism, and mood intolerance) interact with the original three core eating disorder pathology factors (over-evaluation of eating, shape and weight and their control) and together they act as an obstacle to change for certain individuals who experience severe or problematic ed symptoms, leading to persistent or maintained eds. in terms of identifying and classifying different types of persistent eds, robinson ( ) introduces what he labels seeds- serious and enduring eating disorders. a seed is defined to capture those with a minimum ed chronicity of years and those who are characterized with having chronic and compromising symptomatology. robinson ( ) suggests that there are different subtypes of seeds; those who are truly treatment-resistant, those with chronically low weights and ed related issues yet respond to treatment, and those who experience brief periods of partial remission intermingled with multiple serious relapses. although this term is intended to capture and systematically define those suffering from a refractory ed, to date this term is not widely refractory eating disorders in youth used in the ed literature, nor is the applicability to youth samples been tested. nonetheless, the seed subcategories are the first attempt in the ed literature to differentiate between different types of refractory cases. an empirical study to validate these categories has yet to be performed in either adult or adolescent samples. based on the theory found in stice’s ( ) maintenance variables, fairburn and colleagues ( ) transdiagnostic maintenance model, and robinson’s seeds groupings ( ), it is plausible that three different ed groups exist; those who are single-episode, those characterized by cyclical periods of remission followed by relapses, and those who are identified as having chronically low weights and continuous ed related issues. whether these grouping are detectable at initial intake assessment or based on progress indicators across the first treatment encounter is one of the main focuses of the current study. identifying subsamples of individuals within a certain population has a multitude of implications and benefits. primarily, it can help develop better interventions more directly targeted to the specific subsample, and it could also aid with the specific reach and effectiveness of future interventions (mailey et al., ). several statistical methodologies are able to identify subgroups of individuals based on behavioral profiles or characteristics of the individual. latent profile analysis (lpa), also known as latent class cluster analysis (lcca) is one of these techniques that identifies unique subgroups based on the profiles of continuous indicators of interest (vermunt & magidson, ). within the field of eds, several classification studies have been performed, mostly with the intent of refining the nosology or phenotypes of eds. for example, an lpa has been performed to classify ed diagnosis in both clinical (e.g.eddy et al., ; refractory eating disorders in youth holle et al., ; keel et al., ) and community-based samples (e.g. (duncan et al., ), and classification of ednos phenotypes (mitchell et al., ), and phenotypes based on personality traits (krug et al., ) and ed symptoms (bulik, sullivan, fear, & pickering, ) have also been conducted. very limited profile research has been performed in adolescent samples of eds, and no studies have attempted to examine profiles of ed related and maintenance factors in either adult or adolescent samples. the objective of the current exploratory study is to examine whether adolescents can be classified into groups based on a number of continuous psychological, psychosocial and additional maintenance factors theoretically associated to refractory eds. further, this study aims to investigate whether the classification that does emerge permits for the identification of a distinct refractory group. as indicators of refractory status have previously been based on both initial assessment data and on progress scores across treatment, two lpas are proposed in order to investigate whether each type of data can reliably identify distinct profiles of pediatric refractory eds. the first lpa will concern data collected at the initial intake assessment, whereas the second lpa will examine pre to post data across the first treatment encounter. to accomplish the objectives in this study, several steps were performed for each data type examined (initial intake assessment data and change score data across the first treatment course). in both data sets, the first step was to explore how many groups emerged based on the set of variables included in the analysis. the next step was to examine whether the emerging groups or profiles clearly distinguish a refractory subgroup. this includes statistically testing whether differences exist amongst the emerging profiles. further, and in order to confirm whether a refractory group is refractory eating disorders in youth detectable either at initial intake or based on pre to post change scores, a comparison of the emerging groups against refractory status as defined by a return to same-type treatment was examined. methods participants participants for this study consisted of adolescent ed patients who received specialized inpatient and/or day hospital treatment between january and january from a tertiary care hospital located in ottawa, canada. the overall sample consisted of females ( . %) and males ( . %) between the ages of and years, with a mean age of . years (sd= . ). all youth had a diagnosis of a moderate to severe ed, obtained by a consensus diagnosis delivered by a physician and psychologist/psychiatrist based on dsm-iv-tr criteria (american psychiatric association, ). just over half ( . %) of the sample was diagnosed with an, . % of the sample was diagnosed with bn, and exactly one third of the sample ( . %) was diagnosed with ednos. data retained for use in this study consisted of participants who met criteria for a refractory ed or who were considered single-episode. refractory eds are operationally defined as all adolescents who return for a second course of the same type of intensive treatment or return to a more intensive level of treatment (i.e. complete day treatment and return for inpatient treatment). single-episode cases are defined as those patients who have received only one recommended treatment dose. both initial assessment and pre to post data collected over the course of the first treatment encounter were used in the current study. refractory eating disorders in youth description of eating disorder program participants of this study consisted of individuals who were treated by the regional ed program located at the children’s hospital of eastern ontario. the population treated includes children and adolescents aged to years from across the province, serving a population of approximately . million. patients are referred through three channels, either via their family physician, the local emergency department, or through a provincial network. two specialized group-based intensive programs are offered: inpatient or day hospital services. both programs are group-based integrated programs primarily based on maudsley family-based treatment (fbt) principles (lock & fitzpatrick, ), wherein the parents are empowered to support their child in recovery. the program also incorporates some components of cognitive-behavioural treatment, dialectical behaviour therapy, mindfulness, expressive arts therapy, pet therapy and interpersonal therapy. day hospital program. the day hospital eating disorder program has been in operation since , and represents the first specialized partial hospitalization treatment program offered in the region. the program has a maximum capacity of youth, and operates from am to pm days per week. the typical length of program is - weeks, and approximately patients are treated each year. during the course of the program, all recipients receive group therapy, meal support, academic support, therapeutic outings, and individual and family therapy. this program is often used as a step-down treatment plan for those who successfully complete the inpatient program. inpatient program. since the formal opening of the program in january of , the inpatient eating disorder program has treated approximately to children and refractory eating disorders in youth youth each year, with average lengths of stay ranging from to days. this group- based treatment program has six inpatient beds, allocated on a shared child psychiatric ward of a local tertiary care pediatric hospital. the main goal of the specialized inpatient program is medical stabilization, although normalization of eating, nutritional rehabilitation, and reduction of comorbid symptoms is also a focus. individual and fbt are also essential to the inpatient program. assessment measures demographic data. the demographic variables age, gender, bmi, diagnosis, treatment modality, and chronicity of illness at assessment were collected from clinical charts. children’s depression inventory (cdi; kovacs, , ). the cdi is a - item, validated self-report questionnaire assessing cognitive, affective, and behavioral variables related to depression in children and adolescents. it is valid for youth between and years of age (kovacs, ). the questionnaire yields five subscales and a total score. overall, the cdi demonstrates good psychometric properties and sensitivity to clinical changes in depressive symptoms over time (kovacs, ; smucker, craighead, craighead, & green, ). it has been established as internally consistent and valid in both clinical and non-clinical samples of adolescents (kovacs, ; smucker et al., ), with internal consistency scores in the current sample estimated at . for the total score. norms and clinical cut-offs for this scale are derived based on t-scores, wherein t-scores of to are considered in the normal to borderline range, and t-scores of or greater are indicative of clinical levels of depressed mood. only the cdi total score and corresponding t-score will be retained for use in this study. refractory eating disorders in youth multi-dimensional anxiety scale for children (masc; march, ). the masc is a -item self-report questionnaire measuring anxiety related symptoms in children between and years of age (j.s. march, ). the questionnaire yields four scales, three indices, and six subscales. overall, the masc yields good psychometric data, good internal consistency (march, parker, sullivan, stallings, & conners, ), and is sensitive to clinical changes in anxiety related symptoms over time (march, ). it has demonstrated good internal consistency properties in the current sample with an alpha coefficient of . for the total score. norms and clinical cut-offs for this scale are derived based on t-scores, wherein t-scores of to are considered in the normal to borderline range, and t-scores of or greater are indicative of clinical levels of anxiety. only the total score and corresponding t-score will be examined in this study. eating disorder inventory – (edi- ; (garner, ). the edi- provides a comprehensive assessment of the behavioral and psychological dimensions characteristic of eds. the edi- is a reliable and valid -item multidimensional self-report instrument that assesses characteristics of eds, with higher scores indicating more severe symptomatology and/or more pathological attitudes and cognitions. the edi- is divided into subscales and has been found to have good psychometric properties. the specific subscales and corresponding internal consistency values (derived from an adult clinical ed sample of women aged to years) for those indices to be used in the current study are: drive for thinness (. ), body dissatisfaction (. ), perfectionism (. ), impulse regulation (. ), ineffectiveness (. ) and interpersonal distrust (. )(eberenz & gleaves, ). these values provide evidence of good internal consistency for those subscales to be used in the current study. possible ranges for these subscale scores are refractory eating disorders in youth presented in table . as has been done in previous studies (tasca et al., ), the additional maintenance model construct of mood intolerance will be measured using the impulse regulation subscale, the construct of core low self-esteem will be measured using the ineffectiveness subscale, and the construct of interpersonal difficulties will be measured using the interpersonal distrust subscale score. purging frequency. to obtain a frequency of purging behavior for use in this study, the combination of items from two different self-report measures was employed. this is because prior to , the eating disorder inventory – symptom checklist (edi- sc; garner, ) was used to establish self-reports of ed related behaviors and symptoms. in this questionnaire, the item ‘how many times over the past month did you vomit’ was used to establish frequency over a one-month period. after , self-reports of ed symptoms were established using the eating disorder examination questionnaire for adolescents (edeq-a; carter, stewart, & fairburn, ). question of the measure asks respondents to indicate the number of times the individual has vomited over the past weeks for the purposes of losing weight. in order to have one measure of purging frequency, the monthly estimates from the edi-sc were divided by two and then merged with the edeq-a scores to create a frequency measure of purging across a - week span. although there is no evidence that supports the accuracy or validity of this method, self-report measures of frequency of symptoms are almost always retrospective and therefore considered biased, thus combining these reports in this fashion was not considered a threat to the integrity of this data. refractory eating disorders in youth procedures this study consists of secondary use of clinical data retrieved with permission from the eating disorder program at cheo. one of the clinical components of the program is the use of psychometric measures to aid in evaluating the patient’s recovery over time. batteries of clinically useful measures are administered to the patients at various intervals throughout each treatment session in order to help in understanding patients’ needs. only measures administered at the initial intake assessment and pre and post the first treatment session were used for the current study. the research ethics boards at the children’s hospital of eastern ontario and at the university of ottawa approved this study. analytic plan the statistical analysis used in the current study consisted of two latent profile analyses (lpa). latent profile analysis is a model-driven statistical approach used to identify classes of individuals who share similar combinations of behavioral profiles (b. o. muthén, ). this approach uses continuous indicators to determine a categorical latent variable, and allows for the examination of unobserved subpopulations based on a combination of observed variables. a lpa has several favourable properties, namely it allows for exploratory analyses, it is flexible in that it can handle continuous and categorical data simultaneously, and also it yields a probabilistic classifying approach that allows for the assignment of group membership based on observed scores (wang & hanges, ). additionally, this statistical technique has been shown to have a couple of advantages over standard cluster analytic techniques (e.g. k-means, fuzzy clustering) in that it has more formal criteria and fit statistics to aid in the decisions of number of refractory eating disorders in youth classes found (vermunt & magidson, ), and that there are relatively few assumptions needed to satisfy prior to performing this analysis (lpa can handle abnormal distributions, modest correlations between continuous indicators, missing data, etc). prior to analysis beginning, all data were subjected to a thorough data cleaning process and missing value analysis. data were found to be missing at random (mar), and as lpa utilizes maximum likelihood estimation and is able to handle missing data, no missing value substitution was employed. lpa analyses were conducted using mplus . (muthén & muthén, ). two lpas were performed in order to detect whether distinct profiles of individuals based on similar behavioural profiles would emerge from data obtained at the initial intake assessment or from residual change score data derived from the first treatment encounter. the variables used in the first lpa of initial intake assessment indicators included bmi, chronicity of disorder at assessment, purging frequency, drive for thinness, body dissatisfaction, levels of depressed mood, levels of anxiety, perfectionism, interpersonal distrust, impulsivity and ineffectiveness. the variables to be used in the second lpa consist of residual change scores (manning & dubois, ) of pre to post data from across the first treatment encounter. the variables length of stay in treatment and the residual change scores for bmi, drive for thinness, body dissatisfaction, depression, anxiety, perfectionism, interpersonal distrust, impulsivity, and ineffectiveness will be included in this analysis. residual change scores are considered more reliable than the simple difference scores because they take into account the individuals pre-level scores when determining the amount of change that has occurred (manning & dubois, ). the residual change refractory eating disorders in youth score then reflects the difference between the actual observed score and the predicted value. in the current study, residual change scores of the pre to post changes across the first treatment encounter were used to explore whether progress through treatment was a good indicator of refractory status. for the results of the lpas, several fit indices were calculated in order to aid in determining which classification model best fits the data. no formal cut-offs exist to aid in deciding how many groups exist, instead these analyses rely on comparing indices to select the best fitting model. the akaike information criterion (aic; akaike, ), the bayesian information criterion (bic; schwarz, ), and the sample-size adjusted bayesian information criterion (sabic; sclove, ) are all goodness-of-fit indices, where lower values correspond to a better fitting model. entropy scores are used to determine how accurate classification was performed, with higher scores indicative of greater classification accuracy. the lo-mendell-rubin (lmr) adjusted likelihood test provides an inferential statistic in which it can be inferred whether the specified model fits better than a model with one less class. a significant value indicates that the number of classes specified in the particular analysis is a good fit for the data. all of these measures were used in the current study to aid in determining how many classes emerged from the two separate datasets, although the decision was based more heavily on bic values and lmr tests, as these indices have been shown to be the most robust (meghani, lee, hanlon, & bruner, ; nylund, asparouhov, & muthén, ). nine models were conducted for each data type, wherein different types of specifications for the covariance structure were estimated. this allowed for the modeling of different types of structures with and without freely estimated covariance structures. in refractory eating disorders in youth order to ascertain the most reliable model, analyses were conducted with the most restrictive model first, and then restrictions were slowly removed until the most parsimonious yet best fitting model was found (vermunt & magidson, ). as a - class solution was predicted, a -, - and -class model was estimated, each with three different types of restrictions examined. therefore, nine models in total were estimated separately for the two sets of data examined. once the clusters were identified, class probabilities and class assignments were extracted and added to the original data file in order to examine any mean differences that existed between the groups found. after class assignment was established in the original dataset, and a series of one-way anovas were performed to examine group differences amongst the emerging profiles. this method of comparison was favored over performing manovas, as this type of analysis most closely resembled the mean scores obtained in the latent profile model due to missing data not limiting the estimates. lastly, tukey hsd post-hoc tests were performed to determine where any mean differences existed across the groups. results descriptive statistics the sample consisted of youth who presented for an ed assessment at a local tertiary pediatric hospital, and who received intensive services due to the severity of their illness. when defining refractory disease as a return to intensive treatment, ( . %) adolescents in the sample were classified as refractory whereas ( . %) were classified as single-episode. of the adolescents who had initial intake assessment data available for analysis, only had both pre and post treatment data available in order to compute the residual change score. therefore, the second set of analysis was refractory eating disorders in youth performed on a subset of the original sample. comparisons of the two adolescent subsamples reveal that the pre to post group is significantly older than the larger group, indicating that caution with the generalizability of this study findings to younger populations should be taken. table provides descriptive data for the indicator variables used in this study (at initial intake assessment only). initial intake assessment data the first lpa was conducted using continuous indicators measured from a transdiagnostic adolescent ed group during their initial intake assessment. this allowed for the examination of how many profiles existed when refractory-related and additional maintenance variables are examined in the same classification model. as a -factor model was hypothesized, -, - and -factor models were estimated, starting with the most restrictive model followed by a model with fewer restrictions. results of the analysis reveals that the best fitting model for the data was a -factor solution with class- dependent covariance values set to zero. the bic value for this model was the lowest amongst all models, and the lmr ratio test was significant (p=. ) indicating that the -class model was a better fit than the -class model. the entropy score was . , suggesting high classification accuracy and good separation between class probabilities existed. results of the goodness-of-fit indices for the nine models are presented in table . according to the -class solution, adolescents ( . %) were classified to latent profile , adolescents ( %) were classified to latent profile , and adolescents ( . %) were classified to latent profile . mean differences between the three groups for almost all variables were observed. table outlines the results of the anova tests. refractory eating disorders in youth to explore whether one of the profiles that emerged from the lpa represented a distinct refractory group, a comparison of the three profiles against refractory status, as defined by return to treatment, was performed. a chi-square analysis of the different classes that emerged from the initial intake assessment data against refractory status revealed a non-significant finding [χ² ( ) = . , p = . ], indicating that measures at initial intake assessment are not good indicators of refractory class membership. residual change score data another objective of this study was to examine refractory related and maintenance variables of pre to post change scores across the first treatment encounter. this was performed to explore whether unobserved groups existed when examining progress with treatment. a lpa with continuous indicators reflecting residual change scores of pre to post change across the first treatment encounter was conducted, with -, - and - factor models being estimated. results of this analysis reveal that a -factor solution with class-dependent covariance values set to zero emerges as the superior model. although the bic value for this model was not the lowest amongst all models, it was the model with the lowest bic score that also had a significant lmr ratio test (p=. ). the entropy score for this model was moderate at . . table displays the goodness of fit indices for the nine models. the classification results places adolescent ( . %) in latent profile , adolescents ( . %) in latent profile , and adolescents ( . %) in latent profile . a comparison of the three classes that emerged from this lpa was performed in order to examine the distinct profiles, and to explore whether one class could be considered a refractory group. results of this analysis are displayed in table . the first refractory eating disorders in youth class that emerged from this lpa consisted of those adolescents who all achieved negative residual change on almost all refractory related and additional maintenance variables; that is, those who did better than would be predicted based on the groups’ expected trajectory. another notable characteristic of this class was that adolescents in this group on average stayed in intensive services for almost months, the shortest length of stay across all three profiles. class , which makes up the smallest latent profile, consists of adolescents who report the type of change that would be predicted based on the samples’ mean trajectory. adolescents in this group stayed in treatment for just under months, and could be characterized as those who responded to treatment in the expected manner. the last and largest class ( . %) contains adolescents who report positive residual change on all refractory related and additional maintenance variables, that is those who had observed scores at post that were higher than expected, indicative of poor progress while in treatment. results of the tukey hsd post hoc comparisons revealed significant mean differences across all indicators with regards to differences in residual change scores. only length of stay and perfectionism were not significantly different between class and class , otherwise all other mean differences were significantly different. table presents the results of the post hoc comparison tests. a chi-square analysis performed with the classes that emerged from the residual change score lpa against refractory status as defined by a return to treatment revealed a significant result [χ² ( ) = . p < . ], indicating that there is significant association between the refractory status classification and the profiles that emerged from the second lpa. a crosstabulation analysis shows that adolescents who are refractory are much more likely to be classified to class , with . % of those in this class belonging to the refractory eating disorders in youth refractory group. this significant finding provides some preliminary evidence that progress across the first treatment course in regards to ed related and additional maintenance factors can significantly provide a profile of a refractory course of illness. that is, those who exhibit less than expected progress within the first treatment course have close to a % chance of later presenting with a refractory course of illness. this significant result also demonstrated that it is progress over time and not static measures at initial assessment that better predicts profiles of refractory eds in adolescent samples. comparison of classifications a third analysis was performed to examine the relationship between those classified in the first lpa compared to those classified in the second lpa. the result of the chi-square analysis [χ² ( ) = . , p = . ] demonstrates a non-significant finding suggestive that the two different lpas are not classifying the adolescents in a similar fashion. a cross-tabulation analysis of the two classification groupings further reveals that only individuals were classified to the same group by both set of analysis. this analysis demonstrated that those in class had the best matching rate (n= in class ; n= in class ; n= in class ) than those in the other two classes. discussion this study examined a large transdiagnostic sample of youth with eds with the aim of determining whether distinct subgroups existed that would profile refractory cases of eds. in this exploratory study, two different classification analyses were performed to investigate whether scores at the initial intake assessment or change scores from pre to post the first treatment encounter, produced classes of individuals that could be then be profiled to represent an adolescent refractory ed group. several theoretically-driven ed refractory eating disorders in youth related refractory variables and four additional maintenance variables were modeled, with the purpose of exploring any profiles that emerged from combinations of these variables. as previous research has shown (e.g. richard et al., ), much heterogeneity exists with regards to our understanding of refractory status in the eds. thus, this study aimed to characterize this heterogeneity by studying whether unobserved groupings derived from several observed indicator variables of refractory status can enhance our current understanding. patient-level characteristics captured at the initial intake assessment have been shown to have predictive ability of those who may be at risk of a refractory ed (e.g. castro et al., ). thus, a classification analysis of these indices to see whether there is a specific profile that exists among these indicators was performed. the results of the lpa revealed a -factor structure that best fits the data, which is consistent with the number, but not the type of groups hypothesized in this study. the high entropy score that was obtained (. ) provides an indication that this model was highly accurate at classifying these adolescents into the emerging groups. this confirms that three groups exist when examining refractory related and additional maintenance variables assessed at initial intake assessment in clinical samples of youth with eds. based on analyses exploring differences between profiles, non-significant results were yielded, indicating that profiles that exist based on characteristics at initial intake assessment do not differentiate a refractory group as operationalized in this study. it may be the case that initial intake characteristics are not sensitive enough to define refractory eds, or that this course of illness is not detectable or present until later on in treatment or developmental age. refractory eating disorders in youth as some evidence exists that posits that change while in treatment is predictive of refractory status (e.g. mcfarlane et al., ), a second lpa was performed to examine whether progress over the course of the first intensive treatment round helped to identify refractory cases. similar to the number of profiles that emerged from the initial intake analysis, findings of the second lpa on change in the first treatment course revealed a - class solution that best fits the data. this suggests that when examining refractory related and additional maintenance variables either at initial intake or across the first treatment encounter, three types of profiles exist. the three profiles that emerged had some interesting properties. the first profile contained adolescents whose mean scores on all post measures were better than would be predicted based on the samples average progress trajectory, indicating that this group responded to treatment more favourably than would be expected. this class also had the shortest length of stay of all three groups, which corresponds to the positive change observed in pre and post treatment scores. the second group that emerged contained adolescents who responded to treatment as would be predicted based on the samples mean progress scores. across almost all indicators, very small residual change scores were observed, which corresponds to those who generally did as expected with treatment. class contained adolescents who had large positive residual changes across their pre to post scores. this is indicative of ed related and additional maintenance factors that did not improve as expected with treatment. based on the residual scores obtained, it could be possible that many of those who were classified to profile would be those individuals who may require further intensive services, due to the lack of change or worsening of symptoms that occurred across the first treatment encounter. the post hoc tests performed refractory eating disorders in youth with these classes suggests that many of the indices differed significantly across all groups, with the exception of perfectionism and length of stay between class and class , and bmi scores between class and . these comparisons do not necessarily provide a clearer picture as to whether one of the groups could be labeled more definitively as a refractory group, but do provide evidence that significant differences exist amongst the groups based on their trajectories across the first treatment encounter. evidence that three groups or classes exist in this adolescent sample when examining refractory related and additional maintenance variables across the first treatment encounter was found. a comparison of the classification results against refractory status as defined by a return to treatment revealed a significant finding, suggestive that these groups do resemble one another. a closer look at this finding demonstrated that the third profile contained the majority of those who were classified as refractory. these results suggest that change score indicators across the first treatment course are better at identifying those who may present with a refractory ed, versus data gathered at the initial intake assessment. therefore clinicians and treating professionals should pay more attention to progress indicators than to initial assessment characteristics when trying to establish refractory eds. this provides one of the first accounts as to which type of data is better identifying a refractory ed, and suggests that adolescents’ progress over the course of treatment provides a more accurate prediction as to whether one might suffer from a refractory ed than does characteristics at initial assessment. that is, those adolescents who display less than expected progress across treatment should be monitored closely for risk of a refractory course. refractory eating disorders in youth although some recent evidence exists (e.g. mcfarlane et al., ) that has started to explore the predictability of progress indicators at detecting a refractory course of illness, to date there are no adolescent studies of this kind, nor any studying a transdiagnostic sample. even though previous studies have found that response to treatment, higher bmi at discharge, and residual ed symptoms have been significantly linked to the prediction of relapses in adults (mcfarlane et al., ), no similar studies to date have looked at the additional maintenance factors in combination with other ed related variables, and explored whether profiles exist that better predict refractory eds in adolescents. the current study provided one of the first accounts of those progress indicators that may help identify refractory courses of illness. also, as it was shown that it was profiles of the progress indicators and not profiles from initial intake that are more predictive of an adolescent with a refractory ed, clinicians should focus more on how an adolescent progresses over treatment as an indicator of whether a refractory course of illness is present. although the hypothesized subgroups did not emerge based on the indicators investigated in this study, three profiles were found to exist amongst youth with eds with regards to ed related and additional maintenance factors. also interesting is that three distinct profiles existed regardless of whether examining initial assessment data or change score data across the first treatment encounter. these findings suggest that regardless of data type, the combination of ed related and additional maintenance indicators resulted in three different types of adolescent ed profiles. this finding alone is worthy of further investigation to explore whether diagnostic classifications may aid in better defining refractory eating disorders in youth these groups, or to explore whether other prognostic indicators might be more helpful in distinguishing between these three groups. limitations this study was limited in that it was exploratory in nature, and therefore cannot yet be generalized to other samples until further testing in different samples has revealed similar findings. also, as this study presents as one of the first investigations of this type, only those variables that were theoretically applicable were included, limiting our understanding as to whether other variables may have added significantly to the profiles of those with a refractory ed. future studies should aim to investigate different types of factors or indicators in order to gain a full picture of these youth. other limitations of this work are the sole use of self-report measures to examine these profiles. although this limits the interpretation to only those answers that were provided by the youth, future studies should strive to examine parent and/or clinician measures in order to corroborate the findings. furthermore, fairburn and colleagues maintenance model ( ) includes core eating disorder variables, described as eating concern, shape concern and weight concern. although this study was not able to include these variables due to a lack of a developmentally appropriate measure (i.e. the eating disorder examination questionnaire), future studies should aim to include all variables pertinent to the maintenance model in order to best understand how this theory relates to refractory ed cases in youth. future directions future work in this area should attempt to replicate these findings in similar clinical samples of youth with eds. in addition, replicating these findings in adult refractory eating disorders in youth samples would also provide further evidence that profiles based on refractory related variables coupled with reports of the additional maintenance variables could reliably identify profiles of adolescents at risk of facing a refractory course of illness. future studies should also investigate the influence of diagnosis on the classification of these profiles, and should potentially also examine the effect of age, presence of family history of eds and alcohol abuse (steinhausen et al., ), as these variables have all had some relation to refractory eds in past studies. further, results of the second lpa performed with residual change scores demonstrates the emergence of three distinct trajectories; that is; adolescents who do better than expected, adolescents who respond to treatment as expected, and adolescent who do worse than expected with treatment. this suggests that three distinct trajectories exists, therefore future studies should examine longitudinal data in order to understand and study these trajectories in greater detail. lastly, and with respect to evaluating change scores for the purpose of finding profiles, the inclusion and study of graduation status (completer, partial completer, drop-out) could also lend to more accurate classification results. this exploratory study examined refractory related and additional maintenance profiles of youth with eds who underwent intensive treatment for their moderate to severe ed. results revealed distinct classes of adolescents that emerge, with data from both the initial assessment and change scores across the first treatment encounter reliably separating three different profiles. this leads to the conclusion that three distinguishable profiles exist when studying measures theoretically related to refractory eds in adolescent samples, regardless of whether at initial assessment or based on progress across treatment. in addition, another major finding of this study is that progress refractory eating disorders in youth indicators, and not initial intake data, provide significant information regarding whether an individual is at risk of developing a refractory ed. this suggests that future research should continue to investigate the predictability of progress indicators in detecting refractory eds. from a clinical standpoint, these findings suggest the need for, and monitoring of, pre and post levels of those factors found to be related to refractory eds, as those individuals with less progress than would be expected are more likely to be at risk of requiring a return to treatment. close monitoring and continued work on ed related and additional maintenance factors related to refractory eds could aid in preventing a refractory course, or potentially lessen the number of treatment courses needed. refractory eating disorders in youth references akaike, 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( ). latent class procedures: applications to organizational research. organizational research methods, ( ), - . doi: . / refractory eating disorders in youth table . descriptives of ed related and additional maintenance predictors (n= ). indicator mean sd reported range possible range intake assessment scores body mass index (kg/m ) . . . – . -- drive for thinness . . – – body dissatisfaction . . – – depressed mood (t-score) . . – – anxiety (t-score) . . – – perfectionism . . – – interpersonal distrust . . – – impulsivity . . – – ineffectiveness . . – – chronicity (months) . . – -- purging frequency (over weeks) . . – -- length of stay (days) . . . – . -- refractory eating disorders in youth table . results of latent profile analysis of initial intake assessment data (n= ) lmr ratio test likelihood aic bic sabic entr opy - ll p cluster = class-ind. unrestricted Σk - . . . . . . . class-dep. diagonal Σk - . . . . . . . class-ind. diagonal Σk - . . . . . . . cluster = class-ind. unrestricted Σk - . . . . . . . class-dep. diagonal Σk - . . . . . . . class-ind. diagonal Σk - . . . . . . . cluster = class-ind. unrestricted Σk - . . . . . . . class-dep. diagonal Σk - . . . . . . . class-ind. diagonal Σk - . . . . . . . refractory eating disorders in youth table . means, standard errors, and anova results for the latent class indicators measured at initial intake assessment indicators class (n= ) class (n= ) class (n= ) f (p-value) body mass index (kg/m ) bc . (. ) . (. ) . (. ) . (. ) chronicity (in months) bc . (. ) . ( . ) . ( . ) . (. ) purging frequency ( wks) . (. ) . ( . ) . ( . ) . (ns) drive for thinness abc . ( . ) . (. ) . (. ) . (. ) body dissatisfaction abc . (. ) . ( . ) . (. ) . (. ) depressed mood (t-score) abc . ( . ) . ( . ) . ( . ) . (. ) anxiety (t-score) abc . (. ) . ( . ) . ( . ) . (. ) perfectionism abc . (. ) . (. ) . (. ) . (. ) interpersonal distrust abc . (. ) . (. ) . (. ) . (. ) impulsivity abc . (. ) . (. ) . (. ) . (. ) ineffectiveness abc . (. ) . ( . ) . (. ) . (. ) a significant difference between class and class b significant difference between class and class c significant difference between class and class refractory eating disorders in youth table . results of latent profile analysis with residual change scores (n= ) lmr ratio test likelihood aic bic sabic entr opy - ll p cluster = class-ind. unrestricted Σk - . . . . . . . class-dep. diagonal Σk - . . . . . . . class-ind. diagonal Σk - . . . . . . . cluster = class-ind. unrestricted Σk - . . . . . . . class-dep. diagonal Σk - . . . . . . . class-ind. diagonal Σk - . . . . . . . cluster = class-ind. unrestricted Σk - . . . . . . . class-dep. diagonal Σk - . . . . . . . class-ind. diagonal Σk - . . . . . . . refractory eating disorders in youth table . means, standard errors, and anova results for the residual change scores across the first treatment encounter indicators class (n= ) class (n= ) class (n= ) f (p-value) body mass index (kg/m ) ac -. (. ) . (. ) -. (. ) . (. ) length of stay (days) ab . ( . ) . ( . ) . ( . ) . (. ) drive for thinness abc - . (. ) - . (. ) . (. ) . (. ) body dissatisfaction abc - . (. ) - . ( . ) . (. ) . (. ) depressed mood abc - . ( . ) - . ( . ) . ( . ) . (. ) anxiety abc - . ( . ) -. ( . ) . ( . ) . (. ) perfectionism ab - . (. ) . (. ) . (. ) . (. ) interpersonal distrust abc - . (. ) -. (. ) . (. ) . (. ) impulsivity abc - . (. ) -. (. ) . (. ) . (. ) ineffectiveness abc - . (. ) - . (. ) . (. ) . (. ) a significant difference between class and class b significant difference between class and class c significant difference between class and class refractory eating disorders in youth growth trajectories of maintenance variables related to refractory eating disorders in youth refractory eating disorders in youth abstract eating disorders (eds) rank as the third most common chronic illness among adolescent females, and high rates of relapse and chronicity are often seen. in spite of decades of ed research, longitudinal studies of factors involved in refractory eds, defined as requiring a return to same-type treatment, are still lacking. the objective of the current study was to investigate longitudinally, the role of the additional maintenance variables found in fairburn et al’s., model ( ) for their role in refractory eds. participants in this study consisted of adolescents with a moderate to severe ed, who underwent intensive specialized treatment. growth trajectories of data collected during the initial intake assessment, at pre and post treatment and at month and year follow-ups were explored. a confirmatory factor analysis (cfa) was performed in order to investigate whether the four additional maintenance factors could be joined to create a summary maintenance factor, and hierarchical linear modeling (hlm) was used to explore growth trajectories of this summary factor. the results of the cfa demonstrated that the four additional maintenance factors do share similar properties, and therefore all load well onto a common summary maintenance factor. results of the hlm revealed that a significant cubic growth pattern exists when examining the summary maintenance factor over time, wherein there is a slight increase in symptoms while waiting for treatment to begin, then a decline in symptoms with treatment, followed by a slight rebound of symptoms during follow-up. this suggests that the intensive specialized ed treatments are successful at decreasing those factors thought to be involved in maintaining an ed by post treatment, although the lasting benefits of this treatment is still not clear. further clinical implications of these findings are discussed. refractory eating disorders in youth growth trajectories of maintenance variables related to refractory eating disorders in youth eating disorders (eds) rank as the third most common chronic illness among adolescent females (fisher et al., ), with reports indicating a -year reduction in lifespan when the age of onset occurs between to years of age (norris, bondy, & pinhas, ). eating disorders also have one of the highest rates of medical complications among any of the psychiatric disorders (mitchell & crow, ), and are frequently associated with greater psychological comorbidities and severe life impairment (ackard, fulkerson, & neumark-sztainer, ; godart, flament, perdereau, & jeammet, ; hudson, hiripi, pope, & kessler, ). also concerning is the ‘unusual tenacity’ of these disorders (strober et al., ), and the high rates of relapse and chronicity often seen with eds (richard, bauer, & kordy, ). current trends of long-term ed outcome studies reveal a poor prognosis. in the adult ed literature, published relapse rates vary from % (olmsted, kaplan, & rockert, ) to % (field et al., ), and -year follow-up review studies of anorexia nervosa (an) report that only . % make a full recovery, . % have residual symptoms, . % remained severely ill and chronic, and . % died of an-related causes after years (steinhausen, ). the prognosis for those with bulimia nervosa (bn) presents with a similar picture, with estimates of % to % attaining remission (ben- tovim et al., ; grilo et al., ; herzog et al., ; keel et al., , ), and review studies of long-term follow-ups revealing recovery rates of just over % after to years (p. keel & mitchell, ). the large discrepancies found in these studies have been attributed to the differing operational definitions of recovery or relapse, the refractory eating disorders in youth varying follow-up periods studied spanning from months to years (e.g. salbach- andrae et al., ; strober et al., ), the small clinical sample sizes, and the diagnostic and sampling heterogeneity of the studied samples (holle et al., ). a consequence of this inconsistency is that a reliable account of relapse and recovery in eds remains unclear. in spite of decades of ed research, identifying those individuals who might be at risk of poor long-term outcomes is still under debate. this may be because a clear definition of relapse and recovery, as it applies to the eds, is still not agreed upon across clinicians and researchers (quadflieg & fichter, ; steinhausen, ; walsh, ). although recovery, relapse, and long-term outcomes all vary in definition and operationalization across the ed literature, what is certain is that those who return for a second or third course of the same type of treatment represent those individuals who have experienced a true relapse. thus, those individuals who require a return to treatment could be conceptualized as having a refractory course of illness. the term refractory in medical terminology refers to those individuals whose illness is resistant to treatment (us national library of medicine, ), which coincides with the proposed definition. limited research on refractory eds has been conducted in adolescent populations, even though it is well documented that eds have their onset in adolescence (bryant- waugh, ; lock & gowers, ). even more scarce are the number of adolescent studies that have examined ed trajectories over time, leading to a dearth of understanding as to the mechanisms of change in ed symptoms and their persistence. the need for longitudinal studies in clinical samples of adolescents that examine ed refractory eating disorders in youth related factors over time and treatment are essential to explore what maintains this disorder. relatively few theories have been proposed to explain what maintains an ed. fairburn and colleagues’ (fairburn et al., ) cognitive-behavioural model for bulimia nervosa is among the first eating pathology maintenance model that has been proposed and empirically tested (byrne & mclean, ). this model posits that dietary restraint, eating, weight and shape over-concern and evaluation is the primary maintaining factor in binge eating. the model further contends that the binge eating in turn leads to the use of extreme compensatory behaviours in pursuit of the thin ideal. in this fashion, dieting is conceptualized as a mediator between appearance over-evaluation and bulimic symptoms, providing a maintenance factor to the disordered eating. the term maintenance factor is often cited in this literature as those variables thought to maintain the disease state. stice ( ) defined maintenance factors as those that predict symptom persistence versus symptom remission. in his review of risk and maintenance factors involved in eating pathology (stice, ) he found support for four maintenance factors of eating pathology: a) thin ideal internalization, b) body dissatisfaction, c) negative affect, and d) perfectionism. in , developers of the cognitive behavioral-maintenance model for bn refined their model to allow it be transdiagnostic, and to include four additional maintenance factors (fairburn, cooper, et al., ). according to their new transdiagnostic theory of the maintenance of eds, certain individuals with eds will have one or more of the four additional maintenance factors interact with the original three core eating disorder pathology factors (over-evaluation of eating, shape and weight and refractory eating disorders in youth their control) and this acts as an obstacle to change. the four additional maintenance factors that these authors propose are: core low self-esteem, interpersonal difficulties, perfectionism, and mood intolerance. they argue that the model should apply to all three major categories of eds (an , bn and ednos), as these ed categories are theorized to share the same distinctive psychopathology, and evidence suggests that patients migrate between these diagnostic states over time (tozzi et al., ). empirical support for this model as a transdiagnostic theory is beginning to emerge in adult samples (e.g. tasca et al., ). similarly, support for this model in younger age groups has also emerged, with a recent study investigating this model in an adolescent community sample of binge eating disorder (allen, byrne, & mclean, ). research examining this theory and the applicability of the additional maintenance factors in a clinical transdiagnostic sample of adolescents with eds is still non-existent, despite the need to better understand this ed trajectory in clinical samples of youth. an examination of the properties of the transdiagnostic model over time may provide a more accurate account of how these factors operate to maintain the ed. although some studies have emerged that examine the maintenance factors involved in refractory eds, they are limited to cross-sectional designs (e.g. lampard et al., ). examining this model in adolescence using a longitudinal developmental approach could contribute much needed knowledge to the field. therefore, a longitudinal growth curve study of adolescent eds that examines change in the maintenance factors postulated to play a role in refractory eds is proposed for the current study, as such research is strongly needed to help support this model and understand the developmental nature of how these factors are changing and influencing the course of an ed in adolescents. refractory eating disorders in youth to date, there are no studies that have examined the growth trajectories of adolescent eds relating to maintenance factors. there is also a paucity of studies that have examined maintenance factors related to refractory eds using longitudinal data. the lack of studies that examine individual change in these factors has limited the identification of factors involved in refractory eds, and impedes the development of more tailored treatment programs aimed at reducing the incidence of a refractory ed. exploring maintenance factors, refractory course of illness, and growth trajectories of illness in adolescents will allow for better identification of patients at risk for a refractory course. the aim of the current study was to explore the growth trajectories of the four additional maintenance variables across five time points in a clinical sample of adolescents with eds. the five time points to be examined include the initial intake assessment, pre and post first treatment course measurement, and months and -year follow-ups. this study will provide one of the first examinations of ed maintenance profiles over the course of multiple time points for adolescents who receive intensive treatment for a moderate to severe ed. the first objective of this study is to examine whether the four additional maintenance variables can be combined to create a summary maintenance factor. a confirmatory factory analysis (cfa) will assess whether this measurement model provides a good fit, and whether the four scores reliably and validly measure a maintenance summary score. as previous studies have confirmed a significant measurement model amongst the additional maintenance variables in adult samples refractory eating disorders in youth (tasca et al., ), it is likely that these factors will share similar properties in an adolescent sample. the second objective of this study was to explore the growth trajectories of the summary maintenance factor in a longitudinal fashion. as no evidence exists that has explored the phenomenon of maintenance factors over time in a large clinical sample of youth with moderate to severe eds, a clear hypothesis of the relationship between the variables and the shape of the trajetories was not possible. with evidence showing that many psychologogical symptoms are relieved with intensive ed treatment (e.g. lock et al., ; le grange, crosby, rathouz, & leventhal, ), and that there is usually a slight rebound of symptoms once intensive treatment has terminated (lowe, davis, annunziato, & lucks, ), it was hypothesized that a non-linear growth pattern would exist. more specifically, a quadratic or cubic type growth pattern is predicted, wherein there may or may not be an increase in maintenance symptoms while waiting for treatment to initiate, which would subsequently be followed by a decrease in symptoms while involved in intensive treatment, which would then be followed by a possible increase in symptoms once the individual has left the therapeutic environment. the third objective was to examine whether variability exists in the growth curves, and if present, whether the addition of a between-person predictor helped explain some of the variability in the maintenance scores. the person-level predictor that was explored in the current study was refractory status, defined by a return to same-type treatment. it was hypothesized that this predictor would partially explain some of the variability found in the summary maintenance score across individuals. refractory eating disorders in youth methods participants the sample consisted of ed patients who received specialized inpatient and/or day hospital treatment between january and january from a tertiary care hospital located in ottawa, canada. mean age of the sample was . years (sd= . ), and ranged from . to . years of age. there were females ( . %) and males ( . %). data retained for use in this study consisted of participants’ self- report measures collected at the initial intake assessment, pre and post-treatment across the first treatment course, and at -month and -year follow-up from initial intake assessment. participants were excluded from analysis if they received outpatient care exclusively, or if their follow-up measurements occurred before treatment was initiated (i.e. those patients who did not require intensive treatment until year after initial assessment). description of eating disorder program participants of this study consisted of individuals who were treated by the regional ed program located at the children’s hospital of eastern ontario. the population treated includes children and adolescents aged to years from across the province, serving a population of approximately . million. patients are referred through three channels, either via their family physician, the local emergency department, or through a provincial network. two specialized group-based intensive programs are offered: inpatient or day hospital services. both programs are group-based integrated programs primarily based on maudsley family-based treatment (fbt) principles (lock & fitzpatrick, ), wherein the parents are empowered to support their child in recovery. refractory eating disorders in youth the program also incorporates some components of cognitive-behavioural treatment, dialectical behaviour therapy, mindfulness, expressive arts therapy, pet therapy and interpersonal therapy. day hospital program. the day hospital eating disorder program has been in operation since , and represents the first specialized partial hospitalization treatment program offered in the region. the program has a maximum capacity of youth, and operates from am to pm days per week. the typical length of program is - weeks, and approximately patients are treated each year. during the course of the program, all recipients receive group therapy, meal support, academic support, therapeutic outings, and individual and family therapy. this program is often used as a step-down treatment plan for those who successfully complete the inpatient program. inpatient program. since the formal opening of the program in january of , the inpatient eating disorder program has treated approximately to children and youth each year, with average lengths of stay ranging from to days. this group- based treatment program has six inpatient beds, allocated on a shared child psychiatric ward of a local tertiary care pediatric hospital. the main goal of the specialized inpatient program is medical stabilization, although normalization of eating, nutritional rehabilitation, and reduction of comorbid symptoms is also a focus. individual and fbt are also essential to the inpatient program. maudsley principles of empowering parents to support their child in recovery (lock & fitzpatrick, ). refractory eating disorders in youth assessment measures demographic data. the demographic variables age, gender, bmi, diagnosis, treatment modality, and chronicity of illness at assessment were collected from clinical charts. these data were employed mostly for descriptive purposes. eating disorder inventory – (edi- ; garner, ). the edi- provides a comprehensive assessment of the behavioral and psychological dimensions characteristic of eds. the edi- is a reliable and valid -item multidimensional self-report instrument that assesses characteristics of eds, with higher scores indicating more severe symptomatology and/or more pathological attitudes and cognitions. the edi- is divided into subscales and has been found to have good psychometric properties. the specific subscales and corresponding internal consistency values (derived from an adult clinical ed sample of women aged to years) for those indices to be used in the current study are: drive for thinness (. ), body dissatisfaction (. ), perfectionism (. ), impulse regulation (. ), ineffectiveness (. ) and interpersonal distrust (. )(eberenz & gleaves, ). these values provide evidence of good internal consistency for those subscales to be used in the current study. possible ranges for these subscale scores are presented in table . as has been done in previous studies (tasca et al., ), the additional maintenance model constructs of mood intolerance will be measured using the impulse regulation subscale, the construct of core low self-esteem will be measured using the ineffectiveness subscale, and the construct of interpersonal difficulties will be measured using the interpersonal distrust subscale score. refractory eating disorders in youth procedures this study consists of secondary use of clinical data retrieved with permission from the cheo eating disorder program. one of the clinical components of the program surrounds the use of psychometric measures to aid in evaluating the patient’s recovery over time, thus a battery of clinically useful measures were administered to the patients at various intervals throughout treatment in order to help in understanding the patients needs. measures used in the current study were collected at the initial intake assessment, pre and post the first treatment encounter, and at months and -year follow-up. the research ethics boards at the children’s hospital of eastern ontario and at the university of ottawa approved this study. analytic plan the first objective of this study was to determine whether the four additional maintenance variables described in fairburn et al.’s model ( ) could be combined to create a summary maintenance factor that could then be modeled over time. a confirmatory factor analysis (cfa) using the analysis of moment structures program (amos; arbuckle, ) version was used to test the measurement model. the criteria used to assess model fit were the comparative fit index (cfi) and root mean square error of approximation estimates. these criteria were used as they are least affected by sample size (fan, thompson, & wang, ), and have been deemed the most useful measures of model fit (thompson, ). a cfi estimate of . or greater, and a rmsea estimate of less than or equal to . are considered good model fit (hu & bentler, ; schumacker & lomax, ). refractory eating disorders in youth the second aim of the current study was to examine change over time, or growth trajectories, of the summary maintenance variable, and to explore whether certain predictors helped explain any inter-individual variability that exists in the growth patterns. in order to pursue this goal, hierarchical linear modeling (hlm) was employed using hlm software (raudenbush, bryk, & congdon, ). this type of analysis is best conceptualized as a two level type of analysis (bryk & raudenbush, ; singer & willett, ). in the first stage, the level model examines person-specific growth rates and is commonly referred to as the within-person or intra-individual change model. the second stage of the model, or the level model, is commonly referred to as the inter- individual change model, as it captures between-person variability in the growth rates. that is, once it is established that variability exists in the growth curves, predictors can be added to the model to try to estimate those characteristics that help explain the variability. specifically, time-invariant predictors (e.g., gender, ethnicity) can be included at level , to try to explain the variability in the growth curves, whereas time-variant predictors are usually added to the level model. another important benefit of hlm is that it has tremendous flexibility when it comes to missing data. this type of analysis can easily incorporate all individuals who have at least one time point, as long as the missing data is missing at random (raudenbush & bryk, ), as is the case in the current dataset. in the current study, several growth models were explored at level as it was hypothesized that a non-linear growth pattern existed across the time points. to find the best fitting and most parsimonious model, first a linear model was explored, followed by a model with linear and quadratic growth terms, and then a model with linear, quadratic and cubic terms. differences between deviance scores derived using full maximum refractory eating disorders in youth likelihood were then computed in an attempt to isolate the best-fitting model. the following models were examined, with all time terms centered at the post treatment score (midpoint). level : maintenance = π + π (time) + π (time ) + π (time ) + e level : π = β + r π = β + r π = β + r π = β + r further, a dichotomous time-invariant predictor, refractory status ( =single-episode, =refractory), was added as a level predictor, to study whether it helped explain some of the variability in the individual growth curves. the following model that includes the level predictor was tested: level : maintenance = π + π (time) + π (time ) + π (time ) + e level : π = β + β (refractory status) + r π = β + β (refractory status) + r π = β + β (refractory status) + r π = β + β (refractory status) + r centering of the time variable was created at the middle point, as it has been shown that mid-point centering is desirable when examining higher-order polynomials in growth curves. as raudenbush and bryk ( ) point out, centering in the middle will define the linear slope as the ‘average velocity’ during the data collection period specified (i.e. not at the initial onset), and it also minimizes the correlation between the time parameters with the desired effect of stabilizing the estimation procedure. therefore in the current refractory eating disorders in youth study, the time points were centered at time point or at post-treatment. using this centering point, the linear model then studied whether a straight line best explained the maintenance trajectory across the five timepoints. the quadratic model explored whether a decrease in maintenance scores is expected at post treatment followed by an increase in maintenance factors during the follow-up periods. the cubic model studied whether there was an initial increase in the summary maintenance factor between initial assessment and the commencement of treatment, which was followed by a decrease pre to post treatment, and then an increase in symptoms again during follow-up. results descriptive statistics data from a total of youth who presented for an ed assessment at a local tertiary pediatric hospital and who received intensive services were included in this study. of the original participants who were eligible for this study, were excluded on the basis that their -month follow-up occurred prior to their pre and or post treatment data points. based on a consensus diagnosis, ( . %) youth were diagnosed with an, ( . %) were diagnosed with bn, and ( . %) were diagnosed with ednos. when defining refractory disease as a return to intensive treatment, ( . %) adolescents in the sample are classified to the refractory group and ( . %) are classified to the single-episode group. descriptive details of the indicator variables at all timepoints are provided in table . before analyses were conducted, the data were subjected to a missing value analysis, which showed that missing data in this sample were missing at random (little, ). refractory eating disorders in youth confirmatory factor analysis of summary maintenance variable a confirmatory factor analysis was performed in order to test whether the four additional maintenance variables could be combined to create a summary maintenance factor. the variables perfectionism, interpersonal distrust, impulse regulation and ineffectiveness were placed into a measurement model in amos and were tested for their model fit. figure depicts the model that was tested. the results of the analysis reveal an excellent model fit, with ( )= . , p=. , and cfi = . and rmsea = . ( % ci: . to . ). the results of this cfa demonstrate that the four additional maintenance variables do indeed load adequately onto one overarching factor, and therefore a summary maintenance variable is warranted. given the good model fit and that all four subscales are derived from the same instrument, the summary maintenance factor for each timepoint was thus defined as the weighted mean of perfectionism, interpersonal distrust, impulse regulation and ineffectiveness. to create this factor score, each indicator was multiplied by its respective factor loading prior to being calculated as a mean, in order to take into account the weighting of each indicator. growth curve trajectories the second objective of the current study was to explore the growth trajectories of the summary maintenance factor in a large transdiagnostic sample of youth with eds. this includes identification of the correct form of growth (e.g., linear, quadratic, or cubic), as well as specification of the variance of the individual growth estimates (e.g., intercept and slope). a graph of the mean levels of the summary maintenance factor across all five time points suggests a cubic growth curve pattern exists (see figure ). refractory eating disorders in youth according to the graph, average levels of the summary maintenance factor initially increased just slightly between the initial intake assessment and pre-treatment, then decreased during treatment, and then increased again during follow-up. the difference test of the deviance statistics between the linear and quadratic model was significant [ ( ) = . , p < . ] indicating that the quadratic model was a better fit than the linear model. the difference test between the cubic and quadratic model was significant [ ( ) = . , p < . ] suggesting that a cubic growth curve better models the summary maintenance factor trajectory than a quadratic curve. several growth parameters were estimated for the summary maintenance variable, where first a linear model was fit, then a linear and quadratic model were tested, and lastly a linear, quadratic and cubic model were fit. results of the analysis show that all but the quadratic term emerged as a significant growth pattern (see table ). that is, significant linear and cubic growth patterns were found, and although the linear model would be more parsimonious, the significant cubic growth pattern suggests that this type of model better fits the data. table provides the estimates of the growth curve. the results of this analysis reveal that there was a significant linear trend across the five timepoints, and the sign of the coefficient signals a decreasing linear trend from initial intake to year follow-up. there was also a significant cubic pattern that emerged, which revealed an s-shaped pattern of growth across all timepoints. this pattern of change was one where it first increased (intake to pre), then decreased (pre to post), then subsequently increased again (post to follow ups). the cubic variance component was significant in this model, indicating that these curves vary across all individuals in the refractory eating disorders in youth sample. this significant variance term also suggests that between-person (level ) predictors could be added to the model to try to explain this variability. refractory status as a predictor of variability in growth curves as viewed in table , refractory status only significantly predicted the variability in the intercept and linear relationship (p<. ). although significant growth parameters emerged from this analysis, wherein the linear and cubic portions of the model were again evident, the addition of refractory status did not significantly aid in the prediction of the variability in the cubic growth pattern found. discussion the first aim of this study was to confirm a measurement model of a summary maintenance factor constructed from the four additional maintenance factors described in fairburn’s and colleagues maintenance model ( ). the results of the cfa demonstrated that the four additional maintenance factors do share similar properties, and therefore all load well onto a common latent variable labelled here, a summary maintenance factor. in fact, the estimates calculated for this model indicate a very well- fitting model, suggesting that a common construct best represents these four factors. the confirmation that this model indeed exists amongst these variables has several beneficial implications. mainly, the finding that these four factors can be combined to create a overarching latent variable that estimates the additional maintenance variables, opens many avenues for future research of this factor. from a clinical standpoint, the combination of these variables to describe a maintenance risk factor that could be used in assessment and ongoing treatment decisions could also be beneficial. as the measured variables that form the summary maintenace factor are all derived from the same self- refractory eating disorders in youth report questionnaire (edi- ), the computation of this factor for clinical purposes can easily be derived and reported in a variety of clinical settings. lastly, the emergence of a overarching factor that summarizes the theoretically driven variables described in the maintenance model (fairburn, cooper, et al., ) suggests that ed treatments directed at reducing any of the additional maintenance factors will have effects on the others, as these variables share common traits as factors involved in maintaining an ed. the second objective of this study was to model the growth patterns of the summary maintenance factor over time and treatment. using the summary maintenance factor score developed in the first aim of this study, an examination of the growth curves was performed. results from this analysis confirmed a non-linear cubic growth pattern for the summary maintenance factor. more specifically, there was an increase in the summary maintenance factor level from intake to pre treatment, which was followed by a decrease to post treatment, which was subsequently followed by another increase during follow-up. this growth trajectory suggests that the intensive specialized treatments being offered to youth suffering with a moderate to severe ed are successful at decreasing those factors thought to be involved in maintaining an ed by post treatment. the results of this analysis also indicate that this growth curve applies to all types of eds, revealing similar growth patterns transdiagnostically. clinicians and treatment providers should continue to address similar issues in treatment as they are found to have therapeutic effects on these maintenance factors, across all ed categories. the increase in symptoms in the follow-up period suggests that treatment does not necessarily have lasting effects on the maintenance factors past the end of the treatment. future studies should invesigate what types of interventions would be more beneficial in sustaining the gains in the refractory eating disorders in youth maintenance factors that are achieved with treatment, such as offering a recovery group on an outpatient basis that focuses on the additional maintenance factors as one of its treatment components. another finding of the analysis of the growth trajectories is that a significant amount of variability existed in the cubic growth parameter, meaning that indviduals in this sample had differing growth curves with regards to their summary maintenance factors. the last objective of this study was to explore whether refractory status could help explain some of the different trajectories found. refractory status did not significantly predict the variability in the growth curves of the summary maintenance factor. this result suggests that the curves varied significantly across the included in the study, but that refractory status did not help explain why these curves were differing across the individuals. therefore, other factors are affecting how the progression of the maintenance factors differs across patients. future studies should investigate other between-person predictors that may help explain some of the variability found in these curves. predictors such as diagnosis, age, type of treatment received, and completion status would provide a good start to exploring this. limitations limitations of this study were the use of self-report measures, which in a disorder that is known for its egosyntonic properties (vitousek, watson, & wilson, ), may have led to some under-reporting due to the denial component of the disorder. other limitations concern the lack of longer follow-up periods to explore further growth of these trajectories, and the upper age limitation imposed when performing longitudinal investigations of adolescent samples. a further limitation were the few demographic refractory eating disorders in youth characteristics (i.e. ethnicity or socioeconomic status) that were not captured in the dataset, preventing any analysis of these demographics and their relation to the growth curves. future directions as one of the first studies to explore longitudinally the growth trajectories of the maintenance factors in a clinical sample of youth with eds, much further research concerning this line of questioning is necessary to fully understand these phenomena. future studies should strive to replicate the results of the cfa in both adult and non- clinical adolescent samples, in order to understand whether these factors merit conceptualization as part of a larger factor across all populations. in addition, future work should aim to examine growth curves over a number of different treatment encounters to learn more about treatment effects and lasting effects across different relapses. this would allow for the exploration of what occurs with each additional treatment encounter, and may help answer whether additional treatment is beneficial at providing therapeutic effects for the maintenance factors. further, studies examining the growth curves of the maintenance factors into adulthood would also provide a more accurate account of what these growth patterns look like past adolescence, as this study was limited to a youth sample. lastly, future studies should also aim to explore whether other demographic variables, such as diagnosis, age, or ses can help explain some of the variability in these growth curves. the addition of psychosocial variables, such as body dissatisfaction or ed chronicity as levels predictors to help explain some of the variability found in the slopes would also be informative. refractory eating disorders in youth conclusions growth curve analyses are a desirable statistical technique to study individual growth over time. in the current research, the exploration of the growth patterns of a summary maintenance factor across treatment and beyond illuminates our understanding of these factors and how they are related to refractory eds. the combined additional maintenance factors of eds do appear to follow a cubic growth pattern, wherein there is a slight increase in symptoms while waiting for treatment to begin, followed by a decline in symptoms with treatment, followed by a rebound of symptoms during follow-up. it is clear from these growth curves that the maintenance factors of adolescents with eds do improve with intensive specialized ed treatment, although the lasting benefits of these treatments is still unclear. the need to have ongoing targeted treatment aimed at reducting inpulsivity and perfectionism and increasing self-esteem and interpersonal trust in those adolescents at risk of a refractory ed, may decrease the need for a repeat visit, and shorten the length of a refractory course of illness. further, the findings of this study also provided some preliminary evidence that the levels of the summary maintenance vary across individuals. although it was anticipated that refractory status may help explain some of that variability, it was not found to be a signficant predictor. other demographic and related variables should be examined for their role in explaining some of this variability. much more research is strongly needed to fully understand the growth patterns of these maintenance variables, as these factors can be a key ingredient to understanding refractory eds and what prolongs or maintains these devastating disorders. refractory eating disorders in youth references ackard, d. m., fulkerson, j. a., & neumark-sztainer, d. 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( ). recovery from eating disorders. the australian and new zealand journal of psychiatry, ( ), - . doi: . / . refractory eating disorders in youth table . means and standard deviations of indicator variables according to timepoint. summary maintenance factor n perfectionism interpersonal distrust impulsivity ineffectiveness initial intake assessment . ( . ) . ( . ) . ( . ) . ( . ) pre-treatment . ( . ) . ( . ) . ( . ) . ( . ) post-treatment . ( . ) . ( . ) . ( . ) . ( . ) month follow-up . ( . ) . ( . ) . ( . ) . ( . ) year follow-up . ( . ) . ( . ) . ( . ) . ( . ) refractory eating disorders in youth table . growth curve estimates for the summary maintenance factor coefficient standard error d.f. t-ratio p-value fixed effects intercept, β . . . < . linear slope, β -. . - . < . quadratic slope, β -. . -. . cubic slope, β . . . < . standard deviation variance d.f. p-value random effects intercept, r . . . < . linear slope, r . . . < . quadratic slope, r . . . . cubic slope, r . . . < . refractory eating disorders in youth table . growth curve estimates for the summary maintenance factor with refractory status as a time-invariant predictor coefficient standard error d.f. t-ratio p-value fixed effects intercept, β . . . <. refstatus, β . . . . linear slope, β -. . - . <. refstatus, β . . . . quadratic slope, β . . . . refstatus, β -. . -. . cubic slope, β . . . <. refstatus, β -. . - . . standard deviation variance d.f. p-value random effects intercept, r . . . < . linear slope, r . . . < . quadratic slope, r . . . . cubic slope, r . . . < . refractory eating disorders in youth figure . standardized estimates of measurement model for the summary maintenance factor. perf=perfectionism; inter=interpersonal distrust; impulse=impulsivity; ineffect=ineffectiveness; n= ( )= . , p=. ; cfi = . ; rmsea = . ( % ci: . to . ) . . . . refractory eating disorders in youth figure . growth curve pattern of summary maintenance factor for full sample refractory eating disorders in youth general conclusion refractory eating disorders (eds) in adolescents are understudied and poorly understood. despite the high prevalence rates of refractory eds in this population (richard, bauer, & kordy, ), and the multi-faceted severe consequences associated with a refractory course of illness (kaplan & strasburg, ; strober, ), limited research still persists. the current project aimed to fill this significant gap in the literature, and proposed three main studies to better understand refractory eds in an adolescent population. the objective of the first study was to explore predictors of refractory eds. the goal of the second study was to examine whether unique profiles based on predictors from the first study, were capable of identifying single-episode versus different types of refractory groups. the third study examined the trajectories of a subset of predictors specifically implicated in the maintenance of an ed. this was performed in order to better understand how these predictors were involved in adolescent refractory eds, both longitudinally and across intensive treatment. together the three components of this research project provided a unique examination of refractory eds in youth cross- sectionally and longitudinally, across treatment, and across different measurement points. as one of the first examinations of a transdiagnostic sample of adolescents with refractory eds, these studies provide important preliminary evidence to guide healthcare professionals with assessment and treatment decisions, and also provide a foundation for which future research on refractory eds in adolescents can be built. one of the primary findings of this research is that a set of theoretically related predictors of refractory eds assessed at initial intake, reliably predicted refractory status (single-episode versus refractory). this provides one of the first evidence-based accounts refractory eating disorders in youth of those characteristics that will allow clinicians to assess, very early on in presentation, which individuals may be more likely to suffer from a refractory course of the disorder. the results of this first study showed that an acute onset of the disorder, higher purging frequency, elevated levels of body dissatisfaction, and lower levels of depressed mood all significantly and uniquely added to the accurate prediction of refractory status. in addition, four further variables were included based on their affiliation as additional maintenance factors in fairburn and colleagues ( ) transdiagnostic cognitive- behavioural maintenance model of eds. three of the four additional maintenance factors also emerged as unique significant predictors (ineffectiveness, interpersonal distrust and impulse regulation) while taking into account the other variables in the model, adding both strength and generalizability of these additional maintenance factors as active agents in refractory eds in youth. together these findings suggest that this set of predictors is useful in differentiating between single-episode and refractory cases, and that attention should be given to these variables at initial assessment as they have good predictive ability of the likelihood of a refractory ed in adolescents. the results of the second study established that different profiles exist when examining the similarities amongst ed related and additional maintenance indicators. this study also revealed that regardless of whether you examine initial intake assessment data or residual change scores of pre to post change across the first treatment encounter, three types of groups exist. although the profiles found across the two types of data were not synonymous, the resulting classifications suggest that three distinct profiles emerge when examining refractory and maintenance related variables together in a model. the implications of these classification results are significant in that they provide one of the refractory eating disorders in youth first depictions of the different types of profiles that exist in a clinical sample of youth with eds when studying ed related and additional maintenance characteristics. further, this study also allowed for a close look at how various data perspectives provide differing profiles. a comparison of two data captures concluded that how one progresses across the first treatment exposure versus predictors assessed at initial intake, provides more reliable and accurate identification of those at risk of suffering from a refractory ed. therefore, progress indicators should be examined carefully by clinicians for identification of a refractory ed, and monitoring of those with poor progress across treatment should be made for early detection of the presence of a refractory ed. the third study in this project examined the growth trajectories of the additional maintenance variables in a clinical sample of youth with eds. this is the first longitudinal examination of fairburn’s ( ) maintenance model of eds in a transdiagnostic adolescent sample. the findings revealed that a significant growth pattern existed for the maintenance trajectories, wherein there was a slight increase in these factors prior to treatment commencing, then a significant dip in these symptoms during the course of treatment, then a slight increase of these symptoms post treatment. these results suggest that intensive treatment is successful at reducing the effects of the maintenance variables, but that the lasting effects of this treatment on the maintenance variables have not yet been realized. in reviewing the results of the three studies, several conclusions can be drawn. one of the major aims of this research project was whether it was possible to identify refractory cases of eds at various points throughout treatment. the three studies allowed for the examination of different types of data, and to explore whether information from refractory eating disorders in youth the initial intake assessment, across the first treatment encounter or across time points spanning treatment and follow-up periods, could reliably identify adolescents most at risk of a refractory ed. the findings across the studies demonstrated that initial intake assessment characteristics were helpful and significant at identifying those at risk of developing a refractory ed at an accuracy rate of %. this suggests that early identification of these cases is possible, and that those variables implicated in refractory eds should be explored and considered during clinical assessments at initial intake. similarly, based on the results of the latent profile analysis of pre to post treatment scores, how an individual reacts or progresses through intensive ed treatment, also has some predictive value in identifying profiles of those with a possible refractory ed. although this type of data is not considered necessarily helpful in quick identification of refractory cases, these indicators were better at identifying those at risk of a refractory ed than profiles at initial intake. as both presenting characteristics as well as progress data across treatment have been implicated in relapse and recovery studies (e.g. castro et al., ; hebebrand et al., ), findings of the current studies suggest that indicators at initial intake can reliably predict refractory status, but that it is profiles of how one progresses across the first treatment encounter that provide a better method of identifying adolescents who might suffer from a refractory ed. therefore, in clinical settings, attention to both presentation characteristics as well as progress indicators could lend some important clinical information relevant to identification of refractory eds in youth. furthermore, the current studies also suggest that ongoing studies examining both types of predictors are warranted, as both types of predictors do provide useful, yet distinct, information regarding refractory eds. refractory eating disorders in youth another important finding of this project is the support found for fairburn and colleagues’ transdiagnostic cognitive-behavioral maintenance model of eds (fairburn, cooper, et al., ). very limited evidence exists regarding the applicability of this model to youth with eds, with only one study performed to date that investigated this model in a community sample of youth with binge eating disorder (allen, byrne, & mclean, ). furthermore, as this model is postulated to be transdiagnostic in its application, only a couple of adult studies examining this model in various ed diagnoses has been performed (lampard, byrne, mclean, & fursland, ; tasca et al., ). thus, the addition of the current studies to compliment the limited evidence examining this model, provides a unique application of this model to a large trandiagnostic sample of youth with an ed. findings of this research relate to the generalizability of this model to youth samples, and speaks to the developmental applicability of the additional maintenance variables in adolescent refractory eds. the findings across the project also allow for discussion regarding the transdiagnostic nature of refractory eds. as all types of eds were included in this research, the applicability of the findings to all three major ed categories is warranted. future studies should continue to be conducted in large transdiagnostic samples, and the investigation of diagnostic effects in youth samples would be a good next step. in addition, research investigating other developmentally relevant constructs that may also be involved in adolescent refractory eds, would be beneficial to fully understand the appropriateness of this model to younger samples. as constructs such as attachment (illing, tasca, balfour, & bissada, ) and parental self-efficacy (lafrance robinson, strahan, girz, wilson, & boachie, ) have been implicated in ed refractory eating disorders in youth recovery; the addition of these variables may provide a more comprehensive picture of how these variables affect refractory eds in youth. lastly, the confirmation that the four additional maintenance factors involved in this model do reliably map onto a larger construct in youth samples provides a valuable method in which to study these characteristics in combination. future research in various types of clinical and community-based samples should strive to confirm the generalizability of this measurement model, thus allowing for greater conclusions about the cohesiveness of these factors in representing a larger conceptual construct. the clinical and research benefits of such a construct could be used to better understand refractory eds and for tailoring of treatment goals towards reducing the effects of these maintenance variables. other clinical implications of this work are linked to early identification and treatment progress of characteristics theoretically related to refractory eds. primarily, this research project demonstrated that refractory eds can be identified early on in treatment, and therefore attention to these constructs at early points of treatment should be made. identification of those cases at risk of a refractory course of illness has multiple implications for the treatment provider, in that it allows for the tailoring of interventions towards the factors thought to maintain the disorder. furthermore, for those individuals who are at greatest risk of suffering from a refractory ed, treatment aimed at working on interpersonal trust, impulsivity, and lifting self-esteem, could reduce the amount of treatment required or the need for a return to treatment. although the results that emerged from the growth trajectory analysis suggest that intensive treatment is effective at reducing maintenance factors of eds, it also reveals limited lasting effects. this suggests that longer-term interventions geared at addressing the additional maintenance factors, refractory eating disorders in youth such as the use of outpatient recovery groups, are needed to continue the therapeutic effects gained during intensive treatment. further, the use of the operational definition of refractory eds as those who require more than one same-type treatment, allows for a reliable and valid method of identifying these cases. this research provides some preliminary evidence that this definition is adequate at summarizing this subgroup of eds, with evidence that initial intake variables could accurately differentiate between these two types of patients. further evidence that this definition is reliable, is that the latent profile analyses revealed significant association of this refractory status and those who do poorly at treatment, lending some justification that this group will require a return to treatment. thus, future studies should attempt to replicate the use of this definition in varying samples, in order to confirm whether this operational definition merits consideration as a global method in which to define this type of patient. in summary, although part of the original hypothesis of this work was that factors theoretically found to be involved in maintaining an ed would also differentiate between different types of refractory eds (recurrent versus chronic), the results of these studies failed to find evidence that this is possible in the early stages of treatment. it may be possible that either the chronicity of the disorder builds over time, or that it is exposure to multiple treatment encounters that leads to the differing type of refractory eds. also, due to the ceiling effects of conducting research with pediatric samples, it may also be possible that the differentiation between the types of refractory eds is not evident until adulthood. nonetheless, future longer-term studies that transcend through the developmental periods are necessary to fully explore this phenomenon. future research refractory eating disorders in youth should also aim to examine a more developmentally appropriate model of fairburn’s and colleagues ( ) model, potentially including constructs of attachment and parental efficacy in order to fully understand whether these constructs more accurately depict refractory eds in youth samples. further, applying this model to other disorders such as obesity in pediatric samples may also shed some light of how individuals are affected by these constructs. understanding refractory eds and their trajectories, and being able to identify those who are most at risk of suffering from this course of illness may provide benefits to the patient, their families, and to the treatment team and healthcare system (goldstein et al., ; richard et al., ; strober, ) by shortening the course of this illness. much more work is necessary before firm conclusions could be made about adolescent refractory eds, but this research provides some preliminary evidence that refractory eds are prevalent in these populations and that attention should be devoted to learning how best to identify and treat these cases. with estimates in this large transdiagnostic adolescent sample of eds finding that approximately % of adolescent cases will require anywhere between to treatment encounters for alleviation of symptoms of their ed, it is essential that researchers and clinicians make a concerted effort to understand how best to identify and manage these difficult and complicated cases. refractory eating disorders in youth references allen, k. l., byrne, s. m., & mclean, n. j. ( ). the dual-pathway and cognitive- behavioural models of binge eating: prospective evaluation and comparison. european child & adolescent psychiatry, ( ), - . doi: . /s - - -z castro, j., gila, a., puig, j., rodriguez, s., & toro, j. ( ). predictors of rehospitalization after total weight recovery in adolescents with anorexia nervosa. the international journal of eating disorders, ( ), - . doi: . /eat. fairburn, c. g., cooper, z., & shafran, r. ( ). cognitive behaviour therapy for eating disorders: a “transdiagnostic” theory and treatment. behaviour research and therapy, ( ), - . doi: . /s - ( ) - goldstein, m., peters, l., baillie, a., mcveagh, p., minshall, g., & fitzjames, d. ( ). the effectiveness of a day program for the treatment of adolescent anorexia nervosa. the international journal of eating disorders, ( ), - . doi: . /eat. hebebrand, j., himmelman, g., herzog, w., herpertz-dahlmann, b. m., steinhausen, h. c., armstein, m., seidel, r., et al. ( ). predictors of low body weight at long- term follow-up in acute anorexia nervosa by own body weight at referral. american journal of psychiatry, , - . refractory eating disorders in youth illing, v., tasca, g. a., balfour, l., & bissada, h. ( ). attachment insecurity predicts eating disorder symptoms and treatment outcomes in a clinical sample of women. journal of nervous and mental disease, , - . kaplan, a. s., & strasburg, k. ( ). chronic eating disorders: a different approach to treatment resistance. psychiatric times, ( ), - . lafrance robinson, a., strahan, e., girz, l., wilson, a., & boachie, a. ( ). “i know i can help you”: parental self-efficacy predicts adolescent outcomes in family-based therapy for eating disorders. european eating disorders review : the journal of the eating disorders association. doi: . /erv. lampard, a. m., byrne, s. m., mclean, n., & fursland, a. ( ). an evaluation of the enhanced cognitive-behavioural model of bulimia nervosa. behaviour research and therapy, ( ), - . elsevier ltd. doi: . /j.brat. . . richard, m., bauer, s., & kordy, h. ( ). relapse in anorexia and bulimia nervosa—a . -year follow-up study. european eating disorders review, ( ), - . doi: . /erv. strober, m. ( ). managing the chronic, treatment-resistant patient with anorexia nervosa. the international journal of eating disorders, ( ), - . doi: . /eat. tasca, g. a, presniak, m. d., demidenko, n., balfour, l., krysanski, v., trinneer, a., & bissada, h. ( ). testing a maintenance model for eating disorders in a sample refractory eating disorders in youth seeking treatment at a tertiary care center: a structural equation modeling approach. comprehensive psychiatry, ( ), - . elsevier inc. doi: . /j.comppsych. . . bundling interventions to enhance pain care quality (bite pain) in medical surgical patients original research ochsner journal : – , © academic division of ochsner clinic foundation doi: . /toj. . bundling interventions to enhance pain care quality (bite pain) in medical surgical patients karen l. rice, dns, aprn, acns-bc, julie castex, msn, aprn, acns-bc, margaret redmond, mn, aprn, acns-bc, jeffrey burton, phd, jia-wen guo, phd, rn, susan l. beck, phd, aprn, faan center for nursing research, ochsner clinic foundation, new orleans, la palliative medicine, ochsner clinic foundation, new orleans, la center for outcomes and health services research, ochsner clinic foundation, new orleans, la college of nursing, university of utah, salt lake city, ut background: inadequate pain management and undertreatment remain a serious clinical issue among hospitalized adults, con- tributing to chronic pain syndromes and opioid dependency. implementation of individual pain care interventions has been insufficient to improve pain care quality. the purpose of this interprofessional, patient-centered project was to implement a - component bundle of evidence-based pain management strategies to improve patients’ perception of pain care quality and -hour pain experience outcomes. methods: a quasi-experimental design was used to test the effect of a bundled pain management intervention on medi- cal surgical units. baseline outcomes using the pain care quality-interdisciplinary (paincq-i©) and pain care quality-nursing (paincq-n©) surveys were measured monthly for months preintervention and months postintervention. results: a convenience sample of patients was analyzed. the effect of the intervention on pain outcomes could not be tested because unit-based adherence did not meet the goal of %. a subsample of . % ( / ) of participants was sufficient to com- plete a -group analysis of preintervention and postintervention participants with confirmed intervention adherence. participants in the postintervention group who received all components (n= ) had significantly higher odds of higher paincq© scores than those in the preintervention group (n= ) (paincq-i©: odds ratio [or] . , % confidence interval [ci] . - . ; paincq-n©: or . , % ci . - . ) or those in the postintervention group receiving � components (n= ) (paincq-i©: or . , % ci . - . ; paincq-n©: or . , % ci . - . ). conclusion: medical surgical patients participating in this study who received the bundled -component intervention reported significantly higher levels of perceived pain care quality, suggesting that a bundled approach may be more beneficial than unstan- dardized strategies. keywords: acute pain, animal assisted therapy, aromatherapy, implementation science, interprofessional relations, music ther- apy, pain–postoperative, pain management, pain measurement, quality indicators–health care, quality of health care, surveys and questionnaires address correspondence to karen l. rice, dns, aprn, acns-bc, center for nursing research, ochsner clinic foundation, jefferson hwy., new orleans, la . tel: ( ) - . email: karen.rice @gmail.com introduction pain in the united states is a public health crisis of epi- demic proportions. approximately million americans suffer from acute and chronic pain at an annual cost reaching $ billion, more than the combined healthcare expendi- tures for diabetes, cardiovascular disease, and cancer. pain management is widely accepted as an important compo- nent of high-quality care and a strong contributor to patient satisfaction. - despite awareness and therapeutic improve- ments, inadequate pain management and undertreatment of pain remain a serious clinical issue among hospitalized patients, contributing to chronic pain syndromes and opi- oid dependency. , clearly, implementation of individual pain care interventions has been insufficient to improve patients’ perceptions of pain care quality. - therefore, there is a need to implement an innovative pain management intervention that ( ) actively engages the patient as a partner rather than a passive recipient of treatment; ( ) applies bundled interven- tions that are complementary and conceptually aligned; and ( ) improves patients’ ability to cope with pain by providing some predictability and engaging them in control regarding the plan of care. , literature review a review of the published literature cited in ovid med- line and cinahl focused on exploring the effectiveness of volume , number , summer bite pain therapytm outcomes of pharmacologic and nonpharmacologic nursing interventions in reducing acute and chronic pain in adult hos- pitalized patients. four systematic reviews and original research studies published from - were critiqued for level of evidence using the centre for evidence-based medicine guideline and provided the basis for the interven- tion in this research study. the literature synthesis is briefly described beginning with the highest level of evidence (systematic reviews). four systematic reviews supported a benefit in pain outcomes related to patient pain education, therapy, and non- pharmacologic therapy. , six randomized controlled tri- als described beneficial pain management outcomes from patient education and nonpharmacologic therapy. - two quasi-experimental studies supported a benefit in pain outcomes related to structured pain rounds and nonphar- macologic therapy. thirteen descriptive, comparative, or correlational designs described positive pain care quality outcomes associated with patient pain education, pain and coping assessment strategies, - communication of pain management plans, pharmacologic therapy, and non- pharmacologic therapy. - although pharmacologic agents have been the mainstay of pain management, synthesis of this body of knowledge suggests that the evidence is insufficient to support a spe- cific nursing intervention that effectively manages pain. yet case studies that tested individual nonpharmacologic inter- ventions in the pain care quality study reported by potter et al reported a potential benefit for hospitalized adults at single sites. interventions described in the liter- ature review supporting this study were associated with a potential benefit as adjuncts to pharmacologic therapies that included patient education, clinical pathways, teaching patients coping strategies, and various nonpharmacologic therapies (massage, relaxation, guided imagery, pet ther- apy, music therapy, prayer, distraction) in improving patients’ perceptions of pain management. none of these interven- tions was found to be harmful or of less benefit than usual care. however, despite the state of knowledge about various adjunctive strategies to individualize pain management in hospitalized adults with acute and chronic pain syndromes, important substantive and theoretical questions exist. these gaps include that little or no knowledge exists regarding the effect of bundling pain care strategies on patients’ percep- tions of pain care quality. however, structured quality improvement initiatives and observational cohorts using bundled interventions to improve hospital outcomes in ventilator-associated pneu- monia (vap) , and septic shock , support improvement in these outcomes when bundle adherence with completing all bundle components reaches and exceeds % over time. although quality improvement and observational stud- ies are not strong evidence to support the role of bundle adherence in improving quality outcomes in vap and septic shock, the literature does support a relationship between bundle adherence and quality outcomes. - therefore, it seemed plausible to test the same bundling concept using the % adherence goal in implementing all pain care strategies as one bundle in an intervention study. this research study addressed the knowledge gap and sought to test an important substantive clinical question: determining the effect of a -component bundle of pain care strategies, bite pain therapytm (bundling interventions to enhance pain care quality), on patients’ perception of pain care quality. the purpose of this nurse-driven, interprofes- sional, patient-centered project was to implement bite pain therapytm, a standardized bundle of conceptually aligned evidence-based pain care management strategies, to improve patients’ perception of pain care quality by actively engaging the patient as a partner rather than a recipient of treatment. active engagement of the patient as a healthcare team partner using bite pain therapytm was facilitated by bundle components that ( ) defined and communicated pain care expectations and ( ) determined appropriate pain care interventions. this study was particularly important because if the hypothesis that the bite pain therapytm intervention improves medical surgical patients’ perceptions of pain care quality was supported, nurses could add a bundle of evidence-based, pragmatic, and readily accessible pain care strategies to their armamentarium in the battle against pain in hospitalized patients. research questions the research questions that guided this scientific inquiry were ( ) to what extent does implementation of a unit- based standardized bundle of evidence-based pain care components (bite pain therapytm) improve medical surgi- cal patients’ perception of pain care quality over time? and ( ) is there a relationship between bite pain therapytm inter- vention adherence, patients’ perception of pain care quality, and pain experience outcomes? methods design a quasi-experimental interrupted time series design was used to evaluate the effect of the bite pain therapytm inter- vention on patients’ perceptions of pain care quality and - hour pain experience outcomes. unit-level pain quality data were collected monthly for months before implementa- tion and months after. unit intervention adherence data were collected weekly and averaged monthly. the study was performed according to good clinical practice principles and was approved by the participating facility’s institutional review board (irb). setting the study was conducted on medical surgical units in a -bed quaternary acute care academic facility in metropolitan new orleans, la, with magnet recognition® (american nurses credentialing center, silver spring, md). patients on each of the adult units are primarily specialty populations: gastrointestinal disorders ( beds), orthope- dics ( beds), and transplant ( beds). however, all units are similar in that > % of the patients are admitted for major surgical procedures. sample and sampling plan a convenience sample of all patients meeting inclusion criteria on the participating medical surgical units was recruited to participate in the study. the sampling plan involved recruiting patients on a predetermined day of each month during the -month preintervention and -month postintervention periods. all patients on each unit were screened by study staff for eligibility using the electronic ochsner journal rice, kl figure . bite pain therapy tm (bundling interventions to enhance pain care quality) objectives and components. health record and daily unit census reports. all eligible patients were invited to voluntarily consent to participate if the inclusion criteria were met: � years old, on that unit at least hours, complaint of pain in the last hours with an active order for pharmacologic analgesic, and able to speak and read english. patients were excluded if they had a his- tory of cognitive dysfunction, an acute mental status change, or a medical condition that precluded their ability to partici- pate in a -minute interview for collecting data. intervention the bite pain therapytm intervention was implemented on november , as a new best practice for the man- agement of acute and chronic pain for all patients hospi- talized on the participating units. bite pain therapytm, a -component bundled intervention, was developed by the investigators based on the synthesis of evidence previously described in the literature review. the bundle components (figure ) included ( ) patient education regarding pain and pain management (pain brochure and individualized instruc- tion); ( ) pain and coping with pain assessments using the - numeric rating scale with faces; ( ) structured pain rounds every hour during the day and every hours at night if the patient was awake; ( ) communication of the pain man- agement plan (comfort goal and time next analgesic dose available) written on the patient’s wall-mounted whiteboard; ( ) pharmacologic management; and ( ) the offer of menu- driven adjunctive nonpharmacologic therapies. although these bundle components are congruent with the standard of care, the development of a coping with pain assessment instrument (figure ) and a menu for patients to select nonpharmacologic therapy options were innova- tive additions to the intervention. patients were provided a menu, take the bite out of pain, on admission (figure ). the expectation was that all patients with a complaint of pain would be offered the entire -component bite pain therapytm bundled intervention each shift as the new stan- dard of care. each participating unit was supplied with two supply carts called comfort carts that included nonphar- macologic therapies (ie, essential oils, distraction materials, massagers). comfort carts were audited, and the supplies were replaced each week or more often if nurses reported a need. all participating unit-based provider stakeholders (nurses, advanced practice nurses, physicians, physician assistants, clinical pharmacists, social workers, physical and occupa- tional therapists, pastoral care providers) received educa- tion regarding the bite pain therapytm intervention, includ- ing information about knowledge and attitudes about pain management and implementation of the pain care bundle. nurses’ competencies in completing all bundle components were validated using role modeling and case study vignette simulations. the institution’s pain task force accepted figure . ability to cope with pain rating scale. volume , number , summer bite pain therapytm figure . nonpharmacologic therapy menu. responsibility for facilitating physician and advanced prac- tice clinician (nurse practitioners, physician assistants) pain management education involving the bite pain therapytm bundle. ongoing education was facilitated using online intranet-based educational modules, skills fairs, and unit- based huddles. measurement and instruments pain care quality (paincq©). patients’ perception of pain care quality, the primary endpoint, was measured using dif- ferent surveys: pain care quality-interdisciplinary (paincq- i©) and pain care quality-nursing (paincq-n©) surveys. these surveys collect information about the patient’s pain care experience in the context of a specific encounter and provider interactions during hospitalization. the surveys focus on a comprehensive assessment of pain manage- ment that impacts the patient, family, and friends, including nonpharmacologic therapies and fear of addiction. patients’ perception of pain care quality was measured using the paincq© surveys monthly during periods: preintervention ( months) and postintervention ( months). in addition, demographic information and selected items from the brief pain inventory about participants’ pain experience during the previous hours were solicited at the same time the paincq© surveys were administered. while demographic items included self-reported type of pain (acute, chronic, or both types), the items eliciting information about patients’ pain experience during the previous hours focused on pain outcomes (average pain level, time in severe pain, frequency of pain medication administration, percent pain relief from medications, ability to cope with pain). preinter- vention participants completed the same paincq© surveys as postintervention participants with one exception. demo- graphic items in the preintervention survey did not request participants to self-identify the type of pain they were cur- rently experiencing. following informed consent, trained data collectors used pen and paper surveys to collect information via structured interview. permission to use and revise the pain care quality surveys was granted by the developer. the original -item ochsner journal rice, kl table . confirmatory factor analysis for paincq© survey data test statistic criteria for good model fit paincq-i© (n= ) paincq-n© (n= ) number of items chi-square (df) . ( ) . ( ) p value for chi-square < . . < . chi-square ratio χ /df (< ) . . comparative fit index � . . . goodness-of-fit index � . . . standardized root mean square residual � . . . root mean square error of approximation � . . . note: missing data replaced with subscale mean to facilitate complete dataset for confirmatory factor analysis. df, degrees of freedom; paincq-i©, pain care quality-interdisciplinary; paincq-n©, pain care quality-nursing. survey includes pain care quality items specific to interdis- ciplinary care ( items) and nursing pain care ( items). , altogether, these items specifically measure patients’ per- ception of pain care quality, and they make up the paincq- i© and the paincq-n© surveys. the items included on the paincq-i© survey are categorized under subscales: part- nership with the health care team ( items) and comprehen- sive interdisciplinary pain care ( items). the items on the paincq-n© survey are categorized under subscales: being treated right ( items), comprehensive nursing pain care ( items), and efficacy of pain management ( items). both the paincq-i© and paincq-n© surveys use a -point lik- ert rating scale ( =strongly disagree to =strongly agree) to elicit information about pain care quality related to interdis- ciplinary care since admission to the hospital (ie, paincq- i©) and nursing care during the previous -hour shift (ie, paincq-n©). higher scores indicate better pain care quality. because the bite pain intervention included an option of nonpharmacologic therapies thought to improve patients’ ability to cope with pain, , , , it was important to assess the patients’ baseline coping ability and the impact of nurs- ing care as confounding variables. therefore, additional questions were developed in collaboration with the instru- ment developer. one of the items previously mentioned in the -item section that assessed the patient’s pain experience during the last hours—please rate how effectively you are coping with pain on the average during past hours—uses a numeric rating scale with faces ( =coping all the time to =never coping). the second question—the nurse did a good job helping me to cope with my pain—was added to the paincq-n© being treated right subscale items, increasing this subscale to items. information from survey items ( demographic, pain experience, paincq©, plus new coping question) were collected from participants. the items making up the original paincq-i© and paincq-n© surveys have psychometric estimates to sup- port reliability and validity in measuring patients’ percep- tions about pain care quality. all subscales have previously reported satisfactory internal consistency reliability and con- struct validity via confirmatory factor analysis (cfa). inter- nal consistency reliability for each subscale of the paincq- i© ( items) and revised paincq-n© ( items) surveys used in this study were satisfactory. cronbach’s α for the individ- ual subscales was . (partnership with the health care team), . (comprehensive interdisciplinary pain care), . (being treated right), . (comprehensive nursing pain care), and . (efficacy of pain management). cfa supported the validity of the construct in this study, and the data fit the model for both the paincq-i© and revised paincq-n© surveys (table ). bite pain therapytm intervention fidelity. measuring intervention adherence is critical to determining whether per- ceptions of pain care quality are attributable to the interven- tion or to some other confounding variable. the researchers developed an audit tool to measure patients’ perception of nurses’ adherence with each of the bundle compo- nents using a dichotomous (yes/no) response. patients were selected for auditing based on the same eligibility crite- ria used in conducting the paincq© surveys. using the same audit instrument, strategies were used to assess the impact of the intervention on patients’ perception of pain care quality and pain outcomes. first, unit-based adherence of the intervention was captured weekly but at a different time than pain care quality and pain outcome data collec- tion. second, individual participant intervention adherence was collected monthly at the same time as pain care quality and pain outcome data collection, providing paired data for some participants in the postintervention group. unit-based intervention adherence audits. unit-based audits were conducted by research assistants each week via patient interview and observation. consented patients were interviewed regarding their recollection that the bundle options were offered during the prior hours and by obser- vation of written communication of the pain management plan on whiteboards in the hospital room. bundle adherence audits were scored to determine the percentage of adher- ence for each bundle component and for all bundle compo- nents. this information was communicated back to nurses on each participating unit weekly to foster improved adher- ence with all bundle components over time. in addition, nurses were encouraged to anonymously complete a pocket card weekly to communicate processes that worked well or presented obstacles to bundle adherence (figure ). individual participant intervention adherence audits. to investigate the effects of the bundle components on improv- ing the perception of pain care quality, defining and capturing participants’ exposure to the intervention were necessary. in june , the protocol was amended and approved by volume , number , summer bite pain therapytm figure . nurses’ pocket card to assess what was working and not working. the irb. in addition to the monthly intervention adherence audits, this amendment provided a mechanism to capture individual participant intervention adherence data on some of the postintervention group at the same time as pain care quality and pain outcome data were collected. participant data from the entire preintervention (n= ) period and from individual audits (n= ) from some in the postintervention period were categorized into groups according to their exposure to the intervention. three groups were defined: group preintervention (no bundle), group postintervention (offered - bundle components), and group postintervention (offered all bundle components). the team’s rationale was ( ) no one in group was exposed to the bundle; of the components were not available (abil- ity to cope with pain assessment and nonpharmacologic menu); ( ) participants in group who reported receiving - components were exposed to at least component (phar- macologic analgesia was an inclusion criterion) during their hospitalization even if they were not consciously aware; and ( ) the number of participants in group who reported receiving all bundle components at the time paincq© sur- vey data were collected supports intervention adherence. therefore, the primary analysis of the effect of the bun- dled intervention focused on comparing the pain care quality scores and pain outcomes of participant groups that had paired data to support whether or not exposure to the inter- vention occurred. data analyses exploratory data analysis was conducted to examine the distributions of each study variable, primary and secondary endpoints by means ± standard deviations, and frequen- cies and percentages. medians and interquartile ranges were reported when continuous data were not normally dis- tributed. all analyses were completed using sas/stat soft- ware, v. . of the sas system for windows. all tests were performed with significance level α= . . pain experience outcome data were dichotomized into groups of responses for average pain (low= - rating vs high= - rating), time in severe pain ( %- % vs %- %), amount of relief from pharmacologic analgesia ( %- % vs %- %), and ability to cope with pain ( - rating vs - rating). little variability was seen among patients’ responses, and dichotomizing allowed us to see the separa- tion between participant responses more clearly. in addition, the dichotomized groups were aligned with existing clini- cal practice goals for quality improvement of pain care out- comes at this organization. data were analyzed using approaches: ( ) testing the entire participant sample’s demographics, pain care quality and pain experience outcome data, and unit-based monthly mean intervention adherence measures for the -component bundle and ( ) testing the subsample of participants with individual-level intervention adherence data paired with pain care quality and pain experience outcome data. entire participant sample analysis (n= ) demographic characteristics for the entire sample are reported as means and standard deviations for continuous measures and as frequencies and percentages for categor- ical measures. chi-square tests were used for comparisons of the dichotomized -hour pain experience outcomes regarding time in severe pain, relief from pain, and ability to cope between participants reporting low vs high average pain. additionally, all dichotomized outcomes were com- pared via chi-square tests between groups defined by the dichotomized type of reported pain. a multinomial ordinal regression model incorporating an interrupted time series design was used to test for changes from preintervention to postintervention in means and time trends in paincq© scores across the sample and within each unit. differences in changes from preintervention to postintervention in means and time trends in paincq© scores between units were also tested. subsample analysis (n= ) a subsample analysis was completed using the prein- tervention participant data (n= ) and data collected on postintervention participants (n= ) with individual paired data for intervention adherence for the bundle compo- nents, paincq© and pain experience outcomes. as previ- ously described, participants were categorized into groups (group preintervention, group postintervention [receiv- ing - bundle components], and group postinterven- tion [receiving all bundle components]) for comparison. sample size was determined from a power analysis of ochsner journal rice, kl paincq© scores. to achieve % power to detect differ- ences in paincq© scores between the adherence groups, a total sample size of n= is sufficient. the power and sample size calculations are based on the expectation of observed means equal to . , . , and . for the preinter- vention, postintervention with partial intervention adherence, and postintervention with full adherence groups, respec- tively. a standard deviation of . was assumed for all partic- ipant groups, and the calculations were adjusted to account for multiple comparisons. because of the non-normality of the actual observed paincq© scores in this study, the sub- sequently described group comparisons utilized nonpara- metric methods. although less powerful than analogous parametric tests, we concluded that the amassed sample size of n= was sufficient to maintain adequate power. using one-way anova for continuous measures and chi- square tests for categorical measures, demographics and type of pain were compared. to test for group differences in the study outcomes, kruskal-wallis tests were used for distributions of paincq© scores and subscale scores, chi- square tests were used for associations with -hour pain care experience responses, and odds ratios (ors) from a multinomial ordinal regression model were used for odds of higher paincq© scores. finally, intervention adherence data for the postintervention groups (n= ) were tested using chi-square tests for associations between exposure to individual bundle components and -hour pain experience outcomes. results participant characteristics a total of , patients met eligibility criteria over the course of the -month study period, with ( . %) con- senting (figure ). ten of participants withdrew without completing the survey because of a change in their medical condition (ie, pain, fatigue, nausea). data from partic- ipants were included in analyses. participants’ self-reported demographic characteristics for the sample (n= ) included a mean age of . years (sd= . ) and . % male. significantly more participants were white ( . %), not hispanic or latino ( . %), married/partnered ( . %), and completed at least some college ( . %) (table ). of the participants, ( . %) completed the paincq© surveys during the preintervention study period, july through october . as previously stated, the self-reported pain types (acute, chronic, or both) were only collected from postintervention participants, representing / ( . %) of the sample, with the majority ( / [ . %]) reporting acute pain compared to / ( . %) reporting chronic pain and / ( . %) with both acute and chronic pain (table ). a group comparison of all participants (n= ) based on reported -hour pain experience was completed. when - hour pain experience outcomes were dichotomized by low vs high average pain ratings, participants who reported a lower average daily pain score reported significantly less time in severe pain, greater pain relief from pharmacologic analgesia, and higher ability to cope with pain (table ). however, when -hour pain experience data were analyzed from the postintervention participants from whom pain type was collected (table ), differing patterns of associa- tions were observed between participants reporting acute figure . participant flow chart. pain compared to participants who reported chronic or acute and chronic pain. participants reporting acute pain alone had more reports of low average pain scores ( . %), less time in severe pain ( . %), and more relief from pharmacologic analgesia ( . %) than those with chronic or both acute and chronic pain. no significant differences in ability to cope with pain based on type of pain were found. pain care quality and unit-based intervention adherence incorporating the interrupted time series design, an ordi- nal regression model was used to answer the research question, does implementation of a unit-based stan- dardized bundle of evidence-based pain care interven- tions (bite pain therapytm) improve medical surgical patients’ perception of pain care quality over time? fig- ure illustrates that no significant changes occurred in trends of paincq-i© (f[ , ]< . ; p= . ) or paincq- n© (f[ , ]= . ; p= . ) scores over time or in mean paincq-i© (f[ , ]= . ; p= . ) or paincq-n© (f[ , ]= . ; p= . ) scores following implementation of the intervention. three-group participant findings because the bite pain therapytm unit-based interven- tion adherence for the -component bundle failed to meet the monthly average goal of %, we were unable to test the hypotheses that bundle adherence had an effect on patients’ perception of pain care quality or pain experience outcomes. faced with a mean unit-based adherence for the -component bundle that did not exceed zero percent during the first months of the postintervention period, the protocol volume , number , summer bite pain therapytm table . participant characteristics characteristic all participants n= mean age, years ± sd . ± . sex female ( . ) male ( . ) race black or african american ( . ) white ( . ) other ( . ) ethnic background hispanic, latino, or spanish origin ( . ) not hispanic or latino ( . ) marital status single ( . ) separated or divorced ( . ) widow or widower ( . ) married or partnered ( . ) education technical school graduate and below ( . ) some college and above ( . ) paina acute ( . ) chronic ( . ) acute and chronic ( . ) apain type was collected only on postintervention participants (n= ). note: data are reported as n (%) unless otherwise indicated. amendment afforded the opportunity to collect paired pain care quality, pain experience outcome, and bundle compo- nent adherence data beginning in the eighth month of the postintervention period. intervention adherence data were collected on / ( . %) postintervention participants who completed paincq© surveys. during the -month intervention period, participants (n= ) reported receiving a mean of . bite pain therapytm bundle components (median . ). however, only / ( . %) reported receiv- ing all bundle components (figure ). audit data of each bundle component from the participants revealed that . % reported receiving pain education, . % received both pain and coping with pain assessments, . % experi- enced structured pain rounds, . % had whiteboard com- munication of their comfort goal and next analgesic dose available, . % were aware they were receiving phar- macologic analgesia, and . % were offered the com- plementary therapy menu. the bundle components that negatively impacted intervention fidelity were failure to update the whiteboard communication of the pain manage- ment plan and offering the complementary therapy menu. table describes the demographic characteristics of the participant groups using the sample of : group prein- tervention (no bundle), group postintervention (offered - bundle components), and group postintervention (offered all bundle components). no differences (p> . ) were ta b le . -h o u r p ai n ex p er ie n ce o u tc o m e c o m p ar is o n s d ic h o to m iz ed b y lo w vs h ig h a ve ra g e p ai n r at in g s (n = ) o u tc o m e lo w a ve ra g e p ai n ( - ra ti n g ) h ig h a ve ra g e p ai n ( - ra ti n g ) m is si n g /u n kn o w n c h i- sq u ar e (d f) a p v al u e ti m e in se ve re p ai n . ( ) < . % - % ( . ) ( . ) ( . ) % - % ( . ) ( . ) ( . ) m is si n g /u n kn o w n ( . ) ( . ) ( . ) a m o u n t o fr el ie ff ro m p h ar m ac o lo g ic an al g es ia . ( ) < . % - % ( . ) ( . ) ( . ) % - % ( . ) ( . ) ( . ) m is si n g /u n kn o w n ( . ) ( . ) ( . ) a ve ra g e ab ili ty to co p e w it h p ai n . ( ) . lo w ( - ra ti n g ) ( . ) ( . ) ( . ) h ig h ( - ra ti n g ) ( . ) ( . ) ( . ) m is si n g /u n kn o w n ( . ) ( . ) ( . ) a te st st a ti st ic s a n d p va lu e s fr o m c h i- sq u a re te st s fo r a ss o c ia ti o n . n o te s: t h e m is si n g /u n kn o w n c o lu m n la b e lr e fe rs to u n kn o w n re sp o n se s fo r ra ti n g o f a ve ra g e p a in ; th e m is si n g /u n kn o w n ro w la b e ls re fe r to u n kn o w n re sp o n se s fo r ra ti n g s o f ti m e in se ve re p a in , a m o u n t o f p a in re lie f fr o m p h a rm a c o lo g ic a n a lg e si a , o r a ve ra g e a b ili ty to c o p e w it h p a in . d a ta a re re p o rt e d a s n (% ). b o ld d e n o te s st a ti st ic a ls ig n ifi c a n c e . d f, d e g re e s o f fr e e d o m . ochsner journal rice, kl table . -hour pain experience outcome comparison by type of pain (n= ) outcome acute pain chronic pain acute and chronic pain chi-square (df)a p value average pain . ( ) . low ( - rating) ( . ) ( . ) ( . ) high ( - rating) ( . ) ( . ) ( . ) missing/unknown ( . ) ( . ) ( . ) time in severe pain . ( ) < . %- % ( . ) ( . ) ( . ) %- % ( . ) ( . ) ( . ) missing/unknown ( . ) ( . ) ( . ) amount of relief from pharmacologic analgesia . ( ) . %- % ( . ) ( . ) ( . ) %- % ( . ) ( . ) ( . ) missing/unknown ( . ) ( . ) ( . ) average ability to cope with pain . ( ) . low ( - rating) ( . ) ( . ) ( . ) high ( - rating) ( . ) ( . ) ( . ) missing/unknown ( . ) ( . ) ( . ) atest statistics and p values from chi-square tests for association. notes: data are reported as n (%). bold denotes statistical significance. df, degrees of freedom. seen in age, sex, race, ethnicity, marital status, or highest level of education among the groups. in addition, we found no difference in the distribution of pain types between the postintervention groups. this -group analysis of the preintervention participants and postintervention participant groups identified signifi- cant (p< . ) differences between groups for total paincq- i© and paincq-n© scores, as well as all subscale scores (table ). participants in group postintervention who were offered all bundle components had a higher percep- tion of pain care quality compared to either the group preintervention participants or the group postintervention participants. regression analysis of ordered multinomial paincq-i© and paincq-n© scores by group suggests that the odds of higher pain care quality scores were not statistically different between group and group (table ). however, group had significantly higher odds of higher scores for both the paincq-i© (or > . ) and paincq-n© (or > . ) surveys vs both group and group (table ). we found no significant differences (p> . ) between group preintervention participants and participants in the postintervention participant groups for -hour pain out- comes (table ). although the majority of participants in all groups reported a high average daily pain score (score > ), the majority also reported less time in severe pain (< % of the time) and higher abilities to cope with pain (score > ). in contrast, reports of the percentage of pain relief from phar- macologic analgesia for the groups were variable. even though participants who received all bundle com- ponents did not demonstrate a significant impact on -hour pain experience outcomes, a secondary analysis of each bundle component did identify the following findings. when each bundle component was tested for an association with each of the -hour pain experience outcomes, one bun- dle component significantly improved two of the four - hour pain outcomes (table ). participants who received the structured pain rounds bundle component vs those who did not reported significantly less time in severe pain and a higher ability to cope with pain. discussion to our knowledge, this study is the first to test the effect of a patient-centered bundled pain management interven- tion on medical surgical patients’ perception of pain care quality and -hour pain experience outcomes. yet because unit-based intervention fidelity failed to meet the goal of % adherence with the bite pain therapytm -component bundle, we were unable to determine an effect of the unit- based intervention on patients’ perception of pain care qual- ity and -hour pain experience outcomes comparing the preintervention to postintervention periods as initially pro- posed. however, the sample size was sufficient to complete a -group analysis that allowed us to compare participants’ perception of pain care quality and -hour pain experience outcomes with confirmed intervention adherence in a sub- sample of . % ( / ) of participants. this subsample was representative of the patient populations cared for on all participating units for sex, age, and ethnicity, with no significant differences in the distribution of participant char- acteristics among the groups. our subsample findings support that participants receiv- ing the -component bundle comprising the bite pain therapytm intervention reported significantly higher levels of pain care quality delivered by both nurses and interdis- ciplinary care teams during hospitalization. in contrast, no volume , number , summer bite pain therapytm figure . run chart showing mean monthly unit-based intervention adherence with the -component bundle and paincq© scores for interdisciplinary and nursing surveys during the -month study period. paincq-i, pain care quality-interdisciplinary; paincq-n, pain care quality-nursing. differences in perception of pain care quality were detected between participants in the preintervention group and partic- ipants in the postintervention group that did not receive all bundle components. therefore, this study provides support that using all components comprising bite pain therapytm significantly improved the perception of pain care quality in the medical surgical patients who participated in this study. no relationships were identified between the preinterven- tion and postintervention groups for average pain score, time in severe pain, amount of pain relief from pharmacologic analgesia, or average ability to cope with pain. overall, the majority of participants in all groups reported an average -hour pain rating in the moderate to severe range ( - rating), yet reports of less percentage of time in severe pain ( %- %) vs more time ( %- %) in severe pain were figure . bite pain therapy tm (bundling interventions to enhance pain care quality) bundle adherence for all components (n= ). ochsner journal rice, kl ta b le . p ar ti ci p an t c h ar ac te ri st ic s an d b iv ar ia te c o m p ar is o n s fo r p re in te rv en ti o n an d po st in te rv en ti o n g ro u p s (n = ) g ro u p g ro u p g ro u p p re in te rv en ti o n po st in te rv en ti o n ( - b u n d le po st in te rv en ti o n ( b u n d le te st c h ar ac te ri st ic (n o b u n d le )n = co m p o n en ts )n = co m p o n en ts )n = st at is ti ca p v al u e m ea n ag e, ye ar s ± sd . ± . . ± . . ± . f( , ) = . . se x χ ( )= . . fe m al e ( . ) ( . ) ( . ) m al e ( . ) ( . ) ( . ) r ac e χ ( )= . . b la ck o ra fr ic an a m er ic an ( . ) ( . ) ( . ) w h it e ( . ) ( . ) ( . ) o th er ( . ) ( . ) ( . ) et h n ic b ac kg ro u n d χ ( )= . . h is p an ic ,l at in o, o rs p an is h o ri g in ( . ) ( . ) ( . ) n o t h is p an ic o rl at in o ( . ) ( . ) ( . ) m is si n g /u n kn o w n ( . ) ( . ) ( . ) m ar it al st at u s χ ( )= . . si n g le ( . ) ( . ) ( . ) se p ar at ed o rd iv o rc ed ( . ) ( . ) ( . ) w id o w o rw id o w er ( . ) ( . ) ( . ) m ar ri ed o rp ar tn er ed ( . ) ( . ) ( . ) ed u ca ti o n χ ( )= . . te ch n ic al sc h o o lg ra d u at e an d b el o w ( . ) ( . ) ( . ) so m e co lle g e an d ab o ve ( . ) ( . ) ( . ) pa in χ ( )= . . a cu te n o t co lle ct ed ( . ) ( . ) c h ro n ic n o t co lle ct ed ( . ) ( . ) a cu te an d ch ro n ic n o t co lle ct ed ( . ) ( . ) a te st st a ti st ic s a n d p va lu e s fr o m o n e -w a y a n o v a f -t e st fo r a g e c o m p a ri so n a n d c h i- sq u a re te st s fo r a ss o c ia ti o n fo r a ll c a te g o ri c a lv a ri a b le c o m p a ri so n s. n o te : d a ta a re re p o rt e d a s n (% ) u n le ss o th e rw is e in d ic a te d . volume , number , summer bite pain therapytm ta b le . p re in te rv en ti o n an d po st in te rv en ti o n g ro u p c o m p ar is o n s o fp ai n c q © an d su b sc al e sc o re s (n = ) g ro u p p re in te rv en ti o n g ro u p po st in te rv en ti o n g ro u p po st in te rv en ti o n c h i- sq u ar e su rv ey /s u b sc al e (n o b u n d le )n = ( - b u n d le co m p o n en ts )n = ( b u n d le co m p o n en ts )n = (d f) a p v al u e pa in c q -i n te rd is ci p lin ar y© su rv ey . ( . - . ) . ( . - . ) . ( . - . ) . ( ) < . su b sc al e – pa rt n er sh ip w it h th e h ea lt h c ar e te am . ( . - . ) . ( . - . ) . ( . - . ) . ( ) < . su b sc al e – c o m p re h en si ve in te rd is ci p lin ar y pa in c ar e . ( . - . ) . ( . - . ) . ( . - . ) . ( ) < . pa in c q -n u rs in g © su rv ey . ( . - . ) . ( . - . ) . ( . - . ) . ( ) < . su b sc al e – b ei n g tr ea te d r ig h t . ( . - . ) . ( . - . ) . ( . - . ) . ( ) < . su b sc al e – c o m p re h en si ve n u rs in g pa in c ar e . ( . - . ) . ( . - . ) . ( . - . ) . ( ) < . su b sc al e – effi ca cy o fp ai n m an ag em en t . ( . - . ) . ( . - . ) . ( . - . ) . ( ) . a te st st a ti st ic s a n d p va lu e s fr o m c h i- sq u a re te st s fo r a ss o c ia ti o n . n o te s: d a ta a re re p o rt e d a s m e d ia n ( th p e rc e n ti le - th p e rc e n ti le ). b o ld d e n o te s st a ti st ic a ls ig n ifi c a n c e . d f, d e g re e s o f fr e e d o m ; p a in c q © , p a in c a re q u a lit y. table . regression analysis of ordered multinomial paincq© scores by preintervention and postintervention group (n= ) survey/comparison groups odds ratioa ( % ci) paincq-interdisciplinary© survey group postinterventionb vs group preinterventionc . ( . - . ) group postinterventiond vs group preinterventionc . ( . - . ) group postinterventiond vs group postinterventionb . ( . - . ) paincq-nursing© survey group postinterventionb vs group preinterventionc . ( . - . ) group postinterventiond vs group preinterventionc . ( . - . ) group postinterventiond vs group postinterventionb . ( . - . ) aodds ratios represent odds of a higher score on the paincq© scale. bgroup postintervention ( - bundle components). cgroup preintervention (no bundle). dgroup postintervention ( bundle components). ci, confidence interval; paincq©, pain care quality. almost equally split. the incongruence between the major- ity of participants’ reports of moderate to severe pain and less percentage of time in severe pain may be explained by the dichotomization of these measures. even though others have reported the validity of categorizing numerical pain rat- ings into groups (mild, moderate, and severe pain), , we chose to categorize pain ratings into groups based on our institution’s quality improvement goals related to pain. the accuracy of participant recall could also have biased pain- related outcome measurement and contributed to the incon- gruence between average -hour pain ratings and percent- age of time in severe pain. however, other studies support the validity of patient recall related to reporting average pain scores for both -hour , and -week time periods. in addition, we found no differences between groups in participants’ reports of the amount of relief from pharma- cologic analgesia. fifty-seven percent of the preinterven- tion group reported � % relief from pharmacologic anal- gesia compared to an almost equal split between < % and � % in the postintervention groups. while the latter finding was not significant, organization-wide strategies to promote adjunctive nonpharmacologic pain management to reduce opioid use were launched at the same time that this research study began. therefore, pharmacologic analgesia alone would have been the mainstay of pain management during the preintervention period and may have contributed to reports of � % relief from analgesics. nevertheless, we did not measure opioid use, so we are unable to determine if the differences in opioid administration differed between the preintervention or postintervention groups and contributed to reports of increased pain relief from pharmacologic anal- gesia in the preintervention group. the bundled intervention did not have a significant effect on participants’ ability to cope with pain. although the major- ochsner journal rice, kl ta b le . p re in te rv en ti o n an d po st in te rv en ti o n g ro u p c o m p ar is o n o fd is tr ib u ti o n s o fd ic h o to m iz ed -h o u r p ai n ex p er ie n ce o u tc o m es (n = ) g ro u p p re in te rv en ti o n g ro u p po st in te rv en ti o n g ro u p po st in te rv en ti o n c h i- sq u ar e o u tc o m e (n o b u n d le )n = ( - b u n d le co m p o n en ts )n = ( b u n d le co m p o n en ts )n = (d f) a p v al u e a ve ra g e p ai n . ( ) . lo w ( - ra ti n g ) ( . ) ( . ) ( . ) h ig h ( - ra ti n g ) ( . ) ( . ) ( . ) m is si n g /u n kn o w n ( . ) ( . ) ( . ) ti m e in se ve re p ai n . ( ) . % - % ( . ) ( . ) ( . ) % - % ( . ) ( . ) ( . ) m is si n g /u n kn o w n ( . ) ( . ) ( . ) a m o u n t o fr el ie ff ro m p h ar m ac o lo g ic an al g es ia . ( ) . % - % ( . ) ( . ) ( . ) % - % ( . ) ( . ) ( . ) m is si n g /u n kn o w n ( . ) ( . ) ( . ) a ve ra g e ab ili ty to co p e w it h p ai n . ( ) . lo w ( - ra ti n g ) ( . ) ( . ) ( . ) h ig h ( - ra ti n g ) ( . ) ( . ) ( . ) m is si n g /u n kn o w n ( . ) ( . ) ( . ) a te st st a ti st ic s a n d p va lu e s fr o m c h i- sq u a re te st s fo r a ss o c ia ti o n . n o te : d a ta a re re p o rt e d a s n (% ). d f, d e g re e s o f fr e e d o m . volume , number , summer bite pain therapytm table . comparison of -hour pain experience outcomes by exposure to each bundle component component outcome yes no chi-square (df)a p value component . pain education average pain . ( ) . low ( - rating) . . high ( - rating) . . time in severe pain . ( ) . %- % . . %- % . . amount of relief from pharmacologic analgesia . ( ) . %- % . . %- % . . average ability to cope with pain . ( ) . low ( - rating) . . high ( - rating) . . component . pain and coping average pain . ( ) . with pain assessment low ( - rating) . . high ( - rating) . . time in severe pain . ( ) . %- % . . %- % . . amount of relief from pharmacologic analgesia . ( ) . %- % . . %- % . . average ability to cope with pain . ( ) . low ( - rating) . . high ( - rating) . . component . structured pain average pain . ( ) . rounds low ( - rating) . . high ( - rating) . . time in severe pain . ( ) . %- % . . %- % . . amount of relief from pharmacologic analgesia . ( ) . %- % . . %- % . . average ability to cope with pain . ( ) . low ( - rating) . . high ( - rating) . . component . whiteboard average pain . ( ) . communication low ( - rating) . . high ( - rating) . . time in severe pain . ( ) . %- % . . %- % . . amount of relief from pharmacologic analgesia . ( ) . %- % . . %- % . . ochsner journal rice, kl table . continued component outcome yes no chi-square (df)a p value average ability to cope with pain . ( ) . low ( - rating) . . high ( - rating) . . component . pharmacologic average pain . ( ) . analgesia low ( - rating) . . high ( - rating) . . time in severe pain . ( ) . %- % . . %- % . . amount of relief from pharmacologic analgesia . ( ) . %- % . . %- % . . average ability to cope with pain . ( ) . low ( - rating) . . high ( - rating) . . component . nonpharmacologic average pain . ( ) . therapy menu low ( - rating) . . high ( - rating) . . time in severe pain . ( ) . %- % . . %- % . . amount of relief from pharmacologic analgesia . ( ) . %- % . . %- % . . average ability to cope with pain . ( ) . low ( - rating) . . high ( - rating) . . atest statistics and p values from chi-square tests for association. notes: data are reported as percentages. bold denotes statistical significance. ity of participants in all groups reported higher ability to cope with pain ( - rating) vs low ability ( - rating), both postintervention groups had slightly more reports of higher ability to cope compared to the preintervention group. while the nonpharmacologic menu options were included as a bundle component because of their potential impact on coping with pain, many factors contribute to an indi- vidual’s ability to cope with pain. factors such as spiritual beliefs and prior experience with using distraction in deal- ing with pain may have impacted responses to this question by participants in all groups. however, information regard- ing prior knowledge and/or utilization of nonpharmacologic adjunctive therapies was not measured in the preinterven- tion or postintervention groups. hence, we were unable to determine whether our study provided participants with a first encounter with nonpharmacologic pain management strategies. although the bite pain therapytm -component bun- dle failed to impact any of the -hour pain experience outcomes, one individual bundle component did have an impact. interestingly, the only bundle component associated with significantly less time in severe pain and higher abil- ity to cope with pain was structured pain rounds. the fre- quent nurse/patient interaction facilitated by structured pain rounds may result in better pain management. mitchell et al synthesized the evidence of studies examining the effect of hourly rounding on patient satisfaction with nurs- ing care. they concluded that despite little consistency in how hourly rounding is measured, moderate-strength evi- dence indicates that hourly rounding programs improved patients’ perception of nursing responsiveness to requests for assistance. in addition, results from an hourly round- ing best-practice implementation project on a -bed med- ical surgical unit showed a % increase in nurse commu- nication and an % increase in pain management scores when the hourly rounding compliance rate increased to % from zero at baseline. hence, frequent rounding about pain that promotes nursing responsiveness to patient needs may have contributed to increasing the perception of less time in severe pain and a higher ability to cope with pain. volume , number , summer bite pain therapytm however, structured pain rounds did not have a relation- ship with participants’ reports of less time in severe pain or lower average -hour pain scores. despite reports by jensen et al regarding the validity of -hour pain score recall, challenges in accurately capturing patients’ percep- tions of postoperative pain using the faces scale exist. anecdotally, many patients struggle with using the - numeric scale to communicate their level of pain, partic- ularly when they are aware that a higher score might get them a stronger medication. similarly, nurses may discount patients’ reported pain scores that can lead to undertreat- ment or overtreatment of pain. others have suggested that using a numeric rating scale that integrates a functional assessment of pain-related impact on activities may be a more appropriate measure of patients’ self-reported pain. clearly, opportunities exist in identifying effective strategies to comprehensively target pain management and in adopt- ing reliable and valid multidimensional outcome measures to drive quality improvement. even though the findings from this study support that the bite pain therapytm bundled intervention improved partici- pants’ perception of pain care quality, the intervention adher- ence did not support sustainability of the unit-based project. project sustainability requires continued use of intervention components with sufficient intensity to sustain achievement of program goals and outcomes. , therefore, identifying pragmatic methods to both measure adherence and cap- ture facilitators and barriers to intervention fidelity is crit- ical. in this study, intervention adherence was measured using patient recall for a -hour period rather than real- time methods to capture bundle component adherence and patient-related responses to individual bundle compo- nents. although multiple strategies were used to improve unit-based intervention adherence—weekly communication of adherence rates, communication huddles, and solicit- ing information about adherence facilitators and obstacles— several factors during the -month intervention period con- tributed to failed intervention fidelity: changes in unit nurs- ing leadership, high nurse turnover, and nurses’ perception of increased burden associated with delivering nonpharma- cologic menu options. the findings of a qualitative study describing nurse leaders’ perceptions of facilitators and obstacles to unit-based pain improvement projects are sim- ilar to what we uncovered. tavernier and colleagues concluded that sustainable improvement related to pain management projects required overcoming the pervasive barriers of dynamic organizational change and lack of staff involvement. limitations major limitations of the study are the failure of interven- tion fidelity, a sample from surgical units from one facility, and a sampling plan that limited recruitment to one day each month to capture the primary endpoint of a unit-based intervention study. in addition, data were not collected on the specific nonpharmacologic menu options selected and whether the participant perceived a benefit. implications the bite pain therapytm intervention is pragmatic and can be easily tailored to include nonpharmacologic therapies that are low cost, easily accessible, and acceptable to a vari- ety of culturally diverse populations in different acute care settings. since the inception of our project, the american pain society (aps) published guidelines for the management of postoperative patients that includes recommendations for behavioral/cognitive therapies such as guided imagery and music therapy as adjuncts to multimodal pharmaco- logic pain management. in addition, the joint commission revised pain assessment and management standards effec- tive january , , to include involving patients in devel- oping pain management plans that include setting realistic expectations and measurable goals and providing nonphar- macologic options for inpatient pain treatment. all bun- dle components in our patient-centered, multidisciplinary bite pain therapytm intervention address the aps guide- lines and joint commission recommendations that focus on effective pain management. all of the bite pain therapytm bundle components are congruent with the standard of nursing care. offering adjunctive complementary therapy options such as aromatherapy, distraction activities (ie, puz- zles, games), and individual handheld massagers is feasi- ble on medical surgical units. in addition, opportunities to provide pet therapy and music therapy may be available by using institutional volunteer services. our findings identified that postintervention participants with acute pain alone, irrespective of whether they received all bundle components or not, reported less time in severe pain and more relief from pharmacologic analgesia. this finding is consistent with the findings of the national database of nursing quality indicators study and suggests that healthcare providers do a better job with acute pain in the inpatient setting. therefore, interprofessional educa- tion about comprehensively assessing and effectively man- aging both acute and chronic pain in the hospitalized adult is needed. finally, additional research is warranted to replicate this study at other types of inpatient facilities and in dif- ferent patient populations. studies should be designed to test care delivery processes that deliver the interven- tion without increasing nurses’ burden of work. in addi- tion, studies should explore strategies to assist healthcare providers to identify which patients will benefit from the bun- dled pain management strategies and/or individual bundle components. conclusion findings from this study support that medical surgical patients participating in this study who received all com- ponents of the bite pain therapytm intervention reported significantly higher levels of perceived pain care quality com- pared to those who did not receive all bundle components. therefore, a bundled approach to pain management may be more beneficial than unstandardized strategies. challenges exist in implementing the complete bundle to all patients in pain. acknowledgments the research methods and limited findings from this study were disseminated as a podium presentation, “bite pain therapy: bundling of interventions to enhance pain care quality,” at the american nurses association quality ochsner journal rice, kl and innovation summit in orlando, fl in 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beck sl, dunton n, berry ph, et al. dissemination and implementation of patient-centered indicators of pain care quality and outcomes. med care. feb; ( ): - . doi: . /mlr. . this article meets the accreditation council for graduate medical education and the american board of medical specialties maintenance of certification competencies for patient care, medical knowledge, and practice-based learning and improvement. volume , number , summer the effect of human interaction on guinea pig behavior in animal-assisted therapy contents lists available at sciencedirect journal of veterinary behavior ( ) e journal of veterinary behavior journal homepage: www.journalvetbehavior.com research the effect of human interaction on guinea pig behavior in animal-assisted therapy winnie gut a,b, lisa crump b, jakob zinsstag b, jan hattendorf b, karin hediger b,c,d,e,* a vetsuisse faculty, institute for food safety and hygiene, university of zurich, zurich, switzerland b swiss tropical and public health institute, department of epidemiology and public health, basel, switzerland c rehab basel, clinic for neurorehabilitation and paraplegia, basel, switzerland d institute for interdisciplinary research on the human-animal relationship switzerland, c/o swiss tropical and public health institute, basel, switzerland e faculty of psychology, department of clinical psychology and psychotherapy, university of basel, basel, switzerland a r t i c l e i n f o article history: received may received in revised form february accepted february available online february keywords: guinea pig behavior human-animal interaction animal-assisted therapy stress enrichment funding resources: this work was funded by reh rehab basel) and the forschungsfonds of univers dzx ). * address for reprint requests and correspondence: and public health institute, socinstrasse , basel ch ; fax: . e-mail address: karin.hediger@unibas.ch (k. hedig https://doi.org/ . /j.jveb. . . - /� the authors. published by elsevier a b s t r a c t guinea pigs are included in various animal-assisted interventions (aais), but no research has been published to date on behavioral changes in guinea pigs interacting with humans. the goal of this study was to evaluate the behavior in guinea pigs during animal-assisted therapy (aat) and to identify factors that influence their stress and well-being. five guinea pigs were studied during observations in a randomized controlled within-subject design with repeated measurement. all guinea pigs were tested under all the following conditions: ( ) therapy setting with retreat possibility (n ¼ ), ( ) therapy setting without retreat possibility (n ¼ ), and ( ) control setting without human interaction (n ¼ ). behavior was coded according to a specifically designed ethogram using continuous recording and focal animal sampling with the observer� xt . . the data were analyzed using generalized linear mixed models with spss�, version . . results show that the frequency but not the duration of hiding was significantly increased in the therapy setting with retreat possibility compared to the control condition. during therapy with retreat possibility, the number of comfort behavior episodes stayed constant, while the number of startling and explorative behavior and the duration of locomotion increased significantly in comparison to the control setting. during therapy without retreat possibility, the frequency of freezing was increased significantly in comparison to the therapy setting with retreat possibility and the control setting. comfort behavior was never observed during therapy without retreat possibility. this study provides evidence that the possibility of retreat is instrumental in reducing stress and should be provided during aat using guinea pigs. in this form, aat elicits limited stress and may possibly even provide enrichment. further research is needed to understand factors influencing guinea pig behavior to ensure animal welfare in aais in the future. � the authors. published by elsevier inc. this is an open access article under the cc by-nc-nd license (http://creativecommons.org/licenses/by-nc-nd/ . /). introduction guinea pigs are included in various animal-assisted in- terventions (aais). however, there are currently no data ab basel (förderverein pro ity of basel (grant number karin hediger, swiss tropical - , switzerland. tel: er). inc. this is an open access article u investigating the effects of human contact or integration of animals in aais on guinea pig behavior. animal-assisted therapy (aat) is a form of aai defined as a goal- oriented therapeutic intervention with animals as an integral part delivered by health, education, and human service professionals (iahaio, ). aai research has documented numerous benefits for humans (virués-ortega et al., ; maujean et al., ), including a reduction in anxiety, depression, and posttraumatic stress disorder symptoms (o’haire et al., ), and seems to be beneficial in different populations such as people with dementia (olsen et al., ), psychiatric patients (rossetti and king, ), and patients with autism and behavioral difficulties (o’haire, ). nder the cc by-nc-nd license (http://creativecommons.org/licenses/by-nc-nd/ . /). delta: _given name delta: _surname delta: _given name delta: _surname delta: _given name http://creativecommons.org/licenses/by-nc-nd/ . / mailto:karin.hediger@unibas.ch http://crossmark.crossref.org/dialog/?doi= . /j.jveb. . . &domain=pdf www.sciencedirect.com/science/journal/ http://www.journalvetbehavior.com https://doi.org/ . /j.jveb. . . http://creativecommons.org/licenses/by-nc-nd/ . / https://doi.org/ . /j.jveb. . . https://doi.org/ . /j.jveb. . . w. gut et al. / journal of veterinary behavior ( ) e despite these known benefits, further research about the effects of aais on both human and animal well-being is needed. trans- disciplinary cooperation between human health care professionals, animal keepers, veterinarians, and ethologists is necessary. “one health” is an important framework for aat (chalmers and dell, ; hediger and beetz, ; takashima and day, ; turner, ) due to potential added value in terms of better health for all when compared to separated approaches (zinsstag et al., ). on a practical level, the interdependence of human and animal health in aat is reflected by guidelines (iahaio, ) emphasizing the need to consider safety and welfare for humans and animals. however, research focuses on the human health side, whereas little knowledge exists about the impact of aat on animal welfare. existing literature investigates only dogs (glenk, ) and horses (e.g., gehrke et al., ). guinea pigs (cavia aperea f. porcellus) are common as pets and in research (european commission, ) and also often integrated in aais (matuszek, ). there are a few studies investigating the effects of aai with guinea pigs on the human participants (marr et al., ; o’haire et al., ; ; talarovi�cová et al., ). however, no studies on the effect of human interaction on guinea pig behavior or well-being were found. to address this research gap, the aims of the study were to characterize behavioral changes in guinea pigs caused by human interactions and identify factors linked to guinea pig stress and well-being within the therapeutic setting. a widely accepted definition of the animal welfare concept re- fers to an animal’s attempts to cope with (broom, ) and the possibility to interact with their environment (ohl and van der staay, ). retreat possibility, allowing for free choice of human contact, is a factor which enhances an animal’s ability to cope within an environment. retreat possibility is clearly linked with improved well-being for different species living in captivity such as in zoos, laboratories, or agricultural settings (morgan and tromborg, ). guinea pigs, however, are often held and petted by humans, without having retreat possibility. we hypothesized that constant retreat possibility would be a mechanism to reduce stress and improve well-being of guinea pigs during aat. in the first step, we developed a specific ethogram to observe possible behavioral changes. then, we investigated the behavior of guinea pigs during aat with and without retreat possibility, in comparison to a control setting with retreat possibility and no human interaction. figure . a patient sitting in front of the table cage interacting with of the guinea pigs with assistance from an occupational therapist (therapy setting with retreat possibility). one guinea pig is eating on the board part of the table cage. the scene is posed with members of the study team to ensure anonymity of participating patients and therapists. material and methods subjects we observed guinea pigs (cavia aperea f. porcellus) from a group of six individuals used regularly in aat at rehab basel, a rehabilitation clinic in switzerland. they were of mixed sources and breeds, and individual identification occurred by natural markings. all animals were housed in a private household and had contact with humans on a daily basis beginning at to weeks. the in- dividuals that were comfortable with human interaction were transferred to the therapie-tiergarten at the rehabilitation clinic at the age of at least year and began assisting in the aat program. all guinea pigs were healthy and housed in accordance with swiss standards for animal welfare. they were held in groups. group consisted of -year-old females, whereas group consisted of -year-old females and -year-old castrated male. in this study, the behavior of the male was not further examined with respect to expected behavioral differences compared to the female guinea pigs (kunkel, ; rood, ). study design the study followed a randomized controlled within-subject design with repeated measurement. each guinea pig was observed in different settings: ( ) therapy setting with retreat possibility (twr, table cage with human interaction); ( ) therapy setting without (no) retreat possibility (tnr, lap of patient); ( ) control setting (cs, table cage without human interaction). there were a total of observations, consisting of observa- tions per guinea pig in both the therapy setting with retreat pos- sibility (n ¼ ) and the control setting (n ¼ ), as well as observations per guinea pig in the therapy setting without retreat possibility (n ¼ ). all settings took place in a room designed for aat at rehab basel, switzerland. for both the therapy setting with retreat pos- sibility and the control setting, the guinea pigs were placed in a table cage (see figure ). the cage had plexiglas� (polymethyl methacrylate) boards and contained shelters, twigs, wood shavings, hay, straw, and a bowl of water. this structure comprised the “cage part.” all elements were arranged in standardized locations (see appendix). during therapy, the front part of the plexiglas� board could be removed allowing the guinea pigs to access a wooden board with a pet bed on it. this portion is referred to as the “board part.” by choosing either the cage or the board part, the animal could respectively retreat from or approach the patient. for the therapy setting without retreat possibility, guinea pig was placed in a pet bed on the patient’s lap (see figure ). before each session, the guinea pigs were given at least a -minute acclimation time in the table cage. during this time, ambient noise and activity were kept to a minimum. the people recording the videos were in regular contact with the guinea pigs and maintained a neutral relationship by minimizing interactions during the standardized filming sessions. the animals were tested within the groups in which they were housed based on the principal of social buffering (hennessy et al., ). for each observation, animal was randomly defined as focal animal based on simple random numbers generated in excel figure . in the therapy setting without retreat possibility, a single guinea pig is placed in a pet bed on the lap of a seated patient. w. gut et al. / journal of veterinary behavior ( ) e (microsoft�). each observation took place on a different day, except for the therapy setting without retreat possibility that was con- nected to the therapy setting with retreat possibility and followed just afterward. for that, one of the guinea pigs of the group was randomly chosen to be placed on the patient’s lap for minutes following the therapy setting with retreat possibility. for each guinea pig, the therapy setting with retreat possibility was defined as the starting condition to ensure that the following observation some days later in the control setting could be matched for length of the session. however, both groups were accustomed to all settings before the study began so that there was no novelty effect and no need to randomize the starting condition. there was no randomization regarding the involved therapist and patient, as it was predetermined which guinea pig group assisted with which patient. in each session, the following variables were controlled: time of day, time since last feeding, presence of social partners, amount and kind of food, scent of other animals in the litter, position of shelters and water bowl in the table cage, and placement of the observer. therapy room temperature, outside temperature, the attending therapist and animal keeper, patient identification, and any unex- pected events were recorded. therapy setting with retreat possibility in this setting, actual aat sessions with patients from the clinic were observed. one of the guinea pig groups was placed in the table cage where they had the possibility to retreat or to walk onto the board part of the table cage the entire time. the session dura- tion ranged from to minutes with a frequency of to times per week. the length of the sessions was determined by patient ability and therapeutic goals and was defined by the therapist, who was not involved in the study. during each session, a patient, therapist, animal keeper, and person filming were present. animal keepers and therapists collaborated closely to oversee interactions between animals and patients and ensure the well-being of all participants. patients were offered a broad range of activities, including cutting vegetables for the guinea pigs; filling the cut vegetables in wooden pet puzzle toys, branches with holes, or a wooden board with holes; trying to guide the guinea pigs over a wooden seesaw; or brushing them. patients often encouraged the guinea pigs to approach by feeding them and attempted to pet them. therapy setting without retreat possibility after the therapy setting with retreat possibility, guinea pig was randomly chosen and placed on the lap of the patient. the animal keeper motivated the guinea pig to walk onto a pet bed voluntarily, only handling the animal if necessary. then the pet bed, with the guinea pig on it, was placed on the lap of the patient. the patient stroked and fed the guinea pig for to minutes. during this time, the guinea pig was observed closely by the keeper for any defined breakup criteria. control setting in this setting, the guinea pigs were placed into the table cage with conditions comparable to the aat sessions (time of day, room temperature, and duration) except for the human interaction. only the person filming was present. a control session always followed an aat session on a different day to ensure that the duration of the sessions was similar and the same kind and amount of food was offered as during the aat condition. no additional play items were used in the control setting because these are an integral part of the therapy, so the guinea pigs only encounter them when interacting with people. data collection in a first step, an ethogram was developed to observe possible behavioral changes caused by human interaction. online databases were searched (pubmed, medline, science direct, web of science, and google scholar; key words: cavy, cavia, caviomorph rodent, ethology, behavior, stress, comfort, vocalization, animal assisted therapy, pet therapy, and animal assisted intervention) for existing guinea pig ethograms, and different guinea pig behavior experts were consulted. our ethogram was structured similarly to the most frequently referenced ethograms (kunkel, ; rood, ). the following behavior groups were included: (a) individual behavior: ingestive, locomotive, and comfort behavior (b) interactions with the environment: explorative and non- explorative behavior (c) social behavior: sociopositive and general socionegative behavior (d) active human-animal interaction (hai): sociopositive hai and general socionegative hai (e) passive human animal interaction: stroked (f) vocalization (g) other groups: visibility, unexpected behavior, and on-going observation a detailed description of the ethogram is found in the additional material (see appendix). all sessions were filmed using a sony� camcorder. animal behavior was analyzed using continuous recording and focal sam- pling (altmann, ) through video coding with noldus observer� xt . . before coding any study videos, coders were trained. intrarater reliability ranged between . and . and interrater reliability was . , as measured by cohen’s kappa (cohen, ). data processing and statistical analysis frequencies of short countable behaviors were calculated as n/ s. longer enduring state behaviors were calculated as per- centages of the observed time. for most behaviors, the denomi- nator “visible and on-going” was used. this ensured that the reference time ( %) only counted when the therapy was on-going and the animal was visible in the camera. for “vocalization,” “hid- ing,” “on board part,” and “in cage unsheltered,” only the w. gut et al. / journal of veterinary behavior ( ) e denominator “on-going” was used because these behaviors also occurred when the animal was not visible. countable behavior data were analyzed using a generalized linear mixed model with poisson distribution. in case of over- dispersion, observed via deviance (df), we fitted a model using the negative binomial distribution. setting was used as fixed effect, and individual guinea pigs were used as random effect. the logarith- mized duration of the session was specified as an offset variable. as effect size, the incidence rate ratio (irr) was calculated, that is, the relative change in the rates of the observed event. to analyze the data of state behaviors, arcsine transformed percentage of the analyzed time in total was used. a generalized linear mixed model with setting (twr, tnr, or cs) as fixed effects and individual guinea pig as random effect was used. as effect size, the linear coefficient (b) was calculated, that is, the difference in the proportions but estimated on arcsine scale. we used ibm spss� statistics, version . , for all analyses and considered p values � . as statistically significant. results therapy with retreat possibility versus control setting frequency of hiding was increased in the therapy setting with retreat possibility (irr ¼ . , ci ¼ . to . , p < . ), whereas duration spent hiding remained the same when compared with the control setting (see figures and and tables and ). time spent in the cage unsheltered decreased significantly during therapy with retreat possibility (b ¼ . , ci ¼ � . to . , p ¼ . ). there was a trend of increased freezing (irr ¼ . , ci ¼ . to . , p ¼ . ), whereas startling was increased significantly in the therapy setting with retreat possibility (irr ¼ . , ci ¼ . to . , p ¼ . ). other be- haviors such as duration of resting, frequency of general socio- negative, and comfort behaviors did not differ between settings. during therapy with retreat possibility, duration of locomotion (b ¼ . , ci ¼ . to . , p < . ), frequency of explorative behavior (irr ¼ . , ci ¼ . to . , p < . ), and time spent not eating were increased (b ¼ . , ci ¼ . to . , p < . ). figure . duration of observed state behaviors which differ significantly between conditio comparisons. hi, human interaction; twr, therapy setting with retreat possibility; cs, con therapy without retreat versus with retreat possibility during therapy without retreat possibility, the guinea pigs were stroked longer compared to the therapy setting with retreat pos- sibility (b ¼ � . , ci ¼ � . to � . , p < . ). time spent in locomotion decreased in the therapy setting without retreat pos- sibility (b ¼ � . , ci ¼ � . to � . , p < . ). even though total time spent not eating increased in the therapy setting without retreat possibility (b ¼ . , ci ¼ . to . , p ¼ . ), time spent eating with human interaction remained the same as in the therapy setting with retreat possibility. further behavioral changes in the therapy setting without retreat possibility were similar to the changes in the control setting and are described in more detail in the following section. therapy without retreat versus therapy with retreat possibility and control setting during the therapy setting without retreat possibility, there was a strong increase in frequency of freezing compared to both the therapy setting with retreat possibility and the control setting (twr: irr ¼ . , ci ¼ . to . , p < . ; cs: irr ¼ . , ci ¼ . to . , p < . ). time spent not eating (twr: b ¼ . , ci ¼ . to . , p ¼ . ; cs: b ¼ . , ci ¼ . to . , p < . ) and time spent vocalizing increased significantly compared to both conditions (twr: b ¼ . , ci ¼ . to . , p ¼ . ; cs: b ¼ . , ci ¼ . to . , p < . ). in the therapy setting without retreat possibility condition, resting and comfort behaviors were never observed. no other significant changes occurred in the control setting that did not correspond to those in the therapy setting with retreat possibility. individual differences and other factors five behaviors were considered most important concerning either stress or enrichment and were examined more closely for other influence factors. the key behaviors were locomotion, explorative behavior, comfort behavior, freezing, and hiding. the individual guinea pigs and the different patients, therapists, and keepers were examined as influencing factors. ns. error bars denote standard error of the mean, * indicate statistically significant trol setting; tnr, therapy setting without (no) retreat possibility. figure . frequency of count behaviors which differ significantly between conditions. error bars denote one standard error of the mean, * indicate statistically significant com- parisons. twr, cs, control setting; tnr, therapy setting without (no) retreat possibility. w. gut et al. / journal of veterinary behavior ( ) e locomotion was influenced significantly by the therapist (b ¼ � . , ci ¼ � . to � . ; p ¼ . ). there was also a ten- dency that it was influenced by the keeper (b ¼ . , ci ¼ � . to . , p ¼ . ). explorative behavior was influenced by the patient (irr ¼ . , ci ¼ . to . , p < . ), therapist (irr ¼ . , ci ¼ . to . , p < . ), and individual guinea pig (irr ¼ . , ci ¼ . to . , p < . ). comfort behavior was not influenced by these factors. table state behaviors behavior setting n duration m being stroked twr . tnr . eating with hi twr . tnr . eating without hi twr . cs . tnr . not eating twr . cs . tnr . locomotion twr . cs . tnr . resting twr . cs . tnr . standing still twr . cs . tnr . hiding twr . cs . on board part twr . cs . in cage unsheltered twr . cs . vocalization twr . cs . tnr . twr, therapy with retreat; cs, control setting; tnr, therapy no retreat; hi, human interact of observed time; sd, standard deviation; coef, coefficient (effect size); ci, confidence in a statistically significant. the keeper (irr ¼ . , ci ¼ . to . , p ¼ . ) and the individual guinea pigs significantly (irr ¼ . , ci ¼ . to . , p < . ) influenced the frequency of freezing, and the patient influ- enced the frequency of freezing by trend (irr ¼ . , ci ¼ . to . , p ¼ . ). the duration spent hiding was influenced by the individual personality of the guinea pig (b ¼ . , ci ¼ � . to . , p ¼ . ), whereas the patient present during therapy influenced the frequency of hiding (irr ¼ . , ci ¼ . to . , p < . ). sd comparison coef % ci p value . tnr-twr � . � . to � . < . a . . tnr-twr . � . to . . . . twr-cs � . � . to � . < . a . tnr-cs � . � . to � . < . a . tnr-twr � . � . to . . . twr-cs . . to . < . a . tnr-cs . . to . < . a . tnr-twr . . to . . a . twr-cs . . to . < . a . tnr-cs � . � . to . . . tnr-twr � . � . to � . . a . twr-cs . � . to . . . tnr-cs perfect prediction . twr-tnr perfect prediction . twr-cs � . � . to � . < . a . tnr-cs � . � . to . . . tnr-twr . � . to . . . twr-cs . � . to . . . . twr-cs . � . to . . . . twr-cs . � . to . . a . . twr-cs . � . to . . . tnr-cs . . to . . a . tnr-twr . . to . . a ion; n, number of sessions; duration, total observed duration (� s); m, mean in % terval. table count behaviors behavior setting n total m sd comparison rr % ci p value socionegative behavior twr . . twr-cs . . e . . cs . . socionegative active hai twr . . tnr-twr . . e . . tnr . . startling twr . . twr-cs . . e . . a cs . . tnr-cs . . e . . tnr . . tnr -twr . . e . . freezing twr . . twr-cs . . e . . cs . . tnr-cs . . e . < . a tnr . . tnr-twr . . e . < . a comfort behavior twr . . twr-cs . . e . . cs . . tnr-cs perfect prediction tnr . . tnr-twr perfect prediction explorative behavior twr . . twr-cs . . e . < . a cs . . hiding twr . . twr-cs . . e . < . a cs . . twr, therapy with retreat; cs, control setting; tnr, therapy no retreat; hai, active human animal interaction; n, number of sessions; total, total number of events within all observations; m, mean per seconds; sd, standard deviation; rr, rate ratio (effect size); ci, confidence interval. a statistically significant. w. gut et al. / journal of veterinary behavior ( ) e descriptive statistics the following behaviors occurred too rarely to compare be- tween conditions and were therefore not described: sociopositive active hai (n [twr] ¼ , n [tnr] ¼ ) and jumping (n [twr] ¼ , n [cs] ¼ ). discussion guinea pigs showed higher frequency, but not duration, of hiding and an increase in startling, as well as more locomotion, explorative behavior, and time spent not eating during therapy with retreat possibility compared to the control setting without human interaction. without retreat possibility, guinea pigs showed a strong increase in freezing, not eating and vocalizing. locomotion and resting decreased without retreat possibility. in previous studies, stress in guinea pigs was investigated in the context of social buffering (hennessy et al., ; maken and hennessy, ), isolation (hennessy et al., ), or social con- flicts (haemisch, ; sachser and lick, ; ) in combina- tion with novel environments as a stressor. research showed that stress led to a reduction in comfort behavior, social behavior, explorative behavior, and an increased amount of freezing and withdrawal (anthony et al., ). stress also led to reduced eating, exploration, and sexual behaviors (hennessy et al., ). further stress-related behaviors were cataloged: vocalization, freezing, startling, and altered activity, such as hiding, stampeding behavior, fighting, teeth chattering, or stereotypical behaviors like bar biting or barbering (brandão and mayer, ; brewer et al., ; hennessy et al., ; king, ; sachser and lick, ). the increase in hiding, startling, freezing, and vocalizing as well as the reduction in comfort behavior and time spent eating due to human interaction which we found in our study can therefore be viewed as stress-related behaviors. the different settings with human interaction differed in the amount of observed behavioral changes related to stress. we, therefore, conclude that the therapy settings with and without retreat possibility can be seen as different levels of stress applied to the guinea pigs, with a higher level of stress during therapy without retreat possibility. we did not find so-called “stress-induced sickness behaviors” such as crouching, piloerection, or eye-closing (hennessy et al., ), and there was no increase in fighting (socionegative behavior) in either therapy condition. thus, we conclude that stress was not notably high under either condition. a main reason the guinea pigs experienced higher stress in the lap condition could be due to the limited retreat possibility. seeking shelter is a natural behavior of guinea pigs. ohl and van der staay ( ) suggested that when this need cannot be met, stress results. another factor might be lack of social partners in the lap context, whereas in the therapy setting with retreat possibility, animals were within their group. social partners play an important role in stress buffering (hennessy et al., ). also, the guinea pigs were not acclimatized to the lap setting to the same degree, despite being regularly handled, while the table cage was a familiar environment. the occurrence of startling during the therapy setting without retreat possibility likely decreased due to the increased time spent freezing. variations in time spent in locomotion or eating were possibly based on individual coping tactics or perception of stress. in addition to the stress-related changes, we also observed changes in enrichment-associated behavior relative to the condi- tions. enrichment is designated as change in the frequency of behavior without occurrence of stress-associated behavior (brewer et al., ). it is therefore closely linked to stress. enrichment en- ables animals to express the full range of their species-typical behavioral patterns and includes environmental, social, and nutri- tional enrichment along with foraging (hutchinson et al., ). enrichment is an important component of animal welfare. it can be integrated into fraser’s concept of “needs” and “opportunities” and provide opportunities for pleasure (fraser and duncan, ). in this study, the guinea pigs showed more explorative behavior and more locomotion during therapy with retreat possibility when compared to the control setting. these behaviors are directly enrichment related (brewer et al., ). therefore, we conclude that even though aat in the table cage may cause a small amount of stress, it primarily functions as enrichment for the guinea pigs. our data confirm that shelter is an important component of environmental enrichment. shelters were used more frequently in the therapy setting with retreat possibility than in the control condition and may have contributed to stress reduction. nordlund ( ) found that even the design of the shelter plays a role in decreasing social conflict and stress. guinea pigs prefer low vege- tation in the wild (cassini and galante, ) and roofed areas under domestic conditions (büttner, ; lee et al., ). there- fore, shelters should be provided to accommodate each individual (king, ; scharmann, ). w. gut et al. / journal of veterinary behavior ( ) e social enrichment can be provided via conspecific (other guinea pigs) or contraspecific (other species or humans) interactions. although conspecific group housing is socially important (berryman, ; kaiser et al., ), interaction with humans can also be a supplement. in our study, the guinea pigs freely chose to interact with the humans in the therapy setting with retreat pos- sibility. such human interaction can act as social enrichment, whereas the feeding may function as a foraging and nutritional enrichment. when animal-human interaction was examined more closely in this study, approximately a quarter of the time was spent eating food acquired from the human in both therapy settings (twr and tnr). there was a trend for a longer duration spent on the board part in the therapy setting with retreat possibility compared to the control setting, which may be in the context of being fed on the board part. this shows that guinea pigs spend time interacting with humans when they can choose freely but only to a certain degree. the guinea pigs very seldom displayed sociopositive behavior directed toward a human. there was no difference in the frequency of socionegative behavior directed toward a human between the therapy settings with and without retreat possibility. in the therapy setting with retreat possibility, the guinea pigs were only stroked for a small fraction of the total time, compared to the therapy setting without retreat possibility, where they were stroked for a majority of the total time. this was probably due to the limited possibility of retreat and may also contribute to the higher degree of stress in the lap setting. our data show that in addition to the setting, the individual personality of the guinea pig is an important factor, as also docu- mented by zipser et al., ( ). moreover, the relationship with the patient, therapist, and keeper are relevant factors influencing guinea pig behavior. limitations a limitation of the study was the sample size. we investigated female individuals and found distinct individual differences be- tween the guinea pigs. therefore, our results should be cautiously generalized to other guinea pigs. the total of observations was too small to thoroughly examine rare behaviors like jumping and sociopositive interaction. moreover, not all guinea pigs were tested with all patients, therapists, and keepers. the exploratory findings regarding these factors must be interpreted with caution and should be seen as a hypothesis-generating outcome. another limitation was the fact that the study could not be blinded. however, the video coders were not involved with aat before the study. to minimize biases, there was a detailed coding scheme, and intrarater and interrater reliability was high. the study could only be randomized to a certain degree, as the combination of a guinea pig group with a patient and their therapist was predetermined. finally, observed behavior should always be interpreted with caution. we interpreted our data on the basis of existing literature on stress in guinea pigs. it is unclear how these interpretations correspond with the guinea pigs’ perception and physiological or even health or longevity outcomes. strengths this is the first study investigating behavioral effects in guinea pigs assisting in aat. we compared different types of therapy settings. this gives new insights on how to reduce stress and enhance well-being, hopefully leading to guidelines for aai with guinea pigs. in addition, we designed the first specific ethogram for observing human-guinea pig interaction, which provides a useful tool for future research. we carefully controlled for confounding factors to ensure high internal validity. however, we studied aat sessions in an on-going program with real patients. we observed guinea pigs that were already being used in the program, so we were not able to select for special criteria other than sex. our approach ensures high external validity and reflects the actual practice. implications for research our study is a first step toward understanding the effects of human-animal interaction on guinea pig well-being, and specif- ically the effects of integrating guinea pigs into aat. further research is needed to investigate the effects of different types of human-animal interaction and environments more closely on a descriptive level. further research regarding the meaning and clinical relevance of the observed behavioral changes is needed. it remains unclear what amount of change should be considered as “distress” or “eustress” and what intensity is associated with health problems. it is important to further combine behavioral observa- tions with physiological measures, such as cortisol measurements in previous studies (maken and hennessy, ; zipser et al., ; haemisch, ; brewer et al., , sachser, ). behavior during therapy should be compared with that in a natural habitat. further research should also include more individuals to investigate whether sex, age, personality, amount of experience in aat, and contact with humans in general have an effect. we also suggest testing more different setting variables such as the length of a therapy session, the different humans present, and social buffering. implications for practice guinea pigs are useful in therapeutic settings (flom, ; talarovi�cová et al., ; o’haire, ; o’haire et al., ; o’haire et al., ; o’haire et al., ); however, the procedure conditions vary markedly. statements in the literature range from guinea pigs “generally like to be held” (zawistowski, ) to guinea pigs “are very prone to stress” (hubrecht and kirkwood, ; king, ). our data show that the setting is crucial to reduce stress and ensure well-being. clearly, domesticated guinea pigs are less susceptible to stress and less aggressive than wild guinea pigs (sachser, ; künzl and sachser, ; brust and guenther, ). however, they are still timid flight animals which display subtle defense mechanisms or signs of stress in the face of threats. they rarely bite, preferring to retreat and hide, alternatively freezing when retreat is not possible. they rarely exhibit sociopositive, nonsexual interactions as adults within a group (kunkel, ; rood, ), which was confirmed in our observations. therefore, it is not natural for guinea pigs to be stroked or touched. we highly recommend that guinea pigs are given the possibility to retreat whenever possible, so they can freely choose to interact with humans. our findings have implications for all guinea pigs in human care. many more guinea pigs are kept as pets in private households. the factors described in this study for guinea pigs assisting in therapy are also relevant for human-guinea pig interactions in general to ensure animal well-being. it is important for pet owners to un- derstand that free interactions and retreat possibilities are relevant for species-appropriate handling and keeping. conclusion our data show that the setting for human-guinea pig in- teractions is crucial. a “good practice” for guinea pig-assisted w. gut et al. / journal of veterinary behavior ( ) e interventions includes retreat possibilities whenever possible to ensure free choice of human interaction. in this way, stress can be reduced, and aat might even constitute enrichment for the animal. acknowledgments the authors would like to thank bettina finger and christian weber and the therapie-tiergarten team for their cooperation during the study and the involved therapists and patients for participating. they also thank iris marti and paula ospitia rodriguez for help in designing the ethogram and collecting data. special thanks to dennis turner, gottfried morgenegg, sabine gebhardt- henrich, and hanno würbel for discussion and input on human- guinea pig interaction and advice in designing the study and commenting on the ethogram. they also thank silvia kaiser for reviewing the ethogram. authorship statement: k.h. conceived the idea of the study. the concept of the study was elaborated by k.h., l.c., and j.z. w.g. designed and conducted the experiments under the supervision of k.h. and j.z. the statistical approach was elaborated by j.h., and data were analyzed by k.h., j.z., j.h., and w.g. the paper was written by k.h. and w.g. with input from l.c. and j.z. ethical considerations this study was approved by the veterinary office of the canton basel-stadt, switzerland, and by the human ethics committee eknz (ethics committee for northwest and central switzerland). the study was conducted in accordance with the animals (scientific procedures) act , european directive eu / , and the guidelines for the use of animals in research of the association for the study of animal behaviour and the animal behaviour society. aat was performed according to the iahaio guidelines (iahaio, ). a therapy session lasted for a maximum of minutes during defined time slots with defined breaks between sessions. break-off criteria were defined as an excessive display of aggression by the human or animal during aat. the condition without retreat possibility was limited to minutes, and the additional break-off criterion, an excessive display of stress-associated behavior by the animal (e.g., piloerection, eye-closing, or attempts to flee like jumping out of the pet bed on the patient’s lap), was included. no session had to be ended early, and no adverse incidents occurred. conflict of interest the authors state no conflict of interest. supplementary data supplementary data related to this article can be found at https://doi.org/ . /j.jveb. . . . references altmann, j., . observational study of behavior: sampling methods. behaviour , e . anthony, a., ackerman, e., lloyd, j.a., . noise stress in laboratory rodents. i. behavioral and endocrine response of mice, rats, and guinea pigs. j. acoust. soc. am. , e . berryman, j.c., . social behaviour in a colony of domestic guinea pigs: aggres- sion and dominance. z. tierpsychol. , e . brandão, j., mayer, j., . behavior of rodents with an emphasis on enrichment. j. exotic 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http://refhub.elsevier.com/s - ( ) - /sref http://refhub.elsevier.com/s - ( ) - /sref http://refhub.elsevier.com/s - ( ) - /sref http://refhub.elsevier.com/s - ( ) - /sref http://refhub.elsevier.com/s - ( ) - /sref http://refhub.elsevier.com/s - ( ) - /sref http://refhub.elsevier.com/s - ( ) - /sref http://refhub.elsevier.com/s - ( ) - /sref 	the effect of human interaction on guinea pig behavior in animal-assisted therapy 	introduction 	material and methods 	subjects 	study design 	therapy setting with retreat possibility 	therapy setting without retreat possibility 	control setting 	data collection 	data processing and statistical analysis 	results 	therapy with retreat possibility versus control setting 	therapy without retreat versus with retreat possibility 	therapy without retreat versus therapy with retreat possibility and control setting 	individual differences and other factors 	descriptive statistics 	discussion 	limitations 	strengths 	implications for research 	implications for practice 	conclusion 	acknowledgments 	ethical considerations 	conflict of interest 	supplementary data 	references wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ ; : - .j nucl med. amy tran, betty s. pio, bahareh khatibi, johannes czernin, michael e. phelps and daniel h.s. silverman outer-quadrant tumors: comparison with long-term clinical outcome f-fdg pet for staging breast cancer in patients with inner-quadrant versus http://jnm.snmjournals.org/content/ / / this article and updated information are available at: http://jnm.snmjournals.org/site/subscriptions/online.xhtml information about subscriptions to jnm can be found at: http://jnm.snmjournals.org/site/misc/permission.xhtml information about reproducing figures, tables, or other portions of this article can be found online at: (print issn: - , online issn: - x) samuel morse drive, reston, va . snmmi | society of nuclear medicine and molecular imaging is published monthly.the journal of nuclear medicine © copyright snmmi; all rights reserved. by on march , . for personal use only. jnm.snmjournals.org downloaded from by on march , . for personal use only. jnm.snmjournals.org downloaded from http://jnm.snmjournals.org/content/ / / http://jnm.snmjournals.org/content/ / / http://jnm.snmjournals.org/site/misc/permission.xhtml http://jnm.snmjournals.org/site/misc/permission.xhtml http://jnm.snmjournals.org/site/subscriptions/online.xhtml http://jnm.snmjournals.org/site/subscriptions/online.xhtml http://jnm.snmjournals.org/ http://jnm.snmjournals.org/ http://jnm.snmjournals.org/ http://jnm.snmjournals.org/ f-fdg pet for staging breast cancer in patients with inner-quadrant versus outer-quadrant tumors: comparison with long-term clinical outcome amy tran, bs; betty s. pio, ms; bahareh khatibi, bs; johannes czernin, md; michael e. phelps, phd; and daniel h.s. silverman, md, phd department of molecular and medical pharmacology, david geffen school of medicine, ucla, los angeles, california extraaxillary metastases (i.e., in the absence of axillary involve- ment) are more likely to develop in patients with inner-quadrant (iq) breast cancer than in patients with outer-quadrant (oq) primary tumors. the relative difficulty of identifying extraaxillary metastases may lead to understaging of cancer in these patients. this study examined whether f-fdg pet findings were differentially asso- ciated with the location of primary tumors, and with long-term prognosis, in iq and oq patients. methods: follow-up data were obtained for patients whose breast cancer was staged by pet and who were documented to have iq (n � ) or oq (n � ) primaries. results were stratified according to pet findings con- sistent with different metastatic patterns. data were further ana- lyzed with respect to disease outcome after a mean -y follow-up period. results: among iq patients, progressive disease was identified in . %, compared with . % of oq patients, for a relative risk (rr) of . . of patients with pet findings of isolated extraaxillary metastases, . % had progressive disease, com- pared with . % of other patients (rr � . ), and . % of iq patients had isolated extraaxillary metastases identified on pet, compared with . % of oq patients (rr � . ). conclusion: iq patients demonstrated a -fold greater frequency of pet findings of isolated extraaxillary metastasis, and such findings were asso- ciated with triple the risk for disease progression. patients with iq tumors could be vulnerable to understaging with conventional staging approaches and may particularly benefit from pet during the staging process. key words: breast cancer; pet; fdg j nucl med ; : – in the united states, breast cancer ranks second among cancer deaths in women ( ), and patients with primary lesions in the inner quadrant (iq) of the breast have a higher mortality rate than patients with primary lesions in the outer quadrant (oq) ( – ). iq primary tumors, which are located in the medial region of the body, have a higher propensity to metastasize to extraaxillary sites without metastasizing to axillary regions ( , ). because iq patients have a greater incidence of these isolated metastases, their disease is un- derstaged more frequently. the higher mortality rate for iq patients may in part be due to understaging and subsequent undertreating associ- ated with the difficulty of detecting isolated extraaxillary metastases using conventional imaging methods. several recent studies comparing f-fdg pet and conventional diagnostic techniques have reported that pet is more sen- sitive in detecting metastatic lesions, in particular extraax- illary metastases ( – ), but that pet is less sensitive in identifying axillary lymph node involvement ( – ). the ability of pet to detect extraaxillary metastases suggests that patients with iq primary tumors may benefit from the use of pet for staging and restaging evaluations. recognition of extraaxillary processes early during the course of disease could have profound implications on the future management of, and administration of therapy to, breast cancer patients. thus, in this study, we set out to evaluate the prognostic value of f-fdg pet by looking at the relationship between pet findings of hypermetabolic foci and the clinical outcome of patients with iq versus oq primary breast tumors. materials and methods patient population the study population (n � ) included all breast cancer patients who were referred to our facility for f-fdg pet staging examinations through december , for whom documentation allowing retrospective assignment of primary tumors to oq or iq locations was retrievable, and for whom longitudinal information on disease assessment was available. patients with records indi- cating primary tumors in both iq and oq (n � ) locations or in the areolar region (n � ) were excluded from this analysis. data pertaining to each patient’s initial evaluation and subsequent received dec. , ; revision accepted may , . for correspondence or reprints contact: daniel h.s. silverman, md, phd, department of molecular and medical pharmacology, university of california, los angeles, leconte ave., center for health sciences, ar- , los angeles, ca - . e-mail: dsilver@ucla.edu guest editor: dominique delbeke, md, phd pet and inner-quadrant breast cancer • tran et al. by on march , . for personal use only. jnm.snmjournals.org downloaded from http://jnm.snmjournals.org/ http://jnm.snmjournals.org/ course of therapy were used through a protocol approved by the office for protection of research subjects of the ucla institu- tional review board. clinical data we obtained clinical data on each patient through review of inpatient and outpatient medical records and through a written study questionnaire completed by the patient’s referring or most recent managing oncologist. the clinical data, which included treatment history, stage of disease, recent tumor marker values, known tumor sites, date of most recent examination, and current disease status, allowed the disease to be classified as progressive or nonprogressive. if the disease was nonprogressive, we required a minimum of mo of clinical follow-up data documenting that the patient’s condition was stable. pet imaging patients fasted for at least h before intravenous injection of mbq ( mci) of f-fdg. whole-body pet emission data were obtained using siemens ecat exact hr or hr� scan- ners (cti pet systems) for min per bed position with -dimen- sional acquisition. pet scans were read by the nuclear medicine physicians on clinical service at the time of acquisition, who were unaware of this study and, in most cases, of the quadrant of the primary tumor. statistical analysis statistical analysis of risk ratios was performed on collected data organized into a � table. significant differences in continuous variables between each stratum of n patients were assessed by a -sided unpaired t test. within each group, the strength of the association of pet findings with clinical outcome was assessed by the � test. ninety-five percent confidence inter- vals (cis) for the probability (p) of each stratum of n subjects were calculated as the product of . and the square root of p( � p)/n. calculation of relative risk (rr) and odds ratios was based on methods described by gordis, and calculation of cis was based on methods described by armitage and berry ( , ). results distribution of hypermetabolic foci review of medical records revealed that more than one fourth of patients had primary tumors in the iq ( %). the remaining patients had primary tumors in the oq ( %), in both the iq and the oq ( %), or in the areolar region ( %). review of original pet reports allowed stratification of oq and iq patients into subgroups based on whether hyper- metabolic foci believed to be consistent with metastatic disease were found. seventy-two examinations were for initial staging, and were for restaging after one or more courses of therapy. for women who underwent multiple pet examinations, the scan obtained at the time closest to initial diagnosis was used. during follow-up after pet, of the patients received systemic treatment either as adjuvant therapy (n � ) or for metastatic disease (n � ). among those patients, % had histories of iq (n � ) and % had histories of oq (n � ) primary tumors, similar to the distribution in the study population overall. the mean ages of iq ( � y) and oq ( � y) patients were similar. on the basis of findings noted on the f-fdg pet reports, patients were stratified into of groups: extraaxillary metastasis only, axillary metastasis only, both extraaxillary and axillary metastases, or no me- tastasis (figs. and ). some patients had multiple sites of metastasis. extraaxillary tumor sites included the mediasti- nal or internal mammary nodes (n � ), supraclavicular region (n � ), brain (n � ), osseous processes such as spine and joints (n � ), liver (n � ), and lung or pleural cavity (n � ). in iq patients with isolated extraaxillary disease, tumor sites were the brain (n � ), supraclavicular region (n � ), mediastinal or internal mammary nodes (n � ), osseous processes (n � ), liver (n � ), and lung or pleura (n � ). in oq patients with isolated extraaxil- lary disease, tumor sites were the supraclavicular region (n � ), mediastinal or internal mammary nodes (n � ), osseous processes (n � ), liver (n � ), and lung or pleura (n � ). within the group of oq patients, . % (n � ) had extraaxillary metastases, . % (n � ) had axillary me- tastases, . % (n � ) had both extraaxillary and axillary metastases, and . % (n � ) had no metastases identi- fied on pet (fig. a). for iq patients, . % (n � ) had extraaxillary metastases, . % (n � ) had axillary metas- tases, . % (n � ) had both extraaxillary and axillary metastases, and . % (n � ) had no identified metastases (fig. b). the iq group thus exhibited a higher frequency of pet findings for isolated extraaxillary metastasis, whereas the oq group exhibited a higher frequency of pet findings for axillary metastasis only, and the rr for finding isolated extraaxillary metastases in iq ( . %; % ci, figure . (a) distribution of pet find- ings of hypermetabolic foci for oq pa- tients. (b) distribution of pet findings of hypermetabolic foci for iq patients. eax � extraaxillary; ax � axillary; both � axillary and extraaxillary; none � no metas- tases. the journal of nuclear medicine • vol. • no. • september by on march , . for personal use only. jnm.snmjournals.org downloaded from http://jnm.snmjournals.org/ http://jnm.snmjournals.org/ %– %) versus oq ( . %; % ci, %– %) patients was . ( % ci, . – . ). clinical follow-up data obtained for both iq and oq patients indicated that, during the average post-pet follow-up of about y, % of the patients experienced disease progression whereas ( %) maintained a disease-free or stable clinical course. the average follow-up was � mo and � mo for the iq and oq groups, respectively. patients within each group were stratified according to whether their disease was progressive or nonprogressive (stable or regressed). each of the subgroups based on hypermetabolic foci was also stratified according to such outcome data (fig. ). the analysis revealed disease progression among . % ( / ) of iq patients with isolated extraaxillary metastases, compared with . % ( / ) of iq patients with other patterns of metastases or no metastases (rr � . , . %/ . %). the risk for disease progression was . times greater among oq patients with pet findings of isolated extraaxillary metastases ( %, / ) than among oq pa- tients with other patterns of metastases or no metastases ( . %, / ). the proportion of iq patients with progres- sive disease ( . %, / ) was twice the proportion of oq patients with progressive disease ( . %, / ). for the entire study group, the frequency of progressive disease documented in patients with pet findings of isolated ex- figure . whole-body coronal f-fdg pet scans of breast cancer patients, with ar- rows indicating extraaxillary metastases in chest and supraclavicular regions (a), metas- tasis in right axilla (b), and axillary and ex- traaxillary metastases in chest, lumbar, and iliac regions (c). figure . breakdown of clinical outcomes and pet findings for different primary-tumor locations. pet and inner-quadrant breast cancer • tran et al. by on march , . for personal use only. jnm.snmjournals.org downloaded from http://jnm.snmjournals.org/ http://jnm.snmjournals.org/ traaxillary metastases was . % ( / ), versus . % ( / ) for other patients, for an rr of . . clinical data allowed further stratification of patients into groups accord- ing to the type of post-pet therapy (adjuvant, for metastatic disease, or none) received during follow-up. among those who received adjuvant therapy (n � ), . % ( / ) of iq patients had pet findings of isolated extraaxillary metasta- ses, compared with . % ( / ) of oq patients (rr � . ) (fig. ). similarly, for patients who received post-pet treatment for metastatic disease (n � ), iq patients had a greater frequency of pet findings of isolated extraaxillary metastases (rr � . , . %/ . %). for patients under- going systemic therapy, quadrant-associated risk of progres- sion was particularly heightened when the therapy was adjuvant; . % ( / ) of iq patients were documented to have progressive disease, versus . % ( / ) of oq pa- tients, for an rr of . . discussion in breast cancer patients with primary tumors in an oq, metastases are more often in the axillary lymph nodes, whereas patients with primary tumors in an iq more often have extraaxillary metastatic disease. isolated extraaxillary metastases can go undetected during conventional staging, possibly contributing to the higher mortality rate of iq patients than of oq patients. an evaluation of , breast cancer patients found that those with primary tumors in central or iq locations had a % greater chance for devel- opment of distant metastases and a % higher mortality rate than did patients with oq primary tumors ( ). another study found patients with medial primary breast tumors to have double the risk of patients with lateral tumors for relapse of disease and for breast cancer death ( ). the higher mortality rate associated with lesions in the iq may result from the greater difficulty in detecting spread of disease to extraaxillary sites. accurate staging after initial diagnosis of disease is critical for determining the most appropriate course of therapy and may thereby affect clin- ical outcome. the longitudinal clinical information collected here com- prises a database of pet findings that one can relate to primary tumor location and subsequent disease course. pa- tients with and without disease progression did not signifi- cantly differ in age at the time of pet or in the length of follow-up. patients with iq primary tumors had a -fold greater frequency of pet findings of isolated extraaxillary metastasis and a greater risk for development of progressive disease than did patients with oq primary tumors. in addi- tion, patients who had isolated extraaxillary metastases identified by pet had triple the risk for disease progression of those who did not. this discovery suggests that iq patients with pet findings of isolated extraaxillary metas- figure . breakdown of clinical outcomes and pet findings for patients who received adjuvant treatment after pet. among patients who received adjuvant treatment, . % ( / ) had iq tumors and . % ( / ) had oq tumors. the journal of nuclear medicine • vol. • no. • september by on march , . for personal use only. jnm.snmjournals.org downloaded from http://jnm.snmjournals.org/ http://jnm.snmjournals.org/ tases may not have received treatment as adequate as that received by iq patients with no or other patterns of metas- tases or by oq patients overall. a potential limitation of this study is the question of the generalizability of its results: how closely do patients seen in a tertiary-care university clinical environment compare with patients seen in a community setting? however, all f-fdg pet scans were acquired under standard clinical protocols and read by nuclear medicine physicians as stan- dard clinical (nonresearch) studies, after being ordered by referring physicians generally as a “problem-solver,” when they desired more information to help clarify the extent of disease ( ). other possible limitations of the study data deserve men- tion. follow-up for patients after pet averaged y. it is possible that in some patients, disease progression may develop after this period, such that classification of their clinical course as “nonprogressive” is somewhat arbitrary. nevertheless, the lengths of follow-up for iq and oq pa- tients were nearly identical ( � mo and � mo), and this limitation would not affect main conclusions unless progression after follow-up were to occur more frequently in oq patients than in iq patients. that situation would seem unlikely, and even if it were to exist, the main obser- vations would still hold from a time-to-progression perspec- tive. as another possibility, selection bias based on differ- ential availability of clinical information for patients with iq and oq tumors could occur, but again we cannot envi- sion a way in which this could have occurred that would be likely to alter our main findings. similarly, any intergroup differences in clinical parameters about which we have incomplete information, such as distribution of tnm stages or number of prior courses of therapy, could serve as possible confounders. it was not within the scope of this study to consider quantitative information such as the standardized uptake values of pet findings, because many of the scans were obtained before the routine implementation of attenuation correction. several studies, however ( – ), have found f-fdg standardized uptake values to be a probable prog- nostic factor for assessing the response of breast cancer patients to therapy, and the information obtained from such measurements may well be used to complement the loca- tion-based findings of this study. conclusion in summary, f-fdg pet scans of patients with iq primary tumors often reveal a pattern of hypermetabolic foci consistent with isolated extraaxillary metastasis. such patients may particularly stand to benefit from the use of pet to ascertain the actual stage of disease and help ensure that the therapeutic approach is at an appropriate level of aggressiveness. references . american cancer society. cancer facts and figures . atlanta, ga: amer- ican cancer society; . . zucali r, miriani l, marubini e, et al. early breast cancer: evaluation of the prognostic role of the site of the primary tumor. j clin oncol. ; : – . . lohrisch c, jackson j, jones a, et al. relationship between tumor location and relapse in , women with early invasive breast cancer. j clin oncol. ; : – . . hammer j, track c, seewalk dh. breast cancer: the medial tumor location—an unfavorable disease! results from patients ( – ) [abstract]. ra- diother oncol. ; (suppl ): . . gaffney dk, tsodikov a, wiggins cl. diminished survival in patients with inner versus outer quadrant breast cancers. j clin oncol. ; : – . . danforth dn jr, aloj l, carrasquillo ja, et al. the role of f-fdg-pet in the local/regional evaluation of women with breast cancer. breast cancer res treat. ; : – . . eubank wb, mankoff da, takasugi j, et al. fluorodeoxyglucose positron emission tomography to detect mediastinal or internal mammary metastases in breast cancer. j clin oncol. ; : – . . hubner kf, smith gt, thie ja, et al. the potential of f- -fdg pet in breast cancer: detection of primary lesions, axillary lymph node metastases, or distant metastases. clin positron imaging. ; : – . . kim ts, moon wk, lee ds, et al. fluorodeoxyglucose positron emission tomography for detection of recurrent or metastatic breast cancer. world j surg. ; : – . . avril n, rose ca, schelling m, et al. breast imaging with positron emission tomography and fluorine- fluorodeoxyglucose: use and limitations. j clin oncol. ; : – . . dose j, bleckmann c, bachmann s, et al. comparison of fluorodeoxyglucose positron emission tomography and ‘conventional diagnostic procedures’ for the detection of distant metastases in breast cancer patients. nucl med commun. ; : – . . rose c, dose j, avril n. positron emission tomography for the diagnosis of breast cancer. nucl med commun. ; : – . . vranjesevic d, filmont je, meta j, et al. whole-body f-fdg pet and con- ventional imaging for predicting outcome in previously treated breast cancer patients. j nucl med. ; : – . . moon dh, maddahi j, silverman dhs, et al. accuracy of whole-body fluorine- -fdg pet for the detection of recurrent or metastatic breast carcinoma. j nucl med. ; : – . . kumar r, bhargava p, bozkurt mf. positron emission tomography imaging in evaluation of cancer patients. indian j cancer. ; : – . . gopalan d, bomanji jb, costa dc, et al. nuclear medicine in primary breast cancer imaging. clin radiol. ; : – . . czernin j, phelps me. positron emission tomography scanning: current and future applications. ann rev med. ; : – . . wahl rl, siegel ba, coleman re, gatsonis cg. prospective multicenter study of axillary nodal staging by positron emission tomography in breast cancer: a report of the staging breast cancer with pet study group. j clin oncol. ; : – . . guller u, nitzsche eu, schirp u, et al. selective axillary surgery in breast cancer patients based on positron emission tomography with f-fluoro- -deoxy-d- glucose: not yet! breast cancer res treat. ; : – . . van der hoeven jjm, hoekstra os, comans efi, et al. determinants of diag- nostic performance of [f- ]fluorodeoxyglucose positron emission tomography for axillary staging in breast cancer. ann surg. ; : – . . gordis l. epidemiology. nd ed. philadelphia, pa: w.b. saunders co.; : – . . armitage p, berry g. statistical methods in medical research. rd ed. london, u.k.: blackwell; : . . cps innovations web site. pet for predicting breast cancer outcomes: an interview with dr. johannes czernin. available at: http://www.cpspet.com/ healthcare/clinical_perspective.shtml. accessed june , . . kole ac, nieweg oe, pruim j, et al. standardized uptake value and quantifica- tion of metabolism for breast cancer imaging with fdg and l-[ - c]tyrosine pet. j nucl med. ; : – . . noh dy, yun ij, kim js, et al. diagnostic value of positron emission tomog- raphy for detecting breast cancer. world j surg. ; : – . . stafford se, gralow jr, schubert ek, et al. use of serial fdg-pet to measure the response of bone-dominant breast cancer to therapy. acad radiol. ; : – . . weber wa, schwaiger m, avril n. quantitative assessment of tumor metabolism using fdg-pet imaging. nucl med biol. ; : – . pet and inner-quadrant breast cancer • tran et al. by on march , . for personal use only. jnm.snmjournals.org downloaded from http://jnm.snmjournals.org/ http://jnm.snmjournals.org/ microsoft word - dissertation_ .doc is legitimacy contagious? the collective legitimation of alternative therapies in the u.s. hospital industry a dissertation presented to the faculty of the graduate school of cornell university in partial fulfillment of the requirements for the degree of doctor of philosophy by sangchan park august © sangchan park is legitimacy contagious? the collective legitimation of alternative therapies in the u.s. hospital industry sangchan park, ph. d. cornell university this dissertation research examines the rise and spread of alternative medicine in the u.s. health care field. alternative medicine includes a variety of treatment therapies (e.g., acupuncture, therapeutic touch, acupressure, etc.) whose underlying principles rest uneasily with those of dominant mainstream medicine. although their efficacy is still subject to challenge by the medical establishment, these therapies have enjoyed increasing public acceptance in the last two decades, and recently a number of hospitals have begun to incorporate them into their formal structure. in this context, i explore an under-theorized process, the contagion of legitimacy among practices – how the adoption of one or more therapies by a given hospital affects the adoption of other alternative therapies by other hospitals. i suggest that the spread of one practice can be regarded as an informational cue on which potential adopters rely in deciding whether to adopt other associated practices. as long as the informational cue enhances the familiarity and acceptability of new practices, this type of influence may be understood as the process in which the legitimacy of some practices is transferred to other associated practices. as an underpinning process of such association, i focus on categorization which lumps similar practices into a common category and thus creates a common identity for the grouped practices. i argue that a categorical scheme serves as a cognitive basis for association between practices that would otherwise be viewed as disconnected. i empirically examine if the adoption of members of one group of alternative therapies accounts for variation in adoption rates of other therapies which are also in the same group. the findings of analyses strongly support my argument that prior adoptions of alternative therapies by hospitals enhance diffusion rates of other therapies, especially when the therapies present a coherent categorical identity. this study concludes with theoretical implications of the empirical findings and directions for future research. iii biographical sketch sangchan park received his undergraduate degrees in sociology and psychology from yonsei university, south korea in . he continued his studies at the graduate school of yonsei and received a masters of business administration in . after graduation, he spent two years working at the korea development institute. sangchan began his doctoral studies at cornell in , graduating with a ph.d. in industrial and labor relations in . at cornell, he developed his interests in organization theory, entrepreneurship, and strategy. within these general areas, his work focused primarily on the legitimation of non-legitimate ideas and practices, such as alternative medicine, non-tenure systems for faculty appointments, and information withholding by scientists. sangchan recently accepted a position at the national university of singapore as an assistant professor. he is married to jinkyung and has a two year old son, daniel chanhee, and a two week old daughter, julia joohee. iv acknowledgments i would like to thank my dissertation advisor, pamela tolbert, and the rest of my committee members, david strang and wesley sine, for their patience and support. they provided tremendous guidance and encouragement to create a better product. in particular, i owe a special debt to pamela, who not only provided wonderful advice, but also was a constant source of inspiration. a great deal of credit for this work goes to alternative practitioners, hospitals managers, and medical researchers for providing valuable information about the u.s. hospital industry and alternative therapies. i would also like to thank the ewing marion kauffman foundation and cornell university for their generous financial support for this research. my views expressed in this dissertation are not necessarily the views of the ewing marion kauffman foundation. the greatest thanks and apologies go to my wife, jinkyung, for supporting me through the long journey. i am also indebted to my son, daniel chanhee, and my daughter, julia joohee, for teaching me the value of love which this dissertation could never capture and for giving me all the joy and happiness. v table of contents biographical sketch iii acknowledgements iv table of contents v list of figures vii list of tables viii chapter : introduction . overview . chapter outline chapter : context . unifying principles of alternative medicine . different characteristics of specific alternative therapies . historical evolution of alternative medicine . hospitals and the spread of alternative medicine chapter : theoretical background . network-based contagion . limitations of prior research on contagion . category-based contagion chapter : hypotheses . contagion across alternative therapies . categorical positions and contagion . relational positions and contagion vi chapter : methods . sample . theoretical scope and empirical setting . analytic procedure . measurement of variables and data sources chapter : results . categorical positions and contagion . relational positions and contagion . additional analysis chapter : discussion and conclusion . recapitulation of research . limitations . implications and directions for future research appendix . cross-sectional time-series logit analysis: adoption of therapeutic touch appendix . cross-sectional time-series logit analysis: adoption of acupressure references vii list of figures figure . categories of alternative therapies figure . number of articles on alternative medicine figure . percent of hospitals offering alternative medicine figure . geographic distribution of hospitals offering alternative therapies in figure . percent of alternative medicine offerings by therapy type figure . number of conventional and alternative medical practitioners figure . closeness centrality of alternative therapies, - figure . measuring prior adoptions (focal therapy: acupuncture) viii list of tables table . definitions of selected alternative therapies table . categories of alternative therapies table . closeness between alternative therapies, - table . closeness scores by subgroups of alternative therapies table . variables and their measures table . number of hospitals that adopted alternative therapies by year table . descriptive statistics: means, standard deviations, and correlations table . cross-sectional time-series logit analysis: adoption of acupuncture table . cross-sectional time-series logit analysis: adoption of acupressure table . cross-sectional time-series logit analysis: adoption of acupuncture—relational characteristics hypotheses table . comparisons across acupuncture, therapeutic touch, and acupressure table . cross-sectional time-series logit analysis: adoption of magnetic resonance imaging (mri), - table . cross-sectional time-series logit analysis: alternative variables for categorical characteristics table . cross-sectional time-series logit analysis: alternative variables for relational characteristics table . different approaches to the study of adoption chapter introduction . overview researchers from various disciplines have long investigated the spread of new ideas and practices in populations of individuals and organizations. in this view, the diffusion processes are shaped not only by individual attributes of adopters, but by linkages between members of the population who have and have not yet adopted innovations (karshenas and stoneman ; rogers ; strang and soule ). research has often regarded diffusion through linkages as contagion in which adoption decisions of potential adopters are driven by their exposure to prior adopters especially when decisions are made in highly ambiguous contexts. this concept of contagion has been illustrated by a variety of studies, including the diffusion of technical innovations, such as hybrid corn, telephones, and prescription drugs (ryan and gross ; coleman, katz, and menzel ; rogers ), and the spread of formal structures and management practices across organizations, such as civil service reform, multidivisional forms, poison pills, and audit firm defections (tolbert and zucker ; fligstein ; davis ; jensen ). stated generally, these studies provide relational models which posit that contagion occurs between prior and potential adopters embedded in social linkages. my dissertation research extends the concept of contagion to explain whether and how the acceptance of some non-legitimate practices by a set of actors influences the adoption of similar practices by other actors. this is a significant departure from previous research on diffusion, which has almost exclusively focused on the introduction and spread of a single practice. in my research, contagion is not simply understood as a relational source of diffusion of a single practice; it is a process in which some practices accepted by prior adopters infect other non-legitimate practices such that the diffusion of some practices increases the likelihood of other associated practices being accepted by potential adopters. put differently, prior adoptions of a practice are not only relevant to the spread of the same practice, but they are also relevant because they can affect some potential adopter’s perceptions of other associated practices. insofar as an accepted practice a positively affects perceptions of the other practice b, b is more likely to be adopted. raised to a level of symbolic abstraction, this involves contagion in which a infects b. central to this process is the question of whether and how association occurs between multiple practices. as an underpinning process of such association, i focus on categorization which lumps similar practices into a distinct category. in particular, i emphasize one consequence of such categorization—the construction of shared understandings about similarities among categorized practices (rosch ; barsalou ; lounsbury and rao ). these similarities may serve as a cognitive basis for association between practices that would otherwise be viewed as disconnected (strang and meyer ; hamilton ). given the presence of association, the adoption of one practice is likely to become an informational cue on which potential adopters rely in deciding whether to adopt other associated practices. especially when adoption decisions are made in the context where a new practice involves high uncertainty but no direct social cues are available due to the absence of prior adopters of the same practice, those who adopted associated practices can be regarded as alternative sources of social cues that guide potential adopters under uncertainty. moreover, as long as the informational cues enhance the familiarity and acceptability of new practices, this type of contagion may also be understood as the process in which the legitimacy of some practices is transferred to other practices in the same category (zucker ; dobrev, ozdemir and teo ). using the emerging niche of alternative medicine in the conventional healthcare field as an empirical setting, i ask if a categorical group of alternative therapies already adopted by hospitals account for differences in adoption rates of other alternative therapies in the same category. alternative medicine affords a useful context in which to examine my theoretical arguments. first of all, alternative medicine includes a wide range of multiple medical practices, such as acupuncture, therapeutic touch, acupressure, and others whose underlying principles rest uneasily with those of dominant mainstream medicine. moreover, these therapies entail higher uncertainty in part because conclusive biomedical evidence for their therapeutic efficacy is not available yet. most importantly, there exists a formal categorization scheme that provides perceptions of similarity and association between diverse alternative therapies, as shown in figure . . table . provides brief descriptions of the nine therapies in the categorical scheme. source: adapted from workshop on alternative medicine . figure . categories of alternative therapies alternative medicine alternative systems of medical practice homeopathy acupuncture reflexology chiropractic massage therapies naturopathy tai chi/qi gong therapeutic touch acupressure manual healing methods table . definitions of selected alternative therapies definition specific therapies acupuncture a family of procedures involving stimulation of anatomical points on the body by a variety of techniques. the acupuncture technique that has been most studied scientifically involves penetrating the skin with thin, solid, metallic needles that are manipulated by the hands or by electrical stimulation. acupressure acupressure involves placing physical pressure by hand, elbow, or with the aid of various devices on different energy points on the surface of the body. chiropractic chiropractic medicine focuses on the relationship between bodily structure (primarily that of the spine) and function, and how that relationship affects the preservation and restoration of health. homeopathy small, highly diluted quantities of medicinal substances are given to reduce or eliminate symptoms. this therapy is based on the principle that a substance that can cause certain symptoms when given to a healthy person can cure those same symptoms in someone who is sick. massage therapies massage therapists manipulate muscle and connective tissue to enhance function of those tissues and promote relaxation and well-being. naturopathy practitioners work with the patient with a goal of supporting a healing power in the body that establishes, maintains, and restores health, through treatments such as nutrition and lifestyle counseling, dietary supplements, medicinal plants, exercise, homeopathy, and treatments from traditional chinese medicine. reflexology reflexology therapists use finger pressure on specific zones on the feet that are believed to affect specific organs. tai chi/qi gong taichi is a noncompetitive, self-paced system of gentle physical exercise, involving a series of postures or movements in a slow manner. qi gong combines movement, meditation, and regulation of breathing to enhance the flow of qi, or vital energy in the body. therapeutic touch therapeutic touch is based on the premise that it is the healing force of the therapist that affects the patient's recovery; healing is promoted when the body's energies are in balance; and, by passing their hands over the patient, healers can identify energy imbalances. according to the scheme, the term “alternative medicine” per se represents a distinct category of medical treatments that broadly applies to a collection of disparate alternative therapies. within this broad category, there are a series of subcategories, each of which includes a number of specific therapies. for instance, the subcategory of manual healing methods consists of diverse therapies such as chiropractic, reflexology, and therapeutic touch, among others. note that the categories are not always mutually exclusive (e.g., acupressure, massage therapies and tai chi/qi gong). as shown in figure . , this study focuses on two subcategories – alternative systems of medical practice and manual healing methods, and nine of the member therapies. the categorization scheme was first proposed in by both alternative practitioners and conventional medical professionals who participated in the first conference on alternative medicine sponsored by the national institute of health (nih), and was then officially adopted by the office of alternative medicine (oam), a government agency within the nih. the oam used the proposed categories when providing funding to universities and individual researchers and documenting fact sheets, thereby making the categorization scheme widely available. for instance, this scheme has been used by nationwide surveys (e.g., barnes et al. ), government reports (e.g., whccam ), clinical trials (www.clinicaltrials.gov), and popular journals and newspapers. insofar as the categorization scheme provides the shared understanding that multiple practices belong to a common category of “alternative medicine,” the therapies will likely be perceived as similar and associated with each other. the perceptions of similarity and association serve as a critical condition that makes a focal hospital sensitive to the spread of other associated practices. my main argument is that given the perceived similarity and association, prior adoptions of individual therapies may enhance diffusion rates of other associated therapies. take acupuncture as an example. as prior research on diffusion suggests, a focal hospital’s adoption of acupuncture may be driven, in part, by prior adoptions of the same practice – i.e., the number of other hospitals that already adopted acupuncture. however, my research significantly departs from the traditional approach by suggesting that prior adoptions of other practices (other than acupuncture) by other hospitals may have an impact on a focal hospital’s adoption of acupuncture when the focal hospital attends to the spread of other associated therapies in the same category to guide its adoption behavior. it is worth noting that alternative therapies may not have the same chance of affecting and being affected by one another. consideration of this possibility in turn gives rise to other hypotheses regarding factors that explain differential influences that some alternative therapies may have on adoption rates of other therapies. in particular, i examine two general factors: categorical characteristics of therapies that are subject to adoption by hospitals and relational characteristics of hospitals that adopt therapies. categorical characteristics of therapies refer to unique positions of individual therapies relative to other therapies in the categorization scheme as shown in figure . . i focus on two key characteristics: categorical similarity and ambiguity. therapies are regarded as more similar when they are in the same subcategories, whereas therapies lie in an ambiguous categorical position if they are members of more than one subcategory. for instance, acupuncture is more similar to homeopathy than to chiropractic, since acupuncture and homeopathy are located in the same subcategory. acupressure, massage therapies and tai chi/qi gong are categorically similar to acupuncture, but categorically ambiguous since they are organized into two subcategories simultaneously (see figure . ). i argue that these categorical characteristics of alternative therapies may account for differences in adoption rates. specifically i ask ( ) if prior adoptions of therapies that are part of the same subcategory as a focal therapy are more predictive of the adoption of the focal therapy by a potential adopter (categorical similarity) and ( ) if prior adoptions of therapies that are members of more than one subcategory have a weaker effect on the adoption of the focal therapy by a potential adopter (categorical ambiguity). by relational characteristics of hospitals, i mean unique positions of individual hospitals relative to other hospitals in the social linkages. i concentrate on three relational properties: network ties, structural equivalence, and status. the thrust of prior research on social contagion between prior and potential adopters is that the behavior of potential adopters is driven by their exposure to prior adopters and that such exposure is largely shaped by social structural positions of prior and potential adopters. drawing on this argument, i suggest that if a focal hospital is exposed to other hospitals that adopted one therapy (for instance, chiropractic) through relational linkages, the focal hospital attends to the spread of other associated therapies (such as therapeutic touch) in the same category. this is not to reiterate the traditional argument that prior adoptions of chiropractic lead to additional adoptions of chiropractic; instead, it is to emphasize that relational linkages of hospitals can increase the awareness of chiropractic, which eventually influences the adoption of therapeutic touch on the basis of categorical association. i empirically examine if other therapies are influential for the adoption of a focal therapy ( ) when prior adopters of other therapies have network ties to potential adopters of the focal therapy, ( ) when prior and potential adopters are structurally equivalent, and ( ) when prior adopters are high-status hospitals. . chapter outline in chapter , i describe the empirical context of this research in more detail, answering questions such as: what is alternative medicine’s general approach to treatment and how is it different from conventional care (section . )? how are specific alternative therapies different from each other (section . )? how has alternative medicine historically evolved and what affected the evolution (section . )? finally, how are hospitals – the main focus of this research – situated in the recent acceptance of alternative medicine and other broader changes in the health care field (section . )? in chapter , i develop a theory of contagion across multiple practices to explain how the diffusion of some practices influences the diffusion of other practices. i begin by providing an introductory discussion of prior work on contagion between actors (section . ). i then discuss the limitations of the prior research in its ability to explain the diffusion patterns in my empirical setting and many other emerging market niches (section . ). this provides a theoretical justification for a new approach fully detailed in the remaining two sections of chapter . in section . , i examine categorization as a general condition under which contagion across practices can emerge. in section . , i further present causal mechanisms for the contagion process. the chapter concludes with a general proposition: given the presence of perceived association between practices, the diffusion of some practices increases the likelihood of other practices being accepted by potential adopters. these general theoretical accounts for contagion across practices are followed by specific hypotheses in chapter . in section . , i present hypotheses that examine the formal incorporation of alternative therapies into hospitals’ array of conventional treatment services. i focus on nine of the most widely used alternative therapies, as shown in figure . , and ask if prior adoptions of eight alternative therapies already adopted by hospitals increase adoption rates of the other alternative therapy. since alternative therapies are unlikely to have the same chance of affecting and being affected by one another, i also develop other hypotheses regarding factors that explain differential influences that alternative therapies may have on adoption rates of other therapies. the first set of hypotheses focuses on categorical characteristics of therapies (section . ), while the second set of hypotheses primarily relates to relational characteristics of hospitals (section . ). in chapter , i describe sample (section . ), empirical setting (section . ), analytic procedures (section . ), and measurement of variables and data sources (section . ). chapter provides my empirical findings. for simplicity, i concentrate on the adoption of acupuncture as a focal therapy when i report results of various analyses, including categorical characteristics hypotheses (section . ) and relational characteristics hypotheses (section . ). in section . , i report results of additional analyses to show comparisons across therapies, such as acupuncture, therapeutic touch, and acupressure – the three therapies that represent three different categorical positions in figure . . the section also provides other results of analyses to show whether contagion across practices operates even among conventional therapies and whether the main results reported in sections . and . are robust. chapter summarizes this research (section . ), discusses alternative explanations and generalization issues (section . ), and provides the implications of this research and directions for future research (section . ). chapter context a short history of medicine (author unknown) i have an earache. b.c. here, eat this root. a.d. that root is heathen. here, say this prayer. a.d. that prayer is superstition. here, drink this potion. a.d. that potion is snake oil. here, swallow this pill. a.d. that pill is ineffective. here, take this antibiotic. a.d. that antibiotic is artificial. here, eat this root. this dissertation is a timely exploration into the emerging industry niche of alternative medicine in the united states. the most widely cited national study of alternative medicine’s magnitude (eisenberg et al. ) estimated that there were million visits to alternative medicine practitioners in . total out-of-pocket expenditures relating to alternative therapies were estimated at $ billion – more than those for all u.s. physician services. according to various estimates, americans are currently spending more than $ billion on dietary supplements alone (ruggie ). alternative medicine is not a name of a specific medical therapy but an there have been a number of national surveys whose results are different. in a survey by astin ( ), % of the respondents used alternative medicine. a landmark healthcare inc. ( ) survey found that % of respondents used alternative medicine. a secondary analysis of the medical expenditure panel survey (n= , ) found that only % of the population used alternative medicine. the last survey gave respondents a list of alternative therapies, whereas the eisenberg et al. ( , ) and astin ( ) surveys gave them a list of therapies. because the eisenberg et al. and astin surveys included megavitamins, commercial diet, and lifestyle diet, they have been criticized for overestimating unconventional use. recently the most comprehensive findings on americans’ use of alternative medicine were released in may by the national center for complementary and alternative medicine (nccam) and the national center for health statistics (nchs, part of the centers for disease control and prevention) (barnes et al. ). according to this survey, % of adults are using some form of cam. when megavitamin therapy and prayer specifically for health reasons are included in the definition of cam, that number rises to %. these statistics came from the edition of the nchs's national health interview survey (nhis), an annual study in which tens of thousands of americans are interviewed about their health- and illness-related experiences. it was completed by , adults aged years or older from the u.s. civilian population. umbrella term given to a collection of multiple medical practices, such as acupuncture, chiropractic, homeopathy, naturopathy, and herbal remedies, among many others. as acknowledged by the term “alternative,” these therapies are often argued to embody a number of techniques and perspectives that do not conform to the conventional western standards of biomedicine and potentially challenge the commonly assumed viewpoints of dominant professionalized systems of the u.s. healthcare (eisenberg et al. ; winnick ). indeed, alternative medical practices are typically referred to as those that are not widely accepted by the dominant medical establishment, such as hospitals or medical schools. for instance, the national center for complementary and alternative medicine (formerly the office of alternative medicine), the federal government’s lead agency for scientific research on alternative medicine, defines alternative medicine as: a group of diverse medical and health care systems, practices, and products that are not presently regarded as part of conventional medicine, practiced by holders of m.d. (medical doctor) or d.o. (doctor of osteopathy) degrees and by their allied health professionals, such as physical therapists, psychologists, and registered nurses (nccam, retrieved on april , from http://nccam.nih.gov/health/). this definition implies that alternative medicine is defined by its residual nature. a natural consequence is then a high level of heterogeneity among alternative therapies. therefore, the use of an umbrella term may gloss over the diversity of specific alternative therapies and may not reflect the substantial difference that exists among a wide array of practices. “[s]ome of the practices are so different that one risks committing a fundamental error by lumping them all under the same rubric” (ruggie : ). despite the risk associated with the use of an umbrella term, alternative medicine has been widely used as a representative name for multiple therapies for the last two decades. figure . presents the count of a term, “alternative medicine,” used by popular news articles and medical research journals between and . i used lexisnexis® academic and medline, respectively. lexisnexis® academic provides access to full text resources on topics including current and general news searchable online. medline covers over all major journals in all areas of medicine, to the present. the figure shows that the term, “alternative medicine,” is relatively a new invention; it was not widely employed by popular news articles and medical journals in the - ’s, but has rapidly gained public and academic acceptance since the early ’s. number of news articles (lexisnexis) number of medical journal articles (medline) figure . number of articles on alternative medicine acknowledging the diversity of procedures classified as alternative medicine, i first describe common characteristics and logics that differentiate many alternative therapies from the mainstream biomedical medicine, such as the healing power of nature, holism, balance, and energy (section . ). i then provide a more nuanced description of alternative therapies by explaining how specific therapies are substantially different in terms of historical origins, actual delivery of treatments, diagnostic procedures, clinical evidence, and legal status (section . ). in section . , i describe the history of alternative medicine. i begin with the nineteenth century when the health and healing landscape was characterized by a diversity of healing traditions and practices, and then move to the mid- th century when the health landscape with multiple healing traditions began to change. in particular i concentrate on the role of american medical association (ama) in the establishment of exclusive jurisdictional boundaries. the ama often adopted labels such as irregular and quackery to ostracize competing practices and practitioners (whorton ). the capability to define what is regular and culturally sanctioned as normative is a profound power, indicating professional dominance. i also emphasize the release of a report by abraham flexner in , because the flexner report was not only a manifesto to reform and consolidate the medical profession but also an important force that pushed alternative therapies to the margins of american healthcare field. if alternative medicine was delegitimized as stereotypical quackery and marginalized, then how can we explain the impressive change from limited use of alternative medicine to the rapid dissemination and public popularity? i draw on extant lines of research to suggest multiple explanations, including the widespread interest in counterculture that emerged in the s (berliner and salmon ; whorton ), the inability of conventional medicine to cure chronic illness (e.g.,spencer and jacobs ; bloom et al. ), the professionalization of alternative practitioners and the decrease in organized power of conventional medical professions (e.g., scott et al. ; c.f., abbott ; welsh et al ; wailoo et al. ), and the increasing role of major market actors, such as pharmaceutical manufacturers, managed care organizations, insurance firms, the media, and government agencies (goldstein ). finally, section . examines how hospitals are situated in the recent acceptance of alternative medicine and other broader changes in the healthcare field. drawing upon the data collected by the american hospital association, i first examine general trends in the spread of alternative therapies among hospitals. i then summarize results of interviews and observations that i conducted to understand sources of increased acceptance by hospitals and conditions that affect adoption decisions made by hospitals. . unifying principles of alternative medicine most alternative therapies are argued to share the overarching belief that humans have built-in recuperative powers (dossey and swyers ; whorton ; ruggie ). this is often referred to as vis medicatrix naturae – the healing power of nature – the latin phrase that has been used for centuries to signify the inborn ability of the human body to respond to the insult of illness or injury and restore itself to health in most episodes of disease or trauma (whorton ). according to this view, the most appropriate foundation of medical practices lies in the natural healing process and thus therapies should focus on stimulating the patient’s internal ability to recover (dossey and swyers ). whorton ( ) succinctly describes the emphasis of alternative medicine on self-healing as “hippocratic heresy” (p. ). for conventional doctors, hippocrates is the father of medicine; for alternative medicine’s heretics, hippocrates is more important for his advocacy that echoes alternative medicine’s worldview – e.g., trust in the sick person’s power to recover, without aggressive medication, and avoidance of treatments that might inhibit the vis medicatrix. in general, alternative therapists claim that their approaches better reflect hippocratic injunction – i.e., first do no harm, since they emphasize prevention rather than intervention, rely on the least harmful treatments, and tend to avoid suppressing symptoms which are understood as a manifestation of a more profound underlying cause of problems that must be addressed (dossey and swyers ; whorton ). other unifying principles shared by most alternative therapies include holism, balance, and energy (workshop on alternative medicine : xxxix-xl; whccamp : ii ). holism is the principle that all aspects of the person are interrelated and must be addressed in treatment, not just the specific disease or specific body part that is affected. the principle of balance refers to harmony among organ systems in the body and between the body and its environments. imbalance in any of the systems is understood to affect other part of the systems. thus, alternative practitioners often suggest that to achieve balance, energy must be equalized between the imbalanced parts (dossey and swyers ). for instance, in traditional chinese medicine, an organ is imbalanced when it is too yang or too yin. to restore harmony among the organs, qi (the chinese term for energy) must be transferred from the yang organ to the yin organ, and the balance can then extend into physical and mental aspects of the person (kaptchuk, ). in addition to the differences in philosophical underpinnings and types of therapies offered by conventional and alternative medicine, there are also other differences in how therapies are administered and how the practitioners and patients interact. for instance, conventional medical practitioners tend to provide standardized treatments and medical advice based on a number of broadly defined symptomatic categories. in this view, the physician is the authoritative expert and the patient is a passive participant, indicating physician-centered interactions (whccamp ). in contrast, alternative medical practitioners claim that they view each patient as unique and therefore provide individualized treatment to fully address patient needs (goldstein , ), emphasizing a patient-centered relationship. it is worth noting that some differences between conventional and alternative medicine could be a matter of emphasis, although there are substantial differences in historical origins and philosophical underpinnings (whccamp ). as conventional medicine developed effective treatments for many of the infections and severe injuries based on biomedical and technological advances, prevention and wellness promotion through diet, foods, and life styles have been underemphasized (e.g., cooksey et al ; adams et al ). in contrast, alternative practitioners have come to be identified with self-care, relaxation, exercise, diet, and nutrition, possibly reflecting the lack of effective treatments for the types of disease and illness treated by conventional health care. . different characteristics of specific alternative therapies table . lists a variety of therapies and remedies identified as alternative medicine by participants at the first conference on alternative medicine in , known as the chantilly conference. a diverse group of conventional and non- conventional medical researchers and practitioners were invited to the conference, where they elaborated the definition of alternative medicine and clarified the similarity and difference between alternative therapies. this conference provided a basis for categorizing alternative therapies into seven subcategories, often referred to as “fields of practice” (workshop on alternative medicine ): alternative systems of medical practice, manual healing methods, mind-body interventions, herbal medicine, bioelectromagnetics, pharmacological and biological treatments, and diet and nutrition in the prevention and treatment of chronic disease. table . categories of alternative therapies subcategories examples of specific therapies alternative systems of medical practice traditional oriental medicine (acupuncture, acupressure, massage, qigong, herbal medicine), ayurvedic medicine, homeopathy, anthroposophy, naturopathy, and environmental medicine, native american indian medical systems (sweating and purging, herbal remedies, shamanic healing, and singing), latin american practices (a humoral model for classifying activity, food, and drugs, and a series of folk illnesses), alcoholics anonymous, and other popular health care from informal sources manual healing methods osteopathic medicine, chiropractic medicine, massage therapy, reflexology, acupressure, alexander technique, feldenkrais method, trager psychosocial integration, and structural integration, healing touch, huna (traditional hawaiian), mari-el, natural healing, qigong, reiki, specific human energy nexus (shen) therapy, and therapeutic touch, applied kinesiology, network chiropractic spinal analysis, polarity therapy, qigong longevity exercises, and craniosacral therapy mind-body interventions support groups, meditation, imagery, hypnosis, biofeedback, yoga, dance therapy, music/art therapy, and prayer and mental healing bioelectromagnetics use of nonthermal, nonionizing electromagnetics for bone repair, nerve stimulation, wound healing, and treatment of osteoarthritis. pharmacological and biological treatments antineoplastons, cartilage products, ethylene dialing tetraacetic acid (edta) chelation therapy, ozone, immunoaugmentative therapy, i -x, hoxsey method, essiac, coley's toxins, mth- , neural therapy, apitherapy herbal medicine ginkgo, ginseng, menthol, mint, horehound, camphor, eucalyptus diet and nutrition vitamins, nutritional supplements, alternative dietary lifestyles (e.g., vegetarian diets) source: workshop on alternative medicine. . alternative medicine: expanding medical horizons. a report to national institute of health on alternative systems and practices in the united states. washington, dc: u.s. government printing office. the presence of fields of practice within the overarching category of alternative medicine implies that specific therapies are different across their subcategories. to further exemplify substantial differences within alternative medicine, i concentrate on two fields of practice – alternative systems of medical practice and manual healing methods. the first subcategory, alternative systems of medical practice, broadly refers to self-care according to folk principles and care given in an organized health care system based on an alternative tradition, such as traditional oriental medicine (workshop on alternative medicine ). among the nine therapies shown in figure . , acupuncture, acupressure, homeopathy, massage, naturopathy, and taichi/qigong are categorized into the subcategory of alternative systems of medical practice field of practice. the second subcategory, manual healing methods, includes therapies that focus on manipulating soft tissues or realigning body parts. this approach is based on the claim that the dysfunction of bodies can be resolved by correcting misalignments and manipulating soft tissues (workshop on alternative medicine ). chiropractic, reflexology, therapeutic touch, acupressure, massage, and taichi/qigong are organized into the subcategory of manual healing methods. it is notable that the analytic basis of seven subcategories is not clear (ruggie ). the chantilly conference participants did not specify how they categorized alternative therapies to distinguish fields of practice. rather it seems that they simply drew on existing categories that they identified as “traditional.” according to the committee that organized the conference, “traditionally, alternative medical disciplines often have been divided into four categories,” which include mind-body, diet and nutrition, biologics and pharmacologics, and manual healing (workshop on alternative medicine : xlvi). it appears that these categories are based on the major techniques and types of treatment employed by practitioners. for example, the mind-body category includes practitioners who use psychological techniques such as mental imaging, whereas therapists in the manual healing category typically draw on physical forces. later, the committee decided to deviate from the traditional scheme by adding two new sub-categories, alternative systems of medicine and herbal medicine, without presenting any justification. one speculation about the underlying rationale for the new sub-category of alternative systems is that therapies in the category may involve specific ethnic groups (e.g., ayurvedic medicine and india). yet there are some analytical problems with the categories. for instance, acupuncture and herb are typically used together within the traditional oriental medicine, but they are categorized into different subcategories. moreover, alternative systems of medical practices include some therapies already grouped in other subcategories. for example, acupressure, massage, and taichi/qigong are organized into two subcategories simultaneously. a criterion that good typologies must meet to be adequate for classification purposes is whether categories are mutually exclusive. since some therapies fit into more than one category, the categorical scheme violates this criterion. the analytic problems of proposed categories provide additional evidence for how difficult it is to grasp similarities and differences among very different alternative therapies. below i describe the nine therapies within two fields of practice to show how they are different in terms of historical origins, actual delivery of treatments, diagnostic procedures, clinical evidence, and legal status. acupuncture: originated from ancient chinese medicine, acupuncture involves stimulating specific anatomic points in the body as a way of regulating the flow of qi. according to traditional chinese medicine, an internal imbalance of the body leads to blockage in the flow of qi and ultimately causes disease. qi can be unblocked by using acupuncture at certain points on the body. puncturing the skin with fine needles is the usual method, but practitioners also use heat or suction. a series of controlled studies has shown compelling evidence for the efficacy of acupuncture in the treatment of a variety of conditions, including osteoarthritis, chemotherapy-induced nausea, asthma, back-pain, and migraine headaches (birch et al ). although acupuncture was initially introduced to some practitioners on the east coast of the united states by the late th century (lytle ), it became better known in , when new york times reporter james reston published a front-page account of how doctors in china used needles to ease his pain after surgery, along with other cures by chinese acupuncturists. the first practice act legislation for acupuncture was enacted in in maryland, nevada and oregon, and as of , forty three states have enacted practice acts. there were an estimated , acupuncture practitioners in (cohen ). among schools of acupuncture, are accredited by accreditation commission for acupuncture and oriental medicine (acaaom) as of . the national certification commission for acupuncture and oriental medicine (nccaom) offers certification programs. the national health interview survey, the most comprehensive survey of acupuncture use by american adults to date, estimated that about eight million adults had ever used acupuncture. acupressure: developed in japan in the early s, acupressure includes four several methods, including shiatsu, tsubo, jin shin jyutsu, and jin shin do, all of which use the fingers, not needles, to manipulate the oriental meridian points (rubik and pavek ). based on traditional oriental medical theory, acupressure practitioners argue that their hands-on methods of stimulating the acupressure points can strengthen weaknesses, relieve common ailments, prevent health disorders and restore the body’s vital life force (teeguarden ). clinical evidence has been reported that acupressure improved a range of conditions, such as nausea, headache, depression, and circulatory problems (rubik and pavek ). acupressure is not licensed anywhere in the u.s., but this practice can be practiced by massage therapists, physical therapists, nurses, and doctors. currently a national certification program is administered by the nccaom. therapeutic touch: developed in the s, therapeutic touch was initially provided by a group of registered nurses as part of general nursing care (rubik and pavek ). therapeutic touch practitioners claim that their therapies assist the natural healing process by redirecting and rebalancing the energy fields within the body (rosa et al. ). a practitioner places his or her hands on or close to the body of the patient and redistributes the patient’s energy or transmits his or her own energy as appropriate. there is mixed evidence on its efficacy. some studies support effects of therapeutic touch on conditions such as tension headache reduction (keller and bzdek, ), while other studies suggest that the claim of therapeutic touch is groundless (rosa et al. ). although the word “touch” is part of the modality’s name, physical touch is not necessary when practitioners offer a treatment. there is no formal licensing or certifying process for therapeutic touch to date. chiropractic: founded in the s by daniel david palmer and advanced by palmer’s son bartlett joshua, chiropractic medicine has involved the fiercest political contestation against conventional medicine (winnick ). a wilk et al. v. the american medical association vividly shows such a political interaction (wardwell ). in , five chiropractors brought a civil anti-trust suit arguing that the ama had attempted to intentionally harm and eliminate chiropractic as a profession. in , a federal judge found that the ama and its affiliated organizations had rosa et al. ( ) examined the claim of practitioners of therapeutic touch that they can treat many medical conditions by using their hands to manipulate a “human energy field.” to investigate whether therapeutic touch practitioners could reliably detect a human energy field, they designed a study in which twenty-one practitioners were tested under blinded conditions to determine whether they could correctly identify which of their hands was closest to the investigator’s hand. the results showed that the practitioners had succeeded in identifying her hand at a rate not significantly different from chance. conspired to harm the chiropractic profession and thus ruled that they had violated the sherman anti-trust act. the ama was ordered to cease and desist its hostile policies against chiropractors. chiropractic medicine views biomechanical structures, in particular the spine, as basic to health. specifically, chiropractic practice emphasizes that the presence of joint dysfunction and subluxation may interfere with the ability to act efficiently and may lead to disease (kaptchuk, ). chiropractors typically rely on hands-on procedures to determine dysfunctions, and emphasize spinal manipulation as a major type of treatment. much research has provided compelling evidence on the effectiveness of chiropractic treatment, in particular for low back pain (dossey and swyers ). first licensed in by illinois, chiropractors had achieved licensing in all states and congress allowed medicaid/medicare reimbursement in the early s (wardwell ). formal education institutes for chiropractors first obtained accreditation from the u.s. office of education in . there are now chiropractic institutions accredited by the council on chiropractic education, and an estimated , chiropractors in the u.s. (bureau of labor statistics ). the american chiropractic association (aca), founded in , is the largest professional association representing more than , doctors of chiropractic. homeopathy: homeopathic medicine focuses on remedies made from naturally occurring plant, animal, or mineral substances to stimulate autoregulatory and self- healing processes (kaufman ). the term homeopathy is derived from the greek words homeo (similar) and pathos (suffering from disease) (whorton ). the german physician samuel hahnemann formulated in the late s the first basic principles of homeopathy such as “like cures like,” which indicates that a substance that can cause certain symptoms when given to a healthy person can cure those same symptoms in the sick person (kaufman ). following the principle, homeopathy uses small doses of various substances by matching a patient’s symptoms with symptoms produced by these substances. recent clinical trials suggest that homeopathic medicine has a positive effect on allergies, childhood diarrhea, and influenza (jonas et al. ). currently there are three states that license homeopaths who are also physicians: arizona, connecticut and nevada. however, some states include homeopathy within the scope of practice of professions such as chiropractic, naturopathy, and physical therapy. there are four schools for homeopathy accredited by council on homeopathic education. the council for homeopathic certification (chc) provides a national certification program. massage: references to massage are found in chinese medical texts , years old, and modern massage therapy was introduced in the united states in the s by two physicians who had studied in sweden (rubik and pavek ). massage therapy emphasizes the importance of touch as the fundamental medium for manipulating soft body tissues to return those tissues to their normal state. massage consists of a group of manual techniques that include applying fixed or movable pressure and holding and causing the body to move (kaptchuk, ). primarily the hands are used, but sometimes forearms, elbows, and feet are used as well. these techniques can affect the musculoskeletal, circulatory-lymphatic, and nervous systems (lafferty et al. ). massage therapies are currently licensed by states. a national certification program accredited by the national commission for certifying agencies was inaugurated in , and a national accreditation program for massage education (the commission on massage therapy accreditation, comta) was set up in . there are more than massage schools, but only approximately schools are accredited by the comta. the number of massage therapists has increased from approximately , in to more than , in (american massage therapy association ). the primary sponsor of the national certification and accreditation programs is the american massage therapy association (amta). naturopathy: founded as a formal health care system at the turn of the century, naturopathic medicine is a school of medical philosophy and practice that seeks to improve health and treat disease chiefly by assisting the body’s innate capacity to recover from illness and injury (whorton ). this practice may include a broad array of different modalities, including herbalism, aromatherapy, and nutritional counseling. naturopathic physicians are also trained in conventional medical disciplines including anatomy, cell biology, nutrition, among others, and cooperate with other medical professionals, referring patients to allopathic medical doctors (workshop on alternative medicine ). an estimate based on data from licensing bodies indicated that in approximately , licensed naturopathic physicians were practicing in the u.s. (boon et al. ). there are four accredited naturopathic medical schools. reflexology: this practice was introduced into the u.s. in by william h. fitzgerald, and further developed by eunice d. ingham in the s who mapped the entire body into reflexes on the feet (rubik and pavek ). unlike other pressure point therapies such as acupressure that use finger pressure on the meridian points, reflexology focuses on other neurological release points on the feet and hands. reflexologists apply pressure using their thumbs and fingers on these points of the feet and hands. a national certification program has been offered by the american reflexology certification board (arcb) since . as of , only two states currently have reflexology laws at the state level: north dakota (licensing law) and tennessee (registration law). many other states have massage laws, which may or may not have an exemption for reflexology. taichi/qigong: originated from china in the early th century, taichi is a noncompetitive, self-paced system of gentle physical exercise, involving a series of postures or movements in a slow manner (chu ). taichi’s health training concentrates on relieving the physical effects of stress on the body and mind. this practice also focuses on meditation and subsequent calmness as a necessary basis to maintain optimum health in the sense of effectively maintaining stress relief. qigong is a component of traditional chinese medicine that combines movement, meditation, and regulation of breathing to enhance the flow of qi in the body, improve blood circulation, and enhance immune function (chu ). there is no statewide or national oversight of the credentialing process of qigong. . historical evolution of alternative medicine the presence of multiple healing practices is not new. in the nineteenth century, the health and healing landscape was characterized by a diversity of healing traditions and practices, many of which have been popularized again in recent years. allopathy, homeopathy, naturopathy, chiropractic, osteopathy, and other folk remedies from african, native american, and immigrant traditions provided the vast majority of primary medical care throughout most of the ’s (starr ; whorton ). accordingly there was fierce competition among groups of practitioners who often had to distinguish themselves from others in such a way as to gain professional advantages – the process often referred to as boundary work (gieryn ). this is vividly exemplified by the historical use of the word “allopathy” – meaning “other than the disease.” this term was first introduced about two hundred years ago by samuel hahnemann, the founder of homeopathy, who was critical about the use of calomel, bleeding, purging, and other heroic treatments that many physicians at that time relied on (kaufman ). he originally intended to indicate that unlike homeopathic medicine, allopathic medicine used methods that were unrelated to the disharmony produced by disease and harmful to their patients. this term was then employed by other alternative therapists and considered highly offensive by those at whom it was directed, although it is now used without explicitly negative connotation (whorton ). the health landscape with multiple healing traditions and practices began to change in the mid- th century, when conventional medical professionals also engaged in boundary work. their boundary work became particularly effective after the founding of their powerful professional association, the american medical association (ama) in . the ama often adopted labels such as irregular and quackery to ostracize competing practices and practitioners (whorton ). the capability to define what is regular and culturally sanctioned as normative is a profound power, indicating the establishment of exclusive jurisdictional boundaries and subsequent professional dominance (larson; ; abbott ; ruggie ). sources of the power included not only the development and validation of the germ theory and other scientific advances in surgery, but also a major revolution in medical education that helped medicine to systematically build a distinct body of formal knowledge, dismiss competing practices and treatment as unscientific, and thereby evolve into the dominant health care system (berlant, ; starr, ; abbott, ; freidson ). in particular, the revolution in medical education advanced with the release of a report by abraham flexner in (star ; whorton ). commissioned by the carnegie foundation, flexner’s report, medical education in the united states and canada, assessed the educational status, processes of training, and certification of competency in medical schools. the report called on medical schools to enact higher admission and graduation standards, and to adhere strictly to the protocols of mainstream science in their teaching and research. many american medical schools, in particular those that offered courses for alternative therapies, fell short of the standard advocated in the report. all state medical boards gradually adopted and enforced flexner’s recommendations. accordingly, nearly half of medical schools that did not meet its standards were driven out of business (edelson ); the number of medical schools in the u.s. dropped from in to by to by . as biomedicine became the standard and convention and overshadowed rival perspectives, a number of alternative medicine treatments were denigrated as the stereotypical quackery or relegated to fringe status (dossey and swyers ; whorton ). thus, the flexner report was not only a manifesto to reform and consolidate the medical profession but also another force among many that pushed alternative therapies to the margins of american healthcare field. although alternative medicine was declared to be either extinct or endangered (starr ), empirical observation reveals that it never really died out and has now become one of the fastest growing fields in health care. a study on long-term trends in the use of alternative medicine in the u.s. reported that . % of respondents had used at least one alternative therapy and suggested that the lifetime prevalence of alternative medicine has increased steadily since the s (kessler et al. ). moreover, two national surveys conducted by eisenberg and others (eisenberg et al. , ) provide evidence for substantial increases in popularity in more recent years. the percentage of respondents who used alternative medicine increased from . % in to . % in . the surveys also indicate a . % increase in total visits to alternative therapies, from million in to million in . estimated expenditures for alternative medicine also increased . % between and . another national survey conducted in by the centers for disease control and prevention’s (cdc) national center for health statistics (nchs) suggests that the overall use of alternative medicine remained stable between and (tindle et al. ). medical historians and sociologists have emphasized that the impressive change from limited use of alternative medicine to the rapid dissemination after the s was largely driven by widespread interest in counterculture (berliner and salmon ; whorton ; ruggie ). the counterculture in the s began in part as a reaction against the political conservatism of the cold war and the extensive military intervention in vietnam, and later represented more general emphasis on change and experimentation for a range of issues, such as racial inequality, sexual orientation, and women’s rights (anderson ). the countercultural movement groups often explored alternative cultural forms by focusing on the religious and philosophical traditions of other part of the world. calling for a holistic and humanistic healing systems and practices, some of the movement groups in the late s explicitly embraced the term “holistic” to emphasize the multi-dimensional meaning of healing, including the physical, spiritual and psychological dimensions, and directed more attention toward diverse healing traditions other than mainstream western medical treatments (lowenberg ). in the late s and early s, a variety of self-care movements emerged and offered programs or sponsored events to help individuals and families to increase wellness through diet or lifestyle changes (kickbusch ) and in particular through the techniques of alternative healing system, such as yoga, tai chi, and massage (dossey and swyers ). in addition to cultural support for alternative medicine’s values through social movements, the resurgence of alternative medicine has also been attributed to three other sources. one line of research focuses on the inability of conventional medicine to cure chronic illness and the accumulating evidence that alternative medicine is often effective (e.g., goldstein ; spencer and jacobs ; bloom et al. ). another stream of work emphasizes the professionalization of alternative practitioners and decrease in organized power of conventional medical professions (e.g., welsh et al ; wailoo et al. ). relevant to this second line of research is extant work on the growth of specialties and increasing fragmentation of conventional medicine (scott et al. ; c.f., abbott ). the third line of research concentrates on other major market actors, such as pharmaceutical manufacturers, managed care organizations, insurance firms, the media, and government agency such as oam (goldstein ). in this line of work, scholars often situate these actors in broader changes in the healthcare field, such as increased importance of market mechanisms and managerial control (scott et al. ). it is worth noting that the importance of oam for alternative practitioners and users is hard to overestimate. oam has sponsored and conducted alternative medicine research, trained and supported alternative medicine researchers, and most importantly provided information about alternative medicine through information clearinghouse, fact sheets, lecture and workshop series, continuing medical education programs, and publication databases. beyond the formal mission, however, the very existence of the federal government agency represents a major signal for the increased legitimacy of alternative medicine. since its founding in , oam has had a stormy history, attracting many critics from conventional medicine and the nih. however, the beginning in the late s, there has been increased emphasis on efficiency and profit maximization in the healthcare field. researchers have examined different factors that might have facilitated such changes, including the elevation of medical care costs (starr ), social movement that stressed the rights and choices of patients (goldstein ), and court decisions and legislation deregulating the industry (winnick ). in particular, the rapid increase in medical care costs appears to be a major driver for this broader change. healthcare spending reached $ . trillion by . expenditures for prescription drugs more than doubled during the s, reaching in $ billion. criticism can be exemplified as a couple of interesting quotes that young ( ) provides: “the new venture[oam]…would resemble an office of astrology” and “buying snake oil with tax dollars” by robert l. park and ursula goodenough, new york times, january , p. a office survived and grew, as evidenced by the increase in budget from two million dollars in to eighty-nine million dollars in , while the overall nih budget remained the same. moreover, since , oam has been elevated from a program office to a center, called the national center for complementary and alternative medicine (nccam) with a rapidly growing funding ($ million in ). . hospitals and the spread of alternative medicine according to the american hospital association’s (aha) annual survey of hospitals, the number of hospitals offering alternative therapy services has grown from . % in to . % in (figure . ), suggesting that the spread of alternative therapies is still at its early stage. source: american hospital association. - . figure . percent of hospitals offering alternative medicine . % . % . % . % . % . % . % . % % % % % % % pe rc en t figure . illustrates geographical distribution of hospital-based alternative therapies at the end of . darker shades represent high percentages of hospitals offering alternative therapies, whereas lighter shades indicate low percentages. the figure shows that the heaviest concentrations of hospitals that offered any types of alternative therapies reside in colorado and in the eastern seaboard, primarily in new york, new jersey, connecticut, delaware, vermont, new hampshire, and the district of columbia. source: american hospital association. . figure . geographic distribution of hospitals offering alternative therapies finally, figure . reports percent of hospital-based alternative medicine offerings by therapy type in . this figure indicates that massage therapy was the most widely offered modality in hospitals in , followed by taichi/qigong, acupuncture, and therapeutic touch. source: american hospital association. . alternative medicine survey of hospitals. chicago: health forum. figure . percent of alternative medicine offerings by therapy type (n= ) there is virtually no research on factors shaping the increased acceptance and diffusion patterns of alternative therapy services among conventional hospitals. to obtain an understanding of conditions affecting a hospital’s adoption of alternative therapies, i conducted field interviews with a vice president of a mid-sized urban hospital, an executive director of a medical research institute, four medical directors of alternative medicine programs, a medical researcher and two managers of the samueli institute (a nonprofit medical research organization), a management consultant, and two alternative therapists who provided treatment services in a hospital setting. using a semi-structured protocol, the field interviews lasted approximately one hour and sometimes included clinic and hospital tours and on-site observations. . % . % . % . % . % . % . % . % . % % % % % % % % % naturopathy homeopathy chiropractic acupressure reflexology therapeutic touch acupuncture taichi/qigong massage the interviews revealed that an individual hospital’s propensity to accept or reject alternative therapies would be affected by several factors. first, it was often noted in interviews that hospitals tended to include alternative therapies to meet consumer demand, generate new sources of revenue, and increase market share. in his emphasis on consumer demand as a major reason to provide alternative therapy, a vice president of a mid-sized hospital in san diego said, “we cannot ignore their [consumers’] requests. we’re just providing what they want.” in line with this, two directors of alternative medicine programs in new york and new jersey respectively suggested that they generally viewed alternative medicine programs as a marketing opportunity to attract new patients to their hospitals and differentiate themselves in the market. this observation is supported by the finding that . % of hospitals offering alternative therapies cited patient demand as the primary reason for their offers (ananth and martin ). as a management consultant indicated, “the prevailing assumption that hospitals rely only on procedures or services that have a proven evidence base is a myth.” this consultant also noted that hospitals are seeking to capture the vast amount of potential revenue – an estimated $ -$ billion on all alternative therapies, dietary supplements, and other healthcare products. this emphasis on consumer satisfaction, revenue generation, and differentiation appears to reflect broader changes in the healthcare field, such as emphasis on cost containment and increased competition among hospitals. since s, the u.s. hospital industry shifted focus from increasing access to health care to controlling costs (scott et al. ). for instance, the medicare prospective payment system (pps) was introduced by the federal government in october, , as a way to the finding is based on the aha cam survey of hospitals. the survey was mailed to all hospitals from aha’s inventory of hospitals in december . a total of responses were received for a response rate of %. of responding hospitals ( . %) stated they did offer one or more alternative therapies in the hospital. control hospital costs by paying a fixed fee for each service. in , president clinton signed the balanced budget act into law, which introduced more stringent cost controls for hospitals (cohen ). accordingly hospitals received reduced cash payments for services, often leading to cash-flow problems (ruggie ). although hospitals attempted to increase their patient and service volume, their attempts created more competition for patients (d’aunno, succi and alexander ). this increased competition might have encouraged some hospitals with comparative disadvantages to make substantial changes in their service mix through the adoption of new treatment services, such as alternative therapies. hospital managers and alternative therapists told me that they have paid attention to the activity of managed care organizations (mcos). my investigation revealed that some mcos were indeed active in offering coverage for alternative medicine. for instance, oxford health plans created a network of credentialed and/or licensed alternative therapists in and now provide its members with access to a network of over , practitioners including acupuncturists, massage therapists, naturopaths, chiropractors in connecticut, new york, and new jersey. kaiser, aetna, prudential, blue cross and blue shield plans also provide some types of coverage (ruggie ). a national survey indicates that about two-thirds of managed care organizations offer some type of coverage for at least one alternative therapy (landmark healthcare, inc. ). the actual pattern of coverage varies, however. some plans include certain therapies as covered benefits with higher deductible, while others offer a contracted network of providers who agree to provide services to group members at a discounted rate (ruggie ). it should be noted that the actual under pps, hospitals are paid a pre-determined rate for each medicare admission. each patient is classified into a diagnosis related group (drg) on the basis of clinical information. except for certain patients with exceptionally high costs (called outliers), the hospital is paid a flat rate for the drg, regardless of the actual services provided. insurance expenditure for alternative therapies remains minimal. in the study of insurance expenditure, lafferty et al. ( ) revealed that alternative providers accounted for only . % of private insurance expenditure in washington. all interviewees unanimously agreed that regulations might play the most fundamental role in offering alternative medicine in many ways. related to insurance coverage, for example, some states have mandates for coverage. new york state required insurers and hmos to provide coverage for chiropractic care in . the most proactive state, however, is washington, which passed a law in mandating that all commercial health insurance companies cover the services provided by all licensed alternative practitioners. as of , seven states had mandated coverage for acupuncture and two states have mandates for naturopathy (sturm and unutzer - ). another type of legislation often mentioned in the interviews was medical freedom acts advocated by consumer groups and health freedom movement activists to promote access to all healthcare information, services, treatments, and products including alternative therapies. the first medical freedom act was passed in alaska in . this legislation specifically articulated the principle that practitioners could not lose their medical licenses solely because they integrate alternative therapies into clinical care. this is often regarded as a critical point in state medical board regulation, since it “stops state medical boards from exerting pressure on alternative therapists simply due to the boards’ bias against unfamiliar modalities” (cohen ). more states followed, including north carolina in , oklahoma in , new york in , and others. new york’s legislation (n.y. educ. law § ( )(e)) indicates that “nothing in the medical practice act should be construed to prevent a licensed practitioner from using whatever medical care, conventional or nonconventional… effectively treats human disease, pain, injury, deformity, or physical condition” (cohen : ). my interviews also revealed challenges for providing alternative therapies within hospitals, including physician resistance and lack of qualified practitioners. physician resistance appears to stem in part from lack of biomedical evidence to confirm the safety and efficacy of most alternative therapies. the editors of the new england journal of medicine, one of the most prestigious and widely read medical journals, defined unconventional medicine as medicine that has not been scientifically tested and whose advocates largely deny the need for such testing, and thus relying on such medicine would be “a reversion to irrational approaches to medical practice” (angell and kassirer ). although alternative therapies have become more accepted since then, many conventional doctors seem to be still cautious in their approach to alternative medicine, reiterating their claims about lack of biomedical evidence for most alternative therapies. in my interviews, two medical directors of alternative medicine programs and a vice president of a hospital confirmed that lack of evidence-based studies was a major source of physician resistance in the adoption process. qualified practitioners are scarce resources for hospitals that plan to adopt alternative therapies. figure . compares conventional medicine with selected alternative therapies in terms of the (estimated) number of practitioners. there are , massage therapists in , , chiropractors in , , acupuncturists in , and , naturopaths in , compared to , mds in . the lack of qualified practitioners appears to reflect the fact that alternative medicine is at its early stage of professionalization. although provider practice acts exist for acupunctures, homeopathy, massage therapy, and some other modalities in varying numbers of states, chiropractors are the only alternative providers licensed in all fifty states. as of , chiropractors, acupuncturists, massage therapists, and naturopaths are the only groups whose training is accredited by organizations nationally recognized by the u.s. department of education. moreover, there is no consistency between the states in how they handle alternative therapists, and thus state regulations are often contradictory (milbank memorial fund ; goldstein ). , , , , , , , , , , , medical doctors massage therapists chiropractors acupuncturists naturopathic doctors sources: medical doctors: bureau of labor statistics ( - ) massage therapists: american massage therapy association ( ) chiropractors: bureau of labor statistics ( - ) acupuncturists: cohen ( ) naturopathic doctors: boon et al. ( ) figure . number of conventional and alternative medical practitioners practitioners, n chapter theoretical background this chapter develops a theory of contagion across multiple practices to explain how the diffusion of some practices influences the diffusion of other practices. my main argument is that prior adoptions of a practice are not only relevant to the spread of the same practice, but they are also relevant because they can affect some potential adopter’s perceptions of other associated practices. insofar as a practice “a” positively affects perceptions of the other practice “b,” b is more likely to be adopted. raised to a level of symbolic abstraction, this involves contagion in which a infects b. in order to examine this contagion process systematically, i first review previous research on contagion between actors (section . ). the review is intended to gain some useful insights that can be incorporated into the theorization of contagion across practices and to identify some limits that should be addressed to develop specific hypotheses tested in my research setting (section . ). prior research suggests that contagion occurs between prior and potential adopters embedded in social linkages when potential adopters use others as social cues to manage uncertainty about new practices. the emphasis on uncertainty as a general condition that makes social cues important seems useful in explaining contagion between practices. however, a focus on social linkages between prior and potential adopters seems less useful in the current context of an emerging market niche where no direct social cues are available due to the scarcity of prior adopters. in section . , i propose that categorization, which lumps similar practices into a common category, can serve as a cognitive basis for association between practices that would otherwise be viewed as disconnected. insofar as practices belong to a common category, the imagery of ties between them may emerge, although such ties are not purely relational (strang and meyer ). given the presence of categorical association, the adoption of one practice is likely to become an informational cue on which potential adopters rely in deciding whether to adopt other practices. especially when adoption decisions are made in the context in which a new practice’s value is highly uncertain and no direct social cues are available due to the absence of prior adopters of the same practice, those who adopted categorically associated practices can be regarded as alternative sources of social cues that potential adopters will likely use to manage uncertainty. moreover, as long as informational cues of one practice enhance the familiarity and acceptability of the other practice, this type of influence between practices may also be understood as the contagion of legitimacy in which the legitimacy of some practices is transferred to other practices in the same category (zucker ; dobrev, ozdemir and teo ). this chapter concludes with a general proposition: given the presence of perceived association between practices, the diffusion of some practices increases the likelihood of other practices being accepted by potential adopters. . network-based contagion researchers have offered the important insight that innovation diffusion may be driven by social contagion involving “some form of meaningful communication and influence” between actors who have and have not yet adopted new practices (strang and tuma : ; e.g., ryan and gross ; coleman, katz, and menzel ; tolbert and zucker ; fligstein ; davis ; haunschild ; jensen ). in this view, contagion has been typically proposed as a useful concept to examine how adoption decisions of potential adopters are affected by their exposure to prior adopters. central to this concept of contagion, according to burt ( ), is the “synapse over which innovation is transmitted” between prior and potential adopters (p. ): in the simplest case, the interpersonal synapse over which social contagion occurs involves one individual, ego, who has not yet adopted the innovation under study, and a second individual, alter, who has adopted. something about the social structural circumstances of ego and alter makes them proximate such that ego’s evaluation of the innovation is sensitive to alter’s adoption. as for the “something about the social structural circumstances of ego and alter,” scholars have typically focused on interaction networks which serve as the conduits of diffusion. for instance, classical diffusion studies (e.g., coleman, katz, and menzel ) often emphasized the importance of cohesion – close social relations characterized by frequent, face-to-face interactions engendering much exchange of information. the more frequent the interaction between prior and potential adopters, the more likely it is that potential adopters will actually adopt new practices. this type of relations is often characterized by strong ties that facilitate actors to share the same understanding of new practices and to exert normative pressures for conformity (strang and soule ). more recent work (e.g., white, boorman, and breiger ; burt ; galaskiewicz and burt ; strang and tuma ) refined this view, suggesting that structurally equivalent actors – those who have similar ties to others – attend carefully to each other. structurally equivalent actors are proximate to the extent that they have the same pattern of relations to others. this view highlights competition between actors who use one another to evaluate their relative standing – e.g., two hospitals trying to keep up with new medical innovations in order to maintain their reputation and attract patients. thus, the more similar the ties of prior and potential some researchers have argued that physically proximate actors influence each other. insofar as physical proximity increases the chance to observe prior adoptions, it not only sends information about new practices to potential adopters, but also serves as a basis for vicarious learning (bandura ; denrell ). physical proximity has been examined in a wide variety of contexts, including the spread of municipal reform (knoke ), the adoption of matrix management (burns and wholey ), and the diffusion of golden parachutes in geographical regions (davis and greve ). adopters to the third actors, the more likely it is that potential adopters will quickly adopt new practices perceived to make prior adopters more competitive. stated generally, these studies provide relational models which emphasize the role of social ties in linking prior and potential adopters. the role of relational linkages in contagion appears to become more important when adoption decisions are made in highly uncertain contexts. indeed, adopting an innovation is inherently uncertain since it often involves poorly understood ideas and procedures, little evidence for effectiveness, and unpredictable returns. actors may then cope with such uncertainty by depending on others to guide their adoption behavior. in burt’s word, “[s]ocial contagion arises from people proximate in social structure using one another to manage the uncertainty of innovation” ( : ). the emphasis on the role of uncertainty in contagion echoes the general argument that uncertainty increases the importance of social cues. this argument is supported by a wide variety of theoretical perspectives, such as neoinstitutional perspective (e.g., dimaggio and powell ), vicarious learning theory (bandura, ; denrell ), and economics (bikhchandani, hirshleifer, and welch ; banerjee ). . limitations of prior research on contagion the review above was aimed at gaining some insights that could be incorporated into the theorization of contagion across practices. it appears that uncertainty serves as an important condition for contagion across practices (the focus of this research), as well as contagion between actors (the focus of traditional research on diffusion). without uncertainty about a new practice, potential adopters are less likely to pay attention to information about the diffusion of related practices, or even the same practice. instead, the spread of a new practice will be primarily driven by the practice’s characteristics and an adopter’s idiosyncratic needs. thus uncertainty should be incorporated into my theoretical argument for contagion across practices. however, there are at least two conditions that limit the applicability to the current study: the scarcity of prior adopters and the absence of direct ties between therapies. scarcity of prior adopters: research on contagion between actors assumes the presence of prior adopters who can influence the adoption decision of potential adopters. especially under high uncertainty about a new practice, potential adopters may want to draw on others to obtain social cues to guide their behavior. the most likely targets for such cues are those who already adopted the same practice. thus the presence of prior adopters represents a critical condition that social contagion can operate, because they provide sources of social cues to potential adopters. but what if there are no or very few organizations that already adopted the same practice? without prior adopters, no direct social cues are available for potential adopters. therefore it is not clear whether and how social contagion operates in the context where the adoption of a new practice involves high uncertainty but no direct social cues are available due to the absence of prior adopters of the same practice. this is often the case in an emerging market, such as a new niche of alternative medicine, where all actors in the market niche are by definition early entrants and have to engage in the very early stage of practice diffusion (aldrich and ruef ). chiropractic therapies, for instance, were available in at only hospitals out of the total number of u.s. hospitals ( . %). in this setting, the small number of hospitals that adopted chiropractic is less likely to serve as an important source of social influence. first of all, the scarcity of prior adopters may lower the chance that potential adopters observe the actions of prior adopters. moreover, even if potential adopters are exposed to the small number of prior adopters, it is not obvious if the adoption of chiropractic by potential adopters is substantially dependent on the actions of prior adopters of chiropractic. on the one hand, the small number of prior adopters may be not enough to generate social influence that makes potential adopters conform to the actions of prior adopters, as threshold models of decision making suggest (granovetter ; wood and doan ). on the other hand, potential adopters may not regard the small number of prior adopters as useful information for their decision making, as indicated by the organizational learning literature (march and simon ; denrell ). absence of direct ties between practices: the traditional approach to contagion also assumes the presence of relational linkages that connect prior and potential adopters. in this approach, social linkages are the pathways along which “some form of meaningful communication and influence” spreads between prior and potential adopters (strang and tuma : ; burt ). contagion between prior and potential adopters thus relies on interaction ties and network positions that make potential actors sensitive to the influence of prior adopters. unlike prior research on contagion between prior and potential adopters, my research concentrates on contagion across multiple practices that have no direct ties. how would the diffusion of one practice influence the diffusion of another practice without direct ties that serve as the channels of influence? hence, the absence of relational linkages between practices is another source that significantly limits the applicability of the traditional contagion argument. i suggest that the two conditions, the scarcity of prior adopters and the absence of direct ties between practices, represent important points of departure for the theoretical development of the current study. an immediate answer to the question of “what if there are no or very few prior adopters?” would be that potential adopters in an emerging market niche cannot use social cues from prior adopters. this answer implies that when there are no or very few prior adopters, potential adopters depend not on the actions of prior adopters but on their idiosyncratic interests and unique internal demands. this conforms, at least partially, to the argument of extant research that early adopters rationally pursue their unique interests, while late adopters are under increasing social pressure (e.g., tolbert and zucker ; westphal, gulati, and shortell ; sherer and lee ). but given the established proposition that uncertainty increases the importance of social cues (e.g., dimaggio and powell ; bandura ; denrell ; banerjee ), it is also hard to reject the influence of social cues entirely. thus i suggest that the scarcity of prior adopters can serve as a condition under which potential adopters are motivated to look to other sources of social cues. as alternative social cues, i concentrate on other organizations that adopted other practices associated with a focal practice that potential adopters eventually adopt. central to these arguments are the questions of whether such association exists between multiple practices and how the association influences adoption decisions. . category-based contagion as an underpinning process of such association, i focus on categorization that provides perceived association between multiple practices that would otherwise be regarded as disconnected. a category is a set of items that are assigned a common identity based on perceived similarity. categorization involves perceptual symbol systems that lump objects into one of several possible categories (rosch ; barsalou ). an important effect of categorization is the simplification of cognitive processes by delimiting how we allocate attention (simon ; march and simon ). in the same line, social cognition research suggests that categorization is a fundamental cognitive mechanism. for example, stereotyping is an important implicit mode of categorization in which humans mentally classify other individuals into a particular group and unconsciously apply the typical characteristics of the group to individuals in the group (greenwald and banaji ). if categorization simplifies the cognitive process, it will require less mental resources. insofar as the category- based cognitive process is mentally less demanding and does not lead to negative consequences, we are unlikely to change it deliberately (devine ; lounsbury and hayagreeva ). this implies that categorization, once established, may have substantial, continuous influence. researchers have shown that an established category has substantial influence on social actors by providing an important foundation for conformity in various settings. in particular, categorization is at the heart of institutional approaches (zuckerman ; scott ). this perspective suggests that categories, once accepted as legitimate models, provide a default condition for making sense of social arrangements, thereby shaping perception, interpretation, and interests of social actors (lounsbury and hayagreeva ). thus categories define the range of appropriate actions, encourage imitation, and decrease variety (e.g., dimaggio and powell ; scott ). for instance, zuckerman ( ) showed that the stock price of a firm was discounted if the firm was not covered by the securities analysts who typically used existing classification systems for industry and organization analysis. in the similar vein, this study concentrates on the influence of a perceived common identity and shared understanding about similarity between categorized items (dimaggio ; barsalou , ; hamilton ). the perceived similarity and identity are important because they may serve as a cognitive basis for association between practices. as strang and meyer ( ) suggest, “the cultural understanding that social entities belong to a common social category constructs a tie between them” (p. ). although their focus was not directly on multiple practices but on social actors, the insight will apply to my research setting where disparate medical therapies are understood through a formal categorical scheme widely available in the health care field. insofar as different practices are organized into a common category, such as “alternative medicine,” associational ties between them emerge, although such ties are not purely relational. given the presence of categorical association, then, why does contagion across practices occur? a primary mechanism hinges on the role of associational ties in disseminating informational cues on which potential adopters rely in deciding whether to adopt other practices. i argue that associational ties constructed by cultural categories are functionally equivalent to relational ties in their roles in the diffusion of practices. in order to explain the functional equivalence of categories to relational linkages, it is useful to draw on the argument that “the presence or absence of a tie between two actors becomes the basis on which third parties make inference about underlying qualities of those actors” (podolny : ). podolny and his collaborators examined the relevance of this argument in a wide array of contexts, including investment banking, wine, semiconductors, shipping, and venture capital (e.g., podolny , ; podolny and stuart ; podolny, stuart, and hannan ; benjamin and podolny ). in this view, ties to prominent actors are important not because they convey information and resources between actors but because they affect third parties’ perceptions and the inferences about the quality of the actors involved (stuart et al. ; podolny ). insofar as categorization creates some form of linkages between practices, we can replace “a tie between two actors” with “a (non-relational) tie between two practices.” in the context of the adoption of alternative therapies by hospitals, the in addition, baum and oliver ( ) suggested that a day care center’s ties to prominent organizations, such as governmental agencies, have positive effects on its survival. similarly, in the context of initial public offerings, stuart, hoang, and hybels ( ) showed that private firms involved in relationships with prominent exchange partners performed better than otherwise comparable firms that lack prominent associates. category-based association linking two different therapies may become the basis on which hospitals make inference about underlying qualities of the therapies. for example, if therapeutic touch is associated with acupuncture that is previously adopted by hospitals, the inferences that other hospitals (potential adopters) make about the quality of therapeutic touch will be positively affected by the association. then, the diffusion of acupuncture will increase the likelihood of therapeutic touch being accepted by potential adopters. here contagion between therapeutic touch and acupuncture occurs. in this example, association is important not because it serves as a conduit of resources and information passed between two therapies but because it affects some hospital’s perceptions of the qualities of therapies. in sum, given the presence of categorical association, the adoption of some therapies by prior adopters may play a role of informational cues on which other hospitals depend for their adoption decisions. since informational cues can enhance the familiarity and acceptability of new practices, this type of contagion may also be understood as the contagion of legitimacy, the process in which cognitive legitimacy of accepted practices is transferred to other less established practices (zucker ). innovations, by definition, embody new elements that lack cognitive legitimacy or taken-for-grantedness. simply put, potential adopters are not certain about the value of new practices. insofar as practices are perceived as similar and linked to each other, the acceptance of some practices by hospitals makes other associated practices more familiar and perceived to be more valuable. the increased information availability and familiarity about associated practices, then, may enhance the likelihood that other hospitals are exposed to information about new practices, perceive them as acceptable, and eventually consider the adoption of some of the practices. contagion between practices may also be driven by competitive concerns. this appears to involve two-stage process. potential adopters are first attracted to new practices since they are concerned that their rivals who have adopted the new practices could gain a competitive advantage unless they adopt the practices (e.g., burt ). at the second stage of competition, potential adopters try to establish relative desirability and avoid direct competition (fennell ; zuckerman ). this competitive concern, then, leads to differentiation in which potential adopters attend to similar practices in a category, but not the same ones. in my empirical context, the increasing popularity of alternative medicine appears to encourage hospitals to attend to a set of emerging therapies labeled as “alternative medicine,” but hospitals try to differentiate their treatment services from those already provided by their peers. this argument conforms to prior research on diffusion and competition: “while competition often spurs imitation, it may also spur differentiation” (strang and soule ). in the study of radio stations, for instance, greve ( ) showed that a station’s decision to determine market positions is more influenced by the behavior of stations in other local markets than stations in their local markets. these arguments lead to a general proposition: given the presence of perceived association between practices, the diffusion of some practices increases the likelihood of other practices being accepted by potential adopters. chapter hypotheses this chapter presents hypotheses that examine the formal incorporation of alternative therapies into hospitals’ array of conventional treatment services. i focus on nine of the most widely used alternative therapies, as shown in figure . : acupressure, acupuncture, therapeutic touch, chiropractic, homeopathy, massage therapies, naturopathy, reflexology, and taichi/qigong. i first ask if prior adoptions of eight alternative therapies already adopted by hospitals increase adoption rates of the other alternative therapies (section . ). since alternative therapies are less likely to have the same chance of affecting and being affected by one another, i also develop other hypotheses regarding factors that explain differential influences that some therapies may have on adoption rates of other therapies. the first set of hypotheses focuses on categorical characteristics of therapies (section . ), while the second set of hypotheses primarily relates to relational characteristics of hospitals (section . ). . contagion across alternative therapies this section applies the proposition stated in chapter to the empirical context: the emerging market niche of alternative medicine in the u.s. health care field. my main argument is that prior adoptions of alternative therapies by hospitals enhance adoption rates of other therapies which are nevertheless in the same category. as shown in figure . , alternative medicine represents the distinct categorical name that broadly includes the nine therapies. take acupuncture as an example. insofar as the categorization scheme provides the shared understanding that multiple practices (including acupuncture) belong to a common category of “alternative medicine,” the therapies will likely be perceived as similar to and associated with acupuncture. the perceived similarity serves as a critical condition under which a focal hospital attends to the spread of other related therapies to guide its adoption behavior. then, the acceptance of other practices will become an informational cue that may positively affect the focal hospital’s perceptions of alternative medicine as a whole. since acupuncture is a member of the same category (i.e., alternative medicine), the focal hospital is more likely to perceive acupuncture as more familiar and acceptable. thus, i expect that: hypothesis : the number of other hospitals adopting any of the eight alternative therapies is positively associated with a focal hospital’s adoption of the other therapy. . categorical positions and contagion figure . shows that within the broad category of alternative medicine, there are a series of subcategories, each of which includes a number of specific therapies. and each therapy takes a unique position in the categorical scheme relative to other therapies. for instance, acupuncture and acupressure are both in the same broad category (“alternative medicine”) and the sub-category (“alternative systems of medical practice”). however, acupressure is also organized into another subcategory—i.e., “manual healing methods” simultaneously. i argue that these categorical characteristics based on their positions in the category may account for differences in adoption rates. i focus on two key characteristics: categorical similarity and ambiguity. . . categorical similarity therapies are more similar when they are in the same subcategories. for instance, acupuncture is more similar to homeopathy than to chiropractic, since acupuncture and homeopathy are located in the same subcategory of “alternative systems of medical practice.” alternative therapies that are more similar to a focal therapy (e.g., acupuncture) will likely be perceived as having stronger association with each other and thus more salient for hospitals adopting that therapy (acupuncture). thus prior adoptions of therapies will be positively associated with the adoption rate of the focal therapy if the therapies are in the same subcategory than if they are not. for instance, the effect of prior adoptions on the focal hospital’s adoption rate of acupuncture will be significant when adopted therapies are homeopathy, naturopathy, acupressure, massage, and taichi/qigong (figure . ). therefore, i posit that: hypothesis : the number of other hospitals adopting therapies in a sub-category is positively associated with the focal hospital’s adoption of any of the other therapies in the same sub-category. . . categorical ambiguity a therapy lies in an ambiguous categorical position if it is a member of more than one sub-category. similar therapies may be either categorically ambiguous or unambiguous. for example, acupressure, massage therapies and taichi/qigong are categorically similar to acupuncture, but unlike acupuncture they are categorically ambiguous since they are organized into two sub-categories simultaneously— alternative systems of medical practice and manual healing methods (see figure . ). if the diffusion of an alternative therapy by hospitals serves as an informational cue that guides the behaviors of other hospitals, the influence of this cue can be expected to be greater when the cue is less ambiguous. in contrast, the ambiguous categorical membership will negatively affect perceived similarity and association between practices. as zuckerman ( ) suggested, for instance, failure to conform to established categories leads to confusion over the identity of products or services, which in turn depresses attention. i expect that prior adoptions of therapies will be more positively associated with the adoption rate of the focal therapy if the therapies are exclusively in the same sub-category. for instance, the effect of prior adoptions on the focal hospital’s adoption rate of acupuncture will be stronger when the adopted therapies are homeopathy and naturopathy than when the adopted therapies include acupressure, massage, and taichi/qigong (figure . ; see also figure . ). thus i posit that: hypothesis : the number of other hospitals adopting therapies exclusively in a given sub-category is more strongly associated with a focal hospital’s adoption of the other therapy in the same sub-category. hypothesis : the number of other hospitals adopting therapies that are members of more than one sub-category is less strongly associated with the focal hospital’s adoption of the other therapy in the same sub-category. hypotheses and are based on the argument that categorically ambiguous therapies have an unclear identity which in turn is subject to social penalty (i.e., lack of attention). if categorically ambiguous therapies indeed have weaker impact on the adoption of other therapies in the category, what about the flip side—i.e., the influence of other therapies on categorically ambiguous therapies? categorical ambiguity stems from dual membership of sub-categories. the effect of dual membership seems double-sided. on the one hand, double membership may weaken the influence of prior adoptions on categorically ambiguous therapies. hospitals may perceive the therapies with dual membership as less coherent and consistent with other therapies. such confusion over identities depresses attention (zuckerman ) and inhibits legitimacy transfer (dobrev et al. ). on the other hand, dual membership may attract greater attention than those with single membership since it can serve as double sources of informational cues and legitimacy transfer. thus, acupressure, massage, or taichi/qigong—those that hold dual membership—can either benefit from their categorical positions or be subject to social penalty – i.e., lack of attention and legitimacy. i propose the following competing hypotheses: hypothesis a: the number of other hospitals adopting any of the eight alternative therapies is more strongly associated with the focal hospital’s adoption of therapies that are members of more than one subcategory than with the adoption of therapies that are members of one subcategory. hypothesis b: the number of other hospitals adopting any of the eight alternative therapies is less strongly associated with the focal hospital’s adoption of therapies that are members of more than one subcategory than with the adoption of therapies that are members of one subcategory. . relational positions and contagion i also formulate hypotheses that primarily examine relational characteristics of hospitals. by relational characteristics of hospitals, i mean patterns of connections between individual hospitals. i suggest that if a focal hospital is exposed to other hospitals that adopted one therapy (for instance, chiropractic) through relational linkages, the focal hospital attends to the spread of other associated therapies (such as therapeutic touch) in the same category. thus, this is not to replicate prior research on diffusion that claims that prior adoptions of chiropractic lead to additional adoptions of chiropractic; rather i suggest that relational linkages of hospitals can increase the awareness of chiropractic, which eventually influences the adoption of associated therapies, such as therapeutic touch, on the basis of categorical association. i focus on three relational properties: network ties, structural equivalence, and status. . . network ties and contagion across alternative therapies in the hospital industry, two kinds of network ties may be especially relevant to the transfer of information about new therapies between hospitals: common membership in strategic alliances and multihospital systems. alliances refer to contractual arrangements between hospitals for their collaboration to provide health care services. multihospital systems consist of two or more physically separate hospitals sharing common ownership. hospital alliances and systems are often characterized by high levels of informal and formal communication between member organizations (westphal, gulati, and shortell ; krishnan, joshi, and krishnan ). this form of interaction also facilitates mutual understanding of each hospital’s idiosyncratic needs, which in turn enhances the quality of information obtained from hospitals that have prior experience in adopting alternative therapies (burt ; gulati ). if the diffusion of an alternative therapy by hospitals serves as an informational cue that facilitates adoptions of other associated therapies by other hospitals, the cohesive relationships based on close network ties serve as conduits or channels through which the informational cue flows between connected hospitals. these arguments suggest that prior adoptions of other therapies are more salient for the adoption of the focal therapy when hospitals are connected through network ties of alliances or systems. thus, i expect that: hypothesis : the greater the number of alliance ties (system ties) to prior adopters of any of the eight therapies, the more likely a focal hospital will adopt the other therapy. . . structural equivalence and contagion across alternative therapies the notion of structural equivalence (white et al. ; burt ; galaskiewicz and burt ; strang and tuma ) may also be relevant to the spread of informational cues about alternative therapies. in particular, the logic of competition highlighted in the structural equivalence model appears to fit in with contagion between practices which is in part driven by competitive concern. potential adopters are apt to be concerned that their rivals who have adopted alternative therapies could gain a competitive advantage unless they also adopt the therapies. since structurally equivalent hospitals are likely to attend carefully to each other, the information cue conducive to contagion between practices will spread fast between them. hypothesis : the greater the number of structurally equivalent hospitals offering any of the eight therapies, the more likely a focal hospital will adopt the other therapy. . . status and contagion across alternative therapies the salience of informational cues may be influenced more strongly by high- status adopters than by low-status adopters. status refers to a hierarchical ordering of an actor’s position (podolny , ; phillips and zuckerman ; deephouse and suckman ). recent work suggests that high-status provides a number of benefits related to market competition (podolny ). for example, a higher-status actor can often provide a good or service of a given quality at a lower cost (podolny , ), charge a higher price (benjamin and podolny ), and gain easier access to resources (stuart et al. ). these benefits may attract attention of lower- status actors who generally attempt to obtain high-status, leading them to imitate high- status actors. thus, the adoption of alternative medicine by high-status actors exerts greater normative influence on the social acceptability of alternative medicine. “[a]doptions by central actors shift community norms or interaction patterns sufficiently that others find it hard not to go along” (strang and soule : ). if the diffusion of an alternative therapy by hospitals serves as an informational cue that facilitates the spread of other associated therapies, the social visibility and acceptability provided by high-status hospitals will increase the impact of the informational cue on potential adopters’ perceptions of other associated therapies. thus, i expect that: hypothesis : the greater the number of high-status hospitals having any eight therapies, the more likely a focal hospital will adopt the other therapy. chapter methods . sample the study sample consists of all community medical hospitals in new york state in the period - (as of , n= ). community hospitals refer to short-stay, non-specialty hospitals which meet most community needs for hospital care. it is worth noting that community hospitals are a highly legitimate organizational form (scott et al. ). since the contagion of legitimacy in part depends on the role of highly institutionalized collectivity in conferring legitimacy to new, unfamiliar practices (zucker , ), it is important to make sure that such organizations exist in my empirical setting. hospitals are a taken-for-granted organizational arrangement for providing health care services, and this organizational form is also endorsed through licensure and accreditation by other highly institutionalized regulative authority as well as established professional bodies, such as the american medical association (ruef and scott ). the hospital industry in new york state provides a suitable context in which to examine the diffusion of alternative therapies. new york had shown an impressive increase in acceptance of alternative medical practices by hospitals in the study period, and thus temporal variation in diffusion of alternative medicine was greater than other states. for instance, the number of hospitals offering any types of alternative medicine increased from in to in . new york has also been characterized by active legal regulation for alternative medicine (e.g., early adoption of medical freedom act). moreover focusing on one state is a good analytical strategy, since legal status of alternative therapies, such as scope of services and licensing legislation, is significantly different across states. . theoretical scope and empirical setting the hypotheses proposed in this research are best tested in markets with three basic characteristics. first, the market should be characterized by a variety of new practices that are simultaneously introduced, promoted, and experimented, but weak in their legitimacy. second, my theoretical framework requires a setting in which there is a considerable level of uncertainty such that potential adopters are motivated to depend on social cues in the adoption decisions. third, a categorization scheme should exist and provide perceptions of similarity between diverse practices. the emerging market niche of alternative medicine meets these requirements. as i fully detailed in chapter , alternative therapies include a wide range of multiple practices whose characteristics are substantially different in terms of historical origins, actual delivery of treatments, diagnostic procedures, clinical evidence, and legal status. moreover, the u.s. health care field has been generally characterized by high uncertainty. health outcomes are typically complex and difficult to assess (ruef and scott ; whccamp ). the quality of alternative therapies is even more uncertain in part because conclusive biomedical evidence for the effectiveness of such modalities is not available yet. the presence of categorization for alternative therapies critically determines theoretical scope of this research. as figure . shows, a well-defined categorical system exists. the categorization scheme uses the term “alternative medicine” to represent a category that broadly sets the boundary of alternative therapies. this broad category consists of a series of subcategories, each of which includes a number of specific therapies. the categorization scheme was first proposed by the first conference on alternative medicine (the chantilly conference) in september , with a total of more than practitioners and researchers of alternative medicine. the editorial review board that supervised the structuring of the information presented later organized a governmental publication, alternative medicine: expanding medical horizons. according to the publication, the main goal of the conference was to establish a baseline of information on the state of alternative medicine, which would serve as an important foundation for future research and policy discussions (workshop on alternative medicine : vii and x). the main route chosen was to describe similarities and differences among therapies (ruggie ). the description was based on seven subcategories, “fields of practice,” as shown in table . . the analytic basis of seven subcategories, however, was not clearly specified by the conference. most of the subcategories appear to be roughly based on major treatment techniques typically used by alternative therapists of each subcategory. for instance, manual healing methods include therapies that employ physical forces (e.g., chiropractic and therapeutic touch), whereas the mind-body category consists of psychological techniques such as mental imaging and hypnosis (workshop on alternative medicine : xlvi). however, some subcategories do not follow this rule of categorization. for example, alternative systems of medical practices include therapies that have been traditionally used by specific ethnic groups (e.g., china and acupuncture; india and ayurvedic medicine). after the conference, the categories of alternative therapies were adopted by the oam, which used the proposed categories when providing funding to universities and individual researchers and documenting fact sheets available for the general public. over time, the categories of alternative therapies have become institutionalized. as shown figure . , the term, “alternative medicine,” has been widely available, and viewed as an appropriate name to make sense of non-conventional medicine. the categories of alternative medicine, either in part of as a whole, have been extensively used by nationwide surveys (e.g., barnes et al. ), government reports (e.g., whccam ), clinical trials, and popular journals and newspapers. table . provides evidence of the effect that the categorical scheme has had on perceived similarity between nine alternative therapies that i concentrated on in this research. as a proxy measure of closeness between therapies, i calculated co- occurrence scores of all pairs of therapies in biomedical journal articles in medline for two-ten periods— - and - . for example, to obtain the co- occurrence score between acupuncture and acupressure in - ( . %), i divided the number of biomedical journal articles that examined both acupuncture and acupressure by the total number of articles that investigated any of the two therapies. the average of co-occurrence scores increased by . % between the two periods, suggesting that nine therapies were getting closer. the result of paired t-test shows that the difference in co-occurrence scores between the two periods is statistically significant (t = . , df = , p = . , one-tailed test). figure . provides a graphical representation for change in closeness. to illustrate the relative distance of all nine therapies, i drew upon the concept of closeness centrality. researchers have developed several centrality measures, such as degree, closeness, and betweenness, to understand an actor’s prominent position relative to others. closeness centrality represents an actor’s ability to access independently other actors (wasserman and faust ). because this measure is computed as the inverse of the sum of the shortest distances between each node and every other node in the network, it is particularly relevant in showing how close a therapy is to all the other therapies. this measure ranges from to . i added one more therapy, pet therapy which was not in the category, to better compare the effect of categorization. i measured a therapy’s closeness centrality scores groups of therapies using the co-occurrence matrix in table . . figure . shows that nine therapies (except pet therapy) were getting closer since when the categorical scheme was proposed and became widely available. in contrast, pet therapy remained far from other nine therapies. the average closeness centrality score for nine therapies (except pet therapy) increased from . to . , suggesting that the relative distance of the therapies substantially decreased between the two ten-year periods. table . closeness between alternative therapies, - : number of co-occurrence in the medical journal articles (%) - acupuncture acupressure . chiropractic . . homeopathy . . . massage therapies . . . . naturopathy . . . . . reflexology . . . . . . tai chi/qi gong . . . . . . . therapeutic touch . . . . . . . . - acupuncture acupressure . chiropractic . . homeopathy . . . massage therapies . . . . naturopathy . . . . . reflexology . . . . . . tai chi/qi gong . . . . . . . therapeutic touch . . . . . . . . difference acupuncture acupressure . chiropractic . . homeopathy . . . massage therapies . . . . naturopathy . . . - . . reflexology . . . . . . tai chi/qi gong . . . . . . . therapeutic touch . . . . . . . . figure . closeness centrality of alternative therapies, - - - a therapy is more tightly associated with other therapies in the same subcategory than with therapies in different subcategories. for instance, the average closeness scores were . % for therapies in alternative systems of medical practice and . % in manual healing methods ( - ), whereas the average score for pairs of therapies in different subcategories (e.g., acupuncture-chiropractic) was . %. it is notable that closeness scores differ even within the same subcategory. table . presents average closeness scores of three groups of therapies: ( ) therapies exclusively in the alternative system category (acupuncture, homeopathy, and naturopathy), ( ) therapies that are members of the two subcategories (acupressure, massage, and taichi/qigong), and ( ) therapies exclusively in the manual healing method category (therapeutic touch, reflexology, and chiropractic). in the subcategory of alternative systems of medical practice, for instance, there are two groups of therapies, one with a pure category and the other with a mixed category. the average closeness score for acupuncture, homeopathy, and naturopathy was greater than the average score for acupressure, massage, and taichi/qigong ( . vs. . for the - period and . vs. . for the - period). interestingly, it seems that acupuncture, homeopathy, and naturopathy became substantially closer to acupressure, massage, and taichi/qigong. the average closeness score for pairs of therapies in the two groups (i.e., closeness between one therapy in one group and another therapy in the other group, such as acupuncture- acupressure, homeopathy-massage etc.) increased from . to . in the two-ten year periods. in the manual healing subcategory, therapeutic touch, reflexology, and chiropractic became even closer to acupressure, massage, and taichi/qigong. the difference in closeness between the two groups of therapies (e.g., therapeutic touch- acupressure, reflexology-massage etc.) was . (from . to . ). table . closeness scores by subgroups of alternative therapies, - (%) - acupuncture, homeopathy, and naturopathy . acupressure, massage, and taichi/qigong . . therapeutic touch, reflexology, and chiropractic . . . - acupuncture, homeopathy, and naturopathy . acupressure, massage, and taichi/qigong . . therapeutic touch, reflexology, and chiropractic . . . difference acupuncture, homeopathy, and naturopathy . acupressure, massage, and taichi/qigong . . therapeutic touch, reflexology, and chiropractic . . . . analytic procedure i used cross-sectional time-series logit models to predict the likelihood that a hospital will adopt an alternative therapy. logit regression analyses are appropriate when the dependent variable is a dichotomous (adoption or non-adoption). i used random effects since typical fixed effects models for longitudinal data cannot estimate effects for hospitals that showed no variation in my key variables, such as status, teaching, and ownership, during the study period. the omission of these variables from the models would lead to undesirable misspecification. i first built a baseline model of the effects of control variables, such as the focal hospital’s organizational characteristics (such as age and size) and contextual forces (such as mass media exposure). i then added independent variables—measures because all covariates were lagged by one period in the analysis to enhance causal explanation, the dataset consists of time points ( dropped). of prior adoptions of alternative therapies which were constructed differently according to theoretical interests of this study. these variables are discussed below in more detail. the modeling procedure helped me to demonstrate whether or not the diffusion of other similar therapies influences the adoption of the focal therapy after controlling for idiosyncratic characteristics of hospitals and contextual forces. table . shows the measures for all study variables. table . variables and their measures variable measure adoption formal incorporation of alternative therapies along with other treatment services within a focal hospital ( = yes, = no) categorical characteristics therapies: same category number of hospitals (except a focal hospital) that adopted any therapies (except a focal therapy), regardless of the categorical position of each therapy; included all eight therapies except the focal therapy therapies: same sub-category number of hospitals (except a focal hospital) that adopted any therapies (except a focal therapy) in the same sub- category of the focal therapy; included homeopathy, naturopathy, acupressure, massage, and taichi/qigong, when acupuncture was the focal therapy therapies: non-ambiguous category number of hospitals (except a focal hospital) that adopted any therapies (except a focal therapy) exclusively in the same sub-category of the focal therapy; included homeopathy and naturopathy, when acupuncture was the focal therapy therapies: ambiguous category number of hospitals (except a focal hospital) that adopted any therapies sharing another sub-category; included acupressure, massage, and taichi/qigong relational characteristics alliance ties number of other hospitals offering alternative therapies (except a focal therapy) and sharing the same alliance ties system ties number of other hospitals offering alternative therapies (except a focal therapy) and sharing the same system ties structural equivalence number of other hospitals offering alternative therapies (except a focal therapy) and sharing the same block high status number of high-status hospitals that adopted alternative therapies (except a focal therapy) table . (continued) variable measure prior adoption (focal therapy) traditional contagion effects, measured by the number of other hospitals that adopted a focal therapy in focal and contiguous counties density number of hospitals in focal and contiguous counties organizational characteristics age number of years since a hospital’s founding size: staffed bed number of beds set up and staffed for use size: outpatient number of outpatient visits growth: staffed bed change in beds over a one-year period growth: outpatient change in outpatient visits over a one-year period prior adoption (focal hospital) dummy variable coded as if a focal hospital had adopted any alternative therapies. service scope number of treatment services that a hospital reported in the aha annual survey data files status dummy variable coded as for high-status hospitals that included both the elite hospitals identified by the norc and those that had ties (i.e., alliance and system membership) to the elite hospitals ownership hospital ownership is for-profit ( = yes, = no) or not-for- profit ( = yes, = no); public is an omitted category teaching dummy variable, coded as if the focal hospitals were members of the council of teaching hospitals (coth) contextual characteristics mass media exposure number of articles about a focal alternative therapy appeared in the following popular magazines and newspapers total population total population of focal and contiguous counties % population > percent of population age or older in focal and contiguous counties % asian population percent of asian population including chinese, filipino, japanese, asian indian, korean, vietnamese, cambodian, hmong, laotian, and thai accreditations number of professional accreditations of a focal hospital clinical evidence cumulative number biomedical journal articles for a focal therapy * all variables are measured for each year. . measurement of variables and data sources . . dependent variable the dependent variable is the adoption of each of the nine alternative therapies by hospitals. by adoption, i mean the formal incorporation of alternative therapies along with other treatment services within a focal hospital. according to this definition, the referral to off-site free-standing alternative care centers not directly managed by the focal hospital was not regarded as adoption. similarly, irregular workshops for alternative medicine that did not involve patient encounters were excluded as well. the american hospital association (aha) annual survey data files ( - ) provided an initial listing of hospitals offering any alternative therapies (n= ). however, this data source did not specify exactly which alternative therapies were provided and when hospitals adopted such therapies. thus, i conducted a survey to verify the listing and collect additional data about the types of therapies and dates of adoption, in collaboration with the survey research institute (sri) at cornell. since this survey was by nature retrospective, the information obtained from the survey could have had some problems of accuracy. this issue of inaccurate responses might arise especially when therapies were adopted in the long past and/or if the respondents were newly hired. thus, it was critical to identify the person who was most knowledgeable enough to provide accurate answers. using an initial listing of hospitals offering any alternative therapies compiled from the aha survey, i initially contacted all sample hospitals and identified potential respondents who would complete the survey. among hospitals, i obtained email addresses of potential respondents. the email addresses were used for the web- based survey administered by the survey research institute. the remaining hospitals refused to disclose emails ( ) or were initially unable to identify the right persons to contact ( ). for the hospitals that refused to provide emails, i obtained necessary information through fax or phone from hospitals. additional contacts revealed that the hospitals that could not locate the potential respondents were mostly those that have not formally adopted alternative therapies (e.g., external referral services, irregular workshop by contract therapists and a few physicians’ exploratory practice for a short time). my field interviews also showed that when answering the aha survey question about alternative medicine, the respondents sometimes included non-alternative therapies, such as support groups, smoking cessation program, women’s health services, and fitness services to name a few. this might be due to the fact that the aha survey instruction did not include a complete list of alternative therapies. without a complete list, respondents might have used discretion in determining whether they provided any alternative therapies. this seemed to inflate the number of hospitals offering alternative medicine reported by the aha survey. for the hospitals whose emails were available, the web-based survey was launched with its corresponding invitations on october nd, and was followed by two reminder emails to non-respondents on october th and th. the final reminder was sent on november th and data collection ended on november th. only people completed the survey, yielding a response rate of . %. i contacted later the non-responding hospitals and obtained relevant information from hospitals via direct site visits and/or phone interviews. sixteen hospitals out of the remaining hospitals that did not answer survey questions turned out that they did not provide any of the nine therapies that my research focused on. three hospitals refused to provide answers. taken together, the total number of hospitals identified as providing alternative therapies in my research was . table . presents the number of adoption events by the hospitals between and . table . number of hospitals that adopted alternative therapies by year year acupuncture acupressure chiropractic homeopathy massage naturopathy reflexology taichi/qigong therapeutic touch total . . independent variables for each therapy studied, i examined the effect of prior adoptions of other alternative therapies on the focal hospital’s adoption. although the effect of prior adoptions has been typically measured by counting the number of prior adopters, i considered two important measurement issues in constructing the count measure in the current empirical context. first, what should be counted? since one hospital can adopt more than one therapy, the actual number of alternative therapies offered by each hospital should be considered. two approaches are available. the first approach is to count the number of hospitals that adopted alternative therapies. counting the number of hospitals, however, may not exactly capture the effect of prior adoptions. according to this approach, for instance, a hospital x adopting therapies and another hospital y offering one therapy are assumed to have the same impact on the focal hospital z’s adoption rate of alternative medicine. the second approach is to count the number of adoption decisions made by any hospitals. this approach suggests that x is ten times more salient than y in the influence on z’s adoption of alternative medicine. this approach is based on a questionable assumption that the influence of x is the same as that of ten different hospitals each of which provides one therapy. insofar as z regards ten different hospitals as more influential than one, this approach exaggerates the effect of prior adoptions. a more reasonable assumption is that the actual effect of prior adoptions would be somewhere between two extremes captured by the measurement approaches. i report in the next chapter results of analyses based on the first approach for simplicity, but also provide results based on the second approach for comparative purposes. second, who should be counted? since contagion involves some form of interaction and influence among organizations, it is unreasonable to assume that all hospitals in new york state simultaneously affect and are affected by each other. for instance, the mutual awareness and interaction between hospitals in ithaca and elmira would be reasonably high, while the same level of influence would be unlikely between hospitals in buffalo and new york city unless they are directly connected through network relations. without assuming such network, researchers often suggest that “proximity provides the best summary of the likelihood of mutual awareness and interdependence” (strang and soule : ). thus, geographically localized measures seemed appropriate for testing the hypotheses that assumed no network relations (all hypotheses except hypotheses and ). i constructed a measure of prior adoptions by counting the total number of hospitals in the focal county (where the focal hospital is located) and all contiguous counties (see d’aunno, succi and alexander for a similar approach). i included hospitals in contiguous counties since hospitals often provide services to patients from neighboring counties. count data were obtained from the survey i conducted in collaboration with sri. the specific methods of constructing independent variables varied according to the hypotheses being tested. figure . shows the scope of therapies included in the count measures when the focal therapy is acupuncture. measures of prior adoptions for hypotheses , , and were based on the different therapies, with the scope of therapies for hypothesis and being the narrowest. specifically a count measure of prior adoptions for hypothesis included hospitals (except focal hospitals) that adopted any of the eight therapies, regardless of each therapy’s categorical position (therapies: same category). hypothesis examined the effect of other hospitals offering therapies in the same sub-category. thus, when a focal therapy was acupuncture, the count measure of prior adoptions included hospitals that adopted homeopathy, naturopathy, acupressure, massage therapies, and taichi/qigong in the subcategory of alternative systems of medical practice (therapies: same sub-category). the measure for hypothesis focused on therapies with a clear categorical identity. since acupressure, massage therapies, and taichi/qigong have double membership, their categorical positions are ambiguous. hence i excluded these therapies in calculating the prior adoption measure for hypothesis (therapies: non-ambiguous category). in contrast, the measure for hypothesis included the three therapies to test for the influence of categorically ambiguous therapies (therapies: ambiguous category). hypothesis examined the adoption of categorically ambiguous therapies. thus, for example, the dependent variable for hypothesis could be the adoption of acupressure by a focal hospital. when acupressure was a focal therapy, the measure of prior adoptions was the number of hospitals that adopted any of the eight therapies other than acupressure. figure . measuring prior adoptions (focal therapy: acupuncture) hypothesis drew on network structural arguments to examine if information cues about the diffusion of some alternative therapies moved faster through relational manual healing methods h alternative systems of medical practice acupuncture (focal therapy) reflexology chiropractic massage therapies tai chi/qi gong therapeutic touch acupressure h homeopathy naturopathy h ties and thus facilitated the focal hospital to adopt other alternative medicine. this variable was constructed using alliance and multihospital system ties available from the aha survey data (see westphal et al. ). ties to alliance partners who adopted alternative therapies were measured as a count variable equal to the number of alliance partners who adopted alternative therapies (other than the focal therapy) prior to the focal hospital. since the number of ties was counted for multiple therapies, this measure was calculated as follows: ∑∑∑ ≠ ≠ = nm n ji j k jnkimkim yxn , where nim refers to the network size (number of ties) of hospital i at risk of adopting the focal therapy m; ximk is if the focal hospital participates in alliance k, otherwise ; yjnk is if other hospital j already offering the therapy n participates in alliance k, otherwise . in other words, for a hospital at risk of adopting the focal therapy, this measure represents the total number of other hospitals offering alternative therapies (but not the focal therapy) and sharing the same alliance network (alliance). the variable for ties to system was measured in a similar way (system). hypothesis used another network measure—structural equivalence. as a way of identifying structurally equivalent hospitals, i focused on the similarities between the patterns of conventional biomedical therapies offered by each pair of hospitals. this measure was constructed using a blockmodel analysis, which partitions networks based on hospitals’ common patterns of relations with all other hospitals in the network (i.e., structural equivalence). this model could identify nominal groups without other information about attributes of hospitals and regardless of whether those hospitals were directly linked or not (white et al. ; gerlach ; wasserman and faust ). using the aha survey data, i first constructed an n×l matrix h, where hij = if a hospital i offered a medical service j, and hij = otherwise. i then performed the matrix multiplication of hh’ (h and the transposed matrix of h) to create an n×n matrix s, where sij = if hospitals i and j provided the same medical service and otherwise. based on this matrix, i identified structural equivalence among hospitals using an iterated correlation algorithm, called concor (breiger, boorman, and arabie ). concor identifies groups of actors with similar relationships and divides them into blocks, within which all hospitals are structurally equivalent. i used ucinet (borgatti et al. ), a widely used network analytical program, to perform this algorithm. after identifying blocks, i constructed a count measure of hospitals that adopted alternative therapies and were in the same block (structural equivalence). this measure was created in the same way that the measure of ties to multihospital system was constructed. hypothesis suggests that the salience of informational cues about other therapies is influenced by the adoption of high-status hospitals. drawing upon the recent status literature that emphasizes a small number of empirical distinctions of status groups, such as higher, middle, and lower status (phillips and zuckerman ; deephouse and suchman ), i identified the group of high-status hospitals and counted the number that adopted alternative therapies in the following two-step process. first, a group of high-status hospitals was identified using hospital rank data available from the national organization for research and computing (norc) at the university of chicago. the norc annually identified - hospitals with the highest rank scores based on a survey using a stratified random sample of physicians, and the list of elite hospitals was published by the usnews.com (america’s best hospitals). second, since the total number of elite hospitals per year was less than and a small number of hospitals in new york state were listed, i included a hospital that had ties (i.e., alliance and system membership) to the elite hospitals as a member of the high-status group. this approach matches the concept of status introduced by podolny ( , ), who suggested that high status is derived from affiliations with prominent actors. i constructed a count measure of hospitals that adopted alternative therapies and that were in the high-status group (high status). . . control variables all models in the analyses included the number of other hospitals that adopted a focal therapy to control for the effect of traditional contagion. for example, when i analyzed the adoption of acupuncture, i included a count measure of other hospitals that adopted acupuncture in focal and contiguous counties (prior adoption: focal therapy). all models also included a density variable, measured as the total number of hospitals in the same geographical areas (density). when independent variables were based on non-geographical boundaries, such as alliances and systems (hypothesis ) and blocks (hypothesis ), prior adoption: focal therapy and density were matched to the same boundaries. for instance, a density variable for hypothesis , which examined ties to multihospital systems, was constructed to include the total number of hospitals in the same multihospital system. to rule out other alternative explanations, i also included two sets of control variables in all models: organizational and contextual characteristics. first, i controlled for organizational characteristics since the focal hospital’s adoption could be driven by its internal needs and idiosyncratic features. the organization-level control variables included age, size, growth, past adoption of alternative therapies, service scope, status, ownership, and teaching. second, i used a set of variables that measured contextual characteristics of the focal hospitals. the danger of common contextual effects for contagion between actors has been well documented (e.g., coleman et al. ; haunschild and miner ; van den bulte and lilien ). these studies suggest that mutual awareness and perceptions about innovations may not be exclusively influenced by contagion between actors; rather common contextual forces, such as mass media exposure, may induce both prior and potential adoptions even when no direct interaction and mutual influence exist between actors. thus, failure to control for the contextual forces may induce spurious relationships. this issue of common contextual forces applies to the current research context: if unobserved factors affect prior adoptions of one alternative therapy and adoptions of the other therapy, my argument about contagion between practices cannot hold. as contextual forces, i examined mass media exposure, market demand, normative influence of conventional/alternative medicine, and cumulative clinical evidence. organizational characteristics: organizational age has been studied as a major factor affecting rates of organizational change (e.g., delacroix and swaminathan ). age was measured as the number of years since a hospital’s founding (age). organizational size has also been suggested to influence change (scott et al. ). i used a standard measure of size for hospitals—the number of staffed beds (size: staffed bed). i also used an alternative measure of size, the number of outpatient visits (size: outpatient), because my field interviews suggested that most alternative therapies were provided to outpatients, rather than inpatients. the adoption decision of a hospital’s treatment services may be driven by its growth. thus i included two measures of growth based on the two size measures—growth: staffed bed and growth: outpatient. granovetter ( ) also considered this issue by providing an extreme example: “individuals who appear to react to one another are actually all responding to an external influence.” in his quote from weber ( : ): “thus, if at the beginning of a shower a number of people on the street put up their umbrellas at the same time, this would not ordinarily be a case of action mutually oriented to that of each other, but rather of all reacting in the same way to the like need of protection from the rain.” however, this does not necessarily mean that there is no social contagion. as granovetter added, “there are surely some whose umbrella behavior is determined in part by that of others around them” (p. ). i also controlled for past adoption of alternative therapies (prior adoption: focal hospital). past adoptions can encourage focal organizations to adopt similar practices. for instance, washington and ventresca ( ) showed that colleges that adopted football teams were more likely to adopt lacrosse and hockey teams than other schools that did not have such experience. sanders and tuschke ( ) also found that the adoption of accounting practice positively affects the subsequent adoption of stock option pay. past adoption was measured using a dummy variable coded as “ ” if the focal hospital had adopted any alternative therapies. patients and their physicians tend to do “one-stop shopping” at hospitals providing a wide array of services (succi, lee, and alexander ). insofar as alternative therapies are viewed as new medical practices that can help hospitals make a larger, richer mix of treatment services, current service scope will affect rates of the focal hospital’s adoption of alternative therapies. thus, i included the number of treatment services that hospitals reported in the aha annual survey data files (service scope). status was measured by a dichotomous variable coded as “ ” for high-status hospitals that included both the elite hospitals identified by the norc and those that had ties (i.e., alliance and system membership) to the elite hospitals (status). hospital ownership was measured by dummy variables representing public (an omitted category), private for-profit (ownership: for-profit), and private not-for-profit ownership (ownership: not-for-profit). finally, teaching hospitals were measured by a dummy variable, coded as “ ” if the focal hospitals were members of the council of teaching hospitals (coth) in a note that these studies are different from the current research since they focus on the adoption of different practices by the same organization, whereas my focus is on the adoption of different practices by different organizations. given year (teaching), a common definition of a major academic teaching institution. teaching status seems important in the adoption of alternative therapies in two opposite ways. on the one hand, major academic teaching hospitals acquire prestige by developing new medical research programs to train students in the most recent medical practices and new knowledge, such as alternative therapies. on the other hand, the mission in teaching hospitals is typically to disseminate well-developed standards of practice and to encourage compliance with clinical protocols and external reviews, thereby discouraging the adoption of less legitimate medical treatments. contextual characteristics: the critical role of mass media in the diffusion of new practices and structure has been well documented (e.g., abrahamson , ; see strang and soule for a review). i measured the effect of mass media as the number of articles about alternative therapies appeared in the following popular magazines and newspapers in a given year (mass media exposure): new york times, newsweek, wall street journal, washington post, and usa today. market demand plays a key role in affecting the behavior of hospitals. in general, local markets with low market demand cannot provide sufficient resources for all hospitals that depend on the same resource needs (hannan and freeman , ). insufficient consumer demand for hospitals’ services may lead to the adoption of new practices which are believed to attract new patients. demand was measured by three indicators: total population (total population), percent of population age or older (% population > ), and percent of asian population (% asian population). for the measure of % asian population, i included the following ethnic groups: chinese, filipino, japanese, asian indian, korean, vietnamese, cambodian, hmong, laotian, and thai. following d’aunno et al. ( ), i created these measures based on the values of the focal and contiguous counties. these data were available from the area resource file provided by the national center for health workforce analysis. professionals are often viewed as a critical source of normative influence since they reconstruct cognitive, normative frameworks that define areas within which they claim jurisdiction and seek to exercise control (abbott ; freidson ). highly organized professions can exert stronger pressures on hospitals than less organized occupational groups. i used the number of accreditations that a hospital had in a given year as a measure of the normative influence of conventional medicine (accreditations). major accrediting agencies, such as the joint commission on accreditation of healthcare organizations, exert normative influence from the perspective of conventional medicine (ruef and scott, ). for instance, these organizations have very strict standards that strongly recommend hospitals not to provide any therapies that do not have biomedical evidence for therapeutic efficacy. since conclusive evidence for efficacy is not available yet for some alternative therapies, hospitals adopting the therapies may be subject to scrutiny and the potential loss of accreditation. thus i expected that the greater the number of accreditations that a focal hospital had, the less likely the hospital would adopt alternative therapies. the data for this measure was available from the aha data files. if hospitals tend to adopt medical therapies that have strong biomedical evidence for therapeutic efficacy, the increase in cumulative evidence for an alternative therapy will have a positive effect on the adoption rate of the therapy by hospitals. i measured clinical evidence as the cumulative number of biomedical journal articles for each therapy (clinical evidence). when a model examined the adoption of acupuncture as a dependent variable, i included in the model a measure based on the cumulative number of journal articles that showed clinical evidence for acupuncture. this data was available from medline. chapter results for simplicity, this chapter first focuses on the adoption of acupuncture by hospitals when presenting results of analyses in sections . and . . the chapter then reports results of additional analyses in section . to show comparisons across therapies, such as acupuncture, therapeutic touch, and acupressure – the three therapies that represent three different categorical positions in figure . . the chapter also provides other results of analyses to show whether contagion across practices operates even among conventional therapies. all independent variables were based the number of hospitals offering alternative therapies, not the number of adoption decisions. for comparison purposes, section . shows the summary results based on the alternative variable construction (i.e., number of adoption decisions). table . presents summary statistics and a correlation matrix for all variables. it is worth noting that some independent variables are significantly associated with measures of mass media exposure and market demand, suggesting the importance of contextual characteristics. in terms of the strength of association, mass media exposure had a weaker effect than market demand, measured by percent of asian population, percent of population age or older, and total population in the same geographical area. among the three measures of market demand, percent of asian population was highly and positively correlated with prior adoptions of other therapies by hospitals. since it is unlikely that the adoption of alternative therapies by hospitals affected increase in asian population, the association may imply that the adoption of alternative therapies by hospitals was significantly driven by asian population, presumably the main users of traditional oriental medicine. the negative association between % population > and variables of prior adoptions appears to indicate that alternative therapies are more popular among younger generation. table . descriptive statistics: means, standard deviations, and correlations variables mean s.d. adoption . . age . . . size (staffed bed) . . . . size (outpatient) . . . growth (staffed bed) - . . . - . . - . growth (outpatient) . . . . . . . prior adoption (focal hospital) . . . . . . - . - . service scope . . - . - . . - . . . . status . . . . . . . . . - . ownership (not-for-profit) . . . . - . . . . . - . . ownership (for-profit) . . - . - . - . - . . - . - . . - . - . teaching . . . . . . - . . . - . . - . - . mass media exposure . . . . - . . . - . . - . . . - . . total population . . . . - . . . . . - . . . % population > . . - . - . - . - . . . - . - . - . . - . - . % asian population . . . . . . - . . . . . - . . . accreditations . . . . . . . . . - . . . - . . clinical evidence . . . . - . . . - . . - . . . - . . prior adoption (focal therapy) . . . . . . . - . . - . . - . . . therapies: same category . . . . . . . - . . - . . - . . . therapies: same sub-category . . . . . . . - . . - . . - . . . therapies: non-ambiguous . . . . . . . - . . - . . - . - . . alliance ties . . . . . . . - . . - . . . - . . system ties . . . . . . - . - . . - . . - . - . . structural equivalence . . . . - . . . - . . - . . . - . . high status . . . . . . . - . . - . . - . . . table . (continued) correlations total population . % population > - . - . % asian population . . - . accreditations . . - . . clinical evidence . . - . . . prior adoption (focal therapy) . . - . . . . therapies: same category . . - . . . . . therapies: same sub-category . . - . . . . . . therapies: non-ambiguous . . - . . . . . . . alliance ties . . - . . . . . . . . system ties . . - . . . . . . . . . structural equivalence . . - . . . . . . . . . . high status . . - . . . . . . . . . . . note: p< . where |r|> . . categorical positions and contagion table . provides the results of maximum-likelihood logistic regression analyses for categorical characteristics hypotheses (h - ). all models are structured in the order of hypotheses developed in chapter . model provides the baseline model that includes control variables. model - include three measures for categorical characteristics hypotheses—the number of prior adoptions of eight therapies other than acupuncture (therapies: same category), the number of prior adoptions of five therapies in the same sub-category—homeopathy, naturopathy, acupressure, massage, taichi/qigong (therapies: same sub-category), and the number of prior adoptions of two therapies exclusively in the same sub-category—homeopathy and naturopathy (therapies: non-ambiguous category). model - test for effects of prior adoptions of three categorically ambiguous therapies—acupressure, massage, and taichi/qigong (therapies: ambiguous category). overall, the results provide strong evidence for my argument that the diffusion of a set of practices influences the adoption of other associated practices, if they are grouped in the same category. model in table . shows that prior adoptions of eight therapies (excluding acupuncture) by hospitals significantly predict the adoption of acupuncture by the focal hospital, even after controlling for the effect of traditional contagion arguments—i.e., the number of other hospitals that adopted acupuncture (prior adoption: focal therapy). the estimated coefficient of therapies: same category suggests that other things being equal, each additional increase in the number of hospitals offering any eight therapies increases the odds that the focal hospital will adopt acupuncture by a factor of . . this was calculated using the exponentiated coefficient (odds ratio) of the variable, therapies: same category ( . ). this result provides support for hypothesis . table . cross-sectional time-series logit analysis: adoption of acupuncture m m m m m m age . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) size (staffed bed) - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) size (outpatient) . . . - . . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) growth (staffed bed) - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) growth (outpatient) . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) prior adoption (focal hospital) . *** . *** . *** . *** . *** . *** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) service scope - . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) status - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ownership (not-for-profit) . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ownership (for-profit) - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) teaching . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) mass media exposure - . . . - . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) total population - . - . - . - . ** - . - . ** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) % population > - . *** - . *** - . *** - . *** - . *** - . *** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) % asian population . - . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) accreditations . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) clinical evidence . - . - . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) prior adoption (focal therapy) - . - . ** - . * - . ** - . - . *** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) density . . * . *** . * . *** ( . ) ( . ) ( . ) ( . ) ( . ) therapies: same category . ** ( . ) therapies: same sub-category . * ( . ) therapies: non-ambiguous category . ** . ** ( . ) ( . ) therapies: ambiguous category . . ( . ) ( . ) constant . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) wald x . . . . . . degrees of freedom standard errors in parentheses * significant at % ** significant at % *** significant at % model examines the effect of categorical similarity, whereas model investigates the influence of categorical ambiguity. model shows that the measure of prior adoption of other therapies in the same sub-category has a positive, significant effect on the adoption of acupuncture (therapies: same sub-category). it thus provides support for hypothesis which suggested that categorically similar therapies have positive influence on the adoption of acupuncture. model indicates that the coefficient of therapies: non-ambiguous category is positive and significant. the result provides support for hypothesis , which predicted that the number of other hospitals that adopted therapies exclusively in one sub-category would be positively associated with the focal hospital’s adoption of the other therapy in the same sub- category. model and provide further support for the categorical ambiguity argument. unlike prior adoption of other therapies exclusively in the same sub-category tested in model , prior adoption of other therapies sharing another sub-category—therapies: ambiguous category (acupressure, massage, and taichi/qigong) in model was not significant. this result provides support for hypothesis and suggests that a kind of social penalty in the adoption process may operate against the therapies whose categorical identities are ambiguous and inconsistent (zuckerman ). model shows that the categorical ambiguity argument remained significant when two variables were included simultaneously—the one with therapies exclusively in the same sub-category (homeopathy and naturopathy) and the other with therapies that share another sub-category (acupressure, massage, and taichi/qigong). only the measure of prior adoption of therapies exclusively in the same sub-category (therapies: non-ambiguous category) was significant. taken together, the results suggest that the influence of multiple therapies on the adoption of acupuncture is largely driven by categorically non-ambiguous therapies. table . cross-sectional time-series logit analysis: adoption of acupressure m m m m m m m age . . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) size (staffed bed) - . * - . ** - . ** - . ** - . ** - . ** - . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) size (outpatient) . . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) growth (staffed bed) - . - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) growth (outpatient) . . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) prior adoption (focal hospital) . *** . *** . *** . *** . *** . *** . *** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) service scope . * . * . * . * . * . * . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) status - . - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ownership (not-for-profit) - . - . - . - . - . . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ownership (for-profit) - . - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) teaching . * . * . * . * . * . * . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) mass media exposure . * . * . . * . . . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) total population - . ** - . ** - . ** - . * - . ** - . ** - . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) % population > - . - . - . - . - . - . * - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) % asian population . ** . ** . ** . ** . ** . ** . ** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) accreditations - . - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) clinical evidence - . * - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) prior adoption (focal therapy) . . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) density . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) therapies: same category - . ( . ) therapies: same sub-category - . (alternative systems of medical practice) ( . ) therapies: same sub-category - . (manual healing methods) ( . ) therapies: ambiguous category - . . . (massage, taichi/qigong) ( . ) ( . ) ( . ) therapies: non-ambiguous category - . (acupuncture, homeopathy, naturopathy) ( . ) therapies: non-ambiguous category - . (chiropractic, reflexology, therapeutic touch) ( . ) constant . . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) wald x . . . . . . . degrees of freedom standard errors in parentheses * significant at % ** significant at % *** significant at % table . provides results for hypotheses a and b, which investigated the effect that other therapies have on categorically ambiguous therapies—the flip side of categorical ambiguity argument. the hypotheses were tested using a different dependent variable—the adoption of acupressure. model included controls. model examined the influence of eight other therapies on the adoption of acupressure (therapies: same category). model and included five therapies in the sub- categories (therapies: same sub-category); due to acupressure’s double membership of categories, both sub-categories (alternative systems of medical practice and manual healing methods) were examined in the models. model - examined other therapies for complete comparisons across different sub-groups of therapies. model examined the effect of massage and taichi/qigong—the two other therapies whose categorical identity is ambiguous. model included two groups of therapies that make the complete sub-category of alternative systems of medical practice: (a) massage and taichi/qigong and (b) acupuncture, homeopathy, and naturopathy. similarly model included two variables that decompose the sub-category of manual healing methods into two groups of therapies: (a) massage and taichi/qigong and (b) chiropractic, reflexology, and therapeutic touch. these models provide a complete analysis for the argument that categorically ambiguous therapies have double membership of sub-categories (e.g., acupressure) which may serve as double sources of informational cues and legitimacy transfer (hypothesis a). the competing hypothesis b predicted that the effect of other therapies on categorically ambiguous therapies would be weak. the results provide support for hypothesis b; no coefficients in all models were significant, suggesting that prior adoptions of other therapies do not significantly explain the adoption rates of acupressure. . relational positions and contagion table . includes four models relational characteristics hypotheses—alliances, systems ties, structural equivalence, and high-status. model and in table . test for hypothesis , which predicted that prior adoptions of other therapies are salient for the adoption of acupuncture when hospitals are connected through network. the results provide partial support; the coefficient of relational characteristics variable in model (alliance) was significant, but the coefficient of system in model was not. one speculation is that although hospital alliances and systems may facilitate the flow of information between member organizations, the formal implementation of alternative medicine programs may require greater autonomy. on the one hand, hospital alliances involve contractual arrangements for the provision of services and do not impose any further constrains on the decision making of member hospitals. on the other hand, system memberships bind hospitals together under common ownership and may provide universal mandates that limit autonomy. model examines if informational cues conducive to contagion across practices spread fast between structurally equivalent hospitals (hypothesis ). the results suggest that the number of structurally equivalent hospitals that offered alternative therapies was influential in the adoption decision of acupuncture by a focal hospital. other things being equal, each additional increase in the number of hospitals offering any eight therapies increases the odds that the focal hospital will adopt acupuncture by a factor of . if the hospitals are structurally equivalent. model shows the results for hypothesis , which predicted that the salience of informational cues may be influenced by high-status adopters. the results indicate significant influence of the high-status hospitals; when the number of high-status hospitals that offered acupuncture increases by one, the odds of adopting acupuncture increase by a factor of . . table . cross-sectional time-series logit analysis: adoption of acupuncture—relational characteristics hypotheses alliance (m ) system (m ) se (m ) status (m ) age . . . . ( . ) ( . ) ( . ) ( . ) size (staffed bed) - . - . - . - . ( . ) ( . ) ( . ) ( . ) size (outpatients) . . . . ( . ) ( . ) ( . ) ( . ) growth (staffed bed) - . - . - . - . ( . ) ( . ) ( . ) ( . ) growth (outpatients) . . . . ( . ) ( . ) ( . ) ( . ) prior adoption (focal hospital) . *** . *** . *** . *** ( . ) ( . ) ( . ) ( . ) service scope - . . . - . ( . ) ( . ) ( . ) ( . ) status - . - . - . - . ( . ) ( . ) ( . ) ( . ) ownership (not-for-profit) . - . . . ( . ) ( . ) ( . ) ( . ) ownership (for-profit) - . - . - . - . ( . ) ( . ) ( . ) ( . ) teaching . * . . . ( . ) ( . ) ( . ) ( . ) mass media exposure . . - . *** . ( . ) ( . ) ( . ) ( . ) total population - . - . - . - . ( . ) ( . ) ( . ) ( . ) % population > - . *** - . *** - . *** - . ** ( . ) ( . ) ( . ) ( . ) % asian population . . . - . ( . ) ( . ) ( . ) ( . ) accreditations . . . . * ( . ) ( . ) ( . ) ( . ) clinical evidence . - . . *** - . ( . ) ( . ) ( . ) ( . ) prior adoption (focal therapy) - . ** - . - . *** - . ( . ) ( . ) ( . ) ( . ) density - . . . *** . ( . ) ( . ) ( . ) ( . ) relational characteristics . ** . . *** . * ( . ) ( . ) ( . ) ( . ) constant . . - . . ( . ) ( . ) ( . ) ( . ) wald x . . . . degrees of freedom * significant at % ** significant at % *** significant at % . additional analysis . . comparisons across therapies tables . shows comparisons across three therapies, including acupuncture, therapeutic touch, and acupressure that represent three different categorical positions. acupuncture and therapeutic touch are organized into categorically non-ambiguous sub-categories, whereas acupressure is categorically ambiguous due to its dual categorical membership. the results in table . show interesting differences in the effects of prior adoption among the three therapies. first, results of categorical characteristics hypotheses for acupuncture and therapeutic touch (h - ) are very similar (all significant for h - and not significant for h ), but sharply contrast with the results for acupressure. the results show additional support for the proposition that prior adoptions of alternative therapies by hospitals enhance diffusion rates of other therapies especially when the categorical identity of therapies is not ambiguous. second, there is some evidence for the influence of relational linkages. results of relational characteristics hypotheses (h - ) indicate that the role of relational linkages in the dissemination of alternative therapies for contagion processes varies across individual therapies. alliance ties, structural equivalence, and high status play a significant role in affecting the adoption of acupuncture, whereas no relational characteristics of hospitals are significant in predicting the adoption of therapeutic touch. for the adoption of acupressure, alliance ties have significant influence, while structural equivalence and high status do not have such influence. the difference in the effects of prior adoption among the three therapies is more evident for categorical characteristics hypotheses than relational characteristics hypotheses. this should not be surprising because the three therapies were selected on the basis of categorical positions of each therapy. table . comparisons across acupuncture, therapeutic touch, and acupressure hypothesis therapy therapies in a broad category therapies in a sub-category therapies only in one sub-category therapies in two sub-categories alliance ties structural equivalence high status h h h h h h h acupuncture + + + + + + therapeutic touch + + + acupressure not applicable + note: . this table gives directions of the effect estimates for statistically significant effects only. + indicates positive, significant effects. . the table does not include h , because it examined the adoption of only one therapy (the influence of other therapies on the adoption of acupressure). a result for h -acupressure is not applicable because h examined the influence of therapies in two sub- categories, which include acupressure. . results of acupuncture are based on table . and . . results of therapeutic touch are available in appendix . results of h - for acupressure are based on table . and other results for acupressure are available in appendix . . . contagion among conventional therapies categorization is important because it provides a simplified, classificatory identity to new, multiple practices and further shapes our perception about similarities for the categorized practices. given the fact that alternative medicine serves as a source of legitimacy contagion between therapies, it is interesting to examine if conventional medicine can also serve as a meaningful category for multiple conventional therapies and exert similar influence on the adoption of conventional biomedical therapies/treatments currently available in most conventional medical establishments. if conventional medicine provides a sense of similarity for multiple therapies, we should find that the diffusion of some therapies influences the adoption of other therapies that are organized into the category of “conventional medicine.” if not, the result will inform that conventional medicine is rarely used as a meaningful category to make sense of biomedical treatment services. models - in table . examine if the number of other hospitals that already adopted conventional therapies is positively associated with the adoption of other conventional therapies by focal hospitals. for consistency, i randomly chose nine therapies from the list of treatment services reported by the aha data files. magnetic resonance imaging (mri) was the focal therapy in the models. model and include control variables. the result of model shows that the coefficient of therapies: same category was not significant, providing no support for contagion effects among treatments in conventional medicine. the results suggest the importance of high uncertainty about practices and the presence of categorization systems for making sense of the practices, the conditions that significantly limit the theoretical scope of my arguments. additional analyses for different therapies other than mri showed the same results (not shown). table . cross-sectional time-series logit analysis: adoption of magnetic resonance imaging (mri), - m m m age - . - . - . ( . ) ( . ) ( . ) size (staffed bed) - . . . ( . ) ( . ) ( . ) size (outpatient) . ** . ** . * ( . ) ( . ) ( . ) growth (staffed bed) - . - . - . ( . ) ( . ) ( . ) growth (outpatient) - . - . - . ( . ) ( . ) ( . ) service scope - . ** - . - . ( . ) ( . ) ( . ) status . . . ( . ) ( . ) ( . ) ownership (not-for-profit) . *** . *** . *** ( . ) ( . ) ( . ) ownership (for-profit) - . - . - . ( . ) ( . ) ( . ) teaching . . . ( . ) ( . ) ( . ) prior adoption (focal hospital) . *** . *** . ** ( . ) ( . ) ( . ) total population - . - . . * ( . ) ( . ) ( . ) % population > - . - . - . ( . ) ( . ) ( . ) % asian population . . - . ( . ) ( . ) ( . ) accreditations . ** . ** . ** ( . ) ( . ) ( . ) prior adoption (focal therapy) - . ** . ( . ) ( . ) density - . * ( . ) therapies: same category - . ( . ) constant - . - . - . ( . ) ( . ) ( . ) wald x . . . degrees of freedom standard errors in parentheses * significant at % ** significant at % *** significant at % . . alternative approach to independent variables i have argued that the effect of prior adoptions of other alternative therapies could be measured using two different approaches. the first approach was to count the number of hospitals that adopted alternative therapies, and the second approach was to count the number of adoption decisions made by any hospitals. the distinction between two approaches lies in the possibility that one hospital may adopt multiple therapies. in my empirical data, out of hospitals offered more than one therapy during the study period of - . thus the results reported in section . and . may be sensitive to the different approaches. using the alternative approach (number of adoption decisions), i ran all the models to examine if the main results were robust. table . presents results of analyses for categorical characteristics hypotheses. for comparison purposes across therapies, models included acupuncture (m - ), therapeutic touch (m - ), and acupressure (m - ). all models revealed very similar patterns of significant influence shown in section . . the adoptions of acupuncture and therapeutic touch were significantly influenced by prior adoptions of other therapies, whereas the adoption of acupressure was not predicted by prior adoptions of other therapies. therefore, the results in table . provide additional support for the proposition that prior adoptions of alternative therapies enhance diffusion rates of other therapies, especially when therapies present a coherent categorical identity. table . provides results of relational characteristics hypotheses which examined the influence of network ties (alliance and system), structural equivalence, and high status. models included all three therapies and examined the effects of four variables for each therapy. overall, the results in table . showed limited support for the influence of relational characteristics. structural equivalence plays a significant role in the adoptions of acupuncture and therapeutic touch, while alliance ties influence the adoption of acupressure. table . cross-sectional time-series logit analysis: alternative variables for categorical characteristics (number of adoption decisions) acupuncture therapeutic touch acupressure m m m m m m m m m age . . . . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) size (staffed bed) - . - . - . - . - . - . - . ** - . ** - . ** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) size (outpatient) . . - . . . . . * . * . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) growth (staffed bed) - . - . - . - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) growth (outpatient) . . . . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) prior adoption . *** . *** . *** . *** . *** . *** . *** . *** . *** (focal hospital) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) service scope . . . - . . . . * . * . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) status - . - . - . . . . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ownership . . . . . . - . - . - . (not-for-profit) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ownership - . - . - . - . - . - . - . - . - . (for-profit) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) teaching . . . . . . . * . * . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) mass media exposure . . - . - . - . - . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) total population - . - . - . ** . . - . - . ** - . ** - . ** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) % population > - . *** - . *** - . *** - . - . - . - . * - . * - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) % asian population - . . . - . * - . - . . ** . ** . ** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) accreditations . * . . - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) clinical evidence - . . . . . . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) prior adoption - . ** - . ** - . ** - . *** - . ** - . ** . . . (focal therapy) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) density . ** . ** . *** . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) therapies: . ** . ** - . same category ( . ) ( . ) ( . ) therapies: . * . - . same sub-category ( . ) ( . ) ( . ) therapies: . ** . * - . non-ambiguous ( . ) ( . ) ( . ) constant . . . - . - . - . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) wald x . . . . . . . . . degrees of freedom standard errors in parentheses * significant at % ** significant at % *** significant at % table . cross-sectional time-series logit analysis: alternative variables for relational characteristics (number of adoption decisions) acupuncture therapeutic touch acupressure alliance system se status alliance system se status alliance system se status age . . . . . - . . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) size (staffed bed) - . - . - . - . - . - . - . - . - . * - . ** - . * - . ** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) size (outpatient) . . . . . . . . . ** . ** . . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) growth (staffed bed) - . - . - . - . - . - . - . - . - . * - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) growth (outpatient) . . . . . . . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) prior adoption (focal hospital) . *** . *** . *** . *** . *** . *** . *** . *** . *** . *** . *** . *** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) service scope - . . . - . - . - . . - . . . * . . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) status - . - . - . - . - . - . - . - . - . * - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ownership (not-for-profit) . - . . . . . . . - . - . - . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ownership (for-profit) - . - . - . - . - . - . - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) teaching . * . . . . . . . . . * . . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) mass media exposure - . . - . *** . - . - . - . - . . * . ** - . . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) total population - . - . - . - . . . . . - . - . ** - . ** - . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) % population > - . *** - . *** - . *** - . ** - . - . - . - . - . * - . - . * - . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) table . (continued) acupuncture therapeutic touch acupressure alliance system se status alliance system se status alliance system se status % asian population . . . . - . - . - . - . . . ** . * . ** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) accreditations . . * . . * . . - . . - . - . . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) clinical evidence . - . . *** - . . . . . - . * - . * . - . * ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) prior adoption (focal therapy) - . - . - . *** - . - . - . - . * - . - . - . - . ** . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) density - . . . *** . - . - . * . . . . . * . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) relational characteristics . . . ** . - . - . . * . . * . . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) constant . . - . - . - . - . - . - . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) wald x . . . . . . . . . . . . degrees of freedom standard errors in parentheses * significant at % ** significant at % *** significant at % chapter discussion and conclusion . recapitulation of research the main argument of this research is that insofar as a number of practices belong to a common category, the categorized practices will likely be perceived as similar and associated with each other. given the perceived similarity and association, prior adoptions of individual practices serve as social cues for potential adopters in accepting other practices in the same category. accordingly, the diffusion of one or more practices affects the acceptance of other practices, the process which i refer to as the contagion of legitimacy between practices. categorization provides a critical condition that makes a focal organization sensitive to the spread of other associated practices. the empirical findings of this research revealed that given the presence of categories of alternative medicine, a focal hospital’s adoption decision of an alternative therapy was driven by prior adoptions of other alternative therapies by other hospitals. in addition, the current study explained differential influences that alternative therapies had on adoption rates by concentrating on categorical characteristics of therapies that are subject to adoption by hospitals and relational characteristics of hospitals that adopt therapies. the results of analyses for categorical characteristics of therapies showed that therapies more similar to a focal therapy were salient for the adoption of the focal therapy and that therapies whose categorical positions are ambiguous had a weaker effect on the adoption of focal therapies. the influence of other therapies on categorically ambiguous therapies was also weak or not significant. the results of analyses for relational characteristics of hospitals provided mixed support for the arguments that other therapies were influential in the adoption of the focal therapy when prior adopters of other therapies had network ties to the focal hospital, when prior adopters and the focal hospital were structurally equivalent, and when prior adopters were high-status hospitals. . limitations . . alternative explanations while the results of this research strongly support my main argument about legitimacy contagion, there is some room for alternative explanations of the empirical findings. first of all, although this study at least partially examined the effect of competition on contagion by adding a density measure and using the concept of structural equivalence, it would be worth further exploring the role of local competitive pressures on practice adoption by hospitals. an interesting finding was that the traditional contagion effect (prior adoption: focal therapy) was negative and significant in most models. this negative relationship seemed contrary to the traditional contagion argument, which suggests that prior adopters positively affect the adoption of the same practice by potential adopters. but the way i constructed the prior adoption variable might have influenced this result. i created this variable by counting the number of hospitals in focal and contiguous counties. thus, the negative, significant effect of the traditional contagion argument might have in fact reflected competitive forces in local areas. prior adopters in the same region are more likely to be the very competitors with which potential adopters have to engage in direct, local competition for the same limited pool of patients (baum and haveman ; d’aunno et al. ; freeman and audia ). hospitals that are close-by will try to establish relative desirability and avoid direct competition (fennell ; zuckerman ). the competitive intensity will then discourage hospitals from adopting the same therapies and instead encourages them to differentiate their treatment services from those already provided by their peers. this finding also confirms the argument that competition and mutualism may be complicatedly intermingled in the local market (barnett and carroll ; saxenian ; dobrev and kim, ). for example, barnett and carroll ( )’s study on early telephone companies found no density dependence effect of local density aggregated at the county level on the death rate. in addition, the concept of mutual forbearance (baum and korn, ; greve ; haveman and nonnemaker, ) emerging from multi-market contacts acknowledges complex aspects of local competition and mutualism not explained by the density dependence model. more recently, dobrev and kim ( ) provided an improvement over prior density dependence analyses by arguing that legitimacy occurs at the broader level of a market segment while competition is niche localized. it should be noted that this argument of competitive pressures cannot completely undermine the validity of my main argument of legitimacy contagion. although competitive intensity explains why hospitals are motivated to adopt something different, it cannot predict what they actually adopt to become different. the contagion of legitimacy suggests that hospitals adopt different practices that are still in the same category. specifically, hospitals choose what they think is similar to the practice of interest, and the categorical scheme widely available provides the social understanding of perceived similarity. in this sense, my study of legitimacy contagion provides a scope of differentiation under competition, thereby serving as a good complement to competition arguments. moreover, the result of analysis for contagion between conventional therapies in section . . provides additional evidence for the unique contribution of legitimacy contagion. using the same sample of hospitals (therefore the same level and pattern of competition between hospitals), models in table . examined if the diffusion of one or more conventional therapies affected the adoption of other conventional therapies. the results indicate no contagion effect for conventional therapies. another source of alternative explanations is resource scarcity. scarce resources required for adopting the same therapy may lead potential adopters to focus on other therapy requiring different resources. for example, qualified practitioners are critical and limited resources for hospitals; there are , massage therapists in , , chiropractors in , , acupuncturists in , and , naturopaths in , compared to , mds in (see figure . ). the problem of scarcity will become more aggravated when prior adopters are those hospitals in the same region that deplete existing resources. if prior adoptions involve resourceful therapies (i.e., therapies with many licensed practitioners, such as massage therapists), potential adopters will be able to adopt the same practice without having trouble in identifying licensed practitioners. however, when the number of licensed practitioners of a therapy is small, focal hospitals may not be able to adopt the therapy and instead have to seek other resourceful therapies. finally, it is worth examining the strength of integration between alternative and conventional therapies in their actual provision to patients. if prior adoptions of alternative therapies by hospitals serve as informational cues that facilitate the adoptions of other associated therapies, the salience of informational cues may rely not only on the total number of prior adoptions, but also on the extent to which adopted therapies are tightly integrated into conventional medical services because tight relationship between alternative therapies and a hospital’s core activities (i.e., conventional biomedical therapies) may enhance the credibility of informational cues. as zucker insightfully suggests, “the more tightly integrated the structure, the more rapidly the legitimacy spreads” (zucker : ; see also hernes ). the tightness measures may include co-location of alternative and biomedical therapies within the same facility and direct physician involvement, such as physical presence of mds in alternative medicine centers. . . generalization my research design limits the sample to hospitals in new york state, and is therefore not a random sample of all hospitals in the u.s. moreover my analysis was limited to conventional hospitals that were listed in the american hospital association (aha) data file. although the aha data file provides the most comprehensive list of hospitals, i cannot rule of the possibility that the adoption of alternative practices by hospitals that were not listed in the aha data file influenced hospitals in my sample. moreover, i did not include in the sample other medical establishments that were not conventional hospitals, but provided alternative therapies to the general public (e.g., free-standing alternative care centers). thus, the current study could not examine if the adoption of alternative practices by non-hospital care centers influenced the sampled hospitals. it is also important to note that my arguments in this research apply only to markets that are characterized by the presence of multiple practices, high uncertainty, and categories for the practices. the empirical setting of this research—i.e., the emerging market niche of alternative medicine—met these requirements. there are other examples that may show a similar effect of legitimacy contagion between related practices. for instance, high-performance work systems (hpws) refer to a set of separate human resource (hr) practices designed to enhance employee’s skills, commitment, and productivity (lawler ; pfeffer ). hpws typically include different hr practices, such as rigorous selection procedures, flexible job assignments, merit-based promotions, grievance procedures, cross-functional teams, extensive training and development, information sharing, group-based rewards, and competitive compensation (takeuchi et al. ; datta, guthrie and wright : ). insofar as hpws serve as a legitimate category for these hr practices and provide a common identity that shapes our perception about similarity for the practices, it is likely that the adoption of one or more hr practices positively influences the adoption of other hr practices grouped as hpws. this interaction in adoption between hr practices would be more likely to occur, especially when potential adopters face significant difficulty in evaluating the validity of the hr practices. total quality management (tqm) may show even more interesting patterns of practice diffusion. although tqm typically includes a set of multiple quality management practices, such as work teams, training, top-down implementation, benchmarking, and employee involvement, hackman and wageman point out that: an astonishing number of other interventions, some related to tqm and some not, are increasingly being herded under the tqm banner. in one or another book or article, virtually every intervention ever tried by an organization development consultant has been specified as something that is supposed to be done as part of tqm… that the sharp and defining edges of a management program become blurred as more and more initiatives are launched in its name is, if not inevitable, at least a sign of that program’s popularity and acceptance. ( : - ) the most frequently chosen “add-on” interventions were group-level performance- contingent rewards, work redesign, and empowerment programs (hackman and wageman ). while the contagion of legitimacy may occur among original tqm practices, the add-on practices under the tqm banner may also show similar diffusion dynamics. however, many markets may not display the conditions under which the contagion of legitimacy becomes valid. empirical observation suggests that zero-sum competition between practices and technologies, rather than collective legitimation through contagion, is more likely to occur. for instance, japan victor’s vhs format for home videocassette recorders vanquished sony’s beta-max format in the s, and microsoft’s word and excel triumphed over wordperfect and lotus - - . recently, public attention is focused on the battle over the next-generation dvd formats, blu-ray and hd dvd. under what conditions are multiple practices and technologies subject to the battles for market dominance, rather than legitimacy contagion? it appears that zero-sum competition is more likely to arise when practices and technologies are incompatible. compatibility is especially important when the number of prior adopters affects the utility that a given user derives from the adopted good or service, often referred to as “network effects” (katz and shapiro ). in markets with strong network effects (e.g., fax machines), users tend to choose the most widely adopted technology, which can provide highest compatibility. accordingly, organizations that provide incompatible technologies in such markets often engage in standards wars for market dominance. . implications and directions for future research the findings have important implications for existing theory and research in a number of ways. first of all, this study emphasized the multiplicity of practices in the diffusion processes. this is a significant departure from previous research on diffusion, which has almost exclusively focused on the spread of a single practice. one might argue that there are a few studies that might have addressed this neglected issue. for instance, davis and greve ( ) showed how golden parachutes and poison pills were diffused in strikingly different ways. however, the study showed a simple comparison of individual adoption patterns. thus the question of how multiple practices affect and are affected in their adoption processes remained unanswered. my research provides one answer to the question by examining the influence that the diffusion of one practice exerts on adoption rates of the other practice. a few studies in the literature on the economics of technological innovations have examined this issue more directly by focusing on a firm’s decision when multiple technologies are available. for example, stoneman and kwon ( ) examined the role of technological complementarity in the joint adoption of numerically controlled machine and coated carbide equipment (cutting tools). in their study, technological complementarity was defined to exist when the gross profit gain from the simultaneous adoption of two technologies is greater than the simple sum of gains from the adoption of each technology. they concentrated on a question of how a single organization simultaneously adopted multiple practices to obtain the joint profit gains. in contrast, i examined how an organization’s adoption decisions were driven by prior adoptions of other practices by other organizations even without a clear sign of joint profit gains. the unique contribution of my research is summarized in table . . the table uses two dimensions—adopters and practices—along which the explanations of organizational adoption are differentiated. because much research typically examines the adoption of a practice by potential adopters, the target phenomena of interest can be represented as the t cell in table . . the traditional contagion argument may be best described as an approach from a to t in the sense that this view draws upon the process in which adoption decisions of potential adopters are driven by their exposure to prior adopters. in other words, the traditional contagion argument involves the relationship between prior and potential adopters in the diffusion of a single practice. another approach from b to t involves the study of simultaneous adoption of two technologies in the economics of technological innovations literature (stoneman and kwon ). a similar approach includes the recent work on organizational learning which suggests that past adoption of a practice by an organization can encourage the same organization to adopt similar practices. for instance, colleges that adopted football teams were more likely to adopt lacrosse and hockey teams than other schools that did not have such experience (washington and ventresca, ). the theoretical interest of these studies lies in the relationship between focal and other similar/complementary practices adopted by the same organizations. table . different approaches to research on organizational adoption focal practice other practices focal adopter (potential adopters) t b other adopters (prior adopters) a c note: t denotes the target organizational behavior of research interest—i.e., the adoption of a focal practice by a focal organization. a—t stands for the traditional contagion approach that explains the adoption behavior by focusing on the influence of prior adopters on diffusion of the single practice. b—t represents the recent organizational learning literature and the economics of technological innovations literature that emphasize the role of past adoption of practices by a focal organization in the adoption of other similar/complementary practices by the same organization. c—t refers to the current research that concentrates on the influence of some practices by other organizations on the adoption of other practices by a focal organization. unlike prior approaches, my research provided a unique approach to diffusion studies by focusing on how the adoption of a focal practice by a focal adopter can be driven by the adoption of other practices by other adopters (c to t). to my knowledge, the current research provided the first empirical test for the new approach. even after controlling for the other two effects examined by prior research streams, the results of this research provided strong support for the proposition that the diffusion of individual therapies enhances the adoption of other associated therapies. this study also extended prior work on the role of cultural category in practice diffusion. although most diffusion studies typically consider diffusion a relational phenomenon, strang and meyer suggest that diffusion can be shaped by “culturally analyzed similarities among actors” ( : ). insofar as social entities belong to a common social category, the imagery of ties between them may emerge, although such ties are not purely relational but cultural. as strang and meyer argue, “[w]here actors are seen as falling into the same category, diffusion should be rapid” ( : ). the results of my research provided empirical evidence of the significance of cultural category. moreover, this research further explored the role of other categorical characteristics, such as similarity and ambiguity, in the diffusion dynamics of categorized practices. the results are also consistent with two studies of zuckerman that focused on the role of categories: ( ) securities analysts who specialized in a product’s category discounted firms whose products were not clearly categorized into existing classification systems of products (zuckerman ), and ( ) firms often engaged in de-diversification when product lines did not present coherent product identity in the stock market (zuckerman ). institutional approaches have long studied how organizations are constrained by accepted models, such as established categories shared by important audiences. as zuckerman suggests ( : ), for instance, “for a product to compete in any market, it must be viewed by the relevant buying public as a player in the product categories in which it seeks to compete.” failure to conform to the shared categories invites social penalties, such as reduced attention and recognition. earlier studies have control variables for the traditional contagion effect (a-t in table . ) and the learning effect (b-t) were prior adoption: focal therapy and prior adoption: focal hospital, respectively. focused on how categories constrain actors, but have devoted less energy to analyzing how categories enable actions. i addressed this gap by investigating how categories facilitated the spread of multiple therapies. this research also sheds light on the under-theorized process in which a small number of individual practices lead to the diffusion of other non-legitimate practices at an early stage of market creation and development and thereby contribute, if not intentionally, to the collective legitimation of a larger body of new practices and a broader industry niche. insofar as a small number of practices sequentially infect other associated practices which may in turn infect less associated practices, this contagion process may end up with the legitimation of non-legitimate elements that are only remotely connected to the original practices and would otherwise be unlikely to gain legitimacy. as such, the present study contributes to a growing body of research on the evolution of new markets and industries where a variety of new practices and structures are introduced and experimented, but weak in their legitimacy (aldrich and ruef ). this notion of legitimacy contagion is not entirely new, however. more than twenty years ago, zucker ( ) proposed that once a single element becomes institutionalized in formal organizations, other associated activities in organizations become “infected” with legitimacy (p. ; see also zucker , ). this insightful notion of legitimacy contagion, however, has not been empirically tested. my research revived the concept and provided the first empirical test for the usefulness of the concept. moreover, this research went beyond the original argument and further examined categorization as a source of association—the critical omission of zucker’s proposition. recently, organizational ecologists have proposed a similar concept of legitimacy transfer. in particular, theories in community ecology suggest that legitimacy can flow between organizational forms if they are related (i.e., the overlap of identities) (ruef ; dobrev ; dobrev, ozdemir and teo ). for instance, in their studies of bulgarian newspaper enterprises and singapore financial cooperatives, dobrev and his collaborators (dobrev ; dobrev, ozdemir and teo ) demonstrated that the emergent population can source legitimacy from an established one such that the failure rates of emergent population decrease. this line of research concentrates on contagion of legitimacy between populations, whereas my research focuses on contagion of legitimacy across practices to explain the diffusion of multiple practices within a population. thus the findings of my research complement and extend recent development in organizational ecological perspectives by providing evidence of the validity and usefulness of legitimacy contagion. it is notable that previous research on the creation of new markets and industries often exaggerates the ability of change agents and invokes the imagery of hero, thereby deflecting attention away from the broader institutional forces and unintended consequences of purposive action (hwang and powell ; aldrich and ruef ; lounsbury and crumley ). i did not assume that the collective legitimation of an emerging industry niche should be facilitated by the intentional coordination of industry-level association or voluntary collaboration between the professions of alternative practitioners. rather, it was simply assumed that actors (e.g., alternative therapists, hospitals, conventional practitioners, etc.) might indirectly affect the legitimation process “as part of their routine professional activities, as jurisdictional expansion, or as a matter of survival” (hwang and powell : ). this not only represents a more nuanced behavioral assumption, but also conforms to the current professional dynamics in the market of alternative medicine where no overarching, well-organized professional associations, such as ama, exist. a more coordinated endeavor was not pursued until when american hospital association organized a national conference that primarily aimed at disseminating best management practices of alternative medicine programs among senior-level health care executives, medical directors, nursing directors, and other alternative medicine practitioners. thus, this research presented a more interesting exploration into the context where individual level routine activities and field-level categorical systems combined to help less legitimate practices to gain acceptance and to legitimize a new industry niche at the collective level. in addition to the behavioral assumption of overly capable actors, another related weakness in existing theory concerns the overemphasis on rational decision- making of early adopters. much diffusion research has suggested that early adopters rationally pursue their interests, while late adopters are under increasing social pressure with the development of widespread and powerful cultural norms (e.g., tolbert and zucker ; westphal, gulati, and shortell ; sherer and lee ). in contrast, the current study examined whether and how the early adoption of a practice was driven, at least partially, by social influence of other actors as well as by an adopter’s idiosyncratic needs and interests. if a practice is at its early stage of diffusion when no or very few prior adoptions of the practice can be observed, potential adopters may have to depend solely on their unique interests to make adoption decisions. however, insofar as the early stage of diffusion is characterized by high uncertainty, potential adopters may also want to rely on social cues to guide their behavior. rather than rejecting the influence of other actors entirely, this study suggested that those who adopted similar, but not the exactly same, practices could serve as important sources of social cues that potential adopters look to. the findings of this study also show that hospitals avoided adopting the same practice that other hospitals already adopted, but they did not adopt too distinct therapies, either. this finding provides an interesting parallel with prior research on an optimal balance in identity. for instance, brewer ( , ) proposed the concept of “optimal distinctiveness” and suggested that individuals desire to attain an optimal balance between inclusion and uniqueness. the two basic human needs are in tension with one another. thus when there is too much of one motive, the other must increase in order to counterbalance it. other researchers have also identified two opposing pulls as primary drivers of identity dynamics among individuals (e.g., graafsma et al. ; kreiner, hollensbe, and sheep ). it is not clear whether organizations have the same internal orientation toward an optimal balance between inclusion and uniqueness and if so, how they attain such an optimal balance in identity. nevertheless, this idea of optimal distinctiveness is intriguing and worth further investigation. in particular, it would be interesting to examine whether and how an organization’s attempt to attain an optimal balance in identity leads to differentiation and isomorphism. although some researchers have suggested that “differentiation works hand in hand with isomorphism” (zuckerman : ; baum and haveman ), they have typically focused on economic conditions (e.g., competition) as major forces that shape organizational dynamics of differentiation and isomorphism. another interesting finding was that the significance of idiosyncratic characteristics of hospitals in adoption decisions of alternative therapies differed according to therapies. specifically, organizational characteristics of hospitals, such as size, service scope, and teaching, were significant predictors for the adoption of acupressure, when prior adoptions of other therapies did not explain the adoption of acupressure. it was nicely contrasted with the results for acupuncture and therapeutic touch. prior adoptions of other therapies had significant influence on the adoptions of acupuncture and therapeutic touch, while organizational characteristics did not. it appears that a hospital’s idiosyncratic characteristics become stronger predictors for the adoption of categorically ambiguous therapies, such as acupressure, while they lose the predictive power in the case of categorically unambiguous therapies, such as acupuncture and therapeutic touch. this result may suggest that categorical ambiguity discourages hospitals from using social cues, thereby increasing the influence of organizational characteristics. the changing importance of organizational influence on adoption decisions between therapies whose categorical identities are different is an interesting parallel with the temporal change in the influence of organizational characteristics in adoption decisions. the early vs. late adopter argument (e.g., tolbert and zucker ; westphal, gulati, and shortell ; sherer and lee ) suggests that an organization’s idiosyncratic characteristics explain the adoption rates better when institutional pressures are not strong in the early stage of practice diffusion than when most organizations conform to normative pressures in the later stage of diffusion. finally, my argument about legitimacy contagion across practices heavily depends on the stability of categorization. as such, it will be interesting to examine if the contagion effect remains significant when categorization is less stable. there has been a major disruption of the categorical scheme after nccam changed the categories of alternative medicine by merging and dropping existing sub-categories and adding new categories in recent years. as a result, current categorical systems of alternative medicine are different from those available during my study period. according to nccam’s recent fact sheets, categories of therapies are as follows: whole medical systems (homeopathy, naturopathy, traditional chinese medicine including acupuncture and massge, and ayurveda), mind-body medicine (meditation, prayer, mental healing, and therapies that use creative outlets such as art, music, or dance), biologically based practices (dietary supplements and herbal products), manipulative and body-based practices (chiropractic medicine, massage, and naturopathy), energy medicine (qigong, reiki, therapeutic touch, and bioelectromagnetic-based therapies). the change in previously accepted categorical systems may have weakened the influence of categorization on how we make sense of diverse alternative therapies and thus destabilized the association between multiple therapies. this future direction is important because it can provide a complete picture of the role of categories on diffusion. accessed at http://nccam.nih.gov/health/whatiscam/# on april , . appendix cross-sectional time-series logit analysis: adoption of therapeutic touch m m m m m m age . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) size (staffed bed) - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) size (outpatient) . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) growth (staffed bed) - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) growth (outpatient) . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) prior adoption (focal hospital) . *** . ** . *** . *** . *** . *** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) service scope . - . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) status - . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ownership (not-for-profit) . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ownership (for-profit) - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) teaching . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) mass media exposure - . . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) total population . - . - . - . . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) % population > - . - . - . * - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) % asian population - . - . * - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) accreditations - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) clinical evidence . * . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) prior adoption (focal therapy) - . ** - . * - . ** - . *** - . * - . *** ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) density . * . * . * . . * ( . ) ( . ) ( . ) ( . ) ( . ) therapies: same category . * ( . ) therapies: same sub-category . * ( . ) therapies: . ** . ** non-ambiguous category ( . ) ( . ) therapies: . . ambiguous category ( . ) ( . ) constant - . - . - . - . - . - . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) wald x . . . . . . degrees of freedom appendix (continued) alliance system se status age . - . . . ( . ) ( . ) ( . ) ( . ) size (staffed bed) - . - . - . - . ( . ) ( . ) ( . ) ( . ) size (outpatient) . . . . ( . ) ( . ) ( . ) ( . ) growth (staffed bed) - . - . - . - . ( . ) ( . ) ( . ) ( . ) growth (outpatient) . . - . . ( . ) ( . ) ( . ) ( . ) prior adoption (focal hospital) . *** . *** . *** . *** ( . ) ( . ) ( . ) ( . ) service scope - . - . . * . ( . ) ( . ) ( . ) ( . ) status - . - . . - . ( . ) ( . ) ( . ) ( . ) ownership (not-for-profit) . . . . ( . ) ( . ) ( . ) ( . ) ownership (for-profit) - . - . - . - . ( . ) ( . ) ( . ) ( . ) teaching . . - . . ( . ) ( . ) ( . ) ( . ) mass media exposure - . - . . - . ( . ) ( . ) ( . ) ( . ) total population . . . . ( . ) ( . ) ( . ) ( . ) % population > - . - . - . - . ( . ) ( . ) ( . ) ( . ) % asian population - . - . - . - . ( . ) ( . ) ( . ) ( . ) accreditations . . - . . ( . ) ( . ) ( . ) ( . ) clinical evidence . . . . ( . ) ( . ) ( . ) ( . ) prior adoption (focal therapy) - . - . - . * - . ( . ) ( . ) ( . ) ( . ) density - . - . - . . ( . ) ( . ) ( . ) ( . ) relational characteristics - . . . . ( . ) ( . ) ( . ) ( . ) constant - . - . - . ** - . ( . ) ( . ) ( . ) ( . ) wald x . . . . degrees of freedom standard errors in parentheses * significant at % ** significant at % *** significant at % appendix cross-sectional time-series logit analysis: adoption of acupressure (relational characteristics hypotheses) alliance system se status age . . . . ( . ) ( . ) ( . ) ( . ) size (staffed bed) - . * - . ** - . * - . ** ( . ) ( . ) ( . ) ( . ) size (outpatient) . ** . ** . . * ( . ) ( . ) ( . ) ( . ) growth (staffed bed) - . * - . - . - . ( . ) ( . ) ( . ) ( . ) growth (outpatient) . . . . ( . ) ( . ) ( . ) ( . ) prior adoption (focal hospital) . *** . *** . ** . *** ( . ) ( . ) ( . ) ( . ) service scope . . * . . * ( . ) ( . ) ( . ) ( . ) status - . ** - . - . - . ( . ) ( . ) ( . ) ( . ) ownership (not-for-profit) - . - . - . - . ( . ) ( . ) ( . ) ( . ) ownership (for-profit) - . - . - . - . ( . ) ( . ) ( . ) ( . ) teaching . . * . . * ( . ) ( . ) ( . ) ( . ) mass media exposure . * . ** - . . * ( . ) ( . ) ( . ) ( . ) total population - . * - . ** - . ** - . * ( . ) ( . ) ( . ) ( . ) % population > - . - . - . * - . * ( . ) ( . ) ( . ) ( . ) % asian population . * . ** . * . ** ( . ) ( . ) ( . ) ( . ) accreditations - . - . . - . ( . ) ( . ) ( . ) ( . ) clinical evidence - . * - . * . - . * ( . ) ( . ) ( . ) ( . ) prior adoption (focal therapy) - . - . - . . ( . ) ( . ) ( . ) ( . ) density . . . * . ( . ) ( . ) ( . ) ( . ) relational characteristics . ** . . - . ( . ) ( . ) ( . ) ( . ) constant . . . . 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mccrindle, md, mph, frcpc we evaluated the effectiveness of a pet visitation program in helping children and their families adjust to hospitalization on a pediatric cardiology ward. thirty-one pet visits were observed and followed by interviews with patients and parents. analysis of data suggested that pet visits relieved stress, normalized the hospital milieu, and improved patient and parent morale. the benefit received by the subjects correlated with the amount of physical contact and rapport developed with the visiting animal. copyright , elsevier science (usa). all rights reserved. hospitalization can be a frighteningexperience for children and a stressful time for their families. both child and parent must con- front an unfamiliar environment sometimes asso- ciated with considerable pain, in addition to the feelings of fear, anxiety, helplessness, and power- lessness that accompany severe illness, and one in which boredom and lack of stimulation increase as the period of hospitalization lengthens. pet visita- tion is one of the interventions that have been used to alleviate the stress of hospitalization. in recent years, pet visitation programs have been started in hospitals across north america with specially trained animals. thus far, anecdotal evidence and the critical response of patients and staff have been positive: patients have reported reduced stress and increased levels of happiness and contentment (cole & gawlinski, ). thus the evaluation problem was that the expe- rience of hospitalization for children and their fam- ilies can be dislocating and disorienting, and it was identified that there was a lack of knowledge re- garding the potential benefits and risks with regard to the use of pets in this setting. the purpose of this evaluation was to determine the impact of a pet visitation program on patient and parent satisfac- tion, physiologic measurements of stress, and per- ceived normalization of the hospital milieu. the setting was the pediatric cardiology inpatient unit of the hospital for sick children, toronto, on- tario, canada. background animal-assisted therapy is an interdisciplinary approach in which animals are used as adjuncts to other therapies. pet visitation is its simplest and least structured form (gammonley & yates, ). theoretically, the establishment of a human– companion animal bond creates a relationship free of the stress and complexities of judgment and expectations. the exchange of affection between human and animal is not ambivalent, differing from human interpersonal relationships between family members and other loved ones, which are frequently charged with ambivalence and negative emotional states. human love and comfort, if available at all, frequently must be earned through sacrifice and compromise, whereas pets offer a source of comfort that can be scheduled on demand of the owner in almost any quantity (bardill & hutchinson, ; jorgenson, ). the animal accepts without condition, loving without care or from the division of cardiology, department of paediatrics, the hospital for sick children and the university of toronto, toronto, ontario, canada. address correspondence and reprint requests to brian w. mccrindle, md, mph, frcpc, department of paediatrics, the hospital for sick children, university ave, toronto, ontario, canada m g x . email: brian.mccrindle@sickkids. on.ca. copyright , elsevier science (usa). all rights reserved. - / / - $ . / doi: . /jpdn. . journal of pediatric nursing, vol , no (october), consideration, regardless of illness, deformity, or disability, offering security in that love and giving both child and parent a sense of empowerment in a sometimes overwhelming environment. for children, pet visitation is also thought to reduce separation anxiety and offer a pleasant di- version from anxiety-provoking treatments. inter- action with the animal helps reinforce the child’s sense of self-concept in the face of the adult ther- apist, who is perceived as an authority figure (davis, ). the visiting animal has also been found to provide motivation for children in pain to comply with treatment and behavior modifications (kale, ). it is believed that the presence of the friendly animal helps to redefine the perception of the hos- pital environment by introducing something se- cure, familiar, and associated with the natural world. the friendly animal also provides relief, stimulation, and encouragement, offering a plea- surable experience to look forward to and a recep- tacle for the projection of feelings of fear, pain, and anxiety (bardill & hutchinson, ). the ani- mal’s presence may help facilitate social interac- tion, ambulation, activity, and compliance with treatment (davis, ; gammonley & yates, ). the pet becomes a pillar of support and a source of strength, psychological sustenance, and optimism. the idea of “contact comfort,” in which simple physical interaction such as holding, petting, or touching produces changes in heart rate and blood pressure, may also apply to pet visitations. re- searchers have proposed that petting an animal may produce a direct physiologic effect (jorgen- son, ). anecdotal evidence suggests that human-animal bonding has a positive influence on human health in both outpatient and inpatient settings. for ex- ample, pet owners with chronic illnesses have less morbidity than those without pets (gammonley & yates, ). pet ownership has been found to reduce risk factors of heart disease and to improve social and psychological functioning, and cardiac patients who own pets have been found to survive longer than those who do not (cole & gawlinski, ; jorgenson, ). companion animals have also been found to reduce nursing home residents’ need for medication (zisselman, rovner, shmuely, & ferrie, ). in addition to the psychological benefits, quan- titative studies have shown that, in the presence of a good human-animal bond, animal visitation to adult and geriatric patients can lower blood pres- sure and reduce perceived pain (baun, bergstrom, langston, & thomas, ; harris, rinehart, & gerstman, ). for example, a randomized, par- allel-group control treatment trial of geriatric psychiatry inpatients with chronic age-related dis- abilities, in which pet therapy intervention was compared with an exercise program for hour a day over consecutive days, found equivalent changes in blood pressure, pain perception, and multidimensional observation scale for elderly subjects scores in both groups, as well as a non- significant tendency for subjects in the pet inter- vention group to have less irritable behavior (zis- selman, rovner, shmuely, & ferrie, ). a qualitative study involving adolescents hospi- talized in a psychiatric unit with a therapy dog living in the unit, in which ethnographic methods of analyzing data collected through patient jour- nals, interviews, anecdotal notes, and staff reports were used, found that the subjects identified the dog as a friendly component of the hospital milieu and served as a catalyst for interactions between individual patients, as well as between patients and staff (bardill & hutchinson, ). the benefits of a pet visitation program are not reserved to the patients; staff and family also ben- efit. the pet has been found to reduce the perceived stress levels of the nursing staff, allowing them to better function in their jobs and giving them more productive time with their patients (carmack & fila, ). volunteers have indicated that the presence of companion animals made their own experience more satisfying (harris, rinehart, & gerstman, ; zisselman, rovner, shmuely, & ferrie, ). methods the pets at work program pets at work (paws) is a pet visitation program designed to provide an opportunity for therapeutic interaction for patients, parents, and staff at the pediatric cardiology ward of the hospital for sick children. the dogs in the program are trained to come and sit still on command, to fetch a small thrown toy, to climb onto beds and chairs only when commanded to do so, to remain calm and relaxed in the presence of several human beings, and not to bark or bite under any circumstance. these dogs are brought to visit patients and their families privately in their rooms on the ward once a week, with a typical visit lasting to min- utes. during the visit, both the patient and parent are free to interact creatively with the dogs in any manner they wish under the supervision of trained paws volunteers. pet visitation on a pediatric cardiology inpatient unit three dogs were used in the paws program during the evaluation period: blue, a -year-old golden retriever; bertie, a -year-old shih tzu; and gioia, a -year-old mixed breed. the dogs visit in pairs, an arrangement that allows for flexibility and variety for the patients and their parents. large, placid dogs like blue make wonderful cuddlers for children (kale, ), whereas smaller dogs like bertie and gioia are ideal for initiating contact with very young children and infants who might be intimidated at first by the presence of a large, unfamiliar animal. the presence of dogs also allows for both child and parent to interact with a dog simultaneously. patient population the patient population included the patients and parents who participated in the paws program at the cardiology inpatient ward of the hospital for sick children over a period of months. patients ranged in age from young infants to teenagers. parents were required to sign a consent form ear- lier in the day before the dogs were allowed into the patients’ rooms, and children in protective or infectious isolation or with allergies to dogs were precluded from participation in the program. for the evaluation, pet visits were observed, followed by an interview with both the parents and the patient. each patient was observed during the first pet visit. establishing the bond establishment of a healthy and effective bond is an essential first step for patients to benefit from pet companionship (zisselman, rovner, shmuely, & ferrie, ). the complex process of bonding is affected by many factors, including the temper- aments of the child, the parents, and the animal. other factors include the facilitation provided by the volunteers and the setting and environment of the visit. with the right combination of these fac- tors, the establishment of a healthy bond can be remarkably swift. visible signs of bonding and rapport were often observed within minutes of the initiation of the visit, and sometimes this process seemed to occur virtually instantaneously. the level of physical activity during the pet visit between the child and the dog and the parent(s) and the dog, as observed by a member of the evaluation team, was recorded and classified into of levels. activity was considered level if there was no interaction or outright avoidance between the dog and the subject. interactions limited to eye contact with no attempt at communication were classified as level . interactions that involved an attempt at communication, either verbally or by gesture, but without any physical contact between the animal and the subject were considered level . interac- tions where physical contact occurred between the dog and the subject, but without any attempt at communication, were classified as level . interac- tions that involved both verbal or nonverbal com- munication and simple physical contact such as petting or stroking the dog were considered level . when a complex physical interaction involving both communication and active play occurred be- tween the pet and the subject, the activity was considered level . the observer also subjectively evaluated the level of rapport achieved between the subject and the visiting animal and classified it into of levels. if the subject appeared uncomfortable with the dog throughout the course of the visit, this was considered level � . if the subject appeared to be comfortable with presence of the animal and/or showed transient interest in the animal, this was recorded as level . if the subject displayed a sustained interest in the dog over a period of time greater than half the total visit and the emotional tone of the encounter was largely neutral, this was recorded as level . if the interaction between the dog and the subject was warm, friendly, and re- laxed, this was classified as level . if the interac- tion appeared to be loving and intimate, this was classified as level . in the subsequent interview, the subject was asked to describe his or her own feelings generated by the encounter and then to choose which of terms represented those feelings most closely. the terms the subject could choose from were strongly negative (level � ), unease or dislike (level � ), indifference (level ), calm and relaxed (level ), pleased and content (level ), and happy and joyful (level ). the levels of observed activity, the observer’s subjective classification of rapport, and the sub- ject’s own description of feelings generated during the encounter are summarized in table . milieu impact to assess milieu impact, the patients and par- ents were asked to describe what they thought and felt about the hospital environment and what kind of impact the pet visit had on these opinions and feelings, if any. they were then asked to choose which of levels most accurately de- scribed how the pet visit affected their percep- tion of the hospital milieu. if they felt that the pet visit changed their perception of the hospital milieu negatively overall, they were asked to wu et al select level � . if they felt that the pet visit did not change their perception of the hospital mi- lieu, they chose level . if they felt that the pet visit primarily distracted them from the everyday reality of the hospital milieu, they chose level . if they felt that the pet visit helped normalize their perception of the hospital milieu by making it feel more like home or the outside world, they chose level . the milieu impact levels are also summarized in table . measures of satisfaction patient and parent satisfaction with the paws program was also assessed. both parents and patients were asked whether they felt they ben- efited from the visitations and, if so, to identify in which way they felt they gained the most benefit. they were also asked whether their ex- perience with the paws dogs changed their own feelings about pets and animals. finally, they were asked whether they would want another visit and whether they would recommend pet visitation to others. physiologic parameters a subset of the patients receiving pet visits had vital sign monitors attached for medical reasons. in these patients, physiologic parameters of heart rate, respiratory rate, and oxygen saturation were re- corded, with beginning, end, high, and low values noted. data analysis the data were statistically analyzed with the use of the sas statistical program (sas institute, cary, nc). kendall � correlation coefficients were calculated between physiologic parameters and measures of activity, feelings, and rapport for both patients and parents. correlations among the mea- sures of activity, feelings, and rapport themselves were also calculated and frequency tables gener- ated. table . measurement scales level/category description activity scale no activity/avoidance eye contact/watching communication without physical contact physical contact initiated or accepted physical contact with communication active play rapport scale – subject uncomfortable with dogs comfortable with dogs, transient interest sustained interest interaction is warm, friendly, and open interaction is loving and intimate feelings scale – strongly negative – unease or dislike indifferent calm and relaxed pleased and content happy and joyful milieu impact scale � negative impact no impact distraction—described as “something new,” “a diversion,” etc. normalization—described as “more homelike,” “something familiar,” etc. benefit categories no benefit relief—calming, reduction of fear, stress relief, diversion, etc. motivation/facilitation—gives motivation to get better, comply with treatment; facilitates social interaction, provides topic of conversation, etc. unconditional love—makes subject feel loved, accepted, needed, and valued object of comfort/projection of feelings—gives subject sense of control, offers opportunity to release fears and worries pet visitation on a pediatric cardiology inpatient unit results patient population a total of children, girls and boys, were observed during pet visitation encounters in the course of the evaluation, along with mothers and fathers, with encounters with both par- ents present. the median patient age was years, ranging from months to years. eight of the patients were under the age of years and were not interviewed. none of the children had been visited by a dog before during any previous hospital ad- missions. fifteen patients were in the hospital for heart surgery, for cardiac catheterization, for arrhythmias and pacemaker placement, and for adjustment of medications. four patients were be- ing treated for noncardiac conditions but were on the ward because they had significant underlying cardiac disease that required monitoring, and had noncardiac conditions. half of the participating families currently owned a pet, % had previous experience with a pet, and the final % had no experience with pets. as the paws program is voluntary, all of the participants were favorably disposed toward animals from the outset: % of patients and % of parents indicated that they were highly favorable. thirteen patients had cardiac and vital sign mon- itors attached for medical reasons and had their physiologic parameters recorded. patient and fam- ily demographics are summarized in table . physiologic parameters no statistically significant changes were ob- served in oxygen saturation levels or in heart and respiratory rates between the beginning and end of pet visits. significant transient changes, however, were observed during the course of the pet visita- tion. there was a significant difference between the highest observed respiratory rate and the be- ginning rate: the mean increase was . breaths/ min, with an sd of . breaths/min (p � . ). the degree of this rise in respiratory rate correlated negatively with the degree of rapport established between patients and visiting dogs (r � � . , p � . ). thus the stronger the rapport that devel- oped between the patient and the visiting dogs was, the less intense the increase in respiratory rates during periods of stimulation was. a significant difference between the beginning and low values for both respiratory and heart rates was also observed. the difference between the beginning and low respiratory rates averaged . breaths/min, with an sd of . breaths/min (p � . ), whereas the mean difference between the beginning and low heart rates was . beats/min, with an sd of . beats/min (p � . ). decreases in respiratory rate were noted most frequently dur- ing periods of physical contact between patients and dogs, but there was no significant correlation between the magnitude of the falls in respiratory rate and the activities undertaken by the child with table . demographic data patient demographics total patient population (n) males ( %) females ( %) median age (range) y ( mo to y) patients aged � y ( %) patients on cardiac monitoring ( %) reason for hospitalization heart surgery ( %) cardiac catheterization ( %) arrlythmia/pacemaker ( %) medication adjustment ( %) noncardiac underlying cardiac disease ( %) no underlying cardiac disease ( %) family demographics total parent population (sets) mothers present ( %) fathers present ( %) both parents present ( %) families currently owning a pet ( %) families with previous experience with a pet ( %) previous disposition toward animals parents (highly favorable/favorable/unfavorable) %/ %/ % patients (highly favorable/favorable/unfavorable) %/ %/ % wu et al the dog. this finding may reflect the fact that no distinction was made in the nature and duration of physical contact (e.g., whether it was calm petting or stroking or boisterous play). in conclusion, a pet visitation can have both stimulating and relaxing effects on pediatric pa- tients, and these effects are accompanied by appro- priate changes in respiratory rate and heart rate. the establishment of a strong rapport with the dogs appeared to lessen the intensity of the impact that stimulation had on heart rate. relaxation effects seemed to dominate over stimulation effects as rapport developed between the children and the paws dogs. activity, rapport, and feelings table shows the frequency distributions of activity, rapport, and feelings rankings for both patients and parents in the paws program in cor- relation with each other. among the patients, all of the children had interactions with the dogs that included physical contact (activity levels , , and ). of these children, established rapport that was observed to be in the positive categories (lev- els and ) and reported positive feelings generated by and during the pet visitations (levels and ). a significant correlation was observed between the presence of physical contact and both the establishment of rapport (r � . , p � . ) and the patient’s self-reported positive feelings (r � . , p � . ). similarly, a correlation was observed between the observed level of rapport and the degree of positive feelings reported by the patients themselves (r � . , p � . ). once again, most of the children ( / ) scored in the double positive area, with both positive rapport and positive feelings. many of the subjects commented on the enjoyment they received from touching and interacting with the dogs. one child reported, “i liked the warmth [of the dog],” and a mother, commenting about her son, remarked that “he loves it when the dogs get on the bed with him.” when the effects of activity on the establishment of rapport and the generation of positive feelings for the parents were analyzed, the correlations were even stronger than for the children (r � . and p � . for correlations between activity and rapport; r � . and p � . for correla- tions between activity and feelings). this trend could be a result of the parents having more pre- viously established positive ideas about their feel- ings about animals and the activities they enjoy doing with them. unlike the children, who were entirely distributed within or near the triple posi- tive ranges (activity including physical contact, positive rapport, and positive self-reported feel- ings), the parents comprised two groups. the first and larger group, like the patients, had triple pos- table . correlations between activity, rapport, and feelings generated by pet visitation for patients and parents activity levels patient rapport levels (n � )* – parent rapport levels (n � )† – patient feelings level (n � )‡ – – parent feelings level (n � )§ – – rapport levels � patient feelings level (n � )� – – parent feelings level (n � )¶ – – r, kendall � correlation coefficient. *correlation of patient activity level with rapport level: r � . , p � . . †correlation of parent activity level with rapport level: r � . , p � . . ‡correlation of patient feelings level with activity level: r � , p � . . §correlation of parent feelings level with activity level: r � . , p � . . �correlation of patient feelings level with rapport level: r � . , p � . . ¶correlation of parent feelings level with rapport level: r � . , p � . . pet visitation on a pediatric cardiology inpatient unit itive ranges, but a smaller second group was ob- served to have triple neutral ranges. these were the parents who largely chose not to interact with the pets themselves and instead essentially stood back and watched their child play with the dogs. they tended not to have physical contact with the ani- mals, and their observed rapport and self-reported feelings were at neutral levels. as with the pa- tients, there was a correlation between the degree of rapport and the level of positive feelings for the parents (r � . , p � . ). interestingly, many parents stated during interviews that one of the most important reasons that the pet visitations made them happy was that they were able see their children be happy with the dogs, but there was no correlation between the child’s reported feelings and those of the parents. no patient or parent scored in the negative ranges for activity, rapport, or feelings. no one who participated in the paws program completed a visit feeling that it had been a negative experi- ence. milieu impact in total, % of the children and % of the parents reported that the presence of the dogs helped normalize their hospitalization experience, and % of the children and % of the parents thought that the pet visitations were a pleasant distraction from the reality of hospitalization. one child commented that the dog visit “makes you feel like you’re at home”; in a similar vein, another child said, “[the dog] makes the hospital feel really homish.” a third patient reported that having the dogs visit “makes you feel kind of normal.” this effect was also noted by the parents: one father commented on how the visits “make the atmo- sphere less clinical,” and one mother added that the dogs were “like something from home.” other subjects found the pets to be a pleasant diversion, with one mother telling the interviewer that the pet visit “took my mind off my worries and helped me get back into the norm.” another parent com- mented that the visits were “a nice change from the everyday routine.” a small percentage ( % of pa- tients and % of parents) indicated that the pet visitation did not change their impression of the hospital milieu. again, no negative impact was reported by any of the patients or parents. distrac- tion was the primary milieu impact, particularly for the younger children. benefits and satisfaction commenting on the dogs, one mother said “they can feel when a child is in pain, or happy, almost as if they can read their minds.” another subject, referring to one of the dogs in the program, ob- served that “he has a ’love me’ look that makes you feel needed.” most patients ( %) considered relief the most important benefit of the pet visits, % chose the giving of unconditional love, and the remaining % said it was the motivation to get better or to stay optimistic. none of the patients believed that they received no benefit from the pet visit. (see table for the benefit categories.) among the parents, % identified relief as the most important benefit, % said the most impor- tant benefit was the giving and receiving of uncon- ditional love, % felt that they personally re- ceived no benefit, % felt that the most important benefit was the facilitation of social interaction, and % identified having the pet as an object for the projection of feelings as the most important benefit. these self-reported benefits were correlated by observation. both children and parents were seen to take pleasure in receiving unconditional love from the dogs, children were observed being mo- tivated to look forward to another visit, and both children and parents were observed anthropomor- phizing the dogs and projecting feelings, though they did not necessarily identify this process ex- plicitly. in large part the participants in paws were highly satisfied with and supportive of the pro- gram. all of them wished to be visited again in the event of a future hospitalization, % of patients and % of parents reported that the visitation had made their attitudes toward animals (generally al- ready positive) even more positive, and none re- ported that the visits made their attitudes toward animals worse. eight percent said they would rec- ommend pet visitation for other hospitalized chil- dren, % would recommend it for both hospital- ized adults and children who liked animals, and % said they would recommend a pet visit to anyone, even those who did not normally like animals. of those interviewed, % believed that the paws program as currently run poses no sig- nificant risk to the children and % considered the program to be beneficial. limitations of the evaluation the sample was self-selected because of the voluntary nature of the program, so most sub- jects were predisposed to react favorably to a pet visitation. the children involved comprised a wide range of ages and maturity levels, and patients and parents were interviewed together: the opinions of one, therefore, may have had an wu et al impact on those of the other. because all of the encounters in this evaluation were first-time vis- its, only the initiation of human-animal bonding could be observed. there were insufficient num- bers of patients who received multiple visits over long hospital stays to analyze the impact of bond strengthening over time. although the changes in physiologic measurements were sug- gestive of a beneficial effect, we lacked a control group for comparison. further investigation will be necessary to determine whether pet visitation has any important impact on physiology. we did not use any previously available instruments for assessment in this evaluation. an important lim- itation is that we did not assess validity or reli- ability of our evaluation interview, nor did we perform any formal qualitative analysis. discussion the benefits of animal-assisted therapy span the spectrum of age, culture, and creed. studies have shown tangible benefits in patient populations ranging from geriatric (gammonley & yates, ; harris, rinehart, & gerstman, ; zissel- man, rovner, shmuely, & ferrie, ) to pediat- ric (bardill & hutchinson, ; davis, ; kale, ) in many different areas of clinical medicine, from home care (harris, rinehart, & gerstman, ) to intensive care (cole & gaw- linski, ) to psychiatry (bardill & hutchinson, ; zisselman, rovner, shmuely, & ferrie, ). cultural attitudes toward certain types of animals in specific settings likely affect the process of bonding, but these factors were not observed in this project because participation in paws was voluntary. the paws program has been enthusiastically received by both patients and parents on the car- diology ward, and tangible benefits of this program in both physiologic and psychological factors have been observed and measured. both stimulating benefits, such as waking a child who is groggy from recently completed surgery, and relaxing ben- efits, such as calming a tense child waiting for a procedure, with concurrent physiologic changes, were evident. the physiologic impact of stimula- tion is reduced as rapport is developed. relaxation and calming appear to become more common and important as the patient and dog grow more famil- iar with each other. relaxation effects on heart and respiratory rates were consistent with the results of a study in which petting one’s own dog, with whom a bond had been established, produced a relaxation effect similar to quiet reading in adults (baun, bergstrom, langston, & thomas, ). the fall in heart rate was also consistent with the fall in heart rate observed during pet visitations in geriatric populations (harris, rinehart, & gerst- man, ). however, changes in respiratory rate were not statistically significant in the geriatric study, whereas in this evaluation changes in respi- ratory rate were the most notable physiologic ef- fect. this may reflect the physiologic differences between children and elderly adults or the fact that the patient population in this evaluation had a greater incidence of cardiac disease. establishment of rapport and generation of pos- itive feelings were enhanced by physical contact and close proximity. maneuvers such as bringing the child down to the pet on the floor, bringing the pet up onto the bed with the child, or letting the child walk the pet around the unit under supervi- sion help establish the warmest relationships in the shortest time and generate the most patient and parent satisfaction. finally, the benefits of bonding are not exclusive to the patients and parents who sign up for a visit. anyone on the ward during the time the dogs are making their rounds, including staff, volunteers, and other parents and patients not confined to their rooms, can benefit as well. as in the study by bardill & hutchinson ( ), the presence of the visiting animal in the hospital helped make the hospital milieu more homelike, friendly, safe, and protective. distraction and stress relief were the primary benefits of this interven- tion, with normalization secondary, perhaps be- cause of the brief nature of the visits, as stress relief requires the least amount of bonding. for children with long hospital stays who receive many visits, the importance of normalization may in- crease and the impact of diversionary aspects may gradually become less important. the process of hospitalization can be a stressful, frightening, and confusing time for pediatric pa- tients and their families and may negatively affect the clinical outcome. the effort to make the expe- rience of hospitalization less daunting for children is a continuing one, and the friendly pet can be a valuable ally in this endeavor. nurses should be aware of the dislocating and disorienting effects of hospitalization on their young patients and their families. nurses can be strong advocates in the development of similar programs within their in- stitutions. it is hoped that the data provided from our evaluation will assist in this endeavor. other opportunities for normalization of the hospital mi- lieu might be the subject of further nursing re- search. pet visitation on a pediatric cardiology inpatient unit references bardill, n., & hutchinson, s. ( ) animal assisted therapy with hospitalized adolescents. journal of child and adolescent psychiatric nursing., , - . baun, m.m., bergstrom, n., langston, n. f., & thomas l. ( ). physiological effects of human/companion animal bonding. nursing research., , - . carmack, b.j., & fila d. ( ). animal assisted therapy: a nursing intervention. nursing management., , , , - . cole, k.m, & gawlinski, a. ( ). animal assisted therapy in the intensive care unit: a staff nurse’s dream come true. nursing clinics of north america, , - . davis, j.h. ( ). children and pets: a therapeutic connec- tion. pediatric nursing, , - . gammonley, j., & yates, j. ( ). pet projects: animal assisted therapy in nursing homes. journal of gerontological nursing, , - . harris, m.d., rinehart, j.m., & gerstman, j. ( ). animal assisted therapy for the homebound elderly. holistic nursing practice, , - . jorgenson, j. ( ). therapeutic use of companion animals in health care. journal of nursing scholarship, , - . kale, m. ( ). kids and animals: a comforting hospital companion. interactions, , - . zisselman, m.h., rovner, b.w., shmuely, y., & ferrie, p. ( ). a pet therapy intervention with geriatric psychiatry inpatients. the american journal of occupational therapy, , - . wu et al wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ emergence and re-emergence of zoonoses copia esclusiva per: prof. vittorio sala * department of veterinary science and public health (divet), university of milan, italy ann ig ; : - doi: . /ai. . emergence and re-emergence of zoonoses. context and consequences v. sala*, e. de faveri* key words: emerging zoonoses, public health, interdisciplinary perspectives parole chiave: zoonosi emergenti, sanità pubblica, prospettive interdisciplinari abstract zoonoses have been and are still considered merely a “veterinary problem”. instead, the understanding of their emergence, re-emergence and persistence is more effectively addressed in the context of a “strug- gle” between pathogens, animals and man. the expression properties of pathogens are related with three interfaces: human-environment, environment-animal and human-animal. animals and man can be either reservoirs or vectors of pathogens, while interfaces can amplify the clinical impact in all the species involved. the disease course is similar in animals and humans in terms of infection, clinical approach and control. thus, this “epidemiological model” may be the key to an “updated” interpretation of infectious diseases involving humans and animals. control and prevention should be carried out in an interdisciplinary context, without separating the medical and veterinary domains, in light of the fact that the activity of pathogenic microorganisms is not species-dependent. finally, if human public health and veterinary public health are closely linked, knowledge and information can be pooled and used for mutual benefit. introduction for many years, we have considered infectious diseases as a struggle, at times uneven, between two biological systems of different complexity: on the one hand, pathogenic microorganisms, with specific traits in terms of survival, infectiousness and pathogenicity, on the other, man and/ or animals, characterised by a homeosta- tic balance in which the built-in immune response is often the critical element in determining the chances of survival. such “basic” concepts of infectivology have been transferred – apparently unal- tered – to the study and understanding of zoonoses, often considered merely a “veterinary problem” ( ). with the passing of time, and mainly as a consequence of the fine-tuning of epidemiological studies, the circumstan- ces in which the pathogen-animal-man “struggle” occurs began to be seen as a qualifying trait in this respect; thus, the emergence, re-emergence and persistence of zoonoses have become more easily understandable, because three different interfaces have been related to the expres- sion property of pathogens ( ): human-environment interface, where the behavioural habits associated with people’s lifestyle, state of health and economic level interact with the urban environment, where the ecology of animal populations and environmental hygiene and sanitation determine the levels of v. sala et al. copia esclusiva per: prof. vittorio sala survival and maintenance of pathogens (example: toxocara canis in the sapro- zoonosis of recreational area). animal-environment interface, typical of intensive animal husbandry, where very numerous animal populations are influenced by the breeding environment and modify, by their presence, the sur- rounding environment; moreover, some wild species have changed their habits, becoming potential vectors for both man and domestic animals – for example, sea- gulls, now present in urban environments also in non-coastal cities and already re- ported as vectors of chlamydial infections in domestic ruminants and humans. human-animal interface, logically re- lated to zoonotic infections, but enormou- sly strengthened, in terms of infectious contacts, by the urban density of pets (interspecific cycles of giardia lamblia in children and domestic carnivores) and the density of intensive animal husbandry (amplification of the salmonella risk). against this backdrop, animals and man can be both reservoirs and vectors of pathogens, facilitated by the increasing ease and frequency of travel between continents; as a consequence, territorial distance is no longer in itself an effective barrier against the spread of a disease, or for its containment, and the epidemio- logical relevance of interfaces can be amplified rather quickly ( ). moreover, economic interdependence among countries has significantly incre- ased, while market instability, with its price variability, has triggered a change in consumption patterns: the international trade in animals and animal products has increased sharply over the last decade, and systems producing at low cost – but also at low health safety levels – have become part and parcel of the “global” m a r ke t e c o n o m y. t h e va r i a b i l i t y o f supplies in a very competitive and incre- asingly mobile food production system has indeed contributed to the spread of zoonotic diseases that were once confined to specific geographical areas ( ). the effects of globalisation and ease of transportation have brought about a huge increase in animal transport flows, as well as an increase in the consumption of products of animal origin, along with the possibility for man to reach far off places in the blink of an eye; the unque- stionable positive effects of this facet of modernisation inevitably goes hand in hand with the negative – and certainly undesired – effects of the exchange of pathogens and their spread. the same ap- plies to the commercialisation of wild and exotic animals: more and more species are imported for exhibition in zoos or as an “alternative” to animals traditionally considered as pets. t h e i m p o r t i n g o f s o m e p r o t e c t e d species is currently strictly regulated; despite this, illicit trade has unfortunate- ly become a growing phenomenon that, given its nature, can in no way guarantee health safety. such practices, apart from obviously affecting animal well-being, pose a concrete risk for human-animal health and for social safety. in spite of all this, most clinical cases of zoonoses with this origin (such as psittacosis) concern legally imported wild fauna ( ). whenever a zoonosis breaks out, or resurges, its spread may be fostered by shifts within and among human and animal populations; growing migratory flows, also defined “long-term popula- tion re-settlements”, probably enable the spread of diseases characterised by long periods of latency or infectiousness, whi- le short-term mobility for “tourism” or “business” purposes may rapidly spread infections and provoke clinical disease forms that, in most cases, have short resolution periods. yet, it is also possi- ble that business travellers in particular, even more so if “repetitive” in terms of emergence and re-emergence of zoonoses copia esclusiva per: prof. vittorio sala destinations, may become simple vectors of infection “transfer” ( ). the exposure of human populations to animal contact – and thus to potential zoonotic infections – is radically different in urban and rural areas. while, in the latter, the risk is related to professional exposure and, possibly, transmission from workers to their family members, in an urban environment, a high number of new epidemiological cycles occur as a consequence of the “mixing” of two numerous and constantly expanding po- pulations: human and animal, with the latter constituted by domestic species as well as synanthropic ones. moreover, the increasing global flow of people, goods, food products, domestic and wild animals is bound to influence “microbial traffic”, which is also globa- lised and associated with the outbreak of “emerging zoonoses” of a viral, bacterial and parasitic origin. the new exploitation models have in- tensified agriculture and animal husban- dry – often through imprudent deforesta- tion practices and the alteration of soils and waters – as well as the “trespassing” of pathogens previously restricted to wild fauna species (francisella tularensis, the agent of tularemia in wild lagomorphs) ( ); all this has contributed to the tran- smission of pathogens between different, fully receptive species, and the outbreak of epidemic diseases involving humans and animals alike ( - ). a telling example can be discerned in the environmental changes brought about by the mushrooming of building sites, especially for touristic purposes, in previously unpopulated locations, leading to a rise in the number of cases of dengue fever, due to increased contact between human groups and the aedes aegypti mo- squito that carries the virus ( ). new and increasingly varied types of risk for consumers stem from the broad area of food-borne infections (think for instance of the diversification associated with the fast-food industry, or that of pre- cooked food for catering), associated with the food and agricultural domain, via the industry transforming and preparing food of animal origin. this supply and produc- tion chain must indeed be considered in all of its constituent elements, including the production of raw materials for fee- ding animals that are destined, in turn, to become food for the sustenance of human populations: “we are what we eat” is and remains a meaningful statement. many of these problems stem directly from the maximisation of livestock bree- ding systems and a constantly expanding market that seeks new, more profitable commercial opportunities in countries that ensure raw materials at low cost, but which do not always provide the ne- cessary guarantees from a health safety standpoint. finally, in countries with “evolved” animal husbandry systems, intensive breeding, sometime inadequate sanitation and the overcrowding of animals have resulted in systematic antibiotic use and, as a consequence, the selection of anti- biotic-resistant microorganisms, which have now become a health emergency issue ( - ). several studies carried out jointly by sociologists, physicians and veterinarians have hinted at a number of different social and cultural factors very likely linked to the outbreak of zoonotic diseases; first of all, as mentioned above, the demographic changes resulting from unprecedented po- pulation shifts giving rise to a multi-racial society – one with different cultures, but also different food habits ( ). such habits are increasingly varied, being influenced by culture, religion and the social position of “newcomers” in societies that are – at least formally – “evolved”; taste (i.e., what is considered v. sala et al. copia esclusiva per: prof. vittorio sala good) is a cultural trait that influences the preparation of food. new dishes and foodstuffs, prepared according to varying customs, have become part of the dietary habits of populations that previously did not know them, thus entailing a further zoonotic risk, since this phenomenon has indirectly increased the request of pro- ducts of animal origin, some of which are imported from non-eu countries ( ). one example is the practice of ritual slaughter, where inspection standards are not always easily applied (in this situation new and different diffusion ways of echi- nococcosis are possible) or mixed cooked preparations (like kebab), or again, the consumption of raw meat or fish (as in the case of sushi), that can objectively facilitate the permanence and spread of zoonotic agents, especially of a parasitic nature (anisakiasis) ( ). the popularity and extensive presence of pets are cultural phenomena subject to social and economic circumstances; in a limited minority of cases, they are species bred for exhibitions, business or commercial purposes, and thus subject to various contacts and frequent movements; more often, they are animals with which people develop a social and affectionate bond that goes well beyond the mere no- tion of economic value ( ). cats and dogs are naturally the most widespread domestic animals ( % of us households include at least one cat or dog) and their presence generates bene- ficial effects on the physical and mental health of their owners, both in everyday life (more motor activity in the elderly and emotional support for the lonely), and in areas defined as “co-therapeutic”, like pet therapy ( ); in these cases, the pre- sence of the animal makes it possible to establish a channel of active communica- tion between patient and physician, with the intermediation of the animal, whose healthiness is a fundamental requirement, especially for groups of people potentially immuno-compromised, like children, the elderly and immuno-depressed (hiv and antiblastic-treated patients) ( - ). m a ny p e r s i s t e n t z o o n o s e s r e m a i n cyclically active and still potentially dangerous for public health despite all the surveillance plans implemented; in , and for the first time in europe, the prevalence of campylobacteriosis overcame that of salmonellosis; this is an “indirect cost” of the economic crisis – campylobacter jejuni is mainly found in chicken meat, whose consumption has risen worldwide in the current scenario, due to a lower market cost, and to the de- triment of other, more expensive protein sources ( ). emerging zoonoses the definition “a zoonosis that is newly recognized or newly evolved, or that has occurred previously but shows an increase in incidence or expansion in geographical, host or vector range”, recognised and adopted internationally, underlines that it is no longer possible to limit the concept of “emerging zoono- ses” only to diseases that originate from tropical or developing areas, or to unde- restimate their potential spread. indeed, most recent data demonstrate that zoonotic diseases are gaining ground p r e c i s e l y i n t h e m o s t i n d u s t r i a l i s e d countries, bringing about new problems or causing the resurgence – with different epidemiological traits – of infections far too hastily considered eradicated (bovi- ne tuberculosis and brucellosis); where population density creates favourable environmental conditions, microorgani- sms find a new chance to emerge, as has occurred repeatedly in north america and europe ( ). the emergence and re-emergence of zoonotic diseases may be detrimental considering the level of morbidity and emergence and re-emergence of zoonoses copia esclusiva per: prof. vittorio sala mortality of animals destined to food production ( ); recovery actions inten- ded to prevent, contain and eradicate the disease are always, from an institutional viewpoint, linked to the public veterinary structures, both at a domestic and inter- national level. such actions include, first of all, any necessary epidemiological sur- veys, then the implementation of quaran- tine and health surveillance systems, and finally compensation for damage ensuing from the forced elimination of animal stock and the resulting production loss. in underdeveloped countries and, to a lesser extent, in emerging ones, the more agricultural and food production is intended to satisfy local demand, the more veterinary structures are insufficient; only countries that have gained access to the export market have had to enhance veterinary infrastructures to satisfy the requirements of importing countries. as a consequence, it was possible to recognise new diseases, or known ones in previously unmapped areas, and the global epidemiological design of diffe- rent zoonoses also improved ( ); the scenario is totally different, instead, in the event of sudden political changes (coups) or conflicts between neighbou- ring countries. therefore, the economic impact of a zoonotic disease depends on a multitude of factors, but the perception of its actual severity – often misled by inaccurate or incompetent information – may cause a disproportionate social response, or one impacting the market of animal-derived foodstuffs (e.g., the crisis in the avicul- tural sector due to excessive scaremonge- ring vis-à-vis ‘bird flu’) ( ). interdisciplinary perspectives the spread and clinical treatment of zoonotic diseases in animals and man overlap, in time and quantity, in ways of exposure, evolution of symptoms and control actions; therefore, this “epide- miological model” may be the key to an updated interpretation of infectious diseases in humans and animals. as far as man is concerned, the mor- tality rate of emerging zoonoses is relati- vely low, especially when compared with that of other infectious diseases; in fact, we can safely say that none of the most recent evidence exhibits particularly high mortality rates – yet the impact cannot be measured solely by the number of cases of infection or death. a telling example is the economic and social damage that avian influenza cau- sed to local avicultural production, even in countries where no locus of infection was reported; and again, the decline in trade and tourist flows from and to the most seriously affected regions, with such severe socioeconomic consequences that political stability was jeopardised. to be effective in similar circumstan- ces, any prevention and control action should be carried out in a concretely interdisciplinary context that does not s e p a r a t e t h e m e d i c a l a n d ve t e r i n a r y domains, in light of the fact that the pa- thogenic activity of microorganisms is not species-dependent; if public health and public veterinary health are closely linked, knowledge and information can be pooled and used for mutual benefit. whether the discourse is about emer- ging or re-emerging zoonoses, comparati- ve infectivology can be – especially in the epidemiological and diagnostic domain – the “new frontier” of public health, and prevention through risk analysis is bound to become a common practice; it can encompass the different aspects in the animal-human-food of animal origin relationship in an urban context, but also the professional risk in the primary and secondary production areas, relying on the exchange of constantly updated dia- gnostic and clinical information. v. sala et al. copia esclusiva per: prof. vittorio sala riassunto emergenza e riemergenza delle zoonosi. contesto e conseguenze le zoonosi sono state e sono ancora considerate soltanto come un “problema veterinario”. invece, la lettura delle emergenze, riemergenze e persistenze è più facilmente comprensibile considerando il “confronto” patogeno-animale-uomo. alle proprietà di espressione dell’agente patogeno sono state correlate tre interfacce: uomo-ambiente, animale-ambiente e uomo-animale. animali e uomo, possono essere serbatoi o vettori degli agenti patogeni, mentre le interfacce possono amplificare l’impatto clinico in tutte le specie coinvolte. l’andamento delle malattie è sovrapponibile negli animali e nell’uo- mo per infezione, clinica e controllo; perciò, questo “modello epidemiologico” può essere la chiave per una lettura aggiornata delle malattie infettive dell’uomo e degli animali. gli interventi di controllo e prevenzione dovrebbero realizzarsi in un ambito interdisciplinare, senza separare il settore medico da quello veterinario e tenendo conto che l’attività patogena dei microrganismi è indipendente dalla specie; infine, se sanità pubblica e sanità pubblica veterinaria sono strettamente connesse, conoscenze e informazioni possono essere messe in comune e utilizzate a reciproco vantaggio. references . steinfeld h. the livestock revolution: a global veterinary mission. vet parasitol ; ( - ): - . . brown c. emerging zoonoses and pathogens of public health significance – an overview. rev sci tech off int epiz ; ( ): - . . macpherson cnl. human behaviour and the epidemiology of parasitic zoonoses. int j para- sitol ; ( - ): - . . delgado cl. rising consumption of meat and milk in developing countries has created a new food revolution. j nutr ; 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( ): - . corresponding author: prof. vittorio sala, department of veterinary science and public health (divet), university of milan, via celoria , milano, italy e-mail: vittorio.sala@unimi.it v. sala et al. copia esclusiva per: prof. vittorio sala quality physical environment in paediatric wards: designer's creation versus users’ satisfaction procedia - social and behavioral sciences ( ) – - © published by elsevier b.v. selection and/or peer-review under responsibility of centre for environment-behaviour studies(ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia doi: . /j.sbspro. . . aice-bs famagusta asia pacific international conference on environment-behaviour studies, salamis bay conti resort hotel, famagusta, north cyprus, - december quality physical environment in paediatric wards: designer’s creation versus users’ satisfaction roslinda ghazali and mohamed yusoff abbas* centre for environment-behaviour studies (ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, shah alam, selangor, d.e., malaysia abstract quality physical environment could contribute towards the creation of a healing environment. this paper, an outcome of an ongoing research on physical qualities of malaysian paediatric wards investigated the design trend upon users’ satisfaction. two uk nhs evaluation toolkits were used to evaluate the quality of the physical environment and the users’ satisfaction levels. data collected involved paediatric wards in eight hospitals and respondents comprised of nurses and patients. results revealed that the positive design trend was not in tandem with the users’ satisfactory level. lack of understanding upon users’ needs is suspect in designing those wards. © published by elsevier ltd. selection and peer-review under responsibility of centre for environment- behaviour studies (ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia keywords: quality physical environment; users’ perception; optimal healing environment; quality of life. . introduction designers have been reminded for decades to understand about the users’ needs, rather than relying on assumptions in their design process (deasy & lasswell, ). the cautionary reminder should be heeded * corresponding author. tel.: + . e-mail address: myusoff @salam.uitm.edu.my. available online at www.sciencedirect.com © published by elsevier b.v. selection and/or peer-review under responsibility of centre for environment- behaviour studies(ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia open access under cc by-nc-nd license. open access under cc by-nc-nd license. http://creativecommons.org/licenses/by-nc-nd/ . / http://creativecommons.org/licenses/by-nc-nd/ . / roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – especially when designing environments for children, who are more influenced than adults of the physical environment. this is crucial within a healing environment. healing was known by different approaches more than , years ago, termed as complementary and alternative medicine (huelet, ). a global interest towards creating the healing environment influenced the health ministry of malaysia since the s for a more child-friendly, cheerful and safe hospital (mathews, ). “healing environment” can be described as the physical and non-physical environments that support the recovery or the healing process. a conducive healing environment as established in the literatures helped paediatric patients to heal faster, reduced the length of stay in the wards and enhanced their quality of life. previous papers presented, based on the authors’ ongoing research pertaining to the quality of the physical environment in malaysian paediatric wards had focused on various aspects pertaining to the healing environment. the present paper specifically focused on the users’ – both staffs and patients - perception about the quality of the physical environment of those wards. the purpose being to depict the trend in the design of such wards, with the objective of identifying design factors that could impede the creation of a more conducive healing environment. . literature review the literatures reviewed concerned the healing environment framework and users’ perception in terms of healthcare environment. . . healing environment framework the samueli institute based in united states, a medical research organization exploring the science of healing has developed the optimal healing environment (ohe) and described it as “the social, psychological, physical, spiritual, and behavioral components of healthcare support and it can stimulate the body’s innate capacity to heal by itself” (ananth, , p. ). the framework involved two major parts - inner and outer environment which comprised of seven components namely developing healing intention, experiencing personal wholeness, cultivating healing relationship, practicing healthy lifestyles, applying collaborative medicine, creating healing organization and building healing spaces (bhs) as shown in figure . fig : the optimal healing environment (ohe) framework. (source: sita ananth ( ), healing environments: the next natural step, explore, vol. , no. , p. ) roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – . . author’s research framework this research paper relates to the seventh component, the bhs which involved nature, colour, artwork, architecture, aroma and music. being of architectural background, the authors felt that it was necessary to modify the bhs or architectural component into exterior and interior environments as shown in figure . fig : authors’ modified architectural framework based on the ohe (ananth, ) . . . exterior environment the importance of the garden, playground, artwork and sound of nature in contributing towards the healing environment has been reported in several literatures. the creation of a healing garden by providing a space of calmness and serenity promotes emotional relief of the users from their daily stress and anxiety (vappa, ). the playground (prevenslik, ), artwork (eisen et al, ) and sound of nature (vapaa, ), in integration with the garden do create a sense of welcome and benefits in particular to the paediatric patients by reducing stress and promote physical fitness during their play in the playground. as such, physical accessibility rather than just views to the area would be most welcomed by users. . . . interior environment interior environment is the environment which supports the creation of a healing environment and it comprised of features such as conducive ambience, general safety, appropriate ergonomics and therapies. elements of the conducive ambience include appropriate colour scheme, outdoor view, furniture arrangement, space for privacy, lighting and artwork. the integrations of proper colours and artwork play a role in the healthcare environment. it creates a dramatic environment which gives positive impact, relieve stress and distract illness from paediatric patients (kellet et al, ). colours also help to create cheerful and better environment (hill, ). in relation viewing outside, patients who are exposed to nature would reduce stress, facilitate recovery from architecture exterior interior garden playground artwork sound natural lighting artificial lighting ambience lighting artwork colour furniture arrangement outdoor view space for privacy safety ergonomic therapies art therapy music therapy aromatherapy pet therapy roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – illness and improve their moods. for example, patients warded in rooms with window helped patients to determine the time of day and weather outside and also enhance patients and family satisfaction and the overall quality of care (phiri, ). furniture arrangement creates positive moods amongst patients. for example, comfortable armchairs and a good bed support healing process in the healthcare environment. furniture such as parent’s bed and bedside equipment system would also reduce stress to both parents and staff (smith et al, ). creating effects of environmental “humanization” in paediatric hospital benefited patients on reduced stress (bonaiuto et al, ). single room occupancy allows private conversation to patients, experience of privacy, less noise and quality of sleep. greater bedroom size enables the room to be multi-functioned and also promotes the well-being and the quality of life of patient and staff in order to produce a healing effect (phiri, ). natural lighting or daylight benefits on the psychological effects to patients. it gives an impact of daylight on patients’ psychology and physical diseases to recover from illness faster (phiri, ). meanwhile, artificial lighting also plays a role in improving and increasing the productivity and health well-being by creating comfortable ambience and positive distraction in the healthcare setting, and increases the productivity among staff (dutro, ). designer of children’s hospital should consider facility design such as safety and ergonomics in order to meet the users’ satisfaction. tips and safe handling for children should be provided because children are constantly at risk to falls and injuries during their stay in the hospital (warda, ). effective ergonomic design by creating a home-like environment would reduce stress among patients and parents in terms of safe patient handling (joseph, ). alternative therapies such as art therapy (camic, ), music therapy (routhieaux and tansik, ;), aromatherapy (vappa , ;) and pet therapy (braun et al, ) have been revealed to aid healing and widely integrated into the healthcare environment. . research design . . strategy post-occupancy evaluation (poe) was chosen as the strategy for the study. overall, paediatric wards in eight malaysian hospitals located in both urban and non urban areas were involved. to depict the design trend of the wards, the main criterion for the selection of the hospitals chosen was the year it was built which represented the design of each of the last three decades - the s, s and s as shown in table . due to the confidentiality agreement, name of the hospitals could not be revealed and thus coded with the first two alphabets, followed by the location in brackets with “u” indicating “urban” and “nu” as “non-urban”, and followed by the year it was built. one was built in the s, another was built in the early s, three others were built in the late s while the other three were built more recently within the last five years. . . methodology the methodology for data collection involved documentation, personal site visits, evaluation toolkits and questionnaires. the documentation involved in-patient data, floor plans of the wards and authors’ photographic evidence from the site visits. the in-patients data acquired from the hospitals’ record departments consisted of information about the patients’ demography, length of stay and type of sickness (diagnosis). for the present study, the data for was used as the basis for analysis. th photographic evidence taken by the authors included different corners and spaces to visualize the ambience of the paediatric settings. roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – the evaluation toolkits used were of uk’s nhs, namely the aedet (achieving excellence design evaluation toolkit) evolution and aspect (a staff and patient environment calibration toolkit) evaluation toolkit (ds estates and facilities, a &b). the aedet evolution was used to evaluate the physical environment through a series of statements which consisted of three main areas namely impact (character & innovation, form & materials, staff & patient environment, urban & social integration), build quality (performance) and functionality (use, access, space). the aedet forms were filled up by the authors based on their personal on-site observation of the physical environment of the wards. the aspect evaluation toolkit, which evaluated users’ satisfaction levels has been tested upon more than research projects. for the purpose of the present study, it was transformed and modified into survey questionnaires. respondents involved users of the paediatric wards which included – patients / carers, nurses and other staffs. overall, the survey involved nurses and patients as tabulated in table . in investigating the patients perception upon the physical setting of the wards, floor plans were used to locate the beds in relation to the position of the windows and doors. this could synchronise with the particular users’ response pertaining to issues such as the influence of view to outside, natural lighting, ventilation and accessibility to outside. table : hospitals involved based on the year built and number of respondent . . . procedure consent from the ministry of health (moh) and approval from the national medical research institute (nmri) was first obtained through formal applications with support from each of the hospital’s director and paediatrician. preceded by initial briefings about the setup of the hospitals, representatives from the hospitals accompanied the researchers during the site visits and provided responses to spontaneous general enquiries about the physical environment of the wards. permission was further granted to obtain the in-patients data from the hospital record department. data collected involved personal on-site observations, and photographic documentations about the facilities provided and of the ambience. the aedet evolution forms were then filled. visits to the hospitals were done once and lasted about hours per hospital. the researchers briefed the respondents about the purpose of the study and two different sets of questionnaires for thirty respondents were then distributed to staffs and patients accordingly. responses of the questionnaires were then collected after a hospitals year built area respondent (staff) respondent (patients) kg urban ip urban kj urban pa urban sg non-urban sd non-urban ag non-urban sb non-urban total respondent roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – period of two weeks. floor plans of the wards were obtained within three to four weeks from the moh’s appointed services and maintainance company, radicare sdn bhd. . . . limitation and delimitation limitation for this study involved time constraint in obtaining approval from moh and nmri. in- patients data obtained were delayed due to the confidentiality of the data which had to be screened by the administrative officer before being released. while some of the data obtained were incomplete, for example, missing names and patients registration numbers. in addition, the hardcopy data received had to be transformed into softcopy for the data analysis. questionnaires feedbacks involved co-operation from the parents, for example, they were more concerned with the wellbeing of their sick children rather than responding to the questionnaires. the delimitations focused on data retrieved upon paediatric patients of the - years old age group and confined to - bedded hospital wards. . findings and discussions . . the aedet (achieving excellence design evaluation toolkit) evolution the data collected from the aedet was analysed to compare the design quality trends amongst the wards. the weightage for the best score is “ ” while the poorest score is “ ” a score of “ ” was considered the average. overall, the aedet analysis showed a positive design trend of the hospitals built since the last three decades. except for the older kg (u)- and ip(u)- built before , all post- hospitals built scored above average in all the three main areas (impact, build quality, functionality) analysed, with the more newer ag(nu)- and sb(nu)- scoring above “ ” in all areas. amongst the eight components of the main areas analysed, only “use” had not shown any significance improvement in trend, although being evaluated still as above average. fig : the aedet (achieving excellence design evaluation toolkit) evaluation - summary of findings roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – . . the aspect (a staff and patient environment calibration toolkit) - users’ satisfaction . . . responses from staff the aspect which evaluated satisfaction levels amongst the staffs were divided into four main categories: - view to outside; nature & outdoor; comfort & control; and staff facilities, with several additional aspects per category. altogether, staffs responded to the questionnaires. overall, the analysis revealed that the majority of the staffs were not satisfied with the majority of the categories in the oldest kg (u)- and surprisingly, in the newest sb (nu)- , as shown in figure (a). this does not seemed to correspond with the evaluation of aedet, which indicated a positive trend over the last three decades. the staff seemed to be most satisfied with the older kj (u)- , followed by the newer ag (nu)- . figure (a): the aspect (a staff and patient environment calibration toolkit). summary of findings (staffs, n= ) . . . responses from patients (parents/carer) similar to the first three categories that involved the staff, additional categories of the aspect for the patients (parents/carers) included privacy, company & dignity; legibility of place; interior appearance; and facilities for users. altogether, users responded to the questionnaires. overall, as compared to the staffs, the users’ satisfaction level again seemed not to correspond more with the aedet as shown in figure (b). amongst the users, the most satisfactory hospital was pa (u)- rather than the newer hospitals. figure (b): the aspect (a staff and patient environment calibration toolkit). summary of findings (patients, n= ) criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . kg(u)- ip (u)- kj (u)- pa (u)- sg (nu)- sd (nu)- ag (nu)- sb (nu)- catogaries . facilities for the users . views . nature & outdoor . comfort & control .privacy, company & dignity . legibility of place . interior appearance h o s p it a l s criteria . . . . . . . . . . . . . . . . . . . . kg(u)- ip (u)- kj (u)- pa (u)- legend: sg (nu)- score of & (below average) sd (nu)- ag (nu)- score of & (average) sb (nu)- score of & (above average) catogaries . views . nature & outdoor . comfort & control . staff facilities h o s p it a l s roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – . . . correlation between aedet and aspect evaluation for the aedet and aspect were done by different evaluators, - the aedet evolution by the authors, while the aspect by the users, hence the possibilities of discrepancies in the scoring. this was further revealed with the most satisfactory hospital chosen by the staffs, kj (u)- and pa(u)- were amongst the most highly rated in the aspect analysis by the users. nevertheless, as mentioned earlier, both the authors are of architectural background, hence of similar disciplines with the designers of the hospitals built. both factors seemed in agreement in the positive design trend for the betterment of the users. however, the ultimate users felt otherwise. . summary and conclusion there exists a positive trend in the design of the physical environment of paediatric wards in malaysian hospitals over the last three decades. however, the positive trend is not in tandem with the satisfactory levels of both the users – staffs and patients. the resultant ‘mismatch’ of assumed quality physical environment created with users’ unsatisfactory levels could indicate that users’ needs are still not thoroughly understood by designers. thus, it is suggested that the design brief used for the creation of the physical environment should include a thorough understanding of the users’ needs, rather than based on assumptions by the designers. acknowledgements our heartiest gratitude to the malaysian ministry of higher education for the research grant awarded for this study. special note this paper was developed further from the paper published by the same authors in healing environment of pediatric wards, procedia - social and behavioral sciences, , , - , elsevier, available online september . earlier findings were revealed in the proceedings of aice-bs , grand margherita hotel, kuching, malaysia, - december , the proceedings of ace-bs , riverside majestic hotel, kuching, malaysia, - july , while the pilot study was revealed in the proceedings of ncebs , shah alam, malaysia, - november . references ananth, s., ( ). healing environments: the next natural step. explore, ( ), pp . bonaiuto, m., bonnes, m. and fornara, f., ( ). effects of architectural humanization of paediatric hospital on users. the proceeding of iaps: - culture, quality of life - problems and challenges for the new millennium conference - july , - braun, c., stangler, t., narveson, j. and pettingell, s., ( ), animal-assisted therapy as a pain relief intervention for children, complementary therapies in clinical practice, ( ), pp . camic, p. m., ( ). playing in the mud, health psychology, the arts and creative approaches to health care. journal of health psychology, ( ), - 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for health design, . kellett, p., coleman, s., collins, p., macnaughton, j., purves, g., suokas, a. and white, m., ( ). health, art and design: evaluation of a new hospital environment. the proceeding of iaps: - health, art and design: evaluation of a new hospital environment conference - july , cd-rom: isbn - - - . mathews, e., ( ), klh to be hospital for women and children, star, june . phiri, m., ( ). one patient one room – theory and practice: an evaluation of the leeds nuffield hospital university of sheffield. nhs research project, school of architecture, arts tower, sheffield, pp . prevenslik, n., ( ). employees join together to make therapeutic playground a reality. the exceptional parent, boston, ( ), pp , . refractory depressions, journal of affective disorders: ( ), - routhieaux, r.l. and tansik, d.a., ( ). the benefits of music in hospital waiting rooms. the health care supervisor, ( ), - . smith, a.b., hefley, g.c. and anand, k.j., ( ). parent bed spaces in the picu: effect on parental stress. paediatric nursing, ( ), - . vapaa,a.g., ( ). healing gardens: creating places for restoration, meditation, and sanctuary. what are the defining characteristics that make a healing garden? by ma virginia polytechnic institute and state university, college of architecture and urban studies. warda, l., ( ). development and validation of a safety audit for paediatric health care facilities: first steps toward making the hospital a safer place for children. the university of manitoba (canada), dissertation, , pp . effect of pets on spousal bereavement over a two-year period; the effect of pets on spousal bereavement over a two-year period by vicki ellen bernstein a thesis submitted to the faculty of the university of utah in partial fulfillment of the requirements for the degree of master of science in gerontology college of nursing the university of utah august copyright co vicki ellen bernstein all rights reserved the university of utah graduate school supervisory commitiee approval of a thesis submitted by vicki ellen bernstein this thesis has been read by each member of the following supervisory committee and by majority vote has been found to be satisfactory. nj r'. a .. . /s� t;'j- i�, vi . j' .... / ' dale a. lund the university of utah graduate school final reading approval to the graduate council of the university of utah: i have read the thesis of vicki ellen bernstein in its final form and have found that ( ) its format, citations, and bibliographic style are consistent and acceptable; ( ) its illustrative materials including figures, tables, and charts are in place; and ( ) the final manuscript is satisfactory to the supervisory committee and is ready for submission to the graduate school. date approved for t ,ajor department / �l \ ' "-- ";i ) ... _ . ... ix \ ,t < ........ �.� =_ . y;?-t.-&d-·· linda k. amos chair/dean approved for the graduate council t &c. {u .x-:b-.:j ann w. hart dean of the graduate school abstract the purpose of this thesis was to examine the effect of pet ownership on bereavement outcomes over a -year period. one hundred ninety-two individuals, age to years old, were divided into categories and type of pet ownership and were interviewed six times during years of bereavement. questionnaires were completed that measured bereavement outcomes (perceived stress, perceived coping, depression, and loneliness). respondent-generated responses to pet helpfulness also were measured. findings indicate that pet ownership does not seem to affect bereavement outcomes over time. loneliness was the response given most frequently in all pet categories to the question: "what has been the single greatest problem for you related to the death of your spouse?" when compared to mixed species' owners, dog owners had significantly higher stress levels at time . compared to cat owners, dog owners were significantly more depressed than cat owners at time . dog owners had decreased depression levels over time. cat owners had higher perceived coping ability over the last months of bereavement. a majority of pet owners reported that their pets helped them through the bereavement process because of the companionship they provided and, in some cases, a greater sense of protection. the findings of this study suggest that the role of pet ownership in bereavement is complex. extensive research that examines pet ownership over the life course is needed to understand this phenomenon. v table of contents page abstract ......................................... iv list of tables .................................... viii acknowledgments ................................. ix chapter i. introduction .................................. bereavement research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ii. literature review . . . . . . . . . . . . . . . . . . . . . . . ....... the human-animal bond . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . historical background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . pet-facilitated therapy ............................... pet ownership .................................... pet ownership and the elderly .......................... pet ownership: an application of social support- stress buffering model .............................. the role of pets in bereavement ........................ summary and research questions . . . . . . . . . . . . . . . . . . . . . . . . iii. methods..................................... introduction ..................................... sample recruitment ................................ procedure ...................................... measures ....................................... data analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . chapter page iv. results ...................................... patterns of pet ownership and bereavement outcomes . . . . . . . . . . . types of pets .................................... how helpful are pets . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . v. discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . discussion of results ............................... limitations of the study .............................. recommendations for future research . . . . . . . . . . . . . . . . . . . . . conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . references ....................................... vii list of tables table page . sample characteristics (n = ) ....................... . baseline mean scores for socioeconomic status, education, employment age, and years married according to pet ownership categories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . correlations of age and employment with stress, coping, and depression over six time points ..................... . stress levels over two years of bereavement broken down according to categories of pet ownership .................. . coping levels over two years of bereavement broken down according to categories of pet ownership .................. . depression levels over two years of bereavement broken down according to categories of pet ownership .............. . differences in stress levels over two years between dog, cat, or mixed species' owners ......................... . differences in coping levels over two years between dog, cat, or mixed species' owners .... . . . . . . . . . . . . . . . . . . . . . . differences in depression levels over two years between dog, cat, or mixed species' owners ..................... . sample responses of bereaved pet owners to the question: "have your pets been helpful to you?" ................... acknowledgments my heartfelt appreciation goes to dr. michael s. caserta, dr. julia j. kleinschmidt, and dr. dale a. lund, supervisory committee members, for their caring and support throughout my academic pursuit. dr. caserta, chair, has seen me through the best and worst times while completing this thesis. he never lost faith in my ability to succeed even though he repeatedly had to remind me to believe in myself. i am grateful to him for knowing when to offer assistance and when i needed to learn alone. i appreciate his expertise and patience while explaining certain statistical procedures that allude the predominant right side of my brain. dr. lund shared his passion for gerontology. he constantly shares that passion with gerontology students. his warmth and enthusiasm motivated me to continue to study the aging process. also, i thank him for allowing me the opportunity to get to know him better and to gain an appreciation for the research process through the "video respite" project. i would like to thank dr. kleinschmidt whom i met years ago as a student in one of her classes. her incredibly warm spirit, compassion, and relaxed wisdom allowed me to seek her advice over the years. those are very special gifts. a special thank you goes to the following individuals in the gerontology center, college of nursing, the university of utah: denise meeker, executive secretary, for her word processing expertise, enormous patience, and never-tiring desire to help others. denise also has a marvelous sense of humor, which came in handy more than once. without her help, i would not have finished this project. pat latkowski always wanted to know if there was anything she could do to help me. her wisdom and zeal for personal growth and development depict the gerontology center's definition of a "successful ager." i will miss you all. i would like to acknowledge two special dog friends: sooner, my devoted companion for years, and brody, with whom i had occasion to dog -sit. their untimely deaths during the writing of this thesis was a personal and painful lesson in grieving. i will remember sooner for her remarkable ability to give love unconditionally and constantly. i will remember the way she waited for me on many of the long hikes we took together in the mountains and the desert. there are two relatively new friends in my life that i would like to acknowledge for allowing me to feel comfortable and like a family member in their home. my love and thanks to nancy rosen and larry newman who offered me a safe, warm place to stay while i finished my thesis. they will always be welcome in my home and will never need a formal invitation. i also would like to thank their dog maggie and cat ziggy for the many hours of nurturing they provided in the absence of my own dog and cat. i thankfully acknowledge the love my parents have given me over the years; x i hope to always make them proud of me. they both have always been there for me, especially when the going got tough. lori and kenny, my sister and brother, i cherish their love. finally, i would like to thank my husband and friend, chris, who never stopped believing in me from the moment our eyes met almost years ago. i will forever love and cherish the time we have spent together and hope and pray that we will have many more healthy loving years together. he has shown me the meaning of love. finally, i would like to thank the university research committee for the graduate research fellowship, which allowed me to finish this thesis. xl chaffer i introduction the objective of this thesis was to provide health care professionals with a better understanding of the role that pets play in the bereavement process and to learn about the potential for using pets in bereavement interventions for older adults. the specific problem investigated was to determine if pet ownership over years of bereavement acts as a coping resource to noninstitutionalized older grieving spouses. if the human-animal bond is beneficial to grieving spouses, then pet ownership may positively influence well-being outcomes and decrease feelings of loneliness and depression. application of such a finding would be the use of pets in specific therapeutic situations in order to help older bereaved spouses. there are several potential benefits of the human-animal bond as an intervention to grieving spouses such as reducing stress, providing companionship, promoting feelings of well-being, and decreasing feelings of loneliness and depression. the goal is to assist older bereaved adults to return to a high level of functioning and satisfaction with their daily lives. this goal is consistent with the assumption (a) that interventions can uphold the belief that life is a process of growth and continual development and (b) that eventual adaptation can take place even during difficult times following the loss of a spouse. pet-facilitated therapy in appropriate situations could be a useful tool for future counseling. prior to developing extensive interventions, however, one needs to know more about the benefits and limitations of pets in the long-term coping process of older bereaved spouses. research on the therapeutic benefits of pet ownership is in its infancy, but conjugal bereavement has been the focus of extensive research because it is stressful, disruptive, and occurs in most everyone's lives. stroebe, stroebe, and hansson ( ) considered conjugal bereavement to be "one of the most widely experienced life events" (p. ). spousal bereavement research has focused much attention on the negative stress outcomes of the grieving spouse. spousal bereavement has received considerable study internationally, as well as by researchers from numerous disciplines, including anthropology, epidemiology, sociology, psychology, gerontology, and other health care professions. consequently, there are numerous studies about the impact and effects of losing a spouse such as morbidity, mortality, physician utilization, drug consumption, and social changes. the following is a sampling of the range of research that has been examined across disciplines. bereavement research death of a spouse presents serious risks to the physical and psychological health and well-being of the survivor (glick, weiss, & parkes, ; parkes, ). several studies have revealed higher morbidity and mortality among widows and widowers when compared to others their age and sex (helsing, zsklo, & comstock, ; maddison & viola, ). other studies have reported an increase in physician utilization and drug consumption among bereaved persons (parkes, ; siegel, ). the need for research on spousal bereavement is evidenced by the detrimental and widespread effects of bereavement on the surviving spouse. different disciplines approach bereavement research from their own perspective. the following studies are examples of different approaches to comprehending the bereavement process. a classic example of the epidemiologist's approach to bereavement research was a large scale survey conducted by kraus and lilienfeld ( ). researchers conducted a cross-sectional analysis of mortality among the bereaved by examining demographic data fronl the office of vital statistics in . they found significant differences in mortality risk between the widowed and nonwidowed. much of this increased risk has been attributed to the stress, anxiety, and loneliness often experienced by surviving spouses-especially during the first years following the death of a spouse (akiyama, holtzman, & britz, ). research indicates a strong relationship between stress and coronary artery disease. a longitudinal study by parkes, benjamin, and fitzgerald ( ) reported that mortality was significantly increased in widowers with circulatory disorders during the first months of bereavement. a sociologist's approach in understanding spousal bereavement may be to examine the impact of widowhood on access to social roles and in constructing new identities. glick et ale ( ) found that after the first year of bereavement most widows had established a very different friendship network than their friendship network from married years. this research revealed the broad impact that bereavement can have on a person's life. psychologists attempt to explain the potentially adaptive functions of grief for the social group. for example, psychology research often focuses on understanding the individual variations in adults' reactions to bereavement. parkes and weiss ( ) studied average widows and widowers and found that favorable outcomes from bereavement was a function of marital happiness. sixty- one percent of the study's participants who self-reported their marriage as conflict- free had successful recovery from bereavement. gerontologists have examined spousal bereavement from the perspective of cumulative life losses and challenges. they examined the coping strategies that people use throughout their lives. gerontologists are interested in the biopsychosocial complications of conjugal grief. the conjugal grief experience is particularly stressful because the surviving spouses are required to deal with concurrent disruptions in their primary support networks, social status, and finances. positive adjustment to bereavement also has been found to be associated with financial security (jacobs, hanson, berkman, kasl, & ostfeld, ). the bereavement experience is typically stressful and disruptive and is one of the most widely experienced life events. according to census data, greater than % of females age years and older and % of males the same age have become widowed (u.s. bureau of the census, ). therefore, learning how to manage the stress produced by the loss of a spouse, especially among older adults, is a critical concern for health professionals. the need to develop preventive postbereavement programs that reduce the negative effects of bereavement is widely recognized. one coping resource that has received limited attention is the role that pet ownership has on grieving spouses. lund, johnson, baraki, and dimond ( ) found a slight negative impact of pet ownership on self-reported coping levels of older bereaved spouses during the early periods of bereavement. they suggested that pets cannot be considered as substitutes for human support during the first months of grieving. even though this study used the same data set that lund and his colleagues used, it makes a unique contribution to the knowledge about pet ownership in bereavement in two aspects: . this study examined bereavement over months as opposed to months. . pet ownership status was expanded to five categories. the five categories are (a) consistent pet owners-respondents who owned pets throughout the entire -year study; (b) consistent nonpet owners-respondents who never owned a pet throughout the -year study; (c) new pet owners-respondents who acquired a pet after the study began; (d) no longer pet owners-respondents who owned a pet at the onset of the study and who, subsequently, no longer owned a pet; and (e) sporadic pet owners-respondents who owned pets at various times during the -year study. chapter ii literature review this chapter discusses the current literature relevant to this study, including the nature of the human-animal bond, historical background, pet-facilitated therapy, and pet ownership among the elderly. the plausibility of pet ownership in bereavement as an application of the social support stress-buffering model is discussed, along with the most current research findings on the role of pets among the bereaved. the chapter concludes with a summary and a description of the research questions. the human-animal bond human beings have always felt a special kinship with animals. a mutually beneficial relationship has existed throughout time and is critical to the health of all species. in prehistoric times, animals were depicted in drawings as elements necessary for humankind's well-being and survival. many civilizations have been and continue to be shaped by economic dependence on animals. the health of all living beings depends upon understanding and respecting the bond between species. dr. leo bustad ( ), of the washington state university college of veterinary medicine, explained: plants and animals in our environment are like parts of our body. if we eliminate them, we destroy part of ourselves. people must remain in contact with and relate to the environment throughout their lifetime to remain healthy. a strong people-animal-plant bond is critical to a healthy community. (p. ) historical back&round the therapeutic benefits of animals to humans was first described at the york retreat in . at a time when the insane were treated inhumanely, quaker william tuke established the york retreat based on "christianity and common sense." animals roamed the grounds and were provided for patients to learn self- control by caring for dependent creatures. in , at bielefeld, germany, a healing center for the disadvantaged included farm animals, birds, dogs, cats, and wild game as an integral part of the therapy. in the united states, in pawling, new york, the armyl air force established a convalescent hospital for wounded world war ii air force personnel. as part of their rehabilitation plan, patients were encouraged to work with cattle, horses, frogs, and other farm animals (cusack & smith, ). after world war ii, child psychologist boris levinson ( a) unexpectedly stumbled upon the great advantages of companion animals in therapy. levinson had his dog, jingles, at the office and a client arrived an hour early for an appointment. the client's willingness to interact with the dog eventually proved to be a key factor in his rehabilitation. in former sessions, the child had always remained nonverbal. the child's response to the dog prompted the doctor to realize the potential benefit of using a dog as a bridge between therapist and child. levinson started pursuing a career using companion animals in therapy. he is responsible for establishing boundaries and principles for the systematic study of the effectiveness of companion animals (netting, wilson, & new, ). among the first to evaluate systematically pet-facilitated therapy were corson and corson ( ). in a psychiatric hospital, several psychotic patients were introduced to dogs, and the results were favorable. many uncommunicative and bedridden patients were transformed and eventually discharged. in order to record their progress and quantify patient responses, corson and corson administered a simple questionnaire and videotaped the patient-pet-staff interactions. the results were encouraging; many withdrawn and uncommunicative patients were interacting with the pets. the explanation for the patients' improved status was that the dogs provided unconditional support and friendship to those who had lost social skills and desires. the dogs needed care, feeding, and grooming from the patients. as the patients' responsibility for the pets increased, so did their ability to care for themselves. in the last years, interest in the human-animal bond has exploded worldwide. exploring the diverse relationships that develop between people and animals is the focus of many academicians. universities and veterinary schools have established programs and courses devoted to studying the human-animal bond. the scientific community is accumulating evidence, suggesting that pets may improve the psychological, social, and physical health of people of all ages. pet-facilitated therady presently, therapists use the service of animals to assist with abused children, battered women, prison inmates, the elderly, and those suffering from physical and mental disabilities. the presence of a hamster, rabbit, or cat in a therapist's office provides comfort to patients and allows a safe place for healing to begin. for example, a troubled child who refuses to speak or interact with humans will confide in an animal. animals are routinely taken to hospital care centers and prisons. nursing homes often have resident dogs or cats roaming the halls offering pleasure to the limited lives of the institutionalized. according to brickel ( ), pet-facilitated therapy refers to combining animals with client-directed, therapeutic activities. a variety of settings and animals has been employed with many populations with divergent success. pet therapies that bring animals together with people for their pleasure is called animal-assisted visitations. in order to improve strength, coordination, and endurance, pet therapies in physical rehabilitation programs motivate patients to perform tasks such as walking, grooming, or feeding. throughout the country equestrian programs are designed to challenge the mentally and physically disabled to improve muscular coordination, motor skills, and self-esteem. animal-assisted therapy, also known as pet-facilitated psychotherapy, occurs when a licensed professional introduces a pet into a clinical setting to augment the therapeutic curriculum. the animal often acts as a link between the therapist and client because of its ability to build trust. past studies conducted specifically to determine the value of animals fall into four categories: (a) community/in-residence pets, (b) aninlal-assisted visitation programs in institutions, (c) pets in-residence as mascots in geriatric facilities, and (d) therapist-animal-assisted activities (cusack & smith, ). the relationship between owners and their pets is complex. professionals from a wide variety of disciplines have focused their attention on the potential social, psychological, and physical benefits attributed to the bond between the elderly and animals. there are mixed findings in the research literature on the effects of the human-animal bond. however, much of the research about pet ownership supports the use of pets in many facilities. subsequently, pets are being introduced into many nursing home settings. the idea that pets are good for people has been known for a long time. the belief has existed as fable, but the anecdotal evidence is accumulating. the field of companion animal research has been growing and, consequently, so has the need for more systematic empirical studies. pet ownership it seems intuitive that loving an animal and having that animal love someone back is good for people. however, what really happens when human beings and animals come together? can animals actually lead to improved physical health and emotional well-being? studies of the human-animal relationship found that pets provide warmth, affection, stimulation, and a sense of purpose for their owners and that they enhanced their owner's self-concept (bustad, ; friedmann, katcher, lynch, & thomas, ). this section summarizes what scientific investigations have discovered. studies have shown that blood pressure will drop in the presence of an animal (katcher, friedmann, beck, & lynch ). the data suggest that patients recover from surgery, illness, or injury more quickly because of animal interaction (friedmann, katcher, & meislich ). the elderly who have pets in their lives are more likely to maintain their social skills and health. pet owners also may live longer. serious inquiry into the role of pet ownership began years ago when friedmann et al. ( ) found that postcoronary survival improved significantly if the patient was a pet owner. the study followed subjects with coronary heart disease. they found that year after discharge from the hospital, one third of the nonpet owners died. remarkably, only out of pet owners died. this relationship persisted even when controlling for differences in age, sex, or health status between pet owners and nonpet owners. dog ownership and the physical activity needed to walk a dog was not a factor in survival because owners of other pets had a higher survival rate than nonpet owners. beck and katcher ( ), however, found no difference on the prevalence of coronary heart disease among pet owners, former owners, and those never owning a pet. in a follow-up study, friedmann et ale ( ) conducted a survey of hospitalized pet owners to determine the effects of pet ownership on hospitalization. they concluded that the welfare of the animal was of concern to the patient during hospitalization and that the pets were a motivating force for a speedy recovery for the owner. a study investigating the physiological consequences of communication patterns found blood pressure increased while the subjects talked to other people but dropped when they communicated with animals (katcher et al., ). blood pressure was even lowered by looking at tropical fish. the largest reductions in blood pressure were found in those subjects whose blood pressure was normally elevated. four years later, this finding was confirmed by riddick ( ) who found that viewing an aquarium produced significant reductions in diastolic blood pressure. a sample of noninstitutionalized older adults was placed in a group receiving a fish tank, or in a group receiving weekly visits from people, or a no- intervention control group. findings showed increases in leisure satisfaction and relaxation states as a result of aquarium watching when compared to the other groups. several studies report a positive relationship between pet ownership and human well-being (akiyama et al., ; friedmann et al., ; kidd & feldman, ). other scientific studies report no positive effects of owning a pet on the well-being of humans (lago, connell, & knight, ; lawton, moss, & moles, ). recent studies have found that the level of attachment between pet and owner is related to well-being rather than pet ownership status alone (connell & lago, ; garrity, stallones, marx, & johnson, ; ory & goldberg, ). consequently, multidimensional instruments that measure the attachment of owners to their pets have been developed (lago, delaney, grill, & miller, ). for more details on pet attachment scales, refer to friedmann et ale ( ) or katcher, friedmann, goodman, and goodman ( ), or the more recently developed pet relationship scale (attachment scale) designed by lago, kafer, delaney, and connell ( ). pet ownership and the elderly according to corson and corson ( ), pets provide positive nonverbal communication that is comforting and reassuring to the elderly. other studies indicate that pets provide a sense of safety, security, and protection (katcher et al., ; lockwood, ). support for the beneficial merit of pets in community-based settings with the elderly is limited (brickel & brickel, - ; robb & stegman, ). goldmeier ( ) reported mixed results, indicating that human companionship may be more important than owning a pet. when human companionship is unavailable, however, pets play an important role. although lawton et ale ( ) and robb and stegman ( ) reported no significant differences between pet owners and nonpet owners pertaining to health status, mugford and m'comisky ( ) found that pet owners appear to be more stable than nonowners, had more friends, and were more actively involved in their communities. the purpose of the latter study was to determine the effect of pets upon the social attitudes and mental and physical health of their owners. the sample consisted of elderly pensioners who lived alone in rural areas. two groups were given a plant and two groups received a parakeet. a control group received neither the plant nor the parakeet. owning a television was controlled because the researchers hypothesized that a pet may be less important to television owners because of the sense of interaction that a television provides. all the groups were interviewed and monitored by psychologists and social workers for years. the bird owners showed consistent improvement, particularly on items that concerned attitudes toward people and toward the subject's own psychological health. an intimate bond developed between the owner and the bird. this caring relationship became an important focus and displaced the negative concern of their own medical problems. those who received did not make improvements in their psychosocial environment. the presence or absence of television had no significant effect in the study. mugford and m'comisky's ( ) study is a rare example of longitudinal research on community-based elderly. one major reason why research with community-based elderly is inconclusive in terms of the potential health benefits of pet ownership is because it has been based on cross-sectional designs. the value of pet ownership needs to be examined longitudinally. according to newman and newman ( ), it is one's personal history that becomes a variable in determining the pattern of subsequent life events. therefore, it is necessary to examine an individual's previous relationship with pets over the life course in order to determine potential future relationships. studies on the social contributions of companion animals to the elderly have found that pets provide companionship and facilitate socializing with other people (levinson, a, b; mugford, a, b). unfortunately, pets may be the only source of affection, love, and devotion in the lives of many elderly people, substituting for human companionship when none is present. companionship was recognized by pet owners and nonpet owners as the major advantage of having a pet (vogel, quigley, & anderson, ). peretti and wilson ( ) examined self-perceived criteria of the aged regarding their intimate association with their dogs. companionship received the greatest number of male ( ) and female ( ) responses (n = ) regarding the bond between the elderly and their dogs. seventy-five percent ( ) of the males and % ( ) of the females indicated that their dog was their only true friend. the findings indicated the importance of the perception of companionship, an emotional bond, usefulness, and loyalty on the part of the pet owner. some critics are fearful that bonding with an animal may only further distance an already withdrawn patient from human contact; however, no evidence exists to suggest that this is the case. animals have been shown to promote conversation and a sense of camaraderie among hospitalized patients (andrysco, ; brickel, ). for the elderly, the companionship of an animal is especially helpful. leo bustad, veterinarian and pioneer of pet therapy, stated: many older people have discovered that animal companions satisfy some of their greatest needs. pets restore order to their lives; provide a more secure grasp of reality; and link their owners to a community of caring, concern, sacrifice and intense emotional relationships. when older people withdraw from active participation in daily human affairs, the nonhuman environment, in general, and animals, in particular, can become increasingly important. animals have a boundless capacity for acceptance, adoration, attention, forgiveness and unconditional love. although the potential for significant benefits to a great variety of people exists through association with companion animals, the potential seems greatest in the elderly for whom the bond with animal companions is perhaps stronger and more profound than at any other age. (cusack & smith, , p. ) an older adult's emotional involvement with an animal can be as great or greater than it might have been with another human being (cottrell, ; peretti & wilson, ). as friends die or move away, many elderly people find themselves alone. loneliness is often cited as the worst aspect of aging (cavan, ; peretti & wilson, ; tobin & neugarten, ). for many lonely older people, pets can fill the void when human interaction is limited (fogel, ; lorenz, ). according to fox ( ), dogs are the most frequently selected pets of the elderly. some speculate why the elderly choose animals (especially dogs) as pets. one possibility is that dogs and other pets serve as companions, which fills some emotional needs for the owner, and pets also serve some utilitarian purpose for the owner (fogel, ). bustad ( ) found that pets provide warmth, affection, stimulation, and a sense of purpose for their owners, and they also improve their owners' self-concept. goldmeier ( ) studied the relationship between pets and loneliness among older women. the study used four nonprobability samples of elderly women: (a) living alone with pets, (b) living alone without pets, (c) living with others and pets, and (d) living with others and without pets. using the philadelphia geriatric center morale scale, goldmeier found that pets did not have an effect on morale for those persons who lived with others but did have an effect for those living alone. for those living alone, having a pet was significantly associated with higher morale. goldmeier concluded that pet ownership can make a difference, but the difference must be seen in the context of the people who also are part of the older person's living environment. pet ownership: an application of social support-stress bufferin& model the idea that pets are beneficial for people is especially critical as the importance of social support is established. the loss of a spouse often results in negative psychological and social outcomes (osterweis, solomon, & green, ). those elderly who lack social support may benefit from a pet as part of a social support system. in stressful situations such as bereavement, social support has been shown to have a buffering effect by reducing the perception that a situation is stressful (house, ). even though only a small number of bereaved seek professional assistance, those who do often turn to psychologists, social workers, funeral directors, and clergy for help in dealing with death (caserta & lund, ). other informal support resources can be found in family, neighbors, fliends, and community (dimond, lund, & caserta, ; gass, ). social support from others has been found to be helpful but only at a moderate level (dimond et al., ). the presence of a nonevaluative other has been found to be necessary for social support in order to be functional in acutely stressful performance situations (kamarck, manuck, & jennings, ). allen, blascovich, to m aka , and kelsey ( ) concluded that pets may function to reduce stress and its health effects by providing nonevaluative companionship. persons who are single or divorced have a higher prevalence of a wide variety of diseases, including coronary artery disease and behavioral illnesses such as alcoholism, suicide, and mental illness (kitagawa & hauser, ; moriyama, krueger, & stamler, ). increases in mortality and morbidity may be because of the emotional and behavioral effects of the loss of companionship, including depression and loneliness (lynch, ). social support has been shown to impact the course of depression and to act as a buffer against depression (mueller, ). older adults, in particular, are at heightened risk for a variety of physical and emotional problems (berkman et al., ; murrell, himmelfarb, & wright, ). reasons for additional health problems are attributed to changes in health status common in aging and from changes in social situations such as the deaths of friends and relatives. kastenbaum ( ) referred to an accumulation of losses in life as "bereavement overload." because older adults have a higher probability of bereavement overload than younger adults, the bereavement process is likely to be significantly different for each age cohort. researchers theorize that individuals with strong social support systems are less inclined to suffer from the deleterious effects of life stress than persons with weak social support networks (krause, ). in a related study, krause ( ) urged future research to examine how specific types of support buffer the effects of specific types of life stress. henderson, bryne, and duncan-jones ( ) argued that the need for social support varies widely across individuals; thus, stress-buffering models of social support must include an assessment of whether individuals perceive that their need for support has been satisfied. theoretically, the buffering properties of social support work by measurably reducing physiological responses to stressful situations (house, ). some studies have shown that social support decreases the effects of stress on well-being, whereas other studies have failed to find significant effects. social support, particularly qualitative aspects, has played a significant but modest role in bereavement outcomes during the first years after the death of a spouse (dimond et al., ). how does social support decrease the negative effects of stress? kaplan ( ) argued that feelings of self-worth and self-regard are essential for the maintenance of psychological well-being. life stresses such as bereavement affect well-being by eroding feelings of self-worth (pearlin, menaghan, lieberman, & mullan, ). others have theorized that social support operates by strengthening internal locus of control beliefs (krause, ). even though stress tends to chip away at feelings of control, the supportive role of others intervenes to increase feelings of control (caplan, ). the self-esteem of older adults is reinforced when a supportive network provides reassurance of worth, caring, love, and trust (house, ). positive emotional feelings are said to enhance an individual's capacity to adapt to stress (allen et al., ). pet owners describe the relationship with their pets as giving and receiving of devotion (bolin, ), as providing a reason for living and caring, and as providing the bereaved with a sense of safety and a source of interaction and companionship (akiyama et al., ; mugford & m'comisky, ). others describe their pet relationship in terms of decreased feelings of loneliness and depression (levinson, ). wilson and netting ( ) found that people may perceive pets as part of their formal or informal support systems. each of these studies could suggest that aspects of the stress-buffering model could be applied to the role of pet ownership and bereavement. the role of pets in bereavement several studies have suggested that pets may provide a supportive role that buffers people from stress and illness (allen, ; katcher & beck, ). gage and anderson ( ) found that among pet owners experiencing high levels of stress interaction with pets was recognized as valuable for stress management. the data suggest that pets are often a part of older adults' social support system. therefore, owning a pet could potentially buffer bereavement outcomes. the empirical evidence to date, however, has been mixed. lund et al. ( ) examined the effect of pets on alleviating the depression and loneliness among older adults during year of spousal bereavement. these researchers concluded that in the first months pets cannot be assumed to ease the loneliness associated with loss of a spouse. in fact, caring for pets may add to the strain of grieving. arrangements should be considered for the pet's care while many legal and formal rituals are taking place. even though this study did not uncover any beneficial effects of pet ownership on bereavement, the findings were limited. only the first year of bereavement was examined. the study did not focus on the emergence of any effects that may have occurred later in the bereavement process. in a related study, akiyama et al. ( ) investigated the impact of pet ownership on the health status of recently widowed, urban, middle-class women. they reported significant differences between pet owners and nonowners regarding symptom experiences. nonowners reported more symptoms, especially those symptoms with psychogenic components. subjects who did not own pets reported significantly higher medication use. the researchers suggested that attention be given to the role of pets as a means of lowering postbereavement morbidity. siegel ( ) explored the use of physician services in times of stress among the elderly. after controlling for demographic and health characteristics, the pet owners reported fewer doctor contacts over a i-year period than nonpet owners. in particular, dog ownership acted as a buffer from the impact of stressful life events on physician utilization. siegel suggested that there is a qualitatively different relationship between dog owners and owners of other pets. dog owners reported spending more time talking with their dogs and being with them outdoors. these companionship factors might be one reason for the improved health outcomes. bolin ( ) studied the effects of companion animals during conjugal bereavement. this study consisted of newly widowed anglo american women who were contacted by mail to months after the deaths of their spouses. the subjects in one group were bonded dog owners, according to their own assessment, whereas a comparison group did not own any type of pet. the widows were administered the grief experience inventory (sanders, mauger, & strong, ), the personal resource questionnaire that measured levels of perceived social support (brandt, ; weinert, ), and the pet attachment scale (friedmann et al., ; katcher et al., ). the findings revealed significant differences in health when an analysis of the grief experience inventory despair sub scale was analyzed. nonpet owners with a high despair score tended to rate their health good before the death and reported a deterioration in their health after losing their spouse. these widows perceived the death to be very stressful, and their husbands were more likely to have died accidentally or in unexpected places. for bonded dog owners, the place of death and its stressfulness were not reported to be important. these widows also reported no subsequent decline in health after the death of their spouse. bolin ( ) suggested that the pet effect alleviated the sense of despair that is common with grief. of interest is that for pet owners the closeness felt to their spouses, not the length of time married, resulted in more feelings of anger. therefore, bolin suggested that the pet may not be an adequate replacement for the loss of a spouse if the relationship with the husband is perceived to be very close. bolin recommended that families leave pets with the widows and not automatically assume the pet to be burdensome. this finding is somewhat inconsistent with what lund et ale ( ) suggested. summary and research questions the effect of pet ownership on bereavement is complex and not well understood. the present research project expanded the understanding of this relationship by examining the effects that pet ownership has on bereavement outcomes over a -year period. other studies have not followed the subjects' grief reactions for this length of time. also, according to wilson and netting ( ), the literature lacks data on the life course development of an older person's history with pets (ownership, experience, attitudes, and attachments) that may influence pet ownership, pet attachment, and potential well-being in later life. few community-based studies have been found of the role of pet ownership at the time of conjugal bereavement. data available among noninstitutionalized populations have produced inconsistent findings. akiyama et ale ( ) found a positive association between pet ownership and well-being. the bolin ( ) study demonstrated a deterioration in the health of nonpet owners after the loss of a spouse, whereas pet owners reported no deterioration if their health was good. pet ownership did not have any positive effects, however, on psychological functioning during bereavement, according to a study conducted by lund et ale ( ). no studies were found that examine pet effects on conjugal bereavement for greater than year. the overall objective of this study was to investigate the relationship between pet ownership and adaptation during bereavement among non institutionalized older spouses over a -year period. the following research questions were addressed: . are there differences between categories of pet ownership and bereavement outcomes (stress, coping, depression, and loneliness) over a -year period? . are there differences in bereavement outcomes among pet owners according to the type of pet owned (i.e., dog, cat, or bird)? . how do bereaved spouses describe the helpfulness of their pets in dealing with the loss? chapterll methods introduction this study utilized a data set based on the responses of recently bereaved persons + years old. this data set was obtained from the university of utah gerontology center, and permission for its use was granted by the director, dr. dale lund. the data were part of a longitudinal study of bereavement among the elderly that was completed in in the salt lake city area. this initial bereavement study was funded by a grant from the national institute on aging (# roi ag ). the data were subjected to a secondary analysis that examined the role that pet ownership plays in bereavement-related outcomes over years. sample recruitment all participants were residents of salt lake county and were identified through obituary listings in local newspapers. they were contacted within weeks of the death of their spouse. all possible bereaved subjects were randomly assigned to a home interview group (n = ) or a mailed questionnaire group (n = ) in order to test for an interviewer effect. the groups were combined into one sample when no major interviewer effect was observed (caserta, lund, & dimond, ). sixty-one percent of all bereaved spouses contacted during the initial data collection period refused to participate in the study. the reasons for refusing to participate were that they were too busy, too upset, in poor health, or a family member advised against participation. a i-year follow-up telephone random sample of refusers (n = ) indicated that their self-reported health was slightly lower than those who participated in the study. those who did not participate did not differ, however, in age, gender, socioeconomic status, perceived coping, perceived stress, or rate of remarriage (caserta & lund, ). this thesis compared bereaved respondents who were placed into five categories of pet ownership. the five categories are (a) consistent pet owners (n = ), (b) consistent nonpet owners (n = ), (c) new pet owners (n ), (d) no longer pet owners (n = ), and (e) sporadic pet owners (n = ). procedure all respondents were asked to complete questionnaires or were interviewed at six intervals during the first years of bereavement: (a) to weeks (time ), (b) months (time ), (c) months (time ), (d) year (time ), (e) months (time ), and (f) years (time ). with the exception of demographic variables, all six questionnaires were identical and took approximately minutes to complete. one hundred eight respondents ( %) completed all six questionnaires, and participants ( %) completed five of the six questionnaires. twenty-eight ( %) discontinued or dropped out of the study because of illness, lack of interest, moved away, or too busy. four males and females died during the nd year of the study. measures each respondent was identified if they owned a pet by the question: "do you have any pets?" (presently), and "if yes, how many and what kinds?" this question was asked at each data point in order to identify if the respondent's pet ownership status had changed. respondents also were asked to describe the helpfulness of their pets through an open-ended question. the question, however, was only asked at months (time ) and years after the death (time ). the bereavement outcomes examined in this study were perceived stressfulness after death, perceived coping ability, depression, and loneliness. depression was measured by the self-rating depression scale (zung, ), which consists of statements, each relating to a common characteristic of depression. for each statement, the respondents were asked to indicate if it applied to them (a) a little of the time, (b) some of the time, (c) a good part of the time, or (d) most of the time. the range of raw scores is from (low) to (high), with to indicating minimal to mild depression and to indicating moderate to marked depression. a score of or above indicates severe depression. this scale was selected because of its reliability and validity with aging populations (kitchell, barnes, verth, okimoto, & raskind, ). the measure has good internal consistency, as suggested by cronbach' s alpha equal to . (jegede, ). depression is a commonly used outcome measure in bereavement research and, therefore, is appropriate for measuring one aspect of adaptation. perceived coping ability and stressfulness of the death were measured using single-item indicators. respondents were asked: "how stressful has the death of your spouse been for you'?" ( = not at all stressful, = very stressful) the coping question asked: "how well do you feel that you have coped with this situation'?" ( = not at all, = very well) after the time data collection point, the wording of stress and coping items changed to include a time reference; thus, their assessment described their feelings since the previous questionnaire. even though single-item measures have limitations, many investigators have found them to be useful and predictive in social research. previous reports utilizing the stress and coping indicators demonstrated construct and content validity (caserta & lund, ; johnson, lund, & dimond, ). loneliness was measured by responses to an open-ended question, asked at each time period, which read: "what has been the single greatest problem for you related to the death of your spouse'?" this question was content-analyzed. each time a respondent indicated loneliness as a problem, it was recorded. loneliness was included because it has been found to be one of the most common and difficult outcomes on conjugal bereavement (lund, ). data analysis descriptive data included reporting means, standard deviations, and percentages of demographic, pet ownership, and outcome variables. in order to identify any potential relationship that could exist between categories of pet ownership and background and demographic variables, one-way analysis of variance (andv a) and chi-squares were performed where appropriate. this analysis identified any factors that would need to be controlled for in subsequent analyses. in order to address the research questions that examined the relationship between categories of pet ownership and perceived stress, perceived coping, and depression, andv as with repeated measures were employed. in these procedures, pet ownership status was the between-group factor, and change over time was treated as the within-subject factor. because of unequal cell sizes, tests for violations of assumptions of homogeneity of variance were conducted, and appropriate adjustments in the analyses were made. for all categories of pet owners, the question of the helpfulness of pets was content analyzed to look for themes in the data. in particular, responses related to why pets are or are not considered helpful by their owners were examined and noted. similarly, the percentages of bereaved in each of the categories of pet ownership who stated loneliness as their single greatest problem at each data point were calculated and graphed. even though no statistical tests were employed for this variable because of the nature of its measurement, loneliness was examined for trends in the data over time. consistent pet owners was the only group used to determine types of pet ownership. dog owners, cat owners, and multiple pet owners were distinguished from this category. because of the small size of this sub sample , andv a with repeated measures could not be employed; rather one-way andv as were conducted. also wilcoxon tests were performed to detect differences in means over time. the percentages of bereaved in each of the types of pet categories who stated loneliness as their single greatest problem at each data point were calculated, even though no statistical tests were employed. chapreriv results in order to be better able to interpret the findings of this study, a brief demographic description of this sample is provided in table . as table demonstrates, most respondents were consistent nonpet owners ( . % ), and the sample was predominantly female ( %)-with a mean age equal to . years (sd = . ). one hundred forty-nine ( . %) graduated from high school, and ( . %) graduated from college. the respondents had been married an average of . years (sd = . ). the least amount of time married was months, whereas the most years married was years. in order to rule out any confounding effects between pet ownership and demographic factors, one-way anov as were performed on age, socioeconomic status, employment, marriage, and education. according to the data in table , the pet category means for employment and age were significantly different at the < . level. the tukey pairwise test revealed that the true nature of the differences for age lies between consistent pet owners and consistent nonpet owners. the consistent pet owners' mean age ( . ) was significantly lower than the mean age of consistent nonowners ( . ). the tukey pairwise test revealed that the differences for employment are between no longer pet owners and never table sample characteristics (n = ) characteristic pet ownership categories consistent pet owners consistent nonpet owners new owners no longer pet owners sporadic pet owners sex male female age- to to or older education nonhigh school graduate high school graduate some college college graduate additional graduate work years marriedb months to years years to years years to years years and longer -range = to , m = . , sd = . . brange = months to years, m = . , sd = . . percent . . . . . . . . . . . . . . . . . . . table baseline mean scores for socioeconomic status, education, employment age, and years married according to pet ownership categories means pet ownership categories socioeconomic education employment age years married status status consistent . . . . . owners consistent . . . . . nonowners new owners . . . . . no longer . . . . . owners sporadic . . . . . owners f ratio . . . * . * . *ll < . . pet owners. the consistent nonpet owners were less likely to be employed, whereas no longer owners were more likely to work at least part time. no other significant difference was found between the pet ownership categories for any of the remaining background variables. because of the results of the anov as for age and employment, it was important to determine if these variables were related to the outcomes in this study. therefore, pearson product-moment correlations were generated between age and employment status and stress, coping, and depression at each time point (see table ). two significant correlations were found at time in which age was related to table correlations of age and employment with stress, coping, and depression over six time points stress time time time time time time coping time time time time time time depression time time time time time time *p < . . age employment . -. -. -. -. -. -. * . -. -. -. -. . -. . -. -. . . * -. . . . . -. -. -. -. . . . -. -. . . -. stress <n < . ) and coping <n < . ). these were the only two correlations that attained statistical significance. because their magnitudes were not substantial, they were more likely random occurrences. given this instance, as well as no other significant associations were found between the outcomes and age and employment status, it was deemed unnecessary to control for these variables in subsequent multivariate analyses. patterns of pet ownership and bereavement outcomes anov a with repeated measures were employed in order to address the first research question of this study. separate analyses were conducted for stress, coping, and depression. means and standard deviations over the six time points are presented in tables , , and , respectively. it should be noted, however, that it was necessary to drop the sporadic pet owners from these analyses, given the extremely small cell size for this group (n = ). the results of the repeated measures analyses revealed no statistically significant group (pet ownership category), change over time, or group-by-time interaction effects because of pet ownership for stress, coping, or depression. over the course of years, patterns of pet ownership did not appear to have an impact on bereavement outcomes when categorized as they were in this study. each group demonstrated similarly moderate stress levels, moderate to high coping ability, and generally minimal depression throughout the years independent of what category the bereaved were in. even though evidence was found that there table stress levels over two years of bereavement broken down according to categories of pet ownership to weeks months months year months m sd m sd m sd m sd m sd consistent owners . . . . . . . . . . consistent nonowners . . . . . . . . . . new owners . . . . . . . . . . no longer owners . . . . . . . . . . total sample . . . . . . . . . . pet category status: e = . ns. change over time: e = . ns. pet category by time: e = . ns. note. sporadic pet owners were not included in this analysis because of small group size. years m sd . . . . . . . . . . vol '\ table coping levels over two years of bereavement broken down according to categories of pet ownership to weeks months months year months m sd m sd m sd m sd m sd consistent owners . . . . . . . . . . consistent nonowners . . . . . . . . . . new owners . . . . . . . . . . no longer owners . . . . . . . . . . total sample . . . . . . . . . . pet category status: e = . ns. change over time: e = . ns. pet category by time: e = . £. note. sporadic pet owners were not included in this analysis because of small group size. years m sd . . . . . . . . . . w ....j table depression levels over two years of bereavement broken down according to categories of pet ownership to weeks months months year months m sd m sd m sd m sd m sd consistent owners . . . . . . . . . . consistent nonowners . . . . . . . . . . new owners . . . . . . . . . . no longer owners . . . . . . . . . . total sample . . . . . . . . . . pet category status: e = . ns. change over time: e = . ns. pet category by time: e = . ns. note. sporadic pet owners were not included in this analysis because of small group size. years m sd . . . . . . . . . . w was some overall change over time, particularly with respect to stress and depression, the change was not significant enough to be detected by the analyses. this finding, however, is more likely a feature of the natural course of bereavement. responses to the open-ended question, "what has been the single greatest problem for you related to the death of your spouse?" were content analyzed for each pet category. loneliness was the most often-cited response. throughout the study, loneliness was mentioned by a minimum of % of the respondents (at time ) to a maximum of % (at time ). the lowest percentage of respondents from within a specific pet ownership category who reported loneliness as a problem was at time in which of the consistent nonpet owners ( . %) reported. ten of new pet owners comprised the highest percentage of loneliness reported by this group. a graph of the percentages within each pet category, who mentioned loneliness at each time period, is presented in the figure. the smallest differences were found at time in which the percentages ranged from % to % . eighteen of consistent pet owners ( %) cited loneliness as their response at time . new pet owners had consistently higher percentages of loneliness through the last year of the study. when loneliness responses were averaged across all time points for all groups, consistent pet owners ( %) and consistent nonpet owners ( %) reported the lowest average percentages. the average for new owners ( . %) and no longer owners ( . %) over time were higher than responses from the other two groups. all groups ~--~------------------------~----------------·------ ~--~--------------- -----------~-_ -----~------------- ~--------------------------------+--------------~·----- ~------------------------·----~------------~-------- +-' c ~ ~-------------·---------~-------+--~--~-------+=-~~--~ l- a> a.. ~--------~--r---·------------------------------------- ~----- ~--------------------------------------------------- legend consistent owners had pets t consistent nonowners ::: never new owners had a pet after t no longer owners o~----------------·--~~-------~--------~---~----,-------~ - weeks months months year months years percentage of loneliness reported for categories of pet ownership across six time points showed gradual reductions in loneliness by the -year endpoint of the study in which % still reported loneliness as a problem. other less often-cited responses to this question included financial difficulties, acceptance of spouse's death, decision making, and legal matters. these responses, however, were distributed fairly evenly among each of the pet ownership categories. types of pets the second question examined the differences in type of pet ownership such as dog and cat for the outcome variables perceived stress, perceived coping, depression, and loneliness. in order to keep the analysis more straightforward, only those who were consistent owners throughout the study period were selected; otherwise the analysis would have been overly complicated by the sporadic nature of the other categories. it is acknowledged that this was a limitation of the study, but the relationship between type of pet owned and bereavement outcomes would be easier to delineate if the consistency of pet ownership was controlled. because the majority owned a dog, a cat, or a mix of pets, the analyses were broken down into these categories. dog owners (n. = ) represented % of the pet owners, with cat owners (n. = ) and mixed pet owners (n. = ) each accounting for % of the consistent pet ownership subsample. bird owners (n. = ) made up the remaining % of the sample. the small size of the sub sample precluded repeated measures analysis. as an alternative, one-way anov as were conducted at each time point to detect among group differences in mean stress, coping, and depression levels. when significant between-group effects were detected, tukey tests were employed to uncover pairwise differences. wilcoxon tests were performed within each group to determine if the means had changed over time. the results of the analyses are presented in tables , , and . at time , dog owners had significantly higher stress levels ( . ) than mixed owners ( . ). dog owners significantly decreased their levels of stress over time particularly after the first months of bereavement. by years' postbereavement, dog owners' stress levels ( . ) were significantly lower than at months ( . ). no significant differences were found in coping between the different groups of pet owners. cat owners, however, showed an increase in perceived coping ability over the first months of bereavement, as indicated by the results of the wilcoxon pairwise test between time and time . no changes in coping were observed for dog owners or for those who owned dogs and cats together. the only between-group effect for depression was detected at months in which dog owners reported significantly higher depression scores than cat owners. even though dog owners appeared to have consistently higher depression scores at each time point, a significant increase was noted between year and months of bereavement. on the other hand, depression levels declined significantly for cat owners between to weeks and months of bereavement. it should be noted again, however, that the mean depression scores were minimal to mild throughout the study. table differences in stress levels over two years between dog, cat, or mixed species' owners to weeks* months months year m sd m sd m sd m sd dog owners . a . . . . b . . . cat owners . . . . . . . . mixed owners . - . . . . . . . *e = . , n < . . a, bpairs significantly different, n < . . months m sd . . . . . . years m sd . b . . . . . ~ w table differences in coping levels over two years between dog, cat, or mixed species' owners to weeks* m sd dog owners . . cat owners . a . mixed owners . . note. no significant between-group differences. apairs significantly different, < . . months m sd . . . . . . months year m sd m sd . . . . . a . . . . . . . months years m sd m sd . . . . . . . . . . . . t table differences in depression levels over two years between dog, cat, or mixed species' owners to weeks* months months year m sl} m sd m sd m sd dog owners . . . . . . . b . cat owners . c . . . . a . . . mixed owners . . . . . . . . e = . , < . . a,b,cpairs significantly different, < . . months m sl} . a,b . . a,c . . . years m sd . . . . . . .a::. ul regarding differences in type of pet ownership and loneliness, % of the dog owners (n = ) mentioned loneliness when averaged across years of bereavement. loneliness was mentioned by % of the cat owners (n = ) and % of the mixed pet owners when averaged across all six time points. for dog, cat, and mixed owners alike, loneliness was mentioned the most frequently at months of bereavement. loneliness was reported at time by % of dog owners, % of cat owners, and % of mixed owners. how helpful are pets? the final research question examined the responses of bereaved pet owners regarding the helpfulness of their pets. as mentioned earlier, this question was asked only at months and years of bereavement. however, the responses of anyone who owned a pet at these time points were recorded. sixty-three responses from consistent and intermittent pet owners were recorded. eighteen pet owners did not respond to the question. in response to this question, the majority of all pet owners responded favorably. negative replies were reported by owners. this question was only asked at time and time , and the responses may have been mentioned by the same person more than once. table summarizes the three most common types of responses and lists some examples. of the negative responses, owners reported that the pet belonged to their spouse. one displeased owner reported that the pet was not wanted; it was given as a christmas present. more than one half of the favorable responses indicated that pets were helpful because of the companionship they table sample responses of bereaved pet owners to the question: "have your pets been helpful to you?" companionship (mentioned times) she helps me, my older dog is company. oh yes, i cannot live without them, they are company. she is company. a very good companion. he's a lot of company. a very dear friend and companion. yes, good companionship. a great companion. keeps me company. protection (mentioned times) i don't want to live without a dog, i feel safe. she is a protector. yes, protection. very much, i feel safe. i don't feel afraid. pet interaction-talk. hug (mentioned times) i talk to my dog and hug my dog. yes, i talk to her. yes, i talk to him and call him my buddy. i talk to him, he understands when i feel bad. he seems to know how i feel. negative responses (mentioned times) no, dog grieved for master and died months after him. no! no, they were my husband's, they are a nuisance. no, just a nuisance in away, it was a christmas gift. provided, protection, something to talk to and care for, and empathy and understanding. chapter v discussion research examining the therapeutic benefits of pet ownership is limited, and research focusing on the effects of pet ownership on spousal bereavement is even more scant. this study was an attempt to address this lack of knowledge. a sample of bereaved adults + years old was grouped according to pet ownership into consistent owners and nonowners, new owners, no longer owners, and sporadic owners. they were interviewed six times during the -year duration of the study. instruments that measured perceived stress, perceived coping, depression, and loneliness were completed. owners also were asked to describe the helpfulness of their pets. the groups were compared on bereavement outcomes using statistical analyses that included anovas, pearson product- moment correlations, multivariate analysis of variances (manovas), and wilcoxon paired tests. discussion of results the objective of this thesis was to determine if bereaved spouses would benefit from pet ownership over years and if these benefits were dependent on categories of pet ownership. according to the findings of this study, pet ownership does not appear to affect bereavement outcomes over time. this finding is inconsistent with the lund et al. ( ) study. these researchers concluded that in early bereavement pet ownership had a slight negative effect on the mean coping levels of respondents. the lund et al. study, however, only measured year of bereavement. once the multivariate analysis encompassed a -year time span, however, the effect of pet ownership was no longer evident. recall that akiyama et al. ( ) found that pet ownership had a positive effect on the health status of recently bereaved widows, suggesting that pets playa role in lowering postbereavement morbidity. similarly, bolin ( ) found that the pet effect seems to alleviate the sense of despair that is common with grief and, therefore, should be left in the home of the grieving spouse. however, neither study examined these effects over years. therefore, it is still unclear as to the long-term benefits of pet ownership, although these studies reported some positive effects early in the process. consequently, one reason for the inconsistency between the findings of this study and the others could be methodological differences. three other explanations exist as to why no effects were detected in this study because of pet ownership. first, there may have been a loss of statistical power given the relatively small cell sizes of some pet categories. moreover, attrition or missing data further reduced the sample in some analyses, thus rendering the detection of even moderate effects more difficult. another explanation could be that almost all the bereaved in this sample reported an available confidant with whom they could express their thoughts and feelings (dimond et al., ). consequently, the impact of pet ownership on the outcomes studied may have been minimized further. as discussed in chapter ii, the stress of bereavement can be moderated by a social support system. a pet may only be helpful to bereaved spouses if human social support is minimal or unavailable. this finding was confirmed by garrity et al. ( ) who found that pet ownership and pet attachment was associated with less depression in bereaved elderly who lack a confidant. goldmeier ( ) also concluded that pets were helpful to the elderly only when human companionship was unavailable. finally, and perhaps more importantly, no data were available on the degree of attachment between the owner and the pet. the degree of attachment may be a more critical factor impacting bereavement outcomes than pet ownership itself. at the very least, attachment may moderate the relationship between pet ownership and bereavement outcomes. the relationship may not be detected without accounting for such moderating influences. conversely, beck and katcher ( ) found no differences among pet owners, former pet owners, and those never owning a pet on the prevalence of coronary heart disease. even though beck and katcher did not examine a bereaved population, similarities exist between their study and the present study. both studies examined the pet effects based on differences between pet categories on well-being. beck and katcher found that type a personalities were associated with an increased risk of heart disease, and this increase was not dependent on pet ownership categories. loneliness was mentioned as a problem by respondents in all pet categories. new pet owners reported the highest percentage of loneliness across all pet categories and time points. this finding indicates that seeking companionship of a new pet is an attempt to fill the void of loneliness. this finding also was somewhat consistent with a study by goldmeier ( ) who found pet ownership to be a significant factor in alleviating loneliness among older women who lived alone. in the present study, nonpet owners were less lonely at time than consistent pet owners, which may indicate personality differences between the groups. pet owners may have a greater need for companionship whether human or animal than nonpet owners. nonpet owners may be more resilient than pet owners or they may have other ways to alleviate loneliness. those owning pets may feel a greater sense of helplessness and may be more insecure and fearful. this would explain why pet owners cite protection and companionship as two of the primary reasons for owning a pet. another plausible explanation may be that if the pet was bonded to both spouses that the pet could serve as a constant reminder of the deceased. in order to examine potential differences between type of pet owned, consistent dog, cat, and mixed species' owners were compared. one-way anov as revealed that dog owners at time had significantly higher stress levels than mixed species owners. one explanation for this finding may be that the responsibilities of dog ownership are more demanding than caring for multiple pets, particularly if those pets are birds or cats. dogs require more walking, grooming, and feeding than cats or birds. another explanation may be that the comfort dogs, cats, birds, and fish provide is distinctive. perhaps multiple pet owners may derive cumulative stress-reducing benefits from the nurturing they receive from all pets. consistent pet ownership over years may suggest an attachment to a pet(s). attachment to pets and forming a relationship with these pets over time may be a way to buffer a grieving spouse. for multiple pet owners, each relationship may satisfy different needs for the surviving spouse. similarly, the need to care for many animals in times of crisis may be beneficial because it enables an individual to think of other things. finally, pet owners cite protection as one reason for having a pet, that is, physical as well as emotional safety. multiple pet ownership may psychologically protect spouses from the fear of losing more loved ones. furthermore, cat owners were significantly less depressed than dog owners at months of bereavement. it is unclear why differences exist between types of pet ownership and depression at this point in the bereavement process. nothing was found in the literature that would support these findings, and any attempts to explain these phenomena would be speculation. because between-group differences in depression were found only at this data point, it might be explained as a random occurrence. the within-group effects of type of pet ownership over time were compared to determine if changes were occurring for dog owners versus cat owners versus mixed owners. the results of these tests cannot be applied to other populations given the small cell sizes and nonparametric nature of the tests. dog owners reported high stress levels at time but improved significantly by the -year conclusion of the study. nothing significant was found in the stress levels of cat owners or mixed species' owners over time. cat owners made significant improvements in coping over time. no literature was found to support or deny these findings. it could be speculated that the differences may be because cats are less demanding and more independent than dog owners. even though dog owners temporarily increased in depression from year to months of bereavement, the depression levels of cat owners decreased significantly by that point. the findings pertaining to cat owners could suggest a buffering effect of pet ownership that is consistent with the work of siegel ( ). on the other hand, mean depression levels were minimal to mild in this sample. this finding may be one reason for the absence of more effects. dog owners initially reported higher stress levels, but these levels reduced significantly by the nd year of bereavement. this finding is somewhat consistent with siegel's ( ) study. siegel explored pet ownership and physician utilization in the elderly. siegel found that dog owners, in particular, were buffered from the impact of stressful life events on physician utilization. a qualitative difference was found in the relationship of dog owners than in owners of other pets not replicated in this study. the lago et al. ( ) survey of the elderly reported greater pet involvement if the pet was a dog rather than a cat. even though the multivariate analyses did not reveal significant relationships between pet ownership and bereavement-related stress, coping, and depression, some evidence was found that owning a pet was perceived as helpful among some bereaved spouses. fifty percent of bereaved pet owners mentioned that their pet provided them with companionship. other frequently cited responses included protection and safety, affection, and something to talk to and care for. siegel ( ) reported that companionship also was a benefit in three fourths of the respondents. this finding has been replicated in studies on the social contributions of companion animals and the elder! y. pets were reported as providing companionship and facilitating socialization with others (levinson, a, b; mugford, a, b; vogel et al., ). many of these studies have speculated that, for some, pets can alleviate problems associated with loneliness and could facilitate social interaction. similarly, bereaved pet owners in this study indicated that loneliness and the need for companionship were, in part, being met by their pets. limitations of the study a major limitation of this study was that it was not designed specifically for bereaved spouses who own pets. several important questions regarding the nature of the relationship between bereaved owners and their pets were not asked and could not be deduced from the data. for example, the data set could not delineate bonded pet owners from nonbonded pet owners. recent studies have found that the attachment between pet and owner is related to well-being rather than pet ownership status alone (lago et al., ; lawton et al., ). as discussed earlier, the results of this study would have been clarified if a pet attachment scale had been included in the original analysis. there was no way to determine from this data set who owned the pet-the deceased spouse or the survivor. this finding is a potentially important control variable that may have accounted for why pets did not significantly impact outcomes. some of the open-ended responses indicated that pets belonging to the depressed may have been a source of difficulty. another limitation is that the helpfulness of the pet was determined late in the bereavement process. it is not clear if the pets were always helpful to the bereaved or if their value was recognized later in bereavement. finally, the small nuitlber of respondents in several of the pet categories was problematic. in addition to the reduction of statistical power, non parametric tests were used in analysis by comparing changes over time among dog, cat, and mixed pet owners. this limits the generalizability of these findings, and they must be interpreted cautiously. recommendations for future research the limitation discussed above illustrates the need to examine the bond between people and their pets. it remains unclear if pets have a therapeutic effect in stressful situations and only if human companionship is unavailable. examining the pet ownership effect on bereaved spouses longitudinally was a strength in this study, but it could not represent a complete life-course perspective. wilson and netting ( ) encouraged future research to explore prior history with pets and previous attitudes toward pet attachments. the ability of an older adult to form a companion bond and to benefit from the attachment, especially during bereavement, may depend on previous associations with pets. these previous associations include pet history and attitudes formed from positive or negative experiences with pets at a younger age. exploring this aspect of pet ownership from a life-course perspective would require extensive longitudinal or retrospective studies of elderly pet owners. if this was done, it could explain why the results of past studies, as well as the present one, have been inconclusive. the examination of pet ownership over a lifetime would explain why pets are therapeutic in certain situations and which populations benefit most from owning a pet. conclusion conjugal bereavement typically is stressful and disrupts the life of the surviving spouse. the need to find preventive interventions aimed at reducing the disruptive effects is crucial. pet ownership has been studied as a preventive measure for grieving spouses. even though some previous research has uncovered benefits associated with pet ownership, this study was unable to support those findings. prescribing pets for bereaved spouses is not recommended for every individual. finances, living arrangements, housing situations, social support, and previous pet history are factors that could influence whether a grieving spouse will perceive a pet as therapeutic. more research, therefore, is needed that examines the situational and individual differences that occur over a lifetime that would make pet ownership a viable intervention. references akiyama, h., holtzman, j. m., & britz, w. e. 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( ). a self-rating depression scale. archives of general psychiatry, , - . wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ acceptability and perceived effectiveness of approaches to support biomedical doctoral student wellness: one size doesn’t fit all volume , accepting editor nicole a. buzzetto-hollywood │received: may , │ revised: july , september , october , october , │ accepted: november , . cite as: hish, a. j., nagy, g. a., fang, c. m., kelley, l., nicchitta, c. v., dzirasa, k. & rosenthal, m. z. ( ). acceptability and perceived effectiveness of approaches to support biomedical doctoral student well- ness: one size doesn’t fit all. international journal of doctoral studies, , - . https://doi.org/ . / (cc by-nc . ) this article is licensed to you under a creative commons attribution-noncommercial . international license. when you copy and redistribute this paper in full or in part, you need to provide proper attribution to it to ensure that others can later locate this work (and to ensure that others do not accuse you of plagiarism). you may (and we encour- age you to) adapt, remix, transform, and build upon the material for any non-commercial purposes. this license does not permit you to use this material for commercial purposes. acceptability and perceived effectiveness of approaches to support biomedical doctoral student wellness: one size doesn’t fit all alexander j. hish mount sinai hospital, new york, ny, usa alexander.hish@mountsinai.org gabriela a. nagy duke university, durham, nc, usa gabriela.nagy@duke.edu caitlin m. fang duke university, durham, nc, usa caitlin.fang@duke.edu lisalynn kelley duke university, durham, nc, usa lisalynn.kelley@duke.edu christopher v. nicchitta duke university, durham, nc, usa christopher.nicchitta@duke.edu kafui dzirasa duke university, durham, nc, usa kafui.dzirasa@duke.edu m. zachary rosenthal* duke university, durham, nc, usa mark.rosenthal@duke.edu * corresponding author abstract aim/purpose national and international survey studies have begun to identify heightened levels of depression, anxiety, and burnout among doctoral students. never- theless, little research has been done to evaluate which interventions may support doctoral student wellness. background to guide future interventions research, this study evaluated perceptions of the acceptability and effectiveness of wellness approaches among biomedical doctoral students. methodology in this study, biomedical doctoral students were sampled from a research institution in the southeastern united states. participants completed a struc- tured psychiatric diagnostic interview and self-report questionnaires. ques- tionnaires assessed participants’ beliefs about the acceptability and effective- ness of wellness approaches in reducing burnout symptoms and depres- sion symptoms, and the participants’ attitudes towards psychological services. contribution this study demonstrates that approaches to support biomedical doctoral stu- dent wellness should be tailored according to a student’s history of problems with mental health. https://doi.org/ . / https://creativecommons.org/licenses/by-nc/ . / https://creativecommons.org/licenses/by-nc/ . / one size doesn’t fit all findings among candidate approaches, those involving spending time socializing with friends and family were rated most favorably by the entire sample. however, participants with high burnout or depression symptoms negatively evaluated approaches involving social engagement. participants with high burnout symptoms or a history of psychological diagnoses or treatment rated individ- ual therapy more favorably. recommendations for practitioners social engagement is highly valued by biomedical doctoral students, above and beyond institution-based wellness resources. university administrators should prioritize interventions favored by students struggling with symptoms of burnout and mental health problems, especially individual therapy. recommendations for researchers randomized trials should be conducted to assess the effectiveness in reduc- ing problems with mental health of the approaches rated favorably, particu- larly those involving social engagement. studies should investigate facilitators and barriers to approaches rated highly likely to be effective, but not accepta- ble, including peer support groups and individual therapy. impact on society in the interest of preventing attrition from biomedical doctoral programs and promoting the wellness and success of future scientists, it is important to de- velop training programs sensitive to the mental health needs of their stu- dents. this study provides important insights guiding next steps in interven- tion testing and implementation to support biomedical doctoral students. future research future studies should validate the findings in this study with large interna- tionally representative samples of students across various fields of doctoral study. future intervention studies should include rigorous evaluation of facil- itators and barriers for approaches rated favorably in this study. keywords burnout, depression, doctoral students, intervention, wellness introduction in recent years, large national and international survey studies have begun to demonstrate evidence of heightened depression, anxiety, and burnout among doctoral students (e.g., evans et al., ; levec- que et al., ). contributing to these problems include doctoral students’ struggle to maintain work-life balance (fuhrmann et al., ) and significant financial pressures related to low compensa- tion and limitations in research funding (alberts et al., ; van der haert et al., ). doctoral students in the biomedical sciences constitute the largest fraction of graduate students in the sciences in the united states (national academy of sciences, national academy of engineering, & institute of medicine, ). despite the well-documented need to intervene to prevent burnout and improve wellness for this vulnerable population, little scientific work has been done to evaluate which inter- ventions may be effective (tsai & muindi, ). university program administrators are faced with the daunting task of choosing interventions that benefit the most students at the lowest cost to the institution. a necessary step in achieving this ob- jective involves selecting interventions, tailoring their implementation to particular contexts, and eval- uating their efficacy, acceptability, and feasibility (bartholomew et al., ; green et al., ; kane & trochim, ; powell et al., ; rouwette et al., ). to this end, the current study aims to increase knowledge in the areas of intervention acceptability and effectiveness among biomedical doctoral students. hish et al. literature review biom edical doctoral study program s an d m en tal h ealth the biomedical sciences are unique in that they deal with the principles that shape health and disease processes, seeking the means to prevent or cure illnesses that afflict millions of individuals and their loved ones on a daily basis. given the pressing nature of the problems it seeks to solve, this enter- prise attracts substantial funding from the national institutes of health (nih), alongside numerous federal agencies, academic institutions, and charitable foundations (alberts et al., ). nevertheless, as articulated close to a decade ago by the economist paula stephan ( ), the landscape for bio- medical phd training is under considerable economic pressure. the principle drivers of this growing crisis include continued instability in federal funding of research and the economic “supply and de- mand” demographic impact of an extended expansion in biomedical phd training without a com- mensurate increase in available faculty positions (stephan, ). compounding the challenge is the paucity of research track positions within academia, hyper-competition for research funding, and a phd training paradigm that has not evolved to meet these challenges (alberts et al., ; casadevall & fang, ). furthermore, the overall length of training for these students is often longer than sev- eral comparable scientific disciplines such as chemistry and physics, with an average time-to-phd of - years, and postdoctoral training that may last another - years (national institutes of health, ). in the face of protracted, demanding training programs, along with the uncertainty of career advancement due to an inadequate supply of tenure-track faculty positions and funding for biomedi- cal research (alberts et al., ; fuhrmann et al., ), it is unsurprising that biomedical doctoral students in particular may face an increased burden of mental illness. addressing these issues is an important area of concern for the future of the broader biomedical enterprise and its promise of un- derstanding and treating illness, as poor mental health in doctoral student samples has been associ- ated with reduced academic productivity, decreased quality of work, and attrition (hyun et al., ; levecque et al., ). little work has been done to examine the prevalence of various mental health problems among grad- uate students generally and biomedical doctoral students specifically (levecque et al., ; tsai & muindi, ). our research team found that, in a sample of biomedical doctoral students at one institution, % of students met diagnostic criteria for a mood disorder and % for an anxiety dis- order in the past year (nagy et al., ), compared to % and % in the general population, re- spectively (kessler et al., ). while we are not aware of studies in other doctoral disciplines using standardized interviews to ascertain the mental disorders of students, one study of phd students rep- resenting various disciplines from institutions (lipson et al., ) found, for example, the follow- ing prevalence rates of moderate-to-severe depressive symptoms as measured on the gold standard patient health questionnaire- (phq- ; kroenke et al., ): % in social sciences, % in hu- manities, % in natural sciences, and % in engineering. this same study (lipson et al., ) measured prevalence rates of moderate-to-severe anxiety using the generalized anxiety disorder- instrument (gad- ; spitzer et al., ), with the following results: % in social sciences, % in hu- manities, % in natural sciences, and % in engineering. given these data, biomedical doctoral stu- dents may experience clinically significant depression and anxiety at rates higher than the general population and exceeding or on par with those of students in other doctoral disciplines. burnout is a more difficult construct to measure. although the maslach burnout inventory (mbi; maslach & jackson, ) has been considered by some as the gold standard measure of burnout, other measures have proliferated over the years to target the particular experiences of burnout in spe- cific disciplines or circumstances, and there are not accepted symptom thresholds at which an indi- vidual is considered “burned out” (rotenstein et al., ). these characteristics make it difficult to meaningfully compare the prevalence and severity of burnout experienced by students in different doctoral disciplines. our work demonstrated a normal distribution of overall burnout and subscale one size doesn’t fit all scores (i.e., inadequacy, exhaustion, cynicism) of biomedical doctoral students as measured by a mod- ified version of the school burnout inventory (sbi; salmela-aro et al., ), which may indicate that the majority of students are reporting moderate levels of burnout (nagy et al., ). the sbi has been mainly applied to examine the burnout experiences of high school and college students (e.g., evers et al., ; lee & anderman, ). however, one study (may et al., ) using the sbi to measure burnout in medical students found a mean sbi score of . (sd = . ), compared to a mean of . (sd = . ) among doctoral students in our earlier study (nagy et al., ). in fur- ther comparison, one study of psychology graduate students (richardson et al., ) found that burnout scores as measured by the copenhagen burnout inventory (cbi; kristensen et al., ) were above the mean of a normative sample. another study of a mixed sample of students in mas- ter’s and doctoral programs of diverse disciplines (allen et al., ) found that students had moder- ate scores (mean of . / , standard deviation of . ) on the exhaustion subscale of the mbi. again, while it is difficult to compare these samples due to the diversity of methods used to measure burn- out, it seems reasonable to suggest that biomedical doctoral students, similar to other graduate and professional students, experience significant levels of burnout. acceptability an d effectiven ess acceptability is the interest in and willingness of subjects to engage in particular activities, measured directly through self-report or inferred through the levels at which individuals actually participate in an intervention (berry et al., ; sekhon et al., ). various elements have been identified that contribute positively to the acceptability of an intervention. for example, the ease of use of the deliv- ery format contributes positively to acceptability (poole et al., ), as well as to what extent safety and privacy are protected during the intervention (gleeson et al., ). similarly, the fit of the inter- vention to an individual’s personal interests is positively associated with acceptability (beattie et al., ). conversely, one aspect that tends to decrease acceptability is the severity of a particular indi- vidual’s psychological symptoms; for example, if a subject’s depressive symptoms decrease their mo- tivation to engage in help-seeking behaviors generally, these symptoms may also reduce the subject’s willingness to engage in the intervention of interest (todd et al., ). another barrier to acceptabil- ity particularly relevant to mental health interventions is stigma associated with the intervention (clement et al., ). stigma about mental health and wellness services is modifiable, for example, through direct conversation with mental health professionals that addresses negative attitudes and fears (Ægisdóttir et al., ) or through reflection on personal values that may be consistent with help-seeking (lannin et al., ). although knowledge of the relative acceptability of mental health interventions would be useful in choosing interventions that the majority of students are likely to benefit from, this remains a significant gap in the biomedical doctoral student literature. effectiveness refers to the degree to which a given intervention accomplishes its targeted outcome (hanisch et al., ). for example, the effectiveness of an intervention designed to reduce burnout could be measured by a change in pre- to post-intervention self-report of the symptoms of burnout, including emotional exhaustion, depersonalization, and lack of personal accomplishment (iancu et al., ). although implementation of mental health interventions should be guided by their effective- ness, there is a dearth of empirical research investigating the comparative effectiveness of wellness interventions among biomedical doctoral students. an important first step in considering which in- terventions may be most effective, and for whom, is to examine the perceived effectiveness of a range of approaches. previously t ested in terven tion s although few studies have explored the acceptability and effectiveness of wellness interventions for biomedical doctoral students, studies of this nature among other categories of doctoral students have been conducted. among these, individual psychotherapy has been offered and utilized at many insti- tutions (prince, ; xiao et al., ). however, despite high rates of mental health problems in hish et al. biomedical graduate samples, traditional in-person mental health services are under-utilized by this population as indicated by our prior research finding that only % of these students with a past year psychological diagnosis utilized such services (nagy et al., ). this may be due, in part, to com- mon barriers to mental health treatment, such as time, finances, and stigma (eisenberg et al., ; gallagher, ). leveraging technology to disseminate effective, brief interventions at low-cost to students may help circumvent some treatment barriers. in general, inclusion of mobile technology (e.g., smartphone apps to administer frequent symptom assessments; text messaging with a therapist between sessions) supported by some clinician contact has been associated with positive treatment outcomes in psycho- therapy, with some studies even showing superior outcomes relative to traditional therapy without mobile technology (lindhiem et al., ). in addition, technology-delivered interventions for severe mental health problems can reach a wider subset of the general population as they may reduce the stigma associated with in-person mental health services (portnoy et al., ). online and mobile in- terventions are often well-accepted by participants once they have been initiated (berry et al., ), and may be more acceptable to hard-to-reach populations such as those with less social support and those of lower income levels (short et al., ). with regard to student populations, a recent meta- analysis of technology-delivered interventions (e.g., interventions delivered by computer or smartphone) among higher-education students (i.e., undergraduate, graduate, and professional stu- dents) showed that such strategies were effective at reducing depression, anxiety, and stress (conley et al., ). furthermore, attrition rates were low across interventions ( - %), indicating their promising ability to maintain participants from student populations (conley et al., ). there may be more specific factors affecting whether technology-delivered mental health interventions are ac- cepted by individuals. for example, the specific delivery format may have an influence on acceptabil- ity, as a review of technology-delivered interventions found higher acceptability of mobile phone-de- livered interventions relative to online interventions (berry et al., ). in summary, this is a bud- ding field; further studies are necessary to identify characteristics of technology-based interventions that optimize their acceptability and effectiveness, and more germane to the population of interest, further studies are required to identify acceptable technology-based interventions for doctoral stu- dents. in lieu of traditional psychotherapy, mindfulness approaches to well-being have entered the collective consciousness in recent years. mindfulness practices may take many forms, including meditation, yoga, journaling, making art, or listening to music (creswell, ). mindfulness meditation in partic- ular has been the subject of extensive study, with large meta-analyses finding significant reductions in symptoms including anxiety (bamber & morpeth, ) and depression (halladay et al., ) in col- lege students, though other meta-analyses have shown mixed results (breedvelt et al., ; dawson et al., ). when looking at studies of graduate and professional students, the medical student liter- ature is most robust and also demonstrates mixed evidence for the efficacy of mindfulness interven- tions in reducing problems with mental health (daya & hearn, ). unfortunately, few random- ized controlled trials have tested mindfulness interventions to improve wellness in doctoral students, though one of these trials found that a daily, guided mindfulness practice significantly reduced de- pression and improved measures of positive coping after weeks (barry et al., ). we are not aware of any studies testing these interventions among biomedical doctoral students. creating more structured opportunities for students to engage with their peers and develop a strong support system in their training program may be a way for students to manage stress and prevent burnout before developing severe symptoms, thereby reducing the need for resource-heavy conven- tional interventions such as psychotherapy and psychotropic medications (ziegelstein, ). one example drawn from medical training involves creating small groups of students and faculty to de- brief in an informal setting periodically (hernandez, ; hernandez et al., ). such a setting provides the opportunity to converse with trusted peers and faculty on a regular basis, allowing stu- dents to be vulnerable, to establish meaningful connections with each other and with mentors, and to one size doesn’t fit all discuss emotionally distressing experiences. similarly, in a qualitative study of doctoral student expe- riences, emotional and professional support from friends within a student’s degree program were considered important factors leading to successful degree completion (jairam & kahl, ). nota- bly, fellow students were considered well-suited to provide empathy and encouragement, partly be- cause of their ability to provide unique perspectives on shared challenges and their ability to act as sounding boards to vent frustrations (jairam & kahl, ). these findings indicate that doctoral stu- dents would respond positively to interventions involving increased peer support, and these preven- tative interventions could potentially yield large reductions in student psychological distress at low cost. however, no studies we know of have tested the impact of such interventions on biomedical doctoral student wellness. another approach to prevention of mental health problems involves altering the curricular structure of a study program to address the underlying stressors predisposing students to these problems. lit- tle scientific work has been done to study curricular interventions addressing mental health among doctoral students. common themes among the interventions tested thus far include enforcing a more structured study program (hovdhaugen, ; viđak et al., ), and enhancing the quality of com- munication with student advisors (cornér et al., ; geven et al., ; tompkins et al., ). in contrast, structural reform to reduce or prevent mental health issues has been extensively studied among medical trainees and physicians; this work can be drawn on to guide similar studies among doctoral students. taken as a whole, this body of evidence supports organizational-level changes (e.g., duty hour limitations) as being more effective than individual-level changes (e.g., mindfulness training; busireddy et al., ; daya and hearn, ; panagioti et al., ; wasson et al., ; west et al., ; williams et al., ). study aim s a foundational step toward the development, dissemination, and implementation of strategies to im- prove doctoral student wellness is the identification of acceptable and effective interventions. the present study reports on findings from a sample of biomedical doctoral students at a university in the southeastern united states regarding their perceptions of the acceptability and effectiveness of vari- ous wellness resources, services, and practices. specifically, the aims of the present study were to ex- amine (a) perceptions of acceptability and effectiveness of candidate wellness approaches; (b) the in- fluence of burnout and problems with mental health (lifetime and current) on perceptions of well- ness approaches; and (c) the influence of stigma regarding psychological services on perceptions of wellness approaches. methods this study involved a survey- and interview-based correlational research design that utilized quantita- tive data to explore perceptions of wellness approaches among biomedical doctoral students and to determine if a relationship existed between problems with mental health and stigma regarding mental health care, and perceptions of these wellness approaches. the study represents a secondary analysis of data acquired in the context of a larger study on biomedical doctoral student mental health (see nagy et al., ). we were granted approval from our institution’s institutional review board (irb; protocol - ) to conduct this study. participan ts and r ecruitm en t study participants were biomedical doctoral students at a large research institution in the southeast- ern united states (n = ). the only inclusion criterion was that participants be biomedical doctoral students currently engaged in training within a department in our institution’s school of medicine. participants were recruited through brochures and flyers, website postings, emails sent to doctoral students, and in-person presentations at group meetings. all students in our institution’s biological hish et al. and biomedical sciences doctoral programs (n = ) were allowed to participate in our study; there- fore, our sample comprises . % of the total eligible students at our institution. study protocol during the study visit, participants were presented with an irb-approved informed consent. the in- formed consent packet covered details relating to the purpose of the study, the components of the study visit, an invitation to participate in future studies, risks (e.g., experiencing unpleasant thoughts and emotions) and benefits (e.g., the collective benefit of improving knowledge of student mental health problems at our institution and how to address them) of participating in the study, limits to confidentiality, the process to withdraw from the study (no participants chose to withdraw), and monetary compensation for participation ($ ). all participants were informed that should they start experiencing strong feelings of upset and/or suicidal thoughts during the study visit, a trained professional would be available to speak with them, and if they were at imminent risk of suicide, they would be taken to the nearest hospital emergency department; no participants met either of these conditions through the entire duration of the study. the study visit, which lasted an average of hours, consisted of self-report questionnaires administered through use of an online survey tool (qualtrics, ) on a computer in our laboratory, along with an in-person diagnostic interview. while participants completed the online self-report questionnaires in our laboratory, study personnel were present to answer participant questions. during instances when participants were unable to complete the entire study visit in one session, they were scheduled for a second session. all paper as- sessment data and research consent forms were kept in a secure locked cabinet in our laboratory ac- cessible only to approved study team members. all qualtrics survey data was de-identified and stored electronically on a secure server only accessible to approved study team members. in terviews structured clinical interviews (i.e., diagnostic interviews) were conducted by reliably trained assessors, including four doctoral students in clinical psychology, one postdoctoral trainee in clinical psychol- ogy, and one licensed clinical social worker. the general training protocol to become proficient in conducting these structured clinical interviews comprised several stages. first, assessors met to dis- cuss the assessment in general, the flow of the assessment based on study criteria, and the different modules. second, assessors observed (i.e., either live or via a recording) a structured clinical interview conducted by a reliably trained assessor, concurrently rated responses, and afterward compared their ratings and discussed discrepancies. third, assessors were observed conducting the structured clinical interview by the reliably trained assessor. the reliably trained assessor concurrently rated responses and discussed discrepancies in ratings afterward. this process was repeated until there was complete agreement in diagnoses assigned. contingent on aligned agreement in coding and confidence level of assessor in training, the assessor was deemed to be sufficiently reliably conducting this structured in- terview. to detect the presence of current or lifetime clinical diagnoses (not including personality disorders), we utilized the structured clinical interview for dsm- , research version (scid- -rv; first et al., ). the scid- -rv assesses the presence of mood disorders, psychotic disorders, substance use disorders, anxiety disorders, obsessive-compulsive and related disorders, sleep disorders, feeding and eating disorders, somatic symptom and related disorders, externalizing disorders, and trauma- and stressor-related disorders. to obtain information about psychiatric treatment history, we utilized the treatment history inter- view-modified (thi-m; linehan & heard, ). the thi-m assesses participants’ history of psy- chiatric treatment, prior hospitalizations, and medication history. the thi-m was administered by reliably trained assessors after the scid- -rv. one size doesn’t fit all m easures table presents a summary of the survey measures used in this study, including previously reported psychometric properties, original study population, and internal consistency in the present study. these survey measures were included in the portion of the study protocol involving self-report ques- tionnaires administered through an online survey tool. for each measure we provide examples of items found on the measure; for the complete measure, please refer to the cited literature. table . description of measures measure construct items scale original study ac- ceptable psychometric properties original study population present study inter- nal con- sistency sbia burnout - internal consistency, structural validity, convergent validitya secondary high school and voca- tional school stu- dents (n = ) α = . phq- b depres- sion symp- toms - internal consistency, construct validity, cri- terion validityb primary care and obstetrics-gyne- cology clinic pa- tients (n = , ) α = . bapsc beliefs about psy- chological services - internal consistency, test-retest reliability, construct validity, convergent validityc undergraduate students (n = ) α = . note. criterion validity assesses how well the measure correlates with or predicts scores on previously validated measures. structural, construct, and convergent validity assess the degree to which the survey measures what it claims to. test-retest reliability refers to the agreement between successive administrations of the same meas- ure. internal consistency refers to how closely related the items are in a measure, and is measured by the value cronbach’s α. asalmela-aro et al., (original measure was modified in the following manner: replaced “schoolwork” with “graduate program” on every item); bkroenke et al., ; cÆgisdóttir & gerstein, . key. sbi = school burnout inventory, phq- = patient health questionnaire- , baps = beliefs about psy- chological services to quantify burnout symptoms, we utilized a modified version of the school burnout inventory (sbi; salmela-aro et al., ). the sbi utilized herein is a -item self-report measure that assesses clinically relevant indices of burnout in the context of one’s graduate program, including exhaustion due to graduate work, cynicism toward the meaning of graduate school, and sense of inadequacy at graduate school. items are rated on a (completely disagree) to (completely agree) scale, and higher scores indicate greater burnout symptoms. example items include “i feel overwhelmed by my gradu- ate program” and “i often have feelings of inadequacy in my graduate program”. to assess the presence and severity of depression symptoms, we utilized the patient health ques- tionnaire- (phq- ; kroenke et al., ). the phq- is a -item self-report measure, with partici- pants rating the frequency at which they experience symptoms of major depression (e.g., loss of in- terest, depressed mood, sleeplessness, lack of energy). items are rated on a (not at all) to (nearly every day) scale, and higher scores indicate greater and more frequent symptoms of depression. ex- ample items include “little interest or pleasure in doing things?” and “feeling down, depressed, or hopeless?”. hish et al. to assess attitudes and beliefs about seeking psychological services, we utilized the beliefs about psychological services scale (baps; Ægisdóttir & gerstein, ). the baps is an -item self-re- port measure, with participants rating statements such as “i would be willing to confide my intimate concerns to a psychologist” and “i would feel uneasy going to a psychologist because of what some people might think”. items are rated on a (strongly disagree) to (strongly agree) scale, and higher scores reflect more favorable attitudes toward mental health treatment and greater willingness to seek help (negatively-worded items are reverse-scored). acceptability an d effectiven ess of can didate wellness approach es we developed a list of potential wellness resources and services that an institution could offer for biomedical doctoral students (i.e., “wellness approaches”). to identify these candidate approaches, we ( ) reviewed the literature, which revealed few interventions that had been specifically tested among biomedical doctoral students, and ( ) decided, based on input from our team of interdiscipli- nary investigators, to include a wide range of approaches, both conventional and unconventional. for each of these items, we asked participants to rate how likely they would be to use each strategy (i.e., “acceptability”) on a (not at all likely) to (extremely likely) scale. we also asked them to rate how effective they thought these strategies would be in reducing problems with mental and emotional health (i.e., “effectiveness”) on a (not at all effective) to (extremely effective) scale. wellness ap- proaches were separated into four categories based on which entity was responsible for implementing the approach: the individual (i.e., “self”), the individual’s support system (i.e., “friends & family”), the individual’s study program and associated advisors and administrators (i.e., “lab, department, & program”), or the individual’s institution (i.e., “institution”). these questions were also included in the portion of the study protocol involving self-report questionnaires administered through an online survey tool. the specific wording of the survey prompt was as follows: “the following table lists a number of things people can do to manage problems with mental/emotional health (e.g., stress, anxiety, depres- sion, burnout, frustration). the left column lists strategies (activities, services, techniques) people could use to manage problems with mental/emotional health. in the center column, please rate, in general, how likely you would be to use each strategy to manage problems with mental/emotional health on a to scale, with being not at all likely and being extremely likely. in the right col- umn, please rate, in general, how effective you think these strategies would be in reducing any prob- lems with mental/emotional health you might have on a to scale, with being not at all effec- tive and being extremely effective.” statistical m eth ods acceptability and effectiveness ratings were not normally distributed. accordingly, non-parametric tests were used in analyses. analyses included one-sample wilcoxon signed rank tests, bivariate cor- relations, and mann-whitney u tests. statistical analysis was conducted using the statistical package for social sciences (spss; ibm corp, ). results table provides a description of demographic information of participants. study findings are pre- sented in three categories, with key findings listed below: . acceptability and effectiveness of candidate wellness approaches a. candidate approaches involving spending time socializing with friends and family were rated most favorably by the entire sample. b. specifically, approaches rated both highly likely to be acceptable and effective in- cluded exercise, listening to/playing music, talking to parents, talking to friends who one size doesn’t fit all are far away, spending more time with friends in the area, watching movies with friends, socializing with colleagues during lab functions, and massage. c. approaches that were rated highly likely to be effective, but not acceptable, included peer support groups, group exercise/yoga/mindfulness classes, individual therapy, and therapy dogs. . acceptability and effectiveness of candidate wellness approaches among students with mental health problems a. participants with high burnout or depression symptoms negatively evaluated ap- proaches involving social engagement. b. participants with high burnout symptoms or a history of psychological diagnoses or treatment rated individual therapy more favorably. . acceptability and effectiveness of candidate wellness approaches based on beliefs about psychological services a. participants with favorable perceptions of psychological services rated therapy- based approaches more positively. table . sociodemographic characteristics of biomedical doctoral student participants (n= ) n (%) m (sd) range age . ( . ) - sex: female ( . %) race white/caucasian asian black/african american other middle eastern/arab native american/american indian ( . %) ( . %) ( . %) ( . %) ( . %) ( . %) ethnicity: hispanic ( . %) nativity: born in usa ( . %) family of origin income $ - $ , $ , - $ , $ , - $ , $ , - $ , $ , - $ , > $ , ( . %) ( . %) ( . %) ( %) ( %) ( . %) hish et al. n (%) m (sd) range income covers expenses: yes ( . %) marital status never married; in relationship never married; not in relationship married separated divorced ( . %) ( . %) ( . %) ( . %) ( . %) number of children . ( . ) - note. to protect the confidentiality of research participants and reduce the likelihood of individual participants being identified, we do not report on the academic program in which participants were enrolled nor the aca- demic year that they are completing at the time of the study. acceptability an d effectiven ess of can didate wellness approach es table outlines results regarding perceived acceptability and effectiveness of candidate wellness ap- proaches among the entire sample. we employed one-sample wilcoxon signed rank tests, which test whether the median of a distribution is significantly different from a hypothesized value. we utilized a hypothesized value of , as this is the intermediate value on the - scale, and allowed us to assess whether the intervention was commonly rated as “highly likely” (i.e., greater than ) to be acceptable and/or effective. the following approaches were rated both highly likely to be acceptable and highly likely to be effective among all participants: ( ) in the “self” category, exercise (p < . ) and listen- ing to/playing music (p < . ); ( ) in the “friends & family” category, talking to parents (p < . ), talking to friends who are far away (p < . ), spending more time with friends in the area (p < . ), and watching movies with friends (p < . ); ( ) in the “lab, department, & program” category, so- cializing with colleagues during lab functions (p < . ); and ( ) in the “institution” category, being offered massage services (p < . ; see table for details). the following approaches were rated highly likely to be effective, with a moderate-to-low likelihood of acceptability: ( ) in the “lab, de- partment, & program” category, peer support groups and ( ) in the “institution” category, group ex- ercise classes, group yoga class, group mindfulness practices, individual therapy (outside our institu- tion), individual therapy (within our institution), and playing with therapy dogs. for these interven- tions, the findings suggest that students believe these approaches would be very effective but per- ceive barriers to the acceptability of these approaches (see table for details). table . acceptability and effectiveness of wellness approaches wilcoxon signed rank test mean (sd) % ci of mean me- dian self exercise a <. . ( . ) . – . *** e <. . ( . ) . – . *** one size doesn’t fit all wilcoxon signed rank test mean (sd) % ci of mean me- dian meditation a . . ( . ) . – . ** e . . ( . ) . – . getting a massage a . . ( . ) . – . ** e . . ( . ) . – . reading self-help books a <. . ( . ) . – . *** e . . ( . ) . – . ** posting to/ receiving advice on anonymous message boards a <. . ( . ) . – . *** e <. . ( . ) . – . *** attending religious services a <. . ( . ) . – . *** e <. . ( . ) . – . *** private spiritual practice a <. . ( . ) . – . *** e <. . ( . ) . – . *** using a mobile phone app to manage emotions a <. . ( . ) . – . *** e <. . ( . ) . – . *** using a mobile phone app to manage weight a . . ( . ) . – . ** e . . ( . ) . – . ** listening to/ playing music a <. . ( . ) . – . *** e <. . ( . ) . – . *** making art a . . ( . ) . – . ** e . . ( . ) . – . writing in a journal a <. . ( . ) . – . *** e . . ( . ) . – . watching movies by your- self a <. . ( . ) . – . *** e . . ( . ) . – . friends & family talking to your parents a . . ( . ) . – . ** e <. . ( . ) . – . *** hish et al. wilcoxon signed rank test mean (sd) % ci of mean me- dian talking to friends who are far away a <. . ( . ) . – . *** e <. . ( . ) . – . *** spending more time with friends in the area a <. . ( . ) . – . *** e <. . ( . ) . – . *** watching movies with friends a . . ( . ) . – . ** e . . ( . ) . – . ** lab, department, & pro- gram talking to your mentor a . . ( . ) . – . e . . ( . ) . – . peer support groups a . . ( . ) . – . ** e <. . ( . ) . – . *** socializing with colleagues during lab functions a <. . ( . ) . – . *** e . . ( . ) . – . ** attending department events a <. . ( . ) . – . *** e . . ( . ) . – . institution group exercise classes a . . ( . ) . – . e <. . ( . ) . – . *** group yoga class a . . ( . ) . – . e . . ( . ) . – . ** group mindfulness prac- tices a <. . ( . ) . – . *** e . . ( . ) . – . * other group meditation a <. . ( . ) . – . *** e . . ( . ) . – . massage a . . ( . ) . – . * e . . ( . ) . – . ** one size doesn’t fit all wilcoxon signed rank test mean (sd) % ci of mean me- dian acupuncture a <. . ( . ) . – . *** e . . ( . ) . – . ** religious groups focused on spiritual and emotional well- being a <. . ( . ) . – . *** e . . ( . ) . – . ** group therapy a <. . ( . ) . – . *** e . . ( . ) . – . individual therapy (outside our institution) a . . ( . ) . – . e <. . ( . ) . – . *** individual therapy (within our institution) a . . ( . ) . – . e . . ( . ) . – . ** attending a skills training led by an expert a . . ( . ) . – . * e . . ( . ) . – . using an app to manage mood that includes peer support from another gradu- ate student a <. . ( . ) . – . *** e <. . ( . ) . – . *** attending a workshop on emotional well-being with other graduate students a <. . ( . ) . – . *** e . . ( . ) . – . * playing with therapy dogs a . . ( . ) . – . e . . ( . ) . – . ** full or half day event cele- brating mental well-being a . . ( . ) . – . e . . ( . ) . – . note. table presents results on acceptability and effectiveness of wellness approaches. results are presented as wilcoxon signed rank tests (with hypothesized value of ), along with mean and me- dian values among all subjects. acceptability and effectiveness values are presented adjacent to each other for a particular approach. key. sd = standard deviation, ci = confidence interval, a = acceptability, e = effectiveness; * = p < . , ** = p < . , *** = p < . acceptability an d effectiven ess of can didate wellness approach es am on g studen ts with m en tal h ealth problem s next, we examined the role of problems with burnout and mental health on perceptions of accepta- bility and effectiveness of wellness approaches (table ). bivariate correlations (i.e., spearman’s rho) revealed that burnout symptoms (measured by total score on the sbi) were significantly positively correlated with perceived acceptability ratings of the following approaches in the “institution” cate- gory: group exercise classes (spearman’s rho [rs] = . , p < . ), group mindfulness practices (rs = hish et al. . , p < . ), other group meditation (rs = . , p <. ), acupuncture (rs = . , p < . ), and indi- vidual therapy within our institution (rs = . , p = . ). burnout symptoms were significantly posi- tively correlated with perceived effectiveness ratings of the following approaches in the “institution” category: group mindfulness practices (rs = . , p < . ), other group meditation (rs = . , p < . ), and group therapy (rs = . , p < . ). burnout symptoms also were significantly positively correlated with acceptability and/or effectiveness ratings of the following “self” approaches: meditation (ac- ceptability [ac], rs = . , p < . ), using a mobile phone app to manage emotions (ac, rs = . , p < . ; effectiveness [ef], rs = . , p < . ), and writing in a journal (ac, rs = . , p < . ). conversely, burnout symptoms were significantly negatively correlated with perceived acceptability and effective- ness ratings of the following approaches in the “lab, department, & program” category: talking to your mentor (ac, rs = -. , p < . ; ef, rs = -. , p < . ), socializing with colleagues during lab functions (ac, rs = -. , p < . ; ef, rs = -. , p < . ), and attending department events (ac, rs = - . , p < . ; ef, rs = -. , p < . ; see table ). depression symptoms (measured by total score on the phq- ) were significantly negatively corre- lated with perceived acceptability and effectiveness ratings of approaches in the “lab, department, & program” category: socializing with colleagues during lab functions (ac, rs = -. , p < . ; ef, rs = - . , p < . ) and attending department events (ac, rs = -. , p < . ; ef, rs = -. , p < . ). de- pression symptoms were significantly negatively correlated with the perceived acceptability of spend- ing more time with friends in the area (rs = -. , p < . ) and watching movies with friends (rs = - . , p < . ), as well as with the perceived effectiveness of talking to friends who are far away (rs = - . , p < . ), talking to your mentor (rs = -. , p < . ), attending a skills training led by an expert (rs = -. , p < . ), and attending a workshop on emotional well-being with other graduate students (rs = -. , p < . ; see table ). mann-whitney u tests were used to compare median perceived acceptability and effectiveness scores between groups of students who did or did not have a history of mental health problems or treat- ment. as shown in table , analyses revealed that participants with a current psychiatric diagnosis (n = , . %), lifetime diagnosis (n = , . %), or with a self-reported history of psychological treatment (e.g., from a therapist, psychologist, psychiatrist, or medical provider prescribing psychiat- ric medications) in the past year (n = , . %) all rated individual therapy (within our institution) significantly more likely to be acceptable than participants without such histories (p < . ). partici- pants with a past year treatment history also rated the acceptability of individual therapy (outside our institution) significantly more positively compared to those without a past year history of receiving treatment for any mental health problem (p < . ). participants with a lifetime psychiatric disorder rated using a mobile phone app to manage emotions and writing in a journal significantly more likely to be acceptable and effective, compared to those without a lifetime history of any psychiatric disor- der (p < . ). table . correlation of acceptability and effectiveness scores with burnout scores, depres- sion scores, and presence of mental health problems burnout (rho, p) depres- sion (rho, p) current diagnosis (mwu, p) lifetime diagnosis (mwu, p) past year treatment (mwu, p) self exercise a . (. ) -. (. ) (. ) (. ) (. ) e . (. ) -. (. ) (. ) ** (. ) (n) (. ) one size doesn’t fit all burnout (rho, p) depres- sion (rho, p) current diagnosis (mwu, p) lifetime diagnosis (mwu, p) past year treatment (mwu, p) meditation a . * (. ) -. (. ) (. ) (. ) (. ) e . (. ) -. (. ) (. ) (. ) (. ) getting a mas- sage a . (. ) -. (. ) (. ) (. ) (. ) e . (. ) -. (. ) (. ) (. ) (. ) reading self-help books a . (. ) -. (. ) (. ) (. ) (. ) e . (. ) -. (. ) (. ) (. ) (. ) posting to/ re- ceiving advice on anonymous mes- sage boards a . (. ) . (. ) (. ) (. ) (. ) e -. (. ) -. (. ) (. ) (. ) (. ) attending reli- gious services a -. (. ) -. (. ) (. ) (. ) (. ) e -. (. ) -. (. ) (. ) (. ) (. ) private spiritual practice a -. (. ) -. (. ) (. ) (. ) (. ) e -. (. ) -. (. ) (. ) (. ) (. ) using a mobile phone app to manage emo- tions a . * (. ) . (. ) (. ) * (. ) (l) (. ) e . * (. ) . (. ) * (. ) (c) * (. ) (l) (. ) using a mobile phone app to manage weight a . (. ) -. (. ) (. ) (. ) (. ) e . (. ) -. (. ) (. ) (. ) (. ) listening to/ playing music a -. (. ) . (. ) (. ) (. ) (. ) e -. (. ) -. (. ) (. ) (. ) (. ) making art a . (. ) -. (. ) (. ) (. ) (. ) e -. (. ) -. (. ) (. ) (. ) (. ) hish et al. burnout (rho, p) depres- sion (rho, p) current diagnosis (mwu, p) lifetime diagnosis (mwu, p) past year treatment (mwu, p) writing in a jour- nal a . * (. ) . (. ) (. ) * (. ) (l) (. ) e . (. ) . (. ) (. ) * (. ) (l) (. ) watching movies by yourself a -. (. ) -. (. ) (. ) (. ) (. ) e -. (. ) -. (. ) (. ) (. ) (. ) friends & family talking to your parents a -. (. ) . ( . ) (. ) (. ) * (. ) (n) e -. (. ) -. (. ) (. ) ** (. ) (n) (. ) talking to friends who are far away a -. (. ) -. (. ) (. ) (. ) (. ) e -. (. ) -. ** (. ) (. ) (. ) (. ) spending more time with friends in the area a -. (. ) -. * (. ) (. ) (. ) (. ) e -. (. ) -. (. ) (. ) (. ) (. ) watching movies with friends a -. (. ) -. * (. ) (. ) (. ) (. ) e -. (. ) -. (. ) (. ) (. ) (. ) lab, depart- ment, & program talking to your mentor a -. * (. ) -. (. ) (. ) * (. ) (n) (. ) e -. *** (<. ) -. ** (. ) (. ) (. ) (. ) peer support groups a . (. ) . (. ) (. ) (. ) (. ) e . (. ) -. (. ) (. ) (. ) (. ) one size doesn’t fit all burnout (rho, p) depres- sion (rho, p) current diagnosis (mwu, p) lifetime diagnosis (mwu, p) past year treatment (mwu, p) socializing with colleagues during lab functions a -. * (. ) -. * (. ) (. ) (. ) (. ) e -. * (. ) -. ** (. ) (. ) ** (. ) (n) (. ) attending depart- ment events a -. ** (. ) -. ** (. ) (. ) * (. ) (n) (. ) e -. *** (<. ) -. *** (<. ) * (. ) (n) ** (. ) (n) (. ) institution group exercise classes a . * (. ) . (. ) (. ) (. ) * (. ) (n) e . (. ) -. (. ) (. ) (. ) (. ) group yoga class a . (. ) -. (. ) (. ) (. ) (. ) e . (. ) -. (. ) (. ) (. ) (. ) group mindful- ness practices a . ** (. ) -. (. ) (. ) (. ) ( . ) e . * (. ) -. (. ) (. ) (. ) (. ) other group meditation a . ** (. ) -. (. ) (. ) (. ) (. ) e . * (. ) -. (. ) (. ) (. ) (. ) massage a . (. ) . (. ) (. ) (. ) (. ) e . (. ) -. (. ) (. ) (. ) (. ) acupuncture a . * (. ) . (. ) (. ) (. ) (. ) e . (. ) -. (. ) ( . ) (. ) (. ) religious groups focused on spir- itual and emo- tional well-being a -. (. ) -. (. ) (. ) (. ) (. ) e -. (. ) -. (. ) (. ) (. ) (. ) group therapy a . (. ) . (. ) (. ) (. ) (. ) e . * (. ) . (. ) (. ) (. ) (. ) individual ther- apy (outside our institution) a -. (. ) . (. ) (. ) (. ) * (. ) (t) e . (. ) -. (. ) (. ) (. ) (. ) hish et al. burnout (rho, p) depres- sion (rho, p) current diagnosis (mwu, p) lifetime diagnosis (mwu, p) past year treatment (mwu, p) individual ther- apy (within our institution) a . * (. ) . (. ) * (. ) (c) * (. ) (l) ** (. ) (t) e . (. ) -. (. ) (. ) (. ) (. ) attending a skills training led by an expert a -. (. ) -. (. ) (. ) * (. ) (n) (. ) e -. (. ) -. ** (. ) (. ) * (. ) (n) (. ) using an app to manage mood that includes peer support from another graduate student a . (. ) . (. ) (. ) (. ) (. ) e . (. ) -. (. ) (. ) (. ) (. ) attending a workshop on emotional well- being with other graduate stu- dents a . (. ) -. (. ) (. ) (. ) (. ) (n) e -. (. ) -. * (. ) (. ) (. ) (. ) playing with therapy dogs a . (. ) . (. ) (. ) (. ) (. ) e -. (. ) -. (. ) (. ) (. ) (. ) full or half day event celebrating mental well-be- ing a . (. ) . (. ) (. ) (. ) (. ) e . (. ) . (. ) (. ) (. ) (. ) note. table presents results on correlations between acceptability and effectiveness of wellness approaches with burnout (sbi) and depression (phq- ) scores. results are presented as spearman’s rho, with p value in parentheses. it also presents results on mann-whitney u tests comparing acceptability and effectiveness scores of candidate wellness interventions between groups of students with and without mental health problems. re- sults are presented as mann-whitney u test scores, with p value in parentheses. the “current diagnosis” col- umn compares students with and without a current dsm- disorder diagnosis. the “lifetime diagnosis” col- umn compares students with and without a lifetime dsm- disorder diagnosis. the “past year treatment” col- umn compares students who have and have not received treatment for a mental health disorder in the past year. acceptability and effectiveness values are presented adjacent to each other for a particular approach. key. mwu = mann-whitney u test score; a = acceptability; e = effectiveness; (c) = median score is signifi- cantly greater in group of students with a current diagnosis; (l) = median score is significantly greater in group of students with a lifetime diagnosis; (t) = median score is significantly greater in group of students with past year treatment; (n) = median score is significantly greater in group of students without current di- agnosis, lifetime diagnosis, or past year treatment; * = p < . , ** = p < . , *** = p < . one size doesn’t fit all acceptability an d effectiven ess of can didate wellness approach es based on beliefs about psych ological services finally, we assessed how a participant’s attitudes regarding psychological treatment affected their per- ceptions of candidate approaches, to better understand the importance of stigma as a barrier to well- ness practices (table ). spearman’s correlations showed that favorable beliefs about psychological services were significantly positively correlated with perceived acceptability and/or effectiveness rat- ings of the following approaches: ( ) in the “self” category, reading self-help books (ac, rs = . , p < . ; ef, rs = . , p < . ) and watching movies by yourself (ef, rs = . , p < . ); ( ) in the “friends & family” category, spending more time with friends in the area (ac, rs = . , p < . ) and watching movies with friends (ac, rs = . , p < . ); ( ) in the “lab, department, & program” cate- gory, peer support groups (ac, rs = . , p < . ; ef, rs = . , p < . ); and ( ) in the “institution” category, group exercise classes (ef, rs = . , p < . ), group mindfulness practices (ac, rs = . , p < . ; ef, rs = . , p < . ), group therapy (ef, rs = . , p < . ), individual therapy outside our in- stitution (ac, rs = . , p < . ; ef, rs = . , p < . ), individual therapy within our institution (ac, rs = . , p < . ; ef, rs = . , p < . ), attending a workshop on emotional well-being with other graduate students (ef, rs = . , p < . ), and playing with therapy dogs (ef, rs = . , p < . ; see table ). table . correlation of acceptability and effectiveness scores with beliefs about psychological services scores baps (rho, p) self exercise acceptability -. (. ) effectiveness . (. ) meditation acceptability . (. ) effectiveness . (. ) getting a massage acceptability . (. ) effectiveness . (. ) reading self-help books acceptability . ** (. ) effectiveness . ** (. ) posting to/ receiving advice on anonymous mes- sage boards acceptability -. (. ) effectiveness . (. ) attending religious services acceptability -. (. ) effectiveness . (. ) private spiritual practice acceptability -. (. ) effectiveness . (. ) using a mobile phone app to manage emotions acceptability . (. ) effectiveness . (. ) hish et al. baps (rho, p) using a mobile phone app to manage weight acceptability . (. ) effectiveness . (. ) listening to/ playing music acceptability . (. ) effectiveness . (. ) making art acceptability -. (. ) effectiveness . (. ) writing in a journal acceptability . (. ) effectiveness . (. ) watching movies by yourself acceptability . (. ) effectiveness . * (. ) friends & family talking to your parents acceptability -. (. ) effectiveness . (. ) talking to friends who are far away acceptability . (. ) effectiveness . (. ) spending more time with friends in the area acceptability . * (. ) effectiveness . (. ) watching movies with friends acceptability . ** (. ) effectiveness . * (. ) lab, department, & program talking to your mentor acceptability . (. ) effectiveness . (. ) peer support groups acceptability . ** (. ) effectiveness . * (. ) socializing with colleagues during lab functions acceptability . (. ) effectiveness . (. ) attending department events acceptability . (. ) effectiveness . (. ) one size doesn’t fit all baps (rho, p) institution group exercise classes acceptability . (. ) effectiveness . * (. ) group yoga class acceptability . (. ) effectiveness . (. ) group mindfulness practices acceptability . * (. ) effectiveness . * (. ) other group meditation acceptability . (. ) effectiveness . (. ) massage acceptability -. (. ) effectiveness . (. ) acupuncture acceptability -. (. ) effectiveness . (. ) religious groups focused on spiritual and emo- tional well-being acceptability . (. ) effectiveness . (. ) group therapy acceptability . (. ) effectiveness . * (. ) individual therapy (outside our institution) acceptability . * (. ) effectiveness . *** (<. ) individual therapy (within our institution) acceptability . *** (<. ) effectiveness . *** (<. ) attending a skills training led by an expert acceptability . (. ) effectiveness . (. ) using an app to manage mood that includes peer support from another graduate student acceptability . (. ) effectiveness . (. ) attending a workshop on emotional well-being with other graduate students acceptability . (. ) effectiveness . ** (. ) playing with therapy dogs acceptability . (. ) effectiveness . * (. ) full or half day event celebrating mental well-being acceptability -. (. ) effectiveness . (. ) note. table presents results on correlations between acceptability and effectiveness of wellness approaches with beliefs about psychological services (baps) scores. results are presented as spearman’s rho, with p value hish et al. in parentheses. acceptability and effectiveness values are presented adjacent to each other for a particular ap- proach. key. baps = beliefs about psychological services; * = p < . , ** = p < . , *** = p < . discussion this study investigated perceptions of a wide range of strategies to help institutions improve wellness among biomedical doctoral students. we analyzed student ratings of acceptability and effectiveness of various approaches to explore which were most favored by students, and how current symptoms of burnout, depression, and sentiments of stigma related to mental health influenced these percep- tions. few interventions have been rigorously tested to improve mental health among biomedical doctoral students (tsai & muindi, ); our results extend the existing literature by identifying ap- proaches that may be best suited for this population. as research funding to study interventions is limited, it would be ideal to identify low-cost, scalable, organization-level interventions that the ma- jority of students find acceptable, rather than emphasizing interventions for individual students (glass, ; panagioti et al., ). our study provides guidance to program administrators and re- searchers desiring to undertake these kinds of studies. our results demonstrate that, although many candidate wellness approaches may be considered by institutions to support student wellness, only eight (i.e., exercise, listening to/playing music, talking to parents, talking to friends who are far away, spending more time with friends in the area, watching movies with friends, socializing with colleagues during lab functions, massage) were rated as highly likely to be both acceptable and effective in our biomedical doctoral student sample. notably, most of these approaches involve spending time socializing with friends and family, rather than activities or resources offered by the student’s department or institution. it is well-established that enhancing social interaction has a positive impact on a variety of physical and psychological indices of health (martino et al., ). regarding the other approaches that were rated favorably, there is a wealth of evidence demonstrating the effectiveness of exercise in reducing and preventing burnout and depres- sion symptoms among students (e.g., dyrbye et al., ; kvam et al., ; pascoe & parker, ). music has been shown to have beneficial effects in reducing stress and anxiety in stressful circum- stances (e.g., hirokawa & ohira, ; umbrello et al., ). massage therapy has also been increas- ingly used in the treatment of psychiatric symptoms and disorders (rapaport et al., ), with effi- cacy partly linked to reduction in cortisol levels (field, ). nonetheless, our results point to the conclusion that students may be most likely to believe more time spent with loved ones is the best way to support their wellness. a substantially larger number of the approaches we studied were rated as likely to be effective, but not as likely to be acceptable, indicating barriers to their use (see table ). future studies should in- clude rigorous evaluation of facilitators and barriers for these approaches to aid identification of im- plementation strategies that would directly target the identified barriers (baker et al., ). it is also important to acknowledge that students’ perceptions may be biased in favor of the immediate mood- boosting and stress-relieving benefits of resources such as massage therapy and pet therapy (ward- griffin et al., ; wood et al., ). conversely, they may be less likely to positively view interven- tions with sustained benefits that require more time and effort to take effect, such as psychotherapy and mindfulness training. students in our study with current or past mental health problems perceived distinct approaches to be more acceptable and effective, relative to students without mental health problems. in particular, students with a history of psychological treatment in the past year positively evaluated the effective- ness of individual therapy both within and outside our institution. it should be noted that there is some variability in the type, frequency, and duration of treatment received among individuals in this group. nevertheless, these results suggest that students are generally satisfied with their treatment and are consistent with prior evidence demonstrating that stigma associated with mental health care is reduced after patients enter therapy (collado et al., ). unsurprisingly, students with favorable one size doesn’t fit all perceptions of psychological services also rated therapy-based approaches more positively. further- more, students with a history of mental health problems or students with present symptoms of burn- out identified individual psychotherapy as a campus resource they would likely use. it is informative to know that biomedical doctoral students with a variety of mental health problems value psychologi- cal services, as differences in rates of use of these services have been reported among diverse gradu- ate programs (lipson et al., ). in addition, when making decisions about allocation of resources to improve wellness and reduce burnout, institutional leaders may benefit from considering that stu- dents with a history of psychiatric disorder or treatment for psychological problems may benefit from different approaches than students without such histories. of particular interest are the correlations among wellness approach ratings and levels of burnout and depression symptoms, for at least two reasons. first, individuals with high burnout scores rated mindfulness and meditation groups to be highly acceptable and effective. though these approaches were not rated highly by the overall sample, it may be that mindfulness-based approaches are more likely to be used by students presently experiencing symptoms of burnout. there are a number of po- tential explanations for this finding. one hypothesis is that these students may have already sought help and been introduced to mindfulness through other avenues, or perhaps they are more willing to try mindfulness due to the degree of their distress. in either case, institutions should consider priori- tizing such programs, as they target these at-risk individuals and have previous data supporting their efficacy in reducing psychological distress in doctoral students (e.g., barry et al., ; falsafi, ). second, students with either high burnout symptoms or high depression symptoms negatively evalu- ated several approaches involving social engagement (e.g., spending more time with friends in the area, socializing with colleagues during lab functions, talking to your mentor). one might hypothesize that these activities, rather than supporting wellness, may contribute to burnout and depression among a subset of students. our findings suggest that a primary source for psychological distress among struggling students may be the people in their departments—namely, their peers and men- tors—thus emphasizing the need for mentor-, department-, and institution-level interventions that target the student’s environment (scheirer, ). alternatively, these individuals, because they are highly burned out or depressed, may be more likely to avoid such activities. nevertheless, these re- sults demonstrate that approaches that most students in our sample found agreeable for promoting wellness, such as socializing with peers, may not be as acceptable for students already experiencing a high degree of burnout or depression symptoms. this emphasizes the importance of maintaining a range of approaches to address wellness, including counseling and psychological services and mind- fulness practices, for individuals already experiencing significant psychological distress that prevents them from accessing or benefitting from other resources. a notable finding is that although app-based approaches were rated unfavorably among the entire sample, the ratings of “using a mobile phone app to manage emotions” were positively correlated with burnout symptoms, and this approach was favorably rated by students with a lifetime history of mental health problems. this finding suggests that app-based interventions to improve wellness may have greater appeal to students who are experiencing higher burnout or have a history of mental health problems. lim itation s our findings are reported with acknowledgement of several important limitations. first, the sample size of this study, which comprised . % of the total eligible students at our institution, limited power to detect significant results. second, we studied only one population of doctoral students (i.e., biomedical sciences), limiting generalizability of our results to other doctoral students. third, partici- pants were recruited based on advertisements, introducing a self-selection bias. fourth, self-report questionnaires are subject to problems involving response bias, participant insight, and differences in responding styles (paulhus & vazire, ). finally, the large number of statistical tests conducted in this study introduces the risk of false positive findings. to mitigate this risk, we report all p-values for hish et al. each statistical test, allowing readers to scrutinize each finding individually, and we note that even with a conservative alpha correction to <. , the results that support conclusions and recommenda- tions of this study remain statistically significant. recommendations recommendations for researchers: • randomized controlled trials should be conducted to assess the effectiveness in reducing problems with mental health of the approaches rated both highly likely to be acceptable and effective (i.e., exercise, listening to/playing music, talking to parents, talking to friends who are far away, spending more time with friends in the area, watching movies with friends, so- cializing with colleagues during lab functions, massage). • studies should investigate facilitators and barriers to approaches rated highly likely to be ef- fective, but not acceptable (i.e., peer support groups, group exercise/yoga/mindfulness clas- ses, individual therapy, therapy dogs). • more research is needed on mobile device-based interventions to support wellness in this population. • future studies should recruit large, nationally- and internationally-representative samples from diverse doctoral programs to validate our findings. recommendations for practitioners: • social engagement is highly valued by biomedical doctoral students, above and beyond insti- tution-based wellness resources. allow students flexibility in their schedules to engage with friends and colleagues on their own terms, and allow time to balance life activities (e.g., exer- cise) and hobbies (e.g., music). • students with mental health problems may not be able to benefit from the same resources as other students—for example, those involving social engagement. maintain robust campus psychological services for these struggling students. identify barriers to use of psychological services at your institution, and attempt to mitigate these barriers. • students suffering from symptoms of burnout may particularly benefit from mindfulness- based approaches to wellness. conclusion the field of biomedical graduate education research continues to face challenges related to being in its early stages, only recently identifying significant problems with mental health among its students and facing a dearth of interventions research to solve these problems. as a first step towards further interventions research, this study investigated perceptions of a wide range of approaches to improve wellness among biomedical doctoral students, analyzing student ratings of acceptability and effective- ness of the approaches. we found that overall, students prefer managing their wellness with the help of friends and family, rather than their department or institution. in addition, we identified wellness approaches that may be effective for students that have experienced burnout or mental health prob- lems, particularly individual therapy. we recommend that these interventions be further investigated in future study, along with rigorous evaluation of facilitators and barriers for these approaches. fu- ture studies should also strive to recruit nationally- and internationally-representative samples of stu- dents from diverse doctoral programs, to test the validity of our findings among different popula- tions. our results provide important insights guiding next steps in intervention testing and implementation to support biomedical doctoral students. we hope that our report offers guidance to administrators working to identify resources 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( ). creating structured opportunities for social engagement to promote well-being and avoid burnout in medical students and residents. academic medicine, ( ), - . https://doi.org/ . /acm. biographies alexander j. hish, m.d. completed his medical education at the duke university school of medicine and is completing a combined residency in pediatrics, psychiatry, and child and adolescent psychiatry at mount si- nai hospital in new york. gabriela a. nagy, ph.d. is a clinical psychologist and assistant professor at the duke university school of medicine and the school of nursing. her research is funded by the national institutes of health and internal grants and primarily centers on reducing health disparities. caitlin fang, ph.d. is a clinical psychologist and clinical associate at the duke university school of medicine. upon completion of her postdoc- toral fellowship in july , she will be starting a community private practice. https://doi.org/ . /jama. . https://doi.org/ . /joim. https://doi.org/ . /s - - - https://doi.org/ . / . . https://doi.org/ . /ser https://doi.org/ . /acm. one size doesn’t fit all lisalynn kelley, ccrp has over years of research experience within the duke department of psychiatry & behavioral sciences. she has been involved in conducting and managing a range of studies on emotion regu- lation, sensory processing, psychopathology, and treatment. christopher v. nicchitta, ph.d. is a professor in the departments of cell biology, biochemistry, and pathology at duke university. he has previously served as the associate dean for research training at the of- fice of biomedical graduate education and director of graduate studies for the department of cell biology in the school of medicine. kafui dzirasa, m.d., ph.d. is a psychiatrist and national institutes of health-funded brain researcher at duke university. he is also a public engagement fellow of the american association for the advancement of science. m. zachary rosenthal, ph.d. is a clinical psychologist and associate professor at duke university medical center and duke university. he has previously served as the vice chair of clinical services for the de- partment of psychiatry and behavioral sciences. 	acceptability and perceived effectiveness of approaches to support biomedical doctoral student wellness: one size doesn’t fit all 	abstract 	introduction 	literature review 	biomedical doctoral study programs and mental health 	acceptability and effectiveness 	previously tested interventions 	study aims 	methods 	participants and recruitment 	study protocol 	interviews 	measures 	acceptability and effectiveness of candidate wellness approaches 	statistical methods 	results 	acceptability and effectiveness of candidate wellness approaches 	acceptability and effectiveness of candidate wellness approaches among students with mental health problems 	acceptability and effectiveness of candidate wellness approaches based on beliefs about psychological services 	discussion 	limitations 	recommendations 	conclusion 	references 	biographies [pdf] caring science: transforming the ethic of caring-healing practice, environment, and culture within an integrated care delivery system. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /tpp/ - corpus id: caring science: transforming the ethic of caring-healing practice, environment, and culture within an integrated care delivery system. @article{durant caringst, title={caring science: transforming the ethic of caring-healing practice, environment, and culture within an integrated care delivery system.}, author={anne foss durant and shawna m. mcdermott and gwen kinney and trudy triner}, journal={the permanente journal}, year={ }, volume={ }, pages={ e - } } 	anne foss durant, shawna m. mcdermott, + author trudy triner 	published 	medicine 	the permanente journal in early , leaders within kaiser permanente (kp) northern california's patient care services division embarked on a journey to embrace and embed core tenets of caring science into the practice, environment, and culture of the organization. caring science is based on the philosophy of human caring, a theory articulated by jean watson, phd, rn, ahn-bc, faan, as a foundational covenant to guide nursing as a discipline and a profession. since , caring science has enabled kp northern… expand view on pubmed thepermanentejournal.org save to library create alert cite launch research feed share this paper citationsbackground citations view all tables and topics from this paper 	 table 	 table 	advocate (person) 	arthropod identified:prid:pt:xxx:nom:perm mount citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency caring science education: the essence of professional practice for the registered nurse 	linda c. ackerman 	psychology 	 save alert research feed healthcare interprofessional team members' perspectives on human caring: a directed content analysis study 	holly wei, j. watson 	psychology, medicine 	international journal of nursing sciences 	 	 	pdf 	view excerpts, cites background save alert research feed model of transpersonal caring in nursing home care according to favero and lacerda: case report. 	jéssica alline pereira rodrigues, m. lacerda, l. favero, i. gomes, marineli joaquim méier, marilene loewen wall 	medicine 	revista gaucha de enfermagem 	 	 	pdf 	view excerpts, cites background save alert research feed survey development: caregivers help define a tool to measure cultures of care 	j. mensik, wendy leebov, amy steinbinder 	psychology, medicine 	the journal of nursing administration 	 	 	view excerpt, cites background save alert research feed aging in resilient communities-an alpine case study: the senior living lab experience 	s. riva-mossman 	sociology 	 save alert research feed constructing a caring training content for nurse managers: a delphi study 	r. chen, yilan liu 	medicine 	 	pdf save alert research feed aligning theory and evidence-based practices to enhance human flourishing in nurse executives 	j. d'alfonso 	medicine 	 save alert research feed a geriatrician’s guide to accountable care implementation: thickets and pathways 	terry e hill 	medicine 	 save alert research feed humanistic care in nursing improves postoperative recovery and reduces stress responses of breast cancer patients during the perioperative period 	fengling tao, jian-ping ji, l. cheng, l. zhang 	 	pdf 	view excerpt, cites background save alert research feed action research healthcare 	h. bradbury, s. lifvergren 	medicine 	healthcare management forum 	 	 	pdf 	view excerpt, cites background save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency human caring science: a theory of nursing 	j. watson 	medicine 	 	 save alert research feed caring science and human caring theory: transforming personal and professional practices of nursing and health care. 	jean watson 	medicine 	journal of health and human services administration 	 	 	view excerpt, references background save alert research feed caring theory as an ethical guide to administrative and clinical practices 	jean watson 	sociology, medicine 	nursing administration quarterly 	 	 	pdf save alert research feed the power of wholeness, consciousness, and caring a dialogue on nursing science, art, and healing 	w. cowling, m. smith, jean watson 	psychology, medicine 	ans. advances in nursing science 	 	 save alert research feed caring about caring: developing a model to implement compassionate relationship centred care in an older people care setting. 	b. dewar, m. nolan 	medicine 	international journal of nursing studies 	 	 save alert research feed creating a culture of caring to foster a healthy workplace 	m. green, dawn mcardle, c. robichaux 	medicine 	 	 save alert research feed creating a caring science curriculum : an emancipatory pedagogy for nursing 	m. hills, j. watson 	medicine 	 	 save alert research feed nursing : the philosophy and science of caring 	jean watson 	medicine 	 	 save alert research feed quality caring in nursing and health systems: implications for clinicians, educators, and leaders 	j. duffy 	psychology 	 	 	pdf save alert research feed integrating human caring science into a professional nursing practice model. 	k. drenkard 	medicine 	critical care nursing clinics of north america 	 	 save alert research feed ... ... related papers 	abstract 	tables and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue untitled s h e a e x p e r t g u i d a n c e animals in healthcare facilities: recommendations to minimize potential risks rekha murthy, md; gonzalo bearman, md, mph; sherrill brown, md; kristina bryant, md; raymond chinn, md; angela hewlett, md, ms; b. glenn george, jd; ellie j.c. goldstein, md; galit holzmann-pazgal, md; mark e. rupp, md; timothy wiemken, phd, cic, mph; j. scott weese, dvm, dvsc, dacvim; david j. weber, md, mph purpose animals may be present in healthcare facilities for multiple reasons. although specific laws regarding the use of service animals in public facilities were established in the united states in , the widespread presence of animals in hospitals, including service animals to assist in patient therapy and research, has resulted in the increased presence of animals in acute care hospitals and ambulatory medical settings. the role of animals in the transmission of zoonotic pathogens and cross-transmission of human pathogens in these settings remains poorly studied. until more definitive information is available, priority should be placed on patient and healthcare provider safety, and the use of standard infection prevention and control measures to prevent animal-to-human transmis- sion in healthcare settings. this paper aims to provide general guidance to the medical community regarding the manage- ment of animals in healthcare (ahc). the manuscript has four major goals: . review and interpret the medical literature regarding risks and evidence for animal-to-human transmission of patho- gens in the healthcare setting, along with the potential benefits of animal-assisted activities in healthcare. . review hospital policies related to ahc, as submitted by members of the shea guidelines committee. . summarize a survey that assessed institutional ahc policies. . offer specific guidance to minimize risks associated with the presence of ahc settings. recommendations for the safe oversight and management of ahc should comply with legal requirements and minimize the risk of transmission of pathogens from animals to humans when animals are permitted in the healthcare setting. although little published literature exists on this topic, we provide guidance on the management of ahc in four categories: animal-assisted activities, service animals, research animals, and personal pet visitation. institutions considering these programs should have policies that include well-organized communication and education directed at healthcare personnel (hcp), patients, and visitors. appropriately designed studies are needed to better define the risks and benefits of allowing animals in the healthcare setting for specific purposes. background the role of animals in healthcare settings (ahc) people come into contact with animals in a variety of settings including households (pets), occupational exposure (veterinarians, farmers, ranchers, and forestry workers), leisure pursuits (hunting, camping, and fishing), petting zoos, and travel to rural areas. pet ownership is common in the united states. a national poll of pet owners revealed that in – , % of us households included a pet with the number of households owning specific animals as follows: dogs . million, cats . million, freshwater fish . million, birds . million, small animals . million, reptiles . million, horses . million, and saltwater fish . . patients in healthcare facilities come into contact with ani- mals for main reasons: the use of animals for animal-assisted activities (animal-assisted activities encompass “pet therapy,” “animal-assisted therapy,” and pet volunteer programs) and the use of service animals such as guide dogs for the sight impaired. other reasons for contact with ahc include the use of animals in research or education, and personal pet visits to their owners in the hospital (personal pet visitation). risks to patients from exposure to animals in the healthcare setting may be associated with transmission of pathogens through affiliations: . cedars-sinai medical center, los angeles, california; . virginia commonwealth university, richmond, virginia; . kaiser permanente medical center, woodland hills, california; . university of louisville, louisville, kentucky; . sharp metropolitan medical campus, san diego, california; . university of nebraska medical center, omaha, nebraska; . unc health care system and unc school of medicine, chapel hill, north carolina; . david geffen school of medicine at ucla, r.m. alden research laboratory, santa monica, california; . university of texas medical school, houston, texas; . university of nebraska medical center, omaha, nebraska; . university of guelph centre for public health and zoonoses, guelph, ontario, canada; . university of north carolina, chapel hill, north carolina. © by the society for healthcare epidemiology of america. all rights reserved. - x/ / - . doi: . /ice. . received december , ; accepted december , ; electronically published march , infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core direct or indirect contact or, less likely, droplet/aerosol trans- mission (table ); however, insufficient studies are available to produce generalizable, evidence-based recommendations (table ); therefore, wide variations exist in policies and practice across healthcare institutions. risks of animals in healthcare few scientific studies have addressed the potential risks of animal- to-human transmission of pathogens in the healthcare setting. furthermore, because animals have, in general, been excluded from hospitals, experience gained by means of case reports and outbreak investigations is minimal (table ). however, general knowledge of zoonotic diseases, case reports, and limited research involving animals in healthcare facilities indicate cause for concern. for example, human strains of methicillin-resistant staphylococcus aureus (mrsa) have increasingly been described in cats, dogs, horses, and pigs, with animals potentially acting as sources of mrsa exposure in healthcare facilities. mrsa is just one of many potential pathogens; a wide range of pathogens exist, including common healthcare-associated pathogens (eg, clostridium difficile, multidrug-resistant enterococci), emerging infectious diseases (eg, extended spectrum β-lactamase (esbl)– producing enterobacteriaceae), common zoonotic pathogens (eg, campylobacter, salmonella, and dermatophytes), rare but devastating zoonotic pathogens (eg, rabies virus), and pathogens associated with bites and scratches (eg, pasteurella spp., capnocytophaga canimorsus, and bartonella spp.). – this white paper represents an effort to analyze the available data and provide rational guidance for the management of animals in acute care and ambulatory medical facilities, including animal-assisted activities, service animals, research animals, and personal pet visitation. it describes the need for future studies to close the gaps in knowledge about animals in healthcare settings. the term guidance deserves special emphasis: this document should not be viewed as an evidence-based guideline but as a set of practical, expert-opinion–based recommendations for a common healthcare epidemiology question, made in the absence of robust evidence to support practice. much of the content is informational and most of the recommendations in this document should be viewed as suggested actions to consider in the absence of a recognized standard or regulation. adoption and implementation is expected to occur at the discretion of individual institutions. when clear regulatory or legislative mandates exist related to ahc (eg, americans with disabilities act), they are noted. previous guidelines that have covered some of the issues addressed in this document include the “guidelines for animal-assisted interventions in healthcare facilities” and the “centers for disease control and prevention (cdc)/healthcare infection control and prevention advisory committee guidelines for environmental infection control in health-care facilities.” in this document, we use the following definitions: . animal-assisted activities: pet-therapy, animal-assisted therapy, and other animal-assisted activities. while these practices and their purposes may vary because these ani- mals and their handlers are (or should be) specifically trained, they will be referred to as animal-assisted activities animals in this document. table . selected diseases transmitted by dogs stratified by transmission route transmission route selected diseases direct contact (bites) rabies (rabies virus) capnocytophaga canimorsus infection pasteurellosis (pasteurella spp.) staphylococcus aureus, including methicillin-resistant strains streptococcus spp. infection direct or indirect contact flea bites, mites fungal infection (malassezia pachydermatis, microsporum canis, trichophyton mentagrophytes) staphylococcus aureus infection mites (cheyletiellidae, sarcoptidae) fecal-oral campylobacteriosis (campylobacter spp.) paratyphoid (salmonella spp.) giardiasis (giardia duodenalis) salmonellosis (salmonella enterica subsp enterica serotypes) droplet chlamydophila psittaci vector-borne ticks (dogs passively carry ticks to humans; disease not transmitted directly from dog to human) ▪ rocky mountain spotted fever (rickettsia ricksettsii) ▪ ehrlichiosis (ehrlichia spp.) fleas ▪ dipylidium caninum ▪ bartonella henselae infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core . service animals: specifically defined in the united states under the americans with disabilities act (ada). . research animals: animals approved for research by the facility’s institutional animal care and use committee (iacuc). . personal pet visitation: defined as a personal pet of a patient that is brought into the facility specifically to interact with that individual patient. intended use this document is intended to help acute care hospitals and ambulatory care facilities develop or modify policies related to animals based on their role (ie, animal-assisted activities, service animals, research animals, and personal pet visitation). it is not intended to guide the management of animals in other healthcare facilities such as assisted living, nursing homes, or extended care facilities. society for healthcare epidemiology of america (shea) writing group the writing group consists of members of the shea guide- lines committee, including those with research expertise on this topic, and invited members with related expertise in legal affairs, veterinary medicine, and infectious diseases. key areas addressed we evaluated and summarized the literature and surveyed current practices in healthcare institutions around four major aspects of ahc: . animal-assisted activities . service animals . animals in research . personal pet visitation table . studies of pathogens and outbreaks associated with animals in healthcare (ahc) author, year, (ref. no.) methodology findings lefebvre, ( ) healthy visitation dogs (n, ) assessed for presence of zoonotic pathogens. zoonotic agents isolated from percent of animals including: toxigenic clostridium difficile ( . %), salmonella spp. ( %), extended spectrum beta- lactamase or cephaloporinase e. coli ( %), pasteurella spp. ( %), malassezia pachydermatis ( %), toxocara canis ( %), and ancylostoma caninum ( %) scott, ( ) epidemic of methicillin-resistant staphylococcus aureus (mrsa) on a rehabilitation geriatric ward paws and fur of a cat that roamed the ward were heavily colonized by mrsa, and the cat was considered to be a possible vector for the transmission of mrsa lyons, ( ) outbreak of salmonella heidelberg in a hospital nursery outbreak traced to infected calves on a dairy farm where the mother of the index patient lived richet, ( ) outbreak of rhodococcus (gordona) bronchialis sternal surgical site infections after coronary artery bypass surgery outbreak linked to a nurse whose hands, scalp, and vagina were colonized with the epidemic pathogen. although cultures of neck-scruff skin of of her dogs were also positive, whether the animals were the source for colonizing the nurse or whether both the animals and nurse were colonized from an environmental reservoir could not be determined. chang, ( ) an evaluation of a large outbreak of malassezia pachydermatis in an intensive care nursery isolates from all case patients, additional colonized infants, healthcare worker, and pet dogs owned by hcp had identical patterns of restriction fragment- length polymorphisms (rflps). the authors believed it likely that m. pachydermatis was introduced into the intensive care nursery from the healthcare worker’s hands after being colonized from pet dogs at home and then persisted in the nursery through patient-to-patient transmission. patient infections were not benign and included bloodstream infections, urinary tract infections, case of meningitis, and asymptomatic colonizations. mossovitch, ( ), snider, ( ) multiple nosocomial outbreaks of microsporum canis (ringworm) in newborn nurseries or neonatal intensive care units. person-to-person transmission described; in neonatal intensive care unit outbreak, the source of infection in the neonatal intensive care unit outbreak was a nurse likely infected from her pet cat. shea expert guidance: animals in healthcare facilities downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core guidance and recommendation format because this topic lacks the level of evidence required for a more formal guideline using the grade or a similar system for quantitating scientific papers, no grading of the evidence level is provided for individual recommendations. guidance statements are provided for each of the sections identified in our review. each guidance statement is based on a synthesis of the limited available evidence, theoretical rationale, practical considerations, analysis from a survey of shea membership and the shea research network, writing group opinion, and consideration of potential harm where applicable. review of submitted policies and procedures healthcare facilities we reviewed and compared hospital policies that were submitted from various institutions by the writing group and members of the shea guidelines committee and summar- ized the policies and procedures submitted by healthcare facilities. animal-assisted activities (animal-assisted or “pet therapy” programs) of the facility policies submitted, mentioned specific recommendations regarding animal-assisted activities. most policies defined an animal-assisted activities animal as a per- sonal pet that, with its owner or handler, provides comfort to patients in healthcare facilities. dogs were almost exclusively utilized in animal-assisted activities; however, three policies allowed cats or miniature horses as animal-assisted activities animals. in general, animal-assisted activities animals were required to be > – years of age, be fed a fully cooked diet for the preceding days, not be in estrus, have lived with their owner in a residence for > months, and be housebroken, well mannered, obedient, easily controlled by voice command, and restrained by a short ( – feet) leash or lead. eight policies required animals to be bathed and groomed within hours prior to each visit, including brushing and filing of nails. a total of policies required a nationally or regionally recognized organization to approve the animal for registration and certification of its training as an animal-assisted activities animal. almost all policies required that the animals undergo regular (usually annual) evaluation by a veterinarian con- firming their good health, that they be up-to-date on vacci- nations, and that they have normal laboratory work ( policies required routine negative stool cultures prior to participation). animal-assisted activities animals and handlers were routinely provided hospital-specific photo identification and uniforms identifying them as an animal-assisted activities team. some policies specifically excluded certain patients from animal-assisted activities (table ). these policies required staff members, visitors, and patients to perform hand hygiene both prior to and after interacting with animal-assisted activities animals. some policies stated that during animal-assisted activities, a barrier such as a sheet or towel be placed between the animal and the patient, either on the bed over the bedding, on a chair, or on a lap. in addition, the animal-assisted activ- ities animal handler was usually responsible for cleaning up after any potential spills or environmental contamination during a therapy animal visit. service animals a total of hospitals submitted their policies on service animals (table ). most policies mentioned that service animals are not pets, and a few institutions specified that comfort and companionship animals are not service animals. although most policies specifically allowed dogs, some also allowed the use of cats and miniature horses. a few institutions considered emotional support and seizure alert animals to be service animals. requirements of service animals consistently included up-to-date vaccinations and certification of good health, and that service animals are required to be housebroken and under the control of the handler at all times, usually with a leash. further, a physician order and permission from the infection prevention and control department were often required. in general, service animals were prohibited from drinking out of public water areas (eg, toilets, sinks), from having contact with persons with non-intact skin, and being kept overnight. most policies clearly stated that care of the service animal was the complete responsibility of the patient, or his or her designee. areas that policies often listed as off-limits included operating rooms, post-anesthesia areas, heart and vascular procedure rooms, intensive care units, family birthing areas, pharmacy, central sterile processing, food preparation areas, nurseries, medication rooms, diagnostic areas, dialysis units, playrooms, rooms where the patient has a roommate, rooms that house patients with documented animal allergies or phobias, and around patients with altered mental status or post-splenectomy patients. the policies for visitors with service animals were similar to those applicable to patients, although some healthcare facilities chose to prohibit service animals of visitors from intensive care units, oncology and transplant units, and from visiting patients on isolation table . exclusion criteria cited by hospital policies related to animal-assisted activities type of patient policies citing listed exclusion criteria (n = ), no. (%) isolation (contact/airborne/droplet, etc.) ( ) immunocompromised (definitions varied) ( ) allergy to animals ( ) fear of animals ( ) open wounds ( ) behavior or psychiatric disorder ( ) infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core precautions. many policies required immediate reporting of any injuries to the appropriate hcp (eg, risk management). research animals only one-third of the policies discussed research animals. those noted that although it is sometimes necessary for research animals to be present in patient care areas, every effort must be made to minimize interactions between the animals, hcp, and patients. these policies stated that all animal research must be approved by the institution’s iacuc and, when research animals must be present in patient care areas, animal visits must be scheduled to minimize overlap with patient care activities. policies also detailed how animals should be transported safely in the facility. for example, small animals should be caged and covered with drapes or opaque material. other recommendations said that animals should only be transported in service elevators not utilized by patients. in cases where macaque nonhuman primates are research ani- mals, one policy recommended that a bite and scratch kit and a copy of the cdc guideline on treatment of herpes b virus accompany the animals. policies reinforced the importance of comprehensive record keeping and appropriate waste disposal, noting that the principal investigator is ultimately responsible for these tasks. policies varied on internal notification (eg, infection prevention and control, safety compliance office). personal pet visitation a total of policies allowed personal pet visitation (table ). some had no restrictions, while others stipulated that visita- tion could occur only under exceptional (compassionate) circumstances. most of these institutions explicitly barred certain pets from visitation, including animals recently adopted from shelters, rodents, birds, reptiles, and amphibians. some required that pets be at least – years of age and have resided in the patient’s household for at least – months. while most institutions outlined prerequisites necessary to allow personal pet visitation, some only required permission from the nursing manager and attending physician. some also required final approval by infection prevention and control (ipc). four institutions required veterinarian approval. table . summary of responses from hospitals submitting policies and procedures on service animals situation hospitals (n = ), no. (%) policies specified that service animals be allowed in all areas where individuals would normally be allowed, except in areas where isolation precautions are in place or where the animal’s presence may compromise patient care (eg, operating room (or), intensive care unit, behavioral health). ( ) policy specified type of service animals, usually dogs ( ) including institutions that allowed cats for seizure alerts or emotional support policy allowed use of animals for seizure alerts or anxiety related to ptsd ( ) policy included specific questions that could be asked if the facility is unsure whether an animal is a service animal: ( ) whether the animal is required because of a disability, and ( ) what work or tasks the animal has been trained to perform (however, some policies indicated that asking about the specific training is against the american disabilities act (ada) recommendations) ( ) policy stated that proof is not required whether an animal is designated as a service animal ( ) institution each: requires veterinarian’s certificate of good health and immunizations; wear tag evidencing vaccination and for dogs, license tags; provide identification of service animal as available and validation of current rabies vaccination policy stated that comfort or companionship animals do not qualify as service animals ( ) policy outlined situations when service animals can be removed (eg, animals that are out of control, disruptive to patient care, not housebroken, and have behavior problems) ( ) policy outlined provisions when owner or owner’s family/friends are unable to care for service animal ( ) policy clearly stated that care of service animal is the responsibility of the patient (or designee) ( ) policy required that the service animal be on a leash or harness at all times, unless these devices would interfere with the service animals’ work or cause interruption of patient care ( ) shea expert guidance: animals in healthcare facilities downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core survey of shea membership on animals in healthcare we conducted a survey of the shea membership and shea research network from february through may and summarized responses from members’ institutions about existing policies related to ahc. survey results a total of shea members and members of the shea research network ( . % response of , members) responded to the survey regarding their institutions’ policies for ahc (table ). the survey included questions regarding situations in which animals would be encountered in the healthcare facility: animal-assisted activities (animal-assisted therapy programs/“pet therapy”), service animals, research animals, and personal pet visitation. the majority of respon- dents worked at acute care hospitals ( %). additional facilities included freestanding children’s hospitals ( %), freestanding clinics ( %), and other facility types ( %) such as specialty hospitals, research hospitals, and rehabilitation hos- pitals. the majority of responses were from university/teach- ing hospitals ( %) or university/teaching-affiliated hospitals ( %) and non-teaching hospitals ( %). we received addi- tional responses from veterans affairs and other government hospitals ( %), free-standing pediatric hospitals ( %), teach- ing non-university affiliated hospitals, and miscellaneous facilities ( %). most of the respondents were from us facilities ( %) with representation from canada ( %), latin america ( %), europe ( %), asia ( %), middle east ( %) and other regions ( %), while % did not identify their region. of the non-us respondents, only were linked to institution- identifying information; consequently, data from only these institutions were analyzed. not all responding healthcare facilities with animal pro- grams had formal policies. the following is the percentage of facilities that allowed animals but had no formal policy: animal-assisted activities ( . %, of ), service animals ( . %, of ), research animals ( . %, of ), personal pet visitation ( . %, of ). infection prevention and control frequently administered policies, with participation by human resources and legal services. notably, us facilities, including a veteran’s hospital, reported that they did not allow service animals. a total of responses ( . %) addressed questions regarding the presence of animals in specific areas of the hospital. almost all facilities restricted animals from the operating room, kitchen, central processing, and pharmacy (table ). overall, us facilities and unidentified facilities had no restrictions; some cited the ada as the reason. table . summary of policy requirements for personal pet visitation situation institutions (n = ), no. (%) did not allow personal pets / ( ) no response or did not submit policy and procedure / ( ) allowed personal pets / ( ) allowed only dogs and cats / ( ) allowed dogs only / ( ) specified age (> – y/o) and duration of ownership (> – mo) / ( ) did not specify type of pets / ( ) excluded many types of animals / ( ) visitation prohibited for patients in isolation, icu, or immunocompromised / ( ) case-by-case determination / ( ) allowed pets for extenuating circumstances / ( ) specified duration of visitation ( – hr) / ( ) required certification of pet’s immunization status and good health / ( ) note. icu, intensive care unit. table . allowable uses of animals in healthcare (ahc) facilities, stratified by major categories service animals, no. (%) animal-assisted activities, no. (%) personal pet visitation, no. (%) research animals, no. (%) responses, no. (%) yes no na yes no na yes no na yes no na us facilities ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) non-us facilities ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) unknown ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ) ( ) ( ) ( ) total ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) note. na, not available. infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core all facilities ( ) that permitted animal-assisted activities allowed dogs, with % of facilities also allowing cats, % allowing miniature horses, and % allowing primates. in summary, our review of institutional policies and of the survey results demonstrated substantial variation in practice around the issues related to ahc. guidance statement see table for summary of ahc classification and selected key recommendations from this document. animal-assisted activities background the origins of animal-assisted activities remain obscure but seem to revolve around the “attachment theory” of sigmund freud and may have initially been practiced in th century england. in , dogs were used in therapeutic intervention with psychiatric patients at st. elizabeth hospital in washington, dc. since then, there have been increasing roles for ahc facilities. there are several categories of activities in which animals may be used with minor differences in definitions that often overlap: . animal-assisted therapy, which includes animals as part of a specific treatment program. . animal-assisted education (aae), which includes goal- directed interventions designed to promote improvement in cognitive functioning of the person(s) involved and in which a specially trained dog and handler team is an integral part of an educational process. . animal-assisted activities that include programs for visita- tion in hospitals that use specially trained animals and their handlers. animal-assisted activities may include recrea- tional and social purposes or goal-directed interventions in which an animal is involved as part of an organized treatment process, which may provide opportunities for motivational, educational, and/or recreational benefits to enhance a person’s quality of life. . animal visitation programs and “pet therapy” are inter- changeable terms and are incorporated into the more general category of animal-assisted activities for the purposes of this document. while individual institutions may have specific programs involving animals in the hospital, the vast majority of hospitals have “animal-assisted activities” as defined in this document. table . areas of healthcare facility in which animals were prohibited (responses = ) area in healthcare facility percent of facilities prohibiting animals from respective areas, no. (%) intensive care unit ( ) operating room ( ) kitchen ( ) pharmacy ( ) step-down units ( ) recovery room ( ) central processing ( ) table . summary of animals in healthcare classification and selected recommendations animal-assisted activities servicea research personal pet program written policy recommended yes yes yes yes federal legal protection no yes no no animal visit liaison yes no iacuc yes infection prevention and control notification of animal visit/session yes yes yes yes infection prevention and control consultation for restricted areas yes yes yes yes visit supervised yes no yes yes visit predetermined yes no yes yes animal and handler/owner performs trained tasks see text yes n/a no specially trained handler yes yes yes no health screening of animals and handlers yes n/a n/a no documentation of formal training yes no n/a no animal can be a pet yes no no yes animal serves solely for comfort or emotional support see text no n/a yes identification with id tag yes not required n/a yes/no animal required to be housebroken yes yes n/a yes permitted animals dogs yes yes n/a yes other animals see text see text n/a see text note. iacuc, institutional animal care and use committee. apolicy to reflect ada and regulatory compliance. inquiries limited by ada to tasks performed for patient. shea expert guidance: animals in healthcare facilities downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core several published studies promote animal-assisted activities to improve psychological health, pain management, and lowering of blood pressure among patients and staff (table ). most of these studies, though not scientifically rigorous, provide evi- dence of beneficial impacts on various patient populations from animal-assisted activities. in a review of “pet-facilitated therapy” as an aid to psychotherapy, draper et al noted that although a literature review conducted in revealed more than , articles on the human-animal bond, only controlled studies evaluating the therapeutic value of animal- assisted activities had been reported as of . these studies concluded that the benefits of animal-assisted activities relied heavily on anecdotal reports and the widespread attachment of persons with animals. in a critical appraisal of the literature from through , allen concluded that most reports describing the effects of human-canine interactions fell into the lowest category of scientific studies (ie, descriptive studies and expert opinion). newer research, sometimes using con- trolled trials, has provided evidence that companion animals provide health benefits in the home setting. an increasing number of clinical trials are evaluating the benefits of animal- assisted activities in the hospital (table ). recently the american heart association (aha) published a scientific statement regarding pet ownership and cardiovascular risk and concluded that pet ownership, particularly dog ownership, “is probably associated with” and “may have some causal role” in decreased cardiovascular disease risk. while not specifically reviewing animal-assisted activities, this endorsement by a major professional organization is noteworthy. differences between animal-assisted activities animals and service animals animal-assisted activities animals and their handlers are trained to provide specific human populations with appropriate contact with animals. they are usually personal pets of the handlers and accompany their handlers to the sites they visit, although animal-assisted activities animals may also reside at a facility. animal-assisted activities animals must meet specific criteria for health, grooming, and behavior, and their access can be restricted at the discretion of the facility. animal-assisted activ- ities animals are not service animals. federal law, which protects the rights of qualified persons with disabilities in terms of service animals, has no provision for animal-assisted activities animals. guidance (animal-assisted activities) i. overview of management of an animal-assisted activities program within a healthcare facility. a. facilities should develop a written policy for animal- assisted activities. b. an animal-assisted activities visit liaison should be desig- nated to provide support and facilitate animal-assisted activities visits. often these visits are managed by the facility’s volunteer office or department. c. only dogs should be used (ie, exclude cats and other animals). cats should be excluded because they cannot be trained to reliably provide safe interactions with patients in the healthcare setting. d. animals and handlers should be formally trained and evaluated. facilities should consider use of certification by organizations that provide relevant formal training programs (eg, pet partners, therapy dogs incorporated, therapy dogs international). alternatively, facilities should designate responsibility for the program elements to an internal department (eg, volunteer department) to verify all elements (see section iii). e. animals and animal handlers should be screened prior to being accepted into a facility animal-assisted activities program (see section ii) f. the ipc should be consulted regarding which locations are appropriate for animals interacting with patients. g. all clinical staff should be educated about the animal- assisted activities program, its governance, and its policies. ii. training and management of animal-assisted activities handlers. facilities should do the following: a. ensure that animal-assisted activities handlers have been informed of the facility’s ipc and human resource policies (similar to volunteers) and have signed an agreement to comply with these policies. b. confirm that animal-assisted activities handlers have been offered all immunizations recommended for healthcare providers (hcp) within that facility (eg, measles, mumps, and rubella, varicella, pertussis, influenza). if immunization is required of hcp, it should be required for animal-assisted activities handlers. c. require the animal-assisted activities handler to escort the animal to the destination as arranged by the facility’s animal- assisted activities liaison and following hospital policy. d. instruct the animal-assisted activities handler to restrict contact of his or her animal to the patient(s) being visited and to avoid casual contact of their animal with other patients, staff or the public. e. limit visits to animal per handler. f. require that every animal-assisted activities handler parti- cipate in a formal training program and provide a certifi- cate confirming the training, which includes modules on the following: . zoonotic diseases . training on standard precautions including hand hygiene before and after patient contact . proper cleaning and disinfection of surfaces contaminated by animal waste (urine or feces) . proper disposal of animal waste . visual inspection for ectoparasites . reading of an animal’s body language to identify signs of physical discomfort, stress, fear, or aggression . identification of appropriate contacts in the event of an accident or injury infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core table . review of selected references on animal-assisted activities author, year, (ref. no.) type methodology findings abate sv, ( ) hospitalized heart- failure patients subjects were provided the opportunity to participate in canine-assisted ambulation (walking with a therapy dog). case subjects were compared with a historical population of controls. distance ambulated increased from . steps in a randomly selected, stratified historical sample to . in the canine-assisted ambulation study sample (p < . ). subjects unanimously agreed that they enjoyed canine-assisted ambulation and would like to participate in canine- assisted ambulation again. banks mr, ( ) long-term care randomized clinical trial, three groups of patients (no animal-assisted therapy; animal-assisted therapy once/week; animal-assisted therapy x/week); pre-post assessment residents volunteering for the study had a strong life-history of emotional intimacy with pets. aaa significantly reduced loneliness scores in comparison with the no animal-assisted therapy group. barak y, ( ) psychiatric ward randomized clinical trial of patients, with and without animal-assisted therapy improvement was noted in both groups compared with baseline scores and were significantly more positive for the aaa group on both total social adaptive functioning evaluation score and on the social functions subscale. barker sb, ( ) fear in electroconvulsive therapy (ect) patients were assigned on alternate days to a -min animal-assisted therapy session (intervention), or -min session with magazines (control) animal-assisted therapy reduced fear and anxiety but had no demonstrated effect on depression. barker sb, ( ) psychiatric patients self-reported, pre- and post-treatment crossover study that compared the effects of a single animal-assisted therapy session with those of a single regularly scheduled therapeutic recreation session. reductions in anxiety scores were found after the animal-assisted therapy session for patients with psychotic disorders, mood disorders, and other disorders. no significant differences found in reduction of anxiety. beck ce, ( ) outpatient veterans animal-assisted therapy on warriors in transition (n = ) attending an occupational therapy life skills program; pre-test, post-test nonrandomized control group study differences were not found between the groups on most measures; subjective reports of satisfaction with aaa. brodie sj, ( ) review potential benefits of pet therapy are considerable and nurses may assume an active role in advocating ward pet or pet-visiting schemes. chu ci, ( ) taiwanese inpatients with schizophrenia participants were randomly assigned to either a weekly animal-assisted activities program for mo (treatment) or no animal contact (control). the treatment group showed significant improvement on all measures except for social support and negative psychiatric symptoms. cole km, ( ) hospitalized heart- failure patients -group randomized repeated-measures experimental design was used in adults: group received a -minute visit from a volunteer with a therapy dog; group , a -min visit from a volunteer; and the control group, usual care. animal-assisted therapy improved cardiopulmonary pressures, neurohormone levels, and anxiety in patients hospitalized with heart failure. edwards ne, ( ) alzheimer’s disease evaluated effects of fish aquariums on nutritional intake in individuals with alzheimer’s disease in patients. nutritional intake increased significantly when the aquariums were introduced. shea expert guidance: animals in healthcare facilities downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core table . continued author, year, (ref. no.) type methodology findings edwards ne, ( ) aquaria in long-term care dementia pre-post test design— units, individuals with dementia and professional staff. residents’ behaviors improved along four domains: uncooperative, irrational, sleep, and inappropriate behaviors. jorgenson j, ( ) review benefits of the animal-human bond may include decreased blood pressure, heart rates, and stress levels, as well as increases in emotional well-being and social interaction. kamioka h, ( ) review of randomized controlled trials from to october , ; / studies met criteria for analysis randomized clinical trials relatively low quality and heterogeneity precluded meta-analysis. in a study environment limited to people who like animals, animal-assisted therapy may be an effective treatment for mental and behavioral disorders. levine gn, ( ) american heart association scientific statement review of studies pet (particularly dogs) ownership may have some causal role in reducing cardiovascular disease risk. marcus da ( ) literature review and rationale review of studies dog therapy visits reduced pain and pain-related symptoms. moretti f, ( ) nursing home patients with dementia, depression and psychosis. mini-mental state examination (mmse) and geriatric depression scale (gds) administered to animal-assisted activities patients and controls before and after a -week pet therapy intervention. improved depressive symptoms and cognitive function in residents of long-term care facilities with mental illness. nepps p, ( ) community hospital mental health unit patients on mental health unit of a community hospital with an existing, complementary animal-assisted activities program. half of the patients participated in a -h session of animal- assisted activities and comparison group in a -h stress management program. significant decreases (p < . ) in depression, anxiety, pain, and pulse after animal-assisted activities program, compared to those in the more traditional stress management group. nordgren l, ( ) dementia patients -month study of residents of swedish nursing homes with dementia ( in the intervention group; in the control group). assessment of the effects of a dog-assisted intervention on behavioral and psychological symptoms. the intervention comprised ten sessions ( – min, – × /week). some positive tendencies were observed. dog-assisted intervention may provide an alternative or a complement to pharmacological treatments to reduce behavioral symptoms in people with dementia, but its value and place in care require further evaluation. sobo ej, ( ) pediatric hospital pre-post mixed-methods survey in pediatric hospital ( patients) pet visitation reduced perceived pain. swall a, ( ) alzheimer’s disease video recorded sessions were conducted for each visit of the dog and its handler to a person with alzheimer’s disease. time spent with the dog shows the person recounting memories and feelings, and enables an opportunity to reach the person on a cognitive level. willis da, ( ) review animals can promote feelings of self- worth, help offset loneliness, reduce anxiety, provide contact, comfort, security, and the feeling of being needed. infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core g. require that a handler use particular care in directing the visit to prevent patients from touching the animal in inappropriate body sites (eg, mouth, nose, perianal region) or handling the animal in a manner that might increase the likelihood of frightening or harming the animal or the animal accidentally or intentionally harming the patient. h. restrict visiting sessions to a maximum of hour to reduce the risk of adverse events associated with animal fatigue. . handlers must observe the animal for signs of fatigue, stress, thirst, overheating, or urges to urinate or defecate. a. if taking a short break (or taking the animal outside to relieve it) does not ease the animal’s signs of discomfort, then the session should be terminated for that day. . handlers must comply with facility-defined restrictions for patient visits and be familiar with facility-specific signage regarding restricted areas or rooms. i. require that all animal handlers observe standard occupa- tional health practices. specifically, they should self-screen for symptoms of communicable disease and refrain from providing animal-assisted activities services while ill. such symptoms include, but are not limited to the following: . new or worsening respiratory symptoms (ie, cough, sneezing, nasal discharge) . fever (temperature > °c) . diarrhea or vomiting . conjunctivitis . rash or non-intact skin on face or hands j. require that handlers keep control of the animal at all times while on the premises, including the following: . keeping a dog leashed at all times unless transported within the facility by a carrier (as may be the case with smaller breeds). . refraining from using cell phones or participating in other activities that may divert his/her attention away from the animal. k. require all handlers to manage their animal as follows: . approach patients from the side that is free of any invasive devices (eg, intravenous catheters) and prevent the animal from having contact with any catheter insertion sites, medical devices, breaks in the skin, bandage materials, or other compromised body site. . before entering an elevator with an animal, ask the other passengers for permission, and do not enter if any passenger expresses reluctance or appears apprehensive. . require that everyone who wishes to touch the animal practice hand hygiene before and after contact. . do not permit a patient to eat or drink while interacting with the animal. . restrict the animal from patient lavatories. . in the case of an animal’s urinary or fecal accident, immediately terminate the visit and take appropriate measures to prevent recurrence during future visits. a. if submissive urination was involved, this will require suspending the animal’s visiting privileges, having the handler address the underlying cause, and then formally reevaluating the animal’s suitability before visiting privileges are restored. b. if repeated incidents of this nature occur, permanently withdraw the animal’s visiting privileges. c. in the case of vomiting or diarrhea, terminate the visit immediately and withdraw the animal from visitation for a minimum of week. . report any scratches, bites, or any other inappropriate animal behavior to healthcare staff immediately so that wounds can be cleaned and treated promptly. report any injuries to the animal-assisted activities liaison as soon as possible and to public health or animal control authorities, as required by local laws. a. the visit should be immediately terminated after any bite or scratch. b. in the case of bites, intentional scratches, or other serious, inappropriate behavior, permanently withdraw the animal’s visiting privileges. c. in the case of accidental scratches, consider the circum- stances that contributed to the injury and take appropriate measures to prevent similar injuries from occurring in the future. if measures cannot be taken to reduce the risk of recurrence, then visitation privileges should be withdrawn. d. if it is determined that the handler’s behavior was instrumental in the incident, then the handler’s visitation privileges should be terminated until the animal-assisted activities program manager has addressed the situation. e. report any inappropriate patient behavior (eg, inappropriate handling, refusal to follow instructions) to the animal visit liaison. l. facilities should maintain a log of all animal-assisted activities visits that includes rooms and persons visited for potential contact tracing. iii. requirements of acceptable animals for animal-assisted activities programs a. allow only domestic companion dogs to serve as animal- assisted activities animals. cats are not included in the recommendation due to concerns for increased potential allergenicity, potential increased risk of bites and scratches, and lack of data demonstrating advantages over dogs. . allow only adult dogs (ie, dogs of at least year but ideally at least years of age, the age of social maturity). . deny the entry of dogs directly from an animal shelter or similar facility. . require that dogs be in a permanent home for at least months prior to enrolling in the program. . admit a dog only if it is a member of a formal animal- assisted activities program and is present exclusively for the purposes of animal-assisted activities. shea expert guidance: animals in healthcare facilities downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core b. require that every dog pass a temperament evaluation specifically designed to evaluate it under conditions that might be encountered when in the healthcare facility. such an evaluation should be performed by a designated evaluator. . typically, this evaluation will assess, among other factors, reactions toward strangers, loud and/or novel stimuli, angry voices and potentially threatening gestures, being crowded, being patted in a vigorous or clumsy manner, reaction to a restraining hug, interactions with other animals, and the ability to obey handler’s commands. c. require all evaluators (either at facility or at the formal certification program) to successfully complete a course or certification process in evaluating temperament and to have experience in assessing animal behavior and level of training. . require all evaluators to have experience with animal visiting programs or, at the very least, appreciate the types of challenges that animals may encounter in the healthcare environment (eg, startling noises, crowding, rough handling). . if several animals need to be evaluated for behaviors other than reactions to other animals, require that the tempera- ment evaluator assess each animal separately, rather than assessing several animals simultaneously. d. recommend that animal-handler teams be observed by an animal-assisted activities program liaison at least once in a healthcare setting before being granted final approval to visit. e. recommend that each animal be reevaluated at least every years. f. require that any animal be formally reevaluated before returning to animal-assisted activities after an absence of > months. g. require that a handler suspend visits and have his or her animal formally reevaluated whenever he or she notices or is apprised (either directly or through the animal visit liaison) that the animal has demonstrated any of the following: . a negative behavioral change since the time it was last temperament tested . aggressive behavior outside the healthcare setting . fearful behavior during visitations . loss of sight or hearing and, consequently, an overt inclination to startle and react in an adverse manner h. health screening of animals . basic requirements for all animals a. require that dogs be vaccinated against rabies as dictated by local laws and vaccine label recommendations. serologic testing for rabies antibody concentration should not be used as a substitute for appropriate vaccination. b. exclude animals with known or suspected communicable diseases. c. animals with other concerning medical conditions should be excluded from visitation until clinically normal (or the condition is managed such that the veterinarian feels that it poses no increased risk to patients) and have received a written veterinary health clearance. examples include episodes of vomiting or diarrhea; urinary or fecal incon- tinence; episodes of sneezing or coughing of unknown or suspected infectious origin; animals currently on treatment with non-topical antimicrobials or with any immuno- suppressive medications; infestation by fleas, ticks, or other ectoparasites; open wounds; ear infections; skin infections or “hot spots” (ie, superficial folliculitis or pyoderma); and orthopedic or other conditions that, in the opinion of the animal’s veterinarian, could result in pain or distress to the animal during handling and/or when maneuvering within the facility. d. exclude animals demonstrating signs of heat (estrus) during this time period. . scheduled health screening of animal-assisted activities animals i. require that every animal receive a health evaluation by a licensed veterinarian at least once (optimally, twice) per year. . defer to the animal’s veterinarian regarding an appropriate flea, tick, and enteric parasite control program, which should be designed to take into account the risks of the animal acquiring these parasites specific to its geographic location and living conditions. . routine screening for specific, potentially zoonotic micro- organisms, including group a streptococci, clostridium difficile, vre, and mrsa, is not recommended. ii. special testing may be indicated in situations where the animal has physically interacted with a known human carrier, either in the hospital or in the community, or when epidemiologic evidence suggests that the animal might be involved in transmission. testing should be performed by the animal’s veterinarian in conjunction with appropriate infection prevention and control and veterinary infectious disease personnel, if required. iii. special testing may be indicated if the animal-assisted activities animal is epidemiologically linked to an outbreak of infectious disease known to have zoonotic transmission potential. suspension of visitation pending results is recommended in these situations. . dietary guidelines for all animals a. exclude any animal that has been fed within the past days any raw or dehydrated (but otherwise raw) foods, chews, or treats of animal origin, excluding those that are high-pressure pasteurized or γ irradiated. iv. preparing animals for visits: . require that every handler do the following: i. brush or comb the animal’s hair coat before a visit to remove as much loose hair, dander, and other debris as possible. infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core ii. keep the animal’s nails short and free of sharp edges. iii. if the animal is malodorous or visibly soiled, bathe it with a mild, unscented (if possible), hypoallergenic shampoo and allow the animal’s coat to dry before leaving for the healthcare facility. iv. visually inspect the animal for fleas and ticks. v. clean the animal carrier. vi. maintain animal leashes, harnesses, and collars visibly clean and odor-free. vii. use only leashes that are non-retractable and . to m ( to feet) or less in length. viii. not use choke chains or prong collars, which may trap and injure patients’ fingers. ix. make an animal belonging to an animal-assisted activities program identifiable with a clean scarf, collar, harness or leash, tag or other special identifier readily recognizable by staff. x. provide a dog with an opportunity to urinate and defecate immediately before entering the healthcare facility. dispose of any feces according to the policy of the healthcare facility and practice hand hygiene immediately afterward. v. managing appropriate contact between animals and people during visits a. obtain oral or written consent from the patient or his or her agent for the visit and preferably from the attending physician as well. consider documenting consent in the patient’s medical record. b. the handler should notify caregiver (eg, nurse or physician) of the animal visitation. c. the handler should be required to obtain oral permission from other individuals in the room (or their agents) before entering for visitation. d. all visiting animals should be restricted from entering the following clinical areas at all times, in addition to non- clinical areas outlined below in service animals section v.e. .: . intensive care units; isolation rooms; neonatal and new- born nurseries; areas of patient treatment where the nature of the treatment (eg, resulting in pain for the patient) may cause the animal distress; and other areas identified specifically by the healthcare facility (eg, rooms of immunocompromised patients). e. require the handler to prevent the animal from coming into contact with sites of invasive devices, open or bandaged wounds, surgical incisions, or other breaches in the skin, or medical equipment. f. if the patient or agent requests that an animal be placed on the bed, require that the handler do the following: . check for visible soiling of bed linens first. . place a disposable, impermeable barrier between the animal and the bed; throw the barrier away after each animal visit. . if a disposable barrier is not available, a pillowcase, towel, or extra bed sheet can be used. place such an item in the laundry immediately after use and never use it for multiple patients. g. instruct the handler to discourage patients and hcp from shaking the animal’s paw. if the dog is trained to shake hands with a patient and this contact is allowed by facility, ensure that the patient performs hand hygiene before and after shaking the animal’s paw. h. require the handler to prevent the animal from licking patients and hcp. i. prohibit feeding of treats to animals by hcp; however, if the act is believed to have a significant therapeutic benefit for a particular patient, then require that the handler: . ensure that the animal has been trained to take treats gently. . provide the patient with appropriate treats to give, avoiding unsterilized bones, rawhides and pig ears, and other dehydrated and unsterilized foods or chews of animal origin. . ensure that the patient practices hand hygiene before and after presenting the treat to the animal. . instruct the patient to present the treat with a flattened palm. vi. contact tracing a. the facility should develop a system of contact tracing that at a minimum requires animal handlers to sign in when visiting and ideally provides a permanent record of areas and/or room numbers where the animal has interacted with patients. vii. environmental cleaning a. practice routine cleaning and disinfection of environmen- tal surfaces after visits. clean and disinfect all areas (eg, floors, chairs) with an epa-registered hospital disinfectant. b. it is recommended that clean additional bed sheet be used to cover the bed if the animal has contact with surface of the bed, and this should be removed and laundered after the animal visit. if a separate sheet is not used, replace any bedding that might be contaminated. service animals background the americans with disabilities act (ada) is a us federal law that was passed in and has been subsequently updated. this law established certain legal rights for persons with service animals and defined the minimum access required by law. under the ada, “service animals” are defined as “dogs that are individually trained to do work or perform tasks for people with disabilities.” the ada provides a limited exception for miniature horses if these animals otherwise satisfy the defini- tion of a “service animal,” are housebroken, and do not create safety concerns. legal protection extends only to individuals who are disabled, as defined under the ada, not all patients with medical or psychological conditions. while a full exploration of what constitutes a “disability” is beyond the scope of this review, disability is generally defined by the shea expert guidance: animals in healthcare facilities downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core statute as ( ) a physical or mental impairment that sub- stantially limits one or more major life activities, ( ) a record of such an impairment, or ( ) being regarded as having such an impairment. guidance provided by the department of justice makes clear that service animals under the ada are “working ani- mals” and not pets, and they are trained to perform specific duties or tasks. if the individual has a “disability” as defined by the statute, service animals may include “alert” animals (ie, an animal trained to alert a person about to have a seizure and to take actions to protect that individual during the seizure) and animals trained to assist individuals with post-traumatic dis- tress syndrome (eg, calming that person during an anxiety attack); however, a dog whose sole function is comfort or emotional support is not considered a service dog. for more information, see the guidelines provided by the civil rights division of the us department of justice. federal guidelines limit the inquiries that staff may make when it is not obvious that the person is disabled and is using a service dog, as defined by the ada. staff may not require documentation about the person’s disability or the animal’s training but may ask: ( ) “is the dog a service animal required because of a disability?” and ( ) “what work or task is the dog trained to perform?” while restriction of access to service animals is permitted in situations where public health may be compromised, allergies or fear of dogs by staff or other patients generally are not acceptable reasons for denying access. the facility is required to make adjustments as needed to accommodate the animal. guidance i. each healthcare facility should have a policy regarding the admittance of service animals into the facility. a. the policy allowing service animals into the facility should be compliant with the federal americans with disabilities act (ada), any other applicable state and local regulations (note that federal law pre-empts more restrictive state or local regulations). , b. a policy regarding the entrance of service animals into the facility should include the following information: . a clear definition of “service animals” that should be consistent with the ada (see background of section iii for definitions). the facility is not required to permit animals in training to become service animals to enter the facility, but may choose to do so, reserving the right to exclude such animals at its discretion. . a statement that only dogs and miniature horses are recognized as service animals under federal law. . a statement that service animals are not pets and should not be approached, bothered, or petted. . a statement that the care of the service animal is the responsibility of the patient or his or her designated visitor (ie, it is not the responsibility of the healthcare facility’s personnel). if the patient is unable to arrange for the care of the service animal while in the facility, the animal should not be permitted to remain. . notification of the ipc that an inpatient has a service animal, followed by discussion with the patient to make sure the service animal complies with institutional policies. . a requirement that service animals be housebroken. ii. persons with disabilities may be requested but not required to have their service animal wear an identification tag (eg, collar, tag, etc.) that identifies them as a service animal to aid hcp in distinguishing service animals from pets. iii. situations sometimes arise in which a patient or visitor claims that a dog is a service animal (and the animal may be wearing a vest or other item identifying it as a service animal), but the animal’s behavior suggests that the animals is not a service animal (eg, the animal appears undisciplined, repeatedly approaches other visitors or patients for attention, does not display any behavior that is assisting its master, etc.). healthcare providers or staff may ask the patient to describe what work/tasks the dog performs for the patient, but may not ask for a “certification” or “papers.” there are no formal certifica- tion or registration programs for service animals and certificates and paperwork can be readily purchased for any pet from various ‘agencies.’ the facility’s policy should note that the term “service animal,” as defined under the ada, does not include dogs used for the provision of emotional support, well-being, comfort, or companionship. it may be helpful to quote directly from the ada regulations that make this distinction. iv. situations in which a service animal may be excluded from the healthcare facility include the following: a. the animal exhibits aggressive behavior such as snarling, biting, scratching, or teeth baring. b. the animal is excessively noisy (eg, howling, crying, or whining). c. the animal is unable to properly contain bodily excretions (eg, the animal is not housebroken, or has vomiting or diarrhea). d. if the facility’s personnel reasonably believes that a service animal is infectious or ill (see animal-assisted activities section iii.h. .b and c for examples), the animal should not be allowed to remain with the person with a disability until the animal is evaluated by a veterinarian and he/she provides written certification, acceptable to the healthcare facility, that the service animal does not pose an increased risk to patients or staff. e. the policy should include a list of locations from which service animals are prohibited and reasons for that exclusion. . where exclusion is based solely on risk to the service animal, the patient should be consulted. . when the service animal is restricted from accompanying the patient, reasonable accommodation should be made for the person with disability to function without the infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core service animal. areas from which service animals should be prohibited include the following: i. invasive procedure areas where sterility is required, including but not limited to the operating rooms, recovery rooms, cardiac catheterization suites, and endoscopy suites. ii. patient units where a patient is immunocompromised or deemed at particularly high risk for infection, or in isolation for respiratory (droplet or airborne) contact, or compro- mised host precautions, unless in a particular circumstance a service animal does not pose a direct threat and the presence of the service animal would not require a fundamental alteration in the hospitals’ policies, practices, or procedures. iii. food and medication preparation areas where appropriate hygiene is required, including but not limited to kitchen, infant formula preparation room, and central and satellite pharmacies. iv. areas where the service animal or equipment may be harmed by exposure (eg, metal is not allowed in a magnetic resonance imaging (mri) room, and a dog may have metal on a collar or in a surgical implant), after consultation with the patient or his/her authorized representative. when there is potential harm to the service animal (eg, animal present in room during radiation therapy), the patient should be advised of the potential harm and assumes full responsibility for any harm to the service animal. f. legal counsel should be consulted prior to exclusion of a service animal from a healthcare facility. g. any consideration of restricting or removing a service animal should be done with careful discussion with the patient (and/or his or her designee) to achieve consensus and provide an understanding of the concerns. v. the policy should include the following regarding the health of the service animal: a. the person with a disability (or his or her designee) is responsible for ensuring the health and care of the service animal. b. visiting or residing in a healthcare facility likely increases the risk of the animal acquiring certain pathogens. the healthcare facility assumes no liability for costs associated with a hospital-associated infection in the service animal. vi. the policy should address a service animal’s accompany- ing a healthcare facility visitor to a patient room and should include the following: a. persons with disabilities who are accompanied by service animals are allowed to visit patients as long as visitation occurs in accordance with the facility’s service animal policy and the facility’s “visiting hours and regulations.” b. service animals are not allowed to visit other patients’ rooms, the dining rooms, or other public areas of the facility unless accompanied by the person with a disability. c. when a person with a disability visits a patient’s room, he or she should check with the patient’s primary care nurse before visiting to assure that no patient in the room has allergies to the service animal or bears other significant medical risks that would contraindicate being near an animal. if another patient in the room has an allergy, other significant medical risk from exposure to an animal, or is fearful of the animal, other arrangements for visiting must be made (eg, visit in day room or waiting room). vii. the policy should address the following for a service animals belonging to patients: a. when patients with a service animal are assigned to a semi- private room, the roommate must be screened for clinically significant allergies to the service animal and, if such a condition is present, either the patient with the disability or the patient with animal allergies must be moved to another room. similarly, the patient or roommate must be moved if the roommate is fearful or otherwise disturbed by the presence of the animal. b. ipc should be notified when patients are admitted with service animals. c. the patient must be able to make arrangements to have the service animal fed, exercised, and toileted, without the involvement of hcp. viii. the policy should specifically address the use of a miniature horse trained to do work or perform tasks for a person with a disability. miniature horses generally range in height between inches and inches measured to the shoulders and generally weigh between and pounds. factors used to assess whether a miniature horse should be permitted in the healthcare facility include the following: a. whether the miniature horse is housebroken. b. whether the miniature horse is under the owner’s control. c. whether the facility can accommodate the miniature horse’s type, size, and weight. d. whether the miniature horse’s presence will not compro- mise legitimate safety requirements necessary for safe operation of the facility. e. the policy should clearly state who is assigned to enforce the policy (eg, legal). research animals background health-science centers are dedicated to advancing human health through basic as well as clinical and translational research. biomedical research often requires the application of sophisticated equipment and clinical techniques for research animals. because of logistics and expense, some equipment items and facilities may not be able to be dedicated solely for animal use; thus, research animals may need to be studied in human healthcare institutions using equipment and facilities that are also used for humans. similarly, on occasion, zoos or veterinary facilities may appeal for use of human healthcare facilities to diagnose or treat sick or injured animals. to accommodate these situations, when applicable, acute care shea expert guidance: animals in healthcare facilities downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core hospitals should have comprehensive policies and procedures in place to ensure patient and public safety while enabling safe, effective, and efficient evaluation and treatment of animals. as healthcare facilities develop infection prevention policies and procedures to evaluate and treat research animals, they should focus on factors: ( ) animals can serve as a reservoir and vehicle for potentially infectious pathogens, and ( ) human safety must take priority over research project goals. our focus is on transmission of infectious agents (see below); however, it should be noted that some animal species may pose additional threat, such as physical injury from large animals or envenomation. potential pathogens can be transmitted from research animals-to-humans. accredited healthcare research centers expend great effort to ensure research animal well-being and to minimize the likelihood that research animals harbor human pathogens. however, risk cannot be eliminated because many potential pathogens are part of the normal microbiota of animals. this brief guidance statement is not meant to catalog all of the potential infectious agents that can be transmitted from animals to humans. a few examples are noted below to illustrate the range of pathogens and routes of inoculation. . direct inoculation via percutaneous or mucosal membrane exposure a large number of pathogens can be carried in the blood and body fluids of research and veterinary animals and have on occasion been spread to laboratory workers or healthcare providers. examples include streptobacillus moniliformis (rat bite fever) resulting from the bite or scratch of laboratory rodents; herpes b virus encephalitis, transmitted by the bite of non-human primates; skin and soft tissue infection due to pasteurella multocida from cat bites and scratches and dog bites; and infection due to lymphocytic choriomeningitis virus, associated with expo- sures to laboratory rodents. . inhalation coxiella burnetii (q fever) and chlamydophila psittaci (psittacosis) are examples of pathogens that have been spread from laboratory animals-to-humans. , . direct contact zoophilic dermatophytes (microsporum canis, trichophyton mentagrophytes) may potentially be spread from infected mammals to humans. similarly, mrsa has been noted to colonize various domestic animal species. . fecal–oral a large number of pathogens may be carried subclinically in the gastrointestinal tracts of laboratory animals and can potentially be transmitted via the fecal–oral route. examples include salmonella ssp. (many animal species), campylobacter ssp. (mammals, birds, reptiles) and cryptosporidium ssp. (mammals, reptiles, primates). . indirect transmission via vectors occasionally, laboratory animals may harbor ectoparasites (eg, fleas), and these may serve as vectors for transmission of various pathogens to human laboratory personnel or hcp. to minimize the risk of transmission of pathogens to humans, institutions should formulate thorough procedures to safely conduct diagnostic and therapeutic procedures on research animals and animals from veterinary or zoologic sources. guidance i. review and approval a. before any research animal is evaluated in a human healthcare facility, the principal investigator should submit a detailed protocol that is reviewed and approved by the facility’s responsible individuals or committees including the following: . iacuc . radiation safety committee (if procedures utilize radiation or radioisotopes), infection prevention and control depart- ment, and the involved clinical departments (radiology, surgical services, etc.). b. external advice should be sought as necessary to ensure that there is adequate expertise to identify risks and develop preventive measures. c. the review and approval process should be supervised and monitored by a responsible entity, such as the institutional comparative medicine department or infection control department. in some circumstances, animals with active or uncontrolled infections may need to be specifically excluded from entering the facility (eg, open/draining wounds, diarrheal illness). . in addition to approving proposed procedures involving animals, the detailed protocol should address all relevant issues, including the following: a. when the procedure may be performed b. where the procedure is to be performed c. what personnel will be involved d. what personal protective equipment is required e. what cleaning and disinfection practices will be required f. what route(s) will be used to transport animals to and from the clinical area g. who is responsible for transporting the animal to the procedure area h. who is responsible for care and maintenance of the animal ii. scheduling a. after a protocol is approved, the investigator should work with the appropriate clinical area to schedule procedures to minimize the potential for animal contact with patients or the public. b. procedures on animals should be scheduled after normal clinical hours (ie, nights, weekends, and holidays) at a time when facilities and equipment are not being utilized for patient care. infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core c. the researcher must remain sensitive to the vagaries of clinical practice and must understand that clinical situations may arise that preclude the use of facilities for research animals even though the animal procedure had been scheduled. d. effective communication between the researcher and the clinical area manager is crucial. iii. transportation a. animals must be transported to and from clinical areas in an enclosed, escape-proof container that is opaque or concealed. if the animal is too large for a carrier (eg, pigs), it should be anesthetized prior to entry to the healthcare facility, restrained, and covered by a blanket. b. transportation routes should be utilized that minimize the potential for contact with patients or the public. c. service elevators should be used whenever possible. d. animals and patients or patient-care items should not be transported on the same elevator. iv. procedures in patient care areas a. animals should be prepared prior to transport as indicated for the procedure (eg, hair removal, skin preparation, bladder catheterization, intravenous access). b. whenever possible, procedures should be done in the housing area or otherwise away from human clinical areas. c. all mobile equipment and materials not needed for the animal procedure should be removed from the procedure room. d. consider covering the examination table with leak-proof plastic sheeting that is lined with absorbent material. e. doors to the procedure room should be closed, and a “do not enter” sign should be posted. f. appropriate personal protective equipment should be utilized by personnel. v. equipment a. use of disposable equipment is desirable. b. when using equipment that is also used on patients, only equipment that has an established protocol for proper and effective cleaning and can be effectively disinfected or sterilized (as appropriate) should be used. c. medical or surgical instruments, especially those invasive instruments that are difficult to clean (eg, endoscopes) that are used on animals should be reserved for future use only on animals. d. only disposable or dedicated equipment should be used if there is any chance such equipment may be contaminated with prions (eg, bovine spongiform encephalopathy or scrapie). vi. cleanup/waste disposal a. at the conclusion of the procedure, the room must be thoroughly cleaned with an epa registered disinfectant that is appropriate for the pathogen risks posed by the animals. b. patients are not allowed entry until the room has been cleaned and disinfected. c. if appropriate, a portable hepa unit should be placed in the room and run until the next work day to reduce airborne particulate allergens. d. all waste generated during the study should be considered potentially biohazardous and be disposed as regulated waste. vii. veterinary procedures a. whenever possible, animals should be treated in facilities specialized for animal care; however, the expense of specialized equipment may preclude use solely for animals and, on occasion, veterinary facilities or zoological institutions may wish to utilize human healthcare equipment or facilities. b. the practices and procedures noted above should be employed to ensure human safety and animal well-being. viii. zoo animals a. special care needs to be taken in the transport and care of zoo animals that are venomous (eg, venomous snakes), large (eg, elephant), or carnivorous (eg, tigers, lions). b. zoo animals must be accompanied by and contained at all times by trained staff. c. contact of animals by hcp not affiliated with the research or clinical activity should be prohibited. personal pet visitation background for the purposes of this document, ‘pet’ refers to a ‘personal pet,’ namely a domestic animal that is owned by an individual patient that is not a service animal nor an animal used for animal-assisted activities. visitation of patients by their own pets potentially offers benefits and challenges. the stronger bond with the pet could accentuate the positive impacts on the patient, and the pre-established relationship between pet and person could reduce the risk of adverse events such as bites and scratches; however, pets and their owners typically do not undergo the same (or any) form of training and scrutiny as compared to animal-assisted activities teams. further, while visitation with pets can be restricted, in theory, to only the individual patient, in practice, this may not be the case, as pets could encounter various hcp, visitors, and patients during their time in the facility. therefore, it cannot necessarily be assumed that the implications of visitation of a personal pet are guaranteed to be restricted to an individual patient. while pets are less scrutinized and would not necessarily fulfill the requirements for animal-assisted activities visitation programs, the potentially strong human-animal bond and corresponding potential positive impact on the patient leads many facilities to permit this activity. guidance i. each healthcare facility should have a policy regarding the admittance of pet animals into the facility and an individual that oversees the program. ii. pets should, in general, be prohibited from entering the healthcare facility, including pets of hcp, patients, and visitors. exceptions can be considered when the healthcare team determines that visitation with a pet would be of benefit to the patient and can be performed with limited shea expert guidance: animals in healthcare facilities downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core risk to the patient, other patients, and healthcare facility as a whole. the patient or guardian of the pet should be informed of potential risks, which should be documented in the chart. situations where visitation with a pet might be considered include the following: a. visitation of a terminally ill patient b. visitation of a patient who has been hospitalized for a prolonged period of time c. visitation of a patient who has a close bond with the animal and where the healthcare team suspects that visitation could improve the patient’s physical or mental health iii. visitation by a pet is different than animal-associated activities or similarly structured activities. risks from visitation by patients’ pets may be increased for the following reasons: a. there is no formal training of the owner/designee, as with an animal-assisted activities handler(s). b. pets have not been temperament tested. c. pets do not typically undergo the same degree of health assessment or exclusion practices (eg, age) as compared to animals used in animal-assisted activities. iv. the degree of restriction should take into consideration the patient’s health and mental status, the patient’s prognosis, and factors relating to the animal (eg, age). v. healthcare facilities that permit a single pet visitation to a patient should have a written policy that includes the following: a. approval should be obtained from ipc, as well as the patient’s attending physician and nurse. approval for the visit should be included in the medical record, with details about the animal, as well as the person responsible for the animal’s transport and care. b. visitation should be restricted to dogs. animals should be at least year of age and housebroken. visitation by younger animals could be considered on a case-by-case basis considering the age of the animal, the species, and potential benefits and risks to the patient. c. written information should be provided to the animal’s owner/designee. this document must specify the following: . the approved date, time, and location of visitation. . the maximum duration of visitation of one hour. . acceptable and unacceptable practices of the visiting animal are similar to an animal-assisted activities visit. . pre-visitation requirements of the owner/designee are similar to an animal-assisted activities visit. . the owner or guardian of the animal is responsible to supervise the animal at all times, prevent contact of other individuals with the animal, promptly clean up any fecal or urine accidents that occur, supervise the visitation process, and report any events (eg, bite, scratch) to hcp. d. in general, visitation should not be permitted in the following situations: . patients on contact or droplet isolation . patients in an intensive care unit (icu) . patients whose cognitive status would result in an inability to safely interact with the animal, unless it can be certain that the patient will only be able to see, not touch, the animal. . visitation of patients that have undergone recent solid organ or stem cell transplant or who are significantly immunocompromised. . in some situations, these exclusions can be reconsidered by ipc and clinical personnel based on the risk to the patient, others in the healthcare facility or patient’s household, and the anticipated benefits to the patient from pet visitation. vi. an appropriate site for pet visitation should be selected a. visitation is best performed outside of the medical facility whenever possible, consistent with facility rules for leaving the facility under proper supervision. b. if outdoor visitation is not possible, visitation should be performed in a private room. c. if visitation must occur in a multi-bed room, explicit per- mission from the roommate (or roommate’s guardian) and the roommate’s physician must be obtained prior to arrival arriving. d. pets should not be fed, given treats, or provided with water during visitation. e. animals should be taken directly to the site of visitation, avoiding areas of heavy traffic. f. the person transporting the animal should prevent the animal from coming into contact with other patients or hcp. g. the pet should be transported in a carrier whenever possible, or on a leash that is < m ( ft) in length. h. animals must not be allowed to roam freely in the visitation area. i. a pet that is disruptive or exhibiting fearful or aggressive behavior (eg, barking, snarling, biting) should be immedi- ately removed. the program coordinator must be notified. j. the pet should not have the ability to interfere with medical measures (ie, not be able to damage iv tubing). vii. the patient must perform hand hygiene immediately before and after contact with the animal. it is recom- mended that a clean additional bed sheet be used to cover the bed if the animal has contact with surface of the bed, and this should be removed and laundered after the animal visit. if a separate sheet is not used, replace any bedding that might be contaminated. viii. pets of hcp should not be brought to a healthcare facility unless part of a formal animal-assisted activities program or for approved visitation of a patient who is a family member. other uses of ahc background this guidance document has focused on the four major reasons for animal use in healthcare facilities (ie, animal-assisted infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core activities, service animals, animals for research, and pet visitation); however, animals may occasionally be used in healthcare facilities for other medical reasons, such as medic- inal leeches and larva debridement therapy, educational purposes (eg, zoo and farm animals), and decorative purposes (eg, aquariums). these topics are briefly reviewed and guidance recommendations provided. leeches leeches continue to be used in modern medicine in the management of acute problems related to vascular congestion in patients with reimplantation of digits and ears and in reconstruction using cutaneous or muscle flaps. – the most common leech used is hirudo medicinalis. the use of medic- inal leeches can increase the risk of wound infections. the most common pathogen is aeromonas hydrophila, – but infection with vibrio fluvialis has also been reported. the incidence of wound infection had been reported to be %. treatment of leeches with ciprofloxacin has been reported to eliminate carriage of aeromonas spp. systemic antibiotics administered to patients have been found to penetrate into leeches and to significantly reduce the rate of a. hydrophila isolation compared with controls (ie, % vs %). unused leeches should be maintained by pharmacy. used engorged leaches should be consider capable of transmitting bloodborne pathogens and should be disposed of as hazardous waste. aquariums a large number of bacterial infections may be acquired by trauma sustained in water or by injuries caused by water-dwelling animals. – the most important of these pathogens are a. hydrophila, edwardsiella tarda, erysipelothrix rhusiopathiae, mycobacterium marinum, vibrio cholerae non- o , vibrio parahaemolyticus, and vibrio vulnificus. infections with m. marinum can result from cleaning fish tanks. – one study reported a public aquarium to be the source of an outbreak of legionnaires’ disease. because fish tanks may harbor the aforementioned patho- gens, fish tanks generally should be excluded from healthcare facilities and both clinical and non-clinical areas; however, aquariums may be permitted if maintained by trained per- sonnel, use a closed system, and water pumps are designed to prevent aerosalization. larvae myiasis is the condition wherein a live vertebrate host is infested by fly larvae (maggots). healthcare-associated myiasis has been described as generally associated with warm weather, open, unscreened windows, foul-smelling wounds, draining body fluids, and depressed mental status. in urban and suburban regions of the united states, most cases of myiasis are caused by the relatively benign facultative green blowfly. in one prospective study, only % of the cases were hospital- acquired. researchers have reviewed the prevention and management of nosocomial myiasis. , larval debridement therapy has been used around the world to promoted wound healing. generally, larval debridement therapy has used the disinfected fly larvae of lucilia sericata in the treatment of wounds resistant to conventional therapy. , however, large controlled clinical trials assessing benefits and risks of this therapy have not been performed. zoo animals petting zoos and animal exhibits have been associated with multiple outbreaks. for this reason, in general, farm and other animals should be prohibited from healthcare facilities. guidance i. if medicinal leeches are used, they should be purchased from a medical supply vendor, maintained in pharmacy, and discarded as regulated medical waste after used (engorged). a. consider decolonizing leeches (ie, eliminate carriage of aeromonas) by feeding leeches on an appropriate anti- biotic or prophylactically treating the patient with an appropriate antibiotic. ii. fish tanks in hospitals should not be allowed due to the risks of infection from maintenance of the fish tank and the possibility of aerosol transmission of legionella spp. if a facility chooses to have an aquarium, it should be covered, not accessible to patients, maintained by a professional staff, and not placed in a clinical area or in an area with immunocompromised patients. protocols should be established for aquarium management, includ- ing measures to reduce contamination of the environment with aquarium water. because of the increased risks associated with reptiles (eg, aquatic turtles) and amphi- bians (eg, african dwarf frogs), aquatic reptiles should not be kept in aquariums in healthcare facilities. iii. if maggot debridement therapy is used, only appropriate decolonized flies or fly larvae should be purchased. maggots should be handled as biohazardous waste after being removed from a patient. iv. farm and zoo animals events should be not allowed in a healthcare facility or on healthcare facility property (eg, outside the facility). areas for future research as the role of ahc evolves, there is a need for research to establish evidence-based guidelines for their management. carefully conducted randomized controlled trials are needed to assess the benefits of animal-assisted activities in healthcare. shea expert guidance: animals in healthcare facilities downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core additionally, there is a need for the systematic evaluation of risks of animals in healthcare based on the category of use (eg, animal-assisted activities, service animal, research, and personal pet visitation). prospective tracking of adverse out- comes associated with ahc facilities will help to refine and clarify the approaches recommended in this guidance. in addition, publication of any outbreaks, clusters or infections attributable to the presence of ahc facilities should be encouraged. finally, prospective studies on optimal infection prevention practices for management of animals in healthcare are needed. acknowledgments the association for professionals in infection control and epidemiology (apic) endorses this paper. financial support: this study was supported in part by the shea research network. 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effects of a complementary intervention program on psycholo- gical and physiological variables. j evid based complementary altern med ; : – . . nordgren l, engström g. animal-assisted intervention in dementia: effects on quality of life. clin nurs res ; : – . . sobo ej, seid m, reyes gelhard l. parent-identified barriers to pediatric health care: a process-oriented model. health serv res ; : – . . swall a, ebbeskog b, lundh hagelin c, fagerberg i. can therapy dogs evoke awareness of one’s past and present life in persons with alzheimer’s disease? int j older people nurs ; may [epub ahead of print]. . willis da. animal therapy. rehabil nurs ; : – . infection control & hospital epidemiology may , vol. , no. downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://www.cambridge.org/core 	outline placeholder 	purpose 	background 	the role of animals in healthcare settings (ahc) 	risks of animals in healthcare 	table selected diseases transmitted by dogs stratified by transmission�route 	intended use 	society for healthcare epidemiology of america (shea) writing group 	key areas addressed 	table studies of pathogens and outbreaks associated with animals in healthcare�(ahc) 	guidance and recommendation format 	review of submitted policies and procedures healthcare facilities 	animal-assisted activities (animal-assisted or &#x c;pet therapy&#x d; programs) 	service animals 	table exclusion criteria cited by hospital policies related to animal-assisted activities 	research animals 	personal pet visitation 	table summary of responses from hospitals submitting policies and procedures on service animals 	survey of shea membership on animals in healthcare 	survey results 	table summary of policy requirements for personal pet visitation 	table allowable uses of animals in healthcare (ahc) facilities, stratified by major categories 	guidance statement 	animal-assisted activities 	background 	table areas of healthcare facility in which animals were prohibited (responses�&#x d;� ) 	table summary of animals in healthcare classification and selected recommendations 	differences between animal-assisted activities animals and service animals 	guidance (animal-assisted activities) 	table review of selected references on animal-assisted activities 	service animals 	background 	guidance 	research animals 	background 	guidance 	personal pet visitation 	background 	guidance 	other uses of ahc 	background 	leeches 	aquariums 	larvae 	zoo animals 	guidance 	areas for future research 	acknowledgments 	acknowledgements dogs and cats and miniature ponies, oh my! meet the therapy pets | the bmj skip to main content intended for healthcare professionals 	 subscribe 	 my account 	my email alerts 	 bma member login login 	 username * password * forgot your log in details? need to activate bma member log in log in via openathens log in via your institution edition: us 	uk 	south asia 	international our company toggle 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dogs and cats and miniature ponies, oh my! meet the therapy pets bmj ; doi: https://doi.org/ . /bmj.l (published december ) cite this as: bmj ; :l 	article 	related content 	metrics 	responses 	peer review 	 	matthew limb, freelance journalist 	london, uk 	limb{at}btinternet.com animal assisted interventions in healthcare settings take all sorts, finds matthew limb therapy pets are in demand these days—and not just at christmas. staff may be in short supply but animals seem to be increasingly popping up in caring roles in hospitals and other settings. dogs are the most common therapy pet. owners or handlers and their dogs are usually approved by a recognised organisation for so called “animal assisted interventions.” pets as therapy and therapet are two prominent visiting programmes in the uk. sometimes people just need a cuddle pets as therapy has registered volunteers with their “behaviourally assessed” animals—overwhelmingly dogs. candice hughes, a new yorker and retired foreign correspondent living in london, signed up with her bouncy, affable australian labradoodle named broadway. they passed the charity’s assessments for suitability, temperament, and handling control and work “as a team” at the royal free hospital. they regularly spend time with patients with dementia and on acute kidney care and some general wards. “if patients can, we take a walk up and down the hallway,” says hughes, who loves to hear their stories. visits can be emotionally charged and produce tender moments. “there is something about a dog. sometimes people just need a cuddle or a break in their routine,” she says. children often warm to dogs in hospital, especially if anxious before undergoing treatment, scans, or physiotherapy, says suzy emsden, a consultant paediatric intensivist. she takes her “laid back and emotionally intelligent” pug, alfie, to the royal manchester children’s hospital and other facilities. he will do what’s needed—sit quietly being stroked or submit to being dressed up or ferried around on a toy tractor. children who have raged against doing their physiotherapy suddenly mobilise to take him for … view full text log in log in using your username and password bma member log in if you have a subscription to the bmj, log in: username * password * forgot your log in details? 	 need to activate 	log in via institution 	log in via openathens log in through your institution subscribe from £ * subscribe and get access to all bmj articles, and much more. subscribe * for online subscription access this article for day for: £ / $ / € (excludes vat) you can download a pdf version for your personal record. buy this article 	tweet widget 	facebook like see other articles in issue article tools pdf response 	 respond to this article 	 print 	 alerts & updates article alerts please note: your email address is provided to the journal, which may use this information for marketing purposes. log in or register: username * password * register for alerts if you have registered for alerts, you should use your registered email address as your username 	 citation tools download this article to citation manager matthew limb freelance journalist limb m. dogs and cats and miniature ponies, oh my! meet the therapy pets bmj ; :l doi: . /bmj.l 	 	bibtex (win & mac)download 	endnote (tagged)download 	endnote (xml)download 	refworks tagged (win & mac)download 	ris (win only)download 	medlarsdownload help if you are unable to import citations, please contact technical support for your product directly (links go to external sites): 	endnote 	procite 	reference manager 	refworks 	zotero 	 request permissions 	author citation 	articles by matthew limb 	add article to bmj portfolio email to a friend forward this page thank you for your interest in spreading the word about the bmj. note: we only request your email address so that the person you are recommending the page to knows that you wanted them to see it, and that it is not junk mail. we do not capture 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	authors 	reviewers 	bma members 	readers 	subscribers 	advertisers and sponsors 	media 	recruiters explore bmj 	our company 	bmj careers 	bmj learning 	bmj masterclasses 	bmj journals 	bmj student 	academic edition of the bmj 	bmj best practice 	the bmj awards my account 	email alerts 	activate subscription information 	contact us 	complaints 	cookie settings 	cookie policy 	privacy policy 	website t&cs 	revenue sources 	highwire press 	sitemap copyright © bmj publishing group ltd     京icp备 号- canine rabies: a looming threat to public health animals , , - ; doi: . /ani animals issn - www.mdpi.com/journal/animals review canine rabies: a looming threat to public health sigfrido burgos-cáceres food and agriculture organization of the united nations, viale delle terme di caracalla, building c, room , rome, , italy; e-mail: sigfrido.burgos@fao.org; tel.: + - - - received: august ; in revised form: september / accepted: september / published: september simple summary: this review is guided by three questions: what is canine rabies? why is it a looming threat to public health? why should we care about canine rabies being a public health threat? it seeks to answer these questions and notes that canine rabies is viral zoonosis with dogs being the major vectors. the disease is a looming threat to public health because rabid dogs bite humans, resulting in thousands of deaths every year. we should care about this evolving situation because, in general, rabies is a neglected disease for which there are vaccines, preventive measures, post-exposure prophylaxis, and control protocols. abstract: rabies is an acute, fatal viral disease that infects domestic and wild animals and is transmissible to humans. worldwide, rabies kills over , people every year. the domestic dog plays a pivotal role in rabies transmission. domestic dogs are not only part of our daily lives but also of our immediate surroundings, and this is reflected in the rise in pet dog ownership in developed and developing countries. this is important given that more frequent exposures and interactions at the animal-human interface increases the likelihood of contracting zoonotic diseases of companion animals. despite existing vaccines and post-exposure prophylactic treatment, rabies remains a neglected disease that is poorly controlled throughout much of the developing world, particularly africa and asia, where most human rabies deaths occur. it is believed that with sustained international commitments, global elimination of rabies from domestic dog populations, the most dangerous vector to humans, is a realistic goal. keywords: canines; rabies; public health; zoonoses open access animals , . canine rabies rabies is an acute fatal viral illness of the central nervous system. it is also a viral zoonosis and dogs are the major vectors [ , ]. the rabies virus is a bullet-shaped, enveloped, rna virus, by nm, of the lyssavirus genus within the rhabdovirus family. the helical nucleocapsid (n) is composed of a single-stranded negative-sense rna genome and an rna-dependent rna polymerase enclosed in a matrix (m) protein covered by a lipid bilayer envelope containing knoblike glycoprotein (g) [ ]. transmission of rabies virus usually begins when infected saliva of a host (i.e., a rabid dog) is passed to an uninfected organism (i.e., a human being) [ ]. to date, the most common mode of rabies virus transmission is through the bite and virus-containing saliva of an infected host [ ]. other transmission routes exist. these include contamination of mucous membranes (i.e., eyes, nose, mouth), aerosol transmission, and corneal and organ transplantations. however, these alternative transmission routes have been rarely documented [ - ]. in animals, hyperexcitability, autonomic dysfunction, and aerophobia are characteristic of encephalitic rabies. the paralytic form is characterized by flaccid paralysis in the bitten limb, which ascends symmetrically or asymmetrically. in humans, the first symptoms of rabies include listlessness, general weakness, bodily discomfort, fever, pains, or headache. these symptoms may last for a couple of days. later, there may be a prickling or itching sensation at the site of bite, progressing within days to symptoms of cerebral dysfunction, agitation, anxiety, and confusion. as the disease progresses, the person may experience abnormal behavior, delirium, hallucinations, insomnia, and respiratory failure. once symptoms develop, the disease is often fatal. in fact, rabies remains one of the most ancient and deadly of human infectious diseases [ , , ]. the virus incubation period in dogs may vary from one week to several months and may be influenced by the site of infection and the virus dose and strain. diagnosis by clinical signs alone is inadequate since many rabid dogs develop dumb rabies which can easily be overlooked and others die without showing signs of rabies. rabies virus may be excreted in the saliva before clinical signs appear and may lead to infection of an unsuspecting and untreated bite victim. dogs may recover from clinical rabies and may then intermittently excrete virus in the saliva [ , ]. rabies virus has been isolated from the saliva a female dog (that had been inoculated with a rabies isolate from the saliva of an apparently healthy ethiopian dog developed rabies but later recovered without supportive treatment) collected at , , and days after recovery [ , ]. rabies is considered a fulminating disease given that once the first clinical signs appear, there is no effective treatment. however, a ray of hope emerged in with the report of a single patient recovering from rabies after aggressive, innovative treatment. regrettably, this case was not clearly reproduced and the identification of targets for antiviral treatment in cases of rabies infection remains a major challenge [ ]. post-exposure prophylaxis consists of prompt and thorough wound cleansing and immunization with modern cell culture vaccines, together with administration of rabies immunoglobulin to those individuals who have not previously received pre-exposure prophylaxis [ , ]. on this specific topic, it is worth noting that historical reviews on the treatments and prevention of human rabies from ancient times up to the present have been undertaken [ , ]. animals , . canine rabies in the context of emerging and reemerging diseases after years of vaccination, rabies is still both a neglected disease and reemerging zoonosis [ - ]. it is now widely acknowledged that emerging and reemerging zoonotic disease events have heightened worldwide public awareness of the multidimensional linkages between domestic and wild animals, livestock production, and global public health [ , ]. there are many factors contributing to the emergence, reemergence, and intensification of zoonotic diseases. these include economic factors (i.e., higher demand for animal foods, developing technologies, increased international travel, cross-border trade, novel agricultural, and industrial applications), social and cultural factors (i.e., food habits, religious practices, lack of adequate health care, changes in human behavior, and farming practices), human and animal demographical factors (i.e., ageing populations in developed countries, urbanization, population growth, availability of new hosts, and movement of animals into new landscapes), environmental factors (i.e., global climate change, lack of adequate sanitation, and land use practices that result in human contact with previously remote habitats) and evolutionary factors (i.e., microbial adaptations, enhanced infectiveness, and pathogen changes), to mention a few [ - ]. that most of the historical emerging diseases are intricately associated with very unique patterns of common determinants (i.e., demographic, economic, environmental, etc.) suggests that an increasingly complex modern world will probably provide increasing opportunities for disease emergence and reemergence. indeed, for centuries, emerging and remerging infections have remained among the principal challenges to human survival and a fundamental challenge to the existence and wellbeing of societies all around the world [ , ]. it would be wrong, however, to pin down diseases only to seemingly verifiable facts. even if capable of infecting a different host species, pathogens are usually, although not always, significantly less infectious to them. this is referred to as the species barrier, and it can be substantial, implying that much higher doses are required to infect the new host. for example, the dose of rabies virus from foxes required to infect dogs and cats has been shown experimentally to be up to a million times greater than that required to infect other foxes [ , ]. a significant anthropogenic-dependent variable is dog care, disease knowledge, and leisurely practices. to give one example, a study to assess the knowledge and perceptions of dog-associated zoonoses in brazos county, texas, usa, demonstrated that many of the people surveyed lacked knowledge about dog-associated zoonotic diseases, which could seriously impact their health and the health of their families. only percent of respondents stated that they would seek emergency treatment if they believed that they may have been exposed to rabies, and only percent of respondents were aware that exposure to rabies without treatment could lead to death [ ]. these anthropogenic-dependent variables are critically important given that exposures at the animal-human interface are a key risk factor in canine rabies. on this subject, researchers at the u.s. national center for injury prevention and control argue that the dog bite problem should be re-conceptualized as a preventable epidemic. they claim that breed-specific approaches to the control of dog bites do not necessarily address the issue that many breeds are involved in the problem (not only dog breeds perceived as aggressive) and that most of the factors contributing to dog bites are related to the level of responsibility exercised by dog owners. to this end, in an effort to prevent dog animals , bite-related deaths and injuries, recommendations advanced include stronger animal control laws, better resources for enforcement of these laws, better reporting of dog bites, and public education about responsible dog ownership and dog bite prevention [ , ]. in relation to public communication and education about disease prevention and control, an important development aiding to raise awareness on zoonotic diseases is fast communication technologies, leading to a growing number of independent health information brokers. for instance, internet search engines provide a wealth of information on rabies and other diseases, as well as incorporating features to detect onsets of seasonal flu epidemics―which not only matched official surveillance data but did so in advance. today there is a widening range of outlets discussing health and diseases, and the internet, it appears, is democratizing health information; but its unverifiable character facilitates misleading others and being misled, thus warranting caution [ , ]. . lifestyles, urbanization, and pet dog ownership a congeries of processes collectively labeled ‘modern globalization’ is impacting the way human beings conceptualize, deal, and interact with diseases [ , ]. one of these associated processes is urbanization. rising urbanization is increasing the presence of traditional pets in households [ , ]. many of these residences are in multi-building apartment complexes or condominiums where contact rates between people and dogs are increased, especially in playgrounds, leisure areas, and dog parks. dogs are not only part of our daily lives and our immediate surroundings, but also have become substitutes for childbearing and child care to the point that owners allow dogs access to all rooms in an apartment or a house [ ]. the rise in pet ownership is reflected in the amount of pet dogs in developed and developing nations. for example, the estimated pet dog population in the people’s republic of china is to million [ ], in france is million [ ], in taiwan is . million [ ], in the netherlands is million [ ], in the united kingdom is to million [ ], and in the united states is million [ ]. overall, according to one estimate, the current world population of domestic dogs may be as high as million, of which a substantial proportion is poorly supervised or free-roaming [ ]. . a looming threat to public health rabies remains a looming threat to public health in developing and transitioning countries, and the indigenous threat of rabies continues in developed countries because of wildlife reservoirs [ ]. both intergovernmental organizations and individual researchers estimate that rabies causes the deaths of over , persons every year, and this is known to be a conservative estimate. most countries do not have the capacity for laboratory confirmation of rabies cases, and most suspected rabies victims do not die in hospital, so rabies is underreported [ , ]. in addition to human death tolls and mounting healthcare costs related to rabies, there are numerous other linkages between diseases, health, socioeconomics, and international affairs that should also be considered [ , ]. because of the broad geographic spread of rabies in the world, the following subsections will focus on canine rabies in specific continents or regions. the purpose of this is to disaggregate the data and information into recognizable categories, and also to ease the exposition and explanation of content. animals , africa: african countries are considered to be at particular risks of rabies infections. in fact, the world health organization (who) notes that more than % of human deaths occur in africa and asia [ ]. rabies has been, and continues to be, a public health threat in angola [ , ], southern africa [ ], tanzania [ ], and zambia [ ], among other countries. here are a couple of examples: in south africa, canine rabies has commonly been associated with the eastern and southern border areas in mpumalanga province, and, within this province, the nkomazi district in the east has been most affected [ ], as well as in the limpopo province [ ]. frequent outbreak reports throughout the country are probably an indication of inadequacy in the control of the disease at local levels. moreover, the success and opportunism of rabies in southern africa is a reflection of the emergence and radiation of rabies in new host species and locales throughout the larger continent as a whole [ ]. in kenya, ever since rabies was first confirmed in , the disease has largely existed in varying degrees of occurrence with dogs being the principal reservoirs for rabies. over the years an enzootic pattern covering most parts of kenya emerged, thus posing threats to neighbors [ , ]. one of the most acute problems is that, for most african countries, rabies prevention and treatment are costly and the necessary resources often scarce or inadequate. controlling rabies in dogs, the main agents of spread, will therefore emerge as an important part of any rabies eradication program. australia: at the moment, australia is free of canine rabies. this is partly explained because all imported animals are subject to strict quarantine requirements, including vaccination for dogs and cats from all affected countries. it is believed that the country’s poorly controlled canine population, its indigenous fauna, and the casual australian lifestyle would make a rabies outbreak difficult to control. in the past, dogs played pivotal roles in rabies. three decades ago, in a survey of animal bites in canberra, out of a total of mammalian bites, percent were due to dogs and cats [ ]. in is interesting to note that until , australia had recorded only one case of travel-acquired rabies. later, in , an extreme case of long-incubation rabies was diagnosed in a -year-old girl of vietnamese origin in whom rabies developed after she had lived continuously in australia for almost five years [ , ]. while these cases are unusual, the evidence suggests that it can happen. europe: while rabies in domestic animals and wild carnivores has become extremely rare in western europe [ ], the world witnessed the reemergence of rabies in some regions of europe (central and eastern) that were previously designated rabies-free, which demonstrates the need for continual vigilance and the adoption of strict control measures for extended time periods. despite the significant advances that have been made during the th century in reducing the burden of rabies, especially in central and eastern europe, the disease remains endemic in many countries, largely as a result of financial limitations and a poor veterinary infrastructure [ , ]. for example, rabies has been endemic in lithuania for decades, with wildlife cases principally reported in red foxes and raccoons from to [ ]. later, in the same country, a study from to reported that cases of rabies among foxes and raccoons had increased significantly [ ]. in rabies situation reports, others have commented that an unfavorable situation remains mainly in the baltic and nearby southeastern countries [ ], especially in romania, bulgaria, and turkey [ ]. in view of this situation, a number of western european countries have voiced concerns on the threat of reintroduction of rabies virus. one of these is the united kingdom, where risks from rabies exist on several levels. based on assessments, scholars have positively commented on current uk government policy in light of a european call to harmonize rabies legislation across all europe [ ]. animals , eurasia: without question, rabies in eurasia is essentially a public health issue. human rabies of canine origin has continued unabated for centuries in eastern eurasia, despite the pasteur treatment and subsequent improvements of rabies post-exposure prophylaxis and novel biological products. in this sense, canine rabies, which is the main source of human contamination, remains practically uncontrolled. in these sub-regions three main rabies cycles are presently established: in dogs, in wild carnivores, and in insectivorous bats. because of the strong barrier that exists between species-adapted rabies viruses and various potential hosts, these cycles are quite independent [ , ]. for instance, in sanliurfa, turkey, a study was launched to determine the level of knowledge of rabies transmission and control among physicians practicing in healthcare centers. the study found that while . percent of the physicians correctly indicated that cats and dogs can transmit the disease, the fact that foxes also have a role in transmission was known by only . percent [ ]. the varying degrees of knowledge about common viral zoonoses reflect the need for continuous medical education at local, municipal, and provincial levels. also, based on the peculiar conditions of the region, the authors noted that to control rabies, the issue must be dealt with locally, through both economic and social means [ ]. in these regions, dogs are the major animal reservoirs, with wildlife maintaining recurrent cycles of infection as new viral etiological agents continue to emerge. because nearly all human rabies cases in eurasia are related directly to animal bites, primary disease prevention thus requires minimization of suspected exposures. also, pre-exposure vaccination should occur in selected population groups at high risk of occupational exposure. canine rabies elimination is the key towards ultimate reduction of disease burdens in eurasia [ ]. south america: between and , the largest urban rabies outbreak was reported in a colombian city (santa marta) caused by a number of rabid dogs. the human health response was unprecedented; but, despite the existence of efficient rabies vaccines, the control of the outbreak was achieved months after the first rabies case in dogs, and months after the initiation of the first mass vaccination of animals [ ]. another study was carried out on canine rabies in colombia to describe its tendency and explore the factors associated with its incidence. this study found that variables were associated with the presence of canine rabies: an urban population, immunization coverage, a lack of a cold chain for vaccines, a lack of participation in surveillance committees, the lack of an epidemiological map, the unavailability of a rabies diagnosis laboratory, the absence of trained human resources, the absence of a zoonosis center for observing dogs, comparative analysis between monthly and semester basis data, and the percentage of people displaced by internal violence [ ]. in brazil, a study was launched to investigate the evolutionary history of dog rabies virus in the country, and concluded that the movement of rabid dogs, along with human activities since the th century, promoted the introduction and expansion of dog rabies virus in brazil [ ]. in bolivia, the government issued a regulation for rabies control in owing to increases in the prevalence of dog and human rabies cases. in santa cruz de la sierra, bolivia, where dog rabies was endemic, an investigation on dog rabies vaccination coverage and risk factors associated with dogs being unvaccinated against rabies found that almost two-thirds of dogs were allowed to roam freely in the streets, parks, and yards throughout the day, with the majority of these dogs doing so unvaccinated [ ]. from a historical perspective, it is worth noting that dog rabies had never been recorded in south america before european colonization [ ], but today domestic dogs remain the most significant species for viral transmission, responsible for millions of suspect human exposures. animals , south asia: there are some recent assessments of the burden of human rabies in south asia [ - ]. for instance, in eastern bhutan, major outbreak of rabies in dogs and other domestic animals occurred between may and november . this disease event resulted in one human and domestic animal fatalities. it is believed that high densities and movements of free-roaming dogs might have been responsible for the rapid spread and persistence of the infection [ ]. later, in the first six months of , rabies reemerged in the chhukha district of southwestern bhutan [ ]. in northern india, an epidemiological study of human rabies patients admitted to various hospitals in amritsar city, punjab, revealed that dogs were the source of exposure in . percent of cases and they were all suspected of having rabies. a history of second or third degree bites existed in all the cases [ ]. similar results were reported in a local hospital in ahmedabad, gujarat, in eastern india [ ]. the capital city, too, reports numerous cases of rabies due to dog bites. for instance, in an analysis of human rabies cases in delhi the animal bites involved were largely of dogs, followed by jackals, cats, monkeys, and mongooses. also, the male-female ratio was : probably suggesting that higher exposure to outside activities or field work is an important risk factor [ ]. southeast asia: rabies is a recurrent public health concern in southeast asia [ ]. thailand, for example, is a country visited by adventurers, off-the-beaten-path travelers, and backpackers every year [ ]. in the first years of the s, foreign travelers of multiple nationalities who had sojourned in thailand for a little over two weeks were asked about potential exposure to rabies during their stays. of the , travelers surveyed, had been bitten and had been licked by dogs [ ]. much later, in , a survey of foreign backpackers in their mid-twenties who visited thailand’s capital found that had been licked by a dog [ ]. moreover, in a survey of exposure to rabies in humans, out of foreign aid workers and missionaries from norway that traveled abroad were recommended post-exposure vaccination. of these, percent had either been licked by or had cared for a suspected rabid animal [ ]. moreover, rabies is also a concern to military officers. in vietnam, despite the accessibility to vaccines for both animals and humans, rabies remains a problem in many areas of the country. while the number of rabies deaths decreased by percent from to , the number of rabies deaths increased from to [ ]. later, a study to determine the molecular epidemiology of rabies virus in vietnam revealed that vietnamese and thai rabies viruses are closely related and might have originated from a common ancestor [ ]. in cambodia, the rabies burden is largely underestimated because patients with encephalitis following dog bites are rarely hospitalized and die at home. data from indicated that the estimated rabies-related mortality exceeded that of malaria and that of dengue. to make matters worse, free access to post-exposure prophylaxis is only sufficient for phnom penh residents [ ]. in east asia, too, rabies is emerging as a serious public health issue [ , , ]. china has witnessed an increasing incidence of rabies in recent years and the number of deaths ranked first among the notifiable infectious diseases [ ]. a group of chinese scientist ventured into exploring the possible origin, phylogenetic relationships, and evolutionary dynamics of asian rabies viruses through examination of complete nucleoprotein gene sequences from rabv isolates in the region. their analyses demonstrated that china appears to be the prime source of asian rabies viruses [ ]. if there is a common theme among all of the above cases is that the epidemic of rabies is showing a rising trend in east, south, and southeast asia, as well as in africa and the americas. animals , . exposures and interactions at the animal-human interface the first published estimate of a global disability-adjusted life year (daly) score for rabies indicates that the disease exerts a considerable public health impact, exceeding other prominent diseases that currently achieve a higher priority for disease control [ ]. this may be partly explained by exposures and interactions between humans and animals in urban, periurban, and rural settings. for instance, researchers conducted a matched case-control study to better define the risks associated with pets at both the household and individual levels. their findings suggest that dogs may facilitate the transfer of pathogens and vectors into the home. activities with close extended contacts with dogs may increase the risk of plague, rabies, and other infections [ ]. another factor to consider in animal-human exposures and interactions is dog bites. dogs that are less restricted in their interactions with humans are at elevated risk for biting; however, links between interaction and dog bites in one cultural setting might not exist in another [ ]. a case review of dog bites notes that children and elders are usual victims of unsuspecting rabid dogs [ ]. also, as already noted in some cases in thailand, dog licks may pose a health risk. in many countries around the world, be it developed or developing, the licking of humans by dogs that are rabid or suspected to be rabid poses a major risk to human health [ ]. for example, there is a report of a patient who developed meningitis due to pasteurella multocida transmitted by a dog that frequently licked his ear [ ]. it would be a mistake to think that exposures and interactions with dogs are limited to outdoors, playgrounds, dog parks, or even households. as dogs are widely accepted in other social settings, they are more prevalent in more locations too. for example, dogs are probably the most widely used animals in pet therapy and seem to have a very positive therapeutic effect. they also appear to potentially transmit the greatest number of zoonotic diseases [ ]. in a study that measured for the first time the prevalence of zoonotic organisms among dogs that actively visit hospitals as part of an organized program, researchers identified many concerns regarding the potential for carriage of zoonotic pathogens (including rabies) by dogs involved with visitations. while it is widely recognized that visitation of hospitalized people by dogs is becoming commonplace, more attention needs to be given to the potential health risks of introducing dogs to healthcare settings [ ]. leading scientists and researchers around the world have been trying to understand the global temporal and spatial patterns of animal diseases through an array of instruments and cutting-edge molecular technologies to track the genetic makeup of infectious pathogens. if there is a commonly shared outlook among experts it is that novel zoonotic diseases will continue to emerge [ ]. it is with this conviction that governments around the world are moving forward with strong plans to prevent and control diseases with high public health impacts. the prevention of human rabies is accomplished by controlling rabies in domestic and wild animals, including the use of vaccination programs [ ]. thankfully, technology has advanced rapidly since modern human rabies vaccines were developed over years ago. however, the usability of human rabies vaccines is hampered by high cost, complicated vaccination regimens, and lack of compliance, especially in areas of africa and asia where human rabies infections are endemic. it is believed that a single-dose vaccine would greatly benefit efforts to combat this global health threat. however, a single-dose vaccine based on current inactivated vaccines does not appear feasible and other approaches are needed [ ]. to this end, rabies dna vaccines have shown good efficacy in preventing rabies in some experimental animal models; animals , regrettably, their performance in post-exposure treatments has been less impressive. in view of lackluster outcomes, the development of current dna vaccines to rabies for use in humans is, at current times, not entirely appropriate [ ]. on the topic of vaccines and their applicability, it worth noting that, in the united states, a move to provide dogs and cats with a triennial rabies vaccine was opposed by hundreds in the veterinary community, some concerned that its implementation would be followed by a decrease in rabies vaccination rates. a study attempting to document a decrease in rabies vaccination rates found positive changes (increases) in rabies vaccination rates following migration from one to three-year vaccination intervals [ ]. lastly, experts and physicians continue to remind dog owners, victims of dog bites, nurses, and veterinary professionals that there are certain risk factors that must be considered when deciding on post-exposure treatment for rabies. these include (a) age of victim, (b) site of bites, (c) severity of wound, and (d) the state of dog’s health [ , ]. the next section will share reflections on what to expect of canine rabies in the second decade of the st century. . finding guidance and perspective: looking ahead and beyond many of the current approaches to disease prevention and control emphasize transmission disruption. whilst critically important, this approach in itself does not address the root causes of disease incidence. one of the options to effectively deal with the latter is to more emphatically address and tackle the drivers of zoonotic diseases [ ]. understanding the factors for emergence and reemergence of high-impact infectious diseases requires a holistic perspective that incorporates socio-cultural as well as physical, chemical, and biological dimensions of our planet’s systems. the notion of bio-complexity captures this depth and richness, and most importantly, the interactions of humans with natural ecosystems [ ]. in the case of rabies, one of the drivers is the increasing interactions of animals (i.e., pets and free-roaming dogs) with the pathogen in multiple environments and settings. the elimination of rabies viruses from the animal reservoir constitutes an investment in preventing rabies in humans. veterinary public health practice has demonstrated that a reduction of canine rabies correlates with a substantial decrease in human rabies cases. if rabies is eliminated from domestic animals and wildlife, the incidence of rabies in mankind will also be controlled. animal rabies can be controlled by proper induction of herd immunity, humane removal of stray animals, promotion of responsible pet ownership through education, and enactment of leash laws, among many other measures [ , , , ]. others believe that the control of rabies largely depends on the prevention of infection of dogs by vaccination in endemic areas and the control of their movement, including measures of quarantine and vaccination [ ]. in western africa, for example, where rabies runs rampant, the building of veterinary capacity through post-secondary education has been proposed as a viable measure that could uphold public health in countries such as benin, burkina faso, côte d'ivoire, senegal, and sierra leone [ ]. in matongo, tanzania (east africa), locals in the region are encouraged to have their domestic dogs vaccinated against rabies to prevent cross-species transmission as part of a campaign to reduce the risk to public health [ ]. the few positive experiences in africa show that community-based active surveillance provides a potentially cost-effective strategy for greatly improving estimates of rabies incidence and to enhance epidemiological studies geared to inform veterinary and policy decision making [ - ]. animals , moreover, in , rabies experts from francophone african countries met in côte d'ivoire to discuss the disease that for long has been affecting their continent. they presented the situation in their respective countries, acknowledging the lack of rabies awareness among the population, health care workers, and health authorities. they fully recognized that infrastructure for the management of rabies exposure is scarce, accessible and modern vaccines are limited, and immunoglobulins are lacking in most of their countries. they defined as a priority the need to have reliable figures on the disease burden, which is necessary for informed decision making and priority setting, and for applying for foreign aid in controlling rabies in urban and rural settings. this meeting ended with the establishment of the africa rabies expert bureau (afroreb). in view of these efforts, other continents and regions can learn from what is being done in africa to establish their own rabies prevention and control centers. in the end, it is the necessity of implementation and maintenance of rabies control strategies that is so strongly underlined for minimizing human risks and threats. with regards to rabies control in agricultural and natural ecosystems, alternative paths and routes have been proposed. a number of suggestions have been advanced to monitor rabies in bats, but the rare cases of rabies transmission directly to humans from bats arise because rabies changes a bat’s behavior so that it does encounter and bite humans, which a healthy bat (other than a vampire bat) would never do [ , ]. another alternative path is wildlife vaccines. vaccinations to reduce diseases among wildlife species becomes a contested alternative given a number of complex issues associated with economics and practicality, scientific debate regarding effectiveness, conservation ecology, and public perception. for over years, it has been shown that oral-route vaccination could generate protective immune responses in domestic and wild animals (dogs and foxes). this was the finding that led to the success of rabies wildlife vaccine usage, and it should continue [ ]. some commentators believe that with sustained international commitments, global elimination of rabies from domestic dog populations, the most dangerous vector to humans, is a realistic goal [ ]. overall, the promotion of responsible dog ownership combined with effective vaccination and sterilization of owned dogs would have to be implemented, and regular vaccination of dogs continued. if the medical infrastructure is strengthened by educating more healthcare and veterinary workers and improving the availability of safe and effective biological products, especially animal vaccines and human rabies post-exposure prophylaxis, the world would be able to drastically reduce human rabies cases. also, the current rabies programs could be improved by better supervision, improving interaction between authorities, increasing rabies awareness, and altering urban planning and development to balance the interaction between humans and animals. we must recognize that decades of extraordinary scientific and technological progress coupled with mass-reaching information technologies now grant collective confidence that development and diffusion of best practices, lessons learned, and continuing innovation can advance our world much further in better management of zoonotic diseases that arise at the animal-human interface and also now offers other cardinal directions for a healthy and prosperous environment for all [ ]. although a major focus of the recent efforts towards global health governance schemes will be on zoonotic infectious diseases [ ], there are critical areas within this contemporary initiative which small companion animals (i.e., cats and dogs) should play a significant role. the availability of the canine genomes and the development of microarray genomic screening tools provide the world with the unprecedented ability to explore the basis of canine diseases that so closely mimic those that occur in man [ ]. animals , . personal reflections: awareness-raising, prevention strategies, and mitigation efforts education is an important element in the prevention and control of rabies. teaching about rabies and post-bite measures to students in primary schools and the first levels of secondary schools may prove beneficial in the long-term. the assumption is that by teaching students, they will carry this knowledge home to their families and friends, and in turn disseminate information to a wider community. the belief is that teaching children about rabies provides a solid foundation for reducing risks of contracting rabies and thus aim for a rabies-free future. in comparison to adults, it is easier for children to learn new information through already familiar activities at school. the incorporation of rabies education into school curricula is not simply a one-time educational event, but rather a sustained effort as the information becomes disseminated throughout countries and regions each year without the need for recurrent monetary resources. to date, there are anecdotal reports of very positive experiences coming out from schools in the philippines and sri lanka on the introduction of rabies related educational information into their regular school curriculums. prevention strategies are critical to better manage rabies in endemic areas. vaccinating domestic dogs can substantially reduce the numbers of canine rabies and, most importantly, human rabies cases. but, for this to happen, government-funded registration and licensing of dogs should be made compulsory and enforced at city or town level. overall, dog population management and the promotion of responsible dog ownership combined with vaccination and sterilization of owned dogs in rural and urban areas would have to be implemented, and regular vaccination of dogs continued. also, existing rabies prevention programs could be improved by better supervision, improving interaction between authorities, increasing rabies awareness, and altering urban planning and city development to balance the interaction between humans and animals. in many locations around the world, taskforces on rabies prevention and control have been established to bring together both animal and human health professionals and scientists to review current 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licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution license (http://creativecommons.org/licenses/by/ . /). int. j. environ. res. public health , , ; doi: . /ijerph www.mdpi.com/journal/ijerph article surveillance of zoonotic parasites in animals involved in animal-assisted interventions (aais) giulia simonato ,*, patrizia danesi , antonio frangipane di regalbono , giorgia dotto , cinzia tessarin , mario pietrobelli and daniela pasotto department of animal medicine production and health, university of padova, viale dell’università , legnaro, padova, italy; antonio.frangipane@unipd.it (a.f.d.r.); giorgia.dotto@unipd.it (g.d.); cinzia.tessarin@unipd.it (c.t.); mario.pietrobelli@unipd.it (m.p.); daniela.pasotto@unipd.it (d.p.) istituto zooprofilattico sperimentale delle venezie, viale dell’università , legnaro, padova, italy; pdanesi@izsvenezie.it * correspondence: giulia.simonato@unipd.it; tel.: + - - received: august ; accepted: october ; published: october abstract: animal-assisted interventions (aais) are based on the establishment of a therapeutic relationship between animals and beneficiaries that is certain to provide positive effects, while currently, it reads as if aais aim at exposing stakeholders to potential risk of infection. the surveillance of zoonotic pathogens is necessary for guaranteeing common health. this study investigated the presence of potentially zoonotic parasites, including dermatophytes, in animals involved in aais. between and , animals (equids, dogs, cats, birds, rabbits, rodents, and goats) were investigated. anamnestic and management data were recorded. individual faecal samples were analysed using a copromicroscopic procedure. fur and skin were examined for ectoparasites during clinical examinations, and samples for mycological investigation were collected by brushing. parasites were described in ( . %) investigated animals. thirteen out of the ( . %) animals harboured potentially zoonotic parasites, mainly recovered in dogs (ancylostomatidae, eucoleus aerophilus, toxocara canis, and giardia duodenalis) and a cat (g. duodenalis). nannizzia gypsea and paraphyton mirabile, potential agents of cutaneous mycosis, were isolated in a dog and a horse, respectively. no ectoparasites were found. aais might represent a source of infections either directly or via environmental contamination. thus, active surveillance is necessary and animal screenings should be planned and scheduled according to the risk of exposure. keywords: animal-assisted interventions; pet therapy; parasites; dermatophytes; zoonoses; pet; settings; public health; italy . introduction the positive impact of pets on the health of owners and people involved in animal-assisted interventions (aais) has been extensively documented [ , ]. these animals improve people’s perceptions of situations and encourage them to lead a better lifestyle due to daily exercise and the reduction in psychophysical distress [ , ]. moreover, the guided interaction between people and trained animals helps patients to face health problems with a positive mood and to improve social awareness and communication in people with mental disorders [ , – ]. the italian national guidelines ( ) for aais of the italian ministry of health describe three different typologies of interventions, i.e., animal-assisted activity (aaa), animal-assisted education (aae), and animal-assisted therapy (aat), that include professionals with growing expertise and whereby animals are coming into increasingly close contact with people/patients [ ]. to date, these int. j. environ. res. public health , , of guidelines have provided some general criteria for ensuring that aais are correctly and evenly applied in the national territory; in particular, veterinarians are considered responsible for animal health, but no structured protocols to check the health and the potential parasitic zoonoses of animals operating in aais have been provided until now. in , the national health institute summarised some considerations collected throughout the national territory during these four years of guideline application and elaborated some generic protocols for the control of health and wellbeing of the involved animals. this report represents only the starting point for improvement of the national guidelines currently in use toward improving the therapeutic efficacy of aais and facilitating more conscious management of the recruited animals [ ]. previous studies have already shown that apparently healthy animals involved in aais have a potential epidemiological role in asymptomatically carrying and even transmitting zoonotic pathogens to people [ , , ]; this is of particular concern in aat because the animal teams visit healthcare settings and interact with patients that could be immunocompromised for physiological and/or pathological reasons (e.g., age, pregnancy status, pre-existing pathologies, immunosuppressive therapy, and hiv/aids infection) [ ]. this study describes preliminary data on the presence of potentially zoonotic parasites (i.e., endoparasites, ectoparasites, and dermatophytes) in various animal species working in aais in different settings (e.g., petting zoos, schools, and healthcare facilities); in particular, the first aim of the project was to evaluate if zoonotic parasites could circulate in clinically healthy animals and, if present, open a point of discussion in order to improve the italian guidelines, currently in use. in addition, another aim is to verify the presence of non-zoonotic parasites in order to describe the animals’ health status. finally, the last aim is evaluation of the real need to improve animal screening and to assess different protocols for checking the animals’ risk exposure to pathogens (e.g., habits, co-living with other animals, and lifestyle) with the overall purpose of guaranteeing both human and animal health. . materials and methods parasitoses in animals involved in aais were investigated over two consecutive years (july – ). the survey was conducted on a voluntary basis, enrolling organizations from northern and central italy. recruited animals were involved in aais conducted in different contexts and with increasing levels of exposure risk to pathogens, where interaction with animals was always present and mostly involved close contact. since many animals attended more than one context, for each animal, the context with the major risk level of exposure was considered. . . description of settings the contexts in which the animals worked were divided into three main settings: health facilities, petting zoos, and schools. the health facilities included hospitals, rest homes, care settings, and residential centres for physical and/or psychiatric disabilities where beneficiaries of aais—mainly aat and aaa—being immunocompromised, with pre-existing pathologies, in immunosuppressive therapy, and stressful conditions and habits (i.e., patients with mental disorders that could have poor personal hygiene measures) might be exposed to the risk of potential zoonoses. petting zoos are a context in which pets and farm animals are placed together and live in the same environment wherein various activities with animals are offered (e.g., observational activities, projects on animal knowledge, school trips, and therapy for physical and mental disabilities, such as autism and relational problems); thus, they are open to a wide range of members of the public. in particular, animals belonging to petting zoos come into direct contact with a wide range of people, i.e., adults, teenagers, school-aged children, and toddlers. in this context, the risk represented by the age of children is that they may not yet have a competent immune system and/or appropriate hygienic habits. int. j. environ. res. public health , , of schools represent the last context in which animals interact only with toddlers and school-aged children (i.e., pre- and primary schools) who could be healthy and able-bodied and, in some cases, could have minor relational problems. the activities include school trips and inclusion projects with the aim of harmony and cohesion between beneficiaries and projects regarding the correct approach toward animals (aaa and aae). in this latter context, as described for petting zoos, the risk of exposure is related to the not-yet-competent immune system and inappropriate hygienic behaviour of users. during the sampling period, some animals were in training and were not yet involved in aais but they were examined and included in the study regardless due to their close relationship with their owner/trainer and cohabitation with other assisted therapy dogs. they belonged to a separated group referred to as “in training”. . . anamnestic data and physical examinations firstly, anamnestic data on recruited animals were collected (i.e., species, sex, age, breed, antiparasitic treatments, context of aais, and close human–animal contact). secondly, animals were physically examined to directly isolate ectoparasites (i.e., fleas, ticks, and lice) and/or to evaluate clinical signs related to them and to dermatophytosis (e.g., alopecia, scratching lesions, dermatitis, etc.) and/or to endoparasites (e.g., weight loss, pale mucosae, swollen abdomen, diarrhoea, vomitus, cough, etc.). . . faecal sampling and analysis animals involved in the project were sampled once. faecal samples were individually collected, identified, and labelled. faeces were conserved under refrigerated conditions and analysed within h. each stool sample ( g for small animals and g for farm animals) was submitted to a copromicroscopic technique consisting of sedimentation followed by a floatation step with sodium nitrate solution (specific gravity . ), as reported in the maff (ministry of agriculture, fisheries and food) manual ( ) [ ]. each faecal floatation was observed on a slide under a light microscope for the morphometric evaluation of helminths eggs and protozoa (oo)cysts at × and × magnification, respectively, according to existing keys [ , ]. . . fur and skin materials collection and analyses fur and skin materials were individually collected using the mackenzie brush technique, conserved at room temperature into a single clean plastic bag, and sent to the laboratory for mycological investigations. brushes (and skin specimens) were cultured onto mycobiotic agar and incubated at °c for at least days. cultures were checked daily and were considered positive when a single colony was morphologically suggestive of dermatophyte under the microscope as assessed by lactophenol cotton blue preparations. all dermatophyte colonies were isolated on sabouraud dextrose agar for dna extraction. molecular investigations, including pcr targeting the its / rdna region [ ] and sequencing of the amplicons, were performed in order to confirm fungal identity and to correctly assign taxonomy. . results a total of animals (i.e., equids, dogs, cats, birds, rabbits, rodents, and goat) were recruited. the animals provided their activities within health facilities (n = , . %, e.g., hospital, rest homes, and mental healthcare facilities), primary schools (n = , . %), and petting zoos (n = , . %). six ( . %) dogs were in training for aais. the prevalent species involved in aais were equids and dogs. in particular, dogs (n = / , . %) mostly attended health facilities, whereas equids worked mostly in petting zoos (n = / , . %) and with children/toddlers during school trips (n = / , . %). the animal species’ distribution among the different aais is shown in figure . int. j. environ. res. public health , , of figure . number of study animals and their distribution in the main settings of animal-assisted interventions (aais). . . physical examinations at the physical examinations, all animals presented a good health status with neither parasitic arthropods (i.e., fleas, lice, and ticks) nor clinical signs referring to ecto- and/or endoparasites detected. most of the pet owners declared that their animals were regularly treated against ectoparasites (dogs with pyretroids or fipronil and cats with imidacloprid or fipronil) and against endoparasites with wide-spectrum anthelmintics (i.e., associations with avermectins for both dogs and cats) but no time frames for administration were reported to evaluate the effective regularity; the other animal species received treatments randomly or only in the case of clinical signs. . . zoonotic parasites copromicroscopic analyses revealed the presence of at least one endoparasite species in / ( . %) animals. in particular, / ( . %) animals harboured potentially zoonotic parasites, mainly recovered in dogs (n = / ) as well as in a cat. in table , the prevalence values of all parasites are reported. table . copromicroscopic results: number of investigated and positive (%) animal species and description of the isolated parasites. animal species positive animals subgroups of positive animals description of isolated parasites animals (total number) total number (%) number (%) zoonotic parasites non-zoonotic parasites equids ( ) ( . ) ( . ) intestinal strongyles dogs ( ) ( . ) ( . ) eucoleus aerophilus - ( . ) giardia duodenalis - ( . ) giardia duodenalis trichuris vulpis ( . ) toxocara canis - ( . ) ancylostomatidae - ( . ) trichuris vulpis cats ( ) ( . ) ( . ) giardia duodenalis - in training health facilities petting zoos schools n u m b e r o f a n im a ls dogs cats equids birds lagomorphs rodents goats int. j. environ. res. public health , , of birds ( ) ( . ) ( . ) - capillaria spp., coccidia ( . ) - capillaria spp., heterakis spp., coccidia lagomorphs ( ) ( . ) ( . ) - coccidia rodents ( ) ( . ) ( . ) - - goat ( ) ( . ) ( . ) - coccidia total ( ) ( . ) the most prevalent zoonotic parasites were the respiratory nematode eucoleus aerophilus and the enteric protozoa giardia duodenalis (both, n = / positive dogs, . %), followed by intestinal hookworms (i.e., ancylostomatidae) and ascarids (i.e., toxocara canis) (both, n = / , . %). the positive cat was infected with g. duodenalis (table ). in addition, dogs worked in health facilities and the other two in schools with children; the positive cat worked in rehabilitation and occupational therapy (i.e., health facilities) and also in schools among children (figures and ). figure . copromicroscopic results. distribution of negative and positive (zoonotic and species- specific) results among the contexts of the aais. no endoparasites with zoonotic potential were recovered in the other investigated animals (figure ). among the studied contexts, the animals found to be affected by potentially zoonotic parasites attended health facilities and schools (figure ). in particular, . % (n = / ) of animals attending health facilities were positive for at least one parasite species, and half of those, / , presented zoonotic parasites, such as ancylostomatids, e. aerophilus, and g. duodenalis. in schools, / ( . %) animals had parasites and / ( . %) were dogs shedding t. canis ova. the cat shedding g. duodenalis cysts was not considered in the descriptive analyses of school settings because it was included in the category at major risk of exposure (i.e., health facilities) as previously stated in the materials and methods section; on the other hand, it is important to highlight that it represented a source of infection also for children in schools. % % % % % % % % % % % in training health facilities petting zoos schools total potentially zoonotic parasites species-specific parasites negative int. j. environ. res. public health , , of figure . copromicroscopic results. distribution of negative and positive (zoonotic or species- specific) results in each animal species. . . non-zoonotic parasites a total of / ( . %) positive animals presented species-specific parasitosis. in particular, equids, birds, and lagomorphs showed prevalence values of . % (n = / ), % (n = / ), and . % (n = / ), respectively, and the only investigated goat was positive (table ). among pet animals, only dogs were positive for a species-specific parasite (i.e., trichuris vulpis, table ). among the settings, animals in petting zoos were infected only by species-specific parasites (n = / , . %) (figure ). the . % (n = / ) of animals attending health facilities were positive for at least one parasite species, and half of them ( / , . %) had species-specific parasites, such as intestinal strongyles (i.e., donkeys) and t. vulpis (i.e., dogs). in schools, / ( . %) animals were positive for parasites, and among them, five had species-specific parasites (i.e., horses with intestinal strongyles) (figures and figure ; figure ). . . dermatophytes cultures positive for dermatophytes were described in two animals ( / , %). more precisely, nannizzia gypsea (ex microsporum gypseum) was isolated from a dog and paraphyton mirabile (ex arthroderma mirabile, microsporum mirabile) was detected from a horse. the positive animals worked with children and elders in a rehabilitation and occupational therapy context (i.e., health facilities). . discussion pet therapy originated in the s as an innovative therapeutic activity with the purpose of improving the health of patients through methodologies involving animals. the effectiveness of aais is strongly dependent on the quality of the relationship that the beneficiary establishes with the animal, which is strictly linked to the health and wellbeing of the involved animal. in italy, only in recent decades were aais considered, and their recent distribution along the national territory is greatly increasing to the point that the ministry of health, in , published national guidelines to define the operating standards to evenly and correctly apply these interventions across the country. moreover, the guidelines were issued for guaranteeing the health % % % % % % % % % % % dogs cats equids birds lagomorfs rodents goat potentially zoonotic parasites species-specific parasites negative int. j. environ. res. public health , , of and wellbeing of involved patients and animals. in particular, veterinarians with expertise in aais and responsible for the health of animals operating in aais had no scheduled protocols to follow, and all the controls they advised and applied were complete at their own discretion. to date, there is a lack of widely shared criteria for the assessment of the health status and the wellbeing of the animals operating in the aais. recently, the national health institute reported the most recent scientific acquisitions and, with the help of some experts, elaborated some generic protocols useful for this purpose, which represents a starting point for improvement of the national guidelines for aais. previous studies have already demonstrated that apparently healthy animals involved in aais have a potential epidemiological role in asymptomatically carrying and even transmitting zoonotic pathogens to people [ , , ]; thus, the surveillance of potential zoonotic pathogens is mandatory for the health of both humans and animals and scheduled protocols to monitor their presence are strongly advised. in our survey, multiple species of animals involved in aais were examined and their individual faecal samples and skin materials were analysed to evaluate the presence of parasites and dermatophytes, with particular interest in those that are potentially zoonotic. upon physical examination, all animals were in good health and no ectoparasites were detected, nor were there any clinical signs of parasites and/or dermatophytes in terms of recovery, even though a considerable number of animals, except dogs and cats, were randomly treated by owners against helminths and, only when considered necessary, against ectoparasites without a planned schedule. therefore, due to their asymptomatic status, one-third ( . %, n = / ) of recruited animals presented unexpected parasitic infections. the antiparasitic treatments adopted by owners/trainers were not scheduled, nor were they regular or specific, and they were often based on the owner’s initiative. thus, they were useless in controlling parasitosis. since the national guidelines give free initiative to veterinarians for the assessment of the animal health status, the control of external and internal parasitosis is often managed at the owner’s initiative, which, in some contexts, seems to be not sufficient for avoiding unexpected parasites. of the positive animals, . % (n = / ), comprising dogs and a cat, were affected by potentially zoonotic parasites, and these results are in agreement with data reported in gerardi et al. ( ), where dogs involved in aais were investigated for parasites by copromicroscopic procedure, with positive results for g. duodenalis, e. aerophilus, t. canis, and a. caninum. these endoparasites are recognised worldwide as having zoonotic potential [ , – ]. for instance, giardia is a protozoan parasite, immediately infective for many mammals, including humans, when shed by the host [ ], and the other helminths have parasitic elements, i.e., eggs/larvae, that need time to be infective once excreted and whose zoonotic potential is strictly linked to environmental contamination [ ]. in particular, the risk for humans to be infected by g. duodenalis is still discussed and depends on prevalence rates of the protozoa and on its circulating assemblages. in fact, among the eight assemblages reported in the literature, a and b are considered zoonotic [ ], and since they are frequently found in household animals [ , ], such as the dogs recruited in this survey, their presence should be strongly considered in therapy animals. in this survey, four dogs and one cat shedding giardia cysts without clinical signs attended health facilities (i.e., hospitals and residential communities for psychiatric patients) and were involved in aais. since no molecular investigations were carried out to identify giardia assemblages isolated in pets, in our point of view, these animals should be considered as infected by potential zoonotic genotypes and treated accordingly. considering the zoonotic helminths isolated as a. caninum, e. aerophilus, and t. canis, since they need time to be infective, the risk of human infection is strictly linked to the contaminated environment [ , ]. thus, personal and environmental hygiene are strongly recommended to avoid undesirable parasitosis. the presence of zoonotic helminths and protozoa, mostly in dogs, suggests that the regular treatments declared by owners are not sufficient to control the parasitosis and, overall, not effective against protozoa infections. moreover, it is strongly recommended that copromicroscopic examination be carried out at least monthly in these animals according to the european scientific counsel companion animal parasites (esccap) guidelines, with specific diagnostic tests (e.g., baermann test, rapid coproantigen test, and pcr) eventually added, considering that dogs belong to int. j. environ. res. public health , , of the category at major risk of infections [ , ]. based on the results of this study, monthly treatment with repellents or parasiticides against arthropods [ ] is, in any case, advised for prevention, even if animals do not present visible ectoparasites or clinical signs referring to their presence. most positive animals ( . %, n = / ) presented species-specific parasitosis, highlighting the need to improve the management of the animals with the purpose of guaranteeing their good health status and overall wellbeing—e.g., regarding the hygiene of animals, daily cleaning of shelters/stalls, frequent faeces removal, and routine copromicroscopic examinations followed by appropriate treatment. in fact, the style and living conditions of animals can influence their stress levels, which increase, for example, when the density of individuals in a restricted area grows, debilitating their immune system and making them more susceptible to infections, especially in poor management situations where the high environmental contaminations increase the risk of infection and pathogen transmission among animals [ – ]. both nannizzia and paraphyton represent new genera included in the most recent taxonomy of dermatophytes [ ]. accordingly, “geophilic” dermatophytes have been renamed and allocated into separate genera, whereas the “zoophilic” microsporum and trichophyton species have maintained their classical name. the scientific community’s message is to maintain the classical nomenclature for fungal strains that are clinically relevant (including zoophilic and anthropophilic strains) and to address the “environmental” origin of geophilic dermatophytes. this concept is very important in terms of epidemiological approach. in our study, both nannizzia gypsea and paraphyton mirabile represent fungi that live and reproduce mostly in the soil. by contrast, zoophilic dermatophytes live and reproduce mostly on animals, and possibly on humans, if infected, and thus represent the real zoonotic risk. results from this study indicate that the dog and horse were infected through contact with a contaminated environment, suggesting that patients, keepers, and other people operating in the same area are also exposed to the risk of infection by contact with the same soil. these results highlight the importance of going into deep identification at the species level for dermatophytes, even with molecular tools, in order to apply effective prophylaxis measures. indeed, in our study, the infections mostly resulted from environment–host contact rather than animal–human contact. geophilic species, as well as zoophilic species, may occur asymptomatically in mammals [ ]. thus, it is important that other animals also be monitored for dermatophytes in order to avoid their transmission to humans and other animals, which is favoured by their superficial localization on animal skin (zoophilic species) and the contamination of the environment by spreading of infective spores. in addition, animals should also be screened for dermatophytosis (fungal culture or, eventually, pcr) and excluded from activities until the results of cultures or pcr are confirmed to be negative. then, it is recommended that topical treatments be adopted as recommended by the esccap gl ( ), such as rinses or shampoos containing antifungal molecules, i.e., enilconazole or miconazole, h before the activity, treating them as exposed animals [ ]. sodium hypochlorite solution at a : dilution and enilconazole solution could be adopted for washable surfaces and objects (i.e., brushes, combs, rugs, and cages) to control environmental dermatophyte spores. in animal shelters, it is advised that environmental surfaces be sampled to verify that disinfection has been effective. the results emphasise that it is vital to routinely check animals, especially those that could be asymptomatic, that work daily with people that could be immunocompromised (e.g., patients, children, and elders with pre-existing pathologies) [ , , ] or have inappropriate behaviour that favours infectious diseases, such as toddlers and patients with mental disorders, who could have poor hygiene behaviour [ ]. a detailed control program, including laboratory analyses specific for each animal group, should be planned according to their activity, with particular attention given to animals attending health facilities and schools that are in close contact with people at major risk of infection. strengths and limitations this study represents one of the first surveys in the national territory evaluating the parasitic health status of animals operating in aais. to the best of our knowledge, this is the first time that a int. j. environ. res. public health , , of wide range of animal species has been evaluated within different settings where the pathogen exposure risk was various. the collected results are preliminary and summarily informative but sufficient to suggest that zoonotic endoparasites circulate more than expected, especially in pets that are, among the animal species involved in aais, more easily recruited for activities in health facilities. luckily, the copromicroscopic analyses were sufficient to identify most of the parasite species, even if molecular investigations would greatly improve the results of the study by adding new points of discussion and have to be done; unfortunately, molecular investigations were applied only for species identification of dermatophytes at the expense of g. duodenalis assemblages and hookworm species. even if collected data do not prove the effective risks for stakeholders’ health, they call attention to potential ones. to evaluate the effective risks, further investigations need to be carried out—for example, molecular analyses on the isolate’s dna. moreover, the investigation of ectoparasites was during the clinical examination and no standardised methods of brushing were adopted. no arthropods nor clinical signs were registered but these data are not sufficient to conclude that they were absent; thus, the regular application of ectoparasiticides is suggested. . conclusions this study is a preliminary survey on parasitoses in animals involved in aais and represents a starting point for further investigation. since the benefits of aais for people are extensively documented and the activities involving animals are spreading throughout the entire national territory, the risk of exposure to pathogens for both humans and animals should be taken into account. the collected data highlight the need to define criteria and tools to assess the wellbeing and health of animals operating in aais, considering overall asymptomatic animals that can carry potential zoonotic pathogens. for this reason, different protocols should be planned based on the real risk of exposure of animals to pathogens in relation to the lifestyle, management, and type of aais in which they are involved toward guaranteeing animal and human health according to the increasingly important concept of “one health”. author contributions: conceptualization, d.p. and g.d.; methodology, c.t., g.d. and p.d.; dataset, d.p., g.d. and g.s; data elaboration, g.s.; investigation, d.p. and g.s.; writing—original draft preparation, g.s., d.p. and p.d.; writing—review and editing, g.s., d.p. and a.f.d.r.; supervision, a.f.d.r. and m.p.; project administration, d.p.; funding acquisition, d.p. and p.d. all authors have read and agreed to the published version of the manuscript. funding: this research was funded by university of padova, grant number cpda , and by the 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and alternative medicine complementary and alternative medicine a population health clerkship investigation nisarg chhaya; alan kwan; liz li; jesse moskowitz; alex newbury; eva rouanet; leah shesler; lauren testa; jess tolson population of focus: pediatric patients (inpatient and outpatient) epidemiology: approximately % to % of healthy children seen in outpatient pediatric clinics and more than % of children with chronic, recurrent, and incurable conditions use cam, almost always in conjunction with mainstream care (kemper). social determinants & health care access factors: -many cam modalities are not covered by insurance companies. success of insurance coverage for music therapy has been reported on a case-by-case basis. -language, cost, insurance coverage, transportation, knowledge of existing services. advocacy: the current focus of advocacy groups is to increase the availability of these services and ultimately improve the scope of care that is offered to patients. key advocacy groups: • national center for complementary and alternative medicine (nccam) • american holistic medical association service-learning project goals: . gain a better understanding of and experience different practices involved in complementary and alternative medicine. . provide an online resource about these modalities and how to access them. progress: we are compiling information and resources on various complementary and alternative medicine modalities which will be incorporated into the umms library website. animal-assisted therapy: ● the american veterinary medical association (avma) ( ) estimates that . million u.s. households own a pet dog, and . million own a pet cat. ● animal-facilitated therapy (aft) affects the way a patient experiences symptoms. ● therapy animals are usually not owned by the clients or responsible for their well-being, and are brought to the pet therapy session by the owner, who is called the "handler" in these sessions. ● benefits include an increase in social interactions and attention, improvement in mood, and extended life expectancy (beetz, uvnas-moberg, julius, & kotrschal, ; o'haire, ) music therapy: music therapy is the clinical and evidence-based use of music to accomplish individualized, functional, non- musical goals within a therapeutic relationship by a board certified music therapist (mt-bc) who has completed an approved music therapy program. music therapy is clinically used as an intervention to minimize trauma and normalize hospitalization. neurorhythm music therapy services, llc. ● active music engagement (ame) participants had a significantly higher frequency of coping-related behaviors (as defined by active engagement, or positive facial affect) compared with music listening or audio storybooks (robb et al., ). ● active engagement is essential if children are to learn positive coping strategies that will help buffer the impact of stress related to hospitalization (skinner et al., ). meditation has been shown to change brain structures associated with attentional and emotional regulation (kang, et al. ( ) mindfulness meditation: a practice of being fully present in each moment with non-judgmental acceptance. ● mindfulness has been shown to be beneficial in school settings in terms of improved cognitive and emotional control, decreased depression and aggression, and more. ● mindfulness among adolescents has been shown to reduce the experience and intensity of chronic pain. ● mindfulness has been used to decrease stress, minimize trauma, and help manage mental health exacerbations in youth in foster care. references: . beetz, a., uvnäs-moberg, k., julius, h., & kotrschal, k. ( ). psychosocial and psychophysiological effects of human-animal interactions: the possible role of oxytocin. frontiers in psychology, , . . elisa, sobo j., phd. "canine visitation (pet) therapy." canine visitation (pet) therapy . ( ): - . web. oct. . kang dh, jo hj, jung, wh, et al. the effect of meditation on brain structure; cortical thickness mapping and diffusion tensor imaging. social cognitive and affective neuroscience. . . kemper, k.j., s. vohra, r. walls. “the use of complementary and alternative medicine in pediatrics.” pediatrics . ( ): - . . lee, sh; couderc, jp; swanson, d; gallegos, a; hilliard, c; blumkin, a; cunningham, k; heinert, s. “a pilot randomized trial teaching mindfulness- based stress reduction to traumatized youth in foster care.” complementary therapies in clinical practice. ( ). - . . petter, mark et al. the role of trait mindfulness in the pain experience of adolescents. the journal of pain , volume , issue , – . robb, s. l., clair, a. a., watanabe, m., monahan, p. o., azzouz, f., stouffer, j. w., ebberts, a., darsie, e., whitmer, c., walker, j., nelson, k., hanson- abromeit, d., lane, d. and hannan, a. ( ), randomized controlled trial of the active music engagement (ame) intervention on children with cancer. psycho-oncology, : – . doi: . /pon. . schonert-reichl, kimberly a., eva oberle, molly stewart lawlor, david abbott, kimberly thomson, tim f. oberlander, and adele diamond. "enhancing cognitive and social–emotional development through a simple-to-administer mindfulness-based school program for elementary school children: a randomized controlled trial." developmental psychology . ( ): - . . skinner ea, wellborn jg. coping during childhood and adolescence: a motivational perspective. in life- span development and behavior, vol. , featherman dl, lerner rm, perlmutter m (eds). lawrence erlbaum: hillsdale, nj, ; – . special thanks to our faculty and community advisors & collaborators: umass: barbara grimes-smith, mph | melissa rathmell, md | hari kirin kaur khalsa, md | heather-lyn haley, phd | greg hurd, bancroft school of massage therapy | gioia persuitte, mpa, preventive & behavioral medicine | zayda vallejo, heartwell institute | lynn gerrits, ma, simonds-hurd complementary care center lessons learned: • cam can be a vital medium through which patients can regain a sense of self-control and happiness while going through a difficult time. • the quality of the cam instructor can make a huge impact on a patient’s experience • physicians need to be informed about the various cam modalities so that they can best serve their patients’ physical, mental and emotional needs. • although not fully understood, cam modalities can be useful resources for patients. recommendations for next steps: • our online resource component is continually evolving: additional resources and modalities can be added/updated on an ongoing basis. • more integrative medicine and complementary care sites in the worcester area to be explored background modalities used in children conclusions a study in canine visitation therapy found significant reduction in perceived pain in pediatric patients. (sobo, et al. ) 	complementary and alternative medicine normalization of compression-induced hemodynamics in patients responding to neoadjuvant chemotherapy monitored by dynamic tomographic optical breast imaging (dtobi) amir y. sajjadi, , , , steven j. isakoff, , , , bin deng, , bhawana singh, , christy m. wanyo, qianqian fang, michelle c. specht, , lidia schapira, , beverly moy, , aditya bardia, , david a. boas, , and stefan a. carp , optics division, athinoula a. martinos center for biomedical imaging, massachusetts general hospital, charlestown, ma , usa department of radiology, harvard medical school, charlestown, ma , usa massachusetts general hospital cancer center, boston, ma , usa department of medicine, harvard medical school, boston, ma , usa department of bioengineering, northeastern university, boston, ma , usa department of surgery, harvard medical school, boston, ma , usa these authors contributed equally to this work asajjadi@nmr.mgh.harvard.edu sisakoff@mgh.harvard.edu abstract: we characterize novel breast cancer imaging biomarkers for monitoring neoadjuvant chemotherapy (nact) and predicting outcome. specifically, we recruited patients for a pilot study in which nact patients were imaged using dynamic tomographic optical breast imaging (dtobi) to quantify the hemodynamic changes due to partial mammographic compression. dtobi scans were obtained pre-treatment (referred to as day ), as well as and days into therapy on female patients undergoing nact. we present data for the patients who participated in both day and measurements and had evaluable data, of which also returned for day measurements. we acquired optical images over minutes following - lbs ( - n) of compression. the timecourses of tissue-volume averaged total hemoglobin (hbt), as well as hemoglobin oxygen saturation (so ) in the tumor vs. surrounding tissues were compared. outcome prediction metrics based on the differential behavior in tumor vs. normal areas for responders (> % reduction in maximum diameter) vs. non-responders were analyzed for statistical significance. at baseline, all patients exhibit an initial decrease followed by delayed recovery in hbt, and so in the tumor area, in contrast to almost immediate recovery in surrounding tissue. at day and , this contrast is maintained in non-responders; however, in responders, the contrast in hemodynamic time-courses between tumor and normal tissue starts decreasing at day and substantially disappears at day . at day into nact, responding tumors demonstrate “normalization” of compression induced hemodynamics vs. surrounding normal tissue whereas non-responding tumors did not. this data suggests that dtobi imaging biomarkers, which are governed by the interplay between tissue biomechanics and oxygen metabolism, may be suitable for guiding nact by offering early predictions of treatment outcome. © optical society of america ocis codes: ( . ) functional monitoring and imaging; ( . ) medical and biological imaging; ( . ) optical diagnostics for medicine; ( . ) medical optics and biotechnology; ( . ) medical optics instrumentation. vol. , no. | feb | biomedical optics express # journal © http://dx.doi.org/ . /boe. . received aug ; revised nov ; accepted dec ; published jan references and links . globocan , “estimated cancer incidence, mortality, prevalence and disability-adjusted life years (dalys) worldwide in ” (international agency for research on cancer), retrieved october , , http://globocan.iarc.fr/. . n. a. chatterjee, y. he, and n. l. keating, “racial differences in breast cancer stage at diagnosis in the mammography era,” am. j. public health ( ), – ( ). . d. a. berry, k. a. cronin, s. k. plevritis, d. g. fryback, l. clarke, m. zelen, j. s. mandelblatt, a. y. yakovlev, j. d. habbema, and e. j. feuer; cancer intervention and surveillance modeling network (cisnet) collaborators, “effect of screening and adjuvant therapy on mortality from breast cancer,” n. engl. j. med. 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( ), – ( ). . introduction breast cancer remains the most common cancer and the leading cause of cancer-related death in women worldwide [ ]. while advances in mammographic screening have resulted in a shift to earlier stages at initial diagnosis and a reduction in breast cancer mortality [ , ], stage iii locally advanced breast cancers (labc) still constitute % of newly diagnosed cases in the united states. the incidence of labc can be as high as % in vulnerable populations, such as african american and hispanic patients [ ]. neoadjuvant chemotherapy (nact) is standard treatment for labc patients [ ] and is increasingly being used even in patients with earlier stage operable tumors because it can improve outcomes by downstaging the disease and increasing breast conserving surgery rates [ – ]. however, nact is met with heterogeneous outcomes; although - % of patients unselected for breast cancer subtype demonstrate some degree of response, only - % achieve a pathologic complete response (pcr) [ , ], which correlates with improved disease free (dfs) and overall survival (os) [ – ]. these challenges motivate the development of reliable methods for early assessment of tumor response to therapy. such methods would potentially enable oncologists to switch to alternate therapeutic agents, or simply discontinue ineffective therapy and progress to surgery, limiting unnecessary toxicity. recently published long-term survival data from the gepartrio trial (n = , patients) shows a significant dfs/os benefit for switching clinical non-responders from docetaxel, doxorubicin, and cyclophosphamide (tac) to combined vinorelbine and capecitabine (nx) vs. a standard course of tac (dfs: . hazard ratio (hr), p = . ; os: . hr, p = . ) [ ]. this was achieved despite the use of a heterogeneous combination of clinical examination, x-ray mammography and ultrasound for vol. , no. | feb | biomedical optics express assessing the early response, methods known to have limited ability in predicting the pathologic response to chemotherapy [ ]. such data suggests accurate response monitoring may enable significant improvements in nact outcomes, especially for heterogeneous subtypes, such as triple negative breast cancer (tnbc). currently, clinical examination, x-ray mammography, ultrasound, and dynamic contrast enhanced mri (dce-mri) are used to monitor tumor size as a marker of response to treatment, and to assess the volume of residual disease after treatment [ ]. however, tumor volume changes manifest themselves later than changes in underlying tumor function, such as vascular density [ ], even more so in the case of cytostatic and targeted therapies [ ]. while research is being done on the development of circulating biomarkers predictive of therapy response [ ], imaging remains the most likely avenue for therapy response guidance in the near future. however, to form early predictions of therapy success, we need imaging methods that are more closely related to tissue function, especially if the distinction between partial and complete pathological response is sought. in this respect, positron emission tomography using -deoxy- -[ f]fluoro-d-glucose ( f-fdg pet) has been shown to be able to distinguish eventual pcr after or cycles of chemotherapy [ , ] based on the amount of reduction in the tumor standardized uptake value (suv). mri methods such as pharmacokinetic modeling of dce-mri timecourses (sensitive to vascular permeability changes) and proton magnetic resonance spectroscopy ( h-mrs, sensitive to the total concentration of choline compounds (tcho) – assumed to be a marker of proliferation) have also been shown to provide mid-treatment pcr predictions [ , ]. diffusion weighted mri (dw-mri, sensitive to tumor cellularity and integrity of cell membranes by measuring the water apparent diffusion coefficient (adc)), has been shown to correlate with the degree of pathological response [ , ], but no studies to date have demonstrated effective pcr predictions. despite these positive results, a number of obstacles remain in the way of routine clinical usage of mri/pet therapy guidance. fdg-pet requires a sufficiently high initial tumor suv to be able to observe a significant decrease due to therapy [ ], and issues of cost, availability, and allowable radiation exposure restrict its use as a serial monitoring technique. on the other hand, mri challenges include limited specificity for dce-mri [ ], and the difficulty of obtaining reliable h-mrs data due to high needs for operator skill and mri hardware performance [ ], together with substantial costs and time demands on the patients. in addition, there is currently no consensus on optimal timepoints and quantitative response measures for either mri or pet methods. thus, there remains a need to develop alternative imaging methods that address the cost and availability issues of functional mri/pet while offering similar or better performance. in this context, near-infrared optical spectroscopy and tomography has emerged over the last decade as an alternative functional imaging method for neoadjuvant therapy monitoring that is relatively low-cost, non-invasive, portable, safe for repeated use, and comparatively simple to operate [ ]. near infrared spectroscopy (nirs) takes advantage of the low optical absorption of biological tissues for light with a wavelength between approximately and nm [ ]. this low absorption allows several centimeters of tissue penetration, permitting characterization of deep structures. four main chromophores contribute to optical absorption in the near infrared spectral region: oxy- and deoxy-hemoglobin (hbo, hbr), water and lipids. using multiple light wavelengths, optical imaging and/or quantitative monitoring of these chromophores gives insight into tissue physiology. the main drawback of optical imaging is the rather low spatial resolution ( - mm) caused by high tissue scattering in the near-infrared spectral region. however, this is not a significant concern for nact monitoring, because tumors treated with nact are rather large (> cm) and have a known location, and the focus is on quantification of tissue functional parameters (e.g. hb concentration) rather than tumor size. two recent nirs studies have reported a statistically significant difference between patients that achieved pcr vs. non pcr, with respect to the pre-treatment tumor hemoglobin oxygen saturation so [ ] and with respect to the reduction in hbr and a tissue optical index defined as (hbr x water / lipid) [ ]. several other studies vol. , no. | feb | biomedical optics express have shown there is an hbo “flare” in responders immediately after the first dose of chemotherapy [ ]. further, high pre-treatment total hemoglobin (hbt = hbo + hbr) correlates with complete or near complete pathological response [ ] and reductions in hbt/ hbo/hbr early during therapy predict greater than % eventual tumor shrinkage [ – ]. dynamic tomographic optical breast imaging (dtobi) is a novel technique that provides quantitative images of the variations in tissue chromophore concentration during external stimuli and can be used to develop novel imaging biomarkers for breast cancer detection and chemotherapy monitoring. both gas inhalation/breath-holding [ , ] and external mechanical stimuli [ – ] have been proposed to develop novel imaging biomarkers of breast cancer. in particular, our group has obtained promising initial results by dynamically imaging the breast tissue response to fractional mammographic compression [ , ].tissue viscoelastic relaxation during the compression period leads to a slow reduction in the compression force and reveals biomechanical and metabolic differences between normal and lesion tissue. using this method, we have shown that there is a significant difference in the hemodynamic response to compression between the tumor area and the surrounding normal tissue in a group of seventeen breast cancer patients [ ]. here we evaluate whether monitoring hemodynamic biomarkers such as variations in the compression induced changes in tissue hemoglobin concentration and oxygen saturation in the tumor area versus the rest of the breast over the first few weeks of therapy can provide predictive information for therapy outcome. we report results from a group of patients with early stage breast cancer receiving neoadjuvant chemotherapy who were evaluated using the dtobi system pre-treatment, at day and, for of them, at day into treatment. . methods . . dynamic tomographic optical breast imaging (dtobi) instrumentation the dtobi system (fig. ) consists of a high temporal resolution, hybrid continuous wave/frequency domain transmission mode diffuse optical tomography system. the optical instrumentation is integrated into a compression setup also equipped with a tekscan i-scan pressure mapping system [ ]. the frequency domain component consists of an iss imagent (model , iss inc., champaign, il). eight time-multiplexed laser diodes at , , , , , , and nm modulated at mhz inject light in the breast at a single central location near the chest wall using an optical fiber bundle. three red-enhanced photomultiplier tube detectors (hamamatsu r pmt) collect the back scattered light through . mm optical fiber bundles. the amplitude and phase parameters are extracted by in-phase/quadrature (i/q) demodulation. the frequency modulated system provides absolute optical properties and is used to obtain the baseline breast bulk hemoglobin concentration that forms the initial homogeneous guess for the d tomographic reconstruction based on continuous wave measurements. the continuous wave component consists of a techen cw imager augmented by a supplemental source device (ssd) (techen inc., milford, ma). the cw offers lasers split equally among and nm as well as avalanche photodiode (apd) detectors. the lasers are modulated at individual frequencies between ~ - khz allowing full simultaneous detection [ ]. the ssd adds lasers at additional wavelengths ( at , at and at nm) with each laser sharing a modulation frequency with a corresponding laser in the main cw box. main/supplemental laser sources were illuminated in an interleaved fashion, switching once per second. even in conjunction with the ssd, the system is able to record all source-detectors pairs at over hz, while maintaining high signal-to-noise ratio (> db) and linear dynamic range (> db). since expected breast vol. , no. | feb | biomedical optics express fig. . a) dtobi instrument mounted on a mobile cart; b) detail of breast compression probe before cart mounting – the cw sources, all fd fibers and the tekscan mat are mounted on the lower plate, while the upper, mobile plate carries the cw detector fiber bundles and is attached to the translation mechanism through force gauges. c) schematic of measurement protocol: three compression cycles (about n or lbs), each beginning with fd recording during the compression and for seconds after, followed by a minute cw recording and another second fd acquisition before the compression was released. the cycles were separated by a second no-compression period (the patient’s breast remained in place). hemodynamics are relatively slow, we averaged the cw data into second windows for improved signal quality. as described below, the tekscan system further provides a pressure map used to determine the location of the breast with respect to the optical fibers. . dtobi measurement procedure a full description of the experimental setup has been previously published by our group [ ]. in summary, the breast is placed between two horizontal parallel plates (equivalent to mammographic craniocaudal (cc) compression), which apply a repeated step compression/release to the breast. the cw source fibers, as well as the fd-nirs source and three detection bundles (fd source-detectors separations of . , . , . cm) are inserted in the lower plate, while . mm detector fiber bundles with a degree bent end are mounted into the upper plate to collect light transmitted through the breast and deliver it to the cw detectors. both the upper and the lower fiber arrays cover an approximately x cm half elliptical area. the fd source power at the probe is ~ mw, while the cw source fibers deliver ~ mw. a pressure mapping system (tekscan i-scan) with a tekscan flat ”x ” x element sensor is mounted on the lower fixed plate, and is used to monitor the breast contact patch and spatial distribution of forces during the optical measurements. fibers in the lower plate are aligned with the transparent windows between the tekscan sensor rows and columns to allow simultaneous optical imaging and pressure monitoring. as described in detail in reference [ ], data is acquired continuously, and operation is controlled by a personal computer running custom software that ensures synchronization of the various optical and mechanical components. figure (a) shows the dynamic optical imaging setup as mounted on a cart that can be wheeled into an examination room, while fig. (b) offers a detail view of the compression and fiber probe sub-assembly. figure (c) illustrates the compression/release protocol and the timing of data acquisition by each optical sub-system. each breast is scanned in turn and three compression cycles are executed. the fd acquisition is active while the upper plate moves down to apply compression and for the first seconds of the steady compression period, followed by a minute cw acquisition and a final second fd measurement before compression is released. the breast tissue is allowed to relax for second between repeated compressions. . therapy monitoring pilot clinical trial protocol all measurements were conducted under a protocol approved by the dana farber/harvard cancer center institutional review board (irb) and registered in the national clinical trials registry (nct ). all patients involved in the study signed an informed consent form including consent to participate in the study and to publish the anonymized data. optical vol. , no. | feb | biomedical optics express assessment of the hbo, hbr, hbt and so response to compression at pre-treatment, day , and optionally at day and every other cycle during treatment was performed. the patients were women between to years old (median years old) with documented invasive breast cancer. candidates with breast implants, open wounds on the breast, or breast biopsies within the previous days were excluded. the tumor size ranged from . to . cm, with an average of . cm and a standard deviation of . cm. optional scans were also offered during days - of first cycle seeking to obtain finer grained information but logistical concerns limited subject interest in these scans. the response to treatment was assessed based on the reduction in the longest lesion diameter between size seen in the pre-treatment imaging scans and the size reported in the final pathology report after surgery. following the approach of cerussi et al. [ ], we considered a % reduction as the threshold for calling a subject a responder. we also recorded pathological complete responses and near-complete responses (> % reduction) as well, but since we did not achieve statistical significance with respect to these levels of response, we focused our analysis on the responder/non-responder dichotomy defined above. . optical image reconstruction and analysis procedures we use finite element modeling of light propagation in tissue, on a d mesh generated from breast contact pressure image. a dual-mesh scheme, a forward denser mesh for diffusion modeling and a separate coarser reconstruction mesh to represent the medium optical properties were used for improved computation efficiency. hemoglobin concentration values are reconstructed by solving a regularized nonlinear optimization problem using gauss- newton iterations [ ]. since the frequency domain measurements are done at a single location, and there are unavoidable shifts of the breasts between measurement sessions, we only used the frequency domain-derived absolute optical properties to provide an approximate baseline for the calculation of the starting hemoglobin oxygen saturation, baseline that is needed for scaling so values even when only changes are monitored. the rest of our image processing and analysis was based on relative reconstructions derived from the evolution of the cw optical signals during the measurement period. to quantify tumor and normal tissue properties, we used information from both clinical mri/x-ray scans and optical image features to define corresponding regions of interest (rois), as described in detail in ref [ ]. the shape and size of these rois were kept the same for all patient visits, but their absolute location was adjusted to maintain their relationship to the breast boundary as derived from the tekscan pressure map. . statistical analysis each patient had a pre-treatment scan, as well as a day and an optional day scan using the dtobi system. we monitored the tumor vs. normal differential hemodynamic compression response at these three treatment points during therapy and we correlated our measurements to the degree of response. as described above, we used a binary classification of responders (> % reduction in tumor diameter) and non-responders (< % reduction in tumor diameter). in the previous study, we showed that at day (pre-treatment scan), there are differences in hemodynamic properties between tumor region and the surrounding healthy tissue during dynamic compression of the tissue [ ] and these differences are statistically significant. in order to find out if monitoring these differences over the course of nact can help in differentiating the responders vs. non-responders to the nact, we executed the same protocol to monitor the changes in hemodynamic properties at day and into the nact. we then compared the compression response of the two independent hemodynamic parameters, hbt and so , between the responder and non-responder groups. we used a two- tailed, paired, t-test between the corresponding values of all optical parameters in the tumor and normal rois across the responder and non-responder groups (normality of the data at the % confidence level was verified using the jarque-bera test as implemented by the matlab jbtest function). the means of hemodynamic parameters (Δhbt and Δso ) between normal vol. , no. | feb | biomedical optics express and tumor region of the breast were tested at different time points of each cycle between responders and non-responders. the t-test was also performed on t-n metric, which is the difference in a given hemodynamic parameter between the tumor and normal region and is calculated at all treatment time points, i.e. day , day and day through nact. statistical comparisons were made using paired two-tailed t-tests at . level of significance. . results of total patients accrued, subjects were not included for the following reasons: measurements taken on the first three subjects could not be used because of an error in the data acquisition software that corrupted the data; could not tolerate the compression, did not come back for follow-up scans; subjects had diffuse, multi-focal or excessively large lesions (not possible to establish a healthy tissue reference); and for instrumentation related reasons (tumor not in the field of view in cases, excessive alignment error between scans in one case, and data quality issues in cases). here we report results from the remaining subjects, of whom also came back for day scans. table shows the patient demographic information, treatment data, and their degree of response to chemotherapy (assessed post- treatment based on the pathology report). table . patient demographic and treatment data. patie nt no. tum or side ag e menopau sal status lesion size (cm) tumor subtypes nac treatment degree of shrinka ge respon se catego ry l pre . er + ,pr + ,her + paclitaxel/herceptin lapatinib % nr r post . er-,pr- ,her + paclitaxel/trastuzuma b ~ % near pcr l pre . er + ,pr + ,her + paclitaxel/trastuzuma b lapatinib % pr r pre . er + ,pr + ,her - paclitaxel/bevacizum ab doxorubicin/ cyclophosphamide % nr r pre . er-,pr- ,her - paclitaxel/carbo/avas tin- doxorubicin/ cyclophosphamide % nr r pre . er + ,pr- ,her + paclitaxel/trastuzuma b/ lapatinib % pcr l post . er-,pr- ,her + paclitaxel/herceptin % pcr r pre . er-,pr- ,her - cisplatin/paclitaxel/n ovel pi k pathway inhibitor % pcr r pre . er-,pr- ,her - pactilaxel/cisplatin /rad % nr l post . er + ,pr + ,her - dose dense doxorubicin/ cyclophosphamide- paclitaxel % nr r post . er-,pr- ,her - dose dense doxorubicin/ cyclophosphamide- paclitaxel − % nr l pre . er + ,pr + ,her - doxorubicin/ cyclophosphamide − % nr r pre . er-,pr- ,her - dose dense doxorubicin/ cyclophosphamide- paclitaxel % pr pcr: pathologic complete response; near pcr: nearly complete pathologic response (> % shrinkage) pr: partial response (> % shrinkage) – pcr, near pcr and pr form the responders group; nr: no response (< % shrinkage). vol. , no. | feb | biomedical optics express in fig. , the measurement of force and corresponding changes in total hemoglobin concentration (Δhbt) and hemoglobin oxygen saturation (Δso ) are presented for one of the patients at the baseline measurement (day ). there is a clear difference in time courses of Δhbt and Δso during compression between tumor (t) and normal (n) tissue at day . the fig. . a) strain gauge force data for the entire measurement on the tumor breast; blue areas highlight the three main compression periods; b,c) hbt/so variation vs. initial state for the tumor (solid) and normal (dashed) rois over the three compression cycles (black, green, red for cycles , , and , respectively) tumor roi timecourse is shown as dotted lines (colors indicate the compression cycle), while the normal roi is shown as solid lines. although there is significant variation among the compression cycles, in all cases the tumor roi shows a notable hbt decrease followed by a limited blood volume recovery, whereas the normal roi has a notable increasing trend from to sec. for so the differential relationship is similar; while both rois show a decrease, a stronger decrease is observed in the tumor area. figure shows that optical measurements can detect the difference in the compression induced variation of hemodynamic parameters (hbt and so ) in tumor vs. normal tissue. group averaged changes in hbt and so in the tumor (blue lines) and normal tissue (red lines) prior to treatment (baseline) and during the treatment (day and day ) are presented in figs. and , respectively. based on the differential compression induced changes in hbt and so , the contrast between normal (n) and tumor (t) increases somewhat at day and more noticeably at day in non-responders to nact. however, in responders, this contrast between tumor and normal tissue decreases during the therapy (partially at day ) and almost completely disappears by day . Δso shows a similar trend between responders and non- responders during the course of nact. recordings across the three compression cycles are substantially similar. roi average values were compared between the non-responder and responder groups at three levels. first, we compared the compression-induced change in both hbt and so in tumor and normal tissues, respectively, between groups. next we computed the differential change in tumor vs. normal tissue and compared these differences between groups. finally, we further computed the variation in the tumor vs. normal differential compression response at day and day vs. pre-treatment, respectively as a measure of the response to therapy. we looked at these metrics at three timepoints during the compression period (t = , , and s) and across the three repetitions of the compression procedure acquired on each measurement day. tables and summarize the p-values resulting from the t-tests of statistical significance of the differences in the three types of metrics described above between the responder and non-responder groups (note that the results for day and day are based on patients, of which are non-responders and are responders, while the results for day are based on patients, of which are non-responders and of which are responders). vol. , no. | feb | biomedical optics express as suggested by fig. and detailed in table , at day , the amounts of compression induced changes in hbt in the tumor areas are significantly smaller in responders vs. non- responders for the nd and rd compression cycles at all timepoints (t = , , and s), as well as at the midpoint (t = s) of the first compression cycle. similar characteristics are noted for the changes in so in the tumor areas. additionally, compression induced changes in so fig. . group averaged compression induced changes in Δhbt (μm) for responders and non- responders, respectively, within the tumor (red lines) and normal (blue lines) regions of the breast due to compression over the course of nact ( subjects for day and day , and subjects for day ). error bars show standard error. vol. , no. | feb | biomedical optics express in the healthy tissue are significantly larger at the pre-treatment scan during the late (t = and s) nd and all of the rd compression cycle for the responders vs. non-responders. proceeding with the analysis, table shows the statistical analysis of the correlation of the differential compression response between tumor and normal areas. we note that at day , due to the apparent “normalization” of the tumor compression response, the tumor vs. normal difference in the hbt compression response is significantly smaller in the responders vs. non-responders for the middle (t = s) of the nd and all of the rd compression cycle. further, the same characteristics are seen for the middle and late rd compression cycle at day fig. . group averaged compression induced changes in Δso (μm) for responders and non- responders, respectively, within the tumor (red lines) and normal (blue lines) regions of the breast due to compression over the course of nact ( subjects for day and day , and subjects for day ). error bars show standard error. with near significance. so metrics behave similarly to hbt metrics, with the differences between tumor and normal tissues being significantly smaller at day for the responders vs. non-responders, reaching statistical significance for all cycles and timepoints except early (t = s) in the st cycle. vol. , no. | feb | biomedical optics express table . p-values of t-test of the Δhbt and Δso during compression compared between responders and non-responders. (t = tumor tissue, n = normal tissue) Δhbt day day day cycle cycle cycle cycle cycle cycle cycle cycle cycle t n t n t n t n t n t n t n t n t n s . . . . . . . . . . . . . . < . . < . . s . . . . . . . . . . . . . . < . . . . s . . . . . . . . . . . . . . < . . < . . day day day Δso cycle cycle cycle cycle cycle cycle cycle cycle cycle t n t n t n t n t n t n t n t n t n s . . . . . . . . . . . . . . < . . < . . s . . . . . . . . . . . . . . < . . . . s . . . . . . . . . . . . . . < . . . . table . p-values of t-test on the differences in Δhbt and Δso during compression between tumor and normal areas in the same breast in responders vs. non-responders across timepoints, compression cycles and treatment points. Δhbt day day day cycle cycle cycle cycle cycle cycle cycle cycle cycle t-n t-n t-n t-n t-n t-n t-n t-n t-n s . . . . . . . . . s . . . . . . . . . s . . . . . . . . . Δso day day day cycle cycle cycle cycle cycle cycle cycle cycle cycle t-n t-n t-n t-n t-n t-n t-n t-n t-n s . . . . . . . < . < . s . . . . . . . < . . s . . . . . . . < . < . to assess the predictive performance of the compression response metrics, we developed a simple classification scheme based on the amount of change due to compression in the tumor and normal tissues, respectively, as well as based on the difference in compression response between tumor and normal tissues. tables and report the areas under the receiver operating characteristic curves (roc) for these predictions. it is generally seen that by day responders can be differentiated from non-responders quite well using either hbt or so based metrics. more importantly, even at day , the eventual response to therapy can be predicted based on the differential tumor vs. normal hbt response for the later timepoints ( and s) with sensitivities and specificities as good as %, %, % and %, %, %, respectively across compression cycles at s (or s), s, and s, respectively. the roc curves for these best case predictions are shown in fig. . fig. . receiver operating characteristic (roc) curves for predicting whether a patient will be a responder or non-responder based on the differential change in hbt between the tumor and normal areas at day , for t = s, cycle , t = s, cycle and t = s, cycle . vol. , no. | feb | biomedical optics express . discussion the group averaged time courses presented in figs. and illustrate the compression- induced changes in total hemoglobin and hemoglobin oxygen saturation. the contrast initially present in the tumor vs. normal tissue behavior lessens/disappears in responders, but is maintained in non-responders. these results suggest that dynamic optical measurements can detect chemotherapy-induced differences in the compression-induced variation of hemodynamic parameters (hbt and so ) in tumors and normal tissue. of note, generally better results are seen for the nd and rd compression cycle, indicating some level of tissue “pre-conditioning” is needed for reliable measurements. table . areas under the roc curve (auc) for predicting response vs. non-response using Δhbt and Δso change thresholds during compression. (t = tumor tissue, n = normal tissue). auc> . highlighted in bold. Δhbt day day day cycle cycle cycle cycle cycle cycle cycle cycle cycle t n t n t n t n t n t n t n t n t n s . . . . . . . . . . . . . . . . . . s . . . . . . . . . . . . . . . . . . s . . . . . . . . . . . . . . . . . . Δso day day day cycle cycle cycle cycle cycle cycle cycle cycle cycle t n t n t n t n t n t n t n t n t n s . . . . . . . . . . . . . . . . . . s . . . . . . . . . . . . . . . . . . s . . . . . . . . . . . . . . . . . . table . areas under the roc curve (auc) for predicting response vs. non-response using the differences in Δhbt and Δso during compression between tumor and normal areas in the same breast. auc> . highlighted in bold. Δhbt day day day cycle cycle cycle cycle cycle cycle cycle cycle cycle t-n t-n t-n t-n t-n t-n t-n t-n t-n s . . . . . . . . . s . . . . . . . . . s . . . . . . . . . Δso day day day cycle cycle cycle cycle cycle cycle cycle cycle cycle t-n t-n t-n t-n t-n t-n t-n t-n t-n s . . . . . . . . . s . . . . . . . . . s . . . . . . . . . the disparity in tumor vs. normal compression response may be driven by the increased stiffness and longer viscoelastic relaxation time of the tumor tissue [ , ]. as we hold the breast under compression, the stiffer tumor may be bearing a disproportionate amount of the load, “shielding” the normal surrounding tissue. the convergence of the compression response Δhbt/Δso time-courses between tumor and normal areas at day and even more so at day may be related to the “normalization” of the tumor that has been observed at the microscopic level [ – ]. further, evaluation of nact using ultrasound elastography in patients with locally advanced breast cancer showed that as tumors begin to respond to the nact, their structure and biomechanical properties start to change and become less stiff in responding patients [ ]. vol. , no. | feb | biomedical optics express our qualitative observations are partially reflected by the results of the statistical analysis. we note the statistically significant difference in compression response of the tumor tissue developing by day , as well as the statistically significant decrease in the difference between the behavior of tumor and normal tissue from the same breast for responders also seen by day . however, these results did not hold up when the patients were classified in complete vs. less than complete responders. these data suggest that a follow-up study with a larger sample size and perhaps additional intermediate time-points, such as day is warranted to explore the full potential of this technique. this study experienced several limitations, such as the pilot nature, the small number of patients who allowed the optional day scan, the heterogeneity of the chemotherapy regimens used, the heterogeneity of tumor subtypes with a preponderance of her positive lesions, that often have better responses to neoadjuvant therapy than other subtypes, and the binary cut off of % shrinkage as the responder/non-responder definition. we should note that there may be more clinically meaningful predictive pathological systems to determine response than the % shrinkage used here. among these are achieving pathological complete response vs. not achieving it, or achieving a final residual cancer burden (rcb) of / vs. / . future studies will include focusing on patients with more homogenous subtypes and who receive more consistent homogeneous treatments. despite limited statistical significance, some predictive ability appears to have been achieved, thus the results of this pilot study are encouraging and suggest dynamic optical imaging can be a useful addition to the range of optical breast imaging techniques. static imaging techniques that are well validated in the field could be combined with compression response metrics derived from dtobi data to offer optical imaging tools for monitoring the treatment and predicting the therapy outcome during the early stages of nact. . conclusion these initial results suggest that dynamic optical breast imaging can detect changes due to treatment and have predictive value for the treatment outcome. dtobi can show the difference in hemodynamic response to compression between tumor and normal tissue and demonstrates the feasibility of using dynamic optical breast tomography for neoadjuvant chemotherapy monitoring. results in a small cohort of patients indicate that the difference in tumor vs. normal response to compression remains largely unchanged in non-responders, while tumor tissue response converges towards normal tissue in responders. dynamic optical breast imaging may thus, in conjunction with more established static optical imaging techniques, become a convenient, non-invasive and portable tool for chemotherapy monitoring and outcome prediction. acknowledgments this work was supported by nih grants r eb , r ca , r ca and the susan g. komen for the cure foundation grant kg . the authors would like to thank ms. nancy nagda for coordinating patient scheduling, the staff of the mgh center for breast cancer for their support, and the patients who participated in this project. vol. , no. | feb | biomedical optics express [pdf] mouse models of rett syndrome: from behavioural phenotyping to preclinical evaluation of new therapeutic approaches | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /fbp. b e c corpus id: mouse models of rett syndrome: from behavioural phenotyping to preclinical evaluation of new therapeutic approaches @article{ricceri mousemo, title={mouse models of rett syndrome: from behavioural phenotyping to preclinical evaluation of new therapeutic approaches}, author={l. ricceri and b. de filippis and g. laviola}, journal={behavioural pharmacology}, year={ }, volume={ }, pages={ - } } 	l. ricceri, b. de filippis, g. laviola 	published 	medicine 	behavioural pharmacology rett syndrome (rtt) is a neurodevelopmental disorder, primarily affecting girls. rtt causes severe cognitive, social, motor and physiological impairments and no cure currently exists. the discovery of a monogenic origin for rtt and the subsequent generation of rtt mouse models provided a major breakthrough for rtt research. although the characterization of these mutant mice is far from complete, they recapitulate several rtt symptoms. this review provides an overview of the behavioural domains… expand view on wolters kluwer rettsearch.org save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations results citations view all topics from this paper 	rett syndrome 	neurodevelopmental disorders 	phenotype determination 	evaluation 	pharmacology citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency rett syndrome treatment in mouse models: searching for effective targets and strategies 	l. ricceri, b. d. filippis, g. laviola 	biology, medicine 	neuropharmacology 	 	 save alert research feed loss of mecp in the rat models regression, impaired sociability and transcriptional deficits of rett syndrome 	s. veeraragavan, y. wan, + authors r. samaco 	biology, medicine 	human molecular genetics 	 	 	pdf 	view excerpt save alert research feed the complexity of rett syndrome models: primary fibroblasts as a disease-in-a-dish reliable approach 	v. cordone, alessandra pecorelli, f. amicarelli, j. hayek, g. valacchi 	medicine 	 	 save alert research feed experimental models of rett syndrome based on mecp dysfunction 	g. calfa, a. percy, l. pozzo-miller 	biology, medicine 	experimental biology and medicine 	 	 	 save alert research feed deficient purposeful use of forepaws in female mice modelling rett syndrome 	b. de filippis, m. musto, l. altabella, e. romano, r. canese, g. laviola 	psychology, medicine 	neural plasticity 	 	 	pdf save alert research feed analysis of the serotonergic system in a mouse model of rett syndrome reveals unusual upregulation of serotonin receptor b 	s. vogelgesang, sabine niebert, + authors m. niebert 	biology, medicine 	front. mol. neurosci. 	 	 	 	view excerpt, cites background save alert research feed rett syndrome and mecp 	v. liyanage, m. rastegar 	biology, medicine 	neuromolecular medicine 	 	 	 	view excerpt, cites methods save alert research feed long-lasting beneficial effects of central serotonin receptor stimulation in female mice modeling rett syndrome 	b. de filippis, v. chiodi, + authors g. laviola 	psychology, medicine 	front. behav. neurosci. 	 	 	 	view excerpts, cites 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model for rett syndrome 	n. a. stearns, l. r. schaevitz, h. bowling, n. nag, j. berger-sweeney 	psychology, medicine 	neuroscience 	 	 	highly influential 	pdf 	view excerpts, references background and methods save alert research feed mouse behavioral assays relevant to the symptoms of autism * 	j. crawley 	psychology, medicine 	brain pathology 	 	 	view excerpt, references background save alert research feed the story of rett syndrome: from clinic to neurobiology 	m. chahrour, h. zoghbi 	biology, medicine 	neuron 	 	 , 	highly influential 	pdf 	view excerpts, references background save alert research feed cell-specific expression of wild-type mecp in mouse models of rett syndrome yields insight about pathogenesis. 	matías alvarez-saavedra, m. sáez, d. kang, h. zoghbi, j. young 	biology, medicine 	human molecular genetics 	 	 	pdf 	view excerpt, references background save alert research feed advances in behavioral genetics: mouse models of autism 	s. s. moy, j. j. nadler 	psychology, medicine 	molecular psychiatry 	 	 	pdf 	view excerpts, references background save alert research feed treatment with desipramine improves breathing and survival in a mouse model for rett syndrome 	j. roux, e. dura, a. moncla, j. mancini, l. villard 	medicine 	the european journal of neuroscience 	 	 	pdf 	view excerpts, references results and background save alert research feed a mouse mecp -null mutation causes neurological symptoms that mimic rett syndrome 	j. guy, b. hendrich, m. holmes, j. martin, a. bird 	biology, medicine 	nature genetics 	 	 , 	highly influential 	pdf 	view excerpts, references methods and background save alert research feed comparative study of brain morphology in mecp mutant mouse models of rett syndrome 	nadia p. belichenko, p. belichenko, h. li, w. mobley, u. francke 	biology, medicine 	the journal of comparative neurology 	 	 	pdf 	view excerpt, references results save alert research feed mild overexpression of mecp causes a progressive neurological disorder in mice. 	a. l. collins, j. levenson, + authors h. zoghbi 	medicine, biology 	human molecular genetics 	 	 	pdf 	view excerpts, references background save alert research feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue evidence-based practice in occupational therapy occupational therapy trials hong kong journal of occupational therapy hkjot ; : – evidence-based practice in occupational therapy eddie ka hang leung evidence-based practice (ebp) was introduced to the occupational therapy (ot) profession to aid in the development of clinical services and to substantiate daily ot practices. it refers to the conscientious, explicit and judicious use of the current best evidence in making decisions about the care of individual clients. in this article, a systematic and critical review of published randomized controlled trials in ot was performed in order to critically appraise the current level of evidence provided with respect to ebp and provide recommendations accordingly. searches of medline express and the cochrane collaboration library databases of the english-language literature with keywords “randomized clinical trial”, “controlled clinical trial” and “clinical trial” for publication type, and “occupational therapy” in any field were made. forty-six randomized, controlled trial publications of ot treatment were identified, and two independent reviewers assessed their quality according to a preset protocol. among the trials, were classified as average or above. the remaining trials were graded as poor quality. about % of the trials studied geriatric, paediatric or stroke patients. these areas had higher evidence grades. in terms of the quality of design, most studies adequately described the measurement methods, duration of therapy and group assignment, but handling of blinding method and sample size calculation were poorly described. in this systematic and critical review, i conclud that there were far too few randomized, controlled ot trials. the quality of one third of the trials was low and there were insufficiencies in their reporting as well. therefore, more properly designed and conducted randomized controlled clinical trials of ot treatment with proper reporting based on reference to the consort statement are necessary. key words: evidence-based practice • trial • occupational therapy occupational therapy department, rehabilitation building, kowloon, hong kong. reprint requests and correspondence to: eddie ka hang leung, occupational therapy department, /f, rehabilitation building, kowloon hospital, a, argyle street, kowloon, hong kong. e-mail: eddleung@hutchcity.com introduction in the continuing development of occupational therapy (ot) clinical services, practitioners must locate the most current facts to substantiate daily practices. for this reason, evidence- based practice (ebp) was introduced to the ot profession. ebp refers to the conscientious, explicit and judicious use of the current best evidence in making decisions about the care of individual clients (sackett et al., ). ebp can be established in several ways including conducting research studies such as case control studies, cohort studies, and randomized, controlled clinical trials. additionally, systemic review of publications in an area of interest followed by meta-analysis provides another way to substantiate ebp. an overview of randomized, controlled ot trials was performed in order to identify and critically appraise the current body of published ot research. evidence-based practice ebp is helpful for the development and implementation of disease management programmes and clinical practice guidelines because it embodies conscientious, explicit and judicious use of the most current, best available evidence in eddie, ka hang leung hkjot ; hong kong journal of occupational therapy caring for patients. how can we practitioners ensure ebp? it can be assured by integrating individual clinical expertise with the best available external clinical evidence obtained by systemic research. by individual clinical expertise, we mean the proficiency and judgement that individual clinicians acquire through clinical experience and professional practices. on the other hand, to obtain the best available external clinical evidence, we can investigate the efficacy of present practice. practically, the identification of external resources of evidence is followed by a systematic review of the identified publications, which forms the basis for a meta-analysis (lauder & kumana, ). alternatively, we can obtain evidence through a series of research studies, including retrospective cohort studies, case control studies and prospective confirmatory studies e.g. randomized, controlled trials (chappell, ). each type of clinical research is important under different situations. nonetheless, it is commonly believed that prospective, randomized, controlled trials (with blinding when appropriate) can provide the most accurate evidence about the efficacy and safety of study treatments (chappell, ). occupational therapy and evidence-based practice techniques and devices in ot are developing relatively faster than before in order to fulfil the increasing demand for quality services. recently, dubolouloz ( ) launched a survey on occupational therapists’ perceptions of ebp. the ot practitioners were asking “why should i use this kind of activity to treat my patients?” or “what is the rationale of doing this?” i believe these questions need to be answered appropriately. moreover, there were conflicting conclusions on the effectiveness of an ot treatment or a specific ot treatment modality (ottenbacher & maas, ; severens et al., ; ballinger et al., ). under this situation, ebp can help to address these questions by a systematic and critical review of the best available evidence. in the process of ebp, the search for external evidence is of equal importance to actual clinical studies. meta-analysis is a statistical technique to combine results from different studies of a similar type of intervention in order to produce a more reliable conclusion on the efficacy or safety of the intervention. hence, to conduct meta-analysis of existing published studies is one way to consolidate existing evidence to produce more powerful conclusions (sackett, ). nonetheless, our observation of a sample of meta-analyses of ot studies indicates that their quality was often insufficient. for example, meta- analysis of research on sensory integration treatment by vargas & camilli ( ) considered studies other than randomized, controlled trials, which is undesirable for the objective of evaluating the best evidence of the effect of ot on patients. we know that randomized controlled trials provide the best evidence for ebp over other study types. one of the main reasons for the lack of good meta-analyses is, perhaps, the diversity among ot treatments focusing on a wide variety of outcome measures and therapeutic areas that make the meta- analyses more difficult. it is, therefore, worthwhile to conduct a systematic and critical review of existing research on ot in order to thoroughly understand the existing quality of research on ot and the diversity of different areas of applications considered. this will help to standardize future research on ot and draw attention to situations in which meta-analyses can be performed in the future. for assessing the quality of randomized controlled trials, the “checklist for assessing randomised controlled trials” is useful and has been previously used for this purpose (karlberg et al., ). it rates the quality of a randomized, controlled trial publication on a -point scale ( – ) according to subject selection, trial design, data collection, data analysis, treatment comparisons and reporting of results and conclusions. this checklist is, therefore, accepted as a comprehensive review tool for the evaluation of published studies on ot. research aims the aims of this article are: • to make a systematic and critical overview of published, randomized, controlled trials on ot treatments. • to describe the common strengths and weaknesses of randomized, controlled trials on ot. • to examine the strength of evidence provided by randomized, controlled trials on ot. • to recommend areas of ot practice that require more support by ebp. occupational therapy search before the start of the ot search, sets of inclusion and exclusion criteria for the identification of ot publications were identified and accepted by a panel comprised of one occupational therapist (m.med.sc. degree candidate) and two members of the staff at the clinical trials centre, the university of hong kong (one an m.d., ph.d.; the other a ph.d. in statistics). inclusion criteria . a clinical trial focused on evaluating an ot intervention . a randomized clinical trial occupational therapy trials hong kong journal of occupational therapy . a controlled clinical trial exclusion criteria . a non-randomized study . a study not evaluating an ot intervention . publications written in a language other than english. identification of publications on ot was initiated by searching through two electronic databases: medline express and the cochrane collaboration library (cochrane library). the search covered databases from january to february . the following keywords were used in searching the two electronic databases: • randomized-clinical-trial, controlled- clinical-trial, and clinical-trial in publication type. • clin*, trial*, and random* in any field where “*” is a wildcard character representing any string • occupational therapy in any field. the publications identified in the two electronic databases were compared and combined. the search was extended by contacting academic staff specializing in ot at the hong kong polytechnic university (polyu), through internet and email. the abstracts of all collected publications were studied and coded in accordance with the pre-defined selection criteria. those abstracts not satisfying the inclusion criteria, or those that met one or more of the exclusion criteria, were excluded from the subsequent detailed critical review. the full papers on the selected studies were analysed, and their study design, sample size, results, conclusions and treatment modality were summarized into tables. review process all selected publications of ot clinical trials were reviewed for their strengths and weaknesses. two persons reviewed the selected publications in a standardized manner. the two reviewers used the “checklist for assessing clinical trials” (karlberg et al., ) (appendix) to assess the study design, statistical analysis and report of all identified published trials. after reviewing each item in the checklist, an overall quality score ranging between and was given for each trial: • “ ” for a high-quality study (methodologically strong without important weakness in design or results). • “ ” for a study of reasonable quality (some weakness in study design or results). • “ ” for a weak study (definite shortcomings in design or results). • “ ” for a poor study (serious weakness in design or results). each publication was graded by each of the two reviewers independently. after completing the review of all trial publications, the quality grades of the two reviewers were compared and any discrepancies were discussed and resolved. results search results the adopted search key words and the resulting summary of the medline search are shown in table . a total of publications of randomized controlled trials on ot dated from january to february were identified. the same set table . medline search steps for randomized controlled trials on occupational therapy no. records request , randomized-controlled-trial in pt , controlled-clinical-trial in pt , randomized-controlled-trials , clinical-trial in pt , explode clinical-trials/ all subheadings , , clin* , trial* , (clin* near trial*) in ti , , clin* , trial* , (clin* near trial*) in ab , random* , # or # or # or # or # or # or # or # , occupational , , therapy , occupational therapy # and # , # and # # and # eddie, ka hang leung hkjot ; hong kong journal of occupational therapy of key words was also used in searching the cochrane library database, and exactly the same number of publications was found. titles and authors of the two sets of publications from medline and the cochrane library, respectively, were then printed and compared. no discrepancies were found. on the other hand, academic staff specializing in ot at polyu were contacted by letter for information on publications of ot trials, and eight of them ( . %) replied. no additional complete ot publications were found, based on their responses. abstracts of the identified publications were then studied and screened by the author, in accordance with the pre- defined selection criteria described in method section. most publications reported non-randomized trials or were not primarily focused on an ot programme. a few publications were meta-analyses or were not written in english. as a result, a total of publications were excluded. the study designs, sample sizes, results, conclusions, and treatment modalities of the full publications are summarized in table . quality grades of the identified publications the two reviewers with different backgrounds reviewed the ot trial publications independently, according to the standardised checklist (appendix). a quality score from zero to three was given to each publication based on its design, statistical analysis, and conclusions. the two reviewers gave the same scores on ( %) publications. the scores of the remaining publications differed by only one grade unit. the figure presents the graphical distribution of the quality scores. there were publications graded with a score of two or three, which constituted % of the selected ot trial publications. of the publications with a score of two or three, only ( %) had proper sample size calculations before the studies were conducted. blinding was also considered in publications ( %), one of which even considered a triple blinded design, i.e. the patients, investigators and trial statisticians were all blinded to the types of treatment administered to the patients. baseline comparisons were performed in publications ( %), and none of them revealed any significant baseline difference between the comparison groups. studies with a score of two or three also had proper handling of missing values. a total of publications ( %) adopted the intention to treat approach for all statistical analyses. regarding the types of treatments used for comparisons with ot treatments, there were publications that compared an ot treatment with another ot treatment and publications that compared an ot treatment with a non-ot treatment. all of the publications with a score of one lacked predetermined sample calculations and had no discussion of the adequacy of sample size. only six of the publications ( %) performed baseline comparisons. none of the publications considered blinding when it was appropriate, and none had properly handled missing values. table summarizes the key randomized clinical trial characteristics of all identified ot trial publications. of these, had a prospective parallel design. the other two had a cross-over design. sample size varied moderately among the trials. specifically, ( %) had more than study subjects, ( %) had between and study subjects and the remaining ( %) publications had fewer than study subjects. a total of publications ( %) reported a positive conclusion on the ot treatment efficacy, while publications ( %) reported a negative ot treatment effect. the remaining publications ( %) did not arrive at a conclusion on whether ot was better than the comparison treatment, or vice versa. there appeared to be a chronological order to the quality of the ot trials. in the s and s, there were more reported trials with a score of two or three, which constituted / ( %) and / ( %), respectively. from the sample size perspective, score trials averaged subjects, while score trials averaged subjects. score trials averaged only subjects. when the scores were compared for results and conclusions, / ( %) of score trials, / ( %) of score trials and / ( %) of score trials concluded with positive efficacy for ot treatments. a further observation was that all score trials had significant conclusions. therapeutic areas table presents a summary of the quality of the ot publications classified by therapeutic area and the domain of concerns such as ot core values. the therapeutic areas, in descending order of the number of studies, were geriatric, ( %), stroke ( %), core values ( %), paediatrics ( %), brain injuries ( %), rheumatoid arthritis ( %), psychiatry ( %), others ( %), parkinsonism ( %), and work rehabilitation ( %). the treatment modalities that varied the most among the publications were activity therapy, group intervention, preventive measures and assistive devices/ technology. the other treatment modalities usually referred to a specific treatment technique, such as sensory integration, neurodevelopmental treatment and memory training. discussion search for occupational therapy randomized, controlled trials i identified a total of publications on ot randomized controlled trials. after screening by predefined selection criteria, occupational therapy trials hong kong journal of occupational therapy t ab le : s u m m ar y of p u b li ca ti on s of r an d om iz ed c on tr ol le d t ri al s on o cc u p at io n al t h er ap y cl as si fi ed b y th er ap eu ti c ar ea t ri al n o /. a ut ho r y ea r t it le q ua li ty s ub je ct s r es ul ts s am pl e t re at m en t m od al it y c at eg or y sc or e si ze s tr o k e re h ab g re en b er g e t al . k in es th et ic b io fe ed b ac k : a tr ea tm en t m o d al it y f o r el b o w r an g e o f m o ti o n v p – e x er ci se t h er ap y in h em ip le g ia s tr o k e re h ab l o g an e t al . a r an d o m iz ed c o n tr o ll ed t ri al o f en h an ce d s o ci al o cc u p at io n al t h er ap y f o r p + a ss is ti v e d ev ic es st ro k e p at ie n ts s tr o k e re h ab d ru m m o n d e t al . a r an d o m iz ed c o n tr o ll ed t ri al o f le is u re r eh ab il it at io n a ft er s tr o k e p + l ei su re a ct iv it ie s s tr o k e re h ab jo n g b lo ed e t al . a n i n v es ti g at io n o f in v o lv em en t in l ei su re a ct iv it ie s af te r a st ro k e p – l ei su re t h er ap y s tr o k e re h ab c ar te r et a l. e ff ec ti v en es s o f co g n it iv e sk il l re m ed ia ti o n i n a cu te s tr o k e p at ie n ts p + c o g n it iv e th er ap y s tr o k e re h ab jo n g b lo ed e t al . s tr o k e re h ab il it at io n : se n so ri m o to r in te g ra ti v e tr ea tm en t v er su s fu n ct io n al p – s en so ry i n te g ra ti o n t re at m en t th er ap y s tr o k e re h ab w al k er e t al . o cc u p at io n al t h er ap y f o r st ro k e p at ie n ts n o t ad m it te d t o a h o sp it al : a p + h o m e th er ap y ra n d o m is ed c o n tr o ll ed t ri al s tr o k e re h ab c o rr e t al . o cc u p at io n al t h er ap y f o r st ro k e p at ie n ts a ft er h o sp it al d is ch ar g e – a p + h o m e th er ap y ra n d o m is ed c o n tr o ll ed t ri al g er ia tr ic s r at ch fo rd t h e ef fe ct iv en es s o f li fe r ev ie w r em in is ce n ce a ct iv it ie s o n d ep re ss io n v h – r em in is ce n ce t h er ap y an d s el f- es te em i n o ld er a d u lt s g er ia tr ic s w al li s et a l. r ea li ty o ri en ta ti o n t h er ap y – a c o n tr o ll ed t ri al p – r .o . p ro g ra m g er ia tr ic s n el so n e ff ec ts o f p ro je ct v er su s p ar al le l g ro u p s o n s o ci al i n te ra ct io n a n d v h – s o ci al g ro u p af fe ct iv e re sp o n se s in s en io r ci ti ze n s g er ia tr ic s l id d le e t al . c an o cc up at io na l th er ap y in te rv en tio n pl ay a p ar t in m ai nt ai ni ng i nd ep en de nc e h n s a ss is ti v e d ev ic es an d qu al it y of l if e in o ld er p eo pl e? a r an do m is ed c on tr ol le d tr ia l g er ia tr ic s r o b ic h au d e t al . e ff ic ac y o f se n so ry i n te g ra ti o n p ro g ra m m e o n b eh av io u rs o f in p at ie n ts p – s en so ry i n te g ra ti o n w it h d em en ti a th er ap y g er ia tr ic s c la rk e t al . o cc u p at io n al t h er ap y f o r in d ep en d en t- li v in g o ld er a d u lt s. a r an d o m iz ed v h + c om m un it y co n tr o ll ed t ri al p re v en ti v e th er ap y g er ia tr ic s t h ra lo w e t al . r em o ti v at io n f o r g er ia tr ic p at ie n ts . u si n g e le m en ta ry s ch o o l st u d en ts p n s r em o ti v at io n g ro u p th er ap y g er ia tr ic s c u m m in g e t al . h o m e v is it s b y a n o cc u p at io n al t h er ap is t fo r as se ss m en t an d p + f al l p re v en ti o n m o d if ic at io n o f en v ir o n m en ta l h az ar d s: a r an d o m iz ed t ri al o f fa ll s p re v en ti o n g er ia tr ic s c lo se e t al . p re ve nt io n of f al ls i n th e el de rl y tr ia l (p r o f e t ): a r an do m is ed c on tr ol le d tr ia l p + f al l p re v en ti o n g er ia tr ic s z is se lm an e t al . a p et t h er ap y i n te rv en ti o n w it h g er ia tr ic p sy ch ia tr y i n p at ie n ts p – p et t h er ap y * c o re v al u e m o rt o n e t al . a c o m p ar is o n o f p er fo rm an ce m ea su re s o f an a d d ed -p u rp o se t as k v er su s v h – a ct iv it y t h er ap y a si n g le p u rp o se t as k f o r u p p er e x tr em it ie s * c o re v al u e l am o re e t al . t h e ef fe ct s o f o p ti o n s o n p er fo rm an ce o f an a rt p ro je ct i n a d u lt s w it h p + a ct iv it y t h er ap y m en ta l d is ab il it ie s * c o re v al u e s te in b ec k p u rp o se fu l ac ti v it y a n d p er fo rm an ce v h + a ct iv it y p ro g ra m * c o re v al u e z im m er er e t al . o cc u p at io n al ly -e m b ed d ed e x er ci se v er su s ro te e x er ci se : a ch o ic e b et w ee n h – a ct iv it y t h er ap y o cc u p at io n al f o rm s b y e ld er ly n u rs in g h o m e re si d en ts * c o re v al u e n el so n e t al . t h e ef fe ct s o f o cc u p at io n al ly e m b ed d ed e x er ci se o n b il at er al ly a ss is te d p + a ct iv it y t h er ap y su p in at io n i n p er so n s w it h h em ip le g ia * c o re v al u e k re m er e t al . e ff ec ts o f se le ct ed a ct iv it ie s o n a ff ec ti v e m ea n in g i n p sy ch ia tr ic p at ie n ts p – a ct iv it y t h er ap y eddie, ka hang leung hkjot ; hong kong journal of occupational therapy t ri al n o /. a ut ho r y ea r t it le q ua li ty s ub je ct s r es ul ts s am pl e t re at m en t m od al it y c at eg or y sc or e si ze * c o re v al u e f er gu so n & t ro m bl y t h e ef fe ct o f ad d ed -p u rp o se a n d m ea n in g fu l o cc u p at io n o n m o to r le ar n in g v h + a ct iv it y t h er ap y p ae d ia tr ic s p o la ta jk o e t al . a c li n ic al t ri al o f th e p ro ce ss – o ri en te d t re at m en t ap p ro ac h f o r ch il d re n w it h p – p ro ce ss o ri en te d d ev el o p m en ta l co -o rd in at io n d is o rd er tr ea tm en t p ae d ia tr ic s p ar u sh e t al . t h e ef fi ca cy o f ea rl y p re v en ti o n p ro g ra m m e fa ci li ta te d b y o cc u p at io n al h + p re v en ti o n p ro g ra m th er ap is t: a f o ll o w -u p s tu d y p ae d ia tr ic s g ae b le r et a l. t h e ef fe ct s o f p re fe ed in g s ti m u la ti o n p ro g ra m o n p re te rm i n fa n ts p – p re fe ed in g p ro g ra m p ae d ia tr ic s e d el so n e t al . b eh av io u ra l an d p h y si o lo g ic al e ff ec ts o f d ee p p re ss u re o n c h il d re n w it h p n s a u ti sm t re at m en t au ti sm : a p il o t ev al u at in g t h e ef fi ca cy o f g ra n d in ’s h u g m ac h in e te ch ni qu e p ae d ia tr ic s l aw e t al . a c o m p ar is o n o f in te n si v e n eu ro d ev el o p m en ta l th er ap y p lu s ca st in g a n d a p – n eu ro de ve lo pm en ta l re g u la r o cc u p at io n al t h er ap y p ro g ra m m e fo r ch il d re n w it h c er eb ra l p al sy th er ap y p ae d ia tr ic s e x n er t h e zo n e o f p ro x im al d ev el o p m en t in i n -h an d m an ip u la ti o n s k il ls o f n o n h n s c u es v ar ie ty d y sf u n ct io n al - an d -y ea r- o ld c h il d re n r h eu m at o i- g er b er e t al . p at ie n t ed u ca ti o n p ro g ra m t o t ea ch e n er g y c o n se rv at io n b eh av io rs p n s e d u ca ti o n p ro g ra m d o lo g y to p at ie n ts w it h r h eu m at o id a rt h ri ti s r h eu m at o i- v an d eu se n & t h e ef fi ca cy o f th e r o m d an ce p ro g ra m f o r ad u lt s p + r o m p ro g ra m d o lo g y h ar lo w w it h r h eu m at o id a rt h ri ti s r h eu m at o i- h el ew a et a l. e ff ec ts o f o cc u p at io n al t h er ap y h o m e se rv ic e o n p at ie n ts w it h p + r .a . m an ag em en t d o lo g y rh eu m at o id a rt h ri ti s r h eu m at o i- p ag n o tt a et a l. t h e ef fe ct o f a st at ic w ri st o rt h o si s o n h an d f u n ct io n i n i n d iv id u al s w it h p + s pl in ta ge d o lo g y rh eu m at o id a rt h ri ti s b ra in i n ju ry s o d er b ac k t h e ef fe ct iv en es s o f tr ai n in g i n te ll ec tu al f u n ct io n s in a d u lt s w it h a cq u ir ed p n s c o g n it iv e th er ap y b ra in d am ag e b ra in i n ju ry n ei st ad t o cc u p at io n al t h er ap y t re at m en ts f o r co n st ru ct io n al d ef ic it s p n s c o g n it iv e g ro u p b ra in i n ju ry n ei st ad t t h e ef fe ct s o f d if fe re n t tr ea tm en t ac ti v it ie s o n f u n ct io n al f in e m o to r p n s f u n ct io n al t as k co o rd in at io n i n a d u lt s w it h b ra in i n ju ry b ra in i n ju ry d ir et te e t al . c o m p ar is o n o f re m ed ia l an d c o m p en sa to ry i n te rv en ti o n s fo r ad u lt s p – r em ed ia l in te rv en tio n w it h a cq u ir ed b ra in i n ju ri es p sy ch ia tr y l ib er m an e t al . s k il ls t ra in in g v er su s p sy ch o so ci al o cc u p at io n al t h er ap y f o r p er so n s p + s k il ls t ra in in g g ro u p w it h p er si st en t sc h iz o p h re n ia p sy ch ia tr y k o p el o w ic z et a l. t ea ch in g p sy ch ia tr ic i n p at ie n ts t o r e- en te r th e co m m u n it y : a b ri ef p + s k il ls t ra in in g g ro u p m et h o d o f im p ro v in g t h e co n ti n u it y o f ca re p sy ch ia tr y d ec ar lo e t al . t h e ef fe ct iv en es s o f v er b al v er su s ac ti v it y g ro u p s in i m p ro v in g s el f p – s k il ls t ra in in g p er ce p ti o n s o f in te rp er so n al c o m m u n ic at io n s k il ls pr og ra m w o rk r eh ab d o rt ch i ii e t al . t h e ef fe ct s o f ed u ca ti o n o n h an d u se w it h i n d u st ri al w o rk er s in v h n s p re v en ti v e g ro u p re p et it iv e jo b s p ar k in so n is m g au th ie r et a l. t h e b en ef it s o f g ro u p o cc u p at io n al t h er ap y o f p at ie n ts w it h p ar k in so n ’s v p + g ro u p t h er ap y di se as e o th er s g li ck m an e t al . t h e ef fe ct o f sw it ch c o n tr o l si te o n c o m p u te r sk il ls o f in fa n ts a n d t o d d le rs h + c o m p u te r th er ap y o th er s c o o p er e t al . e lb o w j o in t re st ri ct io n : ef fe ct o n f u n ct io n al u p p er l im b m o ti o n d u ri n g v h – jo in t r o m p er fo rm an ce o f th re e fe ed in g a ct iv it ie s su bj ec ts : v h : v ol un ta ry h ea lth y, v p: v ol un ta ry p at ie nt , h : h ea lth y, p : p at ie nt . r es ul ts : + : p os iti ve , – : n eg at iv e, n s: n ot s ig ni fi ca nt . * c or e va lu e: o t d om ai n of c on ce rn s. i t i s th e ar ea o f ac tiv ity o f da ily li vi ng , p ro du ct iv ity an d le is ur e ac ti vi ti es . occupational therapy trials hong kong journal of occupational therapy only publications remained. these publications were then evaluated for their quality of design, analysis and reporting in a systematic manner. i used both the medline and the cochrane library databases in my search and also contacted staff specializing in ot at the hong kong polytechnic university to identify published, randomized, controlled ot trials. due to restricted time available for this research study, i did not use other sources, such as abstracts from recent scientific meetings or a reference list of published progress. nonetheless, i strongly feel that i was able to give a realistic and clear picture of the strength of ot research up to the year . i was surprised to learn of the relatively small number of randomized, controlled ot trials identified, i.e., only . of them compared one ot treatment with another ot treatment while the rest compared one ot treatment with a non-ot treatment. indeed, most of the excluded publications, which focused on the comparison of efficacy among ot or non-ot treatments, could have used randomization, but unfortunately, they did not. moreover, there were studies that reported the efficacy of certain specific ot treatments as still uncertain (severens et al., ; ballinger et al., ), when a more definitive answer could have certainly been determined through conducting randomized clinical trials (chappell, ). it was also clear that with increasing demands by health authorities to provide evidence for clinical practice to garner future funding, ot research must be improved and follow modern concepts of clinical research methodology. quality of occupational therapy trials the quantity of ot clinical research, more specifically randomized, controlled trials, is essential for the development of the profession. however, quantity is not the only element. more important is the quality of the research conducted. in my review, i found that % ( / ) of the identified ot research published could be regarded as average or above average in terms of study quality. none of the randomized, controlled trials reviewed were seen as excellent. even the top-quality trials missed essential components of randomized clinical trials such as blinding. for example, for the trials by close et al. ( ) in fall prevention and by robichaud ( ) in geriatric dementia care, blinding was feasible. however, it was not applied. this can be regarded as lack of awareness of the concept of ebp. the concept of forming appropriate randomized clinical trials and its relation to ebp is relatively weak. the overall impression of the quality of the trials reviewed was fair or good. i was pleased that most articles described the patient populations studied in a clear way so that researchers knew to whom to apply the results. on the negative side, we emphasize three important study quality or design issues. the first issue is lack of calculations for a predetermined sample size, which was the most common deficit among ot trials. this was especially evident when the sample size was too small to be able to demonstrate a statistical difference of clinical significance. secondly, there were issues with missing values in several studies. the authors realized the problem, but there were difficulties with the statistical analyses, given too many missing values. thirdly, there was frequent lack of applying a blinding evaluation procedure. non-blinded studies are known to run the risk of figure: distribution of the quality scores of the publications of randomized-controlled trials. quality score n o . o f p u b li c a ti o n s table . number of publications with adequate quality characteristics classified by quality score score (n = ) score (n = ) score (n = ) quality characteristics n % n % n % patient type . . . sample size rationale . . inclusion/exclusion criteria . . . baseline comparison . . . measurement used to access goal . . . blinding . . missing data . . . duration of therapy . . . randomization . . . eddie, ka hang leung hkjot ; hong kong journal of occupational therapy introducing bias, so the treatment effect between groups appears larger than when a blinded study design is used. based on the above findings, i can be sure that the authors of the respective trials did not have an adequate knowledge of the consolidated standards of reporting trials (consort) (begg et al., ). the consort statement is a checklist for reporting publications and is composed of items pertaining to the content of title, abstract, introduction, methods, results and discussion. the statement provides the guidelines for reporting trials. authors should follow the consort statement so that readers understand the trial design, conduct, analysis and interpretation. moher et al. ( ) also reported that the consort statement improves the quality of randomized clinical trial reports. therapeutic area of occupational therapy randomized, controlled trials the reviewed ot randomized, controlled trials studies comprised a wide spectrum of daily ot practices. these areas were classified into geriatric, paediatric, cardiovascular accident (cva) pathology, brain injury, rheumatoid arthritis, parkinsonism, specialities of psychiatry and vocational rehabilitation, and the professional philosophical core values of ot. in the geriatric area, the scope of investigation was geared to the interaction between hospital care and the community or home care. community geriatric programmes were extensively evaluated in the trials reviewed. research included the enhanced function and fall prevention programmes. it not only covered the physical aspect of geriatric care, but also the psychosocial aspect of leisure rehabilitation. from the point of view of diversity and specificity, geriatric research was clearly the most impressive among the fields included in ot randomized, controlled trials. in cva pathology, the research areas were broad and included impairment, disability and handicap. the studies included the specific handling techniques for cva impairment such as sensory integration. it also encompassed exercise table . distribution of occupational therapy randomized, controlled trials by therapeutic area quality score no therapeutic areas n (%) outcome measures n (%) geriatrics ( ) memory training ( ) preventive measures ( ) social group ( ) assistive device ( ) others ( ) total paediatrics ( ) preventive program ( ) specific technique ( ) total stroke ( ) home activity ( ) leisure activity ( ) specific technique ( ) assistive device ( . ) exercise ( . ) total brain injury ( ) activity therapy ( ) cognitive therapy ( ) assistive device ( ) total rheumatoid arthritis ( ) education program ( ) exercise ( ) preventive measures ( ) total parkinsonism ( ) group therapy ( ) total psychiatry ( ) group therapy ( ) total core values ( ) activity therapy ( ) total work rehabilitation ( ) preventive measures ( ) total others ( ) assistive device ( ) exercise ( ) total occupational therapy trials hong kong journal of occupational therapy activity in dealing with disabilities such as upper limb facilitation training. furthermore, it investigated the efficacy of assistive device application for handling the issue of handicap level. in addition to the above-mentioned two areas, there were several other areas that the identified ot randomized, controlled trials covered. however, coverage and strength was weaker than in the geriatric and cva areas. in these other areas, there is clearly a need for further randomized, controlled trials to provide better evidence for improvement of patient care. in psychiatry, i only found a small number of ot trial publications, and they were solely conducted in the area of group skills training. nonetheless, the most important and the most time-consuming ot practices in psychiatry are industrial rehabilitation and independent-living skills training. i did not identify any randomized, controlled trials of such important clinical practices, which is both a remarkable and a critical finding. among studies of brain injured patients, there was also a notable lack of randomized controlled trials. the basis of ot brain injury rehabilitation is cognitive therapy, yet only one ot randomized, controlled trial was identified on this group of patients. other important ot activities for brain injury rehabilitation are activity therapy and assistive therapy, and these two therapy areas are also in need of randomized controlled trials. the number of ot randomized, controlled trials that addressed vocational rehabilitation of patients was also far from satisfactory. only one trial was identified between and early . this is alarming for the ot profession because the low level of activity in work rehabilitation is one of occupational therapists’ biggest concerns. the quantity of good-quality ot core value studies was also limited. at the traditional core of ot, the activity of human occupation is most essential. proof of the efficacy of activity is necessary in daily practice. the concern is not only for treatment effectiveness, but also the usefulness of the activity in the treatment. it is, therefore, essential to build a strong base to prepare for further growth, and it merits more attention. evidence in the clinical practice of occupa- tional therapy in hong kong, as in the rest of the world, the concept of ebp is gaining ground. the concept is also becoming increasingly better understood among occupational therapists. nonetheless, the main concerns of ot in clinical practice are still in the hands of expert opinion. the evidence is commonly provided by the experts’ own experiences, and is not based on evidence from research. a first step to entering the area of ebp is through a critical review of the current evidence. from my review, i found good evidence for clinical benefits of ot practice in the following areas: • fall prevention in geriatric care • community geriatric function enhancement • ambulatory home rehabilitation for cva patients • sensory integration in paediatric care however, there is still a lack of evidence in most areas of ot practice. the most important of these are: • vocational rehabilitation • independent-living skills training in psychiatry • cognitive therapy in brain injury rehabilitation future research my review clearly shows a lack of solid clinical research in ot using the modern concepts of clinical research methodology. while we are not in a position to dictate the type of ot research that should be conducted, i found two areas, geriatric and cva pathology, in which high-quality ot research on clinical practice has been published. on the other hand, other areas such as vocational rehabilitation and cognitive therapy have little research evidence on the efficacy of intervention. it would be natural and justifiable to direct research resources to these areas in the future. the most critical point for improvement of ot clinical practice and research is the overall quality improvement of research designs. out of a large number of ot publications, only a few ( ) used the key research design for a proper evaluation of medical practice, i.e., the randomized controlled trial design. the future of ot research design should shift emphasis from observational studies or uncontrolled experimental studies to randomized controlled trials to enhance ebp. weaknesses and strengths of the study one could argue that this review is a restricted one, since only randomized controlled trials were reviewed. all other ot research reports, which may represent as much as % of all output, were not taken into consideration. we know that observational studies are important, for example, to produce clinical reference values, diagnostic test evaluations and to identify risk factors by means of case control studies. nonetheless, the main theme of this study was to identify solid evidence of ot clinical practice in line with the recommendation provided by the cochrane library. in this respect, there are three levels of evidence. the weakest evidence is provided by eddie, ka hang leung hkjot ; hong kong journal of occupational therapy clinical experience, the moderate quality evidence grading is provided by non-randomized, controlled clinical studies and the strongest evidence only comes from randomized, controlled, blinded trials of adequate sample size. i believe that i have produced a critical review of ot randomized, controlled trials, and we accept that this is only a partial picture of ot clinical research. references american occupational therapy association. http://www.aota.org ballinger, c., ashburn, a. & low, j. 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( ). a pet therapy intervention with geriatric psychiatry inpatients. american journal of occupational therapy, ( ), – . appendix checklist for assessing clinical trials title : general characteristics objective: major subsidiary eddie, ka hang leung hkjot ; hong kong journal of occupational therapy population discussed? problems? . type (patients/healthy) . rationale for size (n) . expected difference . how recruited? . inclusion criteria . exclusion criteria . comparability of groups demographic prognostic criteria stage of disease response to therapy associated disease similarity to usual patients treatment compared discussed? problems? . dose rationale and details (amount/time) . dosage form, route . duration of therapy experimental design discussed? problems? . control . assignment of treatments: randomised? (balanced?) stratification? other . timing (schedule of visits, laboratory tests) data collection discussed? problems? . measurements used to access goal . method of collection . adverse effects subjective (volunteered, elicited) objective results discussed? problems? . clinical efficacy . bacteriological efficacy . safety . drop-outs reasons effect on results data analysis discussed? problems? . missing data . statistical tests differences no difference due to limited power? overall quality score note: “ ” for a high quality study (methodologically strong without important weakness) “ ” for one of reasonable quality (some weaknesses in study design or results) “ ” for a weak study (definite shortcomings in design or results) “ ” for a poor study (serious weaknesses) wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" 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joint infection after a dog lick: a case report describing a complicated two-stage revision and a comprehensive review of the literature. can j infect dis med microbiol ; ( ): - . prosthetic joint infections (pjis) are commonly caused by pathogens such as staphylococcus aureus and coagulase-negative staphylococci; however, other microbial etiologies and specific risk factors are increasingly recognized. pasteurella multocida is a gram-negative coc- cobacillus that is part of the normal oral flora in many animals, and is particularly common in dogs and cats. pjis caused by p multocida have been reported only rarely in the literature and typically occur in the context of an animal bite or scratch. the present article describes a p multocida joint infection that occurred after a dog lick and compli- cated a two-stage revision arthroplasty. a comprehensive review of the literature regarding p multocida pjis follows. key words: dog bite; dog lick; pasteurella multocida, prosthetic joint infection l’infection à pasteurella multocida non indigène d’une articulation léchée par un chien : rapport de cas d’une révision compliquée en deux étapes et analyse bibliographique approfondie les infections sur prothèse articulaire (ipa) sont souvent causées par des pathogènes comme le staphylococcus aureus et les staphylocoques à coagulase négative. cependant, on constate de plus en plus d’autres étiologies microbiennes et de facteurs de risque particuliers. le pasteurella multocida, un coccobacille à gram négatif qui fait partie de la flore orale normale de nombreux animaux, est particulièrement courant chez les chiens et les chats. peu d’ipa causées par le p multo- cida sont signalées dans les publications scientifiques, mais elles se produisent surtout après une morsure ou une griffure d’animal. le présent article décrit une infection à p multocida qui s’est manifestée après que l’articulation a été léchée par un chien et une arthroplastie de révision compliquée en deux étapes. une analyse bibliographique approfondie de l’ipa à p multocida suit. pasteurella multocida non-native joint infection after a dog lick: a case report describing a complicated two-stage revision and a comprehensive review of the literature philip w lam bscphm md , andrea v page bsch msc md frcpc , prosthetic joint infections (pjis) are common, occurring in approxi-mately % to % of all joint replacements ( ). bacterial seeding of the prosthetic joint can occur during surgery or afterward via hema- togenous spread. pathogens such as staphylococcus aureus and coagulase- negative staphylococci account for the majority of pjis; however, other factors, such as the joint involved, timing of infection postoperatively, and comorbidities, can influence the microbiology ( ). risk factors for pjis include older age, diabetes, rheumatoid arthritis, immunosuppres- sive medications, malignancy and history of arthroplasty revision ( ). perioperative factors, such as hematoma formation, superficial surgical site infection, wound drainage and wound dehiscence, have also been identified as risk factors ( ). in the present report, we describe a two-stage revision arthroplasty that was complicated by a pasteurella multocida joint infection follow- ing a dog lick, and present a comprehensive review of the literature surrounding p multocida pjis. case presentation a -year-old woman presented to the emergency department with a five-day history of chills, progressive right hip pain and difficulty ambulating. her medical history was significant for a right total hip arthroplasty eight years previously due to osteoarthritis and severe obesity. she experienced an acute postoperative wound infection requiring irrigation and debridement and a second infection two years later requiring a staged revision. one year before presentation, she began to experience a series of monomicrobial pjis that were treated with a combination of surgery and antimicrobial therapy as follows: staphylococcus lugdunensis (two-stage revision, ceftriaxone), klebsiella pneumoniae (irrigation and debridement with liner exchange, ciproflox- acin), coagulase-negative staphylococcus (first stage of a planned two-stage revision with cement spacer, vancomycin) and candida albicans (cement spacer exchange, fluconazole). two months before presentation, she under- went excision of all hardware in the hip as part of a planned two-stage joint revision given recurrent infections with the cement spacer in situ. at that time, she received a six-week course of ertapenem for a joint infection with class a extended-spectrum beta-lactamase (esbl)-producing escherichia coli, with a vacuum-assisted wound dressing of the surgical site. at presentation, she was afebrile, but examination of the right hip revealed a nonhealing, erythematous wound with purulent discharge. she had leukocytosis ( , cells/µl) and elevated inflammatory markers (erythrocyte sedimentation rate mm/s, c-reactive protein mg/l), and was immediately taken to the operating room for irrigation and debridement. diagnosis three of three operative cultures of synovial tissue and fluid were posi- tive for p multocida (susceptible to ceftriaxone, imipenem, levoflox- acin, meropenem, penicillin and trimethoprim/sulfamethoxazole) (table ) and corynebacterium striatum (susceptible to vancomycin and gentamicin, resistant to erythromycin and penicillin) (table ). bacterial identification was confirmed using fatty acid methyl ester analysis with gas chromatography, and susceptibilities were deter- mined using sensititre susceptibility mic plates (trek diagnostic systems, usa). of note, she was also confirmed to be colonized with esbl-producing organisms based on rectal swabs obtained as part of routine infection control screening practices then in place. on further review this open-access article is distributed under the terms of the creative commons attribution non-commercial license (cc by-nc) (http:// creativecommons.org/licenses/by-nc/ . /), which permits reuse, distribution and reproduction of the article, provided that the original work is properly cited and the reuse is restricted to noncommercial purposes. for commercial reuse, contact support@pulsus.com department of medicine, university of toronto; division of infectious diseases, mount sinai hospital, toronto, ontario correspondence: dr andrea v page, mount sinai hospital, suite , university avenue, toronto, ontario m g x . telephone - - ext , e-mail apage@mtsinai.on.ca pasteurella multocida infection can j infect dis med microbiol vol no july/august questioning, she was found to live with five dogs and two cats, and reported allowing her dogs to lick a superficial laceration on her right lower leg that she had sustained in a fall just before symptom onset; she denied allowing her pets to lick her surgical wound site. on the basis of her most recent culture results and known esbl colonization, she was treated with intravenous vancomycin and ertapenem for six weeks. one month following admission, she was discharged to a rehabilitation facility with instructions to avoid close pet contact with any unhealed or open wounds. she responded well to antimicrobial therapy and a vacuum-assisted dressing. two months later, the patient underwent the second stage of her planned two-stage revision, with hip prosthesis re-implantation without complications. she remains free of infection after months of follow-up. discussion p multocida is a gram-negative coccobacillus that is part of the normal oral flora in many animals, including domestic dogs and cats ( , ). infections caused by p multocida may follow an animal bite or scratch, and range from cellulitis to septic arthritis and osteomyelitis ( ). respiratory infections can also occur, especially in patients with a his- tory of pulmonary disease or immune suppression ( ). other less com- mon infections include bacteremia, endocarditis, meningitis and intra-abdominal infections ( ). although our case is unique in that infection occurred after exci- sion arthroplasty in the midst of a two-stage revision, pjis caused by p multocida have been reported in the literature and typically occur in the context of an animal bite or scratch. a comprehensive literature review revealed documented cases of p multocida pjis, all of which involved either the hip or knee joint (table ) ( - ). of the documented cases, almost all patients had a history of animal contact, with cases of soft tissue injury as a result. twenty-two of the cases involved cats, while cases involved dogs. women have been shown to experience cat bites more frequently compared with men ( ), and this may explain why of the reported cases of p multocida pjis involved women. known risk factors for pjis that were also present in patients with p multocida pjis included older age (mean . years), rheumatoid arthritis ( of patients [ . %]), corticosteroid use ( of patients [ . %]), other immunosuppressive therapy (two of patients [ . %]) and malignancy (one of patients [ . %]). the presumed pathogenesis of p multocida pjis following animal contact involves the inoculation of bacteria into soft tissues causing bacteremia and subsequent hematogenous seeding of prosthetic material. this is supported by the fact that most documented cases of p multocida pji occur remote from prosthesis implantation (months to years) and shortly after animal contact (days to weeks) (table ). only two cases documented animal contact > month before onset of clin- ical signs or symptoms ( , ). despite the importance of biofilm formation in the pathogenesis of typical pjis, the characteristics of p multocida biofilm formation have not been well studied. animal strains of p multocida have been shown to produce biofilms in vitro ( ); however, in vivo evidence is lacking. romanò et al ( ) performed an in vitro spectrophotometric screening with positive control testing in their reported case of p multocida pji but found no biofilm production in their isolate. the case we presented represents only the sixth documented report of p multocida non-native joint infection following a dog lick, and the first to occur after excision arthroplasty. our patient’s extensive history of pjis requiring multiple surgical revisions likely contributed to the increased risk for subsequent infections. although the patient’s hard- ware was surgically removed two months before presentation, under- lying joint damage likely facilitated bacterial adhesion and infection. we suspect the patient’s superficial laceration on the lower leg served as a portal of entry for bacteria from the dog’s saliva, facilitating hema- togenous spread and seeding of the damaged hip joint. although direct inoculation of the surgical wound by a dog lick was possible, both the history and the presence of a vacuum dressing made this less likely. p multocida infections following close pet contact have also occurred with other foreign materials including breast prostheses ( , ), vascular stent graft ( ), peritoneal dialysis catheters ( ) and hemodialysis lines ( ). however, foreign material is not a pre- requisite for infection, as illustrated by the present case (postexcision arthroplasty), as well as in three cases of respiratory pasteurellosis, which developed in patients providing palliative care to their pets ( ). these cases demonstrate the importance of counselling patients about the risk for zoonotic infection and the steps that can be taken to potentially reduce this risk, including good hand hygiene after pet contact and before dressing changes, covering the wound at all times, avoiding direct pet contact with the surgical site or other wounds, and reporting any animal-induced wounds to a physician. moreover, facilities that use animal-assisted interventions (also known as pet therapy) should ensure that institution-specific infection con- trol policies are consistent with published guidelines ( ) to minimize the risk for zoonotic infection. isolates of p multocida from human infections continue to be suscept- ible to most antibiotics including penicillin, amoxicillin-clavulanate, doxycycline, third-generation cephalosporins, fluoroquinolones and carbapenems ( - ). infections caused by beta-lactamase producing p multocida have been reported in respiratory infections but remain uncommon ( , ). it is important to note that while most human iso- lates remain susceptible to beta-lactams, strains isolated from animals have demonstrated marked resistance to a variety of antibiotics ( ). furthermore, empirical treatment of a pji in the context of a recent animal bite should be directed against a polymicrobial microbiota including gram-positive and gram-negative aerobes, and anaerobes, consistent with the expected oral flora of the animal. early cases of p multocida pjis were treated with penicillin alone ( - , ). although there were more cases of treatment failure in this group, these patients were also less likely to be treated surgically (table ). more recent reports have successfully used a third-generation cephalosporin, beta-lactam/beta-lactamase inhibitor combination or fluoroquinolone in addition to surgical intervention. interestingly, linezolid, an oxazolidinone with gram-positive activity has been shown to demonstrate in vitro activity against p multocida ( ). ferguson et al ( ) successfully treated a penicillin-allergic patient with p multocida pji using a combination of linezolid and ciprofloxacin in conjunc- tion with surgical debridement, joint lavage and replacement of the joint liner. it is unclear whether combination therapy is more effect- ive than monotherapy for the treatment of p multocida pjis, despite several case reports describing the successful use of dual antibiotics ( , , , , , , , , ). current guidelines recommend treating table in vitro susceptibility profile of pasteurella multocida isolate antimicrobial agent susceptibility mic, µg/ml ceftriaxone susceptible ≤ . imipenem susceptible ≤ . levofloxacin susceptible ≤ . meropenem susceptible ≤ . penicillin susceptible . trimethroprim/sulfamethoxazole susceptible ≤ . mic minimum inhibitory concentration table in vitro susceptibility profile of corynebacterium striatum isolate antimicrobial agent susceptibility mic, µg/ml erythromycin resistant ≥ gentamicin susceptible ≤ penicillin resistant vancomycin susceptible . mic minimum inhibitory concentration lam et al can j infect dis med microbiol vol no july/august table in vitro susceptibility profile of p. multocida isolate antimicrobial agent susceptibility* mic† (µg/ml) ceftriaxone s ≤ . imipenem s ≤ . levofloxacin s ≤ . meropenem s ≤ . penicillin s = . trimethroprim/sulfamethoxazole s ≤ . * r – resistant, s – susceptible; †mic – minimum inhibitory concentration table literature review of documented pasteurella multocida prosthetic joint infections author (reference), year age, years/ sex risk factors site time from prosthesis animal contact time to symptoms surgical intervention antibiotic treatment* outcome griffin et al ( ), /f ra, cs tka months cat scratch days none ampicillin cure maurer et al ( ), /f ra, cs tka years dog lick – none penicillin × weeks cure sugarman et al ( ), /f ra, cs tka weeks dog lick – none penicillin × weeks failure, revision arvan and goldberg ( ), /f nr tka months cat bite week debridement, joint lavage and irrigation/suction drainage ( weeks) penicillin × weeks cure spagnuolo ( ), /f nr tka months cat bite days none penicillin × weeks cure gomez-reino et al ( ), /f nr tka years cat bite day none cephalothin × weeks, cephalexin × weeks failure, revision mellors and schoen ( ), /f ra, cs b/l tka nr cat scratch days joint lavage penicillin × weeks cure orton and fulcher ( ), /f nr b/l tka years cat bite h none ampicillin × days, penicillin + tetracycline × weeks failure, revision braithwaite and giddins ( ), /f diabetes tha years cat bite nr single stage revision penicillin + flucloxacillin × weeks cure gabuzda and barnett ( ), /f nr tka months cat bite days debridement, removal of prosthesis, placement of cement spacer ampicillin/sulbactam × weeks, penicillin × weeks cure guion and sculco ( ), /f ra, cs tka years dog scratch days two-stage revision cefotaxime × weeks cure antuna et al ( ), /f ra tka year dog bite months single-stage revision ciprofloxacin × weeks cure maradona et al ( ), /f diabetes tka months dog bite days debridement, joint lavage penicillin × weeks, ciprofloxacin × weeks cure takwale et al ( ), /f ra, mtx, cs tha years cat scratch day two-stage revision benzyl penicillin × weeks, ciprofloxacin × weeks cure chikwe et al ( ), /m nr tha years dog contact – two-stage revision unknown cure ciampolini et al ( ), /f nr tka months cat scratch weeks two-stage revision benzyl penicillin + ciprofloxacin, amoxicillin + ciprofloxacin × weeks cure mehta and mackie ( ), /f ra, cs tha years cat scratch month single-stage revision benzyl penicillin × week, ciprofloxacin × weeks cure mehta and mackie ( ), /f ra, mtx, cs tha years cat scratch nr two-stage revision benzyl penicillin × weeks, ciprofloxacin × weeks cure polzhofer et al ( ), /f nr tka months cat bite days arthroscopic debride- ment, synovectomy, irrigation/suction drain- age ( days) ampicillin/sulbactam + clindamycin × weeks cure stiehl et al ( ), /m nr tka days dog contact, horse injury – two-stage revision ciprofloxacin and piperacillin/tazobactam cure zebeede et al ( ) /f sle, aps, cs tka years cat scratch weeks none ciprofloxacin × weeks cure heym et al ( ), /f nr tka year dog lick weeks synovectomy, removal with reimplantation doxycycline + amoxicillin × weeks failure, revision serrano et al ( ), /m nr tka years cat scratch nr joint lavage amoxicillin/clavulanate × weeks, ciprofloxacin × weeks + tmp/smx × weeks cure kadakia and langkamer ( ), /f breast carcinoma tka months cat bite – days arthroscopic joint lavage cefuroxime × weeks, ciprofloxacin × weeks cure continued on next page pasteurella multocida infection can j infect dis med microbiol vol no july/august nonstaphylococcal pjis with four to six weeks of antimicrobial therapy ( ). of the case reports with documented duration of therapy, were treated with at least four weeks of antibiotics and were treated with > weeks of antibiotics (table ). the present report represents the first case of p multocida joint infection successfully treated with ertapenem. the decision to treat with ertapenem was based on its documented efficacy in vitro against p multocida ( ), the patient’s positive esbl screening swabs and his- tory of pji caused by esbl-producing organisms and the ease of out- patient dosing. the presence of c striatum in all operative cultures also prompted treatment with vancomycin. in one study of the microbiol- ogy of infections after animal-induced injuries, corynebacterium spe- cies accounted for % of aerobic bacteria isolated from infected dog bite wounds ( ). however, corynebacterium species are part of normal human skin flora and, therefore, may have entered the wound from the patient’s skin postoperatively during prolonged wound healing. the optimal surgical management of pjis should be individualized. our literature review demonstrated a wide spectrum of surgical inter- ventions, including no intervention (seven of patients [ . %]), lavage only (four of patients [ . %]), debridement and lavage (four of patients [ . %]), debridement with replacement of exchangeable components (six of patients [ . %]), single-stage revision (four of patients [ . %]) and two-stage revision (six of patients [ . %]). earlier case reports of p multocida pjis were more likely to be treated nonoperatively. of the seven patients treated nonoperatively, three ( . %) failed antimicrobial therapy alone ( , , ). the benefits of less-invasive interventions must be bal- anced with the risk of treatment failure. algorithms have been developed by expert panels to identify patients with pjis suitable for less-invasive interventions ( , ). factors in the algorithm include duration of illness, extent of soft tissue infection, presence of coexisting illness, surgical risk, stability of implant and bacterial susceptibility to antibiotics ( , ). however, these algorithms do not specifically address pjis associated with zoonotic pathogens. our patient underwent irrigation and debridement because there was no prosthetic material present at the time of infection. several authors of previous case reports have advocated for the use of prophylactic antibiotics in all individuals with a prosthetic joint who have sustained an animal bite, especially if other risk factors are present (such as rheumatoid arthritis or corticosteroid use). proposed antibiotics include penicillin ( ), oxacillin ( ), amoxicillin ( ), cefuroxime ( ) and amoxicillin/clavulanate ( ). recent guidelines have recommended antibiotic prophylaxis in all individuals with bite wounds at high risk for developing infection, such as those with sig- nificant immunocompromise (diabetes, steroid use, hiv, peripheral vascular disease), advanced liver disease, edema of the affected area and wounds involving deeper structures ( ). to our knowledge, the use of prophylactic antibiotics following an animal bite or scratch in individuals with a prosthetic joint has not been directly addressed. conclusion the present report represents the sixth documented case of p multo- cida non-native joint infection following a dog lick, and the first to occur in the midst of a two-stage revision. the accompanying litera- ture review of pjis caused by p multocida is the most comprehensive performed to date and includes all cases reported in the literature. while pjis due to p multocida classically occur following an animal bite or scratch, our review highlights the fact that penetrating trauma is not a prerequisite for infection. it is important for clin- icians to ask about animal exposure when evaluating a patient with a pji, particularly if the infection has occurred remote from the sur- gery, so that the appropriate empirical therapy can be chosen. our literature review also documented other risk factors that may increase the risk for p multocida pji following an animal-induced wound, including rheumatoid arthritis, corticosteroids, other immunosuppressive therapy and malignancy. in light of the case presented here, it is reasonable to counsel patients about the risk for zoonotic infections of surgical wounds and the steps that can be taken to potentially reduce this risk, such as maintaining good hand hygiene after pet contact, keeping wounds covered, avoiding direct pet contact with any unhealed, uncovered or open wounds, and reporting all significant animal-induced wounds to a physician. disclosures: the authors have no financial disclosures or conflicts of interest to declare. table – continued literature review of documented pasteurella multocida prosthetic joint infections author (reference), year age, years/ sex risk factors site time from prosthesis animal contact time to symptoms surgical intervention antibiotic treatment* outcome miranda et al ( ), /m nr tka year cat scratch/ bite days joint lavage, debridement, replacement of spacer amoxicillin/clavulanate + levofloxacin × weeks cure romanò et al ( ), /f ra tka years cat scratch months debridement and replacement of tibial tray amoxicillin/clavulanate × days + ciprofloxacin × weeks cure subramanian et al ( ), /m nr tka days probable dog lick – debridement, joint lavage and replacement of liner cefuroxime × weeks, doxycycline × weeks cure ferguson et al ( ), /f nr tka weeks dog lick – debridement, joint lavage and replacement of insert linezolid × weeks + ciprofloxacin × weeks cure vélez et al ( ), /m nr tka months cat bite days debridement, and replacement of spacer ampicillin/sulbactam × weeks, amoxicillin/clavulanate × weeks cure alsaffar and gaur ( ), /f nr tha years 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antimicrobial agents against aerobic and anaerobic pathogens isolated from skin and soft tissue animal and human bite wound infections. j antimicrob chemother ; : - . . goldstein ej, citron dm, merriam cv, warren ya, tyrrell kl, fernandez ht. comparative in vitro activity of faropenem and other antimicrobial agents against aerobic and anaerobic pathogens isolated from skin and soft tissue infections from animal and human bites. j antimicrob chemother ; : - . . lion c, conroy mc, carpentier am, lozniewski a. antimicrobial susceptibilities of pasteurella strains isolated from humans. int j antimicrob agents ; : - . . lion c, lozniewski a, rosner v, weber m. lung abscess due to beta-lactamase-producing pasteurella multocida. clin infect dis ; : - . . rosenau a, labigne a, escande f, courcoux p, philippon a. plasmid-mediated rob- beta-lactamase in pasteurella multocida from a human specimen. antimicrob agents chemother ; : - . . kehrenberg c, schulze-tanzil g, martel jl, chaslus-dancla e, schwarz s. antimicrobial resistance in pasteurella and mannheimia: epidemiology and genetic basis. vet res ; : - . pasteurella multocida infection can j infect dis med microbiol vol no july/august . goldstein ej, citron dm, merriam cv. linezolid activity compared to those of selected macrolides and other agents against aerobic and anaerobic pathogens isolated from soft tissue bite infections in humans. antimicrob agents chemother ; : - . . osmon dr, berbari ef, berendt ar, et al. executive summary: diagnosis and management of prosthetic joint infection: clinical practice guidelines by the infectious diseases society of america. clin infect dis ; : - . . abrahamian fm, goldstein ej. microbiology of animal bite wound infections. clin microbiol rev ; : - . . leone s, borre s, monforte a, et al. consensus document on controversial issues in the diagnosis and treatment of prosthetic joint infections. int j infect dis ; suppl :s - . . stevens dl, bisno al, chambers hf, et al. practice 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outcome in an adolescent journal of child and adolescent psychopharmacology volume , number , © mary ann liebert, inc. pp. – doi: . /cap. . advanced pediatric psychopharmacology postraumatic stress disorder and reactive attachment disorder: outcome in an adolescent presenter: gholson j. lyon, m.d., ph.d. discussants: barbara coffey, m.d., m.s. and raul silva, m.d. nyu child study center new york, new york chief complaint and presenting problem t., a -year-old hispanic boy, was transferred to a statechildren’s psychiatric hospital for management of “be- havioral problems.” he admitted to getting angry and break- ing things and complained of insomnia, nightmares, and fre- quent nervousness. history of present illness t. was reported to have a long history of aggressive, as- saultive, and unpredictable behavior, angry and irritable moods, impulsivity, hyperactivity, enuresis, and a history of nightmares and flashbacks. t. had experienced four prior psychiatric hospitalizations. prior to the current transfer, during an approximately three-month stay at a private hos- pital, t. was reported to have become increasingly aggres- sive, assaultive, and impulsive, requiring frequent as-needed medications including intramuscular injections of lo- razepam, haloperidol, and chlorpromazine. lorazepam and other benzodiazepines were thought to cause disinhibition and worsened his behaviors. upon transfer to the state chil- dren’s psychiatric hospital, t. carried diagnoses of mixed bipolar disorder, thyroid abnormalities, asthma, and possi- ble fetal alcohol syndrome. upon transfer, t.’s medications included risperidone mg, clozapine mg, valproic acid mg, guanfacine mg, and desmopressin . mg. his as-needed medications were chlor- promazine mg every two hours, with a maximum of four doses daily, benadryl mg every four hours, and albuterol inhaler two puffs every four hours with a maximum of four doses daily. the clozapine dose had been adjusted downward in the previous hospital due to sedation and drooling. past psychiatric history t. had been hospitalized four times, at ages , , and ; each lasted – months. the last hospitalization led to trans- fer to the current state hospital. from age to the present, t. lived primarily in foster care or at a residential treatment center when he was not in the hospital. prior diagnoses given on discharge summaries included intermittent explosive dis- order, oppositional defiant disorder, rule-out bipolar mood disorder not otherwise specified (nos), and rule-out con- duct disorder. it was noted that hospitalizations were usu- ally triggered when foster or group home parents went on vacation or when t. had a rare visitation with his biological mother. t. was first hospitalized at age for increasing aggression and reportedly smearing feces and fondling his younger sib- ling. he was also noted to have no friends and to frequently threaten to kill himself when limits were set. there were also sexualized behaviors towards his younger stepbrothers; his father and stepmother described him as “never happy,” stealing food and money, lying when caught, and hoarding food. he was also fascinated by guns and violence. all of the above led to suspicion of neglect and physical and/or sex- ual abuse of t. at an earlier age. t.’s parents requested out of home placement for him at age for many reasons, in- cluding fear for the safety of the other children, and he was placed in therapeutic foster care. t.’s second hospitalization occurred at age due to an in- crease in aggressive behavior. he also reported experiencing command auditory hallucinations telling him to hurt people. his thinking was disorganized, characterized by strained reasoning, poor judgment, and suspicion. it was noted that he often misinterpreted his environment and his interaction with others, and preferred to isolate himself from his peers. after about two weeks of medication adjustments, thera- peutic milieu, and individual therapy, he began to show im- provement in his ability to resist assaulting others. his di- agnosis at discharge was psychotic disorder, nos. the third hospitalization occurred at age , also for acting out and aggressive behavior, although the treatment records were unavailable from this hospitalization. he was appar- ently discharged to a residential treatment center at the end of this hospitalization. developmental history, including pregnancy, birth, infancy there was some suspicion that the biological mother may have used marijuana, alcohol, and perhaps cocaine during pregnancy, which the biological mother denied. the patient was born by caesarean section. there was no information available on developmental milestones. records indicated that the baby bonded/attached to his mother, and that when he was crying and in distress she would pick him up and he would respond to her touch and comfort. the parents divorced when t. was less than year old, and his mother received custody; however after one year, she decided that she could not care for him any longer. the mother reportedly had ongoing drug abuse during this time involving cocaine and marijuana. while living with his mother, t. was sent from one baby sitter to another and also sometimes lived with his mother’s friends until the biologi- cal father regained custody when t. was / years old. his father remarried; at age – , t. was living with his father (age ) and stepmother (age ), one stepsister and four stepbrothers, ranging in age from to . educational history t. has been in special education classes since kindergarten. he repeated third and fourth grades for behavioral prob- lems. he was noted to have “difficulty in learning” and was “exhibiting sexually inappropriate behavior in school.” he reportedly struggled with peer relations at school. prior to the most recent hospitalization, t. had been in the fifth grade in a special education setting, with a : paraprofessional. social history t. was allegedly sexually abused by the biological mother, although the full details of this were never disclosed. there were also reports of physical abuse by his biological father, and t. reported flashbacks of “being beaten” by the father. however, there are conflicting reports from different family members about the biological mother, biological father, and stepmother. there was one report that t. may have been hit in the head by the stepmother and had food withheld for punishment. there were conflicting reports by his grandmother and others regarding t.’s ability to initiate and maintain friend- ships. t. enjoys playing with action figures, bike riding, roller-skating, skate boarding, and drawing. he likes to play basketball, hunt with his grandfather, and make bows and arrows out of wood. currently, his biological mother has only supervised vis- itation, which takes place sporadically. t. is reported to have little contact with his biological father and stepmother. family history records report that the patient’s biological mother has de- pression and bipolar illness. she was also reported to be ad- dicted to cocaine and marijuana. the biological father had attended a special educational setting as a child for atten- tion-deficit/hyperactivity disorder (adhd) and behavioral difficulties. the biological father had also been reportedly addicted to marijuana. he is currently incarcerated, and a half-brother is also in jail, allegedly for conviction in a sex- ually related crime. previous psychological testing psychological evaluation was conducted when the patient was years old. the summary indicated “at least low-aver- age intelligence.” the patient displayed an uneven pattern of functioning across attentional measures but appeared to have marked difficulty on those that required sustained at- tention or inhibiting impulsive responding. these tests also highlighted clinically severe fine motor control problems, at- tentional problems, and difficulties with disinhibition, sug- gesting adhd, primarily hyperactive-impulsive type, which may be comorbid with a mood disorder. psychological testing was repeated prior to transfer, but this was when t. was sedated and on substantial doses of medication, including risperidone, clozapine, valproic acid, guanfacine and desmopressin. the results on the weschsler intelligence scale for children, fourth edition (wisc-iv) in- cluded a full scale iq of , with subscale scores of verbal comprehension , perceptual reasoning , working mem- ory , and processing speed . there was a great deal of scatter noted on subtests. during this admission, t. was screened for adhd with swanson, nolan and pelham (snap) rating scales, and met the % cutoff criteria for adhd and oppositional defiant disorder. medical history t. has a history of possible exposure to cocaine and alco- hol in utero. there is some question of mild fetal alcohol syn- drome manifest by mild facial dysmorphia noted in previ- ous records. there was a history of thyroid problems, details unknown, in the past. he also has mild asthma. medication history past medications include risperidone, paroxetine, per- phenazine, loxapine, haloperidol, olanzapine, quetiapine, aripiprazole, valproic acid, propranolol, and bupropion, but the dosages and time frames used are not available. it is known that he was discharged from his second hospitaliza- tion at age on quetiapine mg, perphenazine m., and valproic acid mg daily. mental status examination on admission t. is a hispanic pubertal boy appearing his stated age wearing a t-shirt and shorts, with flip-flop sandals. there were not any readily apparent facial dysmorphias. his speech was mildly slurred but understandable. he was no- tably sedated, drooling at times. his mood was described as “ok,” but his affect appeared constricted in the dysphoric and irritable range. he was noted to be hypervigilant and to become quite irritable very quickly, yelling “don’t touch me! don’t touch me!” whenever he perceived someone ap- proaching toward him. he denied suicidal or homicidal ideation, and he further denied any perceptual distortions, including auditory or visual hallucinations. his thought pro- cesses were disorganized, and there was a paucity of thought content. his insight and judgment were deemed poor. on advanced pediatric psychopharmacology admission, he was noted to be oriented to name, place, and time, but no other cognitive testing was done at that time. hospital course upon admission, t. displayed mood instability, poor judg- ment, and verbal and physical threats to harm peers and staff. he was extremely assaultive and aggressive. he was unable to use words to express his feelings, which resulted in him spitting, biting, kicking, cursing, and hitting during times of crisis. he was placed on constant observation ( : ) upon admission due to the severity of his aggression. he re- ported occasional nightmares, was described as hypervigi- lant around all staff, and occasionally had early insomnia. medical workup, including physical exam, blood chemistries, neurological examination, and an mri of the spine were within normal limits. t. remained aggressive in the hospital for many months (fig. ). his treatment consisted of behavioral and pharma- cologic intervention used in combination. over the final five months of hospitalization, the patient showed remarkable improvements, with less overall number of incidents and with less violence in each episode (fig. ). there was never a time during this greater � -month hos- pitalization in which there was any evidence of a bipolar or any psychotic disorder. during his time in the hospital, the patient did not display sexually inappropriate or fire-setting behaviors. pharmacological management after admission, t. was gradually tapered off of risperi- done mg, clozapine mg, and valproic acid mg. a trial of lithium was started but discontinued after anger and behavioral problems notably increased. he was initially given chlorpromazine only on an as-needed basis, with doses ranging from – mg by mouth (po) or intramuscular (im), usually given once or twice per week. other medica- tions included diphenhydramine mg po or mg im and risperidone m tabs mg po as needed. these were given also – times per week during the first several months. standing doses of chlorpromazine were added, initially mg three times daily (tid) and increased to mg four times daily, which caused substantial sedation. later, chlorpro- mazine was lowered, and sertraline was begun to target the aggression (siegel et al. ). sertraline was titrated up slowly to a total dose of mg daily. notably, despite a childhood diagnosis of adhd, t. had never had a trial of stimulants, as far as could be determined from available records and from grandparents. a trial of im- mediate-release methylphenidate was started and titrated up to mg po tid with no adverse effects. there was a dra- matic improvement in his attention, concentration, and hy- peractivity. guanfacine (titrated up to a total dose of mg daily) was added to address residual impulsivity and irri- tability, which also was beneficial in controlling this behav- ior. towards the end of t.’s hospital course, in order to sim- plify his medication regimen, the immediate release methylphenidate was changed to extended release concerta mg daily, which he also tolerated well. during tapering of the chlorpromazine, t. was noted to have some pill-rolling, shoulder shrugging, and stiff gait, which was felt to be due to withdrawal dyskinesia. given the extrapyramidal symptoms and emergence of a possible withdrawal dyskinesia, it was decided to slow the taper of chlorpromazine, and he was discharged on a very small dose of chlorpromazine. desmopressin was given for enuresis with resolution of symptoms. during the hospitalization, t.’s height increased from five feet two inches to five feet four and one half inches, and his weight increased slightly from . lbs to lbs. postraumatic stress disorder and reactive attachment fig. . number of incidents including crisis team interventions (calls overhead for assistance), manual restraints, and ur- gent medications (by mouth or intramuscular) for each month during the course of this patient’s hospitalization. psychosocial treatment family work included t.’s paternal grandparents and his biological mother. in the beginning, all members attended and participated in sessions, although not as often as opti- mal due to transportation constraints, but eventually the mother stopped attending family meetings. in individual sessions, t. eventually was able to utilize verbal, play, and pet therapy modalities as well as some elements of cbt; self- control strategies including taking time out, verbalizing his feelings, counting, and deep breathing all worked well for him. as he progressed, the patient was able to be a more ac- tive and appropriate participant in group therapy sessions. overall, t. made significant progress from the time of ad- mission until discharge more than eight months later. t. was discharged to the care of his paternal grandparents and out- patient follow-up. brief formulation in summary, t. is a -year-old hispanic boy with a child- hood history characterized by neglect and abuse, and a his- tory in the past six years of repeated hospitalizations, insti- tutionalization, and/or placement with foster families. primary symptoms include hypervigilance, nightmares, and impulsive, hyperactive and aggressive behavior. biologically, there is a family history of adhd and in- carceration on the paternal pedigree. there is also a promi- nent history of drug use by the biological parents, including alcohol, marijuana, and cocaine, and putative in utero expo- sure to these substances resulting in mild dysmorphia noted by some health care workers, possibly consistent with fetal alcohol syndrome. psychologically, this child never had a se- cure attachment figure, and was ultimately hospitalized and now institutionalized. socially, the patient has had very lit- tle support from family members and very few meaningful object relations. on the side of strengths, the paternal grand- parents are available and seem to genuinely care for this child, although they can easily become overwhelmed when he becomes aggressive. multi-axial diagnoses axis i: post traumatic stress disorder (ptsd) reactive attachment disorder (rad) adhd rule-out oppositional defiant disorder (odd) axis ii: expressive language disorder learning disorder nos rule-out mild mental retardation axis iii: history of thyroid abnormalities exposure to cocaine and alcohol in utero; possible mild fetal alcohol syndrome axis iv: conflicted relationship with peers at residential treatment facility; history of residential placement and psychiatric hospitalizations. axis v: gaf: – . discharge medications guanfacine mg twice daily (bid) sertraline mg in the morning (am) chlorpromazine mg am concerta mg am discussion t. is an adolescent who illustrates the complexity of out- comes in a child with extreme early adversity who experi- enced likely prenatal exposure to alcohol, marijuana, and co- caine followed by abuse and neglect in the first few years of life. his childhood was characterized by loss of primary objects, multiple placements, and hospitalizations. diagnos- tically, the patient appears to have met criteria for rad, adhd, and ptsd (bowlby, ). once adequately treated with a stimulant for his adhd, the symptoms of aggression and defiance markedly decreased, although it is still possi- ble that t. meets criteria for odd. there was never any real evidence for bipolar or psychotic disorders, although these diagnoses had been given in the past without clear docu- mentation of symptoms. the essential feature of rad is markedly disturbed and developmentally inappropriate social relatedness in most contexts that begins before age and is associated with grossly pathological care. there are two types of presenta- tions. in the inhibited type, the child persistently fails to ini- tiate and to respond to most social interactions in a devel- opmentally appropriate way. the child shows a pattern of excessively inhibited, hypervigilant, or highly ambivalent re- sponses, including frozen watchfulness, resistance to com- fort, or a mixture of approach and avoidance. the other type of presentation is the disinhibited type, in which there is a pattern of diffuse attachments. the child exhibits indiscrim- inate sociability or a lack of selectivity in the choice of at- tachment figures. the disturbance is not accounted for solely by developmental delay (e.g. as in mental retardation) and does not meet criteria for pervasive developmental disorder (dsm–iv-tr). t. appears to meet criteria for the inhibited type, as he was not overly familiar with or seeking comfort from unfamiliar adults. he was impulsive in terms of adhd symptomatol- ogy, but not in a socially disinhibited way. this inhibited phenotype is also to be distinguished from social phobia; t. was hypervigilant and aloof even with familiar caregivers, rather than only in social settings. the rad likely interfered with his capacity to initiate and maintain friendships, but to further add to the complexity of differential diagnosis, must also be distinguished from the social deficits which are core feature of pervasive developmental disorders. another challenge in differential diagnosis is the question of whether t. also meets criteria for ptsd, since there is over- lap with rad symptoms. certainly the hypervigilance, in- somnia, and nightmares are consistent with ptsd. in addi- tion, hyperarousal can also render children who have been traumatized more vulnerable to having difficulty in the reg- ulation of aggression, leading to oppositionality and explo- sive defiance (donnelly, ). not surprisingly, there is re- cent evidence that children with disinhibited attachment disorders are more likely to develop ptsd in response to traumatic events, including physical and/or sexual abuse (macdonald et al., ). there has been very little investigation of the long-term course and outcome of rad; most of the database on these youth derive from four longitudinal studies of children raised in institutions (aacap practice parameters, ). these studies indicate that persistence of inhibited rad symptoms is rare in children adopted into more nurturing advanced pediatric psychopharmacology environments (aacap practical parameters, ). a mi- nority of these adopted, institutionalized youth continue to exhibit deficits in peer relations (hodges and tizard, ). some studies have documented that children from early en- vironments in which abuse and neglect have occurred may also have both rad and ptsd symptoms (hinshaw-fuse- lier, et al ). however, systematic study of comorbidity between ptsd and rad is lacking (cicchetti et al ). no psychopharmacological controlled trials for rad have been conducted. however, given the overlap of symptoms of maladaptive emotion regulation, hypervigilance and so- cial withdrawal, pharmacological treatment for the comor- bid ptsd, adhd, and disruptive behavior disorders is of- ten indicated in children who are diagnosed with rad (aacap practice parameters, ). the evidence base for efficacy of pharmacological treat- ments for ptsd in youth is limited, in contrast to the adult literature (donnelly, ). although sertraline and paroxe- tine have been fda approved for treatment of ptsd in adults, there are no specific medications approved for chil- dren and adolescents. there is only one controlled study of medication in such youth. cohen and colleagues reported in a study of youth, ages – , with ptsd, that sertraline added to trauma-focused cbt provided no clear benefit over trauma-focused cbt plus placebo (cohen et al. ). the authors concluded that there was only minimal evidence of added benefit of medication, supporting an initial trial of trauma-focused cbt or other evidence supported therapy in children with ptsd (cohen et al. ). most major drug cat- egories have been studied in uncontrolled designs, includ- ing other serotonergic agents, alpha adrenergic agonists, atypical neuroleptics, beta adrenergic antagonists, benzodi- azepines, mood stabilizing anticonvulsants, lithium, and opi- oid antagonists (donnelly ). pharmacologic intervention should be considered when target symptoms such as agita- tion, aggression, insomnia, mood difficulties, or anxiety cause distress or interference to the child. medication should always be used in combination with psychosocial interven- tion including psychoeducation, individual and family ther- apy and cognitive behavioral approaches (donnelly ). fortunately, t. responded well to his treatment over time during the most recent hospitalization, which combined pharmacological interventions with behaviorally oriented psychosocial interventions. there is no doubt that the role of the milieu itself was significant, in that t. benefited from stable, consistent, firm but warm interventions of staff. with regard to the pharmacotherapy, it is notable that this child had been treated with atypical antipsychotics, including clozapine, for unclear and off-label indications; chlorpro- mazine, used initially as an as needed treatment for aggres- sion, was able to be reduced to a modest level and given as a standing dose. it appeared that the extrapyramidal symp- toms, including the withdrawal dyskinesia, resolved during the hospitalization. it is unfortunate, given t.’s diagnosis of adhd as a young child, that he was not given a trial of stim- ulant or other medication for adhd in the past. one of the important interventions of the recent hospitalization was the addition of a stimulant to which t. responded dramatically. the prognosis in t.’s case is to be determined. given that he is at risk for guarded long term outcome as a result of his disrupted early attachments, abuse and neglect, disruptive behavior disorder and family history of adhd, substance abuse and mood disorder, close follow-up and ongoing in- tervention is essential. disclosures dr. coffey has received research support from eli lilly pharmaceutical, nimh, ninds, tourette syndrome associ- ation, bristol-myers squibb, and boehringer ingelheim. she is on the advisory boards of novartis and jazz pharmaceu- ticals. dr. lyon has received support from aacap and tourette syndrome association. dr. silva is a consultant for novartis and on the speakers bureau for astra zeneca, no- vartis, and johnson and johnson. references american academy of child and adolescent psychiatry (aa- cap): practice parameters for the assessment and treatment of children and adolescents with reactive attachment disorder of infancy and early childhood. j am acad child adolesc psy- chiatry : – , . american psychiatric association: diagnostic and statistical manual for mental disorders, th ed.,text revision (dsm-iv- tr). washington, dc: american psychiatric association, . bowlby j: attachment and loss, second edition. new york: ba- sic books, . chisholm k: a three year follow-up of attachment and indis- criminate friendliness in children adopted from romanian or- phanages. child dev : – , . chisholm k, carter mc, ames ew, morison sj: attachment se- curity and indiscriminately friendly behavior in children adopted from romanian orphanages. dev psychopathol : – , . cicchetti d, toth sl, lynch m: bowlby’s dreams come full circle: the application of attachment theory to risk and psycho- pathology. in: advances in clinical child psychology. edited by ollendick th, prinz rj. new york: plenum, , pp – . cohen ja, mannarino ap, perel jm, staron v: a pilot random- ized controlled trial of combined trauma-focused cbt and ser- traline for childhood ptsd symptoms. j am acad child ado- lesc psychiatry : – , . donnelly cl: pharmacologic treatment approaches for children and adolescents with posttraumatic stress disorder. child adolesc psychiatric clin n am : – , . goldfarb w: the effects of early institutional care on adolescent personality. j exp educ : – , . goldfarb w: effects of psychological deprivation in infancy and subsequent stimulation. am j psychiatry : – , a. goldfarb w: psychological privation in infancy and subsequent adjustment. am j orthopsychiatry : – , b. hinshaw-fuselier s, boris nw, zeanah ch: reactive attachment disorder in maltreated twins. infant ment health j : – , . hodges j, tizard b: the effect of institutional rearing on the de- velopment of eight-year-old children. j child psychol psychi- atry : – , . hodges j, tizard b: social and family relationships of ex-institu- tional adolescents. j child psychol psychiatry : – , . macdonald hz, beeghly m, grant-knight w, augustyn m, woods rw, cabral h, rose-jacobs r, saxe gn, frank da: longitudinal association between infant disorganized attach- ment and childhood posttraumatic stress symptoms. dev psy- chopathol : – , . o’connor tg, bredenkamp d, rutter m: attachment distur- bances and disorders in children exposed to early severe de- privation. infant ment health j : – , . postraumatic stress disorder and reactive attachment o’connor tg, rutter m: attachment disorder behavior follow- ing early severe deprivation: extension and longitudinal fol- low-up. j am acad child adolesc psychiatry : – , . schore an: dysregulation of the right brain: a fundamental mechanism of traumatic attachment and the psychopatho- genesis of posttraumatic stress disorder. aust n z j psychia- try : – , . siegel a, bhatt s, bhatt r, zalcman ss: the neurobiological bases for development of pharmacological treatments of aggressive disorders. curr neuropharmacol : – , . tizard b, rees j: the effect of early institutional rearing on the behavior problems and affectional relationships of four-year- old children. j child psychol psychiatry : – , . address reprint requests to: barbara j. coffey, m.d., m.s. nyu child study center st ave. new york, ny e-mail: coffeb @med.nyu.edu advanced pediatric psychopharmacology [pdf] uropathogenic escherichia coli in the urine samples of iranian dogs: antimicrobial resistance pattern and distribution of antibiotic resistance genes | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / / corpus id: uropathogenic escherichia coli in the urine samples of iranian dogs: antimicrobial resistance pattern and distribution of antibiotic resistance genes @article{yousefi uropathogenicec, title={uropathogenic escherichia coli in the urine samples of iranian dogs: antimicrobial resistance pattern and distribution of antibiotic resistance genes}, author={a. yousefi and s. torkan}, journal={biomed research international}, year={ }, volume={ } } 	a. yousefi, s. torkan 	published 	medicine 	biomed research international resistant uropathogenic escherichia coli is the most common cause of urinary tract infections in dogs. the present research was done to study the prevalence rate and antimicrobial resistance properties of upec strains isolated from healthy dogs and those which suffered from utis. four-hundred and fifty urine samples were collected and cultured. e. coli-positive strains were subjected to disk diffusion and pcr methods. two-hundred out of urine samples ( . %) were positive for e. coli… expand view pdf save to library create alert cite launch research feed share this paper citationsbackground citations view all figures, tables, and topics from this paper 	 table 	 figure 	urinary tract infection 	antibiotic resistance, microbial 	canis familiaris 	amoxicillin 	ampicillin 	amikacin 	cefazolin 	gentamicins 	nalidixic acid 	trimethoprim-sulfamethoxazole combination 	antibiotics 	aminoglycoside n '-acetyltransferase 	trientine 	sulfamethoxazole 	trimethoprim 	internal medicine specialty 	multi-drug resistance 	conflict (psychology) citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency understanding the epidemiology of multi-drug resistant gram-negative bacilli in the middle east using a one health approach 	iman dandachi, a. chaddad, j. hanna, jessika matta, z. daoud 	geography, medicine 	front. microbiol. 	 	 	 	view excerpt, cites background save alert research feed université de montréal-thèse et mémoire 	mohamed sahbi 	 	view excerpt, cites background save alert research feed characterization of antimicrobial resistance among canine urinary isolates in western canada 	rachel courtice 	biology 	 save alert research feed references showing - of references sort byrelevance most influenced papers recency antimicrobial resistance of escherichia coli isolates from canine urinary tract infections 	shao-kuang chang, d. lo, hen-wei wei, h. kuo 	biology, medicine 	the journal of veterinary medical science 	 	 	highly influential 	pdf 	view excerpts, references background save alert research feed antimicrobial susceptibility patterns in urinary tract infections in dogs ( – ) 	c. wong, s. epstein, j.l. westropp 	medicine 	journal of veterinary internal medicine 	 	 	pdf save alert research feed characterisation of bacterial growth and antimicrobial susceptibility patterns in canine urinary tract infections 	u. windahl, b. s. holst, a. nyman, u. grönlund, b. bengtsson 	medicine 	bmc veterinary research 	 	 	 save alert research feed multidrug resistance in escherichia coli strains isolated from infections in dogs and cats in poland ( – ) 	m. rzewuska, m. czopowicz, m. kizerwetter-Świda, d. chrobak, borys błaszczak, m. binek 	biology, medicine 	thescientificworldjournal 	 	 	pdf save alert research feed antimicrobial resistance in escherichia coli isolated from bitches with pyometra and from urine samples from other dogs 	r. hagman, c. greko 	biology, medicine 	veterinary record 	 	 save alert research feed uropathogenic escherichia coli in iran: serogroup distributions, virulence factors and antimicrobial resistance properties 	h. momtaz, a. karimian, + authors n. souod 	medicine, biology 	annals of clinical microbiology and antimicrobials 	 	 	 	view excerpts, references methods save alert research feed virulence factors and o-serogroups profiles of uropathogenic escherichia coli isolated from iranian pediatric patients 	b. dormanesh, f. safarpoor dehkordi, + authors ebrahim khodaverdi darian 	medicine 	iranian red crescent medical journal 	 	 	pdf save alert research feed multidrug-resistant escherichia coli from canine urinary tract infections tend to have commensal phylotypes, lower prevalence of virulence determinants and ampc-replicons☆ 	samuel wagner, d. gally, sally a. argyle 	biology, medicine 	veterinary microbiology 	 	 	pdf save alert research feed enrofloxacin resistance in escherichia coli isolated from dogs with urinary tract infections. 	c. cooke, r. singer, s. jang, d. hirsh 	biology, medicine 	journal of the american veterinary medical association 	 	 save alert research feed microbiological investigation of o‐serogroups, virulence factors and antimicrobial resistance properties of shiga toxin‐producing escherichia coli isolated from ostrich, turkey and quail meats 	behsan hemmatinezhad, f. khamesipour, m. mohammadi, f. s. dehkordi, z. mashak 	biology 	 	 save alert research feed ... ... related papers 	abstract 	figures, tables, and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of 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otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ social farming in the virtuous system of the circular economy. an exploratory research sustainability article social farming in the virtuous system of the circular economy. an exploratory research agata nicolosi ,* , valentina rosa laganà ,* , donatella di gregorio and donatella privitera ���������� ������� citation: nicolosi, a.; laganà, v.r.; di gregorio, d.; privitera, d. social farming in the virtuous system of the circular economy. an exploratory research. sustainability , , . https://doi.org/ . /su received: december accepted: january published: january publisher’s note: mdpi stays neutral with regard to jurisdictional claims in published maps and institutional affil- iations. copyright: © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (https:// creativecommons.org/licenses/by/ . /). department of agriculture, mediterranean university of reggio calabria, reggio calabria, italy; donatella.digregorio@unirc.it department of educational sciences, university of catania, catania, italy; donatella.privitera@unict.it * correspondence: anicolosi@unirc.it (a.n.); vale_laga@yahoo.it (v.r.l.) abstract: multifunctionality and social farming represent forms of resilience and innovation within urban and rural systems, making use of agricultural, rural, natural, and cultural resources to produce multiple benefits and eco-systemic services. social farming (sf) introduces innovative activities capable of representing a factor supporting the competitiveness of the production system and represents a tool for responding to the growing needs of urban and rural populations in social, economic, and environmental terms, in relation to the offer of social- health, social-work, recreative and educational services. sf is an innovative model of territorial, participatory, relational, and community service development that looks to an inclusive, sustainable, fair, and supportive society. its success is linked to the ability to spread within the economic system and become a circular economy model highlighting good practices and as a virtuous example for other companies. the purpose of this work is to examine the role and social impact that social farming has in the environmental, social, and cultural changes of the territories where they are located. case studies in an area of southern italy—the calabria region—were examined with multicriteria methodologies (social network analysis; multiple correspondence analysis) to identify the type of social activity carried out and the propensity to introduce innovations based on services ecosystems on farms. the results show the potential and value of the companies that carry out these social innovation activities. the analysis carried out has drawn some indicative profiles of socially oriented multifunctional companies. keywords: resilience; circular economy; social model innovation; social network analysis; multiple correspondence analysis . introduction and theoretical framework over the years, the dynamics of the agricultural sector have increasingly been oriented towards multifunctionality to create income and employment opportunities for rural populations, to the diffusion of new ideas and practices in rural areas, as well as the discovery of the social value of local resources and developing and increasing social capital and networks of relationships within a given community. the european green deal maps a new, sustainable, and inclusive growth strategy to boost the economy, improve people’s health and quality of life, care for nature, help the fragile categories, and, at the same time. promote social inclusion [ ]. these are concepts that fit well into the virtuous model of a circular economy, a model that aims at decoupling economic growth and development from that of resource consumption. the circular economy model, even before being a mechanism of action, is a real ideology citation. for centuries, humans have used resources without asking him about the problem of future availability; the damage has been twofold, we have pushed ourselves towards their exhaustion and we have reached levels of pollution of ecosystems that are no longer tolerable because they are difficult to reverse. with a view toward circularity, all activities, starting from the extractive ones to the productive ones, must be reorganized so that someone’s waste becomes a resource for someone else. it is a completely different way of thinking and acting, which requires planning and expertise [ ]. sustainability , , . https://doi.org/ . /su https://www.mdpi.com/journal/sustainability https://www.mdpi.com/journal/sustainability https://www.mdpi.com https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://doi.org/ . /su https://creativecommons.org/ https://creativecommons.org/licenses/by/ . / https://creativecommons.org/licenses/by/ . / https://doi.org/ . /su https://www.mdpi.com/journal/sustainability https://www.mdpi.com/ - / / / ?type=check_update&version= sustainability , , of according to this scheme, economic growth and development can proceed with respect for natural resources and focusing on regenerable and clean resources. the new approach to european food value sustainability is an opportunity to improve lifestyles, health, and the environment but also a chance to improve the activities and social services of farms. what the term social actually means should be explained in the context of services and of agriculture. usually, social as a concept relates to human actors and is thus always included as a normative background when addressing sustainability [ ]. social farming (sf) represents a response tool to the application of the european green deal as it satisfies the growing needs of the rural population, both from a social, economic, and environmental point of view and from the point of view of the supply of socio- health, socio-occupational, recreational, and educational services. specifically, sf is defined as the activity characterized by the use of agricultural resources for the realization of socio-work integration paths, co-therapy, provision of services for children, for active aging, and for specific needs of determined local contexts [ – ]. in particular, we mean rather “the paths and practices that through the development of agricultural activities (or related to them) are explicitly proposed to generate benefits for vulnerable groups of the population” [ ]. it appears as a set of activities that sometimes coincide with nature-based solutions (inspired by nature), of subjects (sometimes even fragile) on and with whom to intervene, including the participation of different public and/or private actors interested in operating in this sector. especially, nature-based solutions (nbs) are a powerful tool for farms dealing with contemporary sustainability challenges including degradation of natural capital and ecosystem services, vulnerability to climate change and natural disasters, as well as corresponding health and wellbeing issues. nbs, as defined by eu [ ], are solutions that are inspired and supported by nature, which are cost-effective, simultaneously provide environmental, social, and economic ben- efits and help build resilience (that addresses the capacity of a system to absorb shocks and disturbances and undergo changes in order to maintain approximately the same identity). the concept of nbs is increasingly linked to social farming to understand the development of the care farming sector but also environmental benefits derived from the need to protect biodiversity. at the same time, all activities included in social farming appear as thera- peutic activities, as such activities can become therapeutic not only for people but also for the environment and the cultural landscape [ ]. as such, social farming is an example of multifunctional agriculture that has received little scientific attention so far. there are differences according to the peculiarities of the different territories, and consequently, the actors at the local level use the rules available in the social, health, and agricultural fields, giving rise to protocols, conventions, networks, and agreements that allow the develop- ment of projects, laboratories, and initiatives of various kinds [ ]. social farming is a good combination of agricultural production with health, ecosystem, and social services but also a good example of networks between subjects (farmers, social-health workers, disadvantaged people/beneficiaries, local communities, public administrators, etc.) and different fields (agriculture, tourism, health, etc.) [ ]. this involves a system including business innovation and combined income, environmental care, education, well-being activities, nature therapies, etc. the potential to become an effective and innovative model of territorial, participatory, relational development and service to communities is relevant, as it aims to reunite needs, identities, and protections for citizens, regardless of their abili- ties or fragility, attributing value to work, not only as a source of individual income but also as a founding element of an inclusive, sustainable, fair and inclusive society. joint experiences and feelings of solidarity and authenticity are important contributors to the shaping of a collective identity which contributes to the discussion on how to understand agricultural change, as well as connecting and bridging agriculture with other sectors such as school, tourism, etc. [ ]. in italy, law no. of regulates social farming, enhances the role of services of different types (tourism, social, ecosystems, landscape care, etc.) within the farm, and confirms that in advanced societies most of the income and competitive advantage arises from the offer of increasingly sustainable services. in sustainability , , of europe, the regulatory reference is in the programming cycle of the european structural funds – in the positions at the european level of achieving the sdg goals and in the objective of social inclusion and the fight against poverty (strategic objectives of the europe strategy). despite the presence of many different activities and experiences, sf initiatives in italy mainly aimed at the social and work inclusion of disadvantaged people, according to an inclusive approach [ , , – ]. as argued by moruzzo et al., , while numerous benefits of social farming identified, the impact of social farming on the everyday lives of people with intellectual disabilities varies substantially [ ]. recently, di iacovo ( ) [ ] constructed and highlighted emerging social farming models (depend- ing on existing welfare systems where they are organized) to understand the processes of differentiation at the eu level. a good example explained from guirado et al. ( ) [ ], in the south of europe is the case of catalonia (spain) where sf is a dynamic activity to meet the needs of social groups at risk of exclusion in an innovative way mainly in the areas of health, empowerment, and social inclusion. however, it is necessary to differentiate the italian experience from that mainly developed in northern european countries, more oriented towards care, solidarity, and assistance [ – ]. multidisciplinary and collaborative practices represent the concept of sf and are there- fore aspects also recognized by eu policies. in the literature, the theme of networks, widely explored for some time, in rural development processes that facilitate the cooperative behaviors underlying the networks themselves, less developed with specific reference to sf, due to the recent development of the phenomenon [ ]. mapping multiple social and ecosystem services help to show the spatial distribution of service benefits to agricultural farms, determining where management can obtain value [ , ]. assuming that the social and nature-based solutions concept offers a valuable study to assess planning alternatives and their impact on the constituents of human well-being in a generic, easily communica- ble, and transferable way, we intended to adopt this concept for social innovation of the agricultural sector. the direct link between innovative activity and the best performance of companies that invest or innovate represents one of the main factors supporting the competitiveness of a production system, but it is not the only one. in fact, the current multifunctional agriculture that belongs to the new economy, that (social and solidar- ity economy, new systems, and organizational models) called today, more than ever, to perform functions of great interest in the provision of services for the entire community and to counteract the decline of rural areas. based on this framework, our research aimed to investigate social farming in the south of italy (calabria region) and focus on testing integrated social activities and ecosystem services strategies. our research assumptions are: • hypothesis (h ). companies that carry out social agriculture in calabria carry out eco-systemic services. • hypothesis (h ). does social farming provide circular economy services? yes. h a. in terms of good reuse practices, environmental education and food education laboratories, laboratories for fighting waste and recycling, reuse of waste products “from waste to resource”. h b. in terms of good cultural practices: cultivation techniques such as rotation, absence of monocultures, organic production. • hypothesis (h ). social agriculture represents a form of resilience of calabrian agricultural businesses (responses to new lifestyles, attention to green, use of confiscated land, and legal growth paths). they involve families, schools, institutions. • hypothesis (h ). social farming represents a connection between agricultural systems and urban systems. sustainability , , of • hypothesis (h ). social farming provides educational and social inclusion community services. • hypothesis (h ). social farming provides community services of a therapeutic rehabilita- tion type (alternative/integration to families in support of disability). • hypothesis (h ). social farming provides support services to improve the quality of life and free time (well-being) for local and non-local subjects. • hypothesis (h ). social farming provides cultural and educational community services. • hypothesis (h ). social farming provides fresh and processed food production services. • hypothesis (h ). social farming adheres to spg (solidarity purchase groups) and social networks and unites and connects people, companies, and institutions. in this study, we chose a multi-method approach that uses qualitative and quantitative tools. the integration of different methods can help to provide a clearer picture of the inves- tigated reality. at the basis of the study, there is the assumption on the innovative activity of companies or that there is no single profile of innovation; on the contrary, innovative strategies and methods are highly differentiated also in relation to the competitiveness of the production sectors as demonstrated and applied in the literature on the innovative activity of companies [ , ]. in the first phase, a direct survey carried out through semi-structured face-to-face interviews with entrepreneurs who carry out social farming activities in the calabrian territory. the networks of relationships in terms of human resources and entrepreneurial skills involved in the agri-food, multifunctional and social activities of the social farms interviewed then examined. in a second phase, some data processed through multivariate analysis techniques in order to extrapolate the variables/factors capable of describing the peculiar characteristics of the reality under investigation. we used a network application that validated by the pca (principal components analysis, factor analysis) and by the multiple correspondence analysis (mca). the elaborations carried out with the ucinet and spss software. the rest of the paper organized as follows. section describes the study area. in section , we present methods, while in section , we discuss the results and section summarises the conclusions. . study area . . description of the socio-economic context the research arises from the joint observation of some elements that are nowadays particularly important for agricultural operators, institutional managers, and local com- munities. in fact, the covid- shock hit a southern italy already in recession in terms of production and employment (the collapse of the gdp of the south in stood at − . %, while the average italian variation was − . %; in calabria − . %) [ ]. worrying are the social consequences and the loss of employment. in this context of southern italy, calabria appears particularly fragile due to repercussions on regional economic activity [ ]. to the current problems added the profound changes in the economic development model dic- tated by the green deal as part of the strategies of the european commission to implement the objectives of the united nations agenda . calabria classified as a convergence re- gion by the eu, and this region can make use of resources for the achievement of objectives regarding some important fields such as the circular economy, agri-food, renewable energy, clean mobility, and social equity. all these topics fall within the objectives of those who practice social agriculture. in particular, promoting the transition to a circular economy is an important step to avoid depleting natural resources and permanently altering the sustainability , , of climate. according to the studies carried out by the commission, embracing the model that contemplates the circular economy would allow obtaining economic benefits, creating new jobs, and reducing greenhouse gas emissions. the innovations carried within the scope of ecosystem services represent initiatives to be undertaken to put an end to waste and the excessive exploitation of natural resources and in this context, social agriculture in calabria can do its part. the calabria region covers a total area of , km (including over km of coastline). it has about two million inhabitants, with a population density of about in- habitants per km . the region is % classified as a rural area (rural and intermediate) and more than % of the utilized agricultural area (uaa) currently classified as a less favored area (half mountain area and half the area subject to natural constraints). the average size of the , calabrian farms is ha and % of them are less than ha; only . % of business owners are under the age of . the regional utilized agricultural area is approximately , hectares. the main cultivation is represented by tree crops (especially olive and citrus trees occupy almost % of the uaa), arable land (mainly cereals for the production of grain and vegetables), permanent meadows and pastures. the farms that practice organic farming in calabria are about ( % of the total of regional farms). the area intended for organic production is . % of the regional uaa. calabria is % covered by forests and woods and is the third-largest timber-producing region in italy. of the energy produced by the region, % comes from renewable energy sources. due to their environmental value, the woods of calabria present a diversity of physiognomic and structural typologies that represent a biological, landscape, and cultural wealth, but also an important economic resource. calabria has three national parks, one regional park, and six special protection zones (spas) within sites of community im- portance, natural resources for the promotion and enhancement of sustainable tourism and simultaneously provide environmental, social, and economic benefits and help build resilience. in addition, the forest landscapes, typical of the calabrian territory, help and characterized by forest immersion, understood as a practice that promotes well-being and recreation in parks and forests together with forest therapy. in particular forest therapy is known as a preventive medicine tool spread all over the world based on immersion in the forest (literally it translates to “plunge into the forest”). through this experiential methodology that stimulates the conscious attention of the mind, leveraging on five senses and body sensations arising from the natural context of the forest with both direct and indirect effects on the physical and mental health of users of all age groups [ , ]. . . social farming in calabria and the reference universe according to the official list of the calabria region of january , there were educational farms operating in the region [ ]. this list updated on september with a second list of social farms. however, these numbers are underestimated. as in the rest of italy, social agriculture has also gradually developed in calabria. there are many entrepreneurs and entities that deal with sf and diversified agriculture, as the activities carried out are many. an extra boost to social farming gave thanks to the assignment of assets confiscated from the mafia (law / ). this law has brought many advantages to the territory: activate socio-work integration projects, cooperatives, networks and systems of relations between civil society, institutions and businesses that allow abandoned agricultural structures to return to production, and involvement of individuals with various kinds of difficulties. the activities carried out by social cooperatives on confiscated land (productive, agritourism, educational, social, etc.), are able to create income and employment and to initiate a process of social growth on law respect [ – ]. in the paths of social reuse of confiscated assets, the construction of networks of substantial and constant relationships in the territory (which is a peculiar characteristic of social agriculture), becomes particularly important. in fact, those who do social farming do not work alone, but share problems and solutions with other subjects in the area (stakeholders) with whom it collaborates on a permanent basis, recognizing their skills and commitment: sustainability , , of municipalities, associations, lhas, companies in other sectors or social cooperatives, construction companies, etc. in the calabrian territory, the companies that deal with social agriculture have de- veloped various paths. some agricultural and agritourism companies have more or less recently approached the social field; that is, some associations that previously dealt with social and health assistance and who have decided to become involved in by farming and thus bringing their clients closer to nature and agriculture; others have enhanced nature-related services that were previously only marginal. . materials and methods . . social network analysis (sna) this study constitutes an attempt to apply network analysis to explore the propensity for innovative activities in social agriculture and the ability of companies to introduce ecosystem services into the company that makes it possible to expand the business offers to civil society and local communities. a significant propensity to innovate, in fact, seems to represent an important driver capable of generating the “value portfolio” for the social farmer [ ]. all this in a context in which the mechanisms through which innovative behaviors tend to feed and spread, becoming central to understanding the possibilities for development and the potential scope of initiatives that tend to encourage environmental, economic, and social sustainability. from this point of view, the network of relationships can be represented as a link for the transmission of innovative behaviors. an application of social network analysis (sna) makes it possible to grasp the characteristics of the network and the positioning of the companies interviewed by measuring relevant aspects such as the degree of density of inter-company relations and the degree of centrality of companies in the network. network analysis increasingly applied to different disciplines of the social sciences. networking has recognized as an important strategy for businesses to gain a competitive advantage [ ]. it believed that networks could offer the possibility for a company to seek economies of scale and learning by generating spillover effects [ ] in favor of the territory. furthermore, they positively influence job opportunities in different activities in development paths [ , , ] that allows in developing additional resources by relying on strengths and risk mitigation. networks and network analysis are therefore frequent in business and regional development [ – ]. in this study, the network analysis applied to the ability of social agriculture companies to activate multifunctional ecosystem services (in the perspective of offering multiple services) was mainly based on theoretical studies and methodological applications found in the literature [ , , ]. in particular, the graphic representations, as well as followed indicators obtained with the ucinet version . software [ ] and for the graphic representations the netdraw version . . . factor analysis (fa) and multiple correspondence analysis (mca) the approach to multicriteria methods allows in analyzing complex problems by comparing the variables involved in order to identify the latent variables/factors capable of explaining the correlations. among the information collected through interviews with entrepreneurs who carry out social farming activities, the descriptive analysis provided information on multifunc- tional business choices and in particular on the level of adherence to the different types of social farming activities. based on the answers provided by each interviewee, the multi-criteria analysis structured with the aim of highlighting: • on the one hand, the factors capable of explaining any differences that arise in the choice of different business behaviors and the ways in which technical-managerial skills and paths are developed • on the other hand, identify the profile of the social farms on the basis of the choices made in the application/implementation of the multifunctionality directed at ecosys- tem services of social agriculture sustainability , , of in the first case, we proceeded by applying the factor analysis which allowed us to reduce the complexity of a problem described by a consistent number of variables to a smaller number of latent variables/factors capable of capturing a significant percentage of the overall variability of the departure data. in this case, the most important contribution is to have introduced the structure of entrepreneurs’ attitudes with multidimensionality. in particular, in the context of multivariate statistics, the principal components analy- sis (pca) and the factor analysis (fa) are techniques used for data simplification. the reduction of complexity occurs by limiting the analysis to the main ones (by variance) among the new variables. for the choice of the number of components (sufficient to repro- duce the starting data with a good approximation), we proceeded through the graph of the eigenvalues or “screen plot”. within the graph, the number of components corresponding to the “elbow” point of the line is chosen. its use finds space in the factor analysis proce- dure that we used to identify and analyze the main explanatory variables and in particular to highlight the distinctive attributes that most condition the decision-making processes of entrepreneurs for multifunctional activities of social farming. in the second case, to search for the profiles of entrepreneurs, the multiple corre- spondence analysis (mca) was used, which is more suitable for obtaining behavioral profiles relating to a specific aspect and when the variables have qualitative modalities and/or dichotomous values (in our case, the choices regarding the social activities on which to focus). the mca allows for analyzing the relationships between certain qualitative variables (categorical or nominative), in a small space, that is, less than the number of starting variables [ ]. by its nature, it can be considered a declination of the pca suitable for dealing with problems with categorical starting variables. it is a methodology that lends itself well to examining the correlation between some categories, each expressed by several levels, which, as in our case, can be traced back to the same aspect [ ]. . . data collection the research work was carried out through specific investigations and direct investiga- tions, at the companies and sector operators intercepted in the territory and also supported by direct investigations carried out at public entities, various institutions also using reports, documentation, sector publications, etc. the sample of the companies analyzed operates in the social sectors through agri-food production, offering cultural services, social inclusion of disadvantaged subjects; didactic—training, rehabilitation activities, which also aim at legality. to carry out the research we proceeded with a random sampling stratified by province (on january ) from the lists of the calabria region. the province of cosenza excluded due to logistical difficulties in interviewing companies face to face. in the province of reggio calabria, the lists showed a small number of companies. however, the authors’ knowledge of the territory and the help of opinion leaders and sector operators have made it possible to identify other sf companies that carry out social activities in agriculture. the interviews carried out in the period from february to november . the map below (figure and table ) shows the area of the province of reggio calabria where the greatest number of interviews carried out. in total, companies operating in calabria were taken into consideration: in the province of reggio calabria ( %) and ( %) in other provinces ( . % in catanzaro; . % in vibo valentia; . % in crotone) (table ). as for the type of business, . % are individual social farm, social cooperative ( . %), agricultural cooperative ( . %), association ( . %), and only % of consortium of cooperatives. in our sample, . % are large companies (> hectares), approximately % are medium-large (between – hectares), % are medium-sized (between and hectares) and about % are small and very small enterprises (< hectares). the % ( companies) started social agriculture in the years – , in the remaining cases, the start was in the period – ( %). sustainability , , of figure . research areas in the territory of the cities of reggio calabria, italy. table . companies interviewed. province reggio calabria . % vibo valentia . % catanzaro . % crotone . % type of company individual business . % social cooperatives . % agricultural cooperatives . % associations . % consortia of cooperatives % size >di ha . % – ha . % – ha . % < ha . % starting year of activity – . % – . % source: the authors. individual businesses ( . %), agricultural and social cooperatives ( . %), and as- sociations and consortia of cooperatives ( . %) that carry out social farming activities combine agricultural production activities with the offer of eco-systemic services such as those aimed at recreational and well-being aspects, socio-health and educational aspects, ethics and work placement. the aim of these entities is to improve the living conditions of disadvantaged people and vulnerable groups of the population. at the same time, their usefulness is to create new forms of welfare and hospitality for the entire local community and for the entire territory. in our study, we identified a set of six services to assess when testing the social innovation of farm strategies. specifically, the activities that carried out according to the indications of the italian legislation (law no. / ), have been grouped into the following types: • social work inclusion: aimed at people with disabilities and/or social disadvantages (handicapped, former alcoholics and/or former drug addicts, former prisoners, im- migrants, long-term unemployed, women in difficulty, minors with various kinds of problems in working age, etc.) included in rehabilitation and social support projects (internships, work grants, training courses, care of public parks, social gardens, etc.). social and work placement carried out on land confiscated from the organized crime (’ndrangheta). sustainability , , of • green care: benefits and services that flank and support medical, psychological, and rehabilitative therapies aimed at improving health conditions in mental health and wellbeing and social, emotional, and cognitive functions of people with physical and/or mental handicaps through therapeutic and rehabilitative paths with the landscape, crops, plants, and animals (pet therapy, ortho-florotherapy, forest therapy, etc.). • educational activities: they promote services useful for daily life, welfare activi- ties, and social support activities (day centers, recreational centers for the elderly, agri-nursery/agri-kindergarten). the didactic-educational activity is aimed at en- vironmental and food education; safeguarding biodiversity; the dissemination of knowledge of the territory. moreover workshops for education on legality and the common good; circular economy and food waste reduction workshops; workshops for the recovery of local crafts; cultural and recreational activities to help citizens rediscover peasant values and traditions; commitment and training camps, volun- teering on land confiscated from organized crime (’ndrangheta). last, but not least, schoolwork alternation, educational courses for children and/or teenagers in primary and secondary schools, cultural and recreational activities for adults, etc. • rural well-being: leisure services (e.g., agritourism, rural tourism, social tourism, agri- camping, hiking, nature trails, yoga, wellness kits, guided tours, horseback riding, forest bathing, etc.); • agrifood and marketing innovation: production of raw materials or processed agricultural products; business; branding activities; promotion on social networks; e-commerce; catering; • community network collaboration to local action groups, alternative food net- works, purchasing group, stakeholder network: adhesion to sgp and network. collaborations with public entities. through the information and/or interviews with social agriculture operators, knowl- edge deepened regarding the relationships between human capital, characteristics of social, agricultural/agri-food activities, and the ways in which they relate to the outside world. the information obtained through the administration of a questionnaire that included open and closed questions posed in order to define both the structural, organizational, and managerial characteristics of the companies, such as area, crops, livestock, market; and the types of social activities carried out in individual companies. subsequently, direct contact made through telephone interviews with the owners or managers of the investigated realities, obtaining initial information and appointments for the face-to-face administration of a questionnaire prepared ad hoc. direct contact used through telephone interviews with the owners or managers of the investigated realities but also via “face to face” interviews. to proceed with the research activities, the information extracted from the websites of the various companies first consulted. the questions posed to identify the social agri- culture activities carried out in the intercepted companies highlighted in table . the en- trepreneurial choices are aimed at diversifying company activities and the objective of achieving competitiveness, specific qualitative targets, and the farmer’s “value portfolio”. the interviewees asked to indicate the diversification activities and the social activities carried out on the farm together with the agricultural ones. the answers vary on a likert scale from – (with type the activity is not carried out, with type the activity is very important for the company, and the degree of innovation is considered high). the individual activities envisaged fall within the six groups previously identified in table . the entrepreneurs interviewed also asked for permission to indicate the company name in the search, about % requested anonymity. sustainability , , of table . social and agricultural activities requests to the social farms interviewed. . social work inclusion: volunteer foster homes inclusion of migrants/disadvantaged inclusion of prisoners/former prisoners inclusion of people with disabilities/with addictions social worker inclusion in lands confiscated from the ’ndrangheta free social gardens and social gardens for rent other types of socio-working placement . green care: pet therapy therapeutic gardens others (aromatherapy, phytotherapy, forest therapy, chromotherapy, etc.) . educational activities welcoming families, schools, the elderly, groups (religious, sports, etc.) reception and volunteering for agricultural/agri-food activities educational lab on food education and the fight against waste educational lab on ethics and legal issues plants and sustainability educational lab local handicraft recovery lab other . rural well-being agritourism with accommodation agritourism, hospitality and catering agricamping excursions, nature trails ethical-social tourism yoga, wellness kits, guided tours, horseback riding, forest bathing other . agrifood and marketing innovation organic production pdo—pgi quality marks ethical trade brands (libera, slowfood, fair trade, etc.) product and/or process certifications (iso, etc.) reduced and easily differentiated packaging corporate social responsibility and ethics environmental sustainability certification, energy-saving certification innovations in agri-food production services innovations in agri-food marketing (e) short supply chain e-commerce other . community network collaboration with local action groups, purchasing groups, csa, afn collaboration—agreements with universities and research centers collaboration with other companies in the territory collaboration with social and health services membership of cooperatives, non-profit associations, associations other consistent with the business organization analysis perspective adopted in this re- search, the interviews included questions that proved useful for subsequent processing regarding the origin of the initiatives, resources, decision-making processes, constraint on the development of sf: - the starting year of the social agriculture activity - general and structural characteristics of businesses (type of business, crop orientation, salaried employment and family employment, corporate income on total income, etc.) - the reason for introducing new activities (activities suited to professionalism, new opportunities, and business innovation sustainability , , of - propensity for diversification - propensity to introduce innovation (recent/consolidated introductions) - degree of satisfaction with their work. information also acquired on: - acquisition of technical skills in terms of training (possible attendance of courses and/or if you believe you need training courses) - economic support and contributions obtained - problem and conditioning (theft; threats, extortion; imposition of furniture and/or personnel; usury) and related behaviors (fear, denunciation, trust in institutions). the answers developed to verify and ascertain the level of breadth and depth of the social farming activities, the degree of innovation of the single activities carried out, and the entrepreneurial characteristics. this allowed us to examine the expressed variability of each factor and to encode and group them. . . approach method to determine the profiles of the entrepreneurs, the answers elaborated in relation to the multifunctionality adopted in the company and on the didactic, social, and wellness services provided. the main structural characteristics were also examined (year of business start, legal nature, crop orientation, type of users, etc.), marketing activities, and the ability to network. the variables implemented for the analysis approaches of the sna and of the multicriteria methods (factorial and mca) represent the synthesis of the answers collected with the interviews. they identified by narrowing the dataset into activity groups. the data analysis took place in two phases. in the first place, the coding of the answers through the creation of a database for the coding of the archived interviews conducted made it possible to identify the organizational elements that characterize each case. total of variables organized into six main categories were codified, and four particularly significant sub-categories were also included in the mca processing. the coding work involved the continuous insertion of new variables, the comparison, the repeated arrangement of the data [ , ] and highlighted the need for the continuous reorganization of the analysis model. moving on to the applied multivariate analysis techniques, we have developed a factor analysis to identify the latent dimensions—the simplifying factors summarize and explain the observed scores to interpret the solution obtained. principal components extracted in such a way as to maximize the proportion of variance explained. in a subsequent step, we applied multiple correspondence analysis (mca), to graphi- cally view the emerging empirical differences between the selected cases in order to identify the profiles of social farm operators based on their prevalent activities. four variables added for the application of the mca. this choice allowed the explained variance to be maximized. in the mca analysis the variables were transformed into dichotomous variables (the values – of the likert scale are considered null or not very active and “not decisive for participation in social agriculture” and are indicated with a minus sign (−), while the values – are considered “relevant for social, educational, welfare activities, etc.” carried out by companies. they have been indicated with a plus sign (+). table shows the variables used for the analysis, the relationship with the research hypotheses, and the coding used for the graphic representation methods of the mca. the indicators used reflect the relative positioning of each group of activities within company management and in relation to the introduction of social farming activities and the adaptation of skills. sustainability , , of table . variables used in the analysis models and link with the research hypotheses. variable relations with research hypotheses variable name for mca social work inclusion h : eco-systemic services h : sf represents a connection between agricultural systems and urban systems h : community services of educational and social inclusion type + social work inclusion; − social work inclusion green care h : social farming provides community services of a therapeutic rehabilitation type + green care − green care educational activities h : eco-systemic services h : cultural and educational community services; welfare services h : educational labs and services of good practices of reuse and circular economy + educational activities − educational activities rural well-being h : eco-systemic services h : social farming provides support services to the quality of life and free time + rural well-being − rural well-being agrifood and marketing innovation h : social farming provides fresh and processed food production services h : social farming adheres to spg (solidarity purchase groups); afn, etc h : good cultivation practices, organic production + marketing innovation − marketing innovation community network h : social networks and unite and connect people, companies, institutions h : sf represents a form of resilience of calabrian agricultural enterprises + community network − community network use of confiscated land h : eco-systemic services h : sf represents a form of resilience of calabrian agricultural enterprises h : sf represents a connection between agricultural systems and urban systems h : community services of educational and social inclusion type + use of confiscated land − use of confiscated land social gardens h : community services of educational and social inclusion type h : sf represent a connection between agricultural systems and urban systems h : social farming provides fresh and processed food production services + social gardens − social gardens workshop food waste h : eco-systemic services h : cultural and educational community services; welfare services + workshop food waste − workshop food waste sustainable tourism h : social farming provides support services to the quality of life and free time h : sf represent a connection between agricultural systems and urban systems h : sf represents a form of resilience of calabrian agricultural enterprises + sustainable tourism − sustainable tourism source: the authors. . results . . the social network analysis the interviewed companies diversified their activities over time by combining agri- cultural activity with one or more of those previously identified as social farming activities, and, in particular, those that best meet their structural and organizational needs. in fact, the sustainability , , of evolution of agricultural enterprises towards multifunctionality showed different degrees of diversification (weak/strong in relation to the number of activities carried out other than agricultural ones) and different degrees of level of importance of the activity introduced (low, medium-low, medium-high and high). this level was often connected to the degree of innovation introduced. in fact, the companies interviewed showed a more or less articulated diversification; at the same time, they provided a range of eco-systemic services (themselves considered innovative) within the groups we identified and carried them out with different degrees of innovative intensity. the companies interviewed were placed in a network analysis within the individual groups and the various opportunities of social agriculture were compared and analyzed in a multifunctional perspective. table and figure show the six distinct groups of social agriculture activities in relation to the level of importance of the activity introduced as perceived in the business context. table . groups of social agriculture activities by degrees of importance declared by the companies interviewed. likert scale from to ( = the activity is not carried out, the activity is very important for the company). social work inclusion educational activities green care ruralwell-being agrifood and marketing innovation community network n. % n. % n. % n. % n. % n. % . . . . . total source: the authors. figure . degree of adhesion to the types of social farming activities. likert scale, min = , max = ( the activity is not carried out, the activity is very important for the company) source: the authors. appendix a contains a table with information on the activities performed on a case- by-case basis by the individual companies identified in the six groups of activities. as can be seen in table , the companies interviewed simultaneously carried out different activities within the six target groups identified. the group exam showed that all companies carried out educational activities and wel- come families, schools, groups, etc. the degree of intensity of this activity was considered high in % of cases thanks to the high number of educational workshops offered and to the many types of host families, voluntary activities, etc. only % proposed low or medium-low levels of teaching activities. sustainability , , of thirty-two percent of the companies interviewed regularly included weak groups of society (for example to immigrants, long-term unemployed, former prisoners, disabled, etc.). in %, there was an occasional and low or medium-low inclusion, in these cases, the company welcomed and offered work only occasionally and only to one type (for example to immigrants). in % of cases, the companies did not include socio-working groups of weak groups. green care activities carried out by only % of the companies intercepted while % did not carry them out at all. the companies with activities within the rural well-being group were mainly agri- tourism companies that in many cases have expanded the services offered, combining traditional ones with the new social agriculture activities. in % of cases, this activity was not carried out. as for agricultural, product transformation, and marketing activities, in most cases, product or process innovations introduced to meet the demands of the market and the demands of the specific segment. finally, the ability to network also examined with particular attention to understand the level of participation in the social and economic network of the community network. as we can see, % of the companies interviewed should improve their ability to network. the application of the sna, created with the ucinet software is illustrated in table and in figures – . the affiliation matrix (constructed using the incidence and adjacency matrices) allowed for the grasping of the structural characteristics of the network, the positioning of the groups of activities within it [ , ], and the degree. the latter was measured in terms of the attractiveness of businesses for the six groups of sf activities. data organized in a dichotomous matrix, where the companies were the actors. the groups of activities (the sna events) were considered in relation to the participation the impor- tance attributed to them by the companies: if the companies were very attracted to the activity (which is important to them), or the opposite (activity was not at all or not very important). finally, the standardized matrix elaborated to examine the share of relations out of the total of outdegree and indegree values and their differences with respect to the overall average. figure . sociometric graph “socio-work inclusion” = no activity (red color); = low importance (black color); = medium-low importance (pink color); = medium-high importance (light blue color); = high importance (green color). source: the authors. sustainability , , of figure . sociometric graph “educational activities” = no activity (red color); = low importance (black color); = medium-low importance (pink color); = medium-high importance (light blue color); = high importance (green color). source: the authors. figure . sociometric graph “rural well-being” = no activity (red color); = low importance (black color); = medium-low importance (pink color); = medium-high importance (light blue color); = high importance (green color). source: the authors. figure . sociometric graph “green care” = no activity (red color); = low importance (black color); = medium-low importance (pink color); = medium-high importance (light blue color); = high importance (green color). source: the authors. sustainability , , of table . main positioning indicators of the companies identified in the network (freeman’s degree centrality measures %). companies nrm out degree % nrm in degree % share of relations out of the total difference from the overall average share of relations out of the total difference from the overall average sf . − . . . sf . − . . − . sf . − . . − . sc . . . − . cc . − . . . sc . . . . sf . . . − . sf . − . . . sf . − . . − . sc . − . . − . sc . − . . − . ass . − . . − . ac . − . . . sc . − . . . sf . − . . − . ass . − . . − . sf . − . . − . ac . . . . sc . . . − . sc . . . . sc . . . . sf . . . − . sf . . . . ac . . . − . sc . . . . sf . . . − . sf . . . − . sf . . . . sc . − . . . sc . . . . ac . − . . − . ass . . . − . descriptive statistics nrm out degree nrm in degree mean . . std dev . . network centralization (out degree) = . % network centralization (in degree) = . % source: the authors. table examines the positioning of companies within the social network. the out- degree ( . %) and in-degree ( . %) centrality indicators considered. out-degree and in-degree indicators were calculated as the share of actual social activities out of the total of potential (average data for every single company and average data for all the companies examined). they measured the capacity of the individual companies examined in the context of the calculated average indicators. in processing, they were calculated as the share of actual connections out of the total of potential ones, thus measuring the importance of the company within the activities carried out [ , ]. in our case, the high values of out-degree also correspond to a greater ability to introduce social activities into the company. the companies n. , , and were those that register a good adhesion potential (nrm out degree %), while companies no. and were the worst ( . %), compared to an average degree of centrality equal to . %. as for the normalized value of the indegree, as can be seen, companies n. and recorded a value of % and were those that have joined all the sf activity groups, and for them, these activities were important. the graphic representation of the networks of relations refers to the social activities of each company for each group. in figures – , the red nodes listed in the margin of each graph indicate the companies that did not carry out activities of that group examined from time to time. the size of the nodes together with the different colors that recall those used sustainability , , of in figure indicate the degree of innovation intensity implemented by companies with reference to individual groups of activities. the different colors of the nodes make it easier to read the graph. the networks (figures – ) highlighted the propensity for social innovation of the companies examined in relation to the potential for transmitting good practices within the territorial system. with reference to social work inclusion, the graphic representation of the structure of the relationships of the companies interviewed operating in social farming showed many companies with a medium-low degree of membership. essentially due to the use of forms of social inclusion limited only to some figures such as migrants, disadvantaged subjects, while the inclusion of prisoners or former prisoners, of persons with disabilities or addictions, various forms of voluntary work, was very low, also because the inclusion of these figures requires more complex forms to manage (figure ). figure shows the group of educational activities and the reception of families and groups. as can be seen, the graph highlighted the vitality and the greater degree of intensity offered by most companies. even the companies that carry out activities that were part of the rural well-being group show a certain vitality which, however, appears to be more oriented towards a medium-high degree of innovation. in many cases, these were agritourism companies that have approached the social; companies that offer wellness packages, horse rides, etc. furthermore, as can be seen from the sociographic network, about % of companies did not engage in these activities (figure ). figure , relating to the activities of green care therapeutic services, clearly shows the scarce presence of companies carrying out these specific activities, among those interviewed. therapeutic services require socio-health assistance and high levels of professionalism. the companies that have declared that they provide these types of therapeutic services had high and medium-high degrees of innovative intensity. . . factorial analysis and mca taking into account the results of the social network, it decided to deepen the survey through factor analysis and the analysis of multiple correspondences in order to identify the main components that characterize the companies interviewed and the profiles that characterize social farms. as can be seen from table , the factorial analysis applied to the six groups of educa- tional and social activities in agriculture identified three main components which, when combined, account for . % of the total variance. the verification of the adequacy of the sample examined with the kmo test, the value obtained is . (values > . are considered acceptable). table . results from factorial analysis. total variance explained. component initial eigenvalues extraction sums of squared loadings rotation sums of squared loadings total % of variance cumulative % total % of variance cumulative % total % of variance cumulative % . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . extraction method: principal component analysis. kmo and bartlett’s test: kaiser-meyer-olkin measure of sampling adequacy . . bartlett’s test of sphericity: approx. chi-square , ; df ; sig. . . source: the authors. table shows the rotated component matrix. the first component, which we can define as “enterprises with didactic/agricultural aptitude”, explains . % of the cumula- tive variance, that is, it identified the typical variables of educational farms: the reception of families, school groups, disabled elderly, and groups of adults (such as religious associ- sustainability , , of ations, sportsmen, etc.); educational activities, workshops, and cultural training on food education, legality, circular economy, reduction of food waste, workshops for the recovery of local crafts, etc. table . results from factorial analysis. rotated component matrix a. component social work inclusion . . − . green care − . . . educational activities − . − . − . rural well-being − . − . − . marketing innovation − . − . − . community network − . − . − . type of company − . − . − . extraction method: principal component analysis. rotation method: varimax with kaiser normalization. a. rotation converged in iterations. source: the authors. a variance of . % concerned the second component, namely “companies with a prevalent social vocation”: companies that carried out activities of social work inclusion and training of disadvantaged subjects and fragile employment fringes (unemployed, immigrants, prisoners, ex-prisoners; subjects with addictions). in some cases, they carried out voluntary work and welcome in family homes (women and minors who are victims of abuse; single mothers, etc.). in this component, we also found companies equipped to provide green care (pet therapy and ortho-flora therapy). the third component represented the “vocation to the supply of wellness services/rural well being” of companies, it explained . % of the total variance and was linked to the variables relating to the agritourism vocation and to the services that revolve around this activity (agritourism with accommodation, agritourism with hospitality and catering, agri- camping, social tourism, excursions). in the third component, we also found the type of company (individual agricultural enterprises, social cooperatives, agricultural cooperatives, associations). as for the mca, the analysis conducted by proceeding through successive steps to ascertain and use the variables that showed a high percentage level of variance explained. for each dimension, the analysis calculated the inertia and the eigenvalue, expressing the amount of total variability of the data explained. ten variables selected that provide the highest variance explained and allowed the interpretation of the data. six variables were related to the groups of activities that summarize the multiple diversifications introduced in these particular companies that combine productive activities with social activities. we have also identified four characteristic variables that allow us to examine some peculiar aspects of the sf. compatibility with the study carried out was entrusted to the two-dimensional solution, as it is more effective. as can be seen from table , the results obtained from the multiple correspondence analysis are sufficiently explanatory. the procedure led to the determination of two factorial dimensions corresponding to the eigenvalues that reach the highest total explained variance value. the alpha cronbach was equal to . and was sufficient to exceed the reliability threshold that measures the reliability of the adaptation. the two dimensions explained, in total, . % of the variance: the first dimension explained . % of the variance and the second dimension explained . %. discrimination measures (table ) indicated the components that load the two dimen- sions the most. in this analysis, the first dimension concerned the following variables. firstly, the relationship capacity of enterprises and the community network variable was the highest ( . %), followed by didactic activities ( . %); from the laboratories that look to education against food waste (workshop food waste . %); from the potential offered in the territories by the lands confiscated from organized crime ( . %) and by the social gardens ( . %). lastly, in this first dimension, we found marketing innovation ( . %). sustainability , , of table . results multiple correspondence analysis (mca): model summary. dimension cronbach’s alpha variance accounted for total (eigenvalue) inertia % of variance . . . . . . . . total . . mean . a . . . a mean cronbach’s alpha is based on the mean eigenvalue. source: the authors. table . discrimination measures. discrimination measures dimension mean rural well-being . . . community network . . . sustainable tourism . . . social work inclusion . . . workshop food waste . . . educational activities . . . social gardens . . . green care . . . use of confiscated land . . . marketing innovation . . . active total . . . % of variance . . . source: the authors. in the second dimension, the variables that charge the most were: social inclusion activities ( . %); agritourism and wellness services (rural well-being . %); reha- bilitation, mental, and therapeutic human activities services (green care . %); and sustainable tourism ( . %). through the analysis of the distribution of the variables and of the modalities on a two-dimensional level, we were able to draw conclusions on the meaning of the axes and to identify the profiles of the entrepreneurs in relation to the degree of innovation and their involvement in social activities. figure shows the joint plot of category points and identifies the positions of the original variables in the two-dimensional space identified by the mca, in particular, the contribution of each variable to the dimension is highlighted. dimension one represented greater or lesser diversification and, therefore, the presence of greater (in the positive horizontal semi-axis) or smaller (in the negative horizontal semi- axis) sf activity. dimension two identified the importance of sf’s business for the company, in this case, greater (in the positive vertical semi-axis) and lower (in the negative semi-axis). in particular, examining the results in figure the results are: - in the circle (positive dial for both dimensions) there are the companies that show to a greater extent a “social proper” profile (employment inclusion of fragile sec- tions of the population, therapeutic services, and use of land confiscated from the ’ndrangheta). the inclusion of social activities pushes them towards a good degree of both diversification and innovation (identified by dimension two); - in the triangle (positive dial for dimension and negative dial for the other) we identify the profile of companies that look in particular at “well-being and quality of life” (agritourism and excursions); - in the rectangle one finds the most common activities around the horizontal axis of the positive semi-axis with an “educational and social” profile and which have introduced sustainability , , of interesting levels of marketing, product and/or process innovations, sales networks into the activities undertaken (online sales, spg, campagna amica markets, etc.); - in the negative dial for both dimensions, there are companies that, while diversifying and joining the sf, have shown a “lukewarm” attitude and profile for almost all variables in the application of the various activities relating to social farming. figure . representation of the results, resulting from the mca. source: the authors. . discussion and conclusions the results of the empirical research indicated in calabria there are interesting experi- ences of social farming that present moderate dynamism and innovative aspects, as they are focused on an agriculture model capable of producing income and also eco-systemic ser- vices. the reasons that led to the development of social farming evolved from strong ideals aimed at favoring the ethical value and economic, social, and environmental sustainability of agriculture. in this regard, it should be noted that for the agricultural, agri-food, and rural sectors the need for innovations has gradually widened compared to the past since it is linked to broad and articulated strategic development objectives. it’s not only restricted to company competitiveness in terms of productivity and reduction of production costs but also to quality, market orientation, supply chain organization, territorial competitiveness, protection of the territory and the environment. furthermore, the combination of innovation and rural development has acquired more and more importance for supporting the identification of business models with diversified production activities oriented towards the needs of quality services for rural areas and connections with urban areas such as didactic services, social, rural well-being services, without neglecting the production and the ability to network. in fact, many companies have improved the income obtained from agricultural ac- tivity thanks to the addition of social activities. in particular, this is especially true for small individual enterprises whose income comes mainly or entirely from these activities (agricultural + social). in relation to the entrepreneurial choices aimed at achieving specific qualitative targets and, more generally, competitiveness, in relation to the activities carried out, the prevalent profiles of the companies interviewed in calabria can be highlighted. among them, the sustainability , , of evolution towards multifunctionality and in particular towards sf activities, involves different degrees of innovation, both in relation to the number of social activities exercised and in relation to the degree of innovation introduced. furthermore, the characteristic feature of social farming lies not only in the activities that are carried out but also in the way in which they take shape and are carried out in local contexts. all of this confirms the hypotheses (h –h ) as can be seen also in descriptive table where the companies interviewed simultaneously carry out different activities within the six target groups identified (social work inclusion; educational activities; green care; rural well-being; agrifood and marketing innovation; community network). good practices arise from the skills present in the territory in response to specific needs determined in part by the local fabric (presence or absence of services available for experimenting with paths other than traditional) and in part by the strong motivation that drives entrepreneurs, cooperatives, and associations to include people living in difficult situations, through work placement, training, etc. well, this approach to social farming, for local businesses and in particular for those who work in confiscated lands, represents a practice of social innovation, as alongside the offer of new services it also offers paths for the construction of services in the legality. in fact, an original and interesting aspect of our work, in our opinion, concerns the processing and validation of the results through the two multi-criteria analysis approaches, which allowed us to identify the different “innovator” profiles of operators. although this kind of logic and thinking maybe a growing part of the direction of rural development within the eu, sf could be seen as a positive, new, or ‘revolutionary’ approach elsewhere in the world to inject new energy and vision of agricultural sectors in a phase of economic stagnation and decline of the environmental, cultural and social fabric. in fact, this study has attempted to look at the various companies objectively trying to evaluate not only the activities carried out but also the “model” and the good practices implemented and applied. at the same time, the realities examined have shown the intention to make changes in the future, both at a structural and marketing level and in regard to the inclusion of further projects within the activity of social farming. this result confirms there is enough to exploit the sf and that its development could have positive effects on the agricultural sector. this is very relevant, bearing in mind that sf has a synergic character and combines a large number of economic and non-economic activities (e.g., culture, education) and in the longer term, it has a positive multiplier effect on the development of the local economy. from this analysis, it can be understood that social farming is an activity that is increasing within the investigated territory and despite the countless difficulties encountered by companies and associations, both in terms of legislation and in regard to possible obstacles on the part of criminal activity, to continue to make improvements that can benefit people and the environment. these are concepts that fit well into the virtuous model of a circular economy. the next step in our opinion is to intercept the users, users of the sf service to grasp their perceptions and opinions. therefore, this study fits into a very dynamic and highly relevant phenomenon for the development of the agricultural sector and the economic growth of farms. from the results of the study, a national strategy to support growth is urgently needed, compatible with the objective of territorial rebalancing, in particular for calabria, a region of southern italy that is not particularly developed, in order to seize the unprecedented opportunities that are opening up with the new tools of european funding. the substantial support of public policies given due to the problems caused by the covid pandemic intervenes to mitigate the seriousness of the forecasting framework for . author contributions: conceptualization, a.n. and d.p.; methodology, a.n.; formal analysis, a.n., d.p. and d.d.g.; data curation a.n. and v.r.l.; writing, all the authors; original draft preparation, all the authors; writing—review and editing, all the authors. all authors have read and agreed to the published version of the manuscript. sustainability , , of funding: this research received no external funding. institutional review board statement: not applicable. informed consent statement: not applicable. data availability statement: data set is available upon request. acknowledgments: thanks to mariangela condina and angela russo who collaborated with the authors in collecting data and administering interviews to operators. conflicts of interest: the authors declare no conflict of interest. abbreviations sf social farming csa community supported agriculture afn alternative food networks spg solidarity purchasing group sna social network analysis fa factor analysis mca multiple correspondence analysis nbs nature-based solutions appendix a figure a . likert scale from to ( = the activity is not carried out, the activity is very important for the company) source: the authors. sustainability , , of references . a farm to fork strategy for a fair, healthy and environmentally-friendly food system. available online: https://ec.europa.eu/ food/sites/food/files/safety/docs/f f_action-plan_ _strategy-info_en.pdf (accessed on september ). . muscio, a.; 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[crossref] http://doi.org/ . /hgeo. . . http://doi.org/ . /ecag - http://doi.org/ . / https://www.istat.it/ http://dx.doi.org/ . /sti_scoreboard- -en http://lnx.svimez.info/svimez/ http://lnx.svimez.info/svimez/ https://www.bancaditalia.it/ http://doi.org/ . /j.healthplace. . . https://www.regione.calabria.it/ http://doi.org/ . /cir. http://doi.org/ . / http://doi.org/ . /a http://doi.org/ . /opag- - http://doi.org/ . /s - - - http://doi.org/ . / 	introduction and theoretical framework 	study area 	description of the socio-economic context 	social farming in calabria and the reference universe 	materials and methods 	social network analysis (sna) 	factor analysis (fa) and multiple correspondence analysis (mca) 	data collection 	approach method 	results 	the social network analysis 	factorial analysis and mca 	discussion and conclusions 	 	references ppuurrppoossee:: efficacy trials of preoperative erythropoietin therapy (pet) recommend a dosing schedule that cannot always be adhered to in everyday clinical practice. consequently, we institut- ed a flexible dosing schedule and routinely offered it to anemic patients [hemoglobin (hb)] # g·l– ) undergoing total joint arthroplasty (tja). the purpose of this observational, cohort study was to assess the effectiveness of this practice in reducing red blood cell (rbc) transfusion. mmeetthhooddss:: after obtaining institutional ethics board approval, data were collected prospectively on all patients who underwent tja at our institution from july to june . patients with baseline hb # g·l– were offered pet as follows: one to three sc injec- tions ( , iu for those # kg, and , iu for those > kg) every three to seven days before surgery. since treatment was not randomly assigned, multivariable logistic regression analysis and propensity score case-control matching were used to adjust for baseline differences in patient demographics and perioperative risk factors for rbc transfusion. the adjusted relationship between pet and rbc transfusion was then determined. rreessuullttss:: of the , patients that underwent tja during the study period, ( . %) had a hb < g·l– . of these patients, received pet and their rbc transfusion rate was . %, whereas the transfusion rate was . % in those who did not receive pet (p < . ). the adjusted odds ratio of rbc transfusion with pet was . ( % confidence interval = . – . ). ccoonncclluussiioonn:: pet, used as part of routine clinical practice, is an effective blood conservation modality. objectif : les études de l’efficacité du traitement préopératoire à l’érythropoïétine (tpe) recommandent un dosage programmé difficile à observer au quotidien. nous avons donc institué un programme flex- ible et l’avons offert automatiquement aux patients anémiques [hémoglobine (hb)] # g·l– ) devant subir une arthroplastie artic- ulaire totale (aat). notre étude observationnelle d’une cohorte veut évaluer l’efficacité de cette pratique. méthode : après avoir obtenu l’approbation du comité d’éthique de l’institution, nous avons recueilli les données prospectives sur les patients qui ont subi une aat entre juillet et juin à notre hôpital. le tpe a été offert aux patients dont l’hb de base était # g·l– : de une à trois injections sc ( ui pour un poids # kg et ui pour un poids > kg) tous les trois à sept jours avant l’opération. le traitement n’étant pas assigné au hasard, une analyse de régression logistique multivariée et un appariement sujet- témoin du score de propension ont été utilisés pour ajuster les dif- férences dans les caractéristiques des patients et les facteurs de risque périopératoires de transfusion de cg. la relation ajustée entre le tpe et la transfusion de cg a ensuite été déterminée. résultats : des patients qui ont subi une aat pendant la péri- ode étudiée, ( , %) avaient une hb < g·l– . de ces patients, ont reçu le tpe et leur taux de transfusion de cg a été de , %, tandis qu’il a été de , % chez ceux qui n’ont pas reçu de tpe (p < , ). le risque relatif ajusté de transfusion de cg avec le tpe était de , (intervalle de confiance de % = , – , ). conclusion : le tpe utilisé dans le cadre d’une pratique clinique courante est une modalité efficace de conservation du sang. can j anesth / : / pp – ggeenneerraall aanneesstthheessiiaa erythropoietin is an effective clinical modality for reducing rbc transfusion in joint surgery [le traitement à l’érythropoïétine réduit efficacement les transfusions de culots globulaires en chirurgie orthopédique] keyvan karkouti md,*† stuart a. mccluskey md,* lucia evans rn,‡ nizar mahomed md,§ mohammed ghannam bsc,* roderrick davey md§ from the departments of anesthesia* and health policy, management, and evaluation;† the department of nursing, perioperative blood conservation;‡ the department of surgery, division of orthopedic surgery§; university health network, university of toronto, toronto, ontario, canada. address correspondence to: dr. keyvan karkouti, department of anesthesia, toronto general hospital, eaton north, - , university health network, elizabeth street, toronto, ontario m g c , canada. e-mail: keyvan.karkouti@uhn.on.ca dr. karkouti is supported by a cihr/cbs new investigator award. drs mccluskey and karkouti have received speaker’s fees and research support from ortho-biotech. accepted for publication may , . revision accepted january , . karkouti et al.: preopereative epo he efficacy of preoperative erythropoietin (epo) therapy (pet) for increasing patients’ hemoglobin (hb) concentration and reduc- ing exposure to allogeneic red blood cell (rbc) transfusion in orthopedic surgery has been demonstrated by several double-blinded randomized clinical trials. – feagan and his associates, in a multi- centre trial in which patients undergoing primary total hip arthroplasty (tha) who had a pre-treatment hb concentration of less than g·l– and did not predonate blood were randomized into three groups to receive four weekly doses of epo ( , or , iu) or placebo, found that pet increased the preoper- ative hb concentration by more than g·l– and reduced the frequency of rbc transfusion by more than %. laupacis et al. combined the results of three of the other trials (including a total of patients) – and found that the overall odds ratio of rbc transfusion in patients who received pet was . [ % confidence interval (ci) . – . ]. because of this clear efficacy, pet gained regulato- ry approval in for use in anemic patients (pre- treatment hb concentration of > g·l– to # g·l– ) undergoing major surgery to reduce allogeneic rbc transfusions. the use of epo for this indication, however, remains quite limited. a multinational sur- vey published in found that pet was used in fewer than % of hospitals in all surveyed countries except in canada and japan, where it was used in % and %, respectively. the results of a survey sent to , hospitals in the united states in showed that pet was used routinely in only % of the hospi- tals. a more recent practice review of canadian hos- pitals ( ) found that pet was used in fewer than % of eligible patients undergoing total joint arthro- plasty (tja). one reason for this limited use of pet in clinical practice may be the impracticality of the dosing sched- ule as recommended by the efficacy trials, particularly the required lead-time of four weeks. another reason may be the high-cost of the recommended dosage – the full recommended dose of four , iu injec- tions of recombinant epo costs about can $ , . because of these limitations, starting in july , we implemented a more practical pet dosing sched- ule for eligible anemic patients undergoing tja at our institution. instead of the recommended four injec- tions of epo, we treated patients with a maximum of three injections. instead of using a dose of iu·kg– , we used a total of , iu for patients less than kg and , iu for those more than kg. in cases where the lead-time was less than three weeks, we reduced the number of injections (allowing one or two injections rather than three) or the frequency of injections (to as little as every three days apart as opposed to weekly), or both. the objective of this observational study was to assess the effectiveness of this more practical dosing schedule for pet in reducing allogeneic rbc transfu- sion in patients undergoing tja. mmeetthhooddss patient population and management since july , all patients who were scheduled for elective tja (hip or knee) were assessed by our perioperative blood conservation program (pbcp) where, depending on their baseline hb concentration (hbbase), they were offered one of two blood conser- vation modalities as part of routine clinical care: pre- operative autologous donation (pad) if hbbase was > g·l– , or pet if hbbase was # g·l – . the hbbase cut-off was used as a general guideline: a few patients were offered pad or pet outside the stated criteria, and in certain cases [such as revision tha or bilateral total knee arthroplasty (tka)] both modali- ties were offered to patients. patients were not offered pet if they had contraindications to epo (allergy, severe coronary artery disease, recent thromboembol- ic events, uncontrolled hypertension, carotid artery disease (> % stenosis)), if they had active infection or inflammation, or if they had anemia other than ane- mia of chronic diseases. during the study period, the pbcp was supported by ortho-biotech, the canadian supplier of epo. this support consisted of % reim- bursement for the costs of epo (with the remaining % provided by university health network) to any patient who did not have full third-party insurance coverage (approximately % of eligible patients) and allowed us to offer patients a more organized approach to perioperative blood conservation. ortho- biotech was not involved in any other aspect of the study, including treatment algorithm design, data analysis, or manuscript preparation. patients who met the hbbase cut-off, had sufficient time before surgery for pet therapy, and opted for treatment received one to three injections of sc epo ( , iu for those # kg, and , iu for those > kg) every three to seven days before surgery, depending on the amount of time available to surgery. in addition, they received dietary iron supplementation (various formulations providing mg elemental iron per day). these patients were considered as the treat- ment group for the purposes of this study. patients who met the hbbase cut-off but did not have sufficient time for pet therapy or opted against therapy were consid- ered the control group. these patients were also t advised to take dietary iron supplementation. patients who did not meet the hbbase cut-off or who opted for pad were excluded from the study. other than the above interventions, patient care was not modified in any way. the personnel in the pbcp had no input regarding any other aspect of the patients’ perioperative care, including blood product transfusion decisions. the clinical team, however, was aware of patients’ preoperative therapy. the rbc transfusion guidelines in use at the hospital during this time period are presented in table i. data collection after obtaining institutional ethics board approval, data were collected on all patients who underwent elective tja at our institution from july to june . the following information was collected: patient demographics; american society of anesthesiologists’ (asa) classification of medical sta- tus; baseline serum creatinine concentration; hb con- centration before pet (baseline), before surgery, nadir post surgery, and at the time of hospital dis- charge; duration of surgery; exposure to blood prod- ucts; and postoperative length of hospital stay. data analysis sas™ version . (sas institute, inc., cary, nc, usa) was used for the statistical analyses. categorical variables were summarized as frequencies and percent- ages, continuous variables as means and standard devi- ations if normally distributed and medians and th and th percentiles or range if not normally distrib- uted. the one-way anova with duncan post hoc analysis was used to determine the relationship between the number of epo injections and the increase in hb concentration. as noted above, only patients whose hbbase was g·l– or less and did not receive pad were includ- ed in the analysis. the characteristics and outcomes of those who received pet were compared to those who did not receive pet using the t test or wilcoxon rank sum test for continuous variables and the chi-squared or fisher’s exact test for categorical variables. since pet was not randomly assigned, two statisti- cal methods were used to adjust for baseline differ- ences in patient demographics and perioperative risk factors for rbc transfusion. one method was the use of multiple logistic regression to adjust for any signif- icant (p # . ; a standard criterion for selection of can- didate variables to be used in multivariable analysis) between-group differences. a second method was the use of propensity analy- sis to match patients who received pet to similar patients who did not receive pet. the propensity score derivation model was constructed using multi- variable logistic regression to model for probability of rbc transfusion without inclusion of pet as a pre- dictor variable. this model was then used to calculate the propensity score of rbc transfusion for each patient. using a sas macro,a patients receiving pet were individually matched to unique control patients based on their propensity score using a → greedy matching technique (cases were first matched to con- trols that had an identical propensity score to five dig- its. those that did not match were then matched to controls on four digits of the propensity score. this continued down to a one-digit match on the propen- sity score for those that remained unmatched).a a parsons ls. reducing bias in a propensity score matched-pair sample using greedy matching techniques. proceedings of the twenty-sixth annual sas users group international conference, cary, nc, usa, . canadian journal of anesthesia table i institutional red blood cell transfusion guidelines in effect during the study period* hemoglobin (g·l– ) risk strategy > very low avoid – low avoid; may occasionally require transfusion based on clinical evaluation† – moderate try to avoid; base transfusion decision on clinical evaluation† < high usually requires transfusion †clinical evaluation: volume, respiratory, cardiac, and cerebrovas- cular status, duration of anemia, symptoms, ongoing blood loss, presence of coagulopathy *adapted with permission from: winslow rm. a physiological basis for the transfusion trigger. in: spiess bd, counts rb, gould sa (eds). perioperative transfusion medicine, st ed. baltimore: williams & wilkins; : – . table ii procedure and transfusion breakdown in the total sample (n = , ) procedure n % transfused tha, primary . % tha, revision . % tka, primary . % tka, revision . % tka, bilateral . % tha = total hip arthroplasty; tka = total knee arthroplasty. rreessuullttss during the study period, , patients underwent elective tja at our institution; of them received pad and were excluded from analysis. of the remain- ing , patients, ( . %) received rbc transfu- sions (see table ii for breakdown according to procedure). upon presentation to the blood conserva- tion program, ( . %) were anemic (hbbase # g·l– ), . % ( / ) of whom received rbc trans- fusions. in comparison, . % ( / ) of non-ane- mic patients received rbc transfusions (p < . ; four had missing hb). of the anemic patients, ( . %) received pet. of those who did not receive pet, patients were excluded due to contraindica- tions: eight who were considered at high-risk for thromboembolic events, and four for having an active inflammatory condition. the remaining patients who did not receive pet either were not assessed early enough before their surgery or opted against treatment. the number of doses given to patients and their hb response is presented in table iii. in the anemic patients, the rate of rbc trans- fusion was . % ( / ) in those who received pet compared with . % ( / ) in those who did not (p < . ; odds ratio = . , % ci = . – . ). the number of rbc units transfused in the pet and no pet groups were: mean ± sd = . ± . and . ± . ; median (range) = ( – ) and ( – ), respectively; p < . . the characteristics of the two patient groups are presented in table iv. the hb concentration increased by . ± . g·l– in the pet group. the nadir and discharge hb concentra- tions were also higher in the pet compared with the no pet group. when multivariable logistic regression was used to adjust for potential confounders, the following vari- ables remained in the model: asa classification, age, weight, sex, renal dysfunction, baseline hb concentra- tion, pet, duration of surgery, surgeon, and proce- dure (categorized as primary tha, revision tha, pri- mary tka, and revision or bilateral tka). the logis- tic regression model – which fitted the data well (hosmer-lemeshow goodness-of-fit test = . ; p = . ) and was accurate (receiver operator characteristics area under the curve = . ) – showed that the adjust- ed odds ratio of rbc transfusion with pet was . ( % ci = . – . ; p = . ). using propensity analysis, of the patients who received pet were successfully matched to con- trol patients. the characteristics of the cases and con- trols are compared in table v. patient characteristics were similar in the two groups except for age: cases were younger than controls. the number of rbc units transfused in the cases and controls were: mean ± sd = . ± . and . ± . ; median (range) = ( – ) and ( – ), respectively; p < . . the rate of rbc transfusion was . % ( / ) in the cases and . % ( / ) in the controls (p < . ; odds ratio = . , % ci = . – . ). ddiissccuussssiioonn in this observational cohort study, we found that pet was highly effective in reducing perioperative rbc transfusions when it was used in anemic (hb # g·l– ) patients undergoing elective tja as part of rou- tine practice that employed a more flexible dosing reg- imen than those used in randomized clinical trials. the most recent clinical trials used four weekly sc injections of iu·kg– (or approximately , iu) of epo starting three to four weeks before surgery. , in our study, however, patients received one to three sc injections of , iu or , iu of epo given every three to seven days. despite this lower, more flexible dosing regimen, our results were comparable to those of the randomized clinical trials. in our study, pet was associated with a . ± . g·l– increase in the average hb concentration and was associated with a % reduction in the absolute risk of rbc exposure. after adjustment for potential confounders, the odds ratio for rbc transfusion with pet was . ( % ci = . – . ). these findings were similar to those of randomized controlled trials, which found that pet increased the preoperative hb concentration by approximately g·l– and reduced the frequency of rbc transfusion by approximately %, and that the odds ratio of rbc transfusion with pet was . ( % ci . – . ). since this was an observational study, the validity of our results depends on the appropriateness of our management of important sources of bias. one impor- tant bias is susceptibility bias, which occurs if variables that are associated with a better outcome occur more karkouti et al.: preopereative epo table iii hemoglobin response to epo number of doses of epo n hb increase (g·l– ) (mean ± sd)* . . ± . . ± . . ± . epo = preoperative erythropoietin; hb = hemoglobin. *difference in response significant (p < . ) between each group using two- way analysis of variance and duncan’s post hoc analysis. frequently in the treatment group. to control for this bias, we used multivariable modelling and propen- sity case-control matching to adjust for potential con- founders previously shown to be related to rbc transfusion in patients undergoing tja as well as other surgical procedures. – this does not, howev- er, correct for the effects of unmeasured confounders on the observed association. an example of a potential confounder is coronary artery disease, the presence of which may lead to a higher rbc transfusion trigger. although we adjusted for patients’ asa classification, which is a general measure of medical status, we did not correct for presence of coronary artery disease. another type of bias is proficiency bias, which occurs if the treatment being studied is supplemented by concomitant additional therapy. additional ther- canadian journal of anesthesia table iv comparison of patients based on preoperative epo therapy variable* class epo† no epo† p value (n = ) (n = ) pre-treatment hb (g·l– ) . ± . . ± . = . preoperative hb (g·l– ) . ± . . ± . < . nadir hb (g·l– ) . ± . . ± . < . discharge hb (g·l– ) . ± . . ± . < . procedure tha: primary . % . % = . ‡ tha: revision . % . % tka: primary . % . % tka: revision or bilateral . % . % asa iii or iv . % . % = . gender female . % . % = . renal dysfunction yes . % . % = . age (yr) . ± . . ± . < . height (cm) ± ± = . weight (kg) . ± . . ± . = . duration of surgery (min) ± ± = . length of stay (days) ( , ) ( , ) = . *see text for definitions. †mean (± sd) if normal distribution; median ( th, th percentile) if not normal distribution; percent if categor- ical. ‡primary tha or tka vs other. epo = preoperative erythropoietin; hb = hemoglobin; tha = total hip arthroplasty; tka = total knee arthroplasty. table v comparison of propensity matched cases and controls variable* class epo† no epo† p value (n = ) (n = ) pre-treatment hb (g·l– ) . ± . . ± . = . preoperative hb (g·l– ) . ± . . ± . < . nadir hb (g·l– ) . ± . . ± . < . discharge hb (g·l– ) . ± . . ± . = . procedure tha: primary . % . % = . ‡ tha: revision . % . % tka: primary . % . % tka: revision or bilateral . % . % asa iii or iv . % . % = . gender female . % . % = . renal dysfunction yes . % . % = . age (yr) . ± . . ± . < . height (cm) ± ± = . weight (kg) . ± . . ± . = . duration of surgery (min) ± ± = . length of stay (days) ( , ) ( , ) = . *see text for definitions. †mean (± sd) if normal distribution; median ( th, th percentile) if not normal distribution; percent if categor- ical. ‡primary tha or tka vs other. epo = preoperative erythropoietin; hb = hemoglobin; tha = total hip arthroplasty; tka = total knee arthroplasty. apy in this study would be the use of additional blood conservation modalities in the pet group. our pro- tocol for iron therapy may have introduced such a bias. preoperative oral iron therapy has been shown to improve preoperative anemia independently of pet. in this study, it is possible that the likelihood of iron therapy was higher in patients who received pet com- pared to those who did not receive pet since the for- mer were prescribed iron therapy whereas the latter were only advised to take iron. this difference, if it exists, could account for some of the observed treat- ment effect. proficiency bias would also result if those making transfusion decisions, who were aware of patients’ pre- operative therapy, used lower rbc transfusion triggers in patients who received pet. this, however, is unlikely given that the nadir and discharge hb con- centrations were higher in the pet group. a third form of bias is detection bias, which occurs if the outcome of interest is more frequently diag- nosed or detected in the treatment group due to dif- ferences in patient monitoring and follow-up. detection issues were not a concern in this study because perioperative rbc transfusion is an objective outcome, and we used the most accurate data source – the transfusion laboratory database – to identify the patients who received rbc transfusions. having excluded or managed important sources of bias, we can therefore conclude that pet is effective in routine clinical practice. but does this mean that pet should be used as part of routine clinical care? the answer to this question depends to a large extent on the cost-effectiveness of pet. in the one study that has for- mally examined the cost-effectiveness of pet, the esti- mated cost of pet per quality adjusted life year gained was about million us dollars, a value that clearly does not favour the routine use of pet. this analysis, however, did not properly model for all the direct and indirect health-effects of rbc transfusion and its avoid- ance. for example, a review of the economic analyses of pad shows that the cost-effectiveness estimates for pad are also clearly unfavourable when these health- effects are not included in the analysis, – but once they are included, the estimates become favourable. – in addition, pet, by increasing hb concentration throughout the hospital stay, may improve functional recovery as has been demonstrated in patients undergo- ing surgery for hip fracture. , moreover, the economic analysis of pet also did not account for the substantial cost-effectiveness improvements that can be achieved by modifying the dosing schedule or by improving patient selection cri- teria such that pet is offered only to those patients who are at high-risk of requiring rbc transfusion. for example, our patients received an average of about , iu of epo, which is more than % lower than the dose used in the economic analysis of epo. despite this reduced dose, the treatment effect was similar to those of previous studies, the results of which were used in the economic analysis. this dose reduction alone, therefore, translates to a % improvement in the cost-effectiveness of pet. further improvements in cost-effectiveness can be achieved if the third injection of epo is eliminated for patients in whom the hb concentration exceeds g·l– after two injections. thus, even though the ‘true’ cost-effectiveness of pet is yet to be determined, because of its excellent safety profile, and this study’s finding that it is effec- tive when used in routine clinical practice, pet may be the preferred method of blood conservation for anemic patients undergoing tja. rreeffeerreenncceess feagan bg, wong cj, 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study explores the effective outcomes of a structured cognitive stim- ulation treatment to improve cognition and behavioral symptoms in people with dementia (pwds), using a randomized controlled clinical trial. methods: thirty pwds were divided into three groups: experimental (treated with cognitive stimulation), placebo (treated with occu- pational therapy), and control (continuing with the usual activities of the nursing home). as- sessment, at baseline and after a period of weeks, was performed using the clinical demen- tia rating scale, activities of daily living, mini-mental state examination, esame neuro- psicologico breve , geriatric depression scale and behavioral pathology in alzheimer’s disease scale. results: only the experimental group improved its performance in cognitive tests (p < . ) and showed a significant decrease in behavioral symptoms (p < . ) after the treatment. conclusions: the results suggest that a cognitive stimulation treatment for pwds would improve not only their cognition, but also behavioral symptoms. © s. karger ag, basel introduction the increasing prevalence of dementia as a public health problem results from the rapid aging of the population. that dementia remains incurable is aggravating this situation. the current limits of the effectiveness of pharmacotherapies highlight the value and the significant role of nonpharmacological interventions in delaying the progression of the disease and the functional decline. the class of nonpharmacological therapies includes cognitive stimulation published online: august , e x t r a daniela mapelli, phd university of padua department of general psychology via venezia , it– padua (italy) e-mail daniela.mapelli @ unipd.it www.karger.com/dee doi: . / this is an open access article licensed under the terms of the creative commons attribution- noncommercial . unported license (cc by-nc) (www.karger.com/oa-license), applicable to the online version of the article only. distribution permitted for non-commercial purposes only. http://dx.doi.org/ . % f dement geriatr cogn disord extra ; : – doi: . / e x t r a mapelli et al.: cognitive stimulation in patients with dementia: randomized controlled trial www.karger.com/dee © s. karger ag, basel treatment. cognitive stimulation typically involves a set of tasks designed to reflect cognitive functions such as attention, memory, language, and problem solving, combined with a reality orientation session. this training takes place in individual or group sessions with a range of difficulty levels. the fundamental assumption is that practice with specific cognitive function tasks may improve, or at least maintain, functioning in a given domain and that any effects of practice will generalize and induce a general improvement of cognitive and social functioning. recent reviews of cognitive stimulation [ , ] conclude that its effects on cognition, communication, social interaction, well-being, and quality of life are well documented. in contrast, in the cochrane review [ ] , the authors maintain that there are no indications that cognitive stimulation is associated with changes in mood or behavior and that there is much less evidence available regarding these domains compared with that available for changes in cognition. behavioral and psychological symptoms of dementia represent a very frequent problem that undermines the quality of life of people with dementia (pwds) and produces psycho- logical and financial encumbrances for their caregivers. many dementia practice guidelines recommend nonpharmacological measures as the main treatment for behavioral and psycho- logical symptoms of dementia [ – ] , and recent studies report the effectiveness of nonphar- macological interventions for improving the quality of life of pwds [ , ] . there is a lot of evidence for the effectiveness of the nonpharmacological therapies in improving cognition [ – ] , behavior [ – ] , mood [ – ] , and activities of daily living [ ] , in delaying institutionalization [ ] , and in improving the quality of life of patients and caregivers [ , ] . a recent systematic review [ ] reports, regarding the positive outcomes of nonpharmacological therapies, that the best evidence base is for cognitive stimulation treatment, although this approach is labor-intensive, and requires further evaluations of cost- effectiveness. however, even after many studies and other evidence, the evaluation of the effectiveness of the cognitive stimulation treatment remains uncertain because some meth- odological issues often make the interpretation of the research data problematic and because it requires further evaluation of its cost-effectiveness. in many studies, the main limitation is represented by the definition of a control group or a condition essential for the evaluation of a therapy’s effectiveness. whereas the use of usual care or minimal attention conditions for the control group can lead to positive results, intervention specificity becomes unclear when the experimental and control groups are exposed to similar social attention [ ] . in the recent literature, there is not a clear theoretical model with a definite agent intended to result in a specific outcome, and the number of high- quality randomized controlled trials remains low [ ] . for these reasons, this study aims to investigate the effects of a structured cognitive stim- ulation treatment on improving cognition and activities of daily living in pwds by a comparison between a placebo and a control group and to explore the differences between mild and moderate dementia. in addition, this paper intends to investigate the effects of the cognitive stimulation treatment on behavioral and psychological symptoms of dementia, assuming the key role of cognitive deficits in the development of disruptive and challenging behaviors. materials and methods participants a total of participants were recruited at the nursing home, centro servizi per anziani, in monselice (padua), italy. they were evaluated for their eligibility by the neurologist and neuropsychologist of the centro servizi per anziani. inclusion criteria included subjects at stage or on the clinical dementia rating scale (cdr) [ ] and with a mini-mental state http://dx.doi.org/ . % f dement geriatr cogn disord extra ; : – doi: . / e x t r a mapelli et al.: cognitive stimulation in patients with dementia: randomized controlled trial www.karger.com/dee © s. karger ag, basel examination (mmse) [ ] score of – . they were able to communicate and understand verbal and written language and physically able to participate in a meaningful assessment and a rehabilitation program. subjects who suffered from a learning disability or psychiatric or internal disorders, such as schizophrenia or alcoholism, were excluded. taking these inclusion criteria into account, participants were enrolled: with a diagnosis of alzheimer’s disease, with vascular dementia, and with mixed dementia, according to dsm-iv-tr criteria [ ] . participants were randomized into three groups, i.e. experimental, placebo, and control groups, following a simple computerized randomization technique ( fig. ). in each group, there were patients with mild dementia, who scored – on the mmse and on the cdr, and patients with moderate dementia, who scored – on the mmse and on the cdr. the experimental, placebo, and control groups did not differ in terms of age, years of education, and mmse score (p > . ) ( table ). the study was approved by the local ethics committees, and written informed consent was obtained from the patients and/or their family caregivers. assessment/outcome measures to provide a global rating of dementia severity, the cdr [ ] was used. this is a -point scale ( = no dementia; . = possible dementia; = mild dementia; = moderate dementia; = severe dementia) completed by the researcher. cognitive functions were evaluated using the mmse [ ] and esame neuropsicologico breve (enb ) [ ] , a neuropsychological battery that includes subtests: digit span, immediate and delayed recall prose memory, randomized (n = ) excluded (n = ) • not meeting inclusion criteria (n = ) • declined to participate (n = ) • other reasons (n = ) allocated to control group (n = ) received allocated intervention (n = ) did not receive allocated intervention (n = ) allocated to placebo group (n = ) received allocated intervention (n = ) did not receive allocated intervention (n = ) allocated to experimental group (n = ) received allocated intervention (n = ) did not receive allocated intervention (n = ) lost to follow-up (n = ) discontinued intervention (n = ) lost to follow-up (n = ) discontinued intervention (n = ) lost to follow-up (n = ) discontinued intervention (n = ) analyzed (n = ) excluded from the analysis (n = ) analyzed (n = ) excluded from the analysis (n = ) analyzed (n = ) excluded from the analysis (n = ) enrollment allocation analysis follow-up assessed for eligibility (n = ) fig. . flow diagram of the randomized controlled trial. http://dx.doi.org/ . % f dement geriatr cogn disord extra ; : – doi: . / e x t r a mapelli et al.: cognitive stimulation in patients with dementia: randomized controlled trial www.karger.com/dee © s. karger ag, basel brown peterson technique, trail making test parts a and b, token test ( items), word phonemic fluency, abstraction, cognitive estimation test, intricate figures test, house figure copy, daisy drawing test, clock drawing test, and ideomotor apraxia test. all enb subtests were measured in the traditional way, but only the trail making test score was considered as the correct number of responses instead of time of execution. an enb total score was calculated to obtain a general measure of the cognitive status [ ] . as a measure of the func- tional status of the patients, the activity of daily living scale was used [ ] , completed by the caregivers and investigating personal daily care, with a score from to . the behavioral pathology in alzheimer’s disease rating scale (behave-ad scale) [ ] was used to assess the frequency of problem behaviors during dementia (behave-ad symptoms) and their impact on the caregiver (behave-ad global) in the previous weeks. the first part of this instrument measures behavioral symptoms, grouped into categories; each symptom was scored, regarding its severity, on -point scales, and the total symptom score was from (normal) to . the second part of the instrument consists of a single question for the caregiver that provides a total global score from (no stress) to . finally, to screen and rate geriatric depression, the geriatric depression scale was used [ ] , which is a self-report questionnaire giving a global scoring from to . all these tests and scales were administrated in the three groups at baseline at the beginning and weeks later. the three groups were evaluated by a blinded rater, who did not know the group allocation of the participants. the rater was not the same person who conducted the intervention treatments. table . demographic characteristics and test scores before (pre) and after (post) the weeks’ treatment, with significant interaction using the fisher post hoc test (mean ± sd) experimental group placebo group control group pre (n = ) post (n = ) pre (n = ) post (n = ) p re (n = ) post (n = ) age, years . ± . . ± . . ± . education, years . ± . . ± . ± . cognition cdr . ± . . ± . . ± . . ± . . ± . . ± . mmse . ± . ± . . ± . . ± . . ± . . ± . enb irpm drpm bpt s wpf abstraction cdt enb .tot . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . . ± . ± . . ± . ± . . ± . . ± . ± . ± . . ± . . ± . . ± . behavior behave-ad symptoms . ± . . ± . . ± . . ± . . ± . . ± . irpm = immediate recall prose memory; drpm = delayed recall prose memory; bpt = brown-peterson technique; wpf = word phonemic fluency; cdt = clock drawing test; enb .tot = enb total score. significant difference within the experimental group (fisher post hoc test with bonferroni correction for multiple comparisons; p < . ). significant difference between the experimental group and the other two groups at post-treatment evaluation (fisher post hoc test with bonferroni correction for multiple comparisons; p < . ). http://dx.doi.org/ . % f dement geriatr cogn disord extra ; : – doi: . / e x t r a mapelli et al.: cognitive stimulation in patients with dementia: randomized controlled trial www.karger.com/dee © s. karger ag, basel intervention after a formal assessment, the participants were randomly allocated into experimental, placebo, and control groups, each composed of patients. the experimental and the placebo groups received weeks of intervention: cognitive stimulation treatment for the experi- mental group and occupational therapy for the placebo group. both groups were involved in a -session program that ran daily over weeks, for h per session or h weekly. the control group participants continued with the usual activities program at the nursing home while the group therapies were in progress. the cognitive stimulation treatment started with initial personal, spatial, and temporal orientation sessions and proceeded with a structured stimulation for the cognitive domain, consisting in individual exercises [ ] , specific for areas (memory, language, spatial and temporal orientation, attention, and logic) and grouped into levels of difficulty. the therapist administered or cognitive paper/pencil exercises in the subgroup with mild dementia and or exercises in the subgroup with moderate dementia. the daily exer- cises were selected for each cognitive domain and the range of cognitive exercises was fixed weekly, starting with a low level of difficulty and becoming progressively more difficult. therefore, the same number of paper/pencil exercises for each cognitive domain was selected, stimulating all cognitive functions in a balanced way. finally, the mild dementia subgroup performed exercises, while the moderate dementia subgroup performed exercises, excluding the logic domain exercises, as the participants were not capable of performing them. the placebo group daily performed a series of programmed activities: read and debate the newspaper, play bingo, sing, and take part in pet therapy, psychomotor stimulation and creative workshops. the activities were changed every day and were adapted according to the degree of dementia. statistics baseline demographic and clinical characteristics between the three groups were compared with a fisher test. post-intervention differences in the outcome measures between the three groups were evaluated with a three-way repeated-measures analysis of variance. the analysis of variance included ‘group’ (experimental vs. placebo vs. control) and ‘stage of dementia’ (mild vs. moderate) as between-subject factors and ‘time’ (pre vs. post) as the within-subject factor. we performed post hoc paired comparisons using a fisher test, and bonferroni correction for multiple comparisons was also applied. statistical significance refers to a p value of < . . results analysis of variance did not show any significant interaction between the stage of dementia (mild vs. moderate), time (pre vs. post), and group (experimental, placebo, and control). so, we reported the results without considering the stage of dementia. the results revealed significant differences among the three groups at the post-treatment evaluations and between the experimental group’s baseline evaluation and its post-treatment evaluation ( table ). a significant interaction between ‘time’ and ‘group’ factors in cdr score analyses [f( , ) = . ; p < . , partial η = . ] showed that after weeks, only the patients in the experimental group exhibited an improvement in terms of a decrease in dementia severity: the mean score on the cdr scale decreased significantly (p < . ), while that of the other two groups remained stable ( fig. ). http://dx.doi.org/ . % f dement geriatr cogn disord extra ; : – doi: . / e x t r a mapelli et al.: cognitive stimulation in patients with dementia: randomized controlled trial www.karger.com/dee © s. karger ag, basel after the treatment, the experimental group had significantly better performances on the mmse [f( , ) = . ; p < . , partial η = . ] ( fig. ) and in the following enb subtests: immediate recall prose memory [f( , ) = . ; p < . , partial η = . ], delayed recall prose memory [f( , ) = . ; p < . , partial η = . ], clock drawing test [f( , ) = . ; p < . , partial η = . ] and abstraction [f( , ) = . ; p < . , partial η = . ], and enb total score [f( , ) = . ; p < . , partial η = . ] ( fig. ). the other two groups did not show any significant changes. moreover, after weeks of treatment, the experimental group displayed a significant decrease of behavioral symptoms, while the placebo and the control groups did not show significant changes [f( , ) = . ; p < . , partial η = . ] ( fig. ). discussion the aim of this study was to explore the efficacy of cognitive stimulation treatment in patients with mild and moderate dementia. the findings of this study show that sessions ( weeks) of cognitive stimulation treatment resulted in a significant improvement of cognitive and behavioral symptoms in patients with mild and moderate dementia. after weeks of cognitive stimulation treatment, the patients showed a significant decrease in . . . . . . . . . pre-treatment post-treatment . c d r s co re placebo experimental control * fig. . mean cdr scores before and after the treatments for the three groups. * = significant score decrease only in the experimental group. pre-treatment post-treatment m m se s co re placebo experimental control * fig. . mean mmse scores before and after the treatments for the three groups. * = significant dif- ference between pre- and post- treatment scores only in the ex- perimental group. http://dx.doi.org/ . % f dement geriatr cogn disord extra ; : – doi: . / e x t r a mapelli et al.: cognitive stimulation in patients with dementia: randomized controlled trial www.karger.com/dee © s. karger ag, basel dementia severity, a better performance in memory, abstraction, planning, and visuospatial ability, and a significant decrease in behavioral symptoms. the findings of this study provide additional evidence for the effectiveness of cognitive stimulation treatment, recently well documented [ , , ] . furthermore, these results highlight the specificity of the cognitive stimulation treatment efficacy because pwds treated with cognitive stimulation were compared with placebo and control conditions. in the placebo group, patients with mild and moderate dementia were treated with an occupational therapy program and patients in the control group followed the usual activities of their nursing home. the presence of a significant improvement only for the experimental group helps the data interpretation in terms of intervention specificity because when the experimental and control groups were exposed to similar social attention, the positive results of the studies were less frequent, and intervention specificity became blurred [ ] . in this study, the presence of a placebo group that did not show any significant improvement afterwards is strong evidence of the specificity of the cognitive stimulation treatment efficacy. the positive results of this study also highlight the beneficial effects of cognitive stimu- lation treatment on behavioral symptoms, thereby supporting the findings that showed a correlation between cognitive impairment and behavioral symptoms in dementia [ – ] and supported the hypothesis that argues for a potential cognitive basis of behavioral symptoms. pre-treatment post-treatment en b s co re placebo experimental control * fig. . mean enb total scores before and after the treatments for the three groups. * = signifi- cant difference between pre- and post-treatment scores only in the experimental group. pre-treatment post-treatment be ha ve -a d s ym p to m s co re placebo experimental control * fig. . mean behave-ad symptom scores before and after the treat- ments for the three groups. * = significant difference between pre- and post-treatment scores only in the experimental group. http://dx.doi.org/ . % f dement geriatr cogn disord extra ; : – doi: . / e x t r a mapelli et al.: cognitive stimulation in patients with dementia: randomized controlled trial www.karger.com/dee © s. karger ag, basel references   woods b, aguirre e, spector ae, orrell m: cognitive stimulation to improve cognitive functioning in people with dementia (review). cochrane database syst rev ; :cd .   aguirre e, woods rt, spector a, orrel m: cognitive stimulation for dementia: a systematic review of the evidence of effectiveness from randomized controlled trials. ageing res rev ; : – .   the british psychological society and the royal college of 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study group: behavioural symptoms in patients with alzheimer’s disease and their association with cognitive impairment. bmc neurol ; – . burns a, jacoby r, levy r: psychiatric phenomena in alzheimer’s disease. . disorders of behaviour. br j psychiatry ; : – . kumar a, koss e, metzler d, moore a, friedland rp: behavioural symptomatology in dementia of the alzheimer type. alzheimer dis assoc disord ; : – . http://dx.doi.org/ . % f 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : 	citref_ : multifunctional agriculture: social and ecological impacts on the organic farms in bulgaria procedia economics and finance ( ) – - © the authors. published by elsevier b.v. open access under cc by-nc-nd license. selection and peer-review under responsibility of kavala institute of technology, department of accountancy, greece doi: . /s - ( ) -x sciencedirect the economies of balkan and eastern europe countries in the changed world (ebeec ) multifunctional agriculture: social and ecological impacts on the organic farms in bulgaria stela todorova * jordanka ikova agriculture remains one of the dominant activities in rural areas all over the european union, not only in respect of utilization of land but also for its impact on landscapes. agriculture operates within complex systems and is multifunctional in its nature. the concept of multifunctional agriculture emerged in the last decade of the twentieth century in developed countries where the economic importance of agriculture was negligible, and the community was increasingly concerned with the quality of consumed food and the surrounding environment. within multifunctional agriculture, the different functions can be categorized into five colour categories. firstly, the white functions represent a contribution to food security and food safety. secondly, green functions represent a contribution to nature, the environment and landscape. water management by farmers and the harnessing of energy on farms are categorized as blue and red functions, respectively. the yellow functions, which have a more social focus. the final category is the social farming belongs to the group of yellow functions. it is one of the fields of multifunctional agriculture. multifunctional agriculture is a relatively new concept in the cee countries, especially in bulgaria. empirical findings show that the notion of multifuncionality is rarely used in bulgaria. the government of the country does not implement the concept of multifuncionality in the national plan for rural development but use relative concepts such as “economic diversification”, “rural development” or “alternative activities”. the purpose of this paper is to analyze and assess the status of multifunctional agriculture and its yellow function in bulgaria using two cases of studies and on the basis of farmers’ attitude towards the development of such activities as well as proposals or ways to establish a nationalcompetence center. © the authors. published by elsevier b.v. selection and peer-review under responsibility of kavala institute of technology, department of accountancy, greece. multifunctional agriculture; organic farms; social farming; farmers, network; nationalcompetence center. assoc. prof. dr ., uni versity of agr i cul ture, plovdi v, bul gar ia ch. assistant, universi ty of agr i cul ture, plovdiv, bul gari a keywords: abstr act available online at www.sciencedirect.com © the authors. published by elsevier b.v. open access under cc by-nc-nd license. selection and peer-review under responsibility of kavala institute of technology, department of accountancy, greece http://crossmark.crossref.org/dialog/?doi= . /s - ( ) -x&domain=pdf http://creativecommons.org/licenses/by-nc-nd/ . / http://creativecommons.org/licenses/by-nc-nd/ . / stela todorova and jordanka ikova / procedia economics and finance ( ) – agriculture in europe is going through a process of change at the economic, social, political, environmental and cultural levels. agriculture is forced to realign and meet the rapidly changing needs and expectations of european society (marsden et al. ;van der ploeg et al. ;van der ploeg ). burton and wilson ( ) capture this process with the productivist (postproductivistmultifunctionality model (the p/pp/mf-model). they show how modern agricultural regimes have moved from “productivism” to “postproductivism” and recently from “productivism” to “multifunctional agricultural regimes”. the concept of multifunctional agriculture within a process of integrated rural development (marsden ) may help to provide a solution for a size able group of farmers. this process may occur along the tracks of “broadening”, “deepening” or “re-grounding”. the concept of “broadening describes the development of new non agricultural activities. such activities widen the income flows of the farm enterprise. agri-tourism and nature and landscape management are the most common strategies. social farming is one type of broadening, that includes: - health and healing services; - education and therapy; - rehabilitation and social fields. social farming contributes to the well-being and social inclusion of the disabled people through the production of agricultural products and the fostering of solidarity and mutual assistance. engaging in these activities, people in trouble re-establish contact with both the world of work and the natural environment, which helps improve their health, facilitates learning, boosts self-esteem and mediates participation in the life of society. the umbrella term for these activities is "social farming". organic farming offers numerous possibilities for people to participate in the daily life of farms, for example through gardening or animal husbandry. the aim of social farming is to provide a better, more inclusive qualityof life. case studies emphasize detailed contextual analysis of a limited number of events or conditions and their relationships. we use this qualitative research method to examine contemporary real-life situations and provide the basis for the application of ideas. researcher robert k. yin defines the case study research method as an empirical inquiry that investigates a contemporary phenomenon within its real-life context; when the boundaries between phenomenon and context are not clearlyevident; and which multiple sources of evidence are used (yin, , p. ). modern organic farming represents a merging of a number of different streams of thinking boeringa, . in the austrian philosopher dr. rudolf steiner presented an alternative vision of agriculture arising from his spiritual science of anthroposophy (steiner, ). this formed the basis of the development of bio-dynamic agriculture which is now practised in many countries around the world. after the ideas of steiner many others have contributed to develop the concept of organic farming. the definition of organic farming incorporates the concept of sustainability. the term “sustainability” is used in a wider sense to underline not only the conservation of non renewable resources (soil, energy, minerals) but also the issue of social sustainability(radev et al., ). considerable growth occurred in organic farming between – in bulgaria. the certified land doubled between and . during this time, the number of operators (producers, processors, exporters, importers) increased substantially. the highest growth was seen for cultivated oilseeds, which increased fourfold. the area for medicinal and aromatic plants and nuts increased by more than percent, and the cereal and vegetable areas doubled. - : the first organic pilot farm ( hectares) was established on the farm at the agrarian university of plovdiv. - – : first intensive activities in the development of organic farming in bulgaria, such as training for farmers, publication of literature, and the preparation of the national legislation. the project “development of organic farming in the central balkan region” was financed by the swiss agencyfor development and cooperation (sdc) and implemented by the research institute of organic agriculture (fibl) and bioselena. . i nt roduction . organic farming as a base for development of social farming activities in b ulgar ia stela todorova and jordanka ikova / procedia economics and finance ( ) – - – : first steps in organic farming in bulgaria took place. the establishment of a national organic legislation (ordinance and ordinance ), the first national organic farming festival, the first farm certification; in , bulgaria participated for the first time at the biofach organic trade fair. - – : organic products became available in bulgarian shops. in , organic foods appeared for the first time in the supermarkets of sofia; in , organic foods became available for the first time in shops outside sofia; in , the organic boom began with more than shops selling organic products; the first tv advertisement for organic food also appeared during this time. - – : economic crisis and consolidation of the sector: organic farmers began receiving payments from the government; the association of organic farmers was established; the association of traders of organic food was set up; organic agriculture in bulgaria began developing into a real economic sector. table : development of the number of control bodies and operators, organic agricultural land & wild collection area, and beehives in bulgaria - control bodies certified operators certified organic land (hectares) areas for collection of wild plants (hectares) - - - certified animals - - - certified beehives - - - sources: data for - : bioselena. data for - : ministryof agriculture and food of bulgaria fig. .development of organic agricultural land in bulgaria - . at the end of , hectares were farmed organically, constituting . percent of the total usable farmland in bulgaria. in addition, there are large areas certified for the collection of wild fruit, herbs and mushrooms. organic animal breeding was still underdeveloped in , with only a small number of certified farms and animals. organic agriculture had beehives under organic management at the end of . organic farming and integrated farming represent real opportunities on several levels, contributing to rural economies. the environmental advantages of these farming systems can bring significant benefits for the economy as well as to help for social inclusion of disabled or mentally handicapped people, long-term unemployed persons, drug addicts or socially disadvantaged people, children and juveniles with behavioral and learning difficulties. in this way there are opportunities to establish farms which integrated old people, schoolchildren or nursery school children. stela todorova and jordanka ikova / procedia economics and finance ( ) – social farming (also known as ‘green care’/‘care farming’) is based on the recognition that working with animals, plants, soil and being in contact with nature has special value for peoples’ wellbeing. across europe, it is being utilised as a service option for people with mental health difficulties, people with disabilities (intellectual, physical and sensory), drug/alcohol rehabilitation services, prisoner rehabilitation services, services for older people, therapeutic activities for children etc(aideen mcgloin et al., ). social farming is both a new and a traditional concept. it originates from the traditional rural self-help systems that were well-established in rural areas before modernization of agriculture and the rise of the public welfare system. back in the s of the twentieth century in europe a discussion began on the future of agriculture and building a community between producers and consumers. based on the new understanding of community, the creating of a network of farms leads to: -cooperation between farms - that allows the allocation of the production and then the production is shared between them; ensuring the purchase of products by consumers. community between producers and consumers is based on trust, support andequality.further on quite naturally onemore thing is added: - including socio-therapy – the community of manufacturers accept people with any disabilities or mental disorders, who worked according to their abilities. residents of the farm are usually: - farming families who permanently live there.each community involves between and disabled people (it depends on the farm capacity), and each of them has certain obligations. meanwhile social workers assist people in their daily lives. the social workers usually do not live on the farm. they travel from the nearest village, but there are exceptions. what does social farming do? first, it shows that a person with health problems with relationship to the land could improve the conditions of his live, i.e. there is a direct healing effect. second – it illustrates that being in a community people could contribute to that effect with their daily presence and labor. third – it builds up a strong and cohesive community which can be self-supporting, changing the fate of everyone, regardless of their health problems. speaking of such a community, we have in mind the consumers, as well. how are disabled people involved in such a farm: some of them, in case the disability permits, do field work or take care of animals. others engage themselves in house work - cleaning, cooking, growing flowers or preparing of winter supplies (jam, pickles, etc.) for the consumers of community. nobody is forced to do something he dislikes, or something out of his capabilities. the help of social workers is of great importance, because they know very well the difficulties and strengths of each person involved. the identification of social farming as a concept moves through a slowprocess of collective knowledge. this should involve different actorsplaying an active role in the field as project holders; health/socialcare operators, farmers, institutional staff and politicians. according to the local/country situation the process could immediately generate a consensus at national as well as local level of graduallyenlarge the range of people involved. the process of organisation of local networks should be facilitated. a network isa place where people can convene, exchange experiences and shareinformation and knowledge, as well as attract new actors.there are a lot of differences between the countries depending on their history, approaches and focuses. there are three approaches: - an institutional approach, with the prevalence of public/health institutions (germany, france, ireland and slovenia); - a private approach based on therapeutic farms (netherlands, flanders in belgium); - a mixed approach based on social cooperatives and private farms (italy). their positioning is also different: in italy and france, social farming is closer to the social and healthcare sector; in the netherlands it is closer to the health system; in flanders it is nearer to agriculture, and in germany, great britain, ireland and slovenia it lies somewhere between the social/health and health sectors. financing patterns differ from country to country: - public projects and charitybased on voluntaryassociations (italyand france) and social cooperatives (italy); . the concept of social farming - stela todorova and jordanka ikova / procedia economics and finance ( ) – - public funds (health/care/education sectors) directed to public bodies (germany, ireland and slovenia), farms (netherlands) and social cooperatives (italy); - rural development policies to compensate farms for social farming activities (flanders) or to support social farm start-ups under axis in the - programming period (italy); - direct access to food markets for ethical products and direct selling (france and italy). there is no single definition of social farming. social farming includes a broad range of different practices, so it is not easy to be defined. however, two common elements are always present: a) it is practised on farms; b) it is targeted at disabled people. generally speaking, three areas of social farming can be distinguished: a) rehabilitation and therapeutic activities* b) work inclusion and social integration† c) educationactivities‡. there is general consensus that activities under “a” and “b” are part of social farming, but the same is not true of the education activities under “c”. some researchers see social farming solely in terms of rehabilitation of people in difficulty, while others consider it an element of a new well-being and regard social farming as a service provider in rural areas. the integration of handicapped people in agriculture is a combination of social work and farming which aims to make the multifunctional potential of agriculture demanded by society and politics. both agriculture and social workcanprofit fromcooperation (vanelsen, ). we describe a study of the potential of two farms for integration of physically and mentally disabled people as well as students and school children. wild farmis situated in the village of gorno pole, madzarovo municipality inthe eastern rhodope mountains.wild farm has be the first and the only organic certified farm by now for breeding rare breeds of cattle – bulgarian gray cattle and rhodopean shorthorn cattle. this farm is the largest in bulgaria for breeding the rhodope shorthorn cattle. the local breeds for meat are mostly suited to organic breeding.the rhodope mountains is the home of the first farm certified for organic meat. cattle, beehives, karakachan sheep, karakachan dogs as well as horses for riding have been bred in wild farm so far. there is a guest house with six guest rooms as well. the farm has an organic farming certification for veal, honey and vegetables produced from , ha own garden as well as pastures where the animals could graze. the farm produces organic beef meat, domestic fruits and vegetables, butter, milk, cheese, lamb, chickens, different local delicacies. the bulgarian meat market is quite specific. it is almost impossible to find authentic veal on it. there is plenty of beef for sale but veal is almost unavailable. dairy cattle breedingwasthe legacy of communism by . it allowed the country to export celebrated yogurt and white feta cheese that used to bring good revenues. meat cattle breeding was neglected. table : main activities, incomes and costs of the “wild farm” * therapy/rehabilitation includes therapeutic activities for people with physical disabilities or psychiatric problems conducted on a farm as horticultural therapy, pet therapy, horse therapy, donkey therapy and so on. other rehabilitation activities – such as housing and social integration for the elderly, drug/alcohol addicts, victims of trauma (children, abused individuals etc.), ex-prisoners and people recovering from illness – are also included if they take place on a farm. † work inclusion comprises activities for work placement and training, especially: inclusion in the job market of physically and mentally disabled people who participate in agricultural cycles according to their abilities; farming activities in prisons as an opportunity for prisoners to work and train in new job skills; new farms managed by disabled people (e.g. social cooperatives). ‡ education and recreation comprises activities for students with learning difficulties or social adaptation problems; learning activities (educational farms), hands-on learning for students about rural livelihoods and agricultural cycles. . . case one: wild f arm m ain activitiesnumber i ncomes per costs per payments by year in euryear measur e * stela todorova and jordanka ikova / procedia economics and finance ( ) – cattle breeding - cows - calves beehives with bees karakachansheeps karakachan dogs - horses for riding - vegetable gardening , ha organic pasture ha - ecotourism quest rooms social activities - - *measure relates to agro-environment payments. sub-measures: organic pasture and traditional livestock breeding scheme. source: interview with farmer and own calculations wild farm sells about calves per year with average weight of kg. the price per kg live weight is , bgn or , eur. the main incomes come from measure and sub-measures for organic pastures and traditional livestock breeding scheme ( rare breeds). some of the incomes farmers invest in purchase of land. for the first time they received payments under this measure in for a two year period ( - ). blagovesta(betty)and nikolayvassilevs have been owners of the only farm certified for organic meat in bulgaria so far. “we can rightfully be recognized as guardians of this local breed. it is threatened with extinction resulting from wrongful policies of the past. by laying the emphasis on the bulgarian black pied cattle for dairy production in the first place, we have neglected some traditional breeds and they have now become scarce. the new black pied cattle live no longer than to years. to obtain a litre of milk around lof blood should be pumped through the heart of the cattle. you can imagine what that means. that is why they haveso short lives. by contrast, the shorthorn cattle we rear live up to years, believe it or not!”,bettyspecifies. local traditional breeds are the fittest for economic organic farming. for feeding animals they use not concentrated fodder. these breeds need no antibiotics as they boast strong immunity. in wild farm cattle are bred by grazing freely throughoutthe year– just like in ancient times. these cattle are very clever. they gather their offspring in small groups and three or four cows take care of them throughout the day – just like in nursery school. in this way they take turns. in case of wolf attacks, cows and bulls form a line of resistance and make sure they protectthecalves. for protection of cattle from wolf attacks, the vassilevs rear a dozen dogs from the local breed of karakachan. for centuries karakachan dogs have tackled wolf attacks in the best possible way. it is interesting to find out why wild farm is the only farm in bulgaria certified for production of organic meat. the problems are many and easily slip into a vicious circle. in the first place, as a result of the controversial agrarian reform in post-communist bulgaria, most cattle farmers do not own land and they could not create bio certified pastures. to certifya pasture they should have either property or land leased by them for at least five years. now the government has been trying to encourage local authority to lease out mostly uncultivated lands to farmers. another problem is the lack of slaughterhouses for certified organic meat. “so far there have been no certified farms for organic meat, so slaughterhouses have not been keen to invest in certificates as well as building special facilities for organic raw materials”, nikolay vasilev, blagovesta’s husband explains. thirdly, there is no consistent central government policy to encourage organic animal farming. “cattle breeders get nothing from the european financing earmarked for agriculture”, betty comments. this might be taken into consideration in the next eu program, notably - . in the meantime, wild farm has option to export its animals abroad, in countries that have slaughterhouses for organic meat. the best market is italy where fresh organic meat is mainly delivered to kindergartens and schools. the same is true for albania. the basic activities, which find application in the farm, include animal interaction (mainly with horses, caws and sheep) for children, youngsters and adults with different health problems, as well as participation in agricultural in eur t otal - stela todorova and jordanka ikova / procedia economics and finance ( ) – activities of adults, having problems with social behavior and adaptation. demonstration st : breedinganimals (feeding, cleaning, milking, caring lambs); nddemonstration: vegetables gardening (sowing, cultivating, harvesting). the farm is visited by students for their practical training. the owners of the farm contribute to the professional growth of students. wild farm offers opportunities for people to participate in the varied rhythms of the day and the year, either in growing vegetables or keeping animals. prevention of illness, social inclusion, better qualityof life are features of social agriculture. the demonstrational organic farm is situated on area of ha in the suburbs of plovdiv and it is managed by the agroecological center – a part of the structure of the au-plovdiv. this is the first functional agricultural – stock- breeding farm in the country, established in by the methods of organic agriculture. on , ha cultivated land were organized organic vegetable-growing with separate fields for crop-rotation; forage production (wheat, corn, legume mixtures, lucerne, growing different fruit varieties (peaches, prunes, cherries, etc.) and vines. a necessary organic balance has been achieved which allows to use only organic methods for plant protection against pests. the demonstrational farm was certified for organic production in from “balkan biocert” ltd, in accordance with eu requirements and regulation of the ministry of agriculture and food.the farm is the main basis for practical training of farmers and specialists – consultants, local administrators from municipalities and state authorities, students studying « agroecology» and « plant protection » at au – plovdiv and developing graduational works and dissertations. the farm is in a comparatively good condition, but it needs additional support, some investments and certain independency. because of the small size the farm cannot provide its maintenance only by selling organic vegetables and in the same time to function as a training base. the farm is envisaged for demonstrational activities for children. an initial idea for organizing trainings, visits and practical experiences for children, farmers and students was very ambitious and it required different type approaches, different pedagogical skills and different educational materials. together with the partners from the metropolitan center for work with children they decided to direct their efforts only to one target group – the children. the reasons for this decision were: first - the experience of the partners from the metropolitan center for work with children; second - an innovation part – this would be the first bulgarian farm to offer trainings for children; active vegetation in the farm continues months – from st of april to st of october.there are opportunities to implement demonstrations on the field – starting with trimming fruit-trees, soil preparation, sowing vegetables, harvesting grain crops, hay, vegetables, fruits and grapes. duringthisperiodallchildrengroupsvisitfarmfields, someofthemparticipatewithsuitableequipment inmainagriculturalactivities – planting, hoeingandcropsharvesting. some groups will also have an opportunity to plant crops in their next visit to analyze how their crops are growing. field work and visits are supplement with suitable materials – colored books with pictures of different vegetables, interesting facts about vegetables, etc. in the period november – march, when there is no vegetation, demonstrational activities are directed to animals breeding and processing products in the farm. demonstrations depend on the season. demonstrational activities outdoors: - stdemonstration: grains (wheat, rye, barley) – sowing, cultivating, fertilizing, harvesting, crop storing - nddemonstration: vegetables (sowing, cultivating, harvesting) - rddemonstration: fruits – fruit-treesandvines (planting, cultivating, fertilizing, crops harvesting) - thdemonstration: breedinganimals (feeding, cleaning,milking, caring lambs) food processing in the farm is the most attractive part of the training. they have opportunities to see cheese, bread production and milking. for demonstrational activities a training hall with special place for food processing is established. this place is equipped for processing the following products: st demonstration: graincrops (wheat, rye) – milling flour; kneading and baking bread in the wood oven; nddemonstration: fruits – producing jams and nectars; rddemonstration: milk– pasteurization;production of cheese, cream and butter; . . case two: demonstration on t he organic farm at the a grarian university in plovdiv (a u). stela todorova and jordanka ikova / procedia economics and finance ( ) – demonstrations of different food processing take turns so the children have opportunities to watch the whole process as well as to process some food themselves. for example: to produce butter from cream, to knead small bread, to produce jam, etc. all these demonstrations and practical trainings are new in bulgaria. for this purpose they rely their norwegian partner who helps them with training animators, a farm’s manager and training programs and materials. conclusion: opportunities for farm work with disabled people and children (social farm activities) are available. advantages: the farms provide plenty of practical tasks; by including disabled people, students and children farm are less dependent on production; work on the farm, including disabled people and children, promotes development of social farming; children are the future consumers of organic products and investment in their training is more perspective. disadvantages: financial issues; shortage of good experience; shortage of professional staff; capabilities of disabled people. the investigation of these two cases show that there is great potential for inclusion of children and disabled people in the work on farms and the first steps have been achieved. in fact, this potential in bulgaria is limited by multiple factors; the most important factor is that the concept of social farming is not well-known in the country and there is no common, purposeful and consistent policy to popularize and develop this type of activities. the examples existing in the practice are realized as a private initiative on a free principle and with financial support by european projects without any assistance and coordination from the government. the presented information warrants a general conclusion that the development of social farming in bulgaria is in an initial phase. the main problems before its development have their roots in the lack of proper informal and formal institutional environment. on one hand the society is not sufficiently acquainted with the ideas and practices of social farming, on the other hand – the state, in all its governing organs, does not create any appropriate conditions for stimulating and popularizing of these types of activities. the stage of organic farming in bulgaria offers numerous possibilities for people to participate in the daily routine on a farm.a potential for development of social farming in the country exists due to the suitable natural- climatic conditions and the existing traditions in the agricultural output. social farming helps people with specific needs solve their problems and start developing this kind of activities.the realization of this potential requires coordinated and purposeful work from the representatives of the state authority, scientists and specialists, who have to popularize the idea, reveal its perspectives and turn the public interest to the desired direction. we can conclude that there is a base for development of social farming in bulgaria because a network between organic farmers exists. many associations and organizations for organic farming are established, which provide a base for social farm activities. in our network we include the agricultural, social and educational sectors. finally, our idea is to establish a national competence centre for training in multifunctional agriculture. through therapy, work and social inclusion or education, social farming provides high-value public services and contributes to sustainable development. moreover, social farming, on the base of diversification of activities it generates can have a sizeable impact on local development. however, there is no regulatory framework for it, either at eu level or national. only certain countries (france, italy and the netherlands) have put sector regulations in place, both at national or regional level. the development of social farming across europe requires a conductive environment and fruitful cooperation between different policy areas and administrations (health/social/farming/labor) at european, national, regional and local levels. . conclusion stela todorova and jordanka ikova / procedia economics and finance ( ) – boeringa, r., .alternative methods of agriculture.agriculture and environment special issue , elsevier,amsterdam. burton, r. and g. wilson, . injecting social psychology theory into conceptualization of agricultural agency: towards a post-productivist farmer self-identity? journal of rural studies, ( ), pp. - marsden, t. . the conditionof rural sustainability?assen, royal van corcum, netherlands. mcgloin, a. et al. . social farming in ireland-policy networks as a tool for multi-disciplinary collaboration, university college dublin, www.conference.campusengage.ie/papers/.../ radev,t., p. borisov and d. nikolov, . policy intervention effects on landscape management in bulgaria. nd seminar of the eaae (europeanassociation of agricultural economists), “is transition in european agriculture really over?”, skopje. steiner, r., .agriculture: a course of eight lectures, rudolf steiner press, biodynamic agricultural association, london. van der ploeg j. d. et al, . the virtual farmers.assen, royal van corcum, netherlands. van der ploeg j. d. et al, . rural development: from practices and policies towards theory. sociologiaruralis, ( ), pp. - . vanelsen,t., . social farming –structures of social integration in germany, fibl e.v., ./ ., brussels. yin, r. k., . case study research: design and methods. newbury park, ca: sage. references stela todorova and jordanka ikova / procedia economics and finance ( ) – the copyright line is locked in the procedia templates. the author may not edit the same and making it editable only psms. if there are any copyright changes required, you are requested to contact journal manager through guest editors. for editable the below mentioned steps must be followed: click on copyright statement clickon in tab remove the checks from and under and then press we have added macros in the word templates for the below mentioned features. and since macros are not supported in doc and docx format we created the templates of all procedia titles in .docm format. 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a s save as type pdf (* .pdf) save . reference styles used in procedia master templates: tit le reference style        | comfort line   	 home 	 comfort theory topics 	philosophical perspectives 	comfort interventions and care plans 	comfort checklist 	measuring comfort 	subsequent & institutional outcomes 	nursing education 	end of life & palliative care 	frequently asked questions 	 resources 	unpublished but important work 	articles available here 	references 	videos 	 about me 	 more there’s nothing here... we can’t find the page you’re looking for. check the url, or head back home. go home thecomfortline.com © -  by kathy kolcaba webmaster paul cantlay 	   dissemination of the fosfomycin resistance gene fosa with ctx-m �-lactamase genes and rmtb carried on incfii plasmids among escherichia coli isolates from pets in china jianxia hou, xianhui huang, yuting deng, liangying he, tong yang, zhenling zeng, zhangliu chen, and jian-hua liu college of veterinary medicine, national reference laboratory of veterinary drug residues, south china agricultural university, guangzhou, china the presence and characterization of plasmid-mediated fosfomycin resistance determinants among escherichia coli isolates col- lected from pets in china between and were investigated. twenty-nine isolates ( . %) were positive for fosa , and all of them were ctx-m producers. the fosa genes were flanked by is and were localized on f :a�:b� plasmids or on very sim- ilar f :a�:b� plasmids carrying both blactx-m- and rmtb. these findings indicate that the fosa gene may be coselected by antimicrobials other than fosfomycin. fosfomycin is a traditional antimicrobial agent with broad-spectrum bactericidal reactivity and good pharmacological properties. it used to be an alternative treatment for uncompli- cated lower urinary tract infections which were caused by a wide variety of bacteria, including escherichia coli ( , , ). the recent growing prevalence of extended-spectrum �-lacta- mase (esbl)-producing enterobacteriaceae and fluoroquinolone- resistant e. coli has rekindled interest in fosfomycin as a therapeu- tic agent in many countries ( , , ). despite its worldwide use in clinical practice for nearly decades, fosfomycin remains effective against common uropathogens without giving rise to clinically significant resistance ( , , , , , , ). the main type of resistance to fosfomycin appears to be chromosome mediated rather than plasmid mediated ( , , , ). however, two novel plasmid-mediated fosfomycin-modifying enzymes, fosa and fosc , were recently identified in ctx-m-producing e. coli in japan ( ). transferable plasmids carrying fosa or fosc might accelerate the dissemination of fosfomycin resistance around the world. fosfomycin has been approved for clinical application for many years in china. however, information on the occurrence and characteristics of fosfomycin-resistant e. coli in china is scarce. in the present study, we intended to examine the preva- lence of fosfomycin resistance and plasmid-borne fosfomycin re- sistance genes among e. coli isolates from companion animals. a total of e. coli isolates were recovered from healthy ( iso- lates) and diseased ( isolates) pets ( from dogs and from cats) at pet hospitals in guangdong province, china, between and . the mics of fosfomycin were determined by the agar dilution method on mueller-hinton agar containing �g/ml glucose -phosphate, according to guideline m -s of the clinical and laboratory standards institute (clsi) ( ). most of the strains ( . %) studied were susceptible to fosfomycin, whereas iso- lates ( . %) showed resistance to fosfomycin (mic � �g/ ml). the isolates were screened for the plasmid-borne fosfomy- cin resistance genes fosa , fosc , and fosa by pcr amplification and sequencing with the primers and pcr conditions listed in table . twenty-nine isolates ( . %) were positive for fosa (ta- ble ). no fosc or fosa gene was detected among these isolates. phylogenetic grouping of fosa producers as previously de- scribed ( ) revealed that these e. coli isolates belonged to three phylogenetic groups (a, b , and d) (table ). pulsed-field gel electrophoresis (pfge) ( ) was successfully performed on fosa producers, and different xbai pfge patterns were ob- served. this suggested that the dissemination of fosa was not due to the clonal dissemination of fosa -positive isolates. however, clonal expansion was observed between dogs and cats and be- tween pet hospitals (table ). moreover, three clonally related isolates (hn , hn a , and hn ) which were grouped into phylogenetic group b were recovered from different animals and hospitals during and (table ). multilocus sequence typing (mlst) analysis revealed that they all belonged to the same sequence type (clonal complex st ) (data not shown). received june returned for modification september accepted december published ahead of print january address correspondence to jian-hua liu, jhliu@scau.edu.cn. j.h. and x.h. contributed equally to this article. copyright © , american society for microbiology. all rights reserved. doi: . /aac. - table primers and pcr conditions used primera sequence ( =– =) size (bp) annealing temp (°c) fosa -f gcgtcaagcctggcattt . fosa -r gccgtcagggtcgagaaa fosc -f tggaggctacttggatttg . fosc -r aggctaccgctatggattt is -f gcacgcatcacctcaatacc unknown . fosa -r tcatccagcgacaagcaca fosa -f ggggctgaggtatggaaaga unknown . is -r aggagatgctggctgaacg fosa-f atctgtgggtctgcctgtcgt . fosa-r atgcccgcatagggcttct a primers were designed in this study. - / /$ . antimicrobial agents and chemotherapy p. – aac.asm.org o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a a c.a sm .o rg / d o w n lo a d e d fro m http://dx.doi.org/ . /aac. - http://aac.asm.org http://aac.asm.org/ mics of cefotaxime, amikacin, tetracycline, chloramphenicol, and ciprofloxacin were determined by the agar dilution method, and the results were interpreted according to the clsi breakpoints ( ). it revealed that all fosa -positive isolates were resistant or intermediate to cefotaxime, while and isolates showed resis- tance to amikacin and ciprofloxacin, respectively. the occurrence of rmtb, arma, and blactx-m among these fosa -positive isolates was determined by pcr amplification and sequencing as previ- ously described ( , ). all of the fosa -positive isolates were ctx-m producers, and of them produced ctx-m- (table table characterization of fosa -carrying escherichia coli isolates and plasmids isolatea date (yr.mo) of isolation pet hospitalj originb resistance phenotypec resistance gene(s)d phylogenetic group pfge typee plasmid distance (bp) downstream of fosa f fab formulag ecori rflph addiction system(s) hn e . ph dog pharynx ctx, ami, cip, chl, tet blactx-m- , rmtb a a f :a�:b� ia pemki, hok-sok, srnbc hn . ph cat feces* ctx, ami, cip, chl, tet blactx-m- , rmtb a b f :a�:b� ia pemki, hok-sok, srnbc hn f . ph cat feces ctx, ami, cip, chl, tet blactx-m- , rmtb b f :a�:b� ia pemki, hok-sok, srnbc hn a . ph dog feces ctx, ami, chl, tet blactx-m- , blactx-m- , rmtb b f :a�:b� ia pemki, hok-sok, srnbc hn b . ph dog feces ctx, ami, cip, chl, tet blactx-m- , rmtb d f :a�:b� ia pemki, hok-sok, srnbc hn d . ph cat feces ctx, ami, cip, chl, tet blactx-m- , rmtb a f :a�:b� ia pemki, hok-sok, srnbc, ccdab hn b . ph dog feces ctx, ami, cip, chl, tet blactx-m- , rmtb a nt f :a�:b� ia pemki, hok-sok, srnbc, ccdab hn e . ph dog pus ctx, ami, cip, chl, tet blactx-m- , rmtb a f :a�:b� ib pemki, hok-sok, srnbc hn a . ph dog feces* ctx, ami, cip, tet blactx-m- , rmtb a f :a�:b� ia pemki, hok-sok, srnbc hn . ph dog feces* ctx, ami, cip, chl, tet blactx-m- , rmtb d nt f :a�:b� ia pemki, hok-sok, srnbc hn . ph dog feces* ctx, ami, cip, tet blactx-m- , rmtb a f :a�:b� ia pemki, hok-sok, srnbc hn . ph dog feces ctx, ami, cip, tet blactx-m- , rmtb a f :a�:b� ic pemki, hok-sok, srnbc hn . ph dog feces ctx, ami, cip, tet blactx-m- , rmtb a , f :a�:b� vi pemki, srnbc hn e . ph dog feces ctx, ami, cip, chl, tet blactx-m- , rmtb b , f :a�:b� ivc pemki, hok-sok hn . ph cat feces* ctx, ami, cip, tet blactx-m- , rmtb b , f :a�:b� nd i pemki, hok-sok hn a . ph dog sneeze ctx, ami, cip, tet blactx-m- , rmtb b , f :a�:b� iva pemki, hok-sok hn . ph cat feces ctx, ami, cip, tet blactx-m- , rmtb b , f :a�:b� nd pemki, hok-sok hnc . ph dog feces ctx, ami, cip, tet blactx-m- , blactx-m- , arma d nt , f :a�:b� nd pemki hnc . ph cat feces ctx, ami, cip, tet blactx-m- , rmtb a unknown v pemki hn . ph cat feces ctx, ami, cip, chl, tet blactx-m- , rmtb d , unknown nd pemki, hok-sok hn . ph dog feces ctx, ami, cip, chl, tet blactx-m- , rmtb d , nd nd nd hn d . ph dog feces ctx, ami, cip, chl, tet blactx-m- , rmtb a f :a�:b� iia pemki, hok-sok hn e . ph dog feces ctx, ami, cip, chl, tet blactx-m- , rmtb a f :a�:b� ivb pemki, hok-sok hn c . ph dog feces ctx, ami, cip, tet blactx-m- , rmtb d f :a�:b� iib pemki, hok-sok hn a . ph dog feces ctx, ami, cip, chl, tet blactx-m- , arma d unknown iiia pemki hn . ph dog feces ctx, ami, cip, chl, tet blactx-m- , rmtb d nd nd nd hn b . ph dog feces ctx, cip, chl, tet blactx-m- a f :a�:b� iiib pemki, hok-sok hn e . ph cat feces* ctx, chl, tet blactx-m- d f :a�:b� ivb pemki, hok-sok hn f . ph dog feces ctx, cip, chl, tet blactx-m- a unknown nd none a isolates from which the fosa gene was transferred to the recipient by conjugation or transformation (isolates hn a , hn d , hn , and hn ) are underlined. b healthy pets are indicated by asterisks. c all isolates and all transconjugants and transformants were resistant to fosfomycin. resistance phenotypes transferred to the recipient by conjugation are underlined. ctx, cefotaxime; amk, amikacin; cip, ciprofloxacin; chl, chloramphenicol; tet, tetracycline. d genes that were transferred by conjugation or transformation, as determined by pcr, are underlined. e pfge types ( , , , etc.) were assigned by visual inspection of the macrorestriction profile. patterns that differed by fewer than six bands were considered to represent subtypes within the main group ( a, b, etc.). nt, nontypeable. f the size of the spacer region between the = end of fosa and is . g allele numbers were assigned by submitting the amplicon sequence to the multilocus sequence typing database (www.pubmlst.org/plasmid). h rflp patterns that differed by only a few bands ( to ) were assigned to the same rflp profile. i nd, not determined. j ph to ph , pet hospitals to , respectively. hou et al. aac.asm.org antimicrobial agents and chemotherapy o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a a c.a sm .o rg / d o w n lo a d e d fro m http://aac.asm.org http://aac.asm.org/ ). in addition, and of them carried rmtb and arma, respec- tively. details for all fosa -positive isolates are shown in table . specific primers were designed according to reported surround- ing structures to determine the genetic environment of the fosa gene (table ). the results showed that all fosa genes were flanked by is , which was similar to the genetic environment of the first-reported fosa gene ( ). all fosa genes were located bp downstream of is . however, the size of the spacer region between the = end of fosa and is varied ( , , , and bp) (table and fig. ). moreover, the , -bp region had % nucleotide identity with a part of the chromosome sequence of klebsiella pneumoniae strain and was % identical to the sequence downstream of fosa in e. coli - , an isolate from japan (fig. ) ( ). conjugation was carried out to determine the transferability of fosa genes with e. coli c (high level resistance to streptomy- cin) as the recipient ( ). transconjugants were selected on mac- conkey agar plates containing fosfomycin ( �g/ml) and strep- tomycin ( , �g/ml) for counterselection. when plasmid cotransfer occurred, a transformation experiment was carried out. transformants were selected in lb agar plates containing �g/ml fosfomycin by using e. coli dh � as the recipient. antimi- crobial susceptibility testing was conducted for transconjugants and transformants, and the transfer of the resistance gene was confirmed by pcr as described above. the fosa genes were suc- cessfully transferred to the recipients from donors by conjuga- tion or transformation (table ). the transconjugants and transformants all showed extraordinarily high-level resistance to fosfomycin (table ). in addition, blactx-m and rmtb genes were cotransferred to the recipients with fosa from and donors, respectively. plasmids were assigned to incompatibility groups by pcr-based replicon typing ( ). replicon sequence typing was used to characterize the incfii plasmids ( ). f :a�:b� and f :a�:b� were identified in and plasmids carrying fosa , respectively. f :a�:b� plasmids also contained blactx-m- and rmtb and had nearly identical sizes and ecori digestion profiles (table and fig. ). southern blot hybridization was performed on ecori digestion fragments of f :a�:b� plasmids with a digoxigenin-labeled probe specific for fosa . it showed that fosa was located on the same-size band (� kb, the largest digestion fragment) in isolates (fig. ), demonstrating the presence of an epidemic plasmid responsible for the dissemination of fosa . however, the predominance of the f :a�:b� plasmid type was unexpected, since the pets were epidemiologically unrelated and samples had been obtained in different periods at four different hospitals between and . to better understand the suc- cessful dissemination of these incfii plasmids carrying fosa , plasmid addiction systems were determined using primers de- scribed by mnif et al. ( ). pemki (n � ), hok-sok (n � ), and srnbc (n � ) were the most frequently represented systems, and almost all f :a�:b� plasmids carried these three addiction sys- tems (table ). the occurrence of fosfomycin resistance in e. coli from human and pet animal isolates is still rare in many countries (� %) ( , , , , , , , ). however, in this study, a higher prevalence of fosfomycin resistance mainly mediated by fosa was observed in e. coli isolates recovered from pets during and , al- though none of the pets had received fosfomycin treatment. the fig comparison of regions flanking fosa . (i)escherichia coli - from japan ( ). (ii) the size of the spacer region between the = end of fosa and is is , bp (genbank accession no. jf ). (iii) the size of the spacer region between the = end of fosa and is is bp (genbank accession no. jf ). (iv) the size of the spacer region between the = end of fosa and is is bp (genbank accession no. jf ). fig analysis of f :a�:b� plasmids carrying fosa . lanes to , hn , hn a , hn b , hn d , hn b , hn a , hn , hn , hn e , hn , hn e , and hn ; lane m, �hindiii and dl marker. (a) plasmid profiles of transconjugants and transformants carrying f :a�:b� plasmid. (b) ecori restriction digestion profiles of f :a�:b� plasmids. (c) southern blot hybridization of ecori-digested plasmids with a digoxigenin- labeled fosa -specific probe. fosa in escherichia coli isolates from pets april volume number aac.asm.org o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a a c.a sm .o rg / d o w n lo a d e d fro m http://aac.asm.org http://aac.asm.org/ association with other resistance determinants has likely favored the dissemination and maintenance of fosa , since the additional resistance genes, such as blactx-m and rmtb, allow coselection of fosa by cephalosporins and/or aminoglycosides (especially ami- kacin and gentamicin), which have been frequently used for pet therapy in china ( ). in conclusion, the dissemination of the fosa gene, which is closely associated with blactx-m and rmtb, is mainly driven by horizontal transfer of f :a�:b� and f :a�:b� plasmids rather than clonal expansion. since pets are able to acquire multidrug- resistant pathogens and transmit them to humans due to their close contact, the presence of these resistance bacteria and plas- mids in pets may become a public health concern. effective anti- microbial policies in veterinary hospitals should be developed in china. nucleotide sequence accession numbers. the sequences de- termined in this study have been deposited in genbank under the accession numbers jf , jf , and jf . acknowledgments we are grateful to jun-ichi wachino for providing the sequence flanking fosa for comparison. we thank minggui wang for helpful comments on the manuscript. this work was supported in part by grants and u from the national natural science foundation of china. references . carattoli a, et al. . identification of plasmids by pcr-based replicon typing. j. microbiol. methods : – . . chen l, et al. . emergence of rmtb methylase-producing escherichia coli and enterobacter cloacae isolates from pigs in china. j. antimicrob. chemother. : – . . chislett rj, white g, hills t, turner dp. . fosfomycin suscepti- bility among 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escherichia coli to fosfomycin. vet. microbiol. : – . . lei t, et al. . antimicrobial resistance in escherichia coli isolates from food animals, animal food products and companion animals in china. vet. microbiol. : – . . maraki s, et al. . susceptibility of urinary tract bacteria to fosfomy- cin. antimicrob. agents chemother. : – . . mnif b, et al. . molecular characterization of addiction systems of plasmids encoding extended-spectrum �-lactamases in escherichia coli. j. antimicrob. chemother. : – . . oteo j, et al. . ctx-m- -producing urinary escherichia coli o b- st -phylogroup b has acquired resistance to fosfomycin. j. antimi- crob. chemother. : – . . oteo j, pérez-vázquez m, campos j. . extended-spectrum �-lacta- mase producing escherichia coli: changing epidemiology and clinical im- pact. curr. opin. infect. dis. : – . . patel ss, balfour ja, bryson hm. . fosfomycin tromethamine. a review of its antibacterial activity, pharmacokinetic properties and thera- peutic efficacy as a single-dose oral treatment for acute uncomplicated lower urinary tract infections. drugs : – . . samonis g, et al. . antimicrobial susceptibility of gram-negative nonurinary bacteria to fosfomycin and other antimicrobials. future mi- crobiol. : – . . seoane a, sangari fj, lobo jm. . complete nucleotide sequence of the fosfomycin resistance transposon tn . int. j. antimicrob. agents : – . . sun y, et al. . high prevalence of blactx-m extended-spectrum �-lac- tamase genes in escherichia coli isolates from pets and emergence of ctx- m- in china. clin. microbiol. infect. : – . . takahata s, et al. . molecular mechanisms of fosfomycin resistance in clinical isolates of escherichia coli. int. j. antimicrob. agents. : – . . villa l, garcía-fernández a, fortini d, carattoli a. . replicon sequence typing of incf plasmids carrying virulence and resistance deter- minants. j. antimicrob. chemother. : – . . wachino j, yamane k, suzuki s, kimura k, arakawa y. . preva- lence of fosfomycin resistance among ctx-m-producing escherichia coli clinical isolates in japan and identification of novel plasmid-mediated fosfomycin-modifying enzymes. antimicrob. agents chemother. : – . . warren jw, et al. . guidelines for antimicrobial treatment of un- complicated acute bacterial cystitis and acute pyelonephritis in women. clin. infect. dis. : – . . xu h, miao v, kwong w, xia r, davies j. . identification of a novel fosfomycin resistance gene (fosa ) in enterobacter cloacae from the salmon river, canada. lett. appl. microbiol. : – . hou et al. aac.asm.org antimicrobial agents and chemotherapy o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a a c.a sm .o rg / d o w n lo a d e d fro m http://aac.asm.org http://aac.asm.org/ wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . 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http://europepmc.org/abstract/med/ dementia at the end of life and family partners: a symbolic interactionist perspective on communication behavioral sciences article dementia at the end of life and family partners: a symbolic interactionist perspective on communication christopher johnson ,*, jordan kelch and roxanna johnson department of sociology, university drive, texas state university, san marcos, tx - , usa; j_k @txstate.edu gerontologist and dementia specialist, aging consultants, austin, tx , usa; agingconsultants@gmail.com * correspondence: cjj @txstate.edu; tel.: + - - - academic editor: maureen p. keeley received: june ; accepted: july ; published: july abstract: people with dementia are not dying; they are experiencing changes in the brain. this paper utilizes a symbolic interaction theoretical perspective to outline communicative alternatives to polypharmacy. there is a growing interest in sociological interventions to untangle the “disordered discourses” associated with dementia. such practices challenge common stigmas attached to dementia as an “ongoing funeral” or “death certificate.” changing the expectations, attitudes and communication patterns of family care partners can positively impact them and the person living with dementia at the end of life. this paper delineates multiple non-verbal communication interventions (e.g., the trip back in time, dementia citizenship and sensory engagement modalities) to explore techniques to engage persons with advanced dementia. keywords: communication; symbolic interaction; end of life; family care partners; persons living with dementia . introduction this article uses a symbolic interactionist perspective to view the salience of developing ways to communicate with end of life persons living with dementia. this paper is about radical social change in care partnering with the “persons living with dementia” (plwd). elements of symbolic interactionist theory provide an explanation of experiences and communication patterns of plwd and their significant others at the end of life [ , ]. the phrase “end of life” is used as a relative term because the dying process begins at birth. plwd are not dying from their diseases, they are living with them. moreover, they are aging like all of us; some are aging more rapidly than others. this paper disrupts the commonly held assumptions about end of life dementia care. the authors further inspect partnerships and offer new therapeutic symbols to surround such relationships. when you enter the social world of a plwd at the end of life, there are already well formed negative public perceptions driven by sociological forces of stigma and ageism [ ]. this paper focuses on social exclusion and loss of dementia citizenship and offers strategies to alter family interactions and communication styles to more effectively connect with plwd at the end of life. the symbolic interactions suggested are non-normative and offer methods of making social connections at the end of life with plwd with aphasia. all plwd have disabilities with unexplored abilities and it is those unexplored strengths that we seek to identify for families. the medical definition of dementia views dementia as loss. the alzheimer’s association website defines dementia as a general term for the loss of memory and other mental abilities severe enough to interfere with daily life [ ]. however, this paper follows behav. sci. , , ; doi: . /bs www.mdpi.com/journal/behavsci http://www.mdpi.com/journal/behavsci http://www.mdpi.com http://dx.doi.org/ . /bs http://www.mdpi.com/journal/behavsci behav. sci. , , of the experiential school of thought which defines dementia as a “shift in the way we experience the world” [ ]. . family perceptions of end of life dementia as tragedy and loss sociologist w.i. thomas developed a theory of sociology which maintains, “if men define situations as real, they are real in their consequences” [ ] (p. ). in the context of the disease model of dementia, the subjective interpretation of being diagnosed with the label of dementia influences actions on both the part of the “patient” and the family. in partnerships, all participants negotiate shared meanings. family behaviors are affected by negative views of dementia that already exist in american culture. drawing on the work of w.i. thomas, sociologist robert merton maintains that any definition of a situation influences the present [ ]. the negative expectations and behaviors of loved ones do adversely affect plwd. societal views which associate aging with memory loss are common and such stigmas affect the perceptions of family members [ ]. it is possible for negative stigmas to be projected onto the plwd by significant others [ ]. dementia as a tragedy motif has a long history in american medicine. gerontologists today attack traditional symbolic representations of dementia as loss [ ]. some scholars point out that symbolic meanings attached to the label dementia are interpreted, embodied, or resisted by families in their social contexts [ ]. these processes are shaped according to their social location (ethnicity, gender, and social class) and each plwd’s social history. the plwd’s “death certificate” is not signed with the label dementia. the tragedy lies in the social consequences of stigmas attached to diagnostic labels, described in the united kingdom mainstream press as a “panic blame discourse” producing views of dementia as inevitable loss and decline while simultaneously telling stories about ways of staving off the disease [ ]. this reframes dementia as something within the realm of individual choices and suggests a potential judgment of plwd as not having aged successfully. gerontological literature over the years has been full of negative labels for dementia associating it with dying. decades ago, social workers described the grieving process of families who live with a plwd as experiencing an “ongoing funeral” [ ]. as a result, finding a positive or hopeful view of the disability of dementia amidst such “malignant” metaphors are virtually impossible [ ]. a physician study discusses the lack of reciprocity in family members caring for plwd in end of life conditions [ ]. physicians can offer more positive views of dementia as a disability with abilities. doctors are in a position to dispel myths, stereotypes and stigmas of dementia with family members. the emphasis is on the potential that medical professionals have to educate care partners of plwd by providing information on better non-verbal communication techniques at the end of life [ ]. implementing these skills would enhance plwd’s ability to reciprocate. for example, “such changes have implications for improved care and quality of life through the continued maintenance of social inclusion and perceptions of personhood” [ ] (p. ). doctors can take the lead in destigmatizing plwd as persons with disabilities rather than persons who are dying or dead. studies focusing on dementia as a tragedy theme are prolific and point out different ways in which dementia is experienced negatively. they also suggest that the cultural meanings attached to dementia vary by society [ ]. sociological research in india delineates cultural representations of dementia as being mixed with other symbolic meanings such as the social expectations of aging [ ]. by understanding the different symbols attached to dementia that are culturally-based, families can identify how particular meanings associated with dementia govern others’ behaviors and are sociologically significant [ ]. this perspective allows families to see the implications of cultural representations for those living with dementia, and how these implications may differ according to a person’s socio-cultural background. industrialized societies offer a proliferation of scary dementia stories and labels that are reflected in mainstream media, fictional books and literature. accounts of dementia present this condition as a kind of living death for its sufferers and to their family members [ ]. some have argued that both the bio-medicalization of dementia and the social construction of plwd as “zombies” create fear of the disease [ ]. likewise, this fear marginalizes and disempowers a person given behav. sci. , , of the label of dementia [ ]. public fear translates into “dehumanization based on disgust and terror and influences perceptions of family members, including children” [ ] (p. ). such symbolic representations create public reactions of revulsion and fear of losing your mind that people associate with aging. the language of loss and determinism pervades these cultural symbols of ageism and stigma. for example, the rising tide of dementia has been described as a “tsunami”, suggesting an unstoppable wave [ ]. as a result, these stigmas lay the ground work for negative perceptions for families of persons with dementia [ ]. kitwood [ ] referred to a “malignant social psychology” of dementia, where families experience unfair discrimination, disempowerment and prejudices (stigma, stereotyping etc.) directed toward their loved one with dementia [ ]. others have used such examples as the foundation for his theory of “malignant social positioning” [ ]. labels of plwd as “dying” or being in a “vegetative state” serve as triggers for the frequent social disengagement of family members, especially at the end of life. . end of life and the ‘trip back in time’ johnson and johnson’s concept of the ‘trip back in time’ offers a paradigm which explains how persons experience time travel through the cognitive, emotional, social, physical and functional domains with alzheimer ’s disease (ad) [ ]. the ‘trip back in time’ utilizes a downward spiral diagram with connecting loops (see figure ) to demonstrate the fluctuating, non-linear, but progressive course of the disability. the ‘trip back in time’ from age of onset back to early childhood is both fluid and fluctuating for the ad person. the ‘trip back in time’ model can account for the person’s ability to fluctuate in both memory and recognition of family members as they travel back through time. the capabilities of the ad persons vary throughout, beginning with the changes in short term memory followed by long term memory. the ad person’s physical time travel traverses from normal to super human strength, to reduced ambulation, and finally to the fetal position (i.e., bedridden) similar to a baby in the womb. the connecting loops progressing downward also account for adult development in reverse as identified by previous research [ ]. additionally, the ‘trip back in time’ model allows for the non-linear variances on a daily basis through time travel in all domains. the connected loops demonstrate how an ad person can make small or quantum leaps springing up from the past to the present for brief periods of time. past studies have suggested theoretical time travel although it had not been identified as a ‘trip back in time’ to infancy or what is referred to here as end of life care [ ]. ironically, both the bedridden ad person who has time traveled back to infancy and the infant are more in touch with their emotions than any other time in their life. this is a time when emotions are raw with no pretenses. it is healthy to be in touch with emotions although it can make families uncomfortable, especially when plwd express sadness, loneliness or pain by crying. behav. sci. , , of terror and influences perceptions of family members, including children” [ ] (p. ). such symbolic representations create public reactions of revulsion and fear of losing your mind that people associate with aging. the language of loss and determinism pervades these cultural symbols of ageism and stigma. for example, the rising tide of dementia has been described as a “tsunami”, suggesting an unstoppable wave [ ]. as a result, these stigmas lay the ground work for negative perceptions for families of persons with dementia [ ]. kitwood [ ] referred to a “malignant social psychology” of dementia, where families experience unfair discrimination, disempowerment and prejudices (stigma, stereotyping etc.) directed toward their loved one with dementia [ ]. others have used such examples as the foundation for his theory of “malignant social positioning” [ ]. labels of plwd as “dying” or being in a “vegetative state” serve as triggers for the frequent social disengagement of family members, especially at the end of life. . end of life and the ‘trip back in time’ johnson and johnson’s concept of the ‘trip back in time’ offers a paradigm which explains how persons experience time travel through the cognitive, emotional, social, physical and functional domains with alzheimer’s disease (ad) [ ]. the ‘trip back in time’ utilizes a downward spiral diagram with connecting loops (see figure ) to demonstrate the fluctuating, non-linear, but progressive course of the disability. the ‘trip back in time’ from age of onset back to early childhood is both fluid and fluctuating for the ad person. the ‘trip back in time’ model can account for the person’s ability to fluctuate in both memory and recognition of family members as they travel back through time. the capabilities of the ad persons vary throughout, beginning with the changes in short term memory followed by long term memory. the ad person’s physical time travel traverses from normal to super human strength, to reduced ambulation, and finally to the fetal position (i.e., bedridden) similar to a baby in the womb. the connecting loops progressing downward also account for adult development in reverse as identified by previous research [ ]. additionally, the ‘trip back in time’ model allows for the non-linear variances on a daily basis through time travel in all domains. the connected loops demonstrate how an ad person can make small or quantum leaps springing up from the past to the present for brief periods of time. past studies have suggested theoretical time travel although it had not been identified as a ‘trip back in time’ to infancy or what is referred to here as end of life care [ ]. ironically, both the bedridden ad person who has time traveled back to infancy and the infant are more in touch with their emotions than any other time in their life. this is a time when emotions are raw with no pretenses. it is healthy to be in touch with emotions although it can make families uncomfortable, especially when plwd express sadness, loneliness or pain by crying. figure . alzheimer’s disease (ad) as a “trip back in time”. case study, susan and dan: an -year-old woman named susan diagnosed with ad experiences a downward spiral back and forth through time, traveling and revisiting persons, figure . alzheimer’s disease (ad) as a “trip back in time”. behav. sci. , , of case study, susan and dan: an -year-old woman named susan diagnosed with ad experiences a downward spiral back and forth through time, traveling and revisiting persons, pleasant and traumatic events that occurred throughout her life. she travels in her mind back to age and no longer recognizes significant others who are currently in her life but does recognize pictures of her parents and siblings. imagine that susan is visited by her nuclear family and grandchildren but she mislabels or mixes up the generations calling her son by her husband’s name. the family is frustrated by these actions and assumes susan is confused or “crazy.” again, susan has traveled back to age in her mind and upon looking in the mirror sees an -year-old face and asks “what are you doing in my bathroom?” all along it was the same person, susan, with cognitive fluctuations. later, susan’s -year-old husband dan enters her room and identifies himself as her husband, although in her mind she is years old. when dan identified himself as her husband he imposed his “reality” (time frame and definition of the self) upon susan. this is extremely confusing for susan and can trigger aggression and fear of dan. validation of the ad person’s experiences is empowering for them because to them the experiences are real [ ]. therefore, care partners are trained on how to roughly identify where their loved one with ad is in the time travel experience [ ]. then, they validate the ad person’s definition of the situation and self. validations are accomplished through various forms of non-verbal communication such as sharing old pictures of family and friends from yesteryear in photo albums, listening to music from the person’s distant past and other special interests. instead of labeling the person as having delusions, care partners are trained to recognize the ‘trip back in time’ process, no longer invalidating their reality [ ]. understanding the ‘trip back in time’ model and how to join one on their time travel journey with appropriate communication can help avoid the frustration and heartache from an unnecessary reality orientation. families who understand this model refrain or resist identifying current grandchildren and nuclear family members. these care partners will instead join the person on the trip back in time to connect in their time frame. . symbolic interactions with end of life plwd for family care partners who are in daily interaction with plwd, the symbolic label “dementia” triggers grief due to many social factors. such disease labels cause a great deal of frustration and pain for families as they attempt to deconstruct their view of the self of the plwd. families grieve the person (self) they once knew and then try to reconstruct a new “dementia as tragedy” view of the plwd in what symbolic interactionists call the “sick role.” family usually see the loved one as a “victim of a disease” rather than a person with a disability. this can be the case when there is lack family dementia education in understanding time travel and a more holistic view of the disability through the disease process. there is a great deal of ambiguity around how social expectations drive care partners’ behaviors. loved ones wonder what kind of roles should be enacted, what to say and what to do around plwd in the new status of being bedridden. significant others either adjust their behaviors to accommodate plwd or they choose to disengage, usually with justifications for doing so. communications and interactions between plwd, professionals and family care partners construct a perceptual framework for what needs to be done. culture and society play a role in this construction as well. some of this framework is based upon the preconceived views of significant others (family and friends) about plwd’s bedridden status and her inability to verbally communicate. this perception of “an ongoing funeral” for plwd is socially negotiated and constructed, aided by stereotypes and the media. the meanings constructed of the life of the bedridden persons are created by symbolic interactions that are shared between the plwd, staff and significant others within the culture in which they live. it is through dementia education that care partners can learn how to effectively join the end of life plwd on their ‘trip back in time.’ behav. sci. , , of . medicalized care and end of life dementia care bedridden plwd who are in distress in institutions are often sedated with medications. however, family care partners who understand the role of medications at the end of life dementia care can be advocates for sociological interventions when appropriate. an astounding statistic is that % of the population comprises elders over years of age, yet they consume % of prescription drugs [ ]. according to some, the pharmaceutical industry is driven by profit and most other concerns are usually secondary [ ]. elders are the largest consumers of prescription medications [ ]. end of life dementia care has been increasingly medicalized over the course of the past few decades. some medications are necessary when caring for plwd due to frequent comorbid health conditions [ ]. polypharmacy or over use of medications can be excessive and it does impact social engagement between the family care partners and the plwd. there is a plethora of new research on sociological interventions for end of life plwd. the sociological (non-pharmaceutical) interventions for end of life care can be overlooked by an emphasis on medical solutions to distress in plwd [ ]. recent literature suggests that quality of life for plwd can be significantly improved when the pharmacological treatment is sufficient but not excessive [ ]. anti-psychotic medications are often utilized as both treatment and chemical restraint when the care plan does not expressly limit their use [ , ]. pain or discomfort is frequently difficult for plwd to communicate, especially if they are deemed non-communicative [ ]. as a result, family care partners in long- term care environments may stop making efforts that directly affect medications and dosages. research suggests that under and overmedication as a result of poor communication can increase cognitive impairments in plwd [ ]. a recent study interviewed doctors and disclosed that anti-psychotic medications were frequently prescribed based on the plwd’s exhibition of aggression or anger [ ]. for the bedridden plwd, behavioral symptoms can accompany chronic boredom or loneliness due to sociological factors or lack of social engagement and meaningful activities [ ]. . sensory engagement modalities for end of life person centered care a critical concept in the school of symbolic interactionism is that there is no social life without communication and shared symbols [ ]. there is, in effect, no self. however, by maintaining positive social engagement experiences for end of life plwd, we avoid many medication interventions through expanded two-way communication opportunities. families are challenged to learn and identify symbolic and non-verbal communication interactions or representations (such as pictures, touching, hugs, pointing, smiles, gestures and facial expressions etc.). a smile is a smile in any language. here, family care partners are encouraged to learn to identify the plwd’s facial expressions as ways of understanding and communicating with them. during end of life care for plwd, the borders between the self and environment merge so that care partners are challenged to communicate with persons with advanced dementia through the senses. for example, interventions such as arts-based embodiment engagements like the use of elder clowns has been shown to encourage reciprocal communication between plwd and their care partners [ ]. the efficacy of interventions similar to this within the medical model may be limited, but from a sociological perspective they are meaningful. person centered care (pcc) seeks to maintain the self throughout the disability [ ]. pcc promotes communication in self-determination and empowerment for plwd, and has been shown to generate better communication outcomes in some situations as opposed to the biomedical approach [ ]. at the early stages, pcc can relieve some of the intense stress that accompanies diagnosis for both plwd and care partners [ ]. pcc is a way to connect family care partners to plwd in highly idiosyncratic ways, drawing from the plwd’s person centered life history that relates to sensory stimulation. in order to establish pcc with plwd, care partners can learn how to frame interactions in a manner that generates new meanings within the realm of competencies that plwd maintain at any given point in their disability [ ]. pcc is an alternative to the predominately medical approach to clinical care for plwd as it attempts to link the person’s lifelong habits and behaviors with their ‘trip back in time.’ behav. sci. , , of activating the five senses (taste, touch, smell, hearing and sight) of the end of life plwd is a way for family care partners to connect. for example, family care partners have access to the relevant information on the plwd’s ‘trip back in time.’ creating photo albums using enlarged photos from the past offers better opportunities for recognition, visual stimulation and non-verbal communication. family care partners are in a difficult situation because the photos often do not include them but instead the plwd’s family of origin, parents and siblings. this is an example of how ego can inhibit positive communication. opportunities abound for family care partners who see the possible benefits of these interventions and aim to help plwd. verbal communication is difficult when plwd are bedridden. namaste is an end of life or late stage dementia care program that utilizes the five senses to cultivate communication with plwd [ ]. the namaste program is provided days a week and staffed by specially trained persons who provide activities of daily living in a calm manner, with a “loving touch” approach to care [ ]. the program takes place in a room with lowered lighting, soft music playing, and the scent of lavender nurturing plwd to feel comforted, cared for, and cared about in a unique loving environment. such programs are viewed as vehicles to emotionally connect with bedridden plwd. by stimulating multiple senses, one can increase the chances of propagating positive interactions and communication. accessing taste and smell can be achieved through cooking at the bedside using ingredients that produce odors, flavors and sounds from the past. essential oils that emanate familiar smells and touch using massage, or simply holding hands to convey love and affection, are all legitimate forms of communication. hearing music from one’s past can evoke positive responses and connections. other non-verbal forms of communication that are currently used include visual stimuli through snoezelen (a multi-sensory stimulation therapy in a room created for delivering high levels of stimuli to plwd), pet therapy, doll therapy, robotics, reminiscence therapy with objects and pictures, and other modifications to the milieu which are impactful [ , ]. . dementia citizenship for end of life care citizenship is a human right that is bestowed on all persons. however, when people are diagnosed with dementia their citizenship is often stripped, similar to that of a prisoner, although they did not choose to have dementia. the concept of dementia citizenship is used in dementia studies to promote the status of discriminated groups of cognitively disabled persons. dementia citizenship recognizes the self-cognizance of plwd to exercise rights and responsibilities [ ]. plwd are entitled to live life fully until death. although the notion of citizenship may not appear to be appropriate for persons with severe dementia in their limited decision-making abilities, it still assumes they want and deserve a full social engagement until death. the citizenship approach is a narrative framework in which a person is included in a community and granted the presumption of autonomy [ ]. research indicates that as a concept it is strongly linked to resilience, an important attribute in end of life care both for plwd and care partners [ ]. optimizing the social integration and identity of plwd can have a wide range of positive effects on their course of treatment and quality of life [ ]. these outcomes provide incentives for family care partners to stay connected to plwd. during the course of time travel for plwd, it becomes difficult to maintain integration and identity with their present and former self. identity, in this sense, is inextricably tied to agency that is so important to dementia citizenship. autonomy, in this sense, is the ability for a person to determine their own life course and agency, and can be defined as a person’s capacity to propel one’s self along that life course. dementia citizenship is the recognition of those capabilities. it is the treatment that a person receives when they are perceived and interacted with as unique individuals capable of making their own decisions. the adaptive response to losses associated to those “living with” life-threatening illnesses change as circumstances change. the key is having compassion and genuinely caring for the person. being with the person living with dementia has the potential to be a spiritual experience where nothing has to be said but hearts connect. the communication occurs on a number of levels. one of the behav. sci. , , of authors found this to be true with his mother (who had dementia) just sitting with her and holding her hand [ ]. plwd go through daily adjustments to their disability. among the tasks in coping with life-threatening illness the chronic phase is characterized by “living with the disease” [ ]. unlike compressed morbidity, with chronic morbidity the grief process is prolonged. dying is taboo in modernity but even worse is prolonged bedridden experiences. in industrialized countries like the u.s., japan, or europe, life-threatening illnesses put everything on pause. in such cultures, the care partner can create difficulties in communication and thwart family support of the plwd. for example, lack of communication is a common issue among family members of bedridden plwd [ ]. symbolic interaction and psychological constructivist theories have provided useful understandings of how families create and reconstruct meaning and identity in the midst of loss [ ]. these understandings of living with a chronic illness are applicable to dementia [ ]. similar approaches may focus on the ways that meanings frame the process of dying. for example, it is helpful to postulate how individuals and families identify the self or another as “dying” and how these expectations affect subsequent interactions. such work builds upon early theoretical work in the field [ ]. . discussion family members are challenged to eliminate personal egos in dementia care. it is human nature to want to be recognized by plwd, and to be disappointed when one is no longer known. yet, with the framework of time travel, there will be a day when we cannot and should not continue reality orientation with plwd. social models of care outlined in this paper include the trip back in time; dementia citizenship and sensory engagement modalities for person centered end of life care. in such instances, family care partners play an important role in providing salient symbolic interactions for plwd and this can add to the quality of life. in the medical models, elders living at the end of life with dementia can become objectified. medications are often used to stop plwd from calling out for help, although such efforts are clear forms of communication to the staff. these residents are lonely and benefit from human contact and social engagement. family care partners often feel powerless in the absence of training and education to understand how to communicate with their loved one. as change agents, clinical sociologists are interested in empowering families to learn new non-verbal ways to communicate at the end of life. for plwd end of life care should be tailored to their life history, hobbies, and interests. in the book, the veneration of life, diamond writes: “alzheimer’s is distinguished from most other diseases in that the ego becomes progressively smaller, allowing more and more of the innate spirit to become apparent. in contrast, nearly all diseases are characterized by an increased self-concern. in fact, this may very well be at the root cause of the particular disease. as the patient surrenders to the disease, he becomes increasingly more ego-oriented, radiating ever less of his spirit”. [ ] (p. ) the self, or ego, and environment of the bedridden plwd become one [ ]. end of life plwd have withdrawn into their own social worlds and their vocabularies have shrunk. the environment which surrounds the plwd becomes their world and their reality. this has immense implications for professional and family care partners who are challenged to use the five senses to effectively communicate with plwd. end of life therapies have expanded considerably beyond the medical model in the past few years to symbolically link the milieu with plwd in a powerful dialectic. treatments that minimize or distract from the depersonalizing experiences that accompany institutionalization include namaste, snoezelen and various therapeutic modalities [ , ]. the end of life is full of opportunities to engage in meaningful social connections. the interventions discussed in this paper offer new paradigms for social engagement that can enhance communication. behav. sci. , , of . conclusions the sociological interventions that deconstruct excessively medicalized dementia care include meaningful social connections for end of life persons with dementia. when family members are empowered by learning how to interact on symbolic levels with plwd and join them in their time travel, powerful connections can be made. family dementia education can result in change, while bringing joy to the life of bedridden persons living with dementia. author contributions: christopher johnson provided the conceptual and theoretical idea for this paper, as well as the bulk of the writing. jordan kelch provided an annotated review of the current literature and research support. roxanna johnson contributed emphasis on persons living with dementia and human rights implications for dementia citizenship. christopher johnson and roxanna johnson formulated the concept of dementia as a ‘trip back in time’ and applied it to a new body of literature. all three authors edited the manuscript once complete. conflicts of interest: the authors declare no conflict of interest. references . blumer, h. symbolic interactionism: perspective and method; prentice-hall: englewood cliffs, nj, usa, . . mead, g.h. mind, self and society; university of chicago press: chicago, il, usa, ; volume . . dobbs, d.; eckert, j.k.; rubinstein, b.; keimig, l.; clark, l.; frankowski, a.c.; zimmerman, s. an ethnographic study of stigma and ageism in residential care or assisted living. gerontologist , , – . 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[crossref] [pubmed] © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . /ty -ee j-yvq -rp http://dx.doi.org/ . / http://dx.doi.org/ . /j.jamda. . . http://www.ncbi.nlm.nih.gov/pubmed/ http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	family perceptions of end of life dementia as tragedy and loss 	end of life and the ‘trip back in time’ 	symbolic interactions with end of life plwd 	medicalized care and end of life dementia care 	sensory engagement modalities for end of life person centered care 	dementia citizenship for end of life care 	discussion 	conclusions hospitalized children's experience of a fairy garden in northern thailand nursing open. ; : – .  |  wileyonlinelibrary.com/journal/nop   |   i n t r o d u c t i o n this study explored the experiences of sick children hospitalized in a northern thailand hospital who had access to and were able to take part in recreational activities in a natural and play area titled a fairy garden (fg) located adjacent to the two children's wards in the hospital. an increasing body of research indicates the value of green space such as gardens and recreational facilities to the overall health and well-being of hospitalized children (mccormick, ). how children respond to the facilities of an fg and the impact of such a facility on their well-being as hospital patients can con- tribute to our knowledge in better catering for children in hospital. these green spaces have sometimes been referred to as healing en- vironments (ananth, ), and an evaluation of healing gardens in a hospital setting for paediatric cancer patients indicates potential for this “restorative environment” to overcome the pressures of hos- pitalization for children (sherman, varni, ulrich, & malcarne, ). healing environments can be described in terms of both nonphysical and physical to facilitate the healing process impacting through psy- chological and spiritual dimension of health (abbas & ghazali, ). findings from the study by sherman et al. ( ) concluded that while adults prefer to sit, socialize and walk about the garden, sick children will actively engage with facilities in the garden. the focus of several studies has been on hearing the voice of children as they reveal their views of their experiences while in hospital (brady, ; corsano et al., , ; wilson, megel, enenbach, & carlson, ). wilson et al.’s ( ) study looked at the emotions of children through story telling of their hospitalized received: january   |  revised: february   |  accepted: february doi: . /nop . r e s e a r c h a r t i c l e hospitalized children's experience of a fairy garden in northern thailand pamela van der riet  | chaweewan jitsacorn  | peter thursby this is an open access article under the terms of the creative commons attribution license, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. © the authors. nursing open published by john wiley & sons ltd. school of nursing and midwifery, faculty of health and medicine, the university of newcastle (uon), newcastle, nsw, australia boromarajonani college of nursing, ministry of public health, lampang, thailand educational consultant, newcastle, australia correspondence pamela van der riet, school of nursing and midwifery, faculty of health and medicine, the university of newcastle (uon), newcastle, nsw, australia. email: pamela.vanderriet@newcastle.edu.au abstract aim: to explore through draw, observation and talk hospitalized children's experi- ence of a fairy garden in northern thailand. design: a participatory visual arts method of draw, observations and talk along with clandinin's narrative inquiry framework of three-dimensional space (sociality, tem- porality and place). methods: this study was conducted in a paediatric ward in a large tertiary hospital in northern thailand over months (july – ). a purposive sample of hos- pitalized children aged between and years participated in drawings and face-to- face interviews. the study adhered to the coreq checklist for qualitative research (see supplementary file s ). results: the analysis resulted in five interrelated threads: ( ) representations of the illness experience; ( ) imagination and fantasy; ( ) connection to place, family and home; ( ) moments of social representations of play; and ( ) happiness and enjoyment. k e y w o r d s hospitalized children, narrative inquiry, therapeutic landscapes www.wileyonlinelibrary.com/journal/nop mailto: https://orcid.org/ - - - http://creativecommons.org/licenses/by/ . / mailto:pamela.vanderriet@newcastle.edu.au http://crossmark.crossref.org/dialog/?doi= . % fnop . &domain=pdf&date_stamp= - -   |     van der riet et al. experience. brady’s ( ) study used draw and talk and addressed hospitalized children's views on what makes a good nurse. corsano's et al. ( ) study looked at the emotional reaction to hospitaliza- tion, and corsano's et al. ( ) study looked at the relationship with nurses and doctors. the purpose of the study was not to investigate children's views of what makes a good nurse and their relationships with healthcare professionals but, instead, to explore the experiences of children hospitalized in a northern thailand hospital who were able to engage in recreational activities in a natural garden and play area titled a fairy garden (fg). the fg is a facility with gardens of colourful plants and flowers, short walks through the gardens, play equipment, a cubby house, bridge, gazebo, concrete blue whale, ceramic animals and seating for quiet times with parents or carers (van der riet, jitsacorn, junlapeeya, thursby, & thursby, ). all hospitalized children had access to the fg throughout the day providing they did not have an infectious illness. the fairy garden was easily accessed from both wards so children could en- gage freely in activities during the day providing they were not re- ceiving any scheduled treatments such as chemotherapy or blood transfusions. parents, grandparents and nurses would accompany both small and any unwell children while some children entered the garden unaccompanied. nursing staff were always nearby to monitor activity in the fg.   |   b a c k g r o u n d ( l i t e r at u r e ) the value of nature in urban design through the inclusion of green spaces to benefit human psychological and physical well-being (hoyle, hitchmough, & jorgensen, ) has also been advo- cated in the healthcare industry through the provision of natural environments and outdoor spaces being incorporated into hospi- tal design for the potential healing benefits afforded to patients (dijkstra, pieterse, & pruyn, ; geary, ; horowitz, ; huisman, morales, hoof, & kort, ; ingulli & lindbloom, ; morrison, ; pasha, ; van der riet, ; walker, ; zborowsky & kreitzer, ). abbas and ghazali ( ) recom- mended design features to be included in newly built paediatric wards to include natural and therapeutic gardens, easy access to gardens, play areas and garden activities as best practice in sup- porting better outcomes for young patients. whitehouse et al. ( ) examined levels of satisfaction of a garden environment in a designed hospital for sick children and found that patients, family and hospital staff rated the facility highly in providing gar- den seating, plants and flowers, play equipment and spaces that took sick children away from the pressures of clinical care. pasha and shepley ( ) emphasized the importance of design charac- teristics that would allow hospitalized children to engage in more active behaviours through provision of spaces for play activity, sculptures, gardens, pathways and inclusion of shading for warmer climates. in examining design trends in hospitals in terms of facili- tating healing, ghazali and abbas ( ) indicated that as well as the physical environment users’ satisfaction focused on additional activities to engage patients, art, music and pet therapy. more recent studies had also explored the family member's ex- perience of the fg (van der riet, jitsacorn, junlapeeya, thursby, & thursby, a) and nursing students’ experiences (van der riet, jitsacorn, junlapeeya, & thursby, b). however, there is limited literature on sick children's views of natural and recreational envi- ronments in hospital design. what is particularly beneficial for fur- ther research is the examination of sick children's experience of the garden environment where there are facilities to walk, receive visual stimulation, play and interact with others. the aim of the study was to explore through draw, observa- tion and talk hospitalized children's experience of a fairy garden in northern thailand. our research question was as follows: what was the children's experience of a fairy garden in a hospital environment?   |   d e s i g n a narrative inquiry approach comprising of participant observa- tion and participatory visual arts-based activity was used. narrative inquiry (ni) is the study of experience understood narratively (clandinin, caine, lessard, & huber, ), that is through a rep- resentation of events (clandinin, ). experience in ni is a nar- ratively created phenomena with ni viewed as both methodology and phenomenon (clandinin, ). as our study involved narrative inquiry, the children's experience of the fg was the phenomena we were studying.   |   m e t h o d .  | data collection the study took place in a paediatric unit in a northern thailand re- gional hospital. the paediatric unit consisted of two medical and sur- gical wards with inpatient beds. .  | participants participants were eligible for inclusion if they were children aged four years and over and deemed well enough to participate in the research activities. we selected the age of four as irwin and johnson ( ) have previously advised that in qualitative re- search with children as young as four years there can be discern- ing data. eligible participants and parents were approached by the nurses on the wards. each of the children who were approached pro- vided assent to participate in the drawing activities. however, one child declined to draw. this child participated in the interview, so we still included him in the study.      |   van der riet et al. .  | procedure a drawing station was established in the precinct of the paediatric ward with table and chairs. drawing material was available for each child consisting of white paper and a variety of coloured pencils. the children chose which coloured pencils they would use in the draw- ing and were asked to draw their experiences of the fg. after their drawing, each child was interviewed about their drawings (table ). initially, any uncertainty as to the task was managed by friendly talk to place the children at ease and was conducted in thai by the thai researcher. questions of the children included the following: had they done drawing before, did they like to draw and were they happy to make a drawing that told a story about their experience of the fg? simple language was used to minimize any misunderstand- ings and to check if the children were comfortable in participating. the emphasis was on the children telling their story through drawing so that they could present what was important to them and then to talk about their drawing to clarify their experience. the interviews consisted of the thai translator (who was part of the research team) and the principal researcher (who was not thai) were conducted through the thai translator. interviews were translated simultaneously at the time of the interview and audio recorded, and each researcher made a running record that became a journal of the process. recordings and researcher's notes were also later checked for accuracy. the principal researcher had con- siderable experience in conducting interviews in thailand with thai research colleagues. an introductory explanation of the study and the semi-structured questions were prepared in english and then translated to thai by the thai researcher. while the children were drawing, the researchers made observation notes using a simple name of participant age and gender diagnosis length of stay in hospital tilly years. female neuroblastoma days, however repeated admissions to the ward jill years. female right hernia repair days. previous admission to the ward for left hernia repair pippy years. female ruptured appendix appendectomy days minny years. female recto vesicular fistula. for colostomy the next day days. repeated admissions kim years. female headaches, nausea, vomiting, blurred vision. for neurological investigation and ct scan days elsa years. female productive cough and fever for investigation days grape years. female type i diabetes days elsa years. female infection in her leg day vier years. male appendectomy epilepsy days namcha years. female type diabetes days pisue meaning butterfly years. female juvenile arthritis days messey years. male epilepsy days banana years. female anxiety and associated disorder admitted for abdominal pain days and numerous admissions mickey years. male appendectomy days kitty years., female abdominal pain days ninja years. male appendectomy days diamond years. female glioblastoma days. numerous admissions, craniotomy months ago t a b l e   participant characteristics   |     van der riet et al. grid, noting how long the children drew, expressions on their faces, colours chosen and used. we also noted if they thought about what they were doing before they started drawing or if they went straight into the activity. the amount of time the children drew varied from min to one hour. these observations in our grid and interviews assisted us with our analysis. .  | participant characteristics most of the children were from rural areas and regional provinces in northern thailand. parents were mostly farmers or small business owners. .  | data analysis analysing the data was an iterative process. our data included the children's drawings, our observations of them doing the drawings and our conversations with them after they completed their draw- ings. selected examples of the children's drawings were included in support of the analysis along with observations and postdrawing dis- cussions with children to support our findings. consisted of three stages: . in analysing the data, we drew up a table with columns that included details of the participants, content of the drawing and what the participants said about their drawing and lastly our suggested threads. in this table, we also highlighted words that fitted with potential threads. furthermore, we listened carefully to the translations of audio voice recordings from both the children and ourselves. . a coding schema adapted from boles and winsor’s ( ) study of children with cancer involved looking at the colours, objects and human figures. we also looked for physical markers of illness, cognitive expressions, social expressions and emotional expres- sions (boles & winsor, ). . further to analysing content of the drawings, observations (noted in our grid), conversations with the children along with our notes we used the three metaphorical dimensional space involving temporality sociality and place. (clandinin, ) these three di- mensions of inquiry are central to the conceptual framework of narrative inquiry (clandinin, ) and helped shape the design of the study (clandinin et al., ). clandinin ( ) points out the importance of researchers attending in temporal ways as it takes the researcher to the past, present and future of the person's ex- perience. as narrative inquiry researchers, we also needed to at- tend to the dimension of sociality involving personal conditions (hopes and dreams) and social conditions (cultural, institutional and familial) (clandinin, ). we also needed to attend to the third dimension, that is place, with a focus on the physical con- crete and the topographical boundaries of place where the inquiry and events took place (clandinin et al., ). in the context of the study, place is the fg in a hospital setting between two paediatric wards. .  | ethics approval this study was approved by the first author's university ethics committee and local approvals from the hospital. informed writ- ten consent was provided by parents or grandparents who were the main carers. the study adhered to the consolidated criteria for reporting qualitative research (appendix s ) (tong, sainsbury, & craig, ). family members gave written consent freely, and children gave their verbal assent. each participant was asked to select their own special name for the study (pseudonym). names were chosen from a favourite movie (mostly female participants), a sports person (male participants) and for some a favourite alterna- tive name to their own.   |   r e s u lt s in analysing the children's drawings and their interviews, five in- terrelated threads were identified and interwoven in this article: representations of the illness experience; imagination and fantasy; connections to place, familial-family and home; moments of social representations of play; and happiness and enjoyment. consistent with the work of clandinin ( ), we have replaced themes with threads. these threads are what has resonated across our conver- sations, observations and in the drawings of the children. most of these threads are interwoven and relational and difficult to isolate as just single threads. the dimensions of place (mostly the fg and home), time (past, present and future) and sociality (desire and feelings) are central in all the threads of this study. .  | threads . .  | representations of the illness experience several drawings presented imagery that fell into more than one thread. the illness experience was presented in several drawings. tilly (figure ) drew a series of simple shapes and lines that she associated with particular objects. the illness experience in tilly's drawing relates to what she missed. the cancer treatment for her neuroblastoma had involved chemotherapy, which would cause her to react to food and limit her enjoyment of eating. the representa- tion of herself with no hair is another feature of her treatment al- though within her age group figurative schemas tend not to include many details. items of food feature in her drawing and conversation with us: i want to eat pizza, corn and salad when i am in the fg.      |   van der riet et al. we wondered if this was because she was unable at times to eat due to the side effects of nausea and vomiting from her che- motherapy. along with favourite foods, there are named images of a bathroom, a towel and drinking cups that may represent her per- sonal care due to illness. we noted that the range of imagery in her drawing presented the dimension of temporality (past, present and future) with an emphasis on eating food in the fg. for diamond, a -year-old participant newly diagnosed with a glioblastoma, the exercise of drawing helped her adjust to being in hospital and to her aching head. in her interview, diamond reported: i love art and doing this drawing has helped take away my headache. the activity allowed her to concentrate on something she liked doing. her drawing (figure ) focused on specific objects and things in the fg that she would have actively engaged with during hospital- ization. we were not actually aiming in this study to find that drawing would be therapeutic; however, in this instance drawing gave diamond a voice and may well have had the potential to help her adjust to her illness and in personally focusing on a positive experience. for namcha, years of age with diabetes type the fg as place became a distractor where she could forget her illness and the clinical boundaries of the paediatric ward. this is confirmed in her conversation: when i sit on the swing in the fg i get a feeling that i am not being bothered about anything and the movement backwards and forwards helps me not feel bored. however, we noted that she did not draw herself in her drawing, only those objects of specific interest such as the swings, wishing well, garden walk and cubby house. namcha also told us: i love to sit near the wishing well and i sit there for min. in retrospect, we did wonder if she did make a wish (future desire) at the wishing well in the fg. . .  | imagination and fantasy imagination and fantasy were apparent as a thread in several chil- dren's drawings. through this thread, the dimensions of temporal- ity, sociality and place are evident. sociality is represented in the expression of feelings and desire to be in the present. kim reported that she had not yet taken part in any activities in the garden, yet she placed herself in the drawing (see figure ) sitting on the swing. she is shown wearing hospital attire (blue clothing representing herself in the present moment) and with an expressive attractive hairstyle (a desire to look nice). a series of individual items such as plants and ga- zebo from the fg are drawn together with additional images of items kim imagines could exist in the garden such as a mermaid in a pool, a smiling sun, a trampoline and gymnastic rings hanging on a frame. figure presents the drawing created by banana, who had mul- tiple admissions to the unit presenting with unresolved symptoms of headache and abdominal pain and a history of anxiety and dis- sociative disorder. her drawing shows a small selection of objects from the garden (bridge, slide, swing and wishing well) that she liked. she is seen sitting on the slide, one of her favourite activities in the garden. above the drawing banana has written a story about a friend, a six-year-old girl, who once went to hospital and played in the gar- den. we did wonder if her drawing represented an escape from her reality and was perhaps linked to her diagnosis of dissociative disor- der. her own feelings about the garden are like those of her friend, they both liked the garden, especially the slide, and if they could not sleep, they went into the garden to play on the slide, the bridge and the swing. banana's written story stated that playing in the garden gave them beautiful feelings, made her and her friend happy and sleepy and have sweet dreams. f i g u r e   tilly's drawing f i g u r e   kim's drawing   |     van der riet et al. banana concentrated on her drawing and during the interview was relaxed and happy. we did wonder about the therapeutic na- ture of this, if drawing and the telling of her story through the draw- ing made her feel relaxed and in control of events surrounding her. attending to the dimensional spaces of time, place and relationship in ni, banana focused strongly on her time and place in the garden and her imagined relationship with a little friend who enjoyed the same things she did. food was very central in grape's drawing (figures and ) and in her conversation. she has drawn an angel at the top of the page and pointed out: this angel has magic and can get rid of my illness so that i can eat whatever i like. before i became unwell with di- abetes, i could do everything and eat everything that i liked. i could be like a normal teenage girl. now i have lost my lovely lifestyle of eating sweet food. in her drawing, there is magic in her wishes and desires and this is further confirmed in her interview. grape reported that she did not play on the items in the garden as most were too small for her and also she felt too tired and preferred to walk in the garden or sit on one of the seats. when asked how she felt while in the garden, she said: i feel like a child again! there was a degree of fantasy in diamond's drawing that was inter- woven with a desire for play. diamond tells us that she loves art, and we note that she has drawn a sandcastle (figure ) in her drawing. she recounted: i would like to have a sandcastle and to be able to play in the sand. f i g u r e   banana's drawing f i g u r e   grape's drawing f i g u r e   grape's drawing f i g u r e   diamond's drawing      |   van der riet et al. we wondered if this was a previous experience, she enjoyed and wanted to return to at that time or in the future. however, in northern thailand there are no beaches. she saw the fg as a place for physical activity, imaginative play and an opportunity to make and build a sand- castle. the thai flag was placed in a top and bottom corner and on the cubby house. the garden, contained within a rectangular shape, has been added in an imaginative way to include a sandcastle, digging tools, bucket and toy castle. the colours create a bright environment through her choice of a wide range of colours to emphasize each item. in her representation of the garden, it suggests a conscious desire to tell a story about the fg as a place of imaginative activity for her. the metaphorical dimensions of time (past, present, future), sociality (an inner desire) and place are captured in this drawing. . .  | connections to place; familial- family and home this thread seems to be intertwined with imagination and fantasy of the previous thread, and there are strong representations of the dimensions: sociality, place and temporality. for several of the children, there is a very close desire for con- nection to place and family, place being home. for mickey (figure ), there were lots of fantasy images and memory about family (social- ity) in his drawing. mickey has reimagined the gazebo from the fg and presented a house of three stories, with a gable roof and win- dows. the figure representing mickey stands next to the gazebo, and an animal, the rocking horse, from the fg is shown next to the figure with a rider. at the top of the page, there are images symbol- izing clouds, the sun and the moon. while drawing, mickey links his experience of the fg to his family, particularly his grandfather who was his main carer. his grandfather is central in his story and here reflected in his statement that: i miss my grandfather and every time i go into the fg i think of him and playing together. the dimension of sociality is evident in mickey's drawing as he spoke of bringing his family into the experience of the fg and con- nection to family eased that he was in an unfamiliar place, other than home. identification of place through play becomes an overarching sense of geographical location. we asked ourselves was this a desire for home as mickey is an inpatient? he used the colour blue a lot in his drawing, and he told us that his grandfather liked blue. there is also a strong sense of cultural patriotism representing the dimension of sociality in several of the children's drawings by including the thai flag. importantly, in ni experience is continuous, relational and social (clandinin, ). this is evident in this thread along with the temporality of the past represented in mickey's draw- ing, along with place in the present and future for his grandfather to be with him in the fg. . .  | social representation of play interestingly, there were only two participants who drew other chil- dren in the garden with them. both minny and elsa added second figures in acknowledgement of the social character of the fg. threads of social representation and happiness and enjoyment intermingle in presenting the figures together as each figure is colourfully drawn with smiling faces. elsa (figure ) drew a little boy next to her as they played in the fg and they wear pink pyjamas provided by the hospital. several drawings by the children symbolized play and engage- ment with social activities characteristic of daily activities, signifying the dimension of sociality. for example, tilly drew (see figure ) a yellow sand pit, a bathroom and toy box and there is a little baby. she clearly liked the fg and told us that she played in the garden three times a day. her drawing crosses threads to consciously express the illness experience as well. the fg represented for tilly a place of play and fun with items relevant to her at her age we also note from our observations that tilly really engaged and immersed herself in the fg and she was very eager to show things in the garden that she liked, that f i g u r e   mickey's drawing f i g u r e   elsa 's drawing   |     van der riet et al. is the swing, swinging bridge and slide, all play equipment involv- ing movement. after the interview, tilly was very active running around in the fg, moving backwards and forwards, spending time socializing at the table with the other children who were doing their drawings and being interviewed. although this was a little disruptive, we did not have the heart to send her away, so just let her be. we were aware in our research that with such a vulnera- ble participant we needed to be flexible in our approach to data collection. in minny's drawing, there were a series of items from the garden including cubby house, swing and small ceramic animals. minny has drawn herself in the garden and next to her is another child. each is represented with bright colours, expressive faces and hair in pat- terns to represent a boy and a girl. . .  | happiness and enjoyment the thread of happiness and enjoyment is probably the strongest of all the threads with acknowledgement to the dimension of sociality and place. all the children told us that the garden made them feel happy and joyful and that it was beautiful place to come and play as there were nice things to see and do. many of the drawings with figures presented happy, smiling faces, and none of the drawings indicated negative emotional expressions such as frowns, tears or downturned mouths. in kim's drawing (figure ), there was a lovely smiling sun above the gazebo, and minny (figure ) had a smiling sun looking over the garden. minny stated that she liked drawing herself in the garden and that she liked to sit on the whale, the swing and the slide. even tilly, despite her life-limiting illness of a neuroblastoma, was still full of energy and appeared from our observations happy engaging in the fg. happiness is evident in the following comments from partic- ipants and is interwoven with the previous thread of play, subse- quently signifying the dimension of sociality: the fg gives me beautiful feeling and i am happy playing in the garden with the other children (banana). i love to make drawings and being in the garden. it makes me happy and i want to play in the garden all of the time. (elsa ) kitty made a colourful drawing of the things she liked and told us she played in the fg every day. she enjoyed the swing and the slide and has drawn herself waiting to take a turn on the swing. the swing occupies two-thirds of the upper part of the page and has a pattern of hearts and diamonds on the ropes. when we asked her how she felt when she visited the garden, she said: i feel enjoyment and fresh, compared to when i am inside of the hospital. in the fg i play three times a day in the morning, afternoon and in the evening. there is a strong personal link here to the place of the fg in her experience and involvement with the garden and a sense of happiness to have such a place for relief and distraction from the clinical environ- ment (figure ). during the interview, pippy had an intravenous cannula in her right hand. she still wanted to draw even though we offered her not to do a drawing if this created discomfort for her. we note that she did not draw herself with a cannula in her hand. in her draw- ing, pippy sitting on the swing had a happy face with decorative eyes embellished by prominent eye lashes and attractive hair style. the structure of the swing has a decorative pattern of rectangular shapes, and the figure and objects have been carefully coloured (figure ). f i g u r e   minny's drawing f i g u r e   kitty's drawing      |   van der riet et al.   |   d i s c u s s i o n findings that have emerged in this study suggest that the children perceived the fg through a lens of illness experience, imagination, fantasy and connection to place and family. it brought enjoyment and happiness for all of them. in the data, there are links to the past, present and future and this came in through their drawings and conversations (mostly about feelings) with us. the discussion now turns to what can be learnt from hospitalized children's expe- rience of a fg and application of what we have learned for future practice. the fg was a means in closing the spatial gap between the biomedical model of illness and a therapeutic environment of play and fun. there is a need to rethink models of care for chil- dren that includes elements of humanized care that focuses on environment spaces that encourage social play and fun. wilson's et al. ( ) study explored children's stories about hospitalization and identified that playing with others helped improve their hos- pitalized experience. the importance of play, especially outdoors in nature, has been the topic of pilot studies conducted by primary care paediatricians who have given prescriptions to children to spend more time outdoors in nature in play activities (christiana, battista, james, & bergman, ). mccormick’s ( ) systematic literature review involving the impact of green space on children's mental well-being identified that it improved stress and well-being of children and recommended healing gardens in hospital settings to enhance health by promoting outdoor play. ozcan ( ) argues that paediatric patients are more sensitive than adult patients to the environment and, therefore, the impact of healing is more significant when there is engagement with healing environments in the hospital. best practice in paediatric wards supports the creation of healing environments that include opportunities for play and accessibility to outdoor therapeutic gardens (abbas & ghazali, ). the thread of happiness and imagination is consistent with other studies on the fg with the nurses and also student nurses reporting that they ob- served happiness and there was a sense of imagination and play (van der riet et al., ; riet, jitsacorn, junlapeeya, thursby, & thursby, a; riet, jitsacorn, junlapeeya, thursby, & thursby, b). in previous studies, play in the garden was seen as a distractor from illness (van der riet et al., ) and this was consistent with what we found. in particular, the fg offered an escape from the boredom of the clinical environment. the children in this study all reported in the interview the fg made them feel happy and gave them joy. attention to relationship building was important in this research for several reasons. firstly, it is important as we were researching with a vulnerable population and several of the children were doubly vulnerable as they had a terminal diagnosis (glioblastoma and neu- roblastoma). we were conscious that the children with cancer are a doubly vulnerable cohort due to their very young age and life-lim- iting and threatening illness (boles, ). boles and winsor ( ) have emphasized the importance of building rapport with children and parents. furthermore, huang et al. ( ) emphasized the im- portance of developing child-friendly strategies in building rapport with children to ensure a trustful and equitable relationship exists. unbeknown to the children participating in the study, the research- ers gathered together a variety of small gifts for the children fol- lowing completion of their interview. examples of gifts included a small tea set, comic books, dinosaurs and drawing material. each child chooses a gift. as researchers, this was a way of honouring and thanking them for their participation. we praised the children on their drawings. .  | limitations and strengths a limitation of this study could well be that that we really did not look in detail at the development levels of the children's drawings, that is the mental schemas that show representation of images. we have not reported in detail any gender differences in the children's drawings, and this could be seen as another limitation of the study. our strengths, however, are that we were flexible in our approach to our research and acknowledge data collection methods need to be flexible in researching with children (boyles, ). for example, we were accommodating in enabling each child to take time when drawing. we allowed tilly to freely come and go during the draw and talk processes, and we were encouraging in enabling the children's voices to be heard. another important strength was our method of using draw- ing to communicate the children's lived experience of the fg. drawings provided possibilities of how children perceive and com- municate their experiences of their world (carter & ford, ). in drawing, children are able to engage and express their views and imaginations (driessnack, ). this point is further ex- plained from the united nations convention on the rights of the child / uncrc in article – which points out that children have a right to express their experience through forms of representation such as text, spoken words and visual methods (khoja, ). there are also studies that have concluded that drawings give children access to a voice in telling their stories that f i g u r e   pippy's drawing   |     van der riet et al. they might otherwise have difficulty in presenting (brady, ; pipe, salmon, & priestley, ; weinle, ; wesson & salmon, ). it has also been asserted that drawing may promote children's agency (greene & hogan, ; mannion, ). the opportunity for young children to present their stories places the emphasis on the child as agent of their experience and have their experience and be honoured. there is also recent literature that points out the im- portance of having a child's perspective rather than taking the child's perspective (bryan, bluebond- langner, kelly, kumpunen, & oulton, ; coyne & harder, ; nilsson et al., ). in the co-construc- tion process of research, lim and lim ( , p. ) remind us that “both adult and child are equal players and the resulting dialogical pro- cess plays a major role in the constitution of the phenomena.” boles ( ) argues for a culturally appropriate and child-centred approach to research that captures both verbal and non-verbal data. more recent work by boles & windsor ( ) support data collection that is child-centred and directed by the child. furthermore, in our study we chose draw, observation and talk as a method to capture both verbal and non-verbal data. in essence, the method of drawing a child's experience can be seen as data directed by the child. another strength was that we engaged in a high level of reflexiv- ity. for example, straight after the interviews with the children both researchers met to discuss and clarify any tensions or concerns. we were very mindful in our approach to our observations, the inter- views and analysis of the data. having raised the issue of reflexivity, we now address this as a means of ensuring trustworthiness and rigour in our qualitative study. .  | rigour and trustworthiness we would argue that in establishing trustworthiness and rigour in our study our strong focus on reflexivity ensured our research demonstrated rigour and trustworthiness. reflexivity has certainly become a critical topic in qualitative research (shaw, ) and an elusive term (van der riet, ) that requires the researcher to op- erate on multiple levels (etherington, ) through self-awareness and ensuring there is methodological cohesion. for example, ensur- ing the research question and aim match the methodology (van der riet, ). in our study, the research aim involved experiences of a fg and this was clearly cognizant with a ni approach that focuses on the phenomena of experience. we were mindful that the stories that we told through the children's drawing were both our stories from the participants and the researchers. this is consistent with narra- tive inquiry as it is relational methodology. trustworthiness of the data is also linked to credibility, de- pendability, confirmability and transferability (guba & lincoln, ). in relation to dependability and credibility, we kept a very careful audit trail in keeping journal notes, meeting with each other straight after the interview to discuss any differences and confirm our understandings. this procedure was important, espe- cially as the main author was not from the thai culture. credibility is achieved through triangulation of the data, and we achieved this with the transcripts, drawings, field notes and our reflective jour- nals. our triangulation of data assisted in ensuring data saturation. generalizability has become a controversial topic (carminati, ). we would argue that generalizability is at odds with narra- tive inquiry methodology and fits more with a positivistic paradigm of quantitative research. narrative inquiry researchers attend to participants’ stories as they are composed over time and in rela- tion to people and situations at various different places and social settings so there is less likelihood of generalizations and certainties (clandinin, ) in ni studies such as ours.   |   c o n c l u s i o n through the physical representation of drawings and conversations with the children, we saw in this study a different world, one where there is an escape from the medical representation and boundaries of hospitalization. the fg brought a community/play environment that counters the biomedical and clinical environment. we would argue that healing environments and green space such as the fg have had a positive experience for the children in this study and pro- vide a more humanized approach to the care of hospitalized children. globally, a top priority for healthcare services now in the area of paediatric services is to build more natural landscapes for hospital- ized children to engage in play, lessen stress and escape the bore- dom of clinical unwelcoming spaces.   |   r e l e va n c e t o c l i n i c a l p r a c t i c e creating therapeutic environments for sick children benefits their hospital experience and provides more humanized care in helping to provide an escape from the clinical environment and assuage the stress of medical procedures. a c k n o w l e d g e m e n t s we would like to thank the participants for their participation in the study. c o n f l i c t o f i n t e r e s t we have no conflicts of interest to declare. a u t h o r c o n t r i b u t i o n s pv, pt: data design. pv, cj: data collection. pv, pt, cj: data analysis. o r c i d pamela van der riet https://orcid.org/ - - - r e f e r e n c e s abbas, m., & ghazali, r. 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cam about our ability to stimulate self- regulating and self-healing mechanisms whose pervasive role in medicine ernst and singh acknowledge, is tragically neglected. dismissing the results of the bristol homeopathic hospital clinical outcome study on the grounds of explanations other than the effect of homeopathic medicines (some of which are tendentious and don’t reflect a diligent study of the research paper), they ignore the core fact that for whatever reason many patients with a long and continuing history of significant illness despite conventional treatment did remarkably well. the question is not ‘do cam treatments show efficacy in formal trials’, but ‘do they enhance patients’ whole wellbeing and quality of life?’ and if so how? and by what means can we make better use of whatever is the answer to ‘how’? and what more can we learn about health, illness, and the human condition in the process? surely this should be the agenda of an academic department of complementary medicine? surely its original remit to investigate the scientific basis of cam did not preclude this? surely it was not merely to investigate whether cam can be fitted into the same box as conventional medicine; made to fit the prevailing medical model? to conclude, this book offers a salutary critique of the problems that beset the investigation and integration of cam in relation to conventional medicine, but by a more genuinely truthful and truly scientific examination of its subject it could have enlarged our vision of health care. unfortunately it only serves to perpetuate a kind of scientific tunnel vision. jeremy swayne references . healthwork uk. national occupational standards for homeopathy. bristol: healthwork uk, . . godlee f. reclaiming the placebo effect. bmj ; ( may): doi: . /bmj. . . http://www.bmj.com/cgi/content/full/ / / ?rss= (accessed sep ). . spence ds, thompson ea, barron sj. homeopathic treatment for chronic disease: a -year, university- hospital outpatient observational study. journal of alternative and complementary medicine ; ( ): – . doi: . /bjgp x edzard ernst — a response trick or treatment? alternative medicine on trial is not a book against alternative medicine, it is a book in favour of good evidence and single standards in health care. jeremy swayne admits that ‘truthfulness is an essential attribute’ but criticizes our book for lack of ‘wisdom and discernment’, ‘lack of … balance’, neglecting ‘the positives’ and disregarding ‘the power and importance of non-specific and placebo effects’. he concludes by accusing us of ‘scientific tunnel vision’. these are strong words which require a robust response. using our chapter on acupuncture as an example, we can effortlessly demonstrate that we bend over backwards to present the current evidence as balanced and truthfully as possible. we discuss the history and complexities of clinical trials and the best current scientific evidence in much detail. the truth is that, according to this evidence acupuncture might be effective for some types of pain and nausea. the truth is that even this evidence is not fully convincing (nice recently recommended against using acupuncture for knee osteoarthritis, the flag-ship indication of acupuncturists!). the truth is that it is not free of risks. the truth is that it is expensive compared to many other effective treatments. the truth we present is based on the best available evidence, which means that sometimes we endorse therapies (for example, several herbal treatments) and sometimes we have to be very critical about them (for example, magnet therapy). but swayne does not appreciate this type of truth. why? presumably because, when our truth is applied to his pet therapy, homoeopathy, this form of treatment appears like a sick joke. in his endeavor to promote his type of ‘truth’, swayne wants us to discuss the failings and faults of conventional medicine. we do not deny that these exist. maybe, one day, when we write a book about conventional medicine, we will discuss them in detail. but, writing about alternative medicine, we think it is fair to mention them only in passing. and finally, swayne points to the importance of the placebo effect. but so do we, even in much detail. the difference is that we try to apply just one standard while swayne uses two. the placebo-effect is clearly powerful, thankfully we both agree on that. swayne believes this justifies the routine use of homeopathy and other ineffective treatments. we point out that you don’t need to administer a placebo to generate a placebo response — effective treatments do that too and they convey specific effects as well. the logical conclusion therefore is that, by using pure placebos, we do our patients a grave disservice. so who is suffering from ‘tunnel vision’? we suggest the readers of this debate go to their library, take out our book trick or treatment? alternative medicine on trial and make up their own mind. edzard ernst reference . national institute for health and clinical excellence. osteoarthritis nice version — draft guidance for consultation. nice: london, . http://www.nice.org.uk/guidance/index.jsp?action=d ownload&o= (accessed sep ). doi: . /bjgp x the rise of h ottawa celeste digiovanni thesis submitted to the faculty of graduate and postdoctoral studies in partial fulfillment of the requirements for the degree of master of arts in sociology department of sociology faculty of social sciences university of ottawa © celeste digiovanni, ottawa, canada, table of contents list of figures……………………………………………………………………iv abstract…………………………………………………………………………..v acknowledgements………………………………………………………………vi preface……………………………………………………………………………vii-viii introduction……………………………………………………………………… - chapter : a review of the literature………………………………………… - . water………………………………………………………………………… - i. bottled water…………………………………………………………………. - ii. privatization of water………………………………………………………… - iii. environmental impact of single-use plastic water bottles …………………… - iv. water in canada ……………………………………………………………… - . sustainability ………………………………………………………………….. - i. sustainable development……………………………………………………… - . universities in canada………………………………………………………….. - i. the corporate university……………………………………………………… - conclusion of literature review………………………………………………….. - chapter : conceptual and theoretical frameworks……………………………… - . introduction to conceptual frameworks………………………………………… i. ethical consumption …..……………………………………………………….. - ii. reputation ………………………………………………………………………. - . introduction to theoretical frameworks…………………………………………. - i. ecological modernization………………………………………………………… - ii. green marxism …………………………………………………………………… - chapter : methods…………………………………………………………………… - . introduction………………………………………………………………………… . qualitative research ………………………………………………………………. - i. living action research…………………………………………………………… - ii. interviews…………………………………………………………………………. - chapter : discussions and findings…………………………………………………. - . introduction to living action research findings…………………………………. i. living action research findings…………………………………………………. - . introduction to interview findings…………………………………………………. i. economic return………………………………………………….………………… - ii. environmental impact…………………………………………………………….. - iii. corporate university ……………………………………………………………… - iv. reputation ………………………………………………………………………… - v. ethical consumption and social good…………………………………………….. - vi. employee and student dedication ………………………………………………… - vii. ecological modernization theory…………………………………………………. - viii. green marxism ……………………………………………………………………. - chapter : conclusions ……………………………………………………………….. - works cited……………………………………………………………………………. - appendix ……………………………………………………………………………… - ix. appendix …………………………………………………………………………. x. appendix …………………………………………………………………………. - xi. appendix …………………………………………………………………………. xii. appendix …………………………………………………………………………. xiii. appendix …………………………………………………………………………. xiv. appendix …………………………………………………………………………. - xv. appendix …………………………………………………………………………. xvi. appendix …………………………………………………………………………. xvii. appendix ………………………………………………………………………….. - xviii. appendix ………………………………………………………………………… ii xix. appendix …………………………………………………………………………. - xx. appendix …………………………………………………………………………. iii list of figures figure : table of codes…………………………………………………………………… iv in , the university of ottawa (hereafter, uo) banned the sale of single-use water bottles. uo decided that the sale of this product ran contrary to their commitments to environmental, social, and economic sustainability. this ban has been adopted by several institutions, locally and globally. however, there is still demand for portable water that operates within the boundaries of sustainability. i developed h ottawa at uo, through my internship with the office of campus sustainability (hereafter, ocs). the goal of h ottawa is to bring portable water to the uo community without compromising the institution's allegiance to sustainability. to do this, we are selling multi-use, metal water bottles in vending machines and select cafés on campus, for the same price one would expect to pay for single-use bottles ($ . ) . i have used a living action research approach, as defined by mc niff and whitehead ( ) to document and analyze the planning, conceptualization, and implementation of this project. for the purpose of this research, i consider that the uo adopts the mentality outlined through ecological modernization theory (hereafter, em). in short, em argues that sustainability can be achieved within a capitalist society. i will use a green-marxist lens to position the critical analysis of this project. here, it is argued that we cannot ‘buy our way out of trouble’, meaning that a revolution is necessary to achieve a sustainable society. i will argue that as an institution, the uo makes its goals towards sustainability compatible with a corporate understanding of environmental responsibility. this thesis aims to answer: how does the uo implement sustainability initiatives in a way that complies with the value-set of the university, while also satisfying community expectations? i have found that the uo implemented h ottawa to provide students with access to potable water, and to augment their reputation. considering that this project is the first of its kind, its adoption reinforces uo’s commitments to sustainability and innovation. research findings will be of use for future students, as i present challenges involved in the conceptualization and implementation of sustainability-motivated initiatives within the canadian university context. v all monetary figures will be evaluated in canadian dollars acknowledgements i would like to send out a massive ‘thank you’ to each and every individual who has helped my project along the way: every employee i have had the pleasure of working with, every student who purchased a bottle or showed interest in h ottawa, every interviewer and journalist, and all ottawa businesses who continue to show interest and support the initiative. a big, big thank you to nathan young, my academic (and more generally, life) mentor; i am not confident that i would have found my love for the environment without your infectious passion, guidance, and support. to my dad, joseph digiovanni, thanks for always believing that i would accomplish whatever i set out to. also, to my husband, michael nesrallah, thank you for dealing with all of my ups and downs; your emotional support has contributed to the strong woman i have learned to become. i never guessed that sociology would lead me onto the path of social entrepreneurship, but here we are… and here we go. vi preface i began my journey as a sociology master’s student at the uo in . on my first day of classes in this new school, i stopped at a café to grab a bottle of water before my lecture. i came to learn that the uo had banned their sale in . i could not understand how the second home to over students (not including staff), banned the sale of this most basic health item. for my qualitative methods class, our end of term project was to design and administer an interview. i was inspired to find out why this institution did not sell bottled water, and put an end to this perceived madness. i did my research and found that, in fact, my limited access to portable water was a small inconvenience compared to the global, and even local, issues surrounding water rights. i interviewed my current internship supervisor, jonathan rausseo, about these issues and was convinced to agree with the reasons as to why the uo banned the sale of bottled water. being a s baby, i realized for what felt like the first time, that i did not remember life without bottled water. on the one hand, the ban made good sense, but on the other i knew that my community- same as me- would argue that students are always on the move, so easy access to portable water is important! this is where the project started. jonathan invited me to think of a way to provide students with portable water on campus without infringing upon the uo’s commitments to sustainability. i concluded that the uo should sell inexpensive aluminum bottles for students to fill up and go, and was determined to see this to fruition. people want portable water, but they do not necessarily want to support exploitative companies who produce it. in this context, using a vii reusable and accessible container to replace single-use bottles seemed to make sense. that being said, ‘h ottawa’ began as an idea in mid- and became a reality on world water day . i am proud to note that i created the h ottawa initiative; i alone, knocked on the doors of faculty members, tirelessly worked to find suppliers, ceaselessly petitioned for the project’s acceptance, celebrated (and cried). however, if it were not for the incessant support of my internship supervisor, jonathan rausseo , and the university of ottawa staff more generally, this project may not have come to fruition. the two of us were a well-suited team as i am a third year master’s student at uo, focusing on corporate sustainable development within the field of environmental sociology, and jonathan is a uo environmental studies graduate, who is now employed by the university to act as a liaison between student sustainability projects and university officials. the collaboration of science and social science students is not always possible, but in this case it was, and resulted in the well-rounded conceptualization and implementation of the h ottawa project. viii world water day is march his official title is campus sustainability manager introduction the h ottawa project was made possible through the uo’s ban on the sales of single-use bottled water. first, this ban created a gap between potable and portable water, which the h ottawa bottle aims to fill. additionally, the ban gave uo an incentive to construct more water fountains on campus. according to the university of ottawa water fountain report ( ), “a pivotal part of going bottled water free was the revitalization of the drinking fountains on campus. as the stewards of the water infrastructure network on campus, facilities, undertook the task of surveying all the fountains on campus, repairing those in bad condition, and installing new fountains where appropriate. there are currently drinking fountains on campus that are available to the community” since the mass production and availability of bottled water, public water supplies, such as water fountains, have diminished in presence and quality. according to the girard et al. ( , ) the university of ottawa was not alone in this respect: “a major concern voiced by students on (canadian university) campuses… is the lack of water fountains in buildings and the pervasiveness of bottled water”. the university of ottawa was the first institution in ontario to ban bottled water in , and attempted to supplement this ban through the construction of water fountains. public buildings in ontario are required to provide their guests with access to potable water. through the safe drinking water act ( ), buildings are required to test their potable water to fulfil the standards outlined by the government of ontario. here, buildings may provide drinking water through their taps, and/or by selling quality bottled water. when uo banned the sale of bottled water, they subsequently agreed to provide greater access to potable water through fountains. the university believed that expecting students to cup water from bathroom taps was an unsatisfactory solution, thus invested over $ to provide their community with modern water fountains in good working order (report on sustainable development at the university of ottawa, ). uo’s ban the bottle campaign was spearheaded by jenna dunsby who worked with other students and ocs to inform her community of the ethical and social implications surrounding the bottled water industry. through her tireless campaigning, she convinced enough students, professors, and university staff that this was a positive change towards sustainability. officially, uo decided to ban bottled water for the following reasons: “ ) removing bottled water and increasing access to water fountains represents significant savings for students. bottled water can be cost prohibitive, whereas water fountains are free; ) in a small way, the number of plastic bottles on campus would be reduced. although the possibility of bringing your own bottle of water on campus still exists, encouraging campus community members to drink from fountains would reduce the total number of disposable bottles; ) encouraging the use of bottled water subtly undermines the use of public utilities. the city of ottawa has some of the cleanest water in the world, and it is counterproductive to sell a product on campus which is already readily available for free” (university of ottawa water fountain report, ) here, uo recognizes that banning the sale of bottled water has the potential to save students money. in my own discussions with ocs, university staff believe that programs such as these teach students to trust the public utilities our institution offers, while also freeing up spending money. from the university’s standpoint, offering bottled water for purchase on campus had many unnecessary costs. most importantly, the price of bottled water is high, as it includes delivery fees and high profit margins, while uo had to pay for disposing the waste it produced; these fees were believed excessive for a product that uo already provides (interview transcripts, ). from a macro-perspective, uo argues that “co emissions associated with the fuel used uo’s water fountains are maintained based on the following criteria: the presence of a gooseneck spout that can be used to easily fill reusable bottles; taste; meeting accessibility requirements presented by standards for barrier-free design ontario; water pressure; water temperature; fountain cleanliness (university of ottawa water fountain report, ) jenna worked with student groups, the student federation university of ottawa (sfuo), food services, and ocs to make the banning of bottled water possible. to transport (the bottles) to the campus…electricity consumed to refrigerate the vending machines selling bottled water… (and the) energy required to recycle the disposable bottles” is costly financially, but also environmentally (university of ottawa water fountain report, ). although the ban first cost the uo money, as ~$ was required to improve the drinking water system on campus, other sustainability initiatives, such as the one discussed here, stemmed from it. the report on sustainable development at uo ( ) came to reveal that improving water fountains actually saves the institution about $ . million/year. these investments and their follow up reports show uo’s commitment to sustainability, and further incentivize uo to foster more initiatives. h ottawa came out of residual demand for water on campus. when bottled water was first banned, some students objected, arguing that university officials were taking away their purchasing power and healthy beverage options (interview transcript, ; le, ). uo’s student newspaper, the fulcrum, released an article a year after the ban regarding the community’s response. the article outlined overall, that students understood the ban was “a step toward a more sustainable campus, a smaller ecological footprint, more access to public water fountains, and less money spent on something that is virtually free” (le, ). despite this, the university of ottawa’s conservative club argued against the ban, stating that “students do not carry reusable water bottles, or [they] have classes in those parts of campus where water fountains are not easily accessible” (le, ). student-written articles reflecting upon the aftermath of the ban make it evident that they accept the tenets of sustainability it embodied, but would appreciate access to portable water on campus. h ottawa received attention by university officials as it satisfies both these demands and for the same price as a generic, single-use bottle of water . the banning of bottled water took about seven years to implement. a big complication were contractual commitments with companies such as coca cola, that demanded the university sell its bottled water product (dasani). for decades now, student groups have mobilized to warn their university administrators about signing into contracts with companies such as coca cola. they argue that coca cola has been found to conduct themselves unethically, specifically in countries such as india and colombia, where there have been allegations of mistreating employees (brownlee, ). for various reasons, students do not want the universities that they represent to be involved with corporations such as these. despite the eventual success of the ban of bottled water, the divide in the uo community is worth mentioning. in canada, universities receive the bulk of their funding by respective provincial governments. recently, the government of ontario has frozen their funding of post-secondary institutions. as a whole, university revenues are declining while operating costs are on the rise. currently, the ontario provincial government is in no state to “fund the shortfall…(as they are facing) a sizeable deficit” (roadmap at destination , , ). the ontario provincial government has urged universities to partake in ‘differentiation’, where they are encouraged to further excel at their individual strengths, rather than working on new ones (roadmap at destination , , ). universities report on how they are accomplishing the latter, and from these, the ontario provincial government will allocate funds as outlined through their new models. one of the ways that uo plans to ‘differentiate’, is through “play(ing) a leading role in the cost of this aluminum bottle will be $ . which is comparable to the cost of single-use bottled water in downtown ottawa finding innovative solutions to environmental problems and training the green leaders of tomorrow” (roadmap at destination , , ). h ottawa will play a part in this process. h ottawa plays a part in differentiating the uo from other canadian universities in the realm of sustainability, as we are the first university in the country to implement this kind of project. administrators at uo have been active in fulfilling this through including the project in marketing initiatives, pitching it to various media outlets, and defining it as a part of what uo is trying to accomplish as a whole. uo sees this project as positive to their reputation, thus featuring it on the main page of their website, and using it to attract private donors through the defy the conventional program. projects such as this one proves that sustainability is valued at the uo and makes room for future initiatives. due to the novelty and aim of this project, it is expected that the larger ottawa community will be interested in the institution that facilitated its implementation. the uo is one of the most sustainable universities in canada by national standards (stars, ). this has been achieved in part by uo’s sustainable development committee, whose “mandate is to provide advice and put forward ideas of the university’s administrative committee on best practices pertaining to campus sustainability… (this group) is composed of representatives from the staff, faculty, student body, and community” (university of ottawa, , ). the idea of sustainability, which will be discussed in more detail below, has been important to uo well before the implementation of this committee in . the university’s first sustainability initiative dates back to , when the decision was made to hire an engineer for the purpose of managing the campus’s energy consumption (university of ottawa, , ). canadian universities to not have a cohesive ranking system. when it comes to sustainability, the stars ranking system is considered to be the standard. through my work with uo, i argue that the university has managed to uphold this tradition, working to implement sustainability strategies where it is found to be reasonable. this thesis analyses the conceptualization and implementation of the h ottawa sustainability initiative. for the purpose of this research, i will be using a living action research approach outlined in mc niff and whitehead ( ). as the creator of the h ottawa project, i have been active throughout its duration; reporting on my experiences provide a holistic view of the initiative. for the purpose of this research, i argue that the uo operates in a manner consistent with the ecological modernization approach to environmental problem-solving (blühdorn, ; carolan, ; cato, ; langhelle, ; mol and spaargaren, ; spaargaren and mol, ). my research will show that the uo conceptualizes sustainability in ways that are consistent with other canadian universities, corporations, and governments. following from this, my critical analysis of the institution's actions will use a lens of green- marxism (carolan, ; cato, ; harris, ; johnston ; mol and spaargaren, ; smith, ; young, ). here, it is argued that institutions claim to accept sustainability without changing modes of production, which support consumption habits. employing more sustainable methods of production or procurement are not sufficient for sustainability, as they do not account for over consumption; it is argued that this directly contradicts the overall goal of sustainability. the second chapter of this thesis will be the literature review. to begin, i will provide an overview of the arguments surrounding water privatization in canada, which inspired the h ottawa program. next, i will outline the literature surrounding sustainability and sustainable development, as it is through these lenses that the project was created. here, i will focus on the definition of sustainable development presented in the brundtland report, as it is this version that is adopted by uo. finally, i will present the literature regarding canadian universities as a whole. the third chapter of this thesis will present the conceptual and theoretical frameworks that guide this research. the concepts i have worked with include the ethical consumer and reputation. the success of h ottawa depends upon the wants and needs of the consumer; it will be argued that in universities, consumers are generally ethical. the importance of reputation to a university’s success follows this discussion. i will then argue that similar to other canadian universities, the uo operates within the confines of ecological modernization theory. it will be argued that the structure of h ottawa is consistent with the idea that “there is no essential tension between the way our economy and society function, and a healthy environment, therefore there is no need for fundamental social or economic change” (cato, , ). i will complete this section with a critique of my project and its implementation using the green-marxism theory. while h ottawa aims to address the environment through reducing the purchase of one time use bottled beverages on campus, its essence is consumption. the fourth chapter of this thesis will outline my approach to living action research adopted from mc niff and whitehead ( ). i will argue that this was the best approach to data collection considering my role in the implementation of h ottawa. from this i will present my use of structured interviewing as supplementary data. considering the nature of these methods, inductive coding schemes were used to interpret the data. i will conclude this section by discussing the limitations and benefits regarding such use of qualitative analyses. this piece is also known as our common future. the prime minister of norway at the time, gro harlem brundtland, and his commission, authored the report in . more information on this report can be found in the section entitled: sustainable development. the fifth chapter will present the findings and discussion. here, i will outline the perceived successes and failures of this project as outlined by myself, the uo community, as well as selected interviewees. in addition to securing a partnership with ocs, i single-handedly attained advertising and financial endorsements from the: student federation of the university of ottawa, ocs, food services, faculty of social sciences, faculty of common law, faculty of civil law, faculty of engineering, faculty of education, faculty of arts, and the telfer school of management. in addition to this, h ottawa was advertised by: uo central communications, uo’s faculty of science, the canadian broadcasting company (cbc), various magazines across the country, student newspapers at carleton university as well as uo, a handful of student groups on campus, and the new democratic party of canada. these discussions spanned over my three-year degree and will be used to show how uo embodies and enacts their commitments to sustainability. the final chapter will conclude and discuss next steps. in writing this thesis, i have been approached by various other public and private institutions who wish to adopt the h ottawa project. i foresee a bright future for this initiative, hoping that more institutions will ban single- use water bottles now that i have showed how we can offer an accessible alternative. although this particular project has not yet been carried out by other institutions, the thinking behind it is not revolutionary. i will argue that as an institution, the uo attempts to make its core goals compatible with a corporate understanding of environmental responsibility. this form of institutional branding frames uo as innovative, and targets consumers with a commitment to societal progression and ethics. this thesis aims to answer the following question: how does the uo comply with its commitments to sustainability, while also satisfying at the time of writing this thesis, i am working on a deal with the alumni association of uo, bluesfest, the museum of science and innovation, and a few local ottawa businesses. the expectations of its community, through the implementation of h ottawa? it is expected that research findings will not only be of use to the implementation of the h ottawa bottles, but may also act as a guide for sustainability-motivated projects in the future. chapter two: literature review introduction in writing this thesis, it has become evident that the values upheld by uo were very much reflected in the literature regarding sustainability (axelrod, ; barlow, ; brownlee, , ; elkington, ; feldman, ; gleick, ; m’gonigle, ; pocklington and tupper, ; szasz, ; young, ). it may be argued that this is indicative of the university's commitment to representing the community and society in which it operates. i will start this review by discussing broader issues surrounding water, as this inspired the context for my project. the literature on this topic is vast, and while all related, i will limit myself to ideas that are of direct relevance. i will then present the ideas of sustainability that are embodied by uo, as these were formative in the creation of the h ottawa project. this section will review the literature in which this definition of sustainability is reflected. from this, canadian universities will be discussed, specifically focusing on how they embody sustainability in ways similar to their corporate partners and the canadian government. it will then be argued that the consumer becomes a focal point when adopting sustainability initiatives. to conclude, i will review the importance of reputation to universities. here, i will argue that universities create their reputations in ways that attract future consumers, or students, that would fit in with their vision. through the marketing of h ottawa, it is evident that uo wants to be perceived as an avid supporter of sustainability and innovative ideas. this enforces the ideas that uo cares about being a sustainable, canadian university. water water has become a topic of intense interest, as were are beginning to see parts of the world experiencing shortages of clean freshwater. in their book entitled ethical water, sanford et al. ( , ix) assert that “ % of water on the planet is salty, leaving only % of it fresh enough to sustain terrestrial life. of that %…(much is) bound in ice or is inaccessible to use because it lies so deep beneath the world’s surface…(only) % of the earth’s total water sustains us today”. in canada, there is a common misconception that by virtue of our geography, we sit on the majority of this %. in contrast to this, “… canada’s share of the world’s renewable water supply is relatively modest… the two countries with the largest renewable water supplies are brazil with . % of the world’s renewable supply, and russia with %” (bakker, , ). scholars argue that in canada too, water scarcity may become a problem. it is important to protect this resource as water is essential to human life, and there is no substitute for it. our water supply is finite; globally, our governments must realize this and act in accordance. while many public institutions and corporations in canada have heeded the scarcity warning and joined the fight to protect our water, the canadian government has not. through the literature, this is referred to as taking the stance for water as a ‘human right’. in her book entitled blue future ( , - ), activist maude barlow discusses this position as choosing between, “…water being a need or a right. this is not simply a semantic decision, one cannot trade or sell a human right or deny it to someone on the basis of inability to pay… for profit water delivery systems encourage the concept of water as a need that can be filled by private as well as public operators. the right to water, however, denotes that water is a basic right, regardless of the ability to pay, and boosts the arguments that it should be delivered as a public service” in canada, water is not considered an official human right . this is because our government does not provide potable water, nor water sanitation services , to all canadians (barlow, ). according to barlow, the main reason that canada has not committed to establishing water as a human right, is that water systems and infrastructure in rural canada are not up to civilly prescribed sanitation standards, particularly in indigenous reserves. there have been serious issues concerning the provision of potable water in rural canada, which in extreme cases has resulted in fatalities. an example of this was our government’s failure to effectively operate water systems in walkerton, which resulted in the outbreak of disease from - (hrudey, ) . although the government took action to provide better access to potable water, rural canadians continue to suffer from intermittent water advisories. according to hrudey’s ( , np) report, safe drinking water policy for canada- turning hindsight into foresight, “… the management of drinking water and assurance of safety is not as universally effective as it can and should be, largely because of a management structure that is ill- suited to the task…the regulation of drinking water in canada is generally guided and managed in a fragmented, almost ad hoc, manner that leaves us vulnerable to future water-quality failures, most likely in smaller systems” the levels of canadian government are not organized in a way that is effective for managing the country’s water systems. according to canada’s water act , the federal, provincial, and municipal levels of governance are responsible for regulating different aspects of the overall system. it is argued that a lack of clarity in their expectations and responsibilities causes confusion, making it easy to neglect communities, often those in rural or economically for more on this, visit: http://unac.org/wp-content/uploads/ / /a-human-right-to-water.pdf water sanitation services include: the collection, transport, treatment and disposal of human excreta, and associated hygiene. to be clear, these water crises are not independent events. providing potable water to all canadians has always been an issue. according to pentland ( , ) “… clusters of acute illness on the scale of walkerton and north battleford have mercifully been rare, but a review by health canada shortly after those incidents determined that the country had experienced no fewer than outbreaks of illness traceable to contaminated water over the period from - - nearly one a month”. for more on this topic, see bakker ( ) and pentland et al. ( ) http://unac.org/wp-content/uploads/ / /a-human-right-to-water.pdf disadvantaged areas (pentland, ). if our levels of government are expected to become more cohesive and effective in governing water, the right to water must be accepted and supported by the majority of canadians. bottled water is not a solution, but rather a symptom of the problem regarding public water resources. it is alarming that urban canadians have become convinced that paying about x more for single-use containers of water, rather than use potable and readily available tap water, is an act of rationality (gleick, ; szasz, ). the need for alternate water sources came from a distrust of public water, resulting in the turn to privatized water and following this, a lack of publicly available potable water. gleick ( , ) argues that this can be seen through the displacement of water fountains: “water fountains used to be everywhere, but they have slowly disappeared as public water is increasingly pushed out in favour of private control and profit. water fountains have become an anachronism, or even a liability, a symbol of the days when…water wasn't available from every convenience store and corner concession stand. in our health-conscious society, we are afraid that public fountains, and our tap water in general, are sources of contamination and contagion” this is problematic as it follows the idea that private water is replacing public water, which runs contrary to making water a human right. banning bottled water is necessary to support public water, as it actively rejects privatizing water. i. bottled water bottled water became accessible to all economic classes in the s, and the industry has since enjoyed successful sales (gleick, ). as discussed, the failure of publicly sourced potable water was one such reason for the business of bottled water in the first place. following instances such as walkerton were private advertising campaigns, there to remind canadians that their tap water may not be safe. in her book entitled, contested water: the struggle against water privatization in the united states and in canada, robinson ( , ) asserts, “since the s, public water systems have been under attack by proponents of market- based models of governance, who argue that ‘governments are less productive, efficient, and effective than markets’…private sector involvement in water systems has been hailed as a means of correcting those failures” bottled water companies preyed on nationwide anxieties relating to public water systems, by promoting their product at its expense. these companies used marketing tactics to present their product as that which saved the people from public water sources. municipal governments in canada have made several efforts to reverse the damage done to the collective government reputation, regarding the provision of clean, public water. a recent example comes from ottawa, where the city recommends that we replace “small plastic bottles of water” with “tap water, drinking glasses, and reusable water bottles” (city of ottawa, ). the city of ottawa’s website informs their public of how water is filtered, where it comes from, and why our municipally sourced water is safe for consumption. despite this, particularly urban canadians seem to consistently opt for bottled water. according to steven hrudey’s report, safe drinking water policy for canada- turning hindsight into foresight,“… throughout much of developed, urbanized canada, public drinking water generally poses a negligible health risk to consumers” ( , ). compared to other affluent countries around the world, canadians are among the least likely to drink bottled water; those who do, tend to live in cities (whan et al., ). this is problematic as the demographic supporting private companies already has reasonable access to potable water. so, why have consumers chosen to replace the tap with bottled water? rbc’s canadian water attitudes study (whan et al., ) found that the most avid consumers of bottled water make this choice: for reasons of convenience and portability ( %); because water as healthier than soda or juice ( %); and for a fear of the tap ( %) (gleick, ; queiroz et al., ). when considering the urbanite lifestyle, the convenience argument seems reasonable. the ceo of nestlé water’s north american branch defends her product, stating “we are a / on-the-go society who wants convenience in our beverage choices” (gleick, , ). in regards to the taste argument, studies have shown that when performing taste-tests, consumers believed that they preferred bottled water, but unknowingly chose tap water most times (gleick, , ). here, it may be argued that consumers have been led to believe that publicly sourced water is of a lesser quality than what we can pay for. we live in a society where we “see danger everywhere… we suspect that the water that flows from the tap is contaminated with chemicals that can make us ill… contaminants can be colourless, tasteless, odourless, invisible to the senses, and that fact increases the feeling of vulnerability” (young, , ). it is of interest that most people drink bottled water for convenience and portability, as this is the easiest part to fix. in providing city-dwellers with easily accessible multi-use bottles, we may encourage them to drink public water, and find that there is nothing to fear. according to szasz, some canadians are “trying to barricade themselves, individually, from toxic threat, trying to shield themselves from it. act jointly with others? try to change things? make history? no, no. i’ll deal with it individually. i’ll just shop my way out of trouble.” ( , ). this argument applies to how canadians who opt for bottled water feel about publicly sourced water. these consumers believe that what is provided to them through their taps is suspect, while what they earn or pay for, is healthy. purchasing reusable water receptacles is a behaviour of people who do not fear the tap; in regulating our public water sources and informing our communities of this, we can make drinking public water a trend. ii. privatization of water the privatization of water is a major problem identified by academics in this field. put simply, when corporations bottle water, the resource itself becomes their property which they have the right to sell for profit. in his book entitled water, feldman ( , - ) argues that “privatization may transform water into a commodity that provides material gain of profit-making enterprises, but fails to regard freshwater access a human need or right… privatization discourages water conservation and encourages higher consumption so as to maximize profit… the dramatic growth in privatization has prompted questions regarding political accountability, economic fairness, and the willingness of vendors to vigilantly prioritize public health and other community concerns above handsome returns on investment” here, private water companies are competing with public water distribution. this is problematic, as the logic of privatization may degrade investment and maintenance of public infrastructures, creating potential problems in the future. here, market services are presumed to first supplement and then gradually replace public services. activists portray the privatization of water as negative because it fosters political mistrust, and monetizes a resource that should be readily accessible, regardless of economic status. in her book blue future, maude barlow asserts, “…many countries are introducing water markets and water trading, whereby water licenses- often owned by private companies or industrial agribusiness- are allowed to be hoarded, bought, sold, and traded, sometimes on the international open market, to those that can afford to buy it. in all of these cases, water becomes the private property of those with the means to buy it and increasingly denied to those without” ( , ) barlow problematizes the privatization of water. here, she argues that putting a price tag on this essential resource relegates public responsibility of restoring water systems. in order to distribute potable water worldwide, governments must maintain jurisdiction and formally accept this resource as a human right. the literature argues that support for privatized water has made providing potable water an option for governments, rather than a priority. this may result in a lack of effort to maintain public water infrastructure. from a macro-lens, this shows mistrust towards public services more generally. in his book entitled shopping our way to safety, szasz argues that “most people drink bottled water…(because) they suspect the quality (of publicly serviced water)…rather than do something politically or collectively to improve the public water supply, they try, individually, to assure themselves a supply of water that is safer to drink” ( , ). according to szasz, this mentality is problematic as it exhibits a lack of confidence in authorities who are supposed to be protecting us. when consumers buy their way out of trouble, money is diverted from public to private services; this deters prioritizing the maintenance of public water systems cross-nationally. this shift disproportionately impacts those without the means to purchase bottled water, who are those living in communities that already have shoddy access to potable water . iii. environmental impact of single-use plastic water bottles the environmental impact caused by single-use water bottles is a huge concern throughout the literature. water bottles are usually produced from polyethylene terephthalate (hereafter, pet) because it is durable, lightweight and see-through (miller et al., ). however, pet has negative environmental implications. first, the manufacturing of pet bottles consumes about . kilograms of freshwater, for each kilogram of pet produced (feldman, , ). in addition to this, the pet bottle has proven to be environmentally damaging because it is unlikely to be recycled. according to queiroz in her study entitled news about tap and bottled water: can this influence people’s choices?, “… million bottles are discarded these areas are much closer than we think! residents of wakefield, qc have experienced water bans in the past year. this is only km away from the city with the best water in canada, downtown ottawa. in landfills every day in canada and only % are recycled” ( , ). this is significant as pet is not biodegradable; when it eventually leaches into the soil it expends harmful chemicals. when plastics are recycled, they are actually ‘downcycled’. this means that they are used to make a lower-quality form of plastic. most plastics cannot be recycled more than once, sending the remainder to landfill. moreover, the plastics that are of a quality that can be recycled are not processed in canada, but shipped to other countries. gleick ( , ) builds on this, stating “most of our recycled bottles end up in giant bundles stuffed onto contained ships headed for asia. the chinese find it cheaper to buy our plastic garbage, ship it across the entire pacific ocean, and use it to make stuff to ship back here, than to make virgin pet from petroleum”. here, the recycling of plastics is unsustainable as the process of producing the plastics and recycling them expend more energy than simply using other materials. in all, the lifecycle of single-use water bottles emit greenhouse gases, which are known to be harmful to us, and to our physical environment. iv. water in canada in order to better distribute potable water in canada, policies must be reformed and enforced. in their book entitled down the drain: how we are failing to protect our water resources, pentland et al. ( , ) argue that although policies to protect water do exist, they are not prioritized above economic advantage: …economic thinking has been deeply influenced by market fundamentalism…canada’s leaders have become increasingly passive in the face of threats to the ecological assets that constitute our natural security…sometime between the early s and today, the supply-demand balance between human consumption of earth’s resources and the planet’s biophysical productive capacity (nature) tipped from a condition of nature surplus to one of nature scarcity here, it is argued that we have prioritized economic benefit over our physical environment through exploiting our natural resources. according to barlow ( , ), if the canadian government continues to treat water as an exploitable resource, “no place on earth will be free from the consequences of the water crisis…even if we start to slow the damage we have created by challenging the growth imperative and (enacting) water conservation practices and source- water protection”. it is essential that we govern water in a way that is sustainable, to ensure the preservation of our natural environment and future generations. if we continue to define wealth through the exploitation of our natural resources, there will be consequences of scarcity. canadian citizens have grown up in a capitalist society; trained to buy, consume, and throw away. this culture of consumption has been fostered by corporations and political leaders who seem to make decisions as if natural resources were infinite, as if unlimited growth were possible (barlow, ; szasz, ). is there a way to permit economic growth, while maintaining our culture and physical environment? sustainability ideas around sustainability were formalized through the brundtland report of . also known as our common future, its main accomplishment “…was to combine systematically, a number of issues that have often been treated in isolation, or at least as competitors: development, global environmental issues, population, peace and security, and social justice” (dryzek, , ). during the time of its publication, environmental issues were gaining prominence worldwide (young, ). despite the concern these generated, governments were reluctant to impose environmental regulations as they feared this would hinder economic growth (dryzek, ). young ( , ) argues, “the concept of sustainability contains an implicit endorsement of growth- that economic expansion is acceptable as long as it does not worsen environmental conditions over the long term…by breaking the economy vs. environment logjam, the notion of sustainability freed politicians and corporations to embrace moderate forms of environmentalism, while also freeing environmental activists to embrace more environmentally responsible policies and companies” the brundtland report had a significant impact in this context, as it legitimized the idea that environmental integrity and economic growth may coexist; we could save the planet without having to drastically change our economic patterns. here, sustainability is defined as a compromise between protecting the natural environment, our culture, and economic growth. to this point, there is no consensus on the exact meaning of sustainability, academic or otherwise. as outlined in the brundtland report, “no single blueprint of sustainability will be found, as economic and social systems and ecological conditions differ widely among countries.” ( , ). the literature argues that this can be beneficial, as sustainability becomes a living discourse, that grows based on its use in various contexts (dryzek, ). put more clearly, sustainability becomes defined within the context of the community enacting it. considering its broad applicability, sustainability became difficult to reject. authors argue that wealthier nations generally act more sustainably as they have the necessities of life, as well as accessible funds and technology to pursue innovative practices (milfont et al., ). altogether, sustainability has gained global respect and presence. i. sustainable development the most widely used definition of sustainable development was presented in the brundtland report ( , ): “humanity has the ability to make development sustainable, to ensure that it meets the needs of the present without compromising the ability of future generations to meet their own needs. the concept of sustainable development does imply limits…imposed by the present state of technology and social organization on environmental resources and by the ability of the biosphere to absorb the effects of human activities” sustainable development contends that we use technology and the direction of our society to advance the physical environment. here, it is not expected that society change its capitalistic economy, but manage it. according to milfont et al. ( , ), we are to “use goods and services that respond to basic needs and bring a better quality of life, while minimizing the use of natural resources, toxic materials and emissions of waste and pollutants over the life-cycle”. sustainable development became acceptable to institutions, as it fostered growth and development while being perceived as responsible in the public eye (young, a). considering this, rhetoric surrounding sustainable development has become written into policy and widely employed by various institutions. universities adopt sustainable development as it embodies ideas of innovation and social good; doing things better than we have in the past. scholars argue that corporations have been instrumental in popularizing and legitimating sustainable development. the literature argues that canadian consumers have come to expect corporations to act in environmentally responsible ways, and this plays a part in which company although parts of our common future were changed in , this definition remained unchanged. they decide to support with their purchasing power (akehurst, ). considering that corporations respond to the wants and needs of society, this shift has inspired many companies to adopt sustainable ways of producing. in his book entitled cannibals with forks: the triple bottom line of the twenty-first century, elkington ( , ) asserts that, “…politicians rarely have the vision, let along the courage, to steer their government… in this new direction. as a result, it is inevitable that a growing portion of the sustainability agenda will land, by default, in the lap of business and of what is increasingly called ‘civil society’: all the institutions and public activities which create the social contract within which markets evolve and business is done” in this system, corporations that do not adapt and innovate will fail. considering the position of the consumer, corporations differentiate themselves based on sustainable practices. this is positive as the environment is a focus, but it also means that corporations are actively creating how we define sustainable development. the ambiguity of this concept allows it to develop in unique ways. in his article entitled sustainable development in a post-brundtland world, sneddon ( , ) argues that, “sustainability may yet be possible if… a plurality of approaches to, and perspectives on sustainability [are embraced], multiple interpretations and practices associated with an evolving concept of ‘development’ [are accepted] and support a further opening up of local-to-global public spaces to debate and enact a politics of sustainability” here, it is argued that we should bring people from different backgrounds to actively develop a multidimensional and informed understanding of sustainability. to create a rigid framework for sustainability, when we are unprepared to do so, may deter the constant evolution that we are seeing through innovative approaches to sustainable development. here, the lack of a definition may actually inspire progress. the sustainable development movement has pressured institutions to be aware of environmental problems, it did not outline how it was to be done. as a result of this, corporations became highly active in developing ideas of implementation that benefited their stakeholders while also sustaining the natural environment (portney, ) . one way this was done, was through the advocation of the ‘triple bottom line’ approach to sustainable development (portney, , ). the tenets presented in this approach are called the ‘three pillars’ of sustainability, and consist of environment, society, and economics (hiedanpaa, , ). first, the pillars must be explained: “ ) (environment:) care for the natural environment so that it remains intact, ) social consciousness that results in actions that build and strengthen the social fibre of our communities, and ) economic viability oriented toward the long term that generates benefits for current and future generations” (ott, , ) for sustainable development, these tenets inspire and guide macro processes. the problem here, is that this definition is idealistic, as there is no prescribed way to balance these tenets. when it comes to sustainable development, it is defined by the entities who claim it. the ‘triple bottom line’ approach was used in the conceptualization of h ottawa. in corporate settings, including universities, reporting sustainability is done on a voluntary basis. businesses find social value in participating, and most of the big corporations “report at least once a year on what they have done to reduce the direct environmental damages caused by their products, services, and operations, and indirectly by damages caused by their supply chains” (portney, , ). reporting under this framework draws attention to some of the environmental harms being inflicted through the production-consumption backbone of our economy, as well as speaks to the efforts being done to lessen such harm. in all, sustainable development has put the spotlight on corporations, and how they are impacting our physical environment, for economic benefit and the maintenance of our consumptive culture. here, stakeholders are defined as “people who can affect or are affected by a company’s devisions and actions. they are employees, customers, business partners, investors, regulators, and often the community in which the company operates. these are the people who matter to a company’s commercial success” (singer, , ). universities in canada canada has some of the most highly ranked universities in the world (macleans, ). considering this, ~ . million local and international students were enrolled in canadian universities in (universities canada, ). for the purpose of this research, it is important to note that canadian universities have a direct influence on many peoples’ lives. the literature argues that the impact of universities is twofold. according to byron ( , ) universities are sites where “pedagogical relationships, which include the initiation into a discipline of learning, the passing on of skills, the sharing of ways of seeing and ways to thinking [develop]…[it also] governs the student’s induction into participation in the life of public institution”. universities are respected institutions, thus ideas produced here are accepted, or at least respected, by the greater society. in this way, universities not only teach and evaluate one’s understanding of curriculum, but also play an active role in developing canadian citizens. universities have a greater responsibility to sustainability and innovation than do other institutions. these spaces are meant to be breeding grounds for ideas to be shared, and to inspire discussion. winter et al. ( , ) argue that ideas of sustainability “coalesces around a key point: transforming people’s perspectives, values and actions, in favour of more sustainable ways of working and living”. here, teaching sustainability in universities gives students information, but also a space to discuss with likeminded people and create new ideas. this process helps to develop the next generation of responsible and informed citizens. the problem with teaching sustainability in canadian universities, is that ideas surrounding it are still unclear. in canada, representatives from various provincial governments have agreed on the use of curriculum to disseminate ideas of sustainability. however, there were macleans magazine has a well trusted ranking system for canadian universities; see: dowling et al. in singer ( ) for a detailed review regarding the importance of accepted media on reputation. significant challenges when it came to entrenching these ideas into coursework (hopkins, ). the problem here, is that sustainability is largely understood as an environmental exercise, making it difficult to isolate from environmental education. sustainability has become a priority for higher education institutions, which gives us hope for future programs (fonseca, ; hopkins, ). while sustainability courses maintain an emphasis on environmental protections, many are incorporating tenets of social good and economic benefit. another way that universities can exhibit their understanding and commitments to sustainability, is through supporting initiatives. students are very active in this field considering that all can relate to sustainability, regardless of our personal characteristics or backgrounds. here, universities may financially and socially support sustainability champions on their own campuses. in doing this, universities “(e)nhance the links between formal and informal curriculum, providing opportunities to align learning in both spheres, and help strengthen sustainability messages for all students” (winter et al., , ). acts such as these not only benefit the university, but encourage students to be solution-oriented and outspoken about their ideas. the outcome of this is presenting sustainability as less elusive and more inclusive of all students. literature argues that university students and graduates are increasingly concerned with their institution’s commitment to the tenets of sustainability (freestone, ). the literature suggests that universities make good pilot sites for the implementation and testing of various strategies, as they are places that foster ideas that may translate into the larger society. m’gongile ( , - ) argues that, “the sustainability movement is concerned about the most pressing issues of its time. but it also has a new role for the university- to be not just a site for making protests, but a the university of british columbia, known for having the best sustainability department in the country, has established many courses that focus on the ‘triple bottom line’ of sustainability. see: https://sustain.ubc.ca/courses-teaching/courses https://sustain.ubc.ca/courses-teaching/courses place for creating precedents…changing the world by creating a sustainable university is admittedly a strange idea…(until one takes into account that) universities are located locally, but networked globally…they are actively connected to the past, but also shape the future” according to this view, the implementation of sustainability on campus has value for teaching the next generation about difficult problems associated with sustainability, and for inspiring them to find solutions. critics argue that sustainability-based ideas disseminated from universities cloak economic and political interests. in their book entitled no place to learn, pocklington and tupper ( , - ) assert, “the government of canada became committed to the support of university research…this role was compatible with its broader interests in national economic development…government funding provided canadian universities with financial stability. it also guaranteed that the academy’s priorities would be shaped by democratic politics and economic needs” here, it becomes clear that our federal government has a vested interest in canadian universities. while this provides these institutions of higher education with financial stability, it also closely aligns political interests. this is positive in many ways, but also runs the risk of discouraging change. if university research is focused on wants and needs of the federal government, students do not have as much freedom to discover alternative realities. academics against the corporatization of universities argue that this influence may result in a cyclical formation of ideas. while provincial governments provide the largest financial contributions to universities, outstanding costs are attributed to students. this is important as those who provide funding for universities have an influence on what is taught on its grounds (axelrod, ; m’gonigle et al., ; renke, ). axelrod ( , ) explains government funding has not been able to keep up with the influx of demand for university education; he argues that, “severe financial pressures (have been placed) on canadian universities. constrained by accelerating deficits and a diminishing tolerance for tax increases, government funding has not kept pace with the growing demand for university education…tuition-based revenues rose from % to %. in - , students paid an average annual tuition of $ compared to $ in - ” here, it is clear that costs for maintaining universities are being placed on students. considering their financial stake, canadian universities increasingly aim to fulfil the wants and needs of students to improve retention rates (university of ottawa, ). the question now is, why do young adults choose to go to university? in short, it is to get a job (axelrod, ; brownlee, ). of course, this has implications regarding what the university teaches. m’gonigle ( , - ) argues that this is problematic, as we are taking away the creativity that universities once inspired. to further illuminate this point, m’gonigle ( , ) notes that “…canadian universities in - performed research and development work (that totalled) over % of the natural resources research and development”. here, it is argued that universities, and university students by extension, developed a significant percentage of the country’s research and development. considering this, it may be argued that the university encourages its students, and provides an environment for them, to carry out research that is in demand by the federal government. i. the corporate university it is argued that canadian universities are being increasingly corporatized. the corporatization of the university is defined as, “the process and resulting outcomes of the ascendance of business interests, values, and models in the university system… universities have always functioned to serve the practical interests of businesses and their other stakeholders; however, this utilitarian approach in and of itself does not constitute corporatization… an institution that is characterized by processes, decisional criteria, expectations, organizational culture, and operating practices that are taken from, and have their origins in, the modern business corporation. it is characterized by the entry of the university into marketplace relationships and by the use of market strategies in university decision making” (brownlee, , ) while universities continue to teach and perform research, the context in which this takes place has changed. in short, canadian universities are operating more like businesses. the literature puts forth positive and negative results of this shift that will be discussed through this section. the main problem with corporatization, is that it prioritizes business interests above all else. jamie brownlee’s book entitled, academia, inc: how corporatization is transforming canadian universities argues that, “critiques of educational restructuring morphed into a wider critique of the capitalist system… students and other activists are locating educational concerns within the context of declining public programs and services, austerity agendas, attacks on worker rights, structural unemployment, environmental destruction and the expansion of corporate power… under corporatization, the public mission of the university- which has often emphasized democratic goals and services to the broader community- is being reduced in favour of private and commercial interests ” ( , ) the literature expands on this, arguing that research inspired by private sector needs may be framed in a way that benefits businesses rather than stating the facts. this is problematic as peer reviewed research would be widely respected, as these are trusted social institutions. the issue becomes the integrity of the university itself and the possible degradation of its unique position in society. universities are meant to be sites of social change, where students can freely create and explore new ideas. in the past years, universities have been spaces for social movements such as civil rights in the s, the environmental movement in the s, and social justice movements more recently (brownlee, , ). corporatizing the university is framed in contrast to this goal. to give an example of this, uo stopped a burmese activist from speaking on campus because what they had to say would negatively impact the desmarais family business. jamie brownlee ( , ) argues that, “in addition to policing teachers and students to protect their own brands, administrators also prioritize shielding corporate sponsors from criticism. it was this concern that motivated the university of ottawa to prevent a prominent burmese human rights activist from speaking on campus in . the subject of the activist’s talk was the unethical burmese business activities of total sa, a french oil company whose board members included the wealthy desmarais family, one of the university’s largest benefactors… university officials appeared to be aware that they were violating elementary codes of academic freedom in the service of their corporate sponsor; in an email to the university president gilles patry, one vice president noted that preventing the talk ‘flies in the face of many principles we hold dear in the university world’” opponents of corporatization argue that prioritizing corporate interests over academic freedom, is one of the greatest challenges facing the university. it is argued that these institutions have the potential to confront global problems, but under this framework are unable to be transparent with, and educate, their community (brownlee, , ). here, the values of universities and corporations are framed as oppositional. one of the reasons that universities have decided to corporatize, is due to significant financial pressures that have forced them to rely on external funding. in ontario, universities receive the second lowest government funding in canada, increasing tuition fees and providing a greater need for external funding (brownlee, , ). according to axelrod ( , ), “…two decades before the massive fiscal ‘meltdown’ of , has imposed severe financial pressures on canadian universities. constrained by accelerating deficits and a diminishing tolerance for tax increases, government funding has not kept pace with the growing demand for university education…tuition based revenues rose from % to % (between - )” as previously mentioned, provincial governments do maintain a dominant role in funding canadian universities, but have allowed more funding opportunities outside of the public realm since the s. the problem here, is that those who fund the university often have vested interest, which has assisted in the corporatization of universities (brownlee, , ). this shift can be subtle, such as research grants being aimed towards corporate needs, or more obvious, as buildings being named after big businesses. the kind of work that universities are engaged with has changed due to the introduction of these new rationalities. universities are expected to produce highly skilled students for the purpose of initiating them into an ever-changing global economy, as well as producing innovations that will contribute to economic growth. in short, there is a pressure on universities to reproduce for the benefit of governments and corporations. according to brownlee ( , ), “university presidents have been recast as ‘ceo’s’, students as ‘consumers’, graduates as ‘products’ and professors as ‘service providers’… profit has become a leading goal of academic inquiry and a guiding principal for deciding what products and services to offer. decisions about course offerings, research funding and hiring and enrolment practices are assessed less in terms of academic criteria, and more on whether they represent good business decisions” using corporate rationalities changes the perceived educational goals of universities. for instance, universities will cut back programs that are not profitable or that seek to have limited connection with labour market realities. research conducted in canadian universities elicits a close connection between corporations, universities, and the government. pocklington and tupper ( , - ) assert, “canadian universities became closely linked with governments…a well-educated workforce was a productive one, and an expanding industrial economy required a solid research base. the government of canada became committed to the support of university research…this role was compatible with its broader interests in national economic development…government funding provided canadian universities with financial stability. it also guaranteed that the academy’s priorities would be shaped by democratic politics and economic needs” while universities have done this work for quite some time, the change here is the incorporation of logic and worldview of the corporate world into the university. considering that governments and corporations are funding universities, it may be argued that their interests are reproduced. it is important to note here that the canadian government is not a leader in sustainability, thus maintaining its current ideas may disservice the natural environment. for more on this, refer to bakker, karen (eds.) ( ). eau canada: the future of canada’s water. vancouver: ubc press. the corporatization of universities has positive as well as negative ramifications. while the interests of corporations and governments may be a focus in certain aspects, the university does maintain agency. universities remain the breeding ground for current and future leaders, innovators, and problem solvers, who have the potential in these institutions to offer solutions to global challenges though their research (m’gonigle, ). through corporatization, students gain the opportunity to present their ideas, and are encouraged to apply their research, to real- world issues presented by governments and big businesses. the corporatization of universities provides money, in addition to social resources. according to fonseca et al. ( , ), “canada’s higher education sector is a growing $ billion enterprise that employs more than people and services about . million students… since at least the early s, canadian universities have been incorporating sustainability into their fabrics. there has been a significant growth in the number of environmental management systems, environmental declarations, sustainability offices, sustainability assessments, green buildings, and student-led initiatives at universities across canada” corporate development is ultimately guided by the corporation’s own internal decision making processes, but these operate within the expectations of their consumers. for canadian universities, to attract the next generation of students, it is important to engage in sustainability and innovation. while corporatization is framed negatively throughout the literature, it is important to recall that most students are going to university with the end goal of solidifying employment. considering this, it may be argued that corporatization actually fits well with the goals and desires of modern students. conclusion of literature review my research falls within the crux of the literature against privatized water, and that pertaining to sustainable development. at uo, the sale of bottled water was banned from campus to encourage students to drink publicly sourced water. uo’s students accepted the ban, but maintained the desire for portable water. here, uo acted as a business by implementing a product that was acceptable to their identity, while also fulfilling the wants and needs of the student-consumer (brownlee, ). in the context of canadian universities, sustainability is defined in ways that determine how such initiatives are pursued on campuses. chapter : conceptual and theoretical frameworks conceptual frameworks this research is guided by the conceptual frameworks of ethical consumption, and organizational reputation. the literature provides a foundation for understanding why h ottawa would appeal to students and to university officials, as it provides a convenient, sustainable, and cheap solution to portable water. here, the university is interested in its reputation and trying to enhance it through its endorsement of this initiative. through supporting h ottawa, the university provides its community with a ‘feel good’ piece that is also practical. h ottawa is an easy story to identify to for many uo community members who have not had access to portable water for the past eight years; this story may attract positive attention from their past, current, and future clientele. ethical consumption one way we show our commitment to sustainability is through our buying power. students may be referred to as ethical consumers, meaning they are “concerned with the ‘people’ element of consumerism… (they) care whether a corporation… worries about product transportation distances and other concerns… being an ethical consumer means buying products which are not harmful to the environment and society” (harrison et al., and strong, in freestone, , - ). the university conceptualizes students as ethical consumers. in operating as a corporation, universities reflect the values that they perceive as important to, and embodied by, their clientele: students. here, it pays to embody ideas of sustainability. the ethical consumption movement has mirrored the interest towards a more sustainable society. the literature argues that “there has been a documented shift in consumer behaviours, as most canadians expect institutions to be socially responsible… this has forced companies to shift their standards and practices… a company’s brand is an extension of its attitudes, qualities, beliefs, and the relationship it has with its customers” (trudel, , ). increasingly, canadians are questioning where their products come from, how they are made, and if they are sustainable. corporations are being held responsible for their actions, and expected to consistently aim to be more sustainable. uo’s brand experiences a similar shift, appealing to ethical consumers. a principal component of this framework, is that consumption is motivated by identity (pinto et al., ). in canada’s capitalist economy, there are many choices to be made when buying a product. making these decisions are “motivated…by the need of social groups to achieve distinction and recognized status. consumption is a place of differentiation and distinction between groups…products are often used as status symbols” (queiroz, , ). purchasing certain goods not only act as social markers to one’s peers who share the same symbolic language, but also to the self. according to lades ( , ), “when an individual consumes a good with an identity-relevant symbolic meaning that is congruent with the individual’s ideal self-image, the individual can move closer to her ideal self-image and thereby at least temporarily satisfy her need for self-enhancement”. the h ottawa bottle was designed for ethical consumers. as can be seen through appendix , the story behind the bottle is physically imprinted onto it as a stencilled wrap. this story incorporates ideals presented through ethical consumption; it communicates how the bottle was conceptualized with ethical, social, and environmental tenets in mind. through buying this bottle, students buy the story and become a part of it. attaching this information to the bottle assumes that students care about why this bottle is different from generic single-use water bottles. considering this, the h ottawa bottle becomes a symbol of social responsibility . although students may have the intention of being ethical consumers, there are barriers that hinder these behaviours. in their article entitled mind the gap: why do people act environmentally and what are the barriers to pro-environmental behaviour?, kollmuss and agyeman ( , ) argue that there are three main barriers to ethical consumerism : individuality, responsibility and practicality. the authors define individuality as “barriers lying within the person, having to do with attitude and temperament…environmental concern is outweighed by other conflicting attitudes” (kollmuss et al., , ). here, individuals may prioritize characteristics such as cost or style, over the environment. the barrier of responsibility, is defined as “people who do not act pro-environmentally feel that they cannot influence the situation or should not have to take the responsibility for it…this community may have a lack of trust in the institution” (kollmuss et al., , ). in general, people do not always have the confidence that they can influence others to think as they do. for students, it is also true that they do not believe their actions can produce a relevant change; this thinking however, hinders progress. finally, practicality is defined as the “social and institutional constraints that prevent people from acting pro-environmentally regardless of their attitudes or intentions; lack of time, money, information” ( , ). i will argue that the h ottawa project enables ethical this will be expanded in the discussion and findings chapter. although some discourses separate consumerism from pro-environmental behaviour, the authors introduced in this paper see ethical consumerism as consistent with pro-environmental behaviour consumerism, as it provides the student body with an economically practical, and responsible alternative to bottled water, which will be further discussed in a later section. barriers to ethical consumerism may be internalized in ways that discourage students from acting sustainably altogether. in his study of undergraduate students at simon fraser university in british columbia, trudel ( ) found that students believed they had to be wealthy to be ethical consumers. in conjunction with the idea that, “personal identity is linked to consumption… (and) consumption has today become our primary means of self-definition, leading us to attempt to satisfy with material things what are essentially social, psychological, and spiritual needs”, these barriers become problematic (soron, , ). here, it is important to offer ‘sustainability’ through retail. producing sustainability initiatives that are financially exclusionary, deter the younger generation from adopting related practices into their lives. according to the ethical consumerism framework, consumers buy things that make them feel good about themselves. szasz ( , ), argues that “consuming occupies much of our time, attention, enthusiasm- passion, even”. this quotation asserts that we put a lot of thought into our consumption habits, to the point of consumerism becoming a passion. one’s buying power can be “traced back to self-interest… feeling good (or avoiding guilt) by doing good” (freestone, , ). in canada, people care about their buying decisions as they are central to their lives and identities. using sustainable products in lieu of others not only reduces ones’ environmental impact in that small way, but makes them feel good about the self-image that they actively portray for themselves, and to their peers. this ‘feel-good’ piece encourages consumers to adopt similar lifestyle choices, resulting in a more sustainable citizen. if we are to create a more sustainable world, we must facilitate these behaviours by providing affordable and accessible, pro-sustainability, identity markers. uo aims to attract ethical consumers as it is through this lens that they see their students. considering this, the launch of h ottawa was guided by uo staff, to fulfil the requirements outlined above. this is beneficial for uo, as providing a service that enables ethical consumption attracts more business and good press. it is argued, “people that have favourable attitudes to carrying out pro-environmental behaviour and that perceive the situation to facilitate such behaviour are the most likely to carry out such behaviour… people with unfavourable attitudes towards such behaviour and who perceive the physical environment as inhibitory is the group that is least likely to carry out such behaviour” (corraliza, , ). attracting all monetary backgrounds to consume ethically will help to produce a more sustainable world. in the university setting these ideas are even more important, as students have less disposable income and are actively developing their identities. exclusion fosters the idea that actions of individuals without power cannot create change, inclusion inspires students to feel as if they can be part of a bigger movement. reputation institutions are concerned with the ways in which they are perceived by their ‘clientele’ , as this has ramifications for their success. for the purpose of this thesis, the conceptual framework of organizational reputation (hereafter, or) presented in the article entitled organizational reputation: a review, will be used. here, de lange et al. ( , ) argue that there is no conclusive definition for or, but describe it as “the way key external stakeholder groups or other interested parties actually conceptualize the organization…reputation can be enhanced by corporate marketing and branding campaigns …by the firm’s affiliation with prominent partners…and by publicity by influential third parties and media outlets…when an organization is well namely, future students success here may be defined as becoming an elite university, as is outlined through ranking systems. this is important to universities as it increases admission, and attracts prominent academics. in canada, the media is responsible for ranking universities and giving them this status; maclean’s is a good example (cole, ; dowling et al. in singer, ). known, observers have a strong sense of what is central and distinctive about its attributes, especially relative to other firms” for the purpose of uo, reputation is important as it stimulates growth. for example, an institution’s reputation and image have a great impact on whether or not students decide to stay for advanced studies. this is important, as these students are responsible for producing the research which differentiates universities (steiner, ). growth is also fostered through gaining high quality students and professors from different universities, which is resultant from how the institution is perceived. as a concept, or is divided into three basic components: visibility, strategic character, and favourability (de lange et al., ). first, i will define these concepts in relation to the conceptualization of h ottawa. the visibility component is the idea that an organization’s reputation is simply being known. more specifically, visibility can be understood as a broad “awareness of the firm… perceivers have a more distinctive perceptual representation of the firm, irrespective of judgement or evaluation” (de lange et al., , ). through being one of few top universities in canada, uo is well known. one signifier of this is the fact that uo is second home to about students, one of the highest university populations in the country (university of ottawa, ). according to macleans ranking system, uo also enjoys the reputation of being one of the top universities in canada . this component to reputation is important to the h ottawa project, as it offers validation to my project through a uo endorsement. it is also worth noting that sustainability initiatives are known to effectively drive brand value (singer, , ). according to ott ( , ), “…the top universities have strongly embraced sustainability as a concept… sustainability is is an evolving concept, and it has been for more on this, visit: http://www.macleans.ca/education/university-rankings/top-reputation- -university-of-toronto/ defined many ways over the years. organizations should be clear in their communication about what sustainability means to them and how they define it”. universities embrace ideas of sustainability and define it for their own institutions, through supporting student sustainability projects, and actively engaging key stakeholders in such efforts (ott, , ). considering their goal of attracting students, this approach is valid. future students likely hold similar values to current students, and would appreciate the university’s commitment to hearing the student voice. the strategic character component of organizational reputation refers to being known for something. here, authors argue that “reputation entails perceptions that the firm has particular attribute of interest or value to the perceiver” (de lange, , ). in , uo committed itself to self-defined ideas of sustainability through its destination document (university of ottawa, ). since then, the university has taken steps towards this goal through investing their resources into initiatives such as banning the sale of bottled water, participating in sustainability rankings, retrofitting old buildings to reach leed silver requirements, and the like (office of campus sustainability, ). through investing in strategic sustainability initiatives, uo becomes viewed as a sustainable university. favourability, within the organizational reputation framework, is understood as a generalized idea of how people feel about the firm. the ‘favourability’ component is more specifically defined as, “perceivers assess the firm overall as more or less good and attractive…. measurements of reputation in the generalized favourability dimension are highly dependent upon which audience…decides to investigate” (de lange, , ). considering that uo views its community as ethical consumers, supporting grassroots sustainability initiatives on uo did not directly invest money to ban bottled water, but they did commit to losing money. the university did pay to ban bottled water through investing money into retrofitting existing water fountains on campus as well as installing new fountains and water refill stations to make the ban successful. campus may gain their favour. uo must be particular when bringing ideas into its reputation, as these must be considerate of the ideals of its collective community. the favourability component also incorporates the level of esteem to which people hold the institution in question (de lange, ). here, it becomes important that universities augment their reputations through their quality of research (axelrod, ; ott, ). research and innovation in the field of sustainability is important to a university’s image, as it has the potential to rewrite the way things are currently done. when successful, innovations derived from ideals of sustainability “significantly lower the impact of human activities on the natural environment, and may be viewed in the future as ‘innovations that did not exist yesterday, but the world cannot live without today and in the future’” (varadarajan, , ). successes such as these create hope for the future by providing solutions to socially relevant problems. considering the novelty of h ottawa, and the fact that it is the outcome of research, the bottle becomes a tangible example of how uo students produce sustainable innovation. in canada, having the reputation of a good research university is synonymous with being a ‘high status’ institution (axelrod, ; ott, ). through the endorsement of this project, the uo was able to promote its commitment to sustainability research, putting a spotlight on their unique programs. through the vehicle of the defy the conventional campaign, h ottawa was pitched to external donors and future students, showing an acceptance of this project into their image. the trouble with marketing an initiative as sustainable, is that while it can help augment a firm’s reputation, being accused of greenwashing has an opposite effect. by definition, greenwashing is “intentionally misleading or deceiving consumers with false claims about a the uo offers the ‘living laboratory’ program where students study sustainable development from an academic lens, but also requires them to volunteer in the conception of sustainability initiatives. for more information, see the report on sustainable development at the university of ottawa ( ). firm’s environmental practices and impact” (nyilasy, , ). considering that sustainability is an ideal, it is by definition unachievable. in presenting an initiative as ‘sustainable’, a firm must be cautious to not present themselves as having perfectly achieved balanced sustainability. the authors go on to argue that “‘greenwashing’ is not merely an ethical issue… consumer perceptions of greenwashing are real and their impact on brand attitudes and purchase intent is significant” (nyilasy, , ). here, it is the perception of the firm that may be detrimental to their brand. pitching sustainability as something that an institution is striving and innovating towards is accepted, while claiming to have all of the answers is not. so far, it has been argued that reputation is pivotal to the success of a university and that sustainability initiatives play a role herein. for the purpose of reputation, it is important that h ottawa is conceptualized within its own commitments to sustainability. nyilasy ( ) asserts that while balanced sustainability may have positive ramifications on a university’s reputation, skewing it would have the opposite effect. considering past sustainability initiatives and successes, the uo enjoys a good reputation in this field. theoretical frameworks this section will argue that uo embodies and enacts sustainability in ways that are consistent with the ecological modernization (hereafter, em) worldview. em provides a framework for environmental management that is consistent with the capitalist system that currently exists in canada. this approach to environmental problem solving is attractive to big corporations and governments, because it is not radical nor revolutionary. instead, em introduces the idea that environmental maintenance and economic benefit can coexist, if we make minor changes to our existing policies. em scholars would argue that however small, the discussion and findings chapter will provide a more detailed account of this. engaging ecologically restorative behaviours in dominantly economics-driven institutions, normalizes this way of doing things. the uo’s commitment to a brand of sustainability that is consistent with em, is criticized by green-marxism. green-marxists argue that em is not consistent with sustainability as it encourages over- production and consumption, resulting in the exploitation of our physical environment. from this perspective, these initiatives are semi-green at best, and a case of greenwashing at worst. consistent with em scholars, i will argue that h ottawa may be criticized through green-marxism, but is taking steps in the right direction. this project introduces innovative ideas about how we consume portable water as a society, in a way that produces less waste than using single-use bottles, and that encourages the use of public water receptacles. ecological modernization for the purpose of this thesis, i will use the sociology-based ideology of em. here, it is contended that companies change their practices based on the movement of civil society, as well as boundaries erected through government policy. in the early years of em development, it was used to explain observed changes in individual and organizational behaviours and priorities. similar to the brundtland report, em is grounded in the notion that environmental integrity and economic growth can be compatible. according to buttel ( , ), the rise of ecological modernization can be seen as a response to a particularly crucial shortcoming of north american environmental sociology…most of its major theoretical works had converged on the notion that environmental degradation was intrinsically a product of the key social dynamics (be they the treadmill of production, the ‘growth machine’, the persistence of the dominant social paradigm or of anthropocentric values, and so on) of the th century capitalist-industrial civilization… ecological modernization not only provided a way for environmental sociologists to more directly conceptualize environmental improvement; ecological modernization also provided a fresh perspective on the role of environmental movements by avoiding their romanticization, and by appreciating the particularly fundamental roles that science, technology, capital and state might play in the processes of environmental improvement. em became popular, as it challenged the presiding idea that core institutions of a capitalist society had to be overthrown to make way for environmental reform (young, , ). em was developed about a decade after the brundtland report was released. this is significant, as it was a time when people were increasingly fearing the environmental harms that presented themselves as a backlash of industrialism. at this time, em scholars argued that advancements in technology could be used to revitalize the treadmill of production. here, em asserted that it was how goods were produced that had to change, not the habits of over-production and consumption that capitalist societies were used to. unlike many other ideologies at the time, em stood out as optimistic, lending to its success. em has changed since its first articulation by economist and environmental sociologist, joseph huber in the late s. at this time, there were two dominant, but contending theories to environmental reform: the risk society thesis presented by ulrich beck and ecological modernization by joseph huber. according to beck, modern society is experiencing “profound transition(s)…where public faith in the achievements of mass industrialism is replaced by anxiety about its (unknown) effects on human health and the environment…the pursuit of modern ideals-wealth, technology, progress and unfettered consumption- have produced a series of ‘unintended consequences’ that are highly dangerous yet extremely difficult to control, and that are now ‘striking back’ at society and challenging some of our most important beliefs and institutions” (young, , ) here, young explains beck’s pessimistic view of modern society, arguing that through modernism, we are creating dangers that we cannot control, which will ultimately lead to our demise. unlike the risk society thesis, the em ethos asserts that capitalist production and consumption can be consistent with a more sustainable world. em scholars argued that institutions must simply tinker at the edges of existing policy to achieve ecological goals, as this would advance environmental management as a whole. cohen ( , ) argues, “…interest in ecological modernization derives from its purported ability to transcend current impasses through the enactment of a series of adjustments in societal organization… successful execution of this approach depends on the organizational internalization of ecological responsibility” here, cohen argues that we can make adjustments to our current system, however small, in order to produce a more ecologically responsible whole. from a sociological perspective, changes in society and governance inspire change in the way that institutions work. here, it is in the best interest of institutions to operate in ways that are consistent with how society moves, so that they do not hinder their reputation and client base. this argument is not rejected by businesses, because it promises economic maintenance, or at least neutrality. although not revolutionary, em has provided a means of understanding the significance of existing reforms as very significant and deep-rooted in the institutional transformations of markets, institutions, and governance. critics see it as apologetics, but em theorists insist they are only investigating trends that are underway. according to mol and spaargen ( , ) “… a capitalist or rather market-based system of production and consumption does not necessarily contradict significant environmental improvements and reforms in any fundamental way. more production and consumption in economic terms (gnp, purchase power, employment) do not have to imply more environmental devastation (pollution, energy use, loss of biodiversity)” for mol and spaargen, technology is no longer the answer to modernization, but societal trends. the authors argue that we can modify capitalism and our governmental policies to maintain the environment. em provides us with a framework by which we can hope to balance the tenets of sustainability. the brundtland report was created as a response to ‘apocalyptic’ ideas reflecting the physical environmental, making its aim to reframe debates in ways that promised security without changing much (young, , ). this is consistent with ideas of em. considering this context, sustainable development was presented as the small tweaking of current production standards to achieve environmental stability. for corporations, ideas presented through “‘ecological modernization’ only occurs when it makes sense for businesses to make environmental performance a priority. this decision is not based on altruism, but as a response to pressures exerted by the market, civil society and government… (as a theory, em) refuses to credit any single factor for changing corporate behaviour. instead, it sees companies as reacting to a complex web of forces- including changing consumer tastes, government policies, and the actions of competitors” (mol et al., in young, , ) em is strongly focused on the perception of a company from the consumer’s point of view. in the corporate context, em scholars argue that negative pressures, such as loss of reputation, are a more powerful incentive than expanded profits. here, it is important to maintain the physical environment for the purpose of attracting a broad clientele. the social tenet of sustainability plays a large part here, as economic gain and environmental reform are contingent upon consumption behaviours, the government and competition. this theory understands the complexities of social life, and that all tenets of sustainability are intertwined. em is about a capitalist system of production, but argues that we can do it better than currently. mol and spaargaren ( , ) argue that em proposes a “focus on redirecting and transforming ‘free market capitalism’, in such a way that…increasingly contributes to, the preservation of society’s sustenance base in a fundamental/structural way”. here, it is argued that an upheaval of the current system would actually be detrimental. instead of overthrowing capitalism, we must use it in a way that maintains the natural world so that society may continue to thrive. em argues that the capitalist system is actually favourable as corporations must be competitive and maintain societal favour to stay in business. here, the expectations of the buyers, or society, provide a series of incentives to keep corporations in check. as a theory, em asserts that we must apply the ideas presented above to the way we academically understand how organizations pursue environmental sustainability. em theorists argue that these empirical frameworks can- and have- been used concretely in environmental politics. in their article entitled ecological modernization theory: taking stock, moving forward, mol et al. ( , ) argue that, “ecological modernization scholars made important contributions to social theory through development of a systematic theory of institutional environmental reform; the introduction of a variety of theoretical invocations on the relation between society and the natural environment; the elaboration of new approaches in environmental policy and practice” em theory applies to the h ottawa project as it provides a framework for understanding why these kinds of initiatives are perceived as economically and environmentally valuable. using em theory, i analyzed uo’s commitments to sustainability and apply them to a social entrepreneurial project that would attract support from both the university and its community. em theory argues that capitalism is being gradually reformed to reflect ecological as well as economic criteria and priorities, through a combination of evolving knowledge, civil society pressures, and market forces. this aides not only in environmental conservation, but also in teaching the community that there are ways to problem solve for environmental management within this system. em theory admits that it is not ‘dark-green’ in perspective on the effectiveness of environmental politics, but does present applicable options for the capitalist system in which we operate. to elaborate, the ‘dark-green’ perspective is the idea of revolutionary changes in order to restore the environment, such as overthrowing the current systems in which we operate to benefit our physical environment (dryzek, ). ‘dark-green’ environmentalism may be seen through the green-marxist perspective, whereas em advocates for a ‘light-green’ approach to environmental governance through making small changes that align with our current system. an important aspect of em theory is the idea of ‘political modernization’. according to mol. et al. ( , - ), “political modernization refers to the renovation and reinvention of state environmental policies and policies in order to make environmental reform better adapted to the new conditions of late-modern societies. the debate on political modernization within environmental politics can be seen as an early formulation of themes and basic ideas of environmental governance… the concept of political modernization connected ideas on innovative governance in a direct and explicit way with the management of environmental change… political modernization… made room for various modes of steering and policy making applied by different actors outside the framework of national environmental governance… ecological modernization scholars have been innovative in allowing economic categories and concepts to enter theories of environmental reform.” the h ottawa initiative is emblematic of political modernization, as it seeks to ‘renovate’ the uo community’s perception of single-use plastic bottles. this project becomes an innovative policy of governance within the university, as it is an example of the way we choose to manage the community that we can be environmentally reformative in using our buying power. this tells us about how the uo manages environmental reform, which is explained by em theory. the initiative is unique as it produces a tangible product through incorporating political and ecological modernization. one of the strengths of em theory is that it can be easily applied to case studies such as the one at hand. for the uo, the fact that ideas presented through em can be used rather easily in the production of environmental management strategies lends to its adoption. the h ottawa project is an example of this as it is a relatively easy initiative to implement- for example, there are no costs involved as the project is self-funded and the university did not have to employ someone to follow through with it- yet, it lends to a positive reputation for the uo. em theory presents a ‘feel good’ approach to environmental management because it is not revolutionary but society understands even incremental changes to be representative of an institution’s commitment to environmental sustainability.for the uo, this project is being used to inhale their reputation and attract donations which aligns with the idea presented through em theory that we can innovate to achieve environmental reform. as previously noted, ideas presented through em theory have been adopted globally into environmental governance and planning. through globalization, we have the ability to see what different countries are doing and can adopt certain practices that fit within the context of our own society. according to mol et al. ( , ), “… governmental administrations, political parties, as well as environmental movements, have used the notion of ecological modernization to refer to their main aims and strategies (which) is indicative of the ‘practical’ proliferation of ecological modernization ideas”. through the conceptualization of the h ottawa initiative, ideas presented through em were used as guiding forces. for example, the project embodies the assumption that we must operate within the capitalist structure, using buying power and marketing in order to sell the idea of environmental sustainability. the fact that the h ottawa bottle is a tangible product helps the uo community to understand that there are inexpensive options to portable water that may not have been envisioned previously. in all, em theory has guided the advent of the h ottawa initiative through the application of ideas presented. critics of em argue that at its essence, encouraging production is unsustainable. for the purpose of this research, it is important to note that universities are not large sites of production. considering this, it is not what is physically produced on campus, but what the university teaches, procurement decisions, endorsements, and ultimately, following em logic that may be criticized. langhelle ( , ) argues: “…the core of ecological modernization is that there is ‘money in it for business’… ) pollution is a sign of waste’; hence, less pollution means more efficient production, ) solving environmental problems in the future may turn out to be vastly more expensive than to prevent the problem in the first place, ) an unpolluted and aesthetically pleasing environment may give more productive healthier and happier workers ) there is money to be made in selling green goods and services ) there is money to be made in making and selling pollution prevention and abatement products” the motivations presented by em are cause for critique. one of these, is that em cannot benefit the physical environment without also problematizing consumption habits in capitalist systems, such as canada’s (carolan, , ). through its commitments to capitalism and the maintenance income for corporations, em implies that growth is beneficial, when this mentality is not always sustainable. for the purpose of this thesis, em has been used to describe how uo approaches environmental problem solving. as will be seen in the findings chapter, there is no will to completely revolutionize the way uo approaches sustainability. instead, uo looks to modernize their ways of doing things to accomplish their commitments to sustainability. this is understood by uo’s community as being ‘good at sustainability’, presenting em-driven ideas of sustainability throughout the university culture. here, it will be argued that uo community enjoys a capitalist lifestyle while believing that their institution is acting environmentally, socially, and economically responsible ways. green marxism marxism has inspired many different theories within the field of sociology. for the purpose of this thesis, green-marxism is most applicable. according to foster et al. ( , - ), “…most analyses of the environmental problem today are concerned less with saving the planet or life or humanity than saving capitalism- the system at the root of our environmental problems…we live in a culture in which there is an ‘inversion of what is real and not real’, where ‘dying oceans and dioxin in every mother’s breast milk’ are considered less real than ‘industrial capitalism.’ hence, we are constantly led to believe that ‘industrial capitalism’… we are constantly led to believe that ‘the end of the world is less to be feared than the end of industrial capitalism… when most people in this culture ask, ‘how can we stop global warming?’ that’s not really what they are asking. they’re asking, ‘how can we stop global warming without significantly changing this lifestyle…that is causing global warming in the first place?’ the answer is that you can’t.’ through this excerpt, it is argued that maintaining our consumption driven way of life is prioritized over the physical environment. according to green-marxists, the essence of capitalism is economic gain, where the bourgeoisie class will stop at nothing to meet and exceed financial goals. it is the treadmill of production- and over production- that has gotten us into an environmental quarry; green-marxists would argue that we cannot use the same logic to get us out of it. scholars in the field of green-marxism argue that adopting socialism is necessary for an ecological revolution. foster et al. ( , ) argue that, “what is clear is that the longterm strategy for ecological revolution throughout the globe involves the building of a society of substantive equality- the struggle for socialism. not only are the two inseparable, but they also provide essential content for each other. there can be no true ecological revolution that is not socialist; no true socialist revolution that is not ecological…marx’s own vision of socialism/communism, which he defined as a society where ‘the associated producers govern the human metabolism with nature in a rational way, bringing it under their collective control…accomplishing it with the least expenditure of energy and in conditions most worthy and appropriate for their human nature’” political views of green-marxism oppose those of em. as seen through the excerpt, green- marxists argue that we must abandon our current capitalist system and adopt socialism. they assert that this is because the essence of capitalism is production and consumption, which is not mindful of the environment, but of the economic bottom line. similar to arguments around water as a human right, green-marxists argue that environmental resources must be shared equally and collectively. other scholars of green-marxism argue that marx cannot be perceived as an environmentalist. in her piece entitled green views of marx: reinterpreting, revising, rejecting, transcending breen ( , ) argues that “…writers who tended to focus their critiques on marx’s later works, insisted that he could not stand as an environmental defender and must be rejected rather than revised or reinterpreted”. here, it is argued that marx’s theories as they were written cannot be translated into environmental theory, although they have inspired this kind of thinking. one critic of green-marxism, plumwood ( , ) argues that, “those who work for an environmentally conscious non-capitalist society need to go beyond marx and draw on a broader range of philosophical, ethical, and socialist traditions (including the ethical traditions of some of the “primitive” societies marxists tend to see as so backward), for marx’s views on nature, and associated central parts of this theory, belong to the past, and are far too close to those which lie at the root of many of our troubles” this post-modernist critique on green-marxism argues that we have to develop environmental theory with our understanding of society as it is now, not how it was at his time of writing in the late s. this critique is one of many in the literature and directly applies to my use of the theory. although h ottawa makes another product available for purchase at uo, it is an alternative to other products that are much worse for the physical environment. considering this, it is important to look at what has perspired in society throughout the years, rather than immediately reject procuring more sustainable options to develop environmentally friendly behaviours. as argued, the fundamental difference between traditional marxism and green-marxism is that the former applies marxian theory to current environmental debates. despite this, the essence of the theories are very similar. for the remainder of this chapter, i will discuss what green-marxism is, and how it applies to the research at hand. ideas presented through green-marxism critique the idea that environmental sustainability can be achieved through technological innovation alone. the criticisms presented through this section will help us to mind characteristics of environmental preservation that are not addressed through incorporating an em approach. what is not captured through em, is the scale on which production occurs; while sustaining current social and economic trends of consumption, this is not always environmentally sustainable. in short, green-marxists argue that “to be considered ‘green’, sufficient improvements have to be made in either/both scale and intensity to reduce overall consumption of resources…sustainability can only be achieved if future economic growth has a diminishing overall environmental impact over time” (young, , - ) there is an essential contradiction between em and green-marxism, as em argues that overproduction is necessary, while the latter argues for an overall reduction in the consumption of resources. for green-marxists, an overthrow of capitalism is necessary as it is the consumptive appetite of this system that leads to environmental harm. applied to the h ottawa bottles, we should not be producing more bottles for the uo community, as this encourages the consumption of more resources than providing no bottle at all. although they do not see it as a solution, green-marxists are not against the use of technology for sustainable development. they argue that technology should be used, but not in a way that enables overproduction. in his article entitled green capitalism: the god that failed, smith ( , ) argues, “while no doubt there are many green technological miracles on the horizon, they cannot save us so long as we live in a capitalist economy. that’s because… under capitalism, there is no assurance that greater energy efficiency or materialist conservation would mean less consumption or less pollution so long as there is no extra market limit set to the growth of overall production” for growth to be green, it must stop when it reaches an environmental threshold; when growth goes beyond this, it is destructive for the environment. in capitalist economies, growth is perpetually encouraged regardless of environmental boundaries as we have seen throughout italics in original history. to refrain from destroying our physical environment, green-marxists encourage us to halt to (over)production. green-marxists contend that we live in a disposable society where overconsumption is commonplace. in this context, environmental technologies become dangerous as consumers believe they are acting responsibly through over consuming sustainable products. it is important to note that eco-efficiency is not the same as sustainability; believing that we are acting responsibly through over consuming- even the most eco-friendly products- is not sustainable. green-marxists argue that we must change these consumptive habits, rather than assuming that we are positively impacting the environment through consumption . smith ( , ) contends to this, arguing that “we cannot shop our way to sustainability because the problems we face cannot be solved by individual choices in the marketplace. they require collective democratic control over the economy to prioritize the needs of society and the environment… they require national and international economic planning to reorganize the economy and redeploy labour and resources to these ends… if humanity is to save itself, we have no choice but to overthrow capitalism and replace it with a democratically-planned socialist economy” it is our shopping habits and producing things we do not necessarily need, that are problematized. green-marxists argue that society at large must reform the ways they understand consumption, for the purpose of saving the environment. the behaviours of consumers have an impact on the way that sustainability is perceived. considering that consumers do not want to change their habits, and corporations do not want them to, standards of sustainable development have become weaker. it is argued that “…market demand from over consuming… has forced green certifiers to lower their standards so much to keep up with demand, such that today in most cases, ecological certification is virtually in canada, the industrial revolution bestowed a lot of environmental harm. in ottawa, an example of this is lebreton flats. for more on this, see: http://ncc-ccn.gc.ca/our-projects/lebreton-flats/history-of-lebreton-flats here, it is important to note that eco-efficiency and sustainability are not the same. http://ncc-ccn.gc.ca/our-projects/lebreton-flats/history-of-lebreton-flats meaningless” (smith, , ). as a society, we have refused to prioritize the physical environment over our allegiance to the capitalist system of wealth generation and concentration. resulting from this is the reduction in environmental standards to make people ‘feel good’ about their choices. this is problematic as it devalues environmental sustainability. through enabling corporations to over produce, as a society, we reject environmental conservation. this presents the case of greenwashing in a way that is not as transparent as false advertising may be. the deceptions presented through ranking systems are examples of ‘false consciousness’. for marxists, this concept is defined as “the condition wherein a subject fails to recognize its true identity” (shantz, , ). as discussed in the previous paragraph, corporations have pressured other firms to mitigate their regulations for the purpose of maintaining the capitalist regime. this may be described as an extreme act of greenwashing, as it presents itself as sustainable yet is inconsistent with environmental conservation. johnston ( , ) asserts that this “ does not invite debate but instead assumes that a win-win situation for people and the planet can be achieved without sacrificing profits or requiring state intervention and regulation…with these three priorities appearing together in the same list, the priority of profits in a corporate logic is framed as self-evident and the profitability of ecological degradation and resource scarcity is whisked away from view” here, the author argues that this view of sustainability is non-critical and pro-capitalist. institutions use ecological modernization as a guise, to market a project as sustainable when it- at best- incorporates the environmental tenet of sustainability. it has been argued that presenting environmental protection in these ways mitigate its true meaning. in his article entitled a theory of post-ecologist politics, blühdorn ( ) argues that em skews a less convoluted definition of ecologism, thus obscuring ecological action altogether. according to blüdhorn ( , ) “even by the well-educated middle-class young, formerly the core of the environmental mass protest, (ecological action) is more often regarded as troublesome, or even critical opposition to, infrastructural and economic modernization”. here, society is distracted from a version of environmentalism that is actually focused on the environment, rather than on maintaining current society. in short, these contentions are problematic as they do not present all the facts, only those which suit the economy. green-marxists argue for an overthrow of the capitalist system to save the physical environment. the logic behind this is that the essence of capitalist is consumption, which is contrary to ‘real’ environmental sustainability. in his article entitled can green capitalism build a sustainable society?, harris ( , ) asserts, “…how can we ‘reject consumerism’ when we live in a capitalist economy where… most jobs depend on direct sales to consumers while most of the rest of the economy, including the infrastructure… is dedicated to propping up this consumerist way of life?… most jobs in industrialized countries critically depend, not just on consumerism, but on ever increasing overconsumption. we need this ever increasing consumption and waste production because, without growth, capitalist economies collapse and unemployment soars” here, it is unrealistic to reduce consumption in a capitalist economy. in relation to the h ottawa project, providing uo community with another bottle if they were to forget theirs at home is problematic. the encouragement to consume these bottles, and the reinforcement that this is a sustainable act worthy of praise, is problematic for green-marxists. it is not the small-scale production that uo enables, it is the mentality that this project may teach. for green-marxists, in a capitalist society, environmental sustainability is an option rather than a goal. when corporations have to choose to sustain the environment over financial gain, it is argued that they will opt for the latter or be driven out of business. according to smith ( , ), “profit seeking cannot be systematically ‘aligned’ with environmental goals, much less subordinated, because any corporate ceo who attempts to do so… will shortly find himself in hot water with his bosses, the shareholders, or if he were to persist, his company would be driven out of the market”. considering this, green-marxists argue that the choice must be made to prioritize the physical environment over capitalist gain. it has been argued that green-marxists criticize over production and consumption. to flip the current capitalist system on its head, it is argued that we must challenge the “fundamental…concepts that define the market as the highest aspiration of human freedom” (harris, , ). western society has been entrenched in ideas of ‘buying themselves out of trouble’ for decades, which may be a byproduct of our commitment to capitalism (szasz, ). according to harris, a revolution during this time of crisis “may push society to the left or right, but currently it means stagnation and deadlock” ( , ). in all, a fear of change will keep us where we are, further contributing to the economic-environmental crisis at hand. green-marxist theory will be used to critique the way that uo embodies sustainability as an institution and a culture. as will be seen through the findings chapter, uo produces sustainability initiatives in a way that green-marxists would argue is exploitative of the natural environment. uo will continue to run as a capitalist institution, selling products to their students that will make their experience the best and most comfortable it can be. however, it will be argued that uo opts for products to sell that are more environmentally friendly than competitors. this was a prevailing logic in the conceptualization of h ottawa. in his book shopping our way to safety, szasz ( , ) argues that westerners “barricade themselves, individually, from…threat, trying to shield themselves from it. act jointly with others? try to change things? make history? no, no. i’ll deal with it individually. i’ll just shop my way out of trouble.” throughout his book he argues that this attitude will eventually degrade public services and cause harm, but we are too scared to change our way of being. chapter : methods this section will discuss the methods i have used for data collection in conducting this research. i have used qualitative methods to answer my research question. more specifically, i employed a ‘living action research’ approach as defined by mc niff and whitehead ( ), as well as in-depth interviewing as defined by taylor et al. ( ). the ‘living action research’ approach was the main method of data collection, as it allowed me to use my experiences in conceptualizing and implementing the h ottawa project as research. this approach requires validation of my experiences, for which i have used in-depth interviews. at the time of this research, i was employed as an intern at the uo’s ocs. therefore, most of the data collected through the ‘living action research’ approach was in this context. through my internship, i found groups on campus to endorse h ottawa. this project was marketed as an inclusive uo sustainability initiative and a branding exercise; considering this, i contacted directors of communications and marketing from each faculty on uo campus to make h ottawa a reality. after establishing a working relationship with these faculty representatives, i asked each for an interview to triangulate the data collected through my approach to ‘living action research’. this section will discuss which methods i chose to use and how i used them. qualitative research in sociology, the most widely used categories of data collection are qualitative and quantitative. for the purpose of my research, i have chosen to use a qualitative approach to data collection. although there is no true right or wrong method to sociological research, there are more or less effective ways of getting answers to questions presented. according to (silverman , ), we are not faced…with a stark choice between words and numbers, or even between precise and imprecise data; but rather with a range from more to less precise data.… [o]ur decisions … should depend on the nature of what we are trying to describe, on the likely accuracy of our descriptions, on our purposes, and on the resources available to us. a qualitative approach to data collection is appropriate to this research, as i am trying to describe the specific motivations, and related actions, of people within an institution. for the purpose of my question, interviews and participant observation are most fitting. as mentioned earlier, my research aimed to answer the question: how does the uo implement sustainability initiatives in a way that complies with the value-set of the university, while also satisfying community expectations? in reviewing uo’s documents, i came to learn that the university has no specific method for employing sustainability initiatives; university staff are responsible for their conceptualization and execution, using their own interpretations of uo’s values to guide such decisions. a qualitative approach to data collection allowed me to use my experiences as an intern at uo to build rapport with staff, who became my interviewees. as a researcher, the qualitative method to data collection enabled me to access detailed accounts of what was happening in my social context. living action research for the purpose of this research, i have used a living action research approach to data collection and analysis. here, i used the experiences i encountered through the creation of h ottawa to understand the research project in its entirety. first, it is important to understand action research itself. according to mc niff and whitehead ( , - ), “action research is a form of enquiry that enables practitioners in every job and walk of life to investigate and evaluate their work…action research aims to be a disciplined, systematic process…action research is about action: taking action to improve practice; and research: finding things out and coming to new understandings, that is, creating new knowledge. in action research the knowledge is about how and why improvement has happened… action research is a form of personal-professional development” the authors present action research as an approach that can be adopted by anyone, not only professional researchers. this was beneficial to my research, as i was encouraged to act naturally and use my experiences as data. if i was not engaged, the data collected would have been less informed. additionally, this method of research allowed me to grow as a sustainability practitioner. throughout my internship, the h ottawa initiative came to life, which was the product of action, as well as producing and materializing knowledge, that did not previously exist. the ‘living’ part of action research refers to the fluidity presented by this type data collection. mc niff and whitehead ( , ) describe ‘living action research’ as, “person-centred forms of theory are about what ‘i’ am doing as a living person. ‘i’ speak about action research as something i do, as part of ‘my’ experience. ‘my’ theories take on a living form: the explanations the person offers for their life and practices are within the way they live and practice. so, it is usual nowadays to understand the word ‘theory’ in two ways: as an abstract propositional form about what is happening for other people; and as an embodied living form about what is happening for me. this latter view has given rise to the term ‘living theory’” in all, living action research (hereafter, lar) is presented as a method of data collection whereby i use my daily actions in a specific social context to create knowledge. here, i recorded my observations through informal notes as well as by writing the minutes for all meetings i attended. i recorded my observations mainly on my laptop, but also in a notebook. through the analysis of the data, i coded all notes recorded as well as email threads. this is appropriate for the research at hand, as it allowed my interpretations to change and develop as the project did. figure . table of codes: economic return ethical consumerism/soci al good environmental conservation reputation corporate university working in silos employee/student dedication - does the respondent mention costs? - how does the respondent frame costs regarding sustainability? - does the respondent mention the financial climate at uo? - is the respondent concerned with initiatives paying themselves off? - do respondents connect economic savings with environmental benefit and social good? - did economics hinder the respondent from participating in this project? - are respondents talking about the good of the students, or ‘clients’? - are respondents talking about what is for the betterment of the university’s culture? - are respondents talking about the people-element of this project? of sustainability? - do respondents connect social good with economic return and environmental benefit? - how does this project connect our community? - are respondents talking about environment conservation? reform? management? - are respondents talking about this project as beneficial to the physical environment? - are respondents connecting environmental conservation with social good and economic return? - how does this project connect to the physical environment? - was this a prime motivation for the acceptance of the h ottawa initiative? - are respondents talking about the university’s reputation and how sustainability initiatives align? are respondents arguing that h ottawa fits within the image uo wants to portray to future clients? - do respondents argue that this initiative is consistent with the university’s mission? - what are respondents saying about branding? - what are the respondents saying about media? - how do respondents understand the relationship between sustainability and reputation? - are respondents talking about students as consumers or clients? - are respondents referring to the university as a business? - are respondents talking about university policies surrounding sustainability? - how is the university using its resources to become a leader in sustainability? how is the university using its policies to enact sustainability? what does this have to say about how the university’s understands sustainability as a whole? - do employees feel like they can fund sustainability initiatives without backlash? what makes employees feel like they can make these choices? - do employees feel supported by their faculties to endorse sustainability initiatives? - do employees realize the efforts that are happening on campus regarding sustainability? - is there a newsletter or some form of media that is offered to employees to keep them up to date on sustainability efforts at uo as a whole? - are employees going above and beyond to implement h ottawa? - would h ottawa have been a success without the dedication of employees and students? - how did employees show dedication? did they stay after- hours? call me on their personal devices? take time out of their lunch or busy schedule to meet with me? - how did my dedication to this project lead to its success? lar embraces biases inherent to the data collection rather than trying to justify them. this is useful as the conceptualization of h ottawa is the product of mine, and uo’s, values. mc niff and whitehead ( , - ) argue, “ontology is the study of being, and is strongly linked with values… our ontologies influence how we view ourselves in our relationships with others… action research is value laden; action research is morally committed; action researchers perceive themselves as in relation with one another in their social contexts… action research is done by people who are trying to live in the direction of the values that inspire their lives…your values come to act as your guiding principles. action research often begins by articulating your values and asking whether you are being try to them” it is an inherent tenet of lar to use one’s personal values in the creation of data. my ontological commitments to the triple bottom line of sustainability drove me to see the h ottawa project through to completion. of course, there is no way to perfectly balance all three tenets of sustainability, but there was definite effort. in developing h ottawa, i viewed myself as an advocate of ecological modernization; i value our physical environment, but also believe that human beings should be comfortable in daily activities. my ontological commitments to my community influenced the support of a product that is not necessarily essential, but makes daily life a little bit better. using lar was interesting, as it enabled me to use memories, in addition to more precisely documented observations, as field notes. for my research, i used an inductive method of coding. when i started h ottawa, i did not intend for it to become the topic of my thesis. i gathered my experiences and started collecting field notes when the project got funding, about months after its conception. inductive, or open, coding was used for data analysis. after my field notes were written, i searched for common themes; i did the same thing with data collected through interviews. i settled on the categories that have been presented through the literature review chapter. coding will be further explained when i have gone through my use of interviews, at the end of this section. considering the casual nature of conducting lar, validation through other means of data collection is important for well rounded research. according to taylor ( , - ), …the term triangulation refers to the combination of methods or sources of data in a single study… although field notes based on firsthand experience in a setting provide the key data in participant observation, other methods and approaches can and should be used in conjunction with fieldwork. triangulation is often thought of as a way of checking out insights gleaned from different informants or different sources of data. by drawing on other types and sources of data, observers also gain a deeper and clearer understanding of the setting and people being studied. in short, triangulation assists in ensuring that research is more balanced for accuracy. in using lar, i cross-referenced my understandings of social situations with colleagues for validity. to further ensure that my colleagues were heard, i interviewed them one-on-one, to get their thoughts on specific matters even more in depth. in the next section of this chapter, i will speak to my use of in depth interviews for data collection. interviews as mentioned in the past section, interviews were used to triangulate the data i collected through my internship with ocs. the major difference between interviews and participant observation through lar, is context. according to taylor et al. ( , ), the primary difference between participant observation and in-depth interviewing lies in the settings and situations in which the research takes place. whereas participant observers conduct their studies in natural field situation, interviewers conduct theirs in situations specifically arranged for the purposes of research interviews were conducted on a day and in a place of the interviewee’s choosing, typically in their offices on campus. it is significant that the data collected through participant observation was consistent with what was divulged in interviews. possibly because data collection was done on campus grounds, there was a certain value set and demeanour that was upheld by participants in either setting. interviewing was necessary to supplement data collected through lar, to confirm my findings, as well as ask more pointed questions to fulfil my specific research question. as a social scientist, i largely relied on the verbal accounts and actions of those around me to answer my research question. interviewing helped me in this process, as it enabled me to ask more direct questions in a more intimate setting. according to taylor et al. ( , ), … (interviews) adopt a standardized format: the researcher has the questions, and the research subject has the answers… in most structured interviewing each person is supposed to be asked identically worded questions to assure comparable findings… in stark contract to structured interviewing, qualitative interviewing is flexible and dynamic. qualitative interviewing has been referred to as non-directive, unstructured, non-standardized and open ended interviewing… by in-depth qualitative interviewing, we mean face-to-face encounters between the researcher and informants directed toward understanding informants’ perspectives on their lives, experiences, or situations as expressed in their own words i describe my approach as ‘in-depth, qualitative interviewing’. although questions were premeditated to get the conversation started, most were quite open-ended to achieve a more fluid interview . considering that most interviewees hold similar employment positions within uo, they were asked very similar questions. however, some of my participants required a different approach based on their unique employment positions. one of the interviews conducted used only guiding questions, as she was more comfortable with having a recorded discussion. in all, my interviewing methods and questions were based upon the interviewee; not on our personal relationship, but based on their position and expertise within the university. alike all methods of data collection, regardless of how well an interview goes, data collected is not entirely accurate. it is argued that, “even when informants have come to accept and trust interviewers, what they say cannot be taken at face value as indicative of deeply held beliefs and feelings. in social interactions, meanings are not simply communicated, but constructed… knowledge and social meanings are constructed during the interview process” (taylor et al., , ) being employed as an intern at ocs throughout my research made data collection much easier. according to taylor et al. ( , ), it is important to “…get to know people well enough to understand what they mean and creating an atmosphere in which they are likely to talk freely”. as previously mentioned, i spent a lot of time with just under half of my interviewees experiences before the official interview. this helped me as a researcher as i more fully understood the motivations for their responses, and put them more at ease as they knew my it is important to mention that i had spoken with all interviewees at least once before conducting the interviews. i had built more of a relationship with just under half of my respondents, having weekly or monthly meetings with them leading up to the interview. specific goals for the thesis. interviewing was very useful in validating my experiences throughout the conceptualization of h ottawa, and in helping me choose categories through which i have steered this thesis. as mentioned earlier, coding of interviews was done inductively. through my internship, i developed ideas regarding how uo implements sustainability initiatives. from these assumptions, i built interview questions. for example, i came to learn that one’s position in the university determined the power they had in accepting or denying sustainability initiatives, so the first question asked was: “can you please tell me about your job here at the university?” from this, i asked respondents how they felt that uo embodied sustainability, and if they believed h ottawa to be consistent with these values. these questions were open-ended enough that respondents’ answers varied based on personal experiences. through coding, i recognized that respondents had similar answers, many having learned about sustainability through their work at uo. here, the use of inductive coding itself assisted me in finding intricacies between interviews that directly related to my topic of interest. interviewing was critical to the data collection portion of this research, as well as to the validity of this project more generally. when i emailed my respondents to endorse h ottawa during the summer of , most did not get back to me. this was because i did not explain through my email that h ottawa was my master’s thesis; i presented it as an advertising and marketing opportunity for faculties. one respondent who requests to remain anonymous notes, “i did not realize that this project was part of your master's thesis, and i understand that you need to know the reasons behind our decision” (anonymous respondent, ). here, it was not the project itself but my position as a student, that granted me access to respondents. in creating h ottawa, i had i no idea where to start. when i sent my first round of emails to faculty deans looking for endorsement in summer , i was discouraged by the lack of response. i spoke with my internship supervisor in september , and was told that i should not be interested in speaking with academics, but administrators who worked in marketing and communications. a few months later, i knocked on the doors of each faculty’s marketing and communications director at uo. when i explained to them who i was and what i was doing, the response was very different; i was invited in and well received by every one of them. this proceeded to take the form of snowball sampling as from one administrator, i was led to another; from one endorsement, i was granted another. these people eventually became my interviewees. as a graduate student, my first thought was to reach out to professors and academics for the purpose of progressing h ottawa. i learned that this was not the right avenue for my end goal of getting h ottawa bottles on the shelves at uo. i originally thought that universities were run by academics; through the advent of this initiative i came to find that there are two very distinct sides to canadian universities, as described in the section on corporate universities. in working with the non-academic side of uo, the project took on a very different form. h ottawa was no longer just a sustainability project, but became a highly marketable, grassroots initiative started by a master’s student. diverting from academia changed the conceptualization of h ottawa, as it became defined by the uo’s version of sustainability. the process to find interviewees redefined h ottawa, allowing it to thrive in a university setting. what is unique about this project is that it uses both academic theory and a pragmatic approach to sustainability to form a tangible product. i have worked to align these very different worlds to create h ottawa. chapter : discussion and findings the aim of this thesis is to answer the following question: how does the uo comply with its commitments to sustainability, while also satisfying the expectations of its community, through the implementation of h ottawa? to answer this question, i used a living action research approach, where i triangulated the collected data with semi-structured interviews. in this chapter, i will start with a discussion of the data collected using action research. i will then review the interviews, discussing them in relation to the topics outlined throughout this thesis. living action research through my internship with the office of campus sustainability (hereafter, ocs), i learned what was required for a sustainability initiative to come to fruition at uo. first, i learned that the office did not have specific a budget to support sustainability initiatives. let us recall that h ottawa was the product of conversations regarding the ban of bottled water on campus. considering this, we were inspired to use steps taken by the student (jenna) who banned the sales of bottled water in as a conceptual guide. to convince the university to ban bottled water, jenna argued that: the uo community is already accessing water through fountains; uo community should not have to pay for a resource being provided to them for free, twice; and that uo would save money through abolishing the waste that single-use bottles produced . through this experience, i learned that for ocs to accept a sustainability initiative, it had to be: environmentally beneficial in some way, something that the campus community would endorse, and most importantly, promise an economic return or at least to break even. in short, the project uo’s latest report on waste diversion revealed that the university saved $ cad through waste diversion efforts in . the ban of bottled water is not solely responsible for this amount, but the report presents initiatives such as this one as being significant (university of ottawa, ) needed to contend to the triple bottom line of sustainability, consistent with uo’s official commitments to sustainability. when i first started h ottawa in mid-september of , i learned that all sustainability proposals at uo start with a business case to solidify the funds needed. this is relevant as it frames these initiatives as small business endeavours, and the university becomes similar to a corporation. in my business case, i argued that the pilot project would be economically neutral, provide uo community with reasonable access to portable water, and that h ottawa bottles were better for the environment than single-use plastic bottles. when talking to students, i learned that many would buy a bottle of vitamin water or soda water, dump out the contents, and use the bottle to hold water for the day. these behaviours produced unnecessary waste, and were an annoyance to students. as for economic neutrality, this project was self-funded, meaning that all funds lent to h ottawa would be reimbursed upon the sales of the bottles. this means that i priced the bottles so that assuming all of them sold, the project would break even. of course, there was the risk that bottles may not sell at all. here, we argued that the bottles were inexpensive and could be distributed to students and guests to the campus as tokens of appreciation. uo was convinced that economic risks were low enough that they could approve the project. regardless of the amount of funding required for a sustainability initiative at uo, a business case is required. this is relevant as it frames these initiatives as small business endeavours, and the university becomes similar to a corporation. when conceptualizing the business case for this project, jonathan and i developed a cost-benefit analysis. here, we argued that students would be able to have reasonable access to bottled water on campus, that was affordable for the students and the university, and that was better for the environment than see appendix single-use plastic bottles. when talking to students, i learned that many would buy a bottle of vitamin water or soda water, dump out the contents, and use the bottle to hold water for the day. these behaviours produced unnecessary waste, and were an annoyance to students. when this document was drawn up, my internship supervisor and he took to his boss for approval. during this process, i was active in producing the business case, but not in presenting it. jonathan took the proposal to his financial managers because, being a staff member, he was to be held responsible for the trajectory of the project. jonathan let me know that if a student alone attempted to make this initiative happen, it would be very difficult. students cannot be held accountable if projects go awry, whereas staff members can. ocs assessed this proposal, and agreed to lend me ~$ . to make h ottawa happen. in addition to the general model for sustainability initiatives presented above, cost of the project was important because of the fiscal environment of the university. alex latus, uo’s communications and special projects manager for facilities, asserts: … given the current financial climate at the university- we are trying to tighten our belts. it is a lot easier to swallow an investment on something when we know that it will either generate a positive return, or at least not cost anything ( , ) alex argues that uo is in a financial deficit, meaning that the university cannot- or more accurately, will not- invest in projects that do not break even. this changed how the h ottawa project was conceptualized because it had to promise economic neutrality. i was appointed to find a bottle that would be inexpensive enough wholesale, to sell to students at $ . . it was at this stage in the project that cost-neutrality became problematic. through my experience, i learned that the market for inexpensive water bottles does not exist at this time. i found that most bottled water companies are competing with luxury reusable bottles, such as s’well which retail at ~$ . . consistent with societal trends of portable water, this expensive option exists at uo, where reusable bottles are sold at the university of ottawa bookstore for upwards of ~$ . . through my search, i found many promotional companies who sell bottles that businesses then distribute to special clients, but these were outside of our price range. i finally found a bottle from mckernan packaging in nevada, usa that fulfilled our financial requirements. this bottle is originally intended for cosmetic products, but i changed the top from a pump to a cap to make it look like a water bottle. once we found the bottle, we ensured that it was safe for its intended use. to do this, i asked the distributor for all of the speculations on the product and cross-referenced them with the government of ontario’s health and safety standards for food products. i was then required to make sure that the bottle was manufactured in an ethical environment, following with the university’s policies around procurement. uo’s policy regarding ethical purchasing states, the university of ottawa is committed to conducting its business affairs in a socially responsible and ethical manner consistent with its educational, research and service mission, as well as its own employment policies. this policy on ethical purchasing defines the principles and responsibilities pertaining to the conduct of business affairs at the university. when the distributor provided us with this information, jonathan rausseo brought the initiative to the financial manager at ocs for approval. these policy requirements had a large impact on the project, as it left us at the end, with only one option. additionally, uo has a policy that if a project is over $ , multiple options must be given and it would go to bid. to bypass this, we spent less than that amount, which enabled us to purchase bottles. considering this limit, we had to go to the faculties for financial support in order to sell bottles to students at $ . . i was then required to find the product and outline all costs involved for uo to have h ottawa bottles in their vending machines. the cost breakdown was as follows: $ . for a case of bottles, $ . for a box of caps, $ . for freight charges, and ~$ . for pricing for these bottles are in constant flux, depending on sales, new inventory from the supplier, etc. duty charges. uo agreed to purchase bottles for the pilot project of h ottawa that launched march , . bottles and caps were purchased in the quantities outlined as it was required by the supplier. the remaining caps are being held at ocs for (hopefully) future use. i was told that cost-neutrality was important in this stage to make the project attractive to the university’s finance managers. this approach was not questioned by any of the administrators involved at this stage, and was taken as given by other employees who became involved with the project at a later date. here, it may be concluded that sustainability initiatives at the uo must first be deemed economically neutral before conversations may start about getting approval. when the cost sheet was ready for h ottawa, jonathan and i met with philippe demers who is the manager of operations and finance for food services at uo. we were informed that to have the bottles in vending machines, it would be a $ . charge per bottle to rent the space and for the labour to put the bottles into the machine. including this fee, the cost of each bottle was $ . . considering that the intention of this project was to sell reusable bottles for the same price one would expect to pay for a bottle of single-use water, jonathan and i wanted to sell h ottawa bottles for $ . . due to the discrepancy in cost, we decided to ask marketing directors from all faculties for endorsements. at this point, it had been about a full year. the bottles were purchased on june , by ocs, on the condition that the project be not for profit and self-funded. in september , i started looking for endorsements from faculties. i personally knocked on all of the marketing directors’ doors at uo and spoke about h ottawa . i was endorsed by all faculties, with the exception of the faculty of science, mainly because they did not have vending machines in their buildings. i learned that vending machines use quite a bit of energy, especially those dispensing the total cost for the h ottawa pilot project was ~$ . i did not get to speak with the marketing director for uo’s faculty of medicine because they are not on the physical campus. they have become interested in h ottawa, and will likely endorse the second round. beverages, because they work as refrigerators. the faculty of science specifically had none, as they have many labs that use most of their energy budgets and could not afford to waste energy on vending machines to maintain leed platinum rankings. despite this, the faculty of science supported my efforts through marketing for h ottawa. endorsements from faculties were $ /bottle, which added up to a grand total of $ ; the endorsements were as follows: for telfer, for the faculty of arts, for the faculty of social sciences, for the faculty of education, for the faculty of engineering, for the faculty of civil and common law, and for ocs. with this extra funding, we were able to sell bottles to students for $ . ea; if all bottles sell, we are able to break even or be close enough that losses are negligible. bottles were also bought by the student federation of the university of ottawa to be sold at their variety store on campus called pivik. finally, food services purchased bottles to give to students who had bought boxed lunch meal plans. in the case that all bottles do not sell, it was agreed that they be used by faculties and ocs as ‘swag’ to give away at various events. the sales of bottles became an issue in march as vending machines were not dispensing the product properly causing students to lose money and become frustrated. the company who owns and maintains vending machines on uo campus, ventrex, has recently (may ) bought different coils for the machines to fix this problem. in addition, not all bottles were put into machines in the correct buildings. there was much frustration around this, as faculties paid to have their own branded bottles in their respective buildings. in future, we will test the condition of all machines before putting bottles in them to assure they are in working order . additionally, we will remove the information wrap that covered bottles, to assure that faculty branding can be seen and bottles are put in the proper buildings. when faculties decided to endorse h ottawa the initiative’s budget became more balanced, as costs were managed. this is where the triple bottom line of sustainability became important, as we tried to balance social, economic, and environmental tenets . the social tenet of h ottawa was twofold. first, bottles are sold empty which makes the statement that water is a human right as we are not containing and reselling water; this encourages students to use city of ottawa public water, as well as uo water fountains. second, the bottles provide uo’s community with portable water which was not available previously. up to the launch of h ottawa, if uo community members had forgotten their reusable bottle their only option was to purchase one from the university bookstore for upwards of $ . the economic tenet of sustainability was the cost management that i have outlined above, as well as providing uo community with an affordable option to portable water on campus. finally, the environmental impact of the h ottawa bottle is much less than that of single-use water bottles. in my experience with h ottawa, i have found that the environmental good these bottles represent along with the low price and availability has lent to the project’s success. in working with the faculties’ marketing directors, h ottawa became geared towards augmenting the university’s reputation. uo’s own marketing team also supported h ottawa by using my story for their defy the conventional campaign, which is used to gain donations. this is consistent with the em worldview, as uo used an innovative way of accessing portable water to draw donations and future students. advertising and marketing was beneficial to the project as some machines were tested with the bottles to ensure that they would dispense. bottles were originally tested in snack machines, but were sold in drink machines which caused dispensary issues. i am unsure as to why ventrex decided to put bottles in drink machines when it was not confirmed that they would dispense properly. see appendix see appendix experienced media relations officers and graphic designers were employed to popularize h ottawa, and also make the bottles aesthetically pleasing . in addition to this, the faculty of social sciences where i study, funded a photoshoot for me . using various media outlets at the school, faculties pitched h ottawa to students as an innovative sustainability project started by a student. the messaging was meant to attract future students, as well as show our current community that uo cares about sustainability and supporting its students. to conclude, my personal experience with h ottawa showed me that the university will fund a sustainability initiative if: all costs are returned, it is socially attractive and fitting with uo’s vision, and it is environmentally neutral or reformative. this logic fits within uo’s commitment to sustainability and to its community. uo entertained the idea of h ottawa because it was seen as an initiative that would enhance the student experience. in preparation for this initiative, i studied the archives of the student newspaper, the fulcrum. here, i learned that students understood and approved of the ban on bottled water, but missed having access to reasonably priced portable water on campus. uo satisfied its community through allowing this project to come to fruition. building a sustainability initiative at uo was definitely time consuming, but i would not say that it was difficult. i would argue that uo is committed to sustainability, which is reflected in the actions of their staff. that being said, there is a definite need for sustainability champions on campus to implement initiatives. the interviews section that follows will act as support for the data outlined here. interviews this section will discuss the interviews i had conducted to triangulate data collected through living action research. i chose to interview all marketing directors that i worked with in see appendix - see appendix the implementation and conceptualization of h ottawa. these staff members, i came to learn, dictate which student initiatives come to fruition. this is because they hold much of the finances for their respective faculties, which is telling of uo’s commitment to their reputation and image. marketing directors choose initiatives based on the value to student experience, how they reflect the university’s image, and if they work within budgets. considering this, their viewpoints are important in revealing how the uo complies to sustainability, while also satisfying the expectations of its community. for the purpose of this thesis, i conducted interviews. most interviews used the same interview guide ; this guide was manipulated for staff who had different job titles. all interviews were conducted at uo, at a location of the interviewee’s choosing. interviews were conducted from september to january and have been transcribed for accuracy. i used inductive coding, where i read all interview transcripts and chose codes from the data collected. these codes are: economic return, ethical consumerism/social good, environmental impact, reputation, corporate university, working in silos, and employee/student dedication . not all topics were used in the literature review and theory sections, those that were excluded were less popular among interviewees. categories of interest including: economic return, environmental impact, the corporate university, ethical consumption/social good, and employee and student dedication, will be used to guide this section. following this, i will review how h ottawa was conceptualized through an ecological modernist worldview. i will conclude this section with a discussion of how h ottawa may be critiqued through a green-marxist lens. see appendix i also coded for student experience, greenwashing, and health, but they have been omitted due to lack of popularity. interview analysis economic return as noted in the living action research section, economic return was fundamental to the fruition of this project. according to jonathan rausseo, “programs that work best are the ones that end up having some form of financial or social payback…the bottled water free campus is an example… even though the university is looking down the pipeline, saying ‘oh! bottled water is one of our highest marked up, best selling items’ and we’re coming along saying… ‘we’d like you to get rid of that’… it takes a certain amount of trust from these groups to be able to say ‘ok, we’ll get this happening’, but if the payback is there- then it can be done” (rausseo, , ) jonathan argues that for a sustainability initiative to receive funding, it must provide financial or social payback. what is interesting here, is that the social payback generally manifests through an augmentation of the university’s reputation, which attracts future students. according to marcelle kimberly, uo's manager of strategic initiatives, the end goal when approving projects is to generate more money, which is then reinvested into the student experience (kimberly, , ). in doing this, uo becomes a place where students want to be as they feel that their values are reflected; here, uo has the opportunity to buy their reputation through being strategic with choosing which initiatives to support. this is consistent with the em worldview, as resources are spent to augment the institution’s reputation, which is important to attract civil society. sustainability has become important to the structure and growth of canadian universities. one of the reasons for this, is because the ontario provincial government is beginning to implement more serious fines if institutions go over certain resources quotas. according to food services dietitian and sustainability director maryann moffit, “…the economics for sure definitely a part- like once we manage…to get deeper into the conversation (regarding the sustainability initiative at hand), then it’s all about- we have to do this in a way that isn’t going to require us to hire another person. is it going to require somebody to take an hour out of their schedule everyday? because they don’t have that hour in their schedule, right? you have to find a way to do it that doesn't add or that adds like, so little that you can keep operating as per usual and include this new piece... what i say to people, i try to keep highlighting the zero waste legislation that’s coming- right?… so, it’s like, be ready or pay. so, we’re ready. i think there’s definitely that, i’m using that to leverage a lot of conversations bridging out a lot from these conversations about sustainability and how we’re going to get there- we need to get there, we’re going to be made to get there- so let’s get there first so that there’s no penalty right” (moffit, , - ) first, sustainability initiatives must align with the uo’s mission, and then they must not cost the university any money. for maryann, illuminating upcoming legislations are important to convince the university to employ more sustainability initiatives. she goes on to mention that even with budgetary cutbacks, the university would continue to implement sustainability initiatives in food services because “a lot of them save us money” (moffit, , ). in centring her arguments around financial loss and budget cuts, she is able to convince her financial management team to fund initiatives that she supports. this is consistent with the em ethos, as maryann argues that uo wants to be progressive by anticipating where society is going. ideas such as these help push the government into implementing sustainability policies, through proving that it is possible to achieve certain goals. the majority of interviewees noted that uo is currently facing budgetary cuts, and insinuated that this was a big reason as to why economic neutrality within projects is so important. according to the marketing director of telfer, christian coloumbe, “…in a tight budgetary environment it's going to be a lot easier to get initiatives approved if they have no impact on the budget, or if it’s… instead of buying ‘x’ buy ‘y’ because... it'll be about the same price… if budgets are tight, investing in something that will have no return will be more difficult. buying bottles of water with the logo on it at $ each... it's not- not that it's not material- but it's not a huge expense…i can easily include that in my budget, and i won't spend $ on something else, but i've spent it on that and it’s equivalent and it works well. the fact that it's sustainable and that it’s good for the environment is a bonus” ( , ) here, it is argued that uo might invest in a project with no economic return, but it is unlikely considering their financial status. h ottawa was possible for christian's faculty because of the low price for endorsement, in addition to being for a sustainability initiative. this is consistent with ideas presented through em, as it proves that we can develop sustainability initiatives that balance environment reform and economic neutrality. environmental impact considering h ottawa was pitched to university staff as a sustainability initiative, many interviewees addressed the topic of environmental impact. when asked if their own faculties had done anything for the specific goal of benefiting the environment, most responded that they did not. despite this, all respondents noted that uo was ‘getting better at sustainability’. when i asked how they believed this was being done, most respondents pointed to policies created by ocs that all faculties are required to oblige, such as having recycling bins in their buildings on campus. this mindset is consistent with the em approach to environmental management as being ‘good at sustainability’ does not require a radical shift, but small changes at the fringes of policies define environmental progression. through the advent of h ottawa, i learned that staff and students are responsible for the bulk of sustainability initiatives that exist at uo. according to vice dean of governance and internationalization of the faculty of social sciences nathan young, “... (sustainability) becomes like an individual preference as opposed to an institutional mandate” ( , ). jonathan rausseo, campus sustainability manager, updated the university’s sustainability policy in late . when this comes into effect, all faculties will be required to design their own sustainability policies and direct more effort towards reaching the goal of being a more sustainable campus. this policy was created to force all faculties to think about sustainability. students and staff being responsible for innovative sustainability initiatives is problematic as when champions have graduated, there is no incentive to continue to develop or maintain these projects. with this policy in place, there is hope that uo as a whole will continue to get better at sustainability. when asked to define sustainability, most respondents focused on the environmental tenet. according to guillaume cossette, marketing director for the faculty of arts, “(sustainability) is the capacity to have our way of life in the longterm without impacting our environment, our community, the resources that we use for our needs- because we still need to consume things… sustainability is the capacity to sustain our way of life, develop our economy in a way that we will not run out of air, water, timber, resources, green spaces, dark skies at night if we want to go as far as that… it is the capacity to grow without impacting or having a negative impact on our resources” ( , ) this definition of sustainability fits in line with the definition that uo has drawn into their official mandates. here, we can see that the university hires people who fit within the dna of the institution. during the launch of h ottawa, the university is structured in a way that requires employees to manipulate their budgets to support sustainability initiatives or to create them on their own. although there are employees mandated to keep the school up to date with sustainability initiatives, very few people hired for this purpose. it is important in our structure to have employees and students such as myself, dedicated to sustainability to push these initiatives to fruition. we can see the importance of sustainability to uo community, as many student groups on campus are dedicated to creating and improving sustainability initiatives. enactus is one such group, making their goal to create social enterprises that are in line with the tbl of sustainability. marketing director of the telfer school of business christian coulombe, notes that there's a magazine called ‘corporate knights’ … they’re all about corporate social responsibility and sustainability… they do a top mba programs that support corporate social responsibility initiatives and last year telfer was in the top …whenever they review courses, they always want to make sure that they stay current with trends and what's going to be useful for graduates once they get their degree… i think that the ideas of csr and sustainability, it's been a long time that we've been talking about including that in the curriculum. i think it's based on market needs…our students do projects like growing food in iqaluit in those containers, or they have a project now that they've applied for- a competition to get money on recycling plastics- and so there are all sorts of projects, initiatives that they do, and it's all run by students… our role is… to support them ( , - ) christian argues that students want to learn more about sustainability and that telfer will oblige by creating courses that meet this need. in addition to this, uo lends students financial resources and support to create innovative solutions to- in this example- food scarcity. in all, it can be argued that uo and its employees dedicate their time to improving sustainability on campus. uo is a downtown campus and is designed in a way that makes it much easier to travel on foot or by non-motorized vehicle. by virtue of this location, uo receives high rankings in sustainability. according to nathan young, “…we have certain structural advantages here in that way. we’re an urban campus, we are located at the core of a pretty big city by canadian standards, the campus is quite contained…it’s not sprawled out like a lot of them are. so, you know, that limits the amount of parking that there is on campus, it also improves the accessibility in terms of cycling and walking and transit- we’re on the main transit line. i think that that more than anything else has kind of been the ace in the hole when it comes to the university of ottawa and how its performance gets reflected in these rankings is that we have this you know, kind of a structural advantage, some might see it as a disadvantage if you want to drive to campus… it’s almost impossible to get parking, it’s also almost impossible to get here or to leave just because of the way that the road system is structured, but it is quite accessible by bus” ( , ) in addition to these structural advantages, uo has made sustainability an institutional priority. the university has lent its resources to create a sustainability department where people are employed for the purpose of creating initiatives and staying up to date with various policies. jonathan rausseo is responsible for implementing most sustainability initiatives on campus. he argues that, “we (uo) are really good at managing our resources, so like water, energy, transportation…we do pretty good at the community side of sustainability, working on social justice issues, trying to take into consideration socio-economic impacts of our projects and so forth. on the curriculum-research side of things, we’re not as strong as other institutions are- but we’re still doing pretty well” ( , ) here, it can be seen that uo directs the bulk of their efforts towards environmental sustainability. as he mentions, there is work being done towards social sustainability and in creating programs for students who want to learn more about it. at this time, uo is building a social entrepreneurship program for students which will be one of the first in the country. in addition to this, uo has resources such as pet therapy and free yoga for students when they need mental health support. through what i learned in my internship as well as from interviewees, uo is committed to innovative sustainability initiatives and is willing to lend resources to meet the goal of becoming a more sustainable campus. h ottawa promises to help uo reduce waste and inspire change in students’ habits. in purchasing this bottle, students have a canister to hold local water and learn to use reusable containers. this is fitting with the em worldview, as the h ottawa bottle presents the community with the same luxuries as single-use bottles of water, but retrofits the latter to be consistent with environmental expectations. the implementation of this project and the support it received from staff shows the uo’s collective commitment to innovative sustainability solutions to modern, downtown life. when it comes to implementing sustainability initiatives, i would argue that uo has the right people in the right places to meet their goal of becoming a greener, socially aware, and economically stable campus. importantly, these people are producing policy that will enforce those who may replace them to maintain their efforts. the corporate university many respondents spoke to the idea of uo as a corporate university. the marketing director for the faculty of law sylvie corbin, argued that uo has committed itself to sustainability because it is “…on trend. it’s attractive to donors, the general public, to know that this university is going that route” ( , ). according to sylvie the university wants to be innovative and creative for the purpose of attracting more money. although this motivation is reprehensible, the products that come out of it help to build a better future. during my time at uo, i have noticed buildings and spaces increasingly being named for large companies. sonia vani, marketing director for the faculty of social sciences, noted on this when talking about the living wall on the first floor of the faculty’s main building. the living wall is significant at uo, as it is “a nice instagramable space that people love…earned media on that space is just incalculable...if i were to try to look at that from a strictly money side of things, it wouldn't necessarily look like it was a winner” (jonathan rausseo, , ). according to jonathan, the living wall makes students feel good about going to uo which made its construction worthwhile. sonia was involved in discussions regarding naming the living wall, where she “…contacted (an indigenous family that uo works with) …asked her to tell me about her grandfather, and told her, ‘do you think the commanda family would be open to if we were able to lead an initiative to call this the all nations wall?’…whether you're an indigenous person or not, a first nations person or not, no matter what creed, no matter what religion, that this is a wall that welcomes people. so, for me, sustainability had this dimension that was also ‘all accepting’. i was told that it would probably get some resistance because we could probably get quite a lot of money given from an individual if it bore the name of an individual” ( , ). here, uo lends more attention to the economic benefit of naming the living wall for a corporation rather than maintaining this space where students can feel accepted. the prioritization of economic benefit over social good here contends to the argument that uo is a corporate university. in some ways, uo needs to act as a corporate university in order to function. uo is home to over students making a corporate structure necessary for efficiency. manager of strategic initiatives for student life, marcelle kimberly, spoke to the way uo services are run: “…we run our own services, like a business. so, we generate revenue and we receive- there are only two of our services that receive money from central. it’s a considerable amount, but we still generate most of our funds. so, for example, in residence, you know we charge for residence fees, to live in res. same with meal plans for food, that kind of stuff. we generate our own revenue. however, unlike businesses, we reinvest all of our money into the student experience…they’re all kinds of things, all part of the initiatives that we put forth for students. that’s what we mean by ‘reinvest’. we don't sit on the profit, we reinvest it in everything that we do and everything that we put together is with the student experience at mind” ( , ) according to marcelle, structuring the services that uo offers students as businesses is important for their maintenance. this also uo agency to choose what they want to sell to their community and gives them funding to support student initiatives. in all, uo is a corporately run campus for the purpose of efficiently offering a large student body services to make their time on campus more enjoyable. reputation as mentioned, h ottawa was created through work with marketing directors at uo. considering this, reputation of the institution became an important topic in interviews. for waste diversion coordinator brigitte morin, not only does diverting waste save the institution money, but “waste diversion strategies augment the university's reputation” ( , ). in working with the defy the conventional campaign team, h ottawa was used for purposes of gaining donations. nathan young notes, “if they're doing it with defy the conventional then they're using it for marketing, clearly. but also for fundraising and that’s quite interesting. they see this as being something that they can put out there to potential donors that are at the cutting edge, they're the movers and shakers, they're defy the ways that things are done. it’s a huge complement that’s for sure, because this is no small deal” ( , ) h ottawa was used by uo as a representation of what their students are accomplishing as well as advertising how the school funds student initiatives. the fact that uo is the first university to establish a program such as h ottawa, is important to its reputation as a leader in sustainability. the marketing scheme used has been successful, as the product has been pitched and sold to other companies such as desjardins. the defy the conventional campaign is used by uo to promote interesting projects that are created on campus. according to communications and special projects officer for facilities alex latus, “the university- or even potentially a professor- (uses dtc to market projects that are) interesting… as you know, the university’s campaign, defy the conventional, they appreciate having a sort of ‘home grown’ story with either a student or a professor that does something groundbreaking, or generally, defies the conventional. they have gone against the convention and come up with something truly interesting, and they have come up with a new discovery, or a different way of doing things” ( , ) for alex, the h ottawa project was a good fit for the defy the conventional campaign. he argues that the bottle provides a tangible example of ideas presented through em, that there are different ways of living comfortably while also maintaining our physical environment. he argues that h ottawa is good for uo’s brand because it shows student ingenuity and how the university structured and funded it, so it may come to fruition. future students will be attracted to this kind of a story because it shows them that uo is willing to stand behind their students, be that financially or otherwise. the h ottawa initiative further embodies uo’s commitment to sustainability, and becomes an institutional artefact that incorporates itself into the university’s image. through strategic initiatives such as this, uo becomes viewed as a sustainable university. for christian coulombe, our whole branding is about connecting you to what matters, and so, the ‘what matters' is always dependent on the person… in terms of what matters to the school, we’ve got our areas of excellence which are our entrepreneurship and innovation, health systems, management, and business analytics, but sustainability and corporate social responsibility is part of the fabric of the vision as well- or the mission of the school- because we want to graduate alumni who are going to influence, or have a good impact, on their career, on their organizations and on their communities. being sustainable is definitely in line with having a positive impact on your communities, so it’s well connected to the school’s vision ( , ) here, it is argued that uo incorporates sustainability into their branding strategies. in order to show their commitments to the larger community, the university funds and markets student projects such as h ottawa. in allocating funds to make h ottawa happen, the university makes the project representative of uo and its commitments as a whole. ethical consumption and social good h ottawa has been marketed as a beacon of social good, as the community is given access to portable water while maintaining institutional commitments to sustainability. according to nathan young, this project is a “feel good piece…it does play directly into the reputation of the university, i think it’s part of the image they want to project and i think it has indirect effects on how the university is perceived” ( , ). uo supported this initiative to show the broader community who they are as an institution. here, the university develops their brand as leaders in social innovation. this is important because it positions uo as a supporter of sustainability and reifies the university’s commitments to water as a human right. the h ottawa bottle helps uo to get their brand out to the community. banning the sale of bottled water was an important step towards having a more sustainable campus, but it took the access point to water away from the community. nathan young asserts that this created “…a real need. i think that allowing people to have access to this stuff when they are in class or whatever, when they're not near a water fountain is great… this makes a contribution at the more normative level, you know, normative changes happen slowly, but they happen through these incremental steps where it becomes normal to carry a bottle and it becomes abnormal to consume something in its more traditional form, right? …that’s an important transition that is underway, has been underway for a while, but is going to help, right? so, it also ties it into school spirit, gives it something that’s recognizable so that when people see it with others, they're going to be curious about it and hopefully go out to try to get one on their own. i think that norms around overconsumption have been challenged for a while, but in terms of getting that into the mainstream, this is how you do it. so, yeah, at the risk of sounding avuncular, i think that this is a great project and i’m very proud of you for having conceptualized it and seen it through a very difficult process, a very complex process” ( , ) h ottawa becomes not only a bottle, but something with uo’s logo that students can walk around with and be used to represent the school. additionally, students can talk to friends and family about the project and note how uo does things that are socially beneficial. finally, the bottle encourages uo’s community to use locally sourced ottawa tap water. in selling bottles empty, uo makes the statement that water is a human right. as noted in the literature review section, compartmentalizing water infers that those selling it own that resource. considering this, h ottawa bottles are sold empty; we do not go into small communities and take their water for the purpose of reselling it at a higher price. this is consistent with ideas presented through green-marxism, that the physical environment should be treated as a common resource for all of society to share. additionally, this argument created a platform to inform students of the high quality ottawa public drinking water. many students who study at uo are from other countries where drinking water might be subpar or even harmful. when moving to ottawa, these behaviours and ideas are likely to follow. here, h ottawa helps to inform the community that our water is of better quality than most bottled water, which may assist in changing their behaviours about bottled water. this is a social good as it instils confidence in ottawa’s governance and may encourage people not to buy bottled water finish. this section has been much smaller than the previous because most respondents viewed h ottawa as an environmental project rather than one pointed to social good. in our first interview together, jonathan rausseo notes that this is similar to what happened during the ban of bottled water on uo campus: “…the biggest misconception about the (ban the bottle) campaign is that people think it’s an environmental initiative…and it’s not? they think that if people come in and say… “we’re getting rid of plastic bottles” and people freak out and say like “well, you’re still selling all of these other things in plastic bottles uh, so you know, by that token, you should be selling bottled water”. and so, it’s the you know, where i tell people “no no, we don’t do this because uh, we are trying to get rid of bottles…so a lot of people think like, we’re going to reduce the amount of plastic bottles, and we have seen,an immense reduction in plastic bottles on campus, but that’s not the reason why we did the program” ( , ) here, jonathan notes that uo did not ban bottled water for reasons of environmental reform or maintenance. what is interesting, is that students got behind the campaign because they believed that it was to maintain the physical environment. similar to the h ottawa campaign, i have found that most of my respondents chose to support it because they saw it as an environmentally beneficial project rather than one to increase access to bottled water for students. this fits into the em framework because they see environmentalism as something that can be bought or ‘retrofitted’. the respondent working for the telfer school of business pointed to the social tenet of sustainability significantly more often than others. christian noted that telfer students are being increasingly taught of corporate social responsibility as part of the ethical component of their courses. for christian, “… sustainability is one of the areas, where it matters for the school to be involved… we have an endowed professor in sustainability, we have courses that make sure that it's part of the curriculum for students at the graduate and undergraduate level, there’s research done by our professors that touch on sustainability… it's always a theme in terms of management of things that we are trying to do… the larger theme of corporate social responsibility and sustainability…i don't think you can, i mean, forcing people, you know, ‘you must adopt sustainability initiatives’, i guess it’s one way to do things, but where it can have a bit more impact is where it comes from the person themselves” (coloumbe, , - ) christian gives a good account of social sustainability here, noting that it has to ‘come from the person themselves’ and relating that to ideas of social responsibility. it is significant that the representative of uo’s business school had the most to say on this topic, as it ends to ideas of the corporate university and inspiring ethical consumption through marketing. in all, most respondents saw the h ottawa initiative as one of environmental reform and maintenance rather than a project for social benefit. similar to the ban of bottled water, environmental maintenance was part of the inspiration behind the project, but access to potable water was the driving force. through marketing the project, universal themes of political responsibility for the canadian government and human rights to water, as well as environmental benefit, were exaggerated. employee and student dedication the final theme found through coding the interviews was employee and student dedication. many respondents commended me on the success of this project, and putting time and effort into its execution. for my internship supervisor jonathan rausseo, “…genius is % inspiration and % perspiration… ideas are cheap. very cheap. i have come up with hundreds of ideas that can save the university millions of dollars. you know? we can sit here right now and just like ‘you know if you went to the free store you could probably save yourself tens of thousands of dollars’ and it’s like ‘whoa i just saved tens of thousands of dollars!’ it’s cheap! it’s just an idea, or a thought. but perspiration, doing the project, that’s the hard part- otherwise we’d all be billionaires with our ideas if they were actually worth anything. going in, putting in the work, the sweat equity on things, that’s what’s important. so, kudos to you for actually having put in the sweat and the time to making this happen” (rausseo, , ) jonathan noted that many students will email him with great sustainability-related ideas for the campus, but the majority do not follow through on executing them, even when given the chance. here, sustainability at uo becomes a student or employee passion project, rather than something that we are sanctioned to implement. the respondents who worked with me the most closely through the execution of h ottawa, were those with the most experience in sustainability. by this i mean that these interviewees either committed themselves to learning of sustainability in the classroom, implementing initiatives that they believed in, or both. this is noteworthy because these uo employees were not required to help me through their contracts, but did so because they wanted to. for the remainder of this section, i will outline the background of these respondents and how they helped me in the implementation and conceptualization of h ottawa. at the faculty of social sciences where i am a student, sonia vani was heavily involved in conceptualizing a marketing strategy for h ottawa. sonia came to uo from working with the council of canadians, which is a non-profit environmental activist group that specifically advocates for water as a human right. in addition to this, sonia worked with the student federation of the university of ottawa. here, she worked closely with their sustainability coordinator to help promote sustainability projects. sonia noted that when she was in this position, she felt fulfilled as “sustainability (was) part of (her) work even if it is not written into (her) job description” (vani, , ). considering sonia’s background, i approached her to help with h ottawa and she willingly obliged. for sonia, sustainability is important and something that she wants to pursue even though it is outside of her formal job description. in her interview, sonia noted, a lot of what i try to do is, if i propose something, sometimes i try to sit on it for a while until i find the right time or the right way to propose it. i sort of did that a little with this project, i didn't tell my managers about this project for many months until you, i, and jon, had met several times…i wanted to make sure that by the time i mentioned it, i was so convinced of this and had such a clear vision of where it was going that my influence would be like a bulldozer. it would be like, ‘ok, we of course we have to go through with this’. i find that i have to be that way with sustainability because …it’s actually very few people at the faculty, aside for some select few professors and select administrative personal that i know, personally take the environment at heart. i find that there’s still a culture of feeling like sustainability is something extra. totally opposite from where i’m coming from… (projects like this) is how change happens, it doesn't have to be that everybody is convinced all at the same time, everybody swallows the same coloured pill… i hope the project works, but i’m not going to measure its success by he number of bottles that are sold. i’m not concerned by that. i’m already measuring its success because of a student being able to talk about this idea and convincing a bunch of people who knew nothing about it before to put their time and money into it. that’s, for me, the real measure of success behind this (vani, , - ) here, sonia argues that most employees at uo do not care to add volunteering their time to help students with sustainability initiatives to their already busy schedules. as the director of marketing, sonia has many responsibilities, but does not see helping with sustainability initiatives as ‘extra’. considering this, her help with h ottawa is exemplary of her commitment to sustainability. without sonia, the faculty of social sciences may not have been as convinced that they should support h ottawa. at uo, employees with a passion and commitment to sustainability are important, as it is through them that projects like mine come to fruition. my thesis supervisor nathan young, was an advocate for the execution of h ottawa, and used his academic expertise to guide the conceptualization of the project. in building this project with professor young, i was inspired to go forward with the project despite the fact that it could have been risky to turn into a thesis. nathan notes that at uo, “… (sustainability) becomes like an individual preference as opposed to an institutional mandate” making it important for driven students to embark on initiatives (young, , ). considering the confines of our system, supporting a project such as this was integral to its fruition as i would not have had the time to work on it and my thesis cohesively. in addition to this, using academic outlets to address tangible projects is important for the innovation of social theory. i hope that the work done here can be reused by other students to understand how to implement sustainability initiatives within canadian universities, and not be discouraged to adapt it to their academic programs. professor young taught me that social theory is integral to the conception of lasting ideas, which inspired the conceptualization of this project. at the office of campus sustainability, i was intensely inspired by jonathan rausseo. i found jonathan so convinced that implementing sustainability initiatives was for the betterment of the campus, it was infectious. in our many discussions, jonathan assured me that the h ottawa initiative just made good sense. he went back and forth between his superiors and myself to generate approval, ensuring that this project came to life. in jonathan’s personal life, he notes: ... i’ve worked with a bunch of different groups. i sit on a couple of boards and so forth, so i’ve worked with some city groups and i’ve worked with some provincial groups. mostly related to… quasi governmental items… the university fits under the provincial context… i work on standards for rebuilding and advocacy, i work with a group of sustainability professionals from other universities… i’m one of the chairs… we work on trying to promote the professional aspects of being a sustainability practitioner (rausseo, , ) as can be seen through this excerpt, jonathan works on building his understanding of sustainability outside of what is required by his contract with uo. he had also worked with me after and before hours, to teach me now to make h ottawa a success. when i was going to deans for funding, he taught me how university procurement works, and forwarded me to the right departments. if it were not for jonathan’s undying support, i am convinced that this project would have taken much longer to implement, if not, had failed. to conclude, students are vulnerable when implementing initiatives in the university setting, as they are dependent on the support of either other students or faculties. the problem with mustering support from other students is that it takes time to build traction for a cause, and find the right media avenues to attract attention. at uo, other than student newspapers, i found no way for students to mass-contact their peers. in addition to this, there was no university-wide sustainability policy at the time of this project. considering this, there was not much knowledge or urgency around building h ottawa. at uo, the support of instrumental employees, for myself and this project, was integral to its fruition. ecological modernization theory the data analysis has alluded to how the uo embodies ideas presented by em in the conceptualization and implementation of sustainability initiatives. this section will illuminate how ideas of em inspired h ottawa. here, we may argue that uo’s understanding of sustainability and environmental management is consistent with an em approach to environmental problem solving. as mentioned, this story started with the ban of bottled water. when i learned of this ban, i found it silly that uo did not provide its community with a replacement product that filled the same purpose. of course, the motivations for this project were anthropocentric before they were environmentalist, which is consistent with the em framework. when conceptualizing this project, i found the reasons for why uo banned bottled water, and made sure that these expectations were maintained. this kind of thinking is consistent with em. the idea behind h ottawa, is not radical; i did not change how we access water in a revolutionary way, but i used what i already knew about uo society to provide a different option for thirsty students. here, the h ottawa bottle presents itself as a sustainable retrofit of single-use bottled water, or a modernized way of carrying water around. the logic here is simple: give students exactly what they get from bottled water, for the same price, in the same locations, but sell bottles empty and made from a recyclable material, to be consistent with expectations of sustainability. i would argue that this project was successful because it was not radical. the h ottawa initiative was easy for uo to implement because there was social, economic, and environmental space for it. similar to most other respondents, sylvie corbin, director of external relations at the faculty of law, states: “i think it’s a great initiative… i don't see any negatives coming out of this, period” ( , ). it was attractive for employees involved in the endorsement of this project that it seemed like a win-win. if this project presented some reputation or economic challenges, it is very likely that it would not have been so widely accepted. in addition to the reputation benefits presented through h ottawa, employees were attracted to the fact that the project itself was easy to implement. for jonathan rausseo, “a project like this ends up being low risk. so, if we don’t end up hitting our payback numbers, we’re talking in the hundreds of dollars, so that’s fine we didn't lose millions or anything. most people would be happy because it’s one of those like ‘at least you tried’ sort of thing… i think that this project, it’s just a really good idea ” ( , ) here, uo employees did not have to worry about making a poor decision in accepting this initiative. instead, staff were able to use their own agency and discretion to accept or deny the project. the h ottawa initiative shows how employees are integral to the presentation of sustainability for the institution. this aligns with the em worldview, as civil society is advancing how we understand sustainability within uo. in turn, these actors guide the embodiment of sustainability for the university. it should be mentioned that it is not common for universities to allow students to go about implementing these kinds of sustainability initiatives. this is because they require a range of resources, from financial to assigning employees for making them successful. the fact that uo allowed me to go ahead with this project shows the way it commits to sustainability. this is reflective of the em worldview, as it shows that spending resources on sustainability initiatives will be repaid in other ways, such as social payback and student experience. here, the resources used allows uo to be perceived as ahead of other universities which augments their reputation. in all, uo attempts to foresee what their community wants and fulfil that need. uo proves its commitment to sustainability through the advent of many projects, h ottawa is just one example. i would argue that all sustainability initiatives at uo are conceptualized through an em ideology. for instance, the enactus group that operates through the telfer school of management, has transformed old portables into greenhouses. these have been shipped to northern canada for the production of fresh vegetation year round. similar to the h ottawa project, this solution is not revolutionary, but provides an innovative solution to food scarcity in these parts. through my work at ocs, i have learned that this project has gained much popularity and turned into a successful business. in canada, we maintain a rationale that we can purchase what we need wherever we go. h ottawa does not suggest that we change this behaviour in its entirety, but that we offer modernized solutions to this issue. here, i argue that the purchase of a multi-use bottle rather than a single-use one is better for the environment. nathan young’s position on the project is as follows: oh, i don't have concerns. no, i think it’s a great project. as much as it sounds avuncular for me to say, i’m really proud of this work that you’ve done, i think it’s really great. i mean, there are direct benefits, clearly, and then there are indirect benefits. i mean, i think that the problem you identified at the get go…where if you want to consume water on campus and you don't happen to have a bottle, you don't have much of a health choice. you go out and buy like, a juice, or a coke, which is different from what you would find on other campuses that hadn't taken the steps in terms of banning the bottled water. so, i mean, there’s a real need there. i think that allowing people to have access to this stuff when they are in class or whatever, when they're not near a water fountain, i think, is great… this makes a contribution at the more normative level, you know, normative changes happen slowly, but they happen through these incremental steps where it becomes normal to carry a bottle and it becomes abnormal to consume something in its more traditional form, right? …that’s an important transition that is underway, has been underway for a while, but is going to help, right? so, it also ties it into school spirit, gives it something that’s recognizable so that when people see it with others, they're going to be curious about it and hopefully go out to try to get one on their own. i think that norms around overconsumption have been challenged for a while, but in terms of getting that into the mainstream, this is how you do it. so, yeah, at the risk of sounding avuncular, i think that this is a great project and i’m very proud of you for having conceptualized it and seen it through a very difficult process, a very complex process. ( , ) according to professor young, the h ottawa project will inspire people to change their behaviours on a micro-level. this idea aligns with the em framework as it presents small changes on the fringes of uo’s policies, that contribute to sustainability, but in marginal ways. here, there are efforts being made towards making uo a more sustainable campus, but not in radical ways. finally, the h ottawa project is representative of the em ethos as it demonizes waste. em scholars argue that pollution and wasted resources are signs of inefficiency and should be rejected when possible. the h ottawa bottle is metal, which studies show is less likely to be thrown in the trash (kauffman et al., ; miller et al., ). the rates of recycling aluminum is also a lot higher than plastics (kauffman et al., ). in addition to this, the h ottawa bottle is presented to uo community as a replacement to single-use bottled water . this production of aluminum products is less harmful to the environment than pet, and there is less of a carbon footprint in bringing these bottles to campus because you do not have to ship as many as often. green-marxism green-marxists would criticize the h ottawa project, as it inspires more over- consumption and production. this section will provide an overview of how the h ottawa initiative can be framed as regressive. i will start with the argument that green-marxists would frame the ban of bottled water as a step in the right direction towards a more sustainable world. next, features of green-marxism from the theory chapter of this thesis will be aligned with the attributes of the h ottawa project to present a critique of my initiative. green-marxists would argue that the ban on bottled water was a step in the right direction. this is because uo stopped purchasing this product altogether, forcing their community to change their behaviours and expectations towards portable water. if community members did not bring their own receptacle, the consequence was not having portable water, or see appendix . having to buy a bottle for upwards of $ at the bookstore. here, uo has put a stop to the treadmill of production; not using the same logic to get out of our environmental problems as they did to get into them. in all, rather than inspiring over-consumption, uo abolished access to what they agreed was an unnecessary resource. the ban of bottled water can also be understood as a step towards a more socialist society. in banning this product, uo took the responsibility of providing their community with potable water. contrasting this, the capitalist worldview would inspire more production of bottled water. here, there would be a stronger focus on the bottom line of sales from bottled water, rather than putting forth the university’s own resources to adjust water systems on campus so that all can access water free of charge. for green-marxists, environmental resources must be shared equally and collectively. uo’s commitment to providing this resource to their community and all visitors embodies this idea of accessibility, regardless of one’s purchasing ability. the ban of bottled water is a powerful move towards a more inclusive society. green-marxists argue for a rejection of the capitalist system. in its place, they argue that we must adopt a socialist system to radically change the thinking behind environmental protections. for green-marxists, socialism would enable us to better protect the physical environment as it requires that we share resources rather than privatize and resell them. the h ottawa project’s relationship with this is twofold. first, the bottles are sold empty, which encourages students to use publicly sourced water. this is consistent with the idea of sharing environmentally sourced resources, as it assigns responsibility to uo to maintain water systems. in contrast to this, the project sells a product that uses our shared resources for personal use. for green-marxists, this may be seen as is an unnecessary use of resources. with this project, we give people another choice to consume, which may relegate these previously formed good behaviours. in all, green-marxists argue that environmental resources must be shared equally and collectively. unlike ideas presented by em, green-marxists argue that small changes on the fringes of current policies will not protect our physical environment. as mentioned, environmental technologies can become dangerous as consumers believe they are acting responsibly through over consuming products that are marketed as sustainable. these products lose their meaning when used in this way, while consumers maintain the feeling that they are acting in the environment’s favour. this can be problematic when addressing the h ottawa project. here, consumers may start to forget their bottles at home more often because they know that there is an alternative. consumers may also purchase more than one of these bottles, producing new behaviours about consumptive habits that was previously not encouraged. the h ottawa project may also be criticized by green-marxists because it produces more waste. if students no longer want the bottles, or favour a different bottle, they are recycled. although aluminum is infinitely recyclable, meaning it is an easier and more durable material to meltdown and reproduce than plastic, there is still waste produced and energy used to recycle it. this perpetuates the behaviours behind the throw-away culture that we live in. green-marxists would problematize the inspiration for behaviours, stating that we are perpetuating the problem rather than working towards a solution. overall, green-marxists would criticize the h ottawa project because it is not radical and provides a new product for consumption. despite this, the bottle does encourage the uo community to share public water resources. the biggest problematic for me, is that people may treat these bottles as single-use which is not their purpose, and would produce a lot of waste. additionally, the possible unraveling of behaviours produced through the banning of bottled may become an issue. for next steps, i hope to track the frequency by which students recycle, or waste, these bottles. chapter : conclusion this thesis has followed the rise of the h ottawa sustainability initiative at uo. throughout this research, i have answered the following question: how does the uo comply with its commitments to sustainability, while also satisfying the expectations of its community, through the implementation of h ottawa? here, i found that employees entrusted to approve or deny sustainability initiatives, had the goals and aspirations of the university at the forefront. as an institution, uo focused on the student experience which included maintaining the tbl of sustainability. to implement sustainability initiatives, the university had to: act ethically to draw in socially-minded students, and support innovative strategies to fulfill their needs; act in a way that is consistent with environmental reform; and maintain or enhance their economic status. through the literature review section, i have outlined the relevant basis within which this initiative was built. in this chapter, i reviewed arguments surrounding water and water rights in canada, arguments surrounding sustainability, and canadian universities. this provided the reader with an academic basis regarding what inspired h ottawa, and what i learned before it was conceptualized. in the conceptual and theoretical frameworks chapters, i addressed the placement of uo and the h ottawa project within academic theory. here, uo was positioned as an institution that uses an em-lens on sustainability to augment their reputation. uo understands their students as ethical consumers, which is instrumental in teaching them what it means to be canadian citizens. finally, i outlined the green-marxist critique on em which outlines the flaws of viewing sustainability through the em lens. although uo uses a corporate view of sustainability, the university does value sustainability and has made it a official part of their commitments to their community and government. the final chapter of this thesis speaks of the discussions and findings. here, i found that most uo staff see sustainability through the lens that uo has bestowed upon them through its official commitments to the community. the main finding here, is that uo staff and students are integral in the implementation of sustainability initiatives on campus. if students are not supported by staff, projects may be underfunded and take a long time to come to fruition. at uo, there are committed employees and students that create innovative sustainability initiatives, as has been seen through the rise of h ottawa. without these passionate actors, sustainability projects within the uo structure would be unlikely to come to fruition. i hope that this thesis encourages the uo community to develop further discussions surrounding sustainability; this is the way that, as academics, we will be able to build on its definition. i also anticipate that this project may inspire some practical and multidisciplinary sustainability initiatives, to build upon tangible approaches to sustainability. as a follow up to this thesis, i plan to write a small brochure that teaches students what they need to do to have their ideas heard. in implementing h ottawa, i learned that these initiatives are time consuming, and one must be strategic in their conceptualization, but the feeling of satisfaction at the end- that you have done something for the greater good- is worth the stress and discomfort. i sit here, finishing this thesis, looking back at my journey, and know that it must be shared with others who like me, thought something like this would be impossible. find the right contacts, find a proper positioning to convince people that what you do is important, and nothing can stop you. works cited axelrod, paul ( ). are canadian universities sustainable in the years ahead? canadian issues. akehurst, gary et al. 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( a) chapter – the great debate: social constructionism vs. environmental realism. young, nathan ( ). chapter : making capitalism work? sustainability, neoliberalism, and ecological modernization theory. https://www.uottawa.ca/undergraduate-admissions/sites/www.uottawa.ca.undergraduate-admissions/files/ - _uottawa_international_admissions_brochure_en.pdf https://www.uottawa.ca/undergraduate-admissions/sites/www.uottawa.ca.undergraduate-admissions/files/ - _uottawa_international_admissions_brochure_en.pdf https://www.uottawa.ca/undergraduate-admissions/sites/www.uottawa.ca.undergraduate-admissions/files/ - _uottawa_international_admissions_brochure_en.pdf http://www.un-documents.net/our-common-future.pdf appendix : this is the paper wrap that is taped around each bottle. appendix : this document was produced by myself and jonathan rausseo for the purpose of presenting h ottawa to funding managers at the uo. reusable bottles for vending machines context the university of ottawa has been a bottled water free campus since . this has brought uottawa a lot of praise as a leader in water accessibility and environmental sustainability. issue although the campus is bottled water free, there is still demand from the community for beverage containers. solution offer inexpensive, high quality, reusable bottles in vending machines as a substitute for disposable bottles. social economic environmental demonstrates facilities commitment to sustainability. revenue neutral for capital costs (conditional) reduced plastic waste generated on campus. building positive habits for environmental change. reduced waste removal costs. reduced transportation of goods. first university in north america to embark on such a program. potential advertising opportunity. increase use of water fountains on campus. rationale placing reusable bottles in vending machines is a novel idea in north america. offering reusable bottles at the same price as bottled water would remove the barrier cost to purchasing a reusable bottle. similarly, by offering them in vending machines, they will be as accessible as any other alternative. the idea has already been accepted by food services who are willing to let us put the bottles in their vending machines. options plain bottle item unit cost quantity total cost reusable bottle $ . usd , $ , usd caps n/a , $ . usd delivery $ usd n/a $ . usd total $ . usd bottle with labels item unit cost quantity total cost stickers $ . usd , $ usd transport (to labeler) $ usd n/a $ usd transport (to uo) $ usd n/a $ usd total $ usd cost model item cost total cost costs place in vending machines $ , cdn bottles + caps + delivery $ , . cdn $ , . cdn bottles + cap + delivery + stickers $ , . cdn $ , . cdn item revenue total revenue sales in vending machines $ per bottle $ , cdn sponsorship (labels) $ , cdn $ , cdn avoided costs  recycling and waste hauling – reduces costs related to the manipulation and  hauling of recyclables, as well as reduces contamination costs related to plastic bottles.  earned media - substitutes for marketing and advertising costs related to creating pro- environmental behaviours and attitudes. additional details / options  donate additional funds to charity - any additional savings from the program could be donated to a water related charity. several have been researched that would be a good fit for this program.  unsold bottles - any product that is not sold in vending machines could be used as promotional products or gifts from facilities. bottles could be given away as prizes during events, given to volunteers, or supplied to new employees or either facilities or the university as a way to demonstrate commitment to sustainability.  branding - the option exists to use the bottles as a branding opportunity and bring on a partner to cover some of the costs of the program. there would be additional logistics with this option but it would offset some costs. appendix : this is the infographic that was created for the launch of h ottawa on march , . here, we specifically compare the h ottawa bottle with a single-use bottle. the purpose of this is to show the uo community that this product is meant to directly replace single-use bottles of water. appendix : this is how the bottles were going to look before we brought in the defy the conventional graphic designers, versus how they ended up looking. there is clearly more attention to aesthetic detail in the second image. appendix : on world water day, uo featured my story on the front page of their website. appendix : this is the article that cbc wrote on the h ottawa campaign. metal water bottles for sale in u of o vending machines bottles cost $ each cbc news · posted: mar , : am et | last updated: march celeste digiovanni may have found a solution for schools that have banned the sale of bottled water on campus. (university of ottawa) after banning the sale of bottled water on campus in to cut down on waste produced by plastic bottles, the university of ottawa has launched a new initiative — selling aluminum bottles in campus vending machines. it's something you can just grab if you forget your bottle, and you don't feel super bad about it. - celeste digiovanni university of ottawa student celeste digiovanni, a graduate student at the university, is the architect of the new initiative. she said the plastic water bottle ban left a gap for students who wanted easy access to transportable water. "it's something you can just grab if you forget your bottle, and you don't feel super bad about it," said digiovanni on cbc's ottawa morning. she said many students — herself included — were buying bottled beverages, such as pop, from vending machines and reusing the bottles for water. "plastic is actually downcycled, every time you recycle a piece of plastic, only a fraction of that plastic is reused," digiovanni said. wanted portable access to water digiovanni met with the campus sustainability manager and landed herself an internship with the sustainability office to come up with a plan to come up with a solution. "i was super torn, because on the one hand i agreed with the ethical implications and the environmental good — but on the other hand i still wanted a portable way to access water on campus." ultimately they decided to sell aluminum bottles in vending machines. the metal water bottles, which can be bought at university of ottawa campus vending machines, cost $ each. (andrew foote/cbc) the bottles cost $ each, and are sold empty — that way students are still encouraged to use public water and at the same time making it portable. the bottles can be used over and over again. digiovanni now hopes that other schools might look at the new program for inspiration. "i'm really hoping they might take it on." © cbc/radio-canada. all rights reserved. visitez radio-canada.ca appendix : these are some photos from the segment that tva filmed on world water day. appendix : this photo is from the photoshoot i did with the faculty of social sciences, which was used in the marketing campaign for h ottawa. appendix : this is the interview guide that i used for most interviewees. all interviews were inspired by this guide. interview schedule, h ottawa analysis preamble: thank you for agreeing to speak with me regarding your role in the implementation of sustainability initiatives at the university of ottawa. i am interested in the institutional procedures such initiatives go through to get the green light, or not. for this interview, i am most concerned with how sustainability initiatives are accepted or denied, deemed high or low risk, worth it or not etc. this interview should last between - minutes. please don't hesitate to ask me any questions at any time during the interview. if you wish to remain anonymous, i am willing to use a pseudonym in the publishable product; myself and my supervisor are the only ones who will be aware of your identity. section a: background . can you please tell me about your job here at the university? a. probe: what were the requirements for applying to this position? how long have you been in this position? what is your professional background? educational background? . have you worked on projects related to sustainability before? a. [have you only worked on projects related to sustainability in the university setting?] b. probe: where (or how) else have you practically applied this frame? . can you please tell me about your role in the implementation of the multi-use bottle project? a. [are you involved with allocating funds to the multi-use bottle project (or budgeting)? with the marketing/public announcements work? with the logistics? etc.] section b: sustainability and differentiation . of the two scenarios, which would you say you are more likely to accept: a. a highly-effective sustainability initiative that also saves the university a good deal of money ($ million) b. a highly-effective sustainability initiative that requires an investment by the university of a good deal of money ($ million) probe: please explain, why you answered in the way that you did? . what other initiatives have you supported at the university of ottawa? denied? what were the reasons for these discrepancies? . the ‘destination ’ document mentions sustainability as a ‘strength’ of the university of ottawa. why do you think the university is making this claim? do you agree with it? why? a. [have we gotten ‘better’ at sustainability during your time here? how? what were the steps taken?] . the university of ottawa’s ‘strategic mandate agreement ( - )’ document states that academically, we do well in the field of environmental protection and would like to continue to grow in this area of study. does this mandate blend into/inspire more movement in the practical acceptance of sustainability initiatives? who makes these connections between academic goals and practical implication? a. would you say more sustainability initiatives are accepted than denied? what needs to be at the core of the project for it to succeed? b. would you say that the sustainability initiatives accepted by the university of ottawa have to promise an economic return from the start? [do all sustainability initiatives need to be ‘economically neutral’?] . ‘destination ’ puts an emphasis on student experience, stating that it is important for students to have regular interactions with professors, staff and other students as it ‘enriches the learning environment inside the classroom and out’. for administration, would you say that the actor initiating the sustainability project matters? in other words, are you more likely to accept an initiative that is designed by a student? why? section c: reputation . in your opinion, do sustainability initiatives augment the university’s reputation? how? if you are in the marketing of these initiatives, how do we market them? how do we know who to impress/who cares? a. [is it the government who cares? external donors? what are the avenues through which these initiatives are presented (and why these avenues?)?] . do you have a role in measuring or reporting sustainability at the university of ottawa? if so, which ranking systems are you familiar with? where are the areas of concern, that may be addressed (ex. reducing our carbon footprint, zero waste etc.)? a. [why do we care about the ranking systems? do they help us attract students? save on taxes? receive honourable mention in world renowned media venues? etc.] . do you think that the university of ottawa will continue to implement sustainability initiatives, even now that that there is more talk of cutbacks at the university? if so, why would we choose to spend in this area when money is tight? . the university of ottawa's sustainability models are outdated (last edited in the s). in your opinion, do you think this matters? a. is it a ‘known' process by which sustainability initiatives are passed? [is there a trust amongst the administrators that they know the process?] b. is there the freedom for administrators to accept projects that they believe in? c. would you say that there are any ‘institutional safeguards’ in passing these initiatives? [for example, through the stages of presenting these initiatives to so many people in various departments?] d. what are the strengths of our current sustainability policy? where do you think we can improve? do you have any practical examples you can think of? [probe for details] section d: mbp . what do you hope will result from the implementation of the mbp? do you have any concerns about the project or its implementation? . in your opinion, is the mbp going to improve or help the university’s reputation? a. how? why? through which avenues? . in your opinion, do you think the mbp will succeed? a. do you think students will like this provision? do you think it will be well- received by the because it has never been done before? . in your opinion, do you think that the mbp is a good idea for the university? . in your opinion, do you see the mbp causing any problems for the university? . [for defy the conventional respondents only] do you think that the mbp will receive interest and funding from external donors? a. why? who are the people you will target? are they only those interested in sustainability, or will you frame this initiatives more broadly? if so, how? which frames? will we only look at the current tabaret society, or try to reach out? if you are reaching out, how do you plan to do that? . other than yourself, do you know anyone else that influenced decision-making around this initiative, and would be willing to sit for an interview? a. i heard that there were economic constraints at the university of ottawa that hindered the implementation of the mbp, is this true? or did the administration feel that it was not worth putting more money into (breaking even)? were their any policies, goals or mandates that pushed or constrained the implementation of this project? . any final thoughts that you would like to add? appendix : this is the bottle that will be presented to the ceo of desjardins on june , . if the company likes it, they will continue to purchase h ottawa bottles for all of their branches to give to clients. in addition to this, desjardins did some rebranding which included a commitment to social entrepreneurs such as myself. the h ottawa bottle will be given out to inform new and old clients, as well as the community more broadly at certain events, of their new allegiance appendix : these are some pictures from the h ottawa instagram page. moving forward, i want to continue to conceptualize this project as an inclusive ottawa initiative that the community at large can get behind. appendix : following the theme of the instagram, this generic bottle now comes with a cityscape of ottawa. the intention here is to engage the ottawa community more broadly. this screen will be printed on all bottles for the bluesfest event. self-reported needs and experiences of people with dementia living in nursing homes: a scoping review shiells, k., pivodic, l., holmerova, i., & van den block, l. ( ). self-reported needs and experiences of people with dementia in nursing homes: a scoping review. aging and mental health. https://doi.org/ . / . . publisher's pdf, also known as version of record license (if available): cc by-nc-nd link to published version (if available): . / . . link to publication record in explore bristol research pdf-document this is the final published version of the article (version of record). it first appeared online via taylor and francis at https://www.tandfonline.com/doi/full/ . / . . . please refer to any applicable terms of use of the publisher. university of bristol - explore bristol research general rights this document is made available in accordance with publisher policies. please cite only the published version using the reference above. full terms of use are available: http://www.bristol.ac.uk/red/research-policy/pure/user-guides/ebr-terms/ https://doi.org/ . / . . https://doi.org/ . / . . https://research-information.bris.ac.uk/en/publications/c c c - fb- c -b dc- cf d b https://research-information.bris.ac.uk/en/publications/c c c - fb- c -b dc- cf d b full terms & conditions of access and use can be found at https://www.tandfonline.com/action/journalinformation?journalcode=camh aging & mental health issn: - (print) - (online) journal homepage: https://www.tandfonline.com/loi/camh self-reported needs and experiences of people with dementia living in nursing homes: a scoping review kate shiells, lara pivodic, iva holmerová & lieve van den block to cite this article: kate shiells, lara pivodic, iva holmerová & lieve van den block ( ): self- reported needs and experiences of people with dementia living in nursing homes: a scoping review, aging & mental health, doi: . / . . to link to this article: https://doi.org/ . / . . © the author(s). published by informa uk limited, trading as taylor & francis group published online: jun . submit your article to this journal article views: view crossmark data https://www.tandfonline.com/action/journalinformation?journalcode=camh https://www.tandfonline.com/loi/camh https://www.tandfonline.com/action/showcitformats?doi= . / . . https://doi.org/ . / . . https://www.tandfonline.com/action/authorsubmission?journalcode=camh &show=instructions https://www.tandfonline.com/action/authorsubmission?journalcode=camh &show=instructions http://crossmark.crossref.org/dialog/?doi= . / . . &domain=pdf&date_stamp= - - http://crossmark.crossref.org/dialog/?doi= . / . . &domain=pdf&date_stamp= - - self-reported needs and experiences of people with dementia living in nursing homes: a scoping review kate shiellsa , lara pivodicb, iva holmerov�aa and lieve van den blockb acentre of expertise in longevity and long-term care, faculty of humanities, charles university, prague, czech republic; bend-of-life care research group, vrije universiteit brussel (vub) and ghent university, brussels, belgium abstract objectives: with rates of dementia continuing to rise, the impetus on improving care for people with dementia is growing. unmet needs of people with dementia living in nursing homes have been linked with worsening neuropsychiatric symptoms, higher levels of depression, and reduced quality of life. furthermore, proxy accounts exploring the needs of people with dementia have fre- quently been shown to be unreliable. therefore, this literature review aims to explore the self- reported needs and experiences of people with dementia in nursing homes. method: a scoping review of the literature was carried out using the databases pubmed and psycinfo to search for relevant articles according to prisma guidelines. search terms were designed to include both quantitative and qualitative study designs. thematic synthesis was used to categorise findings into themes related to self-reported needs and experiences. results: a total of articles met the eligibility criteria. an analysis of study characteristics revealed more than half of studies used a qualitative design. thematic synthesis resulted in eight themes: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate envir- onment, meaningful relationships, support with grief and loss, end-of-life care. conclusion: whilst the voice of people with dementia has previously been neglected in research, this review has shown that people with dementia in nursing homes are able to describe their experiences and communicate their needs. the findings in this review have provided a contribu- tion towards guiding evidence-based practice that is tailored to the needs of nursing home resi- dents with dementia. article history received december accepted may keywords dementia; experiences; long-term care; nursing home; subjective needs introduction historically, people with dementia, and specifically those living in nursing homes, have been excluded from partici- pation in research (davies et al., ). exclusion from research can be linked with the dominance of the biomed- ical model and an emphasis on developing pharmaco- logical treatments for dementia. consequently, researchers have frequently pursued a positivist-based paradigm of research, with participants playing a passive role in clinical trials (bond & corner, ). furthermore, involving people with dementia in qualitative research has commonly been disregarded because of the association of dementia with ‘dwindling personhood’ (moore & hollett, ), and the view that associated communication and memory prob- lems may affect an individual’s ability to share their experi- ences (nygård, ). in recent years, research into the needs and experiences of people with dementia living in nursing homes has been recognised as an increasingly valuable field (milne, ). in the united kingdom, approximately % of people living in nursing homes have dementia, which is often in the moder- ate to severe stages (prince et al., ). unmet needs of people with dementia living in nursing homes have been linked with worsening neuropsychiatric symptoms of dementia (cohen-mansfield, dakheel-ali, marx, thein, & regier, ), higher levels of depression (hancock, woods, challis, & orrell, ), and reduced quality of life (hoe, hancock, livingston, & orrell, ). however, research in this field has frequently relied on reports from family mem- bers and staff, despite evidence to suggest that proxy accounts are not always reliable (crespo, bernaldo de quir�os, g�omez, & hornillos, ; orrell et al., ). therefore, elicit- ing the voice of people with dementia in research aimed at exploring their needs is essential for the production of evi- dence-based guidelines for care delivery in nursing homes, paving the way for improved quality of life amongst people with dementia (sabat, ). although literature reviews exploring the self-reported needs of people with dementia have been carried out, these have focussed on those living in the community (van der roest et al., ; von kutzleben, schmid, halek, holle, & bartholomeyczik, ). one review by cadieux, garcia, and patrick ( ) looked at the needs of people with dementia in long-term care, using both proxy and subject- ive accounts. their search included quantitative and quali- tative studies published between and . however, their search string did not include specific terms to identify subjective accounts, and consequently, some articles exploring subjective needs and experiences may have been overlooked. the aim of this scoping review therefore, is to contact kate shiells kate.shiells@fhs.cuni.cz � the author(s). published by informa uk limited, trading as taylor & francis group this is an open access article distributed under the terms of the creative commons attribution-noncommercial-noderivatives license (http://creativecommons.org/licenses/by-nc- nd/ . /), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. aging & mental health https://doi.org/ . / . . http://crossmark.crossref.org/dialog/?doi= . / . . &domain=pdf&date_stamp= - - http://orcid.org/ - - - http://orcid.org/ - - - http://creativecommons.org/licenses/by-nc-nd/ . / http://creativecommons.org/licenses/by-nc-nd/ . / https://doi.org/ . / . . http://www.tandfonline.com explore the self-reported needs and experiences of people with dementia in nursing homes. method scoping review methodology due to the broad nature of the research question and the lack of current research in this area, the scoping review was selected as the appropriate methodology for this study (peters et al., ). a scoping review has been described as a form of ‘knowledge synthesis’ and involves examining the nature and extent of research activity, which is import- ant for determining gaps in the literature and directing future research (colquhoun et al., ). for the purposes of this review, the six-stage framework as described by arksey and o’malley ( ) and adapted by levac, colquhoun, and o’brien ( ) has been used to guide the process. search strategy search strings were discussed amongst the authors (k.s & l.p) and with a librarian. they were then organised accord- ing to the picos model for constructing search strings for mixed-methods reviews (methley, campbell, chew-graham, mcnally, & cheraghi-sohi, ). the databases pubmed and psycinfo were used in the search, which took place during february and march . the search was initially narrowed to include articles published between january and february in english, french or czech, which resulted in a total of articles. table shows the exact search string used for each database and the number of articles found. inclusion and exclusion criteria the inclusion and exclusion criteria were initially decided upon by the authors (k.s & l.p) and reviewed during the search process by all authors. articles of both quantitative and qualitative study designs exploring the self-reported needs and/or experiences of people with a diagnosis of any type of dementia living in a long-term care facility, such as a nursing home or residential home, were included. those only involving participants with dementia living at home or in hospital were rejected, as well as studies involv- ing only participants with mild cognitive impairment (mci) or probable dementia. studies where participants already had a confirmed diagnosis of dementia were included, as well as those where researchers assessed cognitive impair- ment using an appropriate test. those studies using only proxy accounts or observational methods were not included, as these did not seek to obtain views of people with dementia themselves. finally, conference reports, edi- torials, books, protocols and dissertations were rejected. the screening process was carried out in accordance with the preferred reporting items for systematic reviews and meta-analyses (prisma) guidelines (liberati et al., ), as shown in figure . critical appraisal critical appraisal in mixed methods reviews is currently a developing area. the mixed methods appraisal tool (mmat) (pace et al., ) was used as a general guide to assess the quality of articles of all study designs and to exclude any articles with fatal flaws. no studies were con- sidered to warrant exclusion on this basis alone. data analysis a convergent qualitative synthesis was carried out, ena- bling the transformation of both quantitative and qualita- tive data into qualitative findings (pluye & hong, ). in order to transform data, thematic synthesis as described by thomas and harden ( ) was used. this involved firstly coding data inductively, according to both the category of needs and the category of experiences. for instance, a number of participants made reference to being bored and to repetitive days, and these topics formed initial codes under the category of experiences. in the second step, similar codes were merged into sub-themes wherever pos- sible. in this case, codes were categorised into the sub- theme ‘boredom and monotony’. the same process was undertaken according to the category of needs. the final stage of thematic synthesis requires the devel- opment of ‘analytical themes’, which address the research question directly. in this example, two authors (k.s & l.p) discussed, developed and sorted sub-themes to form the overarching analytical theme ‘activities’. wherever possible, table . exact search strings used for each database and number of articles found. database search terms records identified pubmed (“nursing homes”[mesh] or “residential facilities”[mesh] or “long-term care”[mesh] or “nursing home�”[title/abstract] or “residential facilities”[title/abstract] or “long-term care”[title/abstract]) and (“dementia”[mesh] or “dementia”[title/abstract] or “people with dementia”[title/abstract]) and (“self report”[mesh] or “self report�”[all fields] or “subjective”[all fields] or “surveys and questionnaires”[mesh] or “survey�” or “questionnaire�”[all fields] or “trial” [all fields] or “interviews”[all fields] or “phenomenological”[all fields] or “qualitative research”[mesh]) and (“experience�”[all fields] or “health services needs and demand”[mesh] or “quality of life”[mesh] or “quality of life”[all fields] or “care needs”[all fields] or “wellbeing”[all fields]) psycinfo (mjmainsubject.exact(“nursing homes”) or mjmainsubject.exact(“residential care institutions”) or mjmainsubject.exact(“long term care”) or ab(“nursing home�”) or ab(“residential facility”) or ab(“long term care”)) and (mainsubject.exact.explode(“dementia”) or ab(“dementia”) or ab(“people with dementia”)) and (mainsubject.exact.explode(“self-report”) or “self report�” or “subjective” or mjmainsubject.exact(“surveys”) or mainsubject.exact(“questionnaires”) or “survey�” or “questionnaire�” or mjmainsubject.exact("interviews") or “interview�” or “trial” or “phenomenological” or mainsubject.exact.explode(“qualitative research”)) and (mjmainsubject.exact(“experiences (events)”) or mjmainsubject.exact(“health service needs”) or “care need�” or mainsubject.exact.explode(“quality of life”) or “quality of life” or mainsubject.exact.explode(“well being”) or “well being”) total number of records k. shiells et al. direct quotes from participants were used for data analysis, rather than the authors’ interpretation of what participants had said (van leeuwen et al., ). results study characteristics a total of studies were included in the final synthesis. the most commonly stated aims were to explore partici- pants’: experiences (n ¼ ); quality of life (n ¼ ); per- spectives (n ¼ ); perceptions (n ¼ ); preferences (n ¼ ); needs (n ¼ ); views (n ¼ ); self-report (n ¼ ); wellbeing (n ¼ ); priorities (n ¼ ); requirements (n ¼ ); and feelings (n ¼ ). twenty-eight studies used a qualitative design, eight studies used a quantitative design, and five studies used mixed methods. of the qualitative studies, the majority used interviews (n ¼ ), including semi-struc- tured and unstructured or conversational interviews, and one study used focus groups. of the quantitative studies, five were randomised controlled trials. a number of stud- ies used various methods to collect additional data, including: proxy interviews or focus groups with family or staff (n ¼ ); observations (n ¼ ); proxy scale ratings or questionnaires completed by family or staff (n ¼ ); and data from medical notes (n ¼ ). a small number of stud- ies (n ¼ ) used stimulus materials, such as photos, sym- bols or talking mats to aid participants’ communication during interviews. finally, details about participants’ type of dementia were only described in a small number of studies (n ¼ ), whilst severity of dementia was more commonly described (n ¼ ), with approximately half of studies specifying that they included people with severe dementia (n ¼ ). in table , we provide a summary of the individual studies. themes eight themes resulted from thematic synthesis: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate environment, meaningful relationships, support with grief and loss, end-of-life care. table shows the sub-themes according to both experiences and needs for each of the eight analytical themes. activities one of the most commonly occurring experiences of resi- dents with dementia was boredom, with synonymous expressions such as ‘monotonous’ days (harmer & orrell, ) and ‘lack of stimulation’ (aggarwal et al., ) also conveyed. the effects of boredom were spoken about by one resident who said: ‘i get bored here [ … ] i feel like throwing something at them’ (clare, rowlands, bruce, surr, & downs, ). participants discussed a number of unstructured activities they enjoyed, such as crosswords, playing instruments, jigsaws, reading and knitting (harmer & orrell, ; jonas-simpson & mitchell, ; murphy, tester, hubbard, downs, & macdonald, ). however, many participants wished for ‘more social interaction’ (popham & orrell, ), and said that they take part in articles identified through database search n= articles identified through reference lists n= articles after duplicates removed n= abstracts screened n= articles excluded n= full-text articles assessed n= full-text articles excluded n= reasons: -only observations or proxy accounts used (n= ) -not focusing on needs/experiences (n= ) -not possible to separate relevant data (n= ) -did not include people with dementia (n= ) -data collection did not take place in a nursing home (n= ) articles included in thematic synthesis n= figure . search flowchart in accordance with prisma guidelines. aging & mental health ta b le . su m m ar y of ar ti cl es us ed in th em at ic sy n th es is . a ut h or /y ea r/ c ou n tr y a im re se ar ch ty p e n um b er & ty p e of fa ci lit y st ud y d es ig n & m et h od s st ud y p op ul at io n th em es a g g ar w al et al . ( ) u k to ex p lo re h ow p eo p le w it h d em en ti a an d th ei r re la ti ve s ex p er ie n ce d em en ti a an d to fin d ou t h ow th ey p er ce iv e an d re ce iv e ca re p ro vi si on . q ua lit at iv e re si d en ti al ca re se tt in g s (n um b er un kn ow n ). ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s us in g st im ul us m at er ia ls su ch as p h ot os an d ex p re ss io n ca rd s. re si d en ts at va ri ou s st ag es of a lz h ei m er ’s d is ea se . -a ct iv it ie s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss ba rt le tt ( ) u k to ex p lo re h ow m en w it h d em en ti a ex p er ie n ce , an d d ea l w it h , n ur si n g h om e lif e. q ua lit at iv e sp ec ia lis t d em en ti a ca re w in g of a n ur si n g h om e. ph en om en ol og ic al ca se st ud y w it h an un st ru ct ur ed in te rv ie w . ‘m r br ow n ’-a re si d en t w it h a lz h ei m er ’s d is ea se . -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s ba ue r et al . ( ) a us tr al ia to ex p lo re re si d en ts ’ p er ce p ti on s of th e n ee d s an d b ar ri er s to th e ex p re ss io n of se xu al it y in lo n g - te rm ca re . q ua lit at iv e si x lo n g -t er m ca re fa ci lit ie s, in cl ud in g h ig h , lo w an d m ix ed ca re fa ci lit ie s. n at ur al is ti c in q ui ry w it h se m i- st ru ct ur ed in te rv ie w s. fi ve re si d en ts w it h a d ia g n os is of d em en ti a in it s ea rl y st ag es . -m ea n in g fu l re la ti on sh ip s c ah ill an d d ia z- po n ce ( ) ir el an d to as ce rt ai n if si m ila ri ti es or d iff er en ce s ex is t in p er ce p ti on s of q ua lit y of lif e am on g st n ur si n g h om e re si d en ts w it h d iff er en t le ve ls of co g n it iv e im p ai rm en t. q ua lit at iv e th re e n ur si n g h om es . ex p lo ra to ry /d es cr ip ti ve st ud y us in g in -d ep th , se m i- st ru ct ur ed in te rv ie w s. re si d en ts w it h a m ea n m m se sc or e of . . -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss c as ey et al . ( ) a us tr al ia to d es cr ib e n ur si n g h om e re si d en ts ’ p er ce p ti on s of th ei r fr ie n d sh ip n et w or ks us in g so ci al n et w or k an al ys is , an d to co n tr ib ut e to th eo ry re g ar d in g re si d en t fr ie n d sh ip sc h em a, n et w or k st ru ct ur e, an d co n n ec ti on s b et w ee n n et w or k ti es an d so ci al su p p or t. m ix ed m et h od s d em en ti a sp ec ifi c u n it in on e n ur si n g h om e. so ci al n et w or k an al ys is (s n a ) m et h od s: (i) re si d en t se lf- re p or t st ru ct ur ed in te rv ie w s w it h op en q ue st io n s w h er e re se ar ch er s al so sh ow ed p ar ti ci p an ts p h ot os of co - re si d en ts to id en ti fy fr ie n d s; (ii ) se lf- re p or ts on n on fa m ily ob je ct iv e so ci al su p p or t us in g th e lu b b en so ci al n et w or k sc al e- (l sn s- ) fr ie n d sh ip s su b -s ca le ; (ii i) su b je ct iv e re p or ts of so ci al is ol at io n m ea su re d w it h th e fr ie n d sh ip sc al e. re si d en ts w it h m ild to se ve re d em en ti a, ac co rd in g to th e g lo b al d et er io ra ti on sc al e (g d s) . -m ea n in g fu l re la ti on sh ip s c h un g et al . ( ) u sa to ex p lo re d em en ti a p at ie n ts ’ ex p er ie n ce s of a m ed ia p re se n ta ti on in cl ud in g im ag es of n at ur e. m ix ed m et h od s o n e lo n g -t er m n ur si n g fa ci lit y. ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s ex p lo ri n g p ar ti ci p an ts ’ vi ew s on a d v d se t of n at ur e sc en es . p ar ti ci p an ts w it h a d ia g n os is of m ild -s ev er e d em en ti a b as ed on th e d ia g n os ti c an d st at is ti ca l m an ua l of m en ta l d is or d er s (d sm -i v ). -a ct iv it ie s -r em in is ce n ce c la re et al . ( ) u k to ex p lo re th e su b je ct iv e ex p er ie n ce of lif e w it h d em en ti a in re si d en ti al ca re fr om th e p er sp ec ti ve of th e p er so n w it h d em en ti a, an d to un d er st an d th e p sy ch ol og ic al im p ac t of b ei n g in th is si tu at io n . q ua lit at iv e te n ca re h om es , sp ec ia lis ed fo r p eo p le w it h d em en ti a or m ix ed n ee d s. ex p lo ra to ry st ud y w it h in te rp re ta ti ve p h en om en ol og ic al an al ys is of un st ru ct ur ed co n ve rs at io n s b et w ee n re se ar ch er s an d p eo p le w it h d em en ti a. d at a fr om re si d en ts w it h a m ea n m m se of . w as in cl ud ed in an al ys is . -a ct iv it ie s -r em in is ce n ce -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss c oh en -m an sf ie ld et al . ( ) is ra el to ex p lo re th e ro le -i d en ti ty of re si d en ts w it h d em en ti a, an d th e p ot en ti al fo r ut ili si n g th ei r en d ur in g se n se of se lf- id en ti ty fo r en h an ci n g th ei r q ua lit y of lif e. q ua n ti ta ti ve tw o n ur si n g h om es . ex p lo ra to ry st ud y us in g cl os e- en d ed q ue st io n n ai re s. re si d en ts w it h va ri ou s ty p es of d em en ti a at th e m ild -s ev er e st ag e. -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t c on ra d ss on et al . ( ) sw ed en to ev al ua te th e ef fe ct s of a h ig h - in te n si ty fu n ct io n al ex er ci se p ro g ra m m e on d ep re ss iv e q ua n ti ta ti ve n in e re si d en ti al ca re fa ci lit ie s, fo ur of w h ic h c lu st er -r an d om is ed co n tr ol le d tr ia l w h er e p ar ti ci p an ts ei th er re ce iv ed th e in te rv en ti on in th e fo rm of a re si d en ts w it h m ild -m od er at e d em en ti a ac co rd in g to th e m m se . -a ct iv it ie s (c on ti nu ed ) k. shiells et al. ta b le . c on ti n ue d . a ut h or /y ea r/ c ou n tr y a im re se ar ch ty p e n um b er & ty p e of fa ci lit y st ud y d es ig n & m et h od s st ud y p op ul at io n th em es sy m p to m s an d p sy ch ol og ic al w el lb ei n g am on g ol d er p eo p le d ep en d en t in ac ti vi ti es of d ai ly liv in g an d liv in g in re si d en ti al ca re fa ci lit ie s. h ad un it s fo r p eo p le w it h d em en ti a. h ig h -i n te n si ty fu n ct io n al w ei g h t- b ea ri n g ex er ci se p ro g ra m m e (n ¼ ), or a p ro g ra m m e of ac ti vi ti es p er fo rm ed w h ils t si tt in g in th e co n tr ol g ro up (n ¼ ). o ut co m e m ea su re s: d ep re ss iv e sy m p to m s, m ea su re d b y th e g er ia tr ic d ep re ss io n sc al e -i te m ve rs io n (g d s- ), an d p sy ch ol og ic al w el lb ei n g , m ea su re d b y th e ph ila d el p h ia g er ia tr ic c en te r m or al e sc al e (p g c m s) . c oo ke et al . ( ) a us tr al ia to in ve st ig at e th e ef fe ct of liv e m us ic on q ua lit y of lif e an d d ep re ss io n am on g st ol d er p eo p le w it h d em en ti a. q ua n ti ta ti ve tw o ag ed ca re fa ci lit ie s p ro vi d in g h ig h an d lo w ca re . ra n d om is ed co n tr ol le d cr os s- ov er tr ia l. pa rt ic ip an ts re ce iv ed th e liv e m us ic in te rv en ti on (n ¼ ; at cr os s- ov er n ¼ ) or at te n d ed a re ad in g g ro up if in th e co n tr ol g ro up (n ¼ ; at cr os s- ov er n ¼ ). o ut co m e m ea su re s: se lf- re p or te d q ua lit y of lif e, m ea su re d b y th e d em en ti a q ua lit y of li fe (d q o l) q ue st io n n ai re , an d d ep re ss io n , m ea su re d w it h th e g er ia tr ic d ep re ss io n sc al e (g d s) . re si d en ts w it h a d ia g n os is of ea rl y- m id st ag e d em en ti a or p ro b ab le d em en ti a ac co rd in g to th e m m se or d sm -i v , an d a d oc um en te d h is to ry of ag it at io n or ag g re ss io n w it h in th e la st m on th . m ea n m m se sc or e w as . . -a ct iv it ie s c oo n ey et al . ( ) ir el an d to un d er st an d p eo p le w it h d em en ti a, st af f an d re la ti ve s’ p er sp ec ti ve s on re m in is ce n ce , it s im p ac t on th ei r liv es an d ex p er ie n ce of ca re an d ca re g iv in g . q ua lit at iv e fo ur lo n g -t er m ca re se tt in g s. g ro un d ed th eo ry st ud y us in g un st ru ct ur ed co n ve rs at io n s w it h re si d en ts . el ev en re si d en ts w it h a m ea n m m se sc or e of . . -r em in is ce n ce -m ea n in g fu l re la ti on sh ip s d e bo er et al . ( ) n et h er la n d s to co m p ar e q ua lit y of ca re , q ua lit y of lif e an d re la te d ou tc om es in g re en ca re fa rm s, re g ul ar sm al l- sc al e liv in g fa ci lit ie s an d tr ad it io n al n ur si n g h om es fo r p eo p le w it h d em en ti a. q ua n ti ta ti ve th re e ty p es of n ur si n g h om es : g re en ca re fa rm s (n ¼ ) ; re g ul ar sm al l- sc al e liv in g fa ci lit ie s (n ¼ ) ; tr ad it io n al n ur si n g h om es (n ¼ ) . c ro ss -s ec ti on al d es ig n w it h d at a co lle ct ed on se lf- re p or te d q ua lit y of lif e us in g th e q ua lit y of li fe - a lz h ei m er ’s d is ea se sc al e (q ol -a d ). re si d en ts w it h a fo rm al d ia g n os is of d em en ti a an d a m ea n s- m m se sc or e of . . -a p p ro p ri at e en vi ro n m en t d oy le et al . ( ) u sa to ex p lo re th e n ot io n of g en er at iv it y am on g el d er s w it h d em en ti a liv in g in lo n g -t er m ca re se tt in g s q ua lit at iv e o n e lo n g -t er m ca re d em en ti a re si d en ce . et h n og ra p h ic st ud y us in g fo rm al in te rv ie w s w it h re si d en ts . th re e re si d en ts : -d an ie l- d ia g n os is of le w y bo d ie s d em en ti a, m m se . -s am an th a- d ia g n os is of m od er at e, n on -s p ec ifi c d em en ti a, m m se . -d on n a- d ia g n os is of se ve re ea rl y on se t d em en ti a, m m se . -m ai n ta in in g p re vi ou s ro le s -m ea n in g fu l re la ti on sh ip s d r€ o es et al . ( ) n et h er la n d s to ex p lo re to w h at d eg re e d oe s w h at p eo p le w it h d em en ti a in n ur si n g h om es an d m ee ti n g ce n tr es co n si d er im p or ta n t to th ei r q ua lit y of lif e co rr es p on d w it h h ow th ei r ca re rs fe el ab ou t w h at is im p or ta n t fo r th e q ua lit y q ua lit at iv e fo ur w ar d s in th re e n ur si n g h om es . ex p lo ra to ry st ud y w it h in te rv ie w s w it h re si d en ts . re si d en ts w it h m ild to m od er at el y se ve re d em en ti a, ac co rd in g to th e g d s. -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss (c on ti nu ed ) aging & mental health ta b le . c on ti n ue d . a ut h or /y ea r/ c ou n tr y a im re se ar ch ty p e n um b er & ty p e of fa ci lit y st ud y d es ig n & m et h od s st ud y p op ul at io n th em es of lif e of th e p eo p le w it h d em en ti a th ey ta ke ca re of . g eo rg e an d h ou se r ( ) u sa to ex p lo re th e su b je ct iv e ex p er ie n ce of re si d en ts an d st af f of a sk ill ed - n ur si n g d em en ti a sp ec ia l ca re un it w h o p ar ti ci p at ed in ti m es lip s. q ua lit at iv e o n e sk ill ed -n ur si n g d em en ti a sp ec ia l ca re un it in a co n ti n ui n g ca re re ti re m en t co m m un it y. ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s w it h re si d en ts d ur in g th e fin al w ee k of th e ti m es lip s in te rv en ti on . te n re si d en ts w it h a d ia g n os is of d em en ti a at th e m od er at e- se ve re st ag e an d a m ea n m m se sc or e of . . -a ct iv it ie s g od w in an d po la n d ( ) u k to ex am in e th e se lf- ex p er ie n ce of p eo p le w it h m od er at e to ad va n ce d d em en ti a. q ua lit at iv e th re e lo n g -t er m re si d en ti al or n ur si n g ca re h om es . in te rp re ta ti ve p h en om en ol og ic al an al ys is ap p ro ac h us in g se m i- st ru ct ur ed em p at h et ic in te rv ie w s. te n re si d en ts w it h va ry in g d ia g n os es of d em en ti a, al l at m od er at e to ea rl y st ag es of ad va n ce d d em en ti a. -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -s up p or t w it h g ri ef & lo ss g oo d m an et al . ( ) u k to ex p lo re h ow ol d er p eo p le w it h d em en ti a d is cu ss th ei r p ri or it ie s an d p re fe re n ce s fo r en d -o f- lif e ca re . q ua lit at iv e si x ca re h om es . ex p lo ra to ry st ud y us in g se m i- st ru ct ur ed , co n ve rs at io n al in te rv ie w s. re si d en ts w it h d em en ti a, as re co rd ed in th ei r ca re n ot es . -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss -e n d -o f- lif e ca re g ra n eh ei m an d ja n ss on ( ) sw ed en to ill um in at e th e m ea n in g of liv in g w it h d em en ti a an d d is tu rb in g b eh av io ur , as n ar ra te d b y th re e p er so n s ad m it te d to a re si d en ti al h om e. q ua lit at iv e re si d en ti al h om e fo r p eo p le w it h d em en ti a an d co m p lic at io n s th at m ai n ly ta ke th e fo rm of d is tu rb in g b eh av io ur . in te rp re ta ti ve h er m en eu ti c an d p h en om en ol og ic al an al ys is ap p ro ac h w it h co n ve rs at io n al in te rv ie w s w it h ea ch re si d en t. th re e re si d en ts : -j oh n -d ia g n os is of va sc ul ar d em en ti a, m m se . -a n n ie -d ia g n os is of a lz h ei m er ’s d is ea se , m m se . -p h ili p -d ia g n os is of a lz h ei m er ’s d is ea se , m m se . a ll th re e al so ex p er ie n ce d d is tu rb in g b eh av io ur . -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss g uz m � an -g ar c� ı a et al . ( ) u k to in ve st ig at e th e ef fe ct of in tr od uc in g a d an ce -b as ed p sy ch om ot or in te rv en ti on us in g d an z� o n (l at in b al lr oo m ) fo r p eo p le w it h d em en ti a in ca re h om es . q ua lit at iv e tw o ca re h om es . pi lo t st ud y us in g g ro un d ed th eo ry m et h od ol og y. in te rv ie w s w er e ca rr ie d ou t tw ic e w it h re si d en ts af te r si x w ee ks of at te n d in g th e d an z� o n in te rv en ti on se ve n re si d en ts d ia g n os ed w it h va ry in g ty p es of m ild -s ev er e d em en ti a, w it h a m ea n m m se sc or e of . -a ct iv it ie s h ar m er an d o rr el l ( ) u k to ex p lo re co n ce p ts of m ea n in g fu l ac ti vi ty , as d ef in ed b y ol d er p eo p le w it h d em en ti a liv in g in ca re h om es , st af f an d fa m ily ca re rs . q ua lit at iv e tw o h om es p ro vi d in g tr ad it io n al re si d en ti al ca re an d on e h om e p ro vi d in g d em en ti a re si d en ti al ca re . ex p lo ra to ry st ud y w it h th re e fo cu s g ro up s w it h p ar ti ci p an ts w it h d em en ti a us in g p ic tu re s of d iff er en t ac ti vi ti es to fa ci lit at e d is cu ss io n . in d iv id ua ls w it h a m ild -s ev er e d ia g n os is of d em en ti a as d ef in ed b y th e d ia g n os ti c an d st at is ti ca l m an ua l of m en ta l d is or d er s (d sm ), an d w it h a m ea n m m se sc or e of . -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -r em in is ce n ce -m ea n in g fu l re la ti on sh ip s h as la m et al . ( ) u k to in ve st ig at e th e im p ac t of g ro up re m in is ce n ce (g r) an d in d iv id ua l re m in is ce n ce (ir ) ac ti vi ti es on ol d er ad ul ts liv in g in ca re se tt in g s. q ua n ti ta ti ve sp ec ia lis ed un it s fo r p eo p le w it h d em en ti a in re si d en ti al ca re h om es . ra n d om is ed co n tr ol le d tr ia l w h er e p ar ti ci p an ts w er e as si g n ed to on e of th re e in te rv en ti on s: g ro up re m in is ce n ce , in d iv id ua l re m in is ce n ce , or a g ro up co n tr ol ac ti vi ty (s ki tt le s) . o ut co m e m ea su re s: h os p it al a n xi et y an d d ep re ss io n sc al e (h a d s) , q ua lit y of li fe in a lz h ei m er ’s d is ea se sc al e (q ol - a d ), li fe im p ro ve m en t sc al e, an d q ua lit y of li fe c h an g e sc al e. re si d en ts fr om sp ec ia lis ed un it s w it h a g en er al m ed ic al d ia g n os is of d em en ti a. -r em in is ce n ce h eg g es ta d et al . ( ) n or w ay to in ve st ig at e h ow lif e in n or w eg ia n n ur si n g h om es m ay af fe ct q ua lit at iv e a sp ec ia l ca re un it fo r p eo p le w it h d em en ti a fi ve re si d en ts w it h a d ia g n os is of d em en ti a at va ri ou s st ag es . -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t (c on ti nu ed ) k. shiells et al. ta b le . c on ti n ue d . a ut h or /y ea r/ c ou n tr y a im re se ar ch ty p e n um b er & ty p e of fa ci lit y st ud y d es ig n & m et h od s st ud y p op ul at io n th em es ex p er ie n ce s of d ig n it y am on g p er so n s w it h d em en ti a. in on e n ur si n g h om e, an d a g en er al un it in a se co n d n ur si n g h om e. in te rp re ta ti ve h er m en eu ti ca l an d p h en om en ol og ic al ap p ro ac h us in g fo rm al in te rv ie w s. -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss jo n as -s im p so n an d m it ch el l ( ) c an ad a to g iv e vo ic e to ex p re ss io n s of q ua lit y of lif e fo r p er so n s w h o liv e w it h d em en ti a an d w h o re si d e in lo n g -t er m ca re , p ri m ar ily on lo ck ed co g n it iv e su p p or t un it s. q ua lit at iv e lo ck ed co g n it iv e su p p or t un it s an d on e p h ys ic al su p p or t un it in a lo n g - te rm ca re fa ci lit y. d es cr ip ti ve st ud y us in g se m i- st ru ct ur ed in te rv ie w s co n d uc te d al on g si d e a m us ic or ar t th er ap is t. m us ic an d ar t w as of fe re d to p ar ti ci p an ts as m ed iu m s to fu rt h er d es cr ib e th ei r q ua lit y of lif e. p ar ti ci p an ts fr om th e lo ck ed su p p or t un it s, an d on e p ar ti ci p an t fr om th e p h ys ic al su p p or t un it , al l d ia g n os ed w it h va ry in g ty p es of d em en ti a w it h m ild - se ve re im p ai rm en t. -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss ka uf m an n an d en g el ( ) g er m an y to ex am in e to m ki tw oo d ’s m od el of p sy ch ol og ic al n ee d s an d w el l- b ei n g in d em en ti a b as ed on th e se lf- re p or t of in d iv id ua ls w it h m od er at e or se ve re d em en ti a, an d to d iff er en ti at e an d el ab or at e th is m od el in th e lig h t of th e em p ir ic al q ua lit at iv e d at a. q ua lit at iv e lo n g -t er m ca re un it fo r p eo p le w it h m od er at e or se ve re d em en ti a. d ed uc ti ve -i n d uc ti ve d es ig n us in g se m i- st ru ct ur ed in te rv ie w s w it h q ue st io n s b as ed on to m ki tw oo d ’s m od el of n ee d s. re si d en ts w it h m ild -s ev er e d em en ti a an d an av er ag e m m se sc or e of . . -a ct iv it ie s -r em in is ce n ce -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss m ilt e et al . ( ) a us tr al ia to d es cr ib e th e m ea n in g of q ua lit y re si d en ti al ca re fr om th e p er sp ec ti ve of p eo p le w it h co g n it iv e im p ai rm en t an d th ei r fa m ily m em b er s. q ua lit at iv e re si d en ti al ag ed ca re fa ci lit ie s. d es cr ip ti ve st ud y w it h in -d ep th , se m i- st ru ct ur ed in te rv ie w s. re si d en ts w it h m ild -s ev er e co g n it iv e im p ai rm en t. th e m ea n n um b er of er ro rs on th e sh or t po rt ab le m en ta l st at us q ue st io n n ai re (s pm sq ) fo r p ar ti ci p an ts w as . -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s m jø ru d et al . ( ) n or w ay to in ve st ig at e th e p er so n al ex p er ie n ce of liv in g in a n ur si n g h om e ov er ti m e fr om th e p er sp ec ti ve of th e p er so n w it h d em en ti a an d to le ar n w h at m ak es lif e b et te r or w or se in th e n ur si n g h om e. q ua lit at iv e tw o sp ec ia l ca re un it s fo r p eo p le w it h d em en ti a an d re g ul ar un it s ac ro ss n ur si n g h om es . in te rp re ta ti ve p h en om en ol og ic al h er m en eu ti c ap p ro ac h w it h un st ru ct ur ed in te rv ie w s. re si d en ts w it h m ild to se ve re d em en ti a ac co rd in g to th e cl in ic al d em en ti a ra ti n g sc al e (c d r) . -a ct iv it ie s -r em in is ce n ce -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss m on ro e et al . ( ) u sa to d et er m in e if a d ia g n os is of d em en ti a in flu en ce d p ai n se lf- re p or ts an d p ai n m ed ic at io n us e in a g ro up of ve rb al ly co m m un ic at iv e n ur si n g h om e re si d en ts . q ua n ti ta ti ve lo n g -s ta y b ed s in on e n ur si n g h om e. c om p ar at iv e st ud y us in g th e se ve n q ue st io n st ru ct ur ed p ai n in te rv ie w d er iv ed fr om th e g er ia tr ic pa in m ea su re co m p ar in g ou tc om es in re si d en ts w it h an d w it h ou t d em en ti a. p ar ti ci p an ts co m p le te d th e in te rv ie w . w it h a d ia g n os is of m ild -m od er at e d em en ti a, an d w it h ou t d em en ti a. a ll p ar ti ci p an ts h ad a m in im um of on e p ai n -r el at ed d ia g n os is . -e n d -o f- lif e ca re m oy le et al . ( ) a us tr al ia to un d er st an d th e fa ct or s th at in flu en ce q ua lit y of lif e fo r p eo p le liv in g w it h d em en ti a in lo n g -t er m ca re , in cl ud in g an un d er st an d in g of h ow th ey p er ce iv ed th ey w er e va lu ed . q ua lit at iv e fo ur lo n g -t er m ca re fa ci lit ie s p ro vi d in g lo w an d h ig h ca re , as w el l as d em en ti a- sp ec ifi c ca re . pr ag m at ic , ex p lo ra to ry ap p ro ac h w it h se m i- st ru ct ur ed in te rv ie w s. re si d en ts w it h a d em en ti a d ia g n os is ac co rd in g to th e m m se an d d sm . -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s m oy le et al . ( ) a us tr al ia to d es cr ib e q ua lit y of lif e as re p or te d b y p eo p le liv in g w it h d em en ti a in lo n g -t er m ca re in te rm s of in flu en ce rs of , as w el l as th e st ra te g ie s n ee d ed , to im p ro ve q ua lit y of lif e. q ua lit at iv e fo ur ag ed ca re fa ci lit ie s. d es cr ip ti ve , ex p lo ra to ry d es ig n w it h a ca se st ud y ap p ro ac h an d st ru ct ur ed in te rv ie w s. re si d en ts w it h a d ia g n os is of va ry in g ty p es of d em en ti a, w it h m m se sc or es in th e ra n g e of - in d ic at in g m ild to m od er at e d em en ti a. -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss m ul q ue en an d c of fe y ( ) ir el an d to ex p lo re th e p re fe re n ce s of re si d en ts w it h d em en ti a fo r th ei r en d of lif e ca re , an d n ur se s’ p er ce p ti on s of th es e p re fe re n ce s. m ix ed m et h od s o n e re si d en ti al ca re fa ci lit y. n om in al g ro up te ch n iq ue w it h g ro up d is cu ss io n an d ra n ki n g of p re fe re n ce s. n om in al g ro up of si x re si d en ts w it h m ild d em en ti a an d an m m se sc or e of or ov er . -e n d -o f- lif e- ca re (c on ti nu ed ) aging & mental health ta b le . c on ti n ue d . a ut h or /y ea r/ c ou n tr y a im re se ar ch ty p e n um b er & ty p e of fa ci lit y st ud y d es ig n & m et h od s st ud y p op ul at io n th em es m ur p h y et al . ( ) u k to ob ta in th e vi ew s of fr ai l ol d er p eo p le w it h co m m un ic at io n im p ai rm en ts us in g an in n ov at iv e in te rv ie w in g m et h od s, ta lk in g m at st m . q ua lit at iv e c ar e h om es (n um b er un kn ow n ) ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s us in g th e ta lk in g m at s vi su al fr am ew or k. se ve n ol d er p eo p le w it h co m m un ic at io n d iff ic ul ti es an d a d ia g n os is of d em en ti a. -a ct iv it ie s -r em in is ce n ce -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s o ls en et al . ( ) n or w ay to ex p lo re th e p os it iv e an d n eg at iv e ex p er ie n ce s of a h ig h -i n te n si ty fu n ct io n al ex er ci se p ro g ra m in n ur si n g h om e re si d en ts w it h d em en ti a, fr om th e p er sp ec ti ve of th e re si d en ts . q ua lit at iv e o n e n ur si n g h om e. ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s. ei g h t re si d en ts w it h m ild to m od er at e d em en ti a, ac co rd in g to th e c d r. -a ct iv it ie s -f re ed om an d ch oi ce po p h am an d o rr el l ( ) u k to d et er m in e to w h at ex te n t th e ca re h om e en vi ro n m en t m et th e re q ui re m en ts of re si d en ts w it h d em en ti a in th e co n te xt of th e vi ew s of m an ag er s, fa m ily ca re rs an d st af f, an d a st an d ar d en vi ro n m en ta l as se ss m en t. m ix ed m et h od s o n e la rg e ca re h om e w it h re si d en ti al , n ur si n g an d sp ec ia lis ed d em en ti a ca re ; th re e n ur si n g h om es , tw o of w h ic h h ad sp ec ia lis ed d em en ti a b ed s; an d on e re si d en ti al h om e w it h n o sp ec ia lis ed p ro vi si on . ex p lo ra to ry , ev al ua ti ve st ud y w it h fiv e fo cu s g ro up s w it h re si d en ts us in g op en -e n d ed q ue st io n s. tw en ty -f iv e p ar ti ci p an ts w it h a d ia g n os is of d em en ti a at th e m ild - se ve re st ag e an d a m ea n m m se sc or e of . . -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s po w er s an d w at so n ( ) u sa to ob ta in an un d er st an d in g of re si d en ts ’ sp ir it ua l or ie n ta ti on s, p ra ct ic es an d p re fe re n ce s; to ex am in e fa m ily m em b er an d n h st af f p er ce p ti on s of sp ir it ua l n ur tu ra n ce an d su p p or t fo r re si d en ts ; an d to an al ys e in st it ut io n al re so ur ce s fo r an d ap p ro ac h es to as se ss in g an d m ee ti n g re si d en ts ’ sp ir it ua l n ee d s. m ix ed m et h od s th re e n ur si n g h om es p ro vi d in g ca re fo r p eo p le of al l re lig io us fa it h s, b ut w it h m ai n ly th e fo llo w in g fa it h - b as ed af fil ia ti on s: c at h ol ic , je w is h , an d pr ot es ta n t. c on cu rr en t n es te d st ra te g y in w h ic h th e p re d om in an t m et h od w as q ua lit at iv e se m i- st ru ct ur ed in te rv ie w s. re si d en ts w it h m ild -s ev er e d em en ti a ac co rd in g to th e c og n it iv e pe rf or m an ce sc al e (c ps ). -a ct iv it ie s -s up p or t w it h g ri ef an d lo ss se rr an i a zc ur ra ( ) a rg en ti n a to in ve st ig at e w h et h er a sp ec ifi c re m in is ce n ce p ro g ra m m e is as so ci at ed w it h h ig h er le ve ls of q ua lit y of lif e in n ur si n g h om e re si d en ts w it h d em en ti a. q ua n ti ta ti ve tw o n ur si n g h om es . si n g le -b lin d ed , p ar al le l- g ro up s ra n d om is ed co n tr ol le d tr ia l w h er e p ar ti ci p an ts in th e in te rv en ti on g ro up re ce iv ed th e re m in is ce n ce th er ap y; an ac ti ve co n tr ol g ro up w h er e p ar ti ci p an ts re ce iv ed co un se lli n g an d in fo rm al so ci al co n ta ct ; an d a p as si ve co n tr ol g ro up w h er e p ar ti ci p an ts re ce iv ed un st ru ct ur ed so ci al co n ta ct . o ut co m e m ea su re s: q ua lit y of lif e m ea su re d b y th e se lf re p or te d q ua lit y of li fe sc al e (s rq ol ). re si d en ts d ia g n os ed w it h a lz h ei m er ’s d is ea se ac co rd in g to th e d sm -i v , w it h a m ea n m m se sc or e of . . -r em in is ce n ce ta k et al . ( ) u sa to d es cr ib e ty p es of cu rr en t ac ti vi ty in vo lv em en t an d b ar ri er s to ac ti vi ti es re p or te d b y n ur si n g h om e re si d en ts w it h d em en ti a. q ua lit at iv e n ur si n g h om es (n um b er un kn ow n ) et h n og ra p h ic st ud y w it h se m i- st ru ct ur ed in te rv ie w s. re si d en ts w it h a ra n g e of m ild - m od er at e d em en ti a an d a m ea n m m se sc or e of . . -a ct iv it ie s -m ai n ta in in g p re vi ou s ro le s -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s ta n et al . ( ) a us tr al ia to ex p lo re th e p er ce p ti on s an d ex p er ie n ce s of ag ed ca re re si d en ts w it h m ild d em en ti a on th e d ea th s of co -r es id en ts . q ua lit at iv e th re e ag ed ca re fa ci lit ie s, tw o of w h ic h p ro vi d in g lo w ca re , an d on e ex p lo ra to ry st ud y w it h tw o ro un d s of se m i- st ru ct ur ed in te rv ie w s. re si d en ts w it h m ild d em en ti a ac co rd in g to th e ps yc h og er ia tr ic a ss es sm en t sc al e (p a s) an d th e -s up p or t w it h g ri ef an d lo ss (c on ti nu ed ) k. shiells et al. ta b le . c on ti n ue d . a ut h or /y ea r/ c ou n tr y a im re se ar ch ty p e n um b er & ty p e of fa ci lit y st ud y d es ig n & m et h od s st ud y p op ul at io n th em es p ro vi d in g b ot h h ig h an d lo w ca re . c d r, an d w it h a m ea n m m se sc or e of . th ei n et al . ( ) u k to ex p lo re th e p er so n al ex p er ie n ce of p eo p le w it h d em en ti a of m ov in g in to a ca re h om e. q ua lit at iv e o rd in ar y or sp ec ia lis t d em en ti a re si d en ti al an d n ur si n g h om es (n um b er un kn ow n ). ex p lo ra to ry st ud y w it h se m i- st ru ct ur ed in te rv ie w s w it h p ar ti ci p an ts b ef or e an d fiv e w ee ks af te r th ei r m ov e in to th e ca re h om e. in d iv id ua ls w it h a d ia g n os is of d em en ti a in th e m od er at e st ag es . -f re ed om an d ch oi ce -m ea n in g fu l re la ti on sh ip s -s up p or t w it h g ri ef an d lo ss tr av er s et al . ( ) a us tr al ia to co n d uc t a ra n d om is ed co n tr ol le d tr ia l of d og -a ss is te d th er ap y fo r p eo p le w it h d em en ti a liv in g in ag ed ca re fa ci lit ie s us in g va lid at ed in st ru m en ts of m oo d , q ua lit y of lif e, an d p sy ch os oc ia l fu n ct io n in g . q ua n ti ta ti ve th re e re si d en ti al ag ed ca re fa ci lit ie s, al l ca ri n g fo r re si d en ts w it h h ig h an d lo w ca re n ee d s. a m ul ti ce n te r ra n d om is ed co n tr ol le d tr ia l w h er e p ar ti ci p an ts w er e ra n d om ly as si g n ed to ei th er th e d og -a ss is te d th er ap y g ro up (n ¼ ) or h um an -t h er ap is t (c on tr ol ) g ro up (n ¼ ). o ut co m e m ea su re s: q ua lit y of li fe -a lz h ei m er ’s d is ea se q ue st io n n ai re (q o l- a d ); th e m ed ic al o ut co m es st ud y -i te m sh or t fo rm h ea lt h su rv ey (s f- ); an d th e g er ia tr ic d ep re ss io n sc al e sh or t fo rm (g d s- sf ). re si d en ts w it h a d ia g n os is of m ild -m od er at e d em en ti a, ac co rd in g to th e m od ifi ed m in i- m en ta l st at e ex am (m se - m s) , w it h a m ea n m se - m s sc or e of . in th e d og -a ss is te d th er ap y g ro up , an d . in th e co n tr ol g ro up . -a ct iv it ie s v an za d el h of f et al . ( ) n et h er la n d s to in ve st ig at e ex p er ie n ce s of re si d en ts , th ei r fa m ily ca re g iv er s an d n ur si n g st af f in g ro up liv in g h om es fo r ol d er p eo p le w it h d em en ti a an d th ei r p er ce p ti on of th e ca re p ro ce ss . q ua lit at iv e tw o g ro up liv in g un it s lo ca te d on th e g ro un d s of a la rg e- sc al e n ur si n g h om e. n at ur al is ti c in q ui ry w it h se m i- st ru ct ur ed , in -d ep th in te rv ie w s. fi ve re si d en ts w it h a d ia g n os is of d em en ti a ra n g in g fr om m od er at e to se ve re an d a m ea n m m se sc or e of . -m ai n ta in in g p re vi ou s ro le s -a p p ro p ri at e en vi ro n m en t w ie rs m a an d pe d la r ( ) c an ad a to ex am in e th e ex p er ie n ce s of ol d er ad ul ts w it h d em en ti a w h ile th ey w er e in lo n g -t er m ca re an d w h ile th ey w er e in in a su m m er - ca m p se tt in g . q ua lit at iv e lo ck ed co g n it iv e su p p or t un it s in on e lo n g -t er m ca re fa ci lit y an d on e su m m er ca m p se tt in g w it h ca b in s fo r - re si d en ts an d - st af f. ex p lo ra to ry st ud y w it h co n ve rs at io n al in te rv ie w s at th re e d iff er en t p h as es : (i) d ur in g th e m on th s p ri or to g oi n g to ca m p ; (ii ) d ur in g th e d ay s of ca m p ; (ii i) d ur in g th e m on th af te r th e ca m p . te n re si d en ts w it h d em en ti a, m os tl y w or ld w ar ii ve te ra n s, se ve n of w h ic h p ar ti ci p at ed in al l th re e p h as es , an d th re e of w h ic h p ar ti ci p at ed in p h as e on e on ly . -f re ed om an d ch oi ce -a p p ro p ri at e en vi ro n m en t -m ea n in g fu l re la ti on sh ip s aging & mental health activities as a way of socialising with others (tak, kedia, tongumpun, & hong, ). preferred facilitated activities occurring in group settings included: music sessions (mjørud, engedal, røsvik, & kirkevold, ), dancing (guzm�an-garc�ıa, mukaetova- ladinska, & james, ; tak et al., ), bingo (cahill & diaz-ponce, ); pet therapy (travers, perkins, rand, bartlett, & morton, ), and group storytelling (george & houser, ). a reading group was shown to increase feelings of belonging (cooke, moyle, shum, harrison, & murfield, ), and residents experienced improvements in wellbeing (conradsson, littbrand, lindelh€of, gustafson, & rosendahl, ) and increased mobility, independence and self-esteem from regular exercise classes (olsen, wiken telenius, engedal, & bergland, ). practicing of religion was also linked with improved quality of life (dr€oes et al., ; powers & watson, ), with residents wishing to attend church services (mjørud et al., ; moyle, table . specific experiences and needs according to each theme. analytical theme experiences sub-themes needs sub-themes activities boredom & monotony isolation & loneliness belonging wellbeing mobility & independence quality of life exclusion unstructured activities e.g. crosswords, playing instruments, jigsaws, reading and knitting. facilitated activities in group settings e.g. music sessions, bingo, dancing, group storytelling, pet therapy, reading group, regular exercise classes. opportunities to attend religious ceremonies. activities tailored to individual preferences and abilities. maintaining previous roles boredom & monotony loss of identity comfort coping feeling appreciated purpose opportunity to contribute to domestic tasks around the home. opportunity to engage in altruistic activities within the home and in the wider society. involvement in sharing ideas and knowledge. reminiscence boredom & monotony quality of life wellbeing improved staff relationships comfort hope empowerment loss of identity opportunities to share memories with others through photographs or newspaper clippings. reminiscence sessions involving staff. watching clips of familiar places. freedom & choice restriction quality of life frustration disempowerment lack of choice loss of identity listening to or playing music. going home and attending family events. support and freedom to access the garden. control over daily routines. choice over what to eat. choice over which room to sit in. facilities to prepare a drink/snack when hungry. respect for individual preferences. appropriate environment isolation & loneliness mobility & independence confusion ownership privacy living near family or in a familiar area. good relationships with staff. internal environment that does not increase risk of falls. internal environment that is not confusing. access to personal space. key to room. family photos in room. opportunity to bring larger familiar items from home. spaces encouraging interaction. accessible external spaces & gardens. meaningful relationships comfort isolation & loneliness exclusion restriction frustration abuse loss of identity anxiety confusion routines conducive to forming friendships. positive relationships with staff. spending time with family. assistance to maintain relationships outside of the home. reassurance of family visits. staff acceptance of sexuality & intimacy. support with grief & loss coping loss of identity confusion fear loss of hope isolation & loneliness loss of purpose mobility & independence comfort informed about the death of a fellow resident. opportunity to attend funerals. afternoon tea in memory of residents. pre-move visit. known person in the home to talk to. religious or spiritual support. end-of-life care comfort pain peaceful surroundings. appropriate pain relief. presence of family. surrounded by familiar possessions. effective communication. familiar staff providing care. appropriate environment according to wishes (hospital/home). religious or spiritual support. k. shiells et al. fetherstonhaugh, greben, beattie, & ausqol group, ), and take part in ‘life-long religious practices’ within the home (tak et al., ). activities should also be tailored to the individual (moyle et al., ). specific barriers to partaking in activ- ities included deterioration in hearing and sight, arthritis, and lack of staff, transport and space in the home (moyle et al., ; tak et al., ). for those residents at a more advanced stage of dementia, engaging in ‘simple pleas- ures’, such as having an ice cream and a chat were described as enjoyable activities (cahill & diaz- ponce, ). maintaining previous roles a number of participants from various studies described feeling sad about the loss of roles, as portrayed by the fol- lowing example: ‘i used to be a famous teacher, a psych- ologist, now i am nothing’ (cohen-mansfield, golander, & arnheim, ). participants described feeling of ‘little value’ (moyle et al., ), and many still had a desire to contribute to the home or society (godwin & poland, ; jonas-simpson & mitchell, ). this could be achieved through engagement in domestic tasks such as tidying their rooms (kaufmann & engel, ). however, some par- ticipants were happy to be relieved of the responsibility of domestic tasks (godwin & poland, ; van zadelhoff, verbeek, widdershoven, van rossum, & abma, ). altruism was also important for some residents, provid- ing occupation, as well as comfort (doyle, rubinstein, & de medeiros, ; kaufmann & engel, ). this may take place within the home, as explained by one participant, who said the best thing about her day was ‘chatting with other people, hearing their complaints and their worries and trying to give them a little advice’ (moyle et al., ). this was echoed by other participants who said they cope better with their own situation by helping others (clare et al., ). residents also feel appreciated when staff asked for their knowledge about a subject (graneheim & jansson, ). finally, one participant reported how being involved in altruistic activities benefitting the wider society, in this case crocheting baby clothes for hospitals, gave her ‘purpose in life’ (tak et al., ). reminiscence reminiscence was described as a meaningful activity (harmer & orrell, ) and led to a sustained improve- ment in quality of life amongst participants in one trial (serrani azcurra, ), although these results were not replicated in a trial investigating reminiscence therapy and wellbeing (haslam et al., ). residents enjoy reminis- cence sessions that involve staff, as they feel they are tak- ing more of an interest in them, which in one study led to increased interaction during activities of daily living (cooney et al., ). residents also gain consolation from reflecting on things they have done in the past, which pro- vides hope that life may be like that again (kaufmann & engel, ). furthermore, reminiscence provides a means to reflect on things they can still do (clare et al., ). tools for reminiscence included ‘photographs, record- ings and newspaper clippings’ and subsequent group dis- cussion (serrani azcurra, ). films showing familiar places were enjoyed by some participants (chung, choi, & kim, ). however, such reminders could bring back both happy and sad memories (mjørud et al., ). in par- ticular, photographs may remind individuals of what they have lost (murphy et al., ). freedom and choice as with boredom, an experience of a restriction was com- mon. residents described staff as ‘controlling’ (moyle et al., ), and said that their quality of life would improve if they could do more of what they pleased (dr€oes et al., ). when asked what they would like to do but were not allowed to, participants answered: music, going home, and attending family events (cohen-mansfield et al., ). lack of freedom to leave the home was noted as a source of frustration across a number of articles (cahill & diaz- ponce, ; goodman, amador, elmore, machen, & mathie, ; milte et al., ; popham & orrell, ), and being prevented from simply going for a walk in the garden was associated with lower ratings of quality of life (dr€oes et al., ). world war ii veterans living in locked cognitive support units in one nursing home described them as prison camps (wiersma & pedlar, ); an experi- ence echoed by a number of others residing in general nursing homes (moyle et al., ; olsen et al., ). however, in a home where the doors were not locked, one resident still felt restricted because staff did not have time to assist him to go outside (heggestad, nortvedt, & slettebø, ). several participants experienced a sense of disempower- ment (moyle et al., ), and a lack of choice (aggarwal et al., ) in other areas of their lives. residents stated that they should have control over their daily routines and not have to fit in with ‘the status quo’ (milte et al., ). this included choosing: what to eat (aggarwal et al., ); whether to have a bath or shower (murphy et al., ); which room to sit in (popham & orrell, ); and what time to go to bed (jonas-simpson & mitchell, ). residents would also like to prepare a drink or snack when they are hungry (heggestad, nortvedt, & slettebø, ), with one participant suggesting that there should be a small kitchen in the home for their use (popham & orrell, ). participants also wished to be respected as a person with individual preferences (milte et al., ). for instance, in one study, although staff addressed almost all residents by their first name, only % of participants who expressed an opinion were happy with this (cohen-mansfield et al., ). appropriate environment there were varied reports as to whether nursing homes were a homely environment. reasons for feeling ‘at home’ included living near family or near where they used to live, and good relationships with staff. those with mild demen- tia were more inclined to consider a nursing home homely compared to those at a more advanced stage (cahill & diaz-ponce, ). participants discussed several needs in relation to their built environment, including the need to navigate areas without risk of falls (dr€oes et al., ) or confusion, particularly for those at advanced stages of dementia (bartlett, ). participants also appreciated aging & mental health access to ‘personal space’ (popham & orrell, ), which promotes a sense of ownership (moyle et al., ), and fulfils the need for time alone (kaufmann & engel, ). however, some residents lacked privacy and disliked that strangers could enter without permission (dr€oes et al., ). as a result, some said they should be provided with a key (milte et al., ; heggestad, nortvedt, & slettebø, ). within their rooms, family photos were important for combatting loneliness (mjørud et al., ). when asked about other objects they would have liked to bring, partici- pants mentioned: furniture, carpet, and plants (cohen- mansfield et al., ). the type of home may also play an important role in meeting individuals’ needs, such as group living homes, which were found to encourage interaction (van zadelhoff et al., ). as regards to the outdoor environment, partic- ipants wished for accessible external spaces (moyle et al., ) and gardens (bartlett, ), which were found to be important in maintaining independence and ownership (moyle et al., ). green care farms were also explored. however, no statistically different quality of life scores were found when green care farms were compared with trad- itional nursing homes or small-scale living facilities (de boer, hamers, zwakhalen, tan, & verbeek, ). meaningful relationships a number of participants spoke about the importance of relationships, and gaining comfort through human contact (kaufmann & engel, ). fear of loneliness was discussed, specifically amongst those residents with advanced demen- tia (cahill & diaz-ponce, ; mjørud et al., ). in one study, a male participant highlighted how as a man it was harder to make friends, partly because there were a lot more women in the home (moyle et al., ). furthermore, in one dementia specific unit, no residents reported having a friendship within their unit, compared with non-dementia specific units (casey, low, jeon, & brodaty, ). participants frequently described frustra- tions with fellow residents, disliking how they shout or hurt others (bartlett, ; murphy et al., ; wiersma & pedlar, ). some residents felt that routines kept in the home were not conducive to forming friendships, as most went to bed early (moyle et al., ). as regards to relationships with staff, cahill and diaz- ponce ( ) found that they are especially important for those with mild-moderate dementia. some residents described positive relationships with staff (mjørud et al., ). however, others described their relationships as ‘economic’ (bartlett, ), and said that staff could be diffi- cult to find, manhandled them, and treated them like patients (goodman et al., ; milte et al., ). relationships with family also continue to be significant (dr€oes et al., ; harmer & orrell, ; tak et al., ). spending time with family provided opportunities for ‘meaningful conversations’, as well as reminding individuals about their existence outside of the care setting (moyle et al., ). losing contact with family was mentioned as a ‘key source of anxiety’ for residents, particularly when first moving into the home, and they may require staff to assist them to maintain contact (milte et al., ), includ- ing through the use of skype (moyle et al., ). participants felt that their families were not visiting them enough, which was particularly common amongst those at an advanced stage of dementia, who often wrongly believed family had not visited them when they had (cahill & diaz-ponce, ). finally, a small number of participants talked about how they missed intimacy (bauer et al., ; dr€oes et al., ). in one study, nursing homes were not considered to be conducive to expressions of sexuality, with residents fear- ing negative reactions from staff and gossip. residents found talking to staff about sexual needs too personal, and viewed staff as ‘strangers’ (bauer et al., ). support with grief and loss individuals residing in a nursing home are likely to experi- ence the loss of fellow residents. however, tan, o’connor, howard, workman, and o’connor ( ) found that % of residents with mild dementia in their study were not con- cerned about being around people dying. instead, they were unhappy about not being told about the death of a resident, and felt that all residents should be informed together. as regards to funerals, % of participants in this study indicated that they would have liked to have attended a funeral of a resident they were close to. furthermore, participants appreciated the idea of an after- noon tea in memory of residents who had died. residents may also experience loss in regards to their former lives and identities (cahill & diaz-ponce, ; mjørud et al., ). a number of participants expressed confusion and fear about why they were in the nursing home (clare et al., ). others wished to go home, with one participant describing how she had taken to walking down corridors so she would become strong enough to live with her daughter (goodman et al., ). other resi- dents disliked living in the home so much that they felt they had no future, with three residents in one study say- ing that they wished for their lives to end. notably, two of these residents said that they had not been able to talk this way with anyone except the researcher (goodman et al., ). however, thein, d’souza, and sheehan ( ) found that most of the participants they interviewed after their move liked their new homes, which was in part linked with having undertaken a pre-move visit, as well as having a ‘known person in the home’. participants also described a ‘loss of function’, leading to a ‘loss of purpose’. for instance, a decline in physical inde- pendence led one resident to express: ‘i can’t help anybody else in here, what’s the point of it all’ (goodman et al., ). support for residents may be provided in the form of a pastor (powers & watson, ) or other ‘spiritual rit- uals’ (kaufmann & engel, ), which were identified as providing comfort during difficult times. end-of-life care needs at the end of life were explored in two studies. mulqueen and coffey ( ) found that, amongst six par- ticipants with mild dementia, comfort and peace were ranked most important at this stage. participants wished to be ‘pain free, worry free’ at the end of their lives, with ‘quiet and peaceful surroundings’. this included not being moved to hospital. presence of family was ranked second in importance, followed by ‘my own things’, where k. shiells et al. participants said being in their own room surrounded by familiar items, such as family photos, would provide com- fort. fourthly, residents highlighted the need for effective communication, hoping that staff would not withdraw from them. in particular, residents would like familiar staff to care for them. goodman et al. ( ) qualitatively explored the prefer- ences of residents with dementia for end-of-life care. there were mixed feelings regarding place of death, with one resident expressing preference for the nursing home. however, another said that she would prefer to go to hos- pital as she felt that there people ‘especially take an inter- est in your feelings’. as regards to religious needs, one resident said he would like to see a priest. another partici- pant emphasised that she would prefer to talk to a particu- lar staff member about any concerns she may have, more so than her children, who she worried about upsetting. residents with dementia may also have varying needs as regards to pain relief. although it was not specified whether participants were receiving end-of-life care, monroe et al. ( ) found that nursing home residents with dementia reported more intense levels of pain than those without dementia. however, participants were less likely to tell staff about pain, and less likely to report that nursing home staff asked about their pain. discussion this scoping review provides new evidence concerning the needs and experiences of people with dementia in nursing homes, a previously underrepresented population in research. one of the most commonly occurring needs in the literature was the need for activities. however, partici- pants emphasised the need for activities that are tailored to their abilities and interests. this is a challenge for nurs- ing homes where often ‘personal preferences are con- strained by the needs of others’ (bruce & schweitzer, ). obtaining a life history when an individual first moves into the home has been suggested to ensure all aspects of care are personalised. this should be followed by a thoughtful approach to replicating activities, in a way that evokes ‘the “feel” of an activity enjoyed in the past, without engender- ing any anxiety about performance’ (bruce & schweitzer, ). one particular activity explored in the literature was reminiscence. there was conflicting evidence regarding the impact of this activity on quality of life and wellbeing. schweitzer and bruce ( ) propose a ‘creative communi- cation-based approach’ to reminiscence, underpinned by a person-centred philosophy. for instance, this approach involves listening to individuals tell their stories in a respectful manner, and avoiding questioning information that may seem factually incorrect. the need for freedom was another common theme amongst participants in this review. in particular, low qual- ity of life ratings were linked with a lack of access to the outdoor environment. although restricting access to the outdoor environment reduces risk from a staff perspective, it limits activities and prevents the ‘possibility of building relationships which might enhance the person’s life’ (fossey, ). furthermore, access to the outdoor environ- ment has been shown to have a number of health benefits for people with dementia, including reducing neuropsychi- atric symptoms (heyn, abreu, & ottenbacher, ), restor- ing circadian rhythm, and increasing levels of vitamin d (pollock & mcmair, ), linked with a reduction in falls (bischoff-ferrari et al., ). one potential solution to this dilemma is to introduce ‘dementia-friendly outdoor envi- ronments’ (mitchell & burton, ). preliminary recommen- dations for which include environments that are ‘familiar, legible, distinctive, accessible, comfortable and safe’ (mitchell & burton, ). for example, flat paving and regular seating intervals. under the theme of ‘meaningful relationships’, frustra- tions with fellow residents, and staff were described, as well as a loss of contact with communities and families. these findings may suggest the need for a movement towards ‘relationship-centred care’, as explored by nolan, keady, and aveyard ( ), who argue that relationships play an important role in determining quality of life, in par- ticular by maintaining ‘identity and personhood’ (davies & nolan, ). participants also described feeling unable to talk to staff about sexual needs. in their study exploring the attitudes of nursing home staff, ward, vass, aggarwal, garfield, and cybyk ( ) found that staff commonly avoid this topic during the assessment process as they find it ‘problematic’. the authors suggest that staff should be trained in how to broach this topic, and develop an under- standing of the way in which sexuality forms an important part of personhood. as regards to end-of-life care, only two studies in this review specifically addressed this area of need, and in both studies, there were mixed opinions amongst participants about the preferred place of death. this stresses the requirement for future wishes to be discussed, which may take the form of advance care planning (acp), a process where patients determine their preferences for future care (robinson et al., ). acp has been shown to reduce inappropriate hospitalisations for people with dementia. however, the acp process should be commenced in the early stages of dementia before loss of capacity (robinson et al., ). implications this study has shown that people with dementia in nursing homes, including those at a more advanced stage, are able to voice their experiences and needs, which has implica- tions for education, practice and policy in the domain of dementia care planning, provision and evaluation in this setting. firstly, wherever possible, nursing homes should involve people with dementia in the planning of their care at all stages, including for end of life. furthermore, the themes and sub-themes presented in this paper have pro- vided a possible evidence-based framework to guide nurs- ing homes in the process of person-centred assessment and care planning for people with dementia. thirdly, peo- ple with dementia should be given the opportunity to con- tribute to the evaluation of their care. future research this study has also provided a means to identify gaps in the literature and future research priorities. more research aging & mental health addressing the needs of this population in relation to rem- iniscence, sexuality and intimacy, and end-of-life care is required. furthermore, only one study specifically exploring the spiritual needs of people with dementia was identified. spiritual needs have been found to be neglected in research, despite the role that spirituality has been shown to play in providing a source of comfort for people with dementia, and the way in which spiritual needs determine a range of other needs, such as end-of-life care (higgins, ). secondly, due to the broad nature of dementia, needs of individuals according to various types, as well as stages of the condition should be explored. finally, as regards to methods used in the studies, observations and proxy accounts were commonly used to complement self-reports. although it has been said that triangulation increases con- fidence in drawing conclusions from data in dementia research (black & rabins, ), the researcher should con- sider that different sources of data may actually introduce ‘different perspectives’ (nygård, ). table provides a brief description of methods and additional tools used to collect data. however, a review exploring methods used to elicit the experiences and needs of people with dementia in more detail could provide a valuable source of informa- tion for researchers developing their own studies in this area. limitations only two databases were used to search for articles, hence some articles may have been missed, including grey litera- ture. restriction to articles in english, french and czech may also mean that results are more representative of a european or western perspective. conclusion with rates of dementia continuing to rise, the impetus on improving care for this population is growing. whilst the voice of people with dementia has previously been neglected in research, this review has shown that people with dementia in nursing homes are able to describe their experiences and communicate their needs. a total of eight themes were identified across the articles used in this scop- ing review, providing evidence that people with dementia have a wide variety of needs which, as developed by kitwood ( ), span significantly further than physical needs alone, to include psychosocial and environmental needs. however, this review is only a starting point towards guiding evidence-based practice, and has highlighted a number of gaps in the literature. in particular, further research is required to investigate needs according to the type and stage of dementia, as well as needs in relation to reminiscence, sexuality, spirituality, and end-of-life care for people with dementia in nursing homes. acknowledgements with thanks to katrien alewaters, librarian at the vrije universiteit brussel, and the end-of-life care research group, also at the vrije universiteit brussel, for their input in designing the search string. disclosure statement the authors report no conflict of interest. funding the research presented in this paper was carried out as part of the marie curie initial training network (itn) action, h -msca-itn- , under grant agreement number . l.p. is a postdoctoral fellow of the research foundation-flanders. orcid kate shiells http://orcid.org/ - - - iva holmerov�a http://orcid.org/ - - - references aggarwal, n., vass, a. a., minardi, h. a., ward, r., garfield, c., & cybyk, b. 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p. ). animals in societyanimals in society in recent years, an interest in the signi®cance of what is now termed the `human±animal bond' (yoxall & yoxall, ) has developed. one explanation for this arousal is the `green revolution' (mcculloch, ), in which society is trying to re-establish links with nature, including plants and animals. francis ( ) highlighted that, amongst people in hospitals, gaols, nursing and residential homes, the most frequently missed `thing' was a pet animal (for correspondence: f. c. biley, school of nursing studies, uwcm, cardiff cf xn, uk (e-mail: biley@cf.ac.uk). journal of clinical nursing ; : ± Ó blackwell science ltd those who had previously owned pets). voith ( ) identi®ed that % of owners consider their pet to be a family member. bonding and attachmentbonding and attachment many reasons have been cited for the development of reciprocal attachment between animals and humans (mcculloch, ). this attachment can be interpreted as a friendly, affectionate, companionable interaction between an animal and a human (messent & serpell, ) which has potential bene®ts. weiss ( ) high- lighted that attachment is one of the social provisions that is vital for the maintenance of wellbeing. this can be obtained through a variety of relationships with individ- uals or animals (sable, ), the attachment to the latter being mutual and reciprocal but less complicated than human±human interactions (rynearson, ). a pet is usually chosen for its ability to initiate and respond to attachment, and pet animals are currently bred to stimulate these attraction and attachment responses in humans. humans are predisposed to become attached to other humans, especially children, and if animals exhibit childlike behaviours and features this attachment is understandable (voith, ). pet-facilitated therapy pet-facilitated therapy (pft), or animal-assisted therapy, has been described as an applied science, using animals to solve human problems (gammonley, ). it involves the introduction of an animal into an individual's or group's immediate surroundings, with therapeutic intent. such a therapeutic intervention can be an interdisciplinary ini- tiative (barba, ), with nurses playing a central facilitative role. history of pet-facilitated therapyhistory of pet-facilitated therapy levison ( ) began to promote the health-inducing bene®ts of human±animal interaction in the s, but there is earlier evidence of animals being used for therapeutic purposes. in the th century, family care involving animals was given to handicapped people in gheel, belgium (bustad & hines, ). the york retreat, an asylum, replaced restraint with love, kindness, understanding, trust and animals during the s (jones, ). animals were used in a home for epileptics in germany in the s (mcculloch, ) and in a world war ii convalescent hospital (netting et al., ). currently, there are some health care establishments that have visiting animal programmes or residential animals and societies have been set up to promote interest in this area. it has been suggested that animals can make a hospital ward appear less antiseptic and more natural (barba, ) and that they can help preserve an element of normality in an individual's life (haggar, ). the benefits of pet-facilitated therapythe benefits of pet-facilitated therapy in order to explore the evidence that would support, or otherwise, the use of pet-facilitated therapy, a computer- ized and a manual search of the english language nursing, medical, social work, veterinary science and public health literature were performed. using the key words pets, pet therapy, pet-facilitated therapy and companion animals, a wealth of published material in the form of position papers, case studies and various experimental designs was revealed, and formed the basis of a detailed and systematic review (brodie, ). the perceived bene®ts of pet- facilitated therapy are presented here. to complement this paper, a review of the disadvantages of pet-facilitated therapy (in preparation) will appear later. pets can be used to stimulate awareness and interaction, and provide pleasure (kalfon, ). fila ( ) describes a case study of an elderly man who was admitted to hospital for dis®guring surgery and became withdrawn and angry. interactions with a visiting dog and guinea pig allowed him to `reconnect' with his prehospitalized life. from being depressed and angry, he became happy and relaxed. a detailed but small scale study by francis et al. ( ) reported improved social interaction, psychosocial func- tion, life satisfaction, social competence and psychological well-being, and reduced depression, amongst a group of adult home residents who had weekly visits from puppies. it is thought that pets can form a non-threatening reassuring, non-verbal and tactile comfort, that may help break a cycle of loneliness, hopelessness and social withdrawal (michaels, ) and that interventions to change the environment in order to reduce isolation and loneliness are important (kalfon, ). katcher & friedmann ( ) highlighted nine healthful components which pets can help develop. these included providing companionship and pleasurable activity, facili- tating exercise, play and laughter, being something to care for and a source of consistency, allowing feelings of security, being a comfort to touch and pleasurable to watch. the literature also suggests that pet animals perform other roles. for example, animals provide a link with reality which can enhance emotional stability (frank, ), they can become the receptive partner in a relationship of mutual trust that promotes self-awareness (heiman, ) and something with whom a non-judge- s.j. brodie and f.c. biley Ó blackwell science ltd, journal of clinical nursing, , ± mental acceptance is possible (levison, ). frank ( ; p. ) stated that an animal can be a `companion, friend, servant, admirer, con®dante, toy, team-mate, slave, scapegoat, mirror, trustee, or defender'. other potential animal roles include: being an outlet for one's ancient primate grooming urges (searles, ), improving the owner's sense of well-being (rowan & beck, ), facilitating humour (mcmullough, ) and an excuse for idle play (smith, ). francis ( ; p. ) summarized reported pet uses and bene®ts by stating that `domesticated animals offer us unconditional affection, constant companionship and an ever-present ear, almost too much to believe in a world of apparently increasing alienation, fragmentation and sterile technology'. most of these reasons have been cited on many occasions since (hibell, ; gammonley, ; rose- nkoetter, ), but perhaps two of the most important roles that animals can play are those of companion and something to care for (mugford, ). physical benefitsphysical benefits in a carefully controlled study, friedmann et al. ( ) tested the hypothesis that the absence of signi®cant companions may interfere with people's ability to maintain normal activity levels and healthy behaviours, which may in turn in¯uence the progress of illness. the effect of social isolation or support upon the survival of patients who were hospitalized with a diagnosis of myocardial infarction or angina pectoris was examined. after one year, only subjects could be traced, and of these had died, giving an % survival rate. among the patients, three of the patients ( %) who had one or more pets had died, and of the patients ( %) who did not have pets had died. the researchers concluded that dog ownership could be a measure of physical status affecting health, due to the exercise input that their care required, so another comparison was made between non-pet owners and people owning pets other than dogs. all of the who owned pets other than dogs survived. they found that the relationship between pet ownership and survival does not depend upon the sex or physiological status of the patient, but that pet ownership was a signi®cant variable related to one year survival irrespective of myocardial infarction severity or type of pet. these ®ndings have been con®rmed in a later study (reade, ). anderson ( ) compared risk factors for cardiovas- cular disease amongst pet owners and non-pet owners. the blood pressure, plasma cholesterol and triglyceride values of pet owners and non pet owners who were being screened at a cardiovascular disease risk clinic were compared. pet owners had signi®cantly lower systolic blood pressure and plasma triglycerides than non-pet owners. male pet owners also had lower cholesterol levels despite having similar body mass index, smoking habits and socioeconomic status. pet owners reported taking more exercise but they also ate more meat and take-away foods. it was concluded that pet ownership can reduce cardiovascular risk. however, despite the large sample size employed in this study, these results should be treated with caution. factors such as pet owners being from a higher socio-economic group and experiencing lower cardiovascular risk (mcmichael, ) may have produced the results that were obtained. anderson ( ) addressed this issue by using participant groups from comparable socio-economic classes, measured by family income and levels of education. pet owners in this study engaged in healthy and unhealthy lifestyles, yet investigations showed they still had lower blood pressure and plasma levels than non-pet owners. this mixed behaviour would seem to indicate that pet ownership can be a variable for predicting the risk of cardiovascular disease. in one randomized controlled trial, katcher ( ) investigated the potential short-term physiological effects of animal interaction on humans. pet owning subjects had statistically signi®cant decreased blood pressure when they interacted, talked and petted with their own dog when compared with a resting control group and with individ- uals who read aloud. the failure to identify inclusion criteria and other aspects of methodological procedures makes this study impossible to replicate exactly; however, the link between animal interactions and its effect on blood pressure has been investigated elsewhere. baun et al. ( ) compared the physiologic effects of petting a known dog with whom a bond has been formed against the bene®ts of unbonded dog interaction and quiet reading. a sample of read quietly, petted an unbonded dog and petted the bonded dog in a randomly assigned order. blood pressure, heart and respiration rate were recorded every three minutes throughout the nine minute interac- tion. it was found that petting a bonded dog signi®cantly decreased systolic and diastolic blood pressure and the interaction was as effective as sitting reading. in a small scale study (n � ), of questionable generalizability, thoma ( ) measured skin temperature, muscle ten- sion, blood pressure and heart rate amongst those petting a bonded dog or an unbonded dog. there was a signi®cant increase in skin temperature and decrease in muscle tension for the group that petted a bonded dog, but there were no signi®cant differences in blood pressure and heart rate between petting bonded and unbonded dogs. these studies suggest that petting a dog may have relaxing Ó blackwell science ltd, journal of clinical nursing, , ± potential bene®ts of pet-facilitated therapy effects, as shown by decreases in blood pressure and increases in peripheral skin temperatures. gaydos & farnham ( ) replicated the baun et al. ( ) study. however, their research did not support the original study's ®ndings: reading was found to be the intervention that induced greater levels of relaxation. oettings ( ) studied the association between petting a companion dog, practising a relaxation technique and a combination of the two. no statistical differences were found between any of the treatments in changes in blood pressure, heart rate or peripheral skin temperature. general health benefitsgeneral health benefits in addition to these studies, others have investigated the bene®ts to general health. for example, serpell ( ) examined changes in behaviour and health status amongst adults who had acquired a new pet dog or cat and non pet owners who acted as controls. data were collected on health complaints, number and distance of any recreational walks taken and on general health. the groups did not differ signi®cantly with regard to demo- graphic variables; however, dog owners reported a highly signi®cant decrease in minor health problems, improved general health and an increase in the number of walks taken. cat owners reported initial positive changes to general health but these changes disappeared after six months. the link between dog owners' increased recre- ational walks and improved health was explored but no statistically signi®cant associations were found. siegel ( ) tested the hypothesis that pet owners would report fewer doctor contacts than non pet owners even during times of stress. the physician utilization behaviour of medicare enrolees was studied for a year. it was found that health status, income and pet ownership were major determinants of contact with the doctor, but pet owners made fewer visits to the doctor. indications that pet ownership can in¯uence social and psychological processes rather than just physical health arise, and the study supports the reported importance of social support in buffering potentially negative consequences of life stresses (cohen & syme, ). a sample of households with a resident over was studied using a cross-sectional rather than the preferable longitudinal design in order to investigate pet ownership and attachment as supportive factors in the health of older people (garrity et al., ). no signi®cant differences were found in physical health between pet owners and non pet owners. those who had feelings of strong attachment towards their pets were found to experience lower levels of depression, but this was not a uniform ®nding. those with low human con®dante support reported lower depression levels when compared to less attached elders with low con®dante support. no correlation was found amongst pet owners with high human support regardless of attachment to their pets. this indicates that pet factors may have only a protective physical health role under certain circumstances, for example when people have few human con®dantes. in con¯ict with these results, akiyama et al. ( ) found that recently widowed pet owners experienced fewer physical and psychophysical symptoms of ill health than non pet owners and that depression levels were not related to the strength of pet attachment. social benefitssocial benefits social support has an important in¯uence upon one's health. lynch ( ) wrote that individuals who lack companions may be lacking an important antidote to stress, and this may affect their physical health. social support promotes health through buffering adverse stress- ful life events and producing fewer stressful challenges (house, ; broadhead et al., ; cohen & syme, ). it is signi®cant therefore, that pet animals are advocated as a source of companionship, similar to the strong attachment bonds that develop amongst close family and friends (gerstman, ). cox & ford ( ), kidd & feldman ( ) and lynch ( ) have all reported that married people suffer fewer age-speci®c deaths and diseases, and have fewer emotional dif®culties, than those who are single, widowed or divorced. the lack of close relationships and social support is a possible explanation for this. goldmeier ( ) aimed to discover whether animals could ®ll the gap created by absent humans. one hundred and forty-four elderly participants, living alone, living with others, living alone with pets or living with others and pets, were assessed. the groups were demographically similar and results showed that pets did not make a difference to morale amongst those who lived with others but that they improved the morale of those living alone. having a pet also improved loneliness dissatisfaction scores, but this study concludes that pet ownership must be seen in the context of the people who share the older person's life (goldmeier, ). for example, pets are more signi®cant for those who have fewer companions, a suggestion that has been made elsewhere (garrity et al., ). the correlation between decreased loneliness and pet ownership has also been recognized (levison, ; muschel, ; cusak, ; kidd & kidd, ). this might be because pets facilitate interactions between Ó blackwell science ltd, journal of clinical nursing, , ± s.j. brodie and f.c. biley humans (corson et al., ; mugford & mccomisky, ; brickel & brickel, ; robb et al., ; lund, ; elliot & milne, ). one longitudinal research study (mugford & mccomi- sky, ) explored the possible effects of pet ownership upon non-institutionalized pensioners. a -item ques- tionnaire, investigating attitudes towards self, others, the environment and physical and psychological health, was administered to a sample which was divided into ®ve groups. groups one and two owned televisions, three and four did not, and ®ve had an equal number of television owners and non-owners. members of groups one and three were given a budgerigar and two and four were given pot plants. the researchers found that the presence of a budgerigar produced positive changes in attitude regard- less of television ownership and the bird became a focal point in conversation, a social lubricant. sam and elizabeth corson were animated by levison's early reports on pft (levison, ) and investigated the feasibility of establishing pet-facilitated programmes. they worked with withdrawn and uncommunicative patients and facilitated interaction between the subjects and selected animals. three patients did not accept the animal but improvement was witnessed in the others. these included development of self-respect, indepen- dence and self con®dence as well as promotion of social interaction amongst patients, staff and a wider circle (corson & corson, ). robb et al. ( ) aimed to explore the impact of inanimate and animate external stimuli on social behaviour of a chronically ill, predominantly aged population in long-term care. observations of verbalization, smiling, looking, opening eyes and leaning forward were made during the presentation of a wine bottle, a plant, a puppy or when there was no stimulus introduced. the highest number of social behaviours per resident occurred when the puppy was present. during this time, hostility and repetitive statements ceased and the puppy proved to be a social catalyst, inducing more frequent verbalizations. others have reported similar results (fields, ; new- berry, ; kalfon, ). most studies of human/animal interactions have used older adults as their target population; however the utility of animals in other societal groups has also been explored. guttman et al. ( ), levison ( ) and mugford ( ) all acknowledge the importance of animals in the lives and socialization of children. levison ( ) argued that caring for a pet during childhood has numerous bene®ts, including the development of sensitivity towards the feelings and attitudes of others, increased tolerance, self-acceptance and self-control, as well as an introduction to the reality of life and death. the animal acts as socialiser, as well as a constant source of security and companionship which enhances emotional development. another group who experience increased interaction levels when there are animals present are people with disabilities. hart ( ), mader et al. ( ) and zee ( ) all reported that visually impaired people with guide dogs experience more conversations and interactions than those using another type of mobility aid, such as a cane. the animal appears to dissolve any barriers which normally inhibit interaction. this is a continuation of lockwood's ( ) work exploring whether the presence of an animal altered the perception of another person. his study involved asking students to describe the mood depicted in a series of drawings of individuals and groups in various interactions and some of the pictures included animals. it was found that the pictures containing animals were perceived more positively and the people in the interaction were described as friendlier, more relaxed and less threatening. it can be concluded that animals promote positive images which in turn facilitate interactions. animals have also been known to ease family pressure and act as a buffer during con¯ict (gerstman, ) and to enhance social environments (brickel & brickel, ). psychological improvements inducedpsychological improvements induced by animalsby animals many studies have explored the psychological impact of animals. for example, subsequent to the work of fried- mann et al. ( ), katcher ( ) found that subjects who were sitting and resting or greeting their own pet dog had lower blood pressure readings (implying a greater state of relaxation) than those who were reading aloud to another person or were talking to a researcher. in a further study of the relaxation effects of pet animals, katcher et al. ( ) explored the effects of animals which could not be touched upon blood pressure and relaxation, as stroking itself had been reported the decrease blood pressure (montagu, ). fifteen hypertensives and normotensives were asked to watch a blank wall for min whilst baseline blood pressure was established. their concentration was then shifted to an aquarium ®lled with brightly coloured ®sh. signi®cant decreases in blood pressure were found in both groups. reading aloud after watching the tank elicited an increase in blood pressure, but not a return to the initial levels. this study would seem to indicate that the ®sh were having a protective buffering effect against future stressors. cole & gawlinski ( ) explored the value of aquar- iums in promoting relaxation, measuring the stress level of Ó blackwell science ltd, journal of clinical nursing, , ± potential bene®ts of pet-facilitated therapy patients awaiting heart transplants. a tank containing four brightly coloured ®sh was placed in each patient's room. patient stress levels, blood pressure and heart rate were measured. the results of this study, which was incom- pletely reported (even basic information such as sample size and statistical results were not given), seemed to indicate that the ®sh became a positive visual stimulus which instilled a sense of control, and provided distraction from the hospital and a vehicle for relaxation. bolin ( ), fila ( ), francis et al. ( ), garrity et al. ( ), mcmulloch ( ), salmon & salmon ( ) and siegel ( ) have highlighted signi®cant inverse relationships between pet ownership and depression, while others have reported improved self-esteem (mugford & mccomisky, ; dela®eld, ; robb & stegman, ) and a decrease in irritable behaviour (zisselman, ). fila ( ) exposed a patient who felt hopeless and had become depressed and withdrawn to a guinea pig and witnessed laughter, talking and a more relaxed state. although the majority of the literature available on the effects of pets shows positive results, several studies have found no relationship between health improvement and pet ownership. lago et al. ( ) could ®nd no link between pet ownership and improved morale and lawton et al. ( ) were unable to establish a relationship between pet ownership and improved psychological health. cameron & matterson ( ), friedmann et al. ( ) and robb & stegman ( ) concluded that there was no association between pet ownership and improved psychological health. friedmann et al. ( ) compared psychological status among pet-owning and non pet- owning students. they were assessed for anxiety, depres- sion, type a behaviour, androgyny, sensation-seeking, mood, resting blood pressure and health status, and were categorized into current, former or never being a pet owner. this study produced no signi®cant evidence indicating that there might be psychological and physio- logical differences between the groups. robb & stegman ( ) investigated the possible association between com- panion animals and enhanced coping abilities. measures of morale, locus of control, social interaction, mental status, psychological symptoms, disease, medication and physical functional abilities were taken from a largely male sample of , and the notion of health related bene®ts from pet ownership was rejected as a result of the ®ndings. special group benefitsspecial group benefits along with these physical, social, and psychological bene®ts amongst the general population, animals have been reported to have positive effects upon smaller, more selective groups such as those with sexual problems (pichel & hart, ), those who are considered infertile (blenner, ), prisoners (arkow, ; lee, ), the abused (ascione, ), people suffering terminal illness (muschel, ) and individuals classi®ed as mentally handicapped (davis, ). animals can have a positive impact on violent children (katcher, ) and upon school truancy rates (the delta society, ). conclusion it is apparent that there are frequent methodological dif®culties in the study of pet-facilitated therapy, often caused by the complexity of the subject area, but studies are also confounded by aspects of poor design, such as small sample size and failure to randomise. some con¯icting results have been produced, but in general research studies and other published material would seem to tentatively indicate that human/pet animal interaction can have positive effects on human health. improvements in phys- ical health, reduced risk of cardiac problems, lowered blood pressure and general overall health have been seen. in addition, animals seem to improve social interactions and promote social happiness and harmony for the general population as well as for certain groups such as children and those with a disability. decreased loneliness, improved morale and increased social interaction appear to result from interaction with animals. psychological improve- ments have been noted amongst those interacting with animals and the conclusion can be drawn that the mere presence of animals can instigate higher levels of relaxation amongst their human companions. a positive correlation between decreased depression and socialization with com- panion animals has been yet to be proven and studies also exist that dismiss the link between pet ownership and improved psychological health. in general it may be justi®ed to accept that those people who interact with pet animals may bene®t from improved physical, psychological and social health experiences and animals can also provide speci®c bene®ts for special groups in society. therefore, it is probably important that nurses and other health care professionals are aware of the role that companion animals can play in promoting optimal holistic health. references brodie s.a. 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Ó blackwell science ltd, journal of clinical nursing, , ± potential bene®ts of pet-facilitated therapy clinical review guidelines for the management of cognitive and behavioral problems in dementia carl h. sadowsky, md, and james e. galvin, md, mph family physicians play a crucial role in the management and ongoing care of patients with alzheimer disease (ad). this article reviews the effects of nonpharmacologic and pharmacologic interventions on the functional abilities and behavior of patients with dementia and how these can be implemented into clinical practice. nonpharmacologic interventions are recommended as the initial strategy for managing problematic behaviors. strategies for improving behavior include ensuring that the patient’s environ- ment is safe, calm, and predictable; removing environmental stressors; and identifying and avoiding situations that agitate or frighten the patient. simple interventions include redirecting and refocusing the patient, increasing social interaction, establishing regular sleep habits, eliminating sources of con- flict and frustration, and establishing rewards for successes. the effectiveness of long-term behavioral management is largely dependent on the caregiver; as such, it is important to assess the role and needs of the caregiver. because currently available therapies cannot reverse the pathologic processes of ad, the primary objective of pharmacotherapy is to preserve cognitive and functional ability, minimize behavioral dis- turbances, and slow disease progression. cholinesterase inhibitors represent first-line therapy for pa- tients with mild to moderate ad, whereas a glutamate n-methyl d-aspartate antagonist is used in the treatment of moderate to severe ad. looking forward, there are a number of therapies in development aimed at modifying the disease course; these include amyloid-lowering drugs, �-based and neuropro- tective approaches, acetylcholine agonists, and mitochondrial inhibitors. ( j am board fam med ; : – .) keywords: dementia, guidelines, managed care, pharmacologic therapy the role of the family physician in treating dementia primary care is the point of first medical contact for people with dementia and hence the cornerstone of ensuring early detection, timely intervention, and effective ongoing management. inadequate detec- tion and poor management have been reported globally, , leading to people with dementia and their families being denied optimal pharmacologic and psychosocial intervention. alzheimer disease (ad), the most common cause of dementia world- wide, is a complex disorder that warrants a multi- dimensional approach with regular monitoring of the patient for increasing cognitive, functional, and behavioral challenges. management consists of both pharmacologic and nonpharmacologic inter- ventions as well as referrals to social service agen- cies and support resources, such as the alzheimer’s association (www.alz.org). the family physician this article was externally peer reviewed. submitted august ; revised october ; ac- cepted november . from the division of neurology, nova southeastern university, fort lauderdale, fl (chs); premiere research institute, palm beach neurology, west palm beach, fl (chs); and center of excellence for brain aging, new york university langone school of medicine, new york, ny (jeg). funding: administrative, editorial, and technical assis- tance was funded by novartis pharmaceuticals corporation. conflict of interest: none declared. disclosure: chs has served as a consultant to novartis pharmaceuticals corporation; has served as a speaker for novartis pharmaceuticals corporation, forest pharmaceu- ticals, and accera; and has received honoraria from both companies. jeg is a paid consultant for pfizer, eisai, no- vartis pharmaceuticals corporation, ortho-mcneil, and forest. neither author received financial support for this manuscript. corresponding author: carl h. sadowsky, md, medical director, premiere research institute, palm beach neurol- ogy, congress ave ste , west palm beach, fl (e-mail: chsadow@aol.com). jabfm may–june vol. no. http://www.jabfm.org o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ plays a key role in linking the family to community resources and other health care and social service providers who will help implement the overall care plan. , physicians also play a key role in coordi- nating the invaluable support network of nurse practitioners, physician assistants, social workers, and medical assistants. moreover, the family phy- sician can assist in maintaining the physical health of patients with dementia, for example, assisting with the evaluation and treatment of visual and hearing defects, which are more common with ag- ing. such assistance can help directly and indirectly in the management of dementia. for the purpose of this review, an electronic search of english-language articles (without time limits) was per- formed using pubmed and medline. the primary research parameters were alzheimer’s disease, diagnosis, therapy, treatment, and therapeutic. original research ar- ticles, reviews, and other articles of interest were re- viewed, and the most important information was iden- tified. this review provides a summary of these findings as well as practical advice for the busy clinician. managing cognitive, memory, and functioning problems goals of therapy and likely outcomes the management of a patient with ad is a complex and evolving task because the natural history of ad is one of progressive decline; patients’ cognitive, physi- cal, and social functions gradually deteriorate. one of the key aspects of optimal management of demen- tia is realistic expectations for therapeutic outcomes, including treatment effects and potential outcomes; it is, therefore, imperative that the family physician is aware of these issues and discusses them with both the patient and caregiver. to be effective, interventions for patients with dementia ideally will improve func- tional status to a level that is detectable by caregivers or health care providers. in clinical trials, the alzheimer’s disease assess- ment scale, cognitive subscale (adas-cog), a - minute, -item, -point scale that tests memory, language, orientation, and praxis, is often used to determine rate of cognitive decline. the total score ranges from to , with a high score indicating greater impairment. , because of the progressive nature of ad, there may be brief plateaus during the illness; however, the decline is fairly consistent, tend- ing to increase or accelerate as patients enter the moderate stage. therefore, any “improvement” from an intervention for dementia must take this into account. as such, “improvement” can be defined as a reduction in rate of decline. for example, patients with mild dementia experience an average rate of decline of � adas-cog points, and slowing this decline by to adas-cog points over a year could mean a delay of up to months in disease progres- sion. in contrast, patients with moderate dementia (adas-cog score � but � ) experience an aver- age decline in cognition of to adas-cog points ( – mini mental state examination [mmse] points) annually. therefore, for people with mod- erate dementia, slowing decline by to adas-cog points per year could mean a delay of to months in disease progression. in general, cholinesterase in- hibitors (cheis) do not delay ultimate progression of ad by more than to months. nonpharmacologic interventions an increasing number of nonpharmacologic therapies are now available for people with dementia, including behavioral therapy, reality orientation, art therapy, mu- sic therapy, complementary therapy, aromatherapy and bright-light therapy, as well as cognitive behavioral ther- apies. there are several areas of overlap between these therapies and each approach is rarely used in isolation ; it is therefore useful for clinicians to be familiar with several of these approaches to enable a combination of treatments to be tailored to individual requirements. therapy is now directed toward person-centered forms of care and greater attempts are made to understand the individual’s experience of dementia and to employ strat- egies to improve the person’s quality of life (qol). individualized nonpharmacologic interventions include self-affirming exercises, such as reminiscence therapy, and structured socialization, such as pet therapy and viewing family videotapes. the efficacy of these inter- ventions has been demonstrated in both small and larger studies. dietary supplements several nutrient deficiencies are known to be risk factors for ad. evidence suggests that consumption of fish with high fat content and marine omega- polyunsaturated fatty acid decreases the risk of cog- nitive impairment and dementia. it is, therefore, not unusual in clinical practice to encounter patients and caregivers inquiring about dietary recommendations for lowering the risk of dementia. however, to date, there are no clinical trials to support a recommenda- tion of dietary and supplemental omega- polyunsat- doi: . /jabfm. . . guidelines for the management of dementia o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ urated fatty acid for the sole purpose of preventing cognitive impairment or dementia. nevertheless, it is not unwarranted to encourage adequate consump- tion of fatty fish as part of general dietary recommen- dations that may also confer benefits of reducing the risk of stroke and heart disease. there has been recent attention regarding the health benefits of curcumin (found in the commonly used asian spice, turmeric) in ad. in animal studies, low-dose curcumin effectively disaggregates �-amy- loid and prevents fibril and oligomer formation, sup- porting the rationale for curcumin use in clinical trials preventing or treating ad. indeed, a phase ii clin- ical trial with patients with moderate to severe ad is ongoing, designed to determine whether curcumin can slow cognitive deterioration. finally, recent studies from both the united states and europe have suggested that vitamin d deficiency may be associated with increased odds of cognitive impairment in older persons. , indeed, results from a study in the united states in which cognitive impairment was assessed using measures of immediate and delayed verbal memory, orienta- tion, and attention reported a link between vitamin d deficiency and cognitive impairment in adults aged � years. the multivariate adjusted odds ratios ( % confidence interval) of cognitive impairment in patients who were vitamin d insuf- ficient (� � nmol/l), deficient (� � nmol/l), and severely deficient (� nmol/l) compared with those sufficient (� nmol/l) were . ( . – . ), . ( . – . ), and . ( . – . ), re- spectively (p for linear trend � . ), suggesting that vitamin d deficiency is associated with increased odds of cognitive impairment among the elderly population. similar findings also have been re- ported in a european study. although further exploration of a possible causal relationship be- tween vitamin d deficiency and cognitive impair- ment is warranted, these findings raise important new possibilities for treatment and prevention of cognitive decline in patients with ad. medical foods medical foods as a class of intervention alternatives are not well known to most clinicians but are a growing area. medical foods are a special category of us food and drug administration (fda)–regu- lated agents intended to provide specific nutritional requirements for patients with certain diseases; they can, therefore, provide an additional supple- ment in a comprehensive therapeutic regimen for patients with ad. products being marketed cur- rently or developed in the united states for the management of dementia include caprylic triglyc- eride (axona, accera, inc., broomfield, co) and souvenaid (nutricia advanced medical nutrition, schiphol, the netherlands). axona has been developed for the clinical dietary management of the metabolic processes associated with mild to moderate ad. it is a formulation of caprylic triglyceride, a medium-chain triglyceride that is metabolized to ketone bodies, predomi- nantly �-hydroxybutyrate, a common metabolic sub- strate that is produced normally by the body for neurons in starvation states where glucose is less avail- able. a double-blind crossover study conducted in patients with ad or mild cognitive impairment dem- onstrated that axona therapy was associated with sig- nificant improvements in adas-cog; however, the effect was seen only in patients who were not carriers of apolipoprotein e ε . similar results were re- ported in a -day, randomized, placebo-controlled study in patients with mild to moderate ad. sig- nificant gastrointestinal side effects have been associ- ated with axona, and slow titration of the product is being recommended. souvenaid (food) combines omega- fatty acids, choline, uridine monophosphate, and a mixture of antioxidants and b vitamins. in a randomized, controlled trial involving more than patients with mild ad, souvenaid was well tolerated and improved memory compared with placebo. pharmacologic interventions there are currently no means of reversing the pathologic processes of ad. currently available medications do not halt the underlying degenera- tive process but can slow disease progression and therefore delay symptomatic decline. the specific goals of therapy are to preserve cognitive and func- tional ability, minimize behavioral disturbances, and slow disease progression with maintenance of patients’ and caregivers’ qol. nevertheless, re- alistic expectations of treatment outcomes are needed because the impact for most patients is likely to be modest and temporary, with not every patient responding to treatment. the main benefit of pharmacotherapy is an attenuation of decline over time rather than an improvement in cognitive or behavioral symptoms. it is important to discuss this point with patients and their families, who may jabfm may–june vol. no. http://www.jabfm.org o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ expect improvement rather than relative stability. failure to do so often will result in patient and family dissatisfaction with prescribed therapies and the risk of discontinuation. beneficial response to a chei (ie, delayed deterioration of cognitive or be- havioral problems) can be determined from the physician’s global assessment of the patient, the primary caregiver’s report, a neuropsychologic as- sessment or mental status questionnaire, or evi- dence of behavioral or functional changes. four drugs are commonly used for treating ad: cheis approved for mild to moderate disease, one of which also is approved for severe ad, and a glu- tamate n-methyl d-aspartate (nmda) antagonist approved for moderate to severe disease (table ). mild to moderate disease since the introduction of the first chei in , most clinicians would consider these agents to be first-line pharmacotherapy for mild to moderate ad. four cheis are currently available: tacrine (cognex, shionogi, inc., atlanta, ga); donepezil (aricept, eisai co, ltd., woodcliff lake, nj); riv- astigmine (exelon, novartis pharmaceuticals corp., east hanover, nj); and galantamine (reminyl, or- tho-mcneil neurologics, titusville, nj). tacrine is not commonly used because of a poor tolerability profile and low oral bioavailability, and it is, there- fore, excluded from this discussion. cheis raise acetylcholine levels in the brain by inhibiting ace- tylcholinesterase. despite minor variations in their mode of action there is no evidence to suggest any difference in efficacy between the commonly used cheis. likewise, the tolerability profile is similar between the cheis for the oral formulations. how- ever, the -cm rivastigmine patch has shown ef- ficacy similar to oral rivastigmine formulations, but with approximately two-thirds fewer reports of nausea and vomiting, with adverse event (ae) rates similar to those of placebo (table ). ad often is accompanied and worsened by malnutrition, and weight loss is a frequent complication of ad, oc- curring in approximately % of patients at all stages. donepezil, rivastigmine, and galantamine cause a broad spectrum of aes, of which nausea, vomiting, diarrhea, and weight loss are the most common. , there continues to be debate regarding the ex- tent of the benefits achieved with cheis. although some assert that the most that can be achieved with cheis is symptom modification, others consider these agents to have disease-modifying effects. in one study, after discontinuation of therapy, riv- astigmine-treated patients showed less deteriora- tion in cognitive function compared with placebo- treated patients, suggesting an effect on disease progression. in another study, donepezil treat- ment slowed progression of hippocampal atrophy compared with untreated patients, suggesting a neuroprotective effect of donepezil in ad. how- ever, these early observations require confirmation, and, at present, the cheis generally are considered symptomatic medications. a systematic analysis of double-blind, placebo- controlled trials of cheis demonstrated treatment effects ranging from a . - to . -point improve- ment at months and year, in the midrange of the -point adas-cog scale. in clinical trials, a change of points is considered clinically signifi- cant for patients with mild to moderate demen- tia. , as such, the symptomatic improvements observed are modest and of debatable clinical sig- nificance, despite being statistically significant. in a meta-analysis of double-blind, placebo-con- trolled trials of cheis composed of almost patients, the numbers needed to treat for one ad- ditional patient to benefit were for stabilization or better, for minimal improvement or better, and for marked improvement. although the num- bers needed to treat seem favorable, uncertainty remains regarding the clinical relevance of these outcomes and the duration of the apparent benefit because the majority of trials reviewed were of less than weeks’ duration. in addition to their effects on cognition, these agents also have demonstrated beneficial effects on measures of behavior, activities of daily living (adls), and global patient function. a recent meta-analysis that analyzed clinical results from randomized, placebo-controlled trials of patients with mild to moderate ad found that chei ther- apy was associated with significant modest benefits in terms of neuropsychiatric and functional out- comes. current guidelines acknowledge that pre- venting or delaying further loss of adl function is an important goal of ad therapy and that the benefits of cheis may be diminished when treat- ment is delayed. significant preservation of adl function has been observed with donepezil, galan- tamine, and rivastigmine compared with placebo. cheis also have been shown to reduce ad care- giver burden: in patients with moderate to severe doi: . /jabfm. . . guidelines for the management of dementia o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ ta bl e . ch ol in es te ra se in hi bi to rs an d m em an ti ne fo r th e tr ea tm en t of co gn it iv e d efi ci ts in pa ti en ts w it h al zh ei m er d is ea se (a d ) , d ru g a pp ro ve d in di ca ti on su gg es te d d os ag e si de e ff ec ts a dd it io na l n ot es /c au ti on c ho lin es te ra se in hi bi to rs d on ep ez il (a ri ce pt ) m ild to m od er at e a d o nc e da ily , be gi nn in g w it h m g/ da y, w hi ch ca n be in cr ea se d to m g/ da y (m ax im um do sa ge ) af te r w ee ks a e s ar e m ild an d in cl ud e na us ea , vo m it in g, an d di ar rh ea g as tr oi nt es ti na l- re la te d a e s ca n be re du ce d if m ed ic at io n ta ke n w it h fo od so m e pa ti en ts ex hi bi t an in it ia l in cr ea se in ag it at io n, w hi ch su bs id es af te r fi rs t fe w w ee ks of th er ap y se ve re a d r iv as ti gm in e (e xe lo n) m ild to m od er at e a d o ra l: t w ic e da ily , be gi nn in g w it h . m g t ra ns de rm al pa tc h: o nc e da ily , . or . m g t he ta rg et do se is . m g/ hr pe r pa tc h (a cm pa tc h) an d re qu ir es a si m pl e on e- st ep do se ti tr at io n to th e th er ap eu ti c do se t he re is a hi gh er -d os e pa tc h ( cm ) av ai la bl e, de liv er in g . m g/ hr ; ho w ev er , it is cu rr en tl y an un ap pr ov ed tr ea tm en t in th e u ni te d st at es . l ac k of ap pr ov al w as ba se d on it ha vi ng si m ila r ef fi ca cy to th e cm pa tc h, bu t w it h a to le ra bi lit y pr ofi le co m pa ra bl e to th at of th e ca ps ul e fo rm ul at io n a e s in cl ud e na us ea , vo m it in g, di ar rh ea , w ei gh t lo ss , he ad ac he s, ab do m in al pa in , fa ti gu e, an xi et y, an d ag it at io n g as tr oi nt es ti na l- re la te d a e s ar e le ss pr om in en t w it h th e pa tc h: th e . m g/ hr pa tc h pr ov id es ef fi ca cy si m ila r to th at of th e hi gh es t do se of ca ps ul es , w it h ti m es fe w er re po rt s of na us ea an d vo m it in g h ig he r do sa ge s ar e m or e ef fi ca ci ou s th an lo w er do sa ge s n o la bo ra to ry m on it or in g is re qu ir ed g al an ta m in e (r az ad yn e) m ild to m od er at e a d t w ic e da ily , be gi nn in g w it h m g a ft er w ee ks , do sa ge is in cr ea se d to m g tw ic e da ily a n in cr ea se to m g tw ic e da ily ca n be co ns id er ed on an in di vi du al ba si s af te r as se ss m en t of cl in ic al be ne fi t an d to le ra bi lit y a ls o av ai la bl e in an ex te nd ed -r el ea se fo rm ul at io n th at ca n be ta ke n on ce da ily m os t co m m on si de ef fe ct s ar e na us ea , vo m it in g, an d di ar rh ea g as tr oi nt es ti na l- re la te d a e s ca n be m in im iz ed by ti tr at in g th e do sa ge gr ad ua lly an d ta ki ng th e m ed ic at io n w it h m ea ls n m d a an ta go ni st m em an ti ne (n am en da ) m od er at e to se ve re a d t w ic e da ily , be gi nn in g w it h m g, in cr ea si ng th e do se to m g tw ic e da ily ov er w ee ks a e s in cl ud e fa ti gu e, pa in , hy pe rt en si on , he ad ac he , co ns ti pa ti on , vo m it in g, ba ck pa in , so m no le nc e, di zz in es s m od er at e to se ve re a d m ay re sp on d be tt er w it h m em an ti ne /d on ep ez il co m bi na ti on ve rs us do ne pe zi l al on e a e , ad ve rs e ev en t; n m d a , n -m et hy l d -a sp ar ta te . jabfm may–june vol. no. http://www.jabfm.org o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ ad, donepezil treatment for weeks significantly reduced caregiver time spent assisting patients with basic and instrumental adls (� minutes/day; p � . ). a small study has demonstrated that rivastigmine treatment reduces caregiver time spent assisting with adls (up to hours over years). longer periods of treatment with cheis also decrease the risk for nursing home place- ment. , a retrospective analysis of a large us medical claims database showed that over a - month follow-up period, more patients who were not treated with cheis were placed in nursing homes ( . %) than were those who received ei- ther rivastigmine ( . %) or donepezil ( . %). these studies suggest that cheis enable patients to live longer in community settings with associated personal, social, and economic benefits. memantine (namenda, forest pharmaceuticals, st. louis, mo) is sometimes used to treat patients with less severe disease, despite its use in early ad not being supported by the fda. although me- mantine has been reported to improve cognition, global status, and behavior in patients with mild to moderate ad, its mechanism of action would sug- gest that it does not have a place in early ad. me- mantine is not a chei; it is a low- to moderate- affinity, noncompetitive (channel blocking), nmda- receptor antagonist that seems to block pathologic neural toxicity associated with prolonged glutamate release. blockade of nmda receptors by meman- tine could confer disease-modifying activity in ad by inhibiting the “weak” nmda receptor– dependent excitotoxicity that contributes to the neuronal loss underlying the progression of dementia. as such, memantine is not effective until weakened neurons become vulnerable to glutamate-induced excitotoxic- ity, and therefore it cannot substitute for cheis be- cause of its inability to enhance cholinergic neu- rotransmission required for memory and learning. moderate to severe disease memantine is approved for the treatment of mod- erate to severe ad on the basis of a study in which patients with moderate to severe ad who received mg memantine monotherapy showed less decline in cognition and function while maintaining good tolerability after months compared with those who received placebo. the chei donepezil also recently has been approved for use in severe ad. recently, donepezil mg/day has been ap- proved for the treatment of moderate to severe ad. results from a -week, randomized, double-blind study reported that donepezil mg/day was asso- ciated with greater benefits in cognition (as assessed by the severe impairment battery) compared with donepezil mg/day, although the between-treat- ment difference in the clinician’s interview-based impression of change plus caregiver input scale was not significant. the most commonly reported side effects with donepezil mg/day were nausea vomiting, and diarrhea, which occurred at a higher incidence than with donepezil mg/day. combination therapy of a chei and memantine is rational from a pharmacologic perspective be- cause the agents have different mechanisms of ac- tion. in a randomized controlled trial, patients with moderate to severe ad who were already receiving donepezil derived significant benefit from the ad- dition of memantine in terms of cognition, adls, global outcome, and behavior. there are also economic benefits associated with the addition of memantine to donepezil treatment for patients with advanced ad. a recent study demonstrated improvement in clinical outcomes plus cost savings associated with the use of memantine. in a study by tariot et al, the incidence of nausea was sub- stantially lower in patients receiving memantine add-on therapy compared with those receiving donepezil monotherapy. the safety and tolerability of combining rivastigmine capsule and memantine also has been studied in a -week, prospective, open-label study of patients with moderate ad. the combination was found to be both tolerable and safe, with a reduced incidence of gastrointesti- nal-related aes compared with those documented in the us prescribing information for rivastigmine, suggesting that this beneficial effect of memantine may be applicable across cheis. adjuncts to pharmacotherapy for improving cognitive function a recent study has demonstrated that chei-treated patients with early ad who received psychosocial support plus cognitive-motor intervention (cmi) had additional mood and cognitive benefits over those experienced by chei-treated patients who received psychosocial support alone. the cmi consisted of a -year structured program of sessions, including reality orientation techniques, cognitive exercises, training of adls, and psy- chomotor exercises. cognitive exercises were de- signed to stimulate memory, attention, language, doi: . /jabfm. . . guidelines for the management of dementia o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ visuospatial abilities, calculation, and frontal/exec- utive functions. the adl training was related to the particular cognitive function stimulated at each session (eg, money handling was trained after cal- culation exercises). the results showed that pa- tients in the cmi group maintained cognitive sta- tus at months, whereas patients in the control group had significantly declined by that time. in addition, more patients who received cmi main- tained or improved their affective status after year (cmi group, %; control group, %). treatment guidelines in , a panel of leading experts published rec- ommendations for best practice in the treatment and management of ad. these recommendations were developed in an effort to address issues sur- rounding early diagnosis, treatment, and care man- agement of ad, as well as societal and managed- care implications. an algorithm was created to assist providers with the appropriate utilization of therapy and care management (figure ). this al- gorithm recommends initiating chei therapy in patients with mild ad and using combination ther- apy with a chei and memantine for patients who progress from mild to moderate ad. alternatively, global guidelines recommend that patients who continue on the drug should be reviewed every months by mmse score and global, functional, and behavioral assessment. treatment should be con- tinued only while the patient’s mmse score re- mains � points and their global, functional, and behavioral condition indicates that the drug is hav- ing a worthwhile effect. in patients with moderate to severe ad (mmse score � ), treatment with memantine can be considered, alone or in combi- nation with a chei. managing mood disorders and behavior problems traditionally, cognitive function has been the main focus of interest in treatment and research of peo- figure . treatment and management of alzheimer disease. *memory complaint may be raised by family or caregiver. all patients aged > years should be screened regardless of clinical presentation. †cholinesterase inhibitors (cheis) are included for mild to moderate alzheimer disease, excluding donepezil, which is indicated for mild, moderate, and severe alzheimer disease. ‡possible causes include medical comorbidities, the effects of other drugs, behavioral disturbances, or delirium. §memantine is indicated for the treatment of moderate to severe alzheimer disease. (this treatment algorithm is derived from recommendations published in ref. . reproduced with permission from rg stefanacci. reinforcing the value of combination therapy to treat moderate to severe alzheimer’s disease. phys week ; ( ). © physician’s weekly, llc.) jabfm may–june vol. no. http://www.jabfm.org o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ ple with dementia. it is becoming increasingly rec- ognized, however, that noncognitive symptoms are those that are most disturbing to families and care- givers and may seriously impact not only the pa- tient’s well-being, but also the family’s, caregivers’, and providers’ approaches to managing the pa- tient. the most common symptoms are agitation, aggression, mood disorders/behavioral disturbance, apathy, depression, psychosis and hallucinations, with sexual disinhibition, elation/euphoria, appetite and eating disturbances, and abnormal vocaliza- tions occurring less frequently. , these have been grouped together under the umbrella term behavioral and psychological symptoms of dementia by the international psychogeriatric association. as the disease progresses, these symptoms become predominant problems and impose an enormous toll, both emotionally and financially. they are also a common reason for institutionalization of people with dementia and they increase the burden and stress of caregivers. , , nonpharmacologic interventions nonpharmacologic interventions are recom- mended as the most appropriate initial strategy for managing inappropriate behaviors in dementia be- cause ( ) they address the psychosocial/environ- mental underlying reason for the behavior, and ( ) they avoid the limitations of pharmacologic inter- ventions, namely, adverse side effects, drug– drug interactions, and limited efficacy. , , increased involvement of caregivers often has a secondary benefit of providing overburdened caregivers with an opportunity to receive support, information, and skills. furthermore, environmental factors (eg, con- fusing or noisy surroundings) or interpersonal factors (eg, arguing with the patient) are often the primary triggers of behavior problems. attention to these fac- tors through nonpharmacologic approaches can be effective in alleviating or preventing behavioral prob- lems in individuals with dementia and should be con- sidered first. , , a recent consensus statement rec- ommended that all treatment approaches start with rigorous attempts to identify any reversible causes of these behaviors and alleviate these factors by modifying the physical and interpersonal environ- ments. , common triggers of agitation and ag- gression include pain, fecal impaction, medical ill- ness, boredom, loneliness, depression, and social and environmental stressors. unfortunately, in practice, pharmacologic approaches involving neu- roleptic or other sedative medication are often used as the first-line treatment, despite the modest evi- dence of efficacy from clinical trials in which high placebo response rates frequently are seen. , patients with ad function best in an environ- ment that is safe, calm, and predictable, and their caregivers require ongoing support and education to develop realistic expectations throughout the course of the illness. caregivers can be taught strategies to reduce agitation and anxiety in pa- tients with dementia. one such strategy utilizes the rs approach (repeat, reassure, and redirect), whereby the caregiver repeats an instruction or answer to a question as needed and redirects the patient to another activity to divert attention from a problematic situation. a predictable routine also is important and may avert certain behavioral problems. for example, scheduled toileting or prompted void- ing can reduce urinary incontinence. training pro- grams for family caregivers of people with demen- tia, such as savvy caregiver, staff training in assisted-living residences caregivers, and re- sources for enhancing alzheimer’s caregiver health, have resulted in decreased agitation among people with dementia who live at home and re- duced feelings of burden and depression among family caregivers. – nonpharmacologic interventions can be as simple as redirecting and refocusing the patient, increasing social interaction, initiating enjoyable activities, estab- lishing regular sleep habits, eliminating sources of conflict and frustration (eg, activities that the pa- tient can no longer undertake), and establishing rewards for successes, however small (table ). the principles of person-centered care, which aims to treat people as unique individuals with their own personality and preferences, are essential in the nonpharmacologic management of individuals with ad. for example, a person’s religious back- ground may influence his or her behavior. patients of certain faiths may become agitated during inti- mate situations, such as bathing or dressing, when in the presence of caregivers who are of the oppo- site sex; a caregiver of the same sex may lead to improvement in behavior. the removal of any trig- gers of behavioral problems or the provision of comforting stimulation, such as the patient’s favor- ite music, also may be beneficial. the use of behavioral interventions in dementia is hindered by the fact that the patient’s cognitive functioning is declining progressively. as such, the doi: . /jabfm. . . guidelines for the management of dementia o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ effects of interventions must be monitored contin- ually and adjustments made over time in response to new behaviors that may emerge. in patients with disruptive and hard-to-treat behavioral prob- lems, referral to a behavioral specialist such as a geriatric psychiatrist should be considered. cognitive behavioral therapy over the past years there has been an increasing interest in applying therapeutic frameworks, such as cognitive behavioral therapy (cbt), cognitive stimulation therapy (cst), and interpersonal ther- apy to dementia. these therapies are designed to actively stimulate and engage people with demen- tia; group therapy, such as that used for cst, provides an optimal learning environment and the social benefits of a group and aims to create an environment in which people learn and strengthen their existing resources. the principles of person- centered care are essential when delivering cst for individuals with dementia; as such, group mem- bers often are assigned a role within the group according to their interests and abilities. during each themed session, there is a range of activities available, which allows the facilitator to adapt the level of difficulty of the activities depending on the group’s cognitive capabilities, interests, and gender mix; each individual can be provided with an activ- ity suitable for him or her personally. sessions for cst include physical games, sound and word as- sociation, and faces/scenes. individuals are asked to give their opinions rather than provide factual an- swers, and multisensory stimulation is used when possible. teri and gallagher-thompson re- ported positive findings from a clinical trial of cbt with individuals with early ad, and individual and group cbt also has been used with some favorable results. , a cbt perspective is appropriate for table . nonpharmacologic interventions for reducing behavioral disturbances in alzheimer disease (ad) , symptom response indecisiveness • reduce choices disorientation • provide the patient with a predictable routine (eg, exercise, meals, and bedtime should be routine and punctual) • avoid relocation; if necessary bring familiar items • allow the patient to dress in his or her own clothing and keep possessions • use calendars, clocks, labels, and newspapers for orientation to time • use color-coded or graphic labels (eg, on closets, table service, drawers) as cues for orientation in the home environment hallucinations • do not be overly concerned if they are not distressing to the patient • consider antipsychotic agents where necessary, but fully inform family and caregivers of the risks/benefits of these medications delusions • redirect and distract the patient • consider using antipsychotic medications repetitiveness • answer decisively, then distract lack of motivation • ensure tasks are simple so that the patient can complete them; break up complex tasks into smaller steps • before performing all procedures and activities, explain them to the patient in simple language wandering (usually occurs later in the disease, ie, moderate to severe ad) • register the patient in the alzheimer’s association safe return program • secure the environment with complex handles • equip doors and gates with safety locks • inform neighbors agitation • use distraction and redirection of activities to divert the patient from problematic situations • reduce excess stimulation and outings to crowded places (overexposure to environmental stimuli can lead to agitation and disorientation) • use lighting to reduce confusion and restlessness at night • avoid glare from windows and mirrors, noise from a television, and household clutter accident-prone • provide a safe environment (eg, no sharp-edged furniture, no slippery floors or throw rugs, no obtrusive electrical cords) • install grab bars by the toilet and in the shower ensure that comorbid conditions are optimally treated consider using a day care program for patients with ad jabfm may–june vol. no. http://www.jabfm.org o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ people with dementia because many of the behav- ioral difficulties encountered emerge through one or more of the following cognitive features: cogni- tive misinterpretations, biases, distortions, errone- ous problem-solving strategies, and communica- tion difficulties. put simply, many of the challenges posed by people with dementia are caused by their thinking style—the very thing that is addressed in cbt. cbt, therefore, offers a framework within which to understand the individual’s distressing ex- periences, and this understanding allows the clini- cian to target interventions more appropriately. pharmacologic interventions pharmacologic interventions are necessary when nonpharmacologic strategies fail to reduce behav- ioral symptoms sufficiently. patients treated with cheis, memantine, or both may also experience behavioral benefits in terms of reduced severity of existing behavioral disturbances and fewer new be- havior symptoms ; usually agitation/aggression and irritability show responsiveness to cheis, me- mantine, or both, whereas depression, apathy, and anxiety do not. if behavioral disturbances persist despite the use of cheis, memantine, or both, a psychotropic agent may be necessary. in accordance with the principles of geriatric psychiatry “start low and go slow, but go,” the psychotropic agent should be initiated in a low dosage and then increased slowly until an adequate response occurs or side effects emerge. after behavioral disturbances have been controlled for to months, the dosage of the psychotropic agent can be reduced periodically to determine whether continued pharmacotherapy is required. the choice of psychopharmacologic agent is determined by specific target symptoms; some behaviors, such as wandering and pacing, are not amenable to drug therapy. medications used to treat behavioral disturbances and mood disorders are summarized in table . atypical antipsychotics atypical antipsychotic drugs have been commonly used off-label in clinical practice for treatment of serious, dementia-associated agitation and aggres- sion, although they are not approved by the fda for such use. in addition, these agents have a black- box warning of increased mortality among elderly patients with dementia-related psychosis. a meta- analysis assessed the evidence for increased mortal- ity from atypical antipsychotic drug treatment for people with dementia. fifteen trials ( unpub- lished), generally to weeks in duration and including contrasts of atypical antipsychotic drugs with placebo, met criteria for inclusion (arip- iprazole [n � ], olanzapine [n � ], quetiapine [n � ], risperidone [n � ]; one trial was counted both as a risperidone trial and an olanzapine trial). a total of patients were randomized to study drug and were randomized to placebo. results demonstrated that atypical antipsychotics may be associated with a % increased risk of death from all causes, which is similar to older antipsychotics, but there was no obvious difference in risk between the agents. in general, drugs may be used only when nonpharmacologic approaches have failed to control serious behavioral disruption adequately within to days. members of a recent consen- sus conference, who are experts in the field of geriatric mental health, reviewed the available evi- dence regarding the safety and efficacy of antipsy- chotic drugs. they concluded that problems in clinical trial design may have contributed to the negative results reported and suggested that future studies be required to address the benefit–risk bal- ance in this patient population. nevertheless, the well-known incidence of side effects, such as seda- tion, falls, extrapyramidal signs, potential reduction in well-being and qol, and even possible accel- eration of cognitive decline, , , mean that the risk– benefit ratio must be considered carefully when prescribing these drugs to a generally frail population. if antipsychotics are indicated, then it is recommended that they are used at the lowest effective dose, with dosage reduced or treatment discontinuation considered on a regular basis. agitation agitation and psychosis are distressing and are likely to overwhelm the caregiver’s ability to cope. if behavioral and nonpharmacologic interventions are inadequate, mild agitation can be managed with low doses of medications, such as trazodone, car- bamazepine, and valproate. tricyclic antidepres- sants and benzodiazepines generally are avoided in this population. in patients with severe agitation and aggression, a recent consensus conference con- cluded that there is a need for an fda-approved indication for treating dementia-related symptoms of severe and persistent or recurrent agitation and doi: . /jabfm. . . guidelines for the management of dementia o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ table . pharmacologic treatment of behavior and mood disorders antipsychotic drugs atypical antipsychotic agents recommended uses: control of problematic delusions, hallucinations, severe psychomotor agitation, and combativeness general cautions: diminished risk of developing extrapyramidal symptoms and tardive dyskinesia compared with typical antipsychotic agents warning: atypical antipsychotic agents can cause an increased risk of cerebrovascular events (including stroke) in elderly patients with dementia-related psychosis risperidone (risperdal) initial dosage: . mg/day at bedtime; maximum dosage: – mg/day, usually twice daily in divided doses comments: current research supports use of low dosages; extrapyramidal symptoms may occur at mg/day olanzapine (zyprexa) initial dosage: . mg/day at bedtime; maximum dosage: mg/day, usually twice daily in divided doses comments: generally well tolerated quetiapine (seroquel) initial dosage: . mg twice daily; maximum dosage: mg twice daily comments: more sedating; beware of transient orthostasis typical antipsychotic agents recommended uses: control of problematic delusions, hallucinations, severe psychomotor agitation, and combativeness; second-line therapy for patients who cannot tolerate or who do not respond to atypical antipsychotic agents general cautions: current research suggests that these drugs be avoided if possible because they are associated with significant, often severe side effects involving the cholinergic, cardiovascular, and extrapyramidal systems; there is also an inherent risk of irreversible tardive dyskinesia, which can develop in % of elderly patients after continuous use of typical antipsychotic agents for years warning: typical antipsychotic agents can cause an increased risk of cerebrovascular events (including stroke) in elderly patients with dementia-related psychosis haloperidol (haldol), fluphenazine (prolixin), thiothixene (navane) dosage: varies by agent comments: anticipated extrapyramidal symptoms; if these symptoms occur, decrease dosage or switch to another agent; avoid use of benztropine (cogentin) or trihexyphenidyl (artane) trifluoperazine (stelazine), molindone (moban), perfenazine (trilafon), loxapine (loxitane) dosage: varies by agent comments: agents with “in-between” side- effect profile mood-stabilizing (anti-agitation) drugs recommended uses: control of problematic delusions, hallucinations, severe psychomotor agitation, and combativeness; useful alternatives to antipsychotic agents for control of severe agitated, repetitive, and combative behaviors general cautions: see comments about specific agents trazodone (desyrel) initial dosage: mg/day; maximum dosage: to mg/day in divided doses comments: use with caution in patients with premature ventricular contractions carbamazepine (tegretol) initial dosage: mg twice daily; titrate to therapeutic blood level ( – �g/ml) comments: monitor complete blood cell count and liver enzyme levels regularly; carbamazepine has problematic side effects divalproex sodium (depakote) initial dosage: mg twice daily; titrate to therapeutic blood level ( – �g/ml) comments: generally better tolerated than other mood stabilizers; monitor liver enzyme levels; monitor platelets, prothrombin time, and partial thromboplastin time as indicated anxiolytic drugs benzodiazepines recommended uses: management of insomnia, anxiety and agitation general cautions: regular use can lead to tolerance, addiction, depression and cognitive impairment; paradoxic agitations occurs in about % of patients treated with benzodiazepines; infrequent, low doses of agents with a short half-life are least problematic lorazepam (ativan), oxazepam (serax), temazepam (restoril), zolpidem (ambien), triazolam (halcion) dosage: varies by agent see general cautions continued jabfm may–june vol. no. http://www.jabfm.org o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ table . continued nonbenzodiazepines buspirone (buspar) initial dosage: mg twice daily; maximum dosage: mg times daily comments: useful only in patients with mild to moderate agitation; may take to weeks to become effective antidepressant drugs recommended uses: see comments on specific agents general cautions: selection of an antidepressant is usually based on previous treatment response, tolerance and the advantage of potential side effects (eg, sedation vs activation); a full therapeutic trial requires – weeks; as a rule, dosage is increased using increments of initial dose every – days until therapeutic benefits or significant side effects become apparent; after months, dosage reduction is used to reassess the need to medicate; discontinuing an antidepressant over – days limits withdrawal symptoms. note: patients with depression and psychosis require concomitant antipsychotic medications. tricyclic antidepressant agents desipramine (norpramin) initial dosage: – mg in the morning; maximum dosage: mg in the morning comments: tends to be activating (eg, reduces apathy); lower risk for cardiotoxic, hypotensive and anticholinergic effects; may cause tachycardia; blood levels may be helpful nortriptyline (pamelor) initial dosage: mg at bedtime; anticipated dosage range: – mg/ day (given twice daily) comments: tolerance profile is similar to that of desipramine, but nortriptyline tends to be more sedating; may be useful in patients with agitated depression and insomnia; therapeutic blood level “window” of – ng/ml ( – nmol/l) heterocyclic and noncyclic antidepressant agents nefazodone (serzone) initial dosage: mg twice daily; maximum dosage: – mg twice daily comments: effective, especially in patients with associated anxiety; reduced dose of coadministered alprazolam (xanax) or triazolam by %; monitor for hepatotoxicity buproprion (wellbutrin) initial dosage: . mg every morning, then increase by . mg every days; maximum dosage: mg twice daily comments: activating; possible rapid improvement of energy level; should not be used in agitated patients and those with seizure disorders; to minimize risk of insomnia, give second dose before pm mirtazapine (remeron) initial dosage: . mg at bedtime; maximum dosage: mg at bedtime comments: potent and well tolerated; promotes sleep, appetite, and weight gain ssris recommended uses: may prolong half-life of other drugs by inhibiting various cytochrome p isoenzymes general cautions: typical side effects include sweating, tremors, nervousness, insomnia or somnolence, dizziness, and various gastrointestinal and sexual disturbances fluoxetine (prozac) initial dosage: mg every other morning; maximum dosage: mg every morning comments: activating, very long half-life; side effects may not manifest for a few weeks paroxetine (paxil) initial dosage: mg/day; maximum dosage: mg/day (morning or evening) comments: less activating but more anticholinergic than other ssris sertraline (zoloft) initial dosage: – mg/day; maximum dosage: mg/day (morning or evening) comments: well tolerated; compared with other ssris, sertraline has less effect on metabolism of other medications citalopram (celexa) initial dosage: mg/day; maximum dosage: mg/day comments: well tolerated; some patients experience nausea and sleep disturbances fluvoxamine (luvox) initial dosage: mg twice daily; maximum dosage: mg twice daily comments: exercise caution when using fluvoxamine with alprazolam or triazolam reproduced with permission from cummings jl, et al. am fam physician ; : to . © american academy of family physicians. ssri, selective serotonin reuptake inhibitor. doi: . /jabfm. . . guidelines for the management of dementia o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ aggression, even in the absence of psychosis. se- lective serotonin reuptake inhibitors seem to have efficacy for treatment of agitation in patients with ad. studies have demonstrated benefits for agita- tion with citalopram compared with placebo and similar efficacy compared with risperidone. apathy apathy as a distinct psychiatric syndrome is an evolving concept but generally has been defined as poor initiation, impaired persistence, indifference, reduced emotional response, and low social en- gagement. although once believed to be just a symptom of depression, apathy is characterized pri- marily as a loss of motivation and reduced emo- tional reactivity, as opposed to depression, which is a mood disturbance. based on a limited but in- creasing body of evidence, methylphenidate seems to have some efficacy for the treatment of apathy in older adults with ad. depression depression is common in older adults, including those with ad, and often is undiagnosed and un- treated. the efficacy of antidepressants in patients with ad who also suffer depression has been dem- onstrated in clinical trial; the most useful medica- tions are those with minimal anticholinergic side effects. selective serotonin reuptake inhibitors, such as citalopram (celexa, forest laboratories, inc.) and sertraline (zoloft, pfizer, new york, ny), seem to be effective and have fewer side effects compared with other antidepressants; as such, they are considered the agents of choice for the treat- ment of depression in patients with dementia, al- though direct head-to-head studies have yet to be undertaken. , the needs of the caregiver caregivers can become exhausted and frustrated; suffer depression, anxiety, and health problems; and be at increased risk of death. , ideally, care- givers would receive assistance in caregiving, peri- odic assessment of their own health and welfare, support from family and friends, and respite care. one study has reported that the most consistently effective method of caregiver treatment interven- tions is to teach caregivers how to change or modify their interaction with the patient. mittelman and colleagues have demonstrated the effectiveness of long-term behavioral interven- tions for caregivers. caregivers of patients with ad often suffer from depression, and optimizing long- term social support (individual and family counsel- ing, the continuous availability of ad hoc counsel- ing, and support group participation) can have a significant impact on depression in caregivers. the same authors subsequently demonstrated that a program of counseling and support substantially increased the time spousal caregivers were able to care for ad patients at home. patients whose spouses received the intervention experienced a % reduction in the rate of nursing home place- ment compared with usual care controls, with a difference in time to placement of days. im- provements in caregivers’ satisfaction with social support, response to patient behavior problems, and symptoms of depression collectively accounted for % of the intervention’s beneficial impact on placement. , furthermore, these benefits were greatest in patients who had only mild dementia, when nursing home placement is generally least appropriate. , in the event that insufficient resources are avail- able to provide for and protect both patient and caregiver, nursing home placement needs to be considered. the progressive nature of dementia also must be emphasized, such that in the event of nursing home placement the caregiver does not consider it to be a failure on their part. discussing the benefits and disadvantages of institutional care with caregivers is often challenging. although con- sideration of the patient’s previously expressed wishes is essential, caregivers often feel constrained by comments made years earlier and believe that the patient would not accept long-term care. it can be helpful to remind caregivers that earlier com- ments were made without a full appreciation of the current circumstances and that expectations almost always change with chronic illnesses. future therapies cheis and memantine are symptomatic therapies that help maintain neuronal function but do not have a significant impact on the underlying disease process. their benefits are mild, and treatments that modify the disease course are urgently needed. , ad is the destruction of brain that cannot be regenerated, and any effective treatment jabfm may–june vol. no. http://www.jabfm.org o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ needs to start before much brain is destroyed. there recently has been intense research interest in characterizing the earliest stages of ad that pre- cede the crossing of the dementia threshold, de- fined by functional disability. such preclinical disease detection may allow earlier therapeutic in- tervention before critical numbers of neurons are lost. ad currently is thought to be a complex, mul- tifactorial syndrome, unlikely to arise from a single causal factor; instead, a number of related biologic alterations are thought to contribute to its patho- genesis. in light of this, drug combinations that can act at different levels of the neurotoxic cascade offer new avenues toward curing ad and other neuro- degenerative diseases. effective treatment will re- quire attacking multiple targets. at present, key therapeutic approaches include reduction of brain amyloid levels, , , prevention of � hyperphospho- rylation into intraneuronal neurofibrillary tan- gles, , and stimulation of muscarinic acetylcholine receptors, , although novel therapies increasingly are targeted to preserving energy metabolism in the mitochondria. – conclusion family physicians play a crucial role in the care of patients with ad in terms of early detection, timely intervention, and effective ongoing management. optimal management involves a multidimensional approach to treatment that includes the physician, geriatric care managers, social services, and the patient’s family. the treatment of ad consists of both pharmacologic and nonpharmacologic inter- ventions. nonpharmacologic interventions are recom- mended as the most appropriate initial strategy for managing problematic behaviors. patients with ad function best in an environment that is safe, calm, and predictable. interventions for improving be- havior include reduction of environmental stressors and strategies to reduce the agitation and anxiety of the patient. these interventions can be as simple as redirecting and refocusing the patient, increasing social interaction, establishing regular sleep habits, eliminating sources of conflict and frustration, and establishing rewards for successes, however small. the role and needs of the caregiver are important, and the effectiveness of long-term behavioral inter- ventions for caregivers has been demonstrated. in the absence of means to reverse the patho- logic processes of ad, the primary objectives of pharmacologic interventions are to preserve cogni- tive and functional ability, minimize behavioral dis- turbances, and slow disease progression. at present, four drugs are widely used to treat ad: cheis, which are first-line treatment for patients with mild to moderate ad, and an nmda antagonist ap- proved for treatment of moderate to severe ad. the authors would like to thank frances gambling for her editorial assistance with the manuscript. administrative, edito- rial, and technical assistance was funded by novartis pharma- ceuticals corporation. references . downs m, turner s, bryans m, et al. effectiveness of educational interventions in improving detection and management of dementia in primary care: clus- ter randomised controlled study. bmj ; : – 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serkova tp, kireeva eg, bachurin so. dimebon and tacrine inhibit neurotoxic action of beta-amyloid in culture and block l-type ca( �) channels. bull exp biol med ; : – . . bachurin so, shevtsova ep, kireeva eg, oxenkrug gf, sablin so. mitochondria as a target for neuro- toxins and neuroprotective agents. ann n y acad sci. ; : – . . doody rs, gavrilova si, sano m, et al. effect of dimebon on cognition, activities of daily living, be- haviour, and global function in patients with mild- to-moderate alzheimer’s disease: a randomised, dou- ble-blind, placebo-controlled study. lancet ; : – . . leifer bp. alzheimer’s disease: seeing the signs early. j am acad nurse pract ; : – . jabfm may–june vol. no. http://www.jabfm.org o n a p ril b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://w w w .ja b fm .o rg / j a m b o a rd f a m m e d : first p u b lish e d a s . /ja b fm . . . o n m a y . d o w n lo a d e d fro m http://www.jabfm.org/ dogs are a reservoir of ampicillin-resistant enterococcus faecium lineages associated with human infections applied and environmental microbiology, apr. , p. – vol. , no. - / /$ . � doi: . /aem. - copyright © , american society for microbiology. all rights reserved. dogs are a reservoir of ampicillin-resistant enterococcus faecium lineages associated with human infections� peter damborg, * janetta top, antoni p. a. hendrickx, susan dawson, rob j. l. willems, and luca guardabassi department of veterinary pathobiology, faculty of life sciences, university of copenhagen, frederiksberg c, denmark ; department of medical microbiology, university medical center utrecht, utrecht, the netherlands ; and national zoonosis centre, university of liverpool, neston, united kingdom received september /accepted february ampicillin resistance is a marker for hospital-associated enterococcus faecium. feces from dogs were selectively screened for the occurrence of ampicillin-resistant e. faecium (aref). aref was detected in ( %) of dogs screened in a cross-sectional study in the united kingdom and in ( %) of dogs studied longitudinally in denmark. aref carriage was intermittent in all dogs studied longitudinally. multilocus sequence typing of canine aref isolates revealed the presence of distinct sequence types. approximately % of the isolates belonged to hospital-adapted clonal complex (cc ), including those of sequence types st- and st- , which are widespread in european and asian hospitals. longitudinal screening of healthy humans living in contact with of the dogs under study resulted in the identification of a single, intermittent cc carrier. this person carried one of the sequence types (st- ) recovered from his dog. based on pcr and southern hybridization analyses, the putative virulence gene cluster from orf to orf was widespread in canine aref isolates (present in %), whereas orf (present in % of isolates) and orf (present in %) were strongly associated with cc -related sequence types (p < . ). surprisingly, esp and hyl were not detected in any of the isolates. the antimicrobial resistance profiles of canine aref isolates generally differed from those previously described for clinical human isolates. the results indicate that dogs are frequent carriers of cc -related lineages and may play a role in the spread of this nosocomial pathogen. the distinctive virulence and antimicrobial resistance profiles observed among canine aref isolates raise interesting questions about the origin and evolution of the strains causing human infections. enterococci are opportunistic pathogens and form part of the normal gastrointestinal flora in humans and animals. over the last two decades, nosocomial infections caused by entero- cocci have emerged and their incidence has increased rapidly, first in the united states and recently in europe ( , , ). although enterococcus faecalis is the causative agent in most enterococcal infections, a shift toward infections caused by multidrug-resistant e. faecium has been noted in the last years, and presently, up to one-third of enterococcal infections in some countries are attributed to this species ( ). this shift may be explained by changes in the patterns of antimicrobial usage, which may have resulted in the emergence of a distinct genogroup of hospital-associated ampicillin-resistant e. fae- cium (aref) strains, currently labeled clonal complex (cc ) ( ). cc isolates are characterized by resistance to ampicillin and fluoroquinolones, as well as by the presence in most isolates of putative virulence genes encoding the entero- coccal surface protein (esp) and hyaluronidase (hyl) and five recently described open reading frames (orfs; orf , orf . , orf . , orf , and orf ) encoding lpxtg surface pro- teins, which are found less frequently among other e. faecium lineages ( , , ). based on the results of multilocus sequence typing (mlst) ( ) and amplified fragment length polymorphism analysis ( ), e. faecium isolates of animal origin seem to be host specific and generally unrelated to human lineages of clinical importance. prior to this study, aref cc strains have been isolated only sporadically from animals, including pigs ( , ) and more recently dogs ( ). following these unexpected find- ings, the present study was designed to investigate the preva- lence and shedding patterns of aref in dogs. a cross-sec- tional study and two longitudinal studies involving a total of dogs and canine fecal samples were conducted in the united kingdom and in denmark, respectively. canine iso- lates were characterized by mlst, antimicrobial susceptibility testing, and putative virulence gene profiling to assess the genetic relationship between human and canine aref strains. materials and methods sampling. the occurrence of aref in dogs screened as part of a cross- sectional study in cheshire, united kingdom, in ( ) and in dogs studied longitudinally in the region of zealand, denmark, in was investigated. fecal samples or swabs from freshly voided feces were collected in sterile containers and submitted to the laboratory by the dog owners. samples were kept frozen at � °c whenever bacteriological analysis could not be performed within h after collection. samples from danish dogs were collected as part of two separate longitudinal studies investigating intrafamily bacterial transmission and antimi- crobial effects on fecal microflora, respectively. in the first longitudinal study (study a) (table ), samples from human and canine members of eight family households were obtained on occasions over a -month period. in the second longitudinal study (study b) (table ), samples from dogs with pyo- derma that were undergoing treatment with different �-lactam compounds (i.e., amoxicillin-clavulanic acid, cephalexin, and cefovecin) were collected at time points over the course of month. human samples consisted of rectal swabs. the * corresponding author. mailing address: department of disease biology, faculty of life sciences, university of copenhagen, stig- bøjlen , frederiksberg c, denmark. phone: . fax: . e-mail: peda@life.ku.dk. � published ahead of print on february . o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a e m .a sm .o rg / d o w n lo a d e d fro m https://crossmark.crossref.org/dialog/?doi= . /aem. - &domain=pdf&date_stamp= - - http://aem.asm.org/ protocol for obtaining samples from human participants was approved by the danish national committee on biomedical research ethics (license number h-kf- - ). bacterial isolation and identification. all fecal samples were streaked onto plates of slanetz-bartley agar (oxoid, basingstoke, united kingdom) supple- mented with �g/ml of ampicillin, and the plates were incubated for h at °c. one putative aref isolate from each culture-positive dog and human was randomly selected and identified by a species-specific pcr method ( ). isolates confirmed to be aref were subjected to further analyses. as part of longitu- dinal study b, total and relative numbers of putative aref bacteria in all culture-positive samples were determined in duplicate. one gram of feces was mixed in a stomacher with ml of sterile milli-q water. plate counts were then performed by streaking -fold dilutions of samples onto slanetz-bartley agar with and without ampicillin. following h of incubation at °c, putative aref bacteria and total enterococci on selective and nonselective plates, re- spectively, were counted, and bacterial concentrations (in cfu per gram) were calculated based on the plate counts. antimicrobial susceptibility. antimicrobial susceptibility testing was per- formed by the disk diffusion method according to the clsi breakpoints for isolates from humans ( ). disks with the following antimicrobials were used: ampicillin ( �g), ciprofloxacin ( �g), erythromycin ( �g), gentamicin ( �g), linezolid ( �g), quinupristin-dalfopristin ( �g), rifampin ( �g), tetra- cycline ( �g), and vancomycin ( �g). mlst. one aref isolate from each dog was chosen randomly and subjected to mlst according to the protocol described by homan et al. ( ). three isolates collected from a single dog (a ) at different sampling times were se- lected to get information on aref diversity over time. alleles were analyzed and sequence types (sts) were assigned using the database available at http: //www.mlst.net and the software clc combined workbench (clc bio a/s, aarhus, denmark). sts obtained for aref isolates were analyzed and com- pared to the entries in the existing e. faecium mlst database by using the eburst algorithm. new sts were classified as belonging to cc if they were single-locus variants of sts within this complex. detection of putative virulence genes. the presence of the genes esp, hyl, orf , orf , orf , orf , and orf was investigated by pcr using the primers and conditions described in previous studies ( , , ) with the excep- tion that template dna was extracted using the dneasy kit (qiagen inc., venlo, the netherlands). e. faecium e ( ) and e. faecium c ( ) were included as positive controls. the pcr results were confirmed by southern blot analysis. in brief, chromosomal dna was digested with ecori for h at °c and dna fragments were separated overnight on a % agarose gel. upon exposure to uv light for min, the gel was washed for min in . m hcl and then subjected to two separate -min washes in . m naoh. dna fragments were transferred onto a hybond n� nylon membrane by vacuum blotting, and the membrane was fixated in . m naoh for min and neutralized in � ssc ( � ssc is . m nacl plus . m sodium citrate). membranes were hybridized overnight at °c with a -ng probe. probes specific for each gene were amplified from the chromosomal dna of e. faecium strain do (accession no. aaak ), except those for esp and hyl, which were amplified from e. faecium e dna and e. faecium c dna, respectively. probes were purified using the qiaquick table . longitudinal carriage of putative aref strains in healthy dogs in longitudinal study a dog identification no. st of aref isolate or resulta for sample from day: a � � � � � � � � � a � � � � � � � � � � � � a � � � � � � � � � � � � a nr nr nr nr nr nr nr � � � � a � � � � � � � � � � � a � � � � � � � � � � � a � � � � � � � � � � � a � � � � � � � � � � � a � � � � � � � � � � � a � � � � � � � � � � � a � � � � � � � � � � � � a � � � � � � � � � � � a � � � � � � � � � � � a samples from healthy dogs (a to a ) from a family study were analyzed. numbers refer to sts of isolates verified as aref. �, putative aref isolate, not characterized; �, no growth on slanetz-bartley agar with ampicillin; nr, sample not received. table . longitudinal carriage of putative aref strains in dogs with pyoderma in longitudinal study b dog identification no. st of aref isolate or resulta for sample from day: b b � � � � � � � � � � � � � b b � � � � � � � � � � � � � � b b � � � � � � � � � � � � nr b c � � � � � � � � � nr � � � b c � � � � � � � � � nr � � � b c � nr - � � � � � � � � � � b c � � � � � � � � � � � � nr � b c � � nr � � � � nr nr � � � nr nr b d � nr � � � � � � � � � � � b d � � nr � � � � � � � nr � � b d nr � � � � � � � nr � nr � nr b d � � nr � � � � � nr nr nr � � a samples from dogs (b to b ) with pyoderma being treated with �-lactams were analyzed. numbers refer to sts of isolates verified as aref. �, putative aref isolate, not characterized; �, no growth on slanetz-bartley agar with ampicillin; nr, sample not received. b dog was treated daily with amoxicillin-clavulanic acid tablets from day until day . c dog was treated daily with cephalexin tablets from day until day . d dog was treated by cefovecin injection on day . vol. , enterococcus faecium clonal complex in dogs o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a e m .a sm .o rg / d o w n lo a d e d fro m http://aem.asm.org/ pcr purification kit (qiagen inc.). labeling with horseradish peroxidase, hy- bridization, and detection were done according to the instructions of the man- ufacturer of the enhanced chemiluminescence nucleic acid labeling kit (ge healthcare, diegem, belgium). the orfs orf and orf are not putative virulence genes since their products lack the typical n-terminal signal peptide sequence of cell wall-an- chored proteins (cwaps). isolates positive for these genes were therefore sub- jected to pcr amplification and sequencing of the regions at the orf -orf and orf -orf junctions to identify the possible existence of the merged orf . and orf . genes, which both encode potentially functional cwaps ( ). statistical analyses. geographical clustering of sts and statistically significant differences in the prevalence of virulence genes among cc and non-cc isolates were determined by comparing proportions in epicalc (version . [http://www.brixtonhealth.com]). nucleotide sequence accession number. the novel dna sequence identified in the junction region of orf . has been deposited in the genbank nucleotide sequence database under accession number fj . results aref prevalence in and patterns of shedding from dogs. a total of fecal samples and swabs from dogs were received and analyzed. presumptive aref was isolated from ( %) of the dogs screened as part of the cross-sectional study in the united kingdom. among the dogs evaluated longitudi- nally in denmark, dogs ( %) had at least one sample positive for a presumptive aref strain during the study pe- riod. the patterns of shedding from most of the dogs appeared to be extremely variable, as indicated by the intermittent de- tection of aref in their feces (tables and ). aref con- centrations in feces varied substantially among individuals and among samples collected from the same individual at different time points as part of longitudinal study b. total and relative numbers of putative aref bacteria varied from cfu/g and less than % of the total enterococci up to cfu/g and % of enterococci (data not shown). all presumptive canine aref isolates selected for further pheno- and genotypic char- acterization were confirmed to be e. faecium by pcr. overall, aref was detected at least once in ( %) of the dogs studied. a total of fecal samples were received from the healthy family household members who were screened concur- rently with their dogs in longitudinal study a. only one - year-old boy, living with dog a (table ), was positive for aref on a single occasion. antimicrobial susceptibility. ampicillin resistance was con- firmed for all isolates. more than half of the aref isolates tested displayed intermediate or full resistance to ciprofloxacin ( % of isolates), erythromycin ( %), tetracycline ( %), and rifampin ( %). lower prevalences of resistance toward cer- tain first- or second-line agents currently used for the treat- ment of enterococcal infections, such as gentamicin ( %), linezolid ( %), and streptogramins ( %), were observed. re- sistance to vancomycin was not detected. notably, only a small percentage of isolates were fully resistant to erythromycin (table ). mlst. mlst analysis of canine aref isolates (includ- ing from the same dog) revealed the occurrence of sts, including seven novel sts (st- to st- ) (table ). the most frequent clone was st- , which was found in isolates ( %) and was significantly associated with danish origin (p � . ). another common clone (st- ) was found solely in isolates from the united kingdom (p � . ). four sts (st- , st- , st- , and st- ) had been associated pre- viously with cc , and four of the novel sts (st- to st- ) were single-locus variants of st- and st- and there- fore also considered to belong to cc . overall, ( %) of the canine aref isolates belonged to cc (table ). the aref strain isolated from a -year-old boy belonged to the same st (st- ) previously detected in the boy’s dog. mlst analysis of two other isolates from the same dog (a ) revealed the presence of aref st- and st- on days and , respectively (table ). the genetic relatedness of sts to those listed in the central database (http://www.mlst.net) is depicted in fig. . occurrence of putative virulence genes. the results obtained by pcr and southern hybridization matched for all isolates. table shows the distributions of putative virulence genes in isolates classified as cc and non-cc strains. none of the analyzed canine isolates carried esp or hyl. the orfs orf , orf , and orf occurred simultaneously in iso- lates ( %) and were not statistically associated with cc . no variation in the sequence of the orf -orf junction region relative to the publicly available e. faecium do sequence was observed, indicating that orf and orf were not merged table . antimicrobial susceptibilities of canine aref isolates antimicrobial no. (%) of isolates susceptible intermediately resistant resistant ciprofloxacin ( ) ( ) ( ) erythromycin ( ) ( ) ( ) gentamicin ( ) ( ) linezolid ( ) ( ) ( ) quinupristin-dalfopristin ( ) ( ) ( ) rifampin ( ) ( ) ( ) tetracycline ( ) ( ) ( ) vancomycin ( ) table . multilocus sts of canine aref isolates genogroup st no. with indicated st among: united kingdom isolates (n � ) danish isolates (n � c) cc isolates (n � ) st- st- b st- st- st- a st- a b st- a st- a non-cc isolates st- (n � ) st- st- a st- a st- a a new st. b this result shows a significant association between the st and the country of origin (p � . ). c three danish isolates belonging to st- , st- , and st- originated from the same dog, whereas other isolates were from distinct dogs. damborg et al. appl. environ. microbiol. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a e m .a sm .o rg / d o w n lo a d e d fro m http://aem.asm.org/ into orf . in any of the canine isolates. a more diverse picture was evident from the sequencing of the orf -orf junction region; in isolates, the sequence was identical to that in e. faecium do; isolates had a -bp oligonucleotide deletion before the stop codon of orf , resulting in various premature stop codons; and isolates had a -bp oligonu- cleotide insertion (tttataacccgaattcatc) just be- fore the orf stop codon, which resulted in a frameshift and the merging of orf and orf into orf . , encoding an intact cwap. this -bp insertion was identical to one re- ported previously ( ) and occurred more commonly in non- cc isolates ( %) than in cc -isolates ( %) (table ). in contrast to the almost ubiquitously present orf -to-orf cluster, orf and orf were present in only isolates ( %) and isolates ( %), respectively, and both genes were significantly (p, . and . ) associated with cc . fur- thermore, orf was specific to st- and its two single-locus variants, st- and st- . discussion we describe for the first time the widespread occurrence of hospital-associated aref lineages in dogs. remarkably, two of the sts most frequently isolated from dogs (st- and st- ) are among the most common aref lineages causing infections in european and asian hospitals ( , , , ). this finding was surprising considering the general percep- tion that e. faecium strains are host specific and cluster ac- cording to the species of origin ( , ). approximately one in every four dogs harbored aref cc bacteria; hence, dogs seem to be an important reservoir for these bacteria of medical interest. on the contrary, only of the healthy humans tested was found to be positive for e. faecium. one previous study failed to detect aref in healthy humans despite the use of selective isolation media ( ). however, the human carriage rate observed needs to be confirmed on a larger scale, since the low community prevalences of aref among healthy people ( to %) reported in other studies ( , , , ) might be influ- enced by the use of nonselective isolation methods. aref cc has spread rapidly in hospitals across the world ( , , ). the widespread occurrence of st- , st- , and other cc -related clones in dogs is worrisome since these animals may provide a vehicle for the spread of aref among humans. in line with this hypothesis, aref isolates displaying the same st (st- ), virulence level, and resistance pattern were obtained from a dog and a boy living within the same household. we were informed that the boy had close contact with the dog and that this contact included frequent kissing fig. . clustering of the mlst profiles as depicted by the eburst algorithm. the mlst profiles identified for canine isolates are indicated by arrows in the figure, which is based on mlst profiles of , e. faecium isolates from the central database (http://www.mlst.net). each st is represented as a node; the size of each node indicates the relative frequency of a particular st. each line indicates a single-locus difference between sts. table . distribution of putative virulence genes among canine aref isolates gene occurrence (no. �%	 of isolates with gene) in: cc group (n � ) non-cc group (n � ) esp hyl orf b ( ) ( ) orf . orf . ( ) ( ) orf ( )a orf ( )a a this result shows that the gene is significantly associated with cc isolates (p � . ). b all isolates positive for orf also contained orf and orf . vol. , enterococcus faecium clonal complex in dogs o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a e m .a sm .o rg / d o w n lo a d e d fro m http://aem.asm.org/ and petting. such a close relationship may have enhanced the opportunity for the transmission of the strain between the dog and the boy. possible links between canine and human patho- genic enterococci have been addressed previously by other authors; genetic similarities between vancomycin-resistant e. faecium isolates of canine and human origins were observed by willems et al. ( ) using amplified fragment length polymor- phism; a vancomycin-resistant e. faecalis isolate in a case of canine mastitis in new zealand, described by manson et al. ( ), displayed a pulsed-field gel electrophoresis profile indis- tinguishable from that of a common human pathogenic clone in new zealand. the putative virulence gene content of canine aref iso- lates differed considerably from that usually observed in cc isolates from human infections. in particular, two putative virulence genes associated with cc , esp and hyl ( , , ), were completely absent among canine aref isolates. simi- larly, orf and orf occurred less frequently (in � % of isolates) than previously reported for human vancomycin-re- sistant and -sensitive cc isolates ( % of which carried the genes) ( ). the difference between canine and human clinical isolates may reflect an evolutionary multistep process during which e. faecium cc sequentially acquired a number of virulence and antibiotic resistance properties before becom- ing the most successful hospital-adapted lineage. as previously suggested by leavis et al. ( ), ampicillin resistance is likely one of the first properties that was acquired by a diverse group of clones and lineages currently included within cc . canine aref isolates may therefore represent an early evolutionary ancestor of human clinical cc strains, which may have evolved and adapted to hospital environments by acquiring virulence genes such as esp and hyl. alternatively, human aref strains may be ancestors of canine strains, which may have evolved by the loss of these putative virulence factors outside hospital settings. the observation that the orf -to- orf gene cluster was present in almost all canine aref isolates, irrespective of their genetic backgrounds, suggests that the acquisition of this gene cluster may have been an early event in the evolutionary development of cc . it is notewor- thy that the orf . fusion, resulting in a potentially functional cwap with similarities to the biofilm enhancer in enterococ- cus protein of e. faecalis, was predominant in non-cc isolates and generally occurred more frequently in canine aref isolates ( %) than previously reported for human aref isolates ( %) ( ). this finding suggests that the gene cluster became partly obsolete upon the transmission of e. faecium to humans and may have a minor role in the patho- genesis of human e. faecium infections. despite the atypical putative virulence gene profile of canine isolates, the virulence and thereby the potential of canine isolates to cause human infections should not be underestimated, since esp and hyl occur only in a proportion of human aref cc strains ( , , ) and may therefore not be necessary for establishing infection in the human host. in addition, orf and orf occurred more or less specifically in st- , suggesting that the most common st in dogs may also be one of the most patho- genic. data on shedding patterns were obtained by the longitudinal studies conducted on dogs in denmark. although % of the danish dogs carried aref at least once during the study period of to months, none of the dogs were found to be positive at all sampling times (tables and ). this result suggests that the enterococcal flora in dogs is subject to fre- quent shifts and that most dogs are only transiently colonized with aref or that aref colonization dropped below the detection level. plate counts performed as part of longitudinal study b indicated a high degree of variation in the concentra- tions of aref bacteria among and within dogs screened at different time points. this variability suggests that the inclusion of a preenrichment step to enhance the detection of aref in dogs may be advisable. interestingly, dogs appear to shed dis- tinct aref strains over time, as indicated by dog a ’s being colonized by three distinct sts (st- , st- , and st ) over a period of months (table ). the levels of resistance of canine aref strains to some of the most clinically relevant antimicrobials were relatively low (table ). most importantly, vancomycin resistance was not detected and high-level gentamicin resistance was rare (occur- ring in % of isolates). both vancomycin and gentamicin are first-line drugs for the treatment of enterococcal diseases, ei- ther separately or in combination with �-lactams ( ). two of the most frequently used second-line drugs, linezolid and streptogramins, were also included in our panel, and the ma- jority of isolates ( %) were susceptible to both agents. ca- nine isolates displayed some atypical resistance patterns in comparison with data previously reported for cc isolates from human infections, including vancomycin-resistant and -sus- ceptible variants ( , , ). in particular, the prevalences of macrolide and streptogramin resistance were low ( and %, respectively) whereas the frequency of tetracycline resistance was unexpectedly high ( %). high-level resistance to fluoro- quinolones was not as common as that reported previously for human cc isolates ( ). altogether, these differences sup- port the notion that human and canine aref strains may represent two distinct bacterial populations, despite the ge- netic similarities observed by mlst. in conclusion, healthy dogs are frequent carriers of human hospital-associated aref cc . dogs may therefore play a role in the spread of this nosocomial pathogen in the commu- nity, and a risk of zoonotic transfer exists, as indicated by the possible case of transmission between a boy and his dog. al- though the distinct putative virulence gene profiles suggest that canine isolates represent early evolutionary ancestors of hu- man pathogenic strains, further research is needed to assess the virulence of canine strains in comparison with that of human strains and, more generally, to quantify the magnitude of this possible emerging zoonotic problem. the centers for disease control and prevention have stated immunocompro- mised groups, for example, people with human immunodefi- ciency virus infection, organ transplant patients, and young children, to be at risk for infection with canine zoonotic agents (http://www.cdc.gov/healthypets/animals/dogs.htm). the pro- fessional use of pets to promote the recovery of patients (pet therapy) may pose a risk to such patients if the dogs are not previously screened for the presence of aref and other zoo- notic pathogens. the occurrence of aref in dogs and other domestic animals could be addressed by national programs for the surveillance of antimicrobial resistance in animals in order to explore the importance of the animal reservoir in the evo- lution of human hospital-associated enterococci. damborg et al. appl. environ. microbiol. o n a p ril , a t c a r n e g ie m e l l o n u n iv l ib r h ttp ://a e m .a sm .o rg / d o w n lo a d e d fro m http://aem.asm.org/ acknowledgments we thank nina b. thomsen for processing samples from dogs in longitudinal study b. we also thank nicola j. williams at the national zoonosis centre in liverpool for fruitful collaboration and for providing access to the 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r h ttp ://a e m .a sm .o rg / d o w n lo a d e d fro m http://aem.asm.org/ impact and cost-effectiveness of care farms on health and well-being of offenders on probation: a pilot study this is a repository copy of impact and cost-effectiveness of care farms on health and well-being of offenders on probation: a pilot study. white rose research online url for this paper: http://eprints.whiterose.ac.uk/ / version: published version article: elsey, h. orcid.org/ - - - , bragg, r. orcid.org/ - - - , elings, m. orcid.org/ - - - et al. 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economics, university of leeds, leeds, uk nhs e-referral service, health digital services, nhs digital, leeds, uk york trials unit, department of health sciences, university of york, york, uk nutritional epidemiology group, university of leeds, leeds, uk *corresponding author declared competing interests of authors: none disclaimer: this report contains transcripts of interviews conducted in the course of the research, or similar, and may contain language which offends some readers. published february doi: . /phr this report should be referenced as follows: elsey h, bragg r, elings m, brennan c, farragher t, tubeuf s, et al. impact and cost-effectiveness of care farms on health and well-being of offenders on probation: a pilot study. public health res ; ( ). public health research issn - (print) issn - x (online) this journal is a member of and subscribes to the principles of the committee on publication ethics (cope) (www.publicationethics.org/). editorial contact: 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research fellow, york trials unit, department of health sciences, university of york, uk professor william mcguire professor of child health, hull york medical school, university of york, uk professor geoffrey meads professor of wellbeing research, university of winchester, uk professor john norrie chair in medical statistics, university of edinburgh, uk professor john powell consultant clinical adviser, national institute for health and care excellence (nice), uk professor james raftery professor of health technology assessment, wessex institute, faculty of medicine, university of southampton, uk dr rob riemsma reviews manager, kleijnen systematic reviews ltd, uk professor helen roberts professor of child health research, ucl institute of child health, uk professor jonathan ross professor of sexual health and hiv, university hospital birmingham, uk professor helen snooks professor of health services research, institute of life science, college of medicine, swansea university, uk professor jim thornton professor of obstetrics and gynaecology, faculty of medicine and health sciences, university of nottingham, uk professor martin underwood director, warwick clinical trials unit, warwick medical school, university of warwick, uk please visit the website for a list of members of the nihr journals library board: www.journalslibrary.nihr.ac.uk/about/editors editorial contact: journals.library@nihr.ac.uk nihr journals library www.journalslibrary.nihr.ac.uk abstract impact and cost-effectiveness of care farms on health and well-being of offenders on probation: a pilot study helen elsey, * rachel bragg, marjolein elings, cathy brennan, tracey farragher, sandy tubeuf, rochelle gold, darren shickle, nyantara wickramasekera, zoe richardson, janet cade and jenni murray academic unit of public health, university of leeds, leeds, uk essex sustainability institute, university of essex, colchester, uk plant research international, wageningen university, wageningen, the netherlands academic unit of health economics, university of leeds, leeds, uk nhs e-referral service, health digital services, nhs digital, leeds, uk york trials unit, department of health sciences, university of york, york, uk nutritional epidemiology group, university of leeds, leeds, uk *corresponding author h.elsey@leeds.ac.uk background: care farms (cfs), in which all or part of the farm is used for therapeutic purposes, show potential for improving well-being for disadvantaged groups. we assessed the feasibility of determining the cost-effectiveness of cfs in improving quality of life compared with comparator sites among probationers undertaking community orders (cos). objectives: ( ) to conduct a systematic review of cf impacts and mechanisms in improving health and logic model development; ( ) to inform future studies by estimating differences in quality of life and other outcomes, identifying factors driving co allocation and ways to maximise recruitment and follow-up; and ( ) to assess feasibility of cost-effectiveness analysis. review methods: a mixed-methods synthesis following campbell collaboration guidelines. pilot study: three probation service regions in england, each with a cf and a comparator co site. participants were adult offenders (aged ≥ years) serving cos. the primary outcome was quality of life [as measured via the clinical outcome in routine evaluation–outcome measure (core-om)]. other outcomes were health behaviours, mental well-being, connectedness to nature and reconvictions. data sources: in november , we searched health, education, environmental, criminal justice and social science electronic databases, databases of grey literature and care farming websites across europe. there were no language restrictions. a full list of databases searched is given in appendix ; some examples include web of science, cumulative index to nursing and allied health literature (via ebscohost), the campbell library, criminal justice abstracts (via ebscohost), medline (via ovid) and scopus (elsevier b.v., amsterdam, the netherlands). results: our systematic review identified articles: qualitative, quantitative and one mixed- methods study. small sample sizes and poor design meant that all were rated as being at a high risk of bias. components of cfs that potentially improve health are being in a group, the role of the farmer and meaningful work, and interaction with animals. there was a lack of quantitative evidence indicating that cfs improve quality of life and there was weak evidence of improved mental health, self-efficacy, self- esteem, affect and mood. in the pilot study we recruited respondents, and only declined; % doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. v were allocated to three cfs and the remainder to comparators. this was below our recruitment target of . recruitment proved challenging as a result of the changes in probation (probation trusts were disbanded in ) and closure of one cf. we found significant differences between cfs and comparator users: those at cfs were more likely to be male, smokers, substance users, at higher risk of reoffending (a confounder) and have more missing core-om questions. despite these differences, the use of propensity analysis facilitated comparison. participants consented to our team accessing, and we were able to link, probation and police reconviction data for % of respondents. we gained follow-up questionnaire data from % of respondents, including health and social care use cost data. we transformed core-om into core- d, allowing derivation of quality-adjusted life-years. as a pilot, our study was not powered to identify significant differences in outcomes. qualitatively, we observed that within cos, cfs can be formally recognised as rehabilitative but in practice can be seen as punitive. limitations: changes in probation presented many challenges that limited recruitment and collection of cost data. conclusions: recruitment is likely to be feasible in a more stable probation environment. retention among probationers is challenging but assessing reconvictions from existing data is feasible. we found worse health and risk of reoffending among offenders at cfs, reflecting the use of cfs by probation to manage challenging offenders. future work: a sufficiently powered natural experiment is feasible and of value. using reconvictions (from police data) as a primary outcome is one solution to challenges with retention. propensity analysis provides a viable method for comparison despite differences in participants at cfs and comparator sites. however, future work is dependent on stability and support for cfs within probation services. study registration: this study is registered as prospero crd and sw – (the campbell collaboration). funding details: the national institute for health research public health research programme. abstract nihr journals library www.journalslibrary.nihr.ac.uk vi contents list of tables xi list of figures xiii list of abbreviations xv plain english summary xvii scientific summary xix chapter background to study defining care farming green care how care farming works the need for a study rationale for the study aims and objectives public involvement about this report chapter the impact of care farms on quality of life among disadvantaged populations: a systematic review introduction, aims and objectives methods selection criteria outcomes identification of studies study selection, data extraction and management quality assessments measures of treatment effect assessment of reporting biases data synthesis findings characteristics of included studies quality assessments the logic models testing the logic models summary chapter the pilot study: background and methods objectives care farming and probation service users community orders and the role of care farming changes to probation services and impact on the research target population, sample sizes and timelines outcome measures recruitment and follow-up plan doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. vii approvals bespoke study documentation development of the study procedures within the participating centres centre local service configuration and identification of target groups settings recruitment set-up centre-specific changes and their impact on the study barriers to, and enablers of, project administration centre local service configuration and identification of target group settings comparator recruitment set-up centre-specific changes and their impact on the study centre local service configuration and identification of target groups settings meeting our recruitment targets centre-specific changes and their impact on the study barriers to and enablers of project administration data acquisition across all centres probation service user demographics and community order data reconviction data statistical methods chapter results of the pilot study description of sample: characteristics of respondents loss to follow-up with reasons follow-up and outcomes clinical outcome in routine evaluation–outcome measure results warwick–edinburgh mental health and well-being scale connectedness to nature scale health and lifestyle health and social service use reconvictions seasonality discussion of statistical methods summary chapter economic evaluation economic evaluation of care farms: a review of the evidence introduction and aims methods results summary of the evidence the impact of care farms on health-related quality of life: a systematic review introduction and aims methods results summary of the evidence contents nihr journals library www.journalslibrary.nihr.ac.uk viii cost of crime: a systematic review aims and objective methods results summary of the evidence analysis of key parameters for a future cost-effectiveness analysis introduction methods results summary chapter the qualitative study introduction methods identification and recruitment topic guide interviewing and analysis ethics findings characteristics of sample general findings themes development of a logic model on care farming for probation service users summary chapter discussion and conclusions systematic review evaluating the impacts of care farms maximising recruitment, data collection and follow-up collecting cost data and feasibility of measuring cost–utility feasibility of measuring differences in effectiveness between care farms and comparators understanding community order allocation logic model of mechanisms for change among probation service users strengths and limitations of the research recommendations for future research recommendations for practice acknowledgements references appendix search strategy for the quality-of-life systematic review appendix preferred reporting items for systematic reviews and meta-analyses checklist for the care farm mixed-method systematic review appendix data sharing agreements appendix full tables from statistical analysis of pilot (see chapter ) appendix search strategy for cost-effectiveness systematic review appendix topic guides and coding frame from the qualitative study doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. ix appendix example electronic search: medline (via ovid) appendix questionnaires: clinical outcome in routine evaluation–outcome measure, warwick–edinburgh mental health and well-being scale, service use and connectedness to nature scale contents nihr journals library www.journalslibrary.nihr.ac.uk x list of tables table percentage of cfs in the uk supporting various vulnerable groups table characteristics of qualitative studies table characteristics of quantitative studies table quality assessment of qualitative studies table assessment of risk of bias in rcts table assessment of risk of bias in controlled before-and-after studies and uba studies table intervention categories according to service user group table categories of mechanism with descriptions table qualitative studies with categories of mechanisms and process outcomes table probation staff roles in the pilot study table baseline characteristics by co allocation table potential variables to be included in inverse probability weight table baseline characteristics by site table baseline characteristics of respondents by follow-up table follow-up characteristics of respondents by co allocation table ndelius and probation service user characteristics by co allocation table difference between co allocation in change in outcomes from baseline to follow-up: unadjusted and adjusted by baseline table reoffending rate within months by co allocation: unadjusted and adjusted by iptw table inverse probability treatment weight diagnostics table differences in co allocation by season table differences in baseline and follow-up characteristics by season table statistical power of outcomes table unit cost of health services and social services doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xi table medications table reported supervised user hours per study arm table mean core- d index score at baseline and -month follow-up by study arm table health services and social services usage in the past month table average costs of resources used within the past months by study arm table details of the interviewees table baseline characteristics by co allocation table baseline questionnaire responses by co allocation table baseline characteristics by site table baseline characteristics by follow-up table follow-up characteristics by co allocation table follow-up questionnaire responses by co allocation table qualitative coding framework list of tables nihr journals library www.journalslibrary.nihr.ac.uk xii list of figures figure a logic model on care farming for probation service users xxiii figure continuum of interaction with nature according to human needs figure preferred reporting items for systematic reviews and meta-analyses (prisma) flow diagram figure logic model for all service user groups figure logic model for combined mental ill health and substance misuse group figure logic model for disaffected youth group figure logic model for learning disabilities group figure types of requirements within cos figure the consolidated standards of reporting trials diagram (consort) flow diagram: recruitment and follow-up pathways in pilot study figure standardised difference in iptw of variables included figure flow diagram of excluded and included studies in hrqol review figure flow diagram of excluded and included studies cost of crime review figure logic model on care farming for probation service users figure timeline for data acquisition doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xiii list of abbreviations assia applied social sciences index and abstracts cf care farm ci confidence interval cinahl cumulative index to nursing and allied health literature co community order core-om clinical outcome in routine evaluation–outcome measure cp community payback crc community rehabilitation company ephpp effective public health practice project epoc effective practice and organisation of care eric education resources information center gp general practitioner hr human resources hrqol health-related quality of life imd index of multiple deprivation iptw inverse probability treatment weight iqr interquartile range isa information sharing agreement it information technology moj ministry of justice mrc medical research council noms national offender management service nps national probation service ogrs offender group reconviction scale pnc police national computer prisma preferred reporting items for systematic reviews and meta-analyses pssru personal social services research unit qaly quality-adjusted life-year ra research assistant rct randomised controlled trial sa specified activity scie social care online sci-expanded science citation index expanded sd standard deviation ssci social sciences citation index sub service user board uba uncontrolled before-and-after wemwbs warwick–edinburgh mental health and well-being scale doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xv plain english summary care farms (cfs) use all or part of a farm to provide health, social or educational care for differentpeople. our study assessed whether or not it is possible (feasible) to collect the data needed to see if cfs can benefit people serving community orders. we also synthesised existing research on the benefits of cfs. we found research articles; could be included. the quantitative evidence was limited but showed that cfs may improve mental well-being. we developed four diagrams showing how cfs may lead to improvements. our pilot study was conducted in three probation regions, each with a cf and another probation site. we recruited service users, fewer than our planned recruitment of . pilot studies are not normally designed to assess impact, so people were enough to assess feasibility. recruitment was challenging as a result of changes in probation and the closure of one cf. participants at cfs were more likely to be male, smokers and substance users, had a higher risk of reoffending and had more missing answers to questionnaire questions. despite these differences, the use of statistical analysis can facilitate comparison. we were able to follow up % of respondents and link probation and reconviction data to them for %. we collected health and social care use cost data. qualitatively, we found that some probation services emphasised cfs as rehabilitation and others emphasised them as punishment. changes in probation presented challenges, although recruitment may be feasible with stability in probation services. using existing reconvictions data is more feasible than following up participants to fill in questionnaires. cfs have potential to improve well-being; however, larger studies are needed to assess impact. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xvii scientific summary background care farming (also called social farming) has been defined as the use of commercial farms and agricultural landscapes to promote mental and physical health through normal farming activity. through a supervised, structured programme of farming-related activities, care farms (cfs) provide health, social or educational care services for a range of vulnerable groups. the type of farming activities (e.g. horticulture and livestock farming), other activities (e.g. gardening, conservation, woodwork and metal work) and well-being and skills interventions provided (e.g. health promotion, counselling and skills qualifications) differ across farms. a wide range of service users access cfs, including those with long-term conditions, such as dementia, depression, learning disabilities, substance misuse and behavioural issues, as well as probation service users. it is estimated that there are about cfs in the uk. the evidence for the effectiveness of care farming is relatively recent (within the last years). the complexities and multifaceted nature of cfs means that randomised controlled trial (rct) study designs are challenging. in the light of this, our study synthesised the published and unpublished literature using a mixed-methods systematic review design. in addition to this systematic review, we wanted to understand the feasibility of assessing the cost-effectiveness of cfs in improving quality of life. offenders (referred to here as probation service users) serving community orders (cos) are an important user group for cfs in the uk; % of cfs in england were working with probation in . in england, there is a policy emphasis on the use of cos, whereby those who have committed lower-risk offences are sentenced by court to serve their punitive order in the community rather than in prison. cos may be spent on a cf or other location, such as picking litter, cleaning-up public spaces or helping in a charity shop. randomly allocating service users to cf or comparator co location would not be acceptable within probation services, so a rct design is not appropriate. instead, we tested feasibility of a natural experiment using statistical analysis (propensity analysis) to account for differences between cfs and comparator locations. our study, therefore, aimed to ( ) synthesise existing evidence to better understand the impacts of cfs and ( ) establish the feasibility of conducting a future natural experiment to determine cost-effectiveness of cfs in improving quality of life and reducing reconvictions among probation service users serving cos. our research questions were: . what is the existing evidence of impact of cfs and potential mechanisms of impact for different groups? . how can recruitment of probation service users undertaking cos on cfs and in comparator settings be maximised? . what are the optimum ways to collect baseline and follow-up data, cost data and individual reconviction data from the police national computer (pnc)? . what are the impacts of cfs on probation service users’ lives and how appropriate are our measures in identifying changes in quality of life, health and well-being? . what is the extent of variation between the activities and approaches used on different cfs? . what is the influence of seasonality? . what are the potential confounders and how can these best be measured? . what is the feasibility of measuring key parameters to undertake a cost-effectiveness analysis of cfs in comparison with other co settings for probation service users? doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xix design and findings: systematic review to answer research question , we conducted a systematic review using a sequential exploratory approach to mixed-methods synthesis. this method identifies main concepts from theories, synthesising qualitative data to compare with the theoretical concepts and then interrogating the quantitative data to test any qualitative findings. methods in november , we searched health, education, environmental, criminal justice and social science electronic databases, databases of grey literature and care farming websites across europe. there were no language restrictions. a full list of databases searched is given in appendix ; some examples include web of science, cumulative index to nursing and allied health literature (via ebscohost), the campbell library, criminal justice abstracts (via ebscohost), medline (via ovid) and scopus (elsevier b.v., amsterdam, the netherlands). selection criteria we included a broad range of study designs: randomised and quasi-rcts; interrupted time series and non-randomised controlled observational studies; uncontrolled before-and-after studies; and qualitative studies. we excluded single-subject designs, reviews, overviews, surveys, commentaries and editorials. study participants were those who typically receive support at a cf, including people with mental ill health, people with learning difficulties, people with health problems, people with substance misuse, probation service users and disaffected youth. those attending for only a single day were excluded. data collection and analysis each screening stage involved two independent reviewers. studies that were potentially eligible after title and abstract screening underwent full-paper screening. disagreements were discussed and resolved by consensus at each stage. the preferred reporting items for systematic reviews and meta-analyses (prisma) guidelines were used to document the review process. we used an adapted version of the consolidated criteria for reporting qualitative research (coreq) tool to assess qualitative studies and the effective practice and organisation of care and effective public health practice project tools to assess the risk of bias in quantitative studies. no study was excluded based on quality. results our search methods identified articles, of which qualitative, quantitative and one mixed-methods study met the inclusion criteria. in addition, we identified theories quoted in connection with care farming. we created four logical models explaining how care farming may work for: ( ) all service user groups, ( ) people with mental ill health and substance misuse combined, ( ) disaffected youth and ( ) people with learning disabilities. these models comprised five key theoretical concepts (restorative effects of nature, being socially connected, personal growth, physical well-being and mental well-being), five cf components (being in a group, the farmer, the work, the animals and the setting) and categories of mechanisms (achievement and satisfaction, belonging and non-judgement, creating a new identity, distraction, feeling valued and respected, feeling safe, learning skills, meaningfulness, nurturing, physical well-being, reflection, social relationships, stimulation, structure and understanding the self). we identified different outcomes, both process (secondary) and primary, that we expected to find when testing the logic models against the quantitative studies. one key theoretical concept, ‘restorative effects of nature’, was under-represented in the intervention components and mechanisms reported within the qualitative studies. the types of mechanisms appeared to differ according to different service user groups, suggesting that care farming may work in different ways according to different needs. across the studies, different outcome measures were reported, and a number of studies reported results for mixed service user groups. we found no evidence to indicate that cfs improve quality of life and limited evidence that they might improve scientific summary nihr journals library www.journalslibrary.nihr.ac.uk xx depression and anxiety. there was some evidence to suggest that cfs can improve self-efficacy, self-esteem, affect and mood, with inconsistent evidence of benefit for social outcomes. all of the studies were rated as being at a high risk of bias. the results should be treated with caution. design and findings: the pilot study we tested the feasibility of conducting a future natural experiment to assess cost-effectiveness of cfs compared with other co sites in improving quality of life. as a pilot, the study was not powered to determine effectiveness, but designed instead to identify feasibility. setting the pilot study was conducted in three centres. each centre was a probation service region in england and included a cf, at least one comparator co project and the probation service. participants adult probation service users (aged ≥ years) serving a co. intervention the three centres in this study demonstrated the considerable range in types of cfs, with one social enterprise specialising in aquaponics, horticulture and skills building (centre ); a religious charity with emphasis on horticulture and maintenance (centre ); and one family-run cattle farm with a focus on rehabilitation (centre ). users at centre served their co at different locations and, unlike the other centres, were allocated to multiple sites during their co. in centre , probation services used the cf as a ‘specified activity (sa) requirement’ rather than an ‘unpaid hours’ co. comparator identifying suitable comparators sites was challenging. comparator users in centre were allocated to a charity warehouse sorting second-hand clothes, in centre we were unable to recruit comparator users and in centre comparator users attended locations that addressed a range of different sa requirements, including alcohol misuse, domestic violence, anger management and drink-driving. the primary outcome was quality of life derived from the clinical outcome in routine evaluation–outcome measure (core-om), from which a utility score can be valued and quality-adjusted life-years (qalys) derived. the items cover four dimensions: subjective well-being, problems/symptoms, life functioning and risk/harm. the full version of the questionnaire can be found on the core ims website (www.coreims. co.uk; accessed october ). the secondary outcomes were: l individual-level data on reconviction rates obtained from the pnc l mental well-being derived from the warwick–edinburgh mental health and well-being scale l measures of smoking, alcohol, drug use, diet and physical activity adapted from the general lifestyle survey and health survey of england l measures of the connectedness to nature l exploration of social and health resource use costs and health utility, as derived from core-om. all questionnaire outcomes were collected at the beginning of users’ co and at months. pnc data on reconvictions (i.e. offences that have received a court sentence) were collected at least months, and up to months, following co completion. we conducted a qualitative study to understand allocation decisions and differences in the use of cfs by probation services. we interviewed eight service users (all male because of the limited number of women allocated to cfs), care farmers (six in total: five male and one female) and probation staff (five: three male doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xxi http://www.coreims.co.uk http://www.coreims.co.uk and two female). all interviews were recorded and transcribed verbatim. we used a theoretically driven approach to analysis, testing our logic models derived from the systematic review. results we recruited respondents. this was below our recruitment target of . only % (n = ) of the probation service users approached declined to participate. recruitment proved challenging as a result of changes in probation (probation trusts were disbanded in may ) and the closure of one cf site. of those recruited, % attended the three cfs, although the remainder were at different comparator sites. differences in operations in each probation service required bespoke recruitment strategies. factors that aided recruitment and data collection included having a research assistant seconded from the probation services, having a co-investigator working at a senior level within a probation service, incentivising users by allowing time spent with the researchers to count towards their unpaid hours, including probation service users with multiple requirement orders, and recruiting at weekends as well as during the week. at baseline, we found significant differences between users allocated to cf and comparator sites in terms of the following: gender ( % of cf users were female compared with % of comparator users); risk of reoffending scores [as measured via the offender group reconviction scale (ogrs)] were points higher [ % confidence interval (ci) . to . points] among cf users; cf users had a percentage change of % ( % ci % to %) more missing core-om questions; substance use and smoking were % and % among cf users and % and % among comparators, respectively; and comparators found healthy foods preferable. these differences reflect the fact that, in at least one centre (centre ), users with a higher risk of reoffending were actively allocated to the cf. our qualitative findings highlighted that those responsible for allocation decisions within probation felt that cfs, unlike some of the comparator sites, were able to appropriately manage and support those with more complex needs and higher ogrs scores. the ogrs score is thus a key confounder to be considered in any future study. we were able to follow up % of participants. these participants were older, were more likely to be in national probation service rather than community rehabilitation company (crc), were non-smokers and used fewer substances and fewer health services than those not followed up. participants consented to, and we were able to, access and link the probation service and reconviction data for % of respondents. given the challenges and potential bias in following up probation service users to fill in questionnaires, the feasibility of using existing pnc data to assess reconvictions among our participants months (or more) after completing their co is a valuable finding to inform future studies. we were able to collect cost data on health and social care use and transform the core-om scores into core- d, allowing derivation of qalys. our qualitative study identified different uses of cfs as part of cos by probation services, with some formally recognising the cfs as rehabilitative and others misinterpreting them as punitive. by combining the findings from the qualitative study with existing theories on care farming and desistance, and the logic model developed from the review, we were able to construct a logic model specific to probation service users (figure a). only the process and final outcomes measured in the published studies included in the systematic review are shown in figure a. it is likely that outcomes identified for other user groups are relevant to probationers but, as they have not been assessed in the literature, they are not included in figure a. to gain service user involvement, we used an existing probation service user group. this limited involvement, establishing and supporting our own service user group, may have increased user engagement. scientific summary nihr journals library www.journalslibrary.nihr.ac.uk xxii intervention components mechanisms (linked to theoretical concepts) outcomesprocess outcomes confidence (t) self-esteem vocational skills (t) negative behaviours (t) + personal identity (t) physical health/nutrition reduction in anxiety (t) mental well-being: achievement and satisfaction; meaningfulness; feeling valued and respected; nurturing; distraction; feeling safe; structure to life; stimulation; and reflection personal growth: learning new skills; and creating a new identity being socially connected: social relationships; belonging/ non-judgement; and nurturing physical well-being (eating meals together) work: real and useful and hard work, motivating and engaging, and enabling skills acquisition animals: tasks involving animals break down macho personalities and learn to care the farmer: accepting and approachable. can be trusted, joins in activities. creating safety. practical support given being in a group: avoiding contact with those involved in discourse. trying to keep self to self. but having lunch together, working in small carefully selected groups the setting: escape from negative environments/public viewing figure a logic model on care farming for probation service users. t, theory based. d o i: . /p h r p u b l ic h e a l t h r e s e a r c h v o l . n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o . t h is w o rk w a s p ro d u ce d b y e lse y e t a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riva te re se a rch a n d stu d y a n d e xtra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro vid e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d ve rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls lib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e va lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n ive rsity o f s o u th a m p to n s cie n ce p a rk , s o u th a m p to n s o n s , u k . x x iii conclusions our study was conducted at a time of transformation within probation services. these system changes, rather than service user resistance, undermined recruitment to the study. we therefore conclude that recruitment would be feasible in a more stable probation environment. however, retention among probationers is challenging. using reconvictions as a main outcome measure, utilising existing police data rather than follow-up questionnaires, is one solution to retention challenges. we found significantly worse health and risk of reoffending among those at cfs, reflecting the use of cfs by probation to manage challenging offenders. propensity analysis provides a viable method for comparison despite differences in probationers at cfs and comparator sites. although randomisation is not possible within probation, a sufficiently powered natural experiment is feasible and would be of value to commissioners. our review identifies the aspects of care farming that may potentially improve health and well-being and our logic models present the mechanisms that may lead to the changes for different client groups. the limited quantitative evidence to test the impact of the mechanisms of health and well-being outcomes underlines the need for well-designed and -powered studies. the study provides lessons for the newly formed crcs, particularly on how to maximise the rehabilitative nature of co site allocations and to ensure that women have equal opportunities with men to benefit from the potential advantages of cfs. for care farmers, adapting activities and organisational culture to meet the needs of different service user groups may well be a way to improve outcomes for service users. consideration of how male-dominated environments may impact on the participation of women in care farming is an area that could be usefully addressed by cfs. study registration this study is registered as crd and sw – (the campbell collaboration). funding funding for this study was provided by the public health research programme of the national institute for health research. scientific summary nihr journals library www.journalslibrary.nihr.ac.uk xxiv chapter background to study defining care farming care farming (also known as social farming) has been defined as the use of commercial farms and agricultural landscapes as a base for promoting mental and physical health through normal farming activity. – a care farm (cf) utilises the whole or part of a farm to provide health, social or educational care services for different groups of people, providing a supervised, structured programme of farming-related activities rather than occasional one-off visits (www.carefarming.org.uk; accessed january ). care farming is a truly complex intervention. farms differ in the type of farming activities (e.g. horticulture and livestock farming), type of other activities (e.g. gardening, conservation and woodwork), the level of support provided (e.g. health promotion, counselling and skills qualifications) and the range of service user groups. a diverse range of activities can be offered to service users at a cf. activities selected are primarily determined by the particular needs and capabilities of the service user and the type of farm. likewise, depending on the service user group, they may or may not be involved in agricultural production. the main defining feature of a cf is the involvement in farm activities for a therapeutic purpose. it is not a horticultural- or animal-based therapy per se. individuals supported through care farming include those with learning difficulties, those with autism spectrum disorder, those with mental ill health, disaffected youth, people with physical disabilities, older people, people with drugs and alcohol problems, adult probation service users, people with dementia and ex-service personnel. in the uk, the largest service user groups are those with learning difficulties, those with autism spectrum disorder, those with mental ill health and disaffected youth (table ). green care care farming sits within a broader framework that describes our interactions with nature. these interactions can be viewed as a continuum that ranges from general everyday contact, such as viewing, working or undertaking recreational activities, through to using nature deliberately as a therapeutic or table percentage of cfs in the uk supporting various vulnerable groups supported group percentage of cfs learning difficulties autism spectrum disorder mental ill health excluded young people physical disabilities older people drug/alcohol history adult probation service users dementia ex-service personnel doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. http://www.carefarming.org.uk treatment resource (i.e. green care) involving activities, such as wilderness therapy, social and therapeutic horticulture, animal-assisted therapy and care farming (figure ). green care has been defined as ‘nature-based therapy or treatment interventions which are specifically designed, structured and facilitated for individuals with a defined need’. green care utilises plants, animals and landscapes to create interventions to improve health and well-being (i.e. it does not represent a casual encounter with nature). green care also provides care and support to enable people to reach their true potential; that is, although many of the approaches are termed ‘therapies’ or ‘therapeutic’, they are not necessarily directed at treating or curing conditions and diseases. in the case of people with learning difficulties, for example, green care provides care, support, training and other opportunities to enable those individuals to develop. such opportunities are often not available elsewhere. everyday life general population health promotion: nature-based activities general population green care: nature-based therapy or treatment intervention people with a defined need in te ra c ti n g w it h n a tu re e x p e ri e n c in g n a tu re gardening/horticulture (at home or work) social and therapeutic horticulture community food growing community gardening social and therapeutic horticulture community food growing (as a treatment intervention) horticultural therapy forestry, environmental conversation (at work or at home) environmental conservation groups environmental conservation (as a treatment intervention) ecotherapy farming community farming; city farms; and one-off cf visits care farming human–animal interactions animal-based recreation (e.g. dog walking, horse riding, etc.) animal-assisted activities animal-assisted therapy view from window (at home or work) restorative landscapes and gardens green exercise (e.g. walking, running cycling in nature, etc.) green exercise initiatives (e.g. walking for health) green exercise (as a treatment intervention) nature therapy wilderness therapy figure continuum of interaction with nature according to human needs. reproduced from bragg r, atkins g. a review of nature-based interventions for mental health care. natural england commissioned reports, number . york: natural england; . © natural england and other parties . contains public sector information licensed under the open government licence v . (www.nationalarchives.gov.uk/doc/open-government-licence/ version/ /). this report is published by natural england under the open government licence – oglv . for public sector information. you are encouraged to use, and reuse, information subject to certain conditions. for details of the licence visit http://publications.naturalengland.org.uk/copyright. background to study nihr journals library www.journalslibrary.nihr.ac.uk http://www.nationalarchives.gov.uk/doc/open-government-licence/version/ / http://www.nationalarchives.gov.uk/doc/open-government-licence/version/ / http://publications.naturalengland.org.uk/copyright how care farming works as a highly complex intervention comprising multiple activities and involving many service user groups with differing needs, it is likely that multiple mechanisms and interactions will be at work to bring about changes in individuals. at the core of the intervention is the connection with nature, which has value in its own right but also provides the platform for the range of activities. studies have also shown that connectedness to nature has a positive effect on people’s mental, physical and psychological well-being and spiritual beliefs , and that engaging in nature-based activities, such as farming or gardening, enables people to find solace. as a result, cfs may be beneficial for a wide range of service users. a number of theories have been mentioned within the care farming literature and some of these speak specifically to the nature element, such as the attention restoration theory and biophylia hypothesis. other theories relate specifically to the service user groups that attend cfs, for example desistence theory for probation service users and the recovery model for people with mental ill health. within these theories are the proposed mechanisms that explain how any effective intervention would be expected to bring about change. within the review we followed the medical research council (mrc)’s definition of a ‘mechanism of impact’, that is, ‘how intervention activities, and participants’ interactions with them, trigger change’ (p. ). therefore, identifying these mechanisms within the care farming interventions will provide the links required to understand outcomes. these mechanisms are detailed in the theories we assessed. for example, desistence theory suggests that interventions that lead to a reduction in recidivism involve building human relationships, opportunities for reflection and change, , developing self-efficacy – and social capital by learning and applying new skills to develop a new, more positive identity. , – a sense of community and the development of friendships are indeed valued aspects of a cf. furthermore, farmers are perceived as positive role models with a strong sense of identity, thus offering an essential positive figure that can be emulated through forming a new identity. both the concepts of building human relationships and creating a new identity are clearly present within care farming interventions. the need for a study green care plays a particularly important role in modern society. sitting within the third sector, they provide a type of support beyond that which can be provided by statutory health and social care organisations. utilisation of the third sector by statutory services appears to be increasing, as demonstrated by recent social prescribing initiatives. this has been driven partly by a capacity issue within health services relating to increasing life expectancies over the th century and an increasing prevalence of long-term conditions. however, it also relates to changing needs and demands of populations within modern societies. many of the problems presenting to health-care providers (often as the first point of contact) are complex and often are underpinned or exacerbated by social problems (such as poor education, poor housing, unemployment and social isolation) and the skills within health services to address these issues do not exist within this sector. likewise, among local authorities and probation there appears to be a recognised value in attending for social reasons, such as educational and employment needs and social interactions. thus, there is the potential for care farming to improve the health and well-being of different population groups. the number of cfs has been growing, particularly in europe, with an estimated cfs in the netherlands, over in the uk, in france, in belgium, in germany, in italy and in ireland. despite this growth, however, sustainability is a major challenge. funding comes from a variety of sources: charitable donations, private sector funding schemes, charity funding schemes, contracts with local authorities, clinical commissioning groups, probation services and through income generated from the sale of farm produce. a key part of the process of securing funding is providing evidence of benefit for health and social outcomes. although there is a growing body of evidence pointing to the benefits of nature-based interventions for a range of health-based doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. outcomes, – characteristically small sample sizes and a range of methodological limitations allow only tentative conclusions to be drawn. within care farming research specifically, there have been a number of observational studies published across europe and a small number of reviews , , and these studies document the extent and range of care farming initiatives and summarise the evidence for benefits. however, evidence gaps remain and these need to be addressed to ensure that commissioners and policy-makers understand how, and if, care farming is of benefit, and to which service user groups. rationale for the study health-care commissioners, in general, lack awareness and understanding about care farming. furthermore, they consider the lack of evidence on the clinical effectiveness and cost-effectiveness to be a barrier to commissioning. although cfs cater for a wide range of vulnerable population groups and the evidence on all service user groups is of interest, the main focus of this research is one service user group: probation service users undertaking community orders (cos). by removing the wide diversity in need, the activities and support provided on the farm would be considered less complex. furthermore, a single service user group enables an appropriate comparator group to be selected for the purposes of quantitative evaluation. given the limited quantitative studies with cf participants and with probation service users, there were many methodological questions that required answers before a larger study could be considered, thus a pilot study was proposed. the key questions posed were: . how can recruitment of probation service users undertaking cos on cfs and in comparator settings be maximised? . what are the optimum ways to collect baseline and follow-up data (while minimising dropout), cost data from cfs and probation trusts and individual reoffending data from the police national computer (pnc)? . what are the impacts of cfs on probation service users’ lives and how appropriate are the measures used in the pilot study for identifying changes in quality of life, health and well-being? . what is the extent of variation between the activities and approaches used on different cfs and the variation in outcomes for probation service users at different types of cf? . what is the influence of seasonality on decisions concerning the allocation of setting to serve a co, the activities on the cfs and the health and well-being of participants? . what factors may lead to selection bias and what are the potential confounders, particularly in terms of factors influencing allocation to cfs and other co settings, and how can these best be measured? . what is the feasibility of measuring key parameters of costs and quality-adjusted life-years (qalys) to conduct a future cost-effectiveness analysis of cfs in comparison with other co settings for probation service users? we formulated these questions into a series of objectives requiring a number of different methodological approaches within one study. in order to address the wider question regarding the evidence across all service user groups, we considered that a systematic literature review would clarify the extent of the evidence and highlight where key gaps remained. aims and objectives the aim of this pilot study was to build knowledge on the mechanisms through which cfs improve the health and well-being of adult probation service users undertaking cos and to explore the feasibility of assessing the cost-effectiveness of cfs in achieving these outcomes in a subsequent study. background to study nihr journals library www.journalslibrary.nihr.ac.uk specific objectives were to: . conduct a systematic review of published and grey literature evaluating the impacts and mechanisms within cfs and green care in improving the health and well-being of disadvantaged populations and the impacts of cos and costs of offending to society and health services. . identify factors that drive the decision of co allocation in order to identify potential selection bias and confounders as well as the most appropriate ways to collect data on these factors. . identify the most appropriate ways to gain informed consent, maximise recruitment and follow-up while minimising dropout and deliver questionnaires effectively among probation service users undertaking cos in cfs and comparator co settings. . identify the most appropriate ways to collect cost data, including health-care resource use by probation service users, cost of reoffending, costs of crime and gains of employability of probation service users in cfs and comparator co settings and explore the feasibility of measuring cost–utility. . identify differences in effectiveness in terms of quality of life, mental health, lifestyle behaviours and reoffending rates between the three cfs and between cfs and comparator settings in order to estimate variation and thus determine the intracluster correlation coefficient and sample size required in the follow-on study. . to develop a logic model based on probation service users’ experiences of serving their co on a cf and their perceptions of the impact the cf has on their lives and well-being, taking into consideration seasonal changes, to illustrate the possible mechanisms that lead to changes in health and well-being among probation service users undertaking cos on cfs. public involvement our aim was to involve a small number of ex-probation service users in the design and interpretation of the study, particularly in relation to the pilot study (see chapters and ) and the qualitative interviews (see chapter ). at the start of the study we were invited to an established service user board (sub) group comprising, and facilitated by, ex-probation service users with some staff also present. it was suggested that a researcher should attend the -monthly meetings so that a small part of the meeting could be dedicated to the study. during the meetings, there were between and service users in attendance. in total, we were invited to three meetings. early in the study, the service users contributed to the design of the questionnaire booklet containing the outcome measures, the information sheet and the consent form. they also advised us on what to expect when approaching some probation service users. we were cognisant that the sub ex-probation service users had previously spent time in prison and that they may not reflect those who had received a co. as explained in chapter , coincidental with the privatisation of probation services, the sub facilitator left and meetings stopped. during this time, we located and attended a separate sub meeting in a different town within the same probation service. the service users’ (three attended the meeting) and facilitators’ expectations of the research were quite different from its actual purpose and because we were not offering a new ‘service’, the group felt that they had other priorities for their meetings and we did not attend further sessions. service user engagement was therefore interrupted as we tried to identify who was responsible for the sub group in the original location. on establishing this, we found a new sub board in place comprising mostly staff and only two service users, which was a change in the dynamics of the group. interest and knowledge about the study had receded and we were required to outline the purposes of the study again. ultimately, little progress had been made from the very first visit and our early plans to involve service users in the qualitative work were not realised. on reflection, establishing our own group rather than tapping into an existing group may have, to some extent, militated against the impact that the privatisation of probation services had on the sub. our contacts within probation at the start of the study had advised us that volunteers were sparse and that attendance at an additional meeting (to that of the sub group) may be poor. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. about this report this report comprises four main sections representing the four main workstreams that address the objectives (see aims and objectives) outlined. l chapter presents the methods and findings from the systematic literature review on the effectiveness of care farming on quality of life for a range of vulnerable groups (objective ). one of the service user groups within the review is that of probation service users. the review does not include our own pilot study results, as these were not available at the time of conducting the review. we also present a number of developed logic models for particular service user groups but, as a result of the lack of studies, not one for probation service users. within objective , we also included a review of evidence guiding cost-effectiveness analysis. this covered a review of the costs of offending and a review of the impacts of care farming and green care on health-related quality of life (hrqol). these reviews are included in chapter . l chapter presents the methods for the pilot study, but also includes a summary of probation services and cos and how care farming fits within these. there is a further and important explanation of the major organisational changes that occurred in probation during the period of research and how these impacted on the study. as a consequence of these changes, some of our objectives could not be met in full. chapter addresses objectives , and , which are essentially about processes. l chapter presents the quantitative results for the pilot study, specifically addressing objective . l chapter presents the methods and findings of the reviews guiding cost-effectiveness analysis (objective ) and then reports the analysis of the key parameters of costs and utilities collected as part of the feasibility data that would be used for a larger study of cost-effectiveness of cfs in improving the quality of life of probation service users undertaking cos (objective ). l chapter presents the qualitative study, which involved interviewing probation service user managers regarding allocation decisions (objective ) and probation service users (objective ) as well as care farmers. owing to changes in probation services during the study and other issues that arose in relation to care farming, we were unable to obtain sufficient data to enable us to fully address objective . these factors will be explained in chapter . we considered our options and, based on our garnered knowledge regarding probation, we opted to interview a broader range of study participants to explore the role of care farming in probation. we considered that this would be most valuable to probation services going forward. l chapter presents a discussion chapter that brings together the findings from each of the previous chapters and outlines the implications for research and practice. background to study nihr journals library www.journalslibrary.nihr.ac.uk chapter the impact of care farms on quality of life among disadvantaged populations: a systematic review introduction, aims and objectives the protocol for this review was registered with the campbell collaboration (sw – ). the primary objective was to systematically review the available evidence of the effects of cfs on quality of life, health and social well-being on a wide range of service user groups. we aimed to synthesise the evidence in order to: . understand the size of the effect of cfs on the health, well-being or social outcomes of different population groups . examine whether or not effects differ depending on the activities and characteristics of the farm or farmer, the duration of time that participants spend at the farm, the number and diversity of the participants on the farm and whether or not the farm is the only intervention . understand the mechanisms of change for different population groups attending cfs using a range of study methodologies, including qualitative studies. the evidence for the effectiveness of care farming is relatively recent (within the last years). the complexities and multifaceted nature of cfs means that randomised controlled trial (rct) study designs are challenging. in the light of this, our study synthesised the published and unpublished literature using a mixed-methods systematic review design. the review is registered as prospero crd and sw – (the campbell collaboration). the full protocol can be found on the campbell collaboration website (www.campbellcollaboration.org/library/impact-of-care-farms-on-quality-of-life-different- population-groups.html; accessed october ). methods we conducted a mixed-methods synthesis using a sequential explanatory approach that involved the development of an intervention framework based on the theory and qualitative data with subsequent testing using the quantitative evidence. this approach is valuable in identifying possible mechanisms of change to inform the development of a logic model for care farming. we based the design of our logic models on the description and definitions provided by the mrc’s guidance for process evaluation of complex interventions. here, a logic model is defined as: a diagrammatic representation of an intervention, describing anticipated delivery mechanisms (e.g. how resources will be applied to ensure implementation), intervention components (what is to be implemented), mechanisms of impact (the mechanisms through which an intervention will work) and intended outcomes. reproduced from moore et al. (p. ). this is an open access article distributed in accordance with the terms of the creative commons attribution (cc by . ) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. see: http://creativecommons.org/licenses/by/ . / doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. http://www.campbellcollaboration.org/library/impact-of-care-farms-on-quality-of-life-different-population-groups.html http://www.campbellcollaboration.org/library/impact-of-care-farms-on-quality-of-life-different-population-groups.html http://creativecommons.org/licenses/by/ . / given the nature of the evidence base in this area, and the limited studies assessing health outcomes, in our logic models we split outcomes into ‘process outcomes’ and ‘health outcomes’. examples of process outcomes are those impacts that may well be precursors to health outcomes, for example self-esteem or confidence, and examples of health outcomes include anxiety, depression and quality of life. a narrative approach incorporating a wide range of study designs was planned based on early scoping of the literature that indicated a dearth of rcts evaluating the effectiveness of cfs. selection criteria inclusion criteria we included rcts, quasi-randomised study designs, cluster quasi-rcts, interrupted time series and non-randomised observational studies, including cohort studies, case–control studies and controlled before-and-after studies. we also included before-and-after studies that did not have a control group, and qualitative studies. with regard to service user groups, we aimed to include all population groups with participants of any age who would be likely to attend a cf, including those serving cos; those with drug and alcohol problems; those with mental health problems, including anxiety, depression and psychiatric disorders; those with health problems, particularly long-term conditions, including dementia; those with learning difficulties; those receiving palliative care; and young people with challenging behaviour, particularly those excluded/facing exclusion from school or those at risk of offending. in addition to the included study designs, we retained papers that described any theories offering explanations for how cfs may bring about change in the various population groups under investigation. exclusion criteria study designs that were excluded from the review were single-subject designs, reviews, overviews, surveys, commentaries and editorials. we also excluded theses in which empirical data had been subsequently published elsewhere. as we were interested in the most disadvantaged service user groups, we excluded studies with participants who were school children visiting for education purposes or adults as conservation volunteers. studies in which the activity was not part of a working farm (such as community and allotment garden studies or gardening within a hospital or prison) were not included. single activities such as gardening or horse riding were excluded. studies evaluating petting farms and one-off farms visits were also excluded. finally, interventions that were categorised as ‘therapy’ that were not part of a working farm (such as pet therapy and donkey/equine therapy) and those that combined care farming with another intervention (such as music therapy) were not included in the review. outcomes the primary outcomes were quality of life, anxiety and depression as measured using a validated instrument. secondary outcomes included mental health outcomes such as self-efficacy, self-esteem, stress, coping, mood, mental status, mental functioning, positive affect, rehabilitation and cognitive functioning, empowerment; social outcomes such as social functioning/interaction, group cohesion, recidivism, employment, school exclusion; physical outcomes including functional performance, physical activity and appetite and eating pattern; and behavioural outcomes such as drug use, alcohol intake and smoking. identification of studies we used electronic searching, grey literature searching and hand-searching to identify studies. in november , we searched the following databases: applied social sciences index and abstracts (assia) (via proquest) from ; cumulative index to nursing and allied health literature (cinahl) (via ebscohost) from ; the campbell library; criminal justice abstracts (via ebscohost) from ; conference proceedings citation index – science [thomson reuters’ (new york city, ny, usa) web of science] from ; conference proceedings citation index – social science & humanities (thomson reuters’ web of science) from ; embase classic and embase (via ovid) from ; education resources information center (eric) (via proquest) from ; francis (via ebscohost) from ; global health (via ovid) from ; greenfile (via ebscohost) from ; medline (via ovid) from ; the impact of care farms on quality of life among disadvantaged populations: a systematic review nihr journals library www.journalslibrary.nihr.ac.uk medline in-process & other non-indexed citations (via ovid) up to november ; the national criminal justice reference service abstracts database (via proquest) from ; psycinfo (via ovid) from ; sciences citation index (thomson reuters’ web of science) from ; scopus (elsevier b.v., amsterdam, the netherlands) from ; social care online (scie) from ; social sciences citation index (ssci) (thomson reuters’ web of science) from ; social services abstracts (via proquest) from ; sociological abstracts (via proquest) from ; and web of science, science citation index expanded (sci-expanded) and ssci from . for grey literature we performed the following searches: health management information consortium from (via ovid); proquest dissertations & theses from (via proquest); web of science, conference proceedings citation index – science (cpci-s) from (thomson reuters); web of science, conference proceedings citation index – social science & humanities (cpci-ssh) from (thomson reuters); and databases of ongoing trials, such as current controlled trials (www.controlled-trials.com; accessed november ). we also searched the websites of european network for rural development, uk ministry of justice (moj), care farming uk social farming in europe, farming for health, european cooperation in science and technology and green chimneys (usa and matmerk, norway). in addition, we examined the reference lists of included studies and any relevant systematic reviews identified and tracked citations of key papers using google scholar (google inc., mountain view, ca, usa) and web of science citation indexes. we used social and care farming and relevant academic networks across europe contact research experts or farmers to request any evaluations they have conducted. further relevant studies were identified through citation tracking activities. we hand-searched the njas – wageningen journal of life sciences ( – ) and the abstracts of cf and social farm conferences held in the uk and europe ( – ). a list of search terms is located in appendix . study selection, data extraction and management we performed a two-stage screening process with each stage involving multiple independent reviewers. stage involved screening titles and abstracts, and stage involved full-text reading. any disagreements were discussed and resolved by consensus at each stage of the eligibility assessment. multiple reports from the same study were coded separately before combining information across reports. we used the preferred reporting items for systematic reviews and meta-analyses (prisma) chart to detail the process of study selection. the prisma checklist is also provided in appendix . to aid the development of theory-informed logic models, during full-paper screening we retained papers that mentioned theories that had been applied or mentioned within care farming studies, regardless of whether or not the study met the inclusion criteria. we stored all the references identified by the search in endnote x [clarivate analytics (formerly thomson reuters), philadelphia, pa, usa]. we recorded in a microsoft excel® (microsoft corporation, redmond, wa, usa) spreadsheet all websites searched and the details of any reports found or further contacts made. eppi-reviewer (v. . . . ; evidence for policy and practice information and co-ordinating centre, university of london, london, uk) software was used during full-paper screening to record all eligibility decisions and store extracted data. information on study design, sample characteristics, intervention characteristics, including contextual information about the cfs, and outcomes were extracted from studies using an adapted version of the cochrane public health group data extraction and assessment template. we used a separate data extraction form for qualitative studies. when data extracting qualitative themes, we extracted negative as well as positive experiences and only included themes that represented the views of the cf service users. in studies involving service users with communication difficulties, we included themes based on the recorded perspectives of significant others (care farmers, carers and parents) on the impact of the cf on the service users. we excluded themes from others that were about their own experiences, for example the care farmers’ views on running a farm. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. for papers that reported theories related to care farming, we extracted any summaries explaining how cfs may work and the expected outcomes. if the identified paper failed to provide adequate description of this process, we sought to identify the seminal paper. quality assessments qualitative studies were assessed using an adapted version of the consolidated criteria for reporting qualitative research (coreq) tool. , three categories of reporting standard were established for each item: clearly met, unsure and not met. the effective practice and organisation of care (epoc) risk-of-bias tool was used to appraise rcts. the effective public health practice project (ephpp) tool was used to appraise other quantitative studies, such as controlled before-and-after studies or uncontrolled before-and-after (uba) studies. studies with the majority of domains categorised as ‘unclear’ in the epoc risk-of-bias tool were rated as being at a high risk of bias; similarly, studies with two domains categorised as ‘weak’ in the ephpp tool were rated as being at a high risk of bias. each paper was assessed by two independent reviewers and any disagreements were discussed and resolved by consensus. we did not exclude any studies based on these quality assessments. measures of treatment effect we did not find studies with sufficient homogeneity to pool their effect sizes and, therefore, we were unable to conduct our planned meta-analyses. consequently, odds ratios or mean differences were not calculated. assessment of reporting biases we planned to use funnel plots to assess for reporting bias. a minimum of studies with a common outcome measure is needed to be able to distinguish chance from real asymmetry (i.e. true publication bias) within the funnel plots. as we had fewer than studies, we were unable to assess reporting bias. data synthesis we based our data synthesis on a sequential exploratory approach. this involved four key stages. stage the aim of this stage was to develop a preliminary theoretical framework to explain potential mechanisms of change. for this we examined papers that reported theories relating to care farming. we retrieved the seminal articles of theories that lacked adequate description in the paper obtained through the search. two reviewers (jm and nw) extracted information on the issue being addressed and the mechanism of change that the theory proposed to explain subsequent effectiveness. each summary was compared with identified areas of overlap to create a condensed set of concepts on which to map the evidence. one reviewer (jm) conducted the extraction and analysis and this was subsequently checked by a second reviewer (nw). stage this stage aimed to identify the intervention components, mechanisms of change and process outcomes from the qualitative literature. extracted themes that were composite, that is, represented multiple discrete findings, were independently deconstructed by three reviewers (nw and jm or he), checked and then sorted as an intervention component, mechanism or process outcome. intervention components included the facilities, activities and structure provided as part of the farm. mechanisms represented subjective experiences, such as feeling and perceptions, that suggested a process by which part of the intervention may result in a particular outcome. therefore, for example, having physical contact with the animals (the intervention) would provide a sense of warmth and calm (mechanism). process outcomes were those derived from a particular mechanism within the intervention. health outcomes, as previously defined in this review, were not categorised as a process outcome. the impact of care farms on quality of life among disadvantaged populations: a systematic review nihr journals library www.journalslibrary.nihr.ac.uk on agreement between the reviewers, each finding was transcribed onto a sticky note in preparation for a clustering exercise. this exercise involved six additional reviewers (rb, me, cb, jc, st and ds) checking the groupings of intervention components, mechanisms and process outcomes on the post-it® ( m, maplewood, mn, usa) notes. then the mechanisms were independently, and without consultation, placed on a blank wall and moved around the wall without consultation according to emerging categories of similar mechanisms. once completed, the reviewers labelled each category according to composition and meaning. subsequent detailed additional analysis was performed by three reviewers (jm, nw and he) to ensure that each of the findings had not been overinterpreted (i.e. assumptions about what the mechanism may lead to), was appropriately allocated and remained true to its original context. for the intervention components, one reviewer (jm) grouped the findings according to congruency and labelled each of the categories. this was subsequently checked by one further reviewer (nw). as a gauge of the potential relative importance of each of the categories of mechanisms, we assessed the spread of the categories (across all the studies) and the frequency of the findings within each category. we carried this out for all the studies (all population groups) and for each individual population group (whenever possible). we ordered the categories based on this assessment to explore the possibility that cfs may work in different ways for different populations. stage this involved mapping of the qualitative mechanisms and process outcomes to the theoretical concepts to create a logic model. this was performed by one reviewer (jm) and checked by a further two reviewers (nw and he). the aim was to understand the ways in which change occurred and to start testing the theories using empirical data. stage the outcomes from the quantitative studies were synthesised narratively, in accordance with the economic and social research council’s guidance, and were then mapped to the logic models. findings we found articles through searching of electronic databases and via grey literature retrieval methods (figure ). we obtained full copies of articles and, of these, papers (representing studies) met the inclusion criteria. we retained studies that provided theoretical (to support the development of the logic model) and contextual information (to shed light on activities relating to specific service user groups) about the care farming intervention, despite the study’s exclusion from the main review. fourteen qualitative studies reported in papers (table ), quantitative studies reported in papers (table ) and one mixed-methods study met the inclusion criteria. from publications, we identified theoretical or philosophical concepts quoted in connection to care farming. from these, we retained that offered a potential explanation for how cfs may work to bring about change in various service user groups. characteristics of included studies across the qualitative studies, five studies , , , , focused solely on people with mental health problems, including people with depression and psychotic and personality disorders. a further three studies included two service user groups for people with mental health problems as well as drug and alcohol misuse. , – , other studies that involved single service user groups included two for people with learning disabilities, , two for disaffected youth , and one for people with autism. there were service user participants, with study sizes ranging from to . ten studies , , – , – , , did not provide information on the age of the study participants and gender was not reported in four studies. , – there were almost twice as many male service users participating in the studies as female service users (ratio of . : ). doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. among the quantitative studies were two rcts – and two controlled before-and-after studies, , , with the remaining nine using an uba design. , – ten studies evaluated the effects of care farming on a targeted single service user group: six on service users with mental ill health; – , – , one on older people with dementia; , two on disadvantaged youth; , and one on probation service users. three studies , , , used a mixed service user group, with two including four different groups. , , gender was reported in studies, , , – , , which revealed twice as many male than female participants (male, n = ; female, n = ). the mean age of participants in the studies ranged from to years. the intensity and duration of intervention varied, but most commonly involved half-day ( . – hours) or full-day ( – hours) sessions two or three times per week over a -week period. most commonly, follow-ups were performed immediately after the intervention with two studies also reporting at months, , – four studies at months , , – , , and four studies at months. , , , , one study reported follow-up at years. across the studies, different defined outcome measures were applied, only six of which were primary outcomes. studies provided limited information about the types of activities available on the farms. the studies fell into four main types: horticultural/land maintenance work, , , , conventional farm animal care, , , , , , , , , , , additional animal-based activities and other activities. the last type included working in the shop, outdoor recreational activities (camping, campfires, outdoor trips and den building) and indoor activities (baking, meal preparation, crafts, games, general household work and tractor driving). some studies did not provide enough details about the interventions to be classified. quality assessments six of the qualitative studies , – , , ( %) met more than % of the quality assessment criteria (table ). only one study met more than % of the criteria. one study met less than % of the criteria. openness about the researcher’s bias and assumptions and evidence of a pre-existing or newly established relationships were each addressed by only one study. two criteria fundamental to all research practice are evidence of ethics approval and evidence of informed consent. these were not reported in nine ( %) studies. , , – , , , all studies that met more than % of the quality criteria used a theoretical framework. records identified through database searching (n = ) additional records identified through other sources (n = ) after de-duplication. titles and abstracts screened (n = ) records excluded (n = ) full-text articles assessed for eligibility (n = ) papers included in quantitative synthesis (n = ) papers included in qualitative synthesis (n = ) papers included in both syntheses (n = ) full-text articles excluded (n = ) papers providing theoretical/contextual information (n = ) figure preferred reporting items for systematic reviews and meta-analyses (prisma) flow diagram. the impact of care farms on quality of life among disadvantaged populations: a systematic review nihr journals library www.journalslibrary.nihr.ac.uk table characteristics of qualitative studies references country client group method numbers of interviewees age (years), mean (range) gender (n) quality criteria met (%) baars et al. the netherlands mental ill health interviews and photography male: female: < bjørgen and johansen norway mental ill health focus groups – – < elings the netherlands learning disabilities interviews, participatory observation – – < elings and beerens; and, elings and hassink , the netherlands mental ill health: psychiatric; substance misuse focus groups – – < elings et al. the netherlands mental ill health; substance misuse interviews and focus groups – – < ferwerda-van zonneveld et al. the netherlands children with autism spectrum disorder interviews – male: female: < granerud and eriksson norway mental ill health: long-standing severe psychotic disorders, personality disorders; substance misuse interviews ( – ) male: female: > hassink; and hassink et al. the netherlands mental ill health; disaffected/ excluded youth; older people interviews – male: female: > iancu et al. the netherlands mental ill health interviews – male: female: > kaley uk learning difficulties interviews and video recording and photographic method – male: female: > kogstad et al. norway disaffected/excluded youth interviews . ( – ) male: female: > continued d o i: . /p h r p u b l ic h e a l t h r e s e a r c h v o l . n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o . t h is w o rk w a s p ro d u ce d b y e lse y e t a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riva te re se a rch a n d stu d y a n d e xtra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro vid e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d ve rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls lib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e va lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n ive rsity o f s o u th a m p to n s cie n ce p a rk , s o u th a m p to n s o n s , u k . table characteristics of qualitative studies (continued) references country client group method numbers of interviewees age (years), mean (range) gender (n) quality criteria met (%) leck et al. uk mental ill health; substance misuse; disaffected/excluded youth; learning difficulties interviews and focus groups – male: female: < pedersen et al. norway mental ill health: people with depression interviews . ( – ) male: female: > schreuder et al. the netherlands disaffected/excluded youth interviews ( – ) male: female: > north essex research network and south essex service user research group uk mental ill health interviews – male: female: < t h e im p a c t o f c a r e f a r m s o n q u a l it y o f l if e a m o n g d is a d v a n t a g e d p o p u l a t io n s : a s y s t e m a t ic r e v ie w n ih r jo u rn a ls lib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k table characteristics of quantitative studies study design references country client group control group sample size age (years), mean ± sd (range) gender (n) duration process outcomes (measures) outcomes (measures) follow-ups rct berget et al. – norway mental ill health: patients with psychiatric disorders treatment as usual . ± . ( – ) male: ( . %) female: ( . %) hours, twice a week, for weeks coping (coping strategies scale); self-efficacy (generalized self-efficacy scale); and work abilities a,b quality of life (the norwegian version of the quality of life scale); depression (the beck depression inventory); and anxiety (the spielberger state anxiety inventory) weeks and months rct pedersen et al. norway mental ill health: people with clinical depression waiting list control group intervention: . ± . control: . ± . intervention: male, female control: male, female . – hours, twice a week, for weeks self-efficacy (generalized self-efficacy scale) depression (the beck depression inventory); and anxiety (state–trait anxiety inventory- state subscale) weeks and months after the intervention cba de bruin; and de bruin et al. the netherlands older people > years with dementia regular day care facilities intervention: . ± control: . ± . intervention: ( %) male, ( %) female control: ( %) male, ( %) female hours, – days a week cognitive functioning (mini mental state examination); functional performance (the barthel index); medication usage; total number of diseases; a emotional well-being; a number of clinically relevant behavioural symptoms; a and number of medications used a – months and months cba elings et al. the netherlands mental ill health; substance misuse day activity projects intervention: ( – ) control: ( – ) intervention: % male, % female control: % male, % female hours, approximately days a week social functioning (social functioning scale); mental functioning ( -item mental health inventory); and appetite and eating pattern (simplified nutritional appetite questionnaire) quality of life (whoqol-bref) months and months continued d o i: . /p h r p u b l ic h e a l t h r e s e a r c h v o l . n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o . t h is w o rk w a s p ro d u ce d b y e lse y e t a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riva te re se a rch a n d stu d y a n d e xtra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro vid e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d ve rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls lib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e va lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n ive rsity o f s o u th a m p to n s cie n ce p a rk , s o u th a m p to n s o n s , u k . table characteristics of quantitative studies (continued) study design references country client group control group sample size age (years), mean ± sd (range) gender (n) duration process outcomes (measures) outcomes (measures) follow-ups uba hassink et al. the netherlands disaffected/excluded youth n/a male: . , ± . female: . ± . male: female: hours, for half a year at the farm problem behaviour (youth self-report); coping (utrecht coping list); and self-determination (ipc loc scale) – months and months uba gonzalez; and gonzalez et al. – norway mental ill health: people with clinical depression n/a . ( – ) male: female: hours, twice a week, for weeks positive affect (positive and negative affect scale); stress (perceived stress scale); and group cohesion (therapeutic factors inventory – cohesiveness scale) depression (beck depression inventory); and anxiety (state–trait anxiety inventory–state subscale) weeks and months after the intervention uba pedersen et al. norway mental ill health: people with clinical depression n/a . ( – ) male: female: . – hours, twice a week, for weeks – depression (beck depression inventory); and anxiety (state–trait anxiety inventory- state subscale) weeks uba javed et al. pakistan mental ill health: diagnosis of schizophrenia n/a . ( – ) male: female: – mental status (brief psychiatric rating scale); and rehabilitation (morningside rehabilitation status scale) – year, years and years uba hine et al. , uk mental ill health; substance misuse; older people; and offenders n/a ( – ) male: ( %) female: ( %) . hours (range: – hours) self-esteem (rosenberg self–esteem scale); and mood (profile of mood states questionnaire) depression (from the profile of mood states questionnaire) immediately after the intervention uba hine et al. uk mental ill health: asylum seekers and refugees, who are suffering from post-traumatic stress disorder and depression n/a – – – weeks – quality of life (core-om) end of intervention ( – weeks) t h e im p a c t o f c a r e f a r m s o n q u a l it y o f l if e a m o n g d is a d v a n t a g e d p o p u l a t io n s : a s y s t e m a t ic r e v ie w n ih r jo u rn a ls lib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k study design references country client group control group sample size age (years), mean ± sd (range) gender (n) duration process outcomes (measures) outcomes (measures) follow-ups uba lambert uk learning difficulties; mental ill health: anxiety and/or depression; psychosis; personality and/or social issues; and people with brain injury n/a . ± . male: ( %) female: ( %) . days general health and attitude a ; and occupational functioning a quality of life (euroqol- dimensions) end of intervention and morning/ afternoon uba marshall and wakeham uk offenders n/a – – hours and minutes, over sessions reoffending – months uba suprise usa youth in foster care n/a ( – ) male: female: up to two times per week with many coming for years prosocial behaviour and social competence a defined – weeks cba, controlled before-and-after study; core-om, clinical outcome in routine evaluation–outcome measure; ipc loc, internal, powerful others, and chance orientations locus of control; n/a, not applicable; whoqol-bref, world health organization’s quality of life instruments-bref. a these outcomes were not included in analysis as the measure was not defined or the outcome had been modified without adequate description or validation. b work ability is a composite score comprising intensity and exactness based on observational measurement. d o i: . /p h r p u b l ic h e a l t h r e s e a r c h v o l . n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o . t h is w o rk w a s p ro d u ce d b y e lse y e t a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riva te re se a rch a n d stu d y a n d e xtra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro vid e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d ve rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls lib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e va lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n ive rsity o f s o u th a m p to n s cie n ce p a rk , s o u th a m p to n s o n s , u k . all quantitative studies had many limitations and were rated as being at a high risk of bias (tables and ). for the two rcts, – allocation concealment was clearly described in one study. baseline assessments reported in both studies revealed differences between the intervention and the control groups in one study, which were not adjusted for in analysis. differences in baseline characteristics were also reported in one study – but unclear in the other. the logic models the mrc’s guidance on the evaluation of complex interventions provides the basis for the design of our logic models and the definitions of the terms used within them. for clarity, the mrc’s definition of a logic model is given as: a diagrammatic representation of an intervention, describing anticipated delivery mechanisms (e.g. how resources will be applied to ensure implementation), intervention components (what is to be implemented), mechanisms of impact (the mechanisms through which an intervention will work) and intended outcomes. reproduced from moore et al. (p. ). this is an open access article distributed in accordance with the terms of the creative commons attribution (cc by . ) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. see: http://creativecommons.org/licenses/by/ . / theoretical concepts exploration of the identified theories revealed five theoretical concepts: restorative effects of nature, being socially connected, personal growth, physical well-being and mental well-being. the primary outcomes explicitly suggested by theories were related to depression and anxiety, and quality of life. the process outcomes suggested by theories were related to confidence, stress, coping and self-efficacy, and pro-social behaviours. table quality assessment of qualitative studies section of tool items most often addressed (number of studies plus number of studies partially addressing item) items least often addressed (number of studies, plus number partially addressing item) background, research team and reflexivity (eight items) is it clear what is being studied? ( studies) , , , – is it clear which author(s) conducted the interviews or focus groups? (seven studies, plus one study) , , – , , , , is the gender of the researcher clear? (seven studies, plus one study) , , , , – were the characteristics of the interviewer reported? (one study) evidence of relationship established between researcher/interviewer and participant before the study commenced? (one study, plus one study) , did the researcher/interviewer indicate if there was a pre-existing relationship with the participant and, if so, was this described? (one study) study design ( items) does the study state how many took part in the interviews/focus group/observations? ( studies, plus one study) , , , – , – does the author say how many interviews/ focus group/observations were carried out? ( studies) , , – were audio or visual methods used to record/collect the data? ( studies) , , , , – , – does the researcher state if anyone else was present during the interviews? (three studies, plus one study) , , , was data saturation discussed? (three studies) – data analysis and findings ( items) do the quotations reflect the findings? ( studies) , – , , – were major themes clearly presented in the findings? ( studies) , , , – does the study report the number of coders involved? (three studies) , , did the authors report checking back with informants over interpretation? (two studies) , , the impact of care farms on quality of life among disadvantaged populations: a systematic review nihr journals library www.journalslibrary.nihr.ac.uk http://creativecommons.org/licenses/by/ . / t a b l e a ss e ss m e n t o f ri sk o f b ia s in r c t s s tu d y w a s th e a ll o ca ti o n se q u e n ce a d e q u a te ly g e n e ra te d ? w a s a ll o ca ti o n a d e q u a te ly co n ce a le d ? w e re b a se li n e o u tc o m e m e a su re m e n ts si m il a r? w e re b a se li n e ch a ra ct e ri st ic s si m il a r? w e re in co m p le te o u tc o m e d a ta a d e q u a te ly a d d re ss e d ? w a s k n o w le d g e o f th e a ll o ca te d in te rv e n ti o n a d e q u a te ly p re v e n te d d u ri n g th e st u d y ? w a s th e st u d y a d e q u a te ly p ro te ct e d a g a in st co n ta m in a ti o n ? a re re p o rt s o f th e st u d y fr e e o f su g g e st io n o f se le ct iv e o u tc o m e re p o rt in g ? g lo b a l ra ti n g fo r th is p a p e r p e d e rs e n e t a l. ✓ ✓ ✗ ✗ ✓ ✗ ✓ ✓ ✗ b e rg e t e t a l. – ✓ = ✓ = ✗ ✗ = ✓ ✗ ✗ , h ig h ri sk o f b ia s; ✓ , lo w ri sk o f b ia s; = , u n cl e a r ri sk o f b ia s. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. intervention components, mechanisms and process outcomes through the process of deconstruction of reported themes, we identified intervention components, mechanisms and process outcomes. intervention components were organised into five categories: being in a group, the farmer, the work, the animals and the setting (table ). overall, care farming intervention components relating to the farmer and the work appeared to be prominent features in the findings. despite the fact that data were infrequently reported for single service user groups, we did observe some differences in the types of intervention components mentioned that may indicate differences in either the types of activities made available to disparate service user groups or the level of importance of those activities to types of service users. table assessment of risk of bias in controlled before-and-after studies and uba studies study selection bias study design confounders blinding data collection method withdrawals and dropouts global rating for this paper de bruin; and de bruin et al. ✗ = ✗ = = = ✗ elings et al. = = ✗ ✗ ✓ = ✗ hassink et al. ✓ = ✓ ✗ = ✗ ✗ gonzalez, gonzalez et al. – ✗ = ✗ ✗ ✓ ✓ ✗ pedersen et al. = = ✗ ✗ ✓ = ✗ javed et al. ✗ = = ✗ ✗ = ✗ hine et al. , = = = ✗ = ✗ ✗ hine et al. ✗ = ✗ ✗ ✓ ✗ ✗ lambert ✗ = = = = ✗ ✗ marshall and wakeham ✗ = ✗ ✗ ✓ ✗ ✗ suprise ✗ = = ✗ ✗ ✗ ✗ ✗, high risk of bias; ✓, low risk of bias; =, unclear risk of bias. table intervention categories according to service user group intervention category number of findings in each category (%) all client groups mental ill health and substance misusea disaffected youthb learning difficultiesc being in a group ( ) ( ) ( ) ( ) the farmer ( ) ( ) ( ) ( ) the work ( ) ( ) ( ) ( ) the animals ( ) ( ) ( ) the setting ( ) ( ) ( ) ( ) all a twenty-two out of findings also included disaffected youth and service users with learning disabilities and older people. b only out of findings were solely disaffected youth and out of findings included service users from other groups. c seven out of findings included service users from other groups. the impact of care farms on quality of life among disadvantaged populations: a systematic review nihr journals library www.journalslibrary.nihr.ac.uk we used the mrc’s definition of mechanisms to guide our identification of mechanisms within cf studies: the intermediate mechanisms through which intervention activities produce intended (or unintended) effects. the study of mechanisms may include: participant responses – how participants interact with a complex intervention; mediators – intermediate processes which explain subsequent changes in outcomes; unintended pathways and consequences. reproduced from moore et al. (p. ). this is an open access article distributed in accordance with the terms of the creative commons attribution (cc by . ) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. see: http://creativecommons.org/licenses/by/ . / through the iterative clustering exercise, mechanism-based findings were organised into categories of mechanisms (table ). although we identified the frequency that the mechanisms occurred, we do not suggest that any one mechanism is more important than another at an individual level. in terms of frequency and spread of findings, the categories ‘understanding the self’, ‘social relationships’ and ‘belonging and non-judgement’ represented the most common categories across all studies. ‘creating a new identity’ and the farm as a ‘distraction’ were least often observed across the studies. table categories of mechanism with descriptions mechanisms description frequency of findings in each category (all groups) achievement and satisfaction working at the farm gives service users a sense of satisfaction. at the farm, participants learn to perform activities; hence, they spent their days being constructive. there is satisfaction with using their bodies and spending time outdoors belonging and non-judgement the cf is seen by service users as a place of belonging and mutual acceptance. feelings of solidarity are created through shared experiences. service users enjoy working with the animals, which are perceived to be non-judgemental creating a new identity service users view themselves in a new light as a worker, principally as a farmer distraction the farm creates physical work, which offers both a practical and mental distraction from the service users’ own negative thoughts. conversations centre on work, which offers further distraction feeling valued and respected service users feel valued, appreciated and needed by the farmer (and the animals) and consider that they are respected ‘for who they are’ feeling safe the atmosphere at the farm creates a feeling of safety and security, providing a mental shield between illnesses and addictions. for some service users this experience is enhanced through physical contact with the animals, but for others there is a need to overcome fear of animals, which can then lead on to a feeling of safety learning skills cfs give service users the opportunity to learn new skills ranging from growing crops to looking after animals, which enables some to gain qualifications, enabling then to (re)enter the work place meaningfulness service users perceive tasks as meaningful because they are judged to be useful to others and are ‘needed to conduct day-to-day activities at the farm’. service users also see their role as personally meaningful, contributing to society giving them a sense of purpose, happiness and fulfilment nurturing through helping each other and caring for the animals/plants, service users become considerate of other people’s needs and recognise that they are doing good for other living creatures continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. http://creativecommons.org/licenses/by/ . / in terms of service user groups, findings from the substance misuse and mental ill health service users were reported together and could not be separated. this service user group, as a combined group, was the largest, with findings from studies. no findings relating to ‘reflection’ or ‘creating a new identity’ were found in this combined service user group. for disaffected youth, ‘feeling safe’ was more frequently reported than ‘belonging and non-judgement’. ‘achievement and satisfaction’ was frequently mentioned in both the combined mental health and substance misuse group and the learning disabilities group, but was reported less often in the disaffected youth group. ‘reflection’ was also reported more often in the disaffected youth group than in the others. in the learning disability service user group, ‘understanding the self’ was reported less frequently than ‘social relationships’, ‘belonging and non-judgement’, ‘social relationships’ and ‘meaningfulness’. of the process outcomes reported in the qualitative studies (table ), related to emotions, such as increased confidence and self-esteem. improved coping and feelings of well-being were also mentioned in numerous studies, as was independence. table categories of mechanism with descriptions (continued) mechanisms description frequency of findings in each category (all groups) physical well-being through physical activity on the farm, service users improve their physical strength. there is a sense of ‘good’ tiredness from physical work. service users start to feel more independent and healthier reflection the cf environment is quiet and peaceful, allowing service users to stop and reflect on their problems, their social influences and also the progress they have made. for young people, working at the farm gives space and time away from their family and friends social relationships cfs provide opportunities for participants to interact with the farmer and other service users. for instance, often service users were working together in groups which helped them to develop their communication skills. as the intervention progressed, the service users deepened their relationships with the farmer and considered him or her as a role model. once service users gained social confidence, their social networks grew. in particular, they found that talking about their farm work was more interesting than talking about their illness in social functions. however, a few service users did not want to interact with others and found it difficult to deal with the diverse range of service users at the farm stimulation service users find tasks stimulating, giving them more energy and encouraging a mindful approach to work, especially around animals, which are unpredictable. working with animals offers a sensory experience and the energy derived from the work enables them to work through their own problems better. the experience of being in nature is energising structure the daily farming activities provided a predictable work environment to the service users. this consistency helped the service users to gain a normal rhythm. moreover, the farmers also allowed service users to work at their own pace as they understood that the service users can have a ‘bad day’ and may not be able to work at full capacity. similarly, farmers involved participants in deciding tasks for the day understanding the self the cf environment has allowed service users to better understand themselves. participant’s self-awareness grew while at the cf. for example, learning to master an activity at the farm increased their self-respect and positive self-image. at the farm, participants were free to be themselves, and they also had the opportunity to learn and when they made mistakes they were given time and guidance to learn from their mistakes. this gave them the understanding that tasks at the farm are manageable, which enhanced their self-efficacy and self-confidence. some found that caring for and cuddling animals helped them to deal with problems the impact of care farms on quality of life among disadvantaged populations: a systematic review nihr journals library www.journalslibrary.nihr.ac.uk table qualitative studies with categories of mechanisms and process outcomes references number of mechanism findings categories of mechanisms target groups outcomes reported by participants theoretical basis baars et al. achievement and satisfaction; belonging/non- judgement; distraction; feeling valued/respected; learning skills; a nurturing; physical well-being; social relationships; structure; and understanding the self a mental ill health less medication none stated bjørgen and johansen distraction; a feeling safe; and social relationships a mental ill health increased confidence, physical health and vocational rehabilitation none stated elings achievement and satisfaction; belonging/non- judgement; creating a new identity; feeling safe; feeling valued/respected; a learning skills; meaningfulness; stimulation; structure; and understanding the self mental ill health: service users with intellectual disabilities improved self-esteem none stated elings and beerens; and elings and hassink , achievement and satisfaction; belonging/ non-judgement; distraction; learning skills; meaningfulness; physical well-being; stimulation; and understanding the self a mental ill health: psychiatric; substance misuse increased confidence anthroposophy b elings et al. feeling safe; meaningfulness; and structure mental ill health; substance misuse – none stated ferwerda-van zonneveld et al. feeling safe; reflection; stimulation; structure; and understanding the self children with autism spectrum disorder – none stated c granerud and eriksson achievement and satisfaction; belonging/non- judgement; a feeling safe; feeling valued/respected; meaningfulness; physical well-being; structure; and understanding the self mental ill health: long-standing severe psychotic disorders, personality disorders; and substance misuse improved well-being, self-perception; social life and confidence recovery model c hassink; and hassink et al. belonging/non-judgement; a feeling safe; feeling valued/ respected; learning skills; social relationships; structure; and understanding the self mental ill health; disaffected/ excluded youth; and older people – recovery model c iancu et al. belonging/non-judgement; learning skills; a meaningfulness; physical health; social relationships; and understanding the self mental ill health increased confidence, mood and less tiredness recovery model continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table qualitative studies with categories of mechanisms and process outcomes (continued) references number of mechanism findings categories of mechanisms target groups outcomes reported by participants theoretical basis c kaley achievement and satisfaction; belonging/ non-judgement; a creating a new identity; feeling valued/ respected; meaningfulness; nurturing; social relationships; stimulation; and understanding the self learning difficulties increased independence, well-being and reduced anxiety and healthy lifestyle therapeutic landscape concept c kogstad et al. feeling safe; meaningfulness; physical well-being; reflection; social relationships; and understanding the self disaffected/ excluded youth – recovery theory leck et al. achievement and satisfaction; belonging/ non-judgement; feeling safe; learning skills; meaningfulness; nurturing; physical well-being; social relationships; a and structure mental ill health; substance misuse; disaffected/ excluded youth; and learning difficulties increased happiness and improved pro-social behaviours art, biophilia, pet c pedersen et al. achievement and satisfaction; a belonging/ non-judgement; distraction; feeling safe; feeling valued/ respected; learning skills; meaningfulness; nurturing; physical well-being; stimulation; understanding the self mental ill health: people with depression increased confidence and independence biophilia; self-efficacy theory; c schreuder et al. feeling valued/respected; a reflection; understanding the self a disaffected/ excluded youth – salutogenic theory north essex research network, south essex service user research group achievement and satisfaction; social relationships; stimulation; understanding the self mental ill health increased independence none stated art, attention restoration theory; pet, psycho-evolutionary stress reduction theory. a category with most findings. b philosophical concept rather than theory. c studies scoring higher on quality assessment. the impact of care farms on quality of life among disadvantaged populations: a systematic review nihr journals library www.journalslibrary.nihr.ac.uk mapping mechanisms from qualitative studies to the theoretical concepts across the three main service user groups (combined mental health and substance misuse, disaffected youth and learning difficulties), there were some differences in how mechanisms mapped to theoretical concepts. in the combined mental ill health and substance misuse group, the number of mechanism findings that mapped to ‘mental well-being’ was almost double that of any other theoretical concept. in the other service user groups, ‘being socially connected’ and ‘mental well-being’ were similarly represented by the mechanisms. only four single findings within the mechanism categories of ‘reflection’, ‘stimulation’ and ‘feeling safe’ appeared to map on to the theoretical concept of ‘restorative effects of nature’, but these mapped more appropriately to ‘mental well-being’. the categories of mechanisms were then combined with the intervention components and process outcomes to create a logic model for the following service user groups: all service user groups; combined mental ill health and substance misuse group; disaffected youth group; and learning disabilities group (figures – ). there were insufficient data to develop models for older people and for people with autism spectrum disorder. testing the logic models of the expected process and primary outcomes, no quantitative studies were found that evaluated the impact of cfs on confidence, tiredness and physical health. pro-social behaviours were measured, but only one form (reduction in reoffending) was clearly defined. in addition, vocational skills may have been measured in the form of occupational functioning and work abilities. however, as these outcomes either were not defined or incorporated highly subjective measurements, we cannot be clear. despite being able to develop the logic models, an absence of quantitative studies meant that the learning disabilities model could not be tested. the disaffected youth model underwent limited testing of the secondary/process outcome with an absence of any primary outcome data. based on limited quantitative evidence from only two rcts, we did not find any significant positive effects of cfs in improving quality of life in the mental ill health or substance misuse groups. we did find some very limited and inconclusive evidence to suggest that care farming can reduce anxiety. for depression, although there appeared to be significant reductions following the intervention, as assessed in uba studies, when compared with a control group in rcts no significant difference was found. for process/secondary outcomes, there were no significant positive effects for either self-efficacy or coping (measured in the rcts) at the end of the intervention, but there was significant improvement for self-efficacy, but not coping, at follow-up. the possibility that there may be some delayed benefits (as with anxiety) for self-efficacy was not investigated by other studies and, therefore, remains unconfirmed. a number of uba studies reported significant improvements in self-esteem, stress, affect, mood and group cohesion at the end of the intervention. however, only stress and affect were measured at follow-up ( months after the intervention ended) and improvements were not sustained. most of the primary and secondary outcomes were limited to immediately after the intervention with only three (social functioning, eating and appetite and mental status) reported beyond months. with respect to disaffected youth, there was some suggestion that coping may be improved but that there was no impact on self-esteem. summary there is a general trend of evidence to suggest that care farming may be effective for some service user groups; however, this evidence is limited. small study sizes, evaluations involving mixed service user groups, the use of multiple and sometimes unvalidated outcome measures, short follow-up periods and absence of missing key outcomes that fit with theory have all hampered the development of a more robust evidence base. however, we now have a set of theory-based logic models that offer a framework for research evaluations, and with recommendations in place to address the current research inadequacies there is an opportunity to vastly improve the evidence base for care farming. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. intervention components being in a group: working as a colleague alongside others in small informal and stable groups with a different discourse. having lunch together and with opportunity of developing long-term relationships mechanisms (linked to theoretical concepts) mental well-being: achievement and satisfaction; meaningfulness; feeling valued and respected; nurturing; distraction; feeling safe; structure to life; stimulation; understanding the self;a reflection personal growth: learning new skills; creating a new identity being socially connected: social relationships;a belonging/ non-judgement;a nurturing physical well-being process outcomes confidence (t) self-efficacy (t) – +/– – self esteem + mood status +/+ vocational skills medication stress (t) + – negative behaviours (t) + happiness/well-being personal identity (t) physical health/tiredness coping skills (t) – –/+ independence/social activity outcomes reduction in depression – – + + + – – + – – – – – + – – + – improved quality of life reduction in anxiety work: real and useful and hard work, physically tiring, paced and varied, suitable for all skill levels, enabling skills acquisition the setting: providing physical space to be alone and offering a quieter, less fussy environment with opportunity to appreciate the view and be outside. escape from negative environments animals: tasks involving animals enables people to overcome fears, learn to care and have a closeness to without judgement the farmer: offers choice in work tasks with adapted instructions. accepting and approachable, individually attentive, creating safety and normality. practical and emotional support given. entrepreneurial figure logic model for all service user groups. a, mechanisms that were most frequently found and with greatest spread across studies. grey and black symbols show quantitative evidence for which – means no significant difference and + means significant difference; grey represents rct evidence; two symbols beside each other show different time points within the same study; and shaded process outcomes equate to evidence from qualitative literature. t, theory based. t h e im p a c t o f c a r e f a r m s o n q u a l it y o f l if e a m o n g d is a d v a n t a g e d p o p u l a t io n s : a s y s t e m a t ic r e v ie w n ih r jo u rn a ls lib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k intervention components mechanisms (linked to theoretical concepts) mental well-being: understanding the self;a achievement and satisfaction; meaningfulness; feeling valued and respected; nurturing; distraction; feeling safe; structure to life; stimulation personal growth: learning new skills being socially connected: social relationships;a belonging/ non-judgement;a nurturing physical well-being expected process outcomes confidence (t) coping skills (t) – – independence/social activity self-efficacy (t) – +/– – mood status +/+ personal identity medication stress (t) + – self-esteem negative behaviours (t) happiness/well-being vocational skills tiredness/physical heath expected outcomes reduction in depression – – + + – – – – – – – + – – + – improved quality of life reduction in anxiety work:a practical useful work that is doable, appropriate, modifiable, varied and requires physical effort enabling skills acquisition animals: tasks involving animals enables people to overcome fears, learn to care and have a closeness to without judgement the farmer:a offers choice in work tasks with adapted instructions respecting client limitations. practical and emotional support given and farmer open to questions being in a group: working as a colleague alongside others in small informal and stable groups the setting: providing physical space to be alone and offering a quieter, less fussy environment with opportunity to appreciate the view and be outside. escape from negative environments figure logic model for combined mental ill health and substance misuse group. a, mechanisms that were most frequently found and with greatest spread across studies. grey and black symbols show quantitative evidence for which – means no significant difference and + means significant difference; grey represents rct evidence; two symbols beside each other show different time points within the same study; and shaded process outcomes equate to evidence from qualitative literature. t, theory based. d o i: . /p h r p u b l ic h e a l t h r e s e a r c h v o l . n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o . t h is w o rk w a s p ro d u ce d b y e lse y e t a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riva te re se a rch a n d stu d y a n d e xtra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro vid e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d ve rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls lib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e va lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n ive rsity o f s o u th a m p to n s cie n ce p a rk , s o u th a m p to n s o n s , u k . intervention components mechanisms (linked to theoretical concepts) process outcomes happiness/well-being negative behaviours (t) + confidence (t) coping skills (t) + self-esteem + stress (t) self-efficacy (t) outcomes improved quality of life reduction in depression reduction in anxiety mental well-being: meaningfulness, feeling safe,a feeling valued/ respected, achievements and satisfaction, structure to life personal growth: learning new skills, understanding the self,a reflection, nurturing being socially connected: developing social relationships;a belonging and non-judgement physical well-being work: experiencing hard and varied work suitable for all levels animals: taking care of and being in contact with the animals the farmer: treats clients as normal, without prejudice, with respect and concern. emotional support and creates safe environment being in a group: being in informal and stable groups including clients with other difficulties and offering a different type of language and social engagement the setting: providing physical space to be alone and offering a quieter, less aggressive and negative environments with opportunity to appreciate the view and be outside figure logic model for disaffected youth group. a, mechanisms that were most frequently found and with greatest spread across studies. black symbols show quantitative evidence for which – is no significant difference and + is significant difference; and shaded process outcomes equate to evidence from qualitative literature. t, theory based. t h e im p a c t o f c a r e f a r m s o n q u a l it y o f l if e a m o n g d is a d v a n t a g e d p o p u l a t io n s : a s y s t e m a t ic r e v ie w n ih r jo u rn a ls lib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k intervention components mechanisms (linked to theoretical concepts) process outcomes outcomes independence/social activity happiness/well-being physical health confidence (t) coping skills (t) self-efficacy (t) stress (t) reduction in depression improved quality of life reduction in anxiety mental functioning: achievement and satisfaction;a feeling safe; feeling valued and respected; meaningfulness; stimulation personal growth: new identity; learning skills; nurturing being socially connected: belonging and non-judgementa, social relationshipsa physical well-being work: diverse range, real work, able to work at own pace and without time pressure (but sometimes includes pressure) the farmer: creates safe environment. provides choice, practical experience and emotional support. gives individual attention and is entrepreneurial being in a group: doing things together, having lunch with the farmer, speaking to other people the setting: away from negative urban environment figure logic model for learning disabilities group. a, mechanisms that were most frequently found and with greatest spread across studies. shaded process outcomes equate to evidence from qualitative literature. t, theory based. d o i: . /p h r p u b l ic h e a l t h r e s e a r c h v o l . n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o . t h is w o rk w a s p ro d u ce d b y e lse y e t a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riva te re se a rch a n d stu d y a n d e xtra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro vid e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d ve rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls lib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e va lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n ive rsity o f s o u th a m p to n s cie n ce p a rk , s o u th a m p to n s o n s , u k . despite the current lack of conclusive evidence from rcts and robust effectiveness studies, the indications from the available evidence suggest that cfs are a promising alternative or adjunct to mainstream approaches for mental ill health. lack of choice, gender inequalities and overburdened statutory services indicate the need for a credible alternative treatment option. a concerted effort to increase awareness among commissioners of health care, front-line service providers and potential service users about care farming, and how and for whom it may work, is needed. models across europe that offer a more integrated approach between green care and statutory services could provide the learning of this. the evidence for care farming for other service user groups is not as well developed as for mental ill health but that is not to say there is not a need. disaffected youth, adult probation service users and people with dementia represent significantly large vulnerable population groups for whom current service provisions struggles to meet demand. the need to continue to improve and provide high-quality research in these areas is therefore pressing. the impact of care farms on quality of life among disadvantaged populations: a systematic review nihr journals library www.journalslibrary.nihr.ac.uk chapter the pilot study: background and methods the aim of the study was to pilot the design and methods of a natural experiment and economicevaluation to examine the effectiveness of cfs in improving the quality of life of probation service users undertaking cos. the findings from this study would indicate whether or not a larger, fully powered natural experiment was feasible to assess the cost–utility and/or cost–benefit of cfs in improving probation service user health and well-being and, ultimately, in reducing recidivism. objectives . identify factors that drive the decision of co allocation in order to identify potential selection bias and confounders as well as the most appropriate ways to collect data on these factors. . identify the most appropriate ways to gain informed consent, maximise recruitment and follow-up while minimising dropout and deliver questionnaires effectively among probation service users undertaking cos in cfs and comparator co settings. . identify the most appropriate ways to collect cost data, including health-care resource use by probation service users, cost of reoffending, costs of crime and gains of employability of probation service users in cfs and comparator co settings and explore the feasibility of measuring cost–utility. . identify differences in effectiveness in terms of quality of life, mental health, lifestyle behaviours and reoffending rates between the three cfs and between cfs and comparator settings in order to estimate variation and thus determine the intracluster correlation coefficient and sample size required in the follow-on study. . to develop a logic model based on probation service users’ experiences of serving their co on a cf and their perceptions of the impact that the cf has on their lives and well-being, taking into consideration seasonal changes, to illustrate the possible mechanisms that lead to changes in health and well-being among probation service users undertaking cos on cfs. care farming and probation service users care farming is one possible location where probation service users may be allocated to serve their co in england. a survey conducted in estimated that approximately one-quarter of cfs provided support for probation service users. however, more recent work by the study team suggests that at the time of this study, the number of cfs taking service users was much smaller. our investigations identified only three cfs in england holding contracts with probation services. our study period coincided with the official disbanding of probation services in may and subsequent establishment of new organisations as community rehabilitation companies (crcs) and the national probation service (nps). this organisation change may well have had an impact on the services commissioned by probation. community orders and the role of care farming the most serious crimes and those committed by serial offenders tend to result in a custodial sentence. offenders whose crime is considered to be less serious in nature can be given a co, which is completed in the local community under the supervision of probation services. the ultimate purpose of cos is to reduce the risk of reoffending through ‘requirements’ – these are interventions that the probation service user is ‘required’ to comply with to complete the order successfully. there are many types of requirements (figure ) and within these there may be multiple programmes, activities and projects. probation service users can be given one requirement or more depending on the nature of their offence, their offending history and their doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. lifestyle behaviours. cos vary in the degree to which they aim to rehabilitate or punish the probation service user. probation service users with the greatest needs, for example those with drug or alcohol problems, will be offered a co with a substantial rehabilitative requirement such as alcohol, drug or mental health treatment. irrespective of the level of need, all orders, however, must include a punitive element. in predominantly punitive orders, the main requirement might involve a form of community payback (cp) that includes, for example, litter picking or working in a charity shop. the exact process for allocation of a service user to different co sites is not clear and differs between probation regions. one of the aims of this study was to understand this process better, particularly to identify any potential confounders, that is, factors that were associated with the allocation decision and with the outcome (i.e. health outcomes and reconvictions) care farming as part of a co can be either rehabilitative or punitive depending on how the probation service views the role of care farming in probation and, in addition, how well the local cf itself has communicated its intentions, services and desired outputs. changes to probation services and impact on the research the privatisation of the nps was announced as the current research study began. the process lasted for the duration of the study. from the outset, this affected our capacity to carry out our research and the effects of this will be described throughout this report, particularly in relation to the pilot study. over and above the changes described throughout this chapter, there were three key time points when our study was most affected. the first key time point was june , when the official split in probation services took place, forming a nps (for the management of higher-risk offenders) and interim crcs. at this time, the crcs were not, in fact, new organisations but a temporary reorganisation of existing probation staff. at this time, information technology (it) services were split, staff were moved and new procedures were put in place. the second major event was the announcement of the preferred bidders in october . up to this point, various consortia had been preparing their bids, and some of these involved senior staff from existing probation services as well as organisations that were contracted to probation. this included one of the cfs within our pilot study. the third and final key event was in february , when the final contracts were awarded and changes in administrative processes were announced alongside changes in it services in response to this. alcohol treatment requirement attendance centre requirement community payback (unpaid work) curfew requirement drug rehabilitation requirement exclusion from certain areas mental health treatment requirement rehabilitation activity requirement prohibition from certain activities residence requirement supervision requirement programme requirement restriction on foreign travel cf may fit in here figure types of requirements within cos. adapted from type of community order. , crown copyright. contains public sector information licensed under the open government licence v . (www.nationalarchives.gov. uk/doc/open-government-licence/version/ /). the pilot study: background and methods nihr journals library www.journalslibrary.nihr.ac.uk http://www.nationalarchives.gov.uk/doc/open-government-licence/version/ / http://www.nationalarchives.gov.uk/doc/open-government-licence/version/ / throughout the study, and particularly at these key time points, staff were leaving or had changing roles, new contracts were being issued and it staff were under pressure to deliver new it systems in response to changes in assessments. all of these factors meant that establishing, and maintaining, reliable contacts who could respond to our requests and support our recruitment processes was particularly challenging. target population, sample sizes and timelines this was a pilot study aiming to assess feasibility, recruitment and follow-up rates, clarify selection biases and effects of confounding. as a pilot, the study was not powered to assess effectiveness, so a conventional sample size calculation was not considered appropriate. we estimated that, in order to determine sample size for a follow-on study that took account of between-cf effects and the possible effects of bias (i.e. response rates and dropout), a pilot sample of probation service users would be sufficient. with an expected loss to follow-up of %, this allowed a final sample size of participants ( cf attendees and comparator location attendees) with both baseline and follow-up data. we planned to recruit over three centres as follows: l centre – n = (n = from cf; n = from comparator site) over a -month period. l centre – n = (n = from cf; n = from comparator site) over a -month period. l centre – n = (n = from cf; n = from comparator site) over a -month period. our monthly targets were therefore set at participants in each centre. owing to delays in setting up and recruitment, which are explained in the remaining sections of chapter , we made adjustments to these monthly targets. our initial -month recruitment period for centre fell to months, and thus our monthly target became participants. in the other two centres we set a monthly recruitment target of participants, with an expected shortened recruitment period of months. outcome measures the primary outcome of the study was quality of life and well-being, which was derived from the clinical outcome in routine evaluation–outcome measure (core-om). core-om has previously been used to evaluate quality of life of probation service users. in particular, it has been used to assess the risk of self-harm among prisoners and among mentally disordered offenders in a high-security hospital. the core-om is also commonly used to measure psychological distress in evaluations of mental health interventions and it can be used to derive utilities that can then be transformed into qalys. the items cover four dimensions: subjective well-being, problems/symptoms, life functioning and risk/harm. the full version of the questionnaire can be found on the corm-ims website (www.coreims.co.uk; accessed october ). the secondary outcomes were: l individual-level data on reconvictions over a maximum -month period obtained from individual-level data from the pnc l mental well-being derived from warwick–edinburgh mental health and well-being scale (wemwbs) l measures of smoking, alcohol, drug use, diet and physical activity adapted from the general lifestyle survey and health survey of england l measures of the connectedness to nature , l exploration of health utility, as derived from the core- d based on the core-om, and qalys permitting a cost–utility analysis l exploration of the health and social care use cost and the cost of a co as an intervention. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. http://www.coreims.co.uk recruitment and follow-up plan the logistics of the recruitment and follow-up processes were bespoke to each site; however, the overall plan was to perform recruitment and follow-up face to face by a research assistant (ra). informed consent was obtained to take part in the study and also, independently, to access personal information from the probation and police services. when follow-up could not be performed face to face because of changes in a probation order, we used postal questionnaires. the overall aim was to complete follow-ups at the end of the co or if the completion of the order went beyond the -year recruitment period participants were followed up for months from the start of their order, regardless of whether or not their order had been completed. for probation service users who were ‘breached’, that is failed to comply with their order, we monitored their return back into the system and followed them up at the end of their subsequent co or at the end of the follow-up period. for those probation service users not returning back into the system, we offered a financial incentive to complete a postal questionnaire to maximise response rates. if they were given a prison sentence, they were noted as ‘lost to follow-up’ for the quality of life, health and well-being measures; however, their reconviction outcome was still assessed. approvals a critical initial step in gaining access to probation services was gaining both ethics and national offender management service (noms) approvals. ethics approval from the leeds school of medicine research ethics committee (somrec/ / ) was obtained promptly (december ) and approval from the noms given in february (noms; – ). the delay in obtaining noms approvals impacted on the start date for recruitment in our first site (see appendix , figure , for the impact on recruitment timeline). bespoke study documentation so as to distance ourselves from the probation service and the moj, we did not include their logos on any study documentation. probation staff considered this important because of the possibility that probation service users may not be honest in their questionnaire responses if they thought it would influence their co. in addition to standard research documentation (information sheet and consent forms), we developed a separate consent form granting permission to access individual data held on probation it systems and reconvictions data held by the police and moj on the pnc. the permission to access personal data form was developed with senior staff in the probation services and was a requirement of the information sharing agreements (isas) that were developed later on in the study. in addition, the signed forms were provided (as proof that permission had been granted to us) to the police in one centre in which an isa was not required under the freedom of information act. we also developed a service user assistance form and a service user details form. the service user assistance form enabled us to assess any difficulty with the outcome measures. the service user details form recorded (in addition to name, address, etc.) information on the type of requirement [i.e. unpaid hours or specified activity (sa)], number of unpaid hours/session, planned attendance days, number of hours completed at baseline and allocated project. this assisted with monitoring progression and changes through the probation order. development of the study procedures within the participating centres based on information provided by care farming uk, we contacted cfs that indicated that they worked with probation service users. farms that routinely took in probation service users through their local probation service in sufficient numbers to meet our recruitment targets were asked to take part in the pilot the pilot study: background and methods nihr journals library www.journalslibrary.nihr.ac.uk study through a telephone call and face-to-face visit. three cfs, (cf , cf and cf ) agreed to take part. we subsequently sought verbal agreement from the three local probation services (ps , ps and ps ) to conduct the study. collectively, we refer to these as centres , and , respectively. having ethics and noms approvals in place was key to progressing the study at each of the three centres. although at the time of study set-up probation was a nationalised organisation, there were key organisational differences between each of the probation services that led to the development of bespoke research approaches to probation service user recruitment and data acquisition. at each service, contact points varied from a single individual senior staff member (e.g. head of operations) at one site, to a mix of different levels of staff, both management and front line at the other services (table ). these staff were fundamental to establishing key information items that would enable identification, recruitment and follow-up of probation service users from both cf and comparator sites into the study. the key information items included: l the type of order given to the probation service users, who were subsequently allocated to cfs l the characteristics of probation service users allocated to cfs including, for example, risk of harm, risk of reoffending [offender group reconviction scale (ogrs)], age range and gender distribution, plus any restrictions (e.g. no one with unstable substance misuse or who was currently in employment) l when during the co the probation service users were allocated to the various requirements and projects l who decided on allocation and where this was done l when the probation service user commenced their requirement/project during the co. having established the type of order and the characteristics of the probation service users who attended cfs, we were then able to establish the characteristics of the comparator group. table probation staff roles in the pilot study main study activities centre a operations (clarifying characteristics of cf intake and comparators, explaining allocation process, identifying opportunities for embedding research processes; and access to projects) operations team manager; b assistant manager for operations; probation office; project officer; case manager; cp supervisor; cp manager; and court managers project manager; cp supervisor; b case manager; b director of interventions; and interventions manager b director of operations; b and seconded ra it (development of isas and provision of data) operations manager; performance and quality officer performing it searches; and training officer to explain it system for data requirements data provision not started information manager (later replacement also information manager) legal (preparing isas) staff from legal team it manager; and communications manager information manager as above hr (staff secondment to study) not applicable. recruitment and follow-up conducted by uol ra hr officer; centre manager head of operations; and hr staff to assist with interview process for ra hr, human resources; uol, university of leeds. a co-applicant was a key contact point. b key contacts at each centre. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. in two of the probation services, front-line staff, that is cp supervisors, project officers and some offender managers, were key project contacts. in the third probation service, the head of operations was the key person for liaising and information. each probation service used a different approach to allocating probation service users to various projects within cos. this meant that the way in which cfs were utilised within cos differed. therefore, the process of identification and recruitment of service users differed in each centre. the following section describes local service configurations, including the process of probation service user allocation and the approach taken to identification and recruitment at each centre. centre local service configuration and identification of target groups this probation trust covered five offices: two city-based offices and three more rural locations. one of the city offices acted as a head office. as with all cos, the time taken between court sentencing and first meeting at probation (during which probation service users are allocated to particular projects) was – days. likewise, the time between their initial appointment at probation and starting the co was often – days. in this centre, the cf was close to one of the more rural and smaller probation offices and, in general, only probation service users living in and around the local area could attend the farm. the cf was categorised by probation as a project within a cp requirement. this could be a stand-alone order (i.e. they were just required to work a specified number of hours unpaid) or be part of a multirequirement order in which the probation service user, in addition to completing their unpaid hours, was also required to complete another type of activity (for example, a drink–drive awareness programme). within this probation service, probation service users who were given a cp order were allocated to a single project to allow completion of the co in one site. the cf accepted those who: l had a low to medium risk of reoffending and harm (as categorised using a suitability model) l were judged by probation staff to have a good attitude to work (not formally assessed). the availability of the probation service users to work on the farm and the capacity of the farm itself were also factors that determined allocation. discussions with probation staff at the time revealed that the cf catered for stand-alone cp probation service users per day (open days per week). we estimated that we would have sufficient numbers to avoid recruiting people with multirequirement orders who would also be receiving other interventions. the information outlined above was used to identify a comparator group. we had to select another probation office as the source for the comparator group because the administering office for the cf attendees did not process sufficient numbers of similar probation service users. in order to streamline the recruitment and follow-up process, we sought to identify a single setting for our comparator population. staff in probation suggested that a clothes-sorting warehouse in the city of the head office would provide a group that was the most comparable and sufficient numbers for our study. the staff at the comparator site were contacted and agreed to support the research study by allowing our team to call them to check each day for new starters and to identify anyone nearing completion of their unpaid hours. settings the care farm the cf was a small social enterprise set on a reclaimed landfill site on the outskirts of the town. individuals were required to make their own way to the farm. open days a week, the farm took in probation service users every day. it did not cater for other vulnerable groups at that time, although it had done in the past. there had recently been a change of management at the farm, which was overseen by a board of the pilot study: background and methods nihr journals library www.journalslibrary.nihr.ac.uk trustees. at the time of recruitment, the day-to-day management was the responsibility of a qualified mental health nurse and an ex-community pay back supervisor (both male) from the local probation office. the farm was male dominated and very few, if any, female probation service users attended. a few volunteers also helped, some of whom were ex-probation service users. activities were a mix of indoor and outdoor work, including woodwork, working with animals (pigs, chickens, rabbits), fish farming, aquaponics and some horticulture and general site maintenance and improvement. probation service users were encouraged to eat together in the kitchen area, where a mid-day meal was provided using some of the food that had been grown on-site. probation service users were given tasks to do in small groups or individually depending on their preference and nature. the farm utilised the skills of probation service users to enhance the site, for example using a joiner to fit the kitchen. the comparator this was a charity-owned, clothes-sorting warehouse. it was open days a week and managed by three female staff. all activities were indoors and involved steam pressing, labelling and sorting clothes ready for distribution to local charity shops. most people worked in one main room with the radio on. lunch was not provided but there was a kitchen where hot drinks were available. although the warehouse took in probation service users with similar profiles to the cf, they were more stringent about taking in those who could commit to work. their financial dependence on turnover of clothes meant that they had daily targets to meet. both male and female probation service users attended the warehouse. recruitment set-up providing advanced notice of study to participants based on the information provided about the process of allocation, we initially planned to recruit probation service users to the study at the head office during their first probation appointment. the ethics committee requested that we attempt to inform potential participants about the study prior to the first appointment. in centre , we asked two court team managers attending local magistrates’ courts to give information sheets to all co probation service users immediately after sentencing. at the subsequent probation appointment, probation service users were then approached by a researcher with a view to recruiting them into the study. we asked probation service users if they had received the information sheet and none remembered receiving it. we therefore opted to provide information about the study during their first appointment and recruit at the same meeting. incentivising probation service user participation in the study (centre only) it was agreed that participation in the study would be enhanced if an incentive was provided. probation staff felt that probation service users would prioritise reducing their unpaid hours rather than spending time on the study. as we were unable to provide a financial incentive, because the probation service users were in effect working unpaid as their punishment, the most appropriate compromise was for the time taken on the research to count towards their unpaid hours. this was agreed at management level. establishing a base for recruitment: strategy during study set-up, the head office was trialling having group inductions twice weekly. probation service users were invited in batches of approximately to attend a session during which they received health and safety advice and were allocated to their projects. it was suggested that these group inductions would be the best time to recruit and administer baseline measures before cos commenced. to check that we were identifying all potentially eligible participants, we first compared actual attendance rates with planned attendances at the induction appointment. we did this for the first month of recruitment (march ). we observed that approximately of the estimated probation service users invited to the induction appointments actually attended. we use approximations here because the paperwork was not always up to date. we also noted that, during this month, of the ( %) service users were ineligible because they had not been allocated to attend either the cf or the comparator site. on checking with the cf and comparator site to identify any new starters whom we had not meet at the induction appointment, we found that some had been missed. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. the experience of recruitment at the probation office is also noteworthy. although the setting provided the opportunity to recruit many individuals within a short space of time, the atmosphere in the area allocated for recruitment was not conducive to informed consent. time was very limited because immediately after induction and project allocation, many probation service users wanted to leave or were waiting for a minibus to take them back to the other probation office. we were positioned in the waiting room with multiple probation service users and no private space to discuss the study. thus, we could be in the midst of recruitment with one probation service user but be approached by another. this experience combined with our findings in relation to attendances led us to conclude that the cf and the comparator site would be preferable recruitment locations, as they could provide a more private space. establishing a base for recruitment: strategy we approached staff at both sites, obtained permission to contact them on a daily basis to enquire about new starters and recruited on-site as close to the first day of the co as possible. we found staff to be approachable and accommodating. we monitored recruitment at the cf centre to ensure that we met our target requirements. our adjusted monthly recruitment target at this centre was participants per month based on a -month recruitment period (see recruitment and follow-up plan). by the end of the third month of recruitment (may ), we were meeting our monthly targets; however, we had concerns about sustaining these recruitment rates because of changes in the probation service. strategies to increase recruitment during the first months we recruited those on a stand-alone co (see local service configuration and identification of target groups for explanation). the purpose was to measure the impacts of one main intervention rather than multiple interventions (as in the case of a multirequirement order). however, given that the numbers that could be recruited were a potential concern, we opted to expand recruitment to include those on multiple requirement orders. furthermore, up to this point we performed recruitment on a -day standard working week. both comparator and cf sites operated on a -day working week. we considered that by recruiting at the weekends we could both identify more probation service users and also potentially recruit people who attended the project only at weekends because of full-time employment. as being in employment reduces the risk of reoffending, it was important to include these people as well. although our decision to expand the inclusion criteria and recruit at weekends was primarily target driven, it was also underpinned by concerns about the impact that organisational change (through the privatisation of probation services) would have on our capacity to conduct the study at the other centres. by maximising opportunities to recruit at centre , it was hoped that we could negate, to some degree, potential under-recruitment at the other centres. our monitoring also revealed that, despite telephoning the project sites regularly, some new starters were not being notified to us promptly. thus, we observed that some new starters had actually been attending the site for a number of days before we were informed. we decided not to recruit people who had completed more than four sessions, as this would be too far into the intervention to obtain a true baseline measure. our final inclusion and exclusion criteria for centre were as follows. inclusion l adult male or female probation service user serving a cp requirement. l allocated the cf or specified comparator site to complete their unpaid hours. l receiving either a stand-alone or a multirequirement co. exclusion l having completed four or more sessions at the cf or comparator site by the time of recruitment. the pilot study: background and methods nihr journals library www.journalslibrary.nihr.ac.uk monitoring progress with community orders and conducting follow-up at recruitment we recorded the number of unpaid hours allocated to the probation service user and also the number of hours already completed. as we were recruiting at the project site [i.e. the cf or the comparator location(s)], we were aware that probation service users were likely to have already completed some hours that may have included their induction at the probation office. in addition, although projects might receive notice of new starters the day before they were due to start, we were advised that they might not turn up. in addition, that time was needed on the first day for on-site inductions and settling in. therefore, the earliest that probation service users could be recruited to the study was halfway through the morning on their first day. recording the number of hours completed at baseline enabled us to assess the amount of intervention captured by the research study. discussions with probation staff revealed that follow-up would also have to be conducted at the project site, as no official exit interviews at probation offices were conducted. it was also explained that probation service users often did not attend their last day at the project, so attempting follow-up then would inevitably lead to a high loss to follow-up. to complicate matters further, although probation service users would arrange to work their unpaid hours on planned days, the days and frequency of attendance could change, as could the actual project site. thus, although we could predict when a probation service user might finish their order, it was of little practical value. in order to assist with monitoring users, we made contact with an administration hub and obtained permission to periodically request the number of unpaid hours remaining, the days attending and the actual project site. so as to avoid overburdening the administration hub, we estimated the halfway point for completion of the unpaid hours before contacting them. as a back-up, we continued to ask staff at the project sites if anyone was due to complete their unpaid hours. centre-specific changes and their impact on the study during the pilot study, we observed a number of changes to the organisations at this centre that impacted on our study. the privatisation process that ran throughout the study period coincided with a number of our key contacts either moving within the service or leaving probation all together. increased workloads on those remaining meant that there was less support for the study in general and a lack of staff continuity resulted in us having to identify new contacts and reiterate the purpose and methods. a key change in the centre was the closure of the cf. in the seventh month (september ) of recruitment, the cf ceased to take in probation service users from the probation service. all probation service users attending the farm were allocated to a range of other projects. some were reallocated to charity shops and others to supervision (travelling to various sites and supervised by a probation employee). we used our existing contacts in probation to try and trace the reallocated study participants. probation service users who were allocated to weekend supervision were not followed up because of safety concerns. the office was shut at the weekend and it was an all-male environment, often with probation service users who were considered unsuitable for a project without probation supervision. the cf was not reopened and, therefore, recruitment at this site stopped. the privatisation of probation meant that it services were split between the crc and the nps. on a practical level, this meant that the administrative hub did not always have access to nps it systems; therefore, we experienced difficulty in monitoring the completion of some probation orders. barriers to, and enablers of, project administration this section partly summarises centre-specific changes and their impact on the study but also describes the system-based challenges that were not a result of the privatisation process. we also summarise the factors that facilitated the operationalisation of the study with probation services, cfs and comparator sites. the barriers were: l front-line staff changing – there was a lack of staff continuity l staff had very limited research knowledge (both of its practical requirements and strategic importance) doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. l staff and probation service users had no knowledge of cfs, which was particularly an issue for the sub groups l sometimes similar levels of staff would hold different views about the characteristics of probation service users attending different projects, and so the most appropriate site for the comparators took time to clarify l there was a reliance on project site staff to remember who was new on-site and who was due to complete their co l not having an employee from probation seconded to recruit and follow-up study participants, which might have been an advantage, particularly for recruitment and monitoring with access to it systems. the main enablers were: l having a probation employee as a co-applicant facilitated access to many staff l having multiple contacts, which allowed us to develop relationships with front-line staff, providing direct access to probation service users l being able to develop good relationships with project site staff to support recruitment and follow-up. centre local service configuration and identification of target group this probation service had a throughput of approximately probation service users per year split across four local delivery units: north, west, south and mid. the western local delivery unit was the largest, working with probation service users annually. sa requirements, such as drug and rehabilitation requirements and alcohol treatment requirements, accounted for around one-third of service users, with the remaining two-thirds under a stand-alone cp order. all those attending the cf were serving a cp order. the unemployed or those with an order that included an educational component involving ≥ % of their order were not sent to the cf. the numbers attending the cf varied greatly from between per month to per week. the cf was in a rural location and probation service users were transported there from the local office. only those who could travel to the local office could attend the cf. in addition to the farm, there were other projects that fell under cp orders. these included maintenance of local authority parks, painting railings, litter picking and decorating a children’s centre. projects would change depending on the completion and cyclical nature of the work, so that some were one-off projects and others were rolling. settings probation service users on cp orders often attend more than one site throughout the week. the decision on which project probation service users attended depended on the availability and capacity of the project, and this could change on a day-to-day basis. there is some choice available to probation service users, but primarily they are expected to go to wherever they are sent to. attendance at a number of projects within one co meant that probation service users were neither pure cf attendees nor comparators. we were advised, however, that the number hours spent at the farm as part of the co would be recorded and available from the probation service. care farm the farm at centre was set up as part of a religious movement to support its charitable efforts. it was not originally set up as a cf and the owners had not planned to make the conversion. the move to take probation service users at the care farming came about through a contact at the probation service, who asked if one probation service user could volunteer as part of their co. the probation service user was supervised by a cp supervisor. both the farm owners and the probation staff were satisfied with the probation service user’s time at the farm and, subsequently, more probation service users were sent and a more formal arrangement ensued. the farm is situated on the grounds of the religious movement but has its own separate entrance and is distally located to the main buildings so that probation service users do the pilot study: background and methods nihr journals library www.journalslibrary.nihr.ac.uk not regularly come in contact with the members of the religious movement. on the farm there is a small outbuilding used by the workers for shelter and break times. probation service users attend up to days per week and are provided with a mid-day meal cooked onsite. as with the previous cfs, there is a preponderance of male service users. female probation service users who go to the farm tend to work in the kitchens. the farming activities involve planting and digging vegetables and some on-site maintenance. activities may also involve sweeping out the cow sheds and driving the tractor to and from the incinerator. working with the animals directly is rarely permitted. the skill sets of probation service users, such as plumbing and electrics, are used around the main buildings. although the farm is recognised by care farming uk as a cf, it does not have a care farmer. supervision of probation service users continues to be provided by probation services alongside a volunteer, who acts as a go-between for both the probation services and the religious movement. a farm supervisor from the religious movement is on-site but he is unable to communicate well with the probation service users because he speaks little english. opportunities to rehabilitate probation service users through learning new skills or by providing counselling are not in place on the farm. however, because probation service users were being sent to the farm as part of a cp supervision (which is seen as a punishment by the probation service) the concept of rehabilitation was possibly not relevant. comparator the intention was to recruit probation service users on cp orders from other local delivery units, assuming that resources would become available to us. we also considered that those service users attending the kitchens at the cf could be comparators as long as they did not undertake any farm work. recruitment set-up the plan was to advertise to a second a member of staff from the local probation service to act as a ra, as in centre . this was agreed by senior management and, initially, human resources (hr). however, unlike centre where staff had already been allocated to nps or crc some time prior to the official split, this centre waited until may and june to restructure, which was close to the date of the split. having partly processed the job description, the hr department considered that it would not be able to support the recruitment process further, despite the research co-ordinator and a member of the senior management team offering to process all applications and perform the interviews. the senior manager and the temporary cp project manager asked local offices if they would be willing to ask staff if they wanted extra work or a secondment. no staff were interested and we were informed that many felt insecure about their posts. at the same time, the temporary cp project manager, who had already provided us with some key contacts, also left and was replaced with an agency offender manager. we met with him, the manager at the religious establishment where the cf was located and its local volunteer. the cf was keen to take part and considered the research an important part of progressing its farm, particularly in the light of the changing relationship with probation and the concern that probation service users might not be allocated to the farm in the future. the cf agreed to recruit probation service users and follow them up. training and documentation were provided and we agreed to pay the farm for each probation service user recruited and followed up. we ensured that there was sufficiently secure storage for the documentation. both the manager of the religious establishment and its local volunteer received training in recruitment and data management. unfortunately, despite our best efforts, only four probation service users were recruited, two of whom were based in the kitchens and, therefore, were regarded as comparator respondents. centre-specific changes and their impact on the study our original contact at the probation service, a cp project manager, informed us in january that the study had been approved by senior management. we took the learning from centre where input from a senior manager enabled us to progress secondment of an internal ra. unfortunately, the cp project manager went on sick leave and it was some time before we could identify a replacement. we checked the progress of study approvals with senior management; while the managers were initially unaware of the study, they were supportive, and approval was granted quickly. the probation service managers provided us with the appropriate contacts for the it, legal, hr and finance departments. as explained above, the hr department declined to support us and this was a significant challenge to the study at this site. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. furthermore, the it department offered to help with the development of the isa; however, it did not have a working template and, despite sharing an existing one from one of the other centres (with their permission) with it, the isa did not progress. our understanding was that their work priorities had changed significantly with new systems being put in place and so our requests were overlooked. we opted to wait until we could assess how recruitment was proceeding and in the end considered that an isa was inappropriate, as we were able to recruit only four users from this site. centre local service configuration and identification of target groups centre included six probation offices across a wide geographical spread. there were approximately probation service users coming through this probation service, with just over half receiving an unpaid hours or sa requirement. within this service the cf was regarded as a sa requirement because of its considered capacity to meet individual needs and, therefore, rehabilitate probation service users. this was part of a minimum -month supervision order, that is, probation service users were required to meet with their probation officer on a regular basis. the cf was situated to the north of the probation area and all deemed suitable to attend were transported there from the five closest probation offices by the care farmer. therefore, unlike cf , eligibility in general was not geography determined. instead, suitability was determined by individual need. the farm took in those with an ogrs score of ≥ points, which was indicative of a high risk of reoffending, the unemployed and those in need of drugs rehabilitation (but with a stable habit). a later review of the types of probation service users attending the cf indicated that being unemployed was the main criterion and that ogrs scores varied substantially. further to this, later discussions with offender managers indicated that those sent to cfs also tended to have social difficulties – one of the more subjective criteria guiding decision allocations. sex offenders and individuals convicted of domestic violence were not accepted onto the farm. in comparison with unpaid hours requirements, sa requirements involved the completion of a set number of sessions. in the case of the cf it was sessions, with each probation service user attending two day sessions each week. the first induction session took place at probation. the farm took probation service users in maximum batches of – service users, allowing all to complete and ‘graduate’ at the same time. for practical reasons, each batch was split into two groups: one group attended on a tuesday and wednesday and the other attended on a thursday and friday. not all offices would be included in each batch, which meant that some probation service users could be placed on a waiting list, fulfilling other parts of their order until the next intake to the farm was due to start. there were approximately four intakes per year. identification of a comparator group was a challenge. the cf was part of a sa based on a defined need, and all those deemed suitable to attend could go as there was no geographical limit within the probation area. we considered looking at people receiving unpaid hours, but because these individuals have no identified rehabilitative need they were not considered comparable. having gathered information from probation about the other requirements and discussion with the steering group, we considered that anyone on a requirement or an accredited programme for the same need could be a comparator, even though the types of needs might be different from those attending a cf. settings care farm the farm was a cattle farm run by a family. farming activities were more traditional than in cf and included animal work, site maintenance, forestry machinery, woodwork, tractor driving and metalwork. the service users also carried out local community work as and when needed, for example clearing ice from the footpaths. a hot meal was provided each day and a post-lunch group session was also a key part of the day. one-to-one the pilot study: background and methods nihr journals library www.journalslibrary.nihr.ac.uk counselling was available. at the end of the sessions, a certificate (of a nationally recognised qualification) was presented to demonstrate the acquisition of skills and to support probation service users’ attempts to secure employment. as transportation to the farm was by minibus and service users were predominantly male, with social problems, it was considered by probation managers to be unsafe and uncomfortable for female probation service users. in the light of this, most service users at the farm were male. comparators unlike centre , the comparators attended different projects. given the geographical spread of probation offices, we drew service users from one main office at which throughput was considered adequate for the study. l the alcohol treatment requirement ran for between and months. most came with a supervision requirement, which was the same as the cf. l the women’s centre ran once a week over weeks and involved furniture restoration and provision of information on employment and finance. women generally had a low to medium seriousness of offence and, if using drugs, had to be stable users. the requirement came as part of a minimum -month order with supervision. l the drink-impaired driver’s programme consisted of – weekly -hour group sessions (accredited). l the domestic violence group sessions consisted of weekly group sessions plus four individual sessions. it included pre-programme sessions and at least four relapse prevention sessions. l general offending. l anger management. recruitment set-up incentivising probation service user participation in the study as study participants were those on requirement orders (excluding cp), we could not include time spent on the study as a contribution to completing their order. therefore, no incentive was possible at this centre. establishing recruitment for care farm attendees: strategy in consultation with the farm staff it was agreed that recruitment would begin on-site in april when the next intake of probation service users commenced. the aim was to recruit probation service users on the third day of their requirement: the first day was off-site induction at the probation office and the second day was on-site health and safety. as there were two groups (see local service configuration and identification of target groups for fuller explanation) this meant attending the site on two different days within the same week. we had been working towards advertising to second a member of staff from the local probation service to act as a ra; however, the ra was not yet in place at the time. therefore, two researchers based at the university of leeds aimed to travel to the farm to perform recruitment on the two separate days. at the first session, out of probation service users attended the day. on arrival at the farm, staff had already approached the probation service users and all but four declined. the remaining four were recruited in the presence of a member of staff from the farm. farm staff considered their presence to be important, as the researcher had not been checked via the criminal records bureau (now the disclosure and barring service) by their organisation, although they were centrally checked. we requested to attend the farm on the friday of the same week to recruit the second group, but this was declined as a result of farm staff shortages. our offer to attend the following week to recruit those who had not been approached in the previous week was declined. furthermore, we were unable to accept its offer to recruit the remaining intakes as, in the absence of any research experience, we could not be sure that the correct ethics procedures for informed consent would be adhered to. on consultation with the steering group, there was consensus that recruitment performed by cf staff would introduce potential bias and invalidate the data. subsequent discussions with the cf did not resolve the issue. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. establishing recruitment for care farm attendees: strategy we appointed a ra in may (seconded day per week to the project from within the probation service). through her contacts she arranged for the local unit performance officer to send her a list of who was due to attend the farm so that recruitment could take place before induction at probation. the care farmer had agreed that probation service users could be recruited before coming into contact with cf staff; the purpose being to dissociate the research process from the cf as a sa requirement. the concern was that interference from a researcher might deter individuals from attending the cf if they considered that the paperwork was part of the actual farm experience. the care farmer’s experience was that drop-out rate between the initial probation office induction and the on-site health and safety visit was already quite high. the next intake was due to start at the farm at the beginning of june. however, the list from the unit performance officer was provided only on the day of induction and, therefore, the small opportunity for recruitment at the probation office was missed. the delay was a result of a large-scale change in administration processes at the probation service as a result of the crc–nps split that had occurred at the beginning of the month. we contacted the care farmer who agreed that the ra could attend the farm in the subsequent week to recruit; however, once again, on arrival at the farm the probation service users had already been approached and all had declined. establishing recruitment for care farm attendees and comparators: strategy we then opted to identify those on the waiting list for the next intake and start recruitment early. we had previously tried to recruit those who were attending the farm in the initial stages of their order. using the waiting list presented a separate challenge, as between their recruitment and their attendance at the farm the probation service users would have been receiving supervision, that is another intervention. we decided that this was preferable to losing future attendees through administrative mishaps. our ra had access to court results and, therefore, could identify who had been allocated to a waiting list for the cf and the name of their offender manager. the ra made contact with various offender managers to request to attend at the next supervision appointment and perform recruitment at the end. this strategy proved to be successful. as the comparators were also undertaking a range of requirements that involved supervision appointments with their offender managers, this approach also proved to be successful with them. meeting our recruitment targets in centre there was constant throughput of probation service users to both the cf and the comparator sites. in centre , however, as the cf took in probation service users in only four annual batches and all probation service users who were eligible to attend were sent there, there was little opportunity to change processes to increase recruitment. likewise, the comparators attending the other requirements also started at prespecified dates and so opportunities to increase recruitment were limited. final inclusion/exclusion criteria for centre inclusion l an adult male or female service user attending a requirement order who was considered rehabilitative in nature. exclusion l community pay-back. l requirements that were not seen to be rehabilitative, such as curfews, restrictions on certain areas and residence and restriction on foreign travel requirements. l probation service users convicted of sex offences. the pilot study: background and methods nihr journals library www.journalslibrary.nihr.ac.uk monitoring progress with requirements and conducting follow-up each requirement ran for a predetermined number of weeks or sessions. the ra had access to it systems that enabled her to determine who was due for a supervision session that aligned with the completion of their requirement. the ra kept in contact with the various offender managers to arrange follow-up immediately after supervision sessions at the probation offices. centre-specific changes and their impact on the study our initial understanding of eligibility for the cf was that it was primarily available to those with an ogrs score of > . however, during our attempts to set up recruitment we reviewed a data set that revealed that most probation service users attending the farm had an ogrs score of < points and that lack of employment was the main criterion. it is unclear if this change in criteria was a response to organisational change in the local probation service. irrespective of the reason, a lack of clarity about the basis for allocation decisions regarding the cf led to some delays in establishing the make-up of the comparator population. at the time of the split in probation services into the crc and the nps (at the end may ) there were large-scale changes in administration. this affected communication between core staff and the ra, which meant that, as a result of the delays, we were unable to recruit a whole cohort (the july intake) for the cf. over the course of the privatisation process we observed a fall in the number of probation service users being sent to the cf. through discussions with staff in the probation offices, our understanding is that probation officers who were now working for the nps were not promoting the cf in the same way as those working for the crc. this was confirmed by our ra who, on talking to probation service users, became aware that they had misunderstood the purposes and activities provided on the farm. senior staff at probation were aware of this and were trying to address it to give all probation service users the same opportunities to attend. however, to our knowledge, this was only addressed towards the end of the recruitment period. the crc contract was officially signed at the beginning of february and with it came a number of new administrative procedures and paperwork. many staff left the probation service during the privatisation process and so existing staff were spread thinly to cover the workload. this slowed progress and affected both recruitment and follow-up. barriers to and enablers of project administration the following section partly summarises some of the findings from centre-specific changes and their impact on the study but also describes the system-based challenges that were not a result of the privatisation process. we also summarise the factors that facilitated the operationalisation of the study. barriers l having access to one senior member of staff rather than a mix that included front-line staff. l not having someone from inside probation dedicated to the study (initially). l only having a seconded ra for day per week. l being unable to recruit probation service users on the farm or at the induction. l having a reliance on probation officers giving time to the study to enable recruitment and follow-up. facilitators l having a seconded ra from within the probation service who had access to systems and was known, or became known, to probation officers during the course of the study. l having a senior member of staff who was able to sanction access to it systems and the ra appointment. l recruiting the ra prior to the split in probations services. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. data acquisition across all centres probation service user demographics and community order data in order to meet objective (see chapter , aims and objectives) we required data on the following items from probation services for each probation service user: l name l criminal record number l pnc l postcode l date of birth l ethnicity l nationality l immigration status l disability l gender l relationship status l pregnancy status l any other needs to help meet court order l employment l accommodation l index event (i.e. cp) ¢ offence ¢ sentence ¢ requirements and changes ¢ tier (pre and post including assessment) ¢ ogrs score ¢ offender manager l order outcome l requirement outcome l previous events (same information as index event) l cp hours completed l breaches/failures to comply l probation service area level (specific to west yorkshire) l registers. these data were held on an it case management system called ndelius. in order to access these data, a data sharing agreement (an isa) was required at each probation service. for full details of the process of obtaining these isas (see appendix ). reconviction data the second set of data to be obtained from our partner organisations was the reconviction data. these data were a record of the conviction date (court sentencing) and the offence committed. this is held on the pnc and each probation service user has a unique pnc number. for further details of process of obtaining pnc data (see appendix ). police national computer numbers provided by noms were used to request reconviction data from the moj. ten per cent of probation service users could not be found on the moj system, despite all unique pnc identifiers having been checked. the time taken to develop the isas for all sites is substantial; therefore, early planning is essential. the pilot study: background and methods nihr journals library www.journalslibrary.nihr.ac.uk the quantitative analysis presented in chapter is derived from the questionnaire data at baseline and at months, the routine ndelius data and the pnc data to identify reconvictions within months. statistical methods details the methods used in this analysis. statistical methods all analysis was completed as ‘intention to treat’, that is, it was analysed on the initial allocation of the service user for their co (i.e. cf: yes or no), ignoring non-compliance, deviations from the co and anything that happened after co allocation. although intention-to-treat analysis can be criticised for being too cautious, and thus being more susceptible to type ii error, this approach is recommended in the consolidated standards of reporting trials (consort) guidelines on the reporting of rcts, and it was felt that, as relatively fewer service users were recruited than originally expected, a comprehensive analysis of non-compliance could not be undertaken. differences in the service users’ characteristics at baseline between co allocation, arrival on site and completion of follow-up questionnaire were summarised and tested using regression models. the service users’ characteristics were placed in four categories: demographics, outcomes from questionnaires, health and lifestyle questions and health and social care use. depending on the characteristic being tested, the following summary statistics and models were used: median with interquartile range (iqr) and median regression for continuous non-normal characteristics; numbers with percentages and fisher’s exact test for categorical characteristics; and median iqr and negative binomial regression for counts. the same approach was used to show the differences in follow-up characteristics between co allocation and ndelius and offending characteristics by co allocation. differences in the changes in outcomes at follow-up between co allocations were summarised and explored using median (iqr) and median regression for continuous non-normal outcomes and numbers with percentages and multinomial logistic regression for categorical outcomes. the differences were shown as unadjusted and adjusted for baseline. as the follow-up outcomes were collected in only a fairly small number of service users, no further adjustment for differences in co allocation was possible. however, the reconviction status at months was available for service users; therefore, further adjustment for this outcome was possible. the differences in reconviction at months by co allocation were explored using cox proportional hazards regression models, for which the time to event was either the first reconviction date since recruitment for those with a reconviction or months if no reconviction occurred within that time. the unadjusted hazard ratio provides an estimate of the risk of -month reconviction for those allocated to a cf compared with those with other co allocations. however, this estimate of the risk is unadjusted for other differences in characteristics between the two co allocation groups that may also account for any differences in the risk of reconviction. adjustment for ‘confounding by indication’, as it is known, was carried out by applying the stabilised inverse probability treatment weights (iptw) to the cox proportional hazards regression model. the iptw produces a pseudo-population in which co allocation is independent of any of the variables considered to be potential confounders, enabling an unbiased estimate of the impact of cfs on -month reconviction rates compared with other cos. to calculate the iptw, a logistic regression model was used to estimate the probability that the service user was allocated to a cf. baseline and offending characteristics that showed differences between co allocation (see table , appendix ) were explored further to assess if they were potential confounders and, if so, if they should be included in the model to predict the probability that the service user was allocated to a cf. the associations between the potential confounders and the reconviction rate and co allocation were tested using cox proportional hazards regression models and logistic regression models, respectively. confounders were those characteristics associated with both reconviction rate and co allocation. furthermore, those doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. characteristics associated with reconviction rate, but not co allocation, were also included in the model to predict the probability that the service user was allocated to a cf. however, those characteristics associated with co allocation, but not reconviction rate, were not included. this method aims to include as many potential predictors as possible, even if their contribution is small, but is balanced in this case with the relatively small sample size (usually recommended to be at least service users). the inverse of the probability (iptw) was then used to adjust each participant’s risk of reconviction for the confounders, in which the reciprocal of the probability was used if the participant was not allocated to a cf. however, without a numerator this inverse weight is likely to be highly variable and so the inverse probability of treatment weight is stabilised. the numerator was either the proportion of participants allocated to a cf or its reciprocal for those participants allocated to other cos. the logistic regression models to predict if a participant was allocated to a cf can include only participants with complete data. in total, data items were included in the models used to produce the weights. of these, ( . %) were missing. to impute these missing data, we used switching regression, an iterative multivariable regression technique that retains an element of random variation in the estimates. within stata® (statacorp lp, college station, tx, usa), these methods are incorporated within the mice and mi estimate programs. for each variable, the distributions were compared with and without the imputed data to confirm that the imputed data did not alter the distribution of any of the variables. the imputed data were used only in the prediction of co allocation and were not included in the reconviction rate models, as the iptw-adjusted cox proportional hazards model accounts for these confounders. a number of different models were employed to explore the differences in the seasonal indicators (season, temperature, rainfall and sunshine) dependent on the outcome. to assess if there any seasonal differences in co allocation, median regression models were used for temperature, rainfall and sunshine and fisher’s exact test for season at time of allocation. to explore the association between temperature, rainfall, sunshine and season with core-om and wemwbs scores at both baseline and follow-up, median regression models were used. the pilot study: background and methods nihr journals library www.journalslibrary.nihr.ac.uk chapter results of the pilot study this chapter outlines the results from the statistical analysis of the pilot data. the methods used in thischapter are outlined in chapter , statistical methods. the purpose of the analysis was primarily to identify differences in effectiveness in terms of quality of life, mental health, lifestyle behaviours and reoffending rates between the three cfs and between cfs and comparator settings. this was done by comparing the characteristics at baseline and follow-up and changes in outcomes at follow-up between those allocated to cfs and those not, as well as by comparing the three cf sites. in order to compare the outcomes between the two co allocation groups, adjustment is required to account for any differences in characteristics within the two groups. adjustment for differences in co allocation was only possible for the reconviction status at months, as a result of smaller numbers at follow-up, and the analysis and results for this outcome are outlined. consequently, this analysis was also able to identify factors that drive the decision of co allocation, which was necessary in order to identify potential selection bias and confounders. description of sample: characteristics of respondents of the respondents initially recruited to the study, two subsequently withdrew from the study and so were removed from all subsequent analysis (figure ). for the respondents, ( %) were allocated to a cf for their co. at baseline, the only factors that were significantly different (at the % level) between those allocated or not to care farms were gender, the number of missing core-om questions, whether or not any substances or cannabis were used during the past weeks, smoking status and agreement with the statement ‘healthy foods are enjoyable’. table shows only those with significant differences. table , appendix , shows all characteristics, whether or not significant. ogrs scores (risk of reoffending) were significantly different (at the % level) between those allocated or not to cfs (table ). l only out of the ( %) service users allocated to cfs were women, compared with out of the ( %) allocated to other cos (p < . from fisher’s exact test). l although the median number of missing core-om questions for those allocated to cfs and to other cos were both zero, there are differences in the variability between the two groups (iqr cf – and non-cf – ). the difference in variability is reflected in the difference in the number of missing core-om questions between the two groups. on average, the cf group had a percentage change of % [ % confidence interval (ci) % to %] more missing questions than those allocated to other cos. l overall, % of those allocated to cfs reported that they had used substances in the past weeks compared with % of those allocated to other cos (p = . ). l in total, % of those service users allocated to cfs reported that they had used cannabis in the past weeks compared with % of those allocated to other cos (p = . ). l overall, % of those service users allocated to cfs were current smokers compared with % of those allocated to other cos (p = . ). l proportionally more respondents agreed than disagreed with the statement ‘healthy foods are enjoyable, of those service users allocated to other cos compared with those allocated to cfs, although more respondents allocated to the cfs neither agreed nor disagreed with the statement (p = . ). l mean ogrs scores at the time of disposal of the co were points higher ( % ci . to . points) among cf users than those at comparator sites. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. • centre , n = • centre , n = • centre , n = • centre , n = % • centre , n = % • centre , n = % screened (n = ) recruited (n = ) • not eligible,a n = • declined, n = ( %) • missed, n = • other reasons, n = excluded (n = ) • centre , n = • centre , n = • centre , n = cf (n = ) decline rates withdrawals (n = ) follow-up • centre , n = • centre , n = • centre , n = comparators (n = ) • centre , n = ( %)b • centre , n = ( %) • centre , n = ( %) order completed at allocated placement • centre , n = ( %) • centre , n = ( %) • centre , n = ( %) order completed at allocated placement • centre , n = • centre , n = • centre , n = lostc (n = ) • recruitment, n = • follow-up, n = ( % loss) • centre , n = • cf, n = ( %), comparator, n = ( %) • centre , n = • comparator, n = ( %) • centre , n = • cf, n = ( %), comparator, n = ( %) completed (n = , %) ○ site : cf, n = ; comparator, n = ○ site : cf, n = ; comparator, n = ○ site : cf, n = ; comparator, n = planned targets • centre , n = / ( %) • centre , n = / ( %) • centre , n = / ( %) postal response rates figure the consolidated standards of reporting trials diagram (consort) flow diagram: recruitment and follow-up pathways in pilot study. a, for the first months of the study, exclusion criteria included in breach/ custody, not allocated to cf or comparator setting, no risk data (not allocated), out of area and co with other requirement (n = ). however, after review of the early recruitment period, these criteria were removed. b, the cf closed to probation at the end of september. prior to this out of ( %) service users completed their co at their allocated placement, and the closure lead to participants being moved to another placement. c, lost to follow-up includes being in breach, in custody, not returning the questionnaires, not followed up and dead/ terminally ill. results of the pilot study nihr journals library www.journalslibrary.nihr.ac.uk none of the questionnaire outcome measures was significantly different between the two groups at baseline (table , appendix ). for example, the median core-om score was . in the cf group and . in those allocated to other cos. although the mean difference between the medians was . , the % ci of this estimate is – . to . , which includes zero; therefore, there is no significant difference in the core-om score between the two groups at the % significance level. the % ci is dependent on the sample size and, as only out of the respondents completed the core-om to derive scores, missing data will have contributed to a wider estimate of the ci than if all respondents had completed the core-om. further breakdown of which particular questions were not completed on the core-om, wemwbs and connecting with nature questionnaires can be found in table , appendix . using the respondents’ postcode we were able to assign the index of multiple deprivation (imd) ranking via lower super output area. these rankings were then placed into quintiles: first, for quintiles within the cohort and, second, matched to quintiles for england. the second of these shows that the evaluating cos (eco) study cohort was from more deprived quintiles than the english population in both co allocation groups (see table , appendix ). for example, % of respondents were from the most deprived table baseline characteristicsa by co allocation characteristic valid number allocated to cf (all sites, n = ) meanb or percentagec difference between co allocation difference in categories between co allocation, p-value d no (n = ) yes (n = ) demographics gender: female, n (%) ( . ) ( ) < . outcomes from questionnaires core-om number of missing questions, median (iqr) ( – ) ( – ) . ( . – . ) health and lifestyle questions used substances during the past weeks: yes, n (%) ( ) ( . ) . number of substances used during the past weeks, mean ( % ci) ( to ) ( to ) e . (– . to . ) cannabis: yes, n (%) ( . ) ( . ) . smoker: yes, n (%) ( . ) ( ) . ‘healthy foods are enjoyable’, n (%) . strongly agree e ( . ) ( . ) agree ( . ) ( . ) neither agree nor disagree ( ) ( . ) disagree ( ) ( . ) strongly disagree ( . ) ( . ) a table , appendix , contains all baseline characteristics by co allocation. b mean difference (and % ci) calculated from median regression. c percentage difference (and % ci) calculated from negative binomial regression. d difference in proportions of categories between co allocation calculated from fisher’s exact test. e too few service users to conduct test in differences in co allocation. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. quintile in england in both co allocation groups. comparing the imd quintiles of the two co allocation groups within the cohort shows some differences in the deprivation profile. proportionally more of those allocated to other cos were in the most deprived quintile than those who had been allocated to a cf ( . % vs. . %, respectively) and in the least deprived quintile ( . % vs. . %, respectively). conversely, proportionally more of those allocated to a cf were in the middle quintile than those allocated to other cos. although these differences are not significant (p = . ), there is some indication that this may be a potential confounder when looking at the difference in the change in outcomes between the two groups. table explores whether or not the baseline characteristics of the respondents were different between the three sites. (table only shows those with significant differences, see table , appendix , for all characteristics.) although summary statistics for each of the three sites are shown, testing for whether or not there were significant differences in the characteristics between both site and co allocations could be carried out with only site and because of the small number of service users recruited at site . the interaction between site and co allocations for each characteristic was used to test these differences. owing to the small numbers in the categorical characteristics within each sites, testing of the interaction was carried out on only a limited number of characteristics. table potential variables to be included in inverse probability weight potential variable association with, hazard ratio ( % ci) include in iptw reoffending within months allocation to cf age at recruitment: decades . ( . to . ) . ( . to . ) gender: female vs. male . ( . to . ) . ( . to . ) has disability: yes vs. no . ( . to . ) . ( . to . ) probation type: nps vs. crc . ( . to . ) . ( . to . ) ✓ used substances during the past weeks: yes vs. no . ( . to . ) . ( . to . ) ✓ smoker: yes vs. no . ( . to . ) . ( . to . ) ✓ ogrs score at disposal: point increase . ( . to . ) . ( . to . ) ✓ imd: compared with most deprived quintile within cohort . . . ( . to . ) ( . to . ) . ( . to . ) ( . to . ) . ( . to . ) . ( . to . ) – least deprived . ( . to . ) . ( . to . ) white british according to ndelius: no vs. yes . ( . to . ) . ( . to . ) disposal type: suspended sentence order vs. co . ( . to . ) . ( . to . ) ‘healthy foods are enjoyable’: compared with strongly agree/agree . . ✓ neither agree nor disagree . ( . to . ) . ( . to . ) disagree/strongly disagree . ( . to . ) . ( . to . ) note the four characteristics that were identified for inclusion in the iptw, apart from probation type, were associated with both reconviction within months or allocation to cf, as indicated by bold. results of the pilot study nihr journals library www.journalslibrary.nihr.ac.uk table baseline characteristics a by site characteristic site p-value for interaction between co allocation and sitec (n = ) (n = )b (n = ) n allocated to cf n allocated to cf n allocated to cf no (n = ) yes (n = ) no (n = ) yes (n = ) no (n = ) yes (n = ) demographics age (years) at recruitment, median (iqr) ( – ) . ( – ) . ( – ) . ( – ) ( – ) ( – ) . outcomes from questionnaires core-om score, mean ( % ci) . ( . to . ) . ( . to . ) . ( . to . ) . ( . to . ) . ( . to . ) . ( . to . ) . health and lifestyle questions number of days of ≥ minutes’ physical activity in the last week, median (iqr) ( – ) ( – ) . ( – ) . ( – ) ( – ) ( – ) . a table , appendix , contains all baseline characteristics by site. b too few subjects to conduct test in differences in co allocation by site. c interaction term tested from median regression and from negative binomial regression. site was excluded. d o i: . /p h r p u b l ic h e a l t h r e s e a r c h v o l . n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o . t h is w o rk w a s p ro d u ce d b y e lse y e t a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riva te re se a rch a n d stu d y a n d e xtra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro vid e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d ve rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls lib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e va lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n ive rsity o f s o u th a m p to n s cie n ce p a rk , s o u th a m p to n s o n s , u k . there are significant differences in the ages of the recruits between sites and between co allocations within sites (p = . ). in site , those participants allocated to the cf had a median age of . years and those allocated to other cos had a median age of years. in site , those participants allocated to the cf had a median age of years and those allocated to other cos had a median age of years. there were significant differences in the core-om scores between sites and between co allocations within sites but not for the wemwbs and connected to nature scores (core-om, p = . ; wemwbs, p = . ; and connected to nature, p = . ). there were significant differences in the characteristic of ‘number of days of ≥ minutes’ physical activity in the last week’ between sites and between co allocation within sites (p = . ). no other baseline characteristics appeared to show differences between sites and between co allocations within sites, although the comparisons are limited as a result of the relatively small numbers within sites. loss to follow-up with reasons of the respondents, ( . %) completed the follow-up (table ). those respondents followed up, through the completion of the questionnaire, were older, more likely to be in the nps rather than the crc, did not smoke, used fewer substances in the last week and used fewer health services in the past month than those not followed up. the mean difference in the median age between those followed up and those who were not was years ( % ci . to . years). there are no other differences in baseline characteristics between those respondents followed up or not including the proportion allocated to the cfs (p = . ) (see table , appendix ). table baseline characteristicsa of respondents by follow-up characteristic valid number followed up meanb or percentagec ( % ci) difference between follow-up difference in categories between follow-up, p-valuedno (n = ) yes (n = ) demographics age (years) at recruitment, b median (iqr) ( . – ) . ( – ) ( . – . ) probation type, n (%) crc ( . ) ( ) . nps ( . ) ( ) health and lifestyle questions number of substances used during the past weeks, e median (iqr) ( – ) ( – ) – . (– . to – . ) smoker: yes, n (%) ( . ) ( . ) . health and social service use number of health services (out of ) used during the past month, e median (iqr) ( – ) ( – ) – . (– . to – . ) a table , appendix , contains all baseline characteristics by follow-up. b mean difference (and % ci) calculated from median regression. c percentage difference (and % ci) calculated from negative binomial regression. d difference in proportions of categories between co allocation calculated from fisher’s exact test. e too few subjects to conduct test in differences in co allocation. results of the pilot study nihr journals library www.journalslibrary.nihr.ac.uk follow-up and outcomes for the respondents at follow-up, those that were allocated to a cf (n = ) were more likely to have changed their co during the follow-up period, have a higher core-om score, have used substances and used more of them during the past weeks and were less likely to agree with the ‘healthy foods are enjoyable’ statement (table ). in total, % of those respondents allocated to a cf had changed their co, compared with only . % of those allocated to other cos (p = . ). there was an indication that those respondents allocated to a cf had, on average, fewer hours to complete of their co at follow-up than those allocated to other cos (mean difference – . points, % ci – . to . points), although this was not significant (table , appendix ). those service users allocated to a cf had a higher core-om score at follow-up, on average . points higher ( % ci . to . points), than those allocated to other cos. the other questionnaire outcomes showed no significant difference between groups. further breakdown of particular questions on the core-om, wemwbs and connecting with nature questionnaires at follow-up can be found in table , appendix . table follow-up characteristicsa of respondents by co allocation characteristic valid number allocated to cf (all sites, n = ) meanb or %c ( % ci) difference between co allocation difference in categories between co allocation, p-valuedno (n = ) yes (n = ) demographics co changed during the follow-up period: yes, n (%) ( . ) ( ) . outcomes from questionnaires core-om score, b mean ( % ci) . ( . to . ) . ( to . ) . ( . to . ) health and lifestyle questions used substances during the past weeks: yes, n (%) ( . ) ( . ) < . number of substances used during the past weeks, c median (iqr) e ( – ) ( – ) . ( . – . ) ‘healthy foods are enjoyable’, n (%) . strongly agree ( . ) ( . ) agree ( . ) ( . ) neither agree nor disagree ( . ) ( . ) disagree ( . ) ( . ) strongly disagree ( ) ( . ) a table , appendix , contains all follow-up characteristics by co allocation. b mean difference (and % ci) calculated from median regression. c percentage difference (and % ci) calculated from negative binomial regression. d difference in proportions of categories between co allocation calculated from fisher’s exact test. e too few subjects to conduct test in differences in co allocation. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. for the respondents, it was possible to link with ndelius and reconviction information. three respondents did not consent to access of their ndelius information and it was not possible to link respondents to their reconviction data. of the allocated to a cf (n = ), the respondents had a higher ogrs score at disposal (a term used in the criminal justice system when an order is given by the court once proceedings are complete), were more likely to be white british and more likely to report having a disability than those allocated to other cos (table ). the median ogrs score at disposal was, on average, points higher ( % ci . to . points) in those service users allocated to a cf than those allocated to other cos. furthermore, there are significant differences in the ogrs scores between sites and between co allocations within sites (p = . ). in site , those service users allocated to the cf had a median ogrs score of . points (iqr – points) and those allocated to other cos had a median score of points (iqr – points). in site , those service users allocated to other cos had a median score of . points (iqr – points), although only one respondent allocated to a cf had an ogrs score ( points). in site , those service users allocated to the table ndelius and probation service user characteristics by co allocation ndelius and offending characteristic valid number allocated to cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) number of days from disposal to recruitment, a median (iqr) . ( to . ) . ( . to ) (– . to . ) ogrs score at disposal, b mean ( % ci) ( . to ) . ( . to ) ( . to . ) disposal type, n (%) . cja: co or ora co ( ) ( ) cja: suspended sentence order ( ) ( ) ethnic group, n (%) . white british ( . ) ( ) white: other ( . ) ( . ) asian or asian british ( . ) ( ) black or black british ( . ) ( ) other or mixed ( . ) ( . ) has disability: yes, n (%) ( . ) ( . ) . mental illness/dyslexia: yes ( . ) ( . ) . reduced mobility/physical capacity/hearing: yes ( ) ( . ) other: yes ( . ) ( . ) accommodation status at disposal, n (%) . permanent independent housing ( . ) ( . ) friends/family ( . ) ( . ) transient/short-term accommodation/supported housing/no fixed abode ( . ) ( . ) results of the pilot study nihr journals library www.journalslibrary.nihr.ac.uk cf had a median ogrs score of points (iqr – points), although those allocated to other cos had a median ogrs score of points (iqr . – points). the ethnic group stated by the respondents at the time of the disposal shows that % of those service users allocated to a cf identified as white british compared with % of those allocated to other cos (p = . ). at disposal, % of those service users allocated to a cf identified as having a disability compared with % of those allocated to other cos (p = . ). from the reconviction information, % of those service users allocated to a cf had a reconviction within months, compared with % of those allocated to other cos (p< . ). there were no significant differences in the length of time and the number of convictions for the first reconviction within months between the cos allocation groups. this comparison of the reconvictions rates does not take into account the length of follow-up for each respondent, which is a more appropriate analysis and is outlined in reconvictions. the questionnaire outcomes scores at follow-up, outlined in table , are limited in being able to show differences between the co allocation groups, as it does not account for each respondent’s starting point. the change from baseline to follow-up in the questionnaire outcomes is a better assessment on the impact of cfs compared with other cos (table ). in general, there were no differences in the change in the questionnaire outcomes between the co allocations, even with adjustment for baseline. table ndelius and probation service user characteristics by co allocation (continued) ndelius and offending characteristic valid number allocated to cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) employment status at disposal, n (%) . full-time employed, self-employed, education or training ( . ) ( . ) part-time employed or self-employed ( ) ( ) unemployed or unable to work ( . ) ( . ) other ( . ) ( . ) risk of self-harm at disposal, n (%) . low risk ( . ) ( . ) medium risk ( . ) ( . ) reconviction within months of recruitment, n (%) ( . ) ( . ) < . number of days from recruitment to reconviction within months, a median (iqr) . ( to ) ( to . ) – . (– . to . ) number of convictions if reconvicted within months of recruitment, b median (iqr) ( to ) ( to ) – . (– . to . ) cja, criminal justice act; ora, offender rehabilitation act. a mean difference (and % ci) calculated from median regression. b percentage difference (and % ci) calculated from negative binomial regression. c difference in proportions of categories between co allocation calculated from fisher’s exact test. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table difference between co allocation in change in outcomes from baseline to follow-up: unadjusted and adjusted by baseline change in outcome valid number allocated to cf (all sites, n = ) meana ( % ci) difference between co allocation relative risk ratio ( % ci) of changing category from no change, compared with controls b difference in change in outcome, compared with those not attending cf, adjusted by baseline,a,b mean or relative risk ratio ( % ci)no (n = ) yes (n = ) core-om score, a mean ( % ci) – . (– . to . ) – (– to . ) . (– . to . ) . (– . to . ) core-om change category, b n (%) clinically significant improvement ( . ) ( . ) . ( . to . ) . ( . to . ) no clinically significant change ( . ) ( . ) . . clinically significant deterioration ( . ) ( . ) . ( . to . ) . ( . to . ) wemwbs score, a median (iqr) (– to ) (– to ) – (– . to . ) – . (– . to ) connected to nature score, a median (iqr) – . (– . to . ) (– . to . ) . (– . to . ) . (– . to . ) connecting with nature (nature relatedness scale) change category, b n (%) more interconnected ( . ) ( ) . ( . to . ) . ( . to . ) no change ( . ) ( ) . . less interconnected ( . ) ( ) . ( . to . ) . ( . to . ) number of substances used during the past weeks, a median (iqr) ( to ) ( to ) (– . to . ) (– . to . ) number of days of ≥ minutes’ physical activity in the last week, a median (iqr) ( to ) (– to . ) (– . to . ) – . (– . to . ) number of days out of the last seven drank alcohol, a median (iqr) (– to ) (– to ) (– . to . ) . (– . to . ) number of cigarettes/roll-ups per day,a median (iqr) ( to ) ( to ) (– . to . ) (– . to . ) number of health services (out of ) used during the past month, a median (iqr) (– to ) ( to ) ( to ) (– . to . ) r e s u l t s o f t h e p il o t s t u d y n ih r jo u rn a ls lib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k change in outcome valid number allocated to cf (all sites, n = ) meana ( % ci) difference between co allocation relative risk ratio ( % ci) of changing category from no change, compared with controls b difference in change in outcome, compared with those not attending cf, adjusted by baseline,a,b mean or relative risk ratio ( % ci)no (n = ) yes (n = ) number of social services (out of ) used during the past month, a median (iqr) ( to ) ( to ) –c ( to ) number of medications prescribed by a doctor or other health-care professional in the past month, a median (iqr) ( to ) ( to ) (– . to . ) (– . to . ) b healthy foods are enjoyable’ agreement change category, b n (%) more positive view by follow-up ( . ) ( . ) . ( . to . ) . ( . to . ) no change ( . ) ( ) . . more negative view by follow-up ( . ) ( . ) . ( . to . ) . ( . to . ) a mean difference in median change between co allocation (and % ci) calculated from median regression. b relative risk ratio in changing category over follow-up in those in cf group compared with the control calculated from multinomial logistic regression . c too few subjects to conduct test in differences in co allocation. d o i: . /p h r p u b l ic h e a l t h r e s e a r c h v o l . n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o . t h is w o rk w a s p ro d u ce d b y e lse y e t a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riva te re se a rch a n d stu d y a n d e xtra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro vid e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d ve rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls lib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e va lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n ive rsity o f s o u th a m p to n s cie n ce p a rk , s o u th a m p to n s o n s , u k . further details of the results for specific outcomes are outlined in the following sections. clinical outcome in routine evaluation–outcome measure results the median change in core-om score in those service users allocated to a cf was – point (iqr – to . points) and – . points (iqr – . to . points) in those allocated to other cos (see table ). there was no significant difference in the change in the core-om score between the two groups. on average, there was a . -point difference ( % ci – . to . points) in the median change in core-om score of those service users allocated to a cf compared with those allocated to other cos. even with adjustment for baseline core-om score, there is still no significant difference in the change in core-om score between the two groups. on average, there was a . -point difference ( % ci – . to . points) in the median change in core-om scores between the co allocation groups. when the change in core-om is classified by clinically significant improvement, deterioration or no change, there still remains no association between core-om change category and co allocation group; although, with small numbers it is not appropriate to fully interpret these results further. warwick–edinburgh mental health and well-being scale the median change in wemwbs score in those service users allocated to a cf was points (iqr – to points) and in those allocated to other cos was points (iqr – to points) (see table ). there was no significant difference in the change in wemwbs score between the two groups. on average, there was a – -point difference ( % ci – . to . points) in the median change in wemwbs score of those service users allocated to a cf compared with those allocated to other cos. even on adjustment for baseline wemwbs score there is still no significant difference in the change in wemwbs score between the two groups. on average, there was a – . -point difference ( % ci – . to . points) in the median change in wemwbs scores between the co allocation groups. connectedness to nature scale the median change in connectedness to nature scale score in those service users allocated to a cf was points (iqr – . to . points) and in those allocated to other cos was – . points (iqr – . to . points) (see table ). there was no significant difference in the change in connectedness to nature scale score between the two groups. on average, there was a . -point difference ( % ci – . to . points) in the median change in connectedness to nature scale score of those service users allocated to a cf compared with those allocated to other cos. even with adjustment for the baseline connectedness to nature scale score, there is still no significant difference in the change in connectedness to nature scale score between the two groups. on average, there was a . -point difference ( % ci – . to . points) in the median change in connectedness to nature scale scores between the co allocation groups. when the change in nature relatedness scales from baseline to follow-up is classified as more interconnected, less interconnected or no change, there is no association between nature relatedness scales change category and co allocation group. with adjustment of the baseline nature relatedness scale score, the risk of those service users allocated to the cf being more interconnected rather than no change according to nature relatedness scales was . points higher ( % ci . to . points) than those allocated to other cos. health and lifestyle there was no change in the number of substances used, number of days of physical activity, number of days drank alcohol, number of cigarettes and number of medications prescribed in either co allocation group (see table ). therefore, there were no differences in the changes in these health and lifestyle indicators, even on adjustment for baseline. for the level of agreement to the statement ‘healthy foods are enjoyable’ question at baseline and follow-up, which was classified as having a more positive view, more negative view or no change by follow-up; there is no association between ‘healthy foods are enjoyable’ agreement change category and co allocation group. with adjustment of the baseline agreement, the risk of those service users allocated to the cf being more positive to the statement rather than no change by follow-up was % less likely ( % ci . to . ) and being more negative was almost three times more likely ( % ci . to . ) than that of those allocated to other cos. results of the pilot study nihr journals library www.journalslibrary.nihr.ac.uk health and social service use there was no change in the number of health and social services used in either co allocation group (see table ). therefore, there were no differences in the changes in these the number of health and social services, even with adjustment for baseline. reconvictions the potential confounders for inclusion in the weight to adjust for differences in the co allocation groups, so as to provide an unbiased estimate of the difference in the risk of reconviction within months, are provided in table . on assessing whether or not these characteristics were associated with reconviction within months or allocation to a cf, five characteristics were identified for inclusion in the iptw: probation type at baseline; used substances during the past weeks before baseline; smoker at baseline; ogrs score at baseline; and agreement with the ‘healthy foods are enjoyable’ statement. apart from probation type, these characteristics were associated with both reconviction within months or allocation to a cf, as indicated by bold text in table . probation type was found to be associated only with reconviction within months and not allocation to a cf, and so was identified for inclusion in the iptw. the unadjusted risk of reconviction within months is over three times higher ( % ci . to . ) in those allocated to cfs than those allocated to other cos (table ). with adjustment for differences in the co allocation groups, so as to provide an unbiased estimate of the difference in the risk of reconviction within months, the risk of reconviction within months is % higher in the cf group. however, there is no significant difference in the risk of reconviction between the co allocation groups (hr . , % ci . to . ). this would indicate that any difference in reconviction between the two co allocation groups results from differences in the characteristics of those service users allocated to a cf and those allocated to other cos. inverse probability treatment weight diagnostics and sensitivity analysis to assess the performance of the iptw to adjust for differences in the co allocation groups, it is recommended to review the iptws between the two groups, including an assessment of the balance of confounders (table ). as expected, the unstabilised iptw is more variable than the stabilised; therefore, the latter is used in the cox proportional iptw-adjusted model. the balance of the stabilised iptws between the two groups is appropriate (standardised difference < . ) in all variables, expect for probation type. this is confirmed when we review the standardised differences for each variable before and after adjustment by iptws (figure ). the standardised differences are greatly reduced by the iptw, except for probation type. if we exclude this variable from the iptw, the adjusted hr would be . ( % ci . to . ), which is similar to the iptw-adjusted hr including probation type (hr . , % ci . to . ). as exclusion of this variable does not change the overall results of there being no difference in the -month reconviction rate between the two co allocation groups (with adjustment for the difference between groups), it was decided to leave probation type in the iptw, as it does make some adjustment for the differences between the two groups. table reoffending rate within months by co allocation: unadjusted and adjusted by iptw intervention association with reconviction within months, hr ( % ci) unadjusted adjusted by iptw cf no (n = ) . . yes (n = ) . ( . to . ) . ( . to . ) doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. seasonality there are no differences in the seasonal indicators between the co allocation groups, at the time of disposal (table ), indicating that there were no seasonal differences in allocation. there was no difference in the median temperatures, mean percentage difference from average centimetres of rain and mean percentage difference from average hours of sunshine between those allocated to a cf and other cos. there were no significant differences in co allocation by season (p = . ). table inverse probability treatment weight diagnostics variable included in iptw cf (all sites, n = ) standardised differenceno (n = ) yes (n = ) overall unstabilised iptw mean ( % ci) . ( . to . ) . ( . to . ) median (iqr) . ( . – . ) . ( . – . ) minimum, maximum . , . . , . overall stabilised iptw mean ( % ci) . ( . to . ) . ( . to . ) median (iqr) . ( . – . ) . ( . – . ) minimum, maximum . , . . , . mean stabilised iptw standardised difference probation type: nps vs. crc . . – . used substances during the past weeks: yes vs. no . . – . smoker: yes vs. no . . . ogrs score at disposal: point increase . . . healthy foods are enjoyable’: compared with strongly agree/agree neither agree nor disagree . . – . disagree/strongly disagree . . . ogrs probation_type substance_any_ smok_ny_ v a ri a b le s in c lu d e d _lhlthfood_ _lhlthfood_ – . . standardardised difference . before adjustment after adjustment figure standardised difference in iptw of variables included. results of the pilot study nihr journals library www.journalslibrary.nihr.ac.uk at baseline, the only seasonal indicator that showed a significant association was between the wemwbs score and rainfall (table ). with each point increase in wemwbs score, the percentage difference from average rainfall is increased by almost % (median . %, % ci . % to . %). there were no significant differences in the core-om and wemwbs scores at baseline based on which season the baseline questionnaire was completed. no associations were found between core-om score at baseline and temperature, rainfall or sunshine and between wemwbs score with temperature or sunshine. at follow-up, there are no seasonal indicators associated with the core-om or wemwbs scores. furthermore, our findings show that collection and linkage of seasonality data would be feasible in a larger study. discussion of statistical methods the relatively small number of service users, particularly those at follow-up, should be considered when we review the conclusions of the results from the pilot study. in that context, we should also consider the number of statistical tests and models included in the analysis, that is, the potential problem of multiple testing. to negate multiple testing we have focused the analysis on the estimates of differences and changes (and corresponding % ci) rather than relying solely on p-values. this does not fully invalidate the problem, as the % ci indicates whether or not there are significant differences or changes at the % level and so correspond to the p-values. however, by estimating the differences and changes, we can better understand the impact of any change or difference between the co allocation groups. to assist the consideration of the sample sizes involved and their impact on what differences or changes can be estimated, table shows a post hoc analysis of numbers involved in the four main outcomes. for the three questionnaire outcome measures (core-om, wemwbs and connectedness to nature scale) we used the mean change score at follow-up [and standard deviation (sd)] by co allocation group with the number of respondents to calculate the corresponding effect size that this difference in change represents. from this, we can then calculate the power (given α = . ) for that effect size and number of respondents, that is, the probability that the test correctly rejects the null hypothesis (no difference) when the alternative hypothesis (difference in groups) is true. table differences in co allocation by season season characteristic at time of disposal valid number cf (all sites, n = ) meana ( % ci) difference between co allocation difference in categories between co allocation, p-valuebno (n = ) yes (n = ) temperature (°c), median (iqr) . ( . to . ) . ( . to . ) (– . to . ) rain percentage difference from average, median (iqr) – (– to ) – (– to . ) – (– . to . ) sunshine percentage difference from average, median (iqr) – . (– to ) (– to ) (– . to . ) season, n (%) . spring ( ) ( . ) summer ( . ) ( ) autumn ( . ) ( . ) winter ( . ) ( . ) a mean difference (and % ci) and correlations ( % ci) calculated from median regression. b difference in proportions of categories between co allocation calculated from fisher’s exact test. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table differences in baseline and follow-up characteristics by season baseline and follow- up characteristic valid number season all spring summer autumn winter at baseline questionnaire or recruitment core-om score, median (iqr) . ( . – ) . ( . – . ) . ( . – . ) . ( . – . ) mean ( % ci) difference from spring a – – . (– . to . ) – . (– . to . ) . (– . to . ) wemwbs score, median (iqr) ( – ) ( – ) ( – ) ( . – . ) mean ( % ci) difference from spring a – (– . to . ) (– . to . ) (– . to . ) temperature: average for month correlation ( % ci), at baseline a with core-om – . (– . to . ) with wemwbs – . (– . to . ) cf, median (iqr) temperature no . ( . – . ) yes . ( . – . ) rain: percentage difference from average correlation ( % ci), at baseline a with core-om – . (– . to . ) with wemwbs . ( . to . ) cf, median (iqr) percentage difference from average no – (– to ) yes – (– to ) sunshine: percentage difference from average correlation ( % ci), at baseline a with core-om . (– . to . ) with wemwbs . (– . to . ) cf, median (iqr) percentage difference from average no (– to ) yes (– to ) results of the pilot study nihr journals library www.journalslibrary.nihr.ac.uk table differences in baseline and follow-up characteristics by season (continued) baseline and follow- up characteristic valid number season all spring summer autumn winter at follow-up questionnaire core-om score, median (iqr) ( . – . ) . ( – . ) . ( . – . ) . ( . – . ) mean ( % ci) difference from spring a – . (– . to . ) . (– . to . ) – . (– . to . ) wemwbs score, median (iqr) ( – ) ( – ) ( – ) ( – ) mean ( % ci) difference from spring a – . (– . to . ) . (– . to . ) – . (– . to . ) temperature: average for month correlation ( % ci), at follow-up a with core-om . (– . to . ) with wemwbs – . (– . to . ) rain: percentage difference from average correlation ( % ci), at follow-up a with core-om – . (– . to . ) with wemwbs . (– . to . ) sunshine: percentage difference from average correlation ( % ci), at follow-up a with core-om – (– . to . ) with wemwbs (– . to . ) a mean difference (and % ci) and correlations ( % ci) calculated from median regression. table statistical power of outcomes outcome measure mean change in score (sd) effect size powernon-cf cf core-om score – . ( ) . ( ) . . wemwbs score . ( . ) . ( . ) . . connected to nature score . ( . ) . ( . ) . . reconviction with months unadjusted hazard ratio . ≈ . adjusted by iptw hazard ratio . . doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. as can be seen, there is insufficient power to estimate a significant difference (at the % level) between the co allocation groups in the change in scores at follow-up for the three questionnaire outcomes. for the reconviction within months outcome, we used the hazard ratio (both unadjusted and adjusted by iptw) for the risk of reconviction in the cf group compared with the other co allocation along with the number of respondents to each to, again, estimate the power. here we see that we have sufficient respondents (n = ) to estimate the unadjusted differences in reconviction risk between the two groups (i.e. power > . ), but not the adjusted differences in reconviction risk. although these calculations indicate that we do not have the number of respondents required to estimate significant differences, they do not take into account that there may not be differences in these outcomes between the co allocation groups in the first place. the other major statistical consideration is the adjustment for the decision to allocate to a cf rather than other cos and other differences between these two groups. a variety of methods have been suggested for this adjustment, including propensity scores. four methods have been outlined in the statistical literature for how to use propensity scores: covariate adjustment, stratification or subclassification, propensity score-matching and the iptw. we have used iptw as it has been found that, even in small study samples, propensity score-matching and the iptw can yield correct estimations of treatment effect (in this study the effect of cfs). however, this recommendation applies if only true confounders are included and those variables related only to the outcome and not the exposure are not included in the propensity score model, which we followed when developing the logistic model to predict the propensity scores. consideration is also required in regard to the number of variables included in the models used to produce the propensity weights. the recommended sample size is between and service users or – cases for each variable included. therefore, we had adequate power to use propensity score models in this context, that is, service users with five variables. there is a continuing debate as to which variables should be included in the models to estimate the propensity weights. results from simulation experiments suggest that variables related to outcome but not to treatment should always be included because they decrease the variance of estimates without increasing bias, that is, overfitting is a positive aspect of these models. as part of this process, the diagnostics of the iptw are important to determine whether or not conditioning on the estimated propensity score has removed observed systematic differences between cf and other co allocation groups, which we followed as recommended for iptws. however, the possibility of residual confounding remains because of unmeasured variables that are associated either with co allocation decisions or with reconviction rates. although we included variables that cover the spectrum of characteristics, unmeasured confounders may include service user preferences and compliance with cos. summary taking into consideration the statistical methods employed, this analysis was able to illustrate the feasibility of comparing outcomes between co allocation groups with robust and valid adjustment for factors that drive the decision of co allocation. the use of propensity scores provides a viable method for comparison despite differences in participant characteristics at cfs and comparator sites. these methods are becoming more common, particularly in the evaluation of complex interventions in which it is not, as in probation, possible to randomise. as discussed in chapter and highlighted from these results, retention for follow-up was problematic. however, using reconviction data linked from police data without the need to directly follow-up subjects was shown to be a robust outcome with the appropriate adjustment. the weights used in the adjustment results of the pilot study nihr journals library www.journalslibrary.nihr.ac.uk were calculated based on relatively few variables (the largest being ogrs score), highlighting that the data required to adjust appropriately for differences between co allocation and sites are not extensive. furthermore, the methods for adjustment for co decision can also be employed to adjust for those lost to follow-up and so could be employed in future studies with a primary outcome of reconviction based on linked records. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. chapter economic evaluation despite the widespread use of cfs in europe, studies that evaluate the economic impact of cfs arescarce. nevertheless, evaluating the economic impact as well as the value for money of this kind of public health intervention is key to policy-makers and robust economic analyses would provide them with elements to make decisions regarding resource allocation in the future. the health economics component in this project was twofold: to review the evidence to guide any type of economic evaluation (cost–benefit, cost-effectiveness and cost–utility), and to collect and use data from the pilot study to understand the feasibility of conducting an economic evaluation in a future study. this chapter therefore compiles the evidence from the literature on ( ) the economic evaluation of cfs as an intervention for vulnerable people, especially probation service users, ( ) the use of hrqol measures to evaluate their effectiveness and, finally, ( ) the evaluation of the cost of crime. in this report, we have summarised the evidence of the three reviews for space restrictions; however, full reviews are available on request to the health economics lead. second, it calculates the cost related to the social and health care use data and the calculation of utility at baseline and follow-up as collected as part of the pilot study. economic evaluation of care farms: a review of the evidence introduction and aims the aim of this review was to examine the methods used in the economic evaluation of cf or related community interventions for prisoners. methods search strategy a systematic search strategy was conducted in december in the following databases: embase, health management and information consortium, medline, medline in-process & other non-indexed citations, psycinfo (all via ovid); assia, national criminal justice reference service abstracts, sociological abstracts, social services abstracts (all via proquest); cinahl, criminal justice abstracts (all via ebscohost); the campbell library; the nhs economic evaluation database (the cochrane library via wiley online library); repec ideas; and conference proceedings citation indexes – science, social science and humanities (via the web of science, thomson reuters). inclusion criteria studies were selected based on whether or not they contained quantitative economic data, such as a cost-effectiveness analysis, cost–benefit analysis, cost–utility analysis and cost-savings analysis of cfs or related community interventions for prisoners. studies were excluded if the intervention setting was not in the community or if the study was not in a developed country, lacked quantitative data or focused primarily on juvenile offenders or was a review or guideline. data collection and analysis search results were screened by a researcher, and a second reviewer was consulted if the decision to include or exclude a study was not obvious. full-text copies were retrieved and data extracted using a standardised form. the quality of the economic evaluations was assessed using the consolidated health economic evaluation reporting standards (cheers) checklist. the findings were discussed narratively. results the literature search identified articles and, after duplicates were removed, titles and abstracts were screened. full-text copies of potentially relevant studies were assessed for eligibility, of which papers were included in this review. three papers specifically evaluated cfs as an intervention for doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. probation service users , , and seven other papers evaluated other types of interventions for probation service users in the community setting. summary of the evidence the literature review showed that current available evidence on the economic evaluation of cfs is scarce; most cost analyses are rudimentary and based only on estimated cost savings. there is no study using a cost-effectiveness analysis. most studies did not consider all relevant costs in the analysis. for instance, some authors considered only the costs to the criminal justice system and did not include any costs to society. on the other hand, others conducted sensitivity analyses by first using costs to the criminal justice system and then adding direct and indirect societal costs to address uncertainty surrounding their analysis. moreover, as a result of data unavailability and restrictions in measuring some offence types, often the estimated cost of reoffending was underestimated. furthermore, on several occasions, the authors omitted the cost year, discounting of the costs or adjustments for inflation. this is problematic, as it is uncertain whether or not all of the costs included in the analysis were from the same year. only one paper presented a cost analysis of cfs and it found that there were possible savings after probation service users participated in the cf programme; however, only two participants were included. apart from this cost analysis, two other scoping studies of cfs from the uk and the netherlands collected data on the average cost of a cf, per service user, per day. regarding other similar interventions, we found one cost–benefit analysis that evaluated a ‘circle of support’ intervention for probation service users. owing to the heterogeneity in the collected data, it was difficult to directly compare the results of these interventions. we were particularly interested in collecting information on the specific cost types the authors considered when costing the intervention. the following costs were frequently included in the different analyses: cost of treatment, staff training costs, transportation costs, staff salaries, cost of monitoring probation service users, staff and probation service user recruitment costs, telephone costs, premises costs and cost of equipment. furthermore, several studies also calculated the cost of reoffending, cost of offences to the criminal justice system, money paid by probation service users as fees for enrolling in a particular programme and cost of court appearances. the impact of care farms on health-related quality of life: a systematic review introduction and aims this scoping review was conducted prior to the campbell review (see chapter ) and identified any existing literature on the impact of cfs and similar interventions using hrqol measures in adult populations. the main objective was to focus on hrqol measures that could be used for a cost-effectiveness or cost–utility analysis. hrqol is increasingly used as an outcome to measure effectiveness in both medical and social interventions. methods search strategy the search strategy was based on the search concepts ‘green care’ and ‘quality of life’ (see appendix ). inclusion criteria studies that met the following criteria were included: rcts, cluster rcts, non-randomised studies (provided that baseline characteristics were comparable), adult participants, and cfs or green care. any comparison group was considered, that is, no intervention, care as usual or alternative intervention. studies that measured hrqol using any validated measures were considered. economic evaluation nihr journals library www.journalslibrary.nihr.ac.uk data collection and analysis titles and abstracts were screened by a researcher, and a second reviewer was consulted if the decision to include or exclude a study was not obvious. full-text copies were retrieved and data were extracted using a standardised form. the detailed process of study selection was presented in a prisma flow diagram. to assess reliability and validity of rcts, we used the cochrane six-item risk-of-bias checklist. studies were rated as being at a high risk, low risk or unclear risk of bias. for all other non-rcts, the suggested risk-of-bias criteria for epoc reviews was used. the findings were discussed narratively. results the literature search identified potentially relevant studies. after the removal of duplicates, titles and abstracts were screened, of which studies were excluded. eleven possibly relevant studies were retrieved for full-text assessment. after full-text review, five studies were included in the analysis. a flow diagram can be found in figure . summary of the evidence four hundred and eighty-four participants were included in this review. all included studies delivered different types of green-care interventions, such as cfs, animal-assisted therapy or horticultural therapy, or a combination of these. only two studies were conducted in a farm setting. most studies had small sample sizes and, therefore, may have been insufficiently powered to detect an effect. one of the most important findings from this review was the paucity of research that evaluated the impact of cfs using hrqol. we found no studies that included any direct measure of utility. instead, two studies used the short form questionnaire- items instrument, which could be used to generate utility via short form questionnaire- dimensions. records identification through database searching (n = ) id e n ti fi c a ti o n s c re e n in g e li g ib il it y in c lu d e d records after duplicates removed (n = ) full-text articles assessed for eligibility (n = ) studies included in quantitative synthesis (n = ) records screened (n = ) full-text articles excluded, with reasons (n = ) • conference article, no full text available, n = • not appropriate study design, n = • not an appropriate intervention, n = • did not measure quality of life outcome, n = records excluded (n = ) figure flow diagram of excluded and included studies in hrqol review. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. cost of crime: a systematic review the material in this section has been reprinted from the journal of criminal justice, volume , wickramasekera n, wright j, elsey h, murray j, tubeuf s, cost of crime: a systematic review, pp. – , copyright ( ), with permission from elsevier. this review was published during the duration of the project; please refer to wright et al. for details. aims and objective this review aimed to systematically search the literature to identify all published studies that estimated the cost of crime imposed by adult offenders. we defined cost of crime as ‘all costs that would not exist in the absence of illegal behaviour’. methods search strategy in december we searched the following databases: embase, health management and information consortium, medline, medline in-process & other non-indexed citations, psycinfo (all via ovid); assia, national criminal justice reference service abstracts, sociological abstracts, social services abstracts (all proquest); cinahl, criminal justice abstracts (all ebscohost); the campbell library; nhs economic evaluation database (the cochrane library, wiley online library); repec ideas; and conference proceedings citation indexes – science, social science and humanities (web of science, thomson reuters). searches were designed to identify studies of the health and societal costs of offending by combining the search concept ‘offending’ with the concepts ‘health costs’ or ‘societal costs’. in addition, grey literature was sought by scanning the uk government website (www.gov.uk, accessed december ) and by screening bibliographies of included studies or literature reviews (see appendix ). inclusion criteria we considered studies that quantified the cost of crime and excluded studies that reported qualitative data, literature reviews, policy papers, studies that only discussed methodology of costing crime, economic evaluations of crime prevention interventions and studies that reported only costs for juvenile offenders, as the focus of our review was to assess costs imposed by adult offenders. data collection and analysis titles and abstracts were screened by a researcher, and a second reviewer was consulted if the decision to include or exclude a study was not obvious. as studies varied considerably when estimating the cost of crime, results were synthesised descriptively and presented according to crime category. results the literature search yielded potentially relevant studies. after removal of duplicates, were identified for screening. in addition, twelve studies were identified through hand-searching of references and in total titles and abstracts were screened. during full-text review, studies were included in the analysis. – a prisma chart describing the inclusion and exclusion processes can be found in figure . summary of the evidence overall, studies reported estimates of the costs of crime, of which estimated the cost of crime to society and victims, six focused only on the cost of crime to victims and one study measured the costs to society of career offenders. the findings show that the total costs of crime varied considerably between studies. furthermore, each offence category also provided substantially different cost estimates. this was reflected in the large standard deviations estimated for each category with the exception of serious traffic offence, criminal damage and fraud. in addition, homicide ranked as the offence that was most costly, followed by drug offence, fraud, sexual assault, assault and serious traffic offence, all of which account for more than % of the total cost of crime. crime categories that involved violence to a person, such as homicide, assault and sexual assault, were all associated with higher intangible costs. economic evaluation nihr journals library www.journalslibrary.nihr.ac.uk http://www.nationalarchives.gov.uk/doc/open-government-licence/version/ / there are several possible reasons that could explain the variations in the cost estimates. the dispersion may be due to the differences in the year when the study was conducted, inflation, changes in unit costs, under-reporting of crime or changes in crime trends. in addition, officially recorded crime statistics may underestimate the actual incidence of crime because victims have under-reported incidents of crime or police have not recorded a reported crime. as a result, studies that calculated costs based only on recorded crimes provided a conservative estimate of the total cost of crime. to address this problem, authors used multipliers to calculate the actual crime rate. multipliers were calculated by computing the ratio of the actual estimated number of crimes to the number of crimes recorded. however, owing to lack of data availability, some authors also used proxy multipliers from different studies. the lack of a standardised approach to measure cost of crime was also problematic. when calculating the total cost of crime it was clear that the types of offences that were considered by authors were not the same, and the exclusion of some crime categories in the overall cost calculations could therefore underestimate the overall cost of crime. inconsistency in the definitions of crime categories was also observed; some authors aggregated two similar crime categories, such as criminal damage and arson, whereas others disaggregated crime categories and presented cost estimates, for example for sexual assault and rape, separately. the inconsistency in the definitions is problematic, as it can increase the variability in the cost estimates when comparing studies in the review and interpreting the findings. id e n ti fi c a ti o n s c re e n in g e li g ib il it y in c lu d e d records identification through database searching (n = ) additional records identified through other sources (n = ) records after duplicates removed (n = ) full-text articles assessed for eligibility (n = ) studies included in quantitative synthesis (n = ) records screened (n = ) full-text articles excluded, with reasons (n = ) • reviews/cba/cea of prevention interventions in prisons and community, n = • focused on juveniles, n = • did not include any cost figures, n = • qualitative studies, n = • unrelated, n = • conference abstract, no further information, n = records excluded (n = ) figure flow diagram of excluded and included studies cost of crime review. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. although direct costs were relatively straightforward to calculate, intangible costs such as fear, pain and suffering required a more intricate approach. diverse methods were used for this purpose, such as the jury awards approach, the willingness-to-pay approach and the qaly approach. these different methods introduced considerable heterogeneity to the estimated results. to the best of our knowledge this was the first systematic review conducted to estimate the cost of crime; consequently, we were able to assess similarities and differences of the methodologies used to estimate the cost of crime. analysis of key parameters for a future cost-effectiveness analysis introduction the health economics analysis was designed to identify the feasibility of conducting an economic evaluation of cfs in comparison with other co settings by ( ) improving the health and well-being of offenders over months and in ( ) reducing reconviction rates over months. as identified in chapter , this pilot study was not designed to detect a significant difference in quality of life or reconvictions, particularly with adjustment for important confounders. in the light of this, we do not present the results of the cost-effectiveness analysis here, but instead discuss the feasibility of conducting this analysis in a larger follow-up study. methods perspective we designed our analysis of the cost-effectiveness of cfs as a co from the perspective of the health and social care. this includes costs incurred in the provision of the intervention, as well as health-care resource and social service utilisation, as reported by users as part of the pilot study follow-up. all costs were adjusted to prices using the campbell and cochrane economics methods group, evidence for policy and practice information centre (eppi-centre) cost converter (version . ) (https://eppi.ioe.ac.uk/ costconversion, accessed june ). the analysis would be within the study period ( months) and, therefore, discounting for future cost and health outcome would not be necessary. the currency was uk pounds sterling. quality of life in line with the national institute for health and care excellence reference case, the primary outcome for a cost-effectiveness analysis would be qalys. in the pilot study, users’ hrqol was assessed using the core-om, and was assessed at baseline and at the -month follow-up. the core-om is a self-reported questionnaire that is commonly used to measure psychological distress in evaluations of mental health interventions. a preference-based measure, core- d, was developed from the core-om combining a number of answers to the core-om into a utility using an algorithm developed by mavranezouli et al. these utilities represent users’ overall quality of life and are multiplied by the time spent in each state to generate qalys. the average numbers of qalys between adjacent time points are calculated to generate smoothed estimates between those time points. qalys represent a quality-weighted survival value in which qaly is the equivalent of year of full health. resource use and valuation the total cost of each arm of the study was calculated combining the reported resource usage at follow-up and unit cost data along with the intervention cost. the health and social care resource usage data were collected as part of a questionnaire that was conducted with all participants in centres , and at the same time points: baseline and months. the recall period was the past month for both questionnaires. the questionnaires included number of health services visits [e.g. general practitioner (gp), practice nurse, physiotherapist, occupational therapist, economic evaluation nihr journals library www.journalslibrary.nihr.ac.uk https://eppi.ioe.ac.uk/costconversion https://eppi.ioe.ac.uk/costconversion psychiatrist, mental health counsellor, drug and alcohol worker, family planning service, health trainer] and number of social services visits (e.g. social worker, helpline, family support of self-help groups). service users also reported any use of hospital services including outpatient and inpatient and medication use. as our study duration was months’ follow-up, we generated an average health-care resource use using both collection points and multiplied this average by six to estimate the average level of health-care use per offender over months. resource usage figures were then converted into costs using unit cost figures from the personal social services research unit (pssru)’s unit costs of health and social care . unit costs for medications were obtained from the british national formulary. probation service users reported details for medications that were taken. the total medication costs were then calculated using the average cost per dose for each product. tables and present a summary of health-care use and medication data collected, along with associated unit costs. the intervention cost was based on interviews with the business manager who had responsibility for interventions (including cp). neither of the sites (cfs or comparator) were contacted to get full details of the activities and the costs of running these. data on the intervention and comparator site cost were collected from only one centre (centre ) in the study. accessing cost data from the probation service at a time when it was tendering for new crc contracts was particularly challenging. collecting comparator and table unit cost of health services and social services resource unit cost (£, – ) source gp pssru’s unit costs of health and social care , p. practice or district nurse nhs reference costs to physiotherapist pssru’s unit costs of health and social care , p. occupational therapist pssru’s unit costs of health and social care , p. psychiatrist pssru’s unit costs of health and social care , p. mental health counsellor pssru’s unit costs of health and social care , p. drug and alcohol worker pssru’s unit costs of health and social care , p. family planning service pssru’s unit costs of health and social care , p. health trainer nhs reference costs to social worker pssru’s unit costs of health and social care , p. helpline nhs direct cost in , £ , adjusted for inflation a family or patient support or self-help groups pssru’s unit costs of health and social care , p. any other social services pssru’s unit costs of health and social care , p. dentist nhs reference costs to support worker pssru’s unit costs of health and social care , p. hospital inpatient stay nhs reference costs to hospital outpatient clinic pssru’s unit costs of health and social care , p. hospital accident and emergency department nhs reference costs to radiography pet-neck study a www.telegraph.co.uk/news/health/ /every-call-to-nhs-direct-costs- .html (accessed june ). doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. http://www.telegraph.co.uk/news/health/ /every-call-to-nhs-direct-costs- .html table medications drug name package size package cost (£) description source amiloride . -mg tablets bnf amitriptyline . -mg, -mg or -mg tablets bnf amoxicillin . -mg or -mg capsules emit aspirin . -mg tablets bnf atorvastatin . -mg tablets emit bisoprolol . -mg tablets bnf buspirone . -mg tablets bnf candesartan . -mg, -mg, -mg or -mg tablets emit celecoxib (celebrex®, pfizer ltd, tadworth, uk) . -mg capsules bnf citalopram . -mg, -mg, -mg or -mg tablets bnf co-codamol . -mg to -mg tablets or -mg to -mg tablets emit codeine . -mg tablets emit cyanocobalamin . -µg tablets bnf diazepam . -mg, -mg or -mg tablets emit diclofenac sodium . -mg or -mg tablets bnf ferrous sulfate (ferrograd®, teofarma, pavia, italy) . -mg tablet bnf finasteride (propecia®, merck sharp & dohme ltd, hoddesdon, uk) . -mg tablet bnf fluoxetine . -mg or -mg capsules emit fluoxetine (prozac®, eli lilly and company ltd, basingstoke, uk) . -mg capsules bnf fluticasone propionate (seretide, glaxosmithkline uk ltd, london, uk) . -µg inhaler bnf folic acid . -µg tablets emit furosemide . -mg, -mg or -mg tablets bnf hydroxyzine hydrochloride (atarax®, alliance pharmaceuticals ltd, chippenham, uk) . -mg tablets bnf hyoscine butylbromide (buscopan®, boehringer ingelheim ltd, bracknell, uk) . -mg tablets bnf hypromellose [artelac®, bausch & lomb (uk) ltd, kingston upon thames, uk] . -ml bottle bnf insulin detemir . -ml injection bnf lansoprazole . -mg capsules bnf mesalazine (pentasa®, ferring pharmaceuticals ltd, west drayton, uk) . -mg tablets bnf metformin . -mg tablets bnf methadone . -mg tablets bnf mirtazapine . -mg tablets bnf economic evaluation nihr journals library www.journalslibrary.nihr.ac.uk cf costs at only one site was a pragmatic response. we estimated the costs incurred in the provision of the cos and collected from sites the number of hours in each setting in which probation service users were supervised. the number of supervised hours over the study year is reported in table . the number of hours was then multiplied by the estimated hourly rate. in cfs, the hourly rate was reported by the probation services to be £ . ; however, it was reported as £ . in the comparator settings. we also collected travel expenses, although offenders had to meet the first £ . of their travel costs. the business manager informed us that the probation trusts reimburse the difference to the service user upon production of a bus ticket via petty cash, and this was estimated to equal an average of £ per reporting occasion. the cf site reported occasions, although the comparator site reported occasions. the total annual cost per site was £ , in the comparator site and £ , in the cf site; the comparator co was, therefore, £ , more expensive than the cf. missing data the mean total costs per patient from a health and social perspective was calculated adding the cost of inpatient stay, outpatient visit, consultations, medication and intervention costs for all service users for whom response data were available. respondents who failed to complete individual items of the core-om table medications (continued) drug name package size package cost (£) description source morphine sulphate . -mg/ml, -mg/ml, -mg/ml or -mg/ml injection emit naproxen . -mg tablets bnf olanzapine . -mg tablets bnf omeprazole . -mg capsules bnf paracetamol . -mg tablets emit paroxetine . -mg or -mg tablets bnf propranolol . -mg, -mg or -mg tablets emit quetiapine . -mg tablets bnf quetiapine (seroquel, astrazeneca uk ltd, luton, uk) . -mg tablets bnf ramipril . -mg capsules bnf salbutamol (salamol®, teva uk ltd, castleford) . -µg inhaler bnf salbutamol (ventolin, glaxosmithkline uk ltd, london, uk) . -µg bnf sertraline . -mg or -mg tablets bnf sitagliptin (januvia®, merck sharp & dohme ltd, hoddesdon, uk) . -mg, -mg or -mg tablets bnf temazepam . -mg tablets bnf thiamine . -mg or -mg tablets bnf tramadol . -mg capsules bnf zopiclone . . -mg tablets bnf bnf, british national formulary; emit, electronic market information tool. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. at baseline could not be allocated a utility index score and, therefore, would be excluded from the analysis. this was the case for . % of the sample, and the complete-case data set consisted of probation service users in the cf arm and probation service users in the control arm. results quality of life table details the core- d scores at baseline and months. the index score is between and , for which represents a health status of death and represents full health. in line with the results on the core-om score in the statistical analysis, the core- d index scores showed improvements in quality of life from baseline to the -month follow-up point in both groups. it appeared that the increase between the two time points was larger for users in the comparator arm than in the cf arm. although cf users had marginally higher utility at baseline, the reverse was observed at the -month follow-up; in both cases, there were no significant differences between the core- d scores at baseline or follow-up for the two study arms. table mean core- d index score at baseline and -month follow-up by study arm parameter study arm difference p-value of t-testco (n = ) cf (n = ) baseline mean (sd) . ( . ) . ( . ) median (minimum, maximum) . ( . , . ) . ( . , . ) . months – complete case mean (sd) . ( . ) . ( . ) median (minimum, maximum) . ( . , . ) . ( . , . ) . table reported supervised user hours per study arm service users (month) supervised hours cf comparator co location april may june july august september october november december january february march total (hours) , , economic evaluation nihr journals library www.journalslibrary.nihr.ac.uk health-care resource usage resource use was broadly comparable between the two arms (table ). probation service users were frequent users of drug and alcohol workers and mental health counsellors in the past month. although no probation service users in the cf arm reported any visit to a nurse, four probation service users reported a visit in the control arm. the number of visits to the gp was slightly higher in the control arm. costs the total health and social service resource use costs in the past month, averaged over the two collection points, were, respectively, £ for users in the comparator group and £ . for cf users, which was significantly different at the % level (table ). total medication costs were marginally higher in the cf sample (£ . vs. £ . ); however, the difference was not significant. when including the cost of the intervention in the mean total cost of health-care resource use, the total costs over the last month were marginally higher in the control arm (£ . vs. £ . ). table health services and social services usage in the past month health or social service resource use of the service number of visits co, n (%) cf, n (%) co, n (sd) cf, n (sd) gp ( . ) ( . ) . ( . ) ( ) p-value of t-test . . practice or district nurse ( . ) ( ) . ( . ) n/a p-value of t-test . n/a physiotherapist ( . ) ( . ) ( ) (–) p-value of t-test . n/a psychiatrist ( . ) ( . ) – – p-value of t-test . – mental health counsellor ( . ) ( . ) . ( . ) (–) p-value of t-test . n/a drug and alcohol worker ( . ) ( . ) . ( . ) (–) p-value of t-test . n/a health trainer ( . ) ( ) (–) – p-value of t-test . n/a social worker ( . ) ( . ) (–) – p-value of t-test . n/a support or self-help groups ( . ) ( ) (–) n/a p-value of t-test n/a n/a other social services ( ) ( . ) – ( . ) p-value of t-test . n/a n/a, not applicable. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. summary the health economics component of this project aimed to ( ) conduct a review of published and grey literature evaluating the impacts of cos and costs of offending to society and health services and ( ) identify the most appropriate ways to collect cost data, including health-care resource use by probation service users, cost of reoffending, costs of crime and gains of employability of probation service users in cfs and comparator co settings and explore the feasibility of measuring cost–utility. the first review objective was completed with three useful reviews. the review of the economic evaluation of cfs concluded that most cost analyses were rudimentary and, based on only estimated cost savings, there was no study using a cost-effectiveness analysis. the second review on the impact of cfs or green care on hrqol measures showed the paucity of research that used utility and preference-based instruments to measure benefits, despite the fact that hrqol is increasingly used as an outcome to measure effectiveness in both medical and social interventions. finally, the third review of the cost of crime was substantial and gathered evidence on cost of crime that could be easily integrated in a future decision-analysis model evaluating interventions in crime area. regarding the second objective, we were able to collect health-care resource used by probation service users in self-reported questionnaires completed at baseline and at the -month follow-up; we also surveyed and summarised costs of crime via the third literature review. we found that the core-om is a suitable outcome measure to generate utilities for probation service users undertaking cos. we found that only . % of the participants requested help or clarification from the ra. the results indicate a large number of missing data at baseline; however, this was mainly attributable to human error as the questionnaire package was missing two pages of the core-om. at follow-up, the number of true missing data were small. although it is possible that the participants found the questionnaire suitable, several items stood out as being particularly challenging for some participants. the participants requested help from the ra to seek clarification of words, such as overwhelming, warmth and affection, and optimistic. this suggests that if the core-om is administered, it is better to employ a ra so that the participant can ask for any clarifications, which will reduce the rate of missing values. using the core- d we were able to generate utilities from which qalys could be generated to undertake a cost–utility analysis. table average costs of resources used within the past months by study arm parameter study arm difference p-value of t-testco (n = ) cf (n = ) health and social services usage costs (£) mean (sd) . ( . ) . ( . ) median (minimum, maximum) . ( , ) . ( , . ) . * total medication costs (£) mean (sd) . ( . ) . ( . ) median (minimum, maximum) . ( , . ) . ( , . ) . total costs a (£) mean (sd) . ( . ) . ( . ) median (minimum, maximum) . ( . , . ) . ( . , . ) . *p < . . a the costs include the cost of the intervention. economic evaluation nihr journals library www.journalslibrary.nihr.ac.uk the total annual cost per site was estimated to be £ , in the cf and £ , in the comparator site. a limit to the costing of the intervention we faced in the study is that, although we were able to appropriately cost cfs as an intervention from the perspective of the probation trust, the cost of the comparator intervention was based on only one type of co within centre and we had to assume that all other cos would cost the same amount to implement. it is likely that this assumption may be inappropriate and some cos may be cheaper or more expensive. considering the small complete-case data set (n = ), it is likely that the exploratory cost–utility analysis would lead to incremental cost-effectiveness ratios with a high level of uncertainty and it would therefore be difficult to generalise the results of this study. an interesting complementary analysis would be a cost-effectiveness analysis using reconviction rates as the outcome of benefit; the sample for this secondary analysis would be larger than the study sample using qalys as reconviction rates are available for participants (vs. only participants for qalys). however, we collected health and social services usage costs over only the baseline and -month time points and we would have to assume that probation service users pursue the same use of health and social care over consecutive months. furthermore, if the type of reoffence had been collected we could have used the results of the systematic cost review to extrapolate the incremental costs of reconviction in the analysis and construct a full decision-analysis model. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. chapter the qualitative study introduction as outlined in chapter , objective , we aimed to develop a logic model based on the experiences of probation service users of serving their co at a cf. in chapter , we reported the findings from our systematic literature review, in which we developed a theoretically based logic model to explain the mechanisms for how care farming might work for different groups of vulnerable people. briefly, the development of the logic model involved identifying theoretical concepts as a basis for the model and exploring the qualitative literature to unearth the potential intervention components, mechanisms and process outcomes that were of importance to the various groups. the plan for this part of the pilot study was to conduct in-depth interviews with probation service users and six with cf staff to further contribute to the development the logic model. however, we took the decision to refocus our qualitative work to explore the relationship between probation services and cfs in depth. one of our early observations during the study was the different approaches taken by the three probation services in their approach to the use of cfs for service users on cos. two services had positioned cfs within cp requirements (centres and ) and the third placed the cf as a sa rehabilitation requirement (centre ). cp is regarded as primarily punitive and is offered to those with limited or no identified rehabilitative needs. punitive cp orders can include activities such as litter picking, park maintenance and warehouse work. in contrast, sa requirements aim to rehabilitate service users with an identified need to reduce the risk of reoffending. given the therapeutic aims of care farming to use agricultural and farming practices to support vulnerable groups, its approach is more closely aligned to the rehabilitation rather than the punishment of probation service users. we wanted to understand, therefore, if, and how, care farming could support probation service user rehabilitation if it was viewed by probation as part of a punitive order. we considered that exploring this in more depth would be of value to probation services and also to care farming. we therefore aimed to conduct a qualitative study to understand the role of care farming in cos. methods in the light of the changed focus of this qualitative study, we addressed the following specific objectives: . to understand the extent to which probation services in other regions in england utilise cfs . to understand the perspective of probation service users on serving their co on a cf . to explore, from the perspective of the probation services, the use of cfs within cos, including the allocation process . to explore, from the perspective of care farmers, the relationship of the care farmer with probation services and their experiences of supporting probation service users on their farms. identification and recruitment care farms working with probation to meet our first objective, which was to understand the extent to which probation services in england utilise cfs, we approached care farming uk, which provided us with a list of cfs that had indicated in a previous survey that they worked with probation services. twenty-nine farms were subsequently contacted. only one of the farms reported providing support for probation service users. in addition, we located another farm that was not listed with care farming uk that had been part of a study involving probation service users and had been included in the literature review (see chapter ). doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. service users neither of the two farms identified outside our study sites were able to offer us access to recruit probation service users. one farm only received a few ad hoc service users and had none at the time of our study. the other farm took service users in batches and had only one ex-probation service user at the time of our study. they were unsure if they would receive any more probation service users in the future, as a result of the privatisation and restructuring of probation services. therefore, we only recruited service users in our existing three cf sites. we planned to purposefully sample service users to explore differences by gender, age range, employment status and responses to the quantitative questionnaires (see chapter , outcomes for a list of outcomes). however, the closure of one farm (just as we were organising the interviews), the limited access to service users at the second farm, along with low recruitment rates and a reliance on probation supervisors to select service users, forced us to use a convenience sample. the sample therefore included any service user attending one of our three cfs as part of a co. we identified and recruited service users using a number of approaches. as centre was in the process of closing and having all service users removed, only one ex-probation service user could be approached. he had served his co at the farm and then continued to work on the farm as a volunteer. we attempted to follow-up, by mobile phone, all of those who had been reallocated to other co projects. we rang and then followed up with one text message that included a link to a short youtube video (youtube, llc, san bruno, ca, usa) describing our study. of the five service users that were approached, three declined to participate or failed to respond to a telephone call. one service user who initially agreed to take part failed to attend for the interview. only one other service user responded. unfortunately, he had spent a limited amount of time at the farm before being moved so his contribution to the discussions about the cf were somewhat limited. at centre a group of service users was approached at the farm in the presence of a cp supervisor. the meeting had been planned in advance and approved by all relevant parties. after providing an initial overview of the study and inviting anyone within the group to attend, the cp supervisor took the group away to have a discussion in private and returned to the researcher stating that all the probation service users had declined. we decided to review our approach and months later a different cp supervisor arranged interviews with six service users who were attending for supervision appointments. these interviews were conducted over day for the convenience of the service users and the researcher. unfortunately, two of the interviewees had been placed in the kitchens at the cf. as they had not undertaken any farm work they were ineligible for the study. in centre , the seconded ra, based within the probation service, liaised with probation service user managers to arrange an interview that coincided with a supervision appointment. all service users were given a £ high-street voucher as a thank you for taking part. this was agreed with the probation service. care farmers and probation staff the research team had been in regular face-to-face contact with the care farmer at centre ; therefore, he was approached directly. at centre , as there was no designated farmer, we interviewed the manager of the overall setting (a religious movement) and the farm volunteer who acted as liaison point between probation and the religious movement. the care farmer at centre did not respond to our requests to be interviewed. two further farmers and one of the farmers’ wives who had been identified while searching for other cfs also consented to be interviewed. one of these farmers worked with the same probation service as the farmer who had declined, provided care farming within the same type of requirement (a sa) and worked with a similar profile of service users. this farmer and his wife are regarded as part of centre . the qualitative study nihr journals library www.journalslibrary.nihr.ac.uk probation staff were selected on the basis that they worked directly with service users and were responsible for allocating service users to particular projects and thus had knowledge about what each project offered. topic guide we developed an interview guide based on theories of desistence , , , , – and green care. , – the green theories (relating to any nature-based approach) presented seven key elements to suggest how care farming might work (for any group). these included looking at nature, being active in nature, shaping and nurturing nature, interacting with living creatures, social interaction, worthwhile purpose and skills building. at the time of the qualitative interviews, the literature review reported in chapter had not been completed; therefore, the logic model was not available to inform the topic guides. this was instead used to guide the analysis. we tailored this to each group of participants: care farmers, service users and probation staff. the interview guides (see appendix ) included questions on what the cf aimed to achieve, the experience of being on a farm, the rehabilitation of service users, the allocation process and how care farming fitted with the aims of probation. interviewing and analysis all interviews were conducted face to face except three that were conducted over the telephone. all participants were given an information sheet and asked to sign a consent form. interviews were conducted by three researchers (jm, zr and rl) at cfs and at probation service offices. all current service users were interviewed at a probation office. although a more neutral location would have been preferred, this needed to be balanced with offering a convenient time and location to service users. only the ex-service user was interviewed at the cf. prior to the interview, we had established working relationships with four of the probation staff and three care farming staff. other than for recruitment into the quantitative study, we had no prior relationship with any of the service users. out of necessity, the service user interviews were conducted in close succession. this meant that we were not always able to read transcripts between interviews to inform any necessary modifications to the guide. we did, however, make notes during each interview to identify topics to be explored with subsequent service users. all interviews were digitally recorded and transcribed verbatim. data were stored and managed in nvivo version (qsr international, warrington, uk). we applied a mainly theoretical approach to a thematic analysis, but were open to new potential themes that were not represented by the theories. our analytic framework was based on theories of desistence and our own theoretically based logic model from the systematic review of care farming. the combination of these two theoretical stances clearly showed areas of overlap. for example, social reintegration in desistance theory was clearly represented in our logic model through the mechanisms of developing social relationships, belonging/non-judgement, and feeling valued and respected. for our analysis we (jm, he and zr) individually read a selection of transcripts and then discussed potential codes and key observations. each transcript was coded, allowing for back coding as new codes emerged. codes that were repeated across transcripts or appeared to be linked were grouped into initial themes and subthemes (see appendix ). to understand potential relationships between themes, we constructed visual maps. the themes were then reviewed against the original coded data and then against the data set as a whole to ensure that each theme represented a coherent story that fit within the aims of our study. we looked for deviant cases, comparing across centres and across types of interviewees. once the themes had developed, these were compared with the concepts identified in the logic model derived from our systematic review (see chapter ). the themes were then compared and contrasted with the descriptions for each of the intervention components and mechanisms within the ‘all-service user’ logic model. this first involved gathering the descriptions for the components and mechanisms from the all-service user logic model and transferring them to a grid. from this, we extracted any descriptions sourced from existing doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. theories and studies , pertaining to probation services users to create a new probation-specific logic model. by aligning the two models side by side, we were able to retain complete descriptions for intervention component and mechanism while it also enabled us to identify contrasting descriptions and gaps within the probation framework. we then began the process of translating the contents of the themes from the qualitative study into the existing all-service user logic model. this was an iterative process moving back and forth between the content of the themes and the logic model grid to ensure that findings representing possible intervention components and mechanism within the theme were extracted out into the developing logic model. given that the logic model aimed to explain how care farming may work at achieving health outcomes, we were looking for data that suggested an enabling process, thus findings pertaining to other outcomes, for example lack of choice, were not included in the model as they did not help to explain a mechanism to explain how cfs might work. understanding the barriers to an effective intervention are also clearly important, so these themes have been described in this chapter. once translation of the qualitative findings into the probation service user logic model was complete, we were then able to compare the emerging contents of intervention components and mechanisms with those of the all-service user logic model. as the model is only based on this limited empirical work, it has clear limitations and will require further detailing as more evidence becomes available. ethics ethics approval from the leeds school of medicine research ethics committee (reference number somrec/ / ) and permissions from noms (reference number - ) granted for the pilot study also covered the qualitative work. findings characteristics of sample we interviewed seven current service users, one ex-probation service user, six cf staff and five probation staff (table ). all the service users were male; this was expected as only two of the service users who were recruited to the quantitative pilot study and who had attended a cf were female. table details of the interviewees interviewees gender details service users centre su male aged years, ex-probation service user and previously served hours of cp at a farm su male aged years, was given hours of cp and part was spent at a farm and then reallocated to other project after farm closure (telephone interview) centre su male aged years and was given hours of cp a su male aged years and was given hours of cp a su male aged years and was given hours of cp a su male aged years and was given hours of cp a (telephone interview) centre su male aged years and was given a sa requirement involving sessions at a farm plus supervision appointments at probation offices su male aged years and was given a sa requirement involving sessions at farm plus supervision appointments at probation offices (telephone interview) the qualitative study nihr journals library www.journalslibrary.nihr.ac.uk general findings eight themes emerged from the data. these were easy environment, the farmer or supervisor, developing relationships, the animals, the work, personal growth, belief in the farm and looking back. the extent to which the findings within these themes reflects the process of probation service user rehabilitation according to both desistence and the cf theoretical logic model is described in themes. in terms of where the cfs were positioned within the cos (as punitive or rehabilitative), the evidence suggested that there were three, rather than two, working approaches. these were that the cf was: l part of a punitive cp order (centre and centre ) l part of a rehabilitative environment (centre and centre ) l a mixture of both punitive and rehabilitation (centre ). table details of the interviewees (continued) interviewees gender details care farmers centre cf male previously a mental health nurse, acted as care farmer for . years and the farm was offered as a cp requirement centre cf male manager for overall setting that included a farm, he had limited involvement in farm itself but responsible for who worked on the farm and the farm was offered as part of cp requirement cf male volunteer and retired accountant centre b cf male beef cattle farmer, he had been involved in care farming for years and the cf was provided as a sa requirement (rehabilitation) cf female farmer’s wife (of cf ), she was a qualified teacher and was involved in care farming for years centre cf male background in engineering and property management with later qualifications in child care, most of intake is for disadvantaged children, with no formal contract in place between farm and probation service and service users attending occasionally probation staff centre po male project officer for years and his role was to allocate service users to various cp projects po female probation service officer for year and her role was to allocate service users to various cp projects centre po male cp supervisor for years and his role was to allocate service users to various cp projects centre po female probation service officer for years and her role was to serve service users needs, suggest co requirements and projects and make recommendations to court prior to sentencing po male probation officer for years and his role was to serve service users’ needs, suggest co requirements and projects and make recommendations to court prior to sentencing a service users spent up to days per week at the farm. the remaining time was spent on other projects. b this farm was not part of the pilot study, but did work with the same probation service as the pilot study farm. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. interviews with probation staff regarding allocation decisions offered some explanation for how the characteristics and needs of service users were matched to the various types of cos, including cfs. some of these characteristics and needs were regarded as ‘hard’ data, being recorded on ndelius systems within probation services. factors that were specifically mentioned also contributed to the ogrs score, such as age, gender and offence committed as well as employment status, place of residence, risk of harm (to themselves and to others) and caring responsibilities. other data were more nuanced and subjective and seemed to be involved in making final decisions that could, at times, conflict with what the hard data suggested would be appropriate for a placement, for example the service user’s demeanour, their attitude to obtaining qualifications and the likelihood that the service user would complete their placement. probation staff in centre also talked about the ‘neediness’ of service users doing cp placements (as opposed to specified needs to be meet through a sa). this seemed to refer mostly to whether or not the project supervision staff at the placement would be able to cope with the service users. within centre , probation staff talked about employment needs and participants who were leading a very antisocial life as key factors in allocating service users to the cf. the probation staff suggested that those service users who perhaps were not as entrenched in their behaviours would benefit from a different venue than the cf: [t]hey will develop them [social skills] anyway with the number of people that they have to work on [cf] anyhow, but there is also kind of in the reverse of that looking at how vulnerable an individual may be, how mixing with some of the very entrenched offenders will have, the effect will have on that individual. p , centre i wouldn’t recommend [cf] for someone who just had an education training and employment need. p , centre the care farmer who also worked with the same probation service concurred that service users attending his farm had very entrenched behaviours, often with substance misuse and mental health problems. at centre , probation staff tended to talk about the capacity of various placement staff to cope with the needs and characteristics of service users. so charity shops would typically, but not exclusively, receive female service users with a low risk of reoffending whose criminal offence had not included theft. specifically, they mentioned the comparator site (that was part of the pilot study), referring to its capacity to cope with more challenging individuals. all the interviewees who contributed to the discussions about the cfs as a rehabilitation requirement (within centre ) concurred. the two cfs here provided a good fit with the theories on desistence. within centre , the experiences of service users were often neutral or negative and this was at odds with the perceptions of the care farmer or supervisor. opportunities for activities that could contribute to the process of rehabilitation were essentially provided through probation as an entirely separate activity. perhaps the least clear approach was that offered at centre , where the cf was offered as a cp punitive order, but the experiences of the care farmer and service users suggested activities and mechanisms of change that were clearly compatible with the process of desistence. at the time of the study, the farm in centre did not provide qualifications to improve employment prospects and this was regarded by all probation staff as key in the rehabilitation of service users. although plans had been made to introduce formal qualifications at the farm, there was no suggestion that the farm would move from a cp to a sa requirement once in place. the offer of a cp placement (not related to care farming) that also offered elements of rehabilitation was also evident at centre , where the concept of providing ‘that helping hand . . . that little nudge’ (po ) for younger offenders was considered important. the view here was that putting younger people (< years) into unpaid work groups could ‘often lead them further astray’ (pso ). the qualitative study nihr journals library www.journalslibrary.nihr.ac.uk themes easy environment the majority of service users expressed an appreciation for the outdoors. the service users explained that the fresh air and open space created a sense of freedom and peace, allowing them to relax, escape the hectic pressures of life and reflect on their stressful weeks: it just gives me the open spaces you know, i keep repeating that but it’s just the open fields and that, you know, you’re not confined anywhere, just free, you really feel free. su , centre it is peaceful up there as well, it’s quite relaxing, it’s just nice to get away from manic life really, it’s just hectic, all the time, hectic, hectic, hectic, and then you go up there and it’s just a little bit of peace, to get away from everything, cause it is in the middle of nowhere. su , centre in addition, service users at one farm (centre ) enjoyed being away from the public, not having to wear high-visibility jackets and working in an environment in which everyone was treated equally. however, one service user from a different farm (centre ) felt that the high-visibility jackets should be worn as a punishment and others suggested that they were a badge of honour. care farmers mirrored many of the positive expressions of the services users and, in addition, considered that the cf offered a peaceful, judgement-free environment. furthermore, this environment enabled service users to shed the personas that they had had to develop to fit with their turbulent social circumstances. in particular, farmers felt that the sense of freedom from the open space allowed service users to be more open about their problems. although service users did not discuss the presence of a persona as such, in one of the three farms (centre ) they did describe how the farmer, rather than the environment, was helping them to learn to trust again: [w]e try to look at it as though you can take a break from society, take a break from it for these few hours that you’re down here, and spend that time on yourself, look at yourself, if you want to speak to us about owt, if there’s owt worrying let us know, we’ll help you. cf , centre [i]f i walked into [name of town] with one of my offenders now, their attitude would change, because they are putting up a wall, they are putting up a defence, they do not want to be seen as a softie . . . out here they are different people altogether, i’ve seen that, i’ve seen that time and time again, they come here their shell comes off, they go back to town they put their shell back on . . . cf , centre i think that’s more likely to be the case, i think it’s the atmosphere, the ambience, the, it’s a chill-out zone, in fact that’s almost the wording that they use, this isn’t a place to lose your temper, you know, we’re relaxed, we’re happy here, why spoil it? and of course for many of this group they’ve never experienced that in their life to date, they come from obviously disturbed backgrounds or whatever, people they hang out with tend to be very aggressive in their nature, and this is so outwith their normal experience. cf , centre care farmers further felt that the open space of the outdoors and the lack of walls created the perception of a lack of barriers. this provides a sense of freedom that makes it easier for service users to open up and talk. this highlights how an easy environment could encourage the development of relationships between doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. people at the cf. the open space also gave service users room to be themselves and focus on their issues and developing themselves. one care farmer described the outdoors as a large classroom that created a learning environment that was suitable for individuals who struggled to learn in an enclosed classroom setting: [t]hat’s important part because there’s no barriers or nothing, we’re out here, and it’s just, people can’t get it in to their heads, it just, there’s no barrier, that’s it, there’s no barriers, cause there’s no walls, we’re not going to take you in to a little room and talk to you and do all these things, that’s all i, people become nervous or they clam up or we have various reactions to all that, i compare it really to going to a job interview, for a really important job and if you don’t get this job, you know, amount of nerves and things what everybody goes through, but majority only is because we’re going in to that room and they’re going to be sat behind a desk and they’re going to be judging me and they’re going to be this that and the other, it’s not about, it’s just, it’s far easier to counsel people through problems by doing sommat to start with and go outside and do it, not in a confined space. cf , centre probation staff, who were all responsible for discussing the various orders and project options with the service users, made little mention of the environment, with only one (po ) promoting the nature side of the farm with selected service users at the time of allocation. desistence theory emphasises that an environment conducive to reflection is an important early stage in the process of desistence. however, this possibility within cfs was not alluded to by probation staff. further reflection is a recognised mechanism within the care farming theoretical logic model: [s]ome of them yeah will come back and say oh i really liked working with the sheep or we did this with the sheep or whatever, but personally that wouldn’t be something i would pursue with them. po , centre the farmer or supervisor this was core to the themes of developing relationships, the ease of the environment and experiencing personal growth as part of the formation of a new identity. the majority of service users spoke highly of the cfs and probation supervisors. the service users commented that, although the probation supervisors were authority figures, they were still welcoming, easy to talk to, guiding and wanting to help. this was particularly the case at centres and , but at centre , where the authority figures were staff from probation services, there were conflicting experiences: just nice people, just, you know, they want to help, they want to help, that’s it, they want to help people, they don’t want people reoffending they’re there to, you know, obviously they’re on a salary or an hourly rate, but that’s regardless to me, i don’t care if they earn grand a year or five grand a year, obviously i’d prefer it if they earn grand a year cause they all do a good job. su , centre supervisor, it’s not [name of supervisor] so i don’t know what associations they have, i’ve never really asked them, yeah, they just tell us what to do and we do it, they supervise it or manage it or whatever you want to call it, they don’t really get involved in doing a lot of the work themselves, they just make sure the work is being done to a good standard. su , centre care farmers themselves had insight into the skills required for, and utilised in, their role, balancing supervision with support and teaching to earn respect and trust. they described how the nature/personality of care farmers and probation officers played an important role in care farming. they mentioned that the the qualitative study nihr journals library www.journalslibrary.nihr.ac.uk ideal care farmer is someone who genuinely wanted to help service users and was willing to spend the time and effort developing relationships: [s]o it’s all about the delivery, about the person and are you passionate about nature, are you passionate about farming, and if you are, you’ve got to be able, the second thing you’ve got to be is passionate about people, if you’re passionate about them both it’s easy, well not easy but it’s easier, but if you’re not passionate about this it’s probably like you doing this project, it’s like you either have passion to do it or you don’t. the passion will take you that extra mile, so yes i will say nature does work, and yes the farm does work, but you’ve got to have the right person delivering it to young, mental health, to every different part of society there is, with passion. cf , centre skilled supervision is a key component of desistance theory; however, staff in probation did not discuss this in the context of care farmers. within the context of cp requirements across the cf and comparator sites, probation staff recognised the importance of matching service users to the skills and requirements of the project supervisor (often a charity shop manager or warehouse supervisor) to ensure that orders were completed with minimal disruption. a number of probation staff were keen to ensure that they ‘did not set people up to fail’, but for some this seemed less to do with rehabilitation and more about ensuring a smooth co: [y]ou’ve got to look at the individual themselves, they might be really needy, and they’d be ideal for a placement, but you just couldn’t put that weight on a shop manager, so then you’d pair them up with a supervisor, i mean all supervisors have got strengths and weaknesses, so if you’ve got somebody really needy, got two sisters on at the moment who are really needy, we tried them in [warehouse] and [name] the manager couldn’t cope with them just because they were so needy, so we’ve now put them with a supervisor who is, that’s what he’s good at, he’ll give them time and what have you. po , centre the work a wide variety of activities were undertaken at two of the farms (centres and ). these activities required the users to acquire new skills and use existing skills to contribute to the everyday working of the farm. the service users at the other farm (centre ) provided conflicting descriptions of activities, with most users indicating that they were predominantly involved in site maintenance and not in horticulture activities or contact with animals: i’ve done welding, i’ve done fabricating, i’ve done woodwork, cooking, looking after livestock, planting, generally everything that happens on a farm really, driving some of the machinery, done some mechanics. su , centre gardening, cleaning the site up, i’ve done painting and decorating, planting all the plants, i did that car park over there. su , centre get there in a morning have a cup of tea, then we go and do the rubbish, it’s a compactor, take it down to the compactor which is a machine that compacts all the rubbish, then we go up, we do a couple of journeys with that till all the rubbish cleared. then we go and do the cardboard, put that in the cardboard skip, have another cup of tea, and then we go up and do a bit of maintenance on the tractor, and probably go and feed the cows, not groom the cows, clear the cows out, sweep the yards and that’s it really. su , centre doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. most services users discussed enjoying the work they did on the farm. one service user, at centre , explained that he felt motivated by the work, suggesting a link to personal growth, as identified in both desistance theory and our own logic model. service users at centre described how they enjoyed being able to do a variety of activities: i’m more motivated here and look forward to coming down here cause there’s always something to do and i can get on with sommat, it felt like, people like, if you started sommat there’s always sommat else to do after. su , centre i liked the woodwork, quite a lot, cause we were always building something new but, i liked the mechanical side more, because we was always, you know using the tools, driving around, and just having a bit of fun really, playing, well not playing up but having some fun like. su , centre you’re always doing sommat different, and obviously on a farm, for me as a welder it’s great cause there’s always sommat broke which i can fix, so that’s cool, but just doing different stuff. su , centre the extent of enjoyment at the other farm (centre ) was very mixed. two younger service users explained that they just wanted to complete their order and move on with their lives; these individuals did not have much connection with nature during their stay at the farm but still preferred the farm to other project types. the fact that the work was ‘unpaid’ was alluded to, re-enforcing their awareness of the order as a punishment: i was looking forward to getting it out of the way, getting it finished. i don’t mind it, but nobody likes working for nothing anyway do they? su , centre care farmers provided a more detailed insight into how the activities were planned and adapted to take account of the skills, capabilities (whether or not they were under the influence of drugs or alcohol) and expected behaviours of the service users, as well as the daily work requirements of the farm. this was partly to ensure the safety of the service users but also to provide work that was deemed worthwhile (by the service users) to maximise engagement. again, farmers used their personal skills to decide when, and how, to introduce different activities that might seem either daunting (e.g. sheep handling) or mundane but necessary, such as litter picking on-site: you can’t plan it too much, it is almost spur of the moment, but the good thing about the farm is it’s so diverse, farming skills are so wide ranged where if you just say, let’s say we were just going to do one specific activity say like fork-lift, well not fork-lift driving but driving, tractor driving, straight away if you had a course . . . these guys have got to go on a course and drive a tractor i guarantee you that out of eight of them four of them, five of them, maybe six of them wouldn’t be able to do it, because they’re not in the right frame of mind. cf , centre yeah it’s real, so if they should, it’s because fencing actually needs doing on the farm, and you know if it’s sheep handling then they get in a flock of sheep and they dip them because that’s what’s needed, so, and it’s seasonal, so they appreciate that there’s some activities available at certain time of the year, and that we feel has a big impact on the success, because when the service users come and they do the activities they know that [supervisor’s name] hasn’t just made them up that morning to keep them occupied, that they feel that they are on a working farm and the activities they’re asked to do are part of that working day, i mean obviously you have to adapt it a little bit, cause you’ve got to keep them occupied and entertained and there are some activities that you have to save for the the qualitative study nihr journals library www.journalslibrary.nihr.ac.uk end of the working day and we do ourselves because they’re dangerous, but on the whole all the activities are real, and that’s a really important ethic. cf , centre litter picking is outdoors yeah, a lot of people find litter picking degrading, it is, it is, it’s a bit like, ‘oh god do we have to pick al the rubbish up?’ i cannot stand doing it at home; putting the bins out. so when you have acres to pick all the rubbish up, but we just expect it, if we do not do this it’ll just pile up and pile up and pile up and we’ll get rats and we get this that and other. it’s just simply explaining that that has to go because it has to because it’s not clean. cf , centre probation staff based in centre considered the farm to be a ‘massively productive way to spend the day’ (po ). this referred to the work and also the therapeutic support, the thinking skills and the support with job searching. they talked about people achieving and gaining confidence and self-esteem, concepts that are closely aligned with desistence theory and the mechanisms of change within the cf logic model: [i]t provides skills, so there are practical skills in terms of whatever work they need to do there, but also kind of a bit of life skills as well in terms of how you interact with other people, you know, how you behave when you’re asked to do something and when you’re told to do something and whatever else, and i think there is a general, also the kind of confidence building things that are there, there are people that take great kind of joy really in somebody achieving something in somebody improving and certainly in somebody completing the work, there’s the kind of confidence and self-esteem stuff. po , centre the animals the theme consisted of discussions about the nature of interaction with service users and the animals. service users differed in their willingness to engage with animals but also in the extent to which they had access to them. in contrast to other service users at centre , one individual found the experience of working with the cows therapeutic and gave a sense of worth. he also described how this created an avenue for him to interact with the non-farming staff on-site who facilitated a desire to change. one other service user suggested that they were not ‘hands-on’ with the cows indicating that interaction was limited and seemed somewhat disappointed at this. a service user at another farm also described feeding and caring for livestock, explaining how this had contributed to his new qualifications. here the link between the presence of animals and personal growth through the acquisition of new skills is clear: well it’s what i said, feeding the cows and that, gives me a sense of worth and things like that, you know. su , centre [i]t’s nice to be able to, rather than seeing rats and pigeons you get to see deers and ducks, you know what i mean? su , centre we don’t get hands-on with the cows either, it’s like one of my friends outside, he’s on a project at a farm, and there one of the mums stood on the leg of the baby and he’s been wrapping the leg up and fixing the leg and next week he’s got to help the lambs give birth, so he’s proper hands-on with it all. su , centre from the perspective of care farmers, animals were considered to exert positive influences in three ways: through the acquisition of skills; by developing a sense of responsibility through the meaningful activity of caring for the animals; and by exposing fear in service users, which meant that their macho personas were shed and contributed to the creation of an easy environment on the farm. the novelty of working with doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. animals created a stimulating environment that supported engagement and the acquisition of new skills. animals were considered a calming influence that encouraged service users to look beyond their own needs and desires and perceive their work to be meaningful: [w]e’ve got things from like chinese painted quails, a baby quail is about the size of a bumble bee, and you know when i look at the faces of these people that have never seen them it’s like ‘wow, what’s that?’, i say ‘it’s a quail’, ‘blimey’, and these little things are running all over the place, you know, or then the aylesbury duck, all fluff aren’t they, i put a chick in their hand and they’re ‘wow’. cf , centre i think that, if you look at the care element side of things you are, that animal’s your responsibility in some way, when you come down, ‘oh so, right the chickens need to be cleaned out and all this’. you might get a couple of lads who’ll say ‘i’m not cleaning chickens out they stink’ and this, that and other, but at the end of the day them chickens need to be cleaned out, it’s about a responsibility to sommat else, and not just to yourself, it’s not that take, take, take; it’s about giving, you have to care for that animal, it has be looked after, it has to be protected it has to be fed, watered, all them things, and i think it’s a great way of doing it, it’s just, we can’t bring kids in and say here look after that kid, you need to look after this, so using animals that way, and the response is different again, it’s, when people are around certain animals it’s very calming, because it’s either respect for the animal that they can’t be shouting or they frighten it, but people just adhere to it. cf , centre [t]he animals are good because you’ve got these lads coming out, or young men, and even ladies, who are talking machoness, some of them from violent backgrounds, been out fighting, stuff like that, and then you put like a chicken in front of them and they’re scared of a chicken. cf , centre animals clearly provide a tangible opportunity for change, by giving something back to society and the developing new skills. these factors are identified within desistance theory as leading to positive change. probation staff in centre concurred that people enjoyed the contact with animals. this was despite interaction with animals and nature appearing to be a very limited part of their discussions with users during allocations: . . . anecdotally, lots of people like working with the animals, you know, i know it might sound like a bit of a trivial thing but particularly if someone is going there around lambing time, it’s just a kind of little bit of a feel good factor thing, so that will be by far the tiniest rehabilitative thing of all the examples i’ve just given you. p , centre developing relationships this theme revealed contrasting experiences, particularly between the younger (aged < years old) and the older (aged ≥ years) service users. although only a few interviews (three) were conducted with service users in the < -year age group, the reflections from care farmers during their interviews have also helped to deepen this theme. positive relationships, although not necessarily friendships, developed between care farmers and the older services users. however, among the younger service users there was unwillingness to make meaningful relationships with other service users and they did not discuss any relationships with care farmers. one in particular described how he felt it would be beneficial to avoid making friends with other service users because they had committed a criminal offence: well cause he’s the team leader isn’t he, he’s in charge of us, what he says goes isn’t it really? but he’s not like that, he’s like one of us you know. su , centre the qualitative study nihr journals library www.journalslibrary.nihr.ac.uk yeah the staff were welcoming, they’re like easy to get on with, and they listen to you, if you’ve got a problem they’ll talk to you about it, like i was, i had a bit of anxiety, not due down to this place, it was sommat to do with outside, and i spoke to [care farmer] about it and he come and he says ‘what’s up?’ and i actually felt a lot better after i’d spoke to him cause, it’s like he helped me with it, he said all you have to do is talk to somebody, i got talking to him and i felt a lot better after. su , centre i don’t really want to make friends, i get on with everyone, i don’t really want to make friends on the course, because they’re all on the course for the wrong reason, and it’s just trouble isn’t it, it’s trouble you don’t know . . . you just keep to yourself, i stick with my brother a little bit, but just keep myself to myself cause i don’t want to get involved with the wrong crowd again, and that’s just an easy way, they’re at community service, they might not have changed around, they might still be doing naughty stuff, and you get back in with them then you start getting arrested again. su , centre interviewer: ok, development of friendships in there? su : no, not really, i mean i say hi to everyone i’m not rude to anyone or anything, they’re not rude to anyone else, everyone just is on the same playing field when you’re there, so yeah. centre care farmers on the other hand were much more positive about social interactions on the farms. they considered that the work on the farm created the opportunity for people develop relationships and that the non-judgemental atmosphere and nature of the care farmers encouraged the development of relationships between service users and care farmers. care farmers explained that actively working alongside other people in the cf/working in teams encouraged the development of relationships between people on the cf. this illustrates the relationship between work and the development of relationships. they explained that this helped alleviate the social isolation that some service users may experience, especially those who were unemployed. they discussed the importance of creating a sense of community that extended beyond the time on the cf: it stops them being isolated for one thing, because there’s nowhere for them to go, i mean that’s really sad, i mean people used to go to the pub, didn’t they, none of that any more really, not round here, very few pubs, plus if you’re unemployed which quite a few of them are. cf , centre i think they like coming here, they like the camaraderie, they like the enjoyment, they like the biscuits and the tea, that’s for sure, i mean i made that point, but it’s the way they’re treated. cf , centre the probation staff interviewed were less familiar with the way in which service users interacted with each other and the care farming staff, as they did not have any observational experience upon which to recall. one probation officer did, however, seem to offer some explanation for how groups managed on the farm: once you get people there who are all there all committed they tend to drag each other along, and they know everybody is there to do, you know, they know everyone is there because they have to be there but they know the people are at least trying to change, and then it gets better i think as time goes on really. po , centre doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. belief in the care farm all but one of the service users who attended the farms at centres and mentioned that they were initially cynical and reluctant about attending a cf but soon realised the benefits. they emphasised that they had gained from and enjoyed their time on the cf and wished more resources were available to the farm so it could expand and continue to help other service users in the way it had benefited them. it is of little surprise that service users in centre did not voice a belief in the cf to the same extent as those at other farms: i think it’s a really good idea, it helped me out, helped a lot of other people out, and i think they should keep it up, try and expand their farm a little bit more or something. su , centre it’s everything, just the niceness of the staff, and everything, just the whole thing, and you could speak to [supervisor’s name] and even the drive on the first day i was like no i don’t like this, i ain’t doing it, i ain’t going to no farm, i ain’t planting no potatoes, and then for me to go through it from what i’ve gone through for the farm, you know, and for me to say i will come in here out of my own time and tell people hang on a minute bruv, a i probably know you off the street and b i’m telling you now it’s alright, [cf] is alright man. su , centre oh yeah, i just wish somebody would give it a chance down here just to see the better things, the positive things down here instead of all the negatives, cause there’s no negatives down here, cause somebody give it that one chance, just to show, just for us to show them that it would work and everything could be a lot better. su , centre probation staff in centre appeared to hold positive beliefs about the benefits of the cp projects. they often identified projects that had the potential to rehabilitate probation service users and each seemed have a particular favourite: [p]ersonally i tend to recommend the senior attendance centre requirement for those between and , rather than putting them on an unpaid work party, because i don’t believe that that will actually help them to do anything and also the senior attendance centre is a punishment, it’s deemed a punitive element but there’s a lot of rehabilitation within the sessions that they attend. po , centre the farm is the only project that we have that’s anything like that in terms of the length of time it runs for and in terms of the fact that it takes up a whole day, we don’t have anything else here that, if we’re to say to someone ok look you need to change your lifestyle, there isn’t that much else that we could say to someone ok well i’m going to put you in touch with somebody that’s going to take a day or two out of your week, but isn’t just punitive, because we’ve got unpaid work, but you know actually has that more rehabilitative slant. po , centre in contrast, the probation staff who worked with service users undertaking unpaid hours did not seem to hold any special regard for the cf over and above any of the other projects, possibly reflecting the fact that those with specific needs were already perceived to have been supported within other orders. looking back this theme consists of descriptions of instances in which service users reflected on their past lives, specifically their criminogenic attitudes and behaviours. some service users on all three cfs recounted the drug use, homelessness, stress, chaos and unhappiness that characterised their lives prior to their convictions and presence on the cfs. they explained that at the time, they were carried away in these the qualitative study nihr journals library www.journalslibrary.nihr.ac.uk activities and neither could see the pointlessness and selfishness of their behaviours, nor were they aware of their own unhappiness: su : yeah i stopped going raving, i used to, cause i’d done all the squatting and we used to do squat raving and i used to take loads of drugs every week, and i stopped taking all the drugs. interviewer: so who has helped you with that then, the drugs side of things, or did you just do it yourself? su : i just did, i just didn’t want to do it any more, i was taking all the raving drugs every weekend, all the party drugs to keep you awake all night, and i just, it’s a never-ending circle just goes round and round. interviewer: so i suppose you get to a point where you can’t see a reason to not do that? su : yeah, and you can’t see a way out either, it’s just a vicious circle, you don’t know what you’re doing, all your friends are doing it, you don’t see the bad in it, until afterwards, and now i think, what was i doing? centre i didn’t have no moods and emotions, i didn’t give a monkey’s, i was taking amphetamines but getting psychosis, and was just, i didn’t realise how unhappy you are, you don’t realise how unhappy you are until sommat changes in your life. su , centre one of the service users in centre mentioned that the easy environment of the cf allowed them to think, reflect on their behaviour and plan their future activities. the other service user who discussed reflecting on the past stated that they had done this prior to attending the cf. the two younger service users in centre mentioned that they often thought about their criminogenic behaviours on the way to and from the cf but explained that this resulted from having to complete a co and was not specific to attending the cf: interviewer: ok, and reflecting on things a little bit more? su : yeah a little bit to be fair yeah. interviewer: is that the thing about being outdoors a little bit, being away from it all? su : no, just not saying this is where you’ll end up, or prison, if you reoffend again, so yeah. su : cause i do think about things i do think about it, while i’m on my way there and on my way home. interviewer: but you could do that to any [co] couldn’t you? su : yeah i could do that to anything, i would be doing that to anything, and i don’t want to be there, i don’t want to be at any community project, but nobody does, but it’s one of the better tasks that you can do for community service. centre personal growth and new identities this theme consisted of a number of subthemes relating to ( ) gaining skills and knowledge, ( ) having a sense of worth and achievement, ( ) feeling the change and ( ) breaking up and making up. it should be noted that this theme was not as well supported in the interviews as the other identified themes. this may be due to the challenge that service users felt in talking about their experiences in depth; however, the doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. data there are provide valuable insight into the personal growth of service users. for example, most service users mentioned that they had acquired useful skills from working on the farms: the atmosphere is different, you can learn more things, you can get a trade if you thought about it, there’s a lot of various things to do, you just need a push in the right direction. su , centre yeah i’ve got qualifications, in rustic furniture making and horticultural seed sowing, things like that, a mechanical one, which was quite good. su , centre however, younger service users at the farm in centre who were both employed did not derive the same benefits: interviewer: right, ok. so have you learned any skills while you’ve been on the farm? you can be honest. su : not really . . . no, not really. it’s just, normal stuff, anyone can do it, it’s just straightforward. su : yeah learned how to garden and be a rubbish man and, i don’t know, work in a stables, whatever, yeah, . . . i’m not really that sort of person i’m more of a business person, sales person, so whatever, so even though it’s good i’ll never need it. centre service users described feeling a sense of worth and achievement in two ways. the first way given was in relation to the completion of a task or the attainment of a reward. the second was the knowledge that they were contributing positively to the environment around them. this could be by feeding the cows, caring for the animals around or by keeping the environment tidy and creating a nice atmosphere for others on the cf: [w]hen i achieved sommat, it looked good, did all the greenhouses, i just took pictures of all the cabbage patches i did and that . . . i’ve got it all on my [social media page] and that, all the pictures and stuff that i did. su , centre you get a hot dinner, which is alright, nice food, not monetary rewards or anything, but i just, i think it would be more personal rewards in your own head really. su , centre all care farmers discussed seeing changes among service users who had attended their cfs. the care farmer at centre recounted instances in which former service users used the skills they had acquired while on the cf and set-up businesses that allowed them to earn a living without resorting to crime. other care farmers reported how they observed a positive change in behaviours while on the farm: i’ve got lads now that have set up businesses and all they’re doing is building benches, they’re building planters, they’re earning a living and they’re spending their time building, making, selling, than thieving, getting caught, you know, and they come back. cf , centre [i]t’s more about the nature of the work that they’re given, it’s work that can be seen, when we can find work that immediately shows a result . . . in fact there was a situation literally with the strimming, where two guys, and they wouldn’t go home when they were told to go home they said, ‘no we want to finish it’. now i’m not, you know, i just had to let them get on with that, you don’t interfere with the qualitative study nihr journals library www.journalslibrary.nihr.ac.uk that, because to me that showed real value added in terms of the change in their behaviour as individuals. and that’s come from within, it’s not come from without. cf , centre development of a logic model on care farming for probation service users by combining the findings from the current qualitative study with the existing theory on care farming and desistance and the logic model developed from the literature review (see chapter ) we were able to construct a logic model that was specific for probation service users (figure ). this involved fitting the themes from the qualitative findings to the mechanisms identified in all service user logic model (see figure ). the new logic model for probation service users differs from those that were constructed as part of the literature review, as it included the views of care farmers rather than just service users. as explained in chapter , we consider this to strengthen the logic model. only the process and final outcomes measured in the published studies included in the systematic review are shown in figure . other process and final outcomes displayed in the other logic models are likely to be relevant here, but as yet these have not been measured for probation service users. summary this qualitative study provides contextual insights into probation services and the use of cfs that can support the interpretation of key findings in the pilot study. it also suggests which mechanisms appear to be operating to further aid the development of the logic model for this particular service user group. probation officers confirmed a range of factors that influence allocation decisions for service users that are not always recorded in the probation system. these added a layer of complexity in establishing the influence of various confounders on health outcomes. in centre , probation staff confirmed that those attending the cf had the most entrenched behaviours and were the most challenging to support. in centre , the probation staff worked only with those on unpaid hours with no specific identified needs; however, within this there was recognition that some service users were more challenging to support than others. probation staff tended to talk about whether or not staff at the various unpaid work placements (particularly charity shops and the comparator site warehouse) could cope with certain service users but they did not mention staff at the cf in this context. this supports informal discussions that were held at the probation services at the time of the pilot study set-up. both the manager at the comparator site (warehouse) and staff at probation services talked about the types of individuals who would be appropriate. specifically, as a business, the comparator site had targets to meet for their employer. it, therefore, expressed a preference for individuals who were willing to work with minimal disruption. the cf, on the other hand, did not rely on production to support itself and, therefore, it was not subject to the daily pressures of the warehouse. this meant that the cf could take service users who had more challenging behaviours. these early discussions also indicated that the cf even took in some high-risk (of harm and reoffending) probation service users, even though officially it was allocated as a placement for medium- to low-risk probation service users. our qualitative study included care farmers, service users and probation staff. many of the studies included in our literature review (see chapter ) only included service users and, indeed, in studies that included others we used data only from service users to construct our logic model. the benefit of including care farmers here is twofold. we were able to interview only a small number of service users, and many of them were distrustful of authority figures. although we attempted to interview people in neutral locations, there was little motivation for people to take part outside their unpaid hours or supervision sessions. thus, the institutional setting of the probation offices became the setting for interviews. this created a natural divide between the interviewers and the service users, who did appear reluctant at times to reveal personal feelings. by also including care farmers as interview participants, we were able to gain insights from one individual about many of the service users. we were aware that care farmers could have referred to only positive changes within service users, but they did mention that some service users were ultimately not doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. http://publications.naturalengland.org.uk/copyright http://publications.naturalengland.org.uk/copyright intervention components mechanisms (linked to theoretical concepts) outcomesprocess outcomes confidence (t) self-esteem vocational skills (t) negative behaviours (t) + personal identity (t) physical health/nutrition reduction in anxiety (t) mental well-being: achievement and satisfaction; meaningfulness; feeling valued and respected; nurturing; distraction; feeling safe; structure to life; stimulation; and reflection personal growth: learning new skills; and creating a new identity being socially connected: social relationships; belonging/ non-judgement; and nurturing physical well-being (eating meals together) work: real and useful and hard work, motivating and engaging, and enabling skills acquisition animals: tasks involving animals break down macho personalities, and learn to care the farmer: accepting and approachable. can be trusted, joins in activities. creating safety. practical support given being in a group: avoiding contact with those involved in discourse. trying to keep self to self. but having lunch together, working in small carefully selected groups the setting: escape from negative environments/public viewing figure logic model on care farming for probation service users. t, theory based; coloured process outcomes equates to evidence from qualitative literature; black + symbols = qualitative evidence where – is no significant difference and + is significant difference. t h e q u a l it a t iv e s t u d y n ih r jo u rn a ls lib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k suited to the farm and were asked to leave. this was supported by probation staff, who also talked about service users dropping out and not completing their time at the farm. the additional benefit of including care farmers in the interviews was that they discussed changes in individuals that the individuals might not recognise in themselves. the care farmers suggested that service users were not always aware that care farmers were working on their personal development through specific interactions, such as presenting a sheep to them with the implicit aim of breaking down the bravado or even sitting down to eat a hot meal together with the unspoken aim of creating a social environment. this insight and different perspective have enriched the data collected in this study. the themes that emerged provide an interesting fit with existing theories on desistance and other theories that have been connected with care farming that contributed to the logic models. the five intervention components represented within the logic model were all represented thematically within the interview data. in particular, the farmer and the animals seemed to be core to many of themes and mechanisms suggested within the logic model. for example, the farmer was undoubtedly responsible for creating and maintaining the easy environment that promoted a sense of non-judgement, value and respect. by creating tasks that were novel and interesting, service users felt motivated and satisfied and they gained more skills. these concepts are clearly present within desistance theory. the role of animals on the farms offered a unique insight into how care farming might work in a different way for probation service users compared with other vulnerable groups. no other studies have talked about the role of farm animals in breaking down macho personas. here it appeared that working with animals enabled the more vulnerable side of service users to be exposed, thus paving the way for more open and honest interactions. although these almost seemed like pivotal moments to care farmers they were not mentioned by service users. a number of possible explanations exist: the setting and the lack of established relationships limited the extent to which service users were able to open-up during interviews; those who experienced this chose not to be interviewed, perhaps as part of their continued macho persona; or the service users did not recognise this as a key moment or factor in their changing attitudes. one theme, in particular, stands out as conflicting with the existing logic model for other service user groups. the importance of developing social relationships as a mechanism within the logic model featured strongly across many of the studies within the literature review. among the probation service users, however, there was a clear message that social contact was to be avoided. there was a desire to just complete the order with minimal interaction, either to avoid negative influences (as appeared to be the case for centre ) or to just compartmentalise the experience and banish it from memory (as suggested at centre ). interaction between care farmers and service users did appear to be more open and service users seemed to value the contact. care farmers were more positive about developing relationships between service users and, again, this difference in experiences might partly reflect the interview sample. in contrast to a number of other qualitative studies about care farming, we have identified service users with negative experiences. most of these experiences relate to cf , where the work was considerably less varied, there was a lack of a therapeutic element and it was without a clear care farmer role. however, this further helps to clarify what it is that a cf needs to provide to benefit probation service users. it was clear from the interviews at centre that the experiences of service users, the care farmer and the probation staff concurred. there was a collective sense that care farming offered structured rehabilitation, meeting the needs of service users in a unique way. the positioning of care farming as a sa was clearly well-thought through, with probation staff and care farmers closely aligned in their understanding of what care farming could offer and who would be suitable to attend. the views of the care farmer in centre appeared to be misaligned with that of the probation services. whereas it was offered as unpaid work to service users and, therefore, was viewed as more of a punishment, the care farmer talked about non-judgement, social reintegration, safety and nurturing, which are concepts that feature in desistance theories. it is unclear if service users attending the cf here, or even probation staff, considered a need for rehabilitation. furthermore, as a punishment it is unclear if service users felt less able to draw on the potential benefits of the cf because of the overriding message that it was there to punish rather than to doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. support. discussions between the care farmer and the probation staff about the positioning of care farming and its role in supporting targeted rehabilitation could be of value to service users and probation staff. in centre , although the cf was officially recognised by care farming uk, it was clear that the over-riding intention was to support the cf’s charitable efforts to help the homeless, and the farm was a means to do that with free labour from probation service users. service users in general found this to be a less therapeutic environment with routine site maintenance being the main activity. probation staff also did not seem to favour the cf over and above any other unpaid work placement. in this respect, apart from the farm being labelled as a ‘cf’, both the service users and probation were aligned in their views about this particular placement. care farms aim to offer therapeutic benefits through farming activities. cfs that can clearly demonstrate this should therefore be used as a rehabilitative requirement. care farmers need a clear understanding about how they can contribute to the process of rehabilitation so that they can communicate to probation services and appropriately position themselves within the right type of co. the qualitative study nihr journals library www.journalslibrary.nihr.ac.uk chapter discussion and conclusions this final chapter brings together the four different elements of this study: the mixed-methodssystematic review of the impact of care farming; the quantitative findings of the pilot study; the health economics findings; and the qualitative exploration of the relationship between probation and care farming and the cf experiences of service users. the discussion points below are structured to align with the objectives of the study, highlighting the key findings and setting them within the context of the existing literature when appropriate. systematic review evaluating the impacts of care farms the studies included approximately participants from a range of service user groups. the largest single service user group (albeit spanning a range of conditions within) was those with mental health problems ( out of studies). based on data from qualitative studies (including the mixed-methods study) and information from theories we were able to develop logic models to explain the mechanisms for change for four service user groups: mental ill health, substance misuse, disaffected youth and learning disabilities. as studies reported combined data for mental ill health and substance misuse, there is one logic model for both groups. although there were some data on older people and individuals with autistic spectrum disorder, they were insufficient to develop a service user-specific logic model. the developed overall model (for all service user groups) highlights the importance of being in a non-judgemental, structured, stimulating and safe environment that allows for reflection, helping individuals to understand themselves, to feel that they belong, are valued and respected, to support them to develop social relationships, to have a sense of achievement, satisfaction and meaningfulness and to learn new skills, to allow for the development, and nurturing, of a new identity if wanted and to help them become physically healthy. these mechanisms are a good fit with a number of theories that have been, up until now, mentioned only in connection with care farming. although we ordered mechanisms based on frequency and spread, we do not suggest that any one mechanism is any more important than another at an individual level. however, as a gauge, and based on available data, we observed potential differences in the way cfs work for particular service user groups. for example, a sense of achievement and satisfaction may be more important to the combined substance misuse and mental ill health group and the learning disabilities service user group than the disaffected youth, for whom feeling safe may be a priority. in this last service user group, having the opportunity to reflect seemed to be valued. although we do not have sufficient data to be able to robustly link the intervention components to the mechanisms, we do tentatively suggest that in the disaffected youth group the emphasis on reflection appears to fit with the greater focus on the ‘setting’ aspect of the intervention. as with the causal pathway between intervention components and mechanisms, the relationship between many of the mechanisms and process outcomes is unclear. for example, ‘understanding the self’ (a mechanism category), which included findings such as increasing self-respect and understanding of tasks that are manageable, was clearly linked to process outcomes relating to self-efficacy and improved confidence. however, the connection of other, seemingly important, mechanisms such as ‘belonging and non-judgement’ to outcomes is less clear. it is likely that many of these mechanisms interact in a way that is not yet understood to influence outcomes. these hidden features of complex interventions are commonly observed within logic models. a key finding within this aspect of the review was that the theoretical concept ‘restorative effects of nature’ was represented by the intervention components (but to a notably lesser extent than ‘the work’ and ‘the farmer’ components) but was not represented at all in the categories of mechanisms. this was somewhat surprising, given that, informally at least, one of the most lauded attributes of care farming is its doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. nature-based approach. only four findings of the that mapped to the theoretical concept about mental well-being could potentially relate to nature. we suggest that the absence, or near absence, of ‘the restorative effects of nature’ is not a true absence. rather, nature is the essential component of the intervention that triggers other, more overt, mechanisms to be acted out. thus, as individuals recall their experiences on the farm, it is primarily the mechanisms promoted through the work and the interactions with the farmer that are at the forefront in thought. it is not clear exactly what individuals were asked about in the qualitative studies, but given that the aims were primarily about exploring the experience and benefits of care farming, more specific questioning about nature would not have been part of the topic guides. despite being able to develop the logic models, we could not test the learning disabilities model because of an absence of quantitative data. although we could test the combined substance misuse and mental ill health group and the disaffected youth logic models, only very limited testing of secondary outcomes was possible with the disaffected youth group. based on limited quantitative evidence from only two rcts we did not find any significant positive effects of cfs in improving quality of life. we did find some limited and inconclusive evidence to suggest that care farming can reduce anxiety. for depression, although there appeared to be significant reductions following the intervention, as assessed in uba studies in the context of a rct, no significant differences were found between the intervention and the control groups. for process and secondary outcomes, there were no significant positive effects for self-efficacy and coping (measured in the rcts) at the end of the intervention. however, a significant improvement in self-efficacy (but not coping) was reported at follow-up. the possibility that there may be some delayed benefits (as with anxiety) for self-efficacy requires confirmation by future studies. a number of uba studies reported significant improvements in self-esteem, stress, affect, mood and group cohesion at the end of the intervention. however, only stress and affect were measured at follow-up ( months after the intervention ended) and improvements were not sustained. most of the primary and secondary outcomes were limited to immediately post intervention with only three (social functioning, eating and appetite, and mental status) reported beyond months. with respect to disaffected youth, there was some suggestion that coping might be improved, but that it had no impact on self-esteem. by far the most studied service user group in care farming research is people with mental ill health. although in the uk currently there are more cfs providing support for people with learning difficulties ( % of farms) and autism spectrum disorder ( % of farms) than there are for those with mental ill health ( %), only of the qualitative studies explored the experience of care farming for learning disabilities and autistic spectrum disorder. similarly, disaffected youth, who as a group are supported by around % of uk cfs, were again the focus of only four studies, , , , with two being quantitative. , yet even with this, green-care services are used relatively infrequently when compared with traditional approaches. given that, in the uk at least, cfs are underutilised, lack of capacity across the broader green-care service is not the issue. lack of access may contribute, specifically within more urban areas, which have fewer green spaces, higher deprivation and lack of transport. lack of understanding and awareness is, however, likely to be a major factor. in some countries, such as norway, sweden and the netherlands, where care farming is well established and research is most active, there is greater integration with statutory services. in northern ireland and republic of ireland there has been an active push to market care farming directly to commissioners, combined with the establishment of a network of farms supported by european union funding, and this could be an option in areas where engagement has been low. maximising recruitment, data collection and follow-up throughout the pilot study we tried several different approaches to recruitment, data collection and follow-up. it must be noted, however, that the dissolving of probation trusts in , subsequent privatisation during our study implementation period and the closure of one of our cf sites had significant impacts on the feasibility of discussion and conclusions nihr journals library www.journalslibrary.nihr.ac.uk identifying, recruiting and following up participants. these adverse circumstances meant that of the participants that we planned to recruit across the cfs and comparators in all sites, we were able to recruit only , of whom were allocated to cfs and to comparator locations. once approached, however, users were willing to consent to participate in the study, with only not wanting to consent. as described in chapter , the main challenges to recruitment were, above all, found in our interactions with the probation system, and many of these were as a result of the impact of probation changes on staff turn over, redundancies and it and other systems. a stable probation service could facilitate more successful recruitment and, once identified, the high level of service user willingness to complete the questionnaires indicates that recruitment could be feasible, particularly drawing on the lessons learned from this study to maximise recruitment. in summary, the lessons learned on maximising recruitment and data collection included having a ra seconded from probation services within the centre (centre ), having a co-investigator working at a senior level within a probation service (centre ), incentivising users by allowing time spent with the researchers to count towards their unpaid hours (centre ), including probation service users with multiple requirement orders and recruiting at weekends as well as during the week. the differences in operations in each probation service required bespoke recruitment strategies; however, our lessons on enablers of recruitment may well be of use to other research teams working with probation services. our attempts at follow-up were less successful, with only % of our participants successfully followed up to complete questionnaires. we tried several approaches. linking with scheduled probation meetings proved particularly effective, and contacting users by short messaging service (sms), telephone and letter were of limited effectiveness, even with high-street vouchers offered as incentives. we found systematic differences between those followed up and those lost to follow-up, with those followed up less likely to smoke, and more likely to have a better quality of life (as measured by the core-om but not by the wemwbs), to find healthy foods enjoyable and to be employed. this is clearly an area of concern of bias in any future study. in terms of the feasibility of data collection and the differences between the core-om and wemwbs questionnaires, our experience and data on the questions answered point to greater challenges with the core-om than with the wemwbs questionnaire. the positive framing of the wemwbs has been identified as helping questionnaire completion by other studies. given the benefit of deriving qalys through use of the transformation of the core-om into the core- d, which is not currently a possibility with the wemwbs, the core-om is still considered a valuable measure that can feasibly be used among this population. this is reinforced by the fact that only % of the participants requested help or clarification from the ra in completing the core-om. the challenges of following up probation service users to fill in any of the questionnaire measures still present a limitation to feasibility. however, our use of pre-existing routine data, namely reconviction rates from the pnc, did prove to be a feasible approach to gaining sufficient outcome data for this group. participants consented to, and we were able to access and link, probation service and reconviction data for % of respondents. given the challenges and potential bias in following up probation service users to fill in questionnaires, the feasibility of using existing pnc data to assess reconvictions among our participants at months (or more) after completing their co is a valuable finding to inform future studies. it should be noted that reducing reoffending is the main performance indicator for the new crcs. using the reconviction data would, therefore, be of clear policy relevance to the new probation services, as they consider the services to commission. we have shown that users are prepared to consent to providing questionnaire data and the vast majority were willing to consent to access to their probation records (ndelius) and pnc data on reconvictions. furthermore, that with sufficient time and energy built into the study plan to secure the required data sharing agreements, these routine data can be retrieved from the moj and from probation services and then linked to an individual’s questionnaire data. although most of the data could be linked to pnc and doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. ndelius records, a small proportion ( out of ) could not. failure to access certain records may relate to changes that occurred to information systems as part of the privatisation of probation services during the study or also because special permissions (over and above usual informed consent) to access individual records are needed. this would be the case for those who were publicly known or for whom the release of their data would put them at risk of harm. although we are only speculating on the former, we know that the latter situation does exist. the possibility that individuals provided incorrect personal details at the time of recruitment into the study has been ruled out because we were able to track the progress of cos with the administrative hub, which needed the name and date of birth of the offender in order to check the records. ultimately, our study suggests that data linkage is possible. any future study must take into consideration the time required to build the necessary relationships and agreements with the moj and the required number of probation services, and the time required to recruit sufficient participants into any study and establish the necessary agreements to access the routine probation data and reconviction data from the pnc. collecting cost data and feasibility of measuring cost–utility the collecting of cost data from probation services and cfs proved challenging, particularly as our request came during the process of tendering for the new crcs. in the light of this, we collected cost data from probation services at only one of the sites. however, we were able to access sufficient data on the costs of sessions and this, in combination with the data found during the systematic reviews of the cost of crime and the results of the health service use questionnaires, provided us with sufficient data to run an exploratory cost-effectiveness analysis. feasibility of measuring differences in effectiveness between care farms and comparators although our systematic review highlights the need for further sufficiently powered studies to assess the effectiveness of cfs in improving quality of life, mental well-being and other outcomes, the experience of this pilot study highlights the challenges of doing so. we identified significant differences between the cfs and between probation services. service users had different relationships with cfs and different levels of engagement and interaction with nature. our qualitative findings show this diversity, as the farms that we studied ranged from having very well-developed rehabilitative elements, able to support clients with challenging behaviour and substance abuse issues, to very little support available and limited opportunities for clients to interact with nature. similarly, probation services showed considerable difference in how cfs were used, with some using cfs as a punitive intervention and others as rehabilitative or a mixture of the two, and in the type of service user allocated to the cfs in each setting, with one farm being allocated users who had a high risk of reoffending, higher levels of substance misuse and low unemployment, although other cfs took lower-risk users. these differences in the users allocated to cfs have not happened as a result of chance but because of a recognition (even if not formally) within probation services, particularly when the focus is on rehabilitation, that the cf may offer a more suitable and beneficial environment for users with greater needs. identifying comparators with ‘comparable’ users was challenging, with the comparator in centre taking users with very different special requirements (e.g. to counteract drink driving) compared with those at the cf. given the continued, and even increased, diversity of approaches within the new crcs, these differences are unlikely to lessen. although these issues of comparability clearly undermine a standard controlled study design, our statistical methods, particularly the use of propensity scores, detailed in chapter , present a robust way to deal with these differences, allowing comparison between sites with participants with different characteristics. discussion and conclusions nihr journals library www.journalslibrary.nihr.ac.uk in particular, it should be noted that the ogrs score, which is a predictor of reoffending combining age, gender and criminal history, proved to be a valuable composite measure for adjusting for the differences between those allocated to cfs and comparators. we were able to collect ogrs scores from % of the sample through linkage with the ndelius data held by probation. with a suitable sample size and the use of the propensity score method, we believe that a robust and reliable study of the effectiveness of cfs in reducing recidivism and improving offender health could be conducted. as a pilot study, the study was not designed to detect a difference in quality of life between users at the cfs and comparator sites. it should be emphasised that the small sample size of this pilot study limits any interpretation of the primary and secondary outcomes and cost-effectiveness results. the differences initially seen in the unadjusted reconviction rates between cf and comparator users disappeared once the differences between the two groups had been adjusted for in the analysis. the analysis of confounders highlighted the value of the ogrs score as a composite measure of the factors associated with reoffending. utilising this score in any future study is vital in order to adjust for the differences between groups, particularly as, in some probation services, those with high ogrs scores are actively sent to cfs. as all necessary variables were available from the study for both the exploratory statistical and health economic analysis, a larger study could be conducted. our study has also demonstrated that it is feasible to include an analysis of the impact of seasonality and, although this was not found to drive allocation decisions, this is another element that may potentially moderate effectiveness so needs to be included in any future study. however, a major challenge to the conduct of such a definitive study in future is the limited number of cfs that are currently contracted by probation services to receive probation service users on cos. this reduction in the number of cfs working with probation may reflect the instability of this period of transition to crcs and nps. once the new system is firmly established, it may be that more cfs are commissioned to work with probation. this would facilitate the recruitment of sufficient participants for a fully powered study in improvements in quality of life and fewer reconvictions in cfs compared with other co placements. it is encouraging that recent parliamentary assessment of the transforming rehabilitation programme emphasises the need for moj to overcome the ‘significant barriers to encouraging the promised innovative practice in rehabilitating offenders’ and to realise the ‘full potential of the third sector’ (p – ). these recommendations bode well for cfs, which are clearly third-sector organisations that are able to provide innovative solutions with the potential to reduce recidivism. understanding community order allocation conducting the study in three different probation service regions, and the in-depth qualitative study, helped to shed light on very different approaches within probation services, in particular how cfs are viewed (as a punitive or rehabilitative intervention) and the different approaches taken to allocation of users to the cfs or other setting. these differences are exemplified by the fact that centre used the cf as a sa, allocating users who were unemployed and who had a high risk of reoffending. this was very different in the other two centres, where probation service users had a lower risk of offending and many were employed. in centre , the qualitative findings highlighted that the comparator co sites were often unwilling to take challenging users with complex needs and who had a high risk of reoffending; this was not the same in the cfs, where all users were accepted. the impacts of this are seen in the quantitative data, in which the cf users had significantly higher ogrs scores on allocation to the cf. cfs are clearly a resource for probation in being able manage and support offenders who had a higher-risk profile. our analysis of the characteristics of users allocated to the cfs as opposed to the comparator sites highlights significant gender difference in the allocation ( % of those service users sent to cfs were women compared with % sent to the comparator sites). this gender bias is reflected across many of the care farming studies found in our review. , , , this may well reflect the preconceived ideas of probation doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. staff about which locations are appropriate for men and women to serve their co. probation staff who were interviewed considered cfs to be male dominated and, therefore, not an appropriate environment for women; how the farms became predominantly male in the first instance is not clear. the availability of independent placements (that require minimal supervision from non-probation staff) for lower-risk probation service users may be more appealing to women. in addition, given that cfs seem to take higher-risk probation service users, these placements have an over-representation of men over and above the preponderance of male probation service users. however, this does not mean that women cannot potentially benefit from nature-based interventions as part of their co and probation services may want to consider this option. we know that, at the time of the study, one cf was looking into the possibility of supporting women through a residential scheme as part of a suspended sentence order and this will be worth further investigation. our qualitative findings highlight how probation officers, responsible for allocation particularly in centres and (west yorkshire and hertfordshire), rarely considered the potential of cfs as a rehabilitative location in which the beneficial elements of the cf, so closely linked to desistance theory, could reduce recidivism. instead, the concern was for the order to be completed as smoothly and efficiently as possible. such an approach may appear to support short-term benefits for the service; however, it may reduce life improvements for individual users and, ultimately, long-term benefits in reducing recidivism. when the cf was seen as aiding rehabilitation, particularly for those seen as having a higher risk of recidivism and more challenging needs, probation officers were more aware of the potential benefits of the farm environment. logic model of mechanisms for change among probation service users a significant contribution of this study is the development of a logic model that elucidates the mechanisms of change leading to potential improvements in health outcomes. the logic model derived from the mixed-methods review guided the analysis of the qualitative data collected from users, care farmers and probationers as part of this study. the qualitative themes that emerged were well aligned with the all-service user logic model presented in the review. for example, the easy environment identified by the users in our study fits well with the description of the ‘setting’ provided by other cf service user groups, the themes from our participants highlight the important and supportive role of the farmer or supervisor and the interaction with animals and the work fits well with the logic model from the review. the mechanism of ‘personal growth’ was also clearly identified by our participants and those from the synthesised evidence. one area in which there are differences, however, is in developing relationships; the building of friendships and opportunity to spend time in a group was seen as a positive benefit of the cf for all service user groups in the review; however, for the probation service users in our study, many were keen to keep to themselves, serve their order and not build any new friendships with other probation service users that might get them into trouble again at a later date. it may be that for a probation service user attending cfs, building relationships with the farm staff and probation supervisors may be more acceptable and valuable to aid service users build a new non-offending identity. the idea of ‘looking back’ emerged as a distinctive theme among the probation service users, whereas this concept was seen as integral to the setting among the other service users studied in the review. in fact, probation service users rarely identified the farm as a setting for ‘looking back’, and this was more likely to happen on the journey to and from the farm. it may be that the distractive elements of the farm – which is a very important element for mental health cf users – were sufficient to keep probation service users from looking back on their past. according to attention restoration theory, this opportunity for space or time-out from anxiety-inducing thoughts is part of mental health recovery, and it may also be that probation service users are able to benefit from this time-out to gain a new perspective on their offending behaviour and its impact on their lives. discussion and conclusions nihr journals library www.journalslibrary.nihr.ac.uk strengths and limitations of the research the limitations of each component of the study are presented in each corresponding chapter. here, the overall limitation of conducting this pilot study during a period of major transformation of probation services should be noted. in particular, the changes in staffing within probation, managing relationships with cfs when they faced contractual uncertainty with probations services, the challenges of co-ordinating researchers’ site visits with the availability of service users and the need to establish multiple data sharing agreements with both the old and new organisations significantly affected our ability to recruit, both to the qualitative and quantitative study, the follow-up of participants and the timely implementation of the study. a strength of this study is that, with all these challenges, we have been able to try a number of different mechanisms for recruiting and following up participants, and the learning gained from these is presented throughout the report, particularly in chapter . however, with changing systems it may be that the process would need further adaptions in future. a further limitation of the study is the limited engagement of service users. although at the design phase we had hoped for significant engagement in the design, implementation and analysis of the study, we were successful in gaining inputs only into the early stage of designing information sheets and recruitment processes. in part, this was attributable to our strategy of linking into existing service user structures established by probation services. with hindsight, a more productive and rewarding engagement could have been nurtured if we had established our own service user group with a core group of participants who were interested in our study. we could have supported participants in building their understanding of the concept of the study, and care farming, strengthening their capacity for understanding research. although this would have engaged only a small, and perhaps unrepresentative group, it would have brought valuable user perspectives to bear on our work. recommendations for future research our study has highlighted that, although challenging, it is feasible to collect the data required to conduct a cost-effectiveness analysis of cfs compared with other cos. we recommend that future studies consider a primary outcome of reconvictions. data on this outcome can be acquired, with the correct permissions and arrangements, from the moj, and our study shows that participant consent to, and linkage of, individual data is feasible. furthermore, this outcome is of utmost importance to policy-makers and commissioners within probation services. our study has also shown that health and social outcomes for probation service users can be collected. the constraints to following up this participant group to complete outcome questionnaires should not be underestimated. in the light of this, we recommend that health and social outcomes are considered as secondary outcomes in future research. the lack of cfs currently contracted by probation services would make a larger study unfeasible at the present time; however, it may be that this changes as the restructured probation services re-establish contracts with a wider range of providers, particularly those in the third sector, with a view to encouraging innovation and ultimately reducing recidivism. our study highlights the challenges of finding ‘comparable’ comparator sites and participants. we recommend that the propensity score analysis methods used in this study be considered and used more extensively in natural experiments to respond to this inevitable lack of comparability found when assessing cost-effectiveness in complex social and public health interventions. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. methodologically, conducting such a study with probation service users as participants has many advantages, not least because while serving their co they are continually monitored by probation services, enabling some degree of follow-up and, most encouragingly, reconviction data can be used as provide outcome data for % of participants. furthermore, data on confounders can be gathered from probation services, particularly the ogrs score, which can be used within the study analysis. however, it should also be noted that with increasing emphasis on third-sector provision of health and social services for mental health (including long-term conditions and dementia) that commissioners across the health, social and criminal justice economy are seeking evidence of the effectiveness of cfs. further studies to determine effectiveness in improving mental and physical health for these client groups would clearly be of value. our review found much similarity across the qualitative studies on the mechanism and process outcomes for a range of service user groups attending cfs. we would therefore recommend that conducting further similar qualitative studies would need a clear justification and explorations in new directions. one group that we identified as consistently absent, both in the qualitative and quantitative studies in the review, was those service users who decided to leave the cf. although these participants may be more challenging to identify and interview, such work would be valuable in providing greater depth of understanding of who may benefit from cfs and may not. for probation service users, this issue is somewhat different, as they must serve their order where they are allocated or they are in breach of their co and return to court. however, among service user groups that can leave the farm out of choice, a great exploration of the reasons for this would be valuable. this may be of particular relevance to female service users; as cfs are male dominated it may be that some women are de-incentivised to stay. a further area to be explored, which may lend itself to both quantitative – the connectedness-to-nature scales used in this study are valuable here – and qualitative research, is the link between interaction with nature and health. our review identified how the relationships were rarely explored explicitly within studies, and yet this could provide more detailed information on this characteristic of cfs that is rarely found in other similar interventions. recommendations for practice although further research is needed to determine the cost-effectiveness of cfs in reducing recidivism, our review and qualitative study highlight the potential of cfs to provide innovative rehabilitation interventions to benefit the well-being of probation users and, ultimately, to reduce recidivism. in the light of this, we recommend that probation services, both crcs and nps, build an understanding of the cfs within their catchment areas, identifying their potential to support the rehabilitation of probation service users. our study highlights that not all cfs are the same, and an understanding of the ethos and aims of the farm is therefore important before considering allocating service users. cfs that can clearly demonstrate that they offer therapeutic benefits through farming activities should be used as a rehabilitative requirement. aligning probation service goals and practice to focus on rehabilitation, rather than a purely punitive focus, is clearly a first step in this process. considering specific rehabilitation needs of individuals and aligning these with the intervention components of local cfs will help ensure that those most likely to benefit gain access to cfs. our logic model indicates that probation service users who might benefit from learning new skills and participating in meaningful, structured work with a strong role model figure of the farmer, would be particularly suited to a placement on a cf. in order to ensure that probation services understand the potential benefits of cf, care farmers need a clear understanding of how they can contribute to the process of rehabilitation and an ability and means to communicate this to probation services. this will allow cfs to appropriately position themselves within the right type of co. discussion and conclusions nihr journals library www.journalslibrary.nihr.ac.uk despite the turbulence within probation services during the time frame of this study, we have benefited from the willingness of probation services and the moj to establish data sharing agreements that have enabled us to use existing probation and pnc data. we strongly recommend that requests to access and link individual data continue to be supported within the new probation structures. this will allow further robust research, which can take into consideration important confounders, to understand the effect of different probation interventions on recidivism. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. acknowledgements joyce croker (research fellow, public health) led the qualitative data analysis and contributed to thepreparation of a manuscript for publication. judy wright (senior information specialist) designed and conducted the searches for the systematic reviews. thomas fleming (data management manager) designed the outcomes database, provided guidance during the development of data sharing agreements with partner organisations and performed the data linkage and anonymisation. rachel lunt (nps administrator) performed recruitment in one centre and qualitative interviews. jen ball (finance officer) managed the budgets and liaised with partner organisations to arrange invoicing. david brennan (research support secretary in public health) organised the steering group meetings and the minutes from them, led in organising the way forward workshop and transcribed the qualitative interviews. adrian slater (legal adviser) and kevin darley (head of it security) reviewed and advised on data protection and the development of the isas. we also wish to thank the following people: the many probation staff who assisted us in various ways during the study at a particularly difficult time. the care farmers and staff at new gokul who were also generous with their time. the comparator site staff who accommodated us, enabling us to perform recruitment and follow-up efficiently. the staff at the moj and the police services who made the development of isas and a memorandum of understanding possible and performed data extraction diligently and efficiently. marina garcia llorente who contributed to the campbell literature review. contributions of authors helen elsey (lecturer in public health) led the design, overall implementation and synthesis of the project, ensuring that milestones were met and the overall objectives of the project were addressed. rachel bragg (director of care farming uk) provided support and guidance throughout the duration of the study. marjolein elings (scientist and researcher in agriculture and health) provided support and guidance throughout the duration of the study. cathy brennan (lecturer in public health) was an active member of the steering committee, providing guidance throughout. tracey farragher (statistician and public health epidemiologist) carried out the statistical analysis for the main pilot study. sandy tubeuf (associate professor in health economics) designed the health economics analysis, led the health economics systematic reviews and performed the cost-effectiveness analysis. rochelle gold (previously manager of the research department at west yorkshire probation trust) provided access to a number of contacts within probation and provided guidance on a number of procedures within probation. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. darren shickle (professor in public health) was an active member of the steering committee, providing guidance throughout. nyantara wickramasekera (research fellow, public health) took a lead role in the systematic review on quality of life and conducted the systematic review on cost of reoffending. zoe richardson (research fellow, public health) undertook recruitment and follow-up during the pilot study and contributed to screening during the literature review on quality of life. janet cade (epidemiologist, leading the nutritional epidemiology group) was an active member of the steering committee providing guidance throughout. jenni murray (senior research fellow, public health) co-ordinated the project and took lead roles in the systematic review on quality of life, quantitative pilot study and the qualitative study. publications and presentations publications elsey h, bragg r, elings m, cade je, brennan c, farragher t, et al. understanding the impacts of care farms on health and well-being of disadvantaged populations: a protocol of the evaluating community orders (eco) pilot study. bmj open ; :e . elsey h, bragg r, brennan c, murray j, elings m, richardson z, et al. the impact of care farms on quality of life among different populations groups: protocol for a systematic review. oslo: the campbell collaboration; . url: www.campbellcollaboration.org/lib/project/ (accessed june ). wickramasekera n, wright j, elsey h, murray j, tubeuf s. cost of crime: a systematic review. j crim justice ; : – . elsey h, murray j, bragg r. green fingers and clear minds: prescribing ‘care farming’ for mental illness. br j gen pract ; : – . murray j, elsey h, gold r. care farming and probation in the uk. in barton j, bragg r, wood c, pretty j, editors. green exercise: linking nature, health and wellbeing. london: routledge; . presentations murray j. the impact of care farms on quality of life among different population groups: systematic review. agriculture in an urbanizing society, rome, italy, – september. url: www.agricultureinanurbanizingsociety.com/?cat= rome (accessed september ). tubeuf s. happiness is in the field: economic evaluation of care farms for probation service users undertaking community orders. french health economists days, dijon, france, – december . elsey h. the impact of care farms on quality of life among different population groups: systematic review. faculty of public health conference, brighton, uk, – june . nyantara w. the impact of care farms on quality of life among different population groups: systematic review. hsruk symposium, nottingham conference centre, nottingham, uk, july . acknowledgements nihr journals library www.journalslibrary.nihr.ac.uk http://www.campbellcollaboration.org/lib/project/ http://www.agricultureinanurbanizingsociety.com/?cat= data sharing statement all available data can be obtained by contacting the corresponding author. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. references . hassink j, zwartbol c, aricola hj, elings m, thissen jtnm. current 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. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. https://doi.org/ . / - - - - _ https://doi.org/ . /apt. . . https://doi.org/ . / qp oa http://www.clinks.org/sites/default/files/shift% hereforshire% toc.pdf http://www.clinks.org/sites/default/files/shift% hereforshire% toc.pdf https://doi.org/ . /jech. . . appendix search strategy for the quality-of-life systematic review the following databases were searched in november : l assia (via proquest): to current l cinahl (via ebscohost): to current l the campbell library l criminal justice abstracts (via ebscohost): to current l conference proceedings citation index – science (thomson reuters’ web of science): to current l conference proceedings citation index – social science & humanities (thomson reuters’ web of science): to current l embase classic and embase (via ovid): to november l eric (via proquest): to current l francis (via ebscohost): to current l global health (ovid): to week l greenfile (via ebscohost): to current l medline (via ovid): to week november l medline in-process & other non-indexed citations (via ovid): november l national criminal justice reference service abstracts (via proquest): to current l psycinfo (via ovid): to week november l sciences citation index (thomson reuters’ web of science): to current l scopus (elsevier b.v.): to current l scie: to current l ssci (thomson reuters’ web of science): to current l social services abstracts (via proquest): to current l sociological abstracts (via proquest): to current l web of science, sci-expanded, ssci: to current. search strategies included the search concepts care farming and agricultural-based rehabilitation therapies. subject headings and free-text words were identified for use in the search concepts by the information specialist and project team members. further terms were identified and tested from known relevant papers. experimental animal studies were removed from the search. there were no language or publication date restrictions. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. appendix preferred reporting items for systematic reviews and meta-analyses checklist for the care farm mixed-method systematic review section/topic # checklist item reported on page number title title identify the report as a systematic review, meta-analysis or both: the impact of care farms on quality of life among disadvantages populations: a systematic review p. abstract structured summary provide a structured summary including, as applicable: background; objectives; data sources; study eligibility criteria, participants and interventions; study appraisal and synthesis methods; results; limitations; conclusions and implications of key findings; systematic review registration number p. xix introduction rationale describe the rationale for the review in the context of what is already known p. objectives provide an explicit statement of questions being addressed with reference to participants, interventions, comparisons, outcomes and study design (picos) p. methods protocol and registration indicate if a review protocol exists, if and where it can be accessed (e.g. web address), and, if available, provide registration information including registration number p. eligibility criteria specify study characteristics (e.g. picos, length of follow-up) and report characteristics (e.g. years considered, language, publication status) used as criteria for eligibility, giving rationale p. information sources describe all information sources (e.g. databases with dates of coverage, contact with study authors to identify additional studies) in the search and date last searched pp. – , and appendix search present full electronic search strategy for at least one database, including any limits used, such that it could be repeated appendix study selection state the process for selecting studies (i.e. screening, eligibility, included in systematic review, and, if applicable, included in the meta-analysis) p. , chapter , inclusion and exclusion data collection process describe method of data extraction from reports (e.g. piloted forms, independently, in duplicate) and any processes for obtaining and confirming data from investigators p. , chapter , study selection, data extraction and management data items list and define all variables for which data were sought (e.g. picos, funding sources) and any assumptions and simplifications made pp. – , chapter , study selection, data extraction and management doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. section/topic # checklist item reported on page number risk of bias in individual studies describe methods used for assessing risk of bias of individual studies (including specification of whether this was done at the study or outcome level), and how this information is to be used in any data synthesis p. , chapter , quality assessments and assessment of reporting biases summary measures state the principal summary measures (e.g. risk ratio, difference in means) pp. – synthesis of results describe the methods of handling data and combining results of studies, if done, including measures of consistency (e.g. i ) for each meta-analysis pp. – , chapter , data synthesis appendix nihr journals library www.journalslibrary.nihr.ac.uk appendix data sharing agreements information sharing agreements with probation services initially, creating isas with probation services meant developing three isas; however, the split in probation into the nps and the individual crcs meant that the process became more complex. the isas that had been developed with probation services prior to the split remained with the crcs. for probation service users who were moved to the nps, a one-off memorandum of understanding was developed with noms. in centre , access to nps offender data was no longer possible; therefore, these data were obtained from noms. in centre , a lack of progress with recruitment and high staff turnover in probation meant that the isa was not developed. instead we sought ndelius data directly from noms. in centre , the it service at the crc was able to access nps offender data and provided ndelius data for all study participants apart from those they were unable to trace (through name and date of birth). see figure for the data acquisition timeline. obtaining data from the police national computer based on the premise that it was a national system, we approached the moj to identify if reconviction data could be obtained from one source. this was requested prior to any recruitment. at the time, the moj were piloting the ‘datalab’, which held aggregated offending history data, and it was suggested that this could be used as a source of outcome data for the comparator group. as the datalab did not hold wemwbs outcome data and it did not allow access to individual-level data for the identification of potential confounders, we could not use this source. the moj were subsequently willing to provide anonymised individual-level data, but were unable to commit the time required to develop a data sharing agreement and so our request was declined. as a consequence, we approached the police services linked with each of the three probation services. in centre , the local probation service held an existing isa with the local police force. the request for reconviction data therefore went through the local probation service (with which we held an isa). at the time of request, the probation service had already become the crc and it did not have access to nps offender data. its request to the police (from us) contained only the pnc numbers for crc probation service users. therefore, pnc data from this source did not include nps reconviction data. at centre , a local police disclosure manager contacted us regarding what he understood to be the development of a nationwide isa between the department of health and the police. after clarification about the nature of our study, the development of an isa was provisionally agreed. over a number of months, however, no progress was made despite attempts, and as there was lack of progress in recruiting probation service users at this site the decision was taken not to pursue the isa further. at centre , we tried a number of routes to access reconviction data. the approach used in centre did not work in centre . our contact in probation identified the business development manager as being the appropriate person to liaise with the pnc manager within the local police force. unfortunately, our request for access to data was declined. we subsequently approached a contact in the police and crime commissioners office; however, this attempt proved fruitless as well. we finally identified an information request service on the police website and our request was approved. as we were able to provide written proof of consent to access criminal record data, the information service considered that an isa would not be required. the service was also satisfied that data could be transferred safely, as we had acquired an account with the criminal justice secure e-mail system. data provided at this centre included both nps and crc reconviction data. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. data items for data sharing agreed n o v e m b e r d e c e m b e r ja n u a ry f e b ru a ry m a rc h a p ri l m a y ju n e ju ly a u g u st s e p te m b e r o c to b e r n o v e m b e r d e c e m b e r ja n u a ry f e b ru a ry m a rc h a p ri l m a y ju n e ju ly a u g u st s e p te m b e r o c to b e r n o v e m b e r d e c e m b e r ja n u a ry f e b ru a ry m a rc h follow-up completed moj decline request for individual-level data centre data sharing agreement crc commenced to finalised ndelius data requested from crc for crc participants pilot ndelius data for crc participants received � discussions started with police via crc regarding data sharing requirements reconviction data requested from police for crc participants pilot reconviction data for crc participants received � centre data sharing agreement crc commenced to finalised ndelius data requested from crc for all participants (crc and nps) pilot ndelius data for all participants received � attempts to access police resources via crc contact made directly to police regarding accessing reconviction data reconviction data requested directly from police for all participants reconviction data for all participants received � centre data sharing agreement crc commenced data sharing agreement crc failed (staff restructuring, unable to commit) attempts to access reconviction data from police via crc and directly noms contact made with noms regarding accessing nps ndelius data memorandum of understanding commenced and finalised ndelius data for outstanding nps services users (centres and ) requested ndelius data for outstanding nps services users (centres and ) received � moj moj were approached via noms and confirmed as able to provide nps reconviction data data sharing agreement moj commenced and finalised outstanding data received � figure timeline for data acquisition. the light blue line denotes the point that probation split into crcs and nps. planned targets were n = recruitment (centre : cf, n = ; comparator, n = ), (centre : cf, n = ; comparator, n = ; centre : cf, n = ; comparator, n = ). n = were followed up ( % loss). a p p e n d ix n ih r jo u rn a ls lib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k having developed a memorandum of understanding with noms for the ndelius data, we enquired about the possibility of obtaining reconviction data on nps probation service users. this time the moj agreed to develop an isa. data on all service users that could not be found through other sources were subsequently requested from the moj. pnc numbers provided by noms were used to request reconviction data from the moj. ten per cent of probation service users could not be found on the moj system, despite all unique pnc identifiers being checked. we have, however, clarified that future reconviction data could be obtained from moj with the development of a single isa. the time taken to develop the isas for all sites is substantial, so early planning is essential. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. appendix full tables from statistical analysis of pilot (see chapter ) table baseline characteristics by co allocation characteristic valid number allocated to cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) demographics age (years) at recruitment a ( . to ) ( to ) (– . to . ) gender: female ( . ) ( ) < . imd quintiles within cohort . – most deprived ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) – least deprived ( . ) ( . ) english quintiles . – most deprived ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) – least deprived ( . ) ( . ) employment status . full-time employed, self-employed, in education or training ( ) ( ) part-time employed or self-employed ( . ) ( ) unemployed or unable to work ( ) ( ) other ( . ) ( ) ethnic group . white british ( . ) ( ) white: other ( . ) ( ) asian or asian british ( ) ( ) black or black british ( . ) ( ) other or mixed ( . ) ( ) continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table baseline characteristics by co allocation (continued) characteristic valid number allocated to cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) probation type . crc ( . ) ( ) nps ( . ) ( ) outcomes from questionnaires core-om score a . ( . to . ) . ( . to . ) . (– . to . ) core-om category healthy ( . ) ( . ) . low level ( . ) ( . ) core-om number of missing questions b ( to ) ( to ) . ( . to . ) wemwbs score a ( to ) ( to ) – (– . to . ) connected to nature score a . ( . to . ) . ( . to . ) – . (– . to . ) connecting with nature (nature relatedness scale) . – least interconnected ( . ) ( ) ( . ) ( . ) ( . ) ( ) ( . ) ( . ) – most interconnected ( . ) ( ) health and lifestyle questions number of days of ≥ minutes’ physical activity in the last week b ( to ) ( to ) . (– . to . ) used substances during the past weeks: yes ( ) ( . ) . number of substances used during the past weeks b ( to ) ( to ) . (– . to . ) cannabis: yes ( . ) ( . ) . amphetamines: yes ( . ) ( ) . tranquillisers, sedatives and antidepressants: yes ( . ) ( . ) . heroin: yes ( . ) ( . ) . methadone: yes ( . ) ( . ) . crack: yes ( . ) ( . ) cocaine: yes ( . ) ( . ) . anabolic steroids: yes ( . ) ( ) number of days out of last drank alcohol b ( to ) ( to ) . (– . to . ) appendix nihr journals library www.journalslibrary.nihr.ac.uk table baseline characteristics by co allocation (continued) characteristic valid number allocated to cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) smoker: yes ( . ) ( ) . number of cigarettes/roll-ups per day b ( to ) ( to ) . (– . to . ) ‘healthy foods are enjoyable’: strongly agree ( . ) ( . ) . agree ( . ) ( . ) neither agree nor disagree ( ) ( . ) disagree ( ) ( . ) strongly disagree ( . ) ( . ) health and social service use number of health services (out of ) used during the past month b ( to ) . ( to ) . (– . to . ) used gp during the past month: yes ( . ) ( ) – d number of times used gp in the past month ( to ) ( to ) – d used practice or district nurse during the past month: yes ( . ) ( ) – d number of times used practice or district nurse in the past month ( to ) . ( to ) – d used physiotherapist during the past month: yes ( . ) ( . ) – d number of times used physiotherapist in the past month ( to . ) ( to ) – d used occupational therapist during the past month: yes ( . ) ( ) – d number of times used occupational therapist in the past month ( to ) – – d used psychiatrist during the past month: yes ( ) ( . ) – d number of times used psychiatrist in the past month ( to ) ( to ) – d used mental health counsellor during the past month: yes ( . ) ( . ) – d number of times used mental health counsellor in the past month ( to ) ( to ) – d used drug and alcohol worker during the past month: yes ( . ) ( . ) – d continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table baseline characteristics by co allocation (continued) characteristic valid number allocated to cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) number of times used drug and alcohol worker in the past month . ( to ) ( to ) – d used family planning service during the past month: yes ( . ) ( . ) – d number of times used family planning service in the past month ( to ) ( to ) – d used health trainer during the past month: yes ( . ) ( . ) – d number of times used health trainer in the past month ( to ) – – d used other health services during the past month: yes ( . ) ( ) – d number of times used other health services in the past month ( to ) – – d number of social services (out of four) used during the past month b ( to ) ( to ) . (– . to . ) used social worker during the past month: yes ( . ) ( ) – d number of times used social worker in the past month ( to ) ( to ) – d used helpline during the past month: yes ( ) ( ) – d number of times used helpline in the past month – – – d used family or patient support or self-help groups during the past month: yes ( . ) ( . ) – d number of times used family or patient support or self-help groups in the past month ( to ) ( to ) – d used any other social services during the past month: yes ( . ) ( . ) – d number of times used any other social services in the past month ( to ) . ( to ) – d number of medications prescribed by a doctor or other health-care professional in the past month b ( to ) ( to ) – . (– . to . ) inpatient stay during the last month: yes ( . ) ( . ) . number of inpatient night’s stay during the last month ( to ) . ( to ) – d appendix nihr journals library www.journalslibrary.nihr.ac.uk table baseline characteristics by co allocation (continued) characteristic valid number allocated to cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) visited outpatients during the last month: yes ( . ) ( . ) . number of outpatient visits during the last month . ( to ) ( to ) – d visited a&e during the last month: yes ( . ) ( . ) number of a&e visits during the last month ( to ) ( to ) – d a&e, accident and emergency department. a mean difference (and % ci) calculated from median regression. b percentage difference (and % ci) calculated from negative binomial regression. c difference in proportions of categories between co allocation calculated from fisher’s exact test. d too few subjects to conduct test in differences in co allocation. table baseline questionnaire responses by co allocation question number and cf allocation valid number response, n (%) not at all only occasionally sometimes often most of the time core-om no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table baseline questionnaire responses by co allocation (continued) question number and cf allocation valid number response, n (%) not at all only occasionally sometimes often most of the time no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) appendix nihr journals library www.journalslibrary.nihr.ac.uk table baseline questionnaire responses by co allocation (continued) question number and cf allocation valid number response, n (%) not at all only occasionally sometimes often most of the time no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table baseline questionnaire responses by co allocation (continued) question number and cf allocation valid number response, n (%) not at all only occasionally sometimes often most of the time no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) wemwbs no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) appendix nihr journals library www.journalslibrary.nihr.ac.uk table baseline questionnaire responses by co allocation (continued) question number and cf allocation valid number response, n (%) not at all only occasionally sometimes often most of the time no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) connecting with nature no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) please see the corresponding questions in appendix . doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table baseline characteristics by site characteristic site p-value for interaction between co allocation and sitea,b (n = ) (n = ) (n = ) n cf n cf n cf no (n = ) yes (n = ) no (n = ) yes (n = ) no (n = ) yes (n = ) demographics age (years) at recruitmenta ( to ) . ( to ) . ( to ) . ( to ) ( to ) ( to ) . gender: female ( . ) ( ) ( ) ( ) ( . ) ( . ) – c imd: quintiles within cohort – c – most deprived ( . ) ( ) – – ( ) ( . ) ( . ) ( . ) – – ( . ) ( . ) ( . ) ( ) – – ( ) ( . ) ( . ) ( . ) ( ) ( ) ( . ) ( ) – least deprived ( . ) ( . ) - ( ) ( . ) ( . ) imd: english quintiles – c – most deprived ( . ) ( ) – – ( . ) ( ) ( . ) ( . ) ( ) – ( . ) ( ) ( . ) ( . ) ( ) ( ) ( . ) ( ) ( . ) ( . ) – – ( ) ( . ) – least deprived ( . ) ( ) – ( ) ( . ) ( . ) employment status – c full-time employed, self-employed, education or training ( . ) ( ) ( ) ( ) ( . ) ( ) part-time employed or self-employed ( . ) ( . ) ( ) – ( . ) ( . ) unemployed or unable to work ( . ) ( . ) – ( ) ( . ) ( . ) other ( . ) ( ) – – ( . ) ( . ) a p p e n d ix n ih r jo u rn a ls lib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k characteristic site p-value for interaction between co allocation and site a,b (n = ) (n = ) (n = ) n cf n cf n cf no (n = ) yes (n = ) no (n = ) yes (n = ) no (n = ) yes (n = ) ethnic group –c white british ( . ) ( . ) ( ) ( ) ( . ) ( . ) white: other ( . ) ( . ) – – ( . ) ( ) asian or asian british ( . ) ( . ) – – – – black or black british ( ) ( . ) – – – – other or mixed ( . ) ( . ) ( ) – ( . ) ( . ) probation type – c crc ( . ) ( . ) ( ) ( ) ( ) ( ) nps ( . ) ( . ) – – – – outcomes from questionnaires core-om score a . ( . to . ) . ( . to . ) . ( . to . ) . ( . to . ) . ( . to . ) . ( . to . ) . core-om category – c healthy ( . ) ( . ) – ( ) ( . ) ( . ) low level ( . ) ( . ) ( ) – ( . ) ( . ) core-om number of missing questions ( to ) ( to ) ( to ) ( to ) ( to ) ( to ) –c wemwbs score a . ( . to ) ( to ) . ( to ) ( to ) ( to ) ( . to ) . connected to nature score a . ( . to . ) . ( . to . ) . ( . to . ) . ( . to . ) . ( . to ) ( . to . ) . continued d o i: . /p h r p u b l ic h e a l t h r e s e a r c h v o l . n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o . t h is w o rk w a s p ro d u ce d b y e lse y e t a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riva te re se a rch a n d stu d y a n d e xtra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro vid e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d ve rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls lib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e va lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n ive rsity o f s o u th a m p to n s cie n ce p a rk , s o u th a m p to n s o n s , u k . table baseline characteristics by site (continued) characteristic site p-value for interaction between co allocation and sitea,b (n = ) (n = ) (n = ) n cf n cf n cf no (n = ) yes (n = ) no (n = ) yes (n = ) no (n = ) yes (n = ) connecting with nature (nature relatedness scale) –c – least interconnected ( . ) ( . ) – – – ( ) ( . ) ( . ) ( . ) – – – ( . ) ( . ) ( . ) ( . ) ( ) – ( . ) ( . ) ( . ) ( . ) ( ) ( ) ( . ) ( . ) – most interconnected ( . ) ( . ) – ( ) ( . ) ( . ) health and lifestyle questions number of days of ≥ minutes’ physical activity in the last week b ( to ) ( to ) . ( to ) . ( to ) ( to ) ( to ) . used substances during the past weeks: yes ( . ) ( . ) ( ) ( ) ( . ) ( . ) – c number of substances used during the past weeks ( to ) ( to ) ( to ) ( to ) ( to ) ( to ) – c cannabis: yes ( . ) ( . ) (–) (–) ( . ) ( . ) – c amphetamines: yes ( . ) ( ) (–) (–) (–) (–) – c tranquillisers, sedatives and antidepressants: yes ( ) ( . ) (–) (–) ( . ) ( . ) – c heroin: yes – – – (–) (–) ( . ) ( ) – c methadone: yes ( ) ( ) (–) (–) ( . ) ( . ) – c crack: yes ( . ) ( ) (–) (–) ( ) ( . ) – c cocaine: yes ( ) ( ) (–) (–) – – – c anabolic steroids: yes – – – (–) (–) ( . ) ( ) – c a p p e n d ix n ih r jo u rn a ls lib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k characteristic site p-value for interaction between co allocation and sitea,b (n = ) (n = ) (n = ) n cf n cf n cf no (n = ) yes (n = ) no (n = ) yes (n = ) no (n = ) yes (n = ) number of days out of last drank alcohol b ( to ) ( to ) . ( to ) . ( to ) ( to ) ( to ) . smoker: yes ( . ) ( . ) ( ) ( ) ( . ) ( . ) – c number of cigarettes/roll-ups per day b ( to ) ( to ) . ( to ) ( to ) ( to ) ( to ) . ‘healthy foods are enjoyable’ – c strongly agree ( . ) ( ) – ( ) ( ) ( . ) agree ( ) ( . ) ( ) – ( ) ( . ) neither agree nor disagree ( ) ( . ) – – ( ) ( ) disagree – – – – ( ) ( . ) strongly disagree ( . ) ( . ) – – – – health and social service use number of health services (out of ) used during the past month b . ( to ) ( to ) ( to ) . ( to ) ( to ) . ( to ) . number of social services (out of four) used during the past month ( to ) ( to ) ( to ) ( to ) ( to ) ( to ) – c number of medications prescribed by a doctor or other health-care professional in the past month ( to ) ( to ) ( to ) ( to ) ( to ) ( to ) – c inpatient stay during the last month: yes ( ) ( . ) (–) (–) ( ) ( . ) – c number of inpatient night’s stay during the last month – ( to ) – – ( to ) ( to ) – c continued d o i: . /p h r p u b l ic h e a l t h r e s e a r c h v o l . n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o . t h is w o rk w a s p ro d u ce d b y e lse y e t a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riva te re se a rch a n d stu d y a n d e xtra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro vid e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d ve rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls lib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e va lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n ive rsity o f s o u th a m p to n s cie n ce p a rk , s o u th a m p to n s o n s , u k . table baseline characteristics by site (continued) characteristic site p-value for interaction between co allocation and site a,b (n = ) (n = ) (n = ) n cf n cf n cf no (n = ) yes (n = ) no (n = ) yes (n = ) no (n = ) yes (n = ) visited outpatients during the last month: yes ( . ) ( . ) (–) (–) ( . ) ( . ) –c number of outpatient visits during the last month ( to ) ( to ) – – ( to ) . ( to ) – c visited a&e during the last month: yes ( . ) ( . ) (–) (–) ( . ) ( . ) – c number of a&e visits during the last month ( to . ) ( to ) – – ( to ) ( to ) – c a&e, accident and emergency department. a interaction term tested from median regression. site excluded. b interaction term tested from negative binomial regression. site excluded. c too few subjects to conduct test in differences in co allocation by site. a p p e n d ix n ih r jo u rn a ls lib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k table baseline characteristics by follow-up characteristic valid number followed up meana or percentageb ( % ci) difference between follow-up difference in categories between follow-up, p-valuecno (n = ) yes (n = ) demographics cf: yes ( . ) ( . ) age (years) at recruitment a ( . to ) . ( to ) ( . to . ) gender: female ( . ) ( . ) . imd: quintiles within cohort – most deprived ( . ) ( . ) . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) – least deprived ( . ) ( . ) imd: english quintiles – most deprived ( . ) ( . ) . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) – least deprived ( . ) ( . ) employment status . full-time employed, self-employed, in education or training ( . ) ( . ) part-time employed or self-employed ( . ) ( . ) unemployed or unable to work ( ) ( . ) other ( . ) ( . ) ethnic group . white british ( . ) ( . ) white: other ( . ) ( . ) asian or asian british ( . ) ( . ) black or black british ( . ) ( . ) other or mixed ( . ) ( . ) probation type . crc ( . ) ( ) nps ( . ) ( ) continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table baseline characteristics by follow-up (continued) characteristic valid number followed up meana or percentageb ( % ci) difference between follow-up difference in categories between follow-up, p-valuecno (n = ) yes (n = ) outcomes from questionnaires core-om score a . ( . to . ) . ( . to . ) – . (– . to . ) core-om category . healthy ( ) ( . ) low level ( ) ( . ) core-om number of missing questions b ( to . ) ( to ) . (– . to . ) wemwbs score a ( to ) ( to ) (– . to . ) connected to nature score a . ( . to ) . ( . to . ) . (– . to . ) connecting with nature (nature relatedness scale) ( . ) ( . ) . – least interconnected ( . ) ( . ) ( . ) ( ) ( . ) ( . ) – most interconnected ( . ) ( . ) health and lifestyle questions number of days of ≥ minutes’ physical activity in the last week b ( to ) ( to ) . (– . to . ) used substances during the past weeks: yes ( . ) ( . ) . number of substances used during the past weeks b ( to ) ( to ) – . (– . to – . ) cannabis: yes ( . ) ( . ) . amphetamines: yes ( . ) ( . ) tranquillisers, sedatives and antidepressants: yes ( ) ( . ) . heroin: yes ( . ) ( . ) . methadone: yes ( ) ( . ) . crack: yes ( . ) ( ) . cocaine: yes ( ) ( . ) . anabolic steroids: yes ( . ) ( ) . number of days out of last drank alcohol b . ( to ) ( to ) . (– . to . ) smoker: yes ( . ) ( . ) . number of cigarettes/roll-ups per day b ( to ) ( to ) – . (– . to . ) appendix nihr journals library www.journalslibrary.nihr.ac.uk table baseline characteristics by follow-up (continued) characteristic valid number followed up meana or percentageb ( % ci) difference between follow-up difference in categories between follow-up, p-valuecno (n = ) yes (n = ) ‘healthy foods are enjoyable’ ( ) ( . ) . strongly agree agree ( . ) ( . ) neither agree nor disagree ( . ) ( . ) disagree ( . ) ( . ) strongly disagree ( ) ( . ) health and social service use number of health services (out of ) used during the past month b ( to ) ( to ) – . (– . to – . ) used gp during the past month: yes ( . ) ( . ) – d number of times used gp in the past month ( to ) ( to ) – d used practice or district nurse during the past month: yes ( . ) ( . ) – d number of times used practice or district nurse in the past month ( to . ) ( to ) – d used physiotherapist during the past month: yes ( . ) ( . ) – d number of times used physiotherapist in the past month . ( to ) ( to ) – d used occupational therapist during the past month: yes ( ) ( . ) – d number of times used occupational therapist in the past month – ( to ) – d used psychiatrist during the past month: yes ( . ) ( . ) – d number of times used psychiatrist in the past month ( to ) ( to ) – d used mental health counsellor during the past month: yes ( . ) ( . ) – d number of times used mental health counsellor in the past month ( . to . ) ( to ) – d used drug and alcohol worker during the past month: yes ( . ) ( . ) – d continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table baseline characteristics by follow-up (continued) characteristic valid number followed up meana or percentageb ( % ci) difference between follow-up difference in categories between follow-up, p-valuecno (n = ) yes (n = ) number of times used drug and alcohol worker in the past month ( to ) ( to ) – d used family planning service during the past month: yes ( . ) ( . ) – d number of times used family planning service in the past month ( to ) ( to ) – d used health trainer during the past month: yes ( . ) ( . ) – d number of times used health trainer in the past month – ( to ) – d used other health services during the past month: yes ( . ) ( . ) – d number of times used other health services in the past month ( to ) – – d number of social services (out of four) used during the past month b ( to ) ( to ) – . (– . to . ) used social worker during the past month: yes ( . ) ( . ) – d number of times used social worker in the past month ( to ) . ( . to . ) – d used helpline during the past month: yes ( ) ( ) – d number of times used helpline in the past month – – – d used family or patient support or self-help groups during the past month: yes ( . ) ( . ) – d number of times used family or patient support or self-help groups in the past month ( to ) ( to ) – d used any other social services during the past month: yes ( ) ( . ) – d number of times used any other social services in the past month . ( to ) ( to ) – d number of medications prescribed by a doctor or other health-care professional in the past month b ( to ) ( to ) . (– . to . ) appendix nihr journals library www.journalslibrary.nihr.ac.uk table baseline characteristics by follow-up (continued) characteristic valid number followed up meana or percentageb ( % ci) difference between follow-up difference in categories between follow-up, p-valuecno (n = ) yes (n = ) inpatient stay during the last month: yes ( . ) ( . ) . number of inpatient night’s stay during the last month . ( to ) ( to ) – d visited outpatients during the last month: yes ( . ) ( . ) number of outpatient visits during the last month . ( . to ) ( to ) – d visited a&e during the last month: yes ( . ) ( . ) number of a&e visits during the last month ( to . ) ( to . ) – d a&e, accident and emergency department. a mean difference (and % ci) calculated from median regression. b percentage difference (and % ci) calculated from negative binomial regression c difference in proportions of categories between co allocation calculated from fisher’s exact test. d too few subjects to conduct test in differences in co allocation. table follow-up characteristics by co allocation characteristic valid number cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) demographics days to follow-up since baseline a ( to ) ( to ) (– . to . ) hours left on co at follow-up a ( to ) . ( to ) – . (– . to . ) proportion of co left at follow-up a . ( . to . ) . ( . to . ) . (– . to . ) co changed during follow-up: yes ( . ) ( ) . employment status . full-time employed, self-employed, in education or training ( ) ( . ) part-time employed or self-employed ( . ) ( . ) unemployed or unable to work ( . ) ( ) other ( . ) ( . ) continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table follow-up characteristics by co allocation (continued) characteristic valid number cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) outcomes from questionnaires core-om score a . ( . to . ) . ( to . ) . ( . to . ) core-om category . healthy ( . ) ( ) low level ( . ) ( ) core-om number of missing questions b ( to ) ( to ) – . (– . to . ) wemwbs score a . ( to ) ( to ) – (– . to . ) connected to nature score a . ( . to . ) . ( . to . ) . (– . to . ) connecting with nature (nature relatedness scale) . – least interconnected ( . ) ( . ) ( . ) ( ) ( . ) ( . ) ( . ) ( . ) – most interconnected ( . ) ( . ) health and lifestyle questions number of days of ≥ minutes’ physical activity in the last week b ( to ) ( to ) – . (– . to . ) used substances during the past weeks: yes ( . ) ( . ) < . number of substances used during the past weeks b ( to ) ( to ) . ( . to . ) cannabis: yes ( . ) ( ) – d amphetamines: yes ( ) ( ) – d tranquillisers sedatives and antidepressants: yes ( . ) ( ) – d heroin: yes ( ) ( ) – d methadone: yes ( ) ( ) – d crack: yes ( ) ( ) – d cocaine: yes ( ) ( . ) – d anabolic steroids: yes ( ) ( . ) – d appendix nihr journals library www.journalslibrary.nihr.ac.uk table follow-up characteristics by co allocation (continued) characteristic valid number cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) number of days out of last drank alcohol b ( to ) . ( to ) . (– . to . ) smoker: yes ( . ) ( . ) . number of cigarettes/ roll-ups per day b ( to ) ( to ) . (– . to . ) ‘healthy foods are enjoyable’ . strongly agree ( . ) ( . ) agree ( . ) ( . ) neither agree nor disagree ( . ) ( . ) disagree ( . ) ( . ) strongly disagree ( ) ( . ) health and social service use number of health services (out of ) used during the past month ( to ) ( to ) – d used gp during the past month: yes ( . ) ( ) – d number of times used gp in the past month ( to ) ( to ) – d used practice or district nurse during the past month: yes ( . ) ( ) – d number of times used practice or district nurse in the past month ( to ) – – d used physiotherapist during the past month: yes ( . ) ( . ) – d number of times used physiotherapist in the past month ( to ) ( to ) – d used occupational therapist during the past month: yes ( ) ( ) – d number of times used occupational therapist in the past month – – – d used psychiatrist during the past month: yes ( ) ( . ) – d continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table follow-up characteristics by co allocation (continued) characteristic valid number cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) number of times used psychiatrist in the past month ( to ) – – d used mental health counsellor during the past month: yes ( . ) ( . ) – d number of times used mental health counsellor in the past month ( to ) ( to ) – d used drug and alcohol worker during the past month: yes ( . ) ( ) – d number of times used drug and alcohol worker in the past month ( to ) ( to ) – d used family planning service during the past month: yes ( ) ( ) – d number of times used family planning service in the past month – – – d used health trainer during the past month: yes ( . ) ( . ) – d number of times used health trainer in the past month . ( to ) – – d used other health services during the past month: yes ( . ) ( ) – d number of times used other health services in the past month – – – d number of social services (out of four) used during the past month ( to ) ( to ) – d used social worker during the past month: yes ( . ) ( . ) – d number of times used social worker in the past month ( to ) ( to ) – d used helpline during the past month: yes ( ) ( ) – d appendix nihr journals library www.journalslibrary.nihr.ac.uk table follow-up characteristics by co allocation (continued) characteristic valid number cf (all sites, n = ) meana or %b ( % ci) difference between co allocation difference in categories between co allocation, p-valuecno (n = ) yes (n = ) number of times used helpline in the past month – – – d used family or patient support or self-help groups during the past month: yes ( . ) ( ) – d number of times used family or patient support or self-help groups in the past month ( to ) – – d used any other social services during the past month: yes ( . ) ( . ) – d number of times used any other social services in the past month ( to ) ( to ) – d number of medications prescribed by a doctor or other health-care professional in the past month ( to ) ( to ) – d inpatient stay during the last month: yes ( ) ( ) – d number of inpatient night’s stay during the last month – – – d visited outpatients during the last month: yes ( . ) ( . ) – d number of outpatient visits during the last month ( to ) ( to ) – d visited a&e during the last month: yes ( . ) ( . ) – d number of a&e visits during the last month ( to ) – – d a&e, accident and emergency department. a mean difference (and % ci) calculated from median regression. b percentage difference (and % ci) calculated from negative binomial regression. c difference in proportions of categories between co allocation calculated from fisher’s exact test. d too few subjects to conduct test in differences in co allocation. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table follow-up questionnaire responses by co allocation question number and cf allocation valid number response, n (%) not at all only occasionally sometimes often most of the time core-om no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) appendix nihr journals library www.journalslibrary.nihr.ac.uk table follow-up questionnaire responses by co allocation (continued) question number and cf allocation valid number response, n (%) not at all only occasionally sometimes often most of the time no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table follow-up questionnaire responses by co allocation (continued) question number and cf allocation valid number response, n (%) not at all only occasionally sometimes often most of the time no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) appendix nihr journals library www.journalslibrary.nihr.ac.uk table follow-up questionnaire responses by co allocation (continued) response none of the time rarely some of the time often all of the time wemwbs no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) continued doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. table follow-up questionnaire responses by co allocation (continued) response none of the time rarely some of the time often all of the time no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) valid number response, n (%) disagree strongly disagree a little neither agree or disagree agree a little agree strongly connecting with nature no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) no ( . ) ( . ) ( . ) ( . ) ( . ) yes ( . ) ( . ) ( . ) ( . ) ( . ) please see the corresponding questions in appendix . appendix nihr journals library www.journalslibrary.nihr.ac.uk appendix search strategy for cost-effectiveness systematic review applied social sciences index and abstracts (via proquest) date range searched: to current. search strategy (((su.exact(‘young adult offenders’) or su.exact(‘fine defaulters’) or su.exact(‘remand offenders’) or su.exact(‘recidivists’) or su.exact(‘violent offenders’) or su.exact(‘ex-offenders’) or su.exact (‘offenders’) or su.exact(‘murderers’) or su.exact(‘prisoners’) or su.exact(‘drunken offenders’) or su.exact(‘probationers’) or su.exact(‘sex offenders’) or su.exact(‘dangerous offenders’) or su.exact(‘suspected offenders’)) or (convict or convicts or convicted or offender* or reoffender* or criminal* or prisoner* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ex offender*’ or parole or correctional)) and ((su.exact(‘cost containment’) or su.exact(‘social costs’) or su.exact(‘functional cost analysis’) or su.exact(‘cost analysis’) or su.exact(‘cost effectiveness’) or su.exact(‘health costs’) or su.exact (‘cost benefit analysis’) or su.exact(‘unemployment benefit’) or su.exact(‘cost effective analysis’) or su.exact.explode(‘family fund’ or ‘food stamps’ or ‘income support’ or ‘nonincome tested transfers’ or ‘supplementary benefits’ or ‘welfare benefits’)) or (((polic* or crime or criminal* or violence or correctional*) n/ (cost or costs or economic*)) or ((‘vocational training’) n/ (cost or costs or economic*) or (social or housing or health or societ* or communit*) n/ (cost or costs or economic*))) or ((housing or welfare or state or income or family or child or entitle*) near/ (support or benefit* or allowance)) or ti(cost or costs or economic*))) not (su.exact(‘violent juvenile offenders’) or su.exact(‘suspected juvenile offenders’) or su.exact (‘juvenile offenders’) or su.exact(‘children’) or su.exact(‘violent adolescents’) or su.exact(‘adolescents’)) cumulative index to nursing and allied health literature: via ebscohost databases date range searched: january to current. search strategy s s not s s s not s s ( (mh ‘child+’) or (mh ‘adolescence+’) or (mh ‘infant+’) or (mh ‘minors (legal)’) ) and (mh ‘adult+’) s (mh ‘child+’) or (mh ‘adolescence+’) or (mh ‘infant+’) or (mh ‘minors (legal)’) s s and s doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. s s or s or s or s or s or s or s or s or s s (mh ‘job re-entry’) s (mh ‘employment, supported’) or (mh ‘rehabilitation, vocational’) s (mh ‘public assistance+’) or (mm ‘insurance, health’) s (mm ‘costs and cost analysis+’) s s and s s (mm ‘economics+’) s (mh ‘social welfare’) or (mh ‘socioeconomic factors’) s tx health n (cost or costs) s tx (housing or welfare or state or ‘low income’ or ‘job seeker*’ or family or child or entitle*) w (support or benefit* or allowance*) s tx ( (societ* or ‘social care’ or communit*) n (cost or costs) ) or tx ( (‘criminal activit*’ or crime or violence or polic* or correctional) n (cost or costs) ) or tx ( (unemploy* or ‘vocational training’ or employment or ‘job seeker*’) n (cost or costs) ) s ti cost or costs or economic* s s or s or s or s s (mh ‘mentally ill offenders’) or (mh ‘public offenders’) or (mh ‘repeat offenders’) or (mh ‘sex offenders’) s (mh ‘correctional facilities’) s (mh ‘prisoners’) s tx convict or convicts or convicted or offender* or reoffend* or criminal* or prisoner* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ex offender*’ or parole or recidiv* the campbell library date range searched: january to current. search strategy . cost* or economic* in title or keywords limited to crime and justice coordinating group = hit . prison* or crime or criminal* or offender* or reoffend* or convict* or inmate* or detainee* or cellmate* or incarcerated or felon* or probation* or parole or recidiv* or correctional in title or keywords limited to social welfare coordinating group = hits appendix nihr journals library www.journalslibrary.nihr.ac.uk criminal justice abstracts: via ebscohost databases date range searched: january to current. search strategy s s or s ( ) s s and s ( ) s (zu ‘prisoners’) or (zu ‘criminals’) or (zu ‘prisons’) ( , ) s (zu ‘cost analysis’) or (zu ‘cost control’) or (zu ‘cost effectiveness’) ( ) s s and s ( ) s s or s or s ( ) s ti (housing or welfare or state or income or family or child or entitle*) w (support or benefit* or allowance) ( ) s ti (economic n (analysis or impact or burden or evaluation or model or factors or perspective*)) ( ) s ti (cost or costs or economics) ( ) s tx (convicts or convicted or offender* or reoffend* or criminals or criminal or prisoner* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ex offender*’ or parole or recidiv*) ( , ) embase classic and embase date range searched: to december . search strategy . (cost or costs or economic*).ti. ( , ) . ((societ* or ‘social care’ or communit*) adj (cost or costs)).tw. ( ) . ((‘criminal activit*’ or crime or violence or polic* or correctional) adj (cost or costs)).tw. ( ) . ((unemploy* or ‘vocational training’ or employment or ‘job seeker*’) adj (cost or costs)).tw. ( ) . ((housing or welfare or state or ‘low income’ or ‘job seeker*’ or family or child or entitle*) adj (support or benefit* or allowance*)).tw. ( ) . (health adj (cost or costs)).tw. ( , ) . or/ - [societal and health costs textwords] ( , ) . exp *social problem/ or social care/ or *caregiver support/ or *social insurance/ or *social security/ or *social support/ ( , ) . exp *economic aspect/ ( , ) . (cost or costs).tw. ( , ) . and ( or ) ( , ) . return to work/ ( ) . *vocational rehabilitation/ ( ) . exp *‘health care cost’/ ( , ) . exp *economic evaluation/ ( , ) doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. . or/ - [societal and health costs mesh] ( , ) . or [societal and health costs] ( , ) . exp *prisoners/ or exp offender/ or exp *prison/ ( , ) . (convict or convicts or convicted or offender* or reoffend* or criminal or criminals or prisoner* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ex offender*’ or parole or recidiv*).tw. ( , ) . correctional.tw. ( ) . or/ - [offenders] ( , ) . and ( ) . (exp adolescent/ or exp child/ or exp newborn/) not ((exp adolescent/ or exp child/ or exp newborn/) and (adult/ or exp aged/ or middle aged/)) ( , , ) . not ( ) health management information consortium date range searched: to current. search strategy . (convict or convicts or convicted or offender* or reoffend* or criminal* or prison* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ex offender*’ or parole or recidiv*).tw. ( ) . correctional.tw. ( ) . or [offenders] ( ) . (cost or costs or economic*).ti. ( ) . ((societ* or ‘social care’ or communit*) adj (cost or costs)).tw. ( ) . ((‘criminal activit*’ or crime or violence or polic* or correctional) adj (cost or costs)).tw. ( ) . ((unemploy* or ‘vocational training’ or employment or ‘job seeker*’) adj (cost or costs)).tw. ( ) . ((housing or welfare or state or ‘low income’ or ‘job seeker*’ or family or child or entitle*) adj (support or benefit* or allowance*)).tw. ( ) . (health adj (cost or costs)).tw. ( ) . or/ - medline (via ovid) date range searched: to week november . search strategy . (convict or convicts or convicted or offender* or reoffend* or criminal* or prisoner* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ex offender*’ or parole or recidiv*).tw. ( , ) . correctional.tw. ( ) . prisoners/ or criminals/ ( , ) . exp prisons/ ( ) . or/ - [offenders] ( , ) . exp *economics/ ( , ) . exp *socioeconomic factors/ ( , ) . and ( , ) . exp public assistance/ ( , ) . employment, supported/ or return to work/ ( ) appendix nihr journals library www.journalslibrary.nihr.ac.uk . vocational education/ ( ) . exp health care costs/ ( , ) . exp *‘costs and cost analysis’/ ( , ) . or/ - [societal and health costs mesh] ( , ) . (cost or costs or economic*).ti. ( , ) . ((societ* or ‘social care’ or communit*) adj (cost or costs)).tw. ( ) . ((‘criminal activit*’ or crime or violence or polic* or correctional) adj (cost or costs)).tw. ( ) . ((unemploy* or ‘vocational training’ or employment or ‘job seeker*’) adj (cost or costs)).tw. ( ) . ((housing or welfare or state or ‘low income’ or ‘job seeker*’ or family or child or entitle*) adj (support or benefit* or allowance*)).tw. ( ) . (health adj (cost or costs)).tw. ( , ) . or/ - [societal and health costs textwords] ( , ) . or ( , ) . (adolescent/ or exp child/ or exp infant/) not (exp adult/ and (adolescent/ or exp adult/ or exp child/ or exp infant/)) ( , , ) . ( and ) not [health and society offenders costs, children excluded] ( ) medline in-process & other non-indexed citations (via ovid) date range searched: december . search strategy . (convict or convicts or convicted or offender* or reoffend* or criminal* or prison* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ex offender*’ or parole or recidiv*).tw. ( ) . correctional.tw. ( ) . or [offenders] ( ) . (cost or costs or economic*).ti. ( ) . ((societ* or ‘social care’ or communit*) adj (cost or costs)).tw. ( ) . ((‘criminal activit*’ or crime or violence or polic* or correctional) adj (cost or costs)).tw. ( ) . ((unemploy* or ‘vocational training’ or employment or ‘job seeker*’) adj (cost or costs)).tw. ( ) . ((housing or welfare or state or ‘low income’ or ‘job seeker*’ or family or child or entitle*) adj (support or benefit* or allowance*)).tw. ( ) . (health adj (cost or costs)).tw. ( ) . or/ - [societal and health costs textwords] ( ) . and ( ) national criminal justice reference service abstracts database (via proquest) date range searched: january to current. search strategy ((((ti(cost or costs or economics) or ti((economic near/ (analysis or impact or burden or evaluation or model or factors or perspective*)))) or ti((housing or welfare or state or income or family or child or entitle*) near/ (support or benefit* or allowance))) and (convicts or convicted or offender* or reoffender* or criminal or criminals or prisoner* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probationer* or ‘ex offender*’ or correctional)) or doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. ((su.exact(‘cost analysis ( )’ or ‘operating costs ( )’ or ‘law enforcement costs ( )’ or ‘crime costs ( )’ or ‘evaluation costs ( )’ or ‘court costs ( )’ or ‘murder trial costs ( )’ or ‘corrections costs ( )’ or ‘prison costs ( )’ or ‘probation costs ( )’ or ‘cost effectiveness analysis ( )’ or ‘business crime costs ( )’ or ‘medical costs ( )’ or ‘costs ( )’ or ‘cost benefit analysis ( )’) or su.exact(‘economic analysis of crime ( )’ or ‘economic impact of prisons ( )’ or ‘economic analysis ( )’ or ‘socioeconomic impact of terrorism ( )’)) and su.exact(‘offender profiles ( )’ or ‘first offenders ( )’ or ‘offender supervision ( )’ or ‘federal prisoners ( )’ or ‘female offenders ( )’ or ‘drug offenders ( )’ or ‘offender mental health services ( )’ or ‘elderly offenders ( )’ or ‘ex-offender employment ( )’ or ‘convicted offender incapacitation ( )’ or ‘ex-offenders ( )’ or ‘barriers to ex- offender employment ( )’ or ‘offender financial assistance ( )’ or ‘foreign offenders ( )’ or ‘electronic monitoring of offenders ( )’ or ‘drunk offenders ( )’ or ‘female sex offenders ( )’ or ‘offender tracking systems ( )’ or ‘offenders college-credit-programs ( )’ or ‘offender participatn in rehab goals ( )’ or ‘habitual offenders ( )’ or ‘elderly sex offenders ( )’ or ‘offenders ( )’ or ‘homeless offenders ( )’ or ‘adult offenders ( )’ or ‘prisoner reentry ( )’ or ‘offender reclassification ( )’ or ‘offender participation programs ( )’))) not su(juvenile*) nhs economic evaluation database (the cochrane library via wiley online library) date range searched: issue of , october . search strategy # . mesh descriptor: [prisoners] this term only # . mesh descriptor: [criminals] explode all trees # . mesh descriptor: [crime] explode all trees # . convict or convicts or convicted or offender* or reoffend* or criminal* or prisoner* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ex offender*’ or parole or recidiv* or correctional # . mesh descriptor: [prisons] explode all trees # . # or # or # or # or # psycinfo date range searched: to week december . search strategy . (convict or convicts or convicted or offender* or reoffend* or criminal* or prisoner* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ex offender*’ or parole).tw. ( , ) . correctional.tw. ( ) . prisoners/ or criminals/ or exp prisons/ or exp mentally ill offenders/ ( , ) appendix nihr journals library www.journalslibrary.nihr.ac.uk . or/ - [offenders] ( , ) . (cost or costs or economic*).ti. ( , ) . (recidiv* and (cost or costs or economic*)).tw. ( ) . ((societ* or ‘social care’ or communit*) adj (cost or costs)).tw. ( ) . ((‘criminal activit*’ or crime or violence or polic* or correctional) adj (cost or costs)).tw. ( ) . ((unemploy* or ‘vocational training’ or employment or ‘job seeker*’) adj (cost or costs)).tw. ( ) . ((housing or welfare or state or ‘low income’ or ‘job seeker*’ or family or child or entitle*) adj (support or benefit* or allowance*)).tw. ( , ) . (health adj (cost or costs)).tw. ( ) . or/ - [societal and health costs textwords] ( , ) . social issues/ or exp homeless/ or exp social discrimination/ or exp social equality/ or exp social integration/ or exp unemployment/ or exp social programs/ ( , ) . ‘welfare services (government)’/ or community welfare services/ ( ) . government programs/ or social security/ or shelters/ or exp social services/ ( , ) . vocational rehabilitation/ or supported employment/ or rehabilitation counseling/ ( ) . housing/ or assisted living/ or group homes/ or shelters/ ( ) . or or or or ( , ) . exp *economics/ ( , ) . and [societal cost mesh] ( ) . health care costs/ or exp ‘costs and cost analysis’/ ( , ) . or or [societal health costs] ( , ) . juvenile delinquency/ or juvenile gangs/ or juvenile justice/ or predelinquent youth/ or adolescent psychiatry/ or adolescent psychology/ or adolescent psychopathology/ or adolescent psychotherapy/ ( , ) . and ( ) . not ( ) research papers in economics ideas date range searched: to current. search strategy (prison | convict | criminal | offender | reoffend | probationer | incarcerated | correctional | crime) + (cost | economic) in title sociological abstracts (via proquest) date range searched: january . search strategy (((convict or convicts or convicted or offender* or reoffender* or criminal* or prisoner* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ex offender*’ or parole or correctional) and ((((polic* or crime or criminal* or violence or correctional*) n/ (cost or costs)) or ((‘vocational training’) n/ (cost or costs ) or (social or housing or health or societ* or communit*) n/ (cost or costs)) or ((housing or welfare or state or income or family or child or entitle*) n/ (support or benefit* or allowance))) or ti(cost or costs or economics))) or ti(economic near/ (analysis or impact or burden or evaluation or model or factors or perspective*)))) or su.exact(‘prisoners’) and (su.exact(‘cost- doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. benefit analysis’) or su.exact(‘cost containment’) or su.exact(‘housing costs’) or su.exact(‘costs’) or su.exact(‘benefits’) or su.exact(‘social security’) or su.exact(‘health care costs’)))) not (su.exact(‘juvenile correctional institutions’) or su.exact(‘juvenile/juveniles’) or su.exact (‘juvenile offenders’) or su.exact(‘juvenile delinquency’) or su.exact(‘juvenile courts’) or su.exact (‘children’) or su.exact(‘adolescents’) or su.exact(‘juvenile justice’)) social services abstracts (proquest csa) date range searched: to current. same search strategy as sociological abstracts (via proquest). web of science conference proceedings citation index-science, web of science conference proceedings citation index – social science & humanities and web of science (thomson reuters) date ranges searched: to current. date searched: december . search strategy # . topic=(convict or convicts or convicted or offender* or reoffend* or criminal* or prisoner* or inmate* or detainee* or cellmate* or incarcerated* or felon* or probation or probationer* or ‘ ex offender*’ or parole or recidiv* or correctional) ( ) # . topic=((polic* or crime or criminal* or violence or correctional*) near/ (cost or costs)) or topic= ((‘ vocational training‘ ) near/ (cost or costs )) or topic= ((social or housing or health or societ* or communit*) near/ (cost or costs)) ( ) # . topic=((housing or welfare or state or income or family or child or entitle*) near/ (support or benefit* or allowance)) or title=((cost or costs or economics)) or title=((economic near/ (analysis or impact or burden or evaluation or model or factors or perspective*))) ( , ) # . # or # ( , ) # . # and # ( ) appendix nihr journals library www.journalslibrary.nihr.ac.uk appendix topic guides and coding frame from the qualitative study service users topic guide . how are you finding things here/how did you find it on the farm? . looking back to before you were convicted, how were things for you then? . (tease out; personal/quality of life; social life/work, housing, emotions, attitudes, lifestyles.) . what were your initial impressions of the care farm? . (expectations, could include why they thought they were sent here/past experience of working with nature.) . tell me about the things (activities) you have done here? . (tease out activities, working with nature, friendships, mentoring, skills, respect, responsibilities, choices, rewards, general behaviours of people on farm, purposefulness, outdoors work vs. indoors.) . how did you get on with the staff at the farm? . (about relationship.) . what do you think about those (activities) (if doesn’t expand on question )? . what’s been good or not so good? or question below . . . . what do you think about the general idea of people coming to a care farm as part of a community order . (teasing out things to do with time out, being away from the public, comparing with other orders – experience or perception, choice, nature element) . if you look back what changed for you since coming to the farm? care farmers topic guide l what do you think the care farm is all about (what problem is it trying to address), what is it hoping to achieve? discuss how the care farm contributes to rehabilitation ¢ (thinking about seven pathways to reoffending: ( ) education; ( ) training and employment; ( ) health; ( ) drugs; ( ) alcohol; ( ) finance, benefits and debt; and ( ) attitude, thinking and behaviour) – where do care farms fit in? l in what way do the activities provided on-site support that aim? l with the activities provided on-site how do you decide who does what? ¢ (looking at extent to which tasks are allocated as determined by farm requirements or whether or not there is a choice, use of existing skills vs. developing new skills, seasonally dependent.) l what changes, if any, do you see in the people serving community orders that come here? what do you put that down to? ¢ (link with increased environmental awareness.) l what factors might influence the care farms ability to create change in service users? l tell me about your relationship with the offenders on the farm? l what do you think this farm offers as part of a community order that other placements perhaps don’t? (nature element, variety, skills enhancement.) doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. probation staff topic guide l explain the process by which you allocate a service user to a type of project (free agency placement/ larger project/cp supervision) to serve their community order? l how do you balance the various factors that influence decisions? l what does the term ‘rehabilitation’ mean to you in this environment? ¢ (dig deeper to get beyond stopping reoffending, think about desistance theory; link this back to the care farm; see if they mention any of the green theory elements – could prompt here.) l how do the various projects offer opportunities for rehabilitation (exclude alcohol, addiction treatment and education, training and employments)? how does this fit with service user potential for rehabilitation? who needs rehabilitation? (with particular reference to the care farm.) have any of your views about this changed with the privatisation? l what sort of projects fit with the punishment element of a community order? what are your views on the role of punishments? l how do care farms or nature-based activities fit with community orders either as a rehabilitation/ punishment? why was the care farm placed where it was within the order? coding frame used in the qualitative analysis table shows a copy of the coding framework used in the qualitative analysis of the care farmers and service users interviews. table qualitative coding framework theme or code number of interviews containing this theme or code number of times coded a new identity enjoying the work feeling the change renewed relationships and social networks allocation to co employment status gender geographic location and transportation information acquisition or process mental or physical health offence animals believing in it cf vs. other cos developing relationships belonging refusal to belong appendix nihr journals library www.journalslibrary.nihr.ac.uk table qualitative coding framework (continued) theme or code number of interviews containing this theme or code number of times coded easy environment – the setting judgement-free atmosphere the outdoors and getting away lack of choice feeling powerless presence or absence of choice about activities on the farm presence or absence of choice about cos looking back negative aspects of being on the cf people authority figures other service users – group membership others on the cf personal growth sense of worth and achievement skills, knowledge and employment rehabilitation vs. punishment structure of the cf capacity of cf components or activities of the cf funding issues faced by cfs selection of service users vision of cf or motivation for setting up cf the work bold text represents themes that are qualitative. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. appendix example electronic search: medline (via ovid) date range searched: to week november . search strategy . (care adj (farm or farms or farming or ranch or ranches)).tw. ( ) . (rehab* adj (farm or farms or farming or ranch or ranches)).tw. ( ) . (‘social farm*’ or ‘therapeutic farm*’).tw. ( ) . or/ - [care/rehab farms or ranches] ( ) . (farm* or farms* or ranch or ranches or land).tw. ( , ) . (agricultur* adj (setting* or environment* or facility or facilities)).tw. ( ) . (aquacultur* or hydroponic* or ‘market garden*’ or ‘horticult* unit*’ or ‘horticult* garden*’ or (small adj holding*) or (nurser* adj garden*)).tw. ( ) . agriculture/ and *‘delivery of health care’/ ( ) . ‘green space*’.tw. ( ) . or/ - [farms] ( , ) . exp nature/ ( ) . (nature* adj (therap* or intervention* or rehabilitation)).tw. ( ) . (green adj (care or exercise)).tw. ( ) . ((heal or healing or sensory) adj garden*).tw. ( ) . exp horticultural therapy/ ( ) . exp animal assisted therapy/ or exp equine-assisted therapy/ ( ) . ‘animal* assisted’.tw. ( ) . ((riding or equine) adj (therap* or intervention* or rehabilitation)).tw. ( ) . (horticultur* adj (treatment* or ‘vocation* program*’ or therap* or intervention* or rehabilitation)).tw. ( ) . (forest adj (therap* or intervention*)).tw. ( ) . onotherap*.tw. ( ) . hippotherap*.tw. ( ) . ecotherap*.tw. ( ) . social horticultur*.tw. ( ) . or/ - [specific agric/gardening therapies] ( ) . exp agriculture/ ( , ) . exp *gardening/ ( ) . (garden* or horticultur*).tw. ( ) . ((cart or carts) adj (drive or driving)).tw. ( ) . craft*.tw. ( ) . woodwork*.tw. ( ) . (woodland* adj (restor* or manage*)).tw. ( ) . exp ‘conservation of natural resources’/ ( , ) . conservation*.tw. ( , ) . (paddock* adj maintenance).tw. ( ) . farm mechanics.tw. ( ) . ((bird* or nature) adj watch*).tw. ( ) . (apiar* or beekeep* or ‘bee keep*’ or ‘bee yard*’ or beehive*).tw. ( ) . or/ - [agriculture, gardening, countryside activities] ( , ) doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. . rehabilitation/ or ‘activities of daily living’/ or animal assisted therapy/ or equine-assisted therapy/ or art therapy/ or bibliotherapy/ or dance therapy/ or early ambulation/ or exercise therapy/ or motion therapy, continuous passive/ or muscle stretching exercises/ or plyometric exercise/ or resistance training/ or occupational therapy/ or recreation therapy/ or rehabilitation, vocational/ ( , ) . rehabilitation centers/ ( ) . rh.fs. ( , ) . correctional.tw. ( ) . (therapy or therapies).tw. ( , , ) . th.fs. ( , , ) . or/ - [rehabilitation or therapy] ( , , ) . and [agric/garden/countryside rehab or therapy] ( ) . or [all agric related therapies or rehab] ( ) . and [farms and agric related therapies or rehab] ( ) . or [care farms or agric therapy/rehab at farm setting] ( ) . exp horticultural therapy/ or ‘re-entry garden*’.tw. [feedback from campbell, with less emphasis on farm or agri setting] ( ) . or or [care farms or agric therapy/rehab at farm setting] ( ) . exp veterinary medicine/ or exp animal experimentation/ ( , ) . exp animals/ not (exp animals/ and exp humans/) ( , , ) . or [items to remove] ( , , ) . not ( ) appendix nihr journals library www.journalslibrary.nihr.ac.uk appendix questionnaires: clinical outcome in routine evaluation–outcome measure, warwick–edinburgh mental health and well-being scale, service use and connectedness to nature scale the eeco study health & wellbeing in people with a community order how to fill in this questionnaire . if you can, please answer all the questions. . ask the researcher if you need help with any of the questions. . when you have finished please put the questionnaire in the envelope provided and hand back to the researcher. please note: any information provided by you will be kept strictly confidential we will not share your information with anyone outside of the university of leeds research team. only information that you might hurt yourself will be passed to the probation officer if you have any queries regarding the study, please contact: jenni murray on doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. section . connecting with nature please one box for each statement below statements: disagree strongly disagree a little neither agree or disagree agree a little agree strongly . my ideal holiday spot would be a remote, wilderness area. . i always think about how my actions affect the environment. . my connection to nature and the environment is a part of my spirituality. . i take notice of wildlife wherever i am. . my relationship to nature is an important part of who i am. . i feel very connected to all living things and the earth how interconnected are you with nature? please circle the picture below which best describes your relationship with the natural environment. appendix nihr journals library www.journalslibrary.nihr.ac.uk section . about your mental well-being below are some statements about feelings and thoughts. please tick the box that best describes your experience of each over the last weeks statements none of the time rarely some of the time often all of the time i’ve been feeling optimistic about the future i’ve been feeling useful i’ve been feeling relaxed i’ve been feeling interested in other people i’ve had energy to spare i’ve been dealing with problems well i’ve been thinking clearly i’ve been feeling good about myself i’ve been feeling close to other people i’ve been feeling confident i’ve been able to make up my own mind about things i’ve been feeling loved i’ve been interested in new things i’ve been feeling cheerful warwick-edinburgh mental well-being scale (wemwbs) © nhs health scotland, university of warwick and university of edinburgh, , all rights reserved. doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. section . about how you feel important – please read this first this form has statements about how you have been over the last week. please read each statement and think how often you felt that way last week. then tick the box which is closest to this. please use a dark pen (not pencil) and tick clearly within the boxes over the last week n o t a t a ll o n ly o c c a s io n a ll y s o m e ti m e s o ft e n m o s t o f th e t im e i have felt terribly alone and isolated i have felt tense, anxious or nervous i have felt i have someone to turn to for support when needed i have felt ok about myself i have felt totally lacking in energy and enthusiasm i have been physically violent to others i have felt able to cope when things go wrong i have been troubled by aches, pains or other physical problems appendix nihr journals library www.journalslibrary.nihr.ac.uk over the last week n o t a t a ll o n ly o c c a s io n a ll y s o m e ti m e s o ft e n m o s t o f th e t im e i have thought of hurting myself talking to people has felt too much for me tension and anxiety have prevented me from doing important things i have been happy with the things i have done i have been disturbed by unwanted thoughts and feelings i have felt like crying i have felt panic or terror i made plans to end my life i have felt overwhelmed by my problems i have had difficulty getting to sleep or staying asleep i have felt warmth or affection for someone my problems have been impossible to put to one side i have been able to do most things i needed to doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. over the last week n o t a t a ll o n ly o c c a s io n a ll y s o m e ti m e s o ft e n m o s t o f th e t im e i have threatened or intimidated another person i have felt despairing or hopeless i have thought it would be better if i were dead i have felt criticised by other people i have thought i have no friends i have felt unhappy unwanted images or memories have been distressing me i have been irritable when with other people i have thought i am to blame for my problems and difficulties i have felt optimistic about my future i have achieved the things i wanted to i have felt humiliated or shamed by other people i have hurt myself physically or taken dangerous risks with my appendix nihr journals library www.journalslibrary.nihr.ac.uk over the last week n o t a t a ll o n ly o c c a s io n a ll y s o m e ti m e s o ft e n m o s t o f th e t im e health © core system trust: http:www.coreims.co.uk/copyright.pdf supported by www.coreims.co.uk doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. section . about things to do with your health . in the past week, how many days have you done minutes or more of physical activity, which was enough to raise your breathing rate? physical activity can include a variety of activities such as walking, housework or structured exercise in a class or gym. tick only one box . . one day of mins physical activity yes . . two days of mins physical activity yes . . three days of mins physical activity yes . . four days of mins physical activity yes . . five days of mins physical activity yes . . six days of mins physical activity yes . . seven days of mins physical activity yes . . no physical activity of mins or more yes . which substances have you used during the past weeks? please tick all that apply: . . solvents (glue, tippex, lighter fuel) yes no . . cannabis (marijuana, dope, pot, blow) yes no . . ecstasy (e, dennis the menace) yes no . . amphetamines (speed, uppers, whiz,) yes no . . lsd (acid, tabs, trips) yes no . . poppers (amyl nitrates, liquid gold) yes no . . tranquillisers sedatives and antidepressants yes no . . heroin (morphine, smack, skag,) yes no . . magic mushrooms (mushies, psilocybin) yes no . . methadone (phy, meth) yes no appendix nihr journals library www.journalslibrary.nihr.ac.uk . . crack (rock, sand, stone, pebbles) yes no . . cocaine (coke, charlie) yes no . . anabolic steroids yes no . . nubain yes no . . none yes no . . don’t know yes no . during the last weeks, how often have you used the substances you just mentioned? tick one box only. . . daily / almost daily yes . . several times a week yes . . at least once a week yes . . less often than once a week yes . . don’t know yes . on how many days out of the last seven did you have an alcoholic drink? tick one box only. . . one day in the last week yes . . two days in the last week yes . . three days in the last week yes . . four days in the last week yes . . five days in the last week yes . . six days of in the last week yes . . seven days in the last week yes . . i have not drunk alcohol in the last days yes . . i never drink alcohol yes doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. . do you smoke cigarettes at all nowadays? tick only one box. . . yes yes . . no yes . . don’t know yes . if you do smoke, how many do you normally smoke per day? please write the number of cigarettes/ roll ups per day: . ‘healthy foods are enjoyable’ - how strongly do you agree or disagree? please tick one box. . . strongly agree yes . . agree yes . . neither agree nor disagree yes . . disagree yes . . strongly disagree yes . have you used any of the following services during the past one month? health services have you used the service in the last month? total number of times in the last month? a) gp yes no b) practice or district nurse yes no c) physiotherapist yes no d) occupational therapist yes no e) psychiatrist yes no f) mental health counsellor yes no appendix nihr journals library www.journalslibrary.nihr.ac.uk g) drug and alcohol worker yes no h) family planning service yes no i) health trainer yes no j) any other health service not including hospital visits (e.g. nhs direct) health service: . yes no social services have you used the service in the last month? total number of times in the last month? a) social worker yes no b) help-line (e.g.samaritans) yes no c) family or patient support or self help groups yes no d) any other social services yes no . in the table below, please note any medications that you have been prescribed by a doctor or other health professional in the past month. medications number of times daily number of days used . have you used any of the following hospital services during the last month? hospital stay in the last month have you used the service? total number of nights in the last month? doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. hospital in-patient stay (staying in hospital overnight) yes no number of nights hospital visits in the last month have you used the service? total number of visits? hospital out-patient clinic (doctor visits, scans, etc.) yes no visits hospital accident and emergency (a&e) department yes no visits . what is your current employment or training situation? activity during the day tick one category that best describes your situation now a) in an apprenticeship (e.g to be a plumber, hair-dresser, etc.) , government supported training b) employed full time c) employed part time d) self-employed e) employed but on sick leave f) unpaid employment (e.g. voluntary job) g) unemployed appendix nihr journals library www.journalslibrary.nihr.ac.uk . ethnicity please circle the one that applies to you white british white other european mixed / multiple ethnic group asian /asian british black / black british other ethnic group – please specify .. .. this study is funded by the national institute for health research (nihr) doi: . /phr public health research vol. no. © queen’s printer and controller of hmso . this work was produced by elsey et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. part of the nihr journals library www.journalslibrary.nihr.ac.uk published by the nihr journals library this report presents independent research funded by the national institute for health research (nihr). the views expressed are those of the author(s) and not necessarily those of the nhs, the nihr or the department of health eme hs&dr hta pgfar phr 	public health research ; vol. ; no. 	list of tables 	list of figures 	list of abbreviations 	plain english summary 	scientific summary 	chapter background to study 	defining care farming 	green care 	how care farming works 	the need for a study 	rationale for the study 	aims and objectives 	public involvement 	about this report 	chapter the impact of care farms on quality of life among disadvantaged populations: a systematic review 	introduction, aims and objectives 	methods 	selection criteria 	outcomes 	identification of studies 	study selection, data extraction and management 	quality assessments 	measures of treatment effect 	assessment of reporting biases 	data synthesis 	findings 	characteristics of included studies 	quality assessments 	the logic models 	testing the logic models 	summary 	chapter the pilot study: background and methods 	objectives 	care farming and probation service users 	community orders and the role of care farming 	changes to probation services and impact on the research 	target population, sample sizes and timelines 	outcome measures 	recruitment and follow-up plan 	approvals 	bespoke study documentation 	development of the study procedures within the participating centres 	centre 	local service configuration and identification of target groups 	settings 	recruitment set-up 	centre-specific changes and their impact on the study 	barriers to, and enablers of, project administration 	centre 	local service configuration and identification of target group 	settings 	comparator 	recruitment set-up 	centre-specific changes and their impact on the study 	centre 	local service configuration and identification of target groups 	settings 	meeting our recruitment targets 	centre-specific changes and their impact on the study 	barriers to and enablers of project administration 	data acquisition across all centres 	probation service user demographics and community order data 	reconviction data 	statistical methods 	chapter results of the pilot study 	description of sample: characteristics of respondents 	loss to follow-up with reasons 	follow-up and outcomes 	clinical outcome in routine evaluation–outcome measure results 	warwick–edinburgh mental health and well-being scale 	connectedness to nature scale 	health and lifestyle 	health and social service use 	reconvictions 	seasonality 	discussion of statistical methods 	summary 	chapter economic evaluation 	economic evaluation of care farms: a review of the evidence 	introduction and aims 	methods 	results 	summary of the evidence 	the impact of care farms on health-related quality of life: a systematic review 	introduction and aims 	methods 	results 	summary of the evidence 	cost of crime: a systematic review 	aims and objective 	methods 	results 	summary of the evidence 	analysis of key parameters for a future cost-effectiveness analysis 	introduction 	methods 	results 	summary 	chapter the qualitative study 	introduction 	methods 	identification and recruitment 	topic guide 	interviewing and analysis 	ethics 	findings 	characteristics of sample 	general findings 	themes 	development of a logic model on care farming for probation service users 	summary 	chapter discussion and conclusions 	systematic review evaluating the impacts of care farms 	maximising recruitment, data collection and follow-up 	collecting cost data and feasibility of measuring cost–utility 	feasibility of measuring differences in effectiveness between care farms and comparators 	understanding community order allocation 	logic model of mechanisms for change among probation service users 	strengths and limitations of the research 	recommendations for future research 	recommendations for practice 	acknowledgements 	references 	appendix search strategy for the quality-of-life systematic review 	appendix preferred reporting items for systematic reviews and meta-analyses checklist for the care farm mixed-method systematic review 	appendix data sharing agreements 	appendix full tables from statistical analysis of pilot (see chapter ) 	appendix search strategy for cost-effectiveness systematic review 	appendix topic guides and coding frame from the qualitative study 	appendix example electronic search: medline (via ovid) 	appendix questionnaires: clinical outcome in routine evaluation–outcome measure, warwick–edinburgh mental health and well-being scale, service use and connectedness to nature scale identifying and improving green spaces on a college campus: a photovoice study by: christopher m. seitz, ryan f. reese, robert w. strack, sarah frantz, benjamin west seitz, c.m., reese, r.f., strack, r.w., frantz, s., west, b., ( ). identifying and improving green spaces on a college campus: a photovoice study. ecopsychology, ( ), - . doi: . /eco. . . made available courtesy of mary ann liebert, inc.: http://dx.doi.org/ . /eco. . ***© mary ann liebert, inc. reprinted with permission. no further reproduction is authorized without written permission from mary ann liebert, inc. this version of the document is not the version of record. figures and/or pictures may be missing from this format of the document. *** this is a copy of an article published in the ecopsychology © copyright mary ann liebert, inc.; ecopsychology is available online at: http://online.liebertpub.com. abstract: research suggests that a large percent of college students experience stress due to the demands of college life. campus health professionals use a wide range of interventions to reduce student stress; however, the ability of green spaces on campuses to alleviate stress is often lacking in college health programs and related research. in this study, photovoice methodology was used to conduct a community-based participatory research project in order to identify and improve campus green spaces that students frequent for stress relief. participants included undergraduate students enrolled in an emotional health course. students were instructed to take photos that addressed two open-ended questions: ( ) what green spaces on campus do you visit to alleviate stress? ( ) how could the green spaces on campus be improved for alleviating stress? afterward, students analyzed and placed their photos into distinct themes. results showed that students enjoyed green spaces that featured both man-made structures (e.g., swings, fountains, benches) and exclusively natural areas (e.g., magnolia trees, campus parks). students indicated that campus areas in need of improvement for alleviating stress included trash cans, areas lacking landscaping, piles of cigarette butts, and a dilapidated campus tower. spaces that helped alleviate stress and spaces that needed improvement were both reflective of attention restoration theory. at the culmination of the project, the students shared their findings with the campus community at a photo exhibit. during the exhibit, students' voices were heard by campus administrators in positions of authority (e.g., chancellor, director of facilities operations, grounds crew supervisor). keywords: green space | college | attention restoration theory | student | stress article: http://libres.uncg.edu/ir/uncg/clist.aspx?id= http://dx.doi.org/ . /eco. . http://online.liebertpub.com/ introduction a large portion of college students has experienced stress due to unique factors related to college life. according to the national college health assessment, nearly % of students felt overwhelmed in the past month by all the work they had to complete. in the same assessment, % of students reported feeling overwhelming anxiety in the past month (american college health association, ). research suggests that students feel stress due to the pressure of studying, taking exams, transitioning into college life, living on a low budget (robotham, ), and experiencing relational problems with peers, romantic partners, and college faculty members (hurst et al., ). campus health professionals have used several interventions to alleviate stress felt by college students. interventions tend to be offered during times of heightened stress in the academic year, such as freshman orientation and the week of final exams. programs for students have included arts and crafts, games, comfort food, extended hours at the student gym and library, and free yoga classes and chair massages (margaris, ; mccluskey, ; montclair state university, ). one of the more popular college programs has been pet therapy (young, ), in which dogs are brought on campus for students to interact with in order to lower stress levels (adamle et al., ). although a variety of methods have been used to address student stress levels, there has been minimal focus on the ability of green spaces to help students relax. green spaces (e.g., trees, landscapes, gardens, forests) positively impact many aspects of human wellness. regardless of whether people simply view green spaces (e.g., seeing images of a forest) or spend time physically in green spaces (e.g., going on a walk in a forest), engaging with nature seems to impact human health and, in particular, reduce indices of stress (reese & myers, ; ulrich et al., ). for example, tennessen and cimprich ( ) studied the attention of undergraduate students utilizing a variety of attentional instruments. researchers found that undergraduate students who had a view of green spaces (i.e., trees) from their living quarters performed significantly better on the attentional tasks than persons without views of green spaces. park, tsunetsugu, kasetani, kagawa, and miyazaki ( ) studied japanese male college students in assessing physiological and psychological measures of stress. the researchers used forest and city environments where participants viewed and walked throughout the areas. participants rated their moods, and a variety of physiological measures were measured over a - day period. the researchers found significantly lower measures of salivary cortisol, pulse rate, and blood pressure, and increased parasympathetic nerve activity when participants were in forest settings relative to being in the city. students also reported less depressive symptoms when exposed to forest environments. thus, green spaces seem to impact human wellness, regardless of whether one is in the immediate presence of a green landscape or viewing one from a distance. nonetheless, relatively few studies have been dedicated to studying the use of green spaces on college campuses for alleviating stress. abu-ghazzeh ( ) utilized a phenomenological design in studying the themes of preferred outdoor spaces at a university located in jordan. the researcher interviewed student, faculty, and administrative staff participants in determining the types of places participants preferred, the affective quality of places, and participant behaviors that took place in the university outdoor spaces. abu-ghazzeh found that stakeholders visited most frequently the spaces between university buildings. the features of the most highly visited places included trees, lawns, and quiet landscaped areas. other investigators have utilized survey designs. mcfarland, waliczek, and zajicek ( ) surveyed undergraduate students at a university located in texas, in which they explored the uses of nature and quality of university life. students were asked to rate the extent to which they partook in various activities outdoors on campus. most students were considered high-users of campus green spaces, and of those students, most considered their overall quality of university life to be positive. the researchers found a significant and positive association between use of campus green spaces and quality of life. the more time students spent in nature, the higher they rated their quality of life on campus. mcfarland, waliczek, and zajicek ( ) replicated this study with graduate students. a smaller proportion of graduate students reported spending time outdoors on campus, though the research sample reported similar rates of campus quality, as did the undergraduate sample. finally, speake, edmondson, and nawaz ( ) explored the perceptions and uses of nature on a college campus in the united kingdom using a survey design via systematic sampling. they surveyed undergraduate and postgraduate students. eighty-two percent of the sample was aware of green spaces on campus, and most students indicated that they were aware of the term “green spaces.” eighty-four percent of the sample reported using the campus space for relaxation. more specifically related to the study at hand, participants were asked to rate the campus cleanliness, maintenance, and general appearance of the campus green spaces on a - point likert scale, from very good to very poor. eighty percent rated the cleanliness as very good; the general appearance of the green spaces were very good according to % of the sample; and % reported very good maintenance of the campus green spaces. eighty-one percent of participants reported that they had a favorite green space on campus. the most frequented type of green space reported by the sample included human-touched areas, including formal and planned areas (i.e., a manicured field). the study's authors believed that the students underreported the naturalistic areas on campus (i.e., woodlands) on account of a lack of awareness of the ecological importance of natural areas. scientific inquiries into the uses of green spaces on college campuses have been relatively sparse, but the findings reviewed suggest that exposure to green settings on college campuses reduces stress and increases perceptions of campus quality. the ability for some green spaces to alleviate college study stress may be viewed from attention restoration theory (art; faber taylor & kuo, , ; kaplan & kaplan, ), in which four components have been proposed as promoting the restoration of attention (kaplan, ). first, green environments provide the individual with a sense of being away, even if that person is resting in an arboretum outside the recreation hall on campus. second, the individual experiences an attentional shift from voluntary attention (attention that requires cognitive effort, often called “hard” fascination) to involuntary or “soft” fascination (e.g., observing a sunset or the passing clouds). third, the green space possesses extent; that is, the area may seem larger than the space actually is (e.g., lying on one's back and observing the blue sky on a small patch of grass). fourth, compatibility occurs when the individual fulfills her or his given purpose for spending time in a given green space (e.g., relaxation in an outdoor eating area on campus). if a campus green space possesses these four attributes, it seems that students may be more likely to experience attention restoration and the reduction of stress. for further reading on art, see kaplan ( ). generally speaking, the purposes of the studies cited above were to gather data with regard to which parts of campus were identified as restorative and how college students use green spaces on college campuses and also to discover students' satisfaction with these green spaces. to date, little if any research has been conducted with the specific aim of exploring how the green spaces of a campus might be improved to increase its restorative effects for students. the authors of this article conducted a photovoice study with the purpose of identifying and improving upon the campus green spaces students frequent for stress relief. photovoice is a qualitative methodology used to conduct community-based participatory research. typically, photovoice projects are conducted with people who have minimal influence, or “voice,” within their own community (wang & burris, ). in this methodology, participants are given cameras to take photos of the strengths and weaknesses of their community. afterward, the photos are displayed at a public exhibit and used by participants as talking points to inform members of the community and policy makers about topics that surfaced from the project. generally, photovoice research projects are conducted for three purposes: ( ) to empower participants to document the needs of their community, ( ) to stimulate critical discussion among participants and those who attend the photo exhibit, and ( ) to provide an avenue for participants to have their voices heard by policy makers (wang & burris, ). there were three general research questions that guided the photovoice project reported in this article: ( ) what green spaces on a college campus attract students for the specific purpose of alleviating stress? ( ) what are student perceptions of how green spaces might be improved for alleviating stress? ( ) how might a photovoice project advocating for improvements to green spaces translate into changes made to green spaces on a college campus? methods participants the project was approved by the university's internal review board before participants were recruited. participants included undergraduate students enrolled in a public health education course titled emotional health during the fall of . the project was designed to be a hands- on lesson in stress management, which was an integral part of the course's student learning objectives. in order to avoid coercion, students were given the option to either participate in the project or complete an alternative assignment. although a total of students were registered for the course, one student did not participate in the study and opted to complete the alternative assignment related to stress management. it should also be noted that although participants may be considered a small sample, most photovoice projects in the published literature have recruited less than participants (catalani & minkler, ; hergenrather et al., ). setting the project was conducted at a public university in the southeast of the united states. although the university was in an urban location, landscaping efforts helped make the campus seem somewhat secluded from the surrounding city. the university was awarded with a green star award from the professional grounds management society during the time of the photovoice project. the green star award is a national award that recognizes dedication and excellence in grounds keeping. over , students were enrolled at the university during the time of the project. training because they acted as co-investigators in the research process, students were required to complete the online citi program regarding the protection of human participants prior to the project's starting date. students were also required to attend a -hour in-class training session to learn basic photography techniques, the history and theory behind photovoice, and the ethics of taking photos of other people (e.g., others' consent, privacy laws, photo release process forms) (wang & redwood-jones, ). at the end of the training, students were assigned to take photos that addressed two open-ended questions: what green spaces on campus do you visit to alleviate stress? how could the green spaces on campus be improved for alleviating stress? students were given a -day period to take their photos. students were not limited in the number of photos they could take. group discussion after capturing their photos, students worked in small groups during an additional -hour class session. their group discussions were guided by the showed mnemonic, which has become a popular method of facilitating group discussions in photovoice projects (catalani & minkler, ; hergenrather et al., ). the showed mnemonic stands for what do you see here? what is really happening? how does this relate to our lives? why does this problem or strength exist? what can we do about it? (wang, ) the purpose of using the showed mnemonic was to guide participants in dialogue about the deeper meaning behind their photographs. essentially, the mnemonic helped participants critically think about the “who, what, where, when, and why” of their photos. caption writing students were directed to write a caption about each of their photographs based upon their small group discussions using the showed mnemonic. the captions were written to specify the meaning of each photo. in small groups, the students critically examined each other's writing to determine if the captions reflected what was talked about in their group discussions. the writing process had a major role in the project, since the captions were attached to the photos and read by those who attended the photo exhibit. analysis after completing small group discussion and caption writing, students were directed to view the photos and captions of the entire class. in large group discussion, students analyzed photos by creating separate, distinct themes based from photo content. once themes were identified, students voted which of their classmates' photos would best represent each theme in terms of capturing the voice of the class. photo exhibit the class discussed which members of the campus community should be invited to the photo exhibit. students determined that stakeholders of the project included key administrators (e.g., chancellor, vice chancellors, provost, student affairs, faculty senate, staff senate), facilities operations, the campus grounds crew, the university's office of sustainability, and the general student body. invitations to the photo exhibit were given via e-mail and through word of mouth. results project themes students identified seven overarching themes based from photos and captions. the themes included swings, famous trees, the campus park, fountains, the salad bowl, bench nooks, and room for improvement (table ). table . distribution of photos per theme theme number of photos swings famous trees fountains salad bowl campus park bench nooks room for improvement photos and captions in the swings theme described a popular spot on campus nestled between the library and the student union building that contained a small swing set (fig. ). a variety of trees and shrubs surrounded the swing set area, giving students an opportunity to alleviate stress by swinging in green space. for many students, the swing set had become a campus staple. one student wrote in a caption about the swing set, “this is my go-to area to unwind and not think about responsibility for about an hour.” fig. . student caption: “this is a great place to take a mental break from your classes. this area is located away from some of the busier areas of campus so you can enjoy your surroundings. the swings are a nice way to enjoy the fresh breeze in your face or just enjoy a slower pace.” in the famous trees theme, students took photos of trees that had become well known on campus as ideal places for climbing, relaxation, and making memories. most of the photos were of very tall magnolia trees on campus. the magnolias had several bulky branches and large leaves that gave students privacy and opportunities to climb and set up hammocks (fig. ). javascript:popref('f ') javascript:popref('f ') during class discussion of photos, one student stated that a particular magnolia tree had special meaning for him. he said it was his favorite place on campus to relax and was the place where he asked his friend if she wanted to date him. it was under that tree where they shared their first hug. other students stated that his story was common. these famous magnolia trees had become landmarks of where friendships and relationships were developed, made obvious by the large number of initials and dates carved in the trees' trunks and branches. fig. . student caption: “this photo was taken outside the petty building on college avenue. this tree is where i performed a dance for my dance appreciation class last semester. not only is this tree awesome to climb, it created college memories! this is the most awesome tree on campus; it provides shade, relaxation, and lots of fun!” the campus park theme consisted of photos that described a more secluded area of campus that featured large trees, rocks, and a small stream. students wrote about alleviating stress by either walking through the park's trail or sitting on the rocks located next to the stream. a few students used the park to meditate and pray in solitude, while others noted that the park was a popular place for students to meet and talk. although most students described the park as a private spot that was beneficial for relieving stress (fig. ), a few students took photos of litter and exposed drainage pipes. the students made recommendations in their captions that the park be better maintained and that the pipes be covered up with earth-toned paint or ivy plants. fig. . student caption: “this spot is located in peabody park beneath the bridge leading to the music building. this is a particularly interesting rock as it provides a seat for people to sit and observe nature. this is a great place to unwind after a stressful day and listen to the sounds of birds chirping, water flowing, and leaves moving in the wind.” in the fountains theme, students identified two locations on campus that featured a fountain. the fountains were very different from each other (e.g., location, level of seclusion, design); however, student captions were similar regarding the peacefulness of falling water. students noted their appreciation of listening to the water and how the sound helped to alleviate their stress (fig. ). fig. . student caption: “this fountain is located outside the music building and provides students with a relaxing, peaceful atmosphere. there is limited traffic around the area, as it is secluded from the main buildings on campus. it is quiet and surrounded by trees, flowers, and shrubbery where students can enjoy the nature and the calming sound of the fountain. there are rocks and benches surrounding the fountain where i like to come and sit when i have free time on campus.” the salad bowl theme included photos of an on-campus park. the center of the park was lower in elevation than its perimeter, giving it a bowl-like appearance. the park contained a wide variety of trees and plants, giving the plant life an appearance of “salad” inside a bowl. “salad bowl” has been an endearing term used by students for decades when referring to the park. photos and captions regarding the salad bowl described the area as a place for students to study, relax, or walk through on the way to class (fig. ). students enjoyed the presence of the trees for shade, the changing leaves, and the opportunity to spend time in nature. a few students wrote that they enjoyed passing through the park when going to or from class because the area gave them a brief moment to calm down. one student wrote that the salad bowl had “been a faithful friend for the past five years.” fig. . student caption: “i love walking through the salad bowl on my way to and from class. it gives me an outlet from the hustle of everyone walking the sidewalk along spring garden street. this area allows me to relax and think about things like nature that don't stress me out. it takes me away from the chaos of life and gives me a moment to breathe.” the theme that students titled bench nooks described small, private areas containing benches that were surrounded by trees, wildlife, and flowers. a consistent finding within the theme was an appreciation of how the nooks felt private, or “secret.” students mentioned in small group discussions that few people were aware of certain nook locations, which made these areas very special. students felt a connection with nature at these spots and felt relief from stress by observing birds, butterflies, and squirrels (fig. ). photos and captions also specified that a variety of flowers in these hidden nooks were relaxing and aesthetically pleasing to the students, in terms of both sight and smell. javascript:popref('f ') javascript:popref('f ') fig. . student caption: “these benches are behind moore strong residence hall near the golf course. they are such a great hide-away from the busyness of the rest of the campus. i love to relax and journal here because it is quiet, secluded, and surrounded by nature. there are trees everywhere with squirrels and chipmunks always rustling around.” finally, the room for improvement theme included photos about campus areas that could be enhanced in terms of alleviating stress. students took photos of poorly placed trash cans, a dilapidated campus structure, and spots that needed landscaping or removal of cigarette butt litter. most photos in the room for improvement theme were of trash cans, and recycling cans in some instances, that were placed directly beside several campus benches (fig. ). students noted that the benches had potential for alleviating stress, since the benches were located either in or near nature; however, students complained that the trash cans smelled bad and also attracted swarms of bees. a number of photos also depicted a neglected campus structure known as the “cooling tower.” the tower had formerly been used by art students to cool their pottery that was taken out of kilns (fig. ). the tower had not been used in years and had become an area filled with graffiti and litter. students also took photos of areas on campus that were bare, containing no trees, dead grass, dirt, and cigarette butts. these areas and the cooling tower had made students feel that the spots were unkept by the university and also disrespected by students who smoked cigarettes. javascript:popref('f ') javascript:popref('f ') fig. . student caption: “these park benches are all throughout campus. the only drawback is that when i sit on these benches i don't want to be able to smell the trash cans next to them. also, during the spring and summer, the bees and yellow jackets love to fly around the smelly trash cans. i would love to sit in these benches between classes but don't want to come away stung or smelling. one way to improve this is to move the trash cans away from the benches so that the smell and the bugs aren't swarming around.” fig. . student caption: “i can't help but think that the tower thing [cooling tower] could be taken down. also, to make this place seem less sketchy, maybe there can be paintings or flowers.” photo exhibit a total of community members attended the photo exhibit, including the university's chancellor, the director of facilities operations, the grounds crew supervisor, two members of the grounds crew, two faculty, six staff, and ten students who were not enrolled in the emotional health course. the exhibit was held for hours in a classroom at the university. during the photo exhibit, the students remained near their photos and conversed with attendees. students shared their favorite places to relax on campus and also advocated that certain areas be improved. informing policymakers student advocacy during the photo exhibit produced several key outcomes. first, after viewing photos and speaking with students, the university's grounds crew supervisor asked that the exhibit be shown to the entire grounds crew. an electronic version of the exhibit (i.e., photos and related captions) was sent to the grounds crew supervisor via e-mail and viewed by roughly grounds crew members. second, the director of facilities operations spoke with the principal investigator during the photo exhibit and stated that he would brainstorm ideas with the grounds crew about where to move trash cans away from benches. third, the university's chancellor mentioned that she had engaged in prior discussions with other administrators about the cooling tower. the chancellor indicated that plans were being made to either remove or improve the tower area. she said that the photos further demonstrated a need to take action and make the campus area better for student well-being. in terms of having their voices heard, the first author observed, anecdotally, during the photo exhibit that students felt that their views had been listened to by campus leaders. for instance, one student approached the first author during the photo exhibit and whispered excitedly, “i can't believe the chancellor just talked to me about my photo!” another student whispered to the first author, “look, he's taking notes,” referring to the director of facilities operations, who had been taking notes while speaking with students about campus trash cans. discussion the findings of the first research question can be grounded in the four major tenets of art (kaplan, ). each of the seven themes that emerged from this study was grounded in a student's sense of “being away” from her or his typical environment and experiencing a whole different world (i.e., extent). for example, the bench nooks were experienced as remote and secret getaways to students, even though they were just several hundred feet away from major parts of campus. in addition, that so many of the photos included man-made structures (i.e., fountains, the campus swing set, and nooks that contained benches to sit on) was initially surprising to the study authors. however, these structures provided students with a familiar platform in order to connect with nature and alleviate stress in terms of art's concept of compatibility. for example, the swing set and benches, which were not natural in themselves, gave students an opportunity to observe and engage with surrounding trees, bushes, flowers, animals, and insects. these findings are similar to those of speake et al. ( ), who also found that students possessed preferences for green spaces with a human touch. one explanation for this preference may be grounded in art's concept of compatibility. students may have viewed human-touched nature as the better mode of meeting the purpose of relaxation on account of a lack of familiarity and comfort with a strictly natural space. future research should explore the differences between preferences for human-created green spaces and those more natural in experience. furthermore, campus parks and the large trees provided students with a drastic attentional shift, in which students could effortlessly engage in the beauty of the natural areas and bask in the seclusion from others. for example, the raised perimeter of the salad bowl and the trees and shrubs located in and around the park's border gave students the feeling that they were totally separated from the rest of the campus. likewise, the large leaves and branches of the magnolia trees hid students from others' view, allowing students to escape the chaos of campus life and direct their attention to the natural environment. the sense of seclusion and being enveloped by green spaces allowed students to relax by taking attention away from campus buildings and the feelings often associated with those structures (e.g., lectures, homework, exams, e-mails). these green spaces provided students with a sense of being away and an opportunity to engage in soft fascination with nature that was seemingly effortless in between classes. this type of soft fascination allowed students to take a mental break from the hard fascination related to their campus lives and busy course schedules. it is worth noting that although the project's focus was on green spaces, some students captured photos and wrote about human interaction as an integral part of those spaces and of the relaxation process. a few photos and captions within the swings, famous trees, and campus park themes emphasized how the presence of friends made these spaces ideal areas for alleviating stress. the green space most frequently associated with the presence of groups of people was the famous trees theme. the size and number of the large magnolia trees for climbing or sitting on seemed perfect for the interaction of several people. also, some of the green spaces that contained human-made structures were intentionally designed for groups of people to enjoy. for instance, since the campus swing set contained two swings, it is obvious that the area was built for two people to swing on. likewise, benches located in private nooks were large enough to fit at least three people per bench. it is not surprising that some students made use of green spaces with other people in order to alleviate stress. nature has been found to increase social contact with neighbors (sullivan et al., ), contribute to intimate relationships between neighbors (kuo et al., ), and influence people to be more caring (weinstein et al., ). additional research in the area of social connectedness and nature on college campuses might facilitate the innovative integration of natural spaces into college classrooms and community events. in regard to the photovoice project's second research question, student photos and captions suggested that man-made spaces associated with hard fascination were ineffective in lowering student stress levels. in particular, students noted that the graffiti-covered cooling tower, smelly trash cans that attracted bees, and green spaces covered with cigarette butts were not helpful in alleviating stress. these findings can also be explained from a perspective in art. specifically, the authors propose that certain areas were not suitable for alleviating stress because of a tendency toward hard fascination in those areas (e.g., focusing on cigarette butts, swatting away bees) that surpassed any level of soft fascination that may have taken place in those settings had the man-made structures been removed. the trash, pipes, and other distractions in these areas also took away from one's ability to experience a sense of being away, fulfilling one's end goal relaxation (i.e., compatibility), and one's ability to experience a different kind of natural world entirely (i.e., extent). in response to the project's third research question, findings indicated that student advocacy efforts may have inspired future changes in the quality of a campus's green spaces. although the photo exhibit did not result in any immediate changes, the exhibit generated an interest and spark for campus administrators to begin discussions about relocating the trash cans away from campus benches. in addition, the exhibit encouraged administrators to continue with previous discussions and plans regarding the removal of the campus cooling tower. finally, it is important to note that although the project did not result in changes to green spaces on campus, the project did achieve one of the major purposes of conducting photovoice research: providing participants with an opportunity to have their voices heard by policymakers (wang & burris, ). limitations the photovoice project possessed several limitations. first, because the project took place at only one university and did not include random sampling, its findings may not be applicable or generalizable to other universities. specifically, students exposed to different campus structures at other universities may have photographed green spaces unlike those reported in this study. second, it is possible that students may have responded differently had they not been enrolled in the course. moreover, campus administrators at other universities may not have reacted to a photo exhibit as did those who attended our project. third, while we feel that most students responded in genuine ways to the assignment, the limitations of extrinsic motivation (i.e., getting a good grade) for engaging in the course cannot be overlooked. for instance, some students may have captured photos of green spaces that they did not actually spend time at in order to relieve stress. however, it should be noted that authors attempted to avoid not only coercion but also extrinsic motivation by offering an alternative assignment to the photovoice project. fourth, stress and stress relief were not measured in this project. the amount of stress that students felt and the degree to which green spaces relieved that stress are unknown. therefore, readers should consider the findings of this project in light of student self-report of perceived stress levels and stress relief. finally, the project was unable to create measurable change on campus (i.e., the movement of trash cans). the authors believe that neglecting to develop follow-up advocacy efforts after the photo exhibit may have contributed to the lack of change resulting from the project. researchers who wish to utilize this methodology on their college campuses should have a clear strategy and intent for using the methodology to make the most of the community-based design in catalyzing systemic change. the authors suggest that those planning to use photovoice should develop a long-term plan for conducting continued advocacy beyond the project's photo exhibit. conclusion the findings from the photovoice project have several implications for campus stakeholders. first, those responsible for planning the structure of college campuses may want to consider enhancing the quality and quantity of green spaces in terms of the ability of spaces to alleviate stress. the findings from the photovoice project provide a long list of green spaces and natural features preferred for alleviating stress that may be considered when planning campus landscapes. second, campus health professionals should consider including the use of green spaces for health programs related to student stress relief. similar to offering pet therapy or yoga classes during finals week, health professionals could offer a wide variety of creative programs that not only provide directions to ideal campus green spaces but also incentivize the opportunity to spend time in green spaces throughout the entire academic calendar. author disclosure statement no competing financial interests exist. references t. m. abu-ghazzeh ( ). communicating behavioural research to campus design. environment and behavior, , – . k. n. adamle, t. a. riley, & t. carlson ( ). evaluating college student interest in pet therapy. journal of american college health, , – . american college health association ( ). american college health association—national college health assessment ii: reference group executive summary spring . hanover, md: american college health association. c. catalani, & m. minkler ( ). photovoice: a review of the literature in health and public health. health education & behavior, , – . a. faber taylor, & f. e. kuo ( ). children with attention deficits concentrate better after walk in the park.journal of attention disorders, , – . a. faber taylor, & f. e. kuo ( ). could exposure to everyday green spaces help treat adhd? evidence from children's play settings. applied psychology: health and well-being, , – . k. c. hergenrather, s. d. rhodes, c. a. cowan, & g. bardhoshi ( ). photovoice as community-based participatory research: a qualitative review. american journal of health behavior, , – . c. s. hurst, l. e. baranik, & f. daniel ( ). college student stressors: a review of the qualitative research.stress and health, , – . s. kaplan ( ). the restorative benefit of nature: toward an integrative framework. journal of environmental psychology, , – . r. kaplan, & s. kaplan ( ). the experience of nature: a psychological perspective. cambridge, uk: cambridge university press. f. e. kuo, w. c. sullivan, r. l. coley, & l. brunson ( ). fertile ground for community: inner-city neighborhood common spaces. american journal of community psychology, , – . c. margaris ( , april ). spring de-stress fest kicks off. the bottom line. retrieved fromhttp://thebottomline.as.ucsb.edu/ / /spring-de-stress-fest-kicks-off r. mccluskey ( , may ). campus promotions aim to help ua students de-stress during finals week. daily wildcat. retrieved from http://www.wildcat.arizona.edu/article/ / /campus-promotions-aim-to-help-ua- students-de-stress-during-finals-week a. l. mcfarland, t. m. waliczek, & j. m. zajicek ( ). the relationship between student use of campus green spaces and perceptions of quality of life. horttechnology, , – . a.l. mcfarland, t.m. waliczek, & j.m. zajicek ( ). graduate student use of campus green spaces and the impact on their perceptions of quality of life. horttechnology, , , – . montclair state university. ( , may ). de-stress week: soothe your stress before finals. university news. retrieved from http://www.montclair.edu/news/article.php?articleid= b. j. park, y. tsunetsugu, t. kasetani, t. kagawa, & y. miyazaki ( ). the physiological effects of shinrin-yoku (taking in the forest atmosphere or forest bathing): evidence from field experiments in forests across japan. environmental health & preventive medicine, , – . r. f. reese, & j. e. myers ( ). ecowellness: the missing factor in holistic wellness models. journal of counseling & development, , – . d. robotham ( ). stress among higher education students: towards a research agenda. higher education, , – . j. speake, s. edmondson, & h. nawaz ( ). everyday encounters with nature: students' perceptions and use of university campus green spaces. journal of studies and research in human geography, , – . w. c. sullivan, f. e. kuo, & s. f. depooter ( ). the fruit of urban nature vital neighborhood spaces.environment and behavior, , – . c. m. tennessen, & b. cimprich ( ). views to nature: effects on attention. journal of environmental psychology, , – . r. s. ulrich, r. f. simons, b. d. losito, e. fiorito, m. a. miles, & m. zelson ( ). stress recovery during exposure to natural and urban environments. journal of environmental psychology, , – . c. wang, & m. burris ( ). empowerment through photonovella: portraits of participation. health education quarterly, , – . c. wang, & m. burris ( ). photovoice: concept, methodology, and use for participatory needs assessment.health education & behavior, , – . c. c. wang ( ). youth participation in photovoice as a strategy for community change. journal of community practice, , – . c. c. wang, & y. a. redwood-jones ( ). photovoice ethics: perspectives from flint photovoice. health education & behavior, , – . n. weinstein, a. k. przybylski, & r. m. ryan ( ). can nature make us more caring? effects of immersion in nature on intrinsic aspirations and generosity. personality and social psychology bulletin, , – . j. s. young ( ). pet therapy: dogs de-stress students. journal of christian nursing, , – . received april , accepted for publication may , our greatest glory is not in never falling, but in rising every time we fall. confucius common sense poses resilience as the ability to bend but not break, bounce back, and even grow in the face of adverse life experiences. it generally refers to a pattern of functioning indicative of positive adaptation in the context of significant risk or adversity. thus resilience is not invulnerability to stress or risk but rather a favorable adjustment. it has been argued recently that the word resilience is almost useless as a single word and that it really only makes sense if we qualify it in the context of individuals, families, organizations, societies, and cultures ( ). individual resilience is part of day-to-day clinical care, however viktor frankl and more recently stephen hawking are names not to be forgotten. the austrian psychiatrist survived as a prisoner of war in auschwitz to make an outstanding contribution for the care of mental health patients creating logotherapy and also arguing for the pivotal role of the meaning of life in resilience and that it was best to focus on what is left rather than what is lost. hawking was diagnosed with motor neuron disease at the age of with no more than three years of life to enjoy. he kept working and uncovering the mysteries of the universe for more than years. both survived stressful situations, however also maintained development in face of adversity. some particular protective and resilience-enhancing factors were involved in both cases making then more resilient than others. however, there are individual differences. resilience research suggests a potential association with certain psychological and physical characteristics and optimal outcomes, such as higher quality of life, greater happiness, better mental health and wellbeing, successful aging, lower depression, longevity, and reduced mortality risk. of these, higher quality of life, greater happiness, and lower depression are common outcomes associated with interventions ( ). whether resilience is a trait that determines a response to adversity or results from environmental engagement are not mutually exclusive propositions. if it is a trait gene are probably involved ( ). if resilience is rather a process it can be supposed an interaction with environment resources (e.g., access to supportive relationships, close and nurturing family bonds, quality relationships within the community) not ruling out biological or even genetic contributors. some people could be more resilient than others due to better support systems, better opportunities, better dna, and a host of other non-dna factors either appearing alone or interacting with one another ( , ). ong et cols ( ) reported that socially connected individuals displayed less systolic and diastolic blood pressure reactivity on days characterized by high negative emotional arousal. those high in social connectedness showed greater ability to inhibit the detrimental impact of negative emotion on subsequent cardiovascular responses. these findings remained significant when controlling for other methodological factors known to predict cardiovascular changes (e.g., time of day, trait affect, age, gender, marital status). personality assets s (e.g., ego resilience, positive self- concepts, hardiness) may also boost resilience. optimistic people make a subjective estimate of the probability of achieving goals or desired results based on other factors, such as self-efficacy (belief in their own capacity of starting actions, achieving goals and dealing with life) and internal locus of control or contingency (how individuals expect life events or results to be motivated by their actions). self-efficacy and internal locus of control are psychological factors that support the construct of resilience and are associated with less suffering from the negative effects of stress and burden. therefore, people with grounded optimism, high level of self-efficacy and internal locus of control may be more resilient to stressful situations, / may reduce vulnerability to burden ( ). it has been shown that those capable of resilience to adversity are people who appear to possess a capacity for behavioral elasticity or flexible adaptation to impinging challenges. the hallmark of this characteristic is the capacity to shape and adapt behavior to the demands of a given stressor event. the process of constructing and reinterpreting past events in light of more recent ones also seems to contribute to developing resilience by helping to clarify the meaning of adverse experiences. this process appears to create a genuine acceptance and distance between the emotional weight of adversity and day-to-day life ( ). however these characteristics are not a lifetime guarantee for resilience since it is defined in terms of the level of adjustment after a stressor event. it cannot be defined in the abstract or applied to individuals in the absence of an extremely aversive experience, such as loss. resilience is defined as an ex post facto ( ). editorial resilience r.m. guimarÃes corresponding author: geriatric medical centre, hospital universitário, universidade de brasília, brasília, brazil, remaig@uol.com.br © serdi and springer-verlag international sas, part of springer nature j nutr health aging. ; ( ): - published online august , , http://dx.doi.org/ . /s - - - the journal of nutrition, health & aging© j nutr health aging volume , number , resilience in old age historically, resilience research has been largely committed to early childhood and adolescence. successful ageing is supported by vast literature. resilience in adulthood and later life, by comparison, remains understudied. it seems that those who failed to achieve success do not deserve elegant conferences and enthusiastic applause. some old people appear to have the capacity for resilience similar to those who are younger suggesting that resilience may also support longevity ( ). declining health may reduce the quality of life of older people particularly when impairment or functional limitation is present. this is not an unmanageable barrier for well-being, since resilience is not related to disease- specific parameters ( ). some may surrender to minor insults, others like stephen hawking, had a superlative life without any voluntary movement. in some cases religiosity plays an important role in resilience. generally, positive methods of religious coping (e.g. seeking spiritual support, benevolent religious reappraisals) can improve health. negative methods of religious coping (e.g. punishing god reappraisal, interpersonal religious discontent) may be predictive of declines in health. patients who continue to struggle with religious issues over time may be particularly at risk for health-related problems ( ). resilience in old age must also contemplate the care givers that can be in the same age group of the patient since the activity can be a source of burden. it has been said that when the doctor is examining a patient with alzheimer disease he is also in front of an additional occult patient, the care giver, who may be anxious, depressed or in pain. medicine and resilience doctors wish their patients to be resilient to a long list of adversities as unpleasant symptoms, drug side effects and negative perspectives. some are sympathetic and helpful, others not so much. treatment of depression can be an alternative to reinforce resilience ( ), as can palliative medicine and terminal care attenuate suffering associated to the perspective of death. nonpharmacological strategies can also improve resilience as is the case of a hospital clown program. it is considered a vicarious therapeutic because clown figures express their empathy and show through their attitudes and behavior that the child as well as all his/her symptoms in this exposed illness situation are understood and respected. this reinforces the child’s self-confidence and belief that he/she can influence the inner affects and can control the course of events in a more humorous way ( ). the same applies to pet therapy for institutionalized elderly. the implementation and success of pet therapy could have a great emotional and social impact, bringing relief to patients and their family members, but also to health professionals ( ). successful medical interventions are mainly focused on cure and survival, however, in an aging world it is time to value care and resilience. references . southwick sm, bonanno ga , masten am, panter-brick c, yehuda r. resilience definitions, theory, and challenges: interdisciplinary perspectives. eur j psychotraumatol ; : - . . macleod s, musich s, hawkins k, alsgaard k, wicker er. the impact of resilience among older adults. geriatr nurs ; : - . . stein mb, campbell-sills l, gelernter j. genetic variation in httlpr is associated with emotional resilience am j genet b neuropsychiatr genet ; b ( ): - . . gaffey ae, bergeman cs, clark la, wirth mm. aging and the hpa axis: stress and resilience in older adults. neurosci biobehav rev ; : - . . ong ad, allaire jc. cardiovascular intraindividual variability in later life: the influence of social connectedness and positive emotions. psychol aging ; ( ): - . . dias r, santos rl, sousa mfb, nogueira mml, torres b, belfort t, dourado mcn.resilience of caregivers of people with dementia: a systematic review of biological and psychosocial determinants. trends psychiatry psychother. ; : – . . mancini ad, bonanno ga. predictors and parameters of resilience to loss: toward an individual differences model j pers ; ( ): - . . zeng y, shen k. resilience significantly contributes to exceptional longevity. curr gerontol geriatr res. ; : . doi: . / / . epub dec . . kubzansky ld, sparrow d, vokonas p, kawachi i.is the glass half empty or half full? a prospective study of optimism and coronary heart disease in the normative aging study. dtsch med wochenschr. ; ( ): - . . pargament ki, koenig hg, tarakeshwar n, hahn j. religious coping methods as predictors of psychological, physical and spiritual outcomes among medically ill elderly patients: a two-year longitudinal study. j health psychol ; ( ): - . . lavretsky h, siddarth p, irwin mr. improving depression and enhancing resilience in family dementia caregivers: a pilot randomized placebo-controlled trial of escitalopram. am j geriatr psychiatry. ; ( ): - . . linge l. joyful and serious intentions in the work of hospital clowns: a meta- analysis based on a -year research project conducted in three parts. int j qual stud health well-being ; issue . . sollami a, gianferrari e, alfieri m, artioli g, taffurelli c. pet therapy: an effective strategy to care for the elderly? an experimental study in a nursing home. acta biomed ; ( -s): - . preliminary studies on isolates of clostridium difficile from dogs and exotic pets | scholarly publications skip to main content leiden university scholarly publications 	home 	submit 	about 	 select collection all collections medicine / leiden university medical centre (lumc) academic speeches dissertations faculty of archaeology faculty of governance and global affairs faculty of humanities faculty of science faculty of social and behavioural sciences leiden journals, conference proceedings and books leiden law school leiden university press research output ul search box persistent url of this record https://hdl.handle.net/ / documents 	 	download 	 	 not applicable (or unknown) 	 open access 	 full text at publishers site in collections this item can be found in the following collections: 	medicine / leiden university medical centre (lumc) 	 andres-lasheras, s.; martin-burriel, i.; mainar-jaime, r.c.; morales, m.; kuijper, e.; blanco, j.l.; ... ; bolea, r. ( ) 	 preliminary studies on isolates of clostridium difficile from dogs and exotic pets 	 article / letter to editor 	 clostridium difficile dog exotic metronidazole-resistant pcr-ribotyping mlst 	all authors 	andres-lasheras, s.; martin-burriel, i.; mainar-jaime, r.c.; morales, m.; kuijper, e.; blanco, j.l.; chirino-trejo, m.; bolea, r. 	date 	 - - 	journal 	 bmc veterinary research 	volume 	 	doi 	 doi: . /s - - - © - leiden university 				a service provided by leiden university libraries 	contact 	about us 	recently added 	digital collections 	student repository matched pilot study examining cannabis-based dronabinol for acute pain following traumatic injury schneider- smith e, et al. trauma surg acute care open ; :e . doi: . /tsaco- - open access matched pilot study examining cannabis- based dronabinol for acute pain following traumatic injury elisabeth schneider- smith, kristin salottolo, claire swartwood, casey melvin, robert m madayag, david bar- or to cite: schneider- smith e, salottolo k, swartwood c, et al. trauma surg acute care open ; :e . pharmacy department, st. anthony hospital and medical campus, lakewood, colorado, usa trauma research department, st. anthony hospital and medical campus, lakewood, colorado, usa trauma services department, st. anthony hospital and medical campus, lakewood, colorado, usa correspondence to dr david bar- or; davidbme @ gmail. com this paper was presented at the american society of health- system pharmacists meeting (anaheim, california, usa) and the american college of clinical pharmacy global conference (seattle, washington, usa). received september revised november accepted december original research © author(s) (or their employer(s)) . re- use permitted under cc by- nc. no commercial re- use. see rights and permissions. published by bmj. abstract background to determine whether adjunctive dronabinol, a licensed form of delta- - tetrahydrocannabinol, reduces opioid consumption when used off- label for managing acute pain following traumatic injury. methods this matched cohort study included patients who were admitted with a traumatic injury between march and october . the hospital pharmacy database was used to identify patients who received dronabinol (cases), and they were matched : to patients who did not receive dronabinol (controls) using age, cause of injury and hospital length of stay. the primary outcome, change in opioid consumption, was calculated using morphine milligram equivalents (mme). the change in mme was calculated for cases as total mme over hours with adjunctive dronabinol minus hours prior to dronabinol, and for controls as total mme – hours from admission minus – hours from admission. data are presented as mean and se or median and iqr. statistical analysis was performed using paired t- tests and mcnemar’s tests. results there were patients included: cases and matched controls. dronabinol was initiated ( – ) hours from admission. cases and controls were well matched. cases had a significant reduction in opioid consumption with adjunctive dronabinol (− ( ) mme, p< . ), while opioid consumption was unchanged for controls (− ( ) mme, p= . ). this resulted in a ninefold greater reduction in opioid consumption for cases versus controls that was statistically different between pairs (p= . ). nineteen ( %) cases reported using marijuana; in this subset, opioid consumption was reduced with adjunctive dronabinol (− ( ) mme, p< . ) versus a non- significant increase in opioid consumption in matched controls ( ( ) mme, p= . ); difference between groups, p= . . conclusions the results of this study suggest adjunctive dronabinol reduces opioid consumption following traumatic injury. the opioid- sparing effect of dronabinol may be greater in patients who are marijuana users. level of evidence iii. introduction delta- -­tetrahydrocannabinol­(Δ - thc) is a canna- binoid with psychotropic properties and is the primary active pharmacological compound in cannabis (marijuana). thc and other cannabinoids responsible for marijuana’s effect, such as cannabi- diol and cannabinol, bind to the g protein- coupled cannabinoid receptors cb and cb . cb receptors are predominantly found at central and peripheral nerve terminals where they mediate transmitter release and have varied roles including inducing properties associated with analgesia. cb receptors are highly expressed throughout the immune system and are likely involved in cytokine release. canna- binoid receptors were not discovered until , thus research and development efforts into the endogenous cannabinoid (endocannabinoid) system were only recently accelerated. cannabinoids affect normal inhibitory pathways that influence nocicep- tion in humans. there is growing interest in the therapeutic potential of cannabinoids, especially in treating chronic pain – and neuropathic pain. there are two active food and drug administration- approved synthetic cannabinoids containing­Δ - thc: dronabinol (capsule and oral solution) and nabilone. dronabinol is available by prescription in the usa, canada, germany, australia and new zealand to treat nausea and vomiting with chemotherapy and for weight loss and appetite loss in patients with hiv. dronabinol and other cannabinoids have been studied in painful conditions, but almost exclusively in chronic pain, cancer pain, hiv- associated sensory neuropathy and pain associated with multiple sclerosis. – results in patients with chronic pain are inconclusive; some studies show marked decreases in pain, whereas others demonstrate no significant reductions in pain compared with placebo, or suggest a questionable risk versus benefit ratio. few studies have exam- ined cannabinoid use with acute pain. the analgesic effects that are produced with cannabinoids are more likely to occur in hyper- algesic and inflammatory states, giving rise to the hope of being effective at reducing acute pain following injury. dronabinol was approved on the hospital system formulary at our level i trauma center without restrictions. recently, there has been an increased use of adjunctive dronabinol for treating pain based on anecdotal evidence of a beneficial treatment effect. however, there are no studies to date that have been conducted to examine the effect of dronabinol in trauma patients. the objective of this matched cohort study is to examine the effects of adjunctive dronabinol for acute pain management following traumatic injury, hypothe- sizing that dronabinol reduces opiate consumption compared with matched controls. patients and methods study design and population this retrospective matched cohort study was conducted at a community- based level i trauma o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://tsa co .b m j.co m / t ra u m a s u rg a cu te c a re o p e n : first p u b lish e d a s . /tsa co - - o n f e b ru a ry . d o w n lo a d e d fro m http://gut.bmj.com http://tsaco.bmj.com/ schneider- smith e, et al. trauma surg acute care open ; :e . doi: . /tsaco- - open access figure primary and secondary outcome definitions for cases and controls. mme, morphine milligram equivalents. center over months ( march through october ). the hospital pharmacy database was used to identify trauma patients who received dronabinol (cases). patients who received dronabinol were matched : to trauma patients who did not receive dronabinol (controls). matching was performed by age (± years), cause of injury (eg, vehicular crash, fall) and length of stay (los, ± days). dronabinol prescribing practice dronabinol has been prescribed off- label for the treatment of pain at our level i trauma center since . trauma surgeons are the main prescribers of dronabinol for our trauma popu- lation. patients do not request adjunctive dronabinol, and it is possible some patients refused this medication. the decision to use dronabinol is provider specific and is used as part of multimodal analgesia; dronabinol is not used for withdrawal symptoms. a typical multimodal analgesia regimen begins with a scheduled non- narcotic, followed by a mild narcotic, before proceeding to an intravenous narcotic. if this regimen is unable to control the patient’s pain, then adjunctive dronabinol may be offered based on provider preference. at the time of the study, antineuropathics (gabapentin) and muscle relaxants were not commonly used for pain at our institution, although they are currently used as part of multimodal analgesia. pet therapy and music therapy are available but are not typically used in the acute phase of pain management. covariates variables that were abstracted from the patients’ electronic medical record included dronabinol dosing and frequency, the indication for dronabinol, opioid analgesics prescribed (type, dose, frequency, route, date and time), non- opioid multimodal pain adjuncts (type, dose, frequency, route, date and time), all self- reported pain scores recorded on the pain numeric rating scale (nrs, – ) and current self- reported drug use (alcohol, marijuana, other drugs of abuse). variables that were abstracted from the hospitals’ trauma registry included patient demo- graphics (age, gender), injury characteristics (cause of injury, injury severity score, injury characteristics) and clinical outcomes (hospital los, intensive care unit los, mortality). outcomes the primary outcome was change in opioid consumption, calculated as the average total morphine milligram equivalents (mme) consumed during the first hours on treatment minus the average total mme consumed over a hours baseline period, as defined in figure . secondary outcomes included: the average total mme consumed during the first hours on treatment; the average pain nrs score on treatment; the average change in pain nrs score, calculated as the average pain score on treatment minus the average pain at baseline. we also examined the change in the average total non- opioid multimodal pain adjuncts (acetaminophen, non- steroidal anti- inflammatory drugs, muscle relaxants and gabapentin) consumed on treatment minus baseline; adjuncts that were used in at least % of patients were tabulated. statistical analysis statistical analysis was performed with sas v. . (sas, cary, north carolina, usa) and significance was set at α< . . data are presented as mean and se or median and iqr range. demo- graphics and injury characteristics were analyzed with paired t- tests and mcnemar’s tests for cases and their matched controls. for the primary outcome, the difference between cases and controls in change in opioid consumption was analyzed with a paired t- test. we examined the primary outcome in our overall matched population, and in the subset of cases who self- reported using marijuana and their matched controls. one- sample t- tests were used to separately analyze the change in opioid consump- tion for cases and controls. secondary outcomes were analyzed with paired t- tests. results over the - month study period, there were patients admitted for a traumatic injury who were administered dronabinol. twelve cases were excluded (figure ). thus, there were patients included in the study: patients received dronabinol (cases) and patients did not receive dronabinol (controls). the anal- ysis population was predominantly young (aged ( – ) o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://tsa co .b m j.co m / t ra u m a s u rg a cu te c a re o p e n : first p u b lish e d a s . /tsa co - - o n f e b ru a ry . d o w n lo a d e d fro m http://tsaco.bmj.com/ schneider- smith e, et al. trauma surg acute care open ; :e . doi: . /tsaco- - open access figure population distribution. table matched cohort demographics and outcomes covariate, % (n) or mean (se) dronabinol cases (n= ) non- dronabinol controls (n= ) p value males . ( ) . ( ) . mean age, years . ( . ) . ( . ) . mean injury severity score . ( . ) . ( . ) . cause of injury vehicular crash . ( ) . ( ) . fall cause . ( ) . ( ) . other cause . ( ) . ( ) . surgical intervention . ( ) . ( ) . injury location/region head injury . ( ) . ( ) . chest injury . ( ) . ( ) . abdominal injury . ( ) . ( ) . spinal injury . ( ) . ( ) . extremity . ( ) . ( ) . pre- injury marijuana user . ( ) . ( ) . pre- injury opioid user . ( ) . ( ) . pain management contract ( ) ( ) na median (se) hours to ‘post’period . ( . ) ( ) . mean baseline* mme . ( . ) . ( . ) . mean baseline* pain . ( . ) . ( . ) . mean hospital los, days . ( . ) . ( . ) . mean icu los, days . ( . ) . ( . ) . p value: mcnemar's test for categorical variables, paired t- test for continuous variables, wilcoxon rank sum test for medians. the values in bold indicate statistical significance. *baseline: hours before dronabinol (cases) and – hours from admission (controls). icu, intensive care unit; los, length of stay; mme, morphine milligram equivalents. years) and male ( %) with injuries sustained from a vehic- ular crash ( %) or a fall ( %). the injury severity score was ( – ), and the los was ( – ) days. patients were well matched for all matching variables (age, cause of injury, los), as well as other injury and demographic characteristics (table ). there were significant differences between groups based on the presence of spinal cord injury and pre- injury marijuana use. among cases, the primary indication for dronabinol was pain (n= , %), followed by anxiety (n= ) and gastrointestinal or appetite (n= ) indications. dronabinol was administered twice daily in % of patients, most commonly at doses of mg (n= ) and mg (n= ), or ( – ) mg dronabinol per day. the median number days receiving dronabinol was ( – ) days. the median time to the first dose of dronabinol was hours from admission. we selected the hours time point as a reason- able equivalent for our ‘pre’ and ‘post’ time periods for the control group. thus, the postperiod interval for controls was – hours after admission, whereas for cases the median post- period interval was – hours after admission. this differ- ence was not statistically significant (p= . ). opioid utilization study patients were high opioid consumers, with % of patients receiving­≥ ­mme­at­baseline.­the­change­in­opioid­consump- tion is shown in figure . among cases there was a significant reduction in opioid consumption from baseline with adjunctive dronabinol­ (− ­ ( )­mme,­p< . ),­while­ the­change­ in­ opioid consumption for controls was unchanged from baseline (− ­( )­mme,­p= . ).­this­resulted­in­a­ninefold­greater­ reduction in opioid consumption for cases versus controls that was­significantly­different­between­pairs­(difference:­− ­mme,­ p= . ) (table ). nineteen ( %) cases reported using marijuana. in this subset, opioid consumption was significantly reduced with adjunctive dronabinol­(− ­( )­mme,­p< . )­versus­a­non-­significant­ increase in opioid consumption in matched controls ( ( ) mme, p= . ) (figure ). the difference between matched pairs­ was­ statistically­ significant­ (difference:­ − ­ mme,­ p= . ) (table ). change in mme: mean change in total mme consumption over hours on treatment minus hours at baseline, as defined for cases and controls in figure . on treatment: first hours with adjunctive dronabinol (cases) or – hours after admission (controls). secondary outcomes there was no difference in opioid use on- treatment for the dronabinol group versus the matched controls ( mme vs mme, p= . ). the average change in pain nrs scores were similar­between­cases­ and­ controls­ (− . ­vs­− . ,­p= . ),­ although there was a borderline higher pain nrs score in the dronabinol group on treatment (p= . ) and at baseline (p= . ) compared with the matched controls (tables and ). non- opioid multimodal pain adjuncts included acetamino- phen (n= , %), cyclobenzaprine (n= , %) and metho- carbamol (n= , %). fewer than % of patients received ketorolac (n= ), gabapentinoids (n= ) and orphenadrine (n= ). the average change in non- opioid adjuncts on treatment from the baseline period were similar for the dronabinol group versus the matched controls (table ). acetaminophen use was greater for cases than matched controls in the baseline and treatment time periods, although there was no difference in the reduction in acetaminophen use over the hours treatment period from baseline between groups (p= . ). discussion this is the first study to examine the effect of dronabinol for acute pain management following traumatic injury. these o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://tsa co .b m j.co m / t ra u m a s u rg a cu te c a re o p e n : first p u b lish e d a s . /tsa co - - o n f e b ru a ry . d o w n lo a d e d fro m http://tsaco.bmj.com/ schneider- smith e, et al. trauma surg acute care open ; :e . doi: . /tsaco- - open access figure box- and- whisker plot of the hours total change in opioid consumption (mme) among all cases (n= ) and their matched controls (n= ), and patients who used marijuana and received dronabinol (n= ) and their matched controls (n= ). the box with line is the median and upper and lower quartiles, the x is the mean, and the points outside the box are outliers. table matched cohort outcomes mean (se) dronabinol cases (n= ) non- dronabinol controls (n= ) difference p value primary outcome change in mme − . ( . ) − . ( . ) − . ( . ) . change in mme* − . ( . ) . ( . ) − . ( . ) . secondary outcomes mme on treatment . ( . ) . ( . ) − . ( . ) . pain nrs on treatment . ( . ) . ( . ) . ( . ) . change in pain nrs − . ( . ) − . ( . ) . ( . ) . change in non- opioid multimodal pain adjuncts acetaminophen, mg − ( ) − ( ) − ( ) . cyclobenzaprine, mg − . ( . ) ( . ) − . ( . ) . methocarbamol, mg . ( ) − ( ) ( ) . *cases using marijuana (n= ) and their matched controls (n= ). mme, morphine milligram equivalents; nrs, numeric rating score. preliminary data suggest adjunctive dronabinol used as part of a multimodal analgesia regimen may result in a marked reduction in opioid consumption. the opioid- sparing effect appears to be more pronounced in patients who are marijuana users. adjunctive dronabinol did not lead to corresponding reductions in pain scores, although both groups experienced similar reductions in pain and the dronabinol group achieved this reduction while also significantly reducing their opioid consumption. the promising results of this study have led us to initiate a randomized controlled trial to formally evaluate the efficacy of dronabinol for reducing opioid consump- tion following traumatic injury (clinicaltrials.govidentifier: nct ). there is little research for cannabinoid use in acute pain management. a systematic review assessed the analgesic efficacy of cannabinoid medications in acute pain management in seven studies, which included a total of patients. in this review, article acute pain was defined as ‘pain of recent onset and probably limited duration’, which aligns with our definition of acute pain following traumatic injury. of the seven cannabi- noid studies, two studies included dronabinol. buggy et al randomized­patients­ : ­to­Δ - thc mg versus placebo for pain related to elective abdominal hysterectomies in patients. a single dose was given on the second postoperative day when patients requested analgesia, with no statistical difference in pain scores at rest and movement between the groups. in a study by seeling et al, patients were either given dronabinol mg or placebo for acute pain following radical prostatectomy with regional lymphadenectomy; no differences in the resting pain score were observed between groups. aligning with the above studies, our matched cohort study also demonstrated no significant difference in pain scores among patients who received dronabinol compared with their matched controls. however, pain scores are subjective and thus may not be the most appropriate measure of effi- cacy when examining acute pain management. the addition of dronabinol resulted in reduced opioid consumption that coincided with reduced pain scores in both groups, suggesting a beneficial opioid- sparing effect of dronabinol in acutely painful conditions. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://tsa co .b m j.co m / t ra u m a s u rg a cu te c a re o p e n : first p u b lish e d a s . /tsa co - - o n f e b ru a ry . d o w n lo a d e d fro m http://tsaco.bmj.com/ schneider- smith e, et al. trauma surg acute care open ; :e . doi: . /tsaco- - open access as the usa is currently fighting an opioid epidemic, where the centers for disease control and prevention estimate americans are dying daily from opioid overdose, the use of dronabinol to decrease opioid use is an attractive option. colorado was a leading state in legalizing both medical and recreational marijuana. the colorado department of public health environment estimates that . % of adults use mari- juana in some form (inhalation, ingestion). because our study showed that the opioid- sparing effect of dronabinol may be greatest in patients who use marijuana, use of dronabinol adjunctively may benefit nearly half of the state’s population. severe pain is commonly experienced following traumatic injury and needs to be treated with medication. there are several reasons we believe adding adjunctive dronabinol may be favorable to increasing narcotic dosages in patients whose pain is not well managed: ( ) the addictive tendency of mari- juana and the negative effects of that addiction on patient morbidity and (especially) mortality are magnitudes less for marijuana than for narcotics; ( ) in the acute care setting, the effects of dronabinol on vascular neurological response and respiratory depression are not as significant as with narcotics, especially when dronabinol is used adjunctively to reduce or maintain the opioid regimen rather than increasing narcotic dosages to detrimentally high levels; ( ) our providers use dronabinol only during the initial phase to get the patient through the acute trauma episode. patients are not routinely discharged with dronabinol, and other pain medications are conservatively prescribed at discharge. this practice limits over prescription of dronabinol and narcotics. one of our study’s objectives was to determine whether the effect of dronabinol is more pronounced in marijuana users. the gestalt is that home marijuana users would have a more profound decrease in their opioid consumption with dronab- inol; this has not yet been reported in the acute setting and is one of the main findings of our study. nearly half of patients who received dronabinol were not current marijuana users, reflecting the decision to prescribe dronabinol to be multifac- torial and not based solely on marijuana use. still, there were differences in marijuana use between cases and controls, likely reflecting clinicians’ preference to prescribe dronabinol to marijuana users. a limitation of this study is that patients were not matched by self- reported marijuana use. our randomized controlled trial uses a stratified block randomization design that randomizes patients : based on pre- injury marijuana use; this design should elucidate whether there is an opioid- sparing effect of dronabinol, and whether it is similar for mari- juana users and marijuana- naïve patients. additional limitations to our study exist. first, we did not examine adverse events, although no cases needed to be discontinued from dronabinol. other studies have suggested that any beneficial effects of cannabis- based medicines may be offset by potential harms. it is possible that the risk versus benefit ratio may be more favorable in acutely painful conditions because the treatment period and total dosing should be less than that seen in chronic painful conditions. the median treatment period in our study was days, whereas a cochrane review of cannabis- based medicines for chronic painful neuropathy included studies with a treatment duration of – days. second, controls did not receive dronab- inol, so the pretreatment period was estimated to be the first hours from admission. this estimate was based on the median time from admission to first administration of dronab- inol among cases of hours. while there were no differences in the time from admission to the start of the ‘post’period for cases and controls, some cases may have been prescribed dronabinol later in the hospital stay, whereas the ‘post’period for all controls was – hours from admission. third, we do not know why controls were not prescribed dronabinol or if they refused dronabinol. fourth, our results may not be generalizable to hospitals in states where marijuana is illegal because they might expect a lower prevalence of marijuana use among the trauma population. fifth, marijuana use was based on self- report because only patients had a urine toxicology screening; of those, patients tested positive for drugs, including cases and controls. sixth, we do not know whether patients who received dronabinol were more satis- fied with their hospital pain control compared with those who received opioids without adjunctive dronabinol; satisfaction could be considered a more relevant outcome to self- reported pain nrs scores. finally, we did not study whether other cannabinoids can be used as analgesics in acutely painful condi- tions because our institution does not have other cannabis- based medications on formulary. conclusions the results of this matched cohort study suggest adjunctive dronabinol reduces opioid consumption in patients with acute pain following traumatic injury. the opioid- sparing effect of dronabinol may be greatest in patients who use marijuana. we are currently enrolling a prospective randomized controlled trial of approximately patients to evaluate the efficacy of dronab- inol for managing acute pain following traumatic injury. acknowledgements the authors would like to thank wendy lovato at st. anthony hospital for assistance with data acquisition. contributors all authors made substantial contributions to the manuscript as follows: es- s is responsible for literature search, data acquisition and drafting the manuscript. ks is responsible for data analysis, interpretation of data and drafting the manuscript. cs is responsible for study conception, interpretation of the data and critical revisions. cm is responsible for literature search, data acquisition and manuscript revisions. rmm is responsible for interpretation of the data and critical revisions. db is responsible for interpretation of the data and critical revisions. all authors provided final approval of the submitted manuscript. funding the study was investigator initiated. internal funding was provided by st. anthony hospital. competing interests none declared. patient consent for publication not required. ethics approval the study was approved by the institutional review board of st. anthony hospital (catholic health initiatives) with a waiver of informed consent. provenance and peer review not commissioned; 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[delta( )- tetrahydrocannabinol and the opioid receptor agonist piritramide do not act synergistically in postoperative pain]. anaesthesist ; : – . wide- ranging online data for epidemiologic research (wonder). statistics ncfh, ed. atlanta, ga: centers for disease control and prevention, . m. s. marijuana use in colorado rises for adults, stays the same for kids. environmentdopha, ed: colorado department of public health and environment, . o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://tsa co .b m j.co m / t ra u m a s u rg a cu te c a re o p e n : first p u b lish e d a s . /tsa co - - o n f e b ru a ry . d o w n lo a d e d fro m http://dx.doi.org/ . /j.jpain. . . http://dx.doi.org/ . /j.jpain. . . http://dx.doi.org/ . / .wnl. . . c http://dx.doi.org/ . /bmj. . .ae http://dx.doi.org/ . / x http://dx.doi.org/ . / x http://dx.doi.org/ . /j.pain. http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /jama. . http://dx.doi.org/ . / .cd .pub http://dx.doi.org/ . /aas. http://dx.doi.org/ . /s - ( ) - http://dx.doi.org/ . /s - ( ) - http://dx.doi.org/ . /s - ( ) - http://dx.doi.org/ . /s - - - http://tsaco.bmj.com/ 	matched pilot study examining cannabis-­based dronabinol for acute pain following traumatic injury 	abstract 	introduction 	patients and methods 	study design and population 	dronabinol prescribing practice 	covariates 	outcomes 	statistical analysis 	results 	opioid utilization 	secondary outcomes 	discussion 	conclusions 	references journal of clinical medicine review advancements in parp targeted nuclear imaging and theranostic probes ramya ambur sankaranarayanan , susanne kossatz , , , wolfgang weber , mohsen beheshti , , agnieszka morgenroth and felix m. mottaghy , ,* department of nuclear medicine, university hospital aachen, rwth aachen university, aachen, germany; rambursankar@ukaachen.de (r.a.s.); mbeheshti@ukaachen.de (m.b.); amorgenroth@ukaachen.de (a.m.) department of nuclear medicine, university hospital klinikum rechts der isar, technical university munich, munich, germany; s.kossatz@tum.de (s.k.); w.weber@tum.de (w.w.) central institute for translational cancer research (translatum), technical university of munich, munich, germany department of chemistry, technical university of munich, munich, germany department of nuclear medicine and endocrinology, paracelsus medical university, salzburg, austria department of radiology and nuclear medicine, maastricht university medical center (mumc+), maastricht, the netherlands * correspondence: fmottaghy@ukaachen.de; tel.: + - - - received: june ; accepted: july ; published: july ���������� ������� abstract: the central paradigm of novel therapeutic approaches in cancer therapy is identifying and targeting molecular biomarkers. one such target is the nuclear dna repair enzyme poly-(adp ribose) polymerase (parp ). sensitivity to parp inhibition in certain cancers such as gbrcamut breast and ovarian cancers has led to its exploitation as a target. the overexpression of parp in several types of cancer further evoked interest in its use as an imaging target. while parp -targeted inhibitors have fast developed and approved in this past decade, determination of parp expression might help to predict the response to parp inhibitor treatment. this has the potential of improving prognosis and moving towards tailored therapy options and/or dosages. this review summarizes the recent pre-clinical advancements in imaging and theranostic parp targeted tracers. to assess parp levels, several imaging probes with fluorescent or beta/gamma emitting radionuclides have been proposed and three have advanced to ongoing clinical evaluation. apart from its diagnostic value in detection of primary tumors as well as metastases, this shall also help in delivering therapeutic radionuclides to parp overexpressing tumors. henceforth nuclear medicine has now advanced towards conjugating theranostic radionuclides to parp inhibitors. this paves the way for a future of parp -targeted theranostics and personalized therapy. keywords: parp inhibition; parp tracers; parp theranostic probes; pet/spect imaging; auger and alpha emitters . introduction dna damage is recognized and repaired specifically by different repair mechanisms [ ]. one of the early sensors of dna single strand breaks is poly adp-ribose polymerase (parp ), a nuclear protein. parp and other parp family members function as a catalyst for poly (adp-ribosylation) (parylation) using nicotinamide adenine dinucleotide (nad+) as the adp donor [ ]. parp recognizes strand breaks, binds to the dna backbone, recruits acceptor proteins, post-translationally modifies them by transferring par polymers (par-ylation) and also undergoes auto-par- ylation [ , ].importantly, in cases of defective double strand dna damage j. clin. med. , , ; doi: . /jcm www.mdpi.com/journal/jcm http://www.mdpi.com/journal/jcm http://www.mdpi.com http://dx.doi.org/ . /jcm http://www.mdpi.com/journal/jcm https://www.mdpi.com/ - / / / ?type=check_update&version= j. clin. med. , , of repair mechanisms (homologous recombination), possibly due to mutated breast cancer / (brca / mut) proteins, parp -mediated processes can take over the repair [ , ]. unlike healthy cells, rapidly proliferating cancer cells are under higher replicative stress, which leads to genomic instability causing parp overexpression. hence, parp is a critical protein, which has become an important target for inhibition therapies, especially in brca / mut patients. this scenario, where simultaneous loss-of-function/inhibition of two complementary proteins resulting in cytotoxicity, is termed “synthetic lethality”. till now, various parp inhibitors (parpis) such as olaparib ( ) [ ], rucaparib ( ) [ ], niraparib ( ) [ ] and talazoparib ( ) have been clinically approved by the food and drug administration (fda) and european medicine agency (ema) [ , ]. the additional use of dna damaging agents might lead to an increased dependence on parp activity for repair and by this would amplify a cells/tumors sensitivity to parp inhibition. combination therapies of parpi with other dna damaging therapies such as radiation therapy, chemotherapeutic drugs (e.g., doxorubicin) [ ] or anti-angiogenic therapy and immunotherapy are being assessed to improve cytotoxicity, and by this, the therapy efficacy and outcome as discussed in a recent review [ ]. with high prominence of parpi in cancer therapy, determining parp expression levels in tumors might help to predict the sensitivity to parp -targeted therapy. parp-imaging agents are potentially useful in the pre-treatment phase as a guidance to predict therapy response and to facilitate patient stratification, and in interim and post-treatment phases to quantify tumor response to therapy. initially, fluorescent tagged olaparib derivatives were developed for optical imaging, one of which (parpi-fl) has progressed to a clinical trial for oral cancer detection upon topical application. report on the first in-human trial shows quantifiable parpi-fl-based tumor detection in human tissue specimens and feasible application methods for esophageal tumor imaging upon topical application of parpi-fl [ , ]. the need for depiction of parp expression on the whole-body level initiated design and development of radiolabeled parpi derivatives, which led to non-invasive determination of parp expression by imaging modalities like positron emission tomography (pet) or single photon emission computed tomography (spect). synthesis of radiolabeled parp -targeting imaging probes have been in an accelerated drive in this past decade. radiohalogens such as f, i, and i are favored for radiolabeling parpis rather than radiometals ( ga, mtc) due to their ease of radiolabeling without the need of a chelator, apart from their favorable physical characteristics [ ]. nevertheless, there is a need to summarize and identify the advantages to determine the most relevant application and suitable candidates for clinical application. hence, the purpose of this review is to compile and update on important parp -targeted radio-theranostics developed recently, in the context of their specific applications in cancer diagnosis and therapy. figure illustrates the different approaches in parp mediated therapeutic, diagnostic and theranostics. j. clin. med. , , of figure . schematic representation of parp -targeted therapy and imaging approaches. (a) upon no treatment, parp -mediated repair enables cancer cell proliferation and tumour growth. (b) pet/spect radionuclide-conjugated parp inhibitors enable imaging of the tumour tissues and parp -expression levels. (c) parp inhibitor-based targeted therapy causes "synthetic lethality", thereby inhibiting dna repair mechanisms. (d) auger electron (displayed in picture), beta or alpha particle-emitting radionuclides are able to cause dna damage apart from synthetic lethality, and functions as a "two-hit" strategy and enhances apoptosis of cancer cells. for optimal synthetic lethality, supplementation with parp inhibitors would be required. . pharmacokinetic considerations clinically approved parpi core structures or their derivatives have been used for labelling with radionuclides (table ). ideally, pharmacokinetic defining parameters like the parent drug’s molecular weight (mw), charge, serum stability, vascular retention (% plasma protein binding/%ppb), lipophilicity (log poct or log pchi values), affinity (ic ), and parp specificity should remain largely unchanged. these parameters will influence the in vivo behaviour such as tumor uptake and target to background ratios (tbr). most reported radiotracers have shown an increase in lipophilicity and a predominantly hepatobiliary clearance. for example, the radionuclide conjugation of olaparib elevated lipophilicity for olaparib derivatives f- and f-parpi from log poct = . to log poct = . and log pchi = . , respectively [ , ]. j. clin. med. , , of table . summary of the parp tracers, their respective precursors, modality of imaging, and their current stage of development. chemical structures of parent parp inhibitors and their derivative radiotracers show structural modifications (green) and radionuclides (red). modality of imaging shows their pet (positron emission tomography)/spect (single photon emission computed tomography) tracer capability. parent tracer modality of imaging development phase olaparib f- zmuda et al., [ ] pet, optical preclinical j. clin. med. , , x for peer review of table . summary of the parp tracers, their respective precursors, modality of imaging, and their current stage of development. chemical structures of parent parp inhibitors and their derivative radiotracers show structural modifications (green) and radionuclides (red). modality of imaging shows their pet (positron emission tomography)/spect (single photon emission computed tomography) tracer capability. parent tracer modality of imaging development phase olaparib f- zmuda et al., [ ] pet, optical preclinical f-parpim carney et al., [ ] pet, optical clinical trials nct , nct f-olaparib wilson et al., [ ] pet, optical preclinical i-parpi salinas et al., [ ] pet, therapy preclinical i-parpi zmuda et al., [ ] pet, optical preclinical f-parpi-fl keliher et al., [ ] pet, optical preclinical o b ff c h c h n n o n n f o n h n f-parpi carney et al., [ ] pet, optical clinical trials nct , nct f-olaparib wilson et al., [ ] pet, optical preclinical i-parpi salinas et al., [ ] pet, therapy preclinical i-parpi zmuda et al., [ ] pet, optical preclinical f-parpi-fl keliher et al., [ ] pet, optical preclinical f- e reilly et al., [ ] pet, optical preclinical j. clin. med. , , of table . cont. parent tracer modality of imaging development phase f-bo reiner et al., [ ] pet, optical preclinical cu-dota-parpi huang et al., [ ] pet, therapy preclinical i-mapi pirovano et al., [ ] spect, therapy preclinical rucaparib f-ftt zhou et al., [ ] pet, optical clinical trials nct , nct , nct , nct , nct , nct , nct , nct . f-wc-dc-f zhou et al., [ ] pet, optical preclinical i-kx- - anderson et al., [ ] spect, optical preclinical j. clin. med. , , of table . cont. parent tracer modality of imaging development phase i-kx- makvandi et al., [ ] spect, therapy preclinical at-mm makvandi et al., [ ] therapy spect preclinical nad+ f-supar shuhendler et al., [ ] pet, optical preclinical due to the predominant nuclear target localization, parpis usually diffuse passively across the plasma and nuclear membranes. for optimal passage across lipid bilayers, lipophilicity of log p: . – . is optimal [ ]. a further increase in lipophilicity (log poct > . ) decreases passive diffusion across biological membranes, leading to low signal-to-noise ratios and hence is disadvantageous. together with this, low dissociation constants (ki = . nm− nm) prevent passive diffusion of parpis out of the nucleus, avoiding quick wash-out [ ]. similarly, high %ppb (> %) reduces the tissue penetration ability, and thus decreases the drug uptake by organs, and would require a higher dosage application [ ]. in the case of brain malignancies like glioblastoma multiforme (gbm), the penetration of the blood–brain barrier (bbb) is essential for imaging and therapy. for this, the optimal drug parameters are log poct: – , mw < da, and ppb < % [ ]. parpis have shown different bbb penetration abilities in preclinical studies. while talazoparib, olaparib, and rucaparib show limited penetration across intact bbb as they are liable to efflux by the bbb, veliparib and niraparib were shown to have better penetration [ , ]. however, results from a phase i clinical trial (oparatic trial) showed that olaparib was able to accumulate in marginal and core tumors in gbm patients who were treated with low doses of temozolomide [ ]. tracers with favorable in vitro characteristics are then investigated for in vivo biodistribution. in vivo, blood half-life, stability, tumor targeting, and parp specificity are essential parameters to understand the tracer behavior, its suitability to help delineate tumor vs. non-tumor tissue, and to identify targeting efficiency. it should be taken into consideration that biologically defined in vivo parameters like vascular permeability, tumor microenvironment, and cellular composition further impact the drug concentration and by this the efficacy of parp-targeted therapeutics. taken together, all these parameters play a critical role to define the properties of a diagnostic or theranostic agent at the cellular as well as the systemic level (i.e., drug delivery to tumor tissue). hence, optimal in vivo pharmacokinetics and related parameters are essential for clinical translation of parp theranostics. j. clin. med. , , of . imaging with parp-addressing tracers . . radio-fluorinated parp tracers the pet radionuclide f (half-life/t / = . min) is one of the most favored diagnostic radionuclides in parp imaging probes. f conjugated parpis like olaparib ( f-olaparib) [ ], olaparib derivatives ( f- [ ], f-parpi [ ]), and rucaparib derivatives ( f-fluorthanatrace ( f-ftt) [ ], f-wc-dz-f [ ]) have been evaluated for imaging of parp expression. the most recently published parp tracer is an f-radiolabeled direct analog of olaparib ( f-olaparib) that has caught significant attention [ ]. even though a low radiochemical activity yield of % ± % may be discouraging, its identical chemical composition to olaparib distinguishes it from other diagnostic tracers that are under investigation. since it has similar pharmacokinetic and pharmacodynamic properties as its parental drug, apart from its use as a parp targeting tracer, it can also provide insights into the systemic behavior of olaparib with regard to tumor accumulation and therapeutic dosage. initial in vitro characterization using blocking studies in psn- , miapaca- , and capan- cell lines showed in vitro parp specificity. in a subcutaneous pancreatic ductal adenocarcinoma model, in vivo tumor uptake was enhanced upon radiation, confirming radiation-induced parp overexpression. recently reilly et al., developed f- e derived from the olaparib derivative azd , for parp imaging in neurodegenerative diseases. however, in spite of high parp affinity (ic = . ± . nm, log p = . ), the tracer was seen to be impenetrable across the bbb both in rodents and in primate models, which suggests the lack of bbb penetration ability of the parental drug [ ]. previously, f-conjugated tracers were developed as olaparib derivatives ( f-parpi and f- ) and characterized in gbm models. both tracers have similar structures: f-parpi and f- have fluorobenzamide and methylfluorobenzamide moieties respectively in place of the isopropyl moiety of olaparib [ , ]. recently, a simplified process for the synthesis of f-parpi has been reported, reducing the synthesis time from min to min, although the radiochemical yield obtained was . % compared to % reported earlier [ ]. both f-parpi and f- have been shown in subcutaneous models promising tumor-to-muscle ratios of . ± . and . ± . , respectively. while f-parpi showed an encouraging tumor-to-brain ratio of . ± . (orthotopic model). f- suffered from heavy defluorination (> . %id/g bone uptake, h p.i), preventing it from further investigation [ ]. in further preclinical studies, f-parpi was used to quantify target engagement of clinical parpis (olaparib and talazoparib) in non-small cell lung cancer (nsclc) models upon co-treatment. this study enabled deciphering dosage regimens for complete drug–target engagement (olaparib: mg/kg; talazoparib— mg/kg) and tumor residence times (half-lives: olaparib— . h; talazoparib— . h) [ ]. it was also used to monitor the target engagement of talazoparib where therapeutic and subtherapeutic dosage was distinguishable by differences in f-parpi uptake [ ]. f-parpi was also studied as an alternative to f-fdg for the delineation of oral cancer tissue from surrounding healthy tissue [ ]. furthermore, f-parpi has also proved to better differentiate radiation necrosis from tumors compared to f-fet (in gbm models), and malignant from inflamed lymph nodes in b-cell lymphoma models [ , ]. apart from olaparib derivatives, a rucaparib derivative, f-wc-dz-f has been characterized in a subcutaneous prostate cancer model [ ]. structurally, it is an analogue of f-ftt, which is currently in clinical trials. f-wc-dz-f was developed by replacing the i in i-kx with f, in order to improve the pharmacokinetics, in vivo tumor uptake and enhance blood stability. the tumor uptake was close to % id/c.c. ( h p.i) as detected by pet imaging. however, ex vivo biodistribution data from naive mice showed unspecific uptake in tissues such as bone and muscle. additionally, since tbrs and correlation with parp expression levels were not reported, further studies will be needed to validate this tracer. other olaparib-derived f- tracers ( f-ftt, f-bo and the dual modality pet/fluorescent imaging agent f-parpi-fl) have also been investigated. as they were already reviewed j. clin. med. , , of elaborately by previous reviews, they are spared from detailed discussion in this article to avoid redundancy [ , , , ]. briefly, f-bo has been tested in ovarian, breast, and pancreatic cancer models where uptake correlated with parp expression. f-parpi-fl showed higher specificity. however, it showed heavy in vivo defluorination (> % id/g bone uptake). f-ftt was first validated in a subcutaneous breast cancer model showing promising tumor uptake ( % id/cc, h p.i) [ ]. it was also successfully validated in vitro and in vivo breast cancer models to image parp expression levels and has progressed to clinical trials [ ]. besides parpi-derived tracers, a substrate-based tracer ( f-labelled nad analog), named f – substrate-based parp activity radiotracer ( f-supar) has been developed for imaging parp- / activity. the n of the adenine moiety in nad is substituted with fluorinated poly-ethylene glycol (f-peg ) prosthetic groups. blocking experiments showed significant uptake reduction in an orthotopic breast cancer model but not in a subcutaneous model. however, correlation of f-supar accumulation and par levels in tumor sections proved the tracer specificity. pet images post external beam irradiation showed an increase in tumor uptake. the major disadvantage is that, although the modification of nad+ is optimized for parp / uptake, nad+ is not a parp -specific substrate, as seen in vitro and in vivo by the background uptake possibly by other oxidoreductase enzymes. moreover, rapid clearance and low serum stability (t / < min) are other hindrances for its use as a parp imaging agent [ ]. while the number of investigations on synthesizing and optimizing new parp tracers are fast growing, two tracers, f-parpi and f-ftt, have now progressed to phase i clinical trials. there are currently two phase i clinical trials related to f-parpi. in a head and neck cancer imaging trial (nct ), f-parpi administration was safe and well tolerated. it was shown that all f-fdg avid lesions also showed f-parpi uptake with comparable contrast ratios. interestingly, several lymph nodes that were f- parpi, but not f-fdg avid, resolved after chemoradiation [ ]. in a second, ongoing clinical trial, f-parpi is investigated for imaging of brain tumors (nct ). the other parp tracer undergoing clinical evaluation is f-ftt. several trials are ongoing, which are listed in clinicaltrials.org to study f-ftt as a parp tracer pre-/post-treatment, in a wide range of cancers like ovarian (nct , nct ), breast (nct ), pancreatic (nct ), prostate (nct ), and gbm patients (nct ). the first in-human trials showed promising uptake by tumor tissue in a cholangiocarcinoma patient [ ]. recently, a phase i trial report using f-ftt in a cohort of ovarian cancer patients pre-treated with chemotherapy showed discernible tumor uptake, inter-tumor heterogeneity, and positive correlation between high f-ftt uptake and platinum-treatment resistance (figure ). moreover, the study reports no correlation between uptake of f-fdg and f-ftt. f-fdg and f-ftt were shown to give complementary information enabling detection of metastatic omental lesions. immunohistochemistry of clinical specimens showed parp overexpression in lymph nodes with and without nodal disease. as a result, an accurate differentiation between malignant and reactive/inflammatory lymph nodes was not possible. even though the study mentions high f-fdg and low f-ftt uptake in one patient having inflammatory lymph nodes, further investigation is required with a larger cohort [ ]. . . radioiodinated parp tracers parp inhibitors labeled with different pet/spect radioisotopes of iodine ( / / / i), have also been developed initially as imaging tracers and furthermore, their theranostic efficacy was explored. since iodine has a larger molecular weight, the pharmacokinetics of radio-iodinated tracers vary greatly from the parent drug. in , two independent studies reported the synthesis of iodinated olaparib derivatives. both studies characterized the same tracer backbone structure using different synthesis protocols and labelled with different radioisotopes of iodine ( / i and / i -parpi) [ , ]. j. clin. med. , , of figure . pet/ct images of f-ftt uptake in ovarian cancer patients. pet/ct images from a clinical trial (nct ) in three ovarian cancer patients show a wide range of f-ftt uptake in tumor lesions. standard uptake value (suv) ranges from (top-left) to (top-right). yellow arrows indicate sites of tumor. reproduced with permission from makvandi et al., titled “a pet imaging agent to evaluate parp expression in ovarian cancer”, published by the journal of clinical investigation, [ ]. in the report by salinas et al., / i -parpi (t / = . d for i; . d for i) was characterized and optimized as a potential pet/spect tracer in gbm models. biodistribution at . h post i.v injection showed a remarkable tumor-to-brain ratio of . ± . , and a tumor-to-muscle ratio of . ± . , confirming tumor targeting and retention. unexpectedly, in their biodistribution studies with a subcutaneous model, there was no direct correlation between an increase in specific activity of the administered tracer with an increase in tumor-to-muscle ratio. but heavy deiodination was seen, as the tumor-to-thyroid ratio was . ± . , in spite of prior thyroid blocking with sodium iodide (nai). this is possibly due to the tracer oxidation in the liver. notably, tumor uptake at h in a u subcutaneous model was reported as . % id/g (tumor: muscle = ~ . ) whereas in the u orthotopic model it was . % id/g (tumor: muscle = . ± . ) despite the same parp expression levels in both u and u tissues. this can be explained by a possible disruption in the bbb of the orthotopic model, improving passive targeting to the brain [ ]. similarly, zmuda et al. reported conjugation of spect radionuclides / i, (t / = . h for i; . d for i) to the same precursor and similar coupling conditions as salinas et al. the biodistribution in a subcutaneous gbm model showed a tbr similar to that of the earlier reported tracer. even though high plasma protein binding ( . %) is tolerable for imaging of primary tumor due to bbb disruptions, it is not optimal for parp imaging of metastasis with an intact bbb [ ]. these two studies were the first reports on radioiodine tagging as a convincing imaging strategy for parp expression. in , two studies reported the synthesis and biodistribution of radio-iodinated benzimidazole parpi (ag ) derivatives ( i-kx- - and i-kx ), analogous of f-ftt [ , ]. though i-kx showed high tumor uptake (~ % id/g at h p.i), olaparib pre-injection (i.p.) did not reduce tracer accumulation in the tumor, which is the standard way to evaluate parp specificity. furthermore, biodistribution of i-kx- - showed heavy deiodination (thyroid uptake ~ % id/g vs. tumor uptake ~ %id/g) at h p.i. j. clin. med. , , of . . parp targeted theranostics most recently, theranostic parp radio-ligands have been developed. here, therapeutic radionuclides, i.e., α, β-, and auger emitters, were conjugated to parpis with the goal of effectively inflicting dna damage on cancer cells, as binding to parp leads to radioactive decay events in close proximity of the dna. importantly, these radionuclides also emit either positrons or γ-rays and hence allow evaluation of the tracer’s in vivo behavior via pet/spect imaging. for theranostic parp tracers, their therapeutic effect is not mitigated by parp inhibition, but the parp inhibitor acts as a delivery vehicle for the cytotoxic radiation. theranostic radionuclides were either chosen for their short range, high linear energy transfer (let) alpha (α) particle emissions (let: – kev/µm upto µm), auger electron emissions (let – kev/µm, upto ~ . µm), or long range, low let beta (β) emissions (let ~ . kev/µm, upto cm) [ ]. . . . α- emitter theranostics preclinical studies have been reported in neuroblastoma models with at-mm , a rucaparib derivative (kx ) conjugated to an α- particle-emitting spect tracer at (t / = . h). ex vivo biodistribution showed a rapid renal clearance, but tumor uptake increased from ~ % id/g at min p.i to % id/g at h p.i. upon intravenous administration, with a promising tumor-to-blood ratio of . . therapeutic efficacy in mice showed a remarkable increase in median survival from d (untreated) to d (single dose) and even further to d (multiple fractionated doses). these results are promising, especially as the animals showed no weight loss, no tumor regrowth, and minimal residual tumor at the end of d, indicating low systemic toxicity at efficacious doses [ ]. . . . β- emitter theranostics the radionuclide cu (t / = . h), which emits β- particles for therapy and positrons for pet imaging was conjugated to dota-parpi, derived from olaparib [ ]. this tracer was characterized in mesothelioma models, with biodistribution showing peak tumor uptake at h p.i ( . ± . %id/g), however tumor retention was poor as the tumor-to-muscle ratio at h was ~ . moreover, the conjugation of dota moiety reduced the binding affinity and thereby the cytotoxicity by times. this would require an increase in the therapeutic dosage, which will in-turn increase systemic toxicity, and consequently limit its theranostic ability [ ]. the earlier described i-parpi can also be used as a theranostic compound, since i is a γ and β- emitter. jannetti et al. investigated its therapeutic efficacy in a subcutaneous gbm model [ ]. intratumorally administered fractionated doses ( x of . mbq) over d slowed tumor growth, increasing median survival from d (“cold” i-parpi treated) to d ( i-parpi treated). two weeks after the last dose, tumor growth progression was observed and showed a linear growth rate similar to that of control (pbs) and “cold” i-parpi-treated cohorts. this can be explained by limited on-target residence time and/or the half-life (t / = d) of i. to mimic a convection enhanced delivery (ced), an osmotic pump mediated delivery into brain was investigated. in this orthotopic model, feasibility of strongly increasing brain uptake in tumor mice compared to naïve mice was shown, although the tumor vs. healthy brain tissue uptakes (tumor-to-brain ratio) was not reported. although intratumoral applications are used for targeted delivery into brain malignancies in clinical studies, tumor–brain delineation is critical to assess and avoid neurotoxicities. therefore, careful precaution with dosage is needed in case of intratumoral application of i in glioblastoma to avoid any risk of bystander effect on surrounding healthy brain tissues [ , ]. . . . auger emitter theranostics use of auger emitters ( / i) in parp theranostic agents was reported by lee et al., with i-kx . the cytotoxic efficiency in neuroblastoma cell lines treated with i-kx was - times higher than its non-radioactive precursor kx . dna damage induction was significantly higher compared j. clin. med. , , of to veliparib treatment as measured by ph ax fluorescence intensity [ ]. its parp specificity was demonstrated by makvandi et al., where parp ko ovarian cancer cell lines showed reduced i-kx uptake [ ]. however, further in vivo survival studies are required to evaluate its anti-tumor efficiency. another auger-emitting theranostic tracer, i-mapi (iodine- meitner-auger parp inhibitor), an isotopologue of i-parpi, has been studied in gbm models [ ]. survival increased from d to d upon intratumoral delivery. intratumoral delivery to an orthotopic model (using an osmotic pump) showed a further prolonged survival to d. of note, intrathecal delivery has reported to result in stress-related deaths in mice, which was attributed to the small volume of the murine skull, and hence should only be a limiting factor in small animal studies. these results support the note that auger emission-mediated anti-tumor efficiency is promising. further studies are required for a comparison of the therapeutic efficacies of the auger emitting theranostic probes i-kx and i-mapi. in neuroblastoma d solid tumor models, comparison of the cytotoxic efficiencies of i-kx with other parp -targeted ( at-mm ) or non-parp -targeted ( i-mibg) radiopharmaceuticals showed that i-kx was less effective compared to at-mm in terms of concentration, tumor dosage ( x lower per decay), and tumor-cell nuclei dosage ( x lower per decay) [ ]. the theranostic ability of at is comparably advantageous to i due to its superior cytotoxicity, and thereby low dosage requirement in addition to its favorable physical half-life. taken together, amongst the theranostic parp tracers, at-mm has shown the most promising in vivo anti-tumor efficiency. . future prospects and conclusion parp imaging is emerging as a novel tool for assessing parp expression in tumors and monitoring parp inhibitor therapy response in the clinic. the rising interest in this field is evident from the development of several tracers in a short time span. the parp tracers discussed in this work have been evaluated in various cancer types, which all show parp overexpression. in vivo tumor characterization facilitated by parp imaging could become a valuable instrument for personalized therapy in patients, which is the need of the hour. among the tracers reported, f-ftt and f-parpi have progressed to clinical trials showing promising results in ovarian cancer and head and neck cancer patients, respectively and are further investigated in several types of solid tumors. upon reproducible validation in the future, f-olaparib could also be a potential candidate for clinical trials due to its chemical identity to olaparib. some hurdles that lay before translation of other tracers include improving serum stability, optimizing tumor uptake, tackling in vivo dehalogenation, and avoiding off-target uptake. for theranostics, primary challenges include optimizations on a) tumor residence time vs. absorbed dose, b) tumor vs. clearance-organ uptake, c) compromise between t / of the chosen radionuclide and its therapeutic efficiency. among the reported theranostic compounds, the α emitting at-mm has shown encouraging anti-tumor effects. however, considerable cytotoxicity on clearance organs such as liver and stomach, as well as its susceptibility to de-astatination are persisting challenges. moreover, patients pre-treated with platinum-based chemotherapy show elevated parp levels in the tumor microenvironment. though this can lead to an overestimation of tumor size by imaging tracers, the high parp levels in the tumor microenvironment can enhance theranostic tracer uptake leading to better therapeutic efficacy. particularly for gbm, crossing the bbb is a roadblock for small molecule drugs including most parp inhibitors. feasibility of bypassing the bbb via intrathecal application or intratumoral delivery by ced was shown preclinically and could be an approach to efficiently deliver theranostic parpi to brain malignancies [ ]. nevertheless, alternative minimally invasive strategies (e.g., intravenous injection) to address brain and other malignancies should also be developed to minimize the risk of infection, neural toxicity, pain, and patient discomfort. for non-invasive tumor-targeted delivery, nanomedicines could be a possible solution [ , ]. recent preclinical studies in glioma models present nanoparticles developed using poly-mpc coating as an effective way to cross bbb [ , ]. nano-formulations of j. clin. med. , , of parpi have already been reported, although none with radiotracers. nanoemulsion-based delivery of parpi-fl showed increased blood half-life, and delineated subcutaneous xenografts of small cell lung cancer [ ]. liposomal talazoparib showed significant increase in survival and reduction in side effects [ ]. loading radiolabeled drugs in nanoparticles is challenging, but could overcome current limitations for parp-targeted alpha and auger emitters, as this can potentially reduce off-target dna damage by diminishing off-target uptake [ ]. nanoscale delivery systems have proven to minimize side-effects, for e.g., the in-use lysosomal doxorubicin (doxil®) [ ]. this calls for further research towards developing mechanisms for targeted delivery to tumors, which will improve their future prospects. taken together, parp overexpression in various cancers can be exploited as a molecular target in the clinic. imaging and therapy tracers have been developed with promising preclinical results and a number of relevant clinical applications have been outlined. upon optimization, some tracers are fast approaching clinical translation. author contributions: conceptualization, writing—original draft preparation r.a.s.; writing—review and editing, s.k., w.w., a.m., m.b. and f.m.m. all authors have read and agreed to the published version of the manuscript. funding: this work was supported by the deutsche forschungsgemeinschaft (dfg) in the framework of the research training group „tumor-targeted drug delivery" grant . fmm received research funding from the itn intricare of european union’s horizon research and innovation program under the marie sklodowska curie (grant ). acknowledgments: in this section you can acknowledge any support given which is not covered by the author contribution or funding sections. this may include administrative and technical support, or donations in kind (e.g., materials used for experiments). conflicts of interest: the authors declare no conflict of interest. abbreviations parp poly adp ribose polymerase nad nicotinamide 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	introduction 	pharmacokinetic considerations 	imaging with parp-addressing tracers 	radio-fluorinated parp tracers 	radioiodinated parp tracers 	parp targeted theranostics 	- emitter theranostics 	- emitter theranostics 	auger emitter theranostics 	future prospects and conclusion 	references developing an animal-assisted support program for healthcare employees etingen et al. bmc health services research ( ) : https://doi.org/ . /s - - - research article open access developing an animal-assisted support program for healthcare employees bella etingen *, rachael n. martinez , bridget m. smith , , timothy p. hogan , , laura miller , karen l. saban , , dawn irvin , becky jankowski and frances m. weaver , abstract background: employee burnout and its associated consequences is a significant problem in the healthcare workforce. workplace animal therapy programs offer a potential strategy for improving employee well-being; however, research on animal therapy programs for healthcare workers is lacking. this study aimed to evaluate the feasibility, acceptability and preliminary impact of an animal-assisted support program to improve healthcare employee well-being. methods: in this mixed-methods pilot intervention study, we implemented an animal-assisted support program in a multidisciplinary healthcare clinic at a large va hospital. the program included sessions over months, each approximately -h long. real-time mood data were collected from participants immediately before and after each session. participation rates were tracked in real time and self-reported at follow-up. data on burnout and employee perceptions of the program were collected upon completion via a survey and semi-structured interviews. differences in mood and burnout pre/post program participation were assessed with t-tests. results: participation was high; about % of clinic employees (n = ) participated in any given session, averaging participation in / sessions. mood (on a scale of = worst to = best mood) significantly improved from immediately before employees interacted with therapy dogs (m = . ) to immediately after (m = . ) (p = . ). employees reported significantly lower levels of patient-related burnout (e.g., how much exhaustion at work relates to interaction with patients) after (m = . vs. before, m = . ) participating (p = . ). qualitative findings suggested that employees were highly satisfied with the program, noticed an improved clinic atmosphere, and experienced a reduction in stress and boost in mood. conclusions: establishing an animal-assisted support program for employees in a busy healthcare clinic is feasible and acceptable. our pilot data suggest that animal-assisted programs could be a means to boost mood and decrease facets of burnout among healthcare employees. keywords: animal therapy, employee burnout, employee wellness, healthcare workers, organizational behavior © the author(s). open access this artic which permits use, sharing, adaptation, distrib appropriate credit to the original author(s) and changes were made. the images or other thir licence, unless indicated otherwise in a credit licence and your intended use is not permitte permission directly from the copyright holder the creative commons public domain dedica data made available in this article, unless othe * correspondence: bella.etingen@va.gov center of innovation for complex chronic healthcare (cincch), edward hines jr. va hospital, south th avenue ( h), hines, il , usa full list of author information is available at the end of the article le is licensed under a creative commons attribution . international license, ution and reproduction in any medium or format, as long as you give the source, provide a link to the creative commons licence, and indicate if d party material in this article are included in the article's creative commons line to the material. if material is not included in the article's creative commons d by statutory regulation or exceeds the permitted use, you will need to obtain . to view a copy of this licence, visit http://creativecommons.org/licenses/by/ . /. tion waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the rwise stated in a credit line to the data. http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / mailto:bella.etingen@va.gov etingen et al. bmc health services research ( ) : page of background burnout in the workplace is characterized by depletion of employees’ emotional resources and reduction of their feelings of success and achievement [ ]. within the healthcare setting, the experience of burnout among employees is associated with a number of negative out- comes, including poor mental [ ] and physical [ ] health, increased absenteeism [ ] and turnover intention [ , ], diminished job satisfaction [ ], and decreased healthcare quality and safety (e.g., more frequent medical errors, reduced empathy toward patients, diminished patient satisfaction) [ – ]. evidence suggests that burnout is highly prevalent among healthcare employees, impacting more than half of healthcare providers and staff [ , , – ]. these high levels of burnout may negatively impact the quality of patient care [ , ] and lead to increased turnover [ ], which can result in resource strain for the system and disrupt care continuity for patients. one strategy for improving morale in the workplace and protecting against the potential for burnout is offer- ing animal-assisted support programs for employees. evidence suggests that such programs can have signifi- cant positive impacts on employee well-being, and have been associated with reductions in workplace stress and absenteeism, and improvements in employees’ mood, health, productivity, job satisfaction, and work quality [ – ]. animal-assisted support programs have been successfully offered in select work settings (e.g., office settings, manufacturing, sales) [ , ]; however, there is limited literature to-date assessing the impacts of animal-assisted support on the well-being of healthcare employees working in clinical settings [ ]. the objec- tives of this study were to evaluate the feasibility, accept- ability and preliminary impacts associated with offering an animal-assisted support program for employees of a multidisciplinary healthcare clinic. methods data and participants design we completed a mixed-methods intervention pilot study using an explanatory sequential approach (collecting and analyzing quantitative followed by qualitative data). the study ran from spring to spring ; animal- assisted program sessions were held in late summer/ early fall of . participants/setting we implemented an animal-assisted support program in a multidisciplinary healthcare clinic housed within a large midwestern va hospital. we invited all providers and staff working in that clinic (n = ) to participate. study design intervention/implementation strategies to conduct the program visits for employees, we part- nered with a community-based, all volunteer animal therapy organization that had an existing relationship with the hospital for hosting animal-assisted support visits with patients. program planning was done in con- junction with clinic leadership and employees, and lead- ership of the animal therapy organization. we worked with clinic employees to determine program logistics, including where and when sessions would be held such that the most employees possible would have an oppor- tunity to participate. we worked with the animal therapy organization to determine appropriate duration for the visits and availability of volunteers to conduct visits during the days and times indicated as most convenient by the clinic employees. we held program sessions over the course of months. each session was approximately -h long and was held in a centrally located conference room within the clinic on monday/friday and tuesday/thursday on alternating weeks, in the mid-afternoon (around lunch- time). employees participated in the sessions as their schedule allowed; we did not standardize how long employees were able to interact with the dogs nor what activities they engaged in with the dogs (both of which were at the employee’s discretion). we used several strategies to support program imple- mentation. prior to program implementation, we distrib- uted a ‘key facts sheet’ highlighting important information about the program and an informational letter with pro- gram details and dates to all clinic employees. we placed a calendar on the door of the conference room indicating visit dates, and coordinated with the hospital’s cleaning staff to ensure they knew the room would need attention after each visit. when the program was initiated, we sent reminder emails to clinic employees and the dog handlers reminding them of sessions. during each visit, we placed additional signage outside of the conference room and at the front desk to remind employees that we were holding a visit at that time. data collection we collected data pre-, during, and post-program implementation: pre-implementation survey we fielded a baseline survey with clinic employees to gather information needed to refine and finalize program logistics and collect baseline data on employee outcomes (personal, work-related and patient-related burnout; interest in program participation; convenient days/times of day for participation; demographics). the survey along with an informational letter was distributed during etingen et al. bmc health services research ( ) : page of a clinic meeting to all staff in attendance and copies were also distributed to all clinic employees after the meeting to ensure those not in attendance at the meeting had the opportunity to participate. a reminder survey was distributed weeks later to optimize partici- pation. the survey took approximately – min to complete. session participation tracking and pre/post session feedback participation rates were tracked in real-time by the study staff. we worked with clinic leadership to ascertain the total number of employees per shift. participation was also self-reported on the post-implementation survey. in addition, each employee was asked to fill out a visual- analogue scale [ ] indicating their current mood imme- diately before and after each of their interactions with the therapy dog. post-implementation survey follow-up data on employee outcomes (e.g., personal, work-related and patient-related burnout), program par- ticipation (e.g., whether the respondent participated, how many sessions they participated in), and employee perceptions of the program were collected upon pro- gram completion using the follow-up survey and semi- structured interviews (see below). post-implementation survey distribution processes mirrored those used during the pre-implementation survey. semi-structured key informant interviews semi-structured interviews were conducted with key stakeholders (e.g., clinic employees, dog handlers) to examine perceptions of program feasibility and accept- ability, and overall experiences. all clinic employees and dog handlers were invited to participate in an interview. interviews were typically min in duration, were audio recorded, and subsequently transcribed verbatim. measures the following key outcomes were assessed: participation observed participation rates comprised the proportion of employees who participated in each session out of the number of employees typically on that shift during the day of the week we held that session. the overall pro- portion of clinic employees who participated in the pro- gram and the average number of sessions employees participated in were calculated based on data provided by respondents on the post-implementation survey. real-time mood real-time mood was measured using a visual-analogue scale created specifically for use in this study. the scale ranged from = worst mood to = best mood. burnout burnout was measured using the copenhagen burnout inventory (cbi), a valid and reliable measure of em- ployee perceptions of burnout [ ]. the cbi is com- prised of questions that map onto types of burnout (personal, work-related, and client (i.e., patient)-related burnout). higher scores indicate greater burnout. satisfaction and experiences on the post-implementation survey, we asked partici- pants to rate the extent to which they liked the program ( = not at all to = to a very large extent), and to tell us about their general experiences with the program using an open-ended, short-answer question. semi-structured key informant interviews we asked employees to comment on program feasibility (e.g., issues related to program participation and space), acceptability (e.g., issues related to program implementa- tion and impacts on their work experience), and general experiences with the program (e.g., perceptions of the dogs and dog handlers, how participation impacted their wellness and the general atmosphere of the clinic, their interest in participating in such a program in the future, and suggestions for improvement). we asked the dog handlers about feasibility issues, including perceptions of frequency and length of sessions and space, acceptability, including issues related to program implementation and setting, and general perceptions of the program, includ- ing how they thought the program was received by clinic employees. analyses adoption rates, real-time mood, burnout, and employee perceptions of the program were examined using descriptive statistics. differences in mood and burnout before and after interacting with the therapy dogs were assessed using t-tests. an alpha level of . was used to determine statistical significance. qualitative data from the semi-structured key inform- ant interviews was analyzed by two qualitative experts using an inductive and deductive data-driven coding approach [ , ] to identify key themes. an initial list of codes was created based on the major topics of inter- est covered by the interview guide; inductive codes were developed both within the deductive codes to reflect additional themes that arose from the data (i.e., inductive sub-codes) and separate from the deductive codes as war- ranted by the data. both qualitative experts coded each etingen et al. bmc health services research ( ) : page of transcript independently, and subsequently convened to discuss codes and resolve any discrepancies until full agree- ment was reached for each code. open-ended responses on the post-implementation survey detailing respondent’s perceptions of the program were analyzed similarly. statistical analyses were conducted using spss ver- sion (ibm corp., armonk, new york). qualitative analyses were conducted using nvivo version (qsr international pty ltd.). this study was approved by the appropriate va institutional review boards. results we received completed pre-participation mood scales fol- lowing approximately % of employee encounters with the animal-assisted support program and post-participation mood scales from approximately % of encounters. twenty-two completed pre-implementation surveys ( . % response rate) and completed post-implementation surveys ( . % response rate) were returned. we completed key informant interviews (five with clinic employees and five with dog handlers). a total of different dog handlers conducted visits for the study. survey participants were predominantly female, of white race and non-hispanic ethnicity, and included physicians, nurses, individuals with other clinical responsibilities, and non-clinical support staff (table ). interview participants were predominantly female, and represented a range of position types (e.g., physicians, nurses, individuals with other clinical responsibilities, non-clinical support staff). survey, mood scale, and adoption tracking results are pre- sented below. qualitative findings from the semi-structured interviews are included where appropriate, to offer additional insights. quotes are attributed to an “employee” generally to ensure anonymity among the small sample of participants. table survey participant demographics pre-imple female gender % (n = race white . % (n african american/asian/american indian/alaska native . % (n don’t know/not sure/would rather not say . % (n non-hispanic ethnicity . % (n age or younger . % (n or older . % (n role in va attending physician/nurse practitioner . % (n nurse . % (n other clinician/non-clinical support staff . % (n implementation processes participation participation in the program was high; on any given day we held a session, about % (range: – %) of the em- ployees working in the clinic (n = ) participated (fig. ), and survey responses indicated that employees (n = ) participated in of the visits on average (range: – ). interviews suggested that overall, employees were satisfied with the number of visits, when visits were held, and how long the therapy dogs were present during the visits. the program scheduling gave them opportunities to participate on days/times that their clinic schedule allowed. the length of each session provided a window of time that the employees could visit with the dogs, if even for a few minutes. some employees expressed that they wanted to participate more often and/or spend more time with the dogs, but were sometimes unable to because of the busyness of the clinic. facilitators and challenges for implementation the key informant interviews revealed a number of factors that influenced employee perceptions about program im- plementation. interviewees reported that the space used for the visits was somewhat small, but it was the best option for this clinic on the floor where their employees provide patient care. additionally, employees indicated that the proximity of the room enhanced program accessi- bility by allowing them to jump in to interact with the dog amid patient care/other clinic responsibilities, which was convenient and made it easier to participate. interviewees also noted that it was helpful to have the visits in the same room each session, and that the location was optimal given it was nearby employee workstations but easily avoidable for patients who may be leery of dogs. one em- ployee noted that, because the room was used for many mentation survey (n = ) post-implementation survey (n = ) ) % (n = ) = ) . % (n = ) = ) . % (n = ) = ) . % (n = ) = ) . % (n = ) = ) . % (n = ) = ) . % (n = ) = ) . % (n = ) = ) . % (n = ) = ) . % (n = ) fig. distribution of employee participation in program sessions etingen et al. bmc health services research ( ) : page of other purposes as well as the program, it was important to clean thoroughly after each visit. employees mentioned that seeing the program signage in highly visible areas increased awareness of when the dogs were visiting and facilitated participa- tion. additionally, employees reported that the kick- off meeting prior to program implementation and emails sent by the research team in advance of dog visits helped inform them of the program and when to expect the dogs in the clinic. dog handlers also offered insights about program im- plementation, providing suggestions for how to support the dogs and handlers. elements of the program imple- mented by the research team that were helpful to dog handlers included email reminders before each session, detailed directions to facility, and particularly, an escort from the lobby of the hospital to the clinic conference room, which dog handlers noted made them feel wel- comed. dog handlers suggested that reminders about the time necessary to park and interact with curious pa- tients and others in the hospital en-route to the clinic could also be helpful. program outcomes mood (table ) participating in the program significantly improved em- ployee’s mood in real-time (t( ) = − . , p = . ), with average reported mood scores improving significantly table self-reported employee mood and burnout before vs. after values represent means pre-participation mooda . patient-related burnout b . work-related burnout b . personal burnoutb . ameasured via the puppy mood scale bmeasured via the copenhagen burnout inventory (cbi) [ ] from immediately before the employees interacted with the therapy dog (m = . ) to immediately after (m = . ). anec- dotally, interviews revealed that employees experienced a positive mood boost from spending time with the dogs, which in turn, affected how they approached their subse- quent clinical responsibilities, as one employee expressed: “. . .[the puppy program sessions] did definitely improve my overall mood. so if i was seeing a vet- eran shortly thereafter, they would, of course, be the beneficiary of that mood.” burnout (table ) employees reported significantly lower levels of patient- related burnout (e.g., how much of one’s exhaustion at work relates to interaction with patients) after (m = . ) vs. before (m = . ) participating in the program (t ( )= . , p = . ). differences in average reported personal (pre = . vs. post = . , p = . ) and work- related (pre = . vs. post = . , p = . ) burnout were not significant, but trended in the hypothesized direc- tion. during the interviews, employees were asked to describe how the puppy program affected their overall work experience in the clinic. employees felt that the program offered a therapeutic break during their work- day, which reduced mid-day burnout. as described by one employee: program participation post-participation p-value . . . . . . . . etingen et al. bmc health services research ( ) : page of “. . .you might have a real busy day administratively or with patients, and obviously doing mental health as i do sometimes can be somewhat draining, and it gave you just that great recharge that you would need to kind of disconnect from your workday for a short period of time, and then that recharge that you need to go back in and start fresh and finish your day.” another employee described how participating in the program reduced their levels of stress over time, highlighting the importance of offering the program for multiple sessions: “. . . i didn’t feel any effects in the beginning. but, when i was a little more intentional about going to the pet therapy, and kind of settling myself down and participating a little bit with the animal and the trainer, i really did see some benefits. . . it just took me two or three, or four sessions to really kind of get into it and feel like, let’s see if it really does make a difference. and then when i really did make a connection then i really looked forward to going. and i was like, yeah, this really does help me feel a little better. and this is for me.” satisfaction and experiences post-implementation survey data indicated that employee satisfaction with the program and implementation was high, with % of respondents (n = ) reporting that they liked the program to a very large extent and another % to a moderate extent. employees gave the program re- sounding endorsements, reporting that the benefits were far-reaching, both for the individual and the clinic as a whole. interviewees similarly highlighted the positive interactions they had with the dogs and dog handlers, ex- pressing enjoyment from observing and petting the dogs and chatting with the dog handlers. employees also noted that the program stimulated social interaction and enhanced the atmosphere in the clinic, reporting that there was “excitability among the staff” when the dogs were in the clinic. employees mentioned that they would pop into each other’s offices on program sessions days to encourage one another to visit with the dog. from a dog handler’s perspective, the program offered an opportunity for coworkers to come together, observing that “.. .you could just tell they were relaxing, and chatting about other things, and not work.” employees also appreciated the respectful nature of the program, noting the steps taken to ensure that having the dogs in the clinic was not intrusive nor disruptive to workflow. in addition, qualitative findings suggest that the program had an unintended but positive indirect effect, influencing even those staff members who did not have much interaction with the dogs. for example, one em- ployee stated in an open-ended survey response that they “enjoyed how much [their] colleagues enjoyed [the dogs]. it appeared to lift the morale on this unit.” for those who did participate, the benefits extended beyond the workplace and for some, followed them home. one employee expressed: “i think that it definitely contributed on some level to my wellbeing or just decreasing my stress by a little, and distracting me, or giving you an exposure that. . .for some people who don’t have pets, [don't get] to have. i went home and talked about the ani- mals, brought pictures of the animals, so it added a lovable dimension to my life. and i think that it’s got potential to be something more, when you’re really looking at that big employee wellness picture. you know, it could really be beneficial.” importantly, interviewees were appreciative that this program was offered specifically to employees, with the intention of improving staff well-being. one employee articulated: “. . .it helped me to realize that the va was trying to do something to help me. you know, because we’re always really focused on helping the vet[erans], and making the vet[erans] feel at home, and it was like, oh, it’s nice that they’re thinking that we need to take care of ourselves too, in order to do a good job with our vet[eran]s.” discussion to the best of our knowledge, this is among the first published accounts of the feasibility, acceptability and preliminary impacts of using animal-assisted support within a healthcare setting to improve workforce well- being. this project provides the foundation for future research, including effectiveness trials, by showing that implementing this type of program in a busy clinic is feasible, and the program is acceptable to healthcare providers and staff. additionally, our results strongly suggest that offering an animal-assisted support program to healthcare employees may be positively impactful on workforce morale, which may in turn aid in improving the quality of care and service they provide to patients and ultimately, patients’ experience with care. notably, our results suggest that animal-assisted pro- grams could be a means to boost mood and decrease facets of burnout (specifically, patient-related burnout) among healthcare employees. this is an important find- ing, because research indicates that experiencing patient-related burnout is associated with decreased job etingen et al. bmc health services research ( ) : page of performance [ ] and turnover intention [ ] among healthcare workers. accordingly, improving this particu- lar aspect of burnout in tandem with mood may facili- tate employees to have more positive interactions with patients, which could improve a number of important outcomes including patient satisfaction and experiences with care. we did not, however, find that program participation significantly impacted work-related or personal burnout among the employees in our sample. these findings may signify that participating in an animal-assisted support program impacts facets of burnout differently. it may also, however, reflect the limited scope of our feasibility pilot, including that our work was contained to one hos- pital clinic and the resulting small sample size limited the power of our study. accordingly, we cannot be sure that the lack of significant differences in two of our burnout sub-scales was attributable to the intervention not meaningfully impacting those aspects of burnout or a lack of power to detect differences. historically, interventions designed to improve work- place burnout have focused on the individual (e.g., bol- stering individuals’ resiliency, strategies for personal behavior change) [ , ]. however, literature suggests that organizational-level strategies may be preferable to and more impactful than these individually focused methods [ ], signaling that intervention efforts should focus on programs that make the work environment less stressful and more primed toward positive employee in- teractions and experiences. while the animal-assisted support program that we describe here does not ameli- orate some organizational factors that lead to burnout (e.g., staffing, workload), other aspects make it exactly that – an organizational resource poised to improve the employee experience and optimize the organizational cli- mate of their unit. importantly, the program allows for flexible participation that can be adapted to most any employee’s schedule. given the success of the program in this study, the im- plementation process we used provides a solid foundation for future efforts to implement employee-targeted animal- assisted support programs in healthcare settings. we found several strategies particularly helpful to our imple- mentation efforts, including pre-implementation engage- ment of end-users, providing ample information about the program to employees before and during implementation, and exercising flexibility with logistics. however, it is important to note that implementation of this type of program is not one-size-fits-all. the scheduling and space protocols we describe were specifically developed to re- flect the clinic context in which we were working. each healthcare facility that embarks upon such a program should coordinate with each of its clinics to determine their preferences for scheduling and space, and to ensure that their employees can participate in program sessions. one possibility for clinics that do not have space available to dedicate for the program is to make rounds with the dog to people’s offices or hold the visits in more public spaces in the hospital, such as lobbies. our results also highlight that employee perceptions of such programs may evolve favorably over time and with exposure, highlighting the importance of offering multiple program sessions over time. in addition, it is likely that, were a program like this to be discontinued after some time, its positive impacts would wear off, further substantiating the need to offer program sessions on an ongoing basis so its desired impacts have the opportunity to be realized. one key question, which was beyond the scope of the current study, is how many times (and how regularly) individuals would need to participate in the program to reap benefit from it, as well as how long individuals need to interact with the dogs during any given session and whether there are certain activities that participants can do during these interactions that would be more impactful. future research should examine these important questions, including what the right “dose” of such a program is for it to have optimal effects and how long the benefits of participation last. in order to optimize future program implementation and facilitate larger scale roll-out, additional research is needed to assess factors that influence program imple- mentation in various healthcare clinics across facilities of varying size and complexity. future work might also explore the feasibility of implementing employee-facing animal therapy programs in facilities where these pro- grams do not currently exist for patients, as well as the factors that are associated with why the program may positively impact facets of employee wellness and (as mentioned above) what the right dose of the program is to optimize its impact. limitations the generalizability of our results may be limited as a result of recall/social desirability bias of self-report visual- analogue scale and survey data, as well as some factors related to the composition of the employees working in the clinic (i.e., female gender predominance), and that clinics may differ in baseline satisfaction and cohesiveness. in addition, we did not validate the visual analogue scale used, including its appropriateness for a healthcare worker population, and the utility of a -point scale to capture mood (e.g., as opposed to a -point scale). moreover, the way that workflow and staffing is structured in this clinic may impact generalizability of the implementation-related information to other similar settings wherein staffing is handled differently. because not everyone likes dogs, this program may not be appropriate for all employees; alter- native strategies to enhance employee wellness should be etingen et al. bmc health services research ( ) : page of considered for individuals who do not wish to interact with a dog. of note, because of the quasi-experimental de- sign used and the nature of our pre/post data, the analyses presented were descriptive and as such, we cannot draw causal inferences from them. conclusion(s) our data suggest that animal-assisted programs could be a means to boost mood and decrease facets of burnout among healthcare employees. the study further suggests that establishing such a program for employees in a busy healthcare clinic is feasible and acceptable to employees. based on these results, we believe that additional re- search to establish the effectiveness of animal-assisted support in improving healthcare employee wellness is warranted. in particular, randomized controlled trials are needed to systematically assess the impacts of this type of program on healthcare employee outcomes and identify factors that can influence their implementation. abbreviations cbi: copenhagen burnout inventory; va: us department of veterans affairs acknowledgements we would like to thank laura kostovich for creating the original illustrations for the visual analogue scale, the puppy mood scale, used to collect mood data for this study. authors’ contributions all authors listed have contributed sufficiently to be included as authors, and all those who are qualified to be authors are listed in the author byline. be, rm, bs, tph, lm, ks, bj, and fw conceptualized the study and corresponding funded grant proposal, developed all data collection instruments and processes, analyzed the data, and wrote and edited this manuscript text. di assisted with conduct of the study and conceptualization of data collection processes. all authors have read and approved the final version of this manuscript. funding all of the work completed for this study was funded by a grant from the us department of veterans affairs, office of research and development, health services research and development service (ppo – ; pi: etingen). the views expressed in this article are those of the authors and do not necessarily represent the views, position or policy of the department of veterans affairs or the united states government. availability of data and materials the datasets generated and/or analyzed during the current study are not publicly available due to institutional restrictions. ethics approval and consent to participate this study was approved by the institutional review board (irb) at the hines va hospital. the irb at the bedford va reviewed the procedures and determined that the study activities being carried out at their facility were exempt from further review. the need for consent and documentation of consent was waived (as per the hines irb). consent for publication n/a competing interests none of the authors declare a conflict of interest. author details center of innovation for complex chronic healthcare (cincch), edward hines jr. va hospital, south th avenue ( h), hines, il , usa. northwestern university feinberg school of medicine, chicago, il, usa. center for healthcare organization and implementation research (choir), edith nourse rogers memorial veterans hospital, bedford, ma, usa. department of population and data sciences, ut southwestern medical center, dallas, tx, usa. women’s mental health, mental health service line, edward hines jr. va hospital, hines, il, usa. marcella niehoff school of nursing, loyola university chicago, maywood, il, usa. pawsitive therapy troupe, chicago, il, usa. parkinson school of health sciences and public health, loyola university chicago, maywood, il, usa. received: february accepted: july references . maslach c, jackson se. the measurement of experienced burnout. j organ behav. ; ( ): – . . papathanasiou iv. work-related mental consequences: implications of burnout on mental health status among health care providers. acta inform med. ; ( ): – . . suñer-soler r, grau-martín a, font-mayolas s, gras me, bertran c, sullman mj. burnout and quality of life among spanish healthcare personnel. j psychiatr ment health nurs. ; ( ): – . . garcia ha, mcgeary ca, mcgeary dd, finley ep, peterson al. burnout in veterans health administration mental health providers in posttraumatic stress clinics. psychol serv. 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primary care employees. j ambul care manage. ; ( ): – . . garcia ha, mcgeary ca, finley ep, mcgeary dd, ketchum ns, peterson al. the influence of trauma and patient characteristics on provider burnout in va post-traumatic stress disorder specialty programmes. psychol psychother. ; ( ): – . . hall lh, johnson j, watt i, tsipa a, o’connor db. healthcare staff wellbeing, burnout, and patient safety: a systematic review. plos one. ; ( ):e . . johnson j, hall lh, berzins k, baker j, melling k, thompson c. mental healthcare staff well-being and burnout: a narrative review of trends, causes, implications, and recommendations for future interventions. int j ment health nurs. ; ( ): – . . barker rt, knisely js, barker sb, cobb rk, schubert cm. preliminary investigation of employee’s dog presence on stress and organizational perceptions. int j workplace health manag. ; ( ): – . . wells m, perrine r. critters in the cube farm: perceived psychological and organizational effects of pets in the workplace. j occup health psychol. ; ( ): – . . wilkin cl, fairlie p, ezzedeen sr. who let the dogs in? a look at pet-friendly workplaces. int j workplace health manag. ; ( ): – . . perrine rm, wells m. labradors to persians: perceptions of pets in the workplace. anthrozoös. ; ( ): – . . machová k, součková m, procházková r, vaníčková z, mezian k. canine- assisted therapy improves well-being in nurses. int j environ res public health. ; ( ):e . . hasson d, arnetz bb. validation and findings comparing vas vs. likert scales for psychosocial measurements. int electron j health educ. ; : – . . kristensen ts, borritz m, villadsen e, christensen kb. the copenhagen burnout inventory: a new tool for the assessment of burnout. work stress. ; ( ): – . . strauss a, corbin jm. basics of qualitative research: techniques and procedures for developing grounded theory. nd ed. thousand oaks: sage publications; . . lindlof r. qualitative communication research methods. thousand oaks: sage publications; . . giorgi f, mattei a, notarnicola i, petrucci c, lancia l. can sleep quality and burnout affect the job performance of shift-work nurses? a hospital cross- sectional study. j adv nurs. ; ( ): – . . crowe rp, bower jk, cash re, panchal ar, rodriguez sa, olivo-marston se. association of burnout with workforce-reducing factors among ems professionals. prehosp emerg care. ; ( ): – . . maslach c. job burnout: new directions in research and intervention. curr dir psychol sci. ; ( ): – . . panagioti m, panagopoulou e, bower p, et al. controlled interventions to reduce burnout in physicians: a systematic review and meta-analysis. jama intern med. ; ( ): – . publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. 	abstract 	background 	methods 	results 	conclusions 	background 	methods 	data and participants 	design 	participants/setting 	study design 	intervention/implementation strategies 	data collection 	pre-implementation survey 	session participation tracking and pre/post session feedback 	post-implementation survey 	semi-structured key informant interviews 	measures 	participation 	real-time mood 	burnout 	satisfaction and experiences 	semi-structured key informant interviews 	analyses 	results 	implementation processes 	participation 	facilitators and challenges for implementation 	program outcomes 	mood (table  ) 	burnout (table ) 	satisfaction and experiences 	discussion 	limitations 	conclusion(s) 	abbreviations 	acknowledgements 	authors’ contributions 	funding 	availability of data and materials 	ethics approval and consent to participate 	consent for publication 	competing interests 	author details 	references 	publisher’s note methodological and terminological issues in animal-assisted interventions: an umbrella review of systematic reviews animals review methodological and terminological issues in animal-assisted interventions: an umbrella review of systematic reviews antonio santaniello ,* , francesca dicé , roberta claudia carratú , alessia amato , alessandro fioretti and lucia francesca menna department of veterinary medicine and animal productions, federico ii university of naples, via mezzocannone, - naples, italy; alessiaamatovet@gmail.com (a.a.); alessandro.fioretti@unina.it (a.f.); luciafrancesca.menna@unina.it (l.f.m.) university centre sinapsi, federico ii university of naples, via g.c. cortese, - naples, italy; francesca.dice@unina.it (f.d.); carraturobertaclaudia@gmail.com (r.c.c.) * correspondence: antonio.santaniello @unina.it; tel.: + - received: march ; accepted: april ; published: april ���������� ������� simple summary: animal-assisted interventions (aais) include a wide range of activities aimed at improving the health and well-being of people with the help of pets. although there have been many studies on the effects of these interventions on animal and human wellbeing and health, univocal data on the methodological aspects, regarding type and duration of intervention, operators, involved animal species, and so on, are still lacking. in this regard, several systematic reviews in the scientific literature have already explored and outlined some methodological aspects of animal-assisted interventions. therefore, we developed an umbrella review (ur) which summarizes the data of a set of suitable systematic reviews (srs), in order to clarify how these interventions are carried out. from our results, it is shown that there is a widespread heterogeneity in the scientific literature concerning the study and implementation of these interventions. these results highlight the need for the development and, consequently, the diffusion of protocols (not only operational, but also research approaches) providing for a univocal use of globally recognized terminologies and facilitating comparison between the numerous experiences carried out and reported in the field. abstract: recently, animal-assisted interventions (aais), which are defined as psychological, educational, and rehabilitation support activities, have become widespread in different contexts. for many years, they have been a subject of interest in the international scientific community and are at the center of an important discussion regarding their effectiveness and the most appropriate practices for their realization. we carried out an umbrella review (ur) of systematic reviews (srs), created for the purpose of exploring the literature and aimed at deepening the terminological and methodological aspects of aais. it is created by exploring the online databases pubmed, google scholar, and cochrane library. the srs present in the high-impact indexed search engines web of sciences and scopus are selected. after screening, we selected srs that met the inclusion criteria. all papers complained of the poor quality of aais; some considered articles containing interventions that did not always correspond to the terminology they have explored and whose operating practices were not always comparable. this stresses the need for the development and consequent diffusion of not only operational protocols, but also research protocols which provide for the homogeneous use of universally recognized terminologies, thus facilitating the study, deepening, and comparison between the numerous experiences described. keywords: animal-assisted therapy; animal-assisted activity; animal-assisted education; dog; horse; methodology animals , , ; doi: . /ani www.mdpi.com/journal/animals http://www.mdpi.com/journal/animals http://www.mdpi.com https://orcid.org/ - - - http://www.mdpi.com/ - / / / ?type=check_update&version= http://dx.doi.org/ . /ani http://www.mdpi.com/journal/animals animals , , of . introduction animal-assisted interventions (aais) have been considered by the international association of human–animal interaction organizations (iahaio) [ ] as recreational, educational, or rehabilitation/therapeutic activities which, due to the presence and mediation of domestic animals, aim to act on pathological situations and on social or educational problems. they have been a subject of interest and study in health disciplines for many years [ – ], according to the criteria provided by the “one health–one medicine initiatives", promoting collaboration and communication between different disciplines to work together at local, national, and global levels, establishing an integrated approach [ – ]. more specifically, as reported by the iahaio white paper ([ ], p. ), “an animal-assisted intervention is a goal oriented and structured intervention that intentionally includes or incorporates animals in health, education and human services (e.g., social work) for the purpose of therapeutic gains in humans". these interventions incorporate human–animal teams in formal human services and, as such, these interventions should be developed and implemented using an interdisciplinary approach [ ]. aais include animal-assisted activity (aaa), animal-assisted therapy (aat), and animal-assisted education (aae). aaas are planned and goal-oriented informal interactions and visits conducted by the human–animal team for motivational, educational, and recreational purposes [ ]. aat is defined as a goal-oriented, planned, and structured therapeutic intervention directed and/or delivered by health, education, or human service professionals (e.g., psychologists) and focused on the socio-emotional functioning of the human recipient, either in a group or individual setting. the professional delivering aat (...) must have adequate knowledge about the behavior, needs, health, and indicators and regulation of stress in the animals involved [ ]. aat can act as a support to psychotherapeutic activities, understood as a collection of rules or techniques used to conduct mental health treatment, having a relevant set of goals between a professional trained person (known as a therapist) and the recipient or subject of the therapy (known as the client or patient) [ ]. in the scientific literature, moreover, it has been considered fundamental that the application of this type of intervention, aimed at the treatment of complex psychic conditions, refers to consolidated and structured theoretical reference models, which present precise indications concerning the theory of the technique to be implemented in the examination room; in order to ensure, as far as possible, the replicability of the intervention itself, its success, and the achievement of the proposed objectives [ , ]. aae is described as goal-oriented, planned, and structured interventions directed and/or delivered by educational (and related) service professionals. aae is conducted by qualified (i.e., with degree) general and special education teachers, either in a group or individual setting [ ]. they act as support for educational interventions, defined in the literature as an action through which individuals develop or perfect intellectual, social, and physical faculties and attitudes [ ]. finally, as reported by the iahaio [ ], there is also animal-assisted coaching/counseling (aac), defined as goal-oriented interventions, which are planned, structured, and directed and/or provided by authorized professionals (e.g., coaches or consultants) and assisted by animals. the coach/consultant (...) must have adequate training on the behavior, needs, health, and indicators and stress regulation of the animals involved. they provide support for consultancy activities, interventions aimed at promoting the development and use of the client’s potential, helping them to overcome any personal difficulties in which one person supports another in achieving a specific goal [ ]. as above, the various areas in which the aais apply (aats, aaas, aae) have been defined with respect to the terminology (although sometimes they often overlap) and there exists various scientific evidence of their effectiveness. given the complexity and the variety of these interventions, there is still a strong discussion with respect to the definitions (i.e., used terminology) and the corresponding applied methodologies [ , ]. in addition, on one hand, few studies have been carried out with regard to health protocols aimed at guaranteeing the safety of the setting and users/patients involved in the these interventions [ , – ] and, on the other hand, there are no exact univocal and clear regulations animals , , of regarding the applied methodologies, the most appropriate practices for their implementation, and the training of aai operators [ , ]. in the literature, it has often been strongly highlighted that the described methodologies are not always clear and that terminologies are not always univocally used [ ]. furthermore, the presence of poor references to the operating protocols used, variables of interest, effects of the srs on the scientific community, and results or limits of studies are often lamented [ ]. research designs are often described by anecdotal facts, referring to single cases with few links to theoretical frameworks [ ]. this topic also provided motivation for the drafting of numerous systematic reviews (srs) or meta-analyses [ , ]; for this reason, we consider umbrella reviews (urs) of systematic reviews (srs) [ ] to be a fast and effective way of exploring the orientation of the scientific community and getting an idea of the state-of-the-art regarding such a complex topic as this. as a study group aimed at deepening the good practices for these interventions, we have realized this paper with the intention of offering a “snapshot" of this topic to interested readers. for this purpose, we have explored the literature on the subject, consulting the srs that deepened the methodological aspects of the studies examined, with attention to the characteristics of the settings implemented and the terminology used. we believe that this work can be useful in comparing the characteristics of the many aais described in the scientific literature and, for this reason, it is aimed at all operators involved in aai research. moreover, establishing consistency among the terminology and methodological approaches of these interventions could provide further useful support to clinical studies and researchers, as well as starting a new discussion in field of aais. finally, there have been no urs with this objective, except for the work of stern and chur-hansen [ ] which aimed to explore srs related to equine-assisted interventions (eais) specifically. . materials and methods this study was carried out following aromataris and munns [ ] in the joanna briggs institute (jbi) manual, to realize an umbrella review following the “preferred reporting items for systematic reviews and meta-analyses (prisma)” guidelines [ ]. currently, urs are rapidly spreading as a fast and effective means of spreading and presenting evidence content in medical knowledge [ ]. in the literature, however, it has been clearly indicated that, in order to carry out solid scientific works, it is necessary that the operating protocols are clearly specified, the variables of interest are clearly defined, the effects of the srs on the scientific community are indicated, the results are clearly reported, that software is used appropriately, and the limits of the work done are underlined [ ]. therefore, the study procedures were defined first in an operational protocol that specified the research strategies, the inclusion and exclusion criteria, and data extraction. . . inclusion and exclusions criteria in this ur, although we also explored the possibility of a gray literature search, only srs in the english language published in international peer-reviewed and high-impact indexed journals were included, in order to ensure a higher quality of results. the subject area and research domain were indicated. furthermore, only papers published during last six years ( – ) were selected, to ensure a more recent overview of the scientific literature. in terms of content, both qualitative and quantitative srs were included, but only those containing information about the terminology explored in srs (e.g., aai, aaa, or aat), in which the terminology was considered eligible and the methodological aspects used to realize interventions were examined (e.g., frequencies and length of sessions; duration of treatment; users, animals, and operators involved). animals , , of . . search strategy our research was conducted following the three-phase search process recommended in the manual for umbrella reviews of the joanna briggs institute (jbi) [ ]. papers were collected by searching on the pubmed [ ], cochrane [ ], and google scholar [ ] search engines (jbi first step). in order to define the search query, we added (in the final strings) each of the following terminologies about the animals and the main animal species involved: dog/equine/animal. we combined these with the following terms which refer to the kind of interventions and to related methodologies: intervention/activity/therapy/education/coaching/counseling. all terms were selected based on international reference guidelines [ ]. in addition, terms relating to the involvement of dog and horses were included, considering that these species are the most involved in such interventions [ ]. in the pubmed database, we inserted the term “meta-analysis [ptyp] or systematic [sb]”, to select only srs. the same search strategy was adapted for the other databases examined, and is available from the authors upon request (jbi second step). . . study selection and data extraction the information was extracted from each sr included in the ur in order to achieve the goal. all data were entered into an excel data set. data relating to terminologies used, reference disciplines, animal species and operators involved, and variations of the settings were collected. additional data were extracted to facilitate identification of the study (i.e., first name, year of publication, journal). the search query identified articles ( in pubmed, in cochrane library, and in google scholar). after evaluating all articles for titles and abstracts, papers were selected and, after removing duplicates, only papers published in journals indexed on web of sciences [ ] and scopus [ ] were included (jbi third step). finally, a total of srs met the inclusion criteria, plus one that was found through a hand search. figure represents the prisma (preferred reporting items for systematic reviews and meta-analyses) flow-chart process [ ] of study selection. two researchers (a.s. and f.d.) examined the papers independently. moreover, the quality of the included reviews was evaluated using a score which was assigned according to the health evidence tool [ ]. each study was scored in the range from to : weak study quality if the score was four or less; medium quality, if the score ranged from – ; high quality, if it was in the range of – . the score quantified the strength of the data in the studies included in each sr and was not an inclusion criterion. the inter-judge agreement was calculated (and independently identified by two judges) as a measure of reliability, assessed by cohen’s kappa. every disagreement was solved by intervention of the senior author (a.s.). the srs included in the results are indicated by the name of the first author and the year and are listed in order of recency; the full references will be reported among those in the bibliography, indicated with an asterisk. animals , , of animals , , x of figure . prisma (preferred reporting items for systematic reviews and meta-analyses) process flowchart. . . summary of results the results highlight how most of the srs were published in journals belonging to the medical area and analyzed studies generally aimed at users with mental disorders. nevertheless, in many cases, it was difficult to detect the correspondence between the terminologies explored, those used in the studies considered eligible, and the methodological aspects described (e.g., number and length of sessions, duration of treatment). this information often appeared to be interchangeable or superimposable. furthermore, in most studies, the species involved were dogs and horses, but it was not always clear whether the operators involved were included in a specific aais training. . . description of results in this section, we explore these results in more detail. table shows the subject areas, indicated by the scopus [ ] and web of science [ ] indexed engines, to which the journals that the included srs were published in belong. figure . prisma (preferred reporting items for systematic reviews and meta-analyses) process flowchart. . search results . . process of selection and inclusion of studies the following flowchart (figure ) shows the process and the criteria for inclusion of the final results. . . summary of results the results highlight how most of the srs were published in journals belonging to the medical area and analyzed studies generally aimed at users with mental disorders. nevertheless, in many cases, it was difficult to detect the correspondence between the terminologies explored, those used in the studies considered eligible, and the methodological aspects described (e.g., number and length of sessions, duration of treatment). this information often appeared to be interchangeable or superimposable. furthermore, in most studies, the species involved were dogs and horses, but it was not always clear whether the operators involved were included in a specific aais training. . . description of results in this section, we explore these results in more detail. table shows the subject areas, indicated by the scopus [ ] and web of science [ ] indexed engines, to which the journals that the included srs were published in belong. animals , , of table . indicated disciplinary areas in systematic reviews (srs) included. references journal scopus web of science subject area research domain . hawkins, journal of psychiatric research medicine psychiatry . jones, plos one medicine science and technology . klimova, bmc psychiatry medicine psychiatry . mandrá, codas medicine not indicated. . charry-sánchez, complementary therapies in clinical practice. medicine integrative and complementary medicine . shen, complementary therapies in medicine medicine integrative and complementary medicine . yakimicki, clinical nursing research nursing nursing . brelsford, environmental research and public health medicine environmental sciences and ecology . hoagwood, applied developmental science psychology psychology . bert, european journal of integrative medicine medicine integrative and complementary medicine . maber-aleksandrowicz, research in developmental disabilities psychology rehabilitation . mapes and rosen, review journal of autism and developmental disorders medicine psychology . maujean, anthrozoos veterinary veterinary sciences . o’haire, frontiers in psychology psychology psychology . kamioka, complementary therapies in clinical practice. medicine integrative and complementary medicine it is clear that all of the srs were published in journals relating to scientific disciplinary areas related to the health sector and most (about %) of them [ – ] belonged to the medical and health sector, while the rest % [ – ] fell under other disciplines (i.e., psychology, veterinary medicine, nursing, and occupational therapy). in table , on the other hand, the users to whom the aais examined in the srs were (mainly) addressed are indicated. animals , , of table . involved patients or users in animal-assisted interventions (aais), according to each sr. references most common users most common diagnosis . hawkins, schizophrenia and related disorders * schizophrenia. . jones, adolescents with mental health disorders* physical or sexual abuse, low achievement in school, interpersonal difficulties, emotional issues, severe psychiatric illness. . klimova, people with dementia * alzheimer’s disease. . mandrá, people with autistic spectrum disorder and dementia autistic spectrum disorder, cerebral palsy, communication disorders. . charry-sánchez, adults with psychiatric diagnosis depression, dementia, multiple sclerosis, ptsd, stroke, spinal cord injury, schizophrenia . shen, children and adolescents various mental health disorders. . yakimicki, people with dementia * dementia of varying stages. . brelsford, children in educational contexts * various emotional conditions. . hoagwood, children and adolescents with health mental problems *. emotional/behavioral problems, users at risk, autism spectrum disorder, attention deficit hyperactivity disorder, trauma, ptsd. . bert, children, psychiatric and elderly patients psychiatric diagnosis . maber-aleksandrowicz, people with intellectual disability mental retardation. . mapes and rosen, children with autistic spectrum disorder*. autistic spectrum disorder . maujean, children with autistic spectrum disorder and adults with schizophrenia autistic spectrum disorder, schizophrenia. . o’haire, children and adolescents focused on family violence post-traumatic stress disorder. . kamioka, people with mental and behavioural disorders schizophrenia, cancer, advanced heart failure, depression, ambulatory motor impairment, and older adults admitted to skilled rehabilitation units, elderly persons with chronic psychiatric, medical, and neurologic conditions. the srs indicated with an asterisk (*) were intended to explore only aais that exactly involved the type of user indicated. the included srs highlighted that most of the studies were aimed at patients with psychiatric conditions [ – , – , , , ], while the others were aimed to patients with deterioration or cognitive delay [ , , ]; in all cases, these were patients who needed or were involved in rehabilitation treatments. in table , the considerations of the methodological aspects relating to the studies examined in the srs are indicated. animals , , of table . indicated terminologies and methodologies. references terminology indicated settings (if specified) explored considered eligible . hawkins, aat aat; aaa; pt ; eap ; cap; novel intervention assisted by therapy dog treatment durations: – weeks (therapies); – weeks (activities; others). frequency of sessions: – per week (therapies); – per week (activities; others). length of sessions: min to hours (therapies); – min (activities; others) . jones, cap aat; aai; counselling treatment durations: weeks (therapies; interventions). frequency of sessions: per week (therapies; others). length of sessions: – min (therapies); min (interventions; others). . klimova, dog therapy aat aai; aat; aaa; study with a therapy dog treatment durations: – weeks (therapies); weeks (activities; interventions). frequency of sessions: – per week (therapies); per week (activities; interventions). length of sessions: – min (therapies); min (activities; interventions). . mandrá, aat pt; aai; aat; thr ; aaa; eaa ; cat ; elephant-assisted therapy; hippotherapy; canine therapy program; dog therapy not indicated. . charry-sánchez, aat aai; aat; aaa; dai ; eat; thr pet-assisted living intervention; hippotherapy treatment durations: – weeks (therapies); – weeks (interventions); – weeks (activities; others). frequency of sessions: per week to every weeks (therapies); – per week (interventions); per week (activities); per week (others). length of sessions: – min (therapies); – min (interventions); – min (activities); min (others). . shen, . aai aai; pt; canine visitation therapy; pet visitation program treatment durations: – weeks (therapies); – weeks (activities); – weeks (interventions). length of sessions: – min (therapies); min patient-driven (activities); min patient-driven (interventions). animals , , of table . cont. references terminology indicated settings (if specified) explored considered eligible . yakimicki, aai aat; aaa; pt; dat ; pet-assisted living intervention treatment durations: days to year (therapies); – weeks (interventions); weeks to years (activities); weeks (others). frequency of sessions: – per week (therapies; interventions); per week to every two weeks (activities); per week (others). length of sessions: – min (therapies); – min (interventions); – min (activities); – min (others). . brelsford, aai aaa; dog visitation program; therapy dog; human animal team approach; animal-assisted reading program; rabbit-assisted intervention; animal-assisted literacy instruction; human–animal intervention team model treatment durations: weeks to year school (therapies); – weeks (interventions); weeks (activities); weeks to year school (others). frequency of sessions: per week (therapies); – per week (interventions); everyday (activities); per week (others). length of sessions: – (therapies); – min (interventions); – min (others). . hoagwood, aat aai; aat; aaa; therapeutic horseback riding; pet visitation; equine facilitated learning prevention program treatment durations: – weeks (therapies); weeks (interventions); – weeks (activities); – weeks (others). frequencies of sessions: – per week (therapies); per week (activities; others) length of sessions: – min (therapies); – min (interventions); min (activities). . bert, aaa aat aai; aat; aaa; pt; dai; eap; cap; canine-assisted ambulation; pet visitation; therapy dog treatment durations: weeks to months (therapies); weeks to months (activities). frequency of sessions: – per week (therapies); per week to per month (activities). length of sessions: min to day (therapies); – min (activities); – min (interventions); – min (others) . maber-aleksandrowicz, aat aat; eat; thr; equestrian therapy; onotherapy; kynotherapy; therapeutic animal; pet-facilitated therapy treatment durations: weeks to months (therapies). frequency of sessions: – per week (therapies). length of sessions: – min (therapies). . mapes and rosen, eat thr; eat; eaa; hippotherapy number of sessions: – (therapies) (not further specified). . maujean, . aat aat; thr; aai treatment durations: – weeks (therapies); – weeks (interventions). frequency of sessions: – per week (therapies); – per week (interventions). length of sessions: – min (therapies); – min (interventions). animals , , of table . cont. references terminology indicated settings (if specified) explored considered eligible . o’haire, . aai aat; cat; dat; equine facilitated (psycho)therapy; natural horsemanship; psychiatric service dog treatment durations: – weeks (therapies); week to year (others). length of sessions: – min (therapies); – min (others). . kamioka, aat aat; aaa; aai; pt; dat; animal facilitated therapy; service dogs; avian companionship treatment durations: – weeks (therapies); – weeks (activities); days to weeks (interventions); days to weeks (others). frequency of sessions: daily to twice per week (therapies); – per week (activities); daily to twice per week (interventions). length of sessions: – min (therapies); – min (activities); – min (interventions). aat = animal-assisted therapy; cap = canine-assisted psychotherapy; aai = animal-assisted intervention; aaa = animal-assisted activity; eat = equine-assisted therapy; pt = pet therapy; eap = equine-assisted psychotherapy; thr = therapeutic horseback riding; eaa = equine-assisted activity; cat = canine-assisted therapy; dai = dog-assisted intervention; dat = dog-assisted therapy. animals , , of it should be noted that, in many cases, although the research object of the srs was a specific method of intervention, studies presenting other types were also considered eligible: for example, some srs aimed at exploring the aats had also included works relating to aaas or, generically, aais [ – , – ]. the result, therefore, has an important variability in the settings described (where indicated), whose comparison appears very complex; in fact, the duration of the treatments indicated as “aats” ranged from four consecutive days [ ] to months [ ]; that of the “aaas” from three weeks to two years [ ]; that of the “aais” from to weeks [ ]; and that of the other modalities from ten days [ ] to a year [ ]. the frequency indicated in the “aats” ranged from daily [ ] to once every two weeks [ ]; in the “aaas” from three sessions a week to one every two weeks [ ]; in “aais" ranged from daily [ ] to one session per week [ ]; and, in the other modalities, once or twice a week [ ]. finally, the duration of the individual sessions, in the modalities indicated as “aats”, varied from min to one whole day [ ]; in the “aaas”, from [ ] to min [ ]; in the “aais", from [ ] to min [ ]; and, in the other modes, from the three [ ] to min [ ]. table . shows the animal species and the operators involved, as indicated by the srs. table . involved interventionists/operators and animals. references interventionists/operators involved animals . hawkins, not specified dogs, horses, farm animals, and hamsters . jones, facilitators (students, counsellors, psychologists, animal handlers), in some cases with specific training dogs * . klimova, not specified dogs * . mandrá, . physicians, psychologists, physiotherapists, occupational therapists, pedagogists, nurses, speech therapists, educators dogs, horses, fishes, guinea pigs, elephants, and insects . charry-sánchez, therapists (not further specified) dogs, horses, farm animals, and cats . shen, . not specified dogs and horses . yakimicki, deliverers (animal trainers, certified therapy dog trainers, geriatric nurse practitioner, veterinarians, extended-care facilities staff and therapy dog volunteers, research staff and volunteers, dog therapy guides, staff nurses, centre staff, certified dog handlers, recreational therapy staff, recreation therapy staff and animal therapists, veterinarians, and psychiatric nurses) dogs, fish, and cats . brelsford, dog handlers dogs and guinea pigs . hoagwood, trained animal handlers dogs, horses, cats, rabbits, other farm animals, and guinea pigs . bert, animal handlers (not further specified). dogs, cats, fishes, rabbits, reptiles, and other rodents . maber-aleksandrowicz, psychologists, equine instructors, dog-therapists, teachers, occupational therapists, therapy dog handlers, therapists, or volunteers dogs, horses, donkeys, and guinea pigs . mapes and rosen, not specified horses * . maujean, . not specified dogs, horses, and farm animals . o’haire, . social workers, riding instructors, dog handlers, psychologists, veterinarians, volunteers, therapists, or researchers dogs, horses, cats, and farm animals . kamioka, animal handlers, psychologists, or not further specified dogs, cats, dolphins, birds, cows, rabbits, ferrets, and guinea pigs the srs indicated with an asterisk (*) were specifically aimed at exploring only aais involving the indicated species. the professional figures involved seem to be manifold. the most suitable were dog/animal handlers [ , , , , – ] and psychologists [ , , , , ]. in any case, they were not always described as having specific training in this regard, nor were the criteria by which they were chosen animals , , of for the management of the interventions clear. as for the animals, however, dog was the main species involved (in all srs, except for the one prepared by mapes and rosen [ ]), followed by horse [ , , , , , – ]. . . quality assessment of the studies regarding the quality of the included studies (table ), based on the above-mentioned criteria, all chosen reviews had comprehensively good quality, as none of them had a quality score of less than (moderate quality). reliability as assessed by cohen’s kappa was . , indicating strong agreement between the judges. animals , , of table . general description and evaluation of included reviews’ characteristics. references conclusions limits h.e. score . hawkins, based on the included studies, it is not possible to confirm whether aat is or is not effective in treating schizophrenia as rigorous, large-scale randomized controlled trials with long-term follow-up are needed. included studies were heterogeneous, of lower quality, and only in the english language. moreover, the included studies were limited to equine-assisted interventions, peer-reviewed papers, and included participants very wide age range ( – years). . jones, cap may improve the efficacy of mental health treatments in self-selected adolescent populations by reductions in primary symptomatology (i.e., ptsd , internalizing symptoms, and the severity of serious psychiatric disorders). this non-pharmacological therapy (cap) may also confer further benefits through secondary factors that improve therapeutic processes and quality of life (e.g., socialization). a clear nomenclature to describe the interactions between dogs, facilitators, and participants were proposed. this work presented a heterogeneous and small number of studies. only four of the studies achieved “fair” or “good” methodological quality plus a moderate to high level of evidence. . klimova, the findings showed that aat may represent a beneficial and effective complementary treatment (particularly in the area of psychological and behavioral symptoms) for patients with different levels of dementia severity. the included studies showed different methodological approaches to aat or aaa, with small subject samples as well as different intervention periods. only one study measured the effect after the follow-up period. . mandrá, a great diversity in the aat practice was showed; in fact, performed by different professionals in the areas of health and education (mostly in the medical field), but few programs applied an interdisciplinary approach. several animal species were involved as mediators of the therapeutic intervention, mainly dogs and horses, specifically for asd . although the used programs showed positive effects in different genders and age groups of patients/users, the included studies were very heterogenous and carried out in several settings, and were different regarding the number of participants, gender, age groups, and diagnosis. . charry-sánchez, despite the lack of research published in scientific journals regarding aat for ptsd, the results suggest a potential benefit in this field. in particular, there is strong evidence supporting the use of eat for motor outcomes and quality of life in patients with ms , as well as in patients with stroke and spinal cord lesions. in this review, only articles in european languages were considered. overall quality of the articles was low. they showed a high variability regarding methodological instruments and a lack of detailed information regarding specific techniques. . shen, the findings of current study suggest that “bodily contact” is one of the most important features contributing to the effectiveness of aai , even across a variety of settings, as people may subjectively choose some variables compared with others (i.e., physical interaction vs. appearance). only seven articles in english language were included, although all had minor methodological limitations and all review findings had good quality. animals , , of table . cont. references conclusions limits h.e. score . yakimicki, the majority of included studies in this review, have shown that animal-assisted interventions (aais) are effective in reducing the behavioral and psychological symptoms of dementia (bpsd). this study has identified several areas for continued research and refinement of these interventions. concluding that aais can represent a non-pharmacological therapy for the reduction of bpsd. the included articles showed a wide array of measured symptoms, representing a limiting factor in this systematic review. comparison between studies was difficult. as the study designs and statistical methods used varied widely. moreover, all studies involved a small number of participants and there was a relatively small number of rcts . . brelsford, the majority of the included studies reported beneficial effects on cognitive and socio-emotional behavior and physiological responses in the school setting. large variation in design of the included studies and several identified external factors that may have influenced the results. sample sizes are often small, containing mixed ages or mixed abilities. many studies did not include an adequate control group in the experimental design. . hoagwood, aat for children with (or at risk of) developing mental disorders represents a complementary and integrative therapeutic approach with limited but growing scientific support. few studies suggest that, for types of problem areas such as autism and trauma, a structured therapeutic intervention with horses or dogs may determine improved functioning. none of the included studies addressed the mechanisms of the therapeutic process. few studies reviewed integrated theories with specific program elements or with precise measurements of outcomes. in addition, few studies specifically included a manual and, in their absence, these interventions cannot be replicated. . bert, aat or aaa for hospitalized patients seem be useful and safe for a wide range of diseases, although many aspects regarding the type of intervention, safety, economic issues, and patients that would greatly benefit these programs remained unclear. heterogeneity and low quality of the retrieved studies, and only few works were rcts. most of the included papers presented limited samples. some studies lacked a control group, while others were pilot studies. only few studies described the sanitary protocols adopted for the animals involved in detail. finally, some papers lacked details of randomization or considered only parent or patient opinions. . maber-aleksandrowicz, the evidence provided in this paper highlights that aat may be a potentially useful supportive intervention in improving quality of life in persons with intellectual disability, although good quality research is yet lacking. this review included aat studies having a targeted population exclusively to id , to excluding studies with mixed populations. moreover, only peer-reviewed published journal articles were included (i.e., excluding gray literature). . mapes and rosen, this review paper represents a starting point for future research, in order to determine the validity and reliability of eat for children with asd. in fact, this work could be useful for researchers in order to identify the most effective research designs and settings in this field. in the research studies on eat, small sample sizes were included due to cost, the associated challenges of data collection in real-life situations, and the use of live animals in research (i.e., concordance with ethical guidelines for animal use). in addition, the included studies showed a lack of randomization or control groups, low capability of replication, and low standardization. . maujean, aais may be of benefit to a wide range of individuals, including children with asd and adults with psychological disorders; particularly in schizophrenia. the included studies were performed using relatively small sample sizes ( – patients). in fact, all except one showed a statistical power analysis that confirmed a sample size not useful for detecting an effect. animals , , of table . cont. references conclusions limits h.e. score . o’haire, as reported by authors, aai shows promise as a complementary technique, but it is necessary to carry out further research to better understand the different aspects of its beneficial effects in primary treatment for trauma. assessments in the included review studies were predominantly self-reported. published and unpublished work were included. in both categories, positive outcomes were reported; although, the effects in published studies were greater than those in unpublished studies. another potential bias was researcher “expectancy bias” as, in some studies, the researcher designed and performed the study in addition to presenting the intervention. . kamioka, aat may represent an effective treatment for several illness conditions, such as mental and behavioral disorders, such as depression, schizophrenia, and alcohol/drug addictions, based on a holistic approach of interaction with animals in nature. only studies with english and japanese key words were searched and included. a relatively small and heterogeneous sample of studies was included. the standard procedures for estimating the effects of moderating variables were not followed. aat = animal-assisted therapy; cap = canine-assisted psychotherapy; ptsd = post traumatic stress disorder; asd = autism spectrum disorder(s); eat = equine-assisted therapy; ms = multiple sclerosis; aai = animal-assisted intervention; rcts = randomized controlled trials; aaa = animal-assisted activity; id = intellectual disability. animals , , of . discussions from the analysis of the included papers, it is possible to deduce that aais are widely recognized in the literature, as they are widespread in the medical sector and particularly useful in the rehabilitation field [ – , , ]. despite this, in the srs considered, it can be highlighted that these descriptions do not always correspond to the implementation of suitably corresponding operating practices; or, at least, to the use of univocal procedures, standardized and recorded in theoretical models recognized as indispensable for health interventions [ – , ]. the authors have highlighted the widespread lack of structured research designs, definitive objectives, criteria for choosing the animals involved and the operators involved, and health protocols aimed at ensuring the safety of the participants involved [ – , ]. the srs seemed to agree on two additional aspects: firstly, the frequent involvement of dogs and horses [ , , ], even the ways in which their presence can facilitate the trend of the activities. these preferences could be related, for dogs, to a long history of co-evolution with humans [ , ] and, for horses, to a greater predisposition by the patients involved [ ]. another aspect of concordance between the srs is the urgent need to structure and implement aais characterized by specific qualitative and quantitative studies that highlight the methodological rigor and the effects of the interventions described; all, in fact, highlighted the vast heterogeneity of the analyzed works as being a limit and puts them at risk of not being useful as a resource for the scientific community. this concern is highly acceptable. for example, we highlight the case of interventions indicated as therapies/psychotherapies, for which, as processes for the treatment of complex clinical conditions, the importance of theoretical and methodological rigor has been widely underlined [ , ]. in fact, theoretical constructs or models are rarely indicated or, if there is a diversity of approach, it is with reference to the different clinical conditions of the patients indicated. furthermore, in the srs, their descriptions (where present) often appeared superimposable to those of interventions indicated as another type; in terms of number of meetings, their frequency, set objectives, and training of the operators involved. for example, therapies/psychotherapies have also been considered as interventions carried out by operators whose training is not always specified or whose duration is very short, whereas it is considered essential that they are carried out by adequately trained personnel [ , , ] and who take time to establish a therapeutic relationship that can promote the treatment of the clinical condition involved [ ]. however, it must also be said that, in some cases, although the srs strongly emphasized how this confusion is limiting for the study of aai, the results of many were equally heterogeneous. in several srs, in fact, a frequent incongruity between the terminologies explored by the researchers (among the most frequent: aais and aats) and the papers considered eligible was evident, describing interventions in which the terms used were often juxtaposed and whose practices did not always appear to be comparable, being very varied both in terms of organization of the setting (i.e., the frequency of the sessions varies from daily to monthly, the duration of the sessions from a few minutes to many hours) and the involvement of professional figures [ – , ]. furthermore, this aspect is to be considered as an important limit for the exploration of these interventions, as it makes the deepening of the scientific literature and the study of the specific aai protocols complex, creating further difficulties in the analysis of their characteristics, their replicability and, most importantly, the effects of the techniques used on the clinical conditions treated [ , , ]. limits of our study this study has several limitations. first, the heterogeneity of the data collected did not allow for a meta-analysis. in fact, many srs presented only qualitative data or did not present important information that would allow us to carry out statistical comparisons between the various studies described (e.g., divide studies according to the ages of the users). however, another limitation is that we did not include meta-analyses among our results: this corresponded to an important lack of quantitative data, which did not allow us to conduct all of the analyses proposed by the jbi guidelines animals , , of (e.g., estimating a common effect size or performing a stratification of evidence) [ ]. on one hand, these limitations can be considered an important index of the heterogeneity that characterizes the literature on aais and, on the other hand, they can provide a stimulating starting point for the realization of new research. . conclusions the results of this ur highlight that, within the high-impact scientific literature, bibliographic research on aais consider them as interventions belonging to the health area, which are particularly aimed at the rehabilitation field. however, despite their wide diffusion, the effects of such interventions on the clinical conditions examined do not seem to be univocally defined, as well as their functioning in the clinical and therapeutic setting. aais are mainly dealt with in the health sector (i.e., aat), concerning the treatment of mental disorders with the particular involvement of dogs and horses, and with operators at different levels of training (although specific training for aais is not always indicated). nevertheless, in this field of study, there is not always a univocal use of the terminologies used to indicate the different types of interventions carried out, despite the indications recognized at an international level [ ]. at the methodological level, in particular relating to the structuring of the described settings (i.e., number and length of sessions, duration of treatment), the characteristics described in the various studies appear superimposable and there was no unequivocal correspondence with the typology of intervention indicated. these results are in agreement with the literature on the subject, in which there have been complaints of how, in aat and aaa in the healthcare facilities, it is desirable that the animal (particularly for dogs) could be handled by a trained professional in an interspecific relationship and according to interdisciplinary principles, who is able to take charge of the animal’s health and evaluate the zoonotic risk in real-time (e.g., a veterinarian) [ , ]. this information is indicative of the widespread heterogeneity present in the literature concerning the study and implementation of aais. therefore, there is a need for the development, and consequent diffusion, of protocols (not only operational, but also for study and research), which provide for a univocal use of globally recognized terminologies which facilitate comparison between the numerous experiences carried out and reported in the field. author contributions: conceptualization, a.s. and l.f.m.; data curation, f.d., r.c.c., a.a., and a.s.; investigation, a.s. and f.d.; methodology, f.d., r.c.c., and a.s.; writing—original draft preparation, a.s., f.d. and a.a.; writing—review and editing, a.s., a.f. and l.f.m.; supervision, l.f.m. all authors have read and agreed to the published version of the manuscript. funding: this research received no external funding. conflicts of interest: the authors declare no conflict of interest. references . international association of human animal interaction organizations (iahaio) iahaio white paper , updated for . the iahaio definitions for animal assisted intervention and guidelines for wellness of animals involved in aai. . available online: http://iahaio.org/wp/wpcontent/uploads/ / /iahaio_ wp_updated- -final.pdf (accessed on march ). . menna, l.f. the scientific approach to pet. therapy. the method and training according to the federician model; university of naples 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[crossref] . mantovani, a. human and veterinary medicine: the priority for public health synergies. vet. ital. , , – . © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . /j.applanim. . . http://dx.doi.org/ . /ani http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	materials and methods 	inclusion and exclusions criteria 	search strategy 	study selection and data extraction 	search results 	process of selection and inclusion of studies 	summary of results 	description of results 	quality assessment of the studies 	discussions 	conclusions 	references editorial who needs the diabetes specialist physician? e. a. m. gale published online: february # springer-verlag the umbilicus serves no useful purpose other than to remind us where we came from. the sleeve of a man’s jacket still carries the buttons once placed there to discourage the owner from wiping his nose. the diabetes specialist physician is seen by some health service planners in much the same light. when diabetes was rare, the specialist was badly needed. he was seen as a valued repository of unshared knowledge and took personal responsibility for a high proportion of those affected. his expertise went unchallenged, and other health professionals would seek his advice when treating a patient on insulin. the old-school diabetologist was a general phys- ician who would, as i once did, think nothing of passing a sigmoidoscope or injecting a joint in the diabetic clinic. but times have changed, and those days are just a memory. the most obvious change has been the increasing preva- lence of diabetes. in the uk, for example, we have roughly one diabetes specialist physician for every , people, about % of whom will be expected to develop diabetes in the course of a normal lifespan. since only a small minority of those affected will ever be able to consult a specialist, primary care has expanded to meet the need. general practitioners no longer fear diabetes, and (at least in the uk) are well remunerated for ticking all the treatment boxes in their patient registers. the physician, meanwhile, now works in a team and sees many of his former tasks performed, rather more effectively, by others. diabetes networks have evolved, treatment pathways have been automated, and patient care has become more streamlined, more evidence-based and more devolved. the emphasis has swung from problem manage- ment to prevention, and from the individual to the population. all this, as people tend to forget, arose on the foundation laid by generations of diabetes physicians—but have they ren- dered themselves obsolete in the process? the diabetes physician has never enjoyed high standing within the hierarchy of medical specialities, for specialists still derive their status from the organ they serve. a trad- ition stretching back to the middle ages has decreed that the noble organs are situated above the diaphragm, and the greatest public respect (and private fees) are reserved for those who pronounce upon them. the sub-diaphragmatic specialities, diabetes included, are assigned to a lower caste, in keeping with the digestive and excretory functions with which they deal. nor, in the current climate, is it easy for a diabetologist to justify his (or her) existence. anyone can diagnose diabetes, and there are no expensive and invasive procedures that only the specialist can perform. diabetes can be managed with negligent ease by those inclined to do so. the expertise of the physician may be wide-ranging, but he typically knows less about the workings of glucose meters and infusion pumps than his specialist nurse, less about diet than his dietitian, less about feet than the podiatrist, less about eyes, hearts, nerves, kidneys and flaccid penises than his colleagues in the corresponding specialities, and (in one or two instances known to the author) less about people than the clinic receptionist. nearly a century ago, a frustrated physician bemoaned the fact that a raised blood glucose level produces no pain. life would be so much easier if it did, for affected individuals would beat a path to your door. those who consult a venereologist have a burning desire to be there, but the diabetologia ( ) : – doi . /s - - - e. a. m. gale diabetes and metabolism, division of medicine, university of bristol, bristol, uk e. a. m. gale (*) diabetes and metabolism, medical school unit, southmead hospital, bristol bs nb, uk e-mail: edwin.gale@bristol.ac.uk diabetologist sees people who generally feel well. ever ready to offer reassurance, he must first induce the anxiety that the reassurance is intended to relieve. he does this by informing people of problems they haven’t got, before suggesting that they will be able to reduce the theoretical possibility of something that might not occur by abstaining from many of the simple comforts of life. should the worst indeed happen, the diabetologist is unable to help, for his patient now needs a cardiologist, a nephrologist or an ophthalmologist. these specialities once looked to him for support, but so much of their work now relates to diabetes that they have become increasingly expert in its management. nor will they fail to rebuke him for the fact that his patient is not in better control of his diabetes, which (to rub salt in the wounds) now improves dramatically once the patient has something to be really scared about. faced with this gloomy catalogue, it might be easy to conclude that the diabetologist fits the surgical definition of a physician as someone who knows everything but can do nothing. but there is worse to come, for he no longer knows everything. his opinions have come under the spotlight, for the health service apparatchik, one of an emerging breed, wishes to ensure that people with diabetes get the best available advice wherever they seek it. simple enough, as the apparatchik will argue. you assemble the evidence, analyse it according to an agreed protocol, feed the analysis to a committee of statisticians and epidemiologists, and generate therapeutic guidelines. but, as he learns to his dismay, this is not enough, for rogue physicians persist in offering expensive and seemingly inappropriate remedies of their own. these physicians must therefore be motivated, bribed or otherwise encouraged to comply—for example, by changing the formulary. come to think of it, the apparatchik now realises, a paramedic with a computer would be much less trouble. problem solved? not yet, alas, for patients, as he goes on to discover, are disinclined to forego their humble pleasures, are careless about taking their tablets and wantonly disregard his perception of their own best interests. enter the educators, the psychologists, and all the other promoters of health. some people will respond to this—for health promotion campaigns, like drugs for diabetes, work best when new—but many will not. ah well, sighs the apparatchik, we did our best. and for those we failed to reach? well, they can always go to their doctor. there is, as the perceptive reader will appreciate, an element of satire in the above, but possibly not enough for comfort. the impact of the changing demography of diabetes will vary from one health system to another, and those who fear that humanity will soon be reduced to a homogenous admass should be encouraged by the extraordinary variation between national cultures when it comes to patient expect- ations and the delivery of diabetes care. the traditional brass plate still flourishes in some systems, and the physician who operates behind it will be content to see only those who want to see him, with no commitment to the rest. he will thrive in inverse proportion to the quality of primary care and in direct proportion to the magnitude of his fees. people value what is highly priced, a source of constant chagrin to those of us who work in the public sector, and typified for me by the patient who began the consultation by complaining of the cost of the bus ticket to the hospital. ‘look at it this way,’ i suggested, ‘in return for your bus fare you get to see a well-known diabetes specialist entirely free of charge.’ the patient cheered up immediately. ‘that’s good,’ he said, ‘when do i get to see him?’ even those whose amour propre is not at risk now experience increasing tension between reimbursement sys- tems that seek to impose cost-effectiveness and conformity and their own personal sense of a physician’s role. the challenge is more clearly defined within more highly evolved and integrated (or, as some would say, socialised) health systems, such as that of the uk, but rising patient numbers and health costs spell change for all of us, everywhere. how have physicians responded to this changing environ- ment? some specialists are blessed with well-funded services that cater to selected patients who are eager to attend. they will no doubt continue to tell us how easy it is to manage diabetes, provided we adopt their own particular pet therapy. super-specialism is an option, but only works well if the system can identify the right people to refer. some colleagues have gone out of the clinic to become standard bearers for diabetes care in their own community, often with remarkable success. they face two problems. the first is health service entropy, a law that dictates that anything that works well will either be reorganised or allowed to run downhill. the second problem is one of ownership, for the person who raises a standard soon discovers that so many other hands have reached out to grasp it that he or she is unable to move at all. others again disappear into an administrator’s office, emerg- ing from time to time to tell the rest how their job should be done. research is an attractive alternative, but part-timers find it hard to be competitive in the laboratory, and patient-based research is now so large-scale as to offer diminishing scope for personal initiative. a few brave souls venture into the alternative reality of qualitative research, but those who succeed in learning the language are rarely able to commu- nicate the insights they have gained. last but not least are the evidence-based evangelists, perpetually at odds with the big pharma groupies who proliferate at the other end of the ideological spectrum. the possibilities are endless, and if all else fails the golf course beckons. but where, amid so much displacement activity, do we discover the role of the diabetes specialist physician? a diabetes physician has no unique skills. he cannot aspire to be a super-technician like the interventional cardi- ologist, or to become so clever that no-one else can under- stand him, like the neurologist or pure endocrinologist. he diabetologia ( ) : – does not diagnose, requires few investigations, has few treatment options that only he can provide, and he cures no- one. his one core role, which has never really changed, is to sit down with fellow human beings and help them to organise diabetes around their life, rather than life around the diabetes. to this encounter he brings considerable inherited and personal experience, acquired at the interface between affected people, their circumstances, and the vast body of lore and information that is available to help them. this, he firmly believes, can make a difference: so much so that he is likely to consider it one of the more rewarding aspects of his existence. he believes that some of the people he meets will emerge from the meeting feeling less isolated, with more pride, motivation and confidence, ready once again to take back control of their own lives. all very well, as the outsider will observe, very uplifting, but how do you measure it? and here we come to the heart of the problem. in the human race experienced a collective twinge of anxiety when a computer called deep blue defeated the reigning chess champion, garry kasparov, two games to one, three draws. the diabetes equivalent of this contest has yet to take place, but the outcome cannot be in doubt. there are only squares on a chess board, and deep blue’s circuits are not yet ready to take on mrs gladys smith in the diabetes clinic. and what logical device, however massive, could fail to experience the electronic equivalent of a nervous breakdown when required to come up with a rational therapy for type diabetes? humans can skip across gaps in logic or knowledge by ascertaining what most of those sitting around a table would like to believe, a method known as consensus. no computer could hope to compete with this. you can, when all is said and done (and more is generally said than done), direct treatment to individuals or to popu- lations. populations are easy, for diabetes management can indeed be reduced to a set of general rules. these rules will on aggregate perform more efficiently than even the best- informed of clinicians, and the simplest of computers can be taught to apply them. this time, the computer wins. and when the right systems are in place and the right advice has been given, all should now be well in the best of all possible worlds. but is it? yes, because you have identified and treated people earlier, and thereby bought them a little time, which is all that medicine can ever do. no, because the condition still runs its inevitable course, and the great majority of people with diabetes are still in unsatisfactory control. and here we make our biggest mistake, concluding that what we need is better and more effective therapies for diabetes. we already have effective therapies. what we lack, and thank goodness for it, are better and more effective patients. if you do not believe me, consider the computer game known as the sims. this game, which appeals to control freaks and adolescent girls, allows the player complete control over a community of totally compliant individuals. these eat, exercise and excrete in total conform- ity to the wishes of their controller. who could doubt that % of people with diabetes would achieve their glucose targets within such a setting? i rest my case. the diabetes physician, to conclude on a philosophical note, would not be needed in a world which lacked two things: free will and contingency. contingency, in non- technical terms, means the muddle of everyday life, the muddle that keeps you and your patients so occupied that you and they have no time or energy to spare for the prevention of other future messy situations. and now i must try to avoid two such messy situations myself. first, i am sorry that i have consistently referred to the physician as ‘he’. don’t blame me, blame the english language, which lacks an androgynous personal pronoun. please understand that ‘he’ embraces ‘she’ at all points in this discussion, except perhaps with reference to golf. next, a word for the diabetes therapist who is not a physician. i will not apologise to you, for this is all your fault. it is your energy, skill and understanding of other people that has threatened to make me redundant. you taught me my limits, told me things about my patients that i would never have guessed, and the team approach you introduced has been the greatest advance in diabetes care in my generation. you have tolerated me for so long that you will now, i hope, forgive my focus on the most vulnerable member of your team, which is myself. people like me, as i am forced to conclude, have nothing to offer other than experience and expertise; and expertise, being unmeasurable, will always be undervalued. it ranks with health and happiness as something never fully appreciated until absent, as when you witness the damage that lack of expertise can inflict upon other people’s lives. physicians, and all those who treat diabetes by talking to people about it, see individuals. individuals don’t have outcomes. an individual is an outcome. if you can understand this, you are in the right speciality, and doing the right job. diabetologia ( ) : – 	who needs the diabetes specialist physician? << /ascii encodepages false /allowtransparency false /autopositionepsfiles true /autorotatepages /none /binding /left /calgrayprofile (none) /calrgbprofile (srgb iec - . ) /calcmykprofile (iso coated) /srgbprofile (srgb iec - . ) /cannotembedfontpolicy /error /compatibilitylevel . /compressobjects /off /compresspages true /convertimagestoindexed true /passthroughjpegimages true /createjdffile false /createjobticket false /defaultrenderingintent /perceptual /detectblends true /colorconversionstrategy /srgb /dothumbnails true /embedallfonts true /embedjoboptions true /dscreportinglevel /emitdscwarnings false /endpage - /imagememory /lockdistillerparams true /maxsubsetpct /optimize true /opm /parsedsccomments true /parsedsccommentsfordocinfo 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f c c e d f c f c e e e f e c e e d e e d d > /deu <feff a f f f e f f c c e d f c f c e e e f e c e e d e d c d e d d d d c f e e f e c f a f f f f e e e d d e f d d f e c f e c e f f c f f f f e c e f f c e f c f a f d f e e> >> >> setdistillerparams << /hwresolution [ ] /pagesize [ . . ] >> setpagedevice ragusa l, et al. bmj open ; :e . doi: . /bmjopen- - open access caring and living with prader- willi syndrome in italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research letizia ragusa, antonio crinò, graziano grugni, luigi reale, alessandra fiorencis , maria rosaria licenziati, maria felicia faienza, malgorzata wasniewska, maurizio delvecchio, adriana franzese, irene rutigliano, paola fusilli, domenico corica, giuseppina campana, donatella greco, mariangela chiarito, michele sacco, silvia toscano, maria giulia marini to cite: ragusa l, crinò a, grugni g, et al. caring and living with prader- willi syndrome in italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research. bmj open ; :e . doi: . / bmjopen- - ► prepublication history and additional material for this paper are available online. to view these files, please visit the journal online (http:// dx. doi. org/ . / bmjopen- - ). received december revised june accepted july for numbered affiliations see end of article. correspondence to alessandra fiorencis; afiorencis@ istud. it original research © author(s) (or their employer(s)) . re- use permitted under cc by- nc. no commercial re- use. see rights and permissions. published by bmj. abstract objectives prader- willi syndrome (pws) significantly impacts health- related quality of life; however, its relational and existential aspects remain unknown in italian clinical and social debate. the project aimed to investigate the impact of pws on illness experience through narrative medicine (nm) to understand the daily life, needs and resources of patients with pws and their caregivers, and to furnish insights for clinical practice. design and setting the project involved medical centres of the italian network for rare diseases and pws family associations and targeted underage and adult patients with pws and their caregivers. written interviews, composed by a sociodemographic survey and a narrative, were collected through the project’s website. three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. narratives were analysed through nvivo software. researchers discussed the results with the project’s steering committee. participants twenty- one children and adolescents and adults with pws joined the project, as well as caregivers. a pws diagnosis or the caregiving of a patient with pws older than years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in italian. results the analysis of narratives led to understanding the pws social and relational issues concerning diagnosis and current management, pws daily experiences and social contexts, pws implications in the working sphere and participants’ future perspectives. narratives demonstrated that pws management affects relationships and work- life balance and that social stigma remains present. conclusion the project represented the first effort to investigate the impact of pws on illness experience in italy through nm while considering the perspectives of patients with pws and their caregivers. the findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement. introduction prader- willi syndrome (pws) is a rare genetic condition caused by an absence of functioning paternal genes on chromosome in the q - q region : approximately %– % of the cases are due to the dele- tion of this region, %– % are caused by a maternal uniparental disomy of chromosome and most of the remaining %– % have an imprinting centre defect or unbalanced translocations (~ %). pws occurs in approx- imately in – births, affecting both sexes and all geographic areas. neonatal hypotonia, poor sucking and feeding difficulties characterise pws in early infancy; dysmorphic signs (mild craniofacial abnormalities, small hands and feet, kypho- scoliosis), multiple endocrine abnormalities (growth hormone (gh)/insulin- like growth factor- i axis dysfunction, hypogonadism, central hypothyroidism and central adrenal strengths and limitations of this study ► inclusion of patients with prader- willi syndrome (pws) perspective in the project. ► narrative medicine approach. ► participants did not equally represent the geograph- ical areas of italy. ► among patients with pws, researchers included only those able to write. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n a u g u st . d o w n lo a d e d fro m http://bmjopen.bmj.com/ http://orcid.org/ - - - http://crossmark.crossref.org/dialog/?doi= . /bmjopen- - &domain=pdf&date_stamp= - - http://bmjopen.bmj.com/ ragusa l, et al. bmj open ; :e . doi: . /bmjopen- - open access insufficiency) and developmental delay constitute other cardinal features of the syndrome. – learning disabili- ties, maladaptive behaviours and hyperphagia—leading to life- threatening obesity if uncontrolled—follow in childhood and adulthood. the mortality rate of patients with pws is higher than in the general population, with a % annual death rate across all ages. behavioural issues are noticeable in pws, including aggressive and obsessive- compulsive behaviours and skin picking, and patients present a higher risk of devel- oping psychiatric illness in adulthood ; food- seeking behaviours are particularly complex and significantly affect patients and caregivers’ health- related quality of life (hrqol). in particular, pws caregivers—compared with other families managing children’s disability or complex condition—report a higher level of stress, more difficulties in coping with symptoms, a higher caregiving burden and a lower hrqol. the clinical picture of patients with pws substantially differs during the lifespan, and the prognosis is signifi- cantly conditioned by proactive interventions to prevent morbid weight excess. currently, no treatment is avail- able for pws. however, early diagnosis combined with multidisciplinary care favourably influences the course of pws ; therefore, the diagnosis should be confirmed early during the neonatal period, with the support of genetic testing development. in this context, early gh treatment has beneficial outcomes on, for example, height, body composition, endurance and sense of well- being – ; furthermore, early treatment with recombi- nant gh positively affects the hrqol of patients with pws and caregivers. the social, relational, emotional and existential aspects of pws remain profoundly unknown, and the debate within italian clinical and social communities has been poor: the who has stressed the importance of researching the measurable dimensions of hrqol and—more broadly—illness experiences in leading clin- ical and social practice and recommends using narrative research. the discipline of narrative medicine (nm), based on illness narratives, pursues the integration of the disease- centred approach and is concerned with clin- ical aspects and the illness- centred and sickness- centred approaches, which respectively focus on individual experience and the social understanding of a specific condition, and both have often been neglected by the scientific community. the range of applications for nm is from clinical practice to therapeutic path design, education and research. in research, narratives have demonstrated possible interventions on a specific condition through the integration of all perspec- tives involved in the pathway of care. combining evidence- based medicine and nm provides clinicians methods to strengthen clinical practices with narra- tive competences. nm research addresses the indi- vidual’s experience when coping with distress caused by clinical conditions: it allows for the understanding of the profound experiences, needs and values of all actors involved in the care pathway. scientific soci- eties, healthcare facilities and patient associations have increasingly employed nm research findings to improve the organisation and efficacy of healthcare services, generating sustainability and fostering quality of care for patients and their social and relational contexts. the nm project ‘praxis: prader- willi excellence in care with story taking’ aimed to investigate the pws illness experience by employing the analysis of narra- tives (a) to understand daily life, real needs and personal resources of people with pws and their caregivers from diagnosis to current management, and by doing so, (b) furnish insights to support a multidisciplinary and a multiprofessional perspective in pws clinical practice. according to our review of the literature, no other project has addressed these issues simultaneously by considering the perspectives of underage and adult patients with pws and their caregivers. methods research design and setting the project was conducted in italy between october and july , as a part of a broader research project, and targeted people with pws and their caregivers, as well as professionals working with pws. the professionals underwent a webinar conducted by researchers from the ‘istituto studi direzionali’ (institute of management studies, istud) foundation to be trained in nm and on the project’s aims and methods; moreover, a parallel chart was identified as the most suitable nm tool to collect their narratives because it constitutes a personal notebook, parallel to the clinical record, in which profes- sionals can write their impressions and feelings in plain language as a supplement to technical and quantitative reports. participants with pws were given the possi- bility to express by drawing if under years old or if unable to write; however, some participants over the threshold of years old decided to maintain both the opportunities of expression. the target group was people with pws aged older than years and their caregivers. participants were recruited from medical centres for paediatric and adult patients in the italian network for rare diseases (online supplementary material ), namely six general hospitals and four scientific institutes of research, hospi- talisation and healthcare: all the medical centres were macroregional, hospital- based centres that specialised in pws treatment, and they were distributed among geographical areas (north, central and south italy). the italian prader- willi federation, and the prader- willi association of the lazio region were also involved in disseminating the project; in particular, they organ- ised three seminars—one each in the lombardy, lazio and sicily regions—to provide the caregivers of those o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n a u g u st . d o w n lo a d e d fro m https://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ ragusa l, et al. bmj open ; :e . doi: . /bmjopen- - open access regions the opportunity to be further informed on nm and the project’s aims and methods. a pws diagnosis, determined at the reference medical centre, or a caregiver for a person older than years with pws represented the eligibility criteria, as well as the willingness to share their illness experience by writing; thus, the ability to communicate in italian was indispensable for the inclusion in the project. participants were informed of the possibility to view the projects (in italian) on the project’s web page: www. medicinanarrativa. eu/ praxis data collection written stories of experiences were collected anonymously through the project’s web page; next, raw and anonymous narratives were downloaded as a microsoft excel spread- sheet. a sociodemographic survey constituted the written narrative, together with an illness plot, namely a plot related to the illness experience: it serves to guide narra- tives in a chronological order to identify evolutions over time and is characterised by evocative and open words that facilitate individual expression. three illness plots were designed for three different groups—underage and adult patients with pws, and caregivers (online supplementary material )—while addressing common aspects: (a) diagnosis and current management of the condition, namely the strategies related to food behaviours; (b) daily living with pws, namely the relational sphere and social context; and (c) the work experience and future perspectives. the project design and the research tools were created by the project’s steering committee, which comprised three endocrinologist experts in pws, namely one each from the oasi maria ss research institute (troina, italy), the bambino gesù paediatric hospital of palidoro (rome, italy) and the istituto auxologico italiano of piancavallo (oggebbio, italy), and three researchers from the istud foundation different for academic backgrounds, to reduce the personal influence on the research. patient and public involvement the research was conducted without patient involve- ment. patients did not participate in developing the research design and tools and were not engaged in the interpretation and discussion of the results. patients were not invited to contribute to the writing or editing of this document. ethical considerations the project was performed according to the principles of the declaration of helsinki. before the participants’ involvement, they provided written informed consent after being briefed on the project’s purpose and confi- dential data handling procedures, according to the table sociodemographic data of participants minors with pws (n= ) adults with pws (n= ) pws caregivers (n= ) gender (%) females ( ) ( ) ( ) males ( ) ( ) ( ) non- responses ( ) age (years) mean (sd) ( . ) ( . ) ( . ) minimum maximum geographic residence (%) northern italy ( ) ( ) ( ) central italy ( ) ( ) ( ) southern italy ( ) ( ) ( ) non- responses education (%) elementary school ( ) ( ) ( ) middle school ( ) ( ) ( ) high school ( ) ( ) ( ) university degree ( ) ( ) non- responses ( ) ( ) marital status (%) single ( ) ( ) ( ) married/ cohabitate ( ) ( ) divorced/ separated ( ) widowed ( ) non- responses employment status (%) student ( ) ( ) ( ) working ( ) ( ) not working ( ) ( ) retired ( ) non- responses data presented as n (%) or mean (sd) and minimum/maximum. pws, prader- willi syndrome. figure age of children with prader- willi syndrome (pws) at diagnosis. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n a u g u st . d o w n lo a d e d fro m www.medicinanarrativa.eu/praxis. www.medicinanarrativa.eu/praxis. https://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ ragusa l, et al. bmj open ; :e . doi: . /bmjopen- - open access italian law / on privacy and the safeguarding of sensitive data and the general data protection regula- tion of the european union / . involved profes- sionals obtained written informed consent to participate from parents and tutors for underage participants during the first interview on the project’s methods and purposes. next, the professionals briefed the underage patients on the project and obtained their verbal consent to partici- pate. moreover, written informed consent to participate was obtained from adult participants and/or their tutors when appropriate. the ethical committee of the oasi maria ss research institute (troina, italy) approved the project in january with the ethics approval number / / /ce- irccs- oasi/ . analysis we analysed the sociodemographic survey through descriptive statistics; no question was mandatory. we separately examined the caregivers and patients’ perspectives. anonymous narratives were entered into nvivo software for coding and analysis. istud researchers collectively coded narratives in nvivo to assess consistency across team members. afterwards, each narrative was coded separately by at least two researchers and then reviewed during weekly meetings and peer debriefings to reduce bias in the interpretation of texts. open interpretive coding was employed to identify and analyse emerging topics; kleinman’s classification was retrospectively applied to the analysis of narratives because the researchers considered it the most suitable to further reveal illness- related and sickness- related aspects in narratives, respectively concerning the personal and emotional experience of a condition and how it is perceived within society. the analysis process and results were shared within the project’s steering committee to collectively address table illness and sickness- related aspects: quotes from narratives caregivers minors and adults with prader- willi syndrome illness ► it is not easy to live with a child who has this syndrome, especially when she asks for food. i tell her ‘no,’ and she starts to cry and get upset, screaming and saying things to me that i do not understand, but i do not give up. (caregiver ) ► i was nervous. i didn't know what was happening. yet in the delivery room, when i saw my baby, she was beautiful! what was the problem? when i talked to a geneticist the next day, i started crying. (caregiver ) ► broken dreams, the feeling that something has changed forever—that my life has changed. i used to be so self- confident, so independent, and suddenly, i felt fragile, scared, and alone—dreadfully alone, unable to react. (caregiver ) ► when my son was born, the doctors immediately told me that something was wrong. it was terrible. i was young, and he was my long- awaited first child. (caregiver ) ► i feel proud. my disability does not scare me. (adult with pws ) ► sometimes i feel happy, and sometimes i am sad because of my disease. (adult with pws ) ► i want to be with the other non- disabled kids—my only problem is eating. (minor with pws ) ► i mostly feel happy, but sometimes i am a bit sad about my illness. i am happy because the lord created me, and i like myself as i am when i came into existence. (adult with pws ) sickness ► food is not the only danger: anything can happen to my son, he can be tricked or manipulated. (caregiver ) ► when my daughter was diagnosed with prader- willi syndrome, i felt terrible, because i couldn't accept the syndrome and because i saw the other mothers with their children, happy and carefree, and i knew it wouldn't be like that for us. over time, i learned to accept the situation. my daughter's disability does not mean not living—it means living differently. (caregiver ) ► i was upset. it was hard to believe that my daughter could not have a future like all the other children. (caregiver ) ► often, we felt desperate, especially as we thought about our son's future, but then, we learned to deal with problems as they arose. (caregiver ) ► i do not feel equal to the kids of my generation. i hate myself. i want to die. sometimes i would like to be a boy like the others and to always be happy. (adult with pws ) ► the effects of prader- willi syndrome last throughout one’s lifetime. it is difficult to communicate with others, even with my own parents. (adult with pws ) ► other people are bad. they do not care about me because i have this syndrome. (minor with pws ) ► on the one hand, i feel different from others because i am disabled and hypotonic. on the other hand, i do feel like them because i am lucky enough to walk, to see and to hear. (adult with pws ) pws, prader- willi syndrome. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n a u g u st . d o w n lo a d e d fro m http://bmjopen.bmj.com/ ragusa l, et al. bmj open ; :e . doi: . /bmjopen- - open access emerged topics and interpretation of data. researchers followed the standards for reporting qualitative research reporting guidelines. results sociodemographic aspects twenty- one children and adolescents and adults with pws participated in the project, as well as caregivers. table summarises the sociodemographic data of these three groups; the representation includes non- responses as a separate category. results from the analysis are presented by following the dedicated illness plots’ structure: (a) the first section concerns pws diagnosis and current management, in which narratives’ illness- related and sickness- related aspects, caregivers’ perspectives on therapeutic path and strategies to manage food- seeking behaviours are addressed; (b) the second section focuses on living with pws in relational and social contexts and addresses partic- ipants’ indoor and outdoor daily activities; (c) the third section concerns the narratives on the working sphere of caregivers and adult patients with pws and participants’ future perspectives and desires. from diagnosis to the current management of pws thirty- six per cent of caregivers reported that their chil- dren were diagnosed with pws within the first month of life (figure ); however, % affirmed that the diagnosis occurred after the child’s third year of life. in narratives, % of caregivers focused on pws illness and sickness- related aspects (table ); the remaining % adopted technical and clinical language to discuss the condition, as exemplified in the following two quotes from narratives: (a) she was hospitalised at the neurology department for a muscle biopsy; diagnosed with congenital myop- athy and years later, underwent the dna test. she was sent to a hospital in northern italy, and from there, we got the prader- willi diagnosis (caregiver ). (b) he underwent nine surgeries: adenoids, laryngotomy, broken arm fracture, desmoid, flat foot, strabismus. he has been taking gh since he was a child (caregiver ). disbelief, displacement, anger and pain represented the most recurrent emotions expressed by caregivers when attempting to adapt to the situation and its criticalities. patients with pws—underage and adult— described the condition only through its illness- related and sickness- related facets. in table , a focus on therapeutic paths from the care- givers’ perspective meant addressing (a) relationships with different professionals and (b) healthcare struc- tures, and the (c) necessary or employed treatments, beyond diet. from caregivers’ narratives, food- seeking behaviours emerged as the most challenging event within the domestic context. caregivers were aware that feeding is the first treatment for people with pws and sought strat- egies to feed them. fifty per cent declared that they had achieved a balance, and the other % reported a prob- lematic relationship with food. both underage and adult participants with pws were aware of the importance of following a diet: positive or negative relationships with food emerged from narratives, where (a) the positive relationships also represented the result of commitment table perspectives from pws caregivers on the therapeutic path: quotes from narratives professionals ► thanks to our specialist, we got an appointment at the hospital, where we currently get care. they deal with many cases, and for us, this is a guarantee. on a human level, they are unparalleled, available, smiling; this lets us be more at peace, without feeling our burden. (caregiver ) ► i started meeting health workers, support teachers and incapable teachers, unprepared paediatricians, arrogant doctors, medical commissions, and courts. i clashed with bureaucracy, absurd health protocols and illogical rules to get what my daughter was entitled to and to support her psycho- physical well- being. (caregiver ) ► i was disappointed by the professionals. they talked about my son and my life as something that could not be changed, fatal, hopeless. i decided to get as far away as possible. my son was not a syndrome, he was a child. (caregiver ) healthcare structures ► we do not live in a big city, so we had great difficulty getting our daughter adequately seen to. (caregiver ) ► at the hospital, they presented us with the path we should have taken… on a medical level! for a therapeutic level, i had to resort to private professionals and centres. (caregiver ) ► miles of roads and hotel rooms characterise the therapeutic path that families must pass, both in economic terms and in terms of stress. (caregiver ) treatments ► this part was better than expected. the only medicine we use is gh, which is simple and painless. (caregiver ) ► psychomotricity, gh, speech and music therapy, psychological support and sports. (caregiver ) ► during his adolescence, we had to resort to psychiatric drugs: this felt like a defeat, but it was necessary. our son had become unmanageable. psychiatrists have little knowledge of the syndrome. (caregiver ) gh, growth hormone; pws, prader- willi syndrome. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n a u g u st . d o w n lo a d e d fro m http://bmjopen.bmj.com/ ragusa l, et al. bmj open ; :e . doi: . /bmjopen- - open access and several strategies to manage food- seeking behaviours, and (b) food seeking was related to emotions (eg, anger). table shows the main elements that emerged from the caregivers and pws participants’ narratives. living with pws in relationships and in social contexts thirty- six per cent of pws caregivers described daily life at home as quiet; however, most ( %) reported: fatigue ( %), chaos ( %), all- encompassing assistance ( %) and using tested routines to better manage food- seeking behaviours ( %). they have attempted to maintain their hobbies, interests and outside activities, even though their sons and daughters have pws (table ). relationships external to the family are difficult to preserve, imposing a radical change in social life. indoor and outdoor activities represented an essential tool for caregivers in managing emotion patterns and food- seeking behaviours: narra- tives demonstrated that underage and adult partici- pants with pws were aware of that. sport, mind activity games, gardening and pet therapy were some of the most helpful activities reported; furthermore, patients with pws appeared dedicated to cleanliness and routine activ- ities. both relational and activity spheres revealed the table attitudes towards food- seeking behaviours: quotes from narratives caregivers minors and adults with prader- willi syndrome commitment ► the first thing that i did was to visit a professor in switzerland to get a diet as pure as possible that could give strength and good energy to my child. i decided to follow it. (caregiver ) ► we began to have a different relationship with food and to be more aware of what we could and could not eat. (caregiver ) ► we tried to accustom the whole family to healthy eating as much as possible. i taught my son to read nutrition labels so that later he would be able to choose what is best. he already knows that he must not eat too much sugar and fat. we eat at fixed times, but it is not easy to manage his hunger. (caregiver ) ► i know eating a lot is bad for me. i follow my diet, so i don't get fat. (minor with pws ) ► i stay on my diet, and i never steal food. even if someone offers me something, i do not accept it. (adult with pws ) ► i am following a diet that was prepared by a nutritionist. (adult with pws ) strategies ► we are almost always able to keep it under control; we focus a lot on food education (ie, salads, vegetables, and no snacks). we let her choose among certain foods. this helped satisfy her, allowing us to eat differently. (caregiver ) ► food is the main problem for my child; there are both positive and negative moments. so, we are tough if we need to be, but sometimes we make exceptions. (caregiver ) ► food is always on our minds, but we try to manage everything in the best way we can. we try to live as normal a life as possible, and we try not to upset his habits. we give him some treats (he goes to parties, goes out with some friends, and can eat pizza). (caregiver ) ► i like to eat everything. i try to eat lots of vegetables, even if i do not feel full, and whole wheat pasta. when i am playing or doing a puzzle, i do not think about hunger. mom tells me that if i want to eat more, i have to move around more. (adult with pws ) ► i try to organise my day in fixed patterns, and i know i can eat at certain times. (minor with pws ) ► so, i do not think about food, i go for long walks, i do crossword puzzles and other puzzles and i play on my tablet and computer. (minor with pws ) criticalities ► unfortunately, food is an obsession and is challenging to manage. i have found my little child hiding food many times. (caregiver ) ► the food issue is a daily challenge. lunches and dinners are no longer quiet, and we live with anxiety. the kitchen is no longer a meeting place. (caregiver ) ► this is our conviction, a continuous struggle, day and night—the monster we have to defeat. (caregiver ) ► i eat outside of meals because i hate myself… i am hungry because my parents do not give me the right portions, and then i get fat and go to the hospital, i steal food… because i am hungry. i do not follow my diet. (adult with pws ) ► seeing other people eating is painful. (adult with pws ) ► when i think of food, my eyes shine, and when i see food, i want it at all costs, and i cannot stop myself. i am always hungry, and i never get enough; when i overeat, i feel sick. when they tell me that i should not eat so much, i get angry and anxious. (adult ) pws, prader- willi syndrome. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n a u g u st . d o w n lo a d e d fro m http://bmjopen.bmj.com/ ragusa l, et al. bmj open ; :e . doi: . /bmjopen- - open access influence of behavioural and emotional changes in daily life and in familiar and social contexts; moreover, narra- tives addressed the strong presence of caregivers, as well as situations of social inclusion or exclusion. work and future perspectives sixty- two per cent of family caregivers had to change their job after the birth of their child with pws (table ): more than one- third left their current work, % changed jobs to assist the child, % requested a part- time job and % abandoned the perspective of a career. from a gender perspective, % of female (mothers) and % of male caregivers had to change their current job to adapt to the child’s condition. forty- six per cent did not discuss pws in the workplace or discussed pws with only their closest colleagues; % reported comprehensive behaviours, and % declared a lower understanding of pws manage- ment necessities than for other diseases, such as cancer. based on the narratives, work was a positive personal resource. fifty- six per cent of adults with pws declared that they were working in jobs mainly characterised by low table living with prader- willi syndrome (pws) in activities and relationships: quotes from narratives caregivers minors and adults with pws indoor activities ► i like talking to my daughter, finding out what she wants to do and meeting her needs. i like to see her play with her friends and laugh because she is lovely and charismatic. (caregiver ) ► i love being with my family; i'm a full- time mom. i would like to go to the gym and to be a woman like others, but i do not have time. (caregiver ) ► in my spare time i am a musician. (caregiver ) ► i have two kittens at home. i take care of them. at home, i help my mother cleaning and ironing clothes and shirts. every day i take care of my hygiene and make my bed. (minor with pws ) ► mom does not want me to go to the kitchen. i do puzzles or embroidery. i watch disney cartoons. i read the newspapers. when i am sad or angry, i try to eat. i often quarrel with my mom. my dad says nothing because he makes me more upset. (adult with pws ) ► i watch television, i listen to music and i pray every day. every morning i make the beds, and i set the table while my parents are cooking. (adult with pws ) outdoor activities ► i refresh myself by being alone. i do yoga, i study japanese, i sing in a choir. i have not given up my passions. (caregiver ) ► as the years went by, i dedicated more and more time to my son. so, i gave up my passions to devote myself to him. i still cultivate a passion for sport, which i rarely practice. i love reading at night. (caregiver ) ► i would like to swim, to go for walks by the sea and around the lake. i would like to have no responsibilities, schedules or limitations; i would like to be a little carefree. (caregiver ) ► i do athletics, especially playing football and swimming. i go for walks with others, alone or with my dog. i like going to see my favourite football team play at the stadium. i play videogames and watch movies. i like going to see my favourite animal, the dolphin, at the dolphinarium. (adult with pws ) ► i try to help people in trouble. i do a lot of activities such as swimming pool, occupational therapy and kinesiotherapy because i have had back surgery twice for severe scoliosis. (minor with pws ) ► i like going out, shopping, swimming, listening to music, drawing, cutting and pasting, making figurines and making collages. (adult with pws ) relationships ► some people have tried to understand the condition, but others have disappeared. the syndrome helped me to choose from among the people around me. (caregiver ) ► my father and my mother were as sorry and as much in disbelief as i was, and they were unable to get over it. my sister and friends supported me. my husband shut himself off, and he is present and absent at the same time, except for practical things. (caregiver ) ► the grandparents have been fantastic, available and always ready to help us. our friends did not understand our situation, and our roads soon split: your social life changes radically. (caregiver ) ► my parents are the closest and most valuable people. they are strict but affectionate and loving. i am always looking for contact with them, even if i have made them angry. my brothers are also close to me. one of them is playful, and the other one is protective, a little severe. with them, i am calm and feel protected. (adult with pws ) ► at school, i have tried to get closer to others, but they do not like to be with me and do not want me. my professors love me; however, with some of them, i feel that i am different and not good. as for my parents, my biological mother did not love me, and my father hated me; my new parents love me so much. (adult with pws ) ► i love my family. they do everything they can to make me happy. (minor with pws ) o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n a u g u st . d o w n lo a d e d fro m http://bmjopen.bmj.com/ ragusa l, et al. bmj open ; :e . doi: . /bmjopen- - open access complexity and repetitive operations and conducted in social cooperatives or centres, small companies with high corporate social responsibility and family companies. work is a source of pride and well- being and a distrac- tion from food, but episodes of irritability and aggressive behaviours have been reported. regarding future perspectives, pws family caregivers hope to have long lives so that they can care for their sons and daughters as long as possible, and they were partic- ularly concerned with what would happen to their chil- dren without familial support (table ). caregivers also addressed social inclusion, such as social changes and openness, rather than clinical solutions to pws. adult participants with pws demonstrated self- realisation through work ( %)—as underage participants did—and table prader- willi syndrome and the work sphere: quotes from narratives adults with pws ► my colleagues are supportive; they are good listeners and give me good advice. (adult with pws ) ► i deal with publicity, i answer the phone, i receive the people who visit, and i do other tasks that the office managers assign me. if i am happy and motivated, i do not go looking for food. i look for food only when i am nervous. i have made so much progress, and so i do it less. (adult with pws ) ► i often have nervous attacks and respond badly. i offend with swear words those who make fun of how i am doing my job. (adult with pws ) ► i work in a nursing home days a week. i wash laundry and iron and fold the guests’ clothes. i work with a girl who takes care of me and teaches me many things. every day i work with a different person, depending on the shift. with them, i feel good because they treat me like a normal person, and they praise me every time i work with them. (adult with pws ) pws caregivers ► my colleagues firmly support me. they give me the ability to meet my personal needs, which allowed me not to leave my son and my wife alone. they were like a second family to me, and they all contributed as much as they could. (caregiver ) ► i had to leave work. i was working in the factory hours a day, and it was not possible to ask for a part- time position. (caregiver ) ► the job was a safety valve, a place to have a normal life. (caregiver ) ► when another daughter of mine had cancer, my colleagues were very involved, helpful and supportive. everyone understands cancer. the disability is different, particularly the prader- willi syndrome, which is not very obvious. (caregiver ) pws, prader- willi syndrome. table living with prader- willi syndrome and future thoughts: quotes from narratives minors with pws ► when i grow up, i want to be a professor of endocrinology to study my syndrome. (minor with pws ) ► i want to be a vet because i love animals. (minor with pws ) ► i want to drive an ambulance and do many different jobs. (minor with pws ) adults with pws ► i want to start a family by adopting a child because i have so much love to give and to be with my boyfriend. i hope to work in the same place where i am. i do not know how to live without my parents; they help us a lot. (adult with pws ) ► i want to go live with the person i love the most in the world and to have children. above all, i want to become a famous singer, and personally meet all my favourite singers. i want to get married and live in a beautiful house with a pool. (adult with pws ) ► i hope that medicine will be able to find a drug to that can increase my satiety and limit my nervous hunger, which is unfortunately increased by my syndrome. some moments are hard to overcome. i hope to live as well as i can with the consequences of the syndrome, and i hope that doctors are able to find treatments to alleviate the challenges. i hope that other people will also be able to live better lives. (adult with pws ) pws caregivers ► i am sure that his future will be full of satisfaction. we are working to ensure a positive future for him and to find him a job that makes him happy and confident in his abilities. (caregiver ) ► i believe the future will be challenging; i hope that i am wrong, but i realised that most people care most about their own business. indeed, it is painful and challenging to care for or remain close to people with this kind of pathology. still, perhaps if people did their part and committed themselves more to social causes, the future could be different. we should learn from an early age that we need to help other people and stand by those in need. (caregiver ) ► as long as we, her family, are there, i think that her future is protected. what comes after is frightening, but i know i have to do something for her… i owe her that! (caregiver ) pws, prader- willi syndrome. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n a u g u st . d o w n lo a d e d fro m http://bmjopen.bmj.com/ ragusa l, et al. bmj open ; :e . doi: . /bmjopen- - open access the desire to have a family ( %), recover from pws ( %) and generally live well ( %). discussion the praxis project represents the first effort to investi- gate the pws illness experience in italy through nm by simultaneously considering the perspectives of underage and adult patients with pws and their caregivers. the project first aimed to understand their daily life, real needs and personal resources. fifty- five participants, namely children, adolescents and adults with pws, reported joy and pride in sharing their stories, also suggesting that using evocative and open words in structuring illness plots can be crucial to helping people to express them- selves. moreover, the collection of caregiving stories suggested a strong dedication to the survey and the need for caregivers to be listened to: they described writing as liberating, demonstrating its potential (a) to have a therapeutic effect and (b) to be a safe space from the attitude of passing, namely handling information considered discrediting or critical for the self to avoid social stigma. talking about pws emerged as a ‘taboo’. in illness- centred and sickness- centred narratives, caregivers encountered significant difficulties in socialising the chal- lenges pws imposes in daily life, as well as the pain of having a child ‘different’ from social imagery: we identify this as a social pain that also concerns caregivers when performing familiar criticalities. furthermore, caregivers considered the project a chance to invite society to inte- grate people with pws and to denounce the stigma that surrounds them. if the literature demonstrates cognitive impairment in people with pws, we would like to enrich the evidence by suggesting the consideration of the multiple intel- ligences these people demonstrate in their everyday experience. in line with gardner’s reflection, revealing alternatives to the standard forms of intelligence (the logical- mathematical and linguistic ones), the narratives demonstrated the constant use of visuospatial, musical, interpersonal, existential and introspective talents, resources and capabilities. in this regard, patients with pws have been reported to show above- average perfor- mance in several tasks implying visuospatial skills, which in the general population are linked with higher math abilities. in particular, the importance of multiple intel- ligences emerged in food- control strategies and activities, consequently suggesting that considering them may posi- tively influence the overall illness experience. considering the second purpose of the project, specific elements emerged from the analysis of therapeutic paths. pws diagnosis mostly occurred up to the child’s second year of life, but in some cases, a significant delay remained, particularly for those people living away from specialised centres. because timing is essential in pws treatment, training for neonatologists, geneticists and general paediatricians on pws might improve early diagnosis. moreover, the other professionals involved also must develop or strengthen specific pws competencies to appropriately address this condition. the narratives demonstrated some peculiar clinical pws characteristics, such as irritability, aggressive and obsessive- compulsive behaviour and food- seeking behaviours. the last resulted in the most challenges for the people with pws and their caregivers: food manage- ment strategies, and indoor and outdoor activities and school or work schedules, can help people with pws and their caregivers improve their relationships with food and family members, enhancing overall daily life. diet management and strategies, early gh therapy, clinical and psychiatric treatments, activities in special- ised or social centres and the different professional roles involved demonstrated that a mutiprofessional approach that integrates the factors of hospital and territory is fundamental to ensure adequate treatment of pws and to mitigate the burden of caregiving reported in the narratives and the literature. – in particular, two related topics emerged: (a) mostly women (mothers) changed or retired from work to become a caregiver; (b) family care- givers stated their concerns regarding what will happen to their sons and daughters if no family members are avail- able—a topic already addressed by italian law / , on the social inclusion and autonomy of people with disabilities. these considerations also suggest, on the one hand, that social centres and services are crucial but need to be implemented in areas that have insufficient support for people with pws and their caregivers, and on the other hand, a focus on work policies to create autonomy and social inclusion. overcoming economic, legal and social barriers and improving the current service provi- sion still represent a challenge; patient organisations and scientific societies may have a crucial role in addressing these issues. furthermore, although a national plan for rare diseases has been developed in italy since , its application in daily practice remains demanding. one possible intervention strategy to reduce medical barriers requires universities and scientific societies to develop specific educational programmes; in particular, creating a pws national register may help interface with similar international tools. the acknowledgement of the importance of multiple intelligences in everyday experiences may also improve the daily and relational life of people with pws or their caregivers, together with ameliorating the social stigma of pws and enhancing social inclusion. multiple intelli- gences might also become a tool in clinical practice to better evaluate people with pws; moreover, an evolving model for pws care should include modern technolo- gies, for example, video visits, remote monitoring and electronic health records. the participants in the project did not equally repre- sent the different geographical areas in italy because of the local distribution of expert centres in the manage- ment of care for pws, and this could be a selection bias. furthermore, the results are specific because of (a) the o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n a u g u st . d o w n lo a d e d fro m http://bmjopen.bmj.com/ ragusa l, et al. bmj open ; :e . doi: . /bmjopen- - open access voluntary nature of the project and (b) the critical differ- ence among italian regional healthcare systems; there- fore, further analysis is required. for people with pws, the inclusion criterion of being able to write represented another bias. in conclusion, this nm project provides new insights into the individual and social experiences related to pws and provides elements for improving multidisciplinary and multiprofessional perspectives on this condition: the social, relational and emotional aspects of pws crucially influence the illness experience and narratives that can foster the relationship between pws professionals, patients, families and the community. author affiliations unit of paediatrics and medical genetics, oasi maria ss research institute, troina, enna, italy autoimmune endocrine diseases unit, bambino gesù paediatric hospital- palidoro research institute, rome, italy department of auxology, istituto auxologico italiano, verbania, italy healthcare area, fondazione istud, baveno, verbano- cusio- ossola, italy obesity and endocrine disease unit, department of neuroscience, santobono- pausilipon children's hospital, naples, italy pediatrics unit, department of biomedical sciences and human oncology, universita degli studi di bari aldo moro, bari, italy department of human pathology of adulthood and childhood ‘g barresi’, university of messina, messina, italy metabolic diseases, clinical genetics and diabetology unit, giovanni xxiii children's hospital, bari, italy department of translational medical sciences, university of naples federico ii, napoli, campania, italy department of pediatrics, irccs casa sollievo della sofferenza, san giovanni rotondo, foggia, italy uoc neonatologia, ospedale ‘spirito santo’, pescara, italy department of biomedical sciences and human oncology, university of bari ‘a moro’, bari, italy department of translational sciences, university federico ii, naples, italy acknowledgements the authors wish to thank all participants in the project, the italian prader- willi federation and the prader- willi association of lazio region for their active contribution. acknowledgements are extended also to the researchers of the healthcare area of istud foundation for their useful role throughout this project and to enago ( www. enago. com) for the english language review. contributors conceptualisation: lragusa, ac, gg, lreale, mgm. analysis: lreale, af. investigation: lragusa, ac, gg, lreale, af, mrl, mff, mw, md, af, ir, pf, dc, gc, dg, mc, ms, st, mgm. methodology: lreale, mgm. project administration: lreale, lragusa, ac, gg, mgm. report visualisation: lragusa, ac, gg, lreale, af, mrl, mff, mw, md, af, ir, pf, dc, gc, dg, mc, ms, st, mgm. writing: af, lragusa, ac, gg, lreale, mgm. editing: af. funding sandoz unconditionally supported the istud foundation for the realisation of the project. competing interests none declared. patient consent for publication not required. ethics approval comitato etico dell’irccs associazione oasi maria ss (number id / / /ce- irccs- oasi/ ). the study was approved on january . provenance and peer review not commissioned; externally peer reviewed. data availability statement data are available upon reasonable request. all data relevant to the project are included in the present manuscript. original narratives are available in italian upon request at the email areasanita@ istud. it. open access this is an open access article distributed in accordance with the creative commons attribution non commercial (cc by- nc . ) license, which permits others to distribute, remix, adapt, build upon this work non- commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non- commercial. see: http:// creativecommons. org/ licenses/ by- nc/ . /. orcid id alessandra fiorencis http:// orcid. org/ - - - references butler mg, hartin sn, hossain wa, et al. molecular genetic classification in prader- willi syndrome: a multisite cohort study. j med genet ; : – . irizarry ka, miller m, freemark m, et al. prader willi syndrome: genetics, metabolomics, hormonal function, and new 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rare% diseases% - % -% eng% (en)% % % bunofficial% version% by% europlan% d.pdf http://www.europlanproject.eu/documentationattachment/italian% national% plan% for% rare% diseases% - % -% eng% (en)% % % bunofficial% version% by% europlan% d.pdf http://www.europlanproject.eu/documentationattachment/italian% national% plan% for% rare% diseases% - % -% eng% (en)% % % bunofficial% version% by% europlan% d.pdf http://www.europlanproject.eu/documentationattachment/italian% national% plan% for% rare% diseases% - % -% eng% (en)% % % bunofficial% version% by% europlan% d.pdf http://dx.doi.org/ . /eje- - http://dx.doi.org/ . /peds. - http://bmjopen.bmj.com/ 	caring and living with prader-­willi syndrome in italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research 	abstract 	introduction 	methods 	research design and setting 	data collection 	patient and public involvement 	ethical considerations 	analysis 	results 	sociodemographic aspects 	from diagnosis to the current management of pws 	living with pws in relationships and in social contexts 	work and future perspectives 	discussion 	references wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ ce palliative care.ajn a nimals of all kinds, including dogs, cats, and rabbits, are being used more and more often to treat acutely and chronically ill patients. the goal is to decrease stress and improve patients’ physical condition and attitudes, usually through a program that involves an animal and a handler assigned to a single patient. the therapy uses ani- mals that have been evaluated for temperament, are in melinda stanley-hermanns is a senior lecturer and course coordinator in the college of nursing and health sciences at the university of texas at tyler. julie miller is a staff development educator in critical care at trinity mother frances health system, also in tyler. contact authors: melinda stanley-hermanns, mhermanns@mail.uttyl.edu; julie miller, millerj@trimofran.org. the authors would like to thank katherine connor, rn, for assisting with data collection for their unpublished study, dr. linda klotz, sponsoring professor for the study, and stephanie alred, statistician. ajn@lww.com ajn � october � vol. , no. by melinda stanley-hermanns, msn, rn,bc, and julie miller, bsn, rn, ccrn domestic animals aren’t merely pets. to some, they can be healers. animal-assisted therapy chester, an eight-year-old springer spaniel, bonds with a patient in the mount sinai pet-assisted therapy program in new york city. helping out are chester’s owner, sharon green, right, and nurses alice mathis, left, and millicent james, center. ajn � october � vol. , no. http://www.nursingcenter.com dogs at ground zero what started as a recovery mission to new york city turned into a therapy mission. when air traffic was grounded on september , , and only military aircraft were allowed into u.s. airspace, a c- cargo plane, escorted by u.s. fighter jets, carried search-and-rescue dogs and their part- ners to new york city. among them were robert wank, an investigator with the orange county sheriff’s department in california, and his partner, aris, a -year-old pure- bred black german shepherd and advanced-certified search-and-rescue dog, as well as wank’s human part- ner seth peacock and his black labrador partner, pup dog. the call came just hours after the world trade center collapsed, and aris, who had officially been retired, was back on duty. aris and pup dog joined about other police dogs to search for survivors. unfortunately, during their -day stint at ground zero, aris and pup dog grew frus- trated at finding no victims. a few times, to keep the dogs’ spirits up, wank and peacock took turns hiding in crushed ambulances that had been cleared from the site so that aris and pup dog could “search” for and “rescue” them. “we had to do it to keep them motivated,” wank said. “to a search and rescue dog, finding victims means you’re doing a good job. we let them find us and then rewarded them with a toy.” in turn, aris and pup dog elevated the moods of workers by walking around the site, which many of the workers hadn’t left since the buildings collapsed. wank noticed that while he and aris searched their assigned quad- rants, the work- ers seemed genuinely happy to see aris, often smiling at him and offering their water. at meal breaks the dogs were especially popular, and the workers eagerly fed them. each day before heading to ground zero, this two-man, two-dog team stopped by fire- houses, provid- ing a pleasant distraction from the devastation. “the dogs gave these people something else to talk about—something nice,” wank said. dogs like aris and pup dog are trained by the office of emergency services or by the federal emergency management agency, which trained aris because of his breed and bloodline (german shepherds from the czech republic that have received schutzhund training, involving three stages: tracking, obedience, and protection). ground zero was aris’s last mission: he’s gone back into retirement and lives with wank and his family as their much-loved pet. —carrie potter, senior editor wank and aris, foreground, in the rubble of the world trade center, september , above, and around new york city in the days after the terrorist attacks, above right and below. good health, and have undergone extensive training that involves obedience and behavioral conditioning. in florence nightingale wrote “a small pet animal is often an excellent companion for the sick, for long chronic cases especially.” she recommended that patients care for animals, stating that this was beneficial to recovery. animals have been used in various cultures for therapeutic purposes for thou- sands of years and their use appears to be gaining acceptance in hospitals, nursing homes, and psychi- atric institutions. many physiologic and psychologi- cal benefits have been noted in patients during interactions with animals: specifically, decreases in blood pressure, heart rate, and stress levels. also, improvements in emotional well-being and social interaction have been linked to the therapy. this arti- cle examines the benefits of animal assisted therapy in hospitalized patients, provides guidelines for setting up a program, and reviews some current research. physiologic benefits most studies that support the physiologic benefits of animal-assisted therapy indicate an increase in relaxation, as evidenced by reductions in blood pressure and heart rate. in a study of , patients at a free clinic in melbourne, australia, participants in a cardiovascular screening program were questioned about pet ownership. results showed pet owners to have significantly lower sys- tolic blood pressure and triglyceride levels than non–pet owners (this finding was independent of exercise). a study of men and women found a correlation between dog ownership and control of borderline hypertension (the average reading of participants was / mmhg). the study compared two groups: those who adopted a dog from a shelter and those involved in a program of transcendental meditation. psychological stress tests were administered and blood pressure and heart rate were measured initially and after three months. at the beginning of the study both groups showed significant increases in systolic blood pres- sure in response to the stress tests. both groups also showed high systolic blood pressure levels while at work. after three months, the dog owners showed significant reductions in resting blood pressure and ambulatory blood pressure while at work. those who practiced transcendental meditation showed ajn@lww.com ajn � october � vol. , no. chester is usually pretty laid back, says aimeeschonbrun, coordinator of the mount sinai pet-assisted therapy program in new york city. but when it comes to working with patients, chester is one excited springer spaniel. chester and his owner, sharon green, are part of mount sinai’s two-year-old ani- mal-assisted therapy program, where pets and their owners pay weekly visits to help patients with physical rehabilita- tion. eight-year-old chester and his canine colleagues are a huge success, schonbrun says. “i see how patients benefit from this program, especially because they are so isolated,” she says. “when you’re a patient in a hospital, there’s no sense of time. days pass you by. but these pets bring these patients back into reality again.” the mount sinai program brings together ani- mals and patients who have brain damage or debilitating diseases. the premise is simple: the anticipation of an animal visit can motivate an injured patient to complete physical therapy beforehand, or it can inspire a patient to interact more closely with hospital staff during and after a pet’s visit. and petting or combing an animal or throwing a ball can be a simple yet vital exercise for a patient in physical therapy. “it’s fun, relaxing interaction,” schonbrun says. “it’s a change from constantly being bombarded by nurses and being poked and prodded with needles.” schonbrun has seen the effects that animals can have. a trained social worker, she previ- ously worked with abused chil- dren and saw how pet therapy brought them out of emotional isolation. the concept works similarly among hospitalized patients. “giving the dog a treat will get patients to work their hands without even realiz- ing it,” schonbrun says. “we have seen patients who will not talk for weeks and who suddenly just start talking to the dog.” one patient, who has a particularly severe brain injury, says chester’s weekly visits have been life altering. “these patients come here to relearn life skills—to walk, to talk. this particular patient began to really open up in her sessions with chester,” schonbrun says. “and chester is usually lazy, but even he is always very excited to see her.”—david belcher, associate editor pet-assisted therapy at mount sinai in new york one program alters lives. circle no. on reader inquiry card ajn@lww.com ajn � october � vol. , no. no significant changes. the researchers also men- tioned that all participants in the dog group kept the animals after the study was completed. in an attempt to establish a scientific basis for animal-assisted therapy, a study of dogs and humans measured neurochemicals and mean arterial pressure in both humans and dogs. the study, an unpublished phd thesis for the university of south africa, compared quiet reading with human–dog interaction and showed that the activities were almost equally effective in relieving human stress (as measured by increases in oxytocin, prolactin, and β-endorphin levels). however, the small sample size makes generalizability difficult. case reports of animals used in rehabilitation programs demonstrate other physical benefits. for example, a patient who has had a stroke might gain strength and muscle conditioning using a wrist weight to increase resistance while brushing an animal. further study is needed to confirm the benefits of animal-assisted therapy in the rehabili- tation setting. emotional benefits most people take pleasure in interacting with ani- mals, but some studies have documented the psy- chological benefits. barak and colleagues conducted a one-year controlled trial involving geriatric patients with schizophrenia, of whom interacted with a dog or cat in weekly four-hour sessions over a -month period. this group was compared with the control group of patients who read and dis- cussed current news. the animal-therapy group showed significant improvements in social function- ing, impulse control, and daily activities. connor and miller conducted a literature review and noted several psychological benefits of animal- assisted therapy that have been documented: decreased stress levels, increased feelings of self- worth, and assistance in adjusting to an altered body image. barker and dawson reported that animal-assisted therapy resulted in a twofold re- duction in anxiety over therapeutic recreational activities in patients who had a range of psychiatric disorders, although patients with mood and sub- stance abuse disorders showed no reduction in anx- iety with animal-assisted therapy. prisons use animal interaction as a behavior- modification tool and as a reward for good behav- ior. some prisons have set up training programs in which the inmates train animals; these programs appear to improve the self-esteem of inmates involved. benefits of touch. although the benefits of human touch have been documented, there have been few studies investigating touch in animal-assisted ther- apy. in an unpublished study conducted by one of us (stanley), conducted at trinity mother frances setting up a program the following steps are recommended when starting an animal-assisted therapy program. select a coordinator who has experience withanimal behavior, if possible. the coordinator will have the following responsibilities: • investigate and select animal-assisted therapy certifying organizations. • develop policies and procedures based on the recommendations of certifying organizations. • perform a needs assessment to identify patient populations that animal-assisted therapy will serve. • incorporate institutional recommendations for infection control, volunteer requirements, and animal behavior in developing policies and procedures. • recruit therapy animal handlers and volun- teer teams; have them submit applications for evaluation by the certifying organization. • review applications and health screening forms for therapy animal handlers and volun- teers (for example, coordinator would reject any dog that has ever bitten anyone). • using evaluators from certifying organiza- tions, perform temperament evaluations of therapy animals. • plan and conduct training sessions for han- dlers and volunteers. (training sessions should be conducted at least annually.) • hold educational inservice training to teach staff about referrals, infection control, indica- tions for therapy animal use, and patient safety. • conduct annual evaluations of performance and of the effectiveness of the animal-assisted therapy program. circle no. on reader inquiry card ajn@lww.com ajn � october � vol. , no. health system in tyler, texas, using the profile of mood states–short form, patients’ moods were assessed before and after animal-assisted therapy. patients on a transitional care unit interacted with dogs by petting and cuddling them for about five minutes every day. this small sample of partici- pants demonstrated a reduction in anger, hostility, tension, and anxiety. therapy vs. visitation there are differences between animal-assisted visi- tation and animal-assisted therapy. animal-assisted visitation simply uses certified therapy animals to visit patients and families at the bedside or in a common waiting area. the goals of visitation include reducing anxiety, increasing tac- tile contact, and improving self-esteem. reduced anxiety may be measured by a decrease in heart rate and blood pressure, as well as the patient’s report. this activity may enhance strength and range of motion. it’s common for patients to report feeling more optimistic about a medical procedure after animal visitation. animal-assisted therapy is done one on one, and should be performed by a trained practitioner (a nurse may locate a trainer through certifying organizations; see resources, page ). therapy goals include improving strength, range of motion, balance, memory, and speech. these goals can be accomplished by using the animal as the focus of the patient’s exercise. for example, a hemiplegic patient can brush an animal or throw a ball to be retrieved to strengthen the upper body and improve movement and balance. a patient with expressive aphasia can work on naming body parts, pronouncing words about the animal, and exercising facial muscles by blowing on the ani- mal’s hair. but is it safe? zoonosis (the transmission of disease between ani- mals and humans), infection control, and safety are often the biggest barriers to animal-assisted therapy programs. in emmett stated that “there have been no documented cases of disease transmission” in animal-assisted therapy programs. we found no documented cases in . handlers must wash their hands with soap and water between patients. animals must be clean (bathed within hours), currently vaccined, and free of disease and parasites. animals must always be kept on a leash or in a basket and under the han- dler’s complete control. policies and procedures initially, the certifying organization for therapy ani- mals must be researched thoroughly. the key to a safe animal-assisted therapy program is to have consistent evaluation and training guidelines for the handlers and animals as well as nurses. not all organizations uphold stringent standards. the min- imum should include evaluation of animals based on temperament and the quality of the interaction between animal and handler; the handler shouldn’t be harsh with the animal or command too loudly. the animal shouldn’t shy away from the handler. both animal and handler should exhibit enjoyment of each other’s company. also evaluated is the ani- mal’s ability to follow basic commands to sit, stay, heel, and lie down. these tests should be conducted in the facility in which the animal will work. animal evaluations vary according to the certify- ing organization. at minimum, they should consist of basic obedience with a variety of distractions (loud noises). these tests are frequently stressful for the animal and are designed to determine whether the animal will behave in ways inappropriate to a hospital or work setting. animal evaluators are trained to identify stress responses in animals and to pass or fail an animal based on observations made during the test. usually, the evaluator will try to eligibility criteria special requirements ❑ an altered level of consciousness or coma may necessitate verbal consent from a family member. ❑ wounds or burns must be covered during visit. ❑ tracheostomies must be covered with cap, ventilator, oxygen source, or other covering. ❑ intensive care environments require guid- ance from the nurse regarding the best way to approach the patient and avoid equipment. ❑ use with pediatric patients necessitates verbal consent from guardian for visitation and written consent from guardian for therapy. contraindications ❑ allergy to animal ❑ open wounds or burns ❑ open tracheostomy ❑ immunosuppression, as defined by institu- tion, using absolute neutrophil count ❑ agitation or aggression ❑ isolation of any kind ❑ fear of animals ajn � october � vol. , no. http://www.nursingcenter.com duplicate the conditions the animal may encounter during therapy. for example, if a patient is prone to shouting and moving suddenly, the evaluator will act similarly to gauge the animal’s reaction. each animal’s reactions may differ, as well, but displays of aggression, growling, distractedness, and nervous- ness will immediately disqualify an animal for ther- apy purposes. the types of certified animals the facility will allow should be decided in conjunction with the infectious disease committee. the most commonly used animals are dogs, probably because of ease of training (versus a cat or rabbit) and their usually even temperament. birds aren’t usually allowed (more than half the birds in this country carry infec- tions, such as mycobacterium avium). cats and rabbits are used and must meet the same criteria as dogs, but they are not required to follow com- mands. cats and rabbits must be trained to stay in a basket while petted (they may harbor bacteria in their paws). dog paws must not make contact with the patient. if a dog jumps on and injures a patient, a nurse should document the incident and notify the physician. if a patient requests that a dog be placed on the bed, a barrier (such as a sheet or towel) should be placed between the dog and the bed linens. patients’ requests for a specific breed or size of animal should be honored when possible. eligibility of patients. it’s the responsibility of the staff and animal-assisted–therapy coordinator to screen patients for eligibility. patients who are in any type of isolation or are immunosuppressed are disqualified. handlers should have no active infec- tions and all current immunizations, including a vaccine against hepatitis b virus, and undergo annual tuberculosis testing. any staff member at a facility that has a therapy coordinator may make a referral for visitation and therapy. our facility schedules bimonthly visita- tions, during which animals visit patients on several units: oncology, cardiology step down, pediatric, and intensive care. during these visits no referral is needed. and if a visit or therapy session is desired when an animal is not normally available, the coor- dinator will schedule a session. also, methods for referrals will vary according to institution. � references . nightingale f. notes on nursing: what it is, and what it is not. new york: dover publications; . . jorgenson j. therapeutic use of companion animals in health care. image j nurs sch ; ( ): - . . anderson wp, et al. pet ownership and risk factors for car- diovascular disease. med j aust ; ( ): - . . allen k. dog ownership and control of borderline hyperten- sion: a controlled randomized trial [web site]. delta society. [ ]. http://www.deltasociety.org/dsx .htm. . collins lf. pets in therapy? how animal assisted therapy can be a part of the healing process. ot practice ; : - . . barak y, et al. animal-assisted therapy for elderly schizo- phrenic patients: a one-year controlled trial. am j geriatr psychiatry ; ( ): - . . connor k, miller j. animal-assisted therapy: an in-depth look. dimens crit care nurs ; ( ): - . . barker sb, dawson ks. the effects of animal-assisted ther- apy on anxiety ratings of hospitalized psychiatric patients. psychiatr serv ; ( ): - . . hasenauer h. dogs for the disabled. soldiers ; jul: - . . emmett p. animal-assisted therapy: unleashing the power of pets. healthweek [october ]; - . . waltner-toews d, ellis a. good for your animals, good for you: how to live and work with animals in activity and therapy programs and stay healthy. renton, wash.: university of guelph; distributed by delta society; . resources delta society naches avenue sw, suite renton, wa - ( ) - ( ) - www.deltasociety.org therapet animal assisted therapy foundation po box whitehouse, tx ( ) - www.therapet.com personal pet visitation when patients want to see their own animals. some facilities use the following guidelines for personal pet visitation. • pet must be bathed within hours before visit. • pet must have current vaccinations. • pet must be brought in carrier or on short leash. • pet must be escorted into and out of facility by trained staff member. • pet must interact only with patient. • visits are time limited (usually minutes, once per week). animal may be forced to leave at any time. • institutional policies, in accordance with the americans with disabilities act, should cover animals that guide the physically impaired, including seeing-eye, hearing-ear, physical assistance, and seizure-detection animals. adapted with permission from connor k, miller j. animal-assisted therapy: an in-depth look. dimens crit care nurs ; ( ): - . © lippincott williams & wilkins. nursing news, features, jobs and specialty information at your fingertips. on theon the apply to the top travel companies with one application-it's that easy! search our database of permanent or travel positions and move your career into high gear. your one-stop on the web for professional tools, educational resources and free email. let nursing on the net and hyundai take you home holidays!for the win your choice of a hyundai sante fe, tiburon, or sonata. visit any of these nursing on the net affiliate sites to enter today! no purchase necessary to win. for official rules, visit participating sites. circle no. on reader inquiry card our success at work makes all the difference in yours. your success at work makes all the difference in your patients’ lives ... circle no. on reader inquiry card www.nursingworld.org on august , , the nurse reinvestment act became law: • provides loan repayment & scholarships to attract more people to nursing and put more nurses in shortage area • provides grants to facilities implementing magnet best practices to improve the workplace for nurses. through relentless lobbying, key testimony and the unified voice of its members, the ana made it happen! add your voice to ours and see what you can make happen. join us today. 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[pdf] theory of integral nursing | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / .ans. . . a corpus id: theory of integral nursing @article{dossey theoryoi, title={theory of integral nursing}, author={b. dossey}, journal={advances in nursing science}, year={ }, volume={ }, pages={e –e } } 	b. dossey 	published 	medicine 	advances in nursing science anchored in one of the most dramatic social shifts in healthcare history, a theory of integral nursing can inform and shape nursing practice, education, research and policy—local to global—to achieve a healthy world. a theory of integral nursing, informed by integral theory, presents the philosophical foundation and application of an integral worldview and process. this theory also recognizes florence nightingale's philosophical foundation and legacy, healing and healing research, the meta… expand view on wolters kluwer thhin.nursing.arizona.edu save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations view all supplemental presentations presentation slides theory of integral nursing explore further discover more papers related to the topics discussed in this paper topics from this paper 	health care reform 	esthetics (discipline) 	addresses (publication format) citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency nursing perspectives on integral theory in nursing practice and education: an interpretive descriptive study 	linda shea, s. reimer-kirkham, noreen cavan frisch 	psychology, medicine 	nursing inquiry 	 save alert research feed exploring the theory of integral nursing with implications for pain management practice 	s. tracy, p. dinapoli 	psychology 	international journal for human caring 	 	 	highly influenced 	view excerpts, cites background save alert research feed spiritual knowing: another pattern of knowing in the discipline 	danny g willis, danielle m. leone-sheehan 	psychology, medicine 	ans. advances in nursing science 	 	 save alert research feed wilber’s integral theory and dossey’s theory of integral nursing 	linda shea, n. frisch 	sociology, medicine 	journal of holistic nursing : official journal of the american holistic nurses' association 	 	 	highly influenced 	view excerpts, cites background save alert research feed perspectives on the unitary transformative person-environment-health process for the knowledge base of nursing 	m. j. smith, j. fitzpatrick 	psychology, medicine 	ans. advances in nursing science 	 	 save alert research feed nursing theory in holistic nursing practice 	n. frisch, pamela j. potter 	psychology 	 	 	pdf save alert research feed analysis of nursing concept using mckenna approach 	m. nikravan-mofrad, s. yazdani, s. ahmady, m. tafreshi 	psychology 	 	pdf save alert research feed the emancipatory praxis of integral nursing: the impact of human caring theory guided practice upon nursing qua nursing in an american nurses credentialing center magnet(rtm) re-designated healthcare system 	l. w. marks 	medicine 	 	 	highly influenced 	pdf 	view excerpts, cites background and methods save alert research feed core value : holistic philosophy, theorie and ethics. 	b. dossey 	medicine 	beginnings 	 	 	pdf save alert research feed anything but basic: nursing's challenge in meeting patients' fundamental care needs. 	a. kitson, Åsa muntlin athlin, tiffany conroy 	medicine 	journal of nursing scholarship : an official publication of sigma theta tau international honor society of nursing 	 	 	view excerpt, cites background save alert research feed ... ... references showing - 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( ) - doi: http://dx.doi.org/ . /j.explore. . . reference: jsch to appear in: explore cite this article as: elizabeth kendall, annick maujean, christopher a. pepping, john j. wright, hypotheses about the psychological benefits of horses, explore, http://dx. doi.org/ . /j.explore. . . this is a pdf file of an unedited manuscript that has been accepted for publication. as a service to our customers we are providing this early version of the manuscript. the manuscript will undergo copyediting, typesetting, and review of the resulting galley proof before it is published in its final citable form. please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. www.elsevier.de/endend hypotheses about the psychological benefits of horses elizabeth kendall , , annick maujean , , christopher a. pepping , , john j. wright , centre for national research on disability and rehabilitation medicine (conrod), griffith university, australia centre for community science, griffith health institute, griffith university, australia. correspondence should be addressed to: professor elizabeth kendall, phd centre for national research on disability and rehabilitation medicine (conrod) and the centre for community science, griffith health institute, griffith university, meadowbrook q australia telephone: facsimile: email: e.kendall@griffith.edu.au abstract in the last few decades, therapeutic horse-riding has become recognized as a progressive form of therapy, particularly for people with disabilities. although there is a substantial amount of literature that supports the physical benefit of therapeutic riding, only anecdotal evidence exists in relation to its psychological benefits. the purpose of this paper was to develop hypotheses about the mechanisms by which therapeutic riding might have a beneficial psychological effect. these hypotheses can then be tested, leading to a more detailed knowledge base. to develop these hypotheses, we examined the current literature to identify the implied hypotheses about why horse riding might be psychologically beneficial. three potential hypotheses emerged from the literature, namely, ( ) that the psychological benefits of therapeutic riding are actually unrelated to the horse; ( ) that the horse provides a particularly positive context within which psychological gains are facilitated; and ( ) that the horse itself has specific therapeutic qualities that bring about unique changes not otherwise likely to occur. the challenge for researchers in this area is to design studies that adequately test these competing hypotheses. keywords therapeutic riding, equine therapy, physical and psychological well-being hypotheses about the psychological benefits of horses over the last few decades, horse-riding has become recognized internationally as a progressive form of therapy for people with disabilities and/or disadvantage ( , ). therapeutic riding is differentiated from recreational riding in that the term refers to the use of the horse and equine-oriented activities to bring about the achievement of a range of positive outcomes, including, physical, emotional, social, cognitive, behavioral, and educational goals ( ). across the world, there is much variation with regard to the way in which different organizations conduct and implement therapeutic riding. indeed, therapeutic riding has been referred to by many different names, including equine facilitated therapy, equine assisted learning therapy, hippotherapy or riding for the disabled (rda). in this paper, we will use the term “therapeutic riding” to refer to all forms of therapy that utilize the horse to achieve positive outcomes, even if the intervention only involves contact with the horse rather than actual riding activity. the beneficial physical effect of therapeutic riding has been documented (e.g., - ). however, in addition to its physical benefit, some proponents have suggested that therapeutic riding has a range of psychological benefits ( ) and, therefore, should form the basis of a legitimate psychotherapeutic activity. indeed, there is evidence that over half of people in need of psychological assistance, particularly men and those from other minority groups, are unlikely to access traditional interventions ( ) and that choice about the nature of that intervention was strongly associated with success. these findings highlight the importance of offering less traditional psychotherapeutic methods such as therapeutic riding. little is known, however, about how therapeutic riding programs might achieve positive psychological benefit. for instance, it is possible that these psychological benefits are merely an artifact of improved physical mobility ( ). in fact, the negative psychological impact of decreased mobility in people with disabilities has been extensively researched ( - ), giving credence to this possibility. unfortunately, however, there is little empirical evidence available to address these questions ( , ). the purpose of this paper is to use the available evidence to generate hypotheses about the mechanisms by which therapeutic riding may influence psychological outcomes. these hypotheses can then form the basis of further empirical testing, giving structure to the area in future. history of therapeutic riding the premise of therapeutic riding is that horses have been an essential and meaningful partner for humans throughout time, and have been recognized for their role in emotional recovery. the horse was first acknowledged as a healing agent in early mythology, when a physician is said to have prescribed horse-riding for those with untreatable conditions as it would cheer their spirits ( ). in , a scottish physician suggested that the riding of a spirited horse should be a recognized treatment for people with depression because it stirred ‘life forces’ into activity ( ). indeed, it has been claimed that, in the ’s, horse-riding was prescribed for the pope to assist with his ailments ( ). although not specific to the horse, researchers have found evidence that florence nightingale advocated for the integration of animals into health care settings ( , ). similarly, sir winston churchill is purported to have publicly claimed that, “there is something about the outside of a horse that is good for the inside of a man” (cited in ). these anecdotes indicate the generalized positive influence horses are thought to have on the psyche. despite these early indications that horse-riding can be psychologically beneficial, its integration into the health and welfare setting has not eventuated. although therapeutic riding was offered to wounded soldiers after world war i ( ), it was not until a danish rider with paralysis won a silver medal at the helsinki olympic games that riding for the disabled was established in england. shortly after that time, official therapeutic riding organizations also began operating in north and south america, europe, asia and australia; a testament to the growing demand for therapeutic riding among people with disabilities ( ). the psychological benefits of therapeutic riding with the increasing profile of therapeutic riding throughout the world, it has become necessary to document its benefits more systematically. although the physical benefits of riding have been explored to a reasonably sophisticated level, there is little more than descriptive evidence to support the psychological benefits of therapeutic riding ( , , ). the psychological outcomes examined in the existing literature have varied widely, and have included constructs such as self-esteem, self-efficacy, motivation, emotional well-being, and social and interpersonal relationships. observations of therapeutic riding programs have indicated that the most common emotional benefits associated with riding include increases in confidence, self-esteem and a sense of control ( - ). in an early study conducted by renaud (cited in ), people who had experienced a severe stroke were all referred to at least one year of horse-riding. although none achieved any lessening of their paralysis, there were significant improvements in strength and activity. importantly, all participants demonstrated improved emotional well-being, but whether or not this was a direct consequence of the therapeutic riding could not be determined. in a more recent study which examined the experiences of seven at-risk young people who participated in a therapeutic horsemanship program, the relationships participants developed with the horses during this program were thought to contribute to their gains in confidence, self-esteem, and mastery ( ). however, this data was gathered only at the end of the program so change over time could not be demonstrated. in another study that incorporated both pre-program and post- program data ( ), it was found that self-esteem increased significantly following therapeutic riding. however, it was not possible to attribute these changes to horse-riding due to the receipt of other remedial programs by the participants and the lack of a controlled study design. using serial video recordings over time, allori and pasquinelli ( ) demonstrated improved confidence, more effective social interaction and increased emotional attachment among riders for whom no improvements had been identified during the years prior to initiating therapeutic riding. although not conclusive evidence, there was a greater likelihood that improvements could be attributed to the horse because it was the only major change reported in the lives of these participants. in a more controlled pre- post study of therapeutic riding, klontz, bivens, leinart, and klontz, ( ) reported significant reductions in psychological distress and enhancements in psychological well- being. these improvements remained present at six months post treatment. however, without a comparable control group, it is difficult to determine whether or not these changes could be attributed to therapeutic riding or simply to the introduction of any activity. in another longitudinal study, ewing et al. ( ) found no pre-post differences in self-esteem, empathy, locus of control, loneliness, and depression among youths with severe emotional disorders. however, based on their observations and interviews, positive changes were reported in self-care, attitude, openness, and social skills, suggesting that quantitative methods may not be sufficiently sensitive to successfully measure the types of changes associated with therapeutic riding. pauw ( ) also noted a frequent discrepancy between qualitative and quantitative results in this area, and suggested that a distinction should be made between statistically significant differences and clinically meaningful changes. however, research has not yet tested this suggestion. despite the powerful anecdotal and descriptive evidence that supports the beneficial psychological outcomes associated with therapeutic riding programs, sound controlled research on this topic is scant ( ). basile ( ) concluded that the difficulties associated with conducting controlled research in this area means that although practitioners who use therapeutic riding may attribute psychological successes to the horse ( ), existing research does not enable this conclusion to be drawn ( , ). in this paper, we examine the causal attributions made by researchers in this field about the mechanisms by which horse-riding might have a beneficial psychological effect. our paper is based on the assumption that the anecdotal and descriptive conclusions represented in the literature are likely to reflect underlying hypotheses about how therapeutic riding influences psychological outcomes, even if these hypotheses are not articulated clearly. although the small amount of literature in this area generally lacks rigorous designs, published articles do contain implicit assumptions about the hypothesized mechanisms by which therapeutic riding may have a positive psychological impact. by examining these implicit assumptions, it is possible to generate hypotheses that can later be tested. thus, our paper will enable research to progress beyond questions of whether or not therapeutic riding is beneficial to more sophisticated questions about how this intervention is likely to influence psychological outcomes, if indeed it does. it may also encourage researchers to design studies that can test alternative hypotheses regarding the means by which horse-riding influences psychological health. method we conducted a review of the recent literature on therapeutic riding published between and inclusive. this narrow search period was selected to ensure that the literature from which hypotheses were drawn was based on the latest knowledge in the area. the most recent systematic review in this area ( ) focused on studies of equine facilitated psychotherapy published up to . the studies identified in this review were mostly published between and , following a rapid increase in therapeutic equine programs around the world triggered by the release of the equine facilitated mental health association practice standards in . thus, the studies conducted during this peak prior to were among the first to offer empirical evidence supporting the potential of therapeutic riding as a psychotherapeutic process. for our purpose, articles published following this boom period are likely to be better informed and more inclined to explore the mechanisms of these purported beneficial effects. the key-word searches were conducted of six relevant databases (psycinfo, medline, proquest, scopus, web of science, and cinahl). key words were (equine facilitated learning, equine facilitated psychotherapy, horse-riding, hippotherapy, therapeutic horse-riding, horsemanship, and equine therapy) paired with key terms (therapy, well-being, psychological benefits, physical benefits, social benefits, recreational, health, recovery, rehabilitation, healing, treatment, intervention, psychotherapy, illness, disability, and life skills). in addition, the reference lists contained in the retrieved articles were also examined for any additional articles that warranted inclusion. the initial search produced articles in total, which was reduced to when duplicates were removed. an initial review of the abstracts was conducted to remove articles that were clearly unrelated to the therapeutic use of horses, leaving articles. two raters then independently assessed the articles, and retained only articles that (a) were related to the psychological effects of therapeutic horse-riding; (b) focused exclusively on therapeutic horse-riding, as opposed to animal-assisted therapy more generally; and, (c) described, explicitly or implicitly, the mechanism by which therapeutic riding had a beneficial psychological effect. after exclusion of articles that did not meet these criteria, articles remained ( - ). the full text of each article was examined and data pertaining to any explicit or implicit hypotheses about the potential mechanisms by which therapeutic riding impacted on psychological functioning were extracted. text drawn from the articles was coded and categorized into thematic clusters based on the similarity of meaning. we used these categories to define the hypotheses about the mechanisms by which therapeutic riding might have beneficial psychological effects. results our analysis revealed that, at the broadest level of categorization, three competing hypotheses were apparent. each of these hypotheses is outlined in more detail below. hypothesis : the psychological benefits of therapeutic riding are unrelated to the horse and would occur in any similar program. a theme contained in the published articles was that the psychological benefits of therapeutic riding were not associated with the horse itself, but were due to some other generic aspect of an equine program that could be equally present in any other activity. for instance, researchers noted that the observed benefits of therapeutic riding may be due to the fact that the activity occurs in a “non-health care” setting ( ). alternatively, the therapeutic riding center may simply represent a place where pleasure and fun can occur, as it would in any social or recreational center. for example, favali and milton ( ) reported that one reason that individuals found benefit in therapeutic riding was because they valued the connection to nature and wildlife. thus, these researchers suggested that perhaps it is the connection to nature that facilitates the psychological benefits associated with therapeutic riding. other researchers have suggested that the psychological benefits observed following therapeutic riding may be no different to those associated with owning pets ( ), and therefore are not specific to the horse. some researchers suggested that the benefits of therapeutic riding may be due to the multi-sensory nature of the activity ( ), and to enhanced body awareness ( ). presumably, these beneficial effects could be observed with other multi-sensory activities that enhance body awareness, and are thus not specific to the horse. bass et al. ( ) also proposed that the horse may be perceived as a rewarding stimulus which may lead to increased motivation and social engagement. again, there are numerous activities that individuals may perceive as rewarding, and therefore if this is indeed the mechanism by which therapeutic riding has positive psychological effects, these benefits cannot be readily attributed to the horse itself. hypothesis : the horse itself provides a particularly positive context thereby facilitating the likelihood of psychological gains, which may derive from other sources. the second major theme contained in the assumptions that underlie many of the published articles is that the horse is a vital medium, although not a specific catalyst for the therapeutic process. specifically, it provides an emotionally positive context that can enhance the likelihood of beneficial change. for instance, the horse can provide a unique opportunity for experiences that will impact specifically on the psychological well-being of riders. although other activities, such as adventure programs ( , ) or pet therapy ( , ) might be equally able to provide aspects of this experience, this hypothesis suggests that the horse is unique in its ability to provide a total context. several researchers noted that situations likely to arise during the course of therapeutic riding provide useful material that can serve as metaphors for issues relevant to an individual’s life ( - ). therapeutic riding can also provide a context in which individuals who are reluctant to communicate can feel more comfortable to do so, even if only with the horse ( ). further, some individuals with physical disability have noted that therapeutic riding can facilitate a sense of normality given the limitations they often face due to their disability ( ). others have reported that the experience of therapeutic riding can serve as a distraction from upsetting experiences and emotions ( ), thus suggesting that therapeutic riding may provide a context that leads to positive psychological outcomes. another way in which therapeutic riding may facilitate positive psychological outcomes is by providing a space in which individuals can heal. dell et al. ( ) explored the experiences of first nation and inuit youth with therapeutic riding. based on participants’ journals, reflections, and interview data, these researchers concluded that the beneficial effects from the program were enhanced through the provision of a “culturally- relevant space” (p. ), which was facilitated by the horse. finally, therapeutic riding provides a context in which it is possible to meet and engage with other individuals with similar interests, thereby enhancing social connectedness and interpersonal relationships ( , ). hypothesis : the horse itself has specific therapeutic qualities that bring about unique psychological changes not otherwise likely to occur. there was a strong assumption within some published articles that the act of horse-riding or engaging with a horse stimulates a range of psychotherapeutic processes that could not exist without the involvement of the horse. as such, the horse could be considered a catalyst that brings about unique therapeutic changes. according to this hypothesis, several therapeutic processes could be initiated by a horse, including trust, control and mastery, emotional expression and sensory integration, each of which is thought to lead to psychological benefits. for instance, the emotional connection and sense of trust that can be fostered through the relationship with a horse was thought to be significant. the horse is predictable over time, relatively undemanding in its relationships, does not make judgments, and places no conditions on its affection ( , - ). horses have a delicate form of communication that is sensitive to the non-verbal messages of humans and animals in its vicinity. however, they are not subject to the socio-cultural norms and taboos that influence the way in which people respond to each other. this unique combination provides a safe environment in which people, especially those with disabilities, can build trust. in addition to trust, the act of horse-riding was thought to foster a sense of autonomy, self-efficacy, confidence, problem solving skills, leadership, freedom, choice, and control ( , , , - , - ). indeed, the level of mastery and control that accompanies horse-riding is probably unmatched by any other activity. for instance, despite its size, a well-trained horse will allow a rider to have complete control and make choices about direction and speed. for the first time, many riders have a freedom of movement, control and assertion they have not experienced. riding also encourages people to face and overcome their fears ( ) by enabling them to accept and master a significantly “risky” activity that is relatively uncommon in the general population, but in a controlled environment. the horse is a potentially frightening animal with a strength, speed and size that would overwhelm most people. however, therapeutic horses are selected and trained for their gentleness, predictability and good behavior, thus eliminating “actual” risk and allowing success while maintaining the perception of risk and challenge. therapeutic riding was also thought to stimulate communication between the horse and individual, and facilitate the use of non-verbal language and emotional expression ( - , , , - ). the horse relies totally on its well-developed system of non-verbal communication and responds positively to the non-verbal communication of its riders. indeed, the horse necessitates a reliance on non-verbal expression, thus giving riders a means of expressing themselves, particularly those who do not have language skills or are restricted in their non-verbal expression by the norms and demands of society. unlike many other activities, horse-riding requires the use of all the senses. horse-riding was thought to stimulate a vast range of actions and abilities -- physical and cognitive skills, non-verbal expression, the use of appropriate voice commands, a range of tactile stimuli including warmth, hardness and softness, overwhelming smells, constant noise and rhythm, appealing and varied sights, and social contact ( , , , ). the integration of these diverse modalities was thought to result in an awareness of self and environment that would not otherwise be gained. in comparison to horse-riding, traditional interventions tend to focus on separate aspects of the person (i.e., the body, the emotions, living skills etc.). even when riding was not involved, the unique act of grooming a horse was thought to contribute to a variety of positive therapeutic outcomes. specifically, caring for a horse, and caressing a horse (and having the horse respond to this affection) was believed to facilitate improved quality of intimacy; one which some people may not have previously experienced ( , , ). researchers also described a sense of “giving back to the horses” through the act of grooming, creating an intimacy with the horse that was thought to facilitate the development of empathy ( , p. ). conclusions given the cost of maintaining a therapeutic riding program ( ), it is imperative that researchers examine the three hypotheses that have emerged from this study to determine the mechanisms by which these programs influence psychological outcomes. if the benefits of therapeutic riding are associated with some generic aspect of the program, rather than the horse-related activity, outcomes cannot be attributed to the horse. in this case, similar benefits could be achieved through a more cost-effective manner. thus, there is little rationale for continued support of therapeutic riding programs. one aspect of any intervention that impacts on cost-effectiveness is its duration relative to its sustainability. some early anecdotal and observational evidence suggest that therapeutic riding can have positive psychological benefits within a relatively short timeframe ( , , , ). further, the psychological gains that arise from therapeutic riding are thought to be durable ( ). nevertheless, if similar outcomes can be achieved through a more cost effective medium, then the added cost of running an equine program may not be justified. the second hypothesis, that the horse is beneficial because it creates a positive context, is plausible and is not inherently contradictory to the value of therapeutic horse riding. naturally, the extent to which this hypothesis can account for the beneficial psychological impact of horse riding will depend on individual riders and their preferences. however, there is some evidence to suggest that horses may be a universally enjoyable animal and that most people would find horse-riding to be an exciting and pleasurable activity ( ). it is not surprising, therefore, that horse-related activities can stimulate a high degree of motivation in vulnerable populations ( , ). this motivation can easily be used to facilitate learning or alter behavior. some researchers have concluded that in addition to the motivation generated by horses, therapeutic processes such as participation and integration are inherent in the horse-related encounters ( ). for instance, therapeutic riding centers usually offer the opportunity for riders to mix with a range of other riders and volunteers, all of whom share a passion for horses. in this context, the horse becomes a facilitator of inclusion and communication. horses become a topic for spontaneous conversation, allowing people to express themselves to an interested audience without fear of rejection. horsemanship necessitates constant interaction between a team of people and a horse. to safely participate in horse-related activities, the team must communicate both verbally and non-verbally at all times. indeed, it has been suggested that the horse can build a “bridge” between riders, volunteer helpers and the coach or therapist ( , ). if, however, horses offer a unique therapeutic process, as described in the third hypothesis, then a great deal more planning and clinical thought must go into these programs in future. although there is no evidence to confirm this hypothesis, it is highly plausible that the simple, unconditional and trusting relationship that develops between a rider and his or her horse may, under certain circumstances, generalize to other interpersonal relationships ( , ). indeed, a number of researchers have used horses to directly address therapeutic goals or develop life skills. for instance, strausfeld ( ) reported reduced levels of fear among people with drug addictions once they had mastered their fear of horses. other researchers have shown how therapeutic riding programs have facilitated the likelihood of safe “risk-taking” behaviors in other areas ( ). in accounting for the possibility that the horse is a therapeutic tool, jacquelin ( ) described how it is not threatening and is likely to respond to emotional expression in a consistent rather than unpredictable manner. thus, people are unlikely to feel embarrassed when interacting with their horse and are, thus, able to express their own emotions freely without fear of rejection. over a decade ago, at the th international congress on therapeutic riding, the focus was solely on issues of whether or not the horse was the primary mechanism of change. at this conference, the founder of l’arche communities, dr. jean vanier ( ), commented that the emotional pain experienced by those who are most vulnerable in society is enormous. they have spent a lifetime being rejected, restricted, and prevented from achieving their goals. he noted that the path to healing involved the rediscovery of their value and self-confidence and the development of true friendships. to allow healing to occur, vanier argued that we must abandon the concept of power and welcome difference into our world as a treasure rather than a threat. he concluded that horses, with their unconditional acceptance and tolerance, offered an invaluable path to mental recovery, yet were rarely used in a therapeutic way. however, if we are to fully understand the therapeutic value of the horse, we must examine the efficacy of horse- riding more robustly and determine the actual mechanisms by which it has its psychological impact, if any. irrespective of whether qualitative or quantitative methods are used, the challenge for researchers in this area is to design studies that can examine the hypotheses identified in this study and, hopefully, build an evidence-base on which to improve the potential application of this therapeutic technique. references . masini a. equine-assisted psychotherapy in clinical practice. journal of psychosocial nursing ; : - . doi: . / - - . nahra. national association for horse riding. usa: nahra; . . lessick m, shinaver r, post km, rivera je, lemon b. horseback riding: exploring this alternative therapy for women with disabilities. awhonn lifelines ; : - . doi: . / . benda w, mcgibborn nh, grant k. improvements in muscle symmetry in children with cerebral palsy after equine-assisted therapy (hippotherapy). journal 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. . williams c. equine-facilitated psychotherapy benefits students and children. holistic nursing practice ; : - . . strausfeld p. therapeutic riding as a special clinic for drug-addicted women. the federation of riding for the disabled th international congress ; . . riffkin j. risk-taking amongst rda coaches: a proposed study. scientific and educational journal of therapeutic riding : - . jacquelin t. therapy with the horse for sexually abused children. the federation of riding for the disabled th international congress ; . . vanier j. the place of people with disabilities in our societies. the federation of riding for the disabled th international congress ; . campbell systematic reviews © the authors. campbell systematic reviews published by john wiley & sons ltd on behalf of the campbell collaboration campbell systematic reviews. ; :e . wileyonlinelibrary.com/journal/cl | of https://doi.org/ . /cl . doi: . /cl . s y s t e m a t i c r e v i e w the impact of care farms on quality of life, depression and anxiety among different population groups: a systematic review jenni murray | nyantara wickramasekera | marjolein elings | rachel bragg | cathy brennan | zoe richardson | judy wright | marina g. llorente | janet cade | darren shickle | sandy tubeuf | helen elsey academic unit of public health, leeds institute of health sciences, university of leeds, leeds, uk plant research international, wageningen university, wageningen, the netherlands care farming uk, bedminster, uk york trials unit, department of health sciences, faculty of science, university of york, york, uk leeds institute of health sciences, the university of leeds, leeds, uk madrid institute for rural, agricultural and food research and development (imidra), social‐ecological systems lab, ecology department, universidad autónoma de madrid (spain), madrid, spain university of leeds, leeds, uk correspondence helen elsey, department of health sciences, university of york, atb (area ), seebohm rowntree building, yo dd, uk. email: helen.elsey@york.ac.uk abstract care farming (also called social farming) is the therapeutic use of agricultural and farming practices. service users and communities supported through care farming include people with learning disabilities, mental and physical health problems, substance misuse, adult offenders, disaffected youth, socially isolated older people and the long term unemployed. care farming is growing in popularity, especially around europe. this review aimed to understand the impact of care farming on quality of life, depression and anxiety, on a range of service user groups. it also aimed to explore and explain the way in which care farming might work for different groups. by reviewing interview studies we found that people valued, among other things, being in contact with each other, and feeling a sense of achievement, fulfilment and belonging. some groups seemed to appreciate different things indicating that different groups may benefit in different ways but, it is unclear if this is due to a difference in the types of activities or the way in which people take different things from the same activity. we found no evidence that care farms improved people’s quality of life and some evidence that they might improve depression and anxiety. larger studies involving single service user groups and fully validated outcome measures are needed to prove more conclusive evidence about the benefits of care farming. | plain language summary . | more evidence needed on the effectiveness of care farms (cfs) care farming is the therapeutic use of agricultural and farming practices. people value the farms, but the evidence on their effectiveness is limited. . | what is this review about? care farming (also called social farming) is the therapeutic use of agricultural and farming practices. service users and communities supported through care farming include people with learning disabilities, mental and physical health problems, substance misuse, adult offenders, disaffected youth, socially isolated older people and the long‐term unemployed. - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - this is an open access article under the terms of the creative commons attribution license, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. [correction added on dec , after first online publication: under section . , text box is modified]. mailto:helen.elsey@york.ac.uk this review aims to understand the impact of care farming on quality of life, depression and anxiety, on a range of service user groups. it also aims to explore and explain the way in which care farming might work for different groups. what is the aim of this review? this campbell systematic review examines the impact of care farming on quality of life, depression and anxiety, on a range of service user groups. it also aims to explore and explain the way in which care farming might work for different groups. . | what studies are included? the review included randomised controlled trials (rcts) and quasi‐ rcts; interrupted time series and nonrandomised controlled observational studies; uncontrolled before and after studies and qualitative studies. study participants were those who typically receive support at a cf. studies conducted in a setting that met the accepted definition of a cf were included, but farming interventions that were carried out in a hospital or prison setting were excluded. the total number of included studies in this review are qualitative studies and quantitative studies, one of which was a mixed‐methods study. . | what are the findings of this review? the qualitative interview studies showed that people valued, among other things, being in contact with each other, and feeling a sense of achievement, fulfilment, and belonging. some groups seemed to appreciate different things, indicating that different groups may benefit in different ways but, it is unclear if this is due to a difference in the types of activities or the way in which people value different things from the same activity. there is a lack of quantitative evidence that cfs improve people’s quality of life, but some evidence that they might improve depression and anxiety. larger studies involving single service user groups and fully validated outcome measures are needed to prove more conclusive evidence about the benefits of care farming. . | what do the findings of the review mean? there is a lack of evidence to determine whether or not care farming is effective in improving quality of life, depression and anxiety. more evidence is available for those with mental ill‐health, but firm conclusions cannot be drawn. despite the current lack of robust evidence to support the effectiveness of care farming, there are strong arguments to support a more integrated approach to care farming as a viable alternative or adjunct to mainstream approaches for mental health problems. lack of choice, gender inequalities, and over‐ burdened statutory services indicate the need for a credible alternative treatment option. there needs to be a concerted effort to increase awareness among commissioners of health care, frontline service providers and potential service users about care farming, how—and for whom—it might work. models across europe that offer a more integrated approach between green care and statutory services could provide valuable learning. the evidence for care farming for other service user groups is not as well developed as it is for those with mental health problems, but that is not to say there is not a need. disaffected youth, adult offenders and people with dementia represent significantly large vulnerable population groups where current service provision struggles to meet demand. the need to continue to improve and provide high quality research in these areas is therefore pressing. . | how up‐to‐date is this review? the review authors searched for studies published up to july . | executive summary . | background care farming (also called social farming) is the therapeutic use of agricultural and farming practices. service users and communities supported through care farming include people with learning disabilities, people with mental and physical health problems, people with substance misuse problems, adult offenders, disaffected youth, socially isolated older people and the long‐term unemployed. care farming is a highly complex intervention that can involve different farming activities (horticulture, forestry or livestock farming) or other activities (gardening, conservation or woodwork), with differ- ent levels of support provided according to the needs of the individual service users. likewise the service users can contribute to farming production or the farm itself may focus on the provision of care services. care farming sits within a broader framework of similar nature based supportive interventions collectively terms green care that also includes wilderness therapy, social and therapeutic horticulture, environmental conservation and green exercise. there are around , cfs in the netherlands, in france, in italy and in belgium. in the uk and ireland (both the republic and the north) numbers are fewer with around and , respectively. with increasing pressure on the health and social care sector, commissioners are turning to green care interventions as an alternative approach. although a number of overviews and one systematic review of care farming exists there is a need for a review that captures the full range of published and grey literature, and to explore in depth the mechanisms that explain how care farming works for different service user groups. of | murray et al. . | objectives the primary objective was to systematically review the available evidence of the effects of cfs on quality of life, health and social well‐being on service users. within this, we aimed to explore the size of the effect that cfs have on the health, well‐being and social outcomes of different population groups. with available material we also aimed to explore the relationship between contextual data (the activities and characteristics of the farm and the nature of the service user groups) and the impact on outcomes. finally, we aimed to understand the mechanisms of change for different population groups with a view to constructing a logic model to describe the ways in which care farming might work. . | search methods in , we searched health, education, environmental, criminal justice and social science electronic databases. we also searched databases of grey literature, and various websites, including care farming websites across a number of european countries. reference lists of included studies and identified systematic reviews were scanned, and citations of key papers were tracked using google scholar and web of science citation indices. this was supplemented by hand searching the wageningen journal of life sciences from onwards and by contacting academic and care farming networks to identify any other reports. our search terms were deliberately broad to capture all rehabilitative interventions occur- ring on farm and farm type settings. the search of electronic databases as repeated in , due to limited resources the grey literature search was not repeated in . . | selection criteria we included a broad range of study designs: rcts and quasi‐rcts; interrupted time series and nonrandomised controlled observational studies; uncontrolled before and after studies and qualitative studies. we excluded single subject designs, reviews, overviews, surveys, commentaries and editorials. study participants were those that typically receive support at a cf, including but not restricted to people with mental health problems, learning difficulties, health problems, substance misuse problems, and offenders and disaffected youth. only those attending for a single day as a visitor were excluded. studies conducted in a setting that met the accepted definition of a cf were included, but farming interventions that were carried out in a hospital or prison setting were excluded. for the purposes of developing the logic model, we retained papers that described any theories to explain how and for whom care farming might work. these papers are not formally included in the review. . | data collection and analysis each screening stage involved two independent reviewers. studies that were potentially eligible after title and abstract screening underwent full paper screening. disagreements were discussed and resolved by consensus at each stage. papers describing theories in relation to care farming were separately retained even if they did not meet the inclusion criteria for the purposes of constructing a theoretical framework to inform the logic models. the preferred reporting items for systematic reviews and meta‐analysis (prisma) was used to state the process of study selection. we stored all references in endnote (vx ) and recorded extracted data and the outcomes of full paper screening in eppi‐reviewer (v. . . . ). the data extraction form was based on the cphg data extraction and assessment template with subsections for contextual information, and qualitative and quantitative data. we used a sequential explora- tory approach to the review involving four stages: (a) developing a theoretical framework; (b) identifying the intervention compo- nents, mechanisms of change, and proximal outcomes from existing theories and qualitative data; (c) mapping the mechan- isms of change and proximal outcomes to the theories to develop the logic models and (d) testing the logic models against the quantitative data. we used an adapted version of the coreq tool to assess the quality of the qualitative studies, and the epoc and ephpp tools to assess the risk of bias in quantitative studies. no studies were excluded based on quality. the nature of the studies meant that we were unable to assess treatment effect and reporting biases. . | results in , our search methods identified , articles, of which qualitative studies, quantitative studies and one mixed methods study met the inclusion criteria. in addition, we identified theories that had been quoted in connection with care farming. the rerun of the search of publish literature in july identified a further articles, of which three qualitative studies met the inclusion criteria. the total studies in this review are qualitative studies and quantitative studies, one of which was a mixed‐methods study. we created four logical models to explain how care farming might work: an overall one for all service user groups; one for people with either mental health problems or substance misuse problems, one for dis- affected youth and one for people with learning disabilities. these models comprised five key theoretical concepts derived from identified theories (restorative effects of nature, being socially connected, personal growth, physical well‐being and mental well‐being), five categories of intervention components (being in a group, the farmer, the work, the animals and the setting) and categories of mechanisms derived from included qualitative studies (achievement and satisfaction, belonging and nonjudgement, creating a new identity, distraction, feeling valued and respected, feeling safe, learning skills, meaningfulness, nurturing, physical well‐being, reflection, social relationships, stimulation, structure, and understanding the self). in addition, from the theories and qualitative studies, we identified murray et al. | of different outcomes, both proximal (secondary) and primary, that we expected to find when testing the logic models against the quantitative studies. one key theoretical concept “restorative effects of nature” was underrepresented in the intervention components and mechanisms reported within the qualitative studies. the types of mechanisms appeared to differ according to different service user groups, suggesting that care farming may work in different ways according to different needs. across the quantitative studies (including the mixed methods study), different outcome measures were reported. eight studies (both qualitative and quantitative) reported results for mixed client groups. only the logic model for mental illness and substance misuse was tested, due to a lack of quantitative evaluations for the other service user groups. we found a lack of evidence to indicate that cfs improve quality of life, and limited evidence that they might improve depression and anxiety. there was some evidence to suggest that cfs can improve self‐efficacy, self‐ esteem and mood, with inconsistent evidence of benefit for social outcomes. all of the studies had a high risk of bias so the results should be treated with caution. . | authors’ conclusions there is a lack of evidence available to determine whether or not care farming is effective in improving quality of life, depression and anxiety. more evidence is available for those with mental ill‐ health, but firm conclusions cannot be drawn. small study sizes of poor design, evaluations involving mixed service user groups, the use of multiple and sometimes unvalidated outcome measures, short follow‐ups, and the absence of key outcomes that fit with theory have all hampered the development of a more robust evidence base. however, we now have a set of theory‐based logic models that offer a framework for research evaluations. with recommendations in place to address the current research inadequacies there is an opportunity to vastly improve the evidence base for care farming. despite the current lack of robust evidence to support the effectiveness of care farming, there are strong arguments to support a more integrated approach to care farming as a viable alternative or adjunct to mainstream approaches for mental health problems. lack of choice, gender inequalities and over‐ burdened statutory services indicate the need for a credible alternative treatment option. a concerted effort to increase awareness among commissioners of health care, frontline service providers, and potential service users about care farming, how, and for whom, it might work is needed. models across europe that offer a more integrated approach between green care and statutory services could provide valuable learning. the evidence for care farming for other service user groups is not as well developed as it is for those with mental health problems, but that is not to say there is not a need. disaffected youth, adult offenders and people with dementia represent significantly large vulnerable population groups where current service provisions struggles to meet demand. the need to continue to improve and provide high quality research in these areas is, therefore, pressing. | background . | the problem, condition or issue supporting individuals whose vulnerabilities put them at greater risk of poorer quality of life is a cornerstone of many charitable/third sector organisations. often the support needed goes beyond that which can be provided by statutory health and social care organisations. this is partly a capacity issue relating to increasing life expectancies over the th century (christensen, doblhammer, rau, & vaupel, ) and increasing prevalence of long‐term conditions. however, it also relates to changing needs and demands of populations within modern societies. many of the problems presenting to health service providers are complex and are often underpinned or exacerbated by social problems such as poor education, poor housing, unemployment and social isolation, and the skills within health services to address these issues do not exist within this sector (citizen’s advice, ; popay, kowarzik, mal- linson, mackian, & barker, ). thus, for many such individuals inadequate support can lead to poorer quality of life, and for society as a whole, greater health inequalities (marmot et al., ). learning disabilities is an umbrella term for a range of conditions, including down’s syndrome, fragile x syndrome and cerebral palsy. autism spectrum disorder (asd) can also be included here, but not all people with asd have a learning disability. people with learning disabilities often experience poorer health and higher mortality due to increased social and health inequalities and underlying pre‐ existing conditions (krahn, hammond, & turner, ). although many people with learning difficulties could reach more personal autonomy through the labour market, rates of employment are very low and social isolation is common (www.mencap.org.uk). further, some conditions are associated with varying degrees of challenging behaviours so placement for some individuals can be difficult. day care is available for people with learning disabilities, but ensuring that people are given a sense of purpose alongside social interaction in a place without judgement can be a challenge. mental illnesses, including, for example, depression, anxiety, personality disorders, schizophrenia and posttraumatic stress dis- orders are a leading cause of disability in the occidental cultures (murray et al., ). in some countries, such as the uk, the prevalence of major depression is increasing and imposing huge personal and economic costs (centre for mental health, ). likewise in spain, although indicators of physical health have constantly improved during the last three decades, indicators of healthy habits (rates of cholesterol, diabetes, hypertension, allergies learning disabilities is an umbrella term for a range of conditions including down’s syndrome, fragile x syndrome and cerebral palsy. asd can also be included here, but not all those with asd have a learning disability. of | murray et al. http://www.mencap.org.uk and obesity) and mental health (such as the number of suicides and the number of psychological treatments) have worsened (spanish national ecosystem assessment, ). as an early treatment, approximately % of depressed patients in uk primary care are prescribed antidepressant medication (kendrick, stuart, newell, geraghty, & moore, ); however, adherence may be as low as one third (bull et al., ). an alternative or adjunct to antidepressants is talking therapies. there are long waiting lists, and of those that complete the course around two thirds show signs of improvement and % recover (department of health, ). but for the many that do not take up the offer of talking therapies or who do not benefit from it, there are few alternatives. social problems can also underpin many anxiety and depressive disorders. a more practical approach that directly targets these underpinning causes may be a more effective approach and an efficient use of resources. providing a safe calm environment that is nonconfrontational and offers structure and space for people to channel their energies into tasks that are mentally relaxing could provide a good fit for those who are unable to benefit from more conventional services. disengaged or disaffected children, defined as those who are not fully taking part in school life as they have given up trying or are resisting help (lumby, ), are at high risk of exclusion from school. exclusion from school can predispose young people to becoming a “neet” (a person between the age of and and not in education, employment or training), which in turns carries an increased likelihood of committing a criminal offence, being in a lower paid job and subsequently a poorer quality of adult life compared to those who complete their education (audit commission, ; public health england, ). evidence suggests that the numbers of children that fit within the disengaged category are increasing (mcewan et al., ; robins, cohen, slomkowski, & robins, ), and a large proportion of youth who show problem behaviour at a young age go on to develop antisocial personality disorders as an adult (rutter et al., ) or can experience social exclusion (hassiotis & hall, ). furthermore, there is also an increased risk of developing psychoactive substance use disorders, bipolar disorder and long‐term smoking addictions (biederman et al., ). strategies to support children and young people in this situation are in place across a number of developed countries. for example, in the uk schools can refer pupils at risk of exclusion directly to off‐site educational provisions. these can include local cfs which are contractually obliged to support teenagers to achieve national open college network accreditation. importantly, class- room‐based education is integrated with practical outdoor activities, which enables better student engagement. offenders often have mental and physical health problems (brooker, syson‐nibbs, barrett, & fox, ) or drug addiction and substance misuse problems (abracen, looman, & anderson, ), and are more likely to have suffered from socioeconomic deprivation (farrington, ), to have witnessed domestic violence (caputo, frick, & brodsky, ), to have a family history of criminal violence (farrington & west, ) or to have experienced harsh or neglectful parenting (sutton, utting, & farrington, ). poor education and a lack of skills predisposes individuals to unemployment, which itself is a risk factor for offending (farrall, ). some cfs aim to support offenders by developing self‐esteem and providing work‐based skills that provide hope for the future. being able to be physically active in nature may help to improve both the physical and mental well‐being of older people (elings, haubenhofer, hassink, rietberg, & michon, ). levels of depres- sion and anxiety are often higher among these groups than the general populations (pedersen et al., ), and findings suggest that depression can cause worse health outcomes in older people when combined with chronic conditions such as arthritis, asthma or diabetes (moussavi et al., ). . | the intervention . . | defining care farming care farming (also called social farming) has been formally defined as the use of commercial and noncommercial farms and agricultural landscapes as a base for promoting mental and physical health, through normal farming activity (hassink, ; hassink & van dijk, ; hine, peacock, & pretty, a). a cf utilises the whole or part of a farm to provide health, social or educational care services, employment skills and support for different groups of people, through the provision of a supervised, structured programme of farming‐related activities, rather than occasional one‐off visits (care farming uk, ; di iacovo & o’connor, ). care farming is a truly complex intervention. it may occupy part of a farm where farming production is the primary function (i.e., commercial agricultural units), or where the main function is provision of care services (i.e., community farms). farms also differ in the types of farming activities undertaken (e.g., horticulture, forestry and livestock farming), other activities available (e.g., gardening, composting organic waste, medicinal plants work, conservation and woodwork), the level of support provided (e.g., health promotion, counselling, rehabilitation and skills qualifications) and the range of service user groups treated. given this complexity, the main defining feature of a cf is the involvement in agrarian or forestry activities for a therapeutic purpose. it is also important to highlight the farming component of the intervention, as this helps to distinguish care farms from horticultural or animal‐based therapy projects. care farms can function as a social enterprise where income gained by agricul- tural production is used to finance the cf (elings et al., ). • a diverse range of activities can be offered to service users at a care farm. tasks selected are primarily determined by the particular needs and capabilities of the user and the type of farm and activities available. the range of cf types varies both between and within countries across europe. to demonstrate the variety of care farms in the uk, the netherlands and spain, some examples are provided below and further details can be found from the following websites: care farming uk (https://www.carefarminguk.org/) and from european social farming sites: http://www.maie‐project.eu/index. murray et al. | of https://www.carefarminguk.org/ http://www.maie-project.eu/index.php?id= php?id= ; http://www.socialfarmingacrossborders.org/seupb; http: //www.egina.eu/. in madrid, a city farm with an urban orchard offers occupational activities and training for employment to people with learning disabilities. among other activities they do horticultural work and raise livestock. the farm includes a one hectare urban orchard divided into smaller areas that are rented to the general public. people with learning disabilities help clients to take care of their orchards and provide them with advice and support to keep orchards in a good condition. in addition, they attend school. • in a farm in the north west of england the service users are primarily those with mental health problems, and activities are focused on horticultural production, but with some site main- tenance. the service users also cook meals for themselves on site, often using produce that they have grown onsite. service users are given work that increases in intensity as they recover. working within a therapeutic community is the essence of the farm. • in the midlands, a farm supports offenders who are unem- ployed and have social problems. the farm provides a range of activities including growing vegetables, harvesting and retail- ing produce, and working with the farmer to manage a large herd of beef cattle. since an aim is to improve employability, offenders are awarded a nationally recognised qualification on completion of their time at the farm. because offenders work with the same group throughout their time at the farm, they have the opportunity to develop friendships. • a city farm based in london runs a project on site which aims to reduce social isolation for older people living in residential homes and those using the services of older people’s organisations. they specifically offer animal handling, which not only gives individuals an opportunity to touch and care, but also creates an avenue for open conversations to encourage social engagement. • in the southern part of the netherlands, a farmer and his wife (who works in health care) run a small scale cf with cows and arable produce. the farmer’s wife provides day activities for people with learning difficulties and mental health problems. on average, eight service users access the farm each day, working together on different activities. they have coffee and lunchbreaks together with the family. some of the service users work in the farm shop. in addition to engaging in different activities, a small number of care farms offer service users the opportunity to interact with other professional caregivers to receive counselling or support to develop a healthier lifestyle. a recent survey of care farms in england found that, on average, participants attended a cf each week. the length and duration of the cf intervention is determined by the need of the client, and this varies from one to three times a week, on average over a period of weeks (bragg, egginton‐metters, elsey, & wood, ). in addition, the intervention can vary depending on the wider cultural context in which the farm resides. for example, in the netherlands, an agriculturally productive farm will offer some form of care or health promotion to their service users, whereas in germany, care farms are frequently connected to a healthcare institution rather than being solely based on agricultural production farm (haubenhofer, elings, hassink, & hine, ). german care farms often function on a large scale, as government subsidies are only provided to farms with more than service users (haubenhofer, blom‐zandstra, kattenbroek, & brandenburg, ). the service users that utilise care farms also differ according to the setting of the intervention, for example, in norway, the service users tend to be young children and psychiatric patients, whereas in the united kingdom, belgium, the netherlands and italy, a variety of different people use the intervention (haubenhofer et al., ). individuals and communities supported through care farming include those with learning difficulties, asd or mental health problems, plus disaffected youth, people with physical disabil- ities, older people, people with drug and alcohol problems, adult offenders, people with dementia, and exservice personnel (bragg et al., ). in the uk, the largest service user groups are those with learning difficulties, asd, mental health problems and disaffected youth. a similar pattern of intake is seen in the netherlands, the country with the greatest number of care farms. in developing countries and areas experiencing greater rural poverty, care farming is also now being used to support the long‐ term unemployed and empower women to become economically active (food and agriculture organization, ). care farms can also provide support for offenders referred from probation services either as a rehabilitative intervention or as a way of “paying‐back” to the community for crimes committed (elsey et al., ). elderly people, including those with dementia, are a more recent group to use care farming (elings et al., ). care farms can offer an alternative to day centres by providing a home from home environment that can involve some outdoor work for mental stimulation and physical activity. the number of care farms has been growing, particularly in europe, with an estimated , care farms now in the nether- lands (elings et al., ), and around in the uk (bragg & atkins, ), in france, in belgium (steunpunt groene zorg, ), in germany, in italy, in ireland (di lacovo & o’connor, ) and around in catalonia in spain (guirado‐gonzález et al., ). . . | care farming within the broader literature the ways in which individuals interact with nature can be viewed as a continuum with overlapping categories, ranging from general every- day contact such as viewing, working or undertaking recreational activities, through to using nature deliberately as a therapeutic or treatment resource (i.e., green care) involving activities like wild- erness therapy, social and therapeutic horticulture, animal‐assisted therapy and care (social) farming (see figure ). green care has been defined as follows: green care utilises plants, animals and landscapes to create interventions to improve health and well‐being; (i.e., it does not represent a casual encounter with nature). it also provides care and support to enable people to reach their true potential, that is, although many of the of | murray et al. http://www.maie-project.eu/index.php?id= http://www.socialfarmingacrossborders.org/seupb http://www.egina.eu/ http://www.egina.eu/ approaches are termed “therapies” or “therapeutic”, they are not necessarily directed at treating or curing conditions and diseases but, as in the case of people with learning difficulties, for example, they provide care, support, training and other opportunities to enable those individuals to develop. such opportunities are often not available elsewhere (sempik & bragg, ). care farming is a distinct category within green care as the focus is on the use of a farm, either a commercial farms or other agricultural landscapes as a base for promoting mental and physical health, through normal farming activity (hassink, ; hassink, zwartbol, agricola, elings, & thissen, ; hine, ). activities are not designed as “therapy” as they might be within a horticultural therapy or animal‐ assisted therapy, rather they are the jobs that would need to be done on a farm to ensure successful production. furthermore, care farms provide a range of farming activities that users can engage with. this provides a clear distinction with therapeutic horticultural activities and animal‐ assisted interventions (aai) which focus on a single activity such as gardening or horse riding. . | how the intervention might work as a highly complex intervention comprising multiple activities and involving many client groups with differing needs, it is likely that multiple mechanisms and interactions will be at work to bring about changes in individuals. at the core of the intervention is the contact with nature which has value in its own right, but also provides the platform for the range of activities. studies have shown that contact with nature has a positive effect on people’s mental, physical, and psychological well‐being, and spiritual beliefs (bragg, ; sempik, hine, & wilcox, ) and that engaging in nature based activities such as farming or gardening enables people to find solace (sempik et al., ). as a result, care farms may be beneficial for a wide range of service users. a number of theories have been mentioned within the care farming literature and some of these speak specifically to the nature element such as attention restoration theory (kaplan & kaplan, ) and biophilia hypothesis (wilson, ). other theories relate specifically to the client groups that attend care farms, for example, desistence theory for offenders (mcneill & weaver, ) and the recovery model for people with mental health problems (anthony, ). within these theories, mechanisms are proposed to explain how any effective intervention would be expected to bring about change. identifying these mechanisms within the care farming interventions will indicate its fit with the theory, and therefore its likely effectiveness. for example, desistence theory suggests that interventions that lead to a reduction in recidivism involve building figure the different contexts in which an individual may engage with nature. source: (bragg & atkins, ). the three columns represent the different contexts in which an individual may engage with nature. on the left, the “everyday life” column highlights various situations in which an individual engages with nature as part of their normal lifestyle. the middle column “health promotion” outlines a variety of existing group projects and initiatives which aim specifically to encourage individuals, communities and disadvantaged groups to benefit from nature‐based activities. funding is usually for the project as a whole and may come from public health, local authority grants or from the voluntary or private sector. on the right, the “green care” column represents the various nature‐based interventions which have been specifically commissioned for an individual with a defined health or social need as part of their care or treatment package murray et al. | of human relationships, opportunities for reflection and change (farrall & bowling, ; weaver & mcneill, ), developing self‐efficacy (maruna, ; mcculloch, ; mcneill, ) and social capital by learning and applying new skills to develop a new more positive identity (farrall, ; giordano, cernkovich, & rudolph, ; laub & samson, ; maruna, ; mcneill & maruna, ). a sense of community and the development of friendships are indeed valued aspects of a cf (hassink, ). furthermore, farmers are perceived as a role model with a strong sense of identity, thus offering an essential role model that can be emulated within a new identity (hassink, de meyer, van der sman, & veerman, ). both the concepts of building human relationships and creating a new identity are clearly present within care farming interventions. . | why it is important to do the review with increasing pressures on the health and social care sector, commissioners and policy makers are turning to care farms as a potentially effective intervention. farmers across europe are becoming more multifunctional in how they use their land, and care farming may be an increasingly attractive option. as such, there is great potential to increase the use of care farms as an intervention to bring beneficial outcomes to a range of different population groups. the growth in care farming in recent years is partly attributable to their commissioning successes with a range of health and social sector organisations through patient‐referral and contracts for provision of support to health, social‐care and probation clients. their sustainability is important given the increasing reliance that health and social care place on them. however, they remain heavily dependent on charitable funding, and policy changes over recent years have detrimentally impacted income streams. care farming is one of many third sector health interventions that are competing for similar funding streams. its strength is its clear capacity to deliver care to a wide range of service users. their ethos fits well with a number of theories relating to, for example, mental health recovery and rehabilitation of offenders. as is common for many interventions delivered by the third sector, the evidence base for their effectiveness is not well developed. this undermines the ability of the sector to move beyond being peripheral support organisations with limited core funding. in the past, the need to provide evidence was the domain of the pharmaceutical industry, but in recent decades this has expanded to cover complex health service evaluations. the methodologies for the latter are transferable to the third sector, but a lack of infrastructure and sustained income has hindered the development of a robust evidence base here. additionally, the complexities and multifaceted nature of care farms means that this is not an intervention that lends itself easily to a randomised controlled study design. nonetheless, there are a number of studies of care farms published in a wide range of journals across europe. although one systematic review and a small number of overviews exist (bragg & atkins, ; elings, b; iancu et al., ), which document the extent and range of care farming initiatives and summarise the evidence for benefits, there is the need for a systematic review to capture the full range of both published and grey literature and to explore in depth the mechanisms that explain how care farms work for different client groups. garnering this knowledge will help to clarify for policy makers and commissioners the unique contribution that care farming can make to health and social outcomes. there is the potential for care farming to improve the health and well‐being of different population groups, and this is an important public health goal. if successful, they may have a role to play in reducing inequalities. improving the lives of the most disadvantaged can have far‐reaching societal benefits, for example, through enhancing social cohesion, reducing use of health and social care service usage and reducing crime (wilkinson & pickett, ). this review aims to synthesise the existing evidence on how and for whom, care farming works, in order to improve health and well‐ being for a wide range of service users. this systematic review is part of a feasibility and pilot study, funded by the national institute of health research’s public health research programme. | objectives the primary objective is to systematically review the available evidence of the effects of care farms on quality of life, health and social well‐being on service users. where possible we will synthesise the evidence in order: . to understand the size of the effect that care farms may have on the health, well‐being or social outcomes of different population groups . to examine whether effects differ depending on the activities and characteristics of the farm/farmer, the duration of time partici- pants spend at the farm, the number and diversity of the participants on the farm, and whether the farm is the only intervention . to understand the mechanisms of change for different population groups attending care farms using a range of study methodolo- gies, including qualitative studies | methods . | general approach we conducted a mixed methods synthesis using a sequential explanatory approach (pluye & hong, ) that involved the development of an intervention framework based on existing theories. these theories propose how care farming might work, and our review used qualitative and quantitative evidence to test the processes and outcomes suggested by these theories. this approach is valuable in identifying possible mechanisms of change to inform the development of a logic model for care farming. an earlier scoping of | murray et al. review of the literature indicated a dearth of rcts evaluating the effectiveness of care farms but instead highlighted a number of qualitative studies, a few small‐scale rcts and observational studies. thus a narrative approach which could synthesize the findings from a wide range of study designs was planned. . | criteria for considering studies for this review . . | types of studies the study designs considered for inclusion in the review were: • rcts with randomisation at individual or cluster level. • quasi‐rcts and cluster quasi‐rcts, where participants are allocated by some means other than randomisation (e.g., by case number, date of birth). • interrupted time series that clearly define intervention points and record at least three outcome measurement points before and after (or before and during) the intervention. • nonrandomised observational studies that are prospective and have a control group, including: ○ cohort studies, which ideally provide a reasonable timescale for effects to be detectable and attributable, and accurately record drop‐out figures/characteristics. ○ case control studies that report cases and controls from studies where comparability on relevant baseline characteristics and potential confounders can be judged, and comprehensively report confounders. ○ controlled before and after studies, where data collection must be contemporaneous and groups comparable on baseline scores. • before and after studies that do not have a control group: the findings provided useful information on the nature and context of care farms and the mechanisms that may support effectiveness. • qualitative studies: all designs of qualitative studies were considered, including phenomenology, ethnography, and grounded theory. in addition, we also included qualitative studies with different methods of analysis, such as thematic analysis discourse/conversation analysis and narrative analysis. we excluded single subject designs, reviews, overviews, surveys, commentaries and editorials. we also excluded theses with empirical data that had been subsequently published elsewhere. in addition to these study designs, we also retained papers which described any theories offering explanations for how care farms might bring about change in the various population groups under investigation. as our interest here is purely to explore the theoretical basis by which care farming might work to initially inform the logic model(s), we do not refer to these papers as “included studies” or “excluded studies”. these latter terms are for empirical data. . . | types of participants service users attending care farms of any age were included in the review. the list below presents the likely population groups: • offenders serving community orders or similar sentences in the community rather than in prison; offenders “on‐licence” (i.e., recently leaving prison to re‐enter the community) • people with substance misuse, such as drug and alcohol problems • people with mental health problems, including anxiety, depression and psychiatric disorders • young people with challenging behaviour, particularly those excluded/facing exclusion from school or those at risk of offending • people with health problems, particularly long‐term conditions, including dementia • people with learning difficulties • people receiving palliative care • socially isolated older people we excluded studies if participants were not from a vulnerable or disadvantaged population, such as school children visiting for education purposes or adults visiting as conservation volunteers. . . | types of interventions all care farms have some degree of “farming” (crops, livestock, woodland, etc.) and of “care” (including health care, social rehabilita- tion, education or training), but the balance of these elements differs from cf to care farm. we included studies where the intervention met the definition of care farming (see section . . for definition). the definition of care farming includes a number of components, each of which requires clarification to define exactly what was included and excluded in the review. these components include: (a) “providing a supervised, structured programme of farming‐ related activities”: many care farms offer contact with farm livestock or with crops and plants. studies were included in the review if a range of farming activities were delivered. we excluded studies with a single activity such as gardening or horse riding. this provides a clear distinction between the variety of social and therapeutic horticultural activities, aai and care farming. we excluded interven- tions that are purely categorised as “therapy”, whether in relation to animals or other natural elements that are not part of a working farm; examples include pet therapy and donkey/equine therapy. (b) “providing services on a regular basis for participants”: studies were included if the intervention was structured and service users attended several sessions rather than a planned “one‐off” visit. the review also excluded petting farms and farms used for “one‐off” educational activities. we excluded care farming interventions that were combined with other interventions (i.e., music therapy) as we would be unable to differentiate the effects derived from actual farm work. we also excluded farming interventions that were provided in hospital or in prisons. murray et al. | of eligible comparators included no intervention, wait‐list controls or alternative interventions. comparators were specific to the population group studied, for example, offenders serving their community order on a cf were compared to those serving their order cleaning public areas; or for those with addiction problems, another drug rehabilitation programme. . . | types of outcome measures primary outcomes care farms aim to improve a complex collection of social, educational and health outcomes for their service users. given that the possible end impact of this complex interaction will be seen in changes in quality of life and mental health, this review included quality of life, anxiety and depression as the primary outcomes. studies that did not use a validated instrument were not included in the analysis. secondary outcomes secondary outcomes varied according to the different populations, but we reported any mental health outcomes (in addition to quality of life, depression and anxiety as primary outcomes), social, physical and behavioural outcomes. although we report all relevant outcomes we do not include in the analysis any secondary outcomes that had been developed in‐house or failed to be defined. the secondary outcomes included were: • mental health outcomes: self‐efficacy, self‐esteem, stress, coping, mood, mental status, mental functioning, positive affect, rehabilita- tion and cognitive functioning, empowerment • social outcomes: social functioning/interaction, group cohesion, recidivism, employment, school exclusion • physical outcomes: functional performance, physical activity, and appetite and eating pattern • behavioural outcomes: drug use, alcohol intake and smoking . . | duration of follow‐up the review included any length of follow‐up of participants after their attendance at the care farm. studies that only collected follow‐ up data at the beginning and at the end of each day were excluded. . . | types of settings to be included, the studies need to explicitly state that activities took place on a farm that was not part of an institutional setting such as a prison or hospital. community gardens and allotments were excluded. . | search methods for identification of studies . . | electronic searches health, education, environmental, criminal justice and social science databases were searched to identify studies from a variety of disciplines. care farms are seen as both a health and a social intervention, and so are likely to be reported in the literature relating to these disciplines. the selection of databases is extensive, offering a good international coverage of journals in attempt to identify relevant studies throughout the world. further databases were added to those already identified in the protocol in order to identify studies commensurate with the range of potential outcomes and population groups. a single search strategy was used to identify both quantitative and qualitative studies. no restrictions were imposed on publication format or language in the search strategy. in november we searched the following databases: • applied social sciences index and abstracts (assia) (proquest) from • cinahl (ebsco) from • the campbell library • criminal justice abstracts (ebsco) from • conference proceedings citation index‐science (thomson reuters web of science) from • conference proceedings citation index‐social science and huma- nities (thomson reuters web of science) from • embase classic + embase (ovid) from • eric (proquest) from • francis (ebsco) from • global health (ovid) from • greenfile (ebsco) from • ovid medline(r) from • ovid medline(r) in‐process and other non‐indexed citations • national criminal justice reference service abstracts (proquest) from • psycinfo (ovid) from • sciences citation index (thomson reuters web of science) from • scopus (elsevier b.v.) from • social care online (scie) from • social sciences citation index (thomson reuters web of science) from • social services abstracts (proquest) from • sociological abstracts (proquest) from • web of science. science citation index expanded (sci‐ex- panded), social sciences citation index (ssci) from . . | searching other resources in order to further limit publication bias and improve the generalisability of results, we searched databases of grey literature (including conferences, dissertations and reports) and websites likely to contain unpublished reports of studies on care farms. in november , we searched care farming websites in english, dutch, spanish and italian to identify grey literature. resources searched: • hmic health management and information consortium + (ovid) • proquest dissertations and theses a&i + (proquest) of | murray et al. • web of science. conference proceedings citation index‐science (cpci‐s) –present (thomson reuters) • web of science. conference proceedings citation index‐social science and humanities (cpci‐ssh) –present (thomson reuters) • databases of ongoing trials such as current controlled trials (http://www.controlled‐trials.com/). • websites also searched in november : ○ european network for rural development http://enrd.ec. europa.eu/ ○ ministry of justice https://www.justice.gov.uk/ ○ care farming uk http://www.carefarminguk.org/ ○ social farming in europe http://sofar.unipi.it/index_file/ socialfarfming.htm ○ http://www.umb.no/greencare ○ http://library.wur.nl/frontis/farming_for_health ○ http://www.greenchimneys.org ○ https://www.novapublishers.com/catalog/product_info.php? products_id= ○ http://www.regjeringen.no/nb/dep/lmd/dok/rapporter‐og‐ planer/rapporter/ /green‐care‐in‐the‐nordic‐countries‐‐a‐ re.html?id= (nordic report) ○ http://www.matmerk.no/inn‐pa‐tunet (norwegian website for green care) in addition to electronic and unpublished literature searches, we identified further relevant studies by examining the reference lists of included studies and any relevant systematic reviews identified, and by tracking citations of key papers using google scholar and web of science citation indexes. we used social/care farming and other relevant academic networks across europe to contact research experts or farmers to request any evaluations they have conducted. further relevant studies were identified through citation tracking activities. we hand‐searched the njas‐ wageningen journal of life sciences ( – ) and the abstracts of care farm and social farm conferences held in the uk and europe ( – ). . . | search terms the searches identified studies of care farms or agricultural‐related therapies and rehabilitation practices within a farm setting. the searches were not limited to a particular study type or participant group. scoping searches have indicated limited literature on “care farms”, and we therefore supplemented the “care farm” phrase searches with a broader search to identify agricultural‐related therapeutic and rehabilitative interventions that occur in farm settings. our search strategy excluded references indexed as animal‐only studies due to the high number of veterinary science studies of therapies for farm animals. the searches were comprised of a number of components and search terms using subject headings and text words, truncation, and phrase searching where appropriate (appendix . ). alerting systems were set up in databases (where available) to keep the reviewers aware of any studies published during the time frame of the review. the full search strategy can be found in appendix . . . | data collection and analysis . . | selection of studies we used a two stage screening process to identify eligible studies. • screening : titles and abstracts two reviewers independently screened the titles and abstracts of articles and grey literature retrieved to assess eligibility, as determined by the inclusion and exclusion criteria listed above. • screening : full text for those studies that were selected as potentially eligible for inclusion, full copies were retrieved and two reviewers indepen- dently assessed whether studies met the inclusion criteria. any disagreements were discussed and resolved by consensus at each stage of the eligibility assessment. multiple reports from the same study were coded separately before combining information across reports. we used the prisma chart to detail the process of study selection (moher, liberati, tetzalaff, & altman, ). • additional screening : theories mentioned in care farming publications during full paper screening we also looked for theories that had been applied or mentioned within care farming studies. even if the paper did not meet all of the inclusion criteria, it was retained so that we could use this as a source for identifying relevant theory. the aim was to collate all theories quoted in relation to care farming, which were then explored in greater detail and used as a basis for our theoretical framework that explores the mechanisms of the intervention. . . | data extraction and management we stored all the references identified by the search in endnote software (version x ). we recorded (in a microsoft excel spread- sheet) all websites searched and the details of any reports found or further contacts made. when screening full papers, we used the eppi‐reviewer (v. . . . ) software to keep records of all eligibility decisions. information on study design, sample characteristics, intervention characteristics (including contextual information about the care farms) and outcomes were extracted from studies using an adapted version of the cphg data extraction and assessment template (higgins & green, ) (see appendix . ). we used separate data extraction forms for recording contextual data about care farming interventions (see appendix . ), data from qualitative studies (see appendix . ) and data from quantitative studies (see appendix . ). primary investigators were contacted to request information on missing data. murray et al. | of http://www.controlled-trials.com/ http://enrd.ec.europa.eu/ http://enrd.ec.europa.eu/ https://www.justice.gov.uk/ http://www.carefarminguk.org/ http://sofar.unipi.it/index_file/socialfarfming.htm http://sofar.unipi.it/index_file/socialfarfming.htm http://www.umb.no/greencare http://library.wur.nl/frontis/farming_for_health http://www.greenchimneys.org https://www.novapublishers.com/catalog/product_info.php?products_id= https://www.novapublishers.com/catalog/product_info.php?products_id= http://www.regjeringen.no/nb/dep/lmd/dok/rapporter-og-planer/rapporter/ /green-care-in-the-nordic-countries--a-re.html?id= http://www.regjeringen.no/nb/dep/lmd/dok/rapporter-og-planer/rapporter/ /green-care-in-the-nordic-countries--a-re.html?id= http://www.regjeringen.no/nb/dep/lmd/dok/rapporter-og-planer/rapporter/ /green-care-in-the-nordic-countries--a-re.html?id= http://www.matmerk.no/inn-pa-tunet the data extraction for included information on the unit of analysis used in the studies, particularly where individual or cluster randomisation had occurred and whether individuals had received multiple interventions. during data extraction, we only included qualitative themes that represented the views of the cf service users. however, in studies involving service users with communication difficulties, we included themes based on the recorded perspectives of significant others (care farmers, carers and parents) on the impact of the cf on the service users. we excluded themes from others that were about their own experiences, for example, care farmers’ views on running a farm. for papers that reported theories related to care farming, we extracted any summaries explaining how care farms might work and the anticipated outcomes. if the identified paper failed to provide an adequate description of this process we sought to identify the seminal paper. . . | assessment of risk of bias in included studies qualitative studies were assessed using an adapted version of the consolidated criteria for reporting qualitative research (coreq) tool (long & godfrey, ; tong, sainsbury, & craig, ) (see appendix . ). three categories of reporting standards were established for each item: clearly met, unsure and not met. we did not exclude any qualitative studies based on bias. the epoc risk of bias tool was used to appraise rcts (higgins & green, ) (see appendix . ). the effective public health practice project tool (ephpp) was used to appraise other quantitative studies, such as controlled before and after studies or uncontrolled before and after studies (armijo‐olivo, stiles, hagen, biondo, & cummings, ) (appendix . ). studies with the majority of domains categorised as “unclear” in the epoc risk of bias tool were coded as high risk of bias; similarly, studies with two domains categorised as “weak” in the ephpp tool were coded as high risk of bias. we did not exclude any studies based on risk of bias. we pilot tested the tools with a sub‐set of identified studies to ensure a consistent approach to assessment within the team. two reviewers independently assessed risk of bias for each study. we resolved any disagreement by discussion or by involving an additional review team member. . . | measures of treatment effect where sufficient data was available we calculated effect sizes and % confidence intervals for each study using the campbell collaboration effect size calculator for rct’s and cba studies (wilson, n.d. https://campbellcollaboration.org/ escalc/html/effectsizecalculator‐smd .php). where data, such as standard deviations or pre/post correlation data was unavail- able, we contacted study authors. for studies without a control group and those where sufficient data was not available to calculate an effect size and study authors did not respond to requests for data, these studies have been included in the review and we report study authors’ findings. if meta‐analysis had been possible, these studies would not be eligible for inclusion in meta‐ analysis. there were not a sufficient number of studies that reported enough data to calculate effect sizes in any outcome category, thus quantitative studies were not quantitatively synthesised. the results of the quantitative studies are provided in table (outcomes) and table (proximal outcomes) which present the effects of individual studies. . . | data synthesis of qualitative and quantitative findings we based our data synthesis on a sequential exploratory approach (pluye & hong, ) (see figure ). this method involves: (a) identifying the main concepts from within theories found in relevant literature to explain why the intervention may work, (b) synthesising the qualitative data and then (c) inter- rogating the quantitative data to test the qualitative findings. there were several stages within this synthesis which ultimately aided the construction of a logic model to explain how care farms might work for the heterogeneous study population as a whole and also for each population group. we based the design of our logic models on the description and definitions provided by the mrc’s guidance for process evaluation of complex interventions (moore et al., ). here, a logic model is defined as: a diagrammatic representation of an intervention, describing anticipated delivery mechanisms (e.g. how resources will be applied to ensure implementation), intervention components (what is to be implemented), mechanisms of impact (the mechanisms through which an intervention will work) and intended outcomes. reproduced from moore et al. ( ) (p. ). given the range of outcomes studied in care farms research, we designed our logic models to distinguish between “endpoint” health outcomes and proximal outcomes or mediators which are likely to be on the path to the endpoint health outcomes. the stages of the synthesis were as follows: • stage : development of a preliminary theoretical framework to explain potential mechanisms of change • stage : identification of the key mechanisms of change, activities or intervention components and proximal outcomes as reported by service users attending care farms within qualitative studies • stage : mapping of the qualitative mechanisms and proximal outcomes to the theoretical concepts to create a logic model • stage : mapping of the outcomes from the quantitative studies to the logic model to identify out where the evidence lay of | murray et al. https://campbellcollaboration.org/escalc/html/effectsizecalculator-smd .php https://campbellcollaboration.org/escalc/html/effectsizecalculator-smd .php stage in stage , we examined papers that reported theories relating to care farming. if the included study reports did not provide adequate description of the theories, we retrieved the seminal articles of interventions which further described the theories. two reviewers (j. m. and n. w.) extracted information on the issue being addressed and the proposed mechanism of change. each summary was compared to identify areas of overlap in order to create a condensed set of concepts upon which to map the evidence. one reviewer (j. m.) conducted the analysis, and this was subsequently checked by a second reviewer (n. w.). stage in stage , two reviewers (n. w. and j. m. or h. e.) extracted themes from the qualitative studies to ensure that all relevant data had been captured. where discrete themes were not presented in the papers, we looked for evidence of consensus among the participants as well as any discordant experiences. negative as well as positive experiences were extracted. we opted for an inclusive approach to data extraction in the absence of discrete themes. the same reviewers independently reviewed each of the extracted themes to identify which were composite and represented multiple discrete findings. these composite themes were indepen- dently deconstructed and the eventual findings were compared to ensure consensus on interpretation. each finding was entered into a spreadsheet, alongside its source and the client group studied. three reviewers (j. m., n. w. and h. e.) independently categorised each finding as an intervention compo- nent (activity), mechanism, proximal and health outcome. these preidentified categories followed the definitions described in the mrc’s model (moore et al., ). each finding was defined as: • intervention: these included the facilities, activities and structure provided as part of the farm. • mechanism: the process by which part of the intervention might result in a particular outcome. these tended to be subjective experiences such as feelings and perceptions. for example, having physical contact with the animals (the intervention) would provide a sense of warmth and calmness (mechanism). explicit links between mechanism and part of the intervention were not always reported. there can be multiple and linear mechanisms leading to the same outcome. • proximal outcome: an immediate outcome derived from a particular mechanism within the intervention. primary health outcomes, as previously defined in this review, would not be categorised as a proximal outcome here. for example, having time away (mechanism) would lead to a sense of calm and reflection (also a mechanism) and feeling reduced stress (a proximal outcome). the key here is that there can be multiple proximal outcomes which mediate between the intervention activity and the outcome. on agreement between the reviewers, each finding was transcribed onto a post‐it note in preparation for a clustering exercise (backoff & nutt, ). the clustering exercise involved six additional reviewers (r. b., m. e., c. b., j. c., s. t. and d. s.), first, checking the groupings of intervention components, mechanisms and proximal outcomes on the post‐it notes. areas of disagreement were reviewed and amend- ments made if required. the post‐it notes with recorded mechanisms were divided up among the six reviewers who were asked to place one note each on a blank wall. the reviewers were then asked to continue placing their post‐it notes on areas of the wall according to emerging clusters of similar mechanisms. the exercise continued in silence until all the post‐it notes had been allocated. reviewers were then asked to stand back and review the clusters of post‐its on the wall and were given permission to move notes around without explanation. once completed the reviewers then discussed the composition and meaning of each cluster. each cluster (now assigned category) was labelled and entered onto the spreadsheet. detailed additional analysis of the contents of each category was performed by three reviewers (j. m., n. w. and h. e.) to ensure that each of the figure process of data synthesis murray et al. | of findings had not been over‐interpreted (i.e., assumptions about what the mechanism might lead to) and thus placed in an unsuitable category. given that the findings had been decontextualised during extraction and deconstruction of themes, this was an important iterative step that enabled the data to remain true to its source. for the intervention components, one reviewer (j. m.) grouped the findings according to congruency and labelled each of the categories; this was subsequently checked by another reviewer (n. w.). as a gauge of the potential relative importance of each of the categories of mechanisms, we assessed the spread of the categories (across all the studies) and the frequency of the findings within each category. we carried this out for all the studies (all population groups) and for each individual population group (wherever possible). we ordered the categories based on this assessment to explore the possibility that care farms might work in different ways for different populations. stage the categories of, interventions, mechanisms and proximal outcomes were mapped to the theoretical concepts identified in stage . this was performed by one reviewer (j. m.) and checked by a further two reviewers (n. w. and h. e.). the aim was to understand the ways in which change occurred and start testing out the theories using empirical data. stage two reviewers (n. w. and j. m. or h. e.) independently extracted all the quantitative results reported in the included studies. the quantitative data were summarised narratively according to the esrc guidance (popay, ). first, we assessed whether the care farms improved service user outcomes, caused harm to the service users or had no effect. if significant positive findings were observed, we searched for clinical cut‐offs to determine if the positive finding was clinically meaningful. second, we presented results as they were presented in the original studies for our primary outcomes. for example, if three studies measured quality of life, we reported each study finding separately showing whether they had found positive or negative results. due to the consider- able difference between studies, in terms of population groups studied, outcome measures and study designs, the results of the quantitative studies were not combined. they have instead been presented as individual study results against each outcome category. when sufficient data were available, effect sizes were calculated using the campbell collaboration effect size calculation tool. third, we evaluated the strength of the evidence using the findings from the risk of bias assessment. for example, if a study reported a positive finding, we then checked to see if that study was free from systematic error. finally, we mapped these quantitative results separately for each study to the logic model. this helped to identify outcomes in our logic model supported by the evidence base. . . | sensitivity analysis to measure the robustness of the results we planned to conduct sensitivity analyses. we intended to conduct sensitivity analyses according to study design (i.e., excluding controlled before and after designs and any other non‐rcts) and according to the risk of bias, whereby we would assess sensitivity based on the inclusion and exclusion of studies with high risk of bias. . . | assessment of publication biases we planned to use funnel plots for information about possible publication bias if we find sufficient studies (higgins & green, ). a minimum of studies with a common outcome measure is needed to be able to distinguish chance from real asymmetry (i.e., true publication bias) within the funnel plots (higgins & green, ). if asymmetry was found to be present, we would consider possible reasons for this. . . | deviations from protocol in addition to providing a summary of risk of bias across the various domains within the studies, we had planned to summarise the overall weight of evidence that each study would contribute the review findings. however, recent campbell reviews have tended not to use an overall quality scale. this is based on the concern that assessments of overall risk of bias may not take into consideration specific domains and are too dependent on the type of quality scale used (brody et al., ). following the search and data extraction process, it became clear that there were several additional population groups using care farms which we had not been identified when writing the protocol. given that our review aimed to understand how care farms may “work” for disadvantaged groups we decided to include any group that could be considered disadvantaged in some way. in light of this we included “socially isolated older people” but added an exclusion for “participants not from a vulnerable or disadvantaged population”. the process of review and data extraction helped us to further reflect on the definition of care farms. the definition of a cf used within the protocol was: “use of commercial farms and agricultural landscapes as a base for promoting mental and physical health through normal farming activities. specifically, providing a structured supervised programme of health, vocational, social and/or farm related activities for vulnerable people.” within the review process, the importance of the “normal farming activities” became clearer and helped us to distinguish between interventions that were specifically designed as a “therapy”, for example, horticultural therapy or equine therapy, and care farming which primarily focused on farming activity to sustain the farm and production, rather than primarily as therapy. the review process identified a diverse range of primary and proximal outcomes. the protocol stated that the primary of | murray et al. outcome was “quality of life”. however, the review process identified a large number of studies (nine were included) that measured depression and anxiety. as these outcomes are frequently considered as “endpoint” health outcomes, we in- cluded these as primary outcomes in our presentation of results and the logic models. the proximal and secondary outcomes identified during the review were varied and numerous. as described in the protocol we included any outcomes that used a recognised measure of health or wellbeing or behavioural factor and were assessed using self‐report or objective measures. this helped us to identify pathways to change for different disadvantaged groups and develop a logic model to explain these relationships. being too restrictive in the secondary outcomes for our review would have limited our understanding of these potential mechanisms. in addition to the extraction fields specified in the protocol, we also extracted data on “duration of follow‐up” ( . . ) and “types of settings” ( . . ). this enabled us to understand the importance of the setting and the sustainability of the impacts of cares farms on participant outcomes. the protocol included a broad outline of the qualitative synthesis process. the detailed process of qualitative analysis using the four steps described in this report developed following further training of the review team on mixed methods systematic reviews. | results . | description of studies . . | results of the search we found , articles through searching of electronic databases and via grey literature retrieval methods (see figure ). after duplicates were removed, we screened , references based on title and abstract. we obtained full copies of articles and, of these, studies (reported in papers) met the inclusion criteria. in a separate screening process, we were able to identify theoretical and contextual information about care farming interventions in publications. seven of these theory publica- tions also reported empirical work, six had used qualitative figure prisma diagram murray et al. | of methods and one was an uncontrolled before and after study. these seven studies were screened and included in the subsequent stages of the review, that is, in the studies mentioned above. those that were purely theoretical or did not meet our inclusion criteria for empirical studies, were used only for stage of the review process. . . | included studies a total of studies were included. eighteen qualitative studies (reported in papers) (table ), quantitative studies (reported in papers) (table ), and one mixed methods study (elings et al., ) met the inclusion criteria for this review. figure logic model for all client groups figure logic model for mental ill‐health/substance misuse client groups of | murray et al. . . | identified theories for inclusion in the logic models from the theory publications we identified theoretical or philosophical concepts quoted in connection to care farming. nine had been applied within the included empirical studies, while the remaining eight had been mentioned alongside descriptions of care farming. of these theories, offered a potential explanation for how care farms might work to bring about change in various client groups (table ). the most commonly applied theoretical concept mentioned in studies was the recovery model (mentioned in four studies) (anthony, ). two concepts were philosophical rather than theoretical and did not offer a mechanistic explanation for how care farming might contribute to well‐being; namely, “existential issues” and “anthroposophy” (o’connor & chamberlain, ; figure logic model for disaffected youth group figure logic model for learning disabilities client group murray et al. | of t a b l e c h a ra ct e ri st ic s o f q u a li ta ti v e st u d ie s r e fe re n ce s c o u n tr y c li e n t g ro u p m e th o d n u m b e rs o f in te rv ie w e e s a g e , m e a n (r a n g e ) g e n d e r q u a li ty cr it e ri a m e t b a a rs e t a l. ( ) t h e n e th e rl a n d s m e n ta l il l‐h e a lt h in te rv ie w s a n d p h o to g ra p h y m a le , fe m a le < % b jø rg e n a n d jo h a n se n ( ) n o rw a y m e n ta l il l‐h e a lt h f o cu s g ro u p s a – – < % e li n g s ( ) t h e n e th e rl a n d s l e a rn in g d is a b il it ie s in te rv ie w s, p a rt ic ip a to ry o b se rv a ti o n a – – < % e li n g s a n d b e e re n s ( ); e li n g s a n d h a ss in k ( , ) t h e n e th e rl a n d s m e n ta l il l‐h e a lt h : p sy ch ia tr ic ; su b st a n ce m is u se f o cu s g ro u p s – – < % e li n g s e t a l. ( ) t h e n e th e rl a n d s m e n ta l il l‐h e a lt h ; su b st a n ce m is u se in te rv ie w s a n d fo cu s g ro u p s a – – < % f e rw e rd a ‐v a n z o n n e v e ld e t a l. ( ) t h e n e th e rl a n d s c h il d re n w it h a u ti sm sp e ct ru m d is o rd e rs in te rv ie w s b – m a le , fe m a le < % g ra n e ru d a n d e ri k ss o n ( ) n o rw a y m e n ta l il l‐h e a lt h : lo n g ‐s ta n d in g se v e re p sy ch o ti c d is o rd e rs , p e rs o n a li ty d is o rd e rs ; su b st a n ce m is u se in te rv ie w s – m a le , fe m a le > % h a ss in k , ; h a ss in k , e li n g s, z w e e k h o rs t, v a n d e n n ie u w e n h u iz e n , a n d s m it ( ) t h e n e th e rl a n d s m e n ta l il l‐h e a lt h ; d is a ff e ct e d /e x cl u d e d y o u th ; o ld e r p e o p le in te rv ie w s a – m a le , fe m a le > % ia n cu e t a l. ( ) t h e n e th e rl a n d s m e n ta l il l‐h e a lt h in te rv ie w s – m a le , fe m a le > % k a le y ( ) u k l e a rn in g d if fi cu lt ie s in te rv ie w s a n d v id e o re co rd in g , a n d p h o to g ra p h ic m e th o d a – m a le , fe m a le > % k o g st a d e t a l. ( ) n o rw a y d is a ff e ct e d /e x cl u d e d y o u th in te rv ie w s . ( – ) m a le , fe m a le > % l e ck e t a l. ( ) u k m e n ta l il l‐h e a lt h ; su b st a n ce m is u se ; d is a ff e ct e d /e x cl u d e d y o u th ; le a rn in g d if fi cu lt ie s in te rv ie w s a n d fo cu s g ro u p s – m a le , fe m a le < % p e d e rs e n e t a l. ( a ) n o rw a y m e n ta l il l‐h e a lt h : p e o p le w it h d e p re ss io n in te rv ie w s . ( – ) m a le , fe m a le > % s ch re u d e r e t a l. ( ) t h e n e th e rl a n d s d is a ff e ct e d /e x cl u d e d y o u th in te rv ie w s ( – ) m a le , fe m a le > % n o rt h e ss e x r e se a rc h n e tw o rk & s o u th e ss e x s e rv ic e u se r r e se a rc h g ro u p ( ) u k m e n ta l il l‐h e a lt h in te rv ie w s – m a le , fe m a le < % d e b ru in e t a l. ( ) t h e n e th e rl a n d s d e m e n ti a in te rv ie w s a (± . ) m a le , fe m a le > % (c o n ti n u e s) of | murray et al. steiner, ). these were excluded from the process of developing a theoretical framework. . . | characteristics of included qualitative studies all of the included qualitative studies (see table ) were conducted across three european countries (nine in the nether- lands; five in norway; and three in the uk) and one in the us. six of the studies focused solely on people with mental health problems, including people with depressive, psychotic or person- ality disorders. four studies included two client groups: those with mental health problems and/or drug and alcohol problems. other studies involving single client groups included two with learning disabilities, two with disaffected youth, and one including people with autism. two studies included more than two client groups, one of which also included older people. there were service users included in the studies. the maximum study group size was and the minimum was five service users. included studies also included other participants (such as officials, health professionals, farmers and family carers) where the findings from these groups focused on questions unrelated to the impact of care farms on client groups they were not included in the synthesis within this review. most of the studies used individual interviews (n = ) as the sole method for data collection. two used focus groups, two combined focus groups and individual interviewing, and a further two included video and photography combined with interviewing. there were three studies that involved “significant others” in eliciting the experiences and effects of care farming from service users with communication difficulties. in the first of these three studies, the sole source of information was care farmers (ferwerda‐van zonneveld, oosting, & kijlstra, ). in the second study, limited information was gathered from service users (elings, ), and in the third study, accounts of farmers, carers and parents supplemented the visual elicitation methods adopted by the researcher (kaley, ). ten studies failed to provide information on the age of the study participants, and gender was not reported in five studies. excluding those studies where gender was not reported, there were almost twice as many male service users participating in the studies as females (ratio of . : ). . . | characteristics of included quantitative studies the studies were conducted in five different countries: four in norway; four in the uk; three in the netherlands, and one each in pakistan and the united states (see table ). there were two rcts and three controlled before and after studies (cbas), with the remaining nine using an uncontrolled before and after design (ubas). the two rcts involved single target groups, both focusing on mental illness. ten studies evaluated the effects of care farming on a targeted single client group: six were on service users with mentalt a b l e (c o n ti n u e d ) r e fe re n ce s c o u n tr y c li e n t g ro u p m e th o d n u m b e rs o f in te rv ie w e e s a g e , m e a n (r a n g e ) g e n d e r q u a li ty cr it e ri a m e t a n d e rs o n , c h a p in , r e im e r, a n d s if fr i ( ) u s a m e n ta l il l‐h e a lt h ; co g n it iv e im p a ir m e n t in te rv ie w s a – – < e ll in g se n ‐d a ls k a u e t a l. ( ) n o rw a y m e n ta l‐i ll h e a lt h in te rv ie w s – m a le . fe m a le > a o th e rs a ls o in te rv ie w e d in th e st u d ie s: b jø rg e n a n d jo h a n se n ( ), fo u r o ff ic ia ls fr o m co n tr a ct in g a g e n cy ; e li n g s ( ), ca re rs /f a rm e rs (m o st o f th e in te rv ie w in g w a s co n d u ct e d w it h fa rm e rs ); f e rw e rd a ‐v a n z o n n e v e ld e t a l. ( ), se v e n fa rm e rs ; h a ss in k ( ) a n d h a ss in k e t a l. ( ), fa rm e rs a n d h e a lt h p ro fe ss io n a ls ; k a le y ( ), si x ca r fa rm st a ff a n d se v e n ca re rs (t h is d a ta o n ly su p p le m e n te d th e in te rv ie w s w it h se rv ic e u se rs ; d e b ru in e t a l. ( ), p e o p le o n a w a it in g li st fo r th e c f a n d p e o p le a tt e n d in g re g u la r d a y ca re se rv ic e s. b t h e se w e re fa rm e rs w h o p ro v id e d in fo rm a ti o n o n b e h a lf o f th e se rv ic e u se rs . murray et al. | of t a b l e c h a ra ct e ri st ic s o f q u a n ti ta ti v e st u d ie s s tu d y d e si g n r e fe re n ce s c o u n tr y c li e n t g ro u p c o n tr o l g ro u p s a m p le si ze a g e g e n d e r d u ra ti o n p ro x im a l o u tc o m e s (m e a su re s) o u tc o m e s (m e a su re s) f o ll o w ‐u p s r c t b e rg e t e t a l. ( , , ) n o rw a y m e n ta l il l‐h e a lt h : p a ti e n ts w it h p sy ch ia tr ic d is o rd e rs t re a tm e n t a s u su a l fo r q o l a n d fo r b d i a n d s t a i . ± . ( – ) ( . % ) m a le , ( . % ) fe m a le h r, tw ic e a w e e k , fo r w e e k s c o p in g (c o p in g s tr a te g ie s s ca le ); se lf e ff ic a cy (g e n e ra li se d s e lf ‐e ff ic a cy s ca le ); w o rk a b il it ie sa ,b q u a li ty o f li fe (n o rw e g ia n v e rs io n o f q u a li ty o f l if e s ca le ); d e p re ss io n (t h e b e ck d e p re ss io n in v e n to ry ); a n x ie ty (t h e s p ie lb e rg e r s ta te ‐t ra it a n x ie ty in v e n to ry ) w e e k s (i m m e d ia te ly a ft e r c f ) a n d m o n th s r c t p e d e rs e n e t a l. ( b ) n o rw a y m e n ta l il l‐h e a lt h : p e o p le w it h cl in ic a l d e p re ss io n w a it li st co n tr o l g ro u p in te rv e n ti o n : . ± . ; co n tr o l: . ± . in te rv e n ti o n : m a le , fe m a le ; co n tr o l: m a le , fe m a le . – h r, tw ic e a w e e k , fo r w e e k s s e lf ‐e ff ic a cy (g e n e ra li se d s e lf ‐ e ff ic a cy s ca le ) d e p re ss io n (b e ck d e p re ss io n in v e n to ry ); a n x ie ty (t h e s p ie lb e rg e r s ta te ‐t ra it a n x ie ty in v e n to ry ‐s ta te s u b sc a le ) w e e k s a n d m o n th s a ft e r th e in te rv e n ti o n c b a d e b ru in ( ); d e b ru in e t a l. ( ) t h e n e th e rl a n d s o ld e r p e o p le > w it h d e m e n ti a r e g u la r d a y ca re fa ci li ti e s in te rv e n ti o n : . ± ; co n tr o l: . ± . in te rv e n ti o n : ( % ) m a le , ( % ) fe m a le ; co n tr o l: ( % ) m a le , ( % ) fe m a le h rs , – d a y s a w e e k c o g n it iv e fu n ct io n in g (m in i m e n ta l s ta te e x a m in a ti o n ); fu n ct io n a l p e rf o rm a n ce (t h e b a rt h e l in d e x ); m e d ic a ti o n u sa g e b ; to ta l n u m b e r o f d is e a se sb ; e m o ti o n a l w e ll ‐b e in g b ; n u m b e r o f cl in ic a ll y re le v a n t b e h a v io u ra l sy m p to m sb ; m e d ic a ti o n u sa g e b a n d m o n th s c b a e li n g s e t a l. ( ) t h e n e th e rl a n d s m e n ta l il l‐h e a lt h ; su b st a n ce m is u se d a y a ct iv it y p ro je ct s in te rv e n ti o n : ( – ); co n tr o l: ( – ) in te rv e n ti o n : % m a le , % fe m a le ; co n tr o l: % m a le , % fe m a le h r, a p p ro x im a te ly d a y s a w e e k s o ci a l fu n ct io n in g (t h e s o ci a l f u n ct io n in g s ca le ); m e n ta l fu n ct io n in g (t h e m e n ta l h e a lt h in v e n to ry ‐ ); a p p e ti te a n d e a ti n g p a tt e rn (s im p li fi e d n u tr it io n a l a p p e ti te q u e st io n n a ir e ) q u a li ty o f li fe (w h o q o l ‐b ri e f) a n d m o n th s u b a h a ss in k e t a l. ( ) t h e n e th e rl a n d s d is a ff e ct e d / e x cl u d e d y o u th n /a m a le : . ± . ; fe m a le : . ± . m a le , fe m a le h r, fo r h a lf a y e a r a t th e fa rm p ro b le m b e h a v io u r (y o u th s e lf r e p o rt ); c o p in g (u tr e ch t c o p in g l is t) ; se lf ‐ d e te rm in a ti o n (i p c l o c s ca le ) a n d m o n th s (c o n ti n u e s) of | murray et al. t a b l e (c o n ti n u e d ) s tu d y d e si g n r e fe re n ce s c o u n tr y c li e n t g ro u p c o n tr o l g ro u p s a m p le si ze a g e g e n d e r d u ra ti o n p ro x im a l o u tc o m e s (m e a su re s) o u tc o m e s (m e a su re s) f o ll o w ‐u p s u b a g o n za le z e t a l. ( , , a , b ); g o n za le z ( ) n o rw a y m e n ta l il l‐h e a lt h : p e o p le w it h cl in ic a l d e p re ss io n n /a . ( – ) m a le , fe m a le h r, tw ic e a w e e k , fo r w e e k s p o si ti v e a ff e ct (p o si ti v e a n d n e g a ti v e a ff e ct s ca le ); st re ss (t h e p e rc e iv e d s tr e ss s ca le ); g ro u p co h e si o n (t h e t h e ra p e u ti c f a ct o rs in v e n to ry c o h e si v e n e ss s ca le ) d e p re ss io n (b e ck d e p re ss io n in v e n to ry ); a n x ie ty (t h e s ta te ‐t ra it a n x ie ty in v e n to ry – s ta te s u b sc a le ) w e e k s a n d m o n th s a ft e r th e in te rv e n ti o n (i .e ., m o n th s) u b a p e d e rs e n e t a l. ( ) n o rw a y m e n ta l il l‐h e a lt h : p e o p le w it h cl in ic a l d e p re ss io n n /a . ( – ) m a le , fe m a le . – h r, tw ic e a w e e k , fo r w e e k s d e p re ss io n (b e ck d e p re ss io n in v e n to ry ); a n x ie ty (s ta te ‐t ra it a n x ie ty in v e n to ry ‐s ta te s u b sc a le ) w e e k s u b a ja v e d e t a l. ( ) p a k is ta n m e n ta l il l‐h e a lt h : d ia g n o si s o f sc h iz o p h re n ia n /a . ( – ) m a le , fe m a le – m e n ta l st a tu s (b ri e f p sy ch ia tr ic r a ti n g s ca le ); r e h a b il it a ti o n (m o rn in g si d e r e h a b il it a ti o n s ta tu s s ca le ) , a n d y e a r u b a h in e e t a l. ( b , c) u k m e n ta l il l‐h e a lt h ; su b st a n ce m is u se ; o ld e r p e o p le ; o ff e n d e rs n /a ( – ) ( % ) m a le , ( % ) fe m a le . h r ( – ) s e lf ‐e st e e m (r o se n b e rg s e lf – e st e e m s ca le ); m o o d (p ro fi le o f m o o d s ta te q u e st io n n a ir e ) d e p re ss io n (f ro m th e p ro fi le o f m o o d s ta te q u e st io n n a ir e ) im m e d ia te ly a ft e r th e in te rv e n ti o n u b a h in e e t a l. ( ) u k m e n ta l il l‐h e a lt h : a sy lu m se e k e rs a n d re fu g e e s, w h o a re su ff e ri n g fr o m p t s d a n d d e p re ss io n n /a – – – w e e k s q u a li ty o f li fe (c o r e o m ) e n d o f in te rv e n ti o n ( – w e e k s) u b a l a m b e rt ( ) u k l e a rn in g d if fi cu lt ie s; m e n ta l il l‐h e a lt h : a n x ie ty a n d /o r d e p re ss io n ; p sy ch o si s; p e rs o n a li ty a n d / o r so ci a l is su e s; p e o p le w it h b ra in in ju ry n /a . ± . ( % ) m a le , ( % ) fe m a le . d a y s g e n e ra l h e a lt h a n d a tt it u d e b ; o cc u p a ti o n a l fu n ct io n in g b q u a li ty o f li fe (e q ‐ d ) e n d o f in te rv e n ti o n a n d a m /p m (c o n ti n u e s) murray et al. | of health problems; two on disadvantaged youth; one on older people with dementia and one on offenders. within the mental illness studies, three specifically focused on clinical depression, with the remaining studies including a range of disorders, including schizoty- pal and affective disorders, posttraumatic stress disorder and psychosis. three studies used a mixed client group, with two including four different groups. data on ratio of male to female participants attending the care farms were provided in studies (one of which provided percentages rather than numbers); there were more than twice as many males compared to females (n = males; females). the mean ages of participants in the studies ranged from to years. however, age was not reported in two studies (hine, barton, & pretty, ; marshall & wakeham, ). the intensity and duration of interventions varied, but most commonly involved half day ( . – hr) or full day ( – hr) sessions two to three times per week over a week period. in the two studies involving disadvantaged youth (hassink et al., ; suprise, ), the duration of intervention was substantially longer, with one study mentioning months and the other with an open‐ended contract. studies involving service users with mental health problems most commonly stated a week intervention period. data collection time points one cba study involving offenders on a community order completed follow‐ups mostly just prior to the end of the intervention to maximise retention in the study (elsey, murray, & bragg, ). four uba studies (hine et al., ; hine, peacock, & pretty, b; lambert, ; pedersen, nordaunet, martinsen, berget, & braastad, ) performed follow‐ups immediately after the intervention. the rcts reported follow‐ups at months (from baseline) (berget, ekeberg, pedersen, & braastad, ; pedersen et al., b). the remaining studies reported outcomes at months (four studies), months (two studies) and months (one study). only one study did not report the time point of follow‐up (suprise, ). the longest follow‐up period reported was three years from a uba study (javed, chaudhry, suleman, & chaudhry, ) involving service users with mental health problems; however, the duration of the intervention was not provided. outcomes twenty four different defined outcome measures were applied across a spectrum of psychological, social, cognitive and physio- logical domains; six measured primary outcomes, measured proximal outcomes and one included measurement of both a proximal and as part of a subscale of a primary outcome). the maximum number of validated outcome measures applied within a single study was eight, with a mean number of four measures across the studies. in addition to these reported defined outcome measures, four studies also reported eight outcomes without naming or providing adequate description of the mea- sures. these were excluded from the analysis. four measures were used across four studies to measure quality of life: norwegian version of quality of life scale, whoqol‐brief,t a b l e (c o n ti n u e d ) s tu d y d e si g n r e fe re n ce s c o u n tr y c li e n t g ro u p c o n tr o l g ro u p s a m p le si ze a g e g e n d e r d u ra ti o n p ro x im a l o u tc o m e s (m e a su re s) o u tc o m e s (m e a su re s) f o ll o w ‐u p s u b a m a rs h a ll a n d w a k e h a m ( ) u k o ff e n d e rs n /a – – h r a n d m in , o v e r se ss io n s r e o ff e n d in g m o n th s u b a s u p ri se ( ) u s a y o u th in fo st e r ca re n /a ( – ) m a le , fe m a le u p to tw o ti m e s p e r w e e k w it h m a n y co m in g fo r y e a rs p ro so ci a l b e h a v io u r a n d so ci a l co m p e te n ce b w e e k s a b b re v ia ti o n s: b s i, b e ck d e p re ss io n in v e n to ry ; c b a , co n tr o ll e d b e fo re a n d a ft e r st u d y ; c f , ca re fa rm ; p t s d , p o st tr a u m a ti c st re ss d is o rd e r; r c t , ra n d o m is e d co n tr o ll e d tr ia l; s t a i, s ta te ‐t ra it a n x ie ty in v e n to ry ; u b a , u n co n tr o ll e d b e fo re a n d a ft e r st u d y . a w o rk a b il it y is a co m p o si te sc o re co m p ri se d in te n si ty a n d e x a ct n e ss b a se d o n o b se rv a ti o n a l m e a su re m e n t. b t h e se o u tc o m e s w e re n o t in cl u d e d in th e lo g ic m o d e ls a s th e m e a su re w a s n o t d e fi n e d o r th e o u tc o m e h a d b e e n m o d if ie d w it h o u t a d e q u a te d e sc ri p ti o n o r v a li d a ti o n . of | murray et al. table description of theories name of theory (reference) [included empirical study that refers to this theory] description theoretical concepts attention restoration theory (kaplan & kaplan, ) [ study: leck et al. ( )] according to kaplan and kaplan, there are two kinds of attention: involuntary attention and directed attention. involuntary attentions requires no effort, while directed attention requires a person to exert effort to avoid other distractions. for some people, the frequent use of directed attention to focus can contribute to mental fatigue. consequently, a person without directed attention is more likely commit “human error”, feel distracted and be less competent. kaplan and kaplan hypothesise that resting ones directed attention could recover a person who is experiencing mental fatigue restorative effects of nature psychoevolutionary theory (ulrich, ) [ study: leck et al., ] ulrich argues that being in contact with nature can reduce stress. he argues that affective reactions (i.e., feelings) precedes cognitive responses. an affective reaction is an immediate emotional response, that is naturally triggered such as joy, like or dislike. the affective reaction shapes the subsequent conscious processing, physiological responding and behaviour. according to ulrich, natural settings triggers positive affective reactions, followed by positive physiological response or positive behaviour restorative effects of nature biophilia (wilson, ) [ studies: pedersen et al., a and leck et al., ] biophilia is a fundamental and biologically based human need and a propensity to affiliate with life and lifelike processes. according to wilson biophilia is inherent in every person, put another way, it is a biological need. biophilia is part of people’s evolutionary heritage (i.e., our ancestors evolved in natural environments) restorative effects of nature presence theory (baart, ; droës & van weeghel, ; kal, ) caring involvement in response to the need for intimacy and involvement. people thrive on company but feel isolation if they lack intimacy. in presence approach, the “carer” offers a way out of isolation through being a caring presence. there are no hierarchical differences, no particular goal or intervention/treatment route… care worker is just “attentively present”. it requires trust, meaningful relationships, where client feels seen and counted. it is about being there, being together, doing things together being socially connected; mental well‐being social support and social interactions (cobb, ; house, ) [ study: ellingsen‐dalskaua et al., ] there are four main domains of support. informational support includes giving advice, information and instructions. emotional support is about having concern, listening and providing trust. appraisal support involves affirmation and feedback and is likely to be a part of the contact between the farmer and the participant. instrumental support is practical support and in the case of care farming the provision of, for example, tools, food and equipment. social support is information which lets us feel cared for and loved; esteemed and valued; a member of a network of mutual obligations. having social support facilitates coping with crisis and adaptation to change. since humans are innately drawn to animals, animals serve as a medium through which social interactions can transpire being socially connected; mental well‐being (continues) murray et al. | of table (continued) name of theory (reference) [included empirical study that refers to this theory] description theoretical concepts self‐efficacy theory (bandura, ) expectations of personal efficacy (i.e., the conviction that one can successfully execute the behaviour required to produce the outcome) can be derived from: personal growth ● performance accomplishment: repeated success ● vicarious experience: seeing others perform ● verbal persuasion: telling them what to expect ● emotional arousal: achieved through participant modelling or cognitive re‐evaluation shift‐desistance theory (evans & evans, ) [ study: marshal & wakeham, ] long‐term abstinence from criminal behaviour can be achieved by: personal growth; mental well‐ being; being socially connected • building and sustaining hope • recognising and developing people’s strength • respecting and fostering agency • improving social capital • developing human capital • recognising and celebrating progress salutogenic theory (antonovsky, , ) [ study: schreuder et al., ] having a positive outlook or optimistic attitude contributes to better health. the soc is used to explain why some people remain healthy under stress. the soc includes three dimensions: personal growth; mental well‐ being • comprehensibility: believe that the challenge is understood • manageability: believe that resources are available to cope • meaningfulness: believe that the challenge is worthy of commitment it is hypothesised that people with higher soc scores are more able to remain health under stress spiritual experience process funnel (fox, ) when people start to feel relaxed in wilderness they become open to opportunities for spiritual experience and become more connected to nature. over time this spiritual experience can develop into spiritual growth which can contribute towards significant changes in attitude and adoption of new behaviours restorative effects of nature recovery model (anthony, ) [ studies: granerud and eriksson, ( ) and elings et al. ( ); hassink, ; hassink et al., , iancu et al., ; kogstad et al., ) this is a person‐oriented perspective whereby people with mental disorders go through a personal journey and adapt to a new status quo and learn to find personal meaning despite and beyond the limitations imposed by their mental ill‐health: being socially connected; personal growth; mental well‐ being ● moratorium: denial of the mental diagnosis, confusion, helplessness ● awareness: awareness of a possible identity beyond that of a “sick person” ● preparation: focus on one’s values, strengths and weaknesses ● rebuilding: actively pursuing a positive identity, stablishing goals and taking responsibilities ● growth: living beyond disability and being resilient ecological model of aging (lawton & nahemow, ) through providing an environment that is a good fit with needs/abilities. purports that this is achieved through an environment that is compensatory, constant, predictable and stimulating (lawton, ) being socially connected; physical well‐being (continues) of | murray et al. core‐om and eq d. anxiety was measured in four studies (two rcts and two uba studies) using a single outcome measure (state trait anxiety inventory); this probably reflects the fact that three of the studies involved the same authors. similarly, two measures of depression (beck depression scale and a subscale within the profile of mood state) were applied across five studies. again, three of the four studies using the beck scale were written by the same authors. proximal outcomes included: coping (measured in two studies using different measures), self‐efficacy, cognitive functioning, func- tional performance, number of clinically relevant behavioural symptoms in dementia, social functioning, mental health and well‐ being, mental functioning, appetite and eating pattern, self‐esteem, positive effect, stress, group cohesion, mental status, psychiatric rehabilitation, mood and reoffending. . . | contextual information about care farming interventions three included studies did not provide contextual information about either the contents of the intervention or the organisational set‐up (ferwerda‐van zonneveld et al., ; lambert, ; leck, upton, & evans, ). across the client groups there were no obvious differences overall in the types of activities undertaken. this may, however, reflect the lack of detail provided about the interventions within the papers (table ). for example, the physicality of the work is likely to vary according to age, physical ability and mental health, but some studies only mentioned working with animals as an activity. the types of activities reported on care farms fell into four categories: • horticultural or land maintenance work—in addition to the more traditional growing of vegetables and fruit, activities also included hedge cutting, conservation work, tree planting and mending fencing. all client groups were reported to have participated in these types of activities. • conventional farm animal care—this involves working with animals traditionally associated with farming (e.g., cows, sheep and pigs). there were some examples where the work was truly agricultural, emulating the role of the farmer (berget, skar- saune, ekeberg, & braastad, ; marshall & wakeham, ), whereas with others the emphasis seemed to be about just being in contact with the animals, and interacting but without real agricultural purpose (little gate farm, ). some studies suggested farms offering both ways of working table (continued) name of theory (reference) [included empirical study that refers to this theory] description theoretical concepts attachment theory (bowlby, ) aims to address trust and security issues. through the use of animals to create healthy attachments and promote development of prosocial behaviours by restoring a sense of trust and security in interpersonal relationships being socially connected intentionally designed experiences (sheard & golby, ) taken from adventure playground literature but considered that green are activities are examples of ides with engagement with the natural world working at all levels: looking at nature, being active in nature, shaping nature and interacting with animals and the ides conceptualise how activities provide a chain of events where care farms are vectors for health benefits including first order outcomes achievement, restoration, resilience and empowerment and second order outcomes stress reduction, self‐efficacy, identity formation and social support restorative effects of nature; mental well‐being; being socially connected, personal growth therapeutic landscape concept (gesler, ) [ study: kaley, ] a therapeutic landscape is one win which “physical and built environments, social conditions, and human perceptions combine to produce an atmosphere which is conductive to healing…healing induces cure in the biomedical sense (physical healing), a sense of psychological well‐being (mental health) and feelings of spiritual renewal (spiritual healing)” restorative effects of nature; mental well‐being behavioural theory (lewinsohn, ) certain environmental changes and avoidant behaviours inhibit individuals from experiencing environmental reward and reinforcement and subsequently leads to the development of depressive symptoms. by encouraging individuals to take part in activities that create a sense of pleasure or mastery, avoidant behaviours can be reduced personal growth; mental well‐ being abbreviations: ide, intentionally designed experience; soc, sense of coherence. murray et al. | of t a b l e d e sc ri p ti o n s o f ca re fa rm in g in te rv e n ti o n s s tu d y b a ck g ro u n d in fo rm a ti o n a b o u t th e fa rm a ct iv it ie s c o n tr a ct u a l a rr a n g e m e n ts m e n ta l il l‐h e a lt h /s u b st a n ce m is u se ja v e d e t a l. ( ), p a k is ta n a th e ra p e u ti c co m m u n it y p ro v id in g su it a b le p ro g ra m m e s to a ch ie v e b e tt e r m a n a g e m e n t g o a ls fo r ch ro n ic sc h iz o p h re n ic s in th e co m m u n it y f is h fa rm in g , p o u lt ry fa rm in g , te d d y g o a t fa rm in g , m in i zo o , m a in te n a n ce o f h o n e y b e e h o u se s, g a rd e n in g a n d cu lt iv a ti o n o f cr o p s a n d v e g e ta b le s n o d e ta il s b e rg e t e t a l. ( ); b e rg e t e t a l. ( ), n o rw a y s tu d y in cl u d e s a n u m b e r o f fa rm s. it is u n cl e a r if th is is a n e x is ti n g a n im a l a ss is te d th e ra p y in te rv e n ti o n to su p p o rt p sy ch ia tr ic p a ti e n ts o r w h e th e r it w a s e st a b li sh e d ju st fo r th e p u rp o se o f th e re se a rc h st u d y si n ce o n ly tw o o f th e fa rm e rs h a d e x p e ri e n ce o f p sy ch ia tr ic p a ti e n ts p ri o r to th e st u d y t h e m a in p ro d u ct io n s w e re d a ir y co w s, sp e ci a li se d m e a t p ro d u ct io n w it h ca tt le , sh e e p o r h o rs e s. a ll d a ir y fa rm s h a d m e a t p ro d u ct io n w it h ca tt le in a d d it io n .s o m e a ls o h a d sh e e p o r h o rs e s. a ll fa rm e rs h a d sm a ll a n im a ls li k e ra b b it s, p o u lt ry , p ig s, ca ts o r d o g s a s p a rt o f th e fa r. t h e p a ti e n ts w e re o n ly w o rk in g w it h th e a n im a ls , p e rf o rm in g o rd in a ry st o ck m a n w o rk u n d e r su p e rv is io n o f th e fa rm e r; th e y w e re n o t a ll o w e d to d o o th e r k in d s o f fa rm w o rk . t h e fa rm e rs w e re to ld th a t th e w o rk sh o u ld d e p e n d o n th e p a ti e n t’ s co p in g a b il it y in te re st , a n d th a t p a ti e n ts sh o u ld h a v e o p p o rt u n it y fo r p h y si ca l co n ta ct w it h th e a n im a ls , fo r e x a m p le , p a tt in g , b ru sh in g , w a sh in g ; m o v in g th e a n im a ls b e tw e e n d if fe re n t p la ce s in th e co w sh e d ; fe e d in g a d u lt a n im a ls , o r m il k fe e d in g th e sm a ll a n im a ls ; cl e a n in g th e co w sh e d o r w a sh in g b u ck e ts a n d b o tt le s; m il k in g n o d e ta il s b jø rg e n a n d jo h a n se n ( ), n o rw a y in v o lv e s a n u m b e r o f fa rm s th a t a im to h e lp p e o p le w it h m e n ta l il l‐h e a lt h t e n d in g to li v e st o ck a n d v e g e ta b le g a rd e n s, b a k in g , ca rp e n tr y , m o u n ta in tr ip s o r v is it s to o th e r fa rm s. e v e ry d a y st a rt s w it h a cu p o f co ff e e a n d d is cu ss in g th e d a y ’s ta sk s, a n d e v e ry fa rm h a s g ro u p lu n ch e s t h e p ro g ra m m e is co n tr a ct e d b y th e re le v a n t m u n ic ip a li ty in n o rw a y o r th e l a b o u r a n d w e lf a re a d m in is tr a ti o n fr o m fa rm s th a t a re p re p a re d a n d w il li n g to o ff e r it e li n g s ( ), t h e n e th e rl a n d s n o d e ta il s w o rk in g o n th e fa rm , ca ri n g fo r a n im a ls (p ig s a n d co w s) , m a k in g ch e e se s, p ic k in g e g g s ca ri n g fo r h e n s, h o rt ic u lt u ra l a ct iv it ie s n o d e ta il s e li n g s e t a l. ( ), t h e n e th e rl a n d s a im d e p e n d in g o n th e cl ie n t b u t m o st ly : d a y ‐ a ct iv it y , re so ci a li sa ti o n , w o rk re h a b il it a ti o n . s tu d y in v o lv e d d if fe re n t fa rm s o ff e ri n g d if fe re n t w o rk a ct iv it ie s l im it e d in fo rm a ti o n o n a ct iv it ie s. n e x t to th e a g ri cu lt u ra l p ro d u ct io n , fa rm s o ft e n h a v e m o re m u lt if u n ct io n a l a ct iv it ie s li k e : a fa rm sh o p , ca m p in g si te o r n a tu re co n se rv a ti o n s o m e fa rm s h a v e co ll a b o ra te w it h a h e a lt h ca re in st it u ti o n . s o m e h a v e a n in d iv id u a l a w b z a a cc re d it a ti o n . s o m e fa rm s h a v e a n a n tr o p o so p h ic a l o r c h ri st ia n b a ck g ro u n d .f u n d in g ca n a ls o b e th ro u g h p e rs o n a l b u d g e t g o n za le z e t a l. ( ), n o rw a y n o d e ta il s p ro v id e d t h e ra p e u ti c h o rt ic u lt u re . a ct iv e a n d p a ss iv e p a rt ic ip a ti o n in g a rd e n in g a ct iv it ie s. t h e a ct iv e p a rt s o f th e p ro g ra m m e in cl u d e d so w in g , se e d g e rm in a ti n g , p o tt in g , p la n ti n g a n d cu lt iv a ti n g v e g e ta b le s, fl o w e r a n d h e rb s. t h e p a ss iv e p a rt s in cl u d e d si tt in g o n b e n ch e s, a n d w a tc h in g a n d li st e n in g to b ir d s, th e w e a th e r a n d th e la n d sc a p e n o d e ta il s p ro v id e d (c o n ti n u e s) of | murray et al. t a b l e (c o n ti n u e d ) s tu d y b a ck g ro u n d in fo rm a ti o n a b o u t th e fa rm a ct iv it ie s c o n tr a ct u a l a rr a n g e m e n ts g ra n e ru d a n d e ri k ss o n ( ), n o rw a y e n a b li n g p e o p le w it h p h y si ca l, m e n ta l a n d e m o ti o n a l fu n ct io n a l li m it a ti o n s o f d if fe re n t k in d s to in te g ra te so ci a ll y . s tu d y fo cu se d o n p e o p le w it h m e n ta l il l‐h e a lt h a n d su b st a n ce m is u se s p e ci fi c to th e st u d y p a rt ic ip a n ts , a ct iv it ie s o ft e n p e rf o rm e d in sm a ll g ro u p s, w it h e a ch g ro u p ta k in g tu rn s e n g a g in g in d if fe re n t ty p e s o f w o rk o n a fa rm (c a n in cl u d e lo o k in g a ft e r a n im a ls , cu tt in g w o o d o r w o rk in g w it h p la n ts ) o r in a fa rm h o u se , su ch a s co o k in g fo r a ll m e m b e rs o f th e ir g ro u p , la y in g th e ta b le o r w a sh in g u p d is h e s h in e e t a l. ( b ), u k s tu d y in v o lv e s se v e n fa rm s p ro v id in g a w id e v a ri e ty o f a ct iv it ie s. in d iv id u a l a im s o f fa rm s n o t re p o rt e d a ct iv it ie s v a ri e d w id e ly b u t in cl u d e d : cl e a n in g o u t tu rk e y s a n d p u t fr e sh st ra w d o w n ; w o rk in g w it h th e d o n k e y s, sh e e p a n d h o rs e s; fe e d in g a n d g ro o m in g h o rs e s; w e e d in g ; ta k in g fe n ce s d o w n : p la n ti n g tr e e s; cl e a n in g o u t st a b le s; m il k in g ; m ix in g a n im a l fe e d s; co ll e ct in g e g g s; fe e d in g a n d w a te ri n g co w s, p ig s, g o a ts ; m u ck in g o u t; fa rm m a in te n a n ce n o d e ta il s h in e e t a l. ( ), u k a s a n u rb a n fa rm it a im sa to p ro v id e e d u ca ti o n a l, re cr e a ti o n a l a n d th e ra p e u ti c a ct iv it ie s th a t: (a ) su p p o rt d is a d v a n ta g e d a n d d is a b le d p e o p le to b o o st th e ir co n fi d e n ce a n d a sp ir a ti o n s; (b ) p ro m o te e m o ti o n a l, m e n ta l, so ci a l a n d p h y si ca l w e ll ‐b e in g ; (c ) d e v e lo p e n v ir o n m e n ta l a w a re n e ss a n d a ct io n ; (d ) st re n g th e n co m m u n it y co h e si o n ; (e ) cr e a te e n jo y m e n t fo r m e m b e rs o f th e p u b li c p sy ch o e d u ca ti o n , m o v e m e n t th e ra p y , sh a ri n g fo o d a n d g a rd e n in g ia n cu e t a l. ( ) t h e n e th e rl a n d s fa rm s ch o se n fo r st u d y . n o o th e r d e ta il s a b o u t in d iv id u a l a im s p ro v id e d m o st a ct iv it ie s o n th e fa rm s w e re re la te d a g ri cu lt u ra l p ro d u ct io n ; tr a in in g o f u se rs fo r in te g ra ti o n in to th e la b o u r m a rk e t in tw o fa rm s a n d o th e r d a y ti m e a ct iv it ie s fo r p e o p le li v in g u n d e r su p p o rt e d h o u si n g (n = ). o n th e p ri v a te fa rm s, su p e rv is io n w a s p ro v id e d b y fa rm e rs (n = ), b y fa rm e rs p re v io u sl y tr a in e d a s m e n ta l h e a lt h n u rs e s o r so ci a l w o rk e rs (n = ), b y p ro fe ss io n a l a ct iv it y su p e rv is o rs (n = ) o r b y b o th tr a in e d fa rm e rs a n d p ro fe ss io n a ls (n = ) o n e ca re fa rm w a s o w n e d b y a m e n ta l h e a lt h o rg a n is a ti o n , a n d e m p lo y e d a fa rm e r a n d se v e ra l p ro fe ss io n a l a ct iv it y su p e rv is o rs fo r th e g u id a n ce o f u se rs . t h e re m a in in g ca re fa rm s w e re a ll p ri v a te ly o w n e d a n d ru n b y fa rm e rs a n d th e ir fa m il ie s n o rt h e ss e x r e se a rc h n e tw o rk & s o u th e ss e x s e rv ic e u se r r e se a rc h g ro u p ( ), u k t h e se rv ic e a im e d to w o rk w it h th e se rv ic e u se rs to b u il d th e ir re si li e n ce , d e v e lo p th e ir sk il ls a n d su p p o rt th e m to e st a b li sh a m e a n in g fu l li fe w o rk in g in th e w o o d la n d ,i ce cr e a m m a k in g ; p a in ti n g th e fe n ce s; ca m p fi re s; g ra ss cu tt in g ; w o rk in g w it h a n im a ls p la ce m e n ts co m m is si o n e d a s a p il o t st u d y b y th e lo ca l th e n p c t p e d e rs e n e t a l. ( , a , b ); n o rw a y t h re e se p a ra te st u d ie s b u t a ll in v o lv e d b e tw e e n a n d d a ir y fa rm s fr o m d if fe re n t co u n ti e s m il k in g , fe e d in g , fe tc h in g fe e d , cl e a n in g , m o v in g a n im a ls , m il k in g /f e e d in g ca lv e s, h a n d fe e d in g a n im a ls , te ch n ic a l p re p a ra ti o n b e fo re fe e d in g , g ro o m in g , m u ck in g , p h y si ca l co n ta ct w it h a n im a ls , o b se rv in g a n im a ls , in a ct iv it y , d ia lo g u e w it h th e fa rm e r, ta lk in g to th e a n im a ls , ta k in g ca re o f th e ca lv e s. t h e y co u ld a ls o ch o o se to sp e n d th e ir ti m e in p h y si ca l co n ta ct w it h th e a n im a ls n o d e ta il s (c o n ti n u e s) murray et al. | of t a b l e (c o n ti n u e d ) s tu d y b a ck g ro u n d in fo rm a ti o n a b o u t th e fa rm a ct iv it ie s c o n tr a ct u a l a rr a n g e m e n ts l e a rn in g d is a b il it ie s b a a rs e t a l. ( ) t h e n e th e rl a n d s d e sc ri b e d a s a th e ra p e u ti c w o rk a n d li v in g co m m u n it y w h ic h is p a rt o f a h e a lt h ca re in st it u te p ro v id in g th e ra p y a n d cl in ic a l d a y a ct iv it y a n d tr e a tm e n t f a rm w o rk a n d o th e r re la te d a ct iv it ie s li k e w o rk in g in th e fa rm sh o p , w o rk in g in th e h o u se h o ld a n d k it ch e n a n d d o o d d jo b s li k e , fo r e x a m p le , cu tt in g w o o d t a k in g p e o p le w it h p sy ch ia tr ic p ro b le m s b u t w it h n o p sy ch o si s. f u n d in g th ro u g h p a rt o f g e n e ra l h e a lt h co st s. o ff e n d e rs m a rs h a ll a n d w a k e h a m ( ), u k t o p ro v id e a ra n g e o f a ct iv it ie s th a t e n co u ra g e p a rt ic ip a n ts to v a lu e le a rn in g , in cl u d in g : b u il d a p ro so ci a l d ru g fr e e li fe st y le , in cr e a se se lf ‐ co n fi d e n ce , im p ro v e in te rp e rs o n a l sk il ls , d e v e lo p th e ir o w n p o te n ti a l, ch a ll e n g e th e ir cu rr e n t n o rm s a n d b e h a v io u rs , su p p o rt re d u ct io n o f a n d a b st in e n ce fr o m th e u se o f il le g a l su b st a n ce s. t h e y re g is te r a ll p a rt ic ip a n ts so th a t th e y ca n a ch ie v e n a ti o n a l o p e n c o ll e g e n e tw o rk q u a li fi ca ti o n s d a g g in g sh e e p , b u il d in g w a ll s, d e li v e ri n g la m b s, ro u n d in g u p ,f e e d in g a n d m a n a g in g sh e e p a n d ca tt le , sh e a ri n g , li tt e ri n g p e n s, tr a ct o r d ri v in g , p lo u g h in g , cu tt in g w e e d s a n d h e d g e s, in v e st ig a ti n g w il d li fe in p o n d s a n d ri v e rs c o n tr a ct th ro u g h lo ca l p ro b a ti o n se rv ic e . d is e n g a g e d y o u th h a ss in k e t a l. ( ), t h e n e th e rl a n d s d e cr e a se o f b e h a v io u ra l p ro b le m s, le ss re ci d iv is m , le ss su b st a n ce a b u se , fe w e r a p p e a ls to y o u th ca re , b a ck to sc h o o l o r w o rk , re st o ri n g co n ta ct p a re n ts /e n h a n ce d co n ta ct p a re n ts , re st o re d a il y sc h e d u le , im p ro v in g ch o ic e o f fr ie n d sh ip s t h e co n ce p t co n si st s o f th re e st e p s. ( ) s u rv iv a l. ( ) s ta y o n th e fa rm (l iv in g a n d w o rk in g ). d u ri n g th is st a y o n th e fa rm th e y o u n g p e o p le h a v e to : ta k e ca re o f th e ir re si d e n ti a l u n it ; w ri te a d a ir y ; le a rn to li st e n to th e fa rm e r a n d d o a ss ig n m e n ts . ( ) g u id a n ce — n o t o th e rw is e sp e ci fi e d k o g st a d e t a l. ( ), n o rw a y o ff e rs e m p lo y m e n t sc h e m e s fo r y o u th to im p ro v e th e ir o p p o rt u n it ie s fo r e n te ri n g th e w o rk fo rc e o r to a id th e m in co n ti n u in g th e ir e d u ca ti o n f e e d in g a n d ca ri n g fo r th e a n im a ls , cl e a n in g th e st a b le , w e e d in g th e v e g e ta b le g a rd e n , sp li tt in g fi re w o o d e m p lo y m e n t sc h e m e s a re fi n a n ce d b y th e la b o u r a n d w e lf a re se ct o r s ch re u d e r e t a l. ( ), t h e n e th e rl a n d s g e n e ra l o b je ct iv e s o f th e p ro g ra m m e a re to d e v e lo p m o re p o si ti v e p e rs p e ct iv e s in th e d o m a in s o f “f u n ct io n in g ” (e .g ., sc h o o l, w o rk o r fa m il y li fe ), w h il e d e v e lo p in g a w o rk a b le re la ti o n sh ip b e tw e e n y o u th a n d p a re n ts l iv in g a n d w o rk in g o n th e fa rm ( m o n th s) fo ll o w e d b y a m o n th a ft e rc a re p ro g ra m m e . a ct u a l fa rm in g a ct iv it ie s a re n o t d e sc ri b e d n o d e ta il s s u p ri se ( ), u s a t o e n d th e cy cl e o f v io le n ce b y cr e a ti n g a “t ru ly h u m a n e so ci e ty ” a n d th ro u g h a ct iv it ie s a n d te a ch in g h e lp ch il d re n to le a rn e m p a th y n o d e ta il s r e fe rr a ls v ia w e lf a re re fo rm a g e n ci e s. m a n y o f th e re fe rr e d fo st e r y o u th h a v e m e n ta l il l‐h e a lt h d ia g n o si s; so m e o f th e m o st co m m o n in cl u d e p t s d , d e p re ss io n , a n x ie ty a n d a tt a ch m e n t d is o rd e rs (c o n ti n u e s) of | murray et al. t a b l e (c o n ti n u e d ) s tu d y b a ck g ro u n d in fo rm a ti o n a b o u t th e fa rm a ct iv it ie s c o n tr a ct u a l a rr a n g e m e n ts o ld e r p e o p le /d e m e n ti a s ch o ls a n d v a n d e r s ch ri e k ‐v a n m e e l ( ), t h e n e th e rl a n d s a im is si m il a r to in st it u ti o n a l d a y ca re w h ic h is to o ff e r e x tr a ca re a n d m e a n in g fu l a ct iv it ie s, in cr e a se w e ll ‐b e in g ; o ff e r re sp it e , a ll e v ia ti n g so m e o f th e b u rd e n o f fa m il y ca re g iv e rs , so ci a l n e tw o rk a n d h o m e ca re se rv ic e s; a n d p re v e n t o r p o st p o n e n u rs in g h o m e a d m is si o n s. in cl u d e s th e co n ce p t o f n o rm a li sa ti o n o r so ci a li sa ti o n o f ch ro n ic ca re w it h it s a im to e n a b le p e o p le to li v e th e ir li v e s in th e ir o w n h o m e s fo r a s lo n g a s p o ss ib le w o rk in g in th e g a rd e n , so w in g a n d h a rv e st in g th e ir o w n v e g e ta b le s, h e lp in g to p re p a re th e ir o w n m e a ls , u si n g th e ir o w n v e g e ta b le s, ta k in g ca re o f th e a n im a ls t h e ca re fa rm w a s o p e ra ti o n a ll y e n tr u st e d to a n u rs in g h o m e . n u rs in g st a ff a re e m p lo y e d o n th e fa rm d e b ru in ( ); d e b ru in e t a l. ( ), t h e n e th e rl a n d s a im to p ro v id e a n a d e q u a te d a y st ru ct u re a n d a m e a n in g fu l d a y p ro g ra m m e to fr a il a n d /o r co m m u n it y d w e ll in g e ld e rl y p e o p le , so a s to p re v e n t so ci a l is o la ti o n a n d to o ff e r re sp it e ca re to in fo rm a l ca re g iv e rs a t h o m e a ct iv it ie s d o n o t co n tr ib u te to a g ri cu lt u ra l p ro d u ct io n . t h e y in cl u d e fa rm o r a n im a l re la te d a ct iv it ie s (w a tc h in g o r fe e d in g a n im a ls , cl e a n in g p e n s a n d ca g e s, p ic k in g e g g s) ; g a rd e n o r y a rd re la te d a ct iv it ie s (s w e e p in g y a rd s, g a rd e n in g , w o rk in g in g re e n h o u se ); g a m e s (p a rt y g a m e s, m e m o ry g a m e s, q u iz ze s, b il li a rd s, sh o v e lb o a rd ); cr a ft s (f lo w e r a rr a n g in g , d e co ra ti n g p o st ca rd s, k n it ti n g , m a k in g n e st b o x e s, sa n d in g o r p a in ti n g fe n ce s) ; o th e r le is u re a n d re cr e a ti o n a l a ct iv it ie s (d a n ci n g , si n g in g , g y m n a st ic s, g o in g fo r a w a lk , re a d in g , p a rt ic ip a ti n g in g ro u p d is cu ss io n s) ; d o m e st ic a ct iv it ie s (p e e li n g p o ta to e s, ch o p p in g fr u it a n d v e g e ta b le s, la y in g th e ta b le , d is h w a sh in g , sh o p p in g ); si tt in g o r p o tt e ri n g w h il e w a tc h in g a n d / o r ch a tt in g (n o in v o lv e m e n t in o rg a n is e d a ct iv it y ); re st in g (s le e p in g o r n a p p in g in ch a ir o r in b e d ) f a rm s a re o ft e n co ‐o p e ra ti v e s w it h re g u la r h e a lt h ca re in st it u ti o n s. t h e ir se rv ic e s a re fi n a n ce d b y th e d u tc h n a ti o n a l in su ra n ce sy st e m m ix e d g ro u p s l it tl e g a te f a rm ( ), u k t o e n ri ch th e li v e s o f ch il d re n w it h sp e ci a l n e e d s a n d g iv e th e m th e o p p o rt u n it y to g a in in d e p e n d e n ce a n d co n fi d e n ce ,w h il e a t th e sa m e ti m e h a v in g a lo t o f fu n a n d le a rn in g lo t o f n e w th in g s, su ch a s fa rm in g , a n im a l ca re a n d w h e re fo o d co m e s fr o m . t o su p p o rt le a rn in g d is a b le d a d u lt s to le a rn p ra ct ic a l fa rm a n d w o o d la n d sk il ls f a rm in g , a n im a l ca re , a n im a l fe e d in g a n d h a n d li n g , m a k in g o u r o w n p iz za d o u g h b a se s a n d to p p in g ; ch ic k cl e a n in g a n d h o ld in g , cr a ft (m a k in g b ir d fe e d e rs a n d b ir d ca k e , d e co ra ti n g a fl o w e r p o t a n d p la n ti n g a su n fl o w e r) ; w o o d la n d d e n b u il d in g ; a n im a l cl e a n in g a n d fe e d in g . a n im a l ca re , h o rt ic u lt u re , w o o d la n d m a n a g e m e n t, tr a d it io n a l sk il ls , e n te rp ri se a n d co n se rv a ti o n c h a ri ty fu n d in g ia n cu e t a l. ( ), t h e n e th e rl a n d s f iv e fa rm s st u d ie d in d e ta il w it h v a ry in g a im s: (a ) t o p ro v id e d a y ti m e o cc u p a ti o n to re si d e n ts o f su p p o rt e d h o u si n g ; (b ) to e n su re a n e n jo y a b le w o rk p la ce w it h so ci a l a n d w o rk sk il ls ca n b e le a rn e d ; (c ) to p ro v id e w o rk a n d fa ci li ta te t h re e fa rm s— d a ir y p ro d u ct io n ; th re e fa rm s— se ll in g p ro d u ce in fa rm sh o p ; tw o fa rm s— fa rm w o rk ; tw o fa rm s— ta k in g ca re o f a n im a ls ; re m a in in g o n ly re p o rt e d in in d iv id u a l fa rm s— p o tt e ry , te x ti le s, t w o in st it u ti o n a l fa rm s (o w n e d b y h e a lt h ca re o rg a n is a ti o n s) ; tw o co n tr a ct e d fa rm s (p ri v a te ca re fa rm s w o rk in g in co ll a b o ra ti o n w it h h e a lt h ca re o rg a n is a ti o n s) ; o n e in d e p e n d e n t fa rm (f in a n ci n g (c o n ti n u e s) murray et al. | of with animals, depending on the abilities of the client (berget et al., ). • additional farm animal‐based activities—beekeeping, fish farming, maintaining a mini zoo and working with donkeys. • other activities—these included working in the shop, outdoor recreational activities (camping, campfires, outdoor trips and den building) and indoor activities (baking, meal preparation, crafts, games, general household work and tractor driving). there was a general lack of information regarding contractual arrangements of care farms. a range of models were in place: care farms as part of a nursing home or mental health care organisation; privately‐owned farms working in collaboration with health care organisations (the netherlands and uk) or the welfare sector (norway) or probation (uk); and privately owned farms with income generated through personal budgets, charitable donations or grants. . . | excluded studies one hundred fifty‐one studies were excluded after examining the full text. four excluded studies consisted of single subject studies. eight studies were excluded because the participants were not from a vulnerable or disadvantaged population; for instance, the participants were school children visiting a farm for educational purposes. twenty‐four studies were excluded because the studies did not meet the care farming definition. some studies classified activities as “therapy” rather than activities that are therapeutic, so we excluded four studies. twelve studies were excluded on the grounds of setting; these studies were not delivered at a farm, but instead at a prison or a hospital. four studies were excluded because the intervention exclusively consisted of single activities such as gardening or horse riding. some studies combined different interventions, for example, care farming activities combined with learning music at a recreation centre. for these studies, it was difficult to separate the true effect of the care farms, so three studies were excluded. two studies consisted of “one‐off” educational visits to the cf and were excluded. eighty‐five studies were excluded because they were reviews, overviews, surveys, commentaries or editorials. five phd theses were excluded because their findings had been subsequently published elsewhere and the peer‐reviewed publication was included in this review. . | risk of bias in included studies . . | qualitative studies nine studies ( %) fully met more than % of the quality assessment criteria (table ). two studies (ellingsen‐dalskaua et al., ; pedersen et al., a) met more than % of the criteria. one study (baars, elings, & hassink, ) met < % of the criteria. clarity about the nature of the investigation, the presence of quotations reflecting the findings, and the presentation of clear major themes were the criteria most often addressed. conversely, open- ness about the researcher’s bias and assumptions, and evidence oft a b l e (c o n ti n u e d ) s tu d y b a ck g ro u n d in fo rm a ti o n a b o u t th e fa rm a ct iv it ie s c o n tr a ct u a l a rr a n g e m e n ts re in te g ra ti o n b e tw e e n u se rs a n d th e co m m u n it y ; (d ) to p ro v id e a n e n jo y a b le st ru ct u re d w o rk p la ce th a t fa ci li ta te s so ci a l in te ra ct io n ; (e ) to p ro v id e a sa fe e n v ir o n m e n t fo r w o rk , co n ta ct w it h a n im a ls a n d o p p o rt u n it ie s to b e o u ts id e ca rp e n tr y , m a in te n a n ce o f e q u ip m e n t, g u id in g sc h o o l g ro u p s, se rv in g se rv ic e u se rs in a ca fe th e ir se rv ic e th ro u g h p e rs o n a l b u d g e ts o f se rv ic e u se rs ) n o te :a w z b a cc re d it a ti o n — t h e d u tc h “g e n e ra l la w o n e x ce p ti o n a l m e d ic a l e x p e n se s” (a w b z ) p ro v id e s g e n e ra l in su ra n ce co v e ri n g sp e ci a l h e a lt h ca re n e e d s. c a re is e it h e r p ro v id e d “i n k in d ” th ro u g h ce rt if ie d h e a lt h ca re in st it u ti o n s o r ca n b e h ir e d b y cl ie n ts th ro u g h a p e rs o n a l b u d g e t. s o m e fa rm s in th e n e th e rl a n d s a re re g is te re d a s ce rt if ie d h e a lt h ca re in st it u ti o n s (e li n g s, ). s tu d ie s in w h ic h n o d e ta il s a b o u t th e in te rv e n ti o n in cl u d e d : l e ck e t a l. ( ); d i a co v a ( ); f e rw e rd a ‐v a n z o n n e v e ld e t a l. ( ); l a m b e rt ( ). a b b re v ia ti o n : p t s d , p o st tr a u m a ti c st re ss d is o rd e r. a in fo rm a ti o n o b ta in e d fr o m fa rm w e b si te : h tt p :/ /v a u x h a ll ci ty fa rm .o rg /a b o u t/ w h a t‐ w e ‐d o /. of | murray et al. pre‐existing or newly established relationships were only addressed by one study each. two criteria fundamental to all research practice are evidence of ethical approval and of informed consent. these were not reported in nine ( %) studies. we observed that eight of the ten studies that met (fully or partially) more than % of the quality criteria used a theoretical framework. conversely, only one (leck et al., ) of the eight studies scoring < % in the quality assessment used a theoretical framework. the implications this might have on the quality of the results are unclear. studies involving service users with mental health problems that used the recovery model reported greater variability in the extracted findings, specifically the range of mechanisms, compared to those who did not use a framework. . . | quantitative studies all the included quantitative studies had many limitations and were assessed as having a high risk of bias. a summary of the risk of bias of the quantitative studies can be found in tables and . randomised controlled trials allocation. the method of random sequence generation was described clearly in both rcts. for example, berget et al. ( ) used computer‐generated random numbers. however, only one study clearly described the allocation concealment. berget et al. ( ) did not address allocation concealment whereas in pedersen et al. ( b) randomisation was conducted by a researcher blinded to farm and participants. baseline outcomes. patient outcomes were measured at baseline in both studies, and one study reported no important differences across intervention groups (berget et al., ). however, pedersen et al. ( b) reported higher depression scores and anxiety scores in the control group at recruitment, and higher self‐efficacy scores in the intervention group at recruitment, but these differences at baseline were not adjusted in the analysis. baseline characteristics. pedersen et al. ( b) reported differences in baseline characteristics between the intervention and control groups. for example, there were more men, and participants were older and better educated in the intervention group. it is unclear whether the baseline characteristics were similar in the study conducted by berget et al. ( ). for instance, some characteristics are mentioned in text, but no data were presented for the intervention and control groups separately. incomplete outcome data. both studies reported attrition rates and the number of participants excluded from the analysis. in both studies, proportionally more people dropped out of the cf arm than in the control arm: % and % (berget et al., , ) versus % and % (pedersen et al., b). it should be noted that in the latter study (pedersen et al., b), the number of included participants were very small (n = ), the control group was a wait‐ list group, and half of those dropping out of the cf arm did so before the intervention started. the reasons for drop out were little interest in animals and boredom (berget et al., ). furthermore, it was reported that significantly higher drop‐out rates were observed in those using sleeping medication (p = . ), and hospitalised patients (p = . ) (berget et al., ). blinding. primary outcomes variables were not assessed blindly in both studies (berget et al., ; pedersen et al., b). this was reported as a limitation in the discussion section of both studies. contamination. pedersen et al. ( b) used a wait‐list control group and it is unlikely that the wait‐list control group received the intervention prior to the intervention group. however, it is uncertain whether there was contamination in berget and colleagues’ study. they report that the control group received treatment as usual, but do not give any additional description. selective outcome reporting. there was no evidence that the out- comes were selectively reported in both studies; for instance, all the outcomes described in the methods section were reported in the results section (berget et al., ; pedersen et al., b). neither study published a protocol detailing outcomes to be measured a priori. controlled before and after studies and uncontrolled before and after studies selection bias. only one study had selected individuals that were likely to be representative of the target population. three studies had selected individuals that were somewhat likely to be represen- tative of the target population, for example, through referral from clinicians in a systematic way. seven studies did not use a systematic process to select individuals. study design. we assessed the likelihood of bias due to the allocation process; all eleven controlled before and after studies and uncontrolled before and after studies were rated at moderate risk of bias as the investigators did not use a robust process to select participants. confounders. only one study controlled for at least % of relevant confounders. four studies controlled for approximately – % of relevant confounders. six studies either controlled < % of relevant confounders or did not report any confounders. blinding. in the majority of studies (nine studies), the outcome assessors were aware of the intervention status of participants. two studies did not describe blinding. data collection method. five studies used valid and reliable tools to collect data. four studies did not describe the reliability of the data murray et al. | of collection tools and two studies did not describe the data collection tools used to measure outcomes. withdrawals and drop‐outs. only one study reported a follow‐up rate > %. four studies reported follow‐up rates between – %. six studies either reported follow‐up rates < % or failed to report withdrawals and drop‐outs rates. . | synthesis of results . . | stage : development of a preliminary theoretical framework theories and theoretical concepts theories (see table for a complete list and descriptions) differed in scope and in the extent to which they explained causation, thus contributing to the development of a theoretical framework in different ways. with regards to scope, some theories provided a rich, focused, description for how multiple but seemingly disparate dimensions of life could combine to produce a specific outcome. for example, the recovery model (anthony, ) describes aspects of identity, achievement and social connectedness for improved mental health. in comparison, the ecological model of aging (lawton & nahemow, ) starts with a broader premise and offers a more superficial description of possible mechanisms drawing again on disparate entities, but with a set of defined outcomes relating to cognition, psychology and physiology rather than just one. some theories were complex, and so mapping the farming mechan- isms derived from the qualitative studies to them in their original state was impractical. instead we distilled out the key concepts from each table qualtiy assessment of qualitative studies section of tool (number of items) items most often addressed (number of studies plus number partially addressing item) items least often addressed (number of studies, plus number partially addressing item) background, research team and reflexivity ( ) is it clear what is being studied ( ) is it clear which author(s) conducted the interviews or focus groups? ( , plus ) is the gender of the researcher clear? ( , plus ) were the characteristics of the interviewer reported? ( ) evidence of relationship established between researcher/ interviewer and participant before the study commenced? ( plus ) did the researcher/interviewer indicate if there was a pre‐ existing relationship with the participant and if so, was this described? ( ) study design ( ) does the study state how many took part in the interviews/focus group/observations? ( plus ) does the author say how many interviews/focus group/observations were carried out? ( ) was audio or visual methods used to record/ collect the data? ( ) does the researcher state if anyone else was present during the interviews? ( , plus ) was data saturation discussed? ( ) data analysis and findings ( ) do the quotations reflect the findings? ( ) were major themes clearly presented in the findings? ( ) does the study report the number of coders involved? ( ) did the authors report checking back with informants over interpretation? ( ) table epoc risk of bias tool for randomised controlled trials of | murray et al. table ephpp risk of bias tool for cba and uba abbreviations: cba, controlled before and after study; ephpp, effective public health practice project; uba, uncontrolled before and after study. murray et al. | of theory and identified areas of overlap, which enabled us to transition from theories to five theoretical concepts. the final concepts and the theories from which they are derived are listed below: • restorative effects of nature: (attention restoration theory, the biophilia hypothesis, psychoevolutionary theory, spiritual experi- ence process funnel theory, intentionally designed experiences and therapeutic landscape concept). • being socially connected: through belonging and friendships (social support theory, attachment theory, ecological model of aging, recovery model, presence theory, desistence theory/ shift, therapeutic landscape concept and intentionally de- signed experiences). • personal growth: through increasing confidence, self‐efficacy, sense of achievement, spiritually, empowerment, having a better identity and being positive (self‐efficacy theory, desistence theory/ shift, salutogenic theory, intentionally designed experiences, recovery model and behaviour theory). • physical well‐being: improving or maintaining physical activity (ecological model of aging). • mental well‐being: coping, cognitive stimulation, meaningful life (salutogenic theory, social support theory, behavioural theory, ecological model of aging, shift desistance theory, recovery model, presence theory, intentionally designed experiences and therapeutic landscape concept). primary outcomes suggested by the theories primary outcomes explicitly suggested by these theories are depression and anxiety (behaviour theory; recovery model; shift desistance theory) and quality of life (salutogenic theory). proximal outcomes suggested by the theories proximal outcomes suggested by theories relate to confidence (shift desistance theory), stress (attention restoration theory; psychoevolu- tionary theory; intentionally designed experiences), coping (social support theory; shift desistance theory) and self‐efficacy (self‐efficacy theory), prosocial behaviours (attachment theory; shift desistance theory). this list of outcomes and proximal outcomes is not definitive since arguably many supposed outcomes might actually be part of the mechanisms contributing to the theory. for example, the recovery model talks about being “in work” as part of the recovery from mental illness rather than necessarily seeing it as an outcome in its own right. the aim here is to look at the role of various theories in explaining how care farms might work rather than defining the developing logic models by the theories themselves. . . | stage : identification of care farming components, mechanisms and proximal outcomes from qualitative studies through the process of deconstruction of reported themes, we identified intervention components (grouped into four categories), mechanisms (grouped into categories) and proximal outcomes. care farming components five categories of components were identified (see table ): • being in a group—comprised mostly positive findings about the benefits of working with other people. findings included “relatively stable and informal group working”, “working together” and “interacting with different people”. this category also included two negative findings (from two different studies both involving people with mental health problems) about this aspect of the care farming intervention, and these included “not wanting to interact with others” and “finding it challenging to deal with disabled users”. • the farmer—all findings were positive and related to how the farmer and farm staff supported the service users through the activities they provided and individually. findings included “being able to express how they felt”, the farming “seeing them as normal” and “providing practical experience”. • the work—findings relating to the actual activities revealed commonalities, but also diversity in preferences. the pressure of the work was valued in some studies, while in others being able to do work at one’s own pace was expressed as important. doing “real” and varied work was also reported as a benefit. there was one negative finding about “not enjoying some of the tasks because it was a working farm”. • the animals—none of the findings about animals were negative experiences. being able to touch, be responsible for and over- coming fear of animals were reported findings in this category. • the setting—quietness and space to be alone were common features of the setting that service users identified. being outside and experiencing nature were also reported. there was one table intervention categories derived from qualitative studies according to client group intervention category number of findings in each category (%) all client groups mental ill‐ health and substance misuse disaffected youtha learning difficultiesb being in a group ( ) ( ) ( ) ( ) the farmer ( ) ( ) ( ) ( ) the work ( ) ( ) ( ) ( ) the animals ( ) ( ) ( ) the setting ( ) ( ) ( ) ( ) all note: twenty‐two of mental ill‐health and substance misuse findings also included disaffected youth and service users with learning disabilities and older people. aonly five of findings were solely disaffected youth. bsevenof findings included service users from other groups. of | murray et al. negative finding involving mental health service users who felt that they were “on display” because of the educational visits. overall, care farming intervention components relating to the farmer and the work appeared to be prominent features in the findings (table ). despite the fact that data were infrequently reported for single client groups we did observe some differences in the types of components mentioned that may indicate differences in either the types of activities made available to disparate client groups or the level of importance of those activities to types of service users. for example, studies involving predominantly people with learning disabilities did not mention activities relating to the animals or the setting. however, studies involving disaffected youth reported a preponderance of work and setting related activities. mechanisms through the iterative clustering exercise, mechanism based findings were organised into categories of mechanisms (table for description of each category). across the studies the number of findings relating to mechanisms ranged from to . in general, theory‐based studies identified more mechanism findings (table ). in terms of frequency and spread of findings, “understanding the self”, “social relationships” and “belonging and non‐judgement” represented the most common categories across all studies (represented in bold in table ). “creating a new identity” and the farm as a “distraction” were least often observed across the studies. comparing mechanisms across client groups where there were sufficient data, we ordered the categories of mechanism according the frequency with which they were reported for each client group (table ). as all of the substance misuse findings were reported with mental illness findings, we report these as one client group. as the largest group, with findings from studies, a similar pattern to the overall findings was present in the mental health problems and substance misuse group. no findings relating to “reflection” or “creating a new identity” were found in this combined client group. for disaffected youth, “feeling safe” was more frequently reported than “belonging and non‐judgement”. “achievement and satisfaction” was frequently mentioned in both the mental health problems/substance misuse group and the learning disabilities group, but it was reported less often in the disaffected youth group. “reflection” was also reported more often in the disaffected youth group compared to the others. in the learning disability client group, “understanding the self” was reported less frequently than “social relationships”, “belonging and non‐judgement”, “social relationships” and “meaningfulness”. “physical health” was also reported much less frequently in this client group than in the others. “creating a new identity”, which described how people with learning disabilities aligned themselves with the farmer, was the seventh most often reported category, but did not appear in either the mental illness/substance misuse or the disaffected youth groups. as there were only and five findings from the older people and autistic spectrum disorder client groups respectively, we did not order the mechanisms according to frequency of reporting. proximal outcomes we extracted proximal outcomes (table ), identified by participants in the qualitative studies as benefits of being on a care farm. most (n = ) related to emotions, such as increased confidence and self‐esteem, which mainly arose from studies underpinned by the recovery model for mental health. improved coping and feelings of well‐being were also mentioned in numerous studies, as was independence. in five studies there were no reported outcomes. there were many more benefits reported by service users than those explicitly proposed by the theories, but as already mentioned in section . . (stage ), this may reflect the emphasis on theories on the mechanisms. in a study involving disaffected youth, only two proximal outcomes (happiness and changing behaviours) were reported. . . | stage : mapping of qualitative data to theoretical framework and creation of logic models the categories of mechanisms from the qualitative studies were mapped to the five theoretical concepts (table ). some of the categories fit across more than one concept. so, for example, “belonging/non‐judgement” included findings such as “being in an inclusive environment” and “animals are safe and do not judge”. we considered that the former example fitted better with the theoretical concept of “being socially connected” while the latter finding fit with “mental well‐being” (table ). only four single findings within the mechanism categories of “reflection”, “stimulation” and “feeling safe” appeared to map to the theoretical concept of “restorative effects of nature”. these findings were “silence in nature”, “peace”, “enjoying the sensory experience of being with animals” and “cuddling the animals gives a sense of security”. we considered that these primarily mapped to the theoretical concept of “mental well‐being”, but had links to the “restorative effects of nature”. the dearth of findings that map to this theoretical concept occurred despite “the setting” of a farm, which could be considered as “nature”, being mentioned frequently in the qualitative studies as an important component of the intervention. the theoretical concepts of “mental well‐being”, “being socially connected” and “personal growth” were best represented by the qualitative mechanisms overall. across the three main client groups (mental health problems/substance misuse; disaffected youth; learn- ing difficulties), there were some differences. in the mental health problems/substance misuse group, the number of mechanism findings that mapped to “mental well‐being” was almost double that of any other theoretical concept. in the other client groups, “being socially connected” and “mental well‐being” were similarly repre- sented by the mechanisms. the categories of mechanisms were then combined with the intervention components and proximal outcomes to create a logic model for the following client groups: murray et al. | of table description of mechanism categories and frequency of findings within each category mechanism categories description frequency of findings in each category (all groups from across all qualitative findings) achievement and satisfaction working at the farm gives service users a sense of satisfaction. at the farm participants learn to perform activities, hence they spent their days being constructive. there is satisfaction with using their bodies and spending time outdoors belonging and nonjudgement the care farm is seen by service users as a place of belonging and mutual acceptance. feelings of solidarity are created through shared experiences. service users enjoy working with the animals who are perceived to be nonjudgemental creating a new identity service users view themselves in a new light as a worker, principally as a farmer distraction the farm creates physical work which offers both a practical and mental distraction from service users own negative thoughts. conversations centre on work which offers further distraction feeling valued and respected service users feel valued, appreciated and needed by the farmer (and the animals) and consider that they are respected “for who they are” feeling safe the atmosphere at the farm creates a feeling of safety and security, providing a mental shield between illnesses and addictions. for some service users this experience is enhanced through physical contact with the animals but for others there is a need to overcome fear of animals which can then lead on to a feeling of safety learning skills care farms give service users the opportunity to learn new skills ranging from growing crops to looking after animals which enables some to gain qualifications enabling then to (re)enter the work place meaningfulness service users perceive tasks as meaningful because they are judged to be useful to others and are needed to conduct day to day activities at the farm. service users also see their role as personally meaningful, contributing to society giving them a sense of purpose, happiness and fulfilment nurturing through helping each other and caring for the animals/plants service users become consider of other peoples’ needs and recognise they are doing good for other living creatures physical well‐being through physical activity on the farm service users improve their physical strength. there is a sense of “good” tiredness from physical work. service users start to feel more independent and healthier reflection the care farm environment is quiet and peaceful allowing service users to stop and reflect about their problems, their social influences and also the progress they have made. for young people, working at the farm gives space and time away from their family and friends social relationships care farms provide opportunities for participants to interact with the farmer, and other service users. for instance, often service users were working together in groups which helped them to develop their communication skills. as the intervention progressed the service users deepened their relationships with the farmer and considered him as a role model. once service users gained social confidence, their social networks grew. in particular, they found that in social functions talking about their farm work was more interesting rather than talking about their illness. however, a few service users did not want to interact with others and found it difficult to deal with the diverse range of service users at the farm stimulation service users find tasks stimulating giving them more energy, encouraging a mindful approach to work especially around animals which are unpredictable. working with animals offers a sensory experience and the energy derived from the work enables them to work through their own problems better. the experience of being in nature is energising (continues) of | murray et al. • all client groups (figure ) • mental health problems and substance misuse (figure ) • disaffected youth (but includes some qualitative findings from other client groups) (figure ) • learning difficulties (but, as above, includes some qualitative findings from other client groups) (figure ) in general, there was a lack of sufficient evidence detailing which intervention component linked to which categories of mechanisms, and thereafter which proximal outcomes and outcomes. therefore, the logic models only provide a single connecting arrow between each of these aspects. . . | quantitative results the quantitative evidence was mapped onto both the proximal outcomes and the endpoint health outcomes in the logic models to. based on our overall logic model built from theory and the qualitative evidence, we expected to find empirical evidence suggesting that care farms would improve: endpoint outcomes: • quality of life (primary outcome identified from theory) • anxiety (primary outcome identified from theory and qualitative studies) • depression (primary outcome identified from theory) proximal outcomes: • self‐efficacy (theory) • confidence (theory and qualitative studies) • coping skills (theory and qualitative studies) • independence (qualitative studies) • social activity (qualitative studies) • self‐esteem (qualitative studies) • self‐image (theory and qualitative studies) • physical well‐being (including having more active lifestyles and being physically tired (all from qualitative studies) • happiness or well‐being (qualitative studies) • vocational skills (qualitative studies) • stress (theory) • negative behaviours (theory and qualitative studies) • medication usage (qualitative studies) no quantitative studies were found that evaluated the impact of care farms on confidence, personal identity and physical well‐being (including tiredness). changes in negative social behaviours were measured, but only one form (reduction in reoffending) was clearly defined. additionally, vocational skills may have been measured in the form of occupational functioning and work abilities. however, as these outcomes were either not defined or incorporated highly subjective measurements, there is no clear result. we found evidence relating to quality of life, self‐efficacy, coping skills, independence, social activity, well‐being, anxiety, depression, stress and medication usage. in addition to the outcomes identified from theory and qualitative evidence in the logic model, four further outcomes were found from the quantitative studies, namely cognitive functioning, improvements in psychiatric status (from chronic psychiatric illness), positive affect and appetite and eating pattern. these were added to the logic models. the majority of the evidence was derived from studies involving service users with mental health problems and substance misuse problems. this meant that quantitative results relating to disaffected youth and users with learning difficulties could not be mapped against these logic models. table (continued) mechanism categories description frequency of findings in each category (all groups from across all qualitative findings) structure the daily farming activities provided a predictable work environment to the service users. this consistency helped the service users to gain a normal rhythm. moreover, the farmers also allowed service users to work at their own pace as they understood that the service users can have a “bad day” and may not be able to work at full capacity. similarly, farmers involved participants in deciding tasks for the day understanding the self the care farm environment has allowed service users to better understand themselves. participant’s self‐awareness grew while at the care farm. for example, learning to master an activity at the farm increased their self‐respect and positive self‐image. at the farm, participants were free to be themselves, they also had the opportunity to learn and when they made mistakes they were given time and guidance to learn from their mistakes. this gave them the understanding that tasks at the farm are manageable which enhanced their self‐efficacy and self‐confidence. some found caring and cuddling animals helped them to deal with problems positive changes in self‐image reported in one paper (granerud & eriksson, ) suggested to mean changes in personal identity. murray et al. | of t a b l e m e ch a n is m s a n d p ro x im a l o u tc o m e s id e n ti fi e d in q u a li ta ti v e st u d ie s r e fe re n ce s n o . o f m e ch a n is m fi n d in g s c a te g o ri e s o f m e ch a n is m s t a rg e t g ro u p s o u tc o m e s re p o rt e d b y p a rt ic ip a n ts t h e o re ti ca l b a si s b a a rs e t a l. ( ) a ch ie v e m e n t a n d sa ti sf a ct io n ; b e lo n g in g / n o n ju d g e m e n t; d is tr a ct io n ; fe e li n g v a lu e d / re sp e ct e d ; le a rn in g sk il ls a ; n u rt u ri n g ; p h y si ca l w e ll ‐b e in g ; so ci a l re la ti o n sh ip s; st ru ct u re ; u n d e rs ta n d in g th e se lf a m e n ta l il l‐h e a lt h l e ss m e d ic a ti o n n o n e st a te d b jø rg e n a n d jo h a n se n ( ) d is tr a ct io n a ; fe e li n g sa fe ; so ci a l re la ti o n sh ip sa m e n ta l il l‐h e a lt h in cr e a se d co n fi d e n ce , p h y si ca l h e a lt h , v o ca ti o n a l re h a b il it a ti o n n o n e st a te d e li n g s ( ) a ch ie v e m e n t a n d sa ti sf a ct io n ; b e lo n g in g / n o n ju d g e m e n t; cr e a ti n g a n e w id e n ti ty ; fe e li n g sa fe ; fe e li n g v a lu e d /r e sp e ct e d a ; le a rn in g sk il ls ; m e a n in g fu ln e ss ; st im u la ti o n ; st ru ct u re ; u n d e rs ta n d in g th e se lf m e n ta l il l‐h e a lt h : se rv ic e u se rs w it h in te ll e ct u a l d is a b il it ie s im p ro v e d se lf ‐e st e e m n o n e st a te d e li n g s a n d b e e re n s ( ); e li n g s a n d h a ss in k ( , ) a ch ie v e m e n t a n d sa ti sf a ct io n ; b e lo n g in g / n o n ju d g e m e n t; d is tr a ct io n ; le a rn in g sk il ls ; m e a n in g fu ln e ss ; p h y si ca l w e ll ‐b e in g ; st im u la ti o n ; u n d e rs ta n d in g th e se lf a m e n ta l il l‐h e a lt h : p sy ch ia tr ic ; su b st a n ce m is u se in cr e a se d co n fi d e n ce a n th ro p o so p h y c e li n g s e t a l. ( ) f e e li n g sa fe ; m e a n in g fu ln e ss ; st ru ct u re m e n ta l il l‐h e a lt h ; su b st a n ce m is u se – n o n e st a te d f e rw e rd a ‐v a n z o n n e v e ld e t a l. ( ) f e e li n g sa fe ; re fl e ct io n ; st im u la ti o n ; st ru ct u re ; u n d e rs ta n d in g th e se lf c h il d re n w it h a u ti sm sp e ct ru m d is o rd e rs – n o n e st a te d g ra n e ru d a n d e ri k ss o n ( )b a ch ie v e m e n t a n d sa ti sf a ct io n ; b e lo n g in g / n o n ju d g e m e n ta ; fe e li n g sa fe ; fe e li n g v a lu e d / re sp e ct e d ; m e a n in g fu ln e ss ; p h y si ca l w e ll ‐b e in g ; st ru ct u re ; u n d e rs ta n d in g th e se lf m e n ta l il l‐h e a lt h : lo n g ‐s ta n d in g se v e re p sy ch o ti c d is o rd e rs , p e rs o n a li ty d is o rd e rs ; su b st a n ce m is u se im p ro v e d w e ll ‐b e in g , se lf p e rc e p ti o n ; so ci a l li fe a n d co n fi d e n ce r e co v e ry m o d e l h a ss in k e t a l. ( ), h a ss in k ( )b b e lo n g in g /n o n ju d g e m e n ta ; fe e li n g sa fe ; fe e li n g v a lu e d /r e sp e ct e d ; le a rn in g sk il ls ; so ci a l re la ti o n sh ip s; st ru ct u re ; u n d e rs ta n d in g th e se lf m e n ta l il l‐h e a lt h ; d is a ff e ct e d / e x cl u d e d y o u th ; o ld e r p e o p le – r e co v e ry m o d e l ia n cu e t a l. ( )b b e lo n g in g /n o n ju d g e m e n t; le a rn in g sk il ls a ; m e a n in g fu ln e ss ; p h y si ca l h e a lt h ; so ci a l re la ti o n sh ip s; u n d e rs ta n d in g th e se lf m e n ta l il l‐h e a lt h in cr e a se d co n fi d e n ce , m o o d a n d le ss ti re d n e ss r e co v e ry m o d e l k a le y ( )b a ch ie v e m e n t a n d sa ti sf a ct io n ; b e lo n g in g / n o n ju d g e m e n ta ; cr e a ti n g a n e w id e n ti ty ; fe e li n g v a lu e d /r e sp e ct e d ; m e a n in g fu ln e ss ; n u rt u ri n g ; so ci a l re la ti o n sh ip s; st im u la ti o n ; u n d e rs ta n d in g th e se lf l e a rn in g d if fi cu lt ie s in cr e a se d in d e p e n d e n ce , w e ll ‐ b e in g a n d re d u ce d a n x ie ty a n d h e a lt h y li fe st y le t h e ra p e u ti c l a n d sc a p e c o n ce p t k o g st a d e t a l. ( )b f e e li n g sa fe ; m e a n in g fu ln e ss ; p h y si ca l w e ll ‐b e in g ; re fl e ct io n ; so ci a l re la ti o n sh ip s; u n d e rs ta n d in g th e se lf d is a ff e ct e d /e x cl u d e d y o u th – r e co v e ry t h e o ry (c o n ti n u e s) of | murray et al. t a b l e (c o n ti n u e d ) r e fe re n ce s n o . o f m e ch a n is m fi n d in g s c a te g o ri e s o f m e ch a n is m s t a rg e t g ro u p s o u tc o m e s re p o rt e d b y p a rt ic ip a n ts t h e o re ti ca l b a si s l e ck e t a l., ( ) a ch ie v e m e n t a n d sa ti sf a ct io n ; b e lo n g in g / n o n ju d g e m e n t; fe e li n g sa fe ; le a rn in g sk il ls ; m e a n in g fu ln e ss ; n u rt u ri n g ; p h y si ca l w e ll ‐b e in g ; so ci a l re la ti o n sh ip sa ; st ru ct u re m e n ta l il l‐h e a lt h ; su b st a n ce m is u se ; d is a ff e ct e d /e x cl u d e d y o u th ; le a rn in g d if fi cu lt ie s in cr e a se d h a p p in e ss a n d im p ro v e d p ro so ci a l b e h a v io u rs a r t , b io p h il ia , p e t p e d e rs e n e t a l. ( b )b a ch ie v e m e n t a n d sa ti sf a ct io n a ; b e lo n g in g / n o n ju d g e m e n t; d is tr a ct io n ; fe e li n g sa fe ; fe e li n g v a lu e d /r e sp e ct e d ; le a rn in g sk il ls ; m e a n in g fu ln e ss ; n u rt u ri n g ; p h y si ca l w e ll ‐b e in g ; st im u la ti o n ; u n d e rs ta n d in g th e se lf m e n ta l il l‐h e a lt h : p e o p le w it h d e p re ss io n in cr e a se d co n fi d e n ce a n d in d e p e n d e n ce b io p h il ia ; s e lf ‐e ff ic a cy t h e o ry s ch re u d e r e t a l. ( )b f e e li n g v a lu e d /r e sp e ct e d a ; re fl e ct io n ; u n d e rs ta n d in g th e se lf a d is a ff e ct e d /e x cl u d e d y o u th – s a lu to g e n ic t h e o ry t h e n o rt h e ss e x r e se a rc h n e tw o rk ( ) a ch ie v e m e n t a n d sa ti sf a ct io n ; so ci a l re la ti o n sh ip s; st im u la ti o n ; u n d e rs ta n d in g th e se lf m e n ta l il l‐h e a lt h in cr e a se d in d e p e n d e n ce n o n e st a te d d e b ru in e t a l. ( ) f e e li n g v a lu e d /r e sp e ct e d ; m e a n in g fu ln e ss o ld e r p e o p le w it h d e m e n ti a – n o n e st a te d a n d e rs o n e t a l. ( ) s o ci a l re la ti o n sh ip s o ld e r p e o p le w it h co g n it iv e im p a ir m e n t o r cl in ic a l d e p re ss io n a n d y o u n g e r a d u lt s w it h tr a u m a ti c b ra in in ju ry in cr e a se d co n fi d e n ce a n d in d e p e n d e n ce n o n e st a te d e ll in g se n ‐d a ls k a u e t a l. ( ) u n d e rs ta n d in g th e se lf ;r e fl e ct io n ;a ch ie v e m e n t a n d sa ti sf a ct io n ; b e lo n g in g /n o n ju d g e m e n t; fe e li n g v a lu e d a n d re sp e ct e d m e n ta l il l‐h e a lt h f e e li n g h a p p ie r a n d h a v in g m o re e n e rg y s e lf d e te rm in a ti o n t h e o ry a c a te g o ry w it h m o st fi n d in g s. b st u d ie s sc o ri n g h ig h e r o n q u a li ty a ss e ss m e n t. c p h il o so p h ic a l co n ce p t ra th e r th a n th e o ry . murray et al. | of given the heterogeneity of the studies in terms of study design, participant groups, outcome measures, synthesis of quantitative results through meta‐analysis was not appropriate. quantitative endpoint and proximal outcomes are provided in tables and . . . | stage : mapping quantitative outcomes to the logic models mapping outcomes to the mental health/substance misuse logic model primary outcomes. three studies evaluated the effectiveness of care farms on quality of life, for service users with mental health or substance misuse problems. berget et al. ( ) reported no significant change in quality of life between groups, at week and ‐month follow up. similarly, elings et al. ( ) also found no significant change in quality of life between groups, at ‐ and ‐month follow up. furthermore, hine et al. reported a positive change in mean scores between baseline and end of intervention (approximately weeks), but this was not statistically significant. three studies (two rcts and a uba study) assessed participants’ anxiety at two follow‐up points (see table ). the first rct found no significant change in anxiety between groups at week follow‐up (berget et al., ). however, at ‐month follow‐up, they found a statistically significant positive effect of the intervention in reducing anxiety compared to the control group. the authors reported that this positive effect is also clinically significant because the participants were diagnosed with severe anxiety at baseline, which improved to moderate anxiety at ‐month follow‐up. in the second rct, pedersen et al. ( b) found no significant change in anxiety between groups at the end of the intervention follow‐up ( weeks) and months after the intervention (pedersen et al., b). gonzalez et al. ( a, b) reported a statistically significant but transient reduction in table numerical representation of qualitative findings of mechanisms for how care farming might work in different client groups category (containing qualitative findings) rank* (nth of categories) across different client groups** all client groups (n = studies/n = findings) mh/sm (n = studies/ n = findings) dy (n = studies/ n = findings) ld (n = studies/n = findings) achievement and satisfaction belonging/nonjudgement creating a new identity (no findings) (no findings) distraction (no findings) (no findings) feeling safe feeling valued/respected learning skills meaningfulness nurturing physical health reflection (no findings) (no findings) social relationships stimulation (no findings) structure understanding the self abbreviations: asd, autism spectrum disorder; dy, disaffected youth; ld, learning difficulties; mh, mental ill‐health; sm, substance misuse. *rank represents the frequency of the findings in each category and the spread of the findings across the studies for that client group. **older people and autism spectrum disorder not separately represented due to very low numbers of findings. the most common categories across all studies are highlighted in bold. table mechanisms mapped to theoretical concepts theoretical concept categories of mechanisms restorative effects of nature being socially connected belonging/nonjudgement, feeling valued and respected, social relationships, feeling safe and nurturing personal growth learning skills, understanding the self, reflection, nurturing, achievement and satisfaction, meaningfulness and creating a new identity physical well‐being physical well‐being mental well‐being feeling safe, structure, belonging/nonjudgement, meaningfulness, reflection, feeling valued and respected, achievement and satisfaction, stimulation and distraction of | murray et al. anxiety at week follow‐up, but anxiety levels were still within the clinically severe range (remaining above the estimated clinical cut‐off of ≥ ) (spielberger, ). at ‐month follow‐up, change in anxiety scores were no longer statistically significant. four studies reported depression outcomes immediately after completion of the intervention. both rcts reported no significant change in depression between groups at week follow‐up (berget et al., ; pedersen et al., b). a uba study found a statistically significant reduction in depression at the end of the intervention ( weeks), and months after the intervention (gonzalez et al., a, b). the results were clinically significant as the participants bdi scores moved from moderate to mild depression between baseline and first follow‐up. however, the results at second follow‐up were no longer clinically significant as the participants returned to baseline moderate level (beck, steer, & brown, ). in a further uba study (hine, ), a statistically significant decrease in the depression scores of participants from the start to the end of the intervention was reported; however, no further follow‐ups were reported. overall, the studies did not indicate that care farms can improve quality of life for people with mental health problems. also, the evidence on the effectiveness of care farms to reduce anxiety and depression within mentally unwell service users and those with substance misuse problems is inconsistent and therefore incon- clusive. proximal outcomes. two rcts measured self‐efficacy and both found no significant change in self‐efficacy, between groups, at week follow‐up (berget et al., ; pedersen et al., b). however, at ‐ month follow‐up, berget et al. ( ) found a statistically significant improvement in self‐efficacy. self‐esteem was measured in one uba studie (hine et al., b) the authors claim a statistically significant improvement in self‐ esteem at the end of the intervention, with no further follow‐ups reported. a statistically significant reduction in stress was also found at the end of the intervention ( weeks); however, this effect was not maintained months after the intervention (gonzalez et al., a, b). in addition, berget et al. ( ) reported no significant effect on coping, compared to the control group, at week and ‐month follow‐up. hine et al. ( b) reported a statistically significant improve- ment in mood (i.e., anger, confusion, depression, fatigue, tension and vigour) at the end of the intervention. similarly, javed et al. ( ) reported a statistically significant improvement in mental status and rehabilitation among service users with schizophrenia, at three‐year follow‐up. additionally, gonzalez et al. ( a, b) measured positive affect, which is the extent to which participants experienced the following affects: interested, strong, enthusiastic, inspired, proud, alert, strong and active. at week follow‐up, there was a statistically significant improvement in positive affect, but this was not maintained months after the intervention. social outcomes were measured in two studies. social functioning (including social engagement, interpersonal communication, indepen- dence and competence) was measured in one cba study and at ‐ month follow‐up, there was no effect on social functioning between the participants that went to care farms compared to participants that attended day activity projects (elings et al., ). gonzalez et al. ( a, b) assessed participants’ group cohesion using the therapeutic factors inventory cohesiveness scale which captured a person’s sense of belonging to the group and experience of acceptance, trust, and group cooperation. during the length of the intervention ( weeks), they found that the participants’ group cohesion significantly improved. one study measured participants’ appetite and eating patterns and at ‐month follow‐up, found no differences in appetite and eating patterns between service users attending care farms versus those at day activity projects (elings et al., ). overall, across all secondary outcomes there is inconsistency in the findings at immediate, months, months and longer‐term follow‐ups. most studies measured immediate follow‐up with few addressing longer‐term impacts. the impact of care farms on psychological, social and physical outcomes in service users with mental health problems or substance misuse problems remains unclear. mapping outcomes to the disaffected youth logic model three outcomes were reported for disaffected youth both at ‐ and ‐month follow‐ups (hassink et al., ). the authors reported a significant positive effect (md = . ) on problem behaviours (i.e., table representation of theoretical concepts in categories of mechanisms reported in qualitative studies theoretical concept number of qualitative mechanism findings all client groups mh/sm disaffected youth learning disabilities restorative effects of nature being socially connected personal growth physical well‐being mental well‐being all abbreviations: mh, mental ill‐health; sm, substance misuse. murray et al. | of internalising problems, anxiety/depression, being reserved, externa- lising problems, and delinquent behaviour) at ‐month follow‐up. four of seven aspects of coping questionnaire showed significant, positive improvements, including: seeking social support, passive expectancy, self‐esteem and active problem solving. no difference was found in self‐determination at both follow‐ups. the evidence on the impact of care farms for disaffected youth is scant. evidence for other client groups/mixed groups lambert ( ) observed a . points improvement in quality of life as measured by the eq‐ d health state score from baseline to end of the intervention for the mixed client group. however, the author did not report whether this overall score is statistically significant, or provide a standard deviation. nevertheless, lambert ( ) conducted subgroup analyses and found statistically signifi- cant improvement in quality of life among people with anxiety or depression, personality or social issues, and psychosis, but not for people with learning difficulties. in a cba study involving older people, de bruin ( ) reported no significant change in cognitive functioning at ‐month follow‐up between those attending care farms compared to a control group that attended day care facilities. in a very small uba study, marshall and wakeham ( ) reported a % reduction in expected ‐month reoffending rates for offenders attending a cf as part of their community order. de bruin et al. ( ) assessed whether older peoples’ functional performance (an individual’s dependence on a caregiver) and medication use would change after attending the care farm. at ‐month follow‐up, the authors reported no significant change in functional performance and medication use, compared to a control group that attended day care facilities. evidence on the impact of care farms for other client groups was scant. no conclusions could be drawn from the evidence that was available. | discussion . | summary of main results the studies included approximately participants from a range of client groups. the largest single client group (albeit spanning a range of conditions within the group) was those with mental health problems ( of studies). based on data from qualitative studies and information from theories, we were able to develop logic models to describe potential mechanisms for change for four client groups, namely those with mental health and/or substance misuse problems, disaffected youth, and people with learning disabilities. while there were some data on older people and individuals with autistic spectrum disorder it was insufficient to develop a client specific logic model. the developed overall model (for all client groups) highlights the importance of being in a nonjudgmental, structured, stimulating and safe environment that allows for reflection, thus helping individuals to: understand themselves; feel that they belong, are valued and respected; develop social relationships; have a sense of achievement, satisfaction and meaningfulness; learn new skills; allow for the development of and nurture a new identity if wanted; and become physically healthy. these mechanisms are a good fit with a number of theories, and this review provides the first attempt to map evidence from quantitative and qualitative studies against the concepts of these theories in relation to care farms. although we ordered mechanisms based on frequency and spread, we do not suggest that any one mechanism is any more important than any other at an individual level. however, based on available data, we observed potential differences in the way care farms work for particular client groups. while this may reflect differences in the focus of the topics covered in the qualitative methods used by different authors, these differences are worth further exploration. for example, a sense of achievement and satisfaction appeared to be more important to the substance misuse/mental illness and the learning disabilities service users groups compared to the disaffected youth service group, where feeling safe may be a priority. in this latter client group, having the opportunity to reflect seemed to be valued. while we do not have sufficient data to be able to robustly link the intervention components to the mechanisms, we do tentatively suggest that in the disaffected youth group the emphasis on reflection appears to fit with the greater focus on the “setting” aspect of the intervention. as with the causal pathway between intervention components and mechanisms, the relationship between many of the mechanisms and proximal outcomes/outcomes is unclear. for example, “understand- ing the self” (a mechanism category), which included findings such as increasing self‐respect and understanding of tasks that are manage- able, could potentially be linked to proximal outcomes relating to self‐efficacy and improved confidence. however, with others which were seemingly important mechanisms such as “belonging and non‐ judgement”, the connection to outcomes is less clear. it is likely that many of these mechanisms interact in a way that is not yet understood to influence outcomes. these hidden features of complex interventions are commonly observed within logic models. a key finding within this aspect of the review was that the theoretical concept “restorative effects of nature” was represented by the intervention components (but to a notably lesser extent than “the work” and “the farmer” components), but was not represented at all in the categories of mechanisms. this was somewhat surprising given that, informally at least, one of the most lauded attributes of care farming is its nature‐based approach. only four findings of the that mapped to the theoretical concept about mental well‐being could potentially relate to nature. we suggest that the absence or near absence of “the restorative effects of nature” is not a true absence; rather, nature is the essential platform which allows other more overt mechanisms to be acted out. thus, as individuals recall their experiences on the farm, it is primarily the mechanisms studies reported combined data for mental ill‐health and substance misuse so there is one logic model for both groups. of | murray et al. t a b l e r e su lt s o f p ri m a ry o u tc o m e s o u tc o m e s in st ru m e n t r e fe re n ce s tu d y d e si g n a n d sa m p le si ze t a rg e t g ro u p b a se li n e m e a n (s d ) f ir st fo ll o w ‐u p m e a n (s d ) s e co n d fo ll o w u p m e a n (s d ) r e su lt a s re p o rt e d b y a u th o rs e ff e ct si ze [ % c i] * s u m m a ry o f e ff e ct s d e p re ss io n t h e b e ck d e p re ss io n in v e n to ry b e rg e t e t a l. ( , ) r c t c f = ( a t fi rs t fo ll o w ‐u p ); co n tr o l= ( a t fi rs t fo ll o w ‐ u p ) m e n ta l il l‐ h e a lt h c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) t h e re w a s n o si g n if ic a n t ch a n g e in a n x ie ty b e tw e e n g ro u p s f ir st fo ll o w ‐u p : d = . [− . , . ]; se co n d fo ll o w ‐ u p : d = . [− . , . ] t h e re su lt s w e re n o t st a ti st ic a ll y si g n if ic a n t b e ck d e p re ss io n in v e n to ry p e d e rs e n e t a l. ( b ) r c t c f = c o : m e n ta l il l‐ h e a lt h c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) t h e re w a s n o si g n if ic a n t g ro u p d if fe re n ce a t a n y o f th e fo ll o w ‐u p s (f ( , / , ) = . , p = . ) d = . [− . , . ] t h e re su lt s w e re n o t st a ti st ic a ll y si g n if ic a n t b e ck d e p re ss io n in v e n to ry g o n za le z e t a l. ( a ) u b a n = m e n ta l il l‐ h e a lt h c o h o rt : . ( . ) c o h o rt : . ( . ) c o h o rt : . ( . ) c o h o rt : . ( . ) c o h o rt : . ( . ) c o h o rt : . ( . ) p o si ti v e si g n if ic a n t d if fe re n ce in d e p re ss io n in b o th co h o rt s a t fi rs t a n d se co n d fo ll o w ‐u p (f = . , p = . ; f = . p = . ) – – t h e p ro fi le o f m o o d s ta te q u e st io n n a ir e h in e e t a l. ( , b ) u b a n = m e n ta l il l‐ h e a lt h . ( . ) . ( . ) – t h e re w a s a p o si ti v e si g n if ic a n t d if fe re n ce in th e d e p re ss io n sc o re s (t ( ) = . , p < . ) – – a n x ie ty t h e s p ie lb e rg e r s ta te ‐t ra it a n x ie ty in v e n to ry b e rg e t e t a l. ( , ) r c t c f = ( a t fi rs t fo ll o w ‐u p ); co n tr o l= ( a t fi rs t fo ll o w ‐ u p ) m e n ta l il l‐ h e a lt h c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) n o si g n if ic a n t ch a n g e in a n x ie ty b e tw e e n g ro u p s a t fi rs t fo ll o w ‐u p b u t th e y fo u n d a st a ti ca ll y si g n if ic a n t p o si ti v e e ff e ct a t se co n d fo ll o w ‐u p f ir st fo ll o w ‐u p d = . [− . , . ]; se co n d fo ll o w ‐ u p : d = . [ . , ] t h e re su lt s w e re n o t st a ti st ic a ll y si g n if ic a n t a t fi rs t fo ll o w ‐u p . h o w e v e r, a t th e se co n d fo ll o w ‐u p th e re w a s a st a ti st ic a ll y si g n if ic a n t m e d iu m si ze p o si ti v e e ff e ct t h e s p ie lb e rg e r s ta te ‐t ra it a n x ie ty in v e n to ry ‐s ta te s u b sc a le p e d e rs e n e t a l. ( b ) r c t c f = c o : m e n ta l il l‐ h e a lt h c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) t h e re w a s n o si g n if ic a n t g ro u p d if fe re n ce a t a n y o f th e fo ll o w ‐u p s (f ( , / , ) = . , p = . ) d = . [− . , . ] t h e re su lt s w e re n o t st a ti st ic a ll y si g n if ic a n t t h e s ta te ‐t ra it a n x ie ty in v e n to ry ‐ s ta te s u b sc a le g o n za le z e t a l. ( b ) u b a n = m e n ta l il l‐ h e a lt h c o h o rt : . ( . ) c o h o rt : . ( . ) c o h o rt : . ( . ) c o h o rt : . ( . ) c o h o rt : . ( . ) c o h o rt : . ( . ) in b o th co h o rt s th e re w a s a p o si ti v e si g n if ic a n t d if fe re n ce a t fi rs t fo ll o w ‐u p (f = . , p = . ), b u t n o t si g n if ic a n t a t se co n d fo ll o w ‐u p (f = . , p = . ) – – q o l n o rw e g ia n v e rs io n o f q u a li ty o f l if e s ca le b e rg e t e t a l. ( , ) r c t c f = ( a t fi rs t fo ll o w ‐u p ); m e n ta l il l‐ h e a lt h c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) n o si g n if ic a n t ch a n g e in q u a li ty o f li fe b e tw e e n g ro u p s a t b o th fo ll o w ‐u p s f ir st fo ll o w ‐u p : d = . [− . , . ]; t h e re su lt s w e re n o t st a ti st ic a ll y si g n if ic a n t (c o n ti n u e s) murray et al. | of promoted through the work and the interactions with the farmer that are at the forefront. it is not clear exactly what individuals were asked about in the qualitative studies, but given that the aims were primarily about exploring the experience and benefits of care farming, more specific questioning about nature may not have been part of the topic guides. despite being able to develop the logic model for the disabilities client group, the lack of quantitative studies with this group meant that we could not map outcome data to the model. while more quantitative data was available for the substance misuse/mental illness groups and the disaffected youth logic models, very limited mapping of secondary outcomes was possible with the latter group. based on limited quantitative evidence from only two small rcts, we did not find sufficient evidence to conclude any significant positive effects of care farms in improving quality of life. we did find some limited and inconclusive evidence to suggest that care farming can reduce anxiety. for depression, while there appeared to be significant reductions following the intervention as assessed in uba studies, the rct found no significant differences between intervention and control groups, however the small sample size may have undermined the power of this study to detect a difference. for proximal/secondary outcomes, there were no significant positive effects for self‐efficacy and coping (measured in the rcts) at the end of the intervention. however, a significant improvement in self efficacy (but not coping) was reported at follow‐up. the possibility that there may be some delayed benefits (as with anxiety) for self‐efficacy requires confirmation by future studies. a number of ubas reported significant improvements in self‐esteem, stress, affect, mood and group cohesion at the end of the intervention. however, only stress and affect were measured at follow‐up ( months after the intervention ended), and improvements were not sustained. most of the primary and secondary or proximal outcomes were limited to immediately postintervention, with only three (social functioning, eating and appetite, and mental status) reported beyond months. with respect to disaffected youth, there was some suggestion that coping might be improved, but no impact identified on self‐esteem. . | overall completeness and applicability of evidence most of the studies were conducted within three european countries, in particular in the netherlands (n = ). this was followed by norway (n = ) and then the uk (n = ), with two studies in the united states and one study in pakistan. we know that other countries are active in care farming, particularly italy, germany, denmark, spain, sweden, and france, but it would appear that studies measuring health outcomes or exploring health aspects qualitative have not as yet been published in the academic or grey literate. important demographic information was missing from many of the studies so we cannot comment on the applicability of the evidence across, for example, different ethnic or socioeconomic groups. most of the studies reported sex disaggregated data. this highlighted that almostt a b l e (c o n ti n u e d ) o u tc o m e s in st ru m e n t r e fe re n ce s tu d y d e si g n a n d sa m p le si ze t a rg e t g ro u p b a se li n e m e a n (s d ) f ir st fo ll o w ‐u p m e a n (s d ) s e co n d fo ll o w u p m e a n (s d ) r e su lt a s re p o rt e d b y a u th o rs e ff e ct si ze [ % c i] * s u m m a ry o f e ff e ct s co n tr o l= ( a t fi rs t fo ll o w ‐ u p ) se co n d fo ll o w ‐ u p : d = . [− . , . ] w h o q o l ‐b ri e f e li n g s e t a l. ( ) c b a n = m e n ta l il l‐ h e a lt h n o t p ro v id e d n o t p ro v id e d n o t p ro v id e d a u th o rs re p o rt e d n o si g n if ic a n t ch a n g e in q u a li ty o f li fe b e tw e e n g ro u p s, a t fo ll o w ‐u p s in su ff ic ie n t in fo rm a ti o n to ca lc u la te e ff e ct si ze s – c o r e ‐o m h in e e t a l. ( ) u b a n = m e n ta l il l‐ h e a lt h n o t re p o rt e d n o t re p o rt e d – a u th o rs re p o rt th a t th e re w e re n o d if fe re n ce s in m e a n sc o re s b e tw e e n b e fo re a n d a ft e r th e in te rv e n ti o n – – e q ‐ d (v a s ) l a m b e rt ( ) u b a n = o th e r cl ie n t g ro u p s . . – t h e re w a s a . p o in ts im p ro v e m e n t in q u a li ty o f li fe fr o m b a se li n e to e n d o f th e in te rv e n ti o n fo r th e m ix e d cl ie n t g ro u p – – a b b re v ia ti o n : c b a , co n tr o ll e d b e fo re a n d a ft e r st u d y ; c f , ca re fa rm ; q o l , q u a li ty o f l if e ; r c t , ra n d o m is e d co n tr o ll e d tr ia l; u b a , u n co n tr o ll e d b e fo re a n d a ft e r st u d y ; v a s , v is u a l a n a lo g u e s ca le . of | murray et al. t a b l e r e su lt s o f p ro x im a l o u tc o m e s o u tc o m e s in st ru m e n t a n d d e fi n it io n r e fe re n ce s tu d y d e si g n a n d sa m p le si ze t a rg e t g ro u p b a se li n e m e a n (s d ) f ir st fo ll o w ‐ u p (p o st te st ) m e a n (s d ) s e co n d fo ll o w u p m e a n (s d ) r e su lt a s re p o rt e d b y a u th o rs e ff e ct si ze [ % c i] a s u m m a ry o f e ff e ct s m en ta l h ea lt h o u tc o m es s e lf ‐e ff ic a cy t h e g e n e ra li se d s e lf ‐ e ff ic a cy s ca le : a ss e ss a n in d iv id u a l’s o p ti m is ti c se lf ‐b e li e fs to re sp o n d to d if fi cu lt si tu a ti o n s in li fe p e d e rs e n e t a l. ( b ) r c t n = (c f = ; c o : ) m e n ta l il l‐h e a lt h c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) t h e re w a s n o si g n if ic a n t g ro u p d if fe re n ce a t a n y o f th e fo ll o w ‐u p s (f ( , / , )= . , p = . ) d = . [− . , . ] t h e re su lt s w e re n o t st a ti st ic a ll y si g n if ic a n t b e rg e t e t a l. ( ) r c t c f = ( a t fi rs t fo ll o w ‐ u p ); co n tr o l= ( a t fi rs t fo ll o w ‐u p ) m e n ta l il l‐h e a lt h c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . ( . ) s ta ti st ic a ll y si g n if ic a n t p o si ti v e im p ro v e m e n t fr o m b a se li n e to se co n d fo ll o w ‐u p in th e in te rv e n ti o n g ro u p (m d = . , t = . , p = . ) f ir st fo ll o w ‐u p : d = . [− . , . ]; se co n d fo ll o w ‐ u p : d = . [ . , . ] t h e re su lt s w e re n o t st a ti st ic a ll y si g n if ic a n t a t fi rs t fo ll o w ‐u p , b u t a t se co n d fo ll o w ‐u p th e re w a s a si g n if ic a n t e ff e ct s e lf ‐e st e e m r o se n b e rg s e lf e st e e m s ca le : m e a su re s a p e rs o n ’s se lf ‐w o rt h b y a ss e ss in g p o si ti v e a n d n e g a ti v e fe e li n g s a b o u t th e se lf h in e e t a l. ( , b ) u b a n = m e n ta l il l‐h e a lt h ; d ru g a n d a lc o h o l p ro b le m s; o ld e r p e o p le ; o ff e n d e rs . ( . ) . ( . ) – m e a n d if fe re n ce w a s . p o in ts (p < . ) – – h a ss in k e t a l. ( ) u b a n = d is a ff e ct e d / e x cl u d e d y o u th . ( . ) . ( ) – s ta ti st ic a ll y si g n if ic a n t p o si ti v e e ff e ct o n se lf ‐ e st e e m (m d = . , p < . ) – – s tr e ss t h e p e rc e iv e d s tr e ss s ca le : th e d e g re e to w h ic h si tu a ti o n s in o n e ’s li fe a re a p p ra is e d a s st re ss fu l g o n za le z e t a l. ( b ) u b a n = m e n ta l il l‐h e a lt h . ( . ) . ( . ) . ( . ) s ta ti st ic a ll y si g n if ic a n t re d u ct io n in st re ss a t fi rs t fo ll o w ‐u p (m d = . , p = . ) b u t th is w a s n o t m a in ta in e d a t se co n d fo ll o w ‐u p (m d = . , p = . ) – – c o p in g c o p in g s tr a te g ie s s ca le : m e a su re d co n tr o l a n d p la n n in g a b il it y in d a il y li fe (c o n tr o l co p in g ) a n d a ls o co p in g b y m e a n s o f so ci a l su p p o rt b e rg e t e t a l. ( ) r c t c f = ( a t fi rs t fo ll o w ‐ u p ); co n tr o l= ( a t fi rs t fo ll o w ‐u p ) m e n ta l il l‐h e a lt h c f : . ( . ) c o : . ( . ) c f : . ( . ) c o : . (s . ) c f : . ( . ) c o : . ( . ) a n o v a a n a ly si s re v e a le d n o tr e a tm e n t e ff e ct fo r a n y o f th e fo ll o w ‐u p p e ri o d s (f = . , p > . ) f ir st fo ll o w ‐u p : d = . [– . , . ]; se co n d fo ll o w ‐ u p : d = . [– . , . ] t h e re su lt s w e re n o t st a ti st ic a ll y si g n if ic a n t (c o n ti n u e s) murray et al. | of t a b l e (c o n ti n u e d ) o u tc o m e s in st ru m e n t a n d d e fi n it io n r e fe re n ce s tu d y d e si g n a n d sa m p le si ze t a rg e t g ro u p b a se li n e m e a n (s d ) f ir st fo ll o w ‐ u p (p o st te st ) m e a n (s d ) s e co n d fo ll o w u p m e a n (s d ) r e su lt a s re p o rt e d b y a u th o rs e ff e ct si ze [ % c i] a s u m m a ry o f e ff e ct s m o o d t h e p ro fi le o f m o o d s ta te q u e st io n n a ir e : m e a su re d a n g e r, co n fu si o n , d e p re ss io n , fa ti g u e , te n si o n a n d v ig o u r (t h e lo w e r th e sc o re , th e b e tt e r th e o v e ra ll m o o d ) h in e e t a l. ( , b ) u b a n = m e n ta l h e a lt h ; d ru g a n d a lc o h o l p ro b le m s; o ld e r p e o p le ; o ff e n d e rs . ( . ) . , ( . ) – a u th o r re p o rt e d a h ig h ly st a ti st ic a ll y si g n if ic a n t im p ro v e m e n t in p a rt ic ip a n ts ’ m o o d (t ( )= . , p < . ) – – m e n ta l st a tu s b ri e f p sy ch ia tr ic r a ti n g s ca le : th is in st ru m e n t is u se d to a ss e ss p sy ch o ti c d is o rd e rs , e sp e ci a ll y sc h iz o p h re n ia . d e cr e a si n g e ff e ct s su g g e st s th a t th e p a rt ic ip a n ts sy m p to m s a re im p ro v in g ja v e d e t a l. ( ) u b a n = m e n ta l il l‐h e a lt h ( . ) y r = ( . ) y r = ( . ) y r = . ( . ) s ig n if ic a n t im p ro v e m e n t (m d = . , p < . ) – – m e n ta l fu n ct io n in g m e n ta l h e a lt h in v e n to ry : m e a su re d a p e rs o n ’s m e n ta l st a tu s in cl u d in g a n x ie ty , d e p re ss io n , b e h a v io u ra l co n tr o l, p o si ti v e e ff e ct a n d g e n e ra l d is tr e ss e li n g s e t a l. ( ) c b a n = m e n ta l il l‐h e a lt h / d ru g a n d a lc o h o l p ro b le m s . ( . ) . ( . ) – m e n ta l fu n ct io n in g im p ro v e d sl ig h tl y (m d = ), h o w e v e r it w a s n o t st a ti st ic a ll y si g n if ic a n t in su ff ic ie n t in fo rm a ti o n to ca lc u la te e ff e ct si ze s – p o si ti v e a ff e ct p o si ti v e a n d n e g a ti v e a ff e ct s ca le :t h e e x te n t to w h ic h p a rt ic ip a n ts cu rr e n tl y e x p e ri e n ce d th e fo ll o w in g a ff e ct s: in te re st e d , e n th u si a st ic , in sp ir e d , p ro u d , a le rt , st ro n g a n d a ct iv e g o n za le z e t a l. ( a ) u b a n = m e n ta l il l‐h e a lt h . ( . ) . ( . ) . ( . ) s ta ti st ic a ll y si g n if ic a n t im p ro v e m e n t a t fi rs t fo ll o w ‐u p (m d = . , p = . ) b u t th is w a s n o t m a in ta in e d a t se co n d fo ll o w ‐u p (m d = . , p = . ) – – c o g n it iv e fu n ct io n in g m in i m e n ta l s ta te e x a m in a ti o n : m e a su re s a p e rs o n ’s m e n ta l im p a ir m e n t in cl u d in g m e m o ry , a tt e n ti o n a n d la n g u a g e d e b ru in ( ) c b a n = o ld e r p e o p le > w it h d e m e n ti a c f : . (m a le ) (f e m a le ) c o : (m a le ) . (f e m a le ) n o t p ro v id e d – a u th o rs st a te th a t th e re w a s n o si g n if ic a n t ch a n g e in co g n it iv e fu n ct io n in g a t ‐m o n th fo ll o w ‐u p in su ff ic ie n t in fo rm a ti o n to ca lc u la te e ff e ct si ze s – (c o n ti n u e s) of | murray et al. t a b l e (c o n ti n u e d ) o u tc o m e s in st ru m e n t a n d d e fi n it io n r e fe re n ce s tu d y d e si g n a n d sa m p le si ze t a rg e t g ro u p b a se li n e m e a n (s d ) f ir st fo ll o w ‐ u p (p o st te st ) m e a n (s d ) s e co n d fo ll o w u p m e a n (s d ) r e su lt a s re p o rt e d b y a u th o rs e ff e ct si ze [ % c i] a s u m m a ry o f e ff e ct s s e lf ‐ d e te rm in a ti o n ip c l o c s ca le (i n te rn a l lo cu s) h a ss in k e t a l. ( ) u b a n = d is a ff e ct e d y o u th . ( . ) . ( . ) – t h e re w a s n o st a ti st ic a ll y si g n if ic a n t d if fe re n ce (m d = − . ) – – so ci a l o u tc o m es s o ci a l fu n ct io n in g t h e s o ci a l f u n ct io n in g s ca le : m e a su re d so ci a l e n g a g e m e n t, in te rp e rs o n a l co m m u n ic a ti o n , in d e p e n d e n ce a n d co m p e te n ce e li n g s e t a l. ( ) c b a n = m e n ta l il l‐h e a lt h / d ru g a n d a lc o h o l p ro b le m s n o t p ro v id e d n o t p ro v id e d – a u th o rs re p o rt th a t th e re w a s n o e ff e ct o n so ci a l fu n ct io n in g b e tw e e n th e tw o g ro u p s in su ff ic ie n t in fo rm a ti o n to ca lc u la te e ff e ct si ze s – g ro u p co h e si o n t h e t h e ra p e u ti c f a ct o rs in v e n to ry c o h e si v e n e ss s ca le : m e a su re d a p e rs o n ’s se n se o f b e lo n g in g to th e g ro u p a n d e x p e ri e n ce o f a cc e p ta n ce , tr u st , a n d g ro u p co o p e ra ti o n g o n za le z e t a l. ( a , b ) u b a n = m e n ta l il l‐h e a lt h . ( . ) . ( . ) – a u th o rs fo u n d th a t g ro u p co h e si o n im p ro v e d (f = . , p = . ) – – r e o ff e n d in g t h e n u m b e r o f n e w co n v ic ti o n s m a rs h a ll a n d w a k e h a m ( ) u b a n = o ff e n d e rs – – – % re d u ct io n in o ff e n d in g – – p ro b le m b e h a v io u r in te rn a li si n g p ro b le m s, a n x ie ty /d e p re ss io n , re se rv e d , e x te rn a li si n g p ro b le m s a n d d e li n q u e n t b e h a v io u r h a ss in k e t a l. ( ) u b a n = d is a ff e ct e d y o u th . ( . ) . ( . ) – t h e a u th o rs re p o rt e d si g n if ic a n t, p o si ti v e e ff e ct o n p ro b le m b e h a v io u rs a t ‐m o n th fo ll o w ‐u p (m d = . , p < . ) – – p h ys ic a l o u tc o m es f u n ct io n a l p e rf o rm a n ce t h e b a rt h e l in d e x : a n in d iv id u a l’s d e p e n d e n ce o n a ca re g iv e r d e b ru in e t a l. ( ) c b a n = o ld e r p e o p le > w it h d e m e n ti a c h a n g e o v e r m o n th s— m d c o h o rt : c f : . ( . ) c o : . ( . ); – – t h e a u th o rs re p o rt e d n o si g n if ic a n t ch a n g e in fu n ct io n a l p e rf o rm a n ce b e tw e e n g ro u p s in su ff ic ie n t in fo rm a ti o n to ca lc u la te e ff e ct si ze s – (c o n ti n u e s) murray et al. | of t a b l e (c o n ti n u e d ) o u tc o m e s in st ru m e n t a n d d e fi n it io n r e fe re n ce s tu d y d e si g n a n d sa m p le si ze t a rg e t g ro u p b a se li n e m e a n (s d ) f ir st fo ll o w ‐ u p (p o st te st ) m e a n (s d ) s e co n d fo ll o w u p m e a n (s d ) r e su lt a s re p o rt e d b y a u th o rs e ff e ct si ze [ % c i] a s u m m a ry o f e ff e ct s c o h o rt : c f : ( . ) c o : ( . ) c o h o rt : c f : . ( . ) c o : . ( . ) a p p e ti te a n d e a ti n g p a tt e rn s im p li fi e d n u tr it io n a l a p p e ti te q u e st io n n a ir e : m e a su re s a n in d iv id u a l’s d ie ta ry in ta k e a n d p re d ic ts w e ig h t lo ss e li n g s e t a l. ( ) c b a n = m e n ta l il l‐h e a lt h / d ru g a n d a lc o h o l p ro b le m s n o t p ro v id e d n o t p ro v id e d – a u th o rs re p o rt th a t n o d if fe re n ce s in a p p e ti te a n d e a ti n g p a tt e rn s b e tw e e n g ro u p s in su ff ic ie n t in fo rm a ti o n to ca lc u la te e ff e ct si ze s – m e d ic a ti o n u sa g e p ro v id e d b y th e c e n tr a l in d ic a ti o n c o m m it te e fo r c a re d e b ru in e t a l. ( ) c b a n = o ld e r p e o p le > w it h d e m e n ti a c h a n g e o v e r m o n th s— m d c o h o rt c f : . ( . ); c o . ( . ) c o h o rt c f . ( . ) c o . ( . ) c o h o rt c f : . ( . ) c o : . ( . ) – – t h e a u th o rs re p o rt e d n o si g n if ic a n t ch a n g e in m e d ic a ti o n u se in su ff ic ie n t in fo rm a ti o n to ca lc u la te e ff e ct si ze s – r e h a b il it a ti o n m o rn in g si d e r e h a b il it a ti o n s ta tu s s ca le : a ss e ss th e fu n ct io n in g o f a p e rs o n , in cl u d in g : in d e p e n d e n ce / d e p e n d e n ce , a ct iv it y / in a ct iv it y , so ci a l in te g ra ti o n /i so la ti o n a n d e ff e ct o f cu rr e n t sy m p to m s o n li fe st y le s ja v e d e t a l. ( ) c b a ‐c h e ck u b a n = m e n ta l il l‐h e a lt h . (s d , . ) y r = . ( . ) y r = ( . ) y r = . ( . ) t h e a u th o rs re p o rt e d a st a ti st ic a ll y si g n if ic a n t im p ro v e m e n t in re h a b il it a ti o n – – a b b re v ia ti o n s: a n o v a , a n a ly si s o f v a ri a n ce ; c b a , co n tr o ll e d b e fo re a n d a ft e r st u d y ; c f , ca re fa rm ; ip c l o c , in te rn a l p o w e rf u l o th e rs a n d c h a n ce l o cu s o f c o n tr o l s ca le ; q o l , q u a li ty o f l if e ; r c t , ra n d o m is e d co n tr o ll e d tr ia l; u b a , u n co n tr o ll e d b e fo re a n d a ft e r st u d y ; v a s , v is u a l a n a lo g u e s ca le . a e ff e ct si ze s w e re ca lc u la te d u si n g a g g re g a te d a ta p ro v id e d in th e o ri g in a l a rt ic le w h e n p o ss ib le . of | murray et al. double the number of males participated compared to females. it is likely that this reflects what is seen in practice, given that the age ranges of people and the range of client groups in the studies were similar to that seen in practice in the uk at least (bragg et al., ). most of the studies focused on care farming for mental health problems, with fewer for disaffected youth and older people, and no quantitative studies for people with learning disabilities/autistic spectrum disorder. in the uk, more care farms support people with learning disabilities/asd than any other client group. within studies that explored the effectiveness of care farms for people with mental health problems, there was a range of conditions (including anxiety, depression, personality disorder, schizophrenia), and because of small sample sizes it was not possible to say which conditions within this realm would derive most benefit from care farming interventions. generally in the uk, care farming is for individuals with mild to moderate depression with only a minority specialising in more severe conditions. with respect to this client group, therefore, the research may not reflect usual practice. one of our aims was to create logic models to describe how care farms may work for different client groups. this was only possible for the mental health problems and/or substance misuse group, disaffected youth and, to a lesser extent, people with learning disabilities. the identified theories included those that attempted to integrate care farming with a particular condition or issue such as the recovery model for mental health problems and the shift model for offending. however, there were other theories that discussed, for example, nature or social support without reference to issues that arise in particular client groups. having a more integrated theory provided more guidance on expected (proximal and endpoint) outcomes which when combined with outcomes derived from the qualitative literature allowed for a more comprehensive logic model. this was the case with the mental health problems logic model. while there was a reasonable body of qualitative evidence relating to mechanisms for disaffected youth, findings on proximal or endpoint outcomes were very limited, with only two found. only one theory (attachment theory) (bowlby, ) was specifically men- tioned in relation to adolescents and applied within an excluded overview about animal assisted therapy (geist, ). this did suggest a theoretical relationship between early years parental attachment and socioemotional and behavioural outcomes, but it is not clear if this theory fits better with the behavioural disturbances to disaffected youth (i.e., a delinquency type behaviour) or to a more emotional disorder. overall there was little quantitative evidence so our testing of the logic models was limited to mapping quantitative results, as presented in the papers, to the identified outcome measures. this is partly due to the fact that in all quantitative studies with mixed client groups, outcomes were not reported separately. this meant that only limited information on client groups other than those with mental illness was available to be mapped to the logic models. of particular note was the lack of rcts, particularly any well‐designed and appropriately powered. this is unsurprising—the third sector, in which care farming resides, presents many methodological and logistical challenges to carrying out this type of research. it may be that natural experiments may prove a valuable design in this context, however, no such studies were found in this review. even cbas, which are less demanding in terms of resources and methods, but not as rigorous as rcts, were few in number. thus, much of mapping of outcomes relied on highly biased uncontrolled studies. . | quality of the evidence . . | qualitative studies more than half of the qualitative studies met < % of the quality assessment criteria and only two met more than % of the criteria. studies performed well in relation to clarity about the area of study, number of interviews performed, and the provision of clear themes and quotes supporting their findings. however, areas that were poorly addressed include the provision of details about relationships between the researcher and the interviewees. although this type of research involves very vulnerable client groups, only one study demonstrated evidence that they had sought to embed themselves in the setting prior to data collection, to foster a trusting relationship that would facilitate a more in‐depth research data collection. likewise, standard good practice of obtaining informed consent and ethical approvals was only reported in six studies. although not specifically a quality criterion, we observed a clear connection between study quality and the use of contextual theories to guide the research question and analysis. those that used a theory much more often met more of the quality criteria. again, provision of basic demographic data (age and gender), which was also not a specific quality criterion, was often absent in studies. six of the qualitative studies were not published in academic journals and missed the opportunity for rigorous external peer‐reviewing. some were locally commissioned without the intention of publishing in a journal and this may explain the lack of good quality reporting. in the qualitative studies, the vast majority of themes did not separate the experiences of different client groups. . . | quantitative studies there was much heterogeneity across the studies in terms of the client groups, duration and intensity of the intervention, outcomes and outcome tools, periods of follow‐up and overarching study design; hence, we were unable to conduct a meta‐analysis. heterogeneity was also observed in the outcomes and measures applied in the quantitative studies. twenty three different outcomes were measured over studies, probably reflecting the range of client groups and the varied way in which care farms might be considered to impact on lives. quality was also compromised by the use of unvalidated outcomes within a number of studies. the majority of quantitative studies in general did not offer a theoretical basis or even suggest a mechanism by which the intervention might work, questioning the basis of decisions on types of outcomes. most of the quantitative evidence was derived from uba studies, which do not control for threats to internal validity and thus causal murray et al. | of inferences cannot be made from these studies. furthermore, most of the outcome data were restricted to immediately after the interven- tion, potentially offering inadequate latency for observed effects. only three outcomes were reported at months, and a further three for months and beyond. all of the quantitative studies had a high risk of bias. in the two rcts, three and four of the seven quality assessment domains were unclear. studies did not demonstrate any evidence of bias in the selection of outcomes reported, and all data on attrition was reported. however, neither study blinded outcome measurement, and one of the two studies lacked clarity about potential contamina- tion between the groups and about differences in baseline characteristics. furthermore, in one study the differences in baseline outcomes were not adjusted for in the analysis. similarly all other cba and uba studies were found to be at high risk of bias. in particular, only one study reported data on attrition. as with the qualitative studies, six (one cba and five uba) of the quantitative studies (including the mixed methods study in the total) were reports that were not published in a peer‐reviewed journal, and therefore were not subjected to the rigors of an external review processes. in general, samples sizes across most of the studies were small and so were likely underpowered, thus increasing the risk of type ii error. . | limitations and potential biases in the review process we used a comprehensive search strategy, which we believe identified all published studies of care farms. we supplemented our electronic search by asking research collaborators across europe to identify relevant networks, other colleagues and websites for unpublished reports. in addition, care farming uk emailed all care farms in the uk for any unpublished reports. we found one phd thesis and subsequently found the published paper relating to this. we found articles via our grey literature retrieval methods. this was not unexpected—care farms often fall within the third sector, so we anticipated that many evaluations would be conducted for the purposes of obtaining funding, and therefore would remain unpub- lished. we used multiple reviewers and rigorous approaches during all key stages of the review. with respect to testing our model for the disaffected youth group, we observed that the measured outcomes did not necessarily reflect the supporting theory or the qualitative evidence. one way to address this might have been to extract information from the introduction of the studies to identify expected outcomes, but this was not an anticipated finding, and therefore was not built into the methods. likewise, in reviewing the identified theories we only explored those theories that had been mentioned in connection with care farming. the main aim of the review was to look at the effectiveness of care farming for improving quality of life, and secondarily to understand how care farms might work for different client groups. a more detailed critique of the theories of change for each individual client group and an understanding of how they could inform care farming would fit with a more realist approach. although we ordered the categories of mechanisms according to frequency and spread of findings across the studies for each of the different client groups, we recognise that this does not necessarily represent levels of importance for individuals. furthermore, it is possible that with more interview data or the use of different theoretical frameworks to inform the qualitative research, the order of mechanisms might change. we would suggest, however, that even across studies that used different theoretical frameworks, the same types of findings were reported, suggesting that despite a research- er’s agenda, service users still pursue issues that are important to them individually. the categorisation of qualitative mechanisms might be open to bias; however, we mitigated this possibility by using multiple reviewers and conducting several iterations, checking back to the papers to ensure that categorisation remained true to the original meaning and context of the finding. additionally, during the initial clustering process, we reminded reviewers to take the findings at face value and not to over interpret them; thus, again remaining close to the paper’s original meaning. with respect to understanding the components of complex interventions and developing logic models to explain their mechanisms, we consider this method to be transparent and replicable, particularly in the absence of any gold standard. . | agreements and disagreements with other studies or reviews we only know of one other published review that has specifically targeted care farming as an intervention for people with mental health problems (iancu et al., ), which included five studies, three of which were rcts. one of the rcts was excluded from our review because the intervention was horticulture therapy delivered by a health care professional, rather than therapeutic horticulture delivered by a care farmer (kam & siu, ). the other uba study (cerino, cirulli, chiarotti, & seripa, ) was not found by our search, but would not have met our eligibility criteria, being a single activity (therapeutic horse riding). overall, for the included studies, the reviews are in agreement in so far as quality, scope of outcomes and findings. we agree with iancu’s ( ) view that care farming as a work‐based intervention should be evaluated as a form of vocational rehabilitation, and yet as a robust measure this is lacking from the studies. iancu ( ) also found three key qualitative themes from three studies relating to disability (distraction, stress release and participation), recovery (viewing the self differently and being socially included), and specific farm experiences (absorption in work and connecting with nature). our synthesis was more in‐depth and involved more studies but we did find the themes to which iancu ( ) refers. other reviews (one systematic and the other a simple literature review) with a broader nature‐based remit (annerstedt & währborg, ; bragg & atkins, ), and also with a narrow but overlapping focus on conservation or horticulture therapy and gardening, exist of | murray et al. (clatworthy, hinds, & camic, ; kamioka et al., ; lovell, husk, cooper, stahl‐timmins, & garside, ). one of the broader reviews, involving papers, included nature‐assisted interventions, wilderness and horticulture therapies, but not care farms, and focused on a wide range of vulnerable groups (annerstedt & währborg, ), but mostly related to disaffected youth, and those with mental health problems or dementia. the main difference here is the application of a “therapy”, implying the delivery of an intervention by a professional (often health‐based), rather than offering an intervention that is “therapeutic”, as is the case with our review. some of the studies also included an additional therapeutic component such as psychotherapy or cooking activities, mostly for participants with addiction problems. the contribution of the nature element in these interventions is unclear. as with our review, the authors found that the quality of the studies was mostly low, with often small sample sizes and short term follow‐up (at the end of the intervention). however, most studies reported finding positive outcomes, and the authors conclude that there is a small body of evidence to support the use of nature‐assisted therapies for a range of conditions and social circumstances. the second broad literature review looked at social and therapeutic horticulture, care farming and environmental conservation (bragg & atkins, ). these interventions were separately covered by the other reviews so are not discussed here. the systematic review on conservation involved volunteers, so did not specifically address impacts of nature‐based interventions on vulnerable populations. the review on horticulture therapy (an intervention that can be included within care farming) included four rcts involving people with dementia, severe mental illness such as schizophrenia, bipolar disorder, and major depression, as well as frail elderly people in nursing homes and hemiplegic patients after stroke. as with all the reviews reported here, including our own, meta‐analysis was not possible due to heterogeneity in outcomes and across the interventions. again, the studies were found to be of low quality, but overall there was evidence of effectiveness for improved mental health and behavioural outcomes. | authors’ conclusions . | implications for practice and policy by far the most studied client group in care farming research is people with mental health problems. in the uk currently, there are more care farms providing support for people with learning difficulties ( % of farms) and asd ( % of farms) than there are for those with mental health problems ( %) (bragg et al., ). however, only four of the qualitative studies explored the experience of care farming for learning disabilities and autistic spectrum disorder. similarly, disaffected youth who are supported by around % of uk care farms (bragg et al., ) were again the focus of only four studies, with two being quantitative. reasons for the intense research interest in mental health problems above other client groups likely reflect a growing concern about increasing mental health problems in modern society (murray et al., ), a lack of choice and availability of treatment options (mind, ) and the impact on the economy through benefit support, absenteeism and unemployment (centre for mental health, ). although the use of nature to support recovery from a range of mental health conditions is not new, the way it is used has evolved over time. once an adjunct to institutional psychiatric care, it has become part of a community‐based multifunctional “green care” service. however, the evidence for nature as a mental health “treatment option” has not evolved at the same rate as for other more medical approaches. only recently, through the application of social prescribing, have health care providers and commissioners started to translate the longstanding knowledge that many mental health problems are underpinned by social circumstance (marmot et al., ) and begun to commission services that provide social interventions (crd, ). yet even within this approach, green care services are used relatively infrequently when compared to traditional approaches (bragg & leck, ). given that, in the uk at least, care farms are underutilized relative to the spaces available on the farms’ structured programmes (bragg et al., ), lack of capacity across the broader green care service is not the issue. lack of access may contribute specifically within more urban areas with fewer green spaces, higher deprivation and lack of transport. lack of understanding and awareness is however likely to be a major factor. in countries such as norway, sweden and the netherlands, where care farming is well‐ established and research is most active, there is greater integration with statutory services (elsen and finuola, ). in the north and republic of ireland there has been an active push to market care farming directly to commissioners combined with the establishment of a network of farms supported by eu funding (social farming across borders, ), and this could be an option in areas where engagement has been low. in addition, in other countries access to care farming has been written into their constitution (https://www. cliclavoro.gov.it/normative/legge_ _agosto_ n. ). however, the need to communicate how care farms work and who they are appropriate for is needed in the uk, where healthcare commissioners lack awareness and understanding about care farming and who might benefit (bragg, egginton‐metters, leck, & wood, ), but this is just one side of the problem. in addition to securing funding through commissioners, there is the dual task of commu- nicating directly to frontline providers, specifically primary care staff and social prescribing facilitators, who have the role of identifying interventions for patients with complex social needs that present as mental health problems. here, the skill is matching needs to service response, and while some interventions have a clear fit (e.g., debt services, housing support and relationship counselling), others, particularly care farming, may be more challenging to place. there is also a lack of awareness and understanding from patients as to the potential benefits of green care, including care farms, and so as a client‐led approach, green interventions may not be a considered an option. having developed a theoretical framework and a set of logic models to describe potential mechanisms behind care farming, we now have a basis upon which to inform health and social care murray et al. | of https://www.cliclavoro.gov.it/normative/legge_ _agosto_ https://www.cliclavoro.gov.it/normative/legge_ _agosto_ commissioners how care farms may work theoretically and for whom they might be suitable. the studies included in the review had twice as many male as female participants. reports on the care farming sector in the uk (bragg et al., ) indicate that this is a reflection of the use of care farms by men and women. this preference for care farming by men is of interest to commissioners of mental health services. there is a gender inequality in utilisation of mental health services, where usage is much higher among females (health and social care information centre, ). it may be that green care interventions are perceived by men to be a less intrusive, and therefore a more acceptable form of support. findings from the qualitative studies included in this review would seem to support this, where service users refer to the benefits of not forcing early social interactions, where conversations centre on work rather than illness, and where distraction is welcome. this may mean that care farms may be preferred by those wanting less intense personal interventions to improve their mental health. in regards to “treatment” costs and duration of the intervention, studies included in the current review suggested an intervention duration (averaging around weeks) that is representative of practice and comparable with talking therapies. although not considered in the current review, the costs of talking therapies are also not dissimilar to care farming (bragg et al., ; mind, ). there is a need to identify a wider range of interventions to address mental ill‐health and allow tailoring to individuals’ personal treat- ment needs. providing a greater range of intervention options, such as care farming, would provide choice where there is currently little on offer and has the potential to reduce waiting lists for talking therapies (mind, ). furthermore, it could help redress gender inequalities in terms of accessing support for mental health problems. further studies are needed to explore the effectiveness of alternative mental health interventions, such as care farming, with exploration of who they may work for and how. for the other client groups, the implications for policy and practice from this review are limited. disaffected youth, particularly those at risk of exclusion from school, potentially represent those most likely to offend, are more likely to have future mental and physical health problems and fewer employment prospects (parker et al., ). care farms could potentially offer an alternative form of education with qualified educators supporting the delivery of qualifications such as open college network qualifications (bragg et al., ). while this review did not search specifically for cf studies with educational outcomes, in those studies included here none had measured educational outcomes alongside health out- comes. understanding the impacts on young people’s education, behaviour and any inter‐relationships with health would be a valuable future area for study. the european studies included in the review indicate that systems appear to be in place that allow people with learning disabilities to access green care where it is wanted, or where it is accessible, with funding often provided through local authority personal budgets. it is interesting that people with learning disabilities is the largest client group attending care farms in the uk, but the question of benefit accrued has not been explored in great depth. it is unclear whether individual carers who are in pursuit of support actively seek out organisations such as care farms or whether local authorities are more informed about services available in the community. regardless, there appears to be a working mechanism that enables those with learning disabilities to have the opportunity to benefit socially and physically from farm work, and this seems to be supported by the qualitative literature. the most recent patient group to engage with care farms is people with dementia. although we found little research, we are aware of a number of programmes throughout the uk that are starting to engage people with dementia in nature‐based activities. as part of the king’s fund enhancing the healing environment initiative, a selection of uk hospitals have been working to increase contact with nature (http://www.kingsfund.org.uk/projects/ enhancing‐healing‐environment), based on the premise that agitation and number of falls can be reduced. stepney city farm’s furry tails initiative in london has also recently been involved in piloting a scheme to deliver animal handling sessions in an attempt to reduce social isolation in older people and in those with dementia (http:// furry‐tales.org.uk/). there are also opportunities within social prescribing schemes to refer older people experiencing social isolation and those with perhaps the earlier stages of dementia to attend care farms, but as with mental health problems, the benefits are yet to be demonstrated. . | implications for research contextual descriptions revealed a wide range of activities provided for service users on care farms (see table ); however, there was insufficient information to establish whether effects differed accord- ing to these. information was not sufficiently detailed to allow us to determine client specific activities, although logic dictates that some more vulnerable and less independent service user groups are less likely to be involved in heavy traditional farming activities that contribute to productivity. knowledge about this is important for helping to understand the ways in which care farming might work for different client groups; this is clearly of value to commissioners and other funders of care farms. we know from the qualitative studies that there might be some differences in the intervention components as interpreted by the service users and that there may be differences in the mechanisms of change, but because many studies include mixed client groups and failed to report separate themes, we have limited information. care farming research has become an active field in recent years; however, well designed studies are still lacking. there is some evidence, albeit inconsistent, that as a theoretically underpinned intervention, care farming might improve mental health outcomes. the need for a robust evidence base seems most urgent in the mental health field where there is growing concern about the increasing individual and economic burden that mental illness imposes and the limited range of interventions available (centre for mental health, of | murray et al. http://www.kingsfund.org.uk/projects/enhancing-healing-environment http://www.kingsfund.org.uk/projects/enhancing-healing-environment http://furry-tales.org.uk/ http://furry-tales.org.uk/ ). to progress the evidence, the quality of the research needs to improve. our review highlighted how different population groups experi- ence and may benefit from care farms differently. going forward, research studies should collate data on single population groups so as to provide answers to health and social care commissioners who tend to commission services for specific client groups. we recognise that for care farms, working with only one single population group or not combining groups in activities may be challenging and impractical. however, research can be designed to build the evidence base relevant to different population groups. evidence on the impact on health is particularly important to the care farming sector as well as health commissioners. often situated in the third sector, care farms balance income from a range of sources, including grants from charities and private organisations, revenue from selling farm produce, but an important source of income for many care farms in europe is through funding from public health and social care. thus demonstrating their contribution to health and social outcomes to secure one of their potentially long term funding sources is important. one of the aims of this review was to understand how care farming worked for these different client groups. we have observed some differences across the groups with “achievement and satisfac- tion” and “feeling safe” being potentially more or less important in some groups compared to others. how these convert or contribute to outcomes is unclear, and indeed the general conversion of mechan- isms to outcomes is an invisible part of all logic models. what we can glean from these logic models is a sense of which outcomes might be most appropriate for which client group. the mental illness/ substance misuse logic model provided the most obvious path from theory to mechanisms and then to outcomes. however, vocational rehabilitation was not adequately addressed and only “work ability” (lambert, ) was measured, but without adequate clarity about its reliability. returning to work/taking up work could offer important individual financial and well‐being gains, but also, from an economic perspective, can potentially reduce the burden on society from a reduction in health service utilisation and benefits; however, included studies lacked data on these outcomes. this is an area in which commissioners are becoming increasingly interested, so care farming research needs to demonstrate its impact more broadly. more reliable and objective proxy measures for returning to work would be of interest. in addition to broadening its impact in line with anticipated outcomes that fit with explanatory theories, longer‐term follow‐ups beyond months are required. there was some indication that positive outcomes, such as improvements in anxiety and self‐ efficacy, may take time to manifest, but this needs to be confirmed. for disaffected youth, the path from theory to outcomes was not followed, as measured outcomes did not adequately fit with the model. we would suggest that care farming interventions involving disaffected youth use these models to determine the most appro- priate outcomes. the disaffected youth client group was the only one to report findings relating to “reflection”. children at risk of exclusion from school are at high risk of entering into an adult criminal lifestyle (audit commission, ), and desistance theory suggests that a period of reflection is a critical early step in the rehabilitation of offenders (cusson & pinsonneault, ; farrall & bowling, ), but only if it is supported with interventions that take them beyond this. in this respect, care farming may have the capacity to rehabilitate young people who are at risk of committing offences later in life. in line with this, the other category of mechanism that was present in this client group but not the mental health problems group was “creating a new identity” which again fits with desistance theory. this category was also found in the learning disabilities group and related more to how this client group envisaged themselves as a farmer. studies included in the current review used a wide range of measures and concurs with the findings from a previous review of care farming interventions (iancu et al., ). in an area of research where individual studies tend to be underpowered, there is a greater need to be able to combine findings in a meta‐analysis. in the current review, the most commonly applied mental health outcome measures were the beck depression inventory (beck et al., ) and the state‐trait anxiety inventory (spielberger, ), both of which appear to be acceptable to the population group. more fundamentally, this review identified a number of small scale evaluations which used tools that had not undergone psychometric evaluation. we would suggest that researchers select existing reliable and validated tools. adopting robust study designs must be matched with capacity to undertake the research, and this is where care farming studies may need to compromise. a lack of service infrastructure across the care farming sector and peripheral relationships with statutory services means that methodically robust large rcts are very difficult to perform, particularly where income for the intervention is not guaranteed and single client groups at individual farms are quite small in number. in the absence of available studies where data can be combined, larger studies that involve multiple care farms, possibly operating in a network, are an option. these would ideally require agreed standardised criteria for referrals across multiple healthcare organisations. in general, we recommend that a more cohesive approach to care farming research be adopted. this means understanding the needs of commissioners and thinking beyond individual cf research studies. green care has potentially much to offer, but currently cannot prove its worth until more robust methodologies and strategically aligned research are conducted. acknowledgements we wish to thank those that assisted us with translating foreign language articles. these include jane dennis (the campbell collaboration); ms emma sydenham (cochrane injuries group, london); charlotte hoppe (plant research international, wagenin- gen university) and bart posdijk (freelance dutch translator). we also would like to thank care farming uk who emailed all uk care farms on our behalf. murray et al. | of roles and responsibilities • content: j. m., n. w., h. e., r. b., m. e. and m. g. l. • systematic review methods: j. m., n. w., and h.e. • information retrieval: j. w. and t. v. • manuscript preparation: j. m., n. w., h. e., r. b., m. e., m. g. l., c. b., z. r., j. c., d. s. and s. t. plans for updating the review there are no plans to update this review. sources of support this review was funded as part of an national institute for health research public health research programme (nihr phr) (grant project no.: / / ). declarations of interest dr. rachel bragg has produced a number of reviews on the topic. these are discussed in the review. references references to included studies anderson, k. a., chapin, k. p., reimer, z., & siffri, g. 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( ). biophilia. cambridge: harvard university press. wilson, d. b., (n.d.). practical meta‐analysis effect size calculator [online calculator]. retrieved month day, year, from https://www. campbellcollaboration.org/research‐resources/research‐for‐resources/ effect‐size‐calculator.html supporting information additional supporting information may be found online in the supporting information section. how to cite this article: murray j, wickramasekera n, elings m, et al. the impact of care farms on quality of life, depression and anxiety among different population groups: a systematic review. campbell systematic reviews. ; :e . https://doi.org/ . /cl . murray et al. | of http://www.lancaster.ac.uk/shm/research/nssr/research/dissemination/publications/ns_synthesis_guidance_v .pdf http://www.lancaster.ac.uk/shm/research/nssr/research/dissemination/publications/ns_synthesis_guidance_v .pdf http://www.lancaster.ac.uk/shm/research/nssr/research/dissemination/publications/ns_synthesis_guidance_v .pdf https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/ /review _neets_health_inequalities.pdf https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/ /review _neets_health_inequalities.pdf https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/ /review _neets_health_inequalities.pdf http://www.socialfarmingacrossborders.org/ http://www.socialfarmingacrossborders.org/ http://www.groenezorg.be/portals/ /docs/jaarverslag% sgz% .pdf http://www.groenezorg.be/portals/ /docs/jaarverslag% sgz% .pdf https://doi.org/ . /intqhc/mzm http://www.sccjr.ac.uk/wp-content/uploads/ / /giving_up_crime_tcm - .pdf http://www.sccjr.ac.uk/wp-content/uploads/ / /giving_up_crime_tcm - .pdf https://www.campbellcollaboration.org/research-resources/research-for-resources/effect-size-calculator.html https://www.campbellcollaboration.org/research-resources/research-for-resources/effect-size-calculator.html https://www.campbellcollaboration.org/research-resources/research-for-resources/effect-size-calculator.html https://doi.org/ . /cl . scientific abstracts significantly (p< . ) higher in dm/pm (n= , . %) with respect to controls (n= , , . %). concerning prognosis, ana positivity in pm/dm was associated with a better prognosis for all cancers (or . [ % . - . ], p= . ). for individual cancer types; thyroid cancer (or . [ % . - . ], p= . ), gastric cancer (or . [ % . - . ], p= . ), kidney cancer (or . [ % . - . ], p= . ), acute leukaemia (or . [ % . - . ], p= . ), non-hodgkin’s lymphoma (or . [ % . - . ], p= . ), but not for mye- lodysplastic syndrome. the main cancers linked to pm/dm were thyroid cancer (or . [ %ci . - . ]), gastric cancer (or . [ %ci . - . ]), kidney cancer (or . [ %ci . - . ], p= . ), and myelodysplastic syndrome (or . [ %ci . - . ], p= . ). regarding gastric cancer, positivity for anti-rnp (or . [ %ci . to . ], p< . ), anti-ssa (or . [ %ci . to . ], p< . ), and anti-jo (or . [ %ci . to . ], p< . ) was associ- ated with a higher risk of cancer development. conclusion: ana positivity is an independent predictor of favorable prognosis in pm/dm patients with cancer, possibly suggesting that cancer directed humoral autoimmunity may have some benefit. therefore, humoral autoimmunity in ssc and pm/dm is a broad mechanism that confers a survival advantage and is rel- evant for disease understanding and elucidating optimal anti tumoural immunity in the current age of cancer immunotherapy. references: [ ] watad a, mcgonagle d, bragazzi nl, tiosano s, comaneshter d, shoenfeld y, cohen ad, amital h. autoantibody status in systemic sclerosis patients defines both cancer risk and survival with ana negativity in cases with concomitant cancer having a worse survival. oncoimmunology. mar ; ( ):e . disclosure of interests: abdulla watad: none declared, dennis mcgonagle grant/research support from: janssen research & development, llc, merav lidar: none declared, nicola luigi bragazzi: none declared, doron coman- esther: none declared, arnon cohen: none declared, howard amital: none declared doi: . /annrheumdis- -eular. op chromatin conformation signature analysis in early vs late scleroderma phenotypes m. galloway , e. hunter , a. akoulitchev , s. vigneswaran , b. abdi , c. denton , d. abraham , r. stratton . ucl division of medicine royal free campus, centre for rheumatology and connective tissue diseases, london, united kingdom; oxford biodynamics plc, oxford, united kingdom background: systemic sclerosis (scleroderma, ssc) is a heterogeneous dis- ease in which clinical outcomes vary widely. predicting outcomes on an indi- vidual basis remains challenging despite progress made through autoantibody analysis and gene expression profiling. effective targeted therapies are evolving and accurately predicting outcomes is important to enable patient stratification for therapy. chromatin conformation signature (ccs) profiling of peripheral blood for sys- temic epigenetic deregulations could be used for such a purpose. the episwitch platform offering high throughput and resolution chromosome conformation ( c) capture detects significant regulatory changes in d genome architecture and maps long range interaction between distant genomic locations. this then reveals the spatial disposition and physical properties of the chromosome, such as chromatin loops and inter-chromosomal connections, which have a role in net- work organization and genetic epistasis controlling gene expression. episwitch automated platform has been successfully utilised in patient stratification in ra, ms and other indications. this methodology could be applied to patients with ssc to identify ccs associ- ated with different phenotypes and may ultimately be used to stratify and identify patients into pathogenic subtypes. objectives: we aimed to determine significant ccss associated with early and late phenotypes of ssc. methods: the episwitch-based chromosome conformation capture ( c) method was applied to blood samples from early phenotype, and late phenotype ssc patients. intact nuclei were isolated from peripheral blood mononuclear cells and subjected to formaldehyde fixation resulting in crosslinking between physi- cally touching segments of the genome via contacts between their dna bound proteins. for quantification of cross-linking frequencies, the cross linked dna was digested and then subjected to ligation. cross-linking was then reversed and individual ligation products detected and quantified by episwitch custom oligo array annotated across the whole genome to the anchoring sites of d genome architecture. results: significant ccss were found over the hla-c, hla-b and tnf regions on chromosome in the early phenotype. the top pathways for genetic loca- tions associated to the ccss are shown in table  . table . top pathways for genetic locations associated to significant ccs for the early phenotype. geneset natural killer cell mediated cytotoxicity immunoregulatory interations between a lymphoid cell and a non-lymphoid cell antigen processing & presentation phagosome graft versus host disease type diabetes mellitus osteoclast differentiation class mhc mediated antigen processing & presentation significant ccss were found centred around the ifng region of chromosome in the late phenotype. the top pathways for genetic locations associated to significant ccss are shown in table  . table . top pathways for genetic locations associated to significant ccs for the late phenotype. geneset surfactant metabolism il signalling mediated by stat protein digestion & absorption calcineruin regulated nfat dependent transcription in lymphocytes transcriptional misregulation in cancer kaposi’s sarcoma associated herpes virus infection il mediated signalling events inflammatory bowel disease conclusion: significant ccss, as part of d genomic regulatory control, and their associated pathways for the genetic locations, were identified in both late and early phenotypes. there were distinct ccss in the early phenotype com- pared to the late suggesting the ccss change as the disease progresses and varies between phenotypes. if ccss could be linked to each clinically defined subgroup across a ssc cohort they could be used as a biomarker tool to predict outcome and progression in patients. disclosure of interests: megan galloway: none declared, ewan hunter: none declared, alexandre akoulitchev: none declared, shivanee vigne- swaran: none declared, bahja abdi: none declared, christopher denton grant/ research support from: glaxosmithkline, inventiva, csf behring, consultant of: roche-genentech, actelion, glaxosmithkline, sanofi aventis, inventiva, csl behring, boehringer ingelheim, bayer, david abraham: none declared, richard stratton: none declared doi: . /annrheumdis- -eular. pare abstract session op -pare using an educational application to facilitate understanding of the anatomy and function of the brain and to explore the effects of clinical fatigue from a patient perspective j. zurowski , c. wright , n. basu , m. poyade , l. bennett . the glasgow school of art, school of simulations and visualisation, glasgow, united kingdom; university of glasgow, institute of infection immunity and inflammation, glasgow, united kingdom background: rheumatic and musculoskeletal diseases are a group of devas- tating autoimmune disorders that all commonly share the debilitating symptom of fatigue. despite the fact that fatigue can often cause some of the greatest impairments to quality of life, it is frequently reported by patients as the least successfully managed symptom of these conditions. fatigue is routinely misunderstood within the general population, with many people using the word fatigue as a synonym for tired. fatigue is not the same as tiredness, which is a normal state that is experienced by most of the population, therefore it is important to help the general public understand what fatigue actually is and how it imposes consequences and limitations on those who suffer from it. to aid this understanding an educational application has been created to reinforce the patient perspective of living with fatigue. furthermore, this application will also aid the understanding of brain anatomy and function, using augmented reality (ar), as research has now shown that brain function may be altered in the state of fatigue. currently, educational ar applications show great potential for increasing comprehension and understanding of complex concepts. ar expands user engagement by enhancing the learner’s enjoyment and enriching their learning environment. we hope to utilise this technology in the education of fatigue. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://a rd .b m j.co m / a n n r h e u m d is: first p u b lish e d a s . /a n n rh e u m d is- -e u la r. o n ju n e . d o w n lo a d e d fro m http://ard.bmj.com/ scientific abstracts objectives: we aimed to create an ar application that has informative content designed to educate users on the topics of basic brain anatomy and function. furthermore, we aimed to increase the users understanding of the complete impairment of fatigue by creating a short video that describes living with fatigue from the patient’s perspective. methods: the application was created using medical scan dataset, a variety of d modelling software, and a game engine to create a functional and interactive augmented application. the short video regarding a patient’s perspective on liv- ing with fatigue was developed in collaboration with the glasgow arthritis involve- ment network patient partners. in order to determine if the application met its primary objectives a pilot test was conducted on participants. after consenting to taking part in the study, individuals were guided through a pre-application test, the use of the application itself and finally a post-application test. results: initial results from the pilot test showed promise in the educational potential of the application. with regards to the questions pertaining to the brain anatomy, the percentage of questions answered correctly increased from % in the pre-test to % in the post-test. furthermore, after using the applica- tion the participants reported a significant increase in their confidence for their answers. an additional six questions ascertained a participants perceptions of fatigue. from these questions, the answer that was most significantly changed after use of the application, was in relation to the impact that fatigue has on a patient’s quality of life (t-test p= . ). after use of the application participants’ opinions changed to reflect the fact that fatigue can completely impair a per- son’s quality of life, showing an increase in their understanding of the debilitat- ing nature of fatigue. conclusion: this research explored the development and effectiveness of an ar application that was centered around fatigue and basic neuroanat- omy education within the general population. from the pilot test conducted we are able to report that the application was successful in delivering edu- cational material about brain anatomy and was successful in increasing awareness about the impact that fatigue can have on an individual’s quality of life. acknowledgments: the glasgow arthritis involvement network (gain) disclosure of interests: none declared doi: . /annrheumdis- -eular. op -pare a paw? yes, thank you an animal assisted intervention (aai) pilot project for children with juvenile idiopathic arthritis (jia) u. viora* , p. ponzio , m. t. mascarino , b. picco , p. guiso , e. battista , s. martino , d. montin , m. dellepiane , g. rosso . amar piemonte, chieri, italy; university of turin, veterinary science, grugliasco, italy; amar piemonte, torino, italy; centro studi te.ca., chieri, italy; university of torino, torino, italy; ao città della salute e della scienza - oirm hospital, torino, italy background: animal-assisted interventions (aai) is the new way to indicate what was previously known as “pet therapy”, as activities can be done either with the conventional “pets” (dogs, cats and rabbits) or with horses and donkeys. children with jia have several problems in terms of adherence both due to the atavistic fear of the needle and due to nausea and vomiting - the most important side effects of methotrexate – often since the - days before the assumption to immediately after it. sure that animals can help children to forget this fear and to avoid the psycolog- ical conditions which enhance nausea, for the first time in italy (and probably in europe) it was designed a specific aai program for these children. objectives: to promote a general state of psycho-physical well-being in children and families about: manage of therapy; reduce discomfort and anxiety caused by entering hos- pital; improve self-esteem and the response to the stress generated by the execution of therapy and disease management; strengthen communication and socialization; stimulate the affective area through the activities of animal care. methods: dogs and cats are part of the recreational activities once a week in an equipped area in the oirm hospital (no alternative gateway was needed). paediatric rheumatologists selected two different groups of children: the first one ( children in the pilot study) every days; the second one ( children) every month; the selection was made looking at the therapeutic scheme. every session, one hour, has clearly distinct stages: welcome and organization: children say hello to dogs and cats, open the tool- kits specifically designed for the intervention, express their state of mind and are encouraged to tell their own stories. therapy: parents prepare and inject the drug to their children under medical or health professional control without discontinuation of the activities with animals. play and socializing: children are involved in petting and other activities with animals; they are also involved in manipulative activities (design, puppets shows, modelling clay, animal care, ball retriving, etc). this step has the aim to relieve stress and discomfort due to medical procedures. visual analogic scales (vas) were part of the toolkit, to let the researchers eval- uate the effects of the activity directly from the children experience. for the first time, we will control also the animal health status and wellness con- dition monitoring behavioural parameters and salivary cortisol level during each session. results: the pilot project started in october and nowaday we closed meetings, on october, on november, on december and on january, with the participation of dogs (golden and labrador retriever) and cat (devon rex) in each one. all children love to play with animals, seek their closeness at the time of therapy and enjoy playing all together with the dogs; no one cry or refuse therapy and, since the third session, no one has nausea before, during or after the injection. parents have reached a certain level of confidence: they stay quietly in the waiting room or go away to have a drink or to run an errand (it becomes a moment of relaxing for them too). animals remain in healthy and wellness conditions during the activity. conclusion: these preliminary data seem that aai to be useful in helping patients in jia to overcome some problems related to their pathology. disclosure of interests: ugo viora: none declared, patrizia ponzio: none declared, maria teresa mascarino: none declared, barbara picco: none declared, paolo guiso: none declared, eleonora battista: none declared, silvana martino: none declared, davide montin speakers bureau: not rele- vant for the topic, marta dellepiane: none declared, germana rosso: none declared doi: . /annrheumdis- -eular. figure . example of material change upon selection of occipital lobe option figure . augmented brain model scene using brain model as trigger o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://a rd .b m j.co m / a n n r h e u m d is: first p u b lish e d a s . /a n n rh e u m d is- -e u la r. o n ju n e . d o w n lo a d e d fro m http://ard.bmj.com/ anicare book reviews: the assessment and treatment of children who abuse animals. by kenneth shapiro, mary lou randour, susan krinsk and joann l. wolf. springer: cham, switzerland, ; pp; $ . ; isbn - - - - ; the identification, assessment, and treatment of adults who abuse animals. by kenneth shapiro and antonia j.z. henderson. springer: cham, switzerland, ; pp; $ . ; isbn: - - - - animals book review anicare book reviews: the assessment and treatment of children who abuse animals. by kenneth shapiro, mary lou randour, susan krinsk and joann l. wolf. springer: cham, switzerland, ; pp; $ . ; isbn - - - - ; the identification, assessment, and treatment of adults who abuse animals. by kenneth shapiro and antonia j.z. henderson. springer: cham, switzerland, ; pp; $ . ; isbn: - - - - catherine tiplady centre of animal welfare and ethics, school of veterinary science, university of queensland, gatton, qld , australia; catherine.tiplady@uqconnect.edu.au academic editor: clive j. c. phillips received: august ; accepted: august ; published: august the connection between abuse of animals and human interpersonal violence has attracted increasing interest from researchers, professionals and the community in recent decades. understanding the connection between animal abuse and human interpersonal violence is vital for all who work in the human and animal welfare fields; however, many professionals (in particular, veterinarians) feel ill-equipped to recognize and support victims of abuse. two recent publications by springer (the assessment and treatment of children who abuse animals and the identification, assessment, and treatment of adults who abuse animals) provide a concise and informative guide for those who work with people and animals impacted by abuse. the assessment and treatment of children who abuse animals. by kenneth shapiro, mary lou randour, susan krinsk and joann l. wolf. springer: cham, switzerland, ; pp; $ . ; isbn - - - - this book suggests a method of assessment and treatment for mental health professionals who work with children under years of age who have perpetrated or witnessed animal abuse. the book is also intended to be of use to those in allied fields, such as domestic violence workers, childcare providers, teachers and social workers. anicare child is divided into three sections—theory, assessment, and treatment and is very user-friendly, with subheadings and boxed text used to highlight case studies and key points. interventions outlined in the book can serve as the primary vehicle of treatment or as a supplement to interventions by therapists. topics covered include the diagnostic categories associated with children who commit animal abuse, use of pet therapy for children who have abused animals, the development of empathy, effects of witnessing animal abuse and discussion of attachment theory. animals , , ; doi: . /ani www.mdpi.com/journal/animals http://www.mdpi.com/journal/animals http://www.mdpi.com http://www.mdpi.com/journal/animals animals , , of appendices are well laid out and include screening questions on animal related experiences. supplementary electronic material includes workshop presentations and assessment and treatment material. the focus of this book appears to be most relevant to those working with children, rather than those (e.g., shelter workers and veterinarians) who are working with the abused animals. however, despite this, the book provides much needed information for anyone who wishes to learn more about children and animal abuse. the identification, assessment, and treatment of adults who abuse animals. by kenneth shapiro and antonia j.z. henderson. springer: cham, switzerland, ; pp; $ . ; isbn: - - - - this book provides guidance on how to identify, assess and treat adults who have abused animals. the theoretical framework utilized covers cognitive behavioral, attachment, psychodynamic and trauma-based theories. topics covered are diverse and include animal abuse occurring within male or female perpetrated domestic violence, self-harm and animal abuse, the role of veterinarians and the criminal justice system and how to establish a working relationship with the client who may be compliant, resistant or defensive. the perpetrator’s gender is discussed, with higher rates of animal hoarding reported among women, higher rates of animal abuse among men and approximately equal rates between male and female genders for animal neglect. additional materials include an appendix of cases that illustrate client presentations and electronic supplementary material demonstrating role-played interviews and a workshop presentation. in conclusion, the latest publications of anicare books (for those working with children and adults who abuse animals) provide an easy to read approach and will be of great interest to all in the human and animal welfare fields. it would be ideal for the publishers to combine both anicare books into a single volume in future editions. © by the author; licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc-by) license (http://creativecommons.org/licenses/by/ . /). http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ sample thesis title with a concise and accurate description a theory of program evaluation practices in disability management by patricia louise swenson b.a., simon fraser university, m.a., simon fraser university, m.a., the university of british columbia, a thesis submitted in partial fulfillment of the requirements for the degree of doctor of philosophy in the faculty of graduate and postdoctoral studies (measurement, evaluation & research methodology) the university of british columbia (vancouver) december © patricia louise swenson, ii abstract this grounded theory study developed a theory of evaluation in disability management programs. disability management involves managing the interactions between health condition impairments and their environments to overcome functional barriers. a sample of four sites was selected each site representing a different paradigm of disability management practices: biomedical, labour, biopsychosocial or insurance. data collection included semi- structured interviews with participants, including an administrator and practitioner from each site, the readiness for organizational learning and evaluation instrument, and documents from each site were analyzed. there were five major findings of the study. ) meaningful disability management program evaluation requires insight into how impairment environment interactions are being managed by the program. ) the presence or absence of collaboration among stakeholders contributes significantly to the variability in disability management and disability management evaluation. ) understanding how disability management programs are adapting to contextual influences contributes significantly to an explanation of variability in disability management and disability management evaluation. ) there are five primary disability management evaluation criteria: return to work, cost savings, timeliness of services, client satisfaction, and client functioning. ) disability management evaluation followed a consumer working logic approach, and was predominantly concerned with usefulness of services, and secondarily framed from perspectives of multiple stakeholders. additionally, disability management programs and their funding organizations are increasingly using technology to develop new data management systems for future use in evaluation. iii preface this dissertation is original, unpublished, independent research by the author, patricia louise swenson. the research study reported in chapters , , and were covered by: . university of british columbia behavioral research ethics board certificate of approval # h - . vancouver coastal health authority clinical trials administration office approval research study # v - iv table of contents abstract .................................................................................................................................... ii preface ..................................................................................................................................... iii table of contents ................................................................................................................... iv list of tables ........................................................................................................................ xiii list of figures ....................................................................................................................... xiv acknowledgements ............................................................................................................... xv dedication ............................................................................................................................. xvi chapter : introduction .......................................................................................... . background ................................................................................................................... . conceptual underpinnings .......................................................................................... . purpose of this research .............................................................................................. . assumptions and limitations of the study ................................................................. chapter : literature review ............................................................................. . program evaluation and planning .............................................................................. . foundational issues in research on evaluation ........................................................ . . cultural competence ............................................................................................. . . diversity ................................................................................................................. . . organizational learning and evaluation ............................................................. . . context ................................................................................................................... . evaluation theory ...................................................................................................... . defining disability management ............................................................................... v . models of disability and return to work ................................................................ . evaluation of disability management ....................................................................... . . literature reviewed. ............................................................................................. . . disability management evaluation ...................................................................... . research and evaluation ............................................................................................ . disability management evaluation contextualized within the evaluation field . . summary ...................................................................................................................... chapter : research methodology ............................................................... . obtaining and maintaining ethical consent for this study ................................... . research questions ..................................................................................................... . selecting which paradigms to include in this study ............................................... . evidence of different paradigms within the sample of sites ................................. . . biomedical paradigm site ..................................................................................... . . labour paradigm site ........................................................................................... . . biopsychosocial paradigm site ............................................................................. . . insurance paradigm site ....................................................................................... . other characteristics of the disability management programs ............................ . participants at the study sites ................................................................................... . . soliciting participation in the study .................................................................... . . participants at the biomedical site ...................................................................... . . participants at the labour site .............................................................................. . . participants at the biopsychosocial site .............................................................. . . participants at the insurance site ........................................................................ vi . methodology ................................................................................................................ . . grounded theory methodology ............................................................................ . . grounded theory methodology for this study .................................................... . . . simultaneous collection and analysis of data ................................................. . . . two-step data coding ...................................................................................... . . . constant comparative methods ....................................................................... . . . memo writing and visual displays .................................................................. . . . theoretical sampling ...................................................................................... . . . theoretical integration ................................................................................... . data collection methods ............................................................................................ . . scheduling interviews and completion of the role......................................... . . semi-structured interviews .................................................................................. . . documents analyzed ............................................................................................. . . the role inventory ........................................................................................... . . . uses of the role in this study. ...................................................................... . . triangulation of multiple data sources ............................................................... . issues of validity and reliability ............................................................................... . reflexivity .................................................................................................................. . summary .................................................................................................................... chapter : results ..................................................................................................... . biomedical paradigm site .......................................................................................... . . context and framework of this program ............................................................ . . evaluation practices within the biomedical site ................................................. vii . . . value of evaluation ......................................................................................... . . . goals of evaluation ......................................................................................... . . . stakeholder involvement ................................................................................. . . . evaluation data collected ............................................................................... . . . use and reporting of evaluation data ............................................................. . . . summary of evaluation practices .................................................................... . . evaluation practices and organizational learning ............................................. . . . summary of role scores at the bm site ........................................................ . . organizational cultural context ........................................................................... . . . insurance system culture................................................................................. . . evidence of evaluation grounded in a biomedical paradigm.......................... . . . discussion ........................................................................................................... . labour paradigm site .............................................................................................. . . context and framework of this program .......................................................... . . evaluation practices within the labour site. ..................................................... . . . value of evaluation ....................................................................................... . . . goals of evaluation ....................................................................................... . . . stakeholder involvement ............................................................................... . . . evaluation data collected ............................................................................. . . . use and reporting of evaluation data ........................................................... . . . summary of evaluation practices .................................................................. . . evaluation practices and organizational learning ........................................... . . . summary of role scores at the labour site ............................................... viii . . organizational cultural context ......................................................................... . . . union management culture ........................................................................... . . . stigma of mental illness ................................................................................ . . evidence evaluation was grounded in a labour paradigm .............................. . . discussion ............................................................................................................ . biopsychosocial paradigm site ................................................................................ . . context and framework of this program .......................................................... . . evaluation practices within the biopsychosocial site ....................................... . . . value of evaluation ....................................................................................... . . . goals of evaluation ....................................................................................... . . . stakeholder involvement ............................................................................... . . . evaluation data collected ............................................................................. . . . use and reporting of evaluation data ........................................................... . . . summary of evaluation practices .................................................................. . . evaluation practice and organizational learning............................................. . . . summary of role scores at the bpsy site .................................................. . . organizational cultural context ......................................................................... . . . peer mentoring and lived experiences .......................................................... . . evidence evaluation was grounded in a biopsychosocial paradigm .............. . . discussion ............................................................................................................ . insurance paradigm site .......................................................................................... . . context and framework of this program .......................................................... . . evaluation practices within the insurance site ................................................. ix . . . value of evaluation ....................................................................................... . . . goals of evaluation ....................................................................................... . . . stakeholder involvement ............................................................................... . . . evaluation data collected ............................................................................. . . . use and reporting of evaluation data ........................................................... . . . summary of evaluation practices .................................................................. . . evaluation practice and organizational learning............................................. . . . summary of role scores at the insurance site ............................................ . . organizational cultural context ......................................................................... . . . insurance system culture............................................................................... . . evidence evaluation was grounded in an insurance paradigm ...................... . . discussion ............................................................................................................ . participants’ perceptions of what is most important to evaluate ...................... . analysis of the role results .................................................................................. . . biomedical (bm) site role results .................................................................. . . labour site role results .................................................................................. . . biopsychosocial (bpsy) site role results ....................................................... . . insurance site role results .............................................................................. . . summary of role results ................................................................................ chapter : discussion ............................................................................................. . introduction ............................................................................................................... . open coding .............................................................................................................. . . line by line coding .............................................................................................. x . . transition from open codes to conceptual coding ........................................... . . . visual display of open codes ......................................................................... . . . concrete versus abstract............................................................................... . defining conceptual codes ...................................................................................... . . grouping open codes into conceptual categories ............................................. . developing themes ................................................................................................... . . selecting conceptual codes relevant to emerging themes ................................ . . summary of conceptual codes relevant to emerging themes .......................... . testing the themes ................................................................................................... . . reflexivity ............................................................................................................ . . categorizing the themes ..................................................................................... . . . themes .......................................................................................................... . differentiating evaluation in the four paradigms ................................................ . . conceptual themes at the paradigmatic sites ................................................... . inter-relating explanations of evaluation .............................................................. . . introduction......................................................................................................... . . collaboration....................................................................................................... . . . collaboration and learning as illustrated by role scores ......................... . . contextual influences ......................................................................................... . . . the problem being addressed by evaluation ................................................ . . . the intervention being examined .................................................................. . . . the broader environment or setting ............................................................. . . . the evaluation context .................................................................................. xi . . . the decision making context ......................................................................... . . data management systems. ................................................................................ . . primary disability management evaluation criteria. ....................................... . evaluation theory .................................................................................................... . . situating disability management evaluation at the sites within alkin & christie’s evaluation theories. .................................................................................... . . . biomedical site .............................................................................................. . . . labour site .................................................................................................... . . . biopsychosocial site ...................................................................................... . . . insurance site. ............................................................................................... . . sources of evidence of evaluation use at the sites. ........................................... . . types of evaluation use at the sites ................................................................... . . working evaluation logic at the sites of this study .......................................... . . . biomedical site .............................................................................................. . . . labour site .................................................................................................... . . . biopsychosocial site ...................................................................................... . . . insurance site ................................................................................................ . . . summary of working logic in program evaluation at the four sites. ............ . a tentative grounded theory of disability management evaluation............... . answering the research questions: a summary ................................................ . . what is the extent and nature of evaluation practice within the disability management programs? .............................................................................................. xii . . how does disability management evaluation practice vary depending on whether the organization is a learning organization? .............................................. . . how does disability management evaluation reflect diversity and cultural constructions? .............................................................................................................. . . what evidence is there that disability management evaluation is grounded in a particular paradigm of disability and return to work? ........................................ . analysis of the state of disability management evaluation in relation to the evaluation field .............................................................................................................. . contributions of this study ................................................................................... . limitations of this study ...................................................................................... . future directions ................................................................................................... . conclusions .............................................................................................................. references ............................................................................................................................ appendix a .......................................................................................................................... appendix b .......................................................................................................................... appendix c .......................................................................................................................... appendix d .......................................................................................................................... appendix e .......................................................................................................................... xiii list of tables table sources of literature reviewed at the onset of this study .................................... table timeline followed to obtain and maintain ethical consent ................................. table key elements of paradigms of disability and return to work .............................. table annual incoming referrals and caseload sizes ..................................................... table characteristics of the sites participating in this study ........................................... table dates of participants’ interviews ............................................................................ table grounded theory semi-structured interview questions ....................................... table documents obtained on the programs ................................................................... table evaluation activities at the biomedical site .......................................................... table evaluation activities at the labour site ........................................................... table evaluation activities at the biopsychosocial site ............................................ table evaluation activities at the insurance site ....................................................... table program objectives and participant’ suggestions of what is most important to evaluate ........................................................................................................................... table individual participants’ responses to readiness for organizational learning and evaluation inventory (role)............................................................................................... table data analysis map ............................................................................................ table conceptual categories and open codes ........................................................... table conceptual themes evident at the paradigmatic sites..................................... table participants’ role responses on categories related to collaboration and learning ........................................................................................................................... table theoretical orientations for dm paradigms..................................................... xiv list of figures figure examples of memos ................................................................................................ figure communication among program stakeholders as described by the biomedical participants .............................................................................................................................. figure communication among program stakeholders as described by the labour participants ............................................................................................................................ figure communication among interdisciplinary programs available to clients as described by the biopsychosocial participants .................................................................... figure communication among program stakeholders as described by the insurance participants ............................................................................................................................ figure condensing and adding conceptual codes ........................................................... figure conceptual groupings within disability management evaluation ........................ figure disability management evaluation theory and logic .......................................... xv acknowledgements i express my sincere gratitude to all the faculty members who have guided and supported me throughout my studies at the university of british columbia, including during this research study my committee members dr. sandra mathison, dr. izabela schultz and dr. nand kishor. i am grateful to rebecca trainor of the faculty of graduate and postdoctoral studies for her encouragement during the dissertation process. i am very appreciative of the camaraderie shared with my fellow merm students during our time together at ubc, and thank my employer worksafebc and dr. robert mckenzie for their support. last but not least i thank my daughter missy stone for her faith and lionel webb for supporting me in so many ways. xvi dedication i dedicate this research study to paramahansa yogananda who inspires appreciation for lifelong learning. chapter : introduction . background a recent analysis of the state of evaluation in canada concluded there is too little research on evaluation and the authors called for studies to evaluate the relevance, performance, outputs and contributions of any evaluation (gauthier et al., ). research on evaluation practice can “keep current problems in evaluation in better historical perspective, provoke thoughtful consideration of present options, and enable us to create more effective alternatives for the future” (smith and brandon, , p. viii). a growing evidence base would contribute answers to questions such as, “which approaches to evaluation, implemented how and under what conditions, actually lead to what sort of improvements” (mark, , p. ). in response to this call for more research on evaluation the current study explored evaluation practice in the field of disability management. over the past two decades little has been documented about disability management evaluation, however, during this same period the disability management field has expanded into a multi-billion dollar industry worldwide. by examining evaluation practices in disability management programs, this study will to some extent fill the void in research on evaluation by developing a theory regarding disability management evaluation. originally disability management was based on a biomedical perspective, where medical professionals oversaw treatment of impairments, and employers were considered responsible to provide jobs that were suitable to accommodate disabilities. as different stakeholders’ interests became more prominent in the field (such as workers, employers, insurance funders, multi-disciplinary treatment teams, unions) disability management expanded and evolved to include those various different perspectives. multiple paradigms of practice emerged in the field representing that diversity of stakeholder perspectives. with the expansion of paradigms it was recognized that research (and presumably program evaluation) on disability management needed to examine levels of complexity that had developed in relation to multiple stakeholder priorities (pransky, gatchel, linton and loisel, ), “an ideal model of [return to work] should make sense from multiple stakeholder perspectives, and incorporate a range of their priorities – especially sustained employment, worker productivity, and costs, as well as key features of the [return to work] process. it should serve to bridge the gulf between traditional biomedically-driven practices, and empirically supported biopsychosocial approaches that are more acceptable, and perhaps more effective in driving meaningful change in [return to work]- related practices” (p. ). given that evaluation and disability management programs often operate within complex and dynamic organizational systems, related factors identified in the literature on evaluation and disability management can be identified. this study of disability management evaluation examined the roles of diversity, cultural competence and organizational learning within evaluation, and focused on four disability management paradigms: biomedical, labour, biopsychosocial and insurance. . conceptual underpinnings a social constructivist epistemology underlies this research. constructivism holds there is not one objective external truth that exists and is waiting to be discovered, but that meaning is made through our conscious engagement with our world and we do not discover knowledge so much as construct it (crotty, ). a constructivist epistemology does not strive to build a theory of one single truth, but assumes that knowledge that is real is based on multiple perspectives (nagy hesse-biber, ). “people do not invent the world anew each day. rather, they draw upon what they know to try to understand what they do not know” (corbin and strauss, , p. ). as individuals are exposed to new information they continually develop understandings, and throughout this process construct new meanings and new values. social constructivism refers to a sociocultural and historical dimension of this construction (schwandt, ) where knowledge is shared among people. social constructivism holds that meaning is made through our conscious engagement with the world (crotty, ) and historical and sociocultural shared understandings of ideas or facts (schwandt, ). to understand how people are forming interpretations the enquirer must enter into their situation to see it from their perspective, consider what they take into account, and how they interpret information encountered. theoretically this study assumed a subjectivist approach to valuing. the sample of programs and participants were selected to maximize perspectives as diverse as possible. this included sampling four disability management sites that each represented a different paradigm of disability management, and selecting participants from each site that included a practitioner and an administrator. the study focused on the unique combination of influences faced at each disability management site, including exploration of the site’s context, diversity, organizational learning and cultural influences. this study used a grounded theory research methodology. grounded theory involves data collection and simultaneous analyses employing techniques of induction, deduction and verification (schwandt, ). grounded theory methods included two levels of data coding. open coding involves the researcher naming events and actions in the data, constantly comparing them to one another to analyze how they relate (harry, sturges and klinger, ). conceptual coding reflects grouping of open codes with similar properties, and the researcher identifying meaningful themes from analyses of the conceptual findings. themes are tested and interrelated as an explanation emerges of how the substantive model operates, culminating in development of a theory. . purpose of this research little research has been done on evaluation of disability management, and much of the research on disability management evaluation focuses on outcome studies that measure economic and social cost savings, and return to work. prior research has adopted a narrow definition of disability management and a narrow perspective of evaluation. seeking a single narrow perspective of a phenomenon rather than exploring diverse perspectives is a potential loss of important information (guba and lincoln, ). consideration of context and diversity within disability management evaluation offers the potential for new insights. disability is a constructed variable relative to its context (smart, ). for example, various disabilities can be seen as best managed by medical experts, or disabilities can be seen as the responsibility of those with disabilities. and, how the individual manages their disability varies a great deal based on both personal and contextual factors. recent research gives central consideration to contextualization of the individual, and how the personal system of the individual (physical, cognitive, affective and social factors) interacts with health, workplace, and compensation systems (loisel et al., ). characteristics of organizations in which disability management programs exist, including how learning is perceived within the organization, also contribute to understanding disability management programs and their evaluation. organizations that encourage learning offer an opportunity for change and renewal (kaufman and senge, ) and foster cultures likely to build evaluation capacity (taut, ). learning and evaluation in organizations have a synergistic relationship. evaluation can be a mechanism to build learning within organizations: “for organizational learning to occur, it is critical that an environment for learning be established and maintained. this involves creating processes that support employees’ efforts to reflect on their experiences, discussing and analyzing how their efforts contribute to the organization’s strategic plan, and assessing current work systems to determine their effectiveness in meeting customer needs and expectations” (preskill, , p. ). in an area where little research has been conducted, as is the case with disability management evaluation, research on current practices fills a void in understanding evaluation within a particular domain. four research questions guided this study: # . what is the extent and nature of evaluation practice within the disability management program? # a. how does disability management evaluation practice vary depending on whether the organization is a learning organization? # b. how does disability management evaluation reflect diversity and cultural constructions? # c. what evidence is there that disability management evaluation is grounded in a particular paradigm of disability and return to work? . assumptions and limitations of the study this research examined evaluation at four sites each representing a different paradigm of disability management: biomedical, labour, biopsychosocial and insurance. “the boundaries among the models are somewhat arbitrary as they share many common themes and factors” (schultz, stowell, feuerstein and gatchel, , p. ) but the distinctions are robust enough to categorize disability management programs and thus to examine potential differences in approaches to evaluation. evidence of multiple paradigms may be present within any one site to greater or lesser degrees; however, each site was selected with the understanding that services at the site were predominantly representative of one paradigm. each site was selected as representative of one particular paradigm based on my familiarity with each program, reviews of documentation provided by each site, initial conversations with participants, reviews of the literature on disability management paradigms, and my analysis of this information based on my knowledge gained from over years experience working with disability management programs. although practices at each site primarily reflect one paradigm, i recognized that individuals from the same site participating in this study may have aligned their beliefs with different paradigms, as each of them holds unique understandings about what is valued and how it should be evaluated. each individual’s understandings may also reflect characteristics of multiple paradigmatic orientations, and their views could change over time. during the study i made a conscious effort to recognize the influence of my own understandings. corbin and strauss ( ) argued, “more than one story can be derived from data” (p. ). different analysts vary on what they focus on, interpretations they make, meanings they relate to and conclusions they draw, “furthermore the same analyst might look at the same data differently at different times" (p. ). i have attempted to maintain awareness of my perspectives and clarify potential influences on interpretations. chapter : literature review . program evaluation and planning strategic program planning starts with identification of needs and the development of program objectives that link the program to serving those needs (taylor- powell, ). ideally, acceptable standards of services are explicitly stated. programs conceptualized at senior levels of an organization or where funding is being decided, rely on the expertise of experienced administrators to lay program foundations, and input from all levels for support throughout program implementation (curtis and scott, ). stakeholder buy-in is a process that requires building consensus without exception on an ongoing basis (rankin, ). integrated, pluralistic approaches to leadership ensure that efforts throughout the organization, point in one direction toward a shared vision (preskill and torres, ). it is generally accepted that evaluation should be conceptualized during program planning, including formative evaluation to create opportunities for program feedback intended to support the process of improvement, and summative evaluation to assess the degree to which program outcomes meet targets (wholey, ). during the planning phase of a program, consideration should be given to establishing regular program evaluations. this includes conducting needs assessments, establishing criteria and standards expected to meet needs, developing methods to evaluate whether program objectives are being met, and providing up to date information to understand program successes and changes, “ongoing evaluation is really the only objective way of knowing what aspects of your program are working and what aspects need reviewing” (rankin, , p. ). those closely involved with day to day programmatic operations can be sources of knowledge regarding program functioning that may contribute to evaluative insights for redirection or ways to mine previously undiscovered opportunities (mayne, divorski and lemaire, ; sonnichesen, ). whether evaluation is conducted by non experts, internal evaluators or external evaluators, learning should be promoted through evaluation practices, as well as fostering further evaluation development and utilization of results (lemaire and boyle, ). to achieve quality standards, evaluation findings should be communicated to all levels of the organization for use to address deficits and make improvements (harder and scott, ; nickerson, ; strasser, ). . foundational issues in research on evaluation there are a number of recurring foundational issues identified in the research on evaluation literature: the role of the evaluator, stakeholder participation, establishing meaningful criteria and standards to evaluate, and exploring ways to ensure findings are useful (smith and brandon, ). additionally, other emerging issues in the evaluation literature are: the importance and role of cultural competence, promotion of a transformative theme which strives to address power discrepancies, identification of interacting variables that can place some individuals at a disadvantage (mertens, ), and, how organizational openness to learning, change and evaluation capacity building can contribute to sustained and dynamic evaluation benefits (preskill and torres, ; senge, ). consideration of context in which evaluation occurs can contribute relevance, rigor, and improved opportunities for evaluation findings to be generalized (rog, ). several of these issues seem particularly salient to disability management program evaluation: cultural competence, diversity, organizational learning and context analysis. these issues have the potential to contribute multi-dimensional perspectives of issues that impact disability management and its evaluation. . . cultural competence. sensitivity to cultural diversity in program development, implementation and evaluation involves the understanding and valuing of multiple dimensions, perspectives and world views of diverse stakeholders. cultural competence in program evaluation “… rests on active awareness, understanding, and appreciation for the context at hand, and it uses responsive and inclusive means to conduct evaluation” (sengupta, hopson and thompson-robinson, , p. ). cultural competence in evaluation has been defined as, “…systematic, responsive inquiry that is actively cognizant, understanding, and appreciative of the cultural context in which the evaluation takes place; that frames and articulates the epistemology of the evaluative endeavor; that employs culturally and contextually appropriate methodology; and that uses stakeholder-generated, interpretative means to arrive at the results and further use of the findings” (sengupta, et al., , p. ). madison’s ( ) review of publications focusing on cultural competence in evaluation over the prior twenty years reported that evaluators found cultural responsiveness and cultural competence make a positive difference in evaluation outcomes and utilization, and are worth the increased investment of time. cultural competence involves evaluators seeking awareness of their own culturally-based assumptions, understanding worldviews of culturally-different participants, and using appropriate evaluation strategies and skills in working with culturally different groups. culturally significant factors include, the shared experiences of people, including their languages, values, customs, beliefs, and mores. it also includes worldviews, ways of knowing, and ways of communication. culturally significant factors encompass, but are not limited to race/ethnicity, religion, social class, language, disability, sexual orientation, age and gender. contextual dimensions such as geographic region and socioeconomic circumstances are also essential to shaping culture….cultural groupings can refer to...organizational culture, gay culture, or disability community culture. culture also refers to the institutions (such as government, education, family, and religion) and economic systems that shape and preserve shared patterns of thought, behavior, and beliefs. (american evaluation association, , p. ). culturally competent evaluators are encouraged by professional standards, such as those offered by the american evaluation association, to see cultural categories as fluid, and to avoid reinforcing cultural stereotypes and prejudice (for example when working with data organized by cultural categories). cultural competence in health care, and by extension disability management, involves sensitivity to and understanding of individuals’ beliefs and values in relation to their heritage. cultural competence for health care providers has been defined as: awareness of one’s self without having undue influence on those from other backgrounds; demonstrating knowledge and understanding of clients’ culture, health needs and views of health and illness; accepting and respecting cultural differences; not assuming clients’ and providers’ beliefs and values of health care are the same; resisting judgment; being open to cultural encounters; and consciously adapting to be congruent with the client’s culture (purnell and paulanka, ). . . diversity. disability management contexts include the simultaneous interests of multiple stakeholder groups (franche, baril, shaw, nicholas and loisel, ; young, wasiak, et al., ). overlooking the potential impact of multiple variables, risks making incorrect assumptions, and missing important information regarding complex program contexts and program participant motivations (loisel et al., ). research on evaluation of disability management has not explored potentially valuable information regarding multiple perspectives and, “…their social origins in workplace interaction or in particular institutional policies and administrative structures” (eakin, clarke and maceachen, , p. ). viewed from a systems theory perspective, disability management involves understanding the diversity of multiple stakeholders, including their motivations, interests and concerns. a systems theory perspective, “…maintains that people with disabilities and their life outcomes are influenced by the family, school, peer, independent living, employment, health and rehabilitation service, and social – political- economic environments” (young, wasiak, et al., , p. ). conceptualization of disability has been changing to a paradigm where it is thought to involve an interaction among the individual, the disability and the environment (smart and smart, ). as disability management considers the interactions between impairments and their environments, the disability management process requires understanding diverse psycho-social factors within the environment, and interactive processes between diverse stakeholders: employee, employer, insurer, health care provider (franche and krause, ). . . organizational learning and evaluation. within the current era where knowledge is a valuable commodity, collaboration and learning are keys to organizational sustainability. in learning organizations “people are always enquiring into the systematic consequences of their behavior rather than just focusing on local consequences” (kafman & senge, , p. ) and what they can learn is more important than what they already know. however, people can be resistant to change (beer, ) and a great effort must be made for organizations to achieve a cultural shift to become learning organizations. constructivist learning theory considers learners as active not passive where behavior is mediated by the social environment (preskill and torres, ). the process of evaluative inquiry, when grounded in a constructivist theory of learning, builds organizational learning through the following steps: “…(a) the collective creation of meaning, (b) action, (c) the development of new knowledge, (d) an improvement in systemic processes, and (e) the overcoming of tacit assumptions” (preskill and torres, , p. ). constructivist learning theory holds that learning is about making meaning, and is built upon the belief that all knowledge is based on experience and that meanings are arrived at by continually seeking order in these experiences. rather than just reacting to whatever they encounter in the world, people are purposive and confront issues so that they can make meaning of one another’s actions (schwandt, ). constructivist learning theory is useful for understanding learning in organizational environments, “adding the sociocultural variable to learning, social constructivism theory views learners as active agents in the construction of outcomes and stresses that the social setting itself is an evolving construction. when members of a social setting (e.g. an organization) share their social constructions, the cycle of learning is renewed” (preskill and torres, , p. ). preskill and torres argue that a learning culture grounded in social constructivist theory assumes collective creation of meaning and development of new knowledge, overcoming of assumptions, and dissemination of knowledge throughout the organization. organizational learning has been enthusiastically embraced as a means of enhancing capacity for change and renewal. in learning organizations people are encouraged to be open, to let go of assumptions and certainties, and risk learning about complex issues. this takes vision and courage to look past the usual stability and examine possible systemic consequences of one's actions (kofman and senge, ; senge, ). organizations that encourage evaluation, and that foster cultures that appreciate learning from evaluation, are likely to build evaluation capacity, and evaluation is likely to have impact within those organizations (taut, ). success in becoming a learning organization involves individuals making changes by creating, acquiring and transferring knowledge (owen, ). the process is dynamic, where individuals from all levels of the organization take responsibilities for the creation and transfer of learning, as they are considered the experts of their own learning needs. this requires basic shifts in how we think and interact beyond the individual within the corporation, penetrating our assumptions and habits (kofman and senge, ). . . context. the environment or setting in which a program functions is what evaluators most commonly view as context (rog, ), and understanding the social realities within the context contributes to a more valid interpretation of program evaluation findings. conner, fitzpatrick and rog ( ) recommend “placing context among the primary considerations that are involved in the evaluation process” (p. ) including doing context analysis during evaluation planning, during implementation and during utilization of findings. rog ( ) proposed five areas of context analysis to consider: the phenomena and the problem; the nature of the intervention; the broader environment/setting; the evaluation context; and the decision making context. within each area of context analysis rog proposed considering physical, organizational, social, cultural, tradition, historical and political dimensions. as circumstances are dynamic, any of these five areas may be relevant at given times, and other significant influences may also be discovered. context is a complex phenomenon, where most contexts have multiple layers and multiple dimensions that can be interacting in important ways (greene, ). in evaluation, information can lose meaning if decontextualized, and “good evaluation is responsive to, respectful of, and tailored to its contexts in important ways” (p. ). . evaluation theory there is no single theory of evaluation. rather, evaluation is comprised of many different models or approaches that explain activities and processes of evaluation applied in relation to specified goals and depending on particular sets of circumstances and assumptions. evaluation theory is “that aspect reflecting our thinking about how and why we engage in evaluation; whether evaluation is done for purposes of validation, accountability, monitoring, or improvement and development; whether evaluation is a form of knowledge production, client service, social reform, or political control” (smith and brandon, ). multiple classifications have contributed to understanding the formalization of evaluation. one of the most notable classifications of evaluation practice was the seminal work of shadish, cook and leviton ( ) that described stages of evaluation and significant developments within the field. evaluation had primarily borrowed methods from other social sciences until the s when growth of social programs led to substantial focus on their evaluations. theories at this stage emphasized scientific rigor in solving social problems, and focused on cause-effect relationships. evaluation theorist scriven developed a four step logic of evaluation to generate value statements about any entity: select criteria of merit; set standards of performance; measure performance; and synthesize results in to a value statement. this approach was directed to consumers, and remains a main logic within evaluation. campbell clarified traditional scientific experimental methods versus quasi experimentation, and internal and external validity. during the s stage two theories criticized the scientific approach for having had an inadequate focus on evaluation use to improve social programs. theoretical focus shifted to ways of increasing use, involving for example identification of intended users of evaluation findings, determining information needs of decision makers, and providing information on why programs had failed and how they could succeed. theorists including weiss, wholey and stake focused more on enlightenment evaluation (for long term policy changes) rather than instrumental evaluation (for incremental improvements). these theories emphasized pluralistic approaches and multiple methods compared to stage one theories, and considered questions about program description, explanation, generalization and discovery, rather than just questions about causation. stage three theories synthesized work from the preceding stages, including use to improve social programs and systematic methods to obtain valid knowledge. the focus of these theories was how evaluation could influence policy, primarily concerned with enlightenment rather than formative or summative program evaluation. these evaluation theories continued the focus on using evaluation to justify and improve future programs, with consideration of the conditions or contexts under which programs occurred and potential evaluation impacts. in an effort to overcome weaknesses of earlier generations of evaluation theory that had been based on objectives, description and judgment, guba and lincoln ( ) introduced fourth-generation evaluation that focused on intensive stakeholder participation. this approach assumed a constructivist epistemology with an objective of uncovering multiple values and used mixed methodologies, fitting the method to the question (lincoln, ). a range of other participatory and collaborative approaches have developed, including: practical participatory, transformative participatory, democratic, developmental, and empowerment evaluation (cousins and whitmore, ). a seminal classification of evaluation theory developed by christie and alkin ( ) used a tree metaphor to explain the roots and branches of evaluation theory. the evaluation theory tree has three roots: social inquiry, epistemology and social accountability, each contributing to development of the field in different ways. the social inquiry root contributes systematic, methodical and justifiable evaluation procedures for being accountable. the epistemology root enables arguments on the nature of knowledge. the social accountability root has been an important motivation for evaluation to improve programs and society. there are three branches on the evaluation tree: methods, valuing and use. the methods branch of evaluation grows predominantly from the social inquiry root, and is primarily guided by research methodology. the valuing branch grows predominantly from the epistemology root, and is either objectivist (evaluator driven) or subjectivist (pluralistic attending to multiple stakeholders’ values). the use branch grows predominantly from the social accountability root and focused on decision making. the tree metaphor is three dimensional, situating theories and theorists on the tree in relation to all roots and branches. on a conceptual level, critical features contribute to evaluation theory throughout its ongoing development. these features include theories of knowledge construction, valuing, purposes, practices, and use, which along with variables such as types of data or evaluation logic, guide evaluation practices and comprise evaluation theories. epistemology, the theory of knowledge, is embedded in theoretical perspectives that guide social science, including: objectivism (that assumes meaning and reality exist apart from any consciousness, and an object exists whether or not anyone is aware of it); or, constructivism (that assumes there is no objective truth waiting to be discovered, truth comes into existence through our engagement with the world as we construct meanings about things we encounter) (crotty, ). like social sciences, epistemological perspectives underlie the perspectives of evaluators and evaluation. it is valuing that distinguishes evaluation from general social science research. evaluation theory addresses questions about valuing, such as: whether evaluation should compare programs to each other or compare programs to established standards, or whose criteria and standards should be considered for judging programs. valuing theory also specifies the nature of metaevaluation, including justification, validation and verification (mathison, ). valuing within evaluation theory has generally been classified as either descriptive or prescriptive. descriptive refers to “a set of statements and generalizations that describes, predicts, or explains evaluation activities-such a model is designed to offer an empirical theory”. prescriptive refers to “a set of rules, prescriptions, prohibitions, and guiding frameworks that specify what a good or proper evaluation is and how evaluation should be done” exemplars generated by knowledgeable members of the evaluation field (alkin, , p. ). prescriptive program evaluation “consists of an explicit theory or model of how the program causes the intended or observed outcomes and an evaluation that is at least partly guided by this model” (rogers, petrosino, huebner, and hacsi, , p. ). differentiation among the various purposes for conducting evaluations is also instrumental to evaluation theory. scriven ( ) identified two main evaluation purposes: summative, to judge whether a program has met its objectives, and therefore to verify its merit or worth; and, formative, to inform program adjustments toward improving program implementation and outcomes. patton ( ) summarized four other main evaluation purposes: monitoring, to contribute internally to routine program management; accountability, for external decision making and resource management; developmental, to contribute information for making strategic systems changes within dynamic environments; and, knowledge, to generate information toward overall incremental accumulation of information for design, planning, theorizing, research and policy making. chelimsky ( ) suggested there are three main purposes of program evaluation: policy formulation, for development of new programs; policy execution, for assessing existing programs; and, accountability, for determining program effectiveness. evaluation theory is also characterized by evaluation practices. smith and brandon ( ) explained evaluation practice refers to “the immediate world of politics, clients, resources, role ambiguity, and changing field conditions; the practical concerns of getting the work done well and of making a difference (p. ix). mathison ( ) explained a theory of evaluation practices includes the evaluator’s role, the nature of the evaluand and the program, the nature of evidence, identification of stakeholders, how stakeholders will participate in the evaluation including conceptualization of power, the nature of normative discourse (cause and effect), and ways of synthesizing. “there are ways of doing things that are a part of evaluation, and although methods for evaluation are drawn from the social sciences, there are questions that must be addressed in relation to the use of those methods by evaluators for the purposes of assigning value. what is evidence, and how do we make sense of it? what is the relationship between generalizations and evaluation? how do we conceive of evaluands? what are the interpersonal, political, and social components of evaluation” (p. ). another significant feature of evaluation theory is identification of the ways evaluation can be used. the theory of evaluation use is one of the most researched areas of evaluation, and has been defined as “the effect the evaluation has on the evaluand and those connected to the evaluand” (christie, , p. ). use of evaluation findings has traditionally been classified into three categories: instrumental use, conceptual use and symbolic use (johnson et. al. ; patton, ). instrumental use refers to when evaluation knowledge is directly used to inform a decision or contribute to problem solving. conceptual use occurs when no direct action is taken, but an evaluation influences people’s understanding. symbolic use is when token or rhetorical support is given for an evaluation to maintain appearances, with no intent to take either the process or findings seriously. patton ( ) provided a nuanced explanation and categorization of different types of use including: direct intended use, longer term more incremental influences, primarily political uses, misuses, non-uses and unintended outcomes. instrumental use, which is direct and intended, can be differentiated into conceptual use or process use. conceptual use influences how key people think about a program or policy, but no action flows from the findings. process use refers to when changes result from engagement in the evaluation process. longer term, more incremental influences of evaluation can be intended or unintended, and can flow from the evaluation process or results. enlightenment refers to influences that can occur when new ideas from evaluation contribute to new understandings and in the long term to policy making. uses that are primarily political are referred to as symbolic. symbolic use is defined broadly as “the use of evaluation to maintain appearances, to fulfill a requirement, to show that a programme or organization is trustworthy because it values accountability, or to legitimate a decision that has already been made” (mcnulty, , p. ). multiple symbolic uses have been differentiated: legitimate use, persuasive use, imposed use, or mechanical use (patton, ). legitimate use refers to using an evaluation to support a decision that was made prior to the evaluation. persuasive use refers to using evaluation findings, often selectively, to support one’s position in funding decisions or political debates. imposed use occurs when those at a higher level of power mandate a particular form of evaluation use by those at a lower level, for example a governmental condition for funding a program. mechanical use refers to going through the motions to meet an evaluation requirement, where the motivation is compliance and implementation is mechanical. misuses of evaluation refer to “calculated and intentional suppression, misrepresentation, or unbalanced use of evaluation findings to influence opinions and decisions” (patton, , p. ). inadvertent misuse, also called mistaken misuse, occurs when those using findings lack the competence or spend too little time to understand findings, or are swayed by the evaluator’s status, expertise or personality rather than the findings. overuse occurs when too much emphasis is placed on weak evaluation results, or there is a lack of attention to local conditions such as when supposed best practices are universally mandated. nonuses have been differentiated as: due to misevaluation, political nonuse or aggressive nonuse (patton, ). nonuse due to misevaluation can be justified when evaluation results in weak evidence, a late report, poor evaluator performance or other failures such as not adhering to professional standards. political nonuse occurs when findings are ignored because they conflict with a potential user’s values, prejudices or preferences. aggressive nonuse is calculated and refers to situations where use is undermined because results conflict with or raise questions about a preferred position. unintended effects of evaluation are any use of findings or evaluation processes that were not planned, predictable or were unforeseen. another area of significance to evaluation theory involves differentiating the purposes and processes of evaluation, from the purposes and processes of monitoring, accountability, performance management and auditing. monitoring systems are intended to assist internal managers with information on where management strategies would be beneficial. accountability involves holding someone accountable to someone else to justify or explain what has been done, and traditionally attends to external stakeholders that a program is responsible to, or to funders (patton, ). it has been argued that accountability is primarily political, and does not provide sufficient information for decision making. performance management is the “production of information about an organization’s actual outputs and results (outcomes) as measured against its mission, goals, objectives, and targets” (julnes, , p. ). auditing compares the degree of correspondence between what a program reports and what is considered proper (chelimsky, ). performance management and evaluation have been considered complementary tools to measure and manage performance (lahey and nielsen, ). “evaluation is necessary to validate performance-monitoring data and, of course, to assess impact. but it can be costly and time consuming, and often the results may not be available in time to inform the next stage of portfolio development or other decision making. performance measurement, in contrast can provide real-time data useful in day-to-day decision making” (boris and winkler, , p. ). where programs lack the capacity to undertake formal evaluations, they can collect information through internal performance monitoring, and as long as the program appears to be achieving reasonably positive results, performance management can suffice, at least for the short term (boris and winkler, ). performance management has been described as “the set of self-correcting processes grounded in real-time data measuring, monitoring, and analysis, that an organization uses to learn from its work and to make tactical (front line, quotidian) and strategic adjustments to achieve its goal and objectives” (hunter and nielsen, , p. ). however, it has been argued that performance indicators are useless for problem solving, decision making or resource allocation because they do not explain why results are as they are (patton, ). the principle shortcoming of performance management is that the validity of these data can be questioned, and they do not demonstrate, in the way evaluations do, that changes observed were caused by the program or intervention” (boris and winkler, , ). performance measurement emphasizes storing aggregated information, while program evaluations disaggregate information explaining on a more detailed level why performance was high or low, contributing to an understanding of how to make improvements (hatry, ). chelimsky ( ) argued that both auditing and program evaluation are useful for program formation and accountability, and are complementary. program evaluations have long borrowed accounting methods for cost-benefit or cost-effectiveness analyses. while auditing asks normative questions, comparing what a program reports to established criteria, program evaluation does ask normative questions, but more frequently asks descriptive questions, and involves systematic research of a program’s design, implementation and effectiveness. auditing supports deductive reasoning, while program evaluation reasons deductively, but also reasons inductively (probabilistically). both approaches are retrospective, systematic, focus on relevance to users, and are concerned with objectivity. while auditing tends to “record and store data in a linear, chronological way”, program evaluation “tends to group data with an eye toward the ensuing analysis and the demonstration of patterns and relationships in the data” (p. ). auditors are independent from clients but evaluators tend to work closely with clients collaboratively (wiser, ). evaluation theory involves a body of principles that explain and provide direction to the practices of evaluation (mathison, ). many areas of disagreement existed throughout the field’s history (shadish, cook and leviton, ) and still exist today (smith and brandon, ). questions include: why should evaluation be done; is the purpose of evaluation validation, accountability, monitoring, improvement or development; is beneficial social change best accomplished by changing present programs or creating ideas for future programs; what is the role of the evaluator; how are stakeholders best involved; should evaluation be managed primarily by evaluators or in collaboration with stakeholders; should evaluators should focus on users, and if so which ones; whose criteria of merit should be considered for judging programs; should programs be evaluated compared to each other or to absolute standards; whose values should be represented in evaluation; what questions should be asked; what is acceptable evidence for making evaluative decisions; which methods would best be used to answer which questions; what can the evaluator do to facilitate use; and what are possible risks of oversimplifying social knowledge. these questions remain unresolved today and are addressed by the body of principles that comprise evaluation theory. . defining disability management having a clear definition of a domain facilitates understanding evaluation practice within that domain. disability management involves multi-disciplinary health, safety and return to work processes, which are proactively applied within organizations to minimize the economic and social costs resulting from time off work due to illness or injury. during the s and early s costs of disability in the workplace reached crisis levels (dunn, ). early disability management programs, “emerged in the s as a response of self-insured employers in the usa to rising costs of disability and injury. the management of employees with disabilities is now an issue in countries around the world” (westmorland and buys, , p. ). since the mid s disability management, “has come into its own as a profession and as a viable workplace strategy to reduce the human and economic cost of disability” (galvin, king, knuelle and rushby, , p. ). disability management has been defined as combining, “the clinical and case management practices of vocational rehabilitation counseling, the multi-disciplinary team approach of rehabilitation, and principles of organization development and program administration into a comprehensive framework that is managed and coordinated within the firm” (tate, habeck and galvin, , p. ). critical to disability management programs are return to work processes, which when successfully applied, include: teamwork, management support, written policies and procedures, education and communication, and comprehensive job evaluations (strasser, ). facilitation of early and suitable transitional and long term employment is achieved through the work of multi-disciplinary teams wholly committed to the same goal. team participants typically include management, workers, unions, health and safety personnel, occupational therapists and employee health nurses. case management has increasingly been identified as a core function of disability management (rosenthal, hursh, lui, zimmermann and pruett, ). during the early years of disability management case management was grounded in a biomedical focus, assisting workers to return to work after medical treatment in order to minimize (financial) costs associated with extended time off. more recently disability management has increasingly embraced using multidisciplinary data to assist case managers who are responsible to make decisions (rosenthal, et al., ). in addition to managing disabilities, disability management has evolved to include health promotion and prevention of illness and injury. job task analyses, ergonomics, health incentives, and employee assistance programs have emerged within disability management as means to improve overall well being (bruyere and shrey, ; dyck, ). as these other disability management practices have emerged, programs no longer limit their focus primarily to medical treatment, return to work and economic cost benefit assessments (young, roessler, et al., ) and now take into consideration social, psychological, motivational and educational orientations, systems, and organizational and management structures, including preventative interventions. disability management programs have evolved over the past two decades into rich team based and educational processes, which to succeed depend upon effective communication systems and the participation of multiple stakeholder groups (currier, chan, berven, habeck and taylor, ). programs are no longer preoccupied with medical based teams and systems that facilitate timely return to work after disabilities have occurred, and rely more on organizational awareness and commitment to contextual integration. typical stakeholder motivations include: (a) worker (health, financial stability, happiness); (b) employer (financial viability, productivity, safety/security); (c) health care providers (financial viability, client health); (d) payer (financial viability, profitability, public image); and labour (rights of workers, job accommodations) (franche, baril, et al., ; young, roessler, et al., ; young, wasiak, et al., ). benefits from employment beyond financial remuneration include work environment bonding, through which the formation of an individual’s self-concept is often deeply rooted in one’s occupational identity (shrey, ). work activity regulates life activities (galvin, et al., ). unemployed individuals stand to lose their social network, self worth and positive identity, which are often tied to their ability to function as valued participants within the labour market, “work provides more than a task, it provides meaning” (curtis and scott, , p. ). the unemployed worker’s existence has become provisional and in a certain sense he cannot live for the future or aim at a goal (frankl, ). unemployed persons can come to feel unemployable. human rights legislation in canada requires employers to accommodate persons with disabilities in the workplace, provided that in doing so employers do not sustain undue hardship. undue hardship refers to either financial costs that would make an organization insolvent, or, outcomes that could lead to health or safety risks (eakin, et al., ). the world health organization (who) has developed an international classification of functioning, disability and health to define and measure disability (world health organization, ), the overall aim of which is, “…to provide a unified and standard language and framework for the description of health and health-related states” (p. ). in developing the who disability assessment schedule, “a series of systematic field studies was used to determine the schedule’s cross-cultural applicability, reliability and validity, as well as its utility in health services research” (ustun, kostanjsek, chatterji and rehm, , p. v). the classification, “…has moved away from being a ‘consequence of disease’ classification ( version) to become a ‘components of health’ classification” (world health organization, ). smart ( ) pointed out that this new perspective is an individual-driven rather than diagnosis-driven system of interdisciplinary collaboration, where physicians will no longer be the sole authority on disability, and where accommodation and rehabilitation are advocated. in summary, return to work outcomes have the potential to impact many different individuals and organizations: workers, employers, payees, health care providers and society, and factors related to those individuals and organizations complicate the disability management process (franche, baril, et al., ; loisel et al., ; young, wasiak, et al., ). distinct models have been conceptualized in the field of disability management reflecting the various stakeholder group perspectives. the following section describes disability management paradigms that have emerged. . models of disability and return to work based on a systematic analysis of the theoretical and empirical literature on disability related to musculoskeletal pain, schultz, crook, fraser and joy ( ) identified five main conceptual models of diagnosis and rehabilitation in occupational disability. these were a biomedical model, psychiatric model, insurance model, labour relations model, and biopsychosocial model. the biomedical model has been and continues to be the predominant framework for many health care professionals. in this model impairment is related to anatomical tissue damage. the mind and body are separate entities, and psychological, social and behavioral dimensions are relatively unimportant, and often are identified as functional overlay. the physician is considered responsible for control and relief of the problem, and the one upon whom the patient can rely. this model offers a scientific approach valuable in cases of ruling out serious medical conditions, but can be restrictive in diagnosing pain when there is limited evidence of patho-anatomical defects. the psychiatric model holds three fundamental beliefs: pain is either organic or psychological in origin; pain that cannot be attributed to physical causes must be psychological; and persons with undiagnosed intractable pain are a psychologically homogenous group. this model supports that persons either respond normally or abnormally to pain, where abnormal responses grossly out of proportion to the organic pathology can be evidence for diagnosing a mental pain disorder. diagnosis of psychological pain disorder can become a chronic problem. this model is valuable for persons diagnosed with psychiatric disorders. the insurance model is also referred to as a forensic or compensation model. the major tenet of this model is that persons who are claiming financial benefits through compensation or litigation may be dishonest about their symptoms, for purposes of financial gain or to be relieved of their workload. this model shares with the biophysical model the need for objective evidence of biopathology. the labour relations model is a systems based model where work injury is primarily understood and managed within the sociopolitical context of the work place, rather than in terms of medical management. the premise is that employment security is critical for workers with disabilities, and the employer is responsible to provide work place accommodations, and physical, psychological and social preventative education programs. this model requires supportive policies and procedures and effective communication system wide. the biopsychosocial model views disability as integrated and multifaceted, “the model recognizes that the relationship between pain, physical and psychological impairment, functional and social disability is far from simple: pain and response to injury are complex and interactive phenomena” (schultz, et al., , p. ). one tenet of this model involves a conceptual distinction between impairment and disability. impairment is loss of function, and disability occurs when contextualization of that impairment results in a decreased capacity to meet related demands or to perform intended functions. another tenet is that organic pathology alone does not predict impairment or disability, and psychological and social cultural factors play major roles in responding to disability. the biopsychosocial approach, “… has been modified in many different forms and is generally the most commonly considered and consensual framework for understanding the multidimensional aspects of many health problems” (schultz, et al., , p. ). the biopsychosocial approach is best classified as including both a systems and an individual focus (schultz, et al., ). more than other models (except perhaps the ecological/case management model) the biopsychosocial model takes a broader psychosocial perspective and best explains the disability continuum. the disability continuum involves the individual (physical and psychological impairment related to structure and function) and the contextual system related factors (such as workplace and treatment programs). basic tenets of the model also include underlying values, cognitions, stage of readiness for return to work, self-efficacy, targeting of psychosocial factors in treatment, and interdisciplinary psychosocial prevention factors. the labour relations and biopsychosocial models have the capacity for enhanced interdisciplinary and functionally oriented assessments and workplace multi-specialty interventions that have proven to reduce the risk of chronic pain (schultz, et al., ). loisel and durand’s ( ) conceptual model of disability management, the sherbrooke model, is a most comprehensive model where actions and attitudes of key stakeholders, and health care and compensation systems are critical (schultz, et al. ). central to the sherbrooke model is the importance of situating work rehabilitation in the workplace (loisel and durand, ). the strategy includes an early work site based rehabilitation process graded to match improvements in the worker’s capabilities, with progressive augmentation of work demands, and simultaneous ergonomic intervention to permanently reduce excessive work demands. the goal is to return workers to regular work, rather than striving to cure a disease. the usual medical and worker participants at a clinical treatment site are replaced in the sherbrooke model with groups of participants (worker, rehabilitation multidisciplinary teams, employer, attending physician, union) at the actual work site but with reduced duties. in summary, disability management was originally medically focused and aligned with labour relations, and emphasized the employer’s responsibility to provide work accommodation. due to multiple stakeholder motivations, different paradigms of disability and return to work emerged and have continued to evolve. the predominant medical focus has declined, and more disability management has incorporated aspects of biopsychosocial approaches, which consider multiple factors. . evaluation of disability management . . literature reviewed. this study is an exploration of evaluation in the field of disability management to develop an explanation of the nature of evaluation as it is currently practiced. over the past two decades little has been published regarding evaluation of disability management, while much has been published about the expansion of this industry worldwide during the same period. i based my initial conclusion that little had been published about disability management evaluation on my literature review that included sources listed in table . table sources of literature reviewed at the onset of this study database pubmed (also known historically as medline and index medicus) – produced by the us national library of medicine (covers all aspects of medicine, including disability evaluation; approximately % foreign coverage outside north america) database psychinfo – produced by the american psychological association (psychological aspects of disability) database nioshtic – produced by the us national institute for occupational safety and health (disability from an osh perspective; primarily us coverage, but some international) database hseline – produced by the uk health and safety executive (disability from an osh perspective; includes european literature) database cisdoc – produced by the international occupational safety and health information centre (cis), international labour organization (disability from an osh perspective, world-wide coverage) database eric – the education resources information center, an online library of education research and information sponsored by the institute of education sciences (ies) of the us department of education. evaluation journals i reviewed three evaluation journals for up to years prior books edited and authored books on disability management conferences disability management conference manuals & compendiums worksafebc library internal reports and non indexed holdings note: i have subsequently reviewed other evaluation journals over years and there were no articles specific to evaluation of disability management related to employment. i was assisted to access some sources by the head librarian at the worksafebc library. keywords that were used related to disability management and evaluation. there was no time limit placed. the language chosen was english. review of these sources turned up publications on disability management dated between and , from canada, us and outside north america. a total of publications were obtained. i reviewed all publications in depth. a total of included views on or recommendations for research or evaluation of disability management programs. in a subsequent review of a volume of the journal of occupational rehabilitation dedicated to disability management, and the edited handbook of complex occupational disability claims (schultz and gatchel, ), a further publications related to disability management were identified, with of those referring to a need for program evaluation or research studies on disability management programs. . . disability management evaluation. while disability management programs have evolved and the industry has expanded over the past two decades, little has been published regarding evaluation of disability management. evaluation methods reported within the disability management literature have commonly focused on summative measures which relate to economic outcomes, such as return to work rates, incidence and duration of absence, lost productivity, and benefit cost reduction (akabas, gates and galvin, ; currier, et al., ; dunn, ; mcmahon, et al., ; pransky, shaw, franche and clarke, ). the complex issues associated with work related disabilities have been analyzed in somewhat of a simple manner (shrey and olsheski, ). throughout the s there was expanding recognition of issues related to employment for persons with disabilities, in part due to the american disabilities act being signed into law during (akabas, et al., ). disability management focus shifted from return to work outcomes to incorporating services such as transitional work, ergonomics, worker perspectives, health and wellness promotion, and building bridges between employees, employers and the community stakeholders. additionally, the early s medical model of disability and return to work was giving way to contextualization and consideration of psychosocial issues. with this redirection there was a greater need for rehabilitation professionals (other than medical doctors) to work in disability management, to contribute their expertise (gottlieb, vandergoot and lutsky, ). rehabilitation professionals were increasingly expected to contribute to policy and program decisions, and to monitor effectiveness of program activities toward making improvements in prevention and treatment. the focus of disability management, which had typically only monitored workers until they returned to their original work (roessler, schriner and fletcher, ) shifted toward collaborative partnerships among different stakeholder groups (employers, workers and rehabilitation professionals), who were working toward providing services that not only restored work abilities, but also led to durable return to work and job satisfaction. examination of disability management from the perspective of human services was recommended (tate, , p. ). there was a growing awareness of outcomes related to disability that had seldom been addressed. these included non- monetary costs to employers and direct costs to workers such as: individual loss of self- esteem derived from work and interaction with one’s peers, emotional and psychological distress affecting the disabled worker’s family and friends, and a sense of worthlessness and of being deprived of one’s occupational role in society (tate, et al., ). however, evaluations of disability management programs did not explore individual experiences regarding return to work, or personal perceptions of workplace issues (eakin, et al., ). in the s, evaluation of disability management was on occasion considered important, but few actual program evaluation studies were reported, a trend that continued into the s (currier, et al., ; dunn, ; pransky, et al., ). disability management evaluation has mainly been conducted by economists, and evaluations of private non public sector organizations were practically nonexistent (dunn, ). program evaluation methods for disability management were poorly understood (dyck, ; dyck, ). dyck ( ) suggested that evaluation should identify gaps between the current state of a program and the desired outcomes such as achieving the goals of cost effectiveness and return on investment, and focus on development of program improvement strategies relating to service quality and delivery. in summary, over the past two decades little has been reported on the nature and extent of evaluation in disability management. however, the literature illustrates a sense of importance of evaluation. evaluations of disability management programs were needed, ones that “…involve all relevant stakeholders, consider legal, professional, administrative and cultural environments and aim at developing new global return to work strategies that are effective, efficient and have potential for successful implementation” (loesel, et al., , p. ). quality disability management was seen as relying on evaluation that links interventions to outcomes, that examines efficiency and accountability, and that emphasizes improvement (nickerson, ). . research and evaluation while both evaluation and research have consistently been conceptualized as important to disability management, the literature has not always clearly differentiated between the two. publications have recognized either or both as needed for their potential to provide the opportunity to monitor, understand and improve disability management. there has been a resultant tendency in the literature for the purposes of doing evaluation versus doing research to become blurred in their uses to monitor disability management. evaluation’s universal focus on stakeholder perspectives is an essential element in any evaluation, a feature not shared by social science research (mathison, ). evaluation’s focus on stakeholder perspectives is particularly relevant for the study of disability management. recognizing that stakeholders have competing goals and varying definitions of disability and what constitutes return to work, researchers need to consider what matters to stakeholders (young, wasiak, et al., ). young, roessler, et al. ( ) recommended improvements to return to work research that includes: (a) development of a set of consistent conditions of key terms applicable across all contexts and stakeholders; (b) improved understanding of outcomes that matter to stakeholders; (c) addressing complexity of return to work outcomes by exploring the relevant variables related to various disability management paradigms; and (d) understanding return to work as a dynamic process. a limitation of prior return to work research had been due in part to a narrow focus on outcomes (time off work or performance deficits), rather than focusing on issues that could predict successful return to work. recognizing how prior studies on return to work had suffered conceptual and methodological limitations, expansion from biomedical to broader biopsychosocial understandings had been recommended (pransky, et al., ). the paradigm shift from biomedical to biopsychosocial perspectives transfers, “…responsibility for outcomes from the health care provider – patient perspective, to a multi player decision making system influenced by complex professional, legal, administrative and cultural (societal) interactions” (loisel, et al., , p. ). understanding is required of the perspectives of multiple decision makers, the patient, physician, employer, occupational health staff and third party payers, each with their own values, objectives, interests and training. noting that communication between healthcare providers and workplaces rarely occurred and may be difficult to practice, loisel, et al. ( ) suggested, “future studies should involve all relevant stakeholders, consider legal, professional, administrative and cultural environments and aim at developing new global [return to work] rtw strategies that are effective, efficient and have a potential for successful implementation” (p. ). conceptualization of research that could address preventative developments in disability management would require special skills to face difficulties working in, “…complex fields with many stakeholders with various interests, important intervention costs, ethical issues and system variations” (loisel et al., , p. ). given that evaluation methods are consistently grounded in consideration of stakeholder motivations, it may be inferred the role of program evaluation is more ideally suited to achieve this type of investigation, than the role of research. research studies have recommended increased evaluation and accountability. in a survey of disability management specialists, three knowledge domains were recommended: ( ) program development, management and evaluation; ( ) disability case management; and, ( ) disability prevention and workplace intervention. each of these areas was thought to have the potential for harm if practiced incompetently. to accomplish this disability management managers must, “…truly understand research and encourage their employers, unions and other interested stakeholders to become involved in collecting data, applying research standards, and using data via superior data management strategies to make valid decisions that positively affect productivity and lead to more efficacious cost-containment approaches.” (rosenthal, hursh, lui, ison and sasson, , p. ). . disability management evaluation contextualized within the evaluation field reported evaluation of disability management to date has mainly focused on summative measures related to economic outcomes such as return to work rates, incidence and duration of absence, lost productivity and benefit cost reduction (akabus, gates and galvin, ; currier et. al., ). these evaluation criteria reflect values of the employers who are the funders of labour (westmorland and buys, ). that approach may have made sense at the time the field of disability management was starting to develop over two decades ago, when the primary stakeholders were the worker and the employer. at that time disability management followed a medical paradigm, where management of a worker’s impairment was largely under the control of the physician, including deciding when and under what conditions a worker could return to work, and the employer was responsible for accommodations with suitable job tasks. workers had little control over how they managed their impairments or their presence at the work place (smart, ). during this same period through the late s and s that disability management was starting to develop from being based primarily on a medical paradigm with evaluation conducted primarily from the perspective of employers or funders (westmorland and buys, ), evaluation theory had progressed to include pluralistic approaches. evaluation had advanced away from being based primarily on the s scientific approach measuring cause and effect, and evaluation that was prescribed predominantly from the perspective of evaluator values. during the s and s evaluation theory had evolved to include pluralistic approaches that incorporated the values of multiple stakeholders, to make evaluation more relevant to its primary stakeholders and with a goal of increasing evaluation use (shadish, cook and leviton, ). during the s disability management started to shift away from a predominantly medical paradigm to incorporate the interests of multiple stakeholders, (i.e. workers, unions, safety personnel, medical practitioners other than physicians etc.) (galvin, et. al., ). typical stakeholder values expanded to include: workers’ health, financial stability, rights at the workplace, job satisfaction, organizational learning about safety, prevention of injuries and illnesses, financial viability, ergonomics, etc (dyck, ). reported evaluation of disability management did not advance to include multiple stakeholders’ values during that same period of disability management expansion. it has been most recently, during the s, that increased consideration has been given to shifting disability management away from a medical paradigm where physicians managed impairments, to biopsychosocial approaches, where workers manage their impairments at the workplace ideally (loisel, et. al., ). advances in this direction have been supported in the field, including by the world health organizations which in implemented a new international classification of functioning, disability and health focusing on the person and placing emphasis on impairment interactions with their environment. ideally, disability management evaluation will progress to meet the expansion of stakeholders’ interests in the field, and to meet advances in the evaluation field in general. no doubt disability management evaluation will face the same ongoing struggles as evaluation has regarding: questions about how to best include pluralistic stakeholder values in evaluation, what purposes of evaluation to prioritize, which stakeholder values to prioritize, what evaluation criteria to use, funding concerns, and how to maximize use of findings. . summary many different operational definitions and paradigms have been reported in the body of literature on disability management as it has emerged and continually developed over the past two decades. reporting on evaluation of disability management programs has been scarce. the present study will explore disability management evaluation within a sample of four sites, each representing a different paradigm: biomedical, labour, biopsychosocial and insurance. chapter : research methodology . obtaining and maintaining ethical consent for this study the procedures and timeline that i followed to obtain and maintain ethical consent are outlined in table . . research questions # . what is the extent and nature of evaluation practice within the disability management programs? # a. how does disability management evaluation practice vary depending on whether the organization is a learning organization? # b. how does disability management evaluation reflect diversity? # c. is disability management evaluation grounded in a particular paradigm of disability and return to work? . selecting which paradigms to include in this study this study focuses on evaluation at four sites each representing a different dominant disability management paradigm: biomedical, labour, biopsychosocial and insurance. in part the study explores the extent to which evaluation practices at the sites may reflect the interests associated with different paradigms. much has been published on the history of disability management, including how originally the field was based on a biomedical perspective. as other stakeholders’ interests became more prominent in the field (workers, employers, insurance funders, multi-disciplinary treatment teams, unions) disability management expanded and evolved to include those multiple perspectives. paradigms have emerged in the field representing the diversity of stakeholders, and may reflect different approaches to, or emphases in, evaluation practices. table timeline followed to obtain and maintain ethical consent date procedures for ethical consent november , obtained certificate of completion for having completed the: interagency advisory panel on research ethics’ introductory tutorial for the tri-council policy statement: ethical conduct for research involving humans (tcps) november , submitted ethics application to the university of british columbia office of research services behavioral research ethics board for authorization to conduct research involving human participants. november , received provisos from ubc behavioral research ethics board required for modification of the ethics application. december , resubmitted ethics application to ubc behavioral research ethics board with required provisos incorporated. december , completed final revision of page informed consent form to be provided to potential participants of study (see appendix a). december , received university of british columbia behavioral research ethics board certificate of approval # h - to conduct research for one year to november , . january met at three sites of proposed research organization and obtained three signatures of approval required before submitting application to vancouver coastal health research center authority clinical trials administration office requesting approval to conduct low risk research within that organization. february , submitted application to vancouver coastal health authority clinical trials administration office for approval to conduct low risk research. march , received vancouver coastal health authority clinical trials administrative approval to conduct research study # v - . november submitted application to ubc behavioral research ethics board for a one year extension of the ethics approval november to november . december one year ethics extension approved by ubc behavioral research ethics board to continue study november , to november , . december submitted application to ubc behavioral research ethics board for a one year extension of the ethics approval december to november . december one year ethics extension approved by ubc behavioral research ethics board to continue study december , -december , . four sites were selected for this study to represent the disability management paradigms: biomedical, labour, biopsychosocial and insurance. these paradigms are representative of the differing approaches common to disability and return to work. while these models share common characteristics, they are unique in important ways, (currier et al., ; franche, baril, et al., ; young, roessler et al., ; and young, wasiak et al., ). in selecting the sample of paradigms to include in this exploratory study, a main objective was to include paradigms that had the potential to contribute perspectives of disability management and it’s evaluation that were as diverse as possible. four of the five paradigms identified by schultz et. al ( ), biomedical, insurance, labour and biopsychosocial, are each identifiable as a main paradigm within many disability management programs in operation today, and were included in this study. the fifth paradigm defined by schultz et. al. ( ), psychiatric paradigm, was not included in this study. based on my twenty plus years experience practicing in the disability management field i am not familiar with any disability management programs that are based primarily on a psychiatric paradigm. i will give examples of two types of disability management programs (neither of which would be primarily oriented to a psychiatric paradigm) that would serve clients that would fit the definition for psychiatric pain disorder as described by schultz, et. al ( ) for the psychiatric paradigm. for clarification, the biomedical paradigm assumes a medically diagnosed organic pathology with symptoms proportional to the pathology, and that are objectively identifiable. the psychiatric paradigm makes the same assumptions, but the psychiatric paradigm also assumes that people with symptoms that are not in keeping with the organic pathology are a homogenous group with a diagnosable mental disorder (understood to be a pain disorder due to exhibiting symptoms that exceed what would be expected for that pathology). there are at least two types of disability management programs (that i am aware of) that serve clients with diagnosed psychiatric pain disorders as defined by the psychiatric paradigm (schultz, et. al., ), but neither of these types of programs serve only these clients, or even primarily these clients. the first type is usually called a pain program, and is offered by various providers in the community. these programs involve multi-disciplinary clinical services with a high ratio of clinicians (from areas that include psychology, physiotherapy, occupational therapy, vocational rehabilitation, physiatrist, medicine, etc.) providing education and treatment to assist clients cope with excessive pain and maximize their functioning. these programs serve both: ( ) clients whose pain symptoms are commensurate with their pathology and would be categorized under the biomedical paradigm; and, ( ) clients with symptoms that exceed what is expected for their pathology and would be categorized under the psychiatric paradigm; as defined by schultz, et. al. ( ). the second type of program that serves clients whose pain symptoms exceed what is expected for their pathology, and would be categorized under the psychiatric paradigm, is typical of the labour site program included in this study. these programs are often offered by employers for all of their staff who have sustained illnesses or injuries, including physical or mental, resulting in disability. these programs serve clients with physical disabilities, mental illnesses and who would be diagnosed as having a pain disorder according to the definition by schultz, et. al, ( ). as described in this study, clients with mental disorders, including illnesses or pain disorders, have often faced stigmas due to their disability not being visible to others within their environment especially at the work place, and efforts are usually made to integrate them into the workforce without differentiating them from clients whose disabilities are physical and visible to minimize these stigmas. . evidence of different paradigms within the sample of sites to identify sites that were representative of the four paradigms included in this study, the key elements of each were reviewed. table summarizes the key elements of the four paradigms as described in the literature. table key elements of paradigms of disability and return to work biomedical  illness is due to a physical pathology  symptoms are directly proportionate to physical pathology  physician is responsible for diagnosis and treatment labour  work injury is managed best within workplace context  needs of workers and employers can be complementary  employer is responsible to accommodate return to work  medical diagnosis is secondary to matching job demands to functional capacities biopsychosocial  interdisciplinary whole person approach  conceptual distinction between impairment and disability  organic impairment does not reliably predict disability insurance  people who anticipate secondary gain are likely to magnify disability  objective medical proof of impairment and disability must be proven based on: schultz, i.z., joy, p.w., crook, j., & fraser, k. ( ). models of diagnosis and rehabilitation in musculoskeletal pain-related occupational disability. journal of occupational rehabilitation, , - . i drew upon my own knowledge regarding sites from the past years in my professional interactions with disability management programs, to identify sites that had characteristics mainly representative of one of the four paradigms. the particular programs selected for possible inclusion in this study were initially identified based on my understanding that the program services matched characteristics for one paradigm as documented in the literature. the four paradigms do overlap to some extent, and each program may have some characteristics of other paradigms, but less so than the predominant paradigm that it was selected to represent in this study. i was familiar with one person at each of the four sites selected for this study prior to initially contacting them. confirmation that the sites were predominantly representative of the paradigms was obtained during the interviews conducted with participants from each site. the purpose of selecting sites from different paradigms was not to analyze the degree to which fidelity of paradigms was present within the sites, but was to maximize variation and the opportunity to access as diverse a sample of participant perspectives as possible, representing different priorities and values, with the potential to contribute variation and depth of understanding regarding disability management evaluation. . . biomedical paradigm site. this site is an independent for profit organization contracting to provide assessments and return to work (or return to school) services after a disabling injury or illness. services are provided to external clients from any referral source. clients may be of any age, but most are adults and formerly employed. all services are provided to individual clients, there are no group programs. services include: functional capacity evaluations, job demands analyses, ergonomic job site modifications, and gradual return to work plans. the agency contracts to work for external referring funders. they first establish a client’s functional capacities, and critical job demands of their regular work, and second develop and monitor a return to work plan that integrates ergonomic adjustments. the main goal is to provide verifiable information on functional capacities, based on standardized measurement tools. one of the participants interviewed at this site referred to their services as “part of what they call health care services”. this site illustrates characteristics of the biomedical paradigm of disability management where impairment is predominantly related to anatomical tissue damage, and where other dimensions (psychological, social, behavioural) are relatively unimportant (schultz et al., ). demonstration of maximum effort to objectively verify functional capacities is measured with a combination of data sources including body mechanics, muscle wasting and comparisons of measurements such as bilateral grip strengths etc. conceptualization of disability according to this paradigm, “…conforms to a positivist approach in which the disease is an obvious and observable biological problem that needs correcting with the scientifically proven techniques of biomedicine” (schultz et al., , p ). . . labour paradigm site. this site is an in-house program available to - , employees of a large organization providing services to stay at work, return to work, or adjust to permanent disabilities after they have sustained injury or illness. this program was developed during the late s when employers in british columbia were increasingly required to comply with duty to accommodate legislation, which was one of the underpinnings of the current program. at the time, many employees in this organization were off work and in receipt of long term disability benefits through an outside carrier with no way to return to work. this program was originally developed to assist them to transition back. currently, participation in this program is voluntary, and the only requirement is that the employee has a medical condition (physical or cognitive) as the program is not intended for resolution of labour relations issues. the labour site is guided by a joint labour-management steering committee for all policies and procedures, and operated by four coordinators. program coordinators are responsible for two main services: liaison between all other parties, most notably employees and their managers while employees are off work being treated for medical conditions; and assisting employees to either stay at work, return to work in suitable job duties, or adapt to withdrawal from the workforce due to being functionally unemployable. none of the program’s four coordinators or the employees’ managers is advised of the employees’ medical diagnoses, only functional limitations. nor do they decide when a client is able to return to work. during medical treatment program coordinators provide a written summary of the critical job demands of the employee’s regular job to the treating physician (e.g. multi-tasking, concentrating, working independently, managing a large volume of work, working with a complicated new computer software system). the treating physician then completes a functional abilities evaluation checklist outlining functional limitations and timeframes for returning to work. program coordinators pass this information on to the employee’s manager, who is then responsible to identify suitable job duties. program coordinators work collaboratively at the job site overseeing the employee’s participation in accommodated duties, assessing and making adjustments as required. this site is characteristic of a labour paradigm as described by schultz et al. ( ) where disability management is primarily understood and managed within the sociopolitical context of the work place, with no program involvement in management of medical treatment. schultz et al. ( ) explained a labour relations paradigm focuses on, “…workplace characteristics such as climate, culture, organization, job demand and accommodation, policies, procedures, and practices” and “effective disability/case management” (p. ). . . biopsychosocial paradigm site. this site is situated within a large government funded multidisciplinary health service organization that provides inpatient, outpatient, outreach and clinical support services. the site operates four unique programs: acquired brain injury, spinal cord injury, arthritis, and neuromusculoskeletal, and has a program for adolescents and young adults. a broad range of in-house clinical services are offered. this organization serves, ( ) inpatient clients that have medical referrals, and ( ) outpatient clients referred by any source including allied health professionals, other organizations, or self referred. clients are adults or youth, but not children or adults over approximately age , as both of those groups are served by other organizations. a biopsychosocial paradigm program recognizes injuries are complex and interactive including physical, psychological and social aspects of disability (schultz et al., ). a feature of this site is that it is multidisciplinary (problem solving draws from multiple disciplines) and interdisciplinary (disciplines work together), where clients are almost always imbedded in multiple treatment programs. at the same time that clients are accessing the biopsychosocial site for vocational rehabilitation, they are also accessing other services available to them within this organization, including: psychological counselling, social work, sexual health, drug and alcohol counselling, pastoral services, occupational therapy, physiotherapy, nursing care, specialized surgical support, speech language pathology, dietary counselling, assistive technology, orthotics, physiatrist, recreation therapy, peer mentoring, music therapy, art therapy, pet therapy, adolescent young adult program services, and spinal cord or brain injury education. the services of this disability management program are related to employment. some clients have never previously worked and want to, these are often adolescents and young adults. some are trying to maintain a job, and due to effects of an injury or illness may need work site accommodations. some are returning to work after an injury or illness and require assistance communicating with the employer regarding required job accommodations or alternate positions within the same company. some have to change jobs completely, and may be looking into new occupational directions that require training. some want to switch to self employment. some clients cannot return to work due to disability or illness, and this program helps them adjust to the realization they will need to access disability benefits rather than earning employment income, and will have to explore new ways to find quality of life. many clients of this program are in receipt of benefits such as long term disability, and require assistance from this program to liaise with external insurance carriers, or to understand how to access whatever assistance they may be eligible for. . . insurance paradigm site. this site is the investigation unit of a large public organization that handles injury claims within one of their divisions. the insurance site conducts investigations into disability claims, employers, health care service providers, vendors the organization deals with, and employees of the organization within which the insurance paradigm site exists. the insurance site investigators provide information to the division of the organization that manages injury claims. injury claims are adjudicated by case managers who obtain the information required to make decisions and adjudicate claims from multi- disciplinary internal and external medical professionals. case managers seldom attend meetings with people outside their offices, rely mainly on telephone contact, and can lack effective interviewing skills. when information that case managers have accessed is confusing, conflicting or incomplete, in order to minimize the risk of making inaccurate assumptions they can request assistance from the insurance site investigators who are skilled interviewers. the insurance site investigators are often called field investigators due to the time they spend obtaining objective information in the field. all internal staff participating in these case management processes are bound by provincial government ethical practices for working with the public. the insurance site receives internal referrals from the disability claims division of the organization to investigate claimants. external referrals can come from any source, such as employers, neighbours of claimants, or through an anonymous tip line. referrals regarding investigation of employers, service providers or vendors similarly can come internally or externally. referrals to investigate internal staff of the organization come from upper management. the goal of the program is to obtain accurate information to alleviate misunderstandings so that fair adjudication of entitlement to benefits can be conducted, and to protect the integrity of the accident fund. some services such as surveillance or investigative accountants are contracted out. each case referred to the program is overseen by one of the - investigators providing services for the insurance site program. the insurance model of disability management shares with the biomedical model an emphasis on verifiable medical evidence of impairment. from an insurance paradigm perspective disability symptoms, “…may be a manifestation of attempts to receive compensation for disability” (stowell and mcgeary, , p. ). this model assumes some, not all, individuals are faking disability, and has a strong moralistic element where it is necessary to clearly differentiate between honest and dishonest clients, to differentiate those faking disability for benefits, from those actually disabled and entitled to benefits (schultz et al., ). . other characteristics of the disability management programs disability management programs differ in a number of respects other than the paradigms described above. understanding nuances of each program is necessary for exploration of evaluation practice. table summarizes estimated numbers of incoming referrals and workloads at each site of this study. table annual incoming referrals and caseload sizes site number of caseloads at site annual referrals to program approximate caseload sizes biomedical bm - bm - bm bm - labour biopsychosocial - - insurance - , - , note: all figures are estimates that can vary year to year. bm managed long term cases lasting up to months, bm managed short term cases lasting several hours to several days. other program characteristics at the sites of this study include: types of services provided, definitions of disabilities, funding sources, referral sources, in house or external clients, other programs that may coexist within the organization, and client demographics, such as age. table summarizes characteristics of the four sites in this study. disability management occurs at different points along a continuum of treatment and recovery after onset of disability has been acquired: ( ) stay at work assistance is table characteristics of the sites participating in this study bm labour bpsy insurance program objectives assessments x stay at work x x x return to work x x x adjust to being unemployable x x x investigations for information x referral sources client self-referral x x funding agencies x x x health providers x x employers x x anonymous x clients in house employees x x in house clients x x external funded clients x x external individual clients x x types of disabilities physical illness or injury x x x x mental illness x provided preventatively before a worker or student has to go off work or leave school to avoid his/her having to go off, through interventions such as modification of activities to meet the new physical or cognitive limitations associated with the disability; ( ) to assist a worker or student’s timely return to meaningful and suitable work or school after his/her condition has reached workable but not full recovery; and ( ) to assist a person to adapt to meaningful and satisfying life activities where consequences of the disability will preclude a return to his/her usual work or school activities. programs may serve in-house employees/clients, for example, employees of an organization that has an internal staff disability management program, or clients of a treatment agency that includes disability management among its services. alternatively, programs may contract out services to external clients for a profit, for example, clients who are sponsored by funding agencies such as insurance companies and referred for specific treatment or assessment to these community programs, clients who are referred by representatives such as lawyers or the courts, or self referred clients. . participants at the study sites . . soliciting participation in the study. in selecting multiple sites for inclusion in a study, within case issues need to be examined, “within-case sampling is almost always nested…” (miles and huberman, , p. ). within case sampling is iterative, where “we observe, talk to people, and pick up artifacts and documents….at each step along the evidence trail, we are making sampling decisions to clarify the main patterns, see contrasts, identify exceptions or discrepant instances, and uncover negative instances-where the pattern does not hold. our analytic conclusions depend deeply on the within-case sampling choices we made” (p. ). for this study, in order to maximize variation of insights, participants were selected that would be most likely to contribute diverse perspectives. key personnel were first identified within the sites, including: ( ) those whose jobs included activities that may in some way involve program evaluation, and ( ) those who were program administrators, and ( ) those who were practitioners providing direct client disability management services. potential participants at each site were initially contacted by email or in person, with informed consent forms describing the study provided (see appendix a). those originally contacted by email were subsequently contacted in a follow up telephone call. the first three contacts were with individuals at sites representative of biomedical, labour and biopsychosocial paradigms of disability management. each person contacted agreed to participate in this research study, and expressed an interest in contributing to an understanding of evaluation within disability management. five different insurance paradigm programs were contacted before one agreed to participate. i was familiar with the fifth site i contacted and the response from the person initially contacted was positive. through a snowball sampling procedure initial contacts at the sites recommended other individuals as potential participants in the study. the initial person contacted at the biomedical site, bm of this study, recommended inclusion of a colleague at the biomedical site, who became bm . the initial person contacted at the labour site, l of this study, recommended inclusion of two colleagues from the labour site, who became l and l . the initial person contacted at the biopsychosocial site, bpsy of this study, would not recommend other current employees of the site, so i then contacted a colleague who had been a former employee at the biopsychosocial site who agreed to participate, and became bpsy . at the insurance site the initial participant i recommended inclusion of his colleague, i . i had professional relationships with one person from each of the sites prior to this study: bm , l , bpsy and i . all participants except bpsy participated in this study during hours of their paid employment with their employer’s permission. bpsy volunteered his personal time, and after completion of one long interview and a second shorter interview with him, without his prior knowledge i provided him a gratuity of $ . . . . participants at the biomedical site. the two participants from this site are both administrators/business owners as well as practitioners providing client services at the program. both are trained occupational therapists. these were the first and second interviews of the study, referred to as bm and bm . . . participants at the labour site. the three participants from the labour site are program coordinators and one is also the program manager. they were all formerly employed in other roles within the same organization as a vocational rehabilitation consultant, office staff/union activist and human resources manager (now manager of the labour site program). these were the third, fourth and fifth interviews of this study, referred to as l , l and l . . . participants at the biopsychosocial site. the two participants from this site included the current senior counsellor/team leader/administrator of the program and a counsellor who formerly worked for the program but was laid off several years ago due to loss of funding. both are vocational rehabilitation consultants by profession. these were the sixth and seventh interviews of the study, referred to as bpsy and bpsy . . . participants at the insurance site. the first participant from the insurance paradigm site is one of eighteen investigators of this program who conduct external investigations related to disability claims. the second participant from this site is the program manager who conducts internal investigations of staff of the organization. both hold a certified fraud examiner designation. these were interviews eight and nine, referred to as i and i . . methodology research is rooted within paradigms, epistemological and theoretical, that reflect the basic belief systems that guide researchers, including their choice of methodology. the researcher’s understanding of epistemology informs the theoretical perspective taken, and the methodology chosen to gain knowledge (guba & lincoln, ). my own social constructivist epistemology informs the methodological decisions for this research study. social constructivism claims there is no one objective external truth that exists to be discovered, and that meaning is made through our conscious engagement with our world (crotty, ). social constructivism “means that human beings do not find or discover knowledge so much as construct or make it. we invent concepts, models, and schemes to make sense of experience, and we continually test and modify these constructions in the light of new experience. furthermore, there is an inevitable historical and sociocultural dimension to this construction” (schwandt, , p. ). ‘knowledge’ is the result of how the ‘knower’ constructs reality from his or her experiences and perceptions (hanley-maxwell, al hano and skivington, ). this research is grounded in an interpretivist theoretical perspective, one that assumes that “reality is socially constructed, filled with multiple meanings and interpretations, and that emotions are involved. as a result, interpretivists see the goal of theorizing as providing an understanding of direct lived experience instead of abstract generalizations” (hurworth, , p. ). in the interpretive human sciences, the meaning of social action is inherent in that action, and the task of the researcher is to interpret, unearth, and understand that meaning (schwandt, ). this research study adopts a social constructionist epistemology, an interpretivist theoretical perspective, and uses grounded theory methodology to analyze data. this study assumes there are multiple different constructed realities of what is valued within the field of disability and return to work, and the potential for various approaches to evaluation. as with all grounded theory, the intent of this study is to develop a theory of evaluation practice in disability management. . . grounded theory methodology. the purpose of this research is to understand the nature and extent of evaluation that is occurring in disability management, about which little has been previously published. grounded theory allows the experiences and knowledge of information to be gained from participants assuming them to have expertise, providing an empirical basis for developing theoretical understandings of a phenomenon. this research was initially informed by an etic perspective based on research literature, for example what was recommended to be evaluated within disability management programs. as participants presented their emic first hand perspectives, insights are gained regarding the ways participants experience social phenomenon, the meanings they put on them, and how they interpret what they experience (richards and morse, ). programs exist within complex contexts, and research methodology should capture as much of that complexity as possible (corbin and strauss, ). this means obtaining multiple perspectives, and recognizing, “…that experience must be located within and can’t be divorced from the larger events in a social, political, cultural, racial, gender-related, informational, and technological framework and therefore these are essential aspects” (p. ) of successful exploratory research. grounded theory methodology is based on emerging analyses throughout data collection, and culminates in substantive theory regarding social phenomena (bryant and charmaz, ). the procedures of data collection and analysis employ techniques of induction, deduction, and verification (schwandt, ). analysis of data generates insights, and hypotheses are developed and tested through further data collection and analysis. grounded theory refers to both a method of inquiry and a product, enabling researchers to focus their data collection through successive levels of data analysis and conceptual development, toward production of theory (charmaz, ). there are several interpretations of what grounded theory methodology is. glaser and strauss developed grounded theory during the s as a systematic methodology of scientific inquiry, originally assuming positivistic and objectivist characteristics, but the methodology developed in different ways when the founders went their separate ways in the late s (bryant and charmaz, ). glaser’s position remained positivistic (charmaz, ) emphasizing the use of constant comparative methods to generate concepts, not to make descriptive generalizations (glazer, ). strauss, joining with corbin, maintained an assumption of an objective external reality, but moved grounded theory into post-positivist directions (charmaz, ), emphasizing complexities of the world in data collection, and maintaining multiple perspectives on events to build variation into the grounded theory analytic scheme (corbin and strauss, ; bryant and charmaz, ). subsequent to strauss’s death in , corbin’s perspective was influenced not only by the methodological contributions of strauss, but also contemporary feminist, constructionist and postmodern perspectives. she denounced a post-positivist underpinning, emphasizing that individuals give meaning to events in light of their own experiences (corbin and strauss, ). at the same time charmaz ( ) was also developing a constructivist informed grounded theory that stressed analytic strategies rather than data collection methods, where multiple sources of data are selected based on conceptual sampling to fill gaps in the literature. . . grounded theory methodology for this study. grounded theory methodology includes the following: (a) simultaneous collection and analysis of data, (b) a two-step data coding process, (c) comparative methods, (d) memo writing aimed at the construction of conceptual analyses, (e) sampling to refine the researcher’s emerging theoretical ideas, and (f) integration of data into a theoretical framework” (charmaz, , p. ). the four sites were selected simultaneously to each conceptually represent a different paradigm of disability management: biomedical, labour, biopsychosocial and insurance. participants at each site were consecutively interviewed starting at the biomedical site, then at the labour site, followed by the biopsychosocial site, and finally at the insurance site. . . . simultaneous collection and analysis of data. from the start of data collection the researcher analyzes what things mean, noting “…regularities, patterns, explanations, possible configurations, causal flows and propositions” (miles & huberman, , p. ). meanings that emerge from the data are tested for validity, by comparing and contrasting findings among the cases, and with the literature. as meanings become increasingly explicit and grounded, they may become robust components of the theory. for this study, data analyses were simultaneous with data collection, including during document reviews, interviewing, discussions of the role with participants, during transcription that occurred as soon as possible after each interview, during open and conceptual coding of transcripts, creation of charts, figures and tables, reviews of figures by participants, and throughout comparisons of data from all sources and comparison of data to the literature. the data collection and analysis began with the biomedical site and iteratively added the other disability management paradigm sites. collection and analyses of multiple sources of data from the biomedical site were first conducted. collection and analyses of multiple sources of data from the labour site were then conducted, and data from the labour and biomedical sites were analyzed together. collection and analyses of multiple sources of data from the biopsychosocial site were conducted, and data from the biopsychosocial, labour and biomedical sites were analyzed together. finally collection and analyses of multiple sources of data from the insurance site were conducted, and data from all four sites were analyzed together. . . . two-step data coding. grounded theory data analysis involves a two step coding processes. open coding involves line by line coding of data, in the case of this study transcribed interviews, staying as open as possible to capture the multiple perspectives that may be assumed. this level of coding is close to and descriptive of the data. the second step is conceptual coding, which involves collapsing open codes into a smaller number of higher level codes, based on conceptual understanding gained through constant comparisons between different sources of data. the coding process is analytic and facilitates transcending the detail and striving for higher levels of abstraction in coding. grounded theory is not about accurate description, but is an analytic approach to develop conceptual abstraction (holton, ). it must theoretically explain not merely describe what is happening in a social setting. coding is therefore not a distinct stage as it is in some research methodologies, but a continuous, iterative process of collecting and analyzing data. “substantive coding is the process of conceptualizing the empirical substance of the area under study: the data in which the theory is grounded….the process proceeds from the initial open coding of data to the emergence of a core category….” (holton, , p. ). for this study the process of coding started with open coding of each interview transcript facilitated by the use of nvivo software. this involved reading each transcript line by line, identifying descriptive codes, and labelling those sections with code names. up to open codes were initially identified in all. some open codes overlapped and several sections of the transcripts fit into more than one open code. a chart was developed to facilitate grouping open codes into themes to develop an initial descriptive display of results. interview transcripts and documents were then re-coded to identify conceptual themes that emerged from the initial open coding of the data. this included re-coding of data from each site and across all sites in an iterative manner, including identification of which cases illustrated which themes. conceptual analyses involved returning to data from sites previously coded to analyze concepts among sites in an iterative manner. data were collected first at the biomedical site, then the labour site, followed by the biopsychosocial and finally at the insurance site, however, analyses involved a process of returning to the data from all sites to understand concepts. when new conceptual codes were identified, analysis included returning to previously coded data to investigate possible evidence that may have been overlooked or possible coding that may need to be collapsed in ways relating to new meanings that were developing. . . . constant comparative methods. the constant comparative method is, “…a method of analysis that generates successively more abstract concepts and theories through inductive processes” (bryant and charmaz, , p. ). open codes are compared to open codes, conceptual codes are compared to conceptual codes, open codes are compared to conceptual codes, themes are developed and are compared to other themes. these comparisons constitute stages of analysis through which conceptual understandings and theory develop. as the researcher codes all sources of data a core category begins to emerge. “this core variable can be any kind of theoretical code: a process, a typology, a continuum, a range, dimension, conditions, consequences, and so forth” (p. ). for this study interview transcripts and documents were coded conceptually, the literature was consulted for theoretical evidence to integrate with development of the conceptual findings. outlines were developed describing conceptual findings within cases and across cases. through analyses of raw data, open codes, conceptual codes, and returning to the literature, themes were developed and tested, and core categories emerged that analyzed together explained the processes of disability management evaluation practices in context. . . . memo writing and visual displays. memo writing is a strategy to focus the researcher’s thinking throughout the data analysis: “it is not the form of memos that is important, but the actual doing of them”(corbin and strauss, , p. ). writing memos begins with the first analysis and continues throughout, beginning, “as rather rudimentary representations of thought and growing in complexity, density, clarity, and accuracy as the research progresses” (p. ). an example of two memos is displayed in figure . analyses involve complex cumulative thinking and memos are used to keep track of this thinking. memos are conceptual not just descriptive and “provide a storehouse of analytic ideas that can be sorted, ordered and reordered, and retrieved according to the evolving analytic scheme” (p. ). memos facilitate judgments about when a category is saturated, and properties and dimensions are well developed. figure examples of memos visual displays of data were also developed during analyses. i began with a large wall mounted chart on which open codes were grouped into themed categories to organize and display descriptive codes. four individual figures illustrating communications, information flow and evaluation at each of the four sites were developed and refined. these figures were presented to one participant from each of the respective sites to obtain feedback, which was used to modify the figures thus increasing _________________________________________________________________ memo degrees of learning related to levels of abstraction and sharing information in evaluation. synthesis of issues into categories of evaluation served as a conceptual organizer, but other categories also would fit. constructivist learning developed at higher levels of abstraction and information sharing, where there were opportunities to access diverse perspectives, multiple sources of information, responsiveness, accountability and democracy. an implication is that to accomplish disability management successfully as it occurs within complex contexts, with power discrepancies and lack of awareness of critical issues, developmental and formative evaluation that attends to diversity, responsiveness, democracy, and cultural competence, can facilitate the necessary social learning, awareness and change. memo biomedical – organizational learning at program level, politics negative impact on evaluation. labour – evaluative inquiry, organizational learning at program level, politics balanced for program evaluation, motivation, team dynamics, organizational processes, collaboration and communication. biopsychosocial – organizational learning, evaluative inquiry, politics impact funding, motivation, team dynamics, organizational processes, collaboration and communication. insurance – political influences vary, intelligence versus experience discrepancies. __________________________________________________________________ their accuracy and validity as descriptions for each site. as categories of conceptual codes were synthesized into themes, one conceptual framework was visually illustrated showing how all the core concepts, categories and themes interrelated. this visual display was analyzed and modified enabling hypotheses to be tested during formulation of the best explanation of disability management evaluation. . . . theoretical sampling. theoretical sampling refers to gathering data based on concepts, “rather than being used to verify or test hypotheses about concepts, theoretical sampling is about discovering relevant concepts and their properties and dimensions” (corbin and strauss, , p. ). theoretical sampling helps to: define the properties of categories and the contexts in which they are relevant; to specify the conditions under which they arise, are maintained and vary; and discover their consequences (charmaz, ). theoretical sampling begins with concepts from the research literature, and then is responsive to the data as it is collected. the researcher is guided by an initial understanding of the phenomenon in selecting the first sample, which is based on understanding from reviews of the literature. data are collected and analyzed from the first sample, “…concepts are derived from data during analysis, and questions about those concepts drive the next round of data collection” (corbin and strauss, , p. ). the researcher’s increasing understanding of categories within the data and of developing theory with each sampling, direct subsequent sampling (bryant and charmaz, ). information from each successive sample is compared to information from the previous samples and to information from the literature. data saturation occurs when meaningful themes emerge, about which the researcher has been able to develop a depth of conceptual understanding, or when substantive theory has been formed. for this study, theoretical sampling involved selection of a sample of four disability management program sites, each representative of a different disability management paradigm: biomedical, labour, biopsychosocial or insurance. selecting sites based solely on a literature review of the disability management literature is one approach described by charmaz ( ). this approach differs from the grounded theory method attributed to glazer, who selected sites in response to the data analysis toward saturation of concepts that are being developed. . . . theoretical integration. a theoretical explanation can result in confirmation of information in the literature; identification of new information or meanings not in the literature; or, identification of information from the literature that is not found in the data collection (miles and huberman, ). this can include re- synthesizing old information in new ways. a definition of a theory according to the canadian oxford dictionary theory is, “a supposition or system of ideas explaining something, esp. one based on general principles independent of the particular things to be explained.” (barber, , p. ). “a more formal understanding common in the natural and social sciences is that theory is a unified, systematic causal explanation of a diverse range of social phenomena. theory of this kind is evaluated in terms of the familiar criteria of parsimony, completeness, predictive power, and scope” (schwandt, , p. ). theory understood this way is the proper goal of social sciences (schwandt, ). empirical and theoretical structures build upon one another, so current studies extend earlier work, referred to as theoretical cumulativeness (kline, ). in many cases theories are neither corroborated nor refuted, and no cumulative knowledge is built, often in soft areas where empirical research is difficult, or on hot topics where interest just fades away. for topics where there has been little or no prior research documentation in the literature, no scientific breakthroughs and no theories to build upon, exploratory research methods can be used to form initial conceptual understandings and from that to build theory. while theories give oversight of a topic, they differ from hypotheses. hypotheses may be deduced from a theory, and focus on smaller aspects of the topic that are amenable to empirical investigation (meltzoff, ). for example, hypotheses that are testable and deduced from a theory may explore possible rival explanations, explore negative cases, or attempt to replicate a finding. schwandt ( ) suggested there are different levels of theoretical sophistication, organization and comprehensiveness. at the simplest level are theoretical ideas, concepts that function as analytic tools, pointing the inquirer in a general direction without specifying what is expected to be discovered. at a level up are theoretical orientations or perspectives, social theories that serve as approaches to explain social reality, for example, “functionalism, symbolic interactionism, behaviourism, phenomenology, hermeneutics, feminism, social constructionism, and poststructuralism)” (p. ). crotty ( ) explained that in clarifying his/her theoretical orientation, a researcher elaborates on the assumptions being made, explaining the context for the process and grounding its logic. schwandt ( ) suggested at a still higher level are substantive theories that differ from these theoretical frameworks because they are about a specific or behavioural phenomenon (e.g., a social constructionist theory of a particular cancer). substantive theories can develop into formal theories that are generalized or extended to cases other than the one studied. exploratory research methods applied to build theory in areas where no former theory has been developed can start with building a conceptual framework, “explaining, either graphically or in a narrative form, the main things to be studied – the key factors, constructs or variables – and the presumed relationships among them” (miles and huberman, , p. ). grounded theory involves inductive processes of analysis, from data to concepts to explanation, where abstract concepts are developed and the relationships between them are specified (bryant and charmaz, ). theoretical concepts “result from iterative processes of going back and forth between progressively more focused data and successively more abstract categorizations of them” (p. ). the most significant categories are increasingly analyzed and raised to concepts in the emerging theory. theoretical saturation in grounded theory is “the point in the analysis when all categories are well developed in terms of properties, dimensions, and variations. further data gathering and analysis add little new to the conceptualization, though variations can always be discovered” (corbin and strauss, , p. ). corbin and strauss ( ) summarized canons and procedures for grounded theory. data collection and analyses are interrelated processes starting with the first bit of data collection. analysis addresses all seemingly important issues that are then incorporated into the next collection of data and observations. concepts are the basic units of analyses and “each concept earns its way into the theory by repeatedly being present in interviews, documents, and observations in one form or another – or by being significantly absent” (p. ). consistency is achieved by seeking indicators of concepts in all subsequent data collection and analyses. concepts are then categorized, where categories are at a higher level in the explanation of the phenomenon studied. grounded theory uses constant comparisons among data, concepts and categories during analyses. patterns and variations are identified, and processes are specified, such as “breaking a phenomenon down into stages, phases, or steps” (p. ). writing memos is integral to developing a grounded theory to elaborate ideas during analyses and integrate details. hypotheses about relationships among categories are developed and tested, to revise and build the explanation of the phenomenon. conditions that seem to immediately impact the phenomenon are analyzed, and broader contextual conditions such as “economic conditions, cultural values, political trends, social movements” (p. ) are also brought into the analysis and integrated into the theory where relevant by showing specific linkages. corbin and strauss ( ) suggested that four areas should be addressed in judging a grounded theory (and cautioned against positivistic connotations): . validity, reliability and credibility; . plausibility and value; . adequacy of the research process; and, . empirical grounding of the research findings. grounded theory is designed “to develop a well integrated set of concepts that provide a thorough theoretical explanation of social phenomena under study. a grounded theory should explain as well as describe. it may also implicitly give some degree of predictability, but only with regard to specific conditions” (p. ). . data collection methods data collection methods at each site included semi-structured interviews, review of documents, and completion the readiness for organizational learning from evaluation inventory (role), which assesses perceptions of learning within an organization. . . scheduling interviews and completion of the role. following ethical guidelines, potential participants were initially contacted in person or by email (not by telephone). initial contact included providing each potential participant with copies of ( ) the informed consent form, and ( ) the role inventory, for their consideration. participants who agreed to participate were scheduled to participate in an interview with me. interviews were scheduled to take place within the week following my initial contact with them, and their agreement to participate. dates of interviews are listed in table . participants all chose to participate in their interviews with me at their worksites, where i met with them. participants were asked to complete the role inventory prior to their interview, and to submit their completed role to me at the beginning of their interview, which each person did. i obtained signed consent forms and completed role inventories from each participant at the interview. table dates of participants’ interviews participant date of interview bm march , bm march , l june , l july , l july , bpsy july , bpsy december i may , i may , . . semi-structured interviews. semi-structured interviews were guided by several pre-planned questions, which are included in table . the interviews started with clarification of the interviewee’s past evaluation experience and the role of the participant within the disability management program he/she was attached to. open ended questions probed the interviewee’s understanding of disability management evaluation practices and organizational learning. participants were asked to describe their experiences guided by the interviewer to maintain focus on evaluation. each participant was interviewed for - minutes. this interview protocol was pilot tested in june to: (a) practice interviewing that successfully maintained a focus on disability management evaluation, (b) practice interviewing that led to substantial information reporting on disability management evaluation practices, (c) test pre-written questions to determine how useful they were to meet the objectives of the interview, and so that new questions could be composed that would be considered more likely to have the potential for improved data collection, (d) practice recording an interview to ensure the equipment worked properly, and (e) investigate what types of unexpected information regarding disability management evaluation may be forthcoming during interviews. based on the pilot interview the questions were revised to be more focused on the research questions and to increase the likelihood of eliciting information from the personal experiences of the participants. the microcassette recorder malfunctioned during the pilot interview, and parts of the interview were muted, therefore new equipment was obtained before the actual study, and tested to ensure the equipment was in sound working condition. table grounded theory semi-structured interview questions what is your background or experience with program evaluation in general? what has been your experience with the disability management program we will discuss? how do you know that your program is doing what it is intended to do? how is your program evaluated? who is responsible for evaluation of the program? what do you think is most important to be evaluated in disability management programs in general? based on responses to the role, how do you think the characteristics of your organization strengthen receptivity to learning? how do you think characteristics of your organization need to change to be receptive to learning? how would learning relate to the disability management program? in the pilot interview the interviewee provided significant insights into psychosocial interpretations of disability management outcomes. for example, the interviewee provided a graph he had composed and described how the graph depicted longitudinal psychological adaptation to disability. also, the interviewee looked beyond simple return to work outcome statistics in his interactions with two different employer sites that provided similar services in the same industry, and explored underlying psychosocial issues that he concluded had resulted in return to work outcomes that were uncharacteristic of each of those two employers. these examples suggested this data collection strategy had the potential to lead to rich information describing interacting variables that exist within complex organizational contexts, taking into consideration multiple stakeholder perspectives. . . documents analyzed. table illustrates who at each site provided documents, or whether i as researcher obtained them, and which documents were acquired. all documents were reviewed in depth, with a primary objective of analyzing any information related to evaluation. document review and analysis initially involved identifying which documents included information related to evaluation and which did not. documents that focused on evaluation were: client satisfaction surveys (from the bm, labour and insurance sites), key performance indicator (from the bm site), the manager joint return to work program survey (from the labour site), and the handwritten summary of bm ’s criteria for success. other documents did not reveal any information on evaluation at the sites. participants were asked for any documents related to evaluation of their program, and none other than those noted were provided. documents pertaining to the programs were open and conceptually coded (at the time that interview transcripts were coded so that lists of codes included codes from documents and interviews). analyses of documents included triangulation of documents to documents from the same site, documents to interviews from the same site, and documents in relation to all sources of data together. . . the role inventory. the readiness for organizational learning and evaluation instrument (role) assesses the perceptions of personnel about their work environment in relation to learning from evaluation, leadership, structures, table documents obtained on the programs site participant provided or researcher accessed documents bm bm  handwritten summary of bm ’s criteria for success  client satisfaction survey  key performance indicator researcher  organization’s web page labour l  client satisfaction survey  manager joint return to work program survey  physician functional abilities evaluation l  return to work program manual researcher  hard copy of a power point presentation describing the program  brochure describing the program  program coordinator job description  organization’s annual reports for prior years  organization’s mission statement bpsy bpsy  email outlining the data base categories bpsy was establishing researcher  program counsellor job description  organization’s web page  brochure describing the program insurance researcher  client satisfaction survey  program investigator job description  magazine published by the organization  organization’s annual reports for prior years  organization’s mission statement note: i asked each participant for any documents related to evaluation, and formal evaluation reports were not available from any of the sites. communication and culture (preskill and torres, ). (see appendix for the role inventory.) the role was developed because “an organization must have certain elements of its infrastructure in place if it is to truly support and encourage organizational learning” (preskill and torres, , p. ). the role items reflect those organizational elements shown to significantly influence the extent to which evaluation supports learning and decision making. the role is comprised of items, grouped into six major dimensions: culture, leadership, systems and structures, communication, teams, and evaluation. there are not right or wrong answers, and responses are on likert scales from (strongly disagree) to (strongly agree). the role is scored by calculating the mean of responses for each of the dimensions of the survey. the authors recommended when the role is administered within one site, organization or department, that scores be aggregated and reported in summary form, however in this study individual participant scores were analyzed separately. results can be used for discussion or feedback with an organization. an example of interpretation of a role score might be, “if a department or organization were to score low in one or more of the dimensions, this would indicate that learning from evaluation might not be supported or allowed to succeed. likewise, it would indicate that the department or organization isn’t prepared to engage in other kinds of organizational learning practices. these kinds of results can help the organization determine where to focus its improvement efforts if its goal is to become a learning organization.” (preskill & torres, , p. ). . . . uses of the role in this study. in this study the role was not used in the typical way intended by the authors. the role was sent to all nine study participants prior to their semi-structured interviews and returned completed during each interview with signed consent forms. the role was used initially to stimulate discussion on organizational learning and evaluation during the interviews. content from the role was discussed during each interview to stimulate participants’ thinking regarding organizational learning and evaluation, and to elicit participants’ perceptions regarding strengths and weaknesses within their organizations’ or programs’ infrastructures, in relation to learning and evaluation. the role was selected for use in this study as the preferred method to gather information on participants’ perceptions of learning and evaluation within their organizations. administration of the role guaranteed each participant would have an opportunity to contribute rigorous data on the subject by having the time to focus on each role question and to complete the entire inventory. the role was preferable to questioning participants on these issues during the semi-structured interviews, as during interviews there was a possibility of inconsistent or limited focus on the topics that were covered in the role. this was especially true because the interviews were semi- structured with open ended questions as part of the grounded theory method, and there was no guarantee topics covered in the role would be discussed in the interviews. a third benefit of using the role rather than asking questions during the semi- structured interviews was that development of the role had been based on research into organizational learning and evaluation processes and practices. the role items were developed based on the understanding that an organization must have certain elements of its infrastructure in place if it is to truly support and encourage organizational learning. the likert scale role items that were created, according to statistical confirmation of high coefficient alphas, represented those elements considered necessary. additionally, using the role enabled a third data source, and triangulation among three different data sources. after completed role inventories were scored, scores among participants from each site were compared and contrasted; scores among all nine participants were analyzed together; and, role scores were triangulated with other data sources including the interviews and documents. role results were referred to during documentation on their own merit, and in support of explanations and hypotheses being made based on other data sources. . . triangulation of multiple data sources. triangulation across different data sources or multiple researchers is perceived as a means for validation of evidence, error reduction, and dismissal of rival explanations (mathison, ). triangulation among multiple sources of evidence should address consistencies, inconsistencies and contradictions, contributing opportunities for the researcher to construct plausible explanations, rather than using triangulation as it sometimes is for validation alone (mathison, ). administration of the role was not part of the grounded theory data collection, however as noted by bringer, johnston and brackenridge ( ), glazer and strauss had pointed out in , “grounded theory does not, however, preclude the use of quantitative data such as survey data that can be used at the later stages of a project to support or further explore the initial analyses.” (p. ). the role was an ideal source of data to be integrated with the other sources: interviews and document analyses, to answering the research questions of this study. in particular, the role contributed to exploration of evaluation practices and learning at the sites, and to analysis of how evaluation varied depending upon whether the organization was a learning organization. the role provided detailed information on the participants’ perspectives of the degree to which their organizations or programs were receptive to and appreciative of learning and learning from evaluation. the three sources of data triangulated together contributed to identification of patterns, political perceptions, social interactions, power discrepancies, stakeholder values, evaluation purposes and procedures, and overall to conceptual and contextualized understandings. . issues of validity and reliability methods for enhancing validity and reliability in exploratory research discussed by appleton ( ) have been followed in the collection and analysis of data in this study. purposive sampling was used. a pilot interview was conducted to develop research interview skills and test the interview questions. audiotaping and transcribing interviews verbatim fostered the accuracy of data analysis. my views from prior professional involvement in disability management were explored and scrutinized, to understand and minimize any potential for biases during data collection and analysis. during data analysis i referred back to interview, document and role data while developing themes, to confirm accuracy, challenge assumptions, and consider alternate explanations. models illustrating disability management evaluation and communications were developed and reviewed by participants to verify accuracy. . reflexivity researchers do not divorce their research from who they are and therefore, need to be self-reflective (corbin and strauss, ). researcher journals are one strategy for documenting reflections, which then can be used as one source of data in the analysis. reflective writing refers to, “critical self-reflection on one’s biases, theoretical predispositions, preferences, and so forth” (schwandt, , p. ), and is important for establishing validity. my analysis during this study has been influenced in a number of ways by my experience. first, i have practiced vocational rehabilitation for twenty five years, which has involved interacting with a multitude of disability management programs and different stakeholder groups (workers, employers, unions, treatment and assessment facilities, funding agencies, medical practitioners, schools, etc.). also i have experienced in my work how some program functions and stakeholder behaviors represent different paradigms of disability management described in the literature (biomedical, labour, biopsychosocial, insurance, etc.). third, i have experienced how stakeholders who are willing to communicate and be receptive to each other’s perspectives can catalyze learning and bring about growth. i have also observed how, in contrast, those who steadfastly hang on to their perspective or withdraw into cynicism are less likely to contribute in ways that facilitate learning, can contribute to stagnation of team work, and can increase the possibility of reaching invalid conclusions with short and long term consequences. i have seen that depending on the composition of case management team participants, potential results for the same case can be entirely different. and finally, over the past several years i have worked within a group of vocational rehabilitation professionals several of whom have been accessing a disability management program like the labour paradigm site in this present study. prior to this study i had never discussed this disability management program with anyone and had very little familiarity with its operations. . summary this grounded theory study involved theoretical sampling of sites representative of four paradigms of disability management: biomedical, labour, biopsychosocial and insurance. this research considered how evaluation practices at the sites may reflect what is important to the respective disability management paradigms. a total of participants, including administrators and practitioners, were involved, or from each site. data collection methods included: semi-structured interviews, review of documents and administration of the role instrument. chapter : results in this chapter the evaluation of disability management programs at four sites representing primary paradigms in the field are described. data analyzed are interviews with nine participants, documents, and the results from the readiness for organizational learning from evaluation inventory (role) from the four sites. the contextual framework for each program is described and evaluation practices at the sites are discussed by ) values and goals of evaluation, ) stakeholder involvement, ) evaluation data collected, and ) the use and reporting of evaluation data. these features of evaluation are summarized in a diagram and discussed in relation to the study’s four research questions. the role results are analyzed and triangulated with interview data to characterize each organization’s readiness to learn. a cross case analysis is presented in chapter , as the basis for the grounded theory of evaluation of disability management programs. disability management program evaluation by sites . biomedical paradigm site . . context and framework of this program. the biomedical site was a small business owned and operated by two occupational therapists (referred to as bm and bm in this study). services included functional capacity evaluations, job demands analyses, and development and monitoring of return to work plans. this site primarily received referrals from two large public nonprofit disability insurance companies in british columbia that oversaw compensation for injury or illness sustained at work or in motor vehicle accidents. bm received approximately the same number of referrals from the two, and bm received virtually all referrals from one of the organizations, making this organization the main referral source of the biomedical site. other referrals came from different insurance organizations, employers, unions, lawyers and client self referral. the referring agencies administered treatment plans based on medical and functional capacity evidence. assessment information provided by the biomedical site was one source of that evidence. bm clarified the services they provided, i evaluate, i recommend solutions, i may actually implement a solution and assess its effectiveness and hopefully dissolve the situation in terms of returning the person successfully to a job. but primarily i am a supplier of information. toward this end, the program staff highly valued accurate information and useful reports. figure illustrates evaluation at the bm site as described to me by the bm participants of this study. in developing this diagram i forwarded a first draft to bm and requested feedback, and recommended modifications were incorporated. the main referring agency providing the bm site with % of its referrals was a large organization that managed disability claims related to injuries or illnesses. this agency established a network of providers that it contracted with for limited periods of up to several years to provide the various biomedical services they require (functional assessments, job demands analyses, graduated return to work plans, etc.). the bm site had been one of the providers in that network since its inception over fifteen years prior. contract lengths were uncertain lasting from year to year for each individual service. the bidding process could open with little warning, and an updated network of providers would be selected from among the applicants. there were no guarantees of contract renewals, leaving providers such as the bm site in somewhat of a precarious situation given the proportion of their incoming referrals that came from that one source. figure communication among program stakeholders as described by the biomedical participants communications with large referring agencies were unidirectional, with little opportunity for the bm site to decide what information was shared. there were no iterative processes of communication between the bm site and the referring agencies, and no opportunities for dialogue or for the bm site to solicit feedback from individuals at the dm program funding referral agencies self referred clients clients clients’ employers clients’ physicians s note: s = summative evaluation referring agencies. there were no collaborative communications on individual cases among the bm site, the referral agency and the client. bm explained, there is a difficulty in contacting a referral source directly. most of the time they do not like speaking directly with the provider. there are actually no communications going on any more. it’s all through fax and reports. rarely will i get an actual call saying you did a great job or i have questions. nothing. it has become a very distant relationship...so in that case i do not feel comfortable the way it is right now in actually picking up the phone, calling the referral source and saying, ‘hey how did you like my service?’ because [they are] already supposed to measure that. i’m not supposed to go and ask for that information. there were also no communications with the main referring agency regarding the outcomes of services provided, we pretty much never see them again. or it’s rare that we see them again down the road. you know, how impactful was the evaluation, or how the evaluation results effected what direction the case manager or the voc rehab went in, we don’t usually find out that information (bm ). . . evaluation practices within the biomedical site. . . . value of evaluation. given most of their referrals came from one referring agency, the biomedical site staff were acutely aware of how important evaluative feedback from this organization was, to understand whether their services were valued and whether continued referrals would be likely. the staff would have liked descriptive feedback on the quality of their reports and on the value of their assessments and job site interventions. however, the staff reported this was not available, so they made inferences based on the only information available: that repeat referrals from the same referring agency indicated their services were valued. the staff would have preferred an open dialogue and iterative processes with all parties on each individual case, with opportunities for everyone to share information and learn, but they rarely had an opportunity to discuss cases with the referral agency prior to, during or after completion of their services. bm characterized communications between the parties as so unreliable that they often received medical background documentation, which was intended to prepare them for a given referral, after they had completed their services and submitted their final report. additionally, due to many short term services they provided, the bm site staff was often working with new clients and their employers over brief periods of only several hours to a couple days, leaving little time to develop meaningful dialogue. the exception to this was when they would oversee return to work plans that continued several weeks to months, during which time they were able to monitor events and could recommend and incorporate changes to their interventions based on new information acquired. instead of relying on evaluative feedback from referring agencies, program staff supported each other, collaborating on cases and sharing information where relevant to support each other’s success. both valued feedback and ongoing learning, as bm explained regarding the importance of evaluation, you should have ways to know that what you do is effective and also to improve your ability where you are learning or your effectiveness on an ongoing basis…. or even questioning myself as to what would i judge to be effectiveness. . . . goals of evaluation. services provided by the bm site mainly involved data on how each client’s physical impairment had impacted functioning, and ergonomic return to work assistance. bm reported that most services involved a physical assessment, which was based on a functional capacity assessment at the site’s clinic or at a job site. the bm site received summative evaluative feedback from the main referring agency that emphasized timeliness in their provision of services. the bm site attempted to minimize the time taken to provide services, but did not believe timeliness was the most important factor to evaluate, “… quality is first, timeliness is second. but you can have a very good report and if it’s late it will be useless” (bm ). the bm site staff would have preferred evaluative feedback on a case by case basis, working collaboratively with others, so they could learn how their services and reports were impacting the clients or others (referring agency, employer, union, health service providers) and to incorporate improvements in handling similar cases. . . . stakeholder involvement. stakeholders of the bm site included clients, referring agencies, employers, and clients’ health professionals, lawyers, union reps, and co-workers. the bm site was the only site of the four participating in this study that was primarily externally evaluated. summative external evaluation of bm site services was conducted by the main referral agency, which specified that the bm site use two strategies for evaluation: a key performance indicator that generated four statistical measures as feedback on services, and a client satisfaction survey that gathered clients’ opinions of the program. the referring agency summarized detailed information from the client satisfaction survey into a single numerical rating. an average of the single rating across all client surveys was provided as feedback to the bm site, and the bm site staff did not have access to the disaggregated data from the client satisfaction surveys. bm found the single numerical feedback superficial and potentially less meaningful than descriptive feedback that could have been communicated. how the evaluation was conducted was one source of dissonance between the program and the referring agency. the staff sought formative evaluative feedback regarding their services from other sources. they had employers and workers review job demands analysis reports to ensure accuracy (bm advised that employers and workers often had “different views about what the job requires.” so feedback from both sources was sought). they had clients and their employers, physicians, and referring agencies review graduated return to work plans to confirm feasibility. both bm and bm conducted ongoing work site visits when overseeing return to work plans to elicit feedback from the perspectives of multiple stakeholders at the job site (employer, union, workers) and then incorporated new information and modified plans where needed. bm and bm held debriefing sessions with clients at the end of their services, so they could make improvements where appropriate. all services at the bm site included at least one final report, and some also included interim reports. bm and bm compared their reports to those of other providers when available to incorporate better reporting strategies. . . . evaluation data collected. on the key performance indicator, four criteria were rated on a scale of to : ( ) time from referral to first client contact, ( ) report turnaround time, ( ) client satisfaction, and ( ) percentage of client surveys completed and returned. the main referring agency compiled scores on the key performance indicator criteria for all agencies in their network (including the bm site) so that scores of all the provider agencies could be compared to each other. (at the time of this study there were fifteen provider agencies from across british columbia listed on the key performance indicator.) the referring agency provided all provider agencies the target scores (standards) to aim for on each criterion of the key performance indicator. a summary of comparisons of scores for all the provider agencies was distributed quarterly as feedback to all agencies in the network of providers. completion of the client satisfaction survey was required by the main referring agency, having replaced the bm site’s own client satisfaction survey, and was administered on behalf of the referring agency by the bm site staff at the completion of services. the completed satisfaction surveys were submitted directly to the referring agency, where results were summarized. the survey included: four statements with likert scales from to pertaining to satisfaction with the service, one yes/no question, and two open ended questions on strengths/weaknesses of the service. results from the client satisfaction survey were summarized into a single rating from - . this numerical rating was then averaged across all clients for the bm site, and this mean score was the indicator of client satisfaction, one of the four criteria on the key performance indicator. bm advised “report turnaround time” was important to the main referring agency. the referral agency provided no feedback on the quality of work being done (services or reports) or on outcomes (such as return to work) which would have been the more significant criteria for evaluation in the opinions of bm and bm . …report turnaround time is a huge thing for [the referring agency]. when in the end it doesn’t really reflect on the quality of what you think or the effectiveness of your service. but that’s to tell you how [they] see you as a supplier of information and they want that information now. (bm ) accuracy was important to the bm site. they had employers and workers read job demands analyses reports to ensure accuracy. they had workers, employers, clients’ physicians and referring agencies review return to work plans to judge feasibility and sought ongoing formative evaluations from workers, employers and unions at the job sites to make improvements while monitoring return to work plans. . . . use and reporting of evaluation data. two of four criteria on the key performance indicator focused on timeliness: time from referral to first client contact and report turnaround time. because the referring agency valued timeliness, the biomedical site attempted to complete these services in the minimum time necessary. the bm site administered the required client satisfaction survey and completed surveys were submitted directly back to the referring agency for analysis. the other criteria on the key performance indicator were client satisfaction (as measured by the result of the client satisfaction survey) and the percentage of client satisfaction surveys returned. as the bm site did not find this information very useful, bm conducted exit interviews with clients. she described her “criteria for success” as “debrief a client at the end of a service, to know how they felt about the whole situation, explaining what now, what i will do, and to give me some information on whether i have done a good job or not.” feedback from these exit interviews provided information more in line with the bm site’s former client satisfaction survey that had elicited clients’ views. it was for the worker to assess our service. in terms of whether they had been treated in a respectful manner, whether they had learned something during the evaluation that i provided, or through the service that i provided. regardless of the attention given to satisfaction of the client, bm considered satisfaction of the referral agency to be a more significant indicator in the evaluation of services. it’s not the satisfaction of the injured worker. let’s put it that way. it’s important all right, but it’s not the most important….because my service was requested by an entity … that’s the entity that should judge the effectiveness of my service. bm said their site had tried unsuccessfully to obtain feedback from the specific person within the referral agency and was told “i’m not supposed to go and ask for that information….we had also started sending a satisfaction survey to the referral source, and we were told to stop that.” based on the key performance indicators, the bm site had not initially met the required target on the criterion: client response rate. this led to clarification that the rating was based on the percentage of client questionnaires returned. subsequently the bm site staff ensured every client was administered a satisfaction questionnaire, and the following quarter their score on this criterion of the key performance indicator rose from % to %. the bm site minimized any negative impact on client satisfaction survey scores that could be caused by misunderstandings the clients may have had during their involvement in services. bm explained how this had been achieved by screening completed surveys prior to submitting them, sometimes i will actually ask the client not to seal the envelope. i want to read it. so once in a while i will pull one out and i am not supposed to do that. i am supposed to send them, and i am not. i just want to read what they said, because there is a comment section that some people were quite extensive on [saying for example] i don’t like the fact that this is happening. bm then decided negative comments could be minimized if she actually completed the survey with the client. well then i started doing the survey with the client by actually asking them the questions first to know if there were areas where they were not reading me very well on. in that case i felt that being there directly and listening to their response may not be the most objective measure. the staff felt they had little feedback on the usefulness of their reports, as referring individuals were nearly impossible to reach. on occasion bm and bm had access to the reports of other provider agencies when those reports had been disclosed as part of the background information that was forwarded to the bm site with each referral. whenever possible they compared the formats of their own reports to the reports of other agencies, and made improvements on their own where appropriate. bm clarified that she was interested in the formats of others’ reports, but did not want to be influenced by their opinions or findings, so she postponed reading the prior reports until after completing her own assessment. on occasion a client would complain to her about a prior assessment they had undergone, and in those cases bm would read that prior report. access to other providers’ reports allowed bm to critique methods others had used, and on occasion enabled discovery of new procedures that the bm site would research for potential incorporation into their own services. . . . summary of evaluation practices. table summarizes evaluation practices at the bm site in terms of three components, ( ) evaluation criteria, ( ) data sources, and ( ) use of findings. these components serve as a guide to understand what is to be evaluated and how, including, “…evaluation issues, questions, indicators of success (qualitative and quantitative), appropriate data sources and methods to be used to collect data” (cummings and paulmer, , p. ). data were not consistently available on indicators of success or standards, but this information is included when available. the biomedical site staff perceived weaknesses in evaluation in the absence of communications and dialogue with the referring agencies. these included errors and omissions, lack of meaningful information, misunderstanding of findings, and disregard for accuracy, all of which had the potential to influence decisions for individuals or organizations. the biomedical site staff wanted to collaborate with referring agencies to identify relevant criteria and accurate data collection strategies. . . evaluation practices and organizational learning. bm and bm emphasized that, “we do a lot of learning.” this includes taking formal training courses, attending conferences, collaborating among professionals, ongoing research (primarily using web-based sources) to maintain up to date knowledge in their field. asked during our interview whether there was anything within their organization that could be done so that they could benefit more from evaluation or that could enhance learning, bm advised, table evaluation activities at the biomedical site criteria data sources use of findings *time from referral to first client contact program staff reported dates to referral organization key performance indicator expedited client contacts to meet standards *report turnaround time referral organization data base key performance indicator expedited submitting of reports to meet standards *client satisfaction referral agency client satisfaction survey conducted exit interviews with clients to gain more detailed information *number of client satisfaction surveys completed and returned referral organization data base key performance indicator administered client satisfaction surveys to all clients and returned surveys client assessment of service exit interviews with clients modified interventions with clients quality of reports program staff analyses comparing their reports to the reports of other agencies modified subsequent reports accuracy of job demands analyses employers’ and workers’ reviews of reports corrected reports quality of measuring equipment participant research of current publications upgraded equipment note: * = denotes the four categories listed on the key performance indicator. it is always good to do this sort of review. i am an ongoing learner….i am a seeker. i review literature. i google my own field. i check for new tools. i check for how things are done. i check on studies on the validity and reliability of the tools that i use. i take certification whenever i can. i try to keep up with that….i am constantly changing. i am not doing the same things that i was doing last year. throughout their work staff collaborated as much as possible. bm explained, we are always chatting about how this can be done differently, or i have this problem has it happened to you before? how did you deal with it? what is going to work for that situation? that happens all the time….any type of problem or question i’ll ask and we will come up with how we did this before….she’ll say oh yea you know i worked with this person and we made this type of splint, or we got this type of keyboard or mouse and that made a difference. referring to collaboration bm explained, it is important…because often we provide the same service, that we are seen as consistent. we work under the same roof. [we have] to produce something that looks very similar….so often we will talk about how we would see a certain situation. what we would do. we are always right next to one another. so of course there is an ongoing consultation between the two of us. we always share. bm and bm adapted to the main referring agency’s evaluation design that limited them to the key performance indicators, but neither found it included what they most valued. the perceived weaknesses of evaluative judgments from the main referring agency and the consequent difficulty in trying to ensure services were improved to meet the needs of the referring agency resulted in an unexpected and sudden loss of a contract. the main referring agency opened competitions to update their network of providers and the bm site applied to renew their contracts on all services, most of which they had provided since the onset of the network in . the bm site, and in particular bm who received nearly all referrals from the main referring agency, lost the contract to provide one of their main services, overseeing return to work programs. the program was advised that insufficient detail of what their service would entail was provided in the application. this decision was made without dialogue between the referring organization and the bm site staff, in spite of the fact the site had been providing this same service to this referring agency for nearly two decades without complaint. the referring agency’s publication comparing scores of all providers in the network on the key performance indicators compelled the staff to modify their strategies for reporting timeliness to increase the percentage of client satisfaction surveys returned. these changes were made to improve their ranking in future comparisons with other providers’ scores. . . . summary of role scores at the bm site. overall role response patterns for the two bm participants indicate they valued feedback and learning from evaluation within the bm program. their goal was to use evaluative feedback to make improvements to their services and reports that would maximize their value to stakeholders (referring individuals and clients). they believed the evaluation conducted by the main referring agency lacked significance, but consciously adapted to it to minimize the risk of losing referrals. at the same time they were motivated to build evaluation that was more meaningful. . . organizational cultural context. consideration of cultural issues in evaluation practice is not limited to language, ethnicity or nationality, but also extends to stakeholders’ diverse or unique frames of reference. these may be perspectives shared by some stakeholders that are important for making programs more effective or fair. . . . insurance system culture. the biomedical site staff described an insurance system culture. bm explained how this culture was manifest. i mean there’s always the tangible, clients sometimes see us as [worker’s compensation] so some people feel adversarial a little bit. they see that [worker’s compensation] is forcing them to do something that they may not necessarily want to do. some people are very angry. they think you know their employer is at fault that they’re hurt. and sometimes that gets redirected to the person that they’re working with….[or]…a lot of the clients we see with [government auto insurance] they were not at fault. they were driving doing everything right and someone hit them. so they feel that it is not their fault that they’re in this situation and they feel that the therapist is a representative of how [government auto insurance] is trying to push them to go back to work. sometimes before they feel that they are ready to go back to work….. i think employers too have a bit of a fear sometimes, that well this person has been hurt in a car accident and what happens if they get hurt at the work place. is that going to affect the [worker’s compensation] injury and does that then affect my [worker’s compensation] premiums? bm elaborated how clients may express hostility, transferring their anger from the referring organization to the bm site, i may think oh that that person already was biased when they walked in the door. it wouldn’t matter if i had given percent they will always find wrong with anything…. the claims management system. the way that their claim has been handled to that point. they view me as pretty much, even though we are separate entities from the [referring organization] and are contracted out, the client will always ask you if you work for [them]. they might even perceive that you still work for them because you are on contract. so right away they have a bias when they walk in the door. to deal with these client perceptions in some cases bm did not submit the client’s satisfaction survey to the referring agency, predicting it could work against the biomedical site if this misdirected anger resulted in a negative client satisfaction score. bm withheld the data, even though she knew this would lower the key performance indicator score for percentage of client questionnaires returned. [the return of questionnaires should] be ideally percent….but sometimes…the client is so upset the whole time you think the only thing they will do is destroy you, even though you did your best. you might think okay i’ll let that one go because that one will not affect the quality of my service. the bm site staff had adapted to insurance culture anger by manipulating post service client surveys, and by developing strategies of positive communications with each client from the onset to completion of services. from the moment a client walked in the door certain socialization tactics were used. bm explained her rationale, what could i do to change things? so should i talk less? should i observe more? should i make the person more at ease? should i offer them a coffee in the morning right at the start to kind of diffuse any kind of situation that is from their past experiences that they may want to apply to this? just make them more comfortable, feel respected, someone cares, but also at the same time you don’t want to be overly caring because that’s not my role. i am there to provide objective data on a person’s ability to function physically and in the workplace. so i have to still maintain a very professional attitude. i am not going to be taking the role of a friend. i am still very much an occupational therapist, a professional that needs to gather information and who expects the client to do their very best during the whole time. the biomedical site responded to the potential impact they perceived the insurance culture would have by selective data reporting to protect themselves with the expectation this would affect the likelihood of having their contract renewed with the main referring agency. . . evidence of evaluation grounded in a biomedical paradigm. the biomedical paradigm was the first conceptual model applied in disability management, at a time when disability was primarily understood to involve physical events (franche, frank and krause, ). the biomedical perspective assumes the body and mind are separate entities and the focus is on a physical condition and its treatment. a physician is responsible for control and treatment and clients are dependent recipients, a model predominant among health care professionals (schultz, et al., ). the core of the biomedical model is, “careful observation, the systematic collection of information, and objectivity” (p. ), which create evidence based practices influencing treatment decisions. “the espoused core value of the biomedical model is scientific truth, based on scientific evidence” (p. ), suggesting that accuracy of evaluation findings about services may be most important to the biomedical paradigm. the bm site provided four main services that could be evaluated: functional evaluations of clients’ physical capacities, job demands analyses, development of graduated return to work plans, and overseeing return to work plans. the bm site’s evaluation by the main referring agency did not address accuracy of these services, nor did it address usefulness of the bm site’s reports on these services. not only did the main referring agency not address accuracy, but the bm site reported that the referring agency passively condoned inaccurate information documented in other providers’ reports. bm reported that multiple reports of other providers forwarded to her by the main referring agency as background information on clients, included conclusions that deviated from evidence, for example misleading conclusions based on the details of client functioning provided in the reports. bm inferred that the other providers may have done this to meet the main referring agency’s expectation that programs achieve an % success rate on finding workers able to return to their jobs after treatment, in order to continue to be eligible to receive ongoing referrals. bm explained inaccuracies in those reports, i found that a lot of clients are discharged as fit to return to work without [limitations] or fit to return to work with limitations when they are still not, because that is an important for them to keep their contract. to get more referrals, or to get viewed by the [referring agency] as effective, they need to have a success rate of returning people to work of i think it is above %. bm confirmed the pressure was always there to meet the referring agency standards, and to discharge clients as fit to return to their regular jobs, “yes it is always the other way around. the picture is always rosier than really what it is.” bm suggested interests of the referring agency, rather than the interests of the clients or employers, were being served by evaluations that overlooked these discrepancies. [reports] are serving the referral source, not the client directly. of course they are providing the best service they can to the client, but their measure of success does not come from the client himself saying to them i feel really much better from your intervention. it’s from the [referring agency] saying hey you guys are doing great. at least % of the clients you discharged are fit to return to work. if these reports were as described by bm , in passing them on to other providers in their network as valuable, the main referring agency risked vicarious learning on the part of network providers that could result in increased errors in reporting. external evaluation of the bm site conducted by its primary referring agency did not reflect the focus one would expect within a biomedical paradigm since the criteria of timeliness and client satisfaction could be relevant across all disability management paradigms. however, the referring agency’s evaluation used standard indicators and measurements, which is a characteristic of the biomedical paradigm. the bm site’s internal review of the quality of their reports, accuracy of measuring equipment, and employer and worker feedback on the accuracy of job demands analyses, did reflect grounding in the biomedical paradigm that valued objective evidence. . . . discussion. formal evaluation at the bm site was conducted externally by the referring agency giving the bm site no input on criteria, standards or indicators. four program outcomes were evaluated: timeliness of first client contact, client satisfaction, number of client satisfaction surveys submitted, and timeliness submitting the final report. feedback was provided to the bm site every three months on the key performance indicator. learning from evaluation at the bm site was pragmatic and directly a consequence of evaluations provided by the external main referring agency on the four service outcomes. evaluation feedback was a driving force for the bm site, resulting in changes to their practices so they met the agency’s standards. the bm site learned to meet the timeliness standards for both client contact and submitting reports, ensured all clients were administered the client satisfaction survey, and submitted most of the completed surveys. the bm site also learned to manipulate administration of the client satisfaction survey, and on occasion did not submit responses that reflected poorly on their program, where bm believed negative feedback had been biased against them unfairly due to insurance claim biases. this adaptation did not necessarily generate improvements in the services provided, but was a response to the referral agency’s organizational culture (patton, ). adaptation by the bm site was a conceptual theme that emerged throughout discussions with participants about evaluation. the bm site participants did not believe the evaluation criteria were the most important criteria, but they had no opportunity to provide this feedback to the referring agency. whereas external evaluation could normally be characterized as maintaining objectivity, transparency, and perspective of the evaluand (barrington, ), the referring agency’s evaluation was alienating given the absence of dialogue between the organizations. the referring agency’s evaluation was organized and efficient, provided clear indications of the criteria and standards, and gave regular feedback, leaving the bm site with the perception that if they were meeting standards contracts would be secure. for the most part this was the case however not always, as an unpredictable and sudden loss of a contract did occur. however, lack of communication between the referring agency and the program staff resulted in incomplete information, misunderstandings, invalid outcomes and lack of data beneficial to the bm program and their clients. . labour paradigm site . . context and framework of this program. the labour paradigm site was an in-house disability management program available to - employees of a large unionized multi-site organization. most employees of the organization were office workers and a small number worked in trades to oversee the physical operations of the facilities throughout the province. the goal of the program was to assist employees to stay at work, return to work, or adjust to permanent disabilities and not being able to work after they had sustained injuries or illnesses. the one condition for voluntary participation in this program was having had a disabling injury or illness, physical or mental. clients may have had insurance claims, such as long term disability insurance claims, or be off work with paid sick days from the employer. the program did not assist with labour relations issues. a joint steering committee comprised of equal numbers of senior union and management representatives oversaw the program, including determining policy and guiding procedures. the joint committee selected program coordinators from among union or management applicants that applied for the jobs posted within the organization. the program employed four full time coordinators. participants and (l and l ) were union members working as program coordinators, and served clients who were union employees. participant ( l ) was the labour site program manager and also a program coordinator who served clients who were management employees. the main responsibilities of the program coordinators were development and implementation of return to work plans for clients, and acting as liaison among all other parties. their primary communications were with the client (i.e. union or management employee accessing the program) and the manager of the client’s department. the program coordinator, client and manager worked toward successful reintegration of the client back into the workplace. throughout this process there were open and iterative communications among stakeholders and ongoing feedback that contributed to modifications of the return to work plan as needed. l , the labour site program manager was a consultant to the other program coordinators in addition to being the program coordinator of return to work services for management clients. i am responsible for the day to day guidance [and] management of the coordinators and if there were any issues regarding individual files that were complex or perplexing, that [they] needed to chat about, maybe the direction that a particular file should go, then they would come to me for that. (l ) throughout development and implementation of return to work plans the program coordinator met regularly with clients to discuss the plan, as well as with the client’s manager to negotiate appropriate adjustments to the plan if any physical, psychological or social obstacles to return to work were identified. the team consultation was to ensure dialogue, collaborative participation and support, working together to identify and manage any unforeseen issues toward a successful and durable return to work. figure illustrates communication among program stakeholders at the labour site as described to me by the labour participants of this study. in developing this diagram i forwarded a first draft to l and requested feedback, and his recommended modifications were incorporated. . . evaluation practices within the labour site. . . . value of evaluation. program coordinators were aware that satisfaction of both the client and the manager of the client’s department were necessary to successfully integrate the client back into the workplace. throughout provision of services program coordinators ensured there was open dialogue among the three stakeholders to make any necessary modifications to the return to work plan based on new information. to formalize evaluation and make long term improvements to the program, the steering committee administered a client satisfaction survey and a manager joint return to work program survey to every client and manager at the end of services. figure communication among program stakeholders as described by the labour participants dm program joint committee union rep management rep union management union client management client client’s physician client’s manager other union workers client’s physician ltd program f&s f f&s f f&s f f=formative ongoing evaluation; s=summative evaluation feedback checklist; f&s . . . goals of evaluation. services at this site were to accommodate each employee who was able to return to work after injury or illness, with suitable and meaningful employment, and doing so with management and union collaboration. the program relied on the program coordinators’ informal reports on the outcomes of individual cases, and on completion of client satisfaction surveys and manager joint return to work program surveys to assess the success of the program. by way of formal measure we don’t have anything in place. but certainly the successes that each of the coordinators experience when working with the individuals and getting them back in the workplace. (l ) l suggested meaningful criteria for evaluation should include return to work success rates and cost savings (long term disability or sick day costs) that resulted from interventions of the program. the organization was developing a data management system to measure program outcomes such as early initial contact by the program versus late contact and return to work outcomes for those who had accessed the program versus those who had not. l believed the most important evaluation criteria were whether the program was getting people back to work and the organization’s responsiveness to employees’ needs, especially flexibility in work accommodations for employees. . . . stakeholder involvement. stakeholders at the labour site included the joint committee, program coordinators, clients, clients’ managers, union and management employees, and other professionals treating clients. during initial provision of services the labour program coordinator acted as liaison among all other participants. the program coordinator, the client and the client’s manager collaborated on development of a suitable return to work plan, and over time dialogue continued among this team for feedback and to make modifications to improve the plan as necessary. after completion of services the program coordinators administered satisfaction surveys to each client and manager. clients submitted their completed surveys to designated union administrators and management submitted their completed surveys to designated managers of the organization. completed surveys were then forwarded to the program steering committee. according to l the joint steering committee gave program coordinators feedback based on a review of the survey results “…if anything sort of jumps out…any trends.” after consulting with the joint committee to ensure that both union and management views on the most useful data were considered, a computerized data base was being customized by the human resources department, to enable future data analysis for evaluation of the program. . . . evaluation data collected. two years prior to this study, steering committee members created the client satisfaction survey and manager joint return to work program survey, which are the primary formal evaluative data collected. the program coordinators participated in creation of the surveys. once client services were complete each client was administered a two page summative client satisfaction survey to determine the client’s level of satisfaction with services. the steering committee was the primary audience for the survey results, which were used for continuous improvement of the program. the survey included items: four items addressed the referral process, four addressed return to work planning and implementation, and four addressed the client’s overall satisfaction with the program. items’ responses included: yes/no, choosing among listed alternatives, likert scales from to (not acceptable, needs improvement, good or excellent), and narrative comments. each client was also offered an opportunity to discuss concerns they may have had regarding the program with a member of the joint return to work steering committee. at the end of services the manager of each client was administered a four page joint return to work program survey, comprised of items: eight items addressing the referral process, six addressing return to work planning and implementation, six addressing the manager’s role and responsibilities in the return to work process, and six addressing the manager’s overall satisfaction with the program. items responses included: yes/no, choosing among listed alternatives, likert scales from to (not acceptable, needs improvement, good or excellent), and narrative comments. both the client satisfaction survey and the joint return to work survey once completed went to the steering committee for analysis of results, although the identities of survey respondents were not disclosed. l described data in the new data management system that would be used to evaluate the labour program’s outcomes and milestones. these included: administrative data (listing of all referrals to the labour site program and assignments to coordinators), referrals (information on individual cases and assignments to coordinators), return to work files (historical and demographic information on clients, ongoing memos on the current case, and case closure information), and records of accommodations made during the labour site service (case outcome information, program milestones, permanent and temporary accommodations). “we are now using the new data base to manage the statistics and trying to look at the first day that [clients] were expected to return, and did we actually meet that timeline” (l ). the data system would also be used to analyze cost savings through reduction in disability benefits and sick days, as well as return to work statistics of program clients compared to staff who did not access the program. . . . use and reporting of evaluation data. the steering committee analyzed the client and manager surveys and used the findings to direct and improve the program and provide feedback to the coordinators. program coordinators regularly attended steering committee meetings to ensure ongoing communications between those who operated the program and those who oversaw it. the program coordinators relied on this evaluative feedback to understand what was most important to clients and managers. l and l both learned how important it was that managers be “kept in the loop” and informed about their workers who were not working in order to facilitate staffing of their departments. l explained when clients are returning to work, “maintaining communications is hugely important for the managers so that everyone knows exactly what the plan is and where things are progressing”. l also found feedback from the survey results to be frustrating. she felt complaints were sometimes misdirected toward the program when perceived problems did not originate within the boundaries of the program. for example, on occasion managers wanted to have more control and complained that a program coordinator should have contacted a client’s physician because the manager did not agree with the functional limitations the physician provided. however, program coordinators saw this as a medical decision and not disputable by them. l described how a most useful source of evaluative information for the labour site program was the ongoing formative feedback that drove decision making and modifications to the plan as needed, throughout implementation of each individual return to work plan. l advised this was achieved by labour site coordinators acting as a liaisons among all participants whenever needed, and commitment by the program coordinator, client and client’s manager to collaborate. the labour site was the only site of the four participating in this study that conducted summative evaluation on the criterion return to work. this site also used the client and manager satisfaction surveys and ongoing dialogue among the three stakeholders, program coordinator, client and client’s manager, for formative evaluation. . . . summary of evaluation practices. this program emphasized the balance between union and management perspectives manifest in the joint steering committee. all program staff deferred to the joint committee for decision making, and all evaluation was sanctioned by them. table summarizes evaluation practices at the labour site in terms of three essential components, ( ) evaluation criteria, ( ) data sources, and ( ) use of findings. a data maintenance system created by the organization’s human resource development department in consultation with the joint committee was being tailored for summative evaluation of how well the labour site was meeting goals. in the future, the expectation was that systematically collected data would be extracted to evaluate program outcomes and impacts. . . evaluation practices and organizational learning. l confirmed how learning was valued at the labour site, “learning is very promoted, and the opportunity to learn…is promoted” and that the labour program had grown due to the organization’s commitment to learning, table evaluation activities at the labour site criteria data sources program’s use of findings return to work plan success iterative communications among program coordinator, client and client’s manager modified return to work plan *client satisfaction client satisfaction survey modified services client satisfaction joint committee exit interviews with clients modified services *manager satisfaction manager summary questionnaire modified services program functioning joint committee feedback to program modified services program outcomes peoplesoft data base joint committee and organization analyzed findings note: *= satisfaction surveys administered to all clients and client’s managers i believe we are the organization that others will come to learn from. i think we have only become that because we have learned from others. you know we are taking the good bits and creating something really great. (l ) “feedback prompts some process changes and adjustments in the way we do things. through learning we think, okay, we need to make a change in the program. so that is how we use learning” (l ). all three participants from this site valued feedback from the steering committee and the client and manager surveys so they could collaboratively plan and implement processes that met stakeholders’ needs. l advised the organization encouraged ongoing education and learning for all staff. l and l had been sponsored by the organization to complete a three year part- time on-line disability management program offered through the labour based organization nidmar that familiarized them with the basics of disability management. . . . summary of role scores at the labour site. overall, role responses of the three labour site participants confirmed information provided in their interviews. all three described how the labour program achieved balanced collaboration between labour and management, open communications, and had integrated processes to learn from evaluative feedback. role scores of l , who referred to the organization, were consistently lower than scores of both l and l , who referred to the labour site program. role scores patterns of all three participants taken together suggest the labour site program was more attuned to readiness for learning and evaluation practices that support learning, than was the organization as a whole. this is a reasonable assumption given the efforts the labour site program had made to develop and maintain evaluation that was inclusive and used for learning. while the organization as a whole was in the process of developing data management systems to eventually be used in evaluation (including program outcomes), the labour site program had already integrated evaluation into the program and used findings to make service improvements. . . organizational cultural context. the labour site coordinators described adapting to both union-management and mental illness cultural perspectives, and that each perspective had the potential to impact services to clients. . . . union management culture. l advised, “labour relations speak to the program and ways in which coordinators have learned from experience to act as conduits”. we are a unionized environment and so if somebody is off sick, particularly if it is a mental health sort of thing, if a manager phones the client just to see how they are doing and how things are going, there is some concern. sometimes the employee can be very sensitive about that and can take it the wrong way. they can look at it and think my manager is harassing me and doesn’t understand i am not ready to come back, even when the manager’s contact is well intended. to minimize this possibility the labour site program coordinators maintained regular contact with clients when they are off work, and proactively informed managers about clients’ progress. sensitivity to this union-management culture was one of the things l was guided by. the union environment culture of the program was apparent when clients argued for their rights within the collective agreement, which in turn conflicted with progress being planned for a graduated return to work schedule. l described how a union management relationship could create divisiveness, and found it “unfortunate” that management employees worked only with the manager program coordinator and union employees worked with union program coordinators, “i think it is [unfortunate] because it perpetuates the me and them. and i am supposed to be everybody’s return to work coordinator, right?” there was no negotiation of the union management structure and evaluation was imbedded in the dual perspectives. the satisfaction surveys were an example of assessing the program from these two different perspectives and the joint committee took on the task of analyzing results from a third perspective, the whole program. . . . stigma of mental illness. mental illness was an impairment within disability management that program coordinators recognized as sensitive and stigmatizing. l explained that compared to physical illnesses there were taboos in the workplace surrounding talking about mental illnesses. mental health related issues are i think hush hush. i think we have made some ground generally…as a society to be more accepting, and it is okay, it is just another disability. but i think we have quite a far way to go. l explained how working with clients with mental illness was further complicated when co-workers were ignorant of the functional limitations mental illnesses could create for a worker being reintegrated into the workplace. i just think over time that existing staff become a little frustrated especially if it is maybe a mental health related condition. where the person looks fine but only has to do half the work that [co-workers] have to do. and it gets back to the whole mental health and the stigma and just how accepting or not accepting organizations are. establishing a return to work date was more ambiguous for mental illness than physical illness, making it “hard from an operational perspective.” (l ) “the whole purpose of duty to accommodate is so people cannot be discriminated against, because of their disability, religion or anything else.” (l ). . . evidence evaluation was grounded in a labour paradigm. at the labour site disability was not treated as a medical disease. program coordinators were provided with the clients’ functional limitations and residual abilities, and then worked to identify employment that matched these. the program focused on integrating workers within the work setting so that impairments were not necessarily barriers to work and the evaluation criteria matched that of the labour paradigm for return to work. the labour paradigm in general includes disability management that values a team approach, involving collaboration among the worker, employer, health care team, worker’s treating physician and union (loisel and durand, ). evaluation at the labour site of this study was grounded in this paradigm as it addressed evaluation criteria identified by loisel and durand ( ) (return to work, time off work, financial costs, quality of life, learning in the workplace, ergonomics, and multidisciplinary at-work interventions), and did so collaboratively with all parties, including equal representation of union and management. l , l and l valued returning clients to suitable and durable employment and recognized the importance of evaluation to address how successful they were at achieving this goal. return to work was the main objective of this program and a new data management system was being customized by the organization to evaluate the program’s return to work outcomes and milestones. . . discussion. the joint steering committee represented equally by union and management oversaw all program policy and procedures, including development of evaluation. there were two main forms of evaluation at the labour site. during development and implementation of return to work plans program coordinators collaborated regularly with individual clients and their managers for analysis of the unique combinations of client and contextual factors at play, and for formative evaluative feedback to guide the process. after completion of services, program coordinators administered client satisfaction surveys to every client, and manager joint return to work program surveys to every client’s manager. clients were also offered an opportunity to meet with a member of the steering committee to voice any concerns. completed surveys were forwarded to the steering committee for analysis. if anything “jumped out” (l ) from the survey results, the steering committee provided feedback to the program coordinators who relied on feedback from the steering committee to understand what was most important to stakeholders and to guide them in meeting program goals. coordinators agreed the organization valued learning and was developing new sources of data management for evaluation. a main conceptual theme at the labour site was the value placed on open communications and collaboration among participants involved in each case. feedback was an opportunity to learn about individual cases and program procedures in general. coordinators acted as liaisons among all stakeholders, ensuring input from multiple perspectives, including the steering committee, clients, clients’ managers and treating professionals. equal representation of union and management interests created a system that operated with respect, where the steering committee was available to mentor during resolution of conflicts, freeing stakeholders to present their own perspectives without fear of opposition. the labour program was in the workplace, which offers ideal opportunities for multidisciplinary interventions to resolve multi-factorial problems that can arise relating to the individual (medical, psychological, affective and social) and the individual’s interaction with contextual factors (loisel et al., ). evaluation within a system at the workplace had the potential to proactively address specific individual and contextual situations that arose, contributing constructive feedback attending to that diversity. barriers for the program included rigidity from strict collective agreement job descriptions that did not allow for modifications of duties to meet clients’ needs. misunderstandings arose among clients’ coworkers when clients were perceived to be getting special treatment with modified job duties, but due to confidentiality rules, clarification was not possible and clients’ social success sometimes became threatened. . biopsychosocial paradigm site . . context and framework of this program. the bpsy site provided vocational rehabilitation services within a large government funded multidisciplinary health services organization that offered inpatient, outpatient, and clinical support services. the organization operated four programs for clients: brain injuries, spinal cord injuries, arthritis and/or neuromusculoskeletal conditions, and a division for young adults. any allied health professional could refer clients, or they may be self-referred. clients could be any age except children or adults over . one of the unique characteristics of this organization was its multidisciplinary approach to service provision. the multidisciplinary services drew from psychology, social work, pastoral services, occupational therapy, physiotherapy, nursing, speech language pathology, physiatry, orthotics, dietetics, music therapy and art therapy. services were also included in the areas of sexual health, drug and alcohol treatment, specialized surgical teams, assistive technology, recreational activities (from playing cards to sky diving), peer mentoring and spinal cord and brain injury education. as well as being multidisciplinary, this organization was interdisciplinary. at the same time that clients received vocational services of the bpsy program, they also may have been receiving services from any number of the other departments within the organization. practitioners from the various programs were expected to engage in dynamic communications about services provided to individual clients. this communications among departments was evidence of a learning culture, described by preskill ( ) as, “a culture that encourages employees to engage in reflection and dialogue believing that individual learning leads to organizational learning” (p. ). the bpsy site employed two full time and one part time counsellor to provide vocational rehabilitation services. bpsy was one of the counsellors and the team leader. bpsy had formerly been a counsellor at this site, having worked there for a couple years several years previously. the bpsy model highlighted substantial communications among program service providers described by bpsy as a process of cross-pollination. figure illustrates communications among the interdisciplinary programs available to clients at the bpsy site as described to me by the bpsy participants of this study. in developing this diagram i forwarded a first draft to bpsy and requested feedback, and his recommended modifications were incorporated. . . evaluation practices within the biopsychosocial site. . . . value of evaluation. the organization on the whole lacked formal outcome measures. we don’t have satisfaction surveys, we don’t have follow up, as to outcome. if we have made a specific recommendation we don’t necessarily know if that took place. it is an area that we are lacking. we make follow up phone calls [to find out whether] the person did get connected to where we thought they were going to be…we do have sometimes a review where we will phone somebody back…a couple of months later but that’s not done too consistently….or the person will phone us back….we just sort of try working with the client up to a certain point and when they have found work or connected to another agency we close the file. but we don’t have a long term understanding of what happened. (bpsy ) evaluation at the bpsy program was predominantly informal and formative. bpsy had been trying to develop a system to maintain thorough records of cases the program handled and program outcomes. this effort was initiated in part due to her perception that potential funding cuts in the organization might immediately impact the vocational rehabilitation program. (this concern seemed warranted since bpsy reported there had been counsellors working in this program in and bpsy reported the number was down to . full time equivalency positions in .) the organization had a quality control committee, but according to bpsy “it has never had any impact or done anything noticeable.” recently, however, a patient services manager, also a member of the quality control committee, requested information on the bpsy data maintenance system, so bpsy had been developing a data record system for her department. there is no organization wide system for collecting information about what we do, which the whole organization is aware is very poor. so they are actually sort of struggling to find some way to do that now. and there is a committee that just asked me what data we collect about patients, because they are trying to create some more general system. they are now going to all these groups like me who figure communication among interdisciplinary programs available to clients as described by the biopsychosocial participants client a b c d i h g e f j team leader dm program a sample of the services available to clients include: a=psychological counselling; b=social work; c=sexual health; d=drug & alcohol counselling; e=pastoral services; f=spinal cord or brain injury education; g=occupational therapy; h=physiotherapy; i=nursing care; j=specialized surgical support. (others services include: speech language pathology; dietary counselling; assistive technology; orthotics; physiatrist; recreation therapy; peer mentoring; music therapy; art therapy; pet therapy; and adolescent young adult program services.) made up our own methods… to track what we are doing….so we have all these little idiosyncratic systems within different departments. . . . goals of evaluation. the mandate of this program was to provide support, counselling, referrals, guidance, and career exploration during the earliest stages of acute conditions. bpsy felt that ideally the goals of evaluation should focus on early interventions and formative evaluation. bpsy suggested that timeliness of services was not as important a criterion as was continual availability of services. inpatient clients at the beginning stages of medical treatment could be referred to the bpsy program for provision of support long before actual return to work was being considered. bpsy provided an example. we might go in three weeks after injury when they are still in their traction bed and dealing with all kinds of life issues and way before activities of daily living….when they are still wearing a metal halo and trying to figure out which part is paralyzed. we might go in early on to let them know there are services available, you are not alone, there is vocational assistance that will happen, here are some of the occupations that people do who have your [type of] injuries…it was supportive counselling. and it was often times provided as [the client] requested it. in contrast, bpsy felt that given the limited time the program had to provide services, instead of early interventions the focus should have been on developing return to work plans and summative evaluation of whether those goals were met. very early vocational counselling involvement may be supportive overall, but it was more important to wait until clients were ready to develop a realistic return to work plan. …a huge amount of time [would be] spent talking to people…about something that is so far down the road, [when] we find that many people’s return to work abilities or goals shift from the acute time to the time they [are ready for return to work assistance]. bpsy explained how the organization established goals for each of the clients and evaluated progress in meeting those goals. …for each patient the chart has a section ….smart goals…written in language that is very specific. will walk fifteen feet, will know about benefits for people with disabilities and be able to apply, or will be able to eat independently ….whatever these goals are, is all listed in the [patient’s] chart. and then they are ticked off as achieved or not. so i would say that is evaluation….that is probably what i would be going for, trying to get our goals a little more succinct at the beginning of working with a client and then evaluating if the goals were achieved. the program used a system called smart goals that frame goals positively, “in terms of something a person can learn to perform well” (latham, , p. ). the acronym smart refers to goals that are specific, measureable, attainable, relevant, and have a timeframe. . . . stakeholder involvement. stakeholders at the bpsy site included staff and volunteers from all of the multidisciplinary departments within the organization, clients, and client’s external treatment professionals, families and supporting friends. referrals to the bpsy program were triaged by the team leader, who selected some clients to accept for services and referred other clients directly to other services. only some referrals were accepted due to high volumes that exceeded the program’s capacity to provide services. during the time client services were provided the team leader (bpsy ) recorded each client’s involvement in the bpsy program into the data base she was creating. this data base was intended to eventually be used for evaluation of program functioning, although that was not yet being done. bpsy advised there had been no formal evaluation procedures in place regarding the bpsy program including no client satisfaction surveys. bpsy reported counsellors in the program received performance feedback from the team leader and an organizational supervisor. the team leader was responsible for overseeing the work of the program counsellors and provided evaluative feedback related to the vocational rehabilitation profession on specific cases during mentoring sessions as needed. each counsellor in the bpsy program had also been evaluated by an organizational supervisor every - months, on topics not specific to vocational rehabilitation but to more general skills related to the organization such as record keeping. the assistant to the director of the organization advised that administration within the organization frequently changed, and most recently there had been only two levels of management, an operations director overseeing the entire organization and managers of the individual programs (including bpsy ). the assistant said that if performance reviews were still conducted they would now be administered by program managers rather than organizational supervisors. . . . evaluation data collected. although there was no formal program evaluation at the bpsy site, there were several data systems in place that could eventually be accessed as sources of data for evaluation. the first was the team leader’s data base that categorized the following information on the bpsy site’s clients: file status, urgent or regular, name, program, vrc, phone number, referral date, date file opened, last chart update, date file closed, comments/outcome, address, referral source facility, referral source clinician, diagnosis, birth date, referral month, year, fiscal year, and wait time in days. bpsy noted this information was not coded, and therefore not used for evaluation. the bpsy team leader also maintained records of the needs assessments conducted on all incoming client referrals, information she used to triage whether the referrals were accepted into the program, or were referred directly to other organizations that offered more appropriate vocational services. bpsy advised a third data management system within the organization may eventually be accessed to evaluate the bpsy and other programs. the quality committee had recently collected data management systems that were in place within all the programs of the organization, and in time intended to integrate all the various systems into one standardized organization wide data maintenance system. . . . use and reporting of evaluation data. feedback provided to the bpsy program counsellors by the team leader was informal and focused on mentoring the counselors in their work; no records were maintained. bpsy described how mentoring was provided in relation to vocational rehabilitation, “…in the same way any boss would monitor an employee in terms of feedback about specific areas of practice, providing information, or …encouragement, or whatever you needed around how you were delivering services….” bpsy reported feedback that had been provided by the organizational supervisor on performance involved administration of a generic checklist to all professionals in the organization, in a one on one interview format every - months, focusing on general organizational standards including ethical practices and documentation. i would also report to a supervisor in the nursing department who was a hospital supervisor, hospital administrator. her training was nursing and she wouldn’t gainsay me on vocational things in terms of the vocational services i was providing because that wasn’t her expertise. but she would provide mentoring and sponsorship or supervision basic work practices. so things like entering logs, you know keeping my records up to date, you know general work performance evaluation. (bpsy ) according to bpsy professionals from all departments within the organization maintained regular dialogue with each other and informally shared feedback about the provision of services. feedback from clients, however, was anecdotal. . . . summary of evaluation practices. table summarizes evaluation practices at the bpsy site in terms of three essential components ( ) evaluation criteria, ( ) data sources, and ( ) use of findings. bpsy reported that several years prior, the program had forfeited provincial government funding equivalent to the salary of one full time counsellor, because funding was contingent upon introduction of outcomes based evaluation, an approach the program disagreed with. bpsy indicated that program counselors did not believe evaluation of the program should be limited to “statistical outcome calculations.” they believed focusing table evaluation activities at the biopsychosocial site criteria data sources use of findings formative feedback during provision of services informal communications among bpsy counsellors and with those operating other services within the organization modified services quality of vocational rehabilitation counselling services meeting with team leader modified services quality of general services to organizational standards hospital supervisor administered questionnaire modified services client progress on smart goals smart goals documented in client chart planned client interventions client satisfaction communications with client modified services on outcomes would cause the program to diverge from its intention to be continuously available for vocational consultation to clients at any stage of recovery, from early on at the intensive care stage to later stages when clients were ready to establish return to work goals. the government…wanted to change to a performance based model and …have an outcome based performance evaluation... [with funding based on] outcomes, putting people through programs, and being paid a certain money for planning, a certain amount once they are in job training, paid once they are in job search, and paid when they actually find a job…. in good conscience the program …couldn’t ask a voc rehab to suddenly go start doing job development and place people. they were convinced that it would be such a different role for a voc rehab…. they actually agreed to lose a position worth of funding …because they weren’t ready to tool up and add a new role. . . evaluation practice and organizational learning. the foundation of the bpsy site and the programs within this organization was the value placed on inter- disciplinary communications, continuous overlap of services, and collaboration on every individual client case. this approach was described as “holistic” by bpsy . each program offered a professional specialty that on its own would not have accomplished the goals of the organization, making it imperative that the disciplines worked collaboratively. evaluation of this inter-program collaboration was informal, continuous, and formative, achieved through discussion among the multi-disciplinary professionals and with clients. the bpsy program counsellors were supportive of each other, holding weekly team meetings to discuss cases and share information. individual counsellors discussed their needs and were directed to resources, such as recommendations of books to read. according to bpsy , counsellors from the bpsy site were expected to attend vocational rehabilitation association meetings and to maintain their professional designation. they were expected by the organization to conduct ethics presentations, and to contribute to the organization by hosting educational sessions and providing information and feedback to other professionals. the bpsy program counsellors also contributed to clients’ learning, “for example we had a rehab rap night where all of the spinal cord folks would invite the vocational rehabilitation counsellors to talk to the whole group, as opposed to talking to individuals” (bpsy ). counsellors in the bpsy program were expected to contribute in groups and “to provide collateral support.” and there was a lot of learning and a lot of challenge because many times you would think oh i have an idea about this disability, and then you would be confronted about the reality of it. be confronted with reality of somebody with completely different mentality and lived experience of whatever they were dealing with. and then you would have to try to integrate that into your understanding. (bpsy ) bpsy described the organization’s peer mentor program: a peer mentor, a spinal cord injured fellow who had the least education in the room, sometimes less education than the client, but he had the most to teach in terms of life experience with a spinal cord injury. he was an amazing fountain of knowledge and wisdom in terms of how to manage spinal cord injuries and how to live with the consequences of the changes. because the consequences of his own life were so profound, and he had moved through them so well. cross training between groups within the organization was common. bpsy described the communications among all of the disciplines that occurred as they worked together on individual cases as part of evaluation. he used the term “cross pollination” to describe this interdisciplinary nature of the organization. bpsy reported learning a great deal from these interactions and feedback he received, working together with other professional and peer workers. he described being immersed in a system where over time he learned to view disability through the eyes of peer mentors and lived experiences of disabilities. one of the largest professional groups was the recreation department, where programmatic activities ranged from playing cards to sky diving. activities such as skydiving originally amazed many professionals from departments other than the recreation department, but they quickly learned from positive firsthand accounts of the clients. bpsy described a client who had gone skydiving after just stabilizing from a catastrophic disability that resulted in his having to use a wheel chair, and sustained leg fractures while skydiving. he was actually ecstatic because he had had such a high and felt like he was alive again. on all these levels it had been a wonderful experience for him, and the fact he had broken his legs was an inconvenience he really didn’t care much about. it was this program that many clients seemed to value most of all for its potential to return them to the high risk behaviors that they had loved prior to their injuries. discharge meetings were another opportunity for professionals from the various disciplines (doctor, nurse, physio, peer mentor) to share their perspectives on the program. . . . summary of role scores at the bpsy site. overall the role scores for both bpsy participants confirmed information they provided during interviews that the organization lacked formal evaluation procedures, but the organization was starting to build evaluation capacity. ratings on the role category communication of information were low for both participants as there was currently no organizational data management system in place. however, ratings were high on the category evaluation, as these participants were aware of the potential contributions evaluation could make to learning and to improving program services and outcomes. the organization was in the process of developing a standardized data management system organization wide that could eventually be accessed for evaluation. the high role scores for both participants on categories culture, leadership, systems and structures and teams reflected the value placed on organization’s multi-disciplinary inter-disciplinary systems. . . organizational cultural context. the bpsy site could be characterized by its “peer mentoring and lived experiences” culture. there were no stigmas related to disability within the organization, but there was recognition that outside of the organization their clients would likely experience stigmas, including “stigmas of invisible disabilities.” . . . peer mentoring and lived experiences. a perceived strength of the organization was that it employed many counsellors with physical impairments who brought to the services a genuineness that spoke to the clients more than professional knowledge could. peer mentoring was perceived to be the most effective strategy within the organization. so here was a counsellor who had double masters in psychology and education, but he was also in a wheel chair and he would not put his masters degrees on the wall. and i said to him at one point, you really got to get your education up on the wall, you know i mean you worked so damn hard for it and he said, no that taught me the tools to do the job, but i think in my current situation it would alienate the people i am trying to work with. that they see me as the job guy who is also in a wheel chair, and the credibility i have comes from the wheel chair, not the masters degrees. and so i took his lead and i took my degrees down, because i appreciated the fact that a year old kid would feel safe hanging out with these two guys that knew about jobs, one in a wheel chair one not, and neither of us looked like big official guys because we didn’t have our degrees on the wall. (bpsy ) bpsy gave several examples of the extraordinary abilities of counsellors who had themselves experienced catastrophic spinal cord injuries, in working with clients who had recently become similarly injured. bpsy stressed that rapport with clients and among multi disciplinary coworkers had the greatest worth within the system and was what he believed to be the most critical criterion to be evaluated. . . evidence evaluation was grounded in a biopsychosocial paradigm. the bpsy site used a multidisciplinary approach, where services were integrated as clients accessed different programs at the same time. the organization intervened early on after catastrophic injuries while clients were adjusting to serious life changes in relation to suddenly acquired disabilities. within that process the bpsy site program provided one- on-one counselling to clients throughout their cognitive, physical and social adjustment, and toward their eventual readiness to return to work if possible. bpsy believed the highest worth of their program and other programs within the organization was the open communications and rapport offered to clients. this site reflected a biopsychosocial paradigm where services take an interdisciplinary approach, and where impairment and disability are differentiated, so that impairment alone is not a predictor of disability, as context makes a deciding contribution. the bpsy paradigm in general conceptualizes disability as, “…an interaction among biological, physical, behavioral/psychological factors, and social phenomena (schultz, et al., , p. ). evaluation at the bpsy program was not formally conducted. there were no client satisfaction surveys, no outcome based assessments, no data management systems in place that could be accessed for evaluation. however, there was a growing awareness of the potential value of developing data management systems that could be accessed for evaluation. bpsy had been trying to develop her own data management system for the program and the organization was progressing in developing a system of data management that would be consistent across all the programs of the organization. bpsy program counsellors received evaluative feedback about their performance from two sources: feedback related to the vocational rehabilitation profession from the team leader and a performance review regarding work habits in general. there was no record keeping of the team leader’s evaluation, and no mention of the performance review instrument being used beyond the feedback sessions when it was administered. the bpsy program of this study served clients early on after catastrophic injuries. however, the bpsy paradigm in general can be applied throughout services from the onset of disability, beyond the early adjustment period, right through to the client’s eventual return to work and resumption of life activities outside the hospital. bpsy favored focusing the program’s services on preparing clients for employment nearer to the time they would return to work rather than prioritizing psychological adjustment, whereas bpsy favored services throughout psychological adjustment. . . discussion. there was no formal evaluation in place within the bpsy program or at the organization level. however, communication among stakeholders within the organization was highly developed, with short and long term foresight that benefitted clients as they adjusted to their disabilities. although the organization lacked formal evaluation methods, informal ongoing evaluative feedback occurred among stakeholders as they contributed to services. the bpsy program team leader provided professional feedback through mentoring sessions with counsellors on individual cases relating to vocational rehabilitation practices. as the organization was becoming increasingly aware of the potential benefits of evaluation, data management systems were being developed that could eventually be accessed for formal evaluation. development of data management systems is consistent with one of the first steps of building evaluation capacity, where baseline analyses of processes and needs are undertaken (taylor-powell, ). . insurance paradigm site . . context and framework of this program. the insurance paradigm site was an in-house investigation unit of a large public organization that managed disability claims within one of its divisions. the program conducted investigations into possible fraud or misrepresentation by clients who had sustained injuries or illnesses at work. the program also conducted investigations into possible fraud by external stakeholders including health care providers, vendors or employers, and internal investigations into possible fraud by employees of the organization. participant of this study (i ) conducted external investigations for the insurance site program. participant of this study (i ) was the manager of the insurance site program and conducted internal investigations. sources of referrals originated internally from staff of the organization, or externally from any source including an anonymous tip line. the program had investigators located throughout the province, with oversight by a union member supervisor and a nonunion manager (i ) located in the organization’s main office. half of the investigators were long term employees of the program each with backgrounds that included extensive police work. i was among that group. he had worked for the program for years, and was hired at a time when he and all other investigators in this program had prior employment experience of approximately years working as municipal and rcmp police officers in canada. i believed that former police experience was the most important qualification for an investigator. the other half of the investigators were relatively new employees, with different backgrounds that involved conducting investigations (canadian border services agency, private insurance companies, financial insurance, provincial regulatory bodies, and policing within other countries). one of the newest recruits was hired specifically to conduct internet investigations and data mining, including identification of clients through facebook . i , the program manager of the insurance site, was among this second group. his background was typical of the newer recruits, and included a ba in criminology, a couple years experience as an auxiliary officer with the rcmp, and investigative experience with the provincial government’s criminal injuries services. as the program administrator i hired new recruits whose backgrounds mainly included university degrees. proven ability to succeed at university was what he considered a main predictor of success on the job, rather than the former policing experience that had been the background of the more long term investigators. the perspective held by i regarding long term success on the job has been supported by research (schmidt, ). figure illustrates communication among stakeholders at the insurance site as described to me by the insurance participants of this study. in developing this diagram i forwarded a draft to i , requested feedback, and his recommended modifications were incorporated. communication of information regarding disability management clients flowed both ways among parties except out to external referral sources, as due to freedom of information and privacy laws no information could be released to the public. the investigators used multiple techniques including interviewing, reviewing documents, internet data mining, investigation of documentation authenticity, and contracted out for services including surveillance, videotaping and specialized investigations such as auditing by accountants. cases resulting in prosecutions and court cases involved crown counsel. . . evaluation practices within the insurance site. . . . value of evaluation. when asked the main service of the insurance site program that should be evaluated, i advised, we protect the integrity of the accident fund and just make sure that those people who should be having access to the funds have access to them, and those that are legitimately owed anything don’t get anything beyond what they are entitled to. so if they are entitled to a particular benefit then great. if they are not or they are somehow attempting to fraud the [agency] in some way that is our job to protect the fund. i explained that most of their work led to clarification of miscommunication and validation that the person being investigated had been truthful. the vast majority of material we receive to investigate is such that we do not end up affecting the outcome of that particular file to any great degree. and we establish that the person really is being truthful in which case there is no problem. figure communication among program stakeholders as described by the insurance participants dm program management dm program investigators client s= summative evaluation; internal referral sources included disability claim managers or vocational rehabilitation consultants; external referral sources could include anyone for example a client’s employer or neighbour; crown counsel was involved only on occasion when required to prosecute for criminal purposes. dm program supervisor internal referral sources external referral sources crown counsel s and if there is a question of misunderstanding we will clarify that…. if there are cases of fraudulent activity then again i will deal with that and depending upon the size of the fraud that can go anywhere from a recovery of an overpayment, termination of benefits, to an actual criminal charge…. we tend to find that a lot of this is really a very small problem which is primarily one of misunderstanding. the goal of this program was to approach each investigation in a balanced manner, oftentimes providing information that clarified misunderstandings and bias on the parts of internal or external referral sources. i explained regarding investigations, a lot of times when dealing with someone you create a bias….and so when we get stumped you have to kind of back off and take a look at it through a different set of eyes. and determine whether or not the facts you have are correct or whether or not they are slanted as a result of a bias by the person who is submitting the referral. their investigations could result in settling disputes and overcoming biases, and these outcomes were highly valued by the insurance program. . . . goals of evaluation. a main goal of the insurance site program was protection of the accident fund, so evaluation of the program emphasized the extent to which this occurred. the program maintained records of referrals and outcomes of cases to estimate cost savings that resulted from their services, based on a formula created by the organization’s accounting department. to evaluate quality of services i advised two criteria were examined: time limits for completing each type of service, and confirmation that services have been completed to an acceptable standard based on the professional opinion of the program supervisor. in the opinion of i the most important issue for evaluation was the extent to which services delivered by the insurance program had been sufficient to make an impact that contributed to having support be allocated appropriately, “are the people [insurance clients] getting the support they need, be it financial, be it psychological, or physical”. . . . stakeholder involvement. stakeholders at the insurance site included program investigators, supervisor and manager, clients, internal and external referral sources, other departments of the organization, external service providers, and crown counsel. incoming referrals were assigned to an investigator who worked independently and within established timelines for the particular service. upon completion of services investigators were not permitted to close their own cases. when services were completed investigators emailed the insurance site supervisor who reviewed each file for quality control. once the supervisor confirmed that requested services had been completed to quality standards, the case was closed, and, if the referring source was internal, investigative information was forwarded to the referring source. the supervisor maintained a data base on all cases handled by the program. data included identifying information on each case handled by the program, the number of files handled, projected amount of money saved, and details on criminal prosecutions (based on the actual numbers that were successful in laying charges and where the person was found guilty). organizational accountants accessed data on cases handled by the program to calculate estimated cost savings. it was the understanding of i that the director and vice-president of the division overseeing the insurance site should ultimately be responsible for evaluation of the program, however, these higher levels of management had not been involved in any evaluation. . . . evaluation data collected. two criteria used in evaluation of services were: timeframes for completion of services and quality of completed reports acceptable to the program supervisor. all of the referrals from internal sources had due dates (standards) attached to them. for example, a request to conduct an interview to obtain or clarify information was to be completed and the report submitted within seven days. a request to conduct surveillance had an initial due date of days, which could be extended to or days. cost savings were estimated by the accounting department of the organization, using a formula they created to compare actual costs on client claims where the insurance site services had been accessed, to estimate costs had these services not been accessed. actual costs were based information from a data base the program maintained on their referrals and outcomes. estimated costs without services were based on costs for similar cases not accessing the insurance site services. cases of fraud could result in recovery of benefits and/or termination of further benefits, and could lead to cost savings. i explained how cost savings were evaluated. we have statistics showing the number of criminal charges. we show the projected rate of savings…based upon a formula [the] audit section has created whereby if a file is altered or terminated using this particular computation they will come up with a projected dollar savings. so in the course of the year this unit might save or million dollars in projected savings. that is not necessarily dollars brought into the kitty so to speak, but these are just projected based upon the fact that something occurred which caused that file to be either terminated or altered and the amount of money expended on it reduced accordingly. the insurance site program administered a client satisfaction survey to all staff within the organization’s claim division (past and potential internal referral sources). this survey was not administered routinely, only once every several years. the purpose of the survey was to improve customer service and the variety of services provided by the program. the survey included eleven items: two on the respondent’s demographics, eight likert scale questions (knowledge of the insurance site program, number of past referrals, accessible and helpfulness of the investigator, timeliness of services, information provided, respect and courtesy of the investigator, client satisfaction, and overall rating of the service provided by the program), and one open-ended question on what the program could do to improve the services it delivered. . . . use and reporting of evaluation data. i felt strongly that the organization was overlooking its fiduciary responsibility to publicize accomplishments of the insurance site and related cost savings that had resulted from their work, as an achievement in successful management of the accident fund. quite honestly i believe the [organization] has a veneer but underneath that veneer there is little in the way of substance….the organization will profess they have a fraud strategy. but they seldom will, upon the successful conclusion of the prosecution, ever present that as public knowledge, or even knowledge to the employees….the [organization] has a magazine that they publish. in that magazine there will be this little insert which says that fraud is everyone’s business, which is real nice. and at the back they will show the penalties levied against employers [for unsafe work practices]. but when we [the insurance site program] prosecute someone and get a conviction you will never see that mentioned. when asked what positive impact he believed publishing results could have, i explained, i suppose that the [organization] has a fiduciary responsibility to the employers and to the employees to make certain that any criminal act against the fund is actually pursued. well, we do but they don’t show it. so i think deterrence is a big factor….deterrence has a value because a number of the employees know that if they send concerns forward to be investigated they in fact are. and that things are taken seriously and we will pursue them. right now they don’t know that. they see nothing in the way of information coming from head office that head office takes fraud seriously….the employers see nothing in the way of results….they are told yes we do this and all the rest of it, but they never see anything in the way of concrete results coming forth and in the form of prosecutions and stuff like that. the general public same thing. they seem to think that you know the [organization] is a gravy train and no one is ever concerned about fraud….but the thing is we have to be judged that the organization approaches these investigations fairly. and by showing that the courts have acted upon these and then determined that the information provided by the [organization] and of course its investigation was accurate and fair and that they found that yes in fact the [organization] is being correct in pursuing these prosecutions because there are people out there that are taking monies from the fund. i contended that the organization’s magazine did not recognize publicly the “investigative work of the insurance site program, and cost savings that result and serve as deterrence to committing fraud,” and indeed a review of the september-october edition of the magazine confirms this. the content of the magazine explained the value the organization places on publication of penalties that result from investigations they conducted of employers with unsafe work practices. in the latter case, penalties were presumed to contribute positively to the organization’s safety objectives as employers could learn vicariously and be motivated to comply with safety regulations when they observed other employers being penalized for not doing so. i believed publication of outcomes regarding the insurance site services was the most critical evaluation criterion of the program’s worth, and the goal of evaluation should be to share information to further learning among stakeholders. . . . summary of evaluation practices. table summarizes evaluation practiced at the insurance site. the supervisor was available to the investigators for consultation and feedback, and at the end of services the supervisor determined whether time lines have been met, and whether reports had been completed to an acceptable standard. the supervisor maintained records of all referrals and case outcomes, and the accounting department had developed a formula to estimate cost savings resulting from successful investigative work. the insurance site also administered a satisfaction survey to all possible internal referral sources every several years. table evaluation activities at the insurance site criteria data sources use of findings report turnaround time program data base expedited submitting of reports to meet standards service completion supervisor review of report modified services quality of final report supervisor review of report modified report cost savings program data base justified organizational funding of program referral sources satisfaction prospective internal referral sources satisfaction survey modified services . . evaluation practice and organizational learning. according to i and i there was minimal collaboration among insurance site investigators. most collaborative learning was between individual investigators and the program supervisor. i advised that previously, when all investigators had come from canadian policing backgrounds there had been ongoing collaboration and consultation among them. in his opinion the newer recruits did not have the required skill sets or understanding to conduct investigations, whereas investigators with policing backgrounds did. the majority of the senior investigators are quite able to pick up the phone and contact people. what you have here however within this group is a percentage of senior level investigators who know what is going on, how to do things…and which individuals to contact that have the information, the intelligence, or the knowledge to assist them with their problems. some of the newer people don’t have that background. they don’t know the senior officers, and are blissfully ignorant. (i ) opinions of i and i differed regarding the organization’s commitment to formal training and appreciation for learning. i believed that funding for substantial training of a high quality was poorly supported, and that management funded only inexpensive short courses. unfortunately so much of that is budget driven. as a result i see little to no concrete support in that area. we will receive training but usually in areas that really don’t impact all that much on what we do. because the program training we get is based upon cost, so therefore you get what you pay for and we don’t get much… very very poor support in that area. (i ) he explained the complexity of skills for the investigation of fraud. fraud incorporates criminal law, commerce, accounting, auditing, you are dealing with criminology and all the rest of that. i have my professional designation as most of us do as a certified fraud examiner. and that covers those spectrums. but the thing is once you have taken the course, which is roughly a year’s worth of studying, and then you take your exams, the support more or less falls off and you are kind of left to hunt and seek and get what you can and then request coverage as far as payment is concerned and there is very little of that there. he gave an example of a worthwhile forensic course that would have been available to all investigators of the insurance site, offered over days of training, plus access to on line training, books and materials, for a cost of $ , . however, the organization would not approve the funding. instead, the organization expected investigators to find shorter, less expensive courses. i also believed that courses the newer investigators pursued such as interviewing skills, were elementary. in order for courses to qualify for maintenance for the certified fraud examiner designation they did not have to be long, but they had to be relevant, such as social reporting for criminal investigations and intelligence. in contrast, i believed the financial support given for training was sufficient, and which as manager of the program, he approved these for all investigators. training he expected entry level investigators to have was either completion of the investigations and enforcement certificate program offered through the justice institute, or a bachelor degree, demonstrating they have, “…gone through that education process and have that mind set and think in a way that is very different from other people who have not done that.” i believed some of the new investigators were very curious by nature and wanted to learn new things and new ideas, whereas the older investigators nearer to retirement lacked the same interest in learning. both i and i advised the newer recruits were interested in courses on basic skills sets of the job, “interviewing, information gathering, using social media as an investigative tool, different computer systems” (i ). i said he supported these types of shorter courses and workshops that would qualify as maintenance education to meet the required hours per year of developmental training to maintain an investigator designation. as manager, i hosted internal departmental meetings twice per year that included sponsorship for continuing education training modules. a number of our investigators are certified as fraud examiners and to keep your certification you have to have hours of developmental training per year. so when we have a conference call or when we have our meetings i make sure that i bring somebody in that will satisfy that need, including an ethics portion of training. we do a lot of ethics training internally to satisfy that. as far as learning at the level of the entire organization, i perceived a significant lack of cooperation among departments. departments worked in silos and managements’ attempts to break the silos down had failed. he speculated that fraud likely existed in some departments, but the department managers had not wanted the insurance program to investigate. he believed that the new vice-president overseeing the insurance site might become proactive and create opportunities for investigations. i saw this as a lack of support overall for organizational learning. . . . summary of role scores at the insurance site. overall role scores of the two insurance participants reflected their discrepant views of the program. while i believed the program needed to improve on all areas of the role related to learning and learning from evaluation, i believed the program was doing well. . . organizational cultural context. the insurance site was aware of biases within an “insurance claim culture” that existed for many of the referrals to their program, where investigation into disability insurance claimants was requested. . . . insurance system culture. the insurance site was aware that referrals made regarding disability insurance claimants were often predicated on biases that claims adjusters held about claimants they suspected to be dishonest, or on the adjuster’s lack of information. the investigators strived to maintain a neutral and respectful attitude toward the clients in these cases, and strived for objective investigations that achieved clarification. the vast majority of material we receive to investigate … we establish that the person really is being truthful in which case there is no problem. and if there is a question of misunderstanding we will clarify that and give that information to [the referral source]. (i ) “we tend to find that a lot of this is really you know a very small problem which is primarily one of misunderstanding” and in many cases when “dealing with someone you create a bias”. i valued that the objective of investigations was to “protect the integrity of the accident fund”. this objective could result in the appropriate expenditures, or alternatively could have clarified no eligibility for expenditures. there is also investigative work that we do for instance we will go out and do surveillance and the person is very disabled. and we see that as a success, in that there were some questions about the person’s credibility or there was some issue we have been able to resolve. i explained how investigations could resolve claims by obtaining missing information. from my investigation perspective it may be that the claim owner is able to talk to one person or two people…and they may just leave it at that. whereas with us we will go out and we will interview the person …and if they say well there were five other people around we are going to want to talk to the five people as well to determine the veracity of what this person has said. it may lead to either a negative decision or a positive decision for the person, but at the very least you can be assured that now i have six or seven people telling me the same story or i have one person saying this thing and i have six other people telling me something completely different. through their awareness of tendencies for bias within an insurance claim culture, the insurance site attempted to maintain a neutral position and gathered information to remove the biases. . . evidence evaluation was grounded in an insurance paradigm. the insurance site conducted investigations to acquire proof of medical impairment and disability to ensure that provision of funding and services were warranted. the insurance paradigm in general has a “strong moralistic element…where it is necessary to clearly differentiate between ‘honest’ and ‘dishonest’ claimants” (schultz et al., , p. ). however, the insurance site of this study did not share the major tenet of the insurance paradigm that, “claimants who anticipate financial benefits…. are likely to be dishonest about their symptoms” (schultz et al, , p. ). based on i ’s experience in the program for over years he concluded that many referrals for investigation stem from misunderstandings due to lack of accurate information, or biases on the part of the referring claim managers who suspected claimants were being dishonest about their disabilities. the insurance investigation program succeeded in mitigating these biases. i estimated that in over % of cases investigated information provided by the program confirmed medical impairment and disability and concluded that the person being investigated was being compensated appropriately. i and i reported valuing the integrity of their work that culminated in elimination of misunderstandings or biases, and protecting the accident fund to ensure that funds were spent appropriately. formal evaluation at the insurance site was focused on cost savings and timeliness, as well as ensuring reports were completed to standards set by the program supervisor. this attention to cost savings was consistent with the insurance paradigm insofar as the key determinant of the paradigm in general relates to financial concerns and mitigating risks due to secondary gain of clients. the accounting department of the organization had developed a formula to calculate cost savings resulting from cases managed by the insurance site. this calculation compared costs of claims that had accessed the services of the insurance program, to estimated costs that would have been sustained had the program not accessed the services. i described dissonance related to his criticism of the organization’s failure to report cost savings achieved by the insurance site in their publications, as a means of using these evaluation findings. . . discussion. evaluation criteria and standards in place at the insurance site were: timeliness for each type of service to established standards, completion of final reports to acceptable standards established by the program supervisor, cost savings, and satisfaction of potential referring sources. evaluation at the insurance site was organized and consistent. on every case an assessment was conducted as to whether timeliness standards had been met, and on every case the program supervisor reviewed the final report to ensure services were completed to his satisfaction before the case could be closed. an accounting formula was used to assess cost savings of cases handled by the program compared to estimated costs on cases had the service not been accessed. neither i nor i believed the organization fully appreciated accomplishments of the program or the potential value of services the program offered. i saw the failure to publish evaluation outcomes of cost savings as overlooking an opportunity to educate internal and external stakeholders on the program’s worth. i perceived those in power overlooked opportunities to use the program’s services for internal investigations, and attributed this to other departments working in silos and not wanting the insurance site involved. there was a lack of confidence expressed by both i and i regarding the organization’s commitment to openness and learning. the insurance site characterized one aspect of the insurance paradigm as described in the literature, a positivist perspective that objective evidence of impairment and disability is required to verify entitlement to benefits (schultz et al., ). however, the program did not manifest another common aspect of the insurance paradigm described in the literature: that people who anticipate secondary gain are likely to magnify disability. the investigators saw themselves as providers of accurate information to overcome biases and misunderstandings of decision makers within the insurance system, which had resulted from inaccurate or missing information. based on evaluation of their services i estimated that in over % of cases, information they provided verified the clients were truthful about their disabilities. they believed their services introduced integrity within the insurance system regarding appropriate allocation of funds. evaluation at the insurance site focused mainly on providing accurate information on objective evidence of medical disability, cost savings and the impact of their services to overcome bias in the system. they were less but somewhat concerned with understanding the potential influences of context and diversity among stakeholders. . participants’ perceptions of what is most important to evaluate participants were asked what they believed to be the most important criteria for evaluation of disability management programs. table summarizes program objectives and evaluation criteria grouped by paradigm. table program objectives and participant’ suggestions of what is most important to evaluate biomedical labour biopsychosocial insurance main program objectives accurate assessments and useful reports accommodating every employee with suitable and meaningful employment and doing so collaboratively with union and management counselling, referrals, guidance, career exploration, and support during the earliest stages of acute conditions protecting the integrity of the accident fund what are the most important criteria to evaluate? return to work useful reports helping the client recover return to work flexibility of the organization in providing work accommodations early intervention cost savings helping clients manage their disabilities rapport accuracy of information provided for validation of clients disability appropriate allocation of client support from the accident fund . analysis of the role results the readiness for organizational learning and evaluation inventory (role) was completed by all participants of this study prior to their interviews and discussed during each interview. this was meant to stimulate participants’ thinking regarding organizational learning and to elicit participants’ perceptions of strengths or weaknesses of evaluation and learning in their program or organization. role findings for each participant are interpreted by comparing role findings between/among participants from each site and triangulating role findings with interview data. role findings among all nine individual participants are then summarized (see table ). . . biomedical (bm) site role results. the bm site participants reported on the role by referring to their department/unit, which was a small independent program and not situated within a larger organization. the bm site was the only site of the four included in this study primarily evaluated externally. the lowest role scores for both bm participants were in the subcategory ‘rewards and recognition systems and practices’ ( . for bm : . for bm ). the bm site had no formal internal systems in place for recognition of their services, and relied on repeat referrals to indicate their success. ratings on the role category communication of information were similar for both participants ( . for bm : . for bm ). both participants gave low scores on ‘availability’ of information ( . for bm : . for bm ), and high scores on ‘dissemination’ of information ( . for bm : . for bm ). the lower scores given on table individual participants’ responses to readiness for organizational learning and evaluation inventory (role) role dimensions participants bm bm l l l bpsy bpsy i i culture . . . . . . . . . collaboration & problem solving . . . . . . . . . risk taking . . . . . . . . . participatory decision making . . . . . . . . . leadership . . . . . . . . . systems & structures . . . . . . . . . open & accessible work environment . . . . . . . . . rewards & recognition systems & practices . . . . . . . . . relationship of work to organizational goals . . . . . . . . . communication of information . . . . . . . . . availability . . . . . . . . . dissemination . . . . . . . . . teams - - . - - . . . . evaluation . . . . . . . . . note: for the bm site neither participant gave a rating on the role category ‘teams’ as their program was small with only or employees including themselves, a receptionist and on occasion a third practitioner who performed assessments at their site. two of the three labour site participants left the category ‘teams’ blank as well without explanation. ‘availability’ corresponded to participants’ perceptions of a lack of communication between their program and the main referring agency. the higher scores on ‘dissemination’ confirmed interview data that these participants made conscious efforts to work together and share information. the bm participants had low ratings on ‘evaluation’ ( . for bm : . for bm ). scores provided by bm and bm on this category confirmed interview data regarding their perceived lack of meaningful evaluation by the main referring agency. evaluative feedback from the referring agency focused on timeliness of services, number of client satisfaction surveys returned, and a single digit client satisfaction rating. the bm participants believed timeliness standards were important to contribute to the delivery of optimum services to clients; however, they were dissatisfied with the limited overall feedback from the referring agency regarding their services. their preference for evaluation would have included feedback from referring individuals regarding the usefulness of their reports and detailed client satisfaction information regarding their services, so that they could use the information to make improvements. under the role category systems and structures, on subcategory ‘open and accessible work environment’ scores were ( . for bm : . for bm ), and on subcategory ‘relationship of work to organizational goals’ ( . for both). these high ratings coincided with their explanations of strengths in the bm program. both bm participants had described successfully sharing work space and equipment, and collaborating to ensure services provided met their standards. these participants regularly sought each other’s professional opinions on cases they were managing, especially when they encountered problems, finding opportunities to learn from each other. higher role scores on the category culture ( . for bm : . for bm ), and the three subcategories ‘collaboration and problem solving’ ( . for bm : . for bm ), ‘risk taking’ ( . for bm ), and, ‘participatory decision making’ ( . for bm : . for bm ) reflected their reported collaboration. they also gave high ratings on ‘leadership’ ( . for bm : . for bm ). . . labour site role results. two of the three labour site participants (l and l ) referred on the role to their department/unit (disability management program), and the third (l ) referred to the organization within which the department existed. all of l ’s role scores were lower than those of l , and all but two l scores were lower than the scores of l . l and l gave no ratings on the role category teams perhaps due to oversight, as much of their work involved teams. i did not ask about this during the interview as the role was submitted at the beginning of the interview and the scores were not reviewed ahead. all three labour participants` scores were similar on the subcategory ‘open and accessible work environment’ ( . for l : . for both l and l ), the only category where there was high agreement. this was the only category on which l had a score under . and indicated he believed improvement was required. role items under this subcategory refer to organizational influences including: bureaucratic red tape when trying to do something new or different, open workspaces, and having minimal boundaries between departments facilitating working together. these lower scores confirmed the labour participants’ perceptions that their program was required to work within strict organizational structures, including: a collective agreement, formal job descriptions, separately functioning departments, and dealing only with medical or psychological illnesses not labour relations issues. additionally, during interviews all three participants had described the labour program as unique within the organization because it was overseen by a joint labour management committee, and operated differently from other organizational divisions because it served employees of the organization rather than clients of the organization. l (the administrator of the labour program) gave low scores on ‘systems and structures’ ( . ), and its subcategory ‘rewards and recognition systems and practices’ ( . ); as well as on category ‘communication of information’ ( . ), and its subcategory ‘availability’ ( . ). these items relate to feedback given to employees regarding their achievements, and informational feedback regarding departmental or organizational performance, mostly from outside sources. these areas may have been of particular interest to l as the program administrator, giving her a heightened critical awareness of any shortcomings. the low score that l gave on communication of information, subcategory ‘availability’ ( . ) contrasted with the higher scores given by l ( . ) and l ( . ). this was the lowest score that l gave, whereas it was the only score above . for l and was one of the three highest ratings given by l . higher scores indicated this was an area on which the program (in the case of l ) and the organization (in the case of l ) were considered to be functioning well. the low score given by l reflected her perception that information available did not meet what was required, perhaps in relation to her unique duties as an administrator. for example, as part of her administrative responsibilities l had described working with the organization’s human resources department to develop a data management system that could in the future be used for evaluation organization wide. high scores were given by l and l in areas related to a culture of learning, participatory decision making, leadership and goal setting within their department (ranging . - . for l : . - . for l ). items under ‘collaboration and problem solving’ reflect respect, cooperation, collaboration, constructive problem solving, and willingness to learn and improve practices toward shared success among professionals. items under ‘participatory decision making’ reflect employee-managerial openness and cooperation in sharing information to facilitate learning and decision making. ‘relationship of work to organizational goals’ reflects how well program goals align with organization goals. interviews with l and l confirmed these high role scores. these two participants perceived their program to have open and cooperative communication systems that were inclusive, encouraged feedback from stakeholders within and outside of the program, and integrated labour and management perspectives. l believed their program was a model for other organizations. l ’s scores on the role were almost all high, including all six main categories, and seven of the eight subcategories. l , the administrator of the program, was more discriminating on the role, scoring high on three of the six main role categories, and five of the eight subcategories. her scores were higher on role areas related to culture, leadership, relationship of work to goals, dissemination of information and evaluation, and lower in areas related to systems and structures and availability of information. the scores of l (who referred to the organization not the program on the role) were almost all low, with eleven out of scores under . . l had been a former labour organizer within the organization, and during her interview reported bringing a unique labour perspective to the program, including knowledge of the collective agreement and the organization. while identifying strongly with labour, during her interview l expressed commitment to the joint labour-management administration of the program, and impartiality in serving labour and management stakeholders, and had been constructively critical of organizational constraints impacting the program. the lowest role score given by l was on category evaluation ( . ). as l was referring to the organization not the program, her low score reflected a perceived need for improved evaluation and learning from evaluation on an organizational level. in contrast, l and l rated evaluation high ( . and . respectively). during interviews l and l both described having participated in the development of evaluation systems for the labour program, and having benefitted from the use of evaluation findings, whereas l did not report having had similar experiences. l ’s and l ’s prior involvement in evaluation activities may have contributed to a greater awareness of and appreciation for the role of evaluation in their program. the only two l scores not below . were under culture, for ‘participatory decision making’ ( . ); and communication of information, for ‘availability’ ( . ). role items in these categories refer to employees and managers openly sharing information to make informed decisions, and availability of information on performance from multiple sources. these higher role scores reflected areas l saw as strengths within the organization. l ’s lower scores were consistent with her attempts to provide constructive criticism. she identified ways she believed the labour site program and organization were succeeding and ways they were struggling, and suggested areas she believed were in particular need of improvements. for example, l described her perceived lack of organizational commitment to disability management because of a lack of funding to train returning work clients how to use the new computer system, which was a critical job demand. her pattern of lower role scores reflected her criticism of the organization and perception that improvements were needed in culture, leadership, systems, and dissemination of information to support learning and evaluation. . . biopsychosocial (bpsy) site role results. both bpsy participants referred to their organization not the program when completing the role. they explained during interviews how all programs within the organization, including the bpsy program, were integral to multi-disciplinary and inter-disciplinary services available simultaneously to clients. both bpsy participants gave high ratings on evaluation ( . for bpsy : . for bpsy ). although both confirmed during interviews there was no formal program evaluation within the organization, the role items in this category refer not only to evaluation that is in place, but how evaluation could lead to improvements if it were in place. these higher scores were indicative of the bpsy participants’ awareness of ways evaluation could benefit the organization. these participants gave the lowest scores (all under . ) on communication of information ( . for bpsy : . for bpsy ), and its two subcategories ‘availability’ ( . for bpsy : . for bpsy ) and ‘dissemination’ ( . for bpsy : . for bpsy ). items refer to the availability of feedback from multiple sources regarding effectiveness of services, an area these participants believed needed improvement. the low scores given on communication of information confirmed bpsy ’s perception that there were no organization wide systems of data collection on program services and no formal evaluation of programs. she thought it likely that some of the programs maintained their own data systems or evaluated their program outcomes, but this information was not shared organization wide. as administrator of the bpsy program, bpsy maintained a data base of information on services provided to clients, and planned to code the data such as “return to work” or “went to school to retrain”, to include in her annual reports. she believed the organization would support the staff if they chose to conduct research or evaluation on their own programs, something bpsy hoped to eventually do. the other low role score was bpsy ’s score ( . ) on ‘rewards and recognition systems and practices’. bpsy , the administrator of the program, rated this higher ( . ). this subcategory refers to organizational recognition given to employee innovation or team learning. bpsy ’s experiences as administrator may have provided her opportunities for greater awareness of recognition that staff or programs within the organization were receiving. during her interview she had stated that some programs were considered more essential than others. the other role scores were above . and confirmed interview data regarding the organization’s strong value of a learning culture, collaborative leadership, and a participatory system of teams. the organization so valued their multi-disciplinary services, that when faced with health budget cuts they had reduced management within the organization down to two or three individuals in order to maintain program services. . . insurance site role results. the insurance site participants referred to their department/unit when completing the role. their department was in a large organization that managed insurance claims within one of its divisions. none of the fourteen role category/subcategory scores of the two insurance site participants overlapped. communication of information, subcategory ‘availability’ of information ( . for i : . for i ) was the only area of agreement between i and i . both scores were below . , indicating this was an area both i and i believed needed improvement. during his interview, i criticized the organization for not publishing information on the cost saving of the insurance program, similar to the way the organization published the accomplishments of other departments. he believed this represented an absence of organizational insight into the possible benefits of public knowledge of the program’s outcomes. additionally, i questioned whether the organization appreciated the social and economic accomplishments of the insurance program. i , however, was critical of the lack of information sharing at an organizational level. he believed directors were not communicating with each other, resulting in departments working in isolation. on all other areas of the role these two participants’ scores contradicted each other, which was consistent with their discrepant views during interviews. on leadership i gave one of his lowest scores ( . ) and i gave his highest score ( . ). these discrepant scores reflected differences they expressed regarding program management. both insurance participants described a top down management for the insurance program and organization. i was responsible for making administrative decisions within the program such as approving training costs. organizational directors made higher level decisions that impacted the program from outside. the investigators’ contributions were mainly limited to case work, report writing and communicating with other professionals who worked in the claims department. both i and i had expressed concern about the hierarchical decision making processes within the organization, and the failure to take advantage of opportunities to learn at an organizational level. during interviews the two participants expressed different views on managers’ decisions related to selection of new investigators and approval of ongoing education for investigators. i valued decades of prior policing work experience, whereas i valued prior high level academic achievement. i and i also disagreed on what continuing education was most useful to program investigators. i valued contracting with experts to train groups of staff on advanced methods in the field, and i (who as administrator of the program approved all training costs) supported basic courses such as interviewing skills to be taken by individuals (interviewing was a skill i believed was critical and should have been mastered prior to becoming an investigator within the program). scores of the two insurance site participants were also discrepant on systems and structures ( . for i : . for i ), and its subcategories ‘open and accessible work environment ( . for i : . for i ), ‘rewards and recognition systems and practices’ ( . for i : . for i ), and ‘relationship of work to organizational goals ( . for i : . for i ). these items describe open work spaces where employees are able to share information, where employees and the program work toward mutual goals, and where recognition is given to employees for contributions they make in meeting common goals. the lowest score given on the role by i was under systems and structures, on subcategory ‘rewards and recognition systems and practices’ ( . ). during his interview i criticized the program for not engaging investigators in team work, and criticized the organization for not demonstrating appreciation of innovative work accomplished by the insurance program. participants’ scores were also discrepant but somewhat closer on culture ( . for i : . for i ), and its subcategories ‘collaboration and problem solving’ ( . for i : . for i ), ‘risk taking’ ( . for i : . for i ) and ‘participatory decision making’ ( . for i : . for i ). these items refer to ways a program encourages employee inclusiveness, their sharing of information and ideas, taking risks to be innovative, leading processes of change, feeling no fear of making mistakes, and the degree to which an organization views the capacity of all employees to learn, as the organization’s greatest resource. the lower scores of i reflected his perspective that the program was not conducive to employee inclusiveness. i ’s higher scores indicated he viewed these areas as satisfactory or strengths of the program. during interviews and on the role, i was critical of the insurance program’s administration and believed investigators’ opinions were ignored. i ’s scores were below . on only two of the fourteen role category/subcategories, and above . on the other twelve. these two areas i believed needed improvement were communication of information, subcategory ‘availability’ ( . ) and culture, subcategory ‘risk taking’ ( . ). during interviews i was critical of a lack of communication and planning between program personnel and organizational directors outside the program. i believed due to territorial attitudes and poor collaboration among directors of the organization, departments were isolated and impenetrable, and he suspected possible corruption may be going undetected as directors protected their departments from scrutiny. i ’s overall low role scores (below . on all fourteen role categories/subcategories) reflected his criticism mainly directed at administration of the insurance program and of the organization. i ’s highest scores related to information sharing: culture, subcategory ‘collaboration and problem solving ( . ), communication of information ( . ), and subcategory ‘availability’ of information ( . ). during the interview, i had identified the individual work accomplished by investigators that resulted in learning opportunities for claims staff as a strength of the program. for example, he perceived contributed objective information on client functioning that resulted in referring persons making decisions with reduced bias. i ’s scores were above . on twelve categories/subcategories. the twelve higher scores reflected his perspective as administrator that the insurance program was operating successfully in relation to learning and learning from evaluation. i rated the following categories . or higher: culture, subcategory ‘participatory decision making’; systems and structures, subcategories ‘open and accessible work environment’ and ‘rewards and recognition systems’, and leadership, teams and evaluation. out of six main role categories, i gave his lowest scores on leadership ( . ), systems and structures ( . ) and teams ( . ). i gave somewhat higher scores on the other three: culture ( . ), evaluation ( . ) and communication of information ( . ). the lowest score that i gave was on communication of information ( . ) and his other five scores were even higher: culture ( . ), systems and structures ( . ), evaluation ( . ), teams ( . ) and leadership ( . ). . . summary of role results. six participants referred to their program when completing the role (bm , bm , l , l , i and i ) and three referred to the organization within which their program was situated (l , bpsy and bpsy ). participants who referred to their organization had significant previous work experience at an organizational level, whereas those referring to the program had greater prior work experience at the program level. the program and organizational perspectives contributed to the identification of what was or was not being done at organizational levels to develop learning and learning from evaluation, and what impacts organizations had at the program level. i scored under . on all categories/subcategories of the role, and l scored under . on all but categories. the role category/subcategory scores of other participants were reasonably high, indicating that conditions for organizational learning and learning from evaluation were in place, particularly at a program level. across all nine participants, three role categories/subcategories were rated lowest (under . by more than half the participants), indicating areas that required improvement in relation to organizational learning and learning from evaluation: communication of information ( / participants), communication of information subcategory ‘availability’ ( / participants), and systems and structures subcategory ‘rewards and recognition systems and practices’ ( / participants). specific items in these three areas identified as needing improvement were: ) a lack of information from stakeholders that could inform programs about their effectiveness, and ) not encouraging employees to share information and create opportunities to learn. across all participants, five role categories/subcategories were rated highest ( . or over by more than half of the participants), indicating areas of strength that could be leveraged in building organizational learning and learning from evaluation. these were: culture ( / participants), and culture’s subcategories ‘participatory decision making’ ( / participants) and ‘collaboration and problem solving’ ( / participants), leadership ( / participants), and systems and structures, subcategory ‘relationship of work to organizational goals’ ( / participants). these items referred to having a culture of respect, inclusiveness, collaborative problem solving and decision making, shared rewards, openness to employees questioning and making innovative contributions, and overall, organizations having the highest regard for employees working together toward common goals. chapter : discussion . introduction systematic judgment of the quality of a grounded theory study includes explicit identification of how the study has met the canons and procedures of this methodology. the usual scientific canons including significance, generalizability, reproducibility and verification are redefined for grounded theory, and their positivistic connotations guarded against (corbin and strauss, ). it is the grounded theorist’s responsibility to identify relevant conditions, and determine how individuals are responding to those conditions and the consequences of their actions. grounded theory is not about accuracy of descriptive units of data but is about conceptual abstraction, explaining patterns of behavior or issues in context (holton, ). “the procedures of grounded theory are designed to develop a well integrated set of concepts that provide a thorough theoretical explanation of social phenomena under study. a grounded theory should explain as well as describe. it may also implicitly give some degree of predictability, but only with regard to specific conditions” (corbin and strauss, , p. ). grounded theory begins with open coding to compare and group data and to stimulate analytic questions. this is followed by conceptual coding, a more abstract analysis and development of hypotheses that can be tested in relation to new data and to identify themes, develop context, and explain processes or changes over time (corbin and strauss, ). concepts, as the basic unit of data analysis in grounded theory, “earn their way into the theory by repeatedly being present…or significantly absent” (corbin and strauss, , p. ). the researcher groups conceptual themes into more abstract themes in terms of their properties and dimensions, explaining the conditions under which they arise, actions or interactions that have occurred in response to conditions, and consequences produced. during analysis a core conceptual category often emerges that is central to the grounded theory, around which the other categories can be related to explain variation in the conditions, actions and consequences (corbin and strauss, ). writing theoretical memos including illustrations from the start to the end of the study maintains records, makes hypotheses, generates questions that evolve through analytic processes, and preserves conceptual detail (corbin and strauss, ). analysis of processes must be built into a grounded theory (corbin and strauss, ) and can be achieved through different means, such as breaking a phenomenon down into stages, phases or steps, or, identifying a purposeful action/interaction that changed with different responses to conditions. broader conditions that may affect the phenomenon, such as economic conditions, cultural values, political trends or social movements, must be analyzed and brought into the grounded theory to show “specific linkages between conditions, actions, and consequences” (p. ). bacharach ( ) suggested a testable theory should state how it is bound in time (applicable at different times or not) and bound in space (applicable within different types of organizations or not). testing hypotheses within a grounded theory one presumes that exact conditions cannot be replicated. the more abstract the concepts and theory, the more variation that is uncovered, and the wider the theory’s applicability (corbin and strauss, ), but at the cost of detail (bacharach, ). a summary of grounded theory analyses followed in this study is included in appendix c. the following discussion of the findings of this study follows the key steps of grounded theory as summarized by harry, sturges, and klinger ( ). table summarizes the progression of analyses for this study. table data analysis map . open coding open codes see appendix c . conceptual coding conceptual codes  accurate information, adaptation, bias, client satisfaction, collaboration, communication, culture, diversity, feedback, formal evaluation criteria, funding, goals, integrity (in vivo code), learning, meaningful evaluation, performance based model, qualifications, rapport, reports, self evaluation, standards, stigmas. . developing themes themes from original conceptual codes  adaptation, bias, client satisfaction, collaboration, communication, culture, diversity, evaluation criteria, feedback, learning, reports. themes elevated from open codes  cost savings, timeliness themes elevated from interview data  client functioning, data management, return to work. . testing the themes conceptual themes  collaboration, communication, culture, diversity, bias.  adaptation.  evaluation criteria: client functioning, client satisfaction, cost savings, return to work, timeliness.  data management.  feedback, reports.  learning. . inter-relating explanation inter-relating themes and their abstract relationships explaining disability management evaluation multiple sources of disability management evaluation that reflect diverse stakeholder perspectives and values coexist.  evaluation that does not integrate internal and external stakeholder perspectives risks a potential loss of important information and evaluation that produces narrow insights. the integration of internal and external stakeholder perspectives is accomplished by: collaboration, communication, and sensitivity to culture, diversity and bias.  disability management programs are required to adapt to influences from their broader context. adaptation is not necessarily positive for the program or additive for the clients, but can be necessary for program survival.  the primary disability management evaluation criteria are: client functioning, client satisfaction, cost savings, return to work and timeliness. these criteria are not used uniformly among disability management programs.  programs and organizations are developing data management systems with increasing use of technology to be used in evaluation and performance management.  feedback and reporting of evaluation findings contribute to learning for stakeholders, programs and organizations.  evaluation of disability management follows a consumer working logic. evaluation is primarily concerned with use of findings, and secondarily concerned with pluralistic values of multiple stakeholders. . theory development evaluation that is meaningful requires insight into how impairment environment interactions are being managed by the program. the presence or absence of collaboration among stakeholders has the potential to contribute significantly to an explanation of variability in disability management and disability management evaluation. disability management programs that highly value opportunities to learn and to learn from evaluation encourage collaboration and communication among stakeholders during program services and evaluation. understanding how disability management programs are adapting to influences from their broader contexts has the potential to contribute significantly to an explanation of variability in disability management and disability management evaluation. disability management programs that are concerned with understanding contextual influences and integrating multiple stakeholders’ interests can leverage new insights to reach their goals. there are currently five primary disability management criteria: return to work, cost savings, timeliness of services, client satisfaction, and client functioning. these criteria are not used uniformly among disability management programs. disability management programs and their funding organizations are increasingly using technology to develop new data management systems for use in evaluation. . purpose and logic of disability management evaluation disability management evaluation is primarily concerned with christie & alkin’s “use” branch of evaluation assuming a social accountability orientation for program improvement, and is secondarily concerned with multiple stakeholders’ values. consistent with the emphasis on “use”, disability management evaluation primarily adopts a consumer oriented working logic, while some programs also incorporate the logic of connoisseurship and pluralistic evaluation approaches. note: the order that grounded theory data was managed moved through the levels from to . christie & alkin, . . open coding . . line by line coding. a total of open codes were generated from the nine interviews (see appendix d for a list of the open codes.) these codes were generated using nvivo software to code the nine interview transcripts line by line. an example of open coding of interview data is illustrated in the following example. the open code “participants’ evaluations of their program services” was based on excerpts from multiple interviews where participants explained their prior evaluation of their disability management services, including the following excerpts taken from the interview with bm . bm : you should have ways to know that what you do is effective and also to improve your ability where you are learning or your effectiveness on an ongoing basis. so whether i am an ot here or an ot within a bigger organization it would still be my duty to ensure that what i do is effective. my services are effective in some way or even questioning myself as to what would i judge to be effectiveness in terms of the services i provide. researcher: you said that you’re aware of the fact that you should always be evaluating your own services. in what way have you evaluated yourself? bm : we used to have our own satisfaction questionnaire before [the referring agency] came up with their own…it was for the worker to assess our service. in terms of whether they had been treated in a respectful manner, whether they had learned something during the evaluation that i provided, or through the service that i provided. so there was a series of questions… maybe some of them were not as good as others or not as objective as others, but then once the contracts started being awarded for services [the referring agency] came up with their own satisfaction questionnaire and they were quite a bit different from the one that we used to give to clients. nevertheless this is now the main source of information that i have to know if my services are effective. another example of the code “participants’ evaluations of their program services” is from a document bm prepared in advance of our interview. under a heading “my criteria for success” bm listed four criteria she used to evaluate functional capacity evaluations (fces), one type of services provided by the bm site. these were: satisfaction questionnaire; debriefing sessions with clients; repeat referrals from referral source; and review of my fce report – have i clearly answered all questions and provided evidence?” open coding included reading and coding each interview transcript individually. as new transcripts were coded, data from previously coded transcripts was reread to confirm whether any of the newer codes had been overlooked or labelled differently during original open coding, with the objective of attributing reliable meanings to the open code labels. one of the outcomes of conducting the interviews myself, then transcribing and open coding every individual transcript and document, was that i gained an overall awareness of what information was included in the data. . . transition from open codes to conceptual coding. . . . visual display of open codes. in grounded theory the researcher uses memoing and diagramming to examine, analyze and think about data in complex ways, by sorting, analyzing and coding. “when memoing a topic analytically, the researcher generates a set of categories, contrasts, comparisons, questions, and avenues for further consideration which are more abstract than the original topic” (lempert, , p. ). after open coding was completed the open codes that had been generated were each printed on separate slips of paper, and they were organized to create a visual chart ( x inches) grouping and ordering codes based on commonalities. groupings of open codes included: descriptions of disability management programs; the role; organizational cultural issues; paradigmatic approaches; and external evaluation of the biomedical site (refer to appendix e for examples of groupings from the chart). this visual display contributed greater clarification of open codes that had been created. the visual display of grouping open codes together provided an elementary analysis of how the open codes related to each other. some groups of codes were straightforward and descriptive, for example describing clients or disability management practices at the sites of this study. other groups of codes led me to undertake initial levels of more abstract analysis, as i perceived some individual open codes and groups of open codes were foundational to more abstract understandings requiring further analysis. . . . concrete versus abstract. one of the first analytical realizations i had was to differentiate data that was descriptive or concrete, from data that was abstract to varying degrees. a definition of concrete includes “specific, definite; denoting a material object as opposed to an abstract quality, state or action” (barber, , p. ), and the definition of abstract includes “to do with existing in thought rather than matter, or in theory rather that in practice, not tangible or concrete (p. ). examples of concrete were open codes timeliness and cost effectiveness, both measurable evaluation criteria. examples of open codes i initially identified as more abstract were: integrity (in vivo code), communication with external stakeholders; referring organization communication with participant program; and multi-disciplinary cross pollination. these open codes were identified as more abstract as they involved a higher level of analysis than linear measurement of outcomes, and had the potential to contribute to a thicker explanation of disability management evaluation at the sites. when new open codes were identified, i returned to previously coded transcripts to compare data to data, data to codes, and codes to codes. an example was the open code integrity (in vivo code), referring to appropriate allocating of funds, a term originally used by a participant from the insurance site in one of the final two interviews conducted and transcripts coded. i gave reasoned consideration as to whether the code integrity would apply to statements made by bm a participant from the biomedical site, who had referred to biases in the reports of other organizations, during the second interview i conducted and transcript i coded. coding of integrity included obtaining a dictionary meaning (barber, ), and hypothesizing the reference to integrity at the insurance and biomedical sites were both positivist referring to seeking one truth, fairness and ethics. initial awareness of the potential for more abstract interpretations of data gained from open code analysis was carried on to the next phase of analysis, conceptual coding of raw data. i anticipated there was potential to examine some open codes further at higher levels of abstraction, as they could reasonably be elevated to conceptual codes, for example open codes integrity or bias. furthermore, given evidence identified during open code analyses that conceptual findings did exist within the data that could lead to more meaningful explanations than descriptions, i commenced conceptual coding with an expectation that this higher level of abstract analysis would lead me to the discovery of additional new concepts. . defining conceptual codes the original interview transcripts were coded again one at a time on a more abstract level using nvivo software. this involved reading each transcript line by line and attaching conceptual codes to relevant sections of the transcripts. twenty-two conceptual codes were generated. accurate information, adapting, bias, client satisfaction, collaboration, communication, culture, diversity, feedback, formal evaluation, funding, goals, integrity (in vivo code), learning, meaningful evaluation, performance based model, qualifications, rapport, reports, self evaluation, standards, stigmas. nvivo files facilitate access to all excerpts for each conceptual code, so that original data sources were easily located in the transcripts. following bringer, et al’s. ( ) recommendation to “search previously coded documents for instances of a newly developed category” (p. ) i returned to the original raw data using constant comparisons rereading each interview transcript repeatedly until i perceived all excerpts representing each conceptual code had been identified, and the code files were saturated. this analysis involved iterative processes where i returned to the nvivo files of excerpts from transcripts pertaining to each of the conceptual codes, comparing conceptual codes to each other and to the original interview transcripts and documents. i entered some memos into conceptual nvivo files describing my reactions to codes. paper and electronic documents were also coded a second time conceptually. the documents were coded by hand without nvivo. given there were so few documents and little information on them to code, computerization that would have been necessary to manage large amounts of document data was not required to assimilate document excerpts into the computer files on transcript conceptual codes. . . grouping open codes into conceptual categories. grounded theory methods include comparing data to data, data to codes, codes to codes, and codes to concepts. i categorized each of the open codes under one or more of the conceptual codes. open codes were grouped together when i identified commonalities among them that related to the conceptual code under which they were grouped. table summarizes the conceptually categorized open codes. table conceptual categories and open codes accurate information: client credibility, consultants to program, contributing new evidence, fraud example, integrity (in vivo code), non validity, surveillance, validity. adaptation: political limited funding, referring organization communication with participant program. bias: bias overcome, impartiality. client satisfaction: client summative evaluation of program (survey), survey evaluation. collaboration: employer input, labour joint union management, multi-disciplinary cross-pollination, multi-disciplinary early intervention. communication: communications with external stakeholders, problem solving, reporting evaluation findings, sharing personal beliefs. culture: claims managers high stress, cultural issues, labour relations roles and issues, labour site limited information on client disabilities, problem with increased temporary workers, psychological disability. diversity: disabled dm counsellors, gender, stigmas. formal evaluation: cost effectiveness of program, evaluation needs assessment, referring organization criterion for program services, referring organization formative evaluation of program, referring organization summative evaluation of program. goals: participants suggested dm evaluation criterion, setting specific behavioural objectives, timelines of dm for services programs provide. learning: learning, participant learning from client feedback surveys, participant training through nidmar return to work coordinator, role, role open and accessible work environment, role area needing improvement, role collaboration and problem solving, role decision making, role strengths from organizational learning. meaningful evaluation: referring organization communication with participant program, performance based evaluation. qualifications: participant qualifications, participant program evaluation background. reports: reporting evaluation findings, weekly statistical summary of services provided. self evaluation: introspection, social learning copying standards of others (for reports), validity. descriptions of dm sites: biomedical dm site, biopsychosocial dm site, define disability for this organization, definition of clients for the organization, definition of services provide by this program, insurance model site, labour site joint union management, labour model site, non dm services of program, participant description of program, participant role in organization, preventative aspect of dm program, program clients, program situation within organization, referring sources. evaluation at the sites: how participant knows program is doing what was intended, participant evaluation of their program services, participant formative evaluation of their program services, participant summative evaluation of their program services, who is responsible for evaluating program. data management technology: participant opinion new computer system interferes, people soft dm record keeping software, technology. some of the original conceptual codes were joined (condensed) as commonalities became clear, and new codes were developed as distinctions among data became clear. an example of condensing in this study was when two open codes (setting specific behavioural objectives, timelines for providing disability management services) were originally categorized as “standards”, and then were combined with the open code (participants suggested dm evaluation criterion) under conceptual code “goals”. an example of creating a new conceptual code was “data management” under which several open codes were grouped (participant opinion new computer system interferes, peoplesoft dm record keeping software, technology). figure illustrates these examples of condensing and adding conceptual codes. . developing themes . . selecting conceptual codes relevant to emerging themes. conceptual codes were further analyzed in relation to each other, to open codes, to the data and to the original research questions of this study through constant comparisons. this analysis revealed ways that concepts related to each other, and ways that concepts grouped together into more abstract themes. this process also resulted in understanding of how some concepts were more important than others in their significance to the data and to meanings participants had been conveying. themes that began to develop during this stage of analysis included: disability management evaluation criteria, the significance of collaborative communications, recognition of diversity, learning from evaluation, program adaptation to contextual influences, and the role of data management systems. figure condensing and adding conceptual codes ________________________________________________________________________ as conceptual categories were being analyzed, of the original conceptual codes were significant to the emerging themes, and the rest were dropped as they were not considered as important. the robust conceptual codes were: adaptation, bias, client satisfaction, collaboration, communication, culture, diversity, evaluation criteria, feedback, learning, reports. two open codes were elevated to conceptual codes as their importance to the emerging theme of “evaluation criteria” became evident through constant comparisons of the data. open code “cost effectiveness of program” was elevated to conceptual code “cost savings”, and open code “timeliness of disability management for services programs provide” was elevated to conceptual code “timeliness”. the importance of these ___________________________________________________________________________ standards: setting specific behavioural objective, timelines for providing disability management services. goals: participants suggested dm evaluation criterion. goals: participants suggested dm evaluation criterion, setting specific behavioural objective, timeliness for providing disability management services. condensing data management: participant opinion new computer system interferes, peoplesoft dm record keeping software, technology. creating a new conceptual code open codes:  participant opinion new computer system interferes  peoplesoft dm record keeping software  technology conceptual codes to disability management evaluation at the sites became evident through data analysis, and cost savings had also been a primary evaluation criteria in the disability management evaluation literature. the two elevated codes were: cost savings, timeliness. three new conceptual codes were elevated from the original interview data as their importance to the emerging themes became evident during constant comparisons of data. these concepts had been significant at the sites of this study, and within the disability management literature, but had initially been underemphasized during open coding and conceptual coding of data. the three elevated codes were: client functioning, data management, return to work. the new conceptual code “client functioning” was created to reflect a characteristic of the emerging theme “evaluation criteria”. during interviews participants described how disability management programs monitored individual client functioning under varying conditions. to define the new conceptual code “client functioning” i utilized the disability literature. the world health organization developed an international system to classify functioning, disability and health (icf), a conceptual framework intended to describe and understand the components of functioning, disability and health (escorpizo et al., ). [the icf system] includes body structure and body functions at the body level, and activities and participation at the community/society level. functioning and disability as embodied in the icf also consider the influence of contextual factors such as those related to the person and those related to the environment, on functioning. therefore functioning is a result of the interplay between and among these components” (p. ). the components of functioning and disability in the system can be expressed in two ways: ( ) problems or disabilities (impairments, activity limitations or participation restrictions); and, ( ) non-problematic (neutral) aspects of health and functioning, where “a person’s functioning and disability is conceived as a dynamic interaction between health conditions (diseases, disorders, injuries, traumas, etc.) and contextual factors” (icf, , p. ). the icf classification system considered functional and environmental interactions, a view of disability management that involved more than biology, requiring the consideration of contextualization (smart & smart, ; loisel, et al., ). . . summary of conceptual codes relevant to emerging themes. sixteen conceptual codes that originated from the data and those most relevant to explain the emerging themes were retained for the next phase of analysis, testing the themes. adaptation, bias, client functioning, client satisfaction, collaboration, communication, cost savings, culture, data management, diversity, evaluation criteria, feedback, learning, reports, return to work, timeliness. . testing the themes . . reflexivity. analysis involves inductive moving from data to explanations of the data; however, researcher interpretations are also involved. as a researcher i have pre-conceived understandings based on over years experience in the field of disability management that i bring into data analyses. “researcher reflexivity works hand-in-hand with the iterative nature of the research to bring preconceived beliefs into the dialogue, rather than seeking to omit or ignore them” (harry, et al., , p. ). in contrast to trying to control researcher bias as though it would confound the data analyses, i have attempted to recognize how my understandings of the themes may contribute during data analyses. for example, i had been aware of characteristics of paradigms within services at the various sites. during analysis of data i was aware of missing codes important to themes and returned to the interview transcripts and the literature to identify them. . . categorizing the themes. in grounded theory the researcher “treats the various code clusters in a selective fashion, deciding how they relate to each other and what stories they tell” (harry, et al., , p. ). . . . themes. the themes that emerged were based on grouping conceptual codes into the five following categories. . five themes were grouped as they represented common disability management program evaluation criteria evident in the data of this study, and confirmed as primary criteria in the disability management literature. they were: client functioning, client satisfaction, cost savings, return to work, and timeliness. . five themes were grouped as they reflect the importance of program context and interactions within programmatic contexts. they were: collaboration, communication, and sensitivity to culture, diversity, and bias. . two themes were grouped as their common purpose was to contribute to learning from evaluation at individual, program and organizational levels and labeled feedback and reporting. . data management was a theme. participants described how programs or their organizations were in the process of developing data management systems with increasing use of technology for evaluation and/or performance management. . adaptation was a theme regarding broad contextual influences on the programs, variations in how programs responded to those influences, and the consequences of their responses. . differentiating evaluation in the four paradigms table is a visual display of conceptual codes and themes, to assist with differentiation of evaluation at the four sites. the table summarizes the concepts present at each site and within each of the paradigmatic approaches, and whether their presence or absence was perceived as constructive or as contributing to dissonance. table conceptual themes evident at the paradigmatic sites bm labour bpsy insurance program evaluation criteria client functioning: physical cognitive environmental participation + + + + + + + + client satisfaction - + + cost savings + + return to work - + timeliness + + + + program context interactions collaboration - + + - communication - + + + culture - + + diversity + + bias - + + + learning + + + + feedback and reporting - + + data management systems + + + + adaptation - + + - note: (+) denotes some constructive dynamic regarding the theme, (-) denotes some dissonance regarding the theme (due to its presence or absence), and (blank) denotes no conceptual focus noted, in relation to evaluation at the site. . . conceptual themes at the paradigmatic sites. the insurance and bm paradigms share the assumptions that physical impairments can be objectively measured and symptoms are directly proportionate to pathology. these sites were concerned with clients’ physical impairments: the bm site measured physical capacities, whereas the insurance site investigated consistency in symptoms they considered to be valid evidence of impairment. evaluation at these two sites involved measurable program outcomes. at the insurance site, evaluation criteria were cost savings and timeliness of services, quality of reports and satisfaction of prospective referring individuals. at the bm site, evaluation conducted by the referring agency measured timeliness of services, client satisfaction ratings and number of completed client satisfaction surveys returned, and evaluation conducted by the bm staff measured accuracy of equipment and job demands analyses, client satisfaction and quality of reports. there was no evidence of these sites incorporating collaboration, or concern with culture and diversity into evaluation. they were concerned with evaluating their programs from the view of the evaluator, and, the insurance site also evaluated referring sources satisfaction. bm site participants reported experiencing dissonance in relation to the lack of collaboration and communication with the main referring agency that evaluated their program. they did not believe criteria evaluated by the referring agency represented what was most important to them or to the clients. the bm site also perceived biases that some clients held against them due to an insurance culture influence had the potential to negatively influence evaluation findings. the insurance site valued communication with their referring sources, as they believed that in providing accurate information to them, biases that otherwise existed due to incorrect or incomplete information were reduced. the insurance and bm sites both reported dissonance in relation to contextual influences they faced, the insurance site mainly due to organizational politics from outside their program, and the bm site due to being unable to interact as they would have preferred with the referring agency. the labour and bpsy sites both focused more in their services on interactions between clients’ impairments and their contexts, and the multiple stakeholder perspectives that this incorporated. the labour site focused on multi-stakeholder perspectives encountered at the work place and the bpsy focuses on an interdisciplinary whole person approach for clients within their organization. both of these approaches took into consideration multiple stakeholder perspectives, and client functioning in context with the client’s particular environment, including physical, cognitive, social, political, and economic. evaluation at the labour and bpsy sites was concerned with physical, cognitive and environmental participation criteria. both were concerned with timeliness of services being available continuously as needed. both services involved collaboration and communication among stakeholders. both programs reported positive adaptation to contextual influences on their programs. neither of these sites reported dissonance from any source outside their program, within or from outside the organization. evaluation at the bpsy site was informal, but the program was starting to develop data management systems to eventually use in evaluation. the labour site had well developed evaluation in place including criteria client satisfaction and return to work, and were in the process of developing a data management system to evaluate cost savings. all four sites evaluated program outcomes. the insurance and bm sites that were predominantly concerned with use of program services focused mainly on evaluation of services related to the individual. the labour and bpsy sites that were concerned with services as they related to the individuals’ interactions with their contexts incorporated the valuing of multiple stakeholders’ perspectives into services and evaluation. the evaluation literature consistently stresses the vital importance of attending to context in evaluation (alkin, ; chelimsky, ; rog, ). the importance of evaluation goals varies among different stakeholders including those from within and outside the program, impacting also the use of findings. programs often overlap with other programs with important consequences, for example, sharing staff. program intensions may differ from program realities. all programs have political contexts that impact them, both positively and negatively, and must be recognized by evaluators. the analysis of conceptual themes present at the sites of this study emphasizes the importance of these kinds of program context interactions to evaluation of disability management. . inter-relating explanations of evaluation . . introduction. at the point of conducting interrelating explanations i was reminded of the literature describing this process. in their study harry, et al., ( ) reported their analysis had been firmly grounded in extensive, triangulated data that they referred to as “explanations” of their topic. continuing the constant comparative analyses, they called the process “inter-relating the explanations” (p. ) as they sought clarification among the explanations. they noted they were unable to diagram this process in two dimensions due to its complexity, and reported analysis had involved going back and forth, between and among explanations. one finding they identified was that no single explanation could stand alone to measure complex social processes. corbin and strauss ( ) found that during grounded theory analysis a core conceptual category often emerged around which other categories could be related to explain variation in conditions, actions and consequences of the phenomenon studied. . . collaboration. collaboration was a core concept i hypothesized to be foundational to disability management and its evaluation. its presence or absence contributed to an explanation of conditions, responses and consequences of disability management and it’s evaluation at the sites. the presence or absence of collaboration was significant to understanding the conditions at the sites, including: diversity of stakeholder values, degree of inclusiveness among stakeholders, power discrepancies among stakeholders, contextual (including political) influences, purposes for evaluation, evaluation questions being asked, evaluation processes, and intended evaluation uses. the presence or absence of collaboration was also central to understanding responses to conditions at the sites, including: which stakeholders’ values were predominant at the sites and why, how stakeholders with different values were responding to the presence or absence of inclusiveness, or to power discrepancies, how programs were responding to contextual and political pressures (i.e., for funding, influencing decision making, perceived risks due to lack of external recognition of program accomplishments), and what evaluation criteria and standards were in place. collaboration and its presence or absence was also valuable to understand the consequences of conditions and responses at the sites. these included: potential impacts of evaluation, integration of diverse stakeholders’ values into evaluation, and which evaluation findings were actually used by whom. another important finding was the role that collaboration played in differentiating types of disability management evaluation criteria. there were three possible sources of evaluation identified within the programs: evaluation conducted internally by program stakeholders (administrators and practitioners), evaluation conducted by external stakeholders (such as funders), and evaluation that involved collaboration between internal and external stakeholders. evaluation criteria were either linear and normative or pluralistic. both types of evaluation were potentially important to multiple stakeholders. evaluation criteria that were normative included: return to work and costing savings (both goals of disability management) and timeliness of services (having potential impact on both goals). normative evaluation involved monitoring data or performance management comparing program outcomes to criteria. normative evaluation did not explain reasons why targeted outcomes had or had not been met. evaluation that involved collaboration and integration of multiple stakeholders’ values was pluralistic and included criteria: client functioning and client satisfaction (referring to multiple stakeholders). pluralistic evaluation had the potential to contribute information on co-existing values and motivations, to explain different views of why programs may or may not be achieving goals, and to contribute information on ways programs could make improvements to maximize the likelihood of reaching goals that were valuable to multiple stakeholders. “evaluation is often most effective when it engages multiple internal and external customers and uses a participatory and collaborative approach” (russ-eft and preskill, , p. ). possible benefits of involving multiple stakeholders include: enhancing opportunities to understand the evaluand from different perspectives, making judgments about the worth of the evaluand that include different values, maximizing opportunities for more people to learn about and appreciate the evaluand, and including those who can act upon evaluation results. in addition, participatory evaluation “implies that, when doing an evaluation, researchers, facilitators, or professional evaluators collaborate in some way with individuals, groups, or communities who have a decided stake in the program, development project, or other entity being evaluated” (cousins and whitmore, , p. ). this emphasis on collaboration is also evident in the organizational behavior literature, where collaboration is defined as: “a joint endeavor, involving two or more people working together to complete a task. collaboration includes teamwork – the coordination of efforts of a group of people around a stated purpose. it involves constructive discussion among team members regarding the common workgroup goal” (weingart and jehn, , p. ). communication supports collaboration. communication had originally been coded as a separate conceptual code based on participants’ emphases of the role of communication. the consistent presence of communication and collaboration together informed my decision to incorporate the concept communication into the concept collaboration. communication has been described as an everyday activity but with effectiveness that can vary greatly (cai and fink, ). it is multidimensional, where participants simultaneously take multiple roles (sender, receiver, speaker, listener, group member, audience), are aware of verbal and non verbal messages; and, participate in multiple methods at once (in person, written, technological). stakeholders within programs collaborated, and stakeholders from within collaborated with stakeholders external to programs. for example, the bm site collaborated with employers during return to work plans: “we are in frequent contact with the worker to find out how things are going, what difficulties they are having…and there is always unforeseen problems that crop up, whether that’s with scheduling or whether that’s something they didn’t think they were going to have a problem doing and they’re finding it physically difficult and that’s where we either talk to them or go in [to the workplace and meet with the worker and employer] and say i need you to go back and look at is it a work technique issue, is there some type of equipment that would be helpful for the person to do their job, or is it something not physically suitable at this time” (bm ). another example involved labour site stakeholders communicating with clients and with employers. “the communication part is key. so much is communication. has the return to work coordinator maintained regular contact in the planning stages of the employee [being off work]? were you involved? another part is making sure the managers feel they are part of it, that they have a say. you don’t want them to feel we are dictating. were the department’s needs part of the return” (l ) collaboration was bounded in time and in space, during disability management services and during evaluation. . . . collaboration and learning as illustrated by role scores. where collaboration was present, stakeholders had increased opportunities for process learning from participation in evaluation. collaboration provided opportunities to receive formative feedback enabling them to modify and improve their services. there were also increased opportunities to develop more meaningful evaluation criteria relating to stakeholders’ values. the value of collaboration and learning to the participants of this study was further analyzed based on the role responses of the nine participants related to collaboration and evaluation. five categories were identified as most relevant: ) collaboration and problem solving, ) participatory decision making, ) open and accessible work environment including items related to a work space conducive of employees participating together, ) dissemination of information referring to the availability of necessary information to employees when needed, and ) evaluation including items that refer to the value of evaluation, or the value of evaluation if it were to be present. analysis of the nine participants’ scores indicated the ratings for each individual were generally consistent across the five areas, with minor exceptions. the exceptions consistently related to perceptions of participants regarding particular disability management programs or organizations. see table for a summary of participants’ scores on these five role categories. seven out of nine participants rated high collaboration based on two role categories: ) collaboration and problem solving, and ) participatory decision making. table participants’ role responses on categories related to collaboration and learning role dimensions participants bm bm l l l bpsy bpsy i i collaboration & problem solving . . . . . . . . . participatory decision making . . . . . . . . . open & accessible work environment . . . . . . . . . dissemination of information . . . . . . . . . evaluation . . . . . . . . . the two labour site participants whose low scores on ) open and accessible work environment, varied from their higher scores on ) and ), both referred to their program on the role. these responses reflected their belief that the labour program’s physical work space was not supportive of high collaboration. the two bpsy participants whose low scores on ) dissemination of information, varied from their high scores on ) and ), both referred to their organization on the role. these responses reflected their opinion information was not readily available within the organization. the two bm participants low whose low scores on ) evaluation varied from their high scores on ) and ) reflected their low opinion of evaluation of their program that was conducted by the external referring agency. . . contextual influences. evaluation context has been defined as, “the setting within which the evaluand (the program, policy, or product being evaluated) and thus the evaluation are situated. context is the site, location, environment, or milieu for a given evaluand” (greene, , p. ). the complexities of context have been recognized within evaluation for decades, without a unified conceptualization (rog, fitzpatrick and conner, ). context is important to evaluation because of, “its impact on evaluation plans, methods, implementation, and use, few develop the construct in depth” (fitzpatrick, , p. ). rog ( ) proposed five important components of context to consider: the problem being addressed; the intervention being examined; the broader environment or setting; the evaluation context; and, the decision making context. rog ( ) suggested seven dimensions to consider within the five components of context analysis: physical, organizational, social, cultural, traditional, political and historical. programs continue to develop “in response to changed conditions and new knowledge. such changes do not mean that what was done before was ineffective; rather, it means that as the world changes, the program must change” (patton, , p. ). adaptation to contextual influences was a main theme among the sites of this study, which according to participant interviews occurred because programs needed to adapt to survive or grow. all programs face dynamic contextual influences and the sites of this study were no exception. i hypothesized that understanding the contexts within which disability management programs function, and understanding how programs adapt to contextual influences, is essential to an explanation of variability in disability management and disability management evaluation. the five component framework for context analysis recommended by rog ( ) will be discussed in relation to the sites of this study. . . . the problem being addressed by evaluation. the programs of this study provided services related to a theme of employability and facilitating durable return to work if possible. services were multidisciplinary. disability management addresses a wide range of potential problems including: physical, psychological, social, organizational, political, financial, etc. it focuses on the impairment and its contextualization. . . . the intervention being examined. disability management involves managing interactions between impairments and their environments to overcome barriers (smart, ). the sites of this study provided services at different stages of disability management. the bpsy program provided counselling and career exploration during early stages of acute conditions, with a primary goal of helping clients learn to manage their disabilities. the bm program conducted functional and job site assessments to develop return to work plans, with a primary goal of providing accurate information that could facilitate return to work. the labour program implemented return to work plans that accommodated employees, with a primary goal that the work be suitable and meaningful. the insurance program contributed investigative services to obtain evidence to validate client functioning, with a primary goal of ensuring accident fund expenditures were appropriate. . . . the broader environment or setting. on a wider contextual level the disability management programs were influenced politically by government laws, including: freedom of information; employers’ duty to accommodate disabled workers; rights of persons with disabilities to physical access; and collective agreements. the programs each faced making decisions in response to contexts such as which conditions for funding matched their political orientations and were acceptable to them, and which were not. broader environmental influences within disability management that also required consideration included “systemic factors arising from health care, compensation and other social systems” (schultz, , p. ). . . . the evaluation context. program evaluation was conducted by different stakeholder groups: internally by program staff, externally by funders, or through collaboration between internal and external stakeholders. the physical settings of the four programs of this study were not threatened due to political or financial reasons, however, each program was aware that they continually relied on ongoing funding. the programs strived to maintain positive profiles within their organizations and to the public, and to be of value to funders and consumers of their services. . . . the decision making context. the primary decision makers who used evaluation findings included program funders, administrators and practitioners. it was recognized that at the workplace diverse stakeholders (employers, unions, workers, employee health professionals etc.) could learn from evaluation findings about how to better integrate workers back into the system. although this would be important to understand, the data had nothing to say about this. . . data management systems. the four organizations included in this study relied on electronic data management systems for storing information, and were developing data management systems with the use of technology that they planned to access for future monitoring, performance management and evaluation. this emphasis resonates with the views that data management systems can make evaluation more effective through evaluability assessments (wholey, ) and can lead to the use of a broad range of data in evaluation (chelimsky, ). in general, computer and communication information technologies (hardware and software) used to process, store, retrieve, and transmit information in electronic form are increasingly being advanced and miniaturized, “liberating users from past limitations of space and time so that they can use computers anywhere and anytime” (alavi and yoo, , p. ). organizations are leveraging technological capacities to make improvements “in the support of communication and collaboration processes” (p. ). maximum potential is realized within organizations that have a culture supportive of learning: where large scale efficiencies can result from centralized data bases, decision making can be enhanced through electronic communications, virtual work groups can interact, new models of data analysis and of business can be applied, and where digital devices are able to communicate directly with each other. effective learning organizations are able to transfer knowledge quickly and efficiently throughout the organization (preskill, ). the data that was being gathered and the electronic data management systems that were being developed at the sites of this study were in preliminary stages. data was not being maintained with specific evaluation questions in mind. the data was reported to include numbers of incoming cases, case assignments, outcomes and costs, but not specifics explaining program processes. data that was being gathered at these initial stages was more suitable for performance management or auditing, to compare outcomes to objectives. although participants hoped that eventually information systems could be useful for evaluation, in their present state they did not explain why performance was the way it was, and therefore, were not useful for problem solving, decision making, or resource allocation. according to the role results overall, the four sites in this study valued learning and were reported to have leadership that supported learning. however, the programs had limited ability to access important information. with support for learning at the sites and preliminary data management systems being established, there was potential for data management systems to eventually be developed that could be used to complement evaluative investigations and become sources of dissemination of important information. . . primary disability management evaluation criteria. there were five primary evaluation criteria used in disability management evaluation, although all were considered only at one site of this study, the labour program. ( ) client functioning: in cases where impairments were physical, all four sites recognized how successful disability management related to functioning of the individual. the labour and bpsy sites particularly recognized the significance of client functioning and the interactions of impairments and environments. ( ) client satisfaction: client satisfaction surveys were administered at three of the four sites, to clients at the bm site, to clients and clients’ managers at the labour site, and to prospective referral sources within the organization at the insurance site, but results were interpreted and used in very different ways. the client satisfactions survey at the bm site was summarized into one numerical rating. client satisfaction at the labour site was analyzed by the joint committee and findings provided as feedback to the labour program coordinators, who modified their services in response. the insurance site reviewed survey findings to modify their services. ( ) cost savings: cost savings was a criterion only for the insurance site. at the organizational level the accounting department estimated financial cost savings resulting from insurance site services. at the organizational level of the labour site a peoplesoft data management system was being developed to eventually be used for evaluation of cost savings and other performance management and evaluation purposes. minimization of social costs to clients during disability management was implicitly valued by all four sites but not evaluated by any. ( ) timeliness: timeliness of services related to established standards was a criterion at the bm and insurance sites. both programs tried to meet established standards. the labour and bpsy sites provided services as needed, their goals being continuous availability, but they did not evaluate this. ( ) return to work: the labour site was the only site that formally evaluated return to work outcomes. within all the sites there was either explicit or implicit a goal of contributing to appropriate vocational outcomes: avoiding the need to go off work due to disability; the current or eventual return to work of clients; or, client adjustment to not being able to return to work following illness or injury. . evaluation theory . . situating disability management evaluation at the sites within alkin & christie’s evaluation theories. . . . biomedical site. evaluation conducted externally by the program’s main referring agency involved a key performance indicator measuring four criteria: time from referral to first client contact; report turnaround time; client satisfaction; and number of client satisfaction surveys returned. each criterion was measured on a scale from to including the client satisfaction survey a questionnaire that the referring agency reduced to one numerical rating. bm site scores on the four criteria were then compared to scores of all the organizations the referring agency contracted with, presumably to be considered in making decisions of which organizations’ contracts to renew. evaluation conducted by the main referring agency was primarily concerned with the methods side of evaluation use. evaluation of the bm program was also conducted internally by the bm program staff including: exit interviews with clients; self evaluation of reports; employer and worker reviews of job demand analysis reports; and self evaluation of measuring apparatus. the main priority of the staff was to ensure usefulness and accuracy of their services and reports. the bm staff considered the opinions of multiple stakeholders where possible. evaluation conducted by bm staff was primarily concerned with evaluation use. . . . labour site. formative evaluation occurred throughout implementation of each return to work plan, where the program coordinator, client and client’s manager met regularly to provide feedback, modifying services in response. at the conclusion of services client satisfaction surveys were administered to every worker, and manager summary questionnaires were administered to every manager. survey results were analyzed by the joint committee overseeing the program, and passed on to the program coordinators. the labour site was operated by the joint labour-management committee with primary commitment of being of use to both labour and management, assisting every client to stay at work, return to work, or adjust to not being able to work. evaluation at this site was primarily concerned with the value side of evaluation use. . . . biopsychosocial site. the bpsy site was not formally evaluated, but was informally evaluated in several ways. the team leader met with each program counsellor to consult on individual cases. program counsellors were each administered a questionnaire pertaining to organizational standards. formative feedback on case management was shared among multidisciplinary staff of the organization. client services included setting and evaluating smart goals. services at this program and organization emphasized sharing professional and non professional stakeholder perspectives. evaluation at the bpsy site was primarily concerned with the valuing side of evaluation use. . . . insurance site. the program supervisor evaluated every case to confirm services were complete and reports met established standards. criteria and standards were established by the supervisor. report turnaround time was compared to standards set for each type of service. cost savings were estimated by the accounting department of the organization, using a formula created to compare actual costs on client claims where the insurance site services had been accessed, to estimate costs had the services not been accessed. estimated costs were based on costs for other similar cases where services had not been accessed. the insurance site administered a client satisfaction survey to prospective referral sources from the claims division of the organization. evaluation at the insurance site was primarily concerned with evaluation use. . . sources of evidence of evaluation use at the sites. based on ( ) interview evidence provided by participants, and ( ) situating evaluation at the four sites according to christie and alkin’s ( ) evaluation theories, disability management evaluation at the four sites of this study was primarily concerned with the use of evaluation findings, and secondarily concerned with pluralistic values of multiple stakeholders. use of evaluation findings emanates from the social accountability root of evaluation, to improve social programs. valuing emanates from the epistemological root, where objective knowledge is based prescriptively on the opinions of evaluation experts, and subjective knowledge is based on pluralistic values of multiple stakeholders. evaluation at all four disability management sites emphasized timeliness of services and client functioning as important evaluation criteria. the bpsy and labour sites integrated multiple stakeholder values as a secondary emphasis, whereas evaluation at the bm and insurance sites emphasized evaluators’ priorities relating primarily to outcomes. evaluation was aimed at improving services. evaluation at the sites was instrumental, contributing to decisions. programs almost exclusively responded to evaluation findings by modifying their services trying to meet ideal standards (refer to tables , , and ). other uses of evaluation findings were justification of program funding and planning future program goals. this evidence demonstrated that disability management programs were responsive to feedback regarding their performance, to improve services. this social accountability emphasis is evidence disability management programs would be expected to embrace increased evaluation and organizational learning to improve social programs. role results supported that programs valued evaluation and learning at the sites. . . types of evaluation use at the sites. evaluation was used in multiple ways. this included instrumental use, both process use involving using evaluation findings for formative improvements to programs, and conceptual use involving stakeholders’ increased understandings of the potential benefits of evaluation and learning to programs. there were instances of symbolic use, including imposed use where funders influenced program administrators’ decisions, for example when the bpsy program eliminated a counselor position that would have been dependent upon results oriented evaluation, a purpose they did not support for their program. there was also evidence of symbolic mechanical use to meet imposed evaluation requirements, such as when bm program administrators complied with evaluation required by the main referring agency, but found the evaluation meaningless, and only cooperated to secure future referrals. primary linear evaluation criteria, return to work, cost savings, and timeliness of services, related primarily to performance management. return to work and cost savings were goals of disability management, and timeliness had potential to impact success in achieving both goals. these criteria had the potential to be significant to multiple stakeholders, as they were valued by funders, workers and employers. however they did not explain reasons why outcomes were what they were. diverse stakeholder values were integrated into evaluation in part through the use of client satisfaction surveys and exit interviews, providing information that did contribute to explanations of how program operation may be impacting outcomes, suggesting means for improvements and use. operationalization of the complex multidimensional concept client functioning in terms of not only medical impairment, but also abilities and contextual influences, did enable case specific explanations of how an individual could overcome barriers. evaluation that was concerned with understanding contextual influences and integrating multiple stakeholder’ interests had the potential to leverage new insights to reach program goals, and to improve future programs, enlightenment use. . . working evaluation logic at the sites of this study. to further a theoretical understanding of disability management evaluation, the logic of evaluate inquiry at the four sites is examined. depending upon the purpose of an evaluation, different procedures are followed giving rise to different types of evidence, evaluative claims and justifications of those claims (smith ). fournier ( ) proposed that evaluators justify their conclusions and claims by following both a general and a working logic. evaluators identify a problem, define or operationalize a phenomenon of interest in relation to the problem that is the object of evaluation, identify criteria and kinds of evidence to examine, and justify the claims that are made. four main approaches to working logic of evaluation are: connoisseurial (based on qualities identified by an expert); pluralistic (based on values of stakeholders); causal (treatment-outcome relationships); and consumer (properties of a functional product) (fournier, ; ). . . . biomedical site. elements of the bm paradigm include presumption of a medical condition that is a physical pathology and symptoms directly proportionate to the pathology. services at the bm site included: objective measurement of client functional capacity, job demands analyses, and development of graduated return to work plans. the bm site was evaluated by the main referring agency and by bm program staff. the main referring agency followed a consumer working logic. specification of the problem for the main referring agency was a need for timely services and client satisfaction information. the phenomenon of interest was timely bm site services and submission of completed client satisfaction surveys. questions posed focused on four criteria on the key performance indicator: time from referral to first client contact; report turnaround time; client satisfaction; and number of client satisfaction surveys returned. claims about the value of services were based on: bm site scores compared to: ( ) standards on the four criteria of the key performance indicator; and, ( ) compared to scores of other providers that the referring agency contracted with on the same criteria. staff at the bm site conducted evaluation that followed a consumer working logic. their problem was a need for ongoing new referrals to be able to maintain their business, and the phenomena of interest were accurate services that were timely and of value to referring sources. evaluative questions included: client satisfaction based exit interviews, report quality; job demands’ reports accuracy; and measuring equipment accuracy. the bm site staff claimed high client satisfaction, accuracy and timeliness indicated high value of their services. although the evaluation of bm site services followed a consumer approach working logic, the main referring agency and the bm site staff identified different evaluation criteria. different selection of criteria attested to the main referring agency’s focus on measuring outcomes, compared with the bm site staff’s focus on more descriptive evaluative perspectives of relevant stakeholders. neither of these two sources of evaluation criteria alone incorporated a complete understanding of the bm site services, and how the program related to its context. a true understanding of the bm site services would incorporate evaluation criteria important to the diverse stakeholders the program had the potential to impact. evaluation would then minimize the risk of omitting critical criteria, and maximize the likelihood of contributing information that was most useful. . . . labour site. elements of the labour paradigm include presumptions that: the impairment is best managed within a workplace context; workers and employers needs can be complementary; employers are responsible to accommodate workers with suitable work; and diagnosis is secondary to matching job demands to functional capacities. services at the labour site included assisting workers to stay at work, return to work or adjust to not being able to work due to illnesses or injuries. the labour site was evaluated by a union-management joint committee. the problem for the labour site program was a need for workers and management to provide information to the program that would assist the program to modify services that would increase the ability to achieve goals. the phenomenon of interest during return to work programs was iterative communications among the worker, worker’s manager and program coordinator. indicators of services were the client satisfaction survey, a manager summary questionnaire and data on return to work outcomes. questions posed were meant to provide: feedback during return to work plans, completion of the worker survey and manager questionnaire, and document return to work outcomes. high satisfaction ratings on surveys and questionnaires and high return to work statistics were evidence of program success. evaluation of labour site services followed a consumer approach working logic. the labour site needed information on their services so they could make modifications to maximize successful outcomes and to justify the value of the program. . . . biopsychosocial site. elements of the bpsy paradigm include presumption of: an interdisciplinary whole person approach; a conceptual distinction between impairment and disability; and impairment does not reliably predict disability. services at the bpsy site included multi-disciplinary and inter-disciplinary professional services for adults who had sustained catastrophic injury or illness. the bpsy site was not formally evaluated, but program counsellors received informal feedback on their interventions with individual clients from their team leader and from professionals from other programs within the organization who were working with the same clients. evaluation of bpsy site services illustrate multiple working logics and can be explained from perspectives of three approaches: connoisseurial, pluralistic and consumer. multi-disciplinary professionals contributed specialized expertise to develop and implement rehabilitation interventions for individual clients and evaluate outcomes. the problem from the connoisseurial approach was to develop rehabilitation interventions targeted at individual clients. the phenomenon of interest were treatment interventions developed by experts, and evaluation questions addressed whether the interventions achieved the intended goals, and claims were made about the value of the interventions. the organization was committed to a pluralistic approach because what multiple stakeholders valued was important, and the assumption that clients who set their own goals would be most motivated to succeed. the problem was maximizing the opportunities for clients to succeed at reaching their rehabilitation goals. the phenomenon was inter-disciplinary services available to clients supporting them to set and achieve multiple goals. questions focused on what inter-disciplinary service qualities had the intended impact, and claims related to what service qualities were important. at the bpsy site individual programs were starting to build data bases that could provide evidence to evaluate service outcomes a strategy typical of a consumer approach. the problem was providing services for clients who experienced accidents or illnesses to successfully manage their resultant impairments. interests included maintaining rapport, vocational counselling and exploration, referrals and counselling support. evaluation questions were posed regarding what vocational and inter-disciplinary assistance would best facilitate clients’ adjustment and managing of impairments. claims were made that vocational services available on demand to clients contributed best to their short and long term vocational adjustment and their employability. . . . insurance site. elements of the insurance paradigm include presumption that: people who anticipate secondary gain are likely to magnify disability; and objective medical proof of impairment and disability can be proven. services at the insurance site included investigations into possible fraud. services provided on individual insurance cases were evaluated by the program supervisor. overall cost savings of the program were estimated by the accounting department of the organization. the problem was protection of the integrity of the accident fund, ensuring funds were allocated appropriately. the phenomenon was investigator interventions to obtain accurate information when miscommunication or lack of complete information resulted in inability to confidently allocate insurance funds appropriately. questions involved acquiring accurate information on individual insurance client impairment. claims were made that investigations provided accurate information, accurate information resulted in reduced biases and appropriate allocation of the accident fund, and overall claim cost savings resulted from the insurance site services. evaluation of insurance site services followed a consumer working logic. the program supervisor evaluated report turnaround time, completion of services and quality of reports in relation to established standards, and cost savings resulting from the program were evaluated by the accounting department of the organization. . . . summary of working logic in program evaluation at the four sites. disability management evaluation at the sites predominantly followed a consumer approach to working logic. consumer working logic has a locus of value based on properties of the products or services provided, questioned whether criteria and standards had been met, and integrated data into a claim of merit or worth. the exception to this was at the bpsy site where there were no formal evaluation of services, and informal evaluation followed multiple working logics: connoisseurial, pluralistic and consumer. fournier ( ) stressed the importance of defining the phenomenon because it reflects the locus of values, selection of criteria and what kinds of evidence are sought to justify what warrants and make what claims. this is relevant to developing a theory of disability management evaluation. while evaluation that is meaningful emphasizes program outcomes (return to work, cost savings or timeliness of services), stakeholder values and expert interventions are also important. the potential value of these simultaneous working logics was evidenced at the bpsy site, where if programs were formally evaluated there could have been the potential for evaluation to impact to multiple stakeholders. . a tentative grounded theory of disability management evaluation the conceptual groupings identified within dm program evaluation are illustrated in figure , and not surprisingly this figure illustrates common components in most - program evaluation. table illustrates how theoretical orientations varied across the paradigmatic sites since there are notable differences. for example, the bm site especially emphasized the usefulness of evaluation based on appropriate data collection and analysis procedures, while the bpsy site emphasized usefulness fostered by the inclusion of multiple stakeholders, including experts and clients. the table also illustrates that only one site, the labour disability management program, used all five primary evaluation criteria, the insurance site used four, the bm site focused on client functioning, client satisfaction and timeliness, and the bpsy site focused on client functioning and timeliness only. figure summarizes the orientation of dm evaluation by drawing on alkin & christie ( ) and fournier ( ) to illustrate the fundamental nature of dm evaluation theory and its logic. this figure illustrates that dm evaluation is grounded primarily in alkin & christie’s “use” tree branch and therefore seems to have a social accountability orientation. consistent with this emphasis on “use” dm evaluation adopts a predominately consumer oriented working logic, although the bpsy site was more complex than the others incorporating expertise and multiple stakeholder views and so drew on the logic of a connoisseurship and pluralist evaluation approaches as well. a consumer approach emphasizes evaluation that focuses on the properties of a functional product—in this case, the product is dm program services and the properties are reflected in the five primary evaluation criteria identified. the combination of this figure conceptual groupings within disability management evaluation disability management program context of disability management program & organization adaptation analyses of impairment- environment & program- context interactions data management systems evaluation criteria -return to work -cost savings -timeliness -client satisfaction -client functioning reporting evaluating findings & program feedback table theoretical orientations for dm paradigms paradigm/site dominant evaluation theory working logic approach evaluation criteria bm use (methods) consumer client functioning client satisfaction timeliness insurance use consumer client functioning client satisfaction timeliness cost savings labour use (valuing) consumer client functioning client satisfaction timeliness cost savings return to work bpsy use (valuing) consumer connoisseurship pluralist client functioning timeliness emphasis on use and a consumer orientation orients dm evaluation primarily to program outcomes reflected in two key common evaluation criteria (client functioning and timeliness of services). nonetheless, there is a less prominent but still important orientation to multiple stakeholder involvement in evaluation that was especially apparent in the bpsy site evaluation practice. figures and and table present a visual summary of the theory of disability management evaluation being developed in this study. figure shows how evaluation is primarily concerned with use of findings, but secondarily for some programs is also concerned with multiple stakeholders’ values. this more abstract analysis and interpretation is grounded in the data of this study that revealed a differentiation between evaluation that measured program outcomes (where criteria were sometimes critical to limited stakeholders such as funders) versus evaluation that incorporated the interests of multiple stakeholders resulting in findings with more comprehensive potential for a wider impact among disability management stakeholders. figure disability management evaluation theory and logic dm program services program adaptation to organization & context evaluation emphasizes use consumer-oriented evaluation outcomes based evaluation stakeholder values . answering the research questions: a summary this study started with an exploration of evaluation in disability management to develop a theory of practice, an area that has not been well documented in the literature. four research questions guided this study. . . what is the extent and nature of evaluation practice within the disability management programs? three of the four sites of this study formally evaluated their programs but evaluation varied, where some sites focused on program outcomes, including return to work, timeliness and cost savings, as well as client satisfaction. other sites attended more to contextual interactions and multiple stakeholder perspectives. evaluation at these latter sites was enriched by more in depth information on programs’ adaptation to contextual influences, and how programs managed impairment environment interactions. evaluation at all of the sites reflected an emphasis on the utilization of evaluation and a consumer or product driven working logic. . . how does disability management evaluation practice vary depending on whether the organization is a learning organization? sites that reported greater collaboration and communication reported high learning within the program, throughout the organization and from evaluation. programs that reported little collaboration and communication did not consistently report high organizational learning. . . how does disability management evaluation reflect diversity and cultural constructions? disability management evaluation at the sites was primarily concerned with use, grounded in social accountability for learning from evaluation to improve service outcomes. evaluation was secondarily concerned with multiple stakeholder perspectives. although the participants described sensitivity to cultural influences at the sites where these influences did exist, the data did not reveal much about diversity, cultural issues or cultural competence in evaluation at the sites. . . what evidence is there that disability management evaluation is grounded in a particular paradigm of disability and return to work? this study illustrated that evaluation was grounded in particular paradigms, even though there are overarching similarities. the bm and insurance sites emphasized program outcomes based on criteria set by the funder, supervisor or staff. evaluation practice mimicked the assumptions of the dm paradigms and focused on measurable and objective outcomes. the labour and bpsy sites focused on evaluation that incorporated multiple stakeholders, and included consideration of client context interactions. the labour site practiced formal evaluation taking into consideration all five primary evaluation criteria, covering the greatest breadth among the sites. . analysis of the state of disability management evaluation in relation to the evaluation field at the onset of this study the limited literature on disability management evaluation indicated evaluation had been primarily normative, focused on summative measures related to economic outcomes such as return to work rates, incidence and duration of absence, lost productivity and cost reduction. these criteria reflected the values of employers and funders. there was a lack of evidence reflective of pluralistic values of multiple stakeholders, and no explanations of why programs were functioning as they were. this study has shown that evaluation in the field is concerned with a consumer logic and use of findings. these purposes were primarily focused on the use of evaluation findings for program improvement, and limited to performance management. programs were shown to be secondarily concerned with pluralistic values of multiple stakeholders. this study identified five primary evaluation criteria that are each likely valued pluralistically. situating observed disability management evaluation practices within the greater evaluation field revealed that the questions and problems that disability management evaluation is currently facing are similar to the questions and problems the field of evaluation encountered during its successful evolution, for example expanding away from a mainly scientific approach of cause and effect to more descriptive explanations of programs. this research revealed a notable lack of concern within disability management evaluation regarding evaluation that prioritizes mainly monitoring and performance management to assess existing program outcomes and accountability. there was little evidence that programs were concerned with other purposes such as empowerment, being transformative, or developing long term policy toward improved disability management programs. the types of values and purposes that would go along with these latter concerns would likely overlap with and be representative of greater appreciation for learning within disability management programs, and perhaps a wider existence of organizational learning. participants did report valuing evaluation and learning, indicating perhaps developments in those areas related to disability management. . contributions of this study this exploratory study is a timely and relevant response to the paucity of published literature on disability management evaluation. it offers to the field of disability management a systematic review of evaluation practices that extends what was previously documented in the literature, with potential to improve future evaluations and facilitate learning. research on evaluation practices has the potential to contribute to understanding fundamental evaluation issues, for example through descriptive theory, researching “what evaluation looks like, under different conditions, and what kinds of consequences result from various approaches to evaluation” (mark, , p. ). mark recommends more research on evaluation to stimulate further contributions to an evidence base for evaluation practice, and for classifying, comparing and synthesizing findings that result. contributing insights into evaluation knowledge, purposes, values, practices, uses and impacts within one industry, disability management, has the potential of raising awareness of applicability in other similar situations, and supplies information that may be applicable to longer term development of best practices. . limitations of this study i acknowledge that being the sole researcher conducting this study, including doing all the coding myself, was a limitation that had potential to introduce biases. i attempted to counter this possibility by practicing reflexivity, addressing my assumptions, being systematic and maintaining clear records that i returned to repeatedly during analyses. the samples of sites and number of participants were small, and although i did believe that concepts were saturated, doubling each of the numbers would have introduced another interesting dimension of triangulation. participants were limited to administrators and practitioners from each site, which left out important stakeholders including clients who may have introduced unique insights into evaluation and learning at the sites. however, the participants that were included were primary stakeholders given they were the practitioners of evaluation. use of the role did not conform to the intended purpose, but i believe my use was an appropriate application, and the findings were important to the analysis. there were limited evaluation documents, and apparently no evaluation reports available. all instruments used for evaluation were obtained. this explorative study provided a glance into current evaluation practices within disability management from a perspective not previously viewed. . future directions this study identified five primary evaluation criteria, and explained how four of those criteria could be evaluated in relation to established standards: return to work, cost savings, timeliness of services, and client satisfaction (this criteria was evaluated through multiple item surveys and interviews). the fifth evaluation criterion, client functioning, was more complex to operationalize. contextualized client functioning is recognized in the literature and the field as crucial to disability management (smart, ). client functioning is no longer recognized as an impairment or pathology. its elements include the biomedical, psychological, social, organizational, political, legal and economic, etc. the world health organization’s (who, ) developed an international classification of functioning, disability and health that involves a systematic coding to understand health related states, outcomes and determinations. this classification shifted focus from the impairment to body functions, abilities and environmental factors. this study identified how important client functioning was to disability management, particularly demonstrated at the labour and bpsy paradigm sites. however, much has been left to be discovered regarding how client functioning could best be evaluated. evaluation has the potential to disaggregate assumptions, and analyze client functioning in context, revealing how links, values, biases, conditions, responses and outcomes operate. knowing how underrepresented those with impairments are in the labour market and the cost they endure as a result, and being aware of the potential for evaluation to contribute in some way to their empowerment, incites interest, curiosity and hopefully too, has heuristic significance as a suggested future area for research. . conclusions the findings of this study have the potential to stimulate future research on evaluation, enhance evaluation capacity in the field of disability management, and foster appreciation among professional disability management practitioners of the role that program evaluation can play. little has been previously documented about evaluation practices in disability management. development of a theoretical framework offers a preliminary road map, where 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( ). return-to-work outcomes following work disability: stakeholder motivations, interests and concerns. journal of occupational rehabilitation, , - . appendix a consent form the nature of program evaluation in disability management dear sir or madam: you are invited to participate in a research project which will explore evaluation currently being practiced in the field of disability management. my name is patricia l. swenson and i am doctoral candidate at the university of british columbia, in the department of educational and counselling psychology, and special education. you are being invited to take part in this research as disability management is practiced at your organization. purpose of this research study disability management programs involve multi-disciplinary health, safety and return to work processes, which are proactively applied within organizations to minimize the economic and social costs resulting from time off work due to illness or injury. there is well documented research describing how disability management programs have evolved over the past two decades. december , version page of department of educational and counselling psychology, and special education the university of british columbia faculty of education main mall vancouver bc canada v t z tel - - fax - - www.ecps.educ.ubc.ca little has been published regarding evaluation in the field of disability management. evaluation is the only objective way of understanding what aspects of a program are working and where improvements are needed. the purpose of this research project will be to improve understanding by developing a conceptual framework regarding the nature of evaluation currently practiced in disability management programs. your participation in this research study as a participant you will be asked to complete a questionnaire (less than minutes). this questionnaire, the readiness for organizational learning from evaluation inventory (role), is used to assess the perceptions of personnel about their work environment in relation to learning from evaluation. you will also participate in a face-to-face interview (approximately minutes). interview questions will mainly address issues related to evaluation of the disability program you work with, and characteristics of your organization you think relate to learning from evaluation. i will audio tape the interview and transcribe the audio tape. i will then use a computer software program to analyze the transcript. your identity will not be revealed as a code name will be given to the audio tapes, transcripts, computer data and on the final report. tapes and documents will be kept in a secure locked office. computer files will be saved on a hard drive used only for this research. none of the saved data will be used for any purpose other than this study without your written consent. there are no foreseeable risks. december , version page of if further questions develop from the interview, you may be asked to participate in more than one interview (approximately minutes). with the approval of your organization, you will be asked for examples of recorded information (e.g. documents, files) that your organization maintains to evaluate their disability management program. general information from these sources may be documented. this information will be managed in the same secure manner as interview data. possible benefits of participating in this research include: contributing to a better understanding of how disability management programs are evaluated, and gaining an increased awareness of how your program and your organization may learn from evaluation. contact information if you have any questions about this study you can contact me by email. this research report will be submitted as a final project for my dissertation study at the university of british columbia. my supervising professor and the principal investigator for this study is sandra mathison, phd, professor in the department of educational and counselling psychology, and special education. if you would like to receive a summary of the research findings please contact me via email or telephone. december , version page of if you have any concerns about your treatment or rights as a research subject, you may contact the research subject information line in the ubc office of research services. consent to participate your participation in this study is entirely voluntary, and you may refuse to participate or withdraw from the study at any time. your signature below indicates that you have read the information in this letter and consent to participate. if you are willing to participate please type your name and date on the space provided, save the document on your computer, and send the saved document to me as an attachment to an email. i agree to participate in the study. name of participant: ________________________________ date: _____________________________________________ december , version page of preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. appendix b the readiness for organizational learning and evaluation instrument (role)  hallie preskill & rosalie t. torres directions before you begin responding to the items, please check one of the two boxes below to indicate whether you will be thinking about the organization as a whole, or your department /unit as the focus for your ratings. base this decision on the entity with which you are most familiar. for example, if you are part of a large department it probably makes sense to respond in terms of your department. on the other hand, if you are very familiar with the organization as a whole, you can respond in terms of the organization.  i will be thinking about the entire organization.  i will be thinking about my department/unit. for each of the items below, circle the number that best represents your opinion based on your experiences, and not on how you think other individuals would answer, or your organization’s official policy or intent. strongly strongly disagree agree culture collaboration and problem solving . employees respect each other’s perspectives and opinions. . employees ask each other for information about work issues and activities. . employees continuously look for ways to improve processes, products and services. . employees are provided opportunities to think about and reflect on their work. . employees often stop to talk about the pressing work issues we’re facing. . when trying to solve problems, employees use a process of working through the problem before identifying solutions. . there is little competition among employees for recognition or rewards. . employees operate from a spirit of cooperation, rather than competition. preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. strongly strongly disagree agree . employees tend to work collaboratively with each other. . employees are more concerned about how their work contributes to the success of the organization than they are about their individual success. . employees face conflict over work issues in productive ways. . employees generally view problems or issues as opportunities to learn.  risk taking . mistakes made by employees are viewed as opportunities for learning. . employees continuously ask themselves how they’re doing, what they can do better, and what is working. . employees are willing to take risks in the course of their work. . employees are committed to being innovative and forward looking. . employees are confident that mistakes or failures will not affect them negatively.  participatory decision making . employees generally trust their managers or supervisors. . managers and supervisors view individuals’ capacity to learn as the organization’s greatest resource. . employees use data/information to inform their decision-making. . asking questions and raising issues about work is encouraged. . employees are not afraid to share their opinions even if those opinions are different from the majority. . i feel safe explaining to others why i think or feel the way i do about an issue. . employees are encouraged to take the lead in initiating change or in trying to do something different. . managers and supervisors make decisions after considering the input of those affected. preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. strongly strongly disagree agree . in meetings employees are encouraged to discuss the values and beliefs that underlie their opinions. . employees are encouraged to offer dissenting opinions and alternative viewpoints. leadership . managers and supervisors admit when they don’t know the answer to a question. . managers and supervisors take on the role of coaching, mentoring and facilitating employees’ learning. . managers and supervisors help employees understand the value of experimentation and the learning that can result from such endeavors. . managers and supervisors make realistic commitments for employees (e.g., time, resources, workload). . managers and supervisors understand that employees have different learning styles and learning needs. . managers and supervisors are more concerned with serving the organization than with seeking personal power or gain. . managers and supervisors are open to negative feedback from employees. . managers and supervisors model the importance of learning through their own efforts to learn. . managers and supervisors believe that our success depends upon learning from daily practices. . managers and supervisors support the sharing of knowledge and skills among employees. . managers and supervisors provide the necessary time and support for systemic, long-term change. . managers and supervisors use data/information to inform their decision-making. preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. strongly strongly disagree agree systems and structures  open and accessible work environment . there is little bureaucratic red tape when trying to do something new or different. . workspaces are designed to allow for easy and frequent communication with each other. . there are few boundaries between departments/units that keep employees from working together. . employees are available (i.e., not out of the office or otherwise too busy) to participate in meetings.  rewards and recognition systems and practices . employees are recognized or rewarded for learning new knowledge and skills. . employees are recognized or rewarded for helping solve business/organizational problems. . the current reward or appraisal system recognizes, in some way, team learning and performance. . employees are recognized or rewarded for helping each other learn. . employees are recognized or rewarded for experimenting with new ideas.  relationship of work to organizational goals . employees understand how their work relates to the goals or mission of the organization. . employees’ performance goals are clearly aligned with the organization’s strategic goals. . employees meet work deadlines. preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. strongly strongly disagree agree communication of information  availability . information is gathered from clients, customers, suppliers or other stakeholders to gauge how well we’re doing. . currently available information tells us what we need to know about the effectiveness of our programs, processes, products, and services. . there are adequate records of past change efforts and what happened as a result.  dissemination . there are existing systems to manage and disseminate information for those who need and can use it. . employees are cross-trained to perform various job functions. . employees have access to the information they need to make decisions regarding their work. . employees use technologies to communicate with one another. . when new information that would be helpful to others is learned or discovered, it gets disseminated to those individuals. teams . my department/unit currently operates via (or is transitioning towards) a team-based structure.  yes, this is true.  no, this is not true. . employees are provided training on how to work as a team member.  yes, this is true.  no, this is not true. . my work is sometimes conducted as part of a working group that is or could be identified as a “team.”  yes, this is true. (continue with item )  no, this is not true. (go to item ) preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. strongly strongly disagree agree respond to items - based on your experiences as a team member. . when conflict arises among team members, it is resolved effectively. . team members are open and honest with one another. . team meetings are well facilitated. . team meetings address both team processes and work content. . team meetings strive to include everyone’s opinion. . teams are encouraged to learn from each other and to share their learning with others. . teams accomplish work they are charged to do. . teams are an effective way to meet an organization’s goals. evaluation please use the following definition of evaluation when responding to the items below: evaluation is a process of systematic inquiry to provide information for decision- making about some object – a program, project, process, organization, system, or product. use of the evaluation results might lead to making refinements to the program or to offering new services or products. . the integration of evaluation activities into our work has enhanced (or would enhance) the quality of decision-making. . it has been (or would be) worthwhile to integrate evaluation activities into our daily work practices. . managers and supervisors like (or would like) us to evaluate our efforts. . evaluation helps (or would help) us provide better programs, processes, products and services. . there would be support among employees if we tried to do more (or any) evaluation work. . doing (more) evaluation would make it easier to convince managers of needed changes. preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. strongly strongly disagree agree . this would be a good time to begin (or renew or intensify) efforts to conduct evaluations. . there are evaluation processes in place that enable employees to review how well changes we make are working. additional information . which of the following best describes your job category? (check one.)  first-line supervisor  middle manager  senior manager  administrative  production  sales  non-managerial professional  technical  customer service  other . which of the following best describes your organization? (check one.)  manufacturing  business services  transportation/communication/utilities  health services  wholesale/retail trade  finance/insurance/banking  education services  government (local, state, federal)  non-profit  other . how long have you worked for this organization? (check one.)  less than months  months – year  - years  - years  - years  more than years preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. the readiness for organizational learning and evaluation instrument (role) purpose this instrument is designed to help an organization determine its level of readiness for implementing organizational learning and evaluation practices and processes that support it. the instrument’s results can be used to:  identify the existence of learning organization characteristics  diagnose interest in conducting evaluation that facilitates organizational learning  identify areas of strength to leverage evaluative inquiry processes  identify areas in need of organizational change and development. in sum, the organization may use the results to focus its efforts on improving or further strengthening areas that will lead to greater individual, team, and organizational learning. background and rationale in an effort to respond to internal and external demands for growth and success, many organizations have adopted the goal of becoming a learning organization. organizational learning is “a continuous process of organizational growth and improvement that (a) is integrated with work activities; (b) invokes the alignment of values, attitudes, and perceptions among organizational members; and (c) uses information or feedback about both processes and outcomes to make changes” (torres, preskill & piontek, , p. ). evaluation conducted in support of organizational learning provides a means for (a) developing a community of inquirers, (b) harnessing the knowledge capital of its members, and (c) addressing problematic issues that face the organization. it can serve as a catalyst for learning and action on organizational issues (preskill & torres, , p. ). implementing organizational learning and evaluation efforts, however, is not an easy task. it requires that the organization carefully assess how prepared its structures, policies, procedures, and members are to support organizational learning and evaluation practices. description of the instrument the items on the instrument reflect the research on organizational learning and evaluation processes and practices. the results from this body of research suggest that an organization must have certain elements of its infrastructure in place if it is to truly support and encourage organizational learning. research on the use of evaluation findings has also shown that the organization’s culture and context significantly influence the extent to which evaluation findings are used to support learning and decision making. role consists of items grouped into six major dimensions. these include: (a) culture, (b) leadership, (c) systems and structures, (d) communication, (e) teams, and (f) evaluation. based on the book, evaluative inquiry for learning in organizations, . preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. within four of these dimensions are eight subcategories (see table ). three additional questions are included to provide information about the respondent and the organization. as individuals respond to each item, a picture begins to emerge that describes the extent to which organizational learning and evaluation practices and systems are present in the organization. reliability data for the instrument are shown in table (see also preskill, torres, & martinez- papponi, ) . respondents are asked to respond to (a) likert scale items on a scale of to , with meaning “strongly disagree,” and meaning “strongly agree;” (b) three yes/no items; and (c) three multiple choice items. in administering the instrument with organization members, it is important to emphasize that there are no right or wrong answers. what matters most is their opinion based on their experiences. use of the instrument is most effective when its items are answered honestly and the organization treats individuals’ responses confidentially. we recommend that the results for all respondents be aggregated and reported in summary form. the instrument can be administered to single or multiple departments within an organization, or to the entire organization. analysis the instrument data should be entered in a database and mean scores calculated for each dimension and subcategory. the results of this analysis can be displayed on the worksheet shown on page . interpretation of results if a department or organization were to score low in one or more of the dimensions, this would indicate that learning from evaluation might not be supported or allowed to succeed. likewise, it would indicate that the department or organization isn’t prepared to engage in other kinds of organizational learning practices. these kinds of results can help the organization determine where to focus its improvement efforts if its goal is to become a learning organization. example let’s say a training department administered the instrument to its employees. the aggregated results for the six dimensions from the survey are shown below. in interpreting the results, the department’s management might conclude that it’s leadership, culture, and systems of communication are doing pretty well – at least in terms of supporting organizational learning principles. on the other hand, the unit’s systems and structures, its use of teams, and use and/or support of evaluation are less likely to facilitate organizational learning. based on these results, the department decides to devote further effort to examining the results of the subcategories in the systems and structures dimension (open and accessible work preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. environment, rewards and recognition systems and practices, and relationship of work to organizational goals). at the same time they begin looking at ways in which teamwork and evaluation efforts can support organizational goals. dimensions with mean scores of . or above dimensions with mean scores below . leadership ( . ) communication ( . ) culture ( . ) systems and structures ( . ) teams ( . ) evaluation ( . ) references preskill, h. & torres, r. t. ( ). evaluative inquiry for learning in organizations. thousand oaks, ca: sage publications. preskill, h., torres, r. t., & martinez-papponi, b. ( ). assessing an organization’s readiness for learning from evaluative inquiry. paper presented at the american evaluation association annual conference. orlando, fl, november. torres, r. t., preskill, h. & piontek, m. ( ). evaluation strategies for communicating and reporting: enhancing learning in organizations. second edition. thousand oaks, ca: sage. preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. table . reliability data for the role instrument dimension/subcategory number of items coefficient alpha   culture - collaboration and problem solving - risk taking - participatory decision making . . .   leadership .   systems and structures - open and accessible work environment - rewards & recognition system and practices - relationship of work to organizational goals . . . communication of information - availability - dissemination . .  teams .  evaluation .  all likert scale items . (cronbach’s alpha) preskill & torres – version . , rev. /  hallie preskill, claremont graduate university & rosalie t. torres, torres consulting. all rights reserved. the readiness for organizational learning and evaluation instrument (role) mean scores culture leadership systems & structures   communic ation  teams (if answered “yes,” to items - ) if answered “no”, skip this column) evaluation  collaboration & problem solving . open & accessible work environment availability . . . . . . . . . . . . . . . . . . . . . . . subtotal mean . . . . subtotal mean . . . . rewards & recog. systems & practices . . . . . dissemination . . . . . . . . . . . . . . . . . . .  subtotal mean .  subtotal mean relationship of work to org. goals subtotal mean  risk taking . . . . . .  subtotal mean . .  subtotal mean participatory decision making . . . . . . . . . .  subtotal mean total mean score total mean score total mean score total mean score total mean score total mean score appendix c grounded theory data analysis concepts are the main unit of analysis in the grounded theory method. the following illustrates examples of the grounded theory method followed in this study. one concept, collaboration, is highlighted as an example to demonstrate some of the ways concepts were scrutinized, noting all concepts were similarly analyzed. analysis prior to conceptual coding  i practiced coding with two different data analysis software programs before deciding to use nvivo after confirming its ease for coding and having learned at the canadian evaluation society annual conference nvivo meets industry standards.  each interview was conducted days after initial contact with the participant.  each interview was transcribed within days after the interview was conducted.  each transcript was coded as soon as possible after transcription. open coding  transcripts were open coded line by line using nvivo software within days after interviews were transcribed.  for some open codes memos were entered documenting my thoughts.  transcripts were open coded in the order that the interviews were conducted (at the biomedical site, bm then bm ).  open coding of transcripts and documents involved assigning descriptive codes to all data.  transcripts from a given site were first open coded, followed by open coding of documents from that site.  open coding of documents was done by hand (without nvivo software). this was mainly because there were few documents. documents were assigned open codes describing what was being said in respective sections of the data.  a file of all codes was saved after open coding of transcripts and documents at the site.  coding followed the same process at the other three sites in the order that the interviews were conducted, l , l and l from the labour site, bpsy and bpsy from the bpsy site, and then i and i from the insurance site.  i returned to the raw data and open codes from prior sites during analyses of all data from subsequent sites, to clarify open coding that existed and to decide whether a new open code or previously created code would be appropriate. analysis of open codes  a file of open codes was saved after open coding of data from all four sites (listed in appendix c of this document).  after coding of raw data i created a visual display of all open codes. to do this each open code was printed on a separate slip of paper, and all were organized into groups based on how they related to each other. (examples of these groupings are listed in appendix d of this study.)  this visual display contributed to clarification of open codes, providing an initial understanding of ways codes related to each other.  some open codes were straightforward, for example describing clients or describing the disability management programs. i referred to these descriptive codes as concrete.  other open codes led me to undertake initial levels of more abstract analyses of what was being said by different participants and at different sites. this led to my initial understanding that some open codes and groups of open codes were more abstract than simple descriptions that i referred to as concrete.  awareness of the potential for more abstract interpretations of data and open codes led me to new expectations for conceptual coding. i gained awareness of ways that conceptual coding would be more abstract, and would enable more nuanced analyses and understandings than simple descriptors.  an example was the open code ‘bias overcome’ that i understood would require a more conceptualized understanding. conceptual coding order of conceptual coding  conceptual coding of transcripts and documents at each site was conducted in the same order that open coding had been conducted.  conceptual coding of interview transcripts from each site was conducted using nvivo software.  transcripts from each site were conceptually coded in the order the interviews were conducted, then documents from the same site were coded.  conceptual coding of the documents from the same site was conducted by hand (without nvivo software).  conceptual coding of data from the labour site followed conceptual coding of data from the bm site, then the bpsy site, and finally the insurance site. conceptual coding processes  familiarity of data within transcripts and documents that had been gained during the processes of interviewing, transcribing and open coding acted as an advance organizer for conceptual coding.  coding of documents involved reading data and identifying sections that pertained to a particular concept and assigning conceptual code names to the section.  nvivo coding involved reading transcripts line by line to identify sections that pertained to a particular concept, highlighting the section, and assigning a conceptual code name to the section.  nvivo software enabled selection of prior conceptual code names or creation of new conceptual code names for every excerpt of data selected from a transcript.  i triangulated information from the multiple sources of data (transcripts, documents and role results) to identify conceptual codes. nvivo computer code files  nvivo software retained a separate file for each conceptual code that had been created.  each nvivo code file included all excerpts selected from all transcripts for that code. example of a nvivo computer code file for the concept ‘collaboration’ concept collaborative <internals\interviews\i concept> - § reference coded [ . % coverage] reference - . % coverage i yes so what we do is when we have our conference calls if there is something in particular that someone has taken i will ask them if they want to talk for minutes about what they learned. when we meet biannually then what will happen is if anybody from january to june if anybody has gone to a conference or if anybody has taken any particular courses then what i ask them to do is to put together a to minutes usually a minute presentation for all of the investigators. so they will discuss with them what they learned and what the benefits were as far as work is concerned. <internals\interviews\ bpsy concept> - § references coded [ . % coverage] reference - . % coverage bpsy and they have almost have never known there was a vr department in their ltd carrier. so we usually do that, um call the ltd carrier on their behalf and request that they be transferred to the voc rehab department. we always do that right. reference - . % coverage bpsy yah we used to be silod. and be attached to programs, but we couldn’t do that with our small numbers effectively so we went to a consultative kind of approach. where we now have to have the skill sets for every type of disability. which has its pros and cons. <internals\interviews\bm concept> - § reference coded [ . % coverage] reference - . % coverage bm it is important with [bm ] because often we provide the same service um that we are seen as consistent. we work under the same roof. but he also has to produce something that looks very very similar to me. so often we will talk about you know what we would see a certain situation file:///c:/users/hp-desktop/appdata/local/patricia/documents/e a -c - d- cd-ec ad file:///c:/users/hp-desktop/appdata/local/patricia/documents/ b d a- d- f f-b cd-ad cd bcc a file:///c:/users/hp-desktop/appdata/local/patricia/documents/ f d dc-f e- e c-b cd-ad c c a e what we would do. we are always right next to one another. so of course there is an ongoing consultation between the two of us. some things i have learned, so we always share. <internals\interviews\bpsy concept> - § references coded [ . % coverage] reference - . % coverage bpsy well you would often have um quite a collaborative model, and i really appreciated that. so if i was working with someone for example and i um…. i was supposed to be working with somebody who had a spinal cord injury for example. but i noticed cognitive issues. i was concerned about the mechanism of injury and the you know the whole presentation of the worker, i could take that person back to the team and suggest in my notes i am thinking there is …so i could suggest okay you know this person might have a cognitive issue, a brain injury that we have missed. let’s have somebody do a neuro psych or let’s have the team, the brain injury team look at this guy. or the neurosurgeon or who ever do a consult to talk about the situation because…or, similarly if um in a drug and alcohol session somebody was talking about you know their hopelessness and their problems with alcohol and how it related to their the job they were trying to get back to and maybe they should be in a different job, the drug and alcohol guy might say you know you really should be talking with a vocational person about this. matt is just down the hall, do you want to talk to him? and so we would get cross pollination i called it where we would have that freedom… reference - . % coverage bpsy yes he was a high quad. so he had the highest cervical injury you can have. just below the atlas bone. so i think it was c or c spinal cord injury. and the so all he can do is move his head and use a sip and puff. but he went from vent dependent to out in the community, married his nurse, adopted two kids, started two businesses, became a mentor, joined a bunch or organizations as a board of directors member, became a fabulously connected, and public speaker, you know disney wants to do a movie on his life. the guy is a really amazing guy. and he is the head of peer mentors there in terms of spinal cord injuries. he is one of the best counsellors i have ever met. peer counsellors. but no official training, his life has been his training. and it was interesting because we would sit around the discharge meeting. we would have the physio, the ot, the doctor, the nurses, the voc rehab, the sexual health, the spiritual care person, the drug and alcohol person if they were required. you know all those people were there. and the different people that provided services interacted. and then we had this peer mentor spinal cord injured fellow who had the least education in the room, sometimes less education than the client. but he had the most to teach in terms of life experience with a spinal cord injury. an amazing fountain of knowledge and wisdom in terms of how to manage spinal cord and how to live with the consequences of the changes. because his the consequences to his life were so profound. and he had moved through them so well. reference - . % coverage bpsy yes and i think that often times with the different levels or the different kind of training, because there was lots of cross training, um you know one of the things that was really fantastic i hadn’t mentioned, we had an art therapy group. and so the vams group was a group of rock and roll file:///c:/users/hp-desktop/appdata/local/patricia/documents/ f bbd-bf - - ecd-ec cf d that would come in and play music with folks. and so you would get these guys who have serious brain injuries but they put out an album. you know they actually wrote an album together. that’s an awesome therapeutic thing. the therapeutic department the rec department, because there was a whole department just based on rec. and sometimes the rec guys were so gung ho, you know they were extreme cyclists and extreme whatever, i mean we had i remember a spinal cord injured guy who um a great guy, the last day of his in patient program, he had been in the program i think it was six months or a year, and he wanted to do something big and symbolic on the last day. and so he decided to go parachuting. and he was strapped to another guy. and they and so the able bodied jumped out of the plane, and they hadn’t quite worked out all the details as well as they could have, and this guy was tied onto this other fellow’s chest. i think they were back to chest. and um you know he had just gone through this very expensive program, i think it is $ a day in a traction bed in the acute phase. <internals\interviews\i concept> - § references coded [ . % coverage] reference - . % coverage i i don’t….well if it is, it is individual. and i don’t know about that because the majority of the senior investigators you know they are quite able to pick up the phone and contact people. what you have here however, is that within this group there is a percentage of senior level investigators who know what is going on if you will, and how to do things. so they know which individuals to contact that have the information or the intelligence by that i mean knowledge, to assist them with their problems. some of the newer people don’t have that background they don’t know the senior officers, uh, and are blissfully ignorant quite honestly. researcher well the older ones are mostly from policing background. i that is right. researcher and what are the newer ones from? i some mixture of government employees, maybe one or two from police force but not necessarily the canadian police force, things like that. so out of the loop so much of this work is based on contacts and you know past experiences and intelligence of what is happening out there. researcher so there isn’t too much consistent collaboration among the twelve people. i i would say none, not any more. researcher none, not any more? did there used to be? file:///c:/users/hp-desktop/appdata/local/patricia/documents/ bb - fcb- -b cd-ec bd e i yes. reference - . % coverage i well you know again, i mean employees can be asked for opinions and suggestions, but if they are not acted upon pretty soon people stop making suggestions because they feel their opinions are meaningless. total conceptual codes created  a total of conceptual codes were created after conceptual coding of all nine interviews and documents from all four sites. conceptual codes accurate information, adapting, bias, client satisfaction, collaboration, communication, culture, diversity, feedback, formal evaluation, funding, goals, integrity (in vivo code), learning, meaningful evaluation, performance based model, qualifications, rapport, reports, self evaluation, standards, stigmas. analyses of conceptual codes  following conceptual coding i returned to reviewing the transcripts, documents and nvivo conceptual code files multiple times comparing data to data, data to codes, and codes to codes.  i conducted constant comparisons of data, codes, and the literature  i analyzed whether data had been missed that should have been included within one of the conceptual codes, or whether additional conceptual codes had been missed and should be created.  i categorized the open codes under the conceptual codes to compare open codes to conceptual codes.  i identified conceptual codes that should be collapsed and new conceptual codes that should be added. (examples of collapsing and adding new conceptual codes was illustrated in a figure in chapter of this study.)  i created memos based on the conceptual codes.  an example of a memo based on the conceptual code ‘collaboration’: ( ) consistency ( ) to standardize products of service -with other professionals in the organization -with other professionals in program -with learned experience clients -conference calls and presentations -with other organizations ( ) defer to other specialists ( ) knowing when to collaborate versus work alone  i continued constant comparisons of: conceptual codes to each other, to open codes, to the data, to role results, to the research questions, and to the literature.  patterns among codes emerged.  i hypothesized ways codes could be categorized together in meaningful ways related to disability management evaluation and learning.  themes began to emerge from the code groupings.  this process clarified how some of the concepts were more important than others to understanding disability management evaluation. selection of concepts important to the emerging themes  of the original conceptual codes were considered robust in relation to the emerging themes and were retained: adaptation, bias, client satisfaction, collaboration, communication, culture, diversity, evaluation criteria, feedback, learning, reports.  two open codes were elevated to concepts as their importance to the emerging themes became evident: cost savings, timeliness  three new concepts from the original data were coded as concepts as their importance to the emerging themes became evident: client functioning, data management, return to work methods to define the concept `client functioning` were considered. returning to the literature i recommended basing client functioning on the world health organization ( ) framework that had been created to describe and understand the components of functioning, disability, and health. testing themes  i identified clusters of codes and how they related to each other and hypothesized what stories they told.  five themes emerged by grouping the extant conceptual codes into categories that contributed to understanding disability management evaluation across the sites: ( ) evaluation criteria: client functioning, client satisfaction, cost savings, return to work, timeliness ( ) program context: collaboration, communication, culture, diversity, bias ( ) learning from evaluation: feedback, reporting ( ) data management ( ) adaptation  i created multiple visual displays of the codes and groupings to analyze how they related to each other.  i consulted a vocational rehabilitation consultant expert who provided feedback on my code groupings, themes, diagrams and hypothesized explanations related to disability management evaluation.  i created a table displaying `conceptual codes and themes` in relation to `the four disability management paradigms included in this study’ (included in chapter of this document). i analyzed the table hypothesizing relationships among the concepts and paradigms. the table illustrated concepts present or absent at each site, and rated whether their presence or absence bad been perceived by the nine participants as having been constructive or as having contributed to dissonance at the site.  differing evaluation priorities at the four sites was evident. for example, the bm and insurance sites prioritized evaluation criterion and standards measurements (i.e. timeliness of reports) whereas the labour and biopsychosocial sites tended to integrate pluralistic stakeholders’ perspectives gained through collaboration, communication and attention to culture and diversity.  i compared the themes to results of the role. interrelating analysis and theory building  i hypothesized inter-relating explanations of disability management evaluation based on analyses of themes across the four sites.  this included consideration of disability management activities, evaluation activities within programs, and interactions between programs and their contexts. collaboration  collaboration was identified as a core theme as its presence or absence was hypothesized as having he potential to contribute significantly to an understanding of variability within disability management evaluation.  i hypothesized that the concept communication contributed to and should integrated under the concept collaboration.  collaboration and learning were analyzed in light of the role findings. context  understanding how programs responded to contextual influences was identified as a core theme having potential to contribute significantly to an understanding of variability within disability management evaluation.  contexts of disability management programs were analyzed according to the five factors suggested by rog ( ) for context analysis. contexts of: the problem being addressed; the interventions being examined; the broader environment or setting; the evaluation context; the decision making context. evaluation procedures  five main evaluation criteria were identified: client functioning, client satisfaction, cost savings, return to work and timeliness.  disability management programs were increasingly using technology to develop data management systems that could be used for future research. theoretical perspectives  to further a theoretical understanding of disability management evaluation, evaluation at the four sites was examined with respect to evaluation theories in general, and with respect to the logic of evaluative inquiry.  evaluation theory across the four sites mainly emphasized use of findings, with secondary concern given to the pluralistic values of multiple stakeholders.  the logic of evaluative inquiry across the four sites mainly followed a consumer approach. the bpsy site also followed connoisseurship and pluralist approaches. appendix d open codes bias overcome biomedical model site biopsychosocial model site claims managers highest stress client credibility client summative evaluation of program camaraderie among clients communication with external stakeholder consultants to programs contributing new evidence cost effectiveness of program cultural issues cultural labour relations roles and issues cultural psychological disability culture political limited funding define clients for this organization define disability for this organization define service provided by this organization disabled dm counsellors evaluation needs assessment evaluative criterion fraud example gender how participant knows program is doing what was intended impartiality insurance model site integrity (in vivo code) introspection labour joint union management labour model site labour model limited information on disability learning multidisciplinary cross pollination multidisciplinary early intervention multidisciplinary risk taking non disability management work of programs non validity obtaining employer input participant criterion of program services participant description of program participant evaluation of their program services participant formative evaluation of their program services participant learning from client feedback surveys participant opinion new computer system interferes participant qualifications participant suggested disability management evaluation criterion participant summative evaluation of their program service participant training nidmar return to work coordinator participant program evaluation background participant’s role in the organization peoplesoft disability management record keeping software performance based evaluation political limited funding preventative aspect of disability management programs problem solving problem with increased temporary workers program clients program situation within organization referring organization communication with participant program referring organization criterion for program services referring organization formative evaluation of the program referring organization summative evaluation of the program referring sources reporting evaluation findings role role – open and accessible work environment role – area needing improvement role – collaboration and problem solving role – decision making role – strengths from organizational learning setting specific behavioural objectives sharing personal beliefs social learning copying standards of others for reports stigma surveillance survey timeline of disability management for services program provides validity weekly statistical summary of services provided who is responsible for evaluating your program appendix e groupings of open codes from the visual chart descriptions of the disability management sites . participant description of program . define service provided by this program . define disability for this program . program clients . define clients for this organization . program situation within organization . referring sources . participants role in organization . participants pe background . who is responsible for evaluating your program . how participant knows program is doing what was intended . participant evaluation of their program services . participant suggested dm evaluation criterion . participant formative evaluation of their program service . participant summative evaluation of their program service . client summative evaluation of program . participant learning from client feedback surveys . cost effectiveness of program the role learning problem solving role – open and accessible work environment role – area needing improvement role collaboration and problem solving role decision making role strengths from organizational learning external evaluation of the biomedical model site referring organization criterion for program service referring organization communication with participant program referring organization formative evaluation of program referring organization summative evaluation of program organizational cultural issues culture psychological disability problem with increased temporary workers participant opinion new computer system interferes claims managers highest stress labour model limited information on disability cultural labour relations roles and issues [pdf] f-fdg pet/ct for monitoring of treatment response in breast cancer | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /jnumed. . corpus id: f-fdg pet/ct for monitoring of treatment response in breast cancer @article{avril ffdgpf, title={ f-fdg pet/ct for monitoring of treatment response in breast cancer}, author={s. avril and r. muzic and d. plecha and b. traughber and s. vinayak and n. avril}, journal={the journal of nuclear medicine}, year={ }, volume={ }, pages={ s - s} } 	s. avril, r. muzic, + authors n. avril 	published 	medicine 	the journal of nuclear medicine changes in tumor metabolic activity have been shown to be an early indicator of treatment effectiveness for breast cancer, mainly in the neoadjuvant setting. the histopathologic response at the completion of chemotherapy has been used as the reference standard for assessment of the accuracy of f-fdg pet in predicting a response during systemic treatment. although a pathologic complete response (pcr) remains an important positive prognostic factor for an individual patient, a recent… expand view on publisher jnm.snmjournals.org save to library create alert cite launch research feed share this paper citationsbackground citations methods citations results citations view all figures, tables, and topics from this paper 	 figure 	 table 	 figure 	fluorodeoxyglucose f 	mammary neoplasms 	functional discourse grammar 	neoadjuvant therapy 	radiology 	pet therapy 	triple negative breast neoplasms 	prognostic factors 	subtype (attribute) 	stratification 	systemic therapy 	histopathology 	polymerase chain reaction 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f-fluciclovine pet/ct for determining the response to neoadjuvant therapy in invasive ductal and invasive lobular breast cancers 	g. ulaner, d. goldman, + authors m. dickler 	medicine 	the journal of nuclear medicine 	 	 	pdf save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency response to therapy in breast cancer 	n. avril, s. sassen, r. roylance 	medicine 	journal of nuclear medicine 	 	 	pdf 	view excerpt, references background save alert research feed early prediction of response to chemotherapy in metastatic breast cancer using sequential f-fdg pet. 	j. dose schwarz, m. bader, l. jenicke, g. hemminger, f. jänicke, n. avril 	medicine 	journal of nuclear medicine : official publication, society of nuclear medicine 	 	 	pdf 	view excerpt, references background save alert research feed prognostic relevance at  years of the early monitoring of neoadjuvant chemotherapy using f-fdg pet in luminal her -negative breast cancer 	o. humbert, a. berriolo-riedinger, + authors f. brunotte 	medicine 	european journal of nuclear medicine and molecular imaging 	 	 save alert research feed assessment of response to endocrine therapy using fdg pet/ct in metastatic breast cancer: a pilot study 	n. mortazavi-jehanno, anne-laure giraudet, + authors j. albérini 	medicine 	european journal of nuclear medicine and molecular imaging 	 	 	view excerpt, references background save alert research feed glycolytic activity with f-fdg pet/ct predicts final neoadjuvant chemotherapy response in breast cancer 	a. vicente, m. c. mora, + authors Á. castrejón 	medicine 	tumor biology 	 	 save alert research feed is f-fdg pet accurate to predict neoadjuvant therapy response in breast cancer? a meta-analysis 	y. wang, c. zhang, j. liu, g. huang 	medicine 	breast cancer research and treatment 	 	 	view excerpts, references methods and background save alert research feed her -positive breast cancer: f-fdg pet for early prediction of response to trastuzumab plus taxane-based neoadjuvant chemotherapy 	o. humbert, a. cochet, + authors f. brunotte 	medicine 	european journal of nuclear medicine and molecular imaging 	 	 	view excerpt, references background save alert research feed baseline tumor f-fdg uptake and modifications after cycles of neoadjuvant chemotherapy are prognostic of outcome in er+/her − breast cancer 	d. groheux, a. sanna, + authors e. hindie 	medicine 	the journal of nuclear medicine 	 	 	pdf 	view excerpt, references background save alert research feed changes in f-fdg tumor metabolism after a first course of neoadjuvant chemotherapy in breast cancer: influence of tumor subtypes. 	o. humbert, a. berriolo-riedinger, + authors f. brunotte 	medicine 	annals of oncology : official journal of the european society for medical oncology 	 	 	 save alert research feed positron emission tomography using [ f]fluorodeoxyglucose for monitoring primary chemotherapy in breast cancer 	m. schelling, n. avril, + authors m. schwaiger 	medicine 	 	 	view excerpts, references results save alert research feed ... ... related papers 	abstract 	figures, tables, and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue lecture presentation open access pet therapy and geriatrics: a social-sanitary connection a pugliese *, l famulari , d britti from de senectute: age and health forum catanzaro, italy. - december background the pet therapy has effective intervention strategies to treat psycho-physics pathologies as well to improve life quality. animals represent ethereal molecules capable of stimulating the release of neurotransmitters and various endogenous peptides with several mechanisms of action, mainly of emotional type, that promote an interconnec- tion between affective and biological spheres, modifying the neuro-endocrine axis, and determining, through the biochemical-nervous pathways, the attainment of a state of well-being: eucenestesis. the aim of pet therapy is to ameliorate the state of well-being of some classes of patients and, among those, elderly people that, by means of contact with pets, experience a state of well- being connected to: • biological mechanisms: activation of specific neuro- transmitters produce a rise in the level of endor- phins, a decrease in the levels of adrenalin and corticosteroids, and a decrease in the activity of cho- linergic system; • affective-emotional mechanisms (i.e. soul expres- sions): in men and superior animals neurons that fire both when the subject completes an action and when observes others that do the same action (mir- ror neurons) have been identified; • physical mechanisms: responsible for the psycholo- gical boundary establishment of one’s own identity, one’s own self, and one’s own existence; • psychological mechanisms: by means of pets, man develops interpersonal relationships; • associated mechanisms: single mechanisms interact with each other in a synergistic way and, thanks to factors that reduce the feelings of alienation and iso- lation such as the communication with other people, the recall of memories, the entertainment, and the play, determine a cerebral stimulation. the contact with pets is also effectual on behavioral parameters reducing excitement, stimulating creativity, curiosity, and observational ability; and on affectivity ame- liorating depression and anxiety. besides age-associated pathologies (i.e. hypertension, diabetes, cardio- and broncho-pathies), elderly people show discomforts (i.e. retirement, and consequent loss of the social position, mourning and/or stressful events, home change, hospitali- zation in old’s people home, loss of social and emotional entourage) that cause an increase of anxiety, depression, and physiologic cognitive impairment. conclusions the use of pets in geriatrics represents a proper true drug both in the prevention and in the therapy of pathological conditions that require long hospitalization periods such as mental impairment due to old age and alzheimer’s. author details pet therapy center, university of messina, , italy. department of clinical and experimental medicine, university of catanzaro “magna graecia”, , italy. published: may references . pugliese a: pet therapy strategie d’intervento e linee guida. armando editore , . . kongable lg, buckwalter kc, stolley jm: the effects of pet therapy on the social behavior of institutionalized alzheimer’s clients. arch psychiatr nurs , : - . doi: . / - - -s -l cite this article as: pugliese et al.: pet therapy and geriatrics: a social- sanitary connection. bmc geriatrics (suppl ):l . pet therapy center, university of messina, , italy pugliese et al. bmc geriatrics , (suppl ):l http://www.biomedcentral.com/ - / /s /l © pugliese et al; licensee biomed central ltd. http://www.ncbi.nlm.nih.gov/pubmed/ ?dopt=abstract http://www.ncbi.nlm.nih.gov/pubmed/ ?dopt=abstract 	background 	conclusions 	author details 	references assessment of healing environment in paediatric wards procedia - social and behavioral sciences ( ) – - © published by elsevier b.v. selection and/or peer-review under responsibility of centre for environment-behaviour studies(ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia doi: . /j.sbspro. . . aice-bs kuching asia pacific international conference on environment-behaviour studies, grand margherita hotel, kuching, sarawak, malaysia, - december assessment of healing environment in paediatric wards roslinda ghazali* and mohamed yusoff abbas centre for environment-behaviour studies (ce-bs), faps, universiti teknologi mara, malaysia abstract malaysian paediatric wards were assessed on their quality status and design trends towards creation of the healing environment. the objective was to promote best practices. post-occupancy evaluation (poe) studies were conducted upon paediatric wards in eight hospitals in the klang valley. methodology adopted uk’s nhs aedet and aspect evaluation toolkits, which evaluated the physical qualities and staff & patients’ satisfaction levels respectively. those involved nurses and patient’s questionnaires respondents, personal on-site observations, and photographic documentations as supplementary evidences. results seemed to show the disparity between the positivity of the physical design in relation to users’ satisfaction. implications of the findings are discussed. © published by elsevier ltd. selection and peer-review under responsibility of centre for environment- behaviour studies (ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia. keywords: healing environment; paediatric wards; methodology; evaluation . introduction interest on healing environment backdated since about , years ago, but was in different approaches, such as holistic and spiritual, whereby it was more commonly termed as complementary or alternative medicine (huelat, ). currently, there has been a sudden increase in global interest towards creation of the healing environment (ananth, ). in malaysia, the initiatives had been * corresponding author. tel.: - - ; fax: - - . e-mail address: lindakeruing@gmail.com, myusoff @salam.uitm.edu.my available online at www.sciencedirect.com © published by elsevier b.v. selection and/or peer-review under responsibility of centre for environment- behaviour studies(ce-bs), faculty of architecture, planning & surveying, universiti teknologi mara, malaysia open access under cc by-nc-nd license. open access under cc by-nc-nd license. http://creativecommons.org/licenses/by-nc-nd/ . / http://creativecommons.org/licenses/by-nc-nd/ . / roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – envisioned by the health ministry since the s for a more child-friendly, cheerful and safe hospital (mathews, ). “healing environment” can be described simply as the overall environment (both physical and non- physical) created to aid the recovery process. in contrast to curing, healing is a psychological and spiritual concept of health. since perception is also psychological, there is a likelihood of a relationship between healing and the physical environment. also, as the paediatric population tended to be more sensitive than adults in the perception of the environment (ozcan, ), this paper posits that the quality of paediatric wards could greatly influence the recovery process of the paediatric population. has the ’s vision of the malaysian health ministry been transformed into reality? the present study assessed the design trend towards creation of the healing environment in malaysian paediatric wards. the purpose was to identify whether factors, facilities and provisions in terms of the physical qualities towards the creation of such environment were given due to considerations in relation to users’ satisfaction levels in the design of those wards. it also attempted to identify possible problems that might have impeded towards achieving such environment. the objective of the study was to promote best practices as a guideline for designer to enhance further the creation of a more conducive healing environment, not only for the design of new wards, but also in improving existing wards. . literature review the literatures reviewed concerned the healing environment framework and supporting evidences of the role of the physical environment towards the creation of healing environment. . . healing environment framework in the united states, the samueli institute, a medical research organization exploring the science of healing has developed the “optimal healing environment” (ohe) which it described as “the social, psychological, physical, spiritual, and behavioral components of healthcare support and stimulate the body’s innate capacity to heal itself” (ananth, , p. ). the approach involved both the inner and outer environment comprising of seven components as shown in figure . the inner environment comprised three components - developing healing intention, experiencing personal wholeness and cultivating healing relationship, while the outer environment comprised the other four components - practicing healthy lifestyles, applying collaborative medicine, creating healing organization, and building healing spaces. the ohe framework provided a wholesome and inclusive approach towards the healing process. however, both the present authors (of architectural background) opined that the ‘building healing spaces’ component, the focus of the present study required further modification and refinement. the ohe modified version framework proposed, which also formed the framework of the present study is as shown in figure . in the modified model, architecture comprises both interior and exterior environments, with the various influencing factors towards healing being sub-categorised accordingly under those environments. those previously identified elements not only contributed towards the healing process but also helped the pediatric patients to cope with pain and aggression. this was concurred by the national association of children’s hospitals and related institutions (nachri) where it revealed that the physical environment of healthcare settings affected the clinical, physiological, psychosocial, and safety outcomes among child patients and families (oberlin, ). roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – fig. . the optimal healing environment (ohe) framework. source: sita ananth, healing environments: the next natural step, explore, vol. , no. , p. , ( ) fig. . modification from ananth’s ( ) optimal healing environment . . . interior environment elements within the interior environment towards the creation of a healing environment include safety, ergonomics, colour, artwork, lighting, view to outside, furniture and furnishings, ambience and therapies. the creation of a much safer environment in paediatric wards had been raised by many authors. for example, scanlon et. al., ( ) stressed that due to their nature, children during the pediatric age range architecture exterior interior garden playground artwork sound ergonomic natural lighting artificial lighting ambience lighting artwork safety art therapy music therapy aromatherapy pet therapy colour outdoor view roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – were more dynamic than the adults and hence characterised many different features which resulted in more potential risks for harm amongst pediatric patients during medical care. similarly, woods, et. al. ( ) cautioned that patient-specific setting increased vulnerabilities and as such patient safety risks must be accounted for in the design and improvement interventions. earlier, miller and zhan ( ) revealed that events affecting patients’ safety frequently involved the very young with substantial increase in their duration of stay. directly related to safety is the ergonomic considerations for the paediatric patients. the related implications had concerned many because the requirements of the children were not the same as the adults as detailed out by lueder ( ) in the many differences of the physical built of children as compared to adults. furthermore, children were in continuous development - physically, perceptually, cognitively and socially (lueder and rice, ). croasmun ( ) argued that often products or services might have been designed without sufficient knowledge of the end users. as such, improved ergonomics by designing out potential flaws before the occurrence would make a safer setting for the paediatric patients and better environment for the medical carers. as such, france, et al. ( ) opined that human factors expertises were needed to be involved early in the design process. park ( ) investigated the value of colour in real contexts by measuring preferences amongst healthy children, paediatric patients and design professionals. he found that the use of more eventually created better environments for children and their families. colours and artwork in children’s hospital also provided a more cheerful environment hence, contributed towards the paediatric patients’ healing process as revealed by several other studies conducted for example by eisen ( ). daykin ( ) also found that exposure to art in healthcare environments reduce anxiety and depression beauchemin and hays ( ) revealed that a bright light is an effective therapy used as treatment of depressive illness. he also found that patients warded in bright and sunny rooms experienced shorter period of stay compared to those in dull rooms. dutro ( ) found that patients experienced less stress and exhibited less anxiety in the room with the backlit light image mounted in the ceiling containing nature art. in addition, ulrich, ( ) revealed that patients with windows heal faster than patients without outside view. moran ( ) discovered that hotel-like elements that emphasize hospitality and comfort could reduce anxiety and promote healing. the ambience should be as personal as possible such as homelike environment. similarly, the effect of furniture arrangements in the activity room could promote improvements in the wards' psychosocial atmosphere, as reported by baldwin ( ). various therapies have proven to aid healing. those include art therapy, music therapy, aroma therapy and pet therapy. the art therapy as a healing psychotherapeutic demonstrates the impact on the well-being of patients and staff in mental healthcare settings. research done such as by malley ( ) proved to be an effective intervention in coping with ongoing physical, social, cognitive, emotional and psychological squeal of the accident/trauma. several studies done such as by evans ( ) and cooke, et al ( ) found that music is a simple and cost effective intervention in the hospital which decreased anxiety experienced while patients undergo their invasive investigation, treatment, procedures or surgery. other effects included on positive behavioural effect amongst hospitalized children (robb , ), helped paediatric patients to heal faster (kennelly, ), reduced stress levels and benefited not only paediatric patients but also others in the wards (stewart ( ). meanwhile, stouffer, et al. ( ) suggested the use of music as therapy in the paediatric practice guidelines in order to promote in the healing process. roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – studies such as by bonadies ( ) found that pleasant aroma in the hospital can improve health and enhance well-being, particularly to decrease stress and anxiety levels of parents who accompany their children in waiting area of an emergency department. in relation to pet therapy or the use of animal-assisted interventions, braun, et al. ( ) revealed that the improved blood pressure, heart rate, and salivary immunoglobulin benefited less depression and anxiety, decreased in tension, fatigue and inertia, and also improved the overall mood. . . . exterior environment exterior or outdoor environment that could contribute towards the healing environment involved nature and the outdoor children’s playground. the role of nature or the creation of therapeutic gardens towards the healing process had been reported by several studies. for example, whitehouse, et al. ( ) revealed that garden features in order of users’ preferences included the sound of running water, followed by presence of bright colours, flowers, artwork, and the opportunity for multisensory stimulation. they also found that very young paediatric patients who were hospitalized for a longer duration or those with physical or developmental disabilities were responsive and appreciative to such gardens. they recommended in the creation of potential activities that could be done in the gardens by the different users, such as outpatient or the patients’ healthier siblings. similarly, sherman, et al. ( ) observed the gardens were used differently according to the category of users or their age group. while the most used was the largest garden with direct patient access, children more than adults interacted with the garden features. they also found that emotional distress and pain were lower for all groups when in the garden as compared to in the hospital. similar findings were also reported locally by said ( ). in addition, nachri ( ) concluded that those gardens could help reduce patients’ anxiety. in a survey which involved hospital staff, parents and visitors, about perceptions and their experience of a playgarden - an integration of playgrounds and healing gardens located in a pediatric hospital - turner ( ) revealed that children who played in the playground strongly benefited health wise. he recommended that the physical environment between indoor and outdoor activity be accessible at all times. also, the play garden should not only provide space for patients and their families, but also for staff to interact with each other in a park. he also suggested that the play garden should include a variety of approaches. annunziato ( ) emphasized on features like a river that flows along the window wall which included trees, native plants, and whimsical animal sculptures could help ease the fear of children and provide a space for siblings to play, as well. the evidence by annunziato is to ensure that a sense of welcoming and playful environment appeared in the children’s hospital somehow could reduce patients and staff stress, improved patient safety and improved overall healthcare quality. . research design . . strategy the strategy involved post-occupancy evaluation (poe) upon paediatric wards in eight hospitals located in the klang valley in malaysia. the hospitals involved were strategically identified in terms of the year it was built which represented the design of the last three decades - the s, s and s. eight hospitals located both in urban and non-urban areas in the klang valley were chosen as the setting for the study as shown in table . it was envisaged that samples for such purposeful selection could depict the design trend of such building type through those previous decades. roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – table . hospitals involved based on the year built . . methodology methodology for data collection adopted uk’s nhs aedet evolution and aspect evaluation toolkits (dh estates and facilities, ,a, b). questionnaires, personal site observation and photographic documentation supplemented the toolkits’ evaluations. the aedet (achieving excellence design evaluation toolkit) evolution is part of a benchmarking tool which assisted in measuring and managing the design quality in the healthcare facilities. in terms of reliability, the aedet evolution includes references to evidence based design literature and this is related to the criteria used in the evaluation. in terms of validity, its use is mandatory in business case submissions for major capital development. it evaluates a design through a series of statements which encompassed the three areas. the impact area deals with the degree to which the building created a sense of place and contributed positively to the lives of the users and its neighbours. it involves four sections - character and innovation, form and materials, staff and patient environment, and urban and social integration. the build quality area deals with the physical components of the building rather than the spaces and involves three sections – performance, construction, and engineering. the functionality area deals with issues on the primary purpose of the building and involves three sections – use, access, and space. the aspect (a staff and patient environment calibration toolkit) measures the manner the healthcare environment can impact both on the satisfaction levels to patients, and provision of facilities to staffs. it evaluates eight sections - privacy, company and dignity; views; nature and outdoors; comfort and control; legibility of place; interior appearance; facilities; and staff. in terms of reliability and hospitals year area no of beds kg urban ip urban kj urban pa urban sg non-urban sd non-urban ag non-urban sb non-urban roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – validity, the aspect is based on a database of over pieces of research. the aspect evaluation, in the form of questionnaires assessed users’ satisfaction of both nurses and patients. an overall total of nurses and patients (aided by parents) responded to the questionnaires. personal site observation and photographic documentation of the wards’ ambience supplemented the information required to be filled in the aedet forms. in addition to the evaluation which used both the aedet and aspect toolkits, the personal site observation also made notations on the existence of the other theraphies mentioned earlier. . . . procedure prior to the site visits, consents were first obtained from the malaysian ministry of health and the directors of the hospitals identified through formal applications. preceded by initial briefings about the setup of the hospitals, representatives from the hospitals accompanied the site visits and provided responses to spontaneous general enquiries about the physical environment of the wards. data collected involved personal observations made with notations and photographic documentations about the facilities provided and on the overall ambience. the aedet evolution toolkits forms were then filled. visits to the hospitals were done once and lasted about hours per hospital. evaluation of aspect involved questionnaires distributed to staffs and patients’ carers in the wards. the staffs aided with the questionnaires distribution. questionnaires filled were collected later after duration of about four weeks. . . . delimitations the study was delimited to - beded paediatric wards, so that comparison could be made with the newer wards built which were limited to those number of beds due to current hospital policy. patients focussed were those ages between - years old. overall, eight public hospitals located in both urban and non-urban areas within the klang valley in the state of selangor were identified for the study. . . . limitations limitations of the research involved time constrains and questionnaires feedbacks from patients’ cooperation. prior to the data collection stage, time was constrained in getting approval from the health ministry due to having to meet the procedural compliances as set by the malaysian national medical research institute. questionnaires feedbacks from patients involved co-operation from the parents involved. while some of the parents were not interested with the questionnaires, others were not focused in giving their feedbacks. . findings and discussions the aim of the study was to assess the quality status and design trends of malaysian paediatric wards towards the creation of the healing environment. . . uk’s nhs evaluation toolkits . . . aedet evolution evaluation based on the aedet evolution evaluation upon the physical qualities of the eight wards, overall the findings seemed to reveal a positive trend towards the creation of a healing environment as shown in figure . amongst the most marked positive trends from the sections analysed were the staff & patient environment, and space sections. however, those that initially showed a positive trend but somehow declined were from the urban & social integration, and the access sections, while from were, the character & innovation, and form & materials sections. the performance section seemed to have roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – criteria . . . . . . . . . . . . . . . . . . . . kg(u)- ip (u)- kj (u)- pa (u)- legend: sg (nu)- score of & (below average) sd (nu)- ag (nu)- score of & (average) sb (nu)- score of & (above average) catogaries . views . nature & outdoor . comfort & control . staff facilities h o s p it a l s improved only from after being idled over the previous decades. not much change in trend was recorded in the use section. fig. . the aedet (achieving excellence design evaluation toolkit) evaluation- summary of findings . . . aspect evaluation feedbacks of satisfaction levels on provisions and facilities available from the questionnaire respondents involved in the eight wards were received from an overall total of staffs (nurses) and patients. feedbacks requested from staffs involved four main categories (with several criteria per category) - view to outside; nature & outdoor; comfort & control; and staff facilities. feedbacks requested from patients involved the first there categories, with the addition of four more categories – privacy, company & dignity; legibility of place; interior appearance; and facilities for users. results of the findings in the form of colour patterns to indicate their satisfaction levels for the staffs and patients are as shown in figure (a) and figure (b) respectively. fig. (a). the aspect (a staff and patient environment calibration toolkit) - summary of findings (staffs, n= ) fig. (b).the aspect (a staff and patient environment calibration toolkit) - summary of findings (patients, n= ) criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . kg(u)- ip (u)- kj (u)- pa (u)- sg (nu)- sd (nu)- ag (nu)- sb (nu)- catogaries . facilities for the users . views . nature & outdoor . comfort & control .privacy, company & dignity . legibility of place . interior appearance h o s p it a l s roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – legend: score of & (below average) score of & (average) score of & (above average) the aspect toolkit . . . . . . . . . . . . . . kg(u)- ip (u)- kj (u)- pa (u)- sg (nu)- sd (nu)- ag (nu)- sb (nu)- h o sp it a ls . view .nature&outdoor .confort&control the aedet toolkit kg(u)- ip (u)- kj (u)- pa (u)- sg (nu)- sd (nu)- ag (nu)- sb (nu)- h o sp it a ls e n v . u se s p ac e from the findings shown in figure (a), it seemed that the overall staffs’ satisfactory level were highest for the older kj(u)- hospital and followed by the newer ag(nu)- hospital. while it was not surprising for the oldest kg(u)- hospital to be rated the lowest, most surprising was the newest sb(nu)- hospital given below average rating in three categories – nature & outdoor, comfort & control and staff facilities. similarly, the patients’ satisfactory level were highest for not the newest sb(nu)- hospital but rather for the newer pa(u)- hospital, and then with continuous positive trends for the other newer hospital over the decades in only the three categories – legibility of place, interior appearance, and facilities for users, as shown in figure (b). in comparing the satisfactory levels between the staffs’ and the patients’ in the three categories – view to outside, nature & outdoor, and comfort & control, it seemed that overall, the patients were more satisfied than the staffs with the facilities and provisions, although not necessarily in correlations with the ascending years the hospitals were built. also, the findings evaluated in aspect (data collapsed for both staffs and patients) did not seem to tally with findings evaluated in aedet, whereby the overall physical qualities of the hospitals revealed a more positive trend as shown in figure (c). meaning, if the quality status and design trend of the wards were truly positive towards the creation of the healing environment, the trend of end users’ satisfaction level should have shown one of the increments in the progression of the decades. could have the other therapies mentioned earlier, played a major role towards the end users’ satisfaction and thus influencing the healing process? those were almost non-existent in all the newer wards, except for one of the older wards in the use of art therapy, where patients’ together with the nurses painted murals along the corridor. also, this study just focused only on one of the seven components in the ohe framework as shown in figure . hence, the other six components, which were not measured, could also have greatly influenced the satisfaction levels. interestingly, if both the aedet and aspect evaluations indicated a similar positive trend, than it can be argued that the physical environment component would be the most significant component as compared to the other six components in the creation of the ohe. since, that was not the case the findings further strengthened the contribution of the other six components in the creation of the ohe. fig. (c). correlation between the aspect and aedet evaluation toolkit roslinda ghazali and mohamed yusoff abbas / procedia - social and behavioral sciences ( ) – . conclusion from the analyses of the findings, based on aedet, the overall physical qualities and design trend of the wards over the last three decades seemed to be positive towards the creation of the healing environment. the trend however, seemed not to correspond with the satisfaction levels of the end users as was shown in the analyses from aspect. the aedet evaluations seemed to reveal the positive trend in physical qualities and design of the wards towards the creation of healing environment. however those did not seemed to correspond with the aspect evaluation which concerned the users’ satisfaction level. perhaps, the users’ satisfaction levels could have shown a more positive trend, if the other additional therapies - art, music, pet and aromatherapy – almost absent in all the wards, were provided in the newer wards. in addition, positive trends in the other six components shown in figure , excluded from this study could also have major influences positively upon the users’ satisfaction levels. in terms of the physical design of newer wards, as best practice, it is suggested that apart from understanding the behavioural needs of the end users, there should be inclusion of the other additional therapies - art, music, pet and aromatherapy - in the design brief. acknowledgement our heartiest gratitude to the malaysian ministry of higher education for the research grant awarded for this study. special note this paper was developed further from the paper published by the same authors, mohamed yusoff abbas and roslinda ghazali ( ), healing environment of pediatric wards, procedia - social and behavioral sciences, , , - , elsevier, available online september . earlier findings were revealed at the ace-bs , riverside majestic hotel, kuching, malaysia, - july , while the pilot study was presented at ncebs , shah alam, malaysia, - november . references ananth, s., ( ), healing environments: the next natural step, explore, ( ), annunziato, l., ( ), playful pediatrics, contract san francisco: ( ), baldwin, s., ( ), effects of furniture rearrangement on the atmosphere of wards in a maximum-security hospital, hospital and community psychiatry: ( ), - beauchemin, k.m and hays, p., ( ), sunny hospital rooms expedite recovery from severe and refractory depressions, journal of affective disorders: ( ), - bonadies, v., ( ), guided imagery as a therapeutic recreation modality to reduce pain and anxiety, therapeutic recreation journal. arlington: second quarter . 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semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /bmj.b corpus id: alzheimer’s disease @article{burns alzheimersd, title={alzheimer’s disease}, author={a. burns and s. iliffe}, journal={bmj : british medical journal}, year={ }, volume={ } } 	a. burns, s. iliffe 	published 	medicine 	bmj : british medical journal in this, the second of two review articles about dementia, we focus on alzheimer’s disease, which is the most common cause of dementia. dementia is a clinical syndrome characterised by a cluster of symptoms and signs manifested by difficulties in memory, disturbances in language, psychological and psychiatric changes, and impairments in activities of daily living. alzheimer’s disease is a specific disease that affects about % of the population aged over and increases in incidence with age… expand view on bmj bmj.com save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations results citations view all topics from this paper 	alzheimer's disease 	mental disorders 	paget's disease, mammary 	pharmacology 	primary health care paper mentions blog post being disagreeable shown to help fight alzheimer's disease age of engagement | big think march blog post cerebros profidén naukas february news article professor x's humanity is slowly killing him in 'logan' inverse march citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency alzheimer’s dementia: an overview 	abhinav nahar, ammu lukose, + authors n. rao 	medicine 	journal of the indian institute of science 	 	 	highly influenced 	view excerpts, cites background save alert research feed posterior cortical atrophy variant of alzheimer's 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scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators blog posts, news articles and tweet counts and ids sourced by altmetric.com terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue behavioral sciences article the effect of pet therapy and artist interactions on quality of life in brain tumor patients: a cross-section of art and medicine in dialog stefan petranek , jennifer pencek and mahua dey ,* herron school of art & design, indiana university-purdue university indianapolis, indianapolis, in , usa; spetrane@yahoo.com department of neurosurgery, indiana university, simon cancer center, indianapolis, in , usa; jpencek@goodmancampbell.com * correspondence: mdey@iu.edu; tel.: + - - - received: february ; accepted: april ; published: april ���������� ������� abstract: with the evolution of modern medical treatment strategies, there also comes the realization that many times we reach a point where traditional goals of medical care, such as overall survival or disease-free survival, are not realistic goals for many patients facing devastating illnesses. one such disease is malignant primary brain tumors, known as malignant glioma (mg). with median survival of only . months following best available standard of care treatment strategies, including surgery, chemotherapy, radiation, and tumor treating fields, mg is one of the deadliest malignancies of the modern era. along the course of treating patients with mg, clinicians often realize that traditional treatment therapies can at best provide incremental benefit of symptom management without any survival benefit. however, even in these difficult situations, it is possible to make significant positive changes in patients’ health-related quality of life (hrqol) using creative, non-traditional interventions. in this paper, we describe the initial findings from our project that takes a unique approach to studying the intersections of clinical care and art by using pet therapy and art-making as interventions for patients diagnosed with brain tumors. our preliminary findings suggest that pet therapy and the ability to reflect as well as speak about their journey through a life-altering disease significantly increases patients’ overall feeling of wellbeing and reduces anxiety about future uncertainty. keywords: brain tumor; malignant glioma; pet therapy; video art; photography; quality of life; cancer; artist; artistic engagement; art . introduction malignant gliomas (mg) are highly aggressive primary brain cancers with a very rapidly progressing clinical course despite aggressive treatment with best available treatment strategy [ ]. median survival is only . months with -year survival of only – % [ , ]. while the scientific community is working diligently toward a scientific breakthrough that will alter the clinical course of this disease, it is of equal importance to help patients suffering from this disease maintain a good health-related quality of life (hrqol). unlike end of life hospice care, palliative care is comprehensive treatment to ease the discomfort, symptoms and stress of serious life-threatening illness, such as cancer that can continue along with life prolonging treatments and follow-up [ , ]. integration of palliative care along with conventional oncological treatment has shown to significantly increase the quality of life of cancer patients [ , ]. over the last decade, hrqol has increasingly become an integral part of mainstream comprehensive treatment strategy for oncological care [ – ], which is reflected by the fact that almost % of all randomized cancer clinical trials include hrqol as one of the primary end behav. sci. , , ; doi: . /bs www.mdpi.com/journal/behavsci http://www.mdpi.com/journal/behavsci http://www.mdpi.com http://www.mdpi.com/ - x/ / / ?type=check_update&version= http://www.mdpi.com/journal/behavsci http://dx.doi.org/ . /bs behav. sci. , , of points [ ]. in addition, the us food and drug administration takes the hrqol benefit of any new anticancer drug into consideration for clinical approval. hrqol is a complex concept that has been historically hard to define in a standard manner; as such, it has been defined in many different ways in the literature with an overall common concept that encompasses the multidimensional wellbeing of a person in terms of their overall satisfaction with life [ – ]. due to the subjective nature of this domain, it has been hard to objectively measure this in a standardized manner across all patients, as well as interpret results from various studies and translate the findings into busy clinical practice [ – ]. over the last several years, use of patient-reported outcome (pro) questionnaires has emerged as a standard practice in the assessment of cancer patient hrqol [ , , ]. pros provide an assessment of a patient’s wellbeing that comes directly from the patient without the interpretation of the patient’s responses by a physician or other practitioner. it also incorporates disease symptoms description, patient functioning, and quality of life questionnaires [ – ]. some data that can only be obtained from patients using pros are: symptoms (such as headache, fatigue, anxiety, depression etc.), frequency and severity of the symptoms, and how the symptoms or the disease effect patients’ daily life etc. [ , , ]. patients with brain tumors face serious and unique challenges with neurologic and neuropsychological problems that are specific to the location of the tumor and just not the systemic symptoms of the cancer. brain tumor patients score significantly lower in all domains of functioning compared to age-matched and sex-matched healthy controls and have lower social functioning and more problems with vision, motor functions and communication, compared to patients suffering from other cancers [ , ]. current methodologies being used in the clinical setting for brain tumors involve hrqol questionnaires, proxy-rated hrqol measures, and measures of instrumental activities of daily living [ ]. in addition to focal neurologic deterioration, brain tumor patients face several unique challenges that make reporting of outcomes difficult. these include motor deficits, personality changes, cognitive deficits, aphasia, and visual field defects [ , ]. because of these neurological deficits, the use of standardized questionnaires may not be a reliable way to measure hrqol in this particular group of patients. meanwhile, studies analyzing the accuracy of caregivers to provide reliable proxy hrqol ratings showed that for cognitively impaired patients, caregivers do not report accurate hrqol ratings [ ]. in addition, various studies have shown that a large proportion of brain tumor patients suffer from mood disturbances such as anxiety and depression [ , – ]. more importantly, in some cohorts of primary brain tumor patients, depression was the most important independent predictor of quality of life and was found to have an adverse impact on survival [ – ]. thus, previous research indicates there is an unmet need for a better tool to asses hrqol in brain tumor patients; one that does not rely solely on the patient’s ability to communicate and interact clearly or depend on their caregiver’s proxy ratings. animal-assisted therapy is a growing field that typically utilizes dogs trained to be obedient, calm, and comforting to help people recover from or better cope with health problems such as cancer, mental illness, etc. several studies have reported significant pain relief after participating in therapy dog visits. objective reports of reduced pain and pain-related symptoms are supported by studies measuring decreased catecholamines and increased endorphins in humans receiving friendly dog visits [ – ]. there is a growing body of literature that shows that animals can reduce tension and improve mood. specifically in the setting of depression, along with traditional treatment modalities, pets can help people with mild to moderate depression feel better [ ]. pet animals have been used in a multitude of medical scenarios, and several recent studies have shown that animal-assisted therapy can significantly reduce pain, anxiety, depression and fatigue in cancer patients [ – ]. animal-assisted therapies that mostly involve interaction with trained therapy dogs have been used in adult and pediatric acute care hospital settings as well as in outpatient clinics, nursing homes and rehabilitation centers [ , – ]. in this paper, we describe our unique study that was designed to address two critical questions: ( ) can pet therapy in the outpatient setting help improve hrqol of brain tumor patients? and ( ) can patient’s facial expression be used as a proxy measure for their overall hrqol? the framework of this behav. sci. , , of study originated from the desire to explore and combine non-conventional modalities to overcome the limitations of conventional methodologies. since facial expressions are best captured by an artist’s lens, we combined pet therapy along with an artist’s involvement to address the questions. use of facial expression to measure patient’s wellbeing has never been tested in any clinical setting. moreover, there have never been any studies conducted using this approach of combining pet therapy and study of facial expression. we believe that collaboration between clinical research, art and related therapies could be symbiotic and produce useful scientific as well as artistic outcomes. the scientific goal of the study was to see if a short pet therapy session could improve a patient’s quality of life, as determined by their change in responses to the standard quality of life questionnaire (qol-c /bn ) before and after the session. in addition, still photographs were taken before and after the pet therapy session to assess if facial expression could be used as a surrogate to measure or infer hrqol. the artistic goal of the study involved taking excerpts of audio interviews and slow-motion video clips captured of the patients and creating a series of – min video portraits that were exhibited and shared with the public to tell the stories of patients affected by brain cancer. the video portraits served as a unique platform to showcase how it feels to face a lethal disease head on, and in doing so, remind the public to value the everyday opportunities and joys which life brings. one unexpected positive outcome that emerged early on from this study was the observation that patients having the opportunity to share their experience of living through a life altering disease with a non-medical person improved their quality of life. as reported by the patients themselves, the interaction with the artist through audio interviews and video portraiture, significantly enhanced patient’s quality of life. the approach of engaging an audience or a patient directly into the art-making process is referred to as participatory art. over recent years, there is evidence that points to the health benefits associated with participatory arts [ ]. involvement in participatory art in the form of expressive writing, music, dancing etc. not only improves overall wellbeing of patients, it also has positive impacts on specific health parameters such as depression, anxiety and immune system functioning [ , – ]. by incorporating interactive non-traditional therapy and artistic sessions with patients, the study sought to investigate if the integration of clinical care, pet therapy and art-making could positively impact the quality of life of brain tumor patients. thus, the study describes a novel way to incorporate unconventional therapies into overall patient care without disrupting the busy daily clinical workflow. . methods the clinical research nurse approached brain tumor patients, who meet the inclusion criterion of the study, for study consent. patients who consented to the study were invited to participate in a study session. upon arrival at the study session, patients were asked to complete the standardized qol-c /bn questionnaire. patients were then led into the studio room and met with the artist who introduced the goals of the project and took a series of still photographs and slow-motion videos for a few minutes (figure ). patients were then asked a few questions about how their day-to-day life has changed with their diagnosis. their responses were audio recorded. following the audio/video session, the clinical trial nurse introduced the patient to the therapy dog. after initial introduction, the patient is left alone to interact with the therapy dog for – min. this session is video recorded. upon completion of the pet therapy session, the therapy dog was led out of the studio, and the patient was asked to complete the standardized qol-c /bn questionnaire again. immediately afterward, the patient was again photographed/videotaped and then asked to respond to a few questions about how their perspective on life changed with their diagnosis. the study is currently ongoing with an initial goal to accrue patients. in this paper, we describe our findings from first patients enrolled. behav. sci. , , of behav. sci. , , x for peer review of (a) (b) figure . typical patient study room used for project. (a) artist speaking with a patient during the photography phase of the session; (b) patient responding to prompt to describe how his outlook on life changed because of his brain tumor diagnosis. . results . . impact of pet therapy on patients from our initial observation, we noticed that patients were very eager to meet the therapy dog and anticipated her arrival very enthusiastically. patients spent most of the pet therapy session physically interacting with the dog by hugging, petting, and playing with her. one of the consistent messages conveyed by most patients in the study was feeling as though they are their disease rather than an actual person. by participating in these study sessions, it allows the patient to tell their story to an unbiased audience and feel as though they are being heard. in addition, having the non-judgmental calming presence of the unassuming therapy dog, although transiently, provided them a friend who is just there for them without any questions or solution. when the therapy dog entered the room, most patients met her with a smile on their face. the patients immediately looked to the dog and began interacting with her as soon as she got to her seat. there was a palpable shift in the mood of the room once the therapy dog was introduced. patients appeared to relax and were excited to have time to just sit and pet the dog without interruption (figure ). figure . patient interactions with pet therapy dog: cleopatra dey, a cavalier king charles spaniel. the pet therapy component of the session was the only time the patients had to be alone in the room. this allowed the patient time to reflect on the session and have some quiet time to him or herself while petting the therapy dog. not having to converse with another person seemed to enhance the therapeutic effect of the pet therapy session. when the artist and study nurse re-entered figure . typical patient study room used for project. (a) artist speaking with a patient during the photography phase of the session; (b) patient responding to prompt to describe how his outlook on life changed because of his brain tumor diagnosis. . results . . impact of pet therapy on patients from our initial observation, we noticed that patients were very eager to meet the therapy dog and anticipated her arrival very enthusiastically. patients spent most of the pet therapy session physically interacting with the dog by hugging, petting, and playing with her. one of the consistent messages conveyed by most patients in the study was feeling as though they are their disease rather than an actual person. by participating in these study sessions, it allows the patient to tell their story to an unbiased audience and feel as though they are being heard. in addition, having the non-judgmental calming presence of the unassuming therapy dog, although transiently, provided them a friend who is just there for them without any questions or solution. when the therapy dog entered the room, most patients met her with a smile on their face. the patients immediately looked to the dog and began interacting with her as soon as she got to her seat. there was a palpable shift in the mood of the room once the therapy dog was introduced. patients appeared to relax and were excited to have time to just sit and pet the dog without interruption (figure ). behav. sci. , , x for peer review of (a) (b) figure . typical patient study room used for project. (a) artist speaking with a patient during the photography phase of the session; (b) patient responding to prompt to describe how his outlook on life changed because of his brain tumor diagnosis. . results . . impact of pet therapy on patients from our initial observation, we noticed that patients were very eager to meet the therapy dog and anticipated her arrival very enthusiastically. patients spent most of the pet therapy session physically interacting with the dog by hugging, petting, and playing with her. one of the consistent messages conveyed by most patients in the study was feeling as though they are their disease rather than an actual person. by participating in these study sessions, it allows the patient to tell their story to an unbiased audience and feel as though they are being heard. in addition, having the non-judgmental calming presence of the unassuming therapy dog, although transiently, provided them a friend who is just there for them without any questions or solution. when the therapy dog entered the room, most patients met her with a smile on their face. the patients immediately looked to the dog and began interacting with her as soon as she got to her seat. there was a palpable shift in the mood of the room once the therapy dog was introduced. patients appeared to relax and were excited to have time to just sit and pet the dog without interruption (figure ). figure . patient interactions with pet therapy dog: cleopatra dey, a cavalier king charles spaniel. the pet therapy component of the session was the only time the patients had to be alone in the room. this allowed the patient time to reflect on the session and have some quiet time to him or herself while petting the therapy dog. not having to converse with another person seemed to enhance the therapeutic effect of the pet therapy session. when the artist and study nurse re-entered figure . patient interactions with pet therapy dog: cleopatra dey, a cavalier king charles spaniel. behav. sci. , , of the pet therapy component of the session was the only time the patients had to be alone in the room. this allowed the patient time to reflect on the session and have some quiet time to him or herself while petting the therapy dog. not having to converse with another person seemed to enhance the therapeutic effect of the pet therapy session. when the artist and study nurse re-entered the room, patients appeared more at ease and this observation by our team was confirmed by verbal feedback from the patients. we also captured the change formally using qol-c /bn questionnaire that will be formally analyzed together for all the patients at the end of the study. preliminary data analysis from the nine patients showed significant improvement in long-term outlook on life after the session. . . impact of the portrait session on patients having an artist interact with patients to record how their diagnosis has affected them appeared to offer another promising way to improve quality of life outcomes in patients facing difficult diagnoses. the artistic intervention employed in this study offered a platform for the patient to share their story with others, giving the patient the unusual role of being the expert in a health care setting. in clinical care settings, patients typically play a psychologically passive role, expecting that the physician or medical professional will take the lead in caring for him or her. when a doctor asks how a patient is doing, they mostly think in terms of physical health, not their emotional health. even when a patient works with a clinical psychologist, the patient assumes they are there to be fixed. however, in our study setting, an artist who assumed the role of a neutral party rather than a clinician greeted the patient in a studio-like setting. from the beginning, the patient was treated like the expert and told of the importance and value of sharing their story so that the larger community can understand how it feels to face being diagnosed with such a daunting situation. both the artist and pet therapy sessions occurred in a calm setting to promote an environment that encourages reflection on their disease. we did not want the interview session to become a photo shoot, where the patient just becomes a stand-in for a model. we did not try to make them look “good” or fashionable. rather, the goal of our study was to make them look like themselves and let their personality come through. the same approach was taken when making audio recordings of patients talking about how their diagnosis has changed their routine and outlook on life. this approach kept the emphasis on the patient and ensured that the patient felt his or her voice was highly valued. thus, the artist session really elevated the importance of how the patient’s diagnosis has impacted their life, and how they find meaning in life post-diagnosis. anecdotally, patients often told the nurse at the end of the session or the neurosurgeon at their next clinical checkup how much they enjoyed participating in the study and had a chance to share their story with the artist. this may be because rather than focusing on just their condition and deficits, they saw participation in the study as being part of a larger effort, doing something for others instead of just themselves. often just focusing on the self is difficult for brain tumor patients, either because it brings up fears and anxiety about their diagnosis, or they already feel too much at the center of attention. patients who are diagnosed with a difficult illness can also feel disempowered by their situation. they can feel fatalistic and depressed by their lack of control. this study’s artistic intervention, where the patient becomes central to the creation of something with implied social value and relevance (in this case an artwork that can be shared with the public), can help them feel more empowered as a person. while the creation of a public art project may not be a scalable model for enhancing patient wellbeing for brain tumor patients, the premise of finding a way to make a patient’s experience and insight valued and useful likely is. early study results suggested there is significant value in the personal and non-traditional engagement with patients outside of standard medical treatment. especially, the artist who interacted considerably with the patient felt this change in the patient’s outlook over the course of the patient session. at first, patients were generally more reserved and waited for direction from the artist. by the end of the session, when the second round of photographs, video, and audio recordings were taken, patients appeared more relaxed, less reserved, and more open to speaking about their condition and behav. sci. , , of their life, clearly demonstrating the therapeutic benefit of the pet therapy session. in addition, patients seemed more positive and smiled more. all seemed genuinely engaged and glad to have participated in the study. this change seemed apparent when looking at many of the photographs taken at the beginning of the session versus those taken later, after the pet therapy component (figure ). behav. sci. , , x for peer review of photographs taken at the beginning of the session versus those taken later, after the pet therapy component (figure ). (a) before pet therapy session (b) after figure . examples of the photographs taken (a) before the pet therapy session and (b) after the pet therapy session. when asked informally about their experience of participating in the session, patients expressed positive feedback saying things such as: “i feel calmer. i do think there is a soothing aspect to it” and “it brings a sense of calm in an environment full of scans, medicines, and charts.” . . impact of the study on the community in this one of a kind study, that spans the boundaries of art and science, we were pleasantly surprised by many unexpected positive outcomes that were not initially accounted for. the study not only had a direct beneficial effect on the patients enrolled in the study, it also appeared to have a significant impact on the community by way of the art created during these sessions. the artist figure . examples of the photographs taken (a) before the pet therapy session and (b) after the pet therapy session. when asked informally about their experience of participating in the session, patients expressed positive feedback saying things such as: “i feel calmer. i do think there is a soothing aspect to it” and “it brings a sense of calm in an environment full of scans, medicines, and charts.” behav. sci. , , of . . impact of the study on the community in this one of a kind study, that spans the boundaries of art and science, we were pleasantly surprised by many unexpected positive outcomes that were not initially accounted for. the study not only had a direct beneficial effect on the patients enrolled in the study, it also appeared to have a significant impact on the community by way of the art created during these sessions. the artist engagement component of the study, including patient interviews and filming, resulted in the creation of individual video portraits of each patient. the videos utilize slow motion video and audio of patients telling the story from diagnosis to how their outlook on life has changed. to date, these videos have been exhibited three times in the indianapolis area, including at the st century great conversations in neuroscience, art and related therapeutics symposium that took place on the iupui campus in april (figure ). these videos are also accessible online through the portal: www.braintumordiaries.org. the website not only allows the public open access to listen to the patients’ stories, but it allows participants and their families easier access as well. the participants and their families have responded very positively to the videos. for those families that have unfortunately lost a family member to brain cancer, it has become even more valuable. behav. sci. , , x for peer review of engagement component of the study, including patient interviews and filming, resulted in the creation of individual video portraits of each patient. the videos utilize slow motion video and audio of patients telling the story from diagnosis to how their outlook on life has changed. to date, these videos have been exhibited three times in the indianapolis area, including at the st century great conversations in neuroscience, art and related therapeutics symposium that took place on the iupui campus in april (figure ). these videos are also accessible online through the portal: www.braintumordiaries.org. the website not only allows the public open access to listen to the patients’ stories, but it allows participants and their families easier access as well. the participants and their families have responded very positively to the videos. for those families that have unfortunately lost a family member to brain cancer, it has become even more valuable. (a) (b) (c) (d) figure . public exhibition of video portraits made from artist recordings with patients. (a) st century great conversations in neuroscience, art, and related therapeutics symposium, iupui. april ; (b) study presentation at eiteljorg museum, indianapolis, in in june . both a poster about the study, including details about pet therapy aspect and select video portraits made from the artist were on display; (c,d) vitality through art exhibition, marian university, indianapolis, in, november . public exhibition of video portraits made from artist recordings with patients. the public has responded very positively to these artistic exhibitions of brain tumor patients, describing them as “meaningful” and “important” while acknowledging the difficulty in listening to a person who has been dealt such a difficult reality. individuals who stop and listen to these patients’ stories come away touched and from an artistic perspective. that was precisely the goal—to offer people an opportunity to recognize that life is fleeting, even fragile and unfair, but the resilience of the human spirit, even in the hardest moments is strong. so, although the subject is difficult and bleak, these portraits are meant to serve as an inspiration to the rest of us about how even when compromised by illness, there is much to be had in the human experience. we will be monitoring this trend of positive impact on the community by tracking the number of visits to our website and by counting the number of invitations received from the community to present our work in public settings. figure . public exhibition of video portraits made from artist recordings with patients. (a) st century great conversations in neuroscience, art, and related therapeutics symposium, iupui. april ; (b) study presentation at eiteljorg museum, indianapolis, in in june . both a poster about the study, including details about pet therapy aspect and select video portraits made from the artist were on display; (c,d) vitality through art exhibition, marian university, indianapolis, in, november . public exhibition of video portraits made from artist recordings with patients. the public has responded very positively to these artistic exhibitions of brain tumor patients, describing them as “meaningful” and “important” while acknowledging the difficulty in listening to a person who has been dealt such a difficult reality. individuals who stop and listen to these patients’ www.braintumordiaries.org behav. sci. , , of stories come away touched and from an artistic perspective. that was precisely the goal—to offer people an opportunity to recognize that life is fleeting, even fragile and unfair, but the resilience of the human spirit, even in the hardest moments is strong. so, although the subject is difficult and bleak, these portraits are meant to serve as an inspiration to the rest of us about how even when compromised by illness, there is much to be had in the human experience. we will be monitoring this trend of positive impact on the community by tracking the number of visits to our website and by counting the number of invitations received from the community to present our work in public settings. . discussion this unique project began when two of the authors engaged in a discussion about the cross section of art and science, and how the two might collaborate to study how brain tumor patients’ quality of life could be improved by engagement in non-traditional experiences outside of standard clinical care. the current study was born out of the belief that collaboration between art and science could be symbiotic and produce useful outcomes on multiple fronts. the one of a kind nature of the project also created several challenges that we had to work though. the use of a therapy dog is an integral part of this study, but it also introduces an inherent “dog lover” bias to the study. all the patients who consent to the study are self-proclaimed “dog lovers”, and they appear to be excited by just the prospect of enrolling in the study. while use of animals to decrease anxiety and improve mood have been documented in other health settings, it remains underemployed as a tool to improve patient wellbeing in standard clinical practice. in our study, the pet therapy session happens in the outpatient clinical setting. since brain tumor patients sometimes spend significant time in the hospital, the feasibility of this method needs to be tested in inpatient settings. the methodologies employed between science and art are vastly different and often appear incompatible. this created a healthy challenge for us as we approached a study design that would give adequate space for both an artist and scientific researcher to feel that their efforts could be shaped into meaningful outcomes in their respective disciplines. on one hand scientific methodologies such as qol-c /bn questionnaire are very objective; whereas, on the other hand, the experimental methodology, the analysis of facial expression is subjective. in the ideal setting, use of multimodal tools that combines pro along with analysis of facial expression will provide a more comprehensive assessment of hrqol in brain tumor patients. since there have been no previous studies to provide us a pre-established framework, we had to leave some fluidity in our study structure. the initial goal of our study was to study the effect of pet therapy, and we did not anticipate the positive effect of participatory art that arose from the patients’ interactions with the artist. thus, our current study is not designed to delineate the effect of pet therapy vs. participatory art-making. another significant aspect of the study was the involvement of the artist in the study. it may be difficult to arrange close collaboration between artists and scientists except in larger academic or urban settings where both medical researchers and artists can easily interact. furthermore, larger universities may allow for unique grant mechanisms that encourage transdisciplinary research to foster such research between distinct disciplines and fields of research. even with these limitations, when it comes to the subject of trying to help people and improve quality of life, science and art are often working toward similar goals, and we were able to design a working protocol that is flexible enough to allow for the analytical needs of research as well as the creative freedom essential for the creation of art. our goal in publishing the early findings of this study is to inspire more people to engage in designing and executing studies that blur the line between very dissimilar fields and establish innovative tools to improve the quality of life of patients. the interactive session employed by this study had a clear impact on the patients who have so far participated, and we anticipate the trend of significant improvement in a patient’s long-term outlook on life will continue as the study pool grows. due to the limitation of the study design, we cannot say with certainty if this change is due to the intervention with the artist or the pet therapy session or behav. sci. , , of both. future studies must be designed to accommodate two arms, one studying the role of pet therapy and another the role of participatory art-making separately. in addition, feasibility of the study in the inpatient clinical setting will also need to be evaluated. based on the feedback we received from the community engagement in the project, one way to fund such creative study designs in the future might be by public exhibition of the artistic works produced. in addition, patient enrollment has been harder than expected, partially due to the impact of brain tumors on patient independence. the fact that most brain tumor patients cannot drive themselves to the clinic, and the understanding that many patients live more than an hour away from where the study is conducted makes it unfeasible for many to participate. in conclusion, it is of paramount importance for medical practitioners to consider the whole person when they are treating a patient. patients often feel high levels of stress and anxiety around their diagnosis and while practitioners are generally sensitive and compassionate to this, alternative non-traditional interventions such as pet therapy and artist led projects, as well as other engagement approaches should be considered in the context of the patient’s hrqol. this study serves as a model for how artists and scientists can work together to improve patient’s experiences and create valuable research findings and artistic output concurrently. author contributions: s.p.: study design, study execution, data collection, data presentation, manuscript writing. j.p.: study coordination, patient enrollment, data collection, data presentation, manuscript writing. m.d.: study design, patient enrollment, data collection, manuscript writing, study oversight. acknowledgments: this study has been generously supported and funded by indiana university’s new frontiers in the art and humanities exploratory grant program and indiana university department of neurological surgery. goodman campbell brain and spine. we would like to thank the therapy dog, cleopatra dey, for her loving kisses and being an integral part of the study. conflicts of interest: authors declare no conflict of interest. references . stupp, r.; 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[crossref] [pubmed] © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . / http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /j.jad. . . http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /geront/gnt http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /s - - - http://www.ncbi.nlm.nih.gov/pubmed/ http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	methods 	results 	impact of pet therapy on patients 	impact of the portrait session on patients 	impact of the study on the community 	discussion 	references a rapture of the nerds? a comparison between transhumanist eschatology and christian parousia roberto paura abstract transhumanism is one of the main “ideologies of the future” that has emerged in recent decades. its program for the enhancement of the human species during this century pursues the ultimate goal of immortality, through the creation of human brain emulations. therefore, transhumanism offers its fol- lowers an explicit eschatology, a vision of the ultimate future of our civilization that in some cases coincides with the ultimate future of the universe, as in frank tipler’s omega point theory. the essay aims to analyze the points of comparison and opposition between transhumanist and christian eschatologies, in particular considering the “incarnationist” view of parousia. after an introduction concern- ing the problems posed by new scientific and cosmological theories to traditional christian eschatology, causing the debate between “incarnationists” and “escha- tologists,” the article analyzes the transhumanist idea of mind-uploading through the possibility of making emulations of the human brain and perfect simulations of the reality we live in. in the last section the problems raised by these theories are analyzed from the point of christian theology, in particular the proposal of a transhuman species through the emulation of the body and mind of human beings. the possibility of a transhumanist eschatology in line with the incarnationist view of parousia is refused. keywords emulations; eschatology; singularity; transhumanism " roberto paura, italian institute for the future, via gabriele jannelli – napoli, italy 📧  r.paura@futureinstitute.it b   - - - ! " forum philosophicum ( ) no. , – subm. september     acc. september issn - e-issn - doi: . /forphil. . . mailto:r.paura@futureinstitute.it roberto paura eschatologists vs. incarnationists: a theological quarrel in his principles of christian theology, the scottish-born anglican theolo- gian john macquarrie wrote that if it were shown that the universe is indeed headed for an all-enveloping death, then this might seem to constitute a state of affairs so wasteful and negative that it might be held to falsify christian faith and to abolish christian hope.  to better explain macquarrie’s thought and the problem he poses for chris- tian theology, one can refer to the words of ignazio sanna, now president of the pontifical theological academy: how is it possible to “express an eschatology, that is, a promise of salvation, based on the word of god,” within a scientific framework “whose predictions seem inauspicious both for the survival of the human species (in the short as well as in the long term) and for the future of the cosmos?”  in the christian conception, the universe has not only a beginning in time but, with the parousia, an end in time, when the advent of the “new heavens” and the “new earth” (rev :   ) occurs, and the time comes to an end. the parousia, or the advent of the kingdom of heaven, represents a radical break with respect to the linear unfolding of time. since the nine- teenth century, scientific progress, in particular the theory of the heat death of the universe and, in the twentieth century, the open cosmological models that provide for a gradual, interminable depletion of the energy of the universe up to the remote big freeze, have provided an image of the ultimate end of all things very different from the christian vision. hence, the difficulties involved in reconciling scientific and christian eschatol- ogy. this topic was addressed on the eve of the second vatican council in the debate that divided the theologians between “eschatologists” and “incarnationists.” for the former, parousia represents a breaking point in the history of the world, which therefore will not necessarily involve the universe, considered as a mere background of human events; for the lat- ter, the entire universe should instead be transfigured into the kingdom of heaven.  more precisely, for incarnationists, the physical environment . john macquarrie, principles of christian theology (new york: charles scribner’s sons, ), . . ignazio sanna, fede, scienza e fine del mondo. come sperare oggi (brescia: editrice querini- ana, ), . . all bible references come from new international version bible. . francesco brancato, il futuro dell’universo. cosmologia ed escatologia (milan: jaca book, ), . a rapture of the nerds? that surrounds us is not a passive background of god’s providential design, but it is through our relationship with nature that our person acquires full fulfillment: therefore, one cannot imagine that, in the aftermath of the res- urrection, there is no room for this environment, albeit in a different form from that we experience today. for eschatologists, the universe is instead only a temporary home of humankind, subject to decay and corruption as everything that exists in time, so it will be replaced by the kingdom after the end of the world. critics of incarnationism include some important theologians who played an important role at the eve of the second vatican council. for the swiss theologian hans urs von balthasar, the idea that the parousia involves a transformation of the universe is affected by the ancient and medieval cosmological conceptions, where god inhabited a physical place in the farthest heaven, and hell was physically wedged in earth’s bowels. since this conception has long been completely abandoned, it makes no sense to insist that the universe should participate in the transfiguration of the risen bodies promised by christ: rather, eschatology will concern only humankind in its direct contact with god, who does not reside in any physical place from which he will come to inhabit the universe transformed into the kingdom, but who represents a dimension of existence where the relationship between humankind and god will be direct and immediate, without intermediaries, and will restore meaning and authenticity to the relationships between risen human beings.  similarly, for ignazio sanna theological eschatology has nothing to do with physical eschatology, just as theological creation has nothing to do with creation in the physical sense: if cosmology says that the universe was born . billion years ago, this moment of creation from nothing (more precisely, from a quantum fluctuation) should not be identified with the creation told in genesis, since creation should be considered as a constant process in time, something happening at a relational level, binding all living things to god as the ultimate cause of their existence. similarly, the end of the universe has nothing to do with the end of the world announced by the scriptures, because this latter is embodied in the coming of the kingdom, that is, in the “fulfilment of the world in the peace of god.”  according to sanna, who refers to karl rahner, the temporality of creation is different from the one we experience. we live a “three-dimensional” temporality, . see hans urs von balthasar, escatologia del nostro tempo. le cose ultime dell’uomo e il cristianesimo (brescia: editrice queriniana, ). . sanna, fede, scienza e fine del mondo, . roberto paura which includes past, present and future; creation presupposes instead a two-dimensional temporality, because “the beginning has no past and the end has no future. there is a before without before and an after without an after.”  incarnationists replied with st. paul’s statement that “the whole creation has been groaning as in the pains of childbirth” (rom : ), so the final redemption should not only concern humankind within a cosmos that will be abandoned to itself, but will involve the whole of creation, even the furthest subatomic particle. it is in fact within creation transfigured into the parousia that the resurrection of bodies will take place, so that the uni- verse is not something destined to be preserved only for as long as human history lasts, but is destined to host the kingdom of god. by contrast, the jesuit jean galot interprets the concept of “creation” employed by st. paul as referring to the whole of humanity, with a distinction between christians and pagans. those who groan in pain are above all those who have not yet known the gospel and the hope it offers them, consisting in the possibil- ity of becoming authentic children of god. the distinction is therefore not between the destiny of the material universe and the destiny of humanity, but between the pagans and the christians. moreover, the sentence “heaven and earth will pass away, but my words will never pass away” (mt : ) would suggest—according to galot—that eschatology would not concern the physical universe, which is destined to be completely replaced by the new creation.  in his book theology of hope, jürgen moltmann suggests a third way: not a cosmological interpretation of eschatology, but an eschatological in- terpretation of the cosmos. in his conception, the boundaries of our reality should be considered as mobile and temporary, so that the parousia will cause an overcoming of these boundaries, making the previous creation appear as little compared to the new creation that will come. the cosmos is absorbed in the process of the eschaton, albeit at a moment historically situated in time. moltmann proposed this intermediate solution under the influence of ernst bloch’s the principle of hope: but while bloch (a marxist philosopher) exhorted an intra-worldly future transformation of humanity, moltmann proposed adding to bloch’s “principle of hope,” that is, to the utopian projects for a better future in the world, the “trustful certainty” of the resurrection and the advent of the kingdom. the result would be . ibid., . . jean galot, “il destino finale dell’universo,” accènti ( ). a rapture of the nerds? an overcoming of the intra-world utopias in the direction of the promise through which god orients the history of humankind.  however, at the end of the second vatican council the incarnationist interpretation of eschatology prevailed. according to this vision, the “new heavens” and the “new earth” will concern not an otherworldly spiritual dimension, but our very universe, since christian eschatology promises the resurrection of the bodies transfigured within this world and that christ, incarnated in this world by obeying the physical and biological laws that govern it, continued to move on earth with his physical body after his resurrection. at the same time, the resurrection of christ violates physical and biological laws, so it seems to anticipate the final transfiguration that awaits the universe with the parousia, so that it can be said that “statements such as «end of the world,» «universal judgment» or «return of christ» cannot be put in direct relation to the time which the sun will spend to exhaust the hydrogen burning in its core, or with the time we humans have at our disposal to migrate towards more hospitable planets.”  the pastoral constitution gaudium et spes, one of the main doctrinal documents issued by the second vatican council, recalls (quoting mt : ) that “we do not know the time for the consummation of the earth and of humanity, nor do we know how all things will be transformed,” although we can certainly deduce that our world, “deformed by sin,” will be transformed or replaced by a new dwelling place and a new earth where justice will abide, and whose blessedness will answer and surpass all the longings for peace which spring up in the human heart.  according to the american physicist and theologian robert j. russell, direc- tor of the center for theology and the natural sciences, “if the universe theologians describe corresponds to the creation of god, then it is the universe that must become eschatologically the new creation.”  this vision was promoted by pierre teilhard de chardin with his well-known theory of . jürgen moltmann, theologie der hoffnung (münchen: chr. kaiser verlag, ). . giuseppe tanzella-nitti, “creation,” in inters—interdisciplinary encyclopedia of religion and science, ed. giuseppe tanzella-nitti, ivan colagè and alberto strumia ( ), accessed august , , http://inters.org/creation. . vatican council ii, gaudium et spes, accessed december , , vatican.va, . . robert j. russell, “la dottrina della creatio ex nihilo in relazione al big bang e alle cosmologie quantistiche,” in l’uomo alla ricerca della verità. filosofia, scienza e teologia: pros- pettive per il terzo millennio. conferenza internazionale su scienza e fede. città del vaticano, - maggio (milan: vita&pensiero, ), . roberto paura the omega point. teilhard was guided by the conviction that evolution was not a random process at all, but “an ascent toward consciousness” destined to “culminate forwards in some sort of supreme consciousness.”  conse- quently, evolution can only be teleological and tending towards a growing complexity whose apex is represented by the omega point, coinciding with god at the end of time. teilhard distinguishes five stages of the evolution- ary process: the formation of atoms and molecules (“corpuscularization”), the formation of unicellular and multi-cellular beings (“vitalization”), the birth of the brain and intelligence (“cephalization”), then the emergence of man (“hominization”) and, finally, the rise of complex social structures (“socialization”). at the end of this last stage, the biosphere is replaced by a noosphere, i.e. the intelligence fills all creation, transforming it. this process would be guided by a radial energy, of a spiritual nature, opposite to the tangential energy of a physical type: a sort of negentropy, that is, an equal and opposite force to entropy expressed by the second law of thermodynamics as a measure of disorder and progressive degradation of closed systems. the radial energy, on the contrary, with the passing of time becomes more concentrated and available, pushing living forms towards a teleological evolution in time. teilhard therefore imagines a parousia that takes place on a cosmological scale, with a transfiguration of the physical world subjected to the pressure of intelligence. the omega point, the end point of history, acts retrospectively, guiding the flow of things towards the eschaton. however, the omega point should not be understood as the final point of the unification of humanity, but something different from the human species to come. god is not an aggregation of human personali- ties, but a transcendent and autonomous center. not a center destined to appear at the end of time, but something who already exists, which in the present acts to achieve its ultimate purpose. the omega point is therefore god, the same god who created the universe, the god of the old and new testaments, who is alpha and omega. christianity is therefore an authentic “religion of the future” for teilhard, and there is no conflict or separation between science and religion: revelation can also be understood in a scien- tific key. for teilhard, christ, already identified in john’s gospel as the lógos existing at the beginning of all things, who is incarnated in the world “in the fullness of time” and who will return at the end of the world, is also an evolver, a teleological orientation “forward and upward,” as he will write in the last page of his diary three days before his death. . pierre teilhard de chardin, the phenomenon of man (new york: harper perennial, ), . a rapture of the nerds? definitely, we can define teilhard as “incarnationist:” for him, the par- ousia, the advent of the omega point, will take place in the future of this universe. at the fulfillment of this evolutionary process, christ will raise and save all the matter of the cosmos, including our bodies, transforming them up to their authentic glorified dimension. while admitting that the parousia does not wait for the completion of cosmological times to occur, teilhard could not prevent himself from supposing the existence of a cer- tain relationship between the fulfillment of the process of noogenesis and the advent of the kingdom. this conviction stemmed from his observation that the moment of the incarnation occurred at a time when humanity was “anatomically developed, and socially advanced, up to a certain degree of collective consciousness.”  therefore, teilhard was led to suppose that in the case of his second and final coming too, christ is waiting to reap- pear until the human collectivity has at last become capable (because fully realized in its natural potentialities) of receiving from him its supernatural consummation.  teilhard considered the emergence of intelligent life extremely unlikely. it was generated only once on earth and, should the human species become extinct, it will not be replaced by other intelligent forms of life. similarly, the universe is sterile in intelligence. therefore, man’s ultimate goal is to fill the entire universe with intelligence, to extend the noosphere to the entire cosmos. “man is irreplaceable. therefore, however improbable it might seem, he must reach the goal, not necessarily, doubtless, but infallibly.”  similarly, theoretical and cosmological physicists john barrow and frank tipler have coined a “final anthropic principle” that states that, once it emerges, intelligent life can never become extinct.  already in , in an article entitled time without end: physics and biology in an open universe, physicist freeman dyson questioned the perspective of life in the universe in an open cosmological model.  how long can life last in such a universe? we know that already within years all the stars, even those not yet . teilhard de chardin, “two principles and a corollary (or a weltanshauung in three stages),” in toward the future (new york: harcourt, ), . .  ibid., – . . teilhard de chardin, the phenomenon of man, . . john d. barrow and frank j. tipler, the anthropic cosmological principle (new york: oxford university press, ), . . freeman j. dyson, “time without end: physics and biology in an open universe,” reviews of modern physics , no. (july–september ). roberto paura born, should be dead, so that all chemical processes that rely on the energy provided by the stars (including, of course, the chemical processes at the basis of life) can no longer take place.  in the enormous amount of time that will follow, the universe should be inexorably sterile. however, bar- row and tipler argue that intelligent life can reverse this process. their proposal leads them to imagine an intelligence that gradually fills the whole universe, similar to teilhard’s vision, to the point of modifying the same basic physical laws. they observe how the growth of the human species over the millennia has led it, starting from a living species similar to many others belonging to the class of mammals, to become a true “geological force” in recent centuries or decades, since the technological civilization has become able to impact radically on the entire biosphere. while these considerations do not sound very encouraging in the current age of the anthropocene, barrow and tipler, in their optimism, assume that human civilization (or rather, what will follow, since they take into account a cybernetic evolution of our species) will be able to perform the same process on a cosmological scale. by identifying life with information, they affirm that, no matter how the human organism evolves, there will be a way to preserve and produce information eternally. since information does not necessarily require mat- ter for its conservation and processing, even the electrons and positrons that will fill the universe in the distant future when matter will have given way to radiation may be able to guarantee these processes, provided that heat death is prevented by a process of contraction, such as to generate a conical singularity similar to teilhard’s omega point. even if physical laws were contrary to this possibility, the intelligence of the remote future could modify them: finally, the time is reached when life has encompassed the entire universe and regulated all matter contained therein. life begins to manipulate the dynamical evolution of the universe as a whole, forcing the horizon to dis- appear, first in one direction, and then another.… if life evolves in all of the many universes in a quantum cosmology, and if life continues to exist in all of these universes, which include all possible histories among them, then all of these universes, which include all possible histories among them, will ap- proach the omega point. at the instant the omega point is reached, life will have gained control of all matter and forces not only in a single universe, but in all universes whose existence is logically possible; life will have spread . barrow and tipler, the anthropic cosmological principle, . a rapture of the nerds? into all spatial regions in all universes which could logically exist, and will have stored an infinite amount of information, including all bits of knowledge which it is logically possible to know. and this is the end.  tipler extended this proposal in the following years, starting from the observation that teilhard’s omega point can be compared to a conical singularity of the type envisaged by closed universe models, a point on the boundary of space-time in a universe with a finite spatial extension. in his controversial book the physics of immortality, tipler elaborated a modern version of the omega point theory equipped, in his view, with scientific criteria, i.e. capable of providing empirically testable predictions. starting from the assumption that human consciousness can be essentially traced back to information, so to be emulated on a computer, he imagines the omega point as a sort of futuristic universal turing machine, i.e. a machine able to emulate any type of computer, including the very peculiar one rep- resented by the human brain. therefore, the final resurrection promised by jesus will take place through a computer simulation where, however, we will not live as disembodied consciousnesses, but endowed with some kind of corporeality, although not of organic nature. actually, an effective computer simulation would be able to give us back the sense organs and all the sensations we experience through our biological body, but without the biological body. for tipler (who defines himself a catholic worshipper), this should safeguard the promise of a resurrection “of the flesh,” and not only of the spirit.  understanding transhumanist eschatology although often minimized or dismissed as a minority ideology, transhu- manism can be defined as the mainstream philosophical orientation of “technological solutionists,” a term used by evgeny morozov to identify silicon valley’s gurus,  but that more generally defines the supporters of the “californian ideology,” based on the belief that radical technological innovation will have disruptive effects on society as a whole, even redefin- ing the very connotations of the human being.  it is therefore an ideology . ibid., – . . frank j. tipler, the physics of immortality: modern cosmology, god, and the resurrection of the dead (new york: anchor books, ). . evgeny morozov, to save everything, click here: the folly of technological solutionism (new york: public affairs, ). . richard barbrook and andy cameron, “the californian ideology,” science as culture , no. (january ). roberto paura destined to become very popular, especially in the years to come; and if, in their daily work, technological solutionists are not particularly interested in the philosophical debate of transhumanism, in the long run it offers them a convincing and, above all, intra-worldly eschatological vision, that is, an eschatology without the transcendental aspects of traditional religions. this vision is based on the conviction that by extrapolating toward the future the accelerating pace of technological progress (as moore’s law on the capabilities of microprocessors suggests), the advent of a “technological singularity” is very close. the singularity is envisioned as a watershed event beyond which the predictive capabilities of the human being fail, since the guidance of our evolution will be assumed by artificial intelligences or by a hybridization between humankind and machines. the main theorist of technological singularity is the technologist and futurist ray kurzweil, who estimated its occurrence just before the middle of the century, between and , and also tried to provide some hypothesis about the path that will lead to its achievement.  according to kurzweil, towards the end of the third decade of the st century our civilization will become able to achieve a complete reverse-engineering of the human brain, so to emulate it on a dry hardware (including the whole range of human emotions) and to overcome its complexity. subsequently, we will become able to upload the entire pattern of a human being into a non-biological thinking substrate. as a result, humans will be freed from their wet, biological component, so that only their consciousnesses will sur- vive, virtually forever, provided backup copies are made in case of accidental or intentional destruction of the hardware support. in richard morgan’s science fiction novel altered carbon ( ) this is the event that starts the narrative plot: the attempted murder of a man through the destruction of his backup copy (it’s interesting to note that inside the novel christians oppose the possibility of mind-uploading, therefore dying permanently). the conviction that our future will be characterized by the advent of a technological singularity and by the transformation of human beings into transhumans who can free themselves from the physicality (and mortality) of their body is extremely widespread in transhumanist ideology. in anders sandberg and nick bostrom of the future of humanity institute at oxford university signed a technical report entitled whole brain emula- tion: a roadmap, where they analyze the different possibilities to achieve a perfect emulation of the human brain. the two authors distinguish between . ray kurzweil, the age of intelligent machines (cambridge, ma: mit press, ); ray kurzweil, the singularity is near (new york: viking, ). a rapture of the nerds? the concept of “simulation,” which imitates the output results of a system, from that of “emulation,” which imitates the internal causal dynamics of a system. the emulation of a human brain would be successful if it were able to produce the same output behavior and results as the original, possibly at a higher speed.  these considerations have partially inspired the ambitious human brain project, launched in with funding of one billion euros by the european commission, to achieve a computer-based emulation of the human brain, with the main objective of understanding the mechanisms underlying neurological diseases, but with the explicit belief that such a path would pave the way for the realization of a strong or self-conscious artificial intelligence. in the following years the project has been subject to countless criticisms resulting in consequent changes to the approach used. this has impacted the timeframe, with the result that it will fail to achieve the desired outcome by , as originally planned.  in his book the age of em: work, love, and life when robots rule the earth, future of humanity institute’s economist robin hanson analyzed the scenario of a future ruled by ems, from emulations. these are artificial intelligences based on the emulation of the human brain, to which humans will assign the tasks once considered the exclusive prerogative of human intelligence, in order to free themselves from work and fatigue, and to en- trust these more advanced intelligences with the task of pushing forward technological progress. a part of these ems would live in our physical world, inside robotic bodies; but a majority would live in the form of disembodied intelligences within virtual worlds. according to hanson, human beings in this future might not exist at all or rather might be an endangered species. actually, the ems would represent the next step in the evolution of intel- ligence, able to replace our species and become the dominant race of the planet (and then of the solar system).  physicist max tegmark, co-founder of the future of life institute based in  cambridge, massachusetts, defines life . as this new form of life that would emerge from the hybridization of human and artificial intel- ligence. tegmark cites the “prophecy” of technologist and futurist hans moravec, whose book mind children ( ) was one of the founding texts of transhumanism: . anders sandberg and nick bostrom, “whole brain emulation: a roadmap,” (technical report # - , future of humanity institute, oxford university ), . . ed young, “the human brain project hasn’t lived up to its promises,” the atlantic, july , . . robin hanson, the age of em: work, love, and life when robots rule the earth (oxford: oxford university press, ). roberto paura we humans will benefit for a time from their [intelligent emulations] labors, but sooner or later, like natural children, they will seek their own fortunes while we, their aged parents, silently fade away.  although it is only one of the possible scenarios of future life outlined by tegmark, and one of the only three in which the human species is destined to disappear (together with the scenario where ais violently destroy our species, and the scenario where our species extinguishes before developing ais), he appears substantially at ease with the idea that emulations repre- sent our future descendants, as they can prove to be much more capable of facing the coming challenges and spreading in the universe, even to the point of changing its evolution. these ideas owe a lot to the influence of tipler’s omega point theory. one of the theoretical premises of the omega point theory are john von neumann’s cellular automata. according to von neumann (one of the founders of modern computer science), life can be considered basically the result of a series of laws replicable on a computer, able to evolve a system from the simplest possible level to self-conscious complexity; therefore, if consciousness is an emerging phenomenon replicable computationally, it is reasonable to expect that in the future the spread of intelligence in the universe will occur through self-replicating machines that will colonize the different planets, filling the whole universe.  a similar conception has been more recently promoted by the historian and futurist yuval noah harari, who distinguishes transhumanist ideolo- gies into two types: techno-humanism and dataism (or “data religion”). both start from the consideration that “once authority shifts from humans to algorithms, the humanist projects may become irrelevant,” but while techno-humanism suggests using technology to significantly enhance the human being to achieve an improved version (the homo deus), dataism is based on the principle that “the universe consists of data flows” and that “the same mathematical laws apply to both biochemical and electronic algorithms.”  with the rise of the modern data-driven society, where more and more functions once the competence of human intelligence are en- trusted to algorithms programmed and able to learn autonomously (machine . max tegmark, life . : being human in the age of artificial intelligence (new york: doubleday, ), . . john von neumann and arthur w. burks, theory of self-reproducing automata (urbana, il: university of illinois press, ). . yuval noah harari, homo deus: a brief history of tomorrow (london: harvill secker, ), . a rapture of the nerds? learning), dataism is based on the belief that in its essence the human being is indistinguishable from von neumann’s cellular automata and therefore it is preferable to replace the current human species with something differ- ent, a self-conscious version of the internet-of-things where autonomous algorithms will act by forming a collective intelligence to optimize data processing. “once this mission is accomplished, homo sapiens will vanish.”   while the transhumanist movement initially excluded explicit religious references from its ideology, over the years some organizations of christian faith have emerged in the united states that have tried to propose a concili- ation between transhumanist and christian eschatologies. in  the mor- mon transhumanist association (mta) was founded, joining in the same year the world transhumanist association, whose current name is hu- manity+ (but it does not have official affiliations with the church of jesus christ of latter-day saints). the mta claims to believe in the gospel of jesus christ, and in its compatibility with and complementarity to many re- ligions and philosophies, “particularly those that provoke strenuous pursuit of compassionate and creative exaltation,” because the invitation of jesus would consist in becoming “compassionate creators.” from this derives the search for “the spiritual and physical exaltation of individuals and their anatomies,” through scientific knowledge and technological power, which are “among the means ordained of god to enable such exaltation, including realization of different prophetic visions of transfiguration, immortality, resurrection, renewal of this world, and the discovery and creation of worlds without end.” the mta defines transfigurism as the religious version of transhumanism, exemplified by the syncretization of mormonism and transhumanism. according to mta, the term “transfigurism” alludes to a concept that is found in different religious traditions, such as hinduism (krishna’s universal form), judaism (moses’ radiant face after his encounter with god), buddhism (the enlightenment that leads siddhartha gautama to become buddha), and christianity (the transfiguration of jesus christ).  moreover, according to former mta president lincoln cannon, god could be considered an advanced form of man-machine hybridization, a status we would achieve in the future and which would possess capacity for retro- causality (something very similar to tipler’s omega pont).  . ibid., . . all the quotations are from the official mta website: https://transfigurism.org/ ac- cessed august , . . lincoln cannon, “theology may become a science of superintelligence,” on lincoln cannon official website, http://lincoln.metacannon.net/ / /theology-may-become - -science-of.html. roberto paura in , the christian transhumanist association (cta), also affiliated to humanity+, was founded. the cta is based on the belief that god’s mission involves “the transformation and renewal of creation including humanity,” and that people have been “called by christ to participate in that mission,” fighting against illness, hunger, oppression, injustice and death. becoming like christ implies “using science and technology ethically to improve the world.” the cta considers teilhard de chardin a forerun- ner of transhumanism, and among the texts recommended by the cta to understand the relationship between christianity and transhumanism is frank tipler’s the physics of immortality.  similarly inspired by tipler’s theory is the “turing church,” a current of thought founded by former executive director of the world transhumanist association giulio prisco. the turing church (whose name is based on a play on words: alonzo church and alan turing proposed the church-turing thesis on the possibility of building a computer capable of solving problems solvable by the human mind) is inspired by russian “cosmism,” founded by the philosopher nikolaj fedorovic fedorov in the nineteenth century and based on the idea of a self-directed evolution through scientific and tech- nological progress. the cosmists believed in the possibility of achieving the resurrection of bodies by bringing the disposition of the atoms of the dead back to the configuration prior to death.  similarly, prisco argues that, with future technological development, it will become possible to retrieve the information of dead people even long ago and bring them back to life. prisco also argues that our reality is a computer simulation, that god should be assimilated to a computer super-programmer (probably a superintelligence) and that the afterlife could be either another simulation or the real world in which we will wake up after death or after the resurrection.  transhumanist and christian eschatology in comparison a first problem that emerges in the confrontation between christian es- chatology and transhumanism concerns the role of the human being. in fact, transhumanism states that the current mortal condition of the human being is destined to be overcome through a process of enhancement made . all the quotations are from the official cta website: https://www.christiantranshuman- ism.org/, accessed august , . . george m. young, the russian cosmists: the esoteric futurism of nikolai fedorov and his followers (oxford: oxford university press, ). . giulio prisco, “christianity and transhumanism are much closer than you think,” the turing church website, http://turingchurch.com/ / / /christianity-and -transhumanism-are-much-closer-than-you-think/. a rapture of the nerds? possible through next technologies. but if one accepts the doctrine of the imago dei, whose starting point is genesis : (“so god created man in his own image; in the image of god he created him; male and female he created them”), it follows that within the evolutionary process, since the beginning, a project exists aimed at creating the human being “in the image of god.” the transhumanist principle of a self-directed evolution, by which the human species must assume a leading role in the evolutionary process, clashes with the christian idea that human evolution already possesses a precise direction, willed by god. in the document of the international theological commission on this subject (communion and stewardship: human persons created in the image of god) the irreconcilability of these two points of view is well emphasized: the view of the universe advanced by modern science displaced the classical notion of a cosmos made in the divine image and thus dislodged an important part of the conceptual framework supporting the theology of the imago dei.  a possible solution has been proposed by philip hefner, professor emeritus of systematic theology at the lutheran school of theology in chicago and first director of the prestigious zygon center for religion and science, with the concept of created co-creator: humankind was created by god to participate in creation in an active way, intervening in the world in order to adapt it to the divine design; the overcoming of our biological limits would therefore be part of this design.  but this idea is in clear contra- diction with the doctrine of the imago dei. if humankind was created in the image of god, then homo sapiens represents the pillar of creation and should not be considered further perfectible (also because christ chose to incarnate himself in a “non-enhanced” human body). in the above-men- tioned document of the international theological commission this very concept is reaffirmed, stating that if it is accepted that human beings can fully dispose of their own body then people “could determine the finality or teleological value of the body”; but the “right to dispose of something” applies only to objects “with a merely instrumental value,” not to “which are good themselves, i.e., ends in themselves.” the human being belongs to this latter category. it follows that: . international theological commission, “communion and stewardship: human persons created in the image of god,” ( ), § . . philip hefner, “the evolution of the created co-creator,” currents in theology and mission , no. (december ): – . roberto paura given that man was also created in god’s image in his bodiliness, he has no right of full disposal of his own biological nature. god himself and the being created in his image cannot be the object of arbitrary human action.  the question becomes even more complex when it turns to the eschatologi- cal conception of a future technological singularity that would guarantee immortality in a sort of simulation at the end of time, as in tipler’s theory. the basis of the christian doctrine of immortality is that the resurrection takes place only after death, a passage that cannot be avoided. referring to st. paul’s second epistle to the corinthians, the catechism of the catholic church says: to rise with christ, we must die with christ: we must “be away from the body and at home with the lord.” in that “departure” which is death the soul is separated from the body. it will be reunited with the body on the day of resurrection of the dead.  moreover, according to christ’s revelation, resurrection will not occur in a ghostly form, but preserving one’s own body, although in a “transfigured” form. this passage is solved by some, such as the transhumanist mormons, affirming that the task of transhumanism is precisely that of carrying out a transfiguration of the physical body through technologies. eventually, mind uploading would only be an intermediate step, in which the fragile human body is abandoned to wait for the moment when the disembodied consciousness can re-incarnate in a new perfect and immortal body. however, this interpretation poses many problems. according to thomas aquinas, the human person is inseparably composed of body and soul. when the body perishes, that is, when the soul is separated from the body, it retains the natural attitude and inclination to reunite with the body: the body is dead (homo mortuus) but the human person continues to exist even after separation, precisely because this separation is to be considered temporary.  this conception has the function of explaining the christian doctrine of the resurrection of the flesh: since eternal life takes place within a physical body, the soul will sooner or later have to rejoin our mortal “transfigured” body. now, at the basis of this conception there is the prin- ciple that the mortal body must not be seen as a cumbersome material shell . international theological commission, § – . . catechism of the catholic church, accessed december , , vatican.va, . . thomas aquinas, summa theologiae, i, q. , a. . a rapture of the nerds? that sooner or later will need to be discarded to allow the soul to rejoin god, but as the “temple of the holy spirit,” according to st. paul’s state- ment in his first epistle to the corinthians. in the words of the apostolic constitution gaudium et spes: though made of body and soul, man is one. through his bodily composition he gathers to himself the elements of the material world; thus they reach their crown through him, and through him raise their voice in free praise of the creator. for this reason man is not allowed to despise his bodily life, rather he is obliged to regard his body as good and honorable since god has created it and will raise it up on the last day.  transhumanist eschatology offers a possible solution through the idea of a perfect emulation of human minds inside a perfect simulation of the universe, as in tipler’s omega point theory. if, inside such a simulation, a human emulation accepts the world he/she live in as the real world, the “gnostic temptation” would be avoided, since the emulation would experience the simulated world through its emulated body and its emu- lated senses. oxford philosopher nick bostrom is the main theorist of the simulation hypothesis, that argues that a sufficiently advanced technologi- cal civilization would sooner or later produce an emulation of the brain and then a completely simulated reality where brain emulations could live their “transhuman” existence.  avoiding the implication of bostrom’s argument, that is, the possibility that even our own reality could be a computer simulation,  it is interesting to note that bostrom, initially one of the main theorists of transhumanism, later distanced himself from it, because of his fears about the “existential risks” associated with the rise of an artificial “superintelligence” that could lead the human species to extinc- tion (“there is so much cheerleading of technology in transhumanism, so much unquestioning belief that things will just exponentially get better, and that the right attitude is just to let progress take its course. these are attitudes i have distanced myself from over the years.”  ) in his book super- intelligence, bostrom considers different ways to reach superintelligence: the development of an artificial intelligence (we could say, the traditional . vatican council ii, gaudium et spes, . . nick bostrom, “are you living in a computer simulation?,” the philosophical quarterly , no. (april ). . roberto paura, “living in the matrix: how a scientific conjecture was turned into a conspiracy theory,” messages, sages and ages , no. ( ). . mark o’connell, to be a machine (london: granta books, ), . roberto paura way), the whole brain emulation (the one he explored in the study with sandberg), biological cognitive enhancement, brain-computer interfaces (an approach currently studied by elon musk’s neuralink), the strengthen- ing of networks and organizations that can spontaneously bring out a form of self-awareness. bostrom considers the first two solutions more credible than the others, and in particular the first safer than the second. in fact, in the case of the development of an ai, we should be able to control its gra- dual development from a “seed” of artificial consciousness, guiding  its evolution so that future superintelligence can have an ethics in line with human ethics. conversely, the emulations of the human brain, relying on the “brute force” of calculation to produce imitations of our brain without really understanding its mechanisms, would risk escaping our control and acquiring objectives and aims that differ from ours.  bostrom suggests that emulations have a very good chance of replac- ing the human species. the example he uses is that of horses, quickly replaced, with the rise of machines, to the point of significantly reducing the number of existing specimens: from million in to only mil- lion in the s in the united states.  this is because emulations would be used to replace most of our jobs; if there is a link between population growth (or more precisely, between the fertility rate) and labour supply, the decreasing of the latter will inevitably decrease the population. actually, this is what is already happening in western societies, where a highly labour-intensive economy such as subsistence farming and, subsequently, industry, which pushed families to give birth to a large number of children, has been replaced by a highly automated economy which makes children no longer a potential economic resource, but a burden. bostrom believes that the emulations will be much more efficient than human workers, be- ing able to operate / without holidays, work permits, illnesses, distrac- tions of any kind. considering that these are emulations, with a certain level of self-awareness, bostrom admits that in such a scenario there will be voices against their enslavement, or that the same emulations could revolt. however, in this case it would be enough to reset the program- ming at the end of each day to make them forget the experience of the past, or instill in their programming a further stimulus to stakhanovism, to overcome these problems.  . nick bostrom, superintelligence: paths, dangers, strategies (oxford: oxford university press, ), . . ibid., . . ibid., – . a rapture of the nerds? the essential question raised by these considerations is: do emulations really exist, that is to say do they live in a completely analogous way to how we live as living beings? in addressing this question, on whose affirmative answer his theory of the omega point is based, frank tipler argues that in a perfect simulation indistinguishable from the real world emulated people have no way of believing that their actions and thoughts are mere emula- tions of the actions and thoughts of real human beings, since they imitate them in all aspects. but is this imitation enough to sustain its authenticity? tipler invokes the principle of the identity of the indiscernible, introduced by leibniz in the th century: entities which cannot in any way be distin- guished from one another must be considered identical. therefore, in the presence of a sufficiently perfect simulation of a living being, it is correct to claim that this being is alive.  it follows that the emulation of myself, through the possibility of uploading my pattern on a far-future computer, is alive exactly as i am now and that, by possessing my own memories, it is actually a continuation of myself. therefore, if at the end of time the omega point were to prove capable of creating perfect emulations of each of us even after eons from our death (since it should be able theoretically to retrace our information dispersed in the universe), this would be exactly the eternal life promised by the parousia. however, although there are several more or less serious projects dem- onstrating the technical feasibility of mind-uploading (the most famous and controversial is the russian dmitry itskov’s initiative ), the scientific community is now faced with the problem of how to develop distinctly human intellectual abilities, such as ethics and empathy, within today’s artificial systems, such as neural networks. these systems certainly partly emulate the mechanisms underlying human learning, but they prove ef- fective only in the presence of routinely and easily automated tasks, for example facial recognition or text translation, in which the “brute force” of calculation counts more than intuition, the basis of human intelligence. solving this problem is essential for those who hope for the possibility of developing the emulations through which our species will survive in the distant future. in fact, a perfect emulation of a human being must not be limited to the reproduction of logical and cognitive inner processes but must be able to feel empathy and share ethical values with other emulations. only in this case could the replicated human being be considered substantially indistin- guishable from the original, and only in this case could the transhumanist . tipler, – . roberto paura eschatology avoid blatant contradictions with christian eschatology. the philosophers of science paul dumouchel and luisa damiano have tackled the problem by analyzing the development of social robotics, the branch of robotics that deals with the creation of artificial human companions, essentially for purposes of medical and psychological care. social robot- ics is based on the (questionable) assumption that care work, hitherto an exclusive duty of humans, can in the future be automated, given that, in a scenario of progressive population ageing, the number of people needing continuous care will increase inexorably, while the work supply in this sec- tor will decline. therefore, replacing human caregivers with robotic agents seems to be the most appropriate solution, while transhumanists see it as an intermediate step in the affirmation of a hybrid human-machine species. it is no coincidence that dumouchel and damiano use the term substitutes to refer to these artificial agents, although they specify that a substitute “covers the role of another person, but only partially—only in some cases, in certain aspects and at certain times.”  be that as it may, the main obstacle to the realization of such substitutes is the feasibility of emulating human empathy. this stems from the fact that we do not yet have a real understanding of the mechanisms of the mind, in particular we do not have an agreed theory of mind, which can explain the physiological processes through which humans and different other animal species understand that others have different mental states from their own, capable of producing beliefs, intentions, desires, emotions and knowledge. paro, a robot with the features of a baby seal, is used for therapeutic purposes in elderly patients or children who need emotional support (pet therapy). paro behaves like a perfect pet, produces verses, is happy if you caress it and cries surprised if you treat it badly, makes funny expressions, is soft, responds if you call it. unlike a pet, however, it doesn’t run away, you don’t have to chase it or look for it at home, it doesn’t need to eat, it doesn’t dirty, it doesn’t get sick, it has antiseptic hair. tests show that patients benefit from its presence. yet, paro can’t exceed his programming, can’t surprise its patients or do something unpredictable. it completely lacks the primary component that we attribute to other liv- ing beings, that is, an autonomous will, which derives from the possibility of possessing mental states that cannot be predicted by external subjects. a cat that, instead of playing with its master, prefers to lick its own hair, even though it represents a source of frustration, shows in that moment . paul dumouchel and luisa damiano, vivere con i robot. saggio sull’empatia artificiale (milan: raffaello cortina, ), . a rapture of the nerds? that it is equal to a human being, that is to say, like humans, it is a living being endowed with its own will. but intentionality poses very serious problems: it means possessing intentions autonomous from the creator-designers as well as being able to conceal these intentions from external observers. there is no doubt that only in this case we would be faced with a complete substitute for a human being: alan turing, at the dawn of computer age, suggested that the key test for recognizing an authentic artificial intelligence was its ability to deceive an observer, effectively emulating the behavior of a human intel- ligence. theorists of the existential risks are well aware of this problem. nick bostrom, in his book superintelligence, deals precisely with the theme of how to endow ais with intentionality while avoiding the possibility that they mislead human beings to the point of developing plans for becoming independent from their creator-programmers, a scenario that could lead to the intentional destruction of the human species, considered an obstacle to the full autonomy of superintelligence. to solve the problem, bostrom argues that we should “load” onto emulations the shared ethical values of our species. nothing more difficult: how to express these values, for exam- ple the aspiration to happiness, in programming language? in the case of emulations, which are based on the imitation of our mental processes, one solution could be to strengthen and increase mental states that correspond to the main values shared by our community.  however, this is a risky solution, since shared values change over time: slavery was considered normal until the nineteenth century, racism was shared by most of the west for much of the twentieth century, and at par- ticular times in recent history orientations such as eugenic selection or the death penalty were considered positively. in the future, our species could, for example, embrace anti-speciesism as a shared ethical value: should we keep this in mind when uploading (or strengthening) values on a computer emulation? inevitably, we should let emulations be able to learn autono- mously and choose autonomously those values they deem most appropria te. but this solution falls again on the risk of an intentionality different from the human one. in short, it seems evident that, in order to obtain a per- fectly self-aware and intelligent emulation, it should be embedded with the capacity to become free from its programming and therefore from human control, with the serious risk of creating a new artificial species that, instead of being willing to accept the disembodied consciousness of human beings subjected to mind-uploading in a common virtual environment, replaces . bostrom, superintelligence, . roberto paura the human species as a whole. dumouchel and damiano observe that the uncanny valley hypothesis (that says that beyond a certain threshold of similarity of an artificial substitute to its human original, the human re- action is of horror and rejection) places constraints on the possibility of making complete substitutes, because it shows that humans are naturally hostile to the idea of living with perfect emulations of themselves.  we should therefore consider the possibility that, for a series of reasons, not just of technical-scientific nature, the feasibility of an emulation with au- tonomy and intentionality will never be achieved. conclusions what does this conclusion suggest for the perspective of transhumanist es- chatology? as we have seen, this vision shares with the incarnatio nist view of christian eschatology faith in a future transfiguration of humans and of the whole universe, likely through the achievement of a perfect hu- man brain emulation, so as to allow the uploading of the pattern of each person on a computer support, ensuring their immortality, at least in a virtual environment. on a theoretical level, the feasibility of this idea is based on the conviction that a perfect artificial emulation is substantially indistinguishable from the original, so that a perfect emulation of a hu- man person would be the natural continuation of their existence, albeit in a virtual environment. there is also a current of thought that argues that the human species can be replaced by a completely artificial species, based on emulations: homo sapiens would leave the throne of creation to this new species, with the aim of extending intelligence to the whole universe until it changes the same fundamental laws of physics. polish science fic- tion writer stanislaw lem, in his summa technologiae, imagined a future where our species transmits not the neural pattern of each individual, but its dna (intended as a “source code”), to this new artificial species, so as to ensure survival within a virtual environment, a simulation that would run on huge supercomputers placed in orbit around the sun, where the efficiency of calculation processes would be optimized.  still, undeniable obstacles to this scenario persist. so far, all the emu- lations that we are able to create or imagine are only trivial imitations programmed for this purpose. social robots imitate human emotions, and although certain positive effects have been demonstrated in the well-being . dumouchel and damiano, vivere con i robot. saggio sull’empatia artificiale, . . stanislaw lem, summa technologiae (minneapolis: university of minnesota press, ), – . a rapture of the nerds? of people assisted by such substitutes, such a programmed imitation has nothing to do with genuine emulation. far from being close to creating a new intelligent species, technology is now able to create homunculi, which in the alchemical tradition were imagined as “miniature” versions of hu- man beings, pathetic and disturbing imitations created to be placed at the service of their creators. at the same time, should we be able to obtain self-conscious, autonomous and intentional emulations, they would become something totally different from the original, to the point of creating a new species that is unlikely to have any intention of hybridizing with ours. transhumanist eschatology is doomed to clash with the problem of the emulation of what most authentically defines the human person. if the in- tra-worldly immortality promised by transhumanism can only be guaran- teed through an escape into the virtual reality of cyberspace, the simulation we will obtain would be inexorably inauthentic, because the emulations that will live there would never be really alive, but only pale imitations, simi- lar to puppets, as such linked to their creators and animators in order to function. the future of transhumanism is therefore a non-human future, where the intelligence that will survive, of an artificial nature, will be condemned to repeat endlessly a programming set by programmers who have disappeared, to imitate the thoughts and behaviors of irreplaceable extinct beings: it will be a false intelligence, which will not be able in any case to guarantee our survival in time. this conclusion seriously questions the idea of a reconciliation between transhumanism and christian eschatologies, but it also undermines the coher- ence of the incarnationist vision. undoubtedly, the techno-scientific progress of human civilization aims at the growth of automation, the reduction of the human person to algorithms, and the technological enhancement of body and mind to better compete with the rise of artificial intelligence. this vision of the future is far removed from that of the christian parousia, in which the human being is called to become an imitation of christ: rather, it offers an earthly utopia that does away with any space for transcendent, even reduc- ing the transcendent to physical laws, as in tipler’s omega point theory. on the other hand, if one were to accept the eschatologist’s vision of parousia, which completely ignores the events of history by imagining the advent of the kingdom completely independently of the cosmological reality we live in, the risk would be that of a reckless disregard for the different trajectories the human future could assume in the coming decades and centuries, depriving christians of any responsibility from their earthly choices. between these two visions, moltmann’s intermediate proposal emerg- es as a possible solution. as moltmann affirms, the intra-world utopias, roberto paura exemplified in bloch’s “principle of hope,” urge man not to take the pre- sent for granted, but to oppose “the presumed ineluctability of its laws of evil and death,” similarly to what transhumanism pursues; however, these utopias acquire meaning, from the christian point of view, only if they are integrated by the “trustful certainty” given by god’s promise: in the utopian horizons open to any possibility, it will recognize and show the necessary things. in this way eschatological hope becomes a driving force of history in favour of the creative utopias of love for the suffering man and his imperfect world, moving towards the unknown but promised future of god.  bibliography balthasar, hans urs von. escatologia del nostro tempo. le cose ultime dell’uomo e il cristian- esimo. brescia: editrice queriniana, . barbrook, richard, and andy cameron. “the californian ideology.” science as culture , no. (january ): – . barrow, john d., and frank j. tipler. the anthropic cosmological principle. new york: oxford university press, . bostrom, nick. “are you living in a computer simulation?” the philosophical quarterly , no. (april ): – . —�. superintelligence: paths, dangers, strategies. oxford: oxford university press, . brancato, francesco. il futuro dell’universo. cosmologia ed escatologia. milan: jaca book, . cannon, lincoln. “theology may become a science of superintelligence.” on lincoln can- non official website, http://lincoln.metacannon.net/ / /theology-may-become-sci- ence-of.html dumouchel, paul, and luisa damiano. vivere con i robot. saggio sull’empatia artificiale. milan: raffaello cortina, . dyson, freeman j. “time without end: physics and biology in an open universe.” reviews of modern physics , no. (july–september ): – . galot, jean. “il destino finale dell’universo.” accènti ( ): – . hanson, robin. the age of em: work, love, and life when robots rule the earth. oxford: oxford university press, . harari, yuval noah. homo deus: a brief history of tomorrow. london: harvill secker, . hefner, philip. “the evolution of the created co-creator.” currents in theology and mission , no. (december ): – . international  theological  commission. “communion and stewardship: human persons created in the image of god.” . kurzweil, ray. the age of intelligent machines. cambridge, ma: mit press, . —�. the singularity is near. new york: viking, . lem, stanislaw. summa technologiae. minneapolis: university of minnesota press, . . jürgen moltmann, “il ‘principio speranza’ e la ‘teologia della speranza’: dialogo con ernst bloch,” in teologia della speranza (brescia: queriniana, ), – . http://lincoln.metacannon.net/ / /theology-may-become-science-of.html http://lincoln.metacannon.net/ / /theology-may-become-science-of.html a rapture of the nerds? macquarrie, john. principles of christian theology. new york: charles scribner’s sons, . moltmann, jürgen. “il ‘principio speranza’ e la ‘teologia della speranza’: dialogo con ernst bloch.” in teologia della speranza. brescia: queriniana, . —�. theologie der hoffnung. münchen: chr. kaiser verlag, . morozov, evgeny. to save everything, click here: the folly of technological solutionism. new york: publicaffairs, . neumann, john von, and arthur w. burks. theory of self-reproducing automata. urbana, il: university of illinois press, . o’connell, mark. to be a machine. london: granta books, . paura, roberto. “living in the matrix: how a scientific conjecture was turned into a conspiracy theory.” messages, sages and ages , no. ( ): – . prisco, giulio. “christianity and transhumanism are much closer than you think.” the turing church website, http://turingchurch.com/ / / /christianity-and -transhumanism-are-much-closer-than-you-think/. russell, robert j. “la dottrina della creatio ex nihilo in relazione al big bang e alle cosmologie quantistiche.” translated by monica rimoldi. in l’uomo alla ricerca della verità. filosofia, scienza e teologia: prospettive per il terzo millennio. conferenza internazionale su scienza e fede. città del vaticano, – maggio , – . milan: vita&pensiero, . sandberg, anders, and nick bostrom. “whole brain emulation: a roadmap.” technical report # - , future of humanity institute, oxford university . sanna, ignazio. fede, scienza e fine del mondo. come sperare oggi. brescia: editrice querini- ana, . tanzella-nitti, giuseppe. “creation.” in inters—interdisciplinary encyclopedia of religion and science, edited by giuseppe tanzella-nitti, ivan colagè and alberto strumia, . tegmark, max. life . : being human in the age of artificial intelligence. new york: double- day, . teilhard de chardin, pierre. the phenomenon of man. new york: harper perennial, . —�. “two principles and a corollary (or a weltanshauung in three stages).” in toward the future. new york: harcourt, . tipler, frank j. the physics of immortality: modern cosmology, god, and the resurrection of the dead. new york: anchor books, . vatican council ii, gaudium et spes. accessed december , . vatican.va. young, ed. “the human brain project hasn’t lived up to its promises.” the atlantic, july , . young, george m. the russian cosmists: the esoteric futurism of nikolai fedorov and his followers. oxford: oxford university press, . the canadian journal of neurological sciences pathological changes in syphilis, subacute combined degeneration, poliomyelitis and friedreich’s ataxia but not cervical spondylosis or trauma. approximately the same amount of coverage is given to hereditary disorders of lipid metabolism as to head injury. t h e selection of spinal fractures is representative rather than extensive. almost all of the neuropathology presented could have been presented a decade or more ago and little attention is paid to recent advances in molecular neuropathology. for example, spinocerebellar atrophies and hereditary peripheral neuropathies are classified eponymously by symptoms rather than by the underlying genetic defect. in this respect, the claim on the back cover that the book provides “updates on rapidly evolving research and clinical advances” is difficult to justify. as stated by bryce weir in his foreword, the book could be very useful to a medical student or resident preparing for a multiple choice examination. it fills a niche in complementing textbooks with a more systematic, contemporary, and clinical approach. pm richardson london, uk limbic seizures in children. mariani foundation pediatric neurology series: . . edited by giuliano avanzini, anne beaumanoir, laura mira. published by john libbey & company ltd. pages. c$ . approx. this book has chapters based on a colloquium “to outline the specific expression of epilepsies involving the limbic structures in children and to establish a consensus on the evidence relevant to the clinical management of these epilepsies”. the book is technical and not an easy read. it will likely be of interest to experts in epilepsy centres but not to the more casual reader. the organization of the chapters is a bit unclear. the first four chapters are devoted to the anatomy, circuitry and some of the basic epilepsy pathways in the limbic system. we learn that malformations in the temporal lobe can allow seizure discharge to jump from the allocortex to the neocortex. the embryology of the limbic system is discussed but developmental aspects of limbic neurophysiology receive little attention. next a chapter by spencer and colleagues defines the clinical syndrome of mesial temporal lobe epilepsy and suggests that it may be different in adults and children. they suggest that mesial temporal sclerosis is a progressive lesion because the sprouting of mossy fibers is seen in adult pathology but not in early childhood. chapters through concentrate on various clinical features of limbic seizures and generally conclude that these features are often seen in children. there is a masterful analysis of “loss of consciousness” versus “loss of contact” as the defining feature of complex partial seizures by the late claudio munari who was known for his provocative questioning of our current terminology and classification. vegetative, motor, autonomic, language and motor manifestations are discussed in separate chapters. we learn of perisylvian spread, involvement of the insula, and distinctions between frontal and temporal seizures. there is a short review of the role of febrile seizures as the cause of mesial temporal sclerosis. given the huge amount of controversy about this issue over the past years, it was disappointing not to see more. in p a r t i c u l a r, the issue of dual pathology is mentioned but not amplified. a series of chapters focus on memory disturbance, psychic experiences and perceptual/intellectual issues. the famous series of ounstead is critiqued for selection bias and the large proportion of children with mental handicap. ictal depth recordings, spect and mri are described. even though a major aim of the book was to analyze treatment, there is only a single chapter devoted to medical therapy in children. unfortunately there are few randomized trials to turn to, especially with newer medications. a four-page chapter discusses surgical treatment without any references or literature review. a rambling chapter tries to come to grips with the presence of benign limbic epilepsy in childhood. in general, the illustrations are good. the pitch of the text, especially for the summaries, is very small – bifocals are needed! the vocabulary is sometimes challenging often without definitions – loco-regional, horripilation, recurrent collateral sprouting, rubefaction, projective motricity, intercritical discharge – to name a few. the book struggles with the relatively small literature on this subject that is truly related to children. most clinical series have fewer than children and many of the chapters concentrate on fewer than studied cases. most of the cases discussed come from outstanding european expert centers that focus on intractable epilepsy. there is apparently much less written about the more common, controllable limbic epilepsies in children. at least half of the book emphasizes experiences with adults. my enthusiasm for this book is somewhat limited. it does, however, point out the need for more careful studies, particularly clinical studies, of partial epilepsy in childhood. it is apparent that we need better definitions, better methods of investigation and above all, more collaboration in randomized treatment studies. peter camfield halifax, nova scotia pathogenesis of neurodegenerative disorders. . edited by mark p. mattson. published by humana press. pages. c$ . approx. the title of this book is somewhat misleading. first, it does not deal exclusively or comprehensively with disorders typically classified as “neurodegenerative”. second, it does not cover disease pathogenesis in a broad sense, but focuses quite specifically on a few final mechanisms of neuronal cell death. the first two chapters provide good overviews of the molecular and biochemical events involved in apoptosis and oxidative injury. each subsequent chapter deals with a specific neurologic disease, in detail. although a few of the authors provide a more balanced view, most concentrate on cataloguing the markers of oxidative stress and/or apoptosis which have been identified in postmortem tissue with less emphasis on the preceding events which are probably more disease specific. individual chapters are devoted to a l z h e i m e r’s disease, parkinson’s disease, huntington’s disease and amyotrophic lateral sclerosis, h o w e v e r, there is no mention of dementia with lewy bodies or less common neurodegenerative conditions such as pick’s disease, progressive supranuclear palsy, or the multiple system atrophies. while the chapter on ischemic stroke helps to define the importance of oxidative injury in the broader scope of neurological disease, the final two chapters dealing with spinal cord injury and duchene muscular dystrophy seem out of place. the text is well-referenced and illustrations are limited to a few useful diagrams and flow charts. i agree with the editor’s opinion that this text will be a useful https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/ . /s https://www.cambridge.org/core https://www.cambridge.org/core/terms depression and the psychosis and agitation in dementia. correlation of behaviour with the anatomy of neurodegeneration in the different dementias provides insights of potential use in therapy. t h e penultimate chapter by marson and briggs provides an informative review of competency and its neuropsychologic assessment in dementia, citing their recent studies in this new field research. vo l i c e r’s chapter, perhaps unavoidably, last reviews issues in management arising in the late stages of dementia. few patients die in a persistent vegetative state so that provision of meaningful activities and sensory stimulation is a requirement for most patients. among medical, behavioural and caregiver issues, i found that his discussion of tube feeding very informative. professionals interested in dementia will find something of interest here in their own fields as well as enlightenment in the related disciplines. unlike other annual collections of reviews, this one is well-indexed. i found some irritating redundancy in exposition, suggesting a need for greater use of the red pencil by senior authors and editors. figures are well-reproduced (chapters and ), except that a blow up of medial temporal lobe images in chapter would have been helpful. john r. wher rett toronto, ontario basal ganglia and thalamus in health and movement di s o r d e r s. . edited by k. kultas-ilinsky, i.a. ilinsky. published by kluwer academic/plenum publishers, new york. pages. c$ . approx. this text is notable for the authors selected. there is a “who’s who” of movement disorders beginning with anne young, jack penney and mahlon delong and including the toronto we s t e r n hospital group (including jonathan dostrovsky, william hutchison, karen davis and andres lozano). do not be put off by the dry title. there is vertical integration from basic science to clinical application. for those who wondered how pallidotomy works in parkinson’s disease when the classic model of basal ganglia predicts chorea or excessive movement, the answers are approached in these chapters. there is logical division of the formidable topic into historical perspectives, anatomical and functional org a n i z a t i o n , neurotransmitters, receptors and their role in motor behavior, movement and sleep disorders, plasticity in movement disorders, neuronal activity in movement disorders, mechanisms and efficiency of novel treatment for movement disorders. each section is further divided into chapters that touch upon every aspect of basal ganglia and thalamic circuitry and their implications in movement disorders. the chapter on microcircuits could benefit from more diagrams, the text itself being quite dense. whereas, the chapter on local and efferent neurons has lavish histochemistry panels that add to its comprehension. the editors’ chapter dealing with primate organization and connection of the motor thalamus is well-organized and well-written. the subject matter is key to understanding the organization of the basal ganglia and thalamus. the sections on plasticity in movement disorders and neuronal activity in movement disorders deal with primate and human studies. these findings explain much of the paradox of the classic basal ganglia model. finally, there is a brief transcript of discussions from the meeting on which this work is based. le journal canadien des sciences neurologiques volume , no. – may reference for graduate students and postdocs beginning a research career in this specific area, but feel it is probably too focused and unbalanced to be of general interest to senior scientists and clinicians. ian r.a. mackenzie vancouver, british columbia alzheimer’s disease and related disorders annual . edited by serge gauthier and jeffrey cummings. published by martin dunitz. pages. c$ . approx. what is common to β-pleated sheets and pet therapy or to axial flair and the neuropsychology of the capacity to consent? well, it is all in a day for those specializing in dementia and for the editors of an annual collection of reviews and essays in this field. this is the second annual collection edited by gauthier and cummings (unfortunately, contents of the first annual collection are not listed) and is as eclectic as any deliberation in the field or indeed as in any field in medicine. the untoward deterioration of manifold higher brain functions with aging now has the attention of clinical professionals and researchers from a remarkably wide range of disciplines that reflect the complexity of both the etiology and pathogenesis and management. t h i s management in wide measure needs to consider the social setting of the a ffected individual. early chapters address etiology and pathogenesis and pharmacotherapy of particular interest to neurologists and neuropathologists; three chapters address depression, behavioural manifestations of interest to neuropsychiatrists and psychiatrists, and a final chapter addresses geriatricians and family physicians caring for patients in the later stages of debility. i first read chapter by scheltens on neuroimaging, hoping for clarification of the indications in diagnosis. recent studies of mesial temporal atrophy, regional cortical atrophy and white matter change have given conflicting results that suggest that findings will mainly support what is clinically obvious. although research studies superimposing mri and pet or spect appear to give greater precision in detection of a l z h e i m e r’s disease, guidelines of the american academy of neurology recommend against use of metabolic imaging in daily practice. there is room for considerable skepticism about the value of imaging of conditions where multiple pathologic processes appear to intersect. one of these processes that i suspect enters discussion in the memory clinic i n f r e q u e n t l y, amyloid angiopathy, is thoughtfully reviewed by vi n t e r s . we learn that the amyloid does not form in the vessels of the white matter although leukoencephalopathy is seen in some forms. we also learn that % of patients dying with a l z h e i m e r’s disease will be found to have cerebral hemorrhages. the possibility that effective disease-modifying therapies are in sight is reflected in two chapters. the first by cole provides a detailed discussion of mechanisms of amyloid formation and disposal and the second by peterson reviews “mild cognitive impairment”, the term used to include subjects exhibiting the earliest manifestations of alzheimer’s disease and most likely to benefit from these therapies. this latter syndrome is identified through clinical judgement and the development of a definition suitable for clinical studies will require some ingenuity. one of the editors, gauthier, reviews studies of cholinergic agonists that have been overshadowed by the recent success with cholinesterase inhibitors. it is too early to abandon this approach to symptomatic therapy. the other editor, cummings, contributes to one of three chapters updating well-trod approaches to diagnosis and therapy of https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/ . /s https://www.cambridge.org/core https://www.cambridge.org/core/terms microsoft word - ubc_ _fall_nitkin_patricia.docx being there: relationships between people with cancer and their pets what helps and what hinders by patricia nitkin b.a. mcgill university, m.a. university of british columbia, a thesis submitted in partial fulfillment of the requirements for the degree of doctor of philosophy in the faculty of graduate and postdoctoral studies (counselling psychology) the university of british columbia (vancouver) march, © patricia nitkin, ii abstract this qualitative research examined the little studied area of human-pet relationships and their impact on persons with cancer. the goal of this study was to gather information from individuals with cancer who had a pet during their illness and to explore the helpful and unhelpful aspects of that relationship as people dealt with the socio-emotional, physiological and spiritual challenges usually accompanying cancer diagnosis and treatment. the enhanced critical incident technique method (butterfield, borgen, maglio, & amundson, ) was used to collect information and interpret the interviews of british columbian women with cancer about their relationships with their companion animals. from these interviews, personal accounts were created to give voice to the women’s experiences. the bulk of the data focused on clear descriptions of the ways in which pets contributed to and/or detracted from the participants’ sense of wellbeing during their illness. from this helping critical incidents and hindering critical incidents were formed into categories that represented the areas of impact. in rank order of participation rate the categories are: companionship & presence; emotional & social support; purpose & role; how pets are different from people; health and pain management; pet intuition & adaptability; being positive & in the moment; pet as protector & caregiver; touch; unconditional love & devotion; existential & spiritual factors; family members & finances, and caretaking of sick or dying pet. the findings of the study are congruent with the literature from the fields of veterinary medicine, social work, nursing, and anthrozoology in that they confirm the significant and primarily positive impact of the social support, trust and bond experienced by human beings from their companion animals. the results also indicate the distress caused by the lack of resources for pets when one is ill and the suffering caused by pet illness and bereavement. other iii unique findings include participants’ experience of their pets as able to intuit subtle changes post-diagnosis and instantly modify their behaviour to attend to their human companions. it is recommended that psychological and psychosocial oncology theory, practice and research engage with further exploration of the relationships between people and their companion animals. iv preface this dissertation is an original intellectual product of the author, p. nitkin. the fieldwork reported in chapters - was covered by ubc ethics certificate number h - . v table of contents abstract .............................................................................................................................. ii preface ............................................................................................................................... iv table of contents .............................................................................................................. v list of tables ..................................................................................................................... x list of figures ................................................................................................................... xi acknowledgements ......................................................................................................... xii chapter : introduction ............................................................................................. overview ............................................................................................................................ background of the study .................................................................................................. rationale ............................................................................................................................ human animal bond (hab) ...................................................................................... connecting the hab to cancer care ......................................................................... significance of the study .................................................................................................. purpose of the study ......................................................................................................... study design method ........................................................................................................ summary of chapter i .................................................................................................... chapter : literature review .................................................................................. overview .......................................................................................................................... historical perspective of human-animal studies ....................................................... psychology research relating to the hab .................................................................... animal-assisted therapy ............................................................................................... research on the health and psychosocial effects of companion animals ............... health effects ............................................................................................................. psychosocial effects ................................................................................................... problems with pets ..................................................................................................... the cancer experience .................................................................................................. psychosocial oncology ............................................................................................... coping and psychosocial adjustment ...................................................................... social support ............................................................................................................ wellbeing .................................................................................................................... vi non-verbal communication and touch .................................................................. attachment theory ......................................................................................................... adult attachment ....................................................................................................... attachment and companion animals ...................................................................... counselling psychology applications ............................................................................ companion animals as a source of positive emotion ............................................ conclusion ....................................................................................................................... chapter : method ................................................................................................... overview .......................................................................................................................... suitability of the enhanced critical incident technique ........................................... researcher positionality ................................................................................................. epistemology and ontology ...................................................................................... humanistic model and unique application to hab research ............................. situating the researcher and personal reflexivity ................................................. origins of the critical incident technique and ecit ................................................ study procedures ............................................................................................................ participant selection criteria ................................................................................... ethical considerations .............................................................................................. recruitment ............................................................................................................... interviews .................................................................................................................... informed consent ...................................................................................................... honoraria .................................................................................................................... participants ..................................................................................................................... data collection and analysis ......................................................................................... five steps in conducting ecit ..................................................................................... step : ascertaining the general aims of the activity being studied ...................... step : making plans and setting specifications ..................................................... step : data collection ............................................................................................... interviews ............................................................................................................... data management .................................................................................................. step : data analysis .................................................................................................. vii step : interpreting the data & reporting results ................................................... participant personal accounts .............................................................................. ecit credibility checks ........................................................................................ independent extraction of critical incidents ......................................................... cross-checking by participants .............................................................................. placing incidents into categories by an independent judge.................................. exhaustiveness ....................................................................................................... expert opinions ...................................................................................................... theoretical agreement ........................................................................................... participation rates .................................................................................................. descriptive validity ................................................................................................. interview fidelity ..................................................................................................... representation of findings ....................................................................................... summary of chapter iv ................................................................................................. chapter : findings ................................................................................................... overview .......................................................................................................................... participant personal accounts ....................................................................................... participant # : anna and her dog jack ................................................................... participant # : stacey and her dog fluffy .............................................................. participant # : joanne and her dogs timmy and meisha ..................................... participant # : lila and her dog louie .................................................................... participant # : daisy and her dog haro .................................................................. participant # : alice and her dogs coral and mini ................................................ participant # : barbara and her dog prince ........................................................... participant # : clair and her dogs zeus and zena ................................................. participant # : mona and her cat gris ..................................................................... participant # : ruth and her dog brownie ........................................................... participant # : maria and her dog cookie ............................................................ participant # : lucky and her dog sugar ............................................................. participant # : sarah and her dogs ganesh and lakshmi .................................. defining wellbeing in the context of cancer ............................................................... wellbeing categories ................................................................................................. viii . peace of mind ......................................................................................................... . social support ........................................................................................................ . taking care of my emotional needs ................................................................... . resolving to beat cancer ...................................................................................... . putting my physical needs first ........................................................................... . personal growth & purpose ................................................................................. critical incidents and categories .................................................................................. . companionship & presence .................................................................................. . emotional & social support ................................................................................. . purpose and role ................................................................................................... . how pets are different from people ..................................................................... . health and pain management .............................................................................. . pet intuition and adaptability ............................................................................ . being positive and in the moment ...................................................................... . pet as protector and caregiver ........................................................................... . touch ..................................................................................................................... . unconditional love & devotion ....................................................................... . existential and spiritual factors ...................................................................... . family members and finances ........................................................................ . caretaking of sick / dying pet .......................................................................... summary of chapter iv ............................................................................................... chapter : discussion .............................................................................................. overview ................................................................................................................... comparisons to relevant scholarly literature .................................................... participants and their pets ...................................................................................... participant personal accounts ............................................................................... defining wellbeing in the context of cancer ........................................................ helping categories ................................................................................................... social support ...................................................................................................... attachment theory .............................................................................................. ix helping categories in relation to research and theory .......................................... companionship and presence ................................................................................... emotional and social support ................................................................................... purpose and role ....................................................................................................... how pets are different from people .......................................................................... health and pain management .................................................................................. pet intuition and adaptability ................................................................................... being positive and in the moment ............................................................................ touch ......................................................................................................................... existential and spiritual factors ............................................................................... family members and finances .................................................................................. hindering categories .................................................................................................... recommendations for future research ..................................................................... implications of study .................................................................................................... counselling psychology theory and clinical practice ......................................... psychosocial oncology ............................................................................................. public policy ............................................................................................................. process of conducting the study ................................................................................. limitations of the study ............................................................................................... conclusion ..................................................................................................................... references ...................................................................................................................... appendix a: recruitment poster ................................................................................ appendix b: information letter for prospective participants ................................. appendix c: recruitment email to colleagues and friends .................................... appendix d: informed consent form ........................................................................ appendix e: interview guide ...................................................................................... appendix f: demographics and biographical information ..................................... appendix g: participant check letter ....................................................................... x list of tables table : participant demographics and biographical information ................................. table : participation rates for categories, critical incidents and wish list items ...... xi list of figures figure : research model for psychosocial and quality of life research in oncology……… xii acknowledgements i thank my committee members drs. buchanan, borgen and westwood for their guidance and support. i feel so fortunate to have had marla on my side…your compassion, wisdom and kind heart kept me going. bill, what an honour to work with you- your careful attention to content, process and detail made me feel my work was of merit. marv, i thank you for always being supportive. i also express my gratitude to karen yan for all your help over the years. finally i am ever grateful to the team at bcca for supporting me with this project. i feel honoured to have met and heard the stories of the participants and your pets in this study~ you are courageous and profound women. thank you for sharing your experiences – they have inspired me and likely will do the same for others. over the years i have had the privilege of working and experiencing life with many individuals and families ~ being in the presence of life, death, hope, love, suffering, care, despair and the “overcoming of it.” (helen keller). all of you have taught me much of what i know, and shown me the way. i thank you deeply. dear sammie and george- your beautiful faces, soft nuzzly furry ears & eyes filled with expression, and your mysterious and constant companionship. thank you for loving to run around joyfully, letting me watch and join in sometimes, and especially for ceaselessly cuddling & wagging your tails and staying by me in times of difficulty- you are gifts of healing and joy. “how lucky can a gal be?” i am so grateful to my family and friends for loving me, helping me, making me smile, cajoling me, listening to me kvetch, and especially for believing in me…anton, roberta & eric, elaine & gerry, susan & jeff, steve & bonnie, rob & arlene, ali, irv and betty, mark, krista, dodo, lorne, heidi, lucy, annette and lisa…i love you all. i have had the amazing good fortune to have had two extraordinary dads, ralph and herb, and one beautiful mother pearl, all of whom i think smiled down upon me from time to time during this journey in this lovely house you all left for me to feel safe and sound in. i am also thankful for, and shall never take for granted, the many amazing and mysterious animals beyond man’s usual companions that bring to me a sense of love and curiousity, and their natural habitats like the mountains and oceans that bring me a sense of awe and peace. within these realms, i have found freedom, beauty, laughter, and healing. and thank you for love. i hope everyone gets as much as i have ♥. chapter introduction "compassion, in which all ethics must take root, can only attain its full breadth and depth if it embraces all living creatures and does not limit itself to mankind." --albert schweitzer, philosopher, physician, musician, nobel laureate ( - ) overview this introductory chapter will introduce the reader to the fundamental ideas and concepts surrounding the research study. i will outline and explain the rationale, significance and purpose of the study. finally i will introduce the reader to the research question and the study’s design. background of the study much evidence, empirical and lived, attests to the fact that human beings need to be closely related to others in order to survive and thrive (bartels & ziki, ; reis & rusbult, ). this need for close interpersonal relationship begins at a biological level at conception, continues in the womb and manifests in myriad ways from infancy through to old age. human beings seem to have innate needs to both be nurtured and to nurture others. relationship science is now a burgeoning field in psychology and seeks to gain an understanding of interpersonal relationships and their influences on human development, behaviour, emotion, cognition and coping (reis & rusbult, ). this research focuses on a specific form of relationship, namely that between human beings and their companion animals /pets. the scholars in animal welfare, animal-human research and veterinary medicine currently employ the term companion animal, rather than pet, to reflect the mutual bond between human and animal (walsh, ) and as such, this term will be used interchangeably with pet throughout the dissertation. rationale human-animal bond while human beings and non-human animals (henceforth referred to as animals) are known to have been living and working together since the origin of our species (coren, ; knight & herzog, ), it is only in the past years that a body of research has emerged which focuses on the human-animal bond (hab) (hines, ). a new field of science called anthrozoology is burgeoning. anthrozoology focuses specifically on the human-animal relationship and bridges the natural and social sciences (podberscek, paul & serpell, ). it is generally accepted by most cultures that the companionship of an animal has health-enhancing effects including cardiovascular benefits and decreased levels of stress and loneliness (risley-curtiss, holley, & wolf, ). however, the relationship between humans and the animals with which they co- exist is still poorly understood (beck & katcher, ; wells, ). mullin ( ) explains: “increasingly, animals serve all at once as commodities, family members, food, and the embodiment of nature; it is therefore no wonder that they present a complicated set of relationships for human beings.” current attachment theory research demonstrates that the bonding behaviours once thought to be the sole propriety of infants and mothers are replicated in both adult love relationships (hazan & shaver, ) and human-companion animal relationships (kurdek, ). considerable research indicates that companion animals can moderate the effects of stressful life events such as divorce and bereavement, increase levels of social support and reduce levels of depression, anxiety and loneliness (brodie & biley, ; walsh, ; wells, ). given the high levels of stress, anxiety and depression in contemporary society combined with the growing isolation due to the diminishment of family in urban centres, companion animals are beginning to be regarded as potential sources of social support (antonacopolous & pychyl, ). yet we have not investigated the role of human / companion animal relationships as potentially significant and powerful bonds during illness (beck & katcher, ; risley-curtiss, holley & wolf, ). to examine the impact of companion animals on people facing adversity, this research focuses on the relationships that people dealing with cancer have with their pets. it is not difficult to see the links between the great humanist carl rogers’ core conditions for psychotherapy and the common perceptions of people regarding their pets. rogers’ necessary and sufficient conditions for therapeutic change include genuineness, empathy and unconditional positive regard (rogers, ). these elements are regularly cited as the reasons why many people feel so attached and devoted to their companion animals, and in particular to dogs (bustad, ; wells, ). intuitively, the positive effects of the hab are assumed to result from some of these factors, in particular the experience of unconditional love, affection and companionship, increased time spent outdoors and walking (brodie & biley, ; walsh, ). yet surprisingly the bulk of this research comes from the veterinary and anthrozoology fields and not from the discipline of psychology. there exists almost no clinically driven research from any branch of psychology regarding the hab outside of linking animal cruelty to psychopathology (raupp, ). thus the current socio-historical context of the hab is one in which there is a growing appreciation of human-animal relationships with limited empirical support from the field of psychology and hesitant appreciation of the importance of human- animal relationships in the society at large (risley-curtiss et al., ; walsh, ). i hope that this study will be one of many explorations of the hab by counselling psychology, psychosocial oncology scholars and clinicians in the near future. connecting the hab to cancer care for most people, the diagnosis, treatment and experience of cancer presents as frightening and distressing (holland, ). many patients are faced with an overwhelming array of physical, psychological, emotional and social challenges due to the multitude of unnerving possibilities such as disfigurement, pain, functional changes, and death (preyde & synnott, ). the psychosocial oncology literature strongly supports the link between social / emotional support and better coping responses to cancer and its related challenges (carlson & bultz, ; helgeson & cohen, ). most health and social sciences recognize the importance of relationships for human health and wellbeing and agree that good social support can serve as a buffer against the adverse affects of stress (helgeson, ; lent, ). the advance of successful medical treatment for many of the over types of cancers has resulted in a dramatic increase in both the life span and quality of life of people with the illness. at the same time, the incidence of cancer continues to grow, in part, due to early detection. approximately % of women and % of men in canada will develop cancer during their lifetime (canadian cancer society, ). while it is estimated that , new cases of cancer will occur in canada in , there also exists a five-year survival rate of over % per cent, the third highest in the world (canadian cancer society, ). in , there were just fewer than , canadians who had been diagnosed with cancer years prior. thus, there is a significant and growing population of canadians living with cancer who have distinct psychosocial needs (nitkin, parkinson, & schultz, ). the notion of cancer survivorship has emerged as a central phenomenon in oncology and is broadly defined as the time frame from diagnosis of cancer through the balance of life (bell & ristovski-slijepcevic, ). the new journal of cancer survivorship and numerous reports on survivorship from several countries including the united kingdom, australia, finland, and canada evidence the growing interest in this field. one can find a bevy of studies looking at survivors and their reintegration into the “new normal” (hill-schnipper, ). whether one self-identifies as cancer “patient”, “cancer ‘survivor”, “cancer victim” or “person with cancer” (park, zlateva, & blank, ) any such label generally comes with considerable psychosocial and existential distress (halldorsdottir & hamrin, ; preyde & synnott, ). while cancer is a disease, it is also a life experience that can profoundly affect and challenge the patient and his/her community (halldorsdottir & hamrin, ). for this reason, i employ the term “cancer experience” throughout the study. over the past twenty years, psychosocial oncology programming, services and research have greatly expanded in recognition of these hardships (owen, klapow, hicken, & tucker, ). psychosocial services include supportive and therapeutic counselling on individual, marital, family and group levels. the types of counselling include: vocational and financial, grief and bereavement, mindfulness and relaxation, cognitive-behavioural, psycho-educational, family communication, and crisis counselling to name a few. throughout these areas, the notion of relationship and social support consistently stand out as essential components of the coping and adjustment process (helgeson & cohen, ; lent, ). often the cancer patient experiences a sense of intense aloneness in their illness experience (holland, ) and companion animals may serve to lessen this suffering. the hab has been virtually ignored as a potential factor in this process. significance of the study this research has important implications for both the psychology and the psychosocial oncology bodies of literature. the study can open up a greater appreciation for the existing relationships that people facing illness may have with their companion animals. these relationships may be serving unmet needs and/or causing additional distress. in canada, over half the population has one or more household pets (leger, ; perrin, ) and in the united states, over % of households have at least one pet (american pet products association, / ). canadians have been substantially spending more on their pets for the past fifteen years (statistics canada, ). north america is not alone in this respect. growing numbers of pet-owners in many other countries demonstrate the value that human beings have for their relationships with animals: australia reports % are pet owners (australian national people and pets survey, ); england reports % are pet owners (pet food manufacturer’s association, ); china has had a consistently growing population of pet owners since that now stands at % (euromonitor, ). thus worldwide, the likelihood that a person dealing with cancer has a pet is high. because the presence of a companion animal has been shown to have significant impacts on human beings (risley-curtiss, ; walsh, ) it is important that these relationships be incorporated into the clinical realm of psychosocial cancer care. these relationships may offer a potentially untapped resource to augment psychosocial care. in addition, there are many people for whom the primary source of connection is their pet (risley- curtiss, ). it may be that these individuals are unable to benefit from these relationships when they are sick in part because professional health care providers pay little attention to them. in such cases, ailing individuals may require assistance and resources when challenges in caring for and/or being separated from companion animals arise, just as would be done for any patient’s child or family member. through a careful exploration of the companion animal factors that help and hinder a sense of well being for people with cancer, i have aimed to shed light on the ways in which people experiencing adversity perceive support and/or distress associated with their pets. serious illnesses such as cancer tend to initiate changes in help-seeking behavior. people tend to require multiple sources of support and may neither know how nor feel able to get their needs met (helgeson & cohen, ). my hope is that this study has identified some of the unknown support elements of companion animals specific to individuals facing serious illness. a deepened understanding of these relationships responds to calls from psychosocial oncology and hab research (beck & katcher, ; helgeson & cohen, ). purpose of the study while the research on the benefits and impact of companion animals and the hab are convincing, there remains little empirical and theoretical conception of these benefits, nor on the meanings that individuals and families make of their bonds with companion animals. positive social supports, interactions and interpersonal relations are known to have moderating effects on stress and coping, while contributing to a person’s health and sense of wellbeing (lent, ). pets are regularly experienced as non-judgmental, faithful, loving, reliable companions, ceaselessly excited to reunite with their human companions. such positive relationship characteristics would likely contribute to an individual’s emotional, social and physical wellbeing. however to date, much research approaches the conceptualization of the hab as either a substitute for, or mode to increase human social interaction rather than a valid relationship in and of itself (beck & katcher, ). in addition, the bulk of the research comes from a positivist paradigm. this study therefore explores from a qualitative point of view, the in depth experience of individuals who have a pet while also living with cancer. i have focused on an examination of the helpful and unhelpful aspects of having a pet during the cancer experience. in the area of psychosocial oncology there is virtually no research examining the role of pets in the experience of cancer patients and survivors and as such the study fills a gap in that body of literature. the fields of counselling and clinical psychology have also paid little attention to the human / companion animal relationship. thus this research also brings some light to this undervalued relationship and challenges an overarching anthropocentrism in psychology. as such this study explores the role of pet relationships in the lives of persons with cancer as well as the related events, feelings and interactions that significantly contribute to, or detract from an experience of wellbeing. this research is an initial fore into the hab for both the counselling psychology and psychosocial oncology scholarly literature. this research seeks to answer the following question: how does having a pet enhance and/or detract from a person’s sense of wellbeing during their cancer experience? study design method because this is a new field of study and involves deeply subjective and personal experiences, i conducted a qualitative study, best suited for exploratory research involving human experience (mcleod, ). the enhanced critical incident technique (ecit) was selected because it describes phenomena through a careful identification of factors that help promote or detract from the experience of a particular situation. in addition the method has been adapted for counselling psychology research (butterfield et al., ), which is the field of my education and work. i also chose ecit because it offers a structured yet flexible method for gathering, generating and organizing information from a rich source without imposing fixed definitions of concepts such as support, psychological or physical health, coping, adjustment, attachment, wellbeing and love. the ecit design allowed me to leave the arena open for participants to explore whatever it is that their pets mean to them and/or did for them that helped or hindered their experience of dealing with their cancer. ecit offers a practical approach to qualitative research, lending itself to clinical applications (butterfield et al., ) and one of my goals for this research is to contribute to the clinical forum. another goal of the study is to contribute to the nascent albeit growing body of knowledge regarding the human-animal bond. thus, an enhanced ecit method satisfied the multiple purposes that are suited to a clinically oriented research study of a new area of inquiry. the study was conducted with an interpretive approach to data collection and analysis. the critical incident technique (cit) can be used within a post-positivist or post-modern research paradigm (butterfield et al., ). interpretivism proposes that there are multiple and equally valid realities of phenomena, and that these realities constantly influence the research process (haverkamp & young, ). the distinguishing features of ecit employed from an interpretivist viewpoint allowed me to explore the factors and experiences about having a pet that feel significant and meaningful to participants with cancer, while acknowledging that the beliefs and experiences of both the participants and the researcher are unique and dynamic. to accurately contextualize participants’ experiences with their companion animal, i begin with a brief personal account of each participant’s pet experiences. this is followed by an investigation of the meanings that people with cancer make of their relationships with their pets as well as their perspectives on what wellbeing means during cancer. as a result, the subsequent helping and hindering incidents identified by participants were grounded in their own meaning systems. since so little is known about people’s relationships with their companion animals during times of distress, i chose the ecit approach because the categories that arose in regards to having a pet while having a cancer originated from individuals who have experienced the phenomenon. i hope that the clinically relevant themes gleaned from this study will honour the uniqueness and dynamic quality of the participants’ experiences. summary of chapter this first chapter has introduced the reader to the purpose and goals of the study by presenting basic information about the human animal bond, the incidence and challenges of persons facing cancer, and the ways in which these two areas meet. these topics along with their actual and potential connections will be further explored in the next chapter that reviews the related bodies of literature. chapter literature review overview the purpose of this chapter is to present and critique the major research and literature on the hab and constructs vital to psychology and to cancer care. a brief history of human- animal relations is followed by definitions of the current constructs and areas that are being explored in the field. the chapter will then provide an in depth review of the existing research on the human / companion animal relationship and note psychosocial and counselling psychology applications. finally, the field of psychosocial oncology is reviewed with particular attention to relational needs. historical perspective of human-animal studies “the greatness of a nation and its moral progress can be judged by the way its animals are treated.” mahatma gandhi dogs were likely the first domesticated animals as the remains of dogs and humans buried together have been found from over , years ago (crockford, ). dogs provided assistance with hunting, protection, herding, and companionship for peoples from every geographic region where they have lived, and the canine has had a significant presence in the spiritualism and mythology of most ancient cultures (coren, ; crockford, ). for thousands of years, dogs have been genetically modified for human needs and comprise one of the most complex gene pools of any species (coren, ). evidence from archaeological sites indicate that early human beings benefitted from the companionship of dogs as much as they did from their working skills (coren, ). humans began to domesticate animals such as cattle, goats, horse and sheep between , and , b.c. and human relationships with cats are likely over , years old (serpell, ). the earliest human art depicts animals more than it does humans and the presence of animals in religion and spiritualism is present and often central across all cultures (walsh, ). unfortunately, domestic animal abuse has been both common and brutal and animal protection organizations and policies only began to emerge in the nineteenth century (raupp, ; walsh, ). until the early ’s studies in the animal-human connection were primarily veterinary in nature (coren, ). the field of nursing was one of the first to begin to research and promote the importance of the human-animal relationship and social work and public health followed suit (hines, ). the term hab was coined in the early ’s by leo bustad, the founder of the delta society, who spearheaded many successful programs that continue on today, including shelter animals visiting nursing homes, animal care-taking for female prisoners and the training of dogs for people with special needs (bustad, ; hines, ). around this time, substantial research was beginning to show that animal companionship helped to reduce blood pressure, stimulate endorphin release and lower stress and anxiety levels in people (hines, ; walsh, ). the development of the humane society in the ’s spearheaded research in an area called “pet therapy” where animals began to be used purposefully to assist individuals in nursing homes, children with disabilities, and those with hearing and/or visual impairments. in the early ’s konrad lorenz developed the field of ethology with his landmark research on the imprinting behaviours of geese. since that time, human-animal studies have grown considerably. the majority of work in the field is still principally conducted in anthrozoology and veterinary medicine with increasing contributions by the disciplines of social work, cardiology, nursing, anthropology, gerontology, and psychiatry. currently, multiple surveys, reports and studies indicate that people consider their pets to be highly significant elements of their lives (wells, ). eighty-five percent of pet owners consider their pet to be a family member (cohen, ) and over half of spouses report that they feel closer to their pet than they do to their partner (beck & madresh, ). more children in the united states live with a pet than they do with both parents and more homes have a pet than have children (walsh, ). over half of pet owners consider themselves to be a parent to their pets and state that if stranded on a desert island, they would choose their family pet as their primary companion (american pet products association, / ). animals provide companionship for millions of elderly widows and widowers as well as young single people and couples. the great majority of cat and dog owners report that pets contribute to their health and provide sources of comfort, relaxation and stress reduction (allen, ; sable, , ). risley-curtiss, holley and wolf ( ) report that there are few statistical differences found in relationships with companion animals based on the pet owner’s ethnicity. in addition, pet bereavement is becoming a recognized and significant experience for children and families that may have long lasting consequences if not addressed responsibly (barton-ross & baron- sorensen, ; kaufman & kaufman, ). psychology research relating to the hab unfortunately the field of psychology has been very slow to acknowledge and research the area of human-animal relationships, something that has mystified many scholars in the field (hines, ; knight & herzog, ; kurdek, ; walsh, ). until very recently, attention paid to human – animal relations by the field of psychology has primarily involved cruelty to animals, fetishes and domestic violence (raupp, ). research has demonstrated that individuals who abuse their pets are more likely to also be abusive to family members (faver & strand, ). numerous studies show that many victims of abuse delay leaving because they don’t want to abandon their animals (flynn, ). abusers often use the threat of harm to pets as a way of coercing and controlling spouses and children (becker & french, ). repeatedly, the literature indicates that violence toward animals witnessed and perpetrated in childhood is linked to aggressive and violent interpersonal behaviour, and may be a sign of child abuse (flynn, ). these links are jarring and disturbing on a number of levels, and many researchers wonder why so little attention has been paid to the issues (felthous & kellert, ; flynn, ). even within this domain, psychology has kept its distance from human-animal studies (raupp, ). unfortunately, the same neglect exists toward the positive aspects of human-animal relations (hines, ; melson, ). in my literature search, i utilized psycinfo and academic search complete to investigate research on people and their pets and companion animals. i began to notice that the great majority of this research was coming from fields outside of my own. i then focused in on the journal of counselling psychology, the counseling psychologist, canadian psychology, canadian journal of counselling, and the american journal of psychology. within these journals only a total of titles or abstracts with the word “pet” or “dog” or “companion animal” were found. unfortunately, none of these studies involved the human-animal bond. in very recent years, however, psychological research on the hab is slowly beginning to sprout, particularly in health promotion and wellness, attachment studies, social psychology, the link between violence against animals and violence against humans, animal-assisted therapy and pet bereavement. the counseling psychology section of the american psychological association, division , recently added a separate area devoted to research and practice on the topic, entitled animal- human interaction. it is within this context that i seek to research the human-animal bond. animal-assisted therapy animal-assisted therapy (aat) represents a clinical arena that involves the use of animals to solve and ameliorate human problems. areas within aat include: (a) service animals for individuals with sensory impairments, physical disabilities, health and mental health conditions; (b) equine therapy for trauma survivors and children with developmental delays and physical disabilities; (c) trained visiting dogs for individuals in long term care facilities; (d) animals as sentinels for humans at risk for seizures; (e) animals for use with cancer detection; and (f) service animals for people with anxiety disorders (fine, ). growing research is now being conducted regarding aat in health and mental health care (fine, ). aat differs from companion animals in that the animals in aat are trained for specific application to a particular human need and are essentially working. while deep connections develop between individuals and their service animals, my research has been restricted to the hab between human beings and their companion animals. research on the health and psychosocial effects of companion animals health effects the literature demonstrates numerous health benefits for pet owners. in general, people with pets consistently appear to be healthier than their non pet-owner counterparts (cutt, giles corti, knuiman, & burke, ). there is strong evidence that links companion animals to significant cardiovascular benefits in both adults and children, including lower blood pressure and cholesterol levels (allen, ; cutt et al., ). this research has been conducted in a variety of situations including children reading aloud, adults completing a mental arithmetic task and individuals experiencing an emotional or physical stressor (allen, ). results have shown that the presence of a bonded animal can be more effective in moderating physiological stress levels than that of a friend or marital partner (walsh, ). there is also good evidence that supports significant health-promoting effects on oxytocin levels (a calming neuropeptide), blood pressure and heart rate for both the individual and animal during soothing contact, petting and holding of pets (miller, kennedy, devoe, hickey, nelson & kogan, ; walsh, ). similar effects have been found to hold true for individuals exposed to a stressor while watching fish in an aquarium (brodie & biley, ; cole & gawlinski, ), a finding that has particular significance for elderly people and individuals in acute and long term care settings. in an oft-referenced study, friedmann and thomas ( ) found that pet owners with coronary artery disease had significantly higher survival rates one year after a heart attack than those without companion animals. in their work, pet ownership and high social support were associated with better survival regardless of the severity of the patient’s heart attack or their demographic characteristics (allen, ). not surprisingly, this finding was associated with increased physical activity on the part of dog owners, a factor that explains some of the health, and social and psychological benefits of pet ownership in general (cutt et al., ). this study has been repeated many times, always with similar results. perhaps for similar reasons several studies also indicate that senior citizens with pets pay fewer visits to medical professionals and in general, appear to cope better with stressful life events (allen, ). not all the research in this area, however, shows the same results. a australian study of adults found no difference in the medical system usage, health or psychological wellness between pet owners and non-pet owners (cutt et al., ). additionally, few studies have researched the long-term effects of pet ownership on health. finally, the conclusion that companion animals buffer stress cannot necessarily be inferred. it may in fact be true that healthier people tend to own pets and that socio-economic and cultural factors are at play more than pet ownership. in general, sample sizes are relatively small, and few reports assess the negative aspects of pet ownership (cutt et al., ). research that examines the influence of these factors with different methodologies and more meaning related and clinical themes are needed (beck & katcher, ; walsh, ). psychosocial effects a myriad of psychosocial benefits associated with pet ownership can be found in the literature. research suggests that people experience their relationships with their pets as emotionally supportive and highly significant bonds in their lives (walsh, ; wells, ). this significance is seen to be particularly apparent for single, divorced or widowed people, and for senior citizens and women who live alone; however, the connection is reported across gender; circumstance, and culture (risley-curtiss et al., ). as addressed in the previous section, we have seen that the presence of a bonded animal elicits the relaxation response and oxytocin levels and therefore is beneficial to individuals under acute or chronic stress or anxiety. the presence of pets or animals has been shown to increase social interaction between and amongst people. in their research, mcnicholas and collis ( ) found that when a person was out with a dog, there was a marked increase in the number of social approaches to that individual, regardless of the appearance of the dog or the person. this occurred even when the dogs were trained to ignore a passerby. in their study of observed encounters between people in a park setting, of the interactions occurred when the experimenter was accompanied by a dog (mcnicholas & collis, ). far fewer interactions were observed when the experimenter was on their own. while the majority of the interactions were brief, they were primarily from strangers, and on subsequent days, a number of individuals remembered the experimenter and inquired as to the whereabouts of the dog. similar findings were reported by wells ( ) who observed pedestrians and found that people approached a female experimenter with a dog significantly more than when she was alone or with a teddy bear or plant. wells did find, however, that the effect was not generic and that different types of dogs, such as a labrador retriever, elicited more social responses than a rottweiler (wells, ). other research demonstrates similar increases in social approaches when a person is sitting with an animal other than a dog, such as a turtle or rabbit (hunt, hart & gomulkiewicz, ). finally, guegen and ciccotti ( ) conducted four experiments demonstrating that strangers are more likely to assist persons who are accompanied by a dog than they are individuals on their own. the researchers found that confederates who were asked to approach strangers for bus money were assisted significantly more often when accompanied by a dog. no differences were found related to the confederate’s gender. this research suggests that the presence of a dog enhances the social interactions of an individual and thus has meaningful implications for people who struggle with loneliness, shyness and/or social anxiety, or are simply in need of more connection or contact. in geriatric research, lower levels of loneliness and depression have been found in elderly people living alone who have a companion animal (brodie & biley ). this effect was not seen however, when senior citizens have a partner living with them. while it is rare that pets are permitted to live with their owners in nursing homes, the presence of a resident animal (pets that live in the facility) and animal assisted therapy have been shown to increase morale, reduce loneliness and agitation, provide reassurance, and evoke a feeling of being needed for residents and caregivers alike (baun & mccabe, ; filan & llewellyn-jones, ). similarly, studies have found that homeless individuals will often feed their pets before they feed themselves (kidd & kidd, ; taylor, williams & gray, ), and that women who are in violent relationships rely on their pets for emotional support and delay leaving the abusive home for fear the family pet will be harmed or killed (flynn, ). so strong is the bond between human and companion animal, that we see the same sort of altruism normally associated with particularly powerful human/human connections. the impact of pet companionship for individuals suffering from illness is also an important and growing area of research. the results are mixed. in a small study of caregivers of married couples facing dementia, connell, janevic, solway and mclaughlin ( ) found that the companion animal provided reassurance and a sense of closeness for caregivers as well as reality orientation and calming effects for the individual with dementia. this occurred primarily in the earlier stages of the disease however. some caregivers reported that as their spouse’s disease progressed, the pet became an additional burden to them (connell et al; ). siegel, angul, detels, wesch and mullen ( ) conducted a large and methodologically strong study of , persons with aids across four major cities in the u.s.a. the results found lower levels of depression in individuals who own a pet and had low social support. this finding was not generalized to all pet owners. pet owners who had good social support were as likely to be as depressed as those without companion animals, corroborating the aforementioned research on companion animals and senior citizens (siegel et al., ). tower and nokota ( ) conducted an internet survey about pet ownership with , respondents and found comparable results. their analysis revealed that single women benefitted the most from pet companionship, decreasing their levels of depression significantly from single women without companion animals (tower & nokota ). one study relating the hab to cancer was found. johnson, meadows, haubner, and sevedge’s ( ) exploration of complementary alternative interventions with cancer patients showed that dog visits were viewed as part of therapy and garnered a highly positive response from patients. this study, however, studied animal-assisted therapy and unfortunately, nothing has been found to date on the influence of pet ownership and the cancer experience. numerous other areas involving companion animals and people are being explored in the literature. improved psychological wellbeing of prisoners who have an animal in their care is a consistent finding in research (bustad, ). companion animals are recently being incorporated as part of family systems research, challenging the general anthropocentrism found in researching family and other social relationships (walsh, ). pet bereavement is also an area that is garnering more attention, with some research demonstrating that the childhood loss of a pet is a significant life event not to be trivialized (kaufman & kaufman, ). theoretical and narrative accounts suggest the possibility that pets may provide a close and safe connection for adults who are survivors of childhood emotional and/or physical abuse. several compelling books, films and publications on the healing power of pets in this realm exist however, they are primarily anecdotal in nature. it is my hope that this research will contribute to the scholarly literature on the hab from a counselling psychology perspective. problems with pets like most relationships, the world of human-animal companionship has its share of challenges. while scores of people consider their pet to be a family member, there are also those for whom pets are associated with decreased physical and mental health (beck & katcher, ). in addition, ten to fifteen percent of the canadian population is allergic to some sort of animal (national institute of allergy and infectious diseases, national institute of health (http://www.niaid.nih.gov/publications). even so, a third of people with allergies keep a pet in their home. in , the canadian hospital injury reporting and prevention program found almost incidents of dog bites reported that year in canada (public health agency of canada, ). more recent statistics from the u.s. report that dogs bite . million people annually (centers for disease control and prevention, ) and that over , of these incidents require medical care. unfortunately, the highest incidence of dog bites in both countries occurs in children aged - years. thus those we call “man’s best friend” are not always friendly to us. several studies suggest that pets elicit no effect or decreased morale for certain populations. the association between pet ownership and health seems weakest among the elderly (wells, ). elderly people who owned dogs or cats have been found to have significantly higher instances of falls. research involving depression and pet ownership also shows mixed results. there is no conclusive evidence to suggest that having a companion animal is necessarily associated with lower levels of depression. results are specific to certain groups under particular circumstances (tower & nokota, ). human animal studies are still very rare however, and as a result, little is known about the relationships between pet ownership and mental or physical health (beck & katcher, ; wells, ). the cancer experience cancer is by no means a homogenous physiological or psychological experience. there are over different types of cancer that differ in severity, prognosis, treatment and fatality depending on numerous factors including site, stage, grade as well as many others (stanton, ). despite the proliferation of advances in cancer treatment, the gloomy stereotypes associated with cancer continue to pervade the psyches of most patients diagnosed with a malignancy (holland, ). these fearful stereotypes also pervade the general community, with the result that cancer patients often experience a sense of perceived or actual rejection in their environments (halldorsdottir & hamrin, ). the term cancer itself is used frequently as a metaphor for anything that grows out of control and ultimately destroys its host. the continued myths around contagion, death, loss, and the anxiety of communicating with seriously ill persons can greatly strain relationships, even with professionals (stahly, ). the consequence for the patient is often a sense of isolation and displacement. a further stressor in the illness results from the ensuing treatment. treatment generally involves a combination of surgery, chemotherapy and radiation therapy, each of which produce side effects that may be more unpleasant than the symptoms of the cancer itself. pain, disfigurement, loss of hair and appetite, fatigue, changes in sexual functioning, employability or ability to work and cognitive impairment are common side effects of typical treatments and pathologies (holland, ). even well established protocols of treatment will have widely varying degrees of side effects and effectiveness on the same disease in different patients; consequently enormous uncertainty is commonly experienced regarding treatment outcome and prognosis. when cancer is curable, there is always a chance of recurrence; as a result most survivors feel that their lives have been inexorably altered (nitkin, ). psychosocial oncology the need for mental health counselling in cancer care is fairly self-evident and supported by both patient and professional (bottomley, ; holland, ). people with cancer face enormous challenges in adapting to a disease that usually causes significant psychosocial stressors across the spectrum of physical, emotional, and existential experience. common problems include anxiety and depression (massie, ), meaning-seeking and explanations for the disease, isolation and helplessness, lack of support (helgeson & cohen, ), confronting death, and facing physical limitations (fawzy, fawzy, arndt, & pasnau, ). unfortunately, the continued stigma surrounding both mental health issues and death may further challenge the person with cancer, inhibiting their adjustment or use of psychosocial services (holland, ). psychosocial oncology literature is often site specific. the majority of psychosocial oncology research has been done with the breast cancer population. high rates of depression and anxiety are found in women with breast cancer (ben-zur, gilbar, & lev, ; hack & degner, ). distress is regularly associated with body image and identity changes; scarring; reconstruction, sexuality and fertility concerns (ben-zur et al., ). other sites have been researched as well. individuals with lung cancer, head and neck cancers, blood cancers, brain cancer, ovarian cancer also experience distinct psychological challenges. in general, diagnoses of clinical depression and anxiety are significantly higher in the cancer population than the general population (preyde & synnott, ). research in psychosocial oncology is a broad field. i am situating my study in the centre section of j. holland’s ( ) model for psychosocial and quality of life research in oncology, as seen below. pet relationships may be part of the “social supports” and function as a mediating variable for persons with cancer that is as of yet, practically unrecognized in the literature. figure . research model for psychosocial and quality of life research in oncology. j. holland, ( ) coping and psychosocial adjustment in health and illness literature, coping is a broadly researched construct. coping theories, strategies, models and linkages have been explored regarding diagnosis, treatment, prognosis, relationships, employment, sexuality, spirituality, personality factors, resiliency, post-traumatic growth and many more. coping style research is ripe with theories regarding which styles are more vulnerable to which diseases, and how to bolster coping for prevention and treatment. the literature is vast. in cancer care, the term ‘adjustment’ is commonly used to indicate the ability of a person with cancer to adapt to the multiple physical, social, emotional and functional aspects of the disease (brennan, ). in particular, psychosocial adjustment to the illness is becoming increasingly recognized as a significant factor in quality of life, adherence to treatment, and survival (carlson & bultz, ; hack & degner, ). lazarus and folkman ( ) characterize coping strategies as behavioural and cognitive attempts to manage or deal with stressful encounters. they distinguish between problem focused and emotionally focused coping. the latter aims to decrease the negative emotional experience related to a perceived problem. this may include prayer, crying, talking/ telling the story, and other forms of expression. psychosocial oncology research shows inconsistent conclusions regarding one type of coping being more effective than the other for people with cancer. cognitive, emotional and behavioural responses all account for the quality of adjustment to the illness (brennan, ). dunkel-schetter, feinstein, taylor and falke ( ) identified patterns of coping in their sample of cancer patients using folkman and lazarus’ ways of coping inventory ( ) adapted for cancer. the following five patterns emerged: a) seeking or using social support, b) focusing on the positive, c) distancing, d) cognitive escape-avoidance, and e) behavioural escape-avoidance. the authors found that these coping patterns were not dependent on gender, age or disease factors (type of cancer, time since diagnosis, pain, fear of future). rather, individual appraisals of stress due to cancer and social networks were found to be linked to most of the patterns. most respondents used multiple coping strategies and behaviours. not surprisingly, emotional distress was associated more with distancing, and escape-avoidance coping. this finding is consistent with much of the research on psychosocial adjustment to cancer suggesting that social withdrawal, emotional suppression, and avoidance-based coping responses tend to result in poor adjustment (hack & degner, ). thus coping that includes social support is significantly associated with lower levels of emotional distress (lent, ). brennan ( ) has integrated coping responses, social support and cognitive appraisal processes in his development of the social-cognitive transition model of adjustment to cancer. according to his model, psychosocial adjustment to cancer is an ongoing process of learning and adaptation through the myriad changes and challenges over time through diagnosis, treatment, and post-treatment phases (hack & degner, ). brennan qualifies the term ‘adjustment’ as misleading as it suggests a movement from one stage to another, and does not accurately reflect the continual change processes occurring within and around the individual with cancer. multiple factors such as mourning, posttraumatic stress, and diverse and changing physical illness manifestations are integrated to create brennan’s model, focusing on both positive and negative adjustments within the social context of the individual (brennan, ). he focuses on the human being’s ability to self-regulate, learn and adjust core assumptions over time and with support and encouragement of personal efficacy. this broader conceptualization of psychosocial adjustment accounts for the “huge diversity of experiences that people with cancer report” (p. ) and the challenges in making sense of a condition that can potentially destabilize every element of a person’s existence. here again, we find that empathic social support is considered to be a significant factor in the adjustment process. we need to know if in fact pets are providing such support for some people with cancer. as such, this research focuses on the relational, emotional and social resources that individuals with cancer may derive from their companion animals to help cope and adjust to their condition. social support there are multiple taxonomies associated with the broad topic of social support. most include three basic functions: emotional support, instrumental (practical) support and informational support (helgeson, ). the focus of this research is the emotional domain. emotional support refers to the provision and reception of companionship, reassurance, listening, care, and sympathy, value and love to and from others. good social support is considered to be a key factor in wellbeing outcomes in general (lent, ). helgeson ( ) also emphasizes the difference between perceived support and received support. perceived support refers to the extent that people believe there is support available to them while received support can only be truly measured by observing a support exchange. interestingly, perceived support is more strongly related to quality of life than received support (helgeson, ). this bears noting as in general, pet owners tend to express that their companion animals are among their closest friends and provide them with a sense of unconditional love and security (fine, ; walsh, ). i seek to explore the perceptions of people with cancer regarding the role of their pets as potential providers of emotional support. because cancer is an experience where people clearly benefit from good support, it is of value to know whether or not companion animals play a part in this dynamic. finally, it is well documented that human beings not only need to be the recipients of support; we also have a need to nurture and provide care to others (berscheid, ; yalom, ). in particular for individuals facing illness, there is often the possibility that one over- identifies with, or becomes exclusively associated with, the role of patient and/or receiver of care. this sense of imbalance, in particular for many women, may be moderated by having a companion animal that continues to seek and require care. as demonstrated in previous sections of the paper, social/emotional support is repeatedly identified as a salient feature of healthy adjustment to cancer (helgeson & cohen, ; lent, ). waxler-morrison et al. review two of their own studies and show how their qualitative research produced surprising findings that merited further study. in the first phase of a prognostic study of breast cancer patients, a large epidemiological survey was followed by a small qualitative study. data from the initial survey involving the women’s social support system and network was analyzed after a four year follow up period. from a sample of women, it appeared that women with high survival rates shared certain characteristics. they had more contact with supportive friends; larger social networks; were employed; and were primarily single, divorced, or widowed. due to these unexpected discoveries, a set of open-ended ethnographic interviews with some of the breast cancer survivors was developed to further inform the findings. informal interviews with the participants focused on the role of work, family, friends, and social support in their cancer experience. a qualitative analysis of the responses produced new hypotheses, which are relevant to counselling. survivors tended to be women who fostered their ability to continue to give support to others in community, family, or other social settings. thus it appears important that people with serious illness maintain the opportunity to display and act upon their concern for others. this inherent need to nurture is a healthy, normal aspect of social interaction (yalom, ) and is often taken away when an individual is seriously ill. relational-cultural theory strongly supports this mutuality as an essential component of growth-fostering and authentic relationships (jordan, ). a pet may provide a unique opportunity for cancer patients to express and validate this important and often unmet need. wellbeing the concepts of quality of life, personal life satisfaction and various forms of wellbeing are heavily theorized and researched constructs in both psychology and health literature. multiple measures have been developed to assess the life satisfaction or quality of life of individuals in times of both calm and distress. however, wellbeing remains essentially a subjective experience (helliwell & wang, ; lent, ). lent explains that counselling psychology depathologizes these constructs, focusing on the resources and strengths people have, rather than their difficulties and maladaptive tendencies (lent, ). as such, his definition of wellbeing includes the notion of hygiology, the location and development of personal and social resources and adaptive behaviours, even in the midst of distressing life circumstances (lent, ). this term is reminiscent of antonovsky’s ( ) conception of salutogenesis. salutogenesis focuses on factors supporting health and wellbeing, challenging pathogenesis (origin and cause of disease) as the dominant paradigm for health and disease (eriksson & lindstrom, ). the construct was proposed by antonovsky in and incorporated into the ottawa charter ( ), the central document of the health promotion movement (strandmark, ). in an epidemiological study of menopausal women in israel, antonovsky observed that many women who survived concentration camps had a great capacity for health and wellbeing despite their traumatic past experiences. this observation highlights the human ability to thrive despite constant exposure to disease and stress. similarly, the growing movement of positive psychology focuses on an individual’s strengths, virtues and resilience as essential components of a life experience that is both fulfilling and meaningful (seligman & steen, ). these approaches provide grounding for the notion that a close relationship with a pet may serve to support the health and wellbeing of a person, despite the presence of physiological disease. lent identifies two types of wellbeing from the research, namely subjective wellbeing (swb) and psychological wellbeing (pwb). he explains that subjective (swb) consists of three interrelated but distinct components: life satisfaction, positive affect, and the absence of negative affect. pwb research rather, concentrates on theoretical qualities that are assumed to reflect healthy functioning, such as life purpose, good relationships and self-acceptance (lent, ). the literature is not consistent as to whether either of these wellbeing constructs remains stable over time. finally, trust is also strongly linked to subjective wellbeing. helliwell and wang ( ) explain that trust is “built on a base of shared positive experience, and is nurtured by continued connections” (p. ). intuitively, one can see the parallels here for many people and their companion animals. one of the hallmarks of people’s experiences with their pets is a sense of total trust in them, often beyond their closest family members (walsh, ). as can be seen, subjective wellbeing is a layered compilation of personally rooted experiences. what tends to be agreed upon is that social and relational resources play an important role in both pwb and swb. helgeson ( ), one of the leaders in social support research, stresses that people benefit from different types of social support in very different ways. he contends that research must consider the multifarious, individual aspects of social support including social environment, function, perceived and received support, positive and negative aspects, and reciprocal provision of support. as such, in my study i asked participants to define and expound upon their personal meanings of socio-emotional wellbeing during the cancer experience rather than focus on a particular theoretical model. non-verbal communication and touch studies indicate that both the individual and bonded animal experience relaxation and calm during soothing contact, petting and holding of pets as evidenced by decreased blood pressure and increased oxytocin levels (miller, kennedy, devoe, hickey, nelson & kogan, ; walsh, ). in the cancer experience, touch often becomes linked with invasive medical procedures such as blood tests, surgery, injections, radiotherapy and the associated pain. disfigurement and hormonal changes due to procedures and treatment, in particular in breast and reproductive cancers often result in major changes to sexual functioning (katz, ). research on therapeutic touch (tt) suggests that it is a beneficial complementary and alternative medicine (cam) treatment that is particularly effective in facilitating the relaxation response (nitkin, ; stephen, mackenzie, sample, & mcdonald, ). tt consists of a gentle laying of hands or energetic movement near or upon the recipient with intention to heal and comfort. the practice at times appears to be similar to the gentle petting of a companion animal. since we know that human beings need to both give and receive physical contact, it seems intuitive that the touch between a person and a bonded animal may provide a particularly satisfying and soothing experience for a person with cancer. in humanistic / existential psychotherapy, the healing of a broken or troubled existence occurs through presence: two human beings (client and therapist) meeting and connecting with authenticity, care and honesty (may & yalom, ). it may be that this type of presence is occurring on nonverbal levels between people and their pets. attachment theory some of the most influential work in the area of relationship science arose during the ’s and ’s with the seminal work on attachment theory developed by john bowlby ( ) and mary ainsworth ( ). attachment theory focused on the forging and breaking of bonds between infant and primary caregiver with the goal of understanding how children develop emotional attachments to their caregivers and experience distress when separated from them (feeney, noller & roberts, ). the theory laid the foundation for the formation of an explanatory framework for human emotion, behaviour and cognition involving close relationships. attachment theory has become one of the most researched and studied theories of interpersonal relations in the field of psychology (feeney & noller, ; fraley & shaver, ). bowlby ( ; ) identified four features of the attachment process, usually occurring between infant and mother, most of which can be intuitively applied to human – companion animal relationships. they are: • proximity maintenance: a need to maintain physical closeness and proximity to the attachment figure. • separation distress: an experience of distress upon separation from the attachment figure. • safe haven: pleasure and relief upon reunion. • secure base: an ability to explore the environment knowing one is protected by the attachment figure. mary ainsworth brought bowlby’s work to the united states and developed an assessment process for attachment entitled the “strange situation” ( ) which involved observations of children being temporarily removed from and returned to the presence of the primary caregiver (ainsworth, blehar, walters, & wall, ). her studies revealed three different attachment styles that an infant may display: (a) secure, (b) avoidant (insecure) and (c) ambivalent (insecure) (ainsworth, ). further research identified a fourth attachment style called disorganized (insecure), indicating a lack of coping strategies for separation. ainsworth continued her research on attachment beyond infancy ( ) and identified multiple affectional bonds across species and developmental stages in her later work. she posited that these bonds provide fundamental functions for human beings and other animals including protection, care giving, procreation, affection, child rearing, and solidarity. adult attachment while both bowlby and ainsworth viewed the attachment system as an essential component of the human experience across the life span, research and development in attachment theory remained focused on the infant-mother bond for over years (fraley, ). criticisms of attachment theory noted the paucity of attention paid to peer, family and social relationships as contributors to working models of attachment for both children and adults (field, ). in the late ’s, however, researchers began to look at attachment in adult life. they found that similar working models of attachment existed within many adult relationships. in , hazan and shaver presented their seminal work introducing the idea that some adult relationships functioned in very similar ways to the infant-caregiver bond. the researchers noted the following similar features in romantic relationships: (a) both feel safe when the other is nearby and responsive, (b) both engage in close and intimate physical contact, (c) both experience feelings of insecurity when the other cannot be accessed, (d) both share new experiences and discoveries with each other, (e) both display a mutual fascination and preoccupation with one another and play with the other’s face, and finally (f) both use baby talk as a form of communication (fraley, ). these parallels with bowlby’s original four features served as a foundation for the characterization of romantic love as an attachment system, not unlike the infant-caregiver system. the close relationships literature now shows that adults develop attachments to multiple figures throughout their lives (kurdek, ). currently, this characterization is being applied to the relationship between person and companionate animal and has fostered a body of research in this area, in particular between people and dogs (kurdek, ; ). attachment and companion animals until one has loved an animal, a part of one's soul remains unawakened. ~ anatole france there is a developing literature exploring attachment and canine companions that suggests that relationships between dogs and people operate in similar ways to primary caregiver and romantic love relationships (kurdek, ). this research area seeks to better understand the significance of pet companionship as well as give credence to the hab and associated issues such as pet bereavement. in one of the first studies of its kind, albert and bulcroft ( ) conducted telephone interviews with a random sample of pet owners and non-owners regarding their relationships to animals. the authors found that pet owners in general considered their companion animal to be a member of the family and that what appeared to be attachment to pets was highest among dog owners who were either single people (never-married, divorced or widowed); childless couples, newlyweds and empty-nesters (albert & bulcroft, ). women who had a dog or cat also reported significantly less loneliness than those without a pet. since that time, researchers have been looking more closely at pets and attachment within a scholarly context. because attachment is a term that is often loosely applied, only studies that based their research on conceptual models of attachment to pets were reviewed for this study. the following research in the area of pet attachment has been selected to provide multiple viewpoints on the topic. in an unique study exploring pet dogs as attachment figures, kurdek ( ) surveyed four different groups of pet-owners (n= ) to examine the extent to which pet dogs displayed the four features of an attachment figure and whether participants varied in their levels of closeness to people relative to their attachment to their companion animal. kurdek’s results showed that while mothers, fathers, siblings, friends and significant others exhibited higher levels of the features of safe haven, secure base and separation distress than dogs, the companion animals were consistently above the midpoint of the scale and not far off from their human counterparts (kurdek, ). in fact, dogs were rated equally to fathers and siblings on the proximity maintenance feature. not surprisingly the most salient feature of attachment to dogs was proximity maintenance, as people seem to greatly benefit from the physical closeness of their pet. kurdek found also, however, that secure base was the next strongest feature, one which the author explains, is a feature of attachment only, as opposed to proximity maintenance being a feature of both attachment and care giving (kurdek, ). this is a relevant finding and needs to be followed up with future research. the study also yielded the not-surprising conclusions that individuals with high levels of global attachment to dogs correlated with high levels of global attachment to persons, and that dogs that were more affectionate, intelligent and energetic were linked with higher levels of attachment from their owners than those with aloof or aggressive tendencies. serpell ( ) reported similar findings in his research but to a lesser extent. he found that pet owners’ ratings of their companion animal’s behaviour did not tend to disrupt attachment levels, except for slightly higher attachment levels reported for people with more intelligent dogs and noisier cats (serpell, ). serpell’s and kurdek’s findings suggest, as of now, that large attachment variations do not exist dependent upon animal behaviour. however, these studies have primarily been done with volunteer participants who likely respect and care for their companion animals regardless of the pet’s behaviour. beck and madresh ( ) also conducted research comparing people’s attachment levels to their pets with attachment levels to other people, in this case, romantic partners. they utilized adapted attachment measures scales for pets in a web-based survey of pet owners. traditional attachment theory would suggest that attachment styles would remain consistent among relationships. this consistency was only weakly supported, suggesting that human- companion animal relationships are based on different working models than romantic partnerships. they did find, however that adapted attachment scales produced meaningful results in terms of attachment styles with companion animals. there is now sufficient evidence to include companion animals (particularly dogs and cats) among significant attachment figures (sable, ). pet owners display attachment behaviours as described by bowlby and ainsworth. pet owners are physiologically and psychologically calmed by the presence of their companion animals, frequently touch and sit close to their pets, and display typical grief reactions to their absence, illness or death (kurdek, ). they are distressed when threatened with disruption of the bond or separation, and they regularly seek proximity to, and security from, their pets (kurdek, ; sable, ). the same may very well be true for the animals in relation to their human companions. in their research utilizing ainsworth’s strange situation procedure with people and dogs, palmer and custance ( ) found that the dogs in their study consistently displayed attachment-like behaviour to their human companions, concluding that the dog-human bond also conformed to the attachment system as defined by ainsworth. finally, one of the more controversial questions in attachment research challenges the degree to which attachment styles remain consistent or are subject to change over the lifespan (feeney & noller, ; fraley & shaver, ; fraley, ). within their model, hazan and shaver state that working models of attachment developed early in life are very resistant to change. some researchers consider this to be a weakness of the theory and claim that people’s working models actually do substantially adjust over time depending on the frequency and intensity of experiences in interpersonal relationships that confirm or disconfirm their expectations (feeney & noller, ). in her work on interpersonal relationships, berscheid ( ) reports that research indicates that people’s attachment patterns, or security orientations may reflect the current relationship they are in as much as their inner working attachment model. it would be worthwhile to explore whether individuals with companion animals shift or change their attachment styles over time, particularly if they are insecure or avoidant. it is intuitively reasonable that secure attachment relationships with companion animals may serve to rework unhealthy models of attachment, thereby providing hope and relief for isolated and traumatized individuals at the hands of other people, such as victims of child abuse, violence and rape. counselling psychology applications "there is no psychiatrist in the world like a puppy licking your face." ~ ben williams many important things in people’s lives depend on good adjustment and experiences in relationship. healthy relational bonds are necessary for human beings and they enhance life; while problems in connecting with others are often accompanied by challenges in learning, social relations, quality of life, mood and self-esteem. therefore, counselling psychologists must be well equipped with knowledge on the topic in order to assist clients in resolving relational issues. throughout the human experience, connection, isolation, and trust remain consistent areas of challenge and as such, will likely form the bulk of issues brought to the clinical arena of psychotherapy. counselling psychology often distinguishes itself from other mental health areas because of its distancing from pathology and focusing on individual’s strengths (lent, ). the human animal bond may indeed be a strength in the life of an individual, family or community, and as such should be considered in our work with clients. relational bonding is not a uniform phenomenon and therefore, romantic love, parental love and friendship may represent only part of a client’s relational experiences. while many individuals come to therapy with issues in their romantic and/or family of origin relationships, lessons from relationship science and the distinction between companionate and passionate love suggest that friendship and other types of close relationships are all important material to assess and explore in session (berscheid, ). for many clients, a friend, sibling, other significant person or pet may serve as a significant sense of identity, companionship, connection and fulfillment. grief reactions to the loss or illness of a pet are often minimized, resulting in disenfranchised grief. there are few socially sanctioned rituals for mourning the loss of a companion animal. thus an individual for whom their pet is a primary relationship, the death or loss of the animal is likely a very serious event (chur-hansen, ). for some individuals with histories of abuse, a relationship with a companion animal may be the most significant and/or safest connection in their life. for others, companion animals may provide a reason for living by providing someone or something to care for (chur-hansen, ). since the presence of an animal has been shown to increase positive social interaction (gueguen & ciccotti, ; wells, ) pets may have the potential to decrease feelings of isolation or loneliness and increase feelings of meaningfulness and quality of life for lonely, depressed, marginalized, chronically ill and/or isolated individuals. this potential may have important implications for counselling such clients. the possibility of including a pet in counselling sessions and the inclusion of companion animal relationships in assessment of client resources or struggles involves the advancement of counselling techniques. in this way, counselling psychologists would be more comprehensively addressing the experiences and psychological needs of the people with whom we work. companion animals as a source of positive emotion current theories of positive psychology, emotion based therapies and neuropsychology strongly suggest that the experience of positive emotion is associated with higher levels of creativity, clarity in thinking, wellness and quality of life (fredrickson, ; ). neuro- imaging research suggests that romantic and maternal love and attachment stimulate both oxytocin levels as well as the brain’s reward system, while suppressing activity in regions associated with negative emotion in humans and other animals (bartels & ziki, ). miller, kennedy, devoe, hickey, nelson, and kogan ( ) found similar results, particularly for women, upon examining them interacting with a bonded dog. studies on the neurological maps of human / animal interaction such as petting one’s dog demonstrate that they are associated with the activation of positive emotion and suppression of negative emotion (brodie & biley, ). as such a focus on building intimacy through companion animal bonds could provide potentially rich sources of stress and anxiety relief, problem solving abilities, increased fulfillment and possibly decreases in depressive symptomatology. conclusion substantial learning and clinical benefit may be possible through the appropriate inclusion of companion animals to the counselling psychology field. my intent is to apply my knowledge of the human animal bond and the experiences of people with cancer to gather a richer understanding of the helping and hindering components of these relationships for people facing adversity. the human-animal bond or connection for people with cancer provides a rich and untapped resource for innovative counselling psychology and psychosocial oncology research. beck and katcher emphasize these points: all future studies of human health should consider the presence or absence of a pet in the home, the nature of this relationship with the pet, and how the occupants interact with other aspects of the living environment as a significant variable. no future study of human health should be considered as comprehensive if the animals with which they share their lives are not included. in sum, there is solid evidence that animal contact has significant health benefits and that it positively influences transient physiological states, morale, and feelings of self-worth; however, there are many inconsistencies in the literature. we do not know the magnitude of the health benefit, the populations that are beneficially or adversely affected, or even how pet ownership compares to other ways of enjoying the living environment. (beck & katcher, , p. ) given the review of the literature, there exist gaps in both the counselling psychology and psychosocial oncology fields regarding the relationships that people facing illness have with their companion animals. therefore the purpose of this research has been to explore the benefits and drawbacks of having a companion animal while facing cancer. it is my hope that the careful listening and presentation of the experiences of a group of individuals who have lived this phenomenon will begin to shed some light on the matter. chapter method overview this chapter describes the research method employed to address my research question, the enhanced critical incident technique (ecit). the philosophy and process of ecit will be presented with details of their application to the study. in order to fully represent the richness of the participants interviewed, short personal accounts were also composed. for this component of the research, the same process used for category development in ecit was employed. suitability of the enhanced critical incident technique the research question “how does having a pet enhance and/or detract from a person’s sense of wellbeing during their cancer experience?” was addressed by the enhanced critical incident technique (butterfield, borgen, maglio, & amundson, ; butterfield, borgen, amundson, & maglio, ). ecit is useful as an exploratory tool in the early stages of research (woolsey, ) and is considered to be versatile and robust for innovative research (butterfield et al, ). it comprises procedures for collecting and exploring experiences and observations of human beings in ways that facilitate their usefulness in solving problems and developing psychological principles (woolsey, ). this research concerns itself with the experiences, interactions and perceptions in a human- companion animal relationship that has potential to contribute to both clinical and theoretical arenas in relationship psychology and psychosocial oncology. the enhanced critical incident technique (butterfield, borgen, maglio, & amundson, ) was used to explore what aspects of the human/companion animal relationship help and hinder the subjective wellbeing of individuals with cancer. an ecit study involves three research phases. first, the researcher explores the context of the experience under investigation. the next phase is to inquire about what helped or hindered the phenomenon being studied. finally, the researcher investigates suggestions regarding what would improve the phenomenon. part of the reasoning for selecting this method is because one of the challenges put forth by hab researchers and critics alike, is that human animal studies are most often conducted by pet lovers and therefore are biased toward the positive stereotype of a loving and devoted companion animal (beck & katcher, ). embedded in ecit method is the equal focus given to helping and hindering aspects of a particular phenomenon and as such, participants will be asked to explore both the helpful and unhelpful aspects of having a pet during their cancer experience. a second strength of the method is that it is ideally suited to new areas of inquiry as it involves the reporting of direct observations of self and others. finally, ecit is a method that was developed by counselling psychologists and is designed for practical and clinical application (butterfield et al., ). researcher positionality epistemology and ontology in keeping with the principles of humanistic psychology, i believe that human experience is a personally and socially constructed phenomenon, and not one that can be captured comprehensively in a static way. the experience of any living creature can only be known to another and possibly to him /herself in a limited way, as it is an ever-changing phenomenon. as such i position myself as a relativist with an interpretivist stance (ponterotto, ). in particular i certainly do not assume that i, or anyone could achieve a full understanding of the experience of a non-human animal that communicates in different ways than we do. i apply this same view of the limits of understanding other human beings’ communication and use of language. the experiences of the participants have only been captured in part through language, and ultimately do not remain the same with changing perceptions, personal experience and in particular, interactions and discourse with others. throughout the research process my role has been to unearth meanings, describe, and interpret the experiences of the human participants to the best of my ability (haverkamp & young, ). it has also been my responsibility to reflect on and be open about the impact of my own perceptions and experiences. the study aims to reflect high ethical standards, transparency, reflexivity and honesty with the participants and myself. along with my interpretivist stance my approach to research is both practical and clinically oriented. there are themes and patterns in the behaviours, feelings, thoughts and experiences of living creatures that can serve to elucidate what may be beneficial or harmful to others in similar circumstances. because i seek to situate my research in the clinical arena, my purpose for this research is primarily theory and practice-oriented as outlined in haverkamp and young’s discussion of the rationale for qualitative investigations ( ). my hope is to contribute to the counselling psychology and psychosocial oncology literature by introducing the human animal bond as an important aspect of client/patient care. humanistic model and unique application of hab research in accordance with a holistic approach, my view of relationships, including those of a psychotherapeutic quality and those of a human/non-human form, values to the utmost the basic principles of respect, trustworthiness, genuineness, and care. these principles are grounded in the theory of humanistic psychology, in which humanistic theory situates itself, and where i too am located as a person, a clinician and a researcher. franklin, emmison, haraway, and travers ( ) propose the development of an entirely new approach that they are calling trans-species methodology. this would require a team of researchers who have expertise in both human and animal communication, behaviour, emotion, and motivation. there is likely an inherent power differential in most human-companion animal relationships that requires an additional ethical component to research on the subject. in addition the ability to explore any pet’s experience is limited due to differences in communication modes. because my knowledge base is primarily in human phenomena i proceeded with the goal of initiating my research into the hab from a nearly exclusively human vantage point. in order to approach the research without trepidation, i liken this study to investigating one partner in a friendship, marriage, partnership, or relationship. throughout the study i have noted my thoughts and observations in this regard, and paid special attention to participants’ perceptions about the wellbeing of their companion animal. i was able to meet many of the pets during the interviews that i conducted, and when this was not possible i requested that participants bring a photograph of their pet to the interview. this gave me the opportunity to observe and/or participate in the relationships held by participants and their companion animals, thereby enriching the data. while my expertise does not lie in the field of animal behaviour, i have incorporated both the participants’ and my own perceptions of the experience of the companion animals in the study. in many of the categories that will be described in chapter iv, it becomes evident that a good portion of the participants’ experiences of their pet are based on perceptions of what the pet was feeling or thinking as well as the meanings participants gave to pet behaviour. situating the researcher and personal reflexivity because of my personal experience with my own pet during times of personal distress and my eighteen years of clinical experience counselling individuals and families facing cancer and other illnesses, i believe that the relationship between pets and human beings during times of adversity can be significant. it is my belief that people typically need to be cared about; to be touched; to express themselves openly; to be accepted for who they are; to trust those around them; to be useful to others and to nurture; to feel a sense of belonging; to be validated and affirmed by others; to make meaning of their lives and to experience joy as well as suffering. by all accounts, a satisfying companion animal relationship has the potential to fulfill many of these human needs, during times of wellness and times of distress. in many ways, my first dog with whom i and my family cohabitated for thirteen years, provided many of these things for me, and in particular, offered a comforting presence, hope, affection and security throughout some very painful losses. since his death four years ago, i felt a distinct loss of companionship not unlike the loss of a family member. in my years of counselling individuals and families facing cancer and other illnesses or adversities, i have encountered numerous people who have also experienced their pet as a source of great support and companionship. they described rich stories of impactful relationships and events shared with their companion animals. conversely i have also worked with individuals who found their pets to be a nuisance or an additional burden. these personal and professional experiences form the backbone of my interest in exploring the phenomenon of companion animals and people facing adversity. mertens ( ) explains that the qualitative researcher should monitor his/her process from the beginning of the study right through to the end and share this process with someone who has an open mind and can challenge the researcher’s beliefs. in order to maintain transparency in the research process and increase trustworthiness, i kept a journal of my reactions to all the components of the study. i consulted regularly with my thesis supervisor dr. marla buchanan regarding outstanding interpretations and biases. elements of my personal reflections throughout the data collection and analysis processes are included throughout this report. a relativist ontology and an interpretivist epistemological approach to the research is consistent with my belief system as they emphasize the uniqueness of the individual and collective experience as well as the awareness that no phenomenon can be captured and described in its entirety. i acknowledge that as a researcher, my beliefs are present in all my interpretations, and that neither i, nor any participant could fully represent human experience through language. i recognize that self-reports and languaged accounts provide a limited representation of experience (polkinghorne, ) and that my beliefs will inform the data collection, interpretation and results to some extent. nevertheless, it is my belief that some shared human experience exists and that themes can be developed when a topic is handled responsibly, openly and with the involvement of multiple stakeholders. such themes may serve to develop theory regarding the hab and may also inform clinical practice. counselling psychologists have developed ecit with this in mind (butterfield et al., ) and this is part of the appeal of the method for me. origins of the critical incident technique and ecit the critical incident technique was developed by john c. flanagan ( ) through studies in the aviation psychology program of the united states army air forces in world war ii. the technique assisted in the development of procedures for selection and classification of pilots and other aircrew members and candidates. flanagan sought to establish a basis for pilot selection and performance that relied on the observation of specific behaviours rather than vague comments such as “lack of inherent flying ability” which had previously been used. flanagan’s procedures were found to be very effective in developing a systematic analysis of successful and unsuccessful performance in aircrews. from these origins, flanagan and other psychologists developed and expanded the application of the critical incident technique into other areas. the paradigm for research in this era was largely positivist. numerous studies were carried out in order to determine the critical requirements for specific occupational groups or activities such as dentistry, industrial foremen, bookkeeping, sales clerks and instructors of psychology courses (flanagan, ). the technique has since been used in diverse fields for a variety of purposes and has moved into the relativist paradigm. its flexibility is due, in part, to its basic, practical, and fundamental approach to research. flanagan states: “people have been making observations on other people for centuries...what is most conspicuously needed to supplement these activities is a set of procedures for analyzing and synthesizing such observations.” (flanagan, ) there are five steps that comprise the original critical incident technique. these are: . determining the aim of the activity to be studied; . setting plans, specification and criteria for the information to be obtained; . collecting data; . analyzing the thematic content of the data; and . interpreting and reporting the findings (woolsey, ). as the method has been employed quite regularly in the counselling psychology field, it has grown and developed as a qualitative research tool in this domain. as such a group of counselling psychologists revamped the method, which is now known as the enhanced critical incident technique (butterfield, borgen, amundson & maglio, ; ). the developers of the ecit modified and added to flanagan’s original method by changing the focus from direct observation to retrospective self-report and the incorporation of several new components to reflect the current state of qualitative research with respect to data collection, data analysis, and achieving credibility (butterfield et al., ; ). the five original steps remain, however with modifications. of primary importance and appeal to me, ecit now begins with a contextualization section intended to locate the phenomenon in the unique context and experience of the participants. this provides a meaningful backdrop for the helping and hindering incidents that are discovered. in ecit, the term incident represents any experiences, factors, events or perceptions that either help or hindered individuals in the intended phenomenon, in this study, this refers to anything in regards to having a pet that helped or hindered wellbeing during their cancer experience. nine credibility checks have been added that reflect the current state of criteria of worth in qualitative research. finally, participants are now asked to generate a “wish list” (butterfield, ) to further elucidate factors that ideally could have contributed to the phenomenon. study procedures participant selection criteria. the criteria for inclusion in the study were: ability to speak english; self-identify as cancer patient or survivor who has or had a relationship with a companion animal for at least three months during their cancer experience; minimum of six months post-diagnosis; and over the age of eighteen. there were no restrictions placed on gender, ethnicity or type of pet / companion animal. ethical considerations. the study was approved by the ubc behavioural research ethics board (appendix h). because i am employed as a clinical counsellor at the british columbia cancer agency (bcca), i did not interview any patients who i have seen or was scheduled to see in my position of employment. in addition, any work that was done on this research study at the bcca was conducted outside of my hours of work, and not for remuneration. finally, because some interested participants were in treatment or experiencing post-treatment and/or disease-related symptomatology, i suggested that they check with their physicians as to whether it was a suitable time for them to participate in this research. when a participant became distressed during any part of the research process, i stopped and reminded them they had the option of terminating their involvement in the research. i also informed them of resources for free counselling. because i am a trained counsellor who works in cancer care, i was able to provide support as necessary without engaging in therapy. in addition, dr. marla buchanan and dr. marv westwood made themselves available for provision of a debriefing counselling session for any participant. this was not needed following any of the interviews. recruitment. recruitment posters were placed in multiple health care agencies, pet care locations, businesses and public posting areas relevant to the research population. i was in contact with staff from the british columbia cancer agency, lion’s gate hospital, st. paul’s hospital, inspire health, mt. st. joseph’s hospital, canadian cancer society, tisol pet shops, vancouver parks board, starbucks, and bosley’s pet shops. after some communication and provision of the study’s ethics approval, i was permitted to place posters at all sites. in addition, i sent a “blind copy” group email (appendix c) to colleagues and friends working in oncology and/or counselling as well as friends or acquaintances who might be familiar with people who have a pet and have had cancer. attached to the email was the letter (appendix b) to patients and/or clients. the email explained that i would not be informed of the names of those who might be contacted about my research, but that any interested party could contact me by email or phone. when contacted by phone by any potential participants, i spoke with them briefly and provided them with an introductory letter and informed consent (appendix d) by email, fax or post, depending on their preference. interested individuals were given ten days to review the material and those who wished to participate were asked to contact me again. i was contacted by individuals with whom i spoke personally. of these , fit the inclusion criteria. of these individuals, fifteen were able to schedule initial interviews. two of these fifteen had to cancel interviews due to advancing illness. the remaining five individuals from the group of did not make contact again with me after i attempted a second call regarding study participation. interviews. interviews were held in various parts of british columbia including vancouver, surrey, coquitlam, kelowna and victoria. participants were offered a choice regarding their preference of interview location. the only request / stipulation was for neutral space where there could be quiet and confidentiality. eight interviews were held in the participants’ homes, two were held in my home, two were held at the participants’ workplaces and one interview was held at ubc in a counselling psychology program office. pets were invited to all the interviews however the five interviews held outside of participants’ homes did not have any pet present. when the pet was present participants were able to demonstrate some of the factors about their interactions with their companion that they felt were significant. this contributed to the richness of the data as proxemics and other forms of non-verbal communication such as touch were observed. in cases where the interviews were held outside of participants’ homes, individuals were invited to bring a photograph of their pet to the interview. this occurred only once out of those five interviews. informed consent. the informed consent form (appendix d) was sent to each participant as part of the introductory package. during the first meeting, the form was read and explained to each individual before the research process began. all participants willingly signed the consent form at the first meeting, ensuring they understood and accepted the parameters of the study. i reminded them again that at any time, they were free to leave the study should they so desire. honoraria. a small honorarium consisting of a ten-dollar gift card to a pet store or a coffee shop was provided to each participant. this choice was offered to each participant as some participants no longer had their pet and i wished to be respectful of this loss. i paid for these honoraria personally. participants thirteen female participants and no males participated in the research study. their ages ranged from to years of age. the number of participants required in ecit to achieve an exhaustive set of categories is dependent upon when new findings stop emerging from the data (butterfield et al., ). while this seemed to occur after the eleventh interview, i had three more interviews scheduled and did not feel it would be ethical to cancel them. one of these final interviews was with the only male to inquire about the study. unfortunately however, he was unable to participate in the study due to advancing illness. personal accounts describing the participant’s relationships with their pets will be presented in chapter . on the following page, table presents basic demographic, pet and cancer information about the participants. table participant demographics & biographical information part# age gender marital status cultural background occupation # of children number & type of pets during cancer type / site of cancer had pets before cancer f m scottish/ norwegian architectural technologist dog sarcoma y f m english social worker dog breast ca y f m canadian lawyer dogs, horses, several cats colorectal ca y f m irish / scottish / german retired dog melanoma y ? f s canadian firewatcher / student dog breast & ovarian ca y f s english canadian retired dogs breast ca y f m canadian manager stepchild dog breast ca y f m european / icelandic / ukranian manager dogs breast ca y f d european retired healthcare executive cat breast y f cl american/ canadian/ italian journeyman welder / law student dog non- hodgkins lymphoma y f m spanish/ canadian bank advisor dog breast y f d polish canadian ultrasound technician dog cutaneous t-cell lymphoma y f m east indian lawyer dogs breast ca y data collection and analysis five steps in conducting ecit step : ascertaining the general aims of the activity being studied. butterfield et al. ( ) explain that the first step of an ecit study is achieved by answering the following two questions: (a) what is the objective of the activity? and (b) what is the person expected to accomplish who engages in the activity? ecit experts recommend the use of simple phrases to denote the objectives. in this study, the literature review and the researcher’s clinical and personal experience are used to functionally describe the activity. the purpose of this study was to learn about the relationships between people with cancer who have a pet. thus the purpose of the interviews was to explore the benefits and drawbacks of having a companion animal while facing cancer. the participants themselves will speak to those elements about their pets that helped or hindered them while they faced cancer. step : making plans and setting specifications. an interview guide was developed in accordance with the goals of the study and was utilized (appendix e) for all interviews. demographic information was collected after the first interview so that the focus of the interview and content was established as being the participant’s experiences, rather than any of their descriptive characteristics. step : data collection. obtaining the data from multiple sources is consistent with responsible and credible qualitative research. data was generated through three sources: first, individual oral interviews were held following telephone and email contact. secondly, field notes, consultation with my supervisors and a journal of my observations and perceptions were utilized. finally, a member check by phone or email was attempted with each participant. multiple data sources help support the confirmability and transferability of interpretations and conclusions (morrow, ). interviews. thirteen interviews were conducted and held as open-ended qualitative discussions with guidelines but minimal direction (appendix e). i met with participants after speaking with them by phone or email to establish a good fit for the study. the depth of interest immediately struck me from all interested parties. on the telephone calls, participants thanked me for choosing to focus on this subject as they reported that few people inquired about their pets throughout their diagnosis and treatment. i approached each interview with warmth, curiousity, openness and non-judgment. field notes were written immediately after each interview to ensure that paralinguistic elements and researcher impressions could be incorporated into the data analysis. the interview process began with the execution of the informed consent form (appendix d). next, the interview was conducted in three phases. a full description can be viewed in the interview guide (appendix e). phase : contextualization of participant experience. each interview began with a contextualizing section whereby participants were invited to talk about their pets and their relationships with them while they had cancer. a version of the following statements began the data collection phase of the interview: ) “i am interested in your experience of having your pet. please share with me a little about them, can you tell me a little about how he/she came into your life?” and )” tell me the story of your relationship with (pet’s name) while you faced cancer.” following these questions, participants were asked to describe their personal definition of wellbeing during the cancer experience. here the following questions were presented to participants: “what does wellbeing mean to you in the context of your cancer experience / how might you define wellbeing while facing cancer? “ phase : exploration of helpful and hindering incidents. the second section of the interview involved a comprehensive description of the critical incidents (cis) experienced with their pets that contributed to and/or detracted from the participant’s sense of wellbeing during their cancer experience. participants were asked to explain the importance of each factor and provide detailed examples. (zheng, ). i employed open-ended prompts including: “can you explain a little more how that helped or hindered you? and “are there any other experiences that feel important to you about the way your pet impacted you and your family while you had cancer?” this served to enrich participants’ descriptions as well as to ensure that as much of what was significant to them was shared during the interview. phase : wish-list items this last phase of the interview consisted of an exploration of behaviours, interactions, or other factors that participants believe they would have benefitted from in relation to their pet during their cancer experience. data management. with the aid of a professional transcription company, interviews were transcribed verbatim as soon as possible following the interview in order to stay close to the data. the interviews were listened to multiple times and changes in voice tone as well as field notes indicating paralinguistic elements were noted on the transcriptions by me. transcriptions were stored with a password known only to the researchers. participants were assigned case numbers ( - ) and any identifying information about the participants or third parties was removed from the transcripts and/or coded to ensure anonymity. step : data analysis. data was analysed in accordance with the ecit guidelines as outlined by butterfield, borgen, amundson and maglio ( ; ) and woolsey ( ). some of these steps were modified as needed following data collection as per an emergent design and will be discussed in chapter . traditionally, ecit data analysis consists of three steps: . determining a frame of reference: this step refers to the intended use of the data and results generated by the study. the clinical arenas of counselling psychology and psychosocial oncology provided the primary context for application of the results. . formulating categories: the formulation of categories is a very subjective process that requires “experience, judgment, and insight” (butterfield et al., , p. ). because i am familiar with both the areas of cancer and companion animals, my experience in these areas helped provide sound judgment. the three sections of each interview were analysed separately. within each phase of the interview, similar statements and were grouped together and coded. for phase , incidents were considered to be critical (referred to as “significant” during the interviews) when the participant could recall specific details about the experience or event regarding their companion animal, and / or were able to explain what it was about the experience that enhanced or impaired their sense of wellbeing. cis were separated into helpful (he) and hindering hi) groupings. this enterprise involved a repeated series of colour coded highlighting directly on the transcripts, separate coding lists, and extracting critical factors in the data. codes were initially extracted as quotes from the transcribed interviews and then put into simple phrases maintaining some verbatim content. cis that were connected or similar were placed into initial categories and checked with dr. marla buchanan and dr. bill borgen. following this, repeated themes were collapsed into categories. this process was repeated multiple times until a level of specificity was reached that suited the frame of reference of clinical application in counselling and psychosocial oncology realms. all the developed categories were subject to the nine rigorous credibility checks central to the ecit method and are described in the next section, ecit credibility checks. . establishing the level of specificity-generality to be used in reporting findings: this was determined by examining the degree of usefulness for theory development and clinical application. details of this will be covered in chapter v. step : interpreting the data and reporting the results. a dated, detailed log of each interview with the participant case number and the extracted cis and wl items was created and utilized to organize and work with the data. this log was further used to develop ci and category lists for validation checks with participants and professionals familiar with the content and/or the ecit method. the rich personal nature of the data leant itself to personal accounts representations of each participant in addition to the wellbeing definition analysis and incident and category formulations. participant personal accounts. in order to appropriately and accurately reflect the richness of the data provided in the interviews, a ‘personal accounts’ component to the report was added to the ecit method. this additional component serves to represent the contextualization section of the interviews where participants were asked to talk about their relationships with their pets. this section of the interviews was very full, idiosyncratic and rich for every participant and as such could not be sufficiently reported by the categories. participants were very specific and detailed about a number of areas that will be outlined in chapter iv. as such, i listened multiple times to this section of the interviews and read the transcripts repeatedly in an effort to gain some understanding of each participant’s experience with their pets and with having cancer. from this i identified themes that were present in each of their stories. in combination with the moving experience of being present while these stories were told and immersing myself in the stories and details of the interviews for considerable time thereafter, i created personal accounts. all the participants who read their stories endorsed them. the accounts told by participants about their pets and their cancer experiences added important context to the remainder of the interview, which ultimately led to a fuller and richer formation of the helping and hindering incidents and their categories. ecit credibility checks. butterfield et al. ( ; ) developed the following nine credibility checks that were implemented and modified as necessary for the interpretation and reporting of the data. independent extraction of critical incidents. this refers to the convergence of researcher coding of incidents with an outside person familiar with ecit. after every third or fourth interview, a portion of the raw transcripts was submitted to dr. marla buchanan who was asked to select out factors that appear complete as per the definition provided earlier. the selected factors were then compared to those that were extracted by the researcher. following multiple discussions about the cis and their thematic content we were able to converge on the final categories. there was a very high level of nuance in several of the cis and categories. several incidents could logically be placed in more than one category and it took some time to agree upon the distinctions that would be relevant to both the clinical and theoretical realms. this check served to increase the credibility that the factors extracted were indeed critical elements of emotional wellbeing related to the participant’s pet. cross-checking by participants. mertens ( ) states that the member check is the most important criteria in establishing credibility and confirmability. confirmability refers to the confidence that the findings of the study are primarily rooted in the source of the participants and that my interpretations are as transparent as possible (morrow, ). following the initial analysis of the data, i contacted each participant by email or telephone, as per their stated preference in the initial interview. the participants received a participant check letter (appendix g) with a draft report including: their brief biographical personal account describing their experience of having a pet; their definition of wellbeing during cancer; a summary of the categories and incidents and their working definitions; and any of their quotes from the transcribed interviews intended for publication in the final report. participants were asked to assess whether they felt their experiences were well represented, whether something was missing or unrepresentative of their experience, and whether or not the categories made sense to them. i was able to reach of the participants but did not hear back from two of them after multiple attempts by telephone and email. after consultation with my supervisory committee it was agreed upon that it would be acceptable to include data from their interviews, in part because they had signed the initial consent form and because i had communication with them after the interviews in which they stated that the experience was positive. there was sufficient confidence to include data from these interviews as out of participants endorsed the categories so strongly that this provided sufficient strength to include the two i did not hear back from. particular attention, however, was paid to these two personal accounts to ensure sensitivity and anonymity, and no direct quotes of theirs were used in the report. one of the participants who responded to my initial email explained that she was feeling too ill to be able to read and comment on the material. i reminded her that this was completely understandable and that any participation in any part of the study was entirely voluntary. while this participant requested a copy of the member check package as well as the final report, she explained that she would be unable to provide any feedback about them. naturally, this was completely acceptable. the remaining participants provided feedback about their member check packages by email and/or telephone. in my communication with them, i invited participants to expand upon any information or incidents that came to their mind since the interview. all ten expressed gratitude and appreciation for participating in the study. all ten endorsed the categories and incidents fully and expressed a sense of comfort, reassurance and pleasure in noticing the common themes that came from other participants’ experiences. several participants requested small changes or edits to their personal accounts including: corrections to details regarding person’s and pet’s ages; years when events occurred, and specific cancer details. one participant requested an additional description of some activities she did with her pet to be added to her personal account and a second requested the addition of a portion of her personal story be included. all ten participants endorsed their quotations for publication in the report. one participant offered additional context for some of her quotes and i added some of this to her personal ccount after explaining to her that the purpose of the quotes was to represent the categories but preserve confidentiality. otherwise, all edits and corrections were implemented into this report. placing incidents into categories by an independent judge. for this validation check, i worked with an independent judge who is a colleague in the ubc phd program. as a current researcher and experienced clinician she has shown great interest in my study and its design. she was presented with the category headings, their operational definitions and a random set of % of the critical incidents in each category. the judge was asked to place the incidents in the categories where she felt they belonged. these placements were compared with my own. incidents were presented to the judge and her initial placement yielded a % match rate with my placements, below the ecit credibility goal of %. as a result, we looked carefully at the incidents that each of us had allocated to different categories. we discussed at length the subtleties of some of the categories and several changes were made to the category location of incidents. this work resulted in a % match rate; now well above the % ecit requirement. exhaustiveness. by using the log, i was able to watch as new categories emerged with each interview. after interviews, it appeared that new categories stopped emerging from the data. following every third of fourth interview, i checked the cis with dr. buchanan and we worked together to establish newness or repetition. all remaining interviews were held following the eleventh, despite apparent redundancy as the interviews had been scheduled and the ethical choice was to keep the arrangements. while new incidents emerged in the two final interviews they all could be represented by the existing categories. expert opinions. following the validation checks, the categories were submitted to two experts in the field. i sought out one psychosocial oncology professional and one animal expert to assist with this task. the psychosocial oncology professional is a clinical specialist and supervisor in the bc cancer agency patient and family counselling services department. the animal expert is a pet storeowner and a -year animal rights activist in british columbia. both professionals were sent a package by email that included: the participant personal accounts; the categories and their descriptions and accompanying quotes; and the first chapter of the thesis. they were asked to assess the usefulness of the categories and comment on any perceptions and unexpected or missing content in the personal accounts or categories based on their knowledge and experience. the psychosocial oncology professional commented that she found the personal accounts and categories as well as the quotations to be consistent with her clinical experience and observations. she also noted that given her own experience as a pet owner and supporter she found the information to strongly coincide with her own experiences and observations of friends and family with companion animals. in my communication with the second expert, a long time animal rights activist, pet store owner and keeper of multiple pet companions at home, i was pleased to hear that the results of this study were congruent with her professional experiences and observations. her written response to reading the personal accounts and categories included the following: these are stories and connections we hear about everyday in our industry, but to a much more heightened degree due to the circumstances. the repetition of experiences such as the pets just knowing their owners were sick and how surprised the owners were by their reactions and their understanding was both heartwarming and yet not very surprising based on the feedback i receive everyday from pet owners. the ability of animals to sense our needs and fulfill them wherever possible has become second nature to them, especially in the case of dogs but also to a large degree cats. some small portion may be attributed to us seeing what we want, and putting our own emotions onto our pets, giving them qualities or emotions that they are not in fact experiencing. but that does not explain so much of their behaviour, and so many instances of true love and devotion. feelings of guilt are something we hear of all the time as well, but again this was amplified in your study. for most of our clients it is a lack of time or financial resources, rather than a lack of physical ability. this study points to the real and genuine need for additional resources for cancer and other patients to help care for their pets, especially due to the very obvious therapeutic benefits they derive.” (l. gee. personal communication, july ) based on the responses from these two professionals, i feel confident that the findings of the study are well supported by experts who have direct experience in fields relevant to this study. theoretical agreement. categories were considered within the realm of both the existing literature and the researcher’s assumptions. categories were also reviewed to examine both the consistencies and inconsistencies therein. mccormick ( ) suggests that categories that disconfirm previous research might have to be questioned more closely, while categories that are consistent with related research may be used more confidently. the results support much of the existing literature as well as offer new insights into hab theory. unique findings and parallels to the literature will be discussed further in chapter . in terms of assumptions, this study posits that companion animals have distinct influences on the participant’s emotional, social, physical and cognitive experience. the results do support this assumption as outlined in chapter . in addition, some of the data from the interviews unearthed previously unexplored territory. these possibilities will also be discussed in chapter . participation rates. the purpose of this check is to establish the relative strength of each category by reviewing the participation rates therein. case numbers from the logs indicated the number of participants whose transcripts featured cis and wi items in each category. from this a percentage of the number of contributing participants was calculated (table ). i had decided beforehand that all categories were to be included in the report regardless of the level of participation rates as per my commitment to incorporating each individual’s experience whether or not it is consistent with others’ experiences. as such, no helping categories yielded a participation rate below %. hindering categories and wish lists, however yielded some low participation rates. all categories and participation rates are reported in chapter and serve to assist in establishing the credibility of the different categories (butterfield et al., ). descriptive validity. this check is concerned with verisimilitude. the accuracy of the incidents and categories must reasonably represent the participants’ experiences (morrow, ). for this reason, interviews were taped and transcribed with attention to the paralinguistics recorded in the field notes. codes and incidents were extracted directly from these transcriptions by the researcher and verbatim quotes from participants are used to highlight and represent the findings. the member checks also contributed to verisimilitude and soundness through participant corroboration and/or divergence. interview fidelity. the purpose of this check is to ensure consistency in interviewing. the first interview was considered to be a pilot interview in order to assess the feasibility of the interview protocol (appendix e). after consultation with my supervisor regarding the first interview we decided to proceed with the protocol as planned. after every fourth interview, i again consulted with my supervisor to ensure that there was a basic consistency in my manner of interviewing as well as to ensure the style was consistent with the ecit method, i.e.: that i was not overtly leading interviewees in a particular direction of interest. dr. buchanan expressed confidence that the interviews were appropriately open-ended, guided and consistent. representation of findings this paper makes every endeavour to reflect and represent what participants reported and felt about their relationships with their companion animal during their cancer experience. each participant was offered a copy of the study once complete, and all were invited to attend the university dissertation defense with family or friends. companion animals were not permitted to be present at the formal dissertation defense. summary of chapter the method and process of data collection, analysis and interpretation was described in this chapter. the next chapter will describe in detail all of these findings, hopefully in the ways that most accurately and respectfully represent them. chapter findings overview this chapter will present the findings from the interviews conducted for the study. it begins with brief personal accounts describing each participant and their relationship with their pet as well as basic details about their cancer experience. basic demographic data about participants has been presented in chapter and will not be repeated here. following the personal accounts, themes that emerged from the participants’ definitions of wellbeing are presented to provide additional context for the categories that were later developed. finally, the incidents and categories that emerged from the data are presented with substantial description and verbatim quotes to enrich their meaning and description. the themes generated from the wish list are included in the hopes that they may inform theory and/or clinical practice. participation rates for items in each category are included. themes, critical incidents and categories are recounted with a description of the emotional, sensory, behavioural and cognitive components that were reported by participants. all participants but two have endorsed the quotes, themes and categories that are included in the report, as discussed in chapter . because my experience and values have influenced the data collection, generation and interpretation processes, elements of my personal reflexivity are included in the reporting of the findings. participant personal accounts in this section, the reader is presented with personal accounts that briefly describe the participants, their relationships with their pets, and their cancer experiences. several notable themes emerged from participants’ experiences, namely, the seemingly fortuitous acquisition of the pet; the unique relationship with each different pet they have had; the quirky characteristics of each pet; and the devastation of their cancer diagnosis. even though not directly asked, the participants invariably shared substantial information about their cancer diagnosis and treatment. these personal contextual elements seemed to be as important, if not more so, than participants’ definitions of wellbeing. the incidents that emerged later in the interviews were largely relationally based and, as such, these personal accounts served to enrich the depth and meaning of the incidents and categories. there are two sections within each personal account: ( ) background & brief cancer summary, and ( ) pet history & relationships. personal accounts were composed with attention to maintaining anonymity while staying true to the experiences relayed to me in the interviews. each participant was invited to choose pseudonym for themselves, their pets, and their family members. two participants requested that i choose these names for them. it is of note that when asked to provide pseudonyms, of the participants stated that they wanted their story to be told in full with their identities known to the reader. i explained that this was not possible due to ubc research ethics requirements, however this topic will be considered in chapter v. all participants save the two who i could not reach during the member checks endorsed their own personal accounts. they are presented in the order that participants were interviewed. participant # anna and her dog jack background and brief cancer summary. anna is a year-old professional living with her husband “a” and dog jack in british columbia. after a long and arduous process, anna was diagnosed in the summer of with a rare type of cancer. the wait for the diagnosis was extremely difficult- she called it “the dark side” and explains that during this time jack’s quiet and calming presence was particularly comforting. even though anna’s mother is a cancer survivor, anna struggled with many fears and worries, “thinking the worst”. pet history and relationships. anna explains that she always had pets from the time she was a child, including dogs, cats, hamsters and fish. she and her husband had a dog prior to jack, who passed away in , a loss that was terribly difficult for both of them. in , they decided they were ready to adopt another canine companion. as soon as they drove up to the gate of the rescue organization, jack was standing there and anna remembers, “he just won my heart over” immediately. everyone at the organization loved jack, as he was a particularly sweet and loving dog who had been abandoned by his last owner. throughout anna’s experience dealing with cancer and the ensuing treatment, jack was a constant source of support and companionship. he helped her through physical and emotional pain, was always close by with affection and love, and gave her the motivation to walk and keep active. jack’s intuitiveness about anna’s needs and selflessness amazed her. in particular when she struggled with pain, anna was able to hold on tight to him until the pain subsided. at times it was difficult to get all of jack’s care needs met as she and her husband did not have a lot of people in the area to rely on. even still, when a family member offered to take the dog under their care for a few weeks after her surgery, anna expressed her gratitude but categorically stated, “i need him.” she subscribes to the saying that “you don’t always get the dog that you want, you get the dog you need.” anna was clear that jack was the dog she needed through this, “a dog that would stick to me.” as was clearly apparent throughout the interview, anna and jack continue to stick together, with much closeness and affection. participant # : stacey and her dog fluffy background and brief cancer summary stacey is a year-old health care professional who lives and works in british columbia. she is married and lives with her husband and dog and describes their house as always being very full. she and her husband have two adult children and have fostered numerous children over the years. after being diagnosed with breast cancer stacey was treated with surgery and radiation, both of which brought considerable pain and challenge. she faced the illness and treatment with the attitude “if i have this stupid disease i better learn something from it.” pet history and relationships stacey and her family had many dogs over the years. either her husband or one of the children would bring home a stray dog that needed to be looked after and the stray would soon become the family pet. finally stacey decided that the next dog in the house would be her choice. she researched the breed that she felt to be the right fit for her and the family. stacey went to see a litter of puppies and noted a particular gentleness in a pup that looked like “a lumbering little fluffy teddy bear” who followed his mother around. she brought fluffy home and it was an instant love affair for everyone. fluffy basically rolled over and said “love me.” the whole family did. stacey explains that when the children were young, fluffy was simply one of the kids. when the children moved out, the dog took on a different role. the emotional attachment grew in depth and fluffy became a focal point of nurturance and love. stacey stated and felt clearly that fluffy was “my dog”. this bond was of particular importance throughout stacey’s experience with cancer. she felt she could rely on fluffy with no guilt or expectation and was struck by the dog’s intuitiveness about her needs. fluffy was warm and affectionate, helped her with managing her pain, and showed a very palpable protectiveness over stacey. she spoke of the appreciation she felt for fluffy’s non-judgmental, loving and constant presence. stacey described the dog’s selflessness, devotion and loyalty to her as helping make the difference between “surviving and thriving” through the cancer. participant # : joanne and her dogs: timmy and meisha background and brief cancer summary joanne is a year-old professional woman living in british columbia. she is married and lives with her two children. currently the family lives with dogs, several horses and a number of cats living in and around their property. joanne was diagnosed with colon cancer just before her th birthday. alongside the trauma of a cancer diagnosis, joanne lived through multiple forest fires causing her and her family to move and/or evacuate different homes or trailers nine times during her treatment. during this time, the dogs often provided her with a sense of safety, but also a sense of worry. she expressed looking back at her burned and ruined home as a metaphor of the ruin in her own body being caused by her illness. joanne’s cancer journey was arduous, with multiple treatments and harsh side effects, combined with the diagnosis of cancer in several of her friends and co-workers at the same time. nevertheless, joanne described facing her treatment with her usual humour and positive attitude, so much so that she and her friends needed their own private room during chemotherapy so that they were able to laugh together in comfort. joanne continually expressed a genuine love and attachment to her dogs and all the animals in her world, as well as an appreciation of their presence in her life throughout the cancer experience. pet history and relationships joanne explains that she herself grew up with a cat as a child and always wanted to have a dog. her attachment to animals developed in part because in her youth, both her parents showed great appreciation and interest in many creatures including birds, squirrels and dogs. when joanne married, she and her husband got their first dog, a german shepherd, “b” to whom she was extremely attached. she described him as the ‘loveliest, perfect dog’ who died of natural causes at the age of . joanne noted that as much as she adored her dog, she had to somewhat “demote” him when her children were born. however, b took his new role very seriously and showed great protection over the young children, alerting her when they were crying for instance. the children also had rats, bunnies and cats when they were younger and spent much time with the horses as well. the family got two more dogs, timmy and meisha, who were both with her during her experience with cancer. timmy was a rescue dog who came to them at the age of years. joanne described him as the nicest dog, but also an unintentional troublemaker. he was easily scared by loud sounds, motorcycles, etc. and hated the horses, chasing them as well as cars regularly. these chases resulted in several hits by cars and numerous kicks in his face by the horses. joanne consistently described feeling very attached to timmy, despite and in part because of his quirks. he was affectionate and cuddly with her and always a very loving presence. their second dog, meisha came to the family as a puppy who was simply too cute to resist, as they were not planning on getting a second dog. he was the offspring of an extraordinary dog who joanne’s secretary took in from the street outside their place of work. meisha had health problems and was more work to take care of for all the family, however joanne felt very close to her and showed great patience. joanne described with great delight and humour how neurotic both dogs were, how they both needed anti-anxiety or ocd medication, but that she adored them completely. she describes one particularly poignant experience when she had to put timmy down a week after her last chemotherapy treatment. despite his usual disdain toward the veterinarian, joanne describes how timmy quietly welcomed him in the house and lay down and relaxed, next to his ham and steaks by the fire, letting go of life while looking up at her with complete trust. soon after this, joanne describes a possible visitation by timmy, whereby birds surrounded his most hated horse and stood there momentarily in a circle before flying off and leaving a feather at her back door. when i asked joanne what she felt this might have meant, she explained that she felt a sense of gratitude as she thought timmy was saying “thank you” and letting her know that he knew how much she loved him… and also, how much he hated that horse! joanne’s stories spoke of the broad range of practical and emotional elements involved in having a pet, and of the enduring love that lasts despite and in part, because of their quirks and qualities, sounding much like my image of family. participant # : lila and her dog louie background and brief cancer summary lila and her husband b live in british columbia with their dog louie of years. they have adult children and grandchildren. in , after working in a management position she loved in the insurance business for many successful years, lila decided to retire at “the top of her game”. as a dog lover, she became a volunteer dog walker for the spca thereafter. in , lila noticed a lump under her skin and was devastated to find out she had an aggressive melanoma. within a week, she had undergone a full set of scans and tests and was booked for surgery. though she was both frightened and overwhelmed at the time, lila expresses a sense that there was a “divine hand” involved in her treatment. several dates and events converged in meaningful ways and she was brought back to full health after experiencing some “unbelievable things during her journey.” pet history and relationships lila and her husband are both dog lovers. they had their beloved spaniel “h” for years. unfortunately in , just around the time that lila’s mother was dying, they had to put h down, as she was over years old and very ill. naturally this was an extremely trying time for the family. about eight months later when lila was volunteering at the spca walking dogs, she caught the eye of a golden retriever with a ‘rap sheet’ sitting in his kennel. it is unusual for this breed to be at the spca and lila became both interested and curious about him despite the fact she was not looking for another dog. lila wanted to walk him but the staff was considering him for enrollment in an animal assistance program. she signed her name up and was th on the waitlist for the adoption application. the spca staff recognized her contributions as a volunteer, and louie came home to live with lila and her husband b in his forever home. lila describes louie as a deeply intuitive creature who is a significant part of her healing process. she was touched by his ability to be present and give love unconditionally and without judgment. lila explains that she has observed this same quality in louie around other suffering people. lila took louie through the st. john ambulance therapy dog program when he was . he passed with flying colours and the two of them volunteered at a seniors/nursing home visiting a number of residents weekly. he loved them and they loved him. louie was a real caregiver to lila when she had cancer. together they walked, cuddled, and shared all the ups and downs of her experience in the most genuine of ways. lila feels an incredible sense of good fortune that this dog is a part of her life and considers louie to be a blessing. participant # : daisy and her dog haro background and brief cancer summary daisy is a young woman who lives in british columbia. she worked for many years in northern canada in forest work, and it was there that she got her dog haro. years later in , daisy was diagnosed with breast cancer and has been fighting the illness with a variety of traditional and non-traditional approaches since that time. cancer has brought enormous difficulty and disappointment to daisy’s life and she continually faces this arduous journey with a feisty, philosophical and independent approach, much as she describes her dog haro to be. pet history and relationships during the time that daisy worked in northern canada, she needed a dog for safety and protection. her father happened upon the four year old haro, who needed a home after his former owner who was an elderly man had to move out of their apartment. daisy recounts her early memories of haro who she first met at a farm where he was dirty, covered with mats and constantly barking for attention: “he was a pudgy little dog who didn’t know he was a dog.” she and her father cleaned him up and he turned out to be a gorgeous dog who expected all the attention and the petting from everyone around him when he was young. daisy described him as quirky and in no way your typical dog. haro’s unique personality seemed to be why she thought of him as “the greatest dog, just fantastic.” haro lived to the very old age of and daisy believed he had nine lives. unfortunately in the last chapter of his life, daisy herself was also very ill with cancer and unable to fully care for all his needs as she wished she could have. this caused her great sadness, as she would have liked to be able to give haro the ending she feels he deserved after being such a good dog. along with this sadness, daisy has many wonderful memories of her inimitable companion haro. participant # : alice and her dogs coral and mini background and brief cancer summary alice is a retired professional living and volunteering in british columbia with her dog mini. alice faced significant employment challenges in the late ’s when cutbacks were closing in on hers and many others’ positions. at that time, she chose an early retirement that she believed would be temporary. she set out to travel across the u.s. with her dog, and had many incredible experiences. unfortunately, alice’s later experiences with the diagnosis and treatment of cancer were fraught with many challenges. after a protracted period of time without a regular physician, but a sense that something was very wrong, alice was diagnosed with breast cancer. she describes a terribly painful experience, both physically and emotionally as a result of the treatment and the disease. pet history and relationships before alice adopted coral, she had always had cats, bunnies and birds, from childhood through adulthood. once she left her place of employment and dealt with an earlier illness, alice had a vision of travelling across the u.s. with a dog in an r.v. she set out to research and find her canine companion. unfortunately just around the same time, she experienced a robbery at her home. as a result, protection became another good reason to get a dog. she and coral put on their seatbelts and proceeded on their big trip. alice explains that having coral with her afforded her many wonderful opportunities to socialize that she believes she would not have had if she were travelling alone or with a human companion. alice clearly states that for her, the dog was an essential part of her life in particular because she lived alone. having coral increased her sense of safety, her exercise level, her social interactions and feeling of companionship. alice also volunteered extensively with coral visiting elderly and infirm individuals with a group of devoted animal lovers. this activity was something that both alice and coral particularly enjoyed as well as it providing a source of purpose meaning to alice. she has continued on with this volunteering with her new dog mini. not surprisingly, coral’s death was devastating to alice. she had gone through a terrible experience with surgery and describes a time of “bottoming out” in her life where the only way she felt she could cope was to get in her car and drive. driving was something that tended to relax her throughout her life and alice followed her gut and drove back down to the u.s. there she found herself near a kennel run by a woman she knew. alice chose to adopt another dog very purposefully after some very difficult experiences. she knew that having a dog would bring back a sense of vitality, love and hope back to her life. alice explains that some people criticized her for getting a dog at this low point in her life. this was particularly hurtful as she stated: “if you were going to come back as a dog, you’d want to come back as my dog.” not surprisingly, alice’s internal sense was completely correct. mini stood by her through the remainder of her health challenges and has remained her tried and true companion. alice’s relationships with both her dogs coral and mini have helped bring her back from the bottom to a place of healing and hope. participant # : barbara and her dog prince background and brief cancer summary barbara is a year-old professional and avid athlete who lives with her husband “b” and their recently acquired new dog hercules. their first dog together, prince lived to the age of and she explains that their bond was very strong. he was present with her throughout her experience with cancer and helped her in a myriad of ways. barbara was diagnosed with cancer in , what she refers to as the “wipeout year.” during that time she underwent surgery, chemotherapy and radiation, which she described as the “scariest, hardest time” in her life. as such barbara was often housebound and struggling with side effects from the intensive multiple treatments. being a very fitness-oriented person, this inactive alone time was often hard to bear. barbara explains that with prince by her side, however she never felt lonely. when her treatment did finally come to an end, she was chosen by chance to participate in the torch run for the vancouver olympics. barbara describes this event as nothing short of miraculous, allowing her to complete her cancer treatments with a dream that came true. pet history and relationships barbara had a dog growing up and has always loved canines. her relationship with prince was by far, the strongest human-animal bond she has experienced. she and her husband got him at a garage sale, and he was a very independent and quirky dog, both things they particularly loved about him. barbara describes prince as “larger than life” and has numerous stories about his offbeat, delightful and autonomous character. they did everything together and despite some health challenges, prince was a full and active member of the family. once barbara was diagnosed with cancer, prince became her constant companion. she explains that prince was extremely intuitive about her needs and that he would stand, sit, lie or walk close by her depending on what was best for her at the time. barbara feels he taught her about living in the present, and felt that the non-judgmental, non-verbal and attentive presence of her dog greatly contributed to keeping her calm and able to cope with her illness on both physiological and emotional levels. they nurtured each other and it was a deep and fulfilling connection although naturally she also worried about him. two years after barbara’s cancer treatment was complete and her health returned to normal, prince’s health was failing due to old age. she and b recognized that he was nearing the end of his life, and that they would need to put him down in dignity to avoid any more suffering or pain. barbara remembers that as difficult as this event was, she was completely committed to being by prince through it, because he had stood by her during her time of need with utter selflessness and devotion. barbara recalls in thinking about having to put prince down: “he went through that summer with me. i was not going to let him go through that alone. it didn’t matter how much it would bother me … i knew i had to do it.” such was the shared devotion of this beautiful pair. participant # : clair and her dogs zeus and zena background and brief cancer summary clair is a year-old woman, working as a business professional in vancouver, bc. she and her husband moved to the city in and soon after got their small dogs, zeus and zena, now years old. clair explains that she and her husband always knew they wanted two dogs and together they form her family. during the interview, clair lovingly referred to the dogs as her “fur babies”. clair’s cancer diagnosis was extremely stressful and drawn out, in particular because her symptoms were not immediately recognized as cancer. she pursued further diagnostic tests in part due to her own research efforts. finally after a year and a half, on july th, bastille day, her own self-referred revolution began when the cancer diagnosis was made. she had to wait again, for over a month for the comprehensive diagnosis and treatment plan. during this time, clair explains that she and her husband relied heavily on outings with their dogs to keep themselves busy and sufficiently distracted during this “hellish’ time. once she made the final decisions about treatment, which included major surgery and extensive radiation treatments, clair and her husband set about to care for the dogs and for herself throughout many challenges. this included both dogs being ill and needing care at the same time as she did. clair worked until the day before surgery, and took public transit to every treatment, refusing the bcca volunteer driver services as she “felt there were people who needed it more” than her. she walked the dogs daily for an hour throughout her radiation treatment except for once or twice when the rain was too heavy, something she felt proud of. pet history and relationships clair explained that she grew up with a dog, who was very much like a sibling to her as a child. in her teens her family got two small dogs, of the same breed as her current dogs zeus and zena. because she and her husband knew they wanted to include their dogs in all their life activities, they chose this small breed who could, for instance, sit in the airplane cabin with them when they flew to visit family. clair and her husband got zeus as a week-old puppy, and a few months later, adopted his cousin zena. zena was chosen because she had an adorable under bite that prohibited her from being a show dog, and more importantly, because zeus took an instant liking to her. while both she and her husband adore both dogs, clair acknowledges that she and zeus are more bonded. he is “her little guy.” she describes him as athletic but skittish, and an extremely “good cuddler.” she and her husband’s extended family all have bonded with the dogs and have unique relationships. clair expresses clearly that having the dogs throughout her cancer experience provided her with family, affection, companionship, emotional support and a reason to get through the hardship. she describes a real protectiveness over the dogs and during the interview, demonstrated how they could be held like a baby and rocked in her arms. her love for these non-human family members was apparent throughout the interview. during her treatment however, both dogs got ill and needed their own medical / veterinary care, causing much stress to both clair and her husband. in particular, the dog’s health problems caused a great deal of additional work and strain for her husband, something clair felt quite badly about. while these challenges added stress to an already stressful experience, clair, like every other good mother, continues to talk of her “fur babies” with love, devotion, awe and delight. participant # : mona and her cat gris background and brief cancer summary mona is a year-old woman, retired from the field of healthcare, and living with her cat in british columbia. she is an active volunteer and fitness enthusiast. when she was diagnosed with cancer, she had to slow down her activity considerably and this was quite a challenge. throughout her multiple treatment courses, mona describes a great deal of support from her community of friends and healthcare team, and in particular, from her deep relationship with her cat gris. pet history and relationships mona explains that she has had cats in her life since her childhood and that she feels a strong connection to the species. throughout her adult years, she kept cats at once, each living to over years of age. mona describes the pain she felt when her two previous cats passed away from cancer. she was heartbroken and thought, “i cannot go through this again”. however, in , mona felt she was ready to bring another cat into her life and began the difficult process of choosing a creature among the many needy cats at the spca and other shelters. these visits were hard for her. on a particular day however, she walked into a rescue place recommended to her, and she did so with “clear intention.” mona waited to see which cat would approach her. instantly, gris came to her and she noticed that a tear was running down his eye. the next day mona went back and followed her gut and adopted him. this fortuitous connection had an enormous impact on mona while she dealt with her cancer. she describes numerous profound moments of connection between herself and the cat: healing moments that helped her move through the illness and treatment with hope and grace. gris was very specific in his behavioural changes after mona was diagnosed with cancer. he modified the way he sat or lay with her, vocalized when he had never before, and after all her treatments, he carefully and purposefully went to the area of incision or port and gently licked or warmed the bandage or skin around. mona relates feeling a sense of authentic communication and trust with gris throughout this time, so much so that she concentrated on sending and receiving messages of love to and from him while she was in hospital. she states categorically “ he was present to me and what i was experiencing at that moment… i didn’t feel that he was ‘doing for’. he was with me on the journey.” participant # : ruth and her dog brownie background and brief cancer summary ruth is a -year-old woman who lives with her boyfriend and her dog, and works in vancouver. she was completely shocked and devastated when she discovered that she had cancer. as a young, healthy woman with no overt symptoms, ruth explains that it took a great deal of time to fully accept the diagnosis. she explained that it was also particularly difficult to deal with the reactions of family and friends who were also as shocked and upset as she was about the illness. one of the themes that ruth returned to during the interview was how reassuring and comforting it was that brownie did not see her any differently than prior to her diagnosis. she expressed much appreciation for the stability of the dog’s presence, his complete acceptance and absence of judgment in relation to anything about her. this stood out for her in her world where her family and friends were extremely supportive, however, understandably, also extremely concerned. pet history and relationships ruth explained that she grew up with a dog from the age of through years of age. years later, just after she began her university studies, ruth happened upon the opportunity of getting a puppy. a friend of hers had brought home a dog that she got while living abroad, and the dog unexpectedly had a litter of puppies soon thereafter. ruth decided it was a good time to get a puppy, as she believed she had more time and that her schedule was relatively flexible. she brought home the -week-old pup and has had him for seven years now. puppy brownie was a handful however, and she and her roommate at the time worked hard to train and take care of him. ruth describes the process as labour intensive but also extremely rewarding and well worth the companionship brownie immediately brought to her life. brownie was both a buddy and a bit of a nuisance while ruth faced cancer. he was by her side at home so she rarely felt alone. ruth pushed through six rounds of chemotherapy and pushed herself to walk brownie and keep as active as possible throughout. at times, however, it was physically a great strain to get out and walk him. despite this hardship, ruth expressed a clear awareness that it would have been much harder to cope with the cancer without her “buddy” brownie. she remembered back to when he was a handful as a puppy and she wondered whether or not to keep him. now she recognizes how much he helped her and is so very glad that she did. participant # : maria and her dog cookie background and brief cancer summary maria is a year-old woman, who works as a bank advisor and lives with her husband and dog in british columbia. she describes herself as blessed to be surrounded by immeasurable love and support, but also has faced considerable hardship due to health problems in some of her family members. once maria discovered a lump in her own breast, it took an unfortunate protracted period of time until she was finally diagnosed with cancer. while this process was devastatingly hard, maria decided that, true to her character, she would face the illness not as a victim, but that she would take control and fight it. and she did not fight alone. maria expressed enormous gratitude for the many sources of support in her world while she fought and conquered the illness. she calls the group of doctors, healthcare professionals, family members, friends, pet- related business people and neighbours her “dream team.” naturally cookie was among one of the main players (if not the mvp). pet history and relationships maria explains that both she and her husband grew up with dogs and that they knew they both wanted one once they were living together. unbeknownst to her, maria’s husband (l) was quickly falling for a little puppy at a nearby pet store. l was visiting the pup daily but hadn’t mentioned anything to his wife, as initially they had planned to adopt a rescue dog. just around valentine’s day, l brought maria to the store to see if the puppy was what she wanted for a valentine’s gift. maria was smitten. cookie was smitten, and of course so was l. they took the puppy home and cookie quickly became their baby and “mr. personality”, “happy” and “handsome prince” to the whole community. maria smiles widely as she explains that cookie is a little bit spoilt, slightly pudgy and able to outsmart any pet professionals who have been hired to curb some of her quirky behaviours. in part, these quirky behaviours are what make cookie so unique and delightful. throughout maria’s cancer experience and treatment, her “baby cookie” was there to cuddle, comfort, protect and provide endless unconditional love. this did not go unnoticed by maria’s community. she describes an outpouring of support for helping out with the dog. friends and family walked and looked after cookie whenever needed, and the doggy day care and grooming store provided unlimited free services. maria explains that cookie’s role in helping her through her cancer was taken very seriously. now that maria’s health is strong and stable, she continues to express gratitude and love for the amazing support from cookie and the dream team, and how the “stars aligned” to help her through a grueling experience. participant # : lucky and her dog sugar background and brief cancer summary lucky is a year-old woman living in british columbia with her dog sugar. lucky has worked as a professional in the healthcare field for many years, and unfortunately began experiencing debilitating dermatological symptoms in . she lived with pain, inflammation and discoloration, all of which found no successful explanation or treatment. lucky describes the upset caused by regular unsolicited advice from strangers out in public who judged her and stated out loud that she should use sunscreen, assuming she had a sunburn. these kinds of experiences, combined with the constant, untreated pain from her condition made for a very difficult years. in addition, during this time her dog of years, “j” passed away, leaving her with much loneliness. in a firm diagnosis of lucky’s condition was finally made. it was actually a relief for her and her community of friends and family to find out that she had cancer. this made the possibility of treatment and symptom management for her awful symptoms possible as well as giving an explanation for the past years of difficulty. lucky has had some very successful treatments and continues to undergo treatment to combat her illness. she faces her challenges with a feisty attitude. pet history and relationships the day she received her cancer diagnosis, lucky went online to look for a dog. she chose sugar, an adorable small dog with a “sad, forlorn and scared” look. something about his face clicked instantly for lucky, and sugar was home with her within a week’s time. sugar had several quirky and challenging qualities, but was simply impossible not to love. before sugar, lucky had j for years, and part of that time, her mother helped her with the dog’s care as he aged because lucky’s condition impeded her mobility at times. losing j had been a very painful loss. bringing sugar into lucky’s life brought the idea of companionship, exercise and affection back into her world. at first, both she and some family members felt nervous that lucky would be able to look after the dog given her limitations and pain. once the family met sugar, however, they fell head over heels with the dog and all contributed to her care. sugar got all the care and attention she needed, and turned out to be a significant part of lucky’s healing experiences. it took a long period of time for her pain to be managed completely, and until that happened, she explained that even though she was in the same amount of pain as before, having to walk and care for sugar gave her newfound motivation. lucky considered the cuddling to be therapy as well. since she adopted sugar, her “perfect dog”, lucky and her have pretty well been together “ / ” and she states that the timing could not have been better. participant # : sarah and her dogs ganesh and lakshmi background and brief cancer summary sarah is a year-old professional working and living in british columbia with her husband “d” and two dogs. they have one adult son. in , sarah began a long battle with breast cancer and its treatment that brought many challenges to her already busy life. at the time she was living in another province due to employment needs, and the illness and treatment took its toll on every member of the family including the dogs. sarah explains that everything that possibly could have gone wrong with her treatment, her employment, her living situation and her emotional health did go wrong. the move from b.c. put the family in financial and emotional turmoil. on top of this, the process of having cancer was arduous and debilitating and it overwhelmed sarah, her husband and their son. pet history and relationships sarah explains that she has had dogs since her earliest childhood and that animals have been and continue to be an essential part of both her and d’s lives. sarah related many stories where dogs and other creatures have had a profound effect on her. they have been her friends, her healers and her companions no matter where has lived or moved to or from. she and her d treat their dogs as they would their children, and as such, experienced a painful loss when their beloved rescue dog, “n” died in after suffering for a long time with a congenital deformity. the family did everything they possibly could to care for this dog and it was very difficult to even conceive of getting another one after n passed away. a year later, when a family friend happened upon some newborn puppies, sarah and her son went each to choose one. it took some softening before sarah’s husband felt open to having another dog, but when d laid eyes upon ganesh, he melted and ganesh was the new love of the family. six years later, the same family friend asked if sarah could housesit another newborn puppy until a home was found for her. not surprisingly, lakshmi, the new pup found her home instantly with sarah and d. sarah has believed that lakshmi carries in her some of n’s spirit, the dog they lost years before. she felt that lakshmi was her “saviour” while she was out of b.c., as the dog protected and looked after her, kept her calm, forced her to go out, and enabled her to meet people in a place where she knew no one. throughout her experience with cancer, both ganesh and lakshmi stand out as pivotal components of her ability to cope and heal. they sat with her when she cried, and stood by her with a loyalty and protectiveness that she truly needed. once back in b.c., sarah continued to face multiple challenges associated with her illness and treatment. she recounts a time where the dogs literally saved her life after a fall. they nudged her, nipped at her feet to encourage her to get up and barked repeatedly until someone on the phone heard them and rushed home to help. sarah feels strongly that both dogs understand and relate to her with a deep emotional connection. they all live, eat and coexist together as a family. this was quite visible during the interview, where they stayed by her side and nuzzled her continuously. many unjust things occurred to sarah during her terrible experience with cancer, however, her dogs remained devoted and true. defining wellbeing in the context of cancer the construct of wellbeing is central to the research question and is, by its nature, subjective. in order to capture the context for each of the participants’ helping or hindering incidents, participants were asked to describe their personal definitions of wellbeing before they were asked about experiences that contributed to or detracted from it. each was asked the question “in the context of your cancer experience, what does wellbeing mean to you?” it is significant that five participants had difficulty responding to this question, one stating categorically “when i had cancer i didn’t have wellbeing on any level honestly… everything that i think about wellbeing physically or emotionally or whatever, when i had cancer, it just wasn’t there.” another participant could not find any ways to conceive of wellbeing during her cancer experience. several participants did not answer the question directly at the time it was asked and only later, nearer to the end of the interview, added comments that elucidated their definitions of wellbeing in the context of having cancer. while numerous theoretical approaches have attempted to define wellbeing, as discussed in chapter , it is generally agreed upon that individuals experience the presence or absence of wellbeing in personal ways that have meaning to them. despite the challenges in arriving at a universal definition, perhaps the definition that is most applicable to this study is found in lent ( ). as discussed in chapter , lent focuses on people’s abilities to both locate and develop personal and social resources and adaptive behaviours in the midst of distressing life circumstances thereby achieving wellbeing. wellbeing categories the process of category development as outlined by ecit was used to develop the definitions of participants’ subjective experience of wellbeing. descriptors of wellbeing from of ( %) participants emerged from the interviews. these items were collated and analyzed repeatedly until salient categories of wellbeing became evident. in rank order of participant endorsement, these categories are now presented and described with supporting verbatim quotes: . peace of mind . social support . taking care of my emotional needs . resolving to beat cancer . putting my physical needs first . personal growth . peace of mind this category refers to reported elements that include a sense of calm, peace, acceptance and balance. descriptions provided by participants included: living in the moment; not stressing about getting things done; feeling that someone is watching over them; and a sense of perspective and wholeness in regards to themselves in the context of who they are, with or without cancer. by nature, this was often experienced as a satisfying connection to self and a sense they were doing everything they possibly could to be true to themselves, i.e. no regrets. supporting participant quotes when the sun is out i feel a sense of wellbeing; when i am with friends i feel a sense of wellbeing; so it isn’t necessarily just a health thing, it’s more a state of mind or a sense of an inner peace or something in yourself. when i feel centred and grounded within myself, therefore i am more in present time; when i was in present time there was no fear and i was able to experience joy. if cancer is going to take me i’ll feel that i have done everything possible for my own health and wellbeing. feeling like someone is watching over me; some higher power. the best thing is just to see sort of a balanced scale and if they tip one way you’re out of balance and your wellness goes down or wellness goes up depending on it. the feeling that everything is as it should be. . social support the elements in this category related to having supportive people around including family, friends and co-workers. participants also mentioned the term love regularly, indicating that the giving and receiving of love were salient factors. supporting participant quotes having a family member who is supportive and caring, the person who says to you -its gonna be okay, were gonna work through this. being surrounded by people who love and care about you. family and friends that were supportive; family and friends staying positive made it easier. . taking care of my emotional needs this category refers to emotional concerns and needs, affect, maintaining normalcy and the importance of not focusing exclusively on cancer. this included the ability to experience joy, happiness and humour, as well as tending to emotional needs such as keeping a good body image, avoiding stress and feeling capable of coping with sadness and fear. the ability to focus on aspects of their lives other than cancer was endorsed by many as part of emotional wellbeing. participants valued the sense that at least some of the time, they could maintain normalcy despite the many changes brought on by cancer. in particular, they also reported the importance of getting information about diagnosis and treatment from their health care teams in a timely manner so that they could manage their emotions. supporting participant quotes. feeling that lightness even though there is a lot of heaviness going on in the background. humor, not taking cancer too seriously. keeping cancer in a frame of mind that was handleable -“ok i’m doing this and going through treatment; i’m doing this thing that’s hopefully going to make me better. the main thing was to make sure that i didn’t have to deal with work or complicated situations. trying not to feel like a cancer patient all the time. . resolving to beat cancer this category includes the numerous references made to participant’s resolve to “beat this disease”, remain optimistic about overcoming it, and/or do everything possible to face cancer and its treatment with feistiness, strength and conviction. supporting participant quotes a kind of resolve that this is how you’re going to tackle it. it’s remaining positive and that you’re going to beat this disease . putting my physical needs first this category refers to the physiological aspects of participant’s lives including health, pain management, nutrition, and exercise. this area was often accompanied by the assertion that putting oneself and one’s health first when facing cancer was part of wellbeing at this particular time in their lives. supporting participant quotes focusing on my health and wellbeing everyday; focusing on myself every day. being careful and cautious about my immune system, i.e. don’t go to crowded places, don’t let people kiss or hug me, hand sanitizer, never open doors with my hands. it takes into the whole of my life so that would be physically, so it would be decreased pain. i had to make cancer my full-time job. . personal growth & purpose this category comprises elements of participants’ foci beyond merely surviving the illness. this included the possibility of personal development and the hope that something could be learned or gained from having cancer. supporting participant quotes when you’re looking at cancer if you only look at it from one perspective, it becomes all evil and you forget about the journey, you forget that it can take you towards thriving not just surviving. if i’m gonna have this stupid thing (cancer), this evil thing then i better learn something from it, i better gain something from it. i want to better myself and become something that i can share with somebody else. critical incidents and categories thirteen categories were developed from the critical incidents and wish lists described by the participants. a total of items reported by the participants emerged from the data, comprised of helping incidents (he), hindering incidents (hi), and wish list (wl) items. the categories were finalized based on the data analysis, member checks and validation checks consistent with ecit. some categories contain he, hi and wl items while others contain only he incidents. the wl items are noticeably fewer in number as many of the participants struggled to think of something they ‘wished’ they would have had during cancer specifically in reference to their pets. they did have many ideas of general things they would have liked help with during their cancer experience, and this finding will be considered in chapter v. i have attempted to label each category to most accurately reflect the nature of the critical incidents allocated to it. the categories are presented in order of highest to lowest participation rates, the first categories being endorsed by all participants. the following section provides participation rates for incidents within each category (table ) followed by a description of each category with representative verbatim quotes from participants. in rank order, the categories are: . companionship & presence . emotional & social support . purpose and role . how pets are different from people . health and pain management . pet intuition and adaptability . being positive and in the moment . pet as protector and caregiver . touch . unconditional love & devotion . existential and spiritual factors . family members and finances . caretaking of sick / dying pet table participation rates for categories, critical incidents & wish list items categories helping incidents (he) (n= ) hindering incidents (hi) (n= ) wish list items (n= ) # of part (n= ) pa rate % # of he incidents # of part (n= ) pa rate % # of hi incidents # of part (n= ) pa rate % # of items companionship & presence emotional & social support my purpose & role how pets are different from people health & pain management pet intuition & adaptability being positive & in the moment pet as protector & caregiver touch unconditional love & devotion existential & spiritual factors family members & finances caretaking of sick or dying pet part = participant, pa = participation . companionship & presence this is one of three categories that were endorsed by all participants ( % participation rate) and included incidents in total. it was notable early on in the interview process that almost all participants repeated a version of the following phrase multiple times throughout the discussion in reference to their pet: “s/he was just always there”. helping aspects: the basic presence of the pet was a central theme that participants returned to throughout the interviews. this involved the sense that the pet’s presence, companionship and constant ‘being there’ provided comfort and security. the great majority of the time, this presence was experienced in a very positive and reassuring way, decreasing loneliness for participants while they were at home for cancer-related reasons such as treatment, pain, time off work, etc. participants expressed a sense that their pet would be there physically and emotionally, at all times, no matter what state they were in, what they were doing or what they needed or how they behaved. illustrative participant quotes he (dog) was with me with my illness, there was no judgment there was no anything - it was just the ability to just be there and not have to do anything. being present…without expectations. it’s so huge because life expects a lot out of us and when you’ve got cancer its just another thing that’s expecting something out of me – i’ve got to go to appointment after appointment, the emotional impact of it, the physical impact, the psychological, there’s so much expectation there that you need one thing that has no expectations about it. and that’s with being with an animal…it’s just having them be there for you. it’s an anchor. its somewhere you can go, as crappy as you feel, you can at least go and sit down beside him. he’s the constant. everybody else is coming and going but he’s always there, always there. if you need him to go for a walk, if you need to sit with him, he’s there. he’s there. it’s just nice knowing that they were always there. you know, no matter what, if i, you know come home, and all i could was cuddle with him, and that was fine. i didn’t feel that he was doing ‘for’. i didn’t have this doing. he was, he was with me, on the journey. that’s all that i can say really. he just never left me alone - like my little shadow - wherever i would go he would follow. hindering aspects: in terms of unhelpful aspects to the pet’s presence, two hindering incidents were mentioned in this category, one each by two participants. they reported that very occasionally their pet’s constant presence felt somewhat stifling, thereby causing irritation and stress. both participants reiterated that this was rare and that the majority of the time, they were comforted by their pet’s close presence. wish list: wl items regarding companionship included the desire for pets to be allowed to visit them while they were in the hospital and/or be able to stay over with them in the hospital when participants were admitted overnight. similarly, participants would have like to be able to take their pets to public places with them. . emotional and social support this category also had % participation rate and featured he incidents, hi incidents and wish list items. the category encompasses the diverse emotional and social effects that participants described regarding having a pet while they had cancer. helping aspects: this included a sense of emotional support, acceptance, reassurance and calming qualities provided by the pet. it also refers to the increased and/or facilitation of socializing with other people due to having the pet. this occurred in instances such as conversing with both neighbours and strangers who shared an interest in the dogs, cats or horses. these interactions were described as of particular significance because they were often the more rare conversations that did not revolve around the subject of cancer. illustrative participant quotes you feel accepted, you feel that warmth and affection. he gives you that warmth and affection that you really need because you’re feeling really sorry for yourself. so at that point when i was in vulnerable spots, whether it was when i was diagnosed, when i was post-surgery …or when you’re going through pain it was a good thing that he was able to then give you that support. it (the dog) is one way of- interacting with people on a non-sick level because they don’t know that i have anything wrong and its kind of refreshing to be a person rather than a cancer victim which i just really abhor that. when i came back, i had to go to the bc cancer agency. i used to sit down on those stairs. i would just cry and g (dog) would sit back, one step higher than me and put his head on my shoulder and then he would lick my tears. i’m telling you nobody could have healed my like that dog did. especially those nights where you’d wake up scared or a little fearful and you have anxiety- they’d (doctors) given me a prescription for anxiety and i’d keep saying that i didn’t need to. i slept with them (dogs) on the floor because i just couldn’t move. so there’s one side me and one side the dogs. the three of us totally like children in fetal positions. three of us. many times when i feel like really crying, they go the places where i go cry. they both will sit there. i am so glad they were sent to me. hindering aspects: on the hindering side, participants reported feelings of guilt, stress and worry regarding their pet’s care and the effects of their illness on the pet. they described the sense that the limitations put on them due to their illness were decreasing the quality of life of their pet. illustrative participant quotes only emotionally.. it was quite a bit of stress after my parents went home of actually getting him walked…. that was a stress because i’m here all day with him (the dog), and i’m concerned about him getting walked, getting outside, and i physically can’t do it, and really we had very few friends and family in the area that could or would do it…i’m not really one to ask for help, so you almost had to rely on people thinking to come help… my sister used to come on certain days and it was a big relief when she would, but there are a lot of days when you don’t hear from anyone, so that was my stress. the first part when you get diagnosed is you don’t want to leave. you think about, “oh my god, i’m going to die and what’s going to happen to this dog?... how can i leave him? if i wasn’t feeling that great, like, it was hard to take the dog out…like definitely guilt would kick in and start to feel like, ugh…i’m sorry! it was terrible for me, because i think i was more worried about him (dog) than myself then. i just didn’t want him to feel that something was so horrible wrong with me, that he was going to be losing me or something. wish list: participants reported wishing that there were professional home care staff that was pet-friendly, as it was distressing to have to put their dog in a separate room when health care professionals came to the home after surgery. one participant would have liked her breast cancer support group to be centred on pets part of the time. . purpose and role this third and final category endorsed by all participants involves helping incidents and hindering incidents. participants described feeling that their pets provided them with a sense of purpose or clearly defined role that was for the most part beneficial and salutary. helping aspects: the pets seemed to call upon a nurturing aspect of participant’s beings that felt purposeful, healthy and normalizing. participants expressed enjoying the sense that they could still provide for someone or something else other than themselves. they also talked about the sense of purpose provided by pet caretaking, in particular increased motivation to walk or go outside. several participants who had no children or whose children were grown and out of the house referred to their pets as their children, ‘fur babies’, family members and babies. this nurturing role was quite significant for many participants. illustrative participant quotes i did feel very useless while recovering cause i’m not a person to lay around…so that was one thing i could do when a (husband) would walk him in the morning, i would get up and get his food ready. so i got a little small piece of feeling – of purpose early on. in the start of the day when i could actually help- that was probably the initially thing that made you feel that you’re moving forward.” if i didn’t have l (dog) would i have gone out walking, or would i have sat here feeling sorry for myself watching tv or reading probably. he (dog) made me go out and he made me do things, he made me care for something other than myself. you get sick of yourself actually. i thought i need something joyful and something fresh and something non-cancer that will absorb me. i did this (adopted the dog) absolutely coldly knowing that i would love the dog…so i used that dog for my purposes and i didn’t feel at all guilty, cause i knew that if i was coming back as a dog i’d want to come back as my dog. i always just, i mean before we knew how bad it was going to be i always just thought that i had to stay around for them. he made me want to get up even if it was a quick walk around the block, it gave me a reason, minutes, minutes, minutes- whatever i could manage but he gave me a reason to do it. three of us (participant and dogs) eat lunch together. lunch is early like fruit salad or something- so i take bites, they take bites. they take bites, the three of us. we are like a family. they’re my children. hindering aspects: for two participants however, the pet’s presence at times was a reminder of their own incapacitation and illness, thereby contributing to a sense of failure or inability to fulfill purpose. illustrative participant quotes i did feel very useless while recovering ‘cause i’m not a person to lay around and i said that many times, that i’m useless and this and that- and that’s a specific thing for him (dog), because he’s on the raw diet you can’t leave his food out. wish list: there were no wish list items in this category. . how pets are different from people this category encompasses various ways in which participants described qualities or aspects of their pet in a comparative way to human beings. % ( ) of participants endorsed this category citing he incidents, no hi incidents and wl item. at times, pets were directly compared to family members, friends and various other people in their lives, and at other times, comments seemed to refer more to a general comparison of the two species; i.e. “they (pets) just don’t judge you like people do”. to clarify, all participants talked about the support that was provided to them by family members, friends, healthcare professionals and even strangers with great appreciation. for many, however, there was also a sense that their pets were able to provide a type of support they couldn’t get from the people in their lives. helping aspects: pets were described with characteristics believed to be unattainable by human beings, i.e.: complete selflessness, lack of judgment, and unending unconditional love and presence. sometimes these qualities were attributed to the non-verbal quality of pet communication. mostly, participants described a felt sense of trust toward their pets that existed without frustration to human beings but rather with an acknowledgement that the two species simply functioned differently in the ways in which they relate to others. illustrative participant quotes if it were a kid they’d be bouncing they would want something from you.. they wouldn’t be close and quiet, that doesn’t happen with a human being right- they’re there for a reason- they want the interaction and its usually about the other person, it’s not about you.. whereas with the dog, the reason was me. i guess it’s no matter how close you are to your friends or your husband or whatever i think maybe it’s the non-judgmental aspect of a pet. it doesn’t matter who they are. even if they’re your closest friend, things that you tell them or things that they see, you always know that they’re going to judge you in some way… that’s just the way we all are, right? …. whereas dogs just aren’t. they’re just there. they don’t stare at you and go, “oh you look funny now.” …no change, because you’re just you. you’re always just you and that’s all they care about. that’s all they care about. they don’t care about looks or even if you don’t feel good or what’s wrong. they’re so easy…and they’re just so calming that way i guess. the dogs, they don’t judge so it doesn’t matter, they don’t care that i don’t have breasts anymore. if i’m on the floor crying, they don’t care they’ll just, they’ll come over for a kiss and a cuddle and it doesn’t, it really makes no difference to them. and they don’t think that i’m taking too long to get back to work or that i’m, you know not healing fast enough or doing really well or whatever. they just don’t judge that way. it was a true- an authentic healing experience, because he didn’t say a word, he didn’t ask anything of me, i wasn’t a number, you know chart number, and he wasn’t giving me suggestions on how i could get better, he was just in the moment doing what he felt i needed. i just remember being so thankful that he was there and not like wanting to talk about it, or like ask questions, you know… and not shocked about anything, like you know when my boyfriend … would take me to chemo treatments and stuff and sometimes when i came home like he wasn’t being mean or anything, but he was just like “do you want to go lie down, like you look kind of look like a wax figurine”, like i guess just the way you look after, you don’t look normal. but b (dog) was just like, treat me the same, you know, nothing’s different. i mean sure i had support and love from my friends and family but i don’t know- it’s different, it’s a different kind of companionship…. it’s a different way of communicating. hindering aspects: no hindering incidents were reported for this category. wish list: one participant stated strongly that she believed that everyone should have a dog when they’re sick, even more so than having people around. . health and pain management this category refers to areas in which having a pet while having cancer either contributed or detracted from health, healthy behaviours, and pain management. participants ( %) reported a combination of he incidents, hi incidents and wl items. helping aspects: pets were often associated with increased healthy activities such as walking, exercise and going out of the house. participants reported that without their pets they likely would have engaged in far fewer healthy behaviours outside of those directly involved with cancer and its treatment and side effects. pets were also perceived as assisting with pain management through distraction, cuddling, or being held tightly until pain decreased. participants described at times dramatic instances where their pets behaved in completely selfless ways in order that their actions might help decrease the person’s pain. these participants described being “amazed” and “stunned” by these actions. illustrative participant quotes one thing that i really felt when, after surgery, and i was in a fair amount of pain, like, even though i was on pain killers in the night, it would really almost feel like knots in my leg, and what i found was that j, like ‘cause the pain killers wouldn’t last through the night, i’d have to wait, take a pill and while i’d wait for them to kick in….i can grab him like almost how people grab a stress ball, and he will let me like just grab his leg and hold on to it…. he would just let you do it. well certainly during the radiation…and about a month post-surgery i started walking them, so it always gave me something to do and i usually feel better after a walk so, i think if they hadn’t been around it would have been hard to force myself to go...we went for a walk every day. she (dog) was my saviour in that city because i had to walk her, i had to feed her, i had to play with her and as a result, i was forced to come home on time. i was forced to exercise. hindering aspects: personal health concerns related to pets were also noted by participants, in particular the added strain of daily caretaking duties such as walking and feeding the pet when one felt exhausted, weak, incapacitated or sore. illustrative participant quotes the fact of the matter is that he needs food. he needs to be walked, so if there’s nobody to do it then i’d have to do it. even if i did feel weak, it was like any job that you have to do… there was the worry. the worry about fights or m’s (dog’s) health and the worry that if she’s in the house too long she might have an accident. and i couldn’t clean it up… i don’t recall ever cleaning it up when i was sick. i was worried about the house and my health. wish list- several participants felt that there should be pet care help available for people with cancer and their caregivers in order that they could continue to enjoy the health benefits of their pets without having to take care of the more difficult or exhausting care elements. . pet intuition and adaptability this category represents examples ( he and hi) provided by ( %) participants where they believed and felt strongly that their pet was able to both pick up on their feelings and needs as well as respond to them. two participants described hindering incidents in this regard. helping aspects: participants described multiple experiences where they felt their pet had an “esp” type of connection with them. this connection included both emotional and practical components. these included a strong feeling that the pet was ‘in tune’ with them and that they understood their situation on a non-verbal level. there was a sense of complete conviction that the dog or cat was watching the participant more carefully than before they were ill, and as such, modifying their behaviours to be more helpful to them. adaptations to participants’ illnesses included increased gentleness and tenderness from normally very active and demanding dogs, dogs requiring fewer and shorter walks, and observable changes in cat and dog behaviour suggesting they knew something was wrong with their human companion. participants described their pets being particularly careful and gentle around medical equipment as well as around any parts of their bodies that had been treated or had illness. in many cases, the pets altered their activities immediately after diagnosis to better suit the needs of the person. participants often described these changes as amazing and mystifying, proving conclusively to them that their pets knew, understood and cared for them deeply. illustrative participant quotes i’m still amazed how much he seems to almost understand what you’re going through. even with this leg with the drains and stuff before i had surgery he’d often lay right on my legs in bed, he would lay across them. after surgery, he couldn’t and i’m sure the first time i said no but then he never seemed to try again… i used to walk him three times a day- long walks. and he suddenly had to change to being walked later in the morning and later at night and he never bugged me about it. post-surgery…so you’ve got this machine, you can’t move really cause you’re hooked up to it, you’re in an excruciating amount of pain. and he (dog) would come and know – i didn’t want anybody touching me- its like he knew- he would come up and put his backside close enough to you but just far enough away. seems like had an intuitiveness about him that said “i know you’re in pain, i’m gonna be here but i’m gonna be far enough away that i don’t hurt you. i could only sleep on my right hand cause it was my left breast...so he couldn’t come up and sleep next to me so what he did was he curled up next to the pillow and got his head around this area on my right arm, he put his head right there on the right… and then he put his left paw in my hand…then he’d start nodding off and this his paw would move and he’d put it back on. he was very conscientiously putting it there… he’s never done things to that extent you know, before or after. it was really interesting he knew when after surgery- he kinda knew when i had limited mobility so he never came near the bandages- he knew that was off limits. he’s a real lap dog but he wouldn’t- he knew i was hurting there. and even when we walked- i never taught him to walk well on a leash- but he would not pull the least or anything, very calm, which he is not a calm dog. he picked up on things and really just wanted to be a support. when i’m not feeling well he notices it and he’ll either lie with me the whole time or he’ll go and do his own thing and check in on me. – there were a few times that i wasn’t able to take him for a walk and he pretty much took care of himself in the house. he’d run around and scoot around and get his own exercise – so if he needs to go for a walk and he sees that i haven’t gotten up, he’ll go take care of himself. hindering aspects: one participant also sensed that their pet was negatively impacted by the illness and described this sense as upsetting and troubling. this included a feeling that the pet was distressed, worried and fearful about their human companion’s condition, which in turn distressed the person. there was also a sense of guilt at times that the pets were so selfless and undemanding that they might not be getting their needs met (i.e., dogs being walked less). illustrative participant quotes he (dog) is like a baby and he goes wherever we go. i think he sensed there was something wrong. he was quite distressed, he started shedding, he got dandruff in his hair – and i felt really, really sorry for him. it was so bad that you could hear him cry at night. he would sit next to the bed and if he heard me moan a bit, i could hear him cry. we didn’t want to distress him so much. every time i had to go to chemo or any physio we had to put him in a kennel. he hated that, because they had never been to a kennel before. wish list: there were no wish list items in this category. . being positive and in the moment this category incorporates examples cited by % ( ) participants whereby their pet brought a sense of positive energy, joy, grounding and a ‘here and now’ focus to their lives during their difficult cancer experience. cats, dogs and horses provided opportunities for participants to get participant’s mind off their illness and remain in the moment. this was also particularly felt during the hellish time that participants described while waiting for news of their diagnosis as well as treatment or test results. there were no hindering incidents or wish list items reported by participants for this category. illustrative participant quotes how can you not look at your dog and smile? how can you not?! they really do teach you. they teach you about the now. while you’re sitting there going, “when i get through treatment, am i going to live? what am i going to do? what’s going to happen? has it come out? you can get pulled back just sitting with your dog. just getting back to, “you know what, let’s just sit her today and enjoy the day. “let’s go sit in our little backyard and let’s just…that’s the biggest lesson you learn. he (dog) was present to what i was experiencing at that moment, whatever moment that may be, he responded. that’s the biggest lesson i think anybody learns going through this (cancer). i think if you have a dog, they’re able to pull you back because they’re just happy now. have a look at them. that’s what they do... you know you’re going through the most frightening situation, and it can just come across you. and having a pet, in particular, g, i found it was very grounding. just like having another… something else alive that you care about, to just sort of interact with, i felt like that helped me stay positive. . pet as protector and caregiver this category was endorsed by % of participants and was formed by helping incidents. during the interviews, participants often referred to their pets as nurses (i.e. “my furry nursemaid), physiotherapists, and healers and as providing the ‘best therapy’ they could have had. in particular the presence of their dog was experienced by participants as greatly contributing to a sense of safety described by such commonly used phrases as on duty, keeping watch and feeling protected. dog behaviours were also described within the realm of practical care giving services such as helping participants when they’ve fallen, waking them up for meals, work, or medication. participants seemed to be keenly aware that their cancer experience would have been much more difficult without their companion animal. there were no hindering incidents or wish list items cited by participants for this category. illustrative participant quotes he really seemed to know when you’re not well and not expect a lot so he would lie there for hours until i think it was either someone came in or he needed to go out or something like that but then he’d come back up and it was like he was keeping watch. he was keeping watch to make sure that i was okay. there was quite a protective thing going on… because if the kids would come and wrassle or anything like that he would be right there and very protective that way… he would start to bark if there was too much rough housing. he was very much the protector. and the sound of that dog- i always felt i didn’t need a burglar alarm. with my first treatment i came home and i sat down and had my arm like this (out on chair arm) and he (cat) came along immediately to smell my hand- there was a bandage there- and then the second time i had it i was on the bed- my arm just resting by me and he came along and he started licking the spot, and they (the nurses) would switch veins you know- from here to there- (indicating alternating spots on her hand) and so then i watched him and then the third time and every other time whenever i came home he would immediately go to my hand, nowhere else, immediately go to my hand and then he would lick from that spot, even if it had a bandage over it- but from that spot up to my wrist . and then the next two weeks after that he would go over here, he wasn’t just generally licking he was very specific. he would almost corral me and ...then almost herd me to the back to the bedroom- very protective. my bed was very high and she was so tiny and she would stand up and her head was looking up and she will do this to me (gentle nudging movement) “wake up, wake up- you have to get up”. many times i think they feel if i don’t get up there’s something really wrong with me, they are trying to protect. . touch this category refers to the effects of physical contact, touch and petting of dogs or cats for participants. participants ( %) described a combination of he incidents and hi incidents. helping aspects: the sense of touch with pets was experienced as comforting and soothing for most participants, in particular the warmth, softness and affection that flowed so easily from companion animals. the act of petting or touching their pets was also experienced as calming, pleasurable, and soothing. illustrative participant quotes and then there’s that other part, that warm feeling where he comes in, puts his head on my lap, puts his head on the couch, puts his paw up and you just touch that beautiful warm silky fur and that beautiful handsome expressive face… just to sit with him and just pet him…dogs are very calming. if you can pet your dog and with your dog you kind of just.. .things just straighten out a little bit. you could sit with him and touch him and lay with him. it just kind of gets you calmed down and back level again. it’s the physical touch...it’s being close to them. it’s the warmth, it’s the petting. i find that in the mornings i’ll get up and hold him like this (holding like a baby)- and just cuddling him he’ll put his both paws on my arms and on my hands. being lonely on my own with this and not having somebody significant in my life- i think this makes up for it. well, he’s so soft… and i know my mom used to do that to me when i was little, she would always go like this with my hair (slowly runs her fingers through dog’s fur) and so i do that to him. hindering aspects: at times, this physical contact was also experienced by some as “too much” and therefore unpleasant or stressful. participants felt they needed some distance from their pets and separated themselves from them for periods of time. this did induce some guilt in themselves however, participants reported that they sensed their pets understood and/or were not perturbed by this. wish list: there were no wish list items in this category. . unconditional love and devotion all participants at some point mentioned and described the term ‘unconditional love’ in reference to their companion animals. % of participants ( ) clearly described how this love impacted their cancer experience in helpful ways. they felt that their pets provided unconditional love on a constant basis that offered healing, reassurance and purpose. a sense of intense devotion was described both toward the pet by the person as well as toward the person by the companion animal. these poignant incidents were described in general with tenderness, awe and a sense of good fortune. there were no hindering incidents or wish list items reported by participants for this category. illustrative participant quotes i just really like having their presence with me cause they’re quiet and you know how dogs just love you intensely, and you can just feel it, they do… and your dog just puts his head on your lap and looks at you and its just so comforting to have that loving presence there with you. you know that this dog will never do anything to hurt you. all he wants is to love you, that’s all he wants. give him some food, give him some water, give him a walk…but he just wants you to love him so you automatically feel that outpouring of love without thinking about yourself. i just think the love that surrounds him, this aura around him, this feeling around him is healing to me. i would always be sending him love (during treatment) from my heart and in my thoughts, i would always be sending him love. and i think sending that love… also helped the healing process. . existential and spiritual factors this category represents aspects of the participant – pet relationship that transcended the practical or corporeal. % of participants reported a combination of he incidents, hi incidents and no wish list items for this area. participants described feeling deeply and non- verbally connected to their pets in ways that brought spiritual healing, life meaning and a sense that this dog or cat was brought into their lives for a particular reason to stand by them in a time of suffering. concerns and explorations around mortality were experienced for some as meaningful and important. for others these concerns were a source of worry, in particular fearing what would happen to the pet if the participant died as well as fearing how they themselves would cope if their pet died. illustrative participant quotes that would be nice if i met b on the other side.. that would be nice… i feel that society has got to realize that for many of us that’s our family, that is the family you have, really it is. i had times when i’m just so low and i think that if i didn’t have this little creature leaning on me next to the couch i don’t think i could go on at times. i’m so down at times and feel so fragile, and there’s no one i can talk to at all, that is people have backed off- i do know that i probably couldn’t go on. i would be considering doing away with myself… but when you have pets- regardless of what happens there’s somebody i have to look after… what i found, that with g (cat) supporting me i was able to be within myself and have my soul, really be in touch with my soul. and heal from inside out in that way. i was hospitalized for six days, i wasn’t with him (cat) for six days when i was having radiation, and quite frequently during the day, i would just give a silent hello to him and i received hellos back. i could feel his presence. i never believed in reincarnation before but she (current dog) is n - (prior dog that passed away). the way she is. she came back to help me. . family members and finances this category refers to instances where participants felt that the pet was impacting some of their family members, as well as their financial circumstances. these examples were reported by % of participants and had an equal number ( ) of helping and hindering incidents. helping aspects: several helping incidents were described whereby participants felt that their children or spouses got emotional support and a sense of usefulness or purpose from their pets. the shared love for the pet was also experienced as a relatively rare source of bonded focus outside the realm of cancer. illustrative participant quotes it was really good not only for my own kids but for the foster kids that we had because again f (dog) was a safe place and he would feel their angst or whatever and climb up on their laps and lick their face and give lots of nurturing where they would feel really out of sorts and nobody could really get to them- well he could get to them. i think t (dog) was a real help to m, my eldest (dtr) because she told me later she was depressed that year – i didn’t know she was – she was fearful and depressed and i think t- i know he really helped her. he would be there with her, t and her- she was really fond of her horse too so she had that going, and they helped her. hindering aspects: participants reported additional financial and practical strains that were put on family members to provide care for pets, thereby adding stress to the individual’s and family member’s lives in a time of already heightened duress due to the participant’s illness. illustrative participant quotes her (the dog’s) pancreatitis is acting up so she’s on more medications and “i think she (dog) has fleas, look at this”. so my husband is like, oh my g-d, and i couldn’t do anything. like i had drains in, you know hematoma, so he spent the whole day in the bathroom washing the dogs and then the whole rest of the day doing laundry cause like they’re on the bed with us, they’re everywhere, all their beds, so he threw out all the bed, he went and bought new beds, he vacuumed, dusted, did the laundry- thank g-d we don’t have the carpet, but just everything, the entire house, he scrubbed the entire house. i look at the poor guy, he’s just like, “what next?”, what’s next? he’s like “dogs, can you please get it together? to walk him an hour is $ . …and that’s when i told my husband how much it was- he said ‘well i can hire someone to work the evening for that and i can be home and do it.’ so we did do that for a few weeks but it was quite expensive… but you don’t really want stress in your life either at this point but that was the only thing that really was hard. wish list: similarly to wishes from other categories, participants would have appreciated government funded dog walking and/or pet care services for sick people. . caretaking of sick or dying pet six out of participants endorsed the incidents in this category, the lowest participation rate of all the categories. this category was also unique in that it had more hindering ( ) than helpful ( ) incidents therein. participants reported these incidents, of which reported only he incidents, of which reported only hi incidents and who discussed both he and hi incidents. from the helping point of view, participants expressed that they found satisfaction in providing care to their needy pets. from a hindering point of view, the women felt just the opposite. the added stress of caretaking a sick pet when one is ill themselves proved to be overwhelming both emotionally and physically to several participants whose companion animals were ailing. helping aspects: participants felt that caring for their sick pet resulted in a sense of duty, purpose and feeling of being needed. the combination of being ill and caring for a sick companion animal sometimes also proved to be distressing, yet at no time did any participant mention that they wished they didn’t have the pet while they were ill. three of the participants experienced their dog’s death during their own experience with cancer. this was devastating to all of them but in very different ways. the first two women experienced their pet’s deaths in more positive ways, one even as a peaceful goodbye where she was deeply saddened but also amazed at her dog’s continued selflessness in his last moments of life. even when he died, when he was on his last breath, when i came home from work- we knew it was coming he was so sick. so i came and we had him on our bathroom floor, we’d made a little bed up for him so he’d be close by to our bed and he was lying there and i came into the bathroom and that silly little dog got up off of his death bed basically and he had to give me a tail was and then flop back down again- he used every little ounce of strength to do this… when i came in he mustered up enough strength to get up off his stomach and shake a tail and fell back down and that was the last he ever did get up. he was just so bonded- he had to do his task. when we were getting ready to put him down and my husband said, “you don’t have to do this. you don’t have to be with him” and i said to him “ oh no, i don’t care how i’m going to feel” i said, “ he went through that summer with me”. i said, “ i was not going to let him go through that alone, i was going to be there for him. that was really important to me. i really wanted to take care of him the same way he took care of me. hindering aspects: these incidents involved the emotional and physical strain of caring for a sick pet when one is sick themselves. in particular, the second participant who had to care for a dying pet while she faced cancer found the experience draining, guilt-provoking and at times, unbearable. she related feeling desperate, guilt-stricken, and incompetent, so much so that she bitterly punished herself for being an unfit companion to her best friend. these feelings stayed with her for years after her pet died when the interview was held. it was heart wrenching to hear this participant’s self-contempt around this issue, considering her own poor prognosis and long, painful battle with cancer. she stated: i let him down twice. he didn’t deserve the ending that he got. he deserved to have somebody who was well and who could be there and commiserate with him and send him on his way happily, instead of sick in the other room where we’re both asleep during the day because we are both sick and not getting the attention he deserved. if you’re getting sick, i don’t know which is worse. to have a dog that’s also sick and old. when i’m feeling okay i could have handled, but at the end i was carrying him up and downstairs.. no matter how you feel, you’ve got to. and taking him out and then you’re sick and you’re losing weight and you’re cold all the time and the weather is miserable and you’re having to go outside and it was awful. it was awful. wish list: one participant stated that she wished there were someone to take care of her sick dog at her home, as the only option she was given was to give him away. summary of chapter in this chapter i have conveyed the findings of my research in sections. firstly, participant personal accounts that outlined their experiences with their pets and their experience with cancer were presented. next participants’ definitions of wellbeing were reported in thematic representation. finally, the categories developed from the data were described and illustrated with verbatim quotes. this included helping incidents, hindering incidents and wish list items that emerged from the data. in the next chapter, these findings will be discussed in light of the related literature and implications for theory, research and clinical practice. chapter discussion overview the stories and experiences of the women who participated in this research were voiced and represented in this study to honour and learn from their experiences of having a pet while having cancer. in this final chapter i will discuss the findings in relation to the existing research and theory presented in chapter . through a careful exploration of the results and their relationships to the literature, i will demonstrate the ways in which this study supports a great deal of existing theory and research, counters some of it and adds new elements that can serve to broaden our understanding of the role of pets in the human experience. next i will delve into the resultant implications for research and policy and address the impact of the interviews on the participants and myself. following this i will discuss the implications for the clinical and theoretical domains of psychosocial oncology and counselling psychology. finally i will address the limitations of the study. comparisons to relevant scholarly literature the findings from the study substantiate multiple academic, empirical, and theoretical works in the areas of anthrozoology, social work, veterinary medicine, nursing, psychology and psychosocial oncology. the results strongly support theoretical and research based propositions regarding the socio-emotional and health benefits of having a pet. the data confirms topics from the literature regarding social support, attachment theory, existential psychotherapy, coping, psychosocial oncology, non-verbal communication, and the human-animal bond. these are found woven throughout the personal accounts, the categories and the incidents. there are also some results that challenge the literature, as well as results that are unique and new. the associated topics from the literature will be reviewed within the following areas that come directly from the findings and follow their order of representation in chapter : ) participants and their pets; ) participant personal accounts; ) defining wellbeing in the context of cancer, and ) categories and incidents. participants and their pets participants in the study were all women whose ages ranged from – , with one participant’s age unknown, resulting in a mean age of years. out of the women, had breast cancer. while the criteria for study participation had no limitations on age or tumour site, the results do mirror the canadian statistics whereby % of people with cancer are over the age of and by far, the highest occurring tumour site for women is breast cancer (canadian cancer society, ). the women, by and large, were well educated and were or had been employed in a range of employment settings. it has also been suggested that women with breast cancer are the most highly researched group in the psychosocial oncology literature (stanton, ) and this study follows suit, with of the participants dealing with breast cancer. similarly, the pet demographics of the participants in this study appear to be in line with canadian statistics. the canadian veterinary medical association ( ) reports that while % of canadian homes have a pet at home, usually made up of dogs and/or cats, owner behaviours such as regular veterinary visits with dogs suggest that more attention is paid to canine companions than any other types of pet. while several participants had other pets living in or around their homes, out of the participants reported about relationships with dogs and only one about her relationship with her cat. other studies suggest that the highest levels of social support experienced by pet owners are those that have canine companions, followed by feline companions (bonas, mcnicholas, & collis, ). thus the small sample in the study seems to reflect the canadian experience regarding type of pet and perceived support. walsh ( ) reports that while the great majority of people experience their relationships with their pets as strong emotional companionate bonds, the significance is more strongly seen for women living alone. because no men participated in the study, this finding cannot be considered. nevertheless of the women lived alone while the remaining lived with others. regardless of whether or not the women lived alone, there did not seem to be any significant differences in the level of bond with their pets. in addition of the participants had no children and were parents. empirical research and multiple surveys in europe and north america suggest that pet owners consider their companion animals to be members of their family (cohen, ; wells, ). similarly in this study all the women readily identified their pets as family members. whether or not they had human children, pets were referred to as their kids, “fur babies” and other terms of affection for children. participant personal accounts the priority of the first phase of the interviews was to gain some understanding of the context for the participants’ human-companion relationships and how they contributed to or hindered a sense of wellbeing as defined by the participants themselves. what emerged instead was a strong need on the part of the participants to speak at length and in detail about their pets. without solicitation, every participant spent considerable time describing the story of how they acquired their pet as well as their pet’s unique quirks and characteristics. in addition if the pet had been ill or died, a full description of these events was given. the women who lost their pets described symptoms of grief and loss that were consistent with the loss of a close human being such as spouse, family member or friend. this grief often was exacerbated by their own struggle with cancer. the personal accounts were strongly aligned with social support literature from psychosocial oncology and attachment theory literature, both of which will be discussed in a following section. in all the participant’s descriptions there were themes of special connections and fortuitous acquisitions of their pets. the women spoke with much gratitude, delight, and depth of emotion, often shedding tears and laughing while recounting their stories. these were the moments in the interviews where i found myself particularly drawn in emotionally. i likened this to moments in my counselling work where i felt that clients were sharing crucial elements of their lives through story and making meaning in my presence. through the process of data analysis i realized that these personal stories were being constructed to help make sense of the participants’ life changing experiences with cancer. as riessman ( ) explains, personal narratives include information that is “selected, organized, connected, and evaluated as meaningful for a particular audience.” during these sections of the interviews, the women seemed to embody their experiences, making new meanings about their relationships with their pets. all of the participants reported that this was a subject that few people had ever inquired about in any detail. defining wellbeing in the context of cancer as discussed in previous chapters, the closest definition of wellbeing found in the literature pertinent to this study comes from lent ( ). here the author focuses on the human capacity for finding and building resources and adapting to hardship, resulting in a subjective sense of wellbeing. while some of the participants in this study struggled to define wellbeing in the context of having cancer, of them illuminated six categories that are reflective of lent’s theory. in their efforts to describe the elusive concept of wellbeing, participants explained that they recognized and actively sought out sources of wellbeing within themselves and in their environments. these included: the benefits of nature; humour; peace of mind; spiritual support; remaining positive; a resolve to heal from their illness; focusing on healthy eating and physical exercise, and seeking purpose and growth from their cancer experience. finally, strong social support, which has always been a mainstay of wellbeing in the literature (helgeson, ; lent, ), was among the strongest elements that participants described about their companion animals. participants overwhelmingly reported the awareness that their cancer experience would have been “significantly harder” or “more difficult” if they hadn’t had their pet by their side. helping categories as discussed in the literature review, much research suggests that companion animals can moderate the effects of stressful life events such as divorce and bereavement (brodie & biley, ; walsh, ). the helping incidents and categories that emerged from the data concur with these findings as applied to the stress of living with cancer. in this study a total of incidents emerged from the interviews, comprised of helping incidents and hindering incidents. this profusion of positivity may be in part due to the fact that the study participants were all volunteers who love their pets, but it likely also reflects the strength and support of the relationships that people tend to have with their companion animals. this finding is congruent with conclusions made from research in the fields of anthrozoology, veterinary medicine, nursing and social work (walsh, ; wells, ). support in the literature can be found for all categories. what is perhaps most striking about the categories and their content are the similarities between what participants value about their pets and what people tend to appreciate about their human relationships. of the categories, refer to relational elements that could be experienced interchangeably in both types of relationships. the data in these categories are consistent with the massive body of psychological literature on relationship, a domain that focuses almost exclusively on the human- human relationship (knight & herzog, ). in fact, the single category that deviates from this is entitled “how pets are different from people”, and in this category, participants refer primarily to relational abilities in their pets they did not find present in their human support system. because the categories are so relationally based, there is overlap within them. there was a great deal of nuance within the incidents, in particular those that focused on companionship, social and emotional support, touch, love and pet as caregiver. woven throughout these and other categories were themes of intimacy, support, bonding, physical closeness, and trust. i will explore the two major areas in which all the categories and incidents are linked to existing research and theory. these areas are social support and attachment theories. following this, i will focus on of the categories where other relevant links, differences and additions to the literature were found. social support. the term social refers to the interaction of living organisms with other organisms and the experiences and behaviours of individuals in groups. social refers to living species in general, and even includes the tendency of types of flora to group together and “form cooperative and interdependent relationships with others.” (merriam webster, ). somehow when the term “support” follows the term “social” however, organisms other than homo sapiens seem to be dropped from the equation. it is concerning that the psychological domain focuses only on social support that comes from other human beings. bonas, mcnicholas and collis’ ( ) study indicates that in the realm of support, human-companion animal relationships are highly comparable to human-human relationships. my study, along with many others in the hab literature, confirms that people with pets regularly experience their companion animals as sources of significant comfort, assistance, reassurance, and emotional sustenance, namely social support. the categories in this study show many linkages to the psychosocial oncology literature regarding the benefits of relational fulfillment and emotional support for good coping and adjustment during illness. individuals facing cancer commonly experience anxiety and depression, loneliness and isolation, and the need for increased support (helgeson & cohen, ; massie, ). participants in the study often commented that they did not feel lonely with their pets around them. several even acknowledged the awareness that “they could have been lonely” during this time. pets were cited as one of the primary reasons participants did not feel isolated while at home dealing with side effects from surgery, radiation or chemotherapy. in folkman and lazarus’ frequently cited ways of coping inventory ( ), the seeking out and receipt of social support is one of the five coping patterns discussed in the authors’ oncology adaptation of their theory. cicero, lo coco, gullo and lo verso, ( ) found that cancer patients who perceived sufficient receipt of social support experienced significantly lower levels of distress and coped better psychologically. in my study this was apparent. the participants repeatedly reported positive experiences of support from their pets: the provision of care, concern, affection, assistance and companionship throughout their cancer experience. as discussed in chapter , helgeson ( ) explains that higher levels of quality of life are more strongly related to a person’s perceived support than they are to observable support exchanges, what the author refers to as received support. thus in helgeson’s paradigm, pets clearly constitute part of the participants’ reservoirs of perceived social support. in many cases this appeared to be even more so than the human beings in their lives. in the category “how pets are different from people”, participants explained that the support they received from their pets was unique and unlike anything available from the human beings in their lives. the last area of social support to be explored is the topic of pets functioning as social lubricants for their owners/companions. in the work of mcnicholas and collis ( ), it was found that the presence of pets or animals increased social interaction between and amongst people. they observed a rise in social approaches to people in public parks when accompanied by an animal. this finding was most noticeable when the animal in question was a canine. this finding has been replicated and further considered in relation to the breed of dog accompanying people. invariably participants in my study described this same type of social lubrication provided by their pets as illustrated by the following quote: “when you’re out on a walk, people like to talk to them or, you know, so they’ll talk to you a little bit, so i get a bit more interaction. which is good because i’ve noticed like i think i’ve been out of sort of a social world for quite a long time now and ..this way it gives me the opportunity to talk to other people ‘cause they want to talk about the dogs or tell me about their dogs or whatever…” this is significant because loneliness is a well-known problem in the cancer world (preyde & synnott, ). attachment theory. attachment theory (bowlby, ; ; ainsworth, ) is the cornerstone of psychology’s understanding of the development and maintenance of intimate bonds and close human relationships. the original theory identifies four features of the attachment process that have been broadly studied within the context of infant-parent relationships, intimate love relationships and more recently within human-companion animal relationships. three out of these four features are clearly present in the personal accounts and categories of this study and will be explored. the fourth feature, “secure base” was not observed as readily in the data. of particular note is that many of these elements were evident in the behaviours of both the participants and their pets. proximity maintenance: “companionship and presence” was the most highly endorsed category in this study, essentially describing proximity maintenance as defined by attachment theory. all participants focused on the fact that their pet was always there. they repeatedly commented on how helpful and comforting it was to have their pet physically close by to them throughout the highs and lows of their cancer journeys. as shown in the ninth category “touch”, endorsed by of participants, pets were cuddled, held and touched providing warmth and security similar to that of a parent or a romantic partner. “ wherever i was going, that’s where he wanted to go…you were never lonely, you were never lonely and you could have been. when you’re so sick and you’re in a house by yourself you could get lonely pretty quick, i would think. but you never were because you never were alone.” separation distress: similarly, participants did not want their pets to be far away. despite the fact that many of them found the caretaking of their pet to be stressful at times, the thought of being without their pet was not desirable, indicating separation distress. the women also grieved the illness and/or death of their pets, often causing mournful longing and sadness. safe haven: the th category, “pet as protector and caregiver” was endorsed by out of participants and provided clear linkages to elements of “safe haven” as described by attachment theory. participants described feeling secure with the knowledge that their pet was close by. they perceived their pet to be alert and on guard for them in ways that increased emotional and physical safety, as evidenced in this quote: “my pets made me feel safer. if i was home alone and also when i went for walks they would always be with me. and i live in a rural area so i feel safer being with my dogs. walking was the only exercise i could do… and they made me feel safe.” research on attachment and companion animals also provides strong linkages with the results of this study. the primary researcher in the field, kurdek ( ) demonstrated that pet owners seek closeness to their companion animals and find this proximity to be of comfort. the participants in this study described the same type of comfort received from closeness with their pets. they trumpeted the related benefits of healthy attachment to their companion animals. this seemed to occur whether or not participants were living alone or with someone, had children or were childless. this also supports hazan and shaver’s ( ) findings that attachment occurs beyond infant and parent, playing out in romantic relationships, friendships and more recently in companion animals (kurdek, ; serpell, ). attachment to pets may serve to mitigate additional stressors that could result from living alone with an illness and feeling unsafe or more vulnerable than prior to one’s illness. helping categories in relation to research and theory. companionship and presence. this first and most strongly endorsed category indicates that participants found that the presence and companionship from their pets helped them face the myriad psychological, emotional, interpersonal and intrapersonal challenges accompanying cancer. in her longitudinal study of elderly people with companion animals, enders-slegers ( ) reported that participants believed their pets helped them to fend off feelings of loneliness. the participants in this study regularly voiced that the presence of their pets helped them minimize feelings of isolation. many of them described their pets as being “on their cancer journey with them” and/or “sticking by their side through thick and thin.” in this way it appeared that the women felt they were not going through the difficult experiences of diagnosis, treatment and side effects alone. for those participants whose only live-in companion was their pet, that relationship seemed critical. as such, wish list items in this category included the hope that pets could have visited them while in hospital and accompanied them in public places. it is possible to liken the denial of their pets visiting in hospital to the denial of family member visitations, something that is only done in the most dangerous health situations. even when there is significant concern for contagion, close family members are permitted to see their hospitalized kin with protective coverings or in separate rooms. one participant talked about visualizing her cat and sending love to him during or while waiting for radiation therapy. three others found the time when they were separated from their pets to be painful and demoralizing. finally one participant who could not care for her pet due to her own illness was offered by social services to have her pet relocated to another family. this option was both insulting and devastating to her. if in fact, as the existing literature and this study suggest, people are experiencing their pets as next of kin (beck & madresh, ), then it becomes unimaginable to consider sending a family member away or denying a cancer patient access to their closest loved ones. unfortunately this may be a regular occurrence for people with illness who have close relationships with their companion animals. emotional and social support. within the multifarious areas of relationship science, it is widely accepted that good emotional and social support are key elements in mental health, wellbeing and quality of life (reis & rusbult, ). this second category, also endorsed by all participants, demonstrates that they clearly experienced their pets as supportive in both emotional and social dimensions. the social support component was covered in a prior section so i will address emotional support here. it is well established that the diagnosis, treatment, and survivorship of cancer brings with it considerable emotional distress (bultz & carlsson, ). the incidents in this category are littered with examples where participants felt emotionally supported and cared for by their pets. they explained that their pets were able to soothe them during times of emotional suffering and were capable of helping and accompanying them through moments of anguish and sorrow. four participants talked about crying with and talking to their pets for comfort during times of distress and emotional upheaval. one explained: “i would sob and sob….and he would lick my tears…” almost all the women expressed the experience of being calmed down by their pet during times of agitation. this calming quality seemed to occur on both psychological and physiological planes, supporting the hab literature regarding the health and psychosocial benefits of pet ownership (wells, ). participants loved and felt loved by their pets. they reported experiencing this love and devotion as comforting, reassuring and healing. finally, this category contained multiple incidents where participants described feeling reassured by their pets that they were “still the same person” as before their cancer. the need for this type of reassurance is well established in the psychosocial oncology literature (preyde & synott, ). in their meta analysis of psychosocial interventions for cancer patients they found that patients’ primary psychosocial challenges included altered self- perceptions and problems interacting with family members and significant others. as a result of the disease and its treatment, cancer patients regularly face substantial changes in their appearance and abilities including disfigurement, hair loss, constant fatigue and difficulties with concentration and clarity of thought. understandably any of these changes might be as difficult for family members and significant others as they are for the patients themselves. somehow however, these types of changes do not negatively seem to impact the behaviour or perceived feelings of pets toward their human companions. the participants found this fact to be settling and comforting given the regular, multiple physical and cognitive changes they faced. as stated by a participant: “when my hair fell out, with b (dog) it’s just ‘oh hey you know you’re the same person’ so… i felt that was really reassuring you know. just to help me feel like the same person, so emotionally definitely i felt like he was a big support.” purpose and role. having cancer often involves challenging one’s basic assumptions about self and the world. cancer patients tend to feel inadequate, vulnerable, less in control of their lives and more confused about their identity and role, as preyde and synnott ( ) reveal in their meta analysis. in this third category with % participant endorsement, the women described feelings of purpose and competence because of their companion animals. in particular, they spoke of their ability to continue to provide nurturing to their pets. for both the mothers and those without children, all expressed a satisfaction felt from being able to care for their companion animals in whatever form they were able. this finding is consistent with current theoretical research on the need to nurture. walker ( ) explains in her book about childfree living, that the human need to nurture and care for others is fundamental, but that it can be expressed through relationships other than parenthood in fulfilling ways. in this category, participants provided multiple examples of feeling purposeful through nurturing their pets. they experienced a positive sense of personal purpose and goal achievement by feeding, walking and tending to pet’s daily needs. social work and health care researchers have also acknowledged the importance of altruism and a sense of competence in helping others when people are ill (ironson & powell, ). participants conveyed that looking after someone/something else other than themselves when they were ill helped to maintain normalcy and a sense of competence and purpose: “it gave me some focus other than myself, making sure that he was fed.” this suggests yet another potentially unrecognized benefit of pet ownership during times of adversity or illness. how pets are different from people. when asked to specifically explore which aspects of their pets helped and/or hindered their socio-emotional wellbeing, of participants readily identified differences between their companion animals and the people in their lives. all these differences were aspects of pet behaviour or characteristics that were superior to those of human beings. this finding is linked to the research reporting that people feel often feel closer to their pets than they do to family members, in particular during times of personal challenge (albert & bulcroft, ; beck & madresh, ). the results of this study perhaps flesh out the reasons for this to be so common. multiple studies indicate that people often experience the presence of a companion animal as more effective in providing comfort and decreasing stress levels than the presence of a friend or partner (bonas, mcnicholas, & collis, ; walsh, ). in this study pets were described as “more grateful”, “not manipulative or phony”, “more easy going than people”, and as behaving without judgment or guilt. they felt their pets didn’t tell them what to do or cause any drama and experienced them as completely forgiving, something that was lacking in the people in their world. one can easily see why people, particularly those who are ill and vulnerable, might find the company of their pets more palatable. participants also described their pets as offering a type of healing or presence simply not possible from other human beings: “i had a surgeon, surgery, the chemo, and my oncologist and nurses, you know and pharmacists and then i also went to an acupuncturist and did hypnotherapy and went to a naturopath and all these people, and i had a friend doing reiki for me and people praying for me… with my cat, i was just able to cuddle him. and it was just a healing that, i can’t express it, it was a healing in my own home. and it was different, totally different.” health and pain management. participants recognized that their pets offered increased opportunities and motivation for physical exercise and movement. participants noted that they would not have walked as much if they didn’t have to take their dog out. likely, at the very least, their cardiological health would have benefitted from this increased activity as has been shown in the findings of friedmann and thomas ( ). participants also marveled at the ability of their pets to assist with pain management. it is well known that pain is primarily perceptual and is best assessed by self-report (national cancer institute, ). pain management is a highly individualized phenomenon often requiring a combination of techniques and approaches. the women in the study explained that their pets were able to assist them with pain management through distraction, holding, and presence. their dogs allowed them to squeeze them until pain subsided and did not leave their side until there was some relief: “he’ll just let me squeeze his leg until that painkiller would end. it amazed me, of course and it helped me to touch him, and mostly i would get his leg and just grab and not, not a sound would come out of him.” it is possible then that pets may be underutilized sources of pain management for patients with bonded animals. pet intuition and adaptability. this category, endorsed by of the participants represents previously unreported findings in the hab literature to my knowledge. much has been written, across many disciplines, anecdotal reports and informational books about the area of animal emotion. it is well documented that animals other than humans display joy, sadness, grief, and empathy, as well as have complex social networks and methods of communication (moussaieff -masson & mccarthy, ). the women in this study spoke of an intuitive sense they perceived from their pets regarding their needs. i have lovingly called this psp (pet sensory perception), a term that participants responded quite positively to during the member checks. participants reported feeling surprised and amazed by their pets’ intuition and immediate behavioural adaptations once they were diagnosed with cancer. “he would just have such intuition, knew when you were sick, would come up, wouldn’t bounce on you, he would come up and just lie right there and stay very quiet and look up at you. i can just picture him- looking up at you to make sure that you’re there.” the notion that pets have an ability to read their human companions has been explored by sheldrake ( , ) and other researchers. it has been found that dogs, for instance, seem to know at least minutes in advance of when their “owners” are coming home from work or outings, regardless of changes in their time of departure. the capacity of pets to adapt to their human companion’s needs is a fascinating area that warrants further research and exploration. being positive and in the moment. positive psychology has demonstrated that optimism and life meaning help us to cope with the management of life’s challenges, including serious illness (ironson & powell, ). in their study, cicero, lo coco, gullo and lo verso, ( ) found social support to be positively associated with fighting spirit and an optimistic outlook, and negatively associated with a fatalistic attitude toward illness. in this category, endorsed by of participants, the women described their pets as “keeping them going”, keeping them “focused” and providing inspiration and “positive mental attitude”. these were often linked to a sense of being balanced, grounded and “in the moment.” current research on the benefits of mindfulness training support these findings. the work of jon kabat-zinn ( ) involving mindfulness based stress reduction (mbsr) is being broadly researched and found to be of great success for people suffering from anxiety and depression and a host of other conditions. in their study involving patients with breast and prostate cancer, ledesma and kumano ( ) found that mbsr participation was found to increase quality of life and decrease stress for the great majority of subjects. it is possible that companion animals naturally provide some of the same benefits offered by mindfulness practice, or perhaps that some non-human animals have more innate capacities for mindfulness. touch. caring physical touch is an essential factor in both healthy attachment and social support. it is also often cited as a primary positive aspect of having a dog or cat. there is ample evidence indicating that both the human and pet experience health benefits such as increased oxytocin levels and lowered blood pressure and heart rate from touching, cuddling, petting and holding each other (miller, kennedy, devoe, hickey, nelson & kogan, ). participants explained that touching, snuggling and stroking their pets helped to bring warmth, calm and comfort into their experience of cancer. they perceived that the pets experienced similar positive responses as both readily sought out this physical contact. “it sounds weird but just to cuddle with him- and i find giving him a massage relaxes me. it’s just that slow repetitive motion of doing it, and being quiet and him being quiet and calm - it’s very therapeutic on it’s own.” research in therapeutic touch (tt) in cancer care has shown that, despite the need for more empirical support, the gentle laying of hands in tt as a supportive care intervention is highly beneficial for many patients (stephen, mackenzie, sample, & mcdonald, ). even more relevant is the reminder from health care specialists in oncology such as dr. shapiro ( ) that touch and affection among couples and family members during cancer is paramount. in their interactions with each other, human beings and their companion animals seem to know and act upon this instinctively and without fail. existential and spiritual factors. the loss of or difficulty in experiencing relational fulfillment may be a significant source of distress for persons with cancer. these struggles may stem from the inevitable desperation that is encountered when individuals develop a heightened awareness of their vulnerability to isolation, death and the responsibility in finding or creating life meaning and connection in times of adversity (nitkin, ; van deurzen, ). this can be exacerbated by the multiple myths and stigmas surrounding both cancer and mental health (holland, ). we have seen in the findings of this category, endorsed by of participants, that many of them felt their pets provided them with a meaning, reason to live, to fight or go on: “the love for this pet gave me a purpose beyond my illness.” existential and humanistic psychotherapeutic theories highlight universal (human) concerns such as the need for relationship and to overcome separateness (may, ), the need to be affirmed (buber, ), and the need for meaning in life (frankl, ; van deurzen, ). for many of the women in this study, their pets clearly provided them with a source of meaning during their cancer experience, one that is often associated with considerable existential suffering (henoch & daniellson, ). participants also experienced a decreased sense of isolation due to their pet’s presence, and for some, this presence continued on after the death of the pet. in addition, from a spiritual point of view, many participants talked about a feeling of transcendent connection to their pets. weaver and flanelly ( ) suggest that people with cancer who rely on spiritual and/or religious beliefs tend to use more active coping mechanisms and focus on their condition with a more positive and purposeful approach. this was evidenced in several participants who expressed strong spiritual links with their pets. often they were motivated to face treatment when in hospital or alone by spiritually connecting with their pet, be they alive or deceased. these connections served as sources of companionship and hope that lay outside the physical realm. family members and finances. this category, endorsed by of participants had an equal number ( ) of helping and hindering incidents, although the he’s were more strongly supported. from the helping perspective, some participants found that the shared love and devotion to their pet strengthened their partnerships with significant others as a unit against the cancer. others with children felt that the pets provided a unique source of support to their kids. as cohen ( ) discusses in her work seeking to discover what people mean when they say: “my pet is a member of the family”, pets function as family members for the great majority of homes with companion animals. they provide affection and intimacy, are considered in decisions that impact the home and family and are treated like kin in most ways. she goes on to say that this is so “even if the support they provide cannot be neatly plugged into standard social network categories” (cohen, ). this quote provides an excellent illustration of what was heard by the participants in this study. hindering categories beck and katcher ( ), one veterinary professor and one psychiatry professor well known in the anthrozoology field, note that up until recently much of the existing hab research is derived from studies where human participants volunteered their time and as such, the domain may be biased toward situations where people feel primarily positively about their pets. the professors recommend that future hab research pay attention to both the positive and detrimental elements of the human-animal bond, as we know little about either. this was an important part of my rationale for using the ecit method as it specifically inquires about unhelpful elements of a phenomenon, in this case, having a pet while dealing with cancer. the study unearthed several more troubling aspects of having a pet during illness, thereby challenging the western media’s stereotype of pets always being wonderful and loving companions. out of a total of incidents, of these were of a hindering nature. thus just less than one-sixth of participant’s experiences with their pets were experienced as detracting from, rather than contributing to, their wellbeing. of the categories included hindering incidents, and one category had more hi’s than he’s (caretaking of sick or dying pet). the bulk of hindering incidents fell within the emotional realm. participants expressed that they often worried and felt guilty about their pet’s health and quality of life, and whether or not their caretaking needs were being sufficiently met. the women made comments such as: “i’m not taking good enough care of him”; “what if he isn’t walked enough, or gets sick?” and “i don’t want him to suffer or worry about me.” these concerns were very real for the women. while all participants stated that the positives outweighed the negatives, it is notable that considerable stress was added to their circumstances from worry about their companion animals. as touched upon previously, this was most strongly felt when pets were sick or dying. when pets were sick, significant additional strain was put on the patient and their family members. they expressed a sense of failure in being able to provide for their pet’s health care needs in the way they normally would have. there were feelings of regret and guilt at times mixed with frustration and being overburdened: “how can i take care of him when i can’t even take care of myself?!” one participant and her husband whose dogs were both sick while she had cancer felt uncomfortably pulled between meeting the needs of their sick pets and herself. they coped impressively but were certainly faced with increased physical and emotional demands as a result. naturally this category included wish list items for financially supported programs that help with sick pets when owners are incapacitated. for the participant whose dog suffered from serious illness and later died, she described the experience as “hell.” in her search for help in vancouver, the only assistance she could find was through a social worker and animal control services, both of which stated all they could do was to take the dog off her hands and find him another place to live and die. one can only imagine the devastation of such an offer. following this interview i searched for any services of this ilk and found there was none readily available. clearly there is a gap in service that should be addressed by the s.p.c.a., veterinary services, government agency, or private sector. other participants described the fear that their pet would die, or that they would die and leave their pet alone and abandoned. while several spoke to family members or friends about caring for their pet if need be, the majority of the time, participants felt uneasy addressing this potentiality with the people in their lives. zhang and siminoff ( ) report that many cancer patients and their families fear death, but neither can express those fears to the other for various reasons. the authors cite mutual protection and fear of emotional overwhelm as two of the potential explanations for this lack of communication about death and dying. it seems plausible that the same phenomena may be occuring with people with cancer and their pets. additional hab research shows that pets are not always helpful. in connell, janevic, solway, & mclaughlin’s study ( ) of caregivers and spouses of people with alzheimer’s disease, the authors found that while the majority of partners felt the illness deepened their bonds with their pets, many caregivers also acknowledged that the animals became increasingly more of a strain as the ailing person’s condition deteriorated. the women in this study expressed a similar increasing strain caused from worry, guilt regarding the caretaking of pets as their own condition worsened due to treatment side effects or advancing illness. this phenomenon was most intensely experienced when participant’s pets were ill or dying. wish list items confirmed this distress, showing that what participants really wanted was someone to take care of their pets so that they could still be with them. finally, participants at times were disadvantaged financially and physically due to caring for their pets. they found that feeding, walking, and caring for their pets ate into their already limited energy and economic resources. at times they felt this worsened their sense of weakness or incapacitation: “i just don’t have the strength, i don’t feel well enough to feed him, it makes me feel useless.” some of them worried the pet would negatively affect their own health due to infection from their compromised immune systems. several women and their partners experienced the financial strain of hiring dog walkers to assist when the participant was unable to go out. none of these participants wanted to part with their pets. their wish list items called for financial assistance in looking after the needs of their companion animals. recommendations for future research throughout this chapter i have made reference to important areas for future research that emerged from the study’s findings. i will address these and others further here. because the field of anthrozoology is so young, unexplored, and significant, i found that the process of this research left me inundated with ideas of important theoretical and empirical studies that should be explored by psychology and anthrozoology scholars. first and foremost, the question of how we see and treat animals and pets as compared to our own species requires much consideration. as mullin ( ) explains, human beings and animals represent a complex set of relationships. we eat some animals; we live with, love and care for others; we are frightened and disgusted by some; are mystified and fascinated by yet others; and dissect and research others for the betterment of our own species. what of this animal hierarchy? the question of defining personhood is the subject of philosophers and ethical theorists, but also comes into question for pet owners. what rights do companion animals have? what rights do people with pets have? pets are denied access to most public institutions and places of retail. only service animals are permitted in such places. in this study as well as others, it is clear that many people greatly rely on their pets both emotionally and physically, even though they are not formally “service animals”. while aat is a highly valuable field, there now exists a hierarchy whereby those animals working for humans and their “employers” are given higher status. based on the findings of this research, it would be important to further explore the experiences of people who rely on their pets for support yet are denied open access to public places and daily life activities with their companion animals. secondly, the field of psychology should explore the impact of companion animals on people with mood disorders, both from theoretical and clinical viewpoints. the findings of this study as well as many others in the hab strongly support the emotional benefits of pet ownership. this was a small study that focused on individuals with cancer, generally a group that faces multiple psychological, physical and emotional challenges. many of the helping incidents leaned toward implications that pets helped participants to mitigate anxiety and depression. only one or two studies considering this point have been done. the impact of companion animals for people with mental health challenges and other illnesses needs to be expanded. a further important area to be considered for psychological research is the role of pets as surrogate/adoptive children in people’s lives. an unexpected finding from this study was the importance of the ‘child role’ that pets took on for over half of the participants. they benefitted from the nurturing, caretaking, attachment bonds and affection they experienced with their pets. clearly companion animals are fulfilling the role of child for many individuals whether or not they have human children of their own. given the growing incidence of childlessness and infertility, pets and the human animal bond may be an area of important consideration for childlessness research. a brief internet search suggests there is no scholarly work on the topic. finally, the notion of pet intuition and adaptability and the term i have coined “psp” (pet sensory perception) form another unique finding that would be a fascinating area of study for psychology and other domains interested in communication, social support and healing. participants experienced their pets as somehow able to both intuit and immediately respond to their changing needs after diagnosis. these abilities were of great benefit to participants in that they felt they did not need to articulate difficult feelings or needs that were being met by some of their closest companions. what are dogs and cats able to do to help alleviate suffering in such an effortless way, and what can we learn from them about this astounding capacity? implications of the study counselling psychology theory and clinical practice this study was done in the hopes that some of the findings would serve to develop theory and inform clinical practice regarding the hab and its place in people’s lives, and thus in the field of psychology. well over half of canadians have pets (perrin, ). there are striking similarities that exist between human-human and human-companion animal relationships and this study found several areas in which participants experienced their pets as providing them with superior support to their human systems. currently no literature in counselling psychology that directly explores these relationships has been found. given the apparent import of human-pet relationships, the results of this study concur with multiple researchers and clinicians who are puzzled by the paucity of theoretical, research and clinical attention paid to the hab by the field of psychology (hines, ; kurdek, ). the findings of this study strongly suggest that pets constitute extremely significant aspects of people’s lives and relationships, in particular, when they are facing adversity. the interviews were longer than expected; participants were bursting to tell the stories of their pet special pet relationships. counselling psychology came into being by identifying itself as a profession that took into account the broader socio-emotional factors impacting upon people and their relationships such as socioeconomics, culture and diversity, and privilege and power. it is clear from this study and hab research that pets are considered to be family members (cohen, ) and sometimes the only sources of support in people’s lives. it is possible that pet owners may have a distinctive culture and set of needs that are not being addressed when seeking therapy. if counsellors do not ask about companion animals, they may be missing salient information about their client’s inner world, constellation, system, support resources, and emotional and practical needs. pet bereavement is also a growing reality in the western world. when people lose their companion animals, they often experience the same grief reaction as they would to the death of any loved one (barton-ross & baron-sorensen, ). individuals may be ashamed that the grief associated with the loss of a non-human is so disruptive to their lives. academic or employment institutions do not acknowledge this loss. students or employees who lose a pet may often not be given the same consideration as those who have lost a family member or close friend. given what we know about the similarities people feel for their pets and the people in their lives, queries and interest in client’s pets would be met with appreciation. it is my belief that counseling psychology is once again the ideal forum to bring forth this important example of diversity by formally welcoming the hab into the clinical world of counselling. psychosocial oncology one of the main purposes of this study was to examine the role of companion animals as potential sources of social-emotional support in the lives of cancer patients and survivors. the results overwhelmingly suggest that this is regularly occurring. it is then incumbent upon psychosocial clinicians in cancer care to incorporate pets into their assessments and therapeutic work. counsellors, social workers, and nursing care providers should educate themselves about the human animal bond and the impact that pets may be having in patient’s lives. both inpatient and outpatient clients may need additional practical help to look after pets while they are in treatment or hospitalized, or while they are at home but incapacitated by their illness, treatment or side effects. this kind of assistance may include financial resources for help with pet care, feeding, and dog walking. it is important that human-companion animal relationships at least be considered in the clinical realm of psychosocial cancer care. these relationships may offer an untapped resource to augment the service. clinicians may find that companion animals offer new opportunities for support and exploration for clients and their family members. for some people dealing with prolonged disease, their pet may provide a unique opportunity to maintain their caregiver role; remain needed and strong, and avoid getting lost in the role or identity of patient. there are also many people for whom the primary source of connection is their pet (risley-curtiss, ). it may be that these individuals are unable to benefit from these relationships when they are sick in part because professional health care providers pay little attention to them. in such cases, ailing individuals may benefit from assistance and resources when challenges in caring for and/or being separated from a companion animal arise, just as would be done for a patient’s child or needy family member. it would also be helpful to know more about the experiences of patients with a different type of cancer than breast cancer. psychosocial research on therapy for cancer patients can benefit from research that explores the complex and unique ways in which people navigate all their relationships including those with their pets. public policy it is significant and of concern that statistics canada does not collect relational or demographic information about pet ownership (statistics canada, ) and yet the average annual spending on pets exceeds spending on childcare (statistics canada, ). pet food and pet health industries do the bulk of survey work regarding pet ownership worldwide. from the findings of this study as well as the bulk of hab research, it would seem important that the government show interest in such a large portion of the canadian population and the benefits and challenges of having pets. in addition, b.c. law continues to allow landlords the right to deny pet owners rental of their lodgings. this fact may deny many isolated, sick or needy individuals the ability to fulfill their needs for support and companionship through a companion animal. many professionals in the animal welfare and business domains are attempting to have this legislation changed. i concur with them. from the health care perspective of the study it seems clear that people who are ill may benefit from and even need to have contact with their companion animals while being treated for their conditions. as such, canadian hospitals and health care centres should allow greater access to people and their pets. given the problem of contagion and allergies, i propose that health care facilities have rooms or areas designated for patients who require their pet for support. there is also a substantial need for government and/or private funding for pet care when someone is hospitalized or unable to carry out their caregiver duties to their pets. this way patients could continue to benefit from the social support they receive from their pet without having to experience the additional stress of feeding or walking them when the person responsible for them is incapacitated. these suggestions are presented from an idealist viewpoint. given my years of clinical experience in health-care i understand the enormous financial limitations that medical and health-care organizations face. while it may be unrealistic to expect that patient’s pets become a focal point in health care policy and funding, it also seems clear that the complete neglect of companion animals is unfair to patients for whom their pets play an essential role. finally, some health care personnel should be trained to deal with animals so that pets do not have to be sectioned off in their own homes when home care support comes to assist a sick person who is highly reliant on their companion animal. in general, there is a growing need for health care and public policy to pay attention to people and their pets, given the number and impact of companion animals in our country (globe and mail, august ). process of conducting the study the interviews were emotional experiences for all participants. they noted that they had not talked before about the role their pets played in their cancer experience and the memories and feelings were often very tender. the experiences of cancer described by participants were very wrapped up with their relationships with their pets. it seemed to me that the interview offered an opportunity to potentially construct new identities and meaningful ways of conveying the bond with their pets (reissman, ). although the intent of the interviews was not psychotherapeutic, participants expressed that they felt both a sense of relief and emotional catharsis following our discussions. this may in part be due to my natural inclination and experience as a clinical counsellor whereby i tend to employ empathy and collaboration in my interpersonal communications. i did feel a sense of rogerian ( ) genuine care, interest and compassion for all the participants i met with and communicated this care openly to them. their relief may also be indicative of the unique form of interviewing often found in qualitative research, one in which polkinghorne ( ) states “there is considerable overlap between the skills involved in research interviewing and those needed by counselling psychologists in their counselling and psychotherapeutic work.” he goes on to say, however that the goals of both activities differ significantly. with this in mind, i was mindful to gently bring participants back to the subject matter at hand when we seemed at risk of straying too far off into the therapeutic domain. what seems most pertinent to me is that many of them stated that they had never talked about their pets for such a protracted period of time, and that the subject allowed for the emergence of new and unique considerations from their cancer experience. i have worked for close to twenty years in the health care field, primarily in palliative care, oncology and long-term care. as a music therapist, i have explored the role of music as an agent of therapy and healing on the physical, emotional and psychological planes. i have also delved into the field of relaxation and mindfulness meditation as supportive interventions in my palliative care and oncology work. thus i am no stranger to alternative therapeutic forms. the human animal bond and the impact of pets in people’s lives have been the most personally and professionally impactful area i have explored. this is likely because it is the most relational topic of all those i have been drawn to. i have been moved and amazed by the relationships that participants described with their pets, as well as by the power of animals to transform lives and offer hope. as a pet owner myself who is besotted with dogs, cats, horses, cows, deer and pigs, i have developed an even deeper gratitude for the dogs in my life and to the animals in my surroundings. limitations of the study all research has its limitations. in particular, in the field of relationship science and psychology, the nature of studying phenomena, constructs and creatures that have constantly changing variables acting upon them is often poorly represented by quantitative research. for this reason, i chose a qualitative method that i believed to best suited to the subject matter at hand. ecit provided an excellent format for exploring the benefits and drawbacks of having a pet while dealing with cancer. the method however, generates a large body of data, some of which is not fully represented in categorizing themes from the incidents and context questions. secondly, the results of this study cannot be generalized to any group. the number of participants in the study was small and included only women. thus, we have not learned anything about the experience of men with cancer who have pets. the type of pets was limited as well. twelve of participants spoke about their dogs and only one about their cat. a few of the participants briefly discussed the impact of horses and other farm animals, however, while the findings are reported with the term “pet” and “companion animal”, the data is in actuality reflective of numerous dogs and one cat. i also did not ask about the type of dog or cat that participants had, and since the interviews, i have seen that the literature does explore differences in the human-canine bond based on breed. finally, because the participants were all volunteers for study, i likely was not exposed to people with cancer who found their pets to be disastrously troubling throughout their illness, or even those who had pets and didn’t really care for them but had them for other reasons than companionship or because of another family member. future research in the area will hopefully expand on some of these limitations. conclusion the young but fast growing field of anthrozoology illustrates the enormous impact that non-human animals and human beings have on each other. this study demonstrates that the lives of the participants in this research were greatly affected by their pets while they went through cancer. in support of the findings in psychosocial oncology, pets are seen as providing four out of five of the psychological needs as found in helgeson and cohen’s ( ) meta-analysis: ) enhancement of self esteem; ) restoration of perceived control; ) making meaning of the experience; and ) emotional processing. the research offers new insights for theory and clinical practice. pets may be able to intuit and respond to their human companion’s needs in ways that have not been explored. people are connecting with their pets on spiritual levels that are of benefit to them when they are ill. they are sources of intimacy, meaning, and pain management. in addition, it is clear that many people with cancer are relying on their pets for the much-needed social and emotional support required to cope with serious illness. it is also significant that cancer patients may require financial and/or practical assistance for pet care needs in order to continue to benefit from that support. the primary goal of this research study has been to explore the meanings, benefits and challenges of having a pet during times of distress and/or illness. in my attempt to bridge some of the gaps that were identified in the hab and psychological bodies of literature, this study demonstrates the great significance of pet relationships in the lives of the participants facing cancer. this small study has illuminated some of the cogent elements related to the poorly understood and under researched phenomenon of pet ownership during illness. it is my hope that both counselling psychology and psychosocial oncology will begin to incorporate what we know about the hab into their theoretical and clinical domains. we know categorically that human beings need social support, and we can be equally as certain that companion animals are providing it to many. references ainsworth, m.d. s., blehar, m.c., waters, e., & wall, s. 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(doctoral dissertation). retrieved from https://circle.ubc.ca. appendix a recruitment poster a	
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  pets	
   we would be very interested in hearing your experience if v you had or have a pet for at least three months while dealing with cancer v your diagnosis was over four months ago v you are over years of age and v you are willing to talk about your experiences in a confidential minute interview. the purpose of this research project is to explore the relationships and experiences of individuals who have had a pet while dealing with cancer. little is known about how pet companionship affects people during times of illness and adversity. you will have the opportunity to discuss how your pet has helped you and/or made things more difficult for you during your cancer experience. all information will be kept strictly confidential. if you would like to participate or find out more about the study, please contact patricia nitkin, phd candidate. patricia nitkin, ma, ccc, is conducting this study as her ph.d. dissertation research in counselling psychology at the university of british columbia (ubc). the principal investigator and supervisor of this research project is dr. marla buchanan, professor in the department of counselling psychology at ubc. please contact patricia nitkin for information about the study. appendix b information letter for prospective participants introductory letter relationships between people with cancer and their pets dear prospective participant: my name is patricia nitkin and i am investigating the experiences of people who have or had a pet while personally dealing with cancer. this research is part of my phd work in counselling psychology at the university of british columbia. upon completion it will result in a doctoral dissertation that will be housed in the ubc library and available to the public upon request. i am interested in learning about both the helpful and challenging aspects of having a pet during an illness experience. so little is known about how pet companionship affects people during times of difficulty. this study is personally meaningful to me as my companion animal was of great importance to me during times of difficulty. it is my belief that the relationships that people have with their pets are poorly understood, and often both the negative and positive aspects are underestimated. i hope that the results of this study will contribute to a better understanding of what it is like to have a pet during times of personal adversity. i also work as a part-time clinical counsellor at the british columbia cancer agency (bcca) and have spoken with many individuals who experienced both benefits and challenges from having a pet during their diagnosis and treatment. for ethical reasons, i cannot interview you if we have already worked together in a professional capacity. in addition, i would not be able to work with you in a professional capacity in the future should you wish to participate in the study. this research is being conducted as part of my student role at ubc and is not formally related to my work at bcca. you are receiving this letter because i have asked some of my professional colleagues to forward the letter to individuals they believe may be interested in the study. i will not be informed of the names of people who are being sent this letter. only those individuals who contact me directly to indicate their interest in participating in the study will become known to me. in addition, the person who sent this letter to you will not be informed of the names of people who show interest or participate in the study. i am seeking adult volunteers (over the age of ) who are willing to talk about their experiences of coping with cancer and having a pet. this study will involve one face-to-face interview and a follow up consult by email or phone. the interview will be approximately two hours long, and within - months, you would be contacted to check the results by email or phone. participants will be invited to describe their relationship with their pets and the ways in which they have been a source of support and/or a nuisance. there will be a series of questions including “what does /did wellbeing mean to you in the context of having cancer?; what about your pet made you feel better emotionally, physically or mentally?; and what about your pet made feel worse in those ways?. some demographic information will be asked and all information will be kept strictly confidential. any and all questions, including biographical information, will be optional to answer. within a few months following the interview, a summary of the themes and findings of the researcher will be sent to you for review. you will be asked whether or not the themes represent your experience well and what you would like added or edited from the report. before the study is completed, it will be of utmost importance that each participant is comfortable with the findings and the way they are presented. you will receive a copy of the study when it is completed. the interview will be audiotaped and transcribed and given a code number to ensure that your identity remains anonymous. the total time will be approximately - hours within a three to six month period. any and all information that is gathered during the research process will be kept strictly confidential. all research documents will be kept in locked filing cabinet and only my supervisor, dr. marla buchanan and i will have access to the interviews. participants will not be identified by the use of names or initials, only by the code number. your participation in the study is entirely voluntary. you may refuse to participate in any section of the study and/or withdraw from the research at any time without prejudice of any kind. as a token of appreciation to you and your pet, each participant will receive a ten-dollar gift card for use at a reputable pet store. if you wish to participate in this study, or would like more information please contact me. you are welcome to leave me a confidential voice-mail message if i am not available, and i will return your call as soon as possible. the principal investigator for this project is my dissertation supervisor, dr. marla buchanan. she can be reached at the university of british columbia. thank you so much for your interest in the study. i look forward to working together with you. yours sincerely, patricia nitkin, m.a., ccc phd student university of british columbia counselling psychology program department of educational and counselling psychology, and special education appendix c recruitment email to colleagues and friends dear colleagues and friends, as some of you may know, i have begun recruitment for my dissertation research. i am investigating the experiences of people who have or had a pet while personally dealing with cancer. the study will explore the role a pet or companion animal may play for people who are coping with their own cancer diagnosis, treatment, and/or survivorship experiences. this research is part of my phd work in counselling psychology at the university of british columbia (ubc) and has been approved by the ubc research ethics board. as such, i am attaching the ubc ethics board certificate of approval. i am writing to you as some of you may know of people (clients, friends, family members) who may be interested in participating or finding out more about the study. in order to maintain confidentiality i am not to be informed of the names of any prospective participants who you provide this information to, and i, in turn, will not inform you of the names of people who make contact with me. i am attaching a "letter to prospective participants" as well as a flyer and poster with my contact information and a brief description of the research, and i respectfully ask that you forward this information to anyone you feel may be interested in participating. i am happy to provide any of you with hard copies of posters, letters to prospective participants and ubc ethics approval as needed. interviews can be held in participants' homes or at ubc, and all information will be kept strictly confidential. below is a little more about the study: i am interested in learning about the helpful and supportive aspects of having a pet during an illness experience, as well as what is challenging and difficult. so little is known about how pet companionship affects people during times of difficulty. it is my belief that the relationships that people have with their pets are poorly understood, and often both the negative and positive aspects are underestimated. i hope that the results of this study will contribute to a better understanding of what it is like to have a pet during times of personal adversity. the study will be conducted as qualitative research utilizing the enhanced critical incident technique (butterfield, borgen, maglio, & amundson, ). i also work as a part-time clinical counsellor at the british columbia cancer agency (bcca) and have spoken with many individuals who experienced both benefits and challenges from having a pet during their diagnosis and treatment. for ethical reasons, i cannot interview anyone i have worked with as a bcca patient and would not be able to provide counseling in the future to anyone who wishes to participate in the study. this research is being conducted as part of my student role at ubcand is not formally related to my work at bcca. i am seeking adult volunteers (over the age of ) who are willing to talk about their experiences of coping with cancer and having a pet. this study will involve one face to face interviews as well as a follow up consult. the interview will be approximately two hours long, and within - months, participants will be contacted to check the results by email or phone. participants will be invited to describe their relationship with their pets and the ways in which they have been a source of support and/or a nuisance. some demographic information will be asked and all information will be kept strictly confidential. any and all questions, including biographical information, will be optional to answer. within a few months following the interview, a summary of the themes and findings will be sent to participants for review. they will be asked whether or not the themes represent their experience well and what they would like added or edited from the report. before the study is completed, it will be of utmost importance that each participant is comfortable with the findings and the way they are presented. each participant will receive a copy of the study when it is complete. the interviews will be audio-taped and transcribed and given a code number to ensure that participants’ identities remain anonymous. the total time will be approximately - hours within a three to six month period. any and all information that is gathered during the research process will be kept strictly confidential. all research documents will be kept in locked filing cabinet and only my supervisor, dr. marla buchanan and i will have access to the interviews. participants will not be identified by the use of names or initials, only by the assigned code number. participation in the study is entirely voluntary. participants may refuse to participate in any section of the study and/or withdraw from the research at any time without prejudice of any kind. as a token of appreciation, each participant will receive a ten dollar gift card for use at a reputable pet store. if you would like more information please contact me. you are welcome to leave me a confidential voice-mail message if i am not available, and i will return your call as soon as possible. the principal investigator for this project is my dissertation supervisor, dr. marla buchanan. she can be reached at the university of british columbia. thank you very much for considering this study for those you know who may be interested. yours sincerely, patricia patricia nitkin, ma, ccc phd candidate university of british columbia counselling psychology program department of educational and counselling psychology, and special education appendix d informed consent form a place of mind the university of british columbia informed consent form “relationships between people with cancer and their pets” principal investigator: dr. marla buchanan, professor university of british columbia department of educational & counselling psychology, and special education co-investigator patricia nitkin, ph.d. student university of british columbia department of educational & counselling psychology, and special education this research is being conducted as part of the requirements for patricia nitkin for the doctor of philosophy (ph.d.) degree in counselling psychology at the university of british columbia. the results of this research will be included in a dissertation that will become a public document in the university library once completed. the results may also be published in appropriate academic and/or professional journals. purpose the purpose of this research project is to explore the experiences of people who have or had a pet while dealing with cancer. we would like to understand what about having a pet was helpful and supportive during the cancer experience, as well as what was challenging and difficult for you. procedures this study will involve one face to face interview and a follow-up discussion by email or phone. the interview will be approximately two hours long. participants will be asked to talk about what it is like to have a pet during an illness as well as describe what wellbeing means when one has cancer. following this, participants will be asked to describe what about having a pet contributed to a sense of wellbeing during the illness, and what about having a pet detracted from a sense of wellbeing. some demographic information will be asked including your age, gender, type of cancer, type of pet and cultural/ethnic background. this information will be presented in a separate table in the report. all questions are optional to answer. within three months following the interview a summary of the themes and findings of the researcher will be sent to you for review. participants will be asked whether or not the themes represent your experience well and if you would like anything added or edited. the interview will be audio-taped and transcribed and given a code number to ensure that your identity remains anonymous. the total time will be approximately - hours within a three to six month period. confidentiality any and all information that is gathered during the research process will be kept strictly confidential. all research documents will be kept in locked filing cabinet and only dr. marla buchanan and i will have access to the interviews. participants will not be identified by the use of names or initials, only by a code number assigned to each interview. the final report will use pseudonyms and avoid any details or information that could potentially identify an individual all questions in the interview are optional to answer, as we understand that any detailed information about a cancer diagnosis combined with type of pet owned may possibly identify a person. participants will have an opportunity to view the report in progress and comment on it before it is submitted. all information will be kept strictly confidential. compensation each participant will receive a ten-dollar gift card for use at a reputable pet store. contact for information about the study for any questions about the study’s purpose or procedures, please feel free to contact patricia nitkin or dr. marla buchanan. contact for concerns about the rights of research participants if you have any concerns about your treatment or rights as a research participant, you may contact the research subject information line in the ubc office of research services. consent your participation in the study is entirely voluntary. you may refuse to participate in any section of the study and/or withdraw from the research at any time without prejudice of any kind. your signature below indicates that you consent to participate in the study. your signature indicates that you have received a copy of this consent form for your own records. __________________________ ____________________ participant signature date printed name of the participant signing above the signature of a witness is not required for behavioural research. thank you for your willingness to participate in this study. appendix e interview guide date of interview: start & end times of interview: place of interview interviewee name: interviewer name: pet type and name: (please bring a photograph of your pet to the interview) overarching research question: • how does having a pet enhance and/or detract from a person’s sense of wellbeing during their cancer experience? interview phases • phase : contextualization a. tell me a little about your relationship with your pet and what he or she means to you? b. what is the meaning of wellbeing to you in relation to your cancer experience? • phase : helping and hindering factors • phase : wish list interview introduction: thank you for meeting with me. the reason we are meeting today is to talk about your experience of having a pet while you had/have cancer. i believe you can help me develop a better understanding of what it is like to have a pet during times of adversity, such as being diagnosed, treated, and/or living with cancer. i will be asking you some questions and respectfully request that you answer them in a way that you feel comfortable and open. please remember that there are no right or wrong answers. i am interested in your experience, which belongs to you, and only you and therefore can neither be right or wrong….some of the thing we discuss today may stir up some emotions for you. if, at any time, you feel you wish to take a break or stop the interview, please let me know. there are three sections of the interview. .- the first will be concerned with what it means to you to have a pet, and also what the idea of wellbeing during cancer means to you. . -the second set of questions will centre around two different components: things about having a pet that helped you achieve wellbeing during your cancer experience, and things about having a pet that hindered you during your cancer experience, and .- the third will be about what you might have wished your pet could have done for you during your cancer experience. during the interview i may stop to ask some questions or clarify something you have said, to ensure that i am understanding you to the best of my ability. at any time, if you have any questions, please feel free to ask me. any time you need a break, please let me know… as you know, i will be audiotaping the interview, and i welcome you to reach over and stop it at any time should you wish to take a break. (demonstrate use of recorder) does this sound all right with you? any questions before we begin? phase a. (introduction to photograph of pet) ..i am interested in your experience of having your pet. please share with me a little about them; can you tell me a little about how he/she came into your life…. …. …or tell me the story of your relationship with (pet’s name…) while you faced having cancer. b. as you know, a large reason for this study is to look at how your pet has impacted your emotional wellbeing during your cancer experience. i am interested in what that idea / concept means to you: “wellbeing” during cancer.. when you feel ready, we will move on to the next phase of the interview. please focus on your experience with your pet during your cancer diagnosis / treatment/ post-treatment. phase a. helping focus ~think of a time when (pet’s name) really helped you during your cancer experience (diagnosis, treatment, post- treatment – these will depend upon the interviewee). ~tell me exactly what about your relationship with your pet helped you and/or what (pet’s name) did to help you? in what ways did the relationship help you? ~what about (pet’s name) made you feel better, emotionally, physically, mentally or spiritually? ~any other times? b. hindering focus ~ think of a time when (pet’s name) really hindered you emotionally during cancer (diagnosis, treatment, post- treatment – these will depend upon the interviewee). ~ tell me exactly how your relationship with (pet’s name) made it difficult for you and /or what did (pet’s name) do to hinder you? in what ways did the relationship hinder you? ~ what about (pet’s name) made you feel worse emotionally, physically, mentally or spiritually? phase : wish list as you know, i am interested in what kinds of things or experiences may help people emotionally during their cancer experience. could you share with me perhaps, a wish list~ of what other things would have helped you emotionally during your cancer experience? final question is there anything else you would like to share about having (pet’s name) while you were dealing with your illness? closing thank you so much for your time and your interest in this study. within a few months, i will forward you the initial results of the study that came from this interview and ask for your feedback. it will be important that you agree on how what you have said today is reported and described. it is of utmost importance that you feel it reflects your experience as much as possible, so nothing will be published without your consent… i look very much forward to being in touch with you again. please feel free to contact me before then if you have any questions. appendix f demographics and biographical information all questions are optional age: gender: marital status: children: occupation: cultural background: country of birth: education background: history of pet ownership: type / site of cancer: treatment(s): date of diagnosis: date of last treatment: length of interview: appendix g participant check letter thank you so much for participating in the study and for your patience in receiving this report summary. as you may remember, the purpose of the study is to explore what about having your pets helped and hindered you in relation to your experience with cancer. this section of the research involves me presenting you a summary of the findings so that you can check them and see if: a) the categories and incidents make sense to you, (even if some of them may not have been reported by you) b) you are comfortable with any quotes of yours i am using for the report c) you feel that i accurately described you and your situation and pet relationship i am very interested in your feedback- it is in many ways the most critical part of the study. it is essential that i represent as closely as possible what you shared with me. if there is anything that feels wrong, doesn’t make sense, needs to be corrected or is missing, please let me know and i will change things for the final report. we can discuss any concerns or questions that you have over the phone or by email, as per your preference. please also remember that the purpose of the research was to explore what about having a pet made it easier and/or harder for you while you were facing cancer. the short personal accounts i have written about you in no way represent the depth and richness of the stories you shared with me. i apologize if i have left any significant information out. i hope the short story honours your experience and i will add or remove anything you wish. you and your pets have been assigned a participant # to protect your anonymity. please check the quotes with your participant # beside it. please also, at this point, do not share this information with anyone other than your significant other, as it must be checked by all participants before being shared. the package includes: . your information from the biographical table of participant information . your brief personal accounts- about your pets and your experience with cancer . the categories with a short description and the incidents (incidents refer to examples or factors that make up the category- they come right from the interviews) . any quotes of yours i am proposing to use. . he- refers to things that helped you about having a pet, and hi refers to things that hindered you about having a pet you are all welcome to attend my final university defense at ubc which will be held sometime this september or october- i will keep you posted and would be honoured to have you and any of your family members there. thank you so very much, patricia nitkin- technologically-enhanced psychological interventions for older adults: a scoping review research article open access technologically-enhanced psychological interventions for older adults: a scoping review f. vailati riboni * , b. comazzi , , k. bercovitz , g. castelnuovo , , e. molinari , and f. pagnini , abstract background: the world population is getting older. as life expectancy increases, traditional health care systems are facing different challenges in terms of cost reduction and high-quality service delivery capability. new ways to improve older adults’ quality of life have been explored, taking advantage of new technological solutions. our focus is on the integration of technology in clinical treatments to facilitate or deliver psychological interventions meant to improve well-being in older adults. our aims were to describe the main technology-based interventions supporting seniors’ quality of life or psychological well-being and to provide greater clarity to what is described in the current literature as their effects on seniors’ cognitive and psychological outcomes and healthcare policies. methods: we reviewed the scientific literature looking for studies that investigated how technology can be implemented into clinical psychology treatments for older adults. our search was conducted using the following databases: pubmed, psycinfo, scopus, isi web of science, and cinahl. the search provided articles, mostly (≈ %) dated after . abstract analysis narrowed the selection to papers, according to their relevance and actuality as judged by a restricted group of independent researchers. results: through a thematic analysis, we found that virtual reality (vr), robots, telemedicine, software, video games, and smartphone applications could potentially support older adults’ psychological treatment with a positive impact on healthcare systems. conclusion: findings from the literature are encouraging, although most of these results are only preliminary. keywords: older adults, aging, technology, psychological interventions, clinical psychology, healthcare background the world population is getting older, as life expectancy increases and the birthrate is lower than in previous de- cades. in the european union, the percentage of people and older will increase from . % in to a pre- dicted . % by [ , ]. worldwide, the population over years old is currently about million and ex- pected to reach two billion by [ ]. further relevant data comes from analyses conducted by the centers for medical and medicaid services, highlighting that % of the older adults have been diagnosed with a chronic condition [ ]. modern healthcare systems appear to be failing in the treating of chronic symptoms, with nega- tive long-term economic consequences [ ]. demographic changes require new strategies and new developments in terms of research dealing with well-being issues and quality of life maintenance in later life. as these changes in age seem to indicate, the problem of ‘adding years to life’ may become secondary to that of ‘adding life to years’ [ ]. the psychological empowerment of healthy older adults has received increased emphasis in the last © the author(s). open access this article is licensed under a creative commons attribution . international license, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the creative commons licence, and indicate if changes were made. the images or other third party material in this article are included in the article's creative commons licence, unless indicated otherwise in a credit line to the material. if material is not included in the article's creative commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. to view a copy of this licence, visit http://creativecommons.org/licenses/by/ . /. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated in a credit line to the data. * correspondence: f.vailatiriboni@gmail.com department of psychology, università cattolica del sacro cuore, milan, italy full list of author information is available at the end of the article vailati riboni et al. bmc geriatrics ( ) : https://doi.org/ . /s - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf http://orcid.org/ - - - x http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / mailto:f.vailatiriboni@gmail.com decade [ , ]. psychological interventions have been rec- ognized as being both clinically successful and cost- effective in the promotion of seniors’ well-being and mental health [ – ]. what appears to be still partially unexplored, however, is the potential of integrating new technologies into psychological initiatives for individuals in their later life. advanced technology innovation within the framework of senior care could be a possible solution to the negative effects of the worldwide aging process that actively addresses the challenges of an aging population [ , ]. many technological advances are deal- ing with health and social outcomes [ , ]. technolo- gies can support well-being in older adults in different ways. for example, encouraging different lifestyles [ ], providing non-invasive assessments [ ], and delivering distance interventions [ ]. technology that meets the needs of older adults is labeled gerontechnology, aimed at supporting successful aging in a way that encompasses the full range of human activities [ , ]. exploring and expending the suitable forms of technology-enhanced psychological interventions in older adults health care appears to be a promising strat- egy, given its potential to reach a high percentage of the population, to decrease the number of personnel re- quired to treat each patient, and to improve accessibility to efficient health care services [ , ]. the focus of the current review is the exploration of how new technologies have been used to enhance psy- chological interventions with older adults, to promote improved quality of life and psychological well-being. to assess the state of the art on technologically-enhanced psychological interventions for older adults, our scoping literature review will be addressing the two following re- search questions: . what are the main technology-based interventions supporting seniors’ quality of life or psychological well-being? . what are their effects on cognitive and psychological outcomes, and what is their potential economic impact? methods the current study has been developed as a literature scoping review, an increasingly adopted approach for reviewing evidence from health-related research [ ]. although the literature lacks one complete agreement on the definition or purpose of scoping reviews, most explanations addressed it as a research process with the specific objective of summarizing evidence to communi- cate “the breadth and depth of a field” [ ]. scoping re- views do not rigorously weigh studies quality, like systematic reviews [ ]. moreover, scoping reviews adopt broader research questions or inclusion/exclusion criteria, may not request extraction of the data and usu- ally present a higher qualitative vs quantitative results ‘discussion [ – ]. we screened the scientific literature, searching for pa- pers that included the use of some form of technology to improve or to deliver a psychological intervention, with a specific focus on the aging population ( +). differ- ent kinds of experimental studies were considered, includ- ing rcts, longitudinal designs and qualitative research. reviews were also included as a source of aggregated in- formation. our search was conducted through the follow- ing databases: pubmed, psycinfo, scopus, isi web of science, and cinahl. the searches included the follow- ing terms: (“older adults” or “ageing” or “aging” or “elderly”) and (“psychological interventions” or “clinical psychology” or “psychotherapy” or “counseling”) and (“technology” or “tech device” or “gerontechnology” or “e-health”). these terms were searched as keywords, titles, abstracts, and mesh. additionally, citation maps were examined and the ‘cited by’ search tools were used where available. unpublished works were not considered. study selection was guided by the researcher’s inclusion criterion for articles in which technology, in its various forms, was the only and exclusively used intervention on the older adult population (i.e. no additive face-to-face support). another inclusion criterion was the presence of specific psychological (i.e. well-being, anxiety, depression, loneli- ness) and cognitive outcomes (i.e. memory, attention, pro- cessing abilities), both in terms of prevention and health promotion targeted by technological intervention. a further inclusion criterion was the appearance of references to real economic or potential savings factors for the healthcare system. one more fundamental aspect was the replicability of the studies outside of an exclusively experimental con- text. all selected papers met the inclusion criteria, ex- cept for the economic-related criterium, which was considered an optional factor to better review the eco- nomic impact of the different interventions examined in the scoping review. prisma guidelines were followed, and the flow chart is shown in fig. . the first and second authors collabo- rated in the articles screening process, independently. when discrepancies emerged, the last author was con- sulted to obtain complete agreement. a total of re- cords was identified through the database searching using the keyword search listed above. after duplicates identification and removal, both abstracts and titles were analyzed, excluding irrelevant studies in line with the prior specified inclusion criteria. hundred and fifty full articles were then read entirely by the first, second and last author, and records were then cut out in the presence of any of the following vailati riboni et al. bmc geriatrics ( ) : page of exclusion criteria: irrelevant targeted population (popu- lation younger than years old), irrelevant techno- logical intervention (not exclusively technology-based intervention), irrelevant outcomes (absence of psycho- logical or cognitive outcomes directly targeted by the intervention), or irrelevant study type (studies focused on the description of technologies without a clear inter- vention on older adults). eighty articles were identified as appropriate for inclu- sion in the present review. data extracted were: study’s purpose, design, and methodology of the study, targeted population, form of technology reported, measured psy- chological and cognitive outcomes. when data extrac- tion was completed, a sub-sample of thirty papers was reviewed by the last author, ensuring data characteriza- tion’s validity. in line with arskey and o’malley guide- lines, a thematic content analysis approach was carried out to identify common and distinctive themes from each form of technology reported to improve or to de- liver psychological interventions to older adults, accord- ing to inclusion criteria [ ]. discovered themes were organized, discussed and theoretically classified by the authors to facilitate comparisons. accepted studies were classified by the different forms of the technology described. to avoid the risk of bias, categories were not predefined by the authors and the classification was entirely conducted retrospectively. results eighty articles were considered for this review. studies were labeled according to the characteristic of the differ- ent technology-based interventions supporting seniors’ quality of life or psychological well-being. through a thematic analysis, we classified the papers into six categories based on the technology addressed: . virtual reality (vr), . robots, . telemedicine, . smartphone apps, . software, . videogames. within each category, definitions and practical exam- ples are presented, describing the typical features of each approach, its strengths and its clinical value. a summary of their effects on older adults ‘cognitive and psycho- logical outcomes, as well as on healthcare policies will be addressed for each category. technological solutions to implement psychological interventions virtual reality virtual reality (vr) refers to an artificial environment, created with software, that resembles a ‘real’ environ- ment in some way [ ]. it is generally experienced fig. prisma flow diagram vailati riboni et al. bmc geriatrics ( ) : page of through sight and sound with the help of a computer. although research on this construct has been produced for decades, the use of virtual reality for the implementa- tion of psychological interventions has become very popular in recent years, with a significant increase in the quality of the studies and systems used [ – ]. previous studies, conducted with a general population, have sug- gested that a vr-implemented psychological protocol can be efficacious in treating a variety of psychological disorders and behavioral issues [ , , ]. available findings report benefits, after applying psychological in- terventions involving vr, in terms of prevention of age- related cognitive decline. for example, one study found that older adults who underwent intense six-month vr memory training, involving auditory stimulation and vr experiences in pathfinding, showed improvements in memory tests, especially in the long-term recall, in com- parison with those in a control group who demonstrated a decline [ ]. moreover, virtual reality training may exert a positive effect on motor balance. a research protocol has been proposed to test the hypothesis that treadmill training using virtual reality may improve gait and balance in older adults, people with mild cognitive impairments and people with parkinson’s disease [ ]. the study is currently ongoing. the application of vr to psychological interventions for the promotion of well-being in older adults seems promising and feasible, offering significant advantages over conventional treatments in terms of functionality, subject accessibility to a wider number of test or clinical stimuli, subject stimuli interaction, standardization of experimental treatments, treatments’ environmental manipulation possibilities and subjects’ safety condi- tions, although there is a need for a more controlled longitudinal study exploring the hypothesis [ ]. vr could be useful in reducing anxiety when coupled with cognitive-behavioral therapy (cbt), which uses traditional exposure techniques, because exposure therapy tends to be very effective in younger populations, but the creation of vivid/detailed mental images is some- times impaired in older adults, preventing successful treat- ment [ , ]. vr environments can supplement the lack of vivid images and memories, allowing the anxiety stimu- lus to be fully introduced in the therapeutic process [ ]. one common limitation of the vr intervention shared by the studies considered is the results ‘transferability to real- world abilities or daily living activities. older adults’ im- provements in the experimentally targeted outcomes are usually assessed with instruments that fail to allow a generalization of the results on a wider pattern of situation. a further limitation commonly described in the litera- ture deals with the side effects due to head-mounted vr devices [ ]. although this appears not to be specific to the older adult population, many studies have under- lined different issues such as nausea, headache or dis- orientation in vr users. finally, one more limitation often mentioned in the studies considered is related to the economic cost of vr [ , ]. however, techno- logical progress has already allowed the creation of vr devices accessible to a higher percentage of the popula- tion. unlike years ago, a full vr equipment (one com- puter, one head-mounted display, and one motion sensing input sets) can be bought for less than $ . concerning vr acceptance in clinical practice by psy- chotherapeutic staff, the literature suggests encouraging results, with data indicating that for an increasing per- centage of therapists, obtainable outcomes through vr devices overcome the possible costs of the devices them- selves [ ]. robots the rapid technological advancement of the last decades has produced robots not only for industrial production but also for dynamic interactions with humans [ ]. robots for psychological enrichment, designed to enter- tain, communicate, educate and rehabilitate, have been developed and tested. broekens ( ) proposes a double categorization of the robots most used today: re- habilitation robots and assistive social robots [ ]. those of the first kind are usually not communicative and con- centrate on the physical rehabilitation of the subject, while the second kind can support patients in basic duty promoting and increasing the level of independent living ability or those aiming to increase the patient’s level of psychological wellbeing. shibata and wada ( ) com- pare the development of this technology, which is quite common in japanese hospitals, to widely-used pet ther- apy [ ]. however, the presence of animals in elder care settings involves many risks: they could bite, may not ad- equately respect hygienic standards and require great at- tention, affecting both time and organizational resources [ ]. research presenting companion robots’ advantages for patients, in terms of brain function and stress hor- mone production, is encouraging [ – ]. most of these robots are designed to stimulate a positive emotional re- action in people. for that reason, various types of shapes have been developed, including humanoids, animals and other structures [ ]. from a methodological point of view, however, it is not possible to distinguish which of these shapes could potentially bring the most significant effect on the patient. in the studies considered, critical issues are limiting internal and external validity [ ]. the first thing to consider is that most of the experi- mental research in this field mainly uses a single form of robot, a seal-like called paro, in the absence of compari- son with other shapes [ ]. moreover, most the experi- ments take place in japan, within nursing homes, vailati riboni et al. bmc geriatrics ( ) : page of through experimental designs that are not able to signifi- cantly control possible intervening variables and out- comes that are difficult to interpret [ ]. interactive autonomous robots connect with people by using verbal and non-verbal communications [ , ]. they can process information and respond to stimuli with different levels of complexity. the robot most fre- quently used in this way is paro, a seal-like robot de- signed to stimulate feelings such as pleasure and relaxation [ ]. the responses that it provides when it interacts with people can be interpreted, on a behavioral level, as if the robot has feelings. on this basis, paro was used as an example of ‘robot therapy’, with a particular focus on the care of younger children and older adults [ ]. the presence of this robot at a day service center for older adults promoted a reduction in stress and de- pressive symptoms after weeks [ ]. moreover, similar results were obtained from long-term interaction, and caregivers reported that interaction with the robot helped older people to become more active and smile more [ , ]. concerning some of the effects presented in the paro-related literature, it must be highlighted that most positive outcomes seem to be significantly con- nected to the older adult’s baseline health condition. such as that better results can be expected in less se- verely affected participants [ ]. a few studies have shown further benefits, providing encouraging results in contrast to the hypothesis that ro- botic devices only focus on an emotional level, but can be used significantly as cognitive stimulators, optimizing both seniors’ interactivity and processing ability [ , ]. results from robotic psychological interventions are usu- ally described in terms of better or improved older adults related outcomes, like more efficient cognitive or neural functioning, improved anxiety coping abilities, or better quality of life [ ]. however, one limitation of some studies included in this scoping review, especially those dealing with older adults with dementia or mild cognitive impairment is that those observed positive outcomes often imply less decline, rather than real positive improvements [ – ]. one more limitation of the literature on robotic psy- chological interventions is the paucity of a randomized controlled trial comparing the effects of specific robots’ enhanced treatments with others involving regular psy- chological interventions [ – ]. more importantly, of those few published studies, some showed conflicting re- sults from the robot condition, with specific assessed outcomes measures appearing inferior [ , ]. in one study, the negative effects of the robot’s treatment on the older adult population, such as increased irritability or lability within the symptoms have been described [ ]. whether or not robots enhanced psychological in- terventions could be triggering anxiety or negative emotions in older adults need further and more con- trolled investigations. the use of robots in mental healthcare for older adults is an emerging field, underlying the crucial role those kinds of machines could have on different health care policy factors, such as experience, finance, capacity and quality [ ]. exploratory experiments suggest that there is a potential, at least in terms of acceptability and feasi- bility [ ]. robotic diffusion in clinical practice, however, still seems to be slowed down by the cost of production, although more and more specialized industries are work- ing on affordably-priced commercial robots. while this area is in constant development, it is open to new stud- ies and new possible applications. telemedicine telemedicine is usually defined as the exchange of med- ical information from one site to another using elec- tronic communications, aimed at improving patients’ clinical health status [ ]. it involves the use of technol- ogy to deliver care to a person that is remotely located from the provider; it can also assist with clinical decision-making [ ]. there are two main delivery sys- tems for telemedicine, one through the phone line and the other one via the internet (e.g., video chats, emails, text chats). most extant literature about telemedicine and older adults investigates the use of medical devices that constantly monitor the person’s biological data, fo- cusing especially on people with cardiovascular diseases and diabetes [ – ]. some of these monitoring activ- ities have been tested with people with dementia [ ], while other forms of distance support have been explored with their caregivers, aimed at reducing their burden [ ]. as observed by boaz and colleagues, telemedicine inter- ventions targeting biological outcomes may not be more efficient than other regular treatments [ ]. however, a positive impact on psychological variables such as well- being or quality of life could be more easily achieved. the remote monitoring of the patient’s care and health through telemedicine interventions could, offer a positive strategy to increase older adults’ sense of control over their health conditions. thus potentially showing positive repercussions on the psychological well-being of the older individual [ , ]. seniors’ attitude can be a hindrance to the acceptance and use of new technologies with which they are not famil- iar [ ]. it seems that positive and negative attitudes toward technology could be related to an active or passive role, re- spectively, that people have in the learning process [ ]. despite potential benefits in terms of assistance and inde- pendence, the current literature emphasizes some limita- tions in the application of telemedicine for older adults [ ]. that could be the reason for the paucity of experi- mental longitudinal research, especially when compared vailati riboni et al. bmc geriatrics ( ) : page of with the number of feasibility and pilot studies that are car- ried forward over time, becoming widely used and adopted systems [ , ]. consumers’ perception of benefits has been described as one of the most influential barriers to acceptance within the senior population, while convenience and daily activity integration possibilities identified as other mediating variables [ ]. as jimison suggests, strategies aimed at increasing older people’s active engagement with telemedicine could lead to significant positive treat- ment outcomes and high acceptance levels [ ]. tele- medicine is considered to have great benefits for both primary and secondary care [ ]. experiments con- ducted on older people have shown promising results. spek and colleagues [ ] reported that an internet-based cognitive behavioral self-help intervention could de- crease depression in a sub-clinical population of older adults, with results that persisted for over a year [ ]. titov and colleagues examined the efficacy of an internet-based cognitive-behavioral therapy (cbt) pro- gram for older adults with anxiety [ ] or depression [ ], which is structured over weeks and includes on- line lessons, homework activities and distant interaction (email or phone calls) with a therapist. in both cases, the program demonstrated good efficacy in symptom reduc- tion compared to a waitlist control group. the treatment was also effective in terms of costs and impact on their quality-adjusted life years [ , ]. some studies have in- tensively analyzed the benefits of adopting telemedicine in terms of clinical results and cost-efficacy. for ex- ample, the veterans health administration (vha) has achieved important results introducing a telemedicine program for their patients. they were able to reach up to , subjects, generating savings of about $ per patient per year. at a clinical level, % of the vet- erans treated with telemedicine were able to increase their independent living level [ ]. hospitalizations de- creased by % and in-care treatment decreased by % [ ]. in another telemedicine program, conducted at partners health care, subjects were treated with in-home monitoring technology, so that factors such as blood pressure, heart rate, and weight were always under daily direct control. the data collected highlighted a % reduction in hospital readmission, generating a cost reduction of up to $ million in years [ ]. as these studies suggest, these positive outcomes could be more easily achieved when specific elements overcoming pos- sible arising senior population barriers are considered. direct and easily accessible feedback on the patient’s sta- tus or a personalized data interpretation based on the patient’s treatment goals and its treatment’s adjustments overtime should always be guaranteed [ ]. another form of telerehabilitation can be seen within the large field of smart home research. smart home systems enable individual possibilities of living in their own chosen environment, preventing them from institutionalization or nursing home assignment [ ]. sensors can be applied and located in different places in people’s apartments or houses, managing and monitor- ing risky situations. different kinds of sensors, such as smoke detectors, flood detectors, motion sensors, auto- matic controllers, alarms or visitor identification systems are already being tested with promising results [ ]. soft- ware services are also a component of the smart home en- vironment. the benefits of this tech application can be synthesized in the promotion of healthier lifestyles for se- niors, monitoring caloric intake, vital signs or sleep pat- terns. the information gained from the smart home environment can help seniors to monitor basic tasks (such as getting dressed and walking around) and instrumental activities (such as telephone calls and web use) in their daily lives while capturing deviations from regular patterns of physical or cognitive well-being [ – ]. by allowing older people to stay in their own houses longer, smart home technology can potentially represent substantial sav- ings for the healthcare system [ ]. one study from the university of missouri calculated how by introducing smart home technologies in seniors’ houses, individuals could benefit from more time in their own place, delaying the need for retirement homes with economic savings to medicaid of nearly $ , [ ]. a fundamental limitation factor of smart home technolo- gies can be seen in the technology readiness of the older adult population. although individuals in their later life are now more engaged in technology innovation, some studies published and considered for this scoping review have been conducted in artificial environments, making generalizations of the results still not clinically valid [ ]. software, video games, and smartphone apps together with internet-based programs that can deliver a psychological intervention, other technologies can sup- port psychological treatment using a personal computer, such as software, video games, and smartphone applica- tions. according to kueider, a theoretical classification could be made regarding the type of computerized soft- ware used: classic cognitive tasks, neuropsychological software and video games [ ]. significant evidence from the literature suggests that these kinds of technology in- terventions, aimed at improving older adults’ well-being, can enhance their cognitive performance, with signifi- cant outcomes’ effects up to years post-intervention [ , ]. despite common age-related stereotypes con- nected with seniors facing and handling new technolo- gies, most older adults, after reporting increasing anxiety levels at the beginning of the experimental training, showed significantly increased satisfaction and a higher internal locus of control [ ]. to ensure a positive vailati riboni et al. bmc geriatrics ( ) : page of experience of these technologies by older users, a pos- sible solution could be achieved by demystifying stereo- types and prejudices regarding aging and seniors’ technology skills. at the same time, special attention must be paid when exposing older adults to new tech- nologies, with professionals trained to improve older subjects’ experience while at the same time providing senior-friendly guidelines [ – ]. several programs have been developed, although few have been systematically tested using a scientific ap- proach [ , ]. one of these is the butler system, devel- oped and tested by a spanish research team [ ]. this is a technological platform that provides three main appli- cations for older adults: diagnosis (mood monitoring, alert system, management reports), therapy (training in inducing positive moods, memory work), and entertain- ment (email, chat, video, photo albums, music, friend forums, accessibility to the internet). this program can serve as a base for the delivery of different interventions. an example is the implementation of a life-review ther- apy. preschl and colleagues [ ] explored the effects of a six-week life-review therapy protocol in a face-to-face setting with additional computer use, provided by the butler system. depressive symptoms decreased signifi- cantly over time in the intervention group compared to the waitlist control group, suggesting the strong poten- tial for this technology’s application. there is also a growing literature about the use of video games with older adults. the applications of these games are mainly on a cognitive stimulation level [ , ]. a recent meta- analysis [ ] suggested that video game training may moderately enhance the cognitive functioning of healthy older adults, producing positive effects on memory, at- tention, reaction time and global cognition. to maintain these benefits, it also seems important to continue using the games, as the effects of the training tend to decrease when not followed by other sessions [ ]. some of the advantages of using video games to improve older adults’ cognitive functioning are that they are not expensive and that they can be gratifying and fun [ ]. a trial involving the use of a real-time strategy game has shown that older people have experienced an increase in executive function and switching between task sets ability. it is of great importance to emphasize that there may be, there- fore, a strong correlation between this kind of treatment and improvements in the executive functions, since these functions are linked to a well-functioning frontal lobe, greatly influenced by the ageing process [ ]. smartphone apps are changing the way health can be promoted in every part of society, including in the older adult population [ , ]. possible applications include acquiring health information, personal disease preven- tion and healthy living, self-diagnosis using built-in sen- sors, and medication compliance promotion [ ]. there are mental health apps, such as stress management or relaxation apps, which have the potential to be effective and may significantly improve treatment accessibility [ , ]. this, however, is a brand new research field, which lacks solid evidence [ ]. most of the studies in the literature seem to highlight a wild range of positive results, this could, however, be explained by publication bias in favor of those papers that include significant positive outcomes. one of the studies included in the present scoping review has not shown any positive or significant statistical improvements in the psychological factors targeted with a mindful based smartphone appli- cation for older adults [ ]. in our opinion, a limitation of many studies could be represented by the kind of older adult sample used. factors like the level of educa- tion, attitudes towards technology or previous know- ledge and skills with apps or smart devices are rarely considered within the analysis measuring treatment’s ef- fectiveness [ ]. unexplored social or personal variables could prove to be important mediators in this kind of technological intervention. discussion considering the increasing rate of chronic disease and related issues within the senior population, the need for alternative or improved care and welfare solutions is crucial. while some new studies are exploring the effects of a return to the past [ ], the exploration of how current and future technologies can promote healthy aging is relentant. in particular, gerontechnology and e- health interventions for the elderly represent a promising approach for mental health promotion [ ] and poten- tially helpful instruments for the delivery of psychological interventions. examples and research listed in the present article are not meant to fully cover the field of ‘psycho- technology’ applications, but rather to provide a broader vision on how technology tolls are considered by health- care clinicians and policymakers, given their encouraging outcomes extending psychological treatment to a larger population, improving the quality of care while reducing both individual and national expenditure and significantly correlating with important variables such as patient and provider satisfaction [ ]. developing and adapting care systems to digital health technologies could potentially improve convenience as well as research outcomes [ ]. health innovation is still a long-term process. today’s care systems appear unequipped to deal with the mismatch between demand for and supply of health care providers. technologically-enhanced psychological interventions can support the creation of a modern and suitable model of healthcare, improving accessibility and quality while de- creasing costs. these hoped-for changes could also increase the effectiveness of the treatments already available while fi- nally putting patients in a central and active role by vailati riboni et al. bmc geriatrics ( ) : page of enabling them to participate directly in their own care [ , ]. with the possible exception of telemedicine and vr, however, further research in this field is warranted. most of the experimental contributions do not compare the inter- vention with an active treatment group. studies that investi- gate the effects of different media for the delivery of psychological interventions exist in telemedicine [ ], but they are rather uncommon when considering other tech- nologies. there are cultural and social variables that are ex- perimentally underestimated [ ], which may challenge the internal and external validity of most studies. seniors’ learning capability with specific technologies appears to be so influenced by cultural variables, such as level of educa- tion, previous work experience, and socioeconomic status. in our opinion, integrating more sub-group analysis in technology research ‘protocols could add greater clarity regarding the role of participants characteristic on the po- tentially assessed outcomes. this simple strategy could help to address the issue of the role of those variables on technology interventions and acceptance by older adults. cross-cultural studies and research that investigates the role of these mediators are also needed for a significant generalization of the current results. the main theoretical models used when considering seniors’ technology acceptance or barriers, the technol- ogy acceptance model (tam) and the unified theory of acceptance and use of technology (utaut), have recently been criticized by researchers as they appeared to be missing significant community-dwelling predictor variables [ ]. in line with peek suggestions, we believe that a possible solution could be achieved by including six specific themes: independent living related chal- lenges, behavioral options, individual thoughts on tech-usability, individual social network influences, organizational influences and the role of the physical environment [ ]. moreover, a possible significant strategy for integrating technology in the daily lives of older people could be to act directly on age-related stereotypes, as numerous studies have shown that the role played by stereotypes is of fundamental importance. although this appears to be a difficult solution, multidis- ciplinary approaches that directly involve health policies could offer significant results [ – ]. evidence from the present scoping review offers greater insights on the best practice or barriers of the different technology adoption. a first factor to be con- sidered should be the proper choice of assessment tools to be used in any technological interventions. given the difficult process of results generalization to real-world or daily living activities, researchers should move from an efficacy oriented focus towards a more routine-care effectiveness one. efforts to increase studies ecological validity could provide more clinical relevance and ad- dressed this first limit. a second relevant key factor emerging from the papers reviewed concerns those side-effects potentially related to the different technologies. researchers interested in integrating new technologies in their psychological ini- tiatives should, therefore, pay close attention to the older individual preparation before attempting any treatment. strategies to empower older adults’ readiness with the new technological tools should be implemented before moving to any treatments. as most of the studies in this review seem to indicate, older adults’ acquisition of the different technology-related skills plays a significant role in terms of intervention ‘efficacy. overall, evidence for technological-enhanced psycho- logical treatments remains at an early stage. trials ‘methodological quality is still not sufficient, with regards to sample size, randomizations, presence of follow-up and statistical approach used. over the next years, many of the current limitations described in the current paper are likely to be addressed. a more accur- ate perspective on the true potential of those different technology tolls in the psychological promotion of older adults’ well-being is hopefully soon to be reached. the application of advanced technology to psycho- logical and behavioral programs for older adults has been recognized as a promising solution for many issues, including depression, anxiety and mild cognitive impair- ment [ , , ]. we believe that the application of technological devices in psychological treatment could be considered by clinicians and researchers in their ac- tivities according to their level of experience and the specific need of patience. research in this field, however, is still in its infancy [ ]. conclusion we presented a scoping review of the different forms of technology adopted to improve or to deliver a psycho- logical intervention to older adults. we qualitatively assessed existing good practices, through concrete exam- ples collected in the literature, and outlined how tech- nology adoption could deal with cost-related problems arising in the health care system. six broad categories of technology have been identified in this study. findings suggest how different technology could be used to assess a variety of older adults ‘conditions, with promising re- sults. given the scoping nature of this study, future sys- tematic or meta-analytic works might concentrate on the topic, to empirically compare the effectiveness of those forms of technology in health care and health- related policy. abbreviations nia: national institute on aging-alzheimer’s association; cbt: cognitive behavioral therapy; vr: virtual reality; tam: technology acceptance model; utaut: unified theory of acceptance and use of technology; vha: veterans’ health administration vailati riboni et al. bmc geriatrics ( ) : page of acknowledgements not applicable. authors’ contributions f.v.r., b.c., k.b., g.c., e.m. and f.p. collaborated on the present review. f.p. and f.v.r. developed the concept of this review. all authors have read and approved the manuscript in its current state. funding authors were supported by the d . grant program (università cattolica del sacro cuore di milano) to complete this work. availability of data and materials all data and material are listed in the article. ethics approval and consent to participate not applicable. consent for publication not applicable. competing interests authors declare that they have no competing interests. author details department of psychology, università cattolica del sacro cuore, milan, italy. irccs santa maria nascente, fondazione don gnocchi, milan, italy. department of psychology, harvard university, cambridge, ma, usa. istituto auxologico italiano irccs, psychology research laboratory, piancavallo, verbania, italy. received: june accepted: may references . rechel b, grundy e, robine j-m, cylus j, mackenbach jp, knai c, et al. ageing in the european union. lancet. ; ( ): – . https://doi.org/ . /s - ( ) -x. . kil k, gollamudi ss, 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vanderloo, l.m.; hung, r.; ryce, a.; mckellin, w.; miller, a.; collet, j.-p. impacts of participation in community-based physical activity programs on cognitive functions of children and youth with neurodevelopmental disabilities: a scoping review. brain sci. , , . https://doi.org/ . / brainsci academic editor: james brasic received: december accepted: february published: february publisher’s note: mdpi stays neutral with regard to jurisdictional claims in published maps and institutional affil- iations. copyright: © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (https:// creativecommons.org/licenses/by/ . /). department of pediatrics, university of british columbia, vancouver, bc v h b , canada; mgitimoghaddam@bcchr.ca (m.g.); amiller@cw.bc.ca (a.m.) bc children’s hospital research institute, vancouver, bc v z h , canada department of knowledge translation, participaction, toronto, on m s m , canada; lvande @uwo.ca child health evaluative sciences, the hospital for sick children, toronto, on m g a , canada faculty of science, university of british columbia, vancouver, bc v t z , canada; rebecca.hung@ubc.ca sunny hill health centre for children, vancouver, bc v h n , canada; andrea.ryce@cw.bc.ca department of anthropology, university of british columbia, vancouver, bc v t z , canada; w.mckellin@ubc.ca * correspondence: jcollet@bcchr.ca abstract: this review paper aimed to undertake an extensive exploration of the extent, range, and nature of research activities regarding the effect and emerging evidence in the field of physical activity interventions on cognitive development among children and youth ( – . years) with neurodevelopmental disorders (ndd), and to help identify key gaps in research and determine precise research questions for future investigations. to carry out this scoping review, five electronic databases were searched. a total of , articles were retrieved via search efforts with an additional articles identified from the identified review papers. sixty articles were eligible for inclusion. the results of this scoping review revealed many positive key cognitive outcomes related to physical activity including, but not limited to: focus, attention, self-control, cognitive process, and alertness. no studies reported a negative association between physical activity and cognitive outcomes. based on the findings from this scoping review, physical activity appears to have a favorable impact on the cognitive outcomes of children and youth with ndd. keywords: physical activity; cognition; neurodevelopmental disorders; children and youth . introduction the prevalence of neurodevelopmental disabilities (ndd) among children continues to grow. in the united states and canada, approximately – % of the pediatric popu- lation ( – years) is diagnosed with ndd [ ] including attention-deficit/hyperactivity disorder (adhd), autism spectrum disorder (asd), cerebral palsy (cp), development coordination disorder (dcd), or fetal alcohol spectrum disorder (fasd), to name a few. ndd are widely defined as a “group of congenital or acquired long-term conditions that are attributed to impairment of the brain and/or neuromuscular system and create func- tional limitations” [ ]. the impairments and dysfunctions associated with ndd are usually associated with significant consequences for children, families, and society [ – ]. physical activity provides numerous health benefits for children [ , ]. due to physical and psychosocial limitations, children with ndd are often less active than their typically developing peers. less frequent participation in physical activity may manifest as missed opportunities to positively impact various health outcomes including the development of motor skills, social learning, and mental wellness [ – ]. families of children with ndd often report the desire to identify community-based physical activity programs brain sci. , , . https://doi.org/ . /brainsci https://www.mdpi.com/journal/brainsci https://www.mdpi.com/journal/brainsci https://www.mdpi.com https://orcid.org/ - - - https://doi.org/ . /brainsci https://doi.org/ . /brainsci https://creativecommons.org/ https://creativecommons.org/licenses/by/ . / https://creativecommons.org/licenses/by/ . / https://doi.org/ . /brainsci https://www.mdpi.com/journal/brainsci https://www.mdpi.com/ - / / / ?type=check_update&version= brain sci. , , of aimed at stimulating cognitive development and improving self-control, autonomy, social integration, and quality of life. while this type of program has been found to be associated with a range of benefits for children, variations in research design, populations studied, intervention type, and outcomes measured have made determining the true effects of this type of program difficult. to our knowledge, no in-depth review has been conducted to explore the existing literature regarding the multiple types of community-based physical activity programs for children with varieties of ndd, and the different types of outcomes studied. a scoping review of the literature was conducted to examine the impact of physical activity on the cognitive function of children with ndd, identify the most promising interventions, and clarify existing gaps and inconsistencies in the literature. more specifically, this manuscript aimed to: (a) investigate the extent, range, and nature of research activities regarding the effect and emerging evidence in the field of physical activity interventions on cognitive development among children and youth with ndd, and (b) help identify key gaps in research and determine precise research questions for future investigations. collectively, this information will also help to determine the value of conducting further systematic reviews and meta-analyses. . materials and methods according to colquhoun et al., “a scoping review is a form of knowledge synthesis that addresses an exploratory research question aimed at mapping key concepts, types of evidence, and gaps in research related to a defined area or field by systematically searching, selecting, and synthesizing existing knowledge” (p. , [ ]). guiding documents by tricco et al. [ ] were utilized for direction. a health research librarian with expertise in literature reviews (a.r.) provided guidance at all stages of this review. . . search strategy the following electronic databases were searched: pubmed, medline (ebscohost), cinahl, psycinfo, and eric (education resources information center). search terms representing physical activity or specific activities such as exercise, recreation therapy, physical activity, and sport were combined with search terms representing ndd or specific conditions such as neurodevelopmental disorders, cerebral palsy, intellectual disability, autism spectrum disorder, and fetal alcohol spectrum disorder. controlled vocabulary was incorporated into the search strategy to increase the breadth and relevance of the articles retrieved. the searches were limited by date from to . no limits were set on type of publication. only english language articles were included. see appendix a for a search strategy for each database. . . selection criteria we used “population” and “intervention” criteria of pico (population, intervention, comparison, outcome) to guide the selection of articles for this scoping review. we did not use “outcome” since it was one objective of our scoping review to identify the measured outcomes. we also did not use “comparison” as we did not want to limit the scope of our review by this restriction. articles were eligible for inclusion if they focused on children and youth aged – . years with ndd (e.g., adhd, asd, cp, fasd, dcd, intellectual disabilities, etc.). we adopted a non-categorical approach that focuses on children’s needs rather than disease category. when parents decide to send their child to a physical activity program in the community, they share the same need, whatever the disease. therefore, we did not try to identify how the diagnosis of disease was made in the different studies we analyzed in the scoping review. all types of physical activity programs were of interest (e.g., sport, exercise, physical activity, equine-assisted therapy, dance, music, leisure, etc.) as long as they were offered in the context of community-based programs. outcomes were not pre-specified in order to identify all outcomes used in different studies. medically based rehabilitation programs (e.g., physiotherapy or occupational therapy) were brain sci. , , of excluded because they are attached to a specific domain of practice; although effective, these interventions are limited by their domain-specific boundaries. for instance, therapeutic sessions are provided individually, which limits the child’s interactions with other children. in addition, studies with an intervention duration of less than four weeks were excluded as they were unlikely to have long lasting effects; furthermore, these short programs are often offered in the context of holiday camps and the whole special context makes it difficult to identify the effects of physical activity from the broader effects of attending the camp. primary research studies and dissertations were included: books, letters to the editor, commentary, and protocol papers were not included. for review papers, their selected articles have been screened and relevant papers have been selected for our scoping review. . . screening process and study selection figure outlines the screening process. once the articles were identified and retrieved from the online databases and the selected articles from review papers were added, all documents were exported to refworks (a reference management software). duplicates were manually removed using the referencing software. using the pre-established selection criteria, the titles and abstracts of all retrieved articles were reviewed by two independent researchers. retained papers were then reviewed in full by the same two independent researchers for inclusion in the review. in instances of disagreement between two reviewers (less than % of papers), a third reviewer was brought in as a mediator. brain sci. , , x for peer review of figure . prisma flow diagram: identification, screening, eligibility, and inclusion of studies. . . data extraction and synthesis once the full set of included articles was ascertained, the key findings of each paper were mined and presented in a standardized extraction table. extracted data included: general study information (author, year of publication, country, study design), study aim, population (including sample size), setting and duration, description of exposure, out- comes of interest, measurement tools, and key findings. data were synthesized for each study outcome as “improved”, “no change”, “regres- sion”, or “mixed” depending on the findings of the paper. to the best of our abilities, findings were grouped based on age, gender, type of ndd, and type of physical activity exposure. . results . . identified studies figure outlines the studies identified at each stage of the screening process. a total of , articles resulted from the initial search, with an additional articles identified from the identified review papers. upon removal of duplicates, potentially eligible articles remained. citations were screened first by title and abstract. of the articles that made it to the full-text screening, were subsequently removed as they did not meet the eligibility criteria (e.g., did not focus on the health outcome of interest, incorrect age, not published in english language, etc.). a total of studies were deemed eligible for inclusion in this review. figure . prisma flow diagram: identification, screening, eligibility, and inclusion of studies. brain sci. , , of . . data extraction and synthesis once the full set of included articles was ascertained, the key findings of each paper were mined and presented in a standardized extraction table. extracted data included: general study information (author, year of publication, country, study design), study aim, population (including sample size), setting and duration, description of exposure, outcomes of interest, measurement tools, and key findings. data were synthesized for each study outcome as “improved”, “no change”, “re- gression”, or “mixed” depending on the findings of the paper. to the best of our abil- ities, findings were grouped based on age, gender, type of ndd, and type of physical activity exposure. . results . . identified studies figure outlines the studies identified at each stage of the screening process. a total of , articles resulted from the initial search, with an additional articles identified from the identified review papers. upon removal of duplicates, potentially eligible articles remained. citations were screened first by title and abstract. of the articles that made it to the full-text screening, were subsequently removed as they did not meet the eligibility criteria (e.g., did not focus on the health outcome of interest, incorrect age, not published in english language, etc.). a total of studies were deemed eligible for inclusion in this review. . . description of included papers the publication dates ranged from to , with most of the articles published in the united states followed by the united kingdom and conducted mostly in the us followed by taiwan. table summarizes the studies included in this review. the mean sample size was children (standard deviation (sd) + . ) and ranged from to ; about % had a sample size less than . the majority of studies ( . %) focused on the age group of – years, followed by – years ( . %), and – years ( . %). most papers ( . %) either included male participants only, or more than % of their participants were male. this was followed by both male and females ( . %), and not stated ( %). none of the studies included only females as their participants. the child’s neurodevelopmental diagnosis type varied across studies, with the vast majority focusing on adhd ( . %) and asd ( . %). duration of physical activity interventions averaged weeks (sd + . ) with about % being less than weeks. accordingly, the average study duration was . weeks (sd + . ) and about % of the studies had a duration of less than weeks. there was much variability in study designs: . % were randomized controlled trials (rcts), . % were quasi-experimental, followed by . % prospective cohort studies, . % single-subject studies, . % qualitative designs, % case studies, . % cross-sectional studies, and . % retrospective cohort studies. type of exposure also varied including physical activity and exercise ( . %), equine-assisted therapy/hippotherapy ( . %), yoga ( . %), sport ( . %) as the most frequent ones, followed by aqua therapy ( %), martial arts ( . %), active video games ( . %), and dance ( . %). see table for additional details on each included study. brain sci. , , of table . summary of study characteristics. study design sample size age group * gender ** pd activity type and setting sd diagnosis results (positive [+], negative/no change [−], mixed [−/+]) ahmed et al. ( ) [ ] rct – male and female exercise (included upper limb, lower limb, trunk, and neck aerobic exercises in addition to free running) setting: school and home adhd (+) attention alesi et al. ( ) [ ] single subject study design – male and female exercise (integrated group exercise training with goal setting) setting: not mentioned down syndrome (−/+) working memory (+) alertness and speed bass et al. ( ) [ ] quasi- experimental – male and female equine-assisted therapy setting: good hope equestrian training centre asd (+) attention borgi et al. ( ) [ ] rct – male equine-assisted therapy setting: equine-assisted therapy center asd (+) planning bowling et al. ( ) [ ] rct – male and female exercise (cybercycling during physical education classes) setting: school behavior disorders (+) self-regulation bustamante et al. ( ) [ ] rct – male and female exercise (physically active games and modified sports) setting: school disruptive behavior disorders and adhd (+) cognitive control (+) working memory (+) cognitive flexibility chambers et al. ( ) [ ] single subject study design – male and female exercise (short-burst high-intensity physical exercise such as lunges, side jumps, and chinese push-ups) setting: school adhd (+) working memory (+) attention brain sci. , , of table . cont. study design sample size age group * gender ** pd activity type and setting sd diagnosis results (positive [+], negative/no change [−], mixed [−/+]) chang et al. ( ) [ ] quasi- experimental – male and female aqua therapy setting: local swimming pool not stated adhd (+) response inhibition choi et al. ( ) [ ] rct – male exercise (aerobic exercises consisted of running (shuttle run, zigzag run), jumping rope (individual and group jumps), and basketball (dribble, pass, shoot, and game) setting: not mentioned adhd (+) cognitive flexibility (+) attention chou et al. ( ) [ ] quasi- experimental – male and female yoga setting: dance studio adhd (+) attention cleary et al. ( ) [ ] qualitative students: – students: male and female exercise (included indoor activities (such as treadmill, stationary bicycle, stepping machine) and outdoor activities (such as running, sprinting drills, or cycling in the school grounds) setting: school students’ diagnosis: cerebral palsy (+) attention cuypers et al. ( ) [ ] quasi- experimental – male equine-assisted therapy setting: riding school adhd (+) attention gabriels et al. ( ) [ ] rct – male and female equine-assisted therapy setting: riding centre asd (+) self-regulation gabriels et al. ( ) [ ] quasi- experimental – male and female equine-assisted therapy setting: colorado therapeutic riding centre asd (+) self-regulation garcia-gomez et al. ( ) [ ] quasi- experimental – male and female equine-assisted therapy setting: monfragüe equestrian centre of cáceres not stated adhd (−) attention brain sci. , , of table . cont. study design sample size age group * gender ** pd activity type and setting sd diagnosis results (positive [+], negative/no change [−], mixed [−/+]) garcia-gómez et al. ( ) [ ] quasi- experimental – male and female equine-assisted therapy setting: monfragüe equestrian centre of cácere asd (−) attention garg et al. ( ) [ ] prospective cohort study – male and female yoga setting: classroom multiple handicap- ping conditions, develop- mental disabilities, or asd (+) self-regulation (+) attention grönlund et al. ( ) [ ] quasi- experimental – male dance setting: clinic adhd (−/+) attention hariprasad et al. ( ) [ ] prospective cohort – male yoga setting: child psychiatry unit adhd (+) attention hartshorn et al. ( ) [ ] quasi- experimental – not stated exercise (involved using hoops and jumping in and out of them, putting different body parts in and out of the hoops, following the therapist through an obstacle course of different shape and different height gym mats, and moving to a tambourine and stopping when the tambourine stopped) setting: not mentioned asd (+) attention hilton et al. ( ) [ ] quasi- experimental – male and female exergame setting: clayton child centre asd (+) working memory (+) alertness and speed brain sci. , , of table . cont. study design sample size age group * gender ** pd activity type and setting sd diagnosis results (positive [+], negative/no change [−], mixed [−/+]) hulls et al. ( ) [ ] cross- sectional occupational therapists children: – children: not stated activity type: aqua therapy setting: not mentioned not stated asd (+) attention jang et al. ( ) [ ] quasi- experimental – male equine-assisted therapy setting: equine facility adhd (+) attention jenkin et al. ( ) [ ] quasi- experimental – male equine-assisted therapy setting: reserved are at a riding facility asd (−) cognitive control(−) attention(−) language jensen et al. ( ) [ ] rct – male yoga setting: westmead hospital adhd (−) attention johansson et al.( ) [ ] retrospective cohort – male exercise (physical education) setting: pacific northwest program social and emotional problems (+) academic achievement kaiser et al. ( ) [ ] prospective cohort – male and female equine-assisted therapy setting: chum riding therapeutic centre cerebral palsy, emotional impairment, learning disability (+) attention kang et al. ( ) [ ] rct – male sport (sport therapy program) setting: department of psychiatry of chung ang university medical centre asd (+) attention lawson et al. ( ) [ ] single subject study design – male yoga setting: the preschool and language stimulation program school speech and develop- mental delay, behavioral problem, adhd (+) attention brain sci. , , of table . cont. study design sample size age group * gender ** pd activity type and setting sd diagnosis results (positive [+], negative/no change [−], mixed [−/+]) lufi et al. ( ) [ ] quasi- experimental – male sport (sport-based group therapy such as basketball and running) setting: not mentioned behavioral disorders (+) attention macauley et al. ( ) [ ] prospective cohort – male hippotherapy setting: merlin farms equestrian center learning disability (+) language mackinnon et al. ( ) [ ] rct – male and female equine-assisted therapy setting: therapeutic riding program cerebral palsy (−) attention macmahon et al. ( ) [ ] rct – male the aerobic group’s exercise consisted of distance running, aerobic dance, and variants of soccer setting: not mentioned learning disability (−) academic achievement majorek et al. ( ) [ ] case series – male exercise (therapeutic eurythmy-movement therapy) setting: therapy rooms of a pediatrician’s surgery adhd (+) attention mckune et al. ( ) [ ] quasi- experimental – male and female exercise (included activities such as relay runs, simple plyometric exercises, running through a mini obstacle course, a distance run of – km, and skipping) setting: home adhd (+) attention memarmoghaddam et al. ( ) [ ] rct – male exercise (aerobic and goal directed exercises) setting: university sports hall adhd (+) cognitive inhibition milligan et al. ( ) [ ] qualitative youth: – youth: male and female martial arts setting: child development institute learning disability (+) self-regulation morand et al. ( ) [ ] rct – male martial arts setting: martial arts school adhd (+) academic performance (+) attention brain sci. , , of table . cont. study design sample size age group * gender ** pd activity type and setting sd diagnosis results (positive [+], negative/no change [−], mixed [−/+]) neely et al. ( ) [ ] case study – male and female exercise (jumping on an indoor trampoline) setting: classroom asd (+) academic engagement nicholson et al.( ) [ ] single subject study design – male exercise (jogging) setting: classroom asd (+) academic engagement o’callaghan et al. ( ) [ ] rct – male and female sport (kickball) setting: campus of a large public university adhd (+) attention ozer et al. ( ) [ ] rct – male sport (soccer) setting: soccer field intellectual disability (+) attention ozer et al. ( ) [ ] rct – male and female aqua therapy setting: swimming pool cerebral palsy (+) attention packard et al. ( ) [ ] prospective cohort – male and female exercise (vigorous aerobic physical activity) setting: school adhd (+) attention pan et al. ( ) [ ] rct – male exercise (motor and movement skills related to table tennis) setting: gymnasium asd (+) cognitive flexibility pan et al. ( ) [ ] rct – male sport (racket sport) setting: table tennis center adhd (+) cognitive flexibility (+) attention (+) cognitive process porter et al. ( ) [ ] case study – male yoga setting: classroom asd (+) attention brain sci. , , of table . cont. study design sample size age group * gender ** pd activity type and setting sd diagnosis results (positive [+], negative/no change [−], mixed [−/+]) ringenbach et al. ( ) [ ] rct – male and female exercise (assisted cycling therapy) setting: cycling bike down syndrome (+) response inhibition (−) cognitive flexibility (+) language (+) alertness and speed rosenblatt et al. ( ) [ ] prospective cohort – male yoga setting: medical school teaching hospital asd (−) attention rosenthal- malek et al. ( ) [ ] quasi- experimental – male exercise (mildly strenuous jogging) setting: urban public school and a community-based workshop asd (+) academic performance smith et al. ( ) [ ] prospective cohort – male and female exercise (continuous moderate-to-vigorous physical activity such as hopping, skipping, etc.) setting: not mentioned adhd (+) response inhibition (+) working memory stickney et al. ( ) [ ] qualitative children: not stated children: not stated equine-assisted therapy setting: central kentucky riding for hope asd (+) attention (+) language (+) academic achievement tsai et al. ( ) [ ] rct – male and female sport (tennis) setting: a laboratory developmental coordination disorder (+) inhibitory control tsai et al. ( ) [ ] rct – male and female sport (soccer) setting: school developmental coordination disorder (+) inhibitory control (+) attention brain sci. , , of table . cont. study design sample size age group * gender ** pd activity type and setting sd diagnosis results (positive [+], negative/no change [−], mixed [−/+]) tsai et al. ( ) [ ] rct – male and female exercise (the endurance training program consisted of interval training and one continuous long-distance running session, and one session with another aerobic activity (e.g., cycling, step aerobics, or rope jumping)) setting: school developmental coordination disorder (+) working memory verret et al. ( ) [ ] quasi- experimental – male exercise (sessions included warm-up; progressive aerobic, muscular, and motor skills exercises; and cool down) setting: school gymnasium adhd (+) attention wehrle et al. ( ) [ ] qualitative – male exercise (includes warm-up, free play, and skill of a week) setting: shady lane elementary school adhd (+) attention (+) academic performance wendt et al. ( ) [ ] quasi- experimental – male and female exercise (intense aerobic-type physical activity program) setting: suny buffalo amherst, turf football stadium adhd (+) cognitive control (+) working memory (+) cognitive flexibility (+) attention (+) cognitive performance (+) language (+) cognitive process (+) planning (+) academic achievement (+) fluid intelligence brain sci. , , of table . cont. study design sample size age group * gender ** pd activity type and setting sd diagnosis results (positive [+], negative/no change [−], mixed [−/+]) yildirim et al. ( ) [ ] rct – male and female exercise (circuit training, resistance training, and interval speed training) setting: school intellectual disability (+) alertness and speed ziereis et al. ( ) [ ] rct – male and female exercise (various activities such as juggling, tennis, trampoline, juggling, etc.) setting: facilities of the university of regensburg’s institute for sport science adhd (+) working memory notes: pd = program duration in weeks; sd = study duration in weeks; rct = randomized controlled trials; adhd = attention-deficit/hyperactivity disorder; asd = autism spectrum disorder. * we categorized the age to three groups including “ – ”, “ – ”, and “ – ”-year-olds. each study has been assigned the age group based on the mean age of study participants; ** study population has been considered as “male” when all or more than % of study participants were male. similarly, when all or more than % of study participants were female, the study population has been considered as “female”. brain sci. , , of when the study population consisted of children with asd, the most common inter- vention was equine-assisted therapy (n = ) followed by exercise (n = ). for children with adhd, the most common intervention was exercise (n = ) followed by yoga (n = ) and equine-assisted therapy (n = ). . . study outcomes and findings table shows different cognitive function outcomes with different populations. some papers reported on more than one outcome and the impact reported varied. table shows the frequency of cognitive outcomes assessed and the direction of change. table . frequency of cognitive outcomes assessed and the direction of change. outcomes frequency n (%) included studies * improvement ** no change ** mixed ** cognitive flexibility ( . ) ( . ) ( . ) cognitive control ( ) ( . ) ( . ) working memory ( . ) ( . ) ( . ) attention ( . ) ( . ) ( . ) ( . ) language ( . ) ( ) ( ) cognitive performance ( . ) ( ) cognitive process ( . ) ( ) planning ( ) ( ) academic achievement ( . ) ( ) ( ) academic engagement ( . ) ( ) academic performance ( ) ( ) fluid intelligence ( . ) ( ) alertness and speed ( . ) ( ) * the percentage indicates the proportion of included studies that assessed each of the listed cognitive outcomes; ** the percentage indicates the proportion of included studies that showed improvement, no change, or mixed results when the study assessed the relevant outcome. most of the reported results were measured by standardized scales. depending on the direction of the change of scores before and after intervention, results were classified as “improvement”, “no change”, “regression”, or “mixed results”. attention was measured in out of studies ( . %) and of them ( %) reported improvement ( were statistically significant) and study had mixed results. the six studies that did not show any change in attention were mostly rct and quasi-experimental studies of yoga or equine-assisted therapy with children diagnosed with adhd or asd with a sample size ranging from to . cognitive control was measured in studies ( %) and of them ( . %) showed positive changes ( were statistically significant). two studies did not show any change: one was a quasi-experimental study of equine-assisted therapy with seven boys with asd and the other one was a quasi-experimental study of an exergame with both genders with asd. working memory was the outcome reported in out of studies ( . %). seven of them reported a positive change (four were statistically significant) and one had mixed results. cognitive flexibility has been measured in seven studies ( . %). six of them reported a positive change (three were statistically significant); the single study that did not report improvement was an rct of exercise intervention with boys and girls with down syndrome. eighty per cent and % studies that measured language and academic achievement, respectively, reported favorable effects of physical activity interventions. other cognitive function outcomes included cognitive performance, cognitive process, academic engagement and performance, planning, fluid intelligence, alertness, and speed; all studies that assessed these functions noted positive changes. we did not find any research study that investigated the effect of physical activity on memory (short- and long-term) and perceptual processing. different outcomes were selected for different ndd brain sci. , , of conditions. table shows the frequency of cognitive outcomes assessed in children with adhd, asd, cp, and down syndrome and the direction of change. table . frequency of cognitive outcomes assessed in children with attention-deficit/hyperactivity disorder (adhd), autism spectrum disorder (asd), cerebral palsy (cp), and down syndrome, and the direction of change. adhd asd cp down syndrome outcomes (total number of studies) frequency n (%) number of positive results frequency n (%) number of positive results frequency n (%) number of positive results frequency n (%) number of positive results cognitive flexibility ( studies) ( . ) ( . ) ( ) ( . ) cognitive control ( studies) ( . ) ( . ) ( ) ( . ) working memory ( studies) ( ) ( . ) ( ) ( . ) attention ( studies) ( . ) ( . ) ( . ) ( ) language ( studies) ( ) ( ) ( ) ( ) cognitive performance ( study) ( ) ( ) ( ) ( ) cognitive process ( studies) ( ) ( ) ( ) ( ) planning ( studies) ( . ) ( . ) ( ) ( ) academic achievement ( studies) ( ) ( ) ( ) ( ) academic engagement ( studies) ( ) ( ) ( ) ( ) academic performance ( studies) ( . ) ( . ) ( ) ( ) fluid intelligence ( study) ( ) ( ) ( ) ( ) alertness and speed ( studies) ( ) ( ) ( ) ( ) specific to adhd, attention was measured in studies and ( . %) reported positive changes. working memory and cognitive control were studied in four studies that all showed improvement. in studies of children diagnosed with asd, studies out of ( . %) measured attention, with of them showing positive changes. cognitive control was assessed in four studies, with two studies reporting favorable effects. additionally, different interventions were associated with specific outcomes. for instance, the effects of exercise (n = studies) were assessed on attention in articles and all reported positive changes. in addition, working memory has been measured in seven articles, with six reporting improvement. for equine-assisted therapy interventions (n = studies), attention was measured in , with reporting improvement. for language (n = ) and cognitive control (n = ), two studies for each of these outcomes showed positive changes (see table ). brain sci. , , of table . frequency of cognitive outcomes assessed for the two most common physical activity interventions and the direction of change. physical activity/exercise/movement therapy equine-assisted therapy outcomes (total number of studies) frequency n (%) number of positive results frequency n (%) number of positive results cognitive flexibility ( studies) ( . ) ( ) cognitive control ( studies) ( ) ( ) working memory ( studies) ( . ) ( ) attention ( studies) ( . ) ( . ) language ( studies) ( ) ( ) cognitive performance ( study) ( ) ( ) cognitive process ( studies) ( ) ( ) planning ( studies) ( . ) ( . ) academic achievement ( studies) ( ) ( ) academic engagement ( studies) ( ) ( ) academic performance ( studies) ( . ) ( ) fluid intelligence ( study) ( ) ( ) alertness and speed ( studies) ( ) ( ) . discussion this comprehensive scoping review reports the impact of physical activity on the cognitive functions of children and youth with different types of ndd conditions: asd, adhd, cp, down syndrome, intellectual disabilities, physical disabilities, behavioral and social disabilities, learning disabilities, and developmental coordination disorder (dcd). a number of cognitive function outcomes were explored: executive function including cognitive flexibility, cognitive control and working memory, attention, short- and long-term memory, learning, perceptual processing, and alertness. most studies reported improvement in their measured cognitive function outcomes. about half of the reported improvements were statistically significant. no studies reported negative impacts or symptom regression on cognition among child participants with ndd. the majority of studies used standardized measurement tools in order to assess the change in studied outcomes. this finding indicates the role of physical activity in the learning and development of a child with ndd. the major findings of this scoping review will be discussed in the following paragraphs. most of the included studies have been conducted with boys – years of age who were diagnosed with adhd (n = , . %). this finding certainly corresponds to the fact that the main challenges described are triggered in the context of school exposure, and adhd incidence is much higher among boys than girls. this focus of interest indicates the importance of identifying effective interventions for school age children with ndd. regarding gender, most studies focus on boys, which corresponds to the fact that boys are more often diagnosed with adhd and asd in comparison to girls; however, we cannot eliminate a possible gender bias with more boys willing to participate in these brain sci. , , of studies. while some studies reported small improvements in girls with ndd, additional work is needed to clarify the relationship between physical activity and this particular sub-population. among the studies that were included in the present scoping review, the largest number of positive impacts of physical activity was found in studies of exercise inter- ventions followed by equine-assisted therapy, then sports. of these papers, the majority focused on children with adhd and asd, where attention and its sub-domains of focus and concentration were the most commonly measured cognitive function. this finding corresponds to the main concern in this population, especially in the school context [ – ]. in the case of adhd, participation in high-intensity physical activity or exercise may increase the release of endorphins (which helps regulate mood, pleasure, and pain) and neurotransmitters like dopamine, norepinephrine, and serotonin levels (which positively affect focus and attention) [ ]. combined, these effects on the brain help increase alertness and reduce the craving for new stimuli, which are typical characteristics of children with adhd. similarly, with asd, higher-intensity physical activity has been noted in the liter- ature as an effective supplement to children’s treatment regimens [ – ]. studies show that moderate-to-vigorous physical activity is associated with decreases in self-stimulatory behaviors, hyperactivity, aggression, self-injury, and destructiveness [ ]. furthermore, as many children with asd are at increased risk for weight gain, including regular phys- ical activity in their daily routine may have beneficial effects [ , ]. the incorporation of animal therapy into the treatment of protocols of children with adhd and asd is well-received and its positive effects have been noted in other reviews [ , ]. the type of ndd diagnosis and physical activity intervention were examined in this review. we found that children with asd saw the most improvements in attention and that equine-therapy appeared to be the best type of activity to produce such changes. as for children with cp, most gains were reported in the attention domain, with aqua therapy and movement therapy serving as ideal activities to realize such improvements. lastly, children with adhd reported improvements in attention, with again, exercise and movement therapy serving as the preferred conduits to improved cognitive functions, memory, and development. the acquisition of such information is paramount to our understanding of which domains of cognitive function are most positively impacted by physical activity and by which types of activity exposures. consequently, this information will assist with the creation of tailored physical activity programming for children with ndd based on their unique abilities. our findings confirm the ones from other literature reviews. pontifex et al. [ ] in their narrative review examined the role of physical activity in reducing barriers to learning in children with developmental disorders including adhd and asd. findings indicated that both single bouts of activity and chronic physical activity were associated with improved classroom performance [ , ]. a meta-analysis of articles by tan et al. [ ] found an overall small to medium effect of exercise on cognition. their findings support the efficacy of exercise interventions in enhancing certain aspects of cognitive performance in individu- als with asd and/or adhd. in another systematic review and meta-analysis of eight rcts, cerrilo-urbina et al. [ ] reported that short-term aerobic exercise, based on several aerobic intervention formats, seems to be effective for mitigating symptoms such as attention, hyperactivity, impulsivity, anxiety, executive function, and social disorders in children with adhd. however, to our knowledge, this scoping review is the first comprehensive review that explored the impacts of several types of physical activity interventions on all aspects of cognitive function for children with a variety of neurodevelopmental challenges. . . strengths and limitations the majority of papers included in this review were rcts and quasi-experimental studies, which highlights the credibility of the overall evidence. in addition, having a research question that was broad in scope allowed us to investigate many aspects of the existing relevant research studies. despite these strengths, there are several limitations brain sci. , , of of this review worth noting. first, most of the studies had small sample sizes ( % of studies included less than participants) and the physical activity programs were short in duration ( % of studies had interventions less than weeks). second, most studies did not organize data collection by a person who was unaware of the intervention status, which makes the studies prone to different types of observation/report biases and hawthorne effects (i.e., the change in behavior of study participants due to the awareness of being observed) [ , ]. third, information was generally lacking regarding the child/family’s satisfaction of the effect and the level that the positive impacts of physical activity could meet the specific needs of a child and family. fourth, due to the vast variability in report- ing interventions and results, informing best practice recommendations is not possible. finally, although the current review considered solely english-language, peer-reviewed publications and academic gray literature, examining the international and non-academic gray literature may help to expand and deepen our understanding of physical activity on acquisition of new functions (cognitive and psychological) and learning among children with ndd. . . future directions based on the findings of this scoping review, we have identified several areas for further investigations. high quality studies on the impact of physical activity on brain function among very young children (under years) with ndd are appealing. brain plasticity is maximal in young children [ , ]; therefore, interventions should target younger children instead of waiting for impairments to be revealed in light of the demands of the school classroom. more generally, specific research questions include determining the type of activities at different ages and which effect is expected on different types of outcomes. a more focused look at the relationship between physical activity and brain function across disability categories including the undertaking of further investigations into the development of physical literacy for long-term physical activity and its impact on brain health would also be of interest. given that peer relationships become increasingly important from childhood to adolescence, additional research to explore the impact of physical activity on social inclusion and personal identity development for children with ndd is important. as well, investigating the level of child/family’s satisfaction of the positive impacts is of paramount importance. lastly, a rigorous systematic review and meta-analysis of rcts that investigate the effects of physical activity on children and youth with ndd is warranted. . conclusions the findings of this scoping review highlight that physical activity may have a favor- able impact on the cognitive outcomes of children and youth with ndd. given these noted benefits, additional investigations are needed to help optimize the use of physical activity in the daily lives of children with ndd to not only support improved cognitive functions, but overall social integration and quality of life as well. author contributions: conceptualization, m.g. and j.-p.c., w.m., a.m.; data curation, m.g. and r.h.; formal analysis, m.g. and l.m.v.; funding acquisition, j.-p.c.; investigation, m.g., j.-p.c. and r.h.; methodology, a.r., m.g. and j.-p.c.; project administration, m.g. and j.-p.c.; resources, a.r. and m.g.; supervision, j.-p.c. and m.g.; validation, m.g., l.m.v., a.r.; visualization, m.g., l.m.v. and r.h.; writing-original draft, m.g., l.m.v. and j.-p.c.; writing-review and editing, m.g., l.m.v., j.-p.c., w.m., a.m. and a.r. all authors contributed to manuscript revisions and approved the submitted version. all authors have read and agreed to the published version of the manuscript. funding: the study was funded by a grant from the kids brain health network (kbhn)—networks of centres of excellence (nce) of canada. the kbhn had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. brain sci. , , of acknowledgments: we wish to acknowledge the strong support and help of michelle shalinsky, sanja radulovic, and gurtej sangha in conducting this review. bc children’s hospital research institute supported part of the salary of jpc. lmv was supported by a fellowship award from the canadian institutes for health research. conflicts of interest: the authors declare no conflict of interest. the authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. appendix a search strategy for each individual database pub med “recreation therapy” [mesh] or “music therapy” [mesh] or “play therapy”[mesh] or “leisure activities”[mesh] or “recreation”[mesh] or “art therapy”[mesh] or “exercise therapy”[mesh] or “sports”[mesh] or “animal assisted therapy”[mesh] or “equine-assisted therapy”[mesh] or “gymnastics”[mesh] or “dance therapy”[mesh] or “aquatic therapy” [tiab] or “hydro therapy” [tiab] or “creative arts therapy” [tiab] or “exercise”[mesh] or “therapeutic recreation” [tiab] or “recreation” [tiab] or “exercise” [tiab] or “exercises” [tiab] or “physical activities” [tiab] or “physical activity” [tiab] or “sport” [tiab] or “sports” [tiab]. and “intellectual disability” [mesh] or “disabled persons” [mesh] or “developmental disabilities” [mesh] or “rett syndrome” [mesh] or “down syndrome” [mesh] or “autis- tic disorder” [mesh] or “autism spectrum disorder” [mesh] or “cerebral palsy” [mesh] or “attention deficit disorder with hyperactivity” [mesh] or “fetal alcohol spectrum disorders”[mesh] or “neurodevelopment disorder” [tiab] or “neurodevelopment delay” [tiab] or “neurodisability” [tiab] or “neurodevelopmental disorders”[mesh] or “disabil- ity” or “neurodevelopmental disabilities” or “neurodevelopmental delays” or “neurode- velopmental disorders” or “neurodevelopmental disability” or “neurodevelopmental disorder” or “disabilities” or “neurodevelopmental delay” or “neurodisabilities”. limitations: – , all child (birth– ), english. medline search history (mh “recreation therapy”) or (mh “leisure activities”) or (mh “recreation”) or (mh “hydrotherapy”) or (mh “art therapy”) or “creative arts therapy” or “therapeutic exercise” or (mh “pet therapy”) or (mh “equine assisted therapy”) or (mh “dance therapy”) or “drama therapy” or (mh “play therapy”) or (mh “music therapy”) or (mh “gymnastics”) or (mh “yoga”) or (mh “martial arts”) or (mh “skating”) or (mh “skiing”) or (mh “baseball”) or (mh “basketball”) or (mh “soccer”) or (mh “recreation”) or (mh “dancing”) or (mh “racquet sports”) or (mh “snow sports”) or (mh “sports for persons with disabilities”) or (mh “sports”) or (mh “exercise+”) or (mh “movement”) or (mh “motor activity”) or ti “therapeutic recreation” or ab “therapeutic recreation” or ti recreation or ab recreation or ti exercise or ab exercise or ti “physical activities” or ab “physical activities” or ti sport or ab sport or ti “physical activity” or ab “physical activity”. and (mh “developmental disabilities”) or (mh “autistic disorder”) or (mh “child development disorders, pervasive”) or “neurodevelopmental disability” or “neurode- velopmental delay” or (mh “rett syndrome”) or (mh “cerebral palsy”) or (mh “down syndrome”) or (mh “intellectual disability”) or (mh “attention deficit disorder”) or (mh “attention deficit disorder with hyperactivity”) or (mh “fetal alcohol spectrum disorders”) or (mh “cerebral palsy”) or (mh “neurodevelopmental disorders”) or (mh “attention deficit and disruptive behavior disorders”) or (mh “motor skills dis- orders”) or disability or “neurodevelopmental disabilities” or “neurodevelopmental delays” or neurodisability or “neurodevelopmental disorders” or “neurodevelop- mental disorder” or (mh “disabled children”). brain sci. , , of limitations: – , all child (birth– ), english. cinahl search history (cinahl—cumulative index to nursing and allied health literature) (mh “recreation therapy”) or (mh “leisure activities”) or (mh “recreation”) or (mh “hydrotherapy”) or (mh “art therapy”) or “creative arts therapy” or (mh “therapeutic exercise”) or (mh “pet therapy”) or (mh “horseback riding”) or “equine assisted therapy” or (mh “dance therapy”) or (mh “play therapy”) or (mh “music therapy”) or (mh “gymnastics”) or (mh “yoga”) or (mh “martial arts”) or (mh “skating”) or (mh “skiing”) or (mh “baseball”) or (mh “basketball”) or (mh “soccer”) or (mh “walking”) or (mh “dancing”) or (mh “recreational therapy”) or (mh “aquatic sports”) or (mh “extreme sports”) or (mh “animal sports”) or (mh “winter sports”) or (mh “wheelchair sports”) or (mh “race walking”) or (mh “racquet sports”) or (mh “rock climbing”) or (mh “motor sports”) or (mh “running”) or (mh “sports, disabled”) or (mh “team sports”) or (mh “track and field”) or (mh “weight lifting”) or (mh “bowling”) or (mh “endurance sports”) or (mh “cycling”) or (mh “sports”) or (mh “golf”) or (mh “handball”) or (mh “exercise”) or (mh “physical activity”) or ti “therapeutic recreation” or ab “therapeutic recreation” or ti recreation or ab recreation or ti exercise or ab exercise or ti “physical activities” or ab “physical activities” or ti sport or ab sport or ti “physical activity” or ab “physical activity”. and (mh “intellectual disability”) or (mh “developmental disabilities”) or (mh “child, disabled”) or “developmental delay” or (mh “autistic disorder”) or (mh “child development disorders, pervasive”) or “neurodevelopmental disorder” or (mh “rett syndrome”) or “neurodisability” or (mh “cerebral palsy”) or (mh “down syndrome”) or “attention deficit disorder” or (mh “attention deficit hyperactivity disorder”) or (mh “fetal alcohol disorder”) or disability or “neurodevelopmental disabilities” or “neurodevelopmental delays” or neurodisability or “neurodevelopmental disorders” or “neurodevelopmental disability” or (mh “learning disorders”) or (mh “motor skills disorders”) or (mh “child development disorders”). limitations: – , age groups: infant, newborn: birth– month; infant: – months; child, preschool: – years; child: – years; adolescent: – years; english. psychinfo search history de “recreation therapy” or de “leisure time” de “recreation” or de “art ther- apy” or de “creative arts therapy” or de “exercise” or de “sports” or de “animal assisted therapy” or de “dance therapy” or de “play therapy” or de “music ther- apy” or “equine assisted therapy”“gymnastics” or “martial arts” or “skating” or “skiing” or “hockey” or “baseball” or “soccer” or “yoga” or “basketball” or de “physical activity” or de “aerobic exercise” or de “weightlifting” or de “yoga” or de “movement therapy” or de “baseball” or de “basketball” or de “extreme sports” or de “football” or de “judo” or de “martial arts” or de “soccer” or de “swim- ming” or de “tennis” or de “weightlifting” or de “childrens recreational games” or ti “therapeutic recreation” or ab “therapeutic recreation” or ti recreation or ab recreation or ti exercise or ab exercise or ti “physical activities” or ab “physical activities” or ti sport or ab sport or ti “physical activity” or ab “physical activity”. and de “developmental disabilities” or de “autism spectrum disorders” or “neurode- velopmental disability” or “neurodevelopmental delay” or de “rett syndrome” or de “cerebral palsy” or de “down’s syndrome” or de “intellectual development disorder” or de “attention deficit disorder” or de “attention deficit disorder with hyperactivity” or de “fetal alcohol syndrome” or de “disabilities” or de “learning disabilities” or de “multiple disabilities” or disability or “neurodevelopmental disabilities” or “neurodevelopmental delays” or neurodisability or “neurodevelopmental disorder” or “neurodevelopmental disorders”. brain sci. , , of limitations: – , age groups: childhood (birth– yrs), adolescence ( – yrs), english. eric search history de “therapeutic recreation” or de “play therapy” or de “leisure time” or de “recreation” or “aquatic therapy” or de “art therapy” or “creative arts therapy” or de “exercise” or “gymnastics” or “martial arts” or “skating” or “skiing” or “hockey” or “baseball” or “soccer” or “yoga” or “basketball” or “sport” or “animal assisted therapy” or “pet therapy” or “equine assisted therapy” or “dance therapy” or de “music therapy” or de “physical activities” or de “athletics” or de “physical recreation programs” or de “playground activities” or de “recreational activities” or de “racquet sports” or de “aquatic sports” or de “team sports” or ti “physical activity” or ab “physical activity” or ti “therapeutic recreation” or ab “therapeutic recreation” or ti “recreation” or ab “recreation” or ti “exercise” or ab “exercise” or ti “physical activities” or ab “physical activities”. and “intellectual disability” or de “mental retardation” or “neurodevelopmental delay” or “neurodevelopmental disability” or de “autism” or de “pervasive devel- opmental disorder” or de “attention deficit disorder” or “attention deficit hyperac- tivity disorder” or de “fetal alcohol syndrome” or “rett syndrome” or de “down syndrome” or de “disabilities” or de “adventitious impairments” or de “behav- ior disorders” or de “communication disorders” or de “congenital impairments” or de “developmental disabilities” or de “hearing impairments” or de “injuries” or de “intellectual disability” or de “language impairments” or de “learning dis- abilities” or de “mental disorders” or de “multiple disabilities” or de “perceptual impairments” or de “physical disabilities” or de “special health problems” or de “speech impairments” or de “visual impairments” or “cerebral palsy” or “disability” or “disabilities”. and de “children” or de “pediatrics” or “adolescents” or “youth” limitations: – , english. references . boyle, c.a.; boulet, s.h.; schieve, l.a.; cohen, r.a.; blumberg, s.j.; yeargin-allsopp, m.; visser, s.; kogan, m.d. trends in the prevalence of developmental disabilities 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[crossref] http://doi.org/ . / - . 	introduction 	materials and methods 	search strategy 	selection criteria 	screening process and study selection 	data extraction and synthesis 	results 	identified studies 	description of included papers 	study outcomes and findings 	discussion 	strengths and limitations 	future directions 	conclusions 	search strategy for each individual database 	references no job name r e s e a r c h p a p e r relationships in pain: the experience of relationships to people living with chronic pain in rural areasijn_ .. joanne tollefson rn bn mphtm phd senior lecturer (retired), school of nursing, midwifery and nutrition, james cook university, cairns, queensland, australia kim usher rn diphsc ba mnst phd professor and associate dean for graduate research studies, school of nursing, midwifery and nutrition, james cook university, cairns, queensland, australia kim foster rn phd associate professor mental health nursing, sydney nursing school, university of sydney, camperdown, new south wales, australia accepted for publication may tollefson j, usher k, foster k. international journal of nursing practice ; : – relationships in pain: the experience of relationships to people living with chronic pain in rural areas the aim of the study was to develop new understanding of the lived experience of relationships for rural people living with chronic pain. rural residents have greater difficulty accessing health services and providers. this is especially important to those living with chronic pain who often find themselves isolated from professionals who could potentially offer support. a phenomenological study with seven participants who had experienced chronic non-malignant pain for – years (mean = ) was recruited via a number of approaches and data analyzed using van manen’s framework. the themes that emerged from the analysis were as follows: pain as silence; privacy as a way of protection; no place out here to get support; and dealing with health-care professionals who do not understand. lack of specialist services and support in rural areas means people with chronic pain are placed in even more vulnerable situations. nurses remain at the forefront of service delivery in rural areas; hence, their role in management of people with chronic pain is vital in supporting them to maintain meaningful contact with others, including health professionals. key words: chronic pain, nursing, qualitative research, rural. introduction chronic pain is pain that lasts continuously or intermit- tently for a period of months and its cause is often unknown. a complex phenomenon, health-care profes- sionals are often required to deal with chronic pain on a daily basis. people who reside in rural areas can have correspondence: kim usher, school of nursing, midwifery and nutri- tion, james cook university, po box , cairns, qld , australia. email: kim.usher@jcu.edu.au; kim foster, sydney nursing school, university of sydney, mallett st., camperdown, nsw , australia. email: kim.foster@sydney.edu.au international journal of nursing practice ; : – doi: . /j. - x. . .x© blackwell publishing asia pty ltd greater difficulty accessing health services and health pro- viders. this is especially important to those living with chronic pain who find themselves isolated from the services and the professionals who could potentially offer them support. relationships with partners, family members, the community and health providers are para- mount to these people who can struggle to manage their activities of daily living. yet the personal experience of chronic pain has received relatively little attention to date, and the impact of chronic pain on people who reside in rural areas is largely absent in the literature. in australia, rural and remote communities are extremely diverse and constitute heterogeneity of demo- graphic and economic bases. the population’s age, gender, ethnic/cultural background, occupation, socio- economic status and communities’ social/economic structures, health and education facilities and size vary greatly. to discuss such a diverse population, a definition of the term ‘rural’ is required. however, the term has many definitions and can be difficult to define. for the purpose of this study, the accessibility/remoteness index for australia (aria) was used to determine rurality. the aria scale was developed as a measure of remoteness and the scale ranges from to ; the higher the score, the more remote from services. participants included in the study had an aria score of five or greater. this meant that most of the participants lived a minimum of km from the nearest specialist services, had restricted access to goods and services and had reduced opportunities for social interaction. this study was undertaken as the impact of chronic pain on interpersonal relationships is still relatively unknown, especially in relation to people in rural areas. the goal was to provide a means for the development of strategies that might be used in the future to better support people with chronic pain who reside in a rural location. background australians living in rural and remote areas experience different health status than their urban compatriots with both morbidity and mortality being higher. – compared with cities, the life expectancy of people in regional areas is – years lower and up to years lower in remote areas. furthermore, people living in regional and remote areas are more likely to report asthma, arthritis and bron- chitis. this difference in health status is attributed to geographical distance from services and a relative lack of health-care personnel and resources. people living with chronic pain in rural areas are often denied access to necessary health and support services, which makes living with their condition more difficult. estimates of the numbers of people living with chronic pain in developed countries vary according to the definitions of chronic pain used and the methods used to obtain the statistics, although the incidence of chronic pain is fairly stable in developed nations at between and % of the commu- nity. underreporting of chronic pain states is suspected because some studies indicate that the magnitude of the problem is greater than reported. not only are mon- etary and societal costs attributable to chronic pain, but the personal costs are also high. people lose self-esteem, their body image changes, there is an alteration in per- sonal relationships and family roles, and there is a loss of trust in the health-care system. the family forms the immediate context for the person living with chronic pain, and familial interactions can assist or hinder the person in adjusting to the pain expe- rience. smith and friedemann found that the impact of chronic pain on family relationships led to emotional dis- tress, distancing from family members, inability to share difficult feelings, intense mutual involvement with family and identification with others’ problems, and family iso- lation from the community. family dynamics are thus altered by the experience of chronic pain. given the rela- tive isolation of rural dwellers from health services where support would normally be found for people living with chronic pain and because little is currently known about the relationships of rural dwellers experiencing chronic pain, the current study was conceived. method a qualitative, phenomenological study was chosen as the most suitable method to explore the experience of rela- tionships for people living with chronic pain in rural areas. hermeneutical phenomenology is designed to unveil otherwise concealed meanings and hence to make the connection between what is familiar and unfamiliar in our worlds. it is therefore useful for studying topics central to humans’ life experience such as the impor- tance of relationships for people living with chronic pain in rural communities. participants a purposive sample was used to achieve the most relevant participants who could explain the phenomenon of inter- est. participants for this study were recruited because relationships in pain © blackwell publishing asia pty ltd they (i) were homogeneous in the fact that they all lived in a rural area with an aria score of three or greater and could therefore be expected to illuminate that aspect of their relationships and the pain experience and (ii) had an intensity of the experience of interest (chronic pain) and could therefore be expected to help with the exploration of what it is like to be in a relationship for people in chronic pain and living in rural areas. participants were recruited via a number of methods such as local media announcements, word of mouth, introductory letters sent by general practitioners (gps) and registered nurse (rn) referrals from a pain clinic at the nearest regional town. seven participants were interviewed and their ages ranged between and , which included three males and four females. the causes of participants’ pain included fibro- myalgia, low back pain, arthritis, whiplash injury and trauma from an accident. inclusion criteria to be included in the study, the participants had to meet the following criteria: • aged over years; • have experienced chronic non-malignant pain diag- nosed by a doctor for more than years; • fluent in english; • capable of giving informed consent; and • reside in a rural town with an aria rating greater than three. ethical considerations ethical approval was sought and received from the re- levant university human research ethics committee. participants were provided with information sheets and were asked to sign consent forms prior to interview. they were also provided with a telephone number of a coun- selling service to contact if they were distressed in any way as a result of the interview. this service was not required by any participants to our knowledge. pseu- donyms were allocated to all participants after the initial interview and were used in all resulting publications to help protect the identity of the participant. interviews a conversational-type interview of ~ h was organized with each participant at a convenient place and within a mutually agreeable time frame. in particular, we used open-ended conversational-type interviews where the participants were encouraged to tell their own story with little prompting from the researcher. this type of infor- mal interview is likely to reap more from participants than a more structured approach. initially, demographic characteristics were sought, including age, residence, disease process, pain levels and the length of time the pain had been endured. this was used as an ‘ice-breaker’ to dispel tension and gain the participant’s confidence. par- ticipants were then asked questions such as: can you tell me how living with chronic pain has impacted on your relationships within your family and with others? the conversations were audiotaped with the participant’s consent. analysis data from the study were analyzed using van manen’s thematic approach. each verbatim transcription was read through although listening to the tape to resituate the researcher into the conversation. the interpretation process was begun by rereading the transcription and identifying contradictions between the tone, hesitations and silences in the material and the words used. following this, each line of text was read for meaning, then larger, meaningful groupings of words were read for central ideas and meaning. writing and rewriting then followed an integral part of van manen’s and other phenomenological analytic approaches. findings the existential essence of relationality illuminated the experiences of the participants within their relationships—initially with their significant others, then with their intimate and close circle of friends and with the wider circle of friends and neighbours. the essence also includes the individual’s relationships with health-care professionals. four themes emerged: pain as silence, privacy as a way of protection; no place out here to get support; and dealing with health-care professionals who do not understand. pain as silence although pain was a major aspect of their life, most par- ticipants described minimizing the extent of their pain, even when talking to close family members, in order to avoid upsetting or burdening their significant others. as diane said: i don’t tell her ( -year-old daughter) about the pain. i don’t want her to worry and i don’t want her to then decide that she won’t do things because she thinks she should be home looking after me, you know. j tollefson et al. © blackwell publishing asia pty ltd there are several reasons for this silence, and each bears a relationship to the others. stoicism, privacy, autonomy and dignity were intimately bound together to protect the individual from the outside world. brigid said: i don’t want anyone feeling sorry for me and i don’t want anyone thinking, you know, i’m worse off—it’s something i live with and i don’t ask other people to live with it, especially friends. self-reliance and stoicism is typical of rural people, so it is not surprising that it was evident in participants’ narratives. stoicism arises from previous experience, cul- tural mores and religious traditions. the quiet endurance of adversity and setbacks with courage and grace is a rural cultural expectation. diane feels that she has to apolo- gize for her inability to contribute to the various commit- tees and functions she attends because, as a relatively young woman of , there is an automatic presumption that you are more able to contribute than older, frailer-looking members and workers. reticence implies a reluctance to speak of the pain. this is one of the recurring themes from participants, and it seemed that the worse the pain was, the more reticent the individual. for instance, carl told all of his family of origin that he has this painful condition (by sending them the brochures the doctor gave him) but downplayed the magnitude of the pain on a daily basis, answering the inevitable ‘how are you today?’ with oh, well enough and not mentioning the pain specifically. diane said, you hurt all the time and you worry it’s going to hurt worse . . . but what can you do? people don’t want to hear it, they don’t want to know that you’re more miserable than they are, i think a lot of the time—you know. it was as if there is a tacit agreement that pain as a topic of conversation was to be avoided. diane has a further perspective on her reluctance to speak of the pain as she attempts to maintain indepen- dence: i sort of have the feeling that i want to wait ‘til things get really bad before i impose on their time any more, you know, like there’s a sense of not wanting to empty the favour bucket. asking for assistance is problematic for most people because in australian culture and especially in rural australia, rugged, independent individualism is an expected and valued trait. whereas pain might be silenced in any person with chronic pain, in rural areas it seems that the silence on pain might be a way of life that is part of being a country person. the need to silence the pain therefore results in guilt within relationships, including with inti- mate partner and other town folk. there also seems to be an inability to continue to participate in family, work and social life, and understanding the effect that this has on family and friends leads to a sense of guilt. there is guilt at being unable to assume normal (or previously held) role responsibilities and especially intimate roles—we don’t have a sex relationship in the marriage because [of the] pain (gary). social obligations and outings could only be spon- taneous because of the unpredictability of the intensity or the constant presence of the pain. privacy as a way of protection arendt names pain as one of the intimate parts of our lives and it is thus assigned to our private selves. privacy is considered very precious as it can keep outsiders from seeing what goes on in our undisclosed lives and from browsing in our souls. the intimate and thus private sphere of our lives is developed through the processes of learning and adhering to social rules to avoid some sort of punishment. social rules are pervasive and diane sug- gested that . . . australians i think have a real reticence about asking personal questions in general. gary, too, found that friends were unwilling to approach him, and says that after he got sick, i avoided them (friends) but there was avoidance from them too, because they—i was just quiet, hunched over, obviously in pain. choosing to discuss information, feelings and judg- ments with those we select is a function of privacy. diane says that there were a few friends to whom she was willing to disclose the level of pain she was enduring: yeah, some people i would (tell) a lot more to than others. you know some friends . . . i’ve known for a long time now, i’ll just come right out and say look, everything’s hurting today, i’m having a horizontal day. i’m just going to stay in bed in the electric blanket. sorry. no place out here to get support participants also found that family roles changed when living with chronic pain, and often their role responsibili- ties (e.g. financial responsibilities, child rearing, and house and yard work) were shifted onto the closest other, with that person assuming the altered responsibilities as well as their own. for example june says her husband comes home late of a night and then turns around and cooks his tea and has had to do the shopping when she has a bad day. social isolation often resulted when outings were can- celled because of the pain, and the closest other was reluc- tant to leave the person living with pain alone, with the increased levels of pain. brigid says, i have no family support but she does have a significant friend who is her next of kin—no relation—she’s relationships in pain © blackwell publishing asia pty ltd my next of kin, she’s on my medic alert card, she’s on my organ donor card, my will, my burial and my bank, who had become brigid’s de facto family. this friend provided comfort and support for years. diane has a daughter and her parents live close. her parents help out with driving and going to collect my medication for me (a roundtrip of h). diane says i’m fortunate that my parents live nearby so they’re available to sort of pick up the slack. pets were part of the family support system as well. brigid, gary, leah and june all had dogs as companions. june had a young dog that was much cherished and she said, they give you that much bloody support and comfort, they do. brigid has a beloved pet, tippy, who was integral to her ‘family’, providing companionship and comfort. tippy lived with brigid and accompanied her to town on the scooter . . . on sunday, i take my time—we call in and see a few friends. moreover, gary says he went and got a little dog and she’s just about the best mate at the time . . . so that’s kept me—oh no, it gave me something to be responsible for, i suppose as it’s a living animal. however, sometimes support from others was not there. diane said, sometimes when i’m just having a bad patch . . . people become then sort of become almost aggressive, especially when i have to say look, i’m sorry, no, i can’t come to this or be part of that or do the other things. more often, in a small town or country area, there was good support—neighbours rallied around. again, diane dem- onstrates this. a couple of months ago i got sick and had some trouble breathing and they rushed me off to hospital in an ambulance and my next-door neighbour collected my daughter from school, and then the next day she had a stroke and she was carted off to a different hospital in an ambulance, so one of my neighbours looked after my daughter because my parents were in new zealand on holidays as these things always happen, so one of their neighbours then was contacted by one of my neighbours to say that i was in hospital so then my parents had organised for them to feed their animals and look after their house and they came round and sorted out my house and brought casseroles for my daughter and came up and did my washing and all of those sorts of things, and all of this sort of happened sort of via the community grapevine really. and i mean you would never get that in a city environment. support from health professionals though was often not available in small rural towns as those that were there were usually overworked and others just came for ‘locum’ periods or holiday relief. brigid says, there’s no place out here where you can go and sit and have a good yarn about it (the pain experience) except to my gp, and he’s back today. yet even when they were available, the relationship between the patient with chronic pain and the health professional could be strained. dealing with health-care professionals who do not understand sharing confidences with another person generally increases intimacy and paradoxically produces a tension, as we are giving another person access to our innermost thoughts, which might alter the intimate relationship negatively. health-care professionals hold a privileged position in our society in that they are trusted with private information without reciprocating. disclosing personal information in a small town can be threatening to personal integrity because there is often a very active and efficient ‘grapevine’, permitting everyone in town to soon know an individual’s business if the person confided in is not discreet. brigid says the reason she could talk to a psy- chologist was because she wasn’t living in this town and she was helping me through a very bad time and of course being a professional someone that—you know small towns? how word of mouth gets around so quick. so i know it wasn’t going any further than her. participants highlighted that trust can be eroded when the health professional does not acknowledge the indi- vidual’s involvement in their care plan. brigid reveals this deterioration in the relationship she had with the previous gp in her town: well, the one before dr p. didn’t understand, just didn’t know anything about this and wasn’t interested. he just said straight out that wasn’t his line—he wasn’t going that way. and he couldn’t understand, i suppose, the amount of pain. he was forever telling me that ‘don’t do this, don’t do that’. in his opinion i should have been just be sitting in my chair you know, knitting the rest of my life away. this is especially problematic in small rural towns as there is often only one gp available. many small town hospitals and clinics are also serviced by locum doctors, or ‘fly-in-fly-out’ arrange- ments, and agency nurses often staff the hospital and surgery. brigid says, they do a good job, but they are mostly agency nurses—come for six weeks. we’ve only got—at present we’ve only got two local people—two sisters. another facet of living in a small town was the necessity to rely on an often overworked health-care professional. carl says, there is a doctor in town but—and he was a very good doctor i started going to—but he, to me, was overworked and i used to talk to him about a few things and he would do his best. as a result, carl now travels a couple of hours to my doctor on the coast who was the initial doctor that stuck with j tollefson et al. © blackwell publishing asia pty ltd me. people in small towns often must travel long distances to see the gp of their choice. discussion participants in this study described being silent about pain with their significant others in order to protect themselves and their loved ones from the fallout of the pain experi- ence. dickson and kim also found this reticence in their cohort of korean–american women living with chronic osteoarthritic pain. blomqvist and edberg interviewed elderly folk who lived with chronic pain and found that pain threatened these people’s self-image as independent individuals. a large percentage of these people tried to hide the pain with silence and a reluctance to complain. they were unwilling to put the strain of their pain onto their significant others. these qualitative studies support the findings of the current study. dewar and lee found that although the significant other was a valuable source of support, bearing the condition was essentially up to the individual, and this realization was instrumental in adjust- ing to their circumstances. participants in the current study also indicated that hiding the condition and the extent to which it impacted on their life was an effective strategy that assisted them to live with the pain. living in a small rural town appears to have been of particular benefit for some of the participants, as it provided them with the opportunity to remove themselves from family and other obligations and avoid contact with others when desired, enabling them to hide their pain from others. relationships with others revealed by the participants varied from firmly supportive through to apathetic or even destructive. however, whether positive or negative, each interaction described was the result of the person living with chronic pain inserting themselves into the human world and enlisting the help of other to accomplish something. the rural community involvement and concern was particularly important and not found in other previous studies of people living with chronic pain. friends and neighbours helping when the person living with chronic pain could not accomplish their chores or offering a cheery word on the street were integral to participants’ experiences of small town living. pets are part of many families and provide companion- ship, unconditional love and a snuggle factor of touch and warmth. the majority of the participants in the current study found pets provided both support and comfort to them. strandmark substantiates the importance of pets to some of her participants, as does the review by halm. johnson et al., although not a qualitative study, reported an increased perception of well-being and improved health by those who had had a series of pet therapy visits. other studies reported positive results of research into pet therapy, but no other qualitative studies on pets or companion animals with people with chronic pain were located. the issue of relating to health-care professionals was a significant problem raised by participants. they spoke about the difficulty in establishing an effective interaction with their health-care professional. many personal, profes- sional and situational factors contributed to the difficulties. often the gp was from a different culture and spoke english as a second language. discussions of the pain problem were difficult, with accents sometimes getting in the way when the gp was from another culture or country; not surprising given that international medical graduates are becoming the mainstay of the medical workforce in regional and remote areas of australia. furthermore, gps who work in small country towns are often very busy people, and devoting a lot of time to listen to someone who is living with chronic pain takes time from other patients who need attention (whose ills might be easier to deal with and might result in a cure). as living with chronic pain is known to limit a person’s social interactions and willing- ness to explore opportunities and treatment options, this might help explain the participants’ feelings that gps were unhelpful. although participants were particularly asked about any contact they had with nurses in their professional capacity, all denied having any meaningful interactions with nurses. this is unfortunate, as nurses have much to offer people living with chronic pain, especially as they are often the only health-care professional available to rural residents. the rural nurse should be complementing and supporting the work of the gp by undertaking these roles. in fact, nurses who specialize in working in rural areas might be better placed than doctors to manage people with chronic pain in the future. limitations this study was limited by a number of factors. the study participants were drawn from rural towns within a small geographic location. it is possible that others with chronic pain residing in other rural areas might have different stories to tell. furthermore, the study attracted partici- pants by various methods, and seven participants were included in the final sample. it is possible that we missed identifying or including rural people who might have relationships in pain © blackwell publishing asia pty ltd experienced their life with chronic pain differently. sample size in phenomenological studies usually ranges from six to as the goal is depth of understanding of the phenomenon. furthermore, it is also usual practice to cease data collection when redundancy is achieved, which infers that no new thematic material is being heard in interviews. conclusion relationships are crucial to the well-being of people who live with chronic pain. health-care professionals must understand the reticence of rural people with pain to reveal the true extent of their condition and use their assessment skills appropriately to improve the care and outcomes for this challenged group. the lack of specialist services and support in rural areas means people with chronic illnesses and conditions such as chronic pain are placed in vulnerable situations. given the chronic health workforce shortages experienced in rural areas, the deliv- ery of adequate health services to rural people is jeopar- dized. nurses remain at the forefront of service delivery in rural settings; hence, their role in regard to the man- agement of people with chronic pain is very important. however, nurses were conspicuous by their absence from the conversations in this study. although nurses are the largest group of health-care professionals, the people in this study reported few helpful contacts with nursing staff. many of the strategies for adequately managing and adapt- ing to pain are educational—self-management, pacing, knowledge of the condition and effective use of analgesia—and nurses should have a significant role in this education. efforts to recruit more rural-based rns to undertake further studies, especially in pain management, could offer people in rural australia another avenue of assistance in living with chronic pain. references international association for the study of pain (iasp). clas- sification of pain. seattle, wa, usa: iasp press, . bamford e, dunne l. quantifying access to health facilities. paper presented at the th national rural health con- ference, . australian institute of health and welfare (aihw). rural, regional and remote health: indicators of health status and deter- minants of health. rural health series no. , cat. no. phe . canberra: aihw, . available from url: http:// www.aihw.gov.au/workarea/downloadasset.aspx?id= . accessed march . preston g. mapping the differences: an examination of hos- pitalization of remote, rural and metropolitan australians. paper presented at the th national rural health con- ference, . hays r. practicing rural medicine in australia. melbourne, victoria, australia: eruditions publishing, . smith jd. australia’s rural and remote health—a social justice perspective. croydon, victoria, australia: tertiary press, . strasser r. rural health research: have we turned the corner? the australian journal of rural health ; : – . eyles r, smith b. rural health in queensland: a changing focus. the australian journal of rural health ; : – . brennan f, carr db, cousins mj. pain management: a fundamental human right. pain medicine ; : – . mayer d, torma l, byock i, norris k. speaking the lan- guage of pain. the american journal of nursing ; : – . sturgeon a, zautra a. resilience: a new paradigm for adap- tation to chronic pain. current pain and headache reports ; : – . smith aa, friedemann ml. perceived family dynamics of persons with chronic pain. journal of advanced nursing ; : – . streubert speziale hj, carpenter dr. qualitative research in nursing. advancing the humanistic imperative, rd edn. new york: lippincott, williams and wilkins, . llewellyn g, sullivan g, minichello v. sampling in quali- tative research. in: minichello v, sullivan g, greenwood k, axford r (eds). handbook of research methods for nursing and health science. frenchs forest, nsw, australia: pearson educational australia, ; – . chapter . van manen m. researching lived experience: human science for an action sensitive pedagogy. london, canada: the althouse press, . george sr, thomas sp. lived experience of diabetes among older, rural people. journal of advanced nursing ; : – . heenan d. the factors influencing access to health and social care in the farming communities of county down, northern ireland. ageing and society ; : – . bigbee j, lind b. methodological challenges in rural and frontier nursing research. applied nursing research ; : – . arendt h. the human condition. chicago, il, usa: univer- sity of chicago press, ; . dickson gl, kim ji. reconstructing a meaning of pain: older korean american women’s experiences with the pain of osteoarthritis. qualitative health research ; : – . j tollefson et al. © blackwell publishing asia pty ltd blomqvist k, edberg ak. living with persistent pain: expe- riences of older people receiving home care. journal of advanced nursing ; : – . dewar a, lee ea. bearing illness and injury. western journal of nursing research ; : – . strandmark m. ill health is powerlessness: a phenomeno- logical study about worthlessness, limitations and suffering. scandinavian journal of caring sciences ; : – . halm ma. the healing power of the human-animal connec- tion. american journal of critical care ; : – . johnson ra, meadows rl, haubner js, sevedge k. animal-assisted activity among patients with cancer: effects on mood, fatigue, self-perceived health, and sense of coher- ence. oncology nursing forum ; : – . department of health and ageing (doha). general practitioner statistics. canberra: doha. . available from url: http://www.health.gov.au/internet/main/ publishing.nsf/content/general+practice+statistics- accessed march . van doesum k, hosman c, riksen-walraven j. a model- based intervention for depressed mothers and their infants. infant mental health journal ; : – . daly j, bryant r. professional organizations and regu- latory bodies: forging and advancing the role of nurses in australian primary care. contemporary nurse ; : – . morse j. designing funded qualitative research. in: denzin nk, lincoln ys (eds). handbook of qualitative research. thousand oaks, ca, usa: sage, ; – . tollefson j, piggot k, fitzgerald m. management of chronic pain. in: chang e, johnson a (eds). chronic illness and disability. 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( ) / styshov. А. ( ). ukrainska leksyka kintsia xx stolittia (na materiali movy zasobiv masovoi informatsii). [ukrainian lexicon of the end of xx century (on the material of the language of mas media)]. kyiv : pub. center of knlu. [in ukrainian]. Подано до редакції . . Рецензовано . . Прийнято до друку . . udc ’ the framing of music therapy in research articles involving dementia oleksandr kapranov phd, post-doctoral researcher the university of bergen, norway, p.o.box , bergen , norway oleksandr.kapranov@uib.no abstract the present article involves a qualitative investigation of the framing of music therapy in research publications associated with dementia. the aim of this investigation is to establish how music therapy in dementia is framed in scientific texts published by the peer-reviewed journal alzheimer’s and dementia within the period of time from until the end of . the corpus of the study consists of scientific articles published in alzheimer’s and dementia. the results of the framing analysis indicate that music therapy in alzheimer’s and dementia is construed by several frames, such as ‘nonpharmacological intervention’, ‘caregiver’, ‘apathy’, ‘agitation’, ‘behavioural symptoms’, and ‘memory and cognitive function’. these findings are further discussed in the article. key words: alzheimer’s, dementia, framing, music therapy Психолінгвістика . Психолингвистика . p s y c h o l i n g u i s t i c s introduction the present article involves a qualitative study aimed at establishing how music therapy in dementia is framed in scientifi c texts published by the peer-reviewed journal alzheimer’s and dementia within the period of time from until the end of . dementia is referred to in scientifi c literature as a range of neurodegenerative illnesses of which alzheimer’s disease is the most well-known and prevalent variant (van gorp & vercruysse, : ). according to the defi nition of dementia by alzheimer’s association, dementia is classifi ed as aneurocognitive disorder, characterised by a signifi cant cognitive decline, ‘a decline in memory, language, problem-solving and other cognitive skills that affects a person’s ability to perform everyday activities. this decline occurs because nerve cells (neurons) in parts of the brain involved in cognitive function have been damaged and no longer function normally.’ (alzheimer’s association, : ). dementia involves a range of behavioral and psychological symptoms, which are treated pharmacologically (e.g., sedatives, neuroleptics and antidepressants) and non-pharmacologically. music therapy is deemed to be a promising nonpharmacological approach for treating clients with dementia. music therapy is based on the systematicuse of musical instruments to improve communication between music therapist and clients (raglio et al., ). in this respect, there is ‘the growing demand for music therapy services with people affected by dementia.’ (pavlicevic et al., : ). music therapy is defi ned as ‘a three-dimensional therapeutic interaction between a trained music therapist, the music, and a patient who meet to reach defi ned goals and objectives.’ (ray et al., : ). according to american music therapy association, music therapy is ‘the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.’ (american music therapy association, ). in clinical settings, music therapy involves individual therapy and group therapy (chang et al., ). whilst in individual music therapy the music content and activities are provided according to the client’s background and preferences, the focus of group music В и п . ( ) / therapy is on the interactions among the clients, as well as on the experience sharing (chang et al., : ). a further distinction of the defi nition of music therapy is often made between receptive approaches, for instance listening to music, and active or participatory approaches (pavlicevic et al., : ). music therapy is considered to involve ‘a cooperation between client and therapist to support the client’s physiological, mental and social resources by using music experience in a goal-directed, knowledge- and evidence based, and participatory approach.’ (wosch, : ). evidence for the benefi ts of music therapy in dementia involves short-term reductions in behavioural disturbance and improved mood (mcdermott et al., : ). in particular, music therapy is now used with increasing frequency, especially for the treatment of agitation and aggressiveness (raglio et al., : ). whilst there is a burgeoning body of literature associated with music therapy in dementia, there is still insuffi cient research involving the framing of music therapy in scientifi c texts. the novelty of the present research rests with a qualitative approach employed to explore how the use of music therapy in dementia is framed in scientifi c articles published by alzheimer’s and dementia. the present article is structured as follows: first, previous studies involving music therapy in dementia will be outlined. second, the notion of framing in medical discourse will be discussed. third, a qualitative study of framing associated with music therapy in dementia will be introduced. previous studies involving music therapy in dementia in previous research literature, music therapy is regarded as one of non-pharmacological treatment options in dementia (svansdottir & snaedal, : ). previous research fi ndings suggest that the use of music therapy to treat clients with dementia has facilitative effects on memory, arousal, attention, learning, and anxiety (keough et al., : ). werner et al. ( ) suggest that music therapy reduces depressive symptoms, concentration diffi culties, lassitude, inability to feel, pessimistic thoughts and inner tension. cabrera et al. ( : ) observe that a live-music intervention has positive effects on behavioral symptoms by decreasing agitation and anxiety. it is reported that a group music-listening intervention has showed a statistically signifi cant decrease in agitated behavior scores (ibid.). Психолінгвістика . Психолингвистика . p s y c h o l i n g u i s t i c s the positive effects of music therapy in dementia have been reported in a variety of health care settings. in this regard, ray et al. ( : ) posit that alzheimer’s disease and other types of dementia are among the disorders most commonly treated with music therapy. music therapy for individuals with dementia focuses on improved communication, memory, behavioral management, and facilitating interactive relationships with therapists and carers. music is seen as a tool to achieve those goals, and the outcomes of music sessions are measured either quantitatively or qualitatively. whilst positive effects of music therapy have been reported, it should be noted that the body of previous research studies involving music therapy in dementia is based on a limited number of participants (svansdottir & snaedal, : ). consequently, case studies associated with music therapy in dementia are characterised by a great degree of variability (ibid.). the limitations of the case studies have led the research community to believe that a fundamental evaluation of music therapy benefi ts in the treatment of dementia cannot yet be made (grässel et al., ). grässel et al.’s ( ) observation is corroborated by the research fi ndings reported by thornley and the colleagues ( ). the results of the study by thornley et al. ( : ) seem to contradictcurrent evidence showing the benefi ts of music therapy for clients with dementia in nursing home settings. the lack of benefi t of music therapy in the study is reportedly evident from the clients’ with dementia inability to meaningfully engage in the intervention(thornley et al., ). the above-mentioned fi ndings are echoed in koger et al. ( : ) who indicate that it is problematic to determine the relative effi cacy of different methodological protocols within the existing literature pertaining to the effectiveness of music therapy intervention when dealing with clients with dementia. interestingly, whilst koger et al. ( : ) point to the inconclusiveness of the positive outcomes of music therapy, the authors, nevertheless, emphasise that ‘all humans, regardless of dysfunction or lack thereof are responsive to interactions involving music’. В и п . ( ) / the notion of framing in medical discourse there is a substantial body of cross-disciplinary literature on medical discourse, characterized by signifi cant differences among the interests, theories, and methodologies (ainsworth-vaughn, ). one of the approaches to the analysis of medical discourse involves the so-called ‘framing analysis’. this analysis is based upon the notion of a frame. according to entman ( ), the concept of framing is applicable to the description of a communicative text. framing illuminates ‘the precise way in which infl uence over a human consciousness is exerted by the transfer (or communication) of information fromone location-such as a speech, utterance, news report, or novel-to that consciousness’ (entman, : – ). frames involve schemas, or mental constructs representing expectations about what the world is like in general. it is posited that these expectations are organized as chunks of information (tannen & wallat, ). since frames involve expectations about particular interactions via information chunking, they are deemed to be associated with macro-structures, which account for the global meaning of discourse (van dijk, ). consequently, frames can be regarded as the schemas of interpretation, which organise experiences, guide actions, and provide coherence to a set of idea elements (fiss & hirsch, : ). frames have been explored as shared cultural tools for the creation and interpretation of meaning in a variety of contexts, e.g. political news, science, technology, and medicine (koteyko et al., : ). in the latter context, frames have been applied to elucidate avian fl ue (koteyko et al., ), the issues of hygiene (crawford et al., ), diabetes (hunt & koteyko, ), etc. the framing in medical discourse is associated with public health issues. the framing involves the defi nition of a health problem, and the establishment of its causes and possible solutions (lawrence, ). frames are constituted by the participants’ interactive behaviorin medical settings. specifi cally, lawrence ( ) indicates that the doctor-patient encountersare framed as a part of the medical institution, whereby the participants are constituted as doctors, patients (clients), nurses, and caregivers. Психолінгвістика . Психолингвистика . p s y c h o l i n g u i s t i c s the notion of a frame has been applied to a number of previous studies involving dementia discourse (kapranov, forthcoming). in particular, the qualitative framing analysis in kapranov (forthcoming) has yielded a set of frames associated with dementia in the research articles published in ‘alzheimer’s and dementia’ in . these frames construe dementia as a range of issues, which are associated with gender, age, medical costs, caregivers and care-recipients, disability and death, health policy, medical conditions, and ethnicity. the study involving the framing analysis of dementia discourse by kapranov (forthcoming) has revealed that the framing of dementia as an age-related issue in ‘alzheimer’s and dementia’ serves as a background for other foregrounded construals, for instance, gender, ethnicity, spatial orientation, etc. it is concluded in kapranov (forthcoming) that the ‘age’ frame provides a broad background against which more specifi c framing takes place. however, the fi ndings in kapranov (forthcoming) suggest that the framing of dementia associated with medical condition tends to be an isolated frame, where the construal of dementia is foregrounded without explicit reference to other frames. the framing of music therapy in research articles involving dementia whilst there is a burgeoning bulk of literature on framing in medical discourse (see salager-meyer et al. ( ) for an exhaustive meta-analysis), there are not so many studies involving the framing of music therapy in dementia. the present qualitative investigation seeks to address the gap by analyzinghow music therapy is framed in one of the most prestigious peer-reviewed journals, alzheimer’s and dementia. the hypothesis of this investigation is based upon the following assumption: given that previous literature is inconclusive in regard of the positive effects of music therapy interventions in dementia, it is hypothesised that music therapy will be operationalised by a variety of competing frames. the exact nature of the variety of frames will be established by means of the qualitative analysis. hence, the specifi c research aim of the present qualitative investigation is to elucidate how music therapy is framed in scientifi c articles published by alzheimer’s and dementia. В и п . ( ) / materials the corpus of this qualitative study involves scientifi c articles published in alzheimer’s and dementia in – . the articles have been collected via an electronic search on the web site scholar. google.com with the active fi lters involving the publication date (from . . till . . ), and the key words‘alzheimer’s’, ‘dementia’, and ‘music therapy’. the electronic search has been manually checked for the presence of the key words in each respective article. in total, articles with an explicit reference to music therapy in dementia have been selected for the present analysis. methods the methodology employed in the present article replicates a previous study by kapranov (forthcoming), which elucidates the framing of dementia in alzheimer’s and dementia. in particular, kapranov’s (forthcoming) methodology follows the guidelines described by van gorp & vercruysse ( ), whose research focus is on how dementia is framed in media texts. the qualitative component of van gorp & vercruysse’s ( ) methodology has been applied to the present corpus of scientifi c articles involving dementia, published in ‘alzheimer’s and dementia’ in – . results and discussion the results of the qualitative framing analysis have been summarised in table below. table the framing of music therapy in alzheimer’s and dementia in – # frames author/authors . nonpharm- acological intervention alzheimer’s association ( ); alzheimer’s association ( ); beynon et al. ( ); kim et al. ( ); lanctôt et al. ( ); li et al. ( ); ogunlade & ray ( ); ray & maier ( ); schall et al. ( ); shahinfard et al. ( ); sullivan et al. ( ); yang et al. ( ). . caregiver beynon et al. ( ); ray & maier ( ); sullivan et al. ( ); yu-ying ( ) . apathy lanctôt et al. ( ) Психолінгвістика . Психолингвистика . p s y c h o l i n g u i s t i c s . agitation ray & maier ( ); sullivan et al. ( ). . behavioural symptoms beynon et al. ( ); hsiung et al., ( ); schall et al. ( ) . memory and cognitive function innes et al. ( ); li et al. ( ) as evident from the data, the framing of music therapy in dementia discourse published by alzheimer’s and dementia in - is construed by several frames, such as ‘nonpharmacological intervention’, ‘caregiver’, ‘apathy’, ‘agitation’, ‘behavioural symptoms’, and ‘memory and cognitive function’. the frame ‘nonpharmacological intervention’ the framing of music therapy as a non-pharmacologic therapy has been identifi ed in alzheimer’s association ( ; ), beynon et al. ( ), kim et al. ( ), lanctôt et al. ( ), li et al. ( ), ogunlade & ray ( ), ray & maier ( ), schall et al. ( ), shahinfard et al. ( ), sullivan et al. ( ), and in yang et al. ( ). in the majority of these studies, the framing of music therapy via ‘nonpharmacological intervention’ is embedded into other frames, e.g. in beynon et al. ( ), lanctôt et al. ( ), li et al. ( ), ray & maier ( ), and sullivan et al. ( ). arguably, the frame ‘nonpharmacological intervention’ serves as a background for other frames to be fore grounded. judging from the framing analysis, the narrative of music therapy as a nonpharmacological therapy by alzheimer’s association ( ; )is characterised by a neutral and cautious discursive tonality, seen from the following excerpts: ( ) as with current pharmacologic therapies, non- pharmacologic therapies havenot been shown to alter the course of alzheimer’s disease. …additional research onnon-pharmacologic therapies is needed to better evaluate their effectiveness. (alzheimer’s association, : ) ( ) …nonpharmacologic therapies have not been shown to alter the course of alzheimer’s disease. however, compared with pharmacologic treatments, relatively few non-pharmacologic therapies have been tested in multiple large randomized controlled studies and В и п . ( ) / shown consistent results. additional research on nonpharmacologic therapies is needed to better evaluate their effectiveness (alzheimer’s association, : ). the framing of music therapy as ‘nonpharmacological intervention’ by lanctôt et al. ( ) is construed along similar lines identifi ed in alzheimer’s disease facts and fi gures by alzheimer’s association ( ; ). lanctôt et al. ( ) note that many studies involving music therapy are small and qualitative, which report benefi ts that can not besupported quantitatively. whilst acknowledging the evidence for effi cacy of music therapy interventions, lanctôt et al. ( ) indicate that the standard of the current state-of-the-art research involving music therapy is generally low. in contrast to the afore-mentioned approaches, the framing of music therapy as a nonpharmacological intervention is also characterised by a positive (shahinfard et al., ; yang et al., ) and neutral discursive tonality (ogundale & ray, ). to illustrate, ogundale and ray ( ) frame music therapy as a neutral and standard means of the non-pharmacological treatment for dementia, which ‘may become recognized as a standard treatment option for dementia in lagos, nigeria’. yang et al. ( ) posit that music therapy is an effective treatment in dementia. yang and the colleagues ( ) have measured the effectiveness of music therapy by means of examining the neural basis in fmri. yang et al. ( ) frame their positive narrative of music therapy as a nonpharmacological treatment by showing that the clients with alzheimer’s dementia have signifi cantly greater activation with familiar music in the superior and middle temporal gyrus, pars triangularis, right insula, right inferior frontal gyrus, and left supplementary motor area. these fi ndings have led yang et al. ( ) to suggest that clients with alzheimer’s dementia pay more attention to familiar music, which can be successfully applied to facilitate dementia management in clients with alzheimer’s. the framing of music therapy as a nonpharmacological intervention by shahinfard et al. ( ) is analogous to that by yang et al. ( ). specifi cally, shahinfard and the colleagues ( : ) suggest that Психолінгвістика . Психолингвистика . p s y c h o l i n g u i s t i c s ( ) …music therapy has been proposed as a safe and effective treatment for patients with alzheimer disease (ad). we hypothesized that a -week, twice weekly, -minute mt intervention would improve behavioural and clinical outcomes in patients with mild to moderate ad, and the clinical improvements will be correlated with changes in brain activation measured by fmri during passive listening to music. shahinfard and the colleagues ( ) report the increase in fmri activation patterns during passive listening to familiar and unfamiliar music in clients with alzheimer’s. shahinfard et al. ( ) have confi rmed that the activation pattern of the brainduring the processing of familiar and unfamiliar music isdifferent after music therapy interventions. the frame ‘caregiver’ the frame ‘caregiver’ has been identifi ed in research articles by beynon et al. ( ) and yu-ying ( ). the framing of music therapy by beynon et al. ( ) involves a collaborative choral programme comprised of clients with alzheimer’s disease and their caregivers. music therapy in a choir provides respite, reunion, and learning opportunities for caregivers and clients with alzheimer’s disease (ibid.). it is evident from beynon et al. ( ) that the framing of music therapy as ‘caregiver’ involves discursive themes associated with learning about singing, about personhood and identity, client – caregiver relationships, as well as affective and aesthetic engagement. similar interactive music therapy activities are proposed by yu-ying ( ). these activities involve an interactive course «love microphone», designed for dementia caregivers. the interactive nature of the caregiver involvement in the song course is evident from excerpt ( ) below: ( ) each family prepared a song, after singing to encourage other partners’ applause from the scene. when fi nished, go back to caregiver support groups, sharing the moment with each other feelings, through personal involvement, observation and discussion, release emotions and perceptions. (yu-ying, ). the frame ‘apathy’ the frame ‘apathy’ has been identifi ed in the review article by lanctôt and her colleagues ( ). with the main focus of the article being on apathy, the authors mention music therapy as one of В и п . ( ) / many other nonpharmacological means of the management of apathy. these means are referred to by lanctôt et al. ( ) as cooking, exercise, pet therapy, and multisensory stimulation, etc.lanctôt et al. ( : ) posit that ‘improvements in apathy have been reported with interventions that are creative, for example, music and art, employ reminiscence therapy, use skills training, problem solving, and cognitive behavioural techniques…’. however, the authors conclude that future studies should examine and quantify the combinations of drug treatments with nonpharmacological treatments. the frame ‘agitation’ the framing of music therapy as a means of managing agitationis present in ray and maier ( ), and in sullivan et al. ( ). ray and maier ( ) emphasise that music has the effect of lessening agitation in people who are diagnosed with alzheimer’s disease. this narrative of music therapy in ray and maier ( ) seems to be basedupon two frames, ‘agitation’ and ‘caregiver’, respectively. the frame ‘agitation’ is used as a background, against which the framing of music therapy via the frame ‘caregiver’ takes place. the ‘caregiver’ frame is associated with certifi ed nursing assistants (cnas) who assist with music-based activities aimed at facilitating agitation and other symptoms in clients with alzheimer’s. sullivan et al. ( ) posit that nonpharmacological approaches are necessary for people with dementia, who often experience agitation and anxiety. analogous to ray and maier ( ), sullivan and the colleagues ( ) co-frame music therapy by evoking two concurrent frames, ‘agitation’ and ‘caregiver’. caregivers may be included in these forms of treatment. sullivan et al. ( ) suggest thatmusic and other nonpharmacological interventions with patients with alzheimer’sand caregivers are effective in decreasing caregiver burden and patient agitation and anxiety. in the context of the clients’ agitated behavior, music therapy is suggested as a safe and effective means for its treatment. the frame ‘behavioural symptoms’ the frame ‘behavioural symptoms’ has been identifi ed in the research papers by beynon et al. ( ), hsiung et al., ( ), kim et al ( ), and schall et al. ( ). beynon et al. ( ), kim et al. ( ), and schall et al. ( ) frame music therapy as effective Психолінгвістика . Психолингвистика . p s y c h o l i n g u i s t i c s in improving cognition, behavioral and psychological symptoms, and quality of life of clients with dementia. these authors frame their narrative about music therapy as one of many other forms of nonpharmacological interventions, e.g. art: ( ) creative therapeutic approaches such as art or music therapy enable communicative resources to be supported and alternative access paths to the world of experience to be developed among people suffering from dementia. empirical evidence demonstrating the effi cacy of music therapy in dementia, particularly with regard to the enhancement of emotional well-being and special aspects of communication behavior, is available (schall et al., : ). hsiung and the colleagues ( ) frame music therapy as benefi cial in improving the clients’ behavioural symptoms. hsiunget al. ( ) suggest that music therapy has benefi cial effects on managing behavioural symptoms in clients with alzheimer’s and decreasing stress as measured by morning cortisol levels. hsiung et al. ( : ) posit that music therapy can be offered as a safe alternative to pharmacological treatment in managing the clients’ behavioural symptoms. the frame ‘memory and cognitive function’ the framing of music therapy in dementia via ‘memory and cognitive function’ is present in research articles by innes et al. ( ) and li et al. ( ). innes et al. ( ) indicate that music therapy in conjunction with other interventions, such as meditation, lead to marked improvements in both memoryand cognitive performance. innes et al. ( ) suggest that music therapy and other forms of mind-body interventions may be effective in enhancing memory and cognitive function in adults, with improvements sustained atsix months. whilst innes et al. ( ) are positive in their framing, li et al.’s ( : – )narrative of music therapy in dementia is more cautious: ‘no apparently additional benefi ts of this mt were noted in the globally cognitive assessments for months’. conclusions the present article involves a qualitative investigation of the framing of music therapy in dementia discourse published by alzheimer’s and В и п . ( ) / dementia in – . the results of the framing analysis indicate that music therapy in alzheimer’s and dementia is construed by several frames, such as ‘nonpharmacological intervention’, ‘caregiver’, ‘apathy’, ‘agitation’, ‘behavioural symptoms’, and ‘memory and cognitive function’. the framing analysis has revealed that the frame ‘nonpharmacological intervention’ appears to be embedded into the series of other frames and serves as their neutral background. the present fi ndings can be taken to indicate that an overarching idea of the music therapy narrative published by alzheimer’s and dementia in – involves a polyphonic discursive space. this space seems to be primarily structured by the frame ‘nonpharmacological intervention’. however, the polyphony of this discursive space is construed by a range of stand-alone (‘memory and cognitive function’) and interrelated frames (‘apathy’, ‘agitation’, ‘behavioural symptoms’). it can be concluded that the polyphonic discursive space associated with the music therapy narratives published by alzheimer’s and dementia in – is characterised by ‘inconsistent effects on disruptive behaviours, anxiety levels, depressive moods and cognitive functioning in people with dementia’. 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УДК ’ ПРОБЛЕМАТИКА МУЗИЧНОЇ ТЕРАПІЇ У НАУКОВИХ ПУБЛІКАЦІЯХ, ЩО ВИСВІТЛЮЮТЬ ПРОБЛЕМУ ДЕМЕНЦІЇ Олександр Капранов кандидат філологічних наук, доцент, пост-докторський дослідник, Університет Бергену, Норвегія, p.o.box , м. Берген , oleksandr.kapranov@uib.no АНОТАЦІЯ Статтю присвячено аналітичному вивченню проблематики музичної терапії, пов’язаної з деменцією. Метою дослідження є встановлення того, як музична терапія деменції оформлена в наукових текстах, В и п . ( ) / опублікованих в журналі alzheimer’s and dementia протягом періоду часу з року до кінця року. Корпус дослідження складається з наукових статей, опублікованих в «alzheimer’s and dementia». Результати аналізу показують, що музична терапія в «alzheimer’s and dementia»витлумачена як такими фреймами, як- от: «Немедикаментозне втручання», «Няні», «Апатія», «Збудження», «Поведінкові симптоми», «Пам’ять і когнітивні функції». Ключові слова: хвороба Альцгеймера, деменція, музична терапія, фрейм. УДК ’ ПРОБЛЕМАТИКА МУЗЫКАЛЬНОЙ ТЕРАПИИ В НАУЧНЫХ ПУБЛИКАЦИЯХ, КОТОРЫЕ ОСВЕЩАЮТ ПРОБЛЕМУ ДИМЕНЦИИ Александр Капранов кандидат филологических наук, доцент, пост-докторский исследователь, Университет Бергена, p.o.box , г. Берген, Норвегия, oleksandr.kapranov@uib.no АННОТАЦИЯ Статья посвящена аналитическому изучению проблематики музыкальной терапии, связанной с деменцией. Целью данного исследования является установление того, как музыкальная терапия деменции оформлена в научных текстах, опубликованных в журнале «alzheimer’s and dementia» в период с – до конца года. Корпус исследования состоит из научных статей, опубликованных в журнале «alzheimer’s and dementia». Результаты анализа показывают, что музыкальная терапия в «alzheimer’s and dementia» истолкована таких фреймах, как: «Немедикаментозное вмешательство», «Няни», «Апатия», «Возбуждение», «Поведенческие симптомы», «Память и когнитивные функции». Ключевые слова: болезнь Альцгеймера, деменция, музыкальная терапия, фрейм Подано до редакції . . Рецензовано . . Прийнято до друку . . the perception of ecosystem services of mountain farming and of a local cheese: an analysis for the touristic valorization of an inner alpine area sustainability article the perception of ecosystem services of mountain farming and of a local cheese: an analysis for the touristic valorization of an inner alpine area rebecca montrasio , silvana mattiello ,* , martina zucaro , dino genovese and luca battaglini department of agricultural and environmental sciences—production, landscape, agroenergy, university of milan, milan, italy; rebecca.montrasio@gmail.com department of agricultural, forestry and food sciences, university of turin, grugliasco (to), italy; zucaro.martina@gmail.com (m.z.); dino.genovese@unito.it (d.g.); luca.battaglini@unito.it (l.b.) * correspondence: silvana.mattiello@unimi.it; tel.: + - - - received: june ; accepted: september ; published: september ���������� ������� abstract: mountain husbandry systems and their related products may directly or indirectly provide either ecosystem services (ess) or disservices to humanity. the present study aims to evaluate the perception that a local mountain community has towards animal husbandry in the lanzo valleys (piedmont, italy) and towards the typical local dairy product, toma di lanzo, as well as to investigate the consumers’ habits and preferences, to detect possible positive impacts on mountain tourism. a questionnaire was delivered to respondents. the perception of the impact was scored using a five-point likert scale. the results show a very positive perception of the product toma di lanzo because of its origin and type of processing, with different perceptions of the local society depending on age (p < . ), residence (p < . ), and education level (p < . ). the respondents had a very positive awareness of the impact of mountain livestock farming in the lanzo valleys. the most important perceived ess are cultural identity and maintenance of local breeds. women, non-residents, and respondents with an intermediate education level generally had a more positive perception of ess. there was a very low perception of disservices derived from mountain animal farming. the main perceived obstacles to the spread of benefits derived from these farming systems were the scarce presence of specific supporting politics and the low income generated by mountain farming activities. the coexistence of touristic activities and extensive livestock farming systems has to be associated with a better promotion of mountain products like toma di lanzo to improve the sustainability of mountain regions. keywords: italian alps; ecosystem services; mountain farming; typical dairy products; local communities . introduction the concept of ecosystem services is rooted in the simple notion that humanity is dependent on the natural environment in which it lives [ ]. according to the millennium ecosystem assessment [ ], ecosystem services (ess) are defined as “the direct and indirect benefits that ecosystems provide to humanity” and are divided into four categories: provisioning (material or energy outputs), regulating (biophysical processes providing benefits such as climate regulation or water purification), supporting (processes that allow the functioning of other ecosystems that, in turn, provide other services, such as nutrient cycles, soil formation, photosynthesis, or pollination), and cultural (recreational, aesthetic, and spiritual benefits). mountain agro-ecosystems are defined by [ ] as highly multifunctional, since, in addition to providing private goods, they also offer a wide range of public goods. in particular, mountain livestock sustainability , , ; doi: . /su www.mdpi.com/journal/sustainability http://www.mdpi.com/journal/sustainability http://www.mdpi.com https://orcid.org/ - - - x http://www.mdpi.com/ - / / / ?type=check_update&version= http://dx.doi.org/ . /su http://www.mdpi.com/journal/sustainability sustainability , , of farming systems are peculiar ecosystems based on the direct use of pastures by animals, and they provide several provisioning services to humanity, among which the most recognized is that of supplying food, leather, fiber, and manure [ ]. additionally, they provide many non-provisioning services that are extremely relevant for society, such as genetic conservation, water regulation and purification, pollination, landscape maintenance, recreational activity, ecotourism, the production of cultural heritage, and others [ ], whose economic quantification is difficult, as they are difficult to privatize. furthermore, depending on the intensity of the production system and on the use of resources [ , ], livestock farming systems can also be responsible for the production of disservices, such as damage to the landscape, the hydrology, and the environment [ ]. unfortunately, nowadays, we are assisting in a crisis of mountain livestock systems characterized by a progressive/gradual abandonment of marginal agricultural areas and by a progressive specialization on a few production processes at the expense of the high product diversification that occurred during the historical periods of the highest demographic peaks [ ]. during the th century, this marginalization process, which occurred mainly in inhabited intermediate mountain slopes, has been progressively increasing, and at the same time, we assisted a rapid development of the large alpine valley bottoms and the adjacent plain areas. this dynamic, also typical for the northwestern italian alps, was particularly favored by the migration of local mountain people towards big factories and urban centers in the plains [ – ], thus creating crisis conditions for the traditional alpine identity and the progressive marginalization of alpine spaces [ ]. the number of traditional livestock farms in the middle mountains, mainly oriented to local/typical cheese production, has been significantly decreasing, and many of them had to modify their traditional characteristics in order to maintain economic sustainability [ ]. as a consequence of the abandonment and change of these systems, many meadows and pastures turned into forested areas, most of the traditional rural buildings collapsed, and water minute regulation and terracing have been gradually disappearing. in the context of alpine regions, this mountain agricultural crisis of pasture-based systems determined the substantial loss of relevant landscape outlines (also particularly relevant for tourism [ ]) and of other fundamental ecosystem services [ ], including the loss of typical food products, which are also assuming a growing importance for tourists [ – ], and which may thus help in the valuation of mountain livestock systems by increasing their economic sustainability. for these reasons, the survival of these systems is strategic for safeguarding the cultural heritage they represent, (also from a touristic point of view), which would be possible only if they become part of a local system’s programming [ – ]. unfortunately, the surviving traditional mountain livestock farms are characterized by a low spirit of enterprise, which is mainly family-centered [ ]. their products cannot compete with markets of larger areas, and only the integration of their income with touristic multiservice approaches may allow the farms to have economic sustainability [ , ]. the european union has also acknowledged the identification and the promotion of local products from mountain farming systems as a priority case through the “mountain product” label as a strategy to sustain local development politics of alpine valleys [ , , ]. the strong geographical connotation derived from labeling may, in fact, generate an added value for mountain products [ , , ]. however, all these processes need to be sustained both by the community and by an innovative process of change that farmers should initiate [ , ]. in order to value ecosystem services, it is important to underline that provisioning services can be marketed as “private goods” at a market price, whereas supporting, regulating, and cultural services are often grouped as “non-provisioning” services and they are “public”: all individuals can use them, and their use by one subject does not reduce their availability for others [ ]. therefore, their economic value is often invisible, and most of the time, they are taken for granted. for this reason, it is important to quantify not only their economic value, but also their socio-cultural value, both for local communities [ ] and for visitors (e.g., tourists). socio-cultural values play an important role in determining the quality of natural ecosystems: they are a crucial source of well-being and are indispensable for maintaining a sustainable society. however, they are not easy to measure, but they sustainability , , of can be estimated on the basis of the evaluation of people’s preferences and on their decision-making processes, and this requires a socio-cultural approach typical of social sciences [ ]. in the process of economic evaluation of ecosystem services, a preliminary step is the knowledge of their perception and the social value attributed to them by the different social actors [ , ]; this information is essential for the understanding of their repercussions on tourist attendance and on the maintenance of open spaces [ ]. the awareness of the value of the agricultural landscape and its scenic beauty comes from the perception of ecosystem services and can be evaluated through them [ ]. in the frame of tourism enhancement projects based on local mountain products, it becomes interesting to evaluate what perception exists with respect to a product that bears in its specific denomination a reference to an alpine territory or a valley [ , ]. consumers expect mountain agriculture to be local and mountain products to be healthier than products from other territories [ ]. however, research shows that, unlike consumers who live or frequent mountain contexts, some urban consumers find it difficult to recognize the real characteristics of mountain farming systems in the product [ , , ]. in particular, these studies highlight that urban consumers ignore the ecosystem services connected to the product and to its origin in a pastoral landscape [ , ]. a deeper knowledge of the landscape origin and of the related food products may serve as a collective contribution to the sustainability of the fragile sector of mountain farming, for example, through the direct consumption on site of local products and through on-farm visits, as shown for the typical fontina cheese in valle d’aosta [ ]. a typical food product, in fact, is a central element in tourism and can be considered as a useful tool to guarantee a strong identity of a geographic area [ ], and cheese in particular can be considered as a tourism resource [ ]. in the context described above, the evaluation of the perception of ecosystem services and disservices generated by livestock farming for producing typical cheese in an alpine area, as well as the direct knowledge and perception of that product, would be extremely important in order to allow a better compensation of these activities not only in the light of their productive expressions, but also considering all other services and the roles played by these ecosystems for the territory and the society [ ], also in terms of touristic valorization [ ]. a previous work centered on local farmers [ ], which was carried out in the lanzo valleys to understand the role of the typical local cheese, toma di lanzo, for the survival and for the sustainability of the traditional small-scale production system, highlighted the importance of a process aimed at product innovation (e.g., integration of agritourist services in mountain pastures and marketing) and system innovation (networks between companies and with different local territorial subjects). however, reference [ ] did not take into account the point of view of the local community, represented by residents and visitors; therefore, in this paper, we aim to integrate this scenario with the missing information, i.e., the role of the local community and its perception of the ecosystem services and disservices of mountain livestock farming systems, as well as of a typical local dairy product, in an alpine territory included in the italian strategy for inner areas, the lanzo valleys [ ], in order to highlight possible strategies for the sustainable development of the area. consumers’ habits and preferences towards toma di lanzo were also investigated to understand the value of the product for tourism and other economic activities, and eventually to answer to the question: can the perception by the local community of the ecosystem services of livestock farming systems and their related mountain products be helpful for the potential touristic development of an inner area? . materials and methods . . study area the research was carried out in the lanzo valleys, a territory formed by three valleys (val grande di lanzo, val d’ala, and val di viù) converging towards the lanzo torinese township, located at km from turin in the piedmont region (western italian alps) (figure ). sustainability , , of sustainability , , x for peer review of figure . location of the lanzo valleys (in red) in northern italy (reference frame: wgs /utm n). the territory has a surface area of km and an altitudinal range between and m above sea level (a.s.l.) [ ]. the last census ( ) reports a resident population of , people, slowly decreasing at a yearly rate of % [ ]. this trend is linked to the fact that out of municipalities in the lanzo valleys have been classified as “peripheral”, presenting problems that affect the local quality of life (e.g., scarce infrastructures and accessibility problems typical of marginal mountain areas, with long travel times to reach the main basic services). since the th century, the lanzo valleys have been involved in an important touristic development [ ], above all with summer residences. however, this development has not been successful in preventing a demographic depopulation during the last century that affected the whole piedmont mountain territory. reference [ ] evidenced a progressively increasing loss of elements of the anthropogenic landscape and the gradual afforestation of meadows, pastures, and terraced fields between and . for these reasons, the geographic area of the lanzo valleys has been included in the italian strategy for inner areas [ ]. according to the national database of the zootechnical registry [ ], in the lanzo valleys, there are cattle farms, with heads, plus a few dairy goat and sheep farms. the most common cattle breeds are simmental, pustertaler sprinzen (barà), valdostana pezzata rossa, valdostana castana, piemontese, tarentaise, a few valdostana pezzata nera, and many crossbreeds. the typical dairy product of this area is the toma di lanzo, which is a medium-seasoned, semi-hard cheese made of whole or partially skimmed raw cattle milk. the “association of toma di lanzo producers” was established in may and drew up a specification for the production of toma. in addition, the association has implemented a traceability system for the toma di lanzo produced in the upper lanzo valleys and in alpine pastures in accordance with uni en iso : . finally, in , toma di lanzo became one of the traditional agri-food products. . . data collection data were collected through a survey carried out by means of a questionnaire adapted from other questionnaires used in similar studies [ , – ]. the questionnaire consisted of questions, divided into three sections: ) socio-cultural characteristics of the respondents; ) consumers’ habits and preferences of the product toma di lanzo, and perception of the impact of the product on the figure . location of the lanzo valleys (in red) in northern italy (reference frame: wgs /utm n). the territory has a surface area of km and an altitudinal range between and m above sea level (a.s.l.) [ ]. the last census ( ) reports a resident population of , people, slowly decreasing at a yearly rate of % [ ]. this trend is linked to the fact that out of municipalities in the lanzo valleys have been classified as “peripheral”, presenting problems that affect the local quality of life (e.g., scarce infrastructures and accessibility problems typical of marginal mountain areas, with long travel times to reach the main basic services). since the th century, the lanzo valleys have been involved in an important touristic development [ ], above all with summer residences. however, this development has not been successful in preventing a demographic depopulation during the last century that affected the whole piedmont mountain territory. reference [ ] evidenced a progressively increasing loss of elements of the anthropogenic landscape and the gradual afforestation of meadows, pastures, and terraced fields between and . for these reasons, the geographic area of the lanzo valleys has been included in the italian strategy for inner areas [ ]. according to the national database of the zootechnical registry [ ], in the lanzo valleys, there are cattle farms, with heads, plus a few dairy goat and sheep farms. the most common cattle breeds are simmental, pustertaler sprinzen (barà), valdostana pezzata rossa, valdostana castana, piemontese, tarentaise, a few valdostana pezzata nera, and many crossbreeds. the typical dairy product of this area is the toma di lanzo, which is a medium-seasoned, semi-hard cheese made of whole or partially skimmed raw cattle milk. the “association of toma di lanzo producers” was established in may and drew up a specification for the production of toma. in addition, the association has implemented a traceability system for the toma di lanzo produced in the upper lanzo valleys and in alpine pastures in accordance with uni en iso : . finally, in , toma di lanzo became one of the traditional agri-food products. . . data collection data were collected through a survey carried out by means of a questionnaire adapted from other questionnaires used in similar studies [ , – ]. the questionnaire consisted of questions, divided into three sections: ( ) socio-cultural characteristics of the respondents; ( ) consumers’ sustainability , , of habits and preferences of the product toma di lanzo, and perception of the impact of the product on the territory; ( ) perception of services and disservices provided by mountain farming in the lanzo valleys. in this last section, we proposed a list of ecosystem services—provisioning, regulating, supporting, or cultural—and disservices, which are listed in detail in table . table . list and description of services (provisioning, regulating, supporting, or cultural) and disservices proposed in the interview. service description control of invasive species b control of invasive species of flora and fauna (e.g., weed control) control of soil erosion b prevention of land degradation and soil erosion (the roots of trees and grass ensure stability and soil retention, decreasing the risk of erosive phenomena) cultural identity d cultural identity and sense of belonging to the valleys environmental education d education of general public in a correct behavior and respect for the environment fire control b fire prevention by means of control of bush encroachment food production a production of meat, milk, cheese, etc. habitat maintenance c habitat maintenance for other animal species (e.g., creation of shelters or nesting areas for wild fauna) improvement of water quality b improvement of water quality by its purification and regulation of its infiltration in the soil inspiration for arts and culture d inspiration for arts (e.g., painting, photographs, music, etc.) and culture (literature, poetry, etc.) maintenance of biodiversity a maintenance of biodiversity, e.g., in terms of number of plant species present on pasture maintenance of landscape d preservation of a typical landscape (e.g., maintenance of pastures, paths, and villages used by farmers) maintenance of local breeds c genetic conservation of local/autochthonous breeds pollination b dispersion of seeds and pollen into the environment, favoring the growth of new plants production of fertilizers a production of natural fertilizers (e.g., manure) as an alternative to chemical fertilizers production of wool and leather a production of wool, other fibers, or leather recreational opportunities d recreational opportunities for tourists (e.g., farmhouses, sports involving animals, pet therapy, etc.) religious experiences d religious experiences (religious festivals and pilgrimages, blessings, patron saints, presence of places of worship) soil fertilization b direct soil fertilization (i.e., animals supply nutrients to the surrounding vegetation) disservice greenhouse gas emissions increased emission of greenhouse gases (e.g., methane, nitrous oxide) loss of biodiversity reduction of the variety of plant species loss of landscape reduction of the variety of landscapes lower air quality air contamination (e.g., bad smells) lower animal welfare lower levels of animal welfare, e.g., due to mistreatment, dirtiness, poor hygienic conditions lower environmental cleanness dirtiness of the roads, meadows, or other parts of the territory because of defecation by animals lower food quality production of poor-quality food soil erosion soil erosion, e.g., due to the excessive trampling by animals water pollution and consumption pollution and excessive consumption of water a provisioning service; b regulating service; c supporting service; d cultural service. sustainability , , of the english translation of the questionnaire can be retrieved from https://docs.google.com/forms/d/ e/ faipqlscmhghpjhhokxgiflterbezlfuqc sugkxzhmhlphedbftmdw/viewform?usp=sf_link. the survey was carried out using a digital questionnaire created with google forms, available at the above cited link. additionally, a few direct interviews were carried out during specific local meetings focusing on toma di lanzo. data collection lasted for about one and a half months (from / / to / / ) and allowed the collection of questionnaires, % of which were compiled online, and only % were collected from direct interviews. only persons who knew the lanzo valleys (either because they resided there, or because they frequented the area as tourists) were included in the sample. this questionnaire was disseminated through word of mouth and sharing on channels such as whatsapp and e-mail, as well as by sharing the link within social networks such as facebook, selecting target groups related to the territory of the lanzo valleys and to the toma di lanzo product (e.g., facebook pages such as. associazione produttori toma di lanzo, unione montana valli di lanzo, ceronda e casternone, uncem piemonte, or facebook groups such as valli di lanzo... storia foto tradizioni leggende e costume, eventi valli di lanzo). in total, groups and facebook pages were identified. the compilation of the digital questionnaire was also promoted with the help of the toma di lanzo producers association and thanks to an article in a local journal [ ]. . . data analysis the perception of the impact was scored by using a five-point likert scale ( = very negative; = negative; = neutral; = positive; = very positive for ess; = null; = scarce; = medium; = high; = very high for disservices). scores are expressed as means ± standard errors (s.e.). a multivariate principal component analysis (pca) and a hierarchical cluster analysis were initially carried out on impact scores for preliminary data exploration. the scores were also compared using univariate analysis by a mann–whitney test depending on sex (males vs. females), age class ( – y vs. – y vs. > y), school level (low (primary school) vs. intermediate (high school) vs. high (university or postgraduate degree)), residence (residents vs. non-residents), and cultural background (agricultural vs. non-agricultural). all the analyses were carried out using spss version . . results . . characteristics of the respondents the respondents were rather balanced with respect sex: . % were females and . % were male; most of them ( . %) were aged between and years, % were over years old, and . % were between and years old. as to education level, only . % had a basic education (primary school = . % and lower secondary school = . %), whereas . % of the respondents had an intermediate education level (high school diploma), and . % had a university or postgraduate degree. more than half of the respondents ( . %) were residents in the lanzo valleys, while . % were not, being represented mainly by tourists and by people who knew the territory because they resided in the neighboring areas. finally, it is interesting that only . % of the respondents were farmers, while . % of subjects were unrelated to the agricultural sector. . . the toma di lanzo product most of the respondents ( %) had consumed toma di lanzo for more than two years, . % for less than two years, and . % had never tasted it. among the consumers ( subjects), . % normally buy the product directly from the producer, % in a store, . % from friends and relatives, . % at the market, and . % from various sources; . % declared that they produce toma di lanzo. for . % of the respondents who consumed toma di lanzo, the most important driver to buy the product was the place of origin, while . % believed that it is essential to consider the type of production, . % purchase the product when it presents the toma di lanzo certification of the https://docs.google.com/forms/d/e/ faipqlscmhghpjhhokxgiflterbezlfuqc sugkxzhmhlphedbftmdw/viewform?usp=sf_link https://docs.google.com/forms/d/e/ faipqlscmhghpjhhokxgiflterbezlfuqc sugkxzhmhlphedbftmdw/viewform?usp=sf_link sustainability , , of producers association, % thought that the health characteristics of the product are fundamental, and . % considered the price a crucial factor. most of the respondents ( . %) believed that toma di lanzo is better than similar products, such as other toma cheeses produced in piedmont, while only . % thought it is worse. for . % of the sample, there were few differences among various toma cheeses; . % believed that there are differences, but not necessarily that they were better or worse, and . % could not answer the question about the difference between toma di lanzo and similar products. to the question “would you be willing to pay more for the toma di lanzo product with the certification of the association of toma di lanzo producers?”, only % of the respondents answered “no”. most of the respondents ( . %) answered that they were willing to pay more for the certified toma di lanzo, while . % of them did not know about the “toma di lanzo” certification. of the subjects willing to pay more for the certified toma di lanzo, . % were willing to pay % to % more than the price of a similar product; . % were willing to pay % to % more, . % from % to % more, and . % would pay even % more than for a non-certified “toma” type cheese. almost all the respondents ( . %) believed that toma di lanzo is closely linked to the territory and culture of the lanzo valleys, and % of them thought that its production outside this area would lose value. most of the respondents ( . %) agreed that food products derived from mountain farming contribute to improving the economy in the lanzo valleys. a total of . % of the subjects believed that products obtained from mountain farming have an extra value compared to products produced elsewhere. however, . % of them believed that this extra value was not adequately communicated to the consumer at the time of sale, and suggested several approaches in order to value the toma di lanzo product. for example, they believed that it is important that producers/sellers inform consumers by exposing the history of the product, starting from animal breeding up to the description of the cheese-making process. they also suggest that at the time of the sale, it would be interesting “to exhibit photos of mountain pastures and photos of the cheese processing phases (before, during, and after).” further suggestions included the organization of guided visits to the mountain pastures where the animals are farmed and the toma is produced, and the promotion of the product through social media, marketing actions, and ad hoc exhibitions dedicated to toma di lanzo. product labeling, traceability, use of brands such as “protected designation of origin” (pdo) or “mountain product”, and the inclusion of more information and images representative of the product and type of production in the product label were also suggested. finally, several subjects highlighted a lack of interest and participation by public bodies in the promotion and enhancement of the territory and its typical products. as to the local impact of the product, the interviewees believed that toma di lanzo has a positive impact on the territory and ecosystems (score . ± . ), human welfare ( . ± . ), and society of the lanzo valleys ( . ± . ), and a rather positive/neutral impact on the environment ( . ± . ). significant differences were recorded between sexes for the perception of the impact on the territory and ecosystems (males: . ± . , females: . ± . ; p = . ), as well as among age classes ( – y: . ± . , – y: . ± . , > y: . ± . ; p = . ), education levels (low: . ± . , intermediate: . ± . , high: . ± . ; p < . ), and residence (non-residents: . ± . , residents: . ± . ; p = . ) for the perception of the impact on the society of the lanzo valleys. . . perception of ecosystem services and disservices in general, all the ecosystem services—either provisioning, regulating, supporting, or cultural— proposed in the interview obtained a good or very good score. the service that obtained the highest average score was the “maintenance of landscape”. on the contrary, the aspect that obtained the lowest average score was the production of wool and leather, with an average value that shows a perception of only a fairly positive impact of animal husbandry on the production of leather and wool within the territory of the lanzo valleys (figure ). sustainability , , of sustainability , , x for peer review of . . perception of ecosystem services and disservices in general, all the ecosystem services—either provisioning, regulating, supporting, or cultural—proposed in the interview obtained a good or very good score. the service that obtained the highest average score was the “maintenance of landscape”. on the contrary, the aspect that obtained the lowest average score was the production of wool and leather, with an average value that shows a perception of only a fairly positive impact of animal husbandry on the production of leather and wool within the territory of the lanzo valleys (figure ). figure . average scores (± s.e.) of the perception of ecosystem services provided by mountain farming, expressed on a five-point likert scale (from = very negative to = very positive). services are classed according to the millennium ecosystem assessment (ma, ) as follows: (a) provisioning services; (b) regulating services; (c) supporting services; (d) cultural services. multivariate analysis (pca and cluster analysis) could not highlight clear trends in data distribution depending on sex, age class, education level, residence, or cultural background. however, univariate analysis showed some significant differences that will be presented and discussed. females had a higher perception of ess than males, with significant differences of the effect on maintenance of local breeds (p = . ), improvement of water quality (p < . ), pollination (p < . ), and cultural identity (p < . ) (figure ). the perception of ess was statistically lower for respondents with a low education level than for the other two categories, with the highest scores assigned by subjects with a medium education level, and significant differences recorded for pollination (low: . ± . ; intermediate: . ± . ; high: figure . average scores (± s.e.) of the perception of ecosystem services provided by mountain farming, expressed on a five-point likert scale (from = very negative to = very positive). services are classed according to the millennium ecosystem assessment (ma, ) as follows: (a) provisioning services; (b) regulating services; (c) supporting services; (d) cultural services. multivariate analysis (pca and cluster analysis) could not highlight clear trends in data distribution depending on sex, age class, education level, residence, or cultural background. however, univariate analysis showed some significant differences that will be presented and discussed. females had a higher perception of ess than males, with significant differences of the effect on maintenance of local breeds (p = . ), improvement of water quality (p < . ), pollination (p < . ), and cultural identity (p < . ) (figure ). the perception of ess was statistically lower for respondents with a low education level than for the other two categories, with the highest scores assigned by subjects with a medium education level, and significant differences recorded for pollination (low: . ± . ; intermediate: . ± . ; high: . ± . ; p < . ) and habitat maintenance (low: . ± . ; intermediate: . ± . ; high: . ± . ; p < . ). sustainability , , of sustainability , , x for peer review of . ± . ; p < . ) and habitat maintenance (low: . ± . ; intermediate: . ± . ; high: . ± . ; p < . ). figure . average scores (± s.e.) of the perception of ecosystem services (classed as: (a) provisioning services; (b) regulating services; (c) supporting services; (d) cultural services) provided by mountain farming, expressed on a five-point likert scale (from = very negative to = very positive) by the two sexes. non-residents showed a more positive perception of out of ess, with significant differences for fire control (p < . ) (figure ). finally, no differences in the perceptions of ess were observed depending on age class or on the cultural background. the aspects of the territory most appreciated by the respondents were the landscape (for . % of the respondents) and its tranquility ( . %), followed by the healthy air ( . %), the possibility to engage in sports and outdoor activities ( . %), and the availability of the healthiest food products ( . %). a total of . % of the respondents declared they agreed with all the points listed, and the remaining part ( . %) preferred to express their personal opinions. for example, an interviewee claimed to appreciate the “clean air, genuine food, tranquility, and being able to raise children with the aforementioned living conditions”; another admired the fact that everyone knows each other and that children can play by themselves in the open air. figure . average scores (± s.e.) of the perception of ecosystem services (classed as: (a) provisioning services; (b) regulating services; (c) supporting services; (d) cultural services) provided by mountain farming, expressed on a five-point likert scale (from = very negative to = very positive) by the two sexes. non-residents showed a more positive perception of out of ess, with significant differences for fire control (p < . ) (figure ). finally, no differences in the perceptions of ess were observed depending on age class or on the cultural background. the aspects of the territory most appreciated by the respondents were the landscape (for . % of the respondents) and its tranquility ( . %), followed by the healthy air ( . %), the possibility to engage in sports and outdoor activities ( . %), and the availability of the healthiest food products ( . %). a total of . % of the respondents declared they agreed with all the points listed, and the remaining part ( . %) preferred to express their personal opinions. for example, an interviewee claimed to appreciate the “clean air, genuine food, tranquility, and being able to raise children with the aforementioned living conditions”; another admired the fact that everyone knows each other and that children can play by themselves in the open air. the impact on all the listed disservices was perceived as low or very low by the respondents (figure ). sustainability , , of sustainability , , x for peer review of figure . average scores (± s.e.) of the perception of ecosystem services (classed as: (a) provisioning services; (b) regulating services; (c) supporting services; (d) cultural services) provided by mountain farming, expressed on a five-point likert scale (from = very negative to = very positive) by residents and non-residents. the impact on all the listed disservices was perceived as low or very low by the respondents (figure ). figure . average scores (± s.e.) of the perception of ecosystem disservices provided by mountain farming, expressed on a five-point likert scale (from = null to = very high). . . possible future constraints finally, the sample was invited to select which constraints could hinder the supply of ecosystem services provided by mountain livestock farming in the lanzo valleys in the future. the respondents could select the different aspects in a multiple-answer question, which is why the total number of answers exceeds the size of the sample. the most perceived constraints were “absence of policies/regulations to support livestock farming in mountain areas” and “insufficient income generated by mountain livestock farming”, which were both selected by respondents. the least figure . average scores (± s.e.) of the perception of ecosystem services (classed as: (a) provisioning services; (b) regulating services; (c) supporting services; (d) cultural services) provided by mountain farming, expressed on a five-point likert scale (from = very negative to = very positive) by residents and non-residents. sustainability , , x for peer review of figure . average scores (± s.e.) of the perception of ecosystem services (classed as: (a) provisioning services; (b) regulating services; (c) supporting services; (d) cultural services) provided by mountain farming, expressed on a five-point likert scale (from = very negative to = very positive) by residents and non-residents. the impact on all the listed disservices was perceived as low or very low by the respondents (figure ). figure . average scores (± s.e.) of the perception of ecosystem disservices provided by mountain farming, expressed on a five-point likert scale (from = null to = very high). . . possible future constraints finally, the sample was invited to select which constraints could hinder the supply of ecosystem services provided by mountain livestock farming in the lanzo valleys in the future. the respondents could select the different aspects in a multiple-answer question, which is why the total number of answers exceeds the size of the sample. the most perceived constraints were “absence of policies/regulations to support livestock farming in mountain areas” and “insufficient income generated by mountain livestock farming”, which were both selected by respondents. the least figure . average scores (± s.e.) of the perception of ecosystem disservices provided by mountain farming, expressed on a five-point likert scale (from = null to = very high). . . possible future constraints finally, the sample was invited to select which constraints could hinder the supply of ecosystem services provided by mountain livestock farming in the lanzo valleys in the future. the respondents could select the different aspects in a multiple-answer question, which is why the total number of answers exceeds the size of the sample. the most perceived constraints were “absence of policies/regulations to support livestock farming in mountain areas” and “insufficient income generated by mountain livestock farming”, which were both selected by respondents. the least voted was: “i don’t think mountain livestock farming offers ecosystem services in this area”, which was selected sustainability , , of by only seven respondents (figure ). some of the interviewees preferred to give their own opinions. for example, some respondents commented that there is a “lack of willingness by local communities to improve breeding conditions and interaction with tourism” and that it would be necessary “to find common sense administrators to defend the fragile mountain ecosystem”, as well as that there is a “poor awareness of the value of one’s work and a poor future vision.” sustainability , , x for peer review of voted was: “i don’t think mountain livestock farming offers ecosystem services in this area”, which was selected by only seven respondents (figure ). some of the interviewees preferred to give their own opinions. for example, some respondents commented that there is a “lack of willingness by local communities to improve breeding conditions and interaction with tourism” and that it would be necessary “to find common sense administrators to defend the fragile mountain ecosystem”, as well as that there is a “poor awareness of the value of one’s work and a poor future vision.” figure . number of votes assigned by the respondents to the major constraints that could hinder the supply of ecosystem services provided by mountain livestock farming in the lanzo valleys. each respondent could select more than one option. . discussion considering the small surface area and the low number of people who reside in the lanzo valleys, the survey involved quite a high number of respondents, which can be considered representative of the context of the lanzo valleys. the use of an online survey certainly played an important role for spreading the questionnaire and allowed the collection of a lot of data in a short time. in fact, most of the questionnaires were filled in on the web. however, this is the possible reason for why the class of subjects over years of age was scarcely represented in our sample, as the survey was mainly disseminated through social networks that are possibly unknown to or not used by elder people. the toma di lanzo cheese is well known in the area, and it is often consumed by most of the respondents, who consider it as an excellent product and believe that a food product obtained from mountain farming represents a source of cultural and economic wealth for the area. this also opens up excellent perspectives for valuing the cheese for so-called cheese tourism, of which several successful examples in many european (e.g., germany france, italy, croatia, slovenia, poland) and non-european countries (e.g., new zealand, costa rica, ecuador, mexico, peru) have recently been reviewed by [ ]. despite the generally positive view of toma di lanzo, some of the respondents found some critical issues in relation to the product’s price and marketing. in addition, respondents noticed a deficiency in terms of information on the cheese’s quality and production process. genovese et al. [ ] agree with this perception and confirm that toma di lanzo is known only by the resident community, but it is not well known outside of the territory of the lanzo valleys. the implementation of a better market positioning strategy, aimed at enhancing the typical characteristics of toma due to the strong link with the territory, may assist farmers and cheese-makers in setting forward actions to improve their typical productions [ ]. the enhancement of such a production chain can, therefore, be useful in the construction of an economic development model of the valleys and for the rehabilitation of the landscape. i don't think mountain livestock farming offers ecosystem services in this area lack of research conflicts for acces to pastures loss of competence on mountain livestock farming socio-political reasons loss of traditional connection between farming and local community insufficient income generated by mountain livestock farming absence of policies/regulations to support livestock farming in mountain areas number of votes figure . number of votes assigned by the respondents to the major constraints that could hinder the supply of ecosystem services provided by mountain livestock farming in the lanzo valleys. each respondent could select more than one option. . discussion considering the small surface area and the low number of people who reside in the lanzo valleys, the survey involved quite a high number of respondents, which can be considered representative of the context of the lanzo valleys. the use of an online survey certainly played an important role for spreading the questionnaire and allowed the collection of a lot of data in a short time. in fact, most of the questionnaires were filled in on the web. however, this is the possible reason for why the class of subjects over years of age was scarcely represented in our sample, as the survey was mainly disseminated through social networks that are possibly unknown to or not used by elder people. the toma di lanzo cheese is well known in the area, and it is often consumed by most of the respondents, who consider it as an excellent product and believe that a food product obtained from mountain farming represents a source of cultural and economic wealth for the area. this also opens up excellent perspectives for valuing the cheese for so-called cheese tourism, of which several successful examples in many european (e.g., germany france, italy, croatia, slovenia, poland) and non-european countries (e.g., new zealand, costa rica, ecuador, mexico, peru) have recently been reviewed by [ ]. despite the generally positive view of toma di lanzo, some of the respondents found some critical issues in relation to the product’s price and marketing. in addition, respondents noticed a deficiency in terms of information on the cheese’s quality and production process. genovese et al. [ ] agree with this perception and confirm that toma di lanzo is known only by the resident community, but it is not well known outside of the territory of the lanzo valleys. the implementation of a better market positioning strategy, aimed at enhancing the typical characteristics of toma due to the strong link with the territory, may assist farmers and cheese-makers in setting forward actions to improve their typical productions [ ]. the enhancement of such a production chain can, therefore, be useful in the construction of an economic development model of the valleys and for the rehabilitation of the landscape. as to the sustainability of the product, toma di lanzo’s productive impacts on the environment, on the territory’s ecosystem, on society, and on human well-being are well recognized. in fact, the interviewees positively assessed all these aspects (figure ). sustainability , , of from our results, it emerged that the interviewees had a purely positive vision of the impact of mountain livestock farming related to the supply of ess. the most positively perceived service is the one related to the “maintenance of landscape”, followed by the aspects of “cultural identity” and “maintenance of local breeds”. in a similar study within another alpine area, reference [ ] also identified the maintenance of a traditional and natural landscape as one of the services that achieved the highest scores. interestingly, in a swedish region [ ], where neither cheese consumers nor cheese producers have strict relationships with the local territory or with its history, a high value was attributed to cultural heritage/food traditions and to the place and its history, as well as to the natural landscape and the presence of grazing animals, showing that these values are important even in different contexts. overall, our results are in line with those of other studies, showing a tendency of respondents to have a positive perception of the impact of mountain livestock farms on ess [ , – ]. in our study, the service that obtained the lowest degree of perception was the one related to leather and wool production. this result may be explained by the fact that, since the s, the production of wool has started to decline due to the increasing importance and production of synthetic fibers [ ]. according to our results, the perceptions of the impacts of toma di lanzo production and of ess provided by mountain farming were affected by socio-demographic factors like sex, education level, and residence. in accordance with the study by [ ], women evaluated the impact of breeding more positively than men, particularly for the following ess: “maintenance of local breeds”, “improvement of water quality”, “pollination”, and “cultural identity”. the impact of the production of toma di lanzo is perceived as more positive by respondents with a medium or high education level than by respondents with a lower education level, with significant differences for the impact on the society of the lanzo valleys, confirming that the search for information and personal knowledge can have a strong influence on consumer attitudes and perception [ ]. the educational level of the interviewees also significantly affected the perception of the impact of livestock breeding on two ess: “pollination” and “habitat maintenance”. individuals with the lowest education level had a more negative perception than the other categories. this suggests that a higher level of education could be associated with a greater perception of ess, particularly environmental ones [ ]. however, a higher level of education does not always indicate a more “conscious” perception. in fact, experiential or local knowledge (non-formal) can also play a fundamental role in understanding ess, particularly for those services related to multifunctional landscapes (i.e., soil formation, water regulation, forest products, recreational hunting, and food from cattle; [ ]). the residence of the interviewees also influenced the perception of both the impact of toma production on the society of the valleys and of ess provided by mountain farming, especially those related to forest fire prevention. interestingly, in our survey, non-residents showed a greater interest in toma di lanzo and a greater perception of ess, perhaps because their use of the territory is derived from a conscious and targeted choice and is not taken for granted, as it might be for the residents. these considerations enhance the importance of integrating agricultural and tourism supply chains for fostering sustainable development in inner areas. a different perception of ess by residents and non-residents could be justified by the fact that different stakeholders can have different relationships with the same ecosystem [ ]. differences in perceptions of the place of residence have also been noted by other authors [ , ]. for example, reference [ ] highlighted that there are conflicting differences in the perception of some ess between inhabitants of rural and urban areas; people born and raised in rural contexts, where agriculture and livestock play a central role, have a different perception from that of those residing in urban areas, whose point of view is based more on the touristic aspect [ , ]. in order to value these touristic features, especially for non-residents, the coexistence of mountain farming with agritourist activities—i.e., accommodation, restoration, or other recreational activities—in the lanzo valleys is necessary, as already highlighted by [ ]. tourism in inner areas, especially in sustainability , , of the mountains, is a complex phenomenon due to the different tourists’ needs and the specific local features that vary considerably from one destination to another. because of its nature, it does not allow the identification and implementation of standard strategies that are adoptable everywhere [ ]. furthermore, farmhouses tend to adopt more sustainable techniques that have positive impacts on biodiversity and natural resources [ ]. as to the lack of differences recorded for the perception of ess depending on age class and cultural background, this is possibly due to the unbalanced distribution of the sample in the categories of these classes, which, in some cases, presented a low sample size. the positive view of mountain farming and its products coming out from our survey is confirmed by the low perception of the inefficiencies or of the potentially negative impacts that this activity can have on a territory. in fact, for the interviewees, livestock farming does not have a negative impact on the lanzo valleys, in line with the results of other authors [ ]. according to our interviewees, the worst impact of livestock farming is represented by greenhouse gas (ghg) emissions, but it is still perceived as low. although several studies show that the emission of greenhouse gases in extensive farms is greater than in intensive ones [ ], if the lyfe cycle assessment method for the evaluation of the environmental sustainability of mountain farms and their products is applied taking into account their ability to supply ess, mountain production systems are shown to be more sustainable than intensive ones [ , ]. according to the interviewees, the future constraints that could affect mountain animal husbandry and compromise its benefits to the territory and society of the lanzo valleys are mainly the absence of policies/regulations to support livestock in mountain areas and the insufficient income generated by mountain livestock. these aspects indicate problems related to the limited economic sustainability of farms in marginal areas, such as the lanzo valleys, also because the market and public policies have so far not been able to adequately remunerate any non-provisioning services that they can provide [ ]. a possible solution to the issue of economic sustainability may be represented by the integration of livestock production with a more sustainable form of tourism and valorization of local products to achieve profitable synergies, thus avoiding trade-offs [ ]. the innovation goes towards making breeding complementary with tourist services (i.e., farmhouses), ranging from accommodation and restoration to recreation. the organization of festivals and local events focusing on the local cheese might also be useful to attract visitors, and they are, therefore, relevant for the tourism sector, but also for the local economy in general due to the consumption of local gastronomic products, as observed, for example, in a spanish region [ ]. . conclusions our results show that the interviewees appreciate the territory of the lanzo valleys and its typical products. in particular, most of the interviewees had a positive perception of the territory in relation to the landscape and the quality of life, and they showed a high interest in the local product, toma di lanzo. this confirms that mountain products promote the traceability of the output, the preservation of the territory, the environmental quality, the biodiversity, the cultural heritage, and the landscape traits [ ], as well as, as a matter of fact, the ess of the production site and their evolution in the history of mountain agriculture [ ]. this highlights the high potential of toma di lanzo as a key element not only for the development of the territory, but also specifically for the promotion of tourism. in conclusion, the coexistence of touristic activities and pasture-based livestock farming systems, possibly associated with a better promotion of mountain products like toma di lanzo, is desirable to maximize the sustainability of mountain regions [ ]. therefore, exhibitions and events to present toma di lanzo and its production process should be encouraged in order to spread knowledge about them, also in light of our results, which show the importance of education for the perception of ess and consideration of the local product. the adoption of labels and brands, as well as the inclusion of more detailed information in the product label, could also be useful to communicate this sustainability , , of extra value of toma di lanzo to the consumers. this is important especially for non-resident people, who demonstrated a high appreciation of the territory and of its product, and are potentially crucial for touristic development. these strategies may help to highlight ess and product characteristics and, therefore, to increase the income generated by mountain livestock farming, which is seen as one of the major constraints to the future development of these activities. however, other important perceived limitations are the absence of policies/regulations to support livestock in mountain areas and the lack of interest and participation by public bodies in the promotion and enhancement of the territory. to address this issue, farmers’ associations should work to promote awareness among public bodies about these important topics, whose relevance for humankind should be acknowledged. furthermore, a social analysis may allow the identification of the determinants that contribute the most to the development of agritourist activities and that could be used by policymakers as instruments for sustainable rurality [ ]. for future research, it would certainly be advisable to enlarge the sample and to also take into account more diversified dimensions of the respondents (original agricultural, non-agricultural, new farmers, new inhabitants) because these factors can significantly affect the perception of ess and of the local production [ ]. a larger data set would also allow the performance of deeper statistical analyses and, perhaps, for multidimensional differences among the considered factors to be better highlighted, thus permitting a more complete understanding of the complex relationships between mountain farming, the typical cheese derived from this activity, and their perception by the local community in the light of potential tourism development. author contributions: conceptualization, l.b.; methodology, l.b. and m.z.; data collection, r.m.; formal analysis, s.m. and r.m.; data curation, r.m.; writing—original draft preparation, all authors; writing—review and editing, l.b., d.g., and s.m.; supervision, l.b. all authors have read and agreed to the published version of the manuscript. funding: this research received no external funding. acknowledgments: we are extremely grateful to laura chianale, chair of the association of toma di lanzo producers, for introducing us to the lanzo valleys and for her help in spreading the questionnaire. the contribution of manuel giacometto was also important for spreading the news about our survey through the local journal “la voce di ciriè e dintorni”. finally, we would also like to thank enrichetta valfrè for the english revision and all the respondents who dedicated their time to fill out our long questionnaire. conflicts of interest: the authors 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ndt- -a- -year-retrospective-study-of-demographic--anamnestic-and- © di lorenzo et al. this work is published and licensed by dove medical press limited. the full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the creative commons attribution – non commercial (unported, v . ) license (http://creativecommons.org/licenses/by-nc/ . /). by accessing the work you hereby accept the terms. non-commercial uses of the work are permitted without any further permission from dove medical press limited, provided the work is properly attributed. for permission for commercial use of this work, please see paragraphs . and of our terms (https://www.dovepress.com/terms.php). neuropsychiatric disease and treatment : – neuropsychiatric disease and treatment dovepress submit your manuscript | www.dovepress.com dovepress o r i g i n a l r e s e a r c h open access to scientific and medical research open access full text article http://dx.doi.org/ . /ndt.s a -year retrospective study of demographic, anamnestic, and clinical factors related to psychiatric hospitalizations of adolescent patients rosaria di lorenzo nina cimino elena di pietro gabriella pollutri vittoria neviani paola ferri service of psychiatric diagnosis and treatment, department of mental health, ausl modena, modena, school of nursing, university of modena and reggio emilia, school of neuro-psychiatry, school of psychiatry, university of modena and reggio emilia, “the medlar”, villa igea hospital, modena, italy background: psychiatric emergencies of children and adolescents have greatly increased during the last years, but this phenomenon has not been studied in detail. the aim of this study was to analyze the correlation between acute psychiatric hospitalizations of adolescents and selected variables to highlight risk factors for psychiatric emergencies. methods: this retrospective research was conducted in the acute psychiatric public ward, service of psychiatric diagnosis and treatment (spdt), and in the residential facility for adolescents, “the medlar”, located in modena. the sample was constituted by all adolescent patients (n= , age range – ) who had acute hospitalizations (n= ) in spdt and had been successively transferred to “the medlar” (n= ), from february , to january , . from clinical charts, we extracted demographic and anamnestic characteristics of patients and clinical variables related to hospitalizations. data were statistically analyzed. results: sixty-one percent of our patients lived with one divorced parent, with adoptive or immigrant family, or in institutions; % had experienced stressful events during childhood; % had a normal intellective level, but only % presented regular school performance. parental psychiatric illness was negatively related, in a statistically significantly way, with onset age of adolescent mental disorders (coefficient - . , % confidence interval [ci]: - . to . , p, . , single linear regression; odds ratio: . , % ci: . – . , p, . , single logistic regression). the most frequent reasons for admission were aggressive behavior in males and suicide risk in females (p= . ). the most frequent psychiatric diagnosis at spdt discharge was “conduct disorder”, more frequent in males, followed by “adjustment disorder”, more frequent in females (p= . ). in spdt, the adolescent hospitalizations progressively increased fivefold at the end of the observation period. conclusion: our results overlap the worldwide trend of increasing adolescent psychiatric hospitalizations, suggest risk factors like parental psychiatric illness and early life stressful events, and highlight the different prevalence of aggressiveness and suicide in males and females. keywords: psychiatric hospitalizations, adolescent patients, stressful events, mental disorders, suicide risk introduction most authors have highlighted that psychiatric emergencies of children and adolescents are globally widespread and have estimated their exponential increase in the coming decades. – several studies reported the difficulty in collecting specific information on this topic, and therefore, in formulating recommendations for psychiatric hospi- talizations of pediatric patients. – canadian and american studies have highlighted that the prevalence of mental illness among children and adolescents ranges between % and %, estimating an increase of % by . , currently, psychiatric visits correspondence: rosaria di lorenzo mental health department, spdc- modena centro, nocsae, via p. giardini n , baggiovara modena, italy email saradilorenzo @alice.it journal name: neuropsychiatric disease and treatment article designation: original research year: volume: running head verso: di lorenzo et al running head recto: psychiatric hospitalizations of adolescent patients doi: http://dx.doi.org/ . /ndt.s n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / http://www.dovepress.com/permissions.php https://www.dovepress.com/terms.php http://creativecommons.org/licenses/by-nc/ . / https://www.dovepress.com/terms.php www.dovepress.com www.dovepress.com www.dovepress.com http://dx.doi.org/ . /ndt.s mailto:saradilorenzo @alice.it neuropsychiatric disease and treatment : submit your manuscript | www.dovepress.com dovepress dovepress di lorenzo et al for pediatric patients in emergency account for ~ . % of all emergency room pediatric visits in the us and % in canada. in the us, among , admissions per year of patients, aged between six and , psychiatric admissions were recorded. – the number of psychiatric emergency consulta- tions of pediatric patients has significantly increased in europe also, – in particular in italy, where an increase of % in psychiatric visits in emergency room has been recorded from to for the following causes: conduct disorders, substance and alcohol abuse, severe anxiety disorders, and eating disorders. self- or hetero-aggressive behavior is one of the most frequent reasons for psychiatric hospitalization of adolescents, probably because it can be difficult to control in family or community environments. – the aggressive behavior can be related to many different psychiatric disor- ders, such as conduct, psychotic, bipolar, and eating disorders, or can represent an extreme reaction to difficult environmen- tal situations. – among risk factors, maternal drug and alcohol abuse during pregnancy as well as growth disorders during late fetal period and birth injuries is often correlated with early development of aggressive behavior in children. many neuropsychological deficits in executive functions, such as self-regulation, inhibitory control, abstract reasoning, problem-solving, sustained attention-organization, and work planning, have been evidenced as important predictors of violent behavior in childhood. negative family atmosphere, characterized by poor affect and unstable relationships, which induce insecure attachment of children, could be related to the development of aggressiveness. , most studies have reported that domestic violence, parental abandonment, and physical/sexual abuse represent important triggers for aggres- sive behavior in childhood and adolescence. , , in particular, children who suffered from incest, sexual abuse, or physical abuse can be more vulnerable to early psychosis. , , a negative and hostile school environment can contribute to the development of aggressive behavior, especially in those chil- dren who are victims of bullying. also, some socioeconomic factors, which induce social maladjustment, can increase the need for psychiatric emergency consultations. children and adolescents who belong to families of second- and third- generation immigrants can be more vulnerable individuals, frequently requiring acute psychiatric intervention at emergency departments. , in adolescents, the use of alcohol and drugs could be related to both aggressive and suicidal behaviors. , – during adolescence, some mental disorders can become more evident due to this critical phase of transi- tion. as indicated by all guidelines, it is important to diagnose psychiatric disorders at their onset in order to begin treatment as soon as possible, since psychiatric disorders which begin in adolescence rarely have spontaneous remission. a recent review has put in evidence that first onset of mental disorders usually occurs in childhood or adolescence, although treat- ment typically does not occur until a number of years later. another author has more recently confirmed that adult mental health disorders most frequently begin by adolescence. , there are many shared criteria of appropriateness concern- ing psychiatric hospitalizations of adolescents. – one of the best known classifications of adolescent psychiatric emergencies, which has been developed by edelsohn and gomez, divides the appropriateness of admission into four groups: ) potential threat to life and/or to others; ) state of high distress that requires urgent action, without an urgent threat to life; ) serious conditions that require prompt but not immediate intervention; ) “false alarms”. similar to the american academy of child and adolescent psychiatry, the guidelines of the royal college of psychiatrists indicate the need for psychiatric admission in the following situations: acute clinical situation which cannot be managed in outpatient care settings and destructive behavior toward himself or oth- ers. the guidelines for acute psychiatric hospitalization of children from the american psychiatric association indicate the following eleven clinical situations: severe disorders in acute phase; all debut psychiatric disorders; major depressive disorder; suicide attempts; intoxication and/or withdrawal in addiction disorders; untreatable eating disorders with severe risk to life; severe psychosomatic disorders; obsessive– compulsive or phobia disorders which induce disabling conditions; other conditions of chronic disability, like mental retardation or cognitive impairment, with impulsivity and state of agitation; personality disorders with anxiety and maladaptation; and posttraumatic stress disorders. in italy, the childhood and adolescence neuro-psychiatry service (canps) delivers multidisciplinary treatment programs in out- and inpatient care settings for children and adolescents with psychiatric problems. among the italian regions, the allocation of resources for canps is insufficient overall to ensure the dissemination and consolidation of out- and inpatient care services, according to a national report. – from to , in italy, the psychiatric admissions of adolescent patients presented an increase of %, but only a third of children or adolescents were hospitalized in canps facilities. , aim the aim of this study was to analyze the correlation between acute psychiatric hospitalization of adolescents and selected n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : submit your manuscript | www.dovepress.com dovepress dovepress psychiatric hospitalizations of adolescent patients demographic and clinical variables, in order to highlight risk factors for psychiatric emergencies. materials and methods study design this retrospective research was conducted in the acute psychiatric ward service of psychiatric diagnosis and treatment (spdt), located in the general hospital, nuovo ospedale civile sant’agostino estense of modena, and in the residential facility for adolescents, “the medlar”, located in an accredited private hospital (villa igea) in modena. local organization of children and adolescent neuropsychiatric services the canps in modena, which is part of mental health department (az-usl-modena), is composed of a multi- professional team divided into five areas of treatment: neurology, psychiatry, neuropsychology, autism, and mental retardation. since , two beds have been available for patients aged from to in a separate part of the public psychiatric ward spdt of modena, where patients can be hospitalized after consultation in emergency department. the local guidelines indicate that after a brief hospitalization in spdt, patients can be transferred to the psychiatric facility for adolescents in modena, “the medlar”. it is an accredited facility which accommodates eight patients aged from to years, suffering from major emotional disorders and/ or behavioral alterations that cannot be treated in outpatient setting. the multi-professional staff of “the medlar” is directly connected with the referring therapeutics of canps and provides clinical intervention of short individual and family psychotherapy, rehabilitative activities, educational interventions, and drug treatments, tailored to the needs of patients and their families. in particular, the first week’s stay at “the medlar” is dedicated to observation of the patient with “low stimulation” activities. afterwards, patients start structured programs aimed at the recognition of personal issues and disorder awareness, and in the meantime, at the regaining of adequate physical and cognitive performances. many activities with the purposes described earlier are devel- oped: music laboratory, biofeedback, theater performance (acting and set design), group and pet therapy, gardening, art workshop, and mindfulness. at discharge, the patient is sent back home or to a community with the consultation of both his general physician and referring psychiatrist of canps, in order to maintain an uninterrupted treatment. sample it was constituted by all adolescent patients (n= , age range – years) who accounted for acute hospitalizations (n= ) in spdt and were successively transferred to “the medlar” (n= ), from february , to january , . the start of study period was determined by the availability of two beds for adolescent patients (age range – years) in a separate part of the acute psychiatric ward spdt of modena, for voluntary and involuntary admissions. we collected this sample from the ward electronic medical record database. selected variables from clinical charts, we extracted demographic and anam- nestic characteristics of our adolescent patients (table ) and all the available clinical variables related to our sample’s hospitalizations in spdt and in “the medlar” (table ). table the selected demographic and anamnestic variables of our sample demographic sex either male or female age in years (mean ± sd) birth place ) italy; ) europe; ) non-europe family ) biological italian parents; ) divorced parents; ) adoptive parents; ) no family; ) biological immigrant parents education achieved school attendance ) primary school; ) secondary school education performance school performance ) regular/good; ) low; ) school abandonment anamnestic parental disorders ) none; ) psychiatric diseases; ) addictions; ) other diseases early life stressful events ) none; ) parental abandonment, bereavement, and/or social maladjustment; ) economic problems; ) more or other events child abuse ) none; ) physical abuse; ) sexual abuse; ) other intellective level ) normal; ) lower in comparison to the range for age onset age of psychiatric pathology years (mean ± sd) psychiatric treatment period years (mean ± sd) abbreviation: sd, standard deviation. n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : submit your manuscript | www.dovepress.com dovepress dovepress di lorenzo et al the psychiatric diagnoses were in accordance with the international classification of diseases, th revision, clinical modification, italian version of , used in spdt. statistical analysis we calculated absolute frequency and percentages for categorical variables, and mean and standard deviation (sd) for continuous variables. we evaluated the association between each variable and the sex of our adolescent patients by using the chi test for categorical data and student’s t-test for continuous data. in our study, we considered the “age of psychiatric disorder onset” as dependent variable and applied the single and multiple linear regression to correlate it to the demographic, anamnestic, and clinical variables selected. the coefficient of regression and the respective % confidence interval were calculated for each variable category. a p-value , . was considered statistically significant. data were analyzed by using the statistical software stata version . ethical approach the parents or legal guardians of our patients gave us informed consent at the beginning of hospitalizations in both spdt and “the medlar”. this study was conducted in accordance with the principles of the declaration of helsinki (world medical association declaration of helsinki, ) and good clinical practice and was not sponsored by any pharmaceutical com- pany. this study received ethical approval from the institu- tional review board of modena health trust. results our sample of patients was composed of males and females (n= ), with an average age slightly , years ( . ± . sd), which did not differ statistically signifi- cantly between the two sexes (table ). only % of our patients lived in a family composed of both biological italian parents, whereas the remaining cases presented family situations of separated parents ( %), adoptive family ( %), immigrant parents ( %), or orphanages and/ or abandoned ( %), with a statistically significant differ- ence between males and females (table ). the majority of our sample did not report any parental disorder, which, if occurred, was mostly represented by psychiatric ill- ness ( %) (table ). fifty-one percent of our patients had experienced abandonment, economic failure, social maladjustment, and other stressful events, whereas only a minority of them ( . %) had suffered from physical and/ or sexual abuse (table ). the majority ( %) of our patients presented normal intellective level according to range for age (table ). concerning school attendance and performance, we have found a statistically significant difference between males, table the selected clinical variables of our sample’s hospitalizations in spdt and “the medlar” clinical variables reason for hospitalization ) aggressive behavior; ) risk of suicide; ) acute psychotic decompensation; ) substance abuse; ) depressive state; ) psychosocial emergency; ) running away; ) other hospitalization modality ) voluntary treatment; ) involuntary treatment admission modality ) after er consultant; ) transfer from “the medlar” or from another ward; ) after canps consultant aggressive behavior ) none; ) present; ) severe with need for physical restraint and/or hospital security duration of hospitalization days (mean ± sd) psychiatric diagnosis at spdt discharge (icd- -cm) ) psychiatric disorders related to substance abuse; ) schizophrenia disorders and other psychoses; ) bipolar disorders; ) anxiety disorders and dysthymia; ) personality disorders; ) substance abuse; ) eating disorders; ) adjustment disorders; ) conduct disorders; ) neurodevelopmental disorders and mental retardation organic comorbidity ) none; ) present substance abuse in comorbidity ) none; ) alcohol; ) stimulants (cocaine); ) cannabinoids; ) opioids; ) cannabinoids and other substances pharmacological therapy at discharge ) none; ) mono-therapy; ) poly-therapy ) typical antipsychotics; ) atypical antipsychotics; ) antidepressants; ) mood stabilizers; ) benzodiazepines therapeutic compliance ) none; ) present; ) discontinuous psychotherapy ) none; ) individual; ) family therapy rehabilitive programs ) none; ) to general functioning; ) to specific performances destination at discharge ) home with canps care; ) day hospital of canps; ) community/protected facility; ) transfer to another psychiatric ward or facility; ) other abbreviations: spdt, service of psychiatric diagnosis and treatment; er, emergency room; canps, childhood and adolescence neuro-psychiatry service; sd, standard deviation; icd- -cm, international classification of diseases, th revision, clinical modification, italian version of . n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : submit your manuscript | www.dovepress.com dovepress dovepress psychiatric hospitalizations of adolescent patients who presented poorer school performance, and females, who more often interrupted their schooling (table ). the onset age of psychiatric disorders was just . years (on average . ± . sd), and the period of psychiatric treat- ment by canps was ~ years on average (table ). among the demographic variables and medical history of our patients, parental psychiatric illness was the only variable that presented a negative statistically significant correlation with the age of mental disorder onset in both the regression models (table ). our patients had admissions to the spdt of nuovo ospedale civile sant’agostino estense during the observation period ( . hospitalization per patient on aver- age). the most frequent reason for admission to spdt was represented by aggressive behavior, followed by suicide risk, acute psychotic decompensation, substance abuse, depres- sive state, psychosocial emergencies, and running away from home (figure ). the reasons for hospitalizations statistically significantly differed between males and females: early table the demographic and anamnestic variables of our patients (n= ) variables males females total statistical test n= ( %) n= ( %) n= ( %) age, mean ± sd years . ± . . ± . . ± . not stastically significant birth place, n (%) ) italy ( ) ( ) ( ) not stastically significant ) europe ( ) ( ) ( ) ) non-europe ( ) ( ) ( ) family, n (%) ) biological italian parents ( ) ( ) ( ) pearson chi = . , p= . ) divorced parents ( ) ( ) ( ) ) adoptive parents ( ) ( ) ( ) ) no family ( ) ( ) ( ) ) biological immigrant parents ( ) ( ) ( ) school attendance, n (%)* ) primary school ( ) ( ) ( ) not stastically significant ) secondary school ( ) ( ) ( ) school attendance, n (%)* ) regular/good ( ) ( ) ( ) pearson chi = . , p= . ) low ( ) ( ) ( ) ) school abandonment ( ) ( ) ( ) parental disorders, n (%)* ) none ( ) ( ) ( ) not stastically significant ) psychiatric diseases ( ) ( ) ( ) ) addictions ( ) ( ) ( ) ) other diseases ( ) ( ) ( ) early life stressful events, n (%) ) none ( ) ( ) ( ) not stastically significant ) parental abandonment, bereavement, and/or social maladjustment ( ) ( ) ( ) ) economic problems ( ) ( ) ( ) ) more or other events ( ) ( ) ( ) child abuse, n (%)* ) none ( ) ( ) ( . ) not stastically significant ) physical abuse ( ) ( ) ( . ) ) sexual abuse ( ) ( ) ( . ) ) others ( ) ( ) ( ) intellective level, n (%)** ) normal ( ) ( ) ( ) not stastically significant ) lower in comparison to the range for age ( ) ( ) ( ) onset age of psychiatric pathology, mean ± sd* years . ± . . ± . . ± . not stastically significant period of psychiatric treatment, mean ± sd* years . ± . . ± . . ± . not stastically significant notes: *data available for patients. **data available for patients. abbreviation: sd, standard deviation. n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : submit your manuscript | www.dovepress.com dovepress dovepress di lorenzo et al aggressive behavior was the most frequent cause for males, whereas suicide risk constituted the most frequent motivation for females (pearson chi = . , p= . ; table and figure ). the majority of patients ( . %) were admitted to the spdt after emergency department consultation and were voluntarily hospitalized ( . %), whereas . % did not present a good therapeutic compliance (table ). during the observation period, the number of hospitalizations in spdt progressively increased up to fivefold at the end of the observation period, with a transfer rate to “the medlar” of . % during the last year (figure ). the most frequent psychiatric diagnosis at discharge from the spdt was represented by “conduct disorder”, followed by “adjust- ment disorder” (table and figure ), with a statistically significant difference between males, who most frequently suffered from “conduct disorder”, and females, who more often presented “adjustment disorder” (pearson chi = . , p= . ; table and figure ). the addiction disorders were more frequent in males ( . %) than females ( . %), and the most frequent substance of abuse was cannabinoids, also associated with other substances ( % of our sample) (table ). our sample had a low frequency of organic comorbidity ( . %), with no statistically significant dif- ferences by sex (table ). we have found that of the hospitalizations in spdt were transferred to “the medlar” during the observa- tion period. the clinical variables related to stays at “the medlar” differed from those of spdt hospitalizations for many features as provided by local guidelines: more prolonged period of hospitalization, more rehabilitation activities for all patients, lower level of aggressiveness, different pharmacological therapies, and destinations at discharge (table ). from “the medlar”, patients more frequently were sent home, with the support of the day hospital of canps and regular visits by referring specialists of canps, whereas, from spdt, patients more frequently were transferred to “another ward or facility”, in particular to “the medlar” (table ). both in spdt and “the medlar”, mild and severe aggressive behavior was recorded with higher frequency in spdt compared to that recorded in the facility (table ). at discharge, only a minority of patients were not prescribed a drug therapy, whereas in most cases, poly-pharmacy was administered (table ). discussion our study has revealed that the use of psychiatric hospital- ization for adolescents has gradually but greatly increased since the availability of hospital beds in the acute psychiatric ward (spdt) and in the protected facility (“the medlar”). this result, although limited to a single town area, is in line with literature data which highlight the increase of psychi- atric treatments in adolescents. , in this regard, we have to emphasize that the availability of hospital beds dedicated to adolescents could have in itself increased the demand for hospitalization, indirectly shaping the treatment modality. therefore, we cannot affirm whether the observed increase of adolescent psychiatric treatments represents an epidemio- logic trend of adolescent psychiatric disorders or rather an table the correlation between the onset age of psychiatric disorder and parental disorders in our sample (n= ) variables* coefficient standard error probability % confidence interval single linear regression parental disorders vs none - . . p, . - . to . multiple linear regression parental disorders* vs none - . . p= . . – . odds ratio single logistic regression parental disorders vs none . . . . – . multiple logistic regression parental disorders vs none . . . . – . note: *only statistically significant variables. figure reasons for hospitalizations in spdt, divided by sex. abbreviation: spdt, service of psychiatric diagnosis and treatment. n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : submit your manuscript | www.dovepress.com dovepress dovepress psychiatric hospitalizations of adolescent patients enhanced opportunity for treating adolescent patients with psychiatric problems. our sample, although limited in number, was homo- geneous for sex and age distribution and representative of our social environment. among the demographics and medical histories, parental psychiatric illness was the only variable negatively related, in a statistically significant way, to the onset age of childhood mental disorders. this result shows that a family context with mental disorder can lead to an increased vulnerability for psychiatric illness in children and adolescents, which tends to occur earlier, suggesting strong parent conditioning on the development of childhood mental disorders. in any case, our data, which overlap most studies, cannot specify if this correlation is based on genetic or environmental factors or both. regarding family context, only % of our patients lived with both biological italian parents, whereas the others lived with only one divorced parent, adoptive family, or immigrant family, or in institutions because they were abandoned or orphans. these data are in line with all the literature results, which highlight that early family changes, such as divorces or immigration, are potential risk factors for the development of a mental disorder in children. , about half of our patients reported in their histories stressful early life events, such as abandonment, economic difficulties, social exclusion, and physical and/or sexual abuse, although with lower percentages than other reports in the literature. nevertheless, the high-impact emotional situ- ations, as we reported, could represent such traumatic stress events as to condition the development of mental disorders, as observed by other authors. , despite their disadvantageous conditions, the adherence of our patients to treatments, as our high rate of voluntary treatments highlighted, was appar- ently good in comparison to another report. the majority of our patients had a normal intellective level, but, despite this, only % presented regular school performance. in most cases, school attendance was discontinuous or insufficient. in particular, with a statistically significant difference table the clinical variables of our sample’s hospitalizations in spdt (n= ) variables males females total statistical test n= ( %) n= ( %) n= ( %) reason for hospitalization, n (%) ) aggressive behavior ( ) ( . ) ( . ) pearson chi = . , p= . ) risk of suicide ( ) ( . ) ( . ) ) acute psychotic decompensation ( ) ( . ) ( . ) ) substance abuse ( . ) ( . ) ( ) ) depressive state ( ) ( . ) ( . ) ) psychosocial emergency ( . ) ( . ) ( . ) ) running away ( . ) ( . ) ( . ) ) other ( . ) ( ) ( . ) therapeutic compliance at admission, n (%) ) absent ( . ) ( . ) ( . ) not stastically significant ) present ( . ) ( . ) ( . ) ) discontinuous ( . ) ( . ) ( ) modality of hospitalization, n (%) ) voluntary treatment ( . ) ( . ) ( . ) not stastically significant ) involuntary treatment ( . ) ( . ) ( . ) modality of admission, n (%) ) after er consultant ( ) ( . ) ( ) not stastically significant ) transfer from “the medlar” or from another ward ( ) ( . ) ( ) ) after canps consultant ( ) ( . ) ( ) abbreviations: spdt, service of psychiatric diagnosis and treatment; er, emergency room; canps, childhood and adolescence neuro-psychiatry service. figure destination at discharge of spdt hospitalizations, by years of the observation period. abbreviation: spdt, service of psychiatric diagnosis and treatment. n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : submit your manuscript | www.dovepress.com dovepress dovepress di lorenzo et al table psychiatric diagnosis, substance abuse, and organic comorbidity at discharge of spdt (n= ) variables sample statistical test males females total n= ( %) n= ( %) n= ( %) psychiatric diagnosis at discharge (icd- -cm), n (%) ) psychiatric disorders related to substance abuse ( – . ; – . ) ( . ) ( . ) ( . ) pearson chi = . , p= . ) schizophrenia disorders and other psychoses ( – . ; – . ) ( . ) ( . ) ( . ) ) bipolar disorders ( – . ) ( . ) ( . ) ( . ) ) anxiety disorders and dysthymia ( – . ) ( . ) ( . ) ( . ) ) personality disorders ( – . ) ( . ) ( . ) ( . ) ) eating disorders ( . – . ) ( . ) ( . ) ( . ) ) adjustment disorders ( – . ) ( . ) ( . ) ( . ) ) conduct disorders ( – . ) ( . ) ( . ) ( . ) ) neurodevelopmental disorders and mental retardation ( – . ; – ) ( . ) ( . ) ( . ) substance abuse in comorbidity, n (%) ) absent ( . ) ( . ) ( . ) not stastically significant ) alcohol ( . ) ( ) ( . ) ) stimulants (cocaine) ( . ) ( ) ( . ) ) cannabinoids ( . ) ( . ) ( . ) ) opioids ( . ) ( ) ( . ) ) other and/or more substances ( . ) ( . ) ( . ) organic comorbidity, n (%) ) absent ( . ) ( . ) ( . ) not stastically significant ) present ( . ) ( . ) ( . ) abbreviations: icd- -cm, international classification of diseases, th revision, clinical modification, italian version of ; spdt, service of psychiatric diagnosis and treatment. figure psychiatric diagnosis at discharge from spdt (icd- -cm), divided by sex. abbreviations: spdt, service of psychiatric diagnosis and treatment; icd- -cm, international classification of diseases, th revision, clinical modification, italian version of . between sexes, males presented the worst school perfor- mance, whereas females more often interrupted school atten- dance. our data suggest that a severe psychiatric condition, such as those suffered by our patients, could have a significant negative impact on school performance, regardless of cogni- tive level. moreover, we have to underline that disadvantaged social conditions or stressful family context, such as those highlighted in our sample, could be unfavorable conditions for school attendance. the main cause of spdt hospitalization was represented by aggressive behavior, mainly for males, followed by the risk of suicide, more frequent in females. this result overlaps the sex difference reported by most studies which highlighted higher rates of suicide attempts in adolescent females. , – , n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : submit your manuscript | www.dovepress.com dovepress dovepress psychiatric hospitalizations of adolescent patients table the clinical variables of hospitalizations in spdt and “the medlar” variables spdt the medlar statistical test n= n= duration of hospitalization, mean ± sd days . ± . . ± . t=- . , student’s t-test; p= . aggressive behavior, n (%) ) absent ( ) ( ) pearson chi = . , p= . ) present ( ) ( ) ) severe with need for physical restraint and/or hospital security ( ) ( ) pharmacological therapy at discharge, n (%) ) none ( ) ( ) pearson chi = . , p= . ) mono-therapy ( ) ( ) ) poly-therapy ( ) ( ) destination at discharge, n (%) ) home with canps care ( ) ( ) pearson chi = . , p= . ) day hospital of canps ( ) ( ) ) community/protected facility ( ) ( ) ) transfer to psychiatric ward or facility ( ) ( ) psychiatric drugs prescribed at discharge, n (%) ) typical antipsychotics ( ) ( ) pearson chi = . , p= . ) antidepressants ( ) ( ) ) mood stabilizers ( ) ( ) ) benzodiazepines ( ) ( ) psychotherapy, n (%) ) individual ( ) ( ) not stastically significant ) familial ( ) ( ) rehabilitative programs, n (%) ) no rehabilitation programs ( ) ( ) pearson chi = . , p= . ) to general functioning ( ) ( ) ) to specific performances ( ) ( ) abbreviations: spdt, service of psychiatric diagnosis and treatment; sd, standard deviation; canps, childhood and adolescence neuro-psychiatry service. regarding the sex difference, we observed that the diagnosis of conduct disorder with aggressive and impulsive behavior was prevalent in males, whereas in females, maladjustment reaction with depressive mood and anxiety disorders was the most frequent diagnosis at discharge. our results indirectly are in line with other studies which highlight a correlation between male sex and aggressiveness due to testosterone hormonal profile, although this relationship might represent an “oversimplification” of a complex human behavior, such as aggressiveness. , although substance abuse was prevalent in males, representing for them a frequent reason for hospitalization, we have not observed any statistically significant sex difference. in males and females, cannabinoids use, single or in combina- tion with other substances, was the most common abuse. in both spdt and “the medlar”, we recorded mild and severe aggressive behavior of patients admitted, without any sex difference, with a rate almost double in spdt in comparison to the residential facility. the difference between the two structures could be related to the acute phase of the patients admitted to the spdt, successively transferred in subacute phase to “the medlar” for continuation of care. in line with the local guidelines, all patients in the sample had brief hospitalizations in spdt, which were continued in more than half of the cases in “the medlar”. in this facility, they were hospitalized longer with more structured psychotherapeutic and rehabilitative programs extended to all patients admitted. conclusion the psychiatric hospitalization of adolescents is an increasing worldwide phenomenon, described only in few studies and still little studied, especially in italy, where the literature on this topic is very poor. our study, which puts in evidence similar trend in psychiatric hospitalizations of adolescents, contributes to analyze this issue. the main limits of this study consist of its retrospective design, limited to only one local health area, with a sample not sufficiently large to permit definitive and generalized conclusions. the analysis of our anamnestic data revealed some impor- tant elements, such as the negative statistically significant correlation between parental psychiatric illness and onset age n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com neuropsychiatric disease and treatment : submit your manuscript | www.dovepress.com dovepress dovepress di lorenzo et al of mental disorders, as well as the high frequency of stressful early life events in the history of our patients. concerning the sex difference, we evidenced that the aggressive behavior in males, mainly suffered from conduct disorders, and suicide attempt in females, were the most frequent reasons for hospitalization, confirming the clinical observation of different sex vulnerability. more studies are needed to explore the relationship between the risk factors and the onset of psychiatric illness in children. more attention is necessary to correctly imple- ment health programs for acute situations in order to permit early treatments for young patients, ensuring that 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. italian. . stata corp lp. stata statistical software: release . college station, tx: stata corp lp; . . spidel a, lecomte t, greaves c, sahlstrom k, yuille jc. early psychosis and aggression: predictors and prevalence of violent behaviour amongst individuals with early onset psychosis. int j law psychiatry. ; ( ): – . . rhodes ae, bethell j, carlise c, rosychuk rj, lu h, newton a. time trends in suicide-related behaviours in girls and boys. can j psychiatry. ; ( ): – . . carré jm, olmstead na. social neuroendocrinology of human aggres- sion: examining the role of competition-induced testosterone dynamics. neuroscience. ; : – . . reimers l, diekhof ek. testosterone is associated with cooperation during intergroup competition by enhancing parochial altruism. front neurosci. ; : . n e u ro p sy ch ia tr ic d is e a se a n d t re a tm e n t d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / http://www.dovepress.com/neuropsychiatric-disease-and-treatment-journal http://www.dovepress.com/testimonials.php www.dovepress.com www.dovepress.com www.dovepress.com www.dovepress.com https://www.aacap.org/aacap/policy_statements/ /inpatient_hospital_treatment_of_children_and_adolescents.aspx https://www.aacap.org/aacap/policy_statements/ /inpatient_hospital_treatment_of_children_and_adolescents.aspx http://www.rcpsych.ac.uk/files/pdfversion/cr .pdf http://www.rcpsych.ac.uk/files/pdfversion/cr .pdf http://www.fondazionechild.it/layout/upload/florence_declaration.pdf http://www.fondazionechild.it/layout/upload/florence_declaration.pdf http://normativasan.servizirl.it/port/getnormativafile?filename= _ricoveri extracontratto psichiatria e npia .doc http://normativasan.servizirl.it/port/getnormativafile?filename= _ricoveri extracontratto psichiatria e npia .doc http://normativasan.servizirl.it/port/getnormativafile?filename= _ricoveri extracontratto psichiatria e npia .doc http://www.sinpia.eu/regionali/sezione/cat/ /page/documenti http://www.sinpia.eu/regionali/sezione/cat/ /page/documenti https://www.ars.toscana.it/files/pubblicazioni/volumi/ / _salute_mentale.pdf https://www.ars.toscana.it/files/pubblicazioni/volumi/ / _salute_mentale.pdf http://http://www.istat.it/it/archivio/ / http://http://www.istat.it/it/archivio/ / http://gruppocrc.net/img/pdf/viiirapportocrc.pdf http://gruppocrc.net/img/pdf/viiirapportocrc.pdf 	publication info : 	nimber of times reviewed : welcome to professional development resources 	 	 	 	success: 	warning: 	 	 welcome back, guest 	 	 	sign in • register online continuing education for healthcare professionals 	ce info 		courses 			 psychology cecounseling cespeech-language pathology ceussocial work ceoccupational therapy ceusmarriage & family therapy cenutrition & dietetics ceschool psychology ceteaching ce 		 		 how tocontact 	 	 	sign in 			 	  *titles descriptions author last name course number 	 	 	 	 	 		 	 new online ce course! 	 sign up to receive a welcome coupon, free course offers, new course announcements, and more!   	 welcome! choose your profession to view courses: 	 	 	 select profession psychology ce counseling ce speech-language pathology ceus social work ce occupational therapy ceus marriage & family therapy ce nutrition & dietetics ce school psychology ce teaching ce all professions 				 	    earn ce wherever you love to be! click here to learn more. 	 	we are accredited by: 	       professional development resources is approved by the american psychological association (apa) to sponsor continuing education for psychologists. professional development resources maintains responsibility for all programs and content. professional development resources is also approved by the national board of certified counselors (nbcc); 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È pleonastico ricordare che si tratta di attività sanitarie il cui scopo prevalente è quello di tutelare la salute animale e umana e di promuovere la produttività e il benessere delle popolazioni animali. ma vale la pena ribadire che tali attività hanno un ruolo assai rilevante anche sotto il profilo economico e sociale. questo corposo volume fa il punto sulle com- petenze che le diverse componenti professionali devono possedere. un volume importante per comprendere la realtà veterinaria italiana, pubblica e privata, nato dal lavoro congiunto di figure di primo livello della medicina veterinaria del paese: i curatori sono tutti docenti del dipartimento di scienze mediche veterinarie dell’università di bologna, convinti assertori del ruolo sociale della medicina veterinaria, del concetto di medicina/salute unica e della necessità di migliorare l’aspetto formativo. i professori battelli, baldelli, ostanello e prosperi fanno parte di quella che viene defini- ta la “scuola bolognese di sanità pubblica veterinaria” il cui fondatore è stato adriano mantovani (scomparso a marzo dello scorso anno), unanimemente considerato il padre della spv italiana e di cui vengono qui pubblicati scritti e una breve scheda biografica che lo ricorda. il volume è suddiviso in tre parti allo scopo di fornire al lettore un percorso interpretativo logico che si sviluppa verso la comprensione delle competenze e dei campi di attività dei servizi veterinari nel nostro paese, fino a mettere in luce le sfide attuali e future che la spv deve affrontare. particolare attenzione viene posta nei confronti dell’evoluzione che tali attività sanitarie potranno avere nel prossimo futuro, in riferimento ai cambiamenti socio-economici, alle attività di produzione e com- mercializzazione di alimenti di origine animale, alle emergenze di tipo sanitario, alle nuove istanze dei consumatori e degli amministratori pubblici. la prima parte “la storia e i concetti” si sofferma in particolare sull’evoluzione della spv in italia, sulle zoonosi, sul rapporto uomo-animale anche in ambito urbano con l’ultimo contributo relativo all’igiene urbana veterinaria. la seconda parte “le attività” passa in rassegna i servizi veterinari pubblici del paese, i nas, gli enti scientifici (tra cui iizzss e iss) fino a trattare attività quali la sicurezza alimentare, le emergenze non epidemiche, il benessere animale e la pet therapy. nella terza e ultima parte “le sfide” ci si interroga sul ruolo sociale della medicina veterinaria, sul concetto di medicina unica, sull’etica nella sperimentazione animale, sulla formazione, l’educazione e la comunicazione. (bononia university press, pp. , € , ) www.buponline.com (a cura di) giorgio battelli, raffaella baldelli, fabio ostanello, santino prosperi gli animali, l'uomo e l'ambiente senior citizen housing implementing a continuum of care environment by dana s. marek .m.sc, the t e c h n i c a l u n i v e r s i t y of warsaw, a thesis submitted in partial fulfillment of the requirements for the degree of master of advanced studies in architecture the faculty of (school of i n graduate studies a r c h i t e c t u r e ) we accept t h i s t h e s i s as conforming to the r e q u i r e d standard the university of british columbia september © dana susanne marek, in presenting this thesis in partial fulfilment of the requirements for an advanced degree at the university of british c o l u m b i a , i agree that the library shall make it freely available for reference and study. i further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. it is u n d e r s t o o d that c o p y i n g or publication of this thesis for financial gain shall not be allowed without my written permission. department of s c h o o l o f a r c h i t e c t u r e the university of british c o l u m b i a vancouver, canada date o c t o b e r , de- ( / ) i i a b s t r a c t in the l a s t twenty f i v e years the h e a l t h of i n d i v i d u a l s worldwide has changed. l i f e expectancy has s u b s t a n t i a l l y i n c r e a s e d and the p r o p o r t i o n of o l d e r c i t i z e n s i s growing c o n s t a n t l y . t h i s growing p o p u l a t i o n of e l d e r l y people w i l l dominate the housing market i n the coming y e a r s . an i n c r e a s e d demand f o r housing and h e a l t h care s e r v i c e s f o r the e l d e r l y c a l l s not o n l y f o r much g r e a t e r supply than we have ever experienced, but a l s o f o r new approaches, one of which i s based on the g r a d u a t i o n of care. p r o v i n c i a l and l o c a l governments are l o o k i n g f o r innova- t i v e o p t i o n s and design s o l u t i o n s which c o u l d meet the needs and e x p e c t a t i o n s of a new wave of s e n i o r s a t the end of t h i s century. i t i s the i n t e n t i o n of t h i s t h e s i s to i d e n t i f y and d e f i n e what are the u n d e r l y i n g p r i n c i p l e s i n p l a n n i n g housing and s e r v i c e s f o r the contemporary e l d e r l y . the t h e s i s has been developed as a r e s e a r c h c y c l e based on a three-phase methodology of a n a l y s i s - s y n t h e s i s - e v a l u a t i o n . a n a l y s i s commences with comprehensive r e s e a r c h i n t o e x i s t i n g f a c i l i t i e s and i n t r o d u c e s the n o t i o n of m u l t i - l e v e l care of the e l d e r l y . i t i n v e s t i g a t e s the r e a l meaning of the q u a l i t y environment w i t h i n the e l d e r l y f a c i l i t y i n terms of a c o n t i n u - um of h i s / h e r l i f e s t y l e . s y n t h e s i s d e f i n e s the phenomenon of the continuum of care environment i n the f u l l s c a l e f a c i l i t y program f o r the proposed continuum of care complex (ccc) i n west p o i n t grey i n vancouver, b.c. e v a l u a t i o n i n v e s t i g a t e s i i i the f e a s i b i l i t y of the program implementation on a t e s t s i t e . a b a s i c premise of the t h e s i s i s t h a t a m u l t i - l e v e l care f a c i l i t y i s a v i a b l e way of a c h i e v i n g an environment, which may f u l f i l l a comprehensive a r r a y of needs of the e l d e r l y . i t should i n c l u d e housing a l t e r n a t i v e s f o r the e l d e r l y , both i n terms of tenure and s u p p o r t i v e s e r v i c e s , but above a l l should provide a s p e c i f i c ambiance equal to a home-like environment. the t h e s i s has been s t r u c t u r e d as a h y p o t h e t i c a l model of a programming system based on the p r i n c i p l e of the continuum of care. t h i s model i n c l u d e s f o u r major f u n c t i o n a l components of the proposed complex: r e s i d e n t i a l , long-term care, community s e r v i c e s and outdoor a c t i v i t y spaces t h a t b l e n d i n g t o g e t h e r c r e a t e a q u a l i t y environment. t h i s model has been developed i n the r e a l s i t u a t i o n of the p o i n t grey community on the p r i n c i p l e of an a c t i v e i n t e r a c t i o n . subsequently t h i s model has been t e s t e d on a s e l e c t e d s i t e i n terms of i d e n t i f i c a t i o n of o p p o r t u n i t i e s and c o n s t r a i n t s which may a f f e c t s u c c e s s f u l program implementation. the t h e s i s concludes t h a t a h y p o t h e t i c a l model of the continuum of care complex can be s u c c e s s f u l l y implemented on the s e l e c t e d t e s t s i t e of the p o i n t grey community. "continu- um of care" environment f o r the e l d e r l y developed i n the model may s a t i s f y a broad range of needs f o r the e l d e r l y : p h y s i c a l , p h y s i o l o g i c a l and s o c i o p s y c h o l o g i c a l . i v table of contents a b s t r a c t i i - i i i table of contents i v - x i i l i s t of f i g u r e s x i i i - xv l i s t of tables x v i - x v i i acknowledgements x v i i i i n t r o d u c t i o n - . the o r i g i n of my t h e s i s . problem statement: b r i t i s h columbia background - . d e f i n i t i o n of continuum of care - . i n t e n t i o n s of the t h e s i s - . research questions - . o b j e c t i v e s of the t h e s i s - . methodology - . layout of the t h e s i s - chapter - the continuum of care concept - chapter summary . l i t e r a t u r e and p r o j e c t s review: concepts of m u l t i - l e v e l e l d e r l y housing. - . . greater vancouver regional d i s t r i c t area and b r i t i s h columbia. - . . canada - v . . europe - . . the united s t a t e s of america - . . c o n c l u s i o n . review of the c u r r e n t p o l i c i e s of the e l d e r l y housing - . . f i n d i n g s , problem statement and summary - . . the ccc i n p o i n t grey as one of the options and innovative approaches to s o l v i n g the e l d e r l y housing problem. - . r a t i o n a l e of the t h e s i s chapter - supply and demand: a n a l y s i s of the e l d e r l y housing options and s e r v i c e s i n vancouver and west p o i n t grey area. - chapter summary . . the contemporary e l d e r l y : t h e i r means and e x p e c t a t i o n s - . . current trends - . . features c h a r a c t e r i s t i c s of s e n i o r c i t i z e n s - the future c l i e n t s of the continuum of care complex (c.c.c.) - . the e l d e r l y i n vancouver - . . e l d e r l y p o p u l a t i o n : the people and t h e i r houses - . . reluctance to move versus a t t r a c t i v n e s s of a new place - . . c i t y ' s housing p o l i c i e s and market forces . the e l d e r l y i n p o i n t grey - . . vancouver west s i t e : trends and p r e f e r e n c e s - . . the e x i s t i n g s e n i o r housing i n p o i n t grey - . . the e x i s t i n g long term care f a c i l i t i e s . . a need f o r long term care f a c i l i t i e s - . . a need f o r s e n i o r centre . . p o i n t grey: d e s t i n a t i o n f o r the e l d e r l y - . the s i t e of the continuum of care complex a t th ave & highbury s t r e e t . chapter - the ccc f a c i l i t y o b j e c t i v e s chapter summary i n t r o d u c t i o n - . l i v i n g environment o b j e c t i v e s (l.e.o.) - l.e.o. # - q u a l i t y environment - # - s a f e t y and s e c u r i t y - # - v a r i e t y of environments - . r e s i d e n t s ' o b j e c t i v e s (r.o.) - r.o. # - r e s i d e n t i a l tenure choice - # - h e a l t h care needs - # - s o c i a l needs - . f a c i l i t y management o b j e c t i v e s (f.m.o.) - f.m.o. # - autonomy and u s e f u l n e s s of residents - # - independence v i i # - p e r s o n a l i z a t i o n and c o n t r o l # - f r i e n d l y p h y s i c a l environment - # - c e n t r a l i z a t i o n of supportive s e r v i c e s - . community o b j e c t i v e s (co.) - c o . # - care f o r the l o c a l e l d e r l y . - # - access to neighbourhood resources. - # - l i f e s u s t a i n i n g resources # - community network - # - l i f e e n r i c h i n g resources - * - business i n t e g r a t i o n neighbourhood development o b j e c t i v e s (n.d.o.) - n.d.o.#l - c h a r a c t e r and l i v a b i l i t y - # - c o m p a t i b i l i t y # - s t r e e t s c a p e - # - views - # - minimize noise impact # - p r i v a c y - # - secure environment # - v a r i e t y of open spaces - # - landscaping . c o n c l u s i o n - chapter - the ccc f a c i l i t y components - chapter summary i n t r o d u c t i o n - v i i i . s i z e of the f a c i l i t y - . housing - independent l i v i n g - . . bchmc housing - n o n - p r o f i t rental housing - . . co-operative housing - . . s t r a t a - t i t l e housing (condominiums) - . . s e r v i c e s i n the independent l i v i n g housing - . housing f o r persons r e q u i r i n g long term care - . . intermediate care f a c i l i t y - . . extended care f a c i l i t y - . . the number of long term care beds - . the core centre . . core centre component i - l i f e e n r i c h i n g resources - c u l t u r a l centre - . . core centre component i i - l i f e s u s t a i n i n g resources - h e a l t h centre - . . core centre component i i i - s o c i a l i n t e r a c t i o n and business i n t e g r a t i o n . . . core centre component iv - supporting and maintenance components. . outdoor spaces - . . outdoor space components - . c o n c l u s i o n - chapter - general program requirements - chapter summary i x . r e s i d e n t i a l housing - independent l i v i n g c l u s t e r . . f u n c t i o n a l components - . . housing p a t t e r n and c r i t i c a l issues - . . . shape (layout) of the c l u s t e r - . . . c l u s t e r i d e n t i t y - . . . r e l a t i o n s h i p with the core centre . . d w e l l i n g u n i t s - . . . f u n c t i o n a l components . . . category of users and t h e i r needs . . p r i v a t e outdoor space - independent l i v i n g housing - . . . i n t r o d u c t i o n - . . . elements of p r i v a t e space - . . . issues i n designing p r i v a t e outdoor spaces - . dependent l i v i n g - intermediate care f a c i l i t y - . . f u n c t i o n a l components - . . l i v i n g u n i t s - p a t t e r n and c r i t i c a l issues - issue # - sense of r e s i d e n c y - issue # - f l e x i b i l i t y issue # - l i n k with the core centre - wayfinding w i t h i n the ccc f a c i l i t y - . dependent l i v i n g - extended care f a c i l i t y - . . f u n c t i o n a l components . . l i v i n g u n i t s p a t t e r n and c r i t i c a l issues - issue # - c l u s t e r approach - issue # - r e s i d e n t i a l character - issue # - home l i k e environment - issue # - p a t i e n t l i v i n g u n i t - p r i v a c y issue - . . p r i v a t e outdoor spaces i n the dependent l i v i n g - long term care f a c i l i t y - . core centre - . . main concourse - . . food f a i r - d i n i n g - . . food s e r v i c e s f a c i l i t y - . . r e h a b i l i t a t i o n centre - . . a r t s and c r a f t s - . . auditorium and s p e c i a l programs - . . a d m i n i s t r a t i o n - . . c l i n i c - . . pharmacy - . . l i b r a r y - . . s t a f f support f a c i l i t i e s - . . laundry s e r v i c e s - . . p l a n t s e r v i c e s - . . b u i l d i n g s e r v i c e s - . . m a t e r i a l s e r v i c e s - . f a c i l i t y common outdoor space - . parking and road network w i t h i n f a c i l i t y chapter - f e a s i b i l i t y of program implementation on the s e l e c t e d s i t e : t h e s i s c o n c l u s i o n . _ chapter summary e v a l u a t i o n i # : s i t e l o c a t i o n and s i z e - . . r a t i o n a l e - . . l o c a t i o n - . . o p p o r t u n i t i e s . . c o n s t r a i n t s . . c o n c l u s i o n e v a l u a t i o n i # : land use context - . . o p p o r t u n i t i e s . . c o n s t r a i n t s - . . c o n c l u s i o n e v a l u a t i o n # : p u b l i c t r a n s p o r t a t i o n , v e h i c u l a r and p e d e s t r i a n access. - . . o p p o r t u n i t i e s - . . c o n s t r a i n t s - . . c o n c l u s i o n - e v a l u a t i o n # : s i t e p h y s i c a l c h a r a c t e r i s t i c - . . o p p o r t u n i t i e s : s i t e n a t u r a l resources - . . c o n s t r a i n t s . . c o n c l u s i o n - e v a l u a t i o n # : space c h a r a c t e r and views - . . o p p o r t u n i t i e s - x i i . . c o n s t r a i n t s . . c o n c l u s i o n - e v a l u a t i o n # : housing p a t t e r n s . . r a t i o n a l e . . p a t t e r n no.l - . . p a t t e r n no. . . p a t t e r n no. . . p a t t e r n no. . . c o n c l u s i o n - f i n d i n g s and t h e s i s c o n c l u s i o n - references - appendices - list of figures f i g . - h o l l y b u r n house - main f l o o r f i g . - south g r a n v i l l e park - t y p i c a l f l o o r lodge f i g . - st. m i c h a e l ' s centre - main f l o o r f i g . - parkwood manor - main f l o o r f i g . - a b b e y f i e l d concept - main f l o o r f i g . - arbutus ridge v i l l a g e - s i t e p l a n f i g . - h a u s j a r v i health care f a c i l i t y - s i t e plan and r e s i d e n t i a l c l u s t e r layout f i g . - motion p i c t u r e and t e l e v i s i o n country house and h o s p i t a l - e x i s t i n g s i t e p l a n and proposed s i t e development f i g . - regent p o i n t - s i t e plan f i g . - - s i n g l e family households with member age + f i g . - - s i n g l e family households with member age + f i g . - s i n g l e family households with member age + f i g . - p r o j e c t i o n of s e n i o r housing needed by to accommodate e l d e r l y homeowners f i g . - number of c l i e n t s r e c e i v i n g long term care home support or f a c i l i t y s e r v i c e s by l e v e l of care (december ) f i g . - number of c l i e n t s w a i t l i s t e d f o r long term care placement by l e v e l of care (december ) f i g . - access and c o n t r o l model of the ccc f a c i l i t y f i g . - common space i n the c l u s t e r as a garden f i g . - common space i n the c l u s t e r with shared walkway x i v f i g . - c l u s t e r i d e n t i t y r e i n f o r c e d by a c e n t r a l s i t t i n g area and shared storage shed f i g . - p e d e s t r i a n c i r c u l a t i o n developed as a "feeder" system. f i g . - independent l i v i n g outdoor spaces f i g . - long-term care f a c i l i t y access model f i g . - intermediate care f a c i l i t y f i g . - intermediate care c l u s t e r type f i g . - intermediate care c l u s t e r support f i g . - p r i v a t e outdoor spaces i n nursing home f i g . - extended care f a c i l i t y f i g . - extended care c l u s t e r type f i g . - extended care c l u s t e r support f i g . - core centre f i g . - main concourse f i g . - food s e r v i c e s f i g . - r e h a b i l i t a t i o n centre f i g . - a r t s and c r a f t s f i g . - auditorium and s p e c i a l programs f i g . - a d m i n i s t r a t i o n s u i t e f i g . - c l i n i c f i g . - pharmacy f i g . - l i b r a r y f i g . - outdoor common space f i g . -• l o c a t i o n and s i z e f i g . - land use context f i g . -• p u b l i c t r a n s p o r t a t i o n and v e h i c u l a r access xv f i g . - p e d e s t r i a n access f i g . - s i t e topography f i g . - v e g e t a t i o n and landscaping f i g . - p u b l i c and p r i v a t e views f i g . - p a t t e r n f i g . - p a t t e r n f i g . - p a t t e r n f i g . - p a t t e r n x v i list of tables table - p r o j e c t i o n s of the e l d e r l y home owners and the p o t e n t i a l movers i n vancouver: ( census) table - housing choices i n the ccc f a c i l i t y - table - housing type # : rental housing space program table - housing type # : co-op housing, d w e l l i n g u n i t s space program table - housing type # : s t r a t a t i t l e , d w e l l i n g u n i t s space program table - intermediate care c l u s t e r space program table - extended care c l u s t e r space program - table - main concourse space program table - food f a i r space program table - food s e r v i c e s f a c i l i t y space program table - r e h a b i l i t a t i o n centre space program table - a r t s and c r a f t s space program table - auditorium and s p e c i a l programs space program table - a d m i n i s t r a t i o n space program table - c l i n i c space program table - pharmacy and dispensary space program table - l i b r a r y space program table - s t a f f support f a c i l i t i e s space program table - laundry s e r v i c e s space program table - p l a n t s e r v i c e s space program table - b u i l d i n g s e r v i c e s space program x v i i table - m a t e r i a l s e r v i c e s space program table - f a c i l i t y common outdoor area space program table - p a r k i n g area program table - use of resources, t r a v e l time and d i s t a n c e to resources x v i i i acknowledgements i would l i k e to express my g r a t i t u d e to p r o f e s s o r j o e l shack f o r h i s s u p e r v i s i o n and encouragement. my s i n c e r e thanks are to p r o f e s s o r g l o r i a gutman and a r c h i t e c t c h a r l o t t e murray f o r t h e i r c o n s t r u c t i v e c r i t i c i s m and comments. furthermore, many thanks to p r o f e s s o r rose murakami f o r her p a r t i c i p a t i o n i n the d i s c u s s i o n of the t h e s i s . i would l i k e a l s o to thank a r c h i t e c t e m i l marek, ph.d., my husband, and m i c h a e l , my son, f o r t h e i r advice and a s s i s t a n c e . f i n a l l y , i am very g r a t e f u l to canada mortgage and housing c o r p o r a t i o n f o r the s c h o l a r s h i p which has made t h i s t h e s i s p o s s i b l e . introduction . the origin of my thesis my p e r s o n a l i n t e r e s t i n f a c i l i t i e s f o r the e l d e r l y began i n when i was i n v o l v e d i n a number of p r o j e c t s as an a r c h i t e c t i n poland. while working on an intermediate care f a c i l i t y i began to f e e l t h a t the e n t i r e programming and design process i s missing something. i r e a l i z e d t h a t d e s i g n i n g f o r the e l d e r l y i s a unique problem because the needs of those people change almost on a day-to-day b a s i s . designing a b u i l d i n g which responds to a s p e c i f i c program aimed at a s p e c i f i c group of e l d e r l y seems not to be an e f f e c t i v e approach to the needs of the e l d e r l y . i came to understand t h a t the e n t i r e programming and design process should not be c o n s i d e r e d a t r a d i t i o n a l a r c h i t e c t u r a l three dimen- s i o n a l problem but r a t h e r needs a f o u r dimensional approach. the f o u r t h dimension i s time -- the p r i n c i p a l f a c t o r i n under- standing the needs of e l d e r l y people. t h i s i d e a puts the whole p r o j e c t d e l i v e r y system i n a new p e r s p e c t i v e . . problem statement: british columbia background in the l a s t seventy f i v e years worldwide l i f e expectancy has s u b s t a n t i a l l y i n c r e a s e d and the p r o p o r t i o n of o l d e r c i t i z e n s has grown and i s growing c o n s t a n t l y . by the end of t h i s century, i n canada and p a r t i c u l a r l y i n b r i t i s h columbia the growing popula- t i o n aged years and over w i l l c r e a t e c h a l l e n g e s i n the way of h e a l t h c a r e , housing and p s y c h o - s o c i a l supports. t h i s s i t u a t i o n c a l l s f o r p l a n n i n g f o r housing and h e a l t h care s e r v i c e s f o r the e l d e r l y not o n l y i n much g r e a t e r s c a l e than we have ever e x p e r i - enced, but a l s o f o r a new approach based on the g r a d u a t i o n of care. therefore the problem, which i am i n v e s t i g a t i n g i n t h i s t h e s i s c o u l d be summarized b r i e f l y as f o l l o w s : "what are the u n d e r l y i n g p r i n c i p l e s i n p l a n n i n g housing and s e r v i c e s f o r the contemporary e l d e r l y ? " since the number of o l d e r persons age and over c o n t i n u e s to expand, housing with s u p p o r t i v e s e r v i c e s on s i t e (medical and p e r s o n a l care) w i l l be i n great demand. new housing forms t h a t provide f r e e c h o i c e , maximize independence, s t i m u l a t e the c r e a - t i v e and s e l f - e x p r e s s i v e needs of i n d i v i d u a l s and optimize con- t r o l over the environment are s t r o n g l y needed. the n o t i o n of graduation of care organized and d e l i v e r e d i n one s e t t i n g seems to be the a l t e r n a t i v e approach i n p l a n n i n g f o r the e l d e r l y . that n o t i o n has been s t r o n g l y endorsed by the canadian medical a s s o c i a t i o n ( , p. ). f a c i l i t i e s designed f o r use by e l d e r l y people can be charac- t e r i z e d by t h e i r s p e c i f i c s u p p o r t i v e l i v i n g and s o c i a l e n v i r o n - ments, and by d e l i v e r y of p e r s o n a l , s o c i a l and h e a l t h care s e r - v i c e s . the s e r v i c e s t h a t e l d e r l y people need can range from very low - i n a f u l l y independent person's p r i v a t e home to the high l e v e l of s e r v i c e s provided i n a n u r s i n g home. in b r i t i s h columbia, the p r o v i n c i a l government c u r r e n t l y uses the f o l l o w i n g terminology (see appx # - ) to d e s c r i b e the range: . those e l d e r l y capable of independent l i v i n g (il) . those r e q u i r i n g p e r s o n a l care (pc) . those r e q u i r i n g intermediate care ( l e v e l s : ic , ic , ic ) . those r e q u i r i n g extended care (ec) in the l a s t f o u r decades, the g u i d i n g p h i l o s o p h y i n d e v e l o p i n g housing f o r the e l d e r l y has undergone a r a d i c a l change. at the time when most "homes f o r the aged" where b u i l t , such f a c i l i t i e s were c o n s i d e r e d more i n s t i t u t i o n a l than r e s i d e n t i a l b u i l d i n g s . the c r i t i c s of the i n s t i t u t i o n a l model proposed t h a t the b e s t s o l u t i o n was to keep the e l d e r l y i n t h e i r own homes, but the problem could not be s o l v e d because of the p r o h i b i t i v e c o s t s i n the p r o v i s i o n of s o c i a l and h e a l t h care s e r v i c e s to p r i v a t e homes. as noted above, i n b r i t i s h columbia there are f i v e l e v e l s of care f o r the e l d e r l y : personal care, intermediate care ( l e v e l s ) and extended care. however, there i s no p r a c t i c a l example of a comprehensive f a c i l i t y i n b r i t i s h columbia which has implemented space f l e x i b i l i t y and program a d a p t a b i l i t y (as t r a n s i t i o n between the "go-go" e l d e r l y and "slow-go" e l d e r l y ) t h a t would p r o v i d e graduation of care f o r a l l l e v e l s i n one p l a c e . . definition of continuum of care a continuum of care f o r the e l d e r l y p r o v i d e s a l l l e v e l s of care i n one l o c a t i o n . a continuum of care f a c i l i t y can p r o v i d e a continuum of housing and care from independent l i v i n g to n u r s i n g care at the extended care l e v e l . the r a t i o n a l e behind the continuum of care idea i s to develop a new program f o r the e l d e r l y f a c i l i t y which might f u l f i l l e l d e r l y ' s d i v e r s e and changing needs. groups of people with s i m i l a r needs and r e q u i r e - ments w i l l be accommodated i n c l o s e p r o x i m i t y to one area w i t h i n p a r t i c u l a r components of a "continuum of care complex" (ccc) which w i l l o f f e r a r e l a t i v e l y f i x e d range of s e r v i c e s . how- ever, they w i l l a l s o have access to a g r e a t e r v a r i e t y of s e r - v i c e s i n the whole complex. a "continuum of care complex" might a l s o provide a d d i t i o n a l s e r v i c e s f o r the e l d e r l y t h a t l i v e i n the neighbourhood. . intentions of the thesis in t h i s t h e s i s ["senior c i t i z e n housing, implementing a con- tinuum of care environment"], i propose an a l t e r n a t i v e approach to p l a n n i n g housing and s e r v i c e s f o r the e l d e r l y . the t h e s i s has been developed as a h y p o t h e t i c a l model of a planning/programming system based on the p r i n c i p l e of the continuum of care, with the v a r i o u s elements b l e n d i n g together. t h i s h y p o t h e t i c a l model i n terms of a f a c i l i t y program has been developed i n the r e a l s i t u a - t i o n of the p o i n t grey community on the s e l e c t e d t e s t s i t e . t h i s t h e s i s i s an " a r c h i t e c t u r a l i n v e s t i g a t i o n " which f o c u s - es on " f a c i l i t y programming" f o r an i n n o v a t i v e approach to a continuum of care f a c i l i t y . f a c i l i t y programming i s f i r m l y e s t a b l i s h e d today as an important and necessary i n g r e d i e n t of the design process. according to palmer ( ), programming i s an a n a l y t i c a l aspect of design. programming, as an i n f o r m a t i o n - p r o c e s s i n g system, i n v o l v e s a d i s c i p l i n e d methodology of data c o l l e c t i o n , a n a l y s i s , o r g a n i z a t i o n , communication and evalua t i o n . the t h e s i s i s based on the f o l l o w i n g c y c l e : a n a l y s i s - s y n t h e s i s - e v a l u a t i o n : . analysis of the data d i s c o v e r e d i n the process of the a r c h i t e c t u r a l i n v e s t i g a t i o n . . synthesis of the f i n d i n g s i n the form of a ccc f a c i l i t y program. . evaluation of the p o s s i b i l i t y of the program development on the s e l e c t e d t e s t s i t e . t h i s t h e s i s w i l l t r y to d e f i n e a "continuum of c a r e " environment f o r the e l d e r l y i n terms of a program of housing as w e l l as p e r s o n a l , s o c i a l and h e a l t h care s e r v i c e s on one s i t e . generic r e s u l t s w i l l be b a s i c f u n c t i o n a l components (such as extended care), but s p e c i f i c w i l l be the a p p l i c a t i o n of compo- nents to a t e s t s i t e as an e v a l u a t i v e process c o n s i s t i n g of i n n o v a t i v e approach i n addressing the needs of the e l d e r l y a t a l l d i f f e r e n t l e v e l s of care and a l s o the way such a f a c i l i t y should respond to i t s s i t e and neighbourhood. in my t h e s i s i w i l l d e f i n e a "continuum of care" environment which may s a t i s f y a broad range of needs f o r the e l d e r l y : phy- s i c a l , p h y s i o l o g i c a l and p s y c h o l o g i c a l . on the b a s i s of the p u b l i s h e d r e s e a r c h and my p r i v a t e o b s e r v a t i o n s i w i l l s e t up a program which w i l l address t h i s p a r t i c u l a r environment and i d e n t i f y the design v a r i a b l e s which may improve q u a l i t y of l i f e f o r the e l d e r l y . my r e s e a r c h study w i l l be a p p l i e d on a s i t e i n p o i n t grey, vancouver, b r i t i s h columbia. the f e d e r a l n a t i o n a l defence lands s i t e has a unique s e t t i n g i n vancouver c l o s e to j e r i c h o beach and ubc. the s u b j e c t s i t e may serve as a p l a c e f o r f u t u r e development of housing as w e l l as a f a c i l i t y f o r s e n i o r s . the planning department recommends t h a t f l o o r space r a t i o be . to . and a l s o t h a t new development be compatible with the surrounding area of m u l t i - f a m i l y and s i n g l e f a m i l y housing. however, there are no o f f i c i a l g u i d e l i n e s r e g a r d i n g the s c a l e and scope of proposed development. t h i s t h e s i s w i l l be the f i r s t attempt i n proposing a s e n i o r c i t i z e n s ' housing develop- ment on t h i s s i t e . . research questions group i -- in terms of d e f i n i n g the e l d e r l y f a c i l i t y as a c o n t i n u a t i o n of the e l d e r l y person's l i f e s t y l e : . what o p p o r t u n i t i e s and c o n s t r a i n t s r e s u l t from moving an e l d e r l y person from h i s / h e r home to t h i s proposed ccc f a c i l i t y ? . how has the g u i d i n g p h i l o s o p h y i n d e v e l o p i n g housing f o r the e l d e r l y changed i n the l a s t four decades? group i i -- in terms of d e f i n i n g the phenomenon of the "continuum of care environment": . how can the ccc f u l f i l l the needs and e x p e c t a t i o n s of e l d e r l y r e s i d e n t s ? . how can the ccc respond to the needs of the neighbourhood's e l d e r l y r e s i d e n t s ? . what are the most important q u a l i t i e s i n c r e a t i o n of the ccc environment? group i i i -- in terms of the ccc s i t e development p o t e n t i a l : . what s i t e development o p p o r t u n i t i e s and c o n s t r a i n t s e x i s t on the t e s t s i t e ? . how can the outdoor spaces of the ccc respond to the p r o g r e s s i v e l e v e l s of care and t h e i r c o r r e s p o n d i n g s e r v i c e s ? . objectives of the thesis the p r i n c i p l e o b j e c t i v e of my r e s e a r c h study i s to f i n d out what can be done: . to c r e a t e an o p p o r t u n i t y f o r l i v i n g i n one p l a c e as long as p o s s i b l e . the e l d e r l y should be able to continue to l i v e i n the same p l a c e as long as p o s s i b l e and i f a move i s necessary because of d e t e r i o r a t i n g h e a l t h c o n d i t i o n s , i t should be w i t h i n the same f a c i l i t y . . to c r e a t e a s p e c i a l home-like environment which would f u l - f i l l a comprehensive a r r a y of e l d e r l y needs such as: eco- nomics ( a f f o r d a b i l i t y ) , s o c i o - p s y c h o l o g i c a l ( s u p p o r t i v e environments, peer groups) and p h y s i c a l (good q u a l i t y ; designed and l o c a t e d to accommodate the e l d e r l y with d i f f e r - ent l e v e l s of dependency). . to respond to the above o b j e c t i v e s a t the same time as p r o v i d i n g a way of l i f e f o r the e l d e r l y which w i l l recognize t h e i r i n d i v i d u a l r i g h t s , such as p r i v a c y , s e l f - d e t e r m i n a - t i o n , i n t e g r a t i o n and a l s o w i l l p r o v i d e the compensatory resources of the environment i n terms of a b a r r i e r - f r e e design, v a r i e t y of l i v i n g , a t t r a c t i v e i n t e r i o r s e t t i n g and landscape design. . methodology the t h e s i s f o l l o w s a r e s e a r c h method c y c l e of a n a l y s i s , s y n t h e s i s and e v a l u a t i o n : . analysis of c o l l e c t e d data: a. a n a l y s i s of e x i s t i n g f a c i l i t i e s f o r the e l d e r l y with d i f f e r e n t l e v e l s of dependency. . type of r e s e a r c h : a r c h i t e c t u r a l i n v e s t i g a t i o n and design data g a t h e r i n g . i have s e l e c t e d e i g h t e x i s t i n g f a c i l i t i e s (see appx. # - ) f o r the e l d e r l y i n the vancouver area, one i n h a l i f a x , and three i n c a l i f o r n i a , u.s.a. the s e l e c t i o n was based on i n f o r m a t i o n from the l i t e r a t u r e (gutman ; carstens ; cmhc conference ) and p e r s o n a l communications. the p r i n c i p l e c r i t e r i o n i n s e l e c t i n g these examples was t h a t they are f a c i l i t i e s which have implemented a p o l i c y of graduation of c a r e , o r g a n i z e d and d e l i v e r e d i n one s e t t i n g . i was s p e c i f i c a l l y l o o k i n g f o r the f u n c t i o n a l components mix and t h e i r c o n t r i b u t i o n to the q u a l i t y of the continuum of care environment. . research methods: comparative a n a l y s i s of design p r i n c i p l e s : the purpose of these analyses was to come up with programmatic c r i t e r i a and i n t e n t i o n s f o r a f a c i l i t y program implementing the continuum of care concept. the research procedures i was u s i n g : . f i n d i n g out how design d e c i s i o n s were made: a. a n a l y s i n g the a r c h i t e c t s * plans and r e c o r d s . t h i s process provided a b a s i s f o r hypotheses which were e x p l o r e d i n the e v a l u a t i o n of the p r o j e c t s . i t c l a r i f i - ed the goals of both the designer and the c l i e n t i n the e a r l y p l a n n i n g stages of the design. a n a l y s i s of the d e s i g n e r ' s plans over the p e r i o d of design development r e v e a l e d how ideas changed and were e v e n t u a l l y i n c o r p o - r a t e d i n the f i n a l design. b. i n t e r v i e w i n g the a r c h i t e c t s t h i s step allowed f u r t h e r e x p l o r a t i o n of the a r c h i - t e c t ' s design ideas and o b j e c t i v e s , p r o v i d i n g informa- t i o n about how and why s p e c i f i c d e s i g n d e c i s i o n s were made. c. p e r s o n a l observations i n the e x i s t i n g f a c i l i t i e s : numerous s i t e v i s i t s , watching the behaviour of r e s i d e n t s , i n t e r v i e w i n g r e s i d e n t s and p a t i e n t s , i n t e r v i e w i n g management and s t a f f . b. analysis of l i t e r a t u r e : . type of r e s e a r c h : i n v e s t i g a t i o n and data g a t h e r i n g on contemporary models of housing f o r the e l d e r l y . . research methods: review of the a v a i l a b l e l i t e r a t u r e d e a l i n g with the s p e c i f i c i s s u e s d i r e c t l y r e l a t i n g to the cc environment: a. l i v i n g environment f o r the e l d e r l y . b. psychology of aging process. c. s o c i o l o g y i n terms of how the p o s t - i n d u s t r i a l s o c i e t y should take care of i t s e l d e r l y people. d. plans and l a y o u t s of new and i n n o v a t i v e design s o l u t i o n s implemented i n long-term care f a c i l i t i e s . c. interviews . type of r e s e a r c h : s t r u c t u r e d i n t e r v i e w s with p r o f e s s i o n a l s i n v o l v e d i n the s u b j e c t of my t h e s i s (see appendix # - ). there i n c l u d e d the f o l l o w i n g : a r c h i t e c t s long-term care f a c i l i t y a d m i n i s t r a t o r s . f a c i l i t y programmers. health care a u t h o r i t i e s o f f i c i a l s developers residents c i t y h a l l planners . research methods: a l l i n t e r v i e w s have been c a r e f u l l y s t r u c - t u r e d i n order to o b t a i n maximum i n f o r m a t i o n on v a r i o u s sub- j e c t s and f u n c t i o n a l component i s s u e s r e l a t i n g to my t h e s i s ; i n p a r t i c u l a r i was l o o k i n g f o r s p e c i f i c i n f o r m a t i o n con- c e r n i n g : a r c h i t e c t s : p l a n s , l a y o u t s , environment. developers: market t r e n d s , s e r v i c e p r e f e r e n c e s , f i s c a l aspects of p r o j e c t f i n a n c i n g . c i t y p l a n n e r s : zoning r e g u l a t i o n s and design g u i d e l i n e s . h e a l t h o f f i c i a l s : l o c a l care needs. residents: t h e i r needs. d. analysis of e x i s t i n g l e g i s l a t i o n and design g u i d e l i n e s (see appendix # - ). . type of r e s e a r c h : i n v e s t i g a t i o n and comparative a n a l y s i s of the s t a t u t o r y r e g u l a t i o n s r e l a t i n g to the f u n c t i o n a l components developed i n t h i s t h e s i s . . research methods: i d e n t i f i c a t i o n of e x i s t i n g r e g u l a t i o n s i n terms of: a. area, space requirements. b. s e r v i c e and t e c h n i c a l r e g u l a t i o n . c. user needs and demands. d. program components e. o p e r a t i o n p o l i c y g u i d e l i n e s . . synthesis i n the form of the ccc f a c i l i t y program (chapter & ) . . type of approach: i n t e r d i s c i p l i n a r y -- a r c h i t e c t u r e , gerontology, s o c i o l o g y . . the methods: f u l l programming c y c l e (data o r g a n i z a t i o n and data communication) l e a d i n g to the d e f i n i t i o n of components of a f a c i l i t y program f o r the ccc f a c i l i t y i n the p o i n t grey area i n vancouver. . evaluation i n the form of the f e a s i b i l i t y of ccc program development on the s e l e c t e d t e s t s i t e . . type of approach: comprehensive s i t e a n a l y s i s i n terms of a program implementation on the t e s t s i t e . . the methods: d e f i n i n g development o p p o r t u n i t i e s and con- s t r a i n t s i n a t e s t s i t e s i t u a t i o n . . layout of the thesis the t h e s i s i s s u b d i v i d e d i n t o an i n t r o d u c t i o n , f i v e chapters which develop the argument of t h e s i s and a c o n c l u d i n g chapter s i x . the s t r u c t u r e of the t h e s i s f o l l o w s the methodology out- l i n e d i n p o i n t . - research cycle and methods. the s i x chap- t e r s of the t h e s i s are d i v i d e d i n t o a three segment r e s e a r c h c y c l e : a n a l y s i s - s y n t h e s i s - e v a l u a t i o n as f o l l o w s : anaylysis: t h i s segment i n c l u d e s chapter one and two. i t g i v e s an overview of the e x i s t i n g trends i n contemporary f a c i l i t i e s f o r the e l d e r l y with emphasis on the m u l t i l e v e l approach. t h i s p a r t p r o v i d e s a l s o a review of new p o l i c i e s i n the p l a n n i n g of f u t u r e housing and long-term care f a c i l i t i e s i n the g r e a t e r vancouver r e g i o n a l d i s t r i c t . as w e l l , d i s c u s s i o n of the s o c i a l p r o f i l e of the p o t e n t i a l r e s i d e n t s i n the p o i n t grey area, serves as a background f o r the t h e s i s . synthesis: t h i s segment i n c l u d e s chapter t h r e e , f o u r and f i v e . i t s y n t h e s i z e s the f i n d i n g s of the p r e v i o u s segment i n t o a comprehensive f a c i l i t y program. evaluation: the c o n c l u s i o n of my r e s e a r c h study t h e s i s i s presented i n chapter s i x . i t c o n t a i n s a comprehensive s i t e a n a l y s i s i n the form of a f e a s i b i l i t y study of development i n a r e a l s i t u a t i o n . chapter - the continuum of care concept chapter summary: chapter i s the beginning of the t h e s i s a n a l y s i s c y c l e and i n t r o d u c e s the n o t i o n of m u l t i - l e v e l of care of the e l d e r l y . on the b a s i s of s e l e c t e d examples, three major trends or approaches to the e l d e r l y f a c i l i t i e s have been i d e n t i f i e d . a n a l y s i s of the l i t e r a t u r e and a c t u a l p r o j e c t s , l e d to s e v e r a l c o n c l u s i o n s about m u l t i - l e v e l care f a c i l i t i e s and c h a r a c t e r i s t i c design f e a t u r e s c o n t r i b u t i n g to a q u a l i t y environment. many of those f i n d i n g s have been implemented i n the t h e s i s s y n t h e s i s p o r t i o n . current p r o v i n c i a l and gvrd p o l i c i e s and recommendations r e g a r d i n g housing f o r the e l d e r l y have been analyzed. these f i n d i n g s provided grounds to s t a t e the problem. the chapter concludes with the proposed continuum of care complex i n a r e a l s i t u a t i o n and the t h e s i s r a t i o n a l e . . literature and projects review: concepts of multi-level elderly housing. i n t r o d u c t i o n : current trends i n m u l t i - l e v e l care of the e l d e r l y in recent years, a number of d i r e c t i o n s have been explored i n the p l a n n i n g of housing and long-term care f a c i l i t i e s f o r the e l d e r l y . in b r i t i s h columbia, there are a s m a l l number of pro- j e c t s i n which i n n o v a t i v e approaches to e l d e r l y f a c i l i t i e s are employed. the f o l l o w i n g s e l e c t e d examples i n t r o d u c e three major trends: the f i r s t combines more than one l e v e l of care i n the same f a c i l i t y ; the second p r o v i d e s s u p p o r t i v e l i v i n g and congregate housing; and the t h i r d extends the independence of the e l d e r l y through a s s o c i a t i o n with peer groups i n a l u x u r i o u s and s t i m u l a t i n g environment. f i r s t trend f i r s t , there i s a trend to combine two or three l e v e l s of care i n one f a c i l i t y . while r e c o g n i t i o n has been growing t h a t v a r i o u s forms of a s s i s t a n c e are needed to maintain f r a i l o l d e r people i n the community, there i s a l s o a f e a r t h a t too much support and a s s i s t a n c e i n the form of long-term care can be inap- p r o p r i a t e and may l e a d to premature l o s s of f u n c t i o n a l indepen- dence. however, as people age and become more dependent v a r i o u s kinds of support may be needed. to respond to these needs, the m u l t i - l e v e l f a c i l i t y p r o v i d e s p r o g r e s s i v e care f o r the e l d e r l y r e s i d e n t s as w e l l as d i f f e r e n t mixes of s o c i a l s e r v i c e s . accord- i n g to gutman ( ), there are s e v e r a l advantages i n f a c t , because a m u l t i - l e v e l care f a c i l i t y : . may reduce r e l o c a t i o n s t r e e s e f f e c t s . . enables couples to remain i n c l o s e p r o x i m i t y when the h e a l t h of one d e t e r i o r a t e s . . f a c i l i t a t e s adjustments i n s e r v i c e l e v e l to meet temporary changes i n needs. . enables i n d i v i d u a l s r e h a b i l i t a t e d to a h i g h e r l e v e l of f u n c t i o n i n g to remain i n p r o x i m i t y to s t a f f and r e s i d e n t s with whom r a p p o r t has been e s t a b l i s h e d . . enables economies of s c a l e (both c a p i t a l and o p e r a t i n g ) i n b a s i c and s p e c i a l i z e d s e r v i c e s . second trend s t u d i e s of trends and consumer p r e f e r e n c e s r e v e a l t h a t congregate housing i s more d e s i r e d by the consumer today than i t was years ago (gaskie, a r c h i t e c t u r a l record, ). taking the m i d p o s i t i o n between a n u r s i n g home and independent housing, congregate housing p r o v i d e s an arrangement l e s s s t r i n g e n t than a long-term care f a c i l i t y and more s u p p o r t i v e than c o n v e n t i o n a l e l d e r l y housing. u s u a l l y , the congregate home p r o v i d e s an around-the-clock nonmedical "watch", minimum one or two prepared meals, l i m i t e d p e r s o n a l care and s e v e r a l s o c i a l s e r v i c e s . in congregate l i v i n g , each r e s i d e n t has a p r i v a t e i n d i v i d u a l u n i t , which u s u a l l y i n c l u d e s a small k i t c h e n , bedroom, bathrom and s i t t i n g space; but communal f a c i l i t i e s such as c e n t r a l k i t c h e n , d i n i n g room and lounge are shared. there are f i v e types of congregate s e t t i n g s : the small apartment, the l a r g e apartment, the apartment b u i l d i n g , the congregate house and the r e s i d e n t i a l h o t e l congregate (welch, parker and z e i s e l ). congregate housing i s u s u a l l y owned and operated by a p u b l i c or n o n - p r o f i t agency. tenants o f t e n accept r e s p o n s i b i l i t i e s f o r a s s i s t i n g s t a f f i n management and maintenance a c t i v i t i e s . con- gregate l i v i n g p r o v i d e s o p p o r t u n i t i e s f o r mutual awarness and i n f o r m a l s o c i a l support among e l d e r l y r e s i d e n t s and at the same time preserves t h e i r independence. t h i r d t r e n d retirement v i l l a g e s or l e i s u r e l i f e s t y l e communities provide a l t e r n a t i v e l i v i n g accomodation f o r wealthy s e n i o r s capable of independent l i v i n g . because b r i t i s h columbia and e s p e c i a l l y the lower mainland, boasts a moderate c l i m a t e , i t i s here t h a t the g r e a t e s t number of r e t i r e m e n t communities have been b u i l t . these developments promote a l e i s u r l y , c a r e f r e e l i f e s t y l e by o f f e r i n g s i n g l e - f a m i l y homes, apartments or townhouses with s p e c i a l f e a t u r e s (eg. wheelchair a c c e s s i b l e , l a c k of s t a i r s ) and s e v e r a l amenities f o r r e c r e a t i o n . club houses are p r o v i d e d f o r p a r t i e s , b i l l a r d s , cards and other games. some developments have swimming p o o l s , hot tubs, p u t t i n g greens, g o l f courses and other. s o p h i s t i c a t e d s e c u r i t y systems with video s u r v e i l l a n c e , e l e c t r o n i c a l l y c o n t r o l l e d entry-gates and e l a b o r a t e b u r g l a r alarms are common f e a t u r e s i n many r e t i r e m e n t communities. although h e a l t h - c a r e i s u s u a l l y not provided i n the r e t i r e m e n t v i l l a g e concept some v i l l a g e s employ a f u l l - t i m e nurse or pro- vide p e r s o n a l and a s s i s t e d l i v i n g care f o r those who might other- wise be c o n f i n e d to n u r s i n g homes. the r e t i r e m e n t communities allow o l d e r people the extended independence through a s s o c i a t i o n with peer groups i n a s t i m u l a t i n g luxury environment. . . . greater vancouver regional district area and british columbia. trend - more than one l e v e l on the same s i t e . example # : seton v i l l a i n north burnaby, b.c. seton v i l l a , a m u l t i l e v e l f a c i l i t y run by a n o n - p r o f i t o r g a n i z a t i o n , o f f e r s s e l f - c o n t a i n e d s u i t e s , board-residence and p e r s o n a l care i n one n i n t e e n - s t o r e y b u i l d i n g . the b u i l d i n g i s d i v i d e d i n t o two p a r t s : the r e s i d e n t i a l p a r t and the common f a c i l i t y p a r t . the r e s i d e n t i a l p a r t i s comprised of u n i t s of s e l f contained s u i t e s (one bedroom or bachelor) l o c a t e d on the th to th f l o o r s , room and board u n i t s on the th to th f l o o r s and p e r s o n a l care beds on the nd to th f l o o r . the common f a c i l i t i e s are l o c a t e d on the main f l o o r of the b u i l d i n g , i n the basement and on the top f l o o r . a communal d i n i n g room, k i t c h e n , and the a d m i n i s t r a t i o n area are l o c a t e d on the main f l o o r . a health spa component c o n t a i n i n g an e x c e r c i s e p o o l , a thermal p o o l , showers and changing rooms as w e l l as an a r t s and c r a f t s component are l o c a t e d i n the basement. on the top f l o o r of the b u i l d i n g , there i s the lounge, which i s used as a m u l t i - purpose room f o r d i f f e r e n t a c t i v e and p a s s i v e a c t i v i t i e s . adjacent to the lounge there i s a beauty p a r l o u r / b a r b e r shop. the auditorium component (which can accommodate , seated t h e a t r e s t y l e ) i s l o c a t e d i n a separate b u i l d i n g , attached to main b u i l d i n g by a covered ramp. the a d m i n i s t r a t i o n of the f a c i l i t y p r o v i d e s a very warm, home l i k e atmosphere with s e v e r a l a t t r a c t i v e s o c i a l programs and i n v o l v e s r e s i d e n t s i n management of the f a c i l i t y . seton v i l l a i s a very good example of a f a c i l i t y f o r the e l d e r l y which provides a secure environment with a p r o g r e s s i v e care system from independent l i v i n g to personal care (some intermediate care i s a l s o i n f o r m a l l y provided) as w e l l as a s t i m u l a t i n g e n v i r o n - ment with a v a r i e t y of amenities and s e r v i c e s . however, f o r those whose h e a l t h s e v e r l y d e t e r i o r a t e s , i t i s a necessary to move to a intermediate or extended care f a c i l i t y . example # : h o l l y b u r n house, west vancouver, b.c. (see f i g . - ) i d e a l l y l o c a t e d blocks from the shops at ambleside, opposite a l i b r a r y and next to a s e n i o r s a c t i v i t y centre, h o l l y b u r n house p r o v i d e s accommodation f o r the a f f l u e n t e l d e r l y . run by a p r i v a t e , p r o f i t o r i e n t e d o r g a n i z a t i o n , the f a c i l i t y i s designed to provide two l e v e l s of care: r e s i d e n t i a l (personal) and intermediate care. the b u i l d i n g i s d i v i d e d i n t o two f u n c t i o n a l p a r t s . p a r t one i s comprised of s e l f - c o n t a i n - ed unfurnished apartments (bachelor, one-bedroom, two-bedroom s u i t e s ) l o c a t e d i n the second and t h i r d f l o o r s and reception- a d m i n i s t r a t i o n area as w e l l as s o c i a l and d i n i n g spaces on the ground f l o o r l e v e l . the south s i d e of the b u i l d i n g has been designed as a s o c i a l d i n i n g space with a conference room and bar, while the n o r t h s i d e c o n t a i n s c r a f t s , cards, e x e r c i s e room, small shop, c l i n i c and beauty salon. p a r t two - care centre: intermediate l e v e l and i s l o c a t e d on the ground f l o o r l e v e l and comprises f u r n i s h e d s i n g l e u n i t s with s o c i a l and d i n i n g space. the k i t c h e n and s t a f f f a c i l i t i e s are l o c a t e d i n the core of the main f l o o r and serve these two p a r t s s i m u l t a n e o u s l y . although the f a c i l i t y provides " q u a l i t y of l i f e " with choice of s e r v i c e s , programs and l i v i n g arrangement, there i s s t i l l a problem with r e l o c a t i o n s t r e s s f o r those whose h e a l t h c o n d i t i o n s r e q u i r e extended care. n e v e r t h e l e s s , the combination of independent l i v i n g with an intermediate care f a c i l i t y p o i n t s out to a new approach to the p r o g r e s s i v e care system. the c r e a t e d o p p o r t u n i t y f o r s o c i a l i n t e g r a t i o n between two groups of r e s i d e n t s may be s t i m u l a t i n g f o r l e s s able e l d e r l y . for independent l i v i n g r e s i d e n t s p o t e n t i a l of f u t u r e care i n the intermediate care p o r t i o n of the f a c i l i t y w i l l assure s e c u r i t y when one's h e a l t h d e t e r i o r a t e s . a v a r i e t y of l i v i n g arrangements - s e v e r a l l a y o u t s of one and two-bedroom s u i t e s , b e a u t i f u l l y designed outdoor spaces, f r i e n d l y management and p r o x i m i t y to community s e r v i c e s may c o n t r i b u t e to the w e l l being of r e s i d e n t s . a l l these a t t r i b u t e s should be employed i n the ccc f a c i l i t i e s . example # :south g r a n v i l l e park lodge,vancouver bc(see f i g . - ) designed f o r r e s i d e n t s , south g r a n v i l l e park lodge provides s e r v i c e s f o r r e s i d e n t s at the p e r s o n a l care l e v e l and f o r r e s i d e n t s at intermediate care l e v e l s , and . the f a c i l i t y o f f e r s -hour n u r s i n g s u p e r v i s i o n , meals i n the common d i n i n g room, housekeeping, and s e v e r a l a t t r a c t i v e s o c i a l programs. the three s t o r e y b u i l d i n g i s d i v i d e d i n t o two wings. on the main f l o o r , there i s the r e c e p t i o n - a d m i n i s t r a t i o n area, spacious lounge, d i n i n g room, multipurpose room and s i x handicapped u n i t s . the two r e s i d e n t i a l f l o o r s comprise personal or intermediate care u n i t s i n each wing with c e n t r a l l y l o c a t e d nursing s t a t i o n and s o c i a l area. f i g . - south g r a n v i l l e park lodge - t y p i c a l f l o o r source: south g r a n v i l l e park lodge the long c o r r i d o r s and anonymous entrances to each s l e e p i n g u n i t as w e l l as l a c k of b a l c o n i e s as p r i v a t e outdoor spaces provide an i n s t i t u t i o n a l c h a r a c t e r to the b u i l d i n g . although the f a c i l i t y p r o v i d e s two l e v e l s of care, i f t h e i r h e a l t h d e t e r i o r a t e s , r e s i d e n t s s t i l l are f o r c e d to move once again to an extended care f a c i l i t y . example # : st. michael's centre, burnaby, b.c. (see f i g . - ). the most advanced approach i n terms of a m u l t i - l e v e l care f a c i l i t y i n the vancouver area, was the o r i g i n a l concept of the st. michael's centre. run by a n o n - p r o f i t , r e l i g i o u s o r g a n i z a t i o n , the o r i g i n a l f a c i l i t y program c a l l e d f o r a m u l t i - l e v e l care complex with day care and home care s e r v i c e s to those s e n i o r s l i v i n g i n the neighbourhood; p e r s o n a l and intermediate care f o r those who can no longer remain independent as r e s i d e n t s o u t s i d e the centre and the extended care f o r those r e q u i r i n g hour a day p r o f e s s i o n a l s u p e r v i s i o n . at the present time, the f a c i l i t y i s comprised of intermediate care beds and extended care beds with common spaces: d i n i n g room, small a c t i v i t y and therapy areas, lounge and a u x i l i a r y spaces. day care p r e v i o u s l y programmed w i t h i n the f a c i l i t y , i s l o c a t e d across the s t r e e t i n a separate b u i l d i n g . there i s a proposal f o r f u t u r e expansion of the e x i s t i n g f a c i l i t y to accommodate a d d i t i o n a l beds at the extended care l e v e l . i t seems t h a t the i n i t i a l idea of c r e a t i o n of a m u l t i - l e v e l f a c i l i t y with c o n t i n u a - t i o n of care i s transformed i n t o i n s t i t u t i o n a l approach -- a g e r i a t r i c complex with the intermediate and extended care l e v e l s only. trend - congregate housing example # : parkwood manor, coquitlam, b.c. (see f i g . - ) parkwood manor i s an example of the second t r e n d i n the development of e l d e r l y f a c i l i t i e s i n b r i t i s h columbia. t h i s congregate house-hotel type was founded by a p r o f i t o r i e n t e d o r g a n i z a t i o n i n the heart of coquitlam on acres of b e a u t i f u l l y landscaped grounds. the coquitlam shopping centre i s only one block away. churches, medical o f f i c e s , a l i b r a r y and other community s e r v i c e s are a l s o i n c l o s e p r o x i m i t y to the s i t e . the t h r e e - s t o r y b u i l d i n g i s comprised of f o u r r e s i d e n t i a l wings with one-bedroom and two-bedroom u n i t s and a c e n t r a l p a r t with the main s o c i a l space. on the ground f l o o r l e v e l , i n the core of the b u i l d i n g , there i s an elegant d i n i n g room o v e r l o o k i n g the f r o n t yard, while lounge and s o c i a l a c t i v i t i e s areas overlook a formal garden. the f a c i l i t y provides comfortable accommodation, convenience, s e c u r i t y and o p p o r t u n i t i e s f o r s o c i a l i n t e r a c t i o n among r e s i d e n t s . however, t h i s l u x u r i o u s environment i s aimed at r e t i r e d , a c t i v e and a f f l u e n t e l d e r l y people. one i n c l u s i v e monthly fee covers r e n t a l of a l l p r i v a t e , spacious apartments, u t i l i t i e s , weekly maid and laundry s e r v i c e s , r e g u l a r d i n i n g room meal s e r v i c e , use of a l l in-house r e c r e a t i o n a l f a c i l i t i e s , parking and hour emergency c a l l and s e c u r i t y . since the f a c i l i t y p r o v i d e s only r e s i d e n t i a l (personal) care, when the f i g . - parkwood manor - main f l o o r source: waisman dewar grout c a r t e r a r c h i t e c t s h e a l t h of a r e s i d e n t s d e t e r i o r a t e s they have to move to a h e a l t h care f a c i l i t y . that i s the main disadvantage of congregate housing. example # : a b b e y f i e l d , sidney, b.c. (see f i g . - ) the a b b e y f i e l d concept i s an example of congregate housing f o r a maximum of people who l i v e with a l i v e - i n housekeeper (cmhc, nha ). o r i g i n a t e d i n england i n , t h i s concept i s u s u a l l y l o c a t e d i n a l a r g e house i n which seven to ten people are accommodated, a l l with t h e i r own p r i v a t e spaces. however, r e s i d e n t s share a common d i n i n g room, k i t c h e n and l i v i n g room. to a s s i s t a l l r e s i d e n t s , there i s a l i v e - i n housekeeper who attends to the d a i l y running of the house, the shopping, and prepares and serves meals. the f i r s t canadian prototype was opened i n september i n sidney, b.c. although t h i s concept c r e a t e s a c l o s e - c i r c l e atmosphere, s u p p o r t i v e l i v i n g and an o p p o r t u n i t y f o r s o c i a l i n t e r a c t i o n s , n e v e r t h e l e s s there i s a l a c k of s e c u r i t y , when one's h e a l t h s e v e r e l y d e t e r i o r a t e s , n e c e s s i t a t i n g a move to an i n s t i t u t i o n . trend - retirement v i l l a g e s example # : arbutus ridge v i l l a g e , vancouver i s l a n d , b.c. (see f i g . - ) arbutus ridge v i l l a g e i s an example of a l u x u r y r e t i r e m e n t complex aimed a t s e l f - s u f f i c i e n t , a c t i v e and wealthy s e n i o r s . t h i s p r o j e c t has adopted an e n g l i s h - c o u n t r y v i l l a g e theme. f i g . - a b b e y f i e l d concept - main f l o o r source: murray, c h a r l o t t e . supportive housing f o r s e n i o r s : the elements and issues f o r a canadian model. , p. . f i g . - arbutus ridge v i l l a g e - s i t e plan source: canadian retirement c o r p o r a t i o n brochure located on acre of w a t e r f r o n t land, the v i l l a g e w i l l be comprised, when completed, of s i n g l e f a m i l y detached and attached homes and the c e n t r e . the c e n t r e e i g h t b u i l d i n g s i n c l u d e such amenities as c r a f t and t e a c h i n g room, heated swimming p o o l , j a c u z z i , h e a l t h c l u b , post o f f i c e , banquet and k i t c h e n f a c i l i t y as w e l l as commercial a m e n i t i e s , such as bank, small grocery shop and beauty shop. the v i l l a g e f e a t u r e s s e v e r a l outdoor a c t i v i t i e s : t e n n i s , horseshoes, walking pathways, s h u f f l e b o a r d , year round f i s h i n g and nine-hole g o l f course, which p r o v i d e s a l s o a l u x u r i o u s p a r k - l i k e s e t t i n g f o r a l l r e s i d e n t s . arbutus ridge v i l l a g e o f f e r s a s t i m u l a t i n g environment f o r e l d e r l y r e s i d e n t s . they have a choice of s o c i a l and r e c r e a t i o n a l a c t i v i t i e s ; s e c u r i t y and peace of mind by p r o v i d i n g emergency s i g n a l system and the "community f e e l i n g " . in s p i t e of advantages, the v i l l a g e does not p r o v i d e s e c u r i t y i n terms of h e a l t h care. i t can be obtained, however, by purchasing "home care" s e r v i c e s and medical care i n adjacent communities: m i l l bay or duncan. n e v e r t h e l e s s , there w i l l be s t i l l a problem f o r more f r a i l e l d e r l y , who r e q u i r e h e a l t h care beyond what can be provided at home. . . . other parts of canada example # : northwoodcare complex, h a l i f a x , n.s. founded i n by edward l. roach, p r e s i d e n t of h a l i f a x senior c i t i z e n s housing c o r p o r a t i o n , northwood care inc. i s a n o n - p r o f i t o r g a n i z a t i o n which has developed a " s h e l t e r " , "care" and "reachout" f a c i l i t y . some r e s i d e n t s of northwood enjoy a v a r i e t y of l i v i n g accommodations from independent l i v i n g to i n s t i t u t i o n a l care, i n a d d i t i o n to the p r o v i s i o n of " h e a l t h maintenance", " h e a l t h promotion", " i l l n e s s p r e v e n t i o n " , and other " l i f e - e n r i c h m e n t " programs through northwood's m u l t i - purpose centre. the centre has been developed i n phases. the f i r s t phase s t a r t e d i n with a -unit s e l f - c o n t a i n e d apartment b u i l d i n g f o r the e l d e r l y . than, i n a t e n - s t o r e y high r i s e was b u i l t with p r o g r e s s i v e l e v e l s of care: s e l f - c o n t a i n e d apartments, " s u p e r v i s o r y " care beds and " p e r s o n a l " care beds. in the next phase the complex was i n c r e a s e d by a n i n e - s t o r y , bed "nursing" home which i n c o r p o r a t e d , on the main f l o o r , a " m u l t i - purpose centre". in , the complex i n t r o d u c e d the f i r s t a d u l t day care program i n nova s c o t i a . in the f o l l o w i n g years other f a c i l i t i e s and s e r v i c e s were i n t r o d u c e d such as a c h i l d care centre, home support s e r v i c e and r e s p i t e care. northwood centre has c r e a t e d , over a twenty f i v e year span, a model of e x c e l l e n c e t h a t has stood the t e s t of time (rogers ). today, the northwood care complex has implemented a l l the necessary program components to ensure a comprehensive care system f o r i t s r e s i d e n t s . the f a c i l i t y o f f e r s a s t i m u l a t i n g environment i n the multipurpose c e n t r e . . . europe there are other concepts of care f o r the aging t h a t could be implemented even w i t h i n the e x i s t i n g n u r s i n g homes or other types of f a c i l i t i e s . for example, the b r i t i s h have a system of day and n i g h t care f a c i l i t i e s f o r the aging. i f a person has nowhere to go d u r i n g the day (or l i v e s with someone who works) and needs care, these f a c i l i t i e s may provide care d u r i n g the day (or n i g h t ) . s i m i l a r l y i n sweden, f i n l a n d , denmark and a l s o i n the e a s t e r n european c o u n t r i e s , the t r e n d i s to provide a f u l l spectrum of s e r v i c e s i n the r e s i d e n t i a l s e t t i n g (hogland, ). a l l those f a c i l i t i e s t r y to meet a v a r i e t y of needs of the e l d e r l y . example # : h a u s j a r v i , f i n l a n d (see f i g . - ) in f i n l a n d , there was r e c e n t l y an a r c h i t e c t u r a l c o m p e t i t i o n f o r "more human h e a l t h f a c i l i t i e s " i n h a u s j a r v i , a t y p i c a l r u r a l m u n i c i p a l i t y . the f i r s t p r i z e winner has proposed a primary h e a l t h c e n t r e , an extended care ward of beds, an old-age home designed f o r about r e s i d e n t s and a community c e n t r e f o r other e l d e r l y people l i v i n g i n the neighbourhood ( k o t i l a i n e n , ). . . . the united states of america example # : motion p i c t u r e and t e l e v i s i o n country house and h o s p i t a l , woodland h i l l s , ca (see f i g . - ). residents of a m u l t i l e v e l care f a c i l i t y - motion p i c t u r e and t e l e v i s i o n country house and h o s p i t a l i n woodland h i l l s i n c a l i f o r n i a are sponsoring t h e i r own community. a l l r e s i d e n t s a f i g . - h a u s j a r v i health care f a c i l i t y : a - s i t e plan, b - re- s i d e n t i a l c l u s t e r layout source: h a u s j a r v i health centre and old people's home design competition. a r k k i t e h t u u r i k i l p a i l u j a . , ,pp. - . have worked i n the motion p i c t u r e and t e l e v i s i o n i n d u s t r y and have c o n t r i b u t e d to a fund over a p e r i o d of years to guarantee t h e i r l i f e care. founded i n , the motion p i c t u r e and t e l e v i s i o n fund p r o v i d e s h e a l t h care and housing f o r r e t i r i n g members of the entertainment i n d u s t r y . on a f o r t y - o n e acre country s i t e the mptf operates three somewhat d i s t i n c t communi- t i e s : f i r s t , a lodge f o r the intermediate care r e s i d e n t s ; second, semiattached country-type cottages f o r semi to f u l l y independent l i v i n g and t h i r d , a modern acute care f a c i l i t y . the n a t u r a l c h a r a c t e r of the s i t e i s preserved by a landscape and waterway system which enhances the e a r l y c a l i f o r n i a v e r n a c u l a r a r c h i t e c t u r e . the c u r r e n t p r o j e c t designed by bobrow, thomas and a s s o c i a t e s , an a r c h i t e c t u r a l f i r m i n los angeles, i n c l u d e s expansion of the acute care h o s p i t a l , and a d d i t i o n of a s k i l l e d nursing f a c i l i t y , and cottages f o r semi-independent l i v i n g . a l s o planned are a new a d m i n i s t r a t i o n b u i l d i n g and the outpa- t i e n t c l i n i c . with these a d d i t i o n s , the mptf w i l l be able to provide comprehensive care f o r n e a r l y r e s i d e n t s . example # : regent p o i n t , pasadena, ca (see fig. - ) regent p o i n t , i s a r e t i r e m e n t community owned and operated by the southern c a l i f o r n i a p r e s b y t e r i a n homes. designed by neptun & thomas a s s o c i a t e s i n pasadena, the f a c i l i t y has u n i t s : semi-attached l o w - r i s e u n i t s f o r independent l i v i n g , p e r s o n a l care u n i t s i n a four s t o r y apartment b u i l d i n g , and s k i l l e d n u r s i n g - c a r e u n i t s i n a two-story b u i l d i n g . a c e n t r a l l y motion p i c t u r e and t e l e v i s i o n country house and hos- p i t a l - e x i s t i n g s i t e plan and proposed s i t e develop- ment . carstens, diane y. s i t e planning and design f o r the e l d e r l y - issues, g u i d e l i n e s and a l t e r n a t i v e s . , pp. - . f i g . - source: f i g . - regent p o i n t - s i t e plan source: carsten diane y. s i t e planning and design f o r the e l d e r l y - issues, g u i d e l i n e s and a l t e r n a t i v e s . , p. . l o c a t e d d i n i n g p a v i l i o n and r e c r e a t i o n centre i s connected with semi-independent l i v i n g u n i t s . the s i t e has been developed to maximize i t s h i l l t o p view of the a d j o i n i n g r e g i o n a l park. . . . conclusion a l l of the f o r e g o i n g examples i n c l u d e s e v e r a l m e r i t s i n the c r e a t i o n of a s p e c i f i c environment f o r e l d e r l y people. the m u l t i - l e v e l care f a c i l i t i e s provide p r o g r e s s i v e care and a v a r i e t y of s o c i a l s e r v i c e s . the congregate examples provide supportive l i v i n g i n c l o s e - c i r c l e home-like atmosphere and an o p p o r t u n i t y f o r s o c i a l i n t e r a c t i o n . the r e t i r e m e n t v i l l a g e s c r e a t e "community f e e l i n g s " i n s t i m u l a t i n g l e i s u r e o r i e n t e d environment. a l l these approaches may have a g r e a t impact on w e l l - b e i n g and l i f e s a t i s f a c t i o n of the e l d e r l y . t h i s t h e s i s w i l l propose a ccc f a c i l i t y program which w i l l t r y to implement many of a l l these f e a t u r e s i n order to c r e a t e a q u a l i t y m u l t i - l e v e l care environment. . . review of the current policies of elderly housing in the l a s t seventy f i v e years, l i f e expectancy has i n c r e a s - ed s u b s t a n t i a l l y and the p r o p o r t i o n of o l d e r c i t i z e n s has grown and i s growing c o n s t a n t l y . in b r i t i s h columbia, the i n c r e a s e i n the e l d e r p o p u l a t i o n i s s u b s t a n t i a l l y g r e a t e r than f o r canada as a whole. in , . % of b r i t i s h columbians were aged and over; % were aged and over. p r o j e c t i o n s f o r the year are . % and . % r e s p e c t i v e l y (seaton r. and m. rajan ). c e n t r a l s t a t i s t i c s bureau p r o j e c t i o n s f o r the gvrhd by l o c a l health area (lha) assume an i n c r e a s e i n the aging p o p u l a t i o n f o r vancouver lha i n years - as f o l l o w : f o r the t o t a l p o p u l a t i o n %, f o r aged and over %, and f o r aged and over % (gvrhd report, , appendix a, table ). these trends c r e a t e a demand f o r housing as w e l l as h e a l t h care s e r v i c e s f o r the e l d e r l y i n much g r e a t e r s c a l e than we have ever experienced. however, both u t i l i z a t i o n of s e r v i c e s (demand side) and p r o v i s i o n of s e r v i c e s (supply s i d e ) w i l l be i n f l u e n c e d by e v o l v i n g s o c i e t a l trends and p o l i c y d i r e c t i o n s . the g e n e r a l consensus suggests t h a t , o v e r a l l , f a c i l i t y care w i l l d e c l i n e , p a r t i c u l a r l y at the lower care l e v e l s , and demand f o r home support s e r v i c e s w i l l i n c r e a s e (gvrhd report, , p. ). p r o v i n c i a l l e v e l in b r i t i s h columbia, there i s evidence of t h i s t r e n d i n the d i f f e r e n t i a l r a t e of the growth of f a c i l i t y care and home based care. there i s a recommendation i n the p r o v i n c i a l government p o l i c y to reduce f a c i l i t y r e f e r r a l s f o r intermediate care l e v e l and l e v e l c l i e n t s to the g r e a t e s t extent p o s s i b l e . i t i s u n l i k e l y t h a t the i n c r e a s e d home support s e r v i c e s w i l l reduce the need f o r f a c i l i t y care at the extended care l e v e l or even the intermediate care l e v e l . however, the government w i l l not be funding the c o n s t r u c t i o n of long term f a c i l i t i e s a t c u r r e n t l e v e l s of usage (tate , p. ). the d i s p a r i t y between the supply and demand w i l l lead to an i n c r e a s i n g number of p r i v a t e market u n s u b s i d i z e d care f a c i l i t i e s ( r e t i r e m e n t or congregate housing, long term care f a c i l i t i e s p r i m a r i l y a t the lower care l e v e l s ) . at the same time when the government w i l l be c u t t i n g funding of long term f a c i l i t i e s , that are a c c e s s i b l e to a l l , the p r i v a t e market w i l l be p r o v i d i n g luxury u n i t s o n l y to those who can a f f o r d them. obviously, t h i s w i l l r e s u l t i n the c r e a t i o n of gaps i n the care system f o r the m a j o r i t y of the s e n i o r s popula- t i o n , with some e l d e r l y remaining at home beyond t h e i r a b i l i t y to maintain themselves with homecare. consequently, there s t i l l w i l l be a n e c e s s i t y f o r the e l d e r l y to move from one f a c i l i t y to another because of l a c k of a f u l l range of s e r v i c e s and expen- s i v e acute h o s p i t a l care w i l l continue to be a s u b s t i t u t e f o r intermediate and extended care. greater vancouver regional d i s t r i c t l e v e l the growing p o p u l a t i o n of o l d e r c i t i z e n s , e s p e c i a l l y the f a s t e s t growing segments of people aged to and o l d e r , increase the demand f o r f a c i l i t i e s f o r the e l d e r l y . other trends which may i n c r e a s e the demand f o r or u t i l i z a t i o n of s e r v i c e s i n c l u d e : . fewer f a m i l y c a r e - g i v e r s among f a m i l y members due t o : r i s i n g d i v o r c e r a t e s which r e s u l t i n fewer spousal c a r e - g i v e r s ; high m o b i l i t y which r e q u i r e s a d u l t c h i l d r e n to l i v e at some d i s t a n c e from t h e i r aging parents; i n c r e a s e d female p a r t i c i p a t i o n i n the workforce which l i m i t s the a b i l i t y of a d u l t daughters (the t r a d i t i o n a l c a r e - g i v e r s ) to care f o r t h e i r aging parents; . higher e x p e c t a t i o n of q u a n t i t y and q u a l i t y of s e r v i c e s : over time, the e l d e r l y w i l l be b e t t e r educated and b e t t e r i n - formed. consequently, they w i l l demand a d d i t i o n a l home sup- p o r t s e r v i c e s such as: home makers, a d u l t day care, r e s p i t e care, c a r e - g i v e r support. . expansion of the t r a d i t i o n a l c l i e n t group: the e l d e r l y and the young d i s a b l e d - the t r a d i t i o n a l c l i e n t groups w i l l be enlarged by aids p a t i e n t s by whom u t i l i z a t i o n of homemaker s e r v i c e s has been i n c r e a s i n g . however, there are other assumptions and trends t h a t may decrease the p r o v i s i o n of or u t i l i z a t i o n of s e r v i c e s : . lower tax revenues: f i s c a l r e s t r a i n t w i l l continue to squeeze resources f o r a l l s e r v i c e s i n the h e a l t h care s e c t o r (a d e c l i n e i n the percentage of the p o p u l a t i o n i n f a c i l i t i e s at the lower care l e v e l s without concurrent i n c r e a s e i n the number of homemaker hours). q u a l i t y of l i f e c o n s i d e r a t i o n s : c u r r e n t t h i n k i n g i s t h a t en- a b l i n g the e l d e r l y to remain i n t h e i r own home with support s e r v i c e s , r a t h e r than c a r i n g f o r them i n f a c i l i t i e s , i s b e n e f i c i a l i n terms of t h e i r h e a l t h and l i f e s a t i s f a c t i o n i n a d d i t i o n to the p e r c e i v e d economic b e n e f i t s . consequently, f a c i l i t y care w i l l be concentrated on very f r a i l e l d e r l y . i n c r e a s i n g emphasis on h e a l t h promotion and p r e v e n t i o n : g r e a t e r r e c o g n i t i o n by i n d i v i d u a l s , h e a l t h care p r o f e s s i o - n a l s , and governments of the importance of p s y c h o l o g i c a l and l i f e s t y l e f a c t o r s i n m a i n t a i n i n g good h e a l t h and i n c r e a s e d r e s e a r c h i n t o and r e g u l a t i o n of o c c u p a t i o n a l and e n v i r o n - mental c o n d i t i o n s w i l l help the e l d e r l y to l i v e longer, be more a c t i v e and a l e r t , and enjoy b e t t e r h e a l t h . i n c r e a s i n g economic independence f o r the e l d e r l y : while the e l d e r l y have t r a d i t i o n a l l y had r e l a t i v e l y low incomes, espe- c i a l l y women, there i s some evidence t h a t t h e i r economic s i t u a t i o n i s improving due to: removal of compulsory r e t i r e - ment i n many s e t t i n g s , government encouragement of p r i v a t e savings (rrsp), insurance and i n c r e a s i n g number of workers with pension p l a n s . the above simply p r o v i d e s another source of r e t i r e m e n t income. innovative housing o p t i o n s : the p r i v a t e s e c t o r i s responding to the growing e l d e r l y p o p u l a t i o n by s u p p l y i n g v a r i o u s forms of s u p p o r t i v e housing (meal s e r v i c e , caretaker/manager, alarm systems etc) which enable the e l d e r l y to avoid or delay f a c i l i t y care. a l l these trends are l i k e l y to i n f l u ence the p r o v i s i o n and u t i l i z a t i o n of s e r v i c e s (gvrhd report, , p. - ). the extended care subcommittee of gvrhd o u t l i n e d s e v e r a l recommendations. f i r s t , there w i l l be a major r e d u c t i o n i n f a c i l i t y r e f e r r a l s at the lower care l e v e l s (pc, ic and ic ). however, there w i l l be encouragement of " v a r i o u s forms of a p p r o p r i a t e l y designed, a f f o r d a b l e housing f o r the e l d e r l y i n the community". moreover, there w i l l be a major i n c r e a s e i n resources f o r home support s e r v i c e s and a c o n c u r r e n t i n c r e a s e i n a n c i l l a r y s e r v i c e s needed by the e l d e r l y i n the community, e.g. meals-on-wheels, a d u l t day care, r e s p i t e beds, r e h a b i l i t a t i o n s e r v i c e s . in a d d i t i o n , there w i l l be p r o v i s i o n i n f a c i l i t i e s f o r an a d d i t i o n a l intermediate care ( l e v e l ) and extended care c l i e n t s over the next f i f t e e n years. n e v e r t h e l e s s , there w i l l s t i l l be a shortage i n f a c i l i t i e s f o r the e l d e r l y e s p e c i a l l y at the higher l e v e l s of care. innova- t i v e housing o p t i o n s which were r e c e n t l y b u i l t e.g. congregate housing, a b b e y f i e l d model or m u l t i l e v e l f a c i l i t i e s ( p r a c t i c a l l y o n l y two l e v e l s of care) do not provide a l l kinds of s e r v i c e s needed by aged people. most of these new o p t i o n s are provided by the p r i v a t e s e c t o r which i s p r o f i t o r i e n t e d . t h e r e f o r e , there i s s t i l l a need f o r new, i n n o v a t i v e s o l u t i o n s which w i l l support a l l above mentioned recommendations of gvrhd and b r i d g e a gap between s e n i o r s ' housing and a h e a l t h care f a c i l i t y f o r the e l d e r l y . . . . findings and problem statement f i n d i n g s : the extended care subcommittee of gvrd has s p e c i f i c a l l y recommended and encouraged "various forms of a p p r o p r i a t e l y designed, a f f o r d a b l e housing f o r the e l d e r l y i n the community". t h i s i s one of most important aspects of the contemporary approach to e l d e r l y housing: s e n i o r s have to s t a y w i t h i n the same community they have been l i v i n g i n . t h e r e f o r e , the same subcommittee f u r t h e r recommends an i n c r e a s e i n resources f o r home support s e r v i c e s , meals-on wheels, a d u l t day c a r e , r e s p i t e beds, r e h a b i l i t a t i o n s e r v i c e s and o t h e r s . problem statement: both the p r o v i n c i a l government and gvrd p r e d i c t t h a t they w i l l not be funding the c o n s t r u c t i o n of long term care f a c i l i - t i e s at c u r r e n t l e v e l s of usage. there w i l l be a d i s p a r i t y between the a c t u a l supply and demand. t h i s w i l l r e s u l t i n the c r e a t i o n of gaps i n the care system f o r the m a j o r i t y of s e n i o r s , e s p e c i a l l y those who can't a f f o r d r e t i r e m e n t or congregate housing provided by the p r i v a t e market. so, i t w i l l be necessary f o r the e l d e r l y to move from one f a c i l i t y to another because of l a c k of a f u l l range of s e r v i c e s . t h i s c r e a t e s a problem which has to be addressed. summary: the s i t u a t i o n i s c l e a r : both, the p r o v i n c i a l government and gvrd (they both share expenditure f o r e l d e r l y housing) are l o o k i n g f o r i n n o v a t i v e options and design s o l u t i o n s which could meet needs and e x p e c t a t i o n s of a new wave of s e n i o r s a t the end of t h i s century. . . the continuum of care complex in point grey as one of the options and innovative approaches to solve the elderly housing problem. the proposed continuum of care complex i n p o i n t grey has one major g o a l : to c r e a t e a comprehensive f a c i l i t y f o r the e l d e r l y t h a t p r o v i d e s a l l l e v e l s of care with a wide range of s e r v i c e s t h a t meet a v a r i e t y of r e s i d e n t s ' needs. in the ccc the housing a l t e r n a t i v e s f o r the e l d e r l y w i l l range from independent l i v i n g u n i t s and supported independent l i v i n g u n i t s to dependent l i v i n g u n i t s . there are i n d i c a t i o n s ( c l u f f ), t h a t a continuum of care f a c i l i t y may reduce the c a p i t a l and o p e r a t i n g c o s t s of s e r v i c e s and at the same time i n c r e a s e the q u a l i t y of care as w e l l as q u a l i t y of l i f e f o r the e l d e r l y . however, t h i s t h e s i s w i l l not evaluate the c a p i t a l and o p e r a t i n g c o s t s . these i s s u e s would r e q u i r e separate s t u d i e s and they are not the s u b j e c t of t h i s t h e s i s . moreover, f i n a n c i a l s e c u r i t y of the r e s i d e n t s may be an a d d i t i o n a l advantage of a ccc because there c o u l d be a s t a b l e r e n t payment arrangement c o n t r o l l e d by government agen- c i e s (bcmhc, cmhc, gvrhd, moh). the ccc f a c i l i t y i s assumed to be a c c e s s i b l e f o r a l l , even f o r those with very l i m i t e d income. the proposed cc complex w i l l have a more comprehensive program which w i l l provide p e r s o n a l , s o c i a l and h e a l t h care s e r v i c e s not o n l y f o r r e s i d e n t s but a l s o f o r the e n t i r e p o i n t grey community. by p r o v i d i n g a f u n c t i o n a l , a t t r a c t i v e and comfor- t a b l e environment f o r the r e s i d e n t s and v i s i t o r s , and by i n v o l v - i n g the e l d e r l y i n i t s management, the ccc may c r e a t e a s t r o n g l i n k between the ccc 'community' and the o u t s i d e neighbourhood. . . rationale of the thesis t h i s t h e s i s accepts the h y p o t h e s i s , t h a t m u l t i - l e v e l care i s a v i a b l e way of a c h i e v i n g an environment which may f u l f i l l a comprehensive a r r a y of needs of the e l d e r l y . the f a c i l i t y program study of t h i s t h e s i s expands t h a t b a s i c hypothesis arguing, t h a t a ccc should i n c l u d e housing a l t e r n a t i v e s f o r the e l d e r l y both i n terms of tenure and s u p p o r t i n g s e r v i c e s , but above a l l should provide a s p e c i f i c ambiance equal to a home- l i k e environment. the t h e s i s goes on to demonstrate how such a f a c i l i t y may be organized. examples of p a r t i a l m u l t i - l e v e l care are common i n the usa i n r e t i r e m e n t v i l l a g e s . t h i s t h e s i s w i l l attempt to achieve some of those amenities on an urban s i t e . chapter - supply and demand: analysis of the elderly housing options and services in vancouver and west point grey area. chapter summary: chapter c o n c e n t r a t e s on the a n a l y s i s of the contemporary e l d e r l y : t h e i r means, e x p e c t a t i o n s and s o c i a l p r o f i l e . f i n d i n g s have been presented i n the form of the c h a r a c t e r i s t i c f e a t u r e s of the f u t u r e c l i e n t s of the continuum of care complex and a l s o i n c o n c l u s i o n s to be implemented i n the f a c i l i t y program. the e l d e r l y p o p u l a t i o n i n vancouver i n g e n e r a l and i n p o i n t grey i n p a r t i c u l a r has been analysed, based on census data, i n terms of f a m i l y households, home ownership and d w e l l i n g c h a r a c t e r i s t i c s . senior housing r e s o u r c e s , d w e l l i n g u n i t s , long-term care beds and s e n i o r c e n t r e s i n vancouver's west side serve as a r e s e a r c h background f o r t h i s chapter's o b j e c t i v e : to i n v e s t i g a t e the need f o r e s t a b l i s h m e n t of a ccc i n p o i n t grey i n terms of i t s f u t u r e r e s i d e n t s , l o c a t i o n and unique environment. . . the contemporary elderly: their means and expectations. . . . current trends. as harlow unger noted i n h i s s t a t e s i d e - column: u n i v e r s i t y towns show b u i l d i n g boom (canadian b u i l d i n g , ); the b i g g e s t s u r p r i s e a f t e r the october stock market c r a s h and subse- quent d e c l i n e i n housing s t a r t s , was the f a c t t h a t the united states c o l l e g e towns have been e x p e r i e n c i n g an unprecedented housing c o n s t r u c t i o n boom. the cause of the boom was the exploding p o p u l a t i o n of american r e t i r e e s . now, they no longer move to the t r a d i t i o n a l retirement v i l l a g e s i n the u.s. south and southwest, but i n s t e a d f a v o r the a c t i v e c u l t u r a l environment of c o l l e g e and u n i v e r s i t y communities. who are those r e t i r e e s ? f i r s t , they tend to be w e a l t h i e r , more cosmopolitan r e t i r e e s who have found t h e i r e x i s t i n g suburban communities too s t e r i l e and nearby c i t i e s too c o s t l y . what are they l o o k i n g f o r ? t h e i r e x p e c t a t i o n s can e a s i l y be s a t i s f i e d i n c o l l e g e and u n i v e r s i t y towns which o f f e r a l l the c u l t u r a l advantages of major c i t i e s - c o n c e r t s , opera, t h e a t r e , l e c t u r e s , museums, a d u l t education as w e l l as safe (low crime) environment. vancouver's safe environment, i t s s c e n i c c o a s t a l and moun- t a i n beauty, i t s temperate c l i m a t e , i t s impressive c u l t u r a l , academic (the u n i v e r s i t y of b r i t i s h columbia and simon f r a s e r u n i v e r s i t y ) and r e c r e a t i o n a l advantages and i t s commercial and business importance, continue to a t t r a c t more and more people, i n c l u d i n g s e n i o r c i t i z e n s , from a l l over canada and the united s t a t e s . with steady p o p u l a t i o n growth p r o j e c t e d to continue, p a r t i - c u l a r l y the p o p u l a t i o n age + may i n c r e a s e by about % between the years - (gvrhd report, ), the p r e s s u r e s on hous- i n g supply w i l l grow. low vacancy r a t e s i n r e n t a l accommodation and at the same time e s c a l a t i n g r e s a l e p r i c e s f o r homes c a l l f o r new, i n n o v a t i v e s o l u t i o n s and housing o p t i o n s s p e c i a l l y f o r the e l d e r l y p o p u l a t i o n . in summary, the "new" emerging group of the e l d e r l y people, who w i l l dominate the housing scene i n the next few decades can be d e s c r i b e d as f o l l o w s : - o l d e r people who value independence more than anything e l s e - they want to stay out of i n s t i t u t i o n s - they don't want to l i v e with t h e i r c h i l d r e n - they p r e f e r to l i v e alone i n more s t i m u l a t i n g communities - they tend to be w e a l t h i e r and more cosmopolitan . . feature characteristics of senior citizens - the future clients of the continuum of care complex ( c c c ) feature # : housing and income l e v e l s : m a j o r i t y of s e n i o r c i t i z e n s i n canada i n g e n e r a l and i n b r i t i s h columbia i n p a r t i c u l a r own t h e i r homes (see appx.# - ). the f i r s t group of more a f f l u e n t s e n i o r homeowners may be w i l l i n g to move to new housing, i f such housing responds to t h e i r s p e c i f i c needs. the most a t t r a c t i v e tenure type w i l l be a s t r a t a t i t l e condominium, where they can i n v e s t a p o r t i o n of any e q u i t y recovered from s e l l i n g t h e i r present home. the second group of s e n i o r s i s made up of those "go-go" r e l a - t i v e l y h e a l t h y i n d i v i d u a l s who are not as w e l l o f f as the p r e v i - ous group, but are a c t i v e , w i l l i n g to p a r t i c i p a t e and e s t a b l i s h c o - o p e r a t i v e housing, based on the cmhc a s s i s t a n c e programs. the t h i r d group w i l l be made up of s e n i o r s l i v i n g on a f i x e d income, with no f i n a n c i a l resources, who badly need s o c i a l a s s i s t a n c e . the best form of housing f o r t h i s group, would be the bchmc programs. the f o u r t h group w i l l be those, who need long term care on a continuous b a s i s , and q u a l i f y f o r f a c i l i t y - b a s e d care f i n a n c e d by the p r o v i n c i a l m i n i s t r y of health. c o n c l u s i o n # : the ccc should provide a v a r i e t y of housing tenures f o r i t s f u t u r e c l i e n t s . feature # : family and s o c i a l status the e l d e r l y p o p u l a t i o n i s extremely d i v e r s i f i e d i n terms of f a m i l y s t a t u s , household arrangements and s o c i a l s t a t u s : e l d e r l y couples, those l i v i n g with f a m i l i e s or f r i e n d s , unattached ( l i v i n g alone) i n d i v i d u a l s , more a c t i v e and "no-go's", h e a l t h y and wheelchair handicapped and so on. c o n c l u s i o n # : the ccc should c r e a t e a p h y s i c a l and s o c i a l environment responding to the needs of a broad spectrum of the e l d e r l y p o p u l a t i o n . feature # : health care needs. access to and q u a l i t y of h e a l t h care s e r v i c e s are major elements c o n t r i b u t i n g to the w e l l - b e i n g of most s e n i o r c i t i z e n s . case study a n a l y s i s (see appx.# - ) i n d i c a t e s the whole complex framework of the e x i s t i n g a v a i l a b l e s e r v i c e s i n terms of: g e n e r a l medicine (doctors; c l i n i c s ) r e h a b i l i t a t i o n ( p h y s i c a l , mental) p e r s o n a l care: home care and home support s e r v i c e s long term-care: intermediate and extended care r e s p i t e care day care s h o r t stay assessment and treatment pharmacy as the c i t y of vancouver grows i n terms of the economic resour- ces and p o p u l a t i o n , i t w i l l face t r a f f i c c o n g e s t i o n and commu- n i c a t i o n problems as any other m e t r o p o l i t a n area. t h i s of course may a f f e c t s e n i o r s ' easy access to h e a l t h care s e r v i c e s , now s c a t t e r e d a l l over the c i t y . conclusion # : the ccc should provide a l l l e v e l s of h e a l t h care s e r v i c e s (except acute care) i n one p l a c e . feature # : l i f e s t y l e and e x p e c t a t i o n s contemporary s e n i o r s expect more than t h e i r predecessors i n terms of q u a l i t y l i f e s t y l e . they are more educated, h e a l t h y and more s o p h i s t i c a t e d i n t h e i r e x p e c t a t i o n s . they are l o o k i n g f o r an a t t r a c t i v e , n a t u r a l environment, yet c l o s e to the c u l t u r a l c e n t r e s of m e t r o p o l i t a n l i f e where they can enjoy: s p o r t and r e c r e a t i o n secure environment l e i s u r e and r e t r e a t c u l t u r a l a c t i v i t i e s companionship c o n c l u s i o n # : the ccc should take advantage of the n a t u r a l beauty of the bc environment and be l o c a t e d c l o s e to the u n i v e r s i t y , r e c r e a t i o n a l and c u l t u r a l centres and major shopping area. feature # : s e n i o r s everywhere. the growing p o p u l a t i o n of s e n i o r c i t i z e n s i n any community across canada t o g e t h e r with the market f o r c e s i n the housing i n d u s t r y , c a l l f o r a general r a t h e r than a s p e c i f i c l o c a l approach to s e n i o r s ' housing problems. any c o n s i d e r a t i o n f o r a new f a c i l i t y or housing p r o j e c t , should take i n t o account the catchment area f a r beyond the a c t u a l community. c o n c l u s i o n # : the ccc s h a l l be a d e s t i n a t i o n f o r the l o c a l r e s i d e n t s and a l s o f o r those from m e t r o p o l i t a n vancouver and canada. feature # : f l e x i b i l i t y and c o n t i n u i t y . the only constant and c e r t a i n c h a r a c t e r i s t i c of a l l the e l d e r l y i s t h a t they change c o n t i n u o u s l y . because of t h i s phenomenon, the p h y s i c a l and s o c i a l environment they are suppose to l i v e i n must be f l e x i b l e . c o n c l u s i o n # : the ccc should c r e a t e an environment, which should provide f o r : a. f l e x i b i l i t y i n housing options i n terms of: . form of tenure . types of d w e l l i n g u n i t s . a c c e s s i b i l i t y f o r the p h y s i c a l l y handicapped. b. c o n t i n u i t y i n h e a l t h care s e r v i c e s p r o v i d e d i n only one p l a c e : . from independent l i v i n g . to long term care. . the elderly in vancouver . . elderly population: the people and their houses. in the number of people years o l d and over i n the c i t y i n c r e a s e d from i n to , and composed per- cent of the p o p u l a t i o n and per cent of the households. about , of the e l d e r l y are l i v i n g i n the west side of the c i t y . h a l f of the e l d e r l y r e n t and h a l f own t h e i r homes. the e l d e r l y are the l e a s t mobile of the c i t y ' s households. most have l i v e d i n t h e i r present homes f o r at l e a s t f i v e years, but . per cent have l i v e d there f o r ten years and over (mcafee, donegani ). in the t r a d i t i o n a l two-parent f a m i l y with c h i l d r e n occupied only i n homes. an equal share of homeowners were aged or o l d e r . by the year , the e l d e r l y c o u l d occupy i n s i n g l e f a m i l y houses. the vancouver planning department r e p o r t s : there i s a grow- i n g number of s i n g l e f a m i l y households with members age and over. in , there were , s e n i o r s households ( per cent of a l l households, see f i g . - ). the vancouver planning department p r o j e c t i o n s f o r the same area i n i s about , s i n g l e f a m i l y households with member age + (see f i g . - ). p o t e n t i a l movers to a l t e r n a t i v e housing w i l l be between % minimum and % maximum (the vancouver p l a n n i n g department data). p r o j e c t i o n s f o r year assume , s i n g l e f a m i l y house-holds with member age + (see f i g . - ). i n these census t r a c t s f i g . - - s i n g l e family households with member aged + source: c i t y of vancouver p l a n n i n g department o based on c e n s u s t o t a l - , h o u s e h o l d s i n t h e s e census t r a c t s f i g . - - s i n g l e family households with member aged + source: c i t y of vancouver p l a n n i n g department total =~ ,boo ( % of a l l h o u s e h o l d s ) potential movers = % (minimum) - * imaximum) number = * of s i n g l e f a m i l y households w i t h member age + mini mum [households - mov i ng based on b census max imum \ dusehoids \ moving i total - , h o u s e h o l d s i n t h e s e c e n s u s t r a c t s f i g . - - s i n g l e family households with member aged + source: c i t y of vancouver p l a n n i n g department table - . - - p r o j e c t i o n s of the e l d e r l y homeowners and the p o t e n t i a l movers i n vancouver: ( census) year households elderly household potential movers total % | total min | max comparison % % base , , , , , , , , , , , , . . seniors' reluctance to move versus attractiveness of a new place. the c i t y ' s p l a n n i n g department ( d r a f t ) has concluded t h a t the e l d e r l y do not choose to move because of p r e f e r e n c e s which stem from emotional attachment to t h e i r homes or neighbour- hoods : f a m i l i a r i t y with the environment l o c a t i o n of c h i l d r e n and f a m i l y f e a r of debt change i n g e n e r a l crime memories of younger years l e n g t h of term of r e s i d e n c e the l a c k of v i a b l e a l t e r n a t e housing the planning department c l a i m s , t h a t d e c l i n i n g h e a l t h does e v e n t u a l l y f o r c e % of e l d e r l y homeowners to move from t h e i r f a m i l y home i n t o long-term care. another % s e l l and move from t h e i r s i n g l e - f a m i l y home to s m a l l e r , s e l f - c o n t a i n e d d w e l l i n g . there are c h a r a c t e r i s i t i c s , which ( i n theory) might encourage the e l d e r l y to move from l a r g e r to s m a l l e r housing: t h e i r houses are o f t e n l a r g e r than r e q u i r e d the aging process c r e a t e s p h y s i c a l l i m i t a t i o n s , which i n c r e a s e the d i f f i c u l t y of m a i n t a i n i n g a house and garden, aging i n c r e a s e s the l i k e l i h o o d of i l l n e s s or death of a spouse, which may r e s u l t i n the s u r v i v i n g p a r t n e r seeking a l t e r n a t e housing. most e l d e r l y homeowners own t h e i r home o u t r i g h t ( e q u i t y ) ; a s u b s t a n t i a l a s s e t should they choose to s e l l . s e v e r a l s t u d i e s have found (mcafee, donegani ) t h a t % of today's e l d e r l y homeowners would c o n s i d e r moving i f : . they could f i n d the type of home they want. . at a p r i c e they c o u l d a f f o r d . . in the l o c a t i o n of t h e i r c h o i c e . l o c a t i o n , however, becomes of paramount importance i n any d e c i s i o n to move. in general terms, l o c a t i o n s p r e f e r r e d , by the e l d e r l y would be (mcafee, donegani ): i n t h e i r own neighbourhood w i t h i n walking d i s t a n c e of s e r v i c e s , f a m i l i e s and f r i e n d s near p u b l i c t r a n s p o r t a t i o n near c o n c e n t r a t i o n s of e l d e r l y people not too c l o s e to c o n c e n t r a t i o n s of c h i l d r e n . . . . the city's housing policies and market forces. "the goals f o r vancouver" a major p o l i c y g u i d e l i n e document recommended t h a t housing f o r the e l d e r l y i n t h e i r t r a d i t i o n a l neighbourhoods be encouraged and t h a t o p p o r t u n i t i e s f o r f a m i l i e s to l i v e i n the c i t y be expanded. obviously, there i s a l i n k between these two g o a l s . i t i s a known f a c t t h a t there are l i m i t s to the c i t y ' s e x i s t i n g housing stock and i t s scarce supply of land. family housing r e q u i r e s l a r g e ground o r i e n t e d u n i t s . however, a l t e r n a t i v e housing f o r the e l d e r l y can be b u i l t at higher d e n s i t y , t h e r e f o r e can help the e l d e r l y remain independent f o r a longer p e r i o d . the key i s s u e to meet these two o b j e c t i v e s i s the zoning by-law. the c i t y c o u l d a s s i s t those who wish to r e l o c a t e near t h e i r present home, by ensuring t h a t zoning allows some choice of housing type. a c t u a l l y , the c i t y can only zone land to permit develop- ment. from t h a t p o i n t , the p r o v i s i o n of new housing depends upon market f o r c e s = the demand of the e l d e r l y who are prepared to move and a supply of a p p r o p r i a t e u n i t s b u i l t by developers. the vancouver planning department's p r o j e c t i o n s of new s e n i o r s housing needed by to accommodate e l d e r l y homeowners alone amount to , u n i t s to meet the needs of aging homeowners (see f i g . - ). . the elderly in point grey . . vancouver west side: trends and preferences. demographic s t u d i e s i n vancouver's west side ( r e b a l s k i ) \ - - . — i total , units f i g . - source: p r o j e c t i o n of s e n i o r housing needed by to accomodate e l d e r l y homeowners c i t y of vancouver p l a n n i n g department show a need f o r more s e n i o r s housing f o r those who otherwise might f e e l f o r c e d to leave the neighbourhood to f i n d a p p r o p r i a t e accommodation. current ( ) estimates of the c i t y ' s planning department i n d i c a t e as many as , vancouver s e n i o r s who p r e s e n t l y own t h e i r own detached houses might be i n t e r e s t e d i n moving to other forms of housing i f i t was a v a i l a b l e . according to the recent survey of housing p r e f e r e n c e s of west side r e s i d e n t s c a r r i e d out by michael g e l l e r & a s s o c i a t e s l t d . "is your house g e t t i n g too big?" ( ), % of those who responded were years of age or over. while the p r e f e r r e d b u i l d i n g type was townhouses, there was i n t e r e s t i n l o w r i s e a- partments as w e l l as apartments s t o r e y s and over. respondents were l o o k i n g f o r apartment b u i l d i n g s with s e r v i c e s i n c l u d i n g communal d i n i n g f a c i l i t i e s . there were two p r e f e r a b l e l o c a t i o n s : one near th and tolmie and the second near th and alma, which was chosen p a r t i c u l a r l y by those years o l d and over. . . . the e l d e r l y i n west p o i n t grey area p a r t i c u l a r l y , i n west p o i n t grey area, the e l d e r l y compose . per cent of the t o t a l p o p u l a t i o n of , . e l d e r l y men form . per cent and women . per cent. however, the p o p u l a t i o n i n t h e i r f i f t i e s and e a r l y s i x t i e s i s r e l a t i v e l y higher, . % and . % r e s p e c t i v e l y . t h e r e f o r e , we can assume t h a t the number of the e l d e r l y i n west p o i n t grey area w i l l i n c r e a s e . . . . d w e l l i n g c h a r a c t e r i s t i c s there are , p r i v a t e d w e l l i n g s i n west p o i n t grey area with owned ( . %) and ( %) rented (census ). we can assume t h a t the o l d e r people l i v i n g i n the rented d w e l l i n g s w i l l be i n the f u t u r e p o t e n t i a l a p p l i c a n t s f o r a l t e r n a t i v e housing or f a c i l i t y f o r the e l d e r l y . . . . household c h a r a c t e r i s t i c s in west p o i n t grey persons years o l d and over l i v e i n p r i v a t e households, % of them i s l i v e alone. . . . census family c h a r a c t e r i s t i c s the f a m i l y p r o f i l e i n west p o i n t grey area composes of % of f a m i l i e s without any c h i l d r e n or c h i l d r e n no longer at home. t h i s group i s a t high r i s k of going to a n u r s i n g home i f they become i l l . t h e r e f o r e , we can assume t h a t a s i g n i f i c a n t number of the e l d e r l y would seek another l i v i n g arrangement with more s e c u r i t y i n terms of h e a l t h care due to l a c k of f a m i l y s u p e r v i s i o n . . . the exisiting senior housing in point grey in vancouver, i n g e n e r a l , there are l i m i t e d c h o i c e s f o r e l d e r l y s i n g l e f a m i l y homeowners who wish to move to other housing i n t h e i r neighbourhood. p a r t i c u l a r l y , the west p o i n t grey area i s b u i l t to c a p a c i t y . there i s o n l y one s e n i o r s s o c i a l housing p r o j e c t , steeves manor, on wallace s t r e e t . t h i s p r o j e c t comprises d w e l l i n g u n i t s . next to the t h e s i s s u b j e c t s i t e on west th avenue, there i s under c o n s t r u c t i o n a s t o r e y r e s i d e n t i a l b u i l d i n g with s e l f - c o n t a i n e d d w e l l i n g u n i t s , which are s e n i o r s o r i e n t e d . in a d d i t i o n , there are two condominuum developments under c o n s t r u c t i o n : "mayfair house" with u n i t s (one and two bedroom) and the "cumberland" with one bedroom u n i t s . . . the existing long term care facilities in the west p o i n t grey area (with persons years o l d and over) as w e l l as i n the adjacent areas of k i t s i l a n o and dunbar-southlands, there are only nine long term care f a c i l i - t i e s , with a t o t a l of beds. there are beds at the e.c. l e v e l , beds at i.c. and beds at p.c. (vancouver health department). although the p r o v i n c i a l m i n i s t r y of health's con- t i n u i n g care program arranges f o r treatment and support s e r v i c e s f o r i n d i v i d u a l s who can not f u n c t i o n independently i n homes among t h e i r f a m i l i e s , due to h e a l t h r e l a t e d problems, there i s s t i l l a need f o r a long term care f a c i l i t y e s p e c i a l l y at the intermediate care l e v e l . . . a need for long term care facilities according to vancouver health department data there are , c l i e n t s i n vancouver r e c e i v i n g long term care s e r v i c e s (see f i g . - ): however, there i s s t i l l a s i g n i f i c a n t number of c l i e n t s (see f i g . - ) who are w a i t l i s t e d f o r a long term care placement (annual report ). the growing p o p u l a t i o n of t h i s area may c r e a t e a new problem with the supply of necessary h e a l t h care s e r v i c e s such as intermediate care, extended care, c l i n i c f o r the e l d e r l y , respite care, day/night care or care f o r the s e n i o r s when t h e i r f a m i l i e s are on v a c a t i o n s . f i g . - number of c l i e n t s r e c e i v i n g long term care home support or f a c i l i t y s e r v i c e s by l e v e l of care (december ) int.l: ( x) f i g . - number of c l i e n t s w a i t l i s t e d f o r long term care placement by l e v e l of care (december, ) source: vancouver health department, c o n t i n u i n g care d i v i s i o n , annual report, . . . a need for senior centre there i s a need f o r a b i g g e r a c t i v i t y c e n t r e f o r s e n i o r s i n t h i s area. the e x i s t i n g brock house - s e n i o r s a c t i v i t y centre on j e r i c h o beach although p r o v i d i n g a v a r i e t y of c u l t u r a l , educa- t i o n a l and s o c i a l programs, i s simply too s m a l l . brock house i s a h e r i t a g e b u i l d i n g , which belongs to the c i t y of vancouver and has been l e a s e d to the brock house s o c i e t y , a n o n - p r o f i t o r g a n i - z a t i o n , which a d m i n i s t e r s the a c t i v i t y centre f o r s e n i o r c i t i - zens. s i t u a t e d on two and one h a l f acres of w a t e r f r o n t proper- t y , room brock house i s i n s u f f i c i e n t f o r members and can not accomodate a l l d e s i r e d programs and a c t i v i t i e s . there are apparent needs f o r adequate room to accommodate members f o r a wide range of a c t i v i t i e s : c h o i r , o r c h e s t r a , c o n c e r t s , popular l e c t u r e s , s o c i a l events, dances, b r i d g e tournaments, f i t n e s s c l a s s e s , workshops and r e c r e a t i o n a l a c t i v i t i e s . in september a q u e s t i o n n a i r e on the annex concept was sent to a l l members. a t o t a l of r e p l i e s to the q u e s t i o n n a i r e supported the major a d d i t i o n p r o j e c t . the survey documented t h a t there i s a urgent need f o r a s e n i o r c i t i z e n centre with a more comprehensive program and a wider range of amenities than are provided by brock house at the present time. . . point grey: destination for the elderly i have s e l e c t e d the p o i n t grey area as a background f o r my research t h e s i s , because i n general terms, i t o f f e r s a unique environment: f i r s t l y : f o r the s e n i o r c i t i z e n s l i v i n g i n p o i n t grey at the present moment and who want to stay there. secondly: f o r those l i v i n g i n adjacent k i t s i l a n o , dunbar and k e r r i s d a l e areas, who want to move to f a m i l i a r neighbourhood. t h i r d l y ; f o r those l i v i n g i n m e t r o p o l i t a n vancouver and the lower mainland who would l i k e to move there i f p o s s i b l e , and f i n a l l y : f o r a l l those s e n i o r s from a l l over canada and u.s.a. who are p l a n n i n g to come here, because of these primary reasons: n a t u r a l beauty of bc, i t s m i l d c l i m a t e and e x c e l l e n t l e v e l of h e a l t h care s e r v i c e s . the proposed continuum of care complex i n west p o i n t grey area could be one of the options f o r the b a s i c three groups of e l d e r l y : . "empty n e s t e r s " , the e l d e r l y and p r e - e l d e r l y i n s i n g l e f a m i l y houses -- these people s e l l an expensive house to get a s m a l l e r one, or a townhouse, f o r convenience and lower p r i c e . they may be l a s t time buyers t h i n k i n g about aging i n t h a t u n i t . . " r e n t e r s " , the e l d e r l y l i v i n g i n rented d w e l l i n g s - u s u a l l y the e l d e r l y with a low income, i n t e r e s t e d i n a f f o r d a b l e housing with high l e v e l of amenities and s e c u r i t y . . " a l o n e r s " , the e l d e r l y l i v i n g alone without f a m i l i e s - mostly women. those people w i l l look f o r s e c u r i t y both i n terms of p h y s i c a l l y secure environment and h e a l t h care s e r v i c e s , t r o u b l e f r e e maintenance and companionship. . the site of the continuum of care complex at th ave & highbury street i have s e l e c t e d f o r my t h e s i s the f e d e r a l n a t i o n a l defence lands s i t e f o r the proposed development, because there i s an e x e l l e n t access to s e r v i c e s , a c t i v i t i e s , p u b l i c t r a n s p o r t a t i o n and the u n i v e r i s i t y of b r i t i s h columbia. the s i t e i s l o c a t e d i n the core of one of vancouver's d e s i r a b l e r e s i d e n t i a l areas. i t i s c l o s e to j e r i c h o beach and has neighbourhoods with w e l l - l o v e d atmosphere of s t a b i l i t y and t r a d i t i o n . although there has been c o n s i d e r a b l e d i s c u s s i o n on a need to preserve vancouver's s i n g l e f a m i l y neighbourhoods, there i s a l s o a growing need f o r new forms of housing on the west side of vancouver. the s u b j e c t s i t e could make an e x c e l l e n t p l a c e f o r the ccc development. the l o c a t i o n and v a r i e t y of s e r v i c e s provided by the continuum of care complex and easy access to community r e s o u r c e s c o u l d a t t r a c t s e n i o r s not o n l y from the west p o i n t grey area, but a l s o from vancouver, the province of bc and a l l of canada. chapter - the ccc facility objectives chapter summary; chapter concludes the t h e s i s a n a l y s i s c y c l e and develops the major o b j e c t i v e s f o r the f a c i l i t y program. i t c o n s i s t s of f i v e s e c t i o n s , each d e d i c a t e d to a separate important i s s u e . these i s s u e s are: l i v i n g environment, r e s i d e n t s , management, community and neighbourhood development. introduction the continuum of care complex c o n s i s t s of independent s e n i o r s ' housing, r e s i d e n t i a l h e a l t h care f a c i l i t i e s and s e n i o r community s e r v i c e s . the complex w i l l provide on s i t e p e r s o n a l , s o c i a l , and h e a l t h care s e r v i c e s to i t s r e s i d e n t s . since the e l d e r l y r e p r e s e n t a great d i v e r s i t y of p h y s i c a l and mental a b i l i t i e s , l i f e - s t y l e s and p r e f e r e n c e s , d e s i g n i n g f o r them r e q u i r e s s p e c i a l knowledge about the aging process and how t h i s process a f f e c t s t h e i r way of r e a d i n g , i n t e r p r e t i n g or even imaginating t h e i r environment. in g e n e r a l , the aging process i s a s s o c i a t e d with s e v e r a l changes. these changes may be understood as a slow process of l o s s e s such as c h i l d r e n l e a v i n g home, death of spouse or f r i e n d s , l o s s of income, l o s s of sensory a c u i t y , d e t e r i o r a t i n g h e a l t h and diminished independence. t h i s process r e s u l t s i n an i n c r e a s e i n the e l d e r l y ' l e v e l of dependence and a decrease of t h e i r l e v e l of competence. in "environment and aging" m. powell lawton d i s c u s s e s the i s s u e of the i n t e r a c t i o n between man and environment. he s t a t e s t h a t : the l e s s competent the i n d i v i d u a l , the g r e a t e r the impact of environmental f a c t o r s on t h a t i n d i v i d u a l (lawton , p. ). a person with average competence can d e a l with p h y s i c a l s e t t i n g s through adaptive behavior. although the aged f o r the most p a r t of t h e i r l i v e s are c h a r a c t e r i z e d by independence and competent behavior, they are v u l n e r a b l e ( e s p e c i a l y the " o l d - o l d " segment - years of age and more) to h e a l t h changes and s o c i a l d e p r i v a t i o n s which may lead to r e d u c t i o n s i n competence. lawton suggest t h a t : ... i f we c o u l d design housing with fewer b a r r i e r s , neighborhoods with more e n r i c h i n g r e s o u r c e s , or i n s t i t u t i o n s with higher s t i m u l a t i n g q u a l i t i e s , we c o u l d improve the l e v e l of f u n c t i o n i n g of many o l d e r people more than p r o p o r t i o n a t e l y (lawton , p. ). he l a t e r concludes t h a t by r e c o g n i z i n g the e l d e r l y persons unique needs we can c r e a t e f o r them a more f a v o r a b l e environment and e l e v a t e t h e i r behavior. . . living environment objectives (l.e.o.) in order to s a t i s f y the e l d e r l y ' s unique needs a number of o v e r a l l o b j e c t i v e s have to be p o i n t e d out. these o b j e c t i v e s recognize the s p e c i a l c h a r a c t e r i s t i c s of the e l d e r l y which a f f e c t the design of the continuum of care complex. l.e.o. # to c r e a t e a q u a l i t y environment which w i l l : ) i n c r e a s e o p p o r t u n i t i e s f o r i n d i v i d u a l choice i n the ccc p h y s i c a l s e t t i n g ; r a t i o n a l e : the i n d i v i d u a l ' s l i f e s t y l e i n o l d e r age i s a f f e c t e d by a r e d u c t i o n of the number of options open to him. to respond to the p r e f e r e n c e s and a b i l i t i e s among the e l d e r l y v a r i e t y and choice must be o f f e r e d . "where environmental c h o i c e s are a v a i l - a b l e , o l d e r people g e n e r a l l y tend to choose those t h a t match t h e i r a b i l i t y l e v e l " ( c a r s t e n s ). the ccc environment should permit the widest range of p e r s o n a l c h o i c e s by p r o v i d i n g : a v a r i e t y of l i v i n g arrangements (one bedroom u n i t s , two bedroom u n i t s , townhouse, m u l t i p l e d w e l l i n g u n i t s ) a v a r i e t y of amenities and s e r v i c e s (a wide range of s o c i a l , p e r s o n a l and h e a l t h care s e r v i c e s ) a v a r i e t y of outdoor areas ( f o r m a l , i n f o r m a l , c h o i c e s i n s c a l e and spaces) a v a r i e t y of common spaces ( s o c i a l i n t e r a c t i o n vs intimacy) a v a r i e t y of tenure ) minimize dependence and i n s t e a d encourage p e r s o n a l inde- pendence i n use of the ccc f a c i l i t y ; r a t i o n a l e : "the d e s i r e to be independent of o t h e r s i s p a r t i - c u l a r l y s t r o n g among the e l d e r l y . the a b i l i t y to do f o r o n e s e l f c a r r i e s a sense of p r i d e and i n c r e a s e s s e l f - e s t e e m " (jordan , p. ) p h y s i c a l support f e a t u r e s (as w e l l as management) i n the ccc should be unobtrusive i n order to reduce f e e l i n g of dependency. for example, the design of the p a r k i n g area ( % wider parking spaces or s p e c i a l l y marked spaces f o r handicapp- ed), walks, ramps, l i v i n g u n i t s , a l l f a c i l i t i e s i n the core centre should permit use by the handicapped or l e s s mobile e l d e r l y without the a s s i s t a n c e of o t h e r s . ) r e i n f o r c e the i n d i v i d u a l s ' l e v e l of competency by p r o v i d i n g environmental support; r a t i o n a l e ; environmental support w i t h i n the ccc f a c i l i t y should help the l e s s able to f u n c t i o n at higher l e v e l of competence. in g e n e r a l , more space "around", whether i t w i l l be i n the d w e l l i n g u n i t or i n the common space w i l l help o l d e r people to f u n c t i o n at a higher l e v e l of competence. some environmental supports may r e i n f o r c e the i n d i v i d u a l s l e v e l of competency and improve q u a l i - t y of l i f e . for example, wide stairways with g e n t l e r i s e r s and frequent l a n d i n g s w i l l be e a s i e r f o r o l d e r people to use, as w e l l as, wider spacing of rows of auditorium s e a t s , and p r o v i d - ing easy use f u r n i t u r e . ) compensate f o r sensory and p e r c e p t u a l changes; r a t i o n a l e ; the aging process b r i n g s sensory changes. sensory l o s s e s occur with v i s i o n , hearing, t a s t e , touch and s m e l l . by adopting a " p r o s t h e t i c approach" to design (carstens ) such changes c o u l d be compensated f o r . a " p r o s t h e t i c environment" o f f e r s a p p r o p r i a t e l e v e l s of c h a l l e n g e or support. i t compensates f o r l o s s e s by, f o r example, use of the b r i g h t e r c o l o r s and those i n the orange-yellow-red spectrum ( e a s i e r to d i s t i n g u i s h ) , u s i n g l o w e r - p i t c h e d sounds (which are more e a s i l y heard), p r o v i d i n g t a c t i l e cues t h a t may be more e a s i l y p e r c e i v e (walking s u r f a c e ) . ) improve comprehension and o r i e n t a t i o n i n the new e n v i r o n - ment; r a t i o n a l e : "changes i n mental f u n c t i o n i n g brought about by age can r e s u l t i n behavior t h a t i n c l u d e s memory l o s s , f o r g e t f u l n e s s , d i s o r i e n t a t i o n and incoherence"(jordan , p. ) to promote wayfinding and o r i e n t a t i o n the c i r c u l a t i o n pat- t e r n of the whole ccc f a c i l i t y should be simple and e a s i l y a c c e s s i b l e . for example, s i g n s should be l a r g e enough to be read and l o c a t e d at a h e i g h t convenient f o r people with v i s u a l l i m i t a - t i o n ; the b u i l d i n g plans and outdoor areas should promote way- f i n d i n g through v i s u a l c l u e s which emphasize the c h a r a c t e r of any p a r t i c u l a r area. ) encourage s o c i a l i n t e r a c t i o n between r e s i d e n t s (and v i s i t o r s ) ; r a t i o n a l e ; with age an o l d e r person's s o c i a l c o n t a c t s are o f t e n reduced by: l o s s of h e a l t h , death of spouse or f r i e n d s and c h i l d r e n moving away. older people look f o r o p p o r t u n i t i e s to e s t a b l i s h new acquaintances or f r i e n d s h i p (jordan , p. ) a s p e c i a l l y designed environment which promotes and encour ages the e l d e r l y i n s o c i a l i n t e r a c t i o n can help to e s t a b l i s h new f r i e n d s and acquaintances. for example, the amenity spaces such as lounges, d i n i n g f a c i l i t i e s , w a i t i n g areas should provide an i n t i m a t e atmosphere which promotes p r i v a t e c o n v e r s a t i o n ; game rooms, a r t s and c r a f t s , swimming pool and other components should i n c r e a s e o p p o r t u n i t i e s f o r s o c i a l i n t e r a c t i o n ; outdoor r e c r e a t i o n a l f a c i l i t i e s may a t t r a c t younger persons and promote a mix of age c o h o r t s . ) s t i m u l a t e p a r t i c i p a t i o n i n a c t i v i t i e s ; r a t i o n a l e ; with age can come a r e d u c t i o n i n one's s e l f - c o n f i - dence (lawton ). in order to encourage p a r t i c i p a t i o n i n a c t i v i t i e s some design f e a t u r e s should be implemented. for example, the group a c t i v i t i e s i n the amenity areas such as a r t s and c r a f t s should be v i s i b l e f o r passing-by observers by p r o v i d i n g open s t u d i o s ( r a t h e r than c l o s e d - o f f rooms), lounges should be adjacent to "where the a c t i o n i s " , outdoor a c t i v i t y areas should be surround- ed by a s e a t i n g area f o r watching. ) provide o p p o r t u n i t i e s f o r i n d i v i d u a l p r i v a c y i n c o n t a c t with o t h e r s ; r a t i o n a l e ; with age many people want more i n t i m a t e c o n t a c t with one or two others (jordan ). common spaces: p r o v i d i n g q u i e t corners (alcoves) i n lounges or by f u r n i t u r e arrangement (two-person t a b l e i n d i n i n g room) f o r example, may improve p r i v a c y or encourage more i n t i m a t e c o n v e r s a t i o n . outdoor spaces: should i n c l u d e secluded s e a t i n g areas and r e t r e a t s . the d w e l l i n g u n i t : should provide a space arrangement which may c r e a t e one's own t e r r i t o r y . t h i s i s s u e i s d i s c u s s e d i n g r e a t e r d e t a i l i n chapter . ) improve the p u b l i c image of the e l d e r l y . r a t i o n a l e : negative, o b s o l e t e s t e r e o t y p e s about the e l d e r l y are a s s o c i a t e d with d i s a b i l i t y and s i c k n e s s . the f a c i l i t y should be designed to improve the p u b l i c ' s a t t i t u d e s and o p i n i o n s about the e l d e r l y by c r e a t i n g an e n v i r o n - ment i n which the e l d e r l y c o u l d f u n c t i o n e f f e c t i v e l y as a p a r t of the community but not as an i s o l a t e d i n s t i t u t i o n f o r d i s a b l e d or s i c k people. l.e.o. # to provide the s a f e t y and s e c u r i t y . r a t i o n a l e : older people are e s p e c i a l l y s e n s i t i v e to the need of secure environment because of reduced l e v e l s of p h y s i c a l and mental competence (lawton ). fear of crime, s t o l e n p r o p e r t y and concern about f a l l i n g or being a t t a c k e d and not being seen or a i d e d are high among o l d e r people. they are more v u l n e r a b l e to long-term d i s a b i l i t i e s caused by a f a l l or an a t t a c k . . the f a c i l i t y should be l o c a t e d i n an area where people are reasonably safe from robbery, muggings or p e r s o n a l harassment. . the f a c i l i t y should p r o v i d e s e r v i c e s , which may improve f e e l i n g s of s a f e t y f o r example: home support s e r v i c e s , s e c u r i t y personnel. . outdoor areas and main p e d e s t r i a n walkways should be l o c a t e d to allow f o r v i s u a l s u r v e i l l a n c e by r e s i d e n t s and s t a f f . . outdoor common areas used by r e s i d e n t s should be enclosed w i t h i n c l u s t e r s . . a c l e a r t r a n s i t i o n from neighbourhood p u b l i c space to p r i - vate space should be implemented by p r o v i d i n g t r a n s i t i o n a l zones: p u b l i c , s e m i p u b l i c (the ccc community), s e m i p r i v a t e ( c l u s t e r space), p r i v a t e ( p a t i o ) . . the s i t e p l a n n i n g should c l e a r l y d e f i n e edge c o n d i t i o n s such as f e n c i n g and gates, which may f o s t e r a sense of s e c u r i t y . . the f a c i l i t y should provide p h y s i c a l s a f e t y f e a t u r e s . a l l f a c i l i t y entrances and e x i t s should be v i s u a l l y s u p e r v i s e d by s t a f f ( c l o s e d - c i r c u i t v i d e o / t v system). p u b l i c areas should be p r o t e c t e d by an emergency l i g h t i n g system i n case of power f a i l u r e . hazards to p e r s o n a l s a f e t y should be minimized by p r o v i d i n g s a f e t y f e a t u r e s such as: h a n d - r a i l s i n c o r r i d o r s , n o n - s l i p f l o o r s , grab bars i n washrooms and bathrooms, emergency c a l l boxes and telephones throughout the b u i l d i n g s and i n the outdoor common areas. l.e.o. # to provide a v a r i e t y of environments. . to provide a s p e c i f i c combination of environments f o r the e l d e r l y which w i l l i n c l u d e : a. a "home-like" environment i n the d w e l l i n g c l u s t e r s at a l l l e v e l s of care. b. a " s o c i a l community" environment i n the amenity areas and outdoor a c t i v i t y c e n t r e . c. environments which w i l l be a e s t h e t i c a l l y a p p e a l i n g to the r e s i d e n t s , t h e i r f a m i l i e s and f r i e n d s , the s t a f f and the community at l a r g e . r a t i o n a l e : the continuum of care complex w i l l be the new p l a c e to l i v e i n but by p r o v i d i n g a r e s i d e n t i a l c h a r a c t e r i t might help the r e s i d e n t s to r e t a i n t h e i r s e l f - i d e n t i t i e s and l i f e - s t y l e s . . to d i m i n i s h " o l d - f o l k s home" s t e r e o t y p e . r a t i o n a l e : long term care f a c i l i t i e s are u s u a l l y a s s o c i a t e d with the s t e r e o t y p e of i n s t i t u t i o n a l c h a r a c t e r which consequently c r e a t e s negative p u b l i c o p i n i o n . older people don't l i k e to move i n because of f e a r of becoming a " p a t i e n t " ; the neighbourhood does not l i k e to have such a f a c i l i t y near by because of i t s negative image. " r e g r e t t a b l y , the p u b l i c image of aging i n our s o c i e t y a s c r i b e s d i s a b i l i t y and s i c k n e s s to the m a j o r i t y of o l d e r people"(lawton , p. ). g e r o n t o l o g i s t s are unanimous i n f e e l i n g t h a t the i n s t i t u t i o n i s the l e a s t d e s i r a b l e p l a c e f o r o l d e r people and they encourage any attempt to design s e r v i c e s and environments which can prolong r e s i d e n c e i n the community. . to c r e a t e an o p p o r t u n i t y f o r a "new s t a r t " . r a t i o n a l e : the f a c i l i t y might a l s o provide o p p o r t u n i t i e s f o r the r e s i d e n t s to make l i f e more enjoyable by e s t a b l i s h i n g a new p a t t e r n of s o c i a l l i f e . the ccc, i n p r i n c i p l e , w i l l a l s o be a p a r t of the neighbourhood by p r o v i d i n g a g r e a t number of s e r - v i c e s and programs f o r r e s i d e n t s and the e n t i r e community. the proposed core centre, the i n n o v a t i v e program component, should become an a c t i v e " s o c i a l community" which encourages i n t e r a c t i o n not o n l y among f a c i l i t y r e s i d e n t s but a l s o with f r i e n d s , r e l a - t i v e s and aquaintances from the neighbourhood. a v a r i e t y of f a c i l t i e s open to the p u b l i c such as a swimming p o o l , l i b r a r y , auditorium, a r t and c r a f t s , e t c . should b r i n g people together. moreover, the core centre should provide mental and s o c i a l s t i m u l a t i o n . the e l d e r l y should be encouraged to c o n t r i b u t e or p a r t i c i p a t e i n the running of the centre. they can s t a f f the r e c e p t i o n desk, organize c u l t u r a l events, run the l i b r a r y , take care of the garden e t c . they can j o i n f o r c e s to r a i s e funds f o r a s p e c i a l p r o j e c t and i n t e r a c t with community r e s i d e n t s . they can have the o p p o r t u n i t y to earn e x t r a income by s e r v i n g f o r example as instrument and languages t e a c h e r s , p r e p a r i n g income tax e t c . they can be very c r e a t i v e i n a r t s and c r a f t s and the core centre may become a very important p a r t of t h e i r l i v e s . . . residents' objectives (r.o.) the most important o b j e c t i v e s f o r r e s i d e n t s choosing to l i v e i n the ccc have been agglomerated i n t o three b a s i c groups of needs: r e s i d e n t i a l , h e a l t h care and s o c i a l needs. r.o. # residential tenure choice to provide rented accommodation f o r those who are unable to purchase t h e i r d w e l l i n g u n i t s . to provide a l t e r n a t i v e hous- i n g f o r those who wish to r e l i n q u i s h the r e s p o n s i b i l i t y of ownership. r a t i o n a l e : although the income of e l d e r l y canadians has i n c r e a s e d substan- t i a l l y over the l a s t few years there i s s t i l l an income gap between the e l d e r l y and the r e s t of the p o p u l a t i o n . the f i n a n c i - a l p o s i t i o n of e l d e r l y men has improved more than t h a t of e l d e r - l y women ( n a t i o n a l c o u n c i l of welfare, ). a c c o r d i n g to s t a t i s - t i c s canada, the e l d e r l y are h e a v i l y dependent on p u b l i c pension and income s e c u r i t y p l a n s . in , % of f a m i l i e s i n which the head of the household was years or over were below the poverty l i n e . c o r r e s p o n d i n g l y , . % of unattached i n d i v i d - u a l s years of age or over were a l s o below the poverty l i n e . in the west p o i n t grey area, the average household income i s $ , ; however, . % of a l l households income i s o n l y $ , . the worst s i t u a t i o n i s i n adjacent k i t s i l a n o where a household income of $ , r e p r e s e n t s % of a l l households ( c i t y h a l l data, ). although the f i n a n c i a l p o s i t i o n of e l d e r - l y people has improved and the trend toward f i n a n c i a l s e c u r i t y w i l l continue ( n a t i o n a l c o u n c i l of welfare, ) a t t e n t i o n must be p a i d to those people who d i d not make pension c o n t r i b u t i o n s or save d u r i n g t h e i r younger years. for example, many women f i n d themselves i n t h i s s i t u a t i o n . a c c o r d i n g to a survey of b.c. housing management commission a p l i c a n t s , the t y p i c a l s e n i o r seek- i n g a s s i s t a n c e was female ( %), aged - ( %), l i v i n g i n a- partment ( %) and spending % of her income on r e n t i n g s h e l t e r . on the other hand, f o r more a f f l u e n t s e n i o r homeowners, the a v a i l a b i l i t y of a l t e r n a t i v e housing which w i l l respond to t h e i r s p e c i f i c needs c o u l d convince them to s e l l t h e i r homes. accord- i n g to an sfu study of s e n i o r s aged - , - , and + conducted by gutman ( ), e n t i t l e d "seniors r e a c t i o n to new v i s t a ' s community concept", the p r o p o r t i o n of homeowners who had thought s e r i o u s l y about s e l l i n g t h e i r home i n c r e a s e d with i n - c r e a s i n g age. t h e i r major reasons f o r doing so were p h y s i c a l d i f f i c u l t y m a i n t a i n i n g t h e i r home or garden and the i l l n e s s of themselves or t h e i r spouse. "when asked why they d i d not s e l l , a t h i r d of respondents s a i d i t was because they d i d not want to change t h e i r l i f e - s t y l e , . % s a i d i t was because they c o u l d not f i n d a b e t t e r a l t e r n a t i v e while . % r e p o r t e d they were s t i l l c o n s i d e r i n g s e l l i n g " (gutman, p. ). when homeowners were asked whether, i f they were to s e l l t h e i r home, they would be more l i k e l y to buy or r e n t t h e i r next accommodation, those i n the youngest group ( - ) were about e q u a l l y s p l i t between r e n t i n g and buying another home. the p r o p o r t i o n who would buy decreased with i n c r e a s i n g age. renting was c l e a r l y the p r e f e r e n c e of those i n the o l d e s t ( +) group. respondents were a t t r a c t e d to the new v i s t a s i t e because new v i s t a was w e l l l o c a t e d , there would be access to the care c e n t r e i f long-term care was needed and there would be medical personnel nearby i n the event of an emergency (gutman , p. ). the o l d e s t group of respondents were convinced t h a t people who c o u l d a f f o r d to pay market r e n t would move to a s i t e where the other b u i l d i n g s housed mainly low income people - as long as those low income people were s e n i o r s . based on these data, we can assume t h a t there i s the p o s s i b i l i t y of c o e x i s t a n c e of r e s i d e n t s with low income and the b e t t e r o f f e l d e r l y people. t h e r e f o r e , a f f o r d a b l e housing f o r the e l d e r l y with low income and a l t e r n a t i v e housing f o r those who wish to s e l l t h e i r home w i l l be an important o b j e c t i v e i n c r e a t i o n of a continuum of care complex i n west p o i n t grey area. t h i s c o u l d be achieved by: . p r o v i d i n g housing through bchmc programs where housing charges do not exceed % of the r e s i d e n t ' s income. according to the c i t y h a l l p l a n n i n g department ( ) the number of people r e q u i r i n g a s s i s t e d housing was , . . p r o v i d i n g co-operative housing based on the cmhc a s s i s t a n c e program or a f f o r d a b l e s e n i o r s ' housing without government a s s i s t a n c e . for example, avondale cooperative housing f o r s e n i o r s i n north-surrey has won the cmhc award i n the f i n a n - c i n g and tenure category. members bought shares i n the co-op and organized r i g h t s as shareholders i n a c o r p o r a t i o n . by paying o f f the mortgage they i n c r e a s e t h e i r s h a r e h o l d i n g u n t i l they have i n v e s t e d the f u l l value of the u n i t . then they j u s t pay monthly maintenance f e e s . since the value of a share does not i n c r e a s e over time, the p r i c e of a u n i t w i l l remain the same. members who move out r e c e i v e the amount they have i n v e s t e d without making a p r o f i t ( r e b a l s k i ). because the share p r i c e w i l l remain low and, i n f a c t , decrease i n p r o p o r t i o n to the r i s i n g c o s t of other housing, the co-op w i l l have an ever broadening market of people who can a f f o r d shares. . provide s t r a t a t i t l e condominiums f o r those who can i n v e s t a p o r t i o n of e q u i t y recovered from s e l l i n g t h e i r present home and who wish to have a h i g h e r standard of housing than may be p r o v i d e d by other forms of housing. for example, more l i v i n g space, more a m e n i t i e s , b e t t e r f i n i s h m a t e r i a l s . r.o. # health care needs to provide h e a l t h care s e r v i c e s f o r a l l r e s i d e n t s of the ccc f a c i l i t y . to provide h e a l t h care s e r v i c e s f o r the e l d e r l y r e s i d e n t s and i n the e n t i r e neighbourhood. r a t i o n a l e : h e a l t h matters are of d i s t i n c t importance when c o n s i d e r i n g the needs of the e l d e r l y . i l l n e s s and l o n e l i n e s s become r e a l i s t i c f e a r s f o r o l d e r people. given t h a t t w o - t h i r d s of d i s a b l e d people are a l s o e l d e r l y people, the importance of h e a l t h and s o c i a l s e r v i c e s p r o v i s i o n i s s e l f - e v i d e n t . the e l d e r l y use more medical s e r v i c e s than any other a d u l t age group, the o l d e l d e r l y use more than young e l d e r l y and women use more than men (gutman ). i n c r e a s i n g age among the e l d e r l y i s a s s o c i a t e d with a decrease i n h e a l t h i n the form of c h r o n i c i l l n e s s , p h y s i c a l h e a l t h d y s f u n c t i o n and dependency on o t h e r s . as the l e v e l of dependency of an i n d i v i d u a l i n c r e a s e s , so too does the l e v e l of s e r v i c e s r e q u i r e d to keep t h a t person a t home. i f more e l d e r l y are to remain at home (gvrhd report ), formal s e r v i c e s must be provided. at some p o i n t the c o s t of formal s e r v i c e s i n the home w i l l become h i g h e r than the c o s t of care i n an i n s t i t u t i o n . with i n c r e a s e s i n the p r o p o r t i o n of the e l d e r l y i n the h i g h e r age groups, e s p e c i a l l y years of age and over ( s t a t i s t i c s canada ), home care may no longer be a c o s t - s a v i n g measure. moreover, there w i l l always be some e l d e r l y f o r whom there i s no a l t e r n a t i v e to i n s t i t u t i o n a l i z a t i o n . in other words i t i s not a q u e s t i o n of f a i l i n g to support d e i n s t i - t u t i o n a l i z a t i o n but r a t h e r of p r o v i d i n g the best p o s s i b l e h e a l t h care to the e l d e r l y i n the most a p p r o p r i a t e s e t t i n g at a c o s t t h a t s o c i e t y can a f f o r d (canadian m e d i c a l a s s o c i a t i o n ). t h e r e f o r e , a f a c i l i t y which w i l l have h e a l t h care s e r v i c e s a t hand would be i n g r e a t demand by aged people. a c c o r d i n g to r e s e a r c h (gutman ) on r e a c t i o n s of c u r r e n t homeowners to the p o s s i b l i t y of p r o v i d i n g market r e n t a l u n i t s a t the new v i s t a s i t e , the data c l e a r l y show t h a t having h e a l t h care s e r v i c e s on the s i t e would i n c r e a s e new v i s t a ' s a t t r a c t i v n e s s , e s p e c i a l l y f o r those i n the o l d e s t ( +) group. two-thirds of the two younger groups of respondents and f o u r - f i f t h s of the o l d e s t group f e l t the s e r v i c e s would be used by those i n the surrounding area i f they were of good q u a l i t y , d i d not d u p l i c a t e s e r v i c e s c l o s e by, i f they were handy and/or i f t h e i r c o s t was reasonable. the respondents were a l s o e n t h u s i a s t i c about new v i s t a p r o v i d i n g such t r a d i t i o n a l , long-term support s e r v i c e s as meals-on-wheels, an a d u l t day care c e n t r e , r e s p i t e or n i g h t care. approximately h a l f ( . %) of the respondents supported the i d e a i n p r i n c i p l e . an a d d i t i o n a l . % p o i n t e d out t h a t such s e r v i c e s would extend independence, reduce w o r r i e s and/or help c a r e - g i v e r s (gutman ). resident's h e a l t h care needs may be s a t i s f i e d by: . the continuum of care complex p r o v i d i n g a choice of l i v i n g accommodations s u i t a b l e f o r persons at v a r y i n g l e v e l s of dependence and a range of care s e r v i c e s from which they can s e l e c t to meet t h e i r complex needs. in order to s a t i s f y h e a v i e r h e a l t h care needs, the ccc should provide an intermediate care f a c i l i t y (three l e v e l s ) and an extended care f a c i l i t y . . the ccc f a c i l i t y should provide a health care c l i n i c with d o c t o r s and d e n t i s t o f f i c e s , a r e h a b i l i t a t i o n centre and a pharmacy, which w i l l serve the r e s i d e n t s as w e l l as e l d e r l y people of the whole neighbourhood. . the ccc should provide a d u l t day/night care, r e s p i t e care and h o l i d a y v a c a t i o n care beds p r o v i d i n g r e l i e f f o r r e l a t i v e s c a r i n g f o r the e l d e r l y at home. r.o. # social needs the ccc f a c i l i t y should provide a s u p p o r t i v e s o c i a l l i v i n g environment. r a t i o n a l e : in the f u t u r e , there w i l l be fewer f a m i l y members a v a i l a b l e to provide care to the e l d e r l y due to the i n c r e a s i n g number of small f a m i l i e s without any c h i l d r e n and due to r i s i n g d i v o r c e r a t e s . high m o b i l i t y which o f t e n r e q u i r e s a d u l t c h i l d r e n to l i v e a t some d i s t a n c e from t h e i r aging parents w i l l a l s o have an impact on the s o c i a l support r e q u i r e d to be p r o v i d e d to o l d e r people. increased female p a r t i c i p a t i o n i n the workforce w i l l l i m i t the a b i l i t y of a d u l t daughters ( t r a d i t i o n a l c a r e - g i v e r s ) to care f o r t h e i r aging parents. t h e r e f o r e , other a l t e r n a t i v e l i f e s t y l e s which w i l l provide d i f f e r e n t types of s o c i a l support w i l l be sought a f t e r . moreover, the e l d e r l y and p a r t i c u l a r l y e l d e r l y women are p r e c i s e l y the persons who can become i s o l a t e d i n a s o c i e t y which i s centered around the n u c l e a r f a m i l y of mother, f a t h e r and c h i l d r e n . in the p o i n t grey area, e l d e r l y women s i g n i f i c a n t l y outnumber e l d e r l y men. t h e r e f o r e , they may be p o t e n t i a l a p p l i c a n t s f o r admission to the ccc, l o o k i n g f o r a s u p p o r t i v e l i v i n g environment with peers. the ccc f a c i l i t y should c r e a t e a s t r o n g community f e e l i n g i n order to s a t i s f y r e s i d e n t s ' s o c i a l needs. for o l d e r people f e e l - i n g t h a t they belong to a community, which they are proud of, i s important f o r s e l f - e s t e e m and s a t i s f a c t i o n . in a s o c i e t y where s t a t u s and r o l e are d e f i n e d i n work s i t u a t i o n s , the e l d e r l y are d e p r i v e d of such d i s t i n c t i d e n t i f i c a t i o n (champagne and b r i n k , ). there w i l l be two ways to achieve t h i s o b j e c t i v e : . by e s t a b l i s h i n g p o l i c i e s t h a t r e s i d e n t s p l a y a c r i t i c a l r o l e i n the ccc f a c i l i t y ownership, management and development process. for example, r e s i d e n t s w i l l be members of one of three (co-op, s t r a t a - t i t l e , bchmc s u b s i d i z e d housing) hous- i n g s o c i e t i e s r e s p o n s i b l e f o r the management and o p e r a t i o n of t h e i r u n i t s . a l l "community" f a c i l i t i e s (the core centre) w i l l be shared and managed by the boards of d i r e c t o r s of a l l three s o c i e t i e s i n c o o p e r a t i o n with a p r o f e s s i o n a l p r o p e r t y management o r g a n i z a t i o n . development of the new ccc f a c i l i t y would be the boards' major r e s p o n s i b i l i t y . . by i n t r o d u c i n g s o c i a l s e r v i c e s and by d e s i g n i n g a p h y s i c a l environment which w i l l f a c i l i t a t e s o c i a l i n t e r a c t i o n . the ccc program c a l l s f o r s e v e r a l s o c i a l s e r v i c e s , which w i l l provide programs of c r e a t i v e ( a r t s and c r a f t ) and r e c r e a - t i o n a l a c t i v i t i e s ( s p o r t s , games) as w e l l as i n t r o d u c e e d u c a t i o n a l and c u l t u r a l programs t h a t w i l l be h e l d i n a -seat a u d i t i o r i u m f o r both r e s i d e n t s and n o n - r e s i d e n t s . the housing c l u s t e r arrangement w i l l c r e a t e o p p o r t u n i t i e s f o r chance meetings so t h a t r e s i d e n t s of the same housing c l u s t e r w i l l at l e a s t recognize each other. . . facility management objectives (f.m.o.) the management o b j e c t i v e s are somewhat s i m i l a r to design o b j e c t i v e s : both the management p o l i c i e s and the p h y s i c a l e n v i ronment may e q u a l l y produce i n s t i t u t i o n a l i z a t i o n . the impact of i n s t i t u t i o n a l i z a t i o n i s apathy, withdrawal and disengagement. t h i s o b v i o u s l y i s not the q u a l i t y of l i f e which should be o f f e r - ed to e l d e r l y people. the ccc f a c i l i t y should be d e d i c a t e d to the p r o v i s i o n of a home-like environment emphasizing q u a l i t y of l i f e and encouraging growth of each i n d i v i d u a l member of i t s community. the r e s i d e n t s should be esteemed and e n t i t l e d to the best of r e s t o r a t i v e and s u p p o r t i v e care: emotional, i n t e l l e c t u - a l , s p i r i t u a l , p h y s i c a l and s o c i a l . rules and r e g u l a t i o n s which impose b a r r i e r s t h a t segregate those i n each l e v e l of care should be avoided where p o s s i b l e , to allow development of a sense of community. f.m.o. # management of the ccc should a l l o w r e s i d e n t s (and v i s i t o r s ) to perform tasks f o r themselves and r e i n f o r c e a sense of autonomy and u s e f u l n e s s . r a t i o n a l e : some autonomy i s s a c r i f i c e d i n housing p r o j e c t s by p r o v i d i n g group s e r v i c e s and f a c i l i t i e s . mostly i t i s caused by economic f a c t o r s . in a d d i t i o n , r e t i r e m e n t o f t e n b r i n g s the l o s s of important r o l e s i n s o c i e t y and a sense of u s e l e s s n e s s (carstens ). management p o l i c i e s should respond to the e l d e r l y ' s needs and a l l o w r e s i d e n t s to r e i n f o r c e t h e i r sense of autonomy and u s e f u l n e s s by p r o v i d i n g : . easy access to a l l ccc f a c i l i t i e s and s e r v i c e s . . comfort and ease of use (the core centre, outdoor space). . o p p o r t u n i t i e s f o r p a r t i c i p a t i o n i n a c t i v i t i e s , a c t i v i t y o r g a n i z i n g and s e r v i c e d e l i v e r y ( s e n i o r s ' c e n t r e ) . . o p p o r t u n i t i e s to p a r t i c i p a t e i n outdoor maintenance (gardening committee). f.m.o. # management p o l i c i e s should encourage independence and use of the ccc f a c i l i t i e s . r a t i o n a l e : management p o l i c i e s on use of f a c i l i t i e s and a c t i v i t y programming are c r i t i c a l f o r encouraging independence and the optimal f u n c t i o n i n g of the i n d i v i d u a l (carstens ). e l d e r l y people are more l i k e l y than younger people to a d j u s t to e x i s t i n g r u l e s and c o n d i t i o n s although these may not accommodate t h e i r needs and may discourage use and s a t i s f a c t i o n with the surround- i n g environment. management should: . create a forum f o r s o l v i n g problems and d i s c u s s i n g i s s u e s r e l a t e d to the growth and development of the ccc i n promot- i n g i n d i v i d u a l and group needs, a b i l i t i e s and a s p i r a t i o n s such as a r e s i d e n t design board which can e v a l u a t e , review and propose changes or a d d i t i o n s to the ccc f a c i l i t i e s . . i d e n t i f y common problems, s e r v i c e gaps and areas f o r program and s e r v i c e expansion eg: a r e s i d e n t program board to organize s p e c i a l events which may i n c r e a s e use of f a c i l i t i e s i n the core centre and outdoor spaces. . advise on l e a r n i n g experiences, o p p o r t u n i t i e s f o r growth and promotion of freedom of choice to help o l d e r people, e s p e c i a l l y d i s a b l e d , to be more s e l f - s u f f i c i e n t and independent, eg: r e s i d e n t education board and programs. f.m.o. # o b j e c t i v e : management p o l i c y should encourage r e s i - dents to p e r s o n a l i z e , change and c o n t r o l the ccc environment. r a t i o n a l e : " p e r s o n a l i z a t i o n and c o n t r o l over the environment i s important f o r s e l f - e s t e e m and s a t i s f a c t i o n , p a r t i c u l a r l y f o r aging persons who experience a c l o s i n g o f f of l i f e ' s o p t i o n s . being able to change and p e r s o n a l i z e the environment allows i n d i - v i d u a l needs and p r e f e r e n c e s to be s a t i s f i e d . a sense of c o n t r o l a l s o i n c r e a s e s the f e e l i n g of home and the use of a space while d e c r e a s i n g the i n s t i t u t i o n a l c h a r a c t e r of planned housing" (carstens , p. ). mangement p o l i c i e s should: . encourage r e s i d e n t s to p e r s o n a l i z e t h e i r own d w e l l i n g u n i t s e s p e c i a l l y i n the long term care c l u s t e r s by p r o v i d i n g o p p o r t u n i t i e s f o r d i s p l a y of t h e i r p e r s o n a l belongings and f u r n i t u r e . . accentuate u n i t e n t r y with flowers or other p e r s o n a l items. . provide r e s i d e n t s with t h e i r own amenities to take care o f : l i k e aquariums, b i r d s f e e d e r s . . f a c i l i t a t e c o n t r o l over placement w i t h i n the ccc environment by p r o v i d i n g , f o r example, movable f u r n i t u r e . f.m.o. # management should make the p l a c e a p p e a l i n g i n terms of a r e l a x e d atmosphere and f r i e n d l y yet unobstructed s e r v i c e s as w e l l as " f r i e n d l y , p h y s i c a l environment". r a t i o n a l e : the e l d e r l y are more v u l n e r a b l e because of day to day d i f f i c u l t i e s . contact with a new s t a f f or other r e s i d e n t s may cause a n x i e t y and reduce c o n f i d e n c e . the o l d e r people r e q u i r e time to evaluate and prepare f o r changes i n the environment. through a r e l a x e d , p o s i t i v e atmosphere and c h e e r f u l ambience management may e l e v a t e r e s i d e n t s mood and s a t i s f a c t i o n . for example: a l l l o u n g e s / d i n i n g rooms should be equipped with home l i k e a c c e s s o r i e s : b r i g h t c o l o u r e d t a b l e c l o t h , f r e s h flowers on each t a b l e , comfortable f u r n i t u r e . f.m.o. # management should c e n t r a l i z e a l l s u p p o r t i v e s e r - v i c e s , but r e t a i n home-like environment w i t h i n r e s i d e n t i a l c l u s t e r . r a t i o n a l e : c e n t r a l i z a t i o n of a number of f a c i l i t i e s may c o n s i d e - r a b l y reduce the number of s t a f f t h a t i s r e q u i r e d to perform those s e r v i c e s , which consequently may reduce o p e r a t i n g c o s t s of the ccc f a c i l i t y . in a d d i t i o n to t h a t , c e n t r a l i z e d comprehen- s i v e s e r v i c e s i n the f a c i l i t y w i l l a l l o w f o r ease of access f o r r e s i d e n t s and s t a f f . the management of the whole f a c i l i t y may be more e f f e c t i v e and e a s i e r too. the ccc should c e n t r a l i z e a number of s e r v i c e s i n the core centre such as: ) c e n t r a l a d m i n i s t r a t i o n ) c e n t r a l food s e r v i c e s ) c e n t r a l laundry ) c e n t r a l m a t e r i a l s e r v i c e s ) c e n t r a l b u i l d i n g s e r v i c e s ) c e n t r a l p l a n t s e r v i c e s ) c e n t r a l personnel s e r v i c e s ) c e n t r a l s o c i a l s e r v i c e s ) c e n t r a l h e a l t h care s e r v i c e s . . . community objectives (co.) the neighbourhood environment may be the source of aes- t h e t i c enjoyment, p h y s i c a l s e c u r i t y , sensory v a r i e t y , b a s i c r e s o u r c e s , help i n emergencies, s o c i a l i n t e r a c - t i o n , i n t e r e s t i n g t h i n g s to do, the f e e l i n g of t e r r i t o - r i a l p r i d e , and many other s a t i s f i e r s of human needs (lawton , p. ). to provide the e l d e r l y with a l l these a t t r i b u t e s of an " i d e a l environment", i t i s necessary to sense the general community o b j e c t i v e s . these o b j e c t i v e s ( s u b j e c t to the planning department and p o i n t grey neighbourhood groups approval) have s i m i l a r background to the p r e v i o u s two groups of o b j e c t i v e s : to c r e a t e a s p e c i a l continuum of care neighbourhood f o r the e l d e r l y w i t h i n the l a r g e r context of the community development p l a n . the "mini" ccc community should attempt to recognize both unique needs f o r s p e c i a l s e r v i c e s i t may o f f e r to e l d e r l y people l i v i n g o u t s i d e the ccc, the advantages of l i v i n g c l o s e to age peers, and s i m u l t a n e u s l y the need to r e t a i n some u n i t y with the people and the resources of the p o i n t grey community. c o . # to provide the ccc f a c i l i t y i n the p o i n t grey area i n order to prevent l o c a l e l d e r l y people from enduring r e l o c a t i o n s t r e s s . r a t i o n a l e : although i t i s g e n e r a l l y assumed t h a t r e t i r e m e n t con- s t i t u t e s an o c c a s i o n f o r many people to move, the very low m o b i l i t y r a t e of the e l d e r l y a t t e s t s to the f a c t t h a t r e l a t i v e l y few make t h i s type of change. e l d e r l y people need to continue to l i v e i n the same community and to r e t a i n the t i e s of t h e i r p r e v i o u s e x i s t e n c e . the move to an i n s t i t u t i o n i s traumatic enough. a number of s t u d i e s on i n v o l u n t a r y r e l o c a t i o n have documented negative consequences and f o r o l d e r people, p a r t i c u l a r l y , i n c r e a s e i n m o r t a l i t y and m o r b i d i t y r a t e s (gutman ; lawton ). in order to r e t a i n the e l d e r l y w i t h i n the same community the u s a b i l i t y of i t s resources i s of major concern f o r planners and f o r those r e s p o n s i b l e f o r d e l i v e r i n g s e r v i c e s . to achieve t h i s task i t i s necessary: . to l o c a t e e l d e r l y people near d e s i r a b l e r e s o u r c e s . the new ccc housing should be l o c a t e d near e x i s t i n g shopping m a l l s , bus stops, banks, parks. . to l o c a t e d e s i r a b l e resources near e x i s t i n g c o n c e n t r a t i o n of o l d e r people. the ccc long-term f a c i l i t i e s , a d u l t day/night care, s e n i o r center, r e c r e a t i o n a l a c t i v i t y club, c l i n i c should be l o c a t e d i n c l o s e p r o x i m i t y to the e x i s t i n g e l d e r l y h a b i t a t i o n areas. . to m o b i l i z e e x i s t i n g resources to t a i l o r programs to the e l d e r l y . for example, l o c a l merchants' i n s t i t u t i n g d i s c o u n t s f o r s e n i o r s - s e n i o r ' s day i n bank, drugmart, r e s t a u r a n t s or e s t a b l i s h i n g a new program f o r s e n i o r s i n the community c e n t r e . . to m o b i l i z e i n f o r m a l resources of the neighbourhood which can provide support f o r the e l d e r l y who have g r e a t e r l i m i t a - t i o n s . for example, a v o l u n t e e r network p r o v i d i n g such s e r v i c e s as f r i e n d l y v i s i t o r s , s e c u r i t y c a l l system and pet therapy. c o . # provide easy access to neighbourhood r e s o u r c e s . r a t i o n a l e : access to neighbourhood resources i s important f o r g e n e r a l l i f e s a t i s f a c t i o n , morale and the optimal f u n c t i o n i n g of the i n d i v i d u a l , as w e l l as. f o r a v o i d i n g i s o l a t i o n from the r e s t of the community. a c c o r d i n g to lawton ( ), p r o x i m i t y to the neighbourhood resources and knowledge of the neighbourhood are two determi- nants which are r e l a t e d to w e l l - b e i n g of the e l d e r l y . s e v e r a l s t u d i e s on the e f f e c t of resources p r o x i m i t y to e l d e r l y housing have proved t h a t there are " c r i t i c a l d i s t a n c e s " beyond which e l d e r l y people d e c l i n e to use f a c i l i t i e s . for example, a laund- romat or s e n i o r s c e n t r e needed to be on the housing s i t e to be used maximally, a post o f f i c e or bus stop w i t h i n three b l o c k s , a g r o c e r y s t o r e , bank or p h y s i c i a n w i t h i n ten b l o c k s . however, other s t u d i e s have found t h a t the amount of use of resources i s not o n l y a s s o c i a t e d with d i s t a n c e to the resources but a l s o with s a t i s f a c t i o n with d i s t a n c e and p e r c e i v e d convenience (lawton, ). since walking i n c r e a s i n g l y becomes a major mode of t r a n s p o r t a t i o n f o r o l d e r people the new ccc f a c i l i t y should be l o c a t e d : . close to the neighbourhood's resources such as r e t a i l o u t l e t s , necessary s e r v i c e s (banks, l a y e r , e a t i n g o u t ) . . close to convenient p u b l i c t r a n s p o r a t i o n stops and safe and convenient walking r o u t e s . . located i n an a t t r a c t i v e p l a c e w i t h i n the community, focused on n a t u r a l beauty and views. . within c l o s e or with convenient access to e d u c a t i o n a l c e n t r e s (e.g. ubc). c o . # the ccc f a c i l i t y should provide l i f e s u s t a i n i n g r e s o u r c e s f o r i t s r e s i d e n t s and f o r the e l d e r l y l i v i n g i n the neighbourhood. r a t i o n a l e : gutman's ( ) study of s e n i o r s ' reactions to new v i s t a ' s community concept found t h a t more than t w o - t h i r d s i n the two younger groups and more than % i n the o l d e s t group express- ed enthusiasm f o r the i d e a of h e a l t h care s e r v i c e s (e.g.: doc- t o r s ' and d e n t i s t s ' o f f i c e s , p h y s i o t h e r a p i s t , p o d i a t r i s t , d i a g - n o s t i c lab) on the new v i s t a s i t e . respondents, e s p e c i a l l y i n the o l d e s t group, were very e n t h u s i a s t i c about the i d e a of new v i s t a p r o v i d i n g such t r a d i t i o n a l long-term care support s e r v i c e s as meal-on-wheels, a d u l t day care, r e s p i t e or n i g h t care. these o b j e c t i v e s have been d i s c u s s e d i n r.o. # . c o . # the ccc f a c i l i t y should c r e a t e an i n f o r m a l community network of f r i e n d s and r e l a t i v e s . r a t i o n a l e ; i n the community, r e s i d e n t s mingle with people of a l l age groups. t h e i r f r i e n d s h i p networks i n c l u d e f r i e n d s , r e l a t i v e s and acquaintances from a wide v a r i e t y c o n t e x t s . in a f a c i l i t y , the e l d e r l y are faced with a homogenous community. resources and programs should encourage p a r t i c i p a t i o n of the ccc r e s i d e n t s and a l s o v i s i t o r s from v a r i o u s s o c i a l groups. a c c o r d i n g to gutman*s r e s e a r c h on new v i s t a ( ) the most p r e f e r a b l e resources a s s o c i a t e d with a s e n i o r s ' housing complex f o r the youngest group of the e l d e r l y respondents was the a v a i l a b i l i t y of r e c r e a - t i o n a l and s o c i a l programs. the o l d e s t group was most a t t r a c t e d by the o p p o r t u n i t y f o r the companionship of age peers i n such complexes. the ccc f a c i l i t y should: . provide r e c r e a t i o n a l f a c i l i t i e s such as: - an outdoor a c t i v i t y c l u b with bowling, m i n i - g o l f , croquet, bbq - gardening c l u b which w i l l provide the o p p o r t u n i t y not o n l y f o r s o c i a l i n t e g r a t i o n , but a l s o f o r h o r t i c u l t u r e therapy. - indoor a c t i v i t i e s and programs such as a swimming p o o l , f i t n e s s c e n t r e , dancing c l u b , auditorium with multipurpose use. . provide s o c i a l programs, which encourage p a r t i c i p a t i o n of the r e s i d e n t s and v i s i t o r s such as: bingo, b r i d g e drama c l u b , s i n g along, a r t s and c r a f t s toastmaster c l u b , t r a v e l c l u b p i c n i c lunches, t e a and t a l k , shopping t r i p s . provide f a c i l i t i e s which w i l l provide the o p p o r t u n i t y f o r s o c i a l c o n t a c t s : r e s t a u r a n t c a f e / b a r winter garden with a r t s e x h i b i t i o n beauty s a l o n and h a i r d r e s s e r bank, s m a l l r e t a i l o u t l e t c o . # the ccc f a c i l i t y should provide l i f e e n r i c h i n g r e s o u r c e s which w i l l promote mental and s o c i a l i n t e g r a t i o n . r a t i o n a l e : l i f e e n r i c h i n g resources c o n t r i b u t e very much to w e l l being of the e l d e r l y (lawton ). as a p a r t of a comprehen- s i v e community s t r a t e g y to meet the needs of o l d e r people, the ccc f a c i l i t y through a v a r i e t y of s e r v i c e s and a c t i v i t i e s i n such areas as e d u c a t i o n , c r e a t i v e a r t s or l e a d e r s h i p development may support t h e i r independence, enhance d i g n i t y and encourage t h e i r involvements i n l i f e of the ccc community and the whole neighbourhood. with the growing p o p u l a t i o n of more educated e l d e r l y who are seeking l i f e s a t i s f a c t i o n i n more s o p h i s t i c a t e d ways, emphasis should be put on c r e a t i v e a c t i v i t i e s , s p e c i a l c l a s s e s along with other forms of a c t i v e r e c r e a t i o n . the ccc f a c i l i t y should: . p r o v i d e a small l i b r a r y with r e a d i n g and l i s t e n i n g rooms (music, languages). . an a u d i t i o r i u m and c l a s s e s f o r s p e c i a l e d u c a t i o n a l program such as guest l e c t u r e r s from u.b.c., or s.f.u., t r a v e l experiences and o t h e r s . . a r t s and c r a f t s programs because these provide so w e l l f o r the e x p r e s s i v e needs of the e l d e r l y . . e x c u r s i o n s to u.b.c. or s.f.u or downtown f o r s p e c i a l l e c t u r e or c u l t u r a l events . c o . # the ccc f a c i l i t y should enhance business i n t e g r a t i o n with the p o i n t grey community. r a t i o n a l e ; the ccc environment, which t r i e s to meet a v a r i e t y of e l d e r l y people needs, can be very expensive and does not provide a r e t u r n on the o r i g i n a l investment. the community can share the b e n e f i t i f the f a c i l i t y i s open to the p u b l i c . the ccc f a c i l i t y should: . provide f a c i l i t i e s such as day care, r e h a b i l i t a t i o n c e n t r e , c l i n i c , s t o r e s , r e s t a u r a n t , c a f e / b a r , h a i r d r e s s e r , pharmacy, auditorium, l i b r a r y to be shared by the community a t l a r g e . . provide membership cards f o r s p e c i a l r e c r e a t i o n a l a c t i v i t i e s and s o c i a l programs such as: bowling c l u b , croquet c l u b , swimming c l u b , dancing c l u b , gardening c l u b and o t h e r s . . . neighbourhood development objectives (n.d.o.) for the s e l e c t e d test s i t e (please r e f e r to chapter p. . . ) n.d.o. # the design and p l a n n i n g of the ccc f a c i l i t y has to ensure t h a t a new f a c i l i t y maintains l i v a b i l i t y , p r i v a c y and a sense of community: r a t i o n a l e : the new ccc f a c i l i t y has to be a p a r t of the e x i s t - i n g p o i n t grey community i n terms of b u i l d i n g p h y s i c a l c h a r a c t e r - i s t i c s as w e l l as s o c i a l i n f r a s t r u c t u r e . residents should be encouraged to go out i n t o the community but a t the same time the e l d e r l y l i v i n g i n the p o i n t grey area should be encouraged to p a r t i c i p a t e i n the ccc a c t i v i t i e s . the r e s i d e n t i a l p o r t i o n of the f a c i l i t y should provide b u i l d i n g s i n c l u s t e r s i n order to c r e a t e a mini community p r o v i d i n g p r i v a c y and l i v a b i l i t y to each r e s i d e n t . however, t h i s small ccc community should blend with the p o i n t grey neighbourhood. n.d.o. # the ccc development should c r e a t e a cohesive neigh- bourhood c h a r a c t e r and achieve v i s u a l c o m p a t i b i l i - t y with the surrounding housing. r a t i o n a l e : the e x i s t i n g apartment b u i l d i n g s along th ave and highbury s t r e e t are s t o r e y b u i l d i n g s which have no s p e c i a l a r c h i t e c t u r a l m e r i t . along th avenue there are s i n g l e s t o r e y o l d houses b u i l t as s i n g l e - f a m i l y homes. in terms of o v e r a l l massing a new development should provide a v a r i e t y of space o p t i o n s from s i n g l e f a m i l y housing to the m u l t i p l e - u n i t housing. n.d.o. # the ccc development should c o n t r i b u t e to s t r e e t - scape having i t s d i s t i n c t i v e c h a r a c t e r and v i s u a l i n t e r e s t . r a t i o n a l e : the c h a r a c t e r of s t r e e t s c o n t r i b u t e s s i g n i f i c a n t l y to a neighbourhood's image. i t i s t r a d i t i o n a l l y c r e a t e d by the l a n d s c a p i n g treatment of the f r o n t yard of i n d i v i d u a l s i t e s and the rhythm of b u i l d i n g s and s i d e yards. a v a r i e t y of b u i l d i n g s t y l e s around the s u b j e c t s i t e can c o e x i s t because the s t r e e t s - cape t i e s them together. on th avenue, c l o s e to alma s t r e e t , a more urban c h a r a c t e r i s e v i d e n t which i s c r e a t e d by the p r o x i m i t y of commercial b u i l d i n g s : new j e r i c h o m a l l and shopping and s e r v i c e s area. on th avenue and highbury s t r e e t the e x i s t i n g b u i l d i n g s c r e a t e a rhythm of the predominant r e s i d e n t i a l neighbourhood. along the north s i d e of th avenue, m u l i t i p l e - u n i t housing with minimal f r o n t yard setbacks c r e a t e a more urban s t r e e t c h a r a c t e r . a s t r e e t s c a p e with d i s t i n c t i v e c h a r a c t e r and v i s u a l i n t e r e s t should be achieved by: . e n s u r i n g t h a t the ccc p r o v i d e s b u i l d i n g treatment t h a t complements developments on adjacent s i t e s and c r e a t e s v i s u a l rhythm. . m a i n t a i n i n g a more urban s t r e e t s c a p e i n the north e a s t p a r t of the s i t e . n.d.o. # the ccc development e s p e c i a l l y the r e s i d e n t i a l p a r t should not block or reduce the e x i s t i n g views. r a t i o n a l e : the major p u b l i c view c o r r i d o r e x i s t s along highbury s t r e e t , l o o k i n g north. a p r i v a t e view i s a v a i l a b l e i n the southern p a r t of the s i t e and i n the northwest p a r t of the s i t e where there i s a view of the mountains and j e r i c h o park to the north. n.d.o. # the ccc development should be designed to minimize the p o t e n t i a l noise impact from th avenue. r a t i o n a l e : the c i t y h a l l data i n d i c a t e t h a t the v e h i c u l a r t r a f - f i c has a g r e a t impact on the q u a l i t y of l i f e i n the development along th avenue. in order to r e l e a s e the heavy t r a f f i c on th avenue and provide easy access to the s i t e the c i t y recommended an access to the ccc s i t e from highbury s t r e e t through s i x t h avenue. n.d.o. # i n d i v i d u a l d w e l l i n g u n i t s should enjoy a high degree of p r i v a c y . r a t i o n a l e ; in e l d e r l y housing p r i v a c y i s h i g h l y valued. i t i s important t h a t the ccc p r o v i d e s p r i v a c y f o r i t s r e s i d e n t s and does not erode the present l e v e l s of p r i v a c y enjoyed by adjacent p r o p e r t i e s e s p e c i a l l y i n the southern p a r t of the s i t e . t h i s should be achieved by: . o r i e n t i n g major windows away from the windows of adjacent u n i t s when d i s t a n c e between them i s l e s s than metres. . o r i e n t i n g b a l c o n i e s away from adjacent s i t e s ( u n i t s ) , or s c r e e n i n g them to minimize overlook. . p r o v i d i n g s c r e e n i n g f o r ground l e v e l u n i t s near a s t r e e t or access route. t h i s s c r e e n i n g should be obtained p r i m a r i l y through l a n d s c a p i n g with f e n c i n g p r o v i d i n g a secondary screen. n.d.o. # the design should accommodate d e f e n s i b l e space methods to ensure a safe and secure environment. r a t i o n a l e : s e c u r i t y and crime p r e v e n t i o n i s an i s s u e i n e l d e r l y housing. through s i t e p l a n n i n g and b u i l d i n g design, an e n v i r o n - ment t h a t d i s c o u r a g e s crime can be c r e a t e d . t h i s should be achieved by: . l o c a t i n g indoor common areas adjacent to outdoor common spaces to improve mutual s e c u r i t y . . grouping d w e l l i n g u n i t s i n c l u s t e r s to enhance entrances s u r v e i l l a n c e of comings and goings. . designing fences and l a n d s c a p i n g t h a t a l l o w same views of the c l u s t e r s ( b u i l d i n g s ) and p r i v a t e open spaces from the s t r e e t . n.d.o. # the ccc development should provide a v a r i e t y of open spaces which w i l l serve the p u b l i c , r e s i d e n t s and the neighbourhood as a whole. the treatment of open space should c o n t r i b u t e to the neighbour- hood i d e n t i t y . r a t i o n a l e : the s u b j e c t s i t e i s a "green o a s i s " i n the p o i n t grey area and can be e a s i l y transformed i n t o medium d e n s i t y deve- lopment with s u f f i c i e n t p r o v i s i o n of open spaces. the northern p o r t i o n of the s i t e i s a l r e a d y an open p u b l i c grass-covered area with t r e e s t h a t c r e a t e an a t t r a c t i v e s t r e e t s c a p e and c o n t r i b u t e to neighbourhood i d e n t i t y . a p l e a s a n t , e a s i l y a c c e s s i b l e outdoor area i s an e s s e n t i a l p a r t of a r e s i d e n t i a l environment f o r the e l d e r l y who are l i k e l y to spend more time i n or near t h e i r homes than younger people. the outdoor area should permit r e s i d e n t s to walk about e a s i l y and c o n v e n i e n t l y and should provide s e v e r a l kinds of space c r e a t e d f o r d i f f e r e n t a c t i v i t i e s . n.d.o. # the ccc development should p r o v i d e l a n d s c a p i n g t h a t c r e a t e s v i s u a l i n t e r e s t and i d e n t i t y . r a t i o n a l e : there i s a s u b s t a n t i a l q u a n t i t y of deciduous t r e e s l o c a t e d i n the western p a r t of s i t e which provide a n a t u r a l b u f f e r zone from the adjacent j e r i c h o h i l l school p r o p e r t y and j u s t i c e i n s t i t u t e . along th avenue, there i s a green zone with deciduous t r e e s t h a t p r o v i d e s a b a r r i e r from the n o i s y th avenue. close to the i n t e r s e c t i o n of th ave., and highbury s t r e e t there i s a b e a u t i f u l a l l e y with many f e a t u r e t r e e s t h a t c r o s s the s i t e d i a g o n a l l y on the east-west a x i s . t h i s a l l e y i s a very important f e a t u r e of the s i t e t h a t should be preserved i n the f u t u r e development. throughout the whole s i t e , there are s c a t t e r e d c o n i f e r o u s and deciduous t r e e s and rows of t r e e s along e x i s t i n g t r a n s p o r t a t i o n r o u t e s . along th avenue, there i s a high shrub hedge and a row of deciduous t r e e s . . . conclusion the f a c i l i t y o b j e c t i v e s developed i n t h i s chapter have been e s t a b l i s h e d i n order to guide the program development i n the f o l l o w i n g chapters and . a l l these o b j e c t i v e s are i n s t r u - mental i n terms of s u c c e s s f u l o p e r a t i o n and management of the ccc f a c i l i t y . in summary, there are f i v e groups of o b j e c t i v e s : group l i v i n g environmental o b j e c t i v e s which address the i s s u e of a s a f e and q u a l i t y f a c i l i t y environment. group r e s i d e n t s ' o b j e c t i v e s which concentrate on three b a s i c i s s u e s : tenure c h o i c e , h e a l t h care and s o c i a l needs. group f a c i l i t y management o b j e c t i v e s which although emphasiz- i n g the importance of c e n t r a l i z a t i o n of s u p p o r t i v e s e r - v i c e s , n e v e r t h e l e s s s t r e s s a l s o the need f o r independ- ence, p e r s o n a l i z a t i o n and v a r i e d p h y s i c a l environment. group community o b j e c t i v e s e x p l a i n a need f o r s u c c e s s f u l and smooth r e l a t i o n s h i p between the ccc f a c i l i t y and the p o i n t grey community. group neighbourhood development o b j e c t i v e s are very important f o r the a r c h i t e c t u r a l concept of the ccc f a c i l i t y and have been presented i n the form of design g u i d e l i n e s . chapter - the ccc facility components chapter summary: chapter i s the p a r t of t h e s i s s y n t h e s i s and c o n c e n t r a t e s on f o u r major f u n c t i o n a l components of the continuum of care complex: r e s i d e n t i a l , long-term care, community s e r v i c e s and outdoor a c t i v i t y spaces. these components c o n s t i t u t e the e n t i r e spectrum of the cc environment and are i n s t r u m e n t a l to i t s q u a l i t y . introduction a q u a l i t y environment, which may c o n t r i b u t e to the e l d e r l y s s a t i s f a c t i o n and w e l l - b e i n g i s the major f a c t o r i n d e s i g n i n g a continuum of care complex. as p o i n t e d out i n chapter , there are s e v e r a l p h y s i c a l and s o c i a l c r i t e r i a , which may be used i n e v a l u a t i o n of the environmental q u a l i t y . the o p p o r t u n i t i e s f o r i n d i v i d u a l c h o i c e , an encouragement of s o c i a l i n t e r a c t i o n between r e s i d e n t s , s t i m u l a t i o n and p a r t i c i p a t i o n i n a c t i v i t i e s as w e l l as reinforcement of i n d i v i d u a l independence are j u s t the b a s i c o b j e c t i v e s i n f u l f i l l i n g the ccc r e s i d e n t s s a t i s f a c t i o n . the o p p o r t u n i t y f o r i n d i v i d u a l c h o i c e would be s a t i s f i e d g e n e r a l l y by p r o v i d i n g a v a r i e t y of environments which would permit the widest range of p e r s o n a l c h o i c e s . the most important c h o i c e would be a c h o i c e i n a v a r i e t y of l i v i n g arrangements. the ccc f a c i l i t y w i l l provide three tenure o p t i o n s . each o p t i o n would p r o v i d e f u r t h e r c h o i c e s i n terms of the type and s i z e of d w e l l i n g u n i t s . for those s e n i o r r e s i d e n t s who need h e a l t h care s e r v i c e s the continuum of care complex w i l l provide a choice i n a range of l i v i n g accommodations a c c o r d i n g to l e v e l s of dependence and a range of care s e r v i c e s i n the intermediate care (three l e v e l s ) and extended care f a c i l i t i e s . the core centre would be a key component i n the c r e a t i o n of the ccc q u a l i t y environment. the l i f e e n r i c h i n g resources would promote mental and s o c i a l i n t e r g r a t i o n i n the core centre - c u l t u r a l component. the l i f e s u s t a i n i n g resources i n the health centre would s a t i s f y r e s i d e n t s and the e l d e r l y l i v i n g i n the neighbourhood. however, the core centre would a l s o promote the o p p o r t u n i t y f o r s o c i a l c o n t a c t s and would enhance business i n t e g r a t i o n with the p o i n t grey community. s e v e r a l s e r v i c e s , programs and amenities would i n c r e a s e o p p o r t u n i t i e s f o r i n d i v i d u a l c h o i c e . the outdoor space program components would be the p r i n c i p a l elements i n the ccc environment. besides having t h e r a p e u t i c alue the outdoor spaces would c r e a t e a v a r i e t y of outdoor a c t i v i t i e s . t h i s component would a l s o promote p a r t i c i p a t i o n i n a l l i t s a c t i v i t i e s as w e l l as encourage s o c i a l c o n t a c t s between r e s i d e n t s and v i s i t o r s . . size of the facility is there an i d e a l number of e l d e r l y people, t h a t can be main- t a i n e d i n one continuum of care complex? in the united s t a t e s c o n t i n u i n g care r e t i r e m e n t communities house an average of - r e s i d e n t s , a p o p u l a t i o n range t h a t has proven economical- l y v i a b l e (green, , p. ). another study suggests t h a t : although there i s d i v i d e d o p i n i o n as to the number of e l d e r l y who may be c o n c e n t r a t e d i n t h e i r own neighbour- hood, up to housing u n i t s d i v i d e d i n t o c l u s t e r s of to i s a s c a l e to which most r e s i d e n t s can comfor- t a b l y r e l a t e . with l e s s than two persons per house- h o l d , the neighbourhood w i l l house a p o p u l a t i o n under ( z e l v e r , p. ). the s i z e of the ccc f a c i l i t y should be such t h a t i t does not c r e a t e an i s o l a t e d community of the e l d e r l y , but l a r g e enough to provide an economic v i a b i l i t y i n terms of b u i l d i n g s and s e r - v i c e s . however, the problem remains beyond the q u e s t i o n of a number of s e n i o r s i n a given space. a q u a l i t y environment, which c o n t r i b u t e s i n the f i r s t p l a c e to the e l d e r l y * s s a t i s f a c - t i o n and t h e i r w e l l - b e i n g would be another important f a c t o r i n d e s i g n i n g a continuum of care complex. . housing - independent living the o b j e c t i v e f o r choice of r e s i d e n t i a l tenure i n indepen- dent l i v i n g housing c o u l d be f u l f i l l e d by p r o v i d i n g three tenure o p t i o n s . the f i r s t one would be r e n t a l accommodation f o r the e l d e r l y who are unable to own t h e i r d w e l l i n g u n i t s . t h i s type of housing would be a v a i l a b l e to low income s e n i o r s l i v i n g i n r e n t a l apartments i n the west p o i n t grey area as w e l l as i n k i t s i l a n o , dunbar and k e r r i s d a l e . however, the program a l s o assumes other c h o i c e s : cooperative housing townhouses ( a s s i s t e d by funds from cmhc) f o r those with moderate income, but a c t i v e and w i l l i n g to p a r t i c i p a t e i n the c o o p e r a t i v e management; and a l s o s t r a t a - t i t l e d w e l l i n g u n i t s developed by the p r i v a t e s e c t o r . the l a s t o p t i o n c o u l d be o f f e r e d to more a f f l u e n t r e s i d e n t s of west p o i n t grey, adjacent dunbar and k e r r i s d a l e as w e l l as to those from m e t r o p o l i t a n vancouver and canada (see chapter ). there are advantages and disadvantages of each housing o p t i o n . (housing information for those approaching retirement, centre f o r c o n t i n u i n g e d u c t i o n , u.b.c. ; home s e l e c t i o n guide, nha cmhc, ) each housing type s a t i s f i e s d i f f e r e n t needs of the e l d e r l y : tabel - .--housing choices i n the ccc f a c i l i t y bchmc co-operative housing strata-title dw. units advantages low and moderate income - r e n t s are % of gross house- h o l d income. s e c u r i t y of tenure, s e c u r i t y of the ownership. o p p o r t u n i t y to change accomodation. housing charges are kept a t reasonable l e v e l . opportunity to p a r t i c i p a t e i n the management of the condo- minium. l i t t l e or no r e s - p o n s i b i l i t y f o r the maintenance. l i v e and s o c i a l i z e i n a community type s e t t i n g . more l i v i n g space s e r v i c e s and f a c i l i t i e s , b e t t e r f i n i s h m a t e r i a l s . no down-payment r e q u i r e d . occupants c o l l e c t - i v e l y own and manage the housing. opportunity to recover the i n v e s t e d money. table - .--housing choices i n the ccc f a c i l i t y (cont'd) bchmc co-operative housing strata-title dw. units advantages more freedom to be away. household/occupants purchase share -- money refunded when the occu- pant moves out. independence and freedom to pur- sue i n d i v i d u a l l i v e s t y l e . convenience of having f r i e n d s i n the same b u i l d i n g value has i n - creased over p a s t s e v e r a l years. disadvantages long w a i t i n g l i s t . members must comply with the r e g u l a t i o n s e s t a b l i s h e d by the c o o p e r a t i v e as a group. n e c e s s i t y to comply with con- dominium r e g u l a - t i o n s . no o p p o r t u n i t y to t u r n p a r t of your expenses i n t o i n - vestment. o b l i g a t i o n s to p a r t i - c i p a t e i n c o o p e r a t i v e a d m i n i s t r a t i o n . maintenance and improvements o u t s i d e the housing u n i t are s u b j e c t to d e c i - s i o n s by the board of d i - r e c t o r s . no s e c u r i t y of the ownership. no o p p o r t u n i t y to b u i l d up investment i n value of property. costs: h i g h e r than co-ops. % wheelchair acces- s i b l e u n i t s only. higher monthly mortgage payments than f o r r e n t - a l housing long-term f i n a n - c i a l commitment. less l i v i n g space amenities than i n co-op and s t r a t a - t i t l e . long-term f i n a n c i a l commitment or l a r g e downpayment. r e l a t i v e l y l e s s freedom to move than with r e n t a l housing n e c e s s i t y to buy shares. . . bchmc housing - non-profit rental housing to s a t i s f y the needs of the f i r s t group of p o t e n t i a l r e s i - dents the ccc f a c i l i t y c o u l d provide independent l i v i n g u n i t s w i t h i n the n o n - p r o f i t housing program of the bchmc. the o b j e c t i v e of t h a t program i s the development of modest housing p r o j e c t s f o r needy people b u i l t i n accordance with bchmc s p e c i f i c a t i o n s , a l l a p p l i c a b l e b u i l d i n g codes, m u n i c i p a l by-laws and r e g u l a t i o n s . at present the program covers both s e n i o r c i t i z e n s and f a m i l y housing p r o j e c t s , i n c l u d i n g a s s o c i a t e d u n i t s f o r the d i s a b l e d . the subsidy a v a i l a b l e under the program i s designed to cover the d i f f e r e n c e between the break-even r e n t f o r the p r o j e c t and the tenant r e n t c o n t r i b u t i o n based on % of household income. a f t e r completion of c o n s t r u c t i o n , the subsidy i s p a i d d i r e c t l y to a sponsoring housing s o c i e t y by the b.c. housing management commission on b e h a l f of the f e d e r a l and p r o v i n c i a l governments. a c c o r d i n g to the development c r i t e r i a the sponsor of such a p r o j e c t must be a n o n - p r o f i t housing s o c i e t y , which plans to develop a s o c i a l housing p r o j e c t and make a long term commitment to the e f f i c i e n t management of the f a c i l i t y . bchmcs data (on j u l y th, ) i n d i c a t e t h a t there i s a g r e a t demand f o r s u b s i d i z e d housing. in vancouver, there are persons years o l d and over on the w a i t i n g l i s t ( persons i n the west side of vancouver). f i v e per cent of them are l i v i n g i n very poor c o n d i t i o n s . thus, we can assume t h a t the ccc f a c i l i t y might provide up to u n i t s of r e n t a l housing a c c o r d i n g to the bchmc design g u i d e l i n e s i n d i c a t i n g t h i s s i z e of development as the most economical from the f i n a n c i a l , p r o p e r t y and management, and maintenance p o i n t of view (bcmhc p r o p o s a l c a l l - blue book, p. ). . . . co-operative housing co-operative housing i s becoming a popular way to s a t i s f y the e l d e r l y * s housing needs. i t p r o v i d e s f o r user p a r t i c i p a t i o n i n s e v e r a l committees, board of d i r e c t o r s and permits them to i n f l u e n c e the a f f a i r s of the co-op. in a d d i t i o n i t p r o v i d e s n o n - p r o f i t , c o s t e f f i c i e n t housing. in there were only s i x co-op housing p r o j e c t s f o r s e n i o r s i n canada. by there were and today there are , o f f e r i n g , u n i t s (the c o u r i e r , a p r i l , ). an a l t e r n a t i v e o p t i o n of independent l i v i n g housing c o u l d be a new form of a n o n - p r o f i t housing c o - o p e r a t i v e f o r s e n i o r c i t i z e n s r e c e n t l y developed i n b.c. by the columbia housing a d v i s o r y a s s o c i a t i o n . t h i s type of housing co-op doesn't r e - q u i r e government s u b s i d i e s (see chapter - r e s i d e n t i a l o b j e c t i v e s ) . instead, members purchase shares which amount to a t l e a s t % of the c o s t of t h e i r u n i t s . monthly housing charges are based on the mortgage and o p e r a t i n g c o s t s per u n i t . t h i s o p t i o n c o u l d be o f f e r e d to people who s o l d t h e i r f a m i l y houses and are l o o k i n g f o r s m a l l e r , more manageable d w e l l i n g u n i t s . a c c o r d i n g to t h e i r experience i n management of e x i s t i n g s e n i o r s ' co-ops, columbia housing a d v i s o r y a s s o c i a t i o n suggests the number of - u n i t s as the most a p p r o p r i a t e s i z e of the co-op. in the ccc c o o p e r a t i v e housing, there would be u n i t s grouped i n - c l u s t e r s , c r e a t i n g the s c a l e of the c l u s t e r to which most e l d e r l y r e s i d e n t s may comfortably r e l a t e (alexander , p. ). . . strata-title housing (condominium) the term condominium r e f e r s to e x c l u s i v e ownership of one housing u n i t i n a housing p r o j e c t and co-ownership of a f r a c t i o n of common space and amenities. the monthly payment covers the mortgage, taxes and maintenance c o s t . a c c o r d i n g to the condo- minium act, there s h a l l be a c o u n c i l e l e c t e d a n n u a l l y from the members. the c o u n c i l has power to a c t f o r the group as a whole. however, the members are r e l e a s e d from the r e s p o n s i b i - l i t y of management of the p r o j e c t . the c o u n c i l h i r e s the manager. although the members have c o n t r o l over t h e i r u n i t s they are l e s s i n v o l v e d i n the o p e r a t i o n of the p r o j e c t i n comparison with co-op housing where involvement i n common a f f a i r s i s mandatory. a c c o r d i n g to the homes n a t i o n a l survey on housing market c h a r a c t e r i s t i c s and demand, (berger, godin, and harvey ) one of f o u r canadians between and years of age i s a p o t e n t i a l homebuyer. the r e g i o n showing the most a c t i v e market i s b r i t i s h columbia. there, twenty seven percent of the popula- t i o n i n the plus age group are i n t e r e s t e d i n buying a home. the survey has shown t h a t although the p r e f e r e d housing type by the m a j o r i t y of canadians ( %) was a s i n g l e detached house, the second p r e f e r e n c e was apartment-condominium ( %) and townhouse condominium ( % ) . moreover, f o u r percent of respondents s a i d they would s e r i o u s l y c o n s i d e r , and % s a i d they would somewhat s e r i o u s l y c o n s i d e r buying a condominium (berger, godin and harvey, , p. ). we can assume t h a t there c o u l d be a demand f o r purchasing condominiums i n the ccc f a c i l i t y . s i m i l a r l y to the c o o p e r a t i v e housing, the condominium c l u s t e r s w i l l be comprised of d w e l l i n g u n i t s . since the v a r i e t y of housing o p t i o n s w i l l be addressed to v a r i o u s needs of the e l d e r l y , the p o t e n t i a l r e s i d e n t s of the ccc w i l l have f l e x i b i l i t y of c h o i c e and o p p o r t u n i t y w i t h i n t h e i r means to l i v e as they wish. in a d d i t i o n , a l l three types of housing - s o c i a l housing (standard u n i t s , a f f o r d a b l e r e n t ) , c o o p e r a t i v e housing ( a f f o r d a b l e mortgage, more space) and p r i v a t e housing (higher q u a l i t y , more space) - w i l l adopt a p r o s t h e t i c approach to design by p r o v i d i n g environmental support to encourage independence of s e n i o r r e s i d e n t s (see chapter , l.e.o. # , , ). . . services in the independent living housing the types of s e r v i c e s p r o v i d e d i n e l d e r l y housing w i l l vary, depending on the l e v e l of dependence of r e s i d e n t s . in indepen- dent l i v i n g , where the l e v e l of dependency i s "very low", the e l d e r l y w i l l l i v e independently with only minimal support. s e r v i c e s such as t r a n s p o r t a t i o n , s o c i a l events, or r e c r e a t i o n a l a c t i v i t i e s c o u l d be mainly a v a i l a b l e i n the c e n t r a l p a r t of ccc core centre or outdoor a c t i v i t y centre. in the supported independent l i v i n g where the l e v e l of dependence i s "moderate low", s o c i a l s e r v i c e s w i l l be mostly r e q u i r e d . the r e s i d e n t s may be l o o k i n g f o r i n f o r m a t i o n , and a p l e a s a n t atmosphere. when the l e v e l of dependence changes to "moderate", p e r s o n a l s e r v i c e s as w e l l as s o c i a l s e r v i c e s w i l l be r e q u i r e d such as: c o u n s e l l i n g , house-keeping ( c l e a n i n g , minor house r e p a i r s ) , meals-on-wheels or wheels-to-meals, s e c u r i t y checks, t e l e c a r e , day care or f r i e n d l y v i s i t i n g and -hour s e c u r i t y . t h i s k i n d of s e r v i c e s c o u l d be provided by the home support and home care from the core centre component. a l s o , the s o c i a l p l a n n i n g s t a f f from the core centre may provide a v a r i e t y of r e c r e a t i o n a l a c t i v - i t y programs i n the common areas or may organize t r i p s away f o r shopping, d i n i n g or c u l t u r a l events. . housing for persons requiring long term care the second major component of the continuum of care complex c o u l d be long term care f a c i l i t i e s i n c l u d i n g intermediate care (three l e v e l s ) , and the extended care. long-term care i s the p r o v i s i o n of organized s e r v i c e s to a person with a c h r o n i c d i s a b i l i t y over a prolonged p e r i o d of time. the goal i s to a t t a i n and maintain an optimal l e v e l of f u n c t i o n i n g i n the p a t i e n t . i t i n c l u d e s s e r v i c e s f o r p a t i e n t s i n i n s t i t u t i o n a l and home s e t t i n g s (report of cma, ). at present, there i s a sharp d i v i s i o n between care i n the community and care i n the i n s t i t u t i o n ; indeed, s e r v i c e s are g e n e r a l l y fragmented. a c c o r d i n g to the report of the cma, "the p r o v i s i o n of a continuum of care, with the v a r i o u s elements b l e n d i n g together, should be the u n d e r l y i n g p r i n c i p l e i n plann- i n g s e r v i c e s f o r the e l d e r l y " . the continuum of care complex w i l l provide a comprehensive and c o o r d i n a t e d system of care ranging from home support and home care to treatment i n i n t e r - mediate care and extended care f a c i l i t i e s . the ccc w i l l be a m u l t i - l e v e l c e n t r e with g r a d u a t i o n of care organized and d e l i v e r - ed i n one s e t t i n g . moreover, there w i l l be the day/night care, r e s p i t e care and h o l i d a y / v a c a t i o n care f o r the e l d e r l y who are l i v i n g i n the neighbourhood. . . intermediate care; the three l e v e l intermediate care f a c i l i t y w i l l p r o v i d e s e r v i c e s f o r f r a i l e l d e r l y people who have l i m i t e d m o b i l i t y and whose l e v e l of dependency i s "moderate high". t h e r e f o r e , a l l spaces w i l l be handicap a c c e s s i b l e and a v a r i e t y of s e r v i c e s may be o f f e r e d to i t s r e s i d e n t s . g e n e r a l l y , a l l three l e v e l s c o u l d provide the b a s i c types of s e r v i c e s : p e r s o n a l , s o c i a l , and h e a l t h care s e r v i c e s . intermediate care l e v e l i r e c o g n i z e s the i n d i v i d u a l who r e q u i r e s moderate a s s i s t a n c e with the a c t i v i t i e s of d a i l y l i v i n g and minimal p r o f e s s i o n a l care and s u p e r v i s i o n . the focus i s on r e a c t i v a t i o n and maintenance program with medical and p r o f e s - s i o n a l n u r s i n g s u p e r v i s i o n . the program c o u l d encourage and maintain independence i n the a c t i v i t i e s of d a i l y l i v i n g , and a l s o c o u l d meet the p s y c h o - s o c i a l needs of r e s i d e n t s . r e a c t i v a - t i o n i m p l i e s s t i m u l a t i o n of the r e s i d e n t s so t h a t p h y s i c a l , mental and s o c i a l a b i l i t i e s are brought to the optimum l e v e l and maintained. p e r s o n a l s e r v i c e s p r o v i d e d at t h i s l e v e l : s u p e r v i s i o n ; p e r s o n a l care eg: p e r s o n a l grooming, hygiene, p o d i a t r y , housekeeping and p e r s o n a l laundry; three meals per day; c o u n s e l l i n g . s o c i a l s e r v i c e s p r o v i d e d a t t h i s l e v e l : a c t i v a t i o n program; s o c i a l and r e c r e a t i o n a l programs as d e s i r e d ; health care s e r v i c e s : b a s i c n u r s i n g s e r v i c e s approximately - hours per r e s i d e n t / d a y ; c o n s u l t a t i o n ; three months drug review; annual p h y s i c a l examination; medication a d m i n i s t r a t i o n ; intermediate care l e v e l s i i and i i i provide p e r s o n a l and s o c i a l s e r v i c e s s i m i l a r to s e r v i c e s a v a i l a b l e on l e v e l i with added o p t i o n s such as: f u l l d i e t a r y s e r v i c e s ; a s s i s t a n c e with f i n a n c i a l matters; i l l needed s u p e r v i s i o n ; emotional or b e h a v i o r a l c o n d i t i o n support; the h e a l t h care s e r v i c e s at t h i s l e v e l s c o u l d i n c l u d e : medications a d m i n i s t e r e d by a r e g i s t e r e d nurse; part-time c o n s u l t a n t physiotherapy and o c c u p a t i o n a l therapy, d a i l y o b s e r v a t i o n s ; constant s u p e r v i s i o n r e q u i r e d due to d i s o r i e n t a t i o n of the r e s i d e n t s ; other s e r v i c e s a v a i l a b l e as may be r e q u i r e d ; (community care f a c i l i t y act, ) ( m i n i s t r y of health long term care program, p o l i c y manual, ). . . extended care extended care d i f f e r s from intermediate care because p h y s i c a l , mental or emotional c o n d i t i o n s of r e s i d e n t - p a t i e n t r e q u i r e ongoing assessment and i n t e r v e n t i o n by a l l d i s c i p l i n e s (e.g. n u r s i n g , d i e t a r y and m e d i c a l ) . the extended care f a c i l i t y c o u l d serve the e l d e r l y with a "high l e v e l " of dependence who r e q u i r e p r o f e s s i o n a l n u r s i n g s e r v i c e s on a twenty-four hour b a s i s and r e g u l a r continuous medical s u p e r v i s i o n . however, extended care does not r e q u i r e a l l the resources of an acute care h o s p i t a l (bchp extended care design g u i d e l i n e s ). s e r v i c e s provided i n the extended care f a c i l i t y c o u l d i n c l u d e h e a l t h care and p e r s o n a l s e r v i c e s . s o c i a l s e r v i c e s w i l l depend on the p h y s i c a l c o n d i t i o n of r e s i d e n t s . the extended care l e v e l c o u l d p r o v i d e : d a i l y help with grooming, t o i l e t i n g , m o b i l i t y ; d a i l y treatments as may be r e q u i r e d ; medication a d m i n i s t e r e d by a r e g i s t e r e d nurse; t h e r a p e u t i c s e r v i c e s : physiotherapy, o c c u p a t i o n a l therapy and speech therapy. s p e c i a l d i e t mechanical a i d s f o r r e s i d e n t care eg: mechanical l i f t s or high-low beds, as w e l l as s p e c i a l i z e d t h e r a p e u t i c a i d s ; help and a s s i s t a n c e i n emotional or b e h a v i o r a l problems; the major program d i f f e r e n c e s among the long-term care f a c i l i - t i e s are s i g n i f i c a n t i n terms of the s p e c i a l requirements and the provided s e r v i c e s . since the l e v e l of dependence of the e l d e r l y grows a c c o r d i n g to t h e i r gradual p h y s i c a l and emotional l o s s e s , consequently there i s a n e c e s s i t y to provide a v a r i e t y of care l e v e l s . however, most o l d e r people do not f i t n e a t l y i n t o any p a r t i c u l a r order of s e r v i c e s ; o n l y a few r e q u i r e a l l a v a i l a b l e s e r v i c e s . most e l d e r l y may need one p a r t i c u l a r s e r - v i c e one day and d i f f e r e n t mix of s e r v i c e s the next day. the continuum of care complex may meet these d i v e r s e and changing needs through a network of d i f f e r e n t s e r v i c e s a v a i l a b l e a t a l l times i n one p l a c e . . . . the number of long term care beds at p r e s e n t there i s no answer to the q u e s t i o n "what i s the r i g h t mix of r e s i d e n t s i n m u l t i - l e v e l care f a c i l i t i e s and continuum of care retirement communities (ccrcs)?" researchers do not know the extent to which continued i n t e r a c t i o n s between ccrc n u r s i n g home r e s i d e n t s and independent l i v i n g u n i t r e s i d e n t s a f f e c t the l i f e s a t i s f a c t i o n of each group (gutman, ). for example, i n seton v i l l a -- a m u l t i - l e v e l care f a c i l i t y i n burnaby b.c. the " l i g h t " or "heavy" p e r s o n a l care beds (intermediate care l e v e l ) represented % of r e s i d e n t s only. the remainder l i v e d i n s e l f - c o n t a i n e d and b o a r d - r e s i d e n t s u n i t s and were e s s e n t i a l l y independent. " t h i s mix seemed to work w e l l . " (gutman , p. ) another example i s the northwood complex i n h a l i f a x , n.s. the f a c i l i t y accomodates o l d e r people i n v a r i o u s l i v i n g arrangement from " s e l f - c o n t a i n e d " apartments through to "nurs- i n g " care. there are independent s e l f contained apartments o n l y ( % r e s i d e n t s i n one bedroom and b a c h e l o r a p t s . ) . the r e s t ( %) of "care" beds o f f e r p r o g r e s s i v e stages or l e v e l s of care made up of " s u p e r v i s o r y " care beds, " p e r s o n a l " care beds, " n u r s i n g " care beds. although the northwood complex i s very b i g and "there are those who b e l i e v e i t has grown too l a r g e ..", there i n no i n d i c a t i o n t h a t there i s not a r i g h t mix among the l e v e l s of care. on the c o n t r a r y , f o r many, the complex i s a model of e x c e l l e n c e f o r the province and the country (rogers ). a c c o r d i n g to gutman ( ) p o s i t i v e a t t i t u d e s towards mixing between l e v e l s i n m u l t i - l e v e l complexes or ccrcs are dependent a l s o on management p r a c t i c e s , p o l i c i e s and enthusiasm. in vancouver, there i s a need f o r long term care f a c i l i t i e s (see chapter , f i g - , - ). the t o t a l number of w a i t l i s t e d r e s i d e n t s f o r intermediate care f a c i l i t i e s i n was and f o r extended care f a c i l i t i e s (vancouver health department annual report ). based on the above data t h i s program assumes t h a t the ccc should provide mainly intermediate care ( beds) with c l u s t e r of extended care ( beds). . the core centre the core centre would c r e a t e a major focus of a c t i v i t i e s w i t h i n the ccc and would serve as l i a s o n between a l l l e v e l s of care w i t h i n the f a c i l i t y and the community at l a r g e . t h i s f a c i l i t y component would c r e a t e an i n f o r m a l community network of f r i e n d s and r e l a t i v e s , would provide l i f e s u s t a i n i n g and l i f e e n r i c h i n g r e s o u r c e s f o r the r e s i d e n t s as w e l l as o l d e r people from the p o i n t grey neighbourhood and would enhance business i n t e g r a t i o n with the e n t i r e community. for the r e s i d e n t s , the core centre w i l l be a p l a c e where they may spend time inexpen- s i v e l y and p r o f i t a b l y . i t may generate f r i e n d s , o p p o r t u n i t i e s f o r p e r s o n a l growth and c o n t a c t with the community and "ongoing- ness" of l i f e . i t may a l s o be a p l a c e j u s t to go and watch when d e c l i n i n g p h y s i c a l v i g o r no longer makes p a r t i c i p a t i o n p o s s i b l e . in keeping with the ccc f a c i l i t y o b j e c t i v e s the core centre w i l l c e n t r a l i z e a number of s e r v i c e s . there would be c e n t r a l a d m i n i s t r a t i o n , food s e r v i c e s , laundry s e r v i c e s , m a t e r i a l s , supply b u i l d i n g and p l a n t s e r v i c e s as w e l l as c e n t r a l s o c i a l and h e a l t h s e r v i c e s . however, o n l y a few of the major core centre components w i l l e x c l u s i v e l y serve the ccc f a c i l i t y r e s i d e n t s . there w i l l be s e v e r a l components which would provide s e r v i c e s f o r the r e s i d e n t s as w e l l as f o r the v i s i t o r s from the communi- t y . for example, the core centre components, which provide s o c i a l and h e a l t h care s e r v i c e s such as the auditorium and s p e c i a l programs, a r t s and c r a f t s , l i b r a r y , r e h a b i l i t a t i o n centre with f i t n e s s c l u b and swimming pool and food f a i r can be o r g a n i z e d under the auspices of the s e n i o r centre. the s e n i o r centre may p l a y i t s unique r o l e i n the p o i n t grey community by p r o v i d i n g f o r s o c i a l , p h y s i c a l and i n t e l l e c t u a l needs of o l d e r people. i t may s t i m u l a t e , maintain and deepen a "sense of t h a t community" as w e l l as may provide o p p o r t u n i t i e s f o r people to give t h e i r time i n v o l u n t e e r s e r v i c e . the s e n i o r centre may be run by the ccc r e s i d e n t s and members from the community with support of the p r o f e s s i o n a l s t a f f . we assume a t t h i s stage t h a t a d u l t s years of age and over w i l l be e l i g i b l e f o r membership i n the ccc s e n i o r a s s o c i a t i o n . a membership may e n t i t l e a person to take p a r t i n c o u n c i l sponsored a c t i v i t i e s and to take advantage of other programs and s e r v i c e s o f f e r e d w i t h i n the core centre. . . . core centre component i - life enriching resources - cultural centre as a l r e a d y mentioned i n chapter , there i s an urgent need to expand the e x i s t i n g brock house s e n i o r c i t i z e n centre with more comprehensive programs and a wider range of amenities. brock house p l a y s a s i g n i f i c a n t r o l e i n the p o i n t grey community by p r o v i d i n g a v a r i e t y of s o c i a l and e d u c a t i o n a l programs f o r members. however, there i s no adequate space to accom- modate b i g g e r group meetings, c u l t u r a l events, s e v e r a l a r t s & c r a f t s a c t i v i t i e s , outdoor r e c r e a t i o n a l a c t i v i t i e s , h e a l t h and r e h a b i l i t a t i o n programs and h e a l t h s e r v i c e s as w e l l as a day care program. the core centre may respond to those needs by p r o v i d i n g v a r i o u s l i f e e n r i c h i n g r e s o u r c e s . the major component would be the auditorium and programs, which would i n c l u d e a seat theatre and a couple of seminar and meeting rooms. l e c t u r e s , movies, c o n c e r t s , s p e c i a l c u l t u r a l events, music and drama c l u b , c l a s s e s f o r a d u l t education and other programs would be o f f e r e d to the ccc r e s i d e n t s and to the whole community. t h i s component w i l l c o u l d a l s o provide an o p p o r t u n i t y f o r many s o c i a l a c t i v i t i e s such as: b r i d g e , bingo, t r i p s , s i n g along, t o a s t - masters e t c . then, there would be the a r t s and c r a f t s component p r o v i d i n g an o p p o r t u n i t y f o r p e r s o n a l e x p r e s s i o n , d e v e l o p i n g c r e a t i v i t y and s o c i a l , i n t e r a c t i o n . within t h i s component a number of workshops would be o f f e r e d such as: woodwork p a i n t i n g , dyeing, weaving and p o t t e r y . the l i b r a r y , with r e a d i n g and l i s t e n i n g rooms, c o u l d be f o r those who p r e f e r r e a d i n g , l i s t e n i n g to music or l e a r n i n g a new language i n t h e i r l e a s u r e time. for the youngest and more a c t i v e e l d e r l y , the core centre w i l l p r o v i d e outdoor r e c r e a t i o n a l a c t i v i t i e s i n the v a r i o u s c l u b s such as bowling, m i n i - g o l f , croquet and gardening. . . . core centre component i i - life sustaining resources - health centre the core centre would a l s o provide l i f e s u s t a i n i n g r e s o u r - ces. the most sought component would be the r e h a b i l i t a t i o n centre which may be i n s t r u m e n t a l i n developing a community s p i r i t and would provide h e a l t h care s e r v i c e s . the r e h a b i l i t a - t i o n centre would c o n s i s t of treatment u n i t s p r o v i d i n g physio- therapy and speech pathology s e r v i c e s . f i t n e s s and dancing club would provide e x e r c i s e and k i n e s t h e r a p y s e r v i c e s , while a l a r g e swimming pool with sauna c o u l d become the most a t t r a c t i v e p l a c e i n the core centre. another important component would be the m e d i c a l c l i n i c p r o v i d i n g medical, d e n t a l and c o u n s e l i n g s e r - v i c e s . t h i s component may enhance business i n t e g r a t i o n with the p o i n t grey community s i n c e i t may serve not o n l y the ccc r e s i d e n t s but a l s o the e l d e r l y from the community. the next component, pharmacy, would serve the long-term care f a c i l i t i e s and dispense pharmaceutical s u p p l i e s to t h e i r r e s i d e n t s and the customers from the community. and l a s t , but not l e a s t , a s e n i o r s ' day care program would o f f e r a wide range of a c t i v i t i e s and programs to the r e s i d e n t s and o l d e r a d u l t s l i v i n g i n the community who r e q u i r e support to maintain an independent l i f e s t y l e . . . . core centre component i i i - social interaction and business integration the t h i r d group of f u n c t i o n a l components i n the core centre would c r e a t e an o p p o r t u n i t y f o r i n f o r m a l community network of f r i e n d s and r e l a t i v e s . an o p p o r t u n i t y f o r s o c i a l i n t e g r a t i o n c o u l d be c r e a t e d by p r o v i d i n g f a c i l i t i e s such as: r e s t a u r a n t , c o f f e e - s h o p and bar. designed as a "food f a i r " , t h i s component may become a magnet f o r a l l the r e s i d e n t s and t h e i r v i s i t o r s . other f a c i l i t i e s , which may add to an o p p o r t u n i t y f o r s o c i a l c o n t a c t s and may enhance business i n t e g r a t i o n with the community would be as f o l l o w s : a winter garden with o c c a s i o n a l a r t e x h i b i - t i o n s , a beauty s a l o n and a h a i r d r e s s e r , a bank and s m a l l r e t a i l o u t l e t s . . . . supporting and maintenance components the f o u r t h group of the core centre components w i l l serve the ccc f a c i l i t y only. there w i l l be laundry, m a t e r i a l s e r v i c e s , b u i l d i n g s e r v i c e s , p l a n t s e r v i c e s as w e l l as a d m i n i s t r a t i o n and s t a f f support components. . . outdoor spaces the outdoor landscape should be c o n s i d e r e d as the p r i n c i p a l element i n c r e a t i n g a s u c c e s s f u l environment f o r the e l d e r l y , because i t has great t h e r a p e u t i c value b e s i d e s enjoyment and p l e a s u r e . for most people, nature holds deep meaning: i t i s a p l a c e of refuge, peace and t r a n q u i l i t y , and symbol of l i f e and growth. research f i n d i n g s support the i d e a t h a t people gain a g r e a t d e a l of p l e a s u r e from c o n t a c t with nature. moreover, the b e n e f i t s gained from n a t u r a l scenes go beyond simple p l e a s u r e . recent r e s e a r c h has proved ( r e i n z e n s t e i n carpman ) t h a t the landscape has t h e r a p e u t i c s i g n i f i c a n c e . the s t u d i e s suggest t h a t the a v a i l a b i l i t y of nature, the form of views from windows as w e l l as a c c e s s i b l e outdoor spaces, can be r e s t o r a t i v e . many e l d e r l y are under s t r e s s . r e i z e n s t e i n s a i d t h a t : a c c o r d i n g to one r e s e a r c h e r , i f an i n d i v i d u a l i s s t r e s s - ed, viewing an a t t r a c t i v e n a t u r a l scene w i l l be sooth- i n g because i t can e l i c i t f e e l i n g s of p l e a s a n t n e s s , h o l d i n t e r e s t , and block or reduce s t r e s s f u l thoughts ( r e i z e n s t e i n carpman , p. ). many o l d e r people i n the ccc e i t h e r by c h o i c e or p h y s i c a l l i m i t a - t i o n may spend most of t h e i r time i n t h e i r d w e l l i n g u n i t s . pro- v i s i o n of outdoor landscaped spaces i n form of p r i v a t e p a t i o s or b a l c o n i e s and a view to outdoor common a c t i v i t y areas c o u l d be very s t i m u l a t i n g and a p p e a l i n g f o r the e l d e r l y . outdoor spaces provide a change of environment c l o s e a t hand, an area to grow flowers and p e r s o n a l i z e , and they can p e r c e p t u a l l y i n c r e a s e the s i z e of l i v i n g space. they o f f e r immediate access to f r e s h a i r which i s important f o r some tenants with r e s p i r a t o r y problems. in a d d i t i o n , outdoor extensions of p a t i o s can provide secure and p r o t e c t e d environments f o r c a s u a l s o c i a l i z i n g with others ( z e i s e l , p. ). . . . outdoor space components the outdoor areas would c o n s i s t of p r i v a t e outdoor spaces and common a c t i v i t y areas. the p r i v a t e outdoor areas would be p a r t of each independent l i v i n g c l u s t e r , as w e l l as each long term care r e s i d e n t i a l c l u s t e r , i n the form of p r i v a t e yards/ p a t i o s , porches or b a l c o n i e s . these p r i v a t e spaces w i l l : p r o t e c t the d w e l l i n g as a secure t e r r i t o r y , p r o v i d e outdoor extensions f o r expanding l i v i n g spaces i n seasonable weather, and provide an i n t e r m e d i a t e zone between p u b l i c and p r i v a t e which allows s o c i a l , n e i g h b o u r l y c o n t a c t s to be c a s u a l l y made (shack , p. ) . the ccc common outdoor spaces would i n c l u d e two types of areas. f i r s t l y , the common outdoor space would be i n t e r l o c k e d with p r i v a t e outdoor spaces i n the r e s i d e n t i a l c l u s t e r s i n the form of a common garden, c e n t r a l pathway or a "gateway" gazebo. secondly, f o u r f u n c t i o n a l components, the country club, the r e h a b i l i t a t i o n outdoor areas, the garden centre and park would c r e a t e the ccc community outdoor a c t i v i t y center. that outdoor a c t i v i t y centre would be l o c a t e d adjacent to the core centre and along the pathway l e a d i n g to the core centre. the outdoor common area would be designed to i n c r e a s e o p p o r t u n i t i e s f o r i n d i v i d u a l choice and to accomodate three types of a c t i v i t i e s : . p a s s i v e areas: p l a c e s which permit s o l i t u d e ( r e t r e a t ) and those p l a c e s which w i l l o f f e r an o p p o r t u n i t y f o r watching the a c t i v i t i e s of o t h e r s . . a c t i v e areas: these areas w i l l o f f e r a range of r e c r e a t i o - n a l a c t i v i t i e s such as m i n i - g o l f , croquet, bowling, v o l l e y - b a l l , gardening, s o c i a l g a t h e r i n g i n the p i c n i c and bbq areas or i n the outdoor theatre designed f o r s p e c i a l c u l t u r a l events. . connecting areas such as park with walkways would l i n k the above noted two groups. for more a c t i v e r e s i d e n t s the e x i s t i n g j e r i c h o park and a l l i t s amenities c o u l d be a v a i l a b l e through the proposed overpass above th ave. the outdoor a c t i v i t y centre w i l l p l a y a s i g n i f i c a n t r o l e i n c r e a t i n g the ccc s p e c i a l environment. f i r s t of a l l , i t would be a p l a c e where the most a c t i v e r e s i d e n t s of the independent l i v i n g u n i t s c o u l d spend t h e i r l e i s u r e time t a k i n g advantage of vancouver's m i l d c l i m a t e and garden s e t t i n g . secondly, i t would be a very s t i m u l a t i n g area f o r those r e s i d e n t s who can not any more take an a c t i v e p a r t i n the r e c r e a t i o n a l a c t i v i t i e s but s t i l l are w i l l i n g to observe games and share enjoyment with t h e i r peers. t h i r d l y , the country club component by p r o v i d i n g many play/game c o u r t s , may be a p p e a l i n g to a d u l t s from the whole neighbourhood. thus, i t may c r e a t e an o p p o r t u n i t y f o r s o c i a l i n t e g r a t i o n with a r e l a t i v e l y younger g e n e r a t i o n . . conclusion in c o n c l u s i o n , a l l f o u r major f a c i l i t y components: independ- ent l i v i n g housing, long term care f a c i l i t i e s , the core centre and the outdoor spaces w i l l c r e a t e a s p e c i a l , continuum of care enviroment f o r the e l d e r l y . however, the core centre and outdoor spaces may c o n t r i b u t e to the unique atmosphere of the ccc, which may enhance the r e s i d e n t s d i g n i t y , support t h e i r independence and encourage t h e i r involvement i n community a f f a i r s . the core centre w i l l embrace three d i f f e r e n t hubs: . the "health centre" with the c l i n i c , r e h a b i l i t a t i o n and pharmacy which would serve the e l d e r l y to support t h e i r p h y s i c a l l o s s e s . . the " c u l t u r a l centre" with the auditorium, a r t s and c r a f t s , and l i b r a r y which would s a t i s f y t h e i r c u l t u r a l needs and . the " l e i s u r e centre" with the outdoor a c t i v i t y centre, food f a i r , winter garden, swimming pool, dancing and f i t n e s s and other s o c i a l c l u b s . the core centre with i t s outdoor a c t i v i t y c l u b s may become an a t t r a c t i o n not o n l y f o r the whole neighbourhood but a l s o f o r the e l d e r l y from the west side of vancouver. ©•••©•••o«ooo • • • uvin&- cluster. • . outpoor. spaces a t o o o o o care cluster. outdoor. spaces jf«®» c a r e - ™ cluster. outdoor. s p a c e s l e & e k d • •••• ma" £ pedestrian circulation m a ^ o r . service access m a j o r vehicular access envi ron mental or. secufe-uv coktrol f i g . - access and c o n t r o l model of the ccc f a c i l i t y . chapter -- general program requirements chapter summary chapter i s the t h e s i s s y n t h e s i s and c o n s i s t s of the ccc f a c i l i t y program. the c l a s s i f i c a t i o n system, which has been adopted to develop the program f o l l o w s a f u n c t i o n a l model. a l l f a c i l i t i e s belong to one of f o u r major f a c i l i t y components de- s c r i b e d i n chapter . the l a r g e s t e n t i t y i s the continuum of care complex. within i t , there are f o u r major f a c i l i t y compo- nents: r e s i d e n t i a l independent l i v i n g , r e s i d e n t i a l dependent l i v i n g , core centre and common outdoor spaces. within each f a c i l i t y component, there are s e v e r a l program components and a c t i v i t y c e n t r e s . . . residential housing - independent living cluster . . f u n c t i o n a l components in keeping with the o b j e c t i v e s of the p r o j e c t , housing u n i t s w i l l emulate to the g r e a t e s t p o s s i b l e extent a normal, indepen- dent l i v i n g environment. the u n i t s w i l l c o n t a i n spaces s i m i l a r to those found i n other community housing and w i l l conform to the design c r i t e r i a of the bcmhc and cmhc. as p o i n t e d out i n chapter , the independent l i v i n g c l u s t e r w i l l be comprised of three types of housing: rental housing (bcmhc program), cooperative housing (cmhc program) and s t r a t a - t i t l e condominiums (market housing). the number, r a t i o and s i z e of u n i t s i n the s o c i a l r e n t a l housing (bchmc) w i l l conform to the requirements of the bcmhc design g u i d e l i n e s f o r s e n i o r s ' housing. the s i z e and r a t i o of u n i t s i n the co-op housing and s t r a t a t i t l e was d e r i v e d from the a n a l y s i s of comparative data of s e l e c t e d examples of e x i s t i n g e l d e r l y housing developments i n three groups: . co-operative housing f o r the e l d e r l y . . independent l i v i n g d w e l l i n g u n i t s i n the m u l t i - l e v e l f a c i l i t i e s . . r e c e n t l y b u i l t condominiuums f o r the e l d e r l y people i n the p o i n t grey area (see appx. - ). i t was a l s o acknowledged t h a t c u r r e n t housing demands and p r e f e r - ences of middle to h i g h e r income o l d e r persons d i f f e r from expec- t a t i o n s of e l d e r l y i n the 's. for example, evidence gathered by l a v e n t h a l and horwath ( ) i n l o n g i t u d i n a l and c r o s s - s e c t i o n a l analyses of con- t i n u i n g care retirement communities (ccrc) shows an i n c r e a s e i n the p o p u l a r i t y of l a r g e r s i z e u n i t s . while the s t u d i o or one-bedroom u n i t has been the most popular u n i t choice i n the l a s t years, two-bedroom and even three bedroom u n i t s are becoming i n c r e a s i n g l y popular f o r a f f l u e n t r e t i r e e s over the age of (regnier, pynoos , p. ). t h e r e f o r e , i n the co-op housing and s t r a t a t i t l e c l u s t e r b i g g e r d w e l l i n g u n i t s would be programmed to respond to the demand of the market. table - .--housing type # r e n t a l housing space program component q-ty u n i t net area t o t a l net area remarks d w e l l i n g u n i t s ; s t o r e y apartment t o t a l number of b u i l d i n g . r e s i d e n t s : br s i n g l e m m br double m m br handicapped m m f l o o r lounge m m main lounge m m adm. o f f i c e m m maint. storage m m common laundry communal storage m m m m washers & dryers/each h . t o i l e t at lounge garbage(chute)rm. s e r v i c e rms (m&e) approx. m design space m a i l room e l e v . mech. room total m gross area: x . = . m p r i v . o u t d o o r spaces x m = m p a t i o s / b a l c o n p a r k i n g : space per u n i t s , spaces x . m = . m on ground ( i n c l u d . a i s l e s ) references: em a r c h i t e c t u r e inc., p r i o r s t . , s e n i o r c i t i z e n ' s complex - chinese freemason's s o c i e t y (bcmhc housing) . table - .--housing type # co-op housing dwelling u n i t space program component q-ty u n i t net area t o t a l net area remarks br+den( %) br ( %) communal stg. communal laun. o f f i c e m m m m m m m m m m washers & dryers total m gross area: x . = . m p r i v a t e outdoor spaces: x m = m parking: space per u n i t spaces x . m = m table - .--type # s t r a t a t i t l e d w e l l i n g u n i t s space program component q-ty u n i t net area t o t a l net area remarks br ( %) m m br + den ( %) m m br ( %) m m lobby lounge m m total m gross area: x . = m p r i v a t e outdoor spaces: x m = m parking: . space per u n i t , spaces x . m = m references: outdoor p r i v a t e spaces comply with requirements of bchmc design g u i d e l i n e s f o r s e n i o r s ' housing; green , p. ; carstens , p. . . . . housing p a t t e r n and c r i t i c a l issues: people need to i d e n t i f y with the neighbourhood and f e e l comfortable i n t h e i r houses. t h e r e f o r e , i t i s necessary to p r o v i d e an adequate type of housing arrangement t h a t w i l l e v e n t u a l l y f u l f i l l t h e i r needs. research s t u d i e s on housing (alexander ) have i n d i c a t e d t h a t the most a p p r o p r i a t e p a t t e r n i s the c l u s t e r of l a n d and homes immediately around one's own home. that p a t t e r n can be implemented u s i n g row houses. a v i t a l f u n c t i o n of such a c l u s t e r i s n e i g h b o u r l y c o n t a c t which becomes one of the most important o b j e c t i v e s i n the c r e a t i o n of e l d e r l y housing. the same r e s e a r c h study says t h a t the most a p p r o p r i a t e s i z e of the c l u s t e r i s or housing u n i t s because: t h i s i s a number of people t h a t can s i t round a common meeting t a b l e , can t a l k to each other d i r e c t l y , face to f a c e . with or housholds, people can meet over a k i t c h e n t a b l e , exchange news on the s t r e e t and i n the gardens, and g e n e r a l l y , w i t h o u t much s p e c i a l a t t e n t i o n , keep i n touch with the whole of the group. when there are more than or homes forming a c l u s t e r , t h i s balance i s s t r a i n e d . we t h e r e f o r e s e t an upper l i m i t of around on the number of housholds t h a t can be n a t u r a l l y drawn i n t o a c l u s t e r (alexander , p. ). the ccc housing w i l l comprise s e v e r a l c l u s t e r s with the average number of d w e l l i n g u n i t s i n each c l u s t e r . the c r i t i c a l i s s u e s w i t h i n t h i s p a t t e r n are: shape ( l a y o u t ) of the c l u s t e r , c l u s t e r i d e n t i t y and l i n k with the core centre. . . . shape ( l a y o u t ) of the c l u s t e r the shape of the c l u s t e r a f f e c t s o p p o r t u n i t i e s f o r s o c i a l i n t e r a c t i o n . i t i s necessary to c r e a t e a common l a n d -- open shared space which w i l l p l a y a double r o l e : as a s e m i - p u b l i c outdoor p l a c e where the e l d e r l y gather s o c i a l l y and as a c l u s t e r ' s garden with s e m i - p r i v a t e or even p r i v a t e areas i n f r o n t of the d w e l l i n g u n i t s (see f i g . - ). equal access from the u n i t s and v i s i b i l i t y from p r i v a t e p a t i o s w i l l promote a sense of ownership and c o n t r o l over common space. other design g u i d e l i n e s suggests p l a c i n g the u n i t e n t r i e s towards common space. access walks l e a d i n g to u n i t s should be separate from the common access walks to the f a c i l i t y . t h i s arrangement w i l l enhance c l u s t e r i d e n t i t y and i n c r e a s e s r e s i d e n t s ' c o n t r o l over access. a shared walkway and a common laundry i n the centre w i l l p r o v i d e o p p o r t u n i t i e s f o r s o c i a l i n t e r a c t i o n . p r i v a t e u n i t walkways w i l l provide a t r a n s i t i o n zone from s e m i - p u b l i c area to s e m i - p r i v a t e space. small p a r k i n g areas adjacent to u n i t s w i l l enhance the sense of community (see f i g . - ). . . . c l u s t e r i d e n t i t y each c l u s t e r should be arranged as an i d e n t i f i a b l e p a r t of the l a r g e r p r o j e c t to promote wayfinding and to i d e n t i f y with i t . n a t u r a l s i t e elements as w e l l as b u i l t form elements l i k e c o l o u r , s c a l e and m a t e r i a l s w i l l u n i f y c l u s t e r v i s u a l l y . t h i s allows people to r e a l i z e t h a t a l l u n i t s i n one c l u s t e r r e l a t e to one another. furthermore, c l u s t e r i d e n t i t y can be r e i n f o r c e d by grouping the s i t t i n g area with communal f a c i l i t i e s such as laundry or storage (see f i g . - ). f i g . - common space i n the c l u s t e r as a garden c o m m o n l a u n d r y s h a r e d w a l k w a y p r i v a t e u n i t w a l k w a v p a c k i n g - f i g . - common space i n the c l u s t e r with shared walkway f i g . - c l u s t e r i d e n t i t y r e i n f o r c e d by a c e n t r a l s i t t i n g area and shared storage shed. f i g . - p e d e s t r i a n c i r c u l a t i o n developed as a "feeder" system. source: based on carstens, d. s i t e planning and design f o r the e l d e r l y - issues, g u i d e l i n e s and a l t e r n a - t i v e s . , p. . . . . r e l a t i o n s h i p with the core centre i t i s necessary to provide d i r e c t , easy access to the core centre where a l l major s e r v i c e s are l o c a t e d . the l a y o u t of p e d e s t r i a n and v e h i c u l a r c i r c u l a t i o n systems w i t h i n the o v e r a l l s i t e p l a n should be easy to recognize and i d e n t i f y . the general l a y o u t of the p e d e s t r i a n c i r c u l a t i o n system may be developed as a "feeder" system (carstens ). walkways l e a d i n g from u n i t s may converge on a c l u s t e r walkway and c l u s t e r walkways converge on a major access route which leads to the core centre. a h i e r a r c h y of r o u t e s , from p r i v a t e u n i t access walks to primary r o u t e s , w i l l enhance p r i v a c y w i t h i n the c l u s t e r s and a sense of community w i t h i n the o v e r a l l s i t e p l a n . i t w i l l a l s o promote wayfinding (see f i g . - ) and subsequently w i l l add to o l d e r r e s i d e n t s ' sense of s e c u r i t y . the "shared c i r c u l a t i o n " p a t t e r n w i l l g i v e r e s i d e n t s the maximum chance of meeting one another c a s u a l l y so t h a t i t w i l l enhance o p p o r t u n i t i e s f o r s o c i a l i n t e r a c t i o n . in order to provide s a f e t y and s e c u r i t y the p e d e s t r i a n path system should not c r o s s with the v e h i c u l a r routes system. the major access walkway should not pass d i r e c t l y through the a c t i v i t y area; however, i t should a l l o w f o r s u r v e i l a n c e from those areas. in order to p r o v i d e maximum comfort f o r r e s i d e n t s the main access walkways should be p r o t e c t e d from r a i n or sun g l a r e by a t r e l l i s or canopy. . . dwelling units . . . f u n c t i o n a l components the p r i n c i p a l form of s h e l t e r i n the independent l i v i n g com- ponent of the ccc w i l l be a d w e l l i n g u n i t . spaces i n a d w e l l i n g u n i t w i l l embody the b a s i c a c t i v i t i e s of everyday l i v i n g such as: s l e e p i n g , l e i s u r e , p e r s o n a l hygiene, food p r e p a r a t i o n and d i n i n g . these a c t i v i t i e s are common to a l l r e s i d e n t s and they determine the r e l a t i o n s h i p between spaces as w e l l as the s i z e , shape, equipment and c h a r a c t e r of the space. each u n i t w i l l i n c l u d e components such as an e n t r y area, d i n i n g / l i v i n g room, k i t c h e n , bathroom, bedroom(s), storage space, and balcony or p a t i o . . . . . category of users and t h e i r needs g e n e r a l l y the users w i l l f a l l i n t o three c a t e g o r i e s : the e l d e r l y couple, the s i n g l e e l d e r l y person ( u s u a l l y women) and two e l d e r l y r e l a t i v e s or f r i e n d s s h a r i n g a u n i t . s i n g l e s u s u a l l y w i l l l i v e i n the one-bedroom u n i t s while couples i n one-bedroom or two-bedroom s u i t e s with enough space i n the bedroom f o r double or twin beds. however, each of the types of housing development d e s c r i b e d e a r l i e r should o f f e r v a r i o u s forms of one and two bedroom d w e l l i n g u n i t s i n order to accommodate a wider range of housing needs and l i f e - s t y l e s . these needs can i n c l u d e ease of maintenance, f l e x i b i l i - t y i n f u r n i t u r e arrangements f o r hobbies, space f o r en- t e r t a i n i n g l a r g e groups of f a m i l y and f r i e n d s , o p t i o n s f o r e a t i n g , adequate storage f o r valued p o s s e s s i o n s and convenient and safe access between rooms without s a c r i - f i c i n g p r i v a c y ( z e i s e l , p. ). s t u d i e s have shown c o n s i d e r a b l e d i f f e r e n c e s i n need between c o n v e n t i o n a l housing p r o v i s i o n s and the requirements of d i s a b l e d people. in keeping with the l i v i n g environment o b j e c t i v e s (chapter ). each of the u n i t s should be adaptable f o r use by handicapped persons. the co-op and s t r a t a - t i t l e townhouses should be designed as o n e - l e v e l u n i t s to f a c i l i t a t e a c c e s s i b i - l i t y . the d w e l l i n g u n i t s p r o v i d e d by the bchmc program have to comply with the bchmc design g u i d e l i n e s ( % of u n i t s wheelchair a c c e s s i b l e ) . one of the most c r i t i c a l , yet overlooked, aspects of the p h y s i c a l environment i s the matching of equipment, f u r n i s h i n g and design d e t a i l s to the s p e c i a l p h y s i o l o g i c a l needs of the o l d e r person. s a f e t y f e a t u r e s and design s o l u t i o n s t h a t support independence and reduce p h y s i c a l and sensory b a r r i e r s f o r o l d e r persons should be implemented. the k i t c h e n and bathroom are e x p e c i a l l y c r i t i c a l , because design mistakes i n the k i t c h e n or bathroom l a y o u t can p o t e n t i a l l y t h r e a t e n s a f e t y or endanger the l i f e of o l d e r persons (regnier and pynoos ). the k i t c h e n design should r e s p e c t the anthropometric c h a r a c t e r i s t i c s of the e l d e r l y . bathroom design should emphasize convenience and s a f e t y ( p r o v i s i o n of grab bars, adequate l i g h t l e v e l s and f i x t u r e s , c a l l b u t t o n s ) . . . private outdoor spaces - independent living housing . . . i n t r o d u c t i o n landscape design, although only one of many aspects of a housing p r o j e c t , p l a y s a s u b s t a n t i a l r o l e i n c r e a t i n g h i g h - q u a l i t y housing f o r the o l d e r people. designing outdoor spaces f o r the e l d e r l y demands s p e c i a l a t t e n t i o n f o r s e v e r a l reasons. f i r s t l y , an a p p r o p r i a t e l y designed environment t h a t meets e l d e r l y needs may e n r i c h t h e i r l i v e s and improve t h e i r independence. secondly, " f u n c t i o n a l " landscape t h a t encourages p a r t i c i p a t i o n of the e l d e r l y i n i t s c r e a t i o n / c u l t i v a t i o n p l a y s a t h e r a p e u t i c r o l e . in the independent l i v i n g c l u s t e r s a l l d w e l l i n g u n i t s w i l l have p r i v a t e outdoor spaces (see f i g . - ). in the r e n t a l apartment b u i l d i n g each d w e l l i n g u n i t w i l l have balcony or p a t i o . . . . elements of p r i v a t e spaces a. the f r o n t yard should not o n l y be an a t t r a c t i v e , person- able s i d e of a d w e l l i n g u n i t , but a l s o a t r a n s i t i o n zone between a very p r i v a t e d w e l l i n g u n i t and a very p u b l i c s t r e e t or access route. t h i s s e m i - p r i v a t e space may encourage s o c i a l i n t e r a c t i o n between neighbours and provide an o p p o r t u n i t y f o r s e l f - e x p r e s - s i o n . the r e s i d e n t s ' gardens may serve f o r t h e r a p e u t i c a c t i v i - t i e s . b. the f r o n t porch, a s m a l l outdoor space with a roof s h e l - t e r , may p r o v i d e r e s i d e n t s with an easy h a l f step between s o l i - tude and s o c i a b i l i t y . t h i s p l a c e may serve as a comfortable s i t t i n g spot i n one's own t e r r i t o r y to watch outdoor a c t i v i t i e s or to chat with the neighbours. in many r e c e n t developments f o r the e l d e r l y , the f r o n t porch becomes one of the most d e s i r a b l e a r c h i t e c t u r a l f e a t u r e s ( a r c h i t e c t u r a l record .nov., p. ). puf lic front yafc£> n?ont t-orch l » l > i i < ^ i _j lu i fcesi&evltial c l u s t e r ii back yafct? c o m m o n ! s p a c ^ community i o u t p o o r | s p a c e s j f i g . - independent l i v i n g outdoor spaces. because people l i k e to watch common area a c t i v i t y . in f i n l a n d , i n the c o m p e t i t i o n f o r an old-age home, the i n s t i t u t i o n a l atmosphere was e l i m i n a t e d by u s i n g v a r i o u s homelike u n i t models with i n d i v i d u a l i t y and o r i e n t a t i o n supported by the f r o n t porch f o r every room-unit ( k o t i l a i n e n , pp. - ). c_. the back y a r d / p a t i o i s the i n f o r m a l p r i v a t e s i d e of a d w e l l i n g . t h i s space may be used i n many ways: as a summer d i n i n g room, or as a p l a c e to r e s t , read, e n t e r t a i n guests or simply grow p l a n t s . however, t h i s p l a c e r e q u i r e s p e c i a l c o n s i - d e r a t i o n i n terms of a c c e s s i b i l i t y , s e c u r i t y and p r i v a c y . d_. the balcony may serve s i m i l a r i l y as p r i v a t e outdoor spaces f o r growing p l a n t s , having s o c i a l g a t h e r i n g or simply e n j o y i n g a view and a l s o a balcony which i s not too f a r removed from the ground (one i s able to g r e e t a f r i e n d ) and which i s not ex- tremely enclosed, can c r e a t e a sense of "connectedness" to the o u t s i d e world (shack , p. ). . . . issues i n designing p r i v a t e outdoor spaces the most important design i s s u e s i n c r e a t i n g p r i v a t e outdoor spaces are: a c c e s s i b i l i t y , s e c u r i t y and p r i v a c y . the p r i v a t e outdoor spaces should be d i r e c t l y a c c e s s i b l e to the l i v i n g room of the d w e l l i n g u n i t . there may a l s o be d i r e c t access to the s l e e p i n g area (green ). the p a t i o or garden should be planned so i t can be e a s i l y maintained by the r e s i d e n t . in order to p r o v i d e a c c e s s i b i l i t y and s e c u r i t y and to p r o t e c t the p r i v a c y of p r i v a t e outdoor areas the f o l l o w i n g g u i d e l i n e s have to be developed: a. p r i v a t e outdoor spaces on the ground f l o o r l e v e l : these area should be a c c e s s i b l e to wheelchair r e s i d e n t s , to those u s i n g walkers and o c c a s i o n a l l y to bedridden r e s i d e n t s . d i r e c t access from the p u b l i c outdoor area should be avoided by c r e a t i n g an i d e n t i t y f o r the outdoor p r i v a t e areas. there should be no d i r e c t a c c e s s i b i l i t y between the p r i v a t e outdoor areas of separate d w e l l i n g u n i t s , i n s p e c i a l l o c a t i o n s design should provide f o r p r i v a c y from adjacent walks or d r i v e s by p r o v i d i n g berms and screens. views on and o f f the s i t e should be maximized, while a t the same time l o s s of p r i v a c y should be minimized, v i s u a l a c c e s s i b i l i t y between the l i v i n g room and the g e n e r a l outdoor area should not be impaired by the design of the p r i v a t e outdoor area. b. p r i v a t e outdoor spaces above grade - r a i s e d t e r r a c e s and b a l c o n i e s : b a l c o n i e s must not o n l y be s a f e , but they must a l s o f e e l s a f e . whenever p o s s i b l e b a l c o n i e s should be r e c e s s e d behind the main face of the b u i l d i n g to provide a s t r o n g sense of e n c l o s u r e , p r i v a c y and s e c u r i t y . b a l c o n i e s should be p r o t e c t e d from p r e v a i l i n g c o l d autumn and s p r i n g winds, and a l l o w maximum sun p e n e t r a t i o n . provide f o r p l a n t e r boxes or pots. be of a rough t e x t u r e on the underside to d i s p e r s e i n c i d e n t sounds. have a minimum t h r e s h o l d h e i g h t to a l l o w easy access from the u n i t . on grade p r i v a t e space w i l l have a paved p a t i o of a t l e a s t square f e e t ( . m ). the remaining area should be designed f o r lawn or p l a n t i n g beds. b a l c o n i e s w i l l have a t l e a s t c l e a r d i - mension of no l e s s than m f o r one-bedroom u n i t s (bcmhc design g u i d e l i n e s ) or be of a minimum width of mm c l e a r to provide space f o r s e v e r a l c h a i r s and access to the wheelchair and i t s t u r n around (cmhc ). . dependent living - intermediate care facility . . f u n c t i o n a l components the intermediate care f a c i l i t y w i l l be developed i n the form of r e s i d e n t i a l c l u s t e r s f o r the e l d e r l y who can not l i v e on t h e i r own. three l e v e l s of i n t e r m e d i a t e care w i l l be o f f e r e d : l e v e l , and (appx.# - ). a c c o r d i n g to the vancouver health department, report (chapter , f i g . - ) there i s a g r e a t demand i n the c i t y of vancouver f o r long term care f a c i l i t i e s , e s p e c i a l l y a t the intermediate care l e v e l s ( c l i e n t s on the w a i t i n g l i s t with a r a t i o of % f o r l e v e l , % f o r l e v e l , % f o r l e v e l and remaining % f o r p e r s o n a l and extended c a r e ) . research has shown ( p r i e s t , p. ; c i t y p l a n n i n g department data ) t h a t % of the e l d e r l y p o p u l a t i o n i s e v e n t u a l l y f o r c e d to move i n t o long-term care f a c i l i t i e s when t h e i r h e a l t h d e c l i n e . for the purpose of t h i s t h e s i s we can assume t h a t about % ( persons) of the e l d e r l y p o p u l a t i o n i n the p o i n t grey area w i l l be seeking such long-term care. however, there w i l l be a l s o e l d e r l y r e s i d e n t s l i v i n g i n k e r r i s d a l e , k i t s i l a n o and dunbar who e v e n t u a l l y w i l l be t r a n s f e r r e d to long-term care f a c i l i t i e s . with the e x i s t i n g beds of intermediate care i n the west side of vancouver we can assume t h a t a " t y p i c a l " three l e v e l care f a c i l i t y with an average of beds per l e v e l would be s u f f i c i e n t to meet the c u r r e n t needs. intermediate care f a c i l i t y r e s i d e n t s w i l l be u s i n g common f a c i l i t i e s i n the core centre such as: r e h a b i l i t a t i o n centre, c l i n i c , auditorium and programs, a r t s & c r a f t s , l i b r a r y and the main concourse with i t s s e r v i c e s . the l i v i n g q u a r t e r s of the ic w i l l be i n the form of separate r e s i d e n t i a l c l u s t e r s with b a s i c care and treatment rooms p l u s c l u s t e r support a c c e s s o r y spaces (nurses s t a t i o n with m e d i c a t i o n room, wheelchair shower, l i n e n storage, j a n i t o r room, residents'laundry, s t a f f washroom, wheel- c h a i r s t o r a g e ) . l i v i n g u n i t s are s i m i l a r i n a l l l e v e l s of i n t e r m e d i a t e care and are e i t h e r p r i v a t e or s e m i - p r i v a t e , each with a washroom (which i n c l u d e s wash-basin i n a v a n i t y and t o i l e t but no bath-tub), entrance h a l l , c l o t h e s c l o s e t . i n t e r - mediate care components w i l l be s u b - d i v i d e d i n t o three n u r s i n g s e c t i o n s each comprising of rooms. the u n i t c l u s t e r ( r e s i d e n t s ) w i l l comprise the f u n c t i o n a l components as shown i n t a b l e - . the l i v i n g u n i t s i n the ic f a c i l i t y w i l l be arranged i n c l u s t e r s of - u n i t s around common area. each c l u s t e r , i n a s o c i a l sense, w i l l c r e a t e a l a r g e " v o l u n t a r y f a m i l y " . the common area w i l l be comprised of a lounge which w i l l serve a l s o as a d i n i n g room l i n k e d to the r e s i d e n t k i t c h e n and s e r v i n g area. the outdoor a c t i v i t y area - open shared space w i l l be i n c o r p o r a t e d i n t o each c l u s t e r by d i r e c t access from the l i v i n g u n i t s and l o u n g e / d i n i n g area. t h i s arrangement w i l l provide a s m a l l e r , human s c a l e to the whole f a c i l i t y and w i l l c r e a t e a " r e s i d e n t i a l neighbourhood" w i t h i n the f a c i l i t y . t h i s arrangement w i l l a l s o promote s o c i a l i n t e r a c t i o n and o p p o r t u n i - t i e s f o r mutual awarness. the ic component w i l l comprise l i v i n g c l u s t e r s and support areas. table - .--intermediate care c l u s t e r space program component q-ty net area t o t a l net area remarks: c l u s t e r type i t o t a l number of r e s i d e n t s : br s i n g l e . m . m br double . m . m loung/dining . m . m m / person s.kitch./serv. . m . m bathing room . m . m t o t a l : . m total number of clusters: , . m c l u s t e r type i i t o t a l number of r e s i d e n t s : br s i n g l e . m . m lounge/dining . m . m s.kitch./serv. . m . m bathing rm. . m . m therap. bath t o t a l : . m total number of clusters: . m c l u s t e r support : nurse s t a t i o n . m . m med. room . m . m w.chair shower . m . m l i n e n storage . m . m s o i l e d u t i l i t y . m . m j a n i t o r rm/st. . m . m res. laundry . m . m s t a f f washroom . m . m w.chair storage . m . m t o t a l : . m total number of cluster support: . m total area: , . m gross area ( m x r e s i d e n t s ) , . m p i r v a t e outdoor spaces: x m . m references: b.c. reg. / . community care f a c i l i t y act. . cmhc. nursing homes and h o s t e l s : design g u i d e l i n e s . . . . living units -- pattern and critical issues issue # sense of r e s i d e n c y the general o b j e c t i v e i n d e s i g n i n g long term f a c i l i t i e s i s to c r e a t e a " r e s i d e n t i a l " q u a l i t y and adequate space f o r s o c i a l i z a t i o n on a spontaneous b a s i s . in most of the e x i s t i n g f a c i l i t i e s the l i v i n g u n i t s have a form of h o t e l - l i k e rooms d e s p i t e the dramatic attempts of many d e s i g n e r s to achieve a "home-like" q u a l i t y and atmosphere. indeed, those attempts were o f t e n addressed i n main lounges, e n t r y areas and common d i n i n g spaces. however, those f e a t u r e do not p r o v i d e a sense of r e s i d e n c y , because they are not w i t h i n the c o n t r o l of the p a t i e n t s - r e s i d e n t s . a c c o r d i n g to k o n c e l i k ( ) c o n t r o l over one's own p h y s i c a l environment i n a long-term care f a c i l i t y depends l a r g e l y upon f i v e f a c t o r s : . m o b i l i t y s t a t u s . four d i s t i n c t l e v e l s of m o b i l i t y are found i n the long-term care s e t t i n g : f u l l ambulatory, d i s a b l e d ambulatory (walk with canes and w a l k e r s ) , semiambulatory (wheelchair bound), and nonambulatory (bedridden). . p e r s o n a l i z a t i o n . the a b i l i t y of the r e s i d e n t to manipulate a r t i f a c t s w i t h i n h i s p h y s i c a l environment, to b r i n g i n p e r s o n a l o b j e c t s , to a f f e c t the c h a r a c t e r of h i s or her surroundings i n a way t h a t i s sympathetic to p e r s o n a l p r e f e r e n c e . . s o c i a l i z a t i o n . the a b i l i t y to communicate with others both i n p u b l i c areas i n groups and i n p r i v a c y , without r e g u l a t i o n , t h r e a t or i n t e r f e r e n c e . . p r i v a c y . there must be a p l a c e where every r e s i d e n t can go to or r e t r e a t t o , t h a t w i l l permit s e c l u s i o n f o r m e d i t a t i o n , c o n s u l t a t i o n , i n t i m a t e d i s c u s s i o n , p e r s o n a l a c t i v i t i e s and r e s t . the most l o g i c a l p l a c e f o r t h i s c a p a b i l i t y i s the r e s i d e n t room. . i d e n t i f i c a t i o n . the r e s i d e n t must f e e l t h a t he or she belongs i n the f a c i l i t y and the f a c i l i t y belongs to him/her. t h i s can not o n l y be aided through d e v i c e s i n the p h y s i c a l environment i t s e l f , but a l s o by i n c l u d i n g the r e s i d e n t i n p l a n n i n g and d e c i s i o n making at the s t a f f and a d m i n i s t r a t i v e l e v e l . m o b i l i t y s t a t u s , however, i s the most important determining f a c t o r i n c o n t r o l l i n g the p e r s o n a l surroundings and the o v e r a l l f a c i l i t y . m o b i l i t y s t a t u s i s o f t e n the f a c t o r used i n determin- i n g the v a r i o u s s e g r e g a t i o n s of people w i t h i n the f a c i l i t y . in "designing the open nursing home" k o n c e l i k makes r e f e r e n c e to a study done by p a s t a l a n ( ) which d i s c u s s e s the a c c e s s i b i l i t y model i n a t y p i c a l n u r s i n g home (see diagram: f i g . - ). the space i n a f a c i l i t y i s d i v i d e d i n t o two groups a c c o r d i n g to r e s i d e n t access. the f i r s t one, i s a primary access group which comprises of the " c o r r i d o r neighbourhood": resident rooms, lounges, bathroom, d i n i n g room and c o r r i d o r s . the second, i s a secondary access group with t h e r a p e u t i c areas. in order to c r e a t e a r e s i d e n t i a l surrounding and a home-like atmosphere, the p h y s i c a l arrangement of the primary access group spaces should be c o n s i d e r e d as the most important i s s u e . f i g . - long term care f a c i l i t y access model source: k o n c e l i k , joseph. designing the open nursing home. , p. . the ccc intermediate care r e s i d e n t i a l c l u s t e r s w i l l c r e a t e a primary access group space i n the form of "homes" f o r ten r e s i d e n t s . each u n i t w i l l open onto a shared l o u n g e / d i n i n g room and not onto a c o r r i d o r , which i s t y p i c a l of i n s t i t u t i o n a l s o l u - t i o n s . t h e i r s p a t i a l h i e r a r c h y w i l l resemble a normal home with p r i v a t e space i n the r e s i d e n t ' s room and washroom and s e m i - p r i - vate area i n the shared " l i v i n g / d i n i n g " room. the i n d i v i d u a l i t y and o r i e n t a t i o n w i l l be supported by g i v i n g i d e n t i t i e s to the entrance of one's room, f o r example, by s m a l l porches, and by making rooms of d i f f e r e n t shape. the i n d i v i d u a l p r i v a t e outdoor p a t i o s w i l l be another f e a t u r e of t h i s "home-like" environment (see f i g . - ) . issue # f l e x i b i l i t y the p r i n c i p l e of space f l e x i b i l i t y has been implemented by a c l u s t e r approach to the f a c i l i t y programming. r e s i d e n t i a l c l u s t e r s of - u n i t s around common areas, a l l o w f o r change of use i n terms of r e q u i r e d l e v e l of care ( l e v e l s ) depending on the a c t u a l needs. the management has the o p t i o n a t any given time to decide on the number of beds and c l u s t e r s i n any l e v e l of c a r e , without any need of change i n the p h y s i c a l i n f r a s t r u c - t u r e of the b u i l d i n g s . t h i s p r i n c i p l e f o l l o w s the o v e r a l l p o l i c y of the ccc f a c i l i t y , which i s based on a smooth t r a n s i t i o n of p a t i e n t s from one l e v e l of care to another. a change i n the r e s i d e n t s c o n d i t i o n w i l l not r e q u i r e moving them from t h e i r u n i t s , so long as the necessary care can be provided. issue # l i n k with the core centre -- way f i n d i n g w i t h i n the ccc f a c i l i t y . the f u n c t i o n a l connection with the core centre, p a r t i c u l a r l y with the r e h a b i l i t a t i o n centre, c l i n i c and main concourse, w i l l be very important. s e v e r a l s t u d i e s (regnier and pynoss ) of e l d e r l y people's environments have shown t h a t beside c r e a t i o n of a b a r r i e r - f r e e a c c e s s i b l e environment, the l e g i b i l i t y of s e t t i n g s has an impact on goal s a t i s f a c t i o n , sense of c o n t r o l , s t r e s s and s a f e t y . s t u d i e s have shown t h a t the problem of d i s o r i e n t a t i o n i n c r e a s e s among r e s i d e n t s of long-term care f a c i l i t i e s , because of the e l d e r l y ' s reduced l e v e l of competence and c o g n i t i v e f u n c t i o n i n g as w e l l as the new u n f a m i l i a r s e t t i n g of n u r s i n g homes. the post-occupancy e v a l u a t i o n of s e v e r a l e l d e r l y f a c i l i t i e s assessed the e f f i c i e n c y of design f e a t u r e s to f a c i l i t a t e wayfinding among r e s i d e n t s . there are f o u r c l a s s e s of environmental v a r i a b l e s , which have p o t e n t i a l impact upon o r i e n t a t i o n and wayfinding i n the e l d e r l y environment: s i g n s , p e r c e p t u a l access, a r c h i t e c t u r a l d i f f e r e n t i a t i o n and p l a n c o n f i g u a r a t i o n (regnier and pynoos , p. ). the use of s i g n s can impact the l e g i b i l i t y of a s e t t i n g by p r o v i d i n g d i r e c t i o n a l i n f o r m a t i o n . in the ccc f a c i l i t y there w i l l be l a r g e g r a p h i c s i g n s i n a l l f u n c t i o n a l components as w e l l as i n the open spaces. the p e r c e p t u a l access to the long term care c l u s t e r s as w e l l as to the core centre w i l l be enhanced by p r o v i d i n g views to f a m i l i a r e x t e r i o r landmarks or views to other l o c a t i o n s w i t h i n the b u i l d i n g such as a c e n t r a l atrium (winter garden) or a common l o u n g e / d i n i n g area w i t h i n r e s i d e n t i a l c l u s t e r s . since the a r c h i t e c t u r a l c h a r a c t e r of each f u n c t i o n a l component w i l l be d i f f e r e n t i t can a l s o c o n t r i b u t e to e f f e c t i v e way-finding. f i n a l l y , the o v e r a l l plan c o n f i g u r a t i o n of b u i l d i n g s , t h e i r shape or l a y o u t may i n f l u e n c e the ease of way-finding. the long-term care f a c i l i t i e s w i l l be designed i n the form of r e s i d e n t i a l c l u s t e r s connected to the main walkways, which w i l l l e a d to the core centre. t h i s "feeder system" of the c i r c u l a t i o n p a t t e r n w i l l promote way-finding. the "promanade" as a main walkway with a g l a s s w a l l i n s t e a d of the s t e r o t y p e i n s t i t u t i o n a l c o r r i d o r w i l l provide views to e x t e r i o r landmarks ( t r e e s or surrounding a c t i v i t y a r e a s ) , which w i l l help r e s i d e n t s i n o r i e n t i n g . the l a y o u t of the r e s i d e n t i a l areas, c l u s t e r i n g s l e e p i n g u n i t s around common shared l o u n g e / d i n i n g areas, w i l l a l s o promote way-finding. these open s o c i a l areas w i l l i n c r e a s e r e s i d e n t s ' s p a t i a l p e r c e p t i o n . the v i s u a l access to the open c e n t r a l area w i l l d i m i n i s h the e f f e c t s of d i s o r i e n t a t i o n and may l e a d to a d e s i r e to explore f u r t h e r p a r t s of the f a c i l i t y . at the entrance to each r e s i d e n t i a l c l u s t e r , there w i l l be l a t e n t cues such as p l a n t s , d i f f e r e n t c o l o u r scheme i n f u r n i t u r e and on the w a l l , which w i l l a l s o c o n t r i b u t e to the l e g i b i l i t y of s e t t i n g s . to core centre legend- c s - c l u s t e r . supporet ct - c l u s t e r t y p e ct - c l u s t e r t y p e z o s - outdoor s p a c e s f i g . - intermediate care f a c i l i t y to cluster. s u p p o r t legend-- & bedroom zb z bedroom bth bathroom d/l dining/li vi no k k-ltchen/servlragr os outdoor. spaces p patio f i g . - intermediate care c l u s t e r type to c o r e c e n t r e wc mp n o cu ch ns vj/ l s rl c t ct c t l e g e n d : c-h meditation qvcmapel ns nufese tat h kio heabm.oh=ice h p memcjime pfcepakatiovi wc staff washfcooh cu clean utility vv/s wheelchair. storage l un eh supply lanltot? room rl * e £ \ d £ u laundry ct cluster- type ctz clustee type f i g . - intermediate care c l u s t e r support . dependent living - extended care facility . . . f u n c t i o n a l components the extended care f a c i l i t y program has been based on the design g u i d e l i n e s of the m i n i s t r y of health ( h o s p i t a l programs). the extended care f a c i l i t y has been programmed f o r p a t i e n t s p l u s beds i n the o b s e r v a t i o n u n i t s . the extended care component d i f f e r s from the intermediate care component because of the f a c t t h a t the p h y s i c a l , mental or emotional c o n d i t i o n s of the e.c. r e s i d e n t s r e q u i r e ongoing assesment and i n t e r v e n t i o n by many d i s c i p l i n e s e.g.: n u r s i n g , d i e t a r y , and medical (appx. # - ). the extended care f a c i l i t y w i l l serve the e l d e r l y with a "high l e v e l " of dependence who r e q u i r e p r o f e s s i o n a l n u r s i n g s e r v i c e s on a twenty-four hour b a s i s and r e g u l a r continuous medical s u p e r v i s i o n (appx. # - ). the extended care component w i l l provide p r i v a t e or s e m i p r i v a t e l i v i n g u n i t s , each with washroom. there w i l l be one, two and four-bedroom wards. however, accommodation f o r a s i n g l e occupant w i l l be a minimum of % of a l l r e s i d e n t s . the l i v i n g u n i t s w i l l be comprised of an e n t r y area, l i v i n g - s l e e p i n g area, washroom and a c l o s e t f o r the r e s i d e n t ' s c l o t h i n g and p e r s o n a l belongings. . . . l i v i n g u n i t s p a t t e r n and c r i t i c a l issues. issue # - c l u s t e r approach groups of - rooms w i l l be c l u s t e r e d with a lounge space and d i n i n g area, thus c r e a t i n g a "neighbourhood of r e s i d e n t s " . there w i l l be three c l u s t e r s with one support area. that area w i l l i n c l u d e a nurses s t a t i o n with m e d i c a t i o n p r e p a r a t i o n and storage room; head nurse's o f f i c e ; s t a f f washroom; clean u t i l i t y rooms; linen storage; j a n i t o r room; r e s i d e n t s ' laundry; and f u r n i t u r e / w h e e l c h a i r storage (see f i g s . - , - , - ). issue # - r e s i d e n t i a l c h a r a c t e r in a c h i e v i n g a r e s i d e n t i a l c h a r a c t e r f o r the ec there are two important f u n c t i o n a l elements: a l i v i n g - u n i t and the c l u s t e r ' s lounge. older people d e s i r e a choice i n l i v i n g accommodations. t h e r e f o r e , the design has to provide a v a r i e t y of l i v i n g - u n i t c o n f i g u r a t i o n s . furtheremore, the e l d e r l y look f o r a sense of autonomy and they need an environment t h a t extends and enhances t h e i r independence. t h e r e f o r e , i n each l i v i n g - u n i t as w e l l as i n the whole f a c i l i t y s p e c i a l design f e a t u r e s and d e t a i l s w i l l be provided i n order to improve t h e i r independence, e.g.: supplementary l i g h t sources, h a n d - r a i l s , " f r i e n d l y " f u r n i t u r e . the r e s i d e n t s w i l l be a b l e , to some extent, to p e r s o n a l i z e t h e i r l i v i n g - u n i t s with t h e i r own f u r n i t u r e and other p e r s o n a l belongings. however, the most important f a c t o r a f f e c t i n g the e l d e r l y i s t h e i r l i m i t e d m o b i l i t y . the extended care f a c i l i t y w i l l be wheelchair a c c e s s i b l e throughout. one of the most important spaces w i l l be the c l u s t e r ' s main lounge. t h i s area w i l l p l a y a m u l t i f u n c t i o n a l r o l e : as a d i n i n g , l e i s u r e and a c t i v i t y area. as r e s e a r c h has shown ( k o n c e l i k ) many r e s i d e n t s of the ec w i l l stay i n t h e i r rooms without being w i l l i n g to p a r t i c i p a t e i n any common a c t i v i t i e s . approximately % of the p a t i e n t s i n an extended care f a c i l i t y are expected to be unable to p a r t i c i p a t e i n any type of a c t i v e program. the remaining % of p a t i e n t s w i l l be capable of p a r t i c i p a t i n g i n the programs developed f o r them. i t should be recognized t h a t the m a j o r i t y of the p a t i e n t s w i l l r e q u i r e a s s i s t a n c e i n g e t t i n g to the main lounge (bchp ec design g u i d e l i n e s ). t h e r e f o r e , i t i s important to encourage r e s i d e n t s to get up, get dressed and proceed i n t o the lounge a c t i v i t y area each day. the more approachable the lounge area the more f r e q u e n t l y i t w i l l be used. t h i s area should a c t as a s u b s t i t u t e l i v i n g room of a normal f a m i l y house. i t should provide a normal, i n v i t i n g ambience which w i l l appeal to r e s i d e n t s . there are s e v e r a l c r i t i c a l i s s u e s i n d e s i g n i n g such space. although the main t h e r a p e u t i c s e r v i c e s w i l l be a v a i l a b l e i n the core centre i t w i l l a l s o be necessary to provide a supplementary space i n the c l u s t e r ' s lounges. t h i s space w i l l be used not o n l y as a l e i s u r e / d i n i n g space but a l s o as p h y s i c a l e x e r c i s e and o c c u p a t i o n a l therapy area f o r a very small group of r e s i d e n t s ( b a s i c a l l y f o r those who don't l i k e to mingle with the r e s t of the ec community). issue # home l i k e environment c r i t i c a l design i s s u e s f o r c r e a t i n g a home-like environment i n the r e s i d e n t i a l c l u s t e r s : . s c a l e of the c l u s t e r the way space i s enclosed, i t s s i z e and shape, the h e i g h t of the room, p l a y s an important p a r t i n c r e a t i n g a home-like environment i n the ec f a c i l i t y . s c a l e can give a f a c i l i t y a r e s i d e n t i a l or i n s t i t u t i o n a l atmosphere. proper s c a l e i n the r e s i d e n t i a l c l u s t e r can be achieved by: a. p r o v i d i n g the l o u n g e / d i n i n g area d i v i d e d i n t o f u n c t i o n a l a l c o v e s f o r v a r i o u s a c t i v i t i e s . b. the space w i l l have v a r i e t y of c e i l i n g h e i g h t s by p r o v i d i n g sky l i g h t s i n the l o u n g e / d i n i n g area and lower c e i l i n g i n the r e s t , p a r t of the c l u s t e r . c. the s i z e and shape of f u r n i t u r e , equipment, r a i l i n g s , e l e c t r i c a l switches and other d e t a i l s w i l l be designed i n accordance with the e l d e r l y ' s antropometrics. . p r o x i m i t y to l i v i n g u n i t s a l l l i v i n g u n i t s w i l l have d i r e c t access to the l o u n g e / d i n i n g area. . connection with the outdoor a c t i v i t i e s a l l l i v i n g u n i t s w i l l have d i r e c t access to p r i v a t e outdoor space. the l o u n g e / d i n i n g area w i l l have connection to the shared outdoor space. issue # resident l i v i n g u n i t . c r i t i c a l design i s s u e s i n the r e s i d e n t u n i t : . p r i v a c y i n two and f o u r bed rooms ( s e t t i n g up one's t e r r i t o r y ) . a l l two and f o u r bed rooms w i l l be designed to p r o v i d e one's r e s i d e n t t e r r i t o r y by b i a x a l ownership arrangement. . view from the bed: windows and c e i l i n g become important space elements of bedridden r e s i d e n t ' s environment. windows i n the r e s i d e n t s ' rooms w i l l have a s i l l h e i g h t which w i l l allow a view through the window to the o u t s i d e world (see p r i v a t e out- door space). c e i l i n g s w i l l be enhanced by p r o v i d i n g s t i m u l a t i n g i n t e r i o r design f e a t u r e s such as p a i n t i n g s or s c u l p t u r e d sus- pended c e i l i n g s . . . p r i v a t e outdoor spaces i n the dependent l i v i n g - long term care f a c i l i t y at the time of w r i t i n g t h i s t h e s i s there i s no s p e c i f i c l e g i s l a t i o n i n b r i t i s h columbia nor any g u i d e l i n e s , which s p e c i - f i c a l l y determine the landscape requirements f o r each l e v e l of care. there i s b a s i c i n f o r m a t i o n and common requirments i n the community care f a c i l i t y act, extended care design g u i d e l i n e s and cmhc design g u i d e l i n e s i n terms of v a r i e t y of outdoor spaces, p r i v a c y and some p h y s i c a l c o n d i t i o n s . however, there i s r e l a - t i v e l y l i t t l e i n f o r m a t i o n r e g a r d i n g s p e c i f i c approaches to the design f o r e l d e r l y r e s i d e n t s i n the h i g h e r l e v e l s of dependency. in the a n a l y s i s of outdoor spaces i n the case s t u d i e s of three d i f f e r e n t l e v e l s of care (appx. # - ) i found t h a t o n l y parkwood manor, congregate housing i n coquitlam, b.c. p r o v i d e s d w e l l i n g u n i t s with p r i v a t e b a l c o n i e s or p a t i o s . in the intermediate care f a c i l i t y i n h o l l y b u r n house and i n the u n i v e r s i t y h o s p i t a l , ubc s i t e extended care u n i t there i s no d i r e c t access from i n d i v i d u a l s l e e p i n g u n i t s to open outdoor spaces. although a l l intermediate care u n i t s i n h o l l y b u r n house are l o c a t e d on the ground f l o o r l e v e l the o n l y access to the shared p a t i o i s through the e x i t of the f a c i l i t y . the ubc s i t e extended care u n i t i s a s i x s t o r e y b u i l d i n g without any p r i v a t e b a l c o n i e s . the o n l y small (too small f o r a l l r e s i d e n t s ) outdoor p a t i o i s adjacent to the common spaces on the ground f l o o r l e v e l and not e a s i l y a c c e s s i b l e to the r e s i d e n t s . t h e r e f o r e , t h i s p a t i o i s u n d e r u t i l i z e d . the n u r s i n g home i n the motion p i c t u r e country house i n woodland h i l l s c a l i f o r n i a i s an i n t e r e s t i n g example of a new approach to the design of outdoor p r i v a t e spaces i n a long-term care f a c i l i t y a t the extended care l e v e l . the c l u s t e r i n g of f o u r p a t i e n t rooms around an i n t e r i o r v e s t i b u l e c r e a t e s a geometry t h a t accommodates shared b a l c o n i e s l i n k e d to each u n i t (see f i g . - ). while having p r i v a t e rooms the r e s i d e n t s have an o p p o r t u n i t y f o r s o c i a l i n t e r a c t i o n i n an adjacent s e m i - p r i v a t e outdoor space. since e l d e r l y people i n long term care f a c i l i t i e s are l e s s mobile, d i r e c t access from t h e i r s l e e p i n g u n i t s to the outdoor spaces as w e l l as views from t h e i r u n i t w i l l keep them i n touch with the o u t s i d e world. in the ccc long term r e s i d e n t i a l c l u s t e r s a l l s l e e p i n g u n i t s w i l l have d i r e c t access to the outdoor spaces. a p l a n t i n g area o u t s i d e each u n i t w i l l d e f i n e p e r s o n a l t e r r i t o r y and minimize chance f o r p r i v a c y i n v a s i o n . however, a l l r e s i d e n t s w i l l share a l s o common outdoor space, which may be claimed by s e v e r a l r e s i d e n t s . these arrangement w i l l g i v e the r e s i d e n t s a choice f i g . - p r i v a t e outdoor spaces i n nursing home source: bobrow/thomas a r c h i t e c t s , motion p i c t u r e country house woodland, c a l i f o r n i a . to be i n p r i v a t e t e r r i t o r y , or have an o p p o r t u n i t y to meet other r e s i d e n t s and to watch an a c t i v i t y i n the nearest common open areas. for those who are unable to go o u t s i d e views of a t t r a c t i v e outdoor spaces w i l l be e s p e c i a l l y important ( k o n c e l i k ). views from the windows are important ways f o r r e s i d e n t s to f e e l connected with the r e s t of the world. a t t r a c t i v e views provide r e l i e f and p l e a s u r e . there i s evidence i n r e s e a r c h ( r e i z e n s t e i n carpman et a l . ) t h a t p l e a s a n t views can i n c r e a s e the r e s i ^ dent's sense of w e l l - b e i n g and decrease recovery time and need f o r p a i n - r e l i e f medication. outdoor views remind the e l d e r l y of the season, time of a day and weather. these are important " r e a l i t y cues" f o r long-term, c r i t i c a l l y i l l r e s i d e n t s ( r e i z e n s t e i n carpman et a l . , p. ). the flow of time i s the most b a s i c and continuous of n a t u r a l phenomena. the r e p e t i t i v e rhythm of dawn, daytime, evening, sunset and n i g h t has marked t h e r a p e u t i c a l value. confined to bed a r e s i d e n t can l o s e t h i s rhythm of moving on, of p r o g r e s s - i n g . t h e r e f o r e , i t should be e s s e n t i a l i n the new development to provide t r e e s and p l a n t s which b r i n g out t h i s rhythm through the e f f e c t of changing shadows, and c o l o u r s i n the v a r i o u s seasons of the year. t h e r e f o r e , the ccc open spaces w i l l be v i s u a l l y s t i m u l a t i n g with a view of a c t i v i t y i n the surrounding areas. a l l s l e e p i n g u n i t s w i l l have window s i l l h e i g h t s which allow bedridden r e s i d e n t s see out the window e a s i l y . table - .--extended care c l u s t e r space program component q-ty u n i t net area t o t a l net area remarks: c l u s t e r type i t o t a l number of r e s i d e n t s : - bedroom m m - bedroom m m lounge/dining m m m per bed s a t e l l i t e k i t c h e n m m bathing f a c i l i t i e s m m bath f i x . s o i l e d u t i l i t y m m t o t a l : m t o t a l number of c l u s t e r s : m c l u s t e r type i i t o t a l number of r e s i d e n t s • bedroom m m bedroom m m lounge/dining m m s a t e l l i t e k i t c h e n m m bathing f a c i l i t i e s m m bath f i x . s o i l e d u t i l i t y m m t o t a l : c l u s t e r support nurses s t a t i o n : c o n t r o l clean u t i l i t y & medicine prep. head n. o f f i c e staff'washroom medit.rm/chapel linen supply j a n i t o r rm resid. laundry w.chair store m m m m m m m m m m m m m t o t a l : m table - .--extended care c l u s t e r (cont'd) space program component q-ty u n i t net t o t a l net remarks: area area observation u n i t f o r beds bedroom m m bedroom m m lounge/dining m m linen supply m m s o i l e d u t i l i t y m m bathing f a c i l i t y m m f i x . storage m m t o t a l : m grand t o t a l : , m gross area: m x beds = , m references: bchp. extended care design g u i d e l i n e s . . cjp a r c h i t e c t s calberg jackson p a r t n e r s . st. v i n c e n t ' s extended care h o s p i t a l - space program. . gardiner thornton p a r t n e r s h i p . st. michael's centre - f u n c t i o n a l and space program. . legend • cs cti ct os cluster support cluster type cluster. type outdoor. spaces observation unit security control f i g . - extended care f a c i l i t y legend: b bedroom b bedroom t y l dining/living k s . k l t c ^ r ^ / s e r v i u g - bth bathing feooh su soiled utility p patio os outdoor spaces f i g . - extended care c l u s t e r type to c o r e c e n t r e rl ls w su c t c t c t legend • ct cluster tvpe ctz cluster type . w/ wheelchair storage ns nurse station mr medication pjdom wc staff washroom rl residents' laundry ls linen storage ws wheelchair shower janitor roov su soiled utility f i g . - extended care c l u s t e r support . core centre in keeping with the o b j e c t i v e s of the ccc, the core centre w i l l provide s e r v i c e s f o r the r e s i d e n t s of the f a c i l i t y and to some extent f o r the e l d e r l y from the community of the west p o i n t grey area. the core centre w i l l be comprised of major f u n c t i o n a l components and each of them w i l l i n c l u d e s e v e r a l a c t i v i t y c e n t r e s . there w i l l be two types of components: . components s e r v i n g the ccc f a c i l i t y o n l y e.g.: m a t e r i a l s e r v i c e s , maintenance s e r v i c e s , p l a n t s e r v i c e s , s t a f f support and laundry; . components which w i l l serve the r e s i d e n t s of the ccc and the e n t i r e community: r e h a b i l i t a t i o n centre, c l i n i c , pharmacy, a d m i n i s t r a t i o n , main concourse, food s e r v i c e s , food f a i r , a r t s and c r a f t s , l i b r a r y , auditorium and indoor r e c r e a t i o n programs; the core centre w i l l r e q u i r e l a r g e open spaces f o r a v a r i e t y of group a c t i v i t i e s . there w i l l have to be a l s o ample grounds around the b u i l d i n g f o r important supplementary f u n c t i o n s l i k e : p a r k i n g , s e r v i c e & d e l i v e r y and r e c r e a t i o n . ^ e f e v e ccc only i— < a o > u ui material services .for ccc r e s i d e n t s -and community outlook. activity a r e a /it z _j o p h a £ n \ a c y food s e r v i c e s food fair main concouesa-r staff support apmlnlst. _ "parkin& lege isp- malofc pebestrlan circulation majofc vehicular access ma r service access f i g . - core centre . . . maim concourse a complex of b u i l d i n g s with no c e n t e r i s l i k e a man without a head. alexander, a p a t t e r n language ) purpose one of the major f u n c t i o n a l components of the core centre w i l l be the main concourse, which w i l l c r e a t e a c e n t r a l forum ( p u b l i c place) f o r the f a c i l i t y . there o l d e r people may come to meet each other, to chat with c l o s e f r i e n d or c a s u a l l y t a l k with new acquaitances i n an a t t r a c t i v e , comfortable s e t t i n g . i t w i l l a l s o be a p l a c e f o r b a s i c commercial s e r v i c e s . ) f u n c t i o n a l d e s c r i p t i o n a. winter garden - conservatory the landscape may be brought i n s i d e the b u i l d i n g so t h a t i t can be enjoyed d u r i n g the winter months and d u r i n g the time of bad weather (gruffydd ). although i t may be very c o s t l y to b u i l d a landscaped i n t e r i o r atrium, i t would be worthwhile to compare the b e n e f i t s i t b r i n g s f o r r e s i d e n t s i n terms of t h e i r human needs, a g a i n s t the i n i t i a l c a p i t a l c o s t . the i n s t i t u - t i o n a l f e e l i n g would be decreased, because the p l a n t s provide a "home l i k e " atmoshpere. b r i n g i n g nature indoors may h o l d s i m i l a r p s y c h o l o g i c a l b e n e f i t s to a c c e s s i n g nature outdoors. p l a n t s are s o o t h i n g and r e s t f u l , e s p e c i a l l y f l o w e r i n g ones. they r e p r e s e n t l i f e , hope and growth. t h e r e f o r e , a green i n t e r i or may become a key element i n the environment f o r the e l d e r l y . in the core centre, i n the heart of the main concourse, the conservatory w i l l be one of the most a t t r a c t i v e components. during many r a i n y days i n vancouver, there w i l l be a c h e e r f u l , p l e a s a n t atmosphere c r e a t e d by p l e n t y of p l a n t s , (some of the e x i s t i n g b e a u t i f u l t r e e s can be i n c o r p o r a t e d w i t h i n t h i s p l a c e ) , water f e a t u r e and l i v e f i s h and b i r d s . e s p e c i a l l y a l i v e fauna w i l l p l a y a s i g n i f i c a n t r o l e i n t h i s environment. recent s t u d i e s have shown t h a t the bond with animal com- panions i s s t r o n g e r and more profound a t o l d e r age (bustad ; s a v i s h i n s k y ). t h e r e f o r e , i n many f a c i l i t i e s f o r the e l d e r l y a new program c a l l e d "pet therapy" has been i n t r o d u c e d . t h i s program has confirmed the p o s i t i v e e f f e c t s of pets therapy on the e l d e r l y ' s mental and p h y s i c a l h e a l t h . although i n the ccc conservatory o n l y b i r d s and f i s h are planned they w i l l n e v e r t h e l e s s provide s t r o n g v i s u a l s t i m u l a t i o n and o p p o r t u n i t i e s to s t a r t a c o n v e r s a t i o n with another observer. l o n e l i n e s s i s a problem f o r many o l d e r people. nonverbal communication can decrease the e l d e r l y ' s sensory d e p r i v a t i o n . the idea of c r e a t i n g the winter garden i n the core centre was not only to provide green area i n s i d e the f a c i l i t y to enjoy i t d u r i n g the r a i n , but a l s o to c r e a t e a " f r i e n d l y environment" with as much as p o s s i b l e o p p o r t u n i t i e s f o r s o c i a l i n t e r a c t i o n . b. m a i l boxes the main concourse, being l o c a t e d on a busy c i r c u l a t i o n route, r i g h t i n the heart of the f a c i l i t y , w i l l be an i d e a l l o c a t i o n f o r the m a i l boxes f o r f a c i l i t y r e s i d e n t s . i t w i l l be a d a i l y d e s t i n a t i o n f o r almost every h a b i t a n t . c. commercial components commercial components such as beauty and h a i r salon, royal bank annex f o r example and general store w i l l c r e a t e an environment of "an a c t i o n t a k i n g p l a c e " as w e l l as w i l l enhance business i n t e g r a t i o n with the p o i n t grey community. d. s e n i o r s ' day care for s e n i o r s l i v i n g i n the neighbourhood, the main concourse w i l l provide a s e n i o r s ' day care centre with easy access to d i n i n g areas, food f a i r component, s p e c i a l programs, r e h a b i l i - t a t i o n centre, c l i n i c and outdoor a c t i v i t i e s areas. table - .--main concourse space program components: net area remarks: . main entrance . m . coat room . m . conservatory . m . a r t s e x i b i t i o n . m . bank . m . beauty salon . m c h a i r s , s i n k s with counters, h a i r d r y e r s . . day care . m f o r p a r t i c i p a n t s who r e q u i r e r e s t p e r i o d d u r i n g the day . washrooms m&f&hand'd . m . storage/maintenance . m . m a i l boxes rm f o r ec,ic, rc . m f o r r e s i d e n t s . general s t o r e : hrs . m "max" or " & " total: . m gross area: x . = . m references: apra. f a c i l i t i e s program f o r the george derby long term care s o c i e t y . , p.g . g a r d i n e r thornton p a r t n e r s h i p . st. michael's centre f u n c t i o n a l and space program. , p. . . northwood multi-purpose centre, p h y s i c a l f a c i l i t i e s data l i s t . r""] r ^ ^ l nr-.l i — i i i f ^ h l i i i $ s i i is*, i j pharmacy [ i a p m i n i s t r - parkingr p i g . - main concourse . . . food fair - dining without communal e a t i n g , no human group can h o l d together. alexander, a p a t t e r n language purpose in keeping with the o b j e c t i v e s of c r e a t i n g an i n f o r m a l community network of f r i e n d s and r e l a t i v e s , the ccc food f a i r component w i l l become an a t t r a c t i v e and u s e f u l p l a c e f o r the e l d e r l y . four p r i n c i p a l components make up the scheduled group a c t i v i t y programs at most s e n i o r centres: d i n i n g , s p e c i a l programs, meeting/classes and a r t s / c r a f t s . the d i n i n g component p r o v i d e s o p p o r t u n i t i e s to meet new people and to share p l e a s a n t experience. lunch o f t e n becomes one of the major programs of the day, with other a c t i v i t i e s scheduled around i t . i t can be a f e s t i v e o c c a s i o n so the d i n i n g area should r e f l e c t i t s impor- tance. (jordan , pp. - ). while most centres c o n f i n e t h e i r d i n i n g a c t i v i t i e s to a r e g u l a r luncheon program, i n the case of the ccc food f a i r b r e a k f a s t s , d i n n e r s and even snacks w i l l a l s o be a v a i l a b l e . annual banquets and s p e c i a l h o l i d a y d i n n e r s , such as thanks- g i v i n g or christmas, may b r i n g a l a r g e turnout of p a r t i c i p a n t s . such meals are o f t e n served banquet-style and need a room l a r g e enough to h o l d a l l of the p a r t i c i p a n t s . monthly meetings of a c i v i c group or the ccc board of d i r e c t o r s may be h e l d there i n c l u d i n g a luncheon or dinner. for the purpose of t h i s t h e s i s i assume t h a t up to % ( ) of r e s i d e n t s i n the independent l i v i n g c l u s t e r s and t h e i r o c c a s i o n a l guests w i l l be i n t e r e s t e d i n the food s e r v i c e s . beside t h a t number, there w i l l a l s o be day care p a r t i c i p a n t s and v i s i t o r s from the community. a c c o r d i n g to a study conducted by p r o f e s s o r f r a n c i s carp on l i f e s a t i s f a c t i o n of v i c t o r i a p l a z a r e s i d e n t s ( h i g h - r i s e s e n i o r s apartment b u i l d i n g i n san antonio, texas with s e n i o r centre on the ground f l o o r ) , per cent of respondents " s t r o n g l y and p e r s u a s i v e l y d e s i r e d " i n c l u s i o n of some p l a c e they c o u l d buy meals a t reasonable c o s t . the most common improvement suggested f o r the s e n i o r centre was a d d i t i o n of c a f e t e r i a , c o f f e e shop or c a f e . the p r o v i s i o n of a p l a c e to buy meals was suggested by per cent of respondents while a d d i t i o n of food s e r - v i c e s was recommended by about per cent (carp , p. ) . ) f u n c t i o n a l d e s c r i p t i o n the food f a i r w i l l be l o c a t e d i n the core centre area c l o s e to the food s e r v i c e s component and adjacent to the main con- course. there w i l l be easy access from the v i s i t o r s p a r k i n g s i n c e i t w i l l be a d e s t i n a t i o n f o r people from the p o i n t grey neighbourhood. in most s e n i o r s ' f a c i l i t i e s there i s a problem of a premeal l i n u p . for the ccc r e s i d e n t s and t h e i r guests who may come before the doors of the r e s t a u r a n t are open, there w i l l be p l e n t y of room w i t h i n the main p l a z a conservatory f o r w a i t i n g . a. restaurant the food f a i r w i l l i n c l u d e a r e s t a u r a n t with w a i t r e s s s e r v i - ces. a study of seton v i l l a r e s i d e n t s p r e f e r e n c e s (gutman , p. ) showed t h a t about h a l f ( . per cent) expressed a c l e a r preference f o r w a i t r e s s s e r v i c e , while . per cent chose c a f e t e r i a s e l f - s e r v i c e and . per cent chose c a f e t e r i a with t r a y s e r v i c e . the r e s t a u r a n t w i l l accommodate guests i n a comfortable environment f o r d i n i n g . table spacing w i l l be generous enough to a v o i d crowding ( . m to . m per person). there w i l l be wide gangways to accommodate wheel-chairs. a v a r i e t y of s e a t i n g arrangements, which w i l l permit groupings of two, f o u r , s i x or more at <a t a b l e w i l l c r e a t e p r i v a c y , encourage i n t e r a c t i o n or even provide anonymity f o r those who p r e f e r i s o l a t i o n . some d i n - i n g t a b l e s w i l l be r e c t a n g u l a r ; others round and w i l l i n c l u d e t a b l e s a c c e s s i b l e to wheelchair users. for l a r g e r groups, there w i l l be banquet t a b l e s i n the a l c o v e s . on the t a b l e s , there w i l l be c o l o u r f u l l i n e n c l o t h s and f r e s h f l o w e r s . a p l e a s a n t , c h e e r f u l ambience i n the r e s t a u r a n t w i l l a l s o be c r e a t e d by having a b r i g h t c o l o u r and p i c t u r e s on the w a l l s . the r e s t a u r a n t w i l l have l a r g e windows f o r d i n e r s to see the o u t s i d e while they are e a t i n g . during good weather, there w i l l be an o p p o r t u n i t y to eat outdoor on the t e r r a c e and enjoy a view at the outdoor a c t i v i t i e s . b. coffee-shop for those who l i k e to drop i n j u s t f o r a cup of c o f f e e or t e a , there w i l l be an adjacent coffee-shop with seats over- l o o k i n g the main a c t i v i t i e s w i t h i n the main concourse. people w i l l have an o p p o r t u n i t y to " s i t s t i l l , r e l a x , be on view and watch the world go by". t h i s place may help to i n c r e a s e the i d e n t i t y of a community. i t w i l l be one of the p l a c e s where newcomer to the ccc may s t a r t meeting the people who have been there many years. c. bar/pub the bar/pub w i l l provide y e t another o p p o r t u n i t y f o r the ccc e l d e r l y , as w e l l as, v i s i t o r s from the community to be i n a p u b l i c p l a c e and to f i n d companionship. the seat pub w i l l provide s e a t i n g f o r f o u r to s i x people i n a s e t i n open a l c o v e s o v e r l o o k i n g a c t i v i t i e s i n the c e n t r a l p l a z a . table - .--food f a i r space program: components net area remarks: . restaurant: seats m min. . m per seat . s e r v i c e area m . cafe-shop: seats m min. . m per seat . s e r v i c e area m . pub: s e a t s m total m parking requirements: a minimum of one space f o r the f i r s t m and one e x t r a f o r each a d d i t i o n a l m of gross f l o o r area ( c i t y of vancouver parking by-law, ) . thus, spaces. however, most of the s e n i o r s w i l l walk to the ccc t h e r e f o r e we can reduce i t to spaces = % of c l i e n t s may d r i v e . references: de c h i a r a , j and c a l l a n d e r , j . time-saver standards f o r b u i l d i n g types. . jordan, joe. s e n i o r centre design. , p. . northwood multi-purpose centre, p h y s i c a l f a c i l i t i e s data. . . . food services facility o b j e c t i v e s the o b j e c t i v e of the food s e r v i c e s f a c i l i t y w i l l be to prepare wholesome a p p e t i z i n g food. residents w i l l be provided with s a f e , n u t r i t i o u s and a t t r a c t i v e food which w i l l accommodate s p e c i a l d i e t s (e.g.: s a l t f r e e ; sugar f r e e ; low c h o l e s t e r o l ) . general concept one c e n t r a l k i t c h e n w i l l serve the whole ccc. in terms of t e c h n i c a l requirements i t w i l l be necessary i n the design stage to c o n s u l t food s e r v i c e s and d i e t a r y s p e c i a l i s t s i n order to e s t a b l i s h exact space and equipment needs. feeding requirements: number of r e s i d e n t s : extended care residents + . intermediate care . day care . r e s p i t e care . v i s i t o r s , independent l i v . f l e x i b l e . s t a f f & v o l u n t e e r s f l e x i b l e total approximately ...and a l s o : . t h e r a p e u t i c d i e t s as needed by the extended and intermediate care r e s i d e n t s . d i e t a r y c o u n s e l l i n g as r e q u i r e d f o r those on t h e r a p e u t i c d i e t s , such as d i a b e t i c s , p l u s g e n e r a l n u t r i t i o n a l c o u n s e l - l i n g f o r the r e s i d e n t s , day care c l i e n t s and v i s i t o r s . f u n c t i o n a l d e s c r i p t i o n the k i t c h e n b u i l d i n g w i l l c o n s i s t of one c e n t r a l p r e p a r a t i o n area which w i l l serve the intermediate and extended care f a c i l i - t i e s and the food f a i r i n the core centre area. meals w i l l be served at s a t e l l i t e d i n i n g areas i n the e.c and i.c. and i n the r e s t a u r a n t w i t h i n the food f a i r . r e c e i v i n g , storage, p r e p a r a t i o n goods w i l l be r e c e i v e d a t the r e c e i v i n g p l a t f o r m and s t o r e d i n the day s t o r e s , f r e e z e r s , c o o l e r s , and i f r e q u i r e d i n the c e n t r a l s t o r e room. soups, e n t r e e s , v e g e t a b l e s , s a l a d s , baked goods, d e s s e r t s w i l l be prepared i n the p r o d u c t i o n area of the k i t c h e n f o r d i s p a t c h i n g to the s a t e l l i t e s e r v e r i e s i n food c a r t s or d i r e c t l y to the r e s t a u r a n t s e r v e r y or coffee-shop ( d e s s e r t s and baked goods). a f t e r meals, c o n t a i n e r s , d i s h e s and u t e n s i l s w i l l be r e t u r n e d to the k i t c h e n area f o r c l e a n i n g and h o l d i n g before being r e t u r n e d to the s a t e l l i t e areas. intermediate care d i n i n g in the c l u s t e r , l o u n g e / d i n i n g areas t a b l e s w i l l be prepared with c h i n a , s i l v e r w a r e , l i n e n c l o t h s and f r e s h f l o w e r s . meals w i l l be d e l i v e r e d by food c a r t s and served from steam t a b l e s i n the s a t e l l i t e s e r v e r y / k i t c h e n . dishes w i l l be c o l l e c t e d i n t o s o i l e d d i s h c a r t s and washed i n dishwashers i n the c e n t r a l k i t c h e n , and then r e t u r n e d to the tray p r e p a r a t i o n / c a r t loading area. there w i l l be an emergency n i g h t nourishment s e r v i c e f o r r e - s i d e n t s i n one of the s a t e l l i t e k i t c h e n s . the d i n i n g area w i l l be of s u f f i c i e n t s i z e to accommodate wheel-chair r e s i d e n t s a t the same time. extended care d i n i n g p a t i e n t s w i l l be fed i n the c l u s t e r l o u n g e / d i n i n g areas s i m i l a r to the i.e. or by u s i n g i n d i v i d u a l t r a y s f o r bedside f e e d i n g where r e q u i r e d . r e s p i t e care as i n the i.c. and e.c. f a c i l i t i e s . s t a f f meals meals f o r s t a f f w i l l be served i n the area adjacent to the c e n t r a l k i t c h e n on a s e l f - s e r v e b a s i s , but with s t a f f on duty. day care since the day care component belongs to the main concourse and w i l l be l o c a t e d c l o s e to the food f a i r , d i n i n g f o r day care w i l l take p l a c e i n the restaurant's s p e c i a l l y a l l o c a t e d a l c o v e s . table - .--food s e r v i c e s f a c i l i t y space program components net area remarks: . manager o f f i c e . m . d i e t i c i a n , c l e r k o f f i c e . m . s t a f f changing rms f&m . m m /person . s t a f f lounge/dining . m e.c. and i.c. . p r e p a r a t i o n . m . p r o d u c t i o n . m . tray prep/cart loading . m . dishwashing . m . pot washing . m . c a r t washing . m . c a r t storage . m . waste . m . c o o l i n g storage . m . f r e e z e r storage . m . dry storage . m . day storage . m total . m comparison: bchp extended care design g u i d e l i n e s - f o r beds: m st. m i c h a e l ' s centre - f o r people: m george derby l.term care - f o r people: m jordan, s e n i o r centre design - meals a day: m dry eooi>s storx- refr. stor.. stor. delivery staff chang. w a s h r v i s t a f f c a f e t . tlou f o t w a s h tray prep carts — ^ sufpofl pish wash cart s t o r . £ ' waste dispe- ll sal bud. s cart was.fi a v restaurant main comc. soiled pishes c > f i g . - food s e r v i c e s http://was.fi . . . rehabilitation centre ) purpose one of the most a t t r a c t i v e and unique f e a t u r e s of the ccc w i l l be the r e h a b i l i t a t i o n centre. t h i s centre w i l l c o n s i s t of c e n t r a l i z e d f a c i l i t i e s f o r r e h a b i l i t a t i o n s e r v i c e s which are not o f f e r e d a t the c l u s t e r support l e v e l . i t w i l l serve both the r e s i d e n t s of the ccc and r e s i d e n t s of the p o i n t grey neighbour- hood. t h i s centre w i l l operate w i t h i n the core centre h e a l t h s e r v i c e s programs. however, i t may be simply used as a r e c r e a - t i o n a l area without any s p e c i a l medical s u p e r v i s i o n . ) f u n c t i o n a l d e s c r i p t i o n the r e h a b i l i t a t i o n centre w i l l be l i n k e d with the c l i n i c and main concourse of the core centre. there i s a l s o an easy access f o r the r e s i d e n t s of the ic and ec f a c i l i t i e s . the centre w i l l be connected with outdoor a c t i v i t i e s areas (bowling, m i n i - g o l f , croquet and o t h e r s ) . a. swimming pool f a c i l i t i e s the main f e a t u r e of t h i s centre w i l l be a swimming pool with an adjacent sauna. the swimming pool w i l l be planned as a b r i g h t area with a major s k y l i g h t , evergreen p l a n t s i n s i d e and c o l o r f u l comfortable "beach" f u r n i t u r e . large wall-windows with a view to the o u t s i d e w i l l p l e a s a n t l y l i n k the outdoor and the indoor environments and give many an o p p o r t u n i t y to watch people walking around, while e n j o y i n g the warm water. the swimming pool w i l l be shaped purposely to allow the e l d e r l y to move s l o w l y from shallow to deeper zones. even person u s i n g a wheel-chair w i l l be able to enter the pool without s p e c i a l a s s i s t a n c e . there w i l l be no d i v i n g boards which may c r e a t e hazards. underwater l i g h t i n g w i l l improve the ambience of the pool and w i l l encourage the t i m i d to a c t i v e l y p a r t i c i p a t e . close to the p o o l , there w i l l be a whirpool with adjacent "bar" which w i l l serve non- a l c o h o l i c d r i n k s . within the same f a c i l i t i e s , one can go to a sauna or gymnasium or even go o u t s i d e to e x e r c i s e and take the f r e s h a i r . b. f i t n e s s and dancing club the f i t n e s s and dancing club w i l l provide p h y s i c a l e x e r c i s e s and therapy f o r the r e s i d e n t s and v i s i t o r s . the club w i l l be l i n k e d with outdoor a c t i v i t y areas to promote f i t n e s s a c t i v i t i e s d u r i n g sunny days. the r e s i d e n t s w i l l come here f o r p a r t of t h e i r d a i l y program which may be expanded by physiotherapy i n the centre's treatment area. however, f o r the more a c t i v e e l d e r l y dancing w i l l be e s p e c i a l l y popular. "while ballroom dancing i s o f t e n the f a v o r i t e , square dancing and f o l k dancing a l s o have t h e i r fans" (jordan ). the changing rooms w i l l serve both the swimming pool f a c i l i t i e s and f i t n e s s club. an o f f i c e f o r the a d m i n i s t r a t i v e work r e l a t e d to the a c t i v i t y programs w i l l accommodate spaces f o r the t h e r a p i s t s and program workers. i t w i l l have v i s u a l access to the treatment area. c. the treatment u n i t the treatment u n i t , p r o v i d e s physiotherapy and speech pathology treatment f o r the r e s i d e n t s and the day care c l i e n t s . wheel-chair a c c e s s i b l e washroom w i l l be l o c a t e d adjacent to t h i s area. o c c u p a t i o n a l therapy f o r more f r a g i l e r e s i d e n t s of the ic and ec f a c i l i t i e s w i l l be provided i n t h e i r r e s p e c t e d lounges, while f o r more a c t i v e r e s i d e n t s and v i s i t o r s the core centre programs and s e r v i c e s (e.g.: a r t s and c r a f t s , games, l i b r a r y ) w i l l be a v a i l a b l e . table - . - - r e h a b i l i t a t i o n centre space program components net area remarks: . physiotherapy . m s t a t i o n s . washroom . m . o f f i c e . m . f i t n e s s and dancing . m ballroom . changing room f . m . changing room m . m . swimming pool . x = . x . + . m x = . . m m + pool-surround . equipment storage . m . sauna . m . gymnasium . m . s t a f f room . m total . m parking requirements: a minimum of one space f o r each . m of gross f l o o r area ( c i t y of vancouver, parking by-law, ). p a r k i n g spaces x . m = . m references: de c h i a r a , j . and c a l l e n d e r , j . time-saver standards f o r b u i l d i n g types. . apra. f a c i l i t i e s program f o r the george derby long term care s o c i e t y . , p.g - . p a t r i c , thomas. s e l e c t e d r e h a b i l i t a t i o n f a c i l i t i e s i n the united s t a t e s . , p. . cmhc. nursing home and h o s t e l s with care s e r v i c e s f o r the e l d e r l y design g u i d e l i n e s . . | rnculj i therapy i j mal n i i concoorsel i f i g . - r e h a b i l i t a t i o n centre . . . arts and crafts ) purpose a need of some o l d e r people f o r p e r s o n a l e x p r e s s i o n may be s a t i s f i e d by a v a r i e t y of programs i n the a r t s and c r a f t s rooms. faced with the r e a l i t y of d e c l i n i n g p h y s i c a l s t r e n g t h , l o s s of job, income and perhaps death of a spouse or f r i e n d s , many o l d e r people t u r n to new p u r s u i t s i n order to r e i n f o r c e t h e i r s e l f - i m a g e . a r t s and c r a f t s programs g i v e t h e i r p a r t i c i - pants a chance to engage i n a group e f f o r t , develop c r e a t i v i t y , cooperate and compete with o t h e r s . ) f u n c t i o n a l d e s c r i p t i o n the ccc a r t s and c r a f t s a c t i v i t i e s w i l l be i n c l u d e d i n the a d u l t e d u c a t i o n programs i n the core centre. those programs w i l l be o f f e r e d on a r e g u l a r b a s i s . thus, r e s i d e n t s and v i s i t o r s w i l l be able to spend a g r e a t d e a l of time i n an environment t h a t i s s u p p o r t i v e and rewarding. c l a s s e s w i l l tend to range from to p a r t i c i p a n t s , t h e r e f o r e a l l rooms w i l l be s i z e a b l e , b r i g h t and c h e e r f u l . c r a f t s rooms w i l l be grouped t o g e t h e r to p r o v i d e f l e x i b i l i t y i n case of changing c l a s s s i z e s and d i f f e r e n t c r a f t uses. t h i s p a r t i c u l a r program component w i l l be l o c a t e d a s i d e to p r o t e c t the r e s t of the core centre from n o i s e , or dust which may be generated by c r a f t s rooms. the rooms w i l l be workshops r a t h e r than showplaces. however, there w i l l be a v i s u a l c o n n e c t i o n with the hallway i n the main concourse. t h i s f e a t u r e w i l l allow p o t e n t i a l p a r t i c i p a n t s to observe o t h e r s a t work u n t i l they decide to take p a r t themselves. f i n i s h e d works of the p a r t i c i p a n t s w i l l be e x i b i t e d i n the main p l a z a - a r t s e x i b i t i o n area. the a r t s and c r a f t s area c o n s i s t s of s i x rooms: woodwork, dyeing, weaving, p o t t e r y , work t a b l e s t h a t i n c l u d e needlework, c r e a t i v e a r t s and h a n d c r a f t s , as w e l l as, p a i n t i n g / s k e t c h i n g . however, some of the rooms can be converted to other c r a f t s such as photography, ceramics or c h i n a p a i n t i n g . m a t e r i a l s and equipment w i l l be s t o r e d on open s h e l v e s , i n an adjacent storage room, to p r o v i d e a c c e s s i b i l i t y . table - . — a r t s and c r a f t s space program components unit area m remarks: . o f f i c e . m . s t a f f washroom & chg. rm. . m . dyeing . m . weaving . m . p o t t e r y . m . worktables . m . woodwork . m . p a i n t i n g & s k e t c h i n g . m . storage . m total: . m gross area: . x . = . m references: jordan, joe. s e n i o r centre design. , p. . apra. f a c i l i t i e s program f o r the george derby long term care s o c i e t y . , p. g - . northwood multi-purpose centre, p h y s i c a l f a c i l i t i e s data. seton v i l l a , m u l t i - l e v e l care f a c i l i t y i n burnaby, b.c. wood- w o r k s t o r . wood- w o r k s t o r . s t o r . potte- ry potte- ry paint tu o t weav net- weav net- stor. stor. work tables stor. work tables tmaiki , i c o n c o u r s e i visual access to pedestrian circulation i f i g . - a r t s and c r a f t s . . . auditorium and special programs ) purpose the auditorium with s p e c i a l programs w i l l p r o v i d e e d u c a t i o n , i n f o r m a t i o n and entertainment to a l l users of the ccc f a c i l i t y . t h i s embraces a d i v e r s e group of a u d i e n c e - r e l a t e d a c t i v i t i e s , i n c l u d i n g l e c t u r e s , movies, c o n c e r t s , and programs f o r group a c t i v i t i e s such as b r i d g e c l a s s e s , c a r d p a r t i e s , bingo and o t h e r s . c l a s s e s and meetings w i l l provide a d u l t education and w i l l develop d i v e r s e i n t e r e s t s and p r e f e r e n c e s , f o r example: poetry w r i t i n g , s i n g - a - l o n g , c h o r a l group, typing, l o c a l h i s t o r y , greenhouse workshop and many o t h e r s . ) f u n c t i o n a l d e s c r i p t i o n the auditorium w i l l be l o c a t e d i n the core centre with an easy access from the main concourse. the p r i n c i p a l component w i l l be the assembly h a l l which w i l l accommodate approximately people. t h i s t h e s i s assumes t h a t there w i l l be frequent p a r t i c i p a t i o n drawn from the p o i n t grey community. t h e r e f o r e , an auditorium with a stage, back stage and p r o j e c t o r booth w i l l be w e l l equipped to c r e a t e the best environment f o r s e n i o r s i n terms of s e e i n g as w e l l as f o r h e a r i n g . furthermore, the audi- torium w i l l be designed as f u l l y a c c e s s i b l e space f o r wheel- c h a i r r e s i d e n t s . here, a l l a c t i v i t i e s as l i s t e d e a r l i e r , w i l l take p l a c e . in f r e e time, between the scheduled events, the auditorium w i l l be used by r e s i d e n t s f o r r e h e a r s a l s of the i n - strumental, t h e a t r e and c h o r a l groups. close to the auditorium, there w i l l be l o c a t e d a number of classrooms with a view and access to outdoor a c t i v i t i e s . storage f o r f u r n i t u r e and equipment w i l l be l o c a t e d c o n v e n i e n t l y a l s o near t h a t area. washroom f a c i l i t i e s f o r men and women and a cloak-room w i l l be c l o s e i n the main concourse. the auditorium w i l l be l e a s e d to other o r g a n i z a t i o n s as w e l l i n order to keep t h i s f a c i l i t y f i n a n c i a l l y f e a s i b l e . t h i s may be an a d d i t i o n a l f a c t o r i n the r e l a t i o n s h i p between the ccc and the business community. table - .--auditorium and s p e c i a l programs space program component net unit area m remarks . auditorium . m . m /person . stage . m . backstage . m . storage . m . p r o j e c t i o n booth . m . classroom . m - persons . classroom . m - persons . meeting rm/game rm . m - persons total: . m references: jordan, joe. s e n i o r center design. , p. . burris-mayer, harold and e. cole. theatres and auditoriums. . back sta&e stage prox e.o th audl- t o r i u m ^ ™ ^ " stor. c l a s s r m . meet. game rm. pro&. jdir. t main ~ j [concoursej f i g . - auditorium and s p e c i a l programs . . . administration . o b j e c t i v e s the main o b j e c t i v e of the a d m i n i s t r a t i o n s u i t e i s to provide f o r the o v e r a l l monitoring and c o n t r o l of the ccc f a c i l i t y . t h i s u n i t w i l l be r e s p o n s i b l e f o r the g e n e r a l s u p e r v i s i o n of the s t a f f , management of f i n a n c e s , l i a i s o n with the p u b l i c and c o o r d i n a t i o n among a l l major u n i t s of the ccc. the s t a f f w i l l need numerous o f f i c e s to c a r r y out t h e i r d u t i e s e f f i c i e n t l y . at t h i s stage of the program i assume o n l y g e n e r a l g u i d e l i n e s i n terms of the f u n c t i o n and q u a n t i t y . ) f u n c t i o n a l d e s c r i p t i o n a. access the a d m i n i s t r a t i v e s u i t e w i l l be l o c a t e d i n the core centre, c l o s e to the main entrance and adjacent to the main concourse. the g e n e r a l a d m i n i s t r a t i o n o f f i c e s need l i t t l e c o n t a c t with the day-to-day a c t i v i t i e s of the f a c i l i t y , n e v e r t h e l e s s d i r e c t r e l a - t i o n s h i p s are necessary f o r the e x e c u t i v e s . the e x e c u t i v e d i r e c t o r - c o o r d i n a t o r w i l l need an easy access to the g e n e r a l p u b l i c and to the s e n i o r s t a f f . the programs d i r e c t o r w i l l need to be c l o s e to the hub of a l l d a i l y a c t i v i t i e s , s t a f f , p a r t i c i - pants and v o l u n t e e r s . the c l i n i c and r e h a b i l i t a t i o n centre d i r e c t o r w i l l have an access to programs d i r e c t o r and to c l i n i c . the d i r e c t o r of home care and support w i l l have an access to the d i r e c t o r of the long term f a c i l i t y and d i r e c t o r of s o c i a l programs. the long term care d i r e c t o r w i l l have an easy access to the intermediate, extended and r e s p i t e care f a c i l i t i e s . the food d i r e c t o r w i l l have access to the food s e r v i c e s and food f a i r u n i t s . the a d m i n i s t r a t i v e s u p e r v i s o r w i l l be l o c a t e d c l o s e to the general o f f i c e and c o o r d i n a t o r . waiting space w i l l be s u f f i c i e n t enough, with a d i r e c t access to the v i s i t o r s washrooms, and l o c a t e d c l o s e to the main entrance. b. p r i v a c y the a d m i n i s t r a t i v e s u i t e w i l l be d i v i d e d i n t o three p a r t s i n terms of p r i v a c y . planned as p r i v a t e o f f i c e s are those of the: e x e c u t i v e d i r e c t o r , long term care d i r e c t o r , programs d i r e c t o r , home care and support d i r e c t o r , accountant, c l i n i c and r e h a b i l i t a t i o n centre d i r e c t o r , food s e r v i c e s d i r e c t o r . planned as semiprivate o f f i c e s are those of the: a d m i n i s t r a t i v e a s s i s t a n t , program s u p e r v i s o r s , n u t r i t i o n i s t , bookkeepers, custodians, home care s u p e r v i s o r s , home support s u p e r v i s o r s , m a i l room-newsletter o f f i c e , d i r e c t o r of v o l u n t e e r s . general open o f f i c e space: s e c r e t a r i e s , c l e r i c a l a s s i s t a n t s , r e c e p t i o n i s t , v o l u n t e e r s . table - .--administration space program activity centre net area m remarks . c o o r d i n a t o r . m . e x e c u t i v e s e c r e t a r y . m . a d m i n i s t r a t i v e s u p e r v i s o r . m . long term care d i r e c t o r . m . programs d i r e c t o r . m . home care and support d i r . . m . reception and waiting . m . general o f f i c e . m x . m , accounting and personnel . m x . m . records . m . c l i n i c & rehab.centre d i r . . m . m a i l room . m . v o l u n t e e r s ' c o o r d i n a t o r . m . volunteers* room . m . v o l u n t e e r c l e r k . m . s t a f f lounge . m . s t a f f washrooms . m v i s i t o r s washrooms . m . board room . m total: . m references: jordan, joe. s e n i o r center design. , p. ; g a r d i n e r thornton p a r t n e r s h i p , p. . admiw. supervf exec. secre coord rm. staff lounge s t a f f wash. m a i l rm board rm. dir.. l . t c a r e dir. h i .sen • cehtr. volun vol. vol. rfa. coord clerk f i g . - a d m i n i s t r a t i o n s u i t e . . clinic ) purpose an ambulatory care centre i n the ccc w i l l provide medical, d e n t a l and c o u n s e l i n g s e r v i c e s f o r the r e s i d e n t s and the e l d e r l y from the p o i n t grey community. the p r i n c i p a l o b j e c t i v e i s to provide h e a l t h maintenance and h e a l t h promotion. t h i s u n i t f u n c t i o n s w i t h i n the core centre a c t i v i t i e s . residents or p a r t i c i p a n t s i n the ccc programs w i l l be making appointments to come here f o r medical examination, c o u n s e l i n g , and d e n t a l work. other s p e c i a l i s t s such as an o p t o m e t r i s t and d i e t i c i a n w i l l a l s o be a v a i l a b l e by scheduled appointments. ) f u n c t i o n a l d e s c r i p t i o n a c t i v i t i e s i n the c l i n i c w i l l i n c l u d e : r e c e p t i o n of pa- t i e n t s , d o c t o r s ' c o n s u l t a t i o n , u n d r e s s i n g , p h y s i c a l examination, d i a g n o s t i c t e s t s , minor procedures, d r e s s i n g , g i v i n g advice and i n s t r u c t i o n s . the main a c t i v i t y sequences w i l l i n v o l v e p r o f e s - s i o n a l and n o n - p r o f e s s i o n a l s t a f f . in any of these a c t i v i t i e s the c l i n i c w i l l be planned to achieve the f o l l o w i n g o b j e c t i v e s : an easy access f o r the ccc p a t i e n t s or those from the community a r r i v i n g by p r i v a t e or p u b l i c t r a n s p o r t a t i o n . to r e s p e c t the d i g n i t y and p r i v a c y of the p a t i e n t . to s a t i s f y the needs of handicapped p a t i e n t s . the p o s s i b i l i t y of regrouping of f u n c t i o n s w i t h i n the c l i n i c thus to provide space f l e x i b i l i t y . to make sure t h a t the b u i l d i n g be of n o n - i n s t i t u t i o n a l c h a r a c t e r . a. access the r e c e p t i o n i s t ' s counter w i l l be e a s i l y a c c e s s i b l e from the main concourse as w e l l as from the intermediate and extended care f a c i l i t i e s . i t w i l l be connected with the r e h a b i l i t a t i o n centre and pharmacy u n i t s , thus c r e a t i n g one h e a l t h care block. the s o c i a l w e l f a r e and c o u n s e l i n g o f f i c e w i l l have a convenient access to p a t i e n t s from the w a i t i n g / r e c e p t i o n area, but w i l l be l o c a t e d away from other a c t i v i t i e s . there w i l l be separate entrances f o r the s t a f f and p u b l i c . g e n e r a l l y , three f u n c t i o n a l zones i n t h i s u n i t w i l l be d i s t i n g u i s h e d : p u b l i c zone - the entrance lobby, w a i t i n g area, p u b l i c washrooms, shared use zone - the r e c e p t i o n area, examination rooms, s t a f f zone - s t a f f washrooms, workrooms, storages b. p r i v a c y doctor o f f i c e s and examination room w i l l be grouped around the w a i t i n g area. p a t i e n t s ' routes w i t h i n the c l i n i c w i l l not c r o s s s t a f f routes and w i l l not allow f o r views i n t o o f f i c e s , s t o r e s and s t a f f rooms. documents f o r f i l i n g , blood and u r i n e samples; instruments and s t e r i l i z e r s w i l l remain concealed from the p u b l i c view. there w i l l be a s e p a r a t i o n of incompatible types of p a t i e n t s . the w a i t i n g area w i l l be screened v i s u a l l y and a c o u s t i c a l l y . table - . - - c l i n i c space program activity centre net unit area m remarks . w a i t i n g / r e c e p t i o n m . doctor o f f i c e s m x m . examination/treatment room m . d e n t i s t room m . dental l a b o r a t o r y m . s o c i a l worker o f f i c e m . c o u n s e l l i n g o f f i c e m . p u b l i c washrooms f&m m x m t o i l e t s each . . s t a f f washroom f&m l i n e n supply m m t o i l e t s wash-basin wit: . clean u t i l i t y m . s o i l e d u t i l i t y m . equipment storage m total: m gross area: m x . = m references: putsep, e r v i n . modern h o s p i t a l - i n e r n a t i o n a l p l a n n i n g prac- t i c e s . , pp. - ; apra. f a c i l i t i e s program f o r the george derby long term care s o c i e t y " , pp. g - . dewt. labol detft. oper. cleaw utility recef i wait. wash iled rms. utility exam £ first aid ii doct otp — ^ — i main jconcourŝ f i g . - c l i n i c . . pharmacy ) purpose to provide pharmaceutical s e r v i c e s f o r the ccc r e s i d e n t s and the p o i n t grey area r e s i d e n t s . t h i s f u n c t i o n a l component w i l l be r e s p o n s i b l e f o r e n s u r i n g t h a t medications p r e s c r i b e d by p h y s i c i a n s are a v a i l a b l e to the r e s i d e n t s / p a t i e n t s i n a t i m e l y and e f f i c i e n t manner. the b a s i c f u n c t i o n of the pharmacy w i l l be: to c o n t r o l medications i n a l l m e d i c a t i o n rooms of the long term care f a c i l i t i e s : from r e c e i v i n g through storage and d i s t r i b u t i o n ; the r e q u i s i t i o n , storage, compounding, packaging, l a b e l l i n g and d i s p e n s i n g of pharmaceutical items to the r e s i d e n t s and the customers from the community. ) f u n c t i o n a l d e s c r i p t i o n the ccc pharmacy system w i l l be d i v i d e d i n t o two sub- systems. the f i r s t one w i l l c o n s i s t of medication rooms i n the long term care f a c i l i t i e s - - i n c l u s t e r support areas. a monitored usage system f o r d i s p e n s i n g and d i s t r i b u t i n g medications w i l l be used. d a i l y d e l i v e r y to medication rooms w i l l ensure t h a t necessary medications are a v a i l a b l e . however, a l i m i t e d amount of ward stock w i l l be kept i n medication rooms. t h e r e f o r e , the pharmacist's o f f i c e i n the core centre w i l l c a r r y out o r d e r i n g and s u p p l y i n g of the medications. the second one, w i l l c o n s i s t of the pharmacy and d i s p e n s i n g i n the core centre a v a i l a b l e to a l l : the ccc r e s i d e n t s and community customers. t h i s component w i l l i n c l u d e : r e t a i l space, s m a l l l a b o r a t o r y and storage. a. access the pharmacy must be c o n v e n i e n t l y l o c a t e d to c e n t r a l receiv- i n g , the c l i n i c , the r e s i d e n t s and v i s i t o r s , and the c e n t r a l supply - m a t e r i a l s e r v i c e s . to accommodate t h i s , a l o c a t i o n c l o s e to the main concourse, adjacent to the c l i n i c and with easy access to m a t e r i a l s e r v i c e s i s necessary. b. f u n c t i o n the pharmacy i s going to be d i v i d e d i n t o f o u r main f u n c t i o n - a l areas: a d m i n s t r a t i o n , d i s p e n s i n g , p r o d u c t i o n and storage. . the administrative area w i l l c o n s i s t o f : c h i e f p h a r m a c i s t ' o f f i c e , away from the stream of a c t i v i t y but w i t h i n s i g h t of the the p r o d u c t i o n area r e t a i l - c o n t r o l - r e c e p t i o n , f o r r e c e i p t of r e q u i s i t i o n s , v i s i t o r s to the component and c o n t r o l of w a i t i n g area waiting area, designed f o r employees w a i t i n g f o r drugs and f o r r e s i d e n t s and v i s i t o r s employee's washrooms . the production area w i l l be designed to a l l o w a f r e e flow of r e c e i v i n g , p r e p a r i n g , l a b e l l i n g , r e c o r d i n g , and d i s t r i b u t i n g of r e q u i r e d orders or p r e s c r i p t i o n s . . the storage area w i l l be l a r g e enough to accommodate pharma- c e u t i c a l s i n a volume t h a t i s economical to buy and dispense w i t h i n a g i v e n p e r i o d of time. i t w i l l be open d i r e c t l y i n t o the working area and c o n t a i n a walk-in r e f r i g e r a t o r with storage and drawers f o r i n s i d e l o a d i n g , storage and a v a u l t f o r n a r c o t i c s and other c o n t r o l l e d substances. table - .—pharmacy and dispensary space program component net unit area m remarks . p r o d u c t i o n m . storage m . r e t a i l space m . pharmacist's o f f i c e m . waiting area m . s t a f f washroom m total: m gross area: m x . = m . m e d i c a t i o n room * m x . m * area accommodated i n c l u s t e r support components. references: g a r d i n e r thornton p a r t n e r s h i p . burnaby general h o s p i t a l program f o r expansion. , v o l . . apra. f a c i l i t i e s program f o r the george derby long term care s o c i e t y . . d i s c u s s i o n s with pharmacy s t a f f i n london drugs store; w. broadway st. medic. , rm |xc$.ecj t delivery material services —i i i t r. : i i puafc. off. labol cery . , iw>ef uviki main despenmconcourse i i j public f i g . - pharmacy . . . library ) purpose reading i s an important l e i s u r e - t i m e a c t i v i t y f o r the e l d e r - l y . current magazines may be kept i n the c l u s t e r s ' lounges or i n the main concourse s i t t i n g area. more s e r i o u s r e a d i n g needs a separate l i b r a r y . only a few r e s i d e n t s w i l l use t h i s space a t one time, so i t does not need be l a r g e . for those who are s e r i o u s l y i n t e r e s t e d i n music there w i l l be an o p p o r t u n i t y to l i s t e n to music c a s s e t t e s (headphone l i s t e n i n g ) i n a s p e c i a l l y designed r e a d i n g / l i s t e n i n g space i n the l i b r a r y . ) f u n c t i o n a l d e s c r i p t i o n the l i b r a r y w i l l be comprised of a c t i v i t y c e n t r e s : l i b r a r y stacks, r e a d i n g / l i s t e n i n g space and work area. . l i b r a r y stacks w i l l be a s e m i - p u b l i c space f o r storage of books or c a s s e t t e tapes. t h i s space w i l l provide wheelchair access between s h e l v e s . the l i g h t i n g system w i l l be designed to minimize shadows and to a l l o w f l e x i b i l i t y i n l a y o u t . . r e a d i n g / l i s t e n i n g space w i l l be spacious enough to accom- modate t a b l e s with power sources f o r tape decks. room w i l l have a c o u s t i c i n s u l a t i o n , wheelchair access and a view to the outdoor r e c r e a t i o n a l areas. . the work area w i l l be the s t a f f w o r k s t a t i o n f o r s i g n i n g out, r e c e i v i n g , r e p a i r s and monitoring of a c t i v i t i e s . i t w i l l have v i s u a l access to the r e a d i n g / l i s t e n i n g space and l i b r a r y stacks. a. access the l i b r a r y w i l l be s i t u a t e d c l o s e to the main a c t i v i t y area i n the core centre. there w i l l be an easy access from the conser- v a t o r y as w e l l as from other main concourse components. table - .--library space program component net unit area m remarks . l i b r a r y stacks m . r e a d i n g / l i s t e n i n g area m . work area m total m gross area: m x . = m references: apra. f a c i l i t i e s program f o r the george derby long term care s o c i e t y . . d i s c u s s i o n s with the woodwards' l i b r a r y s t a f f , ubc. i r i o u r door i ] area j ^ read/ h-rusteu a r e a l i b r - s t a c k maim iconcoursej f i g . - l i b r a r y . . . staff support facilities ) purpose to provide f a c i l i t i e s ( l o c k e r s , washrooms and lounges) to be used by the s t a f f f o r changing, s t o r i n g c l o t h e s and as a r e s p i t e from r e s i d e n t s , v i s i t o r s and o t h e r s t a f f d u r i n g breaks i n work- i n g hours. ) f u n c t i o n a l d e s c r i p t i o n the s t a f f support f u n c t i o n a l component w i l l provide f a c i l i t i e s f o r the m e d i c a l s t a f f , p r o f e s s i o n a l female and male s t a f f , n o n - p r o f e s s i o n a l female and male s t a f f . lockers w i l l be c e n t r a l i z e d f o r the m a j o r i t y of s t a f f but d e c e n t r a l i z e d f o r the f o l l o w i n g program components: - m a t e r i a l s e r v i c e s - b u i l d i n g s e r v i c e s - p l a n t s e r v i c e s a. in the intermediate care f a c i l i t y , there w i l l be approxima- t e l y f u l l time s t a f f with the f o l l o w i n g s u b d i v i s i o n : % - l e v e l % - l e v e l % - l e v e l t o t a l p r o f e s s i o n a l s t a f f = ( % of the e n t i r e s t a f f ) . data from mrs. barbara parson, r e h a b i l i t a t i o n c o n s u l t a n t , vancouver health department). b. in the extended care f a c i l i t y , there w i l l be aproximately s t a f f (data from ms. june nakamoto, d i r e c t o r nursing s e r v i c e s , long term care, u n i v e r s i t y h o s p i t a l , ubc s i t e ) note: a t the present time there are no o f f i c i a l g u i d e l i n e s f o r s t a f f i n g extended care u n i t s ( i n f o r m a t i o n from ms. leah h o l l i n s , nursing c o n s u l t a n t , m i n i s t r y of health, v i c t o r i a ) . a. access the s t a f f support f u n c t i o n a l component w i l l be l o c a t e d convenient to s t a f f p a r k i n g and to p u b l i c t r a n s p o r t a t i o n . i t w i l l have an easy access to a l l work areas. b. f a c i l i t i e s a. p r o f e s s i o n a l male s t a f f locker room, shower/washroom and lounge w i l l be l o c a t e d i n c l o s e to the c l i n i c , pharmacy and r e h a b i l i t a t i o n centre, as w e l l as, to the intermediate and extended care f a c i l i t i e s . b. p r o f e s s i o n a l female s t a f f locker room, shower/washroom and lounge f o r the r e g i s t e r e d n u r s i n g s t a f f ; a l l are p a r t of the c e n t r a l i z e d s t a f f f a c i l i t i e s , w i l l be l o c a t e d i n c l o s e p r o x i m i t y to the intermediate and extended care f a c i l i t i e s , as w e l l as, to the c l i n i c and r e h a b i l i t a t i o n centre. c. n o n - p r o f e s s i o n a l female s t a f f f a c i l i t i e s f o r nursing support s t a f f w i l l be l o c a t e d as i n p o i n t b. d. n o n - p r o f e s s i o n a l male s t a f f f a c i l i t i e s f o r nursing support s t a f f and o t h e r male personnel w i l l be l o c a t e d as i n p o i n t b. g e n e r a l l y , l o c k e r rooms w i l l be designed as open areas d i v i d e d by arrangements of banks of l o c k e r s . lockers to be "x "x " high with space between f o r a bench f o r changing shoes. table - . — s t a f f support f a c i l i t i e s space program components net area m remarks p r o f e s s i o n a l male: locker room . shower/washroom . shower, l a v a t o r i e s + t o i l e t s . lounge . p r o f e s s i o n a l female s t a f f : locker room . shower/washroom . showers + l a v a t o r i e s + t o i l e t s lounge . common. n o n - p r o f e s s i o n a l female s t a f f : locker room . shower/washroom . lounge . n o n - p r o f e s s i o n a l male s t a f f locker room . shower/washroom . showers, l a v a t o r i e s + t o i l e t s lounge . common f o r a l s t a f f . total: . m gross area: . x . . m references: apra. f a c i l i t y program f o r the george derby long term care s o c i e t y . . g a r d i n e r thornton p a r t n e r s h i p . burnaby general h o s p i t a l program f o r expansion. , v o l . . . . laundry services ) purpose to p r o v i d e f o r laundry s e r v i c e s f o r the intermediate and extended care c l u s t e r s by r e c e i v i n g , c l e a n i n g and d i s t r i b u t i n g of r e s i d e n t s ' p e r s o n a l c l o t h i n g . laundry s e r v i c e s w i l l a l s o monitor the c o l l e c t i o n and d i s t r i b u t i o n of ward l i n e n s , the p r o c e s s i n g of which w i l l be c o n t r a c t e d out to other commercial laundry s e r v i c e s and w i l l u t i l i z e a l i n e n c a r t system. ) f u n c t i o n a l d e s c r i p t i o n clean l i n e n c a r t s from the loading dock w i l l be h e l d i n the clean l i n e n area a w a i t i n g d i s t r i b u t i o n to the clean supply rooms. s o i l e d l i n e n w i l l be c o l l e c t e d i n designated s o i l e d u t i l i t y rooms f o r pick-up and d e l i v e r e d to the s o i l e d h o l d i n g area i n the main laundry near the loading dock. r e s i d e n t s ' items w i l l be p i c k e d up from the r e s i d e n t c l u s t e r s , s o r t e d f o r p r o c e s s i n g and minor r e p a i r s , then w i l l be washed and d r i e d i n the laundry f a c i l i t i e s on s i t e . however, f o r the intermediate care r e s i d e n t s there w i l l be an a d d i t i o n a l p e r s o n a l laundry f a c i l i t i e s a v a i l a b l e ( washer and dryer) i n each c l u s t e r support to p r o v i d e an o p p o r t u n i t y f o r r e s i d e n t s to wash t h e i r p e r s o n a l c l o t h i n g by themselves. a. access the laundry s e r v i c e s f a c i l i t y w i l l be l o c a t e d i n the core centre with an easy access to a l l intermediate and extended care c l u s t e r s as w e l l to m a t e r i a l s e r v i c e s with s h i p p i n g and receiv- i n g area. table - .--laundry s e r v i c e s space program component net unit area m remarks . clean l i n e n h o l d i n g . ra . s o i l e d l i n e n h o l d i n g . m . resident laundry . m . c a r t c l e a n i n g . ra total . m gross area: m x . = . m references: apra. f a c i l i t i e s program f o r the george derby long term care s o c i e t y . . . . plant services ) o b j e c t i v e s ; . to provide f a c i l i t i e s r e q u i r e d f o r the maintenance, o p e r a t i o n and s e c u r i t y of the whole ccc: . r e s p o n s i b l i t y to maintain a l l b u i l d i n g s and equipment i n good c o n d i t i o n and f u n c t i o n i n g ; . r e s p o n s i b l i t y f o r the o p e r a t i o n of b o i l e r s , pumps, fans, e l e v a t o r s and other mechanical equipment; . r e s p o n s i b l i t y f o r the ground-maintenance, p a r k i n g c o n t r o l , f i r e s a f e t y and watchman s e r v i c e ; ) f u n c t i o n a l d e s c r i p t i o n b a s i c a l l y the f u n c t i o n s may be s u b d i v i d e d i n t o two groups: . p l a n t maintenance . p l a n t o p e r a t i o n in t h i s s e c t i o n the p l a n t maintenance f a c i l i t i e s are d e s c r i b e d o n l y ( o f f i c e space and workshops). for the p l a n t operation please r e f e r to the b u i l d i n g and m a t e r i a l s e r v i c e s s e c t i o n s r e s p e c t i v e l y . b. access the p l a n t s e r v i c e s f a c i l i t y w i l l be l o c a t e d i n the core centre i n c l o s e p r o x i m i t y to the m a t e r i a l and b u i l d i n g s e r v i c e s f a c i l i t i e s . i t w i l l provide an o f f i c e f o r the p l a n t - s u p e r i n t e n d - ent who w i l l be r e s p o n s i b l e f o r the maintenance department; r e p o r t s to and works with the a d m i n i s t r a t i o n department to main- t a i n p l a n t e f f i c i e n c y . t h i s o f f i c e w i l l be adjacent to the work- shops. lockers, lounge and washroom f a c i l i t i e s which w i l l serve a l l maintenance personnel. m a t e r i a l storage w i l l accommodate space f o r lumber, e l e c t r i c a l s u p p l i e s , plumbing s u p p l i e s and p a i n t , while the general workshop w i l l provide space f o r a l l maintenance t a s k s . s t a f f w i l l a l s o be i n v o l v e d i n the grounds care and maintenance, with a l l necessary equipment and m a t e r i a l s being s t o r e d i n grounds maintenance storage. the v e h i c l e holding area f o r the enclosed storage and washing of v e h i c l e s w i l l a l s o be provided w i t h i n t h i s f u n c t i o n a l component. table - .--plant s e r v i c e s space program component net unit area m remarks . p l a n t - s u p e r i n t e n d e n t o f f i c e . m . lockers . m up to l o c k e r s . washroom/shower . m t, s, w . general workshop . m . m a t e r i a l storage . m . grounds mainten.storage . m . v e h i c l e h o l d i n g . m total . m references: apra. f a c i l i t i e s program f o r the george d e r b y l o n g term care s o c i e t y . . . . building services ) purpose to maintain c l e a n and s a n i t a r y c o n d i t i o n s throughout the continuum of care complex. (the independent l i v i n g c l u s t e r s are served s e p a r a t e l y ) . a l s o , to c o l l e c t and dispose of a l l r e f u s e . ) f u n c t i o n a l d e s c r i p t i o n the b u i l d i n g s e r v i c e s f a c i l i t y w i l l u t i l i z e the c e n t r a l i z e d f a c i l i t i e s f o r storage and c l e a n i n g equipment with s a t e l l i t e j a n i t o r s rooms throughout the f a c i l i t y . a. access t h i s f a c i l i t y w i l l be l o c a t e d i n the core centre c e n t r a l area ( i n the basement) with an easy access to the m a t e r i a l s e r v i c e s f a c i l i t y . s t a f f w i l l r e p o r t at the beginning of each s h i f t to a c e n t r a l area to r e c e i v e i n s t r u c t i o n s and p i c k up equipment as may be r e q u i r e d . there w i l l be s t o r e s f o r supply and the housekeeping u t i l i t y c a r t s . the e x e c u t i v e housekeeper's o f f i c e w i l l d i r e c t and c o - o r d i n a t e the housekeeping program. i t w i l l be l o c a t e d adjacent to the a s s i s t a n t and c l e r i c a l o f f i c e which i n t u r n w i l l prepare work schedules, time schedules and r e p o r t s . in the v i c i n i t y , there w i l l be mattress and bed storage room to s t o r e spare or broken mattresses and beds. housekeeper w i l l arrange r e p a i r s . garbage w i l l be c o l l e c t e d by j a n i t o r s a t r e s i d e n t s c l u s t e r s and t r a n s p o r t e d by c a r t s to i n c i n e r a t o r room. i t w i l l be l o c a t e d adjacent to the maintenance workshops and c o n v e n i e n t l y f o r garbage c o l l e c t i o n . throughout the core centre area, there w i l l be j a n i t o r rooms a t the r a t e of one per m of f l o o r area minimum. in the intermediate and extended care f a c i l i t i e s , there w i l l be a j a n i t o r room i n each c l u s t e r support. table - . — b u i l d i n g s e r v i c e s space program component net unit area m remarks . e x e c u t i v e housekeeper's o f f i c e . m . a s s i s t a n t and c l e r i c a l o f f i c e . in . housekeeping supply room . m . housekeeping equipment room . m . mattress and bed stg. room . m . i n c i n e r a t o r room . m total: . m gross area: m x . = . m references: g a r d i n e r thornton p a r t n e r s h i p . burnaby general h o s p i t a l program f o r expansion. , v o l . . . . . material services ) purpose g e n e r a l l y to provide f o r the r e c e i p t , d i s t r i b u t i o n and d i s p o s a l of a l l s u p p l i e s , equipment and s e r v i c e s f o r the e n t i r e ccc f a c i l i t y . s p e c i f i c a l l y : to review, approve, buy and d e l i v e r a l l s u p p l i e s ordered by a l l f a c i l i t i e s ; to r e c e i v e , s o r t , weigh, and uncrate a l l goods d e l i v e r e d ; to s t o r e new and o b s o l e t e goods and dispose of the l a t t e r ; to arrange f o r r e p a i r s which can not be done by the ccc maintenance; to maintain an i n v e n t o r y of equipment and s u p p l i e s i n s t o r e s ; to d i s t r i b u t e goods to a l l f u n c t i o n a l components. ) f u n c t i o n a l d e s c r i p t i o n a l l d e l i v e r i e s and pick-up of s u p p l i e s and equipment w i l l be through the m a t e r i a l s e r v i c e s f a c i l i t y . the m a t e r i a l s management manager w i l l be r e s p o n s i b l e f o r c o - o r d i n a t i o n and c o n t r o l of a l l s u p p l i e s , purchasing and storage. as a supply s e r v i c e , t h i s department w i l l maintain c l o s e a r e l a t i o n s h i p with the pharmacy, general s t o r e , and l i n e n s e r v i c e s . a l l goods w i l l pass through c e n t r a l r e c e i v i n g and s h i p p i n g with the e x c e p t i o n of food ser- v i c e s and pharmacy. in the s h i p p i n g counter incoming shipments w i l l be opened and checked before d i s t r i b u t i o n . i t w i l l have m o n i t o r i n g and c o n t r o l l i n g access to and from the loading dock, c e n t r a l s t o r e s with s h i p p i n g and r e c e i v i n g . c e n t r a l general s t o r e s w i l l provide storage f o r a l l n o n - d i e t a r y s u p p l i e s goods. in p r o x i m i t y to r e c e i v i n g and adjacent to the food s e r v i c e s f a c i l i t y , there w i l l be the bulk food storage. p e r i s h a b l e s w i l l be s t o r e d w i t h i n the food s e r v i c e s f a c i l i t y . used equipment storage w i l l p r o v i d e space f o r used f u r n i t u r e and equipment p r i m a r i l y from the core centre f u n c t i o n a l components. there w i l l a l s o be the v o l a t i l e l i q u i d storage used by the pharmacy and flammable store f o r flammable m a t e r i a l s . l o c a t i o n of these w i l l have to comply with the b u i l d i n g and f i r e code r e g u l a t i o n s . the resident s t o r e s ( a c c e s s i b l e to r e s i d e n t s ) w i l l provide storage space f o r the ic and ec r e s i d e n t s ' p e r s o n a l belongings such as l a r g e s u i t c a s e s , f u r n i t u r e which can't be kept or s t o r e d i n the long term care r e s i d e n t i a l c l u s t e r s . table - .--material s e r v i c e s space program components net unit area m . m a t e r i a l management manager's o f f i c e . m . purchasing agent's o f f i c e . m . c l e r k o f f i c e . m . storekeepers o f f i c e . m . d i s p a t c h e r s o f f i c e . m . r e c e i v i n g area . m . s h i p p i n g counter . m . general s t o r e s . m . bulk food s t o r e . m .used equipment storage . m . v o l i t i l e l i q u i d storage . m .flammable store . m total . m gross area: . m x . . m references: g a r d i n e r thornton p a r t n e r s h i p . burnaby general h o s p i t a l program f o r expansion. , v o l . . . . facility common outdoor space ) purpose in n i c e weather many o l d e r people take advantage of o p p o r t u n i t i e s f o r outdoor a c t i v i t i e s p r o v i d i n g them with f r e s h a i r , e x e r c i s e , and change of environment. these a c t i v i t i e s i n c l u d e s o c i a l i z i n g , game p l a y i n g , and being seen ( z e i s e l , p. ). more h e a l t h y l i f e - s t y l e s and improved medical care have c o n t r i b u t e d to the c r e a t i o n of a new g e n e r a t i o n of a c t i v e and more mobile e l d e r l y . for them, r e c r e a t i o n a l and s o c i a l a c t i v i t i e s are a p p e a l i n g . the cc complex w i l l provide a v a r i e t y of outdoor a c t i v i t i e s responding to the p r e f e r e n c e s and a b i l i t i e s of the ccc r e s i d e n t s . for a c t i v e "go-go" r e s i d e n t s and v i s i t o r s , there w i l l be f a c i l i t i e s s i m i l a r to those i n the e x i s t i n g r e t i r e m e n t communities. these f a c i l i t i e s w i l l p r o v i d e s t i m u l a t i o n , enhance r e s i d e n t s ' s e l f - e s t e e m and c r e a t e an o p p o r t u n i t y f o r s o c i a l i n t e r a c t i o n and i n t e g r a t i o n with the p o i n t grey community. for l e s s mobile e l d e r l y , there w i l l be a " t h e r a p e u t i c park" designed to meet the needs of the p h y s i c a l l y f r a i l . for those who are i n t e r e s t e d i n h o r t i c u l t u r e the garden p l o t s area w i l l p r o v i d e e x e r c i s e , c o n t a c t with nature and p e r s o n a l reward and s a t i s f a c t i o n . ) f u n c t i o n a l d e s c r i p t i o n the f a c i l i t y common space w i l l be comprised of f o u r f u n c t i o n a l components: the country club, the r e h a b i l i t a t i o n outdoor areas, the garden centre and park. a l l these components w i l l form a continuous open space with v a r i e t y of f l o w e r i n g shrubs, p e r e n n i a l s , t r e e s and water f e a t u r e s to ensure v i s u a l d i v e r s i t y at a l l times of the year. a. the country club along the main p e d e s t r i a n walkway, with an easy access to auditorium and s p e c i a l programs component, v a r i o u s games w i l l be l o c a t e d : ( a c t i v e areas) croquet, bowling lawn, m i n i - g o l f , horseshoes, v o l l e y b a l l , badminton c o u r t s and s h u f f l e b o a r d . those areas w i l l be supplemented with shaded s p e c t a t o r benches (passive a r e a s ) . storage sheds f o r outdoor r e c r e a t i o n a l equipment w i l l be provided nearby. b. r e h a b i l i t a t i o n outdoor areas there w i l l be two components. the f i r s t - gymnastic lawn w i l l be a component of the r e h a b i l i t a t i o n centre (the core centre) designed as an outdoor e x t e n s i o n of the f i t n e s s and gymnasium space. the second component w i l l be s p e c i a l l y designed rose and herb gardens with r a i s e d p l a n t e r s . these gardens w i l l be developed w i t h i n the t h e r a p e u t i c park and w i l l help to organize h o r t i c u l t u r e therapy s e s s i o n s . both w i l l be l o c a t e d near the long term care r e s i d e n t i a l c l u s t e r s . research has shown ( t a y l o r ) t h a t h o r t i c u l t u r e therapy g i v e s p a t i e n t s a l i n k with l i f e and a sense of being needed. i t a l s o p r o v i d e s an o p p o r t u n i t y f o r p h y s i c a l a c t i v i t i e s and s o c i a l i n t e r a c t i o n . for those with v i s u a l impairments, i t p r o v i d e s an absorbing a c t i v i t y t h a t does not s t r a i n t h e i r eyes. although some of the e l d e r l y need a s s i s t a n c e i n working with p l a n t s , the p l e a s u r e of working with p l a n t s i s not lessened by a d i s a b i l i t y . for example, i n the extended care u n i t at the ubc s i t e h o s p i t a l h o r t i c u l t u r e therapy has proved to be very s u c c e s s f u l . the i n t e r e s t i n gardening does not end when c l a s s i s over. people have p l a n t s on t h e i r window s i l l s and bedside t a b l e s and of course the care of them i s ongoing. p l a n t s do c r e a t e a homelike touch i n an i n s t i t u t i o n a l - h o s p i t a l s e t t i n g . moreover, the i n t e r e s t i n gardening i s mentally s t i m u l a t i n g and the l e a r n i n g experience can be shared with others ( t a y l o r ). c. the garden centre for more a c t i v e r e s i d e n t s and v i s i t o r s i n t e r e s t e d i n gardening there w i l l be an o p p o r t u n i t y to maintain a "working" atmosphere i n the garden c e n t r e . research has shown (carstens , p. ), t h a t there i s a growing i n t e r e s t i n gardening among e l d e r l y people. for example, i n l e i s u r e world - laguna h i l l s i n c a l i f o r n i a , the a c t i v e r e t i r e m e n t community has two garden c e n t r e s . "the more recent one, approximately f i v e a c r e s , p r o v i d e s garden p l o t s i n a d d i t i o n to p o t t i n g sheds, green- houses and restrooms." the ccc garden centre w i l l be l o c a t e d some d i s t a n c e from the main a c t i v i t i e s to allow f o r easy v e h i c u l a r access f o r dropping o f f m a t e r i a l s and b e t t e r sun exposure. i t i s not the o b j e c t i v e of t h i s t h e s i s at t h i s stage of the program develop- ment to decide on the s i z e of the garden centre. we can assume however, t h a t garden p l o t s 'xl ' with a p o s s i b i l i t y f o r f u t u r e expansion w i l l be s u f f i c i e n t at the beginning. t h i s centre w i l l give the r e s i d e n t s an o p p o r t u n i t y to manage i t s a f f a i r s by themselves. minimal r e n t a l f e e s f o r the use of garden p l o t s may be charged to purchase community t o o l s and to cover maintenance c o s t s . d. park a park w i l l l i n k other a c t i v i t i e s together, but a t the same time w i l l p r o v i d e a d d i t i o n a l c h o i c e s f o r the r e s i d e n t s . during n i c e weather s p e c i a l c u l t u r a l events such as c o n c e r t s , drama performances or meetings w i l l take p l a c e i n the outdoor t h e a t r e designed f o r s p e c t a t o r s . the park w i l l a l s o be a r e t r e a t f o r those who need more q u i e t and secluded areas. they o c c a s i o n a l l y r e t r e a t to these areas when they are i n a contemplative mood, want to take a walk without meeting o t h e r s , or need a change of scenery from t h e i r s m a l l apartment u n i t . an important aspect of r e t r e a t s i s t h a t they o f f e r a d d i t i o n a l c h o i c e s to o l d e r r e s i - dents. while the goal of r e t r e a t may be a q u i e t n i c e p l a c e , the process of g e t t i n g there may be j u s t as important to o l d e r r e s i d e n t s ( z e i s e l , p. ). the ccc s i t e o f f e r s a v a r i e t y of o p p o r t u n i t i e s f o r r e s i d e n t s who want j u s t to walk on the grounds a t some d i s t a n c e from the housing, somewhat removed from s i g h t , who would l i k e to enjoy a n a t u r a l v i s t a to the north shore mountains. the program r a t i o - nale i s t h a t the park be designed as a t h e r a p e u t i c park. in order to meet the s o c i a l , p s y c h o l o g i c a l and environmental needs of the r e s i d e n t s the park: . w i l l o f f e r a v a r i e t y of nature environments such as rose garden, herb garden, p i c n i c areas with gazebo, ponds with water f e a t u r e s , ducks and geese. . w i l l maximize, p h y s i c a l and mental s t i m u l a t i o n by p r o v i d i n g v a r i e t y of walkway s u r f a c e s ( p r o s t h e t i c d e s i g n ) . for example, w e l l - t e x t u r e d s u r f a c e s allow r e s i d e n t s to f e e l the concrete under f o o t while reducing the p o s s i b i l i t y of s l i p p i n g . a wooden b r i d g e may heighten the a c c o u s t i c a l s t i m u l a t i o n of walking (carsten , p. ). . w i l l provide f o r freedom of p h y s i c a l movement and at the same time w i l l secure p r o t e c t i o n . the park w i l l be b a s i c a l - l y w i t h i n the ccc f a c i l i t y , but there w i l l be a connection with the e x i s t i n g j e r i c h o park. a supplementary i s s u e i would l i k e to review b r i e f l y i s pet therapy. recent s t u d i e s draw a t t e n t i o n to the b e n e f i t s of the simple presence of companion animals without any d i r e c t c o n t a c t (watching)(katchner ). in my r e s e a r c h paper on "pet therapy: p r e l i m i n a r y research study on e f f e c t i v e n e s s of use of animal l i v i n g outdoors w i t h i n i n s t i t u t i o n a l environments", i found t h a t i n s p i t e of management d i f f i c u l t i e s , there was an i n t e r e s t among e l d e r l y r e s i d e n t s i n the model "zoo i d e a " on the grounds of a long term care f a c i l i t y . one r e s i d e n t suggested roe-deer, peacocks or r a b b i t s as companions of the e l d e r l y r e s i d e n t s . at t h i s stage of program development i can o n l y suggest a need i n the next phase to review the p o s s i b i l i t y of p r o v i d i n g c o n t a c t with animals. a design response to t h i s o b j e c t i v e could be, f o r example, a pond with f i s h and b i r d s such as ducks or geese. the area requirements f o r the ccc f a c i l i t y common areas are summarized i n the t a b l e - . table - . - - f a c i l i t y common space space program type of activity dimensions in ft. ft.sq. m average no.of participants . country club - bowling lawn ( e i g h t a l l e y s ) x , , - clock g o l f ' ( c i r c l e ) - m i n i g o l f , , - croquet x , - horseshoes x (x ) , - v o l l e y b a l l x (x ) , - s h u f f l e b o a r d x (x ) , or badminton x , . r e h a b i l i t a t i o n herbs garden , rose garden , gymnastic lawn , . garden centre garden p l o t s x , f o r r e s . . park picnics-bbq acres , s e v e r a l r e t r e a t s . w i t h i n park outdoor t h e a t r e , . m / pers total: , = acres references: carstens , p. de c h i a r a , joseph and lee e. koppelman. s i t e planning standards. . . garden centre p i c k bbq. expl. retr. . fcehabil tation gyn\. gard lawn hort- ther. outboot theatre .park ; = l - irehab ut- i centre i i t i n d e p living* x n t e r m . c a r e e x t e n d c a r e i h j a u d i t o r , i - { p r o g r a m s j i main i con course i -t public caoa. bowl. mini volley ba>m. golf ball . c o u n t r y c l u b f i g . - common outdoor space . . parking and road network within the facility purpose to provide an organized and c o n t r o l l e d system f o r accommo- d a t i n g the v e h i c u l a r movement and p a r k i n g demands of the housing and long term care c l u s t e r s s t a f f and v i s i t o r s . short term s e r v i c e p a r k i n g f o r c a r s , vans, t r u c k s making d e l i v e r y to the f a c i l i t y . f u n c t i o n a l d e s c r i p t i o n : a l l p a r k i n g areas w i l l be c l e a r l y i d e n t i f i e d f o r designated use and ease of access. r e s i d e n t i a l p a r k i n g w i l l be i n c o r p o r a t e d i n t o the independent l i v i n g c l u s t e r area. s t a f f p a r k i n g w i l l be separated and l o c a t e d c l o s e to a s t a f f main e n t r y . p u b l i c park- i n g w i l l p r o v i d e a d i r e c t access to the core centre. s e r v i c e p a r k i n g w i l l provide a d i r e c t access to the s h i p p i n g / r e c e i v i n g area i n the core centre. table - . — p a r k i n g areas program component no of parking spaces area remarks ind. l i v i n g housing a. r e n t a l housing b. co-op housing c. s t r a t a - t i t l e v i s i t o r s i.c. f a c i l i t y b.c. f a c i l i t y core centre s t a f f approximately . m , . m , . m , . m . m . m , . m space each u n i t s space each dw. u n i t . space each dw. u n i t % of r e q u i r e d number of spaces total: , . m references: c i t y of vancouver p a r k i n g by-law: space per u n i t s i n bcmhc housing. space per s t r a t a t i t l e or co-op houisng space per m s l e e p i n g area i n the ic f a c i l i t y space per beds or f o r each m gross area i n the ec f a c i l i t y . space f o r each . m of assembly area i n the core centre. chapter - feasibility of program implementation on the selected site: thesis conclusion: chapter summary: chapter c o n c e n t r a t e s on the f e a s i b i l i t y of implementing the f a c i l i t y program on the s e l e c t e d t e s t s i t e . the e v a l u a t i o n has been based on o p p o r t u n i t i e s and c o n s t r a i n t s a s s o c i a t e d with the t e s t s i t e and how they a f f e c t program implementation. guide- l i n e s and recommmendations are l i s t e d as to how the program o b j e c t i v e s c o u l d be met. the housing development o p t i o n s have been presented i n the form of f o u r p a t t e r n s . the chapter concludes with f i n d i n g s and the t h e s i s c o n c l u s i o n . evaluation # : s i t e l o c a t i o n and s i z e . . . rationale s t u d i e s have shown t h a t the l o c a t i o n of f a c i l i t i e s a f f e c t s the e l d e r l y ' s happiness, mental w e l l - b e i n g and even h e a l t h . for o l d e r people the a v a i l a b i l i t y of neighbourhood s u p p o r t i v e s e r v i c e s may make the d i f f e r e n c e between a p o s i t i v e and negative outcome or even between remaining i n the community and becoming i n s t i t u t i o n a l i z e d (lawton , p. ). in order to s a t i s f y the e l d e r l y ' s p s y c h o l o g i c a l and p h y s i c a l needs the most important c r i t e r i o n f o r e v a l u a t i n g a s i t e i s a c c e s s i b i l i t y to d e s i r e d s e r v i c e s and f a c i l i t i e s . table - p r o v i d e s data from s e v e r a l s t u d i e s (lawton ) and i n d i c a t e s the v a r i e t y of l i f e table - uses of resources, t r a v e l time and d i s t a n c e t o resources. resource median % using modal frequency of use (users) modal frequency of use (all) modal travel time (users) modal use distance " modal nearest distance" grocery /week or /week min. - blocks - blocks physician several/year several/year is min. > blocks - blocks visit one or more children - /week /week to never min. < blocks shopping other than grocery or /month never church /week /week min. - blocks bank /month - blocks - blocks visit friends or /weck never min. - blocks visit relatives other than children several/year never min. beauty/barber shop - blocks restaurant several/year > blocks - blocks park - blocks clubs, meetings /month never min. > blocks entertainment /month never min. > blocks > blocks library > blocks •data derived from estimates by bourg ( ), cantor ( ). carp( , c). lawton and nahemow( ), and nahemow and kogan ( ) unless otherwise noted. •"cantor (in press). new york city poverty-area residents. 'newcomer ( ), public housing tenants. from handbook of the psychology of aging, edited by james e . birren and k. warner schaie. o by litton educational publishing, inc. reprinted by permission of van nostrand reinhold company. source: lawton, powell m. environment and aging. , table - . p. . s u p p o r t i n g , l i f e e n r i c h i n g and s o c i a l resources used by the m a j o r i t y of independent o l d e r people. i t can be seen t h a t t w o - t h i r d s or more shop a t a grocery s t o r e , do r e g u l a r shopping, v i s i t c h i l d r e n and a t t e n d church. almost a l l v i s i t a p h y s i c i a n and over % never v i s i t f r i e n d s , but those who do, v i s i t very f r e q u e n t l y . for most of these resources frequency of use was a s s o c i a t e d with d i s t a n c e . since many e l d e r l y people may no longer own a c a r or can not d r i v e one, walking i s the e a s i e s t and l e a s t expensive means of t r a n s p o r t a t i o n . distance i s t h e r e f o r e a c r i t i c a l f a c t o r . a c c o r d i n g to data p r o v i d e d by cmhc "housing the e l d e r l y " , p. there i s a s c a l e of importance f o r community f a c i l i t i e s and c r i t i c a l d i s t a n c e s p e r c e i v e d by o l d e r people: . grocery store - - b l o c k s ( - m) . bus stop - - b l o c k s ( - m) . church - - m . drug store - b l o c k s ( m) . c l i n i c or h o s p i t a l - - m . bank - m . s o c i a l center - m . l i b r a r y - m s t u d i e s have shown (lawton ; cmhc ) t h a t the best l o c a t i o n f o r e l d e r l y l i v i n g i s a c e n t r a l urban s i t e t h a t i s con- v e n i e n t to community s e r v i c e s and amenities and a l s o has a low l e v e l of t r a f f i c and c i t y n o i s e . the main f a c t o r i n l o c a t i o n of housing f o r the e l d e r l y i s p r o x i m i t y to "where the a c t i o n i s " : shops, h e a l t h and s o c i a l s e r v i c e s and areas of i n t e r e s t . i d e a l - l y , the e l d e r l y r e s i d e n t s should l i v e w i t h i n two block walking d i s t a n c e of a c t i v i t y c e n t e r s and p u b l i c t r a n s p o r t a t i o n . a good l o c a t i o n f e a t u r e s the f u r t h e r advantage of being a c c e s s i b l e to v i s i t i n g f r i e n d s and r e l a t i v e s . easy access to p u b l i c t r a n s - p o r t a t i o n and downtown amenities allows r e s i d e n t s to continue being a c t i v e members of the community. . . location (see f i g . - ) the " f e d e r a l n a t i o n a l defence lands" s i t e comprises . acres of land and i s l o c a t e d w i t h i n the west p o i n t grey area and has an unique s e t t i n g i n vancouver c l o s e to j e r i c h o beach. the s i t e i s bounded to the north by th avenue; to the south by th avenue; to the east by highbury s t r e e t and to the west by j e r i c h o h i l l school. while zoned at present rs- , the s i t e i s a s u b j e c t of many ideas f o r p o t e n t i a l f u t u r e development. the vancouver p l a n n i n g department, however, recommended t h i s s i t e as an i d e a l background f o r my t h e s i s becouse i t has a p o t e n t i a l f o r an e l d e r l y f a c i l i t y which can maintain l i v a b i l i t y , p r i v a c y and a sense of community by: . r e d u c i n g s i t e coverage when an o p p o r t u n i t y e x i s t s to provide more useable and v i s u a l l y i n t e r e s t i n g open space or to open up q u a l i t y views from the ccc community. . p r o v i d i n g e n c l o s u r e elements such as w a l l s and p l a n t i n g f o r the p o r t i o n of the s u b j e c t s i t e with lower s i t e coverage f i g . - l o c a t i o n and s i z e where there i s a need f o r continuous w a l l s and s t r e e t d e f i n i - t i o n , f o r example along th avenue. . emphasizing the main entrance to the core centre. . p r o v i d i n g b u i l d i n g s i n c l u s t e r s , t h a t are compatible with the o v e r a l l neighbourhood c h a r a c t e r , maintain s t r e e t rhythm and c r e a t e useable open space. although there has been c o n s i d e r a b l e d i s c u s s i o n s on a need to preserve vancouver's s i n g l e f a m i l y neighbourhoods, there i s a growing need f o r new forms of housing on the west side of vancouver, which would allow people to s t a y i n t h e i r own neighbourhoods, when t h e i r s i n g l e f a m i l y houses are no longer s u i t a b l e . moreover, the p o p u l a t i o n of t h i s area i s growing o l d e r and c r e a t e s a new need f o r a supply of necessary h e a l t h care s e r v i c e s . . . opportunities the s u b j e c t s i t e would make a p e r f e c t p l a c e f o r the f u t u r e development of m u l t i - f a m i l y housing as w e l l as a f a c i l i t y f o r s e n i o r s . the p l a n n i n g department suggests f.s.r. = . and r e q u i r e s t h a t new development be compatible with the surrounding area i n f l u e n c e d b a s i c a l l y by apartment developments and s i n g l e f a m i l y housing. t h i s s i t e o f f e r s s e v e r a l advantages such as l o c a t i o n i n the core of the p o i n t grey r e s i d e n t i a l area, easy access to shopping and community s e r v i c e s , walking d i s t a n c e to park and p u b l i c r e c r e a t i o n a l f a c i l i t i e s as w e l l as p r o x i m i t y to u.b.c. . . constraints e x i s t i n g heavy t r a f f i c on th avenue causes noise and p o l l u t i o n . s e v e r a l measures may be recommended at t h i s stage of program development i n order to minimize the p o t e n t i a l noise impact from th avenue, as f o l l o w s : . l o c a t i n g r e s i d e n t i a l p a r t of ccc away from the noise source. . using landscape treatment to help m i t i g a t e noise impacts- green b u f f e r zone. . using m a t e r i a l c o n s t r u c t i o n methods t h a t l i m i t noise t r a n s m i s s i o n such as laminated double g l a z i n g . . l o c a t i n g areas not a f f e c t e d by noise such as c o r r i d o r s -"promenades" to c r e a t e noise b u f f e r . . . conclusion the b e a u t i f u l s e t t i n g and vast land ensures t h a t the ccc f a c i l i t y may maintain l i v a b i l i t y and p r i v a c y by p r o v i d i n g a v a r i e t y of space o p t i o n s from s i n g l e f a m i l y housing to the m u l t i p l e - u n i t housing and commensurate s u f f i c i e n t , v i s u a l l y i n t e r e s t i n g open outdoor areas. the s i z e of the s i t e and type of development a f f e c t the s i t e - p l a n n i n g p a t t e r n . in keeping with the recommendations of the c i t y planning department, the ccc should be a l o w - r i s e development compatible with the surrounding neighbourhoods (see f i g . - ) (rsi - on the south; rm - on the east and north). evaluation # : land use context (see f i g . - ) . . oportunities a. a v a i l a b l e s e r v i c e s on the corner of th avenue and highbury s t r e e t , there i s r e c e n t l y b u i l t commercial complex - j e r i c h o m a l l with l a r g e grocery, drug mart and other r e t a i l and s e r v i c e o u t l e t s . beside t h a t , i n c l o s e p r o x i m i t y , there are two shopping and s e r v i c e s areas. the f i r s t : on th avenue to the e a s t of alma s t r e e t which i s comprised of the bank of montreal, r e s t a u r a n t s , s e v e r a l boutiques and shops. the second: developed around the i n t e r - s e c t i o n s of alma s t r e e t and broadway and th avenue. i t i n c l u - des a new r e t a i l m a l l and a v a r i e t y of r e t a i l o u t l e t s i n c l u d i n g the bank of nova s c o t i a and a post o f f i c e . near the corner of broadway and alma s t r e e t , there i s the canadian legion b u i l d i n g which serves many of s e n i o r s c u r r e n t l y l i v i n g i n t h a t area. b. r e c r e a t i o n a l amenities f u r t h e r to the n o r t h , there i s j e r i c h o beach park and a v a r i e t y of r e c r e a t i o n a l amenities i n c l u d i n g j e r i c h o beach, the j e r i c h o tennis club, the royal vancouver yacht club, museum, and brock house s e n i o r s centre, which serves the growing s e n i o r s ' p o p u l a t i o n w i t h i n the p o i n t grey communities and those l i v i n g i n the vancouver west side. . . constraints although the f a c i l i t y program p r o v i d e s f o r e x t e n s i v e , s p e c i a l l y designed outdoor spaces w i t h i n the s u b j e c t s i t e , »•»/»«« f̂aprm: d g o d o o o o th a v e . d o d d d q d c d d o d ' h b d o d o b b b a d ' a b l * > i . . * : " i s c h c w ! \s f i g . - land use context n e v e r t h e l e s s the p r o x i m i t y of j e r i c h o beach park and j e r i c h o beach would a f f e c t the p h y s i c a l and p s y c h o l o g i c a l need of the ccc r e s i d e n t s . t h i s i s a very important f e a t u r e , s p e c i a l l y f o r the independently l i v i n g s e n i o r s , able and w i l l i n g to purchase t h e i r u n i t s . t h e r e f o r e , a l i n k should be p r o v i d e d between the new f a c i l i t y and the r e c r e a t i o n a l area on j e r i c h o beach. t h i s l i n k c o u l d be a wide bridge o n l y f o r p e d e s t r i a n s or a tunnel (both of course handicapped a c c e s s i b l e ) . option # ; wide bridge with landscaping . i t most s u c c e s s f u l l y extends the v i s u a l c o n t i n u i t y of the ccc to j e r i c h o beach. . i t appears, from the road, to be a s u b s t a n t i a l l i n k to the two p a r t s . . i t allows f o r viewing the mountains on the north shore. . i t i s a safe and convenient p e d e s t r i a n connection. . t r a f f i c volumes on th avenue are u n a f f e c t e d . option # : tunnel . the tunnel c o u l d c r e a t e a s e c u r i t y problem. . there would be an i n t e r r u p t i o n to t r a f f i c , while the tunnel was being c o n s t r u c t e d . . the f e e l i n g of connection between two p a r t s would not be so apparent. . viewing p o t e n t i a l s while walking are e l i m i n a t e d . the l e s s expensive s o l u t i o n would be a p e d e s t r i a n c r o s s i n g , but very i n c o n v e n i e n t f o r the e l d e r l y i n wheelchairs and handicapped persons. . . . conclusion a v a i l a b i l i t y of s e v e r a l b a s i c s e r v i c e s w i t h i n the walking d i s t a n c e and p r o x i m i t y to the r e c r e a t i o n a l amenities on j e r i c h o beach w i l l s a t i s f y p s y c h o l o g i c a l and p h y s i c a l needs of the ccc r e s i d e n t s l i v i n g independently. p r o x i m i t y to u n i v e r s i t y h o s p i t a l ubc s i t e , acute care f a c i l i t y , w i l l be an a s s e t f o r the ccc long term care r e s i d e n t s . t r a n s f e r to t h i s f a c i l i t y by ambulance or other form of t r a n s p o r t a t i o n w i l l a l s o be r e q u i r e d f o r such s e r v i c e s as r a d i o l o g i c a l examinations and l a b o r a t o r y procedures as w e l l as f o r p a t i e n t admissions f o r acute medical, s u r g i c a l or p s y c h i a t r i c c o n d i t i o n s . the ccc f a c i l i t y l o c a t i o n w i t h i n walking d i s t a n c e to neighbourhood r e s i d e n t i a l areas, s p e c i a l l y to the surrounding housing o r i e n t e d to the e l d e r l y , w i l l encourage p o t e n t i a l v i s i t o r s to p a r t i c i p a t e i n the core centre programs and a c t i v i t i e s . the long term care f a c i l i t y , day care and r e s p i t e care w i l l be very convenient f o r the f u t u r e r e s i d e n t s , p a r t i c i p a n t s and t h e i r f a m i l i e s . evaluation # : p u b l i c t r a n s p o r t a t i o n , v e h i c u l a r and p e d e s t r i a n access. . . opportunities a. p u b l i c t r a n s p o r t a t i o n (see f i g . - ) there are two easy accesses to p u b l i c t r a n s p o r t a t i o n , which provide connection with the surrounding areas, k i t s i l a n o , dunbar, k e r r i s d a l e , downtown and ubc. the f i r s t i s on th avenue with a bus stop on the north boundary of the s i t e . the second access i s l o c a t e d f u r t h e r to the south, on broadway s t r e e t . b. v e h i c u l a r access: (see f i g . - ) the present v e h i c u l a r access to the s u b j e c t s i t e i s provided from highbury s t r e e t (three e n t r a n c e s ) , from th avenue (one e n t r a n c e ) , and from th avenue, i n the western p a r t of the s i t e (two e n t r a n c e s ) . c. p e d e s t r i a n access: (see f i g . - ) p e d e s t r i a n movement from the s u b j e c t s i t e w i l l be i n two d i r e c t i o n s : the f i r s t , to the th avenue and s e r v i c e area, bus stops and j e r i c h o r e c r e a t i o n a l amenities and the second, to the broadway shopping area and bus stops. p e d e s t r i a n access to the s i t e should be provided from th avenue (the core centre) and th avenue. since the e x i s t i n g v e h i c u l a r t r a f f i c on th avenue w i l l o b s t r u c t p e d e s t r i a n movement to j e r i c h o park a l i n k (pedes- t r i a n overpass) between the new f a c i l i t y and the r e c r e a t i o n a l area should be provided as i n d i c a t e d i n e v a l u a t i o n # . p u b l i c access to the core centre should be e a s i l y i d e n t i f i e d from th avenue. . . . constraints: heavy vehicular traffic the s u b j e c t s i t e i s bounded by a major a r t e r i a l route th avenue with very heavy t r a f f i c and l o c a l d i s t r i b u t o r s highbury tjojttinrinrtai p mould ddtjxnpong . qligoltjq <l i i : . ! • irpi ; lq_ i'll i illmllu | j|tint i i i i i i i i i ' i i i i i i i i i ! ' i i— i i- j _ ' _ ! _ l _ l . i l l l u o k f i g . - p u b l i c t r a n s p o r t a t i o n and v e h i c u l a r access ''ttejoopa d=- • i: i m f h , ; i n ' . ! » w t ; ! » i i i i i i i i i » i i i i ' i i i ! i i : i i ~ l ' i i i " i i ' i i i t l h ^ j ^ j j p in rnodonrcxn f i g . - p e d e s t r i a n access s t r e e t and th avenue. the c i t y e n g i n e e r i n g department does not have r e c e n t t r a f f i c data on th avenue; however, the a v a i l a b l e and data i n d i c a t e d t h a t the v e h i c u l a r t r a f f i c has a g r e a t impact on the q u a l i t y of l i f e i n the development along th avenue. in the rush hours, f o r example, between p.m. and p.m. outbound volumes away from the c i t y c e n t r e comprised v e h i c l e s and i n the morning between a.m. and a.m. inbound volumes towards the c i t y centre comprised v e h i c l e s . other i n f o r m a t i o n from automatic t r a f f i c counts: - ( s e a s o n a l l y & d a i l y a d j u s t e d data) p r o v i d e s even more dramatic data. for example, i n rush hours between - a.m. outbound volumes away from the c i t y centre towards ubc amounted to a maximum of v e h i c l e s , while i n rush hours between - p.m o n l y maximum v e h i c l e s . on the other hand, the inbound volumes towards the c i t y c e n t r e between - a.m. amounted to a maximum of v e h i c l e s , while i n rush hours between - p.m. i t amounted to maximum of v e h i c l e s . these data i n d i c a t e tremendous t r a f f i c flow i n the d i r e c t i o n of ubc campus. other data from the c i t y ' s e n g i n e e r i n g department i n d i c a t e a s e r i o u s problem with the number of l e f t turns made from alma s t r e e t to west th avenue. t h i s i n t e r s e c t i o n i s extremely congested ( e s p e c i a l l y i n summer time), because of i t s access to the beach as w e l l as to the ubc. the problem with l e f t t u r n can a l s o appear on the i n t e r s e c t i o n of th avenue and highbury s t r e e t . in order to reduce the heavy t r a f f i c on th avenue and provide easy access to the s i t e the c i t y has recommended an access to the s u b j e c t s i t e from highbury s t r e e t through s i x t h avenue. moreover, i n g r e s s and egress to the p a r k i n g area must balance the impact on a r t e r i a l volumes and a b u t t i n g r e s i d e n t i a l p r o p e r t i e s . a l l e x i s t i n g p a r k i n g i n the neighbourhood occurs e i t h e r on the s t r e e t s , i n the f r o n t yards, or garages l o c a t e d on the s i d e , or r e a r yards. when c o n s i d e r i n g s e n i o r s o r i e n t e d housing, the i s s u e of p a r k i n g o f t e n a r i s e s . . . conclusion easy access to p u b l i c t r a n s p o r t a t i o n w i l l allow the ccc r e s i - dents to continue to take an a c t i v e p a r t i n the community. s t a f f and s e n i o r s l i v i n g i n the community, but a t t e n d i n g o n - s i t e program may be u s i n g p u b l i c t r a n s p o r a t i o n , t h e r e f o r e an easy access to t h i s s e r v i c e w i l l be an a s s e t . i t i s l i k e l y t h a t v i s i t o r s to the e l d e r l y r e s i d e n t s w i l l r e l y on p u b l i c t r a n s p o r t a - t i o n as w e l l . v e h i c u l a r access - each major component of the ccc w i l l have i t s own e x t e r n a l access. in order to reduce the heavy t r a f f i c on th avenue and a v o i d congestion of t r a f f i c on the i n t e r s e c - t i o n of th avenue and highbury ( l e f t t u r n ) , the main v e h i c u l a r access to the s i t e should be provided from highbury s t r e e t through s i x avenue a c c o r d i n g to recommendation of the c i t y e n g i n e e r i n g department. t h i s access should be provided as a s e r v i c e access to the core centre f a c i l i t i e s i n c o n j u n c t i o n with p a r k i n g f o r v i s i t o r s . p a r k i n g should be s i t u a t e d c l o s e to the main entrance to pre- clude v i s i t o r s from e n t e r i n g the f a c i l i t y through unauthorized r o u t e s . space p r o v i s i o n should be provided f o r the f u t u r e expansion of the parking area. the ccc development should employ a l s o e x i s t i n g v e h i c u l a r access from th avenue to the independent housing r e s i d e n t i a l c l u s t e r s . the e x i s t i n g access from th avenue should remain as an access to the long term care f a c i l i t i e s keeping i n mind the e a s i e s t c o n n e c t i o n with the h o s p i t a l and the ubc campus. evaluation # : s i t e p h y s i c a l c h a r a c t e r i s t i c . . . . opportunities: site natural resources a. topography (see f i g . - ) the s i t e s l o p e s from the southwest to the n o r t h e a s t . there i s approximately a f o o t change i n e l e v a t i o n across the sub- j e c t s i t e . the e l e v a t i o n r i s e s from f e e t to f e e t . how- ever, the s t e e p e s t p a r t of the s i t e i s l o c a t e d i n the southwest, where there i s almost an % slope. the n o r t h e a s t p a r t of the s i t e i s almost f l a t where the e l e v a t i o n r i s e s approximately ' and the slope doesn't exceed %. b. v e g e t a t i o n and landscaping: (see f i g . - ) the s u b j e c t s i t e i s a v a s t , green area i n p o i n t grey. in the western p a r t of the s i t e , there i s a s u b s t a n t i a l q u a n t i t y of deciduous t r e e s , which provide a n a t u r a l b u f f e r zone from the adjacent j e r i c h o h i l l school and j u s t i c e i n s t i t u t e . along th avenue, there i s an e x i s t i n g green b u f f e r with deciduous t r e e s t h a t p r o v i d e s a b a r r i e r from the n o i s y th avenue. close to the i n t e r s e c t i o n of th avenue and highbury s t r e e t , there i s a beau •b*ach park i west part • i i i i i i i i i • l. douliulidp i > i i i i i i i ! ! i • q d d ' d d • d o ' o d d ' e u i a u c o o * / v o ' o b b b b b i ' i i i i th a v e . m » • i i i i « i ! j c b g d o d o c o d d o o d j d d u d o r-r-. • ! i i i . i i [^•^•.••ocjdpod i i t i i i i •jltodci h ^ o c f a b d q g ^ ' i [i—innr. m v . i t r o u u n t av •b|dlp|p|d|ab|irj| j c ic ht m avi i • c eeeeb . ttj • t w o * tnrn* trvn* , t f » t » ^ » : u ^ r . i t u - u _ i i . . ' j - m . i j . u _ ' i.u j i l l i i i i h i l.-i. i i l i i : i u.jt'l ' l f i g . - s i t e topography http://mv.it http://'j-m.ij.u_' v a. & n ^ beach park u sp a o p p a p a ^ era. o| [opoauiaoq lumrmrmai pcodii ' i ' l l »*t ( k l / o i i t i c c m c * v t •cddddod! s imô csoct : fctcraqpa: o d d o d d d d d d d o d [ * • d d d o p r j d f • • • • • • u u l th ave ' schcj i m o o j r j d q d ^ jggrjjrjl^u! s dctjqoc , i i i i i . f t l , . . . ldxddtlrcdoq ttttt " ( i i i i i i i : i mm hi n l i i ' t i lllll l l-l i r a ' o i a o c n ! mt ^ t t t l i n ii. ,!hi !! x o d d d : ~ ^ j p c o in mrtrrml f i g . - v e g e t a t i o n and landscaping t i f u l a l l e y with many f e a t u r e t r e e s t h a t c r o s s the s i t e d i a g o n a l - l y on the east-west a x i s . the new ccc development has a p o t e n t i a l to emphasize n a t u r a l beauty of the s i t e through l a n d s c a p i n g t h a t c r e a t e s v i s u a l i n t e r e s t and i d e n t i t y . t h i s can be achieved by: . r e i n f o r c i n g and i n t e g r a t i n g with the p a t t e r n and c h a r a c t e r of the e x i s t i n g l a n d s c a p i n g . . provide l a n d s c a p i n g with a v a r i e t y of f l o w e r i n g shrubs, p e r e n n i a l s and t r e e s ; to be a t t r a c t i v e i n a l l f o u r seasons of the year. . r e t a i n i n g e x i s t i n g mature t r e e s e s p e c i a l l y i n the a l l e y a t the i n t e r s e c t i o n of th avenue and highbury s t r e e t . . i n c o r p o r a t i n g s p e c i a l open space f e a t u r e s such as ponds, f o u n t a i n s , arches, arbours to c r e a t e v i s u a l i n t e r e s t along the s t r e e t edge. . i n c o r p o r a t i n g l i g h t i n g i n t o l a n d s c a p i n g to c r e a t e an a t t r a c t i v e n i g h t - t i m e appearance and i l l u m i n a t i n g a l l major walkways to allow safe use a t n i g h t . c. "green o a s i s " i n the p o i n t grey area the f e d e r a l n a t i o n a l defence lands s i t e as can be seen now i s a l a r g e green open space i n the community. the proposed ccc f a c i l i - t y w i l l transform the land i n t o a medium d e n s i t y development but with an abundance of open spaces a c c e s s i b l e to a l l : r e s i d e n t s of the f a c i l i t y , the neighbourhood as a whole and the general p u b l i c . the proposed open spaces s h a l l c o n t r i b u t e to the neigh- bourhood i d e n t i t y by: . c r e a t i n g l a r g e continous open space r a t h e r than a s e r i e s of s m a l l e r i s o l a t e d spaces. . l i n k i n g the open spaces with j e r i c h o park. . c r e a t i n g a gradual t r a n s i t i o n from the p u b l i c realm of the s t r e e t to the p r i v a t e realm of the i n d i v i d u a l u n i t . . p r o v i d i n g common (shared by r e s i d e n t s ) open space i n the form of c o u r t yards. . m i n i m i z i n g the use of high, s o l i d fences along the s t r e e t edge. p r i v a c y f e n c i n g or l a n d s c a p i n g s c r e e n i n g should allow c o n t i n u i t y of open spaces between c l u s t e r s . . p r i v a t e open spaces s h a l l be d i r e c t l y a c c e s s i b l e from each u n i t i n the form of a p a t i o or balcony. ground l e v e l p r i v a t e open space s h a l l be d e f i n e d by s c r e e n i n g or l a n d s c a p i n g . . on the sloped p a r t of the s i t e along th avenue open space should be t e r r a c e d to complement e x i s t i n g topography and landscape. . . constraints the south-west p o r t i o n of the s i t e along th avenue shows a very steep slope approx. %, which a f f e c t s any r e s i d e n t i a l , b a r r i e r - f r e e design f o r the e l d e r l y . the ccc development should concentrate i n the north e a s t e r n p o r t i o n of the s i t e to f a c i l i - t a t e r e s i d e n t s walking without hazards. . . conclusion the s i t e p r o v i d e s an o p p o r t u n i t y to c r e a t e a l a r g e c o n t i n uous open space, which can be l i n k e d with j e r i c h o park. t h i s c e n t r a l open space should be designed f o r the country club f a c i l i t i e s and park. the e x i s t i n g t r e e s , e s p e c i a l l y i n the a l l e y , important f e a t u r e of the s i t e , should be preserved i n the f u t u r e development to c r e a t e v i s u a l i n t e r e s t and enhance q u a l i t y of the ccc p r i v a t e and common open space. evaluation # : space character and views . . opportunities a. massing s c a l e and housing character in keeping with the recommendations of the c i t y planning department, the ccc should be a l o w - r i s e development compatible with the surrounding neighbourhoods (rs-on the south; rm-on the e a s t and n o r t h ) . south of th avenue and west of highbury i s the edge of the west p o i n t grey s i n g l e f a m i l y neighbourhood. to the east of highbury s t r e e t , there i s a m u l t i - f a m i l y housing zoned rm- a , which i n c l u d e s a new development of condominiums f o r o l d e r a d u l t s . on the corner of th avenue and highbury s t r e e t , there i s an -storey r e s i d e n t i a l b u i l d i n g under c o n s t r u c t i o n ( a d u l t o r i e n t e d ) . to the n o r t h , there i s m u l t i - f a m i l y housing zoned rm- a, which comprises a l s o the r e n t a l housing f o r the e l d e r l y : b. p u b l i c and p r i v a t e views; (see f i g . - ) there are o n l y l i m i t e d p u b l i c and p r i v a t e views i n the area due to the topography and e x i s t i n g t r e e s on the s i t e . the p r i v a t e view on the s u b j e c t s i t e i s only a v a i l a b l e i n the piqirimj.di pcorfuu rr*v —n „ ————— c=plt: i d ! - t t t t t .pnxiai • , _ . ! scna i ! • publlicr v i •xrvlrj i i - • . , — , oqxp= i i i ' m ' i i i i . . . , d a d t ± t t e d q d c n l . i : : : e b y • t t t . o o c r d c "nxij * ! ' i roan ~i i l i i i i i i ' i t n — i ( ! i i i' n i i m t-,, • • j j p j i in r r o c t r r c a l f i g . - p u b l i c and p r i v a t e views the southern p a r t of the s i t e (the h i g h e s t p o i n t ) and i n the northwest p a r t of the s i t e where i s a view of the mountains and j e r i c h o park. the major p u b l i c view c o r r i d o r e x i s t s along highbury s t r e e t , l o o k i n g n o r t h . the ccc development should ensure t h a t these views are preserved. t h i s can be achieved by: . s i t i n g the b u i l d i n g mass away from the p o t e n t i a l view c o r r i d o r s . . l i m i t i n g b u i l d i n g mass where i t blocks s i g n i f i c a n t views from adjacent b u i l d i n g s - e s p e c i a l l y i n the south p a r t of the s i t e . . l i n k i n g open spaces to extend the new depth. . l o c a t i n g landscaped open spaces c l o s e to windows i n u n i t s with l i m i t e d o p p o r t u n i t i e s f o r d i s t a n c e views. . . constraints: compatibility with neighbourhood the e x i s t i n g apartment b u i l d i n g s along th avenue and highbury s t r e e t are s t o r e y b u i l d i n g s , which have no s p e c i a l a r c h i t e c t u r a l merit. along th avenue, there are one or two s t o r e y o l d e r houses b u i l t as s i n g l e f a m i l y homes. . . conclusion in keeping with the community o b j e c t i v e (chapter ), n.d.o. # , the new development on the s u b j e c t s i t e should achieve v i s u a l c o m p a t i b i l i t y with the surrounding housing. in terms of o v e r a l l massing, a new development should provide massing o p t i o n s from s i n g l e f a m i l y homes to m u l t i p l e - u n i t housing. the f o l l o w i n g g u i d e l i n e s are recommended: . s i n g l e f a m i l y housing forms i n the area adjacent to one f a m i l y detached houses, - s t o r e y high. . apartment b u i l d i n g forms along highbury s t r e e t compatible with the new apartment b u i l d i n g s now under c o n s t r u c t i o n . while some f l a t r o o f s a l r e a d y e x i s t i n the apartment b u i l d - i n g s , the new b u i l d i n g s should r e i n f o r c e the " h o u s e - l i k e " c h a r a c t e r by p r o v i d i n g p i t c h e d r o o f s , dormers, chimneys and porches. . emphasizing the c o n t i n u i t y of the commercial c h a r a c t e r of alma s t r e e t and the th avenue corner. the h e i g h t s should vary from s t o r e y b u i l d i n g s along highbury s t r e e t and th avenue to - s t o r e y b u i l d i n g s along th avenue. the ccc independent l i v i n g r e n t a l (bchmc) housing apartment b u i l d i n g , s t o r e y height should be l o c a t e d along highbury s t r e e t . one s t o r y h e i g h t co-op and s t r a t a t i t l e townhouses should be l o c a t e d along th avenue. in keeping with the o b j e c t i v e n.d.o. # , the core centre should be l o c a t e d on th avenue c l o s e to highbury s t r e e t i n order to maintain a more urban s t r e e t s c a p e c h a r a c t e r i n the north east p a r t of the s i t e . c o n s i d e r a t i o n should be given to the views from the new development. in keeping with o b j e c t i v e n.d.o. # , the ccc development should p l a c e r e s i d e n t i a l long term care c l u s t e r i n the north-west p a r t of the s i t e to take advantage of a wonderful view of the north shore mountains and j e r i c h o beach. in the southern p a r t of the s i t e the independent l i v i n g c l u s t e r s should permit b u i l d i n g mass to preserve the p r i v a t e view. evaluation # : housing p a t t e r n s (see f i g . - , - , - , - ) . . rationale: p a t t e r n s of housing w i t h i n the continuum of care complex may be based on e i t h e r s e p a r a t i o n of the o n - s i t e f a c i l i t i e s f o r r e s i d e n t s with d i f f e r e n t a b i l i t y l e v e l or i n t e g r a t i o n of such f a c i l i t i e s . both s o l u t i o n s have advantages and disadvantages. a c c o r d i n g to carstens ( ) s e v e r a l p o i n t s can be noted i n f a v o r of the s e p a r a t i o n p a t t e r n : . people tend n a t u r a l l y to group themselves. more able r e s i - dents p r e f e r not to mingle with the l e s s competent. . i n t e g r a t i o n of care f a c i l i t i e s with more independent l i v i n g may promote an " i n s t i t u t i o n a l " image r a t h e r than " r e s i d e n - t i a l " . . the s o c i a l c o s t of s e p a r a t i o n may be reduced by management p o l i c i e s t h a t encourage v o l u n t e e r i n t e r a c t i o n . in f a v o r of i n t e g r a t i o n p a t t e r n there are some s u p p o r t i v e f a c t o r s : . a f i n a n c i a l r a t i o n a l e f a v o r s shared s e r v i c e s and f a c i l i t i e s . . i n t e g r a t i o n promotes s h a r i n g , mutual a s s i s t a n c e , s e l f - h e l p and a l s o p r o v i d e s a powerful o p p o r t u n i t y f o r s o c i a l l e a r n i n g . . segregate f a c i l i t i e s o f t e n r e q u i r e the eventual movement of r e s i d e n t s and the s e p a r a t i o n of spouses and f r i e n d s . such a move can have a very negative e f f e c t upon the r e s i d e n t s ' h e a l t h . t h e r e f o r e , the d e c i s i o n to c r e a t e a separate or i n t e g r a t e d care f a c i l i t y must be c a r e f u l l y weighed. p a t t e r n o p t i o n s f o r housing arrangements (based on carstens ) i n c l u d e the f o l l o w i n g : p a t t e r n no. : s e p a r a t i n g l i v i n g zones f o r independent, i n t e r m e d i a t e and dependent l i v i n g - n u r s i n g care (see f i g . - ). p a t t e r n no. : c l u s t e r i n g i n t e r m e d i a t e and extended care f a c i l i t i e s and a l s o support s e r v i c e s together while p r o v i d i n g a separate zone f o r independent l i v i n g r e s i d e n t s (see f i g . - ). p a t t e r n no. : shared meeting and common spaces, but separate r e s i d e n t i a l areas and f a c i l i t i e s s u i t a b l e f o r each l e v e l of care (see f i g . - ). p a t t e r n no. : a r a d i a l arrangement with common f a c i l i t i e s and s o c i a l areas as the c e n t r a l core element. s e r v i c e s and f a c i l i t i e s common to v a r i o u s l e v e l s of care c r e a t e separate housing zones (see f i g . - ). . . pattern no. : objectives: . separate i d e n t i t i e s and independent f u n c t i o n i n g f o r each l e v e l of care. . complete s e p a r a t i o n of the extended care f a c i l i t y and i t s j u x t a p o s i t i o n to independent housing attempts to reduce p s y c h o l o g i c a l a s s o c i a t i o n s of p h y s i c a l p r o x i m i t y to more i n t e n s i v e care f a c i l i t i e s a s s o c i a t e d with a p e r s o n a l nearness to death and dying. f i g . - p a t t e r n no. e x i s t i n g s i t e at the motion p i c t u r e and t e l e v i s i o n i n d u s t r y fund country house and h o s p i t a l , c a l i f o r n i a . carstens, d. s i t e planning and design f o r the e l d e r l y - issues, g u i d e l i n e s and a l t e r n a t i v e s . , p~. ~! example - source: f i g . - p a t t e r n no. maple k n o l l v i l l a g e , ohio. the gruzen p a r t n e r s h i p a r c h i t e c t s and planners, new york. carstens, d. s i t e planning and design f o r the e l d e r l y - issues, g u i d e l i n e s and a l t e r n a t i v e s . , pt &~. example - source: f i g . - p a t t e r n no. example - prototype of the e l d e r l y housing. oskar newman a r c h i t e c t / p l a n n e r , new york. source: rush, r. the age of the aging. p r o g r e s s i v e a r c h i t e c t u r e . , no. , p. . f i g . - p a t t e r n no. example - regents p o i n t . neptun and thomas a s s o c i a t e s a r c h i t e c t s , pasadena, c a l i f o r n i a . source: carstens, d. s i t e planning and design f o r e l d e r l y - issues, g u i d e l i n e s and a l t e r n a t i v e s . , p. . . shared a c t i v i t y space (the core centre) a f f o r d s some i n t e r a c t i o n between i n t e r m e d i a t e and independent l i v i n g . t h i s p a t t e r n was employed i n the proposed master p l a n f o r the motion p i c t u r e and t e l e v i s i o n fund country house and h o s p i t a l , los angeles i n c a l i f o r n i a (see chapter ). . . pattern no. : objectives . promote the image of independent l i v i n g i n a separate complex of the independent r e s i d e n t i a l c l u s t e r . . provide o p p o r t u n i t i e s f o r i n t e r a c t i o n f o r the intermediate and extended care r e s i d e n t s with independent l i v i n g r e s i d e n t s i n common shared space (the core c e n t r e ) . . separate the extended care from the intermediate care by shared space - the core centre to reduce p s y c h o l o g i c a l a s s o c i a t i o n with nearness to death and dying i n the extended care f a c i l i t y . t h i s p a t t e r n was employed i n maple k n o l l v i l l a g e , ohio (carstens , p. ) and i n st. michael's centre, burnaby, b.c. as an a l t e r n a t i v e arrangement the independent l i v i n g and intermediate care can be c l u s t e r e d together with the common shared spaces i n the core centre, while extended care c l u s t e r may remain as a separate e n t i t y . for example, independent l i v i n g housing and intermediate care f a c i l i t y are c l u s t e r e d i n h o l l y b u r n house i n north vancouver b.c. and south g r a n v i l l e park lounge, vancouver, b.c. (see chapter ). . . pattern no. : objectives . i n t e g r a t e a l l l e v e l s of care and shared common space - the core centre - i n one b u i l d i n g together to promote d i r e c t access to s e r v i c e s and a sense of s e c u r i t y among r e s i d e n t s . . promote a sense of s a f e t y and s e c u r i t y f o r more f r a i l r e s i d e n t s by l o c a t i n g independent l i v i n g c l o s e to dependent l i v i n g . . reduce s t r e s s of r e l o c a t i o n to separate zone on the s i t e when one's h e a l t h d e t e r i o r a t e s . within the same b u i l d i n g s e r v i c e s can move e a s i l y to the r e s i d e n t s and while they can s t a y i n t h e i r d w e l l i n g u n i t s . . reduce s t r e s s of the s e p a r a t i o n of spouse and f r i e n d s i f movement would be necessary. t h i s p a t t e r n was employed i n seton v i l l a i n burnaby, b.c. ( m u l t i - l e v e l f a c i l i t y ) ( s e e chapter ). d i f f e r e n t f l o o r s of t h i s h i g h r i s e d i f f e r e n t i a t e l e v e l of care (seven top f l o o r s - indepen- dent l i v i n g , next s i x f l o o r s - board r e s i d e n t s , the bottom f o u r f l o o r s accommodate pc-ic r e s i d e n t s ) . . . pattern no. : objectives . maximize access to the common f a c i l i t y from each l e v e l of care i n r e s i d e n t i a l areas. . create a separate e n t i t y of each l e v e l of care i n separate r e s i d e n t i a l c l u s t e r s to promote "mini community f e e l i n g " . t h i s p a t t e r n was p a r t i a l l y employed i n the regents p o i n t continuum of care environment community (see chapter ). i t can provide an a l t e r n a t i v e arrangement by lengthening f o r example j u x t a p o s i t i o n of the extended care f a c i l i t y i n order to reduce p h y s i c a l p r o x i m i t y to more i n t e n s i v e care as w e l l as by prolong- i n g a d i s t a n c e form independent l i v i n g u n i t s to promote image of independent l i v i n g . . . conclusion housing p a t t e r n s have been presented i n e v a l u a t i o n # f o r the purpose of a general overview and comparison. i f i t was a r e a l - l i f e s i t u a t i o n , i t would be the moment when the major d e c i s i o n s r e g a r d i n g p r o j e c t development would have to be made. t h i s would be a t r a n s i t i o n a l phase from the f a c i l i t y program to the f e a s i b i l i t y study u s u a l l y undertaken by the b u i l d i n g committee ( i n case of n o n - p r o f i t s o c i e t y ) or the developer ( i n case of market housing) and then the a r c h i t e c t would be s t a r t i n g o f f with the schematic design and design development. another i s s u e , which would have to be r e s o l v e d at t h a t time, i s the a c t u a l c i t y of vancouver zoning, probably cd-comprehensive development d i s t r i c t , u s u a l l y developed and approved a f t e r a long process of the c i t y planners involvement and p u b l i c hear- ings h e l d i n the s u b j e c t neighbourhood. for the purpose of t h i s t h e s i s , i would l i k e to present my own p e r s o n a l p o i n t of view on how the housing p a t t e r n s should be evaluated, which p a t t e r n i would p r e f e r myself and a l s o how i see the next step i n terms of a design a r c h i t e c t involvement three i s s u e s : issue # - steps f o r housing p a t t e r n s e v a l u a t i o n . issue # - housing p a t t e r n s e l e c t i o n , my own c h o i c e . issue # - next steps to be taken by the design a r c h i t e c t . issue # : steps f o r housing p a t t e r n s e v a l u a t i o n . p a t t e r n s e l e c t i o n would be the most important d e c i s i o n i n the e n t i r e f u t u r e p r o j e c t development. i t i s my understanding t h a t the e v a l u a t i o n process would have to be based on c l e a r l y s t r u c t u r e d methodology, aimed at the e v a l u a t i n g team r e p r e s e n t - i n g a l l i n v o l v e d i n the s u b j e c t p r o j e c t : users of the f a c i l i t y ( r e s i d e n t s , s t a f f , management); f i n a n c i n g i n s t i t u t i o n s ; develop- e r s ; c i t y planners; governmental agencies (long-term care) and a l s o l o c a l community leaders. e v a l u a t i o n should be based on r a t i n g so the f i n a l c o n c l u s i o n c o u l d be e a s i l y a r r i v e d a t . the development of c i t e r i a to be used i n the e v a l u a t i o n process, has to be based on chapter of t h i s t h e s i s - the ccc f a c i l t y o b j e c t i v e s ( f i v e groups). i t i s not the i n t e n t i o n of t h i s t h e s i s to develop d e t a i l e d e v a l u a t i o n c i r t e r i a of housing p a t t e r n s but o n l y to i n d i c a t e the process, which may be used by the e v a l u a t i n g team. one of the most important c i t e r i o n i n the e v a l u a t i o n of ccc f a c i l i t y housing p a t t e r n s i s the q u a l i t y environment. i would recommend the f o l l o w i n g e v a l u a t i o n steps which would appraise the f o l l o w i n g c r i t i c a l i s s u e s : step # : a q u a l i t y environment i n terms o f : . increased o p p o r t u n i t i e s f o r i n d i v i d u a l choice i n the ccc p h y s i c a l s e t t i n g . . improved comprehension and o r i e n t a t i o n i n the new environment - wayfinding has been promoted. . encouraged s o c i a l i n t e r a c t i o n . . provided o p p o r t u n i t i e s f o r i n d i v i d u a l p r i v a c y . step # : s a f e t y and s e c u r i t y . l e v e l to which outdoor common areas used by r e s i d e n t s have been enclosed w i t h i n c l u s t e r s . . how s u c c e s s f u l a c l e a r t r a n s i t i o n from neighbourhood p u b l i c space to p r i v a t e space has been achieved. . how e f f e c t i v e i s the s i t e p l a n n i n g i n terms of c l e a r l y d e f i n e d edge c o n d i t i o n s such as fences. step # : a v a r i e t y of environments a combination of d i f f e r e n t environments f o r the e l d e r l y should i n c l u d e : . a 'home-like' environment i n the d w e l l i n g c l u s t e r s at a l l l e v e l s of care. . a ' s o c i a l community* environment i n the amenity areas and outdoor a c t i v i t y c e n t r e . step # : s o c i a l needs the p o t e n t i a l of a p a t t e r n to c r e a t e a s t r o n g community f e e l i n g by p r o v i d i n g a p h y s i c a l environment which w i l l f a c i l i t a t e s o c i a l i n t e r a c t i o n . issue # : housing p a t t e r n s e l e c t i o n - my own c h o i c e . i t i s my p e r s o n a l b e l i e f , t h a t p a t t e r n # r e p r e s e n t i n g s e p a r a t i o n of the independent l i v i n g q u a r t e r s and i n t e g r a t i o n of the intermediate and extended care q u a r t e r s , should be implement- ed i n the proposed continuum of care complex i n p o i n t grey. in making my own e v a l u a t i o n (note: t h i s i s o n l y a r c h i t e c t ' s p o i n t of view) i used the f o l l o w i n g c r i t e r i a ( c = c r i t e r i o n ) l i s t - ed below as the c r i t i c a l i s s u e s : c#l t h i s p a t t e r n has the g r e a t e s t p o t e n t i a l to c r e a t e a q u a l i t y environment by: . i n c r e a s i n g o p p o r t u n i t i e s f o r i n d i v i d u a l choice i n the ccc p h y s i c a l s e t t i n g . for example, a separate independent l i v i n g zone would provide o p p o r t u n i t i e s to c r e a t e a choice i n l i v i n g arrangements such as townhouses or m u l t i p l e d w e l l i n g u n i t s . the c l u s t e r e d interme- d i a t e and extended care f a c i l i t y with the core centre would i n c r e a s e a l s o o p p o r t u n i t i e s f o r i n d i v i d u a l c h o i c e . i t s r e s i d e n t s would change very e a s i l y (a r e l a t i v e l y s h o r t d i s t a n c e to the core centre) t h e i r "home-like" environment f o r a " s o c i a l community" environment. . improving comprehension and o r i e n t a t i o n (to promote w a y f i n d i n g ) . the separate independent l i v i n g zone would allow to imple- ment a c l u s t e r p a t t e r n which promotes a wayfinding. s i m i l a r l y , the c l u s t e r e d long-term care f a c i l i t i e s with the core centre may s i g n i f i c a n t l y improve comrehension and o r i e n t a t i o n i n the environment. a d i r e c t connection with the core centre would f a c i l i t a t e a wayfinding not o n l y f o r long-term care f a c i l i t y r e s i d e n t s , but a l s o f o r independent l i v i n g r e s i d e n t s , as t h i s p a t t e r n may c l e a r l y absorb a 'feeder system'-the ccc c i r c u l a t i o n network. . encouraging s o c i a l i n t e r a c t i o n between r e s i d e n t s and v i s i t o r s . t h i s housing o p t i o n , by p r o v i d i n g p o s s i b l i t y f o r r e s i d e n t i a l c l u s t e r p a t t e r n , would promote s o c i a l i n t e r a c t i o n between r e s i d e n t s . i t would a l s o c r e a t e an o p p o r t u n i t y f o r d e s i g n i n g outdoor common areas i n c l o s e p r o x i m i t y to the r e s i d e n t i a l zones and consequently provide f u r t h e r o p p o r t u n i t i e s f o r s o c i a l i n t e r a c t i o n . . p r o v i d i n g o p p o r t u n i t i e s f o r i n d i v i d u a l p r i v a c y : the c l u s t e r p a t t e r n would provide o p p o r u n i t i e s f o r i n d i v i d u - a l p r i v a c y e.g. p r i v a t e outdoor spaces. . p r o v i d i n g s a f e t y and s e c u r i t y . the outdoor common areas used by r e s i d e n t s would be enclosed w i t h i n safe r e s i d e n t i a l c l u s t e r s . the main p e d e s t r i a n walkways c o u l d be e a s i l y l a i d out to allow f o r v i s u a l s u r v e i l l a n c e by r e s i d e n t s and s t a f f (feeder system). c# t h i s p a t t e r n would e a s i l y achieve one of the major t h e s i s o b j e c t i v e s to c r e a t e a s t r o n g community f e e l i n g . . the s i t e p l a n implementing t h i s housing p a t t e r n would f o s t e r community f e e l i n g . the p r o x i m i t y to the core centre from long-term care r e s i d e n t i a l c l u s t e r s , may provide o l d e r people with the f e e l i n g of belonging to the ccc community. . the c l u s t e r e d r e s i d e n t i a l components may be e a s i l y designed to f a c i l i t a t e s o c i a l i n t e r a c t i o n and a l s o to d i m i n i s h the stereotype of " o l d - f o l k s home" i n s t i t u t i o n a l c h a r a c t e r . . the core centre with the main concourse component, c o u l d be designed as a very a t t r a c t i v e a r c h i t e c t u r a l environment. a p l a c e which may be a p p e a l i n g f o r many r e s i d e n t s from the p o i n t grey community. c# t h i s p a t t e r n may e a s i l y c e n t r a l i z e a l l s u p p o r t i v e s e r v i c e s , but a t the same time, maintain home-like environment i n the e n t i r e ccc f a c i l i t y . . by c l u s t e r i n g the long-term care f a c i l i t i e s , and the core centre, a r e d u c t i o n i n s u p p o r t i v e s e r v i c e s , s t a f f , and s e r v i c e s may be expected. t h i s i n t u r n , would l e a d to the o p e r a t i n g c o s t r e d u c t i o n of the e n t i r e ccc f a c i l i t y . . t h i s p a t t e r n would allow f o r easy access f o r the long-term care r e s i d e n t s , as w e l l as s t a f f , to a l l c e n t r a l i z e d s e r v i c e s i n the core centre. c# neighbourhood development o b j e c t i v e s as d i s c u s s e d i n chapter , of t h i s t h e s i s , c o u l d be achieved i n the most s a t i s f a c t o r y manner. . p a t t e r n # would allow to maintain l i v a b i l i t y , p r i v a c y and a sense of community. the independent l i v i n g r e s i d e n t i a l c l u s t e r s , as w e l l as the long-term care f a c i l i t i e s , would provide high l e v e l s of l i v a b i l i t y . the long-term care f a c i l i t i e s , combined with the core centre, would r e i n f o r c e a sense of community. . t h i s p a t t e r n would e a s i l y allow f o r c r e a t i o n of a cohesive neighbourhood c h a r a c t e r and achieve v i s u a l c o m p a t i b i l i t y with the surrounding housing. the independent l i v i n g zone, with one s t o r e y townhouses may be l o c a t e d along th avenue to comply with s i n g l e - f a m i l y homes, while bcmhc r e n t a l housing may be l o c a t e d along highbury s t r e e t , where m u l t i p l e - u n i t housing i s dominat. the c l u s t e r e d long-term care f a c i l i t y , with the core centre, would provide v i s u a l c o m p a t a b i l i t y with e x i s t i n g housing l o c a t e d along th avenue. . t h i s p a t t e r n would c o n t r i b u t e b e t t e r to s t r e e t s c a p e c h a r a c t e r than o t h e r s . the core centre which may be l o c a t e d at the corner of th avenue and highbury s t r e e t , would c r e a t e an e x t e n s i o n of an e x i s t i n g commercial shopping and s e r v i c e development, while long-term care f a c i l i t i e s may c r e a t e r e s i d e n t i a l c h a r a c t e r f u r t h e r to the west, along th avenue or on highbury s t r e e t . the independent l i v i n g would very e a s i l y provide b u i l d i n g treatment t h a t complements development on adjacent s i t e s and would c r e a t e v i s u a l rhythm. . t h i s housing p a t t e r n would take the b i g g e s t advantage of the e x i s t i n g views. for example, the independent l i v i n g c l u s t e r s l o c a t e d on the southern p a r t of the s i t e would have a p r i v a t e view of the mountains and downtown while long-term care f a c i l i t y , as w e l l as outdoor common spaces, l o c a t e d i n the northern p a r t of the s i t e may have a view of the mountains and j e r i c h o beach park. . t h i s housing p a t t e r n would allow f o r development of the p r o j e c t i n stages, as w e l l as, would allow f o r an easy f u t u r e e x t e n s i o n . in a d d i t i o n , t h i s p a t t e r n would allow f o r space f l e x i b i l i t y w i t h i n long-term care c l u s t e r s and the core centre. issue # : next steps to be taken by the design a r c h i t e c t . the f a c i l i t y program developed i n t h i s t h e s i s has been presented as a h y p o t h e t i c a l model of a programming system. although t h i s model has been developed i n the r e a l s i t u a t i o n of the p o i n t grey community, on a s e l e c t e d s i t e , n e v e r t h e l e s s , i t s purpose i s t h e o r e t i c a l . the major p a r t i n any development process - the c l i e n t / s p o n s o r i s missing. t h e r e f o r e , i n order to suggest any steps to be taken by the design a r c h i t e c t , a number of assumptions have to be made. these assumptions are necessary, because i t ' s not the a r c h i t e c t , but the c l i e n t , who makes the p r o j e c t r e a l i t y . assumptions: . the c l i e n t ' s o r g a n i z a t i o n e.g.: "the ccc of p o i n t grey s o c i e t y " has been e s t a b l i s h e d , by c o n s i s t i n g of the board of d i r e c t o r s , b u i l d i n g committee, and c l i e n t s ' r e p r e s e n t a t i v e . the c l i e n t has arranged f o r the f i n a n c i n g of the e n t i r e p r o j e c t which i n c l u d e s purchase of p r o p e r t y and arrangement f o r f i n a n c e s . the c l i e n t has obtained the housing p a t t e r n s e v a l u a t i n g team, made-up of d i v e r s e users and p r o f e s s i o n a l s (see issue # ) . the c l i e n t has arranged f o r the f e a s i b i l i t y study with the major o b j e c t i v e s : to determine and confirm the a c t u a l demand (at the time of a p r o j e c t c o n s t r u c t i o n and u n t i l the year ) and need f o r the s p e c i f i c range of f a c i l i t i e s and s e r v i c e s s t i p u l a t e d i n the ccc f a c i l i t y program. to i d e n t i f y c l e a r l y the t a r g e t p o p u l a t i o n , l e v e l of s e r v i c e s and b u i l d i n g forms f o r each type of e l d e r l y group. to analyze o p t i o n s of a p r o j e c t d e l i v e r y methods (phased c o n s t r u c t i o n ; p r o j e c t or c o n s t r u c t i o n management and b u i l d i n g forms). to analyze the a c t u a l (at the time of a p r o j e c t c o n s t r u c t i o n ) socio-economic and h e a l t h care c h a r a c t e r i s t i c s of e l d e r l y p o p u l a t i o n and t h e i r preferences/needs r e g a r d i n g combination of tenure, b u i l d i n g forms and on s i t e s e r v i c e s . to c o n s o l i d a t e a c t u a l demographic i n f o r m a t i o n on the s i z e and growth of the t a r g e t p o p u l a t i o n of p o i n t grey, vancouver and province wide. to i d e n t i f y and determine the s i z e of the gap between independent l i v i n g and long-term care f a c i l i t i e s (see chapter - . . ) with the t a r g e t p o p u l a t i o n , to provide a c o s t e f f e c t i v e n e s s a n a l y s i s of the c a p i t a l and o p e r a t i n g c o s t s of the proposed f a c i l i t i e s and the housing p a t t e r n s , comparing c o s t s to the e x i s t i n g s e n i o r s ' housing, bchmc r e n t a l housing, and long-term i n s t i t u t i o n a l care. to compare s t a f f i n g f e a s i b i l i t y of each o p t i o n , to make d e t a i l e d recommendations f o r the f a c i l i t y program implementation, i n c l u d i n g funding arrangements. . the housing p a t t e r n has been s e l e c t e d and the design a r c h i t e c t (or a r c h i t e c t u r a l firm) has been appointed. assuming t h a t the above l i s t e d major o r g a n i z a t i o n a l s t r u c t u r e s have been e s t a b l i s h e d , and major executive d e c i s i o n s reached, i t would be proper at t h i s time, f o r a design a r c h i t e c t and h i s c o n s u l t a n t s to s t a r t work i n the f o l l o w i n g sequence: step - predesign stage step - schematic design step - design development step - c o n s t r u c t i o n documents: working drawings and s p e c i f i c a - t i o n s . step - b i d d i n g or n e g o t i a t i o n step - c o n t r a c t a d m i n i s t r a t i o n on b e h a l f of the c l i e n t at the a c t u a l c o n s t r u c t i o n step - post c o n s t r u c t i o n p r o j e c t i n s p e c t i o n s findings and thesis conclusion t h i s t h e s i s has been developed as a r e s e a r c h c y c l e based on -phase s c i e n t i f i c methodology of a n a l y s i s , s y n t h e s i s and e v a l u a t i o n ( i n t r o d u c t i o n , p. ). phase of the t h e s i s - a n a l y s i s scope of research: research a t t h i s phase was c a r r i e d out i n two d i s t i n c t i v e d i r e c t i o n s . f i r s t l y , an overview of the e x i s t i n g trends i n contemporary f a c i l i t i e s f o r the e l d e r l y with emphasis on the m u l t i l e v e l approach (general background of the t h e s i s ) . second- l y , an a n a l y s i s of e l d e r l y housing options and s e r v i c e s i n vancouver west s i d e i n general and west p o i n t grey i n p a r t i c u l a r ( s p e c i f i c background of the t h e s i s ) . f i n d i n g #a : "time" becomes the paramount f a c t o r i n the e n t i r e programm- i n g and design process f o r the e l d e r l y . time means t h a t every- t h i n g i n t h i s process i s dynamic, not s t a t i c and the, program should r e f l e c t t h i s phenomenon. the a r c h i t e c t should plan and design not f o r a s p e c i f i c group of people, but f o r the e l d e r l y who w i l l have a v a r i e t y of needs d i f f i c u l t to c l a s s i f y at one p o i n t of time. t h e r e f o r e , the "time" f a c t o r must be addressed on the p r i n c i p l e of f l e x i b i l i t y , a d a p t a b i l i t y and the continuum of care. f i n d i n g #a : the n o t i o n of m u l t i - l e v e l of care of the e l d e r l y continues to gain momentum. according to the canadian m e d i c a l a s s o c i a t i o n , the p r o v i s i o n of a continuum of care, with the v a r i o u s elements b l e n d i n g together, should be the u n d e r l y i n g p r i n c i p l e i n p l a n n i n g s e r v i c e s f o r the e l d e r l y (ch. , . .). f i n d i n g #a : there i s a r e a l need i n west p o i n t grey area f o r a m u l t i - l e v e l f a c i l i t y with graduation of care organized and d e l i v e r e d i n one s e t t i n g (ch. , . . ). f i n d i n g #a : contemporary s e n i o r s expect more than t h e i r predecessors i n terms of q u a l i t y l i f e s t y l e . they are more educated, h e a l t h y and more s o p h i s t i c a t e d i n t h e i r e x p e c t a t i o n s . they are l o o k i n g f o r an a t t r a c t i v e , n a t u r a l environment where they can enjoy: r e c r e a t i o n , h e a l t h p r o t e c t i o n , s e c u r i t y , l e i s u r e and r e t r e a t , c u l t u r a l a c t i v i t i e s and companionship (ch. , . . . feature # ). f i n d i n g #a : the major c o n s t r a i n t r e s u l t i n g i n moving the e l d e r l y person from h i s / h e r home to the f a c i l i t y i s r e l o c a t i o n s t r e s s . moving i s a traumatic experience and i f done i n v o l u n t a r l y , may have negative p s y c h o s o c i a l consequences and decrease p h y s i c a l h e a l t h (ch. , c o . # ). f i n d i n g #a : s e n i o r s would be w i l l i n g to move to the f a c i l i t y i f such a f a c i l i t y could provide them with the p o s s i b i l i t y of c o n t i n u a t i o n of t h e i r l i f e s t y l e i n terms of r e s i d e n t i a l q u a l i t y , h e a l t h care s e r v i c e s and a s o c i a l network of t h e i r choice (ch. , . . .). the a n a l y s i s p a r t of t h i s t h e s i s concludes i n chapter by developing the major o b j e c t i v e s f o r the f a c i l i t y program. they have been based on f i n d i n g s and s t r u c t u r e d to the h y p o t h e t i c a l model of the f a c i l i t y program. the ccc f a c i l i t y o b j e c t i v e s have been c o n s o l i d a t e d i n t o f i v e groups: group - l i v i n g environment o b j e c t i v e s which address the i s s u e of a safe and q u a l i t y environment. group - r e s i d e n t s ' o b j e c t i v e s which concentrate on three b a s i c i s s u e s : tenure c h o i c e , h e a l t h care and s o c i a l needs. group - f a c i l i t y management o b j e c t i v e s which although emphasizing the importance of c e n t r a l i z a t i o n of s u p p o r t i v e s e r v i c e s , n e v e r t h e l e s s s t r e s s a l s o the need f o r independence, p e r s o n a l i z a t i o n and v a r i e d p h y s i c a l environment. group - community o b j e c t i v e s e x p l a i n a need f o r s u c c e s s f u l and smooth r e l a t i o n s h i p s between the ccc f a c i l i t y and the p o i n t grey community. group - neighbourhood development o b j e c t i v e s are very important f o r the a r c h i t e c t u r a l concept of the ccc f a c i l i t y and have been presented i n the form of design q u i d e l i n e s . research and f i n d i n g s i n t h i s phase gave grounds to the f o l l o w - i n g major c o n c l u s i o n s : c o n c l u s i o n #a : in order to s a t i s f y the e l d e r l y ' s unique needs the ccc f a c i l i t y has to c r e a t e a q u a l i t y environment which w i l l : . increase o p p o r t u n i t i e s f o r i n d i v i d u a l choice i n the ccc p h y s i c a l s e t t i n g . . minimize dependence and i n s t e a d encourage p e r s o n a l independence i n use of the ccc f a c i l i t y . . r e i n f o r c e the i n d i v i d u a l l e v e l of competency by p r o v i d i n g environmental support. . compensate f o r sensory and p e r c e p t u a l changes. . f o s t e r comprehension and o r i e n t a t i o n i n the new environment. . encourage s o c i a l i n t e r a c t i o n between r e s i d e n t s (and v i s i t o r s ) . . s t i m u l a t e p a r t i c i p a t i o n i n a c t i v i t i e s . . provide o p p o r t u n i t i e s f o r i n d i v i d u a l p r i v a c y . . improve the p u b l i c image of the e l d e r l y . c o n c l u s i o n #a : in terms of c o n t i n u a t i o n of the e l d e r l y person's l i f e s t y l e , the r e s i d e n t s have to be p r o v i d e d with choice to s a t i s f y t h e i r needs: r e s i d e n t i a l , h e a l t h care and s o c i a l . c o n c l u s i o n #a : the ccc f a c i l i t y has to be programmed as being a p a r t of the p o i n t grey community but not as an i s o l a t e d i s l a n d f o r i t s r e s i d e n t s only. phase of the t h e s i s - s y n t h e s i s scope of f a c i l i t y programming in t h i s phase i continued an " a r c h i t e c t u r a l i n v e s t i g a t i o n " which focused on " f a c i l i t y programming" f o r an i n n o v a t i v e approach to a continuum of care f a c i l i t y (ch. & ). the approach i have assumed had two d i s t i n c t i v e f e a t u r e s : a l t e r n a t i v e approach: . which means t h a t the ccc p r o v i d e s p r o g r e s s i v e care: a. continuum of care system from independent l i v i n g to extended care, b. continuum of l i v i n g environment ("home l i k e " ) . . provide an o p p o r t u n i t y f o r a choice i n terms of: a. l i v i n g arrangements - tenure, p h y s i c a l environment b. p e r s o n a l s e r v i c e s - the core centre c. s o c i a l s e r v i c e s - the core centre d. h e a l t h care s e r v i c e s - the core centre . s e n s i t i v e design i . e . : l i v i n g u n i t s i n the long term care c l u s t e r s , i s s u e s : wayfinding, community f e e l i n g . innovative approach: a new methodology has been i n t r o d u c e d i n t o the programming process: . space f l e x i b i l i t y : a dynamic not s t a t i c model i n the i n t e r - mediate and extended care p o r t i o n by assuming a c l u s t e r arrangement. . the core centre with i t s program components can be e a s i l y changed a c c o r d i n g to the a c t u a l needs of the e l d e r l y , i . e . : a r t s & c r a f t s ( d i f f e r e n t a c t i v i t i e s ) , auditorium and programs or c l i n i c may be expanded. . the long term care f a c i l i t y may be expanded by p r o v i d i n g a new c l u s t e r f o r a d d i t i o n a l p a t i e n t s or by p r o v i d i n g s p e c i a l care f o r alzheimer's p a t i e n t s . c o n c l u s i o n #s : the ccc f a c i l i t y may c r e a t e a q u a l i t y environment through f o u r major f u n c t i o n a l components: r e s i d e n t i a l , long-term care, community-services and outdoor a c t i v i t y spaces. c o n c l u s i o n #s : the u n d e r l y i n g p r i n c i p l e i n p l a n n i n g housing and s e r v i c e s f o r the contemporary e l d e r l y has to be based on the continuum of care i n c l u d i n g the f o l l o w i n g f e a t u r e s : . r e s i d e n t i a l c l u s t e r p a t t e r n (ch. , . . .). . c l u s t e r i d e n t i t y (ch. , . . . .). . sense of s e c u r i t y (ch. , . . . .). . o p p o r t u n i t i e s f o r s o c i a l i n t e r a c t i o n (ch. , . . . .). . a c c e s s i b i l i t y to a l l f a c i l i t i e s . . p r i v a c y (ch. , . . . .). . home-like atmposphere i n a l l types of f a c i l i t i e s : independent l i v i n g (ch. , i n t r o d u c t i o n ) . intermediate care (ch. , . . .) extended care (ch. , . . ., issue # ). . sense of r e s i d e n c y (ch. , . . ., issue # ). . space f l e x i b i l i t y (ch. , . . ., issue # ). . wayfinding (ch. , . . . ., . . ., issue # ). the above noted u n d e r l y i n g p r i n c i p l e f o r housing the e l d e r l y can be summarized b r i e f l y : to provide a q u a l i t y environment f o r the , e l d e r l y which w i l l be a c o n t i n u a t i o n of the environment they were l i v i n g i n so f a r and which w i l l provide a l l necessary s u p p o r t i v e f a c i l i t i e s i n terms of s o c i a l , emotional and h e a l t h care need. c o n c l u s i o n #s : the core centre with i t s s e r v i c e s becomes the paramount f u n c t i o n a l component i n c r e a t i o n of the q u a l i t y environment f o r the e l d e r l y and a l s o an important and necessary l i n k with the r e s t of the community. i t i s the core centre, which p l a y s the s i g n i f i c a n t r o l e i n the c r e a t i o n of a c h e e r f u l , p l e a s a n t , secure and f r i e n d l y atmosphere i n the ccc environment. a l s o , i t i s core centre which has to serve the r e s i d e n t s of the ccc and the e n t i r e community: r e h a b i l i t a t i o n centre, c l i n i c , pharmacy, main concourse, food s e r v i c e s , food f a i r , a r t s and c r a f t s , l i b r a r y , auditorium and indoor r e c r e a t i o n programs. the core centre comprised of major f u n c t i o n a l components, each of them i n c l u d i n g s e v e r a l a c t i v i t y c e n t r e s , has to respond e f f e c t i v e l y to e l d e r l y ' s needs by c r e a t i n g s p e c i f i c ambiance. some of the program f e a t u r e s s p e c i a l l y important to achieve t h i s o b j e c t i v e are: . winter garden - conservatory ( . . . .a) . l o c a t i o n of m a i l boxes ( . . . .b) . food f a i r - d i n i n g ( . . ) . r e h a b i l i t a t i o n centre with swimming pool, sauna, whirpool, bar, f i t n e s s & dancing club ( . . ) . a r t s and c r a f t s ( . . ) . auditorium and s p e c i a l programs ( . . ) . l i b r a r y ( . . ) c o n c l u s i o n #s : the s p e c i a l l y designed f a c i l i t y common outdoor space b r i n g s a s i g n i f i c a n t c o n t r i b u t i o n to the w e l l - b e i n g of the e l d e r l y . t h i s program component p r o v i d e s s t i m u l a t i o n , enhances r e s i d e n t s " s e l f - e s t e e m and c r e a t e s an o p p o r t u n i t y f o r s o c i a l i n t e r a c t i o n and i n t e g r a t i o n with the p o i n t grey community. i t p r o v i d e s f o r a " t h e r a p e u t i c park" designed to meet the needs of the p h y s i c a l - l y f r a i l and garden p l o t s f o r those i n t e r e s t e d i n h o r t i c u l t u r e . phase of the t h e s i s - e v a l u a t i o n scope of i n v e s t i g a t i o n in the l a s t and f i n a l phase i have i n v e s t i g a t e d how success- f u l l y the program can be implementated on the t e s t s i t e and what o p p o r t u n i t i e s and c o n s t r a i n t s e x i s t s . furthermore, i have e l a b o r a t e d design g u i d e l i n e s and recommendations on how the program o b j e c t i v e c o u l d be met i n a given r e a l s i t u a t i o n . i have concluded by p r o v i d i n g a l t e r n a t i v e housing development options i n f o u r p a t t e r n s . f i n d i n g s r e f e r to the s i t e a n a l y s i s . c o n c l u s i o n s r e f e r to the f e a s i b i l i t y of program implementation. f i n d i n g #e : the " f e d e r a l n a t i o n a l defence lands", the t e s t s i t e , p r o v i d e s a number of o p p o r t u n i t i e s f o r s u c c e s s f u l program implementation: . complies with the area p l a n p o l i c y of the vancouver p l a n n i n g department. . ensures a b e a u t i f u l s e t t i n g and v a s t land. . is l o c a t e d c l o s e to commercial o u t l e t s : th avenue, alma & broadway. . is l o c a t e d c l o s e to r e c r e a t i o n a l amenities: j e r i c h o beach, j e r i c h o tennis club, royal vancouver yacht club. . is i n p r o x i m i t y to the u n i v e r s i t y h o s p i t a l , ubc s i t e . . is c l o s e to p u b l i c bus t r a n s p o r t a t i o n . . has a v a r i e d topography p r o v i d i n g m a g n i f i c e n t views. . is a "green o a s i s " i n the p o i n t grey area with s u b s t a n t i a l q u a n t i t i e s of t r e e s and shrubs. f i n d i n g #e : the t e s t s i t e poses some c o n s t r a i n t s which have to be overcome i n order to implement the program s u c c e s s f u l l y : . heavy t r a f f i c and noise from th avenue. . steep slope of the s i t e i n the southwest area. . need f o r a p e d e s t r i a n overpass to j e r i c h o beach park. c o n c l u s i o n #e : the s u b j e c t s i t e would make a p e r f e c t p l a c e f o r the f u t u r e development of a f a c i l i t y f o r s e n i o r s . t h i s s i t e o f f e r s s e v e r a l advantages such as a l o c a t i o n i n the core of the p o i n t grey r e s i - d e n t i a l area, easy access to shopping and community s e r v i c e s , walking d i s t a n c e to park and p u b l i c r e c r e a t i o n a l f a c i l i t i e s as w e l l as p r o x i m i t y to u.b.c. c o n c l u s i o n #e : the s i t e area ( . acres) i s an s u c c e s s f u l program implementation now expansion. c o n c l u s i o n #e : the s i t e and i t s l o c a t i o n has a g r e a t p o t e n t i a l f o r easy to achieve a r c h i t e c t u r a l c h a r a c t e r compatible with the surrounding neighbourhood. e x c e l l e n t p l a c e f o r and f o r the f u t u r e general t h e s i s c o n c l u s i o n t h i s t h e s i s has developed a h y p o t h e t i c a l model of the continuum of care complex i n terms of a f a c i l i t y program i n the r e a l s i t u a t i o n of the p o i n t grey community on the s e l e c t e d t e s t s i t e . a "continuum of care" environment f o r the e l d e r l y has been d e f i n e d i n terms of a program of housing as w e l l as p e r s o n a l , s o c i a l and h e a l t h care s e r v i c e s a v a i l a b l e on one s i t e . that environment, which c o u l d be s u c c e s s f u l l y developed and implement- ed on the s u b j e c t s i t e , may s a t i s f y a broad range of needs f o r the e l d e r l y : p h y s i c a l , p h y s i o l o g i c a l and s o c i o p s y c h o l o g i c a l . references a gentle echo. a r c h i t e c t u r a l record. , nov., p. . advance p l a n n i n g and research f o r a r c h i t e c t u r e , apra. . f a c i l i t i e s program f o r the george derby long term care society!! vancouver, b.c. aging p o p u l a t i o n increases housing pressure. the c o u r i e r . vancouver: a p r i l , . alexander, c h r i s t o p h e r et a l . . a p a t t e r n language. new york: oxford u n i v e r s i t y press. b.c. h o s p i t a l program. . extended care design guide- l i n e s . v i c t o r i a , b.c.. b.c. r e g u l a t i o n / . . community care f a c i l i t y act. berger, e., r. godin, and a.c. harvey. . older canadians: housing market c h a r a c t e r i s t i c s and demand. in g.m. gutman and n.k. b l a c k i e ed. aging i n place - housing adaptations and options f o r remaining i n tfte community. burnaby, b.c. gerontology research centre. simon f r a s e r u n i v e r s i t y , pp. - . burris-mayer, harold and e. cole. . theatres and a u d i t o r iums. new york: robert e. k r i e g e r p u b l i s h i n g co. bustat, leo k. . animals, aging, and aged. m i n n e a p o l i s : u n i v e r s i t y of minnesota press. canada mortgage and housing c o r p o r a t i o n . housing choices f o r older canadians, nha . canada mortgage and housing c o r p o r a t i o n . . a home s e l e c t i o n guide. nha / canada mortgage and housing c o r p o r a t i o n . . nursing homes and h o s t e l s with care s e r v i c e s f o r the e l d e r l y : design g u i d l i n e s . nha . canadian m e d i c a l a s s o c i a t i o n . . health care f o r the e l d e r l y : today's challenges, tomorrow's optionst department of communications and government r e l a t i o n s , canadian medical a s s o c i a t i o n . carp, frances. . the impact of planned housing. in regnier, v. and j . pynoos. ed. housing the aged: design d i r e c t i v e s and p o l i c y c o n s i d e r a t i o n s . e l s v i e r science p u b l i s h i n g co.,inc. pp"! - . carstens, diane y. . s i t e planning and design f o r the e l d e r l y - issues, g u i d e l i n e s and a l t e r n a t i v e s . mew york: van nostrand reinhold co. centre f o r c o n t i n u i n g education. . housing information f o r those approaching retirement. vancouver, u.b.c. champagne j.r., and s. b r i n k . . b u i l d i n g p r a c t i c e note: designing homes f o r the aged. n a t i o n a l research c o u n c i l , canada. c i t y p l a n n i n g department. . understanding vancouver's housing, p a r t i v ( a ) : " a f f o r d a b l e housing" who requires a s s i s t a n c e ? vancouver c i t y h a l l . cjp a r c h i t e c t s calberg jackson p a r t n e r s . . st. v i n c e n t ' s extended care h o s p i t a l - space program. c l u f f , pamela. . housing f o r the e l d e r l y . in c a r t e r novia ed. aging i n canada. eaton h a l l , king seneca c o l l e g e , o n t a r i o , oct. de c h i a r a , j . and j . c a l l a n d e r . . time saver standards f o r b u i l d i n g types. new york: mcgrow-hill. de c h i a r a j . and lee koppelman. . s i t e planning standards. new york: mcgrow-hill. e r n s t & whinney. . c o n t i n u i n g care retirement communities: an i n d u s t r y i n a c t i o n t washington, dc: aaha p u b l i c a t i o n s . g a r d i n e r thornton p a r t n e r s h i p , the. . st. michael's centre f u n c t i o n a l and space program. . . burnaby general h o s p i t a l program f o r expansion. gaskie, margaret. . a l i t t l e help: housing f o r the aging. a r c h i t e c t u r a l record, a p r i l : pp. - . green, isaac e t a l . . housing f o r the e l d e r l y develop- ment process. the michigan state housing development a u t h o r i t y . green, kevin w. . desing f o r aging. a r c h i t e c t u r a l technology, pp. - . g r u f f y d d , bodfan. . landscape a r c h i t e c t u r e f o r new h o s p i t a l s . king edward's h o s p i t a l fund f o r london. gutman, g l o r i a m. . s e n i o r c i t i z e n ' s housing study report no. ; a f t e r the move - a study of reaction to m u l t i and u n i - l e v e l accommodation f o r s e n i o r s . vancouver, b.c.: u n i v e r s i t y of b r i t i s h columbia. . . the long term impact of m u l t i - l e v e l , m u l t i - s e r v i c e accommodation f o r s e n i o r s . sfu: gerontology centre. . . continuum of care retirement communities i n the canadian context: a note of cautiont paper presented at the cmhc n a t i o n a l conference "options: housing f o r older canadians" h a l i f a x , october - . . focus group study of s e n i o r s ' reactions to new v i s t a ' s community concept. sfu: gerontology research centre. , ed. . canada's changing age s t r u c - t u r e : i m p l i c a t i o n f o r the future"! burnaby, b.c.: simon f r a s e r u n i v e r s i t y . gutman, g l o r i a m. and norman k. b l a c k i e ed. . aging i n p l a c e , housing adaptations and options f o r remaining i n the community. burnaby, bc: gerentology research centre, simon f r a s e r u n i v e r s i t y . gutman, g., s. m i l s t e i n , and v. doyle. . a t t i t u d e s of s e n i o r s to s p e c i a l retirement housing, l i f e tenancy arrangements and other housing options! canada mortgage and housing c o r p o r a t i o n , november. gvrhd, extended care subcommittee. june . regional g e r i a t r i c care planning model f o r the greater vancouver regional h o s p i t a l d i s t r i c t " ! h a u s j a r v i h e a l t h centre and old people's home design competition. a r k k i t e h t u u r i k i l p a i l u j a . , , pp. - . hogland, david j . . housing f o r the e l d e r l y : p r i v a c y and independence i n environments f o r the aging. new york: van nostrand reinhold co. jordan, joe. . s e n i o r center design. washington d.c.: the n a t i o n a l c o u n c i l on the aging. katchner, aaron h. . are companion animals good f o r your h e a l t h . aging, (sept.-oct.), nos — , - . k o n c e l i k , joseph a. . designing the open nursing home. stroudsburg, pennsylvania: dowden, hutchinson & ross inc. k o t i l a i n e n , h e l i . . more human health f a c i l i t i e s . r e s u l t s of an a r c h i t e c t u r a l competition. world h o s p i t a l s , v o l . xxiii, nos. & , october. lawton, powell m. . environment and aging. albany, new york: center f o r the study of aging. mcafee a., and l. donegani. . e l d e r l y homeowners and family housing. q u a r t e r e l y review ( , ), october, pp. - . mecca ventures i n t e r n a t i o n a l l t d . - . community resource d i r e c t o r y f o r s e n i o r s . westbound p u b l i s h i n g house l t d . murray, c h a r l o t t e . . supportive housing f o r s e n i o r s : the elements and issues" f o r a canadian model. research d i v i s i o n canada mortgage and housing c o r p o r a t i o n . northwood multi-purpose centre, p h y s i c a l f a c i l i t i e s data l i s t . h a l i f a x , nova s c o t i a . palmer, mickey. . the a r c h i t e c t s ' guide to f a c i l i t y pro- gramming. the american i n s t i t u t e of a r c h i t e c t u r e , new york. p a s t a l a n , leon a. , ed. retirement communities: an american o r i g i n a l . new york: the haworth press. p a t r i c , thomas. . s e l e c t e d r e h a b i l i t a t i o n f a c i l i t i e s i n the u n i t e d s t a t e s . washington d.c.: u.s. department of h e a l t h , education and welfare. p r i e s t , gordon e. . l i v i n g arrangements of canada's e l d e r l y : changing demographic and economic f a c t o r s . burnaby, b.c.: gerentology research centre, simon f r a s e r u n i v e r s i t y . putsep, e r v i n . . modern h o s p i t a l - i n t e r n a t i o n a l p l a n n i n g p r a c t i c e s . london: lloyd-luke l t d . r e b a l s k i , nick. . zoning f i g h t sparks f e a r of s e n i o r s ' housing shortage. the vancouver sun, september . regional g e r i a t r i c care planning model f o r the greater vancouver regional h o s p i t a l d i s t r i c t . . extended care subcommittee of the gvrhd, june. regnier v i c t o r and jon pynoos. . housing the aged: design d i r e c t i v e s and p o l i c y c o n s i d e r a t i o n s . new york: e l s e r v i e r science p u b l i s h i n g co. r e i z e n s t e i n carpman, janet e t a l . . design t h a t cares. american h o s p i t a l a s s o c i a t i o n . rogers, maureen h. . northwood incorporated a case study i n community development. research paper -education b. dalhousie u n i v e r s i t y , march. rush, r i c h a r d . the age of the aging. p r o g r e s s i v e a r c h i - t e c t u r e , no. , , pp. - . seaton, r i c h a r d w. and m i r u n l i n i rajan. . review of age - sex - s p e c i f i c c h a r a c t e r i s t i c s of the canadian p o p u l a t i o n . unpublished d r a f t . shack, j o e l and g. friedman. . r e s i d e n t i a l open space design manual. prepared f o r the c i t y of toronto housing department, november. tate, jeremy. . long term care f a c i l i t i e s overview and trends. prepared f o r retirement housing course held october , . the u n i v e r s i t y of b r i t i s h columbia, centre f o r c o n t i n u i n g education. t a y l o r , s y l v i a , ed. . h o r t i c u l t u r e as therapy. t e c h n i c a l b i u l e t y n no. , october. the b o t a n i c a l garden: the u n i v e r s i t y of b r i t i s h columbia. unger, harlow. . u n i v e r s i t y towns show b u i l d i n g boom. canadian b u i l d i n g , january-february, p. . welch, p o l l y , v. parker and j . z e i s e l . . independence through interdependence congregate l i v i n g f o r older people. bostolil department of e l d e r a f f a i r s . vancouver h e a l t h department, c o n t i n u i n g care d i v i s o n . . annual report. vancouver c i t y h a l l . z e i s e l , john. . low rise housing for older people. washington d.c.: u.s. government p r i n t i n g o f f i c e . z e l v e r , a l v i n . . model f o r planning a s p e c i a l neighbour hood. in lawton, powell ed. community p l a n n i n g f o r an aging s o c i e t y . pennsylvania: dowden, hutchinson & ross inc. pp. - . appendix # - p r o v i n c e of b r i t i s h columbia, m i n i s t r y of health c o n t i n u i n g care d i v i s i o n long-term care program care l e v e l d e f i n i t i o n s l e v e l s of care the c l a s s i f i c a t i o n system used by the long-term care program to d e s c r i b e i n d i v i d u a l s with s i m i l a r types of h e a l t h care needs c o n s i s t s of three major groupings - p e r s o n a l care, intermediate care, and extended care. w i t h i n these groupings, intermediate care has been f u r t h e r d i v i d e d i n t o l e v e l s i, i i , and i i i . these care l e v e l s move i n a p r o g r e s s i o n from l i g h t e r care r e q u i r e - ments of p e r s o n a l care, through the intermediate care l e v e l s to the h e a v i e r care requirements of extended care. b r i e f l y summarized, the care l e v e l s are: p e r s o n a l care t h i s l e v e l of care r e c o g n i z e the i n d i v i d u a l who i s independent- l y mobile, with or without mechanical a i d s , and whose primary need i s f o r minimal n o n - p r o f e s s i o n a l s u p e r v i s i o n and /or a s s i s t a n c e with the a c t i v i t i e s of d a i l y l i v i n g f o r the purpose of a c h i e v i n g or m a i n t a i n i n g maximum p e r s o n a l independence i n everyday a c t i v i t i e s . intermediate care the three intermediate care l e v e l s b u i l d on the p e r s o n a l care l e v e l and r e c o g n i z e a need f o r care p l a n n i n g and s u p e r v i s i o n under the d i r e c t i o n of a h e a l t h care p r o f e s s i o n a l by i n t r o d u c - i n g a combination of p r o f e s s i o n a l and n o n - p r o f e s s i o n a l ( l a y ) s u p e r v i s i o n . t h i s p r o f e s s i o n a l s u p e r v i s i o n i s r e q u i r e d on a d a i l y r a t h e r than a twenty-four hour b a s i s . i n d i v i d u a l s a t the intermediate care l e v e l s are ambulant with or without mechanical a i d s . intermediate care i t h i s l e v e l of care r e c o g n i z e s the i n d i v i d u a l who i s independent- l y mobile with or without mechanical a i d s , r e q u i r e s moderate a s s i s t a n c e with the a c t i v i t i e s of d a i l y l i v i n g , and who r e q u i r e s d a i l y p r o f e s s i o n a l care and/or s u p e r v i s i o n . intermediate care i i t h i s l e v e l o l care r e c o g n i z e s h e a v i e r care and/or s u p e r v i s i o n r e q u i r i n g a d d i t i o n a l care time. intermediate care i i i t h i s l e v e l of care p r i m a r i l y recognize the i n d i v i d u a l who e x h i b i t s severe b e h a v i o u r a l d i s t u r b a n c e s on a c o n t i n u i n g b a s i s and who p r e s e n t s a s i g n i f i c a n t mangement problem. t h i s l e v e l a l s o recognize the i n d i v i d u a l who has very heavy care requirements which r e q i r e s i g n i f i c a n t s t a f f time to manage. in both i n s t a n c e s , t h i s l e v e l of care r e q u i r e s c o n s i d e r a b l e s u p e r v i s i o n and/or a s s i s t a n c e under the d i r e c t i o n of a h e a l t h care p r o f e s s i o n a l . extended care t h i s l e v e l of care recognize the person with a severe c h r o n i c d i s a b i l i t y which has u s u a l l y produced a f u n c t i o n a l d e f i c i t which r e q u i r e s twenty-four hour a day p r o f e s s i o n a l n u r s i n g s e r v i c e s and c o n t i n u i n g medical s u p e r v i s i o n , but does not r e q u i r e a l l the resources of an acute care h o s p i t a l . most persons at t h i s l e v e l of care have a l i m i t e d p o t e n t i a l f o r r e h a b i l i t a t i o n and o f t e n r e q u i r e i n s t i t u t i o n a l care on a permanent b a s i s . appendix # - a n a l y s i s of the e x i s t i n g f a c i l i t i e s f o r the e l d e r l y with d i f f e r e n t l e v e l s of dependency. the f a c i l i t i e s are: . parkwood manor - congregate house (hotel type) - p e r s o n a l care, coquitlam, b.c. - case study. . hollyburn house - p e r s o n a l care and intermediate care f a c i l i t y , north vancovuer, b.c. - case study. . extended care unit of university hospital, ubc site, vancouver, b.c. - case study. . south granville park lodge, vancouver, b.c. - p e r s o n a l and intermediate care f a c i l i t y - case study. . motion picture and television country house and hospital i n woodland h i l l s , c a l i f o r n i a - m u l t i l e v e l care f a c i l i t y . . regents point, southern c a l i f o r n i a p r e s b y t e r i a n homes - m u l t i l e v e l care f a c i l i t i e s . . san raphael commons, san raphael, c a l i f o r n i a - the independent l i v i n g housing. . st. michael's centre, burnaby, b.c. - intermediate and extended care f a c i l i t i e s . . northwood multi-purpose complex, h a l i f a x , nova s c o t i a . . kopernik lodge - p e r s o n a l and intermediate care, vancouver, b.c. . seton villa, north burnaby, b.c. - independent l i v i n g and p e r s o n a l care. . sunny manor, white rock, b.c. - independent l i v i n g and i n t e r - mediate care. appendix # - l i s t of people interviewed on the s u b j e c t of my t h e s i s : . c i t y of vancouver, vancouver health department: mrs. barbara parson, r e h a b i l i t a t i o n c o n s u l t a n t c o n t i n u i n g care d i v i s i o n . . c i t y of vancouver, p l a n n i n g department: mr. k e r i huhtala, s e n i o r planner mr. john winsor, s e n i o r planner. . c i t y of vancouver, t r a n s p o r t a t i o n branch, e n g i n e e r i n g dept.: mr. ron s l e t t , . i n t e r n a t i o n a l care c o r p o r a t i o n - i n t e r c a r e mr. walter s t e i n i n g e r , v i c e p r e s i d e n t . . bc long term care a s s o c i a t i o n : mrs. l i l i a n moreton, e x e c u t i v e d i r e c t o r . . vancouver west side health department: ms. l e s l i e t y l o r , c o o r d i n a t o r . . west end h e a l t h s e r v i c e centre: ms. bev m a r s h a l l , nurse i n r e s i d e n t i a l care f a c i l i t y (sunset towers, b a r c l a y s t r e e t ) . . south g r a n v i l l e park lodge - pc and ic f a c i l i t y i n vancovuer: mr. ed z i n k e v i c h , a d m i n i s t r a t o r . . st. m i c h a e l ' s centre - ic and ec f a c i l i t y i n burnaby: mr. g e r a l d h e r k e l , e x e c u t i v e d i r e c t o r . mr. michael g a r r e t t , a r c h i t e c t - gardiner thornton a r c h i t e c t s . . brock house s o c i e t y - day-time a c t i v i t y centre f o r s e n i o r s i n p o i n t grey: mrs. irene ovenden, e x e c u t i v e c o o r d i n a t o r . . h o l l y b u r n house - pc and ic f a c i l i t y i n north vancouver: mr. alex coruth - l a i n g p r o p e r t y l t d . , mr. j . d o l l , a r c h i t e c t - neale, s t a n i s z k i s , d o l l a r c h i t e c t s mr. kim p e r r y , landscape a r c h i t e c t . . parkwood manor - congregate house i n coquitlam: mr. stu lyon, a r c h i t e c t - waisman dewar grout c a r t e r a r c h i t e c t s . mr. r a n d a l l sharp, landscape a r c h i t e c t . . kopernik lodge: ms. irena donlon, a d m i n i s t r a t o r . mrs. hanna freyman, resident. appendix # - . u n i v e r s i t y h o s p i t a l , ubc s i t e , extended care u n i t : ms. rose murakami, a s s i s t a n t a d m i n i s t r a t o r and c h i e f nursing o f f i c e r . ms. june nakamoto, d i r e c t o r nursing s e r v i c e s . mrs. karen v a g e l a t o s , landscape a r c h i t e c t . . seton v i l l a - pc and il f a c i l i t y i n north burnaby: mrs. donna kerr, a d m i n i s t r a t o r . . sunnyside manor - ic and il f a c i l i t y white rock: mr. j . white, owner. . mr. & mrs. leon and diane kowalczyk - s e n i o r r e s i d e n t s i n the p o i n t grey area and s e v e r a l s e n i o r c i t i z e n s i n vancouver. . b r i t i s h columbia housing management commission mrs. donna m c r i r i c k , c o o r d i n a t o r . appendix # - e x i s t i n g l e g i s l a t i o n and g u i d e l i n e s : . b.c. reg. / community care f a c i l i t y act. . h o s p i t a l f o r extended care: a program and design guide, h o s p i t a l programs, m i n i s t r y of h e a l t h , v i c t o r i a , b.c., . o c c u p a t i o n a l environment r e g u l a t i o n s , workers' compensation board of b r i t i s h columbia, richmond, b.c. . . housing the e l d e r l y , canada mortgage and housing corpora- t i o n , . . nursing homes and h o s t e l s with care s e r v i c e s f o r the e l d e r l y design g u i d e l i n e s , canada mortgage and housing corpora- t i o n , . . housing an aging p o p u l a t i o n , government of canada, n a t i o n a l a d v i s o r y c o u n c i l on aging, . . housing f o r e l d e r l y people, canada mortgage and housing c o r p o r a t i o n , . . bcmhc design g u i d e l i n e s f o r family and s e n i o r housing appendix . appendix # - . housing conditions the s t a t i s t i c a l data r e p o r t e d below i s based on the r e s e a r c h paper "review of age - sex - s p e c i f i c c h a r a c t e r i s t i c of the canadian p o p u l a t i o n " r.w. seaton and m.rajan, (unpublished d r a f t ) . canada ( ) a. s e n i o r canadians are homeowners: % of the households heads aged and over own t h e i r homes % of a l l men aged and over own t h e i r homes % of a l l women aged and over own t h e i r homes as the age i n c r e a s e s past homeownership drops: % of s e n i o r s aged and over own t h e i r homes but a mortgage d e c l i n e s as age advances: % of heads aged and over had p a i d o f f t h e i r mortgages. b. d w e l l i n g types: % of a l l homeowners have a s i n g l e f a m i l y detached home. % of a l l s e n i o r s l i v e i n such above noted homes % of the e l d e r l y l i v e i n apartments ( s t o r e y s and more) % of the e l d e r l y l i v e i n m u l t i p l e d w e l l i n g s % as above i n mobile homes c. c o l l e c t i v e housing: ( ) % of" women aged and over: s i n g l e women the l a r g e s t group % of the men as above past the age : % of women and % of men l i v i n g i n c o l l e c t i v e d w e l l i n g s l i v e d i n n u r s i n g homes past the age : % of both sexes l i v i n g i n c o l l e c t i v e d w e l l i n g s l i v e d i n n u r s i n g homes british columbia: ( ) a. home ownership: % of the e l d e r l y owned t h e i r homes as the age i n c r e a s e s past - home ownership drops but even then . % of s e n i o r s and over own t h e i r homes. b. d w e l l i n g types: % of household headed by person aged and over have a s i n g l e f a m i l y detached d w e l l i n g % as above l i v e i n apartment bldg ( l e s s than storey) % as above l i v e i n apartment bldg (high r i s e ) . % as above: i n m u l t i p l e housing . % as above: i n mobile homes note: i n the p e r i o d to : the % of bc e l d e r l y p o p u l a t i o n and over l i v i n g i n s i n g l e detached d w e l l i n g s decreased from . % to . %. one of the reasons was the i n c r e a s e i n the stock of m u l t i p l e and attached d w e l l i n g s (condominiums). . income levels canada ( ) a. v a r i a t i o n of income l e v e l s between males and females: - age group: the median income f o r males was more than twice t h a t f o r females and over: medium income f o r males: $ , as above f o r females: $ , however, c o n s i d e r i n g the flow of non-cash b e n e f i t s per person (e.g. housing) i t i s much g r e a t e r to females than males. r e s u l t : money income alone do not provide an adequate b a s i s f o r comparison. b. family incomes: ( ) % of f a m i l i e s headed by person aged and over had income under $ , (median income f o r t h i s group) non-cash b e n e f i t s , such as s e n i o r c i t i z e n d i s c o n t s and s u b s i d i z e d housing and h e a l t h c a r e , c o n t r i b u t e to the economic w e l l - b e i n g of many s e n i o r c i t i z e n s , however o l d e r unattached i n d i v i d u a l s (those l i v i n g alone) are e s p e c i a l l y i n d i f f i c u l t f i n a n c i a l p o s i t i o n : %of them had income l e s s than $ , . british columbia: ( ) % of f a m i l i e s headed by person aged and over had incomes under $ , . % of o l d e r unattached persons had incomes l e s s than $ , % of above group are females . resources and services available to the seniors. in" order to d e p i c t the f u l l p i c t u r e of the contemporary e l d e r l y , i t i s necessry to review b r i e f l y the a v a i l a b l e resources and s e r v i c e s as a suplement to the p r e v i o u s l y d e s c r i b e d : housing c o n d i t i o n s and income l e v e l s . as an example, i have s e l e c t e d the e x i s t i n g s e n i o r programs, a v a i l a b l e to those l i v i n g i n west side vancouver (community resource d i r e c t o r y f o r s e n i o r s , summer - ). a. h e a l t h resources and h e a l t h a s s i s t a n c e : t~. m e d i c a l s e r v i c e s plan of bc: covers most medical, s u r g i c a l and d i a g n o s t i c s e r v i c e s . h o s p i t a l care: i n - p a t i e n t , o u t - p a t i e n t , day and emergency treatment . pharmacare: s e n i o r s pay % of d i s p e n s i n g fees; pharmacare card i s used to o b t a i n : p r e s c r i p t i o n drugs, ostomy s u p p l i e s , i n s u l i n , permanent p r o s t h e t i c a p p l i a n c e s . - long-term care program: p r o v i d e s f o r care i n : - own home - i n t e r m e d i a t e care u n i t - a d u l t day care c e n t r e - extended care u n i t s e r v i c e i n c l u d e : homemaker s e r v i c e : i n s e n i o r ' s own home ( a s s i s t a n c e with d a i l y a c t i v i t i e s ) r e s p i t e care: r e l i e f s e r v i c e f o r care g i v e r a d u l t day c a r e : s u p e r v i s i o n of h e a l t h needs r e s i d e n t i a l care s e r v i c e s : care f a c i l i t i e s . home care: nursing s e r v i c e s - p r o f e s s i o n a l n u r s i n g care physiotherapy s e r v i c e s : due to c h r o n i c h e a l t h c o n d i t i o n other e.g. : speech therapy . home support s e r v i c e s : meals-on-wheels . short stay assessment and treatment centres . veterans independent program b. housing resources: t~. s o c i a l housing r e s o u r c e s : (average r e n t s l e s s than % of gross household income) a f f o r d a b l e housing a d v i s o r y a s s o c i a t i o n b.c. housing foundation b.c. housing management commission canada mortgage and housing c o r p o r a t i o n . co-operative housing: members owing share of t o t a l p r o j e c t not i n d i v i d u a l u n i t s access b u i l d i n g a s s o c i a t i o n a f f o r d a b l e housing a d v i s o r y a s s o c i a t i o n canada mortgage and housing c o r p o r a t i o n columbia housing a d v i s o r y a s s o c i a t i o n inner c i t y housing s o c i e t y . lowermainland community housing r e g i s t r y s o c i e t y n o n - p r o f i t s o c i e t y h e l p i n g people f i n d reasonable accomodation . r e s i d e n t i a l tenancy branch - p r o v i n c i a l agency housing p r o v i n c i a l j u r i s d i c t i o n over rented r e s i d e n t i a l premises i n b.c. . s h e l t e r a i d f o r e l d e r l y renters - to a s s i s t e l i g i b l e s e n i o r s with high r e n t s . programs h e l p i n g s e n i o r t s to stay i n t h e i r own homes: a. home e q u i t y plans: homeowners can r e c e i v e monthly income based on assessed value of t h e i r house b. p r o p e r t y tax d e f e r r a l : u n t i l p r o p e r t y i s t r a n s f e r r e d or s o l d c. rrap ( r e s i d e n t i a l r e h a b i l i t a t i o n a s s i s t a n c e ) : grants or loans to low income s e n i o r s r e q u i r i n g r e s i d e n t i a l r e p a i r s d. home support s e r v i c e s . s e n i o r c i t i z e n ' s repair s e r v i c e s : low-cost minor home r e p a i r s c. f e d e r a l government income resources: t"! old age s e c u r i t y pension: a l l canadians over . guaranteed income supplement: i n a d d i t i o n to ( ). . spouse's allowance to old age s e c u r i t y pension . canada pension plan: f o r those who c o n t r i b u t e d to the plan. . unemployment insurance. government of bc: . g.a.i.n. - guarnateed a v a i l a b l e income f o r need: age b e n e f i t s to s e n i o r s l i v i n g i n bc (age & o v e r ) . . s.a.f.e.r. - s h e l t e r a i d f o r e l d e r l y renters (see . ). d. o r g a n i z a t i o n s f o r s e n i o r s : t~. b.c. s e n i o r s ' games: o r g a n i z i n g the s e n i o r s ' games on an annual b a s i s . . b.c. old age pensioners o r g a n i z a t i o n : p o l i t i c a l and s o c i a l a c t i v i t i e s . . b r i t i s h pensioners a s s o c i a t i o n (canada): b r i t i s h pensioners r e s i d e n t i n canada. . c o u n c i l of s e n i o r c i t i z e n o r g a n i z a t i o n s (cosco). . s e n i o r c i t i z e n s a s s o c i a t i o n of b.c.: s o c i a l & b u s i n e s s . . royal canadian legion: a c t i v e i n the welfare of i t s s e n i o r members. e. s e n i o r centres: . s e n i o r ' s centre s o c i e t y ; dunsmuir s t . . the brock house s o c i e t y : p o i n t grey rd. . dera s e n i o r c i t i z e n club: e. hastings st. . the e l d e r s ' network: # - w. th ave. . k i t s i l a n o neighbourhood house: w. th ave. . south g r a n v i l l e s e n i o r s f r i e n d s i p centre s o c i e t y : w. th ave. . west p o i n t grey community centre a t aberthan: w. nd ave. appendix # - table - a independent l i v i n g housing -- comperative a n a l y s i s type of u n i t s name of housing | no. of | unit types ,number and mix per centage unit total j bachelor j bed | bed+den | bed group : avondale co-op /surrey/ -- ( %) ( %) cedar co-op /surrey/ ( ) ( %) group : regent point /california/ ( %) a ( %) b ( %) hollyburn house /west vancouver/ ( . %) ( . %) ( . % ) — sunnyside manor /white rock/ ( . %) ( . % ( . % )a — )b — parkwood manor /coquitlam/ ( %) ( %) san rafael commons /calif./ ( . %) ( . %) seton villa /burnaby/ ( %)a ( % )b ( % )c ( %)a ( %)b group : mayfair house condo /p.grey area/ -- ( %) -- ( %) the cumberland condo /p.grey area/ ( %) appendix # - table - b independent l i v i n g housing -- comparative a n a l y s i s s i z e of u n i t s size of units name of housing | | bachelor | m | bed m | bed+den | m | bed m avohdale co-op cedar co-op — — group regent point a b hollyburn house sunnyside manor a b "*** "~~ parkwood manor a b c san rafael . a b seton villa a b . c a b group mayfair house a b the cumberland a b c appendix # - the extended care u n i t of ubc health science h o s p i t a l a r c h i t e c t - paul smith a s s o c i a t e s landscape a r c h i t e c t - torrence/vagelatos l t d . and paul smith a s s o c i a t e s . . s i t e context the extended care u n i t i s l o c a t e d i n the group of medical b u i l d i n g s i n the c e n t r a l p a r t of the ubc campus. the medical f a c i l i t i e s are bounded from east by westbroook m a l l and from north by the main entrance route - u n i v e r s i t y boulevard. the f a c i l i t y i s l o c a t e d i n the southern p a r t of the complex and to the n o r t h there i s an adjacent acute care u n i t , to the e a s t there i s a n e i g h b o r i n g p s y c h i a t r i c u n i t . to the south the f a c i - l i t y looks to a huge open space while to the west there i s a health science m a l l . . general space concept the f i v e s t o r e y b u i l d i n g comprises three ward wings and the c e n t r a l p a r t with the main common space i n c l u d i n g n u r s i n g s t a - t i o n , lounges, and the a u x i l i a r y f a c i l i t i e s . on the ground f l o o r l e v e l there are lounges and a space f o r p h y s i o t h e r a p y which overlook a small but a very p l e a s a n t garden to the south. between extended care and acute care b u i l d i n g s there i s a . acre park which was o r i g i n a l l y c r e a t e d f o r the p a t i e n t s of both f a c i l i t i e s by two d i f f e r e n t a r c h i t e c t u r a l and landscape a r c h i t e c - t u r a l f i r m s . the p a t i e n t park was designed by landscape a r c h i - t e c t karen vagelatos while the small south garden - p a t i o was de- signed by a r c h i t e c t s paul smith a s s o c i a t e s . south garden - p a t i o . design d e c i s i o n and o b j e c t i v e s a. provide a s m a l l but a t t r a c t i v e outdoor open space f o r p a t i e n t s (wheelchair a c c e s s i b l e ) b. provide s p e c i a l f e a t u r e s f o r the a c t i v i t i e s of the e l d e r l y such as r a i s e d p l a n t e r s , sunny group a c t i v i t i e s area - checkerboard and s h u f f l e b o a r d c. c r e a t e garden on a slope r i c h i n p l a n t m a t e r i a l . a n a l y s i s of f i n d i n g s the a r c h i t e c t has c r e a t e d on aprox s . f . area a very p l e a s a n t open space - p a t i o f o r the p a t i e n t s from extended care u n i t . in s p i t e of a d i f f i c u l t l o t c o n f i g u r a t i o n and a c l i f f - - l i k e steep s l o p e , the a r c h i t e c t has provided a p a t i o - garden which i s an e x t e n t i o n of the b u i l d i n g ' s ground f l o o r area. the south- ern exposure and s y n c l i n e c h a r a c t e r of the slope c r e a t e a micro- c l i m a t e which helps to provide outdoor a c t i v i t i e s f o r the pa- t i e n t s even d u r i n g the winter. the space i s s m a l l , bounded by two f o o t high wood r e t a i n i n g w a l l s which at the same time serve as r a i s e d p l a n t e r s . the p a t i o area i s f i n i s h e d with " x " concrete p a t i o pavers. in the c e n t r a l p a r t of the p a t i o , there i s a checker- board. close to the entrance, there are s e v e r a l s m a l l r a i s e d wood p l a n t e r s . each of them i s two f o o t high and 'x ' i n s i z e . however, the recommended width i s " " i n order f o r people to reach the c e n t e r of the bed. the a r c h i t e c t s ' i d e a was to provide a p l e a s a n t environment as w e l l as outdoor a c t i v i t i e s f o r the e l d e r l y . u n f o r t u n a t e l l y , there i s not much space f o r s h u f f l e b o a r d but a number of the e l d e r l y p a t i e n t s who are c o n f i n e d to wheelchairs can p a r t i c i p a t e i n a h o r t i c u l t u r e therapy program. besides the r a i s e d beds, the p a t i o has been r e c e n t l y e n r i c h e d by a c i r c u l a r greenhouse, spe- c i a l l y designed f o r the wheelchair p a t i e n t s . the p l a n t m a t e r i a l on the slope i s designed f o r the f o u r - s e a - son c y c l e ; however, the most a t t r a c t i v e p l a n t s are annuals p l a n t - ed by the r e s i d e n t s themselves. the p a t i e n t park . design d e c i s i o n and o b j e c t i v e s a. c r e a t e outdoor open space f o r p a t i e n t s of the extended care u n i t and acute care u n i t b. provide many s e m i - p r i v a t e spaces connected to the com- mon open space c. c r e a t e a water f e a t u r e as v i s u a l i n t e r e s t d. provide a loop around the w a t e r f a l l e. u t i l i z e an area of the park i n t e n s e l y f. provide b a r r i e r - f r e e design throughout g. reduce impact of v e h i c u l a r t r a f f i c on health science m a l l h. connect the park area with the extended care u n i t and acute care u n i t i . provide p l a n t e r s with r a i s e d beds . a n a l y s i s of f i n d i n g s the p a t i e n t park i s l o c a t e d on . acres adjacent to the west e l e v a t i o n of the acute care u n i t and the north p a r t of the extended care f a c i l i t y . to the west, the park i s bounded by health science road. the landscape a r c h i t e c t s ' o b j e c t i v e s have been implemented, except f o r the loop around the w a t e r f a l l . p a t i e n t park i s one of the most p l e a s a n t p l a c e s to enjoy outdoor environment at the u.b.c. campus. the task f o r the landscape a r c h i t e c t was c h a l l e n g i n g because of the small area, sloped grounds and v a r i e t y of u s e r s . the r e - s u l t i s impressive, s i n c e the park i s a wonderful r e t r e a t , not o n l y f o r the p a t i e n t s and t h e i r v i s i t o r s , but a l s o f o r the s t a f f and passerby. the whole open area s t r e t c h e s along the north-- south a x i s with the water f a l l on the c l o s u r e of the long v i s t a . the general i d e a of the landscape a r c h i t e c t was to c r e a t e maximum o p p o r t u n i t i e s f o r s o c i a l i n t e r a c t i o n as w e l l as f o r p r i v a c y w i t h i n a s a l u t a r y environment. t h e r e f o r e , the landscape a r c h i t e c t has c r e a t e d a park which serves both: as a common space f o r p a t i e n t - r e s i d e n t group a c t i v i t i e s and as s e m i - p r i v a t e spaces f o r i n t i m a t e g a t h e r i n g with f r i e n d s and f a m i l i e s . however, the p r i n c i p a l theme of a whole composition was a water f e a t u r e . the landscape a r c h i t e c t has provided a movement to e n l i v e n s t a t i c elements of the design and thus provide stimu- l a t i o n f o r the p a t i e n t s . by the same token she has c r e a t e d a sym- b o l i c p l a c e where a water f e a t u r e symbolizes " l i f e " . the water- f a l l , designed as a s c u l p t u r e d w a l l which g l i t t e r s i n s u n l i g h t , p r o v i d e s a v i s u a l magnet as w e l l as t r a n q u i l i t y to the park and r e l a t e s harmoniously with the t o t a l space. above the w a t e r f a l l there i s a s m a l l p l a t e a u with evergreen shrubs which a l s o sym- b o l i z e c o n t i n u i t y of l i f e . the open space comprises f o u r small s e m i - p r i v a t e enclaves with sunny exposure which are surrounded by t r e e s , r a i s e d p l a n - t e r s and a c e n t r a l p l a z a . the f l o o r of the open space i s paved with exposed aggregate. the a i s e d bed p l a n t e r s are a l s o i n c o n c r e t e . during the summer time there i s white garden f u r n i t u r e which p r o v i d e s a very r e c r e a t i o n a l c h a r a c t e r to the p l a c e . above the w a t e r f a l l as w e l l as around the whole p l a z a , there are p l a n t - ed s l o p e s with ( f o u r season) evergreen t r e e s and shrubs. in the southern p a r t of the park, there i s a cul-de sac f o r the extend- ed care u n i t p a t i e n t s f o r p i c k up and drop o f f which i s very gen- t l y emphasized by the arrangement of t r e e s . the c o n n e c t i o n between the park and two h e a l t h care f a c i l i - t i e s , a d i f f i c u l t problem, was s o l v e d by p r o v i d i n g a covered, paved walkway and hedges of s i m i l a r p l a n t m a t e r i a l . since the park i s a j a c e n t to h e a l t h science road, the landscape a r c h i t e c t reduced the impact of noise by c r e a t i n g a p l a n t e d mound and p u t t i n g a row of t r e e s along the road. the r a i s e d p l a n t e r s are very important f e a t u r e s f o r the e l d e r l y and are u t i l i z e d f u l l y by a h o r t i c u l t u r e therapy program. summary both outdoor open spaces, the p a t i e n t park and the south p a t i o , provide a t t r a c t i v e and u s e f u l environments f o r the e l d e r - l y p a t i e n t s . the o r g i n a l ideas of the a r c h i t e c t s and landscape a r c h i t e c t have been almost f u l l y implemented and have emphasized the f u n c t i o n of the spaces i n which c e r t a i n a c t i v i t i e s can take p l a c e comfortably and e f f i c i e n t l y . moreover, the p a t i e n t park f u l f i l l s a s t r o n g need f o r beauty and a e s t h e t i c experience by p r o v i d i n g s c e n i c , b e a u t i f u l landscape with the w a t e r f a l l as a main f e a t u r e . parkwood manor - congregate house a r c h i t e c t : waisman, dewar, grout, c a r t e r a r c h i t e c t s landscape a r c h i t e c t : r a n d a l l sharp l . s i t e context the s i t e of parkwood manor i s l o c a t e d i n h e a r t of coquitlam on acres of the b e a u t i f u l l y landscaped grounds adjacent to a w e l l - p r e s e r v e d n a t u r a l park. the f a c i l i t y i s e a s i l y a c c e s s i b l e from a l l p a r t s of the lower mainland and the f r a s e r v a l l e y by the barnet and lougheed highways. the coquitlam shopping centre i s o n l y one block away. churches, medical, l i b r a r y , and other community s e r v i c e s are a l s o i n c l o s e p r o x i m i t y to the s i t e . . general space concept the b u i l d i n g i s s i t u a t e d i n coquitlam on the c u l - d e - s a c of pacard avenue, p a r a l l e l to d u f f e r i n s t r e e t . the t h r e e - s t o r e y b u i l d i n g comprises f o u r r e s i d e n t i a l wings and a c e n t r a l p a r t with the main s o c i a l space. the main entrance, with ceremonial driveway and two a d j o i n g p a r k i n g l o t s with separete s e r v i c e access to the k i t c h e n f a c i l i t i e s , face d u f f e r i n s t r e e t . on the ground f l o o r l e v e l , i n the core of the b u i l d i n g , there are: d i n i n g room o v e r l o o k i n g the f r o n t yard, lounge and s o c i a l a c t i v i t i e s area o v e r l o o k i n g formal garden. the lounge area i s connected with the garden by a huge t e r r a c e . the ground f l o o r l e v e l d w e l l i n g u n i t s i n each of the f o u r r e s i d e n t i a l wings have d i r e c t e x i t to the grounds. . design d e c i s i o n and o b j e c t i v e s a. create a walkway loop around the whole f a c i l i t y with a r e t r e a t p l a c e c l o s e to holy creek area. b. create a formal garden on the r e a r yard c. provide b a r r i e r - f r e e access d. create f l a t game areas on grass such as croquet, pad f o r s h u f f l e - b o a r d e. provide s p e c i a l f e a t u r e f o r the a c t i v i t i e s f o r the e l d e r l y such as r a i s e d p l a n t e r s - h o r t i c u l t u r e therapy, sunny group a c t i v i t i e s area - b.b.q. f . p r o v i d e screened p a t i o f o r each u n i t on the ground l e v e l , wheelchair a c c e s s i b l e from perimeter walk g. p r o v i d e o r i e n t a t i o n - signage along path f o r the v i s u a l l y impaired r e s i d e n t s . a n a l y s i s of f i n d i n g s the landscape a r c h i t e c t has c r e a t e d an a t t r a c t i v e e n v i r o n - ment f o r the e l d e r l y r e s i d e n t s of parkwood manor by p r o v i d i n g spaces f o r s o c i a l i n t e r a c t i o n , sensory s t i m u l a t i o n as w e l l as s a f e t y and s e c u r i t y . although not a l l h i s ideas were implemented, the main con- cept of a looped walkway around the whole f a c i l i t y was c a r r i e d out. the developer r e j e c t e d the o r g i n a l idea to connect the main walkway with the holy creek area which c o u l d have been an a t t r a c - t i v e r e t r e a t d e s t i n a t i o n f o r r e s i d e n t s . moreover, the l o c a l r e s t areas along the walkway with benches (thought to serve as s o c i a l outdoor spaces) were a l s o d e l e t e d . o r g i n a l l y , the formal garden was designed as two d i f f e r e n t t e r r a c e s : the upper one with smooth t e r r a c o t t a paving overlooked a lower grass t e r r a c e . along the bank, a t the end of the upper t e r r a c e a b a l u s t r a d e was planned and below i t benches o v e r l o o k i n g rose beds f l a n k e d the grass m a l l . f a r behind there supposed to be a gazebo w i t h i n a r i n g of c h e r r i e s b u f f e r e d by e x i s t i n g hemlocks. u n f o r t u n a t e l l y , the whole i d e a was given up and now there i s o n l y a p l a i n upper t e r r a c e with benches on i t and huge grass space with some rose beds. there are n e i t h e r r a i s e d p l a n t e r s s c r e e n i n g the p r i v a t e p a r t of the open space, nor the gazebo. a l l a t t r a c t i v e and very important f e a t u r e such as a c t i v i t i e s areas with s p e c i a l game c o n s t r u c t i o n s : chess/checkers t a b l e s , sand of horseshoes, paved p a i n t e d s h u f f b o a r d , lawn's area f o r c r o q u e t t e , b a c i b a l l and others which c o u l d encourage c a s u a l p a r t i c i p a t i o n were abandoned a l s o . however, the e x i s t i n g t e r r a c e p l a y s an important r o l e as an indoor-outdoor t r a n s i t i o n area which o f f e r b e a u t i f u l garden view, comfortable s e a t i n g , easy and d i r e c t access and sense of human s c a l e . moreover, t h i s area allows v i s u a l s u r v e i l l a n c e by r e s i d e n t s and s t a f f . although the designed outdoor spaces promote s e c u r i t y and s a f e t y , as w e l l as n e g o t i a b i l i t y , the p r i v a c y i s s u e i s s t i l l c r i t i c a l one. the p r i v a t e p a t i o s were not c a r r i e d out as planned. the wooden decks has been eleminated and o n l y small concrete pads adjacent to p a t i o doors were provided. the l a c k of f e n c i n g or the other b a r r i e r i . e . shrubs and p a t i o - d e c k s on ground f l o o r yards have d i m i n i s h e d p r i v a c y and excluded the p o s s i b i l i t y t h a t r e s i d e n t s c o u l d c r e a t e t h e i r own p r i v a t e t e r r i t o r i e s and use them as such. in f a c t , these p l a c e s become u s e l e s s . moreover, l a c k of shrubs has c r e a t e d monotony of e x t e n s i v e area of grass s u r f a c e i n f r o n t of the b u i l d i n g . h o r t i c u l t u r e therapy i s another important aspect of appro- p r i a t e landscape f o r the e l d e r l y . altough the southern p a r t of the garden was the p o t e n t i a l space f o r garden p l o t s or r a i s e d p l a n t e r s f o r h o r t i c u l t u r e therapy the developer r e j e c t e d t h i s i d e a . there are many p r o o f s t h a t gardening p l a y s b e n e f i c i a l r o l e i n therapy f o r the e l d e r l y . moreover, a g r e a t e r l e v e l of d e t a i l i n g i n outdoor spaces may be p r e f e r e d by many o l d e r people to open spaces l a c k i n g d e t a i l . raised garden p l a n t e r s f o r use by people i n wheelchairs or garden p l o t s c o u l d have d i v e r s i f i e d the a c t i v i t i e s f o r the e l d e r l y by c r e a t i n g a d d i t i o n a l space f o r s o c i a l i n t e r a c t i o n as w e l l as c r e a t i n g v a r i e t y i n type and l o c a t i o n of garden areas. u n f o r t u n a t e l l y , even the bbq area has not been approved by the developer. parkwood manor i s s p e c i f i c a l l y designed f o r the e l d e r l y . t h e r e f o r e , any s o l u t i o n to provide a t t r a c t i v e and u s e f u l environment i n terms of a landscape i s very d e s i r a b l e . the o r g i n a l design s o l u t i o n s presented by the landscape a r c h i t e c t c o u l d have enhanced the l i v e s of the e l d e r l y a t the parkwood manor f a c i l i t y i f they were f u l l y implemented. hollyburn house -intermediate care and p e r s o n a l care f a c i l i t y a r c h i t e c t : neale, s t a n i s z k i s , d o l l a r c h i t e c t s landscape a r c h i t e c t : kim perry . s i t e context the s i t e of h o l l y b u r n house i s l o c a t e d i n an upper-middle c l a s s neighbourhood i n west vancouver on a sloped , s . f . l o t . h o l l y b u r n house i s p e r f e c t l y l o c a t e d as i t complies with a l l requirements f o r s i t i n g a f a c i l i t y f o r the e l d e r l y . the s i t e borders the major p u b l i c thoroughfare of marine d r i v e and two l o c a l r e s i d e n t i a l s t r e e t s , st and th. the p u b l i c bus stop i s i n f r o n t of the b u i l d i n g . across the s t r e e t there i s a p u b l i c l i b r a r y . close to the s i t e , to the west, there i s a s e n i o r s ' a c t i v i t y centre and r e c r e a t i o n a l centre with a q u a t i c f a c i l i t i e s , ice arena and t e n n i s c o u r t s . to the e a s t , there i s a memorial park with the lawn bowling green. to the north, the lane separates the h o l l y b u r n house and a n g l i c a n church. the shopping c e n t r e a t ambleside i s w i t h i n b l o c k s ; however, across the s t r e e t the new shopping complex i s under c o n s t r a c t i o n at present. to the south, w i t h i n b l o c k s , there i s a c e n t e n n i a l seawalk and r e c r e a t i o n a l area. . general space concept the b u i l d i n g i s d i v i d e d i n t o two f u n c t i o n a l p a r t s : p a r t one comprises p e r s o n a l care with s e l f - c o n t a i n e d u n i t s on the second and t h i r d f l o o r s and reception- a d m i n i s t r a t i o n area as w e l l as s o c i a l and d i n i n g spaces on the ground f l o o r l e v e l . p a r t two - intermediate care i and i i i s l o c a t e d on the ground f l o o r l e v e l and comprises s i n g l e u n i t s with a s o c i a l and d i n i n g space. the k i t c h e n and s t a f f f a c i l i t i e s are l o c a t e d i n the core of the main f l o o r l e v e l and serve these two p a r t s simutaneusly. . design d e c i s i o n and o b j e c t i v e s a. create a c c e s s i b l e ground f l o o r l e v e l i n s p i t e of a sloped s i t e b. provide as many outdoor spaces as p o s s i b l e c. u t i l i z e s m a l l spaces i n t e n s i v e l y . d. reduce impact of the p r o x i m i t y to lane and church e. p r o v i d e west vancouver v e r n a c u l a r f . p r o v i d e b a r r i e r - f r e e design throughout g. reduce impact of v e h i c u l a r t r a f f i c on marina d r i v e h. create a c t i v e garden i . create v i s u a l garden j . implement four-season p l a n t i n g m a t e r i a l . a n a l y s i s of f i n d i n g s the task f o r the landscape a r c h i t e c t was extremely d i f f i c u l t because of l i m i t a t i o n s : s m a l l area and sloped grounds. n e v e r t h e l e s s , the r e s u l t i s impressive because a l l open spaces support s o c i a l i n t e r a c t i o n , provide sensory s t i m u l a t i o n , promote s e c u r i t y and s a f e t y , u t i l z e s m a l l spaces i n t e n s i v e l y and are compatible with h o l l y b u r n house a r c h i t e c t u r e as w e l l as with the whole neighbourhood. to reduce the impact of v e h i c u l a r t r a f f i c on marina drive a sloped green zone with t r e e s and shrubs was c r e a t e d to p r o t e c t the r e s i d e n t s from noise and p o l l u t i o n . two separate entrances to p a r t one and p a r t two are designed as e n t r y c o u r t s with shrub hedges, t r e e s and p l a n t e r s with annuals and p e r e n n i a l s . there are three main patio-gardens which are i n c o r p o r a t e d i n t o the main f u n c t i o n s of the f a c i l i t y at a ground f l o o r l e v e l . t o the west, (part one) there i s a patio-garden adjacent to the lobby, lounge and d i n i n g area. t h i s p a t i o was c r e a t e d as a paved p l a t e a u surrounded by stone w a l l s as an "embankment" with t r e e s and shrub hedges along the w a l l s . the entrance to the lounge i s emphasized s p a t i a l l y by the round shape of the garden. the main o b j e c t i v e of t h i s p a t i o was to c r e a t e an open space as an e x t e n t i o n of a s o c i a l space i n the f a c i l i t y and a t the same time to provide a summer d i n i n g or outdoor room f o r the r e s i d e n t s of personal care l e v e l . to the west, of the p a t i o , there i s a v i s u a l f e a t u r e designed as a water f e a t u r e surronded by annual f l o w e r beds, c h e r r y t r e e s and shrubs. the water f e a t u r e i n c l u d e s a water j e t and water f a l l , a l l done i n a stone w a l l , the same p a t t e r n which embraces the whole s i t e . t h i s f e a t u r e i s v i s i b l e from the entrance area because i t i s s i t u a t e d on the a x i s of a c i r c u l a t i o n area on the main f l o o r of the f a c i l i t y . to the north of the b u i l d i n g , there i s an unobtrusive access to the p a r k i n g area i n the basement and l o a d i n g area a c c e s s i b l e from the lane. the second p a r t of f a c i l i t y - intermediate care has a separate entrance with an e n t r y c o u r t a t the th s t r e e t . there are two l a r g e open s p a c e s - p a t i o s which are adjacent to a d i n i n g room and lounge. the northern p a t i o i s designed as a v i s u a l garden. since i t i s adjacent to the lane, the landscape a r c h i t e c t reduced the impact of unpleasant surrounding by p r o v i d i n g an arbor with c l i m b i n g p l a n t s as a s e p a r a t i o n and a f o u n t a i n as a focus p o i n t . the f l o o r i s paved with exposed aggregate concrete f i n i s h and surrounded by n a t i v e p l a n t m a t e r i a l . although the p a t i o i s s i t u a t e d on the n o r t h s i d e of the b u i l d i n g there i s a very p l e a s a n t "home l i k e " atmosphere c r e a t e d by s m a l l human s c a l e , wooden f u r n i t u r e , v i s u a l f e a t u r e s a f o u n t a i n , an arbor and p l a n t s . t h i s v i s u a l - p a t i o encourages r e s i d e n t s to use i t as an outdoor d i n i n g area. the second p a t i o on the south s i d e of the f a c i l i t y i s c a l l e d the a c t i v e garden. there i s a lawn with a gazebo. the landscape a r c h i t e c t ' s i d e a was to c r e a t e an a c t i v e space f o r the e l d e r l y with s h u f f l e - b o a r d on a lawn as w e l l as r a i s e d beds f o r c u l t i v a t i n g e a t i n g p l a n t s . however, the developer decided on a c a s u a l landscape, easy to maintain by the a d m i n i s t r a t i o n of the f a c i l i t y . as a r e s u l t , there i s o n l y one f e a t u r e - a gazebo which p l a y s a r o l e as an covered outdoor space f o r meeting purposes. a l l three patio-gardens are b a r r i e r - f r e e ; u n f o r t u n a t e l y , there i s no p h y s i c a l connection between them. the e l d e r l y , t h e r e f o r e , can not walk around and penetrate t h e i r t e r r i t o r y . lack of r e l a t i o n s h i p between two p a r t s of f a c i l i t y negate the whole i d e a of m u l t i l e v e l care f a c i l i t y . moreover, there i s no access from intermediate care u n i t s to the open space which c o u l d serve as s e m i - p r i v a t e areas of the d w e l l i n g u n i t which i s one of the most d e s i r a b l e f e a t u r e i n the e l d e r l y housing. g e n e r a l l y , h o l l y b u r n house landscape i s a good example of a s i t e c o n t i n u i t y and c o m p a t i b i l i t y with the neighbourhood. by s e n s i t i v e design the landscape a r c h i t e c t has c r e a t e d three v a l u a b l e p a t i o s f o r the e l d e r l y r e s i d e n t s . the i d e a of p r o v i d i n g s p e c i a l garden f e a t u r e s f o r the e l d e r l y such as r a i s i n g beds, s h u f f l e - b o a r d s and implement h o r t i c u l t u r e as therapy i n the f a c i l i t y was an i n n o v a t i v e s o l u t i o n and of g r e a t value. a s e m a p i i r r o s / mkannukaan ylaiiluontaan w o w u t u i i n i " on "aikut- tanut a l m n i t i h t i uueiuluva i t m y i noltoiyttn ltt»nt«mta )a • l * » * a r l * t l . *hj»mhio }• * « * * , » • - ahkltasv* tioito adatlyttivat t*tvayat«t*uka*lea a- uoiaauutta }a luontevmitta. tarvaydanlwlto on oaa italian n o r a a * l l « t i catvltaaaia palvaluita, naktl palvalulta t > l ) » v n la itoata fiat • f l « t l t audita yhdyaliunnaita. vaan lan tulaa aakl a i a l l - isluaaati alt) arkkltafttooniian ilaiaaunaa kaut- ta totali yaplnatdnaa ooait l iviaana lain*. haub]«fvbfi taivayakaaku* on ohjalaaliaan auun auntaaaaa yahrittonaa ratannuaktntaan. t»aa on lontanut h i i h u n halollatluun rattailuun, joka aiitakaavaltaan )• buotowlaltlln hat** auialuaia p«fintalaaata l y l i a l l ) * t * . toiaaaua aan tahta** on m l * * " * laaiaapaa aiuatta, aikh kohottaa aan h i l i i y t h l c i i n lahlyaaatntona* kotoa*a«ai doai- nantikai am qttin >)ll<i aiaataan l i n i i i i i u . "yd* t m i taklun on annattu loiaiai n i . n i i u i n i i i i m on yatavimnan. autt* ayoi arvokaa. klaaataoivat f i i t t « * ( xlinaavat i i i « « ( i b « * * n pickain akataaai- aaan par mtaaaaan, inmailllnan slotauua kartoo aodarntn ftoitotyttn luontaaata. •akannutaan h j l m . t i piloiaata vantiainkoti on n - joitattu tonun itlpllhan, ]• nakamuu kanti i l t * - » u r i n k o a , ylaiatan pawaluatan oaa )* tacvay*- kaakukaan vuodaaaaato tyttntyva't torn in pohjota- raunaan latcian ataltpuolall* l**)an v«pa*-alu**n. natannukaan a l l lan ksikiuaihailt* kulka* ylainan kavyan u l l m t i . n vayla, )ok* h t t t i * earvayakaa- kukean la ottin * y l i « afiiakaaan t o i a n n i * . s pytfcli •uojautuaaan t]ontuvoliii*ntnn naitoilta. •utta kavyan l i l k i n t n n t m i i i l u n ottaa n - kaatuctaaaan hoidokkiana* (okapuaoiit i t . siaatilolan catkaiaut luovai kodtkaac* ]• nialan- vaiaiaavac auurat katiolyndyt, i i [ v i ) i i i i i g l i i n puolalla n« euovat valo* atyda alaman katcokaan adotuatiloihi*. « * y t » v l - , o l « i » u - ]« odotuati- l o u t * avautuv naayaia vuorotn itjkn j * scaiaan, kaavaiaan katutilan tavoin. potilaanuonaiaaa t o n - nukyaaauunti* ayda vuotaaaaa o l . v a l l a . nut.ka- ikkunat avaavat u i i i i i n panoraaaana. ehdotni (oroataa tatvaydan- ]a vannuacannoidon lahaiatl autidatt* yaparaivaln allaaani aikialaaa vapatol takannuat* * ] . t . u u lucntamaad a*« tx- • u , aaaoln hum luopm lit kit laavtantaan i.n l a i i a n a a l y d k a m t , l*ncina]oi><*. backman c, squires je. bmj open ; :e . doi: . /bmjopen- - open access development and psychometric testing of the senses screening tool for long- term care: a study protocol chantal backman,   , , janet e squires , to cite: backman c, squires je. development and psychometric testing of the senses screening tool for long-term care: a study protocol. bmj open ; :e . doi: . / bmjopen- - ► prepublication history for this paper is available online. to view these files, please visit the journal online (http:// dx. doi. org/ . / bmjopen- - ). received november revised march accepted april school of nursing, faculty of health sciences, university of ottawa, ottawa, ontario, canada clinical epidemiology program, ottawa hospital research institute, ottawa, ontario, canada care of the elderly, bruyère research institute, ottawa, ontario, canada correspondence to dr chantal backman; chantal. backman@ uottawa. ca protocol © author(s) (or their employer(s)) . re-use permitted under cc by-nc. no commercial re-use. see rights and permissions. published by bmj. abstract introduction as adults age, their senses tend to decline and a large portion of those most affected by sensory decline reside in long-term care. at present, the creation of a sense-sensitive environment in long-term care is a difficult task as there is minimal evidence or tools available to guide this process. the senses screening tool was developed to measure the sense-sensitivity of a particular environment, with a focus on long-term care. the purpose of this paper is to describe a study protocol to assess the psychometric properties of the newly developed senses screening tool. methods and analysis we will conduct a psychometric evaluation of the senses screening tool in long-term care based on the standards for educational and psychological testing framework. in phase i, we will seek input from international content experts (n= ) to assess the content validity of all sections of the tool. in phase ii, we will invite auditors (n= - ), residents (n= - ) and staff (n= - ) to partake in think-aloud sessions to assess response process validity. in phase iii, we will conduct field testing of the revised senses screening tool with auditors (n= ), residents (n= ) and staff (n= ) to evaluate additional measures including acceptability, inter-rater reliability, internal structure validity and internal consistency reliability, where possible. ethics and dissemination ethical approval was obtained from the university of ottawa research ethics board. findings will be disseminated through a peer-reviewed manuscript, through a dedicated website, through presentations in long-term care communities and through presentations at research conferences. background the five senses (ie, hearing, vision, smell, taste and touch) are one of the key means by which individuals interpret and interact with the surrounding environment. sensory abili- ties diminish with age. around a third of those over the age of have disabling hearing loss. serious vision impairment is also more prevalent with age, with % of all cases seen in those years or older. the sense of touch deteriorates at a rapid pace, with around % of tactile sensation lost per year from years onward. excluding the many cases of chemo- sensory disorders (eg, loss of taste or loss of smell) that go unreported due to the subtle nature of the problem, age-related sensory impairments are increasing globally. consid- ering that a large portion of those affected by sensory decline reside in long-term care (ltc) settings, the design of these facilities to accommodate these deficiencies is a topic worth exploring. at present, the creation of a sense-sensitive environment within ltc is a difficult task given that there is minimal evidence or tools available to guide this process. a recent systematic review by elf et al found that the instruments (n= ) developed to assess the physical environment in healthcare varied in their comprehensiveness of psycho- metric testing. although several instruments were developed to assess the physical environ- ment in ltc facilities, – none have looked comprehensively at the five senses. for example, both the therapeutic environment screening survey for nursing homes and the environmental audit tool have some items related to the five senses (ie, odour, lighting), however, these instruments are observational tools and do not include an all-inclusive list of items related to each of the five senses. more strengths and limitations of this study ► the psychometric methods used in this study will ensure valid and reliable research findings regarding the sense-sensitivity of long-term care facilities. ► these methods will help further refine the screen- ing tool and inform future studies to conduct further testing in other settings. ► this study may allow researchers to study the im- pact of the sense-sensitive environment on resident outcomes. ► the measure of ‘relation(s) to other variables’ will not be evaluated in this study because we found no other tools that measure the five senses constructs. ► very few items on our tool are supported by ran- domised controlled trials and therefore most items are based on untested empirical evidence.  further testing of these items are needed. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n ju n e . d o w n lo a d e d fro m http://bmjopen.bmj.com/ http://orcid.org/ - - - http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://crossmark.crossref.org/dialog/?doi= . /bmjopen- - &domain=pdf&date_stamp= - - http://bmjopen.bmj.com/ backman c, squires je. bmj open ; :e . doi: . /bmjopen- - open access recently, another tool called dining environment audit protocol incorporates some important items related to the five senses, however, it is specifically focused on the dinning environments in ltc facilities. with the increased need for an age friendly environment in ltc facilities, an in-depth focus on assessing the five senses is essential and this focus must include considerations about the environment, the perspectives of staff and most importantly, the perspectives of residents. ltc settings that support and adopt interventions to enhance sensory capacities will excel in creating a stim- ulating and enriching environment for their residents. the senses screening tool was designed to assess current sense-sensitive practices and also to serve as a tool to help identify opportunities for improvement in any ltc setting regardless of its current state. the purpose of this paper is to describe a study protocol to assess the psychometric properties of the newly developed senses screening tool. development of the senses screening tool the development of the senses screening tool was guided by ecological model of lawton and nahemow. older adults are particularly sensitive to their environ- ment as a result of the increasing number of sensory impairments that result from old age. according to the ecological model, in order to maintain independence and quality of life, an older adult’s capacity and demands on the environment must be in congruence. lawton et al argue that the physical environment has the potential to enhance or constrain an individual as they age. there- fore, the physical environment must be adjusted to suit the needs of individuals in the later stages of their life. the senses screening tool was developed to measure the sense-sensitivity of a particular environment, with a focus on ltc. the practices identified in the screening tool are based on the results of a systematic review. in this review, we collated all current knowledge examining the relationship between the sensory practices and the quality of life of residents living in ltc settings. the search strategy yielded articles of which articles were eligible for full-text screening. a total of studies were included in the final data extraction. the most common interventions reported were related to: touch (n= ), vision (n= ), smell (n= ), hearing (n= ) and more than one sense (n= ). no studies were found on taste (n= ). examples of interventions reported in the included studies were: sound and music, multisensory environments, aromatherapy, therapeutic touch, pet therapy, massage, lighting therapy, gardens and use of art or pictures. the results of this systematic review were used to assist with the development of the senses screening tool. the key principles of the tool were that it had to ( ) be comprehensive in scope, ( ) provide simple ways to action and prioritise the gaps discovered and ( ) be user friendly. the senses screening tool assesses the sense-sensitivity of the environment, and captures the related organisational policies and procedures as well as resident and staff perspectives about the sense-sensitivity of the environment. the senses screening tool guides the user through the following steps: a walkthrough of the environment (section —facility level), a review of the policies and procedures (section —facility level), an assessment of resident perspectives (section —resident version) and an assessment of staff perspectives (section —staff version). the results from these steps are then used to determine the level of sense-sensitivity of the environment. an initial pretest of the senses screening tool was conducted in two (n= ) ltc facilities in the usa. the purpose of the pretest was to determine preliminary content validity of the tool, to determine ease of adminis- tration, to identify any items that were not worded clearly, to determine adequacy of instructions and to determine the general flow of the tool. as part of the initial pretest, three (n= ) focus groups were conducted in each of the two (n= ) facilities. participants were recruited from each of the ltc facilities for the pretest. the first being located in new paltz, new york, and the second located in collingswood, new jersey. focus groups were organ- ised according to roles, with the first group consisting of administrators (including directors of care and facility managers), the second group consisting of care staff and support staff (including registered nurses, allied health professionals, personal support workers, activity organ- isers, catering providers, cleaning staff and maintenance workers) and the third group consisting of residents and families. a total of participants contributed to the focus groups. no inclusion or exclusion criteria were applied for participation in the focus groups and involvement was voluntary. participants worked in a variety of roles within the ltc facility and had worked in these roles for varying lengths of time, which enhanced the data collected during the pretest. participants were given the opportunity to review the tool in advance of the focus groups to allow them time to examine the document. the pretesting identified item wording and terminology that needed further clarifica- tion as well as items that should have been included in the tool, adequacy of instructions and the general flow of the tool. participants were also asked to consider the logistics of completing the tool, including the time to perform the audit and who should be involved in the process. based on feedback obtained in the pretest, revisions were made to the tool. the content and proposed scoring for each section of the tool are listed in table . proposed scoring in sections and , each sensory item is scored in a binary fashion with ‘yes’ answers being assigned a value of ‘ ’ and ‘no’ answers being assigned a value of ‘ ’. in sections and , each sensory item is scored using a likert scale ranging from to . for individual item scoring, we will calculate the mean for each item. for domain scoring (if feasible), we propose to calculate the ‘mean of means’ for each domain score. the proposed scoring will be further o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n ju n e . d o w n lo a d e d fro m http://bmjopen.bmj.com/ backman c, squires je. bmj open ; :e . doi: . /bmjopen- - open access ta b le s e n se s sc re e n in g t o o l s a m p le c o n te n t a n d p ro p o se d s c o ri n g d o m a in s s e c ti o n : w a lk th ro u g h o f th e e n vi ro n m e n t— it e m s s e c ti o n : a s s e s s m e n t o f o rg a n is a ti o n a l p o lic ie s , p ro c e d u re s a n d p ro to c o ls — it e m s s c o ri n g f o r s e c ti o n s a n d s e c ti o n : a s s e s s m e n t o f re s id e n t p e rs p e c ti ve s — it e m s s e c ti o n : a s s e s s m e n t o f s ta ff p e rs p e c ti ve s — it e m s s c a lin g f o r s e c ti o n a n d h e a ri n g q u ie t a re a s se p a ra te d f ro m n o is e e vi d e n c e o f st a ff t ra in in g a b o u t h e a ri n g im p a ir m e n ts ( ) n o ( ) y e s a p p ro p ri a te n o is e le ve l d u ri n g a c ti vi ti e s a p p ro p ri a te n o is e le ve l d u ri n g a c ti vi ti e s f re q u e n c y sc a le : ( ) n e ve r ( ) ( ) r a re ly ( – t im e s) ( ) o c c a si o n a lly ( – t im e s) ( ) f re q u e n tl y ( – t im e s) ( ) a lm o st a lw a ys ( t im e s o r m o re ) h o u se ke e p in g s c h e d u le p o lic ie s re la te d t o h e a ri n g ( so u n d , n o is e , h e a ri n g im p a ir m e n t, c o m m u n ic a ti o n w it h im p a ir e d r e si d e n ts ) ( ) n o ( ) y e s a p p ro p ri a te n o is e le ve l th ro u g h o u t th e d a y a p p ro p ri a te n o is e le ve l th ro u g h o u t th e d a y f re q u e n c y sc a le : ( ) n e ve r ( ) ( ) r a re ly ( – t im e s) ( ) o c c a si o n a lly ( – t im e s) ( ) f re q u e n tl y ( – t im e s) ( ) a lm o st a lw a ys ( t im e s o r m o re ) v is io n r e fle c ti ve m a te ri a ls e a sy t o c le a n ( y/ n ) s ta ff t ra in in g a b o u t vi su a l i m p a ir m e n ts ( y/ n ) ( ) n o ( ) y e s l ig h ti n g le ve ls a p p ro p ri a te l ig h ti n g le ve ls a p p ro p ri a te l ik e rt a g re e m e n t: ( ) s tr o n g ly d is a g re e ( ) d is a g re e ( ) n e it h e r a g re e o r d is a g re e ( ) a g re e ( ) s tr o n g ly a g re e m in im u m g la re fl o o ri n g ( y/ n ) p o lic ie s re la te d t o v is io n ( lig h ti n g , vi su a l im p a ir m e n ts , c o m m u n ic a ti o n w it h v is u a l im p a ir e d r e si d e n ts ) (y /n ) ( ) n o ( ) y e s t id in e ss t id in e ss f re q u e n c y sc a le : ( ) n e ve r ( ) ( ) r a re ly ( – t im e s) ( ) o c c a si o n a lly ( – t im e s) ( ) f re q u e n tl y ( – t im e s) ( ) a lm o st a lw a ys ( t im e s o r m o re ) s m e ll c o n ta in m e n t o f o d o u rs ( y/ n ) s ta ff t ra in in g r e g a rd in g o d o u r c o n tr o l ( y/ n ) ( ) n o ( ) y e s p o si ti ve s m e lls in t h e e n vi ro n m e n t p o si ti ve s m e lls in t h e e n vi ro n m e n t l ik e rt a g re e m e n t: ( ) s tr o n g ly d is a g re e ( ) d is a g re e ( ) n e it h e r a g re e o r d is a g re e ( ) a g re e ( ) s tr o n g ly a g re e m a n a g e m e n t o f u n p le a sa n t o d o u rs ( y/ n ) p o lic ie s re la te d t o m a n a g e m e n t o f o d o u rs (c le a n in g p ro d u c ts , h o u se ke e p in g , so ile d li n e n s a n d o th e r it e m , g a rb a g e d is p o sa l) (y /n ) ( ) n o ( ) y e s h a n d lin g o f n e g a ti ve o d o u rs h a n d lin g o f n e g a ti ve o d o u rs l ik e rt a g re e m e n t: ( ) s tr o n g ly d is a g re e ( ) d is a g re e ( ) n e it h e r a g re e o r d is a g re e ( ) a g re e ( ) s tr o n g ly a g re e to u c h s e n so ry r o o m s a va ila b le ( y/ n ) s ta ff t ra in in g r e g a rd in g u se o f to u c h ( y/ n ) ( ) n o ( ) y e s a p p ro p ri a te u se o f to u c h th e ra p e u ti c a lly ( -p o in t sc a le ) a p p ro p ri a te u se o f to u c h th e ra p e u ti c a lly ( -p o in t sc a le ) l ik e rt a g re e m e n t: ( ) s tr o n g ly d is a g re e ( ) d is a g re e ( ) n e it h e r a g re e o r d is a g re e ( ) a g re e ( ) s tr o n g ly a g re e ta c ti le e xp e ri e n c e s a va ila b le (y /n ) p o lic ie s re la te d t o t o u c h ( u se o f se n so ry r o o m s) (y /n ) ( ) n o ( ) y e s f e e lin g s a b o u t to u c h u se ( -p o in t sc a le ) f e e lin g s a b o u t to u c h u se ( -p o in t sc a le ) l ik e rt a g re e m e n t: ( ) s tr o n g ly d is a g re e ( ) d is a g re e ( ) n e it h e r a g re e o r d is a g re e ( ) a g re e ( ) s tr o n g ly a g re e c o n ti n u e d o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n ju n e . d o w n lo a d e d fro m http://bmjopen.bmj.com/ backman c, squires je. bmj open ; :e . doi: . /bmjopen- - open access refined based on the psychometric findings (ie, factor analysis, item total) from this proposed study. methods beginning in march , we will conduct psychometric testing of the senses screening tool in three phases based on the standards for educational and psycholog- ical testing framework. – in phase i, we will assess the content validity of all sections of the tool (sections – ). in phase ii, we will assess response process validity (sections – ). in phase iii, we will evaluate acceptability, and inter-rater reliability (sections – ), and we will eval- uate acceptability, internal structure validity and internal consistency reliability (sections – ). resident and public involvement residents were not involved in the development of the protocol. phase i: content validity content validity refers to the degree to which the items on the tool represent the content of interest. – inter- national content experts from ltc will be invited to eval- uate the senses screening tool for relevance, clarity and missing items through an online survey. settings and participants we will seek international representation from key experts (n= ) comprising the following: ( ) administra- tors, directors of nursing, facilities, dietary services and researchers; ( ) residents including advisors on resident and family councils and ( ) staff working in ltc for > years. it is recommended to have a minimum of five experts for content validity testing. a list of experts obtained from existing contacts and from an internet search of international relevant organ- isations will be compiled including, but not limited to the global ageing network, the international longevity centre global and the who department of ageing and life-course. participants will be invited by email to partic- ipate and will provide implied consent by completing and submitting the online survey. procedures the experts will be asked through the online survey to evaluate and comment on the relevance of each item of the senses screening tool in relation to their experiences of sense-sensitivity in ltc. specifically, experts will be asked to rate the relevance of each item on a likert scale: (not relevant); (item needs some revision); (relevant but needs minor revision); and (very relevant) as well as provide an explanation for their decision. experts will also be able to add their suggestions on any missing items. data analysis each item rating on the tool will be averaged. we will also calculate the scale-content validity index for each d o m a in s s e c ti o n : w a lk th ro u g h o f th e e n vi ro n m e n t— it e m s s e c ti o n : a s s e s s m e n t o f o rg a n is a ti o n a l p o lic ie s , p ro c e d u re s a n d p ro to c o ls — it e m s s c o ri n g f o r s e c ti o n s a n d s e c ti o n : a s s e s s m e n t o f re s id e n t p e rs p e c ti ve s — it e m s s e c ti o n : a s s e s s m e n t o f s ta ff p e rs p e c ti ve s — it e m s s c a lin g f o r s e c ti o n a n d ta st e v a ri e ty o f h e rb s a n d s p ic e s u se d t o s ti m u la te a p p e ti te (y /n ) s ta ff t ra in in g t o im p ro ve t a st e e xp e ri e n c e ( y/ n ) ( ) n o ( ) y e s f o o d t a st e s g re a t r e si d e n t e n jo ym e n t o f fo o d l ik e rt a g re e m e n t: ( ) s tr o n g ly d is a g re e ( ) d is a g re e ( ) n e it h e r a g re e o r d is a g re e ( ) a g re e ( ) s tr o n g ly a g re e k it c h e n o r se rv in g a re a k e p t o p e n t o a llo w r e si d e n ts t o sm e ll fo o d a n d h e lp s ti m u la te a p p e ti te ( y/ n ) p o lic ie s re la te d t o t a st e ( re si d e n ts ' fo o d p re fe re n c e s, n e e d s, c u lt u ra l c h o ic e s, o ra l h e a lt h ) (y /n ) ( ) n o ( ) y e s d e n ta l/ o ra l c a re n e e d s a re m e t d e n ta l/ o ra l c a re n e e d s a re m e t f re q u e n c y sc a le : ( ) n e ve r ( ) ( ) r a re ly ( – t im e s) ( ) o c c a si o n a lly ( – t im e s) ( ) f re q u e n tl y ( – t im e s) ( ) a lm o st a lw a ys ( t im e s o r m o re ) ta b le c o n ti n u e d o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n ju n e . d o w n lo a d e d fro m http://bmjopen.bmj.com/ backman c, squires je. bmj open ; :e . doi: . /bmjopen- - open access domain. based on the feedback from the experts, we will revise the tool as necessary, prior to phase ii. phase ii: response process validity response process validity involves verifying the fit between each question on the tool and the responses provided by the participants. – we will conduct think-aloud sessions in an iterative fashion to obtain verbal feedback from participants on the proposed workflow and their experi- ences with the senses screening tool. this approach will aid in understanding whether participants are inter- preting the tool the way it was intended, which helps to ensure that participants interpret and respond to survey items in the manner intended by the researchers. settings and participants we will conduct two to three rounds of think-aloud sessions with ltc facilities in ottawa, canada using a convenience sample. participants will consist of auditors/ designated leads from the ltc communities (n= - ) for sections and , residents (n= - ) for section and staff (n= - ) for section . we will recruit participants through our primary contact in each of the ltc facilities. the inclusion criteria will include: ( ) auditors: administrators, directors of nursing, facilities and dietary services who work full-time or part-time at one of the facilities; ( ) resi- dents including advisors on resident and family councils and ( ) staff working in ltc for > years. participants will need to be fluent in english. the research assistant will provide information about the study and obtain informed consent from the potential participants. procedures participants will be invited to participate in – min individual audio-recorded think-aloud sessions, which consists of going through the tool while explaining his or her interpretation of each question on the tool. we will make revisions following the first round of think- aloud sessions, and proceed to the second and/or third round in an iterative manner until no further changes are required. data analysis the think-aloud sessions will be recorded and transcribed verbatim. following each round, two researchers will independently analyse the transcripts using content anal- ysis to provide a comprehensive and accurate descriptive summary of the participants’ perspectives. discrepan- cies will be reviewed and resolved by a third researcher. findings from the content analysis will then be used to revise the tool between each round and for the field testing. phase iii: additional psychometric testing we will conduct field testing to collect evidence on: ( ) acceptability which refers to the ease of use of the tool (sections – ); ( ) inter-rater reliability which refers to the likelihood that an audit conducted by two individuals will produce the same results (sections and ); ( ) internal consistency reliability which refers to the correlation between the items that make up the overall score for that domain – (sections and ) and ( ) internal structure validity which examines the relationships between groups of items – (sections and ). settings and participants approximately ltc communities will be invited by email to participate. we will select ltc communities of different sizes (small < beds, medium ( – beds) and large > beds), which provide hours nursing care with the help of our international experts. from each of these ltc communities, we will recruit approximately two auditors (n= ) for sections and , two residents (n= ) for section and two staff (n= ) for section . for psychometric testing studies, it is recommended that approximately – participants be recruited per item on the tool with a minimum of participants for best results. for this phase, the inclusion criteria will be the same as in phase ii with the addition of participants being able to access the tool electronically through a weblink. partici- pants in each ltc community will be approached by the ltc administrator or delegate, and those who express interest in participating will be contacted by the research assistant to who will provide further information about the study and obtain informed consent. procedures for sections and of the senses screening tool, a training manual and a set of training slides will be created and distributed to all study sites. the training will consist of viewing the training slides as well as a guided discus- sion on individual questions and response categories. all auditors will be trained prior to the start of data collec- tion. two auditors will independently and concurrently complete the tool in each ltc facility. for sections (residents) and (staff), residents and staff will be provided with the weblink to complete their respective survey online. all data will be collected using survey software (surveymonkey, san mateo, california, usa, http://www. surveymonkey. com). we will seek insti- tutional review board approval at each site (if applicable). data analysis descriptive statistics (ie, frequency, mean, sd, maximum, minimum and mode) will be used. for acceptability, we will examine the frequency of missing data. we will also assess the time it takes to complete each component of the tool. – for any missing data, we will also follow-up directly with the auditors to gain more insight into why items were not completed. for reliability, we will use the following tests to examine inter-rater reliability for categorical items: ( ) percentage of agreement and ( ) weighted kappa. to assess internal consistency reliability, we will use the following coefficients, or estimates of between-score correlation: ( ) cron- bach’s α for randomly equivalent measures, ( ) guttman o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n ju n e . d o w n lo a d e d fro m http://www.surveymonkey.com http://bmjopen.bmj.com/ backman c, squires je. bmj open ; :e . doi: . /bmjopen- - open access split-half for parallel measures and ( ) spearman-brown for any changes in the number of items on the tool. internal consistency coefficients can range from to . a coefficient of . is acceptable for newly developed scales such as the present tool under study. for internal structure validity, we will conduct an explor- atory assessment rather than confirmatory in nature since this will be the first field assessment of the senses screening tool. therefore, to examine the under- lying dimensional structure of the multi-item domains contained in the tool, we will conduct: ( ) item to total correlations, ( ) item-total statistics and ( ) principal component analysis (pca). any missing values will be treated as such with no substitution or imputation. from the item to total correlations, any item that correlates with its scale (domain) score below . will be discussed and revised. from the item-total statistics, items that, if removed, cause a substantial change in the domain’s cronbach’s α score will also be discussed and flagged for potential revision. for the pca, a varimax rotation with kaiser normalisation will used to enhance its interpret- ability. factors (domains) will be identified using the stan- dard . eigenvalue cut-off rule and visualisation of scree plots. items with factor loadings ≥ . will be retained. items that cross load (ie, factor coefficients ≥ . on two or more factors) will be flagged for discussion and possible revision. ethics and dissemination ethical approval was obtained from the university of ottawa research ethics board. findings will be dissem- inated through a peer-reviewed manuscript, through a dedicated website, through presentations in ltc commu- nities and through presentations at research conferences. discussion this paper presents the protocol for the psychometric testing of the newly developed senses screening tool. the psychometric assessment of the senses screening tool will help to ensure that it provides valid and reliable research findings regarding the sense-sensitivity of ltc facilities. the use of this tool will provide key informa- tion about the practices, or lack of practices that exist related to the five senses. the findings from the audits will highlight gaps in the sense-sensitive environment of ltc settings and will guide organisations to improve their sense-sensitivity. further research on the effects of the five senses on quality of life is needed. during our literature review, we found no other tools that measure the senses environmental constructs, making it impossible to evaluate the tool on the basis of its ‘relation(s) to other variables’, as this metric is aimed at comparing the current senses screening tool against a similar tool which has demonstrated reliable and valid results. also, very few items on our tool are supported by randomised controlled trials and therefore most items are based on untested empirical evidence. further testing of these items are needed. we anticipate that this tool will be useful as a stand-alone tool as well as in conjunction with other environmental assessments. furthermore, this screening tool is meant to provide a general measure of the sense-sensitivity in the environ- ment, and may not consider every resident’s individual preferences in what they consider a stimulating environ- ment. however, ltc communities can chose to admin- ister the resident and staff sections of the tool to all or to a large sample of their residents and staff to obtain the overall perspectives on the sense-sensitivity of the envi- ronment. additional qualitative information may also need to be gathered before any significant changes are made to the environment. agitated people or people with advanced dementia may be better served in a peaceful environment with fewer stimuli. the resident and staff sections of the tool allow the possibility to gather data from all residents and all staff in the home in order to capture the different perspectives and needs for that particular ltc community. contributors cb and js were both major contributor in the study conceptualisation and writing the manuscript. both the authors read and approved the final manuscript. funding preliminary work was previously funded by a research partnership between sodexo quality of life services and the university of ottawa life research institute. the development and testing of the tool described in this protocol is supported in part by the bruyère centre for learning, research and innovation (clri) in long-term care. disclaimer bruyère clri was not involved in the design of the study and in writing the protocol manuscript. competing interests none declared. ethics approval ethical approval was obtained from the university of ottawa research ethics board. provenance and peer review not commissioned; externally peer reviewed. open access this is an open access article distributed in accordance with the creative commons attribution non commercial (cc by-nc . ) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. see: http:// creativecommons. org/ licenses/ by- nc/ . /. references . world health organization, world health organization. who global estimates on prevalence of hearing loss. geneva: world health organization, . . world health organization. visual impairment and blindness [internet]. http://www. who. int/ mediacentre/ factsheets/ fs / en/ (cited jul ). . lundy-ekman l. the somatosensory system. neuroscience: fundamentals for rehabilitation. , : , – . . fillit hm, rockwood k, young jb. brocklehurst’s textbook of geriatric medicine and gerontology e-book. elsevier health sciences, . . elf m, nordin s, wijk h, et al. a systematic review of the psychometric properties of instruments for assessing the quality of the physical environment in healthcare. j adv nurs ; : – . . rantz mj, aud ma, zwygart-stauffacher m, et al. field testing, refinement, and psychometric evaluation of a new measure of quality of care for assisted living. j nurs meas ; : – . . sloane pd, mitchell cm, weisman g, et al. the therapeutic environment screening survey for nursing homes (tess-nh): an observational instrument for assessing the physical environment of o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n ju n e . d o w n lo a d e d fro m http://creativecommons.org/licenses/by-nc/ . / http://www.who.int/mediacentre/factsheets/fs /en/ http://dx.doi.org/ . /jan. http://dx.doi.org/ . / - . . . http://bmjopen.bmj.com/ backman c, squires je. bmj open ; :e . doi: . /bmjopen- - open access institutional settings for persons with dementia. j gerontol b psychol sci soc sci ; :s –s . . fleming r. an environmental audit tool suitable for use in homelike facilities for people with dementia. australas j ageing ; : – . . chaudhury h, keller h, pfisterer k, et al. development of a physical environmental observational tool for dining environments in long- term care settings. gerontologist ; :e –e . . lawton mp, nahemow l. ecology and the aging process. in: eisdorfer c, lawton mp, eds. psychology of adult development and aging. washington, dc: american psychological association, : – . . lawton mp, moss m, fulcomer m, et al. a research and service oriented multilevel assessment instrument. j gerontol ; : – . . backman c, crick m, cho-young d, et al. what is the impact of sensory practices on the quality of life of long-term care residents? a mixed-methods systematic review protocol. syst rev ; : . . american educational research association, american psychological association, national council on measurement in education, standards for educational and psychological testing, american educational research association. washington, dc, usa, . . squires je, estabrooks ca, o'rourke hm, et al. a systematic review of the psychometric properties of self-report research utilization measures used in healthcare implement sci. ; : . . streiner dl, norman gr, cairney j. health measurement scales: a practical guide to their development and use. usa: oxford university press, . . waltz cf, strickland o, lenz e. measurement in nursing and health research. new york, usa: springer, . . squires je, hayduk l, hutchinson am, et al. a protocol for advanced psychometric assessment of surveys. nurs res pract ; . . kalisch bj, lee h, salas e. the development and testing of the nursing teamwork survey. nurs res ; : – . . yaghmale f. content validity and its estimation. j med educ ; : – . . ericsson k, simon h. protocol analysis: verbal reports as data. cambridge: mit press, . . mcintosh mj, morse jm. situating and constructing diversity in semi-structured interviews. glob qual nurs res ; : . . de winter jcf, dodou d, wieringa pa. exploratory factor analysis with small sample sizes with small sample sizes. multivariate behav res ; : – . . pearson rh, mundform dj. recommended sample size for conducting exploratory factor analysis on dichotomous data. j mod appl stat methods ; : – . . waltz cf, strickland o, lenz e. measurement in nursing and health research. new york, usa: springer, . . nunnally j, bernstein i. psychometric theory. mcgraw-hill, new york, ny, usa, . . thompson b. exploratory and confirmatory factor analysis: understanding concepts and applications. washington, dc: american psychological association, . o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n ju n e . d o w n lo a d e d fro m http://dx.doi.org/ . /geronb/ . .s http://dx.doi.org/ . /geronb/ . .s http://dx.doi.org/ . /j. - . . .x http://dx.doi.org/ . /geront/gnw http://dx.doi.org/ . /geronj/ . . http://dx.doi.org/ . /s - - - http://dx.doi.org/ . / / http://dx.doi.org/ . /nnr. b e c bd http://dx.doi.org/ . / http://dx.doi.org/ . /jmasm/ http://dx.doi.org/ . /jmasm/ http://bmjopen.bmj.com/ 	development and psychometric testing of the senses screening tool for long-term care: a study protocol 	abstract 	background 	development of the senses screening tool 	proposed scoring 	methods 	resident and public involvement 	phase i: content validity 	settings and participants 	procedures 	data analysis 	phase ii: response process validity 	settings and participants 	procedures 	data analysis 	phase iii: additional psychometric testing 	settings and participants 	procedures 	data analysis 	ethics and dissemination 	discussion 	references untitled effect of single layer centrifugation using androcoll-e-large on the sperm quality parameters of cooled-stored donkey semen doses i. ortiz , j. dorado , l. ramírez , j. m. morrell , d. acha , m. urbano , m. j. gálvez , j. j. carrasco , v. gómez-arrones , r. calero-carretero and m. hidalgo † animal reproduction group, department of animal medicine and surgery, university of cordoba, cordoba, spain; department of clinical sciences, swedish university of agricultural sciences (slu), box , se- , uppsala, sweden; equine center for assisted reproduction services, censyra-extremadura government, badajoz, spain (received july ; accepted october ) the aim of this study was to determine the effect of single layer centrifugation (slc) using androcoll-e-large on donkey sperm quality parameters after h of cool-storage. ejaculates were collected from andalusian donkeys and then cooled at °c. slc was carried out after h of cool-storage using androcoll-e-large. in the first experiment, all sperm parameters assessed (total and progressive sperm motility, viability, sperm morphology and sperm kinematics vcl, vsl, vap, lin, str, wob, alh and bcf) were statistically compared between semen samples processed or not with androcoll-e-large. significant differences ( p < . ) were found between slc-selected and unselected semen samples for all parameters assessed, obtaining better results after slc. in the second experiment, semen samples were classified in two groups according to their sperm progressive motility (pm) before slc. then, the increments obtained in semen quality parameters after slc were compared between groups. no significant differences were found between groups, indicating that slc improved the sperm quality parameters of entire set of semen samples processed with independence to their original pm. in conclusion, slc with androcoll-e-large can be used in donkeys, increasing the sperm quality of cooled-stored donkey semen doses after h of cool storage. keywords: single layer centrifugation, donkey semen, sperm cooling, androcoll-e-large implications andalusian donkey has lost its traditional role, which has resulted in the inclusion of this breed in the un food and agricultural organization endangered species list. nowa- days, the importance of donkey is increasing again and it is essential that the jackasses with desirable genetic features have as good sperm quality as possible. sperm selection by single layer centrifugation (slc) through silica colloids has shown to improve the sperm quality in other animal species. recently, androcoll-e-large has been developed as a colloid suitable for processing large volumes of semen; however, there are no studies that substantiate the potentially bene- ficial effects of slc on donkey semen doses. introduction the donkey’s relationship with human populations is well- documented (rossel et al., ). the earliest domesticated donkey bones identified archeologically date to to bc. thenceforth, donkey has been used as a valuable pack animal. nonetheless, in the last century, in industrialized countries donkeys are losing their traditional role and the number of animals is decreasing rapidly. for example, the number of animals from the spanish donkey breeds (andalusian, balear, catalonian, encartaciones, majorera and zamorano-leonés) has decreased dramatically during recent years. as a result, all of them have been included in the un food and agricultural organization (fao) list of domestic animals to be conserved (fao, dad-is http://dad. fao.org/). in , the andalusian donkey population was individuals with only breeding males. nowadays, the role of these preserved animals is changing. in this sense, donkeys are used in the production of hypoallergenic milk, as † present address: department of animal medicine and surgery, faculty of veterinary sciences, university of cordoba, campus de rabanales (edif. hospital clínico veterinario), ctra. madrid-cádiz, km , , córdoba, spain. e-mail: mhidalgo@uco.es animal, page of © the animal consortium doi: . /s animal http://dad.fao.org/ http://dad.fao.org/ mailto:mhidalgo@uco.es pet therapy for human beings to treat several diseases such alzheimer and as draught animals in those areas in which the use of machines is banned. all this has increased the interest in donkey reproduction. artificial insemination (ai) with cooled-stored semen doses is considered to be one of the most important assisted reproductive technique to increase the number of individuals of many species, in order to improve gene distribution and reduce inbreeding. suboptimal pregnancy rates ( %) after ai using cooled donkey sperm was obtained in a previous study (vidament et al., ). it may result from breeding with low quality or not adequately processed for shipment semen. the quality of sperm samples is crucial when cooled-stored semen is used for ai. it is documented that the semen cooling process causes several changes in mammal spermatozoa known as a whole as ‘cold shock’ (watson, ). it is particularly focused on changes in sperm membranes (peña et al., ); however, this negative effect alters cellular metabolism and organelles, decreases motility and induces irregularities in the sperm motility pattern (sieme et al., ). as a consequence, sperm quality decreases during the cooling process and so do pregnancy rates (varner et al., ). in order to increase the sperm quality of semen samples, a number of sperm selection techniques have been developed (morrell, ). recently, single layer centrifugation (slc) using androcolltm (slu, uppsala, sweden) has been success- fully used for sperm selection in different animal species (morrell et al., e; thys et al., ; chatdarong et al., ). in this slc technique, spermatozoa are centrifuged through a column (single layer) of silane-coated silica colloid in a species-specific formulation. the formulation for stallions is androcoll-e (johannisson et al., ) and has been recently commercialized by minitüb gmbh (tiefenbach, germany). androcoll-etm has been used to select robust spermatozoa in terms of motile and morphologically normal sperm, with intact membranes and good chromatin integrity (morrell et al., c). on the basis of all this sperm parameters to perform the sperm quality analysis, androcoll-e has improved the quality of fresh (morrell et al., a), frozen (macias garcia et al., a; macias garcia et al., b; hoogewijs et al., ) and cooled-stored (morrell et al., d; bergqvist et al., ) stallion sperm samples with a shorter preparation time and less complicated process than the conventional density gradient centrifugation (morrell et al., b). how- ever, a specific formulation for donkey semen has not been developed yet. moreover, this procedure was developed to process small volumes of semen, which could be useful for example, to increase the sperm quality of frozen-thawed stallion semen samples. however, this technique is unsuitable to prepare cool semen doses for equine ai, where large volumes of semen are required. in order to solve this problem, recently a new presentation of androcoll-e has been devel- oped for large volumes of stallion semen: androcoll-e-large. using this new formulation, up to to ml of semen can be processed easily and quickly. sperm quality parameters, such as sperm motility, morphology and chromatin integrity are also improved in slc-selected stallion semen samples using androcoll-e-large (morrell et al., a). however, to our knowledge, only preliminary results of the use of slc to improve sperm motility in cooled donkey semen samples have been published by our research group (ortiz et al., ). despite common belief, the transfer of knowledge and procedures from horses to donkeys often achieves poor results (contri et al., b); so additional studies should be performed to evaluate if slc previously used with great success in stallion semen (morrell et al., b) is suitable for donkey semen samples as well. thus, the aim of this study was to determine if the sperm quality parameters of cooled-stored donkey semen samples can be improved after slc using androcoll-e-large. material and methods animals four healthy, mature, andalusian donkeys, aged from to , were used as semen donors. one of the jackasses was owned by ‘donkey’s house foundation’ (rute, córdoba, spain) and was housed in individual paddocks placed at the veterinary teaching hospital (vth) of the university of córdoba (spain). the feeding consisted of alfalfa hay and water ad libitum. the other three donkeys were housed at the equine center for assisted reproduction services (censyra) in badajoz (spain), where they usually live, and they were fed with a mixture of grasses hay. semen collection semen was collected using a missouri artificial vagina with an in-line gel filter (minitüb) in the presence of a jenny in natural or induced estrus to stimulate copulatory activity. three to four ejaculates per animal were collected twice a week obtaining a total number of ejaculates. total and progressive sperm motility was evaluated from fresh semen by casa. gel free volume (ml) was measured in a collector. sperm concentration (× spermatozoa/ml) was assessed with a sperm photometer (spermacue®; minitüb). semen processing immediately after collection, an aliquot of raw semen was extended with inra (imv, l’aigle, france) at °c until a final concentration of × sperm/ml . extended semen was maintained at room temperature (~ °c) for min in a ml corning tube. semen samples were slowly cooled ( . °c/min) for h in an equitainer at °c. after that, ml of each semen sample were loaded in syringes previously cooled at °c in a fridge. syringes were then placed in a styrofoam box at °c (minitüb) previously loaded with two cold packs. cooled-stored semen doses were shipped to the animal reproduction laboratory if the ejaculates were collected at censyra or cooled and stored following the same methodology if semen was collected at the vth. all semen samples were evaluated after h of cool storage at °c in a shipping box for the following sperm quality parameters. ortiz, dorado, ramírez, morrell, acha, urbano, gálvez, carrasco, gómez-arrones, calero-carretero and hidalgo computer-assisted sperm motility analysis sperm motility was objectively evaluated using the sperm class analyzer (sca v. . . ; microptic s.l., barcelona, spain). this system consists of an optical phase-contrast microscope (eclipse i; nikon, tokyo, japan), a warm plate at °c (ok - , osaka, digifred sl, barcelona, spain) and a high-speed digital camera (a fc, baslertm ag, ahrensburg, germany), which captures a total number of consecutive digitalized frames in s per captured field (image-capture rate, one photograph every ms and a pc (intel inside®, pentium ®, intel labs, barcelona, spain) to analyze and save data. casa settings were as follows: cell size from to µm ; connectivity ; progressive spermatozoa > % of the straightness coefficient (str). an aliquot of each semen sample was extended with inra (imv technologies, l’aigle, france) to a final concentration of × sperm/ml and then incubated at °c for min. after that, μl of each diluted semen sample were placed in a mackler counting chamber (sefi-medical instruments ltd., haifa, israel). three drops, with two randomly microscopic fields per drop, were analyzed in each semen sample. the trajectory of each individual sperm was determined by the sca software obtaining casa sperm kinematic parameters: total motility (tm), progressive motility (pm), sperm curvi- linear velocity (vcl, μm/s), sperm linear velocity (vsl, μm/s), average path velocity (vap, μm/s), linear coefficient (lin, vsl/vcl × ), straightness coefficient (str, vsl/vap × ), wobble coefficient (wob, vap/vcl × ), amplitude of lateral head displacement (alh, μm) and beat cross frequency (bcf, hz) were assessed. sperm morphology sperm morphology was performed by visual examination on slides stained with diff-quick® (baxter dade ag , düdingen, switzerland) as described previously (hidalgo et al., ). at least sperm were evaluated from each semen sample and the percentage of normal and abnormal forms was recorded. sperm viability sperm viability was assessed using a supravital stain (cortes- gutierrez et al., ) based on the red/green emission of two fluorescent dyes: acridine orange and propidium iodide, respectively (duo-vital kit; halotech dna sl, madrid, spain). at least sperm were counted, considering green sperma- tozoa as ‘live sperm’, and red or red-green as ‘dead sperm’. slc with androcoll-e-large before slc, both cooled-stored semen samples and colloid were allowed to equilibrate at room temperature (about °c) for min to avoid temperature fluctuations. fifteen milliliters of cooled semen were carefully layered on top of ml androcoll-e-large located in ml corning tubes, taking care not to disrupt the interface. the suspension was centrifuged at × g for min without brake (eppendorf, rh; eppendorf ag, hamburg, germany). the super- natant (semen extender, seminal plasma and colloid) was removed and the sperm pellet recovered and transferred to a clean tube containing inra . according to the protocol described by morrell et al. ( a). concentration of the sperm pellets was measured using the sca system. after that, semen samples were adjusted to a final concentration of million sperm/ml and then sperm motility, morphology and viability were analyzed as described above. the yield of selected spermatozoa was calculated according to the following formula: yield ¼ ðnumber of spermatozoa in sperm pellet= number of spermatozoa in initial loadÞ ´ experimental design experiment . effect of sperm selection using androcoll-e- large in cooled-stored donkey semen doses for h at °c. two aliquots of each semen sample were taken. one of them was immediately evaluated for sperm quality parameters following the methodology described above. the other one was subjected to slc with androcoll-e-large as described previously and then evaluated. the results of the sperm quality parameters assessed in uncentrifuged semen samples (unselected) were compared with those obtained after slc centrifugation with androcoll-e-large (slc-selected). experiment . relationship between pm of uncentrifuged samples and improvement of sperm parameters in slc- selected samples. semen samples were divided into two groups according to the original sperm pm of unselected samples (group : pm ⩽ . %; group : pm ⩾ . %). increment obtained in each semen quality parameter after slc-selection was compared between groups. statistical analysis data analyses were performed using spss v . for mac os x (ibm, spss statistics, armonk, ny, usa) and sas v . for windows (sas institute inc, cary, nc, usa). analysis of the data was carried out using a general linear model (glm), with animals, treatments and ejaculates as fixed effects. differences between treatments in each animal were also assessed using glm, with the fixed effects being ejaculates and treatment. a two-step cluster procedure was performed to classify the cooled semen samples according to their initial progressive sperm motility (before slc-treatment). comparisons between groups were performed using a one-way anova. normality of the data distributions and variance homogeneity were checked by the kolmogorov–smirnov and cochran tests, respectively. values were expressed as mean and root mean square error (rmse). statistical significance was set at p < . . results sperm parameters from all the ejaculates assessed in fresh semen aliquots were between the ranges considered as physiologic when evaluating donkey sperm (table ). the sperm yield (%) of total sperm obtained after slc with androcoll-e-large was . . cool-stored donkey semen doses processed by slc comparison of sperm quality parameters between uncentrifuged and slc-selected samples after h of cool storage all sperm parameters assessed (motility, viability and mor- phology) were higher in the slc-selected samples compared with uncentrifuged controls (table ). mean total sperm motility was significantly higher (p< . ) in slc-selected samples in comparison to unselected samples ( . % v. . %), which means an increment of . %. more- over, sperm pm was also significantly (p< . ) higher in slc- selected samples ( . % v. . %). this parameter increased . % when compared with uncentrifuged samples (table ). the statistical analysis performed to assess viability showed significantly increased values (p < . ) in the live sperm percentage from slc-selected aliquots ( . % v. . %). in this case slc-selected samples had an increment of . % in viability values (table ). normal sperm morphology in slc-selected samples was also significantly higher (p < . ) than uncentrifuged semen ( . % v. . %), increasing by . the percentage of nor- mal forms (table ). most of the sperm kinematics parameters assessed (vcl, vsl, vap, lin, str, wob and bcf) was significantly improved (p < . ) in the slc samples compared with the uncentrifuged controls (table ). relationship between pm of uncentrifuged samples and improvement of sperm parameters in slc-selected samples significant differences (p < . ) were found between the progressive sperm motility of the two groups obtained (table ); however, no significant differences in the improve- ment of sperm quality parameters after slc were seen between groups (table ). discussion the objective of the present study was to determine if sperm quality parameters from cooled donkey semen doses stored for up to h could be improved after slc using androcoll-e- large, which has been used successfully in previous studies to process large volumes of stallion semen (morrell et al., a). according to the results obtained in this study, slc using androcoll-e-large significantly improved total and pm, vitality and normal sperm morphology in donkey sperm doses after h of cool-storage. kinematic sperm para- meters were also improved. these results are in agreement with previous studies which supported slc using androcoll-e-large is an effective method to select motile sperm in stallions (morrell et al., , d; johannisson et al., ). preliminary results of the use of slc in donkey semen samples have been published by our research group (ortiz et al., ); however, to our knowledge, this is the first full research article in which the effect of colloid centrifugation is tested in cooled-stored donkey sperm doses. total and pm are traditionally considered as essential indicators to evaluate the quality of a sperm semen sample (love, ). in this study, both parameters were lower in the unselected samples than those obtained in previous table sperm parameters immediately after collection and yield when slc was carried out after storage of extended semen at °c for h from all animals donkey (n = ) donkey (n = ) donkey (n = ) donkey (n = ) mean values (n = ) fresh semen parameters mean s.d. mean s.d. mean s.d. mean s.d. mean s.d. gel-free volume (ml) . . . . . . . . . . sperm concentration (× per ml) . . . . . . . . . . total sperm count (× ) . . . . . . . . . . tm (%) . . . . . . . . . . pm (%) . . . . . . . . . . yield after slc (%) . . . . . . . . . . n = number of ejaculates; tm = total motility; pm = progressive motility; slc = single layer centrifugation. values are expressed as mean and s.d. (standard deviation). table parameters of semen quality for uncentrifuged (n = ) and slc-selected (n = ) donkey sperm samples stored at °c for h treatments parameters uncentrifuged slc-selected rmse statistics (p-value) tm (%) . . . < . pm (%) . . . < . live (%) . . . < . normal (%) . . . < . slc = single layer centrifugation; rmse = root mean square error; tm = total motility; pm = progressive motility; live = live sperm; normal = normal forms. values are expressed as mean and rmse. ortiz, dorado, ramírez, morrell, acha, urbano, gálvez, carrasco, gómez-arrones, calero-carretero and hidalgo studies (mello et al., ; rota et al., ; contri et al., a), however, total and pm were significantly enhanced when comparing unselected with slc-selected samples. these results agree with studies performed with cooled stallion semen doses (morrell et al., a). in this way, the capacity of slc with androcoll-e-large to increase total and progressive stallion sperm motility after h of cool storage compared to uncentrifuged semen samples has also been shown. sperm viability represents the integrity of sperm plasma membrane. it is supposed that all motile sperm should be alive; however, these parameters are not always related (love et al., ). our results showed a lower percentage table kinematic parameters for uncentrifuged (n = ) and slc-selected (n = ) donkey sperm samples when slc was carried out after storage of extended semen at °c for h treatments parameters uncentrifuged slc-selected rmse statistics (p-value) vcl (µm/s) . . . < . vsl (µm/s) . . . < . vap (µm/s) . . . < . lin (%) . . . < . str (%) . . . < . wob (%) . . . < . alh (µm) . . . < . bcf (hz) . . . < . slc = single layer centrifugation; rmse = root mean square error; vcl = curvilinear velocity; vsl = linear velocity; vap = average path velocity; lin = linear coefficient; str = straightness coefficient; wob = wobble coefficient; alh = mean lateral head displacement; bcf = frequency of head displacement. values are expressed as mean and rmse. table groups obtained according to the original sperm progressive motility of cooled-stored semen samples before slc (uncentrifuged samples) progressive sperm motility before slc (%) group n mean range g . a – . g . b . – n = number of semen samples; slc = single layer centrifugation. a-bindicate significant differences (p < . ). table comparison of the increment of sperm parameters of cooled-stored semen after slc between semen samples grouped on the basis of their original progressive motility semen sample group according to original pm increment of sperm parameters after slc group (pm = . ) group (pm = . ) rmse tm-i (%) . . . pm-i (%) . . . l-i (%) . . . nf-i (%) . . . yield (%) . . . slc = single layer centrifugation; rmse = root mean square error; tm = total motility; pm = progressive motility; l = live sperm; nf = normal forms no significant differences were found between groups (p > . ). values are expressed as mean and rmse. tm-i (tm increment) = (tm% slc-selected)–(tm% uncentrifuged). pm-i (pm increment) = (pm% slc-selected)–(pm% uncentrifuged). l-i (l increment) = (l% slc-selected)–(l% uncentrifuged). nf-i (nf increment) = (nf% slc-selected)–(nf% uncentrifuged). cool-stored donkey semen doses processed by slc of live sperm than motile sperm. this fact is explained in a previous study by cortes-gutierrez et al. ( ) in which they discovered that some live sperm remained unstained with duo-vital® staining, becoming ‘invisible’ to the evaluator and the final percentage of live sperm is lower than the true value. nevertheless, sperm viability percentage was significantly higher in the samples centrifuged with androcoll-e-large. another study has also reported that slc using this colloid improves cooled stallion semen doses (morrell et al., b). this is quite an interesting finding bearing in mind that the temperature drop triggers several changes in the spermatozoa known as cold shock (watson, ), mainly in the acrosomal and plasma membrane decreasing sperm quality because of death or shortening of sperm life (petrunkina et al., ; peña et al., ). consequently, pregnancy rates after insemination of cool semen decrease (heckenbichler et al., ) implying this last motive a good reason to consider colloid centrifugation as an option in order to improve sperm viability of cooled semen samples. sperm morphology was also improved after slc, being the proportion of normal forms higher in slc-selected samples in comparison to uncentrifuged cooled-stored semen doses. these results correspond to those from other studies in stallions (morrell et al., a). percentage of normal forms has been related to pregnancy rates (morrell et al., ). this could suggest that samples processed with androcoll-e- large which presented better morphology would be more fertile than unprocessed ones. mean sperm yield obtained was . % being the range in stallions from % to %. although the recovery rate is small compared with those obtained in stallions (morrell et al., c, a), these differences can be explained by this colloid formulation, which has been previously used with stallions and not with donkeys. this fact can be explained attending to previous studies performed with horses (morrell et al., b), where it is described that volume and concentration must be adjusted to a specific colloid. if this requirement is not fulfilled significant differ- ences in the yield are obtained. further studies are needed in order to develop more accurate protocols to use in donkeys (testing different sperm concentrations, volumes of sperm and colloid, centrifugation times and densities) or a specific colloid for donkey sperm to increase the yield obtained. on the other hand, previous studies have calculated ai donkey semen doses based on sperm concentration excluding other parameters. these authors concluded that a sperm dose of millions of total sperm in ml was followed with acceptable pregnancy rates (vidament et al., ). this number of sperm per dose could be decreased if sperm parameters like motility, viability or morphology are taken into consideration. in our study, the mean yield obtained was ~ million of sperm in each semen sample processed ( ml sperm × million sperm per ml × recovery rate/ ). however, donkey sperm concentration of raw semen is much larger than horse sperm concentration (miró et al., ). if we scaled-up the yield to the number of sperm in the whole ejaculate, we could obtain around million of slc-selected sperm. it makes possible to prepare more than cooled doses for ai with million of sperm per dose. sperm velocities, mainly vcl and vsl are the most important kinematic parameters related to potential fertility (olds-clarke, ). results obtained in this study revealed a highly significant (p < . ) enhancement of both para- meters after slc. in the same way, the remaining kinematic parameters assessed were also significantly higher (p< . ) after slc except for alh, which was significantly smaller. irregular trajectories are mainly induced by two causes: ( ) low linearity (lin= vsl/vcl× ) or ( ) a high degree of lateral deviation of the head (alh), both related to very low vsl and very high values of vap (mortimer, ). in our study, vsl and vap increases in slc-selected samples accompanied with lower mean values of alh. this implies that slc excludes sperm with an irregular trajectory. since differences between treatments in each animal have shown different results, individual factors should be considered when processing samples by slc. previous studies performed in stallions reported an improvement of all sperm kinematics parameters in frozen-thawed semen, obtaining similar results to fresh semen evaluation prior freezing (macias garcia et al., a). to conclude, slc with androcoll-e-large improves both general and kinematic motility parameters in donkey sperm samples, indicating better sperm motility. in experiment , androcoll-e-large improved every sperm quality parameter regardless of the pm of the original sample, and there were no differences in the yield between groups. this result suggests that cooled semen samples are suitable for processing with androcoll-e-large. furthermore, even semen samples with higher progressive sperm motility after cool storage are capable of being improved using androcoll-e-large. however, as mean values for the incre- ment of different sperm quality parameters and yield were different, maybe a larger number of ejaculates and animals could show significant differences between groups. in short, this general improvement of sperm quality in donkey cooled semen doses based on the enhancement of sperm parameters could be related to selection of the most robust ‘fertile spermatozoa’ from the entire sperm population. nevertheless, we could think that a number of some good spermatozoa that still remained some potential fertility ability may be lost during the slc process. conse- quently, it could also affect fertility after slc. however, it is important to highlight the fact that slc not only selected the robust ‘fertile’ sperm but also removed dead and immotile sperm. removing dead or immotile sperm from a semen sample means that sources of reactive oxygen species are also removed and that should improve fertility of ai doses (morrell et al., ). since previous studies have obtained moderate pregnancy rates ( %) in jennies inseminated with unselected cooled semen (vidament et al., ), slc could be used to try to increase this percentage. the relation- ship between slc-selected semen and fertility has been reported before in stallions (morrell et al., b). however, ortiz, dorado, ramírez, morrell, acha, urbano, gálvez, carrasco, gómez-arrones, calero-carretero and hidalgo no experiences have been performed in donkeys. once slc has been shown to be an effective method to improve sperm quality parameters of cooled-stored donkey semen doses in vitro, further studies are needed to relate sperm quality enhancement of donkey semen doses to pregnancy rates after ai. in conclusion, slc with androcoll-e-large improved total and pm, viability, morphology as well as most of sperm kinematics parameters assessed over the entire set of donkey semen doses processed after h of cool storage. acknowledgments the authors are indebted to fundación casa del burro (rute, cordoba, spain) for supplying the animals. this work has been partially supported by grant rz - - - (instituto nacional de investigación y tecnología agraria y alimentaria, ministerio de ciencia e innovación, spain) and by the founda- tion for equine research, stockholm, sweden (grant for jmm). references bergqvist as, johannisson a, bäckgren l, dalin am, rodriguez-martinez h and morrell jm . single layer centrifugation of stallion spermatozoa through androcoll™-e does not adversely affect their capacitation-like status, as mea- sured by ctc staining. reproduction in domestic animals , – . chatdarong k, thuwanut p and morrell jm . single-layer centrifugation through colloid selects improved quality of epididymal cat sperm. theriogenol- ogy , – . contri a, de amicis i, veronesi mc, faustini m, robbe d and carluccio a a. efficiency of different extenders on cooled semen collected during long and short day length seasons in martina franca donkey. animal reproduction science , – . contri a, de amicis i, veronesi mc, faustini m, robbe d and carluccio a b. efficiency of different extenders on cooled semen collected during long and short day length seasons in martina franca donkey. animal reproduction science , – . cortes-gutierrez ei, crespo f, gosalvez a, davila-rodriguez mi, lopez- fernandez c and gosalvez j . dna fragmentation in frozen sperm of equus asinus: zamorano-leones, a breed at risk of extinction. theriogenology , – . heckenbichler s, deichsel k, peters p and aurich c . quality and fertility of cooled-shipped stallion semen at the time of insemination. theriogenology , – . hidalgo m, rodríguez i and dorado j . influence of staining and sampling procedures on goat sperm morphometry using the sperm class analyzer. theriogenology , – . hoogewijs m, morrell j, van soom a, govaere j, johannisson a, piepers s, de schauwer c, de kruif a and de vliegher s . sperm selection using single layer centrifugation prior to cryopreservation can increase thawed sperm quality in stallions. equine veterinary journal , – . johannisson a, morrell jm, thorén j, jönsson m, dalin am and rodriguez- martinez h . colloidal centrifugation with androcoll-e™ prolongs stallion sperm motility, viability and chromatin integrity. animal reproduction science , – . love cc . relationship between sperm motility, morphology and the fertility of stallions. theriogenology , – . love cc, thompson ja, brinsko sp, rigby sl, blanchard tl, lowry vk and varner dd . relationship between stallion sperm motility and viability as detected by two fluorescence staining techniques using flow cytometry. theriogenology , – . macias garcia b, gonzalez fernandez l, morrell jm, ortega ferrusola c, tapia ja, rodriguez martinez h and pena fj asingle-layer centrifugation through colloid positively modifies the sperm subpopulation structure of frozen-thawed stallion spermatozoa. reproduction in domestic animals , – . macias garcia b, morrell jm, ortega-ferrusola c, gonzalez-fernandez l, tapia ja, rodriguez-martinez h and pena fj b. centrifugation on a single layer of colloid selects improved quality spermatozoa from frozen-thawed stallion semen. animal reproduction science , – . mello slv, henry m, souza mc and oliveira smp . effect of split ejaculation and seminal extenders on longevity of donkey semen preserved at °c. arquivo brasileiro de medicina veterinaria e zootecnia , – . miró j, taberner e, rivera m, peña a, medrano a, rigau t and peñalba a . effects of dilution and centrifugation on the survival of spermatozoa and the structure of motile sperm cell subpopulations in refrigerated catalonian donkey semen. theriogenology , – . morrell j, johannisson a, dalin am and rodriguez-martinez h a. morphology and chromatin integrity of stallion spermatozoa prepared by den- sity gradient and single layer centrifugation through silica colloids. reproduction in domestic animals , – . morrell jm . stallion sperm selection: past, present, and future trends. journal of equine veterinary 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single layer centrifugation. theriogenology , – . morrell jm, mari g, kútvölgyi g, meurling s, mislei b, iacono e and rodriguez- martinez h b. pregnancies following artificial insemination with sperma- tozoa from problem stallion ejaculates processed by single layer centrifugation with androcoll-e. reproduction in domestic animals , – . morrell jm, johannisson a, dalin am, hammar l, sandebert t and rodriguez- martinez h . sperm morphology and chromatin integrity in swedish warmblood stallions and their relationship to pregnancy rates. acta veterinaria scandinavica , – . morrell jm, winblad c, georgakas a, stuhtmann g, humblot p and johannisson a . reactive oxygen species in stallion semen can be affected by season and colloid centrifugation. animal reproduction science , – . mortimer st . casa – practical aspects. journal of andrology , – . olds-clarke p . sperm from tw / + mice: capacitation is normal, but hyperactivation is premature and nonhyperactivated sperm are slow. develop- 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proceedings of the national academy of sciences , – . rota a, magelli c, panzani d and camillo f . effect of extender, cen- trifugation and removal of seminal plasma on cooled-preserved amiata donkey spermatozoa. theriogenology , – . cool-stored donkey semen doses processed by slc sieme h, harrison rap and petrunkina am . cryobiological determinants of frozen semen quality, with special reference to stallion. animal reproduction science , – . thys m, vandaele l, morrell j, mestach j, van soom a, hoogewijs m and rodriguez-martinez h . in vitro fertilizing capacity of frozen-thawed bull spermatozoa selected by single-layer (glycidoxypropyltrimethoxysilane) silane-coated silica colloidal centrifugation. reproduction in domestic animals , – . varner dd, blanchard tl, meyers pj and meyers sa . fertilizing capacity of equine spermatozoa stored for hours at or °c. theriogenology , – . vidament m, vincent p, martin fx, magistrini m and blesbois e . differences in ability of jennies and mares to conceive with cooled and frozen semen containing glycerol or not. animal reproduction science , – . watson pf . the causes of reduced fertility with cryopreserved semen. animal reproduction science – , – . ortiz, dorado, ramírez, morrell, acha, urbano, gálvez, carrasco, gómez-arrones, calero-carretero and hidalgo 	effect of single layer centrifugation using androcoll-e-large on the sperm quality parameters of cooled-stored donkey semen�doses 	implications 	introduction 	material and methods 	animals 	semen collection 	semen processing 	computer-assisted sperm motility analysis 	sperm morphology 	sperm viability 	slc with androcoll-e-large 	experimental design 	experiment 	experiment 	statistical analysis 	results 	comparison of sperm quality parameters between uncentrifuged and slc-selected samples after &#x ;h of cool storage 	relationship between pm of uncentrifuged samples and improvement of sperm parameters in slc-selected samples 	discussion 	table sperm parameters immediately after collection and yield when slc was carried out after storage of extended semen at &#x b ;c for &#x ;h from all animals 	table parameters of semen quality for uncentrifuged (n�&#x d;� ) and slc-selected (n�&#x d;� ) donkey sperm samples stored at &#x b ;c for &#x ;h 	table kinematic parameters for uncentrifuged (n�&#x d;� ) and slc-selected (n�&#x d;� ) donkey sperm samples when slc was carried out after storage of extended semen at &#x b ;c for &#x ;h 	table groups obtained according to the original sperm progressive motility of cooled-stored semen samples before slc (uncentrifuged samples) 	table comparison of the increment of sperm parameters of cooled-stored semen after slc between semen samples grouped on the basis of their original progressive motility 	acknowledgments 	acknowledgements 	references microsoft word - s&f_ .doc s&f_n.  _     lucia francesca menna    la relazione uomo‐animale.   il termometro dei tempi che corrono e la zooterapia    . paradigmi   . chimeriche creature?   . rigore scientifico e dignità terapeutica      . paradigmi  in  questi  ultimi  anni,  a  mio  parere,  stiamo  assistendo  a  una  profonda  trasformazione  culturale  che  si  rende  manifesta  anche  in  medicina,  osservabile  dall’influenza  esercitata  da  altri paradigmi (rapporto istat).  come tutti sappiamo, il paradigma  è  l’insieme  di  assunzioni  teoriche  e  sperimentali,  che  influenzano  gli  scienziati  e  indirizzano il lavoro scientifico  verso  una  determinata  direzione.  secondo l’epistemologo kuhn, ogni  periodo  storico  è  caratterizzato  dal  proprio  paradigma  che  consente  così  di  sviluppare  gli  strumenti adatti all’avanzamento della conoscenza. secondo kuhn ,  però, il momento nel quale alle domande che si pone la scienza,  non seguono risposte completamente soddisfatte dalle credenze e i  metodi acquisiti, vuol dire che il paradigma sul quale si poggia  l’indagine  è  in  crisi.  questi  sono  i  periodi  che  precedono  le  grandi rivoluzioni scientifiche e sheldrake nel suo libro i sette    t.  s.  kuhn,  la  struttura  delle  rivoluzioni  scientifiche,  tr.  it.  einaudi,  torino  .  dossier  lucia francesca menna, la relazione uomo‐animale        esperimenti per cambiare il mondo , pone l’attenzione proprio ad  alcuni  quesiti  di  tipo  sia  terapeutico  sia  diagnostico  che  non  possono  essere  spiegati  secondo  il  paradigma  molecolare  che  è  quello  sul  quale  si  base  gran  parte  della  nostra  ricerca  scientifica.  queste  osservazioni  sono  condivise  da  diversi  epistemologi tra i quali si sta facendo strada l’idea che questo è  il  periodo  nel  quale  si  sente  la  necessità  culturale  di  un  superamento della rigida separazione delle discipline per arrivare  a un approccio multidisciplinare . materie come la bioetica o la  zooantropologia  ne  sono  l’espressione.  la  zooantropologia  studia  la  relazione  uomo  animale  in  tutte  le  sue  espressioni  fino  a  quello applicativo del quale la medicina comportamentale e la pet  therapy sono le più conosciute . per quanto riguarda quest’ultima,  diversi  studi  dimostrano  che  nel  momento  in  cui  si  realizza  una  relazione con un animale, si attiverebbero delle strutture della  corteccia cerebrale che determinerebbero lo stato empatico  e con  esso  la  possibilità  di  apertura  e  miglioramento  psicologico.  inoltre numerosi studi antropologici e psicologici confermano che  la  relazione  con  l’animale  attiverebbe  quell’immagine  interiore  che  ognuno  di  noi  porta  con  sé  e  proprio  andando  ad  attivare  quell’immagine archetipica si otterrebbero i risultati sperati di  miglioramento  della  condizione  della  persona .  il  lavoro  con  un  animale,  quindi,  se  eseguito  con  competenza  nell’ottica  terapeutica, non è l’esecuzione di gesti ripetuti e consueti, ma  significa attivare l’affettività e altre dimensioni della capacità  di relazione dell’individuo e il suo svolgimento e la modalità con  cui si compie è estremamente complesso . la società contemporanea    i.  sheldrake,  sette  esperimenti  per  cambiare  il  mondo,  tr.  it.  corbaccio,  milano  .   e. morin, la testa ben fatta, tr. it. cortina, milano  .    bioetica  e  professione  veterinaria,  a  cura  di  g.  ballarini,  quaderni  di  bioetica, macro edizioni, cesena  .   m. iacoboni, m. dapretto, the mirror neuron system and the consequences of  its dysfunction, in «nature reviews neuroscience»,  ,  , pp.  ‐ .   j. hillman, animali del sogno, raffaello cortina, milano  .   r. marchesini, l’identità del cane, perdisa editore, bologna  ; ma si veda  anche id., specchio animale. racconti di ibridazione, castelvecchi, roma  .  s&f_n.  _     è il frutto della sua storia. niente di ciò che abbiamo oggi, che  si tratti di valori, relazioni, stili di vita, o modi di pensare,  è scollegato dal cammino dell’uomo nella storia. dal momento nel  quale,  quindi,  l’uomo  prende  le  distanze  dalla  propria  origine  animale e assume una posizione di predominanza nei confronti delle  altre specie viventi sottomettendoli ai suoi bisogni, si realizza  un  atteggiamento  improntato  alla  negazione  dell’autonoma  dignità  dell’animale. eppure il mondo animale ha continuato a esercitare  nei  confronti  dell’uomo  una  forte  attrattiva,  quasi  che,  nel  profondo, i legami fra i due esseri, l’uomo e l’animale, fossero  rimasti  ben  saldi  tanto  che  persino  nell’era  tecnologica,  dove  l’uomo delega a macchine moltissime delle sue funzioni pensando di  riuscire  a  crearne  una  pienamente  simile  a  se  stesso  (programma  forte dell’intelligenza artificiale), l’uomo non può fare a meno  di  ispirarsi  alla  perfezione  della  natura  per  poter  ricreare  i  propri artefatti.    . chimeriche creature?  dall’osservazione  degli  animali  sono  nate  moltissime  discipline  epistemologiche, artistiche e tecnologiche. l’animale è utile, per  mappare il territorio in base alla sua presenza (pensiamo al tempo  dei sogni degli aborigeni australiani), per strutturare l’ordine  sociale  o  per  raggiungere  stati  alterati  di  coscienza  (nello  sciamanesimo).  secondo  molti  autori  senza  l’osservazione  degli  animali  l’uomo  non  avrebbe  mai  potuto  imparare  a  costruire  macchine volanti o macchine natanti o sommergibili. nel corso dei  millenni  il  rapporto  uomo  animale  è  più  volte  mutato,  spesso  in  conseguenza  del  contesto  culturale  del  momento,  ma  sempre  oscillando  sostanzialmente  tra  due  tendenze  opposte:  il  distanziamento  dall’animalità  e  l’avvicinamento  a  essa .  molto  interessante è l’osservazione delle cosiddette chimere nate dalla  giustapposizione  di  componenti  umane  e  componenti  teromorfiche.   s. tonutti, manuale di zooantropologia, meltemi editore, roma  .  dossier  lucia francesca menna, la relazione uomo‐animale        l’esistenza di figure fantastiche che derivano dall’accoppiamento  tra umani e animali sembra sia dovuta alla necessità dell’uomo di  soddisfare  i  suoi  inconsci  bisogni.  il  simbolo  della  città  di  napoli, la sirena partenope, ne rappresenta un esempio. le chimere  positive, come il centauro, per esempio, rispondono all’esigenza  di  creare  una  singolare  alleanza  contro  le  forze  della  natura:  l’intelligenza  e  l’eloquio  umano,  giustapposte  alla  nobiltà  e  velocità  del  cavallo,  quelle  negative,  invece,come  la  sfinge,  soddisfano il bisogno dell’uomo di vedere puniti misfatti troppo  gravi  per  trovare  un’adeguata  sanzione  se  non  in  un’entità  mostruosa.  l’animale  è  stato  dunque  utilizzato  dall’uomo  come  chiave di lettura nell’interpretazione sia del mondo esterno che  di  quello  interno,  al  fine  di  comprendere  la  complessità  della  natura  e  i  lati  oscuri  dell’animo  umano  stesso.  È  molto  interessante  notare  che  la  fabbrica  inconscia  delle  chimere  si  affianca al lunghissimo processo di domesticazione degli animali.  in  linea  generale,  la  domesticazione  è  considerata  una  forma  di  modificazione  totale  dell’animale  che  è  entrato,  volente  o  dolente, a contatto con l’uomo. quest’influenza risulta evidente  sia  sul  piano  morfologico,  con  la  comparsa  di  nuovi  e  specifici  caratteri  filogenetici,  sia  sul  piano  comportamentale.  oltre  a  determinare nell’animale l’abitudine alla presenza dell’uomo, con  conseguente  perdita  delle  reazioni  di  evitamento  e  di  fuga,  la  domesticazione  ha  comportato  una  serie  di  modificazioni  del  comportamento  animale  per  quanto  riguarda  sia  i  rapporti  tra  animali e i loro simili, che gli adattamenti fisiologici (risposta  agli  stress  ambientali,  orari  etc).  nella  seconda  fase  del  rapporto uomo‐animale, l’uomo diventa “dominus”, padrone di tutte  le  creature,  e  l’animale  è  concepito  come  “utilità”  ossia  produttore di carne, latte, uova, pelle, lana, forza lavoro, etc.  successivamente,  con  la  rivoluzione  scientifica,  l’uomo  occidentale  deliberò  che  la  natura  fosse  un  unico  insieme  di  comportamenti  regolari,  ripetibili  e  controllabili,  e  che  s&f_n.  _     qualsiasi  fenomeno  naturale,  sia  che  esso  appartenesse  al  mondo  inorganico  o  a  quello  organico,  dovesse  essere  interpretato  mediante la matematica, unica lingua a disposizione dell’uomo per  comprendere  la  complessità  del  mondo.  l’omologazione  di  ogni  genere di fenomeno naturale a un’unica entità matematica (mettendo  sullo stesso piano la legge di gravità con l’ululato del lupo) ha  spianato  la  strada  a  cartesio,  onde  poter  giungere  alla  conclusione che gli animali sono nettamente separati dagli esseri  umani  dalla  mancanza  di  anima  razionale  e  immortale .  questa  concezione  è  la  base  fondamentale  per  concepire  l’animale  in  un  rapporto  utilitaristico,  arrivando  fino  all’estremo  della  selezione  artificiale  di  alcuni  suoi  caratteri  produttivi  per  arrivare come obiettivo a un miglioramento delle caratteristiche  maggiormente  utili  alle  necessità  umane.  nonostante  ciò,  anche  nella seconda fase del rapporto uomo‐animale è sempre esistita una  distinzione  fra  gli  animali  allevati  a  scopo  utilitaristico  e  quelli il cui significato nei riguardi dell’uomo era diverso: il  pet  o  animale  da  compagnia.  questa  prima  differenziazione  ha  generato  una  diversa  considerazione  dell’alterità  animale,  portando a estendere all’interno della società occidentale anche  una  consapevolezza  del  valore  intrinseco  del  vivente,  riconoscendogli sia le proprie prerogative specie‐specifiche, sia  la  sua  influenza  sul  percorso  evolutivo  del  genere  umano.  nella  concezione  etica  dell’animale,  il  soggetto  è  considerato  come  essere  senziente,  in  grado  di  avvertire  percezioni  coscienti  di  gioia e di dolore, e di conseguenza riacquistare pienamente la sua  soggettività.  diversi  studiosi  hanno  formulato  teorie  riguardo  alle  motivazioni  che  spingerebbero  l’uomo  a  ricercare  un’interazione con l’animale. tra questi, edward wilson, secondo  il quale l’uomo in generale e il bambino in particolare hanno una  sorta  di  predisposizione  istintiva  che  rende  l’animale    r.  descartes,  discorso  sul  metodo,  in  e.  lojacono  (a  cura  di),  opere  filosofiche di rené descartes, u.t.e.t., torino,  , vol. i, pp.  ‐ .  dossier  lucia francesca menna, la relazione uomo‐animale        interessante ai loro occhi e capace di esercitare un particolare  fascino  su  di  loro.  secondo  l’autore,  la  specie  umana  è  caratterizzata da un’innata e naturale tendenza, detta biofilia, a  mostrare interesse e gradimento verso una figura animale piuttosto  che qualsiasi altra cosa .    . rigore scientifico e dignità terapeutica  l’antropologo paul shepard ha compiuto uno studio sulla capacità  dell’uomo  di  vedere  la  forma  animale  in  un  insieme  di  segni:  secondo i suoi risultati le persone scoprono il soggetto nascosto  oltre  il  %  delle  volte  se  si  tratta  di  un  animale,  mentre  in  altri  casi  non  arriverebbero  al  % .  tracciare  un  profilo  del  ruolo ricoperto dall’alterità non‐umana in ogni momento della vita  dell’individuo, significa come prima cosa ammettere che l’animale  abbia un posto preciso nell’ontologia umana: i bambini che nascono  nelle  società  miste  fatte  di  uomini  e  di  cani,  per  esempio,  imparano  non  solo  dagli  umani  ma  anche  dai  cani  stessi,  questa  socializzazione è di fatto un’ibridazione culturale che non solo  trasferisce contenuti non presenti nell’umano ma altresì allarga  la  dimensione  umana  favorendo  la  sua  permeabilità  ai  prestiti  esterni.  partendo  proprio  da  questa  concezione  che  si  deve  affrontare  il  lavoro  di  terapia  con  l’aiuto  di  un  animale  per  dargli rigore scientifico e dignità terapeutica. perché lavorare  in  un  setting  terapeutico  nel  quale  l’animale  sia  parte  attiva,  utile  referente  di  ausilio  diagnostico  in  quanto  esperto  del  linguaggio non verbale così importante nelle malattie degenerative  del sistema cognitivo,significa effettuare un evidente cambiamento  epistemologico, significa rompere un tabù. lavorare con un animale  cooterapeuta,  infatti,  vuol  dire  aprirsi  a  un  approccio  della  conoscenza  diverso  dal  metodo  intellettualista  e  dalla  nozione  corrente che la logica è la sola misura adeguata e il solo metodo   e. o. wilson, sociobiology and human natur, harvard university  .   p. shepard, thinking animal: animals and development of human intelligence,  viking press, new york,  .  s&f_n.  _     per  misurare  e  comprendere  l’esistenza .  significa  avanzare  ipotesi  che  ci  sia  un’altra  intelligenza  da  prendere  in  considerazione da un punto di vista clinico e diagnostico  e che  l’aiuto  della  relazione  terapeutica  mediata  da  un  animale  ci  permetta  di  contattarla  con  più  facilità,  che  il  lavoro  con  un  animale  consenta  di  valutare  la  corporalità  come  funzione  fondamentale e imprescindibile della conoscenza . uscire, quindi,  dall’improvvisazione  e  dallo  spontaneismo  quando  si  esegue  un  lavoro  terapeutico  con  un  animale,  considerarlo  a  tutti  gli  effetti  una  prestazione  sanitaria ,  significa  rappresentare  quella necessità epistemologica di evoluzione del paradigma che si  avvisa nei nostri tempi per avanzare verso una visione sistemica  della conoscenza e della formazione culturale.                      lucia  francesca  menna  insegna  igiene  e  sanità  pubblica  veterinaria  presso  la  facoltà di medicina veterinaria dell’università degli studi di napoli federico  ii      j.  hillman,  l'anima  del  mondo  e  il  pensiero  del  cuore,  tr.  it.  adelphi,  milano  ;  si  veda  anche  l.  f.  menna,  il  veterinario  zoo  terapeuta  e  il  cambio  di  paradigma,    giorni,  roma  ;  ma  si  veda  anche  h.  bergson,  l’evoluzione creatrice, tr. it. raffaello cortina, milano  .   d. golemann, l’intelligenza emotiva, tr. it. bur, milano  .    m.  onfray,  la  potenza  di  esistere,  tr.  it.  tea,  milano  ;  ma  si  veda  anche id., la scultura del sé, tr. it. fazi, roma  .   l. f. menna et al., evaluation of social relationship in elderly by animal‐ assisted activity (aaa), in «international psychogeriatrics»,  ,  ,  , pp.  ‐ .  wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ edinburgh research explorer achieving the impossible citation for published version: wiseman, r & watt, c , 'achieving the impossible: a review of magic-based interventions and their effects on wellbeing', peerj. https://doi.org/ . /peerj. digital object identifier (doi): . /peerj. link: link to publication record in edinburgh research explorer document version: publisher's pdf, also known as version of record published in: peerj general rights copyright for the publications made accessible via the edinburgh research explorer is retained by the author(s) and / or other copyright owners and it is a condition of accessing these publications that users recognise and abide by the legal requirements associated with these rights. take down policy the university of edinburgh has made every reasonable effort to ensure that edinburgh research explorer content complies with uk legislation. if you believe that the public display of this file breaches copyright please contact openaccess@ed.ac.uk providing details, and we will remove access to the work immediately and investigate your claim. download date: . apr. https://doi.org/ . /peerj. https://doi.org/ . /peerj. https://www.research.ed.ac.uk/portal/en/publications/achieving-the-impossible(bbabd - d e- cb -bfe - b f f efa ).html submitted october accepted november published december corresponding author richard wiseman, r.wiseman@herts.ac.uk, profrwiseman@gmail.com academic editor bob patton additional information and declarations can be found on page doi . /peerj. copyright wiseman and watt distributed under creative commons cc-by . open access achieving the impossible: a review of magic-based interventions and their effects on wellbeing richard wiseman and caroline watt psychology, university of hertfordshire, hatfield, united kingdom psychology, university of edinburgh, edinburgh, united kingdom abstract research has demonstrated that involvement with mainstream performing arts, such as music and dance, can boost wellbeing. this article extends this work by reviewing little-known research on whether learning magic tricks can have an equally beneficial effect. we first present an historic overview of several magic-based interventions created by magicians, psychologists and occupational therapists. we then identify the potential benefits of such interventions, and review studies that have attempted to systematically assess these interventions. the studies have mostly revealed beneficial outcomes, but much of the work is of poor methodological quality (involving small numbers of participants and no control group), and has tended to focus on clinical populations. finally, we present guidelines for future research in the area, emphasizing the need for more systematic and better-controlled studies. subjects psychiatry and psychology, public health keywords psychology, occupational therapy, magic tricks, health, intervention, performing arts introduction research has shown that involvement with the performing arts can help boost psychological and physical wellbeing (for reviews see fraser, bungay & munn-giddings, ; noice, noice & kramer, ; stickley et al., ). this work has employed a variety of research designs (including randomised controlled trials, case studies, and observational designs) and tackled a wide variety of topics (including mental health issues, dementia and parkinson’s disease, chronic illnesses, head injuries, substance abuse, and physical and developmental disabilities). although most of this work has focused on mainstream forms of performance (such as acting, music, and dance), a small amount of the research has examined the role that conjuring can play within both health-care and educational settings. this work has involved two main approaches. first, some of the research has examined the benefits associated with clinicians and educators performing magic tricks. for example, within health-care settings, medics and therapists have described performing magic tricks to help reinforce positive health messages (falkner, ; lustig, ), reduce patient anxiety (zhang et al., ), establish rapport during psychotherapy (moskowitz, ; howard, ; spruill & poidevant, ; gilroy, ; gilroy, ), deliver life lessons (bowman, ; bowman, ), and gain the co- operation of patients (bow, ; schwartz, ; peretz & gluck, ). similarly, within a how to cite this article wiseman r, watt c. . achieving the impossible: a review of magic-based interventions and their effects on wellbeing. peerj :e http://doi.org/ . /peerj. https://peerj.com mailto:r.wiseman@herts.ac.uk mailto:profrwiseman@gmail.com https://peerj.com/academic-boards/editors/ https://peerj.com/academic-boards/editors/ http://dx.doi.org/ . /peerj. http://creativecommons.org/licenses/by/ . / http://creativecommons.org/licenses/by/ . / http://doi.org/ . /peerj. pedagogic context, educators have performed magic tricks to help boost student’s critical thinking skills (mccormack, ; siegelman, ), promote interest in stem topics (papalaskari et al., ; papalaskari et al., ) and communicate specific concepts in physics (ruiz, ), chemistry (haub, ), organisational behaviour (krell & dobson, ), computer science (curzon & mcowan, ), statistics (lesser & glickman, ), mathematics (simonson & holm, ; yew, ) and psychology (solomon, ). a second strand of magic-based research has taken a more participatory approach and focused on the potential benefits associated with learning how to perform conjuring tricks. this work has tended to appear in specialist academic journals and publications produced by the magic community. this paper reviews this little-known literature, presenting an historical overview of the area, identifying the claimed benefits of magic-based interventions, and reviewing work that has assessed these claims. search strategy literature relating to learning magic tricks and wellbeing was identified by (i) entering the search terms ‘magic therapy’ and ‘magical therapy’ into databases from both academia and the magic community (including google scholar, ovid medline, scopus and ‘ask alexander’ from the conjuring arts research centre), (ii) drawing on existing knowledge and personal contacts within academia and magic (namely david britland, will houstoun, sadie broome, alan mccormack, richard kaufman and kevin spencer), (iii) searching key books and articles that explore the relationship between magic, psychology and science (including lamont & wiseman, ; macknik, martinez-conde & blakeslee, ; rensink & kuhn, ; lam, lam & chawla, ), (iv) examining the material referenced in located papers and books, and (v) contacting the authors of this material for additional information. all searches were undertaken in september . historical overview magic-based interventions have been developed within both health and educational contexts. each area will be discussed in turn. health early work exploring the possible relationship between wellbeing and performing magic tricks appeared during the first world war. in , conjurer and illustrator charles folkard wrote ‘tricks for the trenches and wards’, a book that encouraged convalescing soldiers to perform magic tricks as a form of entertainment and rehabilitation (draklof, ). at the start of the book folkard described being inspired by a nurse commenting on the therapeutic value of magic, and in the remainder of the text presented a series of tricks, most of which can be performed with the hands alone. the magic literature contains a well-known anecdote from this era supporting the use of magic as occupational therapy. ‘cardini’, one of the world’s most highly skilled magicians, initially learned how to manipulate playing cards whilst recuperating from shell shock after being wounded in the battle of the somme. later reflecting on his time in hospital, cardini remarked: ‘of course they [medics] didn’t know so much about occupational therapy back in the first wiseman and watt ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. world war, but manipulating my fingers with cards amounted to just that...’ (beaumont, ). during the second world war, magician and psychiatrist douglas kelley published a lengthy article describing how he had successfully used magic tricks as a form of occupational therapy at the new york state psychiatric institute and hospital (kelley, ). an experienced and well-regarded magician, kelley discussed why magic tricks are especially well suited to this type of work, noting, for instance, that they often only require a small amount of practice, can be easily adapted to suit the patient and require very little financial outlay. since then, several health practitioners have reported used magic-based interventions in their work. in addition, the following larger-scale initiatives have been launched. in the late s, a small group of american magicians established the ‘national committee for therapy through magic’, and encouraged performers to team up with medics and to teach magic tricks to their patients (lopez, ). the initiative involved several well-known medical institutions, including the mayo clinic (minnesota), the bellevue hospital (new york), and the variety children’s hospital (miami). although the program received considerable coverage in the magical literature (see, e.g., sibley, ; christopher, ), it’s unclear how many magicians were actively involved and the initiative seems to have disappeared by the early s. in , internationally renowned magician david copperfield worked with occupational therapist julie dejean to create ‘project magic’. this program aimed to teach patients magic tricks to enhance their wellbeing, motivation, and self-esteem. a key part of this approach involved reducing the frustration frequently experienced by those who have to carry out highly repetitive rehabilitation exercises. magicians and therapists interested in participating could obtain ‘the project magic handbook’, which described a large number of magic tricks, and presented information on how to implement a successful therapeutic program (kaufman, ). in , the american occupational therapy association formally supported the initiative, and project magic has been adopted by many practitioners. in , american magician kevin spencer helped to create a similar program after himself being involved in a serious car accident and suffering head and spinal cord injuries (spencer, ). spencer’s ‘healing of magic’ initiative involved magicians teaching simple magic tricks to promote patients’ physical and psychological wellbeing. emulating ‘project magic’, spencer produced a manual and dvd containing appropriate magic tricks and instructional material (spencer & spencer, ). in , magician michael walton created a program entitled ‘open heart magic’ to teach magic tricks to children in hospital (hart & walton, ). the work aims to boost self-esteem and provide a sense of mastery. unlike many of the other magic-based programs, all potential performers are required to participate in a rigorous training program. although the initiative runs in various locations, much of the activity takes places in chicago, where over ‘hospital magicians’ visit hospitals and perform to over , children each year. wiseman and watt ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. in , american medical student and former professional magician david elkin founded ‘magicaid’ (elkin & pravder, ). this initiative involves training health practitioners to deliver one-on-one ‘magic therapy’ for paediatric patients and their families, and aims to help reduce the stress that children often experience in hospital. magicaid is run by both medics and magicians (including the well-known magician justin willman) and has been successfully implemented at several medical facilities. in canada, the educational and therapeutic program ‘my magic hands’ is run by magician julie eng (executive director of the magic-based arts organization, magicana). this program has been running for several years and has involved magicians working with occupational therapists to help children with a range of disabilities. other aspects of the program have included work with at-risk children and those attending community centers in economically disadvantaged areas. most recently, a team of british occupational therapists have partnered with magicians to create ‘breathe’—a program designed to help those suffering from childhood hemiplegia (breathe, ). children with hemiplegia often find it difficult to continually carry out the repetitive exercises needed to help combat their condition. breathe aims to tackle this issue by turning these exercises into magic tricks. during the initiative, children typically participate in around h of intensive therapy and top-up workshops. in addition, they can perform in a show attended by their friends and families. educational magic-based interventions within a pedagogic context, one of the earliest recorded references dates back to the turn of the last century and is associated with a seminal book on victorian conjuring entitled ‘modern magic’ (hoffman, ). written by lawyer and magician angelo lewis (using the pseudonym ‘professor hoffman’), modern magic aimed to teach readers how to perform magic, and was arguably the first book to provide a highly detailed description of the apparatus and methods used by magicians. in the book was published in russia and included a foreword by russian educator and scientist julian simashko (fedorov, ). in keeping with the then popular notion of ‘rational recreation’ (the use of leisure time for self-improvement and self-enrichment) simashko noted: ‘it doesn’t matter that a magic trick is not normally viewed as serious education, it helps to develop a quick eye and a sharp inquisitive mind. a trick, a puzzle, a logical analysis, or a mathematical theorem—everything is good if leads to this aim.... to perform just one or two magic tricks you’ll have to do some work: to understand the secret of the trick, to complete all necessary preparations, and to practice until your hand becomes more dexterous and flexible. we saw that children successfully overcame those difficulties, they eagerly grasped the problem and did the necessary preparation to achieve their goal, in short they are thinking’. subsequently a handful of magicians and educators have built on this notion, producing books on how to get children to perform magic in the classroom and develop key skills (see, e.g., windley, ; mccormack, ; kett, ). in the late s, therapist sadie broome developed ‘the magic kids’ program for students with behavioral and emotional disorders. broome ( ) and broome ( ) wiseman and watt ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. offered guidelines for making a magic-based intervention effective within a school-based setting, and provided a detailed description of the tricks and illusions used during the show. similarly, bowman authored several books containing tricks that can be easily mastered, and described the potential life lessons that can be gained from each trick (bowman, ; bowman, ; bowman, ). in south africa, ‘the college of magic’ was created by david gore in , and provides a wide range of magic-based training courses for children. the college aims to create a positive and caring environment that helps children to build a range of life skills, along with eight specific ‘star qualities’ (honesty, respect, responsibility, initiative, excellence, empathy, humility and wonder). in , kevin spencer built on his ‘healing of magic’ initiative by launching ‘hocus focus’, an educational curriculum that involves magic-based lesson plans designed to promote students’ motivation and key learning skills, including individuals with learning and emotional challenges (spencer, ). most recently magician michael ammar has launched his ‘discover magic’ initiative in which children are taught tricks designed to develop eight traits including self confidence, creativity, preparation, communication skills, and resilience (johnston, ). potential benefits of magic-based interventions as outlined in the previous section, magicians, medics, educators, psychologists and occupational therapists have described a wide range of benefits that might flow from learning to perform magic tricks. we have created the following chronology-based framework to organise these benefits, outlining the various stages involved in learning, practicing and performing a magic trick. lateral thinking and problem solving the methods used in magic tricks are often surprisingly simple, and frequently involve some form of lateral thinking. over time, magicians learn the general principles involved and can use these to create new tricks. it seems likely that learning magic will encourage creative problem solving and may even help people to find novel solutions to challenges in their own lives. indeed, some writers have suggested that the secrets to magic tricks symbolize optimism because they show how seemingly complicated problems can have remarkably simple solutions. fostering trust when someone is told how a magic trick is achieved they are being trusted with secret information, and it is hoped that they will not tell others the secret to a trick. this process may help people to understand the importance of trust and to foster a spirit of togetherness. storytelling and imagination creating magic effects involves putting together a narrative that is both entertaining, holds onlookers’ attention, and justifies the actions involved in the trick. this is likely to help promote a series of related skills, including imagination, storytelling, and emotional empathy. wiseman and watt ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. practical skills although many magic tricks can be performed with everyday objects, some involve creating objects that are either on display during a performance (known as ‘props’) or those that are hidden from the spectators (known as ‘gimmicks’). the construction of these objects may promote practical building skills and an understanding of how to work with a variety of materials. cognitive skills learning how to perform a magic trick usually requires following a series of instructions and a considerable amount of practice. therefore, learning magic may promote several key cognitive skills, including concentration, preparedness, self-control and memory. motor skills many tricks involve manipulating objects in unusual ways. learning those tricks may help to promote gross and fine motor skills, and eye-hand coordination. in addition, occupational therapy often involves highly repetitive actions; incorporating these movements into a magic trick may make the actions more enjoyable and meaningful. teamwork although people are able to learn tricks on their own, magic is often far from a solidity experience. tricks can be taught in groups, people can work together to build props and stage a show, and magicians are frequently members of magic societies and clubs. so, learning magic may help to develop teamwork skills, including learning to give and receive constructive feedback, identifying individuals’ strengths, and helping to build community. interpersonal communication as with any type of public presentation, the successful performance of a magic trick involves basic acting skills. however, magic brings several additional challenges, including often having to give clear instructions, controlling onlookers’ attention, overcoming possible nervousness caused by having to conceal certain actions, and finding acceptable ways of explaining why one cannot reveal the secret of the trick. therefore, the performances may promote interpersonal skills, emotional regulation, respect, and self-presentation abilities. adaptability and resilience unlike many performances, the presentation of magic often involves considerable flexibility, as the magician adapts the trick to a particular situation or has to deal with an unexpected event. in addition, tricks do occasionally go wrong, or onlookers may correctly guess the secret of the trick. therefore any good performer has to be able to cope with failure. these experiences may help build both adaptability and resilience. self-esteem and confidence performing magic tricks also promotes self-esteem as the performer can do something the audience cannot, and provides a sense of pleasure and mastery from creating an unusual and enjoyable experience for others. wiseman and watt ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. evaluation of benefits of magic-based interventions several researchers have produced anecdotal evidence and case studies to support the claim that learning magic tricks promotes wellbeing (see, for example, stenhouwer, ; frith & walker, ; geens, ; fisher & fisher, ; harte & spencer, ). this section outlines work that has involved a more systematic evaluation of these programs, focusing on both physical and psychological benefits. this work has generally been reported only in specialist academic journals and publications produced by the magic community. physical benefits four studies have assessed whether teaching people magic tricks may help their physical wellbeing. sui & sui ( ) describe a two-year project that involved delivering aspects of the ‘healing is magic’ program within a social services organization in hong kong. thirty staff taught magic to patients diagnosed with a range of serious mental illnesses, including schizophrenia and depression. forty patients completed the ‘purdue pegboard’ (a standard test of manual dexterity and bimanual coordination) before and after participating in the magic-based intervention. the patients showed significant improvements both in the use of their left and right hands, and in their ability to use both hands together. green et al. ( ) carried out research as part of the breathe initiative, assessing the level of hand and arm use among hemiplegic children before and after a two-week course of magic-based therapy. participants completed two questionnaires measuring spontaneous and daily use of their affected hand (‘the assisting hand assessment’ and ‘the children’s hand experience questionnaire’) and a standardized test of their ability to grasp and release items (the jebsen-taylor test of hand function). the children displayed significant improvements on all three measures, although their scores on the assisting hand assessment returned to pre-test levels three months later. as part of the same initiative, weinstein et al. ( ) had hemiplegic children undergo functional brain imaging (fmri) before and after the breathe intervention. the children showed significant increases in the level of activation in the affected hemisphere, and around half of them demonstrated a significant increase in white matter integrity in the corpus callosum and corticospinal tract. additional work by schertz et al. ( ) revealed that children with greater brain damage benefited most from the intervention. psychological benefits ten studies have assessed whether teaching people magic tricks may help their psychological wellbeing. lyons & menolotto ( ) undertook a pilot study in which a magician and two occupational therapists taught magic tricks to seven psychiatric patients with a variety of conditions (including schizophrenia, recurrent paranoid psychosis and bipolar affective disorder). the magic-based intervention consisted of eight -minute, sessions, delivered over a nine-week period. the tricks were chosen from copperfield’s ‘project magic’ and aimed to enhance patients’ social skills. six patients completed a questionnaire about the benefits of learning magic, with the results showing that they found the experience highly sociable, refreshing, pleasant and meaningful. the authors note that the programme helped wiseman and watt ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. lend structure to large amounts of uncommitted time, and that a key part of its success involved discovering strengths rather than emphasising limitations. ezell & klein-ezell ( ) examined whether learning magic tricks helped boost the self-esteem of children with physical and psychological challenges. ten university students taught magic tricks to children with a range of conditions, including learning difficulties, behavioral disorders, and physical disabilities. many of the tricks were selected from ‘project magic’ and the children were given the opportunity to rehearse in front of a mirror and also to perform for younger children. the children’s self-esteem (measured via ‘the student self-concept scale’) was significantly higher after the intervention. kwong ( ) taught magic tricks from the ‘healing of magic’ manual to inpatients on a neuro-rehabilitation ward over several weeks. participants completed pre and post questionnaires designed to measure their quality of life (eq- d), self-esteem (rosenberg self-esteem scale), and mood (rand health survey). scores on the eq- d and self-esteem scale showed non-significant increases, and only one of the sub-scales within the rand health survey was significant (‘energy/fatigue’; p= . ). levin ( ) examined whether a magic-based intervention might boost the self-esteem and positive behavior of severely emotionally disturbed children. nine participants (aged between and ) were taught magic tricks during six, one-hour, weekly sessions. six children completed the rosenberg self-esteem scale pre- and post the intervention. although the authors do not provide statistical data, they report that the children’s scores increased on of the scale items. the group also displayed several behavioral improvements, including a decrease in ‘boundary violations’ (mean of violations per child to per child), and ‘time-outs’ (mean of . – . per child). sui & sui’s ( ) study, described above, also examined whether a magic-based intervention improved patients’ psychological wellbeing. forty patients completed questionnaires designed to measure their happiness and general satisfaction (personal wellbeing index) and self-confidence (chinese general self-efficacy scale). the researchers report significant increases on the personal wellbeing index and on just one item of the general self-efficacy scale (the capability to identify multiple solutions to a problem). patients indicated that their cognitive skills (including memory, concentration and ability to think rationally) had improved, and that the intervention boosted their confidence and acted as a catalyst for conversation. interestingly, the researchers also noted that the patients became more presentable during performance. spencer ( ) conducted a study examiningthe psychological impact of thehocus focus programme in three schools, involving a total of teachers and students (aged between and ). the students were diagnosed with a range of issues, including autism, emotional behavior disorder, learning disability, adhd, and communication difficulties. the teachers completed various observation checklists and surveys, and students completed both surveys and informal interviews. qualitative data indicated that the majority of the students experienced improvements. the teachers reported that the intervention captured and held students’ attention, encouraged active participation, emphasized the importance of following directions, and encouraged students to help one another. the students appeared to show increases in concentration, and memory skills, self-determination and wiseman and watt ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. self- esteem, motivation and participation, leadership and socialization, peer relationships and collaboration. as part of the research surrounding the breathe initiative, hemiplegic children completed a questionnaire-based measure of hopefulness (hope scale) both before and after learning to perform magic tricks (green & farquharson, ). the results showed a large (but non-significant) increase in hopefulness (p= . , -tailed), and comments from parents reflected themes of empowerment and improved confidence. similarly, hines et al. ( ) carried out semi-structured interviews with parents of hemiplegic children who had undertaken the breathe initiative. three main benefits emerged: ‘it’s okay to be me’ (parents believing that their children experienced a strong sense of inclusion and insight), ‘the magic effect’ (valuing the novelty and challenge of performing magic tricks), and ‘i can do it’ (increased self-belief and a willingness to attempt challenging tasks). overall, many parents believed that their children had gained a feeling of mastery, which had then helped them to develop a more autonomous approach to daily activities. bagienski ( ) examined whether performing magic elevated the performer’s mood. around fifty university students were either taught to perform a simple magic trick or given techniques to boost their rapport skills. each day participants performed the trick or used their rapport building techniques, assessed how successful they had been, and rated their positive and negative mood (panas scale). nineteen participants provided enough data to be entered into the analysis. contrary to the hypothesis, the affective states and success rates of participants who had learned the magic trick were not significantly different from those who had been taught rapport building skills. finally, pravder et al. ( ) examined whether a magic-based intervention created by the magicaid initiative helped reduce the psychological discomfort and anxiety of pediatric patients and their caregivers during hospitalization. medical students at stony brook children’s hospital were taught magic tricks, and then taught these tricks to patients aged – years. patient-caregiver pairs were randomly assigned to receive either magic therapy or ‘standard services’ (which included pet therapy, art therapy and music therapy), and self-report anxiety levels were taken pre and post intervention (‘facial image scale’, ‘venham picture test’ and ‘short state-trait anxiety inventory’). compared to participants who received the ‘standard services’, those in the magic-based intervention were significantly less anxious on post-test measures. discussion this paper has presented an overview of the many systematic programs that aim to promote wellbeing by teaching people how to perform magic tricks. these programs have been developed within both a health setting and an educational context, and date back to the turn of the twentieth century. various authors have identified the key benefits that might flow from a magic-based intervention, including a boost in self-esteem, an increased feeling of mastery, and gains in motor skills. some of the work supporting these benefits is anecdotal in nature, and involves either clinicians’ and educators’ first-hand experience wiseman and watt ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. or their descriptions of case-studies. a relatively small amount of work has adopted a more systematic approach to evaluation of the benefits of magic-based interventions. in terms of potential physical benefits, this research has mainly been carried out by those associated with the ’breathe’ initiative, that focuses on helping hemiplegic children. overall this work has reported highly positive findings, suggesting that a magic-based initiative can help boost the children’s motor skills and range of movement. similar work examining the potential psychological benefits of magic-based interventions has assessed a range of factors, including general life-satisfaction, self-esteem and behavioural problems. again, overall positive results have been reported. although promising, there are several reasons to treat the results from both sets of studies with caution. first, with the exception of two studies (bagienski, ; pravder et al., ) these studies have not employed a control group, and so it’s difficult to assess how the outcomes associated with learning magic tricks compare to either doing nothing or other interventions. second, almost all of the studies have involved relatively small numbers of self-selected participants, and so it is unclear whether the findings apply to larger cohorts. third, almost all of the studies have involved participants who are facing physical and psychological challenges, and so it is not yet clear whether magic-based intervention are beneficial to non-clinical populations (again, bagienski ( ) is the only exception, and the null results reported in that study give reason to be cautious). finally, the magic-based intervention employed in the studies differed on many dimensions (including one to one versus group delivery, the duration of the intervention, and the tricks involved) and so it is problematic to assess which parameters are maximally associated with successful outcomes. it is hoped that future researchers will conduct additional work into the efficacy of magic-based interventions. hopefully, this work will build upon the existing research base by the addition of control groups, using larger numbers of participants, exploring whether such interventions are effective for non-clinical populations, and exploring which aspects of the intervention are especially effective. in addition, whereas almost all of the previous work has aimed simply to document the potential impact of interventions, future research could adopt a more theoretical approach and explore why these interventions might be beneficial. this more theory-based work might, for instance, build on existing research suggesting that magic may have the potential to provoke curiosity (subbotsky, ), create a certain form of wonder (lamont, ), and enhance divergent thinking (subbotsky, hysted & jones, ; danek et al., ). a large amount of research has examined the potential therapeutic impact of the performing arts and there are several journals are dedicated to the topic, including the journal of music therapy, the journal of poetry therapy, the american journal of dance therapy, and drama therapy review. in comparison, only a small amount of work has examined the relationship between magic-based interventions and wellbeing. this discrepancy could be due to several factors, including, for instance, performing arts researchers and practitioners tending not to have a background in magic, the naturally secretive nature of magicians, the erroneous notion that magic isn’t an art form, or the idea that performing even basic magic tricks involves considerable manual dexterity. removing these potential barriers may encourage more performing arts researchers and practitioners wiseman and watt ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. to explore magic-based interventions. we believe that this would be highly desirable, in part because magic-based interventions have several practical advantages over other performing arts. for example, most people, including children, find the idea of being able to perform a magic trick an engaging, attractive and interesting proposition. this is especially the case at the moment, due to the success of several fantasy and magic-based books and films, such as ‘harry potter’ and ‘lord of the rings’. second, many entry-level magic tricks can be learned quickly and require relatively modest skills. third, a large number of tricks require inexpensive equipment and so are cost effective. fourth, it is easy to create activities that can be tailored to specific abilities and situations, and can be used in both a one-to-one and small group setting. fifth, magic allows people to practice on their own but also involves social interaction during a performance. finally, magic tricks represent a highly structured form of interaction that can be used in everyday life to break the ice and build rapport with friends and strangers. conclusions the work into the efficacy of magic-based interventions has been reported in specialist academic journals and publications produced by the magic community. this paper aims to bring this literature to a wider audience and to review its findings. the literature suggests that learning to perform magic ticks can help promote both physical and psychological wellbeing. as is often the case in fledgling areas, the work suffers from various methodological issues that make it problematic to draw firm conclusions. in line with the magic-based interventions being reported, it is hoped that future researchers are able to make these problems disappear and, in doing so, discover how magic can help to produce some genuinely remarkable phenomena. acknowledgements we are grateful for help and information supplied by david britland, will houstoun, sadie broome, alan mccormack, richard kaufman and kevin spencer. we would also like to thank our referees for their insightful and helpful comments and suggestions. additional information and declarations funding the authors received no funding for this work. competing interests the authors declare there are no competing interests. author contributions • richard wiseman conceived and designed the experiments, performed the experiments, analyzed the data, contributed reagents/materials/analysis tools, authored or reviewed drafts of the paper, approved the final draft. wiseman and watt ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. • caroline watt analyzed the data, contributed reagents/materials/analysis tools, authored or reviewed drafts of the paper, approved the final draft. data availability the following information was supplied regarding data availability: it is a literature review, and so the study did not generate raw data. references bagienski s. . the magic effects of active constructive responding on positive affect. dissertation completed in fulfilment of the msc psychology, university of derby. beaumont j. . card tricks with gloves? they thought cardini crazy. in: the boston daily globe. boston massachusetts: john w. henry. bow jn. . treating resistant children. child and adolescent social work ( ): – doi . /bf . bowman rp. . the magic counselor: using magic tricks as tools to teach children guidance lessons. elementary school guidance and counseling : – . bowman rp. . magic tricks using common objects that teach children strategies for success. chapin: youthlight. 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nuclear medicine (aimn) received: september / accepted: september / published online: september © italian association of nuclear medicine and molecular imaging abstract introduction to summarize and comment the available surveys on the impact of covid- on nuclear medicine (nm) departments. methods recent surveys about the impact of covid- on nuclear medicine (nm) departments have been searched on available scientific database. results three surveys have been found and commented. some differences among the surveys should be kept in mind. all studies agreed that covid- had a relevant impact on nm departments. conclusion surveys about the impact of covid- in nm could improve the departments’ daily activities, to find a com- promise between the security protocols suggested by international guidelines. keywords survey · covid · nuclear medicine coronavirus disease (covid- ) is still spreading worldwide, and the pandemic peak has probably not been reached yet. during the pandemic, nuclear medicine (nm) departments have been involved in several changes and issues, such as new scheduling praxes for nm diagnostic and therapeutic procedures, the assistance of patients with diagnosed or suspected covid- , and the prevention of covid- spreading in the departments. for these rea- sons, some research groups promoted different international surveys to understand the impact of the pandemic on nm departments [ – ]. the young group of the italian association of nuclear medicine (aimn) developed the first international survey to evaluate the impact of covid- in nm and performed a preliminary report of the obtained responses [ ]. two- hundred and ninety-six individual responders from departments were evaluated. most of the responders were from europe ( %). approximately, all departments changed their scheduling praxes due to the pandemic ( %). in most departments, scheduled diagnostic and therapeutic proce- dures were allowed but quantitatively reduced ( %). a significant reduction (more than %) of diagnostic and therapeutic procedures affected % and % of the depart- ments, respectively. incidental covid- signs in nm exams occurred in about half of the departments. only a few departments were closed or shifted to assist patients with covid- ( %). finally, most of the responders thought that the pandemic would not permanently change the work of nm departments in the future ( %) [ ]. another international research group promoted a survey about the global impact of covid- on nm departments [ ]. a total of responses from countries were regis- tered and analysed. the authors reported an average decline of % in diagnostic procedures. namely, pet/ct scans decreased by an average of %, sentinel lymph-node pro- cedures decreased by %, lung scans by %, bone scans by %, myocardial studies by %, and thyroid studies by %. about radionuclide therapies, they reported a reduction * salvatore annunziata salvatoreannunziata@live.it nuclear medicine unit, ircss regina elena national cancer institute, via elio chianesi ,  rome, italy department of nuclear medicine, university of brescia and spedali civili brescia, brescia, italy nuclear medicine unit, department of biomedical and dental sciences and of morpho-functional imaging, university of messina, messina, italy nuclear medicine unit, irccs ospedale policlinico san martino, genoa, italy http://crossmark.crossref.org/dialog/?doi= . /s - - -z&domain=pdf clinical and translational imaging ( ) : – of %, ranging from over % in latin america and asiatic south-east to % in south korea and singapore. survey results showed that % of the participating sites limited their mtc/ mo generator purchases, and % of them temporarily canceled orders. insufficient supplies of essen- tial materials (radioisotopes, generators, and kits), especially for mtc/ mo generators and i, were mainly reported in africa, asia, and latin america [ ]. the same research group promoted a regional analysis of the impact of covid- on nm in germany, austria, and switzerland [ ]. in this survey, complete responses were recorded. nearly, all participants reported a decline of nm diagnostic procedures. the mean reduction for pet/ct, scintigraphy of bone, myocardium, lung, thyroid, sentinel lymph-node was of %, %, %, %, %, and %, respectively. furthermore, % of the participants reported a reduction in therapeutic procedures, mainly for benign thyroid disease ( %) and radiosynoviorthesis ( %), while tumor therapies remained almost stable. also, half of the participants reported a shortage of staff’s protective equip- ment [ ]. a summary of the results from the three surveys is reported in table  . some limitations and differences among these three surveys should be kept in mind: the structure of the ques- tionnaires, the methods used to invite the participants, the number of responses from the same department, and the dis- crepancies due to geographical criteria and pandemic stages. nevertheless, all the three studies agreed that covid- had a relevant impact on nm departments in the schedul- ing praxes for diagnostic and therapeutic procedures, the assistance of patients with diagnosed or suspected covid- , and the prevention of covid- spreading in the departments. the decrease and/or the postponement of medical procedures underlined that potentially many patients have been “missed” during the pandemic, and this may impact on the disease’s clinical course, potentially affect- ing also the quality of life and survival, opening an ethi- cal debate. namely, according to the global survey by freudenberg et al. [ ], it is unknown whether the decrease in the nm procedures is attributable to patients’ fears and preferences, safety precautions adopted by nm centers, disruption of supply chains and logistical challenges, or a combination of all the above [ ]. nevertheless, some suggestions for future actions could be derived from all these studies as: awareness of the main guidelines for the organization of the departments; sched- uling of nm examinations considering urgency and appro- priateness criteria; robust screening process as phone or on-site pre-triage; attention to simply rules (also hygienic), as proper distancing and escalation for suspected cases; further investigations for possible indications of nm examinations in the ordinary management of covid- [ ]. according to freudenberg et al. [ ], it is our responsi- bility to continue providing essential services to ascertain adequate diagnostic and therapeutic patient services, while ensuring proper hygienic measures, thus safeguarding the health of staff, patients and the public. it is also essential to address the significant disruptive economic impact of this pandemic on healthcare systems, with particular inter- est to nm departments. the more we know about the cur- rent and upcoming challenges, the better we can learn and adapt collectively to them [ ]. for instance, the fruitful cooperation between different nm departments to provide a prompt radionuclide treatment to patients coming from different italian regions should be underlined. the lesson we learned from this global experience should be useful to improve nm departments’ daily activi- ties, to find a compromise between the security protocols suggested by international guidelines and the need to con- tinue medical assistance in favor of the emergency needs without sacrificing patients’ healthcare. compliance with ethical standards conflict of interest the authors declare no conflict of interest. research involving human participants and/or animals the present manuscript does not involve human participants. table comparison of the mains results emerging by the three recent surveys performed about the impact of covid- pandemic on nm departments in different countries worldwide nm nuclear medicine, covid- coronavirus disease a worst reduction over the total of the responders b mean reduction among the responders authors, [ref] journal name reduction of nm procedures (%) conventional scintigraphy pet therapy annunziata et al. [ ] eur j nucl med mol imaging a a a freudenberg et al. [ ] j nucl med b b b freudenberg et al. [ ] nuklearmedizine b b b clinical and translational imaging ( ) : – informed consent the present manuscript does not require an informed consent collection. references . annunziata s, bauckneht m, albano d et al ( ) impact of the covid- pandemic in nuclear medicine departments: prelimi- nary report of the first international survey. eur j nucl med mol imaging ( ): – . freudenberg ls, paez d, giammarile f et al ( )global impact of covid- on nuclear medicine departments: an international survey in april . j nucl med (published online ahead of print, july ) . freudenberg ls, dittmer u, herrmann k ( ) impact of covid- on nuclear medicine in germany, austria and swit- zerland: an international survey in april . auswirkungen von covid- auf die nuklearmedizin in deutschland, Österreich und der schweiz: eine internationale umfrage im april . nuklearmedizin ( ): – publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. 	surveys on covid- in nuclear medicine: what happened and what we learned 	abstract 	introduction 	methods 	results 	conclusion 	references http://www.theartsjournal.org/index.php/site/index journal of arts & humanities animal-assisted therapy and application to older adults in long term care kimberly ann huff-mercer abstract in the past thirty years animal-assisted therapy (aat) has moved beyond anecdotal status to a scientific evidence-based intervention. aat comes in many shapes and sizes. there are a variety of animals which can be used such as dogs, cats, rabbits, horses, guinea pigs, goats, dolphins, and even fish aquariums. loneliness is a common theme among older adults in long term care (ltc). many older adults living in ltc facilities feel isolated. some have little contact with family members or friends. many describe feelings of loneliness and withdraw from social activities and interaction with others. some feel as if they have nothing to look forward to and find no useful purpose in life . the absence of having another to care for or nurture can also be distressing. the purpose of this project was to explore the use of aat as an intervention to decrease loneliness in residents living in a ltc setting by introducing visits from a sphynx cat registered by the delta society as a therapy animal. the project sample consisted of seven participants all over the age of years who resided in a ltc facility in texas. pre-intervention and post-intervention checklists and open-ended questions were employed to collect data from participants. analysis of the project findings revealed a notable decrease in loneliness. key words: animal-assisted therapy, older adults, loneliness, long term care. available online: th may, . this is an open access article under creative commons attribution . license, . . introduction aat can be especially beneficial for the elderly population. in recent years, health related disciplines have begun to utilize aat as a mode of healing the mind, body, and spirit (ormerod, ). it is believed the interaction between humans and animals may stimulate the release of endorphins which increase feelings of happiness, contentment, and pleasure. feelings of loneliness and despair can be improved with animal contact (holloway, ). assistant professor, nursing department, midwestern state university, wichita falls, tx, email: kim.mercer@mwsu.edu. animal-assisted therapy and applic ation ... http://www.theartsjournal.org/index.php/site/index calvert ( ) examined aat as a means to decrease loneliness. she focused on older adults living in nursing homes and concluded that those residents who interacted more with animals experienced less loneliness than did those who interacted less with animals. routasalo and pitkala ( ) regarded loneliness as the “geriatric giant.” this is particularly evident for older adults living in ltc facilities. the basic need to touch is often denied to older adults living in an institutionalized environment. animals can fulfill that need by having their bodies stroked, sitting in a lap, or being nuzzled or hugged by a resident (abramowitz, ). the idea of this study was to introduce a therapy animal (sphynx cat) to older adults residing in a ltc facility in texas. the aim of this project was to determine whether this intervention could decrease loneliness by increasing interaction among the participants. since the s, the human-animal bond has become more research based. no longer are animals considered complementary therapy. since the term “pet therapy” was first coined in , additional research studies on this topic have been conducted. aat is now recognized as a legitimate therapeutic intervention (hooker, freeman & stewart, ). this recognition has assisted in the integration of aat into many health care institutions today. what is evident is that dogs tend to dominate as the type of animal used in most research studies. one could speculate the reason for this might be the relative ease of training dogs over other animals. studies utilizing cats for aat are sparse. recently however, cats have been introduced with more frequency for aat particularly in long term healthcare facilities. cats can be held, carried, and passed from one person to another. they provide not only the tactile sensation of warmth and softness but also the feel of a vibrating body as they purr. cats can assist in relieving loneliness especially for the institutionalized older adult (marano, ). there are also studies that use a variety of animals making it sometimes difficult to discern the utility of aat in certain environments. some investigators view the lack of homogeneity in outcome measures across studies as weaknesses of meta-analysis. other investigators assert that a more robust depiction of aat can be seen because of the variability encountered in measuring an assortment of dependent variables and constructs (lipsy & wilson, ). although there have been four decades of research examining the benefits of human and animal interactions on both the physical and psychological health of humans, studies remain preliminary (cherniack & cherniack, ). “some investigations have used rigorous methodology, utilizing randomized designs comparing aat with control groups or established treatments, while others have used simple pre- and post-test designs” (nimer & lundahl, ). souter & miller ( ) conducted a meta-analysis to examine the effectiveness of aat in depressive symptoms in humans and noted gaps in aat research. in addition, flawed methodologies in study design and evaluation of animal-assisted interventions were noted. much of the current literature base consists of anecdotal reporting (stern and chur-hansen, ). herzog ( ) argues that the existence of a pet having an effect on one’s mental health as well as physical health is not factual but rather hypothetical. this evidence-based project was implemented to determine if there was a decrease in loneliness in individuals selected to participate in this study. the data collected from the participants demonstrated a decrease in loneliness. in this study, the introduction of a therapy animal (sphynx cat) to older adults living in a ltc facility in texas demonstrated an increase in eye contact with others, engagement in conversation, and social interaction. the participants consistently reported feeling less lonely and happier after the aat visits. aat can stimulate awareness and interaction as well as decrease loneliness. aat can provide variety in the often predictable lives of those living in institutionalized facilities. the number of older adults mercer, jah ( ), vol. , no. : - http://www.theartsjournal.org/index.php/site/index residing in ltc is accelerating as life expectancy continues to increase. many are discovering it is not cancer or heart disease that is the most serious threat to the elderly. it is loneliness ( pawprints and purrs, ). love is the best medicine and animals are one of nature’s finest suppliers. despite the domination of dogs for aat, felines can be very suitable animals for aat as well. the following sections will start with a literature review presenting research, hierarchy of evidence and levels of evidence related to various research studies. a synthesis of the literature will be discussed. the selected intervention will be reviewed. furthermore, the methodology discussing how the evidence - based project was conducted, and the results of the project will be discussed and reviewed. lastly, the conclusion and policy implications for the future will be presented. . literature . review of literature this section will discuss the literature reviewed as well as other research studies reviewed. individual research studies will be described with ratings of the level of evidence for the literature and the scale for the rating will be provided. the use of therapy animals has been around for centuries. in ancient times, both greece and rome kept dogs in their healing temples and lap dogs were encouraged for women of middle age. others kept dogs close believing they would preserve mental health. in the ’s birds and other animals were successfully introduced to a psychiatric asylum in england known as the york retreat (jorgenson, ). simply the presence of an animal can create a sense of comfort for many people. enhanced communication among individuals has been noted when introducing an animal to therapy sessions (grado, ). an aat program at a ltc facility in illinois had a twenty year follow-up study conducted in which concluded that aat was still considered by staff and residents alike to be beneficial both psychologically and physically (behling, haefner & stowe, ). a case study in south africa revealed the use of aat increased socialization and improved self-esteem among the participants (lubbe & scholtz, ). even florence nightingale understood the worth of aat. in she wrote “a small pet is often an excellent companion for the sick, for long chronic cases especially. a pet bird in a cage is sometimes the only pleasure for an invalid confined for years to the same room” (nightingale, ). dr. boris levinson a psychotherapist first recorded his observations of the use of animals with patients in . his presentation that year at the american psychological association was received with skepticism and ridicule by many of his psychology and psychiatry colleagues. undaunted, he pursued the use of animals in his practice and continued to report his findings. ironically one of the great forefathers before levinson was known for keeping a dog in his office during patient visits. his name was sigmund freud (bloom, wijewickrama & smith, ). “animal interactions promote positive emotions, which can boost confidence and reduce feelings of loneliness, sadness, anger, and insecurity. this may be particularly significant for elderly persons, particularly those residing in nursing homes, where such feelings are common experiences” (ernst, ). quantitative research studies of aat are relatively new. nimer and lundahl ( ) conducted a meta- analysis focusing on quantitative reviews of studies utilizing aat. a comprehensive search of the literature revealed a variance in the types of animals used, aat settings employed for intervention, and the presence or absence of mental health barriers of the subjects studied. animal-assisted therapy and applic ation ... http://www.theartsjournal.org/index.php/site/index the meta-analysis by nimer and lundahl ( ) also demonstrated how the use of aat as an adjunct to other interventions can vary greatly. the literature review illustrated a wide range of problems targeting aat in conjunction with other therapeutic interventions. because of such variance it was suggested there may be a lack of universal understanding about the usefulness of aat. moderator analysis was used in some studies to account for the variance, but it could not account for all variance in all studies. approximately one half of the studies in this meta-analysis used a control group. the utility of aat can be most evident in the elderly population. persons living in long-term health care facilities often feel isolated, and rejected by society. many share feelings of loneliness. a quasi - experimental study was conducted by (fick, ) which supported the use of aat in nursing homes. the results of the study found that the presence of an animal stimulates social interaction and provides an environment that fosters cognitive awareness. kawamura, niiyama, and niiyama ( ) conducted a research study in a residential nursing home in northern japan. the purpose of this study was to assess the effects of aat on older adults in a nursing home, both psychologically and physically. although no control groups were utilized, they concluded that the participants had an improvement in mental functions after exposure to aat. most research studies to date have not used control groups for comparison of their research findings. greater confidence could be assured in studies employing control groups. there are a limited number of qualitative reviews on aat. brodie and biley ( ) however, performed a qualitative review of aat articles and concluded improved happiness, social interactions, and physiological health could be gleaned from the use of aat. a pilot study conducted in melbourne australia (prosser, townsend, & staiger, ) reported improvement in the health and well-being of older adults living in a residential facility when allowed visitation with animals. the development of a reciprocal affection can produce many desirable health benefits both physically and mentally. loneliness is a common feeling among older adults. bloom et al., ( ) compared two different groups of older adults living in nursing homes. one group received a visit by a volunteer with a dog and the other group received a visit by a volunteer without a dog. they concluded there were significantly positive mood difference s in nursing home patients who received visits with a dog present. a randomized study by (banks and banks, ) compared the effects of group and individual aat on loneliness in residents of long-term healthcare facilities. their study noted three primary reasons associated with restriction in an older adult’s quality of life. they were loss of personal belongings, loss of personal possessions (including a pet), and loss of social activity. table: listing articles and level of hierarchy of evidence: author/year level of evidence nimer, j. & lundahl, b., level i bloom, p., wijewickrama, r. & smith, b., level ii bank, m. & banks, w., level ii brodie, s. & biley, f., level v kawamura, n., niiyama, m. & niiyama, h., level vi fick, k., level vi prosser, l., townsend, m. & staiger, p., level vi . synthesis of literature aat can be used alone or as an adjunct to other therapeutic interventions. aat can trigger memories and reminisce of past pets and reconnect people with the outside world. animals can ease the dawning of old age by creating diversion. observing the antics and playfulness of a dog or cat can facilitate the dismissal of everyday aches and pains. animals do not care how a person looks, acts, sounds or smells. mercer, jah ( ), vol. , no. : - http://www.theartsjournal.org/index.php/site/index they can lift spirits and rid boredom. forgetfulness and disorientation can cause some older adults to shy away from social interaction with family and friends as they are often fearful of rebuffs. an animal is a nonjudgmental listener who doesn’t mind hearing the same stories over and over again. an animal can provide a pleasant conversational topic which can rekindle memories and feelings of joy ( stang, ). there are a limited number of qualitative studies pertaining to the use of aat in ltc facilities; therefore the literature review on this subject is sparse. it is uncertain which types of animals work best in a given setting with a particular subset of subjects. there are also studies that use a variety of animals making it sometimes difficult to discern the utility of aat in certain environments. the human-animal relationship and its implications for healthcare has garnered so much interest in the past that many organizations, governmental task forces, and university studies have been developed to examine the potential benefits (jorgenson, ). prosser et al., ( ) found that when elderly people entered a residential care center they often felt as if their lives had been disrupted causing detrimental effects on their health and well-being. many felt a sense of loneliness. it is believed pets evoke a reassuring, non-threatening, tactile comfort thus breaking the cycle of loneliness and social withdrawal often seen in older adults living in ltc facilities. the introduction of a pet as an intervention to change the environment is believed to reduce feelings of isolation (brodie & briley, ). they concluded that aat was most effective in decreasing loneliness for ltc residents if provided individually verses a group setting. brickel ( ) found that introducing a cat to nursing home residents increased resident motivation to participate in activities at the facility thus decreasing feelings of loneliness. banks and banks ( ) found in one of their studies that lonelier individuals benefited the most from aat. they advocated aat as an intervention useful to increase social interaction and combat feelings of loneliness especially in old adults living in ltc facilities. after an extensive review of the literature, a targeted intervention emerged. the intervention was the application of aat to older adults living in ltc facilities to decrease loneliness. loneliness is a common issue among older adults. a person can suffer from loneliness even if surrounded by people. it was discovered that loneliness can be manipulated by interventions that develop social skills and elevate self-esteem (routasalo and pitkala, ). banks ( ) found that loneliness in nursing home residents could be reduced using aat. the intervention revealed that simply letting the animals spend time with the residents decreased feelings of loneliness. the aat visits gave the residents something to talk about to one another. sharing the att experience amongst themselves seemed to diminish feelings of loneliness. the first step was to select a ltc facility. banks and banks ( ) note that older adults are predominant within the demographics of ltc facilities. the facility chosen provided a strength for this project as the intervention was directed toward an aged population. an analysis was done to determine strengths, weaknesses, opportunities and threats (swot). the strengths projected for the study included the ability of an animal to decrease loneliness in older institutionalized adults (marano, ). there were no weaknesses identified. there were opportunities for residents to increase self-image and coping abilities. according to donaldson and watson ( ) ageing can interact with loneliness by leading to poor self-image and inability to cope with loss. the only threat identified was the possibility of an animal inflicted injury. the second step was to identify a therapy animal for the intervention. the animal selected for this intervention was a male sphynx cat named spencer. t his cat was chosen because he was hairless, decreasing the chances of allergic responses among residents. the investigator (nurse practiti oner) and the cat successfully completed all training requirements set forth by the delta society and became registered pet partners. the delta society screens and evaluates all animals for temperament and suitability before granting pet partner recognition (delta society, ). animal-assisted therapy and applic ation ... http://www.theartsjournal.org/index.php/site/index the third step was to meet with the ltc facility administrator. this meeting was held and the purpose of the study reviewed. approval was granted and a clinical contract with the facility signed. next, predetermined criteria were established for subject inclusion for the study. criteria included subjects over the age of years who functioned independently. a total of seven participants were recruited to allow for possible attrition. a meeting was held with both shifts of nursing staffs at the ltc facility to introduce the therapy animal, and to educate them on the purpose of the study and the process. concerns were identified and questions answered. the cat was carried in a small blanket, wore a special harness and was on lead at all times during visits with the subjects. the investigator wore a delta society identification badge and the cat wore a delta society identification tag while at the facility. aat visits commenced twice per week for weeks. during aat, the subjects were asked open ended questions before and after the encounter with the cat. pre-intervention and post-intervention the question was asked “how do you feel now?” a notation was also made related to the subject’s eye contact with others, engagement in conversation, and interest in the cat pre-intervention and post-intervention. the responses gleaned from the subjects determined the effectiveness of the aat intervention in decreasing loneliness in older adults residing in ltc facilities. ongoing feedback from multidisciplinary team members was solicited throughout the study. . theory used for development of intervention the theory selected for the development of this intervention was the cognitive theory of loneliness. this theory considers loneliness as a state of being which can be manipulated via interventions which can develop social skills and increase self-esteem. this theory focuses on the individual’s experiences of loneliness and responses to loneliness. according to this theory the way a person feels about their loneliness determines their experience of loneliness (donaldson and watson, ). it is from this supposition that loneliness is considered to be a feeling which can be manipulated. the cognitive theory of loneliness fit well with the proposed intervention and supported the open ended question asked pre and post-intervention (“how do you feel now?”). pre-intervention responses provided baseline data at the beginning of each visit about how the subjects were feeling. then after the intervention was introduced in the form of an aat visit with the cat, the subjects were asked again, “how do you feel now?” subject responses to the question and whether or not there was noticeable eye contact or conversation with others pre-intervention and post-intervention were also noted. changes of the participant’s feelings pre-intervention and post-intervention was key to examining the effects of aat in decreasing loneliness in older adults. . methodology . guiding framework the model chosen as a framework for this intervention is the ace star model of knowledge transformation. this model helped to delineate the features, cycles and characteristics of knowledge as it relates to evidence-based practice (ebp). while it is inclusive of existing knowledge, it also accounts for new scientific knowledge. the information is then combined and integrated into practice. it is a systematic process (stevens, ). the model is configured in a five point star. each star point represents a different stage of knowledge transformation. the first star point is knowledge discovery. this is the stage in which knowledge is spawned. new knowledge can be discovered in the process of conventional research methodologies. this is the stage where the body of research is created related to clinical actions (stevens, ). it was in this stage that it was discovered that nursing literature began addressing animals as a type of nursing intervention in the s. numerous descriptive accounts utilizing animals to create positive outcomes mercer, jah ( ), vol. , no. : - http://www.theartsjournal.org/index.php/site/index in patient care became apparent. nursing also began to recognize that animals seem to fill a void for older adults living in ltc facilities. the animals made the residents feel needed. in the s there was an upsurge in the research of aat. many descriptive designs were supported by experimental research findings (hooker et al., ). it was from these scientific inquiries and various traditional research methodologies that the stage was set for a new clinical intervention to emerge. ideas for the proposed intervention began to amass. the second star point is evidence summary. this represents the next stage of knowledge transformation. it is also considered to be a stage in which knowledge is generated. summarization of knowledge occurs simultaneously. review of the literature, systematic reviews, and meta-analysis were some of the types of evidence summaries found in this stage (stevens, ). this stage is the synthesis of the literature reviewed previously and discussed under the synthesis of literature section of this paper. the third star point is translation. this entailed taking the data gleaned from the evidence summaries and translating it into clinical practice (stevens, ). the intervention that emerged from the synthesis of literature was the use of aat to decrease loneliness in older adults living in ltc facilities. evidence based studies indicated there is a synergistic experience between humans and animals which serve to diminish feelings of loneliness (jorgenson, ). in this stage the data collection tool (pre- intervention and post-intervention checklists) were developed and inclusion criteria for study participants formulated. the fourth star point is integration. in this step, practices of the individual and the organization are changed. this is done via formal and informal avenues. factors affecting the intervention’s rate of adoption and integration into sustainable systems are noted. this information was previously discussed under the intervention section of this paper. the fifth star point is evaluation. this is the last stage of the ace star model of k nowledge transformation. in this stage the value of evidence -based practice was examined in relation to the effect on resident health outcomes. the satisfaction of aat among the provider, staff and residents was noted. the efficacy of the intervention was assessed and incorporated as part of evidence-based practice which improved the healthcare quality of the study participants. initially four females and three males agreed to participate. one female died in the first month of the intervention. participant ages ranged between years to years. some of the participants had owned pets before and others had not. some of the participants liked cats. one did not but still elected to be a participant. most did not receive regular visits from friends and family members. one chose to stay in her room and would not socialize with others, except for the aat visits with the cat. three of the participants had varying degrees of social withdrawal noted in their records either because of health problems, lack of emotional control or personal preference. all participants had multiple medical diagnoses. the results yielded from the study included a very favorable response to aat visits. there were no aat visits in which any subject reported an unfavorable response. some common themes were recognized over the course of the study. it was noted pre-intervention that when the subjects were asked “how do you feel now” the answers ran the gamut from “alone, lonely, discouraged, isolated, alienated, hopeless, down, blue, bored, forgotten, worthless, poorly, weak, useless, depressed, frustrated, nonproductive, bad, terrible, and sad.” participants did not always make eye contact or engage in conversation with others. however, the participants were always interested in the cat. post-intervention when the participants were asked “how do you feel now” the responses ranged from “less lonely, more content, cheered up, excited, calmer, less anxious, good, less isolated, like somebody cares, less sad, special, less worried, more relaxed, hopeful, better, joyful, peaceful, upbeat, more alive and honored.” some of the other comments made by the participants included “i feel like spencer’s grandmother, he smiles at me, he brightens my day, he reminds me of my pet, and he loves me.” animal-assisted therapy and applic ation ... http://www.theartsjournal.org/index.php/site/index . results and discussion this section will discuss the evaluation and results of the process and outcomes of the study. this was the last step (fifth star point) of the guiding framework used. . process and outcome evaluation the project goal was the application of aat to older adults in a ltc facility to decrease loneliness. the introduction of a therapy animal (sphynx cat) to a specific unit in a ltc in texas was used. seven residents were voluntarily recruited for the intervention and signed consent forms were obtained from each. pre-intervention data was collected during each visit, the cat was introduced by the investigator to each participant for a visit, and each participant was then asked if they would like to stroke the cat. this process was repeated with every participant (with the exception of one participant who died in the first month of the intervention) for a total of weeks ( visits). the process was evaluated by noting how the intervention flowed and whether to add, delete, or revise the steps or process. the outcomes to be evaluated consisted of one question and three observations by the investigator. this was done both pre-intervention and post-intervention, utilizing a checklist. the one open-ended question asked to the participants was, “how do you feel now?” the three observations made by the investigator included whether the participant was engaged in conversation, made eye contact with others, and showed an interest in stroking the cat. . results of evaluation of process and outcomes the results of the evaluation of the process yielded some modifications in how the intervention was conducted. it was first thought a group setting would be most beneficial but it became evident at the beginning that one on one visits with the subjects were a more practical means of implementing the intervention. this was because the subjects had differently scheduled activities and meal times that had to be accommodated. no additional steps of the process were added, deleted or revised. the results of the evaluation of the outcomes yielded overwhelmingly positive responses to aat visits. the one open ended question asked by the investigator pre -intervention and post-intervention was “how do you feel now?” the responses were positive each time. the three observations made pre - intervention and post-intervention by the investigator related to engagement in conversation, eye contact with others and interest in stroking cat were also noted to be overwhelmingly favorable. . conclusion and policy implications in conclusion, the effects of introducing aat to older adults residing in a ltc facility generated much interest and curiosity from most everyone on the unit. the nursing staff and social workers frequently reported many of the residents asking for spencer and wanting longer visits with him. in addition, the three subjects diagnosed with varying degrees of social withdrawal became more social and left their rooms more frequently to talk about the cat with others. from the data collected via the checklists pre- intervention and post-intervention, one can draw the conclusion that aat in older adults residing in ltc facilities has many benefits; including the decrease of loneliness in older adults. there were no “misfits” discovered. the data seemed to fit the model used for development of this intervention. there were some unforeseen lessons learned. for example, this population of individuals were very much creatures of habit. they had a daily schedule and they did not want to deviate. therefore, the investigator had to spend a little more time than expected working around their schedules to mercer, jah ( ), vol. , no. : - http://www.theartsjournal.org/index.php/site/index implement the intervention. one resident wanted to participate in the study until she realized the time clashed with her favorite television program. also, once the word was out that spencer was making visits, many were trying to figure who was participating in the study and if there would be another study to participate in later. the nursing staff also became quite attached to spencer. he frequently left the facility with multiple lipstick smudges on his body! . future implications a suggestion for change to this intervention would be to shorten the study by one month. the data gleaned after two months was fairly repetitive. some suggestions for nurses in general would be to embrace aat as a way to improve the quality of life for older adults in long term care facilities. before embarking upon an aat program, i would highly recommend the owner and animal receive education, training and become registered pet partners with the delta society. this helps to ensure animal suitability for such visits. loneliness is not inevitable in old age but it is a significant problem. suggestions for nurses who are translators, implementers and researchers would include the need for further research to legitimize aat and link it to improved healthcare outcomes. philosophically nursing embraces total well-being. there is a need for future research and translation of this research to the bedside in order for aat to be seen as a valid contributor to better health. since the initiation of aat with the cat, the ltc facility nursing staff state there has been some discussion among nursing staff, residents and administration about obtaining a resident feline. spencer has not been forgotten and continues to make periodic visits to not only the participants of the aat intervention but many other residents who request his presence. those participating in the intervention continue to keep spencer’s picture displayed in their rooms. the nursing staff state they speak of him often. the introduction of aat should be carefully planned. there are many aspects to be considered and staff involvement from the beginning is essential. involvement of other disciplines within the facility is a lso vital to garner support for aat early on. the objectives of aat should be reviewed with all staff and evidence-based practice guidelines should be developed. not all animals are suitable for aat. the temperament of the animal should be considered as well as the handler’s experience with the animal. examination of the animal by a veterinarian for good health and current vaccinations prior to resident visitation is important. assessment for zoonotic disease risks with corresponding procedures in place to mitigate these risks is also recommended. a written policy or guidelines may also be warranted as a safeguard for the welfare of the residents of the facility as well as the animal. resident attitudes, allergies and phobias all need to be taken into account before beginning aat. a facility meeting should be held to discuss the scientific evidence supporting aat, examine existing practice, address any concerns, obtain feedback from staff and residents and make decisions on how to proceed with aat. other topics such as animal selection, animal screening and suitability, animal care, infection control procedure, staff training, measurement indicators and documentation should be discussed. references animal-assisted therapy and applic ation ... http://www.theartsjournal.org/index.php/site/index abramowitz, l. ( ). pet therapy for the elderly. retrieved on february , from http://www.wholefamily.com/about plus/caregiving/pet_therapy.html. banks, m., & banks, w. ( ). the effects of group and individual animal-assisted therapy on loneliness in residents of long-term care facilities. anthrozoos, ( ), - . banks, w. ( ). man’s best friend: study shows lonely seniors prefer playtime with pooch over human interaction. retrieved on february , from http://www.sciencedaily.com/releases. behling, r., haefner, j. & stowe, m. ( ). animal programs and animal-assisted therapy in illinois long term care facilities twenty years later ( - ). academy of health care management journal, ( ), ( ). bloom, p., wijewickrama, r., & smith, b. ( ). effects of pets versus people visits with nursing home residents. journal of gerontological social work, , - . brickel, c. ( ). the therapeutic roles of cat mascots with a hospital based geriatric population: a staff survey. gerontologist : - . brodie, s. & biley, f. 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( ). ace: learn about ebp. retrieved on march , from http://www.acestar.uthscsa.edu. l http://www.essortment.com/lifestyle/pettherapyanim_sglr.htm http://www.acestar.uthscsa.edu/ conversations acrosos the divide conversations across the divide: journey of an emerging health care provider by david chiu b.sc., dalhousie university, a thesis submitted in partial fulfillment of the requirements for the degree of master of arts in the faculty of graduate studies (counselling psychology) the university of british columbia (vancouver) may © david chiu, ii abstract this is an account of my personal journey of struggles, reflections and realizations as a care provider for individuals who live with cancer. using the autoethnography method, i asked the very personally relevant question, “how do i understand my role as an emerging health care provider (hcp) to immigrant and young adults with cancer?” in other words, where do i fit in? how can i be the most effective caregiver possible? this telling of my journey incorporates my own experiences as well as the experiences of those who live and work with cancer. the journey begins almost a decade ago with an unexpected phone call that sends me to the bedside of a family member with cancer, and proceeds to my more recent experiences as a family caregiver, volunteer and counselling student and researcher. drawing on multiple data sources, i explore the concept of health care provider, the desire to protect others and wear masks, and my own feelings of regret and guilt. although this thesis presents my own realizations and insights, i hope that readers of these stories find resonance or dissonance with their own experiences, allowing them to make more sense of their own roles and circumstances. iii preface the research described in this thesis was approved by the behavioural research ethics board at the university of british columbia, application id h - . iv table of contents abstract ..................................................................................................................................... ii preface ...................................................................................................................................... iii table of contents ...................................................................................................................... iv list of images .......................................................................................................................... vii acknowledgements ................................................................................................................. viii dedication ................................................................................................................................. ix chapter : introduction ............................................................................................................... . journey beginnings ............................................................................................ . thesis overview ................................................................................................. . research question .............................................................................................. . deconstructing culture and the self ................................................................... chapter : methodology ............................................................................................................ . orienting worldview ........................................................................................ . auto/ethno/graphic inquiry ............................................................................... . . rationale for adopting a qualitative ethnographic approach. ....................... . . rationale for autoethnography. ................................................................... . . situating myself. ......................................................................................... . collecting data................................................................................................. . . roles. ......................................................................................................... . . methods and sources of data collection. ...................................................... . data analysis ................................................................................................... . . questions for reflexive analysis. ................................................................. chapter : stories ...................................................................................................................... . directions emerging ......................................................................................... . . arriving. ..................................................................................................... . . strangers meeting. ...................................................................................... . . adrift. ......................................................................................................... . . connections. ............................................................................................... . . where do i belong?..................................................................................... v . . bearing it. ................................................................................................... . . deep sleep. ................................................................................................. . . misunderstandings. ..................................................................................... . . bear bear. ................................................................................................... . . auld lang syne. ......................................................................................... . . evolving questions.................................................................................... . . hope renewed and yet hope lost. ............................................................... . . turning inward. ........................................................................................ . roles, masks and this divide between us ........................................................ . . handling others with care. .......................................................................... . . my critical voice. ........................................................................................ . . drifting apart. ............................................................................................. . . struggling to find the balance. .................................................................... . . our cultural context and the divide between us. .......................................... . . language divides. ....................................................................................... . . perceptions that divide. ............................................................................... . . finding clarity amidst confusion. ................................................................ . . practice dying. ............................................................................................ . . summary. ................................................................................................. . deconstructing the health care provider .......................................................... . . who are health care providers? ................................................................... . . burdens on care providers........................................................................... . . volunteers as care providers. .................................................................... . . a willingness to respond. .......................................................................... . . the many faces of care providing. ............................................................ . . summary. ................................................................................................. . conversations with nímāmā ........................................................................... . . juxtaposition of our two realities. ............................................................. . . failing you. .............................................................................................. . . protecting each other. ............................................................................... vi . . trying something different. ...................................................................... . . protecting ourselves. ................................................................................. . . someone who is simply present. ............................................................... . . courage and strength. ............................................................................... . . your gift of pain. ...................................................................................... chapter : conclusion ............................................................................................................. . implications for my research directions ........................................................ . implications for my practice .......................................................................... . implications for social policy ......................................................................... . finally ............................................................................................................ references .............................................................................................................................. appendices ............................................................................................................................. appendix a. initial research proposal ..................................................................... appendix b. literature review ................................................................................ appendix c. conceptualizing “culture” and the self ............................................... appendix d. culture-gram ...................................................................................... appendix e. journal entry: privilege and responsibility ......................................... appendix f. genogram ............................................................................................ appendix g. my life values ................................................................................... appendix h. timeline of major life experiences related to cancer and dying ...... appendix i. data log .............................................................................................. appendix j. interview questions for patients ........................................................... appendix k. interview questions for health care providers.................................... appendix l. recruitment brochure ......................................................................... appendix m. recruitment flyer............................................................................... appendix n. initial contact letter ........................................................................... appendix o. consent form for patients ................................................................... appendix p. consent form for family members, friends and caregivers ................ appendix q. counselling resources ........................................................................ appendix r. journal entry: waiting ........................................................................ vii list of images image . personal photo from when i was eight......................................................................... image . personal photo of a bulletin board at the cancer agency. .............................................. image . excerpt from diary of a young woman with cancer. .................................................... image . excerpt from diary of a young woman with cancer. .................................................... image . excerpt from diary of a young woman with cancer. .................................................... image . excerpt from diary of a young woman with cancer. .................................................... image . your cancer care team. ............................................................................................... image . excerpt from diary of a young woman with cancer. .................................................. image . personal photo of public art entitled echoes at kitsilano beach in vancouver, bc. ... image . excerpts from diary of a young woman with cancer. ............................................... image . excerpt from diary of a young woman with cancer. ................................................ image . from volunteer handbook: a guide for volunteers. ............................................... file:///c:/users/david/documents/homework/thesis/ - - % thesis _ .docx% _toc viii acknowledgements writing this thesis has been a reflective, rewarding and at times disconcerting experience. i would not have been able to do so without the unwavering support and encouragement of my supervisor, dr. marla buchanan. marla, your championing my growth and development as a counsellor long before i was ever your student has pushed my own expectations beyond anything i could have imagined for myself and for that, i will always be grateful. i am also thankful for the intuitional requirements that brought my path to cross with my co-supervisor at the british columbia cancer agency, dr. amanda ward. amanda, i value our shared commitment to advancing cancer care and familiarity with the scientific method. your questions often reminded me to look outside of the disciplinary and theoretical silos that i occupy. to dr. anusha kassan, your penetrating questions made me think more deeply in both my research and clinical journey. i have been occupied many an evening in considering your comments. to the many individuals whose lived experiences have informed this inquiry and helped me gain a better understanding of my place as a health care provider, i am deeply indebted. i feel privileged by your willingness to share your stories. their impact will continue to be expressed in my work and career long after this document finds itself covered in dust on some library shelf. to my parents, 妈，爸，you know. if i had to say anything now and in this form, it would already be too late. ix dedication for 二姑姑, who lives on in my work, my aspirations and all that is to come. chapter : introduction . journey beginnings this research and personal journey began long before there was ever any consideration to complete a thesis or conduct research or even pursue a career in counselling psychology. my journey began with a single phone call. i remember the day clearly. it was december . i hastily speed through the corridors of the tupper medical building. moments ago, i was locked into a classroom filled with other over-stressed, over-caffeinated students, feverishly writing away, fixated on the precious minutes and seconds ticking away on my final exam in virology. tick tock, tick tock. i reach out my arms towards the door handle to brace for the impact of walking full speed out an exit that i have done so many times before today but this time, it is different. this was my last exam of the term. i walked with an extra bounce in my step from the exhilaration that i was free, free of assignments and due dates, late nights and early mornings. i was free of any and all obligations to the world. ♪♪yeah i’m free, free fallin’. it is a brisk, wintery december day in halifax. there is snow on the ground. maybe we‟ll have a white christmas after all this year, i think. hopefully, not too much snow though. i don‟t want to be shovelling the entire holidays. then again, why does it even matter? i don‟t have anywhere that i need to go for the next two and a half weeks. bring on the snow. as i rush towards my bus stop to meet the ride that will carry me to home sweet home, to warmth and relaxation, i notice my shadow cast onto the ground by the street lights overhead. it‟s dark already, i remark. i‟m embittered. it‟s hard to believe that i spent that much time in that dungeon of a classroom with that crazy exam. i blink, shaking off the negative thought. oh well. that‟s long past me now. never have to think about it again. brain dump? enter. are you sure? most definitely. but it‟s dark already. where has the daylight gone? i lament. it‟s not even that late, not even supper time yet. oh supper! i‟m excited. some delicious leftovers waiting for me in the fridge. just reheat and feast. this time will be different though. no rushing to finish supper just to turn my attention to the very next exam. i am free, absolutely free! i feel a shot of adrenaline course through my body. i take in a deep breath to slow the moment down, to completely cherish this feeling of liberation. the cold air flows into my nostrils and into my lungs. it‟s refreshing. i step into my home. the house is quiet, empty. i‟m reminded that mom has gone back to china for the holidays to help dad. i have the house to myself. my mind swirls with ideas about all the fun i can have with this time off. laze around and do completely unproductive things like playing some favourite videogames from childhood; plan a holiday gathering with friends next week; attend a christmas dinner or two; do some running (which i‟ve put off over the last few weeks on account of school craziness). it‟s been a particularly exhausting term. i‟ve worked so hard to get to this moment, which makes it all the sweeter. this is going to be a great holiday. with supper alongside the tv out of the way, i plop myself down in front of the computer. it‟s quiet, peaceful. i sit with the silence as the computer hums to life. the sudden ringing of the phone breaks my moment of reverie. it‟s dad. his voice is sombre. he tells me that 二姑姑 is in the hospital with cancer. could i go to washington, d.c. to accompany her? what? i‟m outraged and speechless. why me? i protest in silence. my words are more subtle, trying to hide my anger. how could you ask me this? i don‟t even know her that well. there has to be somebody else who is closer to her and more appropriate. no. he rationally explains that all the extended family members are busy and it would not be easy for them to take time off. i scream in a voiceless silence. and yet you think that i‟m not, that i can take time off just like that! there are so many things that i‟m looking forward to these next few weeks here. and now to give it all up! how could you ask me this? i don‟t say any of these things out loud, though i know my tone probably reflects my bitterness. part of me wants him to know it. he senses my reluctance, but instead of addressing it openly, he avoids it as he always does and starts talking about the practical issues. she needs support during this time. it‟ll just be for these few weeks. you can be back before school starts again. calls of familial responsibility and filial piety now swirl in my mind where moments ago there were plans of holiday folly. i begin to feel guilty, the sort that comes about through outside forces or is imposed by someone else‟s arguments and reasoning. i feel resentful. it‟s as though i‟m being forced to choose amongst one alternative. i bite my tongue and try to turn my attention to some of the practical issues as well. what am i going to be doing? i don‟t know her all that well. how can i possibly be of any help? where am i going? when do they need me to go? he answers each question in turn. staying with her in the hospital and attending to her needs. it doesn‟t matter that you don‟t know her that well. she will appreciate your company regardless. cousin charlie can pick you up from the airport and take you there. it would be great if you could go tomorrow. tomorrow! i nearly choke. so i won‟t have any time to enjoy myself. my spirit is deflated at this point. any will to resist has been overpowered by my sense of duty, my cultural value system. in this moment though, these values feel strangely foreign. completely deflated, dejected, disappointed, the conversation ends. it is quiet again, except for the steady hum of the computer fan. i start up the browser and logon to the airline website to buy tickets. departure date? tomorrow. are you sure? i have no choice. . thesis overview and so began my journey in providing care to individuals with cancer. my life changed as a result of my experiences that christmas of with 二姑姑. i spent two weeks there between the hospital and my cousin charlie‟s apartment. over that time, i became aware of a number of things that have changed my life. these realizations include the biomedical culture‟s sometimes tragic disregard of psychological and social dimensions of a patient‟s life despite providing access to the best that modern medicine has to offer; the inseparable connection between the mind and the body; the false pretences that supported my motivation to pursue a career in medicine. in the years subsequent to this watershed experience, i have developed a lasting interest in the area of psychosocial oncology. this personal interest has spawned the current research inquiry. the inquiry itself has not unfolded in a neatly linear way however. there was not a single question and methodology that was sequentially executed from beginning to end. my first research proposal was entitled, “understanding the psychosocial experiences of cancer patients of chinese ethnicity in the british columbian cancer care system.” since then, the inquiry has incorporated a focus on cultural intersections, namely of immigrant young adults with cancer. given the central role of personal culture in shaping one‟s experiences and worldviews, culture also emerged as an important analytic framework. 二姑姑 is pronounced nímāmā in the shanghai dialect of chinese. it is a colloquial title used by children to address the second oldest aunt in a family. nímāmā is how i have always referred to my aunt 邱秀瑾 growing up. this proposal was submitted nearly four years ago for a scholarship competition. it is included as appendix a: initial research proposal to show the changes in my inquiry over time. for a more extensive description of my understanding of the term “culture”, refer to chapter . . all throughout this inquiry, my focus was outward. i endeavoured to understand the experience of the other, whether that be the cancer patient of chinese ethnicity or the immigrant young adult. as i spent time collecting data, a number of very personal questions emerged that i found myself preoccupied with. where do i fit in? how can i be the most effective care provider? that is, “how do i understand my role as an emerging health care provider (hcp) for immigrants and young adults with cancer?” this very self-oriented interest became the main question that guided my inquiry. at this point, i think it is important to briefly clarify what is actually being studied and therefore the intended implications of this research. firstly, a few constructs are worth clarifying. in defining cancer as the experience, i do not mean to suggest that what is being researched pertains only to people with cancer. perhaps more accurately, i am referring to a medical condition that profoundly challenges someone‟s very existence, a subjectively life-threatening illness. similarly, by immigrants and young adults, i allude to populations that are traditionally underserved by and marginalized within society (arnett, ; bleyer & barr, ). there exist systemic challenges and gaps for immigrants and young adults in accessing care that may not necessarily be experienced by most others (cancer care ontario, ). with the scope defined as such, my intention is not to draw from my experience some conclusion about some broader population. indeed, i think that it is imprudent that some research, whether quantitative or qualitative in nature, strive to make brazen claims in the general form of “cancer patients of x diagnosis and y ethnicity experience more challenges with z”. not only would such aims go beyond the intentions of this research, but it would also perpetuate a tradition of over-simplifying and categorizing the complexities of our human experience. this for a more extensive review of the relevant literature, refer to appendix b. research is necessarily focused on the individual, whether it be my personal experiences or the narratives of the patients, family members and care providers with whom i have interacted. moreover, i place myself squarely in this thesis to acknowledge the deeply personal (and therefore subjective) nature of this inquiry and the considerations that have directed its ebb and flow. although my very research question may suggest a certain generalizability of my reflections to all immigrants and young adults with cancer, i will underscore that my experiences are unique and personal. as such, the aim of my research inquiry is not to quantify or establish causality; nor does this thesis hope to uncover and report on a reductionistic universal truth about what being an immigrant or young adult with cancer entails. there will be no list of prescriptive tips or recommendations at the end of this thesis for the solution-seeking reader. instead, my research inquiry originated out of my own very practical concern of figuring out my role as a care provider within a system that centers on the individual immigrant or young adult with cancer, extending across people, places and time. my personal aim is to understand how i can effectively support this complex, multicultural system. in turn, this document will try to provide a richly detailed and evocative narrative of my experience in discovering my role as an emerging hcp. through this account, i hope that you, the reader – whether beginning your journey in health care provision or having served in this role for many years – feel compelled to travel along in this journey and find resonance or dissonance with your own experiences, allowing you to make more sense of your own role and circumstances. these aspirations are in some ways substantial departures from more traditional academic pursuits that are set in positivistic paradigms, couched in the language of objectivity and neutrality, establishing hypotheses to be disproved and using categorical statements. as such, this thesis is written in a different format, not structured according to familiar headings like introduction, literature review, methods, results, discussion and conclusion. instead, this thesis consists primarily of four major sections: ) an introductory section that situates myself in this research inquiry and defines my understanding of the term culture, ) a methods section that describes the methodological traditions and process by which i have conducted this inquiry, ) a narrative account of my realizations about my role as an emerging hcp, and ) a summative section that discusses my conclusions and implications for my own practice and journey in cancer care provision. the most substantive portion of this thesis is chapter , entitled “stories”. it includes four self-reflective dialogues through which i have come to significant realizations about my role as an emerging hcp. each section weaves together conversations with patients, care providers and colleagues; readings; and personal reflections (not necessarily connected by temporal proximity or chronology). each section is also meant to be self-contained, allowing you to proceed through sections separately and in whatever order, while still being able to grasp the conclusions drawn. at the same time, i hope that in reading this entire thesis, you may gain a greater appreciation of my experiences and the cultural context which gave rise to them. the summative section synthesizes my realizations into some ideas about my role as an emerging hcp to immigrant and young adults with cancer. in addition, i will discuss the possible relevance and implications of my personal experiences on the wider cultural context of counselling psychology and cancer care provision. the notable absence of a formal literature review section is intentional. as is consistent with eminent scholarship using this method of self-oriented inquiry (ellis, ), existing knowledge helps to relate the personal (private) experience to the experience of others or wider society (public). as such, the relevant literature is referred to throughout the thesis and serves to situate my experiences a posteriori rather than justify a research design or direction of inquiry a priori. overall, this thesis is written in the style of a narrated documentary. my own journey as an emerging hcp will serve as the backbone of the thesis. in order to provide readers with a more real experience, i recount some of the relevant and at times poignant encounters, conversations and self-reflections that i collected while engaged in the research or as part of my day-to-day experience. oftentimes, i make sense of my experiences through the writing process itself. therefore you may be able to witness my thought and decision-making process as it unfolds. in the tradition of reflexive qualitative research, this level of transparency is used to reveal my own values, beliefs and biases that lead to my conclusions. . research question my hope for this thesis is to share with you, the reader, my journey in coming to understand my role as a hcp. that is, “how do i come to understand my role as an emerging hcp for immigrants and young adults with cancer?” in sharing this journey with you, i hope that you may find resonance or dissonance with your own experiences, allowing you to come to a greater understanding about your own role and circumstances. a more extensive review of the literature in the area of immigrant, young adult and cancer cultures is included as appendix b. . deconstructing culture and the self this research is at its core an inquiry about people‟s experiences at the intersection of cultures (cole, ). as such, i will describe in this section my definition of the term culture and explain where i see the self as being located within this definition. with this understanding, i will situate myself culturally as well as within this research. the term culture is casually and pluralistically referred to by scholars and laypeople alike. exchanges between two individuals or groups from different parts of the world are referred to as cross-cultural exchanges. neighbourhoods or cities can differ in the degree to which they are multicultural. within popular and academic circles alike, multiculturalism is a desirable social phenomenon that encourages people to consider life from a different perspective and develop empathy for fellow human beings (fowers & richardson, ). people can be of high or low culture. they can straddle two cultures, go back to or come from their cultures, or even have no culture. multiculturalism is, to many, “alive and well”. our everyday existence is filled with culture and yet it remains a term that is poorly understood. even within cultural-anthropology and -psychology scholarship, there are different conceptualizations of the term culture (geertz, ; mead, ). one prominent definition of culture is as “the system of shared beliefs, values, customs, behaviors, and artifacts that the members of a society use to cope with their world and with one another, and which is transmitted from generation to generation through learning” (bates & plog, , p. ). this definition emphasizes the element of culture as shared meaning or implicit rules that govern behaviour. other definitions seem to focus on culture‟s role in differentiating us from them (hofstede, ). adding to the confusion are contemporary scholars‟ debates about the similarities and differences between culture and related constructs such as race and ethnicity (american psychological association, ; helms & talleyrand, ; phinney, ). the plurality of definitions as well as some authors‟ disregard for explicitly defining culture or discussing culture in ways that are inconsistent with their stated definition can cause significant confusions. given the centrality of culture within this research inquiry, i believe that it is essential for me to make sense of my own conception of culture. this task entails clarifying where i stand on two ongoing discussions within the scholarship of culture (chang, ). one discussion revolves around the question, “is culture physical and tangible?” a second and perhaps more fascinating discussion involves whether culture is located inside the person or “out there”. the second discussion relates to, though is not entirely synonymous with, the question “is culture shared or personal?” admittedly, like my ebbing and flowing research inquiry, my understanding of culture has evolved over time. in deconstructing culture for this thesis, i became aware of its central role in all facets of my experience. a number of self-reflection questions that i used in my data analysis prompted me to recognize how simple processes – from decisions about the research, perceptions in the field and reactions to conversations – are shaped by my cultural location. i am not just a tabula rasa or blank slate on which sensory experiences are etched, unaltered. it quickly became apparent that the debates and analyses about culture are not merely the concerns of theoreticians in the ivory towers of academia. they have significant real world implications also. take for example the statement, “i come from a culture where…” which i overheard while at a recent multicultural psychology conference. on the one hand, for an individual of african heritage who perceives culture to be an identity that one is born into, he appendix c is an excerpt that describes my understanding of culture two years ago. refer to chapter . data analysis for a more extensive description. may enact life in a way that is consistent with cultural stereotypes of stupid, criminal and subordinate (steele, spencer & aronson, ). on the other hand, for another person who perceives culture to be a group membership in which one chooses to participate in, then she may feel more freedom to oppose negative cultural stereotypes. in trying to formulate a definition, i find myself thinking about what culture is not. to me, culture is not a physical object, a group of people or a geographical space. consequently, i believe that culture can neither be physically pointed nor defined by drawing some boundaries around a set of people or a place. these assertions seem to be intuitively true from the way people colloquially uses the word. it seems somewhat simplistic to refer to a carving or tree as culture itself. it seems more accurate to say that culture includes the artistic techniques used to make the carving or stories about the tree. similarly, culture seems to be more than just a group of people who share traits or backgrounds. the people themselves are not the culture the way the attendees at a conference or inhabitants of a remote village are not culture. thus, culture is neither a tangible object nor a group of people that one can point to, but rather the shared collection of knowledge, value and belief systems, practices and traditions that are applied to those objects or by a group of people. following on this reasoning, the geographical space in which people occupy is not culture. nevertheless, the association between geopolitical regions and culture is ubiquitous. for example, consider the ongoing use and abuse of the rather reductionistic binary of western and eastern cultures in both popular and scholarly discourse (chua, ; cohen, ). most audiences would (perhaps incorrectly) assume that a speaker is referring to the practices or beliefs held by people who inhabit that region of the world. yet, the very use of geographical descriptors (e.g., western, asian) seems to suggest something entirely physical. if by asian, we actually mean a collection of practices such as eating in ways consistent with feng shui principles or values such as confucian ideals of filial piety, why do we not merely state it as such? in not doing so (i.e. to use cultural contractions such as asian or western), i believe that we reduce very complex constructs into simple ones, supporting over-generalizations and cultural stereotypes. the definition of culture that is emerging at this point seems to be consistent with the mainstream multiculturalism orthodoxy. what remains is perhaps the more interesting consideration of where the self is located within or in relation to culture. in other words, “is culture inside a person or out there?” moreover, “is culture personal or shared?” in order to grasp these questions, i found myself reflecting on my observations of how certain people tend to fulfill their cultural stereotypes while others shed or ignore them. what appears to be at the heart of these different behaviours is the notion that culture is something one can have membership, in the way i might have memberships to an exercise gym or political organization. i choose to participate in a gym or belong to a political organization. as such, i tacitly endorse the opinions or philosophies of the organization, such as in valuing socialist policies or ecological sustainability. i find this idea of membership in culture incredibly appealing. it reflects the agency that every individual has in creating their personal cultural identity. as such, individuals may express membership in a culture but not participate actively in it or may display their cultural affiliation in different ways. consider my cultural identity. although i consider myself to be of chinese culture, i did not actively participate in lunar new year and do not regularly consume chinese media. instead, i experience my identity in my feeling a greater urge to connect with patients who are of chinese ethnicity or greater sorrow in relating to the struggles of a adolescent caregiver of chinese ethnicity. i imagine that if i was situated in a different cultural location, my reactions to these encounters would have been very different. the notion of having membership in culture also recognizes the power that individuals possess in foreclosing their affiliation in a culture (berry, phinney, sam, & vedder, ), or having membership in multiple cultures (cole, ). as such, one‟s cultural identity is best viewed as being fluid or temporal rather than born into and permanent. i find this dynamic image quite appealing as it reflects of my own experiences as an active agent in constantly negotiating and defining my multiple cultural identities. as an immigrant, born in china, grown up in eastern canada and now living in vancouver, i have participated in and withdrawn membership from a number of cultures. at times, i have had to reconcile the conflicting messages that i receive from cultures to which i have membership. in these confusing moments, i find my relationship to these cultures change. i distance myself from one culture while affiliating more closely with another. this often happens with my membership in the graduate student culture. when i walk into a seminar, i affiliate with that culture, ready to learn, take notes and think critically about the material. when i am engaged in my clinical practice, i distance myself from that culture. i behave differently, dress differently and engage in different conversations. this illustrates how my membership in the multiple cultures that forms my cultural identity fluctuates from moment to moment. therefore, in response to the question of whether culture is within a person or out there, i believe the most accurate answer is both. my relationship with any of multiple cultures is fluid. it is out there in the sense that i do not participate in certain practices and traditions, or possess the creation of a “culture-gram” is suggested by chang ( ) as an exercise of self-exploration to better locate oneself in an autoethnographic inquiry. my own culture-gram is included as appendix d. certain belief and value systems. at any moment though, i may take membership in a culture, in which case, it would be part of me at that moment. from this, we turn to the question, “is culture shared or personal?” the likely response of most scholars would be that culture is shared. the established orthodoxy is that culture – the collection of practices, traditions, belief and value systems, etc. – is transmitted from parents to children and within communities that perceive members of that community to share certain commonalities or worldviews. from these assumptions, it would follow that “there is no such thing as culture of one” (chang, ). from my deconstruction of culture in my life as well as others, i find my views diverging from this established orthodoxy. it seems to me that although we all perceive culture to be shared and even communicate using language that is consistent with this belief, culture is in fact personal and necessarily so. this conclusion follows from my discovery of and resonance with post-modernist thinking, which in essence problematizes the notion that there exists an objective truth. within this framework, the realities that each of us experiences is necessarily subjective. i receive sensory inputs that are filtered by the lens that i wear; therefore, what i experience as reality is different from what another person experiences. moreover, what we may all perceive is a shared culture is no more than a representation of that culture through our individual lens. taken one step further, our definition of a given culture is subjectively defined. consider the example of two siblings of indigenous ancestry. both may self-identify as being members of their indigenous culture and yet perceive very differently what it means to have membership in that culture. one sibling may associate his cultural membership with eating a traditional indigenous diet, while the other may focus more on the endorsement of familial values while not really caring for the traditional diet. more personally, i find myself often in discussions where the term “chinese culture” is casually referenced. during these discussions, there exists a tacit assumption and agreement amongst discussants about the meaning of the term chinese culture. although we carry on these conversations without any problems, i would imagine that if anyone were to question our understanding of chinese culture membership, a plethora of (potentially conflicting) viewpoints would emerge. as a first generation chinese canadian who grew up in a predominantly caucasian community in eastern canada, my understanding of chinese culture would probably be very different from another first generation chinese canadian who grew up on the west coast. the same distinction could be made with two people of the same community or even the same family. if such divergent viewpoints exist within a presumably homogeneous group, i can only imagine the impossibility of arriving at some consensus about what it means to be a member of a given culture. understood in this way, culture is not some monolithic construct that exists “out there”, independent of people. rather, cultures exist within every individual, constructed by that individual. in essence, our membership is to an organization of one, and when we withdraw our membership, that organization ceases to be. in spite of such plural realities, we all continue to collude in maintaining this fallacy of culture as shared. we communicate using language that is consistent with this fallacy. perhaps, it is our social nature, our desire for a sense of connection and belonging. perhaps, it is out of a perceived necessity. we act as if we share a semantic framework so that we are able to communicate with each other sensibly. whatever our reason for maintaining this collusion, i believe it is important to acknowledge its implications. having a shared semantic framework does seem to provide a sense of security and order in our communications with another. at the same time, i noticed that assuming a shared culture can limit my curiosity and humility towards the other; and in turn, lead to misunderstandings. i noticed this in my interactions with people of chinese ethnicity, as well as between hcps and their patients. the assumption of shared culture can therefore be a double edged sword. as such, i find it of practical value to view culture as individualistic. this conclusion compels me to not assume and to remain curious about another. when culture is individualistic, i must acknowledge that the person with whom i am communicating possesses a uniquely different reality, regardless of our use of similar terms. to summarize this extensive deconstruction of culture and how the self is located within it, i return to the three questions that began this section. is culture tangible? is culture located inside the person or out there? is culture shared or personal? in response to the first, my intuitive reasoning based on our colloquial use of the term leads me to understand culture as intangible. it is not the physical objects themselves that is culture but the practices, traditions, beliefs and values symbolically underlie them. in relating to cultures, they can exist either inside the person or out there. our membership (albeit a membership of one) is fluid, varying with experience and context. insofar as we define a given culture though, it is like our reality, necessarily personal. having established in this section a common semantic as i reflect on these conclusions, it strikes me how long it has taken both on paper and in my lifetime. i believe that this effort will not be wasted however as this understanding has for me and will for the readers help make sense of this research inquiry. framework about my own understanding of culture with the reader, i will later situate myself and my cultural identity relative to this research inquiry. in the chapter that follows, i will go more deeply into describing the theoretical and methodological frameworks that structure this research inquiry. i will also describe my interpretation of qualitative autoethnographic inquiry and its appropriateness in shedding light on the present research question. refer to chapter . . rationale for autoethnography. i must admit that this discussion of methodology will feel like a slight departure from the intimate, narrative voice that this thesis aspires to convey. given the inevitable pressures that come with being situated in an academic context, i feel obliged to lay out my arguments for the suitability of my methodological decisions using the distantly intellectual voice of established credibility. chapter stories will attempt to return to the more inviting and relatable tone of autoethnography. chapter : methodology this section will discuss the theoretical underpinnings of this research inquiry. i will describe the social constructivist lens with which this research has been conceived and will be interpreted. subsequently, i will describe the general data collection and analysis methods to be used. a rationale will be provided for the methodological decisions that have been made at the outset of this study. the section will conclude by considering the ethical concerns in engaging in this research project and using this particular methodology. . orienting worldview my worldview or the lens through which i interpret this research is based on the assumption that knowledge is a social construction; that is, what each person believes to be true is created out of a continual and reciprocal interaction between the person and his or her social context (geertz, ). what is true for one person or group may not be for another. this gives rise to the possibility of multiple, equally valid and coexisting realities (crick, ). this knowledge paradigm contrasts with the positivistic notion of a single universal reality that can be discovered through an objective and value-neutral inquiry. instead, social constructivism emphasizes subjectivity and agency. knowledge is thus co-constructed between the individual and society, and is experienced through the subjective lens of the individual. this self-oriented research inquiry acknowledges the legitimacy of multiple co-existing realities. in this thesis, i report on a single reality, my own, without suggesting that my interpretations are somehow legitimized through being presented in this written document or academic context. instead, i merely share my journey as an emerging health care provider with the hope of engaging readers in reflection about and becoming more aware of their own reality and cultural practices. the ultimate goal is in being able to provide more effective, more culturally sensitive health care to immigrants and young adults with cancer. . auto/ethno/graphic inquiry my inquiry adopted a qualitatively-oriented, autoethnographic approach to data collection. ethnographic inquiry is a multimodal qualitative research approach that is rooted in sociology and cultural anthropology. ethnography (from the greek word “ethnos” meaning other people, group or race) refers to the “first-hand empirical investigation and […] interpretation of social organization and culture” (hammersley & atkinson, ). classical ethnographers would often spend months or years deeply immersed in a foreign geographical milieu. during this extended period of time in the field, the ethnographer would be engaged in the lives of those being studied, documenting and interpreting their distinct way of life, values and belief systems, and underlying worldviews. the ultimate goal would be to construct an “emic” or insider‟s account of a culture acknowledging the social, physical and political contexts in which it exists (pike, ). ethnography draws its data primarily from the fieldwork experience of the researcher. a multimodal approach to data collection is used, including keeping detailed field notes, conducting interviews, collecting artefacts and writings, engaging in direct and indirect observations, all characterized by prolonged immersion in the environment of study. ethnography endeavours to gain a better understanding of the common experiences shared by and influences on a culture and to portray them as accurately as possible. the self-oriented (i.e., autoethnographic) nature of this inquiry will be described in more detail in the following section. my research focus has evolved over the course of this research journey. my initial interest was in exploring the psychosocial experiences of cancer patients of chinese ethnicity. iterative refinements have included the expansion of the population to immigrants and the inclusion of the young adult culture. my early data collection was driven by the question, “what are the psychosocial experiences of immigrant young adults with cancer?” i began to accumulate data in the form of conversations with patients and care providers, research studies, theoretical papers and policy documents. as i did so, i began to notice that much of my findings simply reaffirmed the conclusions or stereotypes i gained from my prior review of the literature. i became increasingly disinterested in and decreasingly surprised by the data. in spite of my “heightened understanding”, what continued to nag me was a “so what?” sort of question. “where and how i fit into this care system?” the data was directed at, for the benefit of and could inform someone else. not me. i was the student, the researcher, the aspiring (but not yet) care professional. i did not have membership with this culture of cancer care. over this period, i increasingly reflected on my own experience of this research process. i realized that the question that was important to me was “how do i understand my role as an emerging health care provider for immigrant and young adults with cancer?” in order to answer my initial research idea was described in a scholarship application, which is included in the appendix. the decision to focus on the experiences of immigrants rather than people of chinese ethnicity was motivated by my recognition that culture ought to be defined according to experience rather than geographical or geopolitical regions. refer to chapter . for an expanded discussion of culture. young adulthood (arnett, ) emerged from my review of the cancer care literature as well as my own experience as a challenging transitional life stage that is often overlooked. this question, i had to turn the research microscope on myself. in doing so, my ethnographic inquiry became an autoethnographic inquiry. what constitutes an autoethnography remains unclear and contested. this term is often used synonymously with other forms of self-exploration like autobiographies, memoirs, recollections, personal journals and stories (charmaz, ). at its core, autoethnography is a research inquiry into oneself. through it, one gains a better understanding of the cultural context in which one‟s life is situated. whether such an understanding is meant to represent a wider social culture has been an issue of scholarly contention as well (hunt & junco, ). anderson ( ) considers autoethnography as having five key features: complete member researcher status, analytic reflexivity, narrative visibility of the researcher‟s self, dialogue with informants beyond the self and commitment to theoretical analysis. complete member researcher status refers to the requirement for the researcher to be a member of the social world in which she or he is studying; that is, only those who have experienced cancer themselves may engage in an autoethnographic inquiry about the experience of cancer. this allows for a different and arguably more intimate understanding of the experience or cultural context than what could be discovered by a cultural outsider. in this way, the autoethnographer occupies the dual role of the observer and participant in the truest sense. some scholars argue that what follows from this insider membership is an obligation to analytic reflexivity (anderson, ; wolcott, ). analytic reflexivity is the process of inferring from the personal and self-observant experiences to the larger social world in which the researcher belongs. anderson refers to this as a “[rising] above idiographic particularity to address broader theoretical issues” (p. ). scholarly debate continues on this point however. acknowledging a somewhat more post-modern take, ellis ( ) contends that the primary goal of autoethnography ought to be to accurately represent the researcher‟s emotional experiences, not to generalize. such a commitment to emotional fidelity would compel readers to journey alongside rather than analyze at a distance. as clandinin and connelly ( ) notes that reading others‟ self-narratives can evoke self-reflection and self-examination. given my own resonance with post-modern subjectivity, i aligned this thesis more so with the latter evocative autoethnographic approach. . . rationale for adopting a qualitative ethnographic approach. this research is discovery-oriented. although many of the premises are drawn from the literature, i tried to remain relatively unconstrained by preconceptions. the aim was not to validate or disprove a particular theory, nor is any one particular theory used as framework to guide data collection or interpret the data collected. the phenomenon of experiencing a life- threatening medical condition while transitioning from one culture to another is very poorly understood. i therefore engaged in this inquiry with an open ear and mind. camic and colleagues ( ) perceive the fundamental goal of qualitative researchers as endeavouring to understand the lived experiences and the meanings attributed to those experiences. these experiences are embedded in an individual‟s circumstances, and can only be understood when considered in the context of the individual‟s family, community and society. such understanding cannot be gained through traditional hypothetic-deductive models of knowledge discovery. rather than creating highly controlled, distally approximate experimental settings (hammersley, ), this research will be grounded in my own world experiences in engaging with people, events and places at the intersection of immigrant, young adult and cancer cultures. amongst the various qualitative research methods, the ethnographic approach seems especially well-suited to answer the current research questions. qualitative research with vulnerable populations such as iya with cancer can be challenging, especially when studying illness. trust for the researcher is an integral component to gaining full cooperation of the iya in research participation (broome & richards, ). without having established a trusting relationship, participants may be reluctant to share their sensitive and private experiences of cultural transition and illness. ethnographers, by their prolonged immersion in the research context, are afforded the opportunity to develop a trusting relationship with the iya. indeed, camic and colleagues ( ) suggested that, because youth may be suspicious of or unfamiliar with the nature of qualitative research, researchers would do well to meet with participants on many occasions and to employ non-interview based data collection methods. ethnographic inquiry‟s multimodal approach to data collection also substantially reduces the linguistic demands of participants as compared to interview-reliant qualitative research methods. while expressing the subtleties of lived experiences would be difficult for anyone, the difficulty is of particular concern amongst individuals whose first language is not english. rather than extrapolating from conversations, ethnographers may collectively interpret data gathered through directly observing and participating in the experience being studied to arrive at a more content valid account of the lives of the participants (mathison, ). moreover, to neglect would be to ignore the complex relationships between peoples‟ attitudes and behaviours (hammersley, ). where discrepancies exist, ethnographers are able to follow up to obtain clarification. for these reasons, suárez-orozco and suárez-orozco ( ) argue that an ethnographic approach is best suited for research with immigrants. additionally, ethnographic inquiry engages a participant‟s whole social context. in order to ensure comprehensiveness and encourage a more reflexive analysis of the data, ethnographers often converse with family members, friends and peers (kelly, pearce, & mulhall, ). for iyas with cancer, caregivers and health professionals may also contribute valuable contextualizing information. by collecting data using multiple methods and from multiple sources, autoethnographers are able to collectively interpret the data in order to gain a more contextualized understanding of their own experiences. rather than being bound by a linear research protocol, ethnographic inquiry employs an emergent research design that is responsive to ever-changing circumstances, and the demands of the study and its participants. instead of being bound by a particular research topic or set of questions, the ethnographer is able to consider what is currently uncovered and refocus and refine subsequent lines of inquiry. these features provide a means for the research inquiry to be responsive to what is most pertinent to me in considering the research question. . . rationale for autoethnography. the self-focused, autoethnographic approach to research is especially well-suited to this inquiry for a number of reasons. that said, i will make no effort to pretend that this was a carefully made decision at the outset of my journey. it became well-suited out of necessity, not academic argument. although a narrative account of how my journey turned inward is outside the scope of this section , i want to comment on the value of the autoethnographic approach to research, especially as it relates to my profession of counselling psychology. autoethnography is quite unique as an emerging investigative approach in academia and research. in contrast to traditional-positivistic approaches to research that aims to dismiss the researcher‟s role and influence on the research process, autoethnography puts the researcher front and centre; it acknowledges the researcher as the tool, decision maker and subject of the research process. this thesis does not try to hide the imperfection (or more accurately cultural refer to chapter . . turning inward. location) in which all research is generated. in laying out every aspect of my research process for you, the reader, i make it available to be examined, and endorsed or rejected for its appropriateness to your own circumstance. moreover, as i became increasingly preoccupied and curious about my own place and role as a health care provider (hcp), autoethnography emerged as a valuable methodological framework for examining my experiences. its emphasis on reflexivity, or the researcher‟s own influence on the research process, served as a way to make sense of how i perceive my current role of hcp in light of my past experiences. i resonate with the notion of reflexivity in research as it parallels a fundamental commitment in the profession of counselling psychology to self- awareness. a central tenant of counselling is that in order to help others gain insight into their lives, we must first do so for ourselves. gaining a greater self-awareness becomes almost an ethical obligation as it informs the way my practice. such knowledge allows me to note how my actions and reactions are influenced by my own experiences over that which exists between the client and me. like with reflexivity in research, the aim of exposing these influences ought not be to separate it out from the process; rather, an increased insight can greatly inform the process. . . situating myself. i myself am situated in a social and historical context which has profoundly influenced my experience of the world. the decisions that i make in conceiving this research as well as my interpretation of the data are inevitably filtered by my worldview. as such, i will situate myself in this research process so that readers may more accurately understand why certain decisions or interpretations may have been made. refer to appendix d: culture-gram for a pictorial illustration of my multiple cultural identities. my worldview is significantly influenced by my experiences as a chinese-born immigrant to canada. having immigrated to canada from china with my parents as a child, i have experienced the challenges of adjusting to a new socio-cultural milieu and integrating different, often conflicting sets of values and worldviews. i have witnessed my parents‟ socio- cultural and financial struggles having left the safety and support of an extended family, and having given up decent careers for tiring, low-paying jobs that they were overqualified for. their long hours away from home created an environment where i had to grow up quickly and learn many things on my own. over the course of growing up in canada, i have realized many of the benefits and opportunities that this country has to offer. in meeting others who are newly arriving in canada, i feel both awe and despair in recognizing the struggles that many must face and the untold sacrifices that they have made and continue to make. as a graduate student and aspiring counselling psychologist, i hope to be able to support and advocate for individuals who struggle in their transition to a new country. moreover, i hope to be able to help people identify and strengthen the support systems that exist within their families and social networks. within this ethnographic inquiry, i hope that my research efforts and the obtained findings will sensitize and inform mental health and medical practitioners, as well as informal care providers of the often unspoken struggles of immigrants with cancer. as a researcher who has experienced or witnessed some of the major life transitions that i endeavour to better understand, i bring to this inquiry my own assumptions about what it has meant for me to be an immigrant, a young adult and a care provider for cancer patients. rather than denying my own reality, i endeavour to acknowledge it throughout the research process. . collecting data i employed a multimodal approach to better understand my role as an emerging health care provider to immigrants and young adults with cancer. over the course of eight months, i adopted a number of different roles related to cancer care and drew on a multitude of different data collection methods. the multiple data sources serve as the basis for triangulating and therefore validating self-reflexive data. moreover, the eight month period spent in the field gave me a chance to monitor what were some very interesting changes to my understanding of the hcp role and how i fit into it. the following sections describe these roles and methods. . . roles. i took on a number of different roles through this research inquiry, including as a researcher, a volunteer, a student and a colleague. together, these roles afforded me a chance to understand what it means to be a hcp and my relationship to it from different vantage points. most saliently, i began this journey as a social science researcher. this entailed coalescing my lived experiences and interests into a research question, formulating a research proposal, obtaining ethics board approval, forming partnerships with members of the community and institutional gatekeepers, engaging with participants, applying for funding and more. this intricate and often arduous process began nearly four years ago in beginning my graduate studies and has provided no shortage of moments of reflection. refer to appendix i: data log. i also visited the main cancer care centre on a weekly basis as a volunteer in the chemotherapy and inpatient wards. my time there was spent chiefly offering companionship to patients and family members, liaising with the centre‟s staff and supporting volunteer events. in order to take on this role, i was required to attend several training workshops. one workshop in particular was very thought provoking as it challenged me to examine my conception of death. other challenges came in my perpetual struggle to separate my inert volunteer role with the multiple other roles that i adopted. this was reflected on at length in several of my experiences. i also participated in a four month course on interprofessional psychosocial oncology. my classmates were from a variety of disciples (including social work, nursing and counselling psychology) were at different stages of their career and lived all across canada. the course consisted of readings, individual and group assignments and a weekly online discussion on topics in the area of psychosocial oncology. the course facilitator would press us to consider how professionals with different disciplinary expertise could collaboratively provide the most effective care possible to patients and their family. as an ongoing role, i continue to engage in my clinical training as a master‟s student in the counselling psychology program. throughout the research process, i have been working at two practicum sites that have allowed me a valuable opportunity to make sense of my role as a mental health service provider outside of a cancer care setting. additionally, my colleagues in the program served as a valuable platform for discussing and making sense of my thought processes over the course of data collection. unless specifically asked about, i did not bring up my research project for discussion. i felt that, in my role as a volunteer, this would have inappropriately focused the conversation on me rather than the patient. although i was mostly able to negotiate these multiple roles during my volunteer time, i did sometimes struggle. . . methods and sources of data collection. compounded upon the roles that i adopted, i also collected data in a multitude of different methods. multiple data sources serve as the basis for triangulating and therefore validating self-reflexive data (chang, , mathison, ) the data sources can be divided into two broad categories, outward focused methods (e.g., interviews, observations, reviewing the literature as well as other textual and non-textual artefacts) and inward focused methods (e.g., self-observations and self-analyses through journaling, creating a personal culture gram and reviewing personal memories). both inward and outward focused methods were used in this research. formal hour long interviews were conducted with five health care professionals (including counsellors, social workers and a practice leader), one volunteer coordinator, one immigrant young adult with cancer and one family member. i met with some participants on multiple occasions. all of these formal interviews were both semi-structured, being guided by a defined set of topics and questions – so that discussions can be focused – while allowing participants the flexibility to talk about any topic in depth. hunches and realizations from prior experiences informed the focus of subsequent discussions in a continuously self-refining way. a review of research in the domain of immigrants, young adults and cancer identified a non-exhaustive list of potential topics for discussion, including relationships with family and friends; home, school and work environments; coping with stressors and transitions as a young adult, immigrant or cancer patient; interpersonal dynamics in medical management (kim, sherman, & taylor, ; liu, mok, & wong, ; rich, lamola, gordon, & chalfen, ; refer to appendix j and k: interview questions zebrack, bleyer, albritton, medearis, & tang, ). as the research focus turned from the experience of patients to my own as an emerging health care provider, a parallel change occurred in the questions that i asked. in interviewing health care professionals, i became more interested in their own struggles, challenges and satisfactions in providing care to immigrants and young adults with cancer. as pointed out by chang ( ), interviews with others in autoethnography “provide external data that give contextual information to confirm, complement, or reject introspectively generated data” (p. ). observations were mostly recorded during weekly visits to the cancer agency as a volunteer. as my autoethnographic inquiry proceeded, it became very apparent that opportunities to examine my role as health care provider was being prompted by all types of circumstances. i soon began to treat each moment of my life as a chance to reframe my experience in the context of my research question. i no longer distinguished when i was in the field and when i left it. as such, i recorded observations during meetings with participants, at conferences, after impactful moments or conversations and in a number of other circumstances. i noted the physical environment, the people present, significant interactions and dialogue. particular attention was paid to my own sensual experiences and emotional reactions, such as the sights and sounds of an outpatient chemotherapy waiting area or my despair or rage in a particular patient interaction. during observations, i assumed a participant-observer role. this dual role presupposes that it is impossible to detach oneself as an inconspicuous observer who is able to withhold one‟s own biases and worldviews (davies, ). what is more, such disengagement may hinder the researcher-participant rapport and thus prevents the researcher from gaining an emic perspective of the experiences of the participant (hammersley & atkinson, ). conversely, it would be refer to appendix b: literature review. foolish to assume that i may through mere effort blend in seamlessly as a full participant in their lives. it is difficult to be a participant in the same way that it is difficult for a therapist to be a friend. at the end of the day, both the researcher and therapist have fiduciary responsibilities that a participant and friend do not. “going native” also becomes problematic because it makes more difficult the task of distinguishing personal interests from research interests. given these considerations, i assumed a participant-observer role, which according to davies ( ) necessitates a critically reflexive mindset. reflexivity in this study will involve maintaining detailed records of my fieldwork, taking field notes and creating time while away from the field to reflect on my notes. a commitment to the participant-observer role was very important to me. given that note taking is often out of context and would have disrupted the natural interactions of people, it was often necessary for me to first make mental notes. when circumstances allowed (e.g., after an engaging conversation with a patient while volunteering, in securing a seat on a long bus ride), i would find a quiet refuge and make some brief written or verbal notes. once home, i would transcribe and expand upon these notes into longer narratives. the usage of present tense in these expanded narratives denoted my reliving of each significant moment while engaging in this writing. each of these note taking steps allowed me to insert into the narrative my meta- commentary (e.g., reactions, hunches, realizations) and in turn progressively deepen my reflexive analysis. in addition to observations, i collected and reviewed textual and non-textual artefacts. i dug back into my archives and found my graduate school admission statement of intention, scholarship applications and numerous self-reflection papers. i amassed a mountain of publications from the cancer agency and training workshops, relevant research papers and radio broadcasts. i took pictures of scenes that were especially meaningful while volunteering, completing errands, exercising along the beach. although many of these artefacts have not been created by or about me (as would be the traditional role of artefacts in autoethnographic studies), i found them particularly striking in their content, their location, their intended use as they pertain to cancer care provision. i considered my reactions to these artefacts as reflecting my worldview and cultural location as well as being reflective of how a cancer patient or family member may respond to them. . data analysis the research question that guided my analysis was “how do i come to understand my role as an emerging hcp for immigrants and young adults with cancer?” in considering the personal nature of the inquiry, i will acknowledge at the outset that my inquiry has been an entirely selfish one. as such, the primary goal of data analysis was to provide a mechanism for my own reflexive analysis. although this process aided me in identifying certain important ideas that i would discuss further in the narratives of chapter : stories (e.g., the experience of interpersonal divides or a desire for normalcy), i found that the ideas that carried greatest valence for me came from the single conversations with a colleague or encounters at the cancer agency. in light of this theoretical posturing, i do not aspire (as other inquiries may) to achieve a level of description that enables reproducibility. in fact, reproducibility would have been difficult to achieve for a number of reasons. the greatest challenge i experienced through data analysis was in accommodating the large volume and variety of data collected while in the field and this may be a viewed as a divergence from more phenomenological or grounded theory inquiries that endeavour to distil research data down to essentials or universals. through reflecting and journaling. i tried to lay out a defined protocol for data analysis at the outset, but given the emergent nature of the research inquiry, the protocol was difficult to adhere to. i found myself constantly having to revise the protocol to accommodate a new source of data or feeling paralyzed in not wanting to engage in analysis or further reflection for fear of having to alter the protocol. very quickly, the task of organizing and analyzing the many diverse sources and forms of data became overwhelming. in the end, rather than a single systematic plan, a number of evolving plans were implemented for data management and analysis. some general principles were established. for example, i labelled each piece of data with a title, location and date; used a folder system to organize different sources of data; created regular and separate entries for each significant encounter or conversation; and literally bracketed self-reflections from observations in my field notes. the qualitative data analysis software package atlas.ti was used to centrally store the data, including all field notes, reflections and research articles. where possible, printed or hardcopy materials such as pamphlets and brochures were digitized. otherwise, a brief journal entry was used in its place. using the coding functionality of atlas.ti, i made at least one complete pass of all the data. in the first pass, i quickly coded each meaningful passages, aiming for maximum coding density. labels (e.g., “hope”, “burden on caregivers”, “normalcy”) were liberally created in order to begin the process of clustering codes of similar meaning. as i proceeded through the first pass, i periodically reviewed the codes, the labels that the codes were assigned to and the internal the attempt at bracketing my own reflections from the observations in the field was difficult as the distinction between what is observed and what i contribute to an observation is oftentimes unclear. even a description as seemingly objective as “he was tired” may be argued to be my own interpretation of an event. consistency of these labels. this prompted me to constantly decide whether to create a new label, merge similar labels (e.g., “despair” and “depression”) or delete redundant labels (e.g., “compressed time”, “sense of time”). this process roughly follows what glaser and strauss ( ) describes as the constant comparative method. as interpreted by hammersley and atkinson ( ), each passage of data coded in a particular label is examined for similarities with and differences from other passage in that same label. it is possible and likely that the codes that are used to organize and categorize the data in the early stages may become refined or changed in light of new data. vaguely defined labels may become increasingly precise and descriptively rich. new labels may emerge. this necessitates frequent re-readings of the data to look for new instances of the emerging labels. a second and third pass of the data served to reduce the coding density, leaving only the most informative passages and labels. some pieces of data were overlooked in this process given that it was immediately obvious that they did not add any value to my analysis. given that data collection, management and analysis occurred concomitantly, new data was constantly being added to the analysis. this posed a challenge as it frequently prompted me to re-examine my existing label system, and at times return to and revise already coded passages. . . questions for reflexive analysis. not to be lost in this process of coding, i had to repeatedly remind myself that what was important was to engage in reflexive analysis. this would allow me to better understand my the constant comparative technique herein described is most commonly often associated with the grounded theory method (gtm; larossa, ). gtm, originally developed by glaser and strauss ( ), aims to construct an explanatory theory of a human phenomenon grounded in the data. as a divergence from the grand ambitions of most studies that employ gtm, i am taking advantage of the constant comparative technique to role as an emerging hcp as well as connect the cultural factors that situate these realizations. a number of questions were generated to spur this reflexive analysis.  what from my own experiences, biases, worldviews could be influencing my perception of this research encounter or interpretation of this data?  what might i not see/understand as a result of my cultural membership?  what do my own reactions to this situation say about my cultural membership? how would this interaction be different if my cultural membership were different?  how might the other person‟s cultural membership be affecting our current encounter or his/her perception of me? how does this person perceive my cultural membership?  what is the significance of this [observation/interpretation] as it relates to [people/culture/my research question]?  in what way does my new awareness of my identity help to bring into focus the relationship between the researcher and [others in similar situations]? these questions serve a number of functions. they provide a framework for creating labels during the coding process (e.g., “culture clash”, “culture shared”, “medical culture”). more importantly, it guides my reflexive journal entries. in reading through an observation or listening to an interview, i regularly referred to these questions to help me reflect on my cultural membership. in coming across a particularly meaningful passage, i would create a new journal entry to reflect on this realization. construct a coherent personal theory, one that explain how i fit in as a hcp for immigrants and young adults. another point of divergence is that this analysis focuses less of an emphasis on the codes, nodes or themes that emerge. the codes more accurately serve as tools for my reflexive analysis. chapter : stories . directions emerging . . arriving. it was evening after i received the phone call from dad that i touched down in washington dulles airport. my cousin charlie met me. the drive from the airport was markedly cheerless, contrasting sharply the holiday festivities and cheer that seemed to reach even into the security-screened, border-protected regions of a major us airport. i tried to make small talk but the words seemed effortful. we don‟t do a great job staying in contact in my family. it has been more than ten years since we last spoke. we were visiting him and nímāmā during a summer family road trip. i was eight. he was . it was a carefree time. how things have changed. “do you need anything?” he asks. yeah, my holidays back, i think. “no,” i answer. i have no idea where we are going. twenty-four hours after receiving my orders, i am still dumbstruck by my circumstances. i have been thrust into this mission and everybody seems to know what i‟m doing except me. i wonder why i am here, or perhaps why it is me that is here. the highway sign overhead said baltimore. as we approached the city, i saw a large sports stadium. we passed the waterfront. it was humming with activities and lights. there was a large boat completely lit up. my cousin noted that it is permanently docked, serving as a restaurant. i feel a momentary rush of excitement and intrigue. i picture a packed and boisterous stadium, a floating restaurant full of excited tourists. i would explore each of these sites if i were visiting here. but i‟m not, reminds a voice inside. my reverence immediately vanishes. no, i‟m not here to visit, i say to myself. what am i here for? i wonder. i have no answers to that question. we pass through the downtown and head straight to the hospital. i feel my heart start to beat faster, the way a performer recognizes that it‟s coming up on his turn. i begin to prepare. how am i to address her? in english or mandarin? am i even going to be able to recognize her? i feel so unprepared. what am i doing here? i wonder again. my cousin leads me out of the parkade and into the hospital. i can tell it‟s a prestigious hospital. we pass grand lobbies, stylish décor, glistening floors. up a flight of stairs, into an elevator. out the elevator and to the left. i try to remember the route. . . strangers meeting. the first thing i notice is the hospital cap that covers her head. she is sitting in her bed, pillows propping her up. even though she is covered by the gown and bed sheets, i can tell that she is weak. her face is emaciated, but i recognize it as belonging to my aunt from the brief visit when i was eight, from the black and white photos of her youth. she is wearing a gentle and exhausted smile, the way a parent welcomes a child home in the late hours of the night after an especially long day at school. image . personal photo from when i was eight. it is one of the only memories i had of nímāmā. “二姑姑你好,” i address her shyly. she feels like a stranger to me. i grew up, alongside many cousins in a flat owned by my grandmother. she, however, had left china to obtain her phd in the united states before i was born, so the only impressions i have of her are from pictures and from our trip more than ten years ago. she was indeed a stranger, a stranger with whom i was related by blood and would now be getting to know over the next number of weeks. “hello,” she gently greets in mandarin. “was the flight okay?” her words are soft, probably due to her exhaustion. my cousin stays for a while to chat. our conversation feels unusually distant, even between them. i wonder if it is due to my presence – this stranger who was only a pudgy little boy with a high pitched voice when they last saw him – or perhaps the distance is between them. regardless, i continue on in the conversation as best as i can. he eventually excuses himself to go home, needing to work the next day. i am prepared for this but it still comes as a blow. i‟m being thrust into ground zero, alone and without any forewarning or direction. i walk him out, taking a deep gulp of air. alright, now it‟s just me. it‟s time to perform. i try to suppress the anxiety that is growing inside me. . . adrift. i try to take in the room, this space which will be my base for the next many days. the space is large, almost overly so. there is a single bed in the middle with ample space all around. a curtain hangs overhead to give privacy when needed. there is a bathroom in the back of the room. a computer terminal is set up beside the door, a lazyboy across the room beside the window. ah, this will be my refuge for the days ahead. as i become visually acquainted with this space and with nímāmā‟s presence, i begin to feel more at ease and yet still just as confused. i feel adrift at sea, directionless, aimless, just bobbing, moving with the currents of the water. my only purpose: to wait it out. over the subsequent days, i spend much time sitting in the lazyboy and wandering the halls of the hospital. it is quiet except for the rhythmic beeps of the hospital equipment. while i sit and star off into space, my mind constantly drifts to the holiday festivities that i am missing in the world outside, the world that is leaving me behind. . . connections. nímāmā is a kind woman. i sense a sincerity and authenticity in the way she relates to me. she doesn‟t treat me like the little boy that she last met or the youngest of the cousins that everyone has to take care of. maybe it is because we never had the time to establish such a relationship. i am immensely relieved that this is the case. we talk about the progress of my studies, contemplate on what i want to do with my life, reminisce about the past. i feel respected rather than talked down to. i feel an easiness germinating in my body. how have i lived for so long without getting to know this beautiful person in my family? and now, it takes these circumstances to bring us together. a wave of disappointment hits me, then sadness, then shame. i have not been the good nephew that i should have. there is no mention of cancer in our conversations aside from her complaints of symptoms – lack of appetite, no energy, pain in her abdomen. perhaps she doesn‟t think i would understand. perhaps she doesn‟t want to bother me. perhaps she doesn‟t think that it would make any difference. regardless, we relate as though there is no such thing as cancer. we are just two long separated family members, brought together by happenstance, now compelled to get to know each other in this very strange setting. . . where do i belong? as the days pass, the setting becomes increasingly familiar. the lazyboy is more comfortable to sleep on than i thought, or maybe i am just getting used to the awkwardness of it. the chair has a lever that releases the leg support so that it easily converts into a makeshift bed. i‟m grateful for the setup but can‟t help but feel impatient by this stagnant existence. there is a pervasive gloom in the room, a heaviness that makes it hard to breathe, hard to think, hard to relax. the ward is practically empty and without stimulation. i feel confined, like an airplane passenger on a flight with no end in sight. every so often, i would stand up and walk around the room or do some push ups. i have so much nervous energy pent up without an outlet to expend it. and yet, when i sit back down, my mind often returns to nímāmā. i imagine myself in her shoes; or rather her hospital gown, her bed, her catheter, her feeding tubes. my thoughts juxtapose the despair of the current circumstances against the holiday cheer that i was missing. i imagine feeling impatient with the treatments, feeling angry with the circumstances, feeling left behind by life. my confinement all of a sudden seems so miniscule in comparison to her confinement. how selfish i am. i feel so guilty, so stupid. nímāmā seems to notice. she encourages me to head to the cafeteria for food. i try to dismiss her rather accurate interpretation. “that‟s okay. i can just grab something from the fridge.” it is stocked with snacks and juices. the selection is starting to become intolerable and i would much rather something else, and yet i feel uncomfortable, even guilty with the care that i am receiving. this isn‟t right, i think. i‟m not supposed to be the one being taken care of here. she insists. i give in, though not feeling entirely defeated. at least i made a stand. i let it be known that this focus on me is something that i am uneasy with. it is wrong. i leave the room behind and head off in search for the cafeteria feeling liberated and yet guilty at the same time. . . bearing it. i have done some exploring since i arrived. i have memorized the route from the parkade to our room, as well as a few detours in between. the way to the cafeteria, the library, chemotherapy ward. rather than take the elevator, i would opt of the stairs. sometimes, in reaching the bottom, i would climb all the way back up again, and then down, and then perhaps up again. i have so much energy built up in me that i am desperate to find an outlet for it. i feel frustrated with my confinement. i have come to discover that the ward itself is pretty humdrum. aside from us, there seems to be only one other family in this wing over these holidays. they are of asian heritage as well though we don‟t interact. why? i don‟t know. my cousin has come by a few times after work. we go out to pick up some groceries during one of his visits. he suggests a few things but i decide on some quick and dirty tv dinners. first time in my life with tv dinners. i scrutinize over the nutrition label of each box. god, i must be losing so much fitness these days. the thought reminds me of my confined predicament. i grind my teeth in resentment. a part of me fiercely tries to suppress this feeling. “this is your duty,” the part insists. “it is your duty to bear this discomfort for nímāmā.” the dinners don‟t taste all that bad. . . deep sleep. i am half awakened by some activity. my eyelids, glued shut by a welcomed deep sleep, takes great effort to pry open. it is dark except for a light in the distance. i feel a soft padding underneath me, a light sheet covering me. in my dazed and semi-conscious state, i realize that i am not at home. i am lying in my makeshift bed in a hospital room, nímāmā lying close by. our room door is open. light from the hallway is streaming in. we have visitors. nímāmā must have awoken in the night from some pain in her abdomen, some constriction in her breathing. the nurse is probably administering some medication, some intervention to ease her discomfort. it‟s a familiar routine. i don‟t make much of it. they‟ve got it handled, i assure myself. with that, i drift back to sleep, eager to find that welcomed deep sleep on this makeshift bed. . . misunderstandings. it is morning. sunlight is entering through the window and filling the room with a warm glow. it is a welcome juxtaposition to the sleepless night that nímāmā experienced. although i had slept comfortably, she was kept awake by abdominal pain that would not go away. she feels nauseous; the food does not appeal to her. a convoy of doctors enter the room. it must be time for their rounds. one takes the lead, while the others observe the conversation. “how are you this morning?” asks the senior doctor. “fine,” she answers dismissively. the doctor asks for permission to examine her abdomen. she consents by pushing aside the sheets that keep her warm. he leans in to feel around her stomach, perhaps feeling for changes to the masses growing inside her. he stands back, remarks a few things to his colleagues and returns to her. she notes that she doesn‟t have an appetite. he encourages her to do some walking if she is able to. he turns to me suggesting that i may be able to help her in this. i feel a rush of excitement in being included in the process, in being invited to help. he also discusses with her the plans ahead, wonders whether she feels up for heading home soon. a brief expression of horror flashes across her face. it occurs so quickly that none of the physicians know. “no, i think i would rather stay here for now, in case something happens,” she answers. the doctor tries to ease her worries, mentioning something about home care nurses. i follow this conversation from my lazyboy, an uneasiness growing inside me. there seems to have been a misunderstanding here. when she expressed concern about something happening, it wasn‟t so much in reference to abdominal pain and sleepless nights, but rather something else. he however has a very different framing of the situation and so concerns that are peripheral to the medical ones don‟t cross his mind. i want to speak up but i don‟t know where or even if i belong in this discussion. i wait eager to hear nímāmā clarify for herself. she does not. perhaps she really does perceive her worries about going home as medical. who am i to dispute it? i remain silent, watching, not sure what my role is in this. . . bear bear. christmas has arrived in our room. one could hardly tell the difference, it being as quiet as always. the only indication was a red and white christmas gift parcel that was delivered yesterday. in it, there were some beautiful flowers, a teddy bear and a card that was written by a local elementary school student. nímāmā felt uplifted by the kind gesture. she was touched. seeing her spirit somewhat raised, i feel tremendous gratitude for those who had gone through the trouble and effort of putting this parcel together. we read the card together with the youthful scribbles, appreciating the simplicity of the student‟s well wishes. i wonder if we should give the bear a name. nímāmā decides on 熊熊 (pronounced xióng xióng , translated as bear bear). we all agree that it is a fitting name, a playful name. the repeating of the word implies a close and fond relationship with someone that is one‟s junior. nímāmā holds the stuffed animal up in both of her hands, looks into its eyes. “xióng xióng.” and with that, she breathed life into the bear, a new companion in our hospital room fellowship. my cousin came early this morning as well. although there is none of the hoopla of christmas trees, lights, music and presents, it feels quite festive in our quiet hospital space. i notice how our conversation seems to flow. it is less restrained, less careful. we even manage a few laughs as we sat around the bed talking about the most frivolous things. we find a deck of cards and decide to play 争上游, an old game from childhood. we deal four piles, one laid in front of where xióng xióng sits, peering into the centre of the bed that has now become our makeshift card table. we play intensely, occasionally calling out to xióng xióng, wondering why (s)he is taking so long to lay down a card. i am struck by the levity of this moment, how grown adults – and especially nímāmā in her condition – are able to shed our shackles of adultly restraint and participate so playfully, so purely. i yearn for this sentiment to last. my cousin‟s cell phone suddenly rings. it stuns us for a moment. he answers it. it is our aunt, nímāmā‟s younger sister. the phone is passed to her. they talk. my cousin and i disperse, roaming around the room to keep ourselves occupied. the phone call ends. there is an uncomfortably long silence. i feel like a guest who has walked into a party conversation to find everyone remarkably quiet. where did that sentiment go? were we all just pretending, just constructing a wishful fantasy that does not exist? whatever it was, it has now gone, perhaps never to be found again. . . auld lang syne. it is new years eve. nímāmā and i left the hospital shortly after christmas and moved into my cousin‟s two bedroom apartment. although it might otherwise be spacious, it feels quite small with the entirety of nímāmā‟s belongs packed into boxes and stacked all around the apartment wherever there is space. my cousin and his partner are in one bedroom. nímāmā has been set up in the other bedroom across the way while i‟ve happily found the couch in the living room which faces one large screen tv with satellite programming. it is tuned to the new year‟s programming from time square. although i have never headed out to celebrate the new year, i have always gotten great delight in following the excitement on tv, seeing the horde of people gathered in nathan phillips square, times square and the many other celebration plazas around the world ringing in the new year. i feel a rush of excitement in connecting with this routine. i hear my cousin and his partner speaking loudly, perhaps arguing from inside their room. my cousin‟s partner suddenly storms out of the room. she yells loudly, clearly in the direction of nímāmā‟s room. nímāmā yells back from inside her room. i am stunned. my gentle and kind aunt has expressed a rage that i could never have imagined emanating from her weak body. her fury scares me. the two of them exchange more words across the room. my cousin‟s partner storms out of the apartment. my aunt, lying in bed in her room, continues to yell after her. she eventually stops. there is silence. i hear my heart pound. thump thump, thump thump… where is my cousin? he must still be in his room. i am afraid to go inside to check on him. i‟m afraid of the state that i will find him in. nímāmā probably also needs her own space right now, i assure myself. i choose inaction. i choose to stay out in the living room, partly because i can‟t do anything else. my body is paralyzed. on the television, the camera is focused on the ball in times square. it begins to drift ever downward. the crowd counts down, “…four, three, two, one…” then cheers, fireworks, confetti everywhere. the new year song, auld lang syne. and then, i hear another sound. a sob. no, a weep, coming from nímāmā‟s room. her weeping becomes a shrilling wail. it is deafening to my psyche. i am overcome by it. i begin to shiver. i shiver in despair, a despair that penetrates to my emotional core. all i can hear now is my aunt nímāmā, her wail from her bedroom. in the background is the sound of the millions of revellers in times square singing in unison. i hear them both now. “♪♪ should old acquaintance be forgot, and never brought to mind? should old acquaintance be forgot, and old lang syne?” (english translation; burns, ). happy . . . evolving questions. these events have been etched permanently in my mind and have left lasting impressions. in those moments of tension, despair and suffering, i felt frustrated with myself because i did not know what i could say or do to relieve my aunt‟s emotional pain. i was paralyzed, with neither the direction nor wherewithal to make the situation better. i could only watch. i realized how unprepared i was to take on this immense and complex role of care provider. looking back today, i feel a heavy regret. i often reflect on how it could have been different, how i could have been more useful. from these preoccupations arose my interest in understanding the experience of minority populations living with cancer. when the time came to proposing a research topic at the beginning of my studies in counselling psychology, i felt compelled to formally explore these http://www.youtube.com/watch?v=acxnmavtlza interests further. what resulted was a research proposal entitled, “understanding the psychosocial experiences of cancer patients of chinese ethnicity in the british columbian cancer care system”. i recognized that often, despite providing the best that modern medical care can offer, health care providers may overlook or be mistaken by what is truly important for the patient. this was the case for nímāmā, whose cultural identity had created a divide between her and her son. the tensions that filled this gap became magnified by the illness to the point that her psychosocial distresses had a larger impact on her overall wellbeing than any medical intervention ever could. i have learned that it is therefore paramount for hcps to attend to not only the medical but also the psychosocial experiences of their patients and significant others in providing the most effective care possible. my research question evolved over time in parallel to my own introspection of my cultural identity. although i am living in a city that surrounded me with people of chinese ethnicity, i felt in large part different from those around me. i had after all grown up on the east coast of canada in a small town. i could count on one hand the number of visible minorities in my elementary school. my upbringing was therefore very prominently grounded in an english speaking, european influenced community. here in a multiethnic city like vancouver, i encounter people who are often struck by how anglicized i appear or how accent-free my oral english is. i quickly became aware that, in spite of my shared ethnic background and skin colour with other people of chinese ethnicity, my experiences have led to a very different life than others here in vancouver. moreover, with increased interaction with people of chinese ethnicity in vancouver, i became more appreciative of the tremendous range of people‟s background, see appendix a: initial research proposal. experiences and in turn cultural identity. the ethnic chinese population consisted of international students as well as students born in canada to chinese parents, newly arrived immigrants as well as those who have lived in canada for many years or generations. there are also students who are in canada merely to study and those who hope to stay permanently. given the primacy placed in research on defining one‟s population of study and construct homogeneity, i was challenged to either define more precisely the construct “people of chinese ethnicity” or abandon it altogether. abandoning “chinese ethnicity” became increasingly appealing as i reviewed the literature. my search for relevant literature uncovered cross-cultural studies comparing ethnicities (ahn et al., ) or exploring the experience of asian breast cancer patients (ashing, padilla, tejero, & kagawa-singer, ). study after study used this ethno-racial discourse in such a way that became the norm of the literature. i identify this as originating from our colonial routes where it was always about distinguishing between us and them. i became disenchanted by these studies. in reading through them highlight ing points that seemed important, i was often left wondering whether their findings were attributed to this loosely defined “chinese ethnicity” construct or whether it was just a reflection of our comfort as researchers to categorize and formulate heuristics. many study findings could have been summarized in the general form of “people of ethnicity x do a, while people of ethnicity y do b.” these considerations again brought me back to my earlier recognition of the diversity amongst members of a given ethnic community. it made increasing sense to abandon an exploration of “cancer patients of chinese ethnicity”. admittedly, such an abandonment of an ethnic framework also comes at a cost. as noted, the ethnic framework predominates within academic and research community. my inquiry about immigrants may lose relevance to some members of this community by not using familiar terms such as chinese and asian. this is my attention turned to the experience of immigrants as i asked myself, how are the experiences of chinese patients any different from canadian patients? in many ways, the experience of cancer for any two people may be vastly similar. the confrontation with a life- threatening illness and with the possibility of death, the challenges with family and friends, the seeking of support, the coping with the side effects of treatment are themes that exist regardless of ethnic background or cancer type (carlson et al., ; centers for disease control and prevention, ). at the same time, chinese cancer patients and more specifically immigrants are moving from one social context to another. this transition might entail learning a new language, negotiating foreign social institutions, reconciling different values and beliefs, or adapting to a new political system. these differences underscore a profound cultural transition that is arguably fraught with challenges that are not experienced by canadian cancer patients. in reflecting on nímāmā‟s life, i realized that it was this added transitional experience that i wanted to explore in formulating my initial research inquiry, “understanding the psychosocial experiences of cancer patients of chinese ethnicity in the british columbian cancer care system.” as a result, my evolving research question replaced the reductionistic and falsely quantifiable notion of “ethnicity” with immigrant. rather than using constructs that are situated in a geopolitical framework, i began to speak about experiences and about culture . at the end of the day, it is this framework that i feel more comfortable scaffolding my findings onto than constructs such as chinese ethnicity. evident in considering the larger number of hits returned on scholarly search engines when using ethnic search terms compared to “immigrant”. it should be noted that the construct “culture” in this document is defined very differently than ethnicity. refer to chapter . for a more extensive discussion about my understanding of culture. in following this line of thought, i became interested in young adulthood as it also represented a transitional experience that can be fraught with challenges. my own confusing and turbulent experiences through my teenage and university years reinforced this view. in reviewing the psychosocial oncology literature in the area of young adults, i quickly realized that this is a population that is marginalized in cancer care (adolescent and young adult oncology progress review group, ). young adults seek services in an institution that is geared largely to a patient population that is much older. at the same time, their age and developmental maturity makes paediatric cancer services inappropriate for them. these anecdotes are reflected in the substantial health disparities that exist amongst the young adult cancer population. since the s, -year survival rates have dramatically improved for children and for older adults aged and above, while remaining relatively unchanged for young adults (bleyer & barr, ). they are referred to by some as the “forgotten generation” (k. chalifour, personal communication, november , ). interestingly, i believe that at the intersection of my own immigrant and young adult cultures, my experiences were different than if i had been older or born into a non-immigrant family. in the case of nímāmā, there was an implicit and culturally imbued expectation for me to take on the care giving role. more generally, i grew up taking on a number of heavy adultly responsibilities by virtue of being the cultural interpreter and guide in my immigrant family. i have discovered this to be a salient theme amongst other immigrant young adults (bacallao & smokowski, ). . . hope renewed and yet hope lost. three months and a series of embittering struggles after i submitted the first iteration of my ethics application, i received the email from breb approving my project. finally! i could begin with recruitment. it was a boost of adrenaline to my project. i felt momentum again. i was ever hopeful that i could still catch up with the particular timeline that i had set out for myself. two months for recruitment and participant observations over the summer, a few weeks for data analysis and a few more for writing. if i put in some hard effort, i could graduate in november. like my hopes for an efficient ethics review process however, this plan also collapsed. weeks went by without a single inquiry. it became a test of patience. i contacted numerous institutional gatekeepers within and outside the cancer agency. my contacts snowballed through colleagues, and then colleagues of colleagues. i presented my study at nurse and counselling team meetings, to local not-for-profit agencies, to organizations in other regions of canada i discovered on the internet. in spite of these efforts and the many institutional gatekeepers that i managed to gain support in recruitment, only three immigrant young adult with cancer made inquiries of which only one was eligible to and interested in participating. the momentum from a successful ethics application quickly dissipated. journal entry - - why has this process been so difficult? was there something that i could have done differently in recruitment? i‟ve been reflecting on these questions with colleagues and hcps. it seems that many who engage in research with immigrants or ethnic minority groups experience these challenges. maybe, as the volunteer coordinator at the cancer agency speculated, models of volunteerism don‟t readily exist in some parts of the world. so, the practice of doing work without pay or tangible remuneration would be culturally foreign for some. as a parallel, i wonder to what the challenge of engaging immigrants and visible minority groups came up several times, including in my conversations with a number of researchers at the national multicultural conference and summit. degree the concept of research participation is localized to certain portions of our society or socio-economic or educational class. this prompts me think about how volunteering has served my own life. i volunteered in hospitals and not-for-profit organizations extensively in my adolescence as a way of demonstrating capability or willingness to paying employers and admissions committees. i volunteered in undergraduate psychology courses to gain extra credit. it occurs to me that even though i did not get paid for this time, volunteering was nevertheless commodified in these cases. at this point in my life, i volunteer as a sort of self-righteous social obligation that arises out of my privileged circumstances. now conversely, if i were to ask my parents, they would probably say that they have never volunteered before, and yet they have readily offered to cook lunch for church, help a family member move and arranged a meeting or connection for a friend of a friend. they haven‟t volunteered as this institutional culture that i belong to might define it – with an organization, guided by a defined role description and at a regular interval – and yet they have supported friends and family without tangible remuneration in times of need. i recently attended a workshop where i explore the concepts of privilege and oppression. i completed a very disarming exercise that gave me an opportunity to examine my own privileges. this exercise and its accompanying reflection are included as appendix e: journal entry: privilege and responsibility. i wonder how someone might react to my recruitment flyer if they had not grown up exposed to my commodified model of volunteering. maybe, it sounds something like, “look at all these flyers. why would i ever want to call up these people? i don‟t even know them.” weeks turned into months. planned deadlines came and gone without noticeable progress. my research question, “what are the psychosocial experiences of immigrant young adults with cancer?” could not be validly answered with a sample of one. i was desperate for progress. marla suggested i explore the possibility of adopting an autoethnographic approach, turning the research lens on myself. my first reaction was a sense of uneasiness. i had constructed my entire inquiry around an ethnographic methodology, with an in-depth exploration of the experience of patients and their care providers. what would it mean to just turn the lens on myself because i did not have enough data? was this even legitimate? even if it was, what would my research question be? my fears were in large part pragmatic but at the same time, i felt a sense of loss at the thought of this change. in recognizing all the work that came before this point and the prospect of having to start all over again was heartbreaking. i recalled how, in my defended research proposal, i boldly emphasized that the ethnographic approach is an “emergent research design that is responsive to ever-changing circumstances and the demands of the study and its image . personal photo of a bulletin board at the cancer agency. participants”. now that i confronted this possibility though, i felt timidly cautious, even paralyzed. i acknowledged to marla that i would look into autoethnography more. from what little i knew about the methodology, my outlook was poor. i knew that it essentially is about a researcher writing about herself or himself. i thought back to an early encounter with a professor during the first few weeks of my program. he taught a different discipline of psychology in a faculty separate from counselling psychology. i was putting together a scholarship application for a national-level competition. i sought out his feedback on my research proposal because he had overlapping research interests. my timidity as a new graduate student suffering all sorts of identity issues was compounded by my discovery of his published textbook on amazon. i felt diminished in his presence as i handed him my very rough proposal. he read it over, suggested amongst other things that i mention in my methods section the use of a qualitative data analysis software package. he went on to recount quite disparagingly about how he had once served as an external committee member for a counselling psychology dissertation defence. the student had apparently used an autoethnographic approach, spent some time living with people and just wrote about the experience. during the committee‟s deliberation, he had offered some strong dissenting views about the legitimacy of the work but to his great outrage, the student was passed. i remember feeling confused, perhaps equally outraged if my name would have been associated with the project. how could such storytelling pass as legitimate research at an esteemed intuition? i reflected on this early encounter as i walked home from my meeting with marla, head hanging low, demoralized, without much hope in my thesis ever getting completed. journal entry - - graduating with an med does not sound all that bad. . . turning inward. my research into autoethnography brought me to the writings of distinguished scholars such as ruth behar, authur bochner and carolyn ellis. at first, i reactively dismissed these works as plain fiction or personal journaling meant to entertain, not scholarly works that inform. the accounts seemed all too intimate, too transparent, too biased. the author was everywhere in the text. as much as i tried to bracket out the author‟s presence to get at the cleaner, more objective truth, it was impossible to remove them from the account. i constantly referred back to my preconceptions about what research is suppose to look like and found these contaminated writings to be insignificant or invalid. there came, however, a turning point to these critiques. it came from a book entitled, “communication as...: perspectives on theory”, a rather dense compilation of essays on how communication can come in various forms. bochner and ellis ( ) authored their essay on communication as autoethnography. what initially struck me was how it looked nothing like any of the other essays. it looked like the script of a play. in fact, bochner and ellis quite cheekily recorded one of their morning dialogues over breakfast and transcribed it into a description on communication theory. i was impressed with how plainly and clearly their piece discussed complex ideas about autoethnography. their very real dialogue invited readers into their morning discussion at their lakeside cottage over pancakes and blueberries. as i finished this, i looked back to some of the other essays. i was able to get no more than two or three paragraphs into those essays before i got exhausted by the complex language and concepts. i was stunned. i returned to some of the writings i had previously reviewed (and dismissed) with a fresh lens. without the taint of my own rigid preconceptions, i found truths of human experience. the prose were simple and relatable. there was an intimacy conveyed in the narratives that the empirical studies and theoretical discussions i had previously read did not possess. as i came to recognize the value of these writings in conveying truth about human experience, i began to reflect on the many other forms of communication that have the evocative and deeply intimate elements of autoethnography. movies, documentaries, literary works of fiction, theatre. some great works that came to mind immediately were danny boyle‟s movie “ hours” ( ), michael moore‟s documentary “bowling for columbine” ( ) and lance armstrong‟s account of his cancer journey (armstrong & jenkins, ). all are to me powerful and therefore effective ways of communicating truth about our human experience. journal entry - - why autoethnography as a method of research? watching the movie hours last night, i began to reflect on the power of personal narratives to convey a message. in this case, the message is made up of my experiences, the research findings. the movie chronicles the harrowing real life story of a free-willed, i-can-do-it-on-my-own hiker who becomes trapped for hours in a desert canyon with his arm pinned under a large boulder. he experiences desperation, sadness, revelation and peace. he is eventually forced to cut off of his own arm in order to free himself. it struck me how even without ever having been placed in such a circumstance, aspects of the individual‟s narrative deeply resonated with me. i felt each moment of his desperation, celebration, anger and resolve. one of the most poignant scenes for me was when he shouted for help, at first going through the motions but without a voice and then finding it. it became a transformative moment for the protagonist, going from a person who never sought help and could forever be self-reliant, to someone who needed help and in fact wanted help. he was able to let down his guard. there is some essence of the human spirit that is captured by this story, this very intimate and personal narrative, and despite my very different location life, i have been affected by it, been changed as a result of it. is that not the purpose of this research enterprise? to uncover some truth about our human existence and perhaps use it to better govern our future actions or the way we perceive the world? as i read more about the breadth of autoethnographic topics – living with a life-altering disability (murphy, ), ascending the ranks of academia as a woman (chang, ), being a professional poker player (hayano, ) – i became increasingly aware and discouraged that my own story did not fit my research inquiry. i could not pretend to know what it is like to have cancer. from my limited experience with patients and their care providers, i could not even extrapolate what their psychosocial experiences may be. i did not have what anderson ( ) refers to as “complete member researcher status”. for a long time, i ruminated over anderson‟s criterion of complete member researcher status. i was not a member of the culture that i endeavoured to study and therefore did not have the ethnographic immersion or expertise to talk about cancer. i wondered then if i had any expertise at all? i referred to my culture-gram , desperately trying to find some aspect of my cultural identity that i could link to this inquiry. journal entry - - here‟s a thought. i am a health care provider aren‟t i? well, i‟m getting there at least. i‟m working on my degree, more than three years in. i‟ve worked with a number of different clients, albeit none of them had cancer. but once i graduate, i could see myself working in cancer care. that would be a great job actually. i would get such fulfillment in supporting patients and their loved ones, bringing family members closer during the most precious moments in life. so, i may not be a health care provider now but i will be. so that‟s the cultural membership that i have through this journey. i‟m a health care provider to be. i‟m learning to be one. refer to appendix d: culture-gram. the realization fills me with a great thrill, a sense of empowerment. yeah, that‟s what i‟m an expert of. i‟m an expert of my own journey as a learner. wouldn‟t there be so many people who would be interested in this sort of journey? sure. i‟m sure everybody goes through this experience of wondering about what their role is, where they fit in. the idea of “my journey learning to be a hcp” ferments inside me for the subsequent weeks as my research inquiry continued evolving. email - - this autobiographic account would require revising the research question to fit. maybe something like “my learning as a care provider for immigrant young adults with cancer.” i‟ll consult with some folks who may be more familiar with the method and constructing such research questions. email - - at the moment, my working title is “my journey as an emergent health care provider for immigrants with cancer”. […] as a result of this shift, i‟ve thought about how my inquiry would also have to shift. rather than presenting the experience of iya with cancer (which i can‟t credibly do with the data i have), i‟ve been reflecting more on the personal experience of hcps in providing care to iya. this has also shaped my discussions with hcps, so it‟s been less about what they think are the experiences of iya but more about their own experiences in treating them (if that makes sense), which ultimately, i intend to inform my experience as a hcp. email - - i formulated a tentative research question to guide data analysis and interpretation: “how do i come to understand my role as an emergent health care provider to immigrants and young adults with cancer?” […] it still doesn‟t sound quite right to me as my inquiry also includes a “what is my role” question in addition to how. both of these questions – “what is my role?” and “how do i come to understand my role?” – seem worth exploring and yet i recognized that they are vastly different. to explore what my role is appears to be a necessarily personal inquiry. whatever conclusion i come to about my role would apply to myself only given my unique circumstances and cultural location in life. others who have different cultural locations – perhaps in speaking different languages, possessing different skill sets – will have different responses. although i report on my conclusions about the “what” question in this thesis, i would be remiss to suggest that this reality applies to others. on the other hand, the process-oriented “how” question seems to relate to a rather public experience. as such, this question would seem to yield the answers that will be most valuable to readers. every individual who aspires to work in the health care field would presumably undertake a journey to figure out where they belong. i would hope then that the process of how i have navigated my own journey will be helpful to readers. i report on the “how” question towards the end of this thesis. as i became increasingly convinced about the appropriateness of my research inquiry and methodology, the overall picture started coming together. suddenly the smorgasbord of data that i had collected up to that point – including interviews, textual artefacts, photos, observations and reflections – began to communicate a coherent narrative. that narrative revolved around the discovery of my role as an emerging health care provider. i jumped into the data analysis with a new found clarity and confidence. . roles, masks and this divide between us handle with care? (gray, ) scene one (at minutes, seconds) woman: i can‟t believe we‟re actually going! man: a cruise of the hawaiian islands! woman: i know. pinch me. it‟s like i‟m dreaming! man: you‟ll wake up with a visa bill… woman: oh yeah, but until then. three weeks. sun, sea, sand, paradise! grace: hi guys. woman: hi!... grace… (a look of surprise, speechless) man: how are you?! woman: grace, i have been thinking so much about you lately! (with forced sincerity) grace: (pauses, uncertain how to respond) woman: i‟ve been meaning to call but we‟ve just been really busy. grace: (smiles forcefully, shrugs comment off) woman: but we‟ve been really busy… man: […] woman: (jumps in quickly, speaks over man) … the usual... grace: anything new? woman: (whimsically) this and that. grace: everything‟s the same? (more as a saddened conclusion than a question) woman: pretty much. man: yeah. nothing special. grace: (turning away, head down) scene two woman : (miserable, wailing) oh! my shoulder! i hurt it playing tennis yesterday. i can‟t do anything anymore. sleep… woman : (miserable) oh, never mind your shoulder. you should have my back. my back is killing me. i guess if i exercised… woman : oh back shmack… woman : i guess if i exercised… woman : oh so boring. woman : yes, so boring. i know. grace: (suddenly entering) hi girls. woman and : oh hi grace! (surprised) woman : (cheerfully) oh i‟ve been meaning to call you but i didn‟t want to bother you. woman : (reaching for grace‟s hand, patting it) oh you‟re looking good grace. how are you holding up? grace: well, as well as can be expected, but there‟s some days when i… woman : (interrupting, extravagantly) oh grace. that‟s what i‟ve always loved about you. you‟re so positive. (turning to woman , smiling widely) isn‟t she positive? she‟s so positive. grace: i haven‟t seen you girls for a while. how‟s your back? woman : (dismissively) oh, fine. no problem. grace: any pain? woman : oh no. grace: oh isn‟t that wonderful. and how‟s your tennis game? woman : (agreeably, smiling forcefully) great thanks! grace: playing well? woman : just terrific! grace: well that‟s really good (uncertainty in voice). i came across this theatrical production as part of my interprofessional psychosocial oncology course. watching grace desperately want to participate in her friend‟s joys and frustrations and being shut out was heartrending. i wanted to just reach out to her, to help alleviate the loneliness that she felt. i was angry at her friends for abandoning her, for treating her like a stranger. she is still the same grace that you knew before her diagnosis. i wanted to scream for her. grace is not alone in her experience of loneliness. in fact, this strangeness and distance between people as a result of the experience of cancer is pervasive (rosenthal, ). it takes on many forms and occurs between many people. through these months of research, i have witnessed this strangeness within many interactions amongst those experiencing cancer. as a mere witness to these interactions, i feel saddened, outraged and helpless. i condemn those who act to isolate, to distant, especially during these moments of greatest vulnerability and need. as a witness, i want to fault so many and yet, in becoming a participant in these encounters, i discovered my own hypocrisy. as a volunteer and researcher, i found myself paralyzed by fear and uncertainty, which in turn expanded the divide between me and the people i was caring for. these moments were sobering. i also recognized that there are certain contextual factors that make possible this interpersonal divide and in turn cause isolation. in this chapter, i explore these sobering moments as well as attempt to identify the factors that give rise to my role, these masks and the divide between us. . . handling others with care. “handle with care.” the phrase brings to mind the image of a delicate museum relic, placed on a cushioned platform for protection and cordoned off from interaction behind glass for fear of breakage. there is a certain beauty to the relic, a mystique, an exoticism that i am intrigued and allured by. at the same time, i fear it. i fear its strangeness, its other-ness. i recoil from it and choose to observe it at a distance. i am reminded of the day that i first had this experience of handling patients with care. it was my first volunteer shift at the cancer agency. field notes - - putting on my vest, i notice my heightened anxiety. this is a foreign environment, don‟t know what to do. the experienced volunteer who is supposed to train me is late. i get excited. maybe i can leave. it‟s an avoidance response. i‟m so nervous that i just want to avoid this new role. i‟m worried i‟ll mess up. i feel pressure to do well. he arrives. i‟m annoyed, partly because of his lateness and partly because i‟ll no longer have an excuse to go home. i follow my trainer back to the main lobby, ride up the elevator to the sixth floor. i have so many questions. the ward seems so surreal. there is a large waiting room where patients wait for their attending nurses to call on them. it comfortably seats about people. after getting called, the patient follows their nurse into a go into a room that can have as many as three others and receive chemo. (life-changing, life-giving and life-killing of tumour cells all at the same time. funny in a way.) there‟s something so unsettling, scary about being here in the chemotherapy ward. feel so hesitant, apprehensive, reluctant in approaching patients, in entering their rooms for fear of intruding upon their personal space. i feel this way even for something as innocent as peering into a room to see if there are any new arrivals, so i can go in to offer tea and coffee. even that feels intrusive. i feel disgusted. it‟s like i‟m being a voyeur, an audience in some twisted spectacle. the patients are the performers, sitting in the room for display, to entertain. i feel so awful in what i‟m doing, despite the goodness of it on the surface of offering something kind, some conversations, some warm beverages to make them feel comfortable. i try to make small talk with my volunteer trainer to present a cool, calm and collected image. as i follow him, observing how he approaches and engages the patients, my mind is on overdrive, considering the many possible implications of his every action and response. he tells me to relax. don‟t think too much. (i‟m annoyed. who are you to tell me how to feel? why is being a bit careful a bad thing? shouldn‟t we be aware of how our actions affect patients? my annoyance goes away. i realize that i am being too careful. i am treating these patients so carefully, with such sensitivity and protectiveness that i‟m not respecting their ability to take it. to take my entering into their space, to take my looking into their rooms from out in the hallways, to take my happiness or insistence on happy days. that somehow, they are so vulnerable in their circumstances that they can‟t bear anything. but that‟s not helpful. if i was a patient, i know that i wouldn‟t want to feel condemned by my care providers. that would infuriate me, to be dismissed before i was ready to be dismissed. i wonder if that‟s the case for them. when people are overly kind or overly sensitive, i wonder if patients feel trapped or backed into a corner or condemned to die.) later on in the year, when i switched from an outpatient role to an inpatient role, all the same doubts and anxieties re-emerged. field notes - - while eating at lunch, i acknowledge my apprehension about this new role. how do i connect and engage with patients. i feel nakedly unprepared, without any introductions to the staff as the volunteer coordinator had initially mentioned. i feel reluctant to approach the nurses as they are engaged in conversations. i have no idea who is who. who do i talk to about what? as i walk along the hallways, nervously peaking into the rooms for people to engage, i notice many patients with their eyes closed. some are asleep, others, merely resting their eyes. some have headphones on, some curtains drawn around their bed. i perceive their space closed to me, as if i am a canvasser going door to door, a “beware of dogs” or “no trespassing” signs mounted on their front lawn. i feel lost, not sure whose room i am permitted to enter. i notice a sign hung on a door to a room at the end of the hall. “radium implant ward,” it‟s labelled. “visitors please visit nurse station before entering” and “restricting visits”. (i have the vision of a horror movie, an unknown evil residing behind the door to which no-one knows.) […] i engage in a conversation with a patient. i am left wondering if he was entertaining me or i him. i feel relief at my presence. did he really feel relieved as a result of my presence? i feel clumsy at this, incompetent. i feel frustrated with myself and with the lack of clear direction. i really struggled in trying to establish meaningful connections with patients. in spite of my best intentions, my fears and uncertainties have often gotten in the way. it saddens me to think that if i, as an individual who works on developing meaningful relationships for a living, struggle with such tasks, how many other family members, friends and hospital staff also struggle. we want to connect with our loved one or patient but we fear impacting, hurting them or breaking them; and so we stay away. we withdraw because we care to not hurt. we suspend our own contentment or frustrations for fear of how they may impact our loved ones. these struggles of ours certainly do not go unnoticed by those we care for. “i don‟t know if he is scared about something” said one immigrant young adult with cancer about his father who doesn‟t ask about his emotional experiences in cancer. for this young adult, this leaves him feeling distant from his father. he expressed confusion. “i don‟t know if he doesn‟t want to know… he want to know, but he want to know through my mom. he doesn‟t want to know through me.” another young adult expressed similar confusions in her journal about the state of the significant relationships in her life. image . excerpt from diary of a young woman with cancer. her confusions cause her to feel uncared for by the significant supporters in her life. she begins to resent them. image . excerpt from diary of a young woman with cancer. as we wrestle with our fears and uncertainties, our loved ones or patients will reciprocally have reactions. as the two young adult noted, they felt their loved ones backing away and in turn, they did likewise. the divide between us grows rather than closes, in spite of our best intentions. . . my critical voice. at this moment, i find myself thinking about my own actions in taking care of nímāmā. i think about my concerns with having left a fun and festive christmas holiday season, my resentment in feeling obliged to do so rather than as my own feeling choice, my frustration in being physically confined to a hospital room. as i reflect on my actions, i am confronted by the painful conclusion that i tried to distance myself from those responsibilities and as a consequence, distanced myself from her. instead of coming into her life as a family member and support during her moment of greatest need, i turned from her. i betrayed her. i feel like a sleep walker who awakens to find blood on my hands. my heart is beating heavily. i want to scream in anger, in self-loathing. i have become the very person that i despise the most, the one whose self- centeredness and narcissism clouds all other considerations. i try to still my thoughts and my body. i take a deep breath. another. i am being far too critical of myself. nímāmā would not agree. she would have expressed appreciation for my presence, my support. “and yet she did not know your intentions, your yearning to be elsewhere.” but this was reactionary. i had left my selfishness behind. “but you had these selfish desires nonetheless. if you had the choice, you would have been at home, celebrating the holidays with your friends and playing mindless video games.” yes i did and i would have, but i did not. my selfishness will always be a part of me, but it is not the only part of me. my cultural identity is composed of many cultures and as such, i choose what value systems i affiliate with at any given moment. this critical voice. i know it well. it is born out from the cultural value system that i have grown up with; the perpetual dissatisfaction with present circumstances, the unrelenting pursuit of improvement. i almost hear the messages being spoken in my ear. it is the voice of my mother. it is heartening and inspiring. it has pushed me to where i am today, and yet in the same breath, it crushes me, reduces me in stature during moments such as these. i can at times feel diminished, even inadequate, but i must remind myself that this is not the entirety of me. another deep breath. . . drifting apart. as i reflect on some of the significant relationships in the life of individuals with cancer, i imagine the pain of being distant from a mother, a partner or a sibling. i remember a poignant vignette of a young adult with cancer. field notes - - she has been forced to move back home because of her diagnosis. she is sitting in her room, in front of her vanity mirror. the person she sees staring back at her is a stranger, nothing like her. there is a knock on the door. it is her mom checking in on her, telling her that it is time to come down for dinner. she says that she does not feel hungry. her mother insists that she needs to eat to stay strong. she insists otherwise. a momentary expression of frustration. having achieved self-sufficiency and moved out on her own, she has now been forced to return to the watchful eyes and control of her mom. she resents her mom for limiting of her independence, her self-determination. her phone vibrates. it is a text message from her friend. an invitation to a party. she wants to go. it is her way of maintaining some sort of normalcy in this now abnormal life. she calls out to her mom to tell her that she is heading out. a prying response of where and what about dinner. she insists she can pick up something while out. her mother reminds her that dinner has been especially prepared and that it was decided to be family night tonight. she engulfs a loud and deep breath of exasperation and defeat. she looks back to her mirror, still seeing the stranger staring back at her. in an explosion of anger, she throws her cell phone to the ground and breaks down in tears. in a journal entry, she also wrote of her experience of the unravelling of her relationship with her boyfriend. image . excerpt from diary of a young woman with cancer. it saddens me to think about how suddenly such significant relationships can unravel and support systems become coldly distant. we try our best to care for our loved ones or patients and yet in doing so, we are rendered strange, and they, invisible. handle with care? (gray, ) (except from minutes, seconds) ladies and gentlemen! step right up and meet magda the magician. with a few magic words, i can make things disappear. i can even make myself disappear. just a simple magic formula. easier than abracadabra. well i don‟t exactly disappear, but after i utter these magic words, a cloud will descend on you, and you will no longer see me. you don‟t believe me? wait and see. i‟ve done it before for family and friends. it‟s sure fire, no fail. and what is this magic formula you ask? ready. here goes… but first, take a good look at me, and remember what i look like. and now, the five magic words… i have metastatic breast cancer. so do you still see me, or has the magic cloud done its work. some of you do? how unusual. the same me you saw before without the usual masks; the mask of the doomed woman, the mask of victim, the mask of indolent, the fighter. where‟s the real me? the one who loves chocolate fudge and robert redford movies, the one who wants to play bridge and talk about your son‟s wedding, and hold my niece‟s new baby, the one who wants to share your joys and sorrows as much as she ever did. i wish i had a magic formula to bring that woman back from under the cloud and from behind the masks. if any of you know that one, please tell me. hearing magda‟s words send chills up my spine. i was moved by magda‟s resonant description of the many masks that we wear to disguise ourselves and become strangers to each other. it seems crazy that we would inflict such cruelty on each other in the most precious moments of our lives, and yet we do. i do. i did in my relationship with nímāmā. she wore her mask of togetherness and strength while i, well, i am not quite sure what mask i wore. nevertheless, i always sensed the insurmountable divide between us. maybe it was my young age, my younger generation. maybe in her eyes i was still her eight year old nephew, the youngest of my generation, the one that everyone had to look out for. maybe even in her weakened state, she still felt compelled to protect me from her pain. i can never know and yet somehow, whether she perceived me as her eight year old nephew or not, i colluded in the role, playing the part perfectly, confused, powerless and helpless. why? it seems so senseless. considered in this way, we did not inflict cruelty upon each other as though we had some intentionality in the process. the great tragedy seems to be that, in spite of all of our care and well-meaning, the masks appeared over our faces and we became distant strangers to each other. conversely, one counsellor alluded to how young adults she works with often refer to the idea of wearing a mask. the masks serve a valuable function for these individuals with cancer who often feel as though they exist in two different worlds; one containing their life with cancer and the other containing their normal life that they desperately cling onto. in each world, different masks are worn in order to conceal certain fears or pains so as to not stand out in their immediate context. all the while, the cost to them is that they lose themselves and their connection with others. when all that others see is the mask, the person behind the mask simply disappears. these descriptions eerily hit close to home for me. i am reminded of how similar this is to my own experiences growing up as an ethnic chinese boy in a predominantly caucasian community. i recall how my desperation to feel a sense of belonging drove me to wear masks. i have never had cancer. i have never even been seriously sick for an extended period of time, and yet i feel a loose sense of connection, of shared identity with young adults with cancer. i will never know what it is like to walk in their shoes but it feels vaguely comforting to think that, as a hcp, i can identify with them, even if only in the smallest of ways. i shudder to imagine how our loved ones could just disappear before our eyes. what comes to mind is the image of a great web of life, its fibres representing the connections between people. cancer eats away at the fibres around supporting people until they are gone, leaving a vertex unsupported, alone and suspended in space. as i think about this image more, i realize how it is the very fibres that make up the vertices. without the fibres, the vertex does not exist. it disappears from the world. what seems most tragic in this entire cascade of events is the seeming inevitability of it, that it is a natural entailment of the experience of cancer. it is hard to imagine people choosing to isolate themselves from their support systems and yet, it inevitably occurs. as i think about this, i notice myself exhaling a deep breath filled with frustration, anger, sorrow and anguish. i feel it both for my connection with nímāmā as well as the many other connections that suddenly dissolve. . . struggling to find the balance. i am therefore saddened to see care providers distancing themselves from their loved ones or patients. as much as i try to avoid this pitfall of handling people with care, i constantly notice myself doing so. field notes - - prompted by an off-beat remark about his hawaiian shirt, we start talking at length about past vacations to hawaii. it‟s my first substantial conversation. feeling quite nervous. i am aware of the way i am forcing the conversation, filling the occasional silences with my further questions. at the back of my mind, i recognize the gravity of the circumstances and know full well that this conversation may remind him of how such fun experiences will never be recreated again. are any topics of conversation safe? field notes - - as i talk with her, i notice the extravagance of my intonation, the effervescence, the emphasis. i know that it often happens in encounters with strangers or older adults. i feel dirty with this dishonesty. what compels me to adopt this mask of happiness? why am i not my authentic self? these excerpts describe moments in which i grappled with how best to relate to a patient and tried to find a balance. be happy. no. do not show happiness. well… maybe be somewhat engaging and exuberant. no, that does not feel right either. over the weeks and months at the cancer agency, i experienced many of these moments of struggle and confusion. the first excerpt illustrates my obsession with limiting every little statement that might sound positive or happy. i did not want to disturb the patient, to remind them of more joyful times in their lives that they may never be able to recreate. as the following journal entry shows, the continuance of life can be a painful reminder of how much life stagnates in the face of a life- threatening illness. image . excerpt from diary of a young woman with cancer. i was therefore careful to not cause others the same pain. i was restrained in my display of positive emotions. i avoided greetings like “good morning” and “nice to see you again” while i was at the agency. i kicked myself for letting slip questions like “how are you today?” i even stopped referring to the outdoors as i would with “boy, it‟s a beautiful day out.” i was constantly walking on egg shells during my time at the cancer agency, always on hyper alert about the words that i used. my intentions were well-meaning. i wanted to take great care to not cause further pain. this however came at the cost of my genuineness and warmth. i became calculated and overly cautious. my good intentions in practice amounted to an obsessive mission to not cause emotional response at all, positive or negative. conversely, i postured myself at the other extreme. as the second excerpt shows, i adopted a cheerful and exuberant persona. i wanted to lift people out of their emotional lulls. circumstances are depressing enough at the agency that we should all make an effort to cheer people up. two conversations prompted me to think about where a happy attitude fits into forming connections with people at the cancer agency. field notes - - three women arrive in the chemo waiting area. i can tell that the one who stands in the middle is the patient. she looks exhausted, fed up with the circumstances she finds herself. the women to either side of her try to engage her. they suggest looking at head coverings. she seems uninterested. they say that there‟s a box of them. i quickly hurry out of my seat and dig out the box of head coverings made by volunteers. the two supporters dig through the box, occasionally fishing one out and commenting on how its colour or design would go well with this and that. the patient follows along disinterestedly. the two do not seem to find anything satisfactory. “there are more downstairs,” i note. the two are heartened. is there one that is a solid colour, preferably black made of cotton and with a brim, they request on behalf of the patient. i leave to check. i return to find just the two women. the patient has been called in. i sit down to one side of one and present the head covering that i managed to find. she receives it casually. i‟m surprised. not with the enthusiasm that she‟d been expressing while digging through the box. her tone is also less expressive, more subdued. they‟re sisters of the patient, both from out of province, she tells me. she‟s a former oncology nurse. both feel responsible for constantly reminding their sister to stay positive. it is tough going these days. she sighs. i have no response. what could i possibly say to make the situation better? i notice the exhaustion in her now, exhaustion that she hid in the presence of her sister. i feel saddened in thinking about the masks that they must pretend to wear. i sit attentively, offering contemplative silence and a quiet place to rest. field notes - - “i‟m not ready for christmas,” says the hospital staff member as we sit in the lounge. i think he‟s worried but he doesn‟t appear so. he actually perceives it to be a good thing. “then, sounds like you are ready for christmas,” i venture. “not in the conventional sense of being ready with all the gifts bought and decorations hung.” “oh!” the commercialization of christmas, not what it‟s meant to be, he laments. “at least here, that is stripped away,” i point out. “people come here to live, not to die,” he declares. i‟m struck by simplicity and yet depth of his statement. “in working here, i‟ve learned to live each day.” it‟s a tough lesson to learn. “you‟ll never see me depressed. if you were to walk into a patient room wearing a frown, you‟d bring other people down.” i agree. “so it‟s part of the job description to wear a smile then?” i wonder. “you really have to maintain a bright face to work here.” i recognize the value of maintaining hope and a positive attitude in an environment when death is all around. and yet, i am tempered by the very realistic vignette of grace and her friends. it was revolting to see grace‟s friends cornering her into feeling positive and denying her circumstances. where does maintaining a positive attitude cross over into self-delusion or denial of an individual‟s emotional existence? the answer to this question seems somewhat difficult to pin down in thinking about the number of different circumstances that may arise and the different needs or personalities of patients. these considerations add to my confusion around how i could most effectively establish meaningful connections with patients and their care providers. regardless of where the balance lies in presenting a positive attitude though, i found myself for the most part trying to be more cheerful than i otherwise felt. my reasoning was that i was after all providing a service to people. i was providing companionship. who would ever want a volunteer that seems to have no energy or feelings? i therefore worked hard to come across as a pleasant person, as welcomed company to have around. my existence as a volunteer was validated by the contentment of patients and family members that i served. i was fed by their smiles. i was demoralized by their absence. i found myself feeling dejected in moments when there were fewer patients to serve or when they did not need me. field notes - - i go do my rounds. i serve a few teas and coffees uneventfully. field notes - - i do my rd round quickly. no takers. i grab a blanket at a nurse‟s request but that‟s it. quiet. i feel sleepy, unengaged. field notes - - for myself though, i felt relieved that someone actually wanted to engage today. field notes - - i approach the nurses at the desk to ask if they know anyone who might be interested in a visit. “no” says the first nurse. i feel like i get bounced around to a number of nurses but no takers except one. filled with excitement, i note the name, room and head off to check. just my luck.  he‟s sleeping, food tray left untouched on a tray hovering over his chest. i‟m disappointed. […] i get referred to another nurse on duty. no again. the “lady with the dog” had already come by. (i feel irritated, jealous, foiled again from being helpful, useful. i feel ashamed for trying to compete with the lady who does pet therapy. i don‟t want to be competing against her. i should be encouraged that there are so many forms of support and interaction here.) as i re-write this experience for what must be the fourth time (and as a consequence, reinterpret it for a fourth time), i feel a sense of rightness. the puzzle pieces are finally fitting together properly. this is what my experience was. in each of my previous passes at this experience, i was just forcibly writing a narrative that made sense. now, this interpretation makes sense to me. now this narrative is one that i can own. field notes - - i head first to the nurse station. expectations set low. […] she names a number of patients. i‟m delighted by the lists. field notes - - she accepts my offer to sit with her. i‟m hugely surprised and relieved. […] she asks if i could look over her request letter. i do so. she thanks me. i leave feeling content that i was able to be useful to someone in need. i wish her well. i notice a warmth inside me. my cheerful and exuberant tone of voice and these reactions to offering help are all too familiar. they represent my desire to be helpful and therefore to be appreciated by others. there is much more to this desire than just simple helpfulness however. i trace my need for validation back to early childhood experiences of being a different looking kid in my elementary school. being an outcast, i learned to develop personas that were appreciated by others. i put aside my own identity for those that others preferred. over time, i became quite skilled in adopting the one that was best received by those around me. the cost of this was considerable as i have come to realize much later on in life. in being what i thought others wanted of me, i lost sight of who i was deep down. in not having presented myself to the significant people in my life, i realized that they really did not know me. in my attempt to satisfy what i thought my friends wanted of me, i lost them. it is probably for this reason that i react so aversively to when this extravagant, people- pleasing side of me emerges. for me, it represents much more than just being superficial. when i become exuberant and put in more effort into my communication than i feel is honest, i am not only creating a divide between myself and those dearest to me. i am also denying my very existence. i am repulsed when i experience this in myself as well as in others. people who seem overly happy or expressive serve as strong triggers me. i do not trust them. i am unable to get to know them. their lack of authenticity keeps others at a distance. i can think of one very aversive encounter at the cancer agency that is imprinted into my memories. field notes - - another nurse enters the room. my attention is immediately drawn to the tone of her voice. it‟s bubbly, embellished, increased a few octaves to convey a sense of niceness. it‟s all that i can hear. she works quickly, adjusting an iv bag, checking a machine. the patient points out to her that he has a visitor. she responds with a cheerful, over the top “oh, i see!” she makes a few other remarks but i am unable to pay attention to her words because all i can process now is her voice. work done, she turns to leave. as she walks by me, she turns her head quickly towards me and with the most incongruent smile, superficial voice, eyes looking past me, she says, “thank you!” her overpowering aura hits me like a tidal wave, nearly knocking me over. the interaction is brief and yet so viscerally off-putting. i recognize how much it is filtered through my own lens of personal experiences. moreover, i find myself feeling outraged on behalf her patient. putting myself in the shoes of the patient, i cannot imagine how i could ever relate to or feel comfortable with this hcp. i would feel reluctant to display emotions that were not compatible with hers. perhaps this is what bothered me the most. i am outraged that someone could act in such a way that robs another human being‟s very basic ability to express his or her feelings. my reactions, i admit, are excessively unforgiving. when i remind myself of my own cultural location, i feel compelled to temper my criticisms of this hcp. i come to experience this interaction as someone who practices counselling within the bounded confines of the therapeutic hour. over the course of this hour, i try to create a space in which a client is able to be taken the therapeutic hour refers to the traditional timeframe in which a counselling session is conducted. through a therapeutic arc of establishing safety, exploring deeply and integrating newfound awareness. within this model of counselling, “shallowness” would be reflected on and perhaps challenged. in contrast, most health professionals likely do not operate within this framework. inpatient nurses play their helper role from the time they start their shift until the time they finish. they might occasionally find reprieve from their patients at the nurse‟s desk but that is very different from the physically and temporally distinct spaces that i am able to retreat to outside of the therapeutic hour. as such, the roles that nurses occupy seem to blend together much more. perhaps in this work environment, they need to wear masks – the mask of the exuberant, positive or optimistic care provider – in order to carry on in their roles (vahey, aiken, sloane, clarke & vargas, ). irrespective of the function of masks however, i am disappointed that what results is a deep divide between the care providers and those they care for, an observation that is acknowledged by others (kuhl, ). . . our cultural context and the divide between us. up to this point, i have spent a significant amount of time examining how my actions as a hcp and those of the patient may create an interpersonal divide. taking a step back, i have also noticed how our circumstances, independent of our actions, may also play a significant role. field notes - - as we converse, a pharmacist walks in. i remark how instantly her talk changes from our everyday discussions that are far removed from medical conditions to a pharmacist interviewing her about her ailments and drug reactions. the transition is sudden, abrupt and yet so seamless, as though it is the most natural thing in the world. […] another visitor. her oncologist. he is older, pleasant in mannerism, dressed in red holiday attire. his tone is respectful, happy but not overly so. (i feel a warmth in his presence. i feel that i can relate to him.) she engages with him in the same open and forthright way that she has with me. he asks a number of questions. her responses are short, succinct. the conversation feels rushed to me, her disclosures premeditated; the way a radio interview during a morning news broadcast might be conducted. i get the sense that this is the expectation for how conversations are conducted between doctor and patient in this context. efficient, to the point, no chit chat, no deviations. his responses are similar to the pharmacist and yet i sense a certain authority in what he says. he talks about switching her on a few medications. she expresses some concern about side effects. he provides some explanations on why some decisions were made, what alternatives they are considering. it feels collaborative to some degree and yet not so. a decision seems imposed to administer the stronger drugs now to be safe and sure rather than milder drugs with more uncertainty. she asks for permission to leave for home. (a grown woman asking for permission. wow. this sounds bizarre and yet normal at the same time. only in the hospital can such fully capable adults be reduced to the dictums of others. given the subject matter, knowledge resides with the oncologist. he is in a privileged position and yet this power structure – her need to seek the approval of her doctor – seems so very normal to me. this power differential is so deeply ingrained in the culture that it becomes invisible, or if not invisible, then at the very least accepted. i soberly reflect on my own profession and practice. what is the nature of relationships that my clients and i form?) she has full trust in her doctor, explicitly stating such, which reinforces this relationship. “you are the doctor.” the above encounter reminded me that the cancer agency represents a distinct cultural context with accompanying practices, traditions and norms of behaviour. it impresses me how each individual in this context is well aware of their roles and engages with each other in ways that are consistent with that role. the immigrant young woman did so seamlessly. one moment, she was talking with me about the holidays and her family and the next, about her medication with her interprofessional care team. the subtext of their conversations also pointed to the power structures that exist between, for example, the patient and her oncologist, with her seeking permission from him. all of this plays out in a way that seems entirely natural, perhaps speaking to the deep embedding of this institutional-medical culture within our society. the way each person in this scene communicates with each other is like a graceful and well-coordinated ballet; the institutional-medical culture, a choreographer‟s directions. although the patient was born outside of canada, she spoke very fluent english, conceivably reflecting her familiarity with the choreographer‟s directions. she was part of the ballet studio, so to speak. conversely, it is apparent that there are things that would disrupt its graceful flow, things such as the addition of new dancers or dancers who have backgrounds in jazz, for example. likewise, cultural outsiders who enter the cancer care system, such as newly diagnosed or immigrant patients, their family and even volunteers, will reveal its inflexible norms and practices. field notes - - i walk into one of the chemotherapy rooms. a patient of asian ethnicity is sitting in one of the chairs, his family of four clustered around him. (it feels lively but crammed, a change from the usual quiet.) my offer of coffee and tea is directed at the entire group. one family member speaks up, questions the nurse whether the patient can have beverages. sure. the family member- interlocutor turns to the patient and asks in english. (i wonder if they serve as middle people because they feel a need to be of some use. all the while, i can‟t help but think that the patient sits in a protective bubble. i wonder if it feels anything like being trapped in a prison. i wonder if he feels conflicted, seeing the guards in this prison as his loved ones.) my wonderings here points to a dilemma that i have often reflected on. to a patient, family members will often serve as an essential crutch in the patient‟s coping with cancer (arora, finney-rutten, gustafson, moser & hawkins, ). at the same time, family members can also make difficult the cancer journey. i think about the tensions that might exist in instances when the viewpoints of family members and patient are at odds (freedman, ). for parents with cancer, complex and unique challenges exist in incorporating them into the cancer journey and preparing them for the future (hamilton, ). as a volunteer at the agency, i often times perceived a significant interpersonal barrier with the patient when family members are present. i opt to not enter rooms when patients already have company. granted patients may prefer having their loved ones around over other hcps – i must temper my own egocentrism – i wonder how medical professionals who experience such distance are impacted in their work. i remember the day in baltimore when a social worker had come by to check in on nímāmā. in spite of the significant emotional distress that she seemed to be experiencing, her interaction with the social worker was brief and congenial. to this day, i still wonder if my presence caused both nímāmā and the social worker to feel more guarded, more restrained; preventing that interaction from being as valuable as it could have been. . . language divides. language gaps also create interpersonal divides between patients and their hcps. where family members exist, they often serve as valuable interlocutors in patient-hcp interactions. where linguistic bridges are lacking, i have found there to be many different sorts of challenges to care provision. field notes - - english is a foreign language for her. she accepts my offer to sit with her. i‟m hugely surprised and relieved. i notice how little i expected from this encounter, presuming immigrant family members are valuable in helping to bridge language gaps between patients and their hcps. they are, however, also individuals with vested interests. as such, they will assess and filter words, possibly leading to miscommunication or incomplete information. i was interested to note that the provincial health service authority has a policy encouraging the use of third party/professional interpreters whenever possible. patients to be more closed off. we talk. i ask questions. […] i‟m having a hard time hearing sometimes, because of her soft voice and throaty articulation. i catch only pieces, but reflect back to show that i‟m listening and trying. (i want to honour the story that she‟s willing to share. i wonder with impatience how long it will take to get a visa for her family member.) i interpret an expression of despair wash over her otherwise inexpressive face. a few weeks later, i meet her again. field notes - - i enter her room timidly, re-introduce myself gently. she remembers. she just had a friend drop by and is expecting her daughter later in the afternoon. her speech is soft and throaty, as i‟d remembered it. i have a hard time understanding her: there‟s a family in the adjacent bed speaking loudly. i comment on how difficult it must be to communicate with the staff. she points out that she has no trouble understanding nurses though she has hard time communicating her own thoughts. the woman next door has it worse, she says. can‟t even understand. i felt frustrated with the clumsiness and incompleteness of my conversations with her. as much as the experience of cancer is often expressed in the broad strokes of anger and sadness, it is often in the subtleties of language that meaningful connections are made. there was much that i yearned to communicate to her but was unable to. in spite of my frustrations, we were at least able to connect on a number of topics. i felt encouraged that i was even able to look over her visa request letter. this expectation of immigrant patients to be more closed off is admittedly a generalization, though i do not attempt to use it to limit possible connections. i am struck that i have formed this impression in the first place. i wonder how much this deduction has to do with my observations in the field versus my own preconceptions. if the former, does that reflect a discouraged attitude or disparity amongst immigrants in communicating with their hcps? i have experienced that sometimes, it is also in the silences that connections are made. for a greater discussion of this experience, refer to chapter . . someone who is simply present. her reference to the patient in the adjacent bed who can neither communicate nor understand english was a sobering reminder of the significant challenges that some patients experience. i am reminded of one cheerless visit with a patient. field notes - - a nurse enters to adjust the iv and equipment. she stays only briefly. her interaction with him is minimal. (i wonder to what degree she feels uncomfortable or inhibited by their language difference. i wonder how much the service received by patients with language barriers suffers due to this barrier, how much patients lose out on the kindness, compassion and humanity that is afforded by language or more specifically, verbal communication.) she leaves. […] the nurse returns. he acknowledges her non-verbally in the room. she has to change the iv pouch. (i wonder if he really understands what he is being subjected to.) […] a food service staff comes to take an order for lunch. she quickly lists a number of choices which even for me is hard to decipher. he does not understand or does not know how to respond. she clarifies, rephrases her question. each is struggling to understand the other. “tuna or egg sandwich?” he thinks for a moment. “tuna.” (i wonder if he‟s just guessing. if something as simple as ordering from a lunch menu could be such a struggle, i only wonder how much of his complex treatment plan he participates in deciding. such a disempowering experience, to be unable to provide someone the vary information that forms his autonomy. i can‟t imagine a more vulnerable, more helpless position to be in. in counselling, we often talk about empowering the client and the family. i understand now how language can become such a significant barrier to that empowerment.) in this scene, hospital staff seemed to just come and go in carrying out their duties. it was as if the patient was a mere recipient or subject of the care. as i noted, i am not even sure to what degree he understands what he is being subjected to. although he carries on with remarkable composure while i am present, i can only imagine how uncertain and disorienting this process must be for him. i recall one moment where, it was only through ad hoc interpretation support offered by a staff member and me that the health care team discovered the worries and distress of a patient who was nearly in tears. then again, even with the greatest of language support services, the subtleties of meaning and feelings are lost in translation. hold your breath (grainger-monsen, ) excerpt from minutes, seconds mr. kochi: (in heavy accent, amiably grasps doctor‟s hand) see you dr. fisher… i like you. doctor: i‟ll see you in a couple of months. mr. kochi: (turns to interpreter, in arabic) what about my sore throat? tell him to give me medication. interpreter: (to doctor) he says what about the... doctor: …the sore throat? everyone: (laughing nervously) doctor: (places hand on mr. kochi‟s shoulder, with levity) take plenty of fluids. (laughs forcefully) mr. kochi: (to interpreter, frustrated) i need some medicine. this is a hospital. doctor: (with levity) it‟s what my mother always told me. i‟m telling him. take plenty of fluids. get some rest. interpreter: (translates to mr. kochi) … sometimes this is intentional, and at other times unintentional (grainger-monsen, ). words like cancer become semantically reduced to “masses” and “tumour”. an aversion to carrying a medicine pump is misinterpreted as a refusal to chemotherapy outright. strong feeling words such as “angry” are moderated to become “mass”. mr. kochi: (to interpreter, insistent) he needs to give me medicine also. interpreter: (to doctor, smiles forcefully) … mr. kochi: (to interpreter, adding in broken english) seven months, not take medicine for me, why? doctor: (holding out hand, gesture to end conversation) okay. so take care and we‟ll make an appointment for two months but if you have any problems, then come in sooner. mr. kochi: (to interpreter, hold hands near throat) interpreter: (nervously) still want something for you now. doctor: how about some tylenol? mr. kochi: (raises hands in exclamation) tylenol, oh! doctor: (laughing) he doesn‟t like that. we need something more expensive than tylenol. (turns to leave) okay. anyway, it‟s nice seeing you again, sir. (shakes hand of interpreter) bye bye. mr. kochi: (without words, shakes head) ... as this and earlier stories exemplify, patients who encounter language barriers are often deprived of their very basic human capacity to express their feelings and in turn feel heard. i cannot imagine a greater deprivation in this world than not being heard. in this way, language, or rather the ability to communicate, can be considered a very important mediator of our autonomy. . . perceptions that divide. within a particular cultural context, i am also reminded of the many nuanced and subtle ways in which individual perception shapes the interpersonal connections that are possible. field notes - - i introduce myself as a volunteer and ask whether she would like some company. the patient looked me over for a good few seconds. after a pause, she finally declines. (i‟ve failed her assessment, judgement. “is this the kind of person i would like to allow to enter my space?” i wonder what her criteria are. what are those critical pieces in that first impression? beauty? age? ethnicity? an aura of compassion? whatever it was, i certainly wasn‟t exhibiting them.) field notes - - she comments about our age difference, assumes that i have not come to that stage of considering matters such as death. (i find myself feeling mildly amused and mildly irritated at the same time that she is making this assumption. she attributes to me a level of youthful immaturity that i believe i have passed. i wonder if she is discouraged by her belief that i don‟t get it. i wonder if she feels distant from me as a result. i wonder how her perception of me as an inexperienced, youthful person helps or hinders our relationship. moreover, if i were her health care provider, how would our work together be impacted? i note that her oncologist – the one she seemed to admire and seek advice from – is much older, maybe in his mid to late fifties.) these entries make me wonder how i was perceived by the immigrant young adults i engaged with through this study. from my own vantage point, i share with them in some respects my cultural identity as an immigrant young adult. at the same time, i have never been diagnosed with cancer. i am in fact a very healthy, able-bodied individual, university educated. i speak english fluently and without any discernable accents. there is also my acknowledged role as a researcher; my objective, to acquire some information, some increased understanding from them. i wrote one journal entry on a recent experience i had in waiting for the bus. it evoked some feelings and thoughts that were perhaps similar in quality but certainly not magnitude to some of the themes i have encountered amongst immigrant young adults with cancer. this was no doubt precipitated by my deep immersion in this inquiry for the past many months. this was an experience that i believe deepened my understanding of my role as a hcp to immigrants and young adults with cancer so i have included it as appendix s: journal entry: waiting. in these ways, i perceive myself to be a perpetual outsider who will never truly understand their experiences. then again, i recognize that i can never fully understand anyone‟s experiences because i am not them. i have not grown up in the cultural context that they did or experienced the many things that they have. i do not hold the beliefs or values that they do. maybe i should just abandon this idea of being or becoming an insider. i should just acknowledge that i am a perpetual outsider and move on. i could even be proud of this fact, accept my position of not knowing and begin to connect with someone then without preconceptions, assumptions or past knowledge to mislead me. this sounds as sensible as it does reckless. where do i situate the mountain of studies and reviews that have come before me on immigrants and young adults? what would be their usefulness? so many questions but no answers. i am aware that irrespective of my own identification as insider or outsider, the person with whom i am trying to connect will inevitably have his or her own perception of me (egharevba, ). with some, they may see my dark skin and black hair, and immediately believe that i can understand their experiences, that a connection is possible. with others, as was the case in the previous two encounters, i may be dismissed because i am perceived as an outsider. it discourages me to think about how little of these interactions is influenced by my own concerns. then again, this also seems to be quite a liberating thought, that someone declining my offer of company or care may have little to do with me. i chew on that thought for a while. it certainly relieves me during those days in which no one seems to be interested in my company. of course, this works in the other direction as well. a patient‟s willingness to engage with me may often have nothing to do with me but much to do with their own circumstances and openness. i welcome this line of thinking as i have too often sat after a counselling session ruminating over what i did not do effectively and how things could have been better. the strong, critical voice returns. i take ownership of certain outcomes that may not be mine to own. my failure, in turn, paralyzes me. sometimes, it is the client‟s responsibility. sometimes, i need to abandon the self-blame. i reflect back on my experiences as a volunteer, being driven by a sense of being needed, feeling gratified when someone expresses appreciation for my company and feeling dejected to have my company declined. as a care provider, my very identity is supported by people‟s need for me. perhaps this pressure i put on myself is unnecessarily harsh. part of me wants to accept this conclusion, but another part refuses to. i look back on my time with nímāmā, the brief weeks that we shared in our lives. i feel a tremendous guilt in not having connected in the way that i should have, in not having been a support to her in the way that she needed. i want to acknowledge that much did not have to do with me, but part of me refuses to do so. i think back to a scene between a patient and his family member. at the time, i found myself being moved so much by their interactions but it was never clear to me why. now, having had more time to reflect on my own narrative, it seems a little clearer. field notes - - there is a patient and what seems like family member sitting on the couch in front of me facing away. they sit quietly. the family member makes short remarks every now and then in a soft, delicate voice. there is almost no response from the patient. (i even wonder if he‟s asleep, drifting in and out of consciousness from some extreme fatigue, not even being able to sustain a conversation.) i listen more closely. there are responses – he‟s not asleep – but they‟re barely audible and short and minimal. more of an effortful, barely there “mmm” and “un hun”. it seems as though both are trying to cling onto a conversation, some sort of verbal connection that they both lack the energy and will to sustain. the family member‟s occasional remarks therefore seem awkward, a search for words to fill the emptiness where no words can be found. i feel the uneasiness, the exhaustion, the emotional pain. (i think about my parents, about the prospect of having them only in physical form, but without the emotional connections. the death not of a body but of a relationship. i would be utterly devastated.) i sense in the depth of me a profound longing to make it better for them, but i can‟t. i feel so helpless, so useless. part of my sadness here related to fading connection between these two individuals. i felt sad for them, for their dying relationship. then again, maybe it was not them that i was sad for. maybe in this family member, i saw myself, a care provider for someone with cancer. as i did what i could to build a relationship with nímāmā, i felt her slow pushing away from me, her no longer needing me. the more she pushed away, the less needed i felt. i wanted to make it better for her and yet, i could not. as i consider my own despair in these circumstances, i wonder about the many other family care providers such as the individual above who arrive at a point of feeling not needed. i wonder what their experience must be like, how devastating it must be for them. when we have no role, the divide between us becomes boundless. . . finding clarity amidst confusion. i began this section wanting to explore the many factors that may contribute to the separation and isolation of people in the experience of cancer. if i can understand how these gaps arise, i may be better prepared to bridge them as a hcp. i realized early on how our disposition to handling people with care produces interpersonal divides. i explored how metaphorical masks become used by patients and others in order to convey positivity, normalcy, while concealing fear and uncertainties. overlaying these behavioural factors are also contextual factors. this includes cultural norms and practices that direct a certain expectations of all roles involved. often times, it is the cultural “outsider” who enters this graceful dance that will experience certain missteps or inflexibilities. as i near the end of this section, i feel compelled to distil for my readers all of these reflections down to some useful lessons learned, a take away message. what do these last many pages really amount to? how do i as a hcp go about establishing meaningful connections with patients or their family? honestly, i am not quite sure. there are too many factors to consider, too many individual narratives to draw from. i am confused. it is like my reaction to seeing the performance handle with care? for the first time. journal entry - - i found myself feeling lost. i was unable to keep up with its rapid change of scenes, curt dialogue, plurality of voices and frenetic pace. even with intermittent pausing and rewinding of the video, i felt dazed like having been put through a spinning amusement park ride that revolved much too fast. i would have to watch it again, and again i did. instead of providing clarity, however, it remained ever confounding. for a long time, i was struggling to figure out why i wanted more. i understood the words and the exchanges, the content was clearly articulated, the performers were convincing, and yet the message eluded me. then it occurred to me while i was volunteering at our local cancer agency. my goal is to become a competent cancer care provider. i wanted the video to teach me something. i wanted to know how to handle patients with care. and yet, this video was not providing me that neat little handbook. the plurality of voices in the performance contributed to what amounted to a cacophony of differing experiences. there were often divergent views expressed by the breast cancer patients about issues like their desire for information, autonomy or involvement by their by cultural outsiders, i am referring to people who may be unfamiliar with the norms and practices of the medical institution. this might include newly admitted patients, immigrants or previously healthy young adults. family. as noted in one comment by a doctor, what constituted help “varies a lot” between patients as well as for a given patient at different times. i realize now that the purpose of the performance was not to provide a handbook or manual for working effectively with metastatic breast cancer patients but rather to confuse and raise doubt. as kleinman and benson ( ) point out, [cultural] competency does not entail “a series of do‟s and don‟t‟s that define how we treat a patient of a given […] background” (p. ). it is not about trying to learn to care through guides, textbooks or at arm‟s length. rather, the performance invites us to get to know the patient or family member and their viewpoint, to ask the question “what matters most to them in the experience of illness and treatment” (p. ). that is it. maybe instead of searching for that illusive path to bridge the divide, i ought to just invite myself to be curious, to ask questions. if anything, i have certainly left myself with that lesson. i am confused, and humbly so. . . practice dying. i reflect back on the many stories that were shared with me, the many experiences that i witness. if there is one message that serves as a lesson or reminder to me in creating meaningful connections, it would be the disarming encounter i had with one particular young woman with a cancer diagnosis. field notes - - as she shares her experience, it strikes me how healthy she looks, how youthful she looks. i would‟ve never guessed she has cancer. she says that she doesn‟t let the disease weigh her down, even after five years of cycling through remission and recurrence. expresses her annoyance with others who adopt the victim identity, “practice dying” as she calls it. (i find the expression cute. it sticks with me.) i put forward the idea of a hospital as a jail for some. she thinks the idea ridiculous. she feels incredible freedom to eat what she wants, to meet with friends at all reasonable hours. (i‟m impressed by her vibrancy, her energy, her spunk.) she continues on about her adult children. (i‟m startled by her mention of adult children. she looks so young. it wouldn‟t be a stretch for me to consider her a peer, someone to go hiking with, or party downtown with.) we talk about her changing relationship with friends and extended family that happened after she was diagnosed, how some friends became strangers. she puts a real premium on normalcy, on not being treated any differently than when she didn‟t have cancer. she expresses her disappointment, disgust when people come in and express sympathy or concern for her illness. she greatly values her friends who visit her in hospital and treat her like she was at home, without a disease. (i‟m impressed with the way that she is able to continue on with life, to look ahead to the future, to make plans, to travel. the way she expresses her dissatisfaction with the medication, critically evaluates them, takes only what she needs. with an illness that seems to rob people of control of their body, their life, she has maintained it. she feels secure with herself, her body, her beauty. she has the energy of a fighter. maybe that is what we all want. to be treated as a normal human being, not a patient, not a masked stranger, not a fragile object to be handled with care. that message resonates with me. . . summary. the title of the production that began this discussion, handle with care? reflected the approach care providers may adopt in interacting with a person with cancer. they are treated like fragile objects, things that can easily break. in turn, we become careful, censored, restrained. we adopt a false, disingenuous optimism. we keep to ourselves our own aches and pains. we pretend that our lives are the same, without interesting changes. we do not want to bother you, to sadden you, to make you feeling left behind; and as a result, we do all of this. for an expansive reflection on my experience of protecting others from my pains, refer to chapter . . protecting each other. . deconstructing the health care provider field notes - - in the lounge, a woman is lying on the couch by the window. a thin blanket is draped over her body. the couch is not entirely long enough and so she lies in a semi-foetal position. her arms hide her face. i watch her for a period. she remains motionless. she is asleep, i gather. (not just briefly resting her eyes. she is deeply asleep, and yet, not comfortably so i am guessing. comfortable would be lying stretched out, arms over her head, airways unobstructed. no, she is sleeping where she can, adapting to the changed and changing circumstances. if life was normal, she‟d be sleeping at home, body outstretched, thick warm blanket, sleeping clothes. no, this is not her norm. she has adopted a new norm, perhaps reluctantly, resentfully, maybe even angrily. this is not a culture she wants membership in, this being a family member of a cancer patient but she has been forced to be a part of this. i feel sad for her, as she sleeps uncomfortably, abnormally. this is her momentary respite, respite from her resentment, her anger, her cultural membership.) this scene of a woman sleeping uncomfortably on a couch in a lounge of the cancer agency was resonant to me. it represented for me the tremendous efforts and sacrifices made by family members who serve as company in the patient‟s journey of illness. the significant physical and psychological tolls that the cancer experience may have on family members and other loved ones have been thoroughly substantiated (stajduhar, barwich, & fyles, ). in acknowledging the significance of individuals in the lives of patients, i find myself thinking about how i am always fumbling for a term to best describe them. family members include some people but necessarily exclude others, even if the term was subjectively defined. what about loved ones or significant others? they imply a certain evaluation of the quality of the relationship. that would also exclude certain people who may contribute in meaningful ways to the patient‟s journey. i struggle to find the right term to most accurately capture these individuals, and their relationship and responsibility to the patient. but then, there is the term health care provider (hcp). what do i mean when i refer to someone as a hcp? who is a hcp anyway? best to figure this out as i have self-identified as an “emerging hcp” with the accompanying implications of its cultural membership. this need for clarity led me to the current section on deconstructing the hcp. in what follows, i examine how i and others use the term hcp, and the impact of our use of this meaning may either support or hinder cancer care. . . who are health care providers? i began with my own conception of the hcp. reflecting on my earlier search for a suitable term for the many supports of a patient, i considered hcp. on first pass however, i intuit that describing a family member as a health care provider seems somehow demeaning or detachedly cold. it is a strange reaction. perhaps, this is related to my association of hcp with the institutional and medical systems, which are somehow distinct and separate from the family system. the term hcp conjures up images of doctors in lab coats and nurses in patterned uniforms. health = medical systems > nurses and doctors. that‟s interesting. i continue to subscribe to the dominant semantic practice of equating health with medicine in spite of my cultural identification as a counselling psychology student and mental health provider who maintains the view that health is a complex construct with multiple dimensions. i find this realization disheartening. it is perhaps reflective of how pervasive this biomedical culture is in our society and how we may subscribe membership to cultures in spite of our reluctance or misgivings. so, my own colloquial definition of hcp would include doctors and nurses. no doubt, the list could expand to include a number of other occupational titles. as i sat around the discussion table for my course on interprofessional psychosocial oncology, i thought about the social workers and occupational therapists who were not only my classmates but also possible colleagues in an interprofessional care team. through our discussions, i became aware of the valuable knowledge and expertise these professionals are able to contribute to improving patients‟ overall health. these professionals are no doubt hcps in every sense of the word. with this new awareness, i was certain that there were more members of this health care team. looking back over the many cancer agency paraphernalia, i came across few lists that made me feel quite heartened. i am taken aback by my association of the biomedical culture with detached coldness. to refer to someone as a health care provider is even a pejorative in my mind. why do i harbour such disdain for the medical culture? perhaps it has to do with my experiences in baltimore with nímāmā, with their detached coldness in their focus to service her medical-physical needs and in the process, overlook her more painful psychological needs as well as the need of her family. as an emerging health care provider and a family member, i would imagine that such an attitude of disdain and distrust would affect my willingness to work collaboratively with others in an interprofessional care team. moreover, i wonder how much my negative attitude exists in others who share my cultural affiliations to family member and counselling psychology. what fosters this perception of detached coldness? this would be a worthwhile research inquiry. image . your cancer care team. (n.d.). retrieved march , , from http://www.bccancer.bc.ca/ppi/infofornewpatients/yourcancercareteam.htm http://www.bccancer.bc.ca/ppi/infofornewpatients/yourcancercareteam.htm it is reassuring to think that there is such a diversity of professionals (and accompanying knowledge base) supporting patients and their family. given that health is a complex and multidimensional construct, no single disciplinary approach would suffice. at the same time, the extensive list of hcps makes me uneasy. it is falsely reassuring, creating this illusion that because the system is comprehensive, patient care is improved. unfortunately, interprofessional education and practice is an ideal that often is difficult to implement. in our weekly discussions, many challenges were raised in carrying out interprofessional collaboration, including a lack of time; a lack of awareness of others‟ disciplinary knowledge or expertise; a disciplinary chauvinism; geographical separation of team members; any of which could derail efforts to maximize the effectiveness and comprehensiveness of patient care. clearly, better care is not just about having a huge interprofessional team behind a patient. moreover, i have often found myself feeling extremely daunted by the complexity of a case study while trying to answer questions like “which hcp is best suited to address this issue?” and “who should take the lead?” diagnosable distress in a patient, significant functional impairment, outstanding tension with family members to the point of estrangement, unresolved grief issues. one hcp expressed anguish while reflecting on a particular case. “doing short term counselling with someone from another country with cancer, there is so much to explore about their beliefs and attitudes… even process their being in counselling. where do i even begin?” it is in these moments of despair that i find myself questioning the value of what i can provide as a hcp. it is in these moments that no well-functioning interprofessional team in the world seems adequate. one particularly poignant interaction comes to mind. field notes - - i enter a room. there are two beds here. in spite of the brightness of the day, it is unusually dark in this room. i notice the blinds drawn, partly blocking some of the light from coming in. the bed by the window is occupied but the curtains around it are drawn for privacy. the little natural light that is able to enter the room is therefore further prevented from reaching the bed by the door. i find an older woman sitting there. she is quiet, present, seemingly in thought. as i approach, she notices and turns her head towards me. she has a gentle and patient smile. i introduce myself. “would you like some company, someone to sit with?” “why sure,” she responds without second thought. as i pull up a chair next to her bed, i cannot sense any judgment from her, the sizing up that most patients do when i offer my company. i admire her openness to me. i wonder what makes her so willing to accept. i find out that she is here from a tiny community up north. her tone is soft, patient and friendly. i feel at ease. soon into our conversation, another woman arrives. the patient introduces me to her sister, comments that she‟s been enjoying her conversation with me. i‟m delighted that my company is welcomed. at the same time, i want to leave. i feel like i intruded on the family visit and now am standing in the way of them. i‟m surprised that this patient didn‟t mention anything about her family being here. patients usually make it known that their family has just stepped out or has just visited, or will be coming soon. it‟s a polite way to say, “i don‟t need your company. i‟m well supported for now.” it occurs to me that in the hierarchy of valued company, i‟m pretty far down from the family member. recognizing this, i feel compelled to leave. i don‟t want to be the barrier between these two sisters. just as i‟m about to wish them well, she finds the chair closest to the door and sits herself down there a great distance away. i‟m momentarily stunned, confused. she‟s supposed to stay standing so that i can vacate my seat for her. i‟m not sure what to do now. does she want me to stay? does she not get along with her sister? she doesn‟t even try to move her chair closer. i try to make do, resuming the conversation with the patient, updating her sister as i go. this is new territory for me. i‟ve only ever been company for patients themselves – but both sisters make it feel so easy as though it‟s perfectly natural for me to be there. we continue on for a while the three of us. the subject of food comes up. i note that there are a few places to get food. i offer some snacks. they gratefully accept so i head off to get some cookies and juices. i greatly appreciate and admire their unconditional acceptance of me. as i return to the dimly lit room of the two sisters, i notice the chair by the door empty. she is beside the bed now, closely clutching her sister on the bed as a nurse works on setting up an iv drip to deliver what is probably chemotherapy. their embrace conjures up the image of two penguins huddling tightly amidst a barren land, the cold winds howling around them. the only support they have is each other, only the warmth of their bodies keeping each other alive. they don‟t even notice me. i don‟t want to be noticed. approaching the door quietly, i leave the snacks where they can be found and promptly head on my way. i blink to keep the tears from accumulating in my eyes. “two penguins huddling.” it is a vivid image. i quiver thinking about it. in spite of their remarkable openness in inviting me, a complete stranger, into their lives, their support for each other represented a care that is irreplaceable. this scene reminds me of the immense importance of family members. their presence and the care that they provide are irreplaceable. for me, this means that i must always work to include the family members in the care process. . . burdens on care providers. i also think about how the lives of two penguins separated from their pack would be inseparably co-dependent. in order to survive, both would have to stay alive to provide warmth to the other. if one is to perish, than so will the other. this idea of co-dependency is perhaps best illustrated in the many studies on magnitude of grief experienced by surviving care providers, including parents of children with cancer (kreicbergs, lannen, onelov & wolfe, ). this display of commitment to family is a value that i resonate with. i am able to identify myself in their narrative. growing up with my parents as an immigrant family in a community where many had generational ties, i often did feel as though we were the few penguins huddled together, helping each other survive. moreover, the cancer care community is just recently coming to acknowledge the heavy toll of the cancer experience on the care providers (stajduhar et al., ) as well as on children and siblings, who are often overlooked amidst the attention on the patient (hamama, ronen & giora, ). as reflective of the currency of these considerations, an increased attention to the entire family system was uttered as a rally cry at a recent psychosocial oncology conference i attended. a practitioner working in palliative care challenged the audience to expand our scope beyond the individual patient to the family members, which necessitates a paradigm shift to think of the cancer experience as continuing after the death of the patient. i am reminded of many instances of the immense pressures endured by family care providers. i think about my cousin, whose tensions with his mother and partner became magnified in the face of his mother‟s illness. i think about an immigrant young adult i spoke to, whose mother put her life and career on hold, making significant financial sacrifices to leave her homeland to care for her child in a foreign country with different languages and customs. i think about a quick and wordless encounter in the lounge of the cancer agency that called out to me more than any words ever could. field notes - - a man is sitting quietly on the couch in the corner. he speaks softly into his phone, his voice gentle, comforting. i catch only his last words. “you be strong, grandma. you be strong. we‟ll get through this.” the man flips closed his phone, stands up from the couch and proceeds to walk out the lounge. as he walks by, i hear a heavy sigh. to me, it is the most heavy, emotional cry of exhaustion, of anguish. my heart sinks. it‟s gut-wrenching. i feel a profound despair, a great sympathy. i hear a grown man carrying the great burden that he must bear, while feeling the duty to project a sense of strength. otherwise, the entire structure collapses. the depth of this man‟s sigh, the lethargy with which he got up off the chair, the heaviness with which he walked across the hallway. to me, these were all signs of the heavy tolls that this man bore for his family, for the entire structure that depended on him. i find my heart goes out to him. his linchpin role within the family is a sort of cultural membership that i share with him. our narratives need not be the same and he might never believe this, but my perception of our shared membership creates in me a compulsion to reach out to him, to support this man who bears it all but cannot, at a risk to his family, reveal his exhaustion. for me, this is a striking reminder of the significant role that i may serve as a hcp in supporting both the patient as well as their family. often, within our frantic efforts to ease the pain and suffering of patients, we tend to forget how stressful the process is on people surrounding the patient (practitioner, conference key note). they will be going through their own grieving process. the loss is perhaps of a mother or father, sibling or child; and the subsequent role that their family member had filled in the family or the support that they may have counted on. in considering the man who tries to comfort his grandmother while he is near collapse under the weight of his tremendous responsibility to be strong for his family, supporting the family members will have manifold values. they are valuable members of the hcp team and should be acknowledged as such. . . volunteers as care providers. who are hcps then? so far, they include what i perceived as the medical staff, members of the interprofessional professional team and family members of the patient. this growing list of individuals prompts me to consider whether there exist limits in this search for hcps. a very lengthy volunteer experience comes to mind. it began in the lounge while i was writing notes to myself. field notes - - a woman abruptly appears in the lounge. she looks familiar but i can‟t tell for sure if she‟s a nurse. she asks if i speak chinese. (the way she asks her question takes me by surprise. there‟s no pretext, she‟s to the point.) i pause for a moment before responding. “well i speak mandarin.” as though she doesn‟t really care or doesn‟t want to care, she responds in curt terms that there‟s a patient who speaks chinese who is trying to communicate something that she doesn‟t understand. my helping instincts immediately become mobilized. as i confront what is expected of me, i‟m uncertain whether i can be of any help, especially if she can only speak cantonese. i quickly try to explain that to her. i‟m also nervous about my mandarin fluency. what if she speaks mandarin but her requests are complicated and i screw up? what if i mistake her meaning, relay the wrong message? my body tenses but i force myself onward, wanting to help in whatever way i can. if not me, then who? i stand up rigidly, turning to follow her. a man sitting on the couch speaks up. he can help. “so you speak cantonese?” both. my body instantly relaxes. i offer him my role. he says that he can help if i have any trouble. (so, he‟s hesitant. i wouldn‟t blame him. who knows what this patient needs.) i continue on out the lounge. we speedily walk down the hallway. she leads the way, not looking back. no dialogue, no further explanation about what she suspects. (i feel slightly irritated that she hasn‟t even checked in whether i was willing, comfortable or capable of helping. it‟s as though she‟s passed the problem onto me and so now she no longer has any responsibility to it. the hand off. not my problem anymore. i wonder if she knows that i‟m a volunteer or if it even matters?) we enter the room. i arrive at the patient‟s bedside. “can you speak mandarin?” i ask in mandarin. “mandarin,” she responds, clearly not comfortably. i ask again in a different way just to make sure. her response is tentative, broken. okay, back to the lounge to call for assistance. “nope. she speaks cantonese,” i say to the man who spoke both dialects. (i notice that there‟s a sense of urgency in my tone and pace. it‟s that i want to bridge this communication gap, to relieve her voiceless-ness as soon as possible. what if she has something incredibly pressing to express? what if she is in pain?) he follows me. i notice that the staff woman is not with me now. (where did she go? could she not offer more information?) i guide him to the room, expressing my appreciation for his help en route. he moves right up next to the patient bedside and bends down to the patient‟s level. it not only allows him to hear more accurately but also conveys a sense of respect. (i admire his presence of mind or perhaps his natural instinct to do this. his actions make me reflect on how i had just stopped at the foot of the bed, ever distant, ever impersonal. i wonder how much of this the patient experiences, how significantly it changes the patient‟s experience of connecting and relating with another human being, as opposed to merely communicating.) they speak for a long time, alternating back and forth. i cannot even begin to guess what they are discussing. every time she speaks, she grimaces. her eyes squint not so much in bitter frustration but rather in sadness or anguish. her statements are lengthy and unbroken like the flow of water from a dam that has been restrained for much too long. he responds calmly and softly, without hesitation. (it seems to me as though he knows what to say, how to comfort her.) they continue speaking. i remain at the foot of the bed, completely ignored by them. i‟m tempted to leave but it doesn‟t seem right. i feel responsible for seeing this interaction through to resolution. besides, i can‟t just abandon this guy who so generously stepped into this role. what if he needs help in some follow up action? what if he needs emotional support or to debrief a troubling conversation? no, i need to stay put. despite my being forgotten about in their conversation, i still have an important role still.) as i stand there patiently, i notice the staff woman walking around the room. my thoughts turn to her. she moves busily around the room wiping the floor, cleaning the bathroom. (so she is a caretaking staff, not the nurse. the realization somehow accompanies some degree of forgiveness, as though it is expected for a caretaking staff to be so curt and that more should be expected of a nursing staff. i catch myself using this classist stereotype. it‟s reprehensible. i‟m ashamed to find myself thinking this way.) (i wonder what her matter-of-fact behaviour is due to. it could just be her personality, as in a disposition to act in a particular way and she did not notice the irritation i felt because of it. then again, it could be a function of the cultural context that we‟re in. “never look for a psychological explanation unless every effort to find a cultural one has been exhausted” as anthropologist margaret mead (mead, p. ). perhaps this is the prevalent culture amongst health care providers who work in a cancer care setting. we step in where we can despite our distinct job titles or professional training. perhaps in this aspirational interprofessional care context, our responsibilities ought to remain intentionally fluid, not rigid. these interpretation tasks get being filled by those who are able to in the moment. then again, could this fluidity be reflective of a system that does not have clear guidelines, protocols to follow? this cantonese speaking patient seems to have experienced a communication breakdown over an extended period of time, not just in this instance. is my fluidity reflective of a gap in the system? moreover, what about this handing off of responsibility that i‟ve experienced.) my attention returns to the conversation. her statements are now shorter, his longer. (something seems to have changed in their relationship. he seems to no longer be in the role of listener but is instead providing information or advice or something. i begin to feel uneasy, concerned whether this may be what the patient needs right now. maybe so. who am i to judge, not understanding a word.) he is still talking. he pauses. i look to her reaction. her expression seems to be of despair; cheeks clenched upward, eyes squinting, jaw tense. she seems to be exerting a great effort to hold back whatever she‟s feeling inside, to not break down in tears and yet her cheeks and jaw begin to quiver. (i still don‟t know what is going on. i feel a profound sadness, however. a sadness that words can‟t describe.) he offers a few words, perhaps to console her, try to instil hope in her. (i wonder what he‟s feeling right now. discomfort? i wonder how much if his words of console are for her and how much for himself.) he steps backwards. nods. reaches out to touch her, the first time in this interaction as well as the last. he walks away. i follow this time. i thank him for all his help. apologize that this probably wasn‟t what he had signed up for. “no problem. i‟m a health care provider too.” (ah, i see. that‟s why he seemed to have so much to say to the woman. judging by his clothes, he must be social worker or something.) medical geneticist. “i don‟t get to talk to patients very much. (surprised. interesting that he considers himself as part of the team as well.) he asks me about what i do. “volunteer.” he rephrases his inquiry to get at what he means. “what do you study?” i hesitate, seeing where this is going. “counselling psychology,” i disclose rather reservedly. “ah!” he remarks. “so you should have been the one in there.” “well it‟s the language thing,” i admit trying to make a joke out of it but feeling shameful on the inside. it‟s a forced admission. secret let out again. my feeling of self-worth takes another clubbing at the hand of myself. feeling responsible, i outline that i‟ll take what i‟ve learned and pass it to the nurse. can‟t just let this conversation go unheard. i clarify what he has learned from the conversation. frustration with not being able to clearly communicate with hospital staff, anxiety with not knowing road ahead, regret that even when her son is around, many conversations go over him, suggestion for an interpreter. it strikes me how familiar and basic her sentiments are. people just need to be listened to, to have someone present. my gut wrenches. i wish i could have been that for her. the accumulation of encounters such as this one, although unsettling and confronting of my shortcomings, has helped me acknowledge the privileged position that i occupy as a bi-ethnic individual. i could, with some effort to improve my mandarin fluency, support this population that seems so very underserved even in a health care community as diverse as we have here. refer to appendix e: journal entry: privileges and responsibilities for a more in depth discussion about how i have found ways to apply myself as a result of this inquiry. “if not me, then who?” amongst other themes, this question of responsibility was central to this encounter with a patient whose english proficiency served as a barrier in care. as members of the ethnic chinese culture, this hcp and i felt compelled to help this woman in her time of distress. this was not part of any job description but we stepped in because we could. i myself felt compelled to stay in the room even though i had no skills to contribute. i wanted to support this individual and complete the follow up. as i questioned at the time, it was not clear who was there to support the client. such is the risk when many people are involved in the care of the patient. in my interprofessional psychosocial oncology class, this diffusion of responsibility or lack of clarity was considered a major contributor to the ball being dropped in care. who is responsible for helping this individual? i feel infuriated just now in hearing myself even ask this question. who is responsible? when someone just needs to be accompanied and understood, why is it even about a responsibility as though it appears on our job descriptions. the question shouldn‟t be “who is responsible?” but “who is willing to respond?” at times, it is up to those who are capable and available to maintain an openness, a desire to take responsibility. any person can make a difference. i can identify why taking responsibility is such an important point for me. it goes back to one very emotional exchange in baltimore. it is friday afternoon. i only know this because i overheard one of the hospital staff rejoice about it as i was walking about the hallways earlier. otherwise, i would not know. the days are all the same within these hospital walls. each day blends into the other, each meal infringes upon the next. i am now cozying up on this my makeshift bed of a lazyboy. reading a novel that i found in the library. usually i fall asleep while reading but these days, i‟m well rested, overly rested, getting all the sleep that i need. it has been a rather quiet afternoon. on the encouragement of her doctor, nímāmā and i tried for a brief walk around the ward. we didn‟t get too far until we had to come back. exhausted. i hear a quiet murmur. my attention turns away from the story of conspiracies and murders. i hear it again. not a murmur though. a moan. it‟s nímāmā. she‟s in pain. i get up from my bed and approach her. “how is everything?” no response. her eyes are shut, her body hunched over, her face grimacing in a sign of great pain. i tremble seeing her this way. i feel some remnants of her pain. “i‟m going to get the nurse,” i try to assure her, not even sure if she can hear me behind the veil of her pain. my pace is fast, as fast as the institution would allow. approaching the nurse station, i identify nímāmā‟s nurse. she seems relaxed, engaged with her peers, probably about their christmas festivities. “she is in pain. could you come quick.” “it is about time for her morphine. let me page the doctor to check if it‟s okay to give it to her.” her words seem frustratingly unhurried. a rhythmic southern drawl. there‟s nothing more to say. i head back to the room. her state is unchanged. “they‟re going to check with the doctor whether it‟s time to administer your morphine,” i relay to her. too anxious to sit, i pace around the tiny room. nímāmā continues to moan. i glance at the clock. fifteen minutes pass. my anxiety and discomfort and irritation continue to build. thirty minutes. forty. the pressure within me is reaching a breaking point. i rush out the room and back to the station. she and her peers are just as they were before. i try to restrain my voice, try to remain cordial. “she is still in pain.” i‟m not sure what else to say to not irritate them. “oh.” she smiles back. “i checked with the doctor and your aunt isn‟t due for her morphine for another two hours.” my teeth clench. i draw in a deep breath, chest raised, readying to explode. “abort! abort! it‟s not going to help,” a voice screams in my head. i heed it. i‟m speechless, shocked by her seeming indifference to nímāmā‟s pain, to the gravity of the situation. why wouldn‟t you just come and tell us then?! then at least we‟d know to expect it! i want to scream all this at the top of my lungs. i want to teach her a lesson with my fury. i want her to hear me, but she doesn‟t. i restrain myself. it won‟t help. i just swallow my fury, turn around and go back to nímāmā. i felt completely powerless in this interaction. what could i do? protest in outrage? no. as my voice of reason warned, it was not going to help. as a family member, i felt my voice silenced in light of the circumstances. our nurse had occupied a position of control over the care we receive. she may choose to be more open and communicative, or to leave us in the dark. my protest would have if anything aggravated her. we would have been deemed the “difficult family”. our care would have suffered as a result. . . a willingness to respond. taking responsibility has since been quite important in our relationship. too often, such as in that interaction, i have experienced being passed off to another without support and follow- up that i felt compelled to stay with that cantonese speaking woman and hospital staff until the resolution of that situation. i was just a volunteer, but even in this role with neither knowledge nor control of care, i felt more empowered than the patient. the patient was completely powerless. her language barrier robbed her of the one source of her power, her voice. with openness and a willingness to adopt responsibilities not listed in our job descriptions, we were as i recall this situation, i am confronted with the painful fact that even with my most fervent effort to help that woman, i failed her. i failed to return to her after speaking with her nurse to assure her that her voice was being heard. i have done no better than the nurse who responded to nímāmā‟s cry for morphine that day. as a hcp, am i (are we) doomed to let down my patient? able to give her voice. one language-challenged volunteer and a medical geneticist on his lunch break. such stories are to me heartening reminders that any individual has the power to affect significant impact on the care of a patient, whether it is by offering some bridge between languages or in simply being willing to listen. as an example of the latter, i recall one memorable encounter with whose life journey was eerily similar to my own. field notes - - i return to the waiting room, feeling lethargic. i notice that the teenage son of the patient who had just gone in is sitting on the couch. i ask if i can join him. he accepts with minimal acknowledgement. i sit down. just a moment passes and suddenly, he starts talking to me. i‟m told of his upcoming year, his needing to work hard for the first half of his high school grad year with all the applications. i listen, recognizing my role as the listener, feeling in a way confident that i can do this competently. i empathically reflect. the conversation takes a turn. he tells me about being here for his mom, their strained relationship, her worries about everything these days, his frustrations/resentment, wanting to get out of the house, hopes for his mother to go back to china where she would be supported and connected with family, his burdens/responsibilities going into grade and needing to get good grades, his university considerations given his mom‟s wishes and his own, his feelings of being stretched by his own interests and that of his mother‟s, the support of friends on his illness, the two-faced existence that he lives. “everybody thinks i‟m fine.” (as we talk, i‟m struck by his maturity, his mature articulation, his knowledge of the family‟s circumstances, his consideration of different points of view. i weigh the various responsibilities i have in my volunteer role and reassure myself that i have to be here for this person now.) we speak for what seems like half an hour. there are contemplative silences which don‟t feel uncomfortable. i comfortably allow the space, knowing that he yearns to fill it. he seems to be thinking. when he begins speaking again, his pace is regular, as though he‟s not rushing to fill an uncomfortable silence. this is honest and raw, not scripted. i stay with him. (i‟m startled on the inside. we didn‟t even bother with names. i‟m now feeling uneasy, wondering whether i‟ve stepped over my boundaries as a volunteer. i‟m concerned about him, his circumstances, his telling me all these things. do we need to find a private room to talk? will he say something private that he‟ll regret not being able to take back later?) the conversation reaches a natural pause. he needs to go check on his mom. i say that i‟ll be here. (it doesn‟t feel like abandonment, just a break to recharge.) we finally introduce ourselves, shake hands. i go for a walk, quickly trying to decompress. something heavy has been put out, unexpectedly. i feel such tremendous sympathy for this teenager, this young man. we share so many cultural memberships. he is his family‟s cultural linchpin, serving as an interpreter, an advocate, a peacemaker, a mediator and now a care provider for his mother. he has been thrust into circumstances, forced to take on heavy responsibilities way beyond his years. there are so many parallels between my own narrative and his. perhaps that is why i felt so moved and so compelled to reach out to him. i did not have to sit down beside him. i could have easily opted to give him his space, seeing how troubled he felt. but i did choose to sit next to him. conversely, he did choose to accept my sitting next to him and to share his story with me. what caused him feel such a degree of comfort and safety that he could reveal himself in such a way? maybe he had, as i did, recognized our shared cultural memberships and felt assured that i would understand, that we would speak the same “language”. then again, maybe it was just simply my young age. one way or another, he felt compelled to reach out and i in turn expressed my willingness to receive him. since that encounter, i have also reflected on the significance of the green volunteer vest that i wore that day. it is by no means an insignificant aspect of the way that i was perceived by this young man. like the head covering for a patient, the lab coat for a doctor, the patterned uniform for a nurse, the hair net for food service staff, the white uniforms of porters, the blue jumpers of maintenance staff; my vest served as a visible identifier within the cancer agency and to him. moreover, they serve to facilitate communication. thinking back to when i first began at the agency, i had struggled greatly to locate myself, to find the right person to talk to. as i learned about these identifiers and countless other more subtle cultural behaviours and practices, i felt more oriented, more empowered. for a patient or family member who does not understand this language, i can only imagine how disorienting their experience must be. what if this young man felt compelled to share his story for no reason other than the fact that i was a volunteer? this seems to make sense. in this convoluted hospital setting of health professionals and staff of various flavours, with their respective responsibilities and agendas, volunteers occupy a significant and unique role. i was prompted to think about this in an inspiring conversation with the volunteer coordinator at the agency. it‟s not about [paying volunteers] because the minute i pay you, it changes the balance of the relationship from what you are able to have right now with the patients and caregivers in the building… and it‟s one thing that i hear from patients and caregivers all the time when i chat with them or when i see the comment cards that they write… how much they‟ve appreciated talking to i have experienced a number of encounters at the agency where, in having been identified as a volunteer, i was addressed as such. there have been a whole host of reactions to this recognition of my position. in some instances, hospital staff had expressed appreciation for my efforts and welcomed my inquiries. in other instances, i was quite abruptly dismissed a person perhaps for taking up her time. i suspect that my apparent youthfulness also contributes to my being dismissed in some cases and that if i were wearing a white lab coat, things would be quite different. this entire train of thought makes me wonder if this inadvertent discrimination is also experienced by patients, that the way that they dress or appear may either advantage or disadvantage their care. i have certainly heard many young adults with cancer express anger in being dismissed by their medical care providers as not being sick, often leading to delayed and misdiagnoses. someone who is “just like me. just a normal person who is not here to poke me, prod me or document everything i say.” that‟s a real comfort to people that can‟t be done by anyone else. image . excerpt from diary of a young woman with cancer. this is a startling reminder of the privileged position occupied by unpaid hcps who may offer support not because it is in their job description or that they have to, but that they want to. such optics make a world of a difference to patients and their caregivers. . . the many faces of care providing. so, who are hcps? as suggested by the preceding stories and comments, perhaps anyone can be a hcp. anyone can provide some care or support or willing ear to a patient or family member that will provide them comfort, relieve their anxiety, reduce pain and suffering. anyone can be a hcp. volunteers and family members may in many ways provide a quality of support similar sentiments of appreciation were expressed for peers in support groups. at these gatherings, they found support, willing listeners and normalizing experiences, all free from the loaded relationships and expectations of their “real life”. and comfort to the patient that no paid staff member ever could. for me, this point was powerfully reaffirmed on a sunny morning volunteering in the chemotherapy waiting room. field notes - - a patient asks me about head coverings. she seems of south asian ethnicity. they‟re free to take, i respond. having dug through supply, she‟s disappointed by lack of cotton coverings with a rim. they‟re mostly knitted. either too warm for summer or lacks a rim. i tell her i‟ll look around. she thanks me for my kindness. (it feels sincere. i‟m struck by how nonchalant she notes she is going to lose her hair. i guess there‟s a time when they go through realization which happens before we meet. i wonder what that moment of realization is like.) when i come back from search, i find her with another woman engrossed in a conversation about head coverings like they are the dearest of friends. (how odd. i think about how a waiting room is usually like most other public space in this city. people keep to themselves. here, people usually come with friends or family, leaving only the volunteers and nurses as the only outside people they connect with. i wonder what‟s caused these two women to connect. maybe it has to do with some part of their chemo/cancer experience like losing their hair. commonalities, perceived shared culture bring people together. i wonder how distant patients feel from the rest of us.) what strikes me about this scene is not just that this woman had connected with another patient in the waiting room but that she spoke so plainly about losing her hair. as studies have uncovered, hair loss for cancer patients is often intimately tied to one‟s body image and self- esteem (bello & mcintire, ). some patients experience it as a loss of their gender identity, a very distressing moment in their treatment. as this woman spoke of her impending hair loss with such normality, i try to imagine that significant moment in her life when she did have to confront her hair loss, cancer diagnosis or any other devastating change due to the illness. and then, it suddenly occurred to me. i was not there. i was not present in her moments of greatest despair. i am only part of her life for this one fractional moment. how could i ever expect to understand her experiences or to help her in her moments of despair? i try to imagine myself not as a volunteer, but as a paid hcp like a counsellor or nurse. the conclusion remains the same. my encounter with her, this service that i provide is such a small part of the overall support that she receives. the thought is humbling. as a practicing counsellor, it reframes my perception of the value of my service or of me in relation to my client. it challenges me to look outside of me as the sole source of support for the client. this thought is as humbling as it is liberating, for in looking beyond our dyadic relationship, i discover a whole host of resources and support systems and hcps. image . personal photo of public art entitled echoes at kitsilano beach in vancouver, bc. journal entry - - the simplicity of the art was what struck me initially, it‟s straightforwardness, it‟s upright arrangement, nothing more than a bunch of chairs. no angle, no variety, no people to occupy them. my imagination began to fill the chairs with people, interactions and conversations. i began to realize that each chair arrangement would reflects a very different way of relating to another. the side-by-side forward facing chairs suggest a very different relationship than the face-to-face chairs. the angled arrangement reminded me of an engaged but not confrontational relationship like in counselling, while the three chair arrangement feels very egalitarian and collaborative. it struck me how these interactions are reflective of the many different ways in which we may relate to each other. for me this art is about acknowledging and accepting such diversity. i think about how health care provision should be similarly perceived. we may position ourselves in relation to others we care about in a number of different ways. it is not to say that one is more valuable than another but that each serves a different function. . . summary. anyone can be a hcp. to me, the magnitude of this statement is not to be lost in the triviality of its kumbayah-like tone. this statement challenges my own notion of health care provision as an exclusive task or responsibility or skill of the salaried, job titled, licensed or trained. instead, it is done by all. this statement legitimizes the impact of those who are not recognized, their work in merely being present or offering support, not only those providing treatment or distributing medication or diagnoses. in fact, the majority of the healing seems to come outside the institutional walls of funded, educated, structured cancer care. i for one had this attitude of viewing care provision as an exclusive task but that merely undermines and denies the value and impact of care provided by so many hcps. it places a burden of responsibility on the professional or causes the professional to not look beyond his/her own surroundings for ways to relieve pain and suffering. a further consequence of this attitude was in denying my own contribution to relieving the suffering and isolation of cancer patients, as a researcher-listener to their story, as a volunteer supporter of their family members, as an advocate of their underrepresentation and being overlooked. no longer will i wait for the day that i have a salary position or job title that “graduates or permits” me to be a cancer care provider. whether we are the volunteers who help navigate a patient to their meeting during their first contact with the agency or the interpreter who bridges a language divide that robs individuals of their voices or the volunteer who provides information on driving services or the researcher who is unconditionally curious about the experiences of their participant or the oncologists who formulate treatment options, we are all hcps. everyone is a hcp. this statement is not merely about making everyone feel good. rather, it is about liberating, empowering and giving responsibility to the masses. despite our social inclination to legitimize the institutions, the funded, the professional, the titled, it is worthwhile to fight back and to acknowledge the value of the countless others. otherwise, it is doing a disservice to those we strive to care for. . conversations with nímāmā . . juxtaposition of our two realities. field notes - - i‟m sitting in the lounge. it feels more busy than usual. a family with two young children sit quietly in one area. the girl gets up, tries to do what she can to entertain herself in the small space. she charges for a few steps and tries to slide as far as she can across the floor. she tries again, trying to get farther. and again, and again. she delights in trying, not so much in succeeding. (i can‟t help but laugh watching. it lightens an otherwise sombre atmosphere. i find it to be a strange juxtaposition, that amidst people fighting and on the brink of death that there exists the sound of a young, innocent little girl, giggling with playfulness.) nímāmā, isn‟t it so very strange, so very incomprehensible how these two realities can co-exist. this weird or even twisted juxtaposition of health and sickness, of life and death, of innocence and a loss thereof confuses me. how is it fair? how is it fair that you must bear pain and suffering while i carry on in freedom and health? whereas you confront death, i will live on. in spite of circumstances that have brought us together in the final months of your life, life, you continued to care for those around you, while i remained ever self-focused and reflective of my own needs. how is this fair? in these moments of sober reflection, i recall the stories of the young adults with cancer that i have met, their recounts of life interrupted, of normalcy lost, of potential unrealized, of plans shelved, of life‟s natural order disrupted, of being left behind by the world. image . excerpts from diary of a young woman with cancer. a diagnosis of cancer can be life transforming. some also continue to persevere in the face of their illness, to refuse to succumb to “practice dying”, to retain some sense of normalcy as though “it‟s all good” (salsman, garcia, victorson, brockstein, & cella, ). field notes - - as i wait for the elevator door to close on the ground floor, a tall and slender young woman slips in. she‟s dressed in a t-shirt and running shorts with a hydration pack strapped around her waist. she is wearing a hat which covers from sun. (i wonder what department she works in. maybe one of those health-conscious, athletic nurses who doubles up exercise and getting to work. i then notice the scarcity of hair underneath her hat. she‟s a patient! oh… just coming in like any other person, doing whatever she needs to do now and then going on with rest of her day. it strikes me how cancer can be all encompassing, and yet for some, they persist in their day-to-day normal lives. i find that remarkable, admirable. i‟d like to think that that is what i would do if i ever had cancer. my god. that could very well be me, and yet, it‟s not me. i feel a sudden connection with this person. from one runner to another, i‟m saddened to think about the chronic injury that she has to run through. no amount of rest or remedies could ever remediate.) nímāmā, how is this fair? i have struggled with this question much since our weeks together. how cruel life can be to inflict such suffering upon you and upon others – others like me who have left their home countries and find themselves in a foreign context, or others like me at my transitional stage in life – like the young woman of these journal entries or the runner with cancer. and yet, not me. not me. nímāmā, as much as our paths intersected during our life journeys, we were travelling in two completely different directions. i do not live in physical and emotional pain, restricted to certain rooms or certain activities. i am allowed to go free. like a visitor to this eternal prison that you have to occupy, i moved on when my time was up. i returned to my humdrum life and studies, while you continued to fight, losing, weakening. . . failing you. i am not sure if you remember the day when we watched a movie or rather, you watched a movie. i will always remember it as the one moment that i failed you so utterly. it was the first day we left the hospital and moved into charlie‟s apartment. i remembered it was a warm and sunny day. it felt good to be leaving the coldness and sterility of the hospital, to be going home. i remember you took up the spare bedroom beside the kitchen. your bed and a big flat screen tv were unpacked from your move from michigan but the rest of your worldly belongings remained in boxes, stacked up in the living room wherever there was room. there was optimism in the air, or at least there was for me. your big sister, my dàmāmā was coming to support you in a few days. i felt relieved. you‟d finally have someone close to you, be with you in a way that i never could. we were strangers after all, connected only by blood and not by experiences or memories. i was your little eight year old nephew when we last met, when we first met really. maybe this is how you would always see me. i am not resentful of that because i understand how i may always be the little boy to you. our cultural location was just too separated. young versus older, generational gap, gender gap, cultural expectations of aunt and nephew roles. i am, however, frustrated that i could not have been a support to you as an equal. had i approached my responsibilities whole-heartedly and with the awareness that i have today, i would still have encountered a divide between us that i would not be able to bridge. i felt too different from you. i wonder if you felt that way about me. in spite of my own optimism and dàmāmā‟s arrival, i know that it was probably quite unsettling for you to move into the same household as charlie‟s partner, the one with whom you have developed such tensions and felt such vitriolic anger towards. i can only imagine how much it scared you to have her so close to you, how much it hurts to be reminded of her presence in your son‟s life. i imagine that that is why you resisted leaving the hospitals when the staff asked. they even urged you but you resisted. it strikes me now how unsafe that environment must have felt for you, whereas at the time, i felt an oblivious and blissful optimism. the twisted juxtaposition of your fear and my optimism. the cruelty of this divide between us. in spite of your lack of safety that day, you continued to project strength. you wore your mask of contentment so effectively that i forgot to take care of you. i forgot how much you needed an ally, a companion and a connection to the world. having been confined to a hospital ward and room for nearly two weeks, i had such pent-up and anxious energy: when i discovered the stationary bicycle out in the living room, i was determined to use it. at the same time, i felt uneasy for abandoning my mission to stay with you and keep you entertained. my solution was the large collection of dvds. i could set up a movie for you and then go work off some energy on the stationary bike. i suggested watching a dvd. you agreed, smiling. i read through the familiar hollywood titles. i had seen some of them but not others. i was even interested in watching a few of them, and yet i maintained my stubborn commitment to get on the stationary bike, to release my pent- up energy, to exercise. i had decided that i would not watch the movie with you. i presented a number of interesting titles that you might like. we deliberated on each one, reviewing plots, discussing our interest in movies, past movies that we‟d seen. we agreed on gone in sixty seconds, a car heist thriller with nicholas cage. light-hearted, action-packed. a good escapist movie for the circumstances. you seemed pleased with the selection. just set it up and back away slowly, make my unnoticed exodus. i remember that day, how you sat in your bed surrounded by a mound of blankets, the brilliant sunlight flooding through your windows. i thought that were comfortable and enjoying the movie. my conscience was eased as i sat out in the living room, expelling energy on the stationary bike. then a phone call from dàmāmā or another family member disrupted the movie. you talked on the phone, i came in to pause the movie, believing that you had wanted to but did not know how. the phone call ended, but you never restarted the movie. you could have. you could have restart the movie if you were really interested, but then you really were not interested in the movie were you? maybe you were never really interested. you were just pretending to entertain me entertaining you. who was helping who? i was not sure what to make of it. the more i thought about it, the more miserable i felt. i had come all this way to support you, to take care of you; and all this time, you were actually taking care of me. in your weakened state, you continued to take care of me and my feelings, watching a movie that you were not even interested in just so that i could allow myself to do what i wanted to do. my guilt magnified. i was so conflicted. i wanted to be angry with you for tricking me like this, for not letting me help you; at the same time, i wanted to have admiration for your altruism. how could i have maintained anger towards you when your intentions were so good? underneath this internal conflict, all i can think about is how i abandoned you in your moment of greatest need. when you felt most unsafe, i left you to attend to my own vanity. i regret leaving you for the stupid stationary bike. i feel guilty for being with you but resenting it, for not having committed myself wholeheartedly. i feel guilty for not being your companion, to help you maintain a connection to this world in your last moments of life. i feel guilty for surviving while you died. these days, my guilt sometimes moves me to tears. i even feel disgusted sometimes. i begin to loathe the person that i discover myself to be. as much as i want to think of myself as a good person, i am confronted by these instances of selfishness and am left wondering whether my self-conception is accurate or just a grand delusion. in providing care to another, will i choose to care wholeheartedly or just step back, distance myself and be driven by my own needs? i am afraid of what my answer might be, afraid that i may not be who i thought i was. nímāmā, i know that you would tell me to not be so tough on myself; that you valued my presence regardless of what i thought i did wrong; that you appreciated me coming all the way to baltimore; that without me there, you would have had no one but yourself and that would have been infinitely more difficult. i know that you would say that to comfort me. that is the selfless individual that you are, someone with an extreme loyalty to your family and instinct to protect. you would try to protect me from my feelings of self-loathing and disgust. . . protecting each other. i have been increasingly thinking about this idea of protecting others, about how we are all so predisposed to protecting those that we love from worries, disappo intment, sadness or pain. as you seem to have done for me, you protected me from your own fears of uncertainty. if you had known about my self-loathing, you would try to dispel that too. even though you were near a breaking point yourself, you took on my burdens along with your own. you wore your mask of contentment to convey a strong image, all the while hiding the tremendous pressures and fears you must have been experiencing. why did you have to be this way? this tendency to protect others has cropped up in a number of narratives. image . excerpt from diary of a young woman with cancer. for cancer patients and their loved ones alike, this may be experienced as a very confusing reversal of roles. “what am i supposed to do? how am i to act around this person?” this young woman‟s journal entry could have easily been your words, nímāmā. in seeing your family grieve for you and your suffering, your instinctual reaction was to comfort us, to stop the source of that discomfort. the source of our discomfort was in seeing you weak and distressed, and so for us, you protected us from yourself. you concealed that vulnerable part of you and put on your mask of strength. we also backed away from you to avoid further burdening you with our concerns and worries. we engaged in this dance of repulsion in spite of our best efforts to conceal our fears from each other and the so divide between us grew ever greater. to others, we remain ever together, and yet we cry in silence on the inside. i am reminded of a conversation i had with a young man about not crying after receiving news of his diagnosis. iya: yeah! i was sad… but not crying about it. i don‟t cry a lot. and actually, i have problems crying. i wish i could cry more because then i think that would alleviate me, make all these feelings going away. but i don‟t. david: you try to not allow yourself to feel sad. iya: yeah (tentative) i think, i don‟t want to because i know that if i feel sad, i know that [my partner] will cry more. he‟s always crying, so i try to protect him, not crying in front of him. but at the same time, we had a conversation a while ago that i want to cry more […] i told him, if i start crying, you don‟t need to come and help me. let it come out first, and then after, you can help me because if you make me stop, it will be worse. then i will stop, and then the tears won‟t come anymore. david: so you mean if he tried to help you or if he cried himself, then it would be even worse for you? iya: yeah, yeah. i think, i think so cause then i would stop. if i see him crying, i would stop crying and try to… make it easier for him. and if he comes and just tries to support me without crying, i think that would make me stop crying because he‟s trying to stop me, and the feelings won‟t come out all the way, would stop half way through. so i think it‟s better to let me cry and let all these feelings cause i won‟t cry forever. one day it‟ll stop right? maybe half an hour of crying will be enough for me and then it will stop and then, and then he will come and help me, and then it will be fine. i think that that way will work better for me. david: just to let you have your moment. iya: yeah (laugh nervously), but it hasn‟t happened yet. he goes on to identify the “weirdest” and rare moments when he does find himself being moved to tears. each of these moments, such as in watching a documentary about his career passion or hearing a support group member‟s story , were moments of sadness for others. it is as if grieving for others is safe while grieving for oneself is not. the latter can only cause hurt to self and others, whether that may be in reinforcing one‟s own discouraging circumstances or in making others worry about us. vicarious catharsis, for lack of a better term. the value of peer support groups was commented on by many in the young adult cancer community, from patients to health care providers. this seems to make sense i considering that young adulthood are transitioning from a life stage that places immense priority on social relationships and a sense of belonging. several young adults with cancer commented on how these forums allowed them to share openly with peers, a rarity given that they experience themselves as a significant minority in a cancer care system that is largely geared to serving an older demographic. two hcps observed the immense relief that young adults seem to experience in stepping out from behind the mask that they put on to exist in their day-to-day life. it can reduce pressures in their day-to-day social spheres. young adults find significant common ground in their shared experience of cancer despite differences in language, experience and cultural identifications. for immigrants in particular, support groups may serve as a community that they are lacking. i was struck by the clarity with which he sees his circumstances, the openness of his conversations with his partner about crying. in spite of these pieces being in place, his moment of alleviation remained ever elusive to him. there is sombreness and pessimism in the story going forward. “… but it hasn‟t happened yet.” will he find his moment of relief soon? will he find it ever? nímāmā, if he was unable to reach that point of emotional honesty and relief with the level of awareness and openness in his relationship, i am humbled to think about the insurmountable barrier that we faced. i was your eight year old nephew and you were my aunt, the second oldest of my dad‟s siblings. consistent with confucian traditions , we were cast into our social roles, you as the perpetual care giver and me as the child in need of protection. in the end, this divide between us comes about through our instinctual desire to protect our loved ones. i find myself falling into this trap. after my recent bicycle accident, where i crashed into the back of a truck at high speeds, lost consciousness and was carted to the hospital in an ambulance, i refrained from telling my parents until i was asymptomatic and fully recovered from the event. i did not tell them because i did not want to worry them. they are so far away that there was nothing that they could have done anyway. given that we only connect now via skype, i know that telling them what happened would have just filled their days with worries and a sense of helplessness. the analogy may be draw for many, especially for immigrants with cancer whose loved ones may be far away. our tendency to protect others resurfaces, in this case from their feelings of worry and helplessness. it was a simple decision for me at the time, the most course of action that would yield the greatest benefit and least cost. confucianism is considered to be a system of teachings that reinforces existing social hierarchies (dawson, ). its influences are noted in both ancient and modern day china. i shared all this with a colleague recently. he was surprised to realize how well i had keep this serious accident hidden from him. i had put him in a similar position as my parents, not letting him know until long after the incident had lost its potency to cause worries. he wondered out loud how i might react had i been in my parents‟ position, perhaps if my dad was in a serious accident and i was not made aware until long afterwards. i found myself stunned by the thought. i would surely want to know, even if it caused me great distress. i imagined the reactions i would have. i would probably be outraged and resentful in being left in the dark. why wouldn‟t they just tell me? underneath my anger would be a fear perhaps in being reminded about the mortality of someone i care deeply about. if they hid things from me, i would begin to feel uncertain about our relationship, about whether it was as honest and open as i thought. it would have chipped away at my security in the state of my relationship with my parents. i began to imagine a divide appearing in my relationship with them. i imagined myself becoming distant from them. all of this fell out of their well-intentioned desire to protect me. it was a simple conclusion and yet one that was hidden behind my good intentions, my hypocrisy. . . trying something different. as i had expected, when i eventually did tell my parents about my accident, my mom expressed some restrained frustration and ongoing worry about my well-being. i reassured them that everything was all right and we moved on. i was relieved that more was not made of the incident and that my decision to wait to tell them worked well. in hindsight, i wonder how much this delayed disclosure also caused them the anger, fears and insecurities that i had experienced in my imagined scenario. i am disappointed that even now, i may have caused them pain even in these moments. a few days later, something surprising happened. my parents called. they expressed a desire to purchase disability insurance for me. i felt uneasy. they provided arguments of its worth which i heard but had a hard time taking in. preparing for my own mortality was something that i had rarely if ever confronted. nobody wants to think about life and disability insurance. the thought of preparing for our own end seemed perversely self-condemning. these thoughts rattled in my mind as my parents continued their many rational arguments. “insurance is about buying peace of mind.” “you would have income to live on just in case anything was to happen to you.” “it doesn‟t cost that much.” then something different. “in case anything happens to us, we‟ll know that we‟ll always be taking care of you no matter what happens.” her words hit me like a tidal wave. “…we‟ll always be taking care of you.” i had no words. my body began to shiver. i fought back tears over skype‟s faceless interface. for a long moment, there was silence and yet, a whole lifetime of communication was taking place. something important occurred to me that day. had i chosen to never share my bike accident with my parents in order to protect them from their worries, my life would never have amounted to that day. that day, i was awakened to the depth of their care for me. i was reminded of how much their presence is important in my life. it brought our relationship closer together. i examine other relationships in my life, like the illusive and distant relationship i have with my dad. the way we have related to each other for much of our lives revolved around maintaining harmony and protecting each other's feelings. from this, we have remained emotionally distant. then there was our relationship, nímāmā, the way we kept away from each other. you were locked in your care giving role as my aunt, and i was ever fearful, handling you with care. whereas our instinct to protect others creates a great divide between us, our “gifts of pain” bring us closer together. . . protecting ourselves. what keeps us from realizing this gift? maybe we are protecting each other. maybe we also protecting ourselves. from what? from the care of others, from their rush to action. i am reminded that i often keep things from others because i do not want to be blamed, criticized or nagged. in the case of my bike accident, i had predicted that had i told my parents about the incident, i would have been verbally bombarded with a host of advice, suggestions and warnings. have you ever experienced this, nímāmā. knowing our family, you probably have. i imagined that you might be as averse to people‟s misplaced and inappropriate advice as i am. maybe not though. i acknowledge that as an immigrant young adult who has come to greatly value my self-sufficiency, i react quite strongly to my parents‟ even well-meaning support. i perceive it as an attack on my very identity as a young adult. i resent them for holding me back from becoming successful in life. my frustration and resentment becomes directed at them. indeed, resentment and anger towards my parents were themes that dominated much of my late adolescence and early adulthood. their advice often came across as imposing and restrictive, rather than supportive to my growth. what is more, i dismiss their advice because it does not fit my circumstances. i think in my mind, yes, that would work for you but i wonder how pervasively this is also experienced by young adults with cancer whose illness forces them to receive support and care from their family. i would imagine that it is a conflicting experience to accept support that they very much need and yet feel as though they are giving up their identity as a strong and self-determined young adult. maybe some will also, like me, develop resentment towards their well-meaning loved ones who seem to be the source of their regression in life development. not for me. given their strong identification with their parental roles and resulting fears and yearning to help, they would quickly jump to problem solving mode. i would in turn be left feeling let down by them, wondering if they had even heard how much the experience had affected me. this is often all that i truly want from them, to be heard. is that not what everyone wants? i am quite capable of reflecting on the past and taking prudent actions for the future. all i want is to share with them my life, be heard and understood. given my past disappointments in sharing my experiences and not feeling heard, i became cautious and even avoided sharing as i did about my bike accident. it is a simple process of behavioural conditioning (skinner, ). behaviours that are followed by adverse consequences are extinguished over time. subtly, the divide between us widens. recognizing the value of sharing in bridging interpersonal divides and forming strong relationships, how then could i have done things differently for you, nímāmā? for my future, how can i as an emerging hcp encourage sharing and connecting amongst those i care for? what i want for myself, i will try to provide others. a willingness to listen, without judgement, without conditions, without a compulsion to respond. . . someone who is simply present. in my role as a volunteer, i have learned much about how to be comfortable just being present. the disposition to simply be present with patients and family members seems to be embedded into the cultural norm of the volunteer role. the commitment to simply be present remained a challenging one despite my four years of clinical training in counselling psychology. i was quite surprised by this given my discipline‟s commitment to the theoretical orientation of humanistic psychologist, carl rogers, whose principles of genuineness, empathy and unconditional positive regard in essence describes the commitment to be present and bear witness ( ). perhaps this speaks to journal entry - - as part of my cancer agency training to be an inpatient volunteer, i have been attending an extensive four day workshop offered by vancouver hospice society. one of today‟s topics was on being present with someone. one handout read, “in this work, it simply comes down sooner or later to how comfortable we are with ourselves, with others, and with the whole idea of dying, because often working with the dying involves more „being‟ than doing.” acknowledging that those we care for may not always be able to respond, the facilitator guided us through an exercise in approaching and being with someone who is asleep. go in, speak to the person as though they can listen, announce that i‟d like to sit with them for a while and then just sit there, being fully present, feeling their existence. at the end of five minutes, we‟d get up softly announce our exit and leave. the experience felt awkward, almost embarrassingly mystical. there was even some discussion afterwards about spirit, energy and connection. i am usually quite open-minded about these things but the idea of sitting with someone who may not even be aware that i am there sounds somewhat futile. image . from “volunteer handbook: a guide for volunteers," by volunteer services, , p. . copyright by volunteer services. reprinted with permission. the cultural norms of the counselling profession where an aim for growth and healing creates pressures for observable change within the boundaries of the therapeutic encounter. being a volunteer has taught me how to simply be present with someone that i was unable to experience in my professional training. at first, i found these norms overly restrictive and disempowering. i believed that volunteers were capable of doing so much more than this. it seemed as if we were just divesting responsibility and liability in a way that lacked compassion for those we cared for. what i am able to better appreciate now is how the most compassionate act may be in just being present. field notes - - i head for the room belonging to the chinese patient that the nurse suggested. it is a single room. the room is dark with the window blinds closed. the privacy curtain is drawn around the bed so that those in the hallways cannot see directly into the bed. i have to fully enter into the room before i am able to see him. he is hidden behind the curtain. he is sleeping, his blankets tightly bound around him. it is as though he is in a cocoon, enveloped, protected, body undergoing some process of metamorphosis though unlike for the emergent butterfly, this being is undergoing a process of degeneration. we are trying to slow it but can‟t. i notice his position, turned away from the hospital and towards the window as though he is saying, “i don‟t want visitors.” i look around and see no sign of visitors. i feel saddened. still asleep. i leave, disappointed and burdened that i was not able to bring company to his isolation, comfort to his life this day. […] i go back a second time, committed to connecting with him. he still looks asleep, but i‟m persistent this time. i make some noise with my shoes. it works. his eyes open. he notices me. i smile hoping i didn‟t freak him out. i offer my invitation. he makes no response but looks at me curiously. ah, there may be a language barrier between us. i rephrase my invitation, then a second time. i am persistent, maintaining a smiling, gentle expression. i want to convey compassion, care, hoping that he will accept my offer. he nods his head. i‟m unsure whether it is in consent or in affirmation, the way someone does naturally as a gesture of politeness. i check again to making sure, worried that i may impose myself at his discomfort. “can i sit in this chair with you?” he nods his head. i hesitate, still unsure, but i sit down. i take a deep breath, a breath of accomplishment, a breath of relief in having reached a new stage. i sit with my back to the window, looking back into the room, towards the bed, perpendicular to it. i do not stare at him, just at the bed, the covers. i feel no compulsion to immediately start talking. his expression doesn‟t seem to give an invitation to want to talk. he can initiate if or when he feels comfortable. i will just be with him today. i take a moment to reflect on my surrounding, regulating my breathing to adjust to this new position. i peer out of the corner of my eyes at him, his eyes are open, staring off into space. we sit there in silence. i hear the sounds of nurses engaged in discussions out in the hallways, the movement of the caretaking staff preparing the bedroom next door for a new patient. beyond that there is silence. i wait. i somehow feel patient, at piece today. i feel no compulsion to leave at the earliest opportunity. (this is a strange experience. why is this so? no need to leave till much later on so i have time for once. it feels good to have time, for the patient and for myself. i also feel especially committed given the life history that i‟ve projected onto this individual, the background that i imagine we share.) “you speak chinese?” he asks suddenly and in tentative, court english. “i do,” i answer, eager for contact and for this commonality. i switch over to mandarin repeating that i can. (the broken mandarin that i have been left with after years of growing up in an english context. i lament my fading language skills, what could have been. these encounters remind me about what i have lost. i am filled with sadness in having lost such a big piece of my childhood.) he doesn‟t respond immediately. he asks me in english if i speak cantonese. “i don‟t,” in mandarin. (i‟m disappointed by the missed opportunity to connect on this front.) “do you understand mandarin?” i ask in mandarin. yes, he responds in tentative mandarin. from this, i sense that this is as far as he may comfortably proceed in mandarin. in english, he asks me what i do. i tell him that i am a student at ubc. he nods his head in understanding, but more so in approval or admiration, the way our overlapping value systems put education in high regard. “ah, so you must be very smart.” i immediately and politely laugh it off. i tell him that i am from the east coast. our conversation turns to weather, coldness, how nice it is in vancouver. he coughs suddenly, not heavily but enough to cause his body to convulse. i remark his cough and that it must bother him a little. “no,” but rather than continuing on, he pauses for a moment (seemingly thinking about his coughing or sore throat) and an expression of annoyance or disgust emerges on his face. he corrects me. “not a little, a lot cough.” i check whether he needs water. he doesn‟t. he is okay. i resume my position in the chair. he asks more questions. i openly answer, careful to my use of words. after a few exchanges, the conversation reaches a natural lull. i have answered his questions. he has no more for me. there is silence. (i feel at peace with the silence. my mind is not racing to fill it with my own questions. i am aware of my reluctance to burden him, to barrage him with questions as though i‟m an interviewer or interrogator. i recognize that because of his challenge with english, my questions would cause more discomfort than anything. i am therefore comfortable with the natural lull that we have arrived at. my goal is not to make conversation but to communicate an unconditional acceptance of him and willingness to be here. i believe that he understands. i don‟t know why i believe so.) and so we sit, i comfortably. (i am not sure whether he shares my comfort with the silence, whether he is relieved to not have the burden of language to deal with another‟s presence. i sense that this is the case, that he too is comfortable with the silence as he does not hastily try to fill the silence with more questions.) i stare across the bed to the wall at the other side. occasionally, i sneak a peek at him. his eyes just stare off towards the ceiling, towards something. (i wonder what it is that his mind‟s eye is staring at.) he seems calm, not anxious. his mind does not appear to be racing in thought. in the silence, i hear laughter. two staff are joking about an upcoming event. the levity of that mood is juxtaposed against the peace. yes, it is peace that exists here. i feel irritated, that our peace is being disturbed, violated, infringed upon by their levity. i stare out the corner of my eyes. his eyes are still open, still starring upward, towards something. (i wish i knew what.) i check periodically. at one point his eyes close. he is asleep, not just resting his eyelids. i remain in my seat, feeling no compulsion to use this as an excuse to leave. i feel no compulsion to leave. rather, i feel that it is just right, right for me, to remain present while this person sleeps. this is my task for today, i acknowledge to myself. this is my contribution to this man‟s life. in this moment, i feel proud to have this task. i feel uniquely suited to do so. i feel the ambiance of the room. i sense a connection with him, perhaps not in spite of the silence but due to the silence. after some minutes, my attention begins to focus outward. i go from being the participant to the observer. i note the colour of the walls, the scribbles on the board, the nurse‟s name, emergency contact number, his shoes neatly placed on the floor against the wall so that it does not get in people‟s way. i become aware of how bare the room looks. (no one seems to live here or call it home. i wonder if he feels at home here or if this is a foreign environment to him. it strikes me how there exists a tension living in this space for the patient. should i set roots down in this space, try to feel comfortable, at home, in spite of the circumstances. feeling at home in this space almost seems self-condemning. the alternative would be to remain detached from the space, to allow it to maintain its bareness, its lack of a personal quality. both alternative are undesirable. how uncomfortable of an existence this must be.) my mind returns to him. i wonder if he perceives himself merely as a visitor here, a sojourner. i return to my completely present state, starring at the wall across the bed. minutes pass. my eyelids become heavy. i fight to keep them open. frantically, i refuse to give into my tiredness, to make it possible for him to open his eyes and find mine closed, uncaringly closed. i do not want him to feel uncared for. i want to demonstrate my full attention, my unconditional acceptance of him. i do not want him to believe that i am bored or want to be somewhere else. my eyelids become increasingly heavy. i notice myself drifting in and out of consciousness. […] i awaken, startled to the sound of a nurse in the room. luckily, i regain my senses before he does. […] the nurse leaves. the silence returns. i sit, not wanting to initiate the discussion, not wanting to burden him with my questions, my demand for language. i am now becoming aware of the passing of time. i glance at the clock every minute or two, realizing that now i need to go. i have a research interview. i try to sit patiently, but now i am no longer able to. i contemplate in my mind how i can leave without disrespecting this individual. i consider just leaving. no. i decide to make some noise again to get his attention and tell him that i am going to go and come back. “go,” he says quickly. (i wonder if i have offended him, that i gave him the impression that i was plotting to abandon him all along. but i don‟t, i want to reassure him, yet i say nothing. i wonder if he has understood anything of what i have thought. perhaps not. i leave, feeling uneasy, uncertain.) in this encounter, i was deeply committed to just being present with him. as i reaffirmed to myself on several occasions, i simply wanted to communicate my unconditional acceptance of him and willingness to be there. in a somewhat ironic way, the language barrier between us seemed to free me from the obligation to fill in the silences with idle conversation. on several occasions, however, i fought back the urge to pull out a notebook to capture my experiences in the moment. in the end, i became distracted by my limited time and other obligations. even with the freedoms from responsibility afforded me as a volunteer, my other roles as a researcher and as a student permeated into this peaceful space and challenged my ability to just be present. this is a sobering thought. i wonder how many other hcps hurry about with their tasks, not attending to their patients‟ fundamental need for human presence, to be heard and understood? perhaps, like me, they have a commitment to this and yet the expectations imposed upon them by their job, their system, their institution derail even the most fervent commitment to just be available for someone. then again, i imagine that others may simply not share my acknowledgement of the immense value of bearing witness to someone‟s joys and sufferings. it is perhaps easier to make such a claim when amongst a group of counsellors, whose forefathers of freud and rogers modeled a comfort in just being present. amongst other professions, where success is framed in terms of reduced physical discomfort, hospital utilization, and survival and mortality rates, such an acceptance of a patient‟s anger or misery would seem quite absurd or superfluous. whatever our professional aims may be, being present for another is a gift that is often undervalued. both volunteers and peer support group members seem to be valued within cancer care for their very unique role in simply being with someone. as noted by the volunteer coordinator, patients and family members express appreciation for having a volunteer just be present for them, to hear and understand their experiences. often, volunteers provide this form of comfort in moments or places where no one else could or would, such as in a lounge or while waiting for an appointment with a medical staff. likewise, young adult cancer patients have identified groups as being a valuable part of their support network. as many group practitioners have pointed out (westwood & wilensky, ; yalom, ), one of the primary therapeutic functions of groups for group members is often in being witnessed in ones journey of struggle and growth. through group norms of non-judgmental listening and a disposition to shy away from giving suggestions, group members are able to simply witness, hear and understand. . . courage and strength. as i think about the value of just being, it occurs to me that it takes tremendous courage and strength for care providers to adopt such a position. in relationships that i value, such as with my parents, i have a hard time resisting my temptation to solve problem. admittedly, i often find myself providing unsolicited and inappropriate solutions rather than simply listening and understanding. i feel compelled to respond in some way because i care, and yet all the while, i disempower them. i dismiss their capacity to come up with their own solution that fits for them. like handling someone with care, i care so much that i rob them of their ability to handle it. therefore, it seems to me that it takes tremendous strength to bear someone‟s pain without moving to rescue them or relieve them of their suffering. often, such inaction goes against my deepest instincts to love and care, and yet it may be the most compassionate act of all. my parents had struggled to find the strength to just accept my bike accident. it was only when they stopped imposing solutions and spoke to their own experiences and fears that i felt a connection with them that brought our relationship closer together. this, in turn, gave me a sense of reassurance that i could share with them in the future. as such, being present seems to create an environment where interpersonal divides are bridged rather than widened, and relationships are strengthened. nímāmā, as much as i can convince myself through these arguments, how could i ever feel at peace having simply been present with you. i am still haunted by the sound of your crying in the middle of the night. you were alone in your bedroom while i remained awake outside, in the living room. yes, i witnessed your pain in those moments, but not out of courage. i did so because i did not know what else to do. i was not sure what else to do. i had left you in your room to watch the movie all alone because i did not know how to be in sitting with you. the nervous energy that i was so eager to expel was perhaps from being witness to your pain and yet feeling paralyzed, not knowing what to do to ease your suffering. during those days in the hospital, i just wanted to look away and leave that hospital setting. i wanted to leave that world where cancer, pain and suffering existed. i was scared and did not knowing what to say. i was afraid to get close, to touch, to drop, to break you so i put on my mask. i was not strong enough and unable to bear witness to your pain. i ran away from you in the same way i ran away from one individual at the cancer agency. field notes - - noises, cries, painful grunting from within. i notice the sign on the door. “restricted access.” (it creates the impression of a movie scene. some untold danger beyond. i cautiously peer in. a single bed deep inside the room. it seems so far from the doorway. a man occupies it, turned away from me, face not visible. his body is hunched, lurching, contorting, clearly in pain. in solitary, last room at the end of a hallway, far away from the nurse station, other patients and any compassionate ears, i find it difficult, heart-wrenching standing here in my serene comfort, witnessing his pain and suffering. it‟s like watching a war prisoner being gruesomely tortured to tell some secret. i‟m filled with despair and pity for him. part of me wants so much for him to tell his secret, to give up to the torturers, but he refuses to. as if he is able to. if only he was able to. help! help! i want to cry. i look back down the hallway. the world is still the same. no alarms, no screams. no one is rushing towards us. the normalcy makes me accept this torture, accept that people are suppose to suffer. i move on, refusing (by doing nothing, have i become an accomplice in this man‟s torture and perhaps death.) to be a spectator in this man‟s torture. i have been haunted by the image of this man‟s screams and contorting body. “be a spectator in this man‟s torture.” a striking choice of words. why torturer? why implicate myself in his suffering? now, i recognize that that person in the room was you and i did see myself as your torturer. i was too cowardly and weak to just stand there, to bear witness to your pain, and so i ran away. i abandoned you and so i hold myself culpable. even now. i regret that i did not stay. i regret that i did not share my fears with you. i regret that i did not tell you that i was there, that i had witnessed your pain and suffering. . . your gift of pain. journal entry - - nímāmā, today i thought i heard your voice. i thought i heard you speaking to me. i was working on this thesis. music was playing in the background. the familiar and lulling melody of michael jackson‟s you are not alone came on. as the song progressed to the chorus, i was startled by the sound of your voice. you were speaking to me. chorus from michael jackson‟s you are not alone ♪♪ that you are not alone i am here with you though you're far away i am here to stay but you are not alone i am here with you though we're far apart you're always in my heart this song has always had special meaning for me. it is a dialogue between two voices: one represented by the verses, sad and lamenting; the other represented by the chorus, reassuring and comforting. i always thought of myself as the comforter, the care provider who reassures that you, nímāmā, are not alone. today, as i listened to this song, i heard your voice in this chorus, not mine. you were the reassure, the comforter. i was the lonely one. and with that shift in frame, the song felt so very right. as i reflected on the words with newfound clarity, i noticed a void within me that i‟d never noticed before. “♪♪you never said goodbye, someone tell me why.” i was overcome with sadness. my body convulsed like some coldness had filled the room. but it wasn‟t coldness. it was warmth. “♪♪though we‟re far apart, you‟re always in my heart.” i felt your presence and your voice comforting and reassuring. you were telling me to forgive myself. you were asking me to let go of the critical voice that resides in me. so i cried for you today, nímāmā. i cried in sadness for your pain, the worries that filled your sleepless nights, your isolation from those around you; your life unlived, your potential http://www.youtube.com/watch?v=d jsiy-vo g unrealized. but then, i also cried for myself today. crying for the regret i feel about all that i did, all that i was too scared to do and the guilt that i have carried for so long. today, i have come to a sense of acceptance of my role in your life. i acknowledge the value that i may have had in just sitting with you during those weeks together. for a long time, i regretted not having done anything for you. then again, maybe that was the most compassionate act of all, to simply be present for you, to hear and understand you. i want you to know that i did, that while i had left you in your room to watch the movie, my thoughts were still with you. even though i was too weak to handle my own fears and to remain close to you, i tried the best i could. i wish i had told you this, but maybe you already know. i hope you knew. as much as i was frustrated by the divide that was between us, i‟m trying to accept that these were the circumstances that were laid out for us, the cultural locations that we occupied. we began as strangers to each other, connected by blood only. i was your nephew, you my aunt. i wanted to be your protector, your care provider and when i felt myself being unable to do that i became frustrated and blamed myself for my failure. “♪♪your burdens i will bear, but first i need your hand.” i was resistant and resentful of your protection. it made me guilty to think that on top of the burdens that you bore, you also had to bear mine. but then, that was my mistake because you were also my protector, my care provider. you modeled someone who is ethnically chinese, and yet much more. you gave me permission to feel comfortable and not ashamed with my own chinese-ness. you have given me a gift, the gift of pain. i have come to understand how the sharing of pain although scary can bridge interpersonal divides and bring people closer together. over this journey of being a researcher and care provider, i feel much more connected to you as a result of the pain that we have shared. so i guess i cried for the both of us today, but rather than a cry of sadness or pain, maybe it was more so in remembrance of the past and in marking a new beginning. i was drawn to this idea that pain can be a gift. it was the theme of a documentary i came across entitled the gifts of grief (sobonya, ). poem (rumi, ) i saw grief drinking a cup of sorrow and called out, "it tastes sweet, does it not?" "you've caught me," grief answered, "and you've ruined my business. how can i sell sorrow, when you know it's a blessing?" chapter : conclusion through the ebb and flow of this research journey, the question that emerged as being most relevant to me was “how do i understand my role as an emerging hcp for immigrants and young adults with cancer?” my journey has brought me to speaking with individuals living with cancer and their care providers, to examining my cultural location and that of the other, to reviewing the scholarly literature and other textual materials related to cancer care, to being immersed in the cultural context of the cancer agency, and to reflecting on my own experience as a care provider for my aunt nímāmā. at this point in the thesis, i feel greatly tempted (or perhaps obligated) to draw broad conclusions, or make bold claims and premature recommendations about the implication of this research. admittedly, in this institutional context, doing so may somehow legitimize this research inquiry. i am, however, rather reluctant to prescribe or impose any of my own insights gained over the course of this research journey upon you, the reader. it might be inappropriate or even arrogant to suggest that my insights ought to become your lessons; that somehow, i am a voice of authority on being a health care provider (hcp). i hope that i have been able to create a seat for you on this journey and did not leave you behind. i hope that these stories have engaged you to reflect on your own role or circumstances as a hcp. as such, i am reluctant to determine the “implications of this research” (i.e., what i have discovered through my own self-reflections) for you. if there are implications at all, i hope that you have come upon them through your own reflections. recognizing my obligations in having membership to and participating in this institutional culture, however, i will attempt to summarize my own insights from this four year research journey and their implications on my own research directions, clinical practice and future. . implications for my research directions the qualitative ethnographic approach i employed in this inquiry my self-analysis and clinical experience. as an immigrant of chinese ethnicity who grew up in a predominantly caucasian society, i have never perceived myself to be a typical person of culture x or y. as considered in my understanding of the term culture , my cultural identity remains fluid. this has informed my view that that we are all multicultural beings and as such we do not fit neatly into the ethnic or racial framework used within and implied by the research community. questions such as “what are the attitudes and beliefs toward mammography among african american women?” (champion et al., ) or “what are the breast cancer experience of asian american women?” (ashing et al., ) presume a certain homogeneity in the cultural constructs being investigated. given that constructs such as african american or asian are often anything but homogeneous if not semantically ambiguous, such inquiries and their associated findings seem problematic. the aim of such research seems often to be reductionistic in drawing some simplified conclusions about a vast and diverse population. out of these realizations, what struck me as infinitely more informative to my own clinical practice are inquiries that seeks to understand how individuals experience their lives at the intersection of their cultural identities. in other words, what part of a person‟s identity is affecting his/her experiences? many scholars argue that this “intersectionality” research is what will ultimately inform and advancing our clinical practice (cole, ). moreover, brown ( ) for a more extensive discussion about my understanding of the term culture, refer to chapter . . likens such research efforts to the continuous n= research and data collection that clinicians engage in on a daily basis. through this current study on the intersectionality of my own cultural identities, i have come to recognize the immense value of such inquiries aimed at revealing complexities rather than simplification and heuristics. research that aims to simply and formulate heuristics is not as valuable to me given the nuanced richness of our human experiences and the stereotyping that such research has encouraged in me. at the same time, i find the confusion and sense of not knowing that i have experienced in this inquiry helps me remain grounded to a position of humility, curiosity and interest. in my clinical practice, it is when i lose this attitude that my work becomes less effective. likewise, as someone who provided support to patients and their loved ones, i was able to establish a compassionate connection when i remain humble. over the course of this research, i have also come to appreciate ruth behar‟s argument that “research that doesn‟t break your heart isn‟t worth doing” ( ). on first pass, behar‟s argument seemed intentionally exaggerated. then again, when i think about the studies that have left the greatest impression on me, they are ones that are able to communicate their findings in a way that reveals the raw and emotional experiences of individuals. i find these accounts to reveal more about the truth of individual human experiences than the horde of aggregative and comparative findings that dominate the literature. moreover, i have become aware of how stable for me, examples of such works include gray‟s ( ) handle with care?, a theatrical production that portrays the experience of metastatic breast cancer patients; and bryant‟s ( ) wrong way to hope, a documentary about young adults who live on in spite of their cancer. my worldviews can sometimes in the face of new and conflicting information. in consuming research, i tend to overlook or rationalize away findings that are not consistent with my existing understanding. as a result, i simply dismiss or forget about many well-designed and carried out inquiries. my initial uneasiness and dismissal of the autoethnographic research approach was surprising and revealing of my cultural location and the beliefs that i hold about what constitutes research. in a brief moment of forgetting these lessons, i became awakened to the power of the self-narrative inquiry to uncover and communicate truth about human experience. i felt as though i was being invited along on their journey of self-discovery, rather than taught or sold to. when autoethnographers spoke from their own experiences in a way that profoundly evoked or revealed their emotional experience, i in turn felt intimately moved. given the transparency with which authors made clear their own position, i found myself participating in a discussion with them about how my own narrative was similar or dissimilar. as a result of the author‟s self- exploration, i was able to learn about my own. given my own experiences with the evocative self-narratives of ellis (ellis, ) and hayano ( ), i became inspired to adopt this exciting but foreign and intimidating approach. what made autoethnography a particularly valuable analytic framework was its fitness with the personal question that emerged as being most important and relevant to me. moreover, the emphasis on reflexivity parallels counselling psychology‟s tradition of increasing self-awareness. this reflects a widespread phenomenon known as a confirmation bias. it is the natural tendency for people to favour information that confirms their existing worldview, while dismissing that which is inconsistent (abreu, ). in essence, our attentiveness to new information or recall of existing information is selective and biased. as i was preparing myself to work in the field of cancer care, the opportunity to examine my own position and biases has prepared me to be more comfortable in my role as a provider of cancer care. all of these factors have given me a newfound appreciation for this method of inquiry. in considering the question of how (or the process by which) i have come to understand my role as a hcp, i have recognized the significant role of the individual narratives in informing me. as i find myself less and less informed by the aggregative findings of traditional research, i found the narratives that came from my conversations with participants or through reading autoethnographic writings, to be much more compelling. rather than categorize and simplify as in the case of most research i read, people‟s narratives made things more muddy and confusing, a position that helps me maintain my humility and curiosity. as i go forward, i feel much more at ease with seeking out narrative and autoethnographic works as a source of knowledge about human beings. . implications for my practice in chapter . , i asked the question, “who is a hcp?” in reflecting on the many forms and sources of helping that i observed and personally experienced along my journey, i realized that providing health care is not some task or responsibility that is exclusive to those who possess official job titles, or expensive education and training. i found myself empowered by this realization as a volunteer who, together with a laboratory staff, was able to quickly step in to engage with and support a cantonese speaking woman under significant distress. anyone can be a hcp. in this way, i faced the sobering and yet comforting realization that much of our suffering, healing and support takes place outside the institutional walls of funded, licensed, structured cancer care. people‟s engagement with the cancer care system is infinitesimally brief. some may even try their best to minimize their interaction with the system. it was sobering to realize that a patient who seemed so pleasantly cheerful and warm when i met her had one day been confronted with some earth-shaking experience like losing her hair, her sense of womanhood or self, or her family. the encounter made me wonder where i was when these experiences took place. where will i be in my role as the trained, paid, well-intentioned hcp in her life when she next experiences moments of intense pain and suffering? the fact that i will never know and will likely not be there in her “moments of greatest need” was quite humbling. it is a romantic notion, this idea of being the knight in shining armour that my client or patient is waiting for, that nímāmā needed. of course, like most romances, it collapses under the weight of its own expectations. i realize that having this view does a disservice to those who i am trying to support. it is an egocentric, self-aggrandizing position, to put myself in the centre of the individual‟s universe as though i as the counsellor or volunteer am the only show in town. as i have experienced with nímāmā and with clients in my clinical practice, it also places immense pressure on those brief moments that we share. therefore, recognizing that you have a life and support system beyond my dyadic relationship with you is relieving and empowering of you. i shift from a role of providing to one of facilitating and bridging. anyone can be a hcp. my time with nímāmā and as a volunteer helped me appreciate that often times, the greatest gift i can provide another is my presence, and my willingness to hear and understand. as much as i expect to provide some observable relief or concrete solution, my simple company may be what invites people out from behind their masks and closes the interpersonal divides that the experience of cancer so often creates. and yet, the greatest gift i could have provided her was my presence, my courage to stay. i do not think that she wanted or needed me to take her physical pain away or to resolve the interpersonal conflicts that had existed in her life. from me, she simply wanted someone that could accept her unconditionally and not have advice or expectations for her. someone that could sit with her and watch a lousy escapist movie with her. someone that could play cards with her. someone that could share with her stories, learning and hopes for the future. someone that could help her stay grounded in this world at a time when she was losing grip. at the very least, i provided these gifts to her. and although anyone can fulfill this role for someone, i have realized that it takes tremendous courage and strength to be able to bear witness to their pain. so often our natural response may be to be moved to action, advice or solution, and despite my good-intentions and care, my help becomes often misplaced and unwanted. “anyone can be a hcp” also means that those who are cared for, may also provide care themselves. i did not realize this in the time that i shared with nímāmā. instead, i desperately tried to impose myself as the hcp, which condemned her to a position of illness, weakness and need. it denied her the opportunity to express her strength, hers self-sufficiency, her deep devotion to her family, qualities that remained with her even while she had to bear a disease that was shutting down her body. i did not need to be her care provider, but she was mine. she provided the gift of pain, the lesson that through sharing her suffering then and through crying for her now, we become closer. we were no more than strangers before, connected only by heredity. now, my pain, my grief and even my guilt is what connects me, and all my future work and aspirations in this profession to her. . implications for social policy such considerations prompt the question, “what holds currency?”, and in follow-up, “who determines what holds currency?” to the first, i was reminded of a recent and thematically familiar news report. a local weekly, drop-in recreation group therapy program for seniors was closing due to provincial funding cutbacks. several group members expressed sorrow and anger as the program was “a lifeline” that gave them “motivation to get up”. i was disappointed in hearing about this news, not only for its implications on the well-being of group members but also for what it suggests about those engaged in policy making. is it a reflection of their attitude about what sort of care holds currency and thus is deserving of funding? for those who see no motivation to get up or looking forward to the next day beyond the sense of community and contact which they may experience, is the mere being present not the most invaluable care that we could provide them? what discourages me more than the views of certain policy makers is to think that similar attitudes may be pervasive within society at large. indeed, i recognize even my own tendency to give value to that which is observable and immediate, and to those who are trained, positioned or salaried. how many others also dismiss the tremendous value of the volunteers, family members and random strangers who offer their skills and contributions in moments of need? i struggle with these seemingly conflicting aims, to either be present for someone or to provide solutions, interventions and treatments for them. we will always have broken bones that require casts, infections that can be treated with medication and tumours that warrant surgical removal. in these cases, distress on the body affects the mind as much as much as the inverse is the case. and yet, does our society‟s dominant focus on our bodily distresses come at the cost of our capacity to exist in our body. my greatest worry is that it may. recently, i was surprised to find myself deeply engaged in a conversation with a colleague about this research. i was very heartened to discover that many of my realizations held resonance for her. more significantly however, i was amazed and impressed with how cogently i was able to communicate my ideas to her. it is especially remarkable given that i have never been good at presenting messages impromptu and always need time to assemble my thoughts and rehearse. where has this ability come from? as i reflected on this question, i began to identify the many conversations i have had about this research over the course of this four year journey. i have engaged with scholarship adjudication committees, colleagues, professors, research ethics boards, conference attendees, community and family members, and even perfect strangers. each of these experiences has helped in honing my ability to communicate complex ideas to a broad audience and in a variety of contexts. having arrived at this point, i cannot help but feel a certain pride and excitement at my growth as a hcp, researcher and communicator. while i have always had an interest in working at a social justice and policy level, i had never thought of myself as someone with the skills to do so. my recent conversation with a colleague challenged me to believe that i can. from here, i could arrange to conduct more formal presentations or write manuscripts. irrespective of the direction that i take with this inquiry though, i have a sense that i will be able to do so and that is a very gratifying feeling. . finally if this inquiry has taught me anything at all, it would be that in order to care for others, i must first start by caring for myself. it is like the familiar analogy of being in an airplane cabin that has depressurized. if the oxygen masks appear, we are instructed to always secure our own masks before assisting others; otherwise, we will lose consciousness before we may be of any support to our loved ones. no one wins. my culturally ingrained value to uncover new knowledge creates a certain disposition for me to look outside of me for data. through this autoethnographic inquiry that endeavoured in the beginning to better understand how to more effectively support immigrants and young adults with cancer, i realized that my major barrier was to study myself. there are no hidden tricks, no expert skills in being a hcp. at its most foundational level, being a hcp for me involves simply being present for another, being there to bear witness 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( ). assessing the health care needs of adolescent and young adult cancer patients and survivors. cancer, ( ), - . appendices appendix a initial research proposal understanding the psychosocial experiences of cancer patients of chinese ethnicity (cpce) in the british columbian cancer care system context. in canada, it is estimated that nearly , new cases of cancer will be diagnosed this year (marrett et al., ). of these, approximately % will be from an ethnic minority. unfortunately, there is growing evidence to suggest that individuals from ethnic minorities are receiving lower quality health care in canada than the general population, leading to poorer health outcomes (lin et al., ). this is especially the case for cancer patients of chinese ethnicity (cpce, defined here as either chinese-born or of chinese descent), whose cultural differences (e.g., in language, beliefs and attitudes) produce challenges for health service providers. because of language difficulties, chinese patients are often reluctant to seek medical attention, sometimes ignoring symptoms until they become severe (gany, et al., ). research also shows that cpce are less aware of services such as home-based palliative care or hospices and, as a result, access them less frequently than caucasians (feser & bon bernard, ). patient compliance is also a problem and when physicians are not understood, chinese patients are reluctant to seek clarification (green et al., ). as a group, they are also more likely to rely on complementary or alternative medicines (xu et al., ), which may reduce their compliance with conventional treatment programs. some cpce are reluctant to discuss their illness for fear of burdening their loved ones (tong, ). this, as well as the belief that cancer is contagious may lead certain chinese cancer patients to feelings of social isolation (gany et al., ). where culture is a focal determinant in our perception of illness and suffering, increased cross-cultural understanding becomes a necessary component of providing the best quality health care possible (kagawa-singer & blackhall, ). unfortunately, there is little guidance for service providers working with cpce within the literature, especially in the context of the canadian health care system. past studies have examined the views of both cancer care professionals working in asian communities and cancer survivors; however, very little is known about the quality of care received from the perspective of the minority patient. further research directly examining the experiences of cpce is needed to help guide service providers in delivering culturally competent care. research framework. the broader research program will aim to develop a theory to explain the overall experience of cpce in the british columbian cancer care system over the course of their illness. the proposed study will more specifically focus on the psychosocial dimension of the patient‟s experience. i will employ a qualitative approach based on glaser and strauss‟s ( ) grounded theory. in contrast to deductive research where an existing theory is either supported or rejected by testing its predictions, the grounded theory approach is characterized by research in which a theory is developed from (i.e. becomes grounded in) a series of observations. this approach is suited to examining the experience of cpce where there is still an insufficient theoretical basis to draw from. in working closely with mr. richard doll at the british columbia cancer agency, thirty cpce will be recruited at the beginning of their treatment. this will include participants of varied age, education level, english proficiency, length of time living in canada and ethnic status (immigrant or generational canadian). the setting is a major canadian city that is home to a large chinese population ( %) of varying age and degrees of acculturation. an equal number of men and women as well as a varied selection of cancer types will be recruited in order to minimize the possibility of obtaining gender- or cancer-specific information. over the course of one year, i will conduct a series of semi-structured interviews with each participant. a review of the literature has identified a number of possible areas for discussion including cultural beliefs, family and peer support, communication difficulties and mental health (liu, ). the patient‟s condition (either recently diagnosed, recently treated with promising results, recently treated with uncertain results or palliative) will be noted at the time of each interview. interviews will be recorded, transcribed and coded. themes that emerge from an ongoing examination of the data (using the nvivo qualitative data analysis software) will direct the focus of subsequent interviews. this corrective feedback will continue until a general theory emerges. significance and future directions. there is a paucity of literature to inform cancer care professionals about the unique psychosocial experience of cpce. the proposed study is situated within a broader research program, which will attempt to develop a theory to explain the overall experience of cpce in the british columbian cancer care system. in later doctoral research, i hope to build on the current study by exploring other dimensions of the patient‟s experience including the physical and spiritual components. in developing this theory, it is hoped that new insight will be provided for health professionals and policy makers working to improve the quality of care for cpce. the theory may also be used to generate additional research to explore the experiences of other minority groups in cancer care or more general health care settings. appendix b literature review in this appendix, i will provide a review of the relevant literature to inform my inquiry into the cultural experiences of iyas with cancer. this research is at its core an inquiry about cultures. as such, this chapter will begin by conceptualizing culture and in turn locating the self within this concept. the cultural experiences of iyas with cancer are complex and diverse. no single body of literature could wholly capture their experiences. i have therefore constructed this review, and thus my inquiry, around three domains of cultural knowledge: the experience of immigrants, individuals transitioning from adolescence to adulthood, and the culture of cancer. to my knowledge, no previous research has specifically focused on the overlap of these three knowledge domains. a knowledge gap will be identified over the course of this literature review. it is the aim of the current study to address this gap. this collection of knowledge will serve neither to limit the current research inquiry, nor to generate testable hypotheses a priori; rather, this base of knowledge will help to sensitize me to the range of possible experiences of iya with cancer. although i am not immune to my own biases and worldviews, a broadened awareness of past scholarships will prepare me to receive fieldwork conversations and interactions with a more open mind. this open-minded attitude will be central to this inquiry, a point to be described in more detail in chapter . b. the experience of immigrants in order to make sense of the present experiences of iyas with cancer, it is necessary to understand their cultural past. i therefore begin this section by describing some of the circumstances that may motivate immigration. following this overview, i consider some of the significant dimensions of many immigrants‟ experience of transitioning from their community of origin to their new community, including challenges to the family integrity and the integral role of language. although no single narrative can captures the lives of all immigrants, i believe an appreciation of the research described below allows me to better contextualize each individual‟s unique narrative. b. . pathways of immigration. every year, an increasing number of newcomers from more than regions of the world arrive in the province of bc seeking education, employment, safety, refuge or the promise of a better future. at present, bc‟s population is made up of . million individuals who were born outside of canada. the most frequently reported non-english mother tongues include punjabi, mandarin, cantonese, german and tagalog, with over , individuals who speak neither english nor french (scott, harmsen, prictor, sowden, & watt, ; statistics canada, ). although often colloquially referred to as “immigrants”, newcomers may be broadly distinguished into two different groups. refugees or asylum seekers as referred to by some scholars account for roughly % of newcomers to canada (statistics canada, ). in their homeland, they often resided in conditions of political or economic insecurity. their decision to emigrate is often sudden or forced. the journey of refugees is often fraught with fears and uncertainties. many refugees sustain deep physical or psychological wounds in their homelands that remain long after their escape (liebkind & jasinskaja-lahti, ). historically, events such as the vietnam war and cold war as well as civil unrest in haiti and the middle east have resulted in mass displacement of individuals to various countries of the world (vernez, ). unlike refugees, immigrants are largely motivated to immigrate by pull factors such as educational opportunities, and social and economic prosperity in the new country (chen, gee, spencer, danziger, & takeuchi, ). the decision to leave the home country can be a life- changing one and is often only arrived at after having carefully weighed all of the possible gains and losses. consequently, immigrants are often psychologically more prepared to transition to a new sociocultural context than refugees. of these two groups of newcomers whose experiences may be vastly different, the present inquiry will solely examine the experience of immigrants. many economic and social forces are at work as immigrant families decide to leave their home country for a new country. a comprehensive survey of newcomers to canada found that the most common reasons for immigration included reuniting with family and friends, improving the future for one‟s family, and seeking better work and educational opportunities (statistics canada, ). once immigrants arrive in their new sociocultural milieu, their lives may unfold in vastly different ways. the report of the longitudinal survey of immigrants to canada study ( ), six months after arrival % unemployed and about one-third reported not having enough money to meet their basic needs. immigrants may also experience challenges as a result of language barriers, a lack of recognition of previous training and education, or a loss of social supports. despite the challenges of settlement and integration during the initial period post- immigration, most immigrant families are sustained by hope for a better future (statistics canada, ). they have a positive social attitude that can take them on an upward social trajectory. a vast majority of immigrant children and their parents perceive school and education as pathways to success in their new cultural milieu (krahn & taylor, ). when asked to complete the statement, “in life the most important thing is…” many immigrant youth will respond with some reference to their school (suárez-orozco & suárez-orozco, ). although some immigrants engage in upward social mobility over the course of their residency in a new country, a large number of immigrants increasingly struggle over time. a number of studies have observed that although immigrants arrive with above average health, more positive social attitudes, and higher academic performance and aspirations – potentially an artefact attributed to the selection bias fostered by canadian immigration policies (see li, ) – these advantages decline over time (beiser, hou, hyman, & tousignant, ; blake, ledsky, goodenow, & o'donnell, ; krahn & taylor, ). for example, research has found lower rates of depression and alcohol dependence amongst newly arrived immigrants as compared to both long-term immigrants and a canadian-born sample (ali, ). moreover, the chances of reporting chronic health conditions increased with increased length of residence in canada (alegria, sribney, woo, torres, & guarnaccia, ; pérez, ). b. . family dynamics. the process of immigration has the potential to destabilize family life, creating complex patterns of fragmentation and reunification (suárez-orozco, todorova, & louie, ). traditional immigrant narratives often describe a family member, often the father, acting as the “migration pioneer” in leaving his home for foreign, uncharted lands. his hope is to find a new world that will bring social and economic prosperity to his family. in these circumstances, the child is left at home in the care of the remaining parent or relatives while the pioneer attempts to settle and establish him or herself in the new world. once settled, parents may send for children, allowing them to be reunited after a lengthy period apart. conversely, a child may be sent to a new country to learn english and get an education while their family remains in the native country. the child may live with relatives or host families. in both scenarios, complex attachment patterns may develop. often grandparents or other relatives may become the source of safety and security for a child that is left by the parents. in some collectivistic cultures where a child is raised by a community of individuals, this may be perceived as normal (suárez-orozco et al., ). the extended separation due to immigration may be experienced quite similarly to a parent going off to work. for other immigrant youth, being separated from the parents may be experienced as abandonment (brown & whiteside, ). the child may come to believe that his parents do not want him, leaving him feeling unloved or inadequate. in light of these circumstances, reunification of the family may be quite disorienting for the youth. early attachments formed with non-parent caregivers may become broken through immigration. at the same time, the immigrant youth may be required to reacquaint himself with his parents, people who may seem entirely foreign to him. children who are transposed from one family context to another during their formative years may struggle later in life in developing healthy attachments (bayer, sanson, & hemphill, ; suárez-orozco et al., ). according to bowlby‟s ( ; ; ) attachment theory, unpredictable care-giving patterns may foster confusion, hopeless and fear in children (ainsworth, ). they may try to deal with stress in very incoherent and ineffective ways. moreover, parents who struggle themselves with the economic and social difficulties of moving to a new country may find less time to spend with their children. as a result, immigrant youth may experience their parents as being physically or psychologically unavailable to them. another often observed phenomenon amongst immigrant families is the inversion of power hierarchies (bacallao & smokowski, ). while many practitioners would describe a desirable family structure as one involving the parents taking charge, setting rules and making decisions; the children often find themselves assuming adult-like responsibilities within the immigrant household. this often occurs in situations where parents depend on their children to serve as linguistic or socio-cultural interlocutors in the family (lee, ). this family structure, although not inherently harmful, has the potential to create challenging family dynamics (minuchin, ). while neither cognitively nor socio-emotionally prepared for their adult-like responsibilities, immigrant children may feel overwhelmed by the pressures to uphold their family (tseng, ). furthermore, practitioners have observed how this accelerated maturational process can lead to significant and enduring distress for the children long into their adulthood (westwood & wilensky, ). at the same time, an absence of proper parental authority may lead to children growing up unconstrained, unguided and unsupported. children who grow up in unstructured environments may experience anxiety due to a perceived absence of safety (bowlby, ). their worldview becomes one where they may depend only on themselves because they have learned that no one will help them in their time of need. such experiences, although not inexorably etched into the pathway of immigration, are nevertheless important considerations in the understanding of immigrant family dynamics. crosscutting these patterns of family dynamics is a divergence in value and belief systems between immigrant parents and their children. portes ( ) coined the term "dissonant acculturation”. it refers to the phenomenon whereby immigrant adults adapt to western culture at a slower rate than those who arrive as children or who are born in the west. dissonant acculturation has been attributed to a number of factors (phinney, ong, & madden, ). from the outset of immigration, older immigrants have accumulated more years of experience and cultural influences in their country of origin than younger immigrants. their years of socialization in a different cultural context have created a more deeply-rooted culture that is not as easily amenable to change. children and younger immigrants are often more adept at learning and adopting new lifestyles, attitudes and social practices. moreover, the contact and exposure children have with the new society – in the form of schools, peer groups, popular media – is often more pronounced and enduring than that of adults (suárez-orozco & suárez-orozco, ). due to continuous and regular contact with social institutions such as school and the mass media, immigrant youth are able to quickly develop competencies suitable to survive in their new society. immigrant parents, on the other hand, have fewer opportunities to do so. during the early years of resettlement, many will find employment in culturally segregated workplaces and interact mostly with their own cultural communities. these factors create a generational divergence between immigrant adults and youth. this dissonant acculturation increases with time in a new country. b. . language as a significant factor in immigration. a further factor that fosters this dissonant acculturation is the different rate of language acquisition amongst immigrants, particularly between younger and older immigrants. a combination of age at arrival in canada, length of time in canada and educational attainment significantly predict an immigrant‟s english proficiency (rumbaut, ). the younger non- english speaking immigrants are at the time of migration, the more likely they will possess a high level of english proficiency. this is rooted in a biological predisposition for language acquisition that, over time, diminishes as the neuroplastic properties of the brain decreases (birdsong, ). where language serves as a fundamental tool for gaining access to valuable social and institutional resources (statistics canada, ), language barriers can often act as mechanisms for creating social disparities (carrasquillo, orav, brennan, & burstin, ). because a large proportion of immigrants come from non-english speaking backgrounds, it is not surprising that researchers have found lower rates of health care access amongst immigrant groups as compared to the overall population (centers for disease control and prevention, ; chen, ). thus, many social forces exist that pressure non-english speaking immigrants to learn to communicate in the majority language. at the same time, researchers have observed that, over time, people‟s commitment to their ancestral language becomes fleeting at best (rumbaut, ). a multiethnic study of young adults in los angeles found that . % of first generation immigrants grew up speaking a language other than english and % preferred to only speak english at home (rumbaut et al., ). amongst third generation immigrants, there was a striking reversal of preferences. several studies have found similar dramatic declines in retention of ancestral languages and acquisition of english across multiple immigrant generations (pew hispanic center, ) and within a given generation over time (rumbaut, ). although some languages survive longer when situated within highly concentrated ethnic communities, even the most deeply-rooted languages will die out over the course of two or three generations (rumbaut, ). rumbault ( ) notes that “[i]n the united states, a country lacking centuries-old traditions and receiving simultaneously millions of foreigners from the most diverse lands, language homogeneity came to be seen as the bedrock of national identity. immigrants were not only expected to speak english, but to speak only english as a prerequisite for social acceptance and integration” (p. ). in spite of the prevalence of statistics and studies that describe the precipitants of language acquisition, what remains unexamined are the experiences of immigrants as they transition linguistically and socially into a new community. what external or internal acculturative pressures do iya experience in learning to speak a different language? how do they cope with these pressures? b. young adult culture little scholarly work has been done to theoretically frame the study of the developmental period of life immediately following adolescence (nelson et al., ). this is a significant time in the life of an individual, often characterized by transitions, distress and conflict. while experientially considered by many to be a distinctly different developmental period, research often subsumes these individuals under either the adolescent or adult categories (adolescent and young adult oncology progress review group, ; arnett, ). the result is a dangerous overgeneralization in which practitioners and researchers construct their knowledge base of “young adults” from studies using adult samples, a demographic category that may include individuals as old as . this section highlights and distinguishes the period of life immediately following adolescence and before adulthood, one that some scholars have referred to as “emerging adulthood”. b. . conceptualizing emerging adulthood. it has only been recently that the concept of emerging adulthood has surfaced within the scholarship of western industrialized societies. emerging adulthood is considered a unique period of development in the life course. arnett ( ; ) proposes five conceptual features that set it apart from adolescence and adulthood, including: ) exploring identity especially in the areas of work, love and world views; ) experiencing change and instability; ) a heightened focus on the self with few obligations to others; ) feeling in-between, being neither an adolescent nor an adult; and ) perceiving potential to steer life in any number of desired directions. survey studies with samples of individuals aged to have further defined the concept of emerging adulthood to emphasize subjective experiences like relational maturity (i.e., accepting responsibility for the consequences of actions, establishing a relationship with parents as equals) and family capacities (i.e., running a household, financially supporting the family) over specific life events like marriage, completion of education and starting a career (nelson & barry, ). little importance was ascribed to biologically- and age-defined transitions such as reaching a certain legal age or height, being legally allowed to drink or having sex. b. . between and within groups differences. although the construct of emerging adulthood has been well defined and validated in western, industrialized settings, some have questioned its generalizability to other ethnic groups (facio & micocci, ; nelson, badger, & wu, ). the very notion of developmental periods or stages of life is a very western notion structured by a legal age of majority and the timing of education. even amongst western industrialized societies, the conferring of adult responsibilities adhere to different timelines are dependent on regional, if not familial factors. indeed, the cultural construction of emerging adulthood becomes evident upon examining different ethnic groups. for example, a survey study of university students in china revealed that that the majority felt they had reached adult status in their early twenties, had different criteria for adulthood, and behave differently and have different belief systems as adults (nelson et al., ). a study of argentinean adults also found different endorsement patterns of criteria for adulthood (facio & micocci, ). amongst adults of aboriginal canadian heritage, a greater emphasis was placed on interdependence and the maintenance of harmony, as well as the role of children and family (cheah & nelson, ). thus, the timing and construction of emerging adulthood is not universal but rather specific to ones cultural upbringing. despite differences between ethnic groups, comparative studies have indicated that immigration may have a marginal effect in shifting conceptions. for example, chinese and latino university students studying in the united states had more similar views of emerging adulthood when compared to white american students, than their counterparts in china and latin america (badger, nelson, & barry, ; facio & micocci, ). these findings suggest that individuals who immigrate to a new ethno-cultural setting may to some degree adopt local constructions of emerging adulthood. there is also indication that the perspective of emerging adulthood differs between children and their parents. one study compared criteria for adulthood as espoused by parents and their emerging adult children (nelson et al., ). although many items were similarly rated as being important and unimportant, children consider some processes to be significantly more important for adulthood than their parents. this included accepting responsibility for personal actions, achieving relationship with parents as equals, being financially independent from parents and deciding on beliefs/values independently of other‟s influences. b. . summary of a young adult culture. overall, the construct of emerging adulthood is at its core a transitional period during which individuals are largely ambivalent about their status as adults. individuals in this developmental period have passed adolescence but have yet to self-identify as adults with all the relational and familial capacities that characterize adulthood. although now conceptually well- defined, the research community continues to ignore the lived experiences of these emerging adults. missing from the plethora of survey studies with researcher-defined items and closed- ended response scales are the actual voices of young adults who experience the uncertainties and instabilities of this period of life. similarly, although one survey study has examined how the construction of emerging adulthood differs between children and their parents (nelson et al., ), little is known about how such differing viewpoints impact their relationship. thus a significant knowledge gap exists in understanding the experience of young and emerging adults. this direction of research inquiry is of particular importance amongst immigrant and cross-cultural scholarships. as past studies have indicated, the experience of emerging adulthood is not universal but rather specific to ones cultural upbringing. how, then, might the transition to adulthood look different for those also experiencing immigration and adapting to a new social context? a discovery-oriented, individual-centered research approach is desperately needed to explore the cultural experiences of young adults and specifically iya. such research would serve to inform mental health professionals about how to better support iyas during their many transitions in life. b. the culture of cancer the term “cancer” has many meanings. as a biomedical term, it refers to a diagnostically diverse category of disease states where normal cells of the body lose their ability to self-regulate and begin reproducing uncontrollably (canadian cancer society, ). this cellular process can manifest itself in a plethora of different ways, many of which lead to pain and suffering for both the individual patient and those around him or her. the symptoms can be acute and pressing, or acute and intense. the course of treatment for this disease state can also take on many forms from surgery to radiation therapy to chemotherapy to gene therapy. as such, the personal narrative of each cancer patient is wholly unique. this section reviews only some of the possible experiences of individuals with cancer found in research. i will begin by reviewing research that suggests young adults may be a marginalized and thus particularly vulnerable population in cancer care. this will lead to a discussion of the important role of social support during illness and the influence of culture in support seeking behaviours. from this review, a case will be built for an increased need for research into the experience of young adults and immigrants with cancer using an approach that not only honours their voices but also recognizes the cultural influences that have shaped their lives. b. . young adults with cancer. rowland‟s ( ) developmental model of adaptation to illness suggests that, although there are common experiences associated with the diagnosis and treatment of cancer, the specific needs of patients may vary significantly across different ages or developmental periods of life. the experience of young adults with cancer is of particular concern. since the early ‟s, cancer incidence among young adults aged to years has been rising faster on an annual basis than that of cancer diagnosed in both younger children and older adults (bleyer & albritton, ). today, more than , young adults are diagnosed with cancer in canada and the united states each year (bleyer & barr, ; canadian cancer society's steering committee, ). despite these staggering figures, young adults with cancer are marginalized by both our cancer care system as well as the research community (adolescent and young adult oncology progress review group, ). young adults are in a transitional period in their lives, no longer an adolescent and yet not quite an adult (arnett, ). as a result, they have significant psychosocial needs that are often quite different from either children or older adult patients. for example, research has found that young adults may experience cancer as much more distressing and debilitating than either older adults or children. compared to cancer patients aged and over, younger adults were found to be more profoundly impacted by their disease (williamson & schulz, ). researchers accounted for this in a number of ways. young adults usually have had fewer experiences with illness and disability. they also have a high expectation about their level of functioning. young adults are often looking to the future. at a time when many are assuming significant responsibilities, planning out their careers and forming intimate relationships, a cancer diagnosis can be especially devastating and life-changing for young adults. the experience of cancer often leads to concerns about body image and self-esteem particularly amongst young adults (evan, kaufman, cook, & zeltzer, ). disfigurement of the body due to the disease progression and treatment (e.g., hair and weight loss), reduced energy levels, missed social opportunities or classroom time because of visits to the hospital all contribute difficulties in developing a healthy self-image. young adults, who would otherwise be in the best health of their life, may disengage from their supportive social relationships. many become reluctant to commit to intimate relationships for fear of an uncertain future (evan et al., ). alternatively, young adults may feel resolved to being self-reliant and would feel ashamed to seek help (taylor et al., ). these experiences form a vicious cycle where poor self-esteem fosters increasing disengagement from life and vice versa. young adults with cancer may withdraw themselves from their social resources at a time when they may need it the most (dimatteo, ). thus, for young adults with cancer, their life is a lonely struggle and their future looks bleak. due to advances in cancer treatment, however, more young adults than ever before have overcome their cancer ordeal. from to , -year survival rates amongst young adults with cancer have increased from to percent (bleyer & barr, ). conditions that were once fatal have become more chronic and treatable. it is now estimated that in every young adults is a long-term survivor of childhood cancer (national cancer policy board, ). moreover, for many young adults who are survivors of cancer, an end to treatment, returning to school or work, leaving home, dating, starting a family or career are all significant milestones in their transition into adulthood (adolescent and young adult oncology progress review group, ). in this changing landscape, cancer care providers must broaden their attention to supporting not only the immediate medical needs of young adults, but their long-term psychosocial needs as well (soliman & agresta, ; stuber, shemesh, & saxe, ). b. . social support during illness. the importance of social support in the life of young adults with cancer cannot be understated. studies have repeatedly found that support can provide significant and lasting benefits during times of illness. social support serves as a buffer to stress (tyson, ), increases a patients‟ adherence to treatment (dimatteo, ) and leading to lower rates of mortality (kroenke, kubzansky, schernhammer, holmes, & kawachi, ). given its significant role in the cancer patient‟s recovery process, an increased understanding of social support would aide my interpretation of this current research. this section provides a framework for understanding the construct of social support and its potential sources. taylor and colleagues ( ) define social support as “the perception or experience that one is loved and cared for, esteemed and valued, and part of a social network of mutual assistance and obligations” (p. ). this definition highlights how support may be either real or perceived. house and kahn (house & kahn, ) further subdivide the construct into three types:: informational, instrumental and emotional support. informational support refers to helping another to understand a stressful event better or to ascertain what resources and coping strategies may be needed to deal with it. instrumental support includes tangible assistance such as services, financial assistance, and other specific aid or goods. emotional support refers to providing warmth and nurturance to another individual and reassuring the person that he or she is a valuable person who is cared about. research has found that as we grow up, our sources of social support may change, a process that varies by culture. amongst euro-americans, for example, the predominant sources of social support prior to grade four are parents or significant care providers (wentzel, ). up to grade , same-sex peers slowly take the place of parents as sources of support and connection. during young adulthood, romantic partners, friends and other adults are identified as sources of support (connolly, furman, & konarski, ; laible, carlo, & raffaelli, ). zebrack and colleagues ( ) found that the social support networks of young adults with cancer seem to be consistent with the above findings. what is notable in this study, however, is that medical professionals misunderstand the relative importance of particular aspects of a young adult cancer patient‟s life. medical professionals perceived the biomedical, psychosocial and informational needs of young adults to be higher than what young adults rated. furthermore, more young adults ranked the relative importance of opportunities to meet other young people with cancer as greater than the importance of support from family and friends. these findings highlight the need for medical professionals to be more informed about the needs of their young adult patients. when misunderstandings occur, patients‟ needs will inevitably become neglected. this disconnect may serve as a hindrance to providing the most person-centered and thus effective care possible. b. . ethno-cultural influences on support seeking. consideration of the psychosocial needs of young adults is overlaid by complex ethno- cultural factors (kim et al., ). for example, one‟s cultural upbringing may influence the type or source of social support that one considers to be most valuable. likewise, individuals may vary significantly in the way they express a desire for support. this culturally-informed perspective is vital for medical and mental health professionals to provide the most effective and holistic cancer care possible. regrettably, there have been few studies that have contextualized social support within a cultural framework. many of the exceptions adopt a largely positivistic, quantitative paradigm that silences the voices of individual participants. take, for example, moilanen and raffaelli‟s ( ) multiethnic survey study that compared european-, asian-, cuban-, latin-, and mexican americans college students on their support seeking behaviours. participants were asked to rate a series of questions on their degree of connectedness with various individuals, like parents and friends. their findings were reported as mean levels of support sought and received aggregated by ethnic group and gender. a similar study of asian american college students found that they were significantly less likely to draw on familial support than their euro-american counterparts (taylor et al., ). social psychologists have also attempted to shed light on the nature of social support amongst different ethnic groups. in one experiment, asian and euro-american participants were asked to give their appraisal of a woman who, upon being exposed to a stressful event, either sought out support or bore the stressor (chu, kim, & sherman, ). it was found that asian american participants evaluated the woman more negatively if she sought support. conversely, euro-american participants saw the woman more positively after watching the same video. thus, it was concluded that not only are asian americans less likely to seek out support, but they would also perceive others more negatively. in another study, when students of asian ethnicity underwent a priming task that made them reflect upon their relationships, they were not only less likely to seek support, but also expected that any support would be less useful (kim, sherman, ko, & taylor, ). these findings, if collectively interpreted, support the widely held belief that individuals of asian ethnicity are less likely to seek out socials support than their caucasian counterparts in times of stress. this conclusion is consistent with qualitative and quantitative studies amongst asian american cancer patients (ashing et al., ; m. s. j. chen, ; gany, herrera, avallone, & changrani, ). a number of explanations exist to account for this. bolger, zuckerman, and kessler ( ) found that people who draw on their support networks during times of stress may find it further distressing because it is an admission of weakness and reduced one‟s self-esteem. moreover, people, especially those of collectivist cultures who place high value in group harmony, may be reluctant to seek the support of family members because it was perceived as taxing of others‟ (ashing et al., ). in fact, older cancer patients of asian ethnicity are sometimes unwilling to seek their children‟s support for fear of being a burden. in order to make sense of a reluctance to seek support based on the perceived impact on others requires a worldview that is premised on the interconnectedness of people. this is juxtaposed against an individualistic worldview that would conceptualize social support as a specific and explicit transaction (kim et al., ). thus, in reviewing the social support literature, kim et al. ( ) conclude that there may be differences in how people seek and receive social support. moreover, what constitutes effective social support may differ by culture. with this knowledge, health care professionals must in turn provide support in culturally sensitive ways such that the support is welcomed rather than shunned as a perceived burden to the supporter. for example, it has been proposed that social support resources that do risk disrupting relationships and do not explicitly discuss the problem may be most readily sought out by individuals of collectivistic values (kim et al., ). these findings have resulted in taylor et al. ( ) constructing the binary explicit and implicit social support, the latter referring to “the emotional comfort one can obtain from social networks without disclosing or discussing one‟s problems vis-a-vis specific stressful events” (p. ). in large part, these studies and explanations reinforce the east-west, individualistic- collectivistic binaries that many scholars have come to rely. what remains lost in this massive body of research are the voices of individuals who struggle in their lives and either embrace or turn away from their social resources. in spite of what we know about the relative tendencies of large ethnic populations, our understanding of the complex experiences of the individual remains unexplored. what discourages an individual from seeking support? how does someone‟s perception of social support change when experiencing a life-threatening illness or the transition of immigrating to a new country? what forms of support are most meaningful? clearly, more research is needed to unravel these complex inquiries. beyond these inquiries, however, exist a more fundamental concern arising from studies that attempt to make generalizations based on comparison groups that are arbitrarily constructed. what is an asian american? i find myself wondering. what are the common traits or experiences that supposedly characterize this group? i suspect that there may be no easy answer to these questions. even if such questions are overlooked, one is left to wonder about the clinical utility of knowing that, on average, people of asian ethnicity are more reluctant to seek out social support. how would an asian american cancer patient that i am supporting be similar to the asian americans and different from the euro-americans that are represented in these studies? in order to better understand people‟s experience of cancer, research efforts need to adopt a more person-centered, exploratory approach that acknowledges the profound impact of our individual cultures. b. . summary of the culture of cancer. the literature suggests that young adults may face significant struggles during their cancer ordeal, and given their transitional stage in life, these struggles may be uniquely difficult. in providing service to young adults with cancer, the challenge, then, for medical and mental health professionals is in understanding the experiences of this age group. moreover, a substantial body of literature has underscored the importance of social support and its cultural contextualization. where mobilizing the social resources of cancer patients becomes an integral component of holistic cancer care, medical and mental health professionals must be aware of the complex role of culture in support seeking. b. summary of literature review in all, the world of an iya with cancer may be filled with turbulence and uncertainty. presently, there exists no literature to guide our understanding of the experiences of this population. scholars and practitioners may only piece together a rough understanding using associated literature. often these research efforts overlook the experience of young adults and immigrants. an increased understanding of the experiences of iya with cancer from a person- centered and culturally-sensitive lens becomes a necessary component of providing them the most appropriate, effective care possible (kagawa-singer & blackhall, ). the current research is situated at the interface of three major transitions in an individual‟s life; settling in a new country, becoming an adult and experiencing a life-threatening illness like cancer. adjusting to these transitions is often difficult and fraught with pressures and conflict. mental health practitioners and caregivers who seek to effectively support individuals during these trying times must be well informed about the experience of individuals engaged in these transitions. regrettably, to date, research attention has focused primarily on adolescents and adults with relative neglect for the transitional period referred to as emerging adulthood. what is more, research has largely been of a positivistic-quantitative paradigm that sorts them into arbitrarily constructed ethnic categories and in the process, leaves out the voices of the individual. appendix c conceptualizing “culture” and the self our increasingly mobile and electronically interconnected world has afforded people from different backgrounds unprecedented opportunities to interface. within this world, the term “culture” is casually and pluralistically referred to. exchanges between two individuals or groups from different parts of the world are referred to as cross-cultural exchanges. neighbourhoods or cities can differ in the degree to which they are multicultural. within popular and academic circles alike, multiculturalism is a desirable social phenomenon that encourages people to consider life from a different perspective and develop empathy for a fellow human being (fowers & richardson, ). people can be of high or low culture. they can be straddling two cultures, go back to their cultures or even have no culture. multiculturalism is, in fact, “alive and well”. our everyday existence is filled with “culture” and yet it remains a term that is poorly understood. even within cultural-anthropology and -psychology scholarship, there exists different conceptualizations of the term culture (geertz, ; mead, ). contemporary scholars have also debated the similarities and differences between culture and related constructs such as race and ethnicity (american psychological association, ; helms & talleyrand, ; phinney, ). this pervasive neglect in explicitly defining culture can spawn significant confusions about what exactly a writer, reporter or casual discussant is claiming. given the centrality of culture within the proposed research inquiry, i believe that it would be useful for audiences of this research to understand my own concept of culture. in the section that follows, i wish to present my interactions with the term as a social construction and then contextualize these experiences within past scholarships. in order to personally define culture, i find myself thinking about all that culture is not. for me, culture is not a collection of people of similar traits or backgrounds; nor is it a descriptor applied to an individual or group. i believe that one ought not be able to physically point to a culture or construct one by delineating ephemeral boundaries around a set of people or a place. it seems inappropriate and illusory to describe people as “belonging to culture x”, “marginalized by culture y” or “having their feet in two cultures”. such statements are perhaps most problematic when considering the difficulty of the semantic enterprise of defining with any degree of precision a cultural label like “asian” or “collectivistic” or “masculine”. given the plurality and fluidity of our personal identity, it would be difficult to identify someone as belonging to one or more of these categories (christopher & bickhard, ). considering these difficulties, i find that i am only able to speak sensibly of culture in the past tense similar to the way i speak of memories, heritage or ancestry. thus, in my mind, a culture is a related collection of antecedents that dynamically influence and shape our present personhood. we may have more than one and perhaps an infinite number of cultures. to say that “i am of chinese culture” is to subjectively refer to a collection of antecedents – such as memories of living in china, teachings from my parents, confucian belief systems, familial values, cooking and eating practices – that influence my current actions and reactions. i may also be of a graduate student culture, which refers to another collection of antecedents. thus, the referential framework for this conceptualization of culture is defined by past common experiences, not socio-political or geographical boundaries. geertz‟s ( ) view of culture is perhaps most closely aligned with my own. he wrote that culture “denotes a historically transmitted pattern of meanings embodied in symbols, a system of inherited conceptions expressed in symbolic forms by means of which men communicate, perpetuate, and develop their knowledge about and attitudes toward life” (p. ). it may be argued that this description neither makes an allusion to nor entails the notion of culture as a “shared” experience as many scholars describe (fowers & richardson, ; kwak & berry, ; phinney et al., ). in my mind, culture is not shared: we do not “belong to a culture” in the same way as we might have membership in an organization. instead, culture is shared by two people in so far as they report antecedents that have similarly shaped their lives. for example, my experiences growing up in nova scotia have instilled in me an appreciation and openness to strangers that i might share with others of east coast culture. juxtaposed against culture is the term, ethnicity. whereas i understand culture to be personally-defined and situated in past experiences, i consider ethnicity to be more socially constructed. ethnicity is something that can be physically pointed to, often with geopolitical boundaries as a frame of reference. for example, i am of nova scotian, canadian and asian ethnicities. it would therefore be appropriate to use ethnicity as a label or description of an individual. that is, to self-identify as being of chinese ethnicity is equivalent to describing myself as having been born and raised in china. in referring to a group of people as being of asian ethnicity is an objective claim that is not entirely informative in understanding the influences that have shaped a person to be what he or she is today. thus, it is the endeavour of this proposed project to understand the contextualized culture of iyas with cancer. despite the incredible uniqueness of each individual‟s experience of cancer, this study is premised on the belief that there exists a culture – some collection of antecedents – that underlies the experiences of individuals with cancer: to mention cancer is to conjure up feelings of pain, uncertainty and fear. to refer to someone as a cancer survivor is to recognize the struggles an individual has endured and to sympathize and admire their courage. a number of conceptualizations of culture seem to be consistent with my own. gramsci ( ) describes understanding oneself as necessitating a recognition of the self “as a product of the historical process to date, which has deposited in [the self] an infinity of traces, without leaving an inventory” (p. ). gramsci‟s image is both rich and heuristic. it suggests that the process of self-understanding involves “compiling an inventory” of these “infinite traces” or cultures that become imprinted in the self. thus, the self has been imprinted on by past experience. this being said, i believe that it is inaccurate to view the self as a mere computer that executes actions based on programs. rather than being a passive recipient of our cultural experiences, i believe that we possess an incredible amount of agency. our culture is dynamic: the antecedent experiences operate with different salience at different times depending on the context. as frank ( ) vividly describes, we are like mapmakers. culture is not simply a cognitive map that people acquire, in whole or in part, more or less accurately, and then learn to read. people are not just map-readers: they are map makers. people are cast out into imperfectly charted, continually shifting seas of everyday life. mapping them out is a constant process resulting not in an individual cognitive map, but in a whole chart case of rough, improvised, continually revised sketch maps. culture does not provide a cognitive map, but rather a set of principles for map making and navigation. different cultures are like different schools of navigation designed to cope with different terrains and seas. (p. - ) as such, we not only choose the maps that we read, we create the maps that we chose. culture is thus a dynamic concept and the self is an active agent in its construction. in summary, i perceive a person‟s culture to be a related collection of antecedents or past experiences that have shaped (or imprinted) ones current personhood. the process of self- understanding involves taking an inventory of these antecedents. this conceptualization of culture informs the current research inquiry. in order to understand the current experiences of iya with cancer, the experiences will need to be contextualized within the participant‟s personal cultures. by consequence, a central task of this research will be to provide participants the space to engage in their inventorying process. appendix d culture-gram appendix e journal entry: privilege and responsibility location: hotel / / : pm attended experiential workshop entitled “standing target and shifting privileges: exploring our power, privilege and access to resources”, facilitated by two members of an anti-oppression community advocacy group in california. i was attracted to the title given my recent self-reflections catalyzed by the culture-gram exercise. this workshop gave me a chance to further explore this notion of privilege and how it relates to my personal identity. the facilitators defined the terms oppression and privilege (which involves the distribution of power, access, opportunity, resources, etc.), and identified the “four pillars of oppression” (i.e., how oppression is maintained). i was aroused to the idea that privilege maintains oppression, that there is both a progenitor and target of oppression and that there is a system that maintains oppression. it was quite thought provoking to consider that both the privileged and targeted group collude to maintain this power relationship. the target-oppressed group may for example approximate the privileged group in order to access power and privilege. “it takes two to tango”, as the saying going. then, it was onto the exercise. the facilitators prefaced it by saying that we may easily identify the areas in our lives where we have experienced oppression, but that we often don‟t reflect on our privileges. they in turn invited us to identify the privileges that i have been advantaged by over the course of my life that have led me to where i am today. what a paradigm shifting exercise this was! my eyes opened to the many privileges that are part of my life that have allowed me to get to where i am today. privileges of being financially stable, well-educated, male, heterosexual, cisgendered, an adult with good health, a stable family nucleus and living in a democratic and free society. a wave of gratitude overcame me that caused my body to shiver. how wonderful my life has been, i reflected. how privileged i have been. i imagined how different my life would have been had i been female, or questioned my sexuality, or less financially stable or had a medical condition that prevented me from enjoying the many physical activities that i do. my gratitude was quickly displaced by an outwardly sympathy for those who do not enjoy these privileges and suffer the incapacitating forces of oppression. i thought about those many immigrants who have recently come to this country, do not have high linguistic proficiencies or do not have the knowledge to effectively navigate social institutions in canada; and the immense difficulties that they face. the reflections that group members subsequently shared was equally profound. one individual noted the interplay between her oppressed and privileged identities, and her conflicting emotions towards confronting her own privileges. these experienced resonated with me. in recognizing my privileges, and therefore feeling gratitude and sympathy, and therefore guilt, i struggle with how i am to proceed. i cannot disown the privileges that i own; they are a part of me whether i wish to be associated with them or not. the alternative then would be to embrace these privileges, and yet such an action may risk further oppression of others, given the intimate bidirectionality of the privilege-oppression relationship. i feel paralyzed. how do i proceed? amidst this paralysis, i thought about that adage, “with great power comes great responsibility.” the idea of taking responsibility, of taking action, of being an agent for change has been increasingly at the forefront of my mind. i do feel a sense of responsibility to help those who confront social and institutional challenges by virtue of their minority status and marginalization. i am educated, skilled as a professional, can communicate in english with a certain fluency. i am therefore well positioned to enact change. this line of thinking brings me out of a position of paralysis and guilt, and into a position of empowerment. other group members remarked that privileges can be both as a result of perception (e.g., female beauty) or earn through hard work (e.g., financial security). moreover, it seemed that it is our perceived privileges that result in our sense of guilt. this also resonates with me. i reflect on my relationship with my parents, my indebtedness to their sacrifices and experienced hardships, all to set up these opportunities that i have. i am reminded of d.w. sue‟s poignant baseball metaphor depiction of privilege. “george w. bush thought he had hit a triple, but in fact, he was born on third base.” although i have not hit a homerun, i am already on base, and for that i feel indebted and responsible to my parents. the confucian virtue of filial piety or respect for ones parents and ancestors, seems to capture motivations. then again, i experience a certain disconnect with confucian‟s teaching or perhaps preaching of filial piety. it is done out of simple duty, because someone deems it important, whereas for me it is an internal drive. the confucian teaching lacks an effect on me; in fact, i would go so far as to reject it as the very act of following it robs me of my own genuine desire to carry it out. how do i respect my parents though merely adhering a social tradition or following a teaching? i cannot. i would be demonstrating respect in action but lacking respect in emotion. one group member referred to these “unearned” privileges as having been “stolen”. the word “stolen” jars me out of my introspective state. it sounds harsh, even criminal. the word implies a relational action, a thief stealing from a victim. in a way, this might be true for i am indeed realizing resources, power and opportunities at the expense of another. the others are the countless others who continue to be oppressed, to be marginalized. and yet, how do i steal from someone who has never had resources, power and opportunities in the first place. no, i am not stealing from the oppressed. what about stealing from the privileged group? am i stealing from a dominant majority their privileges? how could that be? it is not as though the privileged are somehow entitled to their privileges, that the resources, power and opportunities are theirs to own. they merely play out their lives based on the cards that they are dealt. no, i am not stealing from the privileged either. for me, i am using playing with the cards that i have been dealt. in doing so, i am cautious of not bestowing a heavenly mandate upon myself. i do not want to be the person who will fix things or make things better. i am cautious to not assume on this self-righteous attitude, for who am i really to do so. in lessons learned from a deconstruction of colonial practices (said, ), i recognize the dangers of meaning well and doing research. in the end, i am still unsure what my role is as a health care provider to immigrants and young adults with cancer. i recognize what i don‟t want to do and what i can‟t do but i am confused as i have remaining the void of what i can and should do. appendix f genogram appendix g my life values definition:  “a principle, standard, or quality considered worthwhile or desirable” (the american heritage dictionary of the english language, ).  “cultural values are what you are encouraged to strive for and are encoded in moral standards by which your behaviors and thoughts are publically and privately sanctioned” (chang, , p. ). autonomy: the right of each individual to self-determination, to live as one so chooses – regardless of how they may be perceived by others – so long as one‟s actions do not harm others generativity: the responsibility of each individual to contribute to improving rather than destroying his/her social, physical and ecological surroundings authenticity: the importance of representing ones true self in the world and to other people, and the parallel exploring of oneself to understand ones true self industriousness/diligence: the importance of working hard, planning ahead, being self-driven to realize long-term goals as opposed to fleeting, immediate desires humility: the importance of neither looking up nor down to any individual, regardless of education level, social class, financial situation or institutional position appendix h timeline of major life experiences related to cancer and dying i select physical and symbolic border –crossing experiences in my life because they challenged my presuppositions and perspectives at the time they happened, have sometimes derailed me from my comfort zone, have broadened the horizon of my life, and have shaped me as a multicultural educator. each entry identifies a border-crossing experience, then in parentheses briefly describes its effect on me. / moved to halifax, nova scotia, canada from shanghai, china (being supplanted into an entirely foreign cultural context, disconnected from significant cultural ties except for my parents) - growing up in nova scotia (growing up as an outsider, bearing the responsibility of having to negotiate a new cultural surrounding on my own) / travel back to china for the first time after moving to canada and returning regularly thereafter (realization that i had become a stranger in the land that was born in, the cultural context that i had left felt more foreign than familiar) / / terrorist attacks in the united states (realizing that my life does not exist in an idyllic vacuum and can be profoundly transformed in an instant) - served as property manager for family‟s rental property (maturing quickly and assuming responsibility for things normally relegated to adults) / high school peer dies in a boating accident (increasing salience of the finitude of life, experience of a public grieving process) / / my grandfather dies of old age (my first experience with death in the family) / accompanied nímāmā during her cancer treatment at johns hopkins (first personal experience with cancer in my family) / / nímāmā passes away of cancer (my first experience with death where i felt a strong connection with the person) - work in a cancer research lab during my undergraduate degree (learn about the biological mechanism of cancer and that my interests existed elsewhere) / my mother tells me that i had an older sister who died at birth (i become aware of the special place i occupy in my family and in the eyes of my parents) / write statement of intention for admission application to the counselling psychology program (acknowledging to myself that my career transition has been in large part motivated by my experience in caring for nímāmā with cancer) / move to vancouver (first experience living in a multiethnic society, first time living on my own, apart from my family) / begin graduate studies in counselling psychology (undertaking a major career and life transition, opportunity for self-reflection) / submit national scholarship application (first public admission of intentionality to engaging in career/research activities in cancer care) / discuss suicide assessment in class (being awakened to the possibility of supporting people who may be contemplating death) / attend training workshop for bcca/hospice care volunteers (being introduced to the idea that through confronting death, we learn how to live) / / cycling accident (became frighteningly awakened to my own physical vulnerability and mortality, and the possibility of a physically disabled life) appendix i data log id date time location activity/item type participants code / / : am online email communication david data collection / / : pm online email communication david planning / / : pm online email communication fc planning / / : pm online email communication david planning / / : pm online email communication david planning / / : pm online email communication fc planning / / : am online email communication hr planning / / : am online email communication david planning / / : am online email communication jd planning / / : am online email communication hr planning / / : pm online email communication david planning / / : pm online email communication rd planning / / : am online email communication david planning / / : am online email communication hr planning / / : pm online email communication rd planning / / : am online email communication david planning / / : am online email communication hr planning / / : am online email communication david planning / / : am online email communication rd planning / / waterfront journal entry david reflection / / : am online email communication david planning / / : pm online email communication rd planning / / : pm online email communication david planning / / : pm online ethics application marla, david planning / / : am online ethics application bill borgen planning / / : am online email communication rd planning / / : pm online email communication jm planning / / : pm online email communication jm planning / / : am online email communication david planning / / : pm meeting room volunteer training volunteers data collection / / textual artefact data collection / / textual artefact data collection / / textual artefact data collection / / textual artefact data collection / / textual artefact data collection / / textual artefact data collection / / textual artefact data collection / / textual artefact data collection / / textual artefact data collection / / : am office meeting amanda, david planning / / : pm online email communication david planning / / : pm meeting room volunteer training volunteers data collection / / : am online email communication david planning / / : am online ethics application breb planning / / : pm online email communication marla planning / / : am online email communication david planning / / : am meeting room volunteer training volunteers data collection / / : am online email communication lk planning / / : am online email communication david planning id date time location activity/item type participants code / / : pm online email communication david planning / / : pm online email communication amanda planning / / : pm online email communication marla planning / / : am online email communication amanda planning / / : pm online email communication lk planning / / : pm meeting room volunteer training volunteers data collection / / : am online email communication david planning / / : pm online email communication amanda planning / / : pm meeting room volunteer training volunteers data collection / / : am meeting room volunteer training volunteers data collection / / : am online email communication david planning / / : am online email communication david planning / / : pm online ethics application marla, david planning / / : pm online email communication amanda planning / / : am online email communication marla planning / / : am online email communication david planning / / : pm online email communication david planning / / : pm online email communication amanda planning / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication amanda planning / / : pm online email communication lk planning / / : pm online email communication david planning / / : pm online email communication david planning / / : am online email communication david planning / / : am online email communication mf planning / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication david planning / / : pm online email communication mp planning / / : pm online email communication david planning / / : pm online email communication mp planning / / : am online email communication david planning / / : am online email communication lk planning / / : pm online email communication mp planning / / : pm online email communication david planning / / : am online email communication cn planning / / : pm online ethics application breb planning / / : am online ethics application david planning / / : am bcca volunteer training bcca volunteers, david data collection / / : am online email communication david planning / / : am online ethics application breb planning / / : am online email communication david planning / / : am online email communication lk planning / / : am online email communication amanda planning / / : am online email communication david planning / / : am online email communication lk planning / / : am online email communication david planning / / : am online email communication cnps program planning / / : pm online email communication marla planning / / : am online email communication david planning / / : am bcca volunteering david data collection / / : am bcca volunteering david data collection id date time location activity/item type participants code / / : am online email communication amanda planning / / : pm online email communication david planning / / bcca field notes david reflection / / bcca field notes david reflection / / : am online email communication jm planning / / : am online ethics application david planning / / : pm online ethics application breb planning / / : pm online ethics application david planning / / : pm online email communication david planning / / : pm bcca meeting gm, amanda, david planning / / : am online ethics application breb planning / / : pm online email communication david planning / / : am bcca volunteering david data collection / / bcca field notes david reflection / / : am bcca volunteering david data collection / / bcca field notes david reflection / / : am bcca meeting pfc staff, david planning / / : am bcca volunteering david data collection / / bcca field notes david reflection / / : am bcca volunteering david data collection / / bcca field notes david reflection / / : pm online email communication david planning / / : pm online email communication gm planning / / online email communication david planning / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication gm planning / / : am online email communication bg planning / / : am online email communication david planning / / : am online email communication david planning / / : am bcca volunteering david data collection / / : am online email communication bg planning / / bcca field notes david reflection / / : am online email communication gm planning / / : pm online email communication jb planning / / : pm online email communication cn planning / / : am online email communication david planning / / : am online email communication nb planning / / : am online email communication kj planning / / : am online email communication dr planning / / : am online email communication amanda planning / / : am online email communication david planning / / : am online email communication david planning / / : pm online email communication david planning / / : pm online email communication bb planning / / : pm online email communication david planning / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication kj planning / / : am online email communication david planning / / : pm online email communication amanda planning / / : am bcca volunteering david data collection / / bcca field notes david reflection id date time location activity/item type participants code / / : am online email communication cn planning / / : pm online email communication cn planning / / : am online email communication david planning / / : am online email communication bb planning / / : pm coffee shop interview cn, david data collection / / : pm online email communication david planning / / : am online email communication cn planning / / : pm online course meeting social work, nursing students data collection / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication david planning / / : am bcca volunteering david data collection / / : am online email communication kc planning / / : am online email communication david planning / / : pm bcca meeting nurses, david planning / / : pm online email communication david planning / / bcca field notes david reflection / / : am phone meeting kc, david data collection / / : pm online email communication david planning / / online email communication kc planning / / : am online email communication david planning / / : pm online email communication david planning / / : pm phone phone communication cn, david planning / / : am online email communication david planning / / home journal entry david reflection / / : pm online course meeting social work, nursing students data collection / / article data collection / / : pm online email communication david planning / / : pm online email communication cn planning / / : am park interview cn, david data collection / / park field notes david reflection / / : pm online email communication es planning / / : am online email communication david planning / / : am online email communication es planning / / : pm online course meeting social work, nursing students data collection / / video data collection / / : am bcca volunteering david data collection / / bcca field notes david reflection / / : am online email communication david planning / / : pm online email communication amanda planning / / : pm online course meeting social work, nursing students data collection / / : pm online email communication david planning / / : am online email communication kc planning / / : pm online email communication cn planning / / : am online email communication david planning / / : am online email communication cn planning / / : am online email communication david planning / / : am online email communication cn planning / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication cn planning / / : pm online email communication lc planning / / : pm online email communication jm planning id date time location activity/item type participants code / / : pm online email communication david planning / / : pm online course meeting social work, nursing students data collection / / : pm library interview cn, partner, david data collection / / : am online email communication david planning / / : am online email communication lc planning / / home journal entry david reflection / / : pm online course meeting social work, nursing students data collection / / home journal entry david reflection / / : am bcca volunteering david data collection / / bcca field notes david reflection / / : am online email communication bb planning / / : pm online email communication david planning / / : pm online course meeting social work, nursing students data collection / / : am ubc meeting amanda, marla, david planning / / : am online email communication bb planning / / : am online email communication david planning / / : am online email communication amanda planning / / : am online email communication david planning / / : am online email communication jm planning / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication amanda planning / / : pm online email communication gm planning / / : pm online email communication bb planning / / : pm online email communication amanda planning / / : pm online email communication david planning / / : pm online email communication bb planning / / : pm online course meeting social work, nursing students data collection / / : pm online email communication david planning / / : pm bcca volunteering david data collection / / bcca field notes david reflection / / : am online email communication david planning / / : am online ethics application marla, david planning / / : am online email communication pn planning / / : am online email communication david planning / / : pm online email communication david planning / / : pm online email communication hr planning / / : pm online email communication david planning / / : pm online email communication david planning / / : pm online email communication david planning / / : pm online email communication david planning / / : am online email communication david planning / / : am online email communication ds planning / / : pm online email communication pn planning / / : pm online email communication amanda planning / / : pm online email communication ds planning / / : pm online email communication david planning / / : pm online email communication amanda planning / / : pm online email communication gm planning / / : pm online email communication david planning / / : am online ethics application breb planning / / : am online email communication david planning / / : am online email communication david planning id date time location activity/item type participants code / / : am online email communication marla planning / / : pm online email communication marla planning / / : pm online email communication amanda planning / / : pm online course meeting social work, nursing students planning / / : am online email communication david planning / / : am bcca photograph data collection / / : am bcca volunteering david data collection / / bcca field notes david reflection / / : am online email communication kc planning / / : am online email communication david planning / / : pm online email communication gm planning / / : pm online email communication gm planning / / : pm online email communication david planning / / : pm online email communication david planning / / : pm online email communication david planning / / : am online email communication sk planning / / : am online email communication gm planning / / : am online email communication pn planning / / : am online email communication kc planning / / : pm online email communication marla planning / / : pm online email communication hl planning / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication marla planning / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication lc planning / / : pm online email communication david planning / / : pm online email communication sk planning / / : pm online course meeting social work, nursing students reflection / / : am online email communication david planning / / : am online email communication rw planning / / : am online email communication kc planning / / : pm online email communication david planning / / : am online email communication kc planning / / : pm online email communication sb planning / / : am bcca interview sk, david data collection / / : pm online email communication sk planning / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication pn planning / / : am online email communication pn planning / / : pm online email communication david planning / / : pm online course meeting social work, nursing students data collection / / : pm online email communication david planning / / : pm house room meeting ds, david data collection / / : pm online email communication pn planning / / : am phone interview kc, david data collection / / : pm online email communication david planning / / : am online email communication amanda planning / / : pm online email communication marla planning / / : pm online email communication david planning id date time location activity/item type participants code / / : pm online course meeting social work, nursing students data collection / / : am bcca volunteering david data collection / / bcca field notes david reflection / / : am bcca meeting amanda, david planning / / : am bcca interview pn , david data collection / / : pm online email communication amanda planning / / : pm online email communication sk planning / / : pm online email communication pn planning / / : pm online email communication david planning / / : pm online email communication david planning / / : pm online email communication pn planning / / : am bcca volunteering other bcca volunteers data collection / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication pn planning / / : am online email communication gm planning / / : am online email communication david planning / / : am online email communication david planning / / : pm online email communication gm planning / / : pm online email communication david planning / / : pm online email communication pn planning / / : am online email communication david planning / / : pm online email communication david planning / / : pm online email communication pn planning / / : pm online email communication david planning / / : am online email communication cc planning / / : pm online course meeting social work, nursing students data collection / / : am online email communication david planning / / : am online email communication amanda planning / / : pm online email communication lk planning / / : pm online email communication david planning / / : am online email communication david planning / / : am bcca volunteering david data collection / / : am online email communication amanda planning / / : am online email communication amanda planning / / : am online email communication marla planning / / : am online email communication marla planning / / : pm online email communication ab planning / / : pm online email communication david planning / / bcca field notes david reflection / / : pm online email communication david planning / / : am bcca volunteering david data collection / / bcca field notes david reflection / / : pm bcca volunteering david data collection / / bcca field notes david reflection / / : am bcca interview gm, david data collection / / : pm ubc meeting marla, david planning / / online article wall street journal data collection / / online article wall street journal data collection / / : am online email communication david planning / / : am online email communication david planning / / : am online email communication jm planning / / online podcast cbc radio the next chapter data collection id date time location activity/item type participants code / / : am online email communication jm scheduling / / : am online email communication david scheduling / / : am online email communication david research planning / / : am online email communication david planning / / : pm online email communication david planning / / home journal entry david reflection / / : pm online email communication david planning / / : pm online email communication david planning / / : pm online email communication marla planning / / : pm online email communication marla planning / / : pm online email communication david planning / / radio news cbc radio early edition data collection / / : am home journal entry david reflection / / : am online email communication david planning / / : am online email communication david reflection / / : am home letter david reflection / / radio news cbc radio early edition data collection / / online article wall street journal data collection / / : am online email communication david research planning / / : pm home journal entry david reflection / / online article wall street journal data collection / / home journal entry david reflection / / : am online email communication david planning / / home journal entry david reflection / / home journal entry david reflection / / : pm online email communication david planning / / : pm online email communication david planning / / : am bcca interview lk, david data collection / / : am bus stop journal entry david reflection / / : am ubc conversation lp, david data collection / / home journal entry david reflection / / : am beach photograph data collection / / : pm home journal entry david reflection / / : pm home journal entry david reflection / / : am online email communication david planning / / grant application marla, david planning / / : pm ubc meeting amanda, marla, david planning / / : am online email communication david planning / / seattle conversation attendees, david data collection / / seattle journal entry david reflection / / : pm seattle journal entry david reflection / / : am home journal entry david reflection / / : pm online email communication david planning / / : pm online email communication david planning / / : pm online email communication ak planning / / : am online email communication david planning / / : am online email communication david planning / / : pm online email communication rg planning appendix j appendix k appendix l recruitment brochure appendix m recruitment flyer appendix n initial contact letter appendix o appendix p appendix q appendix r journal entry: waiting location: bus stop / / : am it is a snowy day. cold but not bitterly so. the snow is coming down at a steady pace. as i head for the bus stop, i notice my feet slide with every step. even with my hiking boots, every step is a struggle against inertia. i have to slow down. i have to lower my expectations for how fast i can go. that‟s okay. i have some time today. i am heading to the cancer agency to volunteer and to interview a participant. the latter is scheduled but not for a while yet. i have time. i see a few buses drive by on the main drag as i walk towards the stop. whereas on other days, i‟d feel anxious or disheartened that it might have been my bus, today i feel okay. i patiently approach the stop. another bus is approaching in the distance. my senses become alert, ready to fish out my bus pass from my pocket. the sign gets bigger as it approaches. it is not my bus. i relax, stand down. next one. another two buses approach. the first one is an accordion bus, too big to be mine. the one after is out of service. the next is a . wasn‟t the very first one that passed ? i become suspicious. this is strange. the ‟s can‟t be running twice as frequently as at this time of day. a few more buses approach. none of them is my bus. the snow continues to fall. pass seems like every minutes, twice two in a row. with every passing bus that is marked “out of service” or is not mine, i feel more and more disappointed and frustrated. it seems that every second one is out of service. “sorry” and “out of service” the sign would alternate. “sorry”. “sorry, sorry.” stop your apologizing, i want to lash out in anger. just do something to change it. early on, each coming bus brings with it a wave of hope. with each passing bus, the hope diminishes, becoming more and more jaded to it. i try to endure, to remain hopeful, to keep my spirits high. but one can only maintain hope for so long. a number of people arrive at the bus stop and board, heading on their way. i feel demoralized, distressed that i am being left behind, that they are leaving me behind, that life is leaving me behind. i am tempted to hop onto the next bus, any bus, just to get somewhere. i feel uneasy, impatient with this stagnation in my life. a sudden thought occurs to me. what if i don‟t ever get on a bus?! i begin to panic. my heart beats faster, louder. i feel it inside my chest, my rib cages hardly able to contain its panic. what if i don‟t ever get on a bus… there must be a mistake, i try to assure myself. the bus driver forgot to switch their sign. a number of other scenarios enter my mind. an accident along the route. a cancellation of the service. something, anything to explain these circumstances as being about somebody else; not about me, that i did something wrong, that fate was upset with me. the snow continues to fall, more heavily it seems. either that or my feelings are getting the better of me, accentuating the experience of reality. weather accentuated by my feelings or not, it‟s getting colder. that‟s real for sure. just from standing out here for so long, anybody would get colder. what were snowflakes have turned into drops of water on my jacket. ice into water, solid into liquid, a process that requires energy. “in any isolated system, the total energy remains the same.” first law of thermodynamics. energy, my energy. my god, the snow is stealing my energy! anger, resentment. i despise the snow. i try to calm down, to find some peace, some acceptance in these crazy circumstances. i jam my head a little closer towards the ceiling of the umbrella canvas to protect myself from the snow, as much protection as this pathetic little umbrella can afford me. i need more than an umbrella. i need warmth, a house, a fireplace, a hot cup of water to warm my hands. as i wait in silence, my senses attune to the constant crackle of snowflakes as they land on the canvas next to my ears. it‟s like i‟m inside a drum, trapped, with nothing but the reverberations of each strike of the surface to occupy me. with nothing else, i focus on the sounds. there is an occasional thuds as a particularly large clump strikes the canvas. i‟m stunned by the loudness. i reflect on how snow is supposed to be silent and yet in this state of existence, i perceive their fall. in this state of trapped-ness, the crackles and thuds is relieving. it feels calming, peaceful. “you‟re just distracting yourself,” says a little voice inside. “nothing has changed.” “yeah, but i like it,” another responds with gentle reverence. “i just want to stay distracted for a while.” i notice a twinkle in my right hand. it‟s clutching the umbrella handle, exposed to the elements. i wish i could shelter it as well but it‟s what‟s keeping the rest of me protected, or at least as much as my measly little umbrella is able. beginning to feel the biting pain of the cold, my hand being at that transitional state after the point of comfort but before losing all sensation. it's that transitional state that is figuratively and literally the most painful to exist in. strikes me, such parallels with the experience of cancer. my spirit weakens under the weight of each passing bus. consider leaving to pick up the at the main loop several tines but afraid that it may come just as i leave, being left more disappointed by my own doing. so i remain there, foreclosing on any decision-making, even though that is a decision in itself. after minutes, my bus finally appears. i stare down the flashing lights, unwilling to believe it at first. to believe it is to be set up for disappointment. but this time it is, for sure. a relief like no other i have ever experienced spreads through my entire body. i turn towards the stop to indicate my desire to board it, to seek its refuge, to continue on my journey. but something strange happens. the engine continues to roar, no indication of slowing down. it is only meters away. it has to stop now or else it won't be able to, it's momentum too great. a shock of terror rush through me, they are going to drive right by, my lifeline slipping through my desolate fingertips. i stick both arms out desperately to get attention. in fact it speeds up. i see my hope driving away. ignoring my silent cries. i cry out in rage, then in anguish, then in destitute. no one responds. i feel like i want to cry out in frustration, in anguish. actually, i just want to cry. i‟ve arrived at the . there are others waiting, some silently, others, talking with the people next to them. there is an occasional laugh. i revile such levity. i feel outraged that the world doesn't appreciate this abomination, this injustice. life continues on, completely unaware of the injustice that has be done to me. 	abstract 	preface 	table of contents 	list of images 	acknowledgements 	dedication 	chapter : introduction 	 . journey beginnings 	 . thesis overview 	 . research question 	 . deconstructing culture and the self 	chapter : methodology 	 . orienting worldview 	 . auto/ethno/graphic inquiry 	 . . rationale for adopting a qualitative ethnographic approach. 	 . . rationale for autoethnography. 	 . . situating myself. 	 . collecting data 	 . . roles. 	 . . methods and sources of data collection. 	 . data analysis 	 . . questions for reflexive analysis. 	chapter : stories 	 . directions emerging 	 . . arriving. 	 . . strangers meeting. 	 . . adrift. 	 . . connections. 	 . . where do i belong? 	 . . bearing it. 	 . . deep sleep. 	 . . misunderstandings. 	 . . bear bear. 	 . . auld lang syne. 	 . . evolving questions. 	 . . hope renewed and yet hope lost. 	 . . turning inward. 	 . roles, masks and this divide between us 	 . . handling others with care. 	 . . my critical voice. 	 . . drifting apart. 	 . . struggling to find the balance. 	 . . our cultural context and the divide between us. 	 . . language divides. 	 . . perceptions that divide. 	 . . finding clarity amidst confusion. 	 . . practice dying. 	 . . summary. 	 . deconstructing the health care provider 	 . . who are health care providers? 	 . . burdens on care providers. 	 . . volunteers as care providers. 	 . . a willingness to respond. 	 . . the many faces of care providing. 	 . . summary. 	 . conversations with nímāmā 	 . . juxtaposition of our two realities. 	 . . failing you. 	 . . protecting each other. 	 . . trying something different. 	 . . protecting ourselves. 	 . . someone who is simply present. 	 . . courage and strength. 	 . . your gift of pain. 	chapter : conclusion 	 . implications for my research directions 	 . implications for my practice 	 . implications for social policy 	 . finally 	references 	appendices 	appendix a 	appendix b 	appendix c 	appendix d 	appendix e 	appendix f 	appendix g 	appendix h 	appendix i 	appendix j 	appendix k 	appendix l 	appendix m 	appendix n 	appendix o 	appendix p 	appendix q 	appendix r veterinary record - wiley online library 	skip to main content working off-campus? learn about our remote access options carnegie mellon university carnegie mellon university search withinthis journal all bva journals wiley online library 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copyright © british veterinary association british veterinary association is registered in england no at mansfield street, london, w g nq. vat registration number gb copyright © british veterinary association additional links about wiley online library 	privacy policy 	terms of use 	cookies 	accessibility help & support 	contact us 	dmca & reporting piracy opportunities 	subscription agents 	advertisers & corporate partners connect with wiley 	the wiley network 	wiley press room copyright © - john wiley & sons, inc. all rights reserved log in to wiley online library email or customer id password forgot password? bva members log in here log in with bva     new user > institutional login > change password old password new password too short weak medium strong very strong too long password changed successfully your password has been changed create a new account email or customer id returning user forgot your password? enter your email address below. email or customer id please check your email for instructions on resetting your password. if you do not receive an email within minutes, your email address may not be registered, and you may need to create a new wiley online library account. request username can't sign in? forgot your username? enter your email address below and we will send you your username email or customer id close if the address matches an existing account you will receive an email with instructions to retrieve your username one pair of hands is not like another: caudate bold response in dogs depends on signal source and canine temperament submitted july accepted september published september corresponding author gregory s. berns, gberns@emory.edu academic editor giorgio vallortigara additional information and declarations can be found on page doi . /peerj. copyright cook et al. distributed under creative commons cc-by . open access one pair of hands is not like another: caudate bold response in dogs depends on signal source and canine temperament peter f. cook , mark spivak and gregory s. berns economics department & center for neuropolicy, emory university, atlanta, ga, usa comprehensive pet therapy, sandy springs, ga, usa abstract having previously used functional mri to map the response to a reward signal in the ventral caudate in awake unrestrained dogs, here we examined the importance of signal source to canine caudate activation. hand signals representing either incipient reward or no reward were presented by a familiar human (each dog’s respective handler), an unfamiliar human, and via illustrated images of hands on a computer screen to dogs undergoing voluntary fmri. all dogs had received extensive training with the reward and no-reward signals from their handlers and with the computer images and had minimal exposure to the signals from strangers. all dogs showed differentially higher bold response in the ventral caudate to the reward versus no reward signals, and there was a robust effect at the group level. further, differential response to the signal source had a highly significant interaction with a dog’s general aggressivity as measured by the c-barq canine personality assessment. dogs with greater aggressivity showed a higher differential response to the reward signal versus no-reward signal presented by the unfamiliar human and computer, while dogs with lower aggressivity showed a higher differential response to the reward signal versus no-reward signal from their handler. this suggests that specific facets of canine temperament bear more strongly on the perceived reward value of relevant communication signals than does reinforcement history, as each of the dogs were reinforced similarly for each signal, regardless of the source (familiar human, unfamiliar human, or computer). a group-level psychophysiological interaction (ppi) connectivity analysis showed increased functional coupling between the caudate and a region of cortex associated with visual discrimination and learning on reward versus no-reward trials. our findings emphasize the sensitivity of the domestic dog to human social interaction, and may have other implications and applications pertinent to the training and assessment of working and pet dogs. subjects animal behavior, neuroscience, veterinary medicine keywords fmri, canine cognition, animal temperament, caudate, neuroimaging, comparative neuroscience, reward systems introduction the domestic dog is a rising star in behavioral neuroscience due both to his high trainability and likely co-evolution with humans over the last , – , years. recently, dogs have even proved amenable to participation in awake, unrestrained how to cite this article cook et al. ( ), one pair of hands is not like another: caudate bold response in dogs depends on signal source and canine temperament. peerj :e ; doi . /peerj. mailto:gberns@emory.edu https://peerj.com/academic-boards/editors/ https://peerj.com/academic-boards/editors/ http://dx.doi.org/ . /peerj. http://dx.doi.org/ . /peerj. http://creativecommons.org/licenses/by/ . / http://creativecommons.org/licenses/by/ . / https://peerj.com http://dx.doi.org/ . /peerj. neuroimaging, allowing researchers to further probe the workings of the canine mind in a non-invasive and ethical method (berns, brooks & spivak, ). the picture that is emerging suggests dogs are highly sensitive to social context and cues, both from other dogs and from humans. unsurprisingly for a highly social species, dogs use an extensive and nuanced vocabulary of cues in both affiliative and antagonistic interactions with conspecifics (bradshaw & nott, ; quaranta, siniscalchi & vallortigara, ; horowitz, ; siniscalchi et al., ); they are perhaps more unique in their apparent interspecies sociality (siniscalchi et al., ), showing sensitivity to human cues as well. it has even been suggested that dogs might serve as better comparative models for human cognition than non-human apes (topal et al., ). they can perform fast mapping of novel words (kaminski, call & fischer, ), and appear to have brain regions specialized for processing the human voice (andics et al., ). behavioral work shows that dogs can read naturalistic signals from humans that may be difficult for other species (hare & tomasello, ; teglas et al., ; gácsi et al., ) (although see udell, dorey & wynne, ). prior fmri research in our lab has shown that the ventral caudate nucleus—a brain region known to be specialized for reward prediction and processing of positively valenced stimuli across species (schultz, tremblay & hollerman, ; montague & berns, ; humphries & prescott, ; daw et al., )—is differentially active in dogs in response to the scent of familiar humans versus familiar dogs and unfamiliar humans (berns, brooks & spivak, in press). in line with behavioral evidence (miklosi & topal, ), this suggests that, in a real sense, dogs may prefer the company of familiar humans over the company of either familiar or unfamiliar dogs. while the amassing data are suggestive of specialized social sensitivity in the dog, the question remains to what extent simple conditioning and reinforcement history, as opposed to social specialization, can explain previous findings. to address one aspect of this question, we iterated on and expanded our earlier fmri work with dogs. having previously shown a replicable but heterogeneous ventral caudate response in dogs to signals from their handlers predicting either incipient food reward or no reward (berns, brooks & spivak, ; berns, brooks & spivak, ), here we used fmri to examine neural responses to these same signals presented by a familiar human and an unfamiliar human and to analogous but illustrated hand signals projected on a screen (referred to forthwith as “computer” signals). although the subject dogs had an extensive reinforcement history with the human and computer signals, we hypothesized that differential caudate bold response in the reward versus no-reward condition—taken here to be indicative of strength of reward prediction—would be highest with the familiar human source, and lowest with the computer, in line with the possibility that social bond, and not just food-specific reinforcement history, affects the valence of familiar cues. there is growing evidence to suggest that human–dog social bonds are durable and complex, showing much of the same nuance as those of human–human social bonds (e.g., prato-previde et al., ; siniscalchi, stipo & quaranta, ). it is possible then that the source of a signal might indeed have a profound effect on how it is received and processed by a dog. cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. table participants. name breed sex age service training callie feist female-spayed n caylin border collie female-spayed n jack golden retriever male-neutered n kady yellow lab female-spayed y libby vizsla pit mix female-spayed n nelson cairn terrier mix male-neutered n ohana golden retriever female-spayed y pearl golden retriever female-spayed y stella bouvier female-spayed n tigger boston terrier male-neutered n velcro vizsla male-intact n zen yellow lab male-neutered y to examine possible effects of temperament on conditional neural response, we also collected cbarq questionnaires (a validated method for quantifying dog temperament duffy & serpell, ) from each dog’s primary handler. finally, we conducted an exploratory psychophysiological interaction (ppi) analysis on the bold data. ppi is a connectivity measure that allows one to examine what brain areas increase functional connectivity (i.e., synchronous fluctuations of brain activity biswal et al., ) with a seed region on a task or condition-specific basis. while typical bold contrasts used in fmri tend to highlight regions maximally specific to the task or condition of interest, ppi can highlight more distributed network activity involving areas less specialized to the primary task (friston et al., ; rogers et al., ). ppi generally requires large numbers of events, so we collapsed across all source conditions (familiar human, unfamiliar human, and computer) and looked for areas with increased functional connectivity to the ventral caudate in the reward vs. no-reward conditions. this opens the possibility of uncovering task-specific reward networks across the canine brain. materials and methods participants participants were dogs (n = ) from the atlanta community (table ). all were pets and/or released service dogs whose owners volunteer their time for fmri training and experiments. all had previously completed an fmri session in which two hand signals were presented by their primary trainer, one indicating forthcoming food reward, the other indicating no reward. accordingly, all dogs had demonstrated an ability to remain still during training and scanning for periods of s or greater. however, one dog exhibited excessive motion during this experiment and was subsequently excluded from analysis because of insufficient observations after motion censoring (see below). cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. figure the computer reward (a) and no-reward (b) signals. this study was performed in strict accordance with the recommendations in the guide for the care and use of laboratory animals of the national institutes of health. the study was approved by the emory university iacuc (protocol #dar- - ba), and all dogs’ owners gave written consent for participation in the study. training for participation in previous experiments (details in: berns, brooks & spivak, ; berns, brooks & spivak, in press), dogs took part in a training program using behavior shaping, desensitization, habituation, and behavior chaining to prepare them to be comfortable with the physical confines of the mri bore and the loud noise produced by scanning. the end goal of initial training was that each dog remain comfortable and motionless for up to s at a time during live scanning. in the current experiment, dogs received reward and no reward signals from a familiar human (their primary experimental trainer), an unfamiliar human, and from computer-generated stimuli on a projection screen. as mentioned above, each dog in this experiment was highly trained on two hand signals, an upright raised left hand signifying reward, and both hands held sideways and inward-pointing, with the back of each hand toward the dog, signifying no reward (as described in berns, brooks & spivak, ). no further training for these signals was required. the current experiment involved two new experimental stimuli: computer-generated images to be presented on a projection screen. these were to serve the same signaling function as the previously learned hand signals (reward and no-reward). the computer reward signal consisted of an illustrated image of a raised hand, oriented so it would appear as a raised left hand facing the dog. the computer no-reward signal consisted of two illustrated inward pointing hands with thumbs up, oriented to appear as if the backs of the hands were facing the dog (fig. ). for maximum discriminability, the two signals were presented on black backgrounds, and each at one of the wavelengths to which dogs are most sensitive (neitz, geist & jacobs, ), a yellow–green for the reward signal ( nm), and a medium blue ( nm) for the no-reward signal. wavelengths were converted rgb values (http://rohanhill.com/ cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://dx.doi.org/ . /peerj. tools/wavetorgb/). because we were not making predictions about visual processing, but rather wanted two stimuli that were maximally discriminable, we did not attempt to normalize the contrast and luminance of the two computer stimuli. training for the current experiment involved biweekly instruction at our training facility overseen by core project staff and regular training at home overseen by each dogs’ primary experimental trainer. dogs were trained to associate the green raised hand signal with reward and the sideways blue hand signal with no reward via the same method previously employed to teach them the human hand signals (berns, brooks & spivak, ). during training sessions, each dog cooperatively stationed him- or herself in a custom-made foam chinrest placed inside of a mock mri coil. presentation of signals was contingent on the dog’s being able to station calmly and with minimal motion. the signals were displayed on a laptop screen placed approximately inches in front of the dog, and were presented in short (< trials) sessions. presentation order was semi-randomized (each signal was presented no more than times consecutively, and reward to no-reward ratio was between : and : , with the reward signal becoming less frequent once each dog became comfortable and experienced with the protocol). if the dog was able to hold still for the duration of the green reward hand signal, a food reward was dispensed immediately after. following the blue sideways hand signal, no reward was dispensed. if the dog left the station during either signal, the stimulus was turned off, and the handler waited until the dog returned, at which point they presented the same stimulus again. association learning with the two computer stimuli was conducted over multiple sessions and for an amount of time comparable to initial training with the human hand signals (approximately month). when dogs were accustomed to viewing the computer signals, further training was conducted at our training facility. first, dogs were acclimated to a new food-delivery system (dubbed the “treat-kabob”). this was necessary because, while previously food reward had been delivered directly by hand, in the current experiment the projection screen required for presentation of the computer stimuli made this difficult. furthermore, we wished to evaluate only the context variability of the signals. therefore, we needed to keep the food delivery methodology constant across the three signal source states. two variants of the food-delivery system were used—one in which a long wooden dowel with a small treat placed on a dull skewer at the end was slid up a pvc pipe and presented to the dog, and another in which the same dowel was used to bring the treat to the dog’s mouth without the pvc guide tube (the specific delivery method was adjusted for the dog’s comfort). in both cases, dogs were first exposed to the treat kabob in their chin stations on the ground until it was determined they were not nervous and were competent at removing the treats from the skewer. training was then transitioned into the mock mri scanner (fig. a, see berns, brooks & spivak, ). in – sessions with each dog’s primary experimental trainer presenting the familiar reward and no-reward hand signals, food reward was delivered via the treat kabob by a project staff member sitting below and to the side of the bore. each dog also received one or two sessions with an unfamiliar human delivering the reward and no-reward hand signals, to assess their willingness to cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://rohanhill.com/tools/wavetorgb/ http://dx.doi.org/ . /peerj. figure (a) participant kady stationed in the mock scanner with the treat kabob. (b) participant zen stationed in the mri bore, facing the projection screen (and wearing ear protection). remain stationary in the presence of an unfamiliar human. note that the human used in this behavioral assessment was different than the unfamiliar human who delivered signals at testing. when dogs were judged comfortable with this setup, training commenced for acclimation to a screen being placed in the bore. a computer monitor was placed at the end of the bore, directly in front of the dog’s chin station, to simulate the projection screen used cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. in live scanning. these training sessions were aimed at making the dogs comfortable with stationing in the bore with a visual barrier in front of them. we did not have a strict behavioral metric to determine when this training was complete—rather a practical measure was used. dogs were cleared for testing when they had completed at least one month of regular practice and were able to do an extended “dress rehearsal” session in the mock scanner without showing anxiety or escape behavior. this session involved stationing with the monitor in place, recorded scanner noise playing, and the primary handler out of view. dogs also had to be wearing their ear protection, and treats were delivered via the treat kabob. total time in training, from first introduction to the computer stimuli to finishing “dress rehearsal” ranged from weeks to weeks, with the duration affected by both the aptitude of the dog and the diligence of the owner in implementing homework sessions. mri scanning all scanning for the current experiment was conducted with a siemens t trio whole-body scanner. dogs were stationed in their custom chin-rests, which had been placed in a standard neck coil as previously described in berns, brooks & spivak ( ) (fig. b). all participants wore ear protection during scanning, either mutt muffstm or ear plugs with wrap, depending on dog and owner preference. each scan session began with a s, single image localizer in the sagittal plane (spgr sequence, slice thickness = mm, tr = . ms, te = . ms, flip angle = ◦, × matrix, fov = mm). a t -weighted structural image was previously acquired during one of our earlier experiments using a turbo spin-echo sequence ( – mm slices, tr = , ms, te = . ms, flip angle = ◦, echo trains, × matrix, fov = mm), which lasted ∼ s. functional scans used a single-shot echo-planar imaging (epi) sequence to acquire volumes of sequential mm slices with a % gap (te = ms, tr = , ms, flip angle = ◦, × matrix, mm in-plane voxel size, fov = mm). slices were oriented dorsally to the dog’s brain (coronal to the magnet, as, in the sphinx position, the dogs’ heads were positioned ◦ from the usual human orientation) with the phase-encoding direction right-to-left. sequential slices were used to minimize between-plane offsets from participant movement, and the % slice gap minimized the crosstalk that can occur with sequential scan sequences. six runs of up to functional volumes were acquired, each lasting approximately min. for the first dog (zen), three runs of up to functional volumes were acquired, each lasting approximately min. this was subsequently split into runs in a counterbalanced fashion for the remainder of the dogs. as part of a separate experiment, an additional functional run was acquired during the session in which the dog was presented with different types of visual stimuli on the screen; however, these data are not analyzed or reported here. cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. during functional scanning, reward was delivered via the aforementioned treat-kabob, operated by a project staff member sitting below and to the side of the scanner bore (out of sight of the dog). experimental design stimuli for this experiment were as described above: the two natural hand signals representing reward and no-reward delivered by a familiar and an unfamiliar human, and the two illustrated computer signals representing reward and no-reward, projected on a screen at the head of the bore. each subject dog received reward and no-reward signals with the familiar human, the unfamiliar human, and with the computer images, for trials overall across the three source conditions. each stimulus was presented for approximately s, regardless of source. these trials were broken into six runs of trials each. an event-based design was used, with reward and no-reward trials presented semi-randomly within each run (either reward trial and no-reward trials or vice versa, and with no more than three of either stimulus type presented consecutively). the six runs for each dog were always in the same order: familiar human, unfamiliar human, computer, computer, unfamiliar human, familiar human (as part of a different experiment, an additional run was included in the middle of this sequence in which different visual stimuli were presented on the computer screen and are analyzed and reported elsewhere). low sample size didn’t allow for different counterbalancing across participants or randomizing order, and running each source condition on a separate day to avoid effects from in-session habituation was not practical. this abccba pattern of presentation controlled, at least partially, for effects in the bold signal from habituation, sensitization, and scanner drift becoming confounded with signal source. in addition, we determined that placing the computer runs first or last might be difficult for some dogs—in practice we had observed that dogs tended to move more and show more signs of anxiety when receiving computer signals as opposed to receiving signals directly from their handlers. by placing the computer signals in the middle of the experimental sequence, each dog had a chance to “warm up” to the task with the more familiar source conditions before the computer runs, but also had the more familiar (potentially easier) source conditions at the end of the experimental sequence, when stress and fatigue may have made them less inclined to continue participating. the first dog’s trials were broken instead into three runs of trials each ( reward and no-reward), in the following order: familiar, unfamiliar, computer. thus, he received the same amount of total trials and trials for each condition as the other dogs, but without the pyramidal order provided the other dogs. behavioral criteria during testing for all dogs were the same as during training—each dog was required to hold still for the duration of each signal. following a reward signal, they received a small piece of hot-dog via the treat-kabob. no reward was given following a no-reward signal. following each -trial run, the dog was taken out of the scanner and allowed to walk around, drink water, etc. cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. for live scanning, some dogs did show some anxiety when first placed in the bore with the projection screen in place and their handler out of sight. basic training mechanisms were employed to work around this, reprising the initial acclimation approach taken in the mock scanner at our training facility discussed previously. in brief, prior to the beginning of these scanner runs, the dogs were stationed with the screen present and their owner’s face in view. they were rewarded a number of times as the owner was approximated back and to the side, and then live scanning began. event recording trial events (onset and offset of reward and no-reward signals) were recorded by an observer via a four-button mri-compatible button-box. the observer stood next to the experimental trainer and unfamiliar person respectively on runs , , , and , such that they could see the dog’s head in the bore of the magnet. on these runs, the observer signaled the experimental trainer and unfamiliar person when to present which signal. on runs and , the computer runs, the observer moved to the side so that the dog was unable to see them, but the they could just see the very tip of the dog’s nose (to ascertain that the dog was still appropriately stationed/not moving). on the computer runs, the observer used the button-box to present and advance the reward and no-reward stimuli (while simultaneously recording onset/offset). a laptop computer running matlab (mathworks) and cogent (fil, university college london) was connected to the button-box via serial port, and recorded both the button-box responses by the observer and scanner sequence pulses. c-barq because we hypothesized that variability in participant disposition toward handlers and strangers could have a strong impact on the relative reward value of the two signal types across different source conditions the dogs’ handlers completed the canine behavioral assessment & research questionnaires (c-barq). these have been used on over , dogs and represent a standardized and validated (duffy & serpell, ) tool for obtaining behavioral measures from owner report. the c-barq consists of questions asking the respondent to report on how the dog typically responds to common events. scores between (minimum) and (maximum) are then computed for behavioral categories. because of the small number of dogs relative to the number of c-barq factors, there was a high potential for factors to be correlated with each other. this collinearity, combined with the number of factors, would be problematic in any modeling of the neural data. therefore, we performed principal component analysis (pca) on the c-barq scores from our subjects, with a limit of four factors. by limiting to four factors, we were able to include these factors in the neural model without overfitting, while still being able to identify the major groupings of c-barq dimensions that were responsible for differences in neural activation. cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. functional data preprocessing and analysis preprocessing was conducted using afni (nih) and its associated functions, and most steps were identical to those listed in berns, brooks & spivak (in press). in brief, -pass, -parameter affine motion correction was used with a hand-selected reference volume for each dog. because dogs moved between trials (and when rewarded), aggressive censoring was carried out, relying on a combination of outlier voxels in terms of signal intensity and estimated motion. censored files were inspected visually to be certain that bad volumes (e.g., when the dog’s head was out of the scanner) were not included. the majority of censored volumes followed the consumption of food. on average, % of total epi volumes were retained for each subject (ranging from % to %). this was in line with previous experiments using reward and no-reward signals (berns, brooks & spivak, ; berns, brooks & spivak, in press). in addition, we computed the scan-to-scan movement from the afni motion files in all three principal directions during exposure to each source (handler, stranger, computer) and condition (reward and no-reward) for each dog for all volumes, including those subsequently censored. scan-to-scan movement was computed as: sqrt(dx i + dy i + dz i ) where dxi, dyi, and dzi are the changes in corresponding head position of the ith volume (e.g., dxi = xi − xi− ). scan-to-scan movements greater than mm occurred occasionally if a dog moved out of the field of view. in these cases, the motion estimates were not reliable and so these values were capped at mm to avoid biasing the average. we also computed the proportion of censored volumes during exposure to each source and condition. this allowed us to determine whether unbalanced motion parameters or censoring between reward and no-reward conditions might introduce strong bias into our bold findings. epi images were smoothed and normalized to %-signal change. smoothing was applied using dmerge, with a mm kernel at full-width half-maximum (fwhm). the resulting images were then input into the general linear model. for each subject, a general linear model was estimated for each voxel using ddecon- volve. the task-related regressors in this model were: ( ) familiar human reward signal, ( ) familiar human no-reward signal, ( ) unfamiliar human reward signal, ( ) unfamiliar human no-reward signal, ( ) computer reward signal, and ( ) computer no-reward signal. because our previous work measuring the hemodynamic response function (hrf ) in dogs on this task revealed a peak response at – s after signal onset (berns, brooks & spivak, ), the six task regressors were modeled as impulse functions. events were convolved with a single gamma function approximating the hrf. motion regressors generated by the motion correction were also included in the model to further control for motion effects. a constant and linear drift term was included for each run. finally, to control for possibly confounding physiological factors (e.g., if the reward condition led to more rapid breathing, which might boost neural bold signal), a spherical roi ( mm radius) was drawn manually on each dog’s structural image in the posterior ventricle, just posterior to the splenium of the corpus callosum. using afni’s dmaskave, average timecourses for these rois were then extracted after transforming to each dog’s structural space. this timecourse was entered into the general model as a nuisance variable for each subject. cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. figure the right caudate seed, anatomically defined, used for participant kady, in the transverse (a) and coronal (b) planes. because bold signal changes in csf and white matter reflect physiological effects, not neural processing, this controlled for undue influence of physiological effects on the primary contrasts (weissenbacher et al., ; murphy, birn & bandettini, ). rois and mixed-effects modeling to measure the interaction of reward and no-reward signals with signal source, we used a mixed-effects anova to compare mean caudate activation in the six conditions ( signals × sources) across all dogs. the four primary temperament factors (as computed from the cbarq behavioral questionnaire and subsequent pca discussed above) were also included in the statistical model. to ensure that we were, in fact, measuring caudate activity, we used anatomically defined rois. a left and right roi was drawn on each dog’s structural image (fig. ). then, these rois were used to extract average beta values for each dog in each condition from the first-level glms, after transforming to each dog’s structural space. the end result was values for each dog (the conditions for both left and right caudates). cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. analysis was conducted using the mixed models procedure in spss v (ibm). a × anova was formulated with fixed effects for hand signal (reward, no reward) and source (familiar, unfamiliar, computer) with dog as a random effect. because no significant left/right differences were observed, side was not included as a fixed effect. we also conducted a second analysis that included the c-barq temperament factors as well their interactions with the other fixed effects. this allowed us to determine the relative caudate activation in each of the six conditions and examine how this might be modulated by temperament. ppi in addition, we used our data to compute a psychophysiological interaction (ppi) analysis at the individual and group levels. ppi highlights areas that increase functional coupling (defined as synchronous firing patterns) with a seed area in a certain condition, or in a certain condition in contrast to some other (friston et al., ), and has been shown to produce reliable and robust measures of task-specific functional connectivity (kim & hortwitz, ). ppi allows one to determine which brain areas increase functional connectivity with an area of interest during processing of a specific task. we computed our ppi in afni as described in http://afni.nimh.nih.gov/sscc/gangc/ cd-corrana.html. first, functionally localized, bilateral caudate seeds were generated for each dog from the allrew–allnorew contrast (that is, across all three source conditions: familiar, unfamiliar, and computer). for each animal, the seeds were generated as spheres with a mm radius centered on the voxel with the greatest differential activation in the left and right caudate respectively. the activation time series for the left and right caudate seeds were extracted for each subject using dmaskave. the time series were then deconvolved using ddetrend using a basic gamma function. next, the interaction of the condition times (reward, no reward, and neutral baseline) and the deconvolved caudate seed time series was computed to produce an interaction term. the interaction term was convolved using the afni waver command with a basic gamma function. the convolved interaction term and the initial extracted caudate seed time series were then entered as regressors into the initial glm (along with the primary task regressors, drift terms, motion regressors), and physiological regressor). increased bold activation corresponding to the interaction term in the glm should then be seen in areas that increased functional coupling (i.e., synchronous firing) with the caudate during reward versus no-reward conditions. such areas may be understood to be differentially connected to the caudate during processing of the reward signal in this task. note that, as a connectivity analysis, ppi is driven by patterns of increase and decrease in bold signal, and is not necessarily indicative of a main effect difference in bold strength in any particular region. whole-brain group analyses to apply the transformations to a statistical contrast, the appropriate individual-level contrast (obtained from the glm as described above) was extracted from the afni brik cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://afni.nimh.nih.gov/sscc/gangc/cd-corrana.html http://dx.doi.org/ . /peerj. file and normalized to template space. group normalization was conducted using the advanced normalization tools (ants) software, as described in berns, brooks & spivak (in press). briefly, three spatial transformations were computed for each dog: ( ) rigid-body mean epi to high-resolution structural ( dof ); ( ) affine structural to template ( dof ); and ( ) diffeomorphic structural to template. spatial transformations were then concatenated and applied to individual contrasts obtained from the above-described glm model. this allowed the computation of group level statistics. for group-level statistics, a high-resolution mri beagle brain atlas was used as the template (datta et al., ). afni’s dttest++ was then used to compute a t-test across dogs with the null hypothesis that each voxel had a mean value of zero. all twelve dogs were used in this group analysis. the group contrast we conducted was reward—no reward (across all source conditions), computed as the contrast [(rewfam + rewunf + rewcom)] − [(norewfam + norewunf + norewcom)]. the same approach was taken to compute the group ppi results. instead of a contrast, the beta values for the interaction term (computed between stimulus presentation schedule and caudate time series) from each individual dog were entered into a second-level model using dttest++. for both the primary glm and the ppi analysis, we then calculated the average smoothness of the residuals using dfwhmx and then used dclustsim to estimate the significance of different cluster sizes across the whole brain after correcting for familywise error (fwe). results mean scan-to-scan movement across all sources (familiar and unfamiliar human and computer) and signals (reward and no-reward) was . mm. in a repeated measures anova, source was a significant predictor of motion (f( ) = . , p < . ), with motion lower in the familiar handler source than the other two. signal, however, was not a significant predictor of motion (f( ) = . , p = . ), nor was the interaction of source and signal (f( ) = . , p = . ). this paralleled the findings from a repeated measures anova examining the percentage of volumes censored across all source and signal conditions. in the latter, source was a significant predictor of censoring (f( ) = . , p < . ), while signal was not (f( ) = . , p = . ), nor was the interaction of source and signal (f( ) = . , p = . ). whole-brain group analysis of (reward–no-reward) hand signals collapsed across all three source conditions (familiar human, unfamiliar human, and computer) yielded robust and significant bilateral ventral caudate activation. with a single-voxel significance of . , the cluster, which corrected fwe across the whole brain, was p = . (fig. ). in the four-factor pca of the temperament factors from the c-barq questionnaire (table ), the first factor accounted for . % of variance, the second for . %, the third for . % and the fourth for . % of variance (accounting cumulatively for . % of total variance). of note, the first factor appeared to strongly represent aggressivity, while the second was associated with attachment and separation. in the mixed-effects anova model without temperament included, the interaction of source and signal was not a significant predictor of caudate activation (f( , . ) = . , cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. figure whole-brain group analysis of response to all reward–no-reward conditions. an unthresh- olded transverse slice (a) and coronal slice (b) are shown, as is a coronal slice thresholded at . (c). color indicates t-statistic at each voxel against the null hypothesis of equal activity to reward and no-reward conditions. significantly greater activity was observed in the reward versus no-reward condition. table weighting of c-barq pca factors. temperament component component component component stranger-directed aggression . . −. −. owner-directed aggression . −. −. . dog-directed aggression . −. . −. dog-directed fear . −. . . familiar-dog aggression . −. . . trainability −. . . −. chasing . . . . stranger-directed fear −. . . . nonsocial fear . −. . −. separation-related problems . . . −. touch sensitivity . . −. . excitability . . . −. attachment/attention seeking . . . −. energy −. . . . p = . ). however, in the mixed-effects anova model with the four temperament factors included, signal was a significant predictor (f( , . ) = . , p < . ), the interaction of source and signal was a significant predictor (f( , . ) = . , p < . ), the interaction of source and c-barq factor was a significant predictor (f( , . ) = . , p < . ), the interaction of source with signal and c-barq factor was a significant predictor (f( , . ) = . , p < . ), the interaction of source with c-barq factor cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. was a significant predictor (f( , . ) = . , p < . ), the interaction of source with c-barq factor was a significant predictor (f( , . ) = . , p = . ), and the interaction between source, signal, and c-barq factor was a significant predictor (f( , . ) = . , p < . ). neither c-barq factor , nor any of its interactions, were significant predictors of caudate activation. for further analysis we focused on c-barq factor . c-barq factor did not show a significant interaction with signal, and c-barq factor was dominated by the trainability metric from the c-barq questionnaire. the values for our dogs showed very limited range in this metric, and did not match with independent assessments of actual trainability by the authors (two of whom have extensive animal training experience) (fig. ). functional connectivity group analysis revealed bilateral clusters of increased activation, in the left posterior suprasylvian region corresponding to the right caudate seed, and in the right posterior suprasylvian region corresponding to the left caudate seed (fig. ). both clusters were significant at voxelwise p < . ( voxels for the left posterior suprasylvian region, voxels for the right posterior suprasylvian region), but do not survive thresholding with whole-brain corrected fwe at p < . . discussion here we showed that, across dogs, the caudate was differentially active for reward vs. no-reward signals when analyzed at the group level. findings controlled for confounding effects from motion, censoring, and physiological changes. this builds on our previous findings showing differential caudate activation for a similar task at the individual subject level (berns, brooks & spivak, ; berns, brooks & spivak, ). given this robust group finding, and the extensive literature linking caudate activation to reward anticipation (montague & berns, ; schultz, dayan & montague, ; knutson et al., ), the current experiment provides the most definitive evidence to date that fmri with unrestrained, awake dogs can yield reliable and valid data. moreover, the current results emphasize the importance of the source of information to the dogs and how this interacts with their temperaments. our primary interest in the current experiment was to explore the effect of signal source on reward processing and the extent it matters to a dog whether a reward or no-reward signal comes from a familiar or an unfamiliar human, or from a human or a computer. if behavioral and neural response to reward signals are merely products of specific reinforcement history, dogs should not strongly differentiate signals with the same meaning across different source conditions. differential caudate activation is a reliable way to probe these questions, and can be interpreted as a marker of positive salience even in the absence of a specific behavior (ariely & berns, ; bartra, mcguire & kable, ). brain data now confirms prior behavioral evidence indicating that dogs can generalize meaningful signals when produced by unfamiliar humans, and that they can learn and respond to meaningful signals produced by computers. when examined in a mixed-effects model including signal type and signal source, the difference between reward and no-reward signals in the caudate was not significantly cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. figure activation within caudate rois in dogs with low and high aggressivity (relative to our sample mean) for reward and no-reward signals across the three source conditions. values and s.e. are derived from the full mixed-effects model, using z-scores for c-barq factor of + for dogs with higher aggressivity and − for dogs with lower aggressivity (± corresponded to the upper and lower limits of the scores). dogs with lower aggressivity showed significantly greater caudate activation to reward versus no reward signals presented by their familiar handler (p < . ), but not from unfamiliar humans (p = . ) or computers (p = . ), while dogs with higher aggressivity showed significantly greater activation to the reward versus no reward signals from the unfamiliar human (p = . ) and computer (p < . ), but not their familiar handler (p = . ). cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. figure whole-brain group analysis of the interaction between bold time course in the left and the right caudate seeds and signal presentations—warmer colors here represent increased functional coupling with the caudate seed during presentations of the reward versus no-reward signals across all three source conditions (familiar human, unfamiliar human, computer). the cluster corresponding to the right caudate seed ((a), upper left unthresholded and (c), lower left thresholded voxelwise at p < . ) is in the left posterior suprasylvian region, and the cluster corresponding to the left caudate seed ((b), upper right unthresholded and (d), lower right thresholded voxelwise at p < . ) is in the right posterior suprasylvian region. color indicates t-statistic at each voxel against the null hypothesis of equal connectivity to the caudate for reward and no-reward conditions. different across the three sources. however, including a factor representative of a key attribute of canine temperament (aggressivity) revealed significant interactions between signal source and temperament. in other words, signal source does matter to dogs, and apparently quite strongly—but the way in which it matters is highly dependent on the dog’s temperament. specifically, dogs with lower aggressivity showed a higher differential caudate response to reward versus no-reward signals from their handlers, while dogs with higher aggressivity showed a higher differential caudate response to reward versus cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. no-reward signals from the unfamiliar humans and the computer. it must be noted that “low” and “high” aggressivity measures here are relative to our sample—none of our subjects scored particularly high on c-barq aggressivity measures. moreover, the differences in caudate activation were not due simply to changes in physiological arousal as these were controlled by the inclusion of a physiological proxy vis-à-vis an roi in the csf. nor were the caudate differences due to motion because there was no significant difference in scan-to-scan motion of reward vs. no reward signals across the sources. interestingly, the differences in caudate activation were not correlated with the c-barq factors for attachment and separation. the interrelation of individual differences and neurological and behavioral responses is foundational to contemporary human psychology (e.g., depue & collins, ; ajzen, ). although less studied, there is still substantial work examining temperament in non-human animals (gosling & john, ), much of it recently in dogs (jones & gosling, ; taylor & mills, ; de meester et al., ; dowling-guyer, marder & d’arpino, ), and strong evidence indicates that, just as in humans, temperament is an important factor affecting neural and behavioral response in different contexts. our current finding, that the caudates of dogs with lower aggressivity respond more strongly to reward versus no-reward signals from familiar handlers while those of dogs with higher aggressivity respond more strongly to unfamiliar humans, is in line with prior literature on striatal reward processing. striatal response to reward depends heavily on salience (zink et al., ), and anxiety predisposes one to attend to possible threat (macleod & mathews, ). dogs who show higher aggressivity may be more aroused or more anxious in the presence of a stranger than with a familiar handler, and this likely increases the salience of the unfamiliar human, and thus the striatal activation to reward. dogs with lower aggressivity, on the other hand, may find their owner relatively more salient due to prior history of interaction and reward. as a side note, we cannot fully rule out differences in training approaches used by individual handlers as a possible contributor to our findings—it is plausible that dogs with different temperament may elicit different training approaches from their handlers. however, all dogs were trained to a similar criterion of task success using the same general approach, with biweekly oversight by project staff, over roughly the same amount of time. because the training for this task was, at essence, very simple (repeated exposures leading to classical conditioning of the reward and no reward cues), it seems unlikely that slight differences in training would account for the results reported here. due to our relatively large dataset ( s trials per dog across all three source conditions) we were also able to conduct a ppi connectivity analysis to look for brain regions that increased functional coupling with the caudate at the group level on reward versus no-reward trials. functional connectivity analysis with the right and left caudate seeds highlighted contralateral cortical patches (right for the left caudate seed and left for the right caudate seed) in the posterior suprasylvian region. there is no prior work on this region in canines, but there is a substantial literature in cats, who, as carnivores, are fairly closely related to dogs. evidence suggests the posterior suprasylvian region in carnivores is cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. a downstream visual area necessary for learning and discriminating between novel visual stimuli (markuszka, ; updyke, ; lomber, payne & cornwell, ). the posterior suprasylvian region in cats is functionally analogous to inferotemporal cortex in primates, which is also shown to play an integral role in learning new visual associations, including for faces (horel et al., ). in addition, the posterior suprasylvian region in cats and the inferotemporal region in primates have been shown to share strong connections with the striatum (yeterian & hoesen, ; royce, ; webster, bachevalier & ungerleider, ). given this, a possible interpretation of our current connectivity findings is that the caudate and posterior suprasylvian regions differentially coupled contralaterally to support contextual visual learning related to reward anticipation. this is particularly likely given that testing occurred in a novel environment, and, in the case of the stranger source condition, with a novel signal giver (likely with their own slight idiosyncrasies in signal presentation). in other words, visual features of the signal and signal presentation at mri were subtly different from those previously experienced by our subjects, likely leading to additional learning about what contexts, signals, and signal givers might lead to reward. due to the fairly low statistical threshold of these findings, they should be taken as descriptive and suggestive as opposed to conclusive, but, due to the lack of connectivity data in canines, are still of interest. in brief, we demonstrated a robust bilateral differential caudate activation to reward versus no reward signals at the group level in dogs across three source conditions. further, a measure of temperament, specifically aggressivity, was a strong predictor of differential caudate response across the three source conditions. a condition-specific functional connectivity analysis indicated increased contralateral coupling between the right and left caudate and visual learning brain regions. these findings provide new understanding of reward processing in the domestic dog and contribute to a growing body of research on individual differences in non-human animals. particularly notable is the explanatory power of a temperament measure in explaining the neural response. it is likely that there are substantial individual differences in how different dogs will react across a range of contexts, and future research and applied work should be sensitive to this, particularly when making broad claims based on findings across a group of dogs whose temperament has not been assessed. bold signal in the caudate may serve as a predictive measure of dog temperament and amenability to different training approaches, although, due to the difficulty and expense of fmri, application in the near term would likely be restricted to special instances (e.g., assessment of military or service dogs). acknowledgements we are grateful to all of the dogs’ owners for the time they have devoted to training: lorraine backer (caylin), cindy keen (jack), patricia king (kady), claire mancebo (libby), jeff petermann (nelson), cecilia kurland (ohana), vicki d’amico (pearl), nicole zitron (stella), aliza levenson (tigger), lisa tallant (velcro), darlene coyne (zen), and gb’s dog, callie. thanks to helen berns for developing the treat-kabob and dog photos. cook et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. additional information and declarations funding this work was funded by a grant from the office of naval research (n - - - ). the funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. grant disclosures the following grant information was disclosed by the authors: office of naval research: n - - - . competing interests gregory berns and mark spivak own equity in dog star technologies and developed technology used in the research described in this paper. the terms of this arrangement have been reviewed and approved by emory university in accordance with its conflict of interest policies. mark spivak is an employee of comprehensive pet therapy. peter cook has no competing interests. author contributions • peter f. cook conceived and designed the experiments, performed the experiments, analyzed the data, contributed reagents/materials/analysis tools, wrote the paper, prepared figures and/or tables. • mark spivak conceived and designed the experiments, performed the experiments, wrote the paper, reviewed drafts of the paper. • gregory s. berns conceived and designed the experiments, performed the experiments, analyzed the data, contributed reagents/materials/analysis tools, wrote the paper, prepared figures and/or tables, reviewed drafts of the paper. animal ethics the following information was supplied relating to ethical approvals (i.e., approving body and any reference numbers): this study was performed in strict accordance with the recommendations in the guide for the care and use of laboratory animals of the national institutes of health. the study was approved by the emory university iacuc (protocol #dar- - ba), and all dogs’ owners gave written consent for participation in the study. references ajzen i. . personality and behavior. berkshire: open university press. andics a, gácsi m, faragó t, kis a, miklósi a. . voice-sensitive regions in the dog and human brain are revealed by comparative fmri. current biology ( ): – doi . /j.cub. . . . cook et al. 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( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /j.cub. . . http://dx.doi.org/ . /j.bbr. . . http://dx.doi.org/ . /journal.pone. http://dx.doi.org/ . /j.jveb. . . http://dx.doi.org/ . /j.cub. . . http://dx.doi.org/ . /j. - x. . .x http://dx.doi.org/ . /cne. http://dx.doi.org/ . /cne. http://dx.doi.org/ . /j.neuroimage. . . http://dx.doi.org/ . / - ( ) - http://dx.doi.org/ . /s - ( ) - http://dx.doi.org/ . /peerj. 	one pair of hands is not like another: caudate bold response in dogs depends on signal source and canine temperament 	introduction 	materials and methods 	participants 	training 	mri scanning 	experimental design 	event recording 	c-barq 	functional data preprocessing and analysis 	rois and mixed-effects modeling 	ppi 	whole-brain group analyses 	results 	discussion 	acknowledgements 	references jir ( )print-j.pdf assessing impact of service-learning project on older, isolated adults in rural america kathy segrist, phd abstract. with help from a grant from the corporation for national service, service learning was infused into four classes of a graduate ger- ontology course, aging well. thirty-one students were paired with older adults for a period of up to twenty hours. the impact on the emo- tional and social wellness of the older adults was assessed through stu- dent journals, electronic e-mail reflection, and the administration of a survey to older adults. analysis indicated that the service provided to the older adults had a positive impact on their emotional and social wellness. [article copies available for a fee from the haworth document delivery service: kathy segrist is associate director and gerontology director, fisher institute for wellness and gerontology, ball state university, muncie, in . the author would like to acknowledge michiko iwasaki, ma, a doctoral student in the department of counseling psychology and guidance services, for the develop- ment of the -item telephone survey. this project was funded by a grant from the association for gerontology in higher education. journal of intergenerational relationships, vol. ( ) http://www.haworthpress.com/web/jir  by the haworth press, inc. all rights reserved. digital object identifier: . /j v n _ addendum this article originally appeared in journal of intergenerational rela- tionships, volume , issue . the original printing contained uninten- tional errors which have since been corrected. the article appears here as the author intended. the haworth press sincerely regrets these errors and any inconvenience they may have caused. http://www.haworthpress.com/web/jir - -haworth. e-mail address: <docdelivery@haworthpress.com> website: <http://www.haworthpress.com> © by the haworth press, inc. all rights re- served.] keywords. service learning, aging well, one-on-one pairing introduction service learning in higher education service learning is defined as a pedagogy that integrates community service activities into academic curricula. students are not credited for service but for demonstrated learning that comes from service. they are involved in planned, course-relevant activities in partnership with a community organization. students reflect on service experiences to better understand course content, to learn about themselves and the commu- nity, and to develop an understanding of civic responsibility. students participate in structured, organized opportunities for learning, and the community is better served with this linkage to a higher education insti- tution (corporation for national service, ). service learning differs from internships and practicum experience since the latter focus primarily on the development of students’ skills or the enhancement of service delivery. service learning, in contrast, is a philosophy of education that focuses on service to the community. service learning in gerontology gerontology, the study of aging, is a field that is both multidisciplin- ary and interdisciplinary across educational delivery systems. in higher education, gerontological course work is found across disciplines and the administration of gerontology programs is housed in a variety of de- partments. the goals of gerontology education include the knowledge of aging as a natural and lifelong process; understanding the physical and psycho- social aspects of aging; empathizing with older adults challenged by ill- ness and frailty; recognizing lifestyle and behavior issues affecting ag- ing adults; and becoming aware of the historical perspective of older adults. the joining of gerontology education with an intergenerational ser- vice-learning project is a perfect fit. intergenerational service learning journal of intergenerational relationships http://www.haworthpress.com focuses on issues affecting the community’s older adults, from volun- teerism and their contributions to society to the lack of supportive ser- vices and educational opportunities. younger students gain exposure and experience with a population with whom they may interact through- out their careers. intergenerational service-learning opportunities are being realized with in the policy, practice, education and research communities nationally and internationally. there is a commitment to the idea that there is a special synergy between old and young, and that challenges facing each of these populations can be best met by facilitating the connection be- tween the two groups. the old can find social and emotional support from the young, meaning in life, and the opportunity to share their wis- dom. the young can learn important life lessons, gain firsthand knowl- edge about the challenges and the triumphs of getting older, and find a mentor to guide them. a variety of intergenerational service-learning projects were com- pleted under the sustaining and expanding a national model for insti- tutionalizing intergenerational service-learning in gerontology grant from the national corporation for service to the association for geron- tology in higher education. generations together (gt), an intergene- rational studies program at the university of pittsburgh, joined with aghe in this project to develop, promote, support and expand the ser- vice-learning opportunities for aghe member institutions. the types of projects ranged from pet therapy, arts, and physical therapy activities in a nursing home to retired senior volunteer program members and college students visiting elementary schools. other projects sponsored by the sustaining and expanding a na- tional model for institutionalizing intergenerational service-learning in gerontology grant involved low vision screening in homes of elderly adults, helping asian immigrants preparing for citizenship, stress man- agement and exercise programs with elderly public housing residents, and graduate students mentoring undergraduates in the development and implementation of service-learning projects (mccrea, nichols, new- man, ). in an evaluation conducted by generations together at the univer- sity of pittsburgh ( ) based on interviews and questionnaires admin- istered to community service providers, respondents indicated that service-learning students did chores, taught older adults new skills and involved older adults in new activities as part of a course. ninety per- cent of older adults made friends with the students, and % reported one benefit: someone cared for them. eighty-one percent reported that kathy segrist there were fewer negative stereotypes of youth as a result of the inter- generational involvement. older adults’ participation in service-learning projects has been shown to improve life satisfaction, increase self-esteem, improve health, and provide opportunities to share their life experiences with a young per- son while helping to pass on their history and culture (newman, ; reville, ; kuehne, ; bringle and kremer, ). ball state university service-learning initiatives ball state university, of muncie, indiana, has been linking students with the community through service learning for over years. in , the office of leadership and service learning engaged students in service-learning activities. the university is part of a strong, higher education network in ser- vice learning referred to as the indiana campus compact. the compact attracts funds for faculty development and student scholarships and has instituted an annual student conference to showcase student achieve- ment and their collaborative projects with community organizations. fisher institute for wellness and gerontology service-learning initiatives the fisher institute for wellness and gerontology is a department in the college of applied sciences and technology at ball state univer- sity. its mission includes an emphasis on service learning and it has a history of infusing service learning into its graduate assistantship pro- gram. the associate director for experiential education, responsible for the graduate assistantship program, oversees the planning, implementa- tion and evaluation of service-learning activities for all graduate stu- dents. activities are developed and delivered through teams of students. students select the service team that best fits their goals for practical ap- plication of their course work learning. service-learning activities are offered on and off campus as described below. on campus on campus, some service-learning activities are delivered by the well- ness hall team. this team is based in a dormitory complex in which all residents sign an agreement to practice healthy behaviors. service activ- journal of intergenerational relationships ities include workshops, yoga classes, smoking cessation programs, and exercise classes. additionally, the cardinal wellness team, targeting activities for the whole university, orchestrates walking programs, well- ness wagons on various topics in strategic locations throughout the campus, health fairs and a campaign to “stomp out” smoking. wellness programming and service learning includes evaluation of student aca- demic learning. off campus off campus, graduate assistants on an outreach team have the oppor- tunity for service learning through the development, delivery and evalu- ation of wellness programming provided at senior housing complexes and participation in regional aging conferences and health fairs. addi- tionally, graduate students who work at the community center for vital aging in downtown muncie focus on providing cultural, creative and intergenerational activities for persons years and older. this team of students is responsible for implementing programming for aging adults at this site. all graduate assistants provide a monthly report of their service- learning activities with detailed reports on the learning that has oc- curred. a portion of their monthly report asks the student what they have learned from the activities in which they have been involved. bi- annually, all service-learning students are assessed by their peers and the associate director for experiential education. while the institute’s assistantships have provided excellent service- learning experiences, what has not been provided is a service-learning component in its academic curriculum. this deficit has been addressed initially through the course, geron –aging well: a systems ap- proach. the course required a service-learning component that was in- tegral to the learning environment. infusing service learning into gerontology course work geron –aging well: a systems approach is an overview course on aging through the lens of the institute’s seven dimensions of well- ness: social, physical, emotional, environmental, spiritual, vocational, intellectual. the goal of the course is to examine the seven dimensions of wellness highlighting the potential for successful aging with an em- phasis on mid-life to late-life challenges. the principle of systems the- ory which examines the interplay between and the fluctuation within kathy segrist each wellness dimension deepens students’ understanding of wellness and aging. the course is structured in a seminar format with selected readings, a web site listing distributed to each student, and additional se- lected readings made available in the institute’s learning resource cen- ter. by the end of the course students are expected to describe the interac- tive effects of seven dimension of wellness on the aging process; recog- nize the variation in each wellness dimension among a group of aging individuals; discuss current research on each life dimension in a geriat- ric population; conduct wellness assessments on mid-life and older adults; and present a program on a specialized topic related to aging well. as the instructor of the course, i was looking for more meaningful ways to meld theory and practice. as i began course preparation during the spring of , i sought assistance for the infusion of a service- learning component from the association for gerontology in higher education (aghe) through their corporation for national service funded project, sustaining and expanding a national model for institu- tionalizing intergenerational service-learning in gerontology. in early , i submitted a proposal to aghe and generations to- gether to develop a service-learning component in the graduate founda- tions course, geron –aging well: a systems approach. the service learning would focus on one-to-one matching of students with isolated and lonely older adults to examine the dimensions of the wellness model in the lives of these older adults; ascertain if the pairing could increase life satisfaction and ameliorate any effects of isolation and loneliness; change students’ attitudes toward aging adults; and to prepare the students for work in an aging world. i also proposed collab- orating with the regional area agency on aging, lifestream inc., in order to provide students with a service-learning experience. the proposal was funded beginning may through april . the service-learning component was inserted into the course syllabus for the second summer session which began the third week of june. lifestream inc., the regional area agency on aging, agreed to be the community partner for the service-learning component of the class. collaborative service-learning agency the mission of lifestream inc. is “working together to improve and extend the quality of life for persons at risk of losing their indepen- dence.” this vision presents a new paradigm of aging, one that moves from a view of illness and debilitation to one of maintaining wellness journal of intergenerational relationships and ability promotion; from isolation and loneliness to protection and security; and from unnecessary institutionalization to community in- volvement and independence (lifestream inc., ). the agency had more than people on their service waiting list, most of whom could benefit from social connections across the generations. of lifestream’s , service consumers across seven counties, % are age and older, % are below poverty level, % are fe- male, and % live alone. their service customers experience chronic conditions such as cardiac/circulatory problems, blood disorders and di- abetes, nervous system problems such as parkinson’s disease, dementias like alzheimer’s disease, cancers and other disease states. the typical client is an older, white female with limited resources who lives alone, and is at risk of institutionalization if community interventions are not in place. lifestream inc. developed a program in called angelworx. this program is based upon the pen pal concept, which brings commu- nity volunteers into contact with lonely and isolated older adults who want to remain independent in their own homes. this program recruited volunteers in , who provided , hours of service (life- stream inc., ). the older adults being served through this program are referred to as vips, very important pals. the vips are largely concentrated within the city limits of muncie, though a small percentage of the individuals live in more rural areas throughout the remainder of the county. the vips are identified through the case management system at lifestream inc. and are either on the waiting list for services or are not currently in need of services that the agency provides. those who are paired with a vip are called angels. service learning in geron the service-learning project evaluated in this paper required each stu- dent (angel) to ( ) keep a journal of their experience in order to evaluate the partnering experience with an older adult, ( ) submit weekly e-mail reflections of the pairing and their relationship to class materials and discussions, and ( ) to dialog with others during class about their ser- vice-learning experiences. a service log sheet was assigned to each student, and a set of questions were provided to prompt their written re- flections. for example, students were asked to think about what they ob- served, what they did, what happened as a result of their activities, how the experience felt, and if they would do anything differently. kathy segrist the angelworx program director visited class, gave an overview of the program, read descriptions of the vips who requested interaction with a student, explained the agency’s service log requirement and matched the student with a vip. the program director, along with my- self, became a direct contact if any problems arose during the service- learning experience. for the fall and classes, the partnering experience between the vip and angel was hours, while for the shorter summer class it was ten hours. methodology this project consisted of two distinct samples: the students and the vips. since the inception of the service-learning component in the sum- mer class a total of students have participated in the project. seventy-seven percent were women, % were caucasian, and % were gerontology majors. the students ranged in age from to . of the vips that were matched, % were women, % included a spouse or significant other, % were caucasian, % were african american, and % lived within the muncie city limits. instruments and procedures the student journals and weekly e-mail reflections were used to as- sess the student perception of their impact on the vips. most journals did not have information about the impact of their pairing on all seven wellness dimensions. i limited my review, therefore, to comments relat- ing to the two wellness dimensions that provided the most data: social and emotional wellness. we also asked the vips to respond to the following statements and probed them for additional details on all responses. this telephone sur- vey was administered by an angelworx staff member. . i have enjoyed participating in the angelworx project. . the angelworx project addressed my needs. . when i first heard of the project, my immediate response was “yes” i am interested or “no” i am not interested. . i would recommend the angelworx project to a friend. . if i had the opportunity, i would participate in the angelworx project again. . my “angel” and i turned out to be a good match. journal of intergenerational relationships . i would chose the same “angel” if i were to participate in this program again. . the questions that i was asked to answer were appropriate and acceptable to me. . i am interested in learning about additional services offered through lifestream inc. . i would be willing to participate in other service program or re- search studies sponsored by lifestream inc. and/or ball state university. the responses from the journals, e-mails and telephone survey were reviewed to identify statements that demonstrated impact on emotional and social wellness. emotional wellness of a vip was defined as the awareness and acceptance of a wide range of expressed feelings, indica- tions of seeking support and assistance, and indications of how they dealt effectively with stress. an emotionally well person understands their personal limitations, how to seek support and assistance, and how to deal effectively with stress. social wellness was defined as statements about developing friend- ships with the student, about enhancing interactions with their family, and about making new contacts with others. such statements were con- sidered as indicators of the broadening of the social network of the vip. analysis the gerontological literature is robust in documenting the impact of emotional satisfaction and social support on the lives of older adults (neugarten, ; spreitzer & snyder, ; larson, ; brockett, ). the degree of emotional satisfaction is thought to be linked to at- tachments to family and community and health (george, ; krause, ). antonucci ( ; ), krause ( ; ), and others (wehry, ; bondevik & skogstad, ; reker, ; hinterlong, ) have studied social support as a significant buffer and resource for attaining and maintaining mental health. although this service-learning project ex- amined all seven dimensions of wellness, we decided to focus on these two dimensions because they appeared most prominently in the data. changes in emotional wellness of vip vips indicated their gratitude to students for interacting with them, whether it was for a gesture of bringing something to the visit, doing a kathy segrist service while visiting such as cleaning, planting flowers, painting, run- ning errands, or for a service provided outside the vip’s home such as being taken to dinner or being visited in the hospital. many of these ac- tivities were designed to enhance emotional wellness, and they ap- peared to have succeeded. the following student journal reflection is indicative of the develop- ment of trust over time. a ninety-year-old female was paired with an angel in her twenties. the angel made the following comment after a few visits from her vip. she asked me if i was evaluating her for my class project. i ex- plained that i was not evaluating her and was just keeping a journal to record my experience each week we met. she seemed satisfied with this answer. early in the pairing, the older woman was leery of the questions being asked and expressed her concern about being studied. as the visits con- tinued, she felt more comfortable with the relationship and began to feel that she was appreciated and was contributing to the student’s knowl- edge. this same older woman made the following comment during a later meeting with her angel about lack of contact with her. she mentioned that she missed me yesterday when i did not call or visit. i will definitely make sure that in the future, i will call her if i am not able to meet with her on sundays. the older woman here was exhibiting the continued development of an emotional bond with the student. this bonding continued to grow as the visits increased. the following reflection indicates the emotional bond and the separation anxiety that the older woman had at their last meeting. she told me how much she’s enjoyed my company. then she said she felt like crying. we hugged and she gave me a kiss on the cheek . . . she thanked me and told me that she had gotten a lot from me also. helping an older adult deal with a stressful situation is another indi- cator of emotional wellness that was identified multiple times. the fol- lowing student journal reflection is one example. she was concerned about having to take a trip with her family and didn’t think that she could meet the physical demands of the trip. i journal of intergenerational relationships just listened and she came to the conclusion on her own that she wouldn’t go on the trip. she feels badly about backing out of something she agreed to but feels that the physical problems would keep her from enjoying herself. this woman was able to talk through her anxiety about feeling forced to do something that she felt was beyond her physical capacity. she was anxious since she had agreed to go but felt comfortable with the angel to talk about the situation and come to a resolution of the problem that satisfied her. the responses of one vip to the survey conducted by angelworx staff indicated there were exceptions to increases in emotional wellness. one vip indicated that she would not participate in a research project with students in the future. she felt uncomfortable by the questions be- ing asked of her and felt the program was more for the students than for her. all of the other respondents, however, indicated that they would par- ticipate in a future match, would encourage other vips to become en- gaged in the service-learning project, and would be willing to be matched again with their current angel. changes in social wellness of vip the following statement in a student journal is indicative of improve- ment in social wellness. she said that she would show the book i gave her to her son and thinks he’ll enjoy it. the student had brought a book that she thought the vip would enjoy based on past conversations. the vip thought that the book was very in- teresting and that her son would benefit from it as well. this resulted in an additional visit that she requested from her son. the following student journal reflection indicated the inclusion of the angel as an extended member of her family. we have visited several of her relatives in the area and she intro- duced me as ‘her angel.’ some of the relatives thanked me and told me she has been socializing more since our project began. this reflection was written in the journal of an angel who visited an older woman raising a -year-old disabled grandchild. her family had kathy segrist been distant from her and had some difficulty dealing with the disabled grandson. the angel became involved with the family and helped re- connect the older adult and disabled grandson with them. later the an- gel ran into his vip’s granddaughter in the mall who thanked him for the improved outlook of her grandmother due to his visits and how it made visiting grandmother easier. discussion time-bound pairings we realize that the project design is limited to results documented over a brief single semester and that this limited time period could have negative consequences for a vip. one vip indicated that they felt like crying during the last visit from their angel. another asked her angel if there was some way that they could continue to communicate. another indicated that they did not want to continue with the project. the impact on the emotional satisfaction and the social support system of a vip af- ter the semester ends is of concern to us. we do not want the vip to be- come more isolated and refuse to participate in the angelworx program altogether. to address possible negative consequences on the long-term emo- tional satisfaction and support network of a vip, efforts will be made to encourage additional connections between future classes of angels and former vips that previous students worked with. students will be en- couraged to make phone calls or engage in written correspondence with former vips. also, some of the angels have continued to maintain con- tact with their vip. they have sent cards for special occasions or have sent gifts for birthdays or during the christmas holidays. additionally, the pool from which a student can choose to be matched with a vip in- cludes former vips who have participated in previous class matches with students. limitations of the evaluation design and assessment instruments it would be helpful to assess emotional and social wellness before the project begins in order to better assess changes over time. this could shed light on the vip’s perception of their current life situation and how changes emerge as the students help them deal with life changes and challenges. journal of intergenerational relationships the purpose of the study was to assess the impact of the service- learning project on the older, isolated adults. the student journal quotes for the older adults and the responses to the telephone survey from the older adults yielded evidence of the impact of the project on the vip. it would have been beneficial to have utilized a standardized tool to assess the impact of the pairing on the emotional and social wellness of the older adults. it may be possible to utilize a team of students not involved in the service-learning project to initiate face to face interviews with each vip pre and post service-learning project to ascertain their emo- tional and social wellness. at the present time, i am working to incorporate a service-learning component into the public policy and aging course that i teach each spring. beginning with the spring class, i added a required -hour service-learning project. students are required to choose among several -hour projects such as involvement in a “rally day” at the state capital on issues that affect seniors, or to make contact with a state representative about an aging issue. this service-learning project uses a group project design. course by course, we hope to infuse service learning throughout the curriculum and will employ a one-on-one model or a group project in other courses. conclusion recent articles have pressed for additional research on the benefits of service learning (glemon, holland, seifer, shinnamom and connors, ; gelmon, holland and shinnamom, ; vernon and ward, ; edward and marullo, ; roschelle, turpin and elias, ; ward and wolf-wendel, ). eyler, giles and gray ( ) in their review of higher education service-learning literature from - identi- fied only eight studies that focused on community outcomes in service learning. though our collaboration with an aging agency went well, it can be difficult to collaborate with a community agency. research may point to new directions for increasing the probability of success. critical tasks include training field personnel in the collaborating agency, overcom- ing obstacles to participation by agency clients, and managing data col- lection (pillemer k et al., ). the gerontological literature regarding service learning is even more limited. the recent efforts by the association for gerontology in higher education and generations together to assess outcomes of funded gerontological service-learning initiatives in higher education should spur needed efforts in this area. kathy segrist their needs to be greater emphasis on intergenerational service learn- ing in higher education as all students will be facing a work life that en- counters a greater proportion of aging coworkers. insight into the future work environment can benefit students in a wide variety of disciplines like business (marketing, advertising, and sales), science, communica- tions, and health care. references antonucci, t. c. ( ). social support: theoretical advances, recent findings and pressing issues. in i. g. sarason & b. r. sarason (eds.), social support: theory, research, and ap- plications (pp. - ). dordrecht, the netherlands: martinus nijhoff. antonucci, t. c. ( ). religiosity, sense of control, life satisfaction mediation and moderation. paper presented at the gerontological society of america conference, boston, ma. bondevik, m., and skogstad, a. ( ). loneliness among the oldest old, a compari- son between residents living in nursing homes and residents living in the commu- nity. international journal of aging and human development, , - . bringle, r. g. and kremer, j. f. ( ). evaluation of an intergenerational service learning project for undergraduates. educational gerontology, ( ), - . brockett, r. g. ( ). life satisfaction and learner self-direction: enhancing quality of life during later years. educational gerontology, , - . corporation for national service, . http://www.cns.gov edwards, b. and marullo, s. (eds). ( ). service learning pedagogy and universi- ties’ response to troubled times (special issue). american behavioral scientist, ( ). eisendorfer, c. and j. altrocchi. ( ). a comparison of attitudes toward old age and mental illness. journal of gerontology, , - . eyler, j., giles, d., and gray, c. ( ). at a glance: what we know about the effects of service learning on students, faculty, institutions, and communities, - . university of minnesota: national service-learning clearinghouse. http://www.umn. edu/~serve gelmon, s., holland, b. seifer, s., shinnamon, a., and connors, k. ( ). commu- nity-university partnerships for mutual learning. michigan journal of community service learning, , - . gelmon, s., holland, b., and shinnamon, a. ( ). health professions schools in service to the nation: final evaluation report, - . portland, or: portland state university. generations together, university of pittsburgh ( ). sustaining and expanding a national model for institutionalizing intergenerational service-learning in geron- tology. pittsburgh, pa. george, l. k. ( ). subjective well-being: conceptual and methodological issues. in c. eisendorfer (ed.), annual review of gerontology and geriatrics (pp. - ). new york: springer. hinterlong, j. ( ). productive engagement and well-being in later life. paper pre- sented at the gerontological society of america annual conference, boston, ma. journal of intergenerational relationships http://www.cns.gov http://www.umn krause, n. ( ). receiving emotional support from parent during childhood: impact on health and aging. paper presented at the gerontological society of america annual conference. boston, ma. krause, n. ( ). gender and ethnicity differences in psychological well-being. in g. l. maddox & m. p. lawton (eds.), annual review of gerontology and geriatrics (vol. , pp. - ), new york: springer. krause, n. ( ). race differences in life satisfaction among aged men and women. journal of gerontology: social sciences, , - . kuehne, v. s. ( ). older adults in intergenerational program: what are their experi- ences really like. activities, adaptation & aging, ( ), - . larson, r. ( ). thirty years of research on the subjective well-being of older amer- icans. journal of gerontology, , , - . lifestream inc. ( ). making a difference . . . changing lives . . . offering choices. annual report, yorktown, in. mccrea, j., nichols, a. and s. newman, (eds.). ( ). intergenerational service-learn- ing in gerontology: a compendium–volume ii. the association for gerontology in higher education/generations together, university of pittsburgh. neugarten, b. l., havinhurst, r. j., and robin, s. s. ( ). the measurement of life satisfaction. journal of gerontology, , - . newman, s. ( ). the impact of the school volunteer experience on the well-be- ing of older persons. a paper presented at the gerontological society of america. pillemer, k, czaja, s., schulz, r. and stahl, s. ( ). finding the best ways to help: opportunities and challenges of intervention research on aging. the gerontologist, vol. , special issue , - . reker, g. t. ( ). personal meaning, optimism, and choice: existential predictors of depression in community and institutional elderly. the gerontologist, vol. , - . reville, s. ( ). young adulthood to old age: looking at intergenerational possi- bilities from a human development perspective. in s. newman & s. brummer (eds.), intergenerational program: imperative strategies, impacts, trends, - . new york, ny: the haworth press, inc. roschelle, a., turpin, j. and elias, r. ( ). who learns from service learning? amer- ican behavioral scientist, ( ), - . spreitzer, e. and snyder, e. ( ). correlates of life satisfaction among the aged. journal of gerontology, , - . vernon, a., and ward, k. ( ). campus and community partnerships: assessing im- pacts and strengthening connections. michigan journal of community service learning, , - . ward, k. and wolf-wendel, l. ( ). community-centered service-learning: mov- ing from doing for to doing with. american behavioral scientist, ( ), - . wehry, s. ( ). mental health needs of the homebound elderly. journal of long- term home health care, , - . kathy segrist untitled systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. the senator-ontop series iosief abraha, joseph m rimland, fabiana mirella trotta, giuseppina dell’aquila, alfonso cruz-jentoft, mirko petrovic, adalsteinn gudmundsson, roy soiza, denis o’mahony, antonio guaita, antonio cherubini to cite: abraha i, rimland jm, trotta fm, et al. systematic review of systematic reviews of non- pharmacological interventions to treat behavioural disturbances in older patients with dementia. the senator-ontop series. bmj open ; :e . doi: . /bmjopen- - ▸ prepublication history and additional material is available. to view please visit the journal (http://dx.doi.org/ . /bmjopen- - ). received may revised september accepted october for numbered affiliations see end of article. correspondence to dr iosief abraha; iosief_a@yahoo.it abstract objective: to provide an overview of non- pharmacological interventions for behavioural and psychological symptoms in dementia (bpsd). design: systematic overview of reviews. data sources: pubmed, embase, cochrane database of systematic reviews, cinahl and psycinfo ( – march ). eligibility criteria: systematic reviews (srs) that included at least one comparative study evaluating any non-pharmacological intervention, to treat bpsd. data extraction: eligible studies were selected and data extracted independently by reviewers. the amstar checklist was used to assess the quality of the srs. data analysis: extracted data were synthesised using a narrative approach. results: srs and primary studies were identified, comprising the following categories of non- pharmacological interventions: ( ) sensory stimulation interventions ( srs, primary studies) that encompassed: acupressure, aromatherapy, massage/ touch therapy, light therapy and sensory garden; ( ) cognitive/emotion-oriented interventions ( srs; primary studies) that included cognitive stimulation, music/dance therapy, dance therapy, snoezelen, transcutaneous electrical nerve stimulation, reminiscence therapy, validation therapy, simulated presence therapy; ( ) behaviour management techniques ( srs; primary studies) and ( ) other therapies ( srs, primary studies) comprising exercise therapy, animal-assisted therapy, special care unit and dining room environment-based interventions. music therapy was effective in reducing agitation (smd, − . ; % ci − . to − . ; p= . ), and anxiety (smd, − . ; % ci − . to − . ; p= . ). home-based behavioural management techniques, caregiver-based interventions or staff training in communication skills, person-centred care or dementia care mapping with supervision during implementation were found to be effective for symptomatic and severe agitation. conclusions: a large number of non-pharmacological interventions for bpsd were identified. the majority of the studies had great variation in how the same type of intervention was defined and applied, the follow-up duration, the type of outcome measured, usually with modest sample size. overall, music therapy and behavioural management techniques were effective for reducing bpsd. introduction dementia is a neuropsychiatric syndrome characterised by cognitive decline and pro- gressive deterioration of daily function, often associated with behavioural disturbances. strengths and limitations of this study ▪ non-pharmacological interventions have gained increasing attention in recent years as an alterna- tive first-line approach to treat behavioural and psychological symptoms in dementia (bpsd). ▪ the strength of this review is its extensive, com- prehensive systematic search of studies that investigated non-pharmacological interventions for bpsd. it provides a compendium of the types of non-pharmacological interventions, including the component of each single interven- tion, the dosage (when available) and the dur- ation of the treatment. ▪ primary studies were generally of limited sample size; there was substantial variation in the characteristics of the intervention and the authors of primary studies reported different con- ceptual frameworks, and sometimes broad, and quite generic descriptions, of the interventions. abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access research o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://crossmark.crossref.org/dialog/?doi= . /bmjopen- - &domain=pdf&date_stamp= - - http://bmjopen.bmj.com http://bmjopen.bmj.com/ http://bmjopen.bmj.com/ http://bmjopen.bmj.com/ http://bmjopen.bmj.com/ the prevalence of dementia in older participants is reported to be ∼ % worldwide and, with global popula- tion ageing, it is expected to rise, although some recent studies have suggested declining trends in dementia frequency. dementia presents a considerable burden to families and caregivers and is becoming a major challenge for all healthcare systems, as well as for society at large. alzheimer’s disease (ad) is the most common form of dementia in older people, accounting for % of cases. approximately five out of every six patients with dementia, including those living at home, will develop behavioural and psychological symptoms during the course of the disease. – behavioural and psychological symptoms in dementia (bpsd) are defined as signs and symptoms of disturbed behaviour, mood, thought or per- ception. these disturbances, namely agitation, depres- sion, elation, delusions and hallucinations, are strongly correlated with each other. twenty per cent of those initially without symptoms will manifest them within years of dementia diagnosis, whereas – % of those with clinically important symptoms remain agi- tated for several months. in addition, at least % of patients with dementia present with significant bpsd on a monthly basis. agitation, together with depression, hinder activities and relationships, cause feelings of helplessness and distress in families and formal care- givers and are strong predictors for poor quality of life, as well as nursing home admission. currently, options for treating bpsd include pharma- cological and non-pharmacological therapies. psychotropic medications are often used to reduce the frequency and severity of bpsd, but in the majority of patients, they provide only modest symptom control. – a recent trial reported that the addition of citalopram to psychosocial support significantly reduced agitation and caregiver distress. however, their adverse effects are common and problematic, in particular the increased risk of falls and fractures, stroke and even mortality. in addition, there is some evidence that the use of benzodiazepines to treat agitation in patients with dementia may increase cognitive decline and may expose patients to an immediate risk of injurious falls. finally, memantine and cholinesterase inhibitors are considered to be of very limited value to improve agita- tion in participants with ad. in general, non-pharmacological interventions are considered a preferable alternative to psychotropic pharmacotherapy for treating bpsd. however, there is conflicting evidence concerning the efficacy and practi- cality of non-pharmacological interventions to improve bpsd, particularly agitation. the purpose of the present overview is to assess the evidence supporting these non-pharmacological inter- ventions with a view to providing a working compen- dium for the non-drug management of bpsd. the present overview updates the evidence on the same theme gathered by a previous systematic overview published in . methods this work is part of the optimal evidence-based non-drug therapies in older people (ontop) project, a work package of a european union funded fp research named senator (software engine for the assessment & optimization of drug and non-drug therapy in older persons). the ontop aim is to undertake a literature search of systematic reviews (srs) and provide clinical recommendations concerning evidence-based non-pharmacological treatments of several prevalent medical conditions affecting older people, including delirium, pressure ulcers, – falls, stroke and heart failure. a protocol that describes the search strategy, screening and inclusion cri- teria, has been previously published. briefly, to obtain the evidence regarding the non-pharmacological inter- ventions, we first identified published srs using a system- atic search across several databases. after processing eligible srs, we identified and obtained primary studies from these srs to generate the compendium of non- pharmacological interventions. in a subsequent work will present the assessment of the body of evidence and provide recommendations according to the grade approach. search strategy and inclusion criteria for systematic reviews the search sources included the cochrane database of systematic reviews, pubmed, psycinfo and cinahl (see online supplementary appendix ). two criteria were considered for further evaluation of an abstract: ( ) a paper defined as a review or a meta-analysis; ( ) the use of any non-pharmacological intervention to treat behavioural disturbances in patients with dementia. the publication years ranged from to march . subsequently, full-texts of relevant abstracts were obtained and screened to identify srs of interest based on ( ) the use of at least one medical literature data- base; ( ) the inclusion of at least one primary study and ( ) the use of at least one non-pharmacological inter- vention to treat behavioural disturbances in people aged +years. we assessed the methodological quality of each sr using the amstar (a measurement tool to assess reviews) instrument that contains items. final grading of the methodological quality of each sr was based on the overall score and reported as either ‘high’ (score≥ ), ‘medium’ (score – ) or ‘low’ (score≤ ). two reviewers independently assessed the quality of the srs, and disagreements were resolved by consensus. data extraction and management from each sr, the following data were collected: the publication year, the databases searched, the study popu- lation, the non-pharmacological interventions, the number of primary studies included, the outcome mea- sures and the amstar score. pairs of reviewers inde- pendently screened titles, abstracts and full texts of abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ articles. disagreements were resolved by discussion or, where necessary, by consulting another author. outcome measures we focused on reviews that considered bpsd, as a primary outcome, measured by ( ) multidomain scales (eg, neuropsychiatric inventory (npi), brief psychiatric rating scale, bprs), ( ) scales specific to agitation (eg, cohen-mansfield agitation inventory, cmai) and ( ) scales specific to depression or anxiety (eg, cornell scale for depression in dementia, csdd). inclusion criteria for primary studies and assessment from the included srs, we obtained any experimental comparative study, either randomised or non-randomised, that investigated any non-pharmacological intervention to treat bpsd in older patients. observational studies or before–after studies, with historical controls, were excluded. as outlined in our protocol, we extracted data from primary studies to perform meta-analyses and heterogen- eity was addressed using the cochrane collaboration approach. risk of bias assessment and grading the quality of evidence we used the cochrane collaboration method to evaluate the risk of bias. the domains considered were random sequence generation, allocation concealment, blinding of participants, personnel, or outcome assessor, incom- plete outcome data, selective reporting and other potential biases (eg, balance in baseline characteristics). the overall quality of evidence was assessed using the grade (grading of recommendations, assessment, development and evaluation) methodology that takes into account the risk of bias, consistency of results across the studies, precision of the results, directness and likeli- hood of publication bias. results regarding the risk of bias assessment, and grading the quality of evidence, will be provided in a companion paper. results our search strategy identified abstracts of which were duplicates and were subsequently removed. after abstract screening, records were identified for full-text assessment. of these, reviews were included in this overview. from these srs, we obtained primary studies from which we abstracted details of the non-pharmacological interventions. figure shows the study screening process. table depicts the basic characteristics of the included srs. the characteristics of relevant primary studies are reported in online supplementary appendix as electronic tables (etable). the amstar evaluation are summarised in online supplementary appendix . the interventions in this overview were classified according to the following categories: ( ) sensory stimu- lation interventions that encompass acupuncture, aroma- therapy, massage therapy, light therapy, sensory garden intervention, cognitive stimulation, music/singing and dance therapy, snoezelen and transcutaneous electrical figure study screening process. abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ table characteristics of included systematic reviews/meta-analyses author (year) databases searched population non-pharmacological intervention primary studies outcome aguirre medline, embase, cinahl, psycinfo, the cochrane library, lilacs, trial registers, grey literature participants who had a diagnosis of dementia (alzheimer’s disease, vascular dementia mixed alzheimer’s and vascular dementia, other types of dementia), including all levels of cognitive impairment cognitive stimulation rcts mood, quality of life, well-being, adl, communication, behaviour, neuropsychiatric symptoms and social interaction alves medline, psycinfo, cochrane library, embase, metaregister of clinical trials, ovid all, ebm reviews patients diagnosed with alzheimer’s disease (without mild cognitive impairment, mixed alzheimer’s disease, vascular dementia, and other types of dementia such as frontotemporal dementia or dementia with lewy bodies) memory-training program; attention- stimulating activities; computerized ‘cognitive training’ studies cognitive functioning; adl; memory symptoms; finger tapping test; depressive symptoms; qol; reaction time; screening of mental status; neuropsychiatric symptoms bernabei medline, embase, psycinfo elderly patients affected by dementia or psychiatric disorders animal-assisted interventions studies on bpsd ( case–control and repeated measures design) any psychiatric disorder blake pubmed, science direct, the cochrane library and web of knowledge adults diagnosed with dementia who have depressive symptoms reminiscence group therapy studies change in level of depressive symptoms carrion medline, embase, pascal, the cochrane library, national guidelines clearinghouse, trip database, healthstar, cinhal and psycinfo older people diagnosed as having alzheimer’s disease or probable alzheimer’s disease cognition-oriented care approaches: .reality orientation; . skills training reality orientation: rcts;skills training: rcts cognitive function; behavioural symptoms and mood chaudhury medline, cinahl, ageline, web of science, and simon fraser university library catalogue long-term facility residents with dementia supportive dining environment studies included: light therapy ( study); music therapy ( studies) physiological and sociopsychological aspects of dining, including caloric intake, enjoyment in eating and social interaction collet medline, psycinfo and pubmed nursing home patients suffering from either somatic illness or dementia combined with psychiatric disorders or severe behavioural problems psychiatric care and nursing home care combination rcts psychosis and depression, increase in global functioning, behaviour disorders, cognition and adl continued abraha i,etal.bm j o pen ; :e .doi: . /bm jopen- - o p e n a c c e s s on april , by guest. protected by copyright. http://bmjopen.bmj.com/ bmj open: first published as . /bmjopen- - on march . downloaded from http://bmjopen.bmj.com/ table continued author (year) databases searched population non-pharmacological intervention primary studies outcome eggenberger medline, amed, embase, psycinfo, cinahl, the cochrane library, gerolit, web of science people with dementia; professional and family caregivers communication skills training by means of face-to-face interaction rcts qol, social interactions forbes medline, embase, the cochrane library, cinahl, psycinfo, lilacs+several registries, proceedings+other sites people with dementia light therapy studies met the inclusion criteria—only were included in the analyses because of inappropriate reported sleep, behaviour, mood, and cognitive disturbances associated with dementia forrester medline, embase, the cochrane library, cinahl, psycinfo, lilacs+several registries, proceedings+other sites people with dementia aromatherapy rcts agitation, behavioural symptoms, quality of life and adverse effects fung medline, cinahl, cochrane library, psycinfo, social sciences citation index, scopus participants with dementia aromatherapy studies ( rcts; controlled trials) behavioural problems gonzalez medline, amed, cinahl, isi web of knowledge, embase and scopus people with dementia sensory gardens and horticultural activities rcts agitation levels; cognitive status guzman-garcia medline, ageinfo, ebm reviews ebsco-cinahl, embase, isi web, lilacs, scopus zetoc; reference lists; ethos-beta; acer; google;+ people with dementia living in long-term care homes dance movement therapy; dance therapy; psychomotor dance-based; social dancing studies ( rct) not specified kiepe medline and psycinfo patients with mental illness dance therapy study (rct) for dementia any physical and mental outcomes kim medline, cinahl, proquest medical library, and cochrane and ot persons with dementia occupational therapy studies behavioural problems and depression kverno medline, cinahl, psycinfo, embase individuals diagnosed with advanced dementia any non-pharmacological intervention primary studies neuropsychiatric symptoms lai medline, the cochrane library, embase, psycinfo and cinahl patients with a confirmed diagnosis of dementia or alzheimer’s disease or related disorders special care units non-randomised studies ( rct) behavioural problems, mood, use of restraints and psychotropic medication continued abraha i,etal.bm j o pen ; :e .doi: . /bm jopen- - o p e n a c c e s s on april , by guest. protected by copyright. http://bmjopen.bmj.com/ bmj open: first published as . /bmjopen- - on march . downloaded from http://bmjopen.bmj.com/ table continued author (year) databases searched population non-pharmacological intervention primary studies outcome livingston medline; web of knowledge; embase; british nursing index; the health technology assessment programme database; psycinfo; nhs evidence; system for information on grey literature participants with dementia sensory, psychological and behavioural interventions primary studies agitation mcdermott medline, embase, psycinfo, cinahl, cochrane library, web of science, j music therapy, and nordic journal of music therapy participants with dementia music therapy studies ( rcts; non-randomised trials; before–after studies behavioural, psychological aspects, hormonal and physiological changes, social and relational aspects of music therapy moniz-cook medline, embase, cinahl, psycinfo and lilacs;+ people with dementia, irrespective of its cause or diagnostic subtype, with reported bpsd or ‘behaviours that challenge’, receiving support or treatment from mental health workers, care staff or family or other informal caregivers formulation-led individualised interventions targeting reduction in the person’s distress and/or resolution of the caregivers’ management difficulties trials challenging behaviours (eg, verbal and physical aggression, restlessness) and mood (depression).changes in caregiver self-report of reaction to challenging behaviours. moyle medline, cinhal, psycinfo, cochrane library, scopus, web of science, health reference center academic older people with dementia: massage therapy of studies identified only satisfied the quality of the inclusion criteria agitated behaviour o’neill medline, the cochrane library, psycinfo adults with mild, moderate, or severe dementia non-pharmacological treatments systematic reviews behavioural symptoms of dementia olazaran medline, psycinfo, cinahl, embase, lilacs and the cochrane dementia and cognitive improvement group specialized register people with alzheimer’s disease and related disorders any non-pharmacological intervention cognition; institutionalization; adl; behaviour; mood; qol; psychological well-being padilla medline, the cochrane library, ageline, cinahl, psycinfo, embase, and healthstar, ot seeker, and allied and complementary medicine+reference list people with alzheimer’s disease and related dementias environment-based interventions; multisensory approaches; other interventions cross-overall trial (environmental-based intervention) performance, affect and behaviour continued abraha i,etal.bm j o pen ; :e .doi: . /bm jopen- - o p e n a c c e s s on april , by guest. protected by copyright. http://bmjopen.bmj.com/ bmj open: first published as . /bmjopen- - on march . downloaded from http://bmjopen.bmj.com/ table continued author (year) databases searched population non-pharmacological intervention primary studies outcome potter medline, embase, cinahl, psycinfo, amed, the cochrane library, the uk national research register, current controlled trials older people with dementia strength and flexibility; strength and balance tai chi classes sitting and standing; walking; stretching; seated exercises; balance training; endurance; aerobic training rcts physical functioning, quality of life anddepression robinson medline; ebm reviews; amed; bni; cinahl; embase not specified acupressure rct (of acupressure studies) any outcome salami medline, embase and the cochrane central register people with alzheimer’s disease any treatment option for sleep disturbance not attributable to other clinical conditions rcts sleep disturbance seitz medline, embase, psycinfo, the cochrane library and google scholar people with dementia any non-pharmacological intervention studies neuropsychiatric symptoms subramaniam medline, psycinfo, cinahl, the cochrane library, embase and web of knowledge people with dementia reminiscence therapy rcts psychosocial benefits thune-boyle medline, embase, psycinfo people with dementia exercise therapy rcts behavioural and psychological symptoms ueda medline, cinahl, psycinfo people with dementia music therapy of studies considered agitation or anxiety ( cct; rcts) behavioral and psychological symptoms; adl; cognitive function vasionytė jstor, ebsco, eric, scirus, medline, psycinfo, cochrane library and proquest, the journal databases sage pub and cambridge journals patients with dementia music therapy rcts affective, behavioural, cognitive and physiological outcomes vasse pubmed, psycinfo, web of science and the cochrane library people with dementia a walking program combined with conversation, group validation therapy, life review programs, cognitive stimulation therapy, activity therapy and staff education rcts communication between residents with dementia and care staff; neuropsychiatric symptoms of residents with dementia. continued abraha i,etal.bm j o pen ; :e .doi: . /bm jopen- - o p e n a c c e s s on april , by guest. protected by copyright. http://bmjopen.bmj.com/ bmj open: first published as . /bmjopen- - on march . downloaded from http://bmjopen.bmj.com/ table continued author (year) databases searched population non-pharmacological intervention primary studies outcome wall medline, cinahl, psycinfo older people with dementia music therapy rcts behaviour and well-being whear medline, psycinfo, embase, hmic, amed; cochrane library; cinahl; british nursing index; assia; social science citation index; ethos; social care online and opengrey november . elderly residents with dementia mealtime interventions categorized into four types: music, changes to food service, dining environment alteration, and group conversation studies ( time series repeated measures; pre-post study design; controlled clinical trial) behavioural symptoms (anxiety, agitation, aggression) woods medline, the cochrane library, embase, psycinfo, cinahl and lilacs, ongoing trial databases and grey literature sources people with dementia and their caregivers cognitive stimulation rcts cognitive functioning; mood; qol; adl; behavioural symptoms; neuropsychiatric symptoms yu medline (pubmed), cinahl, psycinfo, and the cochrane library people with early-stage alzheimer’s disease and dementia cognitive training rcts any dementia symptoms in early-stage alzheimer’s disease and related dementia. zimmerman medline, embase, the cochrane library, the cumulative index to nursing and allied health literature, ageline, and psycinfo people with dementia in nursing homes and other residential long-term care settings effective characteristics of residential long-term care studies: prospective cohort studies, rcts, non-randomized controlled trial health and psychosocial outcomes adl, activities of daily living; qol, quality of life; rct, randomised controlled trial. abraha i,etal.bm j o pen ; :e .doi: . /bm jopen- - o p e n a c c e s s on april , by guest. protected by copyright. http://bmjopen.bmj.com/ bmj open: first published as . /bmjopen- - on march . downloaded from http://bmjopen.bmj.com/ nerve stimulation (tens) therapy; ( ) cognitive/ emotion-oriented interventions that include reminis- cence therapy, validation therapy, simulated presence therapy (spt); ( ) behavioural management technique and ( ) other interventions, such as exercise therapy, pet-therapy and special care unit. sensory stimulation interventions shiatsu and acupressure only one sr was identified. robinson (amstar= ) investigated the evidence available for shiatsu and acupressure in bpsd. shiatsu is a form of complementary medicine primarily developed in japan, which employs gentle manipulations, stretches and pres- sure with the fingers, elbows, knees and feet. acupressure is similar, but exerts pressure for longer on specific meridian points according to traditional chinese medicine or acupoints of the human body in order to ‘balance energy fields’. the authors identified rcts, controlled clinical trials, crossover trials, within-participants studies, observational study, uncontrolled studies and pro- spective study. only one randomised trial (n= partici- pants) using acupressure in dementia participants was relevant for our assessment. the authors reported that agitation, aggression and physically non-aggressive behaviour all declined significantly in demented participants. aromatherapy aromatherapy is proposed as a complementary interven- tion, to treat a wide-range of health problems, including lack of sleep and behavioural symptoms for people with dementia. aromatherapy is based on the use of plant products or aromatic plant oils to produce essential oils and blends of aromatic compounds. aromatherapy can be delivered through massage or topical application, inhalation and water immersion. our systematic search identified three srs that consid- ered aromatherapy as an intervention to treat agitated behaviours and other outcomes in patients with demen- tia. the amstar scores ranged from to across the reviews. the range of included primary studies varied from to . the most recent sr was a cochrane review, which had the highest amstar quality score ( ). the review included only randomised trials and launched its last search strategy in january . seven studies with participants were identified. the types of interventions included lavender-based (four studies – ), melissa- based (two studies ) and lemon balm oil ( study) aromatherapy. however, only two of these had usable data for pooling. the first study (n= ) reported a favour- able treatment effect on measures of agitation (md − . , % ci − . to − . ) and behavioural symptoms (md − . , % ci − . to − . ), whereas the second trial (n= ) did not detect any difference in agitation (md . , % ci − . to . ) or behavioural symptoms (n= , md . , % ci − . to . ). the review authors remarked that the published studies used different scales to assess the behavioural symptoms and were limited in sample size and methodological quality, particularly because of selective reporting bias. the second review by seitz et al consisted of any non- pharmacological interventions, including aromatherapy, to treat outcomes relevant to patients with dementia. the review reported data in a narrative way and cited only one study of aromatherapy, which was also included in the cochrane review above. the review received an amstar score of . the third study was a review by fung et al, which considered only aromatherapy as a non-pharmacological intervention. the review was judged to have moderate methodological quality (amstar score= ). after per- forming a comprehensive search in several electronic databases, studies were identified, with a total of patients in different settings, including long-term care (ltc) homes, clinical centres and general and old age psychiatry. in addition to the trials included in the above cited cochrane review, the review by fung et al included one randomised trial which was excluded in the cochrane review because the route of administration was not reported and there was no mention of the type of the aromatherapy, in addition to five controlled clin- ical trials. – moreover, the fung et al review did not include the two trials that were evaluated in the cochrane review. the controlled clinical trials could not be included in a meta-analysis because of heterogeneity. the review highlighted the methodological limitations of the studies and reported promising results of aroma- therapy. online supplementary etable describes the type of interventions, the outcomes and the results of the primary studies included in the aromatherapy reviews. massage therapy massage and touch therapy have been proposed as non- pharmacological interventions to be used in dementia to offset manifestations of cognitive decline and beha- vioural disturbances, including related psychological problems, such as depression and anxiety, and to improve quality of life. two reviews were identified. the first was a cochrane review that was included in the review by o’neil et al. this review assessed the efficacy of massage and touch therapy for the treatment of bpsd. its last search strat- egy was launched in . the aim of the overview was to evaluate the effects of a range of massage and touch therapies on conditions associated with dementia, such as anxiety, agitated behaviour and depression, to identify any adverse effects and to provide recommendations for future trials. the review considered only randomised trials. the primary outcome measures were changes in the frequency and severity of various types of agitated behaviour, as observed by staff or investigators (short- term and long-term using any rating method), and the abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ emotional well-being and the quality of life of the patients (rated by staff, investigators and/or patients themselves using any method). remington ( ) assessed the effect of music and massage in nursing home residents with dementia (ad, multi-infarct dementia or senile dementia). the participants were randomly allocated into four groups: calming music, hand massage, simultaneous calming music and hand massage and no intervention. the inter- vention lasted min and was given to each patient once. the efficacy of treatment on ‘agitation level’ was evalu- ated with a modified version of the cmai administered by trained research assistants who were blinded to treat- ment allocation when possible. the method of randomi- sation was unclear and to conceal allocation, sealed envelopes, without further explanation, were used. however, patients could have been excluded after alloca- tion (if they had a cmai score of at baseline) and con- sequently the study was considered to have high risk of selection bias. the trial found that agitated behaviour decreased, more so in the group receiving hand massage than in the group receiving no treatment. this treatment effect was consistently found, compared to baseline, for mea- surements taken during treatment, immediately after treatment and -hour after treatment, and it was practic- ally identical among the three groups receiving treat- ment (hand massage, calming music or both). the mean agitation score was in favour of massage therapy immediately after treatment (md . ( . to . )) and -hour after treatment (md . ( . to . )). the second review by moyle et al conducted a search in databases in october . the authors identified studies that evaluated massage therapy for the treat- ment of behavioural disturbances in patients with dementia, but only one study with a high methodo- logical score, using the validity rating tool, was identi- fied. the included study, performed by holliday- welsh, was a prospective before–after study in which participants ( women and men; mean age years) from two skilled nursing facilities in northeastern minnesota, usa, were enrolled. patients were cognitively impaired and had a history of agitated behaviour confirmed by the facility staff. the interven- tion consisted of a -min to -min massage of the upper extremities (including the head, shoulders and hands), undertaken by a physical therapy assistant, during a -hour period identified by caregivers as the time the participant was usually most agitated (indivi- dualised for each participant). the outcomes of interest were assessed with a scale that used the five behavioural symptoms from the minimum data set; ( ) wandering; ( ) verbally abusive behavioural symptoms; ( ) physically abusive behavioural symptoms; ( ) socially inappropri- ate/disruptive behaviour and ( ) resistance to care. methodologically, the study was considered at high risk of selection and performance bias given the study design and the nature of the intervention. in addition, it was unclear whether the outcome assessor was blinded. massage therapy was significantly associated with improvement for four of the five outcomes examined, including wandering ( . vs . , p< . ), verbally agi- tated behavioural symptoms ( . vs . , p= . ), physically agitated behavioural symptoms ( . vs . , p< . ) and resistance to care ( . vs . , p= . ). online supplementary etable describes the type of interventions, the outcomes and the results of the primary studies included in the massage therapy reviews. light therapy rest-activity and sleep-wake cycles are controlled by the endogenous circadian rhythm generated by the supra- chiasmatic nucleus (scn) of the hypothalamus. degenerative changes in the scn appear to be a bio- logical cause of circadian rhythm disturbances in people with dementia. in addition to the internal regulatory loss, older people (especially those with dementia) experience a reduction in sensory input, due to less visual sensitivity to light and less exposure to bright environmental light. evidence suggests that circadian rhythm disturbances may be reversed by stimulation of the scn with light. four reviews considered the use of bright light therapy to treat behavioural problems in patients with dementia. the first was a cochrane review (amstar= ) with the aim of evaluating the effectiveness of light therapy to improve cognition, activities of daily living (adls), sleep, challenging behaviour and psychiatric distur- bances associated with dementia. the search strategy was launched in january . the included studies were randomised trials that compared any bright light therapy, including dim red light or dim, low-frequency blinking light < lux, to usual care. the primary outcome measures included cognition (global or single domain, eg, memory), adls, sleep-wake disturbances, challenging behaviour (eg, agitation), psychiatric distur- bances (eg, depression) and adverse effects. secondary outcomes were rates of institutionalisation and overall cost of care. the authors identified studies, but stated that three of the studies could not be included in the analyses either because the data were insufficient or could not be retrieved from the trial authors. only four of the included studies considered challenging behav- iour as an outcome, but the sample sizes were limited and the outcome measures were not the same across the studies. – a meta-analysis of challenging behaviour, however, was performed and no substantial heterogen- eity was found, although the results were not statistically in favour of bright light therapy. the second review aimed to identify which non- pharmacological interventions were most effective for bpsd in ltc. only two studies were included in the review (which were already included in the forbes review ), but were not assessed in detail. the review received four points in the amstar rating system. abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ the third review aimed to assess the role of physical environment in supporting person-centred dining in ltc. only one study that evaluated the effect of ambient bright light in activity and dining areas among institutionalised people with dementia was identified. this study was not included in the previous two reviews. the fourth review that addressed the effectiveness of environment-based interventions for people with ad or dementia identified a cluster-unit crossover trial. the trial was conducted in two geriatric units in a state-oper- ated psychiatric hospital and in a dementia-specific resi- dential care facility in oregon, usa, and enrolled older adults with dementia to evaluate the effectiveness of ambient bright light therapy, delivered through a high-intensity, low-glare lighting system installed in the public areas of study units at both sites, at reducing depressive symptoms. each lighting condition was pro- vided for multiple -week periods in a predetermined sequence. the csdd was used to assess depressive symp- toms. results did not support the use of ambient bright light therapy as a treatment for depressive symptoms in people with dementia. online supplementary etable describes the type of interventions, the outcomes and the results of the primary studies included in the light therapy reviews. sensory garden and horticultural activities whear (amstar= ) investigated the impact of gardens and horticultural therapy on the mental and physical well-being of residents with dementia, in nursing homes and specialised dementia care facilities. this approach uses either ‘sensory’ gardens to stimulate the five senses (sight, vision, hearing, smell and touch), or plants and plant-related activities to improve well- being (horticultural therapy or therapeutic horticul- ture). eighteen studies were identified: ten were quanti- tative studies (two rcts (n= ), six pre-post studies, one crossover study, one prospective cohort study), seven qualitative and one used mixed methods. in one of the rcts, there was a non-statistically significant decline in verbal and physical aggression and non-verbal aggres- sion, and total cmai score (online supplementary etable ). gonzalez et al (amstar= ) examined the effects of sensory garden and horticultural activities in dementia care. sixteen studies were identified, including rcts (n= ), one of which was cluster randomised, pre-post studies, case studies and survey. in the smaller of the two rcts, verbal agitation significantly decreased in the outdoor horticultural group compared to the indoor horticultural group, while in the larger trial, the effect of participants in the horticultural group did not differ from the traditional activity group. (connell et al was included in both srs. ) online supplementary etable describes the type of interventions, the outcomes and the results of the primary studies included in the sensory garden and horticultural activities reviews. music and dance therapy music therapy is the application of music and/or its ele- ments (melody, rhythm, harmony, sound) by a qualified musical therapist, in order to support and stimulate various aspects of cognitive, emotional, social and phys- ical needs, such as expression, communication, learning and forming relationships. participants can passively listen to music or actively participate by singing, playing an instrument or moving. dance therapy is a psycho- therapeutic intervention that uses movement to ‘further the emotional, cognitive, physical and social integration of the individual’. six srs that evaluated music therapy, – and one review that assessed live singing to people affected with dementia, were identified. the number of included primary studies in the reviews varied from to , and the amstar scores of the reviews ranged from to . the review by ueda received the highest score (amstar= ) and included nine randomised trials and nine controlled clinical trials that evaluated one music-related experience or a combination of music-related experiences, such as singing, listening, performing, rhythmic exercising and improvising. uncontrolled before-and-after studies and case studies were excluded. participants were allocated to music therapy (mean of min/day, – days/week for weeks (range day to months)) or usual care for bpsd assessment. the music therapy comprised listening, – moving/ dancing, – singing/playing a musical instru- ment – and in some occasion was administered in combination with exercise and remin- iscence therapy. music therapy was effective in reducing behavioural symptoms ( rcts+ cts; participants) (smd= − . ( % ci − . to − . )), despite a moderate and statistically significant heterogeneity (i = %, p= . ). the same intervention achieved a statistically significant reduction on depression ( rcts+ cts; participants) (smd=− . ( % ci − . to − . ); i = %, p= . ) and anxiety (smd − . , % ci − . to − . ; i = %; eight studies; participants). whear et al investigated the effectiveness of mealtime interventions, including music, on bpsd in people with dementia in residential nursing homes or care homes. eleven studies were identified: one controlled trial, three before/after studies and seven repeated measure time series studies. the results of the studies were described narratively. one before/after study with participants found that music played at mealtime improved physical and verbal, aggressive and non- aggressive, behaviour using the cmai. seitz et al (amstar= ) identified rcts of non- pharmacological interventions, of which studies with participants evaluated music therapy for bpsd of dementia in ltc facilities. owing to the hetero- geneity of the studies (study design, patient populations, abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ interventions, treatment duration and outcomes mea- sured), the authors did not perform a meta-analysis. the behavioural outcome was measured either with a modified cmai, behavioural pathology in alzheimer’s disease rating scale (behave-ad) or the npi. in one study, the music therapy was performed with movement, in a group, for min, twice/week for weeks. in a second study, the music intervention lasted min, times/week for weeks. and in a third trial, the dur- ation and frequency of individual sessions were not spe- cified, but the therapy lasted weeks. two of the three studies employing music found a statistically sig- nificant difference between treatment and control groups, but all three were at risk of randomisation bias and two had unclear bias of incomplete outcome data. all the studies were included in ueda’s review. the review by mcdermott et al (amstar= ) searched medline, embase, psycinfo, cinahl, the cochrane library, web of science, journal of music therapy and nordic journal of music therapy and identified studies of which were rcts (the remaining were non-randomised controlled studies (n= ), before-and- after studies (n= ) and qualitative and mixed-method studies (n= )). two trials and the case–control study were already included in the reviews described above. three rcts (n= ), two of which were carried out by the same group, measured bpsd using either the npi or behave-ad. in one trial, the music therapy (patients and music therapist play musical instruments to express emotions and interact) was per- formed for min, times/week for -month, followed by a -month interruption, over months (raglio ). in another study by the same group, the music therapy (singing and body movement with music to stimulate communication) was administered for min, times over weeks. in the third trial, the therapy was exe- cuted for min, times/week for weeks (svansdottir ). mcdermott et al concluded that evidence for reduction of behavioural disturbance was consistent, but there were no high-quality longitudinal studies that demonstrated long-term benefits of music therapy. of note, five of the rcts included in the review were not included in the review by ueda et al. unlike the previous review, vasionytė and madison (amstar= ) provided a meta-analysis of the effects of music interventions (median= weeks; range – weeks) in patients with dementia, differentiating between different types of interventions (listening, active music therapy, recorded music, live music, selected music, individualised music, classical/relaxation music, popular/native music and group and individual interventions). this sr included studies comprised of rcts, – ccts and pre–post-test studies. the outcomes evaluated were behaviour (measured with the cmai, npi-q, multidimensional observation scale for elderly participants (moses), an agitation checklist or a behav- ioural chart), affect, cognition and physiology. there was no statistically significant effect on behaviour (effect size (es) . , % ci − . to . ; studies, n= ) or affect (es . , % ci − . to . ; studies, n= ), while cognition (es . , % ci . to . ; studies, n= ) and physiology (es . , % ci . to . ; studies, n= ) were affected. three of the rcts, and four of the controlled trials, in this review, were also included in ueda et al. the review by wall and duffy included studies that were presented narratively. the review was of low quality (amstar score ). the review by chatterton et al evaluated the efficacy of ‘live’ singing to people with dementia for cognitive, behavioural, physiological and social outcomes. the study received an amstar score of . an additional sr that aimed to assess the role of the physical environment in supporting person-centred dining in ltc identified four non-randomised studies, with different designs, that evaluated the effect of music on the incidence of agitated behaviours during meal- times, among older adults with dementia, residing in special care units (scus). – the results of these studies showed that playing music during mealtime reduced the incidence of agitated behaviour. online supplementary etable a describes the type of interventions, the outcomes and the results of the primary studies included in the music therapy reviews. dance therapy two reviews evaluated dance therapy in patients with dementia. the first review’s objective was to evalu- ate the evidence concerning dancing interventions in physical and mental illnesses compared to other types of interventions or non-specific interventions. the review received points in the amstar scoring system and identified small studies reporting results from randomised trials of which only one considered patients with dementia. the trial that considered participants with dementia included participants (mean age years, sd . ; % women) in a nursing home and evaluated the efficacy of dance and movement therapy delivered in nine sessions, lasting to min each, once-a-week. the outcome measures included the word list savings score, the clock drawing test (for visual spatial ability), the cookie theft picture description task from the boston diagnostic aphasia test and the nurses’ observation scale for geriatric patients (nosger). the results did not show any important differences in favour of dance therapy. the second sr aimed to evaluate the effects of dance (movement) therapy and ballroom dancing, compared to usual care, for adults with physical and mental ill- nesses. the review received only one point on the amstar scale and identified only one study that investi- gated the intervention in a population affected by dementia and which was also included in the review above. abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ snoezelen multisensory stimulation therapy snoezelen multisensory stimulation therapy (smst) comprises multiple stimuli and is aimed at stimulating the primary senses of sight, hearing, touch, taste and smell. the intervention is provided in specially designed rooms, which provide diverse sensory-stimulating effects/material including music, aroma, bubble tubes, fibre optic sprays and moving shapes projected across walls. smst was investigated by two reviews. the first was an overview of reviews, and its evidence for smst was based on a cochrane review that included three studies. the inclusion criterion was any rando- mised trial that assessed the efficacy of smst and/or multisensory stimulation to treat people over years of age suffering from dementia. the outcomes of interest included behaviour, mood, cognition, physiological indices and client–carer communication, as well as short- term effects measured during the sessions or postses- sion, and longer term benefits measured postinterven- tion and at follow-up. the three included primary studies evaluated a total of patients with dementia, aged or older. the first was a randomised trial that compared eight stan- dardised multisensory programmes with eight standar- dised activity sessions. both programmes were implemented on a one-to-one basis, twice-a-week, with each session lasting min. fifty participants ( women, mean age ) with a diagnosis of ad (n= ), vascular dementia (n= ) or a mixed diagnosis (n= ) were enrolled. the objectives of the trial were the imme- diate effects of smst on the behaviours of older people with dementia, the carryover effects of smst on mood and behaviour to day-hospitals and home environments and the maintenance effects of smst on mood, behav- iour and cognition over time. the effects of smst on behaviour were measured by interact. the gener- alisation effects were measured by three outcome mea- sures: the carryover effect of day-hospitals was measured with the general behaviour and community skills sub- scales of rehab (baker ); the carryover effect to home, at midintervention and postintervention, was measured with the behaviour and mood disturbance scale (bmd) and the behaviour rating scale (brs) of the clifton assessment procedures for the elderly (cape). the maintenance effect (at the -month postin- tervention follow-up) on behaviours and cognition were measured by rehab, bmd, the cognitive assessment scale (cas) of cape and mini-mental state examination (mmse). no significant effects on any scale of behav- ioural symptoms were found either immediately after intervention or at -month follow-up. the second study was a quasi-experimental pre-test and post-test design with cluster randomisation per- formed at a ward level, which compared a -month, -hour individualised care plan that was integrated with smst, with -month usual care. the study included participants diagnosed with ad, vascular or mixed dementia from three different countries (uk= day patients, the dutch sample= inpatients. swedish sample= inpatients). there was a significant group dif- ference in the mean baseline mmse scores (data from the uk and the dutch only) between the smst group ( . ) and the control group ( . ) (p= . ). all partici- pants attended eight, -min sessions on a one-to-one basis according to their group assignment. the sessions were conducted by the same key workers throughout the study period. the following outcomes measured the short-term effects of smst on behaviours: ( ) interact ( -item) measured behaviours during the sessions; ( ) interact ( -item) measured behaviours min before and min after the sessions and ( ) behaviour observation scale for intra-mural psycho- geriatrics (gip) measured behaviours that were video- taped during the sessions in the netherlands sample. the study showed significant effects on two behav- ioural items of interact during sessions: enjoying oneself (md=− . ; % ci (− . to − . ); z= . , p= . ) and bored/inactive (md=− . ; % ci (− . to − . ); z= . , p= . ). there were no longer term treatment effects of the integrated smst-care pro- gramme on behaviour. the third study assessed the effects of smst when integrated into -hour daily care on nursing home residents with dementia. a total of patients with moderate or severe dementia and care dependency were recruited from six old age psychiatry wards for pre-test. a cluster randomised design was used to assign the wards to either experimental (integrated smst-care programme) or control (usual activity) conditions. twelve old age psychiatry wards in six nursing homes (out of homes) were recruited to the study. at base- line, participants (woman %, mean age ) were recruited and were assigned to experimental or control conditions according to the ward in which they stayed. for the experimental group, participants were given a stimulus-preference screening in weekly one-hour ses- sions to identify their preferred sensory stimuli. subsequently, individual smst-care plans were develo- ped for each participant based on their life history, stimulus preference and discussions from multidisciplin- ary conferences. certified nursing assistants (cnas) used multisensory stimuli in the -hour care of the experimental participants. participants in the control group were provided with individual usual care. a minimum period of months was used for experimental and control conditions. the short-term effects of the integrated smst-care programme on behaviours were measured using a modi- fied version of interact, in which six items were deleted and eight new items were added during morning care sessions. the long-term effects of inte- grated smst-care programmes on behaviours, mood and interaction were evaluated at the -month follow-up using the eight items of gip for apathy, anxiety and disoriented behaviours, the dutch version of cmai for agitated behaviours, physically non-aggressive abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://bmjopen.bmj.com/ behaviour and verbally agitated behaviours and the cornell scale for depression for depressive symptoms. in terms of behavioural disturbances, when compared to the control, the -hour integrated smst-care pro- gramme showed a significant effect on two behav- ioural items of interact during sessions: enjoying self (md=− . ; % ci (− . to − . ); z= . , p= . ) and bored/inactive (md=− . ; % ci (− . to − . ); z= . , p= . ). there were no longer term treatment effects of the integrated smst-care pro- gramme on behaviour. in terms of mood, there were sig- nificant improvements in one mood item of intreact during sessions: the smst group was happier and more content than the control group (md=− . ; % ci (− . to − . ); z= . , p= . ). there were no sig- nificant effects of the -hour integrated smst at postin- tervention. the fourth review scored in the amstar evaluation and investigated different non- pharmacological interventions including smst for the treatment of bpsd. the review identified only one study that was included in the above cited review. online supplementary etable describes smst-based interventions, outcomes and results of the primary studies included in the reviews. transcutaneous electrical nerve stimulation tens is a simple, non-invasive, non-pharmacological intervention commonly used for pain control and occasionally for neurological and psychiatric conditions such as drug/alcohol dependency, headaches and depression. tens consists of attaching electrodes to the skin and applying an electrical current, whose fre- quency can vary from low (< hz) to high (> hz). two reviews were identified. one review that evaluated current treatment options for sleep disturbance in ad scored in the amstar evaluation. different non- pharmacological interventions were considered, includ- ing bright light therapy, behavioural and multifaceted interventions (combined increased daytime physical activity and exercise, decreased daytime in-bed time, daily sunlight exposure, structured bedtime routine and decreased night-time noise and light) and tens. for the latter intervention, only one randomised trial of nursing home residents was identified. the study did not evaluate behavioural outcomes. a cochrane review that was included in o’neil’s review was also considered. the review was focused only on rcts that enrolled inpatients and outpatients of any age (with or without caregivers), with a diagnosis of dementia. the outcomes of interest included visual and verbal short-term and long-term memory, semantic verbal fluency, circadian rest-activity rhythm, affect/ depression, level of independent functioning, adverse effects and dropouts due to inefficacy. the review identi- fied and included nine trials that were performed in japan and the netherlands. the dutch studies were per- formed by the same group of authors. – these studies were randomised placebo-controlled trials, and the participants were chosen from a group of – residents of a residential home for older people. the age range of the participants was ∼ to mid- years and were mostly women (> %). all participants met nincds-adrda criteria for the clinical diagnosis of probable ad; most participants had early ad, but some had moderate ad. participants generally had scores of or less on the hamilton depression rating scale. all included studies used a similar tens protocol, except the most recent one published in , which addressed cranial electrostimulation. the remaining three publications were performed by a group of authors from japan and describe the results of the same study. the study design was a double- blind crossover and, in contrast to the dutch studies, participants were thought to have multiinfarct dementia or ad and were selected on the basis of irregular sleep- wake patterns in conjunction with nocturnal behaviour disorders and/or dementia. twenty-seven participants completed the study. the intervention used a hess- stimulator with rectangular pulse waveforms at a fre- quency of – hz, a pulse duration of . ms maximum, µamps and an amplitude of – v. the outcomes evaluated were sleep disorder, motivation, behaviour disorder, intelligence, emotion, language, neurological signs, subjective symptoms and activities of daily life. all of these were rated on a five-point scale: absence of the related symptom, ; mildly disturbed, ; moderately disturbed, ; markedly disturbed, and severely disturbed, . of the nine studies, only three could be included in a meta-analysis for a combined total of participants. two of these studies were con- ducted in the netherlands, and one was conducted in japan. results, however, were inconclusive. it should be noted that none of the other studies mentioned adverse effects, although it is unclear if adverse events were monitored. online supplementary etable describes tens-based interventions, outcomes and results of the primary studies included in the reviews. cognitive/emotion-oriented interventions cognitive stimulation cognitive stimulation involves a variety of pleasurable activ- ities, such as word games, puzzles, music, cooking, garden- ing and discussing past and present events, and is usually carried out by trained personnel with small groups of four to five people. it lasts for min, minimally times/week. it is based on reality orientation, which was developed in the s to counteract the confusion and disorientation of older people during hospitalisations. seven reviews were identified. – woods (amstar score= ) was a cochrane review that identified rcts that used cognitive stimu- lation for people with dementia. the authors stated that most of the studies were of low quality, but that gener- ally, investigators had taken measures to protect against abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ the risk of allocation concealment bias. in a meta-analysis of three trials – (n= participants), the intervention had no effect on problem behaviours (smd − . , % ci − . to . ; i = %, p= . ). the review by aguirre et al in (amstar score= ) evaluated the effectiveness of cognitive stimula- tion in patients with dementia and identified nine rcts. three trials that considered behaviour-related outcomes were identified. these trials were already included in woods’s review and reached the same conclusion. alves et al in (amstar score= ) identified four rcts of cognitive interventions for ad patients. only one trial that measured bpsd as an outcome was identified. the study population was composed of patients with a score between and on the mini mental state examination, no history of antidepressant medication and a total npi score > points arising from at least domains of behaviour. the cognitive stimula- tion intervention was administered individually and focused on a set of tasks requiring executive functions and working memory. the study found a statistically sig- nificant reduction of bpsd (md − . ; % ci − . to − . ). the study of carrion et al in (amstar score= ) found rcts of cognition-oriented interven- tions (reality orientation and skills training) for demen- tia sufferers. challenging behaviour was evaluated in only two trials (n= and n= , respectively) that employed the two categories of cognitive interventions, using the npi and the revised memory and behaviour problems checklist. in both rcts, the intervention group had a smaller increase in change from baseline compared to the control group. owing to the hetero- geneity among the studies, the authors decided a meta-analysis was inappropriate. yu (amstar= ) included studies ( rcts, ccts and before–after study), in addition to case studies and undefined studies, all of which investigated different types of cognitive interventions for ad and dementia. the only study, a cct (n= with early-stage ad), that evaluated the effect of cognitive stimulation on behavioural disturbances, showed larger improve- ment than the cognitive training group. olazarán et al in (amstar= ) identified rcts of diverse types of non-pharmacological interven- tions for ad patients and examined problem behaviour, mood, qol, cognition, adls, mechanical restraint and institutionalisation of patients and mood, psychological well-being and qol of cgs. the authors performed a meta-analysis of three low-quality rcts to determine the effect of cognitive stimulation on problem behaviour and mood. there was a non-statistically significant reduction in problem behaviour (group session cognitive stimula- tion (es= . ; % ci . to . )). the primary study by baines et al was included in the woods review above, while the study by robichaud et al was included in the review by kim which examined behaviour man- agement techniques described below. thirty-three rcts, employing cognitive interventions for cognitively impaired individuals (dementia and mild cognitive impairment), were identified in kurz et al (amstar score= ). twelve of these trials examined behavioural disturbances, but only three studies found a significant effect of the intervention. zientz et al (amstar score= ) identified three studies (two rcts and one rct or cct; n= partici- pants) of caregiver-administered cognitive stimulation for individuals with ad. one of the randomised trials (n= ) found that individuals who received the interven- tion displayed fewer behavioural problems compared to those who had not been given the intervention. online supplementary etable describes cognitive stimulation-based interventions, outcomes and results of the primary studies included in the reviews. reminiscence therapy reminiscence therapy is a non-pharmacological inter- vention that involves the discussion of past experiences, events and activities with family members or other groups of people. the intervention uses materials such as photographs, books, old newspapers and familiar items from the past to inspire reminiscences and facili- tate people to share and value their experiences. three reviews assessed reminiscence therapy as a non- pharmacological intervention to treat agitated behaviour in patients with dementia. the first review received the highest score (amstar score of ) and considered all non-pharmacological interventions to treat relevant outcomes in patients with dementia. the review identified two small studies involv- ing a total of patients performed in care facili- ties. the npi and the clifton assessment procedures for the elderly-behavioural rating scale (cape-brs) were used to measure bpsd. seitz et al reported that this outcome was unaffected in one study, while the effect of the intervention was unclear in the other study. the second review was focused only on reminis- cence therapy as a sole treatment of behavioural out- comes for patients with dementia. the review was of low methodological quality (amstar score= ). the results were presented in a narrative synthesis. the review included five trials with a before–after design, contain- ing patients affected by dementia. the studies con- sidered different interventions. two studies (one with participants (haight ) and the other with par- ticipants (morgan )) assessed a life review or story approach and found significant improvements in depression, communication, positive mood and cogni- tion. the third study ( participants (lai )) evaluated specific reminiscence, which produced a life-story book using personalised triggers for each person’s life history. no significant differences were observed between groups except for outcomes such as well-being and social engagement. the remaining two trials (involving participants ) and partici- pants ) evaluated individual reminiscence approaches. abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ one study used six weekly sessions, which focused on a particular life phase, such as childhood or family life, while the other study used a basket of visual and audi- tory activities, based on five themes, such as musical instruments, designed to stimulate reminiscence. no sig- nificant differences were observed between the groups in terms of behavioural outcomes. the third review focused on whether reminiscence therapy could alleviate depressive symptoms in adults with dementia, but its methodological quality was extremely low (amstar score= ). four primary studies with a pre–post-test design were included and were described individually, three of which were randomised trials and one of which comprised a single group. online supplementary etable describes reminiscence therapy interventions, outcomes and results of the primary studies included in the reviews. validation therapy validation therapy is based on the general principle of the acceptance of the reality and personal truth of another person’s experience and incorporates a range of specific techniques. validation therapy is intended to give the individual an opportunity to resolve unfinished conflicts by encouraging and validating the expression of feelings. the specific interventions and techniques are based on a synthesis of behavioural and psychothera- peutic methods. the approach can be used as a struc- tured therapeutic activity in a group setting, usually lasting several weeks, or it can be conducted individually as part of an ongoing approach to facilitate communica- tion as a supplement to group work. the validation therapy techniques comprised non-threatening, simple concrete words; speaking in a clear, low and empathic tone of voice; rephrasing and paraphrasing unclear verbal communication; responding to meanings through explicit and implicit verbal and non-verbal communica- tion and mirroring verbal and non-verbal communication. one cochrane review that evaluated the effectiveness of validation therapy to reduce bpsd was identified (amstar score= ). the review included only rando- mised trials of participants over years of age, diagnosed with alzheimer’s disease, dementia or other forms of cog- nitive impairment, according to icd , dsm iv or com- parable criteria. the outcomes of interest were cognition, behaviour, emotional state and activities of daily living. the review, updated in , included three randomised trials (n= participants). – another sr that evaluated the effective characteristics of residential ltc settings for people with dementia identified one trial that was included in the cochrane review. primary studies among the primary studies, the first study (n= ) was performed in a nursing home and used an intervention ( min once-per-week for weeks) that included activ- ities such as discussion of a previously agreed subject, singing and movement, followed by a closing ritual and refreshments. behaviour was measured with the behaviour assessment tool. the control groups con- sisted of reminiscence therapy, which followed the guid- ance of a reality orientation manual (cues such as flannel boards and calendars were used to promote orientation) and usual care. at weeks, validation therapy was associated with a decrease of problem beha- viours (md=− . , % ci − . to − . ; p< . ; based on an analysis of participants who completed the study). the second study enrolled patients with moderate-to-severe disorientation of which had a diagnosis of dementia. the study was performed in a ltc institution in the usa. the validation therapy was performed twice-a-week for months; details of the val- idation therapy were not given. agitation was measured using the minimal social behaviour scale (msbs; farina ) where a reduction in score indicated improve- ment. no effects on behaviour were detected. the last study was carried out in ‘skilled-care nursing homes’ in the usa. in this study, patients were included if they had at least a moderate level of demen- tia (assessed by the short portable mental status questionnaire—spmsq—and the validation screening instrument) and displayed problem behaviours, such as physical aggression. validation therapy (four meetings lasting min per week for weeks) was composed of groups divided into four sessions of – min each. the first session included introductions, salutations and singing. the second session involved conversation regarding a subject of interest; recalling past events was promoted. the third session comprised an activity pro- gramme and singing or poetry. the fourth session involved refreshments and individual goodbyes. agitation was measured with the cmai, carried out as cmai(n) nurse observed and cmai(o) non-participant observed. the authors reported that depression (moses) decreased at months (md − . , % ci − . to − . ; p= . , based on an analysis of partici- pants ( out of ) who completed the study. online supplementary etable describes validation therapy interventions, outcomes and results of the primary studies included in the reviews. simulated presence therapy spt involves the use of video/audiotapes made by family members containing scripted ‘telephone conver- sations’ about cherished memories from earlier parts of a person’s life, in an effort to stir remote memory, improve behavioural symptoms and enhance the quality of life among people with dementia. two srs were identified. the first review was written by only one reviewer and scored on the amstar scale. the review was aimed at investigating the effectiveness of spt for challenging abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ behaviours in dementia. the review searched pubmed, psycinfo and the web of science, conducted hand searches of relevant articles and considered for inclu- sion, studies that reported pre-test and post-test, or pre-test and during-test data for spt for challenging behaviours. the spt consisted of audio or videotapes prepared by a spouse, family members, the caregiver, a psychologist, a surrogate or researchers. of the seven included primary studies, only the data from four could be pooled, showing an overall mean effect of . , with a % ci of . to . , but with statistically significant heterogeneity (i = %, p= . ). the second review examined the efficacy of any non- pharmacological intervention (including spt) to reduce bpsd in patients with dementia. after searching the databases medline, cinahl, psycinfo, embase, dissertations international and the cochrane database of systematic review, from to may , the review identified only two studies that were included in the zetteler review above. online supplementary etable describes spt, outcomes and results of the primary studies included in the reviews. behavioural management techniques there is a multitude of behavioural interventions that constitute behavioural management techniques, which include behavioural or cognitive–behavioural therapy, functional analysis of specific behaviour, individualised behavioural reinforcement strategies, communication training and other therapies such as habit training, pro- gressive muscle relaxation and token economies. these behavioural interventions can be realised either with the patient or by training caregivers to perform the interven- tion with the patient. one overview of reviews and four srs that considered behavioural interventions were identified. the overview of reviews by o’neil identified three srs, and after performing additional searches of primary studies, included nine randomised trials. – the overview authors’ conclusions were in support of behavioural management techniques as effective interventions for behavioural symptoms of dementia although they admit- ted there were mixed results. in addition, the authors highlighted some concerns regarding the variety of spe- cific interventions and methodological limitations in many studies and advocated additional research with carefully assessed outcomes. a health technology assessment (hta) report that aimed to evaluate the clinical and cost-effectiveness of sensory, psychological and behavioural interventions to manage agitation in older adults with dementia, system- atically searched and identified four randomised trials. – the intervention in all four trials was caregiver-based. the hta authors concluded that the evidence in favour of the behavioural management tech- niques was limited. a cochrane review aimed to assess the effects of functional analysis-based interventions for people with dementia (and their caregivers) living in their own home or other settings and identified randomised trials. the development of the intervention was driven by various approaches and theories, including knowl- edge and/or training approaches, the stress-coping model, the progressively lowered stress threshold model and problem-solving approaches. in addition, the time frame in which the intervention was delivered varied from days to months and the number of sessions used to deliver the intervention varied widely, from to sessions to more than sessions. of the studies included, – – the authors were able to meta-analyse data from trials, of which one contained unpublished data. there were no signifi- cant reductions in the incidence of challenging beha- viours reported postintervention in four family care studies (smd . , % ci − . to . , p= . , n= ). among rcts of diverse types of non- pharmacological interventions for ad patients, identi- fied by olazarán (amstar score= ), the authors performed a meta-analysis of three low quality rcts of behavioural interventions (analysis and modifi- cation of antecedents and consequences of behaviour) and found a statistically significant reduction in problem behaviour (es= . , % ci . to . ; trials; n= ). the same authors carried out another meta-analysis of four low-quality rcts of care staff train- ing in behavioural management and found a reduction in problem behaviour (es= . , % ci . to . ; trials; n= ). two primary studies examined emotion-oriented care. the first study was a rct of nh residents (n= older residents with ad, mixed ad and vascular demen- tia and dementia syndrome; mean age ). the inter- vention of emotion-oriented care was associated with less anxious behaviour in the group of residents who needed less assistance/care compared to similar residents in the usual care group. the second study was a cluster ran- domised study of residential care homes (n= homes; n= residents). the authors reported that there was no statistically significant effect of the intervention on any behavioural outcome, including behavioural pro- blems. teri was included in the hta; gormley and teri were included in the brodaty review; gonyea was included in reviews in behaviour management techniques and mccallion and teri were included in eggenberger . eggenberger (amstar score= ) aimed to evaluate interventions that were designed to enhance communication or interaction in dementia care, in any setting. review authors identified studies ( rando- mised trials, controlled clinical trials and before– after studies) that focused on communication training for staff in institutions and family caregivers at home. in institutional settings, the results on challenging behav- iour, of residents with dementia, were not consistent. abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ four studies reported a significant reduction of challen- ging behaviour. mccallion et al, for instance, demonstrated a decrease of physically aggressive behav- iour ( . (sd . ) to . (sd . ), p< . )) and a reduced mean occurrence of verbally aggressive behav- iour in patients with dementia ( . (sd . ) to . (sd . ), p< . )). in addition, one trial demon- strated a significant decrease of residents’ agitation during care routines (f( . = . , p< . )). conversely, three studies reported no effect on challenging behaviour of people with dementia. – only one trial was included in the brodaty review. kim et al conducted a review to assess the effective- ness of occupational therapy on behavioural problems and depression in patients with dementia. medline, cinahl, proquest and the cochrane library were searched up to the end of march . the amstar score was . the authors defined occupational therapy as an application of ‘activity analysis, caregiver training, sensory stimulation, behaviour control skill teaching, physical and social environmental modification, cogni- tive training, and purposeful activity’. the review identi- fied nine randomised trials with a total of participants. on the basis of the type of intervention, the authors categorised four studies as sensory stimulation, three studies – as functional task activities and two studies as environmental modification. the authors performed a meta-analysis of the trials with occupational therapy-based sensory stimu- lation and found an es of . ( % ci . to . ; participants; no significant heterogeneity). no sig- nificant effect was detected for ot-based functional task activities ( . , % ci − . to . ; participants) or environmental modification ( . , % ci − . to . ; participants). primary studies overall trials were evaluated in the reviews that were included. except for one study performed in taiwan, all the studies were carried out in europe, the usa and australia. thirteen studies were performed in family care settings. – three studies with a total of residents were conducted in care homes. finally, one study was located in an assisted living setting and the other in a hospital setting. characteristics of the interventions varied greatly across the trials. fifteen trials were focused on enhan- cing communication skills in family and formal care- givers. eighteen trials focused on functional activity of which four were described as a behavioural management intervention. the intervention in one trial involved care- giver training on verbal or non-verbal communication focused on activities of daily living. another trial was dedicated to teaching participants the basic technique for progressive muscle relaxation. time delivery of the intervention also varied widely. however, as noted by moniz-cook, the intervention delivery was determined by setting: the interventions in care homes were pro- vided weekly and lasted for months. in one family care study, the intervention was provided in just ses- sions over weeks. follow-up data varied from a few weeks to months. setting-based description family care: in this setting, family caregivers assisted people with dementia at home, with or without support from formal caregivers, healthcare workers and adult day care centres. thirteen trials were conducted in a family care setting. – six of these trials investigated an intervention that was focused on enhancing communication skills of the care- giver. the duration of the intervention ranged from weeks to months. the number of weekly sessions administered were, according to a classification pro- posed by moniz-cook , high (> session) in three trials, moderate-high ( – sessions) in one trial, moderate ( to sessions) in one trial and minimal ( to sessions) in one trial. the partici- pants who delivered the interventions varied from trial to trial: occupational therapists; trained nurses or social workers; professionals specialised in the reach programme; healthcare professionals super- vised by an old age psychologist; psychologists or trial investigator together with an experienced nurse. of the trials in the family care setting, investi- gated a behavioural intervention that was focused on providing support to the caregiver. the interventions lasted from weeks to months, with the number of sessions that varied from to sessions, with home visits and associated with or followed by tele- phone contacts. overall, the intervention dosage was high for three trials, medium-high in one trial and moderate in one trial. the interventions were delivered by different healthcare experts: commu- nity mental health nurses; therapists; occupational therapists; community consultants trained by an old age psychologist. the remaining two trials evaluated behavioural man- agement techniques. teri compared the inter- vention consisting of eight weekly and three biweekly sessions (high-intensity intervention) with pharmaco- logical interventions or placebo. the intervention was provided by a therapist with a master’s degree and -year clinical experience, but was not reported in detail. the postintervention evaluation started at months, and the follow-up lasted beyond months. the second study did not completely describe the intervention for behav- ioural management. the intervention was delivered in four sessions (moderate intensity) over weeks by the trial investigator. in terms of results, no statistically significant change in the incidence of challenging behaviours was observed in any of the studies. moniz-cook meta-analysed data of four studies (n= ), but did not find any difference abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://bmjopen.bmj.com/ among the groups (smd . , % ci − . to . , p= . ; i = %). at follow-up of months, two studies did not show any significant effect of behav- ioural management techniques. when the frequency of challenging behaviours was examined, none of the studies detected a significant dif- ference even when a meta-analysis, using the data from studies, was performed (smd − . , % ci − . to . ). assisted living: in this setting, people with dementia lived in a residence, did not require full-time nursing care, but needed assistance with some adls, such as bathing, dressing and eating. family members could still act as intermittent caregivers during visits by providing different types of support for adls, instrumental adls (eg, laundry washing, room cleaning, transportation to a doctor’s office), socioemotional support (eg, talking, reminiscing, socialising), monitoring care provision or advocating. one study evaluated a behavioural man- agement intervention to improve caregiver training to manage residents with dementia. the intervention intensity was medium-high, delivered by a clinical psych- ologist and graduate nursing students who performed two half-day group workshops and four individualised sessions with a follow-up months after the termination of the intervention. results for residents showed a statis- tically significant effect, in intent-to-treat analyses, in favour of the star-caregivers (star-c) intervention, general behavioural disturbance (measured by the revised memory and behaviour problems checklist (rmbpc), npi and abid) and depression. residential care: this setting referred to assisted living residences and nursing homes. the latter included facil- ities for people with dementia who needed significant nursing care. three cluster randomised trials were con- ducted in residential care with a total of residents. in residential care sites across metropolitan areas in sydney (australia), chenoweth et al examined the effi- cacy of person-centred care versus usual care. the inter- vention was a high-intensity, person-centred care, based on the needs-driven model in which staff, selected by managers, administered training sessions to caregivers. the topics covered during the sessions were derived from bradford university’s training manual. the dur- ation of the intervention was months, and the overall follow-up was months. the total number of residents enrolled was . during follow-up, the mean agitation score (measured with the cmai) in the person-centred care group decreased significantly, from . ( . ) at baseline, to . ( . ) at months (p= . ), compared to usual care in which agitation increased from . ( . ) at baseline to . ( . ) at months (p value not reported). in residential homes, fossey allocated residents to an intervention that consisted of training and support delivered to nursing home staff over months, focusing on person-centred care and skill development for the management of agitated behaviour in dementia. the comparison intervention was usual care. the high-intensity intervention was delivered during the whole period of follow-up ( months) by a psychologist, an occupational therapist or a nurse super- vised weekly by the trial investigators. the study’s main outcome measure was mean levels of agitated and dis- ruptive behaviour measured with the cmai, but no sig- nificant difference between the groups was detected. in residential homes, proctor allocated patients to a staff-based intervention or usual care. the intervention, of high-medium intensity, con- sisting of training on “psychosocial management of residents’” behavioural problems, was delivered through seven, -hour seminars by members of the hospital outreach team and psychiatric nurse during the whole period of follow-up ( months). the semi- nars covered topics that the staff had identified to improve their knowledge and skills (eg, management of dementia, aggression, etc). the crichton royal behavioural rating scale was used to assess behav- ioural characteristics of residents ( =no problems, =severe problems). in addition, the geriatric mental state schedule and the diagnostic algorithm agecat (automatic geriatric examination for computer-assisted taxonomy) were used to assess the effect of the intervention on residents’ organic and depressive symptoms. despite the control group having mean scores on the crichton scale higher than the intervention group at follow-up, this differ- ence was not statistically significant (mean score − . (− . to . )). although the clustered trials reported different types of interventions, intensities, durations and follow-up times, moniz-cook et al attempted an analysis using two studies and found a significant reduction in behav- ioural disturbances (smd, − . , % ci − . to − . ; p= . ; i = %). online supplementary etable describes behavioural management technique-based interventions, outcomes and results of the primary studies included in the reviews. multicomponent interventions integrated interventions combining psychiatric and nursing home care collet (amstar score= ) carried out a sr in medline, psycinfo and pubmed to determine the efficacy of interventions that combined psychiatric and nursing home care in nursing home residents. the authors identified rcts (n= participants), retro- spective cohort study and prospective case studies. all the studies used tailored treatment plans that combined psychosocial, nursing, medical and pharmacological interventions. the results of the rcts were described narratively. three out of the four randomised trials reported an improvement in behaviour and mood, while abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ one trial found no difference among the groups (online supplementary etable ). combination of environmental sensory stimulation a sr that evaluated the effective characteristics of resi- dential ltc settings for people with dementia identified one controlled clinical trial. the intervention in this trial was provided in five nursing homes and consisted of agitated participants with dementia taking showers, agitated participants with dementia taking walks in an environment where natural elements such as large bright pictures coordinated with audio, including bird songs, bird pictures, the sound of water flowing gently, as well as food (such as banana, pudding and soda). the control group consisted of other agitated participants with dementia that received only usual care. agitation was measured with a modified version of cmai. the ana- lysis showed a significant decline in agitation in the treat- ment group with respect to the comparison group. combination of music and hand massage another review that aimed to assess the role of physical environment in supporting person-centred dining in ltc identified another trial that was not included in the previous reviews. this trial applied an experimental × repeated measures design and included residents with dementia living in three scus. participants were mostly women ( . %), with a mean age of . years (sd= . ). residents in the treatment group received each of three treatments (hand massage, favourite music and the com- bination of both) with each treatment lasting min; the control group did not receive any treatment. the cmai was used to measure agitation. the results showed that each single and combined treatment were effective in sig- nificantly decreasing agitation immediately following the intervention and one-hour postintervention. online supplementary etable describes multicom- ponent interventions, outcomes and results of the primary studies included in the reviews. other interventions exercise therapy the systematic search identified two reviews that evaluated the efficacy of only exercise as a therapeutic intervention. the review by potter et al received points in the amstar assessment and identified randomised trials that evaluated the effects of physical activity on physical functioning, quality of life and depression in older people with dementia. only four of these trials investi- gated depression as an outcome using four different rating scales (geriatric depression scale (gds ); montgomery-asberg depression rating scale (madrs); a dutch evaluation scale for older patients (subscale used) and the csdd) and two trials measured behav- ioural disturbances (npi and stockton geriatric rating scale). the review authors stated that the methods of ran- domisation were clear and adequate in six of the trials with only three of these also providing methods of allo- cation concealment; eight of the trials reported informa- tion regarding losses to follow-up and six trials declared intention-to-treat analysis. the first study, burgener , was a small trial (n= ) carried out in community-dwelling older people with dementia. the intervention was multimodal com- prising tai chi (sitting and standing; min, times-a-week for weeks) and cognitive–behavioural therapies. depressive symptoms were measured with the gds . the authors reported that at weeks of obser- vation, there were no statistical differences between the groups. the second study, rolland , was a larger trial (n= ) carried out in nursing homes. participants per- formed exercises including stretching, walking, strength, flexibility and balance training for min, times/week for weeks. depression was evaluated using the madrs. after months of observation, the madrs score ( . ± . ) was higher in the intervention group than in the control group ( . ± . ), but without any statistical difference. the third study was also a small study (n= ) con- ducted in a psychiatric hospital. the invention was com- posed of strength, balance and flexibility exercises with music, min daily for weeks. depression was mea- sured in older patients with the subscale beoordelingsschaal voor oudere patienten. at months follow-up, no signifi- cant difference in depressive behaviour was observed. the last study was a larger trial (n= ) that enrolled community-dwelling patients and their care- givers. the exercise intervention, for patients, comprised aerobic, endurance, strength, balance and flexibility training, min twice weekly, reducing to twice monthly, for weeks. caregivers were given training in behav- ioural management techniques. the csdd was used to assess depression. at a -year follow-up, the mean differ- ence was . ( % ci . to . ) and statistically sig- nificant in favour of the intervention. the four trials used different types of interventions, outcome measures and follow-up times that hindered the possibility of per- forming meta-analyses. the two randomised trials that considered behavioural disturbances used the npi and stockton geriatric rating scale, respectively. the second review by thuné-boyle et al received an amstar score of and included six studies comprising two small randomised trials (n= ), two prospective design and two repeated measures studies that examined the effect of exercise on bpsd. in the first trial (hokkanen ), the exercise intervention consisted of sessions of dance and rhythmic movement lasting – min, once-a-week. this trial was already discussed in the dance section. the second trial aimed to assess the efficacy of a home-based exercise intervention pro- gramme to improve the functional performance of abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ patients with ad. the intervention consisted of a daily programme of aerobic, balance and flexibility and strength training, given to patients and caregivers. depression and apathy were measured using npi and the csdd at and weeks. online supplementary etable describes exercise therapy, outcomes and results of the primary studies included in the reviews. animal-assisted therapy one review performed a comprehensive literature search in pubmed, embase and psycinfo to identify pertinent studies that evaluated the efficacy of animal- assisted therapy (aat) in older patients with dementia or other psychiatric disorders. the authors identified eligible studies of which recruited patients with dementia, but only studies investigated the effect of aat on bpsd. the design of the studies was as follows: case–control and repeated measures (eg, interrupted time series analysis) studies. overall, the authors con- cluded that aat may have positive influences on patients with dementia by reducing the degree of agita- tion and improving the amount and quality of social interaction. however, they advocated more research examining the issue of optimal aai duration, frequency of sessions and suitable target group. primary studies churchill et al included residents of three scus with dementia ( % women; mean age . years; dementia evaluated with bourke dementia rating scale). the authors administered pet-therapy visits during the difficult ‘sundown’ time to examine the effect on residents with a history of agitated ‘sundown- ing’ behaviour. the active group was exposed to -min interaction with an investigator and a dog, which amelio- rated agitated/aggressive behaviour measured with the agitated behaviours mapping instrument scale. however, the study did not report the p values. in addi- tion, the variability in resident response over time after the departure of the dog was not explored. the effect of dog-based aat was also evaluated in another special care unit. mccabe et al enrolled participants with dementia (women %; mean age . , range – years). the study introduced a resi- dent dog and agitated behaviour was measured using the nursing home behaviour problem scale. data were collected week before and for the first weeks after introduction of the dog. the authors reported a signifi- cant reduction in daytime behavioural disturbances among residents, but not during evening shift. in a small pilot study, richeson evaluated visiting therapy dogs in residents with dementia ( women; age range – years; dementia mmse mean score: . ; % with depression). the session with visiting therapy dogs lasted hour daily for weeks. agitated behaviour, measured with the cmai, decreased significantly after weeks and increased significantly after weeks washout subsequent to the end of aat. libin and cohen-mansfield assessed the efficacy of a robotic cat (necoro) and a soft toy cat in reducing agitated behaviour in nine women with moderate dementia in nursing homes. the intervention consisted of two, -min interactive sessions on different days. the robotic cat produced a significant increase in pleasure and interest, but did not reduce agitation. conversely, the soft toy cat significantly reduced agitation. motomura et al included women (mean age . years) residing in a nursing home and evaluated the efficacy of aat, consisting of two dogs visiting for hour, over four consecutive days, to reduce apathy or irritability. the outcomes were measured using the geriatric depression scale, physical self-maintenance scale and mmse. the intervention did not show any sig- nificant change on any of the outcomes evaluated. sellers et al included four residents with dementia to evaluate the efficacy of a visiting dog. agitation was mea- sured with the agitated behaviours mapping instrument and social behaviour observation checklist. the authors reported that the intervention reduced agitated behav- iour during treatment and increased observed social behaviour, but data and p values were not reported. dining room environment two small (n= ) pre-post studies included in whear’s review examined the effect of improved lighting and table-setting contrast in a dining room environment. one study (brush ; n= ) found a positive effect on problem behaviours using the meal assistance screening tool, while the other study found a statisti- cally significant reduction in daily agitation. special care units in a cochrane review, lai (amstar= ) examined scus for dementia individuals with behavioural pro- blems. scus are characterised by trained staff, special care programmes, an altered physical environment and involvement of families. this sr included one quasi-experimental study and seven observational studies (six prospective cohort studies and one prospective case– controlled study). the absence of randomised trials is likely a consequence of important practical and ethical issues in applying this methodology in older participants with dementia and behavioural problems. only one case- controlled study evaluated agitation and used npi and cmai to measure the outcome in participants with dementia. the results showed no significant changes in outcomes at months; however, there were small, but significant improvements in the npi score in favour of the scu group at months (wmd − . ( % ci − . to − . ), months (wmd − . ( % ci − . to − . )) and months (wmd − . ( % ci − . to − . )). the same study also evaluated the effect of scu on mood at months, and the results showed a small sig- nificant effect in favour of scu (wmd − . ( % ci − . to − . )). abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . /bmjopen- - http://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ discussion given the well-known negative side effects of commonly prescribed drugs to control behavioural disturbances (bpsd) in patients with dementia, non-pharmacological interventions have gained increasing attention in recent years as an alternative first-line approach to treat bpsd. this overview addresses the evidence supporting the effi- cacy of these interventions in community and residential care settings. we identified a number of srs, which often focused on single interventions although, in several instances, multicomponent interventions were also examined. with the present study, using the primary studies included in the srs, we have created a compendium of the types of non-pharmacological inter- ventions, including the component of each single inter- vention, the dosage (when available) and the duration of the treatment. in the absence of a validated taxonomy, we categorised the interventions according to the following classifica- tion: sensory stimulation interventions; cognitive/ emotion-oriented interventions; behaviour management techniques (further subdivided according to the recipi- ent of the intervention, ie, the person with dementia, the caregiver or the staff); multicomponent interven- tions and other interventions, such as exercise and animal-assisted therapies. among sensory simulation interventions, the only convincingly effective intervention for reducing behav- ioural symptoms (specifically agitation and aggressive behaviour) was music therapy. according to the most comprehensive review of music therapy, this treatment also reduced anxiety. however, the evidence supporting the effectiveness of music therapy was limited by mod- erate, but significant, heterogeneity, probably related to the variability of the intervention (eg, type of music, active involvement, such as singing/playing a musical instrument and dancing, or passive involvement, such as listening) and the heterogeneity of the patient popu- lation in terms of the severity of dementia and the type of dementia. the efficacy of aromatherapy and massage therapy, both associated with conflicting results, remains unknown. light therapy and smst therapy did not show any noteworthy effect for clinical practice. the body of evidence concerning cognitive/emotion- oriented interventions, which include reminiscence therapy, spt and validation therapy, had important methodological limitations. the quality of the primary studies was low, as reported by the review authors, and the sample size of the studies was not powered to detect statistically signifi- cant effects. even when it was possible to combine studies in a meta-analysis, for example, for spt, the pooled estimated effect was not statistically significant. added to these shortcomings was the variability in the length and type of the interventions and the multitude of outcomes measured. overall, convincing evidence supporting the effectiveness of these psychological inter- ventions was lacking. the most frequently assessed intervention in several trials was behavioural management techniques. the ele- ments in this type of intervention included behavioural or cognitive–behavioural therapy, functional analysis of specific behaviour, individualised behavioural reinforce- ment strategies, communication training and other ther- apies, such as habit training, progressive muscle relaxation and token economies. the body of evidence supporting the effectiveness of behavioural management techniques includes positive and negative studies. among the types of behavioural management techni- ques which aimed to enhance communication skills, formal caregiver training and dementia mapping pro- vided in residential care were found to be effective at reducing agitation. the evidence was convincing when the intervention was supervised by healthcare profes- sionals, with the effectiveness possibly persisting for – months. there is some evidence that multicomponent inter- ventions that use a comprehensive, integrated multidis- ciplinary approach combining medical, psychiatric and nursing interventions can reduce severe behavioural pro- blems in nursing home patients. other interventions such as animal-assisted and exer- cise therapy did not show any convincing effect on any bpsd. strengths of this overview the present overview represents a substantial update of a previous overview, using a search strategy launched in , that provided a comprehensive synthesis of the evidence about non-pharmacological interventions on bpsd. we systematically searched reviews available in four electronic databases and systematically collected the evidence regarding non-pharmacological interventions for the treatment of behavioural disturbances in patients with dementia. to allow the identification of srs of all potential non-pharmacological interventions, we used a highly sensitive search strategy by avoiding the inclusion of any specific name of non-pharmacological interven- tions. we also assessed the methodological quality of the reviews using the amstar criteria. another strength of the present overview was the adoption of a systematic and transparent method, and the use of duplicate, inde- pendent reviewers who performed the phases of study selection, data abstraction and data interpretation separately. limitations of the interpretation of the results overall, the srs had a number of methodological limita- tions that could have affected the confidence in the reported results. first, the heterogeneity of the types and characteristics of the interventions, even within the same class of non-pharmacological interventions, was the most significant problem that emerged from the present study. one implication is that there are serious methodological issues that question the correctness, in our opinion, of combining studies in a meta-analysis, as abraha i, et al. bmj open ; :e . doi: . /bmjopen- - open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://bmjopen.bmj.com/ some authors have previously performed. moreover, in some studies, the description of the interventions is too vague to allow a complete understanding of what was actually performed. in addition, even in cases in which the intervention is well characterised, the dosage of the intervention, and the means used for its delivery, varied considerably. for example, in the case of music therapy, music interventions such as listening to music via head- phones, based on participants’ musical preferences, differed from listening, playing percussion instruments, singing, movement or dance and was observed across all nine trials combined in the meta-analysis. in the case of aromatherapy, there were several essential oils that were used in the primary studies, but in some instances, even when similar components were used (eg, melissa essential oil), the mode of administration differed among trials. similarly, there was great variation in the intensity (from to lux), duration ( – hours), frequency of exposure ( days to weeks) and type of device used (dawn-dusk simulator ), when light therapy was investigated for behavioural pro- blems in dementia. the variation in the characteristics of the interven- tions was particularly pronounced in the trials ascribed to behavioural management techniques. the trials used different conceptual frameworks, and sometimes broad and quite generic descriptions, to describe the interven- tions that at times were difficult to interpret and which influenced the content and quality of evidence of the srs. in this area, it is therefore difficult to produce a satisfactory classification, which implies that different srs did not consider the same group of studies, even when they clearly investigated non-pharmacological interventions specifically designed to improve behav- ioural management. finally, the arbitrary age cut-off of the patients (more than years of age) and the exclusion of reviews pub- lished before constitute other limitations of the present overview. we did not evaluate the methodo- logical quality of the primary studies included in the reviews, as this will be the scope of our next publication, in which we will apply the grade criteria. conclusion this overview succeeded in providing a complete and up-to-date compendium of non-pharmacological inter- ventions in older people with dementia, using recently published srs and meta-analyses. the most promising treatments appeared to be music therapy and some behavioural management techniques, particularly those involving caregiver-oriented and staff-oriented interventions. despite the considerable number of published articles included in this overview, the evi- dence supporting the efficacy of non-pharmacological interventions is limited due to methodological quality and sample size and to the presence of important var- iations in the taxonomy of the non-pharmacological interventions, the outcomes assessed and the tools used to evaluate the outcomes. author affiliations geriatrics and geriatric emergency care, italian national research center on aging (irccs-inrca), ancona, italy servicio de geriatría, hospital universitario ramón y cajal, madrid, spain department of internal medicine (geriatrics), ghent university, ghent, belgium landspitali university hospital reykjavik, reykjavik, iceland department of medicine for the elderly, woodend hospital, aberdeen, uk department of medicine, university college cork, cork, ireland ‘golgi cenci’ foundation, milan, italy twitter follow roy soiza @abdngeriatrics contributors ia, jmr, ac, rs, ac-j and do conceived and designed the study. the manuscript of this protocol was drafted by ia, jmr, ac, rs, ac-j, adg and bhm and revised by mp, ang, fmt and gda. ia and jmr designed the search strategies; ia, jmr, fmt and gda performed the search, screening and assessment independently. ac arbitrated disagreements during the review. all authors contributed to data analysis and critical revision of the paper; additionally every author approved the final version. funding the research leading to these results has received funding from the european union seventh framework programme (fp / - ) under grant agreement no. 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open access o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n m a rch . d o w n lo a d e d fro m http://dx.doi.org/ . / http://dx.doi.org/ . /j. - . . .x http://dx.doi.org/ . /gps. http://dx.doi.org/ . /j.jpsychires. . . http://dx.doi.org/ . / http://dx.doi.org/ . / http://dx.doi.org/ . / http://dx.doi.org/ . / http://dx.doi.org/ . /j. - . . .x http://dx.doi.org/ . /j v n _ http://dx.doi.org/ . /j v n _ http://dx.doi.org/ . /s - ( ) - http://dx.doi.org/ . /s - ( ) -x http://bmjopen.bmj.com/ bmj open ; . doi: . /bmjopen- - corr open access corrections: systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. the senator- ontop series abraha i, rimland jm, trotta fm, et al. systematic review of systematic reviews of non- pharmacological interventions to treat behavioural disturbances in older patients with dementia. the senator-ontop series. bmj open ; :e . doi: . / bmjopen- - the authors would like to thank dr. reisberg and colleagues for their appreciation and for their valuable comments our manuscript. reisberg and colleagues correctly noticed the discrepancy in presentation of the categorization of the non-pharmaco- logical intervention between the main text and the abstract. the authors would like to underline that the categorization of the interventions in the main text is the correct one and therefore the results in the abstract should be modified as follows: srs and primary studies were identified, comprising the following categories of non-pharmacological interventions: ( ) sensory stimulation interventions ( srs, primary studies) that encompassed: shiatsu and acupressure, aromatherapy, massage/ touch therapy, light therapy, sensory garden and horticultural activities, music/dance therapy, dance therapy, snoezelen multisensory stimulation therapy, transcutaneous electrical nerve stimulation; ( ) cognitive/emotion-oriented interventions ( srs; primary studies) that included cognitive stimulation, reminiscence therapy, validation therapy, simulated presence therapy; ( ) behaviour management techniques ( srs; primary studies); ( ) multicomponent interventions ( sr; four primary studies); ( ) other therapies ( srs, primary studies) comprising exercise therapy, animal-as- sisted therapy, special care unit and dining room environment-based interventions. please note that the numbers provided are absolute numbers and the following reviews can fall in different categories as they considered different types of non-phar- macological interventions and thus explain any discrepancy in numbers: seitz that considered aromatherapy, light therapy, music/dance therapy, snoelzen therapy, and reminiscence therapy; o'neil that considered snoelzen, behavioural management techniques; chaudhury that considered light therapy and the role of physical environment in supporting person-centred dining in ltc; and whear that examined the effect of improved lighting and table-setting contrast in a dining room environment. in addition, two primary studies fell in two different catego- ries: proctor was in reviews that dealt with behavioural management techniques (bmt) and one review that, within the multicomponent interventions, examined the combined effect of bmt with educational intervention; and teri was considered in the bmt reviews and the exercise-based reviews. in addition, the authors want to point out the following minor corrections in the main text: page under the paragraph on behavioural management techniques it should read ‘one review of reviews and five srs’ instead of ‘one overview of reviews and four srs’. page , the authors missed describing the seventh study with repeated measures design: “in the a small repeated measures study mossello et al, evaluated the effect of animal assisted therapy in ten patients attending an alzheimer day care centre. the design consisted in weeks' pre-intervention, weeks' control activity with plush dogs, and weeks' animal assisted therapy. npi was used to assess bpsd and cmai to assess mood; both outcomes remained unchanged across the study. anxiety measured with npi decreased during animal assisted therapy (p= . ) ’. open access this is an open access article distributed in accordance with the creative commons attribution non commercial (cc by-nc . ) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. see: http:// creativecommons. org/ licenses/ by- nc/ . / miscellaneous http://bmjopen.bmj.com/ http://creativecommons.org/licenses/by-nc/ . / bmj open ; . doi: . /bmjopen- - corr open access © article author(s) (or their employer(s) unless otherwise stated in the text of the article) . all rights reserved. no commercial use is permitted unless otherwise expressly granted. bmj open ; . doi: . /bmjopen- - corr 	systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. the senator-ontop series 	abstract 	introduction 	methods 	search strategy and inclusion criteria for systematic reviews 	data extraction and management 	outcome measures 	inclusion criteria for primary studies and assessment 	risk of bias assessment and grading the quality of evidence 	results 	sensory stimulation interventions 	shiatsu and acupressure 	aromatherapy 	massage therapy 	light therapy 	sensory garden and horticultural activities 	music and dance therapy 	dance therapy 	snoezelen multisensory stimulation therapy 	transcutaneous electrical nerve stimulation 	cognitive/emotion-oriented interventions 	cognitive stimulation 	reminiscence therapy 	validation therapy 	primary studies 	simulated presence therapy 	behavioural management techniques 	primary studies 	setting-based description 	multicomponent interventions 	integrated interventions combining psychiatric and nursing home care 	combination of environmental sensory stimulation 	combination of music and hand massage 	other interventions 	exercise therapy 	animal-assisted therapy 	primary studies 	dining room environment 	special care units 	discussion 	strengths of this overview 	limitations of the interpretation of the results 	conclusion 	references final program bi-digital o-ring test symposium / ecim th september - friday, budapest, hotel aquaworld resort budapest**** bi-digital o-ring test symposium / ecim th september - friday, budapest, hotel aquaworld resort budapest**** . - . ground floor registration amazonas . chairman of this section yasuhiro shimotsuura momir dunjic . - . yasuhiro shimotsuura evaluation of the detection of pathological areas of patients using objective measurement apparatus – finger muscle tone decrease by physical stimulation of the skin . - . yasuhiro shimotsuura study about the influence on the pain of poppy seed oil dropped in the organ representation areas of umbilicus . - . emi okuda electromagnetic hypersensitivity caused by dental material metal post core . - . fujimaki goro immune system and dental treatment . - . haruki banba two cases showing improvement in symptoms after removal of dental restorative metal (amalgam) based on assessments using the bi-digital o-ring test . - . hirobe chieko effect of music (effect of music on dopamine, adiponectin, oxytocin levels) . - . coffee break . - . horiuchi nobuko changes in the factors contributing to improvement of medically unexplained symptoms by bite plates based on bi- digital o-ring test: . volume changes . - . krstic dejan detection non-ionising electromagnetic fields by bi-digital o- ring test and novel possibility for protection . - . momir dunjic early detection of risk factors for developing depression in patients by using sertralin and atosiban as a reference substance in bi-digital o-ring test (bdort) . - . momir dunjic early detection of disorders of the thyroid gland by using levothyroxine and propylthiouracil (ptu) as a reference substance in bi-digital o-ring test (bdort) . - . ryota fujiwara reinforcement method of the resonance sensitivity of fingers for bi-digital o-ring test beginners . - . q&a . - . lunch amazonas . . - . kemal n ozerkan workshop:application of the bi-digital o-ring test on acupuncture and complementary (integrative) medicine (holitherapy method) . - . ali Özden Öztürk workshop: the relationship of awareness under conscious hypnosis (auch ©) method with yamamoto new scalp acupuncture (ynsa) and soliman's hand acupuncture th september - friday, budapest, hotel aquaworld resort budapest**** amazonas + . - . prof. yoshiaki omura with assistance of prof. marilyn k. jones quick screening of cancers, cardiovascular diseases, and brain problems by non-invasively detecting visible and non-visible abnormalities existing at accurate organ representation areas of head, pupils, eyebrows, areas on & around eyes, lips, & nose of face, tongue, hands, & feet, and use of “rapidly changing qrs complex of ecgs” or “mouth, hand, & foot writing form” to make quick non-invasive early diagnosis of cancer & other medical problems on any part of body & evaluation of any therapeutic effects. . - . prof. yoshiaki omura with assistance of prof. marilyn k. jones ) various non-invasive early diagnostic methods including voice diagnosis, facial diagnosis, pupil diagnosis, eyebrow diagnosis, nose diagnosis, bone marrow representation area diagnosis, lip diagnosis, surface & underside of tongue diagnosis, hand diagnosis, navel diagnosis, & foot diagnosis, "mouth, hand, & foot writing form" diagnosis to screen or detect any cancer at any part of the body, detecting of cancers by "rapidly changing qrs complex as well as rising part of t- wave", ) harmful electromagnetic field (emf) on hospital bed, airplane seating, and automobile seats & roof of most automobiles, and how to protect against these emf by unplugging or using emf neutralizers, ) typical example of western medicine's failure to improve patient's condition, while use of bi-digital o-ring test provided highly beneficial effect in treatment of intractable brain tumor, breast cancer with multiple metastasis, alzheimer's disease, memory & other brain problems . - . lunch amazonas + . - . prof. yoshiaki omura with assistance of prof. marilyn k. jones role of human papillomavirus type- (hpv- ) infection in treatment of various cancers & other malignancies: combined use of optimal doses of vitamin d i.u. and taurine mg times/day with or without pqq ~ . mg was found to have safe, very effective universal anti-cancer, anti-memory & anti-ischemic effect with significant increase in acetylcholine, dhea & circulation and additional marked urinary excretion of bacteria, virus, fungus & toxic substances, while widely-used vitamin d of ~ i.u. or even higher dose can significantly promote cancer activities. also, commonly used taurine mg or pqq ~ mg is overdose & has poor anti-cancer activities . - . prof. marilyn k. jones detection of potentially serious medical problems from oral cavity . - . prof. yoshiaki omura with assistance of prof. marilyn k. jones non-invasive, simple, safe, very effective, & economical treatment of cancer, using optimal doses of vitamin d and taurine as anti-cancer or anti-memory or other brain problems, & anti-ischemic heart treatment as an example, including a demonstration on how to estimate if a medication is safe, and if so, how to determine what is the optimal dose, as well as how to detect drug interaction when multiple drugs are being used simultaneously, using participant volunteers & patients. he can also demonstrate overdose effect of beneficial medication without actually giving toxic overdosed medicine. amazonas . . - . welcom party th european congress for integrative medicine - ecim th september - saturday, budapest - hotel aquaworld resort budapest**** . - . ground floor registration . - . ganges + meeting of european society of integrative medicine (esim e.v.) . - . welcome coffee break . - . amazonas i. opening ceremony ' pianist - Ágnes várallyay prof. józsef bódis, md, phd, d.sc rector of the university of pécs chairman of rectors' conference mr. alojz peterle, member of the european parliament (mep) mr. rahul chhabra, ambassador of india to hungary prof. gabriella hegyi md, phd, president of the congress . - . plenary chairman of this section . . - . george lewith herbal medicine and antimicrobial resistance at southampton. gabriella hegyi . . - . andras szasz new method in integrative oncology: oncothermia józsef betlehem . . - . peter zimmermann legal situation of anthroposophic medicine in europe . . - . gabriella hegyi the current situation of integrative medicine in east-europe . - . heel award - “excellence in integrative medicine research award” amazonas . room herbal medicine . - . chairman of this section mohammad hashem hashempur george lewith . . - . mohammad hashem hashempur efficacy of topical traditional chamomile oil on mild and moderate carpal tunnel syndrome: a randomized double- blind placebo-controlled clinical trial . . - . george lewith mulberry-extract reduces total blood glucose rises in normoglycaemic adults . . - . mojtaba heydari the effect of leek (allium iranicum (wendelbo) ) leaves extract cream on hemorrhoid patients: a double blind randomized controlled clinical trial . . - . mohammad hashem hashempour effecacy of the green tea (camellia sinensis) tablet in knee osteoarthritis . . - . forough namjoyan preparation and evaluation of vaginal cream containing extracts of linum usitatissimum, foeniculum vulgare and salvia officinalis . . - . george lewith complementary and alternative healthcare use by participants in the pace trial of treatments for chronic fatigue syndrome . . - . xiao-yang (mio) hu andrographis paniculata for symptomatic relief of acute respiratory tract infections in adults and children: a systematic review and meta-analysis . . - . ramona-niculina jurcau antioxidant and anti-discomfort when walking effects of arnica montana, in ankle sprains . . - . iván szalkai the effect of kaqun water on functions of elderly people . . - . mojtaba heydari efficacy and safety of rhus coriaria l. in patients with hyperlipi-demia: a randomized controlled trial . . - . anna mária nagy treatment of gastrointestinal and respiratory chronic inflammatory conditions associated with eosinophilia using natural remediesm . . - . mohammad hashem hashempur herbal medicines’ use and their application-determining parameters among patients with hyperlipidemia: a cross- sectional survey . . - . q&a . - . krisztina erdélyi the functioning and safe use of ear candles sponsored lecture . - . coffee break amazonas . room acupuncture . - . chairman of this section theodoratou konstantina szilárd hamvas . . - . theodoratou konstantina the effects of acupuncture on addictive behaviours. . . - . anas alnazer hijama . . - . fatemeh tabatabaei the effectiveness of wet cupping on diseases: a systematic review of randomized controlled . . - . francesco longo biophysical interpretation of tuina in horse medicine . . - . jean pierre fossion thermogenetic aspects of acupoints: can we explain physiologically coldness in bone and steaming bone syndrome? is there a corollary significance for metastatic breast- and prostatic cancer? . . - . zlata jovanovic ignjatic microwave resonance therapy - the quantum possibilities of the acupuncture system stimulation . . - . vincent ch chung electroacupuncture plus splinting versus splinting alone for carpal tunnel syndrome: a randomized controlled trial . . - . kemal n ozerkan electrical characteristics of acupuncture points and the relation with the body organs . . - . mehmet tugrul cabioglu a different view on acupuncture applications to back- shu,front-mu and huatuojiaji points . . - . mehmet tugrul cabioglu our experience in neonatal acupressure and acupuncture . . - . monika havasi acupuncture and placebo effect . . - . gregor fischer impact of neural therapy (nt) as an integrative therapy in head and neck . . - . szilárd hamvas acupuncture and research . . - . q&a . - . coffee break ganges + + room homeopathy i. . - . chairman of this section peter fisher . . - . peter fisher update on biological model and clinical research in homeopathy . . - . ernő tyihák unique role of endogenous formaldehyde and ozone in the biological activities of high dilutions of ingredients - dose- dependent endogenous bioequivalence . . - . jens behnke meta-analyses of homeopathy and the philosophy of science: applying double standards because of plausibility bias? . . - . q&a . - . coffee break ganges + + room homeopathy ii. . - . chairman of this section amanda coakley ildikó zarándi . . - . tibor hajtó standardized plant extracts (mistle to electinsand arabonoxylan) given in doses which are in many order of magnitude under their toxicity exhibit immunomodulatory effect sand clinical benefit. . . - . trine stub safety of treatment provided by homeopaths . . - . thomas ostermann the use of extensible markup language (xml) to create a mobile homeopathic materia medica . . - . ildikó zarándi treating infertility with homeopathy . . - . sabine klein physicochemical investigations of homeopathic potencies: a systematic review of the literature . . - . petra klement tonsilotren in chronic tonsillitis: results of a randomised, international, controlled clinical trial . . - . Ágnes földi utilizing the recent homeopathic and academic medical research findings in treating early age tic . . - . q&a mind & body amanda coakley . - . . . - . amanda coakley exploring the experience of pet therapy on patients and staff in the acute care setting. . . - . benno brinkhau cupping in chronic low back pain– a three-armed partly- blinded randomised clinical study . . - . q&a ganges + room workshop . - . jan kersschot biopuncture and pain treatment e-poster section i. chairman of this section . - . agnes kerner . . - . dunjic slobodan bi-digital o-ring test plays an important role in detoxification procedures while treating patients with chronic diseases . . - . dunjic slobodan bi-digital o-ring test should be used in integrative oncology complementary with standard medical procedures . . - . ana gifing our experience regarding lactose intolerance and parameters of metabolic syndrome in obese patients . . - . dragan jevdic thermoregulation and supplementation with anti-diabetic therapy in the treatment of patients with diabetes mellitus type and type . . - . dragan jevdic contribution of thermoregulation and supplementation in tratment organic psychosyndrome - case report . . - . krisztina koncsek whole body electric muscle stimulation (wb ems) – a new way to the functional fitness in seniors? case study . . - . christa raak in vitro study to evaluate the tolerance of mesem-cream using the bovine- udder skin model . . - . forough namjoyan chemical and natural approach to vaginal atrophy . . - . martin niemeijer kingfisher group: bolk's companions . . - . agnete kristoffersen use of complementary and alternative medicine in patients with health complaints attributed to former dental amalgam fillings . . - . matthias kröz treatment of chronic insomnia with bryophyllum pinnatum two case reports . . - . carmen steinborn effects of hyperthermic baths on depression, sleep and heart rate variability in patients with depressive disorder. a randomized controlled pilot trial . . - . carmen steinborn influence of inonotus hispidus on function of human immune cells . . - . oliver szasz in-situ tumor-specific immune-action by oncothermia . . - . ana paula simões- wüst treatment of breast cancer patients with mistletoe extracts of various host trees: a descriptive database study . . - . jayoung oh herbal medicine to treat the side effects of chemotherapy in breast cancer patients : systematic review . . - . csaba melczer nea – a mobile application development and exercise program to improve public health . . - . dongsu kim factors associated with utilization of traditional korean medicine: results from a panel analysis . . - . soo hyun kwon a study on technology forecasting using delphi survey in korean medicine . . - . istván molnár effects of complex pain management on the quality of life . . - . slavisa stanisic regulatory and legislative issues for clinical implementation of integrative medicine in serbia . . - . eva tihanyi the practice of transcendental meditation as self-care technique in small town . . - . vincent ch chung electroacupuncture plus routine care for managing refractory functional dyspepsia: protocol of a pragmatic randomized trial with economic evaluation . . - . imre lipóczki the significance of energy blockages and the priority of removing them in acupuncture practice . . - . turk zmago treatment of pain in fibromyalgia with acupuncture . . - . agnes mazic-de sonis acupuncture in the multimodal biopsychosocial pain management. . . - . judit veronika benda symptom free rls through diet, a case-study . . - . george lewith positive "framing" as a powerful medication for pain: a meta-analysis of randomized trials . - . coffee break ganges + room anthroposophic medicine chairman of this section . - . martin-günther sterner henrik szőke . . - . martin-günther sterner anthroposophic medicine as the best practice example of integrative medicine. backgrund, methods, tools in the clinical praxis and scientific research. . . - . ana paula simões-wüst potential of bryophyllum pinnatum as a detrusor relaxant: effects of a bufadienolide-enriched fraction in a porcine bladder model . . - . matthias kröz reliability of the inner correspondence and harmony questionnaire with painting therapy (icpth) . . - . evelyne kloter hyperemesis gravidarum treated with anthroposophic complex therapy. a case series . . - . martin niemeijer an instrument for dimensional diagnostics of a childs constitution (ikc) . . - . carmen steinborn immunomodulatory effects of metal salts at sub-toxic concentrations . . - . rebecca hufnagel effects of neurodoron® in patients with nervous exhaustion, results from a randomized controlled clinical trial . . - . jansen eef common aspects of tcm, acupuncture and anthroposophical medicine . . - . roy sandeep breast tumor regression using mistletoe extract: an evidence from an indian clinic . . - . jan vagedes multimodal integrative therapy concept of anorexia nervosa. methods, tools, outcomes, studies. . . - . henrik szőke integrative system aproach in the therapy of adenoid hypertrophy, glue ear and intercurrent acute otitis media in children . . - . q&a . - . gathering at the hotel lobby . - . transfer - to boat . - . budapest dinner cruise - gala dinner . - . transfer - to hotel amazonas room integrative oncology . - . chairman of this section nadja klafke andrás szasz . . - . susann kleinsimon well tolerated triterpene-containing misteltoe extract viscumtt reduce tumor volume in pediatric sarcoma xenografts . . - . francesco longo tcm treatment in melanomas of the horse . . - . eva kiss the thermal effect of modulated electro-hyperthermia on tumor-cell membranes . . - . amir mohammad jaladat malva sylvestaris preventive effect on urinary toxicity of radiotherapy for prostate carcinoma. . . - . nadja klafke optimizing cancer patients’ follow-up care in general practices by integrating complementary and alternative medicine (cam) methods – study protocol of the cam- nakopa-project . . - . wiebke stritter establishing integrative care for children with cancer – the impact of teamwork . . - . tamas vancsik electro-hyperthermia induced programmed cell death and immune response in a c colorectal cancer allograft model . . - . gábor somlyai pre-clinical and clinical data confirm the anticancer effect of deuterium depletion . . - . vincent ch chung effectiveness of acupuncture and related therapies for palliative care of cancer: overview of systematic reviews . . - . haleh ghavami the effect of reflexology massage on hair regrowth after chemotherapy induced alopecia in cancer women . . - . q&a . - . coffee break amazonas . room health care, health politic, cam . - . chairman of this section momir dunjic judit veronika benda . . - . momir dunjic integrative approach in diagnosis and treatment of autistic children . . - . amir mohammad jaladat cassia fistula in the management of cutaneous lesions of pemphigus vulgaris a double- blind, placebo-controlled clinical trial . . - . pauliina aarva polyphony of health discourse: heroes and villains of cam narratives . . - . sari helkala- koivisto shared communication between evidence-based and experience-based clinical care . . - . agnes kerner health profile comparison between hungary and china . . - . rossi elio clinical risk management in complementary medicine: use of failure modes and effects analysis (fmea) in homeopathic and acupuncture public clinics . . - . konstantin sukhov hirudotherapy and integrative medicine . . - . zlata jovanovic ignjatic traditional and integrative medicine in serbia . . - . matthew leach integrative health care – working towards a clearer definition . . - . slavisa stanisic integrative medicine in the treatment of rare diseases . . - . judit veronika benda eating habits, health and lifestyle of organic consumers in hungary . . - . q&a varia . . - . gabriel petrovics why does not the acupuncturae have the response effect in some cases . . - . li ji’an strategy for tcm study from tu you-you’s nobel prize winning . - . q&a ganges + + room pain management . - . chairman of this section henriette murakozy gabor ormos . . - . henriette murakozy mesacosa concept for coping with negative stress and related chronic pain syndromes . . - . ghavami haleh the effect of applying reflexology massage on nitroglycerin induced migraine type headache . . - . gabor ormos evaluation of the effectiveness of manual therapy on the cervical spine . . - . q&a moving, massage . . - . forough namjoyan complementary and alternative medicine for osteoporosis . . - . patricia ronan what benefits do patients with cystic fibrosis report from learning tai chi? . . - . q&a integrative physiotherapy . . - . antonia di francesco brain stimulation by pulsed electromagnetic fields in the treatment of alzheimer&apos;s disease: an open-label study. . . - . kazuko tatsumura effects of far-infrared onnetsu therapy on rheumatoid arthritis and cancer . . - . q&a . - . coffee break ganges + + room ayurveda medicine . - . chairman of section badekila sathyanarayana gramminger harsha . . - . harsha gramminger cost and health benefits from integrating new age ayurveda into european health systems . . - . elango ranganathan integrative oncology in india . . - . vivek madar garbh sanskar, to harness the maximum benefit for both fetus and mother . . - . badekila sathyanarayana ayurvedic management for osteoarthritis with special reference to polyherbal ayurvedic products . . - . badekila sathyanarayana ayurvedic management for alcohol addiction with special reference to alcoholic liver disease with a polyherbal research product herbadict . . - . q&a ganges + room workshop . - . eef jansen how to use classical acupuncture in anthroposophic medicine: aspects of am: elements, physical body, etheric body, astral body, spiritual body/individuality. aspects of tcm: elements, anticpoints, heaven - earth - man, threeheather. how to bring them together for the concrete therapy. ganges + room workshop . - . priv.-doz. dr. dominic irnich integrative treatment of myofascial pain e-poster section ii. chairman of this sessios . - . agnes kerner . . - . dusan vesovic chrono-nutrition program dr gifing® regulates both body weight and biochemical parameters in obese patients . . - . dusan vesovic proper nutrition and supplementation play an important role in integrative gynaecology - case report . . - . zoltan szabo different salt products and public perceptions in the adult population of hungary . . - . jafar abolghasemi medicinal plants with renal side effect from the perspective of traditional persian medicine . . - . myeong soo lee maca (lepidium meyenii) for improving semen quality parameters: a systematic review . . - . mojtaba heydari topical citrullus colocynthis (bitter apple) extract oil in painful diabetic neuropathy: a double-blind randomized placebo-controlled clinical tria . . - . neha sharma randomized placebo controlled study of homeopathy supplementation in pulmonary tuberculosis: effect on treatment outcome . . - . zaheri zeinab traditional persian medicine (tpm) approach to psoriasis treatment . . - . seyed hamdollahmosavat prevalence and associated factors related to complementary and alternative medicine use among pediatric patients in a subspecialty clinic . . - . maja miskulin new topical treatment of symptomatic internal hemorrhoids in a general practice setting . . - . agnes nagy what is the role of dance in the stressmanagement? . . - . nicola robinson cf-cats : exercise preferences in cystic fibrosis: potential of tai chi for long term health . . - . wiebke stritter that it is more than just warmth - the perception of warmth and relaxation via warming compresses . . - . ramona-niculina jurcau the influence of raindrop aromatherapy massage technique versus free aromatherapy massage, on the stress of intense exercise . . - . sabine klein users of complementary medicine generally maintain a healthy lifestyle . . - . konstantin sukhov hirudotherapy and correction of male erectile dysfunction . . - . judit müller integrative supportive treatment in a child with acute lymphoblastic leukemia. case presentation. . . - . imen sohaibani private sector investment in integrative health care in saudi arabia: implications on future health care planning . . - . mehdi pasalar prevention of epilepsy from the viewpoint of traditional persian medicine . . - . anna mária nagy combined treatment of persistent skin rashes of years duration using natural remedies only – case study of a year old female patient with years follow up . . - . antonia di francesco change of the human energetic field emission before and after photostimulation of acupuncture points for fibromyalgia syndrome (fms): case report amazonas . . - . closing ceremony music - central band of the hungarian army . - . lunch sustainability , , ; doi: . /su www.mdpi.com/journal/sustainability article social farming: heterogeneity in social and agricultural relationships angela genova *, martina maccaroni and elena viganò department of economics, society, politics, university of urbino carlo bo, urbino, italy; m.maccaroni@campus.uniurb.it (m.m.); elena.vigano@uniurb.it (e.v.) * correspondence: angela.genova@uniurb.it received: april ; accepted: june ; published: june abstract: social farming (sf) has emerged as a social innovation practice shaping heterogeneous approaches and results. this study discusses the complexity of sf policy and practices, and it is led by the main hypothesis that the relationship between agricultural and social dimensions might be very heterogeneous, not only in different national contexts but also within the same national and local level. sf policy and practices are investigated testing the hypothesis of three main different modalities of interaction according to how the social and the agricultural perspectives interact. in the first, social target is not involved in the production system of the farm and the farm is the context where actions and measures of a social nature take place. in the second type of interaction, the farm employs the beneficiaries in some of its production activities collaborating with the social services. the third is where the farm organizes its activities to actively employ targeted people to enhance their social inclusion and integration in the community. italian sf policy and practices are analyzed as case study, through the lens of sociological critical discourse analysis regarding the regional regulatory documents, and interviews for local case studies. the results of the study show that sf policy and practices might be very heterogeneous also within the same national and local level, outlining different hybridization of social and agriculture actions that can be properly analyzed through the three sf model proposal. this study contributes to the broader debate on the various dimensions of sustainability, suggesting the need for further research on the efficiency of sf as local development model sustainable in economic, social and environmental terms. keywords: regional regulations; critical discourse analysis; social innovation; multifunctional agriculture; diversification; organic agriculture . introduction social farming (sf) is a phenomenon rich in innovative experiences [ ], characterized by multiple forms of relationships (including extra-market) between different stakeholders. sf is a practical implementation of the concepts of multifunctional agriculture and diversification [ – ]; it is coherent with the promotion of local development models that are sustainable in economic, social and environmental terms [ – ]. moreover, it has been developed through an increasing awareness of the tangible and intangible resources developed by agriculture. the agricultural context is characterized by the development of productive commodities as well as specific relations between people and with the environment, providing a framework with the potential of responding to the social needs of communities, especially in fragile rural areas. in recent decades, neoliberal reforms have deprived fragile rural areas of most of their social and community services due to cost containment policies [ – ]. sf could also provide social or educational services to tackle social exclusion for the disadvantaged or those with disabilities [ , ]. furthermore, sf offers an important opportunity to create income and employment for many agricultural enterprises capable of halting the exodus towards urban areas which has been going on for several decades now, with an associated loss of production activities [ ]. in rural areas, the sustainability , , of orographic and pedoclimatic context, as well as the structural characteristics of many agricultural firms reduce the likelihood of achieving adequate competitiveness in producing commodities. sf thus represents a form of diversification of farm activities which offers an opportunity to define new development strategies for small- and medium-sized farms and thereby increases their chances of survival [ – ]. in europe, the first sf activities were realized in the s, then sf has developed according to different national paths, shaping two main different models: the northern european specialized model and the mediterranean communitarian model of social farming [ – ]. differences concern the main protagonists as well as the relationship between them. in italy and france, sf is mainly organized by third sector organizations, while in belgium by the private sector, and in germany, it has been institutionalized. moreover, in netherlands, it is mainly family-based activities, in ireland or italy it is community-based and in germany, is it professionally-based [ ]. in the last decade, sf has been part of the european policy agenda for rural development [ ], and despite the fact that it is still too early to assess the impact of the past and ongoing investments, it might be assumed that they have represented a relevant opportunity for sf development in europe [ ]. sf has emerged as a social innovation practice [ ] characterized by a bottom-up process shaping heterogeneous approaches, and results in creating viable and sustainable rural and peri-urban areas according to a social-ecological perspective [ ]. it has also been named with different labels such as care farming or green care, thus underlining the aim to combine caring for people with caring for land [ ]. the interaction between agriculture practices and care provision shapes an area of hybrid practices [ ] and transdisciplinary research [ ] that has been conceptualized and articulated as “connective agriculture” by leck, evans and upton [ ]. despite several studies on different national experiences in europe [ , – ], there is a lack of development in the theoretical framework for sf analysis. therefore, this study discusses the complexity of sf policy and practices, and it is led by the main hypothesis that the relationship between agricultural and social dimensions might be very heterogeneous, not only in different national contexts, as it has been argued in previous studies, but also within the same national and local level. therefore, this article investigates sf policy and practices at national and regional level, focusing on italy as a national case study, to contribute to investigating the hybrid characteristics of sf policy and practices, testing the hypothesis of three main modalities of interaction according to how the social and the agricultural perspectives interact and are integrated [ ]. the first involves interaction between agriculture and social services which involves simply sharing some designated areas without actively employing targeted people in the farming activity: the social aspects do not interfere with the main production activity, but the farm is the context where actions and measures of a social nature take place. in the second type of interaction, the farm employs the beneficiaries in some of its production activities collaborating with the social services. the third is where the farm organizes its activities to actively employ disadvantaged people to enhance their social inclusion and integration in the community. in italy, despite the increasing interests concerning sf development, there is a lack of systematic data on sf practices. in the attempt to give an official dimension to social farming, the italian regions have envisaged in their laws, the display of lists of the recognized social farming operators; nevertheless, its implementation is still ongoing. the regional lists are consultable online, and so far, only experiences have been collected and are located in only eight regions. the information gap about social farming is quite huge, since social farming is widespread within the italian territory. in the last decade, different associations and experts have been trying to give a description of social farming phenomenon—mainly from a qualitative point of view—to bridge the information gap. a recent attempt to give a quantitative dimension to social farming was carried out within the rete rurale nazionale project in through a report about social farming in italy [ ]. within this study, it was possible to identify more than social farming experiences located within the italian territory. however, the number of social farming operators is most likely to be higher and more studies should be carried out at a national level to obtain a clearer picture of social farming. sustainability , , of the italian case has already been broadly studied and, therefore, some of the main characteristics of sf in italy have been discussed, such as some aspects of regional differences as well as innovation [ – ]. this represents a point of strength of this study because it is based on an updated and deep analysis of national and regional policy contexts as well as local practices, and has pushed forward the comparative analysis and suggested a theoretical framework of analysis that might be of interest to a much broader and international audience. . materials and methods . . social farming policy analysis at a regional level in italy, at a national level, the main regulatory context for sf is represented by national law no. of . however, institutional autonomy has pushed several regions into adopting specific and heterogeneous regulatory contexts to support sf [ ]. this study develops a comparative enquiry into those regional regulations, focusing on policy targets, promoted activities and supporting tools through a sociological and critical discourse analysis approach [ ]. according to critical discourse analysis, social realities have a reflective character and, consequently, the way people see, represent, interpret and conceptualize them is an integral part of reality itself. any social event or practice is conditioned by conceptualization proposed at the political-institutional level [ ], therefore, it becomes important to focus on the way social agriculture has been treated in the regional regulatory documents; that is to say, how its meanings have been constructed and, based on these, how it then acted on the region. in particular, this analysis traces the transdisciplinary aspects of a social, cultural, historical, institutional and political nature, on the way to creating an identity for social agriculture in the italian regions. specific contexts construct distinct meanings that have the potential for developing very different policies and actions [ ], even in contiguous territories. the analysis of the policy context focused on the core regional regulatory framework documents. the following aspects were investigated:  the timing of the main regulatory policy for sf at a regional level;  the main public authority involved, and the central framework within which sf policy has been developed at a regional level;  the core activities to be carried out, those able to carry out sf, and the support measures envisaged by the regional laws. . . social farming practices in the case study of the marche region to investigate sf practices in italy, this study focuses on sf practices in the marche case study. these are examined through primary and qualitative data, focusing on the views of farmers. the marche region has been selected because it counts out of the social farming operators officially collected in the regional lists; moreover, being in the centre of italy, it is likely to represent italian heterogeneity, merging some features of the more economically developed regions in the north and some elements of the southern regions [ ]. data on productive models contribute to an investigation into the ecological transition of enterprises from industrial to organic production. the specific features of innovative interaction between the agricultural and social sectors are deeply investigated. data on sf practices in the marche region were collected through semi-structured interviews with farmers in , updating some of the data previously collected. to select cases, we chose to adopt the three main criteria identified by [ ]: convenience, access and geographic proximity. specifically, we used the multiple case study method with a deliberate sampling technique to select information-rich cases [ ]. regarding data analysis, we adopted miles and huberman’s three-step approach [ ], consisting of data reduction, data display, and verification. the list of regional social farming experiences in the marche eroas (elenco regionale degli operatori agricoltura sociale) was used as a first database to identify the possible social farming operators active in the region to interview. in addition to this, a web-based research was carried out sustainability , , of to extend the analysis to those experiences not officially recognized. the list used to carry out the analysis then collected both unrecognized and recognized social farming activities. the list was mainly composed of social cooperatives and agricultural firms. they were then contacted by email and asked if they were willing to be interviewed to share their farming experiences and discuss sf. seven social farming operators gave their consent to be contacted by phone. the analyzed cluster was composed of social cooperatives and agricultural firms. the interviews lasted about min. questions were aimed at gathering data on the characteristics of the farms, and their knowledge or direct experience of sf. . results . . heterogeneous social farming regional regulatory frameworks in respect of social farming, italian law no. / states in article that the regions are responsible for regulating sf activities by defining the criteria for recognition, along with the implementation and development procedures for officially identifying sf operators and placing them on regional lists [ ]. the italian regions have played a fundamental role in the spread and development of social farming activities by recognizing more quickly than national institutions that sf is an innovative solution to real emerging problems facing society and the agricultural sector. social agriculture has even been seen as an innovative tool for promoting and increasing the wellbeing of the disadvantaged by providing activities and services that meet the emerging needs of the community in rural areas. nevertheless, analysis of italian regulatory context shows that sf has been part of the agriculture and rural development policy agenda, while it has been mainly absent in the national and regional social and welfare policies [ ]. therefore, the italian sf regulatory framework is dominated by the farmers’ point of view, while the citizens’ perspective, as people requiring social services support, has never been properly contextualized in the local social services contexts. sf is, in fact, mostly absent in the social policy documents at national or regional level [ ]. moreover, after the national law has been passed, the implementing regulatory acts have still to be fully defined, also with regard to the gray boundary between social and farming activities. . . . different timeframes and contexts in sf regional policies in italy, several regions started approving legislative measures to facilitate sf dissemination and benefits before the national institutions. social farming projects have found it easier to spread where there have been legislative measures integrating agricultural, social and health policies with the aim of guaranteeing extensive local services and income for farms. the presence of sf in the – rural development plans (rdps) furthered the trend initiated by the regions. from this evidence, we can see how the regional legislative processes have resulted in a heterogeneous and fragmented situation, since contexts and timeframes differed from region to region, and the authorities in charge also had different knowledge of the phenomenon. on the one hand, some regions made ad hoc rules (e.g., abruzzo, campania, liguria, the veneto, molise, basilicata and tuscany); on the other hand, some placed sf within the rules on agritourism and/or multifunctionality (lombardy, trentino, friuli-venezia giulia, marche, umbria, calabria, sardinia) followed, in some cases (e.g., the marche), by the preparation of guidelines or provisions for the development of specific experiences [ , ]. table summarizes the regional laws regulating social farming. sustainability , , of table . italian regional laws regulating social farming. region regulation title abruzzo regional law no. of july provisions on social farming basilicata regional law no. of december provisions on social farming calabria regional law no. of april new regulations for the implementation of didactic and social activities and agritourism campania regional law no. of march regulations on social agriculture, social farms and social gardens and modification of regional law no. of march emilia romagna regional law no. of march regulations on agritourism and multifunctionality of farms friuli-venezia giulia regional law no. of february modification of regional law no. of august and provisions on social farming lazio regional law no. of october provisions on simplification and regional development liguria regional law no. of november provisions on social farming lombardy regional law no. of december provisions on social farming marche regional law no. of november regional provisions on the multifunctionality of the farm and diversification in agriculture molise regional law no. of february provisions on social farming piedmont regional law no. of january reorganization of regulations on agriculture and rural development province of bolzano provincial law no. of june social farming province of trento provincial law no. of july modification of provincial law on agritourism and provincial law on kindergarten on social farming puglia regional law no. of march provisions on social farming sardinia regional law no. of may regulation on agritourism, fishing tourism, didactic and social farming sicily regional law no. of august regional stability law for the year —art. —social farming tuscany regional law no. of february provisions on social farming umbria regional law no. of april consolidated law on agriculture veneto regional law no. of june provisions on social farming source: elaboration on [ ]. sustainability , , of as it can be noted from the table above, all the italian regions have approved legislative measures to regulate social farming activities except for the valle d’aosta. however, this absence does not indicate a lack of regional support for sf activities operating within its territory; sf appears in measure ‘co-operation’ of the – rdp, and law no. of gives the criteria for obtaining funds. as indicated in table , the legislative model followed by italian regions is different according to the timeframe of approval and the legislative process involved. the majority of italian regions regulated sf before the definition of a national regulation framework. two regions (emilia-romagna and calabria) approved a law on social farming as an opportunity for promoting the diversification of agricultural activities as far back as in . this model was then pursued by the marche, campania and sardinia, which inserted sf into wider laws on multifunctionality, diversification of agricultural activities and agritourism. tuscany was the first region to approve a specific law on social farming allowing its spread in the territory, whilst umbria included sf in broader regulation on agriculture. most regional laws (piedmont, province of bolzano, friuli-venezia giulia, puglia, basilicata and sicily) approved after law no. of are in full harmony with what is stated in that law. lombardy has regulated social farming in great detail, taking its cue, however, from law no. of . lazio has not properly approved a specific law on sf; with the approval of regional law no. of , the region added social farming as a tool for diversification of agricultural activities in accordance with the national law [ ]. sustainability , , of table . characteristics of regional regulations. region period of approval article of social farming before national law no. of after national law no. of specific provision for sf regulation sf insertion within other regional laws in regulations on agricultural multifunctionality/divers ification in broader regulations on agriculture or rural development in the agricultural stability law abruzzo x x basilicata x x calabria x x campania x x emilia-romagna x x friuli-venezia giulia x x x lazio x x x liguria x x x lombardy x x marche x x molise x x piedmont x x province of bolzano x x province of trento x x puglia x x sardinia x x sicily x x tuscany x x x umbria x x veneto x x x=yes. source: elaboration on [ ]. sustainability , , of with a focus on the marche, regional law no. of november , article , regional provisions on the multifunctionality of the farm and diversification in agriculture, considers sf as an activity within agriculture, in line with article of the italian civil code, and decree law no. of orientation and modernization of the agricultural sector, in accordance with article of the law of march , no. . in other words, sf is seen as a form of hospitality, like agritourism, integrated into the company’s activities. a crucial point of the legislation is the balance of activities (article ), which establishes the need to maintain agricultural activity as the core activity. this is achieved when the time-work ratio attributed to it is higher than that foreseen for sf activity and “when the personnel hired with a non-agricultural qualification is numerically inferior to the staff normally employed for the ordinary management and organization of the primary activity.” for social cooperatives, the balance must be established exclusively in the context of their agricultural activity. this shows a clear imbalance between agricultural and social activities in favor of the first, not only in farms but also in social cooperatives involved in sf activities. the regional regulations, in fact, consider sf as an activity mainly connected to agriculture in promoting the diversification and multifunctionality of farms, more than social activities being part of the social services network. moreover, the issue is very complex and controversial, and the regulatory acts for its implementation is still to be defined in italy. . . . activities, personnel and support in sf regional policies to deeply investigate sf regional regulation, in this paragraph, the different laws have been compared and analyzed to illuminate similarities and differences. in particular, the main activities that can be conducted, the personnel permitted to carry out sf, and the support measures envisaged by the regional laws have been compared. analysis of the regional regulatory context shows a very heterogeneous scenario within which sf concerns rural child care (marche and lombardy regions) and rehabilitative activities for people with health problems, also including pet therapy and natural medicine. social inclusion is also associated with sf activities with specific references to cohousing practices, social housing and environmental sustainability. nevertheless, the central regions have not specified, in greater detail, sf activities compared to northern and southern regions. tuscany, for example, identifies just two macro-categories: socio-labor insertion and educational assistance and/or training activities. furthermore, with reference to the implementation of sf activities, the region of lombardy identifies two different types of social farming, namely, the fattorie inclusive (inclusive farms), where the disadvantaged play an active part in agricultural production, thereby promoting social work inclusion, and the fattorie erogative (providing farms) where the vulnerable are beneficiaries of the services but do not participate in production [ ]. in addition, the inclusive farms target their activities at prisoners on release schemes or ex-prisoners, those with drug or alcohol addictions, the mentally or physically disadvantaged and job seekers. in harmony with the provisions of the national law, all the regions recognize, as sf providers, the so-called agricultural entrepreneur (farmer) and social cooperatives, whose income derives mainly from agricultural activity. another interesting element to consider concerns measures supporting sf activities (table ). articles and of national law no. of define various incentives to support and facilitate the development of social farm activities, such as the definition of priority criteria for participation in bids to public calls for the supply of organic foods for hospitals and school canteens by defining priority criteria; the letting of public fields and plots confiscated from mafia organizations; the furthering of direct support from public bodies to promote sf activities through the organization of training courses and citizen awareness; and maintaining % of market stands in the local direct market for farms demonstrating that their products come from social farming activities. the marche and emilia-romagna are the only regions providing only financial support. in contrast, tuscany and umbria are also considering the possibility of granting regional heritage assets to social farms. furthermore, they also define measures to increase knowledge about and marketing of agri-food products from social farms, for example, through their use in public canteens (health, school and university), promotion on short supply chains or the creation of dedicated platforms. sustainability , , of in particular, liguria and puglia promote the development of regional and district partnership desks for those interested in implementing social farming programs to establish networks. the province of bolzano has the most financially concrete law, promoting a series of financial measures, such as investment in the adaptation and equipping of buildings dedicated to sf activities, help in covering the costs of assistance and healthcare services, and grants for the organization of training and updating courses. lombardy has also defined several measures to support social farms, such as the promotion of products derived from social agriculture in collective catering managed by public and regional bodies, and the acknowledgement of preferential criteria in the attribution of european, national and regional contributions of a financial nature. sustainability , , of table . measures of support. regions not mentioned in the law measures of support financial contributions priority criteria in bids rental/concession of public fields and land plots confiscated from mafia organizations training courses sensibilization of citizens (raising awareness, sales promotion) definition of dedicated measures in the rdp—definition of dedicated regional policies priority criteria or % stands at local direct markets for farms providing sf products abruzzo x x x basilicata x x x calabria x campania x emilia-romagna x friuli-venezia giulia x x x x lazio x liguria x x x x x lombardy x x x x x marche x molise x x x x piedmont x x province of bolzano x province of trento x x x x puglia x x x x x x sardinia x sicily x tuscany x x x umbria x x x veneto x x x x x x x=yes. sustainability , , of . . sf practices in a regional case study the marche is one of the most politically active regions in italy with respect to social farming. in , the region set the stage for the development of pilot experiences through a project called social rural world. the purpose was the promotion of the social nature of the farm, which provides food resources as well as social and relationship-based services able to improve the life quality of the community through the promotion of a healthy way of life and outdoor activities. the region is the promoter of dedicated projects: the agrinido (rural child care) model; the longevità attiva (active longevity project) model; and the ortoincontro (garden meeting) project. the agrinido model sets the characteristics for rural child care with regards to pedagogic, architectonic and farm formats in order to define quality standard [ ]. the approach is rooted in the montessori pedagogic perspective. children’s activities in farm contexts are guided by trained operators. the longevità attiva (active longevity project) model aims at outlining the features of active ageing projects in rural areas, defining the quality standards that farmers have to respect in order to have access to regional funds for these projects [ ]. the model defines socializing and occupational rehabilitative activities such as walking projects in rural areas, meetings with young and local community people, food education workshops and garden cultivation workshops. in addition, cohousing possibilities for older people and specific ‘sensory gardens’ for people with cognitive fragility are outlined. the ortoincontro (garden meeting) project has intended to support more sustainable life styles, fostering competitiveness of local products as well as presenting social farming possibilities to local communities [ ]. however, it was funded only for a limited time. . . . farmer characteristics in the empirical cases in order to better understand how sf activities are rooted in the territory of the region, a qualitative analysis of seven regional practices was carried out. the analysis is structured in three parts. the first collects the characteristics of the farms; the second focuses on a description of social farming activities; the third gathers the opinions of the interviewed sf operators with a focus on the strengths, the weaknesses, and suggestions they have to support more social farming. the analyzed cases concern the experiences of seven agricultural firms active in the marche region; the majority are from the province of pesaro urbino (table ). the farms are small- and medium-sized (especially in terms of employees), but they are quite differentiated in terms of production systems and years in business (some are fairly new; others have been in business for - years). all the farms adopt organic farming methods ( out of are certified), thereby confirming their attention to environmental issues. in addition to agricultural production, they offer different services, such as work placement, educational and rehabilitative activities, and retailing. with respect to subscription to eroas, the regional list of recognized sf operators working in the region’s territory, five of the interviewees are listed. all the interviewees are in possession of the high school diploma; three (farm , farm and farm ) are also university graduates. sustainability , , of table . characteristics of farms. farm farm farm farm farm farm farm year of business start-up province ancona pesaro urbino macerata ancona pesaro urbino pesaro urbino pesaro urbino production systems horticulture, olives and fruit growing horticulture, olives and fruit growing livestock production and fruit growing arable crops and forage growing, viticulture arable crops fruit growing, horticulture, livestock production arable crops, horticulture, olive growing services offered social inclusion, work placement rehabilitation: education services training internships, rehabilitation; educational services agrinido, educational and teaching services retail trade services training internships, work inclusion work placement, social inclusion model of production organic organic organic organic organic organic (not certified) organic number of employed – – subscription to sf regional list operators (eroas) yes yes yes yes no yes no sustainability , , of . . . sf in the empirical cases all the firms have activated one or more sf projects to provide services (table ). their experiences turn out to be very differentiated according to the activities carried out and the groups of people targeted by the activities. for example, the core services provided by farm revolve around three main spheres: work inclusion, education and rehabilitation. the work sphere involves the disadvantaged (e.g., those with drug addictions; ex-prisoners) and/or disabled people in the production system; this is achieved through providing training internships and job placements. the educational and didactic sphere provides activities and lectures on biodiversity and the rural world in order to sensitize and raise awareness. in this sphere, children and middle and high school teenagers are the main targets; they are taken on a path of personal growth to help them develop and strengthen eco-friendly behavior from the early years of their lives. an example is the agrinido model, a kindergarten within a farm where children have daily lessons on nature and environmental protection. the rehabilitation sphere supports therapeutic services provided by public bodies by using animals and plants; direct contact with nature and animals is known to be therapeutic for people with mental and physical problems. for example, farm uses its donkeys to help rehabilitation through direct contact and care of them. farm , on the other hand, has developed sensory and cognitive activities aimed at those affected by blindness and deafness through using plants, fruits and animals. in addition, it is interesting to highlight how the beneficiaries (the mentally disadvantaged, children, the elderly, disabled people, prisoners, minors and adults with addiction problems) are differentiated among the different experiences, and how sf activities are aimed at all kinds of people. moreover, those involved do not always belong to the categories identified by the legislation of the marche region through pilot experiences concerning rural child care and active longevity workshop. in the experiences we examined, the mentally disadvantaged turn out to be most involved, whereas the pilot projects focus mainly on children and the elderly. in this heterogeneous picture, what connects is the path of personal and professional growth that the beneficiaries are embarked on, so that their skills of self-management and recovery can be developed through direct contact with nature and animals. according to the theoretical model outlined in the introduction concerning three different modalities of interaction between social and agriculture worlds, farm belongs in the first category. in its experience, the beneficiaries are not employed in the production system, but some areas of the farm are dedicated to educational and rehabilitation activities and, in this case, to a kindergarten. farm and farm belong in the third category, because they are social agricultural cooperatives initiated with the aim of actively employing disadvantaged people in their production system. in this category, the social and the agricultural aspects are close partners and collaborate to reach the shared target, namely, to increase social inclusion and integrate disadvantaged people in the community. for example, farm has started a project named emporio ae, that is, a network of cooperatives, associations and organic farms which uses a bottom-up approach to build a sustainable and fair market operating within the territory of the province of pesaro urbino, by valuing people’s relationships and raising consumer awareness. farm belongs in the second category, since the farm has drawn up an agreement with a social cooperative in the area to carry out social farming activities and it involves disabled people in simple farm activities, such as looking after the chicken coop and egg collection, horticulture and basketry. farm also belongs in this second category and has taken part in several projects provided by the university and public bids. nearly all the farms interviewed have obtained funds, mainly from public and regional bodies. for example, farm participated in the rdp, obtaining % of the cost coverage to expand the necessary structures (a sales point, a laboratory and a tasting room), as did farm , which obtained financial aid of € , to build the structure dedicated to the kindergarten. funds obtained are mainly of a structural nature. the case of farm differs in that it gained economic support from private foundations. in contrast, farm has not obtained any financial support. sustainability , , of table . implementation or direct knowledge of sf experiences and typology of sf. name farm farm farm farm farm farm farm social farming activities yes—different projects of sf mainly to offset periods when farming stops yes—thanks to the conversion of an unused building into a day care centre for the mentally disadvantaged yes—rehabilitation activities for disabled people with the support of their donkeys yes—agrinido project yes—emporio ae project yes—several sf projects yes—several sf projects main activities rehabilitation activities; biodynamic educational projects; work placement educational and rehabilitation activities with the support of animals; gardening; basketry and weaving activities assisted rehabilitation therapy with the support of animals; work placement; educational activities outdoor early childhood education production and retail educational farm, apiculture, active longevity, work placement, educational activities production and retail, environmental education work placement, therapeutic activities with vegetable garden beneficiaries mentally disadvantaged; children; teenagers; the elderly; prisoners and people with addictions mentally disadvantaged mentally disadvantaged; children; teenagers; adults with addiction problems children aged – mentally disadvantaged mentally disadvantaged, children, the elderly disabled people, prisoners, minors and adults with addiction problems project duration ongoing since ongoing since ongoing since ongoing since ongoing since ongoing since ongoing since typology of sf second first second first third second third strengths concrete support to disadvantaged people social inclusion of people with disabilities labour inclusion of people with disabilities farm as setting of educational activities plus diversification of farm activities innovative interaction between local farmers and public services labour inclusion of people with disabilities development of the rural areas, setting sf in public policy agenda weakness low financial support low financial support focus on regional pilot projects, neglecting people with disabilities social inclusion needs high costs of staff and management low financial support and limited to regional pilot projects distance and diversity between the social and agricultural field; lack of communication between them insufficient support for the viability of farms; difficulty of collaboration between farms and social cooperatives sustainability , , of all the interviewees agreed about the strengths and weaknesses of sf projects. the main strength pointed out was the direct support given by social agriculture to disadvantaged people. this allows them to have an active role in the community thanks to work inclusive activities. social agricultural cooperatives all share the common goal of enhancing social inclusion and the reintegration into society of disadvantaged people. moreover, the interviewees underlined how their passion for the job and human values are the conditions for creating value for all involved, from the beneficiaries to the community. according to farm and farm , among the strengths of the projects, it is possible to highlight the creation of relationships between different persons active in the region (institutions, farmers, social cooperatives, consumers) with positive implications also in terms of rural development. sf activities are also an innovative way to mitigate seasonal stop and diversify farming activities, thereby allowing farms to exploit their resources days a year. in addition, farms can expand their target groups towards consumers responsive to social issues. the main weakness concerns insufficient support from rural policies due to a lack of recognition of the role played by sf. economic neglect is certainly the most important point of agreement among all the interviewees; financial support is fundamental for the viability of these activities. since they operate in low value-added sectors and the incomes generated are insufficient to cover the costs and provide the necessary structures, direct support from public bodies is needed. this can be interpreted as a sign of neglect by the regional institutions, which seem to be only focused on its pilot projects, such as the model of agrinido and the longevità attiva. therefore, it is in this direction that more effort is needed. presence on the regional list (eroas) is a necessary condition but not enough to obtain financial support from the region. farm failed to get any public financial contributions, even though it had been carrying out different sf projects and it is on eroas. this restricts the viable management of these activities. regional funding is mainly of a structural nature and far from the real needs of sf operators, who require more regional presence in support of management and staff costs. . discussion and concluding remarks the results of the study confirm the main hypothesis of the research: sf policy and practices might be very heterogeneous, not only in different national contexts, as it has been argued in previous studies, but also within the same national and local level. the main italian national regulatory context (law no. / ) is quite recent and confirms the institutional autonomy of the regions in adopting regulatory and policy measures regarding sf. consequently, sf policy in italy is fragmented and highly differentiated at a regional level depending on timeframe, the authorities, activities, personnel and support. regional differences are rooted in different regional institutional regulatory frameworks. moreover, policy analysis shows several different modalities of interaction between social and agricultural aspects: different hybridization of social and agriculture actions that might be interpreted according to the suggested theoretical framework [ ]. sf policy regulation in lombardy, for example, clearly sets two different types of social farming that are coherent with the theoretical framework to be tested—the fattorie erogative as the first sf modality, where the vulnerable are beneficiaries of the services but do not participate in production; and fattorie inclusive, representing the second modality, where the disadvantaged play an active part in agricultural production. in other regional regulatory frameworks, the divisions are not so clear, but as the marche case study shows, the farms can be just the context for social activities such as in the agrinido and longevità attiva (first typology) or the farms can actively involve disadvantaged people in their productivity process (second typology) as part of the local case studies ( – and ). the social cooperative practices represent the third typology, where the farm organizes its activities to actively employ disadvantaged people in order to enhance their social inclusion and integration in the community, as in the local case studies and . the three sf model proposal represents a valid analytical tool to outline the differences in “connective agriculture” [ ]. sustainability , , of the heterogeneous regulatory context situation can represent a strength (in terms of adapting the regional provisions to the characteristics of the various territories as well as social needs of local communities) but also an obstacle to the development of sf experiences in italy; for example, the absence, in many regions, of specific support measures for the various sf projects. however, our analysis focused on the policy dimension at the regulatory level, while further studies should be carried out to evaluate effective implementations in all italian regions, mainly through specific further policy initiatives such as decrees. in the case study of the marche region, policies supporting sf are marked by a strong focus on two particular types of initiatives: the agrinido and the longevità attiva. these initiatives have led to a definition of high-quality pilot experiences, but they have struggled to spread within the area [ ]. in contrast, for other areas of competence of sf (in particular, socio-working insertion of disadvantaged people and food education), there is a substantial lack of support from regional policies. the analysis of the case studies of farms highlights a certain diversity, relative to the characteristics of the projects but also to awareness and involvement in sf. the data reveal divergent positions on how the social and the agriculture perspectives integrate. on the one hand, some give more importance to the social value of these activities, whereas others see, in social farming, new ways to diversify income and activities. social farming is giving a new value to disadvantaged people; this is not simply about a responsibility to help in the community, but rather real alternative working resources. since the potentialities are many, all the interviewees highlighted several challenges for sf in the future. more integration between the social and agricultural is required to enhance the viability of social farming. the perceptions about opportunities and challenges facing sf differs among the three different categories in the local case studies analyzed. sf, in the first and second typologies, consider social and labor inclusion for people with disabilities as the main strength, while sf in the third typology (social cooperative) highlights the innovative potentiality for rural development. two farms, the case studies no. and , representing second and third typology, stress the difficulties in the relationship between social and agricultural organizations, while all the interviewees struggled to get financial support from public bodies. the respondents in the case studies felt that there was a need for more public support, nevertheless, this aspect brings to light a complex issue concerning the need to evaluate the effectiveness and efficiency of sf policy and practices in italy to provide social services in rural areas and, more in general, to promote local development models that are sustainable also in economics [ – ]. nevertheless, the sf boundaries between agriculture and social services are still very blurry in the italian context: sf is mainly an agriculture and rural development issue, still far away from the welfare and social services network perspective [ ]. further analysis would be necessary, also at european level, to an in depth investigation of the relationship between agriculture and welfare policy and, therefore, on integrated public policy for the promotion of rural welfare development. now, the sf italian regulatory context is strongly characterized by the dominant perspective of farming multi-functionality, with low attention on highlighting the added value of sf for the society [ ]. there is a lack of analysis on the value of sf activities in terms of services that can be complementary to already existing social services, or totally new, such as the potentialities of domiciliary services in farming context, or any other social services offered within the farming framework to overcome the gap in the supply of local social services. social services within a sf framework might also bring important opportunities for creating qualified jobs in rural areas. in the last years, many farms and social cooperatives have diversified their activities, offering projects able to respond to the needs of local communities and also to the demands of an increasing number of aware consumers [ ]. these are experiences initiated from the bottom, also in the context of projects in the (co)building of alternative exchange mechanisms to those of modern supply chains [ ]. in this regard, the study should be further developed in the direction of a theoretical and methodological scheme for assessing the effective impact of sf projects, from the point of view of businesses and social workers, also by defining an indicator’s framework to evaluate non-commodity output [ , ]. sustainability , , of more in general, this study intends to contribute to academic research on sf as part of the broader debate on the various dimensions of sustainability, especially with reference to rural/marginal areas, leading to a wider reflection, especially in relation to the following. firstly, it is necessary to highlight the multiplicity of possible interactions between the social and agricultural in the experiences of sf [ ], which widen the range of sf initiatives where the social function is directly connected to agricultural activity, because the service can fully express and take advantage of its usefulness and potential through involvement in the farming practices of the beneficiaries [ ]. furthermore, sf is part of the ecological conversion to organic farming, contributing, as well to the improvement of the environment (improvements in biodiversity and soil fertility, higher water holding capacity, mitigation of the greenhouse effect, and adaptation to climate change), and the decrease in health risk [ – ]. this aspect is particularly important in sf experiences, where organic farming assumes a fundamental role in protecting the vulnerable (mentally disadvantaged, children, teenagers, etc.), reducing their exposure to chemical pesticides. for the firms, organic production also offers a further possibility for differentiation and improvement in products [ – ], also through use in public canteens, promotion in alternative food networks or the creation of dedicated platforms [ – ]. social farming is, therefore, a phenomenon capable of activating significant synergies for the development of many areas increasingly at risk of marginalization, providing effective answers to the demand for public services and, at the same time, possibilities in the construction of rural welfare and the creation of income and employment at farm level. author contributions: conceptualization, a.g. and e.v.; methodology, a.g. and e.v.; validation, a.g and e.v.; formal analysis, m.m.; investigation, m.m.; resources, e.v.; data curation, a.g.; writing—original draft preparation, m.m.; writing—review and editing, a.g. and e.v.; supervision, e.v.; project administration, a.g. this manuscript is a collaboration. however, a.g. is responsible for paragraph and ; m.m. and a.g. for paragraphs . .; m.m. and e.v. for paragraph . . paragraph should be attributed to a.g. and e.v. all authors have read and agreed to the published version of the manuscript. funding: this research received no external funding. acknowledgments: in this section you can acknowledge any support given which is not covered by the author contribution or funding sections. this may include administrative and technical support, or donations in kind (e.g., materials used for experiments). 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// // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ animals article animal-assisted therapy as a non-pharmacological approach in alzheimer’s disease: a retrospective study antonio santaniello ,* , susanne garzillo , alessia amato , mario sansone ,*, annalisa di palma , annamaria di maggio , alessandro fioretti and lucia francesca menna department of veterinary medicine and animal productions, federico ii university of naples, naples, italy; susannegarzillo@gmail.com (s.g.); alessiaamatovet@gmail.com (a.a.); fioretti@unina.it (a.f.); menna@unina.it (l.f.m.) department of electrical engineering and information technology, federico ii university of naples, naples, italy department of fragility, alzheimer center “villa walpole”, asl napoli centro, naples, italy; dipalmaannalisa@gmail.com regional reference center of urban veterinary hygiene (criuv), asl napoli centro, naples, italy; annamariadimaggio@libero.it * correspondence: antonio.santaniello @unina.it (a.s.); mario.sansone@unina.it (m.s.); tel.: + - - - (a.s.); + - - (m.s.) received: june ; accepted: july ; published: july ���������� ������� simple summary: non-pharmacological approach represents a valid therapeutic option as an alternative or supplement to pharmacological treatments in patients with alzheimer’s disease. a type of non-pharmacological therapy is animal-assisted therapy (aat), where the dog is a valid support to improving the quality of life of patients. in patients with alzheimer ’s disease, interaction with animals can reduce behavioral, stress, and mood disorders, and it can also stimulate some cognitive functions and give benefits to the psychosocial sphere. the purpose of this study was to apply, over a long period of time ( – ), aat interventions adapted to reality orientation therapy (rot), in groups of patients with mild-to-moderate alzheimer ’s disease. the work aimed to stimulate neuro-cognitive functions such as spatio-temporal orientation, memory, the ability to calculate, and language and to improve the depressive state of patients through the interaction and carrying out of structured games with the dog. the results obtained in the present study show an improvement in both cognitive function and mood of patients who carried out the therapy with the dog. in conclusion, we can therefore affirm how the study conducted confirms the potential of animal-assisted therapy as a non-pharmacological therapy in the treatment of deficits deriving from alzheimer’s disease patients. abstract: recently, many efforts have been made to assess the effectiveness of non-pharmacological therapies as an alternative or supportive option to conventional approaches. specifically, animal-assisted therapy (aat) has recently raised a great interest and large research efforts. this work represents a retrospective study carried out over seven years (from to ) in patients with mild-to-moderate alzheimer’s disease. the patients were divided into three groups: an experimental group that received aat interventions adapted to the formal reality orientation therapy (rot), a group receiving a formal rot, and a control group that did not perform any of the previous therapies. all sessions, for all patient groups, were held weekly for a total period of six months. the evaluation of cognitive function was performed through the mini mental state examination (mmse), while the geriatric depression scale (gds) assessed the depressive state. test administration to all patients was performed before the start of the first session (t ) and after the last session (t ). the results obtained showed an improvement in the values in the gds and mmse tests. the variations between the average mmse values between t and t were . ± . (sd), . ± . , and − . ± . in the aat group, rot group, and control (ctrl) animals , , ; doi: . /ani www.mdpi.com/journal/animals http://www.mdpi.com/journal/animals http://www.mdpi.com https://orcid.org/ - - - http://dx.doi.org/ . /ani http://www.mdpi.com/journal/animals https://www.mdpi.com/ - / / / ?type=check_update&version= animals , , of group, respectively. the variations between the average gds values between t and t were− . ± . (sd),− . ± . , and . ± . in the aat group, rot group, and ctrl group, respectively. based on our findings, we can therefore affirm how the study carried out confirms the potential of aat performed by federico ii model of healthcare zooanthropology, and particularly its efficacy in the treatment of cognitive deficits deriving from alzheimer’s disease. keywords: animal-assisted therapy; reality orientation therapy; non-pharmacological therapies; patients; dog co-therapist; zootherapist veterinarian . introduction alzheimer’s disease (ad) is a chronic degenerative disease that slowly and progressively destroys brain cells. this disease causes an irreversible deterioration of higher cognitive functions such as memory, reasoning, and language, to which behavioral disturbances are also added. all this leads to a total compromise of the functional state and the ability to carry out normal basic daily activities [ ]. dementia affects nearly million people worldwide and the number of cases is expected to reach over million by [ ]. the etiological mechanisms underlying ad remain unclear but are probably influenced by environmental and genetic factors [ ]. the main pathological changes observed in the brain tissue of alzheimer’s disease are given by the increase in the levels of the amyloid-β (aβ) peptide, which is deposited in the extracellular neuritic plaques, by the tau protein (p-tau) and by cerebral amyloid angiopathy due to the deposition of aβ on the walls of the vessels. in addition, in this condition, there is a widespread loss of neurons and synapses [ ]. although there has been great diagnostic progress in recent decades, much progress has been made in pathogenesis and clinical practice, but the triggering factors, onset, and progression of ad remain unclear [ ]. for this reason, medicine still needs more precise tools for an early diagnosis of this incurable disease [ ]. currently, pharmacological therapy is mainly based on symptomatic treatment. the approved drugs for ad improve only the symptoms of patients without changing the progression of the disease [ ]. ad could not only be a brain disorder but also a systemic disease; therefore, developing a specific treatment strategy from a systemic point of view can provide a new approach to the prevention and treatment of this pathology [ ]. the limited efficacy of pharmacological therapies and the plasticity of the human brain are the most important reasons for the growing interest in non-pharmacological therapies in alzheimer’s dementia. the possibility of having alternatives to pharmacological intervention increases the number of therapeutic options, therefore non-pharmacological practices should be the first-line approach to increase these therapeutic options by offering an effective support to the pharmacological therapies. a type of non-pharmacological therapy is animal-assisted therapy (aat), in which animals represent an essential part to improving specific outcomes of a patient. aat is used also to support conventional therapies, is performed by a multi-professional team with the involvement of the animal, and is customized for each patient [ ]. in the geriatric population, interaction with animals not only seems to reduce behavioral disorders (e.g., agitation, aggression), stress, and mood disorders (e.g., anxiety, apathy, depression) but also stimulates some cognitive functions [ ]. previous research has shown a significant benefit in long-term memory, verbal and non-verbal communication, and sensory stimulation. furthermore, this type of intervention satisfies some fundamental human needs such as attention and feelings of affection [ ]. menna et al. [ , ] showed how through repeated verbal, visual, and tactile multimodal stimulations, these interventions are applicable and effective in cognitive stimulation and emotional improvement of the patient, acting on mood and enabling non-medicalization of the symptom through “structured play” with the dog. animals , , of some studies have shown how aat can provide an alternative or an addition to pharmacological treatments to reduce the behavioral and psychological symptoms [ ] as well as agitation, depression, and apathy [ ] of patients with dementia. still other studies have highlighted how this type of intervention can provide significant benefits to improve the quality of life in people with ad [ ] and the psychosocial well-being in people with dementia [ ]. other studies have shown an improvement in cognitive impairment [ ] and an improvement in balance [ ] in patients with ad undergoing aat with a dog. the present work aimed to carry out a retrospective study that included all patients with mild-to-moderate ad, who in the period – received aat interventions adapted to the reality orientation therapy (rot) protocol as reported by menna et al. [ , ]. . materials and methods this study was performed during several periods at two alzheimer’s centers in southern italy from january to december . the head geriatrician suggested proposing the aat interventions when patients were not inclined to perform the routine non-pharmacological therapies. all patients gave and signed their informed consent for inclusion in the study (iso - cert. n. jsgq ). in addition, the study was performed according to the declaration of helsinki, and the protocol was approved by the federico ii university ethical committee. . . team according to federico ii model of healthcare zooanthropology, the team was formed by the zootherapist veterinarian and the co-therapist dog (iso - cert. n. didasgq ) [ , ]. for the choice of dogs involved in the work of aat, the methodology reported by menna et al. [ , , ] was used. the co-therapist dogs underwent regular health and behavioral checks, carried out in collaboration between our department and public veterinary service of the “asl napoli ”. in addition, for each session, disinfectant wipes (chlorhexidine, ethylene diamine tetra acetic acid-tromethamine (tris-edta), zinc gluconate, and glycerin) were used to clean the coat, the claws, and the tail of the dog to avoid the transmission of zoonotic agents (e.g., bacteria, fungi, parasitic elements) [ – ]. . . operative method . . . study design and participants the head geriatricians of the alzheimer’s centers randomly selected a total of patients ( women, men) with mild-to-moderate ad and without behavioral disorders. subsequently, all patients were divided in three groups as follows: an experimental group receiving aat interventions adapted to the formal rot (aat group), a group that received a formal rot (rot group), and a control group that did not perform any of the previous therapies (ctrl group). the subjects had a mean age of . ± . (sd) years (range: – years) and were homogeneous for ad diagnosis and depressive status (mean ± sd of mini mental state examination (mmse): . ± . and mean ± sd of -item geriatric depression scale (gds): . ± . , respectively). the aat group comprised subjects ( men, women), enrolled according to the following criteria: the absence of fear or allergy the dog; the will to interact with the dog; the presence of animals in the patient’s personal history (e.g., if the patient had a dog in the past). to this group a cycle of aat interventions based on the protocol of formal rot [ , ] was addressed. the rot group comprised patients ( men, women), engaged exclusively in activities of formal rot [ – ]. finally, patients ( men, women) formed the ctrl group participating in no stimulations. animals , , of . . . methodology all sessions (for all patient groups) were performed weekly, with a total duration of min per session, for a total period of months. in particular, the aat sessions had a total duration of min, of which about min of activities were carried out with the co-therapist dog. as in a session of formal rot, the aat adapted session aimed to stimulate cognitive functions such as attention, language skills, and spatio-temporal orientation. the activities with the dog were performed according to the rot intervention techniques through the operative sequence shown in comparison in table . in the first step, the setting structuring, presentation of the dog/zootherapist veterinarian dyad, and stimulation of cognitive functions through information and characteristics of the dog (e.g., size, coat color, hair type, eye color, and ear shape) took place; in the second step, the zootherapist worked on the patient’s orientation in space and time by structured and cadenced play activities with the dog in the setting (i.e., hide-and-seek and find the ball) and on the stimulation of memory functions through the telling a story about their own dog or other pets; in the third step, the zootherapist continued the patient’s memory stimulation (attention) through structured play with the dog per associations and understanding of language through storytelling; in the fourth step, the session was closed. table . operational sequence and duration of each animal-assisted therapy (aat) session with the dog addressed to the patients based on the formal reality orientation therapy (rot) protocol by menna et al. [ ]. formal rot aat session duration step . structuring the setting . presenting the therapist/patient . stimulating cognitive function . structuring the setting . presenting the zootherapist/dog/patient . stimulating cognitive function through repeated requests for information about the dog (e.g., name, breed, age, and sex) ′ step . temporal orientation (day, month, year, and season) . spatial orientation (place, structure, floor, room, city, country, and region) . stimulation of memory . temporal orientation (day, month, year, and season) . spatial orientation (place, structure, floor, room, city, country, and region); min of play structured activities with the dog (e.g., hide the ball) . stimulation of memory by telling a story about their own pets ′ step . stimulation of memory (attention) . understanding of language (story) . structured play/interaction with the dog (attention: fetch, hide the ball, caring for the dog) . understanding of language (story: giving the dog commands and waiting for the execution of the command) ′ step . closing speech (ritualized) . closing speech (ritualized: washing hands) ′ . . . measurements in the present study the neuro-cognitive functioning and the depressive state of the patients were evaluated. the evaluation of neurophysiological parameters was performed through the mini mental state examination (mmse) test widely used for the investigation of intellectual efficiency disorders and the presence of cognitive impairment [ , ]. the test is made up of items (questions) that refer to seven different cognitive areas to evaluate spatio-temporal orientation, memory, attention, ability to calculate, and language. the assessment of the depressive state was carried out using the -item geriatric depression scale (gds), a hetero- and self-administered instrument for monitoring the degree of depression in the elderly [ ]. these tests were administered to all patients enrolled at time (t ) before the start of each intervention and at time (t ) after the last session (six months later). animals , , of . . data analysis with the aim to assess therapies’ differences, analysis of covariance change (ancova-change) was used [ ]. ancova-change allows to manage repeated measures from several groups in order to test for differences in pre- and post-treatment changes. computations were performed in r [ ] using the package [ ]. pairwise comparison using wilcoxon rank sum test with bonferroni correction was used in order to assess differences between each therapy pair. . results a total number of patients from to was included in our retrospective study. as reported in table , all the enrolled patients were homogeneous for cognitive impairment and depressive symptoms, while they were heterogeneous for age and sex. table . summary of the characteristics of the study population. group no. of patients mmse (mean ± sd) gds (mean ± sd) age (years) mean ± sd f m t aat . ± . . ± . . ± . rot . ± . . ± . . ± . ctrl . ± . . ± . . ± . total . ± . . ± . ± . mmse = mini mental state examination, gds = geriatric depression scale; aat = animal-assisted therapy; rot = reality orientation therapy; ctrl = control; f = females; m: males; t : time ; sd: standard deviation. as the objective of this study was to assess the amount of variation of gds or mmse due to therapy, in the following using ∆ (delta), we denote the variation of a measure after treatment: for example, ∆-gds = gds(after) − gds(before); a positive ∆-mmse indicates an increase of mmse after treatment. the ancova-change tested the hypothesis that, with reference to a specific measure, there were no differences among the three groups (i.e., the three therapies yield the same amount of variation). in our study, ancova-change showed that there were differences between the three groups as regards ∆-gds and ∆-mmse with p-value of . × − and . × − , respectively. further, after ancova it is necessary to identify which groups are different from each other (there are three possible pairwise comparisons). to do so we used the wilcoxon rank sum test (with bonferroni correction). first, as regards ∆-gds, the rot and aat were not significantly different (p = . ), while the aat and ctrl were different (p < . ); further rot and ctrl were also different (p = . ). second, as regards ∆-mmse, all pairwise comparisons were significant (p = . ). in figures and , the boxplots showing ∆-gds and ∆-mmse are shown. first, the average ∆-mmse (mmse increase) in the aat group was + . ± . (sd), in the rot group it was + . ± . , and in the ctrl group it was − . ± . . second, the average ∆-gds (gds decrease) in the aat group was − . ± . (sd), in the rot group it was − . ± . , and in the ctrl group it was . ± . . we can summarize the two main results as follows: first, the amount of mmse increase due to aat was significantly higher than rot and ctrl; second, the amount of gds decrease due to aat was not statistically different from rot although inspection of figure showed an important trend. animals , , of animals , , x for peer review of figure . boxplot of differences before and after treatment for geriatric depression scale (gds). each black dot is a patient. empty circles are outliers with respect to the main distribution. horizontal solid line represents the median of distribution. abbreviations: ctrl = control; rot = reality orientation therapy; aat = animal-assisted therapy. figure . boxplot of differences before and after treatment for mini mental state examination (mmse). each black dot is a patient. empty circles are outliers with respect to the main distribution. ctrl rot aat − − de lta g d s ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●● ● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ● ● ● ctrl rot aat − − de lta m m s e ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●●● ● ● ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●● ● ●● ● ● ●● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● figure . boxplot of differences before and after treatment for geriatric depression scale (gds). each black dot is a patient. empty circles are outliers with respect to the main distribution. horizontal solid line represents the median of distribution. abbreviations: ctrl = control; rot = reality orientation therapy; aat = animal-assisted therapy. animals , , x for peer review of figure . boxplot of differences before and after treatment for geriatric depression scale (gds). each black dot is a patient. empty circles are outliers with respect to the main distribution. horizontal solid line represents the median of distribution. abbreviations: ctrl = control; rot = reality orientation therapy; aat = animal-assisted therapy. figure . boxplot of differences before and after treatment for mini mental state examination (mmse). each black dot is a patient. empty circles are outliers with respect to the main distribution. ctrl rot aat − − de lta g d s ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●● ● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ● ● ● ctrl rot aat − − de lta m m s e ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●●● ● ● ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●● ● ●● ● ● ●● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● figure . boxplot of differences before and after treatment for mini mental state examination (mmse). each black dot is a patient. empty circles are outliers with respect to the main distribution. horizontal solid line represents the median of distribution. abbreviations: ctrl = control; rot = reality orientation therapy; aat = animal-assisted therapy. animals , , of . discussion the statistical evaluation of the data collected and processed with anova found statistical significance; in fact, the object data demonstrate how the interaction with the dog represents a positive stimulus for the patient, measurable through an improvement of the values in the gds and mmse tests. the values obtained through the gds test, administered at t and t , to all the groups involved in the study, also showed an improvement in the mood tone evidenced by the decreasing variation of the values at t , with a difference which is however statistically insignificant between the rot and aat groups. aat, on the other hand, proved to be particularly more effective than rot if the data relating to the mmse test are observed. the ∆ that is created between the test results detected at t and t here is particularly marked between the rot and aat groups. this suggests that in the field of dementia, aat produces surprising results compared to reality-oriented therapies that do not involve the participation of co-therapist animals in the setting. these are tangible results, as the data measured with evaluation tests (particularly, mmse) demonstrate how the psychomotor attitude and autonomy improve thanks to the motivation and positive feelings that the intervention of aat can stimulate in the patient. to our knowledge, comparative data regarding aat with the dog adapted to rot and aimed at alzheimer’s patients are very limited. in the consulted literature about aat in alzheimer’s disease, other studies usually provide experimental designs with two groups of patients (experimental and control group) or with only the experimental group (aat). in these studies, the cognitive and mood improvements from dog activities were measured by changes in the mmse and gds tests at t and t . in a pilot study with the same experimental design conducted by menna et al. [ ], patients were divided in three groups: aat (adapted to rot), rot, and control. the intervention lasted a total of six months. the aat group and rot group showed a small improvement in the mood, according to gds scores. particularly, the aat group improved from . at t to . at t while the rot group improved from . at t to . at t . moreover, an improvement in cognitive impairment, as measured by the mmse, was observed. in the aat group, the mean value of mmse was . at t and . at t , and in the rot group, it was . at t and . at t . differently, in the control group, the average values of both tests remained almost unmodified. a similar study performed by menna et al. [ ] highlighted the efficacy of aat adapted to formal rot in alzheimer’s patients, by evaluating the gds and mmse values and by monitoring salivary cortisol, the latter as a measure for stress evaluation and a potential neurodegenerative disease biomarker. the intervention lasted three months. mmse and gds scores in the aat group werr significantly different before and after the intervention (increased and decreased respectively); instead, the opposite occurred in the ctrl group. for the aat group, mmse increased and gds decreased significantly (p < . , test for paired data) after the whole cycle of therapy; for the ctrl group mmse decreased while gds increased but not significantly. in their study, kanamori et al. [ ], performed aat for a total of six biweekly sessions. the aat group consisted of seven subjects and the control group of subjects. in a comparison between mmse scores at baseline and those measured three months later, the average score before aat (baseline) was . (± . ) and . (± . ), respectively. differently, in the control group involving patients, before the average score (baseline) was . (± . ) and three months later it was . (± . ). moretti et al. [ ] evaluated the effects of pet therapy on cognitive function, mood, and perceived quality of life on elderly inpatients affected by dementia, depression, and psychosis. mmse and gds were administered to patients (pet group) and controls (control group). the aat intervention lasted six weeks. both groups showed improvement regarding gds and mmse. in the pet group, depressive symptoms by gds values decreased by % (from . to . , p = . ), while the mean mmse score increased by . (p = . ). moreover, the between-group comparison showed a positive effect of pet therapy intervention on gds (p = . ). motomura et al. [ ] conducted a study on only eight patients admitted to a local nursing home. aat with two dogs was carried out for h over four consecutive days. although the intervention of aat influenced the mental and apathetic state of patients, the results indicated no significant difference in the gds and mmse before and after animals , , of therapy. wesenberg et al. [ ] performed a within-subject design with two different interventions, animal-assisted intervention (aai) and control, and several measurement times (baseline, after three months, and after six months). nineteen patients with dementia were included in the aai (with a dog), and in the control intervention. both interventions were performed as weekly group sessions, over a period of six months. patients had moderate-to-moderately severe dementia, according to mean mmse score at baseline of . . as expected by the authors, during the six months, the mmse mean scores decreased to a mean of . . finally, in a study by thodberg et al. [ ], a total of elderly residents in four nursing homes (median age: . years) were randomly assigned to get biweekly visits for six weeks from a person accompanied by either a dog, a robot seal (paro), or a soft toy cat. the effects of different interventions were evaluated by mmse, gottfries–bråne–steen scale (gbs), and gds. the visit type did not affect the mmse (f . = . ; p > . ), gbs (f . = . ; p > . ), or gds (f . = . ; p > . ) recorded after the last visits. the performed tests, however, changed over the experimental period, according to the decrease in the mmse score (s = − ; p < . ) and increase in the gbs score (t = . ; p < . ), both indicating an overall worsening in patients’ cognitive impairment. interestingly, the gds score decreased (s = − ; p < . ), showing the correlated decrease of depressive symptoms during the experimental period. in summary, previous studies have shown results that are sometimes encouraging to use animal-assisted therapy (aat). however, more extensive studies should be conducted to strengthen the existing evidence, by measurement of biochemical parameters such as cortisol, for example [ ]. the intensity and procedures of therapy should be standardized for a better interpretation of the benefits for patients [ ], considering also the main role of the dog as co-therapist [ ]. in addition, it would be desirable to standardize the methodologies used in terms of alzheimer’s diagnosis and age of the patients, always include a control group, use a wider battery of measurement tests for the cognitive impairment and mood, establish an increased frequency of sessions (preferably weekly), and plan longer-lasting interventions. in this regard, it would be desirable to evaluate the effects of the aat in the same group of patients for periods of at least one or two years, in order to measure its possible long-term benefits. limits to interpret the data obtained from the experimental study as a whole and adequately, some intrinsic limitations of the work must be taken into consideration, such as the numerical imbalance of the patients who received the aat, the difference between the number of male and female participants, the total number of patients analyzed, and the wide age range of patients involved. it is also necessary to consider the limit given by the duration of the study: the intervention assisted by the animals was in fact carried out in a span of only six months and, for a more detailed investigation, it would be necessary to extend this period. . conclusions in conclusion, the results obtained by applying the methodology proposed by the federico ii model of healthcare zooanthropology, during the indicated study period, demonstrate how the patients subjected to aat showed an improvement in both cognitive function and mood (e.g., changes in mmse values and gds, respectively). therefore, we propose the use of aat (with the dog) adapted to a protocol of formal rot, as a non-pharmacological therapy above all in the treatment of cognitive deficits deriving from alzheimer’s disease. in addition, this type of intervention could be particularly useful when alzheimer’s patients show reluctance to perform daily stimulation activities or are stalled in other non-pharmacological therapies. author contributions: conceptualization, a.s. and l.f.m.; methodology, a.s. and l.f.m.; resources, a.d.m. and a.d.p.; software, m.s.; investigation, a.s., s.g., and a.a.; data curation, a.s. and m.s.; writing—original draft preparation, a.s. and s.g.; writing—review and editing, a.f., m.s., and l.f.m.; supervision, l.f.m. all authors have read and agreed to the published version of the manuscript. animals , , of funding: this research received no external funding. conflicts of interest: the authors declare no conflict of interest. references . serrano-pozo, a.; frosch, m.p.; masliah, e.; hyman, b.t. neuropathological alterations in alzheimer disease. cold spring harb. perspect. med. , , a . 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[crossref] © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . /ijerph http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /ijerph http://dx.doi.org/ . /ani http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . / x. . http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . / - - http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /j.arr. . . http://dx.doi.org/ . / - ( ) - http://dx.doi.org/ . /j. - . . .x http://dx.doi.org/ . /j v n _ http://dx.doi.org/ . / - . https://www.r-project.org/ https://cran.r-project.org/package=hh http://dx.doi.org/ . / http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /j. - . . .x http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /j. - . . .x http://dx.doi.org/ . /psyg. http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /psyg. http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	materials and methods 	team 	operative method 	study design and participants 	methodology 	measurements 	data analysis 	results 	discussion 	conclusions 	references a conceptual framework to address administrative and infection control barriers for animal-assisted intervention programs in healthcare facilities: perspectives from a qualitative study letter to the editor a conceptual framework to address administrative and infection control barriers for animal-assisted intervention programs in healthcare facilities: perspectives from a qualitative study kathryn r. dalton phd , peter campbell mhs , william altekruse mhs , roland j. thorpejr. phd , jacqueline agnew phd , kathy ruble phd , karen c. carroll md and meghan f. davis phd , department of environmental health and engineering, johns hopkins university bloomberg school of public health, baltimore, maryland, school of medicine, university of maryland, baltimore, maryland, school of social work, university of maryland, baltimore, maryland, department of health, behavior and society, johns hopkins university bloomberg school of public health, baltimore, maryland, department of pediatric oncology, johns hopkins university school of medicine, baltimore maryland, division of medical microbiology, department of pathology, johns hopkins university school of medicine, baltimore, maryland and department of molecular and comparative pathobiology, johns hopkins university school of medicine, baltimore, maryland to the editor—animal-assisted intervention (aai) programs, used extensively in healthcare facilities, have numerous reported benefits to patients. – these programs have increasingly been used for healthcare workers, as a targeted intervention to reduce occu- pational stress and burnout symptoms. however, barriers, specifi- cally infection control concerns, prevent aai programs from being used in many hospitals and among their diverse populations. this has become more apparent during the coronavirus disease (covid- ) pandemic, and many aai programs have been sus- pended due to apprehension about coronavirus spread, despite the critical need for proven mental health support programs for patients and employees during this taxing period. this qualitative study aimed to capture opinions pertaining to benefits and concerns related to aai from individuals directly involved in hospital programs, particularly occupational health benefits for hospital staff and infectious disease concerns. we report on these key stakeholders’ perspectives and experiences and, through these reports, present a conceptual framework to rec- ommend measures to better implement and support these pro- grams. although we focused our research on infectious diseases broadly, participant responses and our research findings are reflec- tive and applicable to concerns for aai programs related to the covid- pandemic. as part of a larger study on hospital aai program-related risks and exposures, we interviewed healthcare workers and therapy animal handlers from multiple hospitals. we thematically coded interview transcriptions based on deductive programmatic frame- work analysis. the study underwent research ethics review and approval. further details on methodology and study participants have been previously published. participants reported that these programs did benefit hospital staff by reducing stress and bolstering morale. they felt this led to an improvement in job performance through increased employee engagement, and by providing an “additional tool in their toolbox” for improved patient care. finally, these programs were reported to be a gateway to other therapy programs, such as mental health counseling. in spite of these cited benefits, partic- ipants identified administrative barriers to implementation, such as balancing clinical duties. they conveyed that these obstacles could be overcome with appropriate leadership, and from collabo- ration across the hospital and management “buy-in,” to under- score the value of staff inclusion in aai. infection concerns were reported as a frequent barrier to pro- gram implementation, both for patient and healthcare worker use. participants described their concern of the dog serving as an inter- mediary vector of pathogen spread among patients, staff, and the hospital environment. however, many participants, both pet therapy handlers and healthcare workers, felt this risk was minimal due to effective control measures, which should target the animal, the patients, and the hospital environment, designed with practical input from multiple stakeholders. the primary facilitator to appro- priately enact control measures was the designation of individuals responsible for safety, and relevant training for all individuals involved with these programs about potential infectious risks and mitigation strategies. based on these reports, we developed a conceptual framework (fig. ), adapted from the consolidated framework for implementation research and the environmental protection agency’s risk management framework, which links our major themes in the context of program implementation. hospital objec- tives and needs feed into program implementation, accomplished by addressing program barriers through facilitators (blue box). perceived barriers, both administrative and infection risk as described, can be addressed through a risk management frame- work (yellow box): ( ) identify the hazard (eg, infection concerns), ( ) assess and characterize said hazard, and ( ) hazard manage- ment through applying and monitoring control measures. this approach results in an adaptive protocol based on individual pro- gram needs. critical to the design and execution of program imple- mentation is multiple stakeholder and hospital leadership author for correspondence: kathryn r. dalton, e-mail: kdalton @jhu.edu cite this article: dalton kr, et al. ( ). a conceptual framework to address administrative and infection control barriers for animal-assisted intervention programs in healthcare facilities: perspectives from a qualitative study. infection control & hospital epidemiology, https://doi.org/ . /ice. . © the author(s), . published by cambridge university press on behalf of the society for healthcare epidemiology of america. this is an open access article, distributed under the terms of the creative commons attribution licence (http://creativecommons.org/licenses/by/ . /), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited. infection control & hospital epidemiology ( ), – doi: . /ice. . downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://orcid.org/ - - - mailto:kdalton @jhu.edu https://doi.org/ . /ice. . http://creativecommons.org/licenses/by/ . / https://doi.org/ . /ice. . https://crossmark.crossref.org/dialog?doi= . /ice. . &domain=pdf https://www.cambridge.org/core engagement (red boxes) to ensure diverse, comprehensive input on protocols. implementing adaptive aai programs, through targeted facilitators, results in program benefits for both patients and staff, such as those listed in the figure, since many program barriers and facilitators apply to both. this ultimately creates a reinforcing feed- back loop improving program implementation by substantiating hospital needs. our qualitative study provided insight into appropriate aai program implementation, both directed towards patients and hcw, based on the unique experiences and perspectives from individuals actively involved in these programs with crucial roles in their administration. through participant reports and develop- ing our conceptual framework, we identified major areas for pro- gram improvement. first is the need for a tailored risk assessment to understand barriers unique to individual programs, hospitals, departments, and patient populations, to develop adaptive proto- cols. secondly, leadership roles, or “champions,” are essential to advocate for the programs’ worth, plus communicate and ensure adherence to policies critical to success. lastly, collaboration across the hospital is needed to design protocols for aai with input from multiple stakeholder groups to ensure that program guidelines are comprehensive and practical. this conceptual framework can serve as a scaffold for hospitals wishing to start or extend aai programs, and it is noteworthy for hospital administrators, healthcare epidemiologists, and occupa- tional health specialists. more currently, this framework can be used to design plans to restart suspended aai programs due to covid- , as well as potentially other patient well-being volun- teer programs. the detailed level of contextual qualitative data obtained from our participants can be utilized to develop a prac- tical quantitative survey to collect data from a wider scope of hos- pitals and participant groups to increase our recommendations’ generalizability. the results of this, and future work, will have significant implications in the utilization and preservation of these valuable aai programs. acknowledgments. the authors thank drs kaitlin waite and sharmaine miller for their assistance. we also thank the research participants for their cooperation. financial support. no financial support was provided relevant to this article. conflicts of interest. all authors report no conflicts of interest relevant to this article. references . bert f, gualano mr, camussi e, pieve g, voglino g, siliquini r. animal assisted intervention: a systematic review of benefits and risks. eur j integrat med ; : – . . kamioka h, okada s, tsutani k, et al. effectiveness of animal-assisted therapy: a systematic review of randomized controlled trials. complement ther med ; : – . . waite tc, hamilton l, brien wo. a meta-analysis of animal-assisted inter- ventions targeting pain, anxiety and distress in medical settings. complement ther clin pract ; : – . . abrahamson k, cai y, richards e, cline k, o’haire me. perceptions of a hospital-based animal assisted intervention program: an exploratory study. complement ther clin pract ; : – . . dalton kr, altekruse w, campbell p, et al. perceptions and practices of key worker stakeholder groups in hospital animal-assisted intervention programs on occupational benefits and perceived risks. medrxiv . doi: . / . . . . . consolidated framework for implementation research. center for clinical management research website. https://cfirguide.org/. published . accessed janaury , . . framework for human health risk assessment to inform decision making. us environmental protection agency website. https://www.epa.gov/risk/ framework-human-health-risk-assessment-inform-decision-making. published . accessed january , . figure . conceptual framework for hospital animal-assisted intervention program implementation adapted from cfir and epa risk framework (yellow box). blue box = program barriers and facilitators, grey box = program implementation, red boxes = external influences. circled arrow with r = positive reinforcing feedback loop, where appropriate program implementation leads to an increase in program benefits, which validates and increases hospital needs for these programs. * most commonly documented patient benefits from systematic reviews of previous literature (bert et al., ; kamioka et al., ; waite et al., ) kathryn r. dalton et al downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. https://doi.org/ . / . . . https://doi.org/ . / . . . https://cfirguide.org/ https://www.epa.gov/risk/framework-human-health-risk-assessment-inform-decision-making https://www.epa.gov/risk/framework-human-health-risk-assessment-inform-decision-making https://www.cambridge.org/core 	a conceptual framework to address administrative and infection control barriers for animal-assisted intervention programs in healthcare facilities: perspectives from a qualitative study 	references the benefits of and barriers to using a social robot paro in care settings: a scoping review research article open access the benefits of and barriers to using a social robot paro in care settings: a scoping review lillian hung , * , cindy liu , evan woldum , andy au-yeung , annette berndt , christine wallsworth , neil horne , mario gregorio , jim mann and habib chaudhury abstract background: given the complexity of providing dementia care in hospitals, integrating technology into practice is a high challenge and an important opportunity. although there are a growing demand and interest in using social robots in a variety of care settings to support dementia care, little is known about the impacts of the robotics and their application in care settings, i.e., what worked, in which situations, and how. methods: scientific databases and google scholar were searched to identify publications published since . the inclusion criteria consisted of older people with dementia, care setting, and social robot paro. results: a total of papers were included in the review. content analysis identified key benefits of and barriers to the use of paro. main benefits include: reducing negative emotion and behavioral symptoms, improving social engagement, and promoting positive mood and quality of care experience. key barriers are: cost and workload, infection concerns, and stigma and ethical issues. this review reveals research gaps: (a) the users’ needs and experiences remain unexplored, (b) few studies investigate the process of how to use the robot effectively to meet clinical needs, and (c) theory should be used to guide implementation. conclusions: most interventions conducted have been primarily researcher-focused. future research should pay more attention to the clinical needs of the patient population and develop strategies to overcome barriers to the adoption of paro in order to maximize patient benefits. keywords: dementia care, robotics, older adults, scoping review background to-date, healthcare settings in canada and worldwide are under tremendous strains from the rapidly growing demand associated with the aging population and chronic conditions, such as dementia. the public ex- pects healthcare organizations to keep pace with the changing societal needs and serve the elderly population with compassion and good care. clinicians and care workers in hospitals and care facilities face challenges in providing good care for the growing numbers of people with dementia who may also have complex medical and mental health needs. in the hospital setting, research has shown that behavioral and psychiatric symptoms are common in people with dementia, affecting % of those with dementia at some point during their stay in acute care, which often leads to their being prescribed anti- psychotic drugs [ ]. given the complexity of providing dementia care, adopting and integrating technology into practice could be seen as an important opportunity; however, it can also be perceived as a significant challenge. researchers and scientists have been exploring ways to utilize robotic technology to aid in the care of older adults. a few robots (e.g., physically-assistive robots, pars) were made to perform physical tasks, such as body lifting. others such as social robots (or called so- cially-assistive robots, sars) were created to support © the author(s). open access this article is distributed under the terms of the creative commons attribution . international license (http://creativecommons.org/licenses/by/ . /), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated. * correspondence: lillian.hung@vch.ca gerontology research centre, simon fraser university, room , - west hastings street, vancouver, bc v b k , canada university of british columbia, vancouver, canada full list of author information is available at the end of the article hung et al. bmc geriatrics ( ) : https://doi.org/ . /s - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf http://orcid.org/ - - - http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / mailto:lillian.hung@vch.ca the social and psychological needs of the elderly. social robots may serve multiple functions such as affective therapy, cognitive training, social facilitator, companion- ship and physiological therapy [ ]. specifically, the social robot - paro (a baby harp seal robot) was designed as a pet therapy for older people with dementia [ ]. we are interested in paro because it has been commercialized and used in care settings for more than a decade in multiple countries. also, there has been more research conducted on paro compared to other animal-like robots [ ]. real life animals offer benefits in supporting the well- being of the older people with dementia, but animals are not always amenable to care settings [ , ]. some people may be allergic to pet dander, or be afraid of animal bites. robotic pets require less care and are safe to use. paro has demonstrated benefits in reducing stress, anxiety, and antipsychotics use among older people with dementia [ – ]. although there is a growing evidence base indicating the benefits, resistance and antipathy to using the social robot in care settings are persistent [ ]. there is a need for gaining an in-depth understanding towards the application of paro, i.e., what worked, in which situation, and how. while advancements in artifi- cial intelligence offers new possibilities to support and improve dementia care, the uptake of robotic technology has remained low in hospital and other care settings [ ]. at present, there has been no comprehensive review performed to examine the effectiveness of the social robot paro and how paro can be used to its full potential and to help meet the pressing challenges clinicians face in everyday clinical practice. methods this review aims to map out the empirical evidence on the key benefits of paro, and to identify barriers that may impede the adoption of this social robot. the ques- tions guiding this review are: what has been reported in the literature regarding the benefits of paro in demen- tia care? what are the barriers to adopting paro in the care setting? a scoping review is appropriate because it provides an overview of relevant literature in a field that is under-developed and to identify the key themes and contexts within a research topic [ ]. following the steps outlined by joanna briggs institute, this scoping review involved five stages: ( ) conducting broad searches, ( ) refining selection criteria, ( ) reviewing search results, ( ) mapping literature, and ( ) summarizing results [ ]. our project team consists of: patients (n = ) and families (n = ), two physicians, an occupational ther- apist and a nurse researcher. the search strategy involved identifying published journal articles and grey literature to cover the breadth of the available literature that reported the benefits of and barriers to using the social robot paro in care settings. the search began in june , and the latest search was conducted in september . we included relevant literature regardless of methodo- logical quality because majority of the studies in the exist- ing literature have small sample size and/or exploratory. the review and analysis procedures were as follows: ( ) conducting broad searches to identify potentially relevant literature: the first four authors independently conducted the literature searches and screened titles, abstracts, and references. we undertook a wide range of literature searches using the following databases: medline, ageline, psycinfo, and cumulative index to nursing and allied health literature (cinahl). a university librarian was consulted. we looked at literature written in english from year the through september . search terms included: social robot, paro, alzheimer disease and dementia. also, we searched google scholar and checked the references cited in relevant publications. ( ) refining selection criteria: inclusion and exclusion criteria were applied to select articles. duplication was removed. articles were included if they: (i) focused on older people with dementia, (ii) targeted effects of paro, and (iii) were studied in care settings (e.g., nursing homes, hospitals, and day care). both quantitative and qualitative studies were included. records were excluded due to: absence of any focus on older people with dementia, did not report paro, was conducted outside a care setting (e.g., at home). a bibliographic reference management tool, mendeley was used to ensure that all references and articles were systematically accounted. ( ) reviewing search results: three authors (blinded for review) read the included articles to gain a preliminary sense of concepts of the whole. afterwards, we developed an initial coding framework to code deductively while remained open to concepts that emerged inductively for new codes. a data analysis software, nvivo was used to conduct coding for full-text review in selected articles. the first three authors conducted content analysis [ ]. ( ) mapping literature according to conceptual areas of interest: we mapped the papers by domains: author and country, setting, participants, research design, measures, benefits, as well as barriers. see additional file : summary of included studies. in research meetings, patient and family partners in the research team took part in analyzing the extracted data sorted according to potential themes. we compared and discussed interpretations to hung et al. bmc geriatrics ( ) : page of resolve conflicts. the coded data were then evaluated, refined and collated into categories to develop the final themes. ( ) summarizing results: three authors (blinded for review) wrote the first draft of the manuscript to summarize the results. all authors critically reviewed and participated in manuscript revisions. results the database search yielded publications and an add- itional from reference checking and google scholar search. after screening and inclusion assessment, thirty- four papers were assessed for full-text review. five more articles were excluded due to content not relevant to the review questions. a total of publications (n = ) were included in the final review. figure shows the review flow diagram. of the included publications (n = ), items with quantitative experiential designs reported positive out- comes. common outcome measures were agitation, anx- iety, depression, loneliness, cognition, and quality of life. the majority of studies’ scope was relatively small and exploratory. a recent australian study with older people with dementia from long-term care facilities was an exception [ ]. most research reported the use of paro in nursing homes (n = ). more publications were authored in australia, us, and japan. only one canadian study (n = participants) was found [ ]. only one study reported family perspective [ ] and staff ex- perience [ ]. content analysis [ ] identified reported benefits of and barriers to the use of paro. our analysis serves to identity the key benefits (some of them over- laps and interacts) and core barriers. see fig. for the final themes. benefits key benefits include: reducing negative emotion and behavioral symptoms, improving social engagement, and promoting positive mood and quality of care ex- perience. table shows the benefits of paro re- ported in publications. reducing negative emotion and behavioral symptoms one of the common targets for interventions in dementia is alleviating negative emotions and reducing behavioral symptoms. a recent australian rct compared paro with a plush toy found a statistical significant but modest effect in reducing behavioral and psychological symptoms of dementia [ ]. other studies in norway, us, and new zealand also found that the social robot helped in the re- duction of physical and verbal agitation [ – ]. paro was also found to improve anxiety and improve depressive symptoms [ , , ]. evidence also indicated that the utilization of paro reduced the use of psychotropic fig. flow diagram for the scoping review process hung et al. bmc geriatrics ( ) : page of medication [ , – ], and combined with reduced wan- dering may reduce the falls risk [ ]. these improvements suggested that the robot may result in reducing staff stress and caregiver burnout [ ]. some studies have reported the benefits in psychological and behavioral symptoms of dementia were more pronounced in those with less cogni- tive impairment [ , ], and in individual as opposed to group settings [ ]. other studies showed older people with moderate and with severe dementia had a significant effect with paro [ , ]. the evidence was inconsistent and indicated the need for further research. it is also im- portant to point out that the reporting of stages of demen- tia can be problematic in the literature as different cutting scores and scales were used in different studies. despite these positive findings, it was noted that staff in the residential care setting were challenged to use paro effectively to provide care due to restricted work routines [ ]. the experimential design of research prescribed fixed intervention time and dose, which did not always match clinical needs of residents in the care setting. in a staff experience study, paro was reported to have many bene- fits and staff found it useful and practical for people with dementia to use [ ]. not every older person wanted to interact with paro. one research reported that out of persons refused to interact with paro [ ]. other studies did not report refusal rate. improving social engagement paro has been found to improve social engagement in individuals with dementia, increased activity participa- tion, and promote more spontaneous communication [ , , , ]. paro helped to improve both verbal and visual engagement [ ] in social interactions. in a study, paro was utilized to facilitate conversations be- tween the individual with a therapist [ ]. in another study, paro was highlighted to work as an ice-breaker between staff and residents, a social mediator or an im- petus toward social interactions between residents [ , ]. a u.s. study reported paro’s positive effects on the activity levels of older people with dementia grew over weeks, suggesting paro offered more than “nov- elty effect” [ ]. a study in taiwan showed short-term interactions significantly improved the communication and interaction skills of participants in residential care [ ]. when paro was compared with a stuffed animal in japan, participants talked more frequently to paro and showed more positive emotional expressions with paro [ ]. rather than reducing human contact, the re- searchers found introducing paro may increase willing- ness of the staff members to communicate and work with elderly people with dementia, especially those with moderate dementia [ ]. a staff experience study in australia commented that paro provided a sense of belonging and warmness: “when i saw them interacting with it… you saw their loving personality came back” [ ]. also, staff perceived that paro gave older people with dementia (including males) confidence to talk with others around them: “the men don’t really tend to take with the babies a lot, whereas they did with the seal” [ ]. in a storytelling study, participants in the paro group not only spoke more words, but also were more articulate on the cre- ation of story characters, setting and story [ ]. it was suggested that improved communication contributed to fig. final themes hung et al. bmc geriatrics ( ) : page of table benefits of paro reported in included papers authors, setting & country reducing negative emotion and behavioral symptoms improving social engagement promoting positive mood and quality of care experience bemelmans et al., [ ] long-term care, netherlands + + + bemelmans et al., [ ] long-term care, netherlands + + + iacono & marti, [ ] long-term care, italy + jones et al., [ ] long-term care, australia + + jøranson et al., [ ] long-term care, norway + + + jøranson et al., [ ] long-term care, norway + + jøranson et al., [ ] long-term care, norway + + kidd, taggart, & turkle, [ ] long-term care, us + lane et al., [ ] long-term care, us + + marti et al., [ ] long-term care, italy + + + moyle et al., [ ] long-term care, australia + + moyle et al., [ ] long-term care, australia + moyle et al., , [ ] long-term care, australia + + moyle et al., [ ] long-term care, australia + + moyle et al., [ ] long-term care, australia + + petersen et al., [ ] long-term care, us + + robinson et al., [ ] long-term care, new zealand + + robinson et al., [ ] long-term care, new zealand + roger et al., [ ] long-term care, canada + + + Šabanovic et al., [ ] long-term care, us + + sung et la., [ ] long-term care, taiwan + + takayanagi et al., [ ] long-term care, japan + + thodberg et al., [ ] long-term care, denmark + valentí soler et al., [ ] long-term care, spain + + wada et al., [ ] long-term care, japan + + wada et al., [ ] day care, japan + + wada et al., [ ] long-term care, japan + + hung et al. bmc geriatrics ( ) : page of more calmed behaviors and improved mood [ , ], and reduced loneliness [ ]. some studies indicated im- proved social engagement persisted for longer than a year [ , ]. promoting positive mood and quality of care experience multiple studies have found improvements to positive emotions and behaviors in individuals with dementia interacting with paro. paro has been noted to help individuals become more active, smiling, relaxed and comfortable, more likely to laugh, and to have brighter facial expressions [ , , ]. it has also been found to improve participants’ mood and the quality of care re- ported by caregivers, as well as the level of comfort ob- served by families [ , ]. increased quality of life and pleasure scores with the use of paro have suggested improvement in care experience [ , ]. other studies have demonstrated positive effective in sleep [ , ] and pain medication use [ ]. in a quality of life research, the participants who spent time with paro (interven- tion group) showed to have a sustained improvement in quality of life, in comparison to a worsening trajectory in the control group [ , ]. the intervention group used significantly less psychotropic medication compared with the control group. family interviews in a study [ ] found families reported paro was something to love, offered meaningful stimulation, and companionship. family comments included: “everybody i saw with it, it certainly seemed to lighten their mood” and “i think for her it’ a companion, somebody to talk to, she’s not lonely”. overall, evidence showed paro may help to stimulate memories, promote positive mood and quality care experience [ ]. barriers while the social robot paro offers technological oppor- tunity in supporting dementia care and managing diffi- cult behavioral symptoms, the adoption of paro in care setting remains low. key barriers to the adoption of the technology include: cost and workload, infection con- cerns, and stigma and ethical issues. cost and workload one identified barrier to the uptake of social robot is cost and added workload to staff. since paro was often used individually or in small groups, the initial cost of purchasing a unit was brought up as a barrier to use in care settings [ , , , ]. the current cost of the robot is us$ . although there is government support in some countries such as u.s. and japan (as paro is certified as a therapeutic medical device), most health- care organizations in other countries have to purchase their own. the high cost can lead to a concern in innovation dissemination, fair distribution, and equity in the robotic use [ ]. currently, universal access by fair op- portunity to assistive technologies is an ideal but not a reality. a few studies also highlighted ongoing mainten- ance, cleaning and repair can be an added cost [ , ]. additionally, staff education and skill at facilitation and application have been identified as important aspects of using the robot so paro may be perceived as additional workload for caregivers and staff [ , , ]. a few stud- ies also brought up a concern that with patients in distress and frustration, paro may be damaged and may not be able to sustain in shared use with multiple residents within care facilities [ , ]. infection concerns another key consideration is infection prevention and control. studies highlighted that it can be difficult to keep paro’s fur clean [ , ], and that the fur covering is not designed to be regularly removed or machine washed, which may post a concern especially to individ- uals who are immunocompromised [ , ]. to keep to a minimize the spread of pathogens, the recommended protocol involves cleaning paro between contact with different users [ ], which may be seen as an added workload to staff in facilities. in a uk study at a general hospital over -month of time, paro was used with a hospital infection control protocol and found to be within the benchmark threshold for cleanliness [ ]. the authors commented, “however, during this study the time allowed for cleaning in the cleaning protocol was considered by the staff to be long and onerous. this had the potential to limit the use of paro by affecting per- ceived workload” (p. ). stigma and ethical issues the stigma of interacting with a robot animal was another concern identified by caregivers and staff. some authors raised the ethical question that the use of robots in de- mentia care creates risk of infantilizing and dehumanizing care [ ]. research noted that individuals might feel as if they are being treated like children, and the robot being seen as “toylike” [ , , ]. some cases described indi- viduals as appearing embarrassed about interacting with paro especially in front of others, and this might have in- fluenced their reactions [ , ]. it was noted that this might be of particular concern to men, who seem to re- spond less positively to paro in some studies [ , ]. as previously mentioned, however, male residents in another study responded positively with paro [ ]. this suggests the gender factor should be further investigated. in some cases, interventions with paro caused negative emotional responses, including anger, wandering, fearful- ness, and agitation [ , , ]. studies postulated that some individuals may have had past negative experiences with animals, therefore, consideration should include the hung et al. bmc geriatrics ( ) : page of person’s biography, particularly their like and dislike of animals [ ]. it was noted that when using paro, staff should uphold a person-centred approach, as just because the resident liked paro day does not mean that he or she will enjoy it the next [ ]. some staff and family raised concern that paro’s vocal sounds and movements could be distressing [ ]. trying to engage patients who were not interested could lead to increased agitation [ , ]. paro was found to not have the option to easily turn off because its hidden switch between the split tail fins; older people with dementia did not know how to turn the robot on or off [ ]. removing paro was sometimes noted to be difficult [ ]; after several weeks of removal of paro, one study found increased depressive symptoms at follow up [ ]. some studies described situations where paro ap- peared ineffective for some individuals or lost effect over time [ , ]. the differences in how specific subgroups may respond to the robot remain unclear and need further research. a few studies noted engagement was less likely with males, and those who were more cognitively im- paired tended to interact with paro and not with other humans [ , ]. for example, we do not know whether or not an individual’s previous positive experiences with ani- mals could affect level of engagement [ ]. the percep- tions of paro as a pet versus as a therapeutic tool might differ depending on cultural acceptance [ ]. regulating the robot as a medical device has disadvantages (e.g., keep- ing the price high and inequity of distribution) and advan- tages (e.g., safety regulations). table offers practical advice to draw on for stakeholders who are responsible for addressing barriers and ensuring safe, competent and ethical application. discussion in this scoping review, we identified key benefits of and barriers to the adoption of social robot paro in care set- tings. our findings suggest that while existing research studies demonstrated positive benefits of the social robot paro in supporting the psychosocial needs and care ex- periences in dementia care, there is a need to produce more robust knowledge to support effective uptake. there is a need to explore the complexity of technology use in a sustained manner. for example, process evaluation and qualitative studies are required to gain a better under- standing of what aspects of the psychosocial intervention work and do not work, for whom, and in what situa- tions [ ]. our analysis identified three major research gaps: (a) the first-person perspective of patients’ experi- ences and clinical needs remain unexplored, (b) few studies investigate the process of how to use the robot effectively in different situations to meet clinical needs, and (c) there is a need to apply relevant theory or con- ceptual frameworks to have a grounded understanding of the robot-human interaction and guide effective and appropriate application. users’ perspective the low uptake of social robot for dementia care could be a result of gap in unmet users’ needs and structural limitations in healthcare organizations. the users may include clinicians, patients, families, and policy-makers and healthcare leaders. our findings show previous re- search was more researcher-centered. there is a need to shift this research paradigm to be more patient–oriented and user-centered [ ]. the first person’s perspective about what matters and their priority needs have not been explored. innovative ways such as video methods [ , ] that accommodate memory problems and en- able active participation should be utilized to explore pa- tients’ perspectives. another important gap is the frontline clinicians’ perspective. clinicians, families, policy makers, and organizational leaders need to be engaged to identify strategies to enable successful translation of robotic tech- nology. future research should pay more attention to patients’ experiences and clinicians’ practice to ensure table key barriers and implications barriers implications cost and workload • high cost • staff workload consider shared use of the robot to serve a larger group of population in care settings involve healthcare professionals in co-developing strategies to fit workflow, improve effectiveness, and meet clinical needs infection concerns • sharing and spreading disease engage infection control practitioners, leadership, and frontline to develop practice guidelines and protocols provide training and ongoing support to ensure staff understand how to clean the robot and follow infection prevention procedures stigma and ethical issues • robot replacing human • reducing human contact • objectification • infantilizing • deception avoid the ‘human vs robot’ thinking, technology should complement but not replace the care provided by clinicians learn the person’s biography and apply a person-centered approach work with frontline and leaders in organizations to clarify the role of the robot and find out how the robot can be used most effectively investigate if the robot works with people with different stages and types of dementia, gender, ethnic and cultural backgrounds hung et al. bmc geriatrics ( ) : page of technology use adds values to the clinical care. for example, in a recent study of older adults’ perspective, the users considered appearance, functionalities and social capabilities to be important elements of social robots [ ]. as reported by lourida et al. ( ), a recent review on implementation of evidence-based dementia care inter- vention, they found organizational factors, such as time, workload, managerial support, knowledge, attitude, staff engagement are important factors for successful imple- mentation of evidence-based practice in dementia care. without user engagement and meaningful collaborations, working in silos is unlikely to fully realize the potential benefits of any robotic devices to meet the current and fu- ture challenges that people in healthcare face. the process of how findings of this review indicate a paucity of research fo- cusing specifically on the process of implementation of the robot in healthcare institutions. more research is needed to investigate the implementation process - how to engage knowledge users to achieve greatest impact. [ ] the technology adoption lifecycle is a helpful model that describes the process of adoption over time involves groups of innovators, early adopters, early majority, late majority, and laggards. [ ] paro can be moving in the transition between early adopters and majority. there- fore, it is important to fully understand barriers to adop- tion, patients’ experiences and pressing clinical issues to support adoption for practice change. the adoption of paro in denmark is a good example. [ ] over % of the local care institution in denmark are currently using paro. paro is recognized as a therapeutic tool for care professionals; the danish technological institute (a know- ledge mobilization organization) provides a training pro- gram on paro use. nursing staff in danish facilities use paro to promote residents’ sleep, improve mood, sup- port social communications, reduce anxiety, aggression and agitated behaviors. most studies used statistical significance to identify ef- fectiveness. we acknowledge that it is difficult to find a statistical significant analysis because it is too expensive to provide a large number of paro robots. using statis- tical significance and outcome-based approach to assess impact are inadequate as they do not take into account the multiple interactive factors that may influence the human-robot interaction. for example, shared values and purpose of the local team and organization may affect the attitude and behaviors of clinicians in using the robot for care. what is clinically significant (what matters to pa- tients, families, and clinicians) may not be captured by statistical significance. we also found that training and education were not adequately used in clinicians and stakeholders to facilitate uptake. organizational and struc- tural factors that may influence technology adoption but were not investigated and reported. future work should report implementation process and identify facilitators or strategies that were effective to overcome barriers to successful adoption. healthcare funding models and constraints on health- care funding can play a substantial role in social robot adoption. for example, paro in the us is a medical de- vice and billable to medicare. paro can be prescribed as an alternative therapy in the us. physicians, psycholo- gists, and nurse practitioners have their reimbursement rates. [ ] however, this is not the case in canada even though canadians have universal access to most health- care services. fair opportunities to access technology use should be an important goal for governments. for social justice and equity reasons, there is a need to develop funding structure to make technologies affordable to those who need them. it is necessary to understand what (e.g., resources and skill training) is needed to address issues to clear the way for staff to work effectively with robotic technology in clinical practice. apply theory and embrace complexity almost all of the available literature did not apply theor- ies to guide the intervention research. future research will benefit from using theories/models to understand how the social robot may meet the psychosocial needs of people with dementia. also, knowledge translation the- ories can be utilized to contextualize drivers, barriers as well as conditions conducive for effective application. in- novative methods should be used to shed light on the complex dynamics of implementation content in demen- tia care [ ]. organizational leaders, managers, educa- tors, physicians, nurses, therapists, care staff, families, and patients may each have interests related to their role in the care settings. it is pivotal to consider context as a complex adaptive system; the interplay between inter- ventions, implementation strategies and context are interacting components of a complex system [ ]. strengths and limitations this review offers a meaningful contribution as our find- ings have implications for stakeholders with responsibil- ity for applying technology in supporting dementia care. we followed the established guideline by the joanna briggs institute to ensure the entire review process is rigorous and transparent. our team analysis included patient and family partners, as well as an interdisciplin- ary team to ensure quality. the screening and article selection was conducted independently by team mem- bers in multiple disciplines, including physicians, an oc- cupational therapist, and a nurse researcher. the diverse perspectives in our project team enrich the analysis and add credibility to the review. hung et al. bmc geriatrics ( ) : page of this review has several limitations. literature pub- lished in other language was not searched. there is rele- vant literature on the social robot published in other languages but were not included in the review. our search strategy may have been biased toward health and sciences. searching other technological databases may have yield additional articles. we did not contact experts for checking additional articles we may have missed. conclusions this scoping review has mapped the reported benefits of using the social robot paro in supporting older people with dementia within care settings and revealed a pau- city of evidence to inform how the social robot could be most effectively adopted to meet clinical needs. in previ- ous studies, interventions evaluated have been primarily researcher-focused. future research should consider dee- per user involvement, including patients and families, frontline clinicians, policy makers and organizational leaders to co-design translation strategies for integrating technology into care. lastly, there is a need to apply the- ory to understand how the social robot may meet the psychosocial needs of people with dementia. additional file additional file : summary of included studies (docx kb) abbreviations pars: physically-assistive robots; sars: socially-assistive robots acknowledgements the authors would like to thank nina smart, librarian for gerontology public policy and urban studies at simon fraser university. authors’ contributions lh conceived the idea for the review and hc provided advice and guidance. lh contributed to the design of the review and devised the search strategy, lh, cl, ew, & aay performed the literature searches and screened titles, abstracts and full texts and applied inclusion and exclusion criteria to select articles. lh, cl, and ew independently conducted coding. all authors interpreted and analyzed the data. lh, cl, and ew drafted the manuscript. all authors critically reviewed and revised the manuscript. all authors read and approved the final manuscript. funding this review was funded by woodward foundation. availability of data and materials the raw data set is made available as an additional supporting file of this manuscript. please see additional file : summary of included studies. ethics approval and consent to participate not applicable. consent for publication not applicable. competing interests the authors declare that they have no competing interests. author details gerontology research centre, simon fraser university, room , - west hastings street, vancouver, bc v b k , canada. university of british columbia, vancouver, canada. vancouver coastal health, vancouver, canada. community engagement advocacy network at vancouver coastal health, vancouver, canada. received: october accepted: august references . sampson el, white n, leurent b, scott s, lord k, round j, et al. behavioural and psychiatric symptoms in people with dementia admitted to the acute hospital: prospective cohort study. br j psychiatry. ; 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: - . . takayanagi k, kirita t, shibata t. comparison of verbal and emotional responses of elderly people with mild/moderate dementia and those with severe dementia in responses to seal robot, paro. front aging neurosci. ; : . . shibata t, coughlin jf. trends of robot therapy with neurological therapeutic seal robot, paro. j robot mechatronics. ; : – . . jøranson n, pedersen i, rokstad amm, aamodt g, olsen c, ihlebæk c, et al. group activity with paro in nursing homes: systematic investigation of behaviors in participants. int psychogeriatrics c int psychogeriatr assoc. ; : – . https://doi.org/ . /s . . joranson n, pedersen i, rokstad amm, ihlebaek c, jøranson n, pedersen i, et al. change in quality of life in older people with dementia participating in paro-activity: a cluster-randomized controlled trial. j adv nurs. ; : – . . wada k, shibata t, saito t, tanie k. effects of robot-assisted activity for elderly people and nurses at a day service center. proc ieee. ; : – . . jones c, moyle w, murfield j, draper b, shum d, beattie e, et al. does cognitive impairment and agitation in dementia influence intervention effectiveness? findings from a cluster-rct with the therapeutic robot, paro. j am med dir assoc. ; : – . . liang a, piroth i, robinson h, macdonald b, fisher m, nater um, et al. a pilot randomized trial of a companion robot for people with dementia living in the community. j am med dir assoc. : – . https://doi.org/ . /j.jamda. . . . . bemelmans r, gelderblom gj, jonker p, de witte l. how to use robot interventions in intramural psychogeriatric care; a feasibility study. appl nurs res. ; : – . https://doi.org/ . /j.apnr. . . . . 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: . https://doi.org/ . /geront/gnv . . . pino m, boulay m, jouen f, rigaud as. “are we ready for robots that care for us?” attitudes and opinions of older adults toward socially assistive robots. front aging neurosci. ; : – . . lourida i, abbott ra, rogers m, lang ia, stein k, kent b, et al. dissemination and implementation research in dementia care: a systematic scoping review and evidence map. bmc geriatr. ; : – . . taherdoost h. a review of technology acceptance and adoption models and theories. procedia manuf. ; : – . https://doi.org/ . /j. promfg. . . . . petersen s. paro: an important solution for symptom control; . p. – . . reed ms, stringer lc, fazey i, evely ac, kruijsen jhj. five principles for the practice of knowledge exchange in environmental management. j environ manag. ; : – . https://doi.org/ . /j.jenvman. . . . publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. hung et al. bmc geriatrics ( ) : page of https://doi.org/ . /s https://doi.org/ . /j.jamda. . . https://doi.org/ . /j.jamda. . . https://doi.org/ . /j.apnr. . . https://doi.org/ . /appy. https://doi.org/ . /is. . . wad https://doi.org/ . /wcica. . https://doi.org/ . /wcica. . https://doi.org/ . /j.jamda. . . https://doi.org/ . / . . https://doi.org/ . / . . https://doi.org/ . /j.jamda. . . https://doi.org/ . /opn. https://doi.org/ . /opn. https://doi.org/ . /geront/gnv . https://doi.org/ . /j.promfg. . . https://doi.org/ . /j.promfg. . . https://doi.org/ . /j.jenvman. . . 	abstract 	background 	methods 	results 	conclusions 	background 	methods 	results 	benefits 	reducing negative emotion and behavioral symptoms 	improving social engagement 	promoting positive mood and quality of care experience 	barriers 	cost and workload 	infection concerns 	stigma and ethical issues 	discussion 	users’ perspective 	the process of how 	apply theory and embrace complexity 	strengths and limitations 	conclusions 	additional file 	abbreviations 	acknowledgements 	authors’ contributions 	funding 	availability of data and materials 	ethics approval and consent to participate 	consent for publication 	competing interests 	author details 	references 	publisher’s note in vivo molecular imaging of chemokine receptor cxcr expression in patients with advanced multiple myeloma research article in vivo molecular imaging of chemokine receptor cxcr expression in patients with advanced multiple myeloma kathrin philipp-abbrederis ,†, ken herrmann ,**,†, stefan knop , margret schottelius , matthias eiber , katharina lückerath , elke pietschmann , stefan habringer , , carlos gerngroß , katharina franke , martina rudelius , andreas schirbel , constantin lapa , kristina schwamborn , sabine steidle , elena hartmann , andreas rosenwald , saskia kropf , ambros j beer ,‡, christian peschel , , hermann einsele , andreas k buck , markus schwaiger , , katharina götze , , hans-jürgen wester , , & ulrich keller , ,* abstract cxcr is a g-protein-coupled receptor that mediates recruitment of blood cells toward its ligand sdf- . in cancer, high cxcr expression is frequently associated with tumor dissemination and poor prognosis. we evaluated the novel cxcr probe [ ga]pentixafor for in vivo mapping of cxcr expression density in mice xenografted with human cxcr -positive mm cell lines and patients with advanced mm by means of positron emission tomo- graphy (pet). [ ga]pentixafor pet provided images with excellent specificity and contrast. in of patients with advanced mm [ ga]pentixafor pet/ct scans revealed mm manifestations, whereas only nine of standard [ f]fluorodeoxyglucose pet/ct scans were rated visually positive. assessment of blood counts and standard cd + flow cytometry did not reveal significant blood count changes associated with tracer application. based on these highly encouraging data on clinical pet imaging of cxcr expres- sion in a cohort of mm patients, we conclude that [ ga]pentixafor pet opens a broad field for clinical investigations on cxcr expression and for cxcr -directed therapeutic approaches in mm and other diseases. keywords chemokine receptor; cxcr ; in vivo imaging; multiple myeloma; positron emission tomography subject categories biomarkers & diagnostic imaging; cancer doi . /emmm. | received october | revised january | accepted january | published online march embo mol med ( ) : – introduction chemokine receptor- (cxcr ) is a member of the g-protein- coupled chemokine receptor family. the sole known natural ligand of cxcr is cxcl /sdf- . sdf- binding to cxcr activates downstream signaling pathways such as map kinase and the pi kinase pathway, ultimately resulting in altered cell adhesion, migra- tion, and homing (zlotnik et al, ; jacobson & weiss, ). cxcr is normally expressed on t and b lymphocytes, monocytes, macrophages, neutrophils, and eosinophils, and by hematopoietic stem/progenitor cells (hspcs) residing within the bone marrow (bm) niche. antagonizing the cxcr -mediated retention of hpcs in this niche by means of anti-cxcr -directed treatment with the cxcr antagonist plerixafor allows mobilization of hpcs for auto- grafting upon myeloablative therapies (brave et al, ). plerixafor treatment also mobilizes various lymphocyte populations into the peripheral blood, emphasizing the important role of the sdf- / cxcr axis for lymphocyte trafficking (kean et al, ). iii. medical department of hematology and medical oncology, technische universität münchen, munich, germany department of nuclear medicine, universitätsklinikum würzburg, würzburg, germany department of internal medicine ii, division of hematology and medical oncology, universitätsklinikum würzburg, würzburg, germany pharmaceutical radiochemistry, technische universität münchen, munich, germany department of nuclear medicine, technische universität münchen, munich, germany german cancer consortium (dktk) and german cancer research center (dkfz), heidelberg, germany institute of pathology, universitätsklinikum würzburg and ccc mainfranken, würzburg, germany institute of pathology, technischen universität münchen, munich, germany scintomics gmbh, fürstenfeldbruck, germany *corresponding author. tel.: + ; fax: + ; e-mail: ulrich.keller@lrz.tum.de **corresponding author. tel.: + ; fax: + ; e-mail: herrmann_k @ukw.de †these authors contributed equally to this work ‡present address: department of nuclear medicine, universität ulm, ulm, germany ª the authors. published under the terms of the cc by . license embo molecular medicine vol | no | published online: march , pathological cxcr overexpression has been reported in various types of solid cancers and in hematopoietic malignancies such as leukemia and lymphoproliferative malignancies (burger & peled, ; cojoc et al, ). in cancer, cxcr overexpression and recep- tor activation by sdf- binding are key triggers for tumor growth and progression, invasiveness, and metastasis (muller et al, ). accordingly, cxcr overexpression has been identified as an adverse prognostic factor in various malignancies (spano et al, ; spoo et al, ). in particular, cxcr -mediated interaction that holds cancer (re-)initiating cells within a protective tumor microenviron- ment (tme) seems to be responsible for resistance to pharmacological treatment, and for relapse, at least in hematopoietic cancers (teicher & fricker, ; mendelson & frenette, ; shain & tao, ). multiple myeloma (mm, plasma cell myeloma) is the second most prevalent b-cell cancer. despite the availability of potent novel drugs, it remains, for the large part of patients, an incurable disease (palumbo & anderson, ; ocio et al, ). mm is characterized by the expansion of malignant plasma cells predominantly within the bm. one key clinical characteristic is the uncoupling of bone formation and bone destruction, resulting in osteolytic bone lesions (raab et al, ; roodman, ). studies on both cultured and patients’ primary mm cells showed a strong correlation between cxcr /sdf- activa- tion and mm-related bone disease (zannettino et al, ; bao et al, ). sdf- engages cxcr on mm cells favoring their recruitment to the bm by affecting migration, adhesion, and extravasation (parmo- cabanas et al, ; aggarwal et al, ; alsayed et al, ). besides the different cell types constituting the bm niche, primary mm cells themselves secrete sdf- , which results in autocrine stimulation of plasma cell proliferation. therefore, the cxcr /sdf- axis repre- sents a highly relevant molecular target in mm and other cancers due to its important role in pathogenesis and its potential involvement as a mediator of resistance to treatment (burger & kipps, ). despite the fundamental role of cxcr in cancer and in particular mm biology and its significance as a target for therapeutic approaches, a highly sensitive method for cxcr assessment and quantification in vivo has been lacking so far. such in vivo assessment of cxcr expression could provide an additional and clinically important method to select patients for cxcr -directed treatment, for example, by anti- cxcr antibodies that are in early-phase clinical trials (kashyap et al, ) (e.g., clinicaltrials.gov identifier nct ), or for use within a theranostic peptide receptor radiotherapy (prrt) concept. to meet this clinical need, [ ga]pentixafor ([ ga]cpcr . ), a high- affinity cxcr -targeted nuclear probe for pet imaging, has recently been developed (demmer et al, ; gourni et al, ) and evalu- ated in a first proof-of-concept investigation (wester et al, ). the present study aimed at the evaluation of [ ga]pentixafor pet/ct as a novel and powerful tool for sensitive, non-invasive in vivo quantifica- tion of cxcr in preclinical models of mm and in a clinical pilot assessment investigating patients with advanced mm. results frequency of mm patients with high tumor cxcr (cd ) expression the cxcr -sdf- axis constitutes a central mechanism for recruit- ing and retaining mm cells within the tme (zannettino et al, ; bao et al, ). to investigate the frequency of mm patients with high cxcr expression, we performed flow cytometry on an unse- lected cohort of patients undergoing bm biopsy for previously established mm, or because of newly diagnosed monoclonal gammo- pathy. by assessing cxcr expression as compared to an isotype control antibody (gating strategy depicted in supplementary fig s ), we identified of patients ( %) with cxcr -positive mm. representative histograms depicting cxcr + vs. cxcr � mm are shown in fig a. in order to estimate the magnitude of cxcr expression in mm cells compared to normal non-malignant cell populations that have previously been described as cxcr positive (aiuti et al, ; honczarenko et al, ; burger & kipps, ; brave et al, ), we compared cxcr expression levels in individual mm patient samples judged cxcr positive by flow cytometric and immunohistochemical assessment (cxcr + mm). in cxcr + mm, relative plasma cell surface cxcr expression levels were significantly higher than those on intraindividual cd + b cells, cd + t cells, cd + hspcs, and cd + mono- cytes (fig b–d; gating strategy depicted in supplementary fig s ; representative data shown in supplementary fig s a–d), indicating that a cxcr -directed pet tracer could be suitable for mm imaging. thus, in our unselected cohort, over % of mm patients expressed cxcr on their plasma cells. relative cancer cell cxcr expression in these patients was high compared to intraindividual control bm cell populations. [ ga]pentixafor is a pet tracer suitable for detecting cxcr + mm in vivo considering the high cxcr expression levels in a substantial proportion of mm patients as compared to intraindividual control cell populations, we searched for mm cell lines that could be suited for preclinical in vivo imaging studies. considerable levels of cxcr transcript (fig a) and protein (fig b) were detected in the well-established mm lines mm. s and opm- as opposed to the ovarian cancer cell line hela, which is characterized by low cxcr expression. moreover, mm. s and opm- cells were found to bind the cxcr -directed pet probe [ ga]pentixafor (fig c). thus, these cell lines represent models for in vivo binding and uptake studies. in order to determine the suitability of the high-affinity human cxcr -specific probe pentixafor as an in vivo mm pet tracer, nod scid mice were xenografted with mm. s and opm- cells and underwent consecutive [ f]fdg and [ ga]pentixafor pet. imaging with [ ga]pentixafor resulted in markedly higher mean tumor-to-background ratios (tbr) for both the mm. s and opm- xenografted tumors, compared to the widely used tracer [ f]fdg (fig d and e). flow cytometric quantification of cell surface cxcr expression on resected tumors suggested a correlation between cxcr cell surface levels and the [ ga]pentixafor uptake in the respective xenografts observed in the small animal pet studies (fig f and g). as expected when using a human cxcr - specific probe such as pentixafor (gourni et al, ), virtually no tracer uptake was observed in cxcr -expressing mouse organs such as spleen, lung, adrenals, or the bm (fig e). to further substantiate the specificity of [ ga]pentixafor binding to human embo molecular medicine vol | no | ª the authors embo molecular medicine in vivo cxcr imaging of human myeloma kathrin philipp-abbrederis et al published online: march , cxcr , we next performed competition studies where mice bear- ing mm xenograft tumors received the fda-approved drug amd (plerixafor) (brave et al, ) before receiving the [ ga]-labeled pet probe. amd pretreatment resulted in a near complete loss of [ ga]pentixafor binding in vitro and in vivo (fig h, supplementary fig s ). thus, [ ga]pentixafor is a pet tracer that binds human cxcr expressed on mm cell lines and xenograft tumors with high specificity and is suitable as an in vivo cxcr pet imaging probe. [ ga]pentixafor provides additional diagnostic information to [ f]fdg in mm patients to evaluate the suitability of [ ga]pentixafor for in vivo imaging of mm in patients and for its usefulness to select patients for future cxcr -directed treatments, we visually analyzed patients with histologically proven, advanced mm. the patient characteristics are shown in table . all patients gave written informed consent for receiving the [ ga]pentixafor pet as well as undergoing a standard [ f]fdg pet. representative images of one [ ga]pentixafor pet-positive patient are shown in fig a–d. representative images of one [ ga]pentixafor pet-negative patient are shown in supplementary fig s . in summary, of ( %) [ f]fdg scans were rated visually positive, whereas of ( %) [ ga]pentixafor scans revealed disease manifestations (fig a). visual comparison of [ f]fdg and [ ga]pentixafor scans resulted in comparable findings in ( %) patients. in patients ( %), the [ ga]pentixafor signal was superior to [ f]fdg identifying more tumor lesions, whereas in patients ( %), [ f]fdg provided additional information compared to [ ga]pentixafor. in the remaining patients ( %), [ ga]pentixafor and [ f]fdg provided complementary information regarding the detection of myeloma manifestations (fig b). more than three a b c d cxcr (cd )-positive cxcr (cd )-negative c d - p e cd -fitc co un ts pe c d - p e cd -fitc co un ts pe pl as m ac ell s b ce lls t ce lls cd + mo no cy te s - c d in te ns ity plasmacells b cells t cells monocytes cd + cellsco un ts pe h&e cd kappa lambda cxcr * µm µm µm µm µm * * * figure . cxcr expression in mm patient bone marrow. a flow cytometric evaluation of cxcr surface expression using an anti-cxcr -pe antibody. left: positive patient; right: negative patient; representative data are shown. the gating strategy is depicted in supplementary fig s . b representative histograms revealing the magnitude of cxcr expression in myeloma cells as compared to the indicated bone marrow cell subtype. c median fluorescence intensity of surface cxcr expression relative to isotype control (n = – patients). horizontal bars indicate mean of all individual patient values; asterisks indicate statistical significance (plasma cells vs b cells: p = . ; plasma cells vs t cells: p = . ; plasma cells vs cd + cells: p = . ; plasma cells vs monocytes: p = . ; student’s t-test to compare mean plasma cell relative expression with mean relative expression of each further indicated cell subtype). mm patients judged positive for cxcr expression were selected for this analysis. d representative mm bone marrow staining of a patient positive for mm cxcr expression: hematoxylin and eosin (h&e) staining. immunohistochemistry for cd , cxcr , light chain kappa, and light chain lambda. ª the authors embo molecular medicine vol | no | kathrin philipp-abbrederis et al in vivo cxcr imaging of human myeloma embo molecular medicine published online: march , lesions were reported in of fdg scans and of [ ga]pentixafor pet scans. extramedullary disease (emd) was detected in [ ga]pentixafor scans and in [ f]fdg pet scans. in one patient, [ ga]pentixafor but not [ f]fdg identified emd. in comparison with the pet scans, only of ct scans did not show mm manifestations resulting in of ( %) positive scans. more than three lesions were described in of patients, whereas emd was only reported in patient. an exemplary patient where [ ga]pentixafor imaging provided supe- rior information is shown in supplementary fig s . in summary, combined pentixafor/fdg pet imaging provides additional information on disease extent in mm patients. a actin cxcr he la mm .s op m- . . . . re l. ex pr es si on (u b) b e c d up ta ke [c pm / c el ls ] opm- mm. s incubation time (minutes) mm .s op m- mm .s op m- he la mm . s op m- mm .s opm- t b r pentixaforfdg f g left: opm- right: mm -s left: opm- right: mm -s left: opm- right: mm -s mm .s op m- opm- mm .s c x c r [g e o m ea n] pentixafor mean tbr c x c r [g eo m ea n] + amd - amd opm- opm- mm. smm. s h r = . * * * * * * figure . [ ga]pentixafor pet imaging of mm xenografts. a real-time pcr analysis of cxcr transcript expression levels in hela (negative control) and in mm cell lines mm. s and opm- . shown is the mean relative expression � sem (n = independent experiments). values are normalized to the expression of ubiquitin (ub). the asterisk indicates statistically significant differences (hela vs mm. s: p < . ; hela vs opm- : p < . ; student’s t-test). b cxcr protein expression assessed by immunoblotting (one representative blot out of is shown). c binding of [ ga]pentixafor to mm. s and opm- cells after the indicated incubation periods (n = per cell line and time point). shown is the mean � sem. the difference between the opm- groups is statistically significant; *p < . (one-way anova). d mean tumor-to-background ratio (tbr) for [ f]fdg (left) and for [ ga]pentixafor (right) in mm. s and opm- xenograft-bearing nod scid mice. shown is the mean � sem, n = tumors ( mice); *p = . for [ f]fdg and *p = . for [ ga]pentixafor (student’s t-test). one-way anova revealed significant differences between the groups; p < . (not graphically shown). e representative [ ga]pentixafor pet images of three mice bearing mm. s (right shoulder) and opm- (left shoulder) tumors. f flow cytometric quantification of cxcr cell surface expression on resected mm. s and opm- tumors. data are the mean � sem, n = . *p = . ; mann–whitney u-test. g correlation of [ ga]pentixafor pet mean tbr and cxcr cell surface expression assessed by flow cytometry. n = tumors were analyzed. h mice (n = ) bearing opm- and mm. s xenografts were coinjected with amd (right image, one representative mouse) or not pretreated (left image) before undergoing [ ga]pentixafor pet. the white arrows point to the bladder. quantification is shown in supplementary fig s a. source data are available online for this figure. embo molecular medicine vol | no | ª the authors embo molecular medicine in vivo cxcr imaging of human myeloma kathrin philipp-abbrederis et al published online: march , lesion-based visual and semi-quantitative comparison of [ f] fdg and [ ga]pentixafor uptake up to three lesions per patient were semi-quantitatively evaluated accounting for a total of lesions ( lesions in ten patients and lesions in one patient). for [ f]fdg, a total of lesions were rated visually positive as opposed to for [ ga]pentixafor. while lesions were read as [ f]fdg and [ ga]pentixafor positive, lesions only showed increased [ f]fdg uptake. in contrast, lesions were [ ga]pentixafor positive and [ f]fdg negative. the corresponding mean suvmax value for [ f]fdg was . (range . – . ) and thus significantly lower than the mean suvmax for [ ga] pentixafor ( . , range . – . ; p = . ; wilcoxon signed-rank test). suvmax data are summarized in supplementary fig s . correlation with standard imaging techniques ct and magnetic resonance imaging (mri) low-dose ct information was available in all patients revealing bone involvement in all but one patient ( %). a diagnostic ct with contrast media was only available in patients, and a diagnostic ct without contrast media in additional patients. with this limitation in mind, emd was only seen in patient. mri was performed as part of pet/mri in two patients showing extended bone disease in both patients with no emd. the sensitivity of the [ ga]pentixafor probe for detecting bm infiltration that is not clearly evident as lytic bone lesions is exemplified in a cxcr -pet-positive patient, where the [ ga]pentixafor pet showed visual positivity corresponding well to intramedullary mm infiltration revealed by mri (fig a–c). [ ga]pentixafor pet is not associated with hspc mobilization or blood count variations application of [ ga]pentixafor was well tolerated. peripheral blood was obtained from of patients of the imaging cohort h before (� ), h (+ ), h (+ ), and days (day ) after [ ga]pentixafor pet imaging. white blood counts, hemoglobin, and platelet counts were assessed at the indicated time points and did not reveal signifi- cant intrapatient changes associated with tracer application. we also did not observe significant changes in peripheral blood cd + table . patient characteristics at initial diagnosis (imaging cohort). no of patients % median (range) age ( – ) sex male female monoclonal protein igg iga light chain kappa light chain lambda stage of disease at first diagnosis ia iia iiia iiib no of previous regimens ( – ) high-dose chemotherapy radiotherapy a b [ f]fdg pet/ct: mip pet [ ga]pentixafor pet/ct: mip pet [ ga]pentixafor pet/ct: fusion ax [ f]fdg pet/ct: fusion ax c d figure . [ ga]pentixafor pet/ct and [ f]fdg pet/ct. a–d maximum intensity projections (mip) of [ ga]pentixafor (a) and [ f]fdg pet/ct (b) of a -year-old male with histologically proven multiple myeloma indicating the better lesion-to-background contrast for [ ga]pentixafor in the corresponding myeloma manifestations. trans-axial views of the upper thorax (c) and the pelvis (d) underline the higher uptake values of the bone manifestations (yellow arrows) of [ ga]pentixafor compared to [ f]fdg. ª the authors embo molecular medicine vol | no | kathrin philipp-abbrederis et al in vivo cxcr imaging of human myeloma embo molecular medicine published online: march , proportion nor absolute number (supplementary fig s ). no further toxicities were observed during or after [ ga]pentixafor applica- tion. discussion our data represent the first study on quantitative pet imaging of cxcr , a key chemokine receptor involved in leukocyte attraction, hematopoietic stem cell homing, tumorigenesis, and many other processes, in preclinical models of myeloma and in a cohort of patients with advanced mm. high cxcr expression has been reported in numerous solid cancers and in various hematopoietic malignancies, including mm (teicher & fricker, ; weilbaecher et al, ). importantly, the level of cxcr expression assessed by either transcript or whole-cell protein-level analysis is not necessarily representative of cxcr expression level on the cell surface (teicher & fricker, ). cxcr overexpression on the cell membrane is, however, the key parameter for successful cxcr -directed tumor targeting in vivo, both for diagnostic imaging and in particular for endoradiotherapeu- tic approaches. our in-depth analysis of intraindividual surface cxcr levels in bm subpopulations revealed that in at least half of the patients, cxcr expression on the surface of mm cells is signifi- cantly elevated as compared to b and t cells, monocytes, and cd + hspcs. negligible levels of cxcr -specific binding were also observed in normal bm and the main lymphatic organs spleen, thymus, and lymph nodes. thus, given the high contrast obtained in [ ga]pentixafor pet between low endogenous cxcr expres- sion and pathological cxcr overexpression of positive mm lesions, this imaging methodology may allow for selecting patients for cxcr -directed treatment, such as radionuclide or toxin-labeled pentixafor analogs. in accordance with the frequent and strong pres- ence of cxcr on plasma cells from mm patients, cxcr expres- sion on transcriptional and protein level in established human mm cell lines was robust and [ ga]pentixafor was found to bind to these cells in vitro. additionally, lpet imaging with pentixafor detected xenografted mm tumors with high specificity and contrast, and tracer accumulation was found to correlate with cxcr cell surface expression in tumor tissue. thus, detection and investiga- tion of mm lesions in vivo seems to be feasible with [ ga]pentixafor. however, the high tumor/background ratios observed in the mouse xenograft model are at least partly the result of the selectivity of [ ga]pentixafor for human cxcr (demmer et al, ). since [ ga]pentixafor does not bind to murine cxcr , [ ga]pentixafor pet studies investigating cxcr -associated pathologies in a mouse model are currently limited to xenograft animal models. high levels of cxcr have been shown to indicate particularly aggressive disease, metastasis, or poor prognosis in solid cancers (teicher & fricker, ; weilbaecher et al, ) and aml (spoo et al, ). such correlations are, however, not expected in mm, a malignancy that is at primary diagnosis nearly exclusively bm based (raab et al, ; roodman, ; palumbo & anderson, ; ocio et al, ). although cxcr /sdf- activation and mm-related bone disease are clearly associated (zannettino et al, ; bao et al, ), it is evident that sdf- engages cxcr on mm cells favoring their recruitment to the bm by affecting migration, adhe- sion, and extravasation (parmo-cabanas et al, ; aggarwal et al, ; alsayed et al, ). thus, losing the requirement for mm–tme interactions in situations like plasma cell leukemia or in extramedullary relapse could point to a scenario where [ ga]pentixafor pet might be inferior to standard [ f]fdg pet, which has proven diagnostic value in extramedullary mm (bao et al, ; stessman et al, ). although we investigated such patients with emd after allogeneic sct with both pet tracers, it is to date not clear whether this is the case. our data, however, suggest a possible complementary benefit when both pet tracers fdg pentixafor total= fdg pentixafor complementary comparable a b po si tiv e pa tie nt s (n ) figure . visual comparison of [ f]fdg- and [ ga]pentixafor pet scans. a number of patients with visual positivity for the indicated pet tracer (total: n = ). b number of patients (total n = ) for whom imaging with [ f]fdg pet (fdg, n = ) or [ ga]pentixafor pet (pentixafor, n = ) was superior, with comparable positivity (comparable, n = ), and with dual imaging providing complementary visual information (complementary, n = ). ct [ ga]pentixafor pet/mr mr-t stir a cb figure . [ ga]pentixafor pet/mr images. a–c coronal views of [ ga]pentixafor (a), t stir weighted mri (b) and ct bone window (c) of a male patient with histologically proven multiple myeloma. the increased [ ga]pentixafor uptake correlates with the hyperintense t stir signal; however, the myeloma manifestations are underestimated in the corresponding bone window ct. embo molecular medicine vol | no | ª the authors embo molecular medicine in vivo cxcr imaging of human myeloma kathrin philipp-abbrederis et al published online: march , are available. for example, [ ga]pentixafor did not penetrate the intact blood–brain barrier, in sharp contrast to fdg. the cxcr antagonist plerixafor is an fda- and ema- approved drug used for mobilization of hspcs for stem cell graft retrieval (brave et al, ). the dosage used for this purpose is . mg/kg body weight per day, in combination with granulocyte colony-stimulating factor (g-csf), and usually applied after several days of g-csf treatment alone. as expected on the basis of the applied amount of pentixafor (< lg/patient), we did not observe any side effects of [ ga]pentixafor application acutely or during the course of several days, in particular any blood count or hspc abnormalities other than caused by the underlying mm. also, toxicity of the radionuclide ga in the administered dose is negligible. previous efforts to use plerixafor-derived probes for imaging purposes failed due to an accumulation of the drug in spleen tissue, or by unspecific binding within liver tissue or liver-based metabolism (nimmagadda et al, , ; de silva et al, ; kuil et al, ; weiss & jacobson, ). in none of our patients did we find evidence of increased binding of [ ga]pentixafor in the liver that was not associated with mm as documented with the established pet tracer [ f]fdg. in the vast majority of cases, mm presents as a systemic disease with a measurable monoclonal gammopathy that allows following response to treatment and observing the patient for relapse non- invasively (rajkumar et al, ). analysis of serum and urine by means of immunofixation allows for the detection of subclinical disease, and low-dose whole-body computed tomography is a powerful tool for the detection of osteolytic lesions which may prompt initiation of radiotherapy planning (ippolito et al, ). magnetic resonance imaging (mri) provides more detailed infor- mation about bm infiltration and emd in mm (baur-melnyk et al, ), and [ f]fdg pet imaging clearly provides additional infor- mation with regard to prognosis and extent of local disease, in partic- ular emd (durie et al, ; zamagni et al, ; agarwal et al, ). both mri and [ f]fdg pet are, however, not considered a routine procedure required for every patient (rajkumar et al, ). the purpose of this study was thus not to establish a novel diagnostic pet tracer for mm in particular, but to test the applicability of this molecular probe in a disease with frequent cxcr surface expression. more importantly, however, we consider mm a disease where it would be highly interesting to combine [ ga]pentixafor pet as a selection marker for cxcr -directed treatment and to ensure target expression. upon availability, [ lu]- or [ y]-coupled pentixafor analogs could become attractive radiopharmaceuticals for a theranostic approach with ga-labeled pentixafor as a marker for patient selection and therapy monitoring, and the latter compounds as endoradiotherapeutics. such an approach has previously been demonstrated in neuroendocrine tumors with resounding success (breeman et al, ; das et al, ; werner et al, ). the most obvious and attractive scenario would thus follow the sequence [ ga]pentixafor pet, therapy with a radionuclide or toxin, a stan- dard myeloablative therapy, followed by sct. sct thus would allow applying labeled pentixafor doses that will most likely result in perturbations of bm function. such an approach is currently under investigation. also, disintegrating and targeting the hsc interaction with its bm niche could be an interesting principle in treating hspc disorders (burger et al, ; shain & tao, ). in addition to such direct usage of pentixafor as a carrier for active agents, the use as an imaging modality for patient selection would be an obvious approach, for example, for anti-notch-directed treatments that are currently being evaluated and involve cxcr -sdf- activation (mirandola et al, ), or for selection of patients receiving anti-cxcr therapies such as bms- /mdx- , a fully human anti-cxcr antibody currently in clinical investigation (kuhne et al, ). our data demonstrate the suitability of [ ga]pentixafor for pet imaging of cxcr chemokine receptor expression in mm patients. we conclude that this novel pet tracer could serve as an innovative imaging agent, for in vivo biomarker identification that could result in patient selection for cxcr -directed treatments, and eventually for receptor-radio(drug)peptide therapy. materials and methods patients detailed characteristics for the pet imaging patient cohort are given in table . all patients had histologically proven mm and active ongoing disease as assessed by biopsy or immune electrophoresis. as previously reported for other [ ga]-labeled peptides (haug et al, ), [ ga]pentixafor was administered under the conditions of pharmaceutical law (the german medicinal products act, amg § b) according to the german law and in accordance with the respon- sible regulatory agencies (regierung von oberbayern, regierung von unterfranken). all patients gave written informed consent prior to the investigations. the responsible ethics committees of the tech- nische universität münchen and the universitätsklinikum würzburg approved data analysis. the current study is not a confirmatory one. there were no prespecified hypotheses that would have allowed for sample size calcu- lation. it is an observational pilot study used to conduct explorative analyses. therefore, the sample size was chosen to serve this purpose. it enabled the computation of descriptive and explorative statistics. cell lines and cell culture the human multiple myeloma cell lines opm- (dsmz no. acc ) and mm. s (atcc crl- ) were cultured in rpmi supple- mented with % fcs, mm l-glutamine, mm sodium pyruvate, u/ml penicillin, and lg/ml streptomycin. hela cells were cultured in dmem supplemented with % fcs, u/ml penicil- lin, and lg/ml streptomycin. cells were maintained at °c in a % co humidified atmosphere. all media and supplements were obtained from invitrogen (darmstadt, germany). mice and tumor xenograft experiments animal studies were performed in agreement with the guide for care and use of laboratory animals published by the us national institutes of health (nih publication no. - , revised ), in compliance with the german law on the protection of animals, and with approval of the responsible regional authorities (regierung von unterfranken). nod.cb -prkdcscid/ncrhsd mice were bred at the animal facility at the center of experimental and molecular medi- cine (zemm) of the university of würzburg. equally housed and fed female mice of same size and age were randomly distributed ª the authors embo molecular medicine vol | no | kathrin philipp-abbrederis et al in vivo cxcr imaging of human myeloma embo molecular medicine published online: march , into experimental groups. a total of × mm. s or opm- cells in ll pbs were injected subcutaneously into the shoulder region of approximately -week-old animals. tumor growth was monitored using a shifting calliper. imaging experiments were initiated when tumor size reached – mm . mouse experiment samples sizes were chosen to allow descriptive and explorative statistical analysis. rna and protein extraction, real-time pcr and immunoblotting rna extraction was performed using the rneasy mini kit (qiagen, hilden, germany). cdna synthesis was performed using the omni- script rt kit according to the manufacturer’s protocol (qiagen, hilden, germany). real-time pcr was performed using platinum sybr-green qpcr supermix-udg (invitrogen) on an abi prism (applied biosystems). data analysis was performed by comparing ct values with a control sample set as . sequences for primers are available upon request. protein extracts ( lg per lane) were electrophoretically separated on a sds–page gel, transferred to membranes (millipore, darmstadt, germany), and blotted with antibodies specific for cxcr (clone umb ; abcam, cambridge, uk) and b-actin (clone ac- ; sigma-aldrich, taufkirchen, germany). flow cytometry white blood cell counts, hemoglobin and platelet counts were measured using an advia (siemens, erlangen, germany). blood samples from the patients of the imaging cohort were collected in heparin and filtered. circulating cd + cell counts were assessed in peripheral blood by standardized and certified single- platform flow cytometry on a cytomics fc analyzer (beckman coulter, krefeld, germany) at four different time points. cells were stained with antibodies to cd and cd (stem-kit im , clone ; cd -ecd, clone j ; beckman coulter). bone marrow samples from an unselected mm patient cohort were collected in heparin tubes and filtered. these analyses were performed upon signed informed consent of all patients to analysis of samples for scientific purposes in an anonymized fashion only. cell populations of interest were selected by sequential gating using kaluza flow analysis software (beckman coulter). the gating strat- egy is based on cd staining versus side-angle light scatter (ssc) properties as a primary gate to separate cd -positive lymphocytes, monocytes, and cd low progenitors from cd -negative plasma cells. plasma cells were then identified by cd /cd gating and cd negativity. colored back-gating was used to ensure correct gating of all subpopulations. for statistical data analysis, intensity of the isotype control on each subpopulation was subtracted from the median fluorescence intensity of surface cxcr expression in that population. details on the gating strategy used are given in supplementary figs s and s . the following antibodies were used: beckman coulter: cd -ecd (clone b e ), cd -ecd (clone j ), cd -pc (clone ucht ), cd -pc (clone bb ), cd -pc (clone rm ), cd -fitc (clone ), cd -fitc (clone t ), cd -pc (clone j . ), cd -pc (clone n ), and cd -pc (clone d hl . ); bd pharmingen: cxcr -pe (clone g ). surface cxcr levels of xenografted human mm cell lines were determined by flow cytometry (bd facscalibur, beckton-dickinson, heidelberg, germany) using an anti-cxcr -pe antibody (hcd ; clone g ; miltenyi, bergisch-gladbach, germany) according to the manufacturer’s instructions. data were analyzed using cellquest software (beckton-dickinson). synthesis of [ ga]pentixafor synthesis of [ ga]pentixafor was performed at both centers in a fully automated, gmp-compliant procedure using a grp module (scintomics gmbh, germany) equipped with disposable single- use cassette kits (abx, germany), using the method (demmer, gourni et al, and gourni, demmer et al, ) and standard- ized labeling sequence previously described (martin et al, ). prior to injection, the quality of [ ga]pentixafor was assessed according to the standards described in the european pharmaco- poeia for [ ga]-edotreotide (european pharmacopoeia; monograph / : ; available at www.edqm.eu). in vitro binding study binding of [ ga]pentixafor to mm. s and opm- mm cells was investigated using a modified standard protocol (lückerath et al, ). briefly, × cells in ll pbs were incubated with × counts per minute (cpm) radiotracer/ ll pbs (equaling approximately nm peptide per sample) for the indicated times. after the removal of unbound tracer and washing with pbs, binding of [ ga]pentixafor was quantified using a gamma-counter (wallac -wizard, perkin-elmer, rodgau, germany). all samples were measured in triplicate and corrected for background activity and decay. for competition experiments, mm cell lines were pretreated for min with amd lm (selleck chemicals, houston, tx, usa, ordered from absource diagnostics gmbh, munich, germany) before being objected to [ ga]pentixafor uptake analysis. in vivo cxcr imaging of mice positron emission tomography scans of xenotransplanted mm. s and opm- tumors in nod.cb -prkdcscid/ncrhsd mice were performed as previously described (graf et al, ). briefly, mice were intravenously injected with . mbq/mouse [ ga]pentixafor or mbq/mouse [ f]fdg and static images were acquired for min starting h post-injection on a lpet system (inveon, siemens, erlangen, germany). all mice received a [ ga]pentixafor pet scan and a second one with [ f]fdg the following day. tumor-to-background ratios of tracer intensity were calculated by placing three-dimensional regions of interest within the tumors and in healthy tissue (background). in competition imaging assays, amd ( mg/kg body weight, selleck chemicals) was intrave- nously injected immediately before [ ga]pentixafor was injected. pet scans were acquired h post-pet tracer injection. pet/ct and pet/mr imaging studies all [ f]fdg scans and / [ ga]pentixafor scans were performed on dedicated pet/ct scanners (siemens biograph mct ; siemens medical solutions, germany), whereas of [ ga] pentixafor scans were performed on a pet/mri device (siemens biograph mmr; siemens medical solutions, germany). before embo molecular medicine vol | no | ª the authors embo molecular medicine in vivo cxcr imaging of human myeloma kathrin philipp-abbrederis et al published online: march , http://www.edqm.eu acquisition of [ f]fdg pet scans, patients fasted for at least h prior to injection of a standard dose of . mbq per kg body weight. [ f]fdg was only injected if blood glucose levels were < mg/dl. prior to [ ga]pentixafor scans, patients fasted for at least h. injected activities ranged from to mbq. corresponding ct low-dose scans for attenuation correction were acquired using a low-dose protocol ( mas, kev, a × matrix, mm slice thickness, increment of mm/s, rotation time of . s, and pitch index of . ) including the base of the skull to the proximal thighs. in pet/mr, first a coronal -point dixon d volumetric interpolated examination (vibe) t weighted (t w) mr sequence was performed for generation of attenuation maps as recently published (drzezga et al, ). in addition, both a coronal t tse (tr/te / . , slice thickness mm, matrix × ) and a t w stir (short s inversion recovery) sequence with fat suppres- sion (tr/te/ti , ms/ ms/ ms, slice thickness mm, matrix × ) were acquired. consecutively, pet emission data were acquired in three-dimensional mode with a × matrix with – min emission time per bed position. after decay and scatter correction, pet data were reconstructed iteratively with attenuation correction using a dedicated software (siemens esoft). pet, ct and mr analysis all ct and mri scans were scored by a board-certified radiologist, and all pet scans were scored by a board-certified nuclear medicine physician. all pet scans were interpreted in a binary visual fashion as positive for disease or negative for disease according to the crite- ria previously described (zamagni et al, ). briefly, the presence of focal areas of detectable increased tracer uptake within bones (e.g., more intense than background bone marrow (bm) uptake excluding articular processes, with or without any underlying lesion identified by ct) were rated positive. if the scan was rated as posi- tive, disease manifestations were rated as either intra- and/or extra- medullary. intramedullary disease was then separately assessed for regions including head, spine (cervical, thoracic, lumbar), sacrum, pelvis (left and right), upper (left and right) and lower (left and right) extremities, as well as rib cage (left and right). involve- ment of the sternum went along in all patients with rib cage manifestations and was therefore not separately assessed. semi-quantitative analysis comprised calculation of maximum stan- dardized uptake values (suvmax) as well as suvmean by d rois with a diameter of . cm around the hottest pixel. up to lesions were recorded, if subjects presented with more than focal lesions (fl); they were categorized into the subgroup > fl. lesions in the appendicular skeleton were divided from those in the axial portions. diffuse bm involvement was considered if the tracer uptake was diffusely increased with a suvmax equal to, or greater than, the uptake in the spleen. the presence of extramedullary disease (emd), defined as [ f]fdg-avid tissue that, according to ct exami- nation, was not contiguous to bone and arose in soft tissue, was described by location and number of lesion. paramedullary disease arising from bone was considered as a lesion but not as emd. ct and mr scans were read as outlined previously (angtuaco et al, ). in ct, any osteolytic changes not related to degenera- tive or other benign changes (e.g., hemangioma) were rated as suspicious for mm. in mr, any focal lesion presenting with low signal intensity on t w tse images (signal intensity not higher than surrounding muscle) and high signal intensity on t -weighted sequences and stir images were judged as suspicious for mm. for intramedullary disease, the same regions were rated as in pet. in addition, any extramedullary lesions defined by extramedullary soft- tissue formations were noted. immunohistochemistry and immunofluorescence of patient biopsy material for immunohistochemistry, the following antibodies were used: anti-cd mouse (b-a ) monoclonal antibody (cell marque, ca, usa) and anti-cxcr rabbit polyclonal antibody (abcam). after deparaffinization and rehydration, the slides were placed in a pressure cooker in . m citrate buffer (ph . ) and were heated for min. incubation with the different antibodies was carried out overnight at °c. detection was performed with dako en vision system according to the manufacturer s protocol. for double immunofluorescence, primary antibodies were detected by incuba- tion with the following secondary antibodies: donkey anti-rabbit conjugated with dylight (jackson immunoresearch, suffolk, uk) and donkey anti-mouse conjugated with cy (jackson immuno- research). after incubation of slides with conjugated secondary antibody for min, slides were counterstained and mounted with mounting medium (vectashield, vector laboratories, burlingame, ca, usa). statistical analysis all statistical tests were performed using spss statistics version (ibm) or graphpad prism (graphpad software). p-values < . the paper explained problem malignancies of the hematopoietic or lymphoid tissues are mostly considered systemic diseases involving the whole body. therefore, systemic treatment approaches are applied, for example, classical chemotherapy or novel drugs. cancer cells evade such potentially effective and curative treatment by localizing to a putative protective niche, from where relapse is thought to occur. the chemokine/ chemokine receptor axis sdf- alpha/cxcr is a major determinant for recruiting cancer cells to this protective niche. results here, we provide the first evaluation of in vivo cxcr imaging in a series of patients with a particular cancer of the lymphoid system, multiple myeloma, using the cxcr -specific pet tracer pentixafor in comparison with the clinically established tracer fdg. we identify myeloma manifestations that are positive for cxcr uptake and establish the use of an in vivo biomarker imaging technique for future therapeutic/theranostic purposes. impact our findings identify the cxcr pet tracer pentixafor as a novel tool for in vivo imaging of multiple myeloma. this tracer is suitable for identifying patients who could be treated with cxcr -directed drugs, thus reflecting an in vivo biomarker. labeling of pentixafor or derived peptides with radionuclides or drug conjugation seems suitable for therapeutic targeting of the cancer cell and its protect- ing niche. ª the authors embo molecular medicine vol | no | kathrin philipp-abbrederis et al in vivo cxcr imaging of human myeloma embo molecular medicine published online: march , were considered statistically significant. quantitative values were expressed as mean � standard deviation or standard error of the mean (sem) or standard deviation (sd) as indicated. comparisons of related metric measurements were performed using wilcoxon signed-rank test, and the mann–whitney u-test or student’s t-test was used to compare quantitative data between two independent samples. analysis of variance (anova) statistical test was used to analyze the differences between group means. supplementary information for this article is available online: http://embomolmed.embopress.org acknowledgements we are grateful to e. schafnitzel, k. vollmer, n. wildegger, and v. hollnburger for assistance with bm sample flow cytometry. we thank the hematology/ medical oncology and nuclear medicine staff members at the institutions in munich and würzburg for their support. hjw, uk, and ms are supported by the deutsche forschungsgemeinschaft (dfg, sfb ). uk was further supported by deutsche krebshilfe (grant ) and dfg (grant ke / - ). this work received support from the german cancer consortium (dktk). author contributions kpa, ms, ep, kl, kf, mr, ar, as, ks, sk, kg, hs, sh, eh, and ss performed and interpreted the experiments. me, cg, akb, ajb, eh, cl, and kh analyzed and interpreted the imaging data. sk and he contributed retrospective patient data. uk, kh, akb, cp, ms, kl, and hjw designed the study, interpreted the data, and wrote the manuscript. all authors critically reviewed and approved the final manuscript. conflict of interest hj wester and s kropf are ceos of scintomics, the distributor of pentixafor. the remaining authors declare that they have no conflict of interest. references agarwal a, chirindel a, shah ba, subramaniam rm ( ) evolving role of fdg pet/ct in multiple myeloma imaging and management. ajr am j roentgenol : – aggarwal r, ghobrial ia, roodman gd ( ) chemokines in multiple myeloma. exp hematol : – aiuti a, turchetto l, cota m, cipponi a, brambilla a, arcelloni c, paroni r, vicenzi e, bordignon c, poli g ( ) human cd (+) cells express cxcr and its ligand stromal cell-derived factor- . implications for infection by t-cell tropic human immunodeficiency virus. blood : – alsayed y, ngo h, runnels j, leleu x, singha uk, pitsillides cm, spencer ja, kimlinger t, ghobrial jm, jia xy et al ( ) mechanisms of regulation of cxcr /sdf- (cxcl )-dependent migration and homing in multiple myeloma. blood : – angtuaco ej, fassas ab, walker r, sethi r, barlogie b ( ) multiple myeloma: clinical review and diagnostic 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farrugia an, kortesidis a, manavis j, to lb, martin sk, diamond p, tamamura h, lapidot t, fujii n et al ( ) elevated serum levels of stromal-derived factor- alpha are associated with increased osteoclast activity and osteolytic bone disease in multiple myeloma patients. cancer res : – zlotnik a, burkhardt am, homey b ( ) homeostatic chemokine receptors and organ-specific metastasis. nat rev immunol : – license: this is an open access article under the terms of the creative commons attribution . license, which permits use, distribution and reproduc- tion in any medium, provided the original work is properly cited. ª the authors embo molecular medicine vol | no | kathrin philipp-abbrederis et al in vivo cxcr imaging of human myeloma embo molecular medicine published online: march , can therapy dogs improve pain and satisfaction after total joint arthroplasty? a randomized controlled trial | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /s - - - corpus id: can therapy dogs improve pain and satisfaction after total joint arthroplasty? a randomized controlled trial @article{harper cantd, title={can therapy dogs improve pain and satisfaction after total joint arthroplasty? a randomized controlled trial}, author={c. harper and y. dong and t. thornhill and j. wright and j. ready and g. brick and g. dyer}, journal={clinical orthopaedics and related research®}, year={ }, volume={ }, pages={ - } } 	c. harper, y. dong, + authors g. dyer 	published 	medicine 	clinical orthopaedics and related research® backgroundthe use of animals to augment traditional medical therapies was reported as early as the th century but to our knowledge has not been studied in an orthopaedic patient population. the purpose of this study was to evaluate the role of animal-assisted therapy using therapy dogs in the postoperative recovery of patients after tha and tka.questions/purposeswe asked: ( ) do therapy dogs have an effect on patients’ perception of pain after total joint arthroplasty as measured by the vas… expand view on wolters kluwer europepmc.org save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations results citations view all figures, tables, and topics from this paper 	 figure 	 table 	 figure 	 figure 	 figure view all figures & tables 	arthroplasty 	tacrine 	pet therapy 	physiological sexual disorders 	canis familiaris 	subsection - htmllinktype 	pain perception paper mentions interventional clinical trial inpatient physical activity function through enhanced participation levels in animal-assisted therapy programs thousands of canines are used for therapy in health care centers throughout the united states as part of a volunteer therapy team, yet little is known about the outcomes provided by… expand 	conditions	muscle weakness, parkinson's disease, stroke 	intervention	behavioral aurora health care november - march citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency animal-assisted intervention improves pain perception in polymedicated geriatric patients with chronic joint pain: a clinical trial 	m. rodrigo-claverol, carles casanova-gonzalvo, belén malla-clua, esther rodrigo-claverol, júlia jové-naval, m. ortega-bravo 	medicine 	international journal of environmental research and public health 	 	 	pdf save alert research feed the effects of multi-disciplinary teamwork on pain relief and infection prevention in hip replacement 	j. lu 	 	pdf 	view excerpt, cites background save alert research feed patient dissatisfaction after total knee arthroplasty for advanced painful osteoarthritis 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alert research feed postoperative pain assessment tools in day surgery: literature review. 	a. coll, jamal r m ameen, d. mead 	medicine 	journal of advanced nursing 	 	 	view excerpt, references methods save alert research feed effect of psychopathology on patient-perceived outcomes of total knee arthroplasty within an indigent population. 	h. ellis, krista howard, m. khaleel, r. bucholz 	medicine 	the journal of bone and joint surgery. american volume 	 	 	view excerpt, references background save alert research feed animal-assisted therapy at an outpatient pain management clinic. 	d. marcus, c. bernstein, j. m. constantin, frank a kunkel, paula breuer, raymond b hanlon 	medicine 	pain medicine 	 	 	pdf 	view excerpts, references background save alert research feed impact of canine-assisted ambulation on hospitalized chronic heart failure patients' ambulation outcomes and satisfaction: a pilot study 	samantha abate, m. zucconi, b. boxer 	medicine 	the journal of cardiovascular nursing 	 	 	view excerpts, references background save alert research feed anxiety and depressive symptoms before and after total hip and knee arthroplasty: a prospective multicentre study. 	t. duivenvoorden, m. vissers, + authors m. reijman 	medicine 	osteoarthritis and cartilage 	 	 	 	view excerpt, references background save alert research feed commentary on “canine visitation (pet) therapy: pilot data on decreases in child pain perception” 	leslie k. robbins 	medicine 	journal of holistic nursing : official journal of the american holistic nurses' association 	 	 	pdf 	view excerpt, references background save alert research feed predictors of acute postsurgical pain and anxiety following primary total hip and knee arthroplasty. 	p. pinto, t. mcintyre, r. ferrero, a. almeida, v. araújo-soares 	medicine 	the journal of pain : official journal of the american pain society 	 	 	pdf 	view excerpt, references background save alert research feed the effects of animal-assisted therapy on wounded warriors in an occupational therapy life skills program. 	christine e beck, f. gonzales, carol haertlein sells, c. jones, theresa reer, y. y. zhu 	medicine 	u.s. army medical department journal 	 	 	pdf 	view excerpts, references background save alert research feed pet therapy effects on oncological day hospital patients undergoing chemotherapy treatment. 	m. orlandi, karina trangeled, + authors m. cantore 	medicine 	anticancer research 	 	 	view excerpt, references background save alert research feed ... ... related papers 	abstract 	figures, tables, and topics 	paper mentions 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue oral communications published online: july genetic aspects of migraine single nucleotide polymorphisms on the cacna e gene in subtypes of migraine with aura a. ambrosini, , m. d’onofrio, g.s. grieco, a. di mambro, c. casali, g. montagna, g.b. colazza, f. nicoletti, , g. nappi, j. schoenen, m.g. buzzi, f.m. santorelli, , f. pierelli inm neuromed, pozzilli (is), italy; european brain research institute, rome, italy; irccs san raffaele, rome, italy; university centre for adaptive disorders and headache (ucadh), university la sapienza, rome, italy; irccs bambino gesù, rome, italy; irccs c. mondino, pavia, italy; university of liège, belgium; irccs santa lucia foundation, rome, italy; e-mail: anna.ambrosini@neuromed.it background familial hemiplegic migraine (fhm), sporadic hemiplegic migraine (shm), and basilar-type migraine (bm) are phenotypically similar subtypes of migraine with aura (ma), differ- entiated only by motor symptoms, which are not present in bm. they are as well the only subforms of migraine where genetic defects have been found. fhm and some cases of shm are char- acterized by mutations on the cacna a gene (chromosome p ), coding for the main subunit of the p/q-type ca + channels. mutations on the atp a gene (chromosome q ), coding for the main subunit of the na+/k+ pump have been found in fhm and in one family affected by bm. however, some fhm patients do not bear mutations on these genes, so that at least a third fhm locus is expected (fhm ). one study identified an fhm locus on chromo- some q , which contains the cacna e gene, coding for the main subunit of r-type ca + channels, similar in function and loca- tion to the p/q-type. a linkage to the q locus has been suggested also for common forms of migraine. methods we searched for variations in the cacna e gene in a large group of migraineurs (n= ; migraine without aura (mo)= ; migraine with typical aura (ma)= ; basilar-type migraine (bm)= ; sporadic hemiplegic migraine (shm)= ; familial hemiplegic migraine-(fhm)= ; and in a control group n= ). screening was per- formed by direct sequencing on blood genomic dna. results we identified a novel single nucleotide polymorphism (d e) in exon of the cacna e gene. it was present in . % of control subjects and in % of migraineurs. it was significantly more represented in fhm, shm, and bm patients ( . %) than in ma patients ( . %, p= . ) and control subjects (p= . ). conclusions in this study we report a novel polymorphism in the cacna e gene (d e), which was particularly represented in some subtypes of migraine with aura, such as fhm, shm and bm. this finding supports the hypothesis that abnormalities on locus q and particularly on the cacna e gene may represent the genetic basis for some subforms of migraine with aura and that cacna e is a suitable candidate for fhm . lack of variations in the cacna a gene in patients affected by subtypes of migraine with aura , m. d’onofrio, a. ambrosini, a. di mambro, f.m. santorelli, g. grieco, c. casali, g.b. colazza, f. nicoletti, , g. nappi, j. schoenen, , f. pierelli, m.g. buzzi ebri, rita levi montalcini foundation, rome, italy; irccs neuromed, pozzilli (is), italy; irccs bambino gesù, rome, italy; irccs san raffaele, rome, italy; university centre for headache and adaptive disorders (ucadh), university la sapienza, rome, italy; irccs c. mondino foundation, pavia, italy; university of liege, belgium; irccs santa lucia foundation, rome, italy; e-mail: mara.donofrio@ebri.it introduction mutations in the cacna a gene on chromosome p , encoding a neuronal calcium channel subunit, have been found in patients affected by familial (fhm ) [ ] and sporadic hemiplegic migraine (shm) [ ]. some families with fhm (fhm ) [ ] and basilar-type migraine (bm) [ ] bear mutations on the atp a gene (chromosome q ). these findings suggest that fhm, shm and bm are not only phenotypically similar subtypes of migraine with aura but also allelic disorders. sib-pair [ , ] and linkage studies [ ] suggested that abnormalities on the cacna a gene may also be at the basis of common forms of migraine such as migraine without and with typical aura. in our study, we screened for cacna a gene variations in a group of probands with fhm, shm or bm and compared them to migraine patients with typical aura (ma), migraine patients without aura (mo), and control subjects. methods a total of migraine patients (mo (n= ), ma (n= ), fhm (n= ), shm (n= ), bm (n= )) and control subjects were enrolled and studied for gene screening after having obtained their informed consent. complete screening of the cacna a gene was obtained in bm patients and shm patient. two patients with fhm were screened for the mutations known in fhm [ ]. the remaining patients and controls were screened only for the variations found in the above preliminary patient groups. results none of the known mutations were found in the studied sub- jects. two new single nucleotide polymorfisms, e d and e v, were identified in the cacna a gene with similar prevalence in both migraine patients ( . % and . %, respectively) independently of subtype diagnosis and in controls ( . % and . %). conclusions cacna a gene mutations reported in the literature were not confirmed in our bm, fhm and shm patients. the variations we described are polymorphisms, since they were highly represented in mo and ma patients and in control subjects as well. our findings con- firm that cacna a gene variations are not present in most migraine patients, even affected by subtypes of migraine with aura supposed to be allelic disorders of fhm. references . ophoff ra, terwindt gm, vergouwe mn et al ( ) familial hemiplegic migraine and episodic ataxia type- are caused by muta- tions in the ca + channel gene cacnl a . cell : – . terwindt g, kors e, haan j et al ( ) mutation analysis of the cacna a calcium channel subunit gene in patients with spo- radic hemiplegic migraine. arch neurol : – . de fusco m, marconi r, silvestri l et al ( ) haplo- insufficiency of atp a encoding the na+/k+ pump alpha sub- unit associated with familial hemiplegic migraine type . nat genet : – . d’onofrio m, ambrosini a, santorelli fm et al ( ) a new muta- tion on the atp a gene in familial basilar migraine. cephalalgia : . may a, ophoff ra, terwindt gm et al ( ) familial hemiplegic migraine locus on p is involved in the common forms of migraine with and without aura. hum genet : – . terwindt gm, ophoff ra, van eijk r et al ( ) dutch migraine genetics research group involvement of the cacna a gene con- taining region on p in migraine with and without aura. neurology : – . nyholt dr, lea ra, goadsby pj et al ( ) familial typical migraine: linkage to chromosome p and evidence for genetic heterogeneity. neurology : – . headache classification subcommittee of the international headache society ( ) the international classification of headache disorders, nd edn. cephalalgia [suppl ]: – j headache pain ( ) : – doi . /s - - - a b s t r a c t s investigating the association between notch polymorphism and migraine b. borroni, c. brambilla, s. archetti, m. cossandi, e. venturelli, s. gipponi, g. dalla volta, l. caimi, a. padovani department of neurology, university of brescia, brescia, italy; department of biotechnology, iii laboratory of analysis, university of brescia, brescia, italy; department of neurology, “città di brescia” institute, brescia, italy; e-mail: bborroni@inwind.it background it has been recently demonstrated that migraine is char- acterized by subclinical brain infarctions and white matter lesions. several genetic risk factors have been associated with migraine, but no study has unravelled a possible relationship between migraine and notch , which is involved in vascular damage. mutations in the notch gene have been demonstrated to be pathogenetic for cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (cadasil), a small vessel disease of the brain characterized by migraine. objective the aim of the present study was to evaluate whether the functional notch polymorphism t c, which is not causative for cadasil, might be a risk factor for migraine. methods one hunderd and fifty-six migraine patients and headache-free healthy volunteers entered the study. demographic and clinical characteristics were carefully recorded, and a neurological work up was performed. moreover, each subject underwent blood sam- pling for notch genotype determination. results notch genotypes as well as allele frequencies did not differ in migraine patients compared to controls, even adjusting for the pres- ence of possible confounders. no difference was found either in migraine patients with or without aura. conclusions these findings support the view that the functional poly- morphism t c in the notch gene is not involved in increasing the risk of migraine or migraine subtypes. homocysteine and migraine: correlations with clinical, neurophysiological and neuroradio- logical features m. de tommaso, l. losito, p. livrea neurological and psychiatric sciences department, university of bari, bari, italy; e-mail: m.detommaso@neurol.uniba.it introduction increased homocysteine levels are associated with vari- ous pathological conditions in humans, including stroke and cardiovas- cular disorders. an association between the homozygous c t muta- tion in the , -methylenetetrahydrofolate reductase (mthfr) gene and serum homocysteine levels [ ] has been detected. in previous stud- ies, an over-representation of the t allele was observed in migraine patients compared to controls, specifically for the migraine with aura (ma) subtype [ ]. homocysteine acts as an excitatory amino acid and may influence the threshold and the evolution of migraine headache. objective this study was designed to determine the influence of homocysteine levels and the homozygous c t mutation on: ( ) the factors predisposing to migraine, evaluated with the steady-state visu- al-evoked response and the habituation of contingent negative variation (cnv); ( ) the severity of migraine, evaluated with the midas scale and the mean frequency of headache in the last months; and ( ) the mri picture. methods the mthfr c t variant was genotyped in migraine without aura (mo), ma patients, and controls. in all cases, cnv habituation and somatosensory visual-evoked potentials (ssveps) to medium and high frequency stimulation patterns were evaluated; twenty controls negative for the mthfr gene were admit- ted for neurophysiological examination. eighty patients were also admitted for mri study. results we observed an over-representation of the t allele in migraine patients compared with controls, more evident for the ma subtype: the mthfr variant was also associated with reduced habitua- tion pattern of cnv and enhanced photic driving. higher levels of homocysteine were linked with earlier onset of migraine, higher fre- quency of headache, and multiple gliotic, peri-ventricular areas on mri. discussion the mthfr variant seems to be linked with greater sever- ity of both ma and mo and increased migraine susceptibility: this finding may be reinforced by increased levels of homocysteine, which may cause impaired release of nitric oxide and increase the firing rate of trigeminal neurons, factors involved in the initiation and mainte- nance of migraine. conclusions the mthfr gene variant seems to enhance the suscep- tibility to migraine and to worsen its evolution. references . frosst p, blom hj, milos r et al ( ) a candidate genetic risk factor for vascular disease: a common mutation in methylenete- trahydrofolate reductase. nat genet ( ): – . kowa h, yasui k, takeshima t et al ( ) the homozygous c t mutation in the methylenetetrahydrofolate reductase gene is a genetic risk factor for migraine. am j med genet ( ): – physiopathological aspects of headaches i different behaviour of the somatosensory high- frequency ( hz) thalamo-cortical activity in migraine patients: during and in between attacks g. coppola, m. vandenheede, l. di clemente, a. ambrosini, a. fumal, v. de pasqua, j. schoenen university la sapienza, polo pontino-i.c.o.t., rome, italy; headache research unit, university departments of neurology and neuroanatomy, university of liège chr citadelle, liège, belgium; headache centre, department of neurological sciences, university of rome, rome, italy; irccs-neuromed, pozzilli, italy; e-mail: gianlu- ca_coppola@katamail.com background a deficit of habituation for different sensory modalities, including somatosensory, characterizes migraine patients between attacks. interestingly, this abnormal cortical information processing normalizes during an attack. since the exact mechanisms of this elec- trophysiological phenomenon are still under debate, we have studied the high-frequency oscillations (hfos) embedded in somatosensory evoked potentials (sseps) because they are thought to reflect spike activity in thalamo-cortical cholinergic fibers (early hfos) and in cor- tical inhibitory gaba (gamma-aminobutyric acid)-ergic interneurons (late hfos). subjects and methods forty-two untreated migraine patients with (ma) and without (mo) aura were recorded during (n= , mo, ma) and between attacks (n= , mo, ma) and compared with healthy volunteers (hv). sseps were filtered off-line (digital band- pass between and hz) to extract the two hfo bursts from the broad-band contralateral n somatosensory cortical response, obtained always by right median nerve stimulation. results amplitudes and latencies of conventional broad-band sseps recorded in migraine patients between attacks from cervical and pari- etal active electrodes were not significantly different from those found in hv. in contrast, maximum peak-to-peak amplitude and area under the rectified curve of the early hfo burst were significantly smaller in both mo and ma patients than in hv. there was no significant differ- ence in the later hfo burst between migraineurs and hv. during attacks, all electrophysiological measurements in migraineurs were similar to those found in hv. discussion these results support the hypothesis that a reduced pre- activation level of sensory cortices explains the lack of habituation phenomenon in migraineurs, and not cortical hyperexcitability or reduced intracortical inhibition. conclusions these results suggest that evoked activity in thalamo-cor- tical excitatory cholinergic afferents is interictally decreased in both migraineur groups, but normalises during an attack; whereas intracor- tical inhibition, as indexed by the late hfo burst, is normal at any time. the diffuse noxious inhibitory control system in chronic migraine tested by modulation of the blink reflex by remote painful conditioning stimuli m. de tommaso, l. losito, g. libro, c. serpino, g. barile, p. livrea neurologic and psychiatric sciences department, university of bari, bari, italy; e-mail: m.detommaso@neurol.uniba.it introduction a dysfunctional activation of brainstem structures inhibiting pain transmission was postulated in chronic migraine [ ]. the r component of the blink reflex is a very tempting model to explore trigeminal nociception [ ]. the aim of the study was to test the function of the diffuse noxious inhibitory control system (dnic) in chronic migraine, exploring the r suppression induced by painful stimulation of the hand, obtained by topical application of capsaicin. methods thirty headache patients were selected, were affected by migraine without aura, by chronic migraine and by chronic migraine with analgesic overuse. ten control subjects were also evalu- ated. all patients were free from migraine during the evaluation. the blink reflex was elicited by electrical stimuli delivered to the right supraorbital nerve, settled at an intensity ma over the threshold of the r . therefore, the r response was obtained min and min after the application of ml of % capsaicin in a cream base (teofarma) on the skin of the dorsum of the right hand, within an area of cm . all patients were requested to rate the pain induced by capsaicin using a – visual analogue scale (vas). results in control subjects the integral of r was reduced by about %, while the rate of r suppression after conditioning painful stim- ulation was on average % in migraine without aura patients, % in chronic migraine, and % in chronic migraine with analgesic overuse. chronic migraine rated the capsaicin elicited pain with higher vas scores with respect to controls. in the whole migraine group, the rate of r suppression was significantly reduced with the increase of illness duration and headache frequency. the rate of r suppression was also significantly correlated with the subjective rating of capsaicin induced pain in patients and controls. discussion and conclusions these data could suggest that the dys- function of inhibitory control of pain may be intrinsic to migraine, but it can predispose to chronic migraine and analgesic overuse. it may be linked with the phenomenon of generalized hyper-algesia, which may persist outside the attack, leading to a self-outstanding circuit favour- ing the maintenance of headache. references . welch km, nagesh v, aurora sk, gelman n ( ) periaqueductal gray matter dysfunction in migraine: cause or the burden of illness? headache ( ): – . ellrich j ( ) trigeminal nociceptive reflexes. mov disord [suppl ]:s –s interictal inhibition of the nociceptive specific r blink reflex component is normal in migraine without aura patients g. coppola, l. di clemente, a. fumal, d. magis, v. de pasqua, j. schoenen university la sapienza, polo pontino, i.c.o.t., rome, italy; headache centre, department of neurological sciences, university of rome, rome, italy; headache research unit, university departments of neurology and neuroanatomy, university of liège chr citadelle, liège, belgium; e-mail: gianluca_coppola@katamail.com background in migraine patients, sensitisation of the spinal trigeminal nucleus neurons has been hypothesised during an attack (burstein et al., brain ; kaube et al., neurology ). there is also some evi- dence that such sensitisation could persist for some time between attacks. a deficit of habituation was detected in migraineurs for a brain stem reflex, the nociceptive specific blink reflex (nbr) (katsarava et al., ): the question arises whether this phenomenon could be relat- ed to peripheral or central sensitisation in the trigeminal system. the r response can be suppressed by prior stimulation of the supraorbital nerve and its recovery curve after paired stimuli depends on the excitability of the trigemino-facial circuit. moreover, the r response can be suppressed also by peripheral nerves (rossi and scarpini, ), via activation of inhibiting central reticular nuclei (valls-solé et al., ). in order to shed light on the mechanisms of the interictal brainstem dysfunction in migraine, we have studied recovery curves of the r component of the nbr after conditioning by supraorbital or index finger stimuli in untreated migraine without aura patients (mo) between attacks and in healthy volunteers (hv). subjects and methods we recorded the recovery curve of the r nbr in mo patients and in a group of hv, in a first session by paired supraorbital identical stimuli, and in a second after a single shock delivered through ring electrodes to phalanges i and ii ipsilateral to the preceding supraorbital stimulus. both conditionings were performed at interstimulus intervals (isi) ranging from to ms, which allowed computation of a recovery curve. results the nbr recovery curves were normal for both the paired supraorbital and the peripheral index finger stimuli in migraineurs compared to healthy volunteers. conclusions these results are not in favour of persistent interictal sen- sitisation in the spinal trigeminal sensory system. they also suggest that the control of medullary r interneurons, notably by descending brainstem pathways, is normal in migraine between attacks. therefore, neither central nor peripheral sensitisation are likely to be responsible for the interictal habituation deficit of the nociceptive blink reflex in migraine patients. habituation deficit of the visual-evoked gamma band responses in migraine patients between attacks g. coppola, a. ambrosini, l. di clemente, d. magis, a. fumal, p. gérard, , f. pierelli, j. schoenen university la sapienza, polo pontino, i.c.o.t., rome, italy; irccs- neuromed, pozzilli, italy; department of neurological sciences, university la sapienza, rome, italy; headache research unit, university departments of neurology and neuroanatomy, university of liège chr citadelle, liège, belgium; e-mail: gianluca_coppo- la@katamail.com background two abnormal visual information processings character- ize migraine patients between attacks: habituation deficit to repetition of the same stimulus, and the experience of more discomfort during visual stimulation, e.g. environmental light and pattern reversal on a screen. pre- and post-synaptic or pre-cortical and cortical contributions have been hypothesized in the generation of visual-evoked oscillations in the gamma frequency range (gfos, – hz) (carozzo et al., ). moreover, these gfos may underlie the perception of visual discomfort (adjamin et al., ). subjects and methods we extrapolated the gfos from the broad- band visual-evoked potentials (veps) with an off-line band pass dig- ital filter ( – hz) in a group of healthy volunteers (hv, n= ), and in a group of migraine with (ma, n= ) and without aura (mo, n= ) patients between attacks. we analysed peak-to-peak amplitude and habituation (the amplitude change (%) between the st and th block of sequential averaged responses) of the conventional broad-band n -p and every peaks of gfo bursts evoked by a checkerboard pattern. results amplitude of the early components in the st block ( sweeps) was significantly increased only in ma patients (p= . ). there was significant habituation deficit of the late gbo peaks, but not of the early ones, in migraineurs (ma and mo) compared with hv (p< . ). conclusions the lack of habituation of the late gfo burst mimics that of the broad-band vep and suggests that postsynaptic mechanisms are responsible for this most reproducible abnormality of sensory process- ing in migraine. however, it could also be hypothesized that the increased amplitude of early gfo is related to the visual discomfort commonly experienced in migraineurs, more frequently in ma. repetitive transcranial magnetic stimulation (rtms) modulation of the visual cortex of healthy subjects undergoing light deprivation: a human model to study the pathophysiology of migraine f. brighina, m. francolini, g. giglia, a. palermo, s. scalia, b. fierro department of neurology, ophthalmology, otorhinolaryngology and psychiatry, university of palermo, palermo, italy; e-mail: filippo.brighina@virgilio.it introduction we reported paradoxical facilitation by hz rtms in the visual cortex of migraineurs with aura and interpreted these results as due to inefficiency of the inhibitory circuits, unable to be up-regulated by low-frequency rtms [ , ]. light deprivation (ld) is known to increase visual cortical excitability through down-regulation of gaba circuits. on this basis, we investigated rtms modulatory effects in nor- mal subjects undergoing ld with the following aims: first, to explore further the effects of ld on visual cortex excitability; and second, to evaluate if, in a condition of reduced inhibition such as ld, healthy subjects show paradoxical effects like those reported in migraineurs. subjects and methods six healthy subjects reporting reliable induc- tion of phosphenes by occipital tms underwent min of complete ld. phosphene threshold (pt) was measured before (t ), after min (t ) and min (t ) of ld, and then every ten minutes after light re- exposure until recovery to t values. repetitive tms (at hz or hz) was applied in separate sessions in the last min of ld. pts sig- nificantly decreased after min of ld. rtms differentially modified the effects of min ld on pts depending on stimulation frequency. hz rtms did not change the decreasing of pt values as observed in baseline condition, but significantly prolonged the time to recover t pt values after light re-exposure. by contrast, hz rtms signifi- cantly increased pt and the time to recover t pt values after light re- exposure was shortened. conclusions the results of this study show that the modulatory effects of different rtms frequencies on visual cortex critically depend on the pre- existing excitability state of inhibitory and facilitatory circuits. indeed, during ld healthy subjects behave like migraineurs and this could pro- vide a useful human model to study the pathophysiology of migraine. references . brighina f, piazza a, daniele o, fierro b ( ) modulation of visual cortical excitability in migraine with aura: effects of hz repetitive transcranial magnetic stimulation. exp brain res ( ): – . fierro b, ricci r, piazza a et al ( ) hz rtms enhances extras- triate cortex activity in migraine: evidence of a reduced inhibition? neurology ( ): – motor cortex excitability to focal transcra- nial magnetic stimulation (tms) in unilateral migraine patients p. cicinelli, m. zaccagnini, b. marconi, d. cologno, r. formisano, m.g. buzzi irccs fondazione santa lucia, rome, italy; e-mail: p.cicinelli@ hsantalucia.it introduction motor cortex excitability changes have been reported in migraine and numerous studies have yielded interesting, but partly controversial results. we employed focal tms to evaluate motor cor- tex excitatory and inhibitory properties in unilateral migraine patients. patients and methods motor evoked potentials (meps) were record- ed from the adm muscle of patients ( ± . years) with unilateral migraine with or without aura (frequency attack – /month). tms was performed days after the last attack. seven patients had a post-tms headache within hours following the tms recording (subgroup a = post-tms attack), whereas patients did not (subgroup b = no post- tms attack). the following tms parameters were analysed in both hemispheres and compared to those of healthy subjects: (a) resting motor threshold (rmt); (b) cortical silent period (csp) duration at threshold ( %) and from % to % of threshold values; (c) short- (s-ici= – ms) and long- (l-ici= ms) intracortical inhibition to paired-tms. results rmt, s-ici and l-ici were not significantly different between the two subgroups of patients and between patients and con- trols. csp duration at threshold was significantly shorter in subgroup b (no post-tms attack) than a (post-tms attack; p< . ). in sub- group a, csp duration increased linearly from % to % of threshold intensity. such a stimulus intensity/silent period duration curve was very similar to that observed in normal subjects. conversely, in patients without post-tms attack, the linear csp progression was interrupted at tms intensities of % above threshold. discussion abnormalities of inhibitory motor cortex circuits as revealed by csp duration analysis were found in both hemispheres of patients with no migraine attack after tms recordings. in contrast, in patients with post-tms headache, no abnormalities were observed. conclusions our findings confirm that the motor cortex is dysfunc- tioning interictally in unilateral migraine. furthermore, from our data we speculate that a “time window” could exist next to the migraine attack, during which motor cortical inhibitory mechanisms tend to normalise. physiopathological aspects of headaches ii cerebrospinal fluid levels of anandamide and palmitoylethanolamide suggest a failure of the endocannabinoid system in chronic migraine with and without analgesic overuse p. sarchielli, l.a. pini, c. rossi, a. floridi, p. calabresi neurologic clinic, department of medical and surgical specialties and public health, university of perugia, perugia, italy; institute of clinical pharmacology, university of modena and reggio emilia, modena, italy; e-mail: headache@unipg.it background cannabinoid receptors and their endogenous ligands con- stitute a novel modulatory system that is involved in specific brain functions, such as control of movement, memory, neuroendocrine reg- ulation, and also nociception [ ]. based on experimental evidence of the antinociceptive action of endocannabinoids and their role in mod- ulating trigeminovascular system activation, we hypothesized a dys- function of this system in chronic migraine. objectives we determined the levels of the endogenous cannabinoids arachidonoylethanolamide (anandamide, aea), palmitoylethanolamide (pea) and -arachidonoylglycerol ( -ag) in the cerebrospinal fluid (csf) of patients with chronic migraine (cm), patients with prob- able chronic migraine and probable analgesic-overuse headache (pcm+paah), and controls. methods endogenous cannabinoids were purified from csf by high- performance liquid chromatography, and quantified by isotope dilution gas-chromatography/mass-spectrometry. cgrp levels were also deter- mined by ria method and nitrites by hplc. results csf concentrations of aea and pea were significantly lower in cm and pcm+paah patients than in controls (p< . and p< . , respectively). in contrast, the levels of -ag were below detection in both patient and control groups. a negative correlation emerged between aea and pea and both cgrp and nitrite levels in both patient groups. conclusions reduced levels of anandamide and palmitoylethanolamide in the csf of cm patients suggest failure of the endogenous cannabinoid system and intercellular signalling that may contribute to chronic head pain, which seems to be related to increased cgrp and no production. this can be related to a failure of the inhibitory role of aea on trigemi- novascular system activation via cb( ) receptors localized on fibres in the spinal trigeminal tract and spinal trigeminal nucleus caudalis. the failure of the inhibitory role of aea and also of pea can therefore con- tribute to maintaining central sensitization in chronic head pain together with ngf and bdnf release via glutamatergic transmission, reflected in higher levels of the sensory neuropeptide cgrp and no production. the above findings support the potential role of the cb( ) receptor as a pos- sible therapeutic target in these patients [ ]. references . mbvundula ec, rainsford kd, bunning ra ( ) cannabinoids in pain and inflammation. inflammopharmacology ( ): – . russo eb ( ) clinical endocannabinoid deficiency (cecd): can this concept explain therapeutic benefits of cannabis in migraine, fibromyalgia, irritable bowel syndrome and other treat- ment-resistant conditions? neuro endocrinol lett ( – ): – nociceptin levels in cerebrospinal fluid of chronic migraine and fibromyalgia patients p. sarchielli, c. rossi, f. coppola, a. alberti, a. floridi, p. calabresi neurologic clinic, department of medical and surgical specialties and public health, university of perugia, perugia, italy; e-mail: headache@unipg.it study background nociceptin is the endogenous ligand of the g-cou- pled naloxone-insensitive orl-receptor. an increased expression of both nociceptin and orl( ) receptors has been demonstrated in the dorsal horn of rat spinal cord in experimental pain models, thus indi- cating the involvement of the nociceptin/orl( ) system in the mech- anisms of pathological pain [ ]. objective the present study was aimed at investigating the cere- brospinal fluid (csf) levels of nociceptin and pge in chronic migraine (cm) patients, patients with probable chronic migraine (pcm) and probable analgesic-abuse headache (paah), and patients affected by primary fibromyalgia syndrome (pfms). control values for nociceptin and pge were obtained from the csf of sub- jects, for whom laboratory and instrumental investigations excluded diseases of the central and peripheral nervous systems. methods csf nociceptin and pge levels were determined by sensi- tive immunoassays. results nociceptin and pge levels were significantly higher in the csf of patients with cm, pcm+paah and pfms compared with con- trols (nociceptin = p< . , p< . , p< . ; and pge = p< . , p< . , p< . , respectively), without significant differences among patient groups. a significant correlation emerged between csf noci- ceptin and pge levels in cm (r= . , p< . ) and pcm+paah (r= . , p< . ) patients and also pfms patients (r= . , p< . ). discussion nociceptin/orphanin fq (noci/ofq), the endogenous lig- and for the orphan orl( ) (opioid receptor-like ), has been shown to be anti- or pronociceptive and modifies morphine analgesia in rats after central administration. a pronociceptive action of nociceptin related to pge secretion can be hypothesized in both chronic migraine and fibromyalgia, where it seems not to be influenced by analgesic abuse but rather is related to chronic pain per se [ ]. references . maile r, walker rj, sharma rp, bagust j ( ) effects of noci- ceptin and analogues of nociceptin upon spontaneous dorsal root activity recorded from an in vitro preparation of rat spinal cord. neurosci lett ( ): – . baraniuk jn, whalen g, cunningham j, clauw dj ( ) cerebrospinal fluid levels of opioid peptides in fibromyalgia and chronic low back pain. bmc musculoskelet disord ( ): effects of distraction on analgesia and spatial discrimination of painful stimuli in migraine m. de tommaso, m. guido, g. libro, u. baumgartner, r.d. treede neurologic and psychiatric sciences department, university of bari, bari, italy; institute of physiology and pathophysiology, johannes gutenberg university, mainz, germany; e-mail: m.detommaso@neurol.uniba.it introduction in a previous study on laser-evoked potentials (leps) in patients with migraine without aura (mo) and chronic migraine (cm), a reduced effect of distraction in suppressing the cortical response to painful stimuli was detected in both mo and cm [ ]. objective the aim of this study was to test the effects of arithmetic tasks on spatial discrimination of painful laser stimuli and pain sensi- tivity in a cohort of mo and cm patients, compared to healthy controls. subjects and methods ten mo and cm patients were examined in a pain-free period and compared to age- and sex matched controls. four series of laser pulses were applied on the dorsum of the left and right hands, onto two parallel lines located on the ulnar and radial side. all subjects were asked to perform spatial discrimination tasks (ulnar or radial side) after each laser stimulus, using two levels of task difficulty to emphasize the sensory-discriminative aspect of pain, also specifying the subjective pain rating according to a visual analogue scale – . in run taken randomly for both hands in the two levels of task difficulty, spatial discrimination tasks were contrasted with active distraction by mental arithmetic, consisting of serial subtractions of four-digit-numbers in steps of or . electroencephalogram (eeg) was recorded by electrodes, placed at the standard positions of the international / system, with adjunctive electrodes. results the discrimination ability was the same across the three groups, but the effects of distraction on pain sensitivity was significantly reduced in both mo and cm groups in respect to controls. cm patients showed a slightly reduced ability in arithmetic tasks in respect to con- trols, and the effects of distraction on spatial discrimination was reduced in respect to normal controls. the rate of amplitude suppression of leps was also reduced in cm patients during mental arithmetic tasks. discussion and conclusions a reduced analgesic effect of distraction was confirmed in migraine: in cm patients, a slightly reduced arith- metic ability was linked with higher spatial discrimination of painful stimuli. this phenomenon may be attributed to enhanced activation of the cortical areas underlying the attentive components of pain, and it may also be favoured by slight cognitive impairment linked with the progression of migraine. reference . de tommaso m, valeriani m, guido m et al ( ) abnormal brain processing of cutaneous pain in patients with chronic migraine. pain ( – ): – enhanced trigemino-cervical-spinal reflex recovery cycle in pain-free migraineurs f. pierelli, m. serrao, a. perrotta, , m. bartolo, p. rossi, l. parisi, g. fiermonte, f. pauri, g. sandrini uo riabilitazione, polo pontino-i.c.o.t., university la sapienza, rome, italy; ucadh, irccs c. mondino, university of pavia, pavia, italy; ucadh, ini grottaferrata, grottaferrata, italy; ucadh, department of neurology and otorhinolaringology, university la sapienza, rome, italy; e-mail: francesco.pierelli@uniroma .it introduction trigemino-cervical-spinal reflexes (tcsrs) are part of a complex nociceptive response involving the cervical and the upper limb muscles, and are modulated by supraspinal inhibitory pathways; it may thus be possible to use tcsrs to explore the trigeminal system in migraineurs. the aim of the present study was to evaluate tcsrs in a group of migraine patients during the pain-free period. patients and methods forty-three migraine patients, without aura (mo), and with aura (ma) and age- and sex-matched healthy subjects took part in the study. tcsrs were obtained by stimulating the supraorbital nerve (son) and recording from the semispinalis capitis muscle and the biceps brachii. the latency (l, ms), area (a, mvms) and recovery cycle of the reflexes were recorded. the effects of het- erotopic painful stimulation on the neurophysiological parameters were studied by a validated cold pressor test (cpt). results no significant changes were found between either migraine patients and controls or mo and ma patients in the mean values of l and a of tcsrs (t-test, p> . ). the recovery curve of the trigemino-cervi- cal reflexes (tcrs) was significantly faster in migraine patients than in controls, while no differences were found in the trigemino-spinal reflex- es (tsrs) (t-test, p< . ). activation of the diffuse noxious inhibitory controls (dnics) through the cpt induced a significant reduction in the areas of the tcrs and tsrs in both migraine patients and controls (paired t-test, p< . ), though the extent of this reduction did not differ significantly between migraineurs and controls (t-test, p> . ). conclusions our data suggest that the pain-free period in migraine patients is characterised by hyperexcitability of the trigeminal path- ways and of their anatomical and functional connections with the upper cervical cord neurons, and that this abnormal hyper-excitability does not appear to be due to a lack of supraspinal inhibitory modulation. neuroendocrine function is altered in patients with chronic migraine and medication-overuse headache i. rainero, m. ferrero, e. rubino, w. valfrè, m. pellegrino, e. arvat, r. giordano, e. ghigo, p. limone, l. pinessi neurology iii, headache centre, department of neuroscience, university of turin, turin, italy; division of endocrinology, department of internal medicine, university of turin, turin, italy; division of endocrinology, mauriziano “umberto i” hospital, turin, italy; e-mail: irainero@molinette.piemonte.it introduction chronic migraine (cm) is a major health problem. cm is frequently associated with psychiatric comorbidity, like anxiety and depression, and often complicated by overuse of acute medication drugs. the effects of analgesic overuse on endocrine functions in cm patients are still unknown. the purpose of this study was to investigate neuroendocrine function in patients with cm and medication-overuse headache (moh). subjects and methods eighteen patients ( women, men; mean age±sd = . ± . years) with cm and moh, diagnosed according to ichd-ii criteria, and healthy controls ( women, men; mean age±sd = . ± . years) received intravenous administration of ghrh, hcrh, and trh. plasma concentrations of gh, tsh, acth and cortisol were measured in a min period after administration of the specific releasing hormones. results hormonal baseline concentrations were similar in both groups. gh response to ghrh was significantly reduced in patients with cm- moh in comparison with controls. after hcrh administration, acth and cortisol concentrations were significantly higher in patients than in controls. a significant positive correlation (r= . , p= . ) between duration of disease and altered hormonal response was found. discussion our study indicates that, in patients with chronic migraine and abuse of analgesic drugs, hypothalamic control of corticotropic and somatotropic functions is significantly altered. these findings are in accord with a previous study showing an abnormal pattern of spon- taneous hypothalamic hormonal secretion in patients with cm. a rela- tionship between altered hormonal secretion and some of the clinical symptoms of patients with cm-moh may be hypothesised. conclusions our data support a role for the hypothalamus in the mech- anisms of migraine chronicity and suggest the need for additional stud- ies evaluating the relationship between abuse of antimigraine drugs and hormonal alterations in chronic migraine. clinical aspects of headaches i prevalence of headache in a group of patients at first visit to a territorial neurolog- ical centre v. saporito, c. morreale, g.b. la pegna, v. raieli, f. brighina neurology service, bagheria, a.s.l. , palermo, italy; neurology service, p.o. e. albanese, a.s.l. , palermo, italy; neuroscience department, a.s.s. , caltanissetta, italy; child neuropsychiatry department, “g.f. ingrassia” hospital, a.u.s.l. palermo, italy; department of neurology, university of palermo, palermo, italy; e- mail: v.saporito@tin.it introduction headache is one of the most common types of neurolog- ical symptoms that patients complain of to the neurologist; in fact, pre- vious studies suggest that headache is one of the main reasons for vis- iting a neurological office. our clinic is in bagheria (sicily) and serves a population of more than people. the aim of this study was to determine how many patients at first visit had headache as a dominant symptom. patients and methods we retrospectively analysed the clinical records of consecutive patients who came to our office for the first time for a neurological examination. we did not use any other criterion for selection. results the mean age of group a was years (range – ); ( %) were woman, ( %) men, and . % of patients were over years of age. headache was the reason for the visit in ( . %) patients ( m, f). group b was composed of patients aged to years (mean age ), women and men, of whom ( . %) suffered from headache ( m; f). in group a, . % of males and . % of females suffered from headache, whereas in group b, . % of males and . % of females were affected by headache. the males who had headache were . % in group a and . % of all in the group b, the females were . % in group a and . % in group b. discussion and conclusions this epidemiological study confirms that headache is the most common reason for visiting in adult neurological patients and the prevalence of this disease increases in the group aged to years. in terms of percentages, there was a small difference between the two male age groups (> . % in group b), whereas we found a major female preponderance in group b (> . %). presumably, migraine prevalence increases more rapidly in women, from menarche to about the age of due to alterations in hormonal levels, after which prevalence decreases with respect to men. evaluation of headache frequency: a compari- son between two methods l. savi, p. de martino, l. pinessi primary headache centre, neurology iii, department of neurosciences, university of turin, molinette hospital, turin, italy; e- mail: lsavi@molinette.piemonte.it in the management of the headache patient an accurate evaluation of headache frequency is very important for many different reasons (e.g., to decide if a prophylactic treatment is necessary, to identify the best drug to be used, to evaluate treatment efficacy, etc.). it is possible to obtain this information directly from the patient’s history, or from the patient’s headache diary. to determine if these two methods are equiv- alent, a group of headache patients ( females and males, age range – years, mean age±sd = . ± . years), of whom ( females and males, mean age±sd = . ± . years) suffering from migraine without aura (mo) and ( females and males, mean age±sd = . ± . years) suffering from coexisting mo and episodic tension-type headache (etth), diagnosed according to ichd-ii criteria, were studied. all patients were asked how many days with headache they usually had in a -week period. then, each patient had to record all the days in which he/she experienced headache in a -week period headache diary. headache frequency assessed by an interview was compared with that obtained from the diary. the two data were considered corresponding when the difference did not exceed days (more or less), otherwise they were considered not cor- responding. the patients in both groups were also subdivided into sub- groups based on age and sex. in ( . %) patients, the headache diary data matched those provided by the interview. this correspon- dence was almost the same in all the different groups studied. when the data did not correspond, patients suffering from coexisting mo and etth generally recorded a higher number of days with headache in the diary than the one derived from the interview more often than mo patients (p< . ). in conclusion, while both these methods can be used to determine headache frequency, they do not correspond exactly. since, in our experience, both methods can be imprecise, it is always better to combine them. emotions in primary headache: a preliminary study m. grobberio, a.h. cronin, f. di palma, r. sterzi laboratory of neuropsychology and clinical psychology, department of neurology, s. anna hospital, como, italy; headache centre, department of neurology, s. anna hospital, como, italy; e-mail: mon- ica.grobberio@hsacomo.org background recent studies suggest a growing interest in the relation- ship between headache and psychological aspects [ , ]. in order to underline that psychological information might be useful in treating such patients, we analysed both psychological symptoms and the emotional profile of our headache patients. a further aim of this study was to define if emotional or psychopathological traits might influence perception of quality of life. we report our preliminary data on the first patients. patients and methods five female patients with primary headache ( migraine without aura (mo); tension-type headache (tth); anal- gesic rebound headache (arh)) were studied with a global psycho- logical assessment. minnesota multiphasic personality inventory– (mmpi- ), cognitive behavioral assessment (cba), profile of mood states (poms) and short form– (sf ) were administered. patients also underwent a psychological-clinical interview. non parametric cor- relations (r pearson), qualitative analysis of data and clinical profile observation were performed. results our patients showed high levels in mmpi-based scale (hypochondriasis), (psychasthenia) and (schizophrenia), in mmpi-content scale hea (health worry), in poms-factor t (tension-anxiety) and a (anger). on the contrary, they showed low levels in sf -subscales rf, df and as. cba did not add any signif- icant information. sf -as subscale correlates with mmpi-based scale (hysteria: r=- . , p= . ), mmpi-content scale hea (r=- . , p= . ) and poms-v factor (r=. , p= . ). poms-t fac- tor correlates with mmpi-based scale (paranoia: r= . , p= . ), mmpi-content scale ang (r= . , p= . ) and poms-d factor (r= . , p= . ). discussion according to the literature, our patients confirm high anx- iety levels in formal psychological testing [ ]. this agrees with the diagnosis of anxiety disturbances according to dsm-iv, as emerged from the psychological-clinical interview, even though some subclini- cal depressive symptoms might appear. our data suggest that quality of life is not influenced primarily by pain perception itself, but by worries about pain-related fear. this seems to limit social interactions by avoidance behaviour [ ] and to determine general reduction of self- esteem. moreover, our patients showed an important impairment in emotional focusing due to a more selective attention to somatic symp- toms and mental distress. conclusions our data may suggest that individual cognitive-behav- ioural psychotherapy and/or supervised mutual self-help groups could be the right tools to improve emotional recognition in headache patients. this might influence quality of life perception and the com- pliance to medical treatment. references . bigal me, sheftell fd, rapoport am et al ( ) mmpi personal- ity profiles in patients with primary chronic headache: a case-con- trol study. neurol sci ( ): – . cao m, zhang s, wang k et al ( ) personality traits in migraine and tension-type headaches: a five-factor model study. psychopatology ( ): – . mongini f, ibertis f, barbalonga e, raviola f ( ) mmpi- pro- files in chronic daily headache and their relationship to anxiety lev- els and accompanying symptoms. headache ( ): – . norton pj, asmundson gj ( ) anxiety sensitivity, fear, and avoidance behavior in headache pain. pain ( – ): – work-related injuries and headache among hos- pital employees e. pucci, s. buscone, l. balloni, m. bartolo, g. sandrini, , g. nappi university centre for adaptive disorders and headache (ucadh), university of pavia, irccs “c. mondino”, pavia, italy; department of clinical neurology and orl, university la sapienza, rome, italy; e-mail: ennio.pucci@mondino.it introduction the constitution regulates and protects workers also in work accidents. the work accident is defined as an accidental event that happens from a violent cause during work which causes an injury. aim the objective of the present study was to monitor the headache frequency in a hospital environment in employees who had reported work-related injuries. subjects and methods this open, observational, and prospective study was conducted at the irccs “c. mondino” of pavia, from january to december , involving hospital employees. all employees who had reported accidents, including employees who were never absent from work ( days prognosis) were considered. the study involved all patients with headache visited by an occupational physi- cian for injuries which occurred while working. a schedule for noso- graphic framing of headache based on ihs criteria ( ) was admin- istered to workers who suffered from headache during the periodic control visits (health survey protocol). results a total of work-related accidents were registered, with an accident incidence of per month, and total days of absence from work (mean days/injury . ). in the injured population ( m, f; mean age . ± . years), were headache sufferers ( m, f; mean age ± . years). the headache subtype distribution was: episodic cluster headaches, episodic tension headaches, and migraine without aura. among these, migraine without aura and episodic tension headache subjects had injuries and migraine with- out aura subject had injuries. the most frequent accident was the nee- dle prick, and the most serious was that occurring during working activities or “in itinere”. discussion data show that the frequency of headache among workers who suffered an injury is . %. the reduction in attention and the dis- ability induced by headache or by post-pharmacological effects may be identified as possible risk factors that cause accidents in workers who suffer from headache. conclusions it is useful that occupational physicians investigate indi- vidual headache susceptibility during both the pre-hiring phase and routine control visits, also in relation to the employee’s work activity. this study will continue to monitor the presence and/or absence of headache at the time of injury to further study the relationship between headache and work injuries. headache centre in an emergency department: a follow-up study on the evaluation of clinical and disability improvement in a migraine sample c. mostardini, v. villani, g. bruti, f. di stani, l. scattoni, d. dugoni, r. cerbo pain centre “enzo borzomati”, headache unit, azienda policlinico umberto i rome, department of neurological science, university la sapienza, rome, italy; e-mail: claudio.mostardini@uniroma .it introduction headache accounts for %– % of admissions to an emergency department (ed). the majority of patients who present to an ed with acute primary headache have migraine and little is known about their disability. aim the aim of this study was to evaluate the clinical impact of the collaboration between headache centre (hc) and ed in the diagnosis and treatment of migraine. in particular, we aimed to evaluate the dis- ability of this population before and after a three-month period of ther- apy in a headache centre (hc). patients and methods all the patients admitted to our hc within h after discharge from an ed were included. at admission to our hc, patient data were collected on the basis of international headache society criteria (ichd-ii) and they underwent the migraine disability assessment (midas) (t ). a clinical evaluation was per- formed at (t ) and at (t ) days from baseline, and at the t visit, disability was again re-evaluated with the midas scale. results out of patients admitted to our hc, ( m/ f; age ± years) met ichd-ii criteria for migraine or its complica- tions (e.g. status migrainosus and/or chronic migraine). seventeen percent of migraineurs had previously seen a headache specialist and % had used a triptan before. we observed a t follow-up visit in % of migraineurs. from a clinical point of view, we observed a significant reduction in days/months with headache from at t to at t (p< . ). in regards to midas, high level grades at baseline visit ( % of migraineurs at grade iv) and a significant reduction of the midas scores at t follow-up visit (p< . ) were found. conclusions our data confirm that migraine represents the most fre- quent primary headache observed in ed and that it is an under-diag- nosed and under-treated pathology associated with a high level of dis- ability. in fact, the high percentage of “treatment naïve” patients may be the main factor responsible for the disability of this peculiar migraine population. the reduction of headache frequency after months of headache centre therapy together with the improvement in quality of life as observed in our migraine population support the importance of a strict collaboration between the hc and the ed in the diagnosis and therapy of primary headaches. “headache week”: a meeting between patients and experts v. raieli, f. brighina, g. calagna, m. calia, f. consolo, s. crinò, m. demma, d. ferrara, m. francolini, r. lupo, c. morreale, d. puma, d. ragusa, g. santangelo, f. serra, g.b. la pegna* sisc regional group, palermo, italy; *president, sisc regional section, caltanissetta, italy; e-mail vinzi.raielk@inwind.it objectives to better understand patients’ questions about their headache, we held free meetings in a headache centre for one week. methods in a headache centre, several pain experts were available to answer questions from patients about paediatric and adult headaches by phone, mail or direct contact. this “headache week” was publicized through journals and posters in hospitals and med- ical offices. results during the week people contacted us, by phone, by direct contact and by mail. thirty-three questions regarded pae- diatric headaches, were made by patients under years of age and by patients over years. one hundred and thirty-six were females and were males. in this group subjects had migraine, chronic daily headaches, unclassifiable headaches, and other primary headaches. the most surprising data were that % of the population, even though suffering from high frequency headaches for several years, had never visited a headache centre or specialist and had never followed a preventive therapy for their headache. the major question concerned where they could be visited. only % of the subjects had been just visited in a headache centre or by a neu- rologist or other pain specialist. the other most frequent questions regarded information about other headache centres, new preventive and symptomatic therapies and potential vascular risks factors. discussion these data suggest that our initiative to carry out a “headache week” has been surprisingly useful, not only to answer questions regarding doubts or curiosities by subjects who had only been visited by a pain specialist but also to identify the population of headache patients who had never gone to a specialist and who often relied on self-medication, risking pharmacological abuse of symptomatic drugs. the scientific data show that % to % of headache patients has not been visited by the doctor and that only % had gone to a pain specialist. for these reasons, similar initia- tives can probably help to direct these patients to a headache centre and to better inform the general physicians about the headache cen- tres and the usefulness of a correct symptomatic or prophylactic therapy for headaches. clinical aspects of headaches ii increased variants of the circle of willlis in migraineurs c. cavestro, l. richetta, m.r. l’episcopo, s. ros, s. duca, m. giraudo, p. ciravegna, g. asteggiano department of neurology, “s. lazzaro” hospital, asl , alba, italy; service of neuroradiology, clinic of the city of brà, brà, italy; e-mail: cicaves@tin.it in recent years, some authors have described an increased proportion of patent foramen ovale in migraineurs, suggesting the possibility of a dynamic mechanism in sustaining migraine. other authors have reported an increased number of lacunar lesions in some categories of migraineurs, without any reasonable source of the lesions them- selves. in consideration of this information, we studied over patients with different types of headaches. we recruited patients with headache and controls, recruited among patients who under- went mri for other reasons. among patients with headache, patients were migraineurs, had migraine plus another type of headache, and had a different type of headache. thirty ( %) of migraineurs had anatomical variants of the circle of willis; in this group, had ischaemic cerebral lesions, whereas only of were without variants. among the group of patients with both migraine and another type of headache, % had anatomical variants, whereas only % of patients with other types of headaches and % of con- trols showed anatomical variants. the significantly higher percentage of anatomical variants of the circle of willis in patients with migraine supports the hypothesis that vascular dynamic alterations are associ- ated with migraine; it may be either an epiphenomenon with possibly a gene-related linkage, or due to the presence of an anatomical arter- ial abnormality that could influence headache through vascular dynamic modifications. the role of neuroimaging in the evaluation of headache patients: implementation and valida- tion of the italian diagnostic guidelines m.p. prudenzano, m. massimo, a. pignatelli, l. merico, m. rossi, s. genco, p. lamberti, p. livrea headache disorders centre, neurological and psychiatric sciences department, university of bari, bari, italy; e-mail: m.p.pruden- zano@neurol.uniba.it introduction in the ad hoc committee of the italian headache society published the italian diagnostic guidelines for migraine and cluster headache [ ]. they were based on the diagnostic criteria of the international classification of headache disorders and provided addi- tional indications on when neuroimaging procedures are required to formulate a correct diagnosis and to exclude secondary headaches. the primary goal of this study was to implement the diagnostic guidelines for migraine and to validate them on headache patients referring to a tertiary headache centre. the secondary goal was to evaluate the fre- quency of white matter lesions whose association with migraine is still a controversial matter [ ]. subjects and methods all adult headache sufferers consecutively referred to the headache disorder centre, university of bari in a one- year period were enrolled. according to the italian diagnostic guide- lines, which were extended also to other types of headaches besides migraine, magnetic resonance imaging was recommended: (a) in the presence of focal signs at the neurological examination; (b) to patients without neurological signs but showing additional risk factors in their headache history (association with systemic and/or neurological symp- toms, changes in severity, frequency or clinical features of headache attacks, new onset of headache after the age of years, recent onset, progressive worsening course, headache worsening after valsalva manoeuvre, and headache not responding to adequate therapies). results specific lesions were found in . % of cases: (venous angioma . %, cerebellar tonsillar ectopy . %, meningioma . %, pineal gland cyst . %, silent stroke . %, aneurysm . %, and pitu- itary microadenoma . %). among aspecific lesions, white matter hyperintensities were observed in . % of cases. among extracranial lesions sinusitis was the most frequent ( . %). all patients with silent stroke were migraineurs. no difference was found in the occurrence of white matter lesions according to headache type, headache duration, attack frequency, or concomitant therapy, whereas a more elevated fre- quency was associated with older age, smoking and hypertension. discussion and conclusions our results showed that the italian diag- nostic guidelines are highly sensitive and furnish a correct diagnosis. the finding of specific lesions allows the physician to plan subsequent controls and therapies. these results confirmed that magnetic reso- nance imaging is not recommended routinely but only in those cases with additional risk factors for secondary headache. the association between silent stroke and migraine suggests that migraine might be a vascular risk factor. the results concerning white matter lesions did not support the hypothesis of a strong link with migraine so further studies are needed on this topic. references . ad hoc committee of the italian headache society ( ) diagnostic and therapeutic gguidelines for migraine and cluster headache. j headache pain : – . swartz rh, kern rz ( ) migraine is associated with magnetic resonance imaging white matter abnormalities: a meta-analysis. arch neurol ( ): – headache and epilepsy: diagnostic challenge and therapeutic opportunity m.p. prudenzano, a. la neve, t. francavilla, v. sinisi, a. de palo, p. lamberti, a. gallanti, a. cappellari, n. bresolin, c. gentili, m. guazzelli, s. gori , e. bonanni, c. frittelli, a. iudice, l. murri headache disorders centre, neurological and psychiatric sciences department, university of bari, bari, italy; neurologic clinic, university of milan, milan, italy; psychology clinic, university of pisa, pisa, italy; neurologic clinic, university of pisa, pisa, italy; e- mail: m.p.prudenzano@neurol.uniba.it introduction headache and epilepsy are chronic neurological disor- ders with recurrent attacks [ ]. both can include clinical features, such as: visual disturbances, changes in mood, behaviour, consciousness and focal sensory or motor symptoms/signs. sometimes the differential diagnosis may be difficult. in other cases the two disorders are associ- ated. the exact prevalence and nature of this comorbidity are not yet well known. in recent years antiepileptic therapy has been extended also to headache prophylaxis. this study was carried out with the aim of assessing the prevalence of headache in patients referring to tertiary centres for epilepsy care and of evaluating the influence of anticonvul- sant drugs on headache progression. subjects and methods this cross-sectional study was conducted in the neurologic clinics of bari, milan, pisa and in the psychology clinic of pisa. a broad sample of adult epileptic patients consecutive- ly referring to the centres was enrolled. subjects with mental retarda- tion, or any other psychical and/or medical condition that could limit their cognitive performance were excluded. a detailed medical history was collected. patients underwent physical and neurological examina- tions, and when necessary, appropriate diagnostic testing. all patients were asked the following question: “have you ever suffered from headache?” if the answer was “yes”, a specific headache questionnaire was administered. headache was diagnosed according to the criteria of ichd-ii [ ]. headache was considered as chronic when attack fre- quency was days or more a month for at least months. data were analysed by means of spss . for windows. results about % of patients complained of headache attacks related to seizures; in particular, % of headache attacks developed during a seizure, % of them were preictal and % were observed in the pos- tictal period, while for the most part attacks were migraine-like. headache and epilepsy were comorbid in % of patients. epilepsy followed by headache occurred in % of patients. headache onset fol- lowed by epilepsy onset was observed in % of patients. in the remaining % of cases the two disorders began at about the same time. the prevalence of migraine was about %. no chronic headache was observed in the sample. discussion and conclusions results confirm that headache and epilep- sy are strongly associated. neuronal hyperexcitability and low attack threshold might be involved in both disorders. in this sample, chronic headache prevalence was lower than in the general population [ ], sug- gesting a possible protective role of antiepileptic drugs not only toward epilepsy but also toward headache progression. references . bigal me, lipton rb, cohen j, silberstein sd ( ) epilepsy and migraine. epilepsy behav [suppl ]:s –s . headache classification subcommittee of the international headache society. ( ) the international classification of headache disorders. cephalalgia [suppl ]: – . silberstein sd ( ) tension-type and chronic daily headache. neurology ( ): – migraine with aura and ischaemic stroke f. mainardi, m.c. mantovan, a. campioni, l. semenzato, c. palestini, c. lisotto headache centre, neurologic division, ss. giovanni and paolo hospital, venice, italy; department of medicine, adria hospital, adria, italy; headache unit, san vito al tagliamento, italy; e-mail: fmainardi@iol.it migraine with aura is considered a risk factor for ischaemic stroke in young people. the relative risk increases in the presence of additional factors, such as smoking, oral contraceptive therapy, and alterations of coagulability, particularly activated protein c resistance and factor v mutation. a -year-old man was admitted to the emergency department because of the onset in the previous hours of a severe pul- sating headache accompanied by nausea, vomiting, photo- and phono- phobia. hemianoptic visual disturbances and a left hemisyndrome pre- ceded the headache phase. he previously suffered from sporadic hemi- plegic migraine, according to the ichd-ii criteria. the persistence of the neurological symptoms and the worsening of the headache, despite the abortive treatment with triptans, which usually resolved the crisis, led the patient to medical observation. the neurological examination confirmed the presence of a left hemisyndrome with a homonymous hemianopia; consequently, a direct brain ct scan was performed, which did not reveal any alteration. the presence of an ischaemic stroke in the region of the right middle cerebral artery was detected with a second brain ct scan, performed hours after onset of the symptoms. routine laboratory tests, auto-antibodies (including antiphospholipid antibodies), homocysteinemia, ecg, transthoracic and transaesophageal echocardiography, and doppler ultrasound of the supraortic and intracranial vessels resulted normal. an activated protein c resistance led to investigate the presence of a factor v mutation, which revealed a homozygous point mutation, g-a . in the follow- ing days, the neurological examination improved, and the patient was discharged with anticoagulant therapy. although several studies indi- cate a relationship between genetic prothrombotic abnormalities and migraine, this correlation is not demonstrated by definitive evidence. nevertheless, it is useful to perform a complete haemocoagulative screening in patients suffering from migraine with aura. furthermore, the persistence of aura symptoms in patients with a well-known diag- nosis of migraine with aura should be carefully investigated. migraine and multiple sclerosis: the role of brainstem demyelinating lesions in the causa- tion of headache l. locatelli, m. zorzon, a. granato, c. maggiore, a. bratina, a. bosco, g. relja department of clinical medicine and neurology, u.c.o. neurologic clinic, university of trieste, trieste, italy; e-mail: antonio_granato@ hotmail.com background few studies investigated the prevalence of migraine, diagnosed according to the diagnostic criteria of the international headache society (ichd-ii), in patients with multiple sclerosis (ms). in case-control studies, prevalence was significantly higher in ms patients than in controls and ranged from % to %. some studies have highlighted the role of brainstem grey matter dysfunction in gen- erating migraine attacks. in patients with ms, the brainstem is fre- quently affected by demyelinating lesions, which could interfere with brainstem antinociceptive functions. objective to study, by quantitative analysis of mr images, the exten- sion of demyelinating lesions in the brainstem of patients with ms (diagnosed according to mcdonald’s criteria) with or without migraine. patients and methods eighty-one patients ( f and m) with ms underwent a . tesla brain mri examination of the brain. axial images were obtained with mm slice thickness using pd/t weight- ed se sequences. t -lesion load (ll) was calculated by an investiga- tor blinded to patient’s clinical status using a highly reproducible, semiautomated local thresholding technique for lesion segmentation. migraine was diagnosed according to the ichd-ii. results fifteen of ( . %) ms patients with migraine compared with / ( . %) ms patients without migraine had demyelinating lesions in the brainstem (p< . ). the or for a ms patient with a demyelinating lesion in the brainstem suffering from migraine was . (c.i. % . - . ). brainstem mean t -ll did not differ in ms patients with or without migraine ( . ml vs. . ml, p=ns). no differences were found between ms patients with or without migraine when calculating the mean t -ll separately in the midbrain, pons, and medulla oblongata. there was no relationship between the predomi- nant side of migrainous headache and the demyelinating lesion side in the brainstem. conclusions ms patients with demyelinating lesions in the brainstem are at risk for migraine. the extension and the side of demyelinating lesions seem to have less impact. pharmacoepidemiology of drug use in headache patients: comparison between sufferers of med- ication-overuse headache and migraine a. ferrari, s. leone, a. bertolini, c.p.r. coccia, e. sternieri headache centre, division of toxicology and clinical pharmacology, university of modena and reggio emilia, modena, italy; e-mail: annaf@unimore.it introduction chronic headache patients often overuse symptomatic drugs while episodic headache patients usually take drugs in a very cautious way. it is unknown if the differences between the two groups of headache sufferers concern only the amount or also the type of drug used. objective our aim was to compare the pharmacological habit between medication-overuse headache (moh) and migraine patients. subjects and methods we compared all drugs taken by (a) moh patients (f/m= . ; mean age±sd: ± years), consecutively admitted to the in-patient ward of the headache centre of the university of modena and reggio emilia, and; (b) migraine patients (f/m= . ; mean age±sd: ± years) consecutively referred to the outpatient ward of the centre. data were collected by means of a standardized clinical chart and recorded in an appropriate database. the study was carried out between june and march . results there were large differences in the types of symptomatic med- ications used between moh and migraine patients. in particular, moh patients concomitantly took more than one type of symptomatic drug: triptans, . %; nsaids, %; association of indomethacin, prochlor- perazine and caffeine (ipc), . %; and weak opioids, %. migraine patients used: nsaids, %; triptans, %; ipc, %; and other anal- gesic combinations, . %. in both groups, the most used drugs were nimesulide and sumatriptan, respectively, among nsaids and triptans. fifty-eight percent of moh, and only % of migraine patients were following prophylactic treatments. more than % of moh patients were also using other medications: antihypertensive agents, . %; ben- zodiazepines, %; antidepressants, %; hormones, %; antilipemic agents, %; and antiplatelet agents, %. among migraine patients, % were also using other medications: hormones %; antihypertensive agents, %; antidepressants, %; and benzodiazepines, %. conclusions even if moh often evolves from migraine, our study indicates that the pharmacoepidemiology of drug use was different between the two headache forms: moh patients overused triptans more than nsaids and took multiple medications; migraine patients took mainly nsaids for acute treatment, did not use weak opioids, and took fewer other medications. clinical aspects of headaches iii measuring the disability in migraine c. lisotto, g. zanchin headache unit, san vito al tagliamento, italy; headache centre, department of neurosciences, university of padua, padua, italy; e-mail carlo.lisotto@ass .sanita.fvg.it disability has been defined by the world health organization (who) as “any restriction or lack of ability to perform an activity in the man- ner or within the range considered normal for a human being”. in , who published the annual world health report, using the methodolo- gy of the global burden of disease study. in this report, who identi- fied migraine among the top leading causes of years of life lived with disability (ylds) in all ages, ranking th in females and th in both sexes. disability refers to the impact of illness on the ability to work and function in various settings and roles. information on disability in migraine complements the diagnosis by helping the physician to assess the need for treatment. reduction in headache-related disability is one of the main goals of the us headache consortium guidelines, which recommend a stratified care approach based on the level of disability. to measure the impact of migraine, parameters must be defined that cap- ture the personal burden on the sufferer and the economic burden on society. disability in headache sufferers can be measured with a variety of generic and specific instruments. generic tools address a broad range of life aspects related to health. these instruments can be used for many diseases and allow for comparison with healthy controls and other dis- ease populations. however, the generic instruments are often too broad- based to be responsive to changes in a particular disorder. the specific tools address in-depth issues more focused on patients’ concerns and are more likely to be responsive to therapeutic interventions. the most commonly used generic instruments are the medical outcome study -item short form (sf- ) and the more recent versions, sf- and sf- . among the various specific instruments, the following tools have been most extensively studied and used: the henry ford headache disability inventory (hdi), the migraine-specific quality of life measure (msqol), the migraine-specific quality of life questionnaire (msq) and its reviewed new version (msq version . ), the migraine disability assessment (midas), also modified for chil- dren and adolescents (pedmidas), the headache needs assessment (hana), and the web-based headache impact test (hit) and its derived paper-based short form hit- . the use of impact instruments can improve communication between patients and physicians, aid in the assessment of migraine severity and in the prescription of an individu- alised treatment plan in concert with other clinical assessments, and in the monitoring of the response to therapy. comorbidity in migraineurs in comparison with patients affected by different types of headaches c. cavestro, m. de maestri, g. giordano, m.p. marino, v. iberti, a. barile, m. pompilio, g. rando, a. rosatello, g. asteggiano department of neurology, “s. lazzaro” hospital, asl , alba, italy; department of internal medicine, “s. lazzaro” hospital, asl , alba, italy; odontoiatric service, canale hospital, asl , canale, italy; department of orthopaedics, “s. lazzaro” hospital, asl , alba, italy; rehabilitation service, “s. lazzaro” hospital, asl , alba, italy; service of endocrinology, “s. lazzaro” hospital, asl , alba, italy; e-mail: cicaves@tin.it we evaluated consecutive patients referred to the headache service of our hospital, recording any diseases other than headache in order to identify any differences in prevalence of such pathological conditions that could be related to migraine. of our patients, ( f, m) were affected by migraine, ( f, m) by migraine plus another headache type, and ( f, m) by headache different from migraine. among the migraineurs, patients had no other patholo- gies, of whom only patient had a headache frequency of more than days per month, and had a headache frequency of days per month. among the patients with migraine and another headache type, only patient did not have any other disease, and only patients affected by another headache type did not have other diseases. different categories of diseases were evaluated in all groups (disorders of coagulation, orthopaedic, facial, cervical and spinal disorders, oph- thalmic and otorhinolaringoiatric, systemic diseases, psychiatric disor- ders, epilepsy, pathologies that provoke brain lesions, metabolic and endocrinologic diseases, and others). comorbidity did not differ in the three patient groups, except for the absence of additional pathologies in patients with migraine with low frequency of headache. this suggests that migraine is primarily an episodic disease, that is, its worsening should be correlated with the common causes of other headaches. the influence of psychiatric comorbidity on migraine-related disability in a clinical popula- tion of patients with migraine without aura c. di lorenzo, f. cesarino, j. faroni, p. rossi headache clinic, ini grottaferrata (rome), italy; e-mail: paolo.rossi @aliceposta.it background previous studies have revealed that migraine-related dis- ability, as measured by the midas questionnaire, does not reflect only migraine intensity and frequency. factors other than migraine severity may play a role in determining individual variation in disability levels. objective to define predictors of migraine-related disability in patients referred to a specialty headache clinic focusing on psychiatric comorbidity and personality characteristics. results two hundred and thirty-three consecutive patients, suffering from migraine without aura, were evaluated using midas, bdi for depression symptoms, stai – t and stas – t for trait anxiety and anger, tas – for alexithymia and scid-i for the categorical diag- nosis of axis i psychiatric disorders. multiple regression analysis showed that disability was higher in those patients experiencing a high- er number of headache days per month, more severe pain intensity, more severe depressive symptoms, and more prolonged migraine attacks. other independent predictors of the total midas score were female gender and having a full-time employment. the model was highly significant (f= . , p< . ) and explained % of the observed variance (adjusted r ). conclusions our findings demonstrate that, with the exception of depression symptoms, psychiatric comorbidity has a limited influence in modulating the impact on everyday functioning. accompanying symptoms and psychiatric comorbidity in migraine and tension-type headache patients f. mongini, e. rota, a. deregibus, g. migliaretti, t. mongini, l. ferrero, a. novello unit of headache-facial pain, department of clinical patho- physiology, university of turin, turin, italy; department of public health and microbiology, university of turin, turin, italy; e-mail: franco.mongini@unito.it introduction it is well known that headache is frequently accompa- nied by physical and psychiatric complaints. the association between headache and psychiatric disorders has been extensively explored, the most common being anxiety and depression, as demonstrated by epi- demiological and prospective studies. the aim of this study was to assess in patients with migraine and both episodic and chronic tension- type headache the prevalence of accompanying symptoms and their relationship with depression and anxiety. patients and methods a psychological assessment (axis i, dsm-iv) was performed and accompanying symptoms were investigated in patients with: episodic migraine (em, n= ), chronic migraine (cm, n= ), episodic tension-type headache (etth, n= ) and chronic tension-type headache (ctth, n= ). the following issues were analysed: differences in number of symptoms among the groups and in patients with and without psychiatric comorbidity (respectively, by means of the kruskal-wallis test and the mann-whitney rank sum test); relationship between symptoms and headache type (by means of a discriminant analysis and a logistic regression model); and asso- ciation between symptoms and psychiatric comorbidity (by means of the fisher exact test). results among the groups, the mean number of symptoms did not dif- fer significantly, but it was significantly higher in patients with psychi- atric comorbidity. the following associations were found: tinnitus, cramps with em; back pain with etth; vaginism/frigidity, circulato- ry disorders and nail/hair fragility with cm; and oral parafunctions with ctth. psychiatric comorbidity was significantly associated with most of the symptoms, especially in em. discussion our results confirm that in a large and homogeneous cohort of patients with migraine and both episodic and chronic tension-type headache, a remarkable number of accompanying symptoms, most of them psychosomatic in nature, are frequently reported. the finding of a significant association between depression and/or anxiety and most of the symptoms clearly suggests that, in migraine patients, psychiatric comor- bidity may consistently affect the burden of accompanying symptoms. conclusions in conclusion, depression and anxiety in headache patients and particularly in em, play a significant role in the expression of physical complaints, whose increased burden could represent a fac- tor by which psychiatric disorders may influence the migraine history, thus facilitating its chronicity. this is also relevant for correctly plan- ning treatment strategies. cognitive functioning in side-locked and side- shifting migraine patients d. cologno, m.g. buzzi g.a. carlesimo, p. cicinelli, a. costa, l. fadda, b. marconi, s. pero, c. caltagirone i.r.c.c.s. s. lucia foundation, rome, italy; e-mail: danielacologno@ virgilio.it introduction one of the main features of migraine is represented by the unilateral location of pain during attacks. nevertheless, the data regarding the constancy and the frequency of the unilateral location of pain suggest that only % of patients report unilateral pain persisting for the whole attack, thus, a side-locked location is infrequent. there is little evidence regarding cognitive functioning in migraine patients. namely, possible differences in the cognitive profile between migraineurs with right and left side-locked pain have rarely been explored. the aim of the present study was to investigate the relation- ship between the unilateral pain (with or without side-shifting) and neuropsychological assessment in patients with migraine. patients and methods we recruited patients ( females and males) (mean age . years, range – ; mean disease duration . years, range – ) affected by migraine without aura (mo) (n= ), migraine with aura (ma) (n= ), or both ma and mo (n= ) with uni- lateral pain during attacks. patients were not receiving preventive treat- ment and had a monthly frequency of – attacks over the -month period preceding the evaluation. neuropsychological assessment was obtained using standard tests and a computerized task to investigate verbal and visual-spatial short-term and long-term memory, executive functions, visual-spatial and language abilities, abstract reasoning and attention processes. patients were divided into groups according to the location of pain: right side-locked patients (n= ), left side-locked patients (n= ), and right-left side-shifting patients (n= ). results no statistically significant differences were found in neu- ropsychological test scores among groups (one-way anova; all p> . ). moreover, no correlations were found between cognitive tasks and any of the clinical features (i.e. age at onset of migraine, mean disease duration, and mean attack frequency) (p> . ). conclusions in conclusion, our preliminary data suggest that neu- ropsychological performances in migraine patients seem to be not related to the side of pain, although strictly unilateral. diagnostic criteria of tension-type headache a. forabosco, f. vecci, t. grandi, s. superbi university of modena and reggio emilia, school of dentistry, modena, italy; e-mail: forabosco.andrea@unimo.it introduction the ”tension-type headache” is one of the most common forms of headache: it has a lifetime prevalence of % in males and % in females [ ]. at present, the treatment for patients who suffer from these disorders has increasingly required the need of a collabora- tive team approach. the differential diagnosis is based on clinical cri- teria regarding quality, localisation, and pain duration as well as lack of autonomic symptoms. materials and methods according to the international classification of headache disorders, (ichd-ii), “tension headache” belongs to the “primary headache” forms and is distinguished according to the fre- quency of attacks in “episodic sporadic headache” (estth); “episod- ic frequent” (eftth) or “chronic” (ctth). a common characteristic of the three forms is the frequent connection with tension and/or pain of the cranio-cervico-mandibular muscles, which is often related to hypertrophy, dysfunctions, dental abrasion, mandibular movement lim- itation or dental malocclusion [ ]. it is very important to identify and correctly diagnose possible dental elements involved in the field of headache disorders in order to begin correct therapy. to attain this goal, our team prepared a specific protocol including medical history, clini- cal and instrumental examinations. all the patients underwent clinical examination in two phases by the same examiner: - extra-oral examination included recordings of pain in the jaw, temples, face, preauricular area or inside the ear, at rest or during activity, combined with tenderness on palpation of the masseter, anterior temporalis, sternocleidomastoid, and anterior digastric muscles. - intra-oral examination focused on health and dental failure, dental mobility, occlusion according to angle’s classification, transversal, vertical or anteroposterior malocclusion, even with interference or alteration of mandibular movement. physical tests were performed, such as the “provocation test”, the “end-feel test”, or the “dynamic or static test”, which can indicate dif- ferences between muscle or joint disorders [ ]. to formulate a correct diagnosis, other helpful supplementary investigations should be used, such as radiological examination (opt, condylar radiography, magnet- ic resonance imaging of tmj, ct) and instrumental examinations (superficial electromyography, cinematic analysis and t-scan). electromyography is used as a method of investigating muscle activi- ty at rest and during function. discussion and conclusions stomatognathic system disorders may be an important factor in the aetiology or symptomatology of tension-type headache, which is often connected to psychological or pathophysio- logical factors of the patients, encouraging the resolution or the dura- tion of the disorder. it is evident how the cooperation between special- ists of different medical fields is essential for establishing an efficient therapy and a satisfactory remission of the disorder’s symptomatology. references . mongini f ( ) le cefalee e il dolore facciale. unione tipografico, editrice torinese, torino . forabosco a, grippo a, superbi s et al ( ) dossier gnatologia: pazienti con disfunzione dei muscoli masticatori. elettromiografia di superficie. dental cadmos : – . palla s ( ) mioartropatie del sistema masticatorio e dolori oro- facciali. rc libri, milano case reports i did michail bulgakov suffer from migraine? f. mainardi, f. maggioni, f. dainese, c. lisotto, g. zanchin headache centre, neurologic division, hospital of venice, venice, italy; headache centre, department of neurosciences, university of padua, padua, italy; headache unit, san vito al tagliamento, italy; e-mail: fmainardi@iol.it michail bulgakov ( – ) is considered one of the major russian contemporary authors. he graduated in medicine but left the medical profession three years later, after the publication of his first work in a local journal. his masterpiece, “the master and margarita”, published posthumously, is structured in different levels, apparently disconnected, but flowing into a unique design, that sees the eternal opposition between good and evil. part of the tale takes place in the palace of the roman governor of palestine, pontius pilate; despite a terrible headache, he has to judge a young jew, jeshua hanozri, condemned to death by the synedrion. the governor is aware of the beginning of his headache, because it starts with an intolerance to a particular odour, the smell of rose oil. furthermore, it is possible to note the typical symptoms of the migraine attack from the behaviour of the governor during the trial: photophobia, phono- phobia, aggravation with routine physical activity, instinctive manoeuvres to alleviate the pain intensity, and effort to maintain an acceptable concentration. it is possible that bulgakov, during the years he worked as a physician, directly saw a migraine attack, and that the description of pontius pilate’s migraine is a consequence of his medical experience. however, some specifics should be given in such detailed manner only by a migraineur: the osmophobia (not yet inserted in the present ihs diagnostic criteria), the instinctive manoeuvres, and the incapacitating intensity of pain. the rich details that bulgakov includes in the description of pilate’s migraine, besides being an elegant literary description of this ailment, should be considered as evidence that he suffered from migraine. clinical outcome of hypnic headache c. lisotto, f. mainardi, f. maggioni, g. zanchin headache unit, san vito al tagliamento, italy; headache centre, neurologic division, hospital of venice, venice, italy; headache centre, department of neurosciences, university of padua, padua, italy; e-mail: carlo.lisotto@ass .sanita.fvg.it introduction hypnic headache (hh) is a primary headache, which occurs exclusively during sleep. at the time of this writing, patients with this disorder have been described. the natural history of hh is not well known. it is assumed that it tends to be chronic unremitting, but only patients have been observed for at least years. to better com- prehend the outcome of hh, we have prospectively followed patients for a period ranging from to years. results we diagnosed patients ( females and male) with hh. case : -year-old female, the headache started in and was chronic from the onset. she died in , due to cerebral haemorrhage. case : -year-old male with a previous history of migraine, the nocturnal headaches began in and had an episodic pattern, with two differ- ent active periods until now, each period lasting about months. case : -year-old female with a long history of migraine, the nocturnal attacks started in and occurred in bouts of – months with inter- vening spontaneous breaks of – months. case : -year-old female, the headache began in and was chronic from the onset. case : -year-old female with previous migraine headaches, the attacks start- ed in and remained chronic on a nightly basis over the following years. case : -year-old female, affected by chronic migraine. in , she had a prolonged period lasting months of nocturnal headaches fulfilling the international headache society (ihs) criteria for hh. during the active period of hh, she did not report migraine attacks, which recurred with the previous usual characteristics when the hh spontaneously ceased. case : -year-old female, suffering from chronic migraine. in , she had a protracted period of exclu- sively nocturnal headaches, meeting the ihs criteria for hh, with con- current disappearance of migraine attacks. this period lasted for months, then the hh attacks spontaneously disappeared and the migraine headaches relapsed with the same previous clinical features. discussion four of the seven patients with hh showed an episodic pattern, with active periods followed by complete remissions; two patients had only a single bout until now. in patients, hh was strict- ly associated with migraine; in cases, there was a history of previous migraine headaches, and in the remaining two patients, a bout of hh intervened in the course of chronic migraine, with concurrent, tempo- rary, complete remission of migraine attacks. migralepsy: a case report f. maggioni, c. perin, e. mampreso, f. dainese, c. lisotto, g. zanchin headache centre, department of neurosciences, university of padua, padua, italy; headache unit, san vito al tagliamento, italy; e-mail: ferdinando.maggioni@unipd.it migraine and epilepsy are two paroxysmal disorders with epidemio- logical and clinical comorbidity. the mechanisms underlying this association are not clear; it is hypothesized that the occipital cortex in migraineurs has a low excitation threshold, which may trigger the seizures. in addition, during migraine with aura, there are changes in cerebral perfusion that could trigger subsequent seizures. whereas migraine-type headache is not uncommon following a seizure, a seizure only rarely hits during or after a migraine attack. this phe- nomenon, defined as “migralepsy”, has been described in subjects affected by migraine with aura, and the diagnostic criteria have been incorporated in the ichd-ii . we report a -year-old female patient with congenital hypoxic encephalopathy and repeated episodes of migraine with aura with associated seizures (migralep- sy). the patient was the first child, born prematurely ( th month) for dystocia by forceps delivery. the first generalized convulsive seizure occurred at -years of age. psycho-physical development was normal, she is married with one child, and works at a news stand. she underwent antiepileptic therapy with phenobarbital for occasional seizures until age with no additional seizures. thereafter, at age , she experienced a visual deficit in the left hemifield (“i saw a top spinning”), which resolved in about min- utes and was followed by a diffuse headache, pulsating, particularly severe, associated with nausea and vomiting, and exacerbated by physical activity. after about an hour, the patient suddenly lost con- sciousness and fell to the ground, with clonic spasms involving all limbs. the patient was brought to the emergency department where another generalized tonic-clonic seizure occurred. routine laborato- ry testing, ecg, and chest x-rays were all normal. brain-mri revealed a picture compatible with perinatal hypoxic damage. the eeg showed modest signs of irritative alterations in the right tem- poral lobe. valproate mg/day was prescribed. since then, she has presented similar episodes of migraine with aura, followed by secondarily generalized seizures beginning as focal motor manifes- tations on the left side. migralepsy disappeared (follow-up at months) by increasing valproate to mg/day and adding leve- tiracetam mg/day. migralepsy is a rare phenomenon. two cases have been described with reversible mri abnormalities during the crisis, which suggests an inherent overlap in the underlying patho- physiology of these events. amaurosis and headache as the first clinical evidence of multiple sclerosis f. consolo, g. santangelo, e. trapolino, d. bona, d. buffa, f. vanadia, v. raieli division of child neuropsychiatry, “di cristina” hospital, palermo, italy; division of child neuropsychiatry, “ingrassia” hospital, palermo, italy; e-mail: flaviaconsolo@inwind.it a -year-old patient presenting with amaurosis and headache was shown by neuroimaging to have demyelinating lesions in the brain. this case offers the opportunity to consider rare causes of secondary headache presenting only with clinical features of migraine with aura. a case of headache that has to be defined v. firetto, r. fabbracci, m. falzarano, c.a. caputi pain and palliative care unit, department of medical and surgical neurological sciences, riuniti university hospital, ancona, italy; e-mail: med.dolore@ao-umbertoprimo.marche.it introduction precise official indications exist to aid us in headache diagnosis. despite the existence of the ihs classification, several cases often cannot be classified into precise nosological entities, either due to the variability of signs and symptoms or to therapeutic efficacy. case report we describe the case of an -year-old woman, who suf- fered from an intolerable headache, which was located in the left supraorbital region. during months of observation, its location remained constant, but its characteristics and associated signs instead changed. the onset was unexpected and coincided with the position- ing of a dental prosthesis in the left upper dental arch. pain was pre- ceded by cutaneous reddening, without pruritus, in the left orbital area accompanied by prominent lacrimation of the ipsilateral eye. the prickly and stabbing pain lasted about or minutes every day; the attacks occurred, at a set time ( and pm), with a frequency of to per day. after a few days of medical therapy (amitriptyline), the frequency and form of the crises changed: a -hour persistent, stab- bing and burning pain alternated with transitory crises lasting min- utes without autonomic features. after medical therapy with amitriptyline had been suspended for excessive sleepiness, a week of well-being followed; afterwards, crises of lancinating pain, lasting minutes, occurred days apart and were treated with indomethacin, prochlorperazine, and caffeine. clinically, we noticed an ache at the epicranial emergence points of the unilateral trigeminal nerves. the patient was given a series of anaesthetic blocks of the epi- cranial nerves, which produced at first, the appearance of abortive cri- sis, followed by complete and persistent remission. conclusions this case is a fine example of changeable characteris- tics and various coexisting manifestations, which prevent us from reaching a precise diagnosis (according to the present classifica- tion). generically, we can consider this condition a cephalalgic form, denominated short-lasting, unilateral, neuralgiform headache attacks with conjunctival injection and tearing (sunct) with pain length and autonomic features. however, current indications regard the response to indomethacin as a fundamental feature in the dif- ferential diagnosis with chronic paroxysmal emicrania. examining our case further, we observe that some characteristics (periodic crises during the day, fixed-sided distribution and stabbing-type pain) are pathognomic elements of cluster headache. we cannot identify an exact form, or even the existence of concomitant forms, because of the various and changeable aspects which coexist in this case. this is a further confirmation of a growing doubt: headaches represent a world that is yet to be defined. thus, indications used to determine diagnoses are not realistic representations, apart from a few exceptions. new daily persistent headache and primary stabbing headache: a case report f. mainardi, f. paladin, c. palestini, g. zanchin headache centre, neurologic division, hospital of venice, venice, italy; headache centre, department of neurosciences, university of padua, padua, italy; e-mail: fmainardi@iol.it new daily persistent headache (ndph) is a new entity, included in the revised international classification of headache disorders (ichd-ii) among other primary headaches (chapter ). the main feature of this form of headache concerns its temporal pattern, which is chronic from the onset. data regarding epidemiology, pathophys- iology, and treatment of ndph available in the literature are quite poor. primary stabbing headache (psh) is a well-known form of headache, codified in chapter at the first diagnostic level, fre- quently experienced by migraine ( %) or cluster headache ( %) patients. we present the case of a -year-old woman who came to our attention complaining for four months of a dull, mild-intensity, diffuse headache without any accompanied signs or symptoms, and not exacerbated by physical activity. she referred with great preci- sion the day of onset of her headache. from the beginning, the headache presented daily and was responsive to administration of simple analgesics. nevertheless, the patient rarely took drugs for treating her headache, as it was not disabling. furthermore, she referred the contemporary onset of head pain occurring as a series of stabs, in the temple and parietal areas with an alternation of side, lasting less than three seconds, recurring – times a day, and not accompanied by any other symptom or sign; the frequency of this pain was not regular. general and neurological examinations were normal. a brain mri was performed that did not show any signifi- cant alteration. as a preventative treatment, she was prescribed amitriptyline mg/day with a gradual, net improvement of headache frequency. to our knowledge, this is the first case of an association between ndph and psh, both forms responding to pre- ventative treatment with low dose amitriptyline. case reports ii thunderclap headache by spontanous intracra- nial hypotension e. ferrante, a. savino neurosciences and emergency room department, niguarda cà granda hospital, milan, italy; e-mail: enricoferrante@libero.it objective to demonstrate that thunderclap headache (th) may be the initial manifestation of spontaneous intracranial hypotension (sih) caused by a csf leak [ ]. background an excruciating headache of instantaneous onset is known as th. a subarachnoid haemorrhage is the prototypical cause, but other serious disorders may also present with th, including cere- bral venous sinus thrombosis, carotid artery dissection, and pituitary apoplexy. we report a group of patients with th as the initial manifes- tation of sih caused by csf leak. design/methods we evaluated patients with sih between and . four of them ( %; females and male, mean age years, range to ) initially experienced an excruciating headache of instantaneous onset. one patient was affected by marfan’s syndrome. results excruciating pain lasted from seconds to a few minutes. the pain was described as head swelling or like a hard blow to the head, followed by gravative occipital-nuchal and frontal orthostatic headache. mild neck stiffness was present in patient. patients were studied with ct, cerebral angiography ( patient), and mri angiogra- phy ( patient), all of which were unremarkable. the patients were also examined with lumbar puncture ( patients), brain gadolinium mri, spinal mri and mri myelography ( patients), ct myelogram ( patient), and radioisotope cisternography ( patient). csf pressure was low. brain mri showed diffuse pachymeningeal enhancement in all patients. csf leakage was demonstrated gadolinium in only patient at the cervical level. three patients received supportive measures only (bed rest, analgesics, and hydration). the patient with cervical csf leak underwent epidural blood patch. conclusions we suggest that sih should be included in the differ- ential diagnosis of thunderclap headache even when meningism is present. reference . ferrante e, savino a, sances g, nappi g ( ) spontaneous intracranial hypotension syndrome: report of twelve cases. headache : – a case of chronic paroxysmal hemicrania wors- ened by abnormalities of static cervical load g. capo headache centre, neurology unit, “san giovanni di dio and ruggi d’aragona” hospital, salerno, italy; e-mail: afep@libero.it we report the case of a then -year-old menopausal woman, who began to complain of mild, tolerable pain at the temple and in the left orbital and periorbital region, lasting – minutes and occurring – times a day. when she was -years-old, there was an intensification of the attacks with symptoms of conjunctival injection, lacrimation and ipsilateral rhinorrhoea, although the number and duration of the attacks did not change. at age , she underwent a surgical operation to cor- rect an s-shaped scoliosis with application of a support bar along vertebral (t to l ). two months before the operation, while she was wearing a trunk plaster cast, she noticed that the occipital region ached during the attacks. after the operation, the plaster cast was positioned not at the base of the neck but at the base of the head. immediately after removal of the plaster cast, the attacks got remarkably worse; using a scale from to , pain intensity was , lasting always - minutes. the autonomic phenomena were more remarkable, with the number of attacks once every hours during daytime, and once every hours at night ( – a day). nsaids, gabapentin, and cortisone infiltrations had no effect. when she was -years-old, she was visited at our headache centre. the neurological examination was unremarkable with few alterations; brain ct and blood tests were not relevant; the diag- nosis was chronic paroxysmal hemicrania [ ]. she was prescribed indomethacin mg/day and for the first time in years experienced tangible improvements, with a reduction in the number of attacks to – /day, mitigation of the autonomic phenomena, and reduction in the intensity of pain from to – . during the following years, she con- tinued to use indomethacin at the highest dosage of mg/day with positive effects. the relevant elements in this case are: . pain was extended to the cervical area when she wore a plaster cast before the operation; . lack of homogeneous distribution of attacks during daytime and nighttime [ ]; . considerable aggravation after the operation on the spinal column and after removal of the plaster cast probably in relation to alter- ations of the static cervical load. references . antonaci f, sjaastad o ( ) chronic paroxysmal hemicrania (cph): a review of the clinical manifestations. headache : – . pareja ja ( ) chronic paroxysmal hemicrania (cph): dissocia- tion of the pain and autonomic features. headache : – migraine secondary to superior oblique myokymia responsive to gabapentin: a case report f. maggioni, f. dainese, a. campagnaro, f. mainardi, s. ruffatti, g. zanchin headache centre, department of neurosciences, university of padua, padua, italy; headache centre, neurologic division, hospital of venice, venice, italy; e-mail: ferdinando.maggioni@unipd.it a case of migraine secondary to superior oblique myokymia (som) is reported. som is characterized by intermittent, small-amplitude, monocular, paroxysmal, high-frequency oscillations. these oscillations are mainly torsional in the primary gaze position and in abduction and evoke oscillopsia during paroxysms. the pathophysiology of this con- dition is not clear; often the patients are otherwise healthy, sometimes vascular compression of the ivth cranial nerve may be responsible, and rarely there are other neurologic diseases. a -year-old male with a negative clinical history, reported that four years ago he started experi- encing a “tremor” of the left eye. the duration of the initial symptom was to minutes, with periods of spontaneous remission during the first years from onset; subsequently, the attacks occurred almost daily. the “tremor” was followed by a pulsating headache, which spread from the back of the neck to one-half of the head, almost always on the left side. the intensity was moderate-severe and receded after taking parac- etamol or nimesulide orally. the frequency was about – episodes per week and was triggered mainly in those situations in which he was forced to concentrate. the headache never occurred during the night; it was associated with phonophobia, photophobia, osmophobia, and if of severe intensity, also with nausea without vomiting. the attack lasted a few hours. the eye examination was negative. the condition was so disabling that the patient interrupted his studies. during the years he underwent routine blood tests, ecg, eeg, vep and baers, chest x- rays, ct of the paranasal sinuses and orbits, brain mri with gadolini- um and angio-ct, all with negative results. the hess-lancaster test showed in the left eye hyperfunction of the superior oblique muscle compatible with the diagnosis of som. treatment with baclofen mg/day, levetiracetam mg/day, bromazepam mg/day, and carba- mazepine mg/day for at least months was unsuccessful; gabapentin was then started and progressively increased to mg/day. once this dosage was reached the myokymia receded, and the patient had no other migraine attacks. follow-up visits at , , and months were negative for myokymia and headache. the correlation between the two pathologies is substantiated by the clinical trend of the disorder and by the resolution of the attacks with an effective therapy. this case calls attention to the correlation between migraine and som and pro- poses gabapentin for treatment of this condition. clinical and radiological findings in a case of symptomatic cluster headache a. palmieri, f. mainardi, g. zanchin headache unit, hospital of san donà di piave, italy; headache centre, ss giovanni and paolo hospital, venice, italy; headache centre, department of neurosciences, university of padua, padua, italy; e-mail: apalmieri @virgilio.it introduction cluster headache (ch) is a primary disorder, defined by the international headache society (ihs) classification as a severe uni- lateral pain lasting – minutes if untreated and associated with ipsilateral autonomic dysfunction and/or agitation [ ]. in recent years, several cases of cluster-like syndromes associated with intracranial pathologies have been described, usually with atypical manifestations [ ]. we report a case of cluster-like headache completely fulfilling ihs diagnostic criteria at the time of presentation, with neuroimaging evi- dence of an organic brain lesion. case history a -year-old woman presented with a -week history of paroxysmal headaches occurring every night at the same hour (about : am) and lasting to minutes. the pain was severe or excru- ciatingly severe, strictly localised in the left temporal region, and accompanied by ipsilateral lacrimation, conjunctival injection, rhinor- rhoea, and occasionally, ptosis. the initial physical examination dis- closed exclusively a mild left eyelid ptosis. the initial laboratory para- meters and ct scan with contrast enhancement were normal. the patient was administered prednisone mg daily, with rapid and com- plete improvement. two weeks later, she reported intermittent diplop- ia and the ptosis worsened. furthermore, a few days earlier the patient had begun suffering from low back pain. a brain mri showed an iso/hyperintense area in the anterior aspect of the left cavernous sinus, significantly enhanced by contrast material, consistent with a possible metastatic lesion. in a few days, the ptosis became complete and low back pain worsened; the patient was subsequently admitted to the hos- pital. the spinal x-ray and total-body ct scan disclosed the presence of diffuse bone and liver metastases. a ct-guided liver biopsy was per- formed and the histological examination revealed metastasis from an undifferentiated carcinoma of unknown origin. the patient died days after onset of the symptoms. an autopsy was not performed. discussion increasing evidence indicates that pain and autonomic symptoms typical of ch result from activation of the trigeminal vas- cular and cranial parasympathetic pathways. the circadian rhythmici- ty of ch is thought to result from hypothalamic dysfunction, with sec- ondary involvement of the trigeminal autonomic pathways, as demon- strated by pet studies [ ]. our case indicates that an organic lesion in the anterior aspect of the cavernous sinus presumably involving the first division of the trigeminal nerve could have triggered the trigemi- nal autonomic hypothalamic circuitry. ch is a well-defined primary headache syndrome with a peculiar clinical picture that allows a rela- tively easy diagnosis. nevertheless, a cluster-like syndrome can be the consequence of a structural brain injury involving primarily the cav- ernous sinus and the trigeminal autonomic complex. the presence of even minimal unusual aspects must prompt the clinician to seek a sec- ondary cause of ch. references . headache classification subcommittee of the international headache society ( ) the international classification of headache disorders, nd edn. cephalalgia [suppl ]: – . mainardi f, dainese f, maggioni f et al ( ) cluster-like headache: an overview. cephalalgia : . may a, bahra a, buchel c et al ( ) hypothalamic activation in cluster headache attacks. lancet : – familial trigeminal neuralgia: case report v. firetto, r. fabbracci, m. falzarano, c.a. caputi pain and palliative care unit, department of medical and surgical neurological sciences, riuniti university hospital, ancona, italy; e-mail: med.dolore@ao-umbertoprimo.marche.it introduction only cases of familial trigeminal neuralgia have been described in the literature, frequently in association with glossopha- ryngeal neuralgia, charcot-marie-tooth neuropathy, or hypertension and brachydactylia. a mechanism of autosomal dominant transmission is assumed whose relevance still remains uncertain. case report we describe the case of a -year-old man. twenty-five years ago, he suffered from paroxysmal crises of severe, burning, lan- cinating pain in the right v and v divisions of the trigeminal nerve, associated with trigger points and accompanied by lacrimation. the pain was provoked by mastication and speech. the patient controlled the symptomatology by means of medical therapy (carbamazepine), progressively increasing the dosage because of its worsening, with no results as yet. after diagnostic examinations excluded a secondary cause, we decided at first to continue the medical therapy (carba- mazepine+gabapentin), which initially resulted in a partial resolution of the crises in the territory of the first trigeminal branch. subsequently, we decided to subject the patient to radiofrequency coagulation of the gasser ganglion, which had a positive outcome. during the taking of the patient’s history, we also found the presence of trigeminal neural- gia in the other two brothers. one of his brothers, -years-old, also had his first attack when he was approximately -years-old, and jolts always interested the same territory of distribution (right v and v divisions); he underwent alcohol block of the gasser ganglion years ago, with only months of complete anaesthesia. currently, he is in pharmacological therapy (carbamazepine) with good control of the symptomatology. the other brother, -years-old, had the first attack only years ago, in the same territory of distribution of the trigeminal nerve (right v and v divisions). pharmacological therapy (gabapentin) manages to control the symptomatology. the interesting feature is that -years ago, he was diagnosed with a form of multiple sclerosis, which is recognized to be one of the causes of secondary trigeminal neuralgia. conclusions we believe that the clinical history of the first two broth- ers can be considered an example of rare familial trigeminal neuralgia; conversely, the third case has to be included in a secondary form of trigeminal neuralgia (connected with multiple sclerosis). however, we emphasize that multiple sclerosis is a genetic disease. in our opinion, this case is interesting as it can confirm a pathogenetic hypothesis of familial trigeminal neuralgia (autosomal dominant) and, moreover, it suggests the necessity of further studies on penetrance and genetic localization, in order to understand what factors determine predisposi- tion to the development of cranial neuralgias among the same familial nucleus, without stopping at the appeared coincidence of two familial forms and a secondary one among three brothers. unusual headache: the onset symptom of one case of spontaneous spinal epidural hematoma a. giorgetti, m. conti neurology unit, legnano civil hospital, legnano, italy; neurosurgery unit, legnano civil hospital, legnano, italy; e-mail: giorgettiandrea@aliceposta.it spontaneous spinal epidural hematoma (sseh) is a rare clinical entity [ ] and represents a neurosurgical emergency requiring urgent investi- gation and prompt intervention. we describe one case of sseh admit- ted to our department: a -year-old woman presented with an intense and incapacitating headache resembling the one attributed to subarach- noid haemorrhage immediately followed by sensory and motor dys- function. magnetic resonance imaging (mri) of the cervical spine revealed a c -c dorsally placed extradural lesion causing significant compression on the thecal sac. a partial c -c and complete c hemi- laminectomy on the left side was performed. no abnormal vessels were noted during surgery. the patient made an almost complete recovery of the deficits within a week. although our case was initially suspected as cerebral stroke, a mri of the cervical spine was performed on the spine and spinal cord in the axial and sagittal sections. sseh should be sus- pected in the differential diagnosis of sudden, intense headache and neck pain with radicular radiation, accompanied by variable neurolog- ical deficits, and when confirmed by mri, emergent surgical decom- pression should be performed. early diagnosis and immediate treat- ment are mandatory to obtain good prognosis for patients with sseh [ ]. in most cases, such as ours, emergent surgical treatment leads to complete resolution of the symptoms. references . ananthababu p, anbuselvam m, radhakrishnan m ( ) spontaneous spinal epidural haematoma: report of two cases and review of the literature. j clin neurosci ( ) – . torres a, acebes jj, cabiol j et al ( ) spinal epidural hematomas. prognostic factors in a series of cases and a propos- al for management. neurochirurgia (astur) ( ): – headache in childhood and adolescence i primary headache among adolescents: clinical characteristics and psychosocial correlates f. pistoia, t. russo, s. sacco, a. carolei, c. marini department of neurology, university of l’aquila, l’aquila, italy; e-mail: marini@cc.univaq.it objective headache is a common problem among children in primary school. we evaluated the prevalence of headache subtypes in adoles- cents, aged to years, in primary school, and their relationship with lifestyle and psychological aspects. subjects and methods the study population was screened with a mul- tistage questionnaire between may and june , in primary schools of l’aquila. data were collected by means of a screening question- naire, consisting of items, administered to all students; a clinical interview, based on questions; and the migraine disability assessment scale (midas), administered to all headache sufferers. headache was diagnosed according to the diagnostic criteria of the international headache society, nd edition. students without headache were used as controls. results among a total of students examined, ( . %; % ci . – . ) reported recurrent headache episodes ( men and women, mean age ± . years). migraine without aura (ihs . ) was the most frequent diagnosis ( %), followed by probable migraine with or without aura (ihs . ) ( . %), frequent episodic tension-type headache (ihs . ) ( . %), infrequent episodic tension-type headache (ihs . ) ( . %), chronic tension-type headache (ihs . ) ( . %), migraine with aura (ihs . ) ( . %), probable tension-type headache (ihs . ) ( . %), and unspecified headache (ihs . ) ( . %). emotional disorders were more frequently reported by headache sufferers compared with control subjects: anxiety feelings were mostly associated with tension-type headache (or= . ; % ci . – . ), whereas mood disorders were mainly observed among patients with migraine (or= . ; % ci . – . ). insomnia was more frequent in subjects with migraine (or= . ; % ci . – . ). a trend towards an increased time spent watching tv was found in patients with tension-type headache (or= . ; % ci . – . ). conclusions headache is frequent among adolescents and is mainly related to psychological comorbidity and lifestyle. assessing headache among adolescents as early as possible is essential in order to plan ade- quate preventive strategies. * the study was supported by the local section of the italian association in the fight against headaches (aic – onlus). clinical study and follow-up in preschool age children suffering from primary headache p.a. battistella, e. fiumana, m. binelli, e. bertossi, p. battista, e. perakis, s. soriani department of paediatrics, university of padua, padua, italy; clinic of pediatrics, university of ferrara, ferrara, italy; e-mail: battist@pediatria.unipd.it introduction in preschool children, the prevalence of headache ranges from % to % and migraine from % to . %; moreover, % of migraineurs have their first attack in the preschool period. goals of this study were to compare two different paediatric age groups of headache sufferers and to evaluate the existence of predictive factors. subjects and methods two groups of subjects were considered: the first group (g ) with early headache onset (< years old) and the sec- ond (g ) with late onset ( – years old). the diagnosis was made according to the ihs criteria (retrospective study). results g consisted of subjects, mean age at first evaluation . ± . years (range – ) and mean age at headache onset . ± . years (range – . ), and g consisted of subjects, age at first eval- uation . ± . years (range – ) and mean age at headache onset . ± . years (range – . ). the male percentage was higher in g ( %) than in g ( %). the attacks lasted less than hour in % of g and % of g . associated symptoms prevailed in g : nausea ( % vs. %), photophobia ( % vs. %) and phonophobia ( % vs. %), while vomiting was similar ( % vs. %). in g compared to g , the diagnosis of migraine (m) was made in % vs. %, tension- type headache (tth) in % vs. %, and idiopathic stabbing headache (ish) in % vs. %. in g , % were not classifiable ( % in g ). the diagnosis of migraine disorder . prevailed in g ( %) vs. g ( %) as well as tension-type disorder . ( % vs. %). family history of headache prevailed in g ( %) vs. g ( %). the mean follow-up of g was . ± . years (range . – ). the first diagnosis remained the same for % of m and % of tth. none of the subjects with episodic tth became chronic, while % of those with chronic tth became episodic. the prognosis was: remission ( %), improvement ( %), worsening ( %), and stability ( %). favourable evaluation was superior in tth and ish compared to m. unfavourable outcome was associated with vomiting during attacks. discussion this study shows different gender distribution in the two groups as reported in the literature. our data suggest that preschool age headache has different clinical characteristics. positive family history represents an additional risk factor for young patients, especially for m. in our follow-up, headache with preschool age onset seems to have a relatively benign prognosis. osmophobia in juvenile primary headaches e. corletto, p.a. battistella, f. dainese, l. dal zotto, f. maggioni, a. resos, g. zanchin department of paediatrics, university of padua, padua, italy; headache centre, department of neurosciences, university of padua, padua, italy; e-mail: battist@pediatria.unipd.it introduction the differential diagnosis between migraine (m) and tension-type headache (tth) is based on ichd-ii criteria ( ), among which the associated symptoms of nausea, vomiting, photo- and phonophobia are very important. osmophobia (o), commonly described during migraine attacks and reported in the “appendix” of ichd-ii as a possible accompanying symptom of migraine without aura (mo), has never been studied in childhood headache. the aims of the study were: to evaluate the prevalence of o in juvenile primary headache sufferers in m versus tth patients; to analyse which attack phase is most frequently associated with o; to verify possible correla- tions with gender and/or age; to identify the prevailing types of offend- ing stimuli; and to assess whether and which odours might trigger attacks. patients and methods we recruited consecutive outpatients referred to the childhood and adolescent centre for headaches in , mean age of . years (range – years), females and males. according to ichd-ii criteria, m was diagnosed in patients ( %; mo , ma ), and tth in patients ( %; etth , ctth ). results prevalence: during the attacks, . % of headache patients reported o. gender: o was reported by . % of females and . % of males. age was uncorrelated with o. type of headache: o was more frequent in m ( . %) than in tth patients ( . %). specifically, o was prevalent among male m sufferers ( . % vs. . %), and female tth patients ( % vs. . %). the other associated symptoms were: nausea ( . %; m patients, . % vs. tth, . %); vomiting ( . %; m patients, . %); photophobia ( . %; m patients, . % vs. tth, . %); phonophobia ( %; m patients, . % vs. tth, . %). among osmophobic patients, . % reported o during the attack and % prior. the offending odours were perfumes ( . %), food-related smells ( . %), smoke ( . %), and other odours ( . %). the olfacto- ry stimulus triggered the attack in . % of osmophobic patients, that is, in . % of the entire study population (mo, ma, tth). discussion our preliminary results indicate that o is present during headache attack also in juvenile primary headaches, particularly in migraineurs, but it seems less specific than in adults. the main offend- ing odour is perfume. headache recurrence in family and clinical characteristics: a clinical study on chil- dren and adolescents l. canzano, f. galli, v. guidetti department of child and adolescent neurology, psychiatry and rehabilitation, university la sapienza, rome, italy; e-mail: federica.g@uniroma .it introduction migraine is a complex disease, where genetics and biol- ogy interact with environmental factors, determining a polygenic mul- tifactorial etiology. objective the aim of this study was to analyse whether the clinical characteristics of migraine change according to headache familial recurrence compared with other headache subtypes (ohs). subjects and methods two hundred children ( m; f; range . – . years) and their parents were enrolled in the study. to record headache history and symptomatology, a semistructured interview (ichd-ii criteria ) was carried out. data were collected on the occurrence of headache in first and (indirectly) second-degree rela- tives. chi-square was computed to analyse contingency tables. results cross-checking data on the family history of migraine and ohs, we found that patients ( %) were positive for migraine. thirty-eight children had no positive family history of either migraine or ohs ( %), whereas children had one parent diagnosed with either migraine or ohs ( . %) and children had both parents diag- nosed with either migraine or ohs ( . %). prevalence of headache of any kind in parents was %, with a predominance in the family of migraineurs. twenty-two patients did not have any parents with headache ( % vs. % ohs); had only the mother ( % vs. % ohs); only the father ( . % vs. % ohs); and had both parents ( . % vs. % ohs). the clinical characteristics and age at onset of migraine were not influenced by the presence of headache in parents, but considering second-degree relatives (double familial loading), dif- ferences in headache characteristics were found: aura and photophobia (p< . ). discussion the recurrence of headache in family members strongly suggests a genetic transmission of headache. however, this kind of transmission was studied extensively in migraineurs, even though one study [ ] showed a . -fold increased risk of chronic tension-type headache among first-degree relatives of probands with chronic ten- sion-type headache. our findings underscore the importance of genet- ic factors (mostly in the maternal line) in migraine, but less for tension- type headache. no difference in clinical phenotype exists in migraine according to familial occurrence, except for aura and photophobia, if double familial loading was considered. conclusions children with migraine have more often first and second- degree relatives with migraine (mainly in the maternal line). only the symptoms of photophobia and aura seem to show the effect of a likely genetic-related transmission. reference . Østergaard s, russell mb, bendsten l, olesen j ( ) comparison of first degree relatives and spouses of people with chronic tension headache. bmj : – the cold pressor test: comparison between children with headache and their healthy peers m. trapanotto, d. gobber, f. benini, g. pozziani, s. barbieri, p.a. battistella department of paediatrics, university of padua, padua, italy; e-mail: manuela.trapanotto@unipd.it introduction few studies have investigated experimentally-induced pain perception in children with chronic painful symptoms, especially psychophysiological reactivity. this type of research may elucidate certain mechanisms occurring in chronically painful conditions [ , ]. the aim of this study was to assess reactivity to pain induced with the cold pressor test - turning to subjective, behavioural and physiological parameters - in a group of headache children compared with healthy children. patients and methods thirty-two patients affected by recurrent pri- mary headache ( m, f) ( with migraine without aura (mo); with chronic tension-type headache (ctth)) (mean age . years; sd . ), for over months, were compared with the sample of healthy children ( m, f) (mean age . years; sd . ). in this study a new instrument, validated in a previous research, was used to induce cold pressor pain. procedure the child was asked to immerse the arm in water at ambi- ent temperature (baseline) and a visual analogue scale and face scale were administered. after minutes, the child was asked to put the arm into the tank containing cold water at °c (start) and to report the first pain sensation (threshold) and intolerable pain (tolerance). between these two stages, at -second intervals, the child assessed the pain on a scale of - . at the end of pain induction (max minutes), the child again placed the arm in the first tank and repeated the subjective scales (recovery). during the test, the cardiovascular indexes were recorded continuously and the pressor indexes were measured three times. results the mean age of headache children was slightly higher than that of healthy children. the latency times for the pain threshold were comparable in the two groups, whereas the pain tolerance was higher in the headache sufferers. the sensorial and affective assessments, like the trend of the pain, were comparable in the groups. during the painful stimulation, an increase in all the cardiovascular indexes - with the exception of the resistances which diminished – was observed. although no statistically significant differences emerged, the mean stroke volume values and peripheral resistances tended to be higher in the headache sufferers. the headache characteristics did not influence the children’s pain perception. conclusions apart from a greater pain tolerance, reactivity to pain in patients with recurrent headache seems to be much the same as in healthy children. physiological indicators follow the same trend in the two groups, although minor differences might suggest a hyperfunc- tioning of the sympathetic nervous system in the headache sufferers. references . smith ms, martin-herz sp, womack wm, mcmahon rj ( ) recurrent headache in adolescents: non-referred versus clinic pop- ulation. headache : – . zeiter dk, hyams js ( ) recurrent abdominal pain in children. pediatr clin north am : – headache in childhood and adolescence ii the impact of life events on primary headache in children and adolescents f. galli, l. canzano, v. guidetti department of child and adolescent neurology, psychiatry and rehabilitation, university la sapienza, rome, italy; e-mail: federica.g@uniroma .it introduction the relevance of psychological factors as triggers of headache disorders has been extensively outlined, but often without making clear distinction between the occurrence of life events, psychi- atric comorbidity, or psychosocial factors. the association between different headache subtypes and the direction of influence between psychological factors and headache is a matter of debate. the aim of this study was to analyse the occurrence of major life events in differ- ent headache sub-types. subjects and methods to record headache history and symptomatol- ogy, we used a semistructured questionnaire with a section on history of life events (e.g. divorce, moving, serious illnesses, etc). this ques- tionnaire was administered to parents to collect data on children and adolescents (range . - . years; m; f) with migraine with- out aura (mo), migraine with aura (ma), and episodic and chronic tension-type headache (etth) (ctth). headaches were diagnosed according to icdh-ii criteria ( ). chi-squares were computed in order to analyse contingency tables. results of migraineurs, ( %) subjects showed significant life events (mo= ; ma= ), and of tension-type headache patients, ( . %) showed the same condition (ctth= ; etth= ), whereas . % ( / ) of ctth, % ( / ) of ma, . % ( / ) of mo and . % ( / ) of etth patients showed significant life events (p< . ). discussion major life events (divorced, widowed, separated) have been related to headache chronicity in adults [ ]. karwautz et al. [ ] showed that migraine was not related to psychosocial factors, whereas tth was associated with a higher rate of divorced parents and fewer peer relations. our findings confirmed the recurrence of life events both in ctth and ma (the severest headache sub-types for recurrence and intensity rates), independently from likely genetic factors (more related to ma). conclusions this study shows an important link between major life events and headaches, which points toward the relationship between headache and psychological factors. references . scher ai, stewart wf, ricci ja, lipton rb ( ) factors associ- ated with the onset and remission of chronic daily headache in a population-based study. pain ( – ): – . karwautz a, wöber c, lang t et al ( ) psychosocial factors in children and adolescents with migraine and tension-type headache: a controlled study and review of the literature. cephalalgia ( ): – psychiatric comorbidity and primary headache in children and adolescents: a clinical study on familial recurrence f. galli, l. canzano, v. guidetti department of child and adolescent neurology, psychiatry and rehabilitation, university la sapienza, rome, italy; e-mail: federica.g@uniroma .it introduction the relevance of psychiatric comorbidity (psi-co) in headache raises questions on the likelihood of a common etiological mechanism and direction of influence. objective our aim was to analyse the relationship between familial recurrence of headache and psychiatric disorders by estimating the prevalence of mood, sleep and anxiety disorders in children compared with their parents’ psi-co and headache. patients and methods headache history and symptomatology were collected in a clinical sample of patients and their families, using a semistructured questionnaire (ichd-ii criteria, ). the question- naire was composed of different sections in which we assessed psi-co in parents, according to dsm-iv criteria. chi-square was calculated to analyse contingency tables. results one hundred and twenty-three patients ( . %) referred psy- chiatric disorders: ( . %) sleep disorders, ( . %) anxiety dis- orders, and ( %) mood disorders (multiple disorders co-occurred in % of patients). comparing psychiatric comorbidity and different diagnosis: ( . %) migraine without aura (mo) and ( %) migraine with aura (ma) children had psychiatric disorders, versus ( . %) chronic tension-type headache (ctth), and ( . %) episodic tension-type headache (etth) patients (n.s.). analysis of psi- co showed that mothers ( %) and fathers ( . %) had at least one psychiatric disorder (mainly mood and anxiety disorders), while analysis of headache diagnoses in children (migraine) revealed a signif- icantly statistical relation when comparing migraineurs versus non- migraineurs: parents of children with migraine showed higher levels of maternal psi-co, (p< . ). it is worthy to note, that patients of mothers with psi-co showed higher recurrence of psychiatric disorders than chil- dren whose mothers had no history of psychiatric disorders: ( . %) vs. ( . %) (p< . ), without differences across headache subtypes. children suffering from multiple psychiatric disorders had more often mothers with psychiatric disorders than those children whose mothers had no history of psychiatric disorders (chi = . ; gdl= ; p= . ). by considering anxiety disorders, we found that of children ( %) had mothers with anxiety disorders, while of children who did not suffer from this disorder, ( %) had mothers with psychiatric disorders (mother: chi = . ; p= . ; father: chi = . , n.s.). discussion not only migraine, but also psychiatric disorders run in families. this finding needs to be further studied to understand the influence and likelihood of a co-transmission of headache and psychi- atric disorders. conclusions the occurrence of psychiatric disorders is high not only in children with headaches but also in their parents and is common to all headache subtypes, even though it is greater in migraine than in other headache subtypes. it may be due to a genetic mechanism, but the role of a shared familial environment needs exploration. headache comorbidity in childhood e. tozzi, m.i. florio, e. cicconi, r. savini, g. sciarone paediatric clinic, university of l’aquila, l’aquila, italy; e-mail: etozzi@univaq.it introduction headache comorbidity has been studied more in adults than in children and adolescents. comorbidity is very important and in recent years has influenced diagnostic procedures and therapy. aim the aim of the present study was to evaluate retrospectively the comorbidity in children to verify any differences among patients pre- senting headache with and without comorbidity. patients and methods the sample consisted of children, males and females, who presented to the paediatric headache clinic of the university of l’aquila in the last year ( ). each patient completed a questionnaire with information about the headache and personal history. the age range was – years. the children were divided into groups according to age: group , children, aged – years; group , children, aged – years; and group , children, aged – years. results fifty-four patients suffered from tension-type headache (tth) and from migraine with and without aura (m). comorbidity was found in % of the sample and there were differences among the groups: % in group , % in group , and % in group (p< . ). the prevalent comorbidities were: sleep disorders ( %), thinness ( %), epilepsy ( %), obesity ( %), fainting ( %), allergies ( %), and psychiatric disorders ( %). there was no difference between males and females. epilepsy, thinness, and allergies were prevalent in migraine patients, whereas obesity and psychiatric disor- ders were prevalent in tth patients (p< . ). conclusions we underline the high percentage of comorbidity in ado- lescence (group ). epilepsy and obesity are factors that have an influ- ence on the therapy of children examined. how the loss of either parent affects a child’s headache d. moscato, m.i. peracchi childhood headache centre, s. charles hospital, rome, italy; e-mail: dmoscat@tin.it an event with strong emotional impact, such as the loss of a family member, has often been indicated as a trigger for headache. the pur- pose of this study was to compare the headache characteristics of a group of patients without either parent. in months, patients were evaluated, of whom ( . %) without either parent (separation, . %; divorce, . %; death, . %). these were compared with young headache sufferers (hs) having both parents. headache charac- teristics and psychiatric comorbidity were evaluated. group i: n= ( m, f), age range – years; mean . ± . years. group ii: n= ( m, f), age range – years; mean . ± . years. episodic tension-type headache (etth) and migraine without aura (mo) were reviewed. migraine with aura (ma) (group i: n= ( f, m), m.i.(dxi) ± . ; group ii: n= ( f, m), m.i. . ± . , p< . ). etth (group i: n= ( f, m), m.i. ± . ; group ii: n= ( m, f), m.i. . ± . , p< . ). in only % of group i did the onset of headache coincide with the loss of either parent ( ma, etth). in group i, anxiety was higher in etth patients, and depres- sion in those with ma. headache is more evident in hs who have lost a family figure, but is not a trigger. the high levels of anxiety and depression show greater involvement of hs. more attention to the child’s environment is per se a therapeutic intervention. migraine and tension-type headache in child- hood and adolescence: is the psychotherapeutic approach more or less effective than tradition- al outpatient treatment? a controlled trial m. rossi, m. racca, c. termine, m. ferri, m. chiappedi, g. rossi, g. lanzi, u. balottin department of child neurology and psychiatry, irccs “c. mondino foundation”, university of pavia, pavia, italy; child neuropsychiatry unit, department of clinical and biological sciences, university of insubria and “macchi foundation”, varese, italy; e-mail: romaura@libero.it introduction the management of child and adolescent idiopathic headache currently involves psychological interventions in association with pharmacotherapy. despite the fact that psychological therapies are nowadays widely used in clinical practice, yet there is a paucity of research on their efficacy. the present study is a randomised controlled trial evaluating the effectiveness of brief psychodynamic therapy (bpt) in the treatment of child and adolescent idiopathic headache. subjects and methods subjects aged from to years referring to our outpatient service for newly diagnosed idiopathic headache were randomly assigned to either an experimental group or a control group. within the experimental group, patients received a time-limited ( – sessions) psychodynamic therapy, held in individual or family ses- sions, every two weeks. in contrast, the control group performed the standard outpatient treatment, which entailed a follow-up visit every two months after the first consultation. the two groups were evaluated at baseline (t ) and at a -month follow-up after the beginning of the study (t ). measures of effectiveness were reduction of attack fre- quency, duration and intensity and improvement in patients’ quality of life and global functioning, as reported by euroqol, cbcl and cgi scores. given the small sample size, statistical analyses were per- formed with a % level of significance. results thirty-three subjects completed the study: patients ( males, females; mean age . years; sd± . ) were assigned to the experimental group and subjects ( males, females; mean age . ; sd± . ) were allocated to the control group. comparing the two treatment groups at t , there were no significant differences in the main demographic and clinical data. at t the experimental group exhibited a statistically significant reduction in the duration of headache attacks (p= . ) and improvement in the patients’ quality of life, as reported by euroqol (p< . ). furthermore, t /t compari- son showed a statistically significant improvement in the cbcl psychosomatic complaints scale score (p= . ) in the experimental group. individual and family psychotherapeutic approaches seemed to be equally effective. discussion compared to the usual outpatient treatment, bpt was more effective in the treatment of idiopathic headache, both at the clinical and psychopathological level. conclusions the relation between headache and psychopathology is controversial; yet the present study provides some evidence of the effectiveness of brief individual or family psychodynamic therapy in the treatment of idiopathic headache in childhood and adolescence. indeed, a better mental elaboration of intrapsychic conflicts may have a protective role in the development of psychosomatic diseases. headache in childhood and adolescence iii the prevalence of pre- and perinatal complica- tions in children with headache: a study of patients and their mothers f. galli, l. canzano, v. guidetti department of child and adolescent neurology, psychiatry and rehabilitation, university la sapienza, rome, italy; e-mail: federi- ca.g@uniroma .it introduction genetic and environmental factors are hypothesized to be involved in the pathogenesis of migraine to a similar degree. twin data showed that the genetic liability to migraine is about %– %, and the contribution of non-shared environmental factors ranges from % to % [ – ]. the study of environmental factors is compelling, as well as genet- ic studies, in order to search for factors differentiating primary headache. the aim of this study was to analyse the risk of migraine according to the influence of complications during the pre/perinatal period. patients and methods in a sample of patients diagnosed with headache and their mothers (ichd-ii criteria, ), we analysed patients histories using a semistructured interview administered to the mothers. chi-square was computed to analyse contingency tables. results sixty-four percent of the patients showed at least one pre/peri- natal problem: . % ( / ) reported prenatal problems and . % ( / ) perinatal problems. there was no difference between the occurrence of migraine or tension-type headache in patients. analysing the headache subtypes of mothers, migraineurs had children with more pre/perinatal problems ( . %, / ), than mothers who did not suffer from headache ( . %, / ) (p<. ). discussion the explanation may be only speculative, but the occur- rence of such a prevalence of pre/perinatal problems needs further stud- ies, because of the likely implication in the pathogenesis of migraine and non-migrainous headache. it is noteworthy that migrainous moth- ers of migraine children showed a higher risk during pregnancy or delivery: it may be speculated that migraine is a risk factor for preg- nancy and delivery, whereas pregnancy is a protective factor for migraine attacks in most women. aromaa et al. ( ) [ ] showed that women with prepregnant headache had more pregnancy symptoms, as well as poor emotional health and higher stress scores than controls. it is noteworthy that migrainous mothers of migraine children showed the highest risk during pregnancy and delivery. conclusions headache patients show a very high prevalence of pre/perinatal problems compared to data from the general population ( %– %) [ ]. moreover, migraine in mothers is a risk factor both for developing migraine in children and the occurrence of pre/perinatal complications. the data has important aetiological and pathophysio- logical implications. references . larsson b, bille b, pedersen nl ( ) genetic influences in headache: a swedish twin study. headache : – . ziegler dk, hur ym, bouchard tj jr et al ( ) migraine in twins raised together and apart. headache : – . gervil m, ulrich v, kaprio j et al ( ) the relative role of genet- ic and environmental factors in migraine without aura. neurology : – . ducros a, tournier-lasserve e, bousser mg ( ) the genetics of migraine. lancet neurol : – . aromaa m, rautava p, helenius h, sillanpaa m ( ) prepregnancy headache and well-being of mother and newborn. headache : – . waldie ke, poulton r ( ) physical and psychological correlates of primary headache in young adulthood: a year longitudinal study. j neurol neurosurg psychiatry ( ): – recurrent abdominal pain and headache are related to internalising disorders: a con- trolled study by cbcl f. galli, g. d’antuono, s. tarantino, f. viviano, o. borrelli, v. guidetti department of child and adolescent neurology, psychiatry and rehabilitation, university la sapienza, rome, italy; department of paediatric gastroenterology, university la sapienza, rome, italy; e-mail: federica.g@uniroma .it introduction recurrent abdominal pain (rap) and headache are among the most common reason for paediatric consultation. both disorders affect daily life and activities: school absence, eating and sleeping prob- lems, incapacity to meet friends, and interruption of sports. few studies have been realized comparing the two disorders, even though similari- ties characterize these disorders since the youngest age: recurrent, paroximal, painful symptoms, and high familial recurrence, with com- parable psychological pattern (mainly anxiety disorders). headache and rap sufferers show anxiety (e.g. generalized anxiety, school and social phobia) and mood disorders [ , ]. however, very few studies on com- mon psychological characteristics have been realised. patients and methods we compared the occurrence of internalising and externalising disorders in headache, rap and control group with the meaning of children behavior checklist (cbcl) [ ]. the cbcl was administrated to the accompanying parent of headache patients, rap and control subjects (range age – . ). the headache patients ( migraine without aura, migraine with aura, episodic ten- sion-type headache, chronic tension-type headache) were recruited at the child and adolescent headache centre of the university la sapienza. headache diagnosis were made according to ihs criteria (ichd-ii, ). children with rap (without organic cause) (n= ) were recruited from the department of paediatric gastroenterology of the university la sapienza. rap diagnosis respected apley and naish’s criteria [ ]. the control group matched sample was recruited in different schools. for statistic analysis, mann-whitney test was used. results forty-eight percent of headache children and % of children with rap showed statistically significant scores for internalising scale compared to the control group (only %) (p< . ). none of the scores for externalising scale disorders was significant in all the three groups. no difference according to gender and age of patients was found. discussion the headache and rap groups showed a very similar trend in the association with internalising disorders (anxiety and mood dis- orders), outlining the role of psychological factors. headache and rap patients showed a similar psychopathological liability (anxiety/mood disorders), related to somatization disorders. conclusions from the youngest age, with the assessment and inter- vention on psychopathology it is critical to manage headache and rap and prevent somatization. references . just u, oelkers r, bender s et al ( ) emotional and behaviour- al problems in children and adolescents with primary headache. cephalalgia : – . scharff l ( ) recurrent abdominal pain in children: a review of psychological factors and treatment. clin psychol rev : – . achenbach tm ( ) manual for the child behavior checklist/ - and profile. department of psychiatry, university of vermont, burlington, vt . apley j ( ) the child with abdominal pain. blackwell, oxford pet therapy as behavioural treatment in child- hood migraine d. moscato, m.i. peracchi, m. mecaroni, v. brizi childhood headache centre, san carlo idi, rome, italy; e-mail: d.moscato@idi.it introduction pet therapy (pt) was born accidentally for the treatment of autism [ ]. studies have ascertained that this therapy positively modifies several physical parameters (ap, ecg, eeg, etc.). in pt, the animal, with the help of expert personnel, acts as an emotional media- tor in thus helping the patient to overcome several psychic, psycho- social, and also psychomotor problems. in the genesis of headache, both psychiatric comorbidities and social discomfort have considerable weight. in the past, we published data, that indicated the positive effect of this therapy for young headache sufferers [ , ]. patients and methods forty-eight young patients (yp) were included in the study ( f; m; mo, ma, range / years), in whom the triggering cause was mainly linked to psycho-social discomfort (in the family, at school or in the peer group) and who had high levels of anx- iety and/or depression. the therapeutic scheme consisted of weekly sessions lasting hour each. pt takes place in a sq.m. garden with trees, animals (dogs, cats, rabbits, birds, sheep), psychotherapists and groups of yp aged – , – and – . the data controlled at t and t weeks for headache: duration and frequency with migraine index (m.i.); for the psychological aspect: drawing of the family, cdi, culture-free self-esteem inventory (cfsi), fab-c, ability to deal with a situation of discomfort, and semistructured questionnaire for parents. results headache showed a > % reduction (m.i. . +/- , . +/- . ; p< . ). the psychological characteristics greatly changed both in the values of the tests cdi ( . +/- . , . +/- . ; p< . ), cfsi ( . +/ . , . +/- . , p< . ), fab-c ( . +/- . , . +/- . , p< . ), but above all, in how situations of discomfort were dealt with. conclusions undoubtedly, how pet therapy works is complex, since three factors must be evaluated: the relationship with the animal world, the psychotherapists, and finally, the therapeutic group. we think that pt works as a result of taking care of the animal, through which the child learns to abide by rules, socializes in handling animals, and acquires greater confidence. thus, we believe that this intervention may be very useful in childhood migraine. references . mcnicholas j, collis gm ( ) relationships between young people with autism and their pets. th international conference on human-animal interactions, animals, health and quality of life, september – , geneva, switzerland . moscato d, peracchi mi, bochicchio f et al ( ) a new therapeu- tic tool for juvenile migraine: the pet therapy. cephalalgia : . moscato d, seracchi mi, bochicchio f et al ( ) pet therapy: a new therapeutic strategy for childhood headache. abstracts xviii sisc national congress, – october. j headache pain [suppl ]:s quality of life and headache evolution in a child and adolescent cohort d. brovia, s. cesi, m.m. cainazzo, l.a. pini headache study centre, university of modena and reggio emilia, modena, italy; e-mail: pinila@unimore.it introduction this study examined the changes in the clinical picture during the different phases of childhood with regard to the quality of life, headache treatment and diagnoses following the ichd-ii criteria. subjects and methods the study included subjects with age rang- ing between and years visited at the modena headache centre between january and december . the diagnosis according to ihs criteria (ichd-ii) were migraine with (ma) and/or without aura (mo), chronic and episodic tension-type headache. all diagnoses were re-evaluated following the ichd-ii criteria. the present data are referred to one third of the group ( cases). the quality of life was cal- culated by using the ped-midas questionnaire and the child depression inventory (cdi). we checked headache frequency, intensi- ty, drug use and the presence of other treatment at the control visit. results at the moment, all the first diagnoses were confirmed after one-year ( ± months) follow-up ( . % ma, % mo, % episod- ic tension-type headache (etth), . % chronic tension-type headache (ctth)). the clinical evolution was favourable in all patients and the mean number of days with headache was / ; the intensity of pain was unchanged. eighty percent of examined subjects showed a ped- midas score < , which means no or mild disability, and only % reached a moderate score of disability (> ). the cdi scores ranged from to , which is considered within the normal range ( – ). in items there were more “pathologic responses” than normal responses: item “desperation”, %; item “negative body image”, %; item “self devaluation”, %; and item “disobey”, %. only one half of patients underwent prophylactic treatment lasting two months, ( % with calcium antagonists and % with tryptophan compounds). the drug most used for the treatment of attacks was paracetamol ( %) and only patients used ketoprofen or sumatriptan spray. none underwent psychological treatments in this first series. discussion data revealed the constancy of the diagnoses, which could be related to the short follow-up period we examined, and the clinical improvement of these subjects, even if only % of the subjects under- went a real prophylactic short-term treatment. the cdi test showed that patients had a bad perception of themselves with low self-esteem and often feelings of desperation. these emotional states were con- nected to disobedience and a negative body perception, which were confirmed by clinical experience. conclusions the data are only preliminary and do not allow correct statistical analysis which was avoided, but we plan to complete the examination of all cohorts within two months. therapeutical choices: the state of the art and future developments a six month open-label study to test efficacy and tolerability of levetiracetam as prophylac- tic treatment of migraine with aura f. brighina, a. palermo, a. aloisio, m. francolini, o. daniele, b. fierro department of neurology, ophthalmology, otorhinolaryngology and psychiatry, university of palermo, palermo, italy; e-mail: filippo.brighina@virgilio.it introduction migraine with aura with high frequency of attacks could represent a very demanding therapeutic problem. d’andrea et al. [ ] reported efficacy of the antiepileptic drug lamotrigine in this form of migraine. levetiracetam is a new antiepileptic drug with an excellent tolerability profile. mechanisms of action of this drug remain largely unknown, but recently, levetiracetam has been shown to exert inhibito- ry effects on n-type calcium channels. the aim of this study was to evaluate the efficacy of levetiracetam as prophylactic treatment for migraine with aura with high frequency of attacks. methods we performed a small open-label trial treating patients affected by migraine with aura with high frequency of attacks. after a -month run-in period, patients were treated with levetiracetam at the dosage of mg/day for months. results attack number per month was significantly reduced during the first month (vs. run-in: p< . ), and it further lowered during the sec- ond month ( nd vs. st month: p< . ) and the third month ( rd vs. nd month: p< . ) of the treatment. this improvement persisted unchanged during the remaining three months of treament. in of patients ( %), the attacks were completely abolished after months of treatment. severity and duration of headache and duration of aura were also significantly reduced at the rd and th months (p< . ). levetiracetam was well tolerated (only patients complained of light dizziness and somnolence). conclusions levetiracetam was proven effective and safe in the treat- ment of migraine with aura. controlled trials are needed to confirm the observed results. reference . d’andrea g, granella f, cadaldini m, manzoni gc ( ) effectiveness of lamotrigine in the prophylaxis of migraine with aura: an open pilot study. cephalalgia ( ): – acupuncture efficacy in the preventive therapy of migraine patients with occipital pain local- ization: preliminary results of a pilot study g. bruti, c. mostardini, v. villani, f. di stani, a. liguori, f. petti, l. guardia, n.v. viet, c. panico, m. cannizzaro, r. cerbo headache section of “enzo borzomati” pain centre, policlinico umberto i, department of neurological sciences, university la sapienza, rome, italy; paracelso institute, rome, italy; e-mail: gian- luca.bruti@uniroma .it background the potential role of acupuncture for the treatment of chronic neck pain as well as for the prevention of migraine has been demonstrated. recently, it has been suggested that the trigeminocervi- cal complex plays a crucial role in the pathophysiology of neck dis- comfort which accompanies the migraine attack. the aim of this study was to evaluate the efficacy of acupuncture treatment in the prevention of migraine with occipital pain localization. patients and methods a sample of migraine patients suffering from “back” pain was consecutively recruited according to ichd-ii criteria ( ). all patients underwent neurological examination, tenderness examination of craniomandibular muscles and physical examination of the cervical spine. the beck depression inventory (bdi) and the state and trait anxiety inventory (stai - ) were also administered to each patient. to evaluate migraine disability, headache impact test items (hit- ) and migraine disability assessment (midas) were adminis- tered. the acupuncture treatment consisted of a combination of body acupuncture and ear acupressure. point selections was carried out, according to the literature, considering each acupoint to have a positive effect on chronic pain in the neck regions. each subject received two treatments per week and a total of treatments over an -week period. preliminary results of the patients recruited (mean age±sd = ± years; females and males), patients had completed the study (mean age±sd = ± years), and female patients dropped out. after the acupuncture treatment period, we observed a significant reduction of the scores in the clinical and psychometric variables in all migraine patients (p< . ). conclusions our data confirm that adequate acupuncture treatment may reduce the frequency and intensity of pain as well as migraine disability also in patients with severe and refractory migraine. the therapeutic efficacy of acupuncture in migraine treatment has been observed also in the reduction of depressive and anxiety states. we hypothesized that an accurate and multidisciplinary evaluation of migraine patients performed by both the acupuncturist and neurologist may be important to specifically select the acupoints in a heteroge- neous pathology such as migraine. it may be important to pick out these clinical features in migraine, not only for the therapeutic impli- cations but also for understanding the pathophysiological link between cervical spine and pain features of migraine attack as well as for understanding the therapeutic “mechanisms of action” of acupunc- ture in migraine prophylaxis. an experience of hata yoga as a side therapy for headache sufferers m. galli, m. paganelli, l.a. pini lega italiana cefalalgici – onlus, modena, italy; e-mail: pinila@uni- more.it introduction since chronic headache often produces generalized pain and is often accompanied by depression and/or anxiety, we thought that self-help groups could be of therapeutic benefit. patients and methods twenty-five patients suffering from chronic daily headaches ( % with analgesic overuse, as stated by the ichd- ii classification), women and men aged – years (mean age ) participated freely in this study. a trained yoga master led the group in hata yoga and a questionnaire was used to evaluate the results of this approach. each session lasted one and one-half hours once a week in the period november –march . results although patients were often in pain, worked and had a fami- ly to take care of, the attendance was always quite high. from the ques- tionnaire, % of participants reported that they had learned to relax, by reaching an inner calm, and freeing their minds when “the whole body was wreathing with pain”. their opinion regarding this experi- ence was excellent and % referred a significant improvement in their quality of life. conclusions the patients discovered that they needed to learn to listen to their body and breathing despite the frantic type of life they led. they also discovered the pleasure and the importance of taking care of themselves as a whole rather than following a purely rational, drug-based approach to their disorder. also, being together with other people who understood each other when they tried to explain their pain proved extremely encour- aging and reassuring. the caring and sharing has been a highly helpful aspect of the yoga activities. *this experience was supported by grants from lega italiana cefalalgici (lic) and the municipality of modena. hypnic headache: treatment and report of four cases a. romorini, g.m. patruno, g. alberti neurology unit, magenta hospital, milan, italy; e-mail: alessandro.romorini@ao-legnano.it hypnic headache (hh) is a rare syndrome first described by raskin in [ ]. until , over cases had been reported in the literature [ ]. the pathophysiology of hypnic headache is unknown, but the hypothesis of a chronobiological disturbance is also supported by the efficacy of lithium in disorders such as cluster headache [ ]. the four clinical cases consisted of two men aged and years, and two women aged and years, who fulfilled the criteria of the international headache society classification (ichd-ii) [ ]. magnetic resonance imaging, electroencephalography and twenty-four hour blood pressure monitoring were normal. polysomnographic findings in a male patient also demonstrated sleep apnoea syndrome. the prophy- lactic treatment with caffeine and melatonin, administered together before bedtime, reduced in over fifty percent of the patients the fre- quency and intensity of headache. some studies suggested that hh may be a rem sleep disorder related to disturbances of the brainstem [ ], but the attacks can occur also in some patients during non-rem sleep [ ]. in older patients, the function of the hypothalamic-pineal axis is reduced, thus impairing melatonin secretion. lithium increased melatonin levels. we suggest caffeine and melatonin as possible first line prophylactic treatment in these patients. references . raskin nh ( ) the hypnic headache syndrome. headache : – . evers s, goadsby pj ( ) hypnic headache: clinical features, pathophysiology and treatment. neurology : – . the headache classification subcommittee of the international headache society ( ) the international classification of headache disorders, nd edn. cephalalgia [suppl ]: – . dodick dw ( ) polysomnography in hypnic headache syn- drome. headache : – . manni r. sances g, terzaghi m, et al ( ) hypnic headache: psg evidence of both rem- and nrem-related attacks. neurology : – autologous epidural blood patch in the treat- ment of headache caused by spontaneous csf leak e. ferrante, r. wetz, i. arpino, a. savino neurosciences and emergency room deparment, niguarda cà granda hospital, milan, italy; e-mail: enricoferrante@libero.it objective to evaluate the efficacy of epidural blood patch (ebp) in the treatment of headache by spontaneous csf leakage (scsfl) [ ]. background spontaneous intracranial hypotension (sih) generally results from spontaneous spinal csf leakage. ebp has emerged as the most important nonsurgical treatment for scsfl. we have attempted to determine the efficacy of ebp in the treatment of headache by scsfl. patients and methods we observed patients with scsfl between and . in patients ( women and men; age range – years, mean age ) we performed ebp treatment. follow-up ranged from months to years. all patients had received ebp in the lumbar region, using to ml (mean ml) of autologous blood. results all patients had orthostatic headache. other manifestations were nausea, vomiting, mild neck stiffness, tinnitus, blurred vision, diplopia, and bilateral upper limb numbness. spinal taps were per- formed in patients. the level of the leak was determined in patients. all patients failed an initial conservative treatment, which consisted of bed rest and hydration, (over a period of to months). the first ebp patients ( %) became asymptomatic; one patient responded only to a third ebp. in patients the ebp was given at the lumbar level where we found the leak, instead patient with cervical csf leak received ebp at a different level from the leak. “blind” lumbar ebp was performed in patients. all patients after injection remained in the trendelenburg position at approximately ° for hours. headache relief was obtained immediately. conclusions our data confirm the efficacy of ebp and also suggest the efficacy of “blind” lumbar ebp and especially the importance of a pro- longed trendelenburg position in scsfl. reference . ferrante e, savino a, sances g, nappi g ( ) spontaneous intracranial hypotension syndrome: report of twelve cases. headache : – headache by spontaneous cervical csf leak treated with lumbar epidural blood patch e. ferrante, i. arpino, a. citterio, e. boccardi, p. tiraboschi, a. savino neurosciences and emergency room department, niguarda cà granda hospital, milan, italy; e-mail: enricoferrante@libero.it objective to evaluate the efficacy of lumbar epidural blood patch (ebp) in the treatment of spontaneous cervical csf leakage (sccsfl) [ ]. background spontaneous intracranial hypotension (sih) generally results from spontaneous spinal csf leakage. treatment is usually con- servative, consisting of bed rest. sometimes an autologous ebp at the site of csf leakage may be necessary. when csf fistula occurs at the level of the cervical spine, ebp is difficult to perform. design/methods we report one case of sccsfl (among the with this condition evaluated between and the present). results a -year-old woman presented sudden, intense nucal pain, lasting for about s, followed by gravative occipito-nucal and frontal orthostatic headache. additional clinical symptoms included nausea, vomiting, tinnitus and hearing impairment, mild neck stiffness, and bilateral upper limb numbness. all symptoms worsened with the ortho- static position. neurological examination, routine blood tests, and brain ct scan were normal. a brain mri showed diffuse pachymeningeal enhancement and mild subdural fluid collections. angio-mri was unremarkable. after two months of bed rest, orthostatic headache and tinnitus were still present. at this time, spinal mri and mri myelogra- phy were negative, whereas ct myelography showed left-sided con- trast extravasation (c -c level). csf pressure was not measurable. the patient was treated with autologous ebp ( ml) at the level of l - l . after injection, she remained in the trendelenburg position at approximately ° for hours. she was asymptomatic within hours after ebp. at -month follow-up she was in good health. discussion and conclusions in this case we hypothesize that recovery is due to the fact that ebp, even though injected at the level of the lum- bar spine (i.e., far from the site of csf leakage), may move upward reaching the cervical segments. this is possibly favoured by a pro- longed trendelenburg position. alternatively, ebp may determine an increase in intracranial pressure, which would favour the closure of the everting borders of the dural hole. thus, extradural injection of autol- ogous blood at the level of the cervical spine, where the procedure is difficult to attempt, may not be necessary. reference . ferrante e, savino a, sances g, nappi g ( ) spontaneous intracranial hypotension syndrome: report of twelve cases. headache : – treatment of tension-type headache a. forabosco, f. vecci, t. grandi, s. superbi university of modena and reggio emilia, school of dentistry, modena, italy; e-mail: forabosco.andrea@unimo.it introduction the “tension-type headache” often represents the symp- tomatologic manifestation of temporomandibular disorders. it is fre- quently associated with an occlusal alteration able to produce a mus- cular-articular overload [ ]. patients and methods limitation of the functional mandible’s move- ments, teeth abrasions, or hypertrophy of the mandibular elevator mus- cles often represent the associated symptoms of myogenous pain regarding “tension-type headache” [ ]. the dentist’s aim should be to diagnose and to treat adequately muscular problems originating from the stomatognathic system. to obtain this goal, a michigan splint treat- ment was performed. it is a resin device applied on the maxillary den- tal arch, and is realized by an irreversible hydrocolloid impression of both dental arches of the patient and by a “construction wax-bite”, which indicates the maxillary-mandibular relationship [ ]. the wax-bite’s height was defined to obtain the most relaxed muscular position, and the minimal, symmetric muscular activation was checked by a clinical palpation examination at the established position. fifty patients ( women and men; aged between – years) were selected for this study. inclusive criteria were: ( ) diagnosis of muscu- lar disorders, and ( ) alteration of occlusion or of mandibular move- ments. clinical parameters (maximal opening, degree of masticatory muscle tension, degree of pain during mandibular movements), and surface electromyography (semg) were recorded on days , , and . the electromyography test was performed using surface electrodes placed on the skin corresponding to the maximum projection of the muscle points. the skin was previously cleaned with ethyl alcohol to remove any greasy residues. electrical performance recordings were obtained from both pairs of masseter, anterior temporalis, sternoclei- domastoid, and anterior digastric muscles, both at rest and during func- tion. therapy should resolve problems of hyperactivity or disequilibri- um between the different muscles and restore muscular balance [ ]. all the patients were instructed in proper dental hygienic, and the correct use of the splint. results a remarkable reduction in the clinical parameters recorded at each follow-up was observed in all patients. the semg recordings showed a significant decrease in hyperactivity and a favourable mus- cular balance was restored at each session. discussion and conclusions the “michigan splint” seems to be an efficient device to lessen or eliminate muscular tension related to the “cranio-cervico-mandibular” disorders. “michigan splint” therapy should be part of a multidisciplinary treatment of tension-type headache. references . capurso u ( ) i disordini cranio-mandibolari. fisioterapia spe- ciale odontostomatologica. martina, bologna . mongini f ( ) le cefalee e il dolore facciale. unione tipografico, editrice torinese, torino . palla s ( ) mioartropatie del sistema masticatorio e dolori oro- facciali. rc libri, milano . forabosco a, grippo a, superbi s et al ( ) dossier gnatologia: pazienti con disfunzione dei muscoli masticatori. elettromiografia di superficie. dental cadmos : – chronic headache prevention superficial emg in chronic tension-type headache: follow-up p. tamburro, l. di ianni, g. di meo, g. siconio, p. serra department of aging medicine and sciences, headache centre, asl , chieti, italy; e-mail: ldiianni@interfree.it our study, began in , and continues to follow patients ( women and men) with chronic tension-type headache (ctth) and temporomandibular joint disease. all patients underwent superficial emg of the jaw muscles and neurological examination. patients were divided into groups for different treatments: group was treated with bite and muscle relaxants for month; group with muscular stretching, psychotherapy and muscle relaxants for month; and group with muscle relaxant for months. group showed % reduction of the symptomatology, group % reduction of the symp- tomatology, and group % reduction of the symptomatology. conclusions superficial emg study of jaw muscles is very important in ctth with temporomandibular joint disease. treatment of cases of chronic tension-type headache with acupuncture m. calia, a. caruso, g. schimmenti, m. rotolo, e. scarpuzza u.o.s. of pain therapy, hospital “g.f. ingrassia”, a.u.s.l. n. , palermo, italy; e-mail: matteocalia@libero.it introduction several studies on the treatment of chronic tension-type headache (ctth) with traditional chinese acupuncture have been published, but further studies need to be carried out to verify the valid- ity. the peculiarity of this study was the use of international headache society (ihs) diagnostic criteria in the recruitment of patients. patients and methods the study was conducted on a total of patients (mean age years: males and women) fulfilling ihs criteria for ctth. two parameters were considered: ( ) number of days of headache/month; ( ) number of nonsteroidal anti-inflammatory drugs (nsaids) taken (oral medication)/month. the patients were asked to keep a daily diary for headache and oral nsaids one month before treatment, during the treatment period and one month after the treatment ended. the patients underwent a total of twelve sessions of minutes each. the first eight sessions were weekly, whereas the last four sessions were bi-weekly. the treatment required a period of four months. results the diaries before and after treatment were compared: three of the patients achieved complete remission of symptomatology and no longer took nsaids; four patients experienced a %–- % reduction in headache frequency and the number of times they used nsaids/month; six patients had a %– % reduction in headache attacks; four patients had a %– % reduction; and three patients had no changes. conclusions we believe that the treatment of ctth should be dealt with in a multidisciplinary manner in further studies, i.e., acupuncture, as well as other different techniques (i.e., relaxation training, biofeed- back, etc.), are reasonable alternatives to pharmacological therapy. effects of amitriptyline and intra-oral device in chronic tension-type headache: a clinical and laser-evoked potentials study m. de tommaso, e. shevel, m. guido, d. di venere, g. libro, s. genco, c. monetti, l. losito, m. sardaro, p. livrea neurological and psychiatric sciences department, university of bari, bari, italy; the headache clinic, johannesburg, south africa; odontostomatologic and surgical department, university of bari, italy; e-mail: m.detommaso@neuro.uniba.it introduction we reported that laser-evoked potentials (leps), record- ed at the vertex, were increased in amplitude in chronic tension-type headache (ctth) patients when pericranial sites were stimulated; the amplitude increase was significantly associated with the total tenderness score (tts) [ ]. these findings suggested that pericranial tenderness may be a primary phenomenon that precedes headache and is mediated by a greater cortical, pain-specific hypervigilance. in the present study, we examined clinical and lep features in two groups of ctth patients treated with two different approaches: application of an intra-oral prosthesis, aimed at reducing muscular tenderness, and administration of amitriptyline, acting at the central level. patients and methods eighteen patients suffering from ctth (icdh-ii, ), participated in the study. we performed baseline evaluation of the clinical features and leps in all patients (t ) vs. age- and sex- matched controls; subsequently, patients were randomly assigned to a two-month treatment with amitriptyline or an intra-oral prosthesis. all subjects underwent a recording session with scalp electrodes, placed according to the – international system. the stimulus was a laser pulse generated by co laser; the dorsum of the hand and the cutaneous zones corresponding to pericranial muscles were stimulated. clinical and lep evaluations were performed after treatment (t ). results the late leps, especially the p component, were significant- ly increased in amplitude in the ctth group; the p amplitude was correlated with tts and anxiety levels. both the intra-oral prosthesis and amitriptyline significantly reduced headache frequency. tts was significantly different between the two groups; in fact, it was reduced in the prosthesis-treated group. the amplitude of the p response elicit- ed by stimulation of the pericranial zones showed reduction after amitriptyline treatment. discussion and conclusions overall, the results of this study support pericranial tenderness as a primary phenomenon in chronic tension- type headache: it may initiate a self-outstanding circuit, favoured by central sensitization at the level of the spinal dorsal horn/trigeminal nucleus and cortical nociceptive areas devoted to the attentive and emotive components of pain. interventions at both the peripheral and central level may interrupt this reverberating circuit, improving headache outcome. reference . de tommaso m, libro g, guido m et al ( ) heat pain thresh- olds and cerebral event-related potentials following painful co laser stimulation in chronic tension-type headache. pain ( – ): – botulinum toxin: a placebo controlled trial p. tamburro, l. di ianni, g. di meo department of aging medicine and sciences, headache centre, asl , chieti, italy; e-mail: ldiianni@interfree.it our study began in , and continues to follow a group of patients: treated with botulinum toxin type a (btx-a) and treated with sodium chloride . %. patients had previously tried many prophylactic therapies (ca-agonists, beta-blockers, antiepileptics) without having any significant improvement. the treatments were based on injection of units of btx-a or . cc of sodium chloride . %: into the four frontalis sites; into the two temporalis sites; into superficial sites; and into the glabellar sites. the treatments were performed every months for a year. after months, % of patients treated with btx-a showed a significant reduction in the frequency and severity of migraine attacks. we observed no reduction of the symptomatology in the patients treated with sodium chloride. practically all patients treated with btx-a continued the injections every months and none of them had sec- ondary effects either on muscles or in general. all the patients treat- ed with sodium chloride . % had no secondary effects but they did not continue treatment. conclusions therapy with botulinum toxin is increasingly used in the prophylaxis of migraine with or without aura. generally, it does not have secondary effects. chronic daily headache and medication overuse: comparison between in- and outpatient manage- ment c. vollono, d. ferraro, a. capuano, d. mei, g. della marca, g. di trapani headache centre, ”a. gemelli” hospital, rome, italy; e-mail: lvol@libero.it introduction chronic daily headache (cdh) is an invalidating pathol- ogy affecting %– % of the population. the majority of patients with cdh also overuse acute medication. medication overuse is thought to play an important role in the transformation of episodic headache into chronic headache. furthermore, until the abused medication is with- drawn, prophylactic medication may be ineffective in reducing the headache frequency. objective to compare the efficacy of a detoxification scheme in two groups of patients: the first group was hospitalized for a ten-day peri- od, while the second group was admitted to day hospital daily. patients and methods we studied two groups of patients each, affected by cdh with medication overuse, (> simple analgesics or > triptans/combination medication intake per month for at least three months) without psychiatric comorbidity or opioid/barbiturate overuse. patients underwent a -day treatment scheme consisting of: with- drawal of the overused drugs and administration of dexamethasone ( mg/day iv) and amitriptyline ( mg/day). subsequently, these drugs were tapered and prophylactic treatment, chosen on the basis of the patients’ characteristics, was began. outcome measures were: number of days with headache during treatment, headache index (number of days with headache/total number of days) at and months and anal- gesic intake in the months following detoxification. results headache index and analgesic intake were significantly lower at follow-up as compared to the month before treatment. there was no other significant difference regarding all evaluated parameters between the two groups. conclusions although the sample population is small, our results sug- gest that an outpatient management of cdh with medication overuse is a valid therapeutic option in the absence of conditions requiring hos- pitalization (psychiatric or medical comorbidities, opioid/barbiturate overuse, dehydration). hospitalization, which represents a stressful event for patients, can thus be avoided and management costs reduced. advice alone versus structured detoxification programmes for medication overuse headache (moh): a prospective, randomized, open-label trial in transformed migraine patients with reduced medical needs p. rossi, c. di lorenzo, j. faroni, f. cesarino headache clinic, ini grottaferrata (rome), italy; e-mail: paolo.rossi @aliceposta.it introduction the effectiveness in moh of doctor’s advice alone, without adjunctive pharmacotherapy, has not yet been defined. aim to compare the effectiveness of intensive advice to withdraw the overused medication with the effectiveness of two different structured strategies for patient detoxification. patients and methods one hundred and eight patients diagnosed with probable moh plus migraine participated in the study. exclusion cri- teria were: previous detoxification experiences, co-existent, significant and complicating medical indications, major depression, overuse of opioids, benzodiazepines, and barbiturate-containing agents. the patients were randomized in equal numbers into three different treat- ment groups. group a received only intensive advice to withdraw the overused medication, group b underwent a standard outpatient detoxi- fication programme, and group c underwent a standard in-patient with- drawal programme. withdrawal therapy was considered successful if, after months, the patient had reverted to an episodic pattern of headache and was taking fewer than doses of medication per month. results three patients were excluded because they showed no improvement following withdrawal. sixteen patients dropped out of the study (group a, n= , group b, n= , group c, n= , p> . ). of the subjects who completed the study, the success rates were: group a, %; group b %; and group c, . % (p> . ). in patients with transformed migraine with reduced medical needs and no previous detoxification experience, effective drug withdrawal may be obtained through the giving of advice alone. application of the ichd-ii diagnostic criteria for paediatric headache using a computerized structured record. preliminary results g. mazzotta, b. gallai, f. floridi, m. allegretti, r. d’angelo, f. barbanera, c. olivito, b. pinzo, r. monni juvenile neuropsychiatry unit, university of perugia, perugia, italy; e-mail: mazzogio@unipg.it the actual application, by a computerized structured record, of the current international headache society (ihs) diagnostic criteria in clinical practice has been investigated in adults while data in children are lacking. we tested the computerized record, based on the ichd- ii criteria, by entering and analyzing data reported on the case sheets of consecutive children (range – years) attending our paedi- atric headache centre. the diagnoses reported by the clinician were: migraine without aura (mo) in patients; probable migraine with- out aura (pmo) in ; chronic migraine (cm) in ; migraine with aura (ma) in ; episodic tension-type headache (etth) in ; chronic tension-type headache (ctth) in ; probable episodic ten- sion type headache in ; and non classifiable headache in . concordance between the clinical and the computerized diagnoses was found in of cases examined ( . %). there was absolute agreement in the diagnosis ( %) in subjects with cm and ma and almost complete agreement in those with mo ( . %). in the episodic tension-type headache group the concordance was reached in % of the cases and only % was reached in the proba- ble migraine group. in the remaining types of headache the comput- erized record showed, other than the diagnosis provided by the clin- ician, further probable alternatives. the computerized structured record could be, in selected cases, an improvement for the specialist. further studies are needed to improve the software in order to increase the diagnosis concordance. 	physiopathological aspects of headaches i 	physiopathological aspects of headaches ii 	clinical aspects of headaches i 	clinical aspects of headaches ii 	clinical aspects of headaches iii 	case reports i 	case reports ii 	headache in childhood and adolescence i 	headache in childhood and adolescence ii 	therapeutical choices: the state of the art and future developments 	chronic headache prevention potential of telepresence robots to enhance social connectedness in older adults with dementia: an integrative review of feasibility professor wendy moyle a,b* w.moyle@griffith.edu.au dr urska arnautovska a,c urska.arnautovska@griffithuni.edu.au professor tamara ownsworth a,c t.ownsworth@griffith.edu.au dr cindy j jones a,b c.jones@griffith.edu.au amenzies health institute queensland, griffith university, nathan, brisbane, queensland, australia bschool of nursing and midwifery, nathan campus, griffith university, nathan, brisbane, queensland, australia cschool of applied psychology, mt gravatt campus, griffith university, brisbane, queensland, australia address correspondence to professor wendy moyle, menzies health institute qld, griffith university, . health sciences (n ), kessels road, nathan, brisbane, queensland, , australia. tel: + ; fax: + ; email: w.moyle@griffith.edu.au keywords: older adults, dementia, socially assistive robots, telepresence technology, social connection, social isolation, literature review running title: telepresence robots for people with dementia mailto:w.moyle@griffith.edu.au mailto:urska.arnautovska@griffithuni.edu.au mailto:t.ownsworth@griffith.edu.au mailto:c.jones@griffith.edu.au mailto:w.moyle@griffith.edu.au potential of telepresence robots to enhance social connectedness in older adults with dementia: an integrative review of feasibility abstract background: socially assistive robots are increasingly used as a therapeutic tool for people with dementia as a means to improve quality of life through social connection. this paper presents a mixed-method integrative review of telepresence robots used to improve social connection of people with dementia by enabling real-time communication with their carers. method: a systematic search of medline, proquest, pubmed, scopus, web of science, cinahl, embase, and the cochrane library was conducted to gather available evidence on the use of telepresence robots, specifically videoconferencing, to improve social connectedness, in people with dementia. a narrative synthesis was used to analyse the included studies. results: a review of , records identified four eligible peer-reviewed publications, reporting findings about three different mobile telepresence robots. the study designs included qualitative and mixed-methods approaches, focusing primarily on examining the feasibility and acceptability of the telepresence robots within the context of dementia care. these studies reported both positive outcomes of using telepresence robots to connect people with dementia to others, as well as barriers, such as a lack of experience in using a robot and technological issues. conclusion: although limited, the current literature suggests that telepresence robots have potential utility for improving social connectedness of people with dementia and their carers. however, more systematic feasibility studies are needed to inform the development of telepresence robots followed by clinical trials to establish efficacy within dementia care. keywords: dementia, socially assistive robots, telepresence technology, social connection, social isolation, literature review introduction according to the world health organization (who), in there were around million people worldwide with a diagnosis of dementia (who, ). with no cure on the horizon, much of the care provision focuses on maintaining quality of life (qol) for people with dementia. the greatest threat to maintenance of qol are the behavioural and psychological symptoms of dementia (bpsd), which include agitation, anxiety, apathy, depression and hallucinations. bpsd can be difficult to manage and, importantly, reduce opportunities for meaningful social connections. in particular, apathy diminishes the amount and reciprocity of interactions between people with dementia and their families (levenson et al., ). furthermore, people with dementia report their concerns about losing social connections linked to their pre-dementia identity (bunn et al., ). having a diagnosis of dementia can also have a profound impact on relationships placing a person at risk of loneliness and social isolation (moyle et al., ). indeed, a recent report by alzheimer’s australia ( ) found that % of people with dementia believed that families and others avoid spending time with them as a result of their dementia, and % wished they had more social contact with people in the community. a promising avenue for improving qol of people with dementia and preventing and slowing bpsd is by facilitating positive and meaningful social connection or engagement with others (huxhold et al., ). the need to belong and be connected with others is intrinsic to mental health and well-being. loss of social connection is linked to more rapid cognitive decline and an increased risk of dementia (holwerda et al., ). one means to connect people with dementia to friends and family is through the use of socially assistive robots (sar) with a videoconference function, also known as telepresence robots (kachouie et al., ). socially assistive robots the field of sar has had problems with inconsistencies in terminology use within the literature and this has created problems for users and researchers. in recent years authors have been encouraged to provide clear definitions of products under investigation and to explain the field and types of robots they are exploring. sar is a subfield of robotics that encompasses social and service robotics, rehabilitation robotics and human-robotic interaction. sar aim to assist human users with various tasks and to engage in lifelike social behaviour that allows them to assist with social interaction (feil-seifer et al., ). they can assist humans of any age, although their use has often been with older people, and those with physical and cognitive impairments. sar can serve a therapeutic function in human-robot interaction (e.g., stroke rehabilitation), or they can assist human-to-human interactions by playing the role of a communication interface between people, their smart home and the external world, including health professionals (feil-seifer et al., ). the recognised importance of technologies to foster social connection has resulted in the development of a number of robot types to help older people maintain relationships. robinson et al. ( ) explored and critiqued different types of robots and their impact on health and social care. they identified several types of sar including healthcare robots that aim to promote or monitor health in order to prevent further health decline. they acknowledged the importance of rehabilitative robots and their role in being physically assistive systems rather than communicative systems. rehabilitative robots perform physical tasks or make tasks easier for people with physical function disabilities. social robots were classified as being both service robots and companion robots. these types of robots are also called emotional robots as they are designed to elicit a therapeutic emotional response. service robots provide assistance with mobility, household tasks and health monitoring. in contrast, companion robots act as a companion and do not assist with tasks, but rather engage a person with dementia in for example, robotic pet therapy. however, some robots provide both companionship and assistance and the development of new types of robots continues as the field of robotics advances. such developments includes telepresence robots. telepresence robots more recently, engineers have moved towards the creation of generic platforms that can be programed to undertake various tasks that focus on improving qol for older people. as a result, they have created telepresence robots that act as a conduit for socialisation (kristoffersson et al., ). these robots are usually free-standing, wheel-based and feature a videoconferencing system that includes a web-camera, moveable lcd screen, speaker and microphone. an important quality of such systems is mobility, which involves moving or steering the robot around the space, either from a remote location by a person or by means of space-mapping functions embedded in an autonomously- or semi-autonomously-operated robot. as such, through a sense of shared space, telepresence robots allow a three-dimensional human interaction, which is unique to mobile sar with a videoconferencing function (compared to technologies with a set screen, such as computers or tablets). this means that with assistance of telepresence robots, companions in remote locations can virtually see into and move around in another space through a two-way camera using a pan and tilt of the video display operated by software on a remote user’s computer. in addition to advancements in social connection the use of telepresence systems can also contribute to medical assessment of older people in geographically isolated communities. videoconferencing and video consultation are well-accepted among older users and their healthcare professionals (ramos-rios et al., ) and videoconferencing for telemedicine purposes has been shown to save time and money (martin-khan et al. ). furthermore, videoconferencing has been found to be feasible and advantageous when used for supervision and clinical governance purposes among dementia service staff in regional and remote areas (doyle et al., ). the service staff reported improvement in staff and family carers’ stress and greater confidence in managing clients with bpsd. however, in spite of advancements on telepresence robots being made the evidence on the feasibility and acceptability of telepresence robots for the purpose of encouraging social connectedness between people with dementia and their carers is lacking. indeed, the use of videoconferencing for therapeutic purposes (e.g., enhancing social connectedness and reducing older adults’ isolation) in people with dementia has only become the focus of empirical investigations more recently (moyle et al., ). perry and beyer ( ) recognised the potential of technology to enhance social connection of people with dementia through the development of social networking applications. however, they also cautioned that the already limited social contact enjoyed by people with dementia, or those with intellectual disabilities, should not be reduced further by technology (perry and beyer, ). a review of technologies for alleviating social isolation also found that information and communication technologies (ict) can improve social well-being more than non- ict technologies (pinto-bruno et al., ). however, pinto-bruno et al. ( ) also acknowledged that without extensive experience in the use of technologies some carers and people with dementia will be challenged by the introduction of new technologies. the importance and aims of this review the development of sar for people with cognitive impairment, such as dementia, has been rising sharply over the past two decades. such systems have been recognised as potentially valuable by healthcare professionals, formal and informal carers, and people living with dementia themselves (mehrabian et al., ; robinson et al., ). however, their feasibility and usefulness, especially for people with dementia, has not been well established. existing reviews of assistive technologies in the care of people with dementia have typically focused on those providing cognitive stimulation or training (garcía-casal et al., ; d'onofrio et al., ), social assistance (bemelmans et al., ), or included sar that enable social interaction with a robot, but not with another human (mordoch et al., ). the only narrative review which included mobile robotic telepresence systems designed to enable human social interaction (kristoffersson et al., ), explored the use of such robots across all ages, rather than specifically among people with dementia. the broad objective of this integrative review was to assess the feasibility of interventions, including sar that are aimed at facilitating social connectedness in people with dementia and their carers. a specific aim was to examine whether sar that include a videoconferencing function can support social connection between people with dementia and their carers, and thereby, have the potential to reduce social isolation and improve well-being of people with dementia. given that research on telepresence robots that enable social interaction through a videoconferencing system is a new, emerging topic (kristoffersson et al., ), a synthesis of existing knowledge from qualitative and quantitative studies seems warranted (torraco, ). the inclusion of diverse methodologies, which is characteristic of an integrative review method (whittemore and knafl, ), can provide a more holistic understanding of the current evidence and highlight the complexity of issues pertinent to the use of telepresence robots within dementia care. in addition, the integration of different types of evidence allows for the identification of studies (e.g., non-randomised and qualitative), which may have been missed using a systematic review method. by conducting an integrative review, however, we also aimed to identify the factors that may affect the acceptability of telepresence technologies for people with dementia and their carers. methods search strategy articles were identified through systematic electronic searches using medline, proquest, pubmed, scopus, web of science, cinahl, embase, and the cochrane library. keyword searching was performed with the following terms: (dementia or alzheimer* or “cognitive impair*”) and (older or elder* or senior or geriatric*) and (robot* or “assist* technology” or telecare or tele-care or telehealth or tele-health or “information communication” or “information technol*” or “welfare technol*” or videoconferenc* or video-conferenc*) and (care or support or intervention or assistance or “social communication” or “social contact” or “social network” or “social support” or interaction or company or engagement or companionship). the search was limited to english language, and where applicable, to source (i.e., journals and conference proceedings) and document type (i.e., article, conference paper, and article in press). other document types, such as reviews, editorials, letters, position statements, and conference abstracts, were excluded. in addition, in databases that allow searching for subject headings (i.e., medline, pubmed, cinahl and embase) keyword equivalent headings, including dementia, videoconferencing and robotics, were used. full electronic search strategies for the two databases which yielded the most results (i.e., scopus and medline) are presented in the appendix. a hand search of reference lists of identified articles was also conducted to identify any other potentially relevant articles. in addition, we searched grey literature sources, including google, google scholar, websites of research groups involved in robot technology, such as excite (active and assisted living programme, ), as well as websites reporting on specific robot types (giraff technologies ab, ), for any additional records. the literature search was not restricted to publication year and was conducted in march . inclusion and exclusion criteria the review assessed qualitative and quantitative studies reporting on the outcomes of telepresence robots designed to facilitate social connection in older adults with dementia. participants were required to be diagnosed with dementia according to the diagnostic and statistical manual of mental disorders, editions iv and v (american psychiatric association, ) or icd- (world health organization, ). the devices included were sar, which, following the classification of assistive robots by mayer et al. ( ), comprised of service robots and companion robots. while the interventions under consideration included both categories, we focused on telepresence robots that aim to promote real-time communication and social contact with another human, using a computer screen as an interface. telepresence robots that enable multiple tasks, among which one of them was the promotion of social contact with a person experiencing dementia, were also included. while the focus was primarily on people with dementia, the effects on formal and informal carers were considered as well. the inclusion criteria were as follows: . studies including people with a diagnosis of dementia (all types of dementia were included), which may also include their carers, such as family members and healthcare professionals. in samples with mixed diagnostic groups (e.g., people with dementia and those with mild cognitive impairment [mci]), participants with dementia must have represented at least % of the clinical sample. . empirical studies that used telepresence robots in the context of dementia care, including descriptive, case-control, before and after studies, and randomised controlled trials (rcts). no requirements for the number of subjects was specified. . studies reporting results based on qualitative, quantitative, or mixed-method studies. the exclusion criteria were: . studies that did not assess the effects of intervention on the users (e.g., studies on architecture and implementation of devices). . interventions including devices or robots without a videoconference interface (e.g., telephones), devices that do not enable a verbal and visual interaction with another human (e.g., robotic animals), or non-mobile devices with a set screen (e.g., computers). . interventions including telepresence robots that were not designed to promote social connectedness (e.g., those aimed at supporting cognitive problems). data extraction and synthesis the search results from each database were merged using a referencing program, with duplicates excluded. abstracts and full texts were added automatically or manually to the records. records were screened based on abstracts and titles, with reasons for exclusion recorded. full texts of the remaining records were reviewed by two independent reviewers to establish eligibility. the inter- rater agreement was high (κ = . , p < . ) and any disagreement was resolved through discussion. once consensus was reached on the articles to be included in the review, data were extracted from each of them on study method (research approach), participants (total number, age, gender, diagnostic characteristics), study aim, technology type (characteristics of the robot), setting and user trials (research context, intervention and trial frequency and duration, description of intervention and control conditions if applicable), and key findings (themes identified and significant effects reported). outcomes related to the use of telepresence robots were identified for each study, including outcome data pertaining to people with dementia and their formal or informal carers. a narrative synthesis of the findings was then conducted, which considered the context of the intervention, along with any reported findings that identified the perceptions and/or reactions of people with dementia or their carers towards a telepresence robot, or the findings related to the quality of the robot-mediated videoconference experience between users. results one thousand and thirty-five records were identified, which was reduced to after duplicates were excluded (see figure ). an additional records were excluded by title and abstract, with the most frequent reasons for exclusion being the use of other technological devices such as telephones and sensors (n = ), other types of records such as a study protocol, letter, and commentary (n = ), and use of videoconferencing for telehealth purposes such as cognitive assessment (n = ) rather than for social connection. this resulted in records for full-text screening, which was conducted by ua and wm who independently reviewed selected records, based on the inclusion and exclusion criteria. to assist with determining eligibility of three records, the first authors were contacted to obtain more information, such as details about the diagnostic characteristics of participants and whether the robot enabled video conferencing and if this feature was used in the intervention. the screening process resulted in four publications (two journal articles and two full conference articles) eligible for the current review. study characteristics the four publications included in this review described findings from three independent studies. two publications (gross et al., ; schroeter et al., ) reported outcomes of the same figure . flowchart of the search process. intervention, and with slight differences in the sample sizes. the study by gross et al. ( ) reported data from four couples (including three people with dementia), while schroeter et al. ( ) reported updated data from five couples and one single person (including four people with dementia). this study was conducted in the netherlands, while the remaining studies were conducted in australia (moyle et al., ) and new zealand (robinson et al., ). a summary of the study characteristics, including key findings of each study, is presented in table . [insert table near here] study design all studies employed a qualitative or mixed-methods research approach, with interviews involving people with dementia and their carers being the main data collection method, followed by video observations. in two studies (moyle et al., ; robinson et al., ) that used interviews, qualitative data was analysed with a thematic analysis approach, while observation sheets (for secondary users) and semi-structured diaries (for primary users) were used to inform the discussions during interview sessions by gross et al. ( ) and schroeter et al. ( ). while the majority of studies focused on the users’ experience of a specific system, robinson et al. ( ) compared relatives’ and staff members’ experiences in using the guide robot (human height robot capable of videoconferencing) with paro, a robotic harp seal companion robot. none of the studies specified the eligibility criteria, while the sample size and participants’ characteristics were described in all of them. statistical comparison of intervention effects was conducted only by robinson et al. ( ) who compared observation measures (e.g., the amount of interaction time) between the robots. sample characteristics a total of participants with dementia ( males; mean age . ± . years) and with mild cognitive impairment ( male; mean age . ± . years) were included in three independent studies. in addition, all studies included participants’ family members (n = ) and two studies (robinson et al., ; moyle et al., ) also considered perspectives of staff members (n = ). most studies included participants in the mild (gross et al., ; schroeter et al., ) or mild-moderate stage of dementia (moyle et al., ). the severity of dementia was not specified in one study (robinson et al., ). robot characteristics the studies in the review reported outcomes from three different systems (see table for their descriptions). these systems included an autonomously-operated, socially assistive home companionable robot (gross et al., ; schroeter et al., ), the guide robot (robinson et al., ), and a remotely-guided mobile telepresence robot giraff (moyle et al., ). all systems were designed specifically for older adults. while the main function of giraff (moyle et al., ) was to promote social interaction between users through a video call, the companionable robot (gross et al., ; schroeter et al., ) and guide robot (robinson et al., ) also included various other functions, such as cognitive stimulation exercises, medicine and task reminders (gross et al., ; schroeter et al., ), entertainment and activity suggestions (gross et al., ; schroeter et al., ; robinson et al., ), and vital signs measurement (robinson et al., ). intervention findings the studies differed in the amount of exposure and interaction with each robot, ranging from minute sessions (robinson et al., ) to days per person (gross et al., ; schroeter et al., ). where several functions were evaluated, we reported the findings pertaining to the use of videoconferencing for social connection. the efficacy of a robot system that allowed videoconferencing relative to paro, an interactive robot harp seal, was evaluated by robinson et al. ( ) in one residential facility, involving older people with dementia and their relatives (n = ), and five staff members. during a one-hour group session, paro and guide were introduced to residents and their family members (in a random order) in a communal area of the facility. staff took part in individual sessions. in all sessions, the researchers spent five minutes introducing and demonstrating the robots, with participants then encouraged to interact with both robots for a further - minutes. analysis of video observation showed that, during the session, residents used guide longer than paro, which was attributed to a longer time being needed to explain and demonstrate guide’s functions. in addition, while more residents were observed to talk, touch, and smile at paro than guide (p < . ), more residents looked at guide during the overall session and spoke about it unprompted to others in the facility when compared to paro (p < . ). in post-session interviews, family members and staff considered guide to be ‘unsuitable for people with dementia’ (p ), with the messages displayed on the robot’s screen a struggle for those that have lost the ability to read. however, many relatives complimented guide for its ability to personalise activities to each person and considered it useful in terms of providing several functions, among which entertainment (e.g., playing music, showing photographs and offering games) was perceived the most advantageous. reported in two conference papers (gross et al., ; schroeter et al., ), a multi- functional robotic system, called companionable, was evaluated within the context of a smart home environment. in both studies, participants received an initial demonstration using the robotic system, after which they were left to engage with the robot as they wished. in the first publication, gross et al. ( ) reported findings of the user trials with four couples, including people with early stage dementia (n = ), a person with mci, and their partners (n = ). they found that the experience of using companionable resulted in a change from negative, stereotypical ideas about robots to more positive attitudes, perceiving the robotic system as a valuable addition to everyday life and existing care. quick acceptance of companionable was evident also from participants attributing it human characteristics (e.g., giving it a name and commenting on its mood). the participants appreciated that companionable was able to provide stimulation through cognitive training and reminded them of activities, such as eating, drinking, taking medications, going out, and calling someone via videoconference. the fact that activity suggestions and reminders were initiated by the robot itself was considered an advantage to other types of technology, such as tablets and computers, which do not possess this level of autonomy. in a subsequent publication, schroeter et al. ( ) evaluated the functionality of companionable with an additional couple and one single person. people with dementia (n = ) and mci (n = ) and their family carers reported that the more functions (e.g., locating the user, suggestions, stimulations and encouragements to stay active or, to make a video call to family or friends, or to do cognitive training) are robot-initiated, the more enjoyable they found it to use. although interactions with the robot were also user-initiated (e.g., consulting the today screen, asking the robot to follow or manage the items on the to-do list) and externally-initiated (e.g., receiving incoming video calls, a secondary user adding and removing items on the agenda), the ability of companionable to act autonomously and self-initiate a wide range of functions seemed the most appealing to the users. indeed, while people with dementia rated highly their enjoyment of using the robot, carers rated highly the usefulness, especially its ability to give reminders, which reduced their burden as carers. the study by moyle et al. ( ) was the only one to focus on the feasibility of a telepresence videoconferencing system for facilitating communication between a person with dementia (n = ) in a long-term care and their family member (n = ) in a remote location. all calls were made from the family member’s home and received in the facility, either in the residents’ rooms, or in a quiet communal area, or closed-off room. a member of the research team set-up giraff before each scheduled call at the facility. overall, residents, their family members and staff (n = ) were generally accepting of the mobile telepresence robot called giraff (moyle et al., ). this was established by the fact that none of the residents demonstrated adverse reactions to giraff and all dyads actively participated in and maintained video conversations. the average proportion of time in which residents were engaged (i.e., being visually alert and verbally engaged with the person via the telepresence robot) was % (sd = %) of the call duration. residents exhibited positive emotions particularly at the start and towards the end of the call and family members reported enjoyment when connecting with their relative. family members also identified the value of the robot for enabling them to see and speak with their relative without needing to travel long distances. in addition, one family member who lived internationally also suggested that videoconferencing would be used between family members and staff, while staff highlighted the possibility to use giraff for telehealth consultations. discussion this review identified and summarised the methodology and findings of four studies that examined the use of videoconferencing through telepresence robots in older adults with dementia and their formal and informal carers. three different systems were used, which provided a range of functions, including cognitive stimulation and training, medications and task management, activities for entertaining, vital signs measurement, and teleconsultation with healthcare professionals. only one system (i.e., the remotely-controlled mobile robot giraff) was designed specifically for videoconferencing purposes to facilitate social connectedness between a person with dementia and their family members (moyle et al., ). all of the reviewed studies reported positive aspects of using videoconferencing to facilitate social connection between a person with dementia and their family and friends (see table ). however, the existing evidence on the use of telepresence technology in the care of people with dementia is limited, based predominately on feasibility and pilot studies including small samples, no control groups and a lack of objective outcome measures or statistical comparisons of intervention effects. in addition, the majority of studies did not report eligibility criteria for selection of their participants, which raises concerns about the representativeness of sampling (e.g., possible bias towards selecting participants based on their familiarity with technology). it is important to acknowledge that the aim of the current review was not to assess the effectiveness of existing interventions involving the use of telepresence technology for people with dementia, but rather to assess whether telepresence technology is a feasible service delivery method for improving social connectedness with their informal carers. given that the use of videoconferencing as a more therapeutic function (e.g., reducing the incidence of challenging behaviours and social isolation) has only started to be used in practice more recently, it seems important to learn from the existing experience about telepresence robots in progressing this field further. therefore, in spite of the paucity of studies included in this review and their methodological limitations, the current review offers some important points to inform the development and implementation of future interventions using sar with videoconferencing in the context of dementia care. these points include the importance of the simplicity of a robot design, the robot’s ability to initiate interactions with users autonomously, and the opportunity to foster positive reactions in people with dementia and their family members through the use of videoconferencing. specifically, it appears that the ability of a robot to function autonomously (interactions with users are robot-initiated) or semi-autonomously (interactions are user- or externally-initiated) presents one of the key advantages of telepresence robots. indeed, robinson et al. ( ) reported that staff and relatives considered the guide robot too complicated for people with dementia to use, particularly for those with language impairments, and thus, thought they would find it challenging to initiate a videoconference. on the other hand, in the netherlands study (gross et al., ; schroeter et al., ), it was found that the ability of a robot to provide appropriate suggestions, such as establishing a video call with a friend or family member, and to physically move around the space and come to them were among the most appreciated. these findings highlight the importance of mobility as one of the unique functions of telepresence robots, which distinguishes them from other technologies devices, such as tablets and computers. for example, in a study by mehrabian et al. ( ), people with dementia and those with mci evaluated a computer-based telecare system which included various functions, including videoconferencing. while participants expressed an interest in using the system in order to have a videoconference with family and friends, qualitative data showed that many people with dementia also expressed a preference for using a telephone, which they were used to. however, in the study by gross et al. ( ), participants praised the companionable robot specifically for its self-initiative functions, including the robot moving around the space and locating the user. this suggests that some operational difficulties can be overcome by designing telepresence robots that possess a certain degree of autonomy, or alternatively, are mobile and can be remotely guided by a carer in order to simplify its use for people with cognitive impairments. reminders or prompts received from a robot may be useful because prompting was seen as beneficial by older adults with dementia and their carers particularly for complex and unfamiliar activities, such as initiating a video call (wang et al., ). mobile telepresence robots offer the opportunity to further enhance communication and a means for remote carers to oversee the person and the environment in which the person with dementia is living (moyle et al. ). importantly, none of the studies included in this review raised concerns about potential risks of a moving robot, such as it falling over near or on the person with dementia. whilst beyond the remit of this review, these concerns are, perhaps, testament to the focus of these functional features of the robots during the design stage. overall, the reviewed studies reported favourable experiences of using videoconferencing in the context of dementia care, which was characterised by people with dementia exhibiting positive emotions as well as good visual and verbal engagement during the call (moyle et al., ). positive acceptance of telepresence systems is consistent with prior studies evaluating videoconferencing programs for health purposes (ramos-rios et al., ) where users and their healthcare providers reported acceptance and satisfaction with such programs. while stable and consistent engagement during the video call is indicative of a good social connection, the outcome measures used in the reviewed studies preclude conclusions to be made about the benefits of videoconferencing on social connectedness of people with dementia. although the existing results demonstrating the feasibility of telepresence robots for social connection purposes are promising, one recent study that used an assistive robot to help older adults with dementia to perform everyday activities also highlighted concerns that a robot may decrease social contact and in some aspects, replace the carer’s role (wang et al., ). indeed, some studies in this review also identified reservations of people with dementia and their family members (gross et al., ) in using telepresence robots. these reservations were related to a lack of experience in using such a system and being accustomed to other modes of communication, such as a telephone. yet, the findings also reported by gross et al. ( ), where attitudes towards robot systems became more positive within a day of use, corroborates a recent review on the use of ict technologies among older adults with dementia (pinto-bruno et al., ). this review highlighted that experience is necessary for users to become more accepting of new technologies. although society may be accepting of new technologies, their uptake of robots is thought to be influenced by robots frequently not meeting the needs of end users (bemelmans et al., ). the co-design of technologies whereby end users and their developers work side by side in the design of the robot and the robotic tasks will help to address this problem. nevertheless, the benefits of telepresence systems, particularly for reducing isolation and supporting social interactions, are expected to outweigh any technical issues identified in the current review as barriers to using videoconferencing. as argued by tsai et al. ( ), the value of telepresence is in enabling a sense of shared space among the users through a three-dimensional human interaction, which is an advantage over traditional modes of communication without the possibility for face-to-face conversation. this is of particular importance in the care of people with severe cognitive impairment who may not recognise family members’ voice when using telephone only for communication. limitations the review is limited by the small number of studies, compounded by the preliminary nature of the methodology of these studies. the lack of objectively measured outcomes and controlled trials, along with a heterogeneous nature of outcomes demonstrating a robot’s feasibility within dementia care, undermined the available evidence and precludes from drawing reliable conclusions about the potential of telepresence robots to actually improve social connection between a person with dementia and their carers. in addition, due to the preliminary nature of the research in this field—which reflects the early stage of development of sar—it was not appropriate to rate the methodological quality of included studies according to formal criteria (e.g., tong et al., ). finally, the studies in the review are limited to participants with early to mid-stage dementia resulting in no understanding of whether such robots could have an impact on those with more severe communication and cognitive impairments. as argued by sävenstedt et al. ( ), cognitive impairment, in particular severe cognitive impairment may in some cases undermine a person’s ability to participate in research and to provide a valid account of their experience. however, evaluating the effects of telepresence robots on people in the mild- and mild-moderate stage of dementia may provide valuable insights into the possible benefits of telepresence among those in later stages of dementia. implications prior reviews demonstrate that there is a range of healthcare robots used in the context of older persons or specifically within dementia care (kachouie et al., ; mordoch et al., ). however, sar designed for service or companionship purposes have become the subject of research investigation only recently. given that people with dementia are at risk of social isolation (moyle et al., ), the telepresence robots that allow videoconference calls with family may be particularly useful in helping to maintain people with dementia for longer in the community. the studies in the current review show that the empirical research on telepresence robots which enable videoconferencing between a person with dementia and their family members is still in its infancy. further research, adopting more rigorous research designs, such as cross-sectional studies and rcts with objective measures, is therefore needed to determine the benefits of telepresence robots for people with dementia and their carers. in addition, there is a need to investigate the long-term effectiveness of telepresence robots on well-being of the users. conclusion to date, there has been scant evidence on the suitability of sar that enable videoconferencing calls with family members, as a way of enhancing communication and social connectedness among people with dementia. preliminary evidence from four studies shows that such novel technologies are generally feasible for supporting social interactions between people with dementia and their carers. however, the methodologies used in these studies limits our understanding of whether telepresence robots can, indeed, improve social connections for people with dementia. in order to improve the evidence-base that could inform the development of sar, which may have the potential to improve qol among people with dementia, more controlled trials investigating the clinical efficacy of telepresence robots that allow videoconferencing among people with dementia and their carers are needed. conflict of interest none. description of author’s roles study concept and design: wm & ua. database search and analysis: ua. interpretation of data: wm & ua. drafting of the manuscript: ua & wm critical revision of the manuscript: wm, ua, to, cj. all the authors read and approved the final version of the manuscript. notes the mean age of participants with dementia included in the reviewed studies was calculated based on reported individual or average ages. however, robinson et al. 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( ). the integrative review: updated methodology. journal of advanced nursing, , - . world health organization ( ). the icd- classification of mental and behavioural disorders: clinical descriptions and diagnostic guidelines, geneva, world health organization. world health organization ( ). facts on dementia [online]. who. available: http://www.who.int/features/factfiles/dementia/en/ [accessed april ]. mpa .. molecular markers for novel therapeutic strategies in pancreatic endocrine tumors judith a. gilbert, ms,* laura j. adhikari, md,Þ ricardo v. lloyd, md, phd,þ thorvardur r. halfdanarson, md,§ michael h. muders, md,|| and matthew m. ames, phd* objectives: pancreatic endocrine tumors (pets) share numerous fea- tures with gastrointestinal neuroendocrine (carcinoid) tumors. targets of novel therapeutic strategies previously assessed in carcinoid tumors were analyzed in pets ( cases). methods: activating mutations in egfr, kit, and pdgfra and non- response mutations in kras were evaluated. copy number of egfr and her- /neu was quantified by fluorescence in situ hybridization. expression of egfr, pdgfra, vegfr , tgfbr , hsp , sstr a, sstr , igf r, mtor, and mgmtwas measured immunohistochemically. results: elevated egfr copy number was found in % of cases but no kras nonresponse mutations. vegfr , tgfbr , pdgfra, sstr , sstr a, and igf r exhibited the highest levels of expression in the largest percentages of pets. anticancer drugs bms- (selective for igf r/ir), -(allylamino)- -demethoxygeldanamycin( -aag,targetinghsp ),andaxitinib(directed toward vegfr - /pdgfra-b/kit) induced growth inhibition of human qgp- petcellswithic values (nm) of , , and , respectively. at growth-inhibiting concentrations, bms- inhibited igf r phosphorylation; -aag induced loss of egfr, igf r, and vegfr ; and axitinib increased p waf /cip (cdkn a) expression without inhi- biting vegfr phosphorylation. conclusions: results encourage further research into multidrug strate- gies incorporating inhibitors targeting igf r or hsp and into studies of axitinib combined with conventional chemotherapeutics toxic to tumor cells in persistent growth arrest. key words: pancreatic endocrine tumors, molecular analysis (pancreas ; : y ) pancreatic endocrine tumors (pets), including islet cell carci-nomas, account for % to % of all pancreatic cancers. an identifying characteristic of some pets is their overproduction of polypeptide hormones (eg, gastrin, glucagon, insulin, somato- statin, or vasoactive intestinal peptide); these tumors are classified as functional or nonfunctional based on whether their excessive polypeptide synthesis induces clinical symptoms of hormonal syndromes. an analysis of cases of pets in the surveillance, epidemiology, and end results (seer) database ( y ) indicates that, despite the categorization of this neoplasm as an indolent tumor, the median overall survival of patients with meta- static disease is only months. patients seen at centers special- izing in the treatment of neuroendocrine tumors seem to have superior survival when compared with patients in population- based databases like the seer registry. complete surgical re- section is the most successful treatment for patients with pets; however, most patients present with advanced stages of dis- ease, for which few current treatment options yield high tumor regression rates. somatostatin therapy can ameliorate clinical symptoms and perhaps induce tumor growth stabilization (re- view modlin et al ), and in recent phase iii trials, mtor inhib- itor everolimus and tyrosine kinase inhibitor (tki) sunitinib improved progression-free survival , ; however, novel thera- peutic strategies exhibiting increased antitumor activity would be beneficial. gastrointestinal neuroendocrine (carcinoid) tumors and pancreatic endocrine tumors share a number of characteristics, including neuroendocrine properties (originating from cells of the diffuse neuroendocrine system), certain ultrastructural features (such as cytoplasmic dense-core secretory granules), and similar biomarker expression (eg, chromogranin, synapto- physin, and keratin). both malignancies can be associated with clinical syndromes induced by tumor overproduction of bio- active peptides or amines which serve as a diagnostic marker for the functioning gastroenteropancreatic endocrine tumor, for example, elevated levels in urine of serotonin catabolite -hiaa for carcinoid tumors, serum insulin for insulinoma pets, serum gastrin for gastrinoma pets, and serum glucagon for glucago- noma pets. patients with carcinoid tumors commonly present at advanced stages for which few treatment options are available; therefore, we recently evaluated a heterogeneous collection of carcinoid tumors for growth factor receptors and down- stream effectors and regulators targeted by protein kinase inhibitors and/or antibodies under development as anticancer therapeutics in other forms of cancer. the results were supportive of further research into targeting hsp , igf r, and egfr for develop- ment of new therapeutic strategies for some carcinoid tumors. owing to the similarities shared by gastroenteropancreatic endocrine tumors, the present study investigated in pets the genetic abnormalities and protein expression of growth factor receptors and downstream regulators examined earlier in carci- noid tumors. the genetic abnormalities analyzed were biomar- kers of response to targeted therapeutics developed for other cancers, including activating mutations in egfr exons , , and and high egfr copy number by fluorescence in situ hybridization (fish), the former a marker for response to anti- egfr tki gefitinib in nonysmall-cell lung cancer, , and the latter a biomarker predictive of sensitivity to gefitinib in non- small-cell lung cancer , and to anti-egfr monoclonal anti- bodies cetuximab and panitumumab in colorectal cancer. y original article pancreas & volume , number , april www.pancreasjournal.com from the departments of *molecular pharmacology and experimental thera- peutics, †laboratory medicine and pathology, mayo clinic, rochester, mn; ‡university of wisconsin school of medicine, madison, wi; §depart- ment of internal medicine, university of iowa hospitals and clinics, iowa city, ia; and ||institute of pathology, university hospital carl gustav carus, dresden, germany. received for publication may , ; accepted july , . reprints: matthew m. ames, phd, department of molecular pharmacology and experimental therapeutics, gonda , mayo clinic, first st sw, rochester, mn (e-mail: ames.matthew@mayo.edu). this study received support from the mayo comprehensive cancer center grant (ca ). the mayo clinic spore in pancreatic cancer grant (p ca ) provided funding for construction of the pet tma, including salary support (m.h.m.). the authors declare no conflicts of interest. supplemental digital contents are available for this article. direct url citations appear in the printed text and are provided in the html and pdf versions of this article on the journal’s web site (www.pancreasjournal.com). copyright * by lippincott williams & wilkins copyright © lippincott williams & wilkins. unauthorized reproduction of this article is prohibited. http://links.lww.com/mpa/a mutations in kras codons and were assessed as markers for nonresponse to anti-egfr therapy, correlating with lack of sensitivity to cetuximab y and panitumumab in colorectal cancer and to tkis gefitinib and erlotinib in lung cancer. y high her- /neu copy number was measured by fish as a bio- marker predicting response to anti-her monoclonal antibody trastuzumab in breast cancer. finally, mutations in kit exons , , , and and in pdgfra exons , , and were analyzed owing to association with sensitivity to tki imatinib in gastrointestinal stromal tumors. , the protein expression analyzed was that of growth factor receptors and downstream effectors and regulators, as measured by immunohistochemistry (ihc). immunohistochemical expres- sion in pets of the common therapeutic targets somatostatin receptors sstr a and sstr was compared with that of egfr, pdgfra, vegfr , tgfbr , hsp , igf r, and mtor. furthermore, the immunohistochemical absence of the demethy- lating enzyme mgmt was measured as a marker for response of pets to the dna-methylating chemotherapeutic temozolomide. finally, follow-up in vitro studies were performed in qgp- cells, the sole well-established pet cell line, to measure the effect of therapeutics targeting molecular markers that were strongly or moderately strongly expressed immunohistochemically in pets (vegfr , pdgfra, igf r, and hsp ) and a biomarker with elevated gene copy number by fish (egfr). the effects on qgp- cells of the following anticancer drugs were compared: tkis axitinib (selective for vegfr - /pdgfra-b/kit), suni- tinib (targeting q receptor tyrosine kinases including vegfr - / pdgfra-b), bms- (specific for igf r/ir), and gefitinib (targeting egfr), as well as hsp inhibitor -(allylamino)- - demethoxygeldanamycin ( -aag). we report here a multifaceted study based on mutational, gene copy number, immunohistochemical, and in vitro analyses, which assessed biomarkers for novel therapeutic strategies in a collection of primary and metastatic pets, and compared the results with data obtained from neuroendocrine (carcinoid) tumors. this work was presented in preliminary form at the th annual meeting of the united states and canadian acad- emy of pathology in february . materials and methods patient samples forty-four patients were identified undergoing surgery at mayo clinic between and for pets. all cases had accessible pathology slides as well as formalin-fixed, paraffin- embedded tumor blocks, and most had flash-frozen surgical spe- cimens available for analysis. before inclusion of a case in this study, an hematoxylin and eosinystained slide from each tumor block associated with the case was reviewed (m.h.m. and r.v.l.) to confirm the pet diagnosis. written research authoriza- tion was obtained from all patients for this study, as well as mayo clinic institutional review board approval. tissue microarray construction a tissue microarray (tma) was constructed by the tissue and cell molecular analysis shared resource, mayo clinic, with a beecher ata- automated arrayer (sun prairie, wi). from cases, primary and metastatic pets were selected. the most characteristic area from each tumor was circled on an hematoxylin and eosin slide, and triplicate . -mm cores were re- moved from the corresponding area in the associated formalin- fixed, paraffin-embedded tissue block and placed into a single recipient paraffin block. all of the tumor samples selected for constructing the tma are listed, by case, in supplementary table (supplemental digital content , http://links.lww.com/mpa/a ). immunohistochemical analysis sections ( hm) of the pet tmawere analyzed by ihc for egfr, pdgfra, vegfr , mtor, igf r, hsp , tgfbr , mgmt, sstr a, and sstr . immunohistochemical staining was performed by the tissue and cell molecular analysis shared resource, mayo clinic. positive controls for ihc stains were normal colon (for tgfbr ), normal pancreas (sstr a and sstr ), breast cancer (egfr, igf r, and pdgfra), nor- mal skin (vegfr ), prostate cancer (mtor and hsp ), and colon cancer (mgmt). negative controls for all stains were prepared by substituting diluent for primary antibodies. ihc of all biomarkers was scored based on intensity by patholo- gists (r.v.l. and l.j.a.), with a score of indicating absence of staining and , , and representing weak, moderate, and strong staining intensity, respectively. the immunohistochemi- cal intensity score reported for the staining of tumor cells within each assessable pet was the average from the replicate tma cores for that sample. all immunohistochemical antibodies and epitope retrieval methods are listed in supplementary table (sup- plemental digital content , http://links.lww.com/mpa/a ). fluorescence in situ hybridization analysis of gene copy number pet tma sections ( hm) were analyzed by fish for her- /neu and egfr copy number by the cytogenetics shared resource laboratory, mayo clinic, by the methodology previ- ously reported. briefly, nuclei were scored per sample with quantitation of red signals (her- /neu or egfr) and green signals (chromosome centromere [cep ] or chromosome centromere [cep ], respectively]. a her- /neuytoycep ratio or egfr-to-cep ratio of . to . was interpreted as normal, less than . as gene deletion, . to . as gene dupli- cation, and . or greater as gene amplification. aneusomy was defined to be a normal her- /neuytoycep or egfr- to-cep ratio with greater than % of cells having or more table . characteristics of cases of pancreatic endocrine tumors ( ) sex male female age, median (range) at surgery, y ( y ) subtype nonfunctional functional insulinoma gastrinoma glucagonoma previous therapy history of other cancer tumor sites in tma* pancreas liver lymph node duodenum diaphragm *tma constructed with pet primaries and metastatic pets. gilbert et al pancreas & volume , number , april www.pancreasjournal.com * lippincott williams & wilkins copyright © lippincott williams & wilkins. unauthorized reproduction of this article is prohibited. http://links.lww.com/mpa/a http://links.lww.com/mpa/a t a b le . pa n cr ea ti c en d o cr in e t u m o rs ex h ib it in g st ro n g b io m ar ke r ex p re ss io n c a se w h o cl a ss if ic a ti o n t u m o r si te v e g f r t g f b r p d g f r a s s t r s s t r a ig f r h sp e g f r m t o r m g m t m ea n e g f r q . /c el l * p an cr ea s + † j † j j j j j j j j j l iv er + + + + + + j j j v j ‡ l y m p h n o d e + + + + + j j j j j + l iv er + + + + + + j j j j + . p an cr ea s + + j + + j + j j j j p an cr ea s + + + + + + + j j j j l y m p h n o d e + + + j + j j j j j j l iv er j + j + + + j j j j j § p an cr ea s + + + + + j j j j j + d ia p h ra g m j . p an cr ea s j j j j j j j j j j j p an cr ea s + + j + + j j j j j j l iv er + + + + + j j j + j j ||¶ p an cr ea s + + + j j + j j j j j l iv er j + j + j + j j j j j p an cr ea s + j + + + j j j j j j l y m p h n o d e + j + + + j j j j j j p an cr ea s + j + j j + j j j j j l iv er j j j j j j j j j v j p an cr ea s + + + + + j j j j v + p an cr ea s j j j j j + j j j j j l iv er j j + j j j j j j j j l p an cr ea s + + + j + + + j j v + l y m p h n o d e + + + + + j j j j j + l iv er + + + + + j j j j v + . p an cr ea s + j j + j j j p an cr ea s + + + + + j j j j v + l iv er + + + j + + j j j j + . p an cr ea s j + + + j + j j j j j . p an cr ea s j j j j j j j j j j j l y m p h n o d e + + + + + + + j j j j l . p an cr ea s + + + + j + j j j j . p an cr ea s + j j j j + j j j j ‡ p an cr ea s + + j j j j j j j j + l y m p h n o d e + + + j + j j j j v + . p an cr ea s + + + j + + j j j j + l * * . p an cr ea s + + + + + + j j j j j . p an cr ea s + + j + + + j j j j j l . p an cr ea s + j + + j + j j j j + (c on ti n ue d on n ex t pa ge ) pancreas & volume , number , april molecular analysis of pancreatic endocrine tumors * lippincott williams & wilkins www.pancreasjournal.com copyright © lippincott williams & wilkins. unauthorized reproduction of this article is prohibited. t a b le . (c on ti n ue d) c a se w h o cl a ss if ic a ti o n t u m o r si te v e g f r t g f b r p d g f r a s s t r s s t r a ig f r h sp e g f r m t o r m g m t m ea n e g f r q . /c el l . p an cr ea s + j + + + + j j j j + p an cr ea s j j j + j + j j j j j l iv er + + j + + j j j j v j p an cr ea s + j + j + + j j j v j d u o d en u m + + + j + + j j j v + ‡ l iv er + + j + j j + j j v + p an cr ea s j + + j j j + j j j j l iv er j + j j j + j j j j j . p an cr ea s j j j + j j j j j j j p an cr ea s + + + + + j + j j j j l iv er + + + + + j j j j v + p an cr ea s + + j j j j j j j j j l iv er j j j j j + j j j j j * * † † p an cr ea s + + + j + + j j j j j d u o d en u m + + + + j j j j j j j p an cr ea s + + + + j + + j j v j p an cr ea s + j + j j + j j j j j ||‡ ‡ p an cr ea s + + + j j j j j j j j l y m p h n o d e + + + + + j j j j j j l iv er + + j + j j j + j j j . p an cr ea s + + j + + j j j j v . p an cr ea s + + + j j j + j j j j . p an cr ea s + + + + + + j j j j j . p an cr ea s + j + j j + j j j j j . p an cr ea s + + + j + + j j j j + . p an cr ea s + + + j + j j j j v j p an cr ea s + j j j j j j j j j + l iv er + j + + + j j j j v + * . , w el l- d if fe re n ti at ed en d o cr in e tu m o r w it h ‘‘ b en ig n b eh av io r’ ’; . , w el l- d if fe re n ti at ed en d o cr in e tu m o r w it h u n ce rt ai n b eh av io r; , w el l- d if fe re n ti at ed en d o cr in e ca rc in o m a. † f o r v e g f r , t g f b r , p d g f r a , s s t r , s s t r a , ig f r , h sp , e g f r , m t o r , an d m g m t , p lu s (+ ) in d ic at es an ih c in te n si ty sc o re o f , an d m in u s (j ) in d ic at es an ih c sc o re le ss th an ; fo r m g m t , em d as h (v ) in d ic at es a sc o re o f . ‡ t u m o r( s) f is h -p o si ti ve fo r e g f r an d h e r - /n eu . § p e t th er ap y b ef o re th is in st an ce o f su rg er y w as ra d ia ti o n th er ap y. || p e t th er ap y b ef o re th is in st an ce o f su rg er y w as so m at o st at in an al og th er ap y. ¶ p e t th er ap y b ef o re th is in st an ce o f su rg er y w as ch em o th er ap y. l f u n ct io n in g p e t is in su li n o m a. * * p e t th er ap y b ef o re th is in st an ce o f su rg er y w as su rg er y. † † f u nc ti o n in g p e t is g as tr in o m a. ‡ ‡ f u nc ti o n in g p e t is g lu ca g o n o m a. gilbert et al pancreas & volume , number , april www.pancreasjournal.com * lippincott williams & wilkins copyright © lippincott williams & wilkins. unauthorized reproduction of this article is prohibited. cep or cep signals, respectively (ie, a balanced gain in the number of gene copies and the number of chromosome copies). aneuploid tumors were analyzed for mean egfr copy number/ cell to determine whether egfr copy number was elevated (q . per nucleus or q . per cell ). her- /neu and egfr fish-positive samples were those demonstrating amplification or high aneusomy with % or greater of cells having or more copies of her- /neu or egfr, respectively. owing to the inher- ent admixture of tumor and nontumor cells within pets, fish- positivity for her- /neu and egfr as well as fish-determined elevation of egfr copy number/cell was assigned the highest value score from the replicate tma cores for each assessable neoplasm. mutational analysis of selected egfr, kit, pdgfra, and kras exons thirty-six surgical specimens from the cases in this study were flash-frozen after excision and stored at j -c by the tissue core resource of the mayo clinic cancer center spore in pancreatic cancer. dna for mutational analyses was isolated from frozen tissue samples with the qiaamp dna mini kit (qiagen, valencia, ca). mutational analyses of egfr (exons , , and ) and kit (exons , , , and ) were performed as reported (gilbert et al , ); mutational analyses of kras (exon ) and pdgfra (exons , , and ) were conducted as described. amplification and sequenc- ing were repeated for all observed polymorphisms and muta- tions. all tissues assessed for egfr, kit, pdgfra, and kras mutations are listed by case in supplementary table (supple- mental digital content , http://links.lww.com/mpa/a ). cell culture the qgp- (monolayer) pet cell line was purchased from the japan health sciences foundation’s health science re- search resources bank (osaka, japan). the qgp- line was established from a human pancreatic islet cell carcinoma lesion in the late s, exhibiting morphological and histological similarities to the original tumor. the nci-h (monolayer) human bronchopulmonary neuroendocrine tumor (carcinoid) cell line was purchased from american type culture collection (manasses, va). cell lines were cultured at -c in a humidi- fied environment of %: % air-to-co in rpmi media (invitrogen; carlsbad, ca) supplemented with % vol/vol heat- inactivated fetal bovine serum (paa labs; new bedford, ma). cell proliferation assay qgp- ( per well) or nci-h cells ( per well) were seeded into -well plates (corning, corning, ny) in hl aliquots of growth medium and incubated ( -c) for hours. each drug concentration was added in hl of growth medium containing . % vol/vol dmso to repli- cate wells; hl of growth medium containing . % vol/vol dmso without drug was added to replicate wells of control cells. after incubation for days (continuous drug exposure), cell growth was determined with the -( , -dimethylthiazol- -yl)- -( -carboxymethoxyphenyl)- -( -sulfophenyl)- h-tetrazolium, inner salt (mts) assay upon addition to each well of hl containing a : ratio of -mg/ml mts (promega, madison, wi) and . mg/ml phenazine methosulfate (sigma, st. louis, mo). after incubation for hours, absorbance at nm was mea- sured on a spectramax plus (molecular devices, sunnyvale, ca) microplate reader. dose response experiments for each drug were performed in triplicate, with growth of treated cells at each dosage compared with proliferation of control cells. ic values were estimated with prism software (graphpad, san diego, ca) using nonlinear least squares regression analysis to fit the mean percent control value for each dosage to the best sigmoi- dal dose-response curve. anticancer drugs axitinib, sunitinib, gefitinib, and bms- were purchased from chemitek (indianapolis, in); -aag was provided by the national can- cer institute (bethesda, md). western immunoblot analysis whole-cell lysates were prepared from cultured cells with ripa lysis buffer (santa cruz biotechnology, santa cruz, ca) according to manufacturer’s instructions; protein was quantitat- ed using the dc protein assay (bio-rad, hercules, ca). west- ern blot analysis was performed after electrophoresis of samples that were loaded onto % or % wt/vol separating gels (criterion xt; bio-rad) on the basis of protein concentra- tion; after transfer to pvdf membranes (bio-rad), immunore- active proteins were detected using supersignal enhanced chemiluminescent substrates (pierce, rockford, il) and hyblot cl film (denville scientific, metuchen, nj). primary antibo- dies used were anti-egfr (santa cruz sc- ), anti-igf r beta (cell signaling ; danvers, ma), anti-phospho-igf r beta (tyr )/insulin receptor beta (tyr ) (cell signaling ), anti-vegfr (cell signaling ), anti-phospho-vegfr (tyr ) (cell signaling ), anti-p waf /cip (cdkn a) (cell signaling ), anti-hsp (cell signaling ), and anti->/a-tubulin (cell signaling ); the secondary antibody was goat anti-rabbit igg-hrp (santa cruz sc- ). results patient cases of patients in this study, were female and were male (table ). the median age at the time of surgery was years (range, y ). most of the patients ( ) had nonfunctional pets, and patients had received treatment of pancreatic endocrine tumors before surgery (cases identified in table ). the classification of all cases according to the world health organization clinicopathological criteria is provided in table . sixty-seven pets (table ) from the cases were accessi- ble in formalin-fixed, paraffin-embedded blocks and were in- cluded in the tma construction, with liver the most frequent metastatic site represented. supplementary table (supplemen- tal digital content , http://links.lww.com/mpa/a ) lists all pets, by case, included in the tma. mutational analysis of egfr, kit, pdgfra, and kras thirty-six pets (from of the cases) were avail- able as frozen specimens, providing dna for analysis of mutations in selected exons of egfr, kit, pdgfra, and kras. supplementary table (supplemental digital content , http://links.lww.com/mpa/a ) lists, by case, the tissues (all primary tumors except one) examined by mutational analysis. no pet analyzed displayed kras exon mutations that are associated with nonresponse to anti-egfr monoclonal anti- bodies y and tkis. y no pet exhibited egfr mutations predictive of gefitinib sensitivity, no kit or pdgfra muta- tions associated with clinical response to imatinib. polymorphisms in pdgfra and egfr were detected in some pets during mutational analyses. all tumors analyzed were homozygous for the synonymous single nucleotide polymorphism (snp) dbsnp rs in pdgfra exon (a g, where number ‘‘ ’’ is assigned to the ‘‘a’’ in the translation initiation codon of the cdna; amino acid position ). pancreatic pancreas & volume , number , april molecular analysis of pancreatic endocrine tumors * lippincott williams & wilkins www.pancreasjournal.com copyright © lippincott williams & wilkins. unauthorized reproduction of this article is prohibited. http://links.lww.com/mpa/a http://links.lww.com/mpa/a http://links.lww.com/mpa/a endocrine tumors from % of the cases examined were hetero- zygous for the synonymous snp dbsnp rs in pdgfra exon (c t; amino acid ). in addition, tu- mor in cases exhibited heterozygosity for the synonymous snp dbsnp rs in egfr exon (c t; amino acid ). fluorescence in situ hybridization analysis of egfr and her- /neu copy number egfr fluorescence in situ hybridization analysis determined that some of the assessable cases had pets displaying egfr aneus- omy with egfr copy number at elevated levels associated with the response of colorectal cancer to panitumumab and cetuxi- mab: % exhibited . or greater per nucleus, % exhibited . or greater per cell. of the cases in which multiple tumor tissues from the same patient were assessable for elevated egfr copy number, all sites were positive in cases and all negative in . table presents the pets exhibiting elevated egfr copy number, on a case-to-case basis. three cases with pets displaying elevated egfr copy number were also determined to be ‘‘fish-positive,’’ with egfr copy number at high levels associated with gefitinib re- sponse (aneusomy with q % of cells having q copies of egfr , ). egfr fish-positive tumors, all from cases with nonfunctional pets and all tumors from each case exhibiting fish-positivity, are indicated in table . her- /neu her- /neu aneusomy was detected in % of the assess- able cases, although pet her- /neu copy number was below levels predictive of anti-her response (defined as her- /neu copies per cell by fish analysis ). however, cases with her- /neu aneusomy displayed high copy number for both egfr and her- /neu (aneusomy with q % of cells having q gene copies), a combination predictive of gefitinib sensitiv- ity greater than that for patients with high egfr copy number alone. table provides the cases with tumors that were fish- positive for both her- /neu and egfr, all well-differentiated endocrine carcinomas. immunohistochemical analysis the immunohistochemical staining of pancreatic endocrine tumors for sstr a, sstr , egfr, pdgfra, vegfr , tgfbr , hsp , igf r, mtor, and mgmtis illustrated in fig- ure . all of the immunohistochemical stains showed a diffuse cytoplasmic pattern with the exception of mgmt, which was a nuclear stain, and sstr a, which was predominantly mem- branous. igf r, mtor, and sstr in most cases stained in a diffuse pattern; however, there were a few cases that had more of a nuclear staining pattern with weak cytoplasmic staining; the significance of these findings was uncertain. predominantly fo- cal staining was not noted with any of the antibodies. a pet sample was assigned a score of if the tissue had weak staining diffusely or only a few cells with weak staining. the immunohistochemical staining intensity score for each assessable pet in the tma is presented for each biomarker in figure , with scores grouped by location of malignancy (pri- mary or metastasis). with the exception of mgmt, all biomar- kers were expressed in all tumors except for liver metastasis with no detectable vegfr , egfr, or mtor staining. the biomarkers for which the largest number of pets exhibited the strongest ihc staining were vegfr , tgfbr , pdgfra, sstr , sstr a, and igf r, with intensity scores of for figure . immunohistochemical analysis of pancreatic endocrine tumors. individual pet specimens in the tma (original magnification � ) exhibiting strong immunostaining for vegfr (a), tgfbr (b), pdgfra (c), sstr (d), sstr a (e), igf r (f), hsp (g), egfr (h), mtor (i), and mgmt (j). gilbert et al pancreas & volume , number , april www.pancreasjournal.com * lippincott williams & wilkins copyright © lippincott williams & wilkins. unauthorized reproduction of this article is prohibited. %, %, %, %, %, and % of all tumors, respective- ly. the biomarker with the lowest immunohistochemical expres- sion level was mgmt, with complete absence of staining in % of pets ( % of cases); in of these cases with available primary as well as metastatic tumor tissues, only exhibited mgmt deficiency across all sites. for each target protein ana- lyzed immunohistochemically, the staining intensity score aver- aged over all primaries was not significantly different from the score averaged over all metastases (data not shown) except for vegfr , with a mean (sem) of . ( . ) for primaries and . ( . ) for metastases (p g . ). table summarizes, by case, the combination of molecular markers that were strongly expressed (immunohistochemical staining intensity score of ) in each assessable pet. the per- centage of cases with assessable primary as well as metastatic tumors in which all sites exhibited the same biomarker level, that is, an ihc intensity score of either or less than (for mgmt, either g or ), were as follows: for biomarkers egfr and mtor, %; tgfbr and hsp , %; vegfr and sstr a, %; mgmt, %; sstr , %; pdgfra, %; and igf r, %. of cases in which multiple tumor tissues from the same patient were analyzed, a majority exhibited strong immunohisto- chemical expression across all sites for biomarkers vegfr and tgfbr ( % and %, respectively). most pets that exhibited strong expression of vegfr also displayed strong staining for pdgfra ( %), a similar occurrence for sstr and sstr a ( %). of note, strong egfr immunohistochemical staining was not exhibited by any pet that displayed elevated egfr copy number. in vitro effects of anticancer drugs in pet cells a dearth of well-established human pet cell lines currently exists. accordingly, our in vitro pet studies were constrained to pet line, qgp- , for measuring the effects on cellular proliferation and downstream functionality of anticancer drug targeting biomarkers identified in a collection of pets. the mts assays performed with qgp- cells determined that growth inhibi- tion was produced by increasing concentrations of the follow- ing therapeutic agents: axitinib and sunitinib (tkis targeting vegfr - and pdgfra-b, among others), bms- (a tki specific for igf r and ir), gefitinib (a tki selective for egfr), as well as -aag (an hsp inhibitor active in bronchopulmonary net cell lines ). table presents ic values for the inhibition of qgp- proliferation induced by each of these compounds. the most potent growth inhibitors, bms- , -aag, and axitinib, were assessed in follow-up experiments with qgp- cells to measure functional effects downstream of their targeted proteins, with results from qgp- cells compared, in turn, with those obtained in the human nci-h bronchopulmonary neuro- endocrine tumor (carcinoid) cell line. western immunoblot analysis indicated that exposure of qgp- cells ( hours) to bms- concentrations increasing from . to hmol/l resulted in figure . immunohistochemical staining intensity of biomarkers in pets. individual ihc staining intensity scores for all pets assessable in the tma (n = ) were grouped for comparison by site of malignancy (primary or metastasis). table . anticancer drugs that inhibited qgp- human pet cell proliferation inhibitor specificity ic (nm)* bms- igf r/ir -aag hsp axitinib vegfr - , pdgfra-b, kit sunitinib vegfr - , pdgfra-b, kit, flt , csf r, ret gefitinib egfr , *cell proliferation was determined by the mts assay; data were the average of experiments or more. pancreas & volume , number , april molecular analysis of pancreatic endocrine tumors * lippincott williams & wilkins www.pancreasjournal.com copyright © lippincott williams & wilkins. unauthorized reproduction of this article is prohibited. increasing inhibition of the constitutive phosphorylation of igf r (n = ). figure a illustrates the inhibition induced by increasing bms- concentrations on qgp- cell growth as well as on constitutive igf r phosphorylation. in comparison, bms- was less potent at inhibiting nci-h carcinoid cell growth (ic of nmol/l) but reduced constitutive phosphor- ylation of igf r in the nci-h line in a similar fashion (see gilbert et al ). incubation of qgp- cells ( hours) with -aag con- centrations ranging from . to hmol/l resulted in dose- dependent decreases in the levels of the client proteins egfr, igf r, and vegfr (the principal mediator of vegf signal- ing [review roskoski et al ]) as measured by western analysis (n = ). figure b illustrates in qgp- cells the -aag- induced dose-dependent decrease in cell proliferation and in cellular levels of egfr, igf r, and vegfr . in comparison, -aag, with -fold greater antiproliferative activity in the nci-h carcinoid line (ic of . nmol/l), decreased in a dose-related fashion the levels in nci-h cells of egfr and igf r [see gilbert et al ] but not vegfr (data not shown). western blot analysis determined that qgp- cells exposed ( hours) to axitinib concentrations from . to hmol/l exhibited increasing levels of p waf /cip (cdkn a) (p ) expression with no change in constitutive vegfr phosphory- lation (n = ). figure c presents data on the growth inhibition, increased p expression, and constant level of constitutive vegfr phosphorylation seen in qgp- cells exposed to axiti- nib in a dose-related fashion. in contrast, although sunitinib was figure . effects of anticancer drugs in qgp- pet cell line. a, left: qgp- cells ( per well) were incubated (continuous exposure, days) in -well plates at -c with increasing concentrations of anticancer drug bms- (targeting igf r/ir) in serum-containing medium, with cell proliferation measured by the mts assay; right: qgp- cells ( , per well) were incubated (continuous exposure, hours) in -well plates at -c with increasing concentrations of bms- in serum-containing medium, with effect on constitutive igf r phosphorylation determined by western immunoblotting of equal quantities of protein from whole cell lysates. b, effect of increasing concentrations of anticancer drug -aag (targeting hsp ) on qgp- cell growth and levels of indicated biomarkers, with experiments performed as described in a. c, effect of increasing concentrations of anticancer therapeutic axitinib (targeting vegfr - , pdgfra-b, and kit) on qgp- cell growth and levels of indicated biomarkers, with experiments performed as described in a. mts data presented were the mean (se) of experiments; western immunoblotting results were representative blots from of experiments. gilbert et al pancreas & volume , number , april www.pancreasjournal.com * lippincott williams & wilkins copyright © lippincott williams & wilkins. unauthorized reproduction of this article is prohibited. moderately less potent in nci-h cells (ic of . hmol/l; n = ), axitinib had little effect on the proliferation of the nci- h carcinoid line. an axitinib concentration of hmol/l inhibited nci-h growth less than % (n = ), the solubility limit in rpmi preventing an accurate ic determination. in analyzing the pet cells for genetic abnormalities, egfr aneusomy was detected by fish in the qgp- line, with ele- vated egfr copy number predictive of sensitivity to panitumu- mab and cetuximab; these results were found in nci-h carcinoid cells as well (see gilbert et al ). qgp- cells were also egfr fish-positive, with high aneusomy associated with gefitinib response, as were nci-h cells (see gilbert et al ). mutational analyses detected no egfr, kit, or pdgfra ac- tivating mutations in either the qgp- or nci-h line. how- ever, qgp- (as well as nci-h ) cells were homozygous for the dbsnp rs in pdgfra exon ; the nci-h line was heterozygous for the dbsnp rs in pdgfra exon . furthermore, in contradistinction to the reported absence in qgp- cells of mutations in kras codons and associ- ated with nonresponse to anti-egfr therapy, our analysis indicated that qgp- cells harbored the kras nonresponse co- don mutation g t (encoding g v); nci-h cells also exhibited this mutation, which was heterozygous in both lines. consistent with the kras mutational status of qgp- cells, gefitinib exhibited the lowest antiproliferative activity of the therapeutic agents analyzed in the qgp- line, with a - to - fold higher ic value (table ). in nci-h cells, increasing concentrations of gefitinib inhibited proliferation in a dose- related, biphasic-like fashion, with gefitinib concentrations of hmol/l or greater inhibiting growth more than % (n = ). of note, the nonresponse kras mutation detected in qgp- pet cells was absent from all pet tissues analyzed. finally, immunohistochemical analysis of qgp- cells for the molecular markers evaluated in pet tma sections deter- mined that strong immunohistochemical staining (ihc staining intensity score of ) was exhibited by all but biomarkers: mgmt and hsp (intensity score of ) and sstr a (score of ). in the nci-h line, all molecular markers were strongly expressed except mgmt (score of ). interestingly, the biomarkers that exhibited the strongest ihc staining in the largest number of pets (vegfr , tgfbr , pdgfra, sstr , sstr a, and igf r) were all strongly expressed in qgp- pet cells as well, with the exception of sstr a. discussion of cases of pets diagnosed and recorded in the seer registry from to , . % of the patients presented with metastatic or regionally advanced tumors. although somato- statin therapy is effective for clinical symptoms and may induce tumor growth stabilization (review modlin et al ), pets gener- ally have a short-lived duration of response to conventional che- motherapeutic agents (review metz and jensen ); while recent advances have been made in significantly prolonging progression- free survival with everolimus and sunitinib, , new therapeutic strategies, especially strategies inducing higher radiographic tu- mor response rates, are needed. we analyzed a collection of pets for genetic abnormalities and protein expression of a vari- ety of growth factor receptors and downstream effectors and regulators targeted by therapeutics developed for other forms of cancer and assessed previously in a heterogeneous collection of neuroendocrine (carcinoid) tumors. from analyses for genetic abnormalities in pets, the egfr fish assay provided results of note. elevated egfr copy number was detected in % of all assessable cases, whereas moderate egfr expression was displayed immunohis- tochemically in most of the pets. in comparison, the first im- munohistochemical study of both egfr and activated-egfr in a heterogeneous collection of metastatic pets ( cases) reported egfr expression in only % of pet primaries and % of metastatic pets; these values were % and %, respectively, for phosphorylated-egfr expression. interest- ingly, % of the cases with elevated egfr copy number in this report were well-differentiated endocrine carcinomas; these results, together with the absence of kras nonresponse muta- tions in pets, suggested further research into the role of anti- egfr monoclonal antibodies for selected pets. protein expression of biomarkers was compared immu- nohistochemically, including that for sstr a and sstr . of the human somatostatin receptor subtypes, sstr and sstr have the highest binding affinity for somatostatin analogs used clinically for gastroenteropancreatic neuroendocrine tumors (primarily octreotide and lanreotide) (review patel ). the high expression levels of sstr a (the long form of sstr ) and sstr in most of the pets were consistent with the therapeutic importance of somatostatin analogs in pet disease for improv- ing clinical symptoms and potentially stabilizing tumor growth. although somatostatin analogs have been shown to improve time to progression in carcinoid tumors, no similar studies in patients with pets have been performed. despite the lack of clinical data, somatostatin analogs are frequently used in patients with pets. in contrast, mgmt displayed the lowest immunohisto- chemical expression level of biomarkers analyzed in this collection of pets, with % exhibiting no detectable stain- ing. mgmt deficiency, a predictive marker for pet sensitivity to temozolomide, was less common in this study than in an earlier report of archival pets in which % were mgmt deficient. our results indicated that, aside from the prevalence of somatostatin receptors in both malignancies, pets exhibited a different immunohistochemical expression profile for growth factor receptor and downstream regulators than did a heteroge- neous collection of neuroendocrine (carcinoid) tumors ( sam- ples consisting predominantly of bronchopulmonary ( %) and small bowel ( %) primaries as well as liver ( %) and lymph node ( %) metastases ). the biomarkers for which the largest number of pets exhibited the strongest ihc staining were, in decreasing order, vegfr , tgfbr , pdgfra, and igf r as compared with the sequence hsp , tgfbr , and igf r in carcinoid tumors (hsp and igf r in small bowel primaries alone). the expression of high levels of numerous growth factor receptors and regulators in large percentages of pets en- couraged follow-up in vitro studies of the effects on pet cells of anticancer drugs targeting these biomarkers. qgp- cell growth was inhibited by anticancer drug bms- (an anti-igf r/ir tki currently in phase i clinical trials for treatment of solid tumors) at nanomole per liter concentrations that inhibited downstream constitutive igf r phosphorylation. in addition, qgp- proliferation was sensitive to chemotherapeu- tic -aag (an hsp small molecule inhibitor in phase ii clini- cal trials for treatment of advanced malignancies) at nanomole per liter concentrations that induced loss of client proteins egfr, igf r, and vegfr . finally, the therapeutic agent axitinib (a tki targeting vegfr - /pdgfra-b/kit in phase ii clinical trials for treatment of solid tumors) inhibited qgp- growth at nanomole per liter concentrations that increased expression of cyclin-dependent kinase inhibitor p without inhibiting constitutive vegfr phosphorylation, a pattern suggestive of treatment-induced senescence in cancer (review ewal et al ). pancreas & volume , number , april molecular analysis of pancreatic endocrine tumors * lippincott williams & wilkins www.pancreasjournal.com copyright © lippincott williams & wilkins. unauthorized reproduction of this article is prohibited. although this report is the first immunohistochemical study of igf r in a heterogeneous collection of pets, igf r was detected by ihc in (of ) gastrinomas assessed previously. no clinical trials of anti-igf r small molecule tki mono- therapy for pets have been undertaken, for comparison of treat- ment response to data presented here on in vitro bms- antiproliferative activity and strong pet igf r expression. however, anti-igf r monoclonal antibody monotherapy for pets has been investigated in clinical studies. results from a recent phase ii clinical trial with dalotuzumab (mk- ) indi- cated an absence of antitumor activity in patients with meta- static pets; igf r tumor expression data were unavailable. of note, it is well established that functional reciprocal cross- talk between egfr and igf r occurs in other forms of cancer, in which adaptive activation of her family members occurs upon inhibition of igf r (and vice versa). thus, further re- search into developing anti-igf r tkis for potential pet anti- cancer treatment might benefit from investigating these therapeutics as part of multidrug, rather than single-agent, strat- egies targeting the her family of receptors as well. similarly, no clinical studies in patients with pets have been performed with single-drug axitinib, the more selective and potent of the anti-vegfr - /pdgfra-b tkis analyzed in qgp- cells, for comparison of treatment response to data here on in vitro antiproliferative activity and strong tumor ex- pression of vegfr and pdgfra. however, sunitinib mono- therapy has been investigated in phase ii and iii clinical trials in patients with pets, although no vegfr - and pdgfra-b tumor expression data are available. , characteristics of the pet growth inhibition induced by axitinib and sunitinib in vitro and in vivo, respectively, are consistent with a cytostatic mech- anism. axitinib induced evidence of senescence in pet cells, a response possibly exploitable in follow-up combination studies with conventional chemotherapeutics cytotoxic to growth ar- rested cells. sunitinib monotherapy in a phase ii trial in patients with pets induced a level of tumor shrinkage classified as sta- ble disease by response evaluation criteria in solid tumors in most patients ( . %), whereas the objective response rate was . %. furthermore, in a recent phase iii study of sunitinib monotherapy in patients with pets, the median progression- free survival in the sunitinib-treated group was more than dou- ble that of the placebo-treated group, whereas the objective response rate was . %. taken together, these results are en- couraging of combination, rather than monotherapy, studies of axitinib to fully explore its potential for development as anti- tumor therapy in pets, that is, by combining axitinib with con- ventional chemotherapeutics toxic to tumor cells in growth arrest. in contrast to the in vitro effects of tkis bms- and axitinib, antiproliferative concentrations of inhibitor -aag, targeting the ubiquitous molecular chaperone hsp , depleted multiple growth factor receptors in qgp- cells in a concur- rent fashion (egfr, igf r, and vegfr ). no clinical trials of -aag monotherapy for pets have been undertaken; how- ever, hsp was moderately strongly expressed in most of these tumors, suggesting that further investigation into the potential for targeting hsp for development of new anticancer drugs for this malignancy might benefit from multidrug strategies that include a cytotoxic chemotherapeutic with a different mode of action. pancreatic endocrine tumors are commonly diagnosed at advanced stages of disease for which few current therapies induce high tumor regression rates. ongoing investigations in our laboratory are based on this multifaceted study, which en- couraged further research into the role in some pets of multi- drug strategies incorporating anti-egfr monoclonal antibody, anti-igf r tki bms- , or hsp inhibitor -aag as well as combination studies with axitinib and conventional che- motherapeutics maximally toxic to growth-arrested cancer cells. references . halfdanarson tr, rubin j, farnell mb, et al. pancreatic endocrine neoplasms: epidemiology and prognosis of pancreatic endocrine tumors. endocr relat cancer. 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pancreatic endocrine tumors * lippincott williams & wilkins www.pancreasjournal.com copyright © lippincott williams & wilkins. unauthorized reproduction of this article is prohibited. specialized early treatment for persons with disorders of consciousness: program components and outcomes shepherd center from the selectedworks of kathryn farris october , specialized early treatment for persons with disorders of consciousness: program components and outcomes ronald t. seel, shepherd center jennifer douglas, shepherd center andrew c. dennison, shepherd center sarah heaner, shepherd center kathryn farris, shepherd center, et al. available at: https://works.bepress.com/kathryn-farris/ / https://www.shepherd.org/ https://works.bepress.com/kathryn-farris/ https://works.bepress.com/kathryn-farris/ / original article specialized early treatment for persons with disorders of consciousness: program components and outcomes ronald t. seel, phd, jennifer douglas, ms, ccc-slp, andrew c. dennison, md, sarah heaner, mph, kathryn farris, otr/l, catherine rogers, phd from the crawford research institute or brain injury program, shepherd center, atlanta, ga. abstract objectives: to describe a specialized early treatment program for persons with disorders of consciousness (doc) that includes family education; to identify rates of secondary conditions, imaging used, and selected interventions; and to evaluate outcomes. design: a single-center, retrospective, pre-post design using electronic medical record data. setting: a commission on accreditation of rehabilitation facilitieseaccredited, long-term acute care hospital that provides acute medical and inpatient rehabilitation levels of care for people with catastrophic injuries. participants: persons (nz ) aged to years with doc of primarily traumatic etiology admitted at a mean � sd of . � . days postinjury; % were in coma, % were in the vegetative state, and % were in the minimally conscious state. interventions: an acute medical level of care with � minutes of daily interdisciplinary rehabilitation and didactic and hands-on caretaking education for families. main outcome measures: coma recovery scaleerevised, modified ashworth scale, and discharge disposition. results: program admission medical acuity included dysautonomia ( %), airway modifications ( %), infections (eg, pneumonia, %; urinary tract infection, %; blood, %), deep vein thrombosis ( %), pressure ulcers ( %), and marked hypertonia ( % in each limb). there were program interruptions (ie, surgeries, nonsurgical intensive care unit transfers). mean length of stay � sd was . � . days (range, e d). patients showed improved consciousness and respiratory function and reduced presence or severity of pressure ulcers and upper extremity hypertonia. at discharge, % showed sufficient emergence from a minimally conscious state to transition to mainstream inpatient rehabilitation, and % did not emerge but were discharged home to family with ongoing programmatic support; only % did not emerge and were institutionalized. conclusions: persons with doc resulting primarily from a traumatic etiology who receive specialized early treatment that includes acute medical care and � minutes of daily rehabilitation are likely to show improved consciousness and body function; more than half may transition to mainstream inpatient rehabilitation. families who receive comprehensive education and hands-on training with ongoing follow-up support may be twice as likely to provide care for medically stable persons with doc in their homes versus nursing facility placement. archives of physical medicine and rehabilitation ; : - ª by the american congress of rehabilitation medicine disorders of consciousness (doc) are medical conditions that arise from various etiologies in which the duration of impairment may be a brief period (ie, seconds, minutes, or hours), they may be a tran- sient stage of recovery (eg, days or weeks after severe brain injury), or they may be a chronic, stable condition. consensus-based guidelines from the multi-society task force on persistent vege- tative state and the aspen workgroup define ascending doc levels: coma, the vegetative state (vs), and the minimally conscious state (mcs) (table ). - persons in coma are unresponsive and unarousable with no spontaneous eye opening, sleep/wake cycles, or observable evidence of self-awareness or environmental aware- ness. in the vs, persons display spontaneous eye opening and sleep/wake cycles, but observable signs of purposeful behavior (eg, language comprehension, behavioral response to stimuli) remain absent. in the mcs, persons demonstrate minimal but definitive behavioral evidence of awareness; conscious behavior is often subtle and inconsistent, and must be systematically differentiated from reflexive or random behavior. , for complete doc guideline criteria and detailed differential diagnostic considerations, sources are available. , the most common causes of doc in adolescents and adults are traumatic brain injury (tbi) and hypoxic-ischemic encephalopathy; other doc etiologies include cerebrovascular no commercial party having a direct financial interest in the results of the research supporting this article has conferred or will confer a benefit on the authors or on any organization with which the authors are associated. - / /$ - see front matter ª by the american congress of rehabilitation medicine http://dx.doi.org/ . /j.apmr. . . archives of physical medicine and rehabilitation journal homepage: www.archives-pmr.org archives of physical medicine and rehabilitation ; : - delta: _given name delta: _surname delta: _given name delta: _surname delta: _given name delta: _surname http://crossmark.crossref.org/dialog/?doi= . /j.apmr. . . &domain=pdf http://dx.doi.org/ . /j.apmr. . . http://www.archives-pmr.org http://dx.doi.org/ . /j.apmr. . . injury, central nervous system infections, tumors, poisoning, and neurodegenerative disorders. long-term outcomes for persons with doc range from moderate to very severe disability and vary based on etiology and early rate of recovery. - persons with doc caused by tbi generally have a better prognosis than persons with other etiolo- gies. , , two recent prospective studies , indicate that persons with severe tbi, including persons with doc, who receive early and continuous rehabilitation beginning in the acute medical level of care have better outcomes than those who do not receive early rehabilitation. further, prospective longitudinal research indicates that persons with doc caused by tbi who receive early rehabilitation show improved command-following at discharge and improved functional cognition and decreased supervision needs across -, - and -year postinjury follow-up. given these encouraging findings and considering the long-term health care system costs for very severe disability and nursing facility (nf) placement, it is critical to establish effective, early doc treatment models after intensive care that can facilitate recovery of consciousness and physical function. an effective, early doc treatment model would likely need to address at least essential aspects of care. first, basic care and secondary medical conditions that emerge or linger after intensive care would need to be managed. , if not treated successfully, secondary conditions can progress to more serious complications with substantial associated health care costs. , neurologic complications (eg, hydrocephalus, subdural hematoma, infections) must be detected and treated appropriately to reduce the risk of further disability and nf placement. , , dysautonomia (ie, sympathetic storming) is common, can be difficult to treat, and often requires multimodal interventions (eg, environmental modification, medications, intrathecal baclofen [itb] trial/pump). persons with doc are dependent for all basic care activities, often require assistive equipment for feeding and breathing, and have limited self-initiated movement. they are highly susceptible to infections of the respiratory and genitouri- nary systems, which can become chronic, damage organs, or become life-threatening. inactivity and physical deconditioning increase the risk for developing deep vein thrombosis (dvt) that may require inferior vena cava (ivc) filter placement, and pres- sure ulcers that may require costly muscle flap or skin graft surgeries. hypertonia in or more limbs is also common; early treatment using multimodal approaches can often manage spas- ticity and prevent contractures, particularly in the lower extremity, and reduce the need for costly tendon-lengthening surgeries. second, providing accurate assessments of doc level and treatments to facilitate conscious recovery is critical. diagnostic errors can have severe adverse consequences for persons with doc including pessimistic prognoses, reduced access to rehabil- itative treatment when it should be indicated, prolonged treatment when it should be contraindicated, and inappropriate medicolegal judgments or nf placements. , , , , the american congress of rehabilitation medicine (acrm) recommends the use of stan- dardized assessment measures with item content that covers consensus-based doc diagnostic criteria because they provide more sensitive and reliable diagnoses than unstructured approaches. - clinicians with training and experience with persons with doc would likely be better able to administer rec- ommended measures, differentially account for diagnostic confounds (eg, intraday fluctuations in arousal; underlying sensory, motor, and/or language deficits; effects of sedating medications), and derive accurate diagnoses. third, facilitating patients’ safe discharge to a private residence versus an nf placement is critical. when patients are medically stable but do not emerge from doc, many families desire to care for their loved one at home. providing comprehensive education, hands-on training, and ongoing programmatic support after discharge helps families with life care planning, identifying and responding to emerging medical conditions, and reducing nf placement. further, ongoing supports help families manage the emotional burden of care that often includes prolonged grief, anxiety, depression, and social isolation. , this study describes our efforts to establish a specialized early doc treatment program for patients and their families, and evaluate the model’s effectiveness. first, we present the program’s components using the world health organization’s international classification of functioning, disability and health (icf) framework. we include data on the types and frequencies of diagnostics, procedures, and program interruptions and their causes (ie, surgeries performed, nonsurgical complications requiring intensive care unit [icu] transfers). second, we report data on infections and secondary conditions on admission and acquired during their program stay. third, we evaluate patients’ functional outcomes including mental, respiratory, hypertonia, skin, and self-care. global outcomes including emergence into consciousness, length of stay (los), charges, and discharge disposition are also reported. last, we discuss and recommend necessary components for an effective, specialized early doc treatment model and the benefits for patients, families, and health care system cost avoidance. methods participants consecutive persons with acquired brain injuryerelated doc admitted over a -year period from january , , through december , , were eligible for inclusion (nz ). ten patients who emerged from an mcs and transitioned to traditional list of abbreviations: acrm american congress of rehabilitation medicine crs-r coma recovery scaleerevised ctrs certified therapeutic recreation specialist doc disorders of consciousness dvt deep vein thrombosis icf international classification of functioning, disability and health icu intensive care unit itb intrathecal baclofen ivc inferior vena cava le lower extremity los length of stay mas modified ashworth scale mcs minimally conscious state nf nursing facility ot occupational therapist pt physical therapist slp speech-language pathologist tbi traumatic brain injury ue upper extremity us ultrasound uti urinary tract infection vs vegetative state specialized early treatment for disorders of consciousness www.archives-pmr.org http://www.archives-pmr.org table summary of diagnostic criteria for coma, vs, mcs, and emerged from mcs condition description of consciousness visual function motor function auditory function communication coma* persistent unconsciousness absence of spontaneous eye opening/ sleep-wake cycle no purposeful responses to environmental stimuli not present, ie, eyes remain continuously closed reflexive and postural activity no discrete or localizing responses to stimuli not present, ie, no startle response to sound not present, ie, no expressive behavior or language comprehension vsy persistent unconsciousness intermittent arousal, ie, periodic spontaneous or stimulus-induced eye opening no sustained, reproducible, purposeful responses to environmental stimuli no voluntary activity reflexive startle response to visual stimuli brief, nonpurposeful or reflexive visual fixation postures or withdraws from noxious stimuli periodic nonpurposeful or reflexive activity reflexive startle response to auditory stimuli brief, reflexive orienting to sound brief, nonpurposeful or reflexive vocalizations, crying, or smiling no language comprehension mcs z partial consciousness inconsistent but clear and reproducible behavioral evidence of awareness of self or environment inconsistent but clear and reproducible, purposeful responses to environmental stimuli, ie, after simple commands visual pursuit or sustained fixation in direct response to moving or salient stimuli reaching for objects that demonstrates a clear relationship between object location and direction of reach localizing response to noxious stimuli touching or holding objects in a manner that accommodates the size and shape of the object vocalizations or gestures that occur in direct response to the linguistic content of comments or questions intelligible verbalization gestural or verbal yes/no responses (accuracy not required) crying, smiling, or laughing in response to the linguistic or visual content of emotional stimuli emerged from mcs z full consciousness consistent behavioral evidence of awareness of self or environment, ie, functional object use or functional interactive communication reliable, functional object use, ie, appropriate use of at least different items on at least different occasions reliable, interactive communication, ie, accurate yes- no responses to situational orientation questions * plum and posner diagnosis criteria of coma. y american academy of neurology multi-society task force definition of the persistent vegetative state. z aspen workgroup definition and diagnostic criteria of the minimally conscious state. r.t. seel et al www.archives-pmr.org http://www.archives-pmr.org rehabilitation within days of admission were excluded. the final sample was . all data in this study are from patients’ specialized early doc treatment stays; that is, data are not re- ported from patients’ icu or traditional rehabilitation stays. interventions: specialized early doc treatment program overview our program is designed for patients in vs and mcs, and their families. the program is funded at an acute medical level of care to treat primary and secondary conditions and provide continual skilled nursing ( h/d, d/wk) for monitoring and all basic care activities. acute medical care is augmented with a minimum of daily minutes of interdisciplinary rehabilitation to facilitate functional communication and recovery of consciousness, and provide mobilization therapies (eg, out of bed, daily routine, physical interventions) to promote body function and reduce complications secondary to inactivity and deconditioning. comprehensive education, hands-on training, and case manage- ment are provided to foster family preparedness for patients’ home discharge. our doc program is based at the shepherd center in atlanta, georgia, which is a medical rehabilitation center that primarily treats persons who have sustained severe acquired neurologic injuries. the center has inpatient beds of which are dedicated to persons with brain injury. the center has onsite icu and imaging services and is physically connected to piedmont hospital, a level ii trauma center, which provides efficient access for patients who demonstrate rapid decline and/or require intra- cranial pressure monitoring or invasive procedures. interdisci- plinary team members include a physiatrist, a nurse, a dietitian, a respiratory therapist, a physical therapist (pt), an occupational therapist (ot), a speech-language pathologist (slp), a neuropsy- chologist, a certified therapeutic recreation specialist (ctrs), rehabilitation technologist, a family counselor, a case manager, a disability advocacy specialist, and a chaplain. contract staff includes physicians and medical professionals from neurosurgery, pulmonology, cardiology, internal medicine, orthopedics, and imaging who provide consultations. admission process regional access case managers identify potential admissions from intensive and acute care hospitals and coordinate referrals. admission screening criteria target persons years and older who in the access case manager’s judgment have a doc based on at least of the following: rancho level of to or mcs or vs or patient not visually tracking or not following commands. other admission considerations include families’ interest in having the patient discharged to their home if they do not emerge from an mcs, families’ willingness to participate in education and hands- on training, and payment for services. payers are typically managed care companies and workers’ compensation. on rare occasions, medicaid will approve the service. patients who require intracranial pressure monitoring do not meet our admis- sions criteria. patients may be admitted to our icu first or directly to our doc program. in the first hours after admission, the interdis- ciplinary team extensively assesses the scope and dynamics of persons with doc care needs. the physiatrist, nurse, and dietitian are among the first to evaluate the patient. secondary conditions are evaluated, and specialists are consulted as needed. patients are treated with seizure prophylaxis when indicated using published guidelines. sedating medications are weaned as appropriate. the team establishes daily routines including a nutrition and weight maintenance plan (eg, tube feeding, intravenous nutri- tion, dietary modification), bowel and bladder management, weight shifts and turning schedules, skin care and/or moni- toring, oral hygiene, and improving sleep cycles. , individu- alized toileting routines (eg, intermittent or continuous catheterization; suppositories) are started early during the stay to promote routine void and movements that can reduce therapy session interruptions. slps typically administer the coma recovery scaleerevised (crs-r) to hours after admis- sion to allow for sedating medications used on transfer to clear. an ot and a pt evaluate physical function and hypertonia. pain/ nociception is challenging to assess in the doc population. when indicative signs are observed, the team uses conservative interventions, which may include positioning, modalities, and nonsedating medications. , acute medical management the interdisciplinary team focuses on the treatment and preven- tion of secondary conditions of primarily nervous system, cardiovascular, respiratory, digestive, musculoskeletal, and skin origin. all team members are responsible for monitoring patients for signs of diminished functioning, physiological changes, infections, new or worsening symptoms, or behaviors that could indicate the presence of pain. imaging tests are used on a case-by- case basis to identify or rule out secondary conditions and inform the treatment plan. initial treatment approaches are typically conservative. invasive procedures, icu transfers, and surgeries are performed when patients’ conditions are deteriorating and have not responded to conservative treatments. with regard to respiratory care, chest x-rays are standard early after doc program admission. ventilator weaning is conducted after therapy hours in our icu, supervised by the attending pul- monologist and implemented by the nursing staff. telemetry monitoring for vital signs is used for patients with a tracheostomy as well as others at risk should an airway become compromised. overnight pulse oximetry is used to monitor persons with obstructive sleep apnea and other respiratory conditions to help guide decisions on decannulation. when persons meet criteria, tracheostomy collar weaning involves downsizing the tracheos- tomy and transitioning from heat and moisture exchanger to plugging and then to button if needed before full decannulation. doppler ultrasound (us) of patients’ lower extremities is standard; upper extremities are tested when indicated. hemato- logic abnormalities, notably diabetes and sepsis, are screened and treated. with regard to digestive conditions, imaging (eg, kidneys- ureters-bladder radiography, modified barium swallow study, abdominal us/computed tomography) is frequently used, and invasive procedures are performed for feeding tube placements, replacements, or revisions. neuromusculoskeletal and movement-related imaging tests are common given the traumatic nature of most injuries, the need for fracture management, the discovery of previously undiagnosed fractures, and hypertonia. an interdisciplinary approach is used for the treatment of hypertonia. the modified ashworth scale (mas) and goniometer for passive range of motion are used to assess symptomatic limbs and serially evaluate intervention effects. serial casting, splinting, and stretching/passive range of motion are routinely used as a first-line treatment for both upper and lower extremities, with casts reapplied every to days. - specialized early treatment for disorders of consciousness www.archives-pmr.org http://www.archives-pmr.org oral medications (eg, dantrolene sodium, baclofen oral suspen- sion) may be used when hypertonia is systemic. botulinum toxins are used to treat severe or worsening cases; nerve blocks are used primarily as a treatment/diagnostic for contracture severity. - when conservative treatments are ineffective and the risk of contractures becomes high, itb trials are tested and if the results are encouraging, itb pumps are placed. lastly, skin care and pressure ulcer prevention are closely monitored and treated aggressively. rehabilitative treatments: functional communication and recovery of consciousness the interdisciplinary treatment team uses an integrated approach to deliver rehabilitative treatments with an emphasis on facili- tating recovery of consciousness and improving patient posi- tioning and mobility (table ). repetition is frequently used to develop habitual responses. promoting arousal and interactive communication is interspersed across all therapies and interactions with patients. stimulant medications, when not contraindicated, are prescribed early in the treatment course. amantadine hydrochloride is routinely used as a first-line treatment to promote faster recovery of consciousness. , amantadine is used alone or in combination with other medications; administration is titrated slowly. the team formally assesses patients with the crs-r. , slps document patient scores weekly. the crs-r rate of improvement during the first weeks in our doc program is used as a general benchmark to estimate when the person might emerge from consciousness and to inform discharge planning. the crs-r is also used to guide treatment interventions. for example, the team identifies the modalities and levels in which the patient is most responsive and then targets therapeutic treatment on behaviors at the next ascending level of difficulty. during therapies, the staff presents repetitive stimulus opportu- nities on intact sensory modalities to increase response consis- tency. visual sensory stimulation may include use of computer programs, bright objects, pictures of familiar people, and mirrors to reflect their whole body and face. auditory sensory stimula- tion may include using an ipod a to present familiar sounds, voices, and music. functional interaction may include command- following, self-care, and functional object use. tactile stimula- tion may include moving patients to be prone, side lying, or seated on mats. the ctrs introduces music and pet therapies in an attempt to engage recognition and responses from the patient. multisystem stimulation, when not contraindicated, is routinely used for persons in vs and mcs throughout the doc program. for example, a person in mcs with some head control might be placed on a tilt table or standing frame while selecting named table rehabilitative treatments reported by icf activities and participation icf activities/participation assessments primary interventions d . learning and applying knowledge basic watching and listening ability; visual and auditory tracking establishing appropriate environment and reducing distractions repetition to encourage habitual or conditioned responses d . communication crs-r, level of consciousness sensory screen identify intact/effective modes (gestures, vocalizations, verbalizations, eye gaze) assistive technology consult medication multisystem stimulation; sensorimotor stimulation; visual and auditory input; occlusion techniques; amplifiers augmentative assistive communication devices cause/effect switch use d . mobility optimal positioning including head, back, arm, and leg supports seating clinic; specialty cushion, padding positioning and facilitation (bed and wheelchair); sitting balance weight-bearing activities; neuromuscular developmental activities/ proprioceptive input strengthening neck, trunk, extremities; modalities assistive mobility equipment orientation d . self-care grooming (eg, face washing, hair/teeth brushing); bathing; dressing; eating; toileting; transfers orientation to activities appropriate hand and body positioning functional object recognition and use; hand-over-hand repetitive training d . interpersonal interactions & relationships observation of social interactions encourage family and friend interaction with patient using optimal communication strategies d . community, social, & civic life observation of patient interactions and the community environment orientation to community outings; managing (over)stimulation managing care in community activities (eg, restaurant) note. the icf activities d (general tasks & demands), d (domestic life), and d (major life areas) do not apply to the doc population at this level of care. r.t. seel et al www.archives-pmr.org http://www.archives-pmr.org table family interventions reported by icf learning activities and environmental factors icf activities/environment assessments primary interventions d . learning and applying knowledge family understanding of doc and medical conditions ability and willingness to provide hands-on patient care and management family preparation for home placement crs-r assessments, level of consciousness, managing expectations, prognosis interacting with patient (eg, optimal modes, appropriate content, allowing time to respond), sensory stimulation bowel and bladder (eg, verbalize program, catheter use, cleaning techniques, suppository use, indicators for medical consult) skin care (eg, checks, prevention techniques, turn schedule, positioning, wound management) nutrition/tube feeding (eg, regimen, caloric intake measurement, medications, tube cleaning and maintenance, nutrition adjustments, indicators for medical consult) respiratory care (eg, cpr, tracheostomy site care, deep suctioning techniques, use of yankauer tube, clean replace equipment) general medical monitoring (eg, vital signs; seizures, pain management; signs, symptoms of storming) transfers (eg, lifting body mechanics, positioning, hoyer equipment, manual use) hypertonia (eg, prom exercises, identify spasticity/tone, splint schedule/ application/removal, indicators for medical consult) other adls (eg, bathe, groom, dress, oral care) e . products & technology nutrition and medication needs assistive technology consult, seating clinic; vehicle evaluation evaluation of home modifications needed for patient access and basic care medical care plans (eg, prescription list, nutrition plan, home care instructions from all disciplines) obtain and maintain appropriate wheelchair, aac devices, tub/toilet equipment, hoyer lift, bed modifications (eg, vehicle, community access, home equipment, structural modifications) e . natural environment & human-made changes to environment evaluation of environmental modifications needed for patient stimulation and rest managing environment/stimulation/rest to optimize patient behavior and safety e . support & relationships family and personal support system; self-advocacy and patient advocacy social media (eg, shepherd cares page; facebook), community outreach personal care and respite arrangements professional and peer counseling, support groups e . attitudes family and support system attitudes and understanding of doc training on communicating needs and expectations to the wider family and community (continued on next page) specialized early treatment for disorders of consciousness www.archives-pmr.org http://www.archives-pmr.org objects/people or demonstrating object function during an auto- matic motor activity (eg, brushing teeth, feeding). rehabilitative treatments: mobilization and activities initiating patient mobilization and activities helps restore bodily integrity and reduces the risk of complications (eg, infection, dvts, skin breakdown). , for patients who reach mcs, increased time is spent on delivering therapies targeted at increased mobility and self-care activities (see table ). families identify activities and interests that are familiar to the patient to include in the treatment plan. the interdisciplinary team attempts to engage patients in repetition tasks related to self-care, sitting balance, transfers, and community mobility. planned rest (ie, back to bed) is scheduled between therapies to lessen fatigue and overstimulation. when patients are medically stable and can tolerate extensive stimulation, the team engages the patient and family in community outings. the combination of hypertonia management, physical therapies, and repetitive self-care activities delivered at the acute medical level of care also facilitates patients’ functional readiness to participate in traditional rehabil- itation, which can lead to more efficient and effective utilization of therapies, shorter rehabilitation stays, and cost savings for the payer. , family education comprehensive education and training is provided to all families, individualized based on each patient’s level of consciousness, secondary conditions, and estimated disposition (table ). temporary housing in the center’s -unit family living center is provided to facilitate family members’ engagement and partici- pation in education and training. methods used include didactic classroom training, medical conferences, hands-on training, staff modeling of techniques, train the trainer, and supervised family- led overnight stays in the transitional living apartment and community outings. for medical care topics that may be covered, see table . case management is critical to successful home placement, reduced caregiver burden, and reduced risks of rehospitalization and nf placement. case management helps families to proac- tively anticipate the patient’s needs on return home; identify and coordinate durable medical equipment, assistive technology, and home modification needs; establish instrumental and emotional community supports; and, identify and link families to local medical services. a disability advocacy specialist works with the family to compile, complete, and submit supplemental security income and social security disability insurance applications as necessary. discharge planning the case manager coordinates discharge decisions with the treatment team, family, and payer. criteria for transition to traditional tbi rehabilitation include recovery of consciousness and the ability to participate in hours of rehabilitation. recovery of consciousness and rehabilitation readiness criteria generally consider functional object use and consistent, accurate functional communication per aspen workgroup guidelines. for persons who do not emerge from an mcs, staff and family collaboratively decide whether to discharge to the home setting based on the patient’s medical acuity, the family’s ability to provide care, and access to nf placement. los is determined on a case-by-case basis in coordination with the family and the payer. the patient’s medical stability and anticipated or actual recovery of consciousness are the primary drivers of los. persons who have not emerged from an mcs and are discharged home typically have a stay of at least to weeks in order to ensure medical stabilization, deliver family education and training, and implement recommendations for assistive technology, durable medical equipment (eg, appropriate wheelchair type, hospital bed, respiratory needs), and home modifications. postdischarge programmatic support families who take their loved one with doc home receive tele- health support biweekly for to months (ie, e telehealth visits total). telehealth helps the family to monitor recovery of consciousness including supervising and providing feedback on family administration of the crs-r. medical conditions commonly addressed include hypertonia management (eg, the splints no longer fit because of weight gain; improvement or worsening of tone; skin problems) and feeding tube issues (eg, tube is blocked, skin irritation at insertion point, cannot deliver certain medications down the tube, tube is becoming loose). tel- ehealth also assists with practical issues such as making recom- mendations for easing the burden of patient care or equipment and supply issues (eg, wrong equipment delivered; supplies have not arrived). telehealth is essential to meet caregivers’ information and communication needs, prevent serious complications, avoid unnecessary emergency department visits, and reduce health care system costs associated with rehospitalizations or nf placement. , table (continued) icf activities/environment assessments primary interventions e . services, systems, & policies rehabilitation, home or nf discharge plan support services needs assessment medical supports (eg, home health care, single service outpatient, follow-up physician appointments) disability planning (eg, onsite advocacy specialists, life care planning, case management, telehealth) community resources, services (eg, vendors, transport, counseling) abbreviations: aac, augmentative and alternative communication; adls, activities of daily living; cpr, cardiopulmonary resuscitation; prom, passive range of motion. r.t. seel et al www.archives-pmr.org http://www.archives-pmr.org measures the crs-r is a bedside assessment tool for differentiating levels of consciousness. it is composed of subscalesdauditory, visual, motor, oromotor/verbal, communication, and arousald with dichotomously scored items. the item content of the crs-r allows for tabulating a total score of to , identifying ascending levels of conscious behavior/ability, and using a combination of items to differentiate vs from mcs from emerged from an mcs based on the multi-society task force on persistent vegetative state and aspen workgroup criteria. an acrm practice parameter recommends use of the crs-r based on its standardized administration and scoring procedures, item content, and interrater and test-retest reliability. , , the mas is a -point rating scale that is used to assess muscle spasticity, with ratings from (“no increase in muscle tone”) to (“affected part rigid in flexion or extension”). the mas measures muscle resistance in velocity-dependent movements, passive joint range of motion, and muscle strength. the mas has acceptable interrater reliability and has been used as a primary outcome measure in hypertonia clinical trials. , skin breakdown (ie, pressure ulcers) was recorded based on wound consult reports and coded in the medical record as stage , , or based on standard protocol. self-care activities assessed throughout the stay are face washing, hair brushing, dressing upper extremity, eating, teeth brushing, bathing, dressing lower extremity, and toileting. ther- apists use rating categories to denote patients’ level of depen- dence (ie, dependent, maximum assist, moderate assist, minimum assist). charge data were electronically pulled from hospital admin- istrative data for the dates in which patients were treated in our doc program and include all billable charges (eg, daily rates, procedures, medications). data represent actual charges without time value of money or inflation adjustments. data collection the study design is a single-center, retrospective, pre-post analysis of patients’ doc program stays using standardized variables in the electronic medical record data supplemented with abstraction of select data variables from text located in either electronic or paper clinical reports. families provided consent at admission for deidentified medical record data to be used for research and program evaluation purposes. the host institution’s research review committee approved the study. all data were collected from the electronic and paper medical records by trained abstractors. data prospectively recorded in the electronic medical record include weekly crs-r scores, respiratory function, mas, and self-care activities. demographics, injury type, days from injury to program admission, los, payer, discharge disposition, diagnostic imaging, surgeries, procedures, nonsurgical interrup- tions, pressure ulcers, and infections data were abstracted from the electronic or paper medical record. ninety-six percent of admission crs-r scores were rated within days of doc program admission. if the crs-r discharge evaluation was not completed (nz ) and the last available score was rated more than days before discharge, then an slp (j.d.) reviewed the discharge clinical notes to determine whether there was definitive behavioral evidence of improvement or decline between the last crs-r rating and discharge. crs-r discharge scores for % of the sample (nz ) reflect behavioral evidence from the discharge clinical notes. statistical analyses all data entry and analyses were conducted using the spss version . .b descriptive statistics were calculated for patient and injury characteristics, imaging, on-floor procedures, icu transfers, surgeries, infections, crs-r subscale and total scores, respiratory functioning, mas scores, skin breakdown, and self-care activities. wilcoxon signed-rank tests were calculated to compare doc program admission and discharge scores on ordinal-based measures including crs-r subscales, mas, and self-care activity scores. findings were considered statistically significant using an alpha level of p<. . table patient characteristics (nz ) characteristics values age (y) . � . sex (men) race white black/african american unknown/other hispanic ethnicity health insurance payer managed care workers’ compensation military/tricare self-pay medicaid primary brain injury type traumatic vehicular ( ) falls/flying objects ( ) violence ( ) pedestrian ( ) sports ( ) other ( ) anoxic cerebrovascular accident/other acquired transferring facility level of care acute care long-term acute care hospital other (eg, nf, vamc, home) initial admission level of care icu specialized doc program days postinjury at doc program admission . � . e e e e level of consciousness coma vs mcs note. values are mean � sd or percentages. abbreviation: vamc, veterans affairs medical center. specialized early treatment for disorders of consciousness www.archives-pmr.org http://www.archives-pmr.org results patient and injury characteristics patient and injury characteristics are described in table . the sample was predominately young (mean age � sd, . � . y), men ( %), and white ( %) who almost exclusively had commercial payers ( %). most ( %) sus- tained a traumatic etiology secondary to motor vehicle colli- sions, and % were admitted > days postinjury. based on the crs-r, % were in a coma, % were in vs, and % were in mcs. imaging, primary acute medical treatments, and program interruptions in our sample of , secondary conditions led to inter- ruptions for surgeries and an additional interruptions for nonsurgical transfers to intensive care settings. overall, % of patients (nz ) had at least doc program interruption attributable to surgery ( %), a nonsurgical icu transfer ( %), or both ( %). twenty-three percent had program interruptions (ie, % nonsurgical icu transfer, % surgery) because of neurologic complications. additionally, % were transferred to table number of imaging studies and treatments reported by icf functions and structures icf functions and structures total no. % patients mental/nervous system imaging/diagnostics brain/head: ct ( ), mri ( ), eeg ( ) icu transfer, n-s fever/storming seizure hydrocephalus surgeries cerebral shunts: vp ( ), vp revision ( ), lp ( ) puncture: lumbar ( ), dural ( ) subdural hygroma drainage cranioplasty abscess drainage/debridement nerve decompression cervical arachnoid cyst < sensory systems surgery eye surgery < cardiovascular, hematologic, immunologic, & respiratory systems imaging chest: x-ray ( ), ct ( ) dvt lower extremity, doppler us dvt upper extremity, doppler us bronchoscopy/laryngoscopy* cardiovascular: ecg ( ), carotid, artery us ( ) procedures blood transfusion intubation < icu transfer, n-s cardiovascular respiratory sepsis < surgeries tracheal resection, excision of stenosis ivc filter placement other (ie, tracheotomy, chest tube, arterial) digestive, metabolic, & endocrine systems imaging kub/abdominal: x-ray ( ), us ( ), ct ( ) modified barium swallow study endoscopy ( ), fees ( ) feeding tube nos surgeries feeding tube placement/revision abdominal (ie, gi, ex-lap, bone flap removal) genitourinary & reproductive systems imaging genitourinary: us ( ), ct ( ) icu transfer, n-s renal failure < table (continued) icf functions and structures total no. % patients neuromusculoskeletal & movement- related systems imaging extremities/hips: x-ray ( ), ct ( ), mri ( ) spine: x-ray ( ), mri ( ), ct ( ) skull/facial/jaw: x-ray ( ), ct ( ) emg itb pump dye study procedures botox injection baclofen trial nerve block (phenol, ; marcaine, lidocaine, ) surgeries itb pump placement hardware removal achilles’ tendon lengthening other: orthopedic, skull, laminectomy skin & related structures surgeries skin flap surgery abbreviations: ct, computed tomography; ecg, electrocardiogram; eeg, electroencephalogram; emg, electromyogram; ex-lap, exploratory laparotomy; fees, fiberoptic endoscopic evaluation of swallowing; gi, gastrointestinal; kub, kidneys-ureters-bladder; lp, lumbar-peritoneal; mri, magnetic resonance imaging; n-s, nonsurgical; nos, not other- wise specified; vp, ventriculoperitoneal. * fees swallow studies evaluate vocal cords (voice) and swallow (digestive); bronchoscopies/laryngoscopies/evaluate vocal cords (voice) and airway for obstruction (respiratory). r.t. seel et al www.archives-pmr.org http://www.archives-pmr.org the icu for cardiovascular or respiratory complications, while % had surgery (eg, tracheal complications, ivc filter place- ments). thirteen percent had feeding tube placements or revisions, or other abdominal surgeries. neuromuscular procedures and surgeries predominately focused on extracra- nial injuries sustained in motor vehicle collisions and hyper- tonia management. six patients had skin flap surgeries. a summary of all patient imaging tests and medical treatment received for common secondary conditions (ie, procedures, icu transfers for nonsurgical treatment, and surgeries) is presented in table . infections, positive cultures the frequency of infections and positive cultures is shown in table along with the proportions of infections that were caused by antibiotic-resistant bacteria. notable infections at admission include pneumonia ( %), urinary tract infection (uti, %), blood ( %), and cerebrospinal fluid and brain ( %). with the exception of uti, the frequency of new infections or positive cultures was markedly less during their doc program stay. mental function outcomes crs-r admission and discharge subscale scores are reported in table . at the time of admission, % of patients were unarous- able, % had no visual fixation or pursuit, and % had abnormal motor reactivity. further, % of patients had crs-r total scores � . persons with doc showed improvement (p<. ) from admission to discharge on all subscales. at discharge, % emerged from mcs based on the aspen criteria for functional object use ( %), accurate functional communication ( %), or meeting both criteria ( %). body function and structures at admission, % were admitted with modifications to their airway including % with a tracheotomy collar, % with a tracheotomy hygroscopic condenser, % with a tracheostomy plug, and % receiving mechanical ventilation. improved respi- ratory status (p<. ) was observed at discharge; % were within normal limits without modifications, while % still required mechanical ventilation. table infections, positive cultures at admission and acquired during stay (nz ) infection location and bacterial resistance % admit % acquired body system any infection respiratory upper respiratory pneumonia uti blood stool csf, brain wound, skin ear, eye antibiotic-resistant bacteria any resistant bacteria mrsa pseudomonas (resistant) acinetobacter (resistant) vre clostridium difficile klebsiella (esbl) klebsiella (resistant/kpc) escherichia coli (esbl) e coli (resistant) abbreviations: csf, cerebrospinal fluid; esbl, extended-spectrum beta- lactamase; kpc, klebsiella pneumoniae carbapenemase; mrsa, methicillin-resistant staphylococcus aureus; vre, vancomycin-resistant enterococci. table mental function outcomes based on the crs-r (nz ) crs-r scales/items % admit % dc p auditory <. none auditory startle localization to sound m reproducible move to command m consistent move to command visual <. none visual startle m fixation m visual pursuit m object localization: reaching m object recognition motor <. none/flaccid abnormal posturing flexion withdrawal m localization to noxious stimulation m object manipulation m automatic motor response e functional object use oral motor/verbal <. none oral reflexive movement vocalization/oral movement m intelligible verbalization communication <. none m nonfunctional: intentional e functional: accurate arousal <. unarousable eye opening with stimulation eye opening without stimulation attention note. all admit versus discharge comparisons based on wilcoxon signed-rank test. percentages may not add to % because of rounding. abbreviations: dc, discharge; e, behavioral indicator of emergence from mcs based on aspen workgroup criteria; m, behavioral indicator of mcs based on aspen workgroup criteria. specialized early treatment for disorders of consciousness www.archives-pmr.org http://www.archives-pmr.org at admission, % had an upper extremity (ue) dvt, and % had a lower extremity (le) dvt. during their stay, % acquired a ue dvt, and % acquired an le dvt. with regard to the skin, % (nz ) were admitted with pressure ulcers: stage (nz ), stage (nz ), and stage (nz ). one patient acquired a pres- sure ulcer (stage ) during the program. at discharge, % (nz ) of admission pressure ulcers were healed. thirteen patients were discharged with pressure ulcers at stage (nz ) and stage (nz ). excluding persons with flaccid tone, admission and discharge mas scores for each extremity are reported in table . overall, % of patients (nz ) had marked hypertonia in at least extremity at admission. at discharge, patients showed improved hypertonia in their right ue (pz. ) and left ue (pz. ). no improvement or worsening of hypertonia was shown at discharge for the le. self-care activities and transfers admission and discharge self-care activity and transfers ratings are reported in table . at admission, almost all patients were dependent on self-care activities and transfers. at discharge, patients made improvements in all activities except for toileting. patients were most able to provide modest levels of assistance on face washing ( %), hair brushing ( %), ue dressing ( %), and teeth brushing ( %). discharge level of consciousness, los, charges, and disposition patients’ discharge levels of consciousness and associated stays, charges, and dispositions are reported in table . overall, % of persons emerged from an mcs based on both aspen criteria, and another % emerged based on of criteria. about % remained in vs at discharge. the mean table hypertonia outcomes based on the mas mas ratings by extremity % admit % dc p rue (nz ) . normal tone slight increase; min resist at end range þ slight increase; min resist through rom marked increase through rom considerable increase; movement difficult rigid in flexion or extension < lue (nz ) . normal tone slight increase; min resist at end range þ slight increase; min resist through rom marked increase through rom considerable increase; movement difficult rigid in flexion or extension < rle (nz ) . normal tone slight increase; min resist at end range þ slight increase; min resist through rom marked increase through rom considerable increase; movement difficult rigid in flexion or extension < lle (nz ) . normal tone slight increase; min resist at end range þ slight increase; min resist through rom marked increase through rom considerable increase; movement difficult rigid in flexion or extension note. admit versus discharge mas comparisons based on wilcoxon signed-rank test; persons with hypotonic/flaccid limbs were not included in the analysis. abbreviations: dc, discharge; lle, left lower extremity; lue, left upper extremity; min, minimal; rle, right lower extremity; rom, range of motion; rue, right upper extremity. table self-care activities outcomes activities, ratings % admit % dc p face washing (nz ) <. dependent maximum assist moderate assist minimum assist hair brushing (nz ) <. dependent maximum assist moderate assist minimum assist dressingeue (nz ) <. dependent maximum assist moderate assist minimum assist eating (nz ) . dependent maximum assist moderate assist minimum assist teeth brushing (nz ) . dependent maximum assist moderate assist minimum assist bathing (nz ) . dependent maximum assist dressingele (nz ) . dependent maximum assist toileting (nz ) . dependent maximum assist transfers (nz ) <. dependentehoyer dependentemanual maximum assist moderate assist note. admit versus discharge self-care comparisons based on wilcoxon signed-rank test. abbreviation: dc, discharge. r.t. seel et al www.archives-pmr.org http://www.archives-pmr.org los was . days (range, e d), and the mean charge was $ , . fifty-four percent transitioned to traditional inpa- tient rehabilitation, while % were discharged home with family and programmatic support; % were discharged to an nf. persons who emerged from mcs had a shorter los, less charges, and were far more likely to transition to traditional inpatient rehabilitation. discussion there is considerable debate regarding the treatment needs of persons with doc and the optimal clinical care and setting to improve outcomes and reduce the risk of long-term severe disability and institutionalization. only studies , were identified that provided incidence data on doc medical acuity after intensive care within months of onset. our study replicates and extends the evidence base that persons with doc caused primarily by a traumatic etiology have widespread secondary conditions that occur at fairly equivalent incidence rates compared with previous study results (noted in parentheses in italics) and include the following: . neurologic: % abnormal motor reactivity, % dysautono- mia/storming; % cerebral infections; % icu nonsurgical transfers; and % cerebral shunts/revisions, punctures, and drains ( % abnormal motor reactivity, % and % fever of central origin, , and % cerebral shunts ) . respiratory: % requiring decannulation, % requiring ventilator weaning, % pneumonia, % nonsurgical icu transfers, and % tracheal surgeries ( % and % tracheos- tomies , and % pneumonia ) . cardiovascular: % ue dvt, % le dvt, % nonsurgical icu transfers, . % ivc placement, and % arterial surgery . digestive: % enteral feeding, % bowel management, % uti, and % feeding tube revisions or replacements ( % enteral feeding, % bowel management, and % utis ) . hypertonia: % marked hypertonia, ie, mas� , in at least limb; serial casting first-line treatment; % botulinum toxin a; % itb trial; % nerve blocks; % itb pump place- ments; and . % tendon-lengthening surgeries ( % consid- erable hypertonia, ie, mas� , in at least limb ) . skin: % admitted with stage to pressure ulcers, % skin flap surgeries in our sample of patients, % had at least doc program interruption because of either surgery or a nonsurgical icu transfer. these data are consistent with doc specialty program data from an acute setting in which % of patients also required transfer to an acute facility for temporary management of medical issues such as sepsis, status epilepticus, neurologic procedures, and/or deterioration. despite high medical acuity coupled with low levels of conscious functioning at admission, our study provides evidence that persons treated in a specialized early doc acute medical level of care program with � minutes of daily rehabilitation showed improvements in arousal; auditory, visual, and motor response; verbalization and functional communication; respiratory airway function; right and left ue hypertonia; pressure ulcers; and in their ability to assist with face washing, hair brushing, ue dressing, teeth brushing, and transfers. at discharge, % showed or more signs of emergence into full consciousness, which replicates the % emergence rate reported by groswasser and colleagues in a sample of patients with disordered consciousness of or more days. consistent with the literature, persons who emerged from mcs at discharge were more likely to have a traumatic etiology, higher admission crs-r total scores, and fewer days postinjury than persons discharged in vs. - our study also provides evidence that % of persons treated in an early specialized doc treatment program had sufficient medical stabilization and recovery of consciousness to transition to mainstream inpatient rehabilitation care, where they likely had further short- and long-term functional recovery and reduced disability. persons who did not emerge were . times more likely to be discharged home with family members ( %) than to an nf. importantly, only % of persons receiving early specialized doc treatment were institutionalized at discharge. this discharge to home versus nf ratio translates into significant long-term cost avoidance to the health care system. also, persons in a specialized early doc treatment program had no deaths and very low rates of severe secondary conditions (eg, only acquired pressure ulcer [stage ], only discharged who required mechanical ventilation, and only with grade hypertonia), which further translates into health care system cost avoidance and reduced risk of litigation. based on our findings, previous study results, and consensus- based recommendations in the literature, , , , - we summarize essential standards of care for effective, early treatment of doc (table ). for each standard, we summarize primary patient- and table specialized doc program los, costs, and disposition reported by discharge aspen consciousness levels (nz ) discharge aspen level % etiology admit admit doc program disposition trauma crs-r dpi los (d) charges* ($) ir home nfy medz all levels . � . . � . . � . , � , emerged, criteria present . � . . � . . � . , � , emerged, criterion present x . � . . � . . � . , � , mcs . � . . � . . � . , � , vs . � . . � . . � . , � , note. values are mean � sd or percentages. abbreviations: dpi, days postinjury; ir, traditional inpatient rehabilitation program; med, medical. * charges based on nz . y includes skilled nursing, assisted living, and personal care residential facility. z medical level of care and includes acute care, veterans administration program not specified, and long-term care hospital. x nz met functional object use criteria; nz met functional/accurate communication emergence criteria. specialized early treatment for disorders of consciousness www.archives-pmr.org http://www.archives-pmr.org family-centered outcomes and potential health care system bene- fits gained from early specialized doc treatment in comparison with suboptimal care. for example, there are wide-ranging bene- fits to early and aggressive treatment of hypertonia, in addition to avoiding contractures and the associated high costs of tendon release surgeries. if the patient emerges from an mcs and tran- sitions to traditional inpatient rehabilitation, the patient with managed tone will be able to participate in and benefit from an array of upper and lower extremity rehabilitation therapies related to self-care activities and transfers that would not be possible with marked tone. improved rehabilitation readiness results in better utilization of the rehabilitation benefit (eg, not spending the first wk on functioning vs. tone management) and health care system cost savings. if the patient does not emerge from an mcs, well- managed hypertonia increases the likelihood that the family will be willing and able to manage the patient at home by reducing caregiver burden related to patient transfers, hygiene, and dressing, as well as distress related to the physical appearance of table primary patient-centered outcomes and health system benefits of doc specialty programs recommended standards of care patient-centered outcomes/benefits health care system outcomes/benefits . optimal medical environment including: a. medical professionals with training and experience in doc to establish the diagnosis and coordinate clinical treatment b. interdisciplinary team integrated in the assessment and treatment of all functions c. onsite access to imaging, pulmonol- ogy, cardiology, neurosurgery, ortho- pedics, wound/ostomy, and icu services accurate diagnosis of level of consciousness, prognosis, and improved recommendations for treatment early detection/assessment/treatment of severe secondary brain complications and infections ventilator and tracheostomy collar weaning and early detection/treatment and prevention of aspiration and respiratory infection reduced diagnostic errors, inappropriate referrals, and inappropriate medical- legal decisions reduced risk of mortality, extended hospitalization, and long-term severe disability due to late identification and response to complications reduced operational costs of icu transfers, hospital stays, and associated costs . prevent and treat secondary conditions (eg, dysautonomia, hypertonia) detection/prophylaxis/treatment of severe cardiovascular complications (eg, dvt) detection/treatment/prevention of skin breakdown improved limb functioning; prevention of tone-related complications (eg, contractures, reduced incidence and severity of skin breakdown) reduced risk of mortality, extended hospitalization, and long-term severe disability reduced risk of contracture and skin surgical costs improved rehabilitation readiness and utilization . maintain bodily integrity (eg, nutrition, oral and physical hygiene, skin care, infection prevention and treatment; bowel and bladder management) improved nutrition management and prevention of malnutrition and muscle wasting improved bowel and bladder management; prevention/early detection of infections/complications; reduced skin breakdown reduced rehospitalization and associated costs reduced renal insufficiency and skin-/wound-related rehospitalization and costs improved rehabilitation readiness and utilization . facilitate functional communication and environmental interaction (eg, pharma- cologic intervention, environmental stimulation) improved arousal, consciousness, and identification of intact sensory and communication modes reduced risk of institutionalization and long-term severe disability; improved utilization of specialized doc program and rehabilitation services . establish functional mobility (eg, postural/positioning, stretching and rom, movement swallowing); promote self-care activities improved mobility, positioning, and strengthening; prevention of complications (eg, skin) improved self-care activities improved rehabilitation readiness and service utilization reduced risk of skin/wound surgical costs . provide family education and support including: a. medical information and hands-on personalized training b. case management for life planning, products, dme, technology, commu- nity supports, and local medical services c. disability advocacy for financial counseling d. postdischarge programmatic support improved family management of doc secondary conditions in the home and community including application of bladder and bowel program, medication administration, transfers, respiratory and nutrition programs, and identification of recovery or emergent complications improved community support and long-term success related to financials (ssi/ssdi; medical support) reduced risk of mortality, institutionalization, rehospitalization, and associated costs improved identification of rehabilitation readiness and service utilization abbreviations: dme, durable medical equipment; rom, range of motion; ssdi, social security disability insurance; ssi, supplemental security income. r.t. seel et al www.archives-pmr.org http://www.archives-pmr.org hypertonic limbs. family members report treatment satisfaction and reduced burden when improvement is observed in physical function (eg, head control, reduced hypertonia, assistance with transfers) as well as communication (eg, eye contact, visual tracking, indications of approval/disapproval, communication device use) and behavior/mood (eg, smiling, decreased “agitation”). the importance of establishing an early standard of care for persons with doc is critical given the federal government’s increasing emphasis on narrowing health access disparities and providing patient- and family-centered care. there remains significant disparity in access to extended acute medical and early rehabilitative treatments for persons with doc because of inten- sive care system knowledge of prognosis and treatment options, specialized program availability, and third-party payer policies. after intensive care, many persons with doc are transferred to an nf. this is consistent with adult trauma population data in which only persons aged to years were more likely to be discharged to an inpatient rehabilitation facility than an nf. adult trauma patients discharged from intensive medical settings directly to an nf have substantial increased risks of mortality compared with discharge to rehabilitation and other settings across all adult age groups, even after controlling for severity indices including discharge functional status, brain injury severity, admission injury severity, mechanism of injury, charlson comorbidity index score, and los. other intensive care longitudinal studies - that have also controlled for severity have reported similar high risks of mortality when patients are dis- charged directly to an nf, but it is unclear to what extent this risk is a surrogate marker of unmeasured severity, premature discharge for services, or difficulty providing the appropriate level of care. given our research findings, it is difficult to envision a stand- alone nf providing optimal care to persons with doc at least within the first to months postinjury. adults with doc tend to be traumatically injured, require mechanical ventilation during their intensive stay, and have very high rates of secondary conditions early after injury, the very factors that place persons at risk for mortality in a skilled nf. it is unlikely that a standalone nf would possess or have immediate access to the level of specialization required to manage medical acuity including dys- autonomia, cerebral swelling, decannulation, tracheal complica- tions, pneumonia, utis, sepsis, dvt monitoring, hypertonia treatment, and pressure ulcers. it would also be difficult for an nf to operationally manage frequent, unplanned offsite transfers to acute settings for diagnostic tests or invasive interventions for these conditions. lack of training and infrequent experience with persons in doc would provide challenges for nf clinical staff when assessing consciousness, differentially accounting for diag- nostic confounds, and observing and interpreting subtle changes that might indicate the presence of a serious condition. future research on specialized early doc treatment programs should examine long-term impacts, cost-effectiveness, and prediction models that match subgroups of patients with the most effective level and setting of care. study limitations there are limitations to inferences that can be made from our pre- post study design when attributing patient improvement to treat- ment program effects. previous research - suggests that hypertonia and pressure ulcers are unlikely to improve, and often worsen, without intervention. therefore, it is reasonable to infer from our data that treatment contributed to improved ue tone, prevention of contractures, pressure ulcer healing, and prevention of new pressure ulcers. while natural recovery likely plays a significant role in recovery of consciousness, treatment in a specialty doc program appears to contribute at least a small to moderate effect related to using effective interventions such as neurostimulants (ie, amantadine). given that there is significant variation in our outcomes (ie, there is a mix of good and subop- timal outcomes reported), there should be only minor concerns related to expectation bias. further, many outcomes were assessed by trained clinicians using measures with standardized adminis- tration and scoring procedures, minimizing measurement error attributable to reliability. lastly, using the discharge clinical note to impute % of crs-r discharge scores likely reflects behav- ioral observations made over a more extended time interval than from a single crs-r administration that uses a more restricted time interval. conclusions persons with doc remain at a high level of medical acuity after intensive care, which should be considered in order to make appropriate early discharge placements. persons with doc caused primarily by a traumatic etiology who are treated in a specialized early treatment program that includes acute medical care and � minutes of rehabilitation daily show improvement in all aspects of conscious functioning, respiratory function, ue hypertonia, pres- sure ulcers, and self-care activities. more than half may be tran- sitioned to mainstream inpatient rehabilitation programs. lastly, families who are provided comprehensive education and hands-on training with follow-up support are likely willing and able to provide care for medically stable persons with 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http://refhub.elsevier.com/s - ( ) - /sref http://www.archives-pmr.org 	shepherd center 	from the selectedworks of kathryn farris 	october , 	specialized early treatment for persons with disorders of consciousness: program components and outcomes 	specialized early treatment for persons with disorders of consciousness: program components and outcomes 	methods 	participants 	interventions: specialized early doc treatment program 	overview 	admission process 	acute medical management 	rehabilitative treatments: functional communication and recovery of consciousness 	rehabilitative treatments: mobilization and activities 	family education 	discharge planning 	postdischarge programmatic support 	measures 	data collection 	statistical analyses 	results 	patient and injury characteristics 	imaging, primary acute medical treatments, and program interruptions 	infections, positive cultures 	mental function outcomes 	body function and structures 	self-care activities and transfers 	discharge level of consciousness, los, charges, and disposition 	discussion 	study limitations 	conclusions 	suppliers 	
references i athens journal of health volume , issue , december articles front pages dimitra loukissa understanding and addressing aggressive and related challenging behaviors in individuals with dementia klaus buttinger & harald stummer imaging and stroke outcome – evidence from upper austria anastasiya sachkouskaya, maria rusalenko, tamara sharshakova & irina savasteeva interrelation of the population awareness of the presence of an increased risk of developing type diabetes mellitus (atiner) (atiner) https://www.athensjournals.gr/ajh https://www.athensjournals.gr/health/cover- - hea.pdf http://www.athensjournals.gr/health/ - - - -loukissa.pdf http://www.athensjournals.gr/health/ - - - -loukissa.pdf http://www.athensjournals.gr/health/ - - - -buttinger.pdf http://www.athensjournals.gr/health/ - - - -sachkouskaya.pdf http://www.athensjournals.gr/health/ - - - -sachkouskaya.pdf ii a t h e n s i n s t i t u t e f o r e d u c a t i o n a n d r e s e a r c h a world association of academics and researchers valaoritou str., kolonaki, athens, greece. tel.: - . . fax: - . . email: info@atiner.gr url: www.atiner.gr (atiner) e s t a b l i s h e d i n (atiner) mission atiner is a world non-profit association of academics and researchers based in athens. atiner is an independent association with a mission to become a forum where academics and researchers from all over the world can meet in athens, exchange ideas on their research and discuss future developments in their disciplines, as well as engage with professionals from other fields. athens was chosen because of its long history of academic gatherings, which go back thousands of years to plato’s academy and aristotle’s lyceum. both these historic places are within walking distance from atiner‟s downtown offices. since antiquity, athens was an open city. in the words of pericles, athens“…is open to the world, we never expel a foreigner from learning or seeing”. (“pericles‟ funeral oration”, in thucydides, the history of the peloponnesian war). it is atiner‟s mission to revive the glory of ancient athens by inviting the world academic community to the city, to learn from each other in an environment of freedom and respect for other people‟s opinions and beliefs. after all, the free expression of one‟s opinion formed the basis for the development of democracy, and athens was its cradle. as it turned out, the golden age of athens was in fact, the golden age of the western civilization. education and (re)searching for the „truth‟ are the pillars of any free (democratic) society. this is the reason why education and research are the two core words in atiner‟s name. mailto:info@atiner.gr http://www.atiner.gr/ iii the athens journal of health issn number: - - doi: . /ajh volume , issue , december download the entire issue (pdf) front pages i-x understanding and addressing aggressive and related challenging behaviors in individuals with dementia dimitra loukissa imaging and stroke outcome – evidence from upper austria klaus buttinger & harald stummer interrelation of the population awareness of the presence of an increased risk of developing type diabetes mellitus anastasiya sachkouskaya, maria rusalenko, tamara sharshakova & irina savasteeva https://www.athensjournals.gr/health/ - hea.pdf https://www.athensjournals.gr/health/cover- - hea.pdf http://www.athensjournals.gr/health/ - - - -loukissa.pdf http://www.athensjournals.gr/health/ - - - -loukissa.pdf http://www.athensjournals.gr/health/ - - - -loukissa.pdf http://www.athensjournals.gr/health/ - - - -buttinger.pdf http://www.athensjournals.gr/health/ - - - -buttinger.pdf http://www.athensjournals.gr/health/ - - - -sachkouskaya.pdf http://www.athensjournals.gr/health/ - - - -sachkouskaya.pdf http://www.athensjournals.gr/health/ - - - -sachkouskaya.pdf iv athens journal of health editorial and reviewers’ board editors  dr. zoe boutsioli, vice president of publications & research, atiner & president, athens centre for greek & international education (acegie), zb @atiner.gr.  dr. john moraros, academic member, atiner & associate professor, university of saskatchewan, canada, john.moraros@usask.ca.  dr. douglas e. angus, full professor, telfer school of management, university of ottawa, canada, angus@telfer.uottawa.ca.  dr. apostolos tsiachristas, academic member, atiner & senior researcher, health economics research centre, nuffield dept. of population health, university of oxford, uk, apostolos.tsiachristas@dph.ox.ac.uk.  dr. paul contoyannis, head, health economics and management research unit, atiner & associate professor, faculty of social sciences, department of economics, mcmaster university, canada, contoyp@mcmaster.ca. editorial board  dr. steven m. oberhelman, associate dean and jr. professor of liberal arts, texas a&m university, usa, s-oberhelman@tamu.edu.  dr. sandra bassendowski, professor, college of nursing, university of saskatchewan, canada, sandra.bassendowski@usask.ca.  dr. sabine bohnet-joschko, walcker professor of management and innovation in healthcare, faculty of management and economics, witten-herdecke university, germany, sabine.bohnet-joschko@uni- wh.de.  dr. h r chitme, academic member, atiner & professor, oman medical college, sultanate of oman, hrchitme@rediffmail.com.  dr. mihajlo jakovljevic, academic member, atiner & professor, university of kragujevac, serbia, sidartagothama@gmail.com.  dr. elizabeth poster, professor, college of nursing and health innovation, university of texas arlington, usa, poster@exchange.uta.edu.  dr. paolo ricci, professor, university of bologna, italy, apricci@earthlink.net.  dr. iga rudawska, head and professor, chair of health economics, faculty of economics and management, university of szczecin, poland, igita@wneiz.pl.  dr. mary tsouroufli, academic member, atiner & reader in education, university of wolverhampton, uk, m.tsouroufli@wlv.ac.uk.  dr. yelena bird, academic member, atiner & associate professor, university of saskatchewan, canada, yelena.bird@usask.ca.  dr. donald rob haley, associate professor, health administration program department of public health, brooks college of health, university of north florida, usa, rhaley@unf.edu.  dr. jarmila kristová, associate professor, slovak medical university in bratislava, slovakia, jarmila.kristova@szu.sk.  dr. amardeep thind, academic member, atiner & professor and director, western university, canada, athind @uwo.ca.  dr. reza yousefi, associate professor of biochemistry, department of biology, shiraz university, iran, ryousefi@shirazu.ac.ir.  dr. yanzhong huang, senior fellow for global health, council on foreign relations, usa & professor and director for global health studies, school of diplomacy and international relations, seton hall university, usa, yhuang@cfr.org.  dr. david p. keys, associate professor, department of criminal justice, new mexico state, mailto:zb @atiner.gr mailto:john.moraros@usask.ca mailto:angus@telfer.uottawa.ca mailto:apostolos.tsiachristas@dph.ox.ac.uk http://www.atiner.gr/health-unit.htm mailto:contoyp@mcmaster.ca mailto:s-oberhelman@tamu.edu mailto:sandra.bassendowski@usask.ca mailto:sabine.bohnet-joschko@uni-wh.de mailto:sabine.bohnet-joschko@uni-wh.de mailto:hrchitme@rediffmail.com mailto:sidartagothama@gmail.com mailto:poster@exchange.uta.edu mailto:apricci@earthlink.net mailto:igita@wneiz.pl mailto:m.tsouroufli@wlv.ac.uk mailto:yelena.bird@usask.ca mailto:rhaley@unf.edu mailto:jarmila.kristova@szu.sk mailto:athind @uwo.ca mailto:ryousefi@shirazu.ac.ir mailto:yhuang@cfr.org v usa, davekeys@nmsu.edu.  dr. christiaan lako, academic member, atiner & associate professor, department of public administration, radboud university nijmegen, the netherlands, c.lako@fm.ru.nl.  dr. emmanouil mentzakis, academic member, atiner & associate professor, department of economics, university of southampton, uk, e.mentzakis@soton.ac.uk.  dr. laurence g. rahme, associate professor, department of surgery, microbiology and immunobiology, harvard medical school, boston, massachusetts & director of molecular surgical laboratory, burns unit, department of surgery, massachusetts general hospital, usa, rahme@molbio.mgh.harvard.edu.  dr. peter erwin spronk, internist-intensivist, fccp, director of research of intensive care medicine, medical director intensive care, gelre hospitals, apeldoorn, the netherlands, pspronk@chello.nl.  dr. roseane maria maia santos, academic member, atiner & associate professor, pharmaceutical sciences department, south university school of pharmacy, usa, rsantos@southuniversity.edu.  dr. fiona timmins, associate professor, school of nursing and midwifery, trinity college dublin, ireland, timminsf@tcd.ie.  dr. eleni l. tolma, associate professor, department of health promotion sciences, college of public health, university of oklahoma health sciences center, usa, eleni-tolma@ouhsc.edu.  dr. amalia tsiami, associate professor, london school of hospitality and tourism, university of west london, uk, amalia.tsiami@uwl.ac.uk.  dr. tibebe woldemariam, academic member, atiner & associate professor, college of pharmacy, california northstate university, usa, twoldemariam@cnsu.edu.  dr. alberto zamora, associate professor, school of medicine, university of girona & internal department, hospital of blanes, girona, spain, azamorac.zamora@gmail.com.  dr. alain touwaide, scientific director, institute for the preservation of medical traditions history of sciences & department of botany, national museum of natural history, smithsonian institution, usa, atouwaide@hotmail.com.  dr. anita meldrum, assistant head of department, sustainable environments & communities, school of engineering & the built environment, glasgow caledonian university, glasgow, scotland, anita.meldrum@gcu.ac.uk.  dr. jennie de gagne, assistant professor, school of nursing, duke university, usa, jennie.degagne@duke.edu.  dr. anna hnatyszyn-dzikowska, academic member, atiner & assistant professor, department of health economics, nicolaus copernicus university in torun, poland, a.hnatyszyn@cm.umk.pl.  dr. selini katsaiti, assistant professor, department of economics and finance, college of business and economics, united arab emirates university, uae, selini.katsaiti@uaeu.ac.ae.  dr. zia-ullah khokhar, assistant professor in chemistry, institute of biochemistry and biotechnology, punjab university, lahore & govt. islamia college, gujranwala, pakistan, zia _khokhar@hotmail.com.  dr. tammy lampley, assistant professor, assistant program director, nurse education program, sacred heart university, usa, lampleyt@sacredheart.edu.  dr. blazej lyszczarz, assistant professor, department of public health, nicolaus copernicus university, poland, blazej@cm.umk.pl.  dr. abeer orabi, assistant professor, women and newborn health nursing, college of nursing- jeddah, king saud bin abdulaziz university for health sciences, kingdom of saudi arabia, orabiab@ngha.med.sa.  dr. igor v. pantic, assistant professor, institute of medical physiology, school of medicine, university of belgrade, serbia, igorpantic@gmail.com.  dr. efrosini papaconstantinou, assistant professor, faculty of health sciences, university of ontario institute of technology, canada, efrosini.papaconstantinou@uoit.ca.  dr. tara n. turley-stoulig, instructor, department of biological sciences, southeastern louisiana university, usa, tturley@selu.edu.  dr. samah anwar mohamed shalaby, lecturer critical care and emergency, faculty of nursing, mailto:davekeys@nmsu.edu mailto:c.lako@fm.ru.nl mailto:e.mentzakis@soton.ac.uk mailto:rahme@molbio.mgh.harvard.edu mailto:pspronk@chello.nl mailto:rsantos@southuniversity.edu mailto:timminsf@tcd.ie mailto:eleni-tolma@ouhsc.edu mailto:amalia.tsiami@uwl.ac.uk mailto:twoldemariam@cnsu.edu mailto:azamorac.zamora@gmail.com mailto:atouwaide@hotmail.com mailto:anita.meldrum@gcu.ac.uk mailto:jennie.degagne@duke.edu mailto:a.hnatyszyn@cm.umk.pl mailto:selini.katsaiti@uaeu.ac.ae mailto:zia _khokhar@hotmail.com mailto:lampleyt@sacredheart.edu mailto:blazej@cm.umk.pl mailto:orabiab@ngha.med.sa mailto:igorpantic@gmail.com mailto:efrosini.papaconstantinou@uoit.ca mailto:tturley@selu.edu vi alexandria university, egypt, samahanwar_ @yahoo.com.  dr. abraham brown, senior lecturer, division of marketing, nottingham business school, nottingham trent university, uk, abraham.brown@ntu.ac.uk.  dr. graeme lockwood, senior lecturer in law and management, department of management, king‟s college london, uk, graeme.lockwood@kcl.ac.uk.  dr. nditsheni jeanette ramakuela, academic member, atiner & senior lecturer, university of venda, south africa, nditsheni.ramakuela@univen.ac.za.  dr. melina dritsaki, academic member, atiner & senior health economist, oxford clinical trials unit, nuffield department of orthopaedics, rheumatology and musculoskeletal sciences , university of oxford, uk, melina.dritsaki@ndorms.ox.ac.uk.  dr. camelia diaconu, lecturer, university of medicine and pharmacy (umf) carol davila, faculty of general medicine, internal medicine clinic & internal medicine physician, floreasca clinical emergency hospital of bucharest, romania, camiluciemi@yahoo.com.  dr. janet dzator, academic member, atiner & senior lecturer, the university of newcastle, nsw, australia, janet.dzator@newcastle.edu.au.  dr. efi mantzourani, academic member, atiner & lecturer in pharmacy practice, leader of undergraduate placement-based learning, school of pharmacy and pharmaceutical sciences, cardiff university, uk, mantzouranie @cardiff.ac.uk.  dr. helena martins, lecturer, polytechnic of porto & university of port, portugal, helenagmartins@gmail.com.  dr. catherine wright, academic member, atiner & lecturer and principal investigator, glasgow calcedonian university, uk, catherine.wright@gcu.ac.uk.  mr. themba t. sigudu, lecturer of environmental health, faculty of health sciences, university of johannesburg, south africa, thembas@uj.ac.za.  dr. junhong zhu, academic member, atiner & postdoctoral associate, arthur labatt family school of nursing, western university, canada, junhongzhu @hotmail.com.  dr. noha el-baz, emergency and critical care nursing department, faculty of nursing, alexandria university, egypt, noha.elbaz@gmail.com.  dr. audrey marie callum, learning and development manager, sweettree home care services, london, uk, apeart.callum@gmail.com.  dr. christos andreou, academic member, atiner & special educational officer, nursing department, faculty of health sciences, cyprus university of technology, cyprus, christos.andreou@cut.ac.cy.  dr. peter vermeir, academic member, atiner & head atp/researcher, ghent university hospital/ghent university, belgium, peter.vermeir@uzgent.be.  dr. kisalaya basu, academic member, atiner & senior economic advisor, applied research and analysis directorate, 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https://www.atiner.gr/social-program x athens journal of health - volume , issue – pages - https://doi.org/ . /ajh. - - doi= . /ajh. - - understanding and addressing aggressive and related challenging behaviors in individuals with dementia by dimitra loukissa  dementia in the older adult population is a multifactorial, complex condition currently affecting an estimated . million individuals worldwide. the literature has been consistent highlighting the financial, emotional, and social burden of the illness on the affected individual, the family, and health care resources. although in more recent decades there have been significant advances in the area of genetics, neuroscience, testing, and psychopharmacology, the management of this complex condition continues to present major challenges. common illness related challenging behaviors may range from wandering, restlessness, irritability, personality changes, hoarding, sexual inhibition to escalating anxiety, verbal and physical agitation and aggression. current pharmacological and non-pharmacological interventions aim at addressing behavioral and psychological symptoms to alleviate patient anxiety, promote cognitive stimulation, address safety issues, decrease caregiver burden, and empower healthcare personnel to better care for these patients in the hospital and nursing home settings. this article reviews published literature covering a -year period up to spring utilizing the pubmed, cinahl, medline, cochrane and proquest databases. from the initial identified articles, twenty one studies examining non- pharmacological interventions were deemed appropriate to be reviewed. key words included dementia, disruptive behaviors, and nursing interventions. criteria for studies reviewed included: peer-reviewed articles published in the last years, written in english, with the focus on intervention implementation. findings from those studies offer insights into a variety of approaches that can address challenging behaviors in dementia. advancements in the areas of behavioral, psychological, milieu interventions and also most commonly utilized pharmacological agents are discussed, as well as the importance of nursing staff involvement in identifying escalating behaviors and successfully intervening to promote safety, and decrease anxiety and agitation. finally, implications for practice are explored. keywords: dementia, disruptive behaviors, nursing interventions, older adults. introduction dementia, with alzheimer’s disease being the most prevalent form of the illness, is the th leading cause of death in the usa and affects an estimated . million americans, the vast majority of them over the age of . it is estimated that by this number will escalate to . million cases (fargo and bleiler ). global estimates report that currently there are . million individuals worldwide with a diagnosis of dementia. it is expected that cases will double by to approx. . million and by the affected individuals will account for . million worldwide. in the usa alone the cost of care such as medical services, caregiving services, hospitalizations, adult day services, long-term care, and hospice care services, is estimated at $ billion. current worldwide estimates raise the cost to $ billion (fargo and bleiler ). this illness which results in progressive decline in function and cognition, extends over a period of several years, and causes significant distress to the affected individual, their family, hospital personnel and the society at large. over  professor, north park university, usa. https://doi.org/ . /ajh. - - vol. , no. loukissa: understanding and addressing aggressive and related... the course of the illness on average %- % of the affected patients experience at least one aggressive symptom whether they live in the community or in a nursing home (cankurtaran , ballard and corbett ). although there is no definitive treatment for dementia, great progress has been made over the past couple of decades in understanding the complexity of the brain and illness symptomatology as well as implementing non-pharmacological and pharmacolo- gical interventions to control the aggressive behaviors. this work reviews current literature on individual and milieu behavioral interventions to manage disruptive behaviors including basic pharmacological approaches that can be considered as adjunct interventions to relieve persistent aggressive behaviors. clinical implications and recommendations for nursing practice are also discussed. disruptive behavior identification in dementia throughout the course of the illness behaviors represent changes of the disease process at the molecular, cellular, and neurochemical levels. according to the literature, behavioral disturbances have been classified as primary and secondary exhibiting various degrees of intensity, at times involving psychiatric symptomatology (desai and grossberg , kales et al. a). these behaviors can occur at home, the community, nursing home settings, but also during hospitalization (table ). table . common disruptive behaviors in dementia primary behaviors secondary behaviors result of psychiatric symptomatology cognitive challenges forgetfulness, concentration problems, sundowning, impulsivity, inability to care for self, poor judgment affective challenges apathy, low motivation, lack of interest, irritability, agitation (yelling, wandering, hoarding, screaming, cursing, disinhibition), aggression (grabbing, biting, pushing) medication side effects pain delirium related to infection or other medical issue misinterpretation of the environment misidentification insomnia paranoia delusions hallucinations psychosis anxiety depression primary disruptive behaviors include behaviors that range from escalating anxiety, sundowning, pacing, wandering, to refusal to redirection, verbal threate- ning, yelling, screaming, and hoarding. other disruptive behaviors may include sexual inhibition, physical threats or harm to others by kicking, grabbing, biting, pushing through or physically attacking someone (duane et al. ). secondary disruptive behaviors usually are the result of medical conditions, medication side effects, pain, misidentification and misinterpretation of the athens journal of health december environment and at times delirium related to infection or other acute medical conditions. psychiatric type symptomatology may include paranoia, delusions, halluci- nations, depression, anxiety, and psychosis. researchers have stressed the importance of the use of measurement tools to objectively determine the severity of the behavior which may result from depressive symptomatology, wandering, psychotic presentation, or aggression as such behaviors are the most challenging to address (derlinde et al. ). a total of measurements designed to measure challenging behaviors in dementia were examined by van derlinde et al. ( ). the researchers commented that only few of those instruments assessed reliability and validity. although reliability and validity were satisfactory when reported, it is strongly suggested that when considering the use of an assessment tool, variables such as study sample, target population, living situation, time frame, and setting are included as they can affect the outcomes. impact of dementia disruptive behaviors common challenging behaviors in dementia create safety issues for the affected individual and those around them. symptomatology can vary in presentation and intensity over the course of the illness. zwijsen et al. ( ) argue that over % of demented nursing home residents express at least one form of disruptive behaviors. those behaviors may range from repetition, wandering, mood related outbursts, swearing, hoarding, refusing to attend to hygiene, eating problems, disrobing, inappropriate sexual behaviors, to paranoia, hallucinations, delusional thinking, irritability, anger, verbal and physical aggression. backhouse et al. ( ) found aggression to be the most challenging behavior in nursing home residents, as reported by % of care home managers. apart from safety and quality of life issues for the affected individual and increase in caregiver stress, as well as threats to caregiver income and health, unaddressed disruptive behaviors usually accelerate the progression of the illness (van den wijngaart et al. , rabins and lyketsos ). case study mr. jones, a -year-old caucasian retired male, with a recent diagnosis of dementia, was a successful administrator of a large company and avid reader. during his career, mr. jones had travelled all over the world, maintained a healthy life style and participated in volunteer work in his community. several months ago his spouse became concerned as mr. jones was becoming increasingly resistant to redirection, and on a couple of occasions he became aggressive with her, pushing her away from the door so he could exit the house and “go to work”. as mr. jones was becoming increasingly difficult to control the decision was made to have him hospitalized to have his impulsivity and aggressive behaviors addressed. during his hospitalization on a general psychiatric unit, mr. jones required a couple of vol. , no. loukissa: understanding and addressing aggressive and related... times restraints as he was physically aggressive with staff for not allowing him to exit the unit. new medication prescriptions addressed the issue of aggression for the most part, however, mrs. jones was concerned that her husband “wasn’t the person she knew anymore” as he appeared sedated and disinterested most of the time. mr. jones was transferred to an inpatient dementia unit for rehabilitation and further treatment and stabilization, where he was able to benefit from a patient- centered approach, a milieu that was designed to address the needs of individuals with similar presentation and a daily structure and routine. interventions a typical regimen to address disruptive behaviors includes a combination of antipsychotic agents to control dangerous and aggressive behaviors in combination with non-pharmacological interventions and environmental modifications in the inpatient setting. although there is a general agreement amongst health care providers that disruptive behaviors must be addressed successfully, behavioral interventions tend to be much more preferred over the use of antipsychotic agents which have been widely criticized. in more recent years, regulatory requirements have achieved a % reduction of antipsychotic medication in nursing homes over a three year old period, as more focus is placed on the use of non-pharmacological interventions and person- centered care (benbow , blackburn and bradshaw ). the american geriatric society places emphasis on the worldwide initiative for emphasis on the use of non-pharmacological approaches as the first line of interventions to address challenging behaviors (anand et al. ). according to the health and social care information center in great britain there has been a % reduction in the use of antipsychotics in british nursing homes over the course of the past decade (prince et al. ). yet, due to the conservative response to non-pharmacological approaches, antipsychotic medications often may dictate the course of action in maintaining safety. although preference is given to behavioral interventions, it is not uncommon that child et al. ( ) found that % of nursing home residents were receiving antipsychotic medications. due to the lack of a single treatment modality that successfully addresses disruptive behaviors, the availability of non-pharmacological and pharmacological interventions, although with various degrees of effectiveness, has allowed caregivers to manage some of those behaviors in the community, thus, delaying institutionalization, and allowing the affected individual to stay in their familiar environment, which in return limits costs, maintains quality of life and prevents caregiver burden. backhouse et al. ( ) found that concurrent use of non- pharmacological interventions along with the use of antipsychotic medications was effective in addressing disruptive behaviors in care homes. the case study presented above is a clinical testimonial that the use of both pharmacological and non-pharmacological interventions is far more superior in outcome effectiveness than just one approach. other treatment modalities with various degrees of effectiveness may include electroconvulsive therapy or even the use of restraints athens journal of health december in emergency situations as presented in table , in cases where safety is significantly compromised. non-pharmacological interventions current practice guidelines place a great emphasis on the use of non- pharmacological approaches as an initial intervention before resorting to chemical agents as they offer viable and in a number of cases successful alternatives. although intervention effectiveness in many cases might be modest, there has been ongoing discussion in the literature on interventions that support social interactions for patients affected by dementia, person-centered care approaches as well as the benefit of alternative interventions such as aromatherapy, physical activity, and pet therapy to name a few (kramer et al. , nordgren and engstrom , tournier et al. , forrester et al. , soares-weiser ). table summarizes related studies. the benefit of short, structured but systematically applied tactile activities tailored to specific needs of the individual using a “tool box” was discussed by cohen-mansfield et al. ( a). along the same lines preliminary evidence from small studies assessing aromatherapy shows that the use of lavender oil and melissa officinalis oil (lemon oil) in particular were successful in decreasing agitation while offering the added benefit of a safe alternative (ballard and corbett ). to address mild to moderate depressive symptomatology ballard and corbett ( ) discuss the benefit of simple activities such as individual or group exercise (figures and ), singing, and reminiscing. the benefit of doll therapy as a means of providing comfort, identity, attachment, and sensory stimulation has been widely criticized. yet, small studies have reported benefits in the areas of comfort, wellbeing, engagement, decrease in agitation, and in some instances increase in dietary intake, as well as creating a sense of active participation in the environment, rather than passively receiving care (benbow , mitchell ). figure . exercise therapy http://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact= &ved= ahukewj__i hvl nahuidj khvjvc qjrwibw&url=http://www.infinitymusictherapy.com/#!services-for-older-adults/cf j&psig=afqjcned qshb_weawugwpulzkyc- lqa&ust= vol. , no. loukissa: understanding and addressing aggressive and related... figure . group exercise therapy blackburn and bradshaw ( ) examined randomized controlled trials that assessed the benefit of music therapy on patients with dementia as determined by the mini-mental state exam (figure ). these individuals lived in residential care settings in great britain. although it is suggested that music therapy may improve cognitive function and decrease anxiety, depression and agitation in older adults with dementia, the true effectiveness of music therapy remains unclear due to methodological issues of existing studies and lack of reports on which specific aspects of the intervention contribute to its effectiveness. however, music therapy is still recommended as a safe, no cost supplemental intervention to address anxiety and agitation in dementia. figure . music therapy http://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact= &ved= ahukewinge_ vl nahuimz khdglaykqjrwibw&url=http://khn.org/news/ucla-freshmen-learn-about-growing-old/&psig=afqjcnfianjbakqrhthw- tq n w irtjg&ust= https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact= &ved= ahukewjh lt u nahufwj khzmgabwqjrwibw&url=https://www.visitingnurse.org/ / /music-therapy-benefits-older-adults-with-alzheimers-and-dementia/&psig=afqjcneo_lpn cqm nrqwb wtflwyo vnw&ust= athens journal of health december similarly, nair et al. ( ) studied the effectiveness of baroque music on aggressive behaviors of residents in two nursing home units in australia who scored on the mini-mental state examination / or below. the researchers chose baroque music based on music characteristics that mimic the human heart beat and prior reports that baroque music enhances alpha brain waves in the brain, thus hypothesizing that this kind of music will have calming effects on agitated behaviors. results showed that baroque music increased agitation while the music was playing but the effect did not carry over afterwards. they concluded that although volume, individual resident music preferences and speed of music might have been factors that contributed to the results, their findings support existing documentation that music influences behavior significantly. table . interventions to address challenging behaviors in dementia nopharmacological milieu management pharmacological other modalities communication approaches: reminiscing, sing- along, music, reality orientation, short sentences, simple directions, maintain routine and consistency, reality orientation affective approaches: positive attitude calm demeanor smile tactile approaches: use of toolbox pet therapy doll therapy tactile stimulation multi-sensory stimulation sensory approaches: aromatherapy massage touch music therapy physical needs approaches: bathroom schedule nourishment hydration sleep hygiene pain assessment and intervention room temperature regulation suitable clothing environmental safety environmental modification opportunities for physical activity possibilities for wandering stimulation and noise reduction opportunities for socialization neighborhoods memory aids memory corners work stations acetylcholinesterase inhibitors (antidementia drugs) antidepressants antipsychotics mood stabilizers bright light therapy electroconvulsive therapy (ect) use of physical restraints transcranial magnetic stimulation (tms) vol. , no. loukissa: understanding and addressing aggressive and related... there is limited research examining the effectiveness of animal-assisted therapy in patients suffering from dementia (figure ). the effectiveness of a dog-assisted intervention to address challenging behaviors in eight swedish nursing homes involving residents was studied by nordgren and engstrom ( ). participants received a total of sessions of dog exposure lasting up to an hour once to twice a week as opposed to a control group. it was found that there was no statistically significant improvement post intervention, however, the researchers commented on promising immediate trends showing decrease in non- aggressive behaviors. it was concluded that dog-assisted interventions may be beneficial as a complementary approach to medication to decrease behavioral symptomatology and promote social interaction. kramer et al. ( ) introduced aibo, a robotic dog to nursing home residents with dementia and compared resident initiated interaction, smiles, laughs, and hand gesticulations to another group spending time with a person and a third group spending time with a live dog. it was concluded that although residents in all three groups were more socially interactive than before receiving the intervention, there were no statistically significant differences between the three groups in the areas of verbal and non-verbal behaviors including touch, smiles, hand gestures, and conversations, thus supporting the benefit of social interaction resulting from individualized ongoing stimulation. figure . animal assisted therapy http://www.animalhealthfoundation.net/how-we-help/pet-facilitated-therapy.html athens journal of health december table . non-pharmacological intervention studies to address dementia challenging behaviors author(s) country/ setting method sample (n) measures intervention findings kramer et al. ( ) usa, nursing home behavioral observational approach female residents number of behaviors per intervention (eye contact, laughs, smiles, hand gestures, conversations, touch) visit by robotic “pet” aibo, visit by a person, visit by a person and a live dog all three types of visits stimulated social interaction with aibo eliciting more and longer interactions nordgren and engstrom ( ) sweden, nursing homes quasi-experimental, pre/post-test design residents cmai and mddas standardized caregiver rating questionnaires ten sessions of dog assisted intervention - , once or twice a week aggressive behaviors decreased immediately post intervention in the treatment group but not overtime backhouse et al. ( ) england, nursing homes postal survey to care managers care managers survey developed by authors observed challenging behaviors and approaches to address them reminiscence and music therapy were the most utilized non- pharmacological approaches nair et al. ( ) australia nursing home observational pilot residents behavioral chart assessed effect of baroque music on challenging behaviors baroque music seemed to have escalated challenging behaviors bauer et al. ( ) australia nursing home descriptive observational method residents wilcoxon signed- rank test observed resident responses from intervention (snoezelen) and control group (best practice) no significant differences between snoezelen and “best practice” interventions bremault-phillips et al. ( ) canada, practitioner experiences qualitative study participants focus groups, surveys explored issues related to disruptive behaviors, develop plan to address those there is a need and readiness to develop strategies to address disruptive behaviors cohen-mansfield et al. ( a) usa, mds, phds, nps web-based survey mds, phds, nps close-ended questionnaire assessed health care provider knowledge and attitude on how to address challenging behaviors non- pharmacologically phds and nps had greater knowledge on how to address behaviors nonpharmacologically than mds. phds, nps, and mds, attitudes supported the use of non- pharmacological approaches, with nps scoring the highest vol. , no. loukissa: understanding and addressing aggressive and related... cohen-mansfield et al. ( b) usa, mds, phds, nps web-based survey mds, phds, nps close ended questionnaire gathered information on assessment and treatment of behavioral problems in nursing home residents phds used more frequently assessment instruments, mds and phds utilized similar behavioral and pharmacological interventions cooke et al. ( ) australia, nursing home residents randomized cross- over design with control groups nursing home residents with mild to moderate dementia short form cohen- mansfield inventory, rating anxiety in dementia scale live, familiar song-singing with musicians versus reading activity music did not improve anxiety and agitation deudon et al. ( ) france, nursing home residents randomized intervention with a control group residents cohen-mansfield agitation inventory, observational scale assessed aggressive behaviors post staff training on handling challenging behaviors intervention group experienced decrease in aggressive behaviors post intervention with a carry- over effect months later drapeau et al. ( ) canada, outpatients with dementia case control study patients with dementia and healthy older adults standardized neuro psychological testing emotional reactions were recorded given novel film clips dementia individuals expressed impaired recognition from the face but auditory emotions were present fossey et al. ( ) great britain, nursing home residents cluster randomized trial residents cohen-mansfield agitation inventory trained staff over months to utilize non pharmaco logical interventions to address agitation staff training reduced the use of medications to address agitation. results were sustained for months sung et al. ( ) taiwan, nursing home residents quasi –experimental pre-posttest design residents rating anxiety in dementia staff provided care with preferred music to the control group versus care without music the intervention group experienced significantly lower anxiety levels khan and curtice ( ) great britain, nursing home residents qualitative study nursing home residents questionnaire to elicit themes trained care home staff to restrict pharmacological interventions for agitation a total of patients were stable and discharged post intervention nicholls et al. ( ) australia, family members of nursing home demented individuals three-phase mixed method design family caregivers semi-structured focus group interviews pre, post evaluation of “high touch” intervention based on the end-of-life namaste care program residents and families felt more relaxed and comfortable in their interactions with each other athens journal of health december oppikofer and geschwindner ( ) switzerland, nursing home residents pre- post design residents cohen-mansfield agitation inventory, pittsburgh agitation scale implementation of nursing interventions to decrease agitation five nursing interventions (noise reduction, adls, fluids, communication, walking) greatly decreased agitated behaviors palm et al. ( ) germany, nursing home residents multi method pre, post-test residents demcare-q questionnaire instrument development to assess non-pharmacological interventions content validity established, proposed additional testing to test further instrument reliability spagnolo et al. ( ) italy, outpatient individuals with dementia retrospective observational study patients cumulative illness rating scale, mini mental status examination, r mental stimulation intervention there was a decrease in challenging behaviors, along with caregiver distress toba et al. ( ) japan, newly admitted nursing home residents non randomized study design residents in the intervention group and in the control group mini mental status examination, observational assessments, dementia disturbance scale intensive rehabilitation individual activity interventions improvement in cognitive function and behaviors van mierlo et al. ( ) netherlands, newly admitted nursing home residents qualitative explorative design with semi-structured interviews interviews mini mental status examination, neuro psychiatric inventory family and staff education education on how to deal with difficult behaviors of individuals transitioning from the community to the nursing home family support intervention increased awareness for both staff and families of challenging behaviors tournier et al. ( ) france, nursing home residents pre-, post- intervention residents mini mental status examination, systematic assessment of observed behaviors trainer-dog pair sessions modest effect on resident behavioral scores, but significant improvement in caregiver stress scores vol. , no. loukissa: understanding and addressing aggressive and related... pharmacological interventions pharmacological agents are considered the last choice of treatment to address unsafe, challenging behaviors in dementia, that include pacing, restlessness, irritability, extreme anxiety, agitation and aggression. although approximately - % of individuals who experience the above behaviors are nursing home residents, it has been reported that an additional % experience those behaviors in the community (zeller et al. ). the safety and efficacy of available medications is considered controversial and clinicians are urged to exercise caution given the severity of possible adverse reactions of most medications. moreover, dose variations, diversity in assessment scales and limited data reporting from failed trials in addition to population heterogeneity when it comes to drug responses create further issues and limit our knowledge when it comes to medication management of behaviors and symptomatology (anand et al. ). acetylcholinesterase inhibitors and antidepressants although the benefit of acetylcholinesterase inhibitors has been consistently discussed in the literature of the past two decades, the efficacy of medications such as memantine and donepezil to address aggression agitation, and irritability has not been consistent. furthermore, methodological limitations, small sample sizes, lack of assessment tools, and variance in the use of control groups complicate the picture even further (cankurtaran ). conservative benefits of antidepressants, with ssris being the most preferable option, have been associated with improvement in agitation, and are better tolerated than typical and atypical antipsychotics. research studies still need to explore safety issues associated with long-term use (cankurtaran , ballard and corbett ). antipsychotics the use of typical and atypical antipsychotic medications has been discussed primarily over the past two decades in managing aggressive behaviors. small placebo-controlled trials have focused on the effectiveness of controlling agitation and aggression, yet the use of antipsychotics and concerns over the possibility of cerebrovascular complications, prolonged qt intervals, dysthonias, parkinsonian presentation and concerns about increase in mortality rates have limited intervention periods and make the use of antipsychotics controversial amongst prescribers (ballard and corbett ). in a prospective clinical trial mintzer et al. ( ) found risperidone to be significantly effective in addressing psychotic presentation, whereas the efficacy of olanzapine was not supported by all reviewed studies (schneider et al. , mintzer et al. , sultzer et al. ). additionally, quetiapine did not address agitation adequately (ballard et al. ), yet, aripiprazole provided significant amelioration in aggression in another clinical trial (streim et al. ). athens journal of health december mood stabilizers and antiepileptics preliminary results from small studies offer conservative benefits for the use of antiepileptic agents to decrease behavioral disturbances, with some agents showing little to no effect in addressing those behaviors (hungerford et al. ). a small number of studies have modestly supported carbamazepine, gabapentin, topiramate and lamotrigine in managing agitation and aggression in some patients, whereas valproate and lithium provided very limited or no effectiveness in managing behaviors (yeh and ouyang , amann et al. , ng et al. , desai and grossberg ). small sample sizes, inconsistencies in the use of measurement scales, use of subjective measurements, low reliability of outcomes, medication adverse reactions and drug to drug interactions in the elderly populations necessitate for close attention and conservative approaches when it comes to the use of these medications to manage aggressive behaviors. other treatment modalities electroconvulsive therapy (ect) although ect has been widely utilized with great effectiveness in the treatment of mood depressive disorders in the general population, little has been reported on the effectiveness of this treatment modality to control agitation and aggression in dementia. yet, ect is considered to be an attractive option, especially when antipsychotics produce limited results in the area of symptom management, or are associated with serious side effects. despite its safety and reported effectiveness ect is considered an off-label, last resort approach in absence of treatment effectiveness of other interventions (ujkaj ). research findings have been consistently promising over the past decades. for instance, bang et al. ( ), wu et al. ( ), kerner and prudic ( ), holmberg et al. ( ) reported improvement in depression, and agitation in patients suffering from dementia. consistent with those findings in a more recent study, encouraging results from the use of ect were reported by acharya et al. ( ) who followed a group of individuals receiving ect as the primary intervention to address agitation and aggression. it was found that a total of % of the participants tolerated the procedure well and experienced statistically significant reduction in aggression and agitation from baseline. the remaining participants had to discontinue the study primarily because of issues unrelated to ect such as development of infection ( %), new cardiac diagnosis ( %), death ( %). only two participants ( %) did not benefit from treatment. similarly to other ect studies, this study was also limited due to the small sample size, the heterogeneity of dementia diagnoses and the lack of a control group. vol. , no. loukissa: understanding and addressing aggressive and related... transcranial magnetic stimulation (tms) the effectiveness of tms has been studied in depression with promising effectiveness. existing studies in dementia have found that tms may improve cognitive function and verbal communication (wu et al. , george et al. , hoogendam et al. , cotelli et al. , cotelli et al. ). in a randomized trial by wu et al. ( ) the effectiveness of high frequency transcranial magnetic stimulation (rtms) in conjunction with standard antipsychotic medications was assessed in a group of participants with a mini-mental state examination (mmse) of less than and compared to a control group receiving only antipsychotic medication over a period of weeks. it was found that the intervention group experienced statistically significant improvement in the areas of anxiety, phobias, sleep, cognitive function, mood instability, restlessness, aggression and agitation. although the results on the effectiveness of rtms and antipsychotic medication were promising, the researchers acknowledged limitations related to the small sample size, and lack of data discussing long-term effectiveness, as well as lack of direction for the use of booster sessions. bright light therapy (blt) the use of blt has been studied with a number of conditions. the effectiveness of this intervention is rather inconclusive when addressing agitation in older adults with dementia (hanford and figueiro, ). the effects of daily administration of blt for one hour over a period of weeks were studied in a randomized trial by dowling et al. ( ). one group received the intervention in the morning, another one in the afternoon and the control group received regular indoor light. the researchers reported statistically significant differences between the three groups in the areas of aggression and agitation, thus supporting the effectiveness of blt. in another randomized controlled trial participants in the intervention group were exposed to , lux intensity light, whereas controls were exposed to standard lux fluorescent light, for a period of two weeks, for two hours a day. it was found that participants in the intervention group experienced improved sleep and decreased agitation, however, the findings were not statistically significant (dowling et al. ). nursing implications the literature overwhelmingly supports a combination of treatment approaches that individuals suffering from the illness can benefit from. nurses have an ongoing involvement in the care of these individuals not only in long term care facilities and the community, but also in the hospital setting. providing person- center care interventions greatly increases the chances to successfully address challenging behaviors that have the potential to escalate to aggressive presentation (stein-parbury et al. ). the enhancement of cognitive function through activities such as socialization, reminiscence, support of activities of daily living, athens journal of health december are just a few basic examples that promote environmental structure, reorientation and a sense of security, which in return may contribute to the decrease of challenging behaviors (cohen-mansfield et al. b). although major advances in the area of neuropsychiatry have enabled health care providers to understand the biological basis of challenging behaviors and aggression associated with alzheimer’s disease and related dementias, there is still much to be discovered. yet, nurses are in a unique position to know their patients’ personality characteristics and abilities, thus being able to implement communi- cation strategies, activities, and other related approaches to promote a culture of safety and self-worth, where everyone feels protected. by modifying the milieu, eliminating loud, frightening noises, clutter, or overstimulation, but also making clinical judgement calls when the assistance of medication may be helpful, the intensity of a challenging behavior can be significantly decreased (keltner et al. ). this in return can promote quality of life for the affected individual overtime, but also decrease health care provider and family caregiver burnout with the ultimum goal of delaying and in some cases even preventing nursing home placement. conclusions and future recommendations our understanding of the biological basis of disturbing behaviors in dementia with the most difficult ones of agitation and aggression is limited and the pathophysiology of the illness is continually changing. the exact process of the disease process is still unclear. new findings often times replace previous knowledge about the process. for instance, neuron damage now is believed to be a rather continuous and ongoing process caused from tangles (anand et al. ). a complex casqued of mechanisms affecting mitochondrial dysfunction, and contributing to chronic oxidative stress, inflammation, hormonal imbalances, neurofibrillary tangle accumulation, in addition to genetic abnormalities, seem to have a significant contribution in the disease process (hungerford et al. ). currently, the focus of pharmacological and non-pharmacological treatments is on addressing specific symptomatology. the evidence of successful pharmacological management of disruptive behaviors in dementia is inconclusive and study outcomes are limited by a variety of uncontrolled variables and sampling issues. cholinesterase inhibitors, antide- pressants, typical and atypical antipsychotics, benzodiazepines, mood stabilizers and other pharmacological interventions have shown various degrees of effectiveness. upcoming research presents some innovative approaches, which although at the infancy stage, appear to be promising. amongst those, immune- therapy, anti-inflammatory therapy, antioxidant supplementation, dna vaccination are attractive options to consider. in addition, great emphasis is placed on understanding the disease process correctly, as well as the drug’s bioavailability and pharmacokinetics (anand et al. ). yet, health care providers have been more successful when including psychosocial and behavioral interventions than medication alone. in hospital and vol. , no. loukissa: understanding and addressing aggressive and related... nursing home settings, nursing staff can utilize a variety of behavioral interventions to redirect inappropriate or challenging behaviors, provide structure and purpose and promote self-esteem. individual and group activities that provide mental stimulation draw from familiar past roles and support self-worth can diminish disruptive behaviors even for a brief period of time. activities such as music therapy, sing along, reminiscing, aromatherapy, movie night, grooming group, pet therapy, exercise, are just a few options that are popular treatment interventions and are considered safe and well tolerated. future research can explore the effectiveness of specific behavioral interventions and medications that are successful in addressing specific disruptive behaviors taking into consideration individuals’ cultural background. in addition, involving family members in such activities, may allow for continuation of successful interventions at home for community dwelling patients with the ultimate benefits of improved quality of life and perhaps delay in nursing home placement. moreover, new problem solving health care provided approaches such as the “dice” approach (describe, investigate, create, evaluate) can assist in implementing a plan of care that focuses on individual patient needs, thus allowing for more successful management of behaviors (kales et al. b). finally, research studies on caregiver direct involvement in activities for the affected person can provide new insights into the areas of caregiver physiological and psychological health. references acharya d, harper hg, achtyes ed et al. 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lemesle et al., ; wieberdink, ikram, hofman, koudstaal, & breteler, ) stroke is one of the most economically important diseases all over the world (buttinger & stummer, ). the diagnosis "stroke" presents with an acute onset of a central nervous deficit on the basis of a vascular pathology, starts suddenly and lasts longer than hours. fugacious, often self-limiting neurological disorders with a significantly shorter duration are called tia (transient ischemic attack). in recent years, the concept of "acute ischemic cerebrovascular syndrome" (aics) is found in the literature (kidwell & warach, ). in this concept the duration of the clinical symptoms is not included in the definition. the two main subtypes of acute stroke (about % cerebral bleeding; about % brain infarction) (warlow, sudlow, dennis, wardlaw, & sandercock, ) need different strategies of therapy.  vice medical director, salzkammergut-klinikum, austria & umit – institute for health management and economics, austria. † full professor, umit – institute for health management and economics, austria & university seeburg castle, austria. https://doi.org/ . /ajh. - - vol. , no. buttinger et al.: imaging and stroke outcome ... dependent from size (mass effect?), location (compression?), age and comorbidity of the patient either conventional therapeutic strategies (slowly resorption of blood) or surgical procedures (evacuation of intracranial blood) are indicated in case of acute stroke due to intracranial hemorrhage (bösel, zweckberger, & hacke, ; datar & rabinstein, ; kirkman, citerio, & smith, ). different to other sites in the human body the vascular supply of the central nervous system has only few collaterals. in case of a brain infarction at least one (cervical or intracranial) vessel is occluded due to various reasons. this means that in case of a vascular occlusion the affected brain territory gets insufficient blood and oxygen and therefore loses cerebral function and vitality. because there is only a short time window for survival of brain cells, it is necessary that the blood flow is restored as soon as possible ("time is brain") in order to minimize deaths and improve functional outcomes (gomez, ). many trials demonstrated that in case of brain infarction intravenous thrombolytic therapy with recombinant tissue plasminogen activator (rtpa) given up to . hours after symptom onset is an effective treatment which saves lives and improves functional outcome (adams et al., ; hacke et al., ; hajjar, kerr, & lees, ; lees et al., ; nolte & endres, ; schellinger et al., ; shobha, buchan, hill, & canadian alteplase for stroke effectiveness, ). on the other hand outcome data has shown that in less than % of patients with a clot in a proximal intracerebral artery (middle cerebri artery or basilar artery) or in the internal carotid artery intravenous thrombolysis (rtpa) leads to an early recanalization (fransen et al., ). therefore in the last years another treatment option for ischemic stroke was proven. since november five positive randomized controlled trials (mr clean, revascat, escape, swift prime, extend ia) impressively showed that the treatment of a severe stroke due to a proximal vessel occlusion is safe and highly effective when the blood clot is removed early by mechanical intraarterial thrombectomy (campbell et al., ; evans, white, cowley, & werring, ; fransen et al., ; molina et al., ; palaniswami & yan, ; saver et al., ; weiner & ducruet, ). early intraarterial mechanical thrombectomy (within hours after onset of stroke symptoms) significantly improves outcome in case of severe ischemic stroke (evans et al., ) and therefore this therapeutic procedure has found its way into certain guidelines (ringleb & veltkamp, ; schlaganfall-gesellschaft, ). a few subgroups of stroke (e.g. wake-up strokes) are not fully covered from these data. in order to select patient groups which will mostly benefit from a mechanical intraarterial thrombectomy a strong need for a multimodal neuroradiologic imaging was shown (menon, campbell, levi, & goyal, ; palaniswami & yan, ). the defuse trial used (ct or mr) perfusion imaging in order to select patients with a severe stroke ( to hours after a patient was last seen well) eligible for endovascular treatment (albers et al., ). similar, the dawn trial used ct (perfusion) or mr (diffusion) imaging (difference between infarct athens journal of health december volume and clinical deficit) in order to select patients suitable for thrombectomy to hours after stroke (nogueira et al., ). despite of noticeably later beginning of endovascular treatment both trials demonstrated better outcomes for patients treated with endovascular therapy plus standard therapy than standard medical therapy alone. the findings of the defuse trial (albers et al., ; powers et al., ) led to a major revision of the guidelines for the early management of patients with acute ischemic stroke in the us (powers et al., ). clinical neurological examinations are used to assess the severity of an acute stroke. for this purpose some scoring systems (clinicometric scales and functional impairment scales) have been developed. the barthel index (bi) and the modified rankin scale (mrs) are widely used functional impairment and disability scales (ghandehari, ). for daily use in emergency situations at hospital sites the national institute of health stroke scale (nihss) has been proven successful. moreover this deficit scale is also routinely used in clinical stroke trials (goldstein & samsa, ). many papers describe clinical outcomes from acute stroke and the measurement of clinical outcome parameters after suffering from stroke. unlike for other diseases, however, there is no conclusive evidence on the right moment and on which kind of measurement (davalos, castillo, & martinez-vila, ; duncan, jorgensen, & wade, ; hacke et al., ; johnston et al., ; kotila, waltimo, niemi, laaksonen, & lempinen, ; martínez-vila e, ). in addition, different, non-coherent stroke scales (nihss, mrs, bi) are used to describe the results of treatment (ghandehari, ; hacke et al., ; kotila et al., ; ward, payne, caro, heuschmann, & kolominsky-rabas, ). stroke symptoms are equal in all types of stroke (cerebral bleeding or intracranial infarction) and can only be safely distinguished by neuroradiologic imaging. computed tomography (ct) and magnetic resonance imaging (mri) are practical worldwide used imaging modalities for selecting patients to get the right therapeutic strategy (adams et al., ; menon et al., ; menon et al., ; veltkamp, ) noncontrast ct (ncct) discriminates reliably between cerebral ischemia and intracranial hemorrhage and therefore provides the information to make decisions about therapy options in most of cases (menon et al., ; von kummer et al., ). ct angiography (cta) can easily depict (carotid or intracranial) vessel occlusion and therefore helps clinicians in selecting patients eligible for endovascular treatment (adams et al., ; menon et al., ) ct perfusion (ctp) visualizes the infarct core and the tissue at risk. additional dynamic angiography views generated from raw ctp data are helpful in grading collaterals with excellent temporal resolution (menon et al., ). mr diffusion imaging (dwi), mr perfusion imaging (mrp) and mr angiography (mra) of patients with acute stroke symptoms are also helpful to rule out stroke mimics and in categorizing the type of stroke (menon et al., ). mr imaging is more time consuming than ct imaging and motion artifacts are more common (menon et al., ; menon et al., ). therefore, in most vol. , no. buttinger et al.: imaging and stroke outcome ... national guidelines only standard ct or mri and not perfusion or angiography are included. there is also limited data about outcome from acute stroke and the role of mri imaging. burke et al (burke, gelb, quint, morgenstern, & kerber, ) looked for circumstances influencing management of patients with acute stroke and outcome parameters in cases where mri was used (burke et al., ). if a patient reaches the emergency department with symptoms of an acute stroke quick and robust neuroradiologic imaging (ct or mri) is necessary for managing further therapeutic steps (audebert & fiebach, ; menon et al., ). time consuming imaging procedures (ctp, mra, mrp) should only be used in special situations (e.g. wake up stroke) or in controlled stroke trials (audebert & fiebach, ). aim of the present study as discussed in the literature review, there is little evidence on the relation between the type of imaging and outcome. the aim of the underlying paper is to analyze more in detail the triangular relation between different imaging types (ct/mri), treatments used (thrombolysis) and outcomes (mortality) for stroke patients in order to improve clinical practice guidelines. our proposition for the optimization of the clinical process is the following: we suggest that ( ) a pre-notification (aviso) from the ambulance will reduce the time to image acquisition, ( ) the different types of imaging (ct vs. mri) will lead to differences in treatment and ( ) therefore, different outcomes regarding the type of imaging can be observed. methodology for testing our assumptions, we use a rich stroke registry dataset from upper austria containing , documented insults from hospitals between october until december . due to missing data, only of the . years can be used for the present analysis. furthermore, we only include cases admitted to the hospitals with one of the following two diagnoses: (i) cerebral infarction (icd- code i ) or (ii) intracranial hemorrhage (icd- code i -i ). our primary outcomes include the time to image acquisition measured on a -point ordered scale from ( =image prior to admission, =less than . hours, = . – hour, = – hours to =image more than hours after admission to the hospital), the probability of receiving thrombolysis ( =yes, =no) and in-hospital mortality. secondary outcomes include -day mortality, -day mortality and -day mortality. in the statistical analysis, a mann-whitney u test is used to compare the median time to imaging acquisition between cases where an aviso happened and cases without aviso. binomial logistic regressions with hospital fixed effects are used to estimate odds ratios (or) and % confidence intervals (ci) for (i) the association between mri, ct and the probability of receiving thrombolysis and athens journal of health december (ii) mri, ct and mortality rates controlling for age (measured in years), sex, the stoke severity measured with the national institutes of health stroke scale (nihss) and time to image acquisition for the two main stroke subtypes using stata ©. results from the overall database of . years, only years could be used as all the relevant variables were coded properly and no systematic misses could be detected what reduces the number of cases to , . as some of the analyses we are referring to only some of the hospitals in the database (e.g. hospitals having both, ct and mri) for some of the analyses the number of cases are reduced further down to a lowest number of , . our first proposition was that a pre-notification (aviso) from the ambulance or from the emergency doctor significantly reduces the time from admission to image acquisition. figure shows the distribution of the variable "time to image" by aviso state. when an aviso happened (right panel figure ) almost % of patients receive a ct or mri within the first minutes, whereas without aviso (left panel figure ) this proportion drops to less than %. using a mann-whitney u test for testing the difference in the two distributions, a significant difference is found between cases with and without pre-notification (p< . ). our first result therefore shows that an aviso significantly reduces the time span between admission and image acquisition. figure . pre-notification at the hospital and time to picture prior subm. . - h - h > h< . h prior subm. < . h . - h - h > h no aviso aviso p e rc e n t time to image our second proposition was that using different types of imaging will lead to differences in treatment measured by whether patients receive thrombolysis vol. , no. buttinger et al.: imaging and stroke outcome ... or not. we did this analysis in two steps, testing differently the hospitals that have both, cts and mris and the hospitals only having cts. in the hospitals having both, , cases can be analyzed. table . influence of imaging on thrombolysis rate within hospitals having both, mri and ct thrombolysis rate variables or (se) % ci mri (= ) . ( . ) . - . ct (= ) . ( . ) . - . age (in years) . ( . ) . - . female (= ) . ( . ) . - . time to image . ( . ) . - . nihss score . ( . ) . - . constant . ( . ) . - . observations , notes: binomial logistic regression with hospital fixed effects and robust standard errors (se) clustered on patient level in parentheses. table shows the results for running a logistic regression where the probability of thrombolysis is regressed on both mri and ct controlling for additional covariates for hospitals having both ct and mri. the results show that when an mri is used, the odds of thrombolysis is . times higher than without mri (p< . ) whereas when a ct is used the odds of performing a thrombolysis significantly decrease to . (p< . ) compared to no ct. in addition, table also shows that for patients with a higher nihss score the odds for thrombolysis increase significantly while for patients where the time span between admission and image acquisition is high the odds for thrombolysis decrease significantly. when testing the frequency of thrombolysis between hospitals with both mri and ct and hospitals only having ct (n= ), we observe a slightly higher rate of thrombolysis in hospitals with both ct and mri (or= . , ci: . - . ). this result, however, is not significant, therefore the treatment behavior within the first group differs depending on the imaging type used, but the treatment behavior does not differ between hospitals having both imaging types and hospitals only having ct. as we assumed in proposition ( ), the different treatment behavior analyzed in proposition ( ) should lead to different outcomes. this should only be true for cerebral infarction, as bleeding can be seen in both, ct and mri. to test our proposition, we run logistic regressions for in-hospital mortality, as well as -day, -day and -day mortality. athens journal of health december table . influence of imaging on in-hospital mortality for hospitals having both, mri and ct for cerebral infarction (icd- i ) in-hospital mortality variables or (se) % ci ct (= ) . ( . ) . - . mri (= ) . ( . ) . - . age (in years) . ( . ) . - . female (= ) . ( . ) . - . time to image . ( . ) . - . nihss score . ( . ) . - . constant . ( . ) . - . observations , notes: binomial logistic regression with hospital fixed effects and robust standard errors (se) clustered on patient level in parentheses table shows the results for regressing in-hospital mortality on the two imaging types for hospitals having both mri and ct and for patients diagnosed with cerebral infarction. controlling for additional covariates, the results show that running an mri is associated with a significantly lower in-hospital mortality (or= . , ci: . - . ), whereas for ct we do not find any significant relation. interestingly, time to image – though a critical variable in guidelines – has no influence on mortality (table ). table . influence of time to picture i - ( ) ( ) ( ) ( ) variables in-hospital mortality -day mortality -day mortality -day mortality age (in years) . *** ( . ) . ( . ) . ** ( . ) . *** ( . ) female (= ) . ( . ) . ( . ) . ( . ) . ( . ) time to picture . ( . ) . ( . ) . ( . ) . ( . ) notes: binomial logistic regression with hospital fixed effects and robust standard errors (se) clustered on patient level in parentheses when running the same regressions for our secondary outcomes ( -day, - day, -day mortality), the results remain robust (tables a -a in the appendix). in sum, our results show that ( ) a pre-notification has a significant influence on time to image, ( ) for hospitals having both, ct and mri, using mri leads to a significantly higher thrombolysis rate and ( ) therefore using mri (when having a cerebral infarction), is associated to lower mortality rates. this can be due to higher thrombolysis as maybe the doctors feel more secure, but that cannot be proved with the data ( ) however, time to image has no impact on mortality rates. vol. , no. buttinger et al.: imaging and stroke outcome ... discussion the two main causes of acute stroke (intracranial bleeding vs. cerebral ischemia) need different therapeutic strategies: small hemorrhages without brain herniation disappear by phagozytosis, larger bleedings often need to be evacuated (craniectomy). in case of cerebral ischemia rapid reperfusion techniques (i.v. thrombolysis, endovascular therapy) are necessary in order to supply the brain with blood again. in acute stroke non-contrast computed tomography (ncct) helps to distinguish intracranial bleeding from cerebral ischemia and is often followed by ct-angiography in order to select patients with a proximal occlusion of a large intracranial vessel for endovascular treatment within the first hours (audebert & fiebach, ). if there is no information about the beginning of the symptoms (e.g. wake up stroke) mri (dwi, perfusion) is used to distinguish between infarct core and penumbra areas (mismatch imaging) (berkefeld & neumann-haefelin, ). on this way patients eligible for endovascular therapy can be selected properly. head ct is less time consuming than performing mri of the neurocranium and enables door-do-needle time of minutes or less to stroke patients (i.v. thrombolysis). on the other hand mri is more sensitive in detecting cerebral ischemia and penumbral tissue loss. what we expected was the positive impact of pre-announcement on the time to the imaging (ct or mri). this is in line with the literature and the rational expectations. however, there is no significant correlation between time to picture and mortality. maybe this can be that the time span can really be longer as discussed or mortality is the wrong outcome indicator for this improvement of processes. using the barthel-index (schlote, krüger, topp, & wallesch, ), a nursing based index on activities of daily living would probably either support this result or lead to different results. the latter proposition would be suggested by us. we tested treatment behavior in hospitals having both, mri and ct and in hospitals only with a ct. while between those two groups, no significant differences exist, there are significant differences within the group of the hospitals having both. in the latter hospitals, treatment behavior of mds differs as a function of imaging. probably, if they are used to having images more sensitive in detecting cerebral ischemia, physicians feel more secure having mri and are more cautious in giving lysis i.v. if they are not really sure. in opposite to a recent study (hansen et al., ) our findings demonstrate lower mortality rates when mr-imaging was performed. these different results could be subject for further research. in the long run, due to additional reperfusion techniques (mechanical thrombectomy) (evans et al., ), guidelines will change, however in many countries this will take some time and then (ct- or mr-) angiography will be the standard and then those differences should no longer be the case. athens journal of health december conclusion in hospitals equipped with two imaging modalities (ct and mri), using mri leads to a significantly higher thrombolysis rate and is associated with lower mortality rates. though pre-notification significantly lowers time to image, it does not influence mortality in patients with acute stroke. retrospective real-world data analysis can – due to high specificity – complement insights from clinical data (geisel-marbaise & stummer, ), however it cannot replace it. our data show a significant difference in treatment behavior based on imaging modalities more sensitive for detecting cerebral ischemia. prospective studies however should prove the causality. limitations due to data quality issues only part of the database could be used. in future research, better standardized routine data from stroke registers should be able to compare pairs of patients with additional data on activities of daily living. ethical approval an approval by a local ethic committee was not necessary due to the local hospital act regarding the use of non-interventional standard data; 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( . ) . - . mri (= ) . ( . ) . - . age (in years) . ( . ) . - . female (= ) . ( . ) . - . time to image . ( . ) . - . nihss score . ( . ) . - . constant . ( . ) . - . observations , notes: binomial logistic regression with hospital fixed effects and robust standard errors (se) clustered on patient level in parentheses. table a . influence of imaging on -day mortality for hospitals having both, mri and ct for cerebral infarction (icd- i ) -day mortality variables or (se) % ci ct (= ) . ( . ) . - . mri (= ) . ( . ) . - . age (in years) . ( . ) . - . female (= ) . ( . ) . - . time to image . ( . ) . - . nihss score . ( . ) . - . constant . ( . ) . - . observations , notes: binomial logistic regression with hospital fixed effects and robust standard errors (se) clustered on patient level in parentheses. table a . influence of imaging on -day mortality for hospitals having both, mri and ct for cerebral infarction (icd- i ) -day mortality variables or (se) % ci ct (= ) . ( . ) . - . mri (= ) . ( . ) . - . age (in years) . ( . ) . - . female (= ) . ( . ) . - . time to image . ( . ) . - . nihss score . ( . ) . - . constant . ( . ) . - . observations , notes: binomial logistic regression with hospital fixed effects and robust standard errors (se) clustered on patient level in parentheses. vol. , no. buttinger et al.: imaging and stroke outcome ... athens journal of health - volume , issue – pages - https://doi.org/ . /ajh. - - doi= . /ajh. - - interrelation of the population awareness of the presence of an increased risk of developing type diabetes mellitus by anastasiya sachkouskaya  maria rusalenko † tamara sharshakova ‡ irina savasteeva  diabetes mellitus (dm) is one of the most important public health problems in the world. the aim of the study is to evaluate the initial level of knowledge of the population about risk factors, the first signs and complications of the disease, and to define the weaknesses of hygienic education of the population. also we have conducted comparative analysis of the psychosomatic status of patients with type diabetes mellitus (t dm) and without diabetes. during the study, people were interviewed about awareness of diabetes issues and the -year risk of developing t dm (findrisc score) was estimated. interrelation of the population awareness of an increased risk of developing t dm was studied. eating behavior was studied using the dutch eating behavior questionnaire (debq). hospital anxiety and depression scale (hads) was used to assess the psychological and emotional status. stress-resistance was studied using the social readjustment rating scale (srrs). personality features were assessed using the toronto alexithymia scale. % of respondents of population were not informed about the risk factors for diabetes, % - about the first signs of the disease; % - of possible complications. the largest proportion of factors that significantly influenced the -year risk of developing t dm were modifiable behavioral factors, namely, body mass index (bmi), waist circumference (wc), daily availability of -minute activity and consumption of vegetables. about half of the respondents do not follow the recommendations on rational diet, physical activity, smoking cessation and alcohol consumption. low level of awareness of these issues leads to underestimation of existing risk factors, unwillingness to change the habitual lifestyle and, as a consequence, increases the risk of diabetes. thus, it is necessary to improve the awareness of both the population and specialists in diabetes issues, increase responsibility of medical staff to the patient, increase the interest of the population to a more conscious and responsible attitude to their own health. keywords: awareness, diabetes mellitus, prediabetes, psychosomatic status introduction chronic non-communicable diseases (cncds) are the leading causes of death throughout the world health organization (who) european region. more than % of all deaths are caused by one of four cncds - cancers, cardiovascular diseases, diabetes and chronic respiratory diseases. in the republic of belarus, as in other countries, cncds remain the main cause of morbidity, disability and premature mortality, accounting for % of deaths and % of overall morbidity  assistant professor, public health department, gomel state medical university, belarus. † vice director, republican scientific and practical center for radiation medicine and human ecology, belarus. ‡ professor & head, public health department, gomel state medical university, belarus.  doctor-statistician, republican scientific and practical center for radiation medicine and human ecology, belarus. https://doi.org/ . /ajh. - - vol. , no. sachkouskaya et al.: interrelation of the population awareness... (who ). according to recent studies, % of the patients who has several cncds are persons aged under (who ). currently, diabetes has the leading prevalence rate among all non-communicable diseases. the number of people with diabetes has increased from million in to million in . the global prevalence of diabetes among people over years has increased from . % in to . % in . the prevalence of diabetes is increasing faster in middle- and low-income countries (who ). according to the international diabetes federation (idf), in , diabetes accounted for about . million deaths worldwide (idf ). in more than half of cases t dm occurs in active working age ( - years). it must be noted that according to the experts of the idf the number of people with diabetes aged - years was predicted to rise to million (uncertainty interval: - million) by (ogurtsova et al. ). diabetes mellitus is a major public health problem worldwide. this disease has become one of the major causes of premature death in most countries. this is also true to belarus. in the republic of belarus as of january , , there were , patients with diabetes under follow-up, including t dm – , people, t dm – , people (prevalence . %), gestational diabetes - , other specific types of diabetes – , . the number of first time diagnosed diabetes has increased of - % per year over the last years. in the general structure of the prevalence of diabetes mellitus in belarus, t dm is % . with the increase in the prevalence of t dm in belarus, identifying t dm at early stage with simple and accurate methods becomes a public health priority. the role of stress in the etiology of diabetes is difficult to define and measure, but there is significant evidence of its metabolic consequences. stress is often observed in conjunction with the diagnosis of diabetes and it alters the glucose metabolism and the immune response (falco et al. ). premorbid psychological features of the personality and its basic parameters (temperament and character) form the basis of any psychosomatosis or psychological trauma. researchers at the university of munich identified three main reasons contributing to the development of diabetes in terms of psychosomatic: post-traumatic depression, chronic psychological problems in the family and increased anxiety (poberey and mellina ). that is why there is the interest in the study of eating disorders accompanied by specific features of thinking and behavior in obesity and t dm. an important measure to reduce burden of diabetes is the participation of the patients in the management of their disease. that is why, the main aims of this research are ) to study the population awareness of the risk factors, symptoms and complications of diabetes mellitus; ) to estimate -year incident of diabetes and evaluate the impact of the level of public awareness on the -year risk of developing type diabetes; ) to consider the problem of psychosomatic relationships in diabetes. knowledge of the distinctive features of the patientʼs psychological profile, based on the study of cognitive, emotional and behavioral characteristics, may be retrieved from https://bit.ly/ nx mnn. (in russian) athens journal of health december enable the doctor and patient to interact productively in the process of managing of diabetes. literature review the term diabetes mellitus describes a metabolic disorder of multiple aetiology characterized by chronic hyperglycaemia with disturbances of carbohydrate, fat and protein metabolism resulting from defects in insulin secretion, insulin action, or both (ada , who ). a degree of hyperglycemia sufficient to cause pathologic and functional changes in various target tissues, but without clinical symptoms, may be present for a long period of time before diabetes is detected (ada ). modern laboratory capabilities in diagnostics make it possible to detect the condition of "prediabetes". "prediabetes" is the term used for individuals whose glucose levels do not meet the criteria for diabetes but are too high to be considered normal. this term used for individuals with impaired fasting glucose (ifg) and/or impaired glucose tolerance (igt) and indicates an increased risk for the future development of diabetes (ada ). currently, a serious problem is in the lack of alertness for both doctors and patients at this stage of the disease. prediabetes should not be considered as an independent clinical form of the disease, but rather as an increased risk of developing diabetes and cardiovascular diseases (cvds). several research studies have shown success of interventions designed for treatment of prediabetes with sustained reduction in incidence of diabetes. it should be noted that the development of t dm can be prevented through activities aimed at changing the lifestyle (bansal , hopper et al. , knowler et al. , li et al. , lindström et al. , natangelo et al. ). according to the data of american diabetes association (ada), the united states diabetes prevention program demonstrated that intensive lifestyle interventions (ils) can reduce the incidence of t dm by % within years. the biggest determinant of risk reduction was noted to be weight loss (ada , lindström et al. , knowler et al. ). also randomized studies demonstrate that lifestyle modification, which consists only in reducing body weight and increasing physical activity, prevents or slows the progression of glucose metabolism disorders in persons with igt, which emphasizes the importance of explaining the need for lifestyle modification and assisting in its implementation (rydén et al. ). nowadays, - % of patients with diabetes at the time of diagnosis already have complications associated with the disease (dedov and shestakova ). the grave complications, such as amputations of lower extremities, blindness and chronic kidney disease adversely affect the ability to work and the quality of life of the patients. diagnosis of diabetes in the early stages and timely prescribed therapy provide long-term positive results in the treatment of patients with diabetes by preventing or delaying the development of complications (stratton et al. ). therefore, one of the important goals is to increase the awareness of the general vol. , no. sachkouskaya et al.: interrelation of the population awareness... population about the risk factors, the opportunities for prevention and early detection of diabetes. previous studies have shown that individuals with inadequate health literacy had significantly higher rates of hypertension ( . % vs . %), diabetes mellitus ( . % vs . %), heart failure ( . % vs . %), and arthritis ( . % vs . %) with those with adequate skills. inadequate health literacy was a significant independent predictor of having diabetes mellitus and heart failure (wolf et al. ). patients with inadequate functional health literacy are also less likely to know basic elements of their care plan for diabetes and hypertension (e.g., low-salt diet, symptoms of hypoglycemia, normal range for blood pressure or blood glucose level) (williams et al. ). the issues of assessing the level of knowledge of the population about diabetes and its possible relation to development of t dm have not been yet studied in the republic of belarus, which predetermined the aim of the study. the aim of this study is to specify and evaluate the awareness of the population of belarus about the risk factors, symptoms, complications of diabetes mellitus and basic preventive measures of pathology. further, in this study we regard the possible correlation between knowledge of population about diabetes and -year risk of developing t dm. moreover, in the course of the research we interviewed sample of population in order to regard the problem of psychosomatic relationship in diabetes. through this, we hope to assess the initial level of knowledge of the population about risk factors, the first signs and complications of the disease, and also to identify the weaknesses of health literacy of the population for the purpose of improving diabetes prevention and decrease prevalence of the disease. materials and methodology the research data were collected during spring from the population who applied for medical assistance to outpatient health organizations (organizations which provide primary healthcare in belarus) in gomel, belarus. these institutions were selected as that is exactly where the patients have the first contact with the doctor; and there is possibility to study initial level of knowledge about diabetes. the responders were interviewed by the researcher or filled out the questionnaire by themselves. the study was approved by the local executive committee of gomel. all subjects provided informed written consent prior to participation in the study and agreed to anonymous use of their data. the participation was voluntary. study of the population awareness of diabetes and its prevention anonymous questioning was used as an investigation method. the population awareness questionnaire included: athens journal of health december  personal data (sex, age);  sections about diet, physical activity, adherence to prevention, smoking and drinking alcohol habits, sources of information on diabetes; and  questions about the risk factors for the diabetes, symptoms and complications specific for this pathology. the main exclusion criteria were:  patients with a diagnosis of diabetes;  medical workers; and  patients with acute conditions, exacerbations of chronic diseases, with chronic diseases in the terminal stage, as well as with mental disorders. evaluation of the -year risk of developing t dm the evaluation of the -year risk was carried out using the findrisc scale proposed by lindström and tuomilehto ( ). findrisc is a simple self- administered questionnaire which can be used as an initial diabetes screening in primary care or community settings (zhang et al. ). it takes into account the usual clinical characteristics, such as age (years), body mass index (bmi: kg/m ), waist circumference (wc: cm), daily physical activity (having at least minutes of physical activity during work or at leisure time vs. not), daily consumption of fruits, vegetables, and berries (consume every day vs. not), use of antihypertensive medication, history of high blood glucose, and family history of diabetes. bmi and wc were identified from the anthropometric data measured by researchers. the answers to all the other questions of the findrisc were identified via self- reported answers. interpretation of results was carried out by the sum of the scores from questions and ranges from to (saaristo et al. , zhang et al. ). ten-year risk of developing type- diabetes mellitus according to findrisc.  < - low estimated: in will develop disease;  - - slightly elevated estimated: in will develop disease;  - - moderate estimated: in will develop disease;  - - high estimated: in will develop disease;  - very high estimated: in will develop disease (lindström and tuomilehto ). study of psychosomatic relationships in diabetes eating behavior was studied using the dutch eating behavior questionnaire (debq). the dutch eating behavior questionnaire (debq) was developed to measure eating styles that may contribute to or attenuate the development of overweight. it comprises three scales that measure emotional, external and restrained eating (cebolla et al. ). psychosomatic theory focuses on emotional eating (eating in response to negative emotions such as depression and vol. , no. sachkouskaya et al.: interrelation of the population awareness... discouragement) as an atypical response to distress. externality theory emphasizes eating in response to food-related stimuli, such as the sight, smell and taste of food, regardless of the internal state of hunger and satiety. restraint theory focuses on the possible psychological side effects of dieting, specifically the disinhibition effect: overeating by dieters when their cognitive resolve to eat less than desired is abandoned (barrada et al. ). hospital anxiety and depression scale (hads) was used to assess the psychological and emotional status. the hads was developed from a study conducted in the outpatient clinic of a general medical hospital. the findings of this study were published by zigmond and snaith ( ). the questionnaire comprises seven questions for anxiety and seven questions for depression, and takes - min to complete (stern ). stress-resistance was studied using the social readjustment rating scale (srrs). the srrs was created by thomas holmes and richard rahe in the late s to provide a standardized measure of the impact of a wide range of common stressors. personality features are assessed using the toronto alexithymia scale (tas). it was developed in . the tas is a -item self-report measure of alexithymia with good internal consistency and test-retest reliability, and a factor structure congruent with the alexithymia construct (bagby et al. ). statistical analyses statistical analyses were carried out using nonparametric statistics, since the distribution within the groups was not normal. the data of descriptive statistics are expressed as mean me (q ; q ). the mann-whitney test was used to detect statistically significant differences. the chi-squared test was used to compare frequencies between the groups, fisherʼs method was used in groups with less than respondents. a linear regression analysis was performed to identify the factors that significantly influenced the stratification of the -year risk of developing diabetes mellitus. statistical analyses were performed with spss statistics . . results study of the population awareness of diabetes and its prevention the research group consisted of people (figure ), of which men - ( . %), women - ( . %). athens journal of health december figure . distribution of respondents by sex the number of respondents represented by the age group of - years was %. the share of the - age group was %; - years - %. - years - %, over years - % (figure ). an analysis of the age distribution of the respondents showed that the majority of those who took part in the survey were patients of the young and able-bodied age of - years - %. figure . distribution of respondents by age in the course of the study we have analyzed questions about population awareness of the risk factors, main symptoms and complications of diabetes. we asked respondents whether they were aware of risk factors for diabetes. the results showed that the proportion of respondents informed about the risk factors for diabetes varied from % in the - age group to % in the - age group and did not significantly differ between age groups. it can be said that, in general, the level of respondentsʼ knowledge of the risk factors for diabetes is above average (figure ). vol. , no. sachkouskaya et al.: interrelation of the population awareness... figure . the level of awareness of risk factors for development of dm according to the age groups source: authorsʼ estimations. the proportion of people who was unsure or did not know at all about the risk factors for dm has ranged from % in the - age group to % in the - year old group. further, we asked if the respondents knew the symptoms of diabetes. sixty two present of the respondents indicated that they were aware of the symptoms of dm (figure ). the rest of participants ( %) noted that they did not know the symptoms of diabetes. figure . the level of awareness of dm symptoms according to the age groups source: authorsʼ estimations. athens journal of health december in the course of the analysis of the population awareness of possible complications of diabetes, statistically significant differences among the age groups were not obtained. forty seven percent of respondents indicated correctly the conditions that could complicate the course of diabetes. about a quarter of respondents found it difficult to answer about possible complications of diabetes. twenty nine percent of respondents do not know about any complications of diabetes suggested in the answers. further, the issue of preventive measures, which the population takes in its daily life, was analyzed (table ). in the age groups of - years and over years, the proportion of respondents who followed several recommendations for correcting behavioral risk factors (healthy nutrition; physical activity; rejection of "bad habits", such as smoking, alcohol and drugs consumption; annual blood test for glycemia level control) was % and %, respectively. the lowest share in this indicator was in the age group of - ( %), in the age groups of - years and - years, the share was % and %, respectively. the analysis has showed that less than half of respondents observe several preventive recommendations in everyday life. table . preventive measures, which the population takes in its daily life preventive measure age group - years old, % - years old, % - years old, % - years old, % over years old, % healthy diet physical active lifestyle cessation of smoking and alcohol consumption annual blood test for glycemia level control nothing source: authorsʼ estimations. attention is drawn to the fact that about / ( %) of respondents aged from to do not follow the recommendations on healthy lifestyle, and the proportion of similar respondents aged form to years was less than / ( %), and this difference was statistically significant (p< . ). the number of tobacco smokers and people who consumes alcohol in the age group of - years constituted %, and it was significantly higher (p< . ) compared to other age groups. in the age group over years, a significantly higher number of respondents ( %) answered that they do not have a habit of smoking and alcohol consumption (p< . ). this data indicates on a more conscious attitude to their health in older age groups. the obtained results suggest a need for extension of public awareness campaigns and diabetes education programmes in order to intensify preventive vol. , no. sachkouskaya et al.: interrelation of the population awareness... measures and the motivation of the population to preserve and strengthen their health. evaluation of the -year risk of developing t dm the sample population for assessing the -year risk of t dm development consisted of patients, ( . %) men and ( . %) women. the greatest number of respondents is represented by the age group of - years - %. the share of the - age group was %; - years old - %. - years - %, over years - % (figure ). figure . distribution of respondents by age an analysis of the obtained data of assessment the -year risk of developing t dm showed that % of respondents had a value of bmi that exceeded the upper limit of the norm of . kg/m , which confirms the high prevalence of overweight and obesity within the population who took part in the study (according to who data, the bmi value of - kg/m is characteristic for excess body weight, and bmi> kg/m for obesity). with age, there was a tendency of the increase of the proportion of respondents with excessive body weight and obesity. the smallest number of people with overweight and obesity was recorded in the - age group ( %). this value was significantly lower than in the age groups from to years ( %, p< . ), from to years ( %, p< . ) and over years ( %, p< . ). according to the recommendations of idf experts, normal values of waist circumference in europids women are less than cm, in men - cm. with a value of more than cm in women and cm in men, there is a high risk of developing type diabetes mellitus and cardiovascular pathology (idf ). within the surveyed, the largest number of respondents ( %) with normal waist circumference values was recorded in the - age group, which significantly differed with the age groups of - years ( %, p< . ), - years ( %, p< . ) and over years ( %, p< . ). moreover, waist circumference > ( ) cm (characteristic for abdominal obesity and metabolic syndrome) was frequent within the subjects older than years than wc - ( - ) cm. athens journal of health december the most important behavioral factors characterizing the motivation of the population for healthy lifestyle are their physical activity and application of the principles of nutrition. according to the survey results, the largest proportion of people who observe the physical activity regime for at least minutes a day is in the - age group and is %. in other age groups, there was a significant (p< . ) decrease in the proportion of people who noted the daily physical activity (table ). table . prevalence of risk factors for development of t dm in respondents of different age groups risk factor possible answer age group - years old, % - years old, % - years old, % - years old, % over years old, % body mass index, kg/m < **** *** *** - > waist circumference, cm < ( ) * ** **** - ( - ) > ( ) daily availability of -minute activity yes *** *** *** *** no how often do you consume vegetables? every day not every day have you had to take antihypertensive drugs? no yes ***** have you ever had an increased level of glucose? no yes *** was there any diabetes mellitus in your family? yes *p< . , **p< . , ***p< . , ****p< . , *****p < . source: authorsʼ estimations. based on the evidence-based european guidelines for the prevention of t dm, it has been shown that lifestyle modification, consisting only in reducing body weight and increasing physical activity, prevents or slows the progression of https://www.multitran.ru/c/m.exe?t= _ _ &s =%ee%ea%f %f %e %ed%ee%f %f %fc% %f %e %eb%e %e https://www.multitran.ru/c/m.exe?t= _ _ &s =%ee%ea%f %f %e %ed%ee%f %f %fc% %f %e %eb%e %e vol. , no. sachkouskaya et al.: interrelation of the population awareness... glucose metabolism disorders in persons with itg. therefore, people at high risk for t dm and with the present itg should be educated about the need for lifestyle modification and assistance in its implementation (paulweber et al. ). the survey data showed that daily consumption of vegetables was noted by the % respondents up to % respondents in the - age group and in the - age group respectively. attention is drawn to the fact that only half of the respondents ( %), when analyzing the group as a whole, note the daily consumption of vegetables. there was not significant difference in prevalence of family history of diabetes between the age groups. thirty percent of all respondents indicated the presence of diabetes mellitus in family history. as it was expected, the greatest number of people with a history of episodes of increased glycemia and constantly taking antihypertensive drugs was noted in the age group of years and older, which was statistically significantly different from the age group of - years (p< . and p< . , respectively). to determine the factors that significantly affected the magnitude of - year risk of t dm, a linear regression was performed with the construction of a linear regression model taking into account the significance (p< . ) or the influence of selected predictors at the level of stable trends (p< . ). the age (b = . , p< . ) had a significant effect on the growth of the -year risk of dm development, moreover the highest risk was determined in the age group of - years – young able-bodied population. also, an increase in the -year risk of development of t dm was influenced by the values of bmi (b= . ; р< . ) and waist circumference (b= . ; р< . ). regression analysis shows that a -year risk of developing type t dm increases not only with obesity, but also at the stage of overweight. the lack of physical activity had a significant impact on the growth of the -year risk of developing t dm (b= . ; р< . ). among respondents who indicated regular physical activity, the median risk for developing t dm was . and was significantly lower than the median of respondents who did not have physical activity . (z=- . ; р< . ). as it was shown earlier, in the age groups older than years there was a decrease in the proportion of people who indicated the presence of daily physical activity. the lack of vegetables in the daily diet increased the risk of t dm at the level of a stable trend (b= . ; р= . ). respondents who consumed vegetables on a daily basis had a risk median of . and it was significantly lower than the median risk of respondents who did not consume vegetables daily . (z=- . ; р< . ), with a specific gravity of about half all age groups. the presence of hypertension requiring medication correction had a significant impact on the growth of the -year risk of developing t dm (b= . ; р< . ). in respondents who did not take antihypertensive drugs on a regular basis, the risk median was . and it was significantly lower against the median of respondents suffering from ah . (z=- . ; р< . ). the average risk for respondents who had an anamnesis without episodes of hyperglycemia was . ( . ; . ) and it was significantly lower than the median of respondents who had transient hypoglycemia disorders . (z=- https://www.multitran.ru/c/m.exe?t= _ _ &s =%ee%ea%f %f %e %ed%ee%f %f %fc% %f %e %eb%e %e athens journal of health december . ; р< . ). the greatest number of people taking antihypertensive drugs and noting an increase in the level of glycemia was noted in the age group over years. in addition, an analysis was made of the likelihood of developing t dm in different age groups of patients (table , figure ). table . structure of a -year risk of developing t dm risk of development of type dm age group - years, % - years, % - years, % - years, % over years, % low lower than points slightly elevated - points moderate - points high - points very high higher than source: authorsʼ estimations. in the age groups of - years, - years and - years, the overwhelming majority of respondents had a low risk of developing t dm (lower than points), and a very high risk (higher than points) was not registered at all. among the population years and older there was a shift towards a moderate level of risk increase (from points). figure . structure of a -year risk of developing t dm source: authorsʼ estimations. in the age groups of - years and over years there was an increase in the number of people with a moderate and high risk of developing t dm. in the vol. , no. sachkouskaya et al.: interrelation of the population awareness... age group over years, there was registered the greatest proportion of people with high and very high risk, which amounted to % and %, respectively. this trend is due to a combination of risk factors in these age groups. it should be noted that the most significant factors that significantly influenced the risk of developing t dm were controlled behavioral factors, namely: bmi, wc, adherence to proper nutrition and physical activity. further, some data were compared that were obtained during the analysis of the level of awareness of the population on dm issues and an assessment of the -year risk of developing t dm. it is noteworthy that % of respondents indicated that they know about the risk factors for the development of the disease, of which only % observe several recommendations on healthy lifestyle, including healthy diet, a physically active lifestyle and a refusal to smoke and alcohol consumption. there was shown that these parameters (bmi, wc, daily -minute activity and vegetables in the diet) had the most significant impact on the -year risk of developing t dm. obtained results may indicate to lack of motivation of population to take care about their health. efforts to improve knowledge about diabetes, increase promotion of healthy behaviors and availability of changing lifestyle programs are needed to slow the growth in new cases of diabetes (geiss et al. ). study of psychosomatic relationships in diabetes respondents aged - were interviewed, of them had t dm with a duration of more than years, - persons without diabetes. the median of the bmi was . ( . , . ) kg/m : with t dm - bmi . ( . , . ) kg/m ; in persons without t dm - . ( . , . ) kg/m . comparative analysis of the eating behavior of patients with t dm and individuals without t dm showed no statistically significant differences in the groups. at the same time, respondents with normal body weight and overweight/ obesity have differences in all scales of questionnaire of the eating behavior: restrictive eating behavior p< . ; emotiogenic eating behavior p< . ; external eating behavior p< . . among the respondents with overweight and obesity, there was identified the following distribution styles of eating behavior: the leading eating style (the predominance of emotional, external or restrained eating) was verified in . % of cases; mixed eating style - in . %; there were not detected eating disorders in . %. among the individuals with the presence of leading style of food, there was noted the predominance of emotiogenic style - . %, the second place took the external eating style of . %, and the third - the restrictive type - . %. significant differences in styles of eating behavior have been identified depending on gender: women were significantly more likely to have an emotiogenic style (identified in women, versus men; χ = . ; р< . ), the incidence among women and men of external style and restrictive style. therefore, the styles of eating behavior do not differ depending on the presence or absence of dm and mediate the relationship between the personality characteristics of respondents with overweight. women, in comparison with men, athens journal of health december are dominated by an emotiogenic style of eating behavior, a stimulus to food intake, which becomes not a hunger, but emotional discomfort: anxiety, irritability, bad mood, a sense of loneliness. in the study of psychoemotional status, there was established that subclinical and clinically expressed manifestations of anxiety in persons without t dm are significantly less frequent ( cases per people) than in individuals with t dm ( cases per people; χ = . ; р< . ). the incidence of subclinical and clinically significant manifestations of depression was about . % in patients with t dm and without dm. a significant direct correlation was found in the incidence of clinically significant anxiety with the emotionogenic type of eating behavior in women who are overweight or obese (rs = . ; р< . ). at the same time, the correlation analysis demonstrated the absence of an interrelation of the psychoemotional status of men with the types of eating behavior depending on bmi and the presence of t dm. the study of psychoemotional status demonstrated that the majority of overweight people, even in the absence of t dm, are in a state of disadaptation and psychoemotional stress. absolute majority of patients with t dm ( . %) and persons without t dm ( . %) showed high resistance to stress. at the same time, the proportion of people with a high level of stress among patients t dm is higher than without t dm (χ = . ; р= . ). in patients with t dm, a high level of stress was detected, whereas in patients without t dm there was detected a high level of stress. this may indicate to the high psychoemotional tension and difficulties in overcoming negative psychological situations in t dm. alexithymia - reduced ability in verbalization of emotional states and feelings - is characteristic of people who, for one reason or another, are limited in processing, and therefore aware of emotional impressions, experiences, feelings, causes of actions. among the subjects studied, the non-lecithiemic type of personality was recorded in . % of cases among persons without t dm and in . % with t dm (р> . ). in patients with bmi ≥ kg/m the alexitimic personality type was diagnosed ( points and higher), with bmi < kg/m – in examined. alexithymic type of personality was significantly more common in cases of overweight or obesity (χ = . ; р= . ). in addition, when conducting a correlation analysis, the "alexitimic" personality type showed a direct significant connection with clinically significant anxiety (rs = . ; р< . ). discussion and conclusion one of the objectives of the present study was to assess the awareness of the population about the diabetes and preventive measures of this pathology. the obtained results demonstrate the gaps of knowledge on some issues: % of respondents of population are not informed about the risk factors for diabetes, % - about the first signs of the disease; % - of possible complications. similar study for awareness of type diabetes risk factors and prevention strategies among low-income latinos in lawrence (massachusetts) have shown that this latino vol. , no. sachkouskaya et al.: interrelation of the population awareness... sample had limited knowledge of diabetes risk factors and lifestyle changes that can prevent or delay diabetes onset. moreover, the limited awareness of diabetes risk factors in this sample was paralleled by the limited knowledge of strategies to prevent or delay diabetes onset (rosal et al. ). therefore, an insufficient level of awareness of the population on diabetes mellitus issues leads to low alertness in relation to risk factors and clinical manifestations. study findings demonstrated that % of respondents were aware of the risk factors of t dm, but only % of them follow several recommendations on healthy lifestyle (diet, a physically active lifestyle and cessation of smoking and alcohol consumption). this data may indicate that low adherence to healthy lifestyle among the population is due not only to ignorance, but also to a lack of desire to change behavioral determinants and underestimation of existing risk factors. the study of psychoemotional status demonstrated that the majority of overweight people, even in the absence of t dm, are in a state of disadaptation and psychoemotional stress, which can be a risk factor for the development of a deficit of compensatory resources of the body and the emergence of psychosomatic diseases. recent literature suggests that stress and emotional distress are perceived as triggers for diabetes (coronado et al. , jezewski and poss , george et al. , mier et al. ), as well as depressed individuals are less likely to succeed at lifestyle change efforts and that depression may independently contribute to the development of diabetes (engum , rosal et al. ). this group of people requires not only monitoring the laboratory indicators of carbohydrate and lipid metabolism, but also in the framework of preventive work of carrying out psycho-corrective measures aimed at normalizing the psychoemotional state with the goal of preventing diseases, which may be based on psychosomatic conditions. to have a significant public health impact, tailored programs at the individual level must be matched by changes in policy and the physical and social environments in a truly multilevel approach (castro et al. ). prevention of t dm should begin with convincing the public of the need to modify the lifestyle and habitual settings, and be implemented both at the level of the population as a whole and at the individual level. an important point is to increase the motivation of the population to a more conscious attitude to their own health. when patient characteristics are assessed and understood, health care providers are presented with an opportunity to influence patient efficacy beliefs (thomas et al. ). at the same time, information of preventive and motivational orientation should be accessible and clearly formulated. presented materials other than general phrases, such as: reducing overweight, optimizing physical activity, healthy eating, should contain specific recommendations for lifestyle modification. previous studies have shown that providing patients specific information about their risk of developing diabetes and the expected risk reduction associated with preventive treatments may encourage lifestyle changing. new guidelines and evidence recommend the personalized approach (patient-centered dialogue) to helping patients make treatment decisions (o’brien et al. ). athens journal of health december therefore, preventive measures in relation to dm should be based on a strategy of long-term and multistage work with certain segments of the population, based on knowledge of the behavioral and psychological characteristics of this population, knowledge of its motivations and interests. limitations of the study we obtained interesting results during the study of psychosomatic status of patients with t dm and without diabetes. but the sample of population was quite small, so it needs to be examined in fuller detail. references ada-american diabetes association ( ) diabetes care (suppl. ): s -s . ada-american diabetes association ( ) diagnosis and classification of diabetes mellitus. diabetes care (suppl. ): s -s ada-american diabetes association ( ) standards of medical care in diabetes. diabetes care ( ): - 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( ). systematic review of the efficacy of non-pharmacological interventions in people with lewy body dementia. international psychogeriatrics / ipa, - . https://doi.org/ . /s citing this paper please note that where the full-text provided on king's research portal is the author accepted manuscript or post-print version this may differ from the final published version. if citing, it is advised that you check and use the publisher's definitive version for pagination, volume/issue, and date of publication details. and where the final published version is provided on the research portal, if citing you are again advised to check the publisher's website for any subsequent corrections. general rights copyright and moral rights for the publications made accessible in the research portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognize and abide by the legal requirements associated with these rights. •users may download and print one copy of any publication from the research portal for the purpose of private study or research. •you may not further distribute the material or use it for any profit-making activity or commercial gain •you may freely distribute the url identifying the publication in the research portal take down policy if you believe that this document breaches copyright please contact librarypure@kcl.ac.uk providing details, and we will remove access to the work immediately and investigate your claim. download date: . apr. https://doi.org/ . /s https://kclpure.kcl.ac.uk/portal/en/publications/systematic-review-of-the-efficacy-of-nonpharmacological-interventions-in-people-with-lewy-body-dementia(b d - ffe- f -ab -e bd f f f).html /portal/dag.aarsland.html https://kclpure.kcl.ac.uk/portal/en/persons/anto-rajkumar( c e - b - - - a bfd db).html https://kclpure.kcl.ac.uk/portal/en/publications/systematic-review-of-the-efficacy-of-nonpharmacological-interventions-in-people-with-lewy-body-dementia(b d - ffe- f -ab -e bd f f f).html https://kclpure.kcl.ac.uk/portal/en/publications/systematic-review-of-the-efficacy-of-nonpharmacological-interventions-in-people-with-lewy-body-dementia(b d - ffe- f -ab -e bd f f f).html https://kclpure.kcl.ac.uk/portal/en/journals/international-psychogeriatrics--ipa( dc c-d b - afa- aa-b bc e ).html https://doi.org/ . /s manuscript category: research article title: systematic review of the efficacy of non-pharmacological interventions in people with lewy body dementia running head: non-pharmacological options for lewy body dementia authors and their affiliations: hamilton morrin ton fang ; donald servant ; dag aarsland , anto p. rajkumar , guy’s hospital, king’s college london, great maze pond, london-se rt, uk south london and maudsley nhs foundation trust, bethlem royal hospital, monks orchard road, beckenham- br bx, uk department of old age psychiatry, institute of psychiatry, psychology, & neuroscience, king’s college london, , de crespigny park, london-se af, uk mental health of older adults and dementia clinical academic group, south london and maudsley nhs foundation trust, , denmark hill, london-se az, uk corresponding author: dr. anto praveen rajkumar rajamani, m.d., d.n.b., m.r.c.psych., ph.d., ph.d., clinical lecturer, department of old age psychiatry, institute of psychiatry, psychology, & neuroscience, king’s college london, , de crespigny park, london - se af, united kingdom. email: anto.rajamani@kcl.ac.uk phone: + ( ) word count for abstract : word count for text : number of tables : five number of figure : one supplementary material for online only publication : one key words: dementia with lewy bodies; parkinson’s disease dementia; deep brain stimulation; electroconvulsive therapy; repetitive transcranial magnetic stimulation; exercise. mailto:anto.rajamani@kcl.ac.uk abstract background: pharmacological interventions for lewy body dementia (lbd), especially for its non-cognitive symptoms, are limited in their efficacy and tolerability. clinicians are often uncertain about non-pharmacological interventions and their efficacy in managing cognitive and non-cognitive symptoms of lbd. therefore, we aimed to systematically review existing literature on non-pharmacological interventions for people with lbd. methods: we carried out a systematic search using six databases. all human studies examining impact of any non-pharmacological intervention on lbd were assessed for cognitive, physical, psychiatric, and quality-of-life outcomes. study quality was assessed by effective public health practice project quality assessment tool for quantitative studies and the care criteria checklist. results: prevailing evidence supporting the efficacy of non-pharmacological interventions is weak. we screened papers. fifteen studies (n= ) including case reports were found eligible for this systematic review. interventions and reported outcomes were heterogeneous. deep brain stimulation of the nucleus basalis of meynert reportedly confer cognitive benefit. electroconvulsive therapy and repetitive transcranial magnetic stimulation have been reported to ameliorate depressive symptoms. transcranial direct current stimulation was observed to improve attention. exercise-based interventions reportedly improve various clinically important outcomes. spaced retrieval memory training and environmental intervention for ‘mirror sign’ have also been reported. conclusions: several non-pharmacological interventions have been studied in lbd. although evidence supporting their efficacy is not robust, prevailing preliminary evidence, and limitations of available pharmacological interventions indicate the need to consider appropriate non-pharmacological interventions, while planning comprehensive care of lbd patients. larger trials evaluating the efficacy of non-pharmacological interventions for lbd are needed. introduction lewy body dementia (lbd) is the second most prevalent form of neurodegenerative dementia. the term lbd encompasses two overlapping clinical syndromes, dementia with lewy bodies (dlb) and parkinson’s disease dementia (pdd), which are conservatively estimated to contribute to . - . % (vann jones and o'brien, ) and . - . % (aarsland et al., ) of all dementia, respectively. notably, it has been reported that caregivers of people with dlb experience greater distress because of behavioral symptoms than in alzheimer’s dementia (ad) (svendsboe et al., ). compared with other forms of dementia, lbd patients display an increased risk of mortality (oesterhus et al., ), earlier nursing home admissions (rongve et al., ), raised risk of falling (komatsu, ), and reduced quality of life (figari-jordan et al., ). therefore, whilst lbd is not as common as ad, its relative burden on service users, their caregivers, and society is substantial. although much work has gone into the development of pharmacological therapies for lbd (stinton et al., ), as yet there are no disease-modifying treatments available. management of neuropsychiatric symptoms in people with lbd is challenging. recurrent well-formed visual hallucinations and delusional beliefs are common in lbd, but parkinsonism and severe neuroleptic sensitivity mandate minimizing use of antipsychotics. limitations of available pharmacological interventions for lbd, especially for non-cognitive symptoms, include lack of high quality evidence for their efficacy (stinton et al., ), poor tolerability, and the potential risks of serious adverse effects. hence, non-pharmacological interventions often play an important role in clinical management of people with lbd. systematic research evaluating non-pharmacological interventions for lbd is sparse, and pertinent prevailing evidence is not readily available to interested clinicians. a recent systematic review has reported the impact of exercise therapy in lbd (inskip et al., ), but it did not include other non-pharmacological interventions for lbd, such as transcranial direct current stimulation (tdcs) (elder et al., ), deep brain stimulation (dbs) (barnikol et al., ; freund et al., ), electroconvulsive therapy (ect) (takahashi et al., ), or repetitive transcranial magnetic stimulation (rtms). updated knowledge regarding these non-pharmacological interventions may help clinicians to formulate comprehensive care plans for people with lbd. therefore, we aimed to carry out the first comprehensive systematic review of the efficacy of all reported non-pharmacological interventions for cognitive and non-cognitive symptoms of lbd. methods study design the protocol of this systematic review has been registered (prospero protocol registration number: crd ), and is available online (www.crd.york.ac.uk/prospero/). inclusion criteria we employed broad inclusion criteria, and considered all eligible original studies regardless of their quality or design. (i) population: studies investigating individuals of any gender, age and ethnicity with a clinical diagnosis of lbd were considered. therefore, studies focusing on treatment of individuals with parkinson’s disease (pd) without dementia were not included. additionally, studies which assessed an intervention in any form of dementia without separately reporting outcomes for lbd were not included. these studies were not included because of prior publication of comprehensive systematic reviews on non- pharmacological interventions for people with pd (hindle et al., ) and for behavioral symptoms of dementia (abraha et al., ). animal studies were not included. (ii) interventions: studies investigating any non-pharmacological intervention for lbd were included. these included: physical and occupational therapy, exercise, social interaction, cognitive therapy, mindfulness, behavioral therapy, bright light therapy, tdcs, deep brain http://www.crd.york.ac.uk/prospero/ stimulation, ect, rtms, music therapy, and other potential alternative therapies. these interventions were included regardless of whether they were acute or long-term. (iii) comparison: no restrictions were applied. (iv) outcomes: no restrictions were applied in order to avoid excluding relevant studies. search strategy a systematic search was performed in december using the following six databases: medline, psycinfo, cinahl, embase, cochrane central register of controlled trials, and opengrey. the search strategy was comprised of both ‘population’ and ‘intervention’ terms. these terms were searched in titles and abstracts of papers and grey literature. ‘comparison’ and ‘outcome’ terms were not used to ensure better search sensitivity. the population search terms used were: (‘parkinson*’ and ‘dementia’) or (‘lewy’ and ‘dementia’).the intervention search terms used were: ‘exercise’ or ‘physical therapy’ or ‘occupational therapy’ or ‘social interaction’ or ‘cognitive therapy’ or ‘cognitive treatment’ or ‘mindfulness’ or ‘behavio?ral therapy’ or ‘behavio?ral treatment’ or ‘bright light therapy’ or ‘pet therapy’ or ‘education*’ or ‘music therapy’ or ‘transcranial direct current stimulation’ or ‘transcranial magnetic stimulation’ or ‘deep brain stimulation’ or electroconvulsive therapy’ or ‘alternative therapy’ or ‘non-pharmacological treatment’ or non-pharmacological intervention’ or ‘non-pharmacological approach’. we did not specify any language limits, and we included non-english articles in the search strategy. however, only one non-english paper was identified as relevant (fujiwara et al., ). study selection screening followed several steps, the first of which was merging of duplicates using mendeley desktop . . (mendeley ltd., london, uk). after this, papers with titles unrelated to dementia or pd were excluded, with subsequent exclusion of papers with abstracts which did not mention the use of any non-pharmacological intervention. this was followed by exclusion of full text articles found to be ineligible, more specifically this involved excluding: articles focused on interventions for pd excluding or not controlling for pdd, articles focused on interventions for dementia excluding or not controlling for lbd, and articles providing insufficient details on their methods or outcomes. ultimately, full text articles assessed to be eligible by the authors were reviewed, with resulting suitable articles included in the systematic review. quality assessment quality and potential likelihood of bias of eligible studies were assessed using the care criteria checklist (gagnier et al., ) for case reports, and the effective public health practice project (ephpp) quality assessment tool for quantitative studies (thomas et al., ) for trials. we did not find any eligible qualitative studies. studies were second-marked by independent raters, with any scoring inconsistencies resolved through discussion. data extraction for each study deemed eligible for inclusion, extraction of the following data categories took place. (i) study design: studies were either considered experimental (randomized control trials (rct) and non-randomized control trials (nrct), uncontrolled trials (uct)), or observational (case reports, case series, cross-sectional, case-control, prospective or retrospective cohort). (ii) intervention or exposure: method, frequency, intensity and duration of each study’s non-pharmacological intervention were assessed. (iii) cohort: cohort was classified by any combination of diagnosis, age, gender, living or not living in the community, unified parkinson’s disease rating scale (updrs) (martinez-martin et al., ) or other mobility scores, mini-mental state examination (mmse) (folstein et al., ) or other cognitive test scores, and medications being taken. (iv) outcome: outcomes were classified according to the measurement test or tool used, mean differences between groups, effect sizes, confidence intervals (ci), and statistical difference between groups, if such data were available. data synthesis studies were initially grouped on the basis of types of employed non-pharmacological interventions. they were regrouped on the basis of outcomes relevant to cognitive, neuropsychiatric, and motor symptoms of lbd. we assessed the levels of evidence using guidelines from the oxford center for evidence-based medicine (ocebm-levels-of- evidence-working-group, ). results identified studies figure outlines the study selection process in the preferred reporting items for systematic reviews and meta-analyses (prisma) format. a joint search of embase, medline, and psycinfo unveiled papers. a further papers were found on cinahl, whilst were found on cochrane central register of controlled trials, and were found on opengrey. the eligible articles included a single-blind randomized controlled trial (rct) that included only four people with pdd (telenius et al., ), three uncontrolled trials (uct) (elder et al., ; rochester et al., ; takahashi et al., ), and eleven case reports (barnikol et al., ; ciro et al., ; dawley, ; freund et al., ; fujiwara et al., ; gil-ruiz et al., ; hayden and camp, ; kim et al., ; loher et al., ; rasmussen et al., ; tabak et al., ). quality of included studies when assessing quality of experimental trials, all four identified studies received weak or moderate global rating on the ephpp quality assessment tool (see supplemental digital content (sdc)- attached to the electronic version of this paper at http://journals.cambridge.org/ipg). failure to control for confounders was a common limitation. in the case of exercise interventions, blinding is difficult to achieve because of the nature of intervention. case report quality also varied, ranging from / (barnikol et al., ) to / (dawley, ) on the care criteria checklist (see sdc- ). despite five case reports scoring / or greater, one should note that case reports are inherently susceptible to selection, detection, and reporting biases. this may skew perception of efficacy, especially when outcomes from several case reports are assessed as a group. participant characteristics in total, individuals with lbd were included in this review. there were with pdd, with dlb, and individuals, who are only described as having lbd. table presents further details of the individuals with lbd. notably, the same individual has been assessed in two case reports for different outcomes following the same intervention (barnikol et al., ; freund et al., ) and thus has been assessed as a single person. data on four pdd patients were obtained from a systematic review (inskip et al., ) due to primary data being reported as an average across dementia patients (telenius et al., ). participants were predominantly men ( . %), and mean age was . years ( % ci . - . ). scores indicating baseline cognitive function were reported for various tests including mmse (n= , mean= . , sd= . ), and montreal cognitive assessment (moca) (nasreddine et al., ) (n= , mean= . , sd= . ). years since dementia onset was reported only in six studies (n= , mean= . , sd= . ). five studies have reported years since onset of pd (n= , mean= . , sd= . ). in most studies, individuals took neuropsychiatric medications during the intervention period. however, two studies did not report whether participants were also taking medication (rochester et al., ; takahashi et al., ). http://journals.cambridge.org/ipg efficacy of ect the highest level of evidence for benefits of ect in treating depressive symptoms of lbd comes from the uncontrolled study in which the hamilton depression rating scale (hdrs) score (hamilton, ) was observed to decrease significantly (p< . ) from . (sd= . ) to . (sd= . ) (takahashi et al., ) (table ). the evidence for improvement of psychotic symptoms in people with lbd following ect is limited, with one case series indicating reduction in hallucinations following ect in two out of seven individuals with lbd (rasmussen et al., ) and another case report observing reduction in hallucinations and paranoid delusions following ect (fujiwara et al., ) (see sdc- ). efficacy of dbs a case report examining the effects of bilateral stimulation of the subthalamic nucleus (stn) and the nucleus basalis of meynert (nbm) in pdd has supported the efficacy of dbs in treating cognitive deterioration (freund et al., ) (table ). improvements in auditory verbal learning and memory test (avlt) (lezak et al., ) and other tests of cognitive functions have been reported (table ). a case report has reported minor improvement in beck depression inventory (bdi-ii) scores in a pdd patient following dbs of both stn and nbm (freund et al., ). whilst the efficacy of dbs for motor symptoms of pd is well established (baizabal-carvallo and alonso-juarez, ), there is less evidence for its effect in lbd specifically. a case series has reported motor benefits of dbs in lbd. improvements in updrs motor scores were observed following bilateral stn dbs. however, motor improvements lasted only - years in four individuals with lbd (kim et al., ) (see sdc- ). efficacy of rtms an uncontrolled study evaluating the efficacy of rtms to treat depressive symptoms in people with lbd has reported statistically significant reduction of hdrs scores (p< . ) following rtms (takahashi et al., ). the study has reported reduction of hdrs scores from . (sd= . ) before the intervention to . (sd= . ) after the intervention (table ). the efficacy of rtms in treating other symptoms of lbd has not been evaluated systematically so far (see sdc- ). efficacy of tdcs evidence supporting efficacy of tdcs in ameliorating cognitive symptoms of lbd comes from an uncontrolled study in which patients underwent stimulation of the left dorsolateral prefrontal cortex (table ). performance of attention and visuoperceptual tasks was assessed before and after treatment, with percentage of correct answers and the mean reaction time for digit vigilance being seen to improve significantly (table ). however, changes in visuoperceptual task performance were not statistically significant (elder et al., ). there has not been any study evaluating the efficacy of tdcs in managing non-cognitive symptoms of lbd (see sdc- ). efficacy of physical exercise physical exercise is the most studied psychosocial intervention in people with lbd. evidence supporting the benefits of exercise on cognition in pdd comes from a case report presenting an eight-week program of stationary cycling. improvements in executive functions were observed using moca and pd cognitive rating scale (pagonabarraga et al., ). exercise has been reported to increase mood and cognition (updrs part i) scores, and to reduce the time needed to complete color trails tests and (messinis et al., ; tabak et al., ) (table ). of all non-pharmacological interventions for motor symptoms of lbd, exercise- based interventions have the best available evidence supporting their efficacy. however, there has not been any trial exclusively recruiting people with lbd. a subset of pdd patients (n= ) in a rct, where participants undergoing the high intensity functional exercises program (littbrand et al., ) were compared with a light activity control, has provided evidence for minor improvements in sit-to-stand function and habitual and maximal gait speed. exercise may improve balance, measured by the berg balance scale (inskip et al., ; telenius et al., ) (see sdc- ). other non-pharmacological interventions spaced retrieval memory training has been attempted as an intervention in pdd (n= ), though only one participant was able to successfully complete motor and motor-verbal tasks at final recall testing (hayden and camp, ). additionally, one case report observed amelioration of ‘mirror sign’ associated with lbd, following an environmental intervention (gil-ruiz et al., ). discussion this systematic review is the first to comprehensively assess the efficacy of all reported non-pharmacological interventions in people with lbd, and it conformed to the prisma guidelines (moher et al., ). table summarizes the best available evidence for the efficacy of non-pharmacological interventions in treating various symptoms of lbd. the best available evidence supporting efficacy of non-pharmacological interventions is not robust. currently available studies are small in scale. they often lack appropriate controls, and most of them have not accounted for potential confounding factors. because of the lack of data homogeneity, secondary to the varying interventions assessed, and low quality of available literature, we could not perform meta-analysis. however, this preliminary evidence, together with the limitations of currently available pharmacological interventions, indicate the need to consider potential non-pharmacological interventions while planning comprehensive clinical care of people with lbd, and to plan pertinent research in future. ect is a non-pharmacological intervention that is readily available to many specialist psychiatric services treating people with lbd. whilst ect has been associated with transient cognitive deficits in late-life depression, current evidence does not suggest long-term deleterious effects on cognition (kumar et al., ). furthermore, a systematic review of the effects of ect in pd and depression found depression improving in . % of patients, with % remaining free from cognitive decline (borisovskaya et al., ). extrapolating this evidence may support the safety of ect in people with lbd. however, only one of three studies assessing ect in lbd reported significant improvement in depression, and the study did not report post-ect cognitive test results (takahashi et al., ). though there has not been any study suggesting hastening of cognitive decline by ect in lbd, there is a need for studies investigating long-term cognitive effects of ect in people with lbd. considering the efficacy of ect in ameliorating severe depression and psychosis in older people with pd, ect may be a potential treatment option for people with lbd, especially those who do not tolerate pharmacological interventions, with severe neuropsychiatric symptoms leading to active risks to self and others. the need for large robust trials evaluating the efficacy of ect in treating such neuropsychiatric symptoms in lbd cannot be overemphasized. similarly, significant improvement of depressive symptoms in people with dlb following rtms has been reported, but the report did not mention their post-rtms cognitive functioning (takahashi et al., ). a recent meta-analysis has found rtms to be superior to sham-rtms in reducing depressive symptoms in people with pd, with antidepressant effects similar to that of selective serotonin reuptake inhibitors, and concurrent improvement in motor function (xie et al., ). another systematic review has found rtms to have no significant impact on cognition (lage et al., ). there has not been any double blind rct evaluating the efficacy and safety of rtms in reducing depressive symptoms in people with lbd, despite the need for such a trial. whilst attentional improvements have been reported in people with lbd following tdcs, it is important to note that removal of outliers could have influenced the results (elder et al., ). anodal tdcs over the prefrontal cortex has previously shown efficacy in improving executive functions in people with pd (boggio et al., ; cappon et al., ; pereira et al., ). hence, the efficacy of tdcs on executive functions of people with lbd requires further systematic investigation. dbs involves an invasive neurosurgical procedure, and is therefore not feasible in many psychiatric settings treating people with lbd. whilst dbs is used clinically for medication-refractory motor symptoms in pd, pdd is often considered a contraindication in dbs, partially due to the risk of postsurgical cognitive decline, particularly upon stn stimulation (massano and garrett, ). however, this systematic review identified four case reports reporting benefits of dbs in pdd. freund et al. suggest that cognitive improvements observed in their patient were due to the effects of stimulating residual cholinergic projections and cell bodies in nbm (freund et al., ). whilst it is not clear if nbm dbs alters progression of lbd, preclinical studies have suggested possible disease modifying mechanisms such as increased secretion of nerve growth factor (hotta et al., ) and enhanced neurogenesis (jeong et al., ). we came across two ongoing rcts (foltynie, ; godefroy et al., ) evaluating the efficacy of nbm dbs to treat cognitive symptoms of dlb. results of these trials have not been published so far. due to the nature of the intervention, difficulties in obtaining informed consent, and the likelihood of end-stage complications, it is important to consider on an individual basis whether dbs can be justified as a treatment option, particularly for those with moderate or severe lbd. several physical, cognitive, and quality of life outcome improvements have been reported in people with lbd receiving exercise-based interventions. post-intervention increase in gait speed of . m/s or more has been reported in four studies, and this exceeds reported moderately clinically significant change of . m/s in pd cohorts (hass et al., ). a large clinically important effect in updrs section ii scores following stationary cycling intervention has been reported (tabak et al., ). a m improvement in six- minute walk test indicates moderately clinically significant change in geriatric populations, and an m improvement has been reported in a dlb patient following an exercise-based intervention (dawley, ; inskip et al., ; steffen and seney, ). there is currently level evidence to support the efficacy of exercise-based interventions to improve cognition, activities of daily living, motor symptoms, and depressive symptoms in people with lbd. although the prevailing evidence is not robust, practicability, potential benefits, and minimal risk for serious adverse effects indicate the need to include exercise-based interventions in the comprehensive clinical care of people with lbd. the importance of further research on this topic cannot be overemphasized. efficacy of other psychosocial interventions including psychoeducation and carer-based interventions has not been systematically investigated in lbd, and there is urgent need to design pertinent trials. studies evaluating non-pharmacological interventions for lbd are few, and they do not provide high-level evidence. apart from the evidence supporting the use of acetylcholinesterase inhibitors for the management of cognitive symptoms of lbd, high- level evidence for the efficacy of available pharmacological interventions in people with lbd are also sparse (stinton et al., ). considering the magnitude of burden on people with lbd, and on their caregivers, there is a clinical need to formulate individualized comprehensive care plans including both pharmacological and non-pharmacological interventions. there is an urgent need to expand pertinent evidence base. among the full- text articles that were identified, ( . %) were considered ineligible because of their exclusion of or failure to control for pdd in pd cohorts, or for lbd in dementia cohorts. it is high time to reconsider the eligibility criteria excluding people with lbd, and to design trials specifically investigating people with lbd. non-pharmacological intervention trials deal with unique methodological challenges (boutron et al., ). special attention should be given to standardizing different components of the intervention, tailoring the intervention for the needs of individual participants, describing the expertise of intervention providers, and the choice of an appropriate control group. non-pharmacological interventions that have shown promise in the management of pd may be investigated in people with lbd (hindle et al., ). ultimately, robust complex intervention trials evaluating the efficacy of combined pharmacological and non-pharmacological interventions are needed to develop comprehensive clinical guidelines for the management of people with lbd. conflict of interest declaration all authors except prof. dag aarsland do not have any competing interests to declare. prof. aarsland has received research support and/or honoraria from astra-zeneca, h. lundbeck, novartis pharmaceuticals and ge health, and serves as paid consultant for h. lundbeck, eisai, and axovant. description of authors’ roles hamilton morrin and anto p. rajkumar conceived this study, and wrote the protocol for the systematic review. hamilton morrin, ton fang, and donald servant carried out the systematic review including the quality assessment of identified studies. hamilton morrin wrote the initial draft of the manuscript. all authors were involved in the critical revisions of the manuscript. acknowledgements this research was supported by the student selected components (ssc) program of king’s college london, london, uk references aarsland, d., zaccai, j. and brayne, c. 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( . ) nr non-specified medication for parkinson's community loher et al., m pdd part iii (on), (off) carbidopa/levodopa; paroxetine community rasmussen et al., . ( . ) m, f lbd . ( . ) nr various antidepressants; antipsychotics; mood stabilisers; donepezil in ; carbidopa/levodopa in . case : community fujiwara et al., f dlb nr carbidopa/levodopa; cabergoline; quetiapine community takahashi et al., (ect) . ( . ) m, f possible dlb, probable dlb nr nr at least antidepressants; lithium carbonate; sodium valproate (withdrawn prior to ect) nr takahashi et al., (rtms) . ( . ) m, f suspected dlb, probable dlb nr nr nr nr freund et al., ; barnikol et al., m pdd cdt: ; avltsum: nr dopaminergic medication nr rochester et al., . ( . ) m pdd ( . ) part iii, ( . ) nr community data given as mean or individual values where appropriate. figures rounded to one decimal place. note that demographic data from telenius et al. was unavailable for the four pdd participants and thus was acquired from a systematic review which had obtained results directly from the authors (inskip et al., ). avlt–auditory verbal learning and memory test; cdt–clock drawing task; cog- cognitive assessment; dlb–dementia with lewy bodies; drs–mattis dementia rating scale; ect–electroconvulsive therapy; f- women; m- men; mci–mild cognitive impairment; mmse–mini-mental state examination score; moca–montreal cognitive assessment; nr–not reported; pdd– parkinson’s disease dementia; rtms–repetitive transcranial magnetic stimulation; updrs=unified parkinson’s disease rating scale (part i– mood and cognition, part ii–activities of daily living, part iii–motor). gil-ruiz et al., f probable lbd nr donepezil; escitalopram nursing home ciro et al., f dlb nr citalopram; rivastigmine; rasagiline community tabak et al., m pdd moca: part i: ; part ii: carbidopa/levodopa community dawley, m dlb nr nr carbidopa/levodopa; antidepressant; antipsychotic community telenius et al., . ( . ) m, f pdd ( . ) nr nr nursing home elder et al., . ( . ) m, f dlb . ( . ); moca: . ( . ) part iii . ( . ) on cholinesterase inhibitors; all on anti- parkinsonian medication nr elder et al., . ( . ) m, f pdd . ( . ); moca: . ( . ) part iii . ( . ) on antidepressants; all on anti-parkinsonian medication nr kim et al., . ( . ) m, f pdd . ( . ) part iii . ( . ) (on), . ( . ) (off) none on cholinesterase inhibitors; all on levodopa community table . reported outcomes following electroconvulsive therapy, repetitive transcranial magnetic stimulation and transcranial direct current stimulation in people with lewy body dementia (n= ) citation measure/feature baseline outcome ect rasmussen et al., case mmse (/ ) - hdrs nr (‟severe depression”) - visual hallucinations intense and persistent reduction in intensity case mmse (/ ) hdrs case mmse (/ ) visual hallucinations present markedly reduced for weeks then recurred case mmse (/ ) nr - hdrs nr (‟severe depression”) - case mmse (/ ) hdrs (mood reportedly improved) case depression present temporarily improved delusion prominent temporarily reduced case depression (/ ) present acute improvement fujiwara et al., clinical features insomnia, mild depression, hallucinations and delusions alleviation of depressed mood, hallucinations and delusions takahashi et al., hdrs . ( . ) . ( . ) rtms takahashi et al., hdrs . ( . ) . ( . ) tdcs elder et al., choice reaction time - correct answers (%) . ( . ) . ( . ) digit vigilance - mean reaction time (ms) . . figures rounded to one decimal place. ect–electroconvulsive therapy; hdrs- hamilton depression rating scale; mmse–mini-mental state examination; nr–not reported; rtms– repetitive transcranial magnetic stimulation; tdcs–transcranial direct current stimulation. table . outcomes following deep brain stimulation in people with lewy body dementia at time points relative to electrode implantation (n= ) citation time of recording adl (updrs part ii) motor (updrs part iii) mmse off on off on loher et al., preoperative months postoperative year postoperative kim et al., preoperative nr nr . ( . ) . ( . ) . ( . ) year postoperative nr nr . ( . ) . ( . ) a . ( . ) b citation time of recording avltsum, (no. of words) cdt (points) tmt-a (minutes: seconds) vflsum (no. of words) bdi-ii (points) freund et al., ; barnikol et al., preoperative : bilateral stimulation of stn, weeks postoperative : bilateral stimulation of stn + nbm, - weeks postoperative (mean of tests) . : . isolated stimulation of stn + sham stimulation of nbm, weeks postoperative : bilateral stimulation of stn + nbm, - weeks postoperative (mean of tests) . : . . numbers within brackets indicate standard deviations. figure rounded to one decimal place. adl–activities of daily living; avlt–auditory verbal learning and memory test; bdi-ii–beck’s depression inventory; cdt–clock drawing test; dbs–deep brain stimulation; mmse–mini- mental state examination; nbm–nucleus basalis of meynert; nr–not reported; on/off–on/off phase of levodopa-related motor fluctuation; stn–subthalamic nucleus; tmt-a–trail making test part a; updrs–unified parkinson’s disease rating scale; vfl–verbal fluency. aaverage of four patients as ‘case ’ ceased medication following surgery; baverage of four patients as mmse was not measured in ‘case ’ post-intervention. note that for results from kim et al., , ‘case ’ was too dysarthric for assessment at months so data from months postoperative have been used instead of months. table : reported outcomes in studies assessing the impact of physical activity in people with lewy body dementia (n= ) citation measure exercise control baseline outcome baseline outcome rochester et al,. habitual gait speed (m/s) . ( . ) . ( . ) na na dual task gait speed (m/s) . ( . ) . ( . ) na na single task cadence (steps/minute) . ( . ) . ( . ) na na ciro et al., single chair stand - copm performance na na single chair stand - copm satisfaction na na tabak et al., minute walk test - single task (m) . . na na minute walk test - dual task (m) . . na na functional gait assessment (/ ) na na moca (/ ) na na pdcrs (/ ) na na color trails test (s) na na color trails test (s) na na updrs i (/ ) na na updrs ii (/ ) na na pdq- (/ ) na na dawley s sit-to-stand na na habitual gait speed - . m walk test (m/s) . . na na minute walk test - single task (m) . . na na balance - minibestest (/ ) na na balance - timed up & go test (s) . . na na g-code: mobility (% impairment) na na telenius et al., s sit-to-stand . ( . ) ( . ) . ( . ) ( . ) habitual gait speed – m walk test (m/s) . ( . ) . ( . ) . ( . ) . ( . ) maximal gait speed – m walk test (m/s) . ( . ) . ( . ) . ( . ) . ( . ) berg balance scale (/ ) a a . ( . ) . ( . ) activities of daily living –barthel index (/ ) ( ) b . ( . ) . ( . ) figures rounded to dp. copm–canadian occupational performance measure; moca–montreal cognitive assessment; na–not applicable; pdcrs–parkinson’s disease cognitive rating scale; pdq- –parkinson’s disease questionnaire- ; updrs–unified parkinson’s disease rating scale (i–mood & cognition, ii–activities of daily living). aresult only reported for first intervention participant; bresult only reported for second intervention participant. table : oxford centre for evidence-based medicine levels of evidence for the efficacy of non-pharmacological interventions for various symptoms of lewy body dementia symptoms non- pharmacological intervention highest level of evidence citation for highest level of evidence cognitive dbs freund, et al., tdcs elder, et al., exercise tabak, et al., activities of daily living dbs loher, et al., exercise tabak, et al., neuropsychiatric depression dbs freund, et al., ect takahashi, et al., rtms takahashi, et al., exercise tabak, et al., hallucinations ect rasmussen, et al., delusions ect fujiwara, et al., motor dbs kim, et al., exercise telenius, et al., ‘motor’ refers to parkinsonian motor symptoms such as bradykinesia and resting tremor. dbs–deep brain stimulation; ect–electroconvulsive therapy; rtms–repetitive transcranial magnetic stimulation; tdcs–transcranial direct current stimulation; level of evidence - non-randomized controlled cohort/follow-up study; level of evidence - case-series, case- control studies, or historically controlled studies; level of evidence - mechanism-based reasoning jvme- . .- .. purdue conference on the human–animal bond the benefits of human–companion animal interaction: a review sandra b. barker g aaron r. wolen abstract this article provides a review of research published since on the benefits of human–companion animal interaction. studies focusing on the benefits of pet ownership are presented first, followed by research on the benefits of interacting with companion animals that are not owned by the subject (animal-assisted activities). while most of the published studies are descriptive and have been conducted with convenience samples, a promising number of controlled studies support the health benefits of interacting with companion animals. future research employing more rigorous designs and systematically building upon a clearly defined line of inquiry is needed to advance our knowledge of the benefits of human–companion animal interaction. key words: research review, human–companion animal interaction, animal-assisted activities, controlled trials, animal-assisted intervention, human–animal bonding introduction many articles have been published on the benefits of human–companion animal interaction and this review, while comprehensive, is by no means exhaustive. the review is the result of a comprehensive search of published research since (through june ) using the medline, psycinfo, and cinahl bibliographic databases. the following key words were used to retrieve articles assessing the benefits of human–animal interaction: animal bond; animal companions; animal-assisted therapy; canine visitation; companion animal; companion cat; dogs and health; human– animal; human–pet; pets and health; pet companionship; pet owners; pet ownership; pet therapy. dissertations and book chapters were omitted, as were articles published in journals that were not verified to be peer-reviewed in ulrich’s periodicals directory. articles published in a language other than english and those focusing on service/ assistance animals, police dogs, horses, non-companion animals (e.g., dolphins), or the death of a pet were also omitted. abstracts were then reviewed to select articles that involved some type of empirical design, thereby excluding literature reviews and anecdotal reports. the articles were reviewed and sorted into content categories by primary outcome and/or target subject (e.g., nursing-home residents, chil- dren, psychiatric patients). the authors then selected the categories that represented the most frequently investigated areas. these categories serve as the framework for this review. studies focusing on pet ownership are presented first, followed by those focusing on animal- assisted activities (aaa), defined as interventions involving interactions with animals that are not owned by the subjects in the study. pet ownership most studies of pet ownership are descriptive, with data collected primarily from interviews and surveys of convenience samples, thus making them difficult to com- pare beyond noting whether the results appear to support a commonly assessed outcome. this section will separately review studies of the physiological and psychosocial benefits of pet ownership. physiological benefits of pet ownership a landmark study by friedmann et al of decreased mortality in pet owners one year after discharge from a coronary care unit inspired further research into the potential cardiovascular (cv) and general health benefits of pet ownership. the results were mixed. a longitudinal study on patients participating in the cardiac arrhythmia suppression trial (cast) confirmed the results of the original friedmann trial, finding that pet ownership and social support predicted survival one year after a myocardial infarction. extending these studies, friedmann et al analyzed heart rate (hr) variability in a sample of cast participants with healed myocardial infarcts, with the results suggesting that altered cardiac autonomic modulation may be a possible mechanism of action of reduced mortality in pet owners compared with non- owners. several large australian studies have also researched pet ownership and cv health. one study used health screenings of , volunteers to compare the cv health of those who owned a pet versus those who did not. pet owners were found to have lower levels of cv risk factors than those without pets. however, a follow-up survey of over , community-based adults failed to show any cv benefit from pet ownership. these surveys differed substantially in their methodologies, which may explain the conflicting results: the former study involved self-selected participants and underrepresented pet owners compared to the australian population, while the latter survey involved a representa- tive sample randomly selected for inclusion in a long- itudinal health study. jvme ( ) � aavmc another large (n¼ , ) australian survey concluded that dog and cat owners were in better health than non-owners, based on either physician visits or medication use (but not both), translating into savings of $ million au$ in health care costs. those with a close bond to their pets had the additional benefits of less loneliness and a greater social support network. the german socio-economic panel survey of a nationally representative sample of approxi- mately , participants supports these findings. two surveys, conducted five years apart, showed the least physician visits among those who continuously owned a pet during the five year period, followed by those who acquired a pet during the period. looking at adherence to treatment as a health outcome, researchers have reported that pet ownership predicts adherence to cv rehabilitation, while numerous personality and psychosocial variables do not. pet owners in this sample of patients were far more likely to complete cardiac rehabilitation than those who did not own a pet. interviews with elderly medicare enrollees in a large, longitudinal study found that pet owners reported fewer visits to physicians over a one-year period and dogs appeared to serve as a buffer from the impact of stressful life events. in another elderly sample, pet attitudes and pet ownership were significant but weak predictors of main- taining improved levels of health and morale in a long- itudinal four-year study. in contrast, other descriptive studies have reported no significant difference between pet owners and those without pets in the use of health services; , morale, locus of control, social interaction, mental status, psychological symptoms, and physical abilities; use of daily medication or presence of medical problems; or multiple health variables, mortality, or healthy behaviors. one large-scale survey of australian seniors reported an association between caring for a pet and negative health outcomes. pachana et al attempted to identify factors contributing to such inconsistent results by analyzing a large, longitudinal health data set of , older australian women, and found that age, mental and physical health, living arrangements, and housing were all strongly related to pet ownership. confounding of outcomes by such demographic variables may have contributed to the inconsistencies in reported results. in addition, studies that rely on self-report of pet owners yield subjective results. headey has provided another possible explanation for these conflicting findings by differentiating between the social science and medical research methodologies used. he asserts that the survey-based methods used in social science research provide evidence of health benefits associated with pet ownership, whereas controlled clinical trials in medical research seek causal links between pet ownership and specific medical conditions. a number of experimental studies have focused on the effect of human–pet interaction on cv indicators, with mixed results. in a randomized, repeated-measures cross- over design, moody et al found no significant differences in systolic (sbp), diastolic blood pressure (dbp), or hr between hypertensive pet owners (with and without their pets present during testing) and those who did not own pets. similarly, a study examining the effects of petting one’s own dog versus an unfamiliar dog found that hr and bp were unaffected by the participant’s relationship with the animal, and hr only decreased during the control condition of quietly reading a book. in contrast, several studies that have included a cognitive stressor consistently found that pets reduce indicators of cv stress. early work on the subject by allen et al demonstrated this effect by randomly assigning female dog lovers to complete a mental task accompanied by either their pet dog, which produced little stress reactivity in skin conductance, bp, and hr, or by a close friend, which increased overall stress reactivity. in a more recent randomized controlled trial, allen et al randomly assigned hypertensive adults starting lisinopril (an angiotensin-converting enzyme [ace] inhibitor) to a group acquiring a dog or cat or to a wait-list control group for six months. the physiological response to stress (sbp, hr, and plasma renin activity) at home was found to be lower in those assigned to pet ownership compared with the control group without pet ownership. in addition, pet owners performed higher in mental tasks. lisinopril reduced only resting bp. other studies that have included a mental stress task have also reported positive findings. a related study comparing married couples with and without pets found that pet owners had decreased resting bp and hr, and a lower reactivity in sbp and hr during a mental stress task, with faster return to baseline. a smaller study reported reduced bp, but not hr, when petting a dog while reading aloud. these experimental studies collectively support a beneficial effect of pet own- ership on cv stress reactivity that warrants further investigation. the possibility of an association between pet ownership and cv health has prompted other researchers to investigate whether owning a pet increases physical activity. one observational study found that dog owners walked more frequently, but not for longer, than non-owners, while a survey-based study found the opposite: dog owners walked for longer, but not more frequently, than non-owners, and dog owners were less likely to meet recommended levels of physical activity. a comparison of , medicare recipi- ents in the health abc study found no difference in the frequency of walking for exercise or of any physical activity in those with and without pets; although older dog owners engaged in more physical activity overall. in contrast, a large-scale, one-year longitudinal study of community- based seniors in canada found pet owners to be younger and more physically active than those without pets. in this age- and sex-stratified random sample, pet ownership significantly modified the relationship between social support and change in psychological well-being over the study period. while age may account for the increased physical activity, those without pets were noted to engage in comparatively fewer activities of daily living. conflicting findings on physical activity may be explained by confounding variables that have not been controlled for in these studies. for example, one survey found that dog size mediated the frequency of physical activity, with owners of medium- and large-sized dogs walking more often. a sense of responsibility for the health and well- being of one’s dog was also found to mediate the relation- ship between physical activity and dog ownership. these studies emphasize the importance of investigating mediating variables that may play a role in the physiological benefits of pet ownership. jvme ( ) � aavmc psychosocial benefits of pet ownership several descriptive studies have documented the closeness between people and their pets, including dog owners who were found to be as emotionally close to their dogs as to their closest family member, pet owners with hiv or aids who likened their relationship with their pets to that with their family members, and owners whose cats provided a source of emotional support. similarly, a retrospective study reported that survivors of sexual abuse rated their pets as more supportive during childhood than humans. a number of surveys have assessed the association between pet ownership and depression. a large internet survey found that unmarried female pet owners reported the fewest depressive symptoms, while unmarried male pet owners report the most. an equally large survey (n¼ , ) of australian seniors reported higher levels of depression in pet owners, while a smaller group of elderly patients sampled in a physician’s office revealed no significant differences in depression, happiness, life satisfaction, hobbies, and interests between those with and without pets. furthermore, no association was found between pet ownership and depression in a large survey of gay and bisexual men (n¼ , ) participating in the multicenter aids cohort study. several descriptive studies have examined the relationship between pet ownership and mood in people living alone. in women living alone, pets have been associated with increased morale and decreased loneliness. a more recent study found that cats alleviated negative moods equally as well as a human partner, but that only a human partner strengthened positive moods. similarly, an obser- vational study has concluded that cats seem to help compensate for the depressive moods of single adults. these descriptive studies suggest that pet ownership may be associated with some benefits to mood in select samples. the psychological effect of pets on children has received some attention in the literature, with mostly positive outcomes reported. descriptive studies have reported that pets increase autonomy, self-concept, and self-esteem in some elementary school children. positive relationships have also been found between parents’ perceived compe- tence of their children and pet attachment in kindergarten children, self-reported empathy and pet attachment in kindergarten boys, and attachment and parents’ perceived empathy in fifth-grade children. other survey research with school-age children has reported that children who prefer both dogs and cats have higher levels of empathy than those who prefer one or the other, and children who are highly attached to their pets are more empathic than those who are less attached. croatian researchers have also found a positive relationship between pet attachment and empathy, increased social orientation, and a positive family climate in school-age children. these descriptive studies of convenience samples call attention to the need for more rigorous experimental studies of the psychosocial effects of pet ownership on children and adults. the validity of most of the current studies is threatened by the reliance on convenience samples and the presence of uncontrolled extraneous variables. animal-assisted activities/therapy the authors recognize the differences between animal- assisted therapy (aat)—the purposeful incorporation of therapy animals into an individual’s treatment plan—and the more general aaa, such as pet visitation. however, published studies do not consistently differentiate between aat and aaa. therefore, to minimize confusion and for ease of reading, the more general term aaa will be used to encompass all activities involving a companion animal that is not owned by the recipient of services. this section presents research focusing on cv outcomes, followed by outcomes in clinical samples, with a final section on aaa and children. cardiovascular benefits a number of studies have investigated the effect of aaa on cv response and, like the pet ownership studies already presented, report mixed results. one reason may be that the studies vary greatly in terms of samples, aaa interven- tions, and study conditions. while several studies have incorporated mental stressors into their experimental designs, the large variety of mental stressors employed may also contribute to the inconsistent results. a few studies have reported no difference in bp and hr associated with dog presence, , while most have reported reductions in bp associated with dog presence, , tactile interaction with a dog, and, in one study, the presence of a pet goat as well. studies comparing aaa with quiet reading have found greater bp reductions in the quiet reading condi- tion. , however, petting one’s own dog, as opposed to petting an unfamiliar dog, produced similar declines in bp. using hr variability as a surrogate index of autonomic activity, japanese researchers have used a repeated- measures crossover design to assess seniors walking in a park either alone or with a research dog. their results demonstrated that the dog’s presence in the park, as well as at home, increased parasympathetic neural activity, which is generally associated with stress reduction. similar to the results of studies on pet ownership studies on cv stress reactivity, the inclusion of a mental stressor in studies of aaa appears to contribute to positive findings, lending further support to the potential benefits of interact- ing with companion animals on stress reactivity and the importance of conducting research grounded in theoretical models, namely stress models. benefits for individuals with psychiatric disorders several experimental studies have reported positive effects of aaa with therapy dogs on hospitalized psychiatric patients, including reductions in fear and anxiety, , increased attendance at occupational therapy, and more pro-social behaviors. comparing recently discharged psychiatric patients in two matched adult homes, research- ers found improvements in social interaction, psychosocial function, life satisfaction, mental function, depression, social competence, and psychological well-being in those residing in the home receiving six weekly puppy visits. while no differences were detected in functioning and treatment response in geriatric psychiatry patients who were randomly assigned to aaa with therapy dogs or to an exercise group, decreased irritability was noted in women with dementia in both groups. in one study of depressed college students, no significant differences were found in jvme ( ) � aavmc depression levels after seven weeks of group psychotherapy with and without aaa. unlike previous studies with dogs, an investigation on the effect of aquarium presence on psychiatric patients’ depression, fear, and frustration revealed no benefit, although a trend toward reduced anxiety was observed. other studies have focused specifically on aaa in patients diagnosed with schizophrenia. although sample sizes were small, studies have reported improvements in increased hedonic tone and use of leisure time, involvement in domestic and health activities, nonverbal communica- tion, and social functioning with aaa. collectively, these studies provide some evidence of improved mood and increased social behavior associated with aaa in those with psychiatric disorders. such preliminary results warrant further investigation. a few studies have targeted samples of health care pro- fessionals. researchers in one descriptive study found that therapists who incorporate therapy dogs into their psy- chotherapy practices perceive this approach as an effective technique that can benefit clients with a wide range of clinical problems and in various age groups and practice settings. in another study, therapists who had a dog present were rated more favorably by college students than those without a dog. other researchers have looked at the effect of aaa on measures of psychoneuroimmunology in health care professionals in a repeated-measures crossover study. they found a significant decline in both serum and salivary cortisol levels that was detectable after minutes following as little as five minutes with a therapy dog. no significant effects were found on immune function. benefits of aaa for nursing-home residents and seniors with dementia studies addressing the benefits of aaa for nursing-home residents have primarily assessed outcomes of mood, daily functioning, and social interactions using various measures and designs. an anthropological study concluded that residents perceive visitors with pets as facilitating a sense of domesticity. a randomized, pre-/post-intervention, control group study comparing the effects of aaa and human visits reported no differences on depression, but aaa improved mood as measured by the profile of mood states (poms). a longitudinal australian study compar- ing a resident dog, visiting dog, and visiting researcher reported improved poms scores in the resident-dog group over the other groups for tension, confusion, and depression, with both dog groups showing reduced fatigue. others have found reduced depression in nursing-home residents provided with a companion bird for days. while no association was noted between the presence of an aviary and reduced depression for elderly males in a health care day program, reduced depression was found in those who utilized the aviary. using a wide range of measures to compare the effects of aaa with usual nursing-home activities in torino, italy, researchers found aaa to be associated with bp reductions, but not with measures of illness, depression, or daily activities, or with mental or nutritional status. other studies with nursing-home residents have reported positive outcomes associated with aaa. in one study, nursing-home residents who were randomly assigned to one or three weekly individual aaa sessions over six weeks were found to have decreased loneliness with one aaa session a week. in a follow-up study over the same time frame, the same investigators compared aaa in an individual versus group format, and found reduced loneliness following individual aaa with no benefit in the group format. aaa has been found to enhance social behavior in several studies of loneliness among nursing-home residents. – increases in interactive behavior were also found six weeks following the introduction of a resident dog in another study; however, residents’ behavior returned to baseline after weeks. a within-subjects observational study of nursing-home residents visited by people alone, pets alone, and people and pets, found that all conditions were associated with increased smiling and alertness, but the greatest number of positive behaviors was associated with close proximity to the person alone. focusing on geriatric patients with cognitive impairments, including dementia and alzheimer ’s disease, researchers have reported several benefits associated with aaa with dogs, including reduced hr and unit noise, reduced agitation and increased social interaction, increased social behaviors, , reduced use of physical restraints, increased orientation to time, and facilitated goal achievement. aaa with dogs and cats has also been reported to decrease aggressiveness, anxiety, and phobias in elderly patients with alzheimer ’s disease, and to reduce caregiver burden. patients with alzheimer ’s disease who ate in front of an aquarium daily for eight weeks were found to have increased nutritional intake and weight gain, while another study found the presence of a companion canary compared with having a plant improved a range of psychiatric symptoms and perceived quality of life after three months. not all studies have reported benefits of aaa for those with cognitive impairments. a single aaa experience had no effect on agitation, socialization, or dementia in one study of residents in extended-care facilities, and no effect on mental status, depression, self maintenance, or irritability was found after four days of aaa in eight patients with dementia. collectively, however, these studies support the association of beneficial effects with aaa for patients with alzheimer ’s disease or dementia, and call for more rigorous research with this population. while not affecting cognitive status, aaa may provide some benefits to mood, loneliness, socialization, and problem behaviors. benefits of aaa for children most studies of aaa with children have focused on clinical populations. however, one crossover study of native american preschool children who were randomly assigned to brief, bi-weekly aaa sessions with various pets showed no social-skills benefit from aaa, but decreased absences during the first six weeks of the program. other researchers have reported that the presence of a friendly dog reduced bp in children who were reading aloud or at rest. a number of studies have evaluated the benefits of aaa for children in health care settings, with mixed results. descriptive studies report satisfied parents and staff. however, a dog’s presence during a dental procedure did not reduce school-age children’s behavioral distress or jvme ( ) � aavmc physiological arousal. one study of young children undergoing a physical examination in a pediatric clinic found no difference on physiological measures of arousal in children who were randomly assigned to the presence of a dog, although less behavioral distress was reported. in contrast, positive outcomes were reported in a within- subjects study of a dog’s presence during the routine physical examination of preschool children. the presence of a dog was associated with reduced sbp, mean arterial pressure, hr, and distress. focusing on pain perception in post-operative children, another study reported that aaa was associated with less perceived physical and emotional pain. several small studies have explored the effects of aaa on children with developmental disorders. one observational study of autistic children noted fewer autistic and more socially appropriate behaviors during therapy with a dog; however, these gains declined after one month of follow- up. using llamas, dogs, and rabbits in occupational therapy with autistic children, researchers reported an increased use of language and social interaction with aaa compared to with traditional occupational therapy. another study measuring social outcomes was conducted with children with pervasive developmental disorders. these children were rated as being more aware of their social environment, more focused, and more playful during aaa with a dog. other studies involving very small samples of patients with a variety of developmental and emotional disorders have reported various benefits of aaa, including more sustained focus; emotional stability, improved attitudes toward school, and improved learning in responsibility, respect, and empathy; progress on individual goals; and sociability, vocal expression, and eye contact. one explanation for the benefits found in children with special needs is provided by katcher in his rationale for including aaa in the form of an aat/education (aat/e) program for children with attention deficit/hyperactivity disorder (adhd) and conduct disorder. katcher con- tends that the innate tendency to pay attention to nature and animals may increase a child’s ability to inhibit responses, a critical deficit for children with adhd and other disorders. however, as katcher found in his well-designed evaluation of the aat/e program at devereux in west chester, pa, context is an important variable since positive behavioral outcomes noted in the aat/e context did not generalize to the regular classroom. most of the published aaa studies are descriptive and based on convenience samples. while inconsistencies in results abound, there seems to be some agreement on an association between aaa and improvements in mood for certain populations. support for a positive impact of aaa on depression comes from a recent meta-analysis of five experimental studies that reported medium and significant aggregate effect sizes indicating that aaa is associated with fewer depressive symptoms. the studies included in this meta-analysis met criteria for methodological rigor, and the results provide important evidence for a benefit of aaa in those with depressive symptoms. in addition, aaa shows potential for improving cv reactivity to stress and for improving mood and social behaviors in nursing-home and psychiatric patients, including those with alzheimer ’s disease and other dementias. discussion one of the earliest reviews of research on the benefits of human–companion animal interaction was conducted in by beck and katcher. they noted the preponderance of descriptive studies and identified only six experimental studies published at that time, which reported little or no benefit of pets. the current review reflects considerable progress since that time, with the review of studies published in peer-reviewed journals. like the review, most of the research continues to be descriptive and, while providing valuable information for generating research hypotheses, lacks the necessary controls to enable us to determine whether benefits actually result from pet owner- ship or aaa. however, a number of strong studies contributing to the field have been presented, including large surveys of nationally or regionally representative samples. a number of these studies used existing databases (e.g., medicare) or included pet-related variables in non- pet-focused studies (e.g. cast, health abc study). the series of studies by friedmann et al investigating pet ownership and mortality have contributed significantly to the field, – as have the large australian surveys on pet ownership and cv risk factors and/or health conducted by anderson et al, parslow et al, , pachana et al, schofield et al, and headey et al. , in north america, large-scale studies on the health benefits of pet ownership by thorpe et al, raina et al, brown and rhodes, siegel et al, , and tucker et al have added to our knowledge of the benefits for varied populations. as evident in this review, considerably more experimental studies have been published since the six identified by beck and katcher in . while the majority have been conducted on relatively small numbers of convenience samples, several are noteworthy for their methodologies: banks and banks’ replication of their earlier pre-/post- intervention, control-group study, again finding decreased loneliness in long-term care residents who were randomly assigned to individual aaa sessions for six weeks, with no benefit for aaa delivered in a group setting; , barker et al’s partial replication of a pre-/post-intervention, cross- over design of aaa with electroconvulsive therapy patients finding significant reductions in fear after aaa with a therapy dog but not in the presence of an aquarium; , allen et al’s random assignment of hypertensive stock brokers beginning ace-inhibitor therapy to pet ownership with a wait-list control group, finding pet ownership was associated with reduced cv reactivity and improved mental task performance; columbo et al’s pre-/post-intervention, control-group study involving the random assignment of cognitively impaired nursing-home residents to three months with a plant, canary, or control, and reporting improved scores on measures of psychopathological status and quality of life for the canary group; and edwards and beck’s time-series study finding increased caloric intake, increased weight, and less need for nutritional supplements in dementia patients who ate their meals in front of an aquarium. jvme ( ) � aavmc finally, a few studies have begun to look at physiological mechanisms that may explain the benefits of interacting with companion animals. both allen et al – and friedmann et al , have looked at cv mechanisms, while barker et al have investigated psychoneuroimmunological mechanisms. this review has summarized many studies on the benefits of human–companion animal interaction. both clinical and non-clinical samples attest to the perceived benefits of pet ownership and aaa, and the number of controlled studies supporting such claims is growing. most have measured short-term outcomes, and studies of the long-term effects of human–animal interactions are needed to determine whether the short-term benefits are maintained over time. the studies published so far vary greatly in subject samples, interventions, outcomes, procedures, and instruments, making it difficult to make comparisons and draw conclu- sions. indeed, categorizing the published studies for this review represented a challenge, with few lines of research focusing and building on a common area of inquiry. as already noted, a number of these studies reported conflicting findings, which served to clarify the important distinction between research methodologies that limit their interpretation of results to associations and those that establish causation, designs that limit generalization to specific populations (e.g., males, the elderly) and/or locations (e.g., psychiatric hospitals, nursing homes), and the need to identify and control for factors that might explain the results. it is clear that more rigorous research, grounded in theoretical models, is needed to support descriptive studies claiming benefits of human–animal interactions. randomization and control conditions are needed, as are clear descriptions of interventions to enable replication studies. more consistent use of standardized instruments that have been shown to be sensitive to the effects of human–animal interactions will also improve our ability to compare study results and draw firmer conclusions. for evidence-based benefits of pet ownership or aaa, exploration of the underlying physiological mechanisms of action is needed. despite these factors, a few pockets of evidence do exist and appear to be growing. pets appear to buffer the impact of stress on some owners, and may be associated with other health attributes such as increased physical activity for some owner groups. seniors in nursing homes and those with alzheimer ’s disease or dementia appear to benefit from both pet ownership and aaa in the areas of mood, loneliness, social behaviors, and caloric intake. similarly, some psychiatric populations also appear to benefit from aaa in terms of improved mood and social behaviors. finally, there is emerging evidence of the possible benefits of pet attachment for children, particularly with regards to empathy, and of aaa for 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canine visitation (pet) therapy: pilot data on decreases in child pain perception. j holist nurs ( ): – , . redefer la, goodman jf. brief report: pet-facilitated therapy with autistic children. j autism dev disord : – , . sams mj, fortney ev, willenbring s. occupational therapy incorporating animals for children with autism: a pilot investigation. am j occup ther : – , . martin f, farnum j. animal-assisted therapy for children with pervasive developmental disorders. west j nurs res : – , . limond ja, bradshaw jws, cormack kfm. behavior of children with learning disabilities interacting with a therapy dog. anthrozoös : – , . anderson kl, olson mr. the value of a dog in a classroom of children with severe emotional disorders. anthrozoös : – , . granger bp, kogan lr, fitchett ja, helmer ka. a human–animal intervention team approach to animal- assisted therapy. anthrozoös : – , . kogan lr, granger bp, fitchett ja, helmer ka, young kj. the human–animal team approach for children with emotional disorders: two case studies. child youth care forum ( ): – , . katcher ah, wilkins gg. the centaur ’s lessons: therapeutic education through care of animals and nature study. in fine ah, ed. handbook on animal-assisted therapy: theoretical foundations and guidelines for practice. san diego: academic press, : – . souter ma, miller md. do animal-assisted activities effectively treat depression? a meta-analysis. anthrozoös : – , . beck am, katcher ah. a new look at pet-facilitated therapy. j am vet med assoc : – , . siegel jm. stressful life events and use of physician services among the elderly: the moderating role of pet ownership. j pers soc psychol : – , . tucker js, friedman hs, tsai cm, martin lr. playing with pets and longevity among older people. psychol aging ( ): – , . author information sandra b. barker, phd, is a professor of psychiatry and director of the school of medicine center for human–animal interaction, virginia commonwealth university, p.o. box , richmond, va usa. she is also adjunct professor of small animal clinical sciences at virginia-maryland regional college of veterinary medicine. e-mail: sbarker@mcvh-vcu.edu. aaron r. wolen is a graduate of the university of iowa with a bs in psychology and a minor in biology. he is currently pursuing a phd in human genetics at virginia commonwealth university’s school of medicine, p.o. box , richmond, va usa, where he completed a research assistantship with the center for human–animal interaction. jvme ( ) � aavmc [pdf] alzheimer's association dementia care practice recommendations. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /geront/gnx corpus id: alzheimer's association dementia care practice recommendations. @article{fazio alzheimersad, title={alzheimer's association dementia care practice recommendations.}, author={s. fazio and d. pace and k. maslow and s. zimmerman and beth kallmyer}, journal={the gerontologist}, year={ }, volume={ suppl_ }, pages={ s -s } } 	s. fazio, d. pace, + authors beth kallmyer 	published 	medicine 	the gerontologist background and objectives: person-centered care is a philosophy of care built around the needs of the individual and contingent upon knowing the unique individual through an interpersonal relationship. this review article outlines the history, components, and impact of person-centered care practices. research design and methods: through literature review, published articles on person-centered measures and outcomes were examined. results: the history of person-centered care was described, core… expand view on pubmed academic.oup.com save to library create alert cite launch research feed share this paper citationshighly influential citations background citations results citations view all figures, tables, and topics from this paper 	 figure 	 table 	 figure 	outlines (document) paper mentions blog post alzheimer’s association® dementia care practice recommendations information for practice february blog post alzheimer’s association dementia care practice recommendations information for practice january news article alzheimer's association launches comprehensive dementia care practice recommendations pr newswire january news article alzheimer's association launches comprehensive dementia care practice recommendations minyanville: finance january citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency alzheimer's association towards guidelines for dementia care practice: recommendations with emphasis on high-quality, person-centered care in long-term and community-based care settings 	s. fazio, d. pace, beth kallmyer, joanne pike 	medicine 	alzheimer's & dementia 	 	 save alert research feed what is really needed to provide effective, person-centered care for behavioral expressions of dementia? guidance from the alzheimer's association dementia care provider roundtable. 	s. fazio, s. zimmerman, + authors joanne pike 	medicine 	journal of the american medical directors association 	 	 save alert research feed reconsidering frameworks of alzheimer's dementia when assessing psychosocial outcomes 	j. gaugler, l. bain, + authors s. zimmerman 	psychology, medicine 	alzheimer's & dementia 	 	 	view excerpt, cites background save alert research feed a dyadic perspective on assessment in alzheimer's dementia: supporting both care partners across the disease continuum 	s. orsulic-jeras, c. whitlatch, s. powers, j. johnson 	psychology, medicine 	alzheimer's & dementia 	 save alert research feed transitioning to long-term care: family caregiver experiences of dementia, communities, and counseling 	rachel zmora, t. statz, + authors j. gaugler 	medicine 	journal of aging and health 	 save alert research feed advancing research on care needs and supportive approaches for persons with dementia: recommendations and rationale. 	a. kolanowski, r. fortinsky, + authors s. zimmerman 	medicine 	journal of the american medical directors association 	 	 	 save alert research feed implementing a cognitive impairment care planning toolkit to enhance dementia care: a quality improvement project 	raquel garcia-priestly 	medicine 	 	highly influenced 	view excerpts, cites background save alert research feed advanced care planning: an exploratory study of community-based mental health practitioners’ views and experiences of acp in practice with people with dementia 	j. manthorpe, k. goodwin 	psychology 	 	highly influenced 	pdf 	view excerpts, cites background save alert research feed when death with dementia is “a memory seared in my brain”: caregivers’ recommendations to health care professionals 	cynthia a hovland 	medicine 	journal of applied gerontology : 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and meta-analysis 	s. kim, myonghwa park 	medicine 	clinical interventions in aging 	 	 	pdf save alert research feed join the revolution: how montessori for aging and dementia can change long-term care culture. 	m. bourgeois, j. brush, gail elliot, a. kelly 	psychology, medicine 	seminars in speech and language 	 	 save alert research feed psychosocial interventions for dementia patients in long-term care 	m. vernooij-dassen, e. vasse, s. zuidema, j. cohen-mansfield, w. moyle 	medicine 	international psychogeriatrics 	 	 	pdf save alert research feed partners in dementia care: a care coordination intervention for individuals with dementia and their family caregivers. 	k. judge, d. bass, + authors m. kunik 	medicine 	the gerontologist 	 	 	pdf save alert research feed the influence of individual and organizational factors on person-centred dementia care 	p. hunter, t. hadjistavropoulos, l. thorpe, l. lix, d. malloy 	medicine 	aging & mental health 	 	 save alert research feed psychosocial interventions for individuals with dementia: an integration of theory, therapy, and a clinical understanding of dementia. 	j. kasl-godley, m. gatz 	psychology, medicine 	clinical psychology review 	 	 	pdf save alert research feed systematic review of planned care transitions for persons with dementia. 	colleen a ray, victoria ingram, j. cohen-mansfield 	medicine 	neurodegenerative disease management 	 	 save alert research feed attitudes, stress, and satisfaction of staff who care for residents with dementia. 	s. zimmerman, c. williams, + authors p. sloane 	medicine 	the gerontologist 	 	 	pdf save alert research feed ... ... related papers 	abstract 	figures, tables, and topics 	paper mentions 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators blog posts, news articles and tweet counts and ids sourced by altmetric.com terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue the feasibility of brief dog-assisted therapy on university students stress levels: the paws study full terms & conditions of access and use can be found at http://www.tandfonline.com/action/journalinformation?journalcode=ijmh download by: [university of sheffield] date: october , at: : journal of mental health issn: - (print) - (online) journal homepage: http://www.tandfonline.com/loi/ijmh the feasibility of brief dog-assisted therapy on university students stress levels: the paws study emily wood, sally ohlsen, jennifer thompson, joe hulin & louise knowles to cite this article: emily wood, sally ohlsen, jennifer thompson, joe hulin & louise knowles ( ): the feasibility of brief dog-assisted therapy on university students stress levels: the paws study, journal of mental health, doi: . / . . to link to this article: http://dx.doi.org/ . / . . © the author(s). published by informa uk limited, trading as taylor & francis group. published online: oct . submit your article to this journal article views: view related articles view crossmark data http://www.tandfonline.com/action/journalinformation?journalcode=ijmh http://www.tandfonline.com/loi/ijmh http://www.tandfonline.com/action/showcitformats?doi= . / . . http://dx.doi.org/ . / . . http://www.tandfonline.com/action/authorsubmission?journalcode=ijmh &show=instructions http://www.tandfonline.com/action/authorsubmission?journalcode=ijmh &show=instructions http://www.tandfonline.com/doi/mlt/ . / . . http://www.tandfonline.com/doi/mlt/ . / . . http://crossmark.crossref.org/dialog/?doi= . / . . &domain=pdf&date_stamp= - - http://crossmark.crossref.org/dialog/?doi= . / . . &domain=pdf&date_stamp= - - http://tandfonline.com/ijmh issn: - (print), - (electronic) j ment health, early online: – � the author(s). published by informa uk limited, trading as taylor & francis group. doi: . / . . o r i g i n a l a r t i c l e the feasibility of brief dog-assisted therapy on university students stress levels: the paws study emily wood , sally ohlsen , jennifer thompson , joe hulin and louise knowles the school of health and related research, the university of sheffield, sheffield, united kingdom of great britain and northern ireland, the school of psychology, the university of birmingham, birmingham, united kingdom of great britain and northern ireland, and the university of sheffield counselling service, sheffield, united kingdom of great britain and northern ireland abstract background: pet therapy is becoming increasingly popular and is used in a variety of ways from encouraging communication in older adults to improving wellbeing in those with serious mental illness. increasingly universities have been offering pet therapy to students in an effort to reduce stress. however, little evidence currently exists to support the effectiveness of reducing measurable stress levels after a standalone drop-in unstructured session. the university of sheffield’s counselling service works in partnership with guide dogs for the blind to give students access to calm, well-trained animals for informal group stress relief. aims: to assess the feasibility of implementing and evaluating unstructured group interven- tions with a guide dog in training within the university student population. methods: one hundred and thirty-one students who attended pet therapy at the university counselling service were recruited on a voluntary basis to take part in the research. stress, measured on the state trait anxiety inventory, and blood pressure were taken before and after a -min intervention. results: all measures showed a statistically significant reduction immediately after the intervention. conclusion: short interactions with a guide dog in training appear to reduce stress in university students. a controlled study is required to investigate further. keywords pet therapy, students, stress, blood pressure, anxiety history received february revised july accepted august published online october background pet therapy as a therapeutic phenomenon has grown rapidly in recent decades with animal-assisted interventions being implemented across a range of healthcare environments, particularly those in mental health and wellbeing settings. interventions in these settings have demonstrated outcomes such as enhanced socialisation, stress reduction and improve- ment in general wellbeing, emotional dysfunction, and behav- ioural difficulties (munoz lasa et al., ) whilst benefits have been observed across the clinical population lifespan (barker & dawson, ; bernabei et al., ; stefanini et al., ). from autistic spectrum disorders (kern et al., ; o ’haire, ) to severe mental illness (barker & dawson, ; kamioka et al., ; maujean et al., ; wisdom et al., ), the literature increasingly indicates there is value in the facilitation of human–animal contact within interdisciplinary clinical practice. this therapeutic framework has resulted in the use of terms such as ‘‘pet therapy’’, ‘‘animal-assisted therapy’’ and ‘‘animal-assisted activities’’, referring to a reciprocal dynamic between humans and animals which addresses ‘‘physical and/or emotional needs’’ (adams, ; carmack, ). it is recognised that each may vary with regards to the duration of intervention, setting, target popula- tion and format (grandgeorge & hausberger, ). the time required for potential benefits of human–animal interaction to be observed may be minimal. healthcare professionals who interacted with a dog for as little as five minutes showed reduced biological markers of stress, as measured by salivary and serum cortisol levels; optimal measures were obtained minutes after the interaction whereby cortisol readings were significantly lower than baseline (barker et al., ). studies have also found mental health inpatients with mood and psychotic disorders to display significant reductions in anxiety on the state-trait anxiety inventory (stai) (spielberger, ) after a -min animal-assisted therapy session (barker & dawson, ). these findings were not replicated in a condition examining patients with substance misuse, however, further research has found interaction with a dog reduced anxiety in patients hospitalised with physical illness (coakley & mahoney, correspondence: dr emily wood, the school of health and related research, the university of sheffield, regent court, regent street, sheffield, s da, united kingdom of great britain and northern ireland. e-mail: e.f.wood@sheffield.ac.uk this is an open access article distributed under the terms of the creative commons attribution license (http://creativecommons.org/licenses/by/ . /), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. d ow nl oa de d by [ u ni ve rs it y of s he ff ie ld ] at : o ct ob er http://crossmark.crossref.org/dialog/?doi=&domain=pdf http://orcid.org/ - - - http://orcid.org/ - - - ). beyond the clinical population, recent years have seen the concept of pet therapy progress into the educational sector through use of sessions with a therapy dog as a stress reduction technique (crossman & kazdin, ). research utilising the student population to examine potential psychosocial, psychological and biological benefits is infrequent, and there are gaps in knowledge around effectiveness, type of interaction and dosage (crossman & kazdin, ). a recent study did find that students who attended animal-assisted therapy for an eight week course reported less homesickness and increased satisfaction and the dogs created a relaxing, soothing environment, however no measure of stress was reported (binfet & passmore, ). a randomised control trial with students stressed by an exam- ination period reported significant decreases in perceived stress after min with a dog, although there were no changes in salivary cortisol levels (barker et al., ). similarly, studies have found university students report lower levels of anxiety and loneliness following engagement with a therapy dog, along with improvements in the perception and acces- sibility of counselling services (daltry & mehr, ; stewart et al., ). interacting with a dog for seven to ten minutes led to significant reductions in state anxiety as measured by the stai, no change was observed in the control conditions (crossman et al., ). these findings are supported by the positive subjective feedback received at universities imple- menting pet therapy programmes (bell, ; reynolds & rabschutz, ); though it is apparent further research is required to better understand the role human–animal inter- action plays in an educational setting. broadly, human–animal contact has also been associated with direct cardiovascular benefits (allen et al., ), though findings are not yet conclusive. one study showed that positive interaction with a dog increased plasma b-endorphin, oxytocin, prolactin, phenyl acetic acid and dopamine serum levels concurrent to a decrease in serum cortisol levels; this led to significant reductions in arterial blood pressure after an average time of min interaction (odendaal & meintjes, ). observations of lowered blood pressure are thought to be indicative of a decrease in sympathetic nervous system activity, which can be subsequently linked to calming experiences (ganong, ; odendaal & meintjes, ). supporting this, high blood pressure is considered a major risk factor for cardiovascular disease due to heightened sympathetic activity (souter & miller, ) and elevated blood pressure, at least in the short-term, can be caused by stress (dickinson et al., ). interestingly, physiological benefits have been found to occur regardless of pet attitude scale scores suggesting biological effects (i.e. lowered blood pressure) arise independently of psychological and psycho- social outcomes (charnetski et al., ; marcus, ). despite these findings, physiological outcome measures are relatively overlooked in existing literature methodology: of papers reviewed in a meta-analysis examining the effectiveness of animal-assisted interventions for patients with depression, only nine utilised physiological measures (souter & miller, ). indeed, limitations and problems with studies in this field are not uncommon. a meta-analysis (nimer & lundahl, ) found only of studies were methodologically able to meet a minimal standard of rigor (herzog, ). studies are consistently limited by small sample sizes, inconsistent participant randomisation, selec- tion bias and attrition rates (kamioka et al., ; morrison, ). nonetheless, these limitations are combined with a broad spectrum of interventions, participant pools and environments to generate findings into the outcomes asso- ciated with animal-assisted therapies (palley, o’rouke, & niemi, ). the present study implemented a pragmatic design, using existing ‘‘pet therapy’’ sessions at the university of sheffield’s counselling service, to determine if short ( – min) unstruc- tured group interventions with a guide dog in training is long enough to produce measurable reductions in the stress levels of a university student population. blood pressure was measured, alongside the stai, as a physiological measure of stress. previous sessions have attracted – students over a three- hour session. preliminary feedback from these sessions has shown subjective levels of stress significantly decreased immediately following interaction with a therapy dog. qualitative feedback suggests five main responses from students: ( ) expressions of happiness, ( ) relaxation, ( ) a connection with the dogs, ( ) interaction with pets as a new experience (predominantly applicable to international stu- dents), and ( ) a request for the counselling service to repeat the event (counselling service, unpublished data). methods research question is it feasible to measure if interacting with guide dogs in training for – min in a group setting produces a reduction in stress levels in university students? objectives � determine if it is possible to get sufficient numbers of students to complete surveys and submit to having their blood pressure taken whilst waiting to see the guide dogs and to stay afterwards to complete the post intervention measures. � determine if – min interaction is long enough to measure a clinically significant and statistically reliable change in stress levels, as measured on the state part of the stai. � determine if – -min interaction is long enough to measure a change in blood pressure. feasibility study plan all the students who attended the university of sheffield’s counselling service pet therapy event were asked to complete a questionnaire and had their blood pressure taken before and after interacting with the guide dogs. attendance at the event is entirely voluntary, it is advertised university wide to all students and staff. as only a few students can be with the guide dogs at any one time, queues form outside the building. people in the queue were asked if they would like to participate in the study. the e. wood et al. j ment health, early online: – d ow nl oa de d by [ u ni ve rs it y of s he ff ie ld ] at : o ct ob er university counselling service advertise the pet therapy sessions on their website and facebook. this included information that the day was to be researched and students may be asked to take part so that they had advanced notice. it also stated that they do not have to and can see the dogs regardless. measures the primary outcome measure was the stai (spielberger, ). it consists of two scales, the state anxiety inventory (s- anxiety) and the trait anxiety inventory (t-anxiety). trait anxiety is relatively stable and refers to a person’s anxiety- proneness whereas state anxiety is a person’s emotional response to a situation (spielberger, ). normative means for college students are s-anxiety male . (sd . , alpha . ), female . (sd . , alpha . ), t-anxiety male . (sd . , alpha . ), female . (sd . , alpha . ) (spielberger, ). as well as the stai and blood pressure, demographic questions about their age, course (undergraduate or postgraduate), nationality (uk, eu and non-eu), gender and pet ownership were asked. they were assigned a unique identifier so that their data is anonymous but the post intervention score can be linked to the pre intervention score. procedure students waited in the queue to see the dogs. the research procedure was explained including that taking part (or not) would not affect their time with the dogs, or any further interactions with the counselling service in any way. any student who agreed to take part was asked to complete a questionnaire (stai) and have their blood pressure taken. groups of six students then get min with one or two young guide dogs in training. pet therapy sessions have been run within the service before. this intervention will not be changed for this feasibility study. researchers were not in the room with the students and the dogs. once the students leave the room with the dogs, any students who completed baseline measures before seeing the dogs were asked to complete the stai state scale and have their blood pressure taken again. the dogs were guide dogs in training and the handlers were all guide dog trainers. each dog had its own handler. the handlers would chat with the students and answer any questions they had. they were not instructed to encourage any interaction between the students and the dogs, that was up to the student. if the dogs became tired or needed a break the handlers took them out of the room. ethical approval for the project was granted by the departmental research ethics committee on behalf of the university. informed consent was sought from all the participants. analysis the analysis was a two stage process. the primary objective was a feasibility one – can sufficient numbers of participants be recruited to the study and would they remain after seeing the dogs to complete the after measures? securing high-recruitment rates meant we could conduct further analyses to look for a difference in the before and after scores and to see if any of the demographics may predict outcome. statistically reliable change (jacobson & truax, ) is a way of determining if the change is likely to be real or simply an artefact due to the unreliability of the instrument. a reliable change index (rci) can be determined for each measure, it is a variation on the standard error (evans et al., ). if the client’s score on the measure changes between the initial and end of therapy reading by more than the rci, then we can be confident that in % of cases, this change will be real and not due to error in the measure, (i.e. it is statistically significant). sediff ¼ sd � ffiffiffi p � ffiffiffi p �/ where the sd is the standard deviation of the baseline measurement and � is cronbach’s alpha (a measure of internal reliability). clinically significant change (evans et al., ) can be estimated using the clinical and normative distributions of the state anxiety inventory. this will calculate if a client has moved from the clinical distribution to a normative popula- tion distribution csc ¼ meanclin � sdnormð Þ þ meannorm � sdclinð Þ sdnorm þ sdclin normative data was gathered from published norms and clinical data comes from the sample in question. paired t tests were used to see if there was a significant difference between before and after state anxiety inventory scores and blood pressure. given the large number of students, cohen’s d was calculated for change on the state anxiety part of the stai scale and for both systolic and diastolic blood pressure readings cohen s d ¼ m � m ð Þ=sdpooled where m ¼mean at time , m ¼mean at time , sd¼standard deviation and sdpooled¼ p ((sd þsd )/ ) results data were collected on th october . approximately students attended the event. this was slightly lower than the year before when nearly attended; this was likely due to inclement weather (waiting students stand in line in the street with no cover from the rain and wind in the british autumn). in total students agreed to participate in the research over a three hour time period and completed at least some of the pre-intervention questionnaire; participants did not complete the trait anxiety inventory and we received usable post-intervention questionnaires. their demo- graphic data are displayed in table . table shows the comparisons of the before and after state anxiety inventory, systolic and diastolic blood pressure. paired samples t tests showed that on average there were significant reductions in systolic bp (p . ), diastolic bp (p . ) and state anxiety (p . ) following attendance at the pet therapy session. small effect sizes were recorded for differences in both systolic and diastolic bp and a large effect size was doi: . / . . paws: pet therapy for students d ow nl oa de d by [ u ni ve rs it y of s he ff ie ld ] at : o ct ob er recorded for differences in state anxiety. at the pre-intervention time period % of the students had clinical hypertension (systolic bp over mmhg). at the post-intervention time point % of students had clinical hypertension (systolic bp over mmhg). the rci for the state anxiety inventory (based on female norms due to the high level of females in our sample) is . . out of students with before and after state anxiety inventory scores, had a change of nine or higher indicating that the change was statistically reliable. figure provides a jacobson plot displaying reliable change for the state anxiety inventory. clinical significance for the state anxiety inventory is a score that moves below after the intervention. sixty-one participants started with a score of below and therefore any change would not be considered as moving from clinical to normative. of the remaining participants moved from a score above to one below indicating that the change we saw was clinically significant, in those whose anxiety levels were high enough to be considered clinically relevant. discussion recruiting students to the study and retaining them to the end of data collection was very successful. more females and undergraduates attended than expected. when compared to the published data for female college students, the pet assisted therapy with students (paws) sample appears to be slightly more anxious both on the state and trait anxiety inventories. however, as this is a self-selecting sample who chose to attend a university counselling service for a relaxation session this is perhaps not unexpected. the participants showed statistically significant reduction in systolic and diastolic blood pressure and in state anxiety, although only the state anxiety scale showed a large effect size. sixty-five percent of the participants showed statistically reliable change on the state anxiety inventory. only % showed clinically significant change overall but almost half ( %) were below the cut off before they started and, therefore, considered within the normative distribution not the clinical distribution. of the % whose pre-treatment score was within the clinical distribution, % showed clinically significant change. this study has shown that even with a time limited intervention spending time with dogs can reduce both figure . a jacobson plot showing the statistically reliable and clinically significant change for all the participants. the central dotted line shows no change, the dashed tramlines either side of the central line show statistical reliability. any data point outside these lines is considered to be reliable change and not due to measurement error. as a lower score on the state anxiety inventory denotes less anxiety a data point below the central line is a participant whose anxiety decreased after spending time with the dogs. st at e an xi et y p o st s co re state anxiety pre score jacobson plot for the state anxiety inventory table . the demographic data of the participants. total participants n age range – mean (sd) . ( . ) course undergrad n (%) ( . ) postgrad n (%) ( . ) gender male n (%) ( . ) female n (%) ( . ) nationality uk n (%) ( . ) eu n (%) ( . ) international n (%) ( . ) pet ownership pet at home n (%) ( . ) pet at uni n (%) ( . ) no pet n (%) ( . ) % of participants were aged – . table . paired t tests to compare means of the pre/post measures. mean pre (sd) mean post (sd) t test p value cohen’s d r systolic bp ( . ) ( . ) . . . diastolic bp ( . ) ( . ) . . . state anxiety inventory . ( . ) . ( . ) . . . e. wood et al. j ment health, early online: – d ow nl oa de d by [ u ni ve rs it y of s he ff ie ld ] at : o ct ob er perceived stress (state anxiety inventory) and biological markers of stress (blood pressure) in university students. this is in line with other studies (barker et al., ; crossman et al., ) although barker used a different bio- marker (cortisol) so it is not certain that they are measuring the same thing. a more recent study did not find any change in biomarkers, although it did in perceived stress (barker et al., ). this study used different measures (stai and blood pressure instead of the perceived stress scale and cortisol), however, the student populations were similar, stressed students with more females participating. the main difference between this study and barker’s trial however is the pragmatic nature of the intervention. in our study the counselling service ran the pet therapy sessions as they have been for several years, barker’s intervention was new and appears to be a standalone event rather than a regular service, although still sponsored by the counselling service. it also occurred just before an exam period when stress levels can be expected to be at an optimum. our study occurred mid-semester when no major stressful events would be affecting all students. as pet therapy sessions become more common, future research will need to ask participants about the number of previous pet therapy sessions they have attended as this may need to be controlled for. there is also a self-selection bias in this study and many others in pet therapy. a self-selecting set of students came to the pet therapy day and a self-selecting subset of them participated in the research. we did not collect any data on those who refused to participate, nor did we ask them to give a reason for refusing. for this reason, we cannot be sure that our sample is representative. the experiences with dogs questionnaire may also be important to include in further studies. we expect that most of the students who attended did so because they wanted to play with dogs. however, anecdotally, one of the students told the researcher collecting post intervention recordings that she was terrified of dogs and used the event as exposure therapy. she had not told anyone about this beforehand. this would have been a severely anxiety provoking situation and if we had a smaller sample size may have affected the results. earlier studies have suggested to get optimal readings from cortisol, the sample needs to be taken around min after the intervention (barker et al., ). we were able to take the blood pressure immediately post-intervention, allowing the students to leave quickly and reducing the burden of the research. however, the use of cortisol as a more direct measure of stress is recognised. in this study, due to time and financial considerations, we were unable to include cortisol testing. further studies may benefit from both blood pressure and cortisol measures. randomised controlled trials with large sample sizes like we managed to achieve here preferably with nested qualitative research may be helpful to determine who can get the most benefit and what sort of animals or breeds of dog may be most helpful. controlled studies comparing pet therapy to other relaxation sessions such as mindful colouring or meditation would also be helpful. applied research is a complicated task due to the number of stakeholders involved. this study was no exception. the charity, guide dogs for the blind provided the dogs and handlers for the event. although they knew the research was going to occur, they were not sufficiently briefed on the details. this made relationships on the day difficult. staff were present from guide dogs, the research department and the counselling service, at times it was very crowded in a small building. conclusions recruiting students at the pet therapy day was successful. despite the short intervention, statistically significant changes in state anxiety and blood pressure were seen including a very large uncontrolled effect size on the state anxiety inventory. in many studies, it is difficult to tell whether the participants got : : time with the animals or if they were part of a group. this study had groups of six students spending min with two dogs. this was a very short group-based intervention, but still showed significant results, this may be a very cost effective way to deliver stress management to study groups. further controlled research into cost effectiveness is required. acknowledgements the authors would like to thank the university of sheffield’s counselling service and guide dogs for the blind for hosting the research and professors glenys parry and alicia o’cathain for supporting and encouraging the development of the project. we would also like to thank tom ricketts, chris blackmore and dave saxon for peer review of the research. declaration of interest no potential conflict of interest was reported by the authors. funding this project was funded by a grant from the scharr research stimulation prize and by nihr clarhc yh. this article presents independent research by the national institute for health research collaboration for leadership in applied health research and care yorkshire and humber (nihr clahrc yh). the views and opinions expressed are those of the authors, and not necessarily those of the nhs, the nihr or the department of health. ethics statement ethical approval for the project was granted by the school of health and related research (scharr) research ethics committee on behalf of the university of sheffield. informed consent was sought from all the participants. orcid emily wood http://orcid.org/ - - - joe hulin http://orcid.org/ - - - references adams jmm. 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( ). another breed of ‘‘service’’ animals: stars study findings about pet ownership and recovery from serious mental illness. am j orthopsychiatry, , – . e. wood et al. j ment health, early online: – d ow nl oa de d by [ u ni ve rs it y of s he ff ie ld ] at : o ct ob er 	the feasibility of brief dog-assisted therapy on university students stress levels: the paws study 	background 	methods 	results 	discussion 	references wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the 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experiences in the context of life-threatening illness: the cardiac rehabilitation patient}, author={g. holder and w. c. young and sheeba nadarajah and a. berger}, journal={palliative and supportive care}, year={ }, volume={ }, pages={ - } } 	g. holder, w. c. young, + author a. berger 	published 	medicine 	palliative and supportive care abstract objective: one of the most prevalent life-threatening illnesses is heart disease. the initial trauma of being diagnosed with a life-threatening illness or having a cardiac event can begin a psychosocial chain reaction that results in a transformation of the lives of these patients. the goal of our study was to investigate the lived experiences of psychosocial healing in rehabilitation of cardiac patients using a qualitative written interview. method: a purposive sample of cardiac… expand view on cambridge press cambridge.org save to library create alert cite launch research feed share this paper citationsbackground citations methods citations view all topics from this paper 	illness (finding) 	experience 	heart diseases 	cardiac rehabilitation 	early diagnosis 	wounds and injuries 	patients citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency an assessment of meaning in life-threatening illness: development of the healing experience in all life stressors (heals) 	d. sloan, k. brintzenhofeszoc, + authors a. berger 	medicine 	patient related outcome measures 	 	 	pdf 	view excerpt, cites methods save alert research feed the influence of relationships on the meaning making process: patients' perspectives. 	d. sloan, k. brintzenhofeszoc, erin g mistretta, m. cheng, ann berger 	medicine 	annals of palliative medicine 	 	 	view excerpt, cites background save alert research feed gender differences in psycho-social-spiritual healing 	maría josé vicuña luna, r. ameli, n. sinaii, julia cheringal, s. panahi, a. berger 	medicine 	journal of women's health 	 	 	pdf save alert research feed development of the short-term life review performed by nurses as spiritual and psychological care for terminally ill cancer patients 	michiyo ando, t. morita, + authors yosuke uchi 	medicine 	 	view excerpt, cites background save alert research feed insights into the experience of liver transplant recipients with alcoholic liver disease: a descriptive qualitative study 	m. hochheimer, melissa l. moreland, m. tuten, j. lamattina, mark connelly, p. sacco 	medicine 	transplantation direct 	 	 save alert research feed the effects of life review on psycho‐spiritual well‐being among patients with life‐threatening illness: a systematic review and meta‐analysis 	y. chen, h. xiao, yanqing yang, xiuyan lan 	medicine 	journal of advanced nursing 	 	 save alert research feed the national institutes of health measure of healing experience of all life stressors (nih-heals): factor analysis and validation 	r. ameli, n. sinaii, maría josé vicuña luna, julia cheringal, b. gril, a. berger 	psychology, medicine 	plos one 	 	 	pdf save alert research feed a single center survey of health-related quality of life among acute myeloid leukemia survivors in first complete remission. 	m. cheng, b. smith, + authors t. smith 	medicine 	journal of palliative medicine 	 	 	 	view excerpt, cites background save alert research feed factors influencing the impact of depressive symptoms on physical functional capacity after cardiac rehabilitation 	k. wierenga, s. moore, jin-tao liu, a. sattar 	medicine 	rehabilitation nursing : the official journal of the association of rehabilitation nurses 	 	 	pdf save alert research feed advanced metrics for assessing holistic care: the “epidaurus ” project 	frederick o foote, h. benson, + authors e. sternberg 	psychology, medicine 	global advances in health and medicine 	 	 save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency testing a model of physical and psychological recovery after a cardiac event 	b. yates, k. kosloski, k. kercher, p. dizona 	psychology, medicine 	western journal of nursing research 	 	 	view excerpt, references background save alert research feed illness intrusiveness and quality of life in end-stage renal disease: comparison and stability across treatment modalities. 	g. devins, h. mandin, + authors s. buckle 	medicine 	health psychology : official journal of the division of health psychology, american psychological association 	 	 	view excerpt, references background save alert research feed illness intrusiveness and quality of life in end-stage renal disease: comparison and stability across treatment modalities. 	g. devins, h. mandin, + authors s. buckle 	medicine 	 	 	view excerpts, references background save alert research feed posttraumatic growth in the context of heart disease 	a. i. sheikh 	psychology 	journal of clinical psychology in medical settings 	 	 	view excerpt, references background save alert research feed the emotional impact of end-stage renal disease: importance of patients' perceptions of intrusiveness and control 	g. devins, y. binik, t. hutchinson, d. hollomby, p. barré, r. guttmann 	psychology, medicine 	international journal of psychiatry in medicine 	 	 save alert research feed psychosocial support, nursing challenges and collaborative research in cancer. 	p. adejumo 	medicine 	african journal of medicine and medical sciences 	 	 	view excerpts, references background save alert research feed psychosocial support, nursing challenges and collaborative research in cancer. 	adejumo po 	medicine 	 	 save alert research feed effects of social support and stressful life events on health-related quality of life in coronary artery disease patients 	m. staniūtė, j. brožaitienė, r. bunevic̆ius 	medicine 	the journal of cardiovascular nursing 	 	 save alert research feed relaxation response and spirituality: pathways to improve psychological outcomes in cardiac rehabilitation. 	b. chang, aggie casey, j. dusek, h. benson 	psychology, medicine 	journal of psychosomatic research 	 	 	pdf 	view excerpts, references background save alert research feed evaluation of a holistic cardiac rehabilitation in the reduction of biopsychosocial risk factors among patients with coronary heart disease 	s. kreikebaum, e. guarneri, g. talavera, h. madanat, t. smith 	medicine 	psychology, health & medicine 	 	 	view excerpt, references background save alert research feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue diagnosis, management, and treatment of alzheimer disease: a guide for the internist diagnosis, management, and treatment of alzheimer disease a guide for the internist stephanie s. richards, md; hugh c. hendrie, mb, chb a lzheimer disease (ad) is a diagnosis of inclusion based on patient history, physical ex- amination, neuropsychological testing, and laboratory studies; however, there is no de- finitive diagnostic test for ad. early recognition of ad allows time to plan for the future and to treat patients before marked deterioration occurs. effective treatment requires moni- toring of symptoms, functional impairment, and safety, and the use of multiple treatment modalities including pharmacotherapy, behavioral management, psychotherapies, psychosocial treatments, and support and education for families. pharmacotherapeutic agents available for ad only provide symp- tomatic relief. the cholinesterase inhibitors, tacrine and donepezil, are effective in improving cogni- tion, delaying nursing home placement, and improving behavioral complications in some patients. other cholinesterase inhibitors are in development, as are other cholinomimetic agents such as muscarinic and nicotinic receptor agonists. symptomatic treatments are available for the psychiatric manifestations of ad. anti-inflammatories, antioxidants, neurotrophic factors, and other agents are promising new treatments for the future. arch intern med. ; : - alzheimer disease (ad) is one of a group of neurodegenerative disorders that fre- quently cause dementia. dementia is char- acterized by a progressive cognitive de- cline leading to social or occupational disability occurring in a state of clear consciousness. specifically, ad is characterized clini- cally not only by an impairment in cogni- tion but also by a decline in global func- tion, a deterioration in the ability to perform activities of daily living, and the appear- ance of behavioral disturbances. when ad was originally described by alois alzhei- mer in , it was considered to be a rela- tively uncommon disorder. however, sub- sequent clinical and neuropathological studies identified the characteristic ad pa- thology of senile plaques and neurofibril- lary tangles as the most common cause of dementia in the elderly. with the aging of our population, the management and treat- ment of ad is likely to become one of the major public health problems facing our society in the next century. our knowl- edge of the pathophysiology and natural his- tory of the disease has increased greatly over the past decade, yet the definitive cause remains unclear and a cure has been elu- sive. nevertheless, we now have avail- able effective pharmacological and psy- chosocial interventions to alleviate the symptoms and suffering of patients with ad and their families. the purpose of this article is to discuss the epidemiology, pre- sentation, diagnosis, and pharmacologi- cal management of the disorder. epidemiology the prevalence of dementia in the united states in individuals aged years or older is about %, with these rates doubling if those with milder forms of dementia or cognitive impairment are included. rates of dementia are very much age depen- dent, doubling every years from % to % at ages to years, to % and higher after the age of years. alzhei- mer disease is by far the most common of the dementing disorders in the united this article is also available on our web site: www.ama-assn.org/internal. from the department of psychiatry, indiana university school of medicine, indianapolis. review article arch intern med/ vol , apr , © american medical association. all rights reserved. downloaded from: https://jamanetwork.com/ by a carnegie mellon university user on / / states, accounting for % to % of cases. - cost the calculated economic cost of the management and treatment of ad is staggering. the combined direct costs, including medical and long- term care and lost productivity, and indirect costs, including resource loss and family care, approach $ billion per year. in addition, there is also the immeasurable emotional cost to families who suffer tremen- dously watching their affected loved ones slowly lose their identity. risk factors our knowledge of putative genetic risk factors for ad has increased dramatically over the past decade. there is now evidence that certain types of early-onset, autosomal dominant ad are associated with gene mutations on chromosome , chromosome , and chromo- some . - these findings are im- portant for determining pathologic mechanisms but account for only a small proportion (about %) of all cases of ad. the presence of the apoee al- lele on chromosome has been as- sociated with a considerably greater risk for developing the more com- mon, late-onset form of ad. , , the effect appears to be dose depen- dent. the presence of a single e al- lele increases the risk of ad by - to -fold, whereas possessing the double e allele increases the risk from - to -fold. it must be remem- bered that possessing the e allele is neither necessary nor sufficient for the development of ad. therefore, apoe genotyping is not recom- mended as a predictive test for ad in asymptomatic individuals. how- ever, experts disagree on the utility of apoe genotyping as a diagnos- tic test. it may be useful for confir- mation in some patients with de- mentia when a diagnosis of ad is unclear, although the presence of or copies of the apoe e allele still does not make the diagnosis cer- tain and absence of the e allele does not preclude a diagnosis of ad. apoe genotyping, when used in patients with a clinical diagnosis of ad, may increase the specificity of the diagnosis. research on other risk factors for ad is relatively new. to date, only age, family history of demen- tia, and down syndrome consis- tently have been shown to be asso- ciated with ad. however, high education and ingestion of estro- gen, nonsteroidal anti-inflamma- tory drugs, and vitamin e may be protective. it is likely in the future that risk factor models involving ge- netic and environmental interac- tions will emerge. diagnostic processes and differential diagnosis as ad is both a clinical and a neu- ropathological entity, the defini- tive diagnosis of ad can be made only with a brain biopsy or an au- topsy. one of the major clinical ad- vances in the diagnosis of ad has been the promulgation of diagnos- tic criteria for possible and prob- able ad by a select group spon- sored by the national institute of neurological and related and com- municative disorders and stroke– alzheimer’s disease and related dis- orders association (table). using these criteria, the clinical diagnosis of ad has been confirmed at au- topsy in close to % of cases. it has been stated that ad is a diagnosis of exclusion. this is only partially cor- rect. while it is essential for the phy- sician to evaluate other possible causes of memory loss, a positive di- agnosis of probable ad can be made based on a characteristic history from a spouse or a knowledgeable informant together with a physical and neurologic examination. the differential diagnosis for ad in- cludes a broad range of other causes of dementia and nondementing metabolic or psychiatric illnesses. among the more important nondementing causes of dementia are delirium and depression. de- lirium is common in elderly sub- jects, particularly in inpatient set- tings and in nursing homes. unlike delirium in children, which is an acute disorder, delirium in the el- derly can be subacute at onset, stretch- ing over weeks or even months, char- criteria for clinical diagnosis of probable alzheimer disease* criteria include dementia established by clinical examination and cognitive test (mini-mental state examination or blessed dementia scale) and confirmed by neuropsychological tests deficits in $ areas of cognition progressive worsening of memory and other cognitive function no disturbance of consciousness onset between ages and years absence of systemic disorder or brain disease that could account for progressive cognitive deficits the diagnosis is supported by progressive deterioration of specific cognitive functions such as language (aphasia), motor skills (apraxia), and perception (agnosia) impaired activities of daily living altered behavior family history of similar disorders normal lumbar puncture, normal electroencephalogram or nonspecific changes, progressive cerebral atrophy on computed tomography features consistent with the diagnosis plateaus in the course of progression associated symptoms including depression, insomnia, incontinence, delusions, illusions, hallucinations, catastrophic outbursts, sexual disorders, or weight loss neurologic signs including increased muscle tone, myoclonus, or gait disorder seizures (in advanced stage) computed tomography normal for age features that make the diagnosis uncertain or unlikely sudden, apoplectic onset focal neurologic findings such as hemiparesis, sensory loss, visual field deficits, and incoordination (early in the course) seizures or gait disturbance (at the onset or early in the course) *from the national institute of neurological and communicative disorders and stroke–alzheimer’s disease and related disorders association work group. arch intern med/ vol , apr , © american medical association. all rights reserved. downloaded from: https://jamanetwork.com/ by a carnegie mellon university user on / / acterized by apathy rather than agitation, and vague paranoid symp- toms rather than vivid hallucina- tions. thus, delirium in the elderly can often be misdiagnosed. com- mon causes of delirium include in- fection (particularly urinary tract in- fections), hypoglycemia, electrolyte abnormalities (such as those accom- panying dehydration), hepatic dys- function, renal insufficiency, endo- crine dysfunction (particularly thyroid abnormalities), and medi- cations (especially anticholinergic agents, benzodiazepines, hista- mine antagonists, and narcotics), all of which are eminently treatable. de- lirium and dementia can coexist. in fact, dementia predisposes to the de- velopment of delirium with even modest metabolic insults. severe depression in the el- derly is often accompanied by com- plaints of memory loss and the pres- ence of mild cognitive deficits on neuropsychological testing. in de- pression, the subjective complaints of cognitive impairment often ex- ceed the neuropsychological defi- cits, and the primary problem seems to be one of motivation or lack of ef- fort. depression and dementia can coexist, however. among the dementing disor- ders, vascular dementia follows ad as the second most common form. the vascular dementias usually, but not always (eg, binswanger dis- ease), have a relatively acute onset temporally related to a vascular event such as transient ischemic attack or stroke and have a more fluctuating course than ad. focal neurologic signs or symptoms usually accom- pany them. cerebrovascular changes can also coexist with ad path- ology, and this combination can adversely affect the dementing process. other neurodegenerative dis- orders that can cause dementia in- clude parkinson disease, hunting- ton disease, pick disease, and dementia with lewy bodies. parkin- son disease and huntington dis- ease are characterized by extrapy- ramidal signs, which usually predate the cognitive decline. pick disease is one of the frontal lobe dementias and usually presents with behavioral dis- inhibition, poor insight, and lan- guage deficits early in the course of the illness. memory and construc- tional praxis are relatively spared early on. frontal and temporal lobe atrophy is usually evident on com- puted tomography. dementia with lewy bodies is a progressive demen- tia characterized by detailed recur- rent visual hallucinations, parkin- sonism, and fluctuations of alertness and attention. other common fea- tures include frequent falls, syn- cope, systematized delusions, and neuroleptic sensitivity. autopsy se- ries findings demonstrate cortical lewy bodies in % to % of de- mentia cases and there may be over- lap with ad. a long history of heavy use of alcohol can also cause dementia. creutzfeld-jakob disease is an example of an infectious cause of de- mentia caused by prions. creutzfeld- jakob disease is characterized by relatively sudden onset and rapid progression with myoclonic jerks, pyramidal frontal motor signs, vi- sual agnosia, and death within months. other neurologic disorders less commonly associated with demen- tia include normal pressure hydro- cephalus, subdural hematoma, brain tumor, posttraumatic brain injury, and posthypoxic damage. diagnostic evaluation a diagnostic evaluation for demen- tia involves a complete history, neu- ropsychological examination (eg, the mini-mental state examination [mmse]), physical examination, and selected laboratory studies and neuroimaging. the history should be obtained from a reliable in- formant. in this regard, attention should be paid to change in cogni- tion and functioning relative to pre- vious performance, mode of onset of impairment (insidious onset is char- acteristic of ad), progression of illness (slow gradual decline is typi- cal of ad), and duration of impair- ment (it is important to repeatedly ask if there were any earlier signs that may have indicated a change). one should ask about all cognitive do- mains and give examples of early signs. for example, when asking about memory impairment, one could ask if the patients have diffi- culty remembering what day it is, what they ate for the previous meal, or if they have trouble keeping ap- pointments. be aware that patients and families often make excuses for memory problems. for the lan- guage domain, one could ask if the patients have trouble finding the right word for things or call some- thing by the wrong name, mispro- nounce words, or if they feel that they have more trouble expressing themselves verbally. for praxis, it would be appropriate to ask if they have trouble figuring out how to use machines that they knew how to use before (microwave, washing ma- chine, or lawn mower) or if they have trouble with any skills (crafts or hobbies) in which they previ- ously engaged. for agnosia, deter- mine if they have trouble recogniz- ing common objects such as a telephone, toaster, or broom. diffi- culty with executive functioning manifests as trouble with complex tasks such as preparing a meal or managing finances. in addition to in- quiring about cognitive function, it is critical to inquire about the use of prescription and over-the-counter medications, alcohol, and illicit drugs and their temporal relation- ship to any cognitive changes. the instrument used most commonly for assessing cognitive function is the mmse. this instru- ment is a nonspecific screen for cog- nitive function and has some limi- tations. the mmse is not sensitive for detecting cognitive impairment in individuals with higher levels of education or high levels of premor- bid functioning. conversely, those with low levels of education or mi- nority cultural backgrounds may score low on the test without hav- ing impairment. however, the mmse is especially useful when re- peated regularly to follow illness pro- gression. a complete physical and neu- rologic examination is indicated. fo- cal neurologic signs may suggest vascular dementia or some other neurologic disorder, and parkinson- ism suggests parkinson disease or dementia with lewy bodies disease depending on the time course of symptoms relative to the cognitive impairment. results of the neuro- logic examination are usually essen- tially normal in early ad. arch intern med/ vol , apr , © american medical association. all rights reserved. downloaded from: https://jamanetwork.com/ by a carnegie mellon university user on / / laboratory evaluation should include tests for complete blood cell counts, electrolytes, blood chemis- tries, liver functions, thyrotropin lev- els, vitamin b levels, and a sero- logic test for syphilis. other tests should be obtained as indicated by the history such as erythrocyte sedimentation rate (autoimmune disease), heavy metal screen (indus- trial exposure), human immunode- ficiency virus (with human immu- nodeficiency virus risk factors), and toxicology screen (suspected use of illicit drugs). an electroencephalo- gram reveals nonspecific changes and is rarely indicated except to di- agnose creutzfeld-jakob disease, a disease associated with a character- istic periodicity on the electroen- cephalogram, or hepatic encepha- lopathy with characteristic triphasic waves. a neuroimaging study may be obtained in a complete workup to rule out neurologic disease, which may contribute to cognitive decline, but is not required for diagnosis un- less warranted by unusual findings. a computed tomographic scan of the head without contrast is usually suf- ficient to rule out cerebrovascular dis- ease, subdural hematoma, normal pressure hydrocephalus, or brain tu- mor. magnetic resonance imaging is more expensive but is better for vi- sualizing small subcortical lacunae and mesial temporal lobe atrophy (in coronal slices). however, there is a tendency to overread vascular changes (periventricular and subcor- tical white matter hyperintensities) on magnetic resonance imaging. single proton emission computed to- mography may be helpful in atypi- cal, difficult, or early cases. in ad, there is a characteristic hypoperfu- sion in the temporal and parietal lobes. in vascular dementia, there are more patchy changes. pick disease is marked by frontal and temporal lobe perfusion defects. single pro- ton emission computed tomogra- phy may be most useful in distin- guishing ad from vascular dementia and frontotemporal dementia, but should be used selectively and only as an adjunct to clinical evaluation and computed tomography. posi- tron emission tomography has the advantage of greater sensitivity and spatial resolution but at a much higher price, and while it is a better tool for research purposes, it has lim- ited clinical application. single pro- ton emission computed tomogra- phy is simpler to perform, less expensive, and has greater poten- tial in the clinical setting than posi- tron emission tomography. detailed neuropsychological testing is also helpful in character- izing the pattern of cognitive im- pairment. it is also more sensitive than a screening instrument such as the mmse in detecting early impair- ment in highly educated individu- als. it also provides a quantitative measure, which affords the ability to follow disease progression over time. if the diagnosis remains un- clear after a complete evaluation, there are several options. repeat- ing the cognitive testing in months will determine if there is progres- sive cognitive decline during the in- tervening period. more complete neuropsychological testing may also be helpful. consultation with a spe- cialist, either a neurologist or geri- atric psychiatrist, is warranted. importance of early diagnosis early diagnosis of ad is important for many reasons. patients may present with nonspecific physical complaints that may prompt exten- sive and costly diagnostic workups and unnecessary treatments. early recognition allows the possibility of treating with agents that can slow the cognitive decline at a point where there is still minimal impairment. early diagnosis also allows the patient and the family time to plan for the future such as developing advanced directives and appoint- ing durable power of attorney while competence is not yet an issue. the practitioner can educate the pa- tient and the family regarding dis- ease progression and prognosis, provide support, and monitor judg- ment and safety issues so that the patient can continue independent or community dwelling as long as possible. unfortunately, ad is frequently not diagnosed at this early stage de- spite visits to the primary care phy- sician. there are many reasons for this delay in diagnosis. patients and families often underreport symp- toms, families attribute symptoms to normal aging and compensate for functional impairment, and social skills are maintained, masking any impairment during a short, fo- cused office visit. even when cog- nitive testing is performed, individu- als with dementia may score in the “normal” range on the mmse. re- sults of laboratory tests are normal in ad so a diagnostic workup will not reveal any abnormalities. there is a need to improve early recognition of ad in the primary care setting and to avoid delays in diagnosis. practitioners should screen for functional and cognitive decline and any concerns should prompt a full dementia workup. treatment of ad in the primary care setting the successful treatment of ad in- volves multiple treatment modali- ties targeting various aspects of the illness and its consequences for the patient and the family. again, it is important to stress the necessity for accurate diagnosis of ad and early recognition to provide the best pos- sible treatment. while there is no cure for ad, there are approaches to improving cognition and possibly delaying the progression of the ill- ness, and there are efficacious treat- ments for the psychiatric and be- havioral manifestations. another important aspect of treatment is helping the patient and the family with the legal aspects, supporting the family through caregiving, and assisting with decisions about long- term care placement. providing reg- ular appointments for maintenance and surveillance is necessary to meet the goals of minimizing ex- cess disability and ensuring safety and security. pharmacological treatment of ad there are several conceptual ap- proaches to the treatment of ad. the first approach is to treat symptom- atically. this includes treating the cognitive impairment, decline in glo- bal function, deterioration in the ability to perform activities of daily living, and behavioral distur- arch intern med/ vol , apr , © american medical association. all rights reserved. downloaded from: https://jamanetwork.com/ by a carnegie mellon university user on / / bances. this approach reflects the current state of treatment. another approach is to slow disease progres- sion or delay onset of disease. even- tually, it may be possible to be able to prevent the development of ad or even repair neuronal damage af- ter onset of disease. these latter ap- proaches are currently being inves- tigated at a basic science level. the only currently available therapeu- tic agents are targeted at specific symptoms of ad. cognitive impairment cholinesterase inhibitors.—alzhei- mer disease is in part a disorder of cholinergic functioning. degenera- tion of basal forebrain cholinergic sys- tems is a hallmark feature of ad and appears to be associated with cogni- tive deficits, functional impairment, and behavioral disturbances. one strategy for ameliorating the symp- toms of ad is to enhance choliner- gic neurotransmission. acetylcho- linesterase inhibitors are the best studied and the only currently avail- able agents for the symptomatic treat- ment of ad. acetylcholinesterase in- hibitors delay the degradation of acetylcholine at the synaptic cleft, thus potentiating cholinergic neuro- transmission. the only agents currently available for the treatment of ad are the cholinesterase inhibitors ta- crine and donepezil. both agents in- hibit acetylcholinesterase in a dose- dependent manner. both are effective in improving performance on a test of cognitive function and global per- formance in patients with mild to moderate ad. - cognitive im- provements are, on average, mod- est and may not be clinically rel- evant in many patients. however, some patients demonstrate a dra- matic improvement in cognitive scores that is readily observable in daily functioning. some cholinester- ase inhibitors are also associated with improvement in behavioral symp- toms, including depression, psycho- sis, and agitation, even in the ab- sence of profound cognitive change. however, this is based on an open- label study. cholinesterase inhibi- tors are also associated with a delay in nursing home placement. meth- odological limitations of this study in- clude the open-label, nonrandom- ized, and nonblinded design. studies of acetylcholinesterase inhibitors have generally shown an initial improvement in cognitive scores beginning early in the treat- ment course with a subsequent de- cline at a rate similar to untreated patients with ad. when the medi- cation is stopped, cognitive function- ing declines to nontreatment levels. this is consistent with the hypoth- esis that cholinesterase inhibitors pro- vide symptomatic relief without al- tering the disease course. the long- term effects or continued benefit of cholinesterase inhibitors will be- come clearer in clinical practice. one neuroimaging study demonstrated increased regional cerebral blood flow in the parietal lobe, which per- sisted up to months with contin- ued treatment. treatment with tacrine re- quires a lengthy dose titration begin- ning with mg orally times daily and increasing by mg times daily every weeks as tolerated to a maxi- mum of mg/d. only doses of to mg/d are significantly more ef- ficacious than placebo. however, dose titration is frequently limited by ad- verse effects to the gastrointestinal tract or hepatic transaminase eleva- tions. transaminase activity (ala- nine and aspartate aminotransfer- ase) must be monitored weekly until a steady dose has been achieved for weeks, after which monitoring ev- ery months is sufficient. if trans- aminase activity levels rise to more than times the upper limit of nor- mal, treatment with tacrine should be discontinued. transaminase eleva- tions are usually asymptomatic and reversible and patients may be rechal- lenged after transaminase normaliza- tion (see package insert for details). donepezil has replaced ta- crine as the first choice “cognitive enhancer” owing to ease of admin- istration, less titration, greater tol- erability, relative lack of hepa- totoxic side effects, and absence of monitoring requirements. donepe- zil is selective for acetylcholinester- ase and is longer acting than ta- crine. it is metabolized via the hepatic cytochrome p system and is highly plasma protein bound. donepezil is administered in once- daily dosing and requires less ex- tensive titration. dosing is initiated at mg/d and may be increased to mg/d in month. it is well tol- erated and the most common ad- verse effect is gastrointestinal tract distress (nausea, vomiting, and di- arrhea). other cholinesterase inhibi- tors are in development and are expected to reach the market soon. metrifonate is a prodrug for the long-acting cholinesterase inhibi- tor, , -dichlorovinyl dimethyl phosphate. its pharmacokinetic profile permits once-daily dosing. early studies demonstrate improve- ment in cognitive scores and global function compared with placebo, with few adverse effects. - rivastig- mine is a central nervous system– selective, pseudo-irreversible, car- bonate-selective cholinesterase inhibitor. dosing is or times daily and extensive titration is re- quired. it is well tolerated at the lower doses with predominantly adverse ef- fects on the gastrointestinal tract. heptylphysostigmine is a derivative of physostigmine with a long dura- tion of inhibition. several other agents are also in development. other cholinergic agents.— an- other strategy targeting the cholin- ergic system is specific cholinergic receptor agonists. muscarinic ace- tylcholine postsynaptic m recep- tors are relatively intact in ad, while the m presynaptic receptors are de- creased. agents that target the post- synaptic m receptors are being de- veloped. there is some evidence suggesting that these agents may also slow disease progression, but most have not been well tolerated at thera- peutic doses. xanomeline is a selec- tive m and m agonist that has demonstrated moderate efficacy in improving cognitive performance, but even greater efficacy in decreas- ing psychotic symptoms and agita- tion. however, adverse events to xanomeline were associated with high discontinuation rates prima- rily because of adverse effects on the gastrointestinal tract and syncope. other cholinergic agonists in de- velopment include milameline, sb , af b, and ens- . stimulation of presynaptic nico- tinic receptors increases the release of acetylcholine and may be associ- arch intern med/ vol , apr , © american medical association. all rights reserved. downloaded from: https://jamanetwork.com/ by a carnegie mellon university user on / / ated with cognitive improvement in selected domains. therefore, nico- tinic acetylcholine receptor ago- nists also appear promising. disease-altering treatment strategies one target for disease-altering treat- ments is apoptosis or programmed cell death. mechanisms that are im- plicated in neuronal degeneration are the inflammatory response and oxi- dative stress. the inflammatory re- sponse contributes to cell death in part by triggering release of free radicals. an accumulation of free radicals in turn damages cell membranes and triggers the neurodegenerative cas- cade. in addition, components of the inflammatory response are found in association with senile plaque forma- tion. anti-inflammatory agents may be protective against ad; in epide- miological studies, the use of anti- inflammatory drugs is associated with a decreased risk of ad. prednisone is currently under investigation for the treatment of ad. antioxidants may also be protective against cell death. in one clinical trial, alpha- tocopherol (vitamin e) and selege- line hydrochloride (l-deprenyl), a se- lective monoamine oxidase–type b inhibitor that acts as an antioxidant, demonstrated efficacy in delaying ad- verse events. methodological limita- tions of this study include poor ran- domization whereby baseline scores on the mmse were higher in the placebo group, requiring adjust- ment for this in the analysis. chelat- ing agents may also work via an an- t i o x i d a n t m e c h a n i s m . o t h e r monoamine oxidases are currently under investigation. neurotropic factors may have a modulating effect on neuronal structural integrity and neurotrans- mitter function. estrogen acts as a neurotropic factor and may be pro- tective in decreasing the incidence or delaying the onset of ad and en- hancing response to cholinesterase inhibitors. , it is currently being investigated as a treatment for ad. other neurotrophic factors under in- vestigation include nerve growth fac- tor and other agents that enhance its effect. other treatment strategies in- volve blocking the abnormal phos- phorylation of tau proteins, prevent- ing amyloid deposition, blocking amyloid toxicity, and lowering apoe e levels. ganglioside gm and phosphatidylserine have mem- brane effects that may interfere with the disease process. other poten- tial treatment under investigation in- clude ergot alkaloids (ergoloid me- sylates and nicergoline ), nootropics (piracetam, oxiracetam, prami- racetam, and aniracetam), and vinca alkaloids. these agents have mul- tiple putative mechanisms of ac- tion including cholinergic and do- paminergic properties, as well as effects on protein processing and cel- lular metabolism. however, stud- ies to date involving these agents have shown them to be generally ineffective. functional impairment alzheimer disease is associated with a gradual decline in global function- ing. instrumental activities of daily living are the first to deteriorate. these include managing finances, shopping, cooking, cleaning, and maintaining an independent life- style. basic activities of daily living include bathing, toileting, dress- ing, and feeding oneself. eventu- ally, patients with ad become un- able to perform even these basic tasks. functional impairment of- ten prompts changes in levels of care from independent living to more ac- tive involvement of family to living with a family member or assisted liv- ing, and often eventually to skilled care or a nursing home. effective treatment for func- tional decline is the same as for cog- nitive impairment. the cholinester- ase inhibitors have been shown to delay outcomes of functional de- cline and are the only currently avail- able treatment. psychiatric manifestations of ad psychiatric manifestations are com- mon in ad and occur in almost all patients at some point in their ill- ness. behavioral disturbance is the most common symptom and oc- curs in up to % of patients with dementia. behavioral distur- bance, especially agitation and wan- dering, is associated with greater cognitive impairment, is the symp- tom most likely to emerge during the course of treatment, and is the most persistent. it is the symptom that is the most troubling to families and caregivers and is the most common reason for institutionalization in long-term care facilities and for re- ferral to specialists. psychosis is the next most common psychiatric manifestation and includes delu- sions, most commonly paranoid and misidentification delusions, and hal- lucinations, with visual more com- mon than auditory hallucinations. delusions are associated with greater cognitive and functional impair- ment and show moderate persis- tence over time. psychosis may also be associated with more rapid cog- nitive decline. depressive symp- toms are present in up to % of pa- tients with ad, with about % to % having a diagnosable depres- sive disorder. depressive symp- toms are less likely to emerge dur- ing the course of ad than psychosis and behavioral disturbance, and are the least persistent. comorbid de- pression is associated with greater cognitive impairment, greater level of disability, and higher rates of in- stitutionalization, mortality, and functional impairment. effective treatment of the psy- chiatric manifestations of ad can im- prove quality of life for patients and their families, decrease caregiver bur- den, decrease health care utiliza- tion, and delay institutionalization. treatment can also significantly de- crease the risk of harm to the pa- tients and their caretakers. nonpharmacological treat- ment approaches should be at- tempted first before pharmacologi- cal treatments. environmental manipulation or simple behavioral techniques may be helpful. in this regard, creating a safe and consis- tent environment with moderate stimulation, contrasting colors, and pictures for directions and signs may be useful. a structured routine and consistent environment as free from change as possible also can help eliminate confusion. additionally, it may be desirable to provide familiar personal objects such as pictures and momentos, as well as cues for orien- tation like calendars and clocks. com- arch intern med/ vol , apr , © american medical association. all rights reserved. downloaded from: https://jamanetwork.com/ by a carnegie mellon university user on / / munication should be clear and simple. behavioral interventions such as validation and not correcting mis- statements can ease anxiety. pa- tients should be encouraged to be ac- tive participants in their care and in decision making. emotion- oriented psychotherapy, supportive psychotherapy, interpersonal psycho- therapy, and reminiscence therapy may be beneficial in individual cases. stimulation-oriented therapy such as music, art, and pet therapy and exer- cise may be helpful for others. because the psychopathology changes over the natural course of the illness, treatments must be moni- tored and periodically reevaluated for continued appropriateness. since depressive symptoms are not per- sistent over time, short-term anti- depressant treatment is probably in- dicated. psychotic symptoms are moderately persistent and long- term antipsychotic use is associ- ated with significant morbidity and adverse effects, so antipsychotics should be tapered if possible. be- cause behavior disturbance is more persistent, long-term treatment is likely necessary. treatment of depression in ad recognition of depression in ad may be complicated by an overlap of symptoms between the disor- ders and failure to meet strict crite- ria for a depressive disorder. any patient with dementia with signifi- cant depressive symptoms such as sleep, appetite, or energy distur- bance, depressed mood or irritabil- ity, anhedonia, social withdrawal, excessive guilt, a passive death wish or suicidal ideation, or agita- tion should be considered for treat- ment of depression even if failing to meet criteria for a depressive disorder. there are limited data on the treatment of depression in ad, , so treatment strategies are extrapo- lated from the treatment of depres- sion in elderly patients without de- mentia. in general, starting doses are half those normally used in adults and titration is at smaller incre- ments and slower, to allow for the decreased rate of metabolism. effec- tive doses in patients with ad may be lower than in adults or may be the same as in younger patients. selective serotonin reuptake inhibitors (ssris) are first-line agents because they are the best tolerated, do not have cognitive adverse effects, and may even improve cognitive function inde- pendent of antidepressant effects. the choice of an ssri is dependent on pharmacokinetics and adverse- effect profiles. sertraline has few interactions with the cytochrome p system and little anticholin- ergic activity, so it is a good first choice ssri for the patient with ad. fluoxetine, with its long half- life and active metabolite, make it less desirable in the elderly unless noncompliance is a problem; the long half-life allows for adequate levels to be maintained even when doses are missed. paroxetine is the m o s t a n t i c h o l i n e r g i c o f t h e ssris and, theoretically, may have more adverse effects on cognition. fluvoxamine has a relatively short half-life and the twice-daily dosing may impair compliance. the start- ing dose of ssri therapy should be half that normally used in adults (ie, mg of sertraline or mg of fluoxetine). the most common adverse effects with the ssris are transient headache, nausea and vomiting, diarrhea, anxiety, rest- lessness, psychomotor agitation, insomnia, and lethargy. several atypical antidepres- sants are available. venlafaxine in- hibits both serotonin and norepi- nephrine reuptake without having anticholinergic adverse effects. most common adverse effects are nau- sea, anxiety, insomnia, dizziness, constipation, and sweating. bupro- pion has an atypical and not well- understood mechanism of action. it is a weak norepinephrine uptake inhibitor but is a stronger inhibitor of dopamine uptake. the dopamin- ergic effect may be beneficial in some patients and may be stimulating and particularly effective for apathy. bu- propion is generally well tolerated with most common adverse effects being insomnia, anxiety, headache, tremor, nausea, dry mouth, and con- stipation as well as a dose-related in- crease in risk of seizures. mirtazap- ine is an a -antagonist and serotonin type and type ( ht and ht ) receptor antagonist and may be ef- fective in treating refractory pa- tients. however, it is sedating and causes weight gain in some pa- tients. nefazodone is a serotonin reuptake inhibitor and ht a recep- tor antagonist. it is administered in twice-daily dosing and the most common adverse effects are leth- argy, dizziness, and dry mouth. t r i c y c l i c a n t i d e p r e s s a n t s should be used only if better toler- ated agents are ineffective or in de- pression severe enough to warrant inpatient psychiatric hospitaliza- tion. tertiary tricyclic antidepres- sants (imipramine and amitripty- line) should never be used in patients with ad because of the an- ticholinergic effects. nortriptyline is the tricyclic antidepressant of choice because of fewer anticholinergic ef- fects. serum levels and electrocar- diogram should be monitored at steady state before each dose in- crease with target levels of to ng/ml. adverse effects include or- thostatic hypotension, which places patients at risk for falls and hip frac- tures, cardiac conduction delays, and anticholinergic effects such as uri- nary retention, constipation, cogni- tive impairment, and delirium. s p e c i f i c t a r g e t s y m p t o m s should be identified and moni- tored through the course of treat- ment to determine treatment re- sponse and to guide dose titration. cognition should also be moni- tored with a simple instrument such as the mmse. treatment should be reevaluated periodically as depres- sive symptoms may decrease with natural disease progression. if symp- toms are adequately controlled and there is no history of recurrent ma- jor depression, consider tapering the antidepressant in months. be pre- pared to reinstitute treatment if any depressive symptoms reemerge. treatment of psychosis in ad choice of antipsychotic is deter- mined by the adverse-effect profile. the low-potency agents, such as chlorpromazine, have significant an- ticholinergic adverse effects while the high-potency agents, such as halo- peridol, have significant extrapyra- midal adverse effects causing parkin- arch intern med/ vol , apr , © american medical association. all rights reserved. downloaded from: https://jamanetwork.com/ by a carnegie mellon university user on / / sonism; both can predispose to falls. the newer atypical agents (risperi- done, olanzapine, quetiapine, and clozapine) or midpotency agents such as perphenazine are preferred because of fewer adverse effects. haloperidol has demonstrated efficacy for psychosis and behav- ioral disturbance in dementia and was considered the criterion standard agent. however, its use is limited by extrapyramidal adverse effects even at relatively low doses, and it also causes cognitive deterioration. r i s p e r i d o n e h a s d e m o n - strated efficacy in psychosis and agi- tation in ad. even relatively low doses can produce the disabling ex- trapyramidal syndrome in older pa- tients. other potential adverse ef- fects include postural hypotension and sedation. olanzapine and queti- apine, the newest atypical antipsy- chotic agents, have not yet been well studied in this population. clozap- ine has demonstrated efficacy in el- derly patients with psychosis but, owing to the risk of agranulocyto- sis and need for weekly blood moni- toring, it is not a first-line agent in ad. it should be reserved for patients who develop significant extrapyramidal syndrome or who remain refractory to other antipsy- chotics. clozapine is a low-potency agent and is associated with ortho- static hypotension and sedation. there are no data on the long- term benefits of antipsychotics al- though the long-term risks are well un- derstood. antipsychotic use should be reevaluated periodically (every - months) to determine continued ne- cessity. dose tapering should be at- tempted if symptoms are under ad- equate control. if symptoms reemerge during drug taper, an effective dose should be reinstituted. the most se- rious long-term risk is tardive dyski- nesia, which occurs at a much higher rate in elderly patients. estimates of the risk of tardive dyskinesia in the el- derly begin at % in the first year and increase to % after years of an- tipsychotic exposure. the omnibus reconciliation act regulations for nursing home care require frequent reevaluation of continued use of an- tipsychotics and other psychotropic medications. dose reductions should be attempted at least twice per year to determine continued necessity. treatment of agitation in ad the diagnostic evaluation of agi- tated behavior should begin with a thorough medical evaluation to search for a treatable cause such as urinary tract infection, fracture, decubitus, constipation, or reaction to a medi- cation or drug interaction. the un- derlying medical problem should be treated or the offending medication discontinued. once a physical ill- ness has been ruled out, the under- lying psychopathology should be determined and treated appropri- ately. agitation may be associated with underlying depression, anxi- ety, psychosis, or delirium. if there is no underlying problem and the agi- tation is an isolated disturbance, an- tipsychotics are the most effective treatments. in a meta-analysis of an- tipsychotic trials, antipsychotics were significantly more effective than placebo in reducing agitation, but there was a modest effect size, with only % of patients benefiting from antipsychotics over placebo. no an- tipsychotic was better than any other. other treatment strategies for which there is limited evidence of efficacy in- clude buspirone, carbamazepine, val- proate, trazodone, propranolol, and lithium. benzodiazepines are gener- ally not useful for agitation and may produce paradoxical reactions (in- creased agitation and disinhibition) and cause sedation, falls, ataxia, amnesia, and delirium. cholinergic agents such as the cholinesterase in- hibitors and cholinergic agonists may also be effective for the behavioral dis- turbances. theoretically, the behav- ioral complications may be due in part to altered cholinergic function, ex- plaining why cholinomimetics can improve behavior. there is evidence that the cholinesterase inhibitors such as donepezil, tacrine, and metrifo- nate and the muscarinic agonist xanomeline can improve psychosis and behavioral disturbance in ad. , treatment of insomnia in ad insomnia or sleep-wake cycle dis- turbance is common in ad and oc- curs in up to % to % of pa- tients. this can cause significant distress to family caregivers who are awakened at night and may have to be vigilant to prevent wandering away from home or self-injury of the patient. insomnia often occurs con- currently with other symptoms. treatment of insomnia and sleep- wake cycle disturbance is not well studied in ad. effective strategies in- clude trazodone and zolpidem ad- ministered at bedtime. chloral hy- drate and benzodiazepines should only be used for short-term treat- ment. the benzodiazepine tria- zolam should be avoided due to am- nesia. diphenhydramine should be avoided because of anticholinergic effects. caregiver distress treatment of a patient with ad in- variably also involves treatment of the family, especially the primary caregiver. the emotional, physical, and often financial stresses associ- ated with caring for a relative with ad are enormous. thus, it should come as no surprise that up to % of caregivers suffer from “caregiver burnout.” this may take the form of depression, anxiety, isolation, sub- stance abuse, or physical illness. in- dividual and family counseling and support as well as involvement in support groups can avoid or delay nursing home placement by almost year. these family intervention strategies are most effective in the early to middle stages of the illness, again reinforcing the need for early illness recognition. respite ser- vices can also provide a source of re- lief to family members so that they can have some time for taking care of themselves and renewing social relationships with others. the alz- heimer’s association is an excel- lent source of information on local services such as support groups and respite care. families should be re- ferred to their local chapter for ad- ditional support. conclusions alzheimer disease is the most com- mon cause of dementia and will af- fect a growing number of people as the us population ages. it is now clear that ad is both diagnosable and treatable. because most patients with ad are treated in the primary care arch intern med/ vol , apr , © american medical association. all rights reserved. downloaded from: https://jamanetwork.com/ by a carnegie mellon university user on / / setting, it is important for primary care practitioners to be able to ac- curately diagnose and effectively treat ad. the primary care practi- tioner has multiple roles in the treat- ment of ad. the primary care prac- titioner must accurately diagnose ad and distinguish it from depression, delirium, and other causes of de- mentia. this practitioner must also be prepared to treat the cognitive im- pairment, treat the behavioral dis- turbances, refer to a specialist when there is uncertain diagnosis or dif- ficult-to-manage psychiatric mani- festations, provide education and support to the patient and their fam- ily, help maintain safety in the com- munity, and address long-term care issues. early recognition is important to begin pharmacological therapy at the point in the illness when it can be most effective and to provide edu- cation about progression of the ill- ness, help families and patients an- ticipate the course of the illness, and discuss planning for the future. alz- heimer disease is a diagnosis of in- clusion based on history and clini- cal presentation. a full laboratory and neuroimaging workup is not necessary in every case to rule out other causes of dementia. cognitive impairment may im- prove in the short-term with the cho- linesterase inhibitors tacrine and donepezil. new cholinesterase in- hibitors such as metrifonate and cho- linergic agents such as specific mus- carinic and nicotinic agonists will be available soon. vitamin e and selege- line may slow disease progression. other disease-altering strategies are currently being investigated includ- ing estrogen, nonsteroidal anti- inflammatory drugs, and neuro- trophic factors. behavioral disturbances includ- ing depression, psychosis, and agi- tation are common in ad and are treatable with antidepressants, an- tipsychotics, and other psycho- tropic medications, as well as with acetylcholinesterase inhibitors. the natural course of behavior distur- bance changes with progression of the illness, so patients require re- peated regular reassessment of treat- ment and alteration as appropriate. treatment of a patient with ad also involves treatment of the fam- ily. this includes providing educa- tion and support, referral to the alz- heimer’s association and other support networks, evaluating care- giver burnout, helping assess and maintain safety in the community, and helping families deal with the le- gal issues and with long-term care when and if appropriate. primary care physicians are not alone in treating patients and their families with dementia and ad. spe- cialists should be consulted in atypi- cal or complex cases. neurologic consultation is important for pa- tients with parkinsonism, focal neu- rologic signs and atypical presenta- tions, or course of illness. geriatric psychiatrists should be consulted for difficult-to-treat behavioral or psy- chiatric manifestations. psycholo- gists can provide behavior manage- m e n t , f a m i l y c o u n s e l i n g , a n d functional evaluations. neuropsy- chologists can help clarify uncer- tainties in diagnosis and ascertain cognitive and functional impair- ment. other supports include so- cial workers, attorneys, commu- nity support agencies, area councils on aging, and the alzheimer’s as- sociation. accepted for publication july , . this study was supported by a grant from bayer pharmaceuticals, west haven, conn. we thank francine bray for her help in the preparation of the manu- script. reprints: hugh c. hendrie, mb, chb, department of psychiatry, in- diana university school of medicine, room , clinical dr, india- napolis, in - . references . alzheimer a. uber eine eigenartige erkrankung der hirnrinde. allemeine zeitschr psychiatr psy- chisch gericht med. ; : - . . jorm af, korten ae, henderson as. the preva- lence of dementia: a quantitative 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patients with alzheimer disease: a randomized controlled trial. jama. ; : - . arch intern med/ vol , apr , © american medical association. all rights reserved. downloaded from: https://jamanetwork.com/ by a carnegie mellon university user on / / [pdf] awake fmri reveals brain regions for novel word detection in dogs | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /fnins. . corpus id: awake fmri reveals brain regions for novel word detection in dogs @article{prichard awakefr, title={awake fmri reveals brain regions for novel word detection in dogs}, author={ashley prichard and p. cook and m. spivak and raveena chhibber and g. berns}, journal={frontiers in neuroscience}, year={ }, volume={ } } 	ashley prichard, p. cook, + authors g. berns 	published 	psychology, medicine 	frontiers in neuroscience how do dogs understand human words? at a basic level, understanding would require the discrimination of words from non-words. to determine the mechanisms of such a discrimination, we trained dogs to retrieve two objects based on object names, then probed the neural basis for these auditory discriminations using awake-fmri. we compared the neural response to these trained words relative to “oddball” pseudowords the dogs had not heard before. consistent with novelty detection, we found greater… expand view on pubmed frontiersin.org save to library create alert cite launch research feed share this paper citationsbackground citations methods citations results citations view all figures, tables, and topics from this paper 	 table 	 figure 	 table 	 figure 	 figure 	 figure 	 figure 	 figure 	 figure view all figures & tables 	fmri 	canis familiaris 	caudate nucleus structure 	amygdaloid structure 	thalamic structure 	temporal lobe 	cell nucleus 	subgroup 	name 	acoustic evoked brain stem potentials 	physical object paper mentions blog post scientists chase mystery of how dogs process words when some... neuroscience june news article top stories from medical health news december blog post le déchiffrant canidé (chronique ) cerveau en argot november news article aivokuvat osoittivat, kuinka koirat pinnistelevät ymmärtääkseen puhetta iltalehti november news article weird science: inside the mind of a pooch new zealand herald october news article dogs may understand humans better than we thought, according to researchers the atlanta journal constitution october blog post dogs and words: do they really understand what we’re saying? genetic literacy project october news article do dogs understand us? - vice vice october show more citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency multilevel fmri adaptation for 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for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators blog posts, news articles and tweet counts and ids sourced by altmetric.com terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue italian review of agricultural economics vol. , n. : - , firenze university press www.fupress.com/rearea italian review of agricultural economics issn - (print) | issn - (online) | doi: . /rea- citation: c. de vivo, m. ascani, m. gaito ( ) social farming and inclu- sion in eu esi funds programming. italian review of agricultural econom- ics ( ): - . doi: . /rea- copyright: © c. de vivo, m. ascani, m. gaito. this is an open access, peer-reviewed article published by firenze university press (http:// www.fupress.com/rea) and distributed under the terms of the creative com- mons attribution license, which per- mits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. data availability statement: all rel- evant data are within the paper and its supporting information files. competing interests: the author(s) declare(s) no conflict of interest. short notes social farming and inclusion in eu esi funds programming carmela de vivo, michela ascani, marco gaito crea - centro di ricerca politiche e bio-economia abstract. eu europe strategy identifies fighting against poverty and marginaliza- tion as a key objective, with an attention to active inclusion in society and in the labor market of the most vulnerable groups. the paper aims at outlining the evolutionary framework of eu policies in the field of social inclusion and at analyzing the novelties introduced by the european structural and investment (esi) funds - . a spe- cific focus is dedicated to social agriculture (sf) interventions, which generate social inclusion and innovation with benefits in rural and peri-urban areas and in society as a whole. it is still too early to assess the impact of rdp-funded interventions, as the investments are still ongoing. the analysis of the sf resources highlights a wide range of policy and programming choices. keywords: social inclusion, social farming, multifunctional agriculture, eu policies, esi funds, rural development. jel codes: o , i , i , o . . introduction and methodology one of the objectives of the eu europe strategy is fighting against poverty and marginalization, with a special attention to active inclu- sion of the most vulnerable groups in society and in the labour market and overcoming of discriminations and integration of people with disabilities, ethnical minorities, immigrants and other vulnerable groups. in this poli- cy context, social farming (sf) has been explicitly pointed out in the - programming documents as a tool for addressing social inclusion and achieving the abovementioned goal. starting from a definition of sf as innovative opportunity of services delivery, able to address the need of services coming from individuals and communities, and of diversification of agricultural activity, enabling farmers both to integrate their income and broaden their role in local communities and society as a whole, in the framework of the theoretical context of mul- tifunctionality of agriculture, we assume that the adoption at eu level of a cross-cutting approach to social inclusion policies represents a policy innova- tion generating social innovation. coordination of different policies relevant to sf at eu, national and regional level has been recently recommended by carmela de vivo, michela ascani, marco gaito the european economic and social committee (eesc). the paper will outline, through a desk analysis, the evolutionary framework of eu policies on social inclu- sion and analyze both the novelties introduced by the - programming with reference to the european structural and investment (esi) funds and their imple- mentation in italian programming documents. in this framework, in order to better define the political frame- work for sf in europe and italy, the paper reports the results of an analysis carried out in on - italian rdps, highlighting the political choices made in the planning phase, and comparing them with the partial results emerging by calls released at june by the italian regions. the analysis, focusing on the eu programming in the field of social inclusion, will start with the exam of partnership agreement (pa) for italy, acknowledging the intimate link between eco- nomic and social policies and defining thematic objec- tive “promoting social inclusion, fighting poverty and discrimination”. a specific focus will be devoted to the italian case, with the outcomes of an analysis of - rural development programmes (rdps) and of a lag experience; the latter represents a best practice in the integration of eu funds for social inclusion. social inclusion generated by sf expands its effects both in rural and peri-urban areas interested by sf initiatives and in society as a whole. . results: social inclusion and social farming (sf) in eu policy . . policy context and theoretical framework social inclusion is on the eu and member states agenda since the s, with maastricht treaty and the structural funds and the establishment of the europe- an observatory on policies to combat social exclusion. the historical eu approach to social inclusion is one of «cohabitation» and balance between competitiveness and social in the broad sense. social inclusion, in the predominant sense of participation, of integration into society, is also at the base of many policies’ design: core elements of rural development policy are participation, networks, partnerships and multi-level governance. it is also very much related to the logic of cohesion at the base of eu structural funds (shortall s., ; shortall s., warner m.e., ), now eu structural and invest- ment funds (esi). in - , the approach to eco- nomic, social and territorial cohesion in the eu is rein- forced, coherently with europe strategy, by setting common rules for esi funds, in order to better coor- dinate and harmonize the implementation of cohesion policy. the eu regulation / defined «common provisions regulation» (cpr) , foresees the organization of partnerships for each member state and for each pro- gramme, in order to ensure respect for the principles of multi-level governance; these partnerships are open to all public, private and third sector components, includ- ing bodies responsible for promoting social inclusion. the theme of social inclusion and fight against pov- erty is then addressed in the single funds: esf supports, among others, disadvantaged people, people facing pov- erty and social exclusion, actors in the social economy; erdf, among other, finances social infrastructures; eafrd focuses on social farming. sf is a complex body of practices integrating various activities (social, care, educational, etc.) into farming and promoting, among other goals, social inclusion. sf uses agricultural farms and their components as landscape, animal, plants, as a base for promoting human mental and physical health, as well as quality of life, for a variety of client groups (lanfranchi m. et al., ; scuderi a. et al., ; steigen a.m. et al., ). people with disabili- ties, also intellectual ones, benefit from the practice of sf, becoming part of a social community, working in a farm and establishing relationships with farmers. all these aspects confirm the role played by sf in the development of relational and professional skills in adults with cogni- tive disorders (torquati b. et al., ). sf represents an innovative, multi-actor and mul- tidisciplinary approach to different levels (social, eco- nomic) of problems in eu territories; it can contribute to the definition and implementation of new pathways of change in rural and peri-urban areas, being an alter- native way for delivering innovative and effective social services, with effects on individuals, farmers, local com- munities (lanfranchi m. et al., ). in terms of inclusive effects, apart from «direct» inclusion towards service-users, sf can become an ele- ment of inclusive development for the whole society due to its characteristics: it uses a community-based develop- ment approach, it is based on networking and collabo- ration between different stakeholder groups, as farmers, disadvantaged people, social/health professionals, local communities, policy makers and administrators (di iac- ovo f., o’connor d., ). the propensity for inclusive development can be found in consumers positive atti- tude in terms of willingness to pay a higher price for sf products. the aim is to ensure firms economic sustain- ability, to reinforce positive social externalities generated by agriculture, to bring advantage to the whole society (torquati b. et al., ). reg. (eu) / of the european parliament and of the council of december . social farming and inclusion in eu esi funds programming the emergence of this phenomenon has originated a broad variety of practices and definitions: social farm- ing, green care, care farming, farming for health, etc., involving both different type of farms (institutional/ public, ordinary, care farms, etc.) and different specific target groups as youth, children, disabled, prisoners, refugees, elderly people, unemployed, but also the broad population living in rural and urban areas (dessein j. et al., ; leck c. et al., ; scuderi a. et al., , steigen a.m. et al., ). from a theoretical point of view, the relatively new social function recognized to agriculture is closely related to the acknowledgement of the multifunctional role of agricultural activity (dessein j. et al. ; lanfranchi m. et al., ; scuderi a. et al., ; zasada i., ). sf can potentially further broaden, diversify and add value to multifunctional agriculture, by interlacing farming with welfare services and creating both new markets for farmers (di iacovo f., o’connor d., eds., ). sf originates in a context of changes in lifestyles and economic crisis and generates benefits in terms of inclusion, going beyond the borders of rural territories and reaching european peri-urban and urban areas. with austerity measures and partial shift of responsibil- ity from public actors and governmental support to pri- vate business and citizens, new opportunities in terms of social innovation are offered by collaboration and new alliances, new governance approaches towards public- private partnerships promoting social inclusion (bock b., ; garcía-llorente m. et al., ; shortall s., warner m.e., ). social innovation is thus related to self-organization and bottom-up initiatives, partly origi- nating from the need for viable alternatives to poor pub- lic services in the eu; expectations on social innovation in particular are based on the idea that public-private forms of partnerships and development of community- based services can help overcoming the existing limits of eu welfare systems (bock b., ; hassink j. et al., ; maino f., ). sf shows many features involving social innovation: it is a form of diversification of agriculture into social activities and functions, able to deliver services both to direct beneficiaries and to support rural and urban inhabitants and community in general. also, social innovation transcends the boundaries of specific places and involves actors and networks going beyond the local and the rural, including urban and peri-urban. the role of social farming as innovative opportuni- ty for the farm of diversification of agricultural activity and providing services and benefits to individuals with specific needs, local community and broad population, territories and their development is recognized both by literature and policy (dessein j. et al., ; lanfranchi m. et al., ; tulla f. et al., ). . . social farming in the framework of the eu - cohesion policy the theme of sf in europe has emerged in the last two decades, starting with the institution of «farming for health», a community of practices of researchers and scholars from european countries, whose outcomes have influenced the opinion of the eu economic and social committee (eesc) on the topic «social farming: green care and social and health policies» . the eesc, stating the need of «a definition at european level in order to identify the activities that comprise it and to define a framework and criteria, including quality crite- ria…» believes that «eu institutions and various regional and national authorities should support social farming putting in place an appropriate regulatory framework». sf represents an opportunity in europe to affirm a sustainable and innovative model of agriculture and of participated welfare; it is an integral part of the europe strategy, identifying social integration as one out of the objectives for an intelligent, sustainable and inclu- sive growth. the - partnership agreement (pa) for italy , national programming instrument of european structural and investment (esi) funds, including the european agricultural fund for rural development (eafrd), defines strategy and priorities for pursu- ing the goals of europe . with thematic objective «promoting social inclusion, fighting poverty and discrimination», pa acknowledges the intimate link between economic and social policies, also identifying strategic lines of interventions pertinent to each fund. according to identified priorities and needs, pa fore- sees some particularly interesting actions: promotion of social inclusion through active inclusion and job place- ment, reinforcing offer and improving quality of territo- rial social and health services, reinforcing social econo- my. the abovementioned principles are outlined in the eu regulations setting rules for esi funds; in particu- lar, eafrd regulation sets as one of the priorities to european economic and social committee, opinion of the european economic and social committee on «social farming: green care and social and health policies», ( /c / ). commissione europea, «accordo di partenariato» con l’italia sull’uso dei fondi strutturali e di investimento per la crescita e l’occupazione nel - , c( ) final «decisione di esecuzione della commis- sione del / / che approva determinati elementi dell’accordo di partnenariato con l’italia». reg. (eu) / of the european parliament and of the council of december on support for rural development by the euro- carmela de vivo, michela ascani, marco gaito be pursued in - «social inclusion, reduction of poverty and economic development in rural areas». in the intention of european policy makers, agricultural firms are increasingly called to implement and provide ser- vices for civil society; these services are both environmental, focused on territories and their management, and social. also, the social investment package (sip), adopted by the european commission (ec) on th february , aims at stimulating member states (ms) to main- tain investments in social policy areas, as the enhance- ment of people’s capacities and the support to their par- ticipation in society and in the labour market. following a network logic, connecting agricultural sector, social and health services and training sector, the european social fund (esf) also devotes attention to the theme of sf. the inclusion national operational programme ( % of esf financial resources), among the actions foreseen against poverty and social exclusion, considers coordination with eafrd to be relevant, with specific reference to sf interventions; similar coordination and collaboration possibilities are present in erdf. finally, considerable importance is attached to social inclusion in the eu rural development policy since - (shortall s., ), with eafrd addressing sf as instrument of diversification of farms also into social activities, mostly in axis measures dealing with qual- ity of life in rural areas and diversification of rural econ- omy. in the period - the theme of the social functions of agriculture becomes more relevant, putting a stronger accent on policies for social inclusion and in particular on the role of agricultural activities. in conclusion, sf, following a logic of cooperation with social and health institutions and with the syner- gic support of eu funds, can represent a model of social and organization innovation. this path is supported by the eu - regulations, that have created the conditions to foster sf practices and better define sf activities in european territories. . . social inclusion in italian - rural develop- ment programmes as reported in literature (cfr. . .), the context of sf in italy, confirmed by an analysis carried out on the italian rural development programmes (rdps) in , pean agricultural fund for rural development (eafrd) and repealing council regulation (ec) no / . ministero del lavoro e delle politiche sociali «programma opera- tivo nazionale inclusione - » decisione della commissione c( ) . ascani m., de vivo c. ( ), «l’agricoltura sociale nella nuova programmazione / », crea, centro politiche e bioecono- is that of the increasing demand for services and func- tions related to agriculture and of the growing potential for the offer of socio-educational and welfare services in agricultural firms. many rdps underline the social role of agriculture and express the specific need of sup- porting the diversification of farm activities towards the offer of welfare services, giving sf the role of stimulating inclusive development (di iacovo f., o’connor d., ). interventions affecting sf are programmed in vari- ous rdps measures. italian regions, with only one exception, have foreseen sf among the interventions that can be financed, with a relevant variability among pro- grammes, devoting to the theme a more specific atten- tion with respect to the - period, coherently with the current eu cohesion policy framework. sf is described as: opportunity of social inclusion, innovation and instrument of social and economic devel- opment in rural areas, with benefit for rural communities; creation of networks between farmers and social coopera- tion operators; expansion of diversification and opportuni- ty for farmers to deliver complementary services related to agriculture; opportunity of income and employment both for firms and new operators. sf is perceived as a social innovation that can enable agriculture to become instru- ment of welfare for the benefit of rural communities. sf is predominantly programmed within rural development priorities a and a . measures giving a major contribution to sf are: m «co-operation», with sub measure . «diversification of farming activities into activities concerning health care, social integra- tion, community-supported agriculture and education about the environment and food», specifically addressed to sf; m «farm and business development», in particu- lar with sub measure . «investments in creation and development of non-agricultural activities», dedicated to diversification. the last has been activated by all the ital- ian regions, apart from the province of bolzano, show- ing the political relevance given by regional authorities to diversification of agricultural activity for the territori- al development of rural areas. in valle d’aosta sub meas- ure . is activated but dedicated to agritourism. among the possibilities of intervention for sf and mia. document published in www.reterurale.it, april , roma, in the framework of the project «promozione e supporto alla diffusione dell’agricoltura sociale», italian national rural network - . the italian rdps have been fully analyzed with specific focus on sf, starting from swot analysis, and continuing with priorities and focus areas and strategy. «improving the economic performance of all farms and facilitating farm restructuring and modernization, notably with a view to increas- ing market participation and orientation as well as agricultural diversi- fication». «facilitating diversification, creation and development of small enter- prises, as well as job creation». social farming and inclusion in eu esi funds programming related services for social inclusion, the most innovative and targeted is sub measure . , foreseen by rdps, that can be seen as a cooperative form of diversifica- tion of agricultural firms; it is also a specific support to different actors involved into providing social services, implemented through a form of cooperation for sf. it specifically addresses the promotion and implementation of social and welfare services by a variety of forms of partnerships. in particular, the sub measure foresees the cooperation among agricultural firms and public, pri- vate, third sector entities for the development of social welfare, therapeutic, educational and training, recrea- tional, job placement activities. in june , regions issued calls for sub meas- ure . , with differences and peculiarities related to the territories and their characteristics and to the degree of experience on the subject of sf: regions issued calls for sub measure . , with specific interventions on sf. it is early for verifying the impacts of the financial resources granted, being investments not yet concluded. the following table highlights the implementation of . and . in italian rural development programmes: all the regions planned in their rdps at least . or . . calls have been issued on both sub measures, but . until now has found a minor implementation, the financial weight of both . and . on the whole and , with reference to the calls, strongly var- ies between regions, highlighting different strategic and planning choices. furthermore, within m «basic services and village renewal in rural areas», in some cases investments of sub measure . «investments in the setting up, improvement or expansion of local basic services for the rural popula- tion, including leisure and culture, and the related infra- structure» aim at establishing or enhancing the offer of welfare services, creating a possible link with social farming. a space for growth of sf in rdps - can finally be traced in transversal measures «knowl- edge transfer and information actions» and «advisory services, farm management and farm relief services», referring to diversification and/or multifunctionality in many cases, and to socio-cultural aspects of agriculture, tab. . implementation of sub measures . and . in italian rdps to june . regions sub measures . . programmed nr. calls % of . resources on m. total programmed nr. calls % of . resources on m. total piedmont x , x , valle d’aosta -- --     lombardy x x , trento -- x     bolzano -- x     veneto x , x , friuli venezia giulia -- x , liguria x , x , emilia-romagna x , x , tuscany x , x , umbria x x , marche x , x , lazio x x , abruzzo -- x     molise -- x , campania x , x , apulia -- x , basilicata x x     calabria x , x , sicily x , x , sardinia x , x , source: our elaboration on italian rdps calls, / / , in www.reterurale.it. carmela de vivo, michela ascani, marco gaito services to the population in rural areas and social farm- ing in some cases. . . a leader best practice on agriculture for social inclu- sion: the sulcis lag social farming is a complex of practices integrating social, care, educational and other activities into agri- culture, with several aims and recipients: cooperation between different actors, sectors and areas is therefore fundamental; the same cooperation is a peculiarity rep- resenting an innovative, multi-actor and interdiscipli- nary approach to several orders of problems. the italian lag sulcis iglesiente capoterra e cam- pidano (sulcis), in cagliari, sardinia, is an example of networks created for supporting sf and an interesting experience of use of eu funds for social inclusion and of promotion of territorial cohesion for answering to a part of population expressing a growing need of citizen- ship and inclusion. the project «agrisociale: coltiviamo cittadinanza» started in various participatory paths at transna- tional, regional and local level. sulcis lag, in par- ticular, created a local network of actors dealing with sf. setting up a participatory process, together with specific training seminars, have been fundamental aspects of the project. in order to facilitate interaction between the actors involved, specific methodologies have been adopt- ed, allowing mapping actors and skills operating on the territory, knowing the needs expressed by local commu- nities and possibilities offered by the rdp, activating a network between sf operators. at the beginning, municipalities have been select- ed with a lag public call, in order to manage financial resources aimed at creating social farms. then, agricul- tural firms and social cooperatives have been selected, with a second call issued by municipalities, in order to offer sf services to population. this process started the local project «serenamente», involving municipalities, social cooperatives and agricultural firms. the participatory process resulted in the identifi- cation of the focus on social inclusion of people with disabilities, in particular mental ones. the project allowed the construction of paths of social inclusion, both through training sessions and specific workshops directly related to agricultural firms and activities; this local experience was based on the creation of an active space for subjects who were forced to live predominantly between the home walls, giving them and their families, a new perspective made of dignity and participation. the project has moreover developed other local and transnational activities: at local level, thanks to an agree- ment with the ministry of justice, activities had detain- ees as target group; at transnational level, in collabora- tion with other italian and finnish lags, a document was developed, defining the social farming principles underlying actions of inclusion in social farms. the end of - programming period did not conclude the local social farming experience, since other projects were launched in the territory, as a social garden (st’orto) created by giba municipality, where young people carry out agricultural activities with the support of some local farms. the project «agrisociale: coltiviamo cittadinanza», through a participatory approach, has led to the follow- ing results: - participatory paths (local, at lag level, regional and transnational); - transnational sf principles chart; - boys in social inclusion laboratories; - boys in pet therapy laboratories; - social garden; - enterprise network, «bio rete terra sarda»; - internships for mentally disabled boys in farms of the network. in the current period sulcis lag has foreseen in its local development plan measure . dedicated to social farming; the objective is to develop the past expe- rience, overcoming some critical issues and with the aim of involving a greater number of actors, first of all local authorities, farms and cooperatives. in lag’s intentions, there is the will to pay a par- ticular attention to other weak components of local community, as women and workers over , who could find work placement thanks to sf activities. the sulcis lag experience shows the start-up and development, with a bottom-up process, of a participa- tory path based on the inclusive nature of agricultural activities. it also highlights that sf in rural areas, espe- cially in marginal ones, can stimulate local economy and play a role of «relational catalyst» among commu- nity members. furthermore, policies for inclusion play a propulsive role in starting participatory processes and in building networks that answer to needs expressed by local communities and in particular by weak groups of population. . conclusions in the european political and scientific debate, the theme of social inclusion has gained a primary role and this attention has been translated into a eu regulatory framework identifying objectives, tools and modes of intervention. social farming and inclusion in eu esi funds programming social farming (sf), incorporated into eu regula- tions, partnership agreement and national and regional programmes, represents one of the instruments con- tributing to active inclusion. sf activities can therefore represent a social innovation laboratory, where network logic and interconnection among funds allow the imple- mentation of complex interventions, requiring synergies among policies, actors and territories. an integrated use of policies and funds and their proper coordination, also recommended by the europe- an economic and social committee, represents a policy innovation generating social innovation. public policies and support aimed at enhancing social and territorial cohesion processes are crucial both to answer the grow- ing need of weak components of society and to create virtuous development paths for local economic systems. it is therefore essential to intervene with a network logic among funds, in order to implement an integrated and multidisciplinary approach. the analysis carried out on the policy and regula- tory framework descending by europe strategy shows the opportunities provided by specific lines of intervention for social inclusion in esi funds and their implementing programmes. italian rdps extensively recognize the requirement of increasing the diversifica- tion and the multifunctionality of firms and of improv- ing services to population in rural territories; many rdps explicitly underline the social role of agriculture and express the specific need of supporting the diver- sification of farm activities towards providing welfare ser vices and creating synergies between agriculture and social, as welfare instrument in rural areas. never- theless, up to now, a substantial delay in the implemen- tation of programmes has to be pointed out; with spe- cific reference to eafrd, there is a weak correspond- ence between targeted provisions for social inclusion in rdps (mainly within sub measures . and . ) and in related public calls, devoting poor specific funding to sf. almost all of the regions that have planned inter- ventions for sf have issued the related calls, with spe- cific aspects depending on the territory and on existing sf realities. it is still too early to evaluate the impact of the resources provided by rdps, being investments still ongoing. from the analysis of the resources for sf, delivered under sub measures . and . , with refer- ence to the total financial amount of measures and , a wide range of strategic and programming choices does emerge. given the importance of interdisciplinarity in sf actions, a negative element that can be found in the current implementing phase is the lack of a multi-fund approach, with a few exceptions in the management of regional funding to leader projects. in the case of lead- er, this critical issue is indeed partially overcome by the possibility given to lags of participating in other funds and their measures, activating the necessary synergies, as in the case of sulcin lag. in conclusion, despite its spreading in europe in terms of practices, the attention devoted to it by researchers and the policy and regulatory framework outlined by the eu, sf is still partially supported by an adequate legislative and operative definition. a develop- ment and consolidation opportunity for sf experiences in italy is represented by the issue of a specific national law in , whose implementing regulation has been issued in december , creating the conditions for its implementation. references ascani m., de vivo c. 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( ). multifunctional peri-urban agriculture – a review of societal demands and the provision of goods and services by farming. land use policy, ( ): - . doi: . /j.landusepol. . . . humanities & social sciences reviews eissn: - , vol , no , , pp - https://doi.org/ . /hssr. . |www.hssr.in © volkova et al. the resocialization process of elderly and disabled through club activities in institutional care olga А. volkova * , oksana v. besschetnova , Еlena i. mozgovaya , yuliya s. artyomova , irina e. nadutkina , , , belgorod state university, belgorod, russia, balashov institute of saratov state university, department of education and psychology, russia. email: * volkovaoa@rambler.ru article history: received on st august , revised on th september , published on rd november abstract purpose: the article presents the results of sociological research on the issues of the re-socialization of elderly and people with functional limitations and health problems through club activities, based on the example of five institutions (boarding houses for the elderly and disabled) located in belgorod region. methodology: the study was conducted in and included two stages: ( ) the survey of elderly and disabled, living in institutional care (n = ) and ( ) the expert survey (n = ), including employees and the administration of boarding houses for the elderly and disabled. result: the research found that the successful re-socialization of the elderly and disabled living in residential institutions depends on a combination of factors: the social infrastructure of the institutional care, health status, interpersonal relations with the staff, the range of social connections, as well as the diversity of leisure facilities and their own activity. the results of the study suggest that the involvement in the club activities of the elderly and disabled, living in residential institutions will become a significant resource for their re-socialization process. applications: this research can be used for universities, teachers, and students. novelty/originality: in this research, the model of the resocialization process of elderly and disabled through club activities in institutional care is presented in a comprehensive and complete manner. keywords: re-socialization, elderly, people with disabilities, club activities, boarding schools. introduction currently, the growth of aging and disability of the population is the global problems of mankind. the complexity of solving these problems is due to the incompletely resolved social, economic, cultural, and medical issues for creating optimal living conditions for the elderly and disabled. the elderly is a rapidly growing socio-demographic group of the population, not only in russia but also in many countries of the world, which is associated with the process of rapid aging of the population. in in our country there were , thousand people over working age or . % of the total population (compared to - , thousand ( . %), in – , thousand ( . %). according to rosstat, in , . million disabled people were registered in russia ( . % of the country's population), of which . million men and . million women; . million have the second group of disability, the third group – . million people, the first one – . million people (federal state statistics service, ). thus, the relevance of the study is due to the increase in the number of people with disabilities and the elderly and the severity of problems that need to be addressed. in this context, elderly and disabled, living in institutional care deserve special attention, in particular, the process of their re-socialization in boarding schools’ conditions, including the assimilation of new social roles, skills, habits instead of the former ones, due to fundamentally different social situation. the possibility of active participation and integration into social processes is an important part of the process of re- socialization of the elderly and people with disabilities living in institutions, which directly affects the quality and satisfaction with the life of this social group. italian researchers identified a number of factors affecting the life satisfaction of people with disabilities in italy. among others were household structure, health, education and the type of disability; less important were income and personality characteristics. the stress was given to the social support of people with disabilities in everyday life, which increased the level of life satisfaction with economic conditions and leisure time; older disabled people were on average more satisfied with life than their younger counterparts (addabbo, sarti & sciulli, ). the study, made by d. anaby, w.c. miller, t. jarus, j.j. eng, l. noreau, based on the research of elderly with chronic diseases in canada, confirmed that active participation in social life, the necessary social support had a significant impact on the level of life satisfaction (anaby, miller, jarus, eng & noreau, ). based on a content analysis of articles on the management of residential care institutions for elderly and disabled in finland, a. hujala, k. kokkonen, s. rissanen concluded that efforts should be directed to solving the problems of integrated care, productivity, information and communication technology and division of labor; to enhancing the role of humanities & social sciences reviews eissn: - , vol , no , , pp - https://doi.org/ . /hssr. . |www.hssr.in © volkova et al. science in the process of developing and implementing social policies; to increasing the competence and proficiency of professionals, leaders and politicians (kokkonen, rissanen & hujala, ). nowadays, the issues related to the elderly and disabled are actively discussed in modern russian scientific literature: the analysis of social adaptation mechanisms (kornilov, ; shanina, ); the features of the socio-psychological problems of elderly and people with disabilities living in boarding schools (barsukov, .; kiseleva & bobik, ); the use of social therapy methods with these categories of clients (volkova, naberushkina, bystriantsev, baharev, nadutkina & sadovski, ); the organization of free time as a factor of their socio-cultural adaptation process (elyutina & chernyshkova, ); the identification factors, contributing/impeding to the social integration of individuals into the socio-cultural environment (volkova, chefonova, mozgovaya, besschetnova, zhirov, & nadutkina, ). methods the case study was conducted in january-april in five residential institutions for the elderly and disabled in belgorod region. the research included two stages. on the first stage semi-structured interviews with elderly and people with disabilities living in institutions (n = ) were conducted. in the second stage the expert survey was held; the experts were chosen among the staff and the administration of institutional care for elderly and disabled (n = ). during the semi-structured interview, we investigated the main aspects of the institutional elderly and disabled care that had a great influence on their well-being and re-socialization process: the quality of social services, relationships with residents and staff, leisure opportunities, the participation in club activity, social and psychological problems. the methodological basis of the study was: ( ) the concept of disability as a limitation of the ability to carry out activities that were considered normal for a healthy person (international classification of functioning, ); ( ) the concept of health-dependent human life (world health organization, ); ( ) the concept of the mediated influence of the type of activity and the broaden specter of the social integration of disabled on his/her subjective well-being (green & vice, ). results and its discussion the case study involved residents of institutional care aged - ; there were women and men. the results of the study showed that % of respondents had general secondary education, secondary professional education – %, incomplete higher education – %, and complete higher education – %. the research showed, that % of participants gave a positive assessment of social services in institutions, % of them were satisfactory, and only % were unsatisfactory. in addition to that, % of respondents noted a high level of safety and comfort of living in the institution, % rated it as low and % could not answer. in our opinion, physical, psychological, social and economic well-being as well as the re-socialization process of the elderly and disabled was closely interrelated and largely depended on their health, frequency, and intensity of socio- cultural activity. according to the research, % of informants rated their state of health as “satisfactory,” % – “unsatisfactory”. the majority of respondents ( %) are generally satisfied with the quality of social services and professionalism of the staff. at the same time, the survey helped to reveal the most vulnerable areas related to the vital activity of the elderly and disabled as shown in table . table : actual issues of residents’ life satisfaction in institutional care n measurement parameters score, % relationships with staff relationships with other residents quality of treatment, medical care food, living conditions leisure time insufficient technical equipment the majority of those living in institutional care stated that the main issues for newcomers were interpersonal relations with other residents as a result of conflict situations, misunderstanding, and poor communication skills. at the same time, % of them expressed readiness to make efforts to adapt to new living conditions, despite these difficulties. at the same time, % of respondents characterized the institutions’ staff as polite, friendly, and attentive to clients’ needs; however, % of the elderly and people with disabilities noted the difficulties in communicating some specialists. nevertheless, % of respondents tended to avoid conflicts, believed that they needed to foster “patience and endurance”; % of them stated that mutual and moral support, cohesion was the bases of the communication of residents in institutional care. an important factor in the re-socialization of the elderly and disabled was the possibility of fruitful leisure activities and the realization of their professional abilities. the residents claimed that the greatest pleasure they got from the leisure, humanities & social sciences reviews eissn: - , vol , no , , pp - https://doi.org/ . /hssr. . |www.hssr.in © volkova et al. complete rest – %; independence from other people – %; respect, caring for others – %; communication with like- minded people – %; being necessary and useful – %, doing usual things – %, and having good health – %. in all surveyed institutions for elderly and people with disabilities, % of respondents highly appreciated leisure opportunities while % of them gave it a negative assessment. there were some clubs: “learning to draw”, “making clay”, “entertaining cooking”, “puppet theater”, “fishing in our pond”, “wicker weaving “, “beading “. in addition, there were libraries, board games (chess, checkers, billiards), as well as knitting and sewing. according to the research, % of the elderly and people with disabilities living in institutions took part in one or other club activities. however, watching tv and reading books were the most common leisure activities according to % of respondents; % of them were engaged in gardening, floriculture, growing vegetables. the main motives of participation were presented in table . table : the main reasons for the participation of elderly and people with disabilities living in institutional care in club activity n motives score, % awareness of their usefulness, need for people interests, the satisfaction of aesthetic needs the manifestation of ability, talent pastime, memories of the past however, almost half of the respondents ( %) had opportunities to spend their free time outside the institutional care. the rest did not consider such a possibility for the following reasons: the lack of financial resources, poor health, difficulties in movement due to the lack of a barrier-free environment in most localities. information on various aspects of life is an important part of the social adaptation of the elderly and people with disabilities living in institutions. according to this, % of residents indicated that they received up-to-date and timely information, % and % of respondents referred to limited access and one-sided information respectively, % said they had incorrect and outdated information. in most cases, older people and people with disabilities needed information about health, medicine updates – %, upcoming cultural events – %, educational and entertainment information – %, pensions – %, and public and religious organizations – %. in order to obtain an objective opinion on the quality of life of the elderly and people with disabilities in the conditions of institutional care, an expert survey was conducted at the second stage. the experts were the staff and the administration of five residential homes located in belgorod region (n = ). most experts ( %) agreed that many forms of leisure required financial expenses; they indicated the fact that the institutions were in dire need of acquiring a minibus for greater mobility of elderly and people with disabilities in order to expand their opportunities to attend cultural events in the place of living/ the experts drew attention to the necessity to develop a system of social partnership in addressing the problems of older people and disabled living in institutional care. almost half of the respondents ( %) expressed their wish to diversify the forms of their leisure through participation in club activities. in particular, % of residents suggested creating a fitness center or a health club, for example, a club for nordic walking enthusiasts. in addition, % of respondents declared their readiness to take computer literacy courses to get better communication skills on the internet. according to the expert survey, the most crucial issues of older people and people with disabilities living in institutional care were deterioration of health, loneliness, and social exclusion, loss of the meaning of life, poor interpersonal communication, and dependence of others. % of experts emphasize the importance of the individual approach in social work with elderly and disabled, taking into account their age, psychological, social, socio-cultural characteristics. more than half of experts ( %) agreed that the re-socialization process of elderly and disabled would be more effective if the club activities were improved by expanding the range of its areas, including inviting interesting people; providing library and game activities (checkers, chess, cards, etc.); making discussions on different topics; activating of educational activity of residents, especially encourage them using internet rescores; making clients to do physical exercises (walking, breathing exercises, aerobics); participating in singing, theater classes and workshops (drawing, modeling, wood carving, painting on clay, sewing, and embroidery) as well as concert, festivals and exhibition activities outside the institutions. according to experts’ opinion, in order to improve the participation of elderly and disabled living in institutional care in club activities, it is necessary: first, to conduct regular independent research to find out clients’ needs, interests, and targets ( %); secondly, to increase funding for the residential institution ( %); thirdly; to create the social infrastructure of these categories of people ( %); fourth, to build a system of social partnership by establishing links with ngos, charitable organizations and sponsors ( %); fifth, to expand opportunities to participate in cultural and social life ( %). conclusion according to the world health organization, % of disabled (more than million people) live in poor countries where there are not enough conditions to meet most of their basic needs. humanities & social sciences reviews eissn: - , vol , no , , pp - https://doi.org/ . /hssr. . |www.hssr.in © volkova et al. currently, in russia, as in most countries, caring for the elderly and people with disabilities is the prerogative of family members, relatives, and other informal caregivers. at the same time, the creation of comfortable and safe living conditions for these categories of clients is a difficult problem due to the moving of young family members to cities and megalopolises for education, employment, starting a family, etc. this is one of the reasons for placing elderly and people with disabilities in specialized institutional care. estimation results show that the successful re-socialization of elderly and people with disabilities living in residential institutions depends on the social infrastructure of the institution, health, interpersonal relations between residents themselves as well as relations with the staff, social connections with family members or friends, the possibility of active leisure, and the involvement in social and cultural activities. there are several ways to increase the level of the rehabilitation process of elderly and people with functional limitations and health problems in institutional care. among them: gardening, occupational, art, and pet therapy; 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lactation curve and effects of milking regimen on milk yield and quality, and udder health in martina franca jennies (equus asinus). | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /jas. - corpus id: lactation curve and effects of milking regimen on milk yield and quality, and udder health in martina franca jennies (equus asinus). @article{dalessandro lactationca, title={lactation curve and effects of milking regimen on milk yield and quality, and udder health in martina franca jennies (equus asinus).}, author={a. d’alessandro and g. martemucci}, journal={journal of animal science}, year={ }, volume={ }, pages={ - } } 	a. d’alessandro, g. martemucci 	published 	biology, medicine 	journal of animal science three experiments were conducted on martina franca jennies. experiment tested wood's model for evaluating the lactation curve. data from the entire lactation period of jennies were used. the results showed that wood's model was able to recognize the shape of the lactation curve from pooled data (r( ) = . ; p < . ), with the lactation peak occurring at d. individual curves showed wide variability. experiment aimed to evaluate the effects of the daily number of milkings ( , , or … expand view on pubmed animalsciencepublications.org save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations results citations view all figures, tables, and topics from this paper 	 figure 	 table 	 figure 	 table 	 table 	 figure 	 table 	 table 	 table 	 table 	 table view all figures & tables 	lactation 	udder 	milk (body substance) 	lactose 	esthesia 	tritium 	cell count 	platelet glycoprotein , human 	diploid cell 	fatty acid glycerol esters 	circadian rhythms citations citation type citation type 	all types 	cites results 	cites methods 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alternative medicine (cam) use reduce negative life impact of headaches for chronic migraineurs? a national survey lee et al. springerplus ( ) : doi . /s - - - r e s e a r c h does complementary and alternative medicine (cam) use reduce negative life impact of headaches for chronic migraineurs? a national survey jieun lee , amrita bhowmick and amy wachholtz * abstract background: chronic migraine is a disabling condition that impacts multiple aspects of migraineurs’ lives. although pharmacological treatments can help to treat the pain associated with migraine headache, chronic migraineurs often experience side-effects of pharmacological treatments. those experiences may contribute to the observed growth in complementary and alternative medicine (cam) use among migraineurs. relatively little is known about the patterns of cam treatment and the characteristics of chronic migraineurs. therefore, the purpose of the present study is to investigate the characteristics of chronic migraineurs who use cam treatment and the relationship among satisfac- tion with current cam use, negative life impact, migraine outcomes, and psychiatric comorbidities among chronic migraineurs. methods: participants were recruited from a well-known online migraine headache resource. all participants were us adults aged years or older. migraineurs are referred to this website through various routes (e.g., referral from healthcare providers, internet search, obtaining information from research papers, personal invitation from other users, and information shared on social media etc.). participants completed a -min self-report-survey in the spring of . results: almost half of the participants reported that they are currently using more than three different cam treat- ments even though the majority of the participants reported neutral or dissatisfied with their current cam treatment. chronic migraineurs who use cam treatments were more likely to experience prolonged or frequent migraine head- aches (p = . , η = . ), and experience greater negative life impact from their headaches (p = . , η = . ) compared to non-cam users. cam treatment satisfaction was inversely related to the number of psychiatric comor- bidities, frequency of migraines, and number of migraine symptoms (p’s < . ). however, cam treatment satisfaction was more strongly correlated with migraine outcomes than psychiatric comorbidities. conclusions: chronic migraineurs often pursue multiple cam treatments in spite of low levels of satisfaction with those treatments. patients who experience relief from traditional treatments are less likely to seek the out additional cam treatments. thus it is often the sicker migraine patients who use cam. more attention is needed to consider migraine treatment resistance, and psychological factors in planning the treatment of chronic migraineurs as those factors may play an important role in treatment choices by patients. keywords: chronic migraineurs, cam treatment satisfaction, psychiatric comorbidities, migraine outcomes, negative life impact © the author(s). this article is distributed under the terms of the creative commons attribution . international license (http://creativecommons.org/licenses/by/ . /), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. open access *correspondence: amy.wachholtz@ucdenver.edu department of psychology, university of colorado denver, denver, co , usa full list of author information is available at the end of the article http://creativecommons.org/licenses/by/ . / http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf page of lee et al. springerplus ( ) : background migraine headaches are a common health condition which affects more than  % of the global adult popula- tion (adams et  al. ). in the us, .   % of us adults were affected by migraine or severe headaches (burch et al. ). migraine is a disabling condition that impacts not only productivity and attendance at work or school, but also quality of life at home. pharmacological treatments of migraine headaches can help to relieve the pain and symptoms associated with migraine headache. however, migraineurs often experi- ence side-effects of pharmacological treatments and fre- quent use of medications can lead to medication overuse headaches (adams et  al. ). the limits to pharmaco- logical treatments may explain high usage of complemen- tary and alternative medicine (cam) among migraineurs (wells et  al. ). the number of migraineurs who are using cam treatment in conjunction with traditional medical treatments has been growing over the years (eisenberg et  al. ; jacobson et  al. ; kaptchuck and eisenberg ). consistent with this pattern, a number of studies investigating the prevalence and pat- terns of cam treatment in migraineurs have been slowly growing, however, previous studies were conducted within individual headache clinics with limited popula- tions (adams et al. ; wells et al. ). relatively little is known about the patterns of cam treatment and the characteristics of migraineurs in the general community; therefore, the current study focuses on migraineurs who are recruited nationwide from across the us. due to technological advancement and widespread internet access in recent years, most people search for health-related information on the internet and also seek emotional and instrumental support from the internet community. considering this trend, the present study analyzed the data collected from a community- based website for migraine headache in the us. previous study (wachholtz et  al. ) found that chronic migraineurs often experienced high levels of dissatisfaction with medical and cam treatments for migraine headaches. this study further indicated that chronic migraineurs tended to seek multiple treatments instead of focusing on a single treatment. this tendency may occur because migraineurs use cam treatments not only to treat their migraine symptoms but also to improve the quality of life by preventing headaches or by increasing their energy levels (wells et al. ). previous studies (lipton et  al. ; malone et  al. ; smither- man et  al. ; wachholtz et  al. ) indicated that migraine headache was associated with negative impacts in different domains of life (e.g., physical function, social function, role function, mental health). however, rela- tively little is known about the relationship between satisfaction with cam use and the negative life impacts of migraine among migraineurs. in order to address gaps in previous studies mentioned above, the present study investigated the data collected on the web-community in order to provide insights into ( ) the characteristics of chronic migraine sufferers, ( ) chronic migraineurs who use cam treatment compared to who do not use cam treatment; ( ) the prevalence of different types of cam use; and ( ) the details of negative life impact affected by migraine; and ( ) the relationship among satisfaction with current cam use, negative life impact, migraine outcomes, and psychiatric comorbidi- ties among chronic migraineurs. methods participants participants were recruited from a well-known online migraine headache resource (migraine in amer- ica, website: https://migraine.com/). all participants were us adults aged   years or older have been diagnosed with chronic migraine by their physicians who are diag- nosed chronic migraine using icd- criteria. however, participants did not complete the survey or did not meet criteria of being diagnosed with chronic migraine; these individuals were excluded in the analysis of the present study. among completing participants, the majority of participants were female ( .   %; shown in table  ). more than half of the participants were older than  years old. most of the participants (  %) experi- enced their first migraine symptoms more than   years ago and   % of the respondents reported experiencing migraine symptoms lasting more than   h at least times per month. regarding symptoms associated with migraine, head pain and sensitivity to light were most common, followed by sensitivity to sound, difficulty con- centrating, nausea, and mood change (table  ). the most common comorbid disorders associated with migraine were depression and anxiety, followed by chronic pain, irritable bowel syndrome, and chronic fatigue. almost   % of the participants experienced at least one psy- chiatric comorbiditity. the most commonly reported triggers to migraine headaches were stress and envi- ronmental triggers, followed by lack of sleep (table  ). almost   % of the respondents reported taking special steps to avoid triggers while only  % of the participants reported keeping a journal to track their migraine epi- sodes. lastly, more than half of the participants either avoided or stopped migraine medications due to side effects (table  ). procedures all methods were approved by the university of massa- chusetts irb and all participants indicated their consent https://migraine.com/ page of lee et al. springerplus ( ) : to participate in the study prior to answering any of the study questions. migraineurs are referred to this web- site through various routes (e.g., referral from healthcare providers, internet search, obtaining information from research papers, personal invitation from other users, and information shared on social media etc.). ip address logging prevented participants from responding to the survey multiple times. participants were not compen- sated in any way for their participation in the survey. par- ticipants completed a -min self-report-survey in the spring of . materials the survey included questions regarding demograph- ics, migraine symptoms and diagnosis, general impact of migraine, and medications and treatments of migraine headache. a subset of questions was selected for analy- sis in the present study: demographics (e.g., gender, age), questions related to migraine onset, frequency of head- ache symptoms, comorbid disorders, triggers to migraine, and headache treatments (both conventional and cam). participants indicated which cam therapies they were currently using or had historically used from an exten- sive list. the present study used cam definition adopted by cochrane collaboration, which defined cam as “all practices and ideas self-defined by their users as pre- venting or treating illness or promoting health and well- being” (zollman and vickers , p. ). total scores for current cam treatments were created by adding the numbers of therapies each participant selected. for those who selected “other” participants were asked to specify table patient demographics, and  migraine characteris- tics n % gender female . male . age in years < – – . – . > . first migraine symptoms < year . – years . – years . + years . migraine symptoms frequency lasting + hours per month – times . – times . – times . – times + times . symptoms associated with migraine head- ache head pain . sensitivity to light . nausea and/or vomiting . diarrhea, constipation difficulty concentrating . fatigue . neck pain . dizziness/lightheadedness . sensitivity to sound . visual changes . weakness . mood change . sensitivity to smell . numbness/tingling . vertigo . puffy eyelid . food cravings other . table triggers to  migraine and  side effects of  migraine medications n % triggers to migraine stress . environmental (weather etc.) . lack of sleep hormones/menstrual cycle . certain food or drinks . missing meals . certain smells alcohol/drugs . physical activity . sexual activity . other . any special steps to avoid these triggers . currently keep a journal to track migraine episodes . avoided using a medicine due to side effects . stopped using a medicine due to side effects . side effects nausea/vomiting . stomach ache . rebound headaches . dizziness . other . page of lee et al. springerplus ( ) : the type of therapies they are currently using and each response was assigned into different categories of current cam use (i.e., bodywork, mental well-being, eastern- based practices, nutritional therapy, and others). satisfac- tion with current pharmacological treatments and cam treatments was assessed by one question: “how satisfied are you with your current therapies for migraine?” partic- ipants were asked to rate how much they are satisfied on -point likert scale ranging from extremely dissatisfied (coded as ) to extremely satisfied (coded as ) for each category of cam (table  ). the same scale was applied to satisfaction with pharmacological treatments. negative life impact was measured by statements ( ) migraines affect my ability to maintain relationships; ( ) migraines have impacted my professional achieve- ment; ( ) i have lost a job due to my migraines; ( ) i’ve lost friends due to my migraines; ( ) migraines contrib- uted to my divorce/separation; and ( ) migraines impact my relationship with my child/children). total score for negative life impact was a summation of the negative life items endorsed. data analysis descriptive statistics, analysis of variance, and pearson’s r correlation analyses were used to describe participant’s demographic information and migraine characteristics and examine relationships among different variables in the survey data. path analyses were performed to inves- tigate differential relationships among satisfaction with cam treatment and pharmacological treatment, number of psychiatric co-morbid disorders, migraine frequency, number of migraine symptoms, and negative life impact. in order to explore the discrepancies in the characteris- tics of cam users and non-cam users, two cam use groups were created; participants who are using at least one cam treatment currently was considered as cam users and participants who are not using any cam treatment currently were classified as non-cam users. one-way anova was conducted on different outcomes with two cam use groups. three satisfaction groups were created in order to explore how satisfaction with current cam use impact on negative life impact and fre- quency of migraine; ( ) satisfied group, which includes participants answering either highly satisfied or satisfied with their current cam treatment, ( ) neutral group, which includes participants reporting neutral satisfac- tion with current cam treatment, and ( ) cam dissat- isfaction group, which includes participants responding either highly dissatisfied or dissatisfied with their current cam treatment. one-way anovas were performed on different outcomes with three cam satisfaction groups. results the characteristics of cam users versus non‑cam users figure  shows that cam users are more likely to expe- rience prolonged or frequent migraine headaches spe- cifically lasting longer than  h for more than  days per month, have more years of suffering from migraine head- aches, are more likely to visit headache specialist, and experience more negative life impact, and tend to experi- ence depression and anxiety. one-way anova tests were performed to deter- mine statistical differences in migraine frequency, migraine years, and negative life impact between cam users and non-cam users. as shown in table  , there was a significant effect of cam status on negative life impact (p =  . , η  =  . ), years since first migraine (p  =  . , η   =  . ), migraine frequency (p  =  . , η   =  . ), number of migraine symptoms (p  =  . , η   =  . ), number of psychiatric comorbid disorders (p = . , η  = . ) and triggers to migraine (p = . , η   =  . ). these results indicated that cam users experienced significantly more negative life impact, suf- fered from migraine lasting more than   h for more days per month and for more years, experienced more table anova of  migraine factors comparing groups on cam use status f(df‑btw, df‑tot) p η negative life impact . ( , ) . . years since first migraine . ( , ) . . frequency of migraine symptoms lasting + . ( , ) . . number of migraine symptoms . ( , ) . . number of psychiatric comorbid disorders . ( , ) . . triggers to migraine . ( , ) . . fig. comparisons of responses (in percent) by cam use status (n = ) page of lee et al. springerplus ( ) : migraine symptoms and more psychiatric comorbidities, and identified more triggers to migraine compared to non-cam users. the prevalence of patterns of cam use the prevalence and patterns cam use were summarized in the table  . each participant was instructed to select cam treatment that they were currently using and was also allowed to select more than one cam treatment. according to the table  , avoiding light, hot/cold therapy, diet, taking vitamin supplements, acupuncture, chiro- practic, and relaxation/meditation were the frequently used cam treatment among the participants of the pre- sent study. almost half of the participants reported that they are currently using more than three different cam treatments even though the majority of the participants reported neutral or dissatisfied with their current cam treatment (table  ). the details of negative life impact affected by migraine headache as shown in table  , nearly half of the participants responded that migraine headache affected various aspect of their life such as their professional advancement, their interpersonal relationships, and their marriage. the relationship between satisfaction with current cam use and quality of life and migraine headache one-way anova tests were performed to see whether there were significant differences in negative life impact and frequency of migraine headache among three cam satisfaction status groups. results indicated that there were significant differences in negative life impact (p  =  . , η   =  . ), frequency of migraine lasting more than  h per month (p = . , η  = . ), number table type and  numbers of  current cam use and  cam use satisfaction (n =  ) type of cam therapy # reporting mental well-being hypnosis stress reduction relaxation/meditation deep breathing biofeedback pet therapy singing psychotherapy total bodywork message chiropractic eft (tapping) osteopathic exercise physical therapy pressure point tmj work cranial sacral therapy muscle stretches total eastern-based practices acupuncture acupressure chinese herbs yoga cupping reiki total table continued type of cam therapy # reporting nutritional therapy vitamin supplements diet butterbur tea caffeine total others aromatherapy avoid light avoid other triggers bengay/biofreeze homeopathy cannabis use prayer metaphysical healing hot/cold therapy total number (%) current cam use (number of methods used) ( . ) ( . ) ( . ) ( . ) or more ( . ) current cam use satisfaction strongly dissatisfied and dissatisfied ( . ) neutral ( . ) strongly satisfied and satisfied ( ) page of lee et al. springerplus ( ) : of migraine symptoms (p = . , η  = . ) and number of psychiatric comorbid disorders (p = . , η  = . ) among three groups (shown in table  ). in order to further examine group differences, scheffe post hoc tests were performed. post-hoc test results revealed that cam dissatisfaction group experienced significantly more negative life impact compared to cam neutral group and cam satisfaction group whereas cam neutral group experienced significantly more nega- tive life impact than cam satisfaction group (fig.  ). similar patterns were observed for migraine headache fre- quency. as shown in fig.  , cam dissatisfaction group experienced significantly more frequent migraine head- ache compared to cam neutral group and cam satis- faction group. there were significant difference between cam neutral group and cam satisfaction group indi- cating that cam neutral group experience more frequent migraine headaches than cam satisfaction group (fig.  ). number of migraine symptoms and psychiatric comor- bid disorders revealed similar patterns; cam dissatis- faction group experienced significantly more migraine symptoms and psychiatric comorbidities compared to cam neutral group and cam satisfaction group whereas there were no significant differences between cam neutral group and cam satisfaction group (fig.  ). lastly, as shown in fig.  , different pattern was observed on triggers to migraine; cam satisfaction groups identified significantly more triggers than cam neutral group and cam dissatisfaction group whereas no significant difference was observed between cam neutral group and cam dissatisfaction group. path analysis of treatment satisfaction (cam treatment) on negative life impact of migraine figure  showed the differential relationships among treatment satisfaction of cam use, migraine outcomes, psychiatric comorbid disorders, and negative life impact. cam treatment satisfaction was significantly negatively related to number of psychiatric comorbidities, frequency of migraine, and number of migraine symptoms. cam treatment satisfaction was more strongly correlated with migraine outcomes (e.g., frequency and migraine symp- toms) compared to psychiatric comorbidities. however, migraine outcomes and psychiatric comorbidities were all significantly positively related to negative life impact. discussion consistent with previous studies (adams et al. ; gaul et al. ; lambert et al. ; malone et al. ; rossi et  al. ; wachholtz et  al. ), the present study revealed that cam users were more likely to have comor- bid mental health issues, suffered from more intense headaches for a longer period of time, and experienced more negative life impact of migraine compared to non- cam users. these results suggest that individuals may seek out alternative sources of healing when standard biomedical treatments do not meet their needs, are too expensive, considered too dangerous, or the side effects of treatments are too overwhelming. in spite of common use of cam treatments as the last resort to treat intense intractable pain, migraineurs usually do not inform their medical providers about their cam use (lambert et  al. ; rossi et al. ). this result highlights the impor- tance of investigating the patterns of cam use among chronic migraineurs. a number of studies (adams et  al. ; gaul et  al. ; lambert et  al. ; rossi et  al. ) examined migraineurs’ cam using patterns but most studies were conducted in headache clinics so the present study investigated the cam use among chronic migraineurs in the community settings. according to the current study, managing triggers such as avoiding light and applying hot and cold packs were the most commonly used cam treatment among chronic migraineurs. next frequently used cam treat- ments include nutritional therapies. these results can be explained by people’s tendency to select the cam meth- ods that are most easily available when treating migraine symptoms and trying cam for the first time. more extensive therapies such as massage, acupuncture and chiropractic treatment were also frequently used cam treatments among the participants of the current study but were less popular than home-based cam options, table negative life impact of  migraine headaches (n =  ) event n (%) migraine affect my ability to maintain relationships ( . %) migraines have impacted professional advancement ( . %) i have lost a job due to my migraine ( . %) migraines impact my relationship with my child/children ( . %) i’ve lost friends due to my migraines ( . %) migraines contributed to my divorce/separation ( %) table one-way anova in negative life impact, migraine outcomes, and  psychiatric comorbid disorders by  current cam satisfaction groups f(df‑btw, df‑tot) p η negative life impact . ( , ) . . frequency of migraine symptoms lasting + . ( , ) . . number of migraine symptoms . ( , ) . . number of psychiatric comorbid disorders . ( , ) . . page of lee et al. springerplus ( ) : which were consistent with the results from previous studies (gaul et al. ; rossi et al. ). these results may suggest important clinical implications for chronic migraineurs. individuals with chronic migraine may experience difficulty in engaging in more extensive cam treatments on a consistent basis due to their physical disability associated with migraine and economic costs related to these non-home based cam practices. how- ever, they may be more willing to try methods they can practice at home such as managing triggers, monitoring fig. scheffe test: three satisfaction groups on outcomes. note: arrow signs indicate statistically significant different between two satisfaction groups page of lee et al. springerplus ( ) : their pain and symptoms, and self-pain-management techniques such as meditation/relaxation and activi- ties that enhance mental well-being (e.g., pet therapy, music, prayer). according to the current study, almost half of the chronic migraineurs identified various triggers to their migraine headaches; however, only   % of the participants reported keeping a journal to track migraine episodes. education for tracking migraine episodes will enhance chronic migraineurs’ ability in managing trig- gers to migraine. two of the most frequently identi- fied triggers to migraine among chronic migraineurs in the present study were stress and lack of sleep. those two factors can contribute to the development of other comorbid disorders such as psychological problems and sleep disorders when those become chronic, therefore, it should be important for health care providers to provide sleep hygiene education and make a referral to psycho- therapy interventions such as sleep education or stress management therapy when treating chronic migraineurs. like most chronic illnesses, migraine headaches pro- foundly impact individuals’ health as well as his/her fam- ily and vocational life. previous research suggested the impacts of migraine headache on different aspects of life (lipton et  al. ; malone et  al. ; smitherman et  al. ; wachholtz et  al. ) and the impact of migraine in physical and social functioning was even greater for migraineurs compared to individuals who struggle with other chronic illnesses (solomon et al. ). the present study revealed that chronic migraine headaches placed similar burden on migraineurs to non-chronic migraineurs as chronic migraine not only causes physical disability but also brings social disability due to its chronicity and breath of symptoms associated with migraine. thus, a multi-dis- cipline approach in treatment planning can be beneficial in assisting chronic migraineurs. in addition to traditional pharmacological treatments, various cam treatments such as psychosocial treatments, nutritional treatments, and bodywork therapies can be recommended to chronic migraineurs in order to manage their migraine symptoms. it should also be noted that migraines may be treat- ment resistant. the majority of the participants in the present study reported that they suffered from migraine headaches for more than   years and either avoided or stopped migraine medications due to side effects. furthermore, high numbers of chronic migraineurs in the current study reported either neutral or dissatisfac- tion with either pharmacological treatments or cam treatments, which was consistent with previous stud- ies (malone et  al. ; wachholtz et  al. ). in spite of its limited benefit, chronic migraineurs are known to attempt multiple cam treatments and this treat- ment-seeking-pattern may occur because ( ) traditional fig. path analysis of cam treatment on negative life impact page of lee et al. springerplus ( ) : pharmacological treatments do not properly address their pain and symptoms associated with migraine; and ( ) cam treatments help chronic migraineurs to reduce negative impact of migraine by improving their physical and mental wellbeing. examining the negative effects of migraine in different domains of life is well established in previous research, however, a closer look at the relationship between treat- ment satisfaction with cam use and negative life impact by investigating factors affecting both treatment satisfac- tion with cam use and negative life impact has not been conducted in previous studies. according to the present study, when migraineurs had greater satisfaction with alternative medicine treatment, they concurrently had lower levels of negative life impact, less frequently suffered from prolonged migraine headaches, experienced less symptoms associated with migraine, and were less likely to experience psychiatric comorbidities. we would postulate that these results occur because “satisfaction” means that migraineurs have experienced some symptom relief with their cam treatment, where as “dissastified” suggests that they have not experienced relief from cam treatments, so they are still suffering and may not see an end to their headaches leading to greater psychiatric comorbidities. therefore, satisfaction with cam treatments may play protective factor for negative effects of migraine head- ache in daily functioning. in order to further explore the relationship between cam treatment satisfaction and negative life impact, the present study examined migraine outcomes (e.g., migraine frequency and number of migraine symptoms) and psychiatric comorbidity (e.g., anxiety, depression, bipolar disorder, ptsd etc.) and how those factors are associated with cam treatment satisfaction and nega- tive life impact. the results of the present study showed that the inverse relationship between cam treatment satisfaction and psychiatric comorbidities was weaker than the inverse relationship between cam treatment satisfaction and migraine outcomes although psychiatric comorbidities and migraine outcomes were all strongly associated with greater levels of negative life impact. these results may indicate that cam treatment may affect mental well-being of chronic migraineurs posi- tively but in a lesser degree compared to the degree that the effectiveness of cam treatments affects migraine outcomes. one partial explanation for this is that rela- tively few numbers of cam treatments identified in the present study were devoted to improving mental health well-being. in the present study, psychiatric and psychological factors may play the important roles as a contributing factor (i.e., stress as one of the most fre- quently identified triggers to migraine) as well as a pre- cipitating factor (i.e., psychiatric comorbidities were the most common comorbid disorders among chronic migraineurs) to migraine headache. psychiatric comor- bidities may also be a risk factor to negative life expe- riences. for instance, chronic migraineurs may blame migraine headache for their disabilities when their dis- abilities are actually due to their psychiatric comor- bidities (wachholtz et al. ) or their pain experience caused by migraine may have been amplified due to psychiatric comorbidities. these results are significant because they emphasized the importance of treating psychiatric comorbidities in chronic migraineurs since appropriate care of the psychiatric comorbidities can directly affect quality of life and/or indirectly to increase quality of life by reducing migraine symptoms. previous study (pistoia et al. ) indicated that combined treat- ments to target both migraine symptoms and psycho- logical co-morbidities in order to enhance the quality of life for chronic migraineurs are important, however, only few studies (kleiboer et  al. ) investigated the effectiveness of psychological treatments on chronic migraineurs. limitations despite the contributions of the present study to the field, there are some limitations. although the present study recruited participants from one major us migraine headache website and have similar demographics to us migraineurs, the participants of the present study may not be representative for all migraineurs as it was self- selected sample, which is the standard method of collect- ing data in on-line survey study. in addition, the present study measured symptoms associated with migraine as well as the negative life impact caused by migraine head- aches. future studies need to include questionnaires as well as qualitative methods such as individual interviews as well as focus group data in order to provide more detailed pictures of the negative impact of migraine head- ache as well as the experiences of chronic migraineurs who seek self-care resources on-line. conclusions the present study contributed to the field by increasing our knowledge about migraine characteristics, cam use patterns, and the differential relationships among cam treatment satisfaction, migraine headache outcomes, psychi- atric comorbidities, and negative life impact among chronic migraineurs. chronic migraineurs usually pursue multiple cam treatments in spite of low levels of satisfaction with their treatments as they tend to suffer from more severe symptoms of migraine and more psychiatric comorbidities without significant improvement from traditional medi- cal treatments. consistent with previous literature, chronic migraineurs experience a broad range of migraine symptoms page of lee et al. springerplus ( ) : and those symptoms negatively affect various aspects of chronic migraineurs’ life. this shows the complex nature of migraine headache compared to other chronic illnesses and therefore calls for multidisciplinary approach to treatment. cam treatment may play a protective factor against nega- tive life experiences among chronic migraineurs. however, cam treatments may have a limited benefit for psychiatric comorbidities. more attention is needed to consider psychi- atric and psychological factors in planning the treatment of chronic migraineurs as those factors may play an important role in disease process of migraine headache. the implemen- tation of psychosocial interventions for chronic migraineurs, the proper referral system to psychiatric and psychological treatments by treatment providers, and the establishment of clinical guidelines for evidence-based cam treatments that target mental well-being in the context of headache clinics can enhance the quality of life among chronic migraineurs. in order to develop clinical guidelines of cam treatments that focus on mental wellbeing as well as psychiatric and psychological treatments, future studies should examine lon- gitudinal changes based on different types of cam use that target mental well-beings. authors’ contributions jl participated in the development of main concepts for the present manu- script, performed the statistical analysis and the interpretation of the data, and wrote the manuscript. aw participated in the design of the present study, acquired the data, provided guidance and feedback in data analysis and data interpretation, and helped to draft the manuscript. ab participated in the study design and coordination of data collection, and helped to draft the manuscript. all authors read and approved the final manuscript. author details psychology department, chung-ang university, heukseok-ro, dong- jak-gu, seoul, korea. vp community development, health union llc, international plaza, philadelphia, pa , usa. department of psychology, university of colorado denver, denver, co , usa. acknowledgements research reported in this publication was supported by the national institute on drug abuse of the national institutes of health under award number k da to amy wachholtz. the content is solely the responsibility of the authors and does not necessarily represent the official views of the national institutes of health. competing interests the authors declare that they have no competing interests. ethics approval and consent to participate all methods were approved by the university of massachusetts irb and all par- ticipants indicated their consent to participate in the study prior to answering any of the study questions. received: april accepted: may references adams j, barbery g, lui cw ( ) complementary and alternative medicine use for headache and migraine: a critical review of the literature. j head face pain ( ): – burch r, lode s, lode e, smitherman t ( ) the prevalence and burden of migraine and severe headache in the united states: updated statis- tics from government health surveillance studies. j head face pain ( ): – eisenberg dm, davis rb, ettner sl, appel s, wilkey s, van rompay m, kes- sler rc ( ) trends in alternative medicine use in the united states, – : results of a follow-up national survey. jama : – gaul c, eismann r, schmidt t, ma a, leinisch e, wiesse t, ever s, henkel k, franz g, zierz s ( ) use of complementary and alternative medicine in patients suffering from primary headache disorders. cephalalgia : – jacobson ig, white mr, smith tc, smith b, wells ts, gackstetter gd ( ) self-reported 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chronic migraine. curr pain headache rep : – rossi p, lorenzo gd, malpezzi mg, faroni j, cesarino f, lorenzo cd, nappi g ( ) prevalence, pattern and predictors of use of complementary and alternative medicine (cam) in migraine patients attending a headache clinic in italy. cephalagia : – rossi p, lorenzo gd, malpezzi mg, faroni j, malpezzi mg, cesarino f, nappi g ( ) use of complementary and alternative medicine by patients with chronic tension-type headache: results of a headache clinic survey. headache : – smitherman ta, mcdermott mj, buchanan em ( ) negative impact of episodic migraine on a university population: quality of life, functional impairment, and comorbid psychiatric symptoms. headache : – solomon gd, skobieranda fg, gragg la ( ) does quality of life differ among headache diagnoses? analysis using the medical outcomes study instrument. headache : – wachholtz a, malone c, bhowmick a ( ) the chronic migraineur and health services: national survey results. pain manag med ( ): – wells re, bertisch sm, buettne c, phillip rs, mccarthy ep ( ) complemen- tary and alternative medicine use among adults with migraines/severe headaches. headache ( ): – zollman c, vickers a ( ) abc of complementary medicine: what is complementary medicine? br med j ( ): – . doi: . / bmj. . . http://dx.doi.org/ . /bmj. . . http://dx.doi.org/ . /bmj. . . 	does complementary and alternative medicine (cam) use reduce negative life impact of headaches for chronic migraineurs? a national survey 	abstract 	background: 	methods: 	results: 	conclusions: 	background 	methods 	participants 	procedures 	materials 	data analysis 	results 	the characteristics of cam users versus non-cam users 	the prevalence of patterns of cam use 	the details of negative life impact affected by migraine headache 	the relationship between satisfaction with current cam use and quality of life and migraine headache 	path analysis of treatment satisfaction (cam treatment) on negative life impact of migraine 	discussion 	limitations 	conclusions 	authors’ contributions 	references microsoft word - juliann.jeppsen.dissertation [whole mark-up removed] a qualitative study of military veterans’ resilience and body esteem following combat-related limb amputation by juliann marie cook jeppsen a dissertation submitted to the faculty of the university of utah in partial fulfillment of the requirements for the degree of doctor of philosophy department of health promotion and education the university of utah may copyright © juliann marie cook jeppsen all rights reserved t h e u n i v e r s i t y o f u t a h g r a d u a t e s c h o o l statement of dissertation approval the dissertation of juliann marie cook jeppsen has been approved by the following supervisory committee members: glenn richardson , chair june date approved lesley podlog , member june date approved nick galli , member june date approved jakob jensen , member june date approved david wood , member june date approved and by les chatelain , chair/dean of the department/college/school of health promotion and education and by david b. kieda, dean of the graduate school. abstract this dissertation is presented in a three-article format. article , “the impact of disability on body esteem: a review of the literature,” is a review that examines the existing literature regarding body esteem in individuals with various disabilities. the purpose of the article was to highlight principal findings and identify areas that require further research. article is entitled, “qualitative research contributions to military post combat transition and reintegration: a review of the literature.” the purpose of this review was to examine the existing qualitative literature regarding military postcombat transition and reintegration. four categories were identified, which included ( ) psychosocial adjustment and coping; ( ) physical disability adjustment; ( ) protective factors; and ( ) transition challenges. several themes were also distinguished within each category. article , “a qualitative study of military veterans’ resilience and body esteem following combat-related limb amputation,” included semistructured interviews with six former service members who had sustained a military combat-related limb amputation, and their spouses. semistructured interviews provided an opportunity to explore the resilience and body esteem of each amputee, as well as the views of the respective spouses. the metatheory of resilience and resiliency was utilized to guide content analysis of the interviews. open, axial, and selective coding were used to analyze the data. table of contents abstract ....................................................................................................................... iii acknowledgements ............................................................................................... vi  chapters introduction ............................................................................................................   three-manuscript format ........................................................................................   literature review.....................................................................................................   study overview .....................................................................................................   study methodology ................................................................................................   conclusion .............................................................................................................   references .............................................................................................................. the impact of disability on body esteem: a review of the literature ...................................................................................................................   abstract ..................................................................................................................   introduction ............................................................................................................   methods..................................................................................................................   results and discussion ..........................................................................................   conclusion .............................................................................................................   references ..............................................................................................................   qualitative research contributions to military postcombat transition and reintegration: a review of the literature...........   abstract ..................................................................................................................   introduction ............................................................................................................   methods..................................................................................................................   findings and discussion ........................................................................................   conclusion ............................................................................................................. future research .....................................................................................................   references ..............................................................................................................   a qualitative study of military veteran's resilience and body esteem following combat-related limb amputation .......................   v abstract ..................................................................................................................   introduction ............................................................................................................   overview of the literature .....................................................................................   methods..................................................................................................................   results ..................................................................................................................   discussion ............................................................................................................   limitations ...........................................................................................................   conclusion ...........................................................................................................   references ............................................................................................................   summary ..................................................................................................................   limitations ...........................................................................................................   application to health education ..........................................................................   personal reflections.............................................................................................   references ............................................................................................................   appendices a recruitment material................................................................................... b consent form ......................................................................................................   c demographics questionnaire ....................................................................   d veteran interview guide .............................................................................   e spouse interview guide..................................................................................   f the metatheory of resilience and resiliency .................................   g health education program example: body esteem, self- worth, and resilience with wounded warriors ................................. h resilience programs in the u.s. military ............................................   acknowledgements i have been incredibly blessed with many amazing people in my life. i would not be where i am without their love and support. first, i would like to thank the veterans who participated in this study. without their willingness to share their stories, i would not have been able to complete my study and learn the incredible lessons that i learned. to my chair, dr. glenn richardson, thank you for supporting me and having a flexible schedule as i tried to maneuver around my military schedule. i always felt free to call you, stop by your office, and do whatever i needed to do in order to make this project work. i am truly grateful to you for your guidance and inspiration. i want to thank my other committee members as well for their assistance and support. to dr. david wood, thank you for your military leadership experience and your amazing support with the data analysis. without you, i couldn’t have done this. to dr. les podlog, thank you for teaching me how to write an effective grant proposal. although it was a tedious undertaking for me, it was well worth it, and your expertise was priceless to me. to dr. jakob jensen, thank you for your patience and willingness to spend so much extra time with me as i struggled through my statistics courses. you really supported me after i had to miss a large portion of one semester due to a military assignment out of state. to dr. nick galli, thank you for your support with qualitative research. your open door policy was very comforting to me and i have greatly appreciated our working relationship that started well before i entered the doctoral program. vii i would like to thank dr. justine reel for all of her support over the years. dr. reel, you encouraged me to apply to this graduate program, and your inspiration was a driving force in my decision to pursue graduate work in this field. you were a tremendous support throughout most of my time at the university of utah, and i was sad to see you go. it has been comforting to me to know that you are only a phone call away, and i truly hope that we will always stay involved in each other’s lives. you have a heart of gold! to dr. bradeigh godfrey, dr. david lipschitz, and nathan wilcox, thank you for your amazing assistance with my participant recruitment. without you, this project would not have happened. i hope that we will continue to work together as we support our military service members and veterans. to kalin holyoak, my tireless research assistant, thank you for your consistent efforts with coding and editing. i could not have made it without you. to my family, thank you for your unconditional love and support. without each of you, i would not be the person that i am today. our family’s military legacy set a path for me to continue serving this great country and the people who reside here. i would especially like to thank my parents, fred and judy cook, for never giving up on me. i love you and can never express how grateful i am to you. to my husband, paul, thank you for believing in me and encouraging me to be the best that i can be. you are an amazing man, and my life feels so complete with you in it. to my son, justin, thank you for being you! you are so self-motivated and driven to succeed. you have been an incredible support to me as i attempted to balance work, school, and family life. to our other children and grandchildren, kris, melanie, landon, jaden, colby, katie, anna, viii oakly, tiana, william, ava, brennen, brittany, and jaxx, thank you for your unconditional love and respect. each of you has inspired me in your own special way. thank you to my siblings and my extended family, suzanne (kevin, kenz, jesse, zach), marianne (joseph, gabe, mike, seth, ashby, sam, lizzy), and mitchell (jaci, weston, madi, mason), for your love, and especially for your friendships. and thank you for never giving up on me. i will always be a work in progress! most of all, i want to thank the lord god for his continual guidance, even though the many times when i lacked faith and willingness. i know that through his love and support, all of the pieces of the puzzle have come together in the time and manner that they were supposed to. this inspires my faith and my desire to continue a life of service to his children. chapter introduction during the vietnam conflict, nearly % of wounded service members succumbed to their injuries, largely because of the inability to reach mobile surgical hospitals (arredondo, foote, pruden, mcfarland, & mcfarland, ). with improvements in protective gear and rapid medical evacuation to medical and surgery units, nearly % of service members wounded during the operation iraqi freedom (oif) and operation enduring freedom (oef) conflicts survived. while the core body is well protected, arms and legs are vulnerable to blast injuries. rapid evacuation to military medical centers in the united states results in the medical care system seeing more severely wounded service members with major limb loss surviving and requiring extensive rehabilitation (arredondo et al., ). after the service member is injured, he or she begins the road to recovery. although this process is life long, the advantages of being a veteran include access to multiple support systems and the development of innovative medical care for combat injuries. this research builds on previous work by continuing to explore how individuals cope with and recover from amputations, with specific attention to how body esteem may or may not affect the injured individual’s ability to reintegrate back into society in general. the experiences of combat amputees have been explored through the lens of the metatheory of resilience and resiliency. it is important to utilize this theoretical framework because it gives structure to the understanding of the recovery process. the theoretical framework also provides a means to conceptualize relationships between body esteem, resilience, and reintegration following amputation. these relationships are important to examine given that the physical structure of the amputee’s body has significantly changed. specifically, this research examines the relationship between resilience, body esteem, and reintegration. resilience refers to the ability to maintain stable, healthy levels of functioning, and the capacity for generative experiences and positive emotions following highly disruptive events (bonanno, galea, bucciarelli, & vlahov, ). body esteem refers to one’s view of the physical self in relation to feelings of self-worth and life purpose (akyol, tander, goktepe, safaz, kuru, & tan, ). reintegration refers to the degree to which one is able to integrate with previously known communities and networks of support (richardson, ). this work examines the experiences of six amputees following the extremely adverse event of being traumatically injured. some amputees may be able to resiliently reintegrate, meaning that they are able to thrive and perceive their bodies and minds as stronger and more capable than before the injury. other amputees may reintegrate with loss, meaning that they are not be able to accept their physical changes or psychological changes that may accompany the physical changes (richardson, ). the result of this research is an increased understanding of how some individuals with amputations experience the trauma, what personal resilient traits have guided their recovery process, and how they come to some level of integration back with the society in which they functioned prior to the amputation. three-manuscript format the following dissertation focuses on examining issues related to resilience, body esteem, and reintegration. it is presented using a three-manuscript format. the subsequent three chapters will be as follows: ) chapter : “the impact of disability on body esteem: a review of the literature,” is a review that examines the existing literature regarding body esteem in individuals with various disabilities. the purpose of the article was to highlight principal findings and identify areas that require further research. ) chapter : “qualitative research contributions to military postcombat transition and reintegration: a review of the literature” examines the existing qualitative literature regarding military postcombat transition and reintegration. four categories were identified, which included ( ) psychosocial adjustment and coping; ( ) physical disability adjustment; ( ) protective factors; and ( ) transition challenges. several themes were also distinguished within each category. ) chapter : “a qualitative study of military veterans’ resilience and body esteem following combat-related limb amputation” included semistructured interviews with former service members who had sustained a military combat-related limb amputation. five of the spouses were also interviewed in order to gain additional insight from the partner point of view. one spouse was not able to participate due to researcher’s inability to contact her. in lieu of a grounded theory approach, which is common in qualitative research, the metatheory of resilience and resiliency was utilized to guide the analysis of the interviews with these male veterans, and female spouses, with the understanding that the interviews were semistructured and open-ended in nature. open, axial, and selective coding were used to analyze the data. the remaining chapter discusses limitations, implications for the field of health promotion and education, and personal reflections of the researcher. literature review this review defines the nature of resilience and body esteem, and describes how these concepts have been explored in relation to traumatic amputations. resilience has long been a topic of research interest, and more so recently within military and veteran populations, with the vast numbers of troops having been sent, and now returning from iraq and afghanistan. however, no published qualitative studies have been identified that focus on body esteem, resilience, and the reintegration process of military personnel following a combat-related amputation. body esteem and amputation within the context of this review, body image and body esteem are interchangeably used and are defined as a person’s perception, positive or negative, of body size, shape, and appearance (reel & beals, ). in western cultures, body image seems to be based on youth and physical attractiveness. this emphasis can overshadow other personal attributes (taub, blinde, & greer, ). the importance given to the physical body may have a negative impact on people with an amputation, especially on body perception (sousa, corredeira, & pereira, ). perception of everyday reality depends on one’s point of view of the world and the body’s way of being-in-the-world. the actions of the body construct a world of social relations (sousa et al., ). in this way, the body can only be seen as deficient by comparison, assuming that others’ views are considered important (crossley, ). a person with an acquired amputation experiences a fundamental being-in-the-world change that creates a need to relearn and reformulate ways of living life. the loss of a limb is perceived as a loss of part of the self, and as a loss of the “lived-body” (goodwin, thurmeier, & gustafson, ). after an amputation, one is faced with loss of functionality, and often times, loss of ability to continue working, which then can have a profound effect on self-concept (horgan & maclauchlan, ). social discomfort and body image anxiety tend to be associated with a poor adjustment in terms of greater activity restriction, depression, and generalized anxiety (horgan & maclauchlan, ). body image experiences of individuals with an acquired amputation present distinct degrees of adjustment to a new reality. social barriers that individuals with amputations have to face on a daily basis become apparent in prejudiced and discriminatory conceptions that have been embedded in a society that struggles to accept body differences. as such, resilience is an important aspect to explore in relation to the body esteem of those who have visible physical differences. body esteem and resilience individuals with visible physical differences tend to struggle with their body esteem namely because the myth of bodily perfection is prevalent throughout western society. body image is embedded within historical, cultural, and social settings, and it is responsive to everyday experience (sousa et al., ). the body is also viewed as a means for being productive. people with disabilities have emphasized how important it is for them to work, not only to provide stable income, but also as a means of maintaining self-respect and giving meaning to life (schoppen, boonstra, groothoff, devrie, goeken, & eistma, ). social discomfort and body image anxiety tend to be associated with poor adjustment in terms of greater activity restriction, depression, and generalized anxiety (horgan & maclachlan, ). there is evidence that sociocultural norms for the ideal body influence individuals to base their self-worth more strongly on appearance (strahan, ). those with visible disabilities have reported that they often experienced rejection in social settings (stone, ). when there is a sudden traumatic change to body image, typically it creates anxiety and is perceived as a distortion of self (aamot, ). even if plastic surgery or prosthetic placement creates a socially acceptable body, individuals may have difficulty adjusting their mental image with the new image (aamot, ). a growing amount of more recent literature concerning body esteem can be found in research concerning eating disorders and their associated body image symptoms (reel & beals, ; stice & hoffman, ). in related studies, resilient qualities have been found to be protective factors against body dissatisfaction (cook-cotone & phelps, ). choate ( ) proposed a body image resilience model where five specific protective factors were identified that serve as the foundation for the resilience model. the protective factors include ( ) family-of-origin support, ( ) gender role satisfaction, ( ) positive physical self-concept, ( ) effective coping strategies, and ( ) sense of holistic balance and wellness. furthermore, the metatheory of resilience and resiliency suggests that, among several resilient drives, the drive for noble resilience includes an innate desire to sustain a sense of self-worth, which encompasses physical self-esteem (body esteem) and purpose in life. thus, body esteem has been theorized to be an integral component of an individual’s ability to bounce back following trauma or adversity (richardson, ). the nature of one’s sense of the physical self and how this is connected to one’s self-worth and purpose in life remains to be of great interest to researchers when exploring resilient factors in combat wounded military personnel. resilience psychological resilience is important for the military community with regard to keeping military members and leaders fit for duty and protecting the health and wellbeing of military families (meredith, ). the resilience concept has been the cornerstone of the defense centers of excellence for psychological health and traumatic brain injury (dcoe) resilience program, which was created in as an effort to shift the culture within the military away from an illness-focused medical model of care to a model that focuses on psychological health (meredith, ). resilience research efforts have exponentially increased in the military as a result of the military activities and related consequences during operation enduring freedom (oef) and operation iraqi freedom (oif), specifically with regard to the factors that contribute to resilience (bonanno, ; burnell, ; butler et al., ; dolan & adler, ; gillham et al., ; haglund et al., ; king et al., ; maguire & hagan, ; meredith et al., ; norris & stevens, ; tugade & fredrickson, ; ; van breda, a; van breda, b) and the resilience programs that are operating within the military infrastructure (adler et al., ; bowles & bates, ; decker, ; deuster et al., ; jarrett, ; ritchie et al., ; sammons & batten, ; sharpley et al., ; waynick et al., ; williams et al., ; warrior mind training, ). resilience in general has long been a concept of research interest. numerous resilience-based theories and research projects have been explored and implemented throughout the past several decades (emmons & crumpler, ; greene et al., ; mccullough, ; richardson, ; rutter, ; ryan & deci, ; seligman, ; ungar, ; werner, ). the majority of theories incorporate the notion that resilience is a dynamic process that changes over time (fletcher & mustafa, ). patterson ( ) described a process of families balancing demands and capabilities as they interact with family meanings. the outcome is either family adjustment or adaptation. polk ( ) introduced a nursing model of resilience where resilience is conceived as the result of a synergistic relationship between four patterns: dispositional, relational, situational, and philosophical. haase ( ) presented an adolescent resilience model based on the interaction of concepts that are categorized as one of three factors: protective (e.g., family protective, social protective), risk (e.g., individual risk, illness- related risk), and outcome (e.g., resilience, quality of life). agaibi and wilson ( ) presented a generic model of resilience in response to psychological trauma. the model is an integrative, person-environment approach, emphasizing the interaction between five interrelated variables: personality, affect, modulation, ego defenses, coping style and mobilization, and utilization of protective factors. gillespie, chaboyer, wallis, and grimbeek ( ) suggested that five variables explain % of the variation in resilience: hope, self-efficacy, control, coping, and competence. a grounded theory of personal resilience was presented by denz-penhey and murdoch ( ) which suggested that resilience consists of five dimensions: connectedness to one’s social environment, one’s family, one’s physical environment, one’s experiential inner wisdom, and one’s strong psychological self. vanvliet ( ) also introduced a grounded theory of shame and resilience in adulthood, and suggested a rebuilding of the self as the main category that signifies the process of recovering from a shame event. self-reconstruction occurs through five main processes: connecting, refocusing, accepting, understanding, and resisting. leipold and greve ( ) indicated that resilience results from coping processes (e.g., assimilation and accommodation), which are influenced by personal and situational conditions. resilience is considered to be an important part of the conceptual bridge between coping and development. galli and vealey ( ) introduced a conceptual model of sport resilience where adversity, sociocultural influences, and personal resources were factors discussed by athletes as being at the center of the resilience process (agitation), which consequently lead to positive outcomes (e.g., learning and perspective). mancini and bonanno ( ) hypothesized that individual differences (personality, a priori beliefs, identity, complexity, positive emotions, and comfort from positive memories) are proposed to have direct and indirect effects on coping with loss. appraisal processes and social support play a critical role as shared mechanisms of resilience. one final grounded theory suggested that numerous psychological factors (relating to a positive personality, motivation, confidence, focus, and perceived social support) protect the world’s best athletes from the potential negative effect of stressors by influencing their challenge appraisal and meta-cognitions. these processes promote facilitative responses that precede optimal performance (fletcher & sarkar, ). the concept of resilience continues to evolve through current research efforts that provide new insights to this phenomenon and its related factors. additional qualitative inquiry may support a deeper understanding of the nature of resilient qualities in relation to the development and maintenance of wellbeing in military personnel and veterans. resilience and amputation resilience and how it relates to body esteem and self-concept is important to consider for individuals who have sustained a military combat-related amputation because these individuals are faced with several life-altering adjustment issues when returning from deployment with a disabling injury. there appears to be a dearth of research pertaining specifically to resilience and amputation. most studies are quantitative in nature, and report findings in the areas of psychosocial adjustment and posttraumatic growth with regards to amputation (horgan & maclachlan, ; benetato, ). other studies focus more on adaptation to prosthetic limb use (murray, ). also, since there is a dearth of research on body esteem, resilience, and reintegration of military veterans following combat-related amputation, this gap presents a need for qualitative research that can serve to strengthen existing resilience programs and recovery efforts for military service members and veterans. study overview the purpose of this dissertation was to learn about individual lived experiences of sustaining a military combat-related amputation, with specific focus on how the veteran’s injury has affected body esteem, and how body esteem and personal (resilient) characteristics are determining the veteran’s path of reintegration. this qualitative study used a purposeful sample of military veterans and their spouses to develop an in-depth understanding of the reintegration process following amputation. the main research questions include: . what is the nature of individual experiences of sustaining a combat-related amputation? . in what ways, if at all, has the amputation affected the veteran’s body esteem? . how do veterans with amputations, and their spouses describe the role of personal resilience in the paths of reintegration? study methodology qualitative research based upon these research goals, the metatheory of resilience and resiliency was chosen as a conceptual framework (appendix f). this methodology fits well with the study’s main goal of understanding the reintegration process of military service members who sustained a combat-related traumatic limb amputation. paradigm guiding the research a constructivist research paradigm was chosen. a research paradigm is guided by five principles: ontology (the nature of reality), epistemology (the relationship between researcher and participant), axiology (the role of the researcher’s values), rhetorical structure (the language used to present the results), and methodology (the procedures of research) (cresswell, ; ponterotto, ). each of these principles explains assumptions associated with a constructivist paradigm. ontology the ontological perspective used to guide this study suggests that no objective reality exists. each individual’s reality is a social construction based on concepts, models, and schemes that are invented in order to make sense of their own experiences (bloomberg & volpe, ; handbook of qualitative research, ; ponterotto, ). epistemology part of capturing each participant’s reality and discovering meaning is through the interaction between the researcher and participant (morse et al., ). it is believed that both the researcher and participant are changed in some way because of their interactions with one another. axiology according to a postpositivist paradigm, research should be objective and unbiased. however, according to the constructivist paradigm, the researcher’s individual values and biases can have an important role in the research process. for this study, the researcher’s experiences were a means to dialogue and connection with the participants (ponterotto, ). rhetorical structure a third-person rhetorical structure is used in discussing past research and current results. a first-person structure would be used when the researcher is focusing on personal experiences related to the research topic (ponterotto, ). methodology a qualitative approach was selected as it provides “a wide range of ways to explore and understand data that would be wasted and their meaning lost if they were preemptively reduced to numbers” (richards & morse, , p. ). conducting this study was a deductive process in which general ideas within the conceptual framework were utilized to define and give meaning to the components of the specific stories and cases. individual stories from participants were drawn upon to explain meaning and support the metatheory of resilience and resiliency with regard to the participants’ reintegration following combat-related traumatic limb amputation (cresswell, ). researcher as instrument the researcher is considered to be the “instrument” used to collect data. consequently, it is important that the researcher account for personal experiences and acknowledge how personal values, beliefs, and culture may affect the process and quality of data collected (marshall & rossman, ; richards & morse, ). one researcher suggested, “the art and science of qualitative research is the ability to provide a credible interpretation of the findings while acknowledging [these] biases, assumptions and feelings” (soohoo, , pp. - ). in acknowledging personal values and experiences, i will be better equipped to present credible findings based on the participants’ experiences. i have taken courses in research design and qualitative research, which i believe have sufficiently prepared me to conduct this qualitative study. additionally, i have been a licensed clinical social worker (lcsw) since , specializing in the treatment of posttraumatic stress disorder (ptsd), and am currently operating as the director of behavioral health for the utah army national guard in a military duty status. furthermore, i have been a u.s. army master resilience trainer for several years. i strongly believe that this background, along with a long family legacy of military service and leadership, provides rich personal preparation for me to conduct this study. participants  selection criteria participants were purposefully selected based on the following sampling criteria: (a) men (and their respective spouses) between the ages of and who sustained a combat-related traumatic limb amputation; (b) currently serving or have served in one of the branches of the united states armed forces; (c) were willing and able to share their experiences of reintegration following injury; (d) fluent english speaking. no specific geographic parameters were determined for this study. however, the salt lake veterans affairs (va) was instrumental in providing access to participants for the study. thus, all participants resided within the service area of the salt lake va. the age parameters were determined in order to capture military service members who had been injured during operation iraqi freedom (oif) and operation enduring freedom (oef), both of which are post / service periods. the male gender was selected simply to narrow the focus of the study. the spouses were recruited through the male veteran participants. and finally, due to the qualitative nature of this study, it was important that participants (veterans and their spouses) were willing to share their experiences and that they spoke fluent english. sampling procedures purposeful sampling was used initially to recruit information-rich cases that matched the above study criteria. theoretical sampling was also used to select individuals who would best contribute to the chosen conceptual framework, the metatheory of resilience and resiliency. this included obtaining more information from participants who had already been selected, and recruiting more participants that met the sampling criteria and contributed to the chosen theory (bloomberg & volpe, ; corbin & strauss, ). sampling and data collection were immediately followed by data analysis. typically, theoretical sampling and data analysis is an iterative process that continues until saturation is reached. saturation occurs when categories are well-defined and fresh data no longer bring new insights (charmaz, ; corbin & strauss, ). thus, it is often difficult to determine a sample size prior to completing the study. however, because of time constraints associated with this study, the goal for this study was to obtain to interviews from approximately to veterans and their spouses, with short follow-up discussions with each participant (cresswell, ). upon completion of the study, there were interviews from veterans and spouses. recruitment the veteran participants in this study are current outpatients at the salt lake va. the spouses were recruited through the veteran participants. as the principal investigator (pi), i have established professional relationships with several va and university of utah researchers who work with va providers in the physical therapy/occupational therapy clinic (pt/ot). this study was made known to the pt/ot providers through a study flyer (appendix a) that university of utah researchers shared with the va providers. i then contacted one of the providers about potential assistance with recruitment. the provider, in turn, shared the study information with several of her veteran patients who met the study criteria. in addition, veteran participant was recruited through the army wounded warrior project manager for the salt lake region, and veteran participant was recruited through word of mouth. all veteran participants in this study are current outpatients at the salt lake va. spouses were recruited through their veteran husbands. sources of data participant interviews the goal of interviewing participants was to “capture the deep meaning of [their] experience in [their] own words” (marshall & rossman, , p. ). to have an effective interview, it was important to ensure that the interviewee was as comfortable in their surroundings as possible (gillham, ; richards & morse, ). to ensure this, participants were given the option of meeting with me at either the va or the participant’s home. i began the initial interview by getting to know the participant and explaining the purpose of the research study. participants were asked to consent to an audio recording of their interview, which was then used as a source of data in the research study (appendix b). i encouraged participants to ask any questions they had and to stop the interview at any time if they felt uncomfortable or did not wish to proceed. participants were also asked to provide a small amount of demographic information (appendix c). following completion of the demographics questionnaire, the interview began with me asking questions based upon a semistructured interview guide created for the purposes of this study (appendices d and e). having a semistructured guide allowed me to gather information pertaining to the goals of the study while also following the lead of those being interviewed. at the completion of the interview, participants were thanked and given a gift card for their time. interviews lasted approximately - minutes. some participants were asked follow up questions via email. questions for the follow-up email were based upon data that were previously collected. interviews were conducted until i felt saturation was reached. following data analysis, all participants were asked to review the findings of the study to ensure that i accurately reflected the experience of each participant. field notes i kept field notes concerning all interactions and interviews with each participant. field notes were recorded following each interview and allowed me to capture details about the participants, interview locations, atmosphere, interpersonal interactions, and any insights or interpretations gained through the interview process (marshall & rossman, ). data analysis data management successful data analysis begins with proper data management techniques (bloomberg & volpe, ). interviews were transcribed verbatim as soon as possible, saved, and stored securely on a password-protected computer. transcript files were organized according to the participant’s first name or nickname, and the date of the interview. transcripts were analyzed using a manual process. coding specific systematic coding procedures were used for data analysis, which included open coding, axial coding, and selective coding (corbin & strauss, ). codes were represented through a combination of colors and key words (marshall & rossman, ). a coding scheme was created to define each code used (bloomberg & volpe, ). open coding, axial coding, and selective coding are subcategories of coding. open coding first, open coding was used to break data down into categories and subcategories. these categories were developed using a constant comparative approach in which each event/action/interaction was compared to others in search of similarities and differences (corbin & strauss, ; cresswell, ). this stage of coding required the use of various analytic tools, such as questioning the meaning of words, obtaining various perspectives, drawing upon personal experiences, and examining emotions expressed by participants (corbin & strauss, ). axial coding second, axial coding was used to explore the relationships between categories and their subcategories (corbin & strauss, ; cresswell, ). glaser’s ( ) suggestion of examining the causes, contexts, contingencies, consequences, covariances, and conditions related to each category and subcategory were applied. selective coding last, selective coding was used to choose a core category that represented the central phenomenon in the study. all other categories were organized around and related to the core or central phenomenon (corbin & strauss, ). memoing memoing was used throughout the entire data analysis process to record ideas and notes about the data. memoing aided in the process of asking questions and making connections about the data (bloomberg & volpe, ; mayan, ). visual representations of data data summary cards during open coding, data summary cards were used to display each category along with its subcategories. all transcripts were divided according to how each word/sentence/phrase had been coded (bloomberg & volpe, ). the summary cards were then arranged according to categories and subcategories. concept maps during axial and selective coding, concept mapping was used to visually express the relationships and connections between categories, subcategories, and the central phenomenon. concept maps were also used to help identify any holes or gaps in the theory (butler-kisber, ). trustworthiness when conducting research, it is important to know that the data were correct and accurately represented the experience of each participant. lincoln and guba ( ) suggested four principles that must be addressed in order to meet these goals: credibility, transferability, dependability, and confirmability. credibility credibility involves spending long amounts of time with participants and using multiple sources of data and methods (i.e., triangulation) in order to give an accurate description of participants’ experiences. credibility for the current study was established by ( ) spending extensive amounts of time reviewing audio recordings and transcripts, ( ) triangulating various data sources (e.g., interviews, field notes, memos), and ( ) conducting member checks in which the researcher presented the findings and interpretations to each participant and ensured that the findings were consistent with the participant’s experience (cresswell, ). transferability transferability is the ability to transfer information gained from the study to other settings and individuals. transferability was achieved by providing a very detailed and thick description of the reintegration process and components within that process. taking extensive field notes and being immersed in the data allowed the pi to discover a more detailed description of the data. dependability and confirmability dependability and confirmability establish the quality of the data and how much the findings are supported by the data. dependability and confirmability were established through an external audit conducted by another researcher who was not directly involved in the study. this audit helped manage the assumptions of the pi demonstrating that the findings were accurate and could be confirmed by another expert in the field. a variety of conceptions of qualitative research exist, and as such, it is noteworthy to mention that there are competing claims as to what counts as good-quality work. these competing claims revolve around the issue of criteria (e.g., trustworthiness) and how they are used to pass judgment on qualitative research (sparkes & smith, ). lincoln and guba ( ) acknowledge a criteriological view that seeks to judge all forms of qualitative inquiry against a preestablished notion of trustworthiness (e.g., credibility, transferability, dependability, and confirmability), noting that the more techniques that are used, the more trustworthy the study. it is important to realize that perfect studies are seldom, if ever, conducted and that all investigations have strengths and weaknesses (sparkes & smith, ). alternatively, relativism suggests that criteria should not be determined in advance of any particular piece of inquiry and rejects claims that anyone can gain access to a social reality in ways that are independent of our interests, purposes, and languages used. as such, sparkes and smith ( ) indicate that reality itself and method alone cannot provide a referent point for sorting out claims to knowledge, or “good” and “bad” research. from this perspective, smith ( ) suggests that the researcher describe what one might do, rather than mandate what one must do across all contexts and on all occasions prior to any piece of research being conducted. ethical considerations approval to conduct the study was gained from the institutional review board (irb) at the university of utah. my main goal was to ensure that each participant was treated ethically, had a positive experience, and had the freedom to share their experiences. risk to subjects there were minimal risks associated with participating in this study. i anticipated that some participants might experience unpleasant feelings as a result of sharing their experiences and other sensitive information with the me. consequently, i (being a mental health provider) offered several methods of contacting me for continued support and appropriate referrals. there was some risk that identifying participant information could be seen by others on the research team; however, the risk was very minimal. precautions were taken to store all identifying information securely. protection against risks participation was completely voluntary. individuals who decided to participate were asked to sign a consent form that explained the study procedures, risks, and benefits to the participants (appendix b). even if a participant signed the consent form, they were still free to withdraw from the study at any time and without providing a reason. participants were allowed to skip any questions that they did not wish to answer, and they were able to withdraw from the study at any time without any consequence. this, hopefully, helped alleviate any concerns that participants may have had with participating in the study. participants were also asked to consent to an audio recording of their interview, which was used as a source of data in the research study. the audio files were labeled by the participants’ first names or nicknames in order to keep all of their information confidential. for further protection, recordings and any other study related materials (e.g., field notes, transcripts, memos) were kept in secured files. computer data records were also password protected. only i had access to participant contact information. results of the study may be published or presented at conferences; however, participant full names and other identifying information will be kept private. potential benefits the potential benefits for participants included helping researchers understand how to better help those recovering from traumatic injuries. while there were no guaranteed benefits to the participant, it was expected that participants would benefit by learning more about themselves and resilient reintegration after a major life disruption. participants were compensated with a $ target gift card for their participation. conclusion due to the vast number of military troops returning from iraq and afghanistan, there has been an increased demand for services to those who have sustained amputations. as such, there has been a growing body of research pertaining to the struggles that returning military personnel face following traumatic combat-related injuries. this study asks the questions, “what is the nature of individual lived experiences of sustaining a combat-related amputation? in what ways, if at all, has the amputation affected veterans’ body esteem? how do veterans and their spouses describe the role of personal resilience in the paths of reintegration?” this qualitative study utilized a purposeful sample of military veterans and their spouses to develop an in-depth understanding of their reintegration process following amputation. this qualitative inquiry will add to a growing body of case study literature, and although qualitative findings are not generalizable to larger populations, the findings can provide transferability to similar populations. additionally, the profound understanding that results from such inquiry can certainly contribute to future military resilience education, maintenance, and enhancement that has not yet been fully explored and implemented, especially with respect to the altered physical body following amputation. such research can then serve to strengthen existing resilience programs and recovery efforts for military service members and veterans (see appendix h for a list of existing military resilience programs) references aamot, s. 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( ). stars: strategies to assist navy recruits’ success. military medicine, ( ), - chapter the impact of disability on body esteem: a review of the literature abstract the purpose of this review was to examine the existing literature regarding body esteem in individuals with various disabilities in order to highlight principal findings and identify areas that require further research. methods: relevant articles were located through pubmed, psychinfo, psycharticles, sciencedirect, and the screening of bibliographies. results: the available data suggest that individuals with disabilities, which include but are not limited to ) limb amputations, ) other acquired mobility injuries (e.g., orthopedic injuries, spinal cord injuries), ) burns and scars, ) other visible impairments or alterations (e.g., cancer/cancer treatment, cystic fibrosis, scleroderma), ) posttraumatic stress disorder (ptsd) (and pervasive comorbid disorders), and ) acquired brain injury (abi) (e.g., traumatic brain injury (tbi), stroke), tend to have a significant deterioration of perceived body esteem. conclusion: further exploration regarding the manner in which individuals with disabilities interpret and perceive their body esteem is necessary in order to provide an increased variety of effective interventions and treatments. introduction the impact of disability on body esteem is an important area of investigation that merits additional attention in the research literature. concerns about physical appearance are of great importance in a society that places a high premium on physical attractiveness, and perceived physical attractiveness is associated with many important social advantages and personal characteristics (lanlois, kalakanis, rubenstein, larson, hallam, & smoot, ). body esteem may play a significant role in the lives of individuals with disabilities, hence this subject matter warrants increased investigation. this review identifies known studies that address the effects of various disabilities on body esteem. throughout the literature, definitions of body and body esteem noticeably vary. drench ( ) proposed that body image is the integration of how a person looks to others, and how he/she perceives this appearance (as cited in yuen & hansen, ). drench’s definition emphasized the influence that societal values have on body image. according to taleporos and mccabe ( ), body image can be viewed as the interaction between affective, cognitive, and physical elements of self. taleporos and mccabe ( ) also defined body esteem as the appearance, function, form, and desirability of one’s own body, which is influenced by environmental and individual aspects. these definitions highlight the interplay of body image with identity. thus, the authors defined body image as a blend of an individual’s perspective and the environmental influences on the body. their definitions point to the link between one’s thoughts about one’s body, and one’s feelings about what the ideal body constitutes. white ( ) explained that dimensions of one’s body experience are highly subjective, and do not necessarily reflect objective reality. as such, they comprise thoughts, feelings, and perceptions, which are multifaceted, and include elements such as body size, function, and competence. in many ways, body image dimensions are inseparable from feelings about the self, and are inextricably linked with social factors. in this review, body esteem and body image may be interchangeably used, and body esteem will be reviewed based on a psychosocial perspective that is informed by a social model of disability. psychosocial theory provides a framework for understanding the body image concerns of people with disabilities. theory can define concepts such as ‘stigma’ and ‘otherness’ and can integrate the problem of exclusionary social norms and ideals (taleporos & mccabe, ). the social model of disability “challenges the traditional view of disability as a medical tragedy, and replaces it with a view of disability as a social oppression…arguing that disability is socially constructed, not biologically determined” (shakespeare, gillespie-sells, & davies, , p. ). stigma theory also provides one of the earliest and most noteworthy psychosocial perspectives on disability. goffman ( ) built his theory around the concept of stigma that he defined as “an attribute that is deeply discrediting” (p. ). he distinguished between three types of stigma. the first type included abominations of the body, and within this category were the physical disabilities or disfigurements. the second type included blemishes of individual character, such as a mental disorder. he described the final category as a tribal stigma that included religious, cultural, and racial minorities (taleporos & mccabe, ). for purposes of this review, the term disability will encompass limb amputations other acquired mobility disabilities (amd) (e.g., orthopedic injuries, spinal cord injuries), burns and scars, other visible impairments or alterations (e.g., cancer/cancer treatment, cystic fibrosis, scleroderma), posttraumatic stress disorder (ptsd) (and pervasive comorbid disorders), and acquired brain injury (abi) (e.g., traumatic brain injury (tbi), stroke). with regard to limb amputation, adaptation to an altered body can cause anxiety and body esteem distortion. such distortion has been found to be associated with depression, decreased quality of life, and lower levels of self-esteem (breakley, ; fisher & hanspal, ; horgan & maclachlan, ; rybarczyk, nyenhuis, nicholas, cash, & kaiser, ). other acquired mobility injuries also present struggles for individuals regarding their changed bodies and associated altered functions, activities, and societal roles. sheldon et al. ( ) found several themes in their study of male subjects with acquired spinal cord injuries, including not feeling whole, having changes in the ways they are able to do things, feeling embarrassed with public staring, and being overly worried about appearance. lack of sensory input/motor experience and muscle atrophy also contribute to a change in the perception and evaluation of one’s body, and can have a negative impact on one’s identity (trieschmann, ). any grieving is not only for the loss of body functioning, but also for the loss of self-identity (davidhizar, ). burn injury is a sudden, often catastrophic event with implications for immediate (e.g., pain) and long-term (e.g., disfigurement) adjustment (patterson et al., ). burns severe enough to warrant hospitalization require survivors to cope with many physical and psychosocial challenges. numerous survivors suffer from significant body dissatisfaction due to related changes in appearance, and sometimes permanent scarring (patterson et al., ). although the psychosocial impact of alterations in appearance is well established (browne et al., ; fauerbach et al., ; riva & molinari, ; tudahl, blades, & munster, ), researchers have just begun to look at the impact of different types of coping on adjusting to acute changes in appearance (fauerbach et al., ). other visible impairments or alterations may be due to disabilities such as cancer, side effects of cancer treatment, cystic fibrosis, or scleroderma. in some instances, changes to appearance may be sudden and unexpected, where other circumstances may include changes that develop over a period of time. concerns about appearance may initially be secondary to those relating to survival and life-saving treatment. drawing conclusions about the psychosocial impact of an acquired visible difference can be intimidating given the variation in type, severity, visibility, body sites affected, degree of permanence, and treatment courses, together with the numerous individual and social characteristics that contribute to body image and adjustment (rumsey, ). however, despite this complexity, there is a consensus regarding the difficulties that are reported, the most frequent of which relate to difficulties with social interaction and negative self- perceptions (rumsey & harcourt, ). thousands of military personnel are currently returning from overseas war zones, and trauma is becoming an everyday subject (kneipp, kelly, & wise, ). in addition to combat, other incidents such as rape/sexual abuse, auto accidents, and natural disasters can produce traumatic reactions (vieweg et al., ). rates for ptsd prevalence among the general u.s. population vary between % and % (hoge et al., ; palmieri et al., ). moreover, breslau et al. ( ) reported that approximately . % of u.s. citizens are exposed to at least one traumatic incident in their lives. trauma victims may develop a range of disorders including major depression, generalized anxiety, and panic disorder, as well as ptsd (beitchman et al., ; browne & finkelhor, ; rowan & foy, ). trauma may alter one’s capacity to regulate arousal levels, which in turn can alter the concept of self. body image is a part of self- concept. consequently, distortion in body image may be vastly influenced by traumatic experiences (kneipp, kelly, & wise, ). an acquired brain injury can have a profound effect on the survivor’s self- concept. traumatic brain injury is the leading cause of disability for persons under years of age, affecting nearly million americans every year (tarconish, ). when an individual experiences a brain injury, he or she may face physical, behavioral, emotional, cognitive, and personality changes, depending on the severity of the injury and the region of the brain that is damaged (farace & alves, ). most of the consequences of tbi are invisible, including those that affect cognition (brain injury association of america, ). individuals with tbi tend to have significantly poor views of postinjury self-concept (tyerman & humphrey, ; wright & telford, ), especially when compared with neurologically intact controls (brinkman & hoskins, ; ellis-hill & horn, ; kravetz et al., ). therefore, the aim of this manuscript was to conduct a review of the research assessing the effects that the aforementioned disabilities have on body esteem, and to suggest directions for future research. methods search strategy relevant articles relating to body esteem and disability were located through pubmed, sciencedirect, psychinfo, psycharticles, and the screening of bibliographies. text word and thesaurus terms were used to maximize identification of relevant articles. the following keywords were searched using boolean logic: ( ) body image, body image disturbance, self-image, self-concept, self-perception, appearance ( ) disability, disabled (attitudes toward), disabled personnel, ( ) injuries, trauma (physical), posttraumatic stress disorder, trauma, emotional trauma ( ) traumatic brain injury, brain injury (traumatic), ( ) burns, ( ) cancer screening, oncology, ( ) spinal cord, spinal cord injuries, physical disorders, ( ) amputation. additional references cited in retrieved articles or relevant review articles were also obtained. inclusion and exclusion criteria documents included were ( ) published in english in a peer reviewed journal, ( ) theses/dissertations, ( ) conference presentations, ( ) books, and ( ) reputable websites. information covered included ( ) body image, body esteem, self-concept, ( ) the description of different disabilities in adults and children, and ( ) the relationships between body esteem and disability. exclusion criteria were articles that were not related, directly or indirectly, to the core concepts of body esteem and disability, and any material that was not produced in, or translated into, english. review procedure abstracts were reviewed for relevance, and full articles obtained where appropriate. manuscripts were then separated into the following categories: ( ) limb amputations, ( ) other acquired mobility injuries (e.g., orthopedic injuries, spinal cord injuries), ( ) burns and scars, ( ) other visible impairments or alterations, ( ) posttraumatic stress disorder (ptsd) (and pervasive comorbid disorders), and ( ) acquired brain injury (abi) (e.g., traumatic brain injury (tbi), stroke. all data were synthesized together to underscore the connections between body esteem and disability. results and discussion there were six subtypes of disability contained within the reviewed articles, including ) amputation, ( ) other acquired mobility injuries, ( ) burns and scars, ( ) other visible impairments, ( ) ptsd), and ( ) acquired brain injury. the most notable issues pertaining to body esteem, body image, and self-concept are presented. amputation in western cultures, body image seems to be based on youth and physical attractiveness. this emphasis can overshadow other personal attributes (taub, blinde, & greer, ). the importance given to the physical body may have a negative impact on people with an amputation, especially on body perception (sousa, corredeira, & pereira, ). evidence suggests that attitudes toward people with physical disabilities are generally negative, simplistic, and discriminative (arbour, latimer, ginis, & jung, ). blinde and mcclung ( ) proposed that sports participation aids individuals with disabilities to transform their body perceptions with respect to their physical characteristics. perception of everyday reality depends on one’s point of view of the world and the body’s way of being-in-the-world. the actions of the body construct a world of social relations (sousa et al., ). in this way, the body can only be seen as deficient by comparison, assuming that others’ views are considered important (crossley, ). a person with an acquired amputation experiences a fundamental being-in-the- world change that creates a need to relearn and reformulate ways of living life. the loss of a limb is perceived as a loss of part of the self, and as a loss of the “lived-body” (goodwin, thurmeier, & gustafson, ; senra, oliveira, leal, & vieira, ). body image is embedded within historical, cultural, and social settings, and it is responsive to everyday experience (sousa et al., ). disability is very much situational and contextual, and is dependent on the meanings given to it (oliver, ). the relationship between body and aesthetics in a society dominated by the sense of vision makes people the arbiters of beauty, desire, goodness, and truth (jenks, ). the “gaze” has the power to either fix an identity or to condemn an individual to an identity (sousa et al., ). the body is also viewed as a means for being productive. people with disabilities have emphasized how important it is for them to work, not only to provide stable income, but also as a means of maintaining self-respect and giving meaning to life (schoppen et al., ). after an amputation, one is faced with loss of functionality, and often times, loss of ability to continue working, which then can have a profound effect on self- concept. the incidence of lower-limb amputations has historically been much greater than that for upper-limb amputation (gregory-dean, ), and the majority of all amputations have occurred in older adults, as a complication of diabetes (reiber, pecoraro, & koepsell, ), congenital limb deficiency, vascular insufficiency, cancer, and traumatic injury (murray & fox, ). although all individuals with amputations face major physical, emotional, and social adjustments, adaptation to adjustments seems to vary widely between individuals (akyol, tander, goktepe, safaz, kuru, & tan, ; williamson, schultz, bridges, & behan, ). social discomfort and body image anxiety tend to be associated with a poor adjustment in terms of greater activity restriction, depression, and generalized anxiety (horgan & maclauchlan, ; mathias & harcourt, ). breakey ( ) surveyed people with lower limb amputations to examine their psychosocial wellbeing and self- perception. a significant correlation was found between body image and life satisfaction, indicating the more negative a person feels about his or her body image, the less satisfied he or she is with life. fisher and hanspal ( ) found that body image disruption, depression, and anxiety were common for young people with traumatic amputations. rybarczek et al. ( ) indicated that psychological maladjustment is common among adults with leg amputations, and that some individuals with amputations feel that other people reject them because of their disability. we hypothesized that poorer psychosocial adjustment to an amputation would be predicted by higher scores on the amputation- related body image scale (arbis), an -item scale that addresses specific issues related to social discomfort with regard to the appearance of the prosthesis and/or the exposed stump. we believed that the highly significant results obtained in their study were likely related to their use of this scale that addressed body image issues that are specific to the amputation rather than global body image disturbances. in summary, the body image experiences of individuals with an acquired amputation present distinct degrees of adjustment to a new reality. social barriers that people with amputation have to face on a daily basis become apparent in prejudiced and discriminatory conceptions that have been embedded in a society that struggles to accept body differences. other acquired mobility injuries traumatic injuries (other than limb amputation) resulting in a sudden disruption of mobility and body control may lead to an alteration of body integrity and appearance. in many individuals with spinal cord injury (sci), the lack of sensory input and motor experience, and muscle atrophy contribute to a changed body perception and evaluation (trieschmann, ). jackson ( ) reported that body image is an important factor related to health behaviors in sci, and that individuals with less severe sci have higher ratings of appearance satisfaction on several body image subscales. sci rehabilitation has focused primarily on addressing physical impairments, often leaving patients to deal with the social and psychological issues that arise after injury (renwick & yoshida, ). body image disturbances can interfere with activities of daily living, social roles, and engagement in work (drench, ; keppel & crowe, ; van deusen, ). in paraplegia, patients have commonly reported feelings that their body feels larger than actual size (conomy, ; evans, ). some studies indicated that physical performance failure, combined with negative societal assumptions, provided an unstable foundation from which an individual living with a changed body had to build a new self- concept (corbin & strauss, ; yoshida, ). other studies exploring the perspectives of individuals with acquired sci often reported negative changes in quality of life due to adaptations to disability that they had to make (bach & mcdaniel, ; chau et al., ; kothari, ; manns & chad, ; martz et al., ; reitz et al., ; smith & sparkes, ; song, ). sheldon, renwick, and yoshida ( ) found three themes that emerged in their study with men who had sci: changes in self and body, interactions with the public, and decisions and actions people take. these changes reflected the changes in body image after sci and the alterations in self-concept that the men had experienced. not feeling whole was also an emerging subtheme where the participants reported a disconnection between parts of their bodies that still function and parts that were affected by the sci. overall, the men discussed the ongoing struggles to achieve acceptance of their new bodies. another study with adult males with sci highlighted the negative impact of physical disability on body image (romeo, wanlass, & areamas, ). using the derogatis sexual functioning inventory (dsfi), the study revealed that participants scored lowest on body image compared to the other dsfi scales, and the mean scores were significantly lower than for the nondisabled normative group. yuen and hanson ( ) found that individuals with mobility disabilities are exceptionally concerned with their physical appearance, go to great efforts to wear attractive clothing, and use appearance strategies (e.g., hiding atrophied body parts with clothes) to maintain a sense of normalcy. furthermore, the authors concluded that when a disability is present, it is more difficult to evaluate one’s overall health since the injury itself may diminish the perception of being in good health. thus, more vigilance may be needed to maintain health, and could interfere with any ability to form positive perceptions concerning body image and health. treicshmann ( ) reported that the physical, social, and emotional dimensions of the body have a significant role in identity formation, so the “failed body” of an individual with sci has a profound impact on self- concept. the repeated experience of failure then leads to negative body perception. dewis ( ), in a study with young people with recent sci, reported two emerging themes with regard to body image. the first was a concern with normalcy and being valued, and the second was the use of deliberate strategies to maintain a sense of normalcy in physical functioning and appearance. chau et al. ( ) described a framework for understanding the unique experiences of women with sci and how they reclaim comfort toward their changed bodies. the framework consisted of three phases: (a) discomfort with changed body; (b) moving toward comfort with changed body; and (c) comfort with the changed body. the authors indicated that the participants moved in and out of each phase multiple times as they moved toward more permanent acceptance of their bodies. sci is one of the most catastrophic events that a human being may experience. in one instant, the injured person changed from an independent, self-sufficient, contributing individual to a patient dependent on various mechanical devices and a multitude of medical personnel. after surviving the trauma, the person faces a lifetime of possible complications and issues related to body dissatisfaction. burns and scars individuals who have experienced severe burns are often assumed to be at risk for poor body esteem in comparison to the general population because of sudden changes in their appearance related to burn scars. burn survivors not only face the challenge of mourning the loss of their preinjury appearance and accepting their altered appearance, but also are at risk of experiencing stigmatizing behavior, such as startled responses, stares, avoidance, unsolicited questions and comments, teasing, and rude behavior (beuf, ; blakeney, robert, & meyer, ; bull & rumsey, ; connell, coates, doherty-poirier, & wood, ; lovegrove & rumsey, ; macgregor, ; pruzinsky & doctor, ; solomon, ; tarnowski & rasnake, ; thompson & kent, ; thompson, heinberg, altabe, & tantleff-dunn, ;). the cognitive-behavioral model of body esteem disturbance assumes that both sociocultural factors and psychological processes interact to produce and maintain negative body esteem. a person negotiates body esteem in a sociocultural context where he or she receives many different cues about the importance of appearance, and social tolerance of deviation from societal standards of appearance (pruzinsky & doctor, ; thompson et al., ; walters, ). these standards are often culture specific and tend to change over time. (cash & henry, ; thompson et al., ). other distinctions in appearance (e.g., cleft palate, scarring due to burns, obesity) are considered socially unacceptable, and consequently, people with these visible differences are often stigmatized (bradbury, ; rumsey et al., ; thompson & kent, ). both thompson et al. ( ) and partridge ( ), leading theorists on the process of adjusting to acquired disfigurement, have proposed a staged process of adapting to unexpected alterations in appearance. the process implies that people with burn injuries will go through an initial developmental period in which body image will worsen over time as the person struggles to accept physical changes that are out of his/her control, and will develop the social skills necessary to cope with newly experienced social stigmatization. furthermore, the authors found that body image mediated the relationship between preburn and postburn psychosocial functioning, and they proposed that adjusting to appearance changes is an integral part of adapting after a severe burn. thombs and colleagues’ ( ) study supported this research. living with scars can be particularly challenging in a sociocultural context that puts a high premium on physical attractiveness (beuf, ; j.k. thompson et al., ). negative feedback regarding appearance can take other indirect forms such as pointing, whispering, ignoring, avoiding, and job discrimination (beuf, ; macgregor, ; pruzinsky & doctor, ). the cognitive-behavioral model of body esteem also suggests that certain psychological mechanisms maintain low body esteem (cash, ; newell, ; rosen, ). evidence reveals that people who are self-conscious about their appearance tend to process information and behave in ways that confirm their negative assumptions about their appearance. for example, strenta and kleck ( ) conducted a study where they placed artificial facial scars on participants. without the participants’ awareness, they removed the scars from some of them before the participants entered into an observed social interaction. participants who believed they were scarred perceived others’ reactions to them as being more negative. this suggests that people with disfigurements may also process information and behave in a way that confirms their belief that their physical distinction makes them socially unacceptable, and therefore has a negative impact on body esteem. consistent with the cognitive-behavioral model of body esteem, lawrence, fauerbach, and thombs ( ) found that self-rated importance of appearance moderated the relationship between subjective scar severity and body esteem among adults with burn scars. for individuals who indicated their appearance was of little importance, subjective scarring had a low correlation with body esteem. for individuals who were highly invested in their appearance, scarring was highly related to body esteem. similarly, lawrence et al. ( ) conveyed that burn characteristics are less important than social and emotional variables in determining the body esteem among burn survivors. these results supported the hypothesis that self-acceptance and social comfort are more important than burn severity and scar location in predicting body esteem. in an earlier study, orr, reznikoff, and smith ( ) measured depression, body esteem, self-esteem, and social support in burn survivors between the ages of and years. they found that body esteem was unrelated to burn size, burn location, or gender; however, body esteem was positively related to self-esteem and social support from friends, and was negatively correlated with depression. the social nature of body esteem is consistent with the dominant model of adaptation to disabilities in the rehabilitation psychology literature that emphasizes the contextual and interactive nature of adjustment to disabilities. thriving with differences such as burn scars is a function of the person- environment fit (dunn & doughery, ; dunn & elliot, ). if a burn survivor learns to cope with negative body esteem by avoiding exposure to his or her body and social situations, the symptoms of negative body esteem are likely to get worse over time (newell, ; thompson & kent, ). screening is particularly important among children who may suffer in silence because they do not have the social or communication skills to ask for help with body esteem and social problems related to burn scars (lawrence, rosenberg, & fauerbach, ). body esteem is determined in part by a series of appraisals about aspects of one’s appearance. satisfaction with one’s appearance is determined not only by one’s appraisal of one’s appearance, but also by a decision about the importance of physical appearance (cash & pruzinsky, ; davis, dionne, & shuster, ; mendelson et al., ; thompson et al., ). those who have physical disabilities in combination with a belief that physical appearance is highly important are at greater risk (mendelson et al., ). lawrence, fauerbach, and thombs ( ) found that for those who believed that their appearance was not important, the relationship between burn scar severity and body esteem was small and statistically nonsignificant. for those who rated physical appearance as very important, the relationship between scar severity and body esteem was very strong. progress has been made regarding the empirical understanding of the role body image has in the long-term psychological adjustment of burn survivors. measurement of these issues and related matters has been enhanced with the development of psychometrically sound tools such as the perceived stigmatization questionnaire, the social comfort questionnaire, and the satisfaction with appearance scale (fauerbach, pruzinsky, & saxe, ). other visible impairments or alteration a close relationship between appearance and self-concept in the general population has been documented in the literature (grogan, ; harter, ). the connection between appearance and self-concept for people with visible impairments and alterations has been supported by a range of studies over time (kent & thompson, ). the impact of cancer and its treatment on body esteem is dependent on characteristics of the disease and treatment, as well as chronological age and development (fan & eiser, ). as survival rates improve, there has been an increased focus on long-term adjustment to cancer and cancer treatment (evans & zeltzer, ). adaptation to body alteration is a dynamic psychosocial process, and although cancer and treatment would be expected to have adverse consequences for body image, empirical evidence has been somewhat inconsistent (white, ). some studies have found no significant difference between cancer patients and controls with respect to body image disturbance (beardslee et al., ; calaminus, ; jamison et al., ; langeveld et al., ; puukko, sammallahti et al., ; weigers et al., ). other studies found significant differences in various aspects of body image and visible differences. enskar et al. ( ) reported that major changes in appearance due to cancer and the treatment were very hard to live with for females, especially with respect to hair loss, short stature, and weight gain. hair loss (alocepia) has been ranked third after vomiting and nausea as the most troublesome side effect of chemotherapy (coates et al., ). in a study by tierney ( ), alopecia was ranked above vomiting. especially in women, hair is a part of the sense of self and personal identity. hair loss due to cancer chemotherapy has been shown to change patients’ self-concept and body image (baxley et al., ). larouche et al. ( ) indicated that cancer survivors believe that people stare at them because they do not look normal. as a result, they go to extra measures to maintain a sense of normalcy, avoid social situations, and constantly feel the need to test the safety of their environment. madan-swain et al. ( ) reported that survivors felt extremely uncomfortable in their own bodies, and they felt unresolved. additional studies support similar findings (mattsson et al., ; mccaffrey, ; puukko, hirvonen et al., ; woodgate, ; wu et al., ; munstedt et al., ). white ( ) suggested that visible changes that affect the head, neck, or eye, and consequences of surgical treatment for cancer, chemotherapy, or radiation often cause body image disturbance. additionally, a substantial number of women have described extreme dissatisfaction associated with mastectomy scars, and discontent with their prostheses (maguire et al., ). other studies support similar findings of dissatisfaction with appearance, perceived loss of femininity and body integrity, reluctance to look at one’s self naked, and feeling less sexually attractive (bartelink et al., ; beckmann et al., ; cohen et al., ; ganz et al., ; ganz et al., ; de haes et al., ; hopwood, ; kemeny et al., ; lasry et al., ; pozo et al., ; sanger & reznikoff, ; steinberg et al., ; wellisch et al., ; white, ). in one of a few studies that included noncancer comparisons, women with mastectomy and chemotherapy reported significantly more body image dissatisfaction and feminine self-image concerns than women who had a negative breast biopsy, had been treated for gall bladder disease, or healthy women (penman et al., ). fobair et al. ( ) also reported that substantial proportions of young women with breast cancer experienced difficulties with sexual functioning and body image. also, people with cystic fibrosis tend to have delayed onset of puberty, low body weight, are short in stature (erskine et al., ; lai, ; wenninger et al., ), and experience body image disturbances that contribute to them engaging in risky activities, like refusing to take nutritional supplements (robertson, ) or abusing anabolic steroids (morris, ledson, & walshaw, ). additionally, people with scleroderma, which is a progressive connective tissue disease, often have disfiguring changes in their appearance in areas, like the hands, that create extreme social discomfort (heinberg et al., ). these changes are similar to those caused by burn injury; however, unlike burn scarring which is relatively static over time, scleroderma is progressive, so the body image changes vary, and likely worsen over time (heinberg et al., ). scleroderma patients have reported greater body image dissatisfaction than those hospitalized for severe burn injuries (benrud-larson et al., ). posttraumatic stress disorder (ptsd) ptsd, a mental health diagnosis, was initially used to describe psychological suffering experienced by many vietnam veterans who were returning from combat. numerous studies have demonstrated that the diagnosis of ptsd captures essential elements of the suffering caused by traumas like rape, motor vehicle accidents, child abuse, torture, child abuse, and combat experience (van der kolk, ). people with ptsd tend to suffer from ) a lack of a predictable sense of self with a poor sense of separateness, and a disturbed body image; ) poorly modulated affect and impulse control, including aggression against self and others; and ) uncertainty about the reliability and predictability of others (van der kolk, ). researchers have explored the role of traumatic experiences in those who have been diagnosed with eating disorders, which are common comorbid conditions with ptsd, and concluded that a distorted body image is a salient issue in this relationship (weiner & thompson, ; wenninger & heiman, ). kneipp, kelly, and wise ( ) described trauma in three dimensions: avoidance (defensive avoidance), hyper- arousal (anger/irritability), and impaired self-reference. the authors suggested that trauma diminishes one’s capacity to regulate his/her arousal levels, which in turn can change his/her concept of self. a number of related studies suggest that a strong link exists between trauma and body shame (thompson, wonderlich, & crosby, ; truer, koperdak, rozsa, & furedi, ; white & grilo, ). another study suggested that most traumas involve boundary violations, loss of autonomous action, and loss of self- regulation (van der kolk, ). the link between ptsd and body image disturbance is emphasized within this context. weaver and colleagues ( ) studied ptsd and body image in female victims of intimate partner violence (ipv). ipv-related injury has been associated with increased risk of developing ptsd (kilpatrick et al., ; resnick, kilpatrick, dansky, sanders, & best, ). one third of women who live through ipv receive some form of injury, and after injuries have healed, physical appearance may be altered with residual marks and scars (tjaden & thoennes, ). scars from injuries such as facial lacerations have also been associated with increased appearance-focused concerns (tebble, thomas, & price, ). body image distress could be evoked by seeing the injury, or by others’ responses or questions regarding the injury, and could lead the individual to avoid the injury and other trauma cues. avoidance may then have a role in the development and maintenance of ptsd (weaver et al., ). dr. peter levine, founding practitioner of somatic experiencing (se), suggests that trauma is treated in the body, not the mind (levine, ). he explains that people rarely die from the trauma itself, but the failure to neutralize the experiences and restore balance to the body. furthermore, he states that wherever there is war or conflict of any kind, there is a “trauma vortex.” a trauma vortex is set in motion when unresolved trauma becomes nondischarged energy in the body, thus creating body disturbance. this phenomenon compounds when events occur that rekindle previously unresolved trauma, reopening a flood of memories of every past injury and loss. given the increase in the number of individuals who have experienced trauma, coupled with the increasing numbers of individuals experiencing body image/body esteem issues, continued efforts in this field of research remain crucial (kneipp et al., ). acquired brain injury (abi) emotional disturbances are recognized as a common development following acquired brain injury, such as traumatic brain injury (tbi) and stroke. stroke has been a leading cause of focal neuropsychological impairment in adults (keppel & crowe, ). stroke-related impairments have can severely affect young people’s perception of their body, forcing them to change their self-concept, and threatening their ability to engage in social settings (keppel & crowe, ). consistent findings reveal that lowered self- esteem and body esteem are significantly correlated with affective disorders in both acutely and chronically disabled populations (anderson & antonak, ; hogg, goldstein, & leigh, ; langer, ; levine, van horn, & curtis, ; outland & coonerty, ). keppel and crowe ( ) found that young people who had experienced their first stroke reported that their physical self-esteem was significantly, negatively affected following stroke. their physical attributes were highly regarded and their loss or impairment left them with feelings of inferiority, and reduced their self- respect. tbi represents the signature injury of the iraq and afghanistan wars, and has become a noteworthy issue facing military service members and veterans (defense and veterans brain injury center, a). the department of defense has identified approximately , service members with tbi since january (daniel, ). according to the center for disease control ( ), roughly . million individuals experience a traumatic brain injury annually (cdc estimates of tbi do not include injuries documented at the u.s. department of defense or u.s. veterans health administration hospitals). falls and motor vehicle/traffic-related incidents are the leading causes of tbi in the u.s., with men ages to years being the most frequently diagnosed (faul, xu, wald, & coronado, ). for active duty military personnel in war zones, blasts have been found to be the main cause of tbi (champion, holcomb, & young, ). a necessary adjustment for individuals with tbi is addressing the change in the body’s appearance and functioning. physical, cognitive, and psychosocial limitations can negatively affect the self-concept and one’s ability to self-reflect. thus, the survivor may lack motivation to work towards goals, and may be less able to self-regulate behavior (leary & tangney, ). vickery et al. ( ) found that tbi survivors frequently develop poor self-concept, self-esteem, and perception of the body. howes, edwards, and benton ( ) studied female body image following tbi. they found clear differences between the tbi and comparison groups on a number of measures of body image and psychological health. most notably, % of the tbi group scored above the cut-off point for body dissatisfaction. the same authors also studied male body image following abi, and found that the body parts with which men with abi were significantly less satisfied were appetite, reflexes, muscular strength, physical coordination, agility, arms, and legs. the emphasis on physical effectiveness supports previous work by grant and fodor ( ) that males place physical effectiveness as extremely important when evaluating their body image. the males were also significantly less satisfied with their sex organs and sex drive. this supports previous work that found that men place more importance on bodily functions directly related to sex (franzoi & shields, ). therefore, following brain injury, these areas become the focus of body dissatisfaction. in some cases, body image changes following brain injury are due to perceptual disturbance. however, even those without neurological disturbances have to adjust to an alteration in body image due to other residual illness or disability (drench, ; giles, ). conclusion the purpose of this review paper was to examine the extant literature regarding body esteem in individuals with a range of disabilities. disabilities covered in this paper include the following: ) limb amputations, ) other acquired mobility injuries (e.g., orthopedic injuries, spinal cord injuries), ) burns and scars, ) other visible impairments or alterations (e.g., cancer/cancer treatment, cystic fibrosis, scleroderma), ) posttraumatic stress disorder (ptsd) (and pervasive comorbid disorders), and ) acquired brain injury (abi) (e.g., traumatic brain injury (tbi), stroke). current research suggests that individuals with disabilities experience negative feelings related to body esteem. debate continues in the literature concerning the role of the etiology of the disabilities in body image/body esteem distress and psychosocial adjustment (rumsey & harcourt, ). newell ( ) argued that individuals who have disabilities from birth will have had more opportunity to incorporate their anomaly into their body image to habituate to the responses of others, and to acquire effective coping strategies. people who acquire a disability later in life are forced to confront their reactions to the circumstances surrounding the onset including the loss of their previous appearance and body functioning, and to the changes to their body esteem (bradbury, ). rumsey and harcourt ( ) suggested that strategies should be developed for dealing with the reactions of unfamiliar others, and considerable initiative is required to progress beyond initial encounters to form new relationships. establishing relationships can be perceived as problematic for people who are uncomfortable with their appearance, and once a relationship has been established, concerns about the disability may cause ongoing difficulties. also, the literature appears to be sparse with respect to body esteem and ptsd, and body esteem and tbi. as vast numbers of military personnel are returning from iraq and afghanistan with diagnoses of ptsd and tbi, future research needs to focus on the effects of ptsd and tbi on body esteem, as well as effective treatments. moreover, further exploration of the manner in which individuals with disabilities interpret and perceive their body esteem is necessary in order to provide an increased variety of effective interventions and treatments. finally, further research will be helpful to understand the role of resilience education in the treatment, stabilization, and recovery of individuals with disabilities. references akyol, y., tander, b., goktepe, a.s., safaz, i., kuru, o., & tan, a.k. 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( ). body image and exercise in people with and without acquired mobility disability. disability and rehabilitation, ( ), - . doi: . / chapter qualitative research contributions to military postcombat transition and reintegration: a review of the literature abstract the purpose of this review was to examine the existing qualitative literature regarding military postcombat transition and reintegration in order to highlight principal categories and themes, and to identify areas that indicate further research. methods: relevant articles were located through pubmed, psychinfo, psycharticles, sciencedirect, and the screening of bibliographies. results: the available data indicate a paucity of qualitative inquiries with regard to military postcombat transition and reintegration. common categories and themes have been formulated from analyses of the available qualitative research. four categories have been identified, which include ( ) psychosocial adjustment and coping; ( ) physical disability adjustment; ( ) protective factors; and ( ) transition challenges. several themes have also been distinguished within each category and will be examined in detail within the context of the reviewed qualitative studies. conclusion: future qualitative research should be conducted in order to contribute to a much deeper, richer understanding of individual lived experiences with regard to postcombat transition and reintegration, specifically after traumatic injury. introduction military postcombat transition and reintegration are important areas of investigation that have received little attention in the qualitative literature. the use of qualitative methods can make a substantial contribution to our understanding of various constructs related to postcombat transition and reintegration experiences. in particular, qualitative research addresses two specific shortcomings: the selection of outcome variables, and the challenge of accounting for the specific contexts in which transition and reintegration occur. qualitative methods are shown to be particularly well suited to the discovery of unnamed processes. they study phenomenon in very specific contexts, and they elicit and add power to ‘voices’, which account for unique localized constructions by avoiding generalizations in favor of transferability (ungar, ). qualitative methods have been shown to complement well quantitative studies, achieving a finer grain of the perception of health and coping phenomenon (rank, ). this article reviews and summarizes the qualitative literature with regard to military transition and reintegration. analyses of this research have led to the identification of four major categories, which include ( ) psychosocial adjustment and coping, ( ) physical disability adjustment, ( ) protective factors, and ( ) transition challenges. within the first category, psychosocial adjustment and coping, four common themes have been identified: self and body image, grief and loss, family and mental health issues, and coping with the attitudes of others. the second category, physical disability adjustment, includes three common themes: living with limitations, increased pain tolerance, and normalization of disabilities. the third category, protective factors, encompasses three common themes: meaning making, family and social support, and resilience. finally, the fourth category, transition challenges, embraces four common themes: hyper-vigilance, isolation, employment and educational challenges, and being in two worlds at one time. each of these categories and themes are examined in this review in order to emphasize the powerful nature of qualitative inquiry with regard to providing a much deeper understanding of military individuals’ lived experiences with transition and reintegration following combat deployment. again, it is important to note that there have been very few qualitative studies on the reintegration experiences of military personnel and veterans. also, there is a gap between what the best-designed quantitative instrument can capture and the full rich life of an individual. the effort that goes into widely used instruments and programs are considerable, and they derive their validity in part from their fixed and unchanging nature. thus, in areas of “discovery,” caution is warranted as a rich, descriptive hypothesis-generating approach offers potential value over reliance on hypothesis-testing approaches that have been validated and standardized on populations that may not be a good match for the one under consideration (messinger, pasquina, & griffin, n.d.). qualitative research offers an emphasis on the qualities of entities and on processes and meaning that are not measured in terms of quantity, amount, intensity, and frequency (bourgeault, ; denzin & lincoln, ). methods search strategy relevant qualitative articles relating to military individuals’ postcombat transition and reintegration were located through pubmed, sciencedirect, psychinfo, psycharticles, dissertations and theses, and the screening of bibliographies. text word and thesaurus terms were used to maximize identification of relevant articles. the following keywords and phrases were searched using boolean logic: ( ) qualitative military, qualitative veterans, military phenomenology; ( ) military deployment and disabled personnel, resilience (psychological) and qualitative and recovery, military injury and reintegration, military personnel or veterans or deployment and qualitative and disability management, military personnel and trauma and qualitative; ( ) military transition and injury and qualitative; ( ) military psychology and resilience, military psychology and amputation, military psychology and transition and recovery; ( ) military medicine and qualitative and amputation, military medicine and resilience, military medicine and transition; ( ) disability and rehabilitation and military. in addition, several journals were searched in their entirety for relevant qualitative research, including qualitative social work, qualitative sociology, qualitative health research, qualitative research in sport, exercise and health, qualitative psychology, qualitative research, qualitative studies, and the qualitative report. additional references that were cited in retrieved articles, dissertations, theses, and relevant review articles were also obtained. inclusion and exclusion criteria documents included were published in english for ( ) peer-reviewed journals, ( ) dissertations and theses, and ( ) conference presentations or abstracts. information covered included ( ) the nature, benefits, and contributions of qualitative research to the study of military postcombat transition and reintegration; ( ) major categories and common themes within this qualitative literature; and ( ) recommended future research. exclusion criteria were ( ) articles that were not qualitative in nature or were not related, directly or indirectly, to the qualitative research on the core concepts of military postcombat transition and reintegration, ( ) unpublished research, with the exception of conference presentations or abstracts, and ( ) any material that was not produced in english. review procedures article and conference abstracts were reviewed for relevance, and full articles were obtained where applicable. dissertations and theses were also reviewed, many in their entirety. manuscripts and sections of manuscripts were then separated according to emerging categories throughout all gathered data. four major categories were determined, and thematic findings were outlined from analyses of the four categories. all data were synthesized to underscore the significance of qualitative research regarding military postcombat transition and reintegration. findings and discussion while every individual’s life experience is different, common themes emerged in four major categories throughout the reviewed literature: ( ) psychosocial adjustment and coping, ( ) physical disability adjustment, ( ) protective factors, and ( ) transition challenges. psychosocial adjustment and coping in terms of psychosocial adjustment, there were four central themes that emerged: ( ) self and body image, ( ) grief and loss, ( ) family and mental health issues, and ( ) coping with the attitudes of others. self and body image several of the reviewed qualitative articles discussed issues with self and body image. cater ( ) interviewed servicewomen with combat-related amputations and reported that all indicated that they had to adjust to a new image in the mirror. the amputation was viewed by some of the women as a badge of honor, while others wore a prosthesis as a cosmetic cover, demonstrating a greater need to appear normal. messinger ( ) contrasted two case studies. when one of the soldiers spoke about his injuries, he talked in terms of how he was being forced to reconfigure a sense of himself and who he felt himself to be. the kinds of injuries he received forced him to constantly balance what he had lost against what he still had. pichard ( ) interviewed disfigured servicemen and reported that they need to grieve the loss of their former body as they attempt to accept their new appearance. some feel proud and as though they have become disfigured for a purpose that is greater than themselves. hagerty, williams, bingham, and richard ( ) reported similar findings through nursing interviews with combat-wounded patients. grief and loss grief and loss was a common theme throughout this qualitative literature. cater ( ) indicated that servicewomen grieved over limb loss, but the grieving slowly diminished over time. one woman spoke of being determined to stay alive despite her limb loss and grief because her husband was still struggling with the death of his younger brother the prior year in iraq. other studies included similar themes that related to grief such as feelings of loss, a sense of confusion, struggles to regain a sense of control over their losses, and a need for forgiveness for what was lost in the wars (brunger, ogden, malia, eldred, terblanche, & mistlin, ; graf, miller, feist, & freeman, ; gutierrez, brenner, rings, devore, kelly, staves, kelly, & kaplan, ). family and mental health issues common difficulties among military service members in transition include struggles reintegrating with their families and significant others, as well as financial difficulties, problems with alcohol, depression and anxiety. several studies indicated that familial and marital relationships completely dissolved for some individuals, while other relationships are laden with turmoil and struggles to reintroduce the service member back into the family structure (doyle & peterson, ; graf et al., ; messinger et al., n.d.; verey & smith, ). additionally, graf et al. ( ) indicated that the males in the study have a difficult time resuming the roles of husband and father, and taking up routine family tasks. also, they commonly act overprotective or controlling with the children, have difficulty expressing intimacy, and abuse alcohol as a method of escape from their realities. coping with attitudes of others cater ( ) reported that servicewomen with amputations feared their friends would abandon them and it would be difficult to make new friends due to the changed perceptions of the people around them. finley ( ) reported that one family member described with horror how she had heard friends and neighbors speak about veterans who returned home from the recent wars with troubled minds. another soldier stated that his girlfriend, who had read about ptsd in her training as a veterinary technician, thinks he is crazy, which enrages him. other studies indicated that service members were reluctant to seek mental health assistance because the military in general, as well as peers, would think they were crazy, would label them in their permanent military records, and would think they were not pulling their own weight (ainslie, ; gutierrez et al., ; jett, ; messinger, ; verey & smith, ). finally, rumann and hamrick ( ) reported that student veterans felt that other students did not understand what they had been through and did not know how to approach them, so the student veterans feared what other students thought about their states of mind. physical disability adjustment in terms of physical disability adjustment, three central themes emerged as the qualitative literature was reviewed: ( ) living with limitations, ( ) increased pain tolerance, and ( ) normalization of disabilities. living with limitations burke and utley ( ) conducted a qualitative inquiry with combat-injured veterans who climbed mt. kilimanjaro. the authors indicated that for all of the participants, the added burden of climbing the mountain with the sequel of a functional impairment involved adapting to physical changes acquired as a result of being injured. climbing the mountain with a physical injury involved performing in a difficult and challenging environment ripe with unique stresses that required adapting to limitations. pichard ( ) described how participants struggled with anger and inner conflict over their physical ailments as they came to develop coping strengths to handle their limitations. several studies described how participants worked through the stress of having limitations, how they were able to gain autonomy, how they became accustomed to prosthetic use, and how they overcame the chaos and confusion associated with their injuries (braun, ; brunger et al., ; cater, ; harmon, ; hawkins, cory, & crowe, ; messinger, ; messinger et al., n.d.). increased pain tolerance matthias, miech, myers, sargent, and bair ( ) noted how participants who were dealing with chronic pain appreciated having someone with whom to talk, especially during pain exacerbations, and that this additional verbal support actually increased their ability to tolerate their pain. jett ( ) reported participants’ perceptions of having to deal more effectively with chronic pain and suffering. the participants indicated that the high stress levels of long duration caused by the extreme physical and psychological hardships that troops endured to survive during combat led to them being able to better cope with and tolerate their postcombat pain and suffering. another study supported similar findings (gutierrez et al., ). normalization of disabilities braun ( ) described several factors involved in participants’ decisions to return to work following injuries. the results suggested that postrehabilitation, a small number of servicemen return to combat, but many find it rewarding and normalizing to return to duty in another capacity. many reported that work-related activities that they used to be able to do with their eyes closed where very difficult with a prosthesis or disabling injury, but not impossible to do, and easier to do with practice, as living with the disability became “normal.” mccoy ( ) indicated that spiritual practices and meditation were helpful to participants in beginning to normalize their lives with their injuries. other studies discussed participants’ learning to manage activities of daily living with greater ease, utilizing community resources to support normalization of life with their disabilities, and engaging in adaptive recreation and physically challenging events to overcome feelings of inadequacy and abnormality (brunger et al., ; burke & utley, ; hawkins et al., ; messinger et al., n.d.; pichard, ). protective factors protective factors contribute toward personal resilience and the capacity to adapt to change (cater, ). three major themes arose from the review of the qualitative literature regarding such protective factors for military service members in transition: ( ) meaning making, ( ) family and social support, and ( ) resilience. meaning making in , victor frankl wrote in man’s search for meaning that humans have a psychological need to find or create a sense of meaning and purpose after suffering and loss (frankl, ). cater ( ) reported that participants with an amputation found comfort in having lost their limb in service to their country, and said that surviving the loss of a limb gave them new courage. one participant stated that she gained a new outlook on life, no longer took anything for granted, and believed that losing her leg brought new opportunities. another participant said that she had accomplished more in her life with one leg than she ever would have with two. each of the participants in this study reported that she developed her own personal meaning from her limb loss. ainslie ( ) also indicated that female veterans sought meaning from their traumatic experiences, and that they wanted to share their experiences with others in an effort not only to help themselves, but to help and protect others. such service to others was a powerful way for the participants to feel as though their trauma had meaning and purpose. other studies supported similar themes of participants’ beliefs that their deployments were the hardest times of their lives, they were not going to let their disabilities slow them down, and their military service was well worth it, despite injuries and setbacks, due to personal growth and importance of their service to who they are as individuals (brunger et al., ; finley, ; hagerty et al., ; jett, ; rumann & hamrick, ). family and social support messinger et al. (n.d.) reported that nearly all of their study’s participants were married, or in long-term relationships, and many had children. only participant was not in a partner relationship, but he stated that he was very close to one of his parents and a sibling. the intensity of the participants’ relationships, and the extent to which support (or lack thereof in some cases) drastically affected their abilities to recover and reintegrate, was striking to the researchers. hinojosa and hinojosa ( ) stated that the role of social relationships in health outcomes is an area of growing research importance, and that the veteran’s administration has begun to encourage research programs to more deeply explore the role of family members in veterans’ health outcomes, particularly after the deployed veteran has been away for an extended time. this study further highlighted the importance of military friendships, recreation with friends, and emotional intimacy with partners. other studies revealed that social and family interactions always changed when veterans returned from combat; that veterans seek support from those with similar experiences; that families were very instrumental when they were in the hospital; and that they were motivated to keep going when they were around family, friends, and other veterans who had worse injuries than they had (cater, ; finley, ; graf et al., ; hagerty et al., ; hawkins et al., ; matthias et al., ; rumann & hamrick, ; verey & smith, ). finally, burke and utley ( ) found that participants not only needed the social support, but they thrived on the sense of camaraderie and working together as a team with their families, friends, and military comrades. resilience koenig, maguen, monroy, mayott, and seal ( ) reported that participants encouraged each other to apply their military values to their everyday lives as a way of being proactive and demonstrating courage to overcome absolutely anything. several participants in cater’s ( ) study indicated that they used humor to get through tough times and to help other people relax around their amputations. one participant said that four key factors in her healing process were ( ) actually having a leg to stand on (one leg was amputated), ( ) her belief in god, ( ) being able to joke about things, and ( ) support from her family and fellow national guard soldiers. participants with amputations in the mt. kilimanjaro study (burke & utley, ) responded to the experience of climbing with a sense of determination and inner strength. rather than withdrawing or disengaging from attempts at achieving the goal of getting to the summit, they anticipated success and strived to reach the top of the mountain. all of the participants experienced pain and frustration, but despite limited functional abilities, they showed an unwavering sense of commitment and consistently responded to both favorable and adverse situations on the mountain through proactive efforts. similarly, the female veterans in ainslie’s ( ) study highlighted like aspects of resilience, how they related to the meaning making of their traumas, and how they each used self-determination to press forward. the women all agreed that there are multiple, sometimes unexpected pathways to resilience. other studies highlighted topics such as perseverance; always placing the mission first (a military value); active involvement in community, church, school, and social events; not being afraid to seek mental health treatment when needed; proactively seeking opportunities for growth; and sharing experience, strength, and hope with others (braun, ; brunger et al., ; doyle & peterson, ; finley, ; gutierrez et al., ; hawkins et al., ; rumman & hamrick, ). transition challenges the final category, transition challenges, was quite prominent throughout the reviewed literature. four major themes resulted after careful appraisal of each qualitative report: ( ) hyper-vigilance, ( ) isolation, ( ) educational and employment challenges, and ( ) being in two worlds at one time. hyper-vigilance koenig et al. ( ) interviewed participants who described how they were trained in critical survival skills in a war zone, such as being on guard and vigilant about their surrounding environment all the time. when transitioning back to civilian life, they reported that they maintained this same level of hyper-vigilance, where unfamiliar objects in the street or unanticipated loud sounds evoked the war zone. other participants recounted experiences of reaching for military equipment, such as a firearm, helmet, or body armor, when surprised or caught off guard. because these skills are continuously practiced and reinforced during deployment, on their return home, it is difficult to simply stop being vigilant, despite the absence of obvious external threat. messinger et al. (n.d.) reported similar findings of participants’ descriptions of feeling like they were being besieged and targeted, even though there was no imminent danger. cater’s ( ) female veterans with amputations described having personal safety fears. all of the women in this study were highly trained warriors with combat experience along with training in self-defense. however, after their injuries when they were struggling just to maintain balance, they felt vulnerable all the time. other studies reported similar themes of participants’ constantly feeling vulnerable, feeling the need to be on guard, and maintaining hyper-vigilance all the time (doyle & peterson, ; gutierrez et al., ; rumann & hamrick, ). isolation hinojosa and hinojosa ( ) recounted participant’s account of how he had close friends in whom he confided, but he was reluctant to share his deployment experiences with them, which left him feeling quite isolated. other participants in this study reported similar feelings, and said that people just do not understand unless they have been there. finley’s ( ) participants described an urge to isolate from family and friends, where they appeared to have an involuntary flattening of emotion. one participant described being unable to feel any kind of emotional attachment to anybody. the author explained a second kind of dislocation, the feeling of being cut off from loved ones, and how this feeling was reverberated throughout the tale of almost every veteran who described himself as struggling in the aftermath of deployment. the levels of withdrawal and feelings of being cut off were different depending on the nature and severity of the injuries or disabilities. doyle and peterson ( ) explained that participants often sense a loss of common purpose when they return from deployment, which causes them to feel isolated from family and friends. other studies reported similar findings with regard to isolation and withdrawal (graf et al., ; koenig et al., ; matthias et al., ; rumann & hamrick, ). employment and educational challenges schmaltz ( ) interviewed veterans who had been injured during operation iraqi freedom/operation enduring freedom about their experiences returning to the civilian workforce postdeployment. some participants reported having high expectations that were unmet, and that finding employment was more difficult than they had thought it would be. many said that they did not receive any preferential consideration for being a wounded veteran. others expressed that they had wanted to stay in the military, so they were just looking for a job that would allow them to continue supporting the warfighter. finley ( ) reported similar findings, and added that some participants said that their coworkers were afraid of how to treat them, and they were experiencing the same problems at work as they were at home with regard to reintegration. six participants in rumann and hamrick’s ( ) study described three principal role incongruities that they experienced on campus after returning from combat: military and academic life, the incompatibilities of lingering stress and anxiety with returning to college, and enacting aspects of the student role during deployment and aspects of the military role during college. koenig et al. ( ) included one veteran’s account of having gone from fast-paced work in the military that fostered a sense of connectedness and shared purpose, to low-intensity work, as well as lack of meaningful rapport with colleagues. additionally, participants pursuing college education emphasized the slow pace of traditional academic environments compared to active duty deployment. brunger et al. ( ) described how one veteran’s injuries made him a totally different person, with significant reduction in cognitive ability, that prevented him from efficiently performing in his designated job role, and also increased his sense of frustration. messinger et al. (n.d.) described how some student veterans struggle to integrate in an academic environment because they tend to be older and more mature than other students. finally, braun ( ) described a variety of interrelated conditions within and surrounding the soldier that influence work performance, including cultural, personal, temporal (the time it takes for the wounded service member to heal), virtual, physical, and social conditions. in essence, the transition from deployment back to work or school is multifaceted. being in two worlds at one time rumann and hamrick ( ) reported participant’s reflections on his past and present selves. he concluded, “i think the two biggest problems, being completely separate from each other, that a soldier might have coming back is he either see the two worlds as completely separate and cannot relate them or he tries to attack the problems in this world the same way he attacked the problems in the other world. and you have to find some kind of middle ground” (p. ). other participants said they had to search for a new normalcy between their two worlds, one world being their deployment world, and the other being their home world. doyle and peterson ( ) reported that their participants struggled with transitioning from their deployment duties to their home duties, like who was going to pay the bills, take out the trash, or mow the lawn. participants described knowing what they were expected to do down range, but not at home once they returned. they often struggled with desiring to be in two places at the same time. other studies described similar struggles of vacillating between two worlds (finley, ; graf et al., ; hinojosa & hinojosa, ; koenig et al., ). conclusion the purpose of this review was to examine the qualitative literature that has focused on military service members and veterans in postcombat transition and recovery situations. four major categories emerged from this review, which included ( ) psychosocial adjustment and coping; ( ) physical disability adjustment; ( ) protective factors; and ( ) transition challenges. several themes also developed within each category. individual accounts were examined and supported by other similar descriptions. each of these categories and themes emphasized the powerful nature of qualitative inquiry with regard to providing a much deeper understanding of military individuals’ lived experiences with transition and reintegration following combat deployment. while qualitative research results cannot be indicative of all or even other service members and veterans who are going through transition and reintegration after combat trauma and injury, it does suggest that these individuals tend to report similar experiences through qualitative inquiry that could be transferred, as opposed to generalized, to like populations. future research several opportunities abound for future research within the realms of qualitative inquiry and postcombat transition. burke and utley ( ) suggested more exploration of the role of self-directed, challenging activities as a way of improving the experience of recovery and adjustment following serious combat injury. a better understanding of the recovery process and the potential role of a challenging and meaningful goal as a path to recovery may aid the return to a fully functional life. hawkins et al. ( ) recommended similar future research and proposed that the role of autonomy be addressed as a motivating factor for participation in a proactive lifestyle. ainslie ( ) recommended that future research focus on gathering many more personal histories of returning veterans that would enhance and potentially confirm the histories that have already been taken. rumann and hamrick ( ) advised further research with student veterans and their educational challenges because trends in military recruitment and deployment practices, currently comprising large numbers of guard and reserve personnel, continue to evolve. ainslie ( ) recommended recruiting participants from various racial and ethnic backgrounds. and finally, several researchers suggested including family members as an integral part of the inquiry process (braun, ; graf et al., ; hagerty et al., ). references ainslie, d.l. 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( ). qualitative contributions to research. qualitative social work, ( ), - . chapter a qualitative study of military veterans’ resilience and body esteem following combat-related limb amputation abstract the purpose of this study was to learn about veteran experiences of sustaining a military combat-related amputation, with specific focus on how the veteran’s injury has affected his body esteem, and how body esteem and personal (resilient) characteristics are determining the veteran’s path of reintegration. additionally, veterans’ spouses were interviewed with the purpose of obtaining partner perspectives. this qualitative study used a purposeful sample of male military veterans and their spouses to develop an understanding of the veterans’ experiences of having sustained a military combat-related traumatic amputation, as well as an understanding of the spouses’ perspectives on their husbands’ experiences. the metatheory of resilience and resiliency is utilized as a conceptual framework for understanding resilient qualities, the force that drives an individual to grow through adversity and disruptions, and the process of reintegration. six operation iraqi freedom (oif) and operation enduring freedom (oef) veterans shared their personal adjustment experiences to limb loss. five spouses also shared their viewpoints of their husbands’ adjustments to the limb loss. one spouse was not able to participate. findings suggest that body esteem was generally positive among these veterans, although the spouses shared slightly different viewpoints. most of the veteran participants characterized their outcomes as resilient reintegration and the spouses corroborated the veteran outcomes. resilient drives that appear to have promoted reintegration include finding perspective and purpose (universal resilience), living consistent with one’s values and character strengths (character resilience), and accessing positive social support (ecological resilience). introduction the vietnam war led to the deaths of multitudes of wounded service members, namely due to the inability to reach mobile surgical hospitals (arredondo, foote, pruden, mcfarland, & mcfarland, ). improvements in protective gear and rapid medical evacuation to medical and surgery units have dramatically increased survival rates of service members wounded during the operation iraqi freedom (oif) and operation enduring freedom (oef). however, even though the core body is well protected, arms and legs remain vulnerable to injury. rapid evacuation to military medical centers in the united states results in the medical care system seeing more severely wounded service members with major limb loss surviving and requiring extensive rehabilitation (arredondo et al., ). although the recovery process may be life long, the advantages of being a military veteran include access to multiple support systems and innovative medical care for combat injuries. in addition to innovative medical care, the military is supporting preventative efforts that target the fitness of the forces, predeployment, mid-deployment and postdeployment, through the enhancement of psychological resilience (defined as the capacity to adapt successfully in the presence of risk and adversity) (land ; mullen, ). resilience is most easily conceptualized as having four prerequisites: ( ) risk or predisposition to biopsychosocial or environmental conditions, ( ) exposure to a high- magnitude stressor, ( ) stress response, and ( ) return to baseline or higher functioning and symptom levels (ballenger-browning & johnson, ). resilience has long been a topic of research interest. however, little published research exists on body esteem and resilience with regard to veterans’ processes of reintegration following combat-related traumatic limb amputation. this qualitative study used a purposeful sample of male military veterans and their spouses to develop an understanding of the experiences of having sustained a military combat-related traumatic limb amputation. the metatheory of resilience and resiliency is utilized as a conceptual framework for understanding resilient qualities, the force that drives an individual to grow through adversity and disruptions, and the process of reintegration. six operation iraqi freedom (oif) and operation enduring freedom (oef) veterans shared their personal adjustment experiences to limb loss. five of the veterans’ wives also shared their viewpoints of their husbands’ adjustments to the limb loss. overview of the literature body esteem and amputation within the context of this overview, body image and body esteem are interchangeably used and are defined as a person’s perception, positive or negative, of body size, shape, and appearance (reel & beals, ). in western cultures, body image seems to be based on youth and physical attractiveness. this emphasis can overshadow other personal attributes (taub, blinde, & greer, ). the importance given to the physical body may have a negative impact on people with an amputation, especially on body perception (sousa, corredeira, & pereira, ). perception of everyday reality depends on one’s point of view of the world and the body’s way of being-in-the-world. the actions of the body construct a world of social relations (sousa et al., ). in this way, the body can only be seen as deficient by comparison, assuming that others’ views are considered important (crossley, ). a person with an acquired amputation experiences a fundamental being-in-the-world change that creates a need to relearn and reformulate ways of living life. the loss of a limb is perceived as a loss of part of the self, and as a loss of the “lived-body” (goodwin, thurmeier, & gustafson, ). after an amputation, one is faced with loss of functionality, and often times, loss of ability to continue working, which then can have a profound effect on self-concept (horgan & maclauchlan, ). social discomfort and body image anxiety tend to be associated with a poor adjustment in terms of greater activity restriction, depression, and generalized anxiety (horgan & maclauchlan, ). body image experiences of individuals with an acquired amputation present distinct degrees of adjustment to a new reality. social barriers that people with amputations have to face on a daily basis become apparent in prejudiced and discriminatory conceptions that have been embedded in a society that struggles to accept body differences. as such, resilience is an important aspect to explore in relation to the body esteem of those who have visible physical differences. body esteem and resilience individuals with visible physical differences tend to struggle with their body esteem namely because the myth of bodily perfection is prevalent throughout western society. body image is embedded within historical, cultural, and social settings, and it is responsive to everyday experience (sousa et al., ). the body is also viewed as a means for being productive. people with disabilities have emphasized how important it is for them to work, not only to provide stable income, but also as a means of maintaining self-respect and giving meaning to life (schoppen, boonstra, groothoff, devrie, goeken, & eistma, ). social discomfort and body image anxiety tend to be associated with poor adjustment in terms of greater activity restriction, depression, and generalized anxiety (horgan & maclachlan, ). there is evidence that sociocultural norms for the ideal body influence individuals to base their self-worth more strongly on appearance (strahan, ). those with visible disabilities have reported that they often experienced rejection in social settings (stone, ). when there is a sudden traumatic change to body image, typically it creates anxiety and is perceived as a distortion of self (aamot, ). even if plastic surgery or prosthetic placement creates a socially acceptable body, individuals may have difficulty adjusting their mental image with the new image (aamot, ). a growing amount of more recent literature concerning body esteem can be found in research concerning eating disorders and their associated body image symptoms (stice & hoffman, ; reel & beals, ). in related studies, resilient qualities have been found to be protective factors against body dissatisfaction (cook-cotone & phelps, ). choate ( ) proposed a body image resilience model where five specific protective factors were identified that serve as the foundation for the resilience model. the protective factors include ( ) family-of-origin support, ( ) gender role satisfaction, ( ) positive physical self-concept, ( ) effective coping strategies, and ( ) sense of holistic balance and wellness. moreover, the metatheory of resilience and resiliency suggests that, among several resilient drives, the drive for noble resilience includes an innate desire to sustain a sense of self-worth, which encompasses physical self-esteem (body esteem) and purpose in life. thus, body esteem has been theorized to be an integral component of an individual’s ability to bounce back following trauma or adversity (richardson, ). the nature of one’s sense of the physical self and how this is connected to one’s self-worth and purpose in life remains to be of great interest to researchers when exploring resilient factors in combat wounded military personnel. resilience psychological resilience is important for the military community with regard to keeping military members and leaders fit for duty and protecting the health and wellbeing of military families (meredith, ). the resilience concept has been the cornerstone of the defense centers of excellence for psychological health and traumatic brain injury (dcoe) resilience program, which was created in as an effort to shift the culture within the military away from an illness-focused medical model of care to a model that focuses on psychological health (meredith, ). resilience research efforts have exponentially increased in the military as a result of the military activities and related consequences during operation enduring freedom (oef) and operation iraqi freedom (oif), specifically with regard to the factors that contribute to resilience (bonanno, ; burnell, ; butler et al., ; dolan & adler, ; gillham et al., ; haglund et al., ; king et al., ; maguire & hagan, ; meredith et al., ; norris & stevens, ; tugade & fredrickson, ; van breda, a; van breda, b) and the resilience programs that are operating within the military infrastructure (adler et al., ; bowles & bates, ; decker, ; deuster et al., ; jarrett, ; ritchie et al., ; sammons & batten, ; sharpley et al., ; waynick et al., ; williams et al., ; warrior mind training, ). it is noteworthy to mention that in the literature, resilience is sometimes mistakenly used interchangeably with the concept of posttraumatic growth (ptg), and is often times confused with ptg (tedeschi, calhoun, & cann, ). resilience, in general, has long been a concept of research interest. numerous resilience-based theories and research projects have been explored and implemented throughout the past several decades (emmons & crumpler, ; greene et al., ; mccullough, ; richardson, ; rutter, ; ryan & deci, ; seligman, ; ungar, ; werner, ). the concept of resilience continues to evolve through current research efforts that provide new insights to this phenomenon and its related factors. additional qualitative inquiry may support a deeper understanding of the nature of resilient qualities in relation to the development and maintenance of wellbeing in military personnel and veterans. resilience and amputation resilience and how it relates to body esteem and self-concept is important to consider for individuals who have sustained a military combat-related amputation because these individuals are faced with several life-altering adjustment issues when returning from deployment with a disabling injury. there appears to be a dearth of research pertaining specifically to resilience and amputation. most studies are quantitative in nature, and report findings in the areas of psychosocial adjustment and posttraumatic growth with regards to amputation (benetato, ; horgan & maclachlan, ). other studies focus more on adaptation to prosthetic limb use (murray, ). more research needs to be conducted in this area. also, since no studies have been published on body esteem, within the context of resilience, and reintegration of military veterans following combat-related amputation, this methodological gap presents a need for qualitative research that can serve to strengthen existing resilience programs and recovery efforts for military personnel and veterans. methods the purpose of this study was to learn about individual experiences of sustaining a military combat-related amputation, with specific focus on how the individual’s injury has affected body esteem, and how body esteem and personal (resilient) characteristics are determining the individual’s path of reintegration. this qualitative study used a purposeful sample of military veterans and their spouses to develop an in-depth understanding of their reintegration process following amputation. a total of male veterans and their spouses were invited to participate in the study, with veterans and spouses ultimately being interviewed. interviews were conducted that produced substantial narratives for each of the men and of the spouses. the main features of the interviews were ( ) the veterans’ experiences of sustaining a combat-related amputation, and the spouses’ perceptions of their husbands’ experiences; ( ) how, if at all, the amputation affected the veterans’ body esteem and how the spouses felt the amputation affected their husbands’ body esteem; ( ) how the veterans and their spouses describe the role of personal resilience in their paths of reintegration; and ( ) the meanings that were attached to their experiences. the interviews were carried out by me and followed questions set out in semistructured guides. the spouses were asked a slightly modified interview focusing more on relational factors as well as perceptions of their partner who experienced the traumatic amputation. each participant (veteran and spouse) was considered a co-researcher so that the research process was a shared journey between the participants and the researcher (jones, torres, & arminio, ). the co- researchers (participants) not only shared their life experience, but also assisted in the research process by reviewing the researcher’s summary of their experience and the summary of the research results. this process is termed “member checking” or “triangulation” of the data and is the process whereby the data are validated (mousakas, ). data from the interviews were generated using the long-interview method (lim), a heuristic method developed by mccracken ( ), which found that saturation on specific topics can be reached after - interviews. after analyzing the veteran transcripts and spouse transcripts of this study, no new information seemed to come forward, thus saturation appeared to be attained, on the questions that were being implemented. for this reason, no additional sampling was pursued. it was unfortunate, however, that despite multiple attempts by me, the th spouse was unable to be contacted for interviewing. descriptive and interpretive analyses were conducted (ray, ; van manen, ). the descriptive approach is based on husserl’s original theory and uses bracketing to set aside what the researcher already knows about the life experience under investigation and strives to approach data gathering without preconceptions (finlay, ). the interpretive approach is a modification of husserl’s theory that theorizes that it is impossible to eliminate preconceptions and create a blank slate approach. thus, interpretive researchers use their own life experience to interpret others and to guide the research questions (ball, ). ultimately, the experiences were coded and described within the conceptual framework of the metatheory of resilience and resiliency. the conceptual framework offered a way to examine the participants’ experiences in general and then dissect in them what was supplied by the minds of the participants from what was supplied by the given intuitions of the researcher (mousakas, ). reliability was addressed through credibility, transferability, and dependability. the trustworthiness of qualitative research is often questioned because the concepts of validity and reliability cannot be addressed in the same way as in quantitative methods (shenton, ). one key criterion, internal validity, is addressed in qualitative research via credibility, which addresses the question, “how congruent are the findings with reality?” (merriam, ). credibility was established in this study by ( ) utilizing well- established qualitative research methods, ( ) enhancing familiarity with the culture of the participants, ( ) member checks, ( ) thick description of the experiences under scrutiny, and ( ) examination of previous research findings (lincoln, ). transferability in qualitative research is a form of external validity in that it is concerned with the extent to which the findings of one study can be applied to other situations (merriam, ). ultimately, the results of a qualitative study must be understood within the context of the particular characteristics of the participants. the accumulation of findings from other studies in different settings may enable a more inclusive, overall picture to be gained. even when different investigations offer results that are not entirely consistent with one another, this does not imply that one or more is untrustworthy. it may be that they reflect multiple realities (shenton, ). dependability was addressed through techniques to show that, if the research were repeated, in the same context, with the same methods and the same participants, similar results would be obtained (shenton, ). in this study, such techniques included ( ) the research design was reported in detail so that it can be replicated, ( ) the operational detail of data gathering was reported, and ( ) reflective appraisal of the project was undertaken by the researchers (shenton, ). dependability was also supported by audio-taping and transcribing verbatim the interviews. in order to manage bias while conducting this study, a separate researcher who has familiarity with military and deployment experiences read each of the manuscripts in its entirety. key themes were discussed prior to making formal conclusions. and finally, the study’s materials and procedures were approved by the university of utah’s institutional review board. the analytic method used on this qualitative data involved a step-wise process. the texts from interview transcripts were numbered by talk turns from the interview for easier location of key themes and statements from the participants (veterans and spouses). the verbatim transcripts were then read through and annotated with memos about key concepts. no specific coding scheme was used at this first phase. in light of the theory and conceptual focus of this study, the transcripts were then reviewed a second time and the annotations were used as markers of particularly relevant statements. codes derived from the metatheory of resilience and resiliency were then used during this second pass to classify important resilient drives that have been proposed as key factors that move an individual toward resilient reintegration (richardson, ). these broad categories included the following: ) childlike resilience (the drive for pleasure and play), ) noble resilience (the drive to feel important and valued), ) character resilience (the drive to be moral and the yearning to live within a chosen moral framework), ) ecological resilience (the drive and yearning to be in enriching environments and to connect with the energy from one’s surroundings), ) universal resilience (the drive to connect to strength beyond oneself), ) intellectual resilience is the yearning to know and understand through prompts that come from the body and spirit, ) essential resilience (the physical body’s drive to sleep, to eat, and to move). to aid with the reliability of coding of resilient statements into these categories, a classification algorithm was created. specifically, this algorithm prompted the coder to assess whether the primary concept involved: ) behavioral actions, ) values, ) learning, or ) relating to others. if the primary concept involved behavioral actions, the coder was then prompted to assess whether the action involved enjoyment (childlike resilience: fun, joke, laugh, play) or life tasks (essential resilience: do, move, walk, work). when the primary concept involved values, the task was then to determine if the values were inwardly focused (character resilience: passion, personal mission, spiritual values, values) or if they were outwardly focused (universal resilience: acceptance, perspective, purpose, spiritual views). in instances where the primary concept involved relating, further clarification was required to determine if relating involved being needed (noble resilience: appreciated, important, needed, valued) or needing others (ecological resilience: connection, encouragement, help, support). the code for learning automatically was classified as intellectual resilience. body esteem themes were openly coded without any particular guiding framework. results the collaborative portion of the interview allowed participants to pinpoint their current level of resilience on a graphical figure depicting the metatheory of resilience and resiliency. five of the veteran participants identified resilient-reintegration as their perceived level of resilience (see appendix f figure ). the th veteran participant indicated that his level of resilience might actually be somewhere below resilient reintegration and somewhere above reintegration back to homeostasis. in context of the themes that emerged from each transcript, these characterizations seemed generally quite consistent with one exception, however. this exception included one veteran participant whose transcript highlighted many themes that were more indicative of reintegration with loss (e.g., “i know that life is worth living and there is still that out there, but it's hard to come back to that.” [transcript b, talk-turn ]). in this instance, therefore, the interviewer and coder determined that it may be more accurate to characterize this individual’s reintegration outcome as reintegration with loss but that his resilience appears to be actively in the process of improving. the spouses of each of the veteran participants were also asked to discuss their perception of their partner’s resilient outcomes. of the who were interviewed, spouses indicated that their veteran spouse was in the resilient reintegration outcome after the amputation. the remaining spouses described areas of growth after the amputation and recovery but were fairly clear that their veteran partner was “between three and four,” referring to reintegration back to homeostasis. body esteem was another key element to this study. examination of the verbiage during this interview revealed that there was not a great deal of variance in the responses from the veteran participants. specifically, the veteran participants all regarded their body esteem to be generally intact and positive in spite of the amputation. the spouses, however, had different perspectives about their husbands’ body esteem. in essence, the spouses each shared additional viewpoints that suggested body esteem may be more of a factor that affected wellbeing than the veterans themselves disclosed. emergent themes: drives for resilience there were several emergent themes related to drives for resilience that were detected after the memoing and coding processes were complete for the veteran transcripts. on the basis of the frequency of primary codes, each resilient drive together with representative statements from the veteran transcripts are described below. universal resilience the most frequently coded theme related to resilient drives is universal resilience—the drive to connect to strength beyond oneself. as indicated earlier, the algorithm used for coding this concept as a primary theme included whether or not the content included values and whether the values were outwardly focused (perspectives, views) versus inwardly focused (character resilience, including values, traits). this was the single largest category of codes applied from the resilient drives coding scheme ( . %). one theme was that of seeking out purpose and meaning from the injury: …there's a reason why you're here. there's a reason why you lived through it. and it might not come clear yet but it will reveal itself down the road. but for you, it's just overcoming what you need to overcome right now. (transcript d, talk-turn ) another theme within the universal resilience codes included keeping perspective through comparisons. such resilience is captured by the following quotations: that is just kind of who i am. because no matter where you look, i mean, and not necessarily physically or whatever, you can always find somebody who has got it worse than you. (transcript q, talk-turn ) …there’s people that go through a lot harder time than losing just one limb. (transcript j, talk-turn ) differential focus, which is a form of perspective taking, also emerged as an expression of universal resilience: i just think being occupied is one of the reasons i work now and i go to school. i try to keep myself as busy as possible, because as long as i'm doing something constructive and i'm moving forward, i do not think about what i lost. (transcript co, talk-turn ) character-resilience the next most frequent primary code from the resilient drives categories was character-resilience ( . %). character resilience is the drive to be moral and to live within a chosen moral framework and the following anchor terms were used to detect concepts related to this theme: passion, personal mission, spiritual values, and values. character strengths such as optimism and hope were referred to in this data, as typified by the following quote: so i have always been a positive, i guess, person. i am not sure what stereotype or what it is called but i have just been positive always. and having hope i guess that things can get better and will get better. (transcript ca, talk-turn ) acting in accordance with one’s values also illustrated character resilience. for instance: i’m not going to waste time by not going to school just because somebody is going to see me. the pro of going to school and progressing with my life far outweighed the con of having people look at me (transcript j, talk-turn ). and then so i tried working for another job. i did that and then it kind of got me out of my funk after retiring. and the first job doing it kind of brought out the, i guess the hunger or the passion to do something that i want to do. (transcript ca, talk-turn ) ecological resilience in order of frequency, ecological resilience emerged as the next most frequent category of primary codes ( . %). ecological resilience is the drive and yearning to be in enriching environments and to connect with the energy from one’s surroundings. both ecological resilience and noble resilience tapped the overarching theme or relating to others. the coding algorithm directed ratings to ecological resilience when the relating comment referred to needing others, whereas noble resilience was coded when the relating theme referred to being needed by others. salient statements include those provided below. these comments underscore drive of these participants to seek out social environments conducive to resilience: …it really came down to my support chain as far as my life, my parents, being there, supporting me along. and that it really helped me out. but also, it was just like someone else to talk to …but they're there to also build up your morale as far as, you know, ‘well, why do not we start doing this?’ or, ‘why do not we start doing that?’ like my wife, being as i've been getting into mountain biking a lot more, we've gone out, got pretty much everybody in the family a bike. so we'll go on family bike rides now and that. but i mean, it really comes down to probably just having that person to talk to and being like, ‘hey, you know, i'm having problems with this.’ (transcript d, talk-turn ) so then at that time they were like hey, we can try to continue saving it [the limb] or we can [amputate]. cause i guess i lost a lot of weight and i was pretty sick myself, i guess. so then they tried to - what did they say? we can try to save it or we can amputate it. i said okay. and then at that time i already saw one of the - wounded warrior project had one of those guys, representatives, there. and then he was an arm amputee also and i had already seen them come in and he showed me some toys and stuff and some of the arms he had. so at that time i was like well, can you do pushups or can you like still do stuff with prosthetics and like. and he said he could and he just dropped down and did a couple there. and then so i was like okay. (transcript c, talk-turn ) essential resilience essential resilience came next in line in order of frequency as a primary code ( . %). essential resilience refers to the physical body’s drive to sleep, to eat, and to move. example comments are provided below and each underscores the drive to be able to do and accomplish physical tasks. oh, like i was saying at the hospital, i remember my wife - i do not even know where this list is - but i was sitting there in the bed and i was just like, ‘i'm never going to be able to go rollerblading again. i'm never going to be able to play soccer with the boys. i'm never…’ i listed off a whole bunch of things that i said i was never going to be able to do. but at that point, i was still in that depressed mode. but once they got the staples out of my amputated leg and that and they started fitting me for a socket and i was able to start standing on my leg and start walking on the parallel bars, i think at that point, it started boosting my confidence. (transcript d, talk-turn ) …you know if a crisis or a situation ever came up i do not want to be that guy or that person that is not able to help somebody out because i’m out of shape. if i’m driving along the road and someone needs to be pulled out of a car, it’s just the way i think you know? i do not want to be that person that i cannot move or i’m not strong enough or i’m not physically fit enough you know; i do not want to be that person. (transcript j, talk-turn ) noble resilience noble resilience was the next category that emerged out of the primary codes ( . %). this form of resilience is the drive to feel important and valued. representative statements are included below: yeah. i think a little easier to just kind of suck it up because you have somebody relying on you and to kind of - you have to pick yourself back up and do something. (transcript ca, talk-turn ) to be put in the same position, and to understand. that is ultimately why i chose. i wanted to do something in healthcare. because i wanted to. i have been – i was two months as an inpatient in a hospital. i know how that is. i want to like almost give back. i understand somebody in a hospital's position because i have been there. (transcript q, talk-turn ) childlike resilience childlike resilience was only coded a few times ( . %) and intellectual resilience was not detected in the transcripts and was not used as a code with this qualitative data set. the transcripts of the spouses who were available to be interviewed were also coded for resilient drive themes. these are described below in descending order from the most frequent to the least frequent. universal resilience themes related to deriving strength from outside oneself, including perspective and acceptance were coded as universal resilience. as with the veteran participants, universal resilience was the most frequent theme among the spouse participants ( . %). a representative statement is below: he finally admitted to me the other day that he is connected so much that the way he is now and how much he accepted it he almost cannot even remember back when he did have both legs. i think he has known that it changed him and he's learned to accept and realizes that you know what? there are things that i can do. (transcript d-s, talkturn ) the next two themes both focus on the overarching theme of relating: ecological resilience and noble resilience. each of these themes occurred in equal frequency and comprised the second most frequent theme related to resiliency drives. ecological resilience themes relating to receiving help from others emerged frequently in the spouse interviews ( . %). this is salient in that the spouses often play a critical part of the ecology and social support for the veteran participants. indeed, spouses very often referred to their own efforts to provide support. a representative comment is below: i think it is important to have someone to support you and especially when they have been through something like that, very traumatic experiences. and to have that support, and somebody that understands, or somebody that you can talk to when you really cannot go and just talk to your friends about that stuff. (transcript co-s, talkturn ) noble resilience resilience that is derived from being of value to others emerged as a tie in frequency with ecological resilience ( . %). this theme captures resilience that comes from a focus on being of value and importance to others. a representative statement is below: i mean, he is just doing everything he can because we have kids. he wants to be an example to them. even though life is hard. no one wants to get their leg amputated, but he wants to be an example to our kids and show them that you're able to do [anything] in life, which is what he's doing now. and be able to have a family of their own. (transcript q-s, talkturn ) the resilience drives cited above account for about % of the all themes coded in the partner interviews. the remaining themes in descending order of frequency are as follows: character resilience ( . %), essential resilience ( . %), and childlike resilience ( . %). discussion this qualitative study examined military veterans’ resilience and body esteem following combat-related limb amputation. resilience and body esteem have not been studied adequately in the research literature among military veterans. the results of this study suggest that resilience and body esteem are generally positive and somewhat consistent among all veteran participants. that these topics emerged as generally homogenous was somewhat unexpected. in other words, the experience of an amputation was anticipated to produce a wider array of integration outcomes. instead, of the veteran participants self-identified resilient reintegration as the most characteristic outcome following their amputations. this positive result is significant and may likely be due, in part, to the fact that all of the veteran participants have now had several years since their amputations. and although all of the veterans sustained tbi to some extent, this did not appear to impact the interview process, most likely due to the amount of time that had passed since injury. several years have passed (between years and years) since each of the veterans had been injured. another somewhat unexpected theme was the homogeneity seen in body esteem. all veteran participants reported current high levels of body esteem and none seemed to be particularly distressed at the time of their interviews about their amputations. this was also an unexpected finding and one that may be explained by the resilient drive themes from the interviews. the spouses however, shared some different viewpoints about their veteran husbands’ body esteem and self-confidence. spouse ca-s (transcript ca-s) indicated that her husband (left arm amputee) becomes frustrated with fine motor skills and really struggled with switching from being left-handed to right-handed. she explained that he gets discouraged when he cannot do what other men can do, and that he is bothered when people stare at him. she also indicated that despite the amputation, the couple’s intimate (sexual) relationship has not changed at all, other than a few minor position adjustments. spouse b-s (transcript b-s) reported that her veteran husband’s physical body is linked to his self-worth and self-confidence, he was much more confident before his amputation, but he does not openly admit it to anyone. she also indicated with a strong yes that the couple’s intimate (sexual) relationship is negatively impacted by her husband’s body esteem related to the amputation. she explained that the couple met postinjury, and when they were first becoming intimate, he tried to hide his amputation. she also said that before they met several women had broken up with him when they found out about the amputation. she described how hurtful this was for him, and as a result, how timid he was with her. spouse co-s (transcript co-s) who also met her veteran husband postamputation said that she always questioned whether the amputation would affect their intimate sexual relationship in some way, but it never has. she explained that she met and married her husband knowing the circumstances, and so she knew what to expect. she said that she believes that his amputation has not affected his body esteem, his self-worth, or their intimacy in a negative way. spouse d-s (transcript d-s) explained how her veteran husband has spoken about not feeling like he was a whole man anymore, and that she kept telling him that he was, that his physical leg was not what made him whole, and that he was still the man she married and is still in love with. she described how defeated her husband initially felt, and that the slow progress he began to make helped him to build his physical self- confidence. she described that his ptsd affected their intimate relationship more than the change to his physical body, but she did describe that the couple had to make adjustments to accommodate intimate positions. she stated that she believes that his physical body and capabilities are strongly linked to his self-confidence and self-worth, although he has learned to adapt, accept his situation, and focus on what he can do rather than what he cannot do. she indicated that the couple’s children play a very large part in helping him to recognize his strengths and goodness as a father and role model for them. finally, spouse q-s (transcript q-s) described how the couple had been divorced prior to his deployment, then remarried postinjury while the veteran was still at the center for the intrepid in san antonio, tx. she said that the amputation did not negatively change their intimate relationship because they both believe that everything happens for a reason. she indicated that perhaps they never would have been remarried had he not gone to afghanistan and been injured. she says that his body esteem has not been negatively impacted per se, but there are definitely activities that he wishes he could still perform. the veteran, on the other hand, indicated previously that he had made a “bucket list” of activities he wanted to do again, and with the help of his family, he has met nearly every one of them. emerging themes related to resilient drives (richardson, ) were the basis of much of the qualitative data analysis and coding. three-quarters of all the primary codes had to do with the following resilient drives: universal resilience, character resilience, and ecological resilience. the salience of these themes paints a picture of the pathways to resilience as retold and experienced by these participants. to understand their experiences is to appreciate their drive to find meaning, purpose, and perspective on life after an amputation (universal resilience); to account for the importance of personal values and character strengths enlisted in the process of recovery (character resilience); and to comprehend the critical role of supportive others (ecological resilience) in the process of resilient reintegration after the combat trauma and amputation. given the dramatic changes to physical functioning after an amputation, it was surprising that essential resilience—the physical body’s drive to sleep, eat, and move— was not as prominent as the other themes. it would seem that part of the resilience process for these veteran participants was to put other priorities, areas of focus, and goals ahead of the amputation itself. this process not only seemed to allow the participants to enlist other powerful internal (character strengths) and external (perspectives, help from others) resources to cope with the amputation, but following this pattern may have also reduced the tendency for the amputation to take center stage in their life and coping. another contributing factor to the secondary regard for the amputation is that several of the veteran participants had the opportunity to choose amputation after their initial combat trauma that resulted in the severe injury to their limb. military rehabilitative medicine, as retold by these veteran participants, went to extensive efforts to preserve severely wounded limbs. several of the veteran participants noted, however, after making the difficult medical decision to amputate, they found relief from infection risk and physical pain as well as increased mobility with a prosthetic limb. both the engagement of veteran choice in the process together with positive outcomes may have resulted in enhanced coping and improved reintegration outcomes. it is interesting to note that resilience is occasionally used interchangeably with the term posttraumatic growth, and the two terms have actually been theoretically confused in the literature (tedeschi, calhoun, & cann, ). this begs the question, have the veterans in this study experienced some degree of resilience or have they experienced some measure posttraumatic growth? it has been debated as to whether or not posttraumatic growth is a form of resilience, and argued whether or not posttraumatic growth is superior to resilience (johnson et al., ; tedeschi et al., , wesphal & bonanno, ). some studies have suggested that, contrary to an intuitive sense that resilience and posttraumatic growth should be positively related in that they are both salutogenic outcomes, the terms are actually conversely related in the sense that posttraumatic growth indicates a change for the better following adversity while resilience indicates an increased ability to mitigate the impact of the event(s) (levine et al., ; tedeschi & calhoun, ; westphal & bonanno, ). furthermore, posttraumatic growth has been described as a need to find meaning to traumatic events, where resilient people are less likely to engage in the meaning-making behaviors that are associated with the growth because they are unlikely to struggle with the implications of the trauma (bonanno, wortman & nesse, ; tedeschi & calhoun, ). as such, it has been argued that resilient outcomes may provide little need or opportunity for posttraumatic growth (westphal & bonanno, ). it has been suggested that resilience is more common and expected than is often believed and that there are multiple and sometimes unexpected pathways to resilience (bonanno, ). from a broad and integrative perspective (bronfenbrenner, , ), this is due in large part to resilience arising from the processes of interaction across multiple levels of functioning (e.g., from genes to neural systems to relationships to individual-media interaction). posttraumatic growth, however, may only occur if trauma has been upsetting enough to drive the survivor to positive meaning-making of the negative events, which is not necessarily common occurrence (tedeschi & calhoun, ). ultimately, the relationship between resilience and posttraumatic growth remains unclear, thus leaving the question unanswered as to whether the veterans in this study have developed or maintained some degree of resilience, or experienced some form of posttraumatic growth. limitations most veteran participants and their spouses in this study self-identified resilient reintegration as their most characteristic reintegration outcome. this result should be examined within the context of the research method by which the data were gathered. importantly, the collaborative nature of this research design allowed for the participants to self-report their resilient integration outcomes. demand characteristics, which are common with self-report, cannot be ruled out as a contributing factor. importantly, however, it is likely that demand characteristics were minimized by the extensive interviewing method, which was intended to build rapport and comfort with each participant. furthermore, there was evidence of candor throughout the stream of thought in all the interviews, suggesting that these participants were open and quite willing to speak about the positive and the negative of their experiences. conclusion while these qualitative research results cannot be assumed to be indicative of the reintegration of all or even other male military veterans who experience combat-related traumatic limb amputation, they do suggest that these veterans have increased resilience to traumatic limb loss, particularly when they seek to understand purpose and meaning from their injuries (universal resilience), and when they are able to maintain optimism and hope through the recovery and reintegration process (character resilience). each participant and his spouse took a different journey of recovery and reintegration, and all are building new lives. they are also determined to contribute to society (noble resilience). references aamot, s. 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( ). stars: strategies to assist navy recruits’ success. military medicine, ( ), - . chapter summary three articles were presented that discussed research related to resilience and body esteem in military veterans with combat-related traumatic amputations. article (chapter ), “the impact of disability on body esteem: a review of the literature,” examined the existing literature regarding body esteem in individuals with various disabilities. the purpose of the article was to highlight principal findings and identify areas that require further research. article (chapter ) is a companion article entitled, “qualitative research contributions to military postcombat transition and reintegration: a review of the literature.” the purpose of this review was to examine the existing qualitative literature regarding military postcombat transition and reintegration. four categories were identified, which included ( ) psychosocial adjustment and coping, ( ) physical disability adjustment, ( ) protective factors, and ( ) transition challenges. several themes were also distinguished within each category. article (chapter ), “a qualitative study of military veterans’ resilience and body esteem following combat-related limb amputation,” included semistructured interviews with former service members who had sustained a military combat-related limb amputation, and semistructured interviews with the veterans’ spouses. personal interviews were used to gain an in-depth understanding of the resilience and body esteem of each amputee, as well as the viewpoints of the spouses. in lieu of a grounded theory approach, which is common in qualitative research, the metatheory of resilience and resiliency was utilized to guide the analysis of the interviews with these male participants and spouses, with the understanding that the interviews were semistructured and open-ended in nature. open, axial, and selective coding were used to analyze the data. limitations qualitative research is a time intensive process that requires honed listening skills and significant attention to detail. when utilizing descriptive and interpretive analyses, along with a conceptual framework, these skills are even more important. many researchers suggest that it is important to reach saturation. saturation occurs when no new ideas or data are presented (charmaz, ; corbin & strauss, ; creswell, ). unfortunately, it is difficult to know when saturation has truly been reached. this is a possible limitation of the current study, although saturation seemed to be reached after veteran interviews and spouse interviews. however, more interviews would continue to add to the strength of the conceptual framework and confirm the individual components of the metatheory of resilience and resiliency. a second limitation involves the selected sample. the current study examined the process of reintegration among male military veterans who had sustained a combat- related traumatic amputation. all of the participants reside in utah and idaho (the region associated with the salt lake city va). consequently, the results may only be transferable to a similar population. further research needs to be conducted to determine how well the conceptual framework fits with the experiences of combat-wounded veterans and their spouses in other geographical areas. additionally, further research would be helpful in determining whether female veterans experience reintegration in a similar way or not. last, in order to establish trustworthiness of the data, it is important to conduct member checks and have experts review the data. while these steps were taken, the participants were brief in their responses and comments concerning the collected data. also, only one expert reviewed the interviews. these limited numbers suggest that data trustworthiness might be limited. application to health education the findings of the current study have significant implications for health education: ) there is a large amount of stigma associated with the mental health aspects of recovering from a traumatic injury. health educators have the responsibility to provide accurate information that explains the model of resiliency, specifically the process of going through the “trough.” or the low points of the life disruption, and how one can begin to resiliently reintegrate (richardson, ). a sample health education program is provided that demonstrates this unique process (appendix g). health educators also have the responsibility to promote a culture of understanding and compassion when educating individuals about recovery and reintegration after a traumatic event. ) health educators can be instrumental in helping to develop and transform resilience programs in the military. the military is currently supporting a difficult paradigm shift away from stigma and the “suck it up and drive on” attitude, to a preventative approach that supports emotional wellness and baseline resilience (see appendix h). ) last, health educators can help create a culture of resilience by teaching skills associated with resilient drives and protective factors (see appendix g). these constructs are essential in promoting positive physical, emotional, social, and spiritual health. personal reflections completing my doctorate degree has been one of the most difficult things that i have ever done in my life. i have been sad. i have been angry. i have been at my breaking point numerous times wishing i could quit, especially after having to start working full time at the beginning of year . however, i have always known that i could not quit and that i would not quit. in my heart, i knew that what i was doing was exactly what i was supposed to be doing. i am thankful for that knowledge and for my ability to persevere. despite all of the challenges i have faced, completing my doctorate degree was also one of the greatest experiences that i have had. i have met many amazing people, and gained a large amount of knowledge and skills. in the end, i learned more about myself than i could have ever imagined. i have learned that i am more resilient than i have given myself credit. completing my dissertation certainly had its challenges, but ultimately, it was a wonderful experience that has changed my life. i came to really care about the veterans and their spouses i interviewed and am very protective of their stories and experiences. their experiences have greatly impacted my current career path. i learned so much about struggle, heartache, and sorrow, as well as healing, love, and compassion. these veterans and their spouses taught me that having meaningful connections is central to health and happiness. hearing their stories solidified my ultimate goals of helping military service members, veterans, and their families reach their ultimate potential, and recognize and address issues that get in their way. this is the essence of my current position with the utah army national guard. i love this country and i am grateful for the opportunity to serve those who serve this country, in war and in peace. i am also grateful for the opportunity i had to interview these veterans, and for their willingness to share some of their most vulnerable moments with me. references richardson, g. ( ). the metatheory of resilience and resiliency. journal of clinical psychology, ( ), - . charmaz, k. ( ). constructing grounded theory: a practical guide through qualitative analysis. thousand oaks, ca: sage publications, inc. corbin, j., & strauss, a. ( ). basics of qualitative research: techniques and procedures for developing grounded theory ( rd ed.). thousand oaks, ca: sage publications, inc. creswell, j.w. ( ). qualitative inquiry and research design: choosing among five traditions. thousand oaks, ca: sage publications, inc. appendix a recruitment material invitation to join a research study a study of military service members’ resilience following traumatic amputation juliann jeppsen, cpt, u.s. army university of utah background you are being asked to take part in a research study. the purpose of the study is to learn about your experiences of sustaining a military combat-related amputation. study procedure it will take you approximately minutes to complete a personal interview. the interview may be audio recorded with your permission. after the interview, you may be asked to answer follow-up or clarifying questions, which will take approximately minutes on a different day. questions will be asked about your combat experience, how you feel about your physical appearance, how your life has changed since your injury, your recovery process, and your personal resilience. this is a semistructured interview, and you are encouraged to ask questions and share whatever information you wish to share. date and location of interview interviews will take place in late march or early april. the location will be somewhere that is comfortable for you. researcher contact information please call, email, or text me as soon as possible so i can set up a time to interview you. i can receive calls/texts at - - . you can email me at: juliann.m.jeppsen.mil@mail.mil or juliann.jeppsen@gmail.com. i will always respond within hours or less. compensation for your time i know your time is very valuable, so to show appreciation for your involvement, you will receive a $ cash card or gift card (active-duty participants must be in a leave/liberty status in order to receive this gift). appendix b consent form consent document a qualitative study of military veterans’ resilience and body esteem following traumatic amputation background you are being asked to take part in a research study. before you decide it is important for you to understand why the research is being done and what it will involve. please take time to read the following information carefully. ask us if there is anything that is not clear or if you would like more information. take time to decide whether you want to volunteer to take part in this study. the purpose of the study is to learn about individual lived experiences of sustaining a military combat-related amputation, with specific focus on how the injury has affected body esteem, and how body esteem and personal (resilient) characteristics are determining the path of reintegration. this qualitative study is using a purposeful sample of military veterans and their spouses to develop an in-depth understanding of the reintegration process following amputation. study procedure it will take you no longer than minutes to complete a personal interview. the interview may be audio and-or video taped with your permission. after the interview, you may be asked to answer follow-up or clarifying questions, which will take approximately minutes on a different day. questions will be asked about your combat experience, how you feel about your physical appearance, how your life has changed since your injury, your recovery process, and your personal resilience. this is a semi- structured interview, and you are encouraged to ask questions and share whatever information you wish to share. risks the risks of this study are minimal. you may feel upset thinking about or talking about personal information related to your injury. these risks are similar to those you experience when discussing personal information with others. if you feel upset from this experience, you can tell the researcher, and he/she will tell you about resources available to help. benefits there are no direct benefits for taking part in this study. however, we hope the information we get from this study may help develop a greater understanding of recovery from a traumatic amputation. we want to understand how personal resilience and feelings about physical appearance may or may not affect recovery and reintegration. confidentiality we will keep all research records that identify you private to the extent allowed by law. records about you will be kept on computers protected by passwords. written notes will be kept in locked file drawers. you do not need to supply your social security number in order to participate in this study. only those who work with this study or are performing their job duties for the university of utah will be allowed access to your information. your name will be kept with your responses from the interviews. in publications, your name will be removed. person to contact if you have questions, complaints or concerns about this study, you can contact juliann m. jeppsen at - - . if you feel you have been harmed as a result of participation, please call dr. glenn richardson, phd, university of utah, at - - , who may be reached monday through friday, during the hours of am and pm, mountain standard time. institutional review board: contact the institutional review board (irb) if you have questions regarding your rights as a research participant. also, contact the irb if you have questions, complaints or concerns which you do not feel you can discuss with the investigator. the university of utah irb may be reached by phone at ( ) - or by e-mail at irb@hsc.utah.edu. research participant advocate: you may also contact the research participant advocate (rpa) by phone at ( ) - or by email at participant.advocate@hsc.utah.edu. voluntary participation research studies include only people who choose to take part. you can tell us that you do not want to be in this study. you can start the study and then choose to stop the study later. this will not affect your relationship with the investigator. costs and compensation to participants we do not anticipate that you will incur any monetary costs related to research procedures. you may be compensated for participation in this study, up to $ in gift card format. this will be allotted to you at the time of your interview. consent by signing this consent form, i confirm i have read the information in this consent form and have had the opportunity to ask questions. i will be given a signed copy of this consent form. i voluntarily agree to take part in this study. ___________________________________ printed name of participant ___________________________________ ______________________ signature of participant date ___________________________________ printed name of person obtaining consent ___________________________________ ______________________ signature of person obtaining consent date appendix c demographics questionnaire demographics questionnaire ) age ________ ) marital status a. married b. divorced c. separated d. widowed e. single, never married f. unmarried, cohabitating g. committed relationship, not cohabitating h. other ) do you have children?______if so, how many?______ ) what is your annual gross family income?___________ ) ethnicity a. white b. black c. asian d. hispanic e. pacific islander f. american indian or alaskan native g. more than one race h. unknown/refused i. other ) which of these groups best describes you? a. catholic b. protestant c. latter-day saint d. islam e. judaism f. spiritual, but not religious g. other: ___________________________ ) which of these best describes your current level of education? a. some high school b. high school graduate c. trade/technical school d. some college e. college graduate f. some graduate school g. completed graduate school ) branch of military in which you served. a. army b. air force c. navy d. marine corps e. coast guard f. national guard ) what is your current status? a. active duty b. reserve c. veteran ) what is your current rank or rank at discharge?______ date of discharge______ ) how many years did you serve?______ appendix d veteran interview guide interview guide . describe your combat experience. . how was the actual experience of combat different or the same as what you have anticipated from your training and years of service? . describe your life before you were injured. what, if anything, motivated you? (what personal attributes/protective factors did you have that helped you? where did you learn to be that way?) . in what ways, if any, has being injured changed your life? . what is it like to be in your body, as it is now, versus how it was before you were injured? . in what ways, if at all, is your physical body linked to your self-worth (pre and postinjury)? . in what ways, if at all, would you describe what motivates you now? (what, if any, personal attributes/protective factors help or hinder you now? where do you think those attributes come from?) . please describe your recovery process in terms of the physical, emotional, social, and spiritual components, if such components apply to you. . if you were to visit someone in the hospital with your same injuries who was just beginning the recovery process, what would you tell him or her? . what were your expectations going in to your deployment? how did the military prepare you for deployment? (how would you describe your recovery and reintegration based on this resiliency model, if this fits for you? where would you place yourself on this model right now?) appendix e spouse interview guide interview guide . describe what your husband told you about his combat experience, specifically related to his injuries and his thoughts/feelings about his injuries. . from your point of view, please describe your husband’s recovery process in terms of the physical, emotional, social, and spiritual components, if such components apply to him (each dimension will be addressed separately). . from your point of view, describe his life before he was injured. what, if anything, motivated him? (what personal attributes/protective factors did he have that helped him? where do you think he learned to be that way?) . in what ways, if any, has being injured changed your husband’s life and changed your life as a couple? what are your observations about your husband’s adjustment to his changed body? as a couple, how have you adjusted to his changed body? . how, if at all, has his postinjury physical body changed your relationship as a couple? . in what ways, if at all, do you think his physical body is linked to his self-worth and his self-confidence (pre and postinjury)? are there things that he cannot do anymore (that he wishes he could do), or that you as a couple cannot do anymore (that you wish you could do) because of his injuries? . in what ways, if at all, would you describe what motivates your husband now to be resilient and not give up? (what, if any, personal attributes/protective factors help or hinder him now? where do you think his attributes come from? . if your husband was able to visit someone in the hospital with similar injuries who was just beginning the recovery process, what do you think he would tell him or her regarding the recovery process? what would you tell the spouse? . how would you describe your husband’s recovery and reintegration based on the resiliency model (the model will be shown and explained first), if this fits for him? where would you place him on this model right now, and where would you place you as a couple on this model? . what else do you have to add that might be helpful for me to know as it related to this topic? appendix f the metatheory of resilience and resiliency conceptual framework introduction this appendix outlines a conceptual framework that was utilized as a foundation for guiding a qualitative inquiry. the study addressed the impact of an individual’s body esteem and resilience on the process of reintegration following military combat-related limb amputation. body esteem is described as a view of the physical self in relation to feelings of self-worth and life purpose (taleporos, ). the term resilience has multiple definitions, including the force that motivates people to have fulfilling experiences (richardson, a), the ability to persist in the face of challenges and to bounce back from adversity (reivich, seligman, & mcbride, ), and a set of processes that enables good outcomes in spite of serious processes (masten, ). resilience resilience was first formally described in and has been increasingly studied in the medical and psychological research literature since that time (mcgeary, ). the resilience framework emerged within a broader transformation in theory and research on psychopathology that created developmental psychopathology (cicchetti, ; masten, , stroufe & rutter, ). a core tenet of developmental psychopathology is that investigations of positive and negative adaptation are mutually informative (stroufe, ). a resilience framework is consistent with this perspective in its assertion that the study of developmental processes under extraordinary conditions can inform understanding of both typical and atypical development, and the human capacity for positive adaptation and achievement in the face of adversity (linley & joseph, ). research in resilience has continued to probe into finding out more about resilient characteristics by inquiring about how resilient qualities are acquired. the metatheory of resilience and resiliency according to the metatheory of resilience and resiliency (richardson, ), resilience is an area that allows for the exploration of “interpersonal gifts and strengths that can be accessed to grow through adversity” (p. ). resiliency is further described as the process of embracing disruptions (stressors, adversity, and life events) in a way that results in the identification, fortification, and enrichment of resilient qualities (richardson, a; waite & richardson, ). as a metatheory, primary concepts and constructs are similar to other established theories and postulates. this section provides a detailed description of the metatheory as well as an examination of other theories and ideas from which the metatheory was derived. the metatheory describes three waves of resilience: ( ) acquisition of resilient qualities, ( ) the resiliency process, and ( ) innate resilience. this qualitative study specifically explores the resiliency process as a major construct, with acquisition of resilient qualities and innate resilience as supportive constructs. individual differences regarding reintegration are abundant, yet military service members may share common themes when it comes to certain characteristics that determine personal resilience and ability to reintegrate. in essence, everyone who survives a life disruption does reintegrate to some extent, though there are differences in types and outcomes of reintegration. first wave: acquisition of resilient qualities the first wave of resiliency inquiry emerged through phenomenological identification of characteristics of survivors, mostly young people living in high-risk situations. the metatheory suggests that the more resilient qualities one acquires, the more resilient one will be. several foundational studies have identified qualities that predict the capacity to thrive in the face of personal challenge (richardson, b). the situational premise of resilience is that people possess selective strengths to help them survive adversity, and these strengths have been referred to as protective factors or developmental assets (richardson, ). the work of werner and smith ( ) illustrates an example of resilient qualities serving as developmental assets. the researchers conducted a -year longitudinal study where they followed individuals on the island of kauai who had suffered perinatal stress at birth. these individuals grew up in poverty-stricken dysfunctional families, surrounded by substance abuse and mental illness, yet they still indicated at midlife a high sense of satisfaction and wellbeing. other studies have identified resilient characteristics in children. flach ( ) also described protective factors as interpersonal strengths that include self-esteem, personal discipline, and responsibility. werner ( ) identified several traits including having high self- esteem, being socially responsible, adaptable, achievement oriented, being an effective communicator, and being tolerant. benson ( ) discovered several external assets in children including receiving support, having a sense of empowerment, having healthy boundaries and expectations, and finding constructive uses of time. the field of positive psychology has also contributed to the concepts of the metatheory through the identification of additional resilient qualities. positive human traits are key constructs in positive psychology. an exclusive issue of the american psychologist includes articles that focus on the positive features that make life worth living, like hope, wisdom, creativity, future mindedness, courage, spirituality, responsibility, and perseverance (seligman & csikszentmihalyi, ). specific articles described optimal resilient qualities such as happiness (buss, ), subjective wellbeing (diener, ), optimism (peterson, ), faith (myers, ), excellence (lubinsky & benlow, ), wisdom, (baltes & staudinger, ), and creativity (simonton, ). self-determination has also long been identified as a core resilient characteristic (colditz, willett, stampfer et al., ). second wave: the resiliency process the second wave of resiliency inquiry was a pursuit to discover the process of attaining resilient qualities. the metatheory is based on this resiliency model (richardson, neiger, jensen, & kumpfer, ), which stipulates that reintegration can be described along a continuum that includes levels of dysfunctional reintegration, reintegration with loss, reintegration back to homeostasis, and resilient reintegration. the description of resiliency begins with any point in time when one has adapted to a life situation. the term “biopsychosocial homeostasis” is used to describe this adapted state of mind, body, and spirit (richardson, a). this homeostasis is regularly bombarded with life stressors, adversities, opportunities, and other forms of change, through which humans can develop resilient qualities so that future stressors will become less disruptive (see figure ). chronic stressors come about when people do not develop resilient qualities or have not grown through the disruptions in their life (richardson, a). life disruptions result in primary emotions like fear, guilt, hurt and loss that potentially lead to self-examination and contemplation. with the passing of time and adaptation, the reintegration process begins. figure is a linear representation of what occurs during the process of reintegration. in the “trough” where the disruption occurs and reintegration begins, people often learn much about themselves and what is important in life. it is in the disruptive troughs of life that people discover their driving forces that help them cope with life challenges. some people will try to return to the same conditions they had before the disruption (see figure , reintegration back to homeostasis), which may or may not actually be possible depending on the circumstances. not all life events lead to people growing through the disruptions. instead, people may cling to their comfort zones and turn down opportunities for growth to avoid more disruptions. others will become bitter, angry, and more distressed, and will reintegrate with loss or worse yet, widespread dysfunction (see figure , reintegration with loss, dysfunctional reintegration). the ideal outcome is for people to discover their inner strength, develop self-mastery skills, and resiliently reintegrate from the life disruption (see figure , resilient reintegration) (richardson, b). the resiliency process could take place is just a few seconds for minor life disruptions, and potentially up to several years for traumatic events. life progression is a function of repeated resilient reintegration that results from life disruptions, whereas life stagnation is a function of clinging to homeostasis and getting past experiences rather than growing from them. life digression is chronic reintegration with loss or chronic dysfunctional reintegration (richardson, b). third wave: innate resilience the resiliency process includes an examination of one’s innate resilient qualities and how one may acquire or further develop resilient qualities. resilience theory states that there is a force within everyone that drives them to seek self-actualization, altruism, wisdom, and harmony with a spiritual source of strength. everyone has common resilient forces and yearnings, and the energy produced by these forces can be used to progress through the resiliency process (richardson, b). resilience has also been defined as an ecological process, expressed and affected by multilevel attachments involving families, schools, and communities, and is a complex and mysterious interplay between person and environment (greene, galambos, & lee, ). two postulates have been derived from disciplines such as psychoneuroimmunology, philosophy, physics, theology, psychology, eastern medicine, and neuroscience. the first postulate suggests that a source for actuating resilience comes from one’s ecosystem (richardson, ). from a quantum physics viewpoint, einstein proposed his macro theory of relativity where he suggested that, at a subatomic level of life, matter and energy are equivalent, and comprise units that come from the sun, the oscillations from the earth, plant life, light, music, animals, humans, and other forms of both living and nonliving things. on a personal experiential level, the energy that figure . comes from being in a beautiful natural setting, from receiving a surprise visit from a loved one, or from finding an unexpected large amount of money can have powerful healing effects and can actually eliminate minor physical ailments. the more physicists learn, the more they tend to make reference to a driving force that controls the universe (richardson, ). from an eastern medicine perspective, taoism proposes that all things connect through chi, or life energy, and that when peace is created within oneself, a person can move in tandem with this energy that circulates and creates a flow that allows a peaceful coexistence with oneself and the environment (richardson, ). also, most people tend to believe that their inner strength comes from their belief in god or some other creative force. having such faith in spiritual forces strengthens the immune system of the body in addition to increasing self-efficacy and other resilient qualities (richardson, ). the second postulate indicates that resilience is a capacity in every soul. in resilience theory, soul refers to the whole integrated being of an individual with one’s human spirit as the primary guiding force of the system. actions or behaviors result as a synergistic experience of the entire soul—body, mind, and human spirit. this premise is supported by research studies that have shown that people who are optimistic, hopeful, engaged in a cause, and lacking the time to be sick have stronger immune systems because when thoughts and feelings occur, energy is transmitted throughout the entire body, mind, and spirit (richardson, a). other theories support the idea of innate resilience. both self-determination theory and self-efficacy theory suggest that people have within themselves a force that will drive them to pursue healthy living. self-determination theory posits that human beings are driven by inherent growth tendencies and innate psychological needs, and that intrinsic motivation (the inherent tendency to seek out novelty and challenges, to extend and exercise one’s capacities, to explore, and to learn) and extrinsic motivation (the performance of an activity in order to attain some separable outcome) drive the choices that individuals make without any external influence or interference (deci & ryan, ). self-efficacy theory suggests that the beliefs a person holds regarding his or her power to affect situations strongly influence both the power a person actually has to face challenges and the choices a person is most likely to make. these effects are particularly apparent and compelling with regard to behaviors affecting health (bandura, ). several interrelated motivational forces and innate resilient drives give meaning to the resiliency process (richardson, a). childlike resilience is the drive for pleasure and play. it is an innate energy that many people seem to have buried, a deep childlike nature that produces a drive or yearning to have fun, to be creative, to be spontaneous, to laugh, to take risks, to be genuine, to be curious, to be open, and to have pleasure. childlike resilience is strength to feel a sense of adventure, to take risks, to experience playfulness and humor, and it is applying such strength to life’s challenges. noble resilience is the drive to feel important and valued. self-esteem, self- efficacy, and self-worth all reflect noble resilience. feeling noble is protective against unhealthy habits and self-destructive behaviors. purpose and meaning in life are discovered through altruism and strength-based service. where noble resilience is the desire to acquire feelings of self-worth, it is the noble drive for altruism and service that must be acted upon in order to feel important. the means to feel good is initially accomplished through personal goals, but with maturation, feeling noble comes as a result of altruism. character resilience is the drive to be moral and the yearning to live within a chosen moral framework. living within one’s chosen character structure produces guilt- free energy and promotes personal power and influence. guilt is an energy drain and compromises the healing process. most people resonate to concepts such as integrity, honesty, trustworthiness, kindness, loyalty, and honor. these qualities transcend across cultures and genders, and carry across the life span. ecological resilience is the drive and yearning to be in enriching environments and to connect with the energy from one’s surroundings. candace pert ( ), an internationally recognized neuroscientist, described how vibrations that come from nature activate neuropeptides in the body. neuropeptides connect with cell receptors and send messages through vibrations. animals, plants, music, and other sources of soothing vibrations help people to thrive through adversity. these vibrations can create optimal psychospiritual states when one is receptive and open. universal resilience is the drive to connect to strength beyond oneself. the sources for accessing such strength come from the ecosystem, the collective unconscious, or some other form of deity. every person can learn to discover strength of wisdom beyond normal conscious thinking. faith facilitates healing, and even agnostic individuals can be educated regarding the vast wisdom of the collective unconscious mind that reflects a universal wisdom. intellectual resilience is the yearning to know and understand through prompts that come from the body and spirit. the mind listens to the yearnings of the human spirit as well as prompts for physical needs that emanate from the physical body. the mind can learn to be sensitive to physical and resilient yearnings and prompts, decide how to fulfill the needs, create situations where the needs can be fulfilled, and form new identities that fulfill those needs (richardson, a). essential resilience refers more specifically to the physical body’s drive to sleep, to eat, and to move. this is the yearning to optimize physical function and to be physically healthy. essential resilience includes innate prompts to the physical body such as ( ) when to sleep, ( ) what, when and how much to eat, and ( ) when and how to physically move, all to promote optimal physical health. the human body is a product of resilient drives and how the mind has chosen to act upon them. the concept of resilient drives can also be seen elsewhere. maslow ( ) described a hierarchy of needs where the base of the hierarchy includes the physiological needs such as food, sleep, stimulation, and activity. the next level includes safety needs that involve being secure and protected from harm. higher still are the needs for love and belongingness. even higher are the esteem needs such as self-respect, personal worth, and autonomy. at the top of the hierarchy is the need to reach full potential or self-actualization. maslow proposed that the needs self-arrange according to necessity. once the physiological needs are satisfied, other needs will emerge. these are needs and desires that are higher in the hierarchy, and once these needs are satisfied, still higher needs and desires will surface. furthermore, resilient drives are similar to the inner resources that are described in self-determination theory (ryan & deci, ). all humans possess inner resources that can be used for personality development and behavioral regulation. the theory defines a basic need, whether physiological or psychological, as “an energizing state that, if satisfied, conduces toward health and wellbeing but, if not satisfied, contributes to pathology and ill-being” (p. ). finally, in order for one to experience integrity and wellbeing, three basic needs of competence, autonomy, and relatedness must be satisfied across the life span. resilient drives also relate to various concepts from the perspective of positive psychology (seligman & csikszentmihalyi, ). positive psychologists focus on character strengths that contribute to life fulfillment, strengths “of the heart”—zest, gratitude, hope, and love—and other cerebral strengths such as curiosity and love of learning (park, peterson, & seligman, ). positive psychologists have defined virtues and character strengths that seem to align with resilient drives and yearnings. transcendence, for example, one of the six virtues, is defined as a set of strengths that forge connections to the larger universe and provide meaning (seligman, steen, park, & peterson, ). this virtue directly correlates with the drive to connect to strength beyond oneself, or universal resilience. the field of positive psychology at the subjective level is about valued subjective experiences: wellbeing, contentment, and satisfaction in the past; hope and optimism for the future; and flow and happiness in the present. at the individual level, it is about positive individual traits: the capacity for love and vocation, courage, interpersonal skill, aesthetic sensibility, perseverance, forgiveness, originality, future mindedness, spirituality, high talent, and wisdom. at the group level, it is about the civic virtues and institutions that move individuals toward better citizenship, responsibility, nurturance, altruism, civility, moderation, tolerance, and work ethic (linley, joseph, harrington, & wood, ). conclusion the preceding exploratory phenomenological qualitative study (chapter ) used a purposeful sample of military veterans to develop an in-depth understanding of their reintegration process following amputation. the metatheory of resilience and resiliency was utilized as a conceptual framework to guide this qualitative inquiry. this research will add to a growing body of case study literature, and although qualitative findings are not generalizable to larger populations, the findings can provide transferability to similar populations. additionally, the profound understanding that results from such inquiry can certainly contribute to future military resilience education, maintenance, and enhancement that has not yet been fully explored and implemented, especially with respect to the altered physical body following amputation. such research can then serve to strengthen existing resilience programs and recovery efforts for military service members and veterans. references baltes, p.b., & staudinger, u.m. 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( ). vulnerable but invincible: a longitudinal study of resilient children and youth. new york: mcgraw-hill. werner, e.e., & smith, r. overcoming the odds: high risk children from birth to adulthood. ithaca: cornell university press. appendix g health education program example: body esteem, self-worth, and resilience with wounded warriors this curriculum is a session, once per week, health education program that includes multiple modalities of teaching and learning. each session will cover one program objective. the overarching goal of the program is to improve military personnel readiness to resiliently reintegrate following combat-related injury and disability. program goals . participants will develop higher levels of body esteem through cognitive, attitudinal, behavioral, emotional, and spiritual interventions. . participants will develop higher levels of self-esteem and self-worth through cognitive, attitudinal, behavioral, emotional, and spiritual interventions. . participants will develop higher levels of holistic resilience through cognitive, attitudinal, behavioral, emotional, and spiritual interventions, in preparation for reintegrating into community and family life outside of the military setting. program objectives introduction cognitive objectives ) define ‘body-esteem’ and demonstrate knowledge about how body- esteem is related to self-worth. ) discuss the benefits of warrior mind techniques (e.g. grounding breathing, deep listening, etc.). ) demonstrate knowledge of each resilient force (childlike, noble, character, ecological, universal, intellectual, and essential) and the resilient journey. attitudinal objectives ) discuss how a past proactive journey has increased positive outlook on life’s challenges. ) discuss how at least one resilient force (e.g. childlike resilience, noble resilience) has improved self-worth. ) discuss who you are with regard to your dream and vision board. behavioral objectives ) develop and practice the secure place exercise. ) develop, practice, and demonstrate proficiency in warrior mind techniques. ) begin to demonstrate changes in sleep hygiene, eating behaviors, and exercise/movement behaviors. emotional objectives ) express joy through childlike resilience: through play (e.g. charades, dancing, mad libs). ) recognize the “bigger picture” and experience ecological resilience/related emotions (e.g. relaxation, comfort, hope) through star gazing; experience nobility, and transform fear into courage, through adaptive sports participation. ) experience emotional connection with animals through equine-assisted therapy, and pet therapy. spiritual objectives ) demonstrate a conscious awareness of, and connection to, the heart, through writings of my heart, and principled life discussion/application. ) give and receive messages of love and respect to/from other participants. ) hold up a mirror that reflects spiritual identity (e.g. successes, strengths, good intentions/motives, spiritual qualities). detailed descriptions objective one/week one objective one assists participants to define ‘body-esteem’ and demonstrate knowledge about how body-esteem is related to self-worth. this objective engages verbal and linguistic learning through power point utilization, which will teach the students about body image, how it is developed, how it can be altered through injury, how it is related to self-worth, and how it can be repaired. an imagery exercise will be implemented to support students’ understanding of body esteem and self-worth. the following is a general summary of the imagery: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six. “remember back to a time when you were young, and felt completely carefree, your physical body was energetic, your mind was playful (pause, breathe). your biggest concern was no concern (pause, breathe). describe your physical body, what it meant to you, what it could do for you (pause, breathe). what are some of those qualities that your body still has? (pause, breathe). how do these qualities influence how you feel about yourself? (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also support this objective. participants will be encouraged to pair with a partner and complete a body tracing on butcher paper. determination music (e.g. rocky, chariots of fire) will be played in the background while each participant writes affirmations (e.g. strong, reliable, resilient, resistant to disease, masculine, feminine, agile, brave, courageous) inside his/her body contour. following this activity, a group discussion will be conducted. each participant will be encouraged to share his/her creation, and what he/she has learned about personal body esteem and self-worth. objective two/week two objective two will include participants in discussions regarding the benefits of warrior mind techniques (e.g. grounding breathing, deep listening, etc.). this objective will engage verbal and linguistic learning through power point utilization to teach the students about the techniques before actively participating in the activities later during the curriculum. interpersonal learning will be supported through group discussion, interaction, and feedback regarding the various techniques and individual ideas about when and where to use the warrior mind techniques. an imagery exercise will be implemented to promote students’ ability to remember who they are. the following is a general summary of the imagery: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six). “remember back when you first joined the military, the very first time you put on your uniform (pause, breathe). look in the mirror (pause, breathe). who do you see? (pause, breathe). describe yourself (pause, breathe). who are you? (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also support this objective. participants will be encouraged to pick one of their top personal values (values clarification). “paint a representation of your value on a rock that you can later keep with you everywhere you go (this is an ‘anchor’)”. inspirational music (heart of the warrior, dream warrior) will be played as participants complete their projects. objective three/week three objective three will facilitate participants’ abilities to demonstrate knowledge of each resilient force (childlike, noble, character, ecological, universal, intellectual, and essential) and familiarization with the resilient journey. this objective will involve verbal and linguistic learning through power point utilization to teach the students about resilient forces and the resilient journey before actively engaging in related activities later during the curriculum. interpersonal learning will be supported through group discussion, interaction, and feedback regarding the resilient forces and the resilient journey. an imagery exercise will be implemented. the following is a general summary of the imagery: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six). “you have had many struggles in your life (pause, breathe). think of a trial that has made you stronger (pause, breathe). what did you learn? (pause, breathe). what would you tell someone who was going through something similar? (pause, breathe). how would you guide them through it? (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also support this objective. participants will be supported in creating their personal statue of liberty. “personalize your statue in any way you want. how do the various aspects of your statue represent who you are?” victory music (olympic theme, statue of liberty on youtube under ‘victory music’) will be played during the construction of the statues. following the activity, a group discussion will be led, and participants will be encouraged to share their creations. objective four/week four objective four will facilitate participants’ discussions of how a past proactive journey has increased positive outlook on life’s challenges. this objective will engage verbal and linguistic learning through power point utilization to teach the students about the proactive journey before actively engaging in related activities later during the curriculum. interpersonal learning will be supported through group discussion, interaction, and feedback regarding past proactive journeys. intrapersonal learning will be supported through encouraging students to begin reflecting on a personal proactive journey. an imagery exercise will be implemented. the following is a general summary of the imagery: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six). “pick another of the trials that you have conquered (pause, breathe). how do you apply your strengths to a current trial? (pause, breathe). praise yourself for your accomplishments (pause, breathe).” when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also support this objective. “with a partner (battle buddy), share your experience, create a merit badge for your buddy’s accomplishments regarding his or her trial, and the strengths that they’ve gained. your partner will do the same for you. we will present them to everyone at the end of the exercise.” accomplishment music (e.g. pomp and circumstance) will be played while presenting the merit badges. objective five/week five objective five will facilitate participants’ discussions about how at least one resilient force (e.g. childlike resilience, noble resilience) has improved self-worth. this objective will employ interpersonal learning, and will be supported through group discussion, interaction, and feedback regarding each student’s chosen area of resilience to discuss. intrapersonal learning will be encouraged through individual reflection upon a chosen area of resilience and personal application. auditory learning will be supported through utilization of inspirational background music while students reflect on, and share their experiences. power points regarding each resilient force will be reviewed prior to implementation of the activities. an imagery exercise will be implemented. the following is a general summary of the imagery: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose [in the back of the throat] through a count of six). “discover and define your kingdom (pause, breathe). think of those whom you love, those who are important to you, those who care about you (pause, breathe). think of one way you served each of them (pause, breathe). if they asked you for help, how quickly would you respond? (pause, breathe). how quickly would each of them respond to you? (pause, breathe). how do you feel about each of these individuals? (pause, breathe). pick an act of kindness to do today (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will support this objective. “build your castle: http://www.stormthecastle.com/paper-castle/make-a-cardboard-castle.htm. invite your kingdom to join you in your castle. scribe the names of your kingdom members on the walls of your castle.” music from “braveheart” will be played during this activity, and a group discussion will follow. participants will be encouraged to share their thoughts. objective six/week six objective six will facilitate participants’ discussions about who they are with regard to their dream and vision boards. this objective will be geared toward verbal and linguistic learning through power point utilization to teach the students about the dream and the process of creating a vision board. physical and kinesthetic learning will be supported through actual creation of vision boards. logical and mathematical learning will be supported through students’ sharing their dream and how it relates to the vision boards they create. interpersonal learning will be supported through group discussion, interaction, and feedback regarding the dream and vision boards. intrapersonal learning will be supported through encouraging students to begin reflecting on their dream. an imagery exercise will be implemented. the following is a general summary of the imagery: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six). “imagine you are attending your ‘living memorial service’ (pause, breathe). those who love and care about you have gathered to pay tribute to your existence (pause, breathe). you are not there (pause, breathe). you are a fly on the wall, so you hear and see everything that is transpiring in this service (pause, breathe). describe the service (pause, breathe). who is there? (pause, breathe). what are they saying and doing? (pause, breathe). they see you for who you are (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also support this objective. participants will be encouraged to create a vision board. nobility music (e.g. music from dragon: the bruce lee story, dragon age origins on youtube) will be played while participants are creating their vision boards with multiple types of materials (e.g. paints, chalks, scrap cloth, glue, felt, magazines). objective seven/week seven objective seven will facilitate participants’ development and practice of the secure place exercise. this objective will be to solicit verbal and linguistic learning through power point utilization to teach the students the concepts of the secure place technique. visual and spatial learning will be supported through actual practice of and mastery of secure place technique. intrapersonal learning will be supported through encouraging students to reflect on the power of the technique. following the teaching, an imagery exercise will be executed. the following is a general summary of the imagery: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six). at this point, the instructor will teach the secure place protocol using self-administered bilateral stimulation while imagining the most secure, comfortable environment/location that the participant can imagine. “when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also support this objective. travel/vacation/national geographic magazines will be provided to make a collage that represents secure, calm locations. meditative, calming music (the secret, omharmonics.com, zen garden) will be played while the participants complete their collages. objective eight/week eight objective eight will assist participants to develop, practice, and demonstrate proficiency in warrior mind techniques. this objective will be geared toward verbal and linguistic learning through power point utilization to teach the students the concepts of the warrior mind techniques. visual and spatial learning will be supported through actual practice of and mastery of the techniques. intrapersonal learning will be supported through encouraging students to reflect on the power of the techniques. the instructor will then teach grounding breathing and mind clearing exercises (warrior mindtm protocol). following the teaching, an imagery exercise will then be practiced. the following is the essence of grounding breathing and mind clearing: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose [in the back of the throat] through a count of six). “when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also support this objective. “what does your breath look like as you are releasing stress, tension, and negativity? use finger paint to create a replication of your breath and clear mind.” music (warrior mind fundamentals) will be played as the participants are creating replications of their calming breaths and clear minds. objective nine/week nine objective nine is designed to help participants begin to demonstrate changes in sleep hygiene, eating behaviors, and exercise/movement behaviors. this objective will be geared toward verbal and linguistic learning through power point utilization to teach the students the concepts of healthy sleep hygiene, intuitive eating, and adaptive sports. visual and spatial learning will be supported through actual practice of and mastery of the techniques. interpersonal learning will be supported through group interactions in sleep hygiene discussions, healthy meal preparations, and team adaptive sports participation. intrapersonal learning will be supported through encouraging students to reflect on the power of the techniques. an imagery exercise will be practiced. the following is a general description of the imagery exercise: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of six, and out through the nose (in the back of the throat) through a count of six). “imagine you have just awakened from the most restful night’s sleep you have ever had (pause, breathe). you recall a vivid positive dream (pause, breathe). what is the dream? (pause, breathe). how do you feel in your body as you experience these positive recollections, feelings of complete recuperation, and eager anticipation for today? (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music will also support this objective. “scribble down as many negative aspects that you have experienced due to insomnia, poor eating, and lack of exercise (e.g. “i hate my job,” “all i want to do is sleep,” “i have no energy,” “i’m sick all the time,” “i’m tired, bored, overweight, unmotivated, disabled”). “we will then take a trip to the fire pit, start a fire, listen to victory music (e.g. olympic theme) while we move/dance around the fire, and one-by-one, throw our negative aspects into the fire. this is a celebration!” the movement/dancing around the fire is an adaptive sport-type activity that will prepare the participants for more rigorous sporting endeavors (e.g. adaptive skiing, challenge course). following the fire pit activity, participants will prepare an intuitive snack. objective ten/week ten objective ten is designed to support participants in expressing joy through childlike resilience: through play (e.g. charades, dancing, mad libs). this objective will support visual and spatial learning through actual engagement in childlike play. interpersonal learning will be supported through group discussions and interactions with regard to the play activities. auditory learning will be supported through musical interaction, and kinesthetic learning will be supported through dance and movement to music. intrapersonal learning will be supported through encouraging students to reflect on the power of the techniques. an imagery exercise will be utilized to enhance participants’ emotions. the following is a general description of the imagery exercise: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six). “go back to the happiest time in your childhood (pause, breathe). think of one of your favorite games that you played (pause, breathe). your friends are playing with you (pause, breathe). is it daytime or nighttime? (pause, breathe). are you inside or outside? (pause, breathe). what sounds do you hear? (pause, breathe). are you listening to music? (pause, breathe). notice your surroundings (pause, breathe). notice how carefree you are (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” a group discussion will follow to brainstorm different ideas that participants discovered during the imagery exercise. art and music will also support this objective. “we will discuss favorite childhood games, and pick one to play that everyone can play.” artistry will be created through the actual activity. objective eleven/week eleven objective eleven will assist the participants to recognize the “bigger picture” and experience ecological resilience/related emotions (e.g. relaxation, comfort, hope) through star gazing; experience nobility, and transform fear into courage, through adaptive sports participation. this objective will be geared toward visual and spatial learning through the imagery of stargazing and actual engagement in childlike play. interpersonal learning will be supported through group discussions and interactions with regard to team adaptive sports and challenge course activities. auditory learning will be supported through listening to the sounds of nature. kinesthetic learning will be supported through physical activity and movement (e.g. adaptive skiing, basketball, cycling, horseshoes, challenge course). intrapersonal learning will be supported through encouraging students to reflect on the power of the techniques. an imagery exercise will be utilized to enhance participants’ emotions. the following is a general description of the imagery exercise: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six). “imagine that you are about to embark on the space shuttle (pause, breathe). you arrived at nasa last night and have had a restful night’s sleep (pause, breathe). you are given a new uniform for space travel (pause, breathe). you take off your army acus, and put on the nasa uniform (pause, breathe). you board the space shuttle and take off straight up into the sky (pause, breathe). you land on a planet that is similar to earth (pause, breathe). you will make your new home here (pause, breathe). whomever you want can join you (pause, breathe). what will you do? (pause, breathe). what is your new life like? (pause, breathe). who will join you? (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and musical activities will also support this objective. “we will read infinity and me by kate hosford (children’s literature) together while listening to fantasy music (e.g., disney). draw a portrayal (snapshot) of your new beginning, with your personal mantra as the caption.” objective twelve/week twelve objective twelve will assist the participants to experience emotional connections with animals through equine-assisted therapy, and pet therapy. this objective employs interpersonal learning through group discussions and interactions with regard to animal activities. auditory learning will be supported through listening to the sounds of nature. kinesthetic learning will be supported through physical touch and interaction with animals. intrapersonal learning will be supported through encouraging students to reflect on the power of the activities. an imagery exercise will be utilized to enhance participants’ emotions. the following is a general description of the imagery exercise: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six). “visualize your favorite pet (pause, breathe). if you didn’t have a pet, remember when you wanted a pet (pause, breathe). think of a time when a pet comforted you, gave you hope and unconditional love (pause, breathe). what does it feel like to hug or just touch your pet (pause, breathe)? sense that connection and what it does for your sense of who you are (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also support this objective. participants will visit with pet therapy animals. “we will take photos of you with your favorite pet visitor. photos will be printed so you can keep it to remind you of your connection (this is an anchor). while the animals are visiting, we will listen to uplifting “pet” music (e.g. “you’ve got a friend in me”).” objective thirteen/week thirteen objective thirteen will help participants to be able to demonstrate a conscious awareness of, and connection to the heart, through writings of my heart, and principled life discussion/application. this objective will employ interpersonal learning through group discussions and interactions. verbal learning will be supported through writings of the heart. logical learning will be supported through abstract exploration of principled living. intrapersonal learning will be supported through encouraging students to reflect on the power of the activities. an imagery exercise will be utilized to enhance participants’ spirituality. the following is a general description of the imagery exercise: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready.” participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six. “imagine that you are covered with several blankets, both heavy and light (pause, breathe). begin to take each blanket off one by one, each representing an external aspect of you (pause, breathe). once you get all of the blankets off, who are you? (pause, breathe). what is in your heart? (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also support this objective. participants will create heart art with construction paper, and other materials. in the middle of the heart, write who you are. calming, relaxing, mystical music (e.g. meditation music, zen music) will be played while participants are constructing their heart art. objective fourteen/week fourteen objective fourteen will teach and encourage participants to give and receive messages of love and respect to and from other participants. this objective will be geared toward interpersonal learning through group discussions and interactions. verbal learning will be supported through giving messages of love. logical learning will be supported through abstract exploration of love. intrapersonal learning will be supported through encouraging students to reflect on the power of the activities. an imagery exercise will be utilized to enhance participants’ spirituality. the following is a general description of the imagery exercise: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready.” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six). “visualize a spiritual leader whom you respect (e.g. gandhi, dali lama, buddha, christ, the pope, thich nhat hanh) (pause, breathe). you are walking along a quiet path, just you and this person (pause, breathe). what is this person saying to you? (pause, breathe). how are you responding? (pause, breathe). how will you apply this conversation to your life? (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also be used to enhance this objective. “share your insights with the group.” the group will then write messages of love and respect (on post-it notes) to each person. each person will be highlighted in the center of the group, while group members place their post-it note on each person’s message board (poster board). poster boards will then be decorated as desired, with various materials and mediums. patriotic, inspirational music will be played during the activities. objective fifteen/week fifteen objective fifteen will assist program participants to be able to hold up a mirror that reflects their spiritual identity (e.g. successes, strengths, good intentions/motives, spiritual qualities). this objective will be geared toward visual and spatial learning through the use of imagery regarding a mirror’s reflection of spiritual identity. intrapersonal learning will be supported through encouraging students to reflect on the power of the activity. logical learning will be supported through investigating the mystery of the spiritual identity. an imagery exercise will be utilized to enhance participants’ spirituality. the following is a general description of the imagery exercise: (directions will be given in a quiet, dim, peaceful environment. language will be soft spoken and slower in speed). “sit in a comfortable, resting position and close your eyes when you are ready,” (participants will be instructed to take a series of six breaths in through the nose for a count of , and out through the nose (in the back of the throat) through a count of six). “reflect back to a walk with a spiritual leader (pause, breathe). think about what this person said to you (pause, breathe). use these messages to form your spiritual image (pause, breathe). what does this look like? (pause, breathe). now, assume a new role in your life based on your spiritual identity (pause, breathe). what is your role? (pause, breathe). what is your purpose? (pause, breathe). open your eyes and peer into the mirror (pause, breathe). how do you see your spiritual self? (pause, breathe). when you are ready, you may open your eyes and reintegrate into this room and this present environment.” art and music activities will also be used to enhance this objective. each person will be given a small mirror. the mirror will be glued onto construction paper and decorated according to creative nature regarding spiritual identity. participants will be encouraged to choose at least three words or short phrases that symbolize their spiritual identity. “creatively place these statements around your mirror. decorate as you desire”. meditational, hypnotic, calming music will be played while participants complete their creations. evaluations objective one the following questionnaire will be used to assess participants’ understanding of body esteem and self-worth: . which of the following best describes your body esteem? a. how you feel about the worth of your physical body b. the way other people view your physical capabilities c. how your feelings about your physical body contribute to your identity d. both a and c . what is the best definition of your self-worth? a. how much other people respect you b. how satisfied you are with yourself c. how much education you have d. how proud you are of your accomplishments e. both b and d . in what way is body esteem and self-worth related? a. they are not related at all b. when i feel good about my physical appearance, i feel good about who i am c. when i believe the things that other people say to be about my appearance, this affects how i feel inside. d. body esteem and self-worth are only related for females\ e. both b and c objective two the following questionnaire will be used to assess participants’ general understanding of the warrior mind techniques: . when can you use the warrior mind techniques? a. any time i want to use the techniques, i can use them b. never. they do not apply to me c. only when i am anxious or stressed . where can you use the warrior mind techniques? a. only at home b. only in a group setting c. anywhere . why are warrior mind techniques beneficial for you? a. they help me to connect my mind, body, and spirit b. they really do not help me at all c. they help me to be able to read other peoples’ minds d. they help regulate physical symptoms of stress and anxiety e. both a and d objective three the following questionnaire will be used to assess participants’ general understanding of the resilient forces and the resilient journey: . childlike resilience is: a. being immature and running away from home b. pretending not to understand what’s going on c. the drive for play, fun, adventure, and pleasure d. getting into mischief . “the yearning to be valued and feel important through the mechanism of service” is: a. noble resilience b. childlike resilience c. military life d. none of the above . i desire to have morals because i have: a. a criminal record b. character resilience c. a big family d. a purple heart . ecological resilience means: a. i do not care about recycling b. i’m happier when i am alone c. i yearn to be in enriching environments, with animals, and in nature d. all of the above . “maybe i believe in god, maybe i do not; but i do know that there is a greater strength out there than just me, by myself”. this is an example of: a. mystical thinking b. a religious philosophy c. universal resilience d. something a yogi would say . intellectual resilience includes: a. the drive to understand b. the drive to know c. the drive to control d. all of the above . the drive to have quality sleep, healthier eating patterns, and physical movement/exercise describes: a. essential resilience: the drive to live b. the impossible c. something i will try next year d. military life . which of the following describe the resilient journey? a. disruptions and chaos open up options b. life events and choices cause disruptions c. resilient reintegration occurs through wisdom gained d. all of the above objective four the following questionnaire will be used to assess participants’ general understanding of the proactive journey: (please rate the following on a point scale: =strongly disagree, =disagree, =neither agree nor disagree, =agree, =strongly agree) . i have had at least one challenging life event from which i gained wisdom and became a better person. . traumatic and chaotic life events can lead to resilient reintegration. objective five the following questionnaire will be used to assess participants’ general analysis of their chosen area of resilience: (please rate the following on a point scale: =strongly disagree, =disagree, =neither agree nor disagree, =agree, =strongly agree) . the essence of who i am comes from my innate resilient drives. . as i’ve learned about who i am through my resilient drives, my self- worth has improved. objective six the following questionnaire will be used to assess participants’ general understanding of the purposes of the dream and the vision board: (please rate the following on a point scale: =strongly disagree, =disagree, =neither agree nor disagree, =agree, =strongly agree) . my vision board helped me to conceptualize my qualities and virtues that define who i am. . i know who i am now. objective seven the following questionnaire will be given to program staff to assess participants’ ability to perform the secure place exercise: (to be completed by trained program staff) . by the end of this learning module, participant is able to demonstrate proper utilization of the secure place exercise. not at all rarely sometimes mostly objective eight the following questionnaire will be given to program staff to assess participants’ ability to implement grounding breathing and mind clearing: (to be completed by trained program staff) . by the end of this learning module, participant is able to demonstrate effective grounding breathing techniques. not at all rarely sometimes mostly . by the end of this learning module, participant is able to demonstrate effective mind clearing techniques. not at all rarely sometimes mostly objective nine the following questionnaire will be given in order to determine whether or not participants have begun to make changes in sleep hygiene, eating behaviors, and exercise/movement behaviors: (please rate the following on a point scale: =strongly disagree, =disagree, =neither agree nor disagree, =agree, =strongly agree) (to be completed by program participant) . i have implemented at least one new pre-sleep activity each night during the program. . i have awakened feeling well rested during the program more than i did before the program. . i have prepared and/or consumed at least one well-balanced, healthy meal each day during the program. . i have engaged in at least one physical/movement activity on of the days of the program. objective ten the following questionnaire will be given to participants to determine to what extent positive emotions were evoked during the activities: (please rate the following on a point scale: =strongly disagree, =disagree, =neither agree nor disagree, =agree, =strongly agree) (to be completed by program participant) . i felt joyful, excited, playful, and/or carefree when we played musical chairs during the program. objective eleven the following questionnaire will be given to participants to determine to what extent they are able to recognize the “bigger picture” and experience ecological resilience/related emotions: (please rate the following on a point scale: =strongly disagree, =disagree, =neither agree nor disagree, =agree, =strongly agree) (to be completed by program participant) . the star gazing and imagery exercises helped me to see the “bigger picture.” . i feel less fearful and more courageous after participating in the sports activities during the program. objective twelve the following questionnaire will be given to participants to determine the extent to which they were able to experience emotional connections with animals through equine-assisted therapy, and pet therapy: (please rate the following on a point scale: =strongly disagree, =disagree, =neither agree nor disagree, =agree, =strongly agree) (to be completed by program participant) . i felt a special connection with the horses in the equine activities during the program. objective thirteen the following questionnaire will be given to participants to determine the extent to which they were able to demonstrate a conscious awareness of, and connection to, the heart, through writings of my heart, and principled life discussion/application: (please rate the following on a point scale: =strongly disagree, =disagree, =neither agree nor disagree, =agree, =strongly agree) (to be completed by program participant) . i feel more aware of what is in my heart and how is feels for me to live a principled life. objective fourteen the following questionnaire will be given to participants to determine the extent to which they were able to give and receive messages of love and respect to/from other participants: (please rate the following on a point scale: =strongly disagree, =disagree, =neither agree nor disagree, =agree, =strongly agree) (to be completed by program participant) . i feel loved and/or respected by other program participants. . i am able to give love and respect to other program participants. objective fifteen the following questionnaire will be given to participants to determine the extent to which they were able to hold up a mirror that reflects their spiritual identity (e.g. successes, strengths, good intentions/motives, spiritual qualities). (please rate the following on a point scale: =strongly disagree, =disagree, =neither agree nor disagree, =agree, =strongly agree) (to be completed by program participant) . when i look into a mirror, i can clearly see my positive qualities. . my mirror strongly reflects back my strengths and successes to me. concluding point pretesting and posttesting may be implemented utilizing the following standardized assessment tools to further determine effectiveness of this pilot health education program: . body esteem scale . rosenberg self-esteem scale . connor-davidson resilience scale appendix h resilience programs in the u.s. military introduction since , over million u.s. military members have deployed to iraq and afghanistan (morgan & bibb, ). stressors such as the continuing deployments, and the operational tempo for those who do not deploy, increase the risk for military members to suffer from decreased mental health functioning. while most military personnel cope fairly well under difficult circumstances, many also experience difficulties handling stress at some point. it has been suggested that on-going mental health issues are rooted in one’s state of resilience; therefore, renewed support has emerged for efforts that target the fitness of military forces through enhancement of psychological resilience (land ; mullen, ). psychological resilience is defined as the capacity to adapt successfully in the presence of risk and adversity. it has also been proposed that there is a distinct difference between recovery and resilience (ballenger-browning & johnson, ). the term recovery indicates that a degree of psychopathology is present for a period of time, typically upwards of several months, following a traumatic event before returning to pretrauma levels. the term resilience reflects the ability of individuals to maintain relatively stable mental function throughout the course of events. resilience is most easily conceptualized as having four prerequisites: ( ) risk or predisposition to biopsychosocial or environmental conditions, ( ) exposure to a high-magnitude stressor, ( ) stress response, and ( ) return to baseline or higher functioning and symptom levels (ballenger-browning & johnson, ). there are certainly individual differences, and factors that account for such differences. recently, there has been significant interest in identifying characteristics of military individuals resilient to stressors such as those encountered on deployment, and there are a growing number of programs and strategies provided by the military and civilian sectors to encourage and support psychological resilience. the department of defense (dod) has made great efforts to address psychological care of service members, including unit-specific programs and interventions. the focus of this paper is to identify and summarize several resilience programs and interventions that are currently being supported and implemented through each branch of the u.s. military. a resilience program is one that targets any of the factors that research has shown to improve resilience and healthy responses to stress, and provides a means for helping individuals to incorporate resilience factors into their daily lives (meredith, sherbourne, gaillot, hansell, ritschard, parker, & wrenn, ). although military family resilience is of utmost importance, programs that specifically target only military families are not reviewed in this document. rather, this paper summarizes resilience programs that are specifically designed for active duty, guard and reserve, and veteran populations, with general reference to family resilience. army resilience programs army center for enhanced performance (acep) acep originated from the center for enhanced performance at the u.s. military academy in west point, ny, which has trained soldiers since . this program’s key components of training include ( ) mental skills foundations, ( ) building confidence, ( ) goal setting, ( ) attention control, ( ) energy management, and ( ) integrating imagery. the program provides ( ) mental skills education and biofeedback training for individuals and groups, ( ) unit predeployment and team-building training workshops, ( ) warfare language and culture courses, ( ) kinesthetic room training that uses high-tech simulations to sharpen soldiers’ skills, ( ) executive leader seminars to advance managerial proficiency for senior leaders, ( ) family readiness programs to inspire personal and family growth, ( ) warrior transition programs to promote successful transition from injury back to duty or civilian life, and ( ) a learning and teaching program for developing intellectual self-awareness and self-regulation. acep has now become a foundational aspect of comprehensive soldier fitness (meredith et al., ). armyfit see comprehensive soldier fitness. battlemind (resilience training) this program in the u.s. army’s first validated mental health training program, which was developed by walter reed institute of research (wrair) and was based on data from the land combat study, which followed an army infantry division from to (kim, kok, thomas, hoge, & riviere, ). mandated army-wide in , this program is now integrated into the army’s comprehensive soldier fitness curriculum. this program includes a series of life cycle and deployment cycle training modules and classes. life cycle training includes battlemind warrior resiliency, which teaches soldiers to be able identify peers at risk for psychological trauma. deployment cycle training is provided for soldiers and their spouses in preparation for all deployment transitions. soldier support training captures populations and subjects that life cycle and deployment cycle modules do not cover. the course modules are typically one to three hours of instruction and discussion. these occur primarily in platoon-sized classes. for some groups, such as health care providers, class sizes are much smaller. a -day train- the-trainer program is available for military chaplains. a master resilience trainer (mrt) course includes about service members and involves discussion, interactive techniques, and role-playing (castro, hoge, & cox, ; meredith et al., ). center for spiritual leadership (csl) this program is housed at fort jackson, s.c. and was originally designed to offer emotional and spiritual support to chaplains who were serving military personnel. the focus has been to provide retreats for chaplains and chaplain assistants who were returning from war. although retreats are no longer offered, the mission of the program is now to provide tailored pastoral products and programs to chaplains world wide for the purpose of self-care and spiritual resilience. religion-specific books are provided for christian, jewish, and muslim chaplains because each faith group approaches self-help in a specific way. other resources are also provided that address different issues that any soldier may use, not just chaplains. responsible for providing support material army wide, the csl has distributed more than , resources in and to active duty, national guard, and army reserve unit ministry teams (umts). the center also participates in the chaplain annual sustainment training (cast) events. cast is a symposium where umts from around the world meet to gather much-needed information and training guidance in the former of presentations and handouts. csl has a representative at each cast, who sets up a booth and distributes resources, including books and flyers. the csl staff periodically gives mobile training as well, traveling to different installations to provide support. the csl has supported the spiritual fitness center at fort hood, texas, as well as the tradoc human dimension, and comprehensive soldier fitness. the staff uses video teleconferencing to collaborate with and support peers overseas and in war zones (simkins, ). comprehensive soldier fitness now called comprehensive soldier and family fitness (csf ), this program is based on the penn resilience program, and encompasses aspects of many of the other army programs that address resilience. it is the largest military resilience program in operation, and has been designed to enhance performance and build resilience for soldiers, their families, and army civilians through five dimensions: social, emotional, family, spiritual, and physical. there are three main components to csf : ( ) online self-development, ( ) training, and ( ) metrics and evaluation. many of the csf concepts are based on theoretical and practical aspects of dr. martin seligman’s positive psychology. csf provides hands-on training and self-development tools so that members of the army family are better able to cope with adversity, perform better in stressful situations, and thrive in life. csf has training centers at army installations across the united states that provide resilience and performance enhancement training. the program is an integral part of the army’s ready and resilient campaign that promotes physical and psychological fitness and encourages personal and professional growth. csf utilizes master resilience trainers (mrts) to deliver annual skills training to soldiers and families (reivich, seligman, & mcbride, ). a newer program, army fit, is also part of csf as an online self-assessment and self-development environment for soldiers, families, and army civilians. once the global assessment tool (gat) . , a self-evaluation measure, is completed, an individual is given access to recommendations on how to improve resilience and performance (based on the individual gat score, and access to a self-improvement blog. individuals are also able to join several online health and fitness communities with a wide range of resources, are able to compare personal improvements with improvements of friends, and can earn improvement badges (armyfit, ). mindfulness-based mind fitness training (mmft) mmft (pronounced “m-fit”) is based on a well-established course, mindfulness- based stress reduction, which has been shown to improve attention functioning and reduce the negative effects of stress. mmft has been tailored specifically for military predeployment. the course teaches mindfulness stress resilience skills and applications to counterinsurgency environments. exercises are to be practiced at least minutes per day during training. the program includes hours of teaching over weeks, is typically delivered on site at organizations across the nation, to groups of - participants at a time. the curriculum is also taught in -day intensive courses. the program is primarily funded by the army; however, it is available to all military service members (meredith et al., ; mind fitness training institute, ). provider resilience training not long after the events of september , , and the initiation of the global war on terror (gwot), members of the soldier and family support branch (sfsb) of the army medical department center & school (ameddc&s) began to consider issues related to the effects of the conflict on healthcare providers. they realized then that the gwot might well be a difficult and protracted effort. at that time, the concept of “care for the caregivers” had already received attention in such areas as geriatric psychiatry and behavioral medicine, as mental health professionals had begun to observe and respond to the effects of prolonged care-giving on family members of the chronically ill, particularly those with dementia. initially, the sfsb’s interest in compassion fatigue, secondary trauma, and caregiver burnout resulted in briefings provided for a few courses at the amedd. soon, however, decisions were made to teach prt principles in all amedd courses, to create a distance learning prt video, and to create mobile training teams (mtt) to take prt products on the road. at the same time, the sfsb decided to develop a program that would make prt available to members of the amedd community, and to identify and teach special prt trainers and supervisors who would be embedded within most military medical treatment facilities and regional training commands, and whose job it would be to provide ongoing prt education, assessment, and interventional action to medical treatment facility providers. after numerous meetings and briefings, the program was approved by the surgeon general, and launched in (boone, camarillo, landry, & de lucia, ). healthcare providers from across the army medical department can complete three phases of prt training. the first phase involves administration of the proqol a compassion assessment tool, for which immediate feedback is given to the provider regarding his current levels of compassion satisfaction (the pleasure one has from doing one’s work well), compassion fatigue (work-related stress or trauma), and burnout (a feeling of hopelessness in dealing with one’s occupational circumstances). this phase also has a brief, but extremely important, prt video that sets the stage for one’s ongoing self-care response to the challenges to wellbeing brought on by difficult work. phase two involves additional, detailed education into the markers of provider fatigue and the pathways to resilience. during phase two, the healthcare provider discusses with his or her trainer the personal meaning of the proqol results and maps out a self-care plan. this plan serves as the foundation of the provider’s commitment to developing a positive, resilient attitude towards work, home, and all of life. the final phase, a birth-month activity, involves proqol reassessment and, if necessary, a fine-tuning of the self-care plan. at any time between the program’s phases, prt trainers are readily available to assist individuals with questions or concerns that relate to provider fatigue, burnout, or the self-care plan (boone et al., ). ready and resilient see comprehensive soldier fitness. warrior adventure quest warrior adventure quest (waq) is an army reset training tool designed to introduce soldiers to activities that serve as alternatives to aberrant behaviors often associated with accidents involving recently redeployed soldiers. according to the u.s army combat readiness/safety center, between october and october , soldiers died as a result of motor vehicle and personal injury accidents within one year of returning from deployment. about % of these deaths occurred within the first days postdeployment and about % within days postdeployment. for this reason, waq targets soldiers during the reset phase of a deployment cycle (mahoney, ). this tool presents coping outlets to help soldiers realize their own new level of normal after deployment and move on with their lives. waq combines existing mwr (morale, welfare, and recreation) outdoor recreation high adventure activities (e.g., rock climbing, mountain biking, paintball, scuba, ropes courses, skiing, zip lines, white water rafting, and others) with a leader-led after action debriefing (l-laad) tool developed by army medical department center and school (amedd) (u.s. army mwr, ). the waq program has been developed into five phases: phase i, leader training, is for all e- and above participants and teaches them how to facilitate a leader- led after action debrief (l-laad) in response to a significant event in an operational environment. phase ii, leader training, teaches these unit leaders how to utilize the same l-laad technique when facilitation surrounds an outdoor adventure activity. phase iii, soldier training, presents to all soldier participants concepts like comprehensive soldier fitness, combat operational stress control and post traumatic growth, coping skills, and how it all relates to the warrior adventure quest program. phase iv, activity training, is the outdoor adventure activity (e.g., paddling, riding, climbing, etc.) where team building is combined with challenging activity skills. phase v is the actual facilitation of the l-laad by the unit leaders with their unit members to realize connections between the activity they have just experienced and the challenges they may be experiencing in their daily lives (u.s. army mwr, ). an important aspect of the waq is that it provides an informal screening tool by enabling leaders to identify soldiers who might need additional help. waq has formed close bonds and working relationships with many army organizations. through these collaborations, waq is able to track statistical data about participants and how the program has initiated positive changes in their behavior (mahoney, ). warrior resilience and thriving (wrt) warrior resilience and thriving, and warrior family resilience and thriving, were the army’s first cognitive resilience training classes based on dr. albert ellis’ rational emotive behavior therapy (rebt). wrt has been based on rebt’s straightforward a-b-c self-help model that seems to appeal to soldiers who have little time for inefficiency, dependency, or overly emotional expression-oriented interventions (jarrett, ). the a-b-c model states that it normally is not merely an a, adversity (or activating event) that contributes to disturbed and dysfunctional emotional and behavioral cs, consequences, but also what people b, believe about the a, adversity. a, adversity can be either an external situation or a thought or other kind of internal event, and it can refer to an event in the past, present, or future. the bs, beliefs that are most important in the a-b-c model are explicit and implicit philosophical meanings and assumptions about events, personal desires, and preferences. the bs, beliefs that are most significant are highly evaluative and consist of interrelated and integrated cognitive, emotional, and behavioral aspects and dimensions. according to rebt, if a person's evaluative b, belief about the a, activating event is rigid, absolutistic, and dysfunctional, the c, the emotional and behavioral consequence, is likely to be self-defeating and destructive. alternatively, if a person's evaluative b, belief is preferential, flexible, and constructive, the c, the emotional and behavioral consequence is likely to be self-helping and constructive. through rebt, by understanding the role of their mediating, evaluative, and philosophically based illogical, unrealistic, and self-defeating meanings, interpretations, and assumptions in upset, people often can learn to identify them, begin to d, dispute, refute, challenge, and question them, distinguish them from healthy constructs, and subscribe to more constructive and self-helping constructs (dryden, davis, & ellis, ). rebt is a no-nonsense counseling approach influenced by greco-roman stoicism that allows soldiers to view rebt as training instead of therapy. this allows them to directly versus passively solve problems. stoicism, a foundational element in rebt, is a philosophy that promotes self-control, personal fortitude, detachment, and civic responsibility through moral excellence, rationality, and management of perceptions and evaluations. rebt is a reality-accepting, rational approach to putting combat, separation, and loss into perspective, as it teaches and promotes that the concepts and philosophies of life of unconditional self-acceptance, other-acceptance, and life- acceptance are effective philosophies of life in achieving mental wellness; and that people had better accept life with its hassles and difficulties that are not always in accordance with their wants, while trying to change what they can change and live as elegantly as possible with what they cannot change. preparing for, resisting, and managing future traumas that may produce ptsd, and promoting posttraumatic growth (ptg) is a main focus of wrt. wrt also acknowledges some risk factors that may predispose soldiers for ptsd including intelligence, previous trauma, and personality style (jarrett, ). wrt has provided foundational support to the development of comprehensive soldier fitness. finally, several army bases support base-level resilience centers. for example, fort bliss has the restoration and resilience center that was established in by dr. fortunado, a psychologist, vietnam veteran, and former benedictine monk. he brings the eastern practices of reiki, acupuncture, and massage to the center. soldiers also have traditional talk therapy and group therapy. each soldier has a partner with whom to go through the program. the main goal of the program is to assist soldiers to apply the skills they are learning to outside environments (giles, ). similarly, fort hood hosts the resilience campus, which encompasses a city block on the base. the spirituality center provides meditation guidance and other eastern practices, while the wellness center offers several programs that bridge mind and body fitness. some of the programs include biometric testing, biofeedback, physical fitness training, tai chi, yoga, financial counseling, smoking cessation, substance abuse counseling, and nutrition guidance, among others. new resilience-focused programs and centers are continuously being developed and implemented on army bases across the country (graham, ). navy/marine corps resilience programs combat operational stress control (cosc) cosc encompasses all marine corps and navy policies and programs designed to prevent, identify, and holistically treat mental injuries caused by combat or other military operations. the cosc model is unit leader-oriented, multidisciplinary, integrated throughout the organization, without stigma, consistent with the warrior ethos, and focused on wellness, prevention, and resilience. the current cosc model was developed in by a working group of marine leaders, chaplains, and medical and mental health professionals. marines and sailors receive cosc training in each career school and for any deployment over days. cosc training for military leaders emphasizes five core leader functions: to strengthen (e.g., to promote stress inoculation, coping skills, and social cohesion), to mitigate (e.g., to prevent stress injuries through monitoring and alleviating stressors), to identify at-risk individuals, to treat (e.g., by self- aid, peer support, or direction to mental health professionals), and to reintegrate those with stress injuries back to full duty. most cosc training occurs in classrooms, usually within days of deployment, again within days of departure from theater, and then again between to days after return (meredith, ). oscar (operation stress control and readiness) is also part of cosc. oscar differs from any previous military mental health effort in that oscar embeds mental health expertise directly in operational units at the level of the regiment, rather than attaching mental health personnel to external medical treatment facilities or external combat stress teams. oscar psychiatrists, psychologists, and psychiatric technicians are organic to the military units they support in the same way battalion surgeons, corpsmen, and chaplains are organic to their operational units in the marine corps. oscar mental health providers train with their marines prior to deployment, they accompany their marines into forward operational areas during deployment, and they continue to provide support to their marines after they return from deployment. oscar builds a bridge across the cultural gap between warfighter and mental health professional the only way such a bridge can be built—by drawing the mental health professional as fully as possible into the culture and life of the military unit to be supported (nash, ). an additional feature of oscar, as developed in the nd marine division, is the assignment of full-time marine staff noncommissioned officers (e and above) to the oscar teams attached to infantry regiments. oscar staff noncommissioned officers serve to further integrate the mental health efforts of the oscar mental health professionals with the line noncommissioned officers who are the “center of gravity” of combat/operational stress control in the marine corps. oscar noncommissioned officers are not corpsmen or medics, but experienced warfighters who help build and maintain bridges between the science of psychiatry and the art and science of military operations (nash, ). credo in the beginning, credo stood for “chaplains response to the emerging drug order.” credo began in as an experiment led by chaplains and lay persons to confront the use of drugs by navy and marie corps personnel. because of its thrust, the assistant chief of naval personnel for human goals provided funding to continue the operation of the program. over time, credo evolved in its approach to a new form of retreat ministry that was applicable to a broad spectrum of personal and spiritual development rather than just individuals with drug-related problems. as a result, the chief of chaplains assumed sponsorship of the credo program, and with the change in emphasis came a change in the meaning of the acronym, which now stands for “chaplains religious enrichment development operation.” the positive, proactive, preventative emphasis and results of credo emphasizes the navy/marine corps tradition of “taking care of our own” (credo, ). credo exists to supplement local commands in readiness of sea-service personnel and their families through specially designed retreat ministries. retreats include personal growth, marriage enrichment, reclaiming the inner child, spirituality, christian disciplines, men’s/women’s retreats, family retreats, and teen retreats. the objectives are to assist personnel to ( ) gain self-esteem and self-understanding, ( ) learn to respect themselves and others, ( ) accept responsibility for their lives, and ( ) develop healthy spirituality (credo, ). navy and marine corps public health center this center is headquartered in portsmouth, va, has over people across six locations nationwide, and provides worldwide force health protection services to naval and joint forces in support of the national military strategy. among other services, the public health center provides the guide for psychological and emotional wellbeing. this guide outlines programs and services that facilitate readiness and resilience, prevent illness and injury, hasten recovery, and promote lifelong healthy behaviors and lifestyles. the guide is designed as a resource to introduce the topics of psychological and emotional wellbeing and stress management, and it introduces programs such as the relax relax toolkit, stress zones, and operation healthy reunions. in essence, these center locations are central to providing navy personnel with needed resources related to recovery, resilience, and posttraumatic growth (u.s. navy, ). navy special warfare resilience enterprise the naval special warfare (nsw) command, in collaboration with the navy seal foundation, has designed and implemented programs that offer events for sailors and their families to enhance family relationships during and after deployment. in addition, retreats are offered that are part of a unique program to build resilience within the force of special operators (e.g., seals). this is accomplished through three phases: ( ) individual sailors’ and family members’ needs are assessed ( ) educational programs and services tailored to those needs are provided ( ) newly reunited families are supported through the reintegration process after deployments. the assessments (phase ) provide important insight into individual and family psychological and financial wellbeing. for sailors, these screenings represent a baseline that, when compared to future postdeployment assessments, will provide objective measures for traumatic brain injuries and combat stress symptoms. the findings also help the command tailor the training, education programs, and other activities that can be offered to meet the sailor’s needs. these efforts range from interpersonal communication workshops to parenting and financial planning classes to command-sponsored activities for spouses and children. as part of this effort, the nsw has piggybacked on the marine corps’ project focus—families overcoming under stress—program. the marine corps launched focus at camp pendleton, ca as has expanded it to several other locations to help families cope with multiple deployments (miles, ). oscar see combat operational stress control (cosc). performance and resiliency program (perres) this program is an outgrowth of an effort by marine special operations command (marsoc) to build resilience among special operators in all service components whose ranks sustain grueling deployment schedules. the program is structured to three tenets—physical, mental, and spiritual wellbeing—through enhanced fitness and nutrition, and sound teaching methods. the perres training team consists of or more health professionals with expertise in strength conditioning, fitness, nutrition, physical therapy, and mental health. the program is for anyone assigned to marsoc, plus family members and civilians. the entire community can learn what it takes to be in peak physical and mental condition for battle (cavallaro, ). reintegrate, educate and advance combatants in healthcare (reach) this program is sponsored by the navy bureau of medicine (bumed). it is a mentorship program that provides career advice, education counseling, experience through part-time employment with on-the-job training, and the potential of job placement for qualified graduates. reach is designed for wounded service members with a strong likelihood of a % or more disability rating based on dod or va standards. the program is specifically targeting wounded warriors interested in pursuing careers as respiratory therapists, dental assistants, medical technicians, physician assistants, nurses, medical recorders, medical coders, diagnostic radiologic technicians, occupational therapists, and case managers (pilip-florea, ). reach assigns each candidate a dedicated person who acts as a career counselor helping the service members select and achieve the necessary requirements among a variety of occupational career fields in medicine and health care. the counselor will assist the service members to enroll in school, assign them to mentors and coaches, provide part-time jobs and on-the-job training as needed to candidates throughout their education, and help them with job placement, after they graduate from the program (pilip-florea, ). air force resilience programs comprehensive airman fitness (caf) caf is designed very similar to the army’s csf with most of the same core concepts. caf is based on four pillars: physical, social, spiritual, and mental. although slightly different, these pillars reflect csf core principles. caf is a fledgling program in comparison to csf , and the air force is still developing core programs, including “safety day,” “resilience day,” and “wingman day,” which are all methods that the air force has developed to incorporate resilience training in the form of “caf days.” commanders are expected to implement a caf day for their airmen every quarter, and each quarter focuses on a different pillar of resilience. a caf day can be as simple as a team building exercise in a conference room, a process improvement event within a work center, or a hiking event. caf also promotes the “five cs”: care, commit, connect, communicate, and celebrate. in essence, caf is very similar in theoretical structure to csf , yet it is a fledgling program compared to csf , and has much fewer components and different methods of delivery at this point in time (air combat command, ). landing gear the air force’s landing gear program, initiated in , mentally prepares airmen for deployment conditions before they travel down range. additionally, the program provides assistance to airmen who may suffer from traumatic stress and connects them with a variety of resources upon their return from deployment. before landing gear went into effect, airmen received base-specific predeployment briefings only. now, landing gear has a much broader focus, and has a program that every base uses for pre- and postdeployment education and support, as well as wartime environmental training and support (u.s. air force, ). leadership pathways this program encompasses a series of strategic courses adopted by the air mobility command (amc) in . classes are offered that fall into one of the four pillars of caf: physical, mental, spiritual, and social. classes are available for airmen and their family members covering topics of healthy living, healthy family relations, child and teen rearing, finance, physical fitness, and relationship building skills, among others. each course provides the attendee a certain number of credits. the more credits that are acquired, the higher an individual climbs in title and recognition within the leadership pathways program. for example, earning credits will give the individual the wingman level, credits earns the leader level, and credits earns the warrior level. wingman, leader, and warrior levels earn recognition of group commander, wing commander, and amc commander, respectively. currently, the leadership pathways program is transferring from an all-paper tracker to an online version, which will facilitate airmen with registering, signing up for courses, and keeping track of credits and levels achieved (brown, ). national guard/reserve resilience programs national guard resilience program in response to the army national guard senior leadership’s priorities, several states have developed comprehensive social support and mental health initiatives to deepen soldier resilience. states with creative resilience programs include michigan, nevada, nebraska, california, new hampshire, ohio, wisconsin, maryland, delaware, illinois, montana, tennessee, and kansas. the michigan guard developed a program called buddy-to-buddy that trains soldiers at one of two levels to be able to identify other soldiers who may be in need of mental health intervention, and refer them for services. soldiers keep in contact with their buddies by telephone, email, and social media. the key to success with this program is that soldiers often feel more comfortable talking with a fellow soldier about behavioral health needs (carpenter, ). the nebraska guard, building upon the buddy-to-buddy concept, has concentrated its efforts to strengthen resilience through fellowship groups for veterans and their families. the groups help to resolve issues related to combat stress and readjustment from trauma experienced while on active duty. the goal of the fellowship groups is to guide individuals to cope more effectively with a wide range of issues, including family and relationship discord, depression and anxiety, anger, guilt, impulse control, decision making, communication styles, and self-medication (carpenter, ). the california guard has an embedded psychologist program where behavioral health professionals are assigned to units to increase opportunities for early intervention. ohio and new hampshire, along with their respective state mental health groups, have formed alliances for networked care in the communities, which promotes a continuum of care for soldiers and families in need. these states, as well as many other states, also focus on preventive work through regular unit-based resilience training (carpenter, ). the wisconsin guard has implemented a community wellness program that prepares soldiers for challenges that they might confront in their careers. the goal of the program is for soldiers, families, and civilians to be able to identify the realities of challenging environments, develop skills to thrive and be resilient in the face of these realities, and learn how to use these skills to help themselves and others (carpenter, ). a number of states have partnered with community agencies to promote soldier resilience. the maryland guard developed a service called partners in care, a network of faith-based organizations where volunteers provide practical services for soldiers and their families. delaware, illinois, and montana have similar networks (carpenter, ). the kansas guard seems to be at the forefront in developing a resilience training curriculum. kansas flash forward for leaders, a resilience training course, consists of sessions that address various topics including stress, family issues, chaplain services, and instruction on biofeedback evaluation. each module includes a video, lecture, and small group discussion. the flash forward program is taught by a team of three previously deployed service members, one chaplain or chaplain’s assistant, and one family support coordinator or director of psychological health. flash forward also has a train-the- trainer program (carpenter, ; meredith, ). the tennessee guard recently implemented a unique -hour course, warrior fit camp, for every air and army national guard airman and soldier who falls short of passing the assigned fitness test or remaining within weight limits. the course objective is to challenge participants to become their absolute best through the use of safe and effective tactical fitness and resilience training. the results are body fat loss, improved strength and stamina, increased confidence, and higher spirits. over the course of consecutive national guard drill weekends with approximately days in between, participants are immersed in proper form and safety, functional fitness programs for outdoor and indoor environments, fixed and free circuit fitness training, military-style obstacle courses and fitness tests, fitness games, partner-assisted exercises, individual tracking techniques, nutrition guidance, and extensive resilience training and life coaching. warrior fit camp lessons lead students through gradual crawl, walk, and run phases through progression, variety, and precision. the formula for success rests in the educational approach that total physical readiness exists under the following balance: % resilience training and life coaching, % proper nutrition, and % developmental physical fitness training (weichert, ). military-wide programs bootstrap this program is a veteran-created, integrated body/mind approach to stress management that blends modern scientific stress management principles with the ancient wisdom of yoga. bootstrap teaches participants to “recognize, release, and restore”; recognize unconscious habits and mental tendencies that create and perpetuate chronic stress; release these newly-recognized patterns; and restore the body and mind to balance. the -week curriculum leads participants through an examination of the various aspects of chronic stress while providing tools to manage stress in daily life. in addition to the weekly curriculum, bootstrap has an additional extensive online resource center and social media support network. linking military members and veterans to other treatment services as well as to one another provides support and encouragement in a safe online environment (bootstrap, ). dcoe the mission of the defense centers of excellence for psychological health and traumatic brain injury is to improve the lives of military service members, families and veterans by advancing excellence in psychological health and traumatic brain injury prevention and care. dcoe strives to be the trusted source and advocate for psychological health and traumatic brain injury knowledge and standards for the department of defense, and profoundly improve the system of care. dcoe is comprised of three centers: defense and veterans brain injury center, deployment health clinical center, and national center for telehealth and technology (defense centers of excellence, ). the military population is increasingly using complementary and alternative medicine therapies to enhance traditional medicine therapies they are receiving to treat their psychological health issues. therefore, the dcoe are on the forefront of research into integrative health techniques for enhancing mind-body-spirit wellness, and are working to provide resources and guidance on how best to promote the wellness, resilience, and performance of the total force (defense centers of excellence, ). additionally, the dcoe sponsors the real warriors campaign, which is a multimedia public education effort designed to combat the stigma associated with seeking psychological health care and encourage service members, veterans, and military families to use the psychological health resources available to them. through this campaign, dcoe is spreading the message that reaching out is a sign of strength. promoting the processes of building resilience, facilitating recovery, and supporting reintegration is something in which everyone can participate on behalf of returning service members and their families (defense centers of excellence, ). furthermore, dcoe manages in transition, a free voluntary program to provide behavioral health care support to service members and veterans as they move between health care systems or providers. personal coaches, along with resources and tools, assist service members during the transition period, empower them to make healthy life choices, and are available / via a toll-free call. family members are also encouraged to call the program to find out how their service member can get started with in transition. the department of defense developed in transition in response to its mental health task force recommendation to maintain continuity of care across transitions for service members and veterans (defense centers of excellence, ). moreover, dcoe hosts monthly webinars to provide information and facilitate discussion on a variety of topics related to psychological health and traumatic brain injury. each month features a different topic with presentations by subject matter experts followed by an interactive discussion period. the webinars are open to the public, and many offer continuing education credit. dcoe also offers an abundance of online resources for service members, families, veterans, and providers, including web-based case studies. finally, dcoe sponsors professional conferences, most notably the psychological health and resilience summit, formerly called the warrior resilience conference (defense centers of excellence, ). real warriors campaign see defense centers of excellence. warrior mind training since , the warrior mind training program has been helping service members achieve excellence, prepare for deployment, return home, recover from injuries and illnesses, and move on to rewarding lives and careers in the civilian world. the program has been taught on multiple military bases and veterans programs throughout the united states. the postdeployment, recovery, and transition program is broken into four phases. the decompression phase is taught for veterans returning from deployment with combat stress or posttraumatic stress. it is taught in conjunction with the foundation phase. the foundation phase is the basis of the mind training techniques. once the foundation is established, then class members move on to rebuilding, focusing on achieving success, happiness, and excellence in their lives. phase three, recovery and transition, focuses on maintenance of skills. phase four is termed achievement. warrior mind training utilizes specific meditation practices to improve concentration and relaxation. some of the techniques taught include grounding breathing, deep listening and balance, thought observation, focus on the present, positive focus, gratitude list, like list, humor, statements of focus, and mind clearing (warrior cycle, ). conclusion this appendix highlights many of the existing military resilience programs. however, due to the recent expansion of military and veteran resilience programming, only major curricula have been summarized. existing programs seem to have several commonalities, namely the implementation of mind-body-spiritual fitness as a means to strengthen resilience and wellbeing in social, emotional, physical, spiritual, and family realms. promoting resilience in the military is an increasingly important objective of the department of defense. fledgling programs that address resilience and psychological health are being implemented military-wide, and existing programs are being improved as research unfolds regarding promising preventive measures, interventions, and treatments. references air combat command ( ). comprehensive airman fitness. retrieved from http://www.acc.af.mil/library/comprehensiveairmanfitness/. armyfit ( ). retrieved from http://csf .army.mil/armyfit.html. ballenger-browning, k., & johnson, d.c. 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( ). marsoc program targets physical, mental health. marine corps times, february. retrieved from http://www.marinecorpstimes.com/article/ /news/ /marso c-program-targets-physical-mental-health. castro, c.a., hoge, c.w., & cox, a.l. ( ). battlemind training: building soldier resiliency. silver spring, md: walter reed army institute of research, dept of military psychiatry. credo. ( ). retrieved from http://www.imef.marines.mil/portals/ /docs/imef/ig/ ndqtrnewsletterfy /c redo-retreat-program-information.pdf. defense centers of excellence. ( ). about dcoe. retrieved from http://www.dcoe.mil/. dryden, w, david, d., & ellis, a. ( ). rational emotive behavior therapy. in k.s. dobson (ed.), handbook of cognitive behavior therapies (pp. – ). new york: the guilford press. giles, c. ( ). fort bliss’ restoration and resilience center. fort bliss bugle. retrieved from http://fortblissbugle.com/fort-bliss%e % % -restoration-and-resilience- center/. graham, k. ( ). resiliency campus. fort hood sentinel, june . retrieved from http://www.forthoodsentinel.com/story.php?id= . kim, p.y., kok, b.c., thomas, j.l., hoge, c.w., & riviere, l.a. ( ). technical report: land combat study of an army infantry division - . silver spring, md: walter reed army institute of research. pilip-florea, s. ( ). navy medicine helps wounded warriors reach for future. navy news, may. retrieved from http://www.navy.mil/submit/display.asp?story_id= . jarrett, t.a. ( ). warrior resilience and thriving: rational emotive behavior therapy (rebt) as a resiliency and thriving foundation to prepare warriors and their families for combat deployment and posttraumatic growth in operation iraqi freedom, - . journal of rational-emotive behavior therapy, , - . doi: . /s - - - land, b.c. ( ). current department of defense guidance for total force fitness. military medicine, (supp ), - . mahoney, d. ( ). army fosters resiliency among soldiers. clinical psychiatry news, / , retrieved from http://www.ecardiologynews.com/fileadmin/content_pdf/cpn/archive_pdf/vol is s / _main.pdf. meredith, l.s., sherbourne, c.d., gaillot, s., hansell, l., ritschard, h.v., parker, a.m., & wrenn, g. ( ) promoting psychological resilience in the u.s. military. santa monica, ca: rand corporation. miles, d. ( ). seals spearhead resiliency program for operators, families. dod news, october. retrieved from http://www.defense.gov/news/newsarticle.aspx?id= . mind fitness training institute. ( ). training. retrieved from http://www.mind- fitness-training.org/training.html. morgan, b.j., & garmon bibb, s.c. ( ). assessment of military population-based psychological resilience programs. militatry medicine, ( ), - . mullen, m. ( ). on total force fitness in war and peace. military medicine, (supp ), - . nash, w.p. ( ). operational stress control and readiness (oscar): the united states marine corps initiative to deliver mental health service to operating forces. in human dimensions in military operations—military leaders’ strategies for addressing stress and psychological support (p. ). meeting proceedings rto-mp-hfm- , paper . retrieved from http://www.rto.nato.int/abstracts.asp. reivich, k.j., seligman, m.e.p., & mcbride, s. ( ). master resilience training in the u.s. army. american psychologist, ( ), - . doi: . /a . simpkins, j. ( ). helping chaplains help themselves. retrieved from http://www.army.mil/article/ /helping_chaplains_help_themselves/ u.s. air force. ( ). landing gear aims to help at-risk airmen. retrieved from http://www.af.mil/news/articledisplay/tabid/ /article/ /landing-gear- aims-to-help-at-risk-airmen.aspx. u.s. army mwr. ( ). warrior adventure quest. retrieved from http://www.armymwr.com/recleisure/waq.aspx. u.s. navy. ( ). navy and marine corps public health center. retrieved from http://www.med.navy.mil/sites/nmcphc/health-promotion/psychological- emotional-wellbeing/pages/psychological-emotional-wellbeing.aspx. warrior cycle. ( ). warrior mind training. copyright , warrior cycle, inc. weichert, k. ( ). warrior fit camp: combining emotional resilience with physical fitness. military , july. retrieved from http://www.military .com/army/article/ -warrior-fit-camp-combining- emotional-resilience-with-physical-fitness. df p a phase i study of paclitaxel, etoposide, and cisplatin in extensive stage small cell lung cancer karen kelly, zhaoxing pan, marie e. wood, james murphy, and paul a. bunn, jr. division of medical oncology and the lung cancer program [k. k., m. e. w., p. a. b.] and department of preventive medicine and biostatistics [z. p., j. m.], university of colorado cancer center, denver, colorado abstract this phase i study was designed to determine the max- imally tolerated dose (mtd) of paclitaxel with standard doses of cisplatin and etoposide for patients with untreated extensive stage small cell lung cancer (sclc). secondary objectives were to determine the toxicities, response rate, response duration, and overall survival in this cohort. twenty-eight sclc patients were enrolled into four dose levels. all patients received a fixed dose of cisplatin at mg/m , i.v., day . the first group received etoposide mg/m , i.v. day and mg/m p.o., days – , whereas all subsequent groups received etoposide mg/m , i.v., day and mg/m , p.o., days – . the paclitaxel starting dose was mg/m , i.v., over a -h period and was escalated to and mg/m . cycles were repeated every days for a maximum of six cycles. granulocyte-colony stimulating factor was not given prophylactically but was allowed in subsequent cycles according to the american society of clinical oncologists guidelines. all sclc patients were evaluable for toxicity, and patients were evaluable for response. myelosuppression was the major toxicity, with grade neutropenia occurring in of patients ( %), but febrile neutropenia was uncommon and developed in patients ( %). grade thrombocytopenia and anemia were rare, occurring as isolated events in one patient each. dose- limiting peripheral neuropathy was observed at a paclitaxel dose of mg/m . grade nausea/vomiting and diarrhea were also noted at this dose level. five patients had complete responses ( %), and patients had partial responses ( %). the overall response rate was % with a median time to progression of . months, a median survival of months, and a -year survival rate of %. this three-drug combination of paclitaxel with cisplatin and etoposide is active with acceptable toxicity. neurotoxicity was dose lim- iting at mg/m of paclitaxel. neutropenia was frequent but not associated with significant morbidity. the recom- mended doses for future clinical trials are mg/m pacli- taxel, i.v., over a -h period on day with mg/m cispla- tin, i.v., on day and mg/m etoposide, i.v., on day and mg/m p.o. on days and with growth factor support. the southwestern oncology group has instituted a phase ii study with this dose schedule. introduction sclc is one of the most aggressive and lethal cancers in humans ( ). in , ; , new cases of sclc will be diagnosed in the united states ( ). combination chemotherapy is the cornerstone of treatment for these patients, which results in high initial responses rates of – % with % complete responses in limited stage and % complete response rates in extensive stage. despite high response rates, relapse and pro- gression develop in the majority of patients, and median survival is , year for patients with extensive stage disease, which represents about two-thirds of the cases ( ). failure to achieve durable remission rates in this chemosensitive tumor is believed to be attributable to the development of multiple drug resistance ( ). attempts to overcome this problem with the use of alter- nating non-cross-resistant drugs, dose-intense regimens, or drugs to block resistance have not been successful; therefore, continued focus on the development of new effective agents remains crucial ( – ). paclitaxel, a novel plant product that inhibits cell replica- tion by stabilization of microtubules, has shown antitumor ac- tivity in several solid tumors including sclcs ( , ). two single-agent trials with paclitaxel in sclcs have been com- pleted. the eastern oncology cooperative group administered paclitaxel at mg/m over a -h period every weeks to patients with untreated extensive stage disease ( ). because of the limited supply of paclitaxel, patients received a maximum of four cycles of paclitaxel. patients with progressive disease, stable disease, or a partial response received subsequent chem- otherapy with pe. the confirmed response rate to paclitaxel was % ( of patients), and the overall response rate was % ( of patients). confirmed responses required patients to have a % decrease in tumor measurements on two successive x-rays at least weeks apart while on paclitaxel therapy. patients who responded to paclitaxel on one x-ray but were switched to pe with a persisting response after weeks were scored as “unconfirmed responses.” the estimated median sur- vival duration was weeks. a similar trial, conducted by the received / / ; revised / / ; accepted / / . the costs of publication of this article were defrayed in part by the payment of page charges. this article must therefore be hereby marked advertisement in accordance with u.s.c. section solely to indicate this fact. this investigation was supported in part by a grant from bristol-myers squibb company and by national cancer institute grants p ca - and p ca - . to whom requests for reprints should be addressed, at division of medical oncology b , university of colorado cancer center, east ninth avenue, denver, co . the abbreviations used are: sclc, small cell lung cancer; pe, cispla- tin and etoposide; pet, pe and paclitaxel; g-csf, granulocyte-colony stimulating factor. vol. , – , november clinical cancer research research. on april , . © american association for cancerclincancerres.aacrjournals.org downloaded from http://clincancerres.aacrjournals.org/ north central treatment group, gave mg/m over a -h period every weeks with growth factor support ( ). partial responses were observed in % ( of patients). the median survival in this study was weeks. leukopenia was the major toxicity observed in both trials. the single agent activity of paclitaxel in sclc warrants combination with other active agents, and several regimens are presently being explored. our approach was to add escalating doses of paclitaxel to pe, which is the most commonly used regimen to treat sclc and produces grade hematological toxicity in , % of extensive stage sclc cases at standard doses ( , , ). with recent evidence suggesting that shorter paclitaxel infusion times were more convenient, produced less hematological toxicity, and were equally efficacious as the -h schedule, we designed the treatment to be given on an outpatient basis with a -h paclitaxel infusion plus pe, i.v., on day and oral etoposide on days and ( ). the primary objective of this trial was to determine the maximally tolerated dose of paclitaxel in combination with standard doses of pe (pet therapy). secondary objectives were to determine the response rate, response duration, overall survival, and the toxicity profile at each dose level. patients and methods eligibility. adult patients (. years) with histologi- cally or cytologically confirmed extensive stage sclc were eligible to participate in this trial if they had measurable or evaluable disease. patients with brain metastases were excluded. all patients were required to have normal organ function ac- cording to protocol guidelines, a performance status of , , and an expected survival of . months. patients with any evidence of a cardiac conduction abnormality were ineligible, as were patients receiving b blockers, calcium channel blockers, digoxin, or antiarrhythmic medications. patients with clinically evident hearing loss or symptomatic peripheral neuropathy were ineligible. patients with a prior history of malignancy other than nonmelanoma skin cancer or cervical carcinoma in situ were excluded if their disease-free interval was , years. patients could not have received prior chemotherapy, but previous sur- gery or radiotherapy was allowed. all patients were required to give written informed consent. treatment plan. the patients received chemotherapy with pet (bristol myers squibb, princeton, nj), according to the dose escalation schedule shown in table . a minimum of five patients were entered per dose level. all patients were premedicated with oral or i.v. dexamethasone ( – mg), cimetidine ( mg, i.v.), and benadryl ( mg, i.v.). paclitaxel was given i.v. over a -h period, followed by pe with mannitol over a -h period. additional posthydration was infused over a -h period. cycles were repeated every days for a total of six cycles, unless the patient had progressive disease or intolerable toxicity. the antiemetic regimen was dictated by the treating physician. g-csf was not given prophylactically but was al- lowed for patients who developed grade leukopenia, febrile neutropenia, or failure to recover their neutrophil count by day of a cycle. if a patient on g-csf developed grade leuko- penia or neutropenia, prolonged neutropenia, or febrile neutro- penia, a dose reduction of all three drugs was required, as stipulated in the protocol. for other grade hematological or nonhematological toxicities, dose modifications were executed per the protocol guidelines. treatment toxicity was graded ac- cording to the southwest oncology group criteria ( ). dose escalation was not allowed. the maximally tolerated dose was defined as one dose level below the level in which two of five patients developed grade leukopenia, neutropenia, febrile neutropenia, or a pro- longed neutrophil recovery . days while receiving g-csf, or grade anemia or thrombocytopenia, or grade nonhemato- logical toxicity. if – patient met these criteria at a given dose level, accrual continued to the next higher level. patients with measurable or evaluable disease were assess- able for response to therapy. clinical response was determined according to southwest oncology group criteria ( ). statistical analysis. time to progression curves and the kaplan-meier survival curves were produced in sas . using proc lifetest. time to progression was calculated from the time of diagnosis to progressive disease, relapse, death, or last fol- low-up evaluation. overall survival was calculated from the time of death or last follow-up evaluation as of june , . table dose levels of pet level no. of patients no. of eligible patients paclitaxel (mg/m ) cisplatin (mg/m ) etoposide (mg/m ) (day ) p.o. (days and ) (day ) p.o. (days and ) (day ) p.o. (days and ) (day ) p.o. (days and ) table patient characteristics all patients (n ) eligible patients (n ) median age age range – – male:female : : psa – : : : race w/b/h/na : : : : : : a ps, performance status; w, white; b, black; h, hispanic; na, native american. pet chemotherapy for sclc research. on april , . © american association for cancerclincancerres.aacrjournals.org downloaded from http://clincancerres.aacrjournals.org/ results twenty-eight patients were enrolled into this trial between july and january from participating institutions (see “appendix”). five patients were ineligible, three patients had limited disease, one patient was on a b blocker, and one patient had incomplete radiographs. patient characteristics for all patients and the eligible patients are listed in table . the majority of patients were white men, years of age, with a performance status of – . all patients received one or more cycles of chemo- therapy. the mean number of chemotherapy cycles for the eligible patients was . . patients on level received cycles, patients on level received . cycles, patients on level received . cycles, and patients on level received . cycles. two patients on level and four patients on level discontinued treatment because of toxicity. one patient on level died from toxicity and tumor progression during cycle . one patient on level was lost to follow up. the median follow-up time for all patients was . months and . months for the eligible patients. hematological toxicity. all patients were evaluated for toxicity. the most frequent grade toxicity was neutropenia, which occurred in of patients ( %) as shown in table . the neutropenia was observed in cycles and on dose level but gradually appeared with earlier cycles at the higher dose levels. on dose level , seven of eight patients developed neutropenia in cycle . febrile neutropenia occurred in of patients ( %). the addition of g-csf greatly reduced the incidence of grade neutropenia and febrile neutropenia. all patients recovered uneventfully. other significant hematological toxicities were uncommon. nonhematological toxicity. nonhematological toxici- ties occurred rarely in patients on levels and but increased with levels and , as shown in table . dose-limiting periph- eral neuropathy was seen at level . three patients developed grade peripheral neuropathy, one during cycle and two with cycle . all three patients were removed from study. no patient had a predisposing condition for neuropathy. grade diarrhea developed in two patients on level during cycle . the severe diarrhea was associated with fever and neutropenia in both cases. grade nausea and vomiting occurred in four patients on level , and grade nausea and vomiting developed in two patients on level . other nonhematological toxicities were infrequent. response and survival. twenty-two of the eligible patients received one or more cycles of chemotherapy and were evaluable for response as shown in table . the one inevaluable patient came off treatment during cycle because of toxicity and was not fully reevaluated. five patients had a complete response ( %), and patients ( %) had partial responses, for an overall response rate of %. in the five ineligible patients, one patient had a complete response, two patients had a partial response, one patient had stable disease, and one patient was inevaluable. response did not correlate with paclitaxel dose. the intent-to-treat analysis revealed that the median time to progression was . months, with a median survival of months. the - and -year survival rates were and %, respectively. for the eligible patients, the time to progression was . months, with a median survival of months. the - and -year survival rates were and %. fig. shows the overall survival for all patients and for the eligible patients. all patients have since died. sites of relapse. the sites of first relapse could be determined in patients, whereas four patients were not assessable: two responding patients were removed from study because of toxicity and switched to an alternative regimen, one patient refused a work-up at the time of progression, and one patient died during cycle . four patients relapsed in the brain. three additional patients had brain metastases as their first site of relapse but did not undergo evaluation to deter- mine other sites of involvement. six patients relapsed locally, and six patients relapsed at distant sites. table hematological toxicity (n ) level no. of patients gr pmn feb neu g-csf gr pmn feb neu g-csf platelets gr /gr hematocrit gr /gr / / / / / / / / / / / / / / / / / / / / / / / / / / / / / / / / gr pmn, grade polymorphic neutrophils; feb neu, febrile neutropenia, g-csf, without g-csf; g-csf, with g-csf. table nonhematological toxicity (n ) toxicity n level gr /gr a n level gr /gr n level gr /gr n level gr /gr cardiac diarrhea dizziness fatigue hypocalcemia hypomagnesemia hyponatremia hypotension infection nausea/vomiting neuropathy ototoxicity renal retinopathy stomatitis a gr, grade. clinical cancer research research. on april , . © american association for cancerclincancerres.aacrjournals.org downloaded from http://clincancerres.aacrjournals.org/ discussion despite attempts to improve survival in sclc by modify- ing the doses and schedule of drugs available previously, no major survival advantage has been achieved in the last years. recently, six new chemotherapy agents were reported to have activity sclc, including two taxanes (paclitaxel and docetaxel), two topoisomerase i inhibitors (irinotecan and topotecan), gem- citabine, and vinorelbine ( ). how to incorporate these new agents into more effective regimens is a dilemma. one strategy is to add a new drug to an established active regimen. paclitaxel, a promising new active agent in sclc, is well tolerated, making it an ideal candidate to combine with pe ( , ). this phase i trial revealed the maximally tolerated dose of paclitaxel combined with standard doses of pe was mg/m . at paclitaxel doses of mg/m , dose-limiting peripheral neuropathy occurred. the pet regimen was well tolerated and active with a complete response rate of %, an overall response rate of %, and a -year survival rate of %. not surprisingly, neutropenia was the most common toxicity, but it was not dose limiting because it was uncom- monly associated with fever of long duration or recurrent if g-csf was used after an episode of grade neutropenia. although % of patients developed grade neutropenia, only four patients ( %) developed an episode of febrile neutropenia. these patients subsequently received growth factor support, and febrile neutropenia reoccurred in only one patient. the neutropenia was frequently observed in cycle or but was abolished by the administration of g-csf, and no patient died from complications of neutropenia. paclitaxel did not significantly increase the occurrence of grade thrombocytopenia or anemia, with only one episode of each ( %) reported. a similar pilot trial using the pet regimen has been completed by glisson et al. ( ) at the m. d. anderson cancer center. grade or neutropenia occurred in five of six patients during cycle , with one patient developing febrile neutropenia when paclitaxel was administered at mg/m over a -h period on day , with cisplatin mg/m on day , and etopo- side mg/m on days – . a total of patients were treated on this regimen, with the majority of patients receiving pacli- taxel doses of – mg/m . grade neutropenia was re- ported in % of the courses administered. six percent of these courses were associated with febrile neutropenia. g-csf was not administered. when carboplatin was substituted for cisplatin in this regimen without cytokine support, hainsworth et al. ( ) reported an incidence of grade / leukopenia in % of patients treated with paclitaxel at mg/m with carboplatin at an auc of with etoposide / mg p.o., alternating days – , which increased to % when the dose of paclitaxel was increased to mg/m with an increased carboplatin dose to an auc of . significant thrombocytopenia and anemia were not seen in any study. dose-limiting peripheral neuropathy was observed with this triple drug combination. neurotoxicity has been reported by other investigators evaluating paclitaxel with cisplatin or carbo- platin. nair et al. ( ) conducted a pilot trial of paclitaxel plus cisplatin in extensive stage sclc and observed neurotoxicity in of patients treated on the high-dose arm ( mg/m of paclitaxel over a -h period with mg/m of cisplatin, but no report of peripheral neuropathy was mentioned by glisson et al. fig. kaplan-meier curve of overall survival for all patients and for the eligible patients. table objective response rate (n )a level #ptsb cr pr sd pd ne total ( %)c ( %) ( %) ( %) ( %) a responses in the five ineligible patients: complete response (cr), partial responses (prs), stable disease (sd), and not evaluable (ne). b #pts, number of patients; pd, progressive disease. c numbers in parentheses, percentages. pet chemotherapy for sclc research. on april , . © american association for cancerclincancerres.aacrjournals.org downloaded from http://clincancerres.aacrjournals.org/ ( ) in their preliminary analysis with low-dose paclitaxel, cisplatin and etoposide. hainsworth et al. ( ) reported two cases of significant peripheral neuropathy treated with mg/m of paclitaxel with carboplatin and etoposide. the low frequency of neuropathy in this study may be attributable to the majority of patients receiving only four cycles of therapy. in previous studies of paclitaxel plus cisplatin in non-sclc, dose- limiting peripheral neuropathy was reported by chaudry et al. ( ) at mg/m of paclitaxel infused over a -h period with mg/m of cisplatin in non-sclc. at , / mg/m pacli- taxel/cisplatin dose levels, no grade or greater neuropathy occurred. consistent with these results are those from sculier and klastersky ( ), who reported only grade – peripheral neuropathy in five of seven patients receiving mg/m pa- clitaxel over a -h period with mg/m cisplatin in their dose escalation trial. the degree of neurotoxicity seen in this study appears to be higher than predicted and suggests that the dose of paclitaxel as well as the number of cycles of therapy are impor- tant factors contributing to neurotoxicity. another possibility is that etoposide may be enhancing the neurotoxicity. nonhema- tological toxicities were infrequent in all studies. the overall response rate in this phase i trial was % with a median survival of months, which compares favorably to previous regimens. this small trial did not show a dose-response effect with paclitaxel, but other investigators have observed a difference in favor of higher doses. hainsworth et al. ( ) reported a response rate of % versus % with mg/m versus mg/m , which translated into a survival advantage for the high dose arm with a median survival of versus months with the low versus high dose of paclitaxel. nair et al. ( ) reported a dose response in their phase ii trial of paclitaxel plus cisplatin in exten- sive stage sclc. fifteen of patients ( %) receiving mg/m of paclitaxel responded as compared with of patients ( %) receiving mg/m of paclitaxel. median survival was prolonged for the patients in the high-dose paclitaxel arm, with a median survival of . and . months, respectively. in contrast, glisson et al. ( ) reported an impressive median survival time of . months with their low-dose pet regimen. two issues regarding this study deserve comment: (a) the accrual time on this study was lengthy and most likely attributable to competing protocols within our network, be- cause all sites are members of cooperative groups; and (b) the ineligibility rate was % (five patients). three of these patients were originally thought to have extensive stage dis- ease. all three cases were difficult; it was only after reeval- uation upon receiving pet treatment, for which they all were responding, that the treating physicians felt it was in the best interest of their patients to receive radiotherapy. one patient mistakenly did not reveal that she was on a b blocker. she received all six cycles of therapy and had a complete re- sponse. the last patient had only a noncontrast brain scan, although he was capable of having a contrast brain scan. this patient received one cycle of treatment but refused further therapy and reevaluation. all five patients received treatment and were included in the toxicity analysis. if these patients were included in the response analysis, the response rate was similar at %. survival was also similar in the intent-to-treat group as compared with the eligible group. in conclusion, pet is active with acceptable toxicity and deserves further investigation at the doses determined by this study. on the basis of these data, the southwest oncology group instituted a phase ii trial of mg/m paclitaxel with mg/m cisplatin and / mg/m etoposide with growth factor support in patients with extensive stage sclc. acknowledgments we are indebted to lyn magree and pam rosse for collecting and supervising the data collection. we are grateful to the physicians at the university of colorado cancer center and at the following participating institutions for accruing patients to this study. references . cook, r. m., miller, y. e., and bunn, p. a., jr. small cell lung cancer: etiology, biology, clinical features, staging, and treatment. curr. prob. cancer, : – , . . landis, s. h., murray, t., bolden, s., and wing, p. a. cancer statistics, . ca cancer j. clin., : – , . . ihde, d. c., and wood, a. 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: - . clin cancer res karen kelly, zhaoxing pan, marie e. wood, et al. extensive stage small cell lung cancer a phase i study of paclitaxel, etoposide, and cisplatin in updated version http://clincancerres.aacrjournals.org/content/ / / access the most recent version of this article at: cited articles http://clincancerres.aacrjournals.org/content/ / / .full#ref-list- this article cites articles, of which you can access for free at: citing articles http://clincancerres.aacrjournals.org/content/ / / .full#related-urls this article has been cited by highwire-hosted articles. access the articles at: e-mail alerts related to this article or journal.sign up to receive free email-alerts subscriptions reprints and .pubs@aacr.orgdepartment at to order reprints of this article or to subscribe to the journal, contact the aacr publications permissions rightslink site. click on "request permissions" which will take you to the copyright clearance center's (ccc) .http://clincancerres.aacrjournals.org/content/ / / to request permission to re-use all or part of this article, use this link research. on april , . © american association for cancerclincancerres.aacrjournals.org downloaded from http://clincancerres.aacrjournals.org/content/ / / http://clincancerres.aacrjournals.org/content/ / / .full#ref-list- http://clincancerres.aacrjournals.org/content/ / / .full#related-urls http://clincancerres.aacrjournals.org/cgi/alerts mailto:pubs@aacr.org http://clincancerres.aacrjournals.org/content/ / / http://clincancerres.aacrjournals.org/ services for student well-being in academic libraries : three challenges this is a repository copy of services for student well-being in academic libraries : three challenges. white rose research online url for this paper: http://eprints.whiterose.ac.uk/ / version: accepted version article: cox, a. orcid.org/ - - - x and brewster, l. ( ) services for student well-being in academic libraries : three challenges. new review of academic librarianship. issn - https://doi.org/ . / . . this is an accepted manuscript of an article published by taylor & francis in new review of academic librarianship on th august , available online: http://www.tandfonline.com/ . / . . . eprints@whiterose.ac.uk https://eprints.whiterose.ac.uk/ reuse items deposited in white rose research online are protected by copyright, with all rights reserved unless indicated otherwise. they may be downloaded and/or printed for private study, or other acts as permitted by national copyright laws. the publisher or other rights holders may allow further reproduction and re-use of the full text version. this is indicated by the licence information on the white rose research online record for the item. takedown if you consider content in white rose research online to be in breach of uk law, please notify us by emailing eprints@whiterose.ac.uk including the url of the record and the reason for the withdrawal request. mailto:eprints@whiterose.ac.uk https://eprints.whiterose.ac.uk/ services for student well-being in academic libraries: three challenges andrew cox liz brewster, senior lecturer, lancaster medical school, lancaster university, e.brewster@lancaster.ac.uk orcid: - - - abstract there has been a wave of interest in uk academic libraries in developing services to support student well-being. this paper identifies three fundamental and interrelated issues that need to be addressed to make such initiatives effective and sustainable. firstly, well-being has to be defined and the impacts of interventions must be measured in appropriate ways. secondly, there is a need to identify the true nature of the underlying social problem around well-being. thirdly, relevant approaches to the issue need to be located within the professional knowledge base of librarianship. introduction the last two or three years have seen a trend for academic libraries in the uk to develop activities explicitly designed to promote student well-being. several of these activities seem to be fairly well-aligned with the longstanding image of the academic library as a collection, for example providing fiction reading for pleasure (porritt, ). . many others have gone far beyond what might be considered usual academic library services such as hosting creative activities including the provision of colouring books and jigsaws, animal petting, and exercise classes. a number of professional events have been run round the theme of well-being and reports of such activities are emerging in the professional literature, eg four articles in the special issue of aliss quarterly ( , ) on the topic. another good illustration of the kind of thinking that lies behind these initiatives is the entertaining short piece explaining recent work around student well-being at the library of the university of warwick (brewerton and woolley, ). this article is based on a critical reading of these five papers. mailto:e.brewster@lancaster.ac.uk https://orcid.org/ - - - while respecting the authors’ sincerity and accepting the genuine benefits to users arising from such activities, there seem to be a number of fundamental issues with the argument made in these papers that we believe represent general challenges with the agenda around well-being for academic libraries. specifically, from a close reading of the papers we identify three fundamental, interrelated issues that library services around well-being have to address, namely: the need to define well-being and to evaluate the impacts of interventions in appropriate ways; the need to identify the true nature of the problem around well-being; and the need to locate solutions to the problem within the professional knowledge base. we share librarians’ belief that academic libraries do already contribute to student well-being, and can do so more, however, we argue that the issues exemplified in this emerging literature need to be addressed if libraries’ contribution to well-being is to be ensured. “study happy” one of the first descriptions on well-being related activities in a uk academic library is brewerton and woolley ( ) which reports activities run from onwards by university of warwick libraries under the banner “study happy”. the paper is ordered around the questions why, who and what. the first pages develop an argument about why services around well-being might be relevant to an academic library. they explain that organisationally the well-being related activities are offered by their community engagement team. the authors chart connections to library and university strategy. they also propose an underlying link to maslow’s ( ) theory of the hierarchy of needs. the short section about “who?”, extends this justification, seeking to account for why the library is the right place to host such services. the section on “what?” explains the kinds of activities they have organised, often in conjunction with other student-facing services, including origami and adult colouring, learning to play the ukulele, walking and yoga and patting dogs. the paper is amply illustrated with photographs. brewerton and woolley’s ( ) paper is one of the first papers to report on well-being work in libraries in the uk, however a number of previous papers from american authors have explored activities such as therapy dog programmes (e.g. bell, ), yoga sessions in the library (varman and justice, ; see also casucci and baluchi, ) and more recently, napping (wise, ). subsequently, in the uk a number of professional events have enabled librarians to share experiences of offering these services. emerging from these, there is the beginnings of a professional literature on the topic. for example, the magazine for the association of librarians and information professionals in the social sciences, aliss quarterly, published a special issue on the topic in january . papers in the issue echo the themes in brewerton and woolley ( ). houghton ( ) explores the benefits of bringing owls into the library at middlesex university. smith ( ) explains how the library at keele university is collaborating with other services around well-being at examination time. another paper describes the library’s involvement in the festival of wellbeing at teesside university (porritt, ). the papers contain a lot of practical advice on how to organise such events. such work is paralleled across the galleries, libraries, archives and museums (glam) sector, with work in museums (lackoi et al. and desmarais et al. ) and archives (brunton, ) exploring how these institutions impact well-being. in this paper we use this emerging uk professional literature as a convenient starting point to enter the argument. we would emphasise that our dispute is not with these well-meaning authors. we agree that libraries have a potentially important place in student well-being. the many activities the authors have organised may well have positively impacted student well- being. further, their works are typically a means of practical knowledge sharing, not intended to be heavily-theorised justification for these services. a critique of this work may seem unfair. however, we suggest that analysis of these papers assists in identifying the three fundamental issues with the case for library services to support well-being. our hope is that by unpacking the argument, we can place the academic library role on a much sounder, sustainable basis that facilitates genuine engagement with student well-being. defining well-being and evaluating the impacts of interventions in appropriate ways the first issue apparent from a close reading of the papers is that they fail to convincingly define the core concept of well-being that the activities they are organising are trying to address. one aspect of this is reflected in the terminology they employ. houghton ( ) talks about the events needing to be “fun”. brewerton and woolley ( ) use a number of terms that are poorly-defined and not interchangeable, including “stress” (a physiological response to an internal or external stressor) and “being happy” (a self-defined emotional reaction). furthermore, in reaching out for a theoretical justification for their activities they use a rather idiosyncratic reference point: maslow’s ( ) hierarchy of needs. a stock reference in the management literature, as they themselves point out, it is not one that this is widely referenced in the study of well-being. maslow’s ( ) hierarchy of needs is a theory of motivation (what makes humans act) rather than a theory of well-being, and drawing on it in this context appears to be an attempt to give scientific basis or credence to activity rather than a genuine underpinning principle for it. among their rather eclectic list of sources for understanding well-being, brewerton and woolley ( ) do also draw on a commonly used, perhaps even dominant paradigm of well-being, which has emerged in the uk as a justification for many such initiatives: the new economics foundation’s ( ) five ways to well-being (nef five ways). the nef five ways is often presented as an evidence-based, medically-informed conceptualisation of activities that people should undertake to maintain good well-being and it is often referred to as being endorsed by the nhs. the five recommendations it makes are that we need to keep active, connect with other people, take notice of the world around us, give (i.e. volunteer), and keep learning. in many ways, it is difficult to argue against the nef five ways; the recommendations it makes have a flavour of ‘motherhood and apple pie’, a conceptualisation that no one could disagree with could never do harm. however, the evidence behind the nef five ways is in fact limited, drawing on grey literature rather than peer-reviewed journal papers and reinforces a particular agenda: that of the individualistic account of well-being as something that is led by and in the control of the individual without reference to social structures (rose, , shaw and taplin, ). this widespread adoption of a simplistic conceptualisation of what well-being is can be seen to be problematic for a number of reasons. first, it ignores social structures and power relationships in favour of what scholars such as cieslik ( ) would regard as superficial tips that do not encourage well-being in any profound sense. second, it places the onus on the individual and so reinforces social structures that are problematic by inhibiting social collaboration and action (rose, ). third, it constructs well-being as ‘a problem about which something can and ought to be done’ (baachi quoted in shaw, ). finally, it is used to semi-pathologise poor well-being and to conflate issues of poor well-being and poor mental health. the provision of services that are seen to improve well-being (within this conceptualisation of the term) is replacing a need to provide good quality and evidence-based mental health care services. thus brewerton and woolley’s ( ) use of the nef five ways could be said to reflect wider issues employing hazy conceptualisation of well-being. the idea of ‘living well’ is something that is much debated and little agreed on (dodge, ). rather than something that is easy to define, it is an issue that humans have considered for centuries from a variety of theoretical and disciplinary perspectives (nussbaum, ). there is a need for a well-considered definition of the concept, linked to an evidence base of what affects well-being and exploration of measures of impact. however, practitioner papers focus on looking for ‘quick fixes’ for well-being rather, for example, than helping students to identify and live by deeply-held values. though these issues of definition may be dismissed as not important to the overall agenda of well-being related activity, it leads to a superficial construction of the problem which affects evaluation of the effectiveness of any interventions. similar critiques have been made around the evaluation of well-being in arts interventions (oman and taylor, ). thus, for example, brewerton and woolley ( ) evaluate one of the activities they organise, pet therapy, thus: “it is great to watch students go from stressful to successful with the help of our furry friends.” as if it were merely a matter of petting a dog to gain an immediate impact on mental health and assuming that well-being were simply to be linked to student success. houghton ( ) assumes that because its popular seeing an owl improves well-being. in fact, examining the literature on pet therapy and the impact on mental health suggests that the available evidence is incomplete, and little research has examined the role of pets as therapy in the university context (ward-griffin et al, , wood et al, ). there is certainly some evidence that living with a dog has benefits that might be associated with good well-being, including physical benefits such as regular exercise (friedmann and son, ). these studies are not considered to be conclusive proof of cause-and-effect, but identity some association. however, living with a companion animal and interacting regularly with them is not the same as having infrequent access to a dog for a short period of time. the extrapolation from the wider evidence base to the university context also causes some cause for concern as it may not correctly be identifying what it is about having access to a pet that has an impact on good well-being. several more recent studies have examined interventions that specifically bring in therapy animals to a university space. they conclude that any effect on well-being is short-lived; ‘the therapy dog sessions did not have a lasting effect on happiness, positive affect, or life satisfaction, suggesting that the effects are somewhat selective’ (ward-griffin et al, ). the claims made by the authors of collection of papers about the role of well-being activities in the academic library are diverse, but broadly state that it will reduce stress for students, and lead to greater academic success. evidence produced to support these claims is lacking. statistics on student stress levels, or impacts on academic achievement are not presented. houghton ( ) candidly admits that no formal evidence of attendance, let alone impact was gathered for the events at middlesex. yet there are widely accepted measures of well-being, such as wemwbs. there is potential to measure the impact of interventions by the library on well-being. a complication, however, is that even if these data were available, it would still not be easy to establish causality between the well-being related activities in the library and student well-being or an increased level of achievement. demonstrating an effect in a way that might be acceptable in a medical context is probably impossible, for example. the ultimate issue for academic libraries is that the way in which evidence is constructed in medicine is not available to access, or appropriate, for complex interventions such as these. this poses a continuing problem for any initiative around well-being in terms of credibility. we would suggest following the model proposed by cieslik ( ) of exploring people’s own narratives of well-being as evidence. in the absence of any very clear definition or substantial evidence for impact on well-being, houghton ( ) emphasize the effectiveness of the owl as a symbol for the media campaign to attract attention. similarly, the “effective campaign” for smith ( ) is to advertise the events rather than evidence of its actual impact. brewerton and woolley ( ) also seem to measure success by the response in social media, as if this were merely a marketing campaign. they focus much attention on a penguin mascot used to coordinate their message. the same impression is conveyed by the pictures used to illustrate the article. these include images of students giving a thumbs up and holding a banana in their mouths to look like smiles. the activities seem to be evaluated more as if they were a library promotion campaign rather than one addressing well-being; ‘good pr for a caring university!’ these pictures in the paper seem to reflect performing well-being rather than encouraging genuine well-being. indeed, the whole playful style of the paper could be seen as performing a sort of glibly happy tone, one that is potentially at odds with a serious minded response to issues of well-being. identifying the true nature of the problem thus fundamentally there is no coherent notion of well-being underlying the activities described in these papers and correspondingly the ways success are measured are superficial. a related issue is a failure to fully understand the nature of the problem around well-being. as context for the library activities for student well-being, brewerton and woolley ( ) refer to evidence of a rising level of mental health problems among students, as reported in a universities uk (uuk) guide (universities uk, ). smith updates this referring to a ministerial directive from . however, when we analyse the activities that the libraries organise to tackle this shift, they seem largely to be addressing familiar, long-standing issues such as examination stress. what the articles do not do is ground any activity in an understanding of why there is an increasing sense of a problem around well-being and mental health in society and in universities in particular. clearly a failure to identify the true nature of the problem will mean that attempts at a solution are potentially misdirected. thus it is essential in responding to any “crisis” around student well-being to give consideration to why this crisis being identified and what are seen as the underlying causes. we would argue that such an analysis should recognise fundamental societal factors as creating the problem (baik, et al. ). young people’s lives are increasingly pressurised and precarious: the job market is uncertain, access to home ownership more restricted. political uncertainty, such as around brexit, seems to be linked to feelings of depression. meanwhile, climate change and global population growth all create long term uncertainties. these society level troubles should be recognised for what they are. ultimately these are stresses that need to be addressed at a social level by governments. however, often the well-being agenda is being used to deflect attention away from such structures. the “problem” of well-being is often being framed through discourses of “neo- liberalisation” where, rather than acknowledge that there could be structural reasons for why students’ well-being is under pressure, typically social responsibility for their welfare is displaced onto individuals themselves. the issue is misidentified as an individual rather than a social one (cieslik, ; deverteuil and golubchikov, ). thus many arguments around well-being bear the classic hallmarks of neo-liberalism. for example, layard ( ) has suggested that we can improve the economic outcomes of the country by improving well-being. this has been very influential as a neoliberal argument for why governments should care about well-being. layard’s ( ) work reinforces two interlinked ideologies; first that having good well-being means we are productive, and second that to have good well-being we need to be productive. one example of how the articulation of values has shifted can be seen in the use of the employability agenda in universities (stoten, ). the drive towards productivity and employability as a focus for university rather than education and a spirit of self-discovery means that the focus of university education has changed, and in some ways relationships between universities and students have been damaged. the marketisation of higher education positions the student as consumer and individual rather than social learner. instead of questioning the shift in discourse away from education and towards productivity that creates a potentially toxic, more competitive environment, academic libraries are effectively supporting the new institutional culture by providing activities that aim to improve well-being (as conceptualised as an individual problem) rather than questioning why well-being is poor. in contrast, we would argue, the focus should be on the structures: the precarity of unemployment, under-employment, expectations of productivity and wealth, and expense and scarcity of housing, geopolitical issues and climate change and so forth. furthermore, all the five authors discussed here present their discussion of improving well-being as an aspect of student support, with no mention of university staff well-being. when correctly understood the issues of student well-being are tied closely to those of staff (morrish, ). gill ( ) has argued that anxiety among academics is being created by precarity: temporary contracts, increased metrics on performance and the collapse of the divide between home life and work. again, she suggests that increasing stress and so the means to address it, is construed in terms of individuals’ ability to cope, rather than underlying structures that produce the problem. this is exactly the type of misrecognition that seems to be reproduced in these practitioner papers. recognising the nature of the problem properly and fully, logically affects the nature of the response. the logic would be that libraries should be reflecting on how their own practices and processes as a whole impact student (and staff) experience in the context of structural pressures on them, and less focus on developing some sort of additional well-being related service. the shift to addressing students as customers may be counter-productive in this context: for it is precisely market based relations that create a lack of well-being. a very simple example would be to consider how the system of late library book return fines impacts on students who may increasingly be concerned about money. again, thinking about the ux of libraries that create homely or calm places for study are highly relevant to promoting well-being, particularly if students are struggling with finding such spaces. taking this further would imply reconsidering all services, specifically in the light of structural pressures in student lives. an increasing interest in how libraries fit into the lives of different types of users and recognition of diversity in experience, is a promising direction for optimising their contribution in this context. if libraries need to reconsider how all their own practices might be implicated in a competitive ethos associated with neo-liberalisation, then they may be able to return to a focus on exploring learning for itself. fortunately, in many ways libraries already do implicitly resist competitive, individualising ideologies through core services, such as through their emphasis on access to knowledge supported by training in information and digital literacies. this can be critical to ensuring students experience learning in empowering ways. in this sense one could argue that effectively library services already contribute in a profound way to a notion of learning for itself that resists neo-liberal agendas; in so doing they address the issue of well-being. locating the problem and solutions within the lis professional knowledge base the failure to define well-being clearly, to measure impacts of interventions or to analyse the nature of the issue could all be seen as reflecting a lack of a sound basis for activity in well- being in the professional knowledge base: the third issue we identify as surfacing in the emerging professional literature in the uk. brewerton and woolley ( ) use two arguments for the appropriateness of library involvement in activities relating to student well-being, both with implications for professional identity that need to be carefully considered. firstly, they draw a link between their well-being related activities and the library strategy. the library strategy further aligns to the university strategy, and this aligns with uuk policy, they point out. so their argument posits that the services are justified because they align to wider circles of strategy. the first step in the chain of this argument is a little tenuous, because they try to tie well-being to the mission of the library of “connecting you with information, support and your community”. a more conventional understanding of the reference to support here would interpret this as referring to support for information activities related to study. on its own this does not seem a convincing basis for creating well-being-related services. both houghton ( ) and smith ( ) link their initiatives in a similar way to the integration of the library into institutional life. it is a little unclear what the library brings to the table in these collaborations that is distinctive. it becomes merely a host for wider initiatives. we also suggest that their argument of strategic positioning relies on a top-down a model of alignment. simply aligning to wider agendas in itself, without applying professional judgement to the purposes is a superficial approach. it would be a stronger case if the library would be seen to seeking to align in a way appropriate to its existing services; this does not seem to be the authors’ suggestion. instead, they are effectively reproducing managerialist discourses around alignment of activities to wider strategy. this can be construed as an anti-professional discourse, in which the autonomy of professions is seen as needing to be suborned to wider organisational needs, especially as it requires the library to do things that do not normally find a place in the library. the second way in which brewerton and woolley ( : ) seek to justify well-being related activities in the library is by assembling an argument that “libraries have the staff, relationships, skills, spaces and pedigree” to create services for student well-being. some parts of this argument indeed have a degree of plausibility. libraries are important places for study. librarians may often been quite well connected to refer or signpost students to relevant services (but the library is not normally the obvious place to seek different sorts of guidance). a particular style of argument the authors employ is to claim that well-being related activities are like something libraries have “always done”. there is a tenuous connection made between holding coffee mornings for researchers in the library to the history of the coffee house as a place to engage in information sharing and networking, seemingly echoing habermas’ ( ) notion of the public sphere. quite apart from the socially privileged nature of the coffee houses (brewer, ), the public sphere is about open debate and free information; it has no link to well-being as such. thus, there is a logical fallacy about making a connection as brewerton and woolley’s ( ) work does here. other examples of activity mentioned seem to relate to other university agendas such as internationalisation, rather than to well-being as such. fundamentally the authors trace a link between well-being activities and the role of “community outreach”, specifically to student support. but generally speaking we would think of community outreach as implying things like information, digital and academic literacy training. extending this concept to encompass well-being seems quite a leap. in making this leap the authors exploit the failure to define their terms and to elide mental health issues, well-being and student performance. furthermore, the idea that the library is a natural place for these activities involves a considerable idealisation of library relations with students. it is certainly true that students spend a lot of time at stressful parts of year in the library, as brewerton and woolley ( ) state. however, is the claim about students made in the following sentences really true? “they know the staff. they know we are looking out for them. if we notice they are stressed and talk to them about looking after themselves, this feels natural...they tell us things they wouldn’t tell their tutors. they don’t feel they have to put on a ‘front’ with us. ” (p. ) in the context of mass institutions with increased student numbers and trends towards self- service and disintermediated services, this seems an inflated claim. thus the attempt to present work about well-being as a natural role for the library seems tenuous. the form of the argument the authors use links to a very common issue in the library literature and in library practice: how to define the purpose of the library and the library profession in the context of digital and other potential threats to understanding of the value of libraries. the library literature has a preoccupation with librarian identity and library futures. there appears to be a constant need to define and usually reinvent the role of the library. certainly there is a case for this work since there is no doubt that the traditional “jurisdiction” of the profession, linked to a role in collection needs revision (abbott, ). many librarians feels frustrated by the continuing identification of their job with the book collection. given the prominence of well-being in current agendas, it is natural that libraries would consider latching on to it to demonstrate their value. however, there are fundamental problems with unconsidered expansion of the scope of any profession. walton ( , ) points to the risks to libraries of such “diversification.” at a more theoretical level, as abbott ( ) argues, a profession is a knowledge-based occupation. it claims jurisdiction over workplace tasks on the basis of its special knowledge of how to define and fix problems. but in the accounts of all these authors there is almost no attempt to draw on library theory to underpin a role in student well-being. this is apparent in the earlier points about a lack of a clear definition of well-being and reaching out in a muddled way to maslow’s ( ) work, in brewerton and woolley ( ). the authors are casting about to find a reference point, but find none in the professional librarianship literature. yet without some foundation in professional knowledge, the long term sustainability of any claim to involvement in work on student well-being seems implausible. without some expertise on what well-being means and how to address it, initiatives are unlikely to have great plausibility. indeed it may even become damaging because it further confuses what a library is and what being a librarian means. there are two counter arguments that one could make against our reasoning at this point. one counter argument would be to reflect on the trend towards integration or “collaboration” with other student services that at its strongest in some institutions has led to the fusion of the library with other student-facing services in superconvergence (bulpitt, ; heseltine et al., ). in this context the desire to be contributing to student well-being seems more explicable because the library is reconceived as just one service point for all student-centred services. this is more or less, exactly what porritt ( ) argues about the case for well-being services at teesside: it is an opportunity to integrate the library with a new department of student and library services. this is not inconsistent with our argument about deprofessionalisation, since superconvergence is essentially a de-professionalising trend. for some this may even be welcomed, if one believes that a profession has to give ground to institutional needs. yet the problem remains in that without some substantive knowledge base behind an understanding of well-being it is hard to see how there can be a sustainable service of value in the library around well-being. even in a super-converged service there are more obvious service points where well-being could be addressed than the library. another counter argument against our point (that the problem with locating well-being in the library is that the profession has no expertise in this area) is to recognise that there is in fact a body of literature that does articulate the role of the library in well-being: namely bibliotherapy (mcnicol and brewster, ). it is surprising that bibliotherapy is not a more important reference point for the current work around well-being and the academic library. it is not mentioned in any of the articles considered here, though porritt’s ( ) paper does emphasise reading for leisure and reading groups. smith ( ) briefly mentions book chats. although there are some examples of schemes in academic libraries (see, for example, azadbakht and englert, ), bibliotherapy has historically been mostly practised in public and hospital libraries and few academic librarians have a firm knowledge of it. another reason that bibliotherapy may not have a central role in the academic library may be that it is founded on the notion of books and reading offer benefit to well-being. this could be seen as reinforcing received notions of what a library is and the associated image “problem.” for advocates of the diversification of the academic library this might be seen as regressive. yet bibliotherapy presents the most substantial development of thinking about well-being in the lis professional literature. current thinking in the bibliotherapy literature often draws on a “books on prescription” model, in which doctors are encouraged to prescribe books instead of/ in addition to medication or other therapies. a list of approved reading, which is usually cognitive behavioural therapy (cbt)-based literature, is then made available via the library. where bibliotherapy has been adopted in the academic library, this model has continued to dominate. while other models do exist, e.g. where creative works are recommended, these have not been widely taken up in the academic library as their adoption would involve a significant amount of financial and spatial resource. however, evidence suggests that having a broad collection with a range of fiction and non-fiction and giving readers the choice to select their own texts can improve well-being, since there is a lot of individual variation in what reading people find improves their well-being (brewster, ). thus we would argue that if libraries develop services related to well-being they must find ways to explain why this is relevant, clearly justified within the professional knowledge base. one route may be to locate it in the professional knowledge base developed in the bibliotherapy literature. this is rooted firmly in having part of the collection that is specifically cbt literature or to encourage reading for well-being. discussion the papers discussed here are engagingly written reflections on academic libraries’ vigorous response to the trend to develop services around student well-being. they are just a few examples of initiatives mirrored in many universities in the uk in the last couple of years, as well as in public libraries, archives and museums. we have chosen to analyse these papers in some depth, not particularly to single out these well-intentioned authors, but because their arguments seem to exhibit problems that occur across the sector in seeking to justify activities around well- being. our argument in this paper is not that libraries (archives and museums) do not contribute to well-being or that they could not do so more, but to identify three interrelated challenges that exist to developing successful services around well-being. firstly, there is a need to define clearly what well-being is. one convincing approach is to acknowledge the complexity of well- being and to ask questions about how people themselves experience it and how the library can play a role in it. in the context of responding to policy pressures, another approach is to follow attempts to measure effects on well-being, given policy makers investment in measures of well- being. without such evidence it is unlikely that such initiatives will be taken seriously by policy makers. secondly, and relatedly, there is a need to define the nature of the “crisis” around well- being. we would argue that this relates to deep-rooted structural issues and fundamental governmental decisions: it relates to issues around the future of youth, falling social mobility and increasing social expectations, combined with a long-term failure by governments to spend money on mental health services. it is strongly linked also to the well-being of staff in academic institutions, including in libraries. it is a misidentification to represent well-being as an individual problem. information professionals’ activities in this area should be directed to analysing and addressing underlying causes and reflecting on whether some aspects of library rules and processes themselves reproduce these effects. we should be wary of aligning to neo-liberal assumptions about the nature of well-being. the third, interlinked, challenge is that the failure to define well-being or analyse its causes echoes a lack of deep engagement with the topic in the literature of our field. most of the papers reflect a perceived need to align to institutional strategies, but this is not really grounded in the knowledge base of librarianship as a professionalised occupation. a sustainable response from the profession to the “crisis” in well- being needs to be rooted in the professional knowledge base. it is curious that the current wave of activity in academic libraries neglects to reference the ways some scholars of bibliotherapy have linked libraries to well-being and reading. it also reflects that very little theorising around academic libraries really has anything to say about well-being. to move into this area in ways not supported by its professional knowledge base has perils for a profession. it should be clear from what we have written that we are far from rejecting the idea of a role for the academic library in well-being. rather it is about reflecting on libraries’ role in higher education as a whole and where new initiatives are needed, locating them correctly: defining the concept and the nature of the underlying issues, measuring impact in ways that are convincing to policy makers and developing a very clear narrative of how this activity relates to the role of the library. conclusion this paper is an attempt to respond positively but critically to the current trend towards providing support to student well-being in the academic library. the purpose is to prompt a deeper engagement with the underlying concept. there is a need to engage with wider debates about the meaning of well-being, underlying causes of the current concerns and the growing evidence base on what works to improve well-being. one starting point is certainly the literature of bibliotherapy, which is strangely missing from the existing academic library debate. the debate has considerable implications for professional identity. it is one that is happening across our sector, touching archives, museums as well as libraries. there is a need for a systematic analysis of current initiatives and their rationale. from one perspective this would tell us about how academic libraries are evolving. on the other hand, it would need to be interpreted within much wider trends in academia and society about how cultural services are valued under neo-liberalisation. we may find that libraries already contribute in a profound way to well-being in the university through the kind of belonging that many students find in library spaces and in the notion of access to learning they inherently promote. references abbott, a. 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people with dementia: a review jacqueline perkins australasian centre on ageing, the university of queensland, brisbane, queensland, and centre for companion animal health, school of veterinary science, the university of queensland, brisbane, queensland, australia helen bartlett and catherine travers australasian centre on ageing, the university of queensland, brisbane, queensland, australia jacquie rand centre for companion animal health, school of veterinary science, the university of queensland, brisbane, queensland, australia this review summarises and critiques the published literature regarding dog therapy for older people with dementia living in residential aged care facilities. nine studies were identified for inclusion and although the methodological variability of studies makes it difficult to draw firm conclusions, research suggests that dog therapy is beneficial for people with dementia. the most frequently reported findings were an increase in social behaviour and a decrease in agitated behaviour during dog contact. improvement in social behaviour was found to be unrelated to the severity of dementia. various improvements on measures of global function were also reported. no study adopted a randomised controlled trial design and a number of potentially important factors were not controlled for, including halo effects of animals on caregivers that may bias caregivers’ responses when acting as proxies for their relatives or residents. the premorbid relationship with dogs may be an important variable influencing outcomes. key words: dementia, human-pet bonding, leisure activities, pets, residential facilities, therapeutics. introduction dementia is the greatest single contributor to burden of disease due to disability at older age in australia, and in an estimated australians aged years or older had dementia. the prevalence and incidence of dementia are predicted to increase over the next few decades and it is estimated that by , the number of people with dementia in australia will increase to . this will result in a substantial increase in the burden imposed by this disease in australia together with a sizeable increase in demand for dementia care [ ]. the care needs of people with dementia increase with progres- sion of the disease and in australia most people with advanced dementia live in residential aged care (rac) facilities [ ]. very frequently, behavioural and psychological symptoms (bpsd) such as wandering, agitation, aggression and noisiness accom- pany dementia [ ]. serious bpsd not only causes distress to the individual concerned and increases their risk of physical harm, but also negatively impacts upon the quality of life of carers and coresidents and leads to burnout in care staff [ – ]. as up to three-quarters of residents in rac facilities have either possible or probable dementia [ ], the management of symptoms is central to their care [ , ]. however, the range of activities suitable for people with dementia is limited due to the cognitive and communication impairments of dementia [ ], and the efficacy of currently available treatments is also limited. although a range of non- pharmacological approaches to treat bpsd have been trialled including music therapy, reminiscence therapy, aromatherapy, validation therapy, light therapy, multisensory stimulation and cognitive therapy, the effects are modest, at best [ – ]. to date, few randomised controlled trials (rcts) of non-pharmacological interventions have been conducted and further research is needed to develop more effective treatments for dementia. animal-assisted therapy has demonstrated some promise in increasing pro-social behaviour and reducing bpsd in people with dementia [ ]. it is relatively new, beginning in the s when boris levinson used pets in his psychotherapy practice [ , ]. early research in aged care facilities suggests that dog contact offers a range of benefits for older people including tactile comfort and companionship, as well as assisting social interaction. dog contact appears to facilitate a positive mental attitude, and appears to reduce the negative impact of living in a rac facility, generally. the non-verbal communications of dogs were reportedly more friendly, non-judgemental, and conducive to sociable behaviours than those of the best-intentioned staff members [ ]. it has been suggested that animals communicate better than humans with people with dementia who may have impaired language skills, because animals rely more on body language [ , , , ]. although most animal-assisted therapy involves the use of dogs [ ], the use of dog-assisted therapy for people with dementia has not been systematically investigated despite the enthusiastic although uncritical reports of the apparent benefits of the intervention. many questions also remain unanswered, for example: is dog-assisted therapy or activity effective for people with dementia? if so, how effective is it and what evidence is there? why is it effective and what is/are the underlying mechanism(s)? is dog therapy best understood from a human– animal bond perspective, or does a psychosocial perspective provide a better explanation? does the mode of providing dog contact make a difference to the outcome? correspondence to: dr jacqueline perkins, centre for companion animal health, school of veterinary science, university of queensland. email: j.perkins@uq.edu.au aja( )_ .fm page thursday, october , : pm p e r k i n s j , b a r t l e t t h , r a n d j e t a l . australasian journal on ageing, vol no december , – © the authors journal compilation © acota broadly, two methods have been used to provide dog contact: dog-assisted activity and dog-assisted therapy [ , ]. dog-assisted activity has been defined as unstructured, informal, without specific therapeutic goals or recording of outcomes, and conducted by someone without special skills or training and possibly using an uncertified animal. by contrast, dog-assisted therapy is described as structured, one-on-one or in small groups, conducted by suitably trained professionals with specifically certified animals, and requiring active participation with specific therapeutic goals and outcomes recorded [ ]. in order to compile an evidence base to begin addressing some of these questions, we reviewed the research literature for studies that examined dog contact as therapy for older people with dementia. although a review of the therapeutic effects of a range of animals for older people with dementia was published in [ ], an updated review with a specific focus on dog therapy was con- sidered warranted given the pressing need to identify and develop effective therapies for people with dementia. the focus was restricted to dog therapy as dogs are considered more suitable than some other animal species for visiting rac facilities as they tolerate novel environments without apparent stress [ , ]. method a literature search was conducted using the electronic data- bases: the web of science, psycinfo, ovid medline, cinahl, adt, web of knowledge, cochrane and pubmed for english language articles published between and . search terms included the following combinations of keywords: (animal- assisted therapy or human-animal bond or animal-assisted activity or pet therapy) and (dementia). studies were included if the focus of the research was interactions or outcomes of contact between older people (over years) with dementia and dogs. papers presenting viewpoints, editorials, case studies, opinions or reviews were not included. the reference lists of included studies were hand-searched to identify additional studies. results nine studies that met the inclusion criteria were found. no rcts of dog-assisted therapy were identified and no studies meeting the inclusion criteria were published prior to . all included studies were conducted in a residential aged care setting or adult day care centre. details of the included studies are provided in table . six studies were conducted in the usa, two in japan and one in australia with sample sizes that varied between four and participants. all studies included participants with a diagnosis of alzheimer’s disease (ad) or dementia as documented in the resident’s chart. the severity of dementia ranged from mild to severe, although severity was not reported in two studies [ , ]. one study independently verified the diagnosis of dementia [ ] while another specified a mini mental state examination (mmse) score of or less in addition to the dementia diagnosis [ ]. additional inclusion criteria, such as the presence of chal- lenging behaviours and the existence of a prior positive rela- tionship with animals, were used in several studies [ , , ]. the interventions trialled and outcome measures used varied considerably across studies. measures used included medication use, ward noise levels, measures of cognition, global function and behaviour. a range of benefits of dog-assisted therapy or activity were reported including improvements in social behaviour, agitation, apathy and other problematic behaviours. of the five studies that examined pro-social behaviour, all reported significant increases in a range of social behaviours such as smiles, looks, verbalisations and touches during the inter- vention phase, as measured by direct observation [ , , – ]. three of these studies additionally measured agitation reporting significant reductions [ , , ]. a significant reduction in a range of global problem behaviours measured by proxy report on all six subscales of the nursing home behaviour problem scale (nhbps) was also reported in subjects following the introduction of a resident dog in one rac facility [ ]. the improvement in behaviour was apparent during the day shift, but not during the evening shift. several studies evaluated the effectiveness of dog contact using a range of physiological measures including blood pressure, diastolic blood pressure, heart rate, skin temperature and cga (an antibody found in saliva thought to be an indicator of stress). walsh [ ] reported a significant decrease in the average heart rate (but not blood pressure) of participants in the treatment group from pre- to post-intervention. they also reported a significant reduction in ward noise levels in the treatment ward compared to the control ward due to a decrease in loud spontaneous vocalisations and aggressive verbal outbursts in the treated group. the effects, however, were short lived with levels reverting to baseline within minutes of the dog and handler departing the ward. by comparison, another study that measured heart rate, blood pressure and skin temperature of patients during dog contact did not find a significant difference on any of these measures using a within-subjects design [ ]. the majority of studies employed a test–retest design while two studies non-randomly allocated participants to experimental and control groups [ , ]. of those, one allocated subjects to groups on the basis of liking animals ( n = ) with others allocated to the control group ( n = ) [ ]. in walsh’s study six participants were matched with seven control subjects in a separate ward within the same facility [ ]. two studies employed dog-assisted therapy [ , ] with visiting dog/s used in a semistructured program, while seven used dog-assisted activity with the mode of dog contact being either resident or visitation. two studies investigated the effects of resident dogs: mccabe introduced a resident dog for weeks into a special care unit with residents [ ], while kongable observed residents during dog-assisted activity for hours once per week for weeks, after which the dog became resident [ ]. discussion the limited research that has been undertaken provides some evidence that dog contact is beneficial for older people with aja( )_ .fm page thursday, october , : pm d o g t h e r a p y f o r p e o p l e w i t h d e m e n t i a australasian journal on ageing, vol n o d ecem ber , – © the authors journal com pilation © ac o ta table : summary of studies of dog-assisted therapy/activity in older people with dementia first author and year n setting country dog contact prior in facility participant criteria participant’s age (mean, sd) resident or visiting dog measures used findings sellers [ ] residential care usa yes moderate to severe dementia (any), likes animals, agitated behaviour , , , visiting • mmse abmi [ , ] • social behaviour observation checklist (sboc) [ ] incidence of observed agitated behaviour during aat was reduced (abmi); incidence of observed social behaviour during aat increased (sboc) motomura [ ] residential care japan nm female mild dementia dat vad ( . ± ) visiting • mmse, apathy and irritability scale [ ] • gds [ ] • psms [ ] staff-assessed reduced global apathy in aaa group (apathy subscale) richeson [ ] scu usa nm moderate to severe dementia (any) with agitated behaviour; prior pet ownership – ( . ) visiting • mmse cmai [ , ] • as required meds • social behaviour (aat flow sheet) incidence of observed social behaviour during aat increased (aat flow sheet); staff-assessed global agitated behaviour decreased in aat group (cmai); improvements unrelated to severity of dementia (mmse) kanamori [ ] psychiatric hospital day care program japan yes (treatment group at home) moderate dementia; likes animals ( . ) visiting dog /s and cat /s • mmse n-adl [ ] • behav-ad [ ] • salivary cga [ ] family assessed global care giving burden reduced in aaa group (behav-ad); non-significant reduction of cga in aaa group mccabe [ ] special residential care usa yes dementia ad or related – ( . ) resident • medication use • nhbps [ ] staff-assessed reduction in global problem behaviour (nhbps on all six subscales) after aaa (intro resident dog) during daytime shift only churchill [ ] psychiatric hospital scu usa nm mild to moderate dementia (ad or related), agitated behaviour in evening, no negative dog experiences ( . ± . ) visiting • bdrs [ ] • abmi • meds • social behaviour increase in duration and frequency of social behaviour (social behaviour) and decrease in agitated behaviour (abmi) during aaa in early evening; improvements unrelated to level of dementia (bdrs) batson [ ] special residential care usa nm severe dementia (probable ad); no negative dog contact or significant sensory impairments – ( . ) visiting • bdrs • social behaviours • bp, hr, skin • temperature increase in duration and frequency of social behaviour (social behaviour) during aaa; improvements (except praise) unrelated to severity of dementia (bdrs) walsh [ ] psycho-geriatric hospital scu australia nm severe dementia (any) and difficult to manage over visiting • lprs [ ] • bcabs [ ] • dbp, hr, dba reduced hr and ambient ward noise levels (dba) in aaa group kongable [ ] veterans home scu usa nm dementia (ad); prior pet owner – visiting; resident • pro-social behaviours (smiles, leans, looks, laughs, touches, verbalisations, name-calling, others) increase in incidence of pro-social behaviour (pro-social behaviour); equal improvements for both resident and visiting dog mode aaa, animal-assisted activity program; aat, animal-assisted therapy program [ ]; abmi, agitated behaviour mapping instrument; behave-ad, behaviour of patients with alzheimer’s disease; bdrs, bourke dementia rating scale; bcabs, brighton clinic adaptive behaviour scale; bp, blood pressure; cmai, cohen–mansfield agitation inventory; cga, a salivary antibody; dat, dementia of the alzheimer’s type; vad, vascular dementia; dbp, diastolic blood pressure; dba, decibels; gds, geriatric depression scale; hr, heart rate; lprs, london psycho-geriatric rating scale; mmse, mini mental state examination; nhbprs, nursing home behaviour problem rating scale; nm, not mentioned; psms, physical self-maintenance scale; scu, special care unit. aja( )_ .fm p age t hursday, o ctober , : p m p e r k i n s j , b a r t l e t t h , r a n d j e t a l . australasian journal on ageing, vol no december , – © the authors journal compilation © acota dementia, with an increase in pro-social behaviour and a decrease in agitated behaviour the most frequently reported finding. the results, however, are modest and appear to be short-lived. variability between the studies in participant numbers, recruitment and allocation procedure makes it difficult to compare studies and draw firm conclusions on issues such as: which subjects might benefit the most from dog therapy; what is the optimal duration of the intervention; and the extent to which the effects of the intervention generalise beyond the intervention phase. while short-term benefits are important as palliative measures, before any intervention can be justifiably implemented, it is necessary to know whether the results justify the time, cost and effort required. this review highlights a number of key issues for consideration in planning dog-assisted therapy for future research. type of program and dog details one issue relates to the mode of providing dog contact and it is unclear from the published research whether dog contact provided on a permanent basis by a resident dog is more effec- tive than that provided intermittently as in the case of a visiting dog. the one study that compared the effects of both modalities reported equally positive results for both interventions [ ]. it is also difficult to draw conclusions regarding the optimal amount of dog visitation for older people with dementia as sessions differed in length, frequency and duration and were provided in different areas within facilities. where visitation was used, interventions ranged from hours of informal individual visitation twice per week over weeks [ ], to one individual -minute session in a common area with the subject wearing physiological monitoring equipment [ ], to -hour days per week in a structured small group in a common area over weeks [ ]. a second issue concerns the lack of evidence-based session plans and lack of detail in the reported studies regarding the therapy dog(s) used. only richeson and sellers [ , ] reported the use of session plans although these were not evidence-based and dog details were incomplete. for all studies reviewed, important details about the dogs used were not reported although such detail is necessary for replication. these include the dog’s sex, neutering status, age, breed /type, colour, background, training, certifications, temperament, health and behaviour record. session plans should be specific and evidence-based for each species used in an aged care setting and consider the specific requirements of the dog(s) used. a protocol should address the welfare needs of each species that differ in terms of social, environmental, and physical dimensions [ ] as well as the therapeutic or recreational goals of the individuals involved and the facility. it is unclear that the welfare needs of a resident dog can be satisfied [ ]. the ability of a facility to support any animal-assisted therapy or activity in terms of suitable space and staffing levels also requires consideration. individual and environmental factors of the nine studies reviewed, only two included a separate control group [ , ], but these two studies failed to control for a number of potentially confounding variables. the use of behaviour-modifying medication, commonly used in the target population, was not reported, and it is not known whether the use of such medication was equivalent in the intervention and control groups. anticholinesterase inhibitors and antidepressants might enhance responses to psychosocial interventions and hence psychotropic medications that are prescribed to influence behaviour and responses [ , ] need to be controlled for when evaluating intervention outcomes. although participants in the intervention and control groups were matched on a number of dimensions including sex, diag- nosis and medication usage in walsh’s study, and participants in both groups were reportedly difficult to manage, it is not clear whether the two groups were equally matched on this variable. it also appears that participants were not matched with regard to cognitive status or physical comorbidities at baseline as this was not reported. furthermore, groups were allocated across wards, hence participants were not subjected to the same background environmental influences [ ]. while this is convenient for delivery of the therapy, results may be confounded by the real day-to-day differences between facilities including the presence of different staff and any secondary influence the introduction of pets may have on staff. another potential confound may be the pre-existing level of activity or recreational programming within a facility at the time dog therapy is introduced. facilities differ in terms of the type and degree of diversional activity offered and this factor may influence outcomes although this variable was not reported nor controlled for in any of the reviewed studies. there may be an optimal level of activity for people with dementia and the introduction of dog therapy into a facility that offers a rich recreational therapy program may make little measurable difference to the quality of life and well-being of residents. alternatively, the introduction of dog therapy in a setting that offers few activities may have a larger impact. without such information, it is difficult to conclude to what extent dog therapy is effective and it may be that the introduction of any novel activity may have achieved a comparable result. an additional confound is the presence of a therapist or human handler that accompanied the dog during visitation. this raises the possibility that the reported results may be due to increased attention of another person and not the dog per se. this can only be adequately tested by conducting a rigorously designed rct where the therapist alone acts as the control condition. finally, attendance at sessions was not reported by any study that provided multiple sessions of dog contact. thus, it is not known how much dog contact participants actually received. impact of residents’ prior relationship with dogs six reviewed studies used previous relationships with animals to recruit or allocate subjects to groups, yet details of the method and questions were not reported or validated by any study [ , , , – ]. the allocation of participants to an experimental group on the basis of liking dogs while allocating aja( )_ .fm page thursday, october , : pm d o g t h e r a p y f o r p e o p l e w i t h d e m e n t i a australasian journal on ageing, vol no december , – © the authors journal compilation © acota participants to a control group if they disliked or feared dogs, perhaps due to trauma, clearly introduces a source of bias. hence, this is an important variable to control for and the best way to do this may be to include people who like dogs in both experimental and control groups. people with previous strong positive relationships with dogs may have an experience best understood in terms of a human– animal bonding theory such as attachment, social support or role theory [ ]. they might benefit specifically from regular dog contact delivered in a therapeutic manner (as opposed to activity) in a small group setting over a longer timeframe to allow time for attachment to develop, and in a more structured manner to encourage participation in the small group process. human–animal bond theory may assist in understanding the mechanisms underlying dog-assisted therapy/activity, outcomes, construction of suitable session plans, a protocol for each species with emphasis on animal welfare, and participant selection. measurement issues the majority of accepted and validated psychometric instru- ments in use for people with dementia are completed by proxy, whereby caregivers or relatives provide information or answer questions about or on behalf of the person with dementia [ ]. third party reporting adds another layer of interpretation, and questionnaires and instruments that rely on this method in the context of animal-assisted therapy may be subject to positive bias of at least two kinds. the first may be improved morale and positive effects of pets on staff and caregivers [ , , , ], while the second may be improved perceptions about people (the participants) in the company of pets [ , ]. of the nine studies reviewed, only one used self-report outcome measures [ ] and no study was designed to deal with the potentially confounding effects of pet exposure on caregivers. hence, effects on staff and caregivers are of particular concern when proxy reports are used to evaluate the effects of animal contact. the limited use of self-report outcome measures in the reviewed studies may be due to a lack of such instruments for use with people who have dementia. this review identified no self-report instruments designed to measure outcomes of animal contact, despite evidence that people with mild to moderate levels of dementia are reliably capable of completing some self-report instruments, and clearly able to express preferences [ , – ]. the study by motomura [ ] was the only study to use self-report instruments (geriatric depression scale (gds) and physical self-maintenance scale (psms)), though these are general instru- ments and not designed specifically to measure outcomes of animal contact. the study failed to find any significant outcomes or trends on the gds or psms, though the sample size may have been too small ( n = ) to detect an effect. the belief that self- report psychometric instruments are not appropriate may have limited the development of these measures for this population. conclusion dog therapy shows some promise for managing bpsd in people with dementia of various stages. however, a well- constructed rct of dog-assisted therapy and activity is required to address the question of whether dog-assisted therapy or activity is effective for people with dementia, and if it is effec- tive, to what degree and why. this question has not yet been adequately answered due to methodological shortcomings of previous studies that include the specific biases of pet contact together with the use of proxy report for measuring outcomes, and the lack of implementation of a standardised protocol for dog-assisted therapy and activity across studies. further development of specific psychometric instruments is needed for use with people with dementia to measure the effects of dog contact, inform outcomes and to better understand the theoretical basis for dog-assisted therapy and activity. acknowledgements this research was fully funded by the j.o. & j.r. wicking trust. the authors would like to acknowledge their generous support. key points • the methodological variability of the studies makes it difficult to draw firm conclusions about the efficacy of dog contact. • research suggests that dog contact ameliorates bpsd in people with 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/sve <feff e e e e e e c c e e e e e c c b d f b d e d f c c f e e f b f b c e d f b d e e b e f e d f f e c c e e e e c c e e b e e b c e b e e e> /enu <feff e f f d e d f c f e f c d e e e f d e e f e f e e e c e e f e d e e> >> >> setdistillerparams << /hwresolution [ ] /pagesize [ . . ] >> setpagedevice training in integrative therapies increases self-efficacy in providing nondrug therapies and self-confidence in offering compassionate care | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / corpus id: training in integrative therapies increases self-efficacy in providing nondrug therapies and self-confidence in offering compassionate care @article{kemper trainingii, title={training in integrative therapies increases self-efficacy in providing nondrug therapies and self-confidence in offering compassionate care}, author={k. kemper and e. hill}, journal={journal of evidence-based complementary & alternative medicine}, year={ }, volume={ }, pages={ - } } 	k. kemper, e. hill 	published 	medicine 	journal of evidence-based complementary & alternative medicine background. patient demand and clinician interest have driven professional training in integrative therapies, but few rigorous evaluations have been published. methods. this project evaluated the proof of concept of training in acupressure, guided imagery, massage, and reiki on clinicians’ sense of self-efficacy in providing nondrug therapies, self-confidence in providing compassionate care, and engagement with work. results. three out of topics met minimum enrollment numbers; of … expand view on sage journals.sagepub.com save to library create alert cite launch research feed share this paper citationsbackground citations methods citations view all tables and topics from this paper 	 table 	 table 	 table 	self efficacy 	therapeutic procedure 	guided imagery 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alert research feed ... ... related papers 	abstract 	tables and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue opioids, adjuvants, and interventional options for pain management of symptomatic metastases. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /j.issn. - . . . corpus id: opioids, adjuvants, and interventional options for pain management of symptomatic metastases. @article{ghosh opioidsaa, title={opioids, adjuvants, and interventional options for pain management of symptomatic metastases.}, author={a. ghosh and ann berger}, journal={annals of palliative medicine}, year={ }, volume={ }, pages={ - } } 	a. ghosh, ann berger 	published 	medicine 	annals of palliative medicine cancer pain is a complex issue that unfortunately affects a majority of cancer patients, the assessment and treatment of which are equally essential in alleviating many facets of this pain. the objective of this section is to address the many facets of cancer pain: its assessment, management, and its varied treatment modalities. we will discuss characteristics of pain, essential aspects of the patient interview, and management using opioids, adjuvants, and interventional and invasive strategies… expand view on pubmed doi.org save to library create alert cite 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organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue using co-production to increase activity in acute stroke units: the create mixed-methods study journals library doi . /hsdr using co-production to increase activity in acute stroke units: the create mixed-methods study fiona jones, karolina gombert-waldron, stephanie honey, geoffrey cloud, ruth harris, alastair macdonald, chris mckevitt, glenn robert and david clarke health services and delivery research volume • issue • august issn - using co-production to increase activity in acute stroke units: the create mixed-methods study fiona jones , * karolina gombert-waldron , stephanie honey , geoffrey cloud , ruth harris , alastair macdonald , chris mckevitt , glenn robert and david clarke centre for health and social care research, faculty of health, social care and education, kingston university and st george’s, university of london, london, uk leeds institute of health sciences, university of leeds, leeds, uk alfred health, melbourne, vic, australia department of adult nursing, king’s college london, london, uk school of design, glasgow school of art, glasgow, uk school of population health and environmental sciences, faculty of life sciences and medicine, king’s college london, london, uk *corresponding author declared competing interests of authors: glenn robert reports that through the point of care foundation in london he has previously provided advice on and training in experience-based co-design. published august doi: . /hsdr this report should be referenced as follows: jones f, gombert-waldron k, honey s, cloud g, harris r, macdonald a, et al. using co-production to increase activity in acute stroke units: the create mixed-methods study. health serv deliv res ; ( ). https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - health services and delivery research issn - (print) issn - (online) this journal is a member of and subscribes to the principles of the committee on publication ethics (cope) (www.publicationethics.org/). editorial contact: journals.library@nihr.ac.uk the full hs&dr archive is freely available to view online at www.journalslibrary.nihr.ac.uk/hsdr. print-on-demand copies can be purchased from the report pages of the nihr journals library website: www.journalslibrary.nihr.ac.uk criteria for inclusion in the health services and delivery research journal reports are published in health services and delivery research (hs&dr) if ( ) they have resulted from work for the hs&dr programme, and ( ) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. hs&dr programme the hs&dr programme funds research to produce evidence to impact on the quality, accessibility and organisation of health and social care services. this includes evaluations of how the nhs and social care might improve delivery of services. for more information about the hs&dr programme please visit the website at https://www.nihr.ac.uk/explore-nihr/funding-programmes/ health-services-and-delivery-research.htm this report the research reported in this issue of the journal was funded by the hs&dr programme or one of its preceding programmes as project number / / . the contractual start date was in january . the final report began editorial review in may and was accepted for publication in december . the authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. the hs&dr editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. however, they do not accept liability for damages or losses arising from material published in this report. this report presents independent research funded by the national institute for health research (nihr). the views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the nhs, the nihr, netscc, the hs&dr programme or the department of health and social care. if there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the nhs, the nihr, netscc, the hs&dr programme or the department of health and social care. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. published by the nihr journals library (www.journalslibrary.nihr.ac.uk), produced by prepress projects ltd, perth, scotland (www.prepress-projects.co.uk). https://www.nihr.ac.uk/explore-nihr/funding-programmes/health-services-and-delivery-research.htm https://www.nihr.ac.uk/explore-nihr/funding-programmes/health-services-and-delivery-research.htm editor-in-chief of health services and delivery research and nihr journals library professor ken stein professor of public health, university of exeter medical school, uk nihr journals library editors professor john powell chair of hta and eme editorial board and editor-in-chief of hta and eme journals. consultant clinical adviser, national institute for health and care excellence (nice), uk, and senior clinical professor andrée le may professor matthias beck dr tessa crilly dr eugenia cronin senior scientific advisor, wessex institute, uk dr peter davidson ms tara lamont dr catriona mcdaid professor william mcguire professor geoffrey meads professor of wellbeing research, university of winchester, uk professor john norrie chair in medical statistics, university of edinburgh, uk professor james raftery dr rob riemsma professor helen roberts professor jonathan ross professor helen snooks professor of health services research, institute of life science, college of medicine, swansea university, uk professor ken stein professor of public health, university of exeter medical school, uk professor jim thornton professor martin underwood please visit the website for a list of editors: editorial contact: nihr journals library www.journalslibrary.nihr.ac.uk abstract using co-production to increase activity in acute stroke units: the create mixed-methods study fiona jones , * karolina gombert-waldron , stephanie honey , geoffrey cloud , ruth harris , alastair macdonald , chris mckevitt , glenn robert and david clarke centre for health and social care research, faculty of health, social care and education, kingston university and st george’s, university of london, london, uk leeds institute of health sciences, university of leeds, leeds, uk alfred health, melbourne, vic, australia department of adult nursing, king’s college london, london, uk school of design, glasgow school of art, glasgow, uk school of population health and environmental sciences, faculty of life sciences and medicine, king’s college london, london, uk *corresponding author f.jones@sgul.kingston.ac.uk background: stroke is the most common neurological disability in the uk. any activity contributes to recovery, but stroke patients can be inactive for > % of their waking hours. this problem remains, despite organisational changes and targeted interventions. a new approach to addressing post-stroke inactivity is needed. experience-based co-design has successfully initiated improvements for patients and staff in other acute settings. experience-based co-design uses observational fieldwork and filmed narratives with patients to trigger different conversations and interactions between patients and staff to improve health-care services. objectives: to complete a rapid evidence synthesis of the efficacy and effectiveness of co-production as an approach to quality improvement in acute health-care settings; to evaluate the feasibility and impact of patients, carers and staff co-producing and implementing interventions to increase supervised and independent therapeutic patient activity in acute stroke units; and to understand the experience of participating in experience-based co-design and whether or not interventions developed and implemented in two units could transfer to two additional units using an accelerated experience-based co-design cycle. design: a mixed-methods case comparison using interviews, observations, behavioural mapping and self-report surveys (patient-reported outcome measure/patient-reported experience measure) pre and post implementation of experience-based co-design cycles, and a process evaluation informed by normalisation process theory. setting: the setting was two stroke units (acute and rehabilitation) in london and two in yorkshire. participants: in total, staff, stroke patients and carers took part. findings: the rapid evidence synthesis showed a lack of rigorous evaluation of co-produced interventions in acute health care, and the need for a robust critique of co-production approaches. interviews and observations ( hours) identified that it was feasible to co-produce and implement interventions to increase activity in priority areas including ‘space’ (environment), ‘activity’ and, to a lesser extent, ‘communication’. patients and families reported benefits from participating in co-design and perceived that they were equal and valued members. staff perceived that experience-based doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. v https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - co-design provided a positive experience, was a valuable improvement approach and led to increased activity opportunities. observations and interviews confirmed the use of new social spaces and increased activity opportunities. however, staff interactions remained largely task focused, with limited focus on enabling patient activity. behavioural mapping indicated a mixed pattern of activity pre and post implementation of co-designed changes. patient-reported outcome measure/patient- reported experience measure response rates were low, at – %; pre- and post-experience-based co-design cohorts reported dependency, emotional and social limitations consistent with national statistics. post-experience-based co-design patient-reported experience measure data indicated that more respondents reported that they had ‘enough things to do in their free time’. the use of experience-based co-design – full and accelerated – legitimised and supported co-production activity. staff, patients and families played a pivotal role in intervention co-design. all participants recognised that increased activity should be embedded in everyday routines and in work on stroke units. limitations: communication by staff that enabled patient activity was challenging to initiate and sustain. conclusions: it was feasible to implement experience-based co-design in stroke units. this resulted in some positive changes in unit environments and increased activity opportunities for patients. there was no discernible difference in experiences or outcomes between full and accelerated experience-based co-design. future work should consider multiple ways to embed increased patient activity into everyday routines in stroke units. funding: this project was funded by the national institute for health research (nihr) health services and delivery research programme and will be published in full in health services and delivery research; vol. , no. . see the nihr journals library website for further project information. abstract nihr journals library www.journalslibrary.nihr.ac.uk vi contents list of tables xi list of figures xiii list of boxes xv list of supplementary material xvii list of abbreviations xix plain english summary xxi scientific summary xxiii chapter background introduction and context stroke: the state of play stroke statistics: organisational issues and impact rehabilitation, recovery and persistent concerns improving patient experience: acute health care co-production experience-based co-design chapter methods: intervention development the intervention: full and accelerated experience-based co-design settings and sampling project governance and management steps of the process (full and accelerated experience-based co-design) stage : setting up the project stage : gathering staff experiences through observational fieldwork and in-depth interviews stage : gathering patient and carer experiences through observation and filmed narrative-based interviews stage : bringing staff, patients and carers together at separate and joint events stage : sustained co-design work in small groups formed around priorities stage : a celebration and review event break point ‘accelerated’ experience-based co-design sites and chapter methods: the evaluation design and conceptual framework screening prior considerations procedure and participants sampling and recruitment recruitment data collection methods doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. vii data analysis qualitative data analysis integration of data in the experience-based co-design evaluation and process evaluation quantitative data analysis process evaluation methods data sources for process evaluation ethics and consent project management and guidance approach to public and patient involvement chapter results: rapid evidence synthesis and co-design – priorities for change rapid evidence synthesis (objective ) co-design: priorities for change ideas that drove the changes chapter results: impact of changes impact of changes: qualitative findings – staff, patients and families space activities impact of changes: quantitative findings (behavioural mapping and patient-reported outcome measures/patient-reported experience measures) behavioural mapping within-site comparisons cross-site comparisons summary patient-reported experience measures and patient-reported outcome measures pre-implementation patient-reported experience measure data: summary of findings post-implementation patient-reported experience measure data: summary of findings patient-reported outcome measures commentary on patient-reported outcome measures implementation and engagement the ‘experience’ of taking part (staff, patients and families) process evaluation making sense of create and the experience-based co-design process (coherence and cognitive participation over time) making sense of the study and experience-based co-design in the wider stroke team (coherence and cognitive participation over time) raising awareness and engaging staff, patients and carers through researcher presence on units (coherence and cognitive participation) the influence of participation in experience-based co-design elements (coherence, cognitive participation and collective action) leadership, managerial authority and support (cognitive participation and collective action) experience-based co-design activity was welcomed but added to the workload of core group staff (cognitive participation, collective action and reflexive monitoring) did the reduced elements/accelerated approach impact on the implementation process (coherence, cognitive participation and collective action)? chapter conclusions comparison with other research interventions to promote increased activity on stroke units co-design approaches in acute health care contents nihr journals library www.journalslibrary.nihr.ac.uk viii strengths and limitations strengths limitations implications for health care the added value of using co-design to initiate change the ongoing challenge of (in)activity in stroke units costs and sustainability implications for research chapter dissemination acknowledgements references appendix sentinel stroke national audit programme key indicators and overview of sentinel stroke national audit programme organisational data appendix topic guide for patients and family members pre implementation appendix topic guide for interviews with members of staff pre implementation appendix topic guide for patients and family members post implementation appendix topic guide for members of staff post implementation appendix example ethnographic observations timetable appendix behavioural mapping protocol appendix rapid evidence synthesis appendix demographic information appendix patient-reported outcome measure data appendix patient-reported experience measure data appendix patient-reported experience measure data: feelings doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. ix list of tables table comparison of each unit table number of co-design groups held table timings of data collection and the methods used table constructs of npt table data sources used for process evaluation table pre- and post-intervention physical, cognitive and social activity/inactivity: site table pre- and post-intervention overall activity/inactivity: site table pre- and post-intervention physical, cognitive and social activity/inactivity: site table pre- and post-intervention overall activity/inactivity: site table pre- and post-intervention physical, cognitive and social activity/inactivity: site table pre- and post-intervention overall activity/inactivity: site table pre- and post-intervention physical, cognitive and social activity/inactivity: site table pre- and post-intervention overall activity/inactivity: site table pre-implementation response rate prom/prem table overview of ssnap organisational data doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xi list of figures figure full ebcd cycle used at sites and figure accelerated ebcd used at sites and figure data analysis for both the evaluation and the intervention (ebcd) figure equipment storage in corridors at site figure typical bed space and décor at site , described by patients and staff as cluttered and uninspiring figure day rooms at sites and , which tended to be used only as meeting rooms for staff figure day room at site , which was used for storing specialist chairs and wheelchairs figure a typical method used at site of conveying abbreviated clinical information written on whiteboards above beds figure one of the new colour schemes in a four-bedded bay at site figure new repurposed seating area at site figure new social space (day room) used for scheduled and unscheduled activities at site figure end of a corridor at site , previously used for storing chairs and hoists figure new space at site , now an area for patients and families to meet and socialise figure new mobile ipad stands used at the bedside at site figure new activities (art groups and therapy dogs) available at site figure the ebcd training event for staff from sites and figure staff event at site : thinking differently about activities for different patient groups and about how activity could occur in existing spaces figure joint event at site figure ideas captured at pre-meeting: staff at site figure mayoral visit to celebrate changes to ward at site doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xiii list of boxes box patient-reported experience measure items doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xv list of supplementary material report supplementary material training day agenda report supplementary material consent forms report supplementary material ethics approval letter report supplementary material newsletter example report supplementary material adapted prisma flow diagram and checklist for rapid evidence synthesis supplementary material can be found on the nihr journals library report page (https://doi.org/ . /hsdr ). supplementary material has been provided by the authors to support the report and any files provided at submission will have been seen by peer reviewers, but not extensively reviewed. any supplementary material provided at a later stage in the process may not have been peer reviewed. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xvii https://www.journalslibrary.nihr.ac.uk/publications/hsdr / - - -supp .docx https://www.journalslibrary.nihr.ac.uk/publications/hsdr / - - -supp .docx https://www.journalslibrary.nihr.ac.uk/publications/hsdr / - - -supp .docx https://www.journalslibrary.nihr.ac.uk/publications/hsdr / - - -supp .docx https://www.journalslibrary.nihr.ac.uk/publications/hsdr / - - -supp .docx https://www.journalslibrary.nihr.ac.uk/publications/hsdr / - - -supp .docx https://doi.org/ . /hsdr list of abbreviations adl activities of daily living create collaborative rehabilitation in acute stroke ebcd experience-based co-design eq- d euroqol- dimensions esoc european stroke organisation hsruk health services research uk nice national institute for health and care excellence nihr national institute for health research npt normalisation process theory ot occupational therapist prem patient-reported experience measure prisma preferred reporting items for systematic reviews and meta-analyses prom patient-reported outcome measure pt physiotherapist ssnap sentinel stroke national audit programme doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xix plain english summary stroke, a type of ‘brain attack’, is the most common form of neurological disability in the uk.receiving early specialist care, including rehabilitation, is important, but we know that patients on a stroke ward spend much of their time without anything to do. getting patients and their family members to tell their stories in filmed interviews can help trigger staff to think about improvements in how services are run and the experiences for patients. an approach called experience-based co-design (co-design), which has been used to improve quality in other health-care settings, uses patient films (trigger films) in a powerful way. we tested whether or not co-design could be used in stroke units, two in london and two in yorkshire, to improve patients’ activity opportunities. in the first two sites, we used a long process of co-design, which took months and involved undertaking observations of the stroke unit, carrying out interviews with staff, patients and families, creating a trigger film, holding events with staff and patient/families and coming together in a joint meeting to prioritise the improvements. after deciding the changes they wanted to make, staff, patients and families met in small groups and made changes to the environment and introduced activity opportunities and ideas about how staff could interact with patients. in the next two stroke units, we used the same trigger films and the co-design took less time, completing in months. the results showed that it was possible to make many changes that increased activity. spaces were made on the ward for patients to meet, activities with community and voluntary groups were introduced, and changes were made to the space around people’s beds to make it feel more homely. changes to encourage staff to communicate more with patients were harder to achieve. but, overall, staff, patients and families found taking part in experience-based co-design a positive experience. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xxi scientific summary background stroke is the most common form of neurological disability in the uk. depending on the severity of their stroke, survivors will spend anything from a few days to many months as an inpatient. rehabilitation is an essential component of multidisciplinary stroke care. the national clinical guideline for stroke (england, wales and northern ireland) [intercollegiate stroke working party. national clinical guideline for stroke. th edn. london: royal college of physicians; ] recommends that every day each patient should receive at least minutes of therapy, as appropriate. yet a focus on ‘delivery of therapy’, which is usually provided only on mondays to fridays, fails to recognise the need to make rehabilitation the basis of the patient’s day, as opposed to an infrequent part of it. any independent or supervised activity, whether physical, social or cognitive, helps recovery, but observational studies show that stroke patients can be inactive and alone for > % of waking hours. these figures have remained unchanged since the s, despite many organisational changes, guidelines and national targets. boredom and apathy are commonplace, and both can have a negative impact on patient outcomes. innovative approaches to addressing the longstanding problem of inactivity are now required. experience-based co-design has successfully initiated improvements for patients, staff and visitors in other acute settings. experience-based co-design draws on observational fieldwork and filmed narratives with patients to help trigger different conversations and interactions between patients and staff with the goal of improving health-care services. the approach entails equal roles for staff, patients and families in co-designing the changes they care most about. our aim was to evaluate the feasibility and impact of patients, carers and staff collaborating to develop and implement changes to increase supervised and independent therapeutic patient activity on acute stroke units. we focused on supervised or independent social, cognitive and physical activity and used an umbrella term of ‘activity’ for anything that patients do with or without help, however small, outside individual one-to-one scheduled therapy sessions. we also aimed to understand both the experience of taking part in experience-based co-design and whether or not the interventions developed and implemented during a full experience-based co-design cycle in an initial two units could be transferred to two further units using an accelerated experience-based co-design improvement cycle. the feasibility of an accelerated form of experience-based co-design was demonstrated in an earlier health services and delivery research study in intensive care units and lung cancer services, but there was no focus on the transferability of co-designed solutions and no evidence of use of accelerated experience-based co-design in stroke services. objectives our first objective was to complete a rapid evidence synthesis of the evidence on the efficacy and effectiveness of co-production as an approach to quality improvement in acute health-care settings. we then used full and accelerated cycles of experience-based co-design in four stroke units and studied the impact of the changes made on the quality and amount of activity. our evaluation focused on the following questions: l how do patients and carers experience the use of a co-production approach and what impact does it have on the quality and amount of supervised and independent therapeutic activity in a stroke unit? doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xxiii l how do staff from acute stroke units experience the use of a co-production approach and what improvements in supervised and independent therapeutic activities does the approach stimulate? l how feasible is it to adopt experience-based co-design as a form of co-production for improving the quality and intensity of rehabilitation in acute stroke units? l what role can patients and carers have in improving the implementation of the national clinical guidelines recommendations about the quality and intensity of rehabilitation in acute stroke units? l what are the factors and organisational processes that act as either barriers to or facilitators of successfully implementing, embedding and sustaining co-produced quality improvements in acute care settings, and how can these be addressed and enhanced? methods design the intervention was experience-based co-design used in four stroke units. stroke units at sites and undertook all six components of experience-based co-design with the aim of co-designing improvements that would have an impact on stroke patients’ physical, social and cognitive activity. at sites and we used an accelerated experience-based co-design cycle starting from a joint staff, patient and family member event to initiate co-design work prompted by trigger films previously developed at sites and . we used a mixed-methods case comparison approach to our evaluation using interviews, observations, behavioural mapping and self-report surveys (patient-reported outcome measures/patient-reported experience measures) pre and post implementation of experience-based co-design cycles. a thematic analysis of qualitative data was carried out, and findings pre and post implementation of improvements within and between sites were compared. we generated descriptive statistics from behavioural mapping and patient-reported outcome measure/patient-reported experience measure data. an embedded process evaluation drawing on normalisation process theory integrated qualitative data and researcher reflections, analysing barriers to and facilitators of implementation of improvements within and across settings. setting the setting was two stroke units in london and two stroke units in yorkshire (acute and rehabilitation settings). the national acute organisational audit report [royal college of physicians, care quality improvement department on behalf of the intercollegiate stroke working party. sentinel stroke national audit programme (ssnap): acute organisational report. london: royal college of physicians; . url: www.strokeaudit.org/documents/national/acuteorg/ / -aoanationalreport.aspx (accessed april )] showed that all four units performed within the mid-range across key quality indicators and were subject to the staffing pressures and caseload complexity reported nationally. participants a total of staff, stroke patients and family members (carers) were recruited for the evaluation. participants and additional staff, patients and family members took part in various stages of the experience-based co-design cycle. forty-three co-design meetings were held across all sites, involving stroke patients, family carers and staff from across all professions and including rehabilitation and support workers, and volunteers. results our rapid evidence synthesis revealed three main outcomes: ( ) the value of patient and staff involvement in co-design; ( ) generation of ideas for changes to processes, practices and clinical environments; and ( ) tangible service changes and impacts on patient experiences. overall, there was a lack of rigorous evaluation of co-production studies in acute health care. future studies should scientific summary nihr journals library www.journalslibrary.nihr.ac.uk xxiv https://www.strokeaudit.org/documents/national/acuteorg/ / -aoanationalreport.aspx consider the clinical and service outcomes and cost-effectiveness of co-production relative to other forms of quality improvement. the findings of the rapid evidence synthesis informed our approach to implementing experience-based co-design, including recognising the importance of local facilitators, recruiting a broad number of patient and carer co-design group members, and maintaining an emphasis on the relational aspects of the work. qualitative findings (interviews and observations) across all units showed that it was feasible to co-design changes to increase activity through joint work in three priority areas: ‘space’ (environment), ‘activity’ and ‘communication’. experience-based co-design led to improvements in both its full and its accelerated forms. sites and together co-produced and implemented more than improvements across the three priority areas over months. filmed patient narratives from these sites proved powerful triggers for action and were utilised at sites and , where a similar number and range of improvements were implemented over an accelerated time period of months. changes across sites were broadly similar and included environmental and (unit) organisational changes to enable greater social interaction between staff, patients and families; engagement with the community and voluntary sector to provide singing, art and exercise groups; therapy dogs; and personalising bed spaces to encourage ‘home into hospital’, using ‘something about me boards’ for every patient, and introducing photo-hangers and familiar home items to facilitate greater social interaction between patients and staff. post-implementation interviews indicated that patients, family members and staff had engaged well with experience-based co-design and reported that substantive changes had occurred. patients and families perceived positive benefits from participating in the co-design groups, felt that they were equal and valued members and gained satisfaction from seeing improvements implemented. staff reported that create (collaborative rehabilitation in acute stroke) had been a positive experience, in contrast to their usual work that left little time for creative thought and relational activities. staff across all units saw co-design as a way to make positive changes to their working environment that provided more activity opportunities for patients. staff who had not taken part in experience-based co-design expressed similar perceptions. ethnographic observations confirmed the use of new social spaces where patients and families could meet and interact, and more activity opportunities provided by groups and community volunteers. however, we found minimal change in the priority area of ‘communication’; staff interactions remained fundamentally task focused, with minimal interaction with patients beyond that required for routine care tasks. activity levels measured with behavioural mapping were largely inconsistent, showing a mixed pattern of activity and inactivity in those observed pre or post implementation of co-designed changes. taking the broad measure of ‘activity’, there was improvement across all sites, but fewer changes were evident at sites and (accelerated experience-based co-design) than at sites and (full experience- based co-design). patient-reported outcome measure/patient-reported experience measure data were inconsistent across sites. response rates were low, varying from % to %, but cohorts who returned questionnaires had impairment levels, dependency, and emotional and social limitations congruent with national stroke statistics. patient-reported experience measure data suggested an increase in patients reporting that they had ‘enough things to do in their free time’ post implementation of experience-based co-design. using normalisation process theory to interpret factors influencing engagement with experience-based co-design and implementation of co-produced improvements, we found that the structured time-limited process of experience-based co-design in both the full and the accelerated forms legitimised and doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xxv supported participatory co-production activity. all participants recognised that increased activity needed to be embedded in everyday routines and work in stroke units. communication between staff and patients that supported activity was most challenging to initiate and sustain. conclusions it has proved feasible to implement experience-based co-design in four stroke units. doing so resulted in qualitatively positive changes in the unit environments and increased activity opportunities for patients. there was no discernible difference in experiences or outcomes between the full and the accelerated form of experience-based co-design. staff, patients and families in all sites engaged in similar ways with co-design and developed changes in space, activity and communication. improvement ideas were successfully transferred and contextualised from sites and to sites and . staff participating in experience-based co-design reported a positive impact on their working environment, and patients and families perceived the process to be positive and constructive. staff not taking part were able to describe distinct changes to their working environment and more activity opportunities. the implementation of experience-based co-design and the co-designed changes were influenced by several factors and organisational processes, including long-established ward routines that prioritise care tasks, the need to achieve national audit targets and staff pressures compounded by high turnover and shortages. our findings mirror those of other research to increase activity levels on stroke units, which have shown mixed results. however, compared with previous studies, new activities and changes were driven by the perspectives of staff, patients and carers using a recognised quality improvement method. implications for health care the benefit of using co-design to initiate change we believe that the strength of experience-based co-design in both the full and the accelerated form is the facilitated, structured, participatory and time-limited process. the nature of the co-design ‘work’ was fundamentally different from usual staff-led – or externally driven – quality improvement initiatives in stroke. the approach prioritised the participation of stroke patients and families in more creative and relational interactions and outputs to improve opportunities for independent and supervised activity. the involvement of patients and carers increased the accountability of staff participants and made it less likely that planned changes would not proceed. co-design facilitated carers’ and volunteers’ continued involvement in activities and directly contributed to changes made to the day-to-day working of these stroke units. co-design also initiated new and ongoing engagement with local people and/or organisations for whom the hospital is a key part of local communities. the ongoing challenge of (in)activity in stroke units culture change in any organisation is challenging, and our project was no different. although the tangible improvements in space and activity opportunities were visible, many interactions between staff and patients remained largely task driven. interactions facilitating social exchange, cognitive activity or physical activity remained relatively uncommon. across all sites we found concern that ‘something must be done’ and a willingness for staff, patients and families to work together to make improvements. for this approach to be applied across stroke units, local facilitation by a staff member with protected and allocated time is required. the stakeholder mapping exercise at the start of experience-based co-design was critical. change requires buy-in and commitment from multiple stakeholders, including senior management, to validate the shift away from focusing on achieving national audit targets to a cultural recognition of the therapeutic value of stroke scientific summary nihr journals library www.journalslibrary.nihr.ac.uk xxvi unit care. this will take time, but trigger films and the experiences of the participants in the four units in our study could help encourage changes, many of which can be initiated quickly and relatively cheaply. early consideration of community/voluntary-sector engagement is also important and was a key learning point from sites and , which used the full experience-based co-design cycle. this enabled awareness-raising and interest from a range of local community groups that subsequently added to activity opportunities by providing art, exercise groups, reading and music activities. implications for research the cost-effectiveness of the methods used is unknown. quality improvement methods, such as the accelerated experience-based co-design used at sites and , could be highly cost-effective if improvements can reduce the inactivity of inpatient stroke patients, contribute to an increase in independence in activities of daily living and reduce length of stay. equally, the participatory approaches used in experience-based co-design can have a positive impact on the morale, meaning and purpose of staff in the face of increasing staff shortages and caseload pressures. our rapid evidence synthesis highlighted common barriers encountered in co-production approaches. however, we found little difficulty in recruiting patients and carers and retaining their involvement. this was largely because of the dedicated efforts of our local researchers and the willingness of staff in co-design groups to both engage with and support stroke patients and their families to participate in the process. several research questions have emerged from our study: l can the create accelerated experience-based co-design approach using stroke-specific trigger films be used in other acute stroke units, and what contextual adaptations would be required to enable an increase in activity opportunities for patients through changing the environment (space), communication (enabling activity) and activity opportunities (more access to voluntary and community groups, activity boxes, etc.)? l what additionally needs to be done to change the culture of activity on a stroke unit? how can ‘enabling activity’ become part of the routine work of all staff, including nursing staff? l what degree of cultural and environmental change is required to bring about a significant improvement in activity, and what are the alternatives to quantitative evaluation approaches such as behavioural mapping? l how can patients/families and local communities support sustained activity outside scheduled therapy provision? funding this project was funded by the national institute for health research (nihr) health services and delivery research programme and will be published in full in health services and delivery research; vol. , no. . see the nihr journals library website for further project information. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. xxvii chapter background introduction and context stroke care in the uk has improved radically since the launch of the national audit programme in and the national stroke strategy in . , access to specialist services, reduced length of stay and community services such as early supported discharge are now accepted as standard. however, important efficiency and process improvements such as these have not always been matched by the experience of patients, especially those with moderate to severe disability, who can spend weeks and months on an inpatient stroke unit. persistent concerns are raised about stroke unit environments that focus on organisational priorities, which provide minimal opportunities for patients’ social, cognitive or physical activity. , results from observational studies on stroke units since the s have consistently shown that, for most of the time (> %), patients are inactive and very often alone. – currently, the focus in relation to activity levels is the provision of structured rehabilitation by therapists [physiotherapists (pts), occupational therapists (ots) and speech and language therapists], which is audited against a national guideline that recommends that every day each patient should receive at least minutes of therapy, as appropriate. , however, audits and standards have not improved the experience of patients or increased activity opportunities outside these structured rehabilitation sessions with therapists. , this is critical as when patients are bored and inactive it can have an impact on aspects of their recovery and potentially foster a feeling that ‘nothing is being done’. in a recent commentary on mainstream approaches to quality improvement and the potential role of co-production, batalden highlighted how professionals and patients can become increasingly frustrated by product-dominant models, which focus solely on processes, actions and outputs, and that such approaches risk neglecting relationships and outcomes that are important to patients but are less easy to measure (such as patient preferences). however, improvement work to date in acute stroke care has been highly regulated and measured through national and local audits; there is an opportunity now for more creative responses to the persistent problem of very low activity levels in inpatient stroke units. co-production uses the experiences and assets of patients with stroke and their families to work together with staff to address the problem. , we aimed to evaluate ( ) whether or not co-production approaches can be used to improve the accessibility and quality of therapeutic activity in acute stroke care and ( ) whether or not the co-produced solutions in one stroke unit are transferable to other similar acute inpatient services. in this introductory chapter, we briefly describe stroke and stroke care and management, setting out the policy context before providing a brief summary of the persistent concerns about rehabilitation, inactivity and improving patient experience. we then describe experience-based co-design (ebcd), our chosen co-production method for quality improvement. our rapid evidence synthesis, conducted during the set-up of the sites and and for the ebcd study, is mentioned here briefly. chapter provides a description of the methods and chapter provides the results. the paper was published in . stroke: the state of play stroke statistics: organisational issues and impact stroke, known in recent public communications as a ‘brain attack’, can have a devastating impact on people’s lives and equally on the lives of those who live with and care for those people. the effects of doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. stroke are wide-ranging depending on the location and extent of the brain damage, but they can include paralysis and cognitive and communication difficulties among many other problems, such as difficulty with vision, continence and fatigue. stroke continues to be the largest cause of disability in the uk, and % of people leaving hospital will require help with activities of daily living. stroke incidence is high; , people will experience a stroke in the uk each year. although the numbers of first stroke have fallen significantly since , by the rate of people over the age of years having a stroke is expected to rise by % and the absolute number of people living with stroke will rise by %. population studies show that stroke incidence is not equal across different populations; people of black african, black caribbean or south asian ethnicity are more likely to have a stroke at a younger age. in london, black people are twice as likely as white people to have a stroke. in addition, people from more socially deprived groups are likely to experience more strokes earlier in life. these uk trends are also reflected in global studies that show that the absolute numbers of people who have a stroke every year, stroke survivors and related deaths, as well as the overall global burden of stroke, are great and increasing. estimates vary depending on the population sample and data sources, but it is suggested that in the uk there are , people aged ≥ years. this costs the uk economy approximately £ . b per year ( % of the nhs budget), of which £ b is spent on treatment, including organised inpatient stroke unit care. this figure is set to treble by . recent decades have seen significant developments in the organisation and management of stroke, particularly following the implementation of the national stroke strategy by the department of health and social care in . the role of organised stroke care is well established in significantly improving outcomes after acute stroke. most people experiencing a stroke in the uk will get early access to care provided by stroke specialist staff. large-scale service reconfigurations such as the london and greater manchester models have fundamentally changed care pathways, and the average length of stay on an inpatient stroke unit is likely to be around days. , large-scale reorganisation has also seen the case mix on stroke units change; patients with mild disability are discharged earlier as a result of the expansion of early supported discharge services, while critically ill patients with more complex and severe disability are likely to require a considerably longer inpatient stay. rehabilitation, recovery and persistent concerns the component of acute stroke care consistently highlighted as likely to improve long-term outcome is rehabilitation. this assertion is informed by research showing that early activity post stroke not only improves overall prognosis but also can reduce disability. this is reflected in the following statement from the department of health and social care’s national stroke strategy: rehabilitation after stroke works. specialist co-ordinated rehabilitation, started early after stroke and provided with sufficient intensity, reduces mortality and long-term disability. department of health and social care, p. . contains public sector information licensed under the open government licence v . rehabilitation is, therefore, a major part of stroke care. multidisciplinary stroke teams typically include doctors, nurses, social workers, therapists, dietitians and psychologists, but ots, pts, and speech and language therapists are recognised as the central providers of rehabilitation who aim to maximise independence and prevent further complications after a stroke. background nihr journals library www.journalslibrary.nihr.ac.uk the fifth edition of the national clinical guideline for stroke, published in , includes a number of key recommendations that, if followed, would have the most impact on the quality of stroke care. one of these recommendations is about the intensity of rehabilitation, and states: patients with stroke should accumulate at least minutes of each appropriate therapy every day, at a frequency that enables them to reach their rehabilitation goals, and for as long as they are willing and capable of participating and showing measurable benefit from treatment. reproduced with permission. intercollegiate stroke working party, page xiv similar recommendations were published in the national institute for health and care excellence (nice) guidelines for stroke rehabilitation and updated in more recent formulations of nice stroke rehabilitation pathways: offer initially at least minutes of each relevant stroke rehabilitation therapy for a minimum of days per week to people who have the ability to participate, and where functional goals can be achieved. if more rehabilitation is needed at a later stage, tailor the intensity to the person’s needs at that time. © nice stroke rehabilitation in adults: guidance. available from www.nice.org.uk/guidance/cg all rights reserved. subject to notice of rights nice guidance is prepared for the national health service in england. all nice guidance is subject to regular review and may be updated or withdrawn. nice accepts no responsibility for the use of its content in this product/publication each of the recommendations is underpinned by high-quality evidence that increasing the frequency and intensity of rehabilitation improves recovery and clinical outcomes. , this has strongly influenced the design and implementation of organisational change interventions with a focus on achieving large doses of therapy and the belief that ‘more is better’. , however, this hypothesis is built on three assumptions: first, that national stroke guideline recommendations on rehabilitation intensity are interpreted and enacted consistently by therapists; second, that therapy is available over all days of an inpatient week; and, third, that rehabilitation is the responsibility of therapists alone and not that of the whole multidisciplinary team. measuring the performance of stroke units against agreed standards is the responsibility of the stroke sentinel stroke national audit programme (ssnap). a minimum data set based on self-reported activity is collected continuously and reported quarterly, which includes performance against the rehabilitation intensity standard described above. although the proportion of patients reported to require therapy remains constant (pt and ot, – %; speech and language therapist, %), the median number of minutes received of the required intensity remains below the target of minutes (pt and speech and language therapist, minutes; ot, minutes), with wide national and regional variation. importantly, therapy is rarely a -day service; in , ssnap data showed that only % of stroke units had access to at least two types of therapy days per week. several authors have stated concerns about the focus on a -minute therapy guideline: , first, the accuracy of reporting and what is being counted and, second, that direct contact time with therapists could be considerably lower. clarke et al. carried out an ethnographic case study across eight stroke units comprising > hours of non-participant observations and patient-specific therapy observations and found that a considerable amount of time was spent carrying out activities relating to information exchange rather than patient-focused therapy. in another ethnographic study across three stroke units, taylor et al. found that therapists wanted to provide more therapy and felt guilty for not doing so; there was also a lack of multidisciplinary rehabilitation. both research teams found that rehabilitation was largely the responsibility of therapists, and patients were often observed as inactive outside their designated therapy sessions. evidence from these studies and others shows that the issue of inactivity of stroke patients on stroke units persists. studies consistently show that often the most disabled patients are likely to spend the majority of their time inactive and disengaged. , doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. https://www.nice.org.uk/guidance/cg some attempts have been made to address the enduring issue of inactivity, but with mixed results. a study in australia concluded that dose-driven interventions, including circuit class therapy and -days-a-week therapy, increased the amounts of therapy provided but did not increase meaningful patient activity outside therapy sessions; the researchers called for greater understanding of the drivers of activity outside therapy sessions. trammell et al. found that a programme of physical activities ‘prescribed’ in addition to structured therapy on a stroke unit was feasible, but again this was overseen and graded by therapists. although the research team found that staff and patients reported high satisfaction, levels of expectations about activity prior to implementation were not known and the activities consisted of repetitive exercises that required supervision. we question whether current models of ‘therapist’-focused inpatient stroke rehabilitation and reliance on ‘waiting for therapy to be delivered’ may foster dependency and inactivity and are, therefore, at odds with promoting activity and self-management in hospital and after discharge. , the irony is that a highly medicalised stroke unit can meet national quality standards but is counterproductive to promoting patients’ independent activity. overall, evidence suggests that acute health-care environments, staff, carers and patients could do more to enable an increase in activity, which could also have the potential to expedite discharge and decrease dependency on health and social care services in the longer term. , , we have found that although studies have identified short-term methods to increase patients’ activity, these are often driven by the perspectives of professionals, with little evidence of patient and carer involvement in the development and implementation of interventions. we subscribed to the ideal put forward by sir roger boyle, previously the national director for heart disease and stroke, ‘to make rehabilitation the basis of the patient’s day’ (p. ; contains public sector information licensed under the open government licence v . ). we also recognise that there is an opportunity for patients with stroke, families and staff to work together to address the issue of inactivity. studies thus far have emphasised the necessity to change but have not directly considered the ideas and experiences of the people that they seek to help. improving patient experience: acute health care improving patients’ experiences and putting patients at the centre of everything is a key aim of the nhs and is frequently reflected in health policy such as ‘putting patients first’, which highlighted citizen participation and empowerment as one of six characteristics of a high-quality, sustainable nhs. the value of innovations, which build on patients’ rights to drive up quality of experience, is becoming more apparent. nhs england’s five year forward view set out how the nhs must change, arguing for a more engaged relationship with patients and carers in order to promote well-being and prevent ill health. frameworks are now available for organisations to carry out organisational assessments to evaluate how patient experience is embedded into culture and operational processes, with ‘good’ exemplified by evidence of staff and patients who have worked together to improve services. to improve patients’ experiences, nhs policy-makers increasingly seek to encourage the development of new relationships between patients, carers and clinicians. these relationships are to be based on working together, in equal partnership, not only to make personal care decisions and agree care plans, but also to develop partnerships in which patients, carers and clinicians are involved in the co-design, co-commissioning and co-production of health-care services. , the nhs is a complex system, and to focus on patients’ experience when resources and workforce are under pressure is a fundamental and critical challenge. some authors have raised concerns that ‘the picture [patient experience] is one of monitoring and compliance rather than ownership and motivation to improve this key aspect of quality’. in addition, the empirical evidence for patient and public involvement is low and tends to be descriptive rather than evaluative. yet berwick states that ‘workers and leaders can often find the best gaps that matter by listening very carefully to the people they serve’; similarly, goodrich and cornwell highlight that ‘patients’ stories and patients’ complaints remind us of the importance of seeing the person in the patient and bringing patients’ experience alive’ (© the king’s fund; reproduced with permission under the cc by-nc-nd . licence, see: https://creativecommons.org/licenses/by-nc-nd/ . /). background nihr journals library www.journalslibrary.nihr.ac.uk https://creativecommons.org/licenses/by-nc-nd/ . / co-production we believe that engaging patients and staff in service redesign of stroke units could provide solutions that address the lack of activity outside structured therapy. co-production methods harness the power of patients, carers and staff to make changes they know and care most about. , , in the broadest sense, co-production means delivering public services in an equal and reciprocal relationship between professionals and people using services and their families. the central idea in co-production is that people who use services are hidden resources, not drains on the system, and that no service that ignores this resource can be efficient. advocates of co-production see it as a different way of thinking about public services, with potentially transformational consequences, as people who use services take control of defining and managing their care: the biggest untapped resources in the health system are not doctors but users. [. . .] we need systems that allow people and patients to be recognised as producers and participants, not just receivers of systems. [. . .] at the heart of [co-production], users will play a far larger role in helping to identify needs, propose solutions, test them out and implement them, together. cottam and leadbeater, p. . reproduced with permission from the design council [. . .] assessing, and evaluating the relationships and actions that contribute to the health of individuals and populations. at its core [co-production] are the interactions of patients and professionals in different roles and degrees of shared work. batalden batalden emphasises the value of health care as a co-produced service but that the essential aspects such as utilising all forms of knowledge are often neglected. the ambition of ‘shared work’ can be misinterpreted and the importance of trustworthiness between patients, carers and staff misunderstood. despite the increased focus on co-production in health-care policy and improvement, no studies have reported using a co-production approach or participatory methods to improve acute stroke care. however, there are examples from across other areas of acute health care. our first research question was ‘what is known about the efficacy and effectiveness of co-production approaches in acute health care?’. a rapid evidence synthesis published in systematically reviewed the outcomes of studies that had developed and implemented co-produced interventions in acute health-care settings. the review highlighted a lack of rigorous evaluation of the effectiveness and cost-effectiveness of co-produced interventions in acute health care (despite the increasing adoption of co-production as a form of intervention and one that typically drew on co-design approaches). nonetheless, the impact of what might be perceived as ‘small, mundane things’ and the range and quality of patient-focused improvements seems to have a large impact on experience. as other authors have commented, an increasing focus on the attached meanings, rhythms and time frames in a health-care service – the degree and type of ‘the doing’ – can shape services in profound ways. as interest in co-production within health-care improvement grows, so do the concerns that co-production may become misused or diluted from its original aim of enhancing collaborative work to produce public goods or services with citizens playing an active role. , co-production originated through a recognition of the role that service users play in determining the effectiveness of public services, but several authors have highlighted issues with the false impression of equality or implicit professional dominance that can emerge as relationships between service users and providers are – supposedly – reconfigured. , approaches that prioritise the narrative and lived experiences of those who use health-care services can have the power to captivate and engage staff, helping to create conditions necessary to enable shared improvement work. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. experience-based co-design with increasing attention to the potential for co-production and applying design thinking as a means of improving health care, participatory approaches such as ebcd have become more widespread. the ‘co’ in ‘co-design’ refers specifically to partnership, equity and shared leadership in terms of face-to-face user and provider collaboration in the co-design of services. , ebcd originated in as a participatory action research approach that explicitly drew on design theory and was first piloted in a head and neck cancer service at luton and dunstable hospital. through a structured six-stage process, ebcd entails staff, patients and carers sharing and reflecting on their experiences of a service, working together to identify improvement priorities, devising and implementing changes, and then jointly reflecting on their achievements. an important element of the approach is that patient experiences are gathered through filmed narrative interviews, and insights from these are shared with staff in an edited ‘trigger’ film. several years ago, an international survey of completed, ongoing and planned ebcd projects in health-care services found that at least ebcd projects had been implemented in at least six countries, with at least a further projects in the planning stage. the number of projects appears to be growing year on year, but, to our knowledge, ebcd has not been used in acute stroke services, despite the seemingly intractable issue of inactivity and boredom and an over-reliance on system- and (narrowly defined) outcome-focused improvement. full details of each of the six stages in ebcd can be found in the point of care foundation’s free- to-access online toolkit, which also provides lessons and feedback from staff and patients, including details of an ‘accelerated’ form of the method, which was previously developed and evaluated with funding from the national institute for health research (nihr) health services and delivery research programme. , a general overview of the approach is provided in the study by robert et al. the ebcd cycle, which typically takes – months, is divided into six stages: ( ) setting up the project; ( ) gathering staff experiences through observational fieldwork and in-depth interviews; ( ) gathering patient and carer experiences through observation and – filmed narrative-based interviews; ( ) bringing staff, patients and carers together in a first co-design event to share – prompted by an edited - to -minute ‘trigger’ film of patient narratives – their experiences of a service and to identify priorities for change; ( ) sustained co-design work in small groups (typically of four to six people) formed around those priorities; and ( ) a celebration and review event. one of the major barriers to the implementation of the approach is the time and costs involved. , questioning whether it is always necessary – for the purposes of local quality improvement work – to generate local trigger films in the discovery phase, locock et al. tested an accelerated approach that used a national video and audio archive of films; they found that this method generated a comparable set of improvement activities. building on this work, we first aimed to evaluate the feasibility of a full ebcd cycle and the impact of stroke patients, carers and staff co-designing and implementing interventions to increase activity in two stroke units. we then aimed to compare and contrast the impact of undertaking a full ebcd cycle in these two units with an ‘accelerated’ approach – which drew on the fieldwork and findings from the first two units – in two further units. we recognised that stroke projects addressing inactivity have focused mainly on physical activity, and for this project we used an umbrella term of ‘activity’ to be anything that patients do, however small, supervised or non-supervised, and encompassing physical, cognitive or social forms. in summary, we believe that rehabilitation and the promotion of activity should be considered as a joint enterprise that draws continuously on both lay experience and professional expertise; this contrasts with the largely unsuccessful target- and audit-driven approaches employed to date. an ebcd cycle may provide a novel space and sufficiently flexible structure for staff, patients and families to think creatively about how post-stroke care in stroke units could be redesigned to increase activity. central to the approach is the carefully considered development and implementation of workable solutions that can be applied and tested in routine practice through an iterative process of co-designing and background nihr journals library www.journalslibrary.nihr.ac.uk prototyping. this extended type of engagement recognises the necessarily adaptive nature of stakeholder involvement, and of the gradual crafting, refinement and emergence of innovative interventions. developing cultures of continuous rehabilitation is likely to require early and sustained involvement of the whole multidisciplinary team and some revision of their working practices, and the development of practical ways to engage and involve patients and their families. this led us to formulate the following research questions to be explored through our empirical fieldwork in four acute stroke units in england: l how do patients and carers experience the use of a co-production approach and what impact does it have on the quality and intensity of independent and supervised therapeutic activity on a stroke unit? l how do staff from acute stroke units experience the use of a co-production approach and what improvements in independent and supervised therapeutic activities does the approach stimulate? l how feasible is it to adopt ebcd as a particular form of co-production for improving the quality and intensity of rehabilitation in acute stroke units? l what role can patients and carers have in improving implementation of national clinical guideline recommendations on the quality and intensity of rehabilitation in acute stroke units? l what are the factors and organisational processes that act as either barriers to or facilitators of successfully implementing, embedding and sustaining co-produced quality improvements in acute care settings, and how can these be addressed and enhanced? doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. chapter methods: intervention development this study involved two main aspects: ( ) the ‘intervention’, consisting of ‘full and accelerated’ebcd, to generate and implement a number of co-designed changes to increase supervised and independent activities within four stroke units, and ( ) the evaluation, which was carried out pre and post implementation of the co-designed activities in each unit. for the purpose of the report, we first document the methods used in the intervention development and then present the evaluation components in chapter . parts of this chapter are based on clarke et al. © article author(s) (or their employer(s) unless otherwise stated in the text of the article) . all rights reserved. no commercial use is permitted unless otherwise expressly granted. this is an open access article distributed in accordance with the terms of the creative commons attribution (cc by . ) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. see: http://creativecommons.org/licenses/by/ . /. the intervention: full and accelerated experience-based co-design settings and sampling we set out to recruit four stroke units: two in london and two in yorkshire. we included stroke units that met the classification of a specialised stroke service defined as ‘capable of meeting the specific health, social and vocational needs of people with stroke of all ages’ set out in section . of the national clinical guideline for stroke (reproduced with permission). a stroke unit is classified as either a ‘routinely admitting stroke unit’ with hyperacute stroke units and acute stroke units or a ‘non-routinely admitting stroke unit’. all stroke units provide acute and rehabilitation care, but only hyperacute units admit patients within the first hours post stroke and return discharge data in ssnap. we also aimed to recruit stroke units with evidence of previous participation in research so that we could ensure that the units had an interest in delivering the research planned. stroke units were purposively selected following discussions held with senior staff and local stroke research networks. as advised by nihr, we aimed to include not those stroke units that were based in large teaching hospitals and already taking part in clinical trials, but those that showed a willingness and commitment to take part in a study such as create (collaborative rehabilitation in acute stroke) that comprised multiple stages over at least months. the two stroke units selected for the first stage and full ebcd were based in london and yorkshire; we refer to these stroke units as sites and . in the second stage, stroke units taking part in accelerated ebcd were also based in london and yorkshire (sites and ). each of the four sites was a non-routinely admitting unit that received patients only after they had been cared for in a hyperacute unit either in the same hospital (as at sites and ) or at a nearby major stoke centre (as at sites and ). more detail about each site is provided in table . each of the four sites was included in the most recent biennial ssnap acute organisational audit report, published in , which includes site-level and national performance against key indicators (see appendix , table ). the sites also return data continuously for the ssnap clinical audit, which measures performance against standards for key domains reflecting processes of care provided to patients. the clinical audit includes an overall performance score for months, made up of a combined total indicator score derived from the average of patient- and team-centred key performance indicators, case ascertainment and audit compliance. performance is graded a–e, with a indicating first-class doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. https://creativecommons.org/licenses/by/ . / table comparison of each unit characteristic site site site site number of stroke beds beds ( and ) hospital district general hospital with beds district general hospital with beds city-centre teaching hospital with beds district general hospital with beds layout the stroke unit is on the third floor of the hospital. it has an l-shaped layout with five bays, each containing four beds, and four single rooms. the end of one corridor connects directly to another medical ward and the nursing desk is at the end of the other corridor. visitor and staff catering services are on the ground floor of the hospital the stroke unit is on the third floor of the hospital. it has an l-shaped layout, a long main corridor with five bays, each containing four beds, and three side rooms off this corridor. day room and one-bed pre-discharge flat are in the smaller l-section. visitor and staff catering services are on the ground floor of the hospital the stroke unit is on the ground floor of the hospital. it has a central desk and one wide corridor with two male and two female bays, each with six beds, and two single rooms at the entrance to the ward. visitor and staff catering services are on the ground and first floors of the hospital the stroke unit is on the second floor of the hospital. it has a circular layout around four ‘pods’ that make up the stroke service. three pods, a, b and d, are rehabilitation wards and c is the hyperacute ward. there is access by lift to outside spaces including a small therapy garden and walkways around the main hospital site. visitor and staff catering services are on the ground floor of the hospital shared space no day room; no outside access day room used by staff as a storage and meeting area at start of study. no outside access day room used also by staff; access to outside garden day room on d in use as a chair store ( chairs) at the start of the study day room on b accessible but used frequently for staff meetings visiting hours . – . . – . . – . / . – . . – . meetings nursing handover between the day and night staff each morning. a brief morning multidisciplinary meeting, known as the ‘whiteboard meeting’, and weekly mdt meetings to review discharge plans. mdt meetings on tuesdays nursing handover between the day and night staff each morning and at o’clock for the late shift. therapists and nurses meet each monday morning. this ‘board round’ is at . ; mdt meeting every wednesday nursing handovers every day at . . and . ; mdt meetings on friday afternoon nursing handover between the day and night staff each morning; therapist handovers follow this monday to friday -day therapy service no an ot and a pt work on saturday covering the acute and rehabilitation units. on saturdays and sundays one stroke rehabilitation assistant is on the unit no no performance in last acute organisation report when units were graded against key indicators (see appendix , table ) achieved of the key indicators achieved of the key indicators achieved of the key indicators achieved of the key indicators mdt, multidisciplinary team. m e t h o d s : in t e r v e n t io n d e v e lo p m e n t n ih r jo u rn a ls l ib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k service, b indicating good or excellent in many aspects, c indicating reasonable overall – some areas need improvement, d indicating several areas need improvement and e indicating substantial improvement required. the ssnap acute organisational audit reports and the prospective clinical audit data provide an indicator of each site’s performance at a point in time, but reporting on these data carries several caveats. first, create sites – did not treat patients within hours (known as the hyperacute stage) following stroke and audit data also included results from these units providing hyperacute care. second, acute organisational audit data provide a snapshot of staffing at . and . and a whole-time equivalent at each grade against national indicators and the national medians on any given day, but this is likely to vary from day to day and does not include data about the severity of disability of the patients cared for. appendix , table , shows an overview of ssnap acute organisational audit site-level data and performance of all participating stroke units ( – ) against the key indicators. project governance and management the project needed health research authority approval, including an independent ethics review. in each of the four sites, a senior clinician was identified who acted as principal investigator; they negotiated site access, supported local approvals and took day-to-day responsibility for the study, including identifying potential participants. in addition to the senior clinician, each stroke unit nominated a group of core clinical staff, which included senior nurses, therapists, dietitians and psychologists. they played a key role in ebcd by helping facilitate introductions and communications with local stakeholders such as head of estates, volunteer co-ordinators, matrons, general operation managers, and communication leads for the trust. after receiving training from the point of care foundation about the six stages of ebcd, the core groups assisted the research team with communications about the stages of co-design and explained to all staff how this might advance in their own stroke units. the point of care foundation training was delivered by an independent facilitator who had experience in ebcd and it was carried out before ebcd commenced with teams from across the two stroke units in stage and then later with the further two stroke units in stage . training consisted of a full day for sites and but was reduced to a half-day for sites and following feedback from clinical teams. further detail of training is in report supplementary material . in each stroke unit, the core staff and principal investigators helped researchers by identifying patients and family members who might want to engage with co-design and inviting them to do so. following the guidance given in the ebcd toolkit, patients were recruited if they had been an inpatient on the unit in the previous – months and ranged in terms of ethnic group, gender and stroke severity. we set out to recruit patients with and patients without family members and a similar number of staff. steps of the process (full and accelerated experience-based co-design) we followed all six stages of ebcd at sites and , completing the full co-design process. this enabled staff, patients and families to reflect on their experiences of the acute stroke unit, work together to identify improvement priorities and devise and implement changes, and then jointly reflect on their achievements. at sites and we began an ‘accelerated’ process at the joint staff and patient event, using the composite films from sites and to trigger discussion about priorities for co-design. ebcd in create was also embedded in our mixed-methods case evaluation and we undertook pre- and post-implementation data collection that is not part of a standard ebcd approach; this comprised extended ethnographic observations, behavioural mapping and patient-reported outcome measure (prom)/patient-reported experience measure (prem) questionnaires. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. the six stages of the ebcd cycle are described as typically taking – months to complete. the full ebcd cycle, contextualised to create and used at sites and , is shown in figure and described in more detail below. stage : setting up the project stage involved a period of stakeholder mapping with the core staff team to identify key contacts and services and/or staff who could help champion the co-design process in the trust and expedite approvals required on each unit for changes in layout, décor, or activities. we formed study oversight groups with trust leads at sites and , meeting in person and communicating by e-mail. core staff, together with researchers, developed posters and flyers about the project and held briefings with larger staff groups at different times during the day, for example nursing handover, goal-setting meetings with therapists and weekly multidisciplinary team meetings. stage : gathering staff experiences through observational fieldwork and in-depth interviews in stage , staff were interviewed to explore their experiences of working on the stroke unit, particularly with respect to routines, structures and interactions in the team and with patients (see table for numbers of staff interviews). we also explored how ‘activity’ was perceived and what staff felt were the barriers and limitations to activity that could be addressed through co-design. researcher-led ethnographic observations, which contributed both to ebcd and to pre-implementation evaluation data collection, were carried out at each site. observations were carried out over a -week period or less and included weekday and weekends between . and . , between . and . or between . and . . the purpose, described in more detail in the evaluation section of this chapter, was to develop an understanding of the social and organisational processes linked to activity and the regularities and irregularities of the organisation of work and of social interaction in order to enhance our understanding of how and why stroke patients may be active or inactive during the inpatient day. stage : gathering patient and carer experiences through observation and filmed narrative-based interviews in stage , patients and families were observed as part of the researcher-led ethnographic observations and staff observations described above. patients and families were recruited for filmed narrative interviews that were edited into one composite film specific to sites and . most patients were filmed in their homes, with one patient choosing to be interviewed in a university building. interviews lasted between and hours, during which time their experiences of being a patient on the stroke unit were explored. some patients chose to be interviewed with their family member or on occasion separately for practical reasons. family members reflected on their experiences of visiting and supporting their relative during the admission. the interviews explored routines and structures that either helped or hindered activity; interviewers encouraged patients to reflect on their activity during full ebcd small co-design teams combined staff and patient co-design event patient event staff event engaging staff and patients setting upcelebration event figure full ebcd cycle used at sites and . methods: intervention development nihr journals library www.journalslibrary.nihr.ac.uk a usual day and across the whole week, including weekends. the composite films were produced for sites and and comprised nine patients and three family members (site ) and seven patients and four family members (site ). stage : bringing staff, patients and carers together at separate and joint events in stage , the interview and observational data from stages and were summarised to draw out key themes and help orientate discussions towards priorities for change. the composite films comprised a narrative of patients’ and family members’ reflections and experiences of being on the stroke unit and several touch points. the duration of the composite film was minutes and minutes for sites and , respectively. patient events through a staged process of facilitation and discussion, following guidance and methods suggested by trainers from the point of care foundation, patients and families viewed the composite film and explored their ideas for change. these methods included an icebreaker exercise and working in small groups to brainstorm ideas and emotions after viewing the film. emotional mapping was used to rank and prioritise ideas for change from most to least important and to refine the final list to be shared with staff at the joint event. staff events the staff events were structured in a similar way to the patient events but without the use of a composite trigger film. discussion and ideas were generated following the research team’s presentation of observational data and staff interviews. through a staged process of facilitation and emotional mapping exercises, they explored ideas about areas for change, and generated a list of ideas and priorities as a group to present to patients and families at the joint event. joint events patients and staff then came together for a joint event. the numbers of attendees at each event are shown in table . other stakeholders from the trust, including volunteer co-ordinators and senior nursing and therapy managers, also attended these events. attendees watched the composite film, and the staff and patient/family groups then separately presented their list of priorities. facilitated by the researchers alongside the core team members/champions, staff, patients and families worked in small groups through a staged process of sharing and discussing what they had heard, what resonated and what they perceived as the most important priorities for change. during several stages of discussion, each small group chose their joint priorities; through stages of voting and discussion, the wider group agreed a final list. participants then indicated which priority areas they preferred to work on and signed up for one (or more if they wished) of the co-design groups at each site. table number of co-design groups held site co-design participants (n) number of co-design group meetingspatients carers staff site site site site total doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. stage : sustained co-design work in small groups formed around priorities in stage , co-design groups were held over – months, with groups meeting up to five times. co-design groups were researcher supported and co-led with clinicians, and they typically lasted . – hours. the groups were held in accessible spaces, usually on site at the hospitals, and timed for after the midday meal to gain maximum attendance from nursing staff. refreshments and transport for patients and families were provided if required. each group explored the ideas within their own priority area and developed action plans; researchers made notes and shared these with all participants after each group to confirm actions. tasks such as contacting estates or local voluntary groups were delegated and shared among the group. stage : a celebration and review event an important part of the ebcd process is the opportunity for staff, patients, carers and researchers to come together and celebrate their involvement in developing, implementing and sustaining the co-designed changes. , celebration events were held in both sites and and were attended by approximately patients, staff and families. the events included presentations and informal sharing of experiences by those staff and patients involved in the co-design process, reflecting on the changes that had occurred and the lessons learnt and summarising the post-implementation data from observations and staff and patient interviews. the research team gave an overview of the progress of the create project across sites and the plans for the next stage. a number of additional events enabled further dissemination of the project, including a mayoral visit and an official launch of the changes in the stroke unit at site , as well as more detailed feedback of the results to small groups of staff and other stakeholders. break point our original proposal aimed to have a break point between phases and (full and accelerated ebcd) to review the results and evaluate changes in behavioural mapping data and experiences of implementing the co-produced interventions from qualitative findings. if a positive change was found in supervised and independent therapeutic patient activity following the implementation of co-produced interventions, evidenced in either behavioural mapping data or qualitative data from post-implementation interviews and feedback events, then we would proceed to test the interventions in two further stroke units in phase . subsequently, ethics approvals (see report supplementary material ) stated that we would have to submit substantial amendments detailing the range of changes in phase (sites and ) that might be expected, and this approval would need to be in place before recruiting and commencing at sites and . we were able to demonstrate to the study steering group that the qualitative data indicated positive change but changes in behavioural mapping data were inconsistent. following guidance and discussion with our study steering group and nihr manager, we had agreement to proceed to phase . on reflection, the use of the break point should have been defined not as ‘potentially stopping’, but rather as using the findings from phase (sites and ) to plan and inform the accelerated ebcd at sites and . ‘accelerated’ experience-based co-design sites and our research questions asked how feasible it would be to adopt ebcd as a particular form of co-production for improving the quality and intensity of rehabilitation (activity) in acute stroke units. the full ebcd carried out at sites and took – months. our methods for sites and were informed by locock et al., who showed that it was possible to accelerate the process using a national video and audio archive. we were keen to use the stroke-specific trigger films developed at sites and and contextualised at two further sites using the methods outlined below. consequently, at sites and we sought to reduce the length of the process by making two distinct changes from the methods of locock et al. methods: intervention development nihr journals library www.journalslibrary.nihr.ac.uk first, we used the trigger films already generated by stroke participants at sites and . although staff and patients were still interviewed as part of our pre- and post-implementation data collection, we chose not to film the interviews or edit the narratives to produce a composite film; instead, we used the trigger films from sites and . second, we progressed straight to a joint event after site set-up, interviews and observations without holding separate staff and patient events. this meant that staff, patients and carers saw the film together for the first time but the same methods were used in the joint event to explore ideas and priorities and to develop co-design groups. a total of staff, patients and families attended the joint events at sites and , and again co-design groups were formed around agreed priorities (figure ). celebratory events were held at sites and in a similar way as at sites and . staff, patient and family members gave presentations and shared experiences informally, and the research team gave a summary of the project and progress. further dissemination and spread of project findings happened at sites and , including a mayoral visit and official launch of the new common room at site , and an open day at site , as well as more detailed feedback of the results to small groups of staff and other stakeholders. small co-design teams accelerated ebcd combined staff and patient co-design event engaging staff and patients setting up celebration event figure accelerated ebcd used at sites and . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. chapter methods: the evaluation parts of this chapter are based on clarke et al. © article author(s) (or their employer(s) unless otherwise stated in the text of the article) . all rights reserved. no commercial use is permitted unless otherwise expressly granted. this is an open access article distributed in accordance with the terms of the creative commons attribution (cc by . ) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. see: http://creativecommons.org/licenses/by/ . /. design and conceptual framework our evaluation used a mixed-methods, case comparison design. we conceptualised the development and implementation of the co-produced interventions as an organisational and social process involving interaction between the creators and the users of knowledge. translating the knowledge arising from health services research into practice through the implementation of service innovations remains a key challenge in the drive to improve the quality of health care. organisational and social processes will largely determine whether or not service improvements to patient, family and staff experiences are implemented in practice. although frameworks have become increasingly sophisticated, the influence of context has not been fully accounted for in these models. our aim was to evaluate the feasibility and impact of patients, carers and clinicians co-producing and implementing interventions to increase supervised and independent therapeutic patient activity in acute stroke units. we were particularly interested in the processes by which co-designed improvements are implemented in particular contexts and settings, and whether or not this process could be enhanced. we aimed to study both the impact of the improvements designed to increase activity and the feasibility of using ebcd in stroke units for the first time and the experiences of staff, patients and families taking part. we used normalisation process theory (npt) to study the implementation and assimilation of the co-produced interventions in the local context of our study settings. , the evaluation team consisted of researchers based at each site (fj, kgw, dc and sh) who were supported by the wider project group (am, gr, rh, cm and gc). the site researchers were responsible for all data collection. analysis and interpretation were shared by the whole group. during phases and , researchers were regularly present on the stroke units and attended staff meetings, handovers and training sessions to engage staff in the project and communicate with stroke unit-based clinical staff during pre and post data collection. we used multiple data collection methods to generate quantitative and qualitative data to address the project’s research questions: . what is known about the efficacy and effectiveness of co-production approaches in acute health care? . how do patients and carers experience the use of a co-production approach and what impact does it have on quality and supervised and independent therapeutic activity on a stroke unit? . how do staff from acute stroke units experience the use of a co-production approach and what improvements in supervised and independent therapeutic activities does the approach stimulate? . how feasible is it to adopt ebcd as a particular form of co-production for improving the quality and intensity of rehabilitation in acute stroke units? . what role can patients and carers have in improving implementation of national clinical guideline recommendations on the quality and intensity of rehabilitation in acute stroke units? . what are the factors and organisational processes that act as either barriers to or facilitators of successfully implementing, embedding and sustaining co-produced quality improvements in acute care settings, and how can these be addressed and enhanced? doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. https://creativecommons.org/licenses/by/ . / question was answered in a rapid evidence synthesis published in . we anticipated that the findings would inform intervention phases and highlight the gaps in existing studies that could be addressed through our project phases. the aim was to identify and appraise reported outcomes of co-production as an intervention to improve the quality of services in acute health-care settings. there are no agreed international guidelines for designing and conducting a rapid evidence synthesis. however, there is overall agreement that the process should involve providing an overview of existing research on a defined topic area, together with a synthesis of the evidence provided by these studies to address specific review questions. rapid evidence syntheses are typically completed in – months, which does not normally allow for all stages of traditional effectiveness reviews. the rapid evidence synthesis was conducted between january and june . the search terms used were specific to the use of co-production in acute health-care settings (see appendix ). to keep the search focused on co-production approaches, we omitted broader search terms, including co-operative behaviour, patient participation, collaborative approach and service improvement. database searches were conducted for the period january to january . given that two more general reviews relating to co-production had been published previously, , and given the create study focus, we reviewed post- evidence and only that reporting on studies in acute health-care settings. we completed citation tracking of five seminal papers; in addition, five experts in co-production were requested to nominate three to five seminal papers relevant to our review. the databases searched and the inclusion and exclusion criteria are given in appendix and the prisma (preferred reporting items for systematic reviews and meta-analyses) flow diagram and checklist for the rapid evidence synthesis are in report supplementary material . screening two reviewers independently read all titles and abstracts. differences in retain or reject decisions were discussed by the two reviewers, with the involvement of a third reviewer when consensus could not be reached. three reviewers independently read the included full-text papers; decisions to retain or reject were made independently based on the inclusion criteria. all three reviewers then reached a consensus on retain or reject recommendations. the same three reviewers completed data extraction. the quality appraisal checklists developed by nice for quantitative and qualitative studies were used. these address areas of study quality ranging from theoretical approach to study design, data collection and analysis methods and ethics review. two reviewers undertook data extraction and quality appraisal independently for each study. we did not exclude studies on the basis of quality appraisal, including all studies in the synthesis to inform discussion of the evidence identified. a mixed research synthesis approach was used. studies were grouped for synthesis not by methods (i.e. qualitative and quantitative) but by findings viewed as answering the same research questions, or addressing the same aspects of a target phenomenon. our main evaluation focused on research questions – . prior considerations during project set-up and commencement, we recognised that the term ‘rehabilitation’ as used in our original application can be misleading and is often interpreted by patients as treatment delivered by a therapist. in the create study we focused on supervised or independent social, cognitive and physical activity undertaken by patients and occurring outside one-to-one therapy sessions. we used an umbrella term of ‘activity’ for anything that patients do with or without help, however small, outside methods: the evaluation nihr journals library www.journalslibrary.nihr.ac.uk an individual one-to-one scheduled session of therapy. this could also include ‘clinical’ or ‘daily living’ activities, such as walking assisted/unassisted to the bathroom or getting dressed, and talking to other patients or to staff. of note is that the ethnographic observations and semistructured interviews conducted with patients and carers and staff pre and post completion of the ebcd cycles were used both to inform the ebcd process and as part of our evaluation. prior to the introduction of ebcd, data generated using these methods enabled the research team to develop an understanding of what was occurring at those points in time and what activity was wanted going forward, and of staff members’, patients’ and carers’ experiences in these stroke units. post the ebcd cycles, these data enabled the research team to develop an understanding of staff members’, patients’ and carers’ experiences of the ebcd process and their perspectives on the changes designed and implemented to increase social, cognitive and physical activity opportunities in these four stroke units. an overview of our data collection methods and whether the methods were used for evaluation, ebcd or both is provided in table . procedure and participants the observations and the interviews were conducted with patients and carers and staff pre and post completion of the ebcd cycles. behavioural mapping was carried out with patients who were present on the stroke unit and able to provide informed consent the day before data collection. interviews with staff across all specialties and grades took place after observations had been completed (pre and post ebcd) in each site. patients’ interviews took place within – months of their discharge from the stroke unit, when enough time had passed for adaptation to life at home to have begun, but soon enough after their inpatient care episode to allow reasonably accurate recall. family members were recruited at the same time as patients. proms and prems combined in a single questionnaire pack (see table ) were sent to all patients discharged from each stroke unit in the months prior to data collection in the pre-ebcd period and all those cared for during the ebcd/intervention period at each site. table timings of data collection and the methods used site staff interviews: ebcd and evaluation patient interviews: ebcd and evaluation carer interviews: evaluation proms/prems: evaluation bm: number of participants bm: number of observations observations: ebcd and evaluation site pre . hours site post . hours site pre hours site post hours site pre . hours site post hours site pre hours site post hours total . hours bm, behavioural mapping. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. sampling and recruitment recruitment we aimed to recruit participants who reflected the population of stroke patients admitted and discharged from our sites, who would naturally include patients with different levels of stroke severity, gender, age and ethnicity. we also aimed to include participants who had communication and/or cognitive impairments in order to reflect the stroke population, and encouraged family members to provide support when patients were unable to complete the questionnaires or take part in interviews. several strategies were used to estimate our target numbers for recruitment. based on stroke admission data across london and yorkshire, we estimated that it would be possible to collect prom/prem data from an independent sample of patients from each unit pre and post implementation of co-produced interventions. behavioural mapping data collection took place during non-consecutive days. we aimed to recruit a minimum of four and a maximum of eight patients who met the inclusion criteria and were able to provide consent on the day before the observation. pre implementation of ebcd cycles, we aimed to purposively recruit a sample of approximately – staff, stroke participants and family carer members ( – in total from each unit) to take part in interviews as part of the co-design process. stroke participants and family members or friends (carers) were also recruited – months after discharge from the stroke unit to allow time for adaptation to life at home to begin, but sufficiently soon after their inpatient care episode to allow reasonably accurate recall. post implementation of ebcd cycles, we aimed to recruit a further sample of up to members of staff/patients and carers in each of the four sites to participate in semistructured interviews to explore their experiences post implementation of co-designed interventions. we also aimed to carry out interviews with a sample of staff members, patients and families who took part in the co-design groups to explore their experiences of being part of the whole process. the size of the sample was also informed by reaching thematic saturation during data analysis. sampling technique l convenience sampling was used to collect prom/prem data from consecutive patients and family/carer members discharged from participating stroke units over a - to -month period. l purposive sampling was used for behavioural mapping to ensure that recruited participants included those with different levels of stroke severity and those with aphasia (who are often excluded from stroke research). l purposive sampling was also used to recruit staff who worked on the participating stroke units. to ensure that a broad range of views were accommodated, we aimed to recruit staff from different grades and professional groups. in recruiting patients/families, we included those with experiences that varied according to the severity and range of impairment, as well as those stroke patients who may not have family members. data collection methods evaluation data collection took place pre and post implementation across all four sites. table shows the timings of data collection and the methods used: l semistructured interviews with patients and carers were carried out to elicit their perceptions and recall of opportunities for and experiences of activity in the stroke units. patients from each unit were interviewed post discharge, and (at sites and ) in the pre-implementation stage these interviews were filmed. topic guides for all of the interviews are in appendices – . methods: the evaluation nihr journals library www.journalslibrary.nihr.ac.uk l semistructured interviews with staff were carried out with staff with a range of stroke unit experience, from pts, ots and speech and language therapists, to nurses, doctors, psychologists, dietitians and support workers, at different grades, to elicit their perceptions of the stroke unit and the opportunities for and experiences of patient activity. in addition, staff perceptions of organisational processes that influenced activity with patients, carers and other members of the stroke team were explored, together with their views on areas in which additional supervised and independent therapeutic activity could be enhanced. l proms and prems were sent to more than patients cared for in each unit in the months pre and post implementation (and cared for during the ebcd period). these measures are postal self-completed measures previously developed, reviewed and agreed in consultation with experienced stroke clinicians in west yorkshire as part of the clinical information management system for stroke study [a collaboration for leadership in applied health and care (clahrc) project]. the measures allow a carer or a family member to record responses for a patient, if necessary, and were used successfully with patients after stroke in the clinical information management system for stroke study. the prom incorporates validated measures including the oxford handicap scale, the subjective index of physical and social outcome and the euroqol- dimensions (eq- d). the prem was developed by kneebone et al. and is a validated tool for patient-reported experience of neurological rehabilitation. l non-participant observations (ethnographic fieldwork) in each stroke unit took place pre and post implementation. an observational framework developed for use in a previous process evaluation of caregiver training was used to record observations of the stroke unit contexts, organisational processes, staff and patient interactions and instances of planned and unplanned activity, including noting when timetabled therapy was occurring on a one-to-one or group basis (see appendix ). observations, typically of – hours each, took place across days at different times of the day, evenings and at weekends in order to develop understanding of how activity may vary across a range of times and days of the week. l behavioural mapping was used to record any social, cognitive or physical activity. these data were generated to establish an indication of activity levels in each unit at a given time point before and after the ebcd cycle was implemented. the data were from separate groups of patients; thus, we did not seek to compare ‘before and after’ scores for individual patients but rather we used the behavioural mapping data as a broad indicator of activity level. the approach was adapted from that successfully employed in two earlier stroke studies concerned with increasing patient activity. , patients on the stroke unit were screened hours before to determine whether or not behavioural mapping would be feasible. we aimed to recruit a minimum of four and a maximum of patients who met the inclusion criteria and were able to provide consent on the day before the observation. this number was achieved across all sites (see table ). the patients were observed at -minute intervals between . and . or between . and . on separate days. this allowed for up to observations of each patient per day. we varied the times and days of the week for behavioural mapping to allow for possible variation in activities by day of the week. during each -minute interval, the data for each patient were based on an observation made by the researcher over a period of no longer than seconds. the researcher observed one participant and then progressed to the next participant. the researchers positioned themselves so that they could see the participants – at the same time taking steps to be inconspicuous – and noted where they were, what they were doing and who was present in the same location as the patient. observations began at the commencement of each -minute interval (i.e. . , . , . , . , etc.). the behavioural mapping protocol and recording instrument are in appendix . in our initial proposal, we anticipated accessing the ssnap data at an individual patient level to enable us to compare patient dependency during the periods of study, a factor that can influence the activity levels achieved. we had anticipated that we could collect these data on the ward before they were uploaded to ssnap, but we were not able to gain permission for access. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. we agreed that pursuing access to the anonymised ssnap data would prove overly time-consuming and impossible within the project time scales. this change was discussed in full by the study steering committee and approved by our health services and delivery research programme manager. an additional justification for this decision was that the national case-mix data are based on the patient cohort within the first hours, that is while at the first routinely admitting stroke unit. each of the create sites was non-routinely admitting and received patients repatriated from the main routinely admitting hospital linked to their unit. data analysis qualitative data analysis we first describe the processes used to analyse the qualitative data generated from non-participant observations of staff, pre ebcd training and activity, during ebcd (i.e. of the separate patient and carer, staff meetings, joint meetings and co-design meetings) and from interviews with patients, carers and staff pre and post ebcd. the integration of these data in the ebcd evaluation and also in the linked process evaluation involved an iterative approach to analysis that focused initially on the data generated at each site and then progressed, using team half-day analysis meetings, to a comparison between sites, as described below. interview data video files (patients and carers at sites and ) and audio files (staff all sites and patients and carers at sites and ) were transcribed verbatim. the research fellows and research lead for each site completed an initial thematic analysis of the data at each site (london and yorkshire) and prepared summary memos identifying the main themes and summarising the key issues related to the presence or absence of activity outside therapy, the opportunities to make changes and the attitudes towards possible changes. these summary memos were then compared and reviewed iteratively in a series of half-day face-to-face meetings (held approximately every months in london or leeds) by all four researchers, before the summaries were presented to and discussed with study steering committee members. for observational data, field notes were prepared by each researcher conducting an observation and shared among the researchers for that site. on completion of the series of observations (pre and post implementation and during ebcd activities), summary memos were developed to identify recurring themes and to compare and contrast findings from pre- and post-ebcd activities within and then between sites in london and yorkshire. again, these were compared and reviewed iteratively by all four researchers in a series of half-day meetings (as described above) before being shared with study steering committee members. the memos included references to contextual factors considered relevant to service delivery, and to patient experiences of the ebcd process in each site. these processes were used for sites and and then repeated for sites and . following these half-day meetings and the discussions resulting from presentations of the ongoing data analysis, the core and cross-cutting themes reported in chapter were developed and agreed by the research leads for london and yorkshire and shared with study steering committee members. integration of data in the experience-based co-design evaluation and process evaluation the data used in the process evaluation were not generated separately from those used in the main evaluation of the feasibility of using full and accelerated ebcd in the four sites; rather, the same data were critically examined using npt’s four core constructs and associated components. a data collection plan linked to npt’s four constructs was developed prior to data collection. the purpose of the plan was to engage with the npt constructs as data were analysed at each time point, and to identify evidence of (in the summary memos described above) examples such as staff progression from coherence to cognitive participation. this might comprise staff making sense of the ebcd approach, then thinking about what introduction of and support for increased patient activity outside planned methods: the evaluation nihr journals library www.journalslibrary.nihr.ac.uk therapy would mean for them individually and for the routine service provision currently in place. once the ebcd activities had ceased at sites and , the summary memos and the researcher reflections were reviewed by the research lead for the process evaluation and a draft single integrated account was constructed. this was reviewed by the research team as a whole, and the final agreed account is presented in chapter . our approach comprised both an ongoing integrative analysis of these data focused on staff and patient engagement with the ebcd process and on designing and implementing changes to promote or directly support increased activity, and a post hoc review of the full integrative data set. confirmability of analysis was further enhanced through a process of independent, joint and team half-day analysis and review cycles, after which the emerging analysis was discussed with the study steering committee members. credibility and transferability of the analytical approach are evident in how we have used detailed data extracts and interview quotations to support plausible explanations of the observational and interview data in terms of participants’ engagement with ebcd and the facilitators of and barriers to its introduction and use in the four sites. we incorporated researcher reflection and reflexivity in the data collection process and used these insights in the team analysis of the data. quantitative data analysis behavioural mapping we entered all data into a spss (statistical product and service solutions) (ibm corporation, armonk, ny, usa) file and described the frequency of activity occurrence for each participant during each data collection period. this approach, used by askim et al., included additional categories in social and cognitive activity. these data were used to generate descriptive statistics to quantify the proportion of physical, social and cognitive activity occurring for each patient during the period of observation. patient-reported outcome measure and patient-reported experience measure data these data were entered into a spss file and reported as descriptive statistics (or frequency counts) for each item. these data provide insight into patients’ perceived functioning post stroke (prom) and their experiences on stroke units (prem). some of the prem items sought responses directly related to opportunities and resources for activity. figure depicts our integrative approach to analysis across the whole data set (qualitative and quantitative) process evaluation. process evaluation methods a parallel process evaluation aimed to understand the functioning of the intervention (i.e. the co-design and generation of new activities in each stroke unit) by examining implementation, mechanisms of impact and contextual factors. mechanisms of impact refer to the ways in which intervention activities and participants’ engagement with them trigger change in a given setting. process evaluations contribute to understanding the impact and outcomes of complex interventions. we adopted primarily qualitative methods in the process evaluation (see below), which was informed by npt. normalisation process theory is an established middle-range theory concerned with understanding how complex interventions are implemented and integrated into existing health-care systems. npt is conceptualised through four main constructs (table ). these constructs or generative mechanisms can help explain how interventions are embedded and ‘normalised’ within routine care. in essence, the mechanisms represent what participants ‘do’ to get the required work done successfully. in general terms, the mechanisms can be understood as participants making sense of a new or different way of working, committing to working in that way, making the effort and working in that way and undertaking continuous evaluation and, if necessary, making adjustments to bring about a situation doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. where what was once a new and complex intervention becomes a normal part of everyday practice. clearly, not all interventions progress to successful implementation in this way; where this is the case, npt can aid in understanding the factors that may explain this at both an organisational and an individual level. this focus on the work of implementation and the factors influencing this work was the reason for our use of npt. we used npt to study the ebcd process and the implementation and assimilation of the co-produced interventions in the local context of our study settings. npt was used in two main ways: first, to guide the generation of data at each site (table ) and, second, to inform our analysis of these data and drawing of conclusions related to the similarities and differences in implementing and integrating changes in each of the four study sites. in our analysis we used npt as a sensitising device in our review of the data generated from observation, interviews and researcher process notes and reflections on ebcd activity. npt’s constructs were used to identify and think through factors that may act as barriers to or facilitators of using ebcd and introducing change in the four sites. we also used npt as a structuring device to progress the analysis from identifying barriers and facilitators to linking these, where appropriate, to npt’s constructs and to develop an explanation of the work of implementation in the participating stroke units. phase pre intervention: sites and n = n = n = hours n = hours n = n = n = n = n = n = prom/prems phase post intervention: sites and n = n = prom/prems describes ethnographic observations behaviour mapping staff interviews patient, carer interviews thematic analysis thematic analysis thematic analysis quantitative analysis n = hours n = hours n = n = n = n = n = n = ethnographic observations behaviour mapping staff interviews patient, carer interviews thematic analysis thematic analysis thematic analysis quantitative analysis informs evaluates describes full ebcd small co-design teams combined staff and patient co-design event patient event staff event engaging staff and patients setting upcelebration event npt npt nptnpt figure data analysis for both the evaluation and the intervention (ebcd). methods: the evaluation nihr journals library www.journalslibrary.nihr.ac.uk table constructs of npt npt construct explanation coherence the sense-making work that people do individually and collectively when faced with implementing changes to existing working practices. this would include differentiating new practices from existing work and thinking through not only the perceived value and benefits of desired/planned changes but also what work will be required of individual people in a setting to bring about these changes cognitive participation the work that people need to do to engage with and commit to a new set of working practices. this often requires bringing together those who believe in and are committed to making changes happen. this also involves people working together to define ways to implement and sustain the new working practices collective action the work that will be required of people to actually implement changes in practices, including preparation and/or training of staff. often this entails rethinking how far existing work practices and the division of labour in a setting will have to be changed or adapted to implement the new practices. this requires consideration of not only who will do the work required, but also the skills and knowledge of people who will do the work and the availability of the resources they need to enact and sustain the new working practices reflexive monitoring people’s individual and collective ongoing informal and formal appraisal of the usefulness or effectiveness of changes in working practices. this involves considering how the new practices affect the other work required of individuals and groups and whether or not the intended benefits of the new working practices are evident for the intended recipients and staff table data sources used for process evaluation data source timing linked npt construct ebcd training events for local champions: researcher observations; participant evaluations prior to ebcd cycles commencing coherence non-participant observations of routine working practices, interactions between staff, patients and carers and between staff pre ebcd cycles commencing and post co-design group activity and implementation of ‘interventions’ and changes to working practices coherence, cognitive participation, collective action semistructured (audio-recorded) interviews with stroke service staff pre ebcd cycles commencing and post co-design group activity and implementation of ‘interventions’ and changes to working practices. post co-design group activity and implementation interviews included volunteers, and staff working outside the stroke service who participated in ebcd elements coherence, cognitive participation, reflexive monitoring semistructured (video-recorded) interviews with former inpatient stroke survivors and carers pre ebcd cycles commencing coherence ebcd cycle elements: l patient and staff meetings (sites and only) l joint meetings (all sites) l co-design groups (all sites), celebration events (all sites), including researcher reflections; participant evaluations across ≈ months at sites and across ≈ months at sites and coherence, cognitive participation and collective action continued doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. the create process evaluation differs from some other evaluations of complex interventions in three ways. first, the ebcd approach uses a service improvement methodology in which locally designed changes to services are developed and implemented and therefore variation in the interventions evaluated is likely. second, we evaluated the implementation and integration of interventions across a full ebcd cycle (approximately months) in two sites and across an accelerated ebcd cycle and a reduced time period (approximately months) in two further sites. last, the researchers conducting the process evaluation were members of the core research team rather than independent of that team. these researchers were involved in data collection pre and post introduction of the ebcd approach; they also facilitated staff members’, former patients’ and carers’ work in co-design groups during the development and introduction of interventions in the four stroke units. data sources for process evaluation the process evaluation draws on data generated to evaluate the impact of developing and implementing co-produced interventions on the quality and amount of independent and supervised activity occurring outside formal therapy in the four stroke units. prior to initial data collection in the first two sites, a data collection plan linked to npt’s four constructs was developed. this identified the kinds of data that would be generated through baseline and post-ebcd data collection at each site, and also participants’ engagement with and experience of each element of the planned ebcd cycle in each site. process evaluation data collection also focused on additional opportunities presented by observations of training of staff in the ebcd approach, researchers’ reflections on their own involvement in facilitating each element of the ebcd cycles and researchers’ informal and formal engagement with participants in each site as part of recruitment activity and in generating data through observations and interviews. ethics and consent health research authority approval was gained before the project commenced and this included full ethics review by brighton and sussex research ethics committee (reference number /lo/ ). local capacity and capability assessment was undertaken in each study site and confirmation was gained from each hospital trust. the project was sponsored by st george’s, university of london. the approval letter can be found in report supplementary material . table data sources used for process evaluation (continued) data source timing linked npt construct semistructured (audio-recorded) interviews with former inpatient stroke survivors and carers post co-design group activity and implementation of ‘interventions’ and changes to working practices in the stroke units. these interviews included ebcd participants and stroke survivors who had been inpatients during the ebcd activity and implementation phase coherence and reflexive monitoring study oversight groups’ meeting records and e-mail responses to researcher updates ongoing where these meetings could be established coherence and cognitive participation researcher reflections on facilitating unplanned elements in ebcd cycles, in recruitment activity and in generating data through observations and interviews ongoing informing evaluation and analysis of participants’ engagement with the ebcd process methods: the evaluation nihr journals library www.journalslibrary.nihr.ac.uk consent issues were dealt with in several ways as data collection was varied and included data from patients, their family/friends and clinical staff. we gained overall site consent from the senior clinician (principal investigator) at each stroke unit; this enabled us to have a presence on the unit but not to collect data from individual patients or staff. we were aware of the need for sensitivity, especially during non-participant observations and behavioural mapping, and we used a pragmatic process approach to consent, regularly checking that both staff and patients agreed to being observed. participants in behavioural mapping provided written informed consent. we developed an explanation of the project that was used on arrival and when moving to different parts of the ward; we also displayed a number of posters to describe the project as well as photographs of the research team. we gained individual informed consent for all interviews and behavioural mapping. consent was implied by return of prom/prems and, where local approvals allowed, some patients were asked for their permission to be contacted before they were discharged. see report supplementary material for examples of consent forms. project management and guidance the project was led and managed jointly by fiona jones and david clarke, with site management by karolina gombert-waldron and stephanie honey. a project team of fiona jones, david clarke, stephanie honey and karolina gombert-waldron met monthly with co-applicants glenn robert, alastair macdonald, ruth harris and chris mckevitt for the first years, and every – months in the final year. geoffrey cloud moved to melbourne, vic, australia, prior to the project starting but remained a supporter throughout the project, joining by skype™ (microsoft corporation, redmond, wa, usa) or in person when in the uk. the project team met in person every – months and members attended a proportion of staff, patient and joint events. glenn robert and alastair macdonald provided input into the ebcd and co-design activities; geoffrey cloud provided clinical advice from a local and national stroke perspective; glenn robert and ruth harris supported fiona jones and david clarke with the rapid evidence synthesis; chris mckevitt and the whole group contributed to analysis and interpretation of the empirical findings and report writing. a study steering committee including independent lay members, academics and senior clinicians met four times during the project and provided the project team with review and guidance. approach to public and patient involvement stroke survivors were involved in the initial development of our application, and plans were discussed at a consumer research advisory group that has links with the cardiac and stroke network in yorkshire, which includes stroke survivors and carers, some with national advisory roles. the outline was also presented in round-table discussions with stroke survivors and carers at the yorkshire stroke research network consumer conference. consumer research advisory group members and conference participants strongly supported the proposed research. most expressed a view that active inpatient rehabilitation was central to recovery after stroke but felt that they did not receive the amount of therapy identified in the national standard. carers indicated that they wanted to help with rehabilitation but did not know how, and did not receive training from staff in this area. two stroke survivors and one family member participated in research proposal writing groups, attending meetings in leeds and london. their comments helped the research team appreciate how the collaborative research process proposed may be viewed and engaged with by stroke survivors. patients’ and carers’ voices, experiences and ideas are a central tenet of ebcd. as such, active patient and carer involvement was a feature of every stage. patients and carers took part in separate events and joint events with staff; they formed at least % of the membership of co-design groups and attended final events held at each site to share create findings and discuss methods of dissemination. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. overall, create enabled patients and their carers to work in close partnership with front-line health-care professionals to develop, pilot and evaluate innovations in the delivery of rehabilitation therapy in acute settings. in addition to patient and public involvement in intervention development, a stroke survivor and a carer were involved through their role on the create study steering committee. they participated in all aspects of the study, including a review of participant information sheets, discussion with researchers about conducting observations and interviews with patients and staff, and helped researchers shape the messaging in the ebcd feedback events. patients and carers have been updated about the findings at various stages of the project in various ways, including newsletters, individualised letters and e-mails, as well as from attending feedback events. for an example, see report supplementary material . methods: the evaluation nihr journals library www.journalslibrary.nihr.ac.uk chapter results: rapid evidence synthesis and co-design – priorities for change we first report on the findings of our rapid evidence synthesis (objective ), which soughtto identify and appraise reported outcomes of co-production as an intervention to improve the quality of services in acute health-care settings. the results, published in , are reported briefly below. rapid evidence synthesis (objective ) a total of titles and abstracts were identified for screening; of these, papers went forward for full-text review. eleven publications , – were included in the final evidence synthesis (see report supplementary material for the prisma flow diagram and checklist). included studies were conducted in five countries (canada, england, new zealand, australia and the netherlands) and published between and january . study settings included intensive care units (n = ); inpatient and outpatient oncology services, including breast, lung, colorectal and haematology services (n = ); mental health services (n = ); emergency departments (n = ); an outpatient clinic for people with multiple sclerosis (n = ); and older people’s outpatient services (n = ). a further study evaluated co-design projects in five dutch hospitals; these were conducted in four oncology departments and one haematology department. one study was a feasibility randomised controlled trial of a co-designed intervention. study design was stated in only one of the other papers. the remaining studies utilised descriptive qualitative approaches to evaluate changes in services or to explore participants’ experiences or views, but these were not described in detail. data collection methods included self-report postal questionnaires, ethnographic observations of patient journeys through services and of staff working practices, semistructured interviews with staff and patients (sometimes filmed), focus groups and emotional mapping exercises. data analysis techniques were described in some detail in six , – , of the publications – the focus of most papers was limited to processes to understand and co-design services rather than evaluation of outcomes of co-design or co-production activity; the exception was the feasibility randomised controlled trial. quality assessment ratings largely reflect the omission of detail on research methods, particularly in relation to stating research aims, questions and sampling decisions and discussing data analysis and findings. four studies were rated ++ (i.e. good agreement with criteria) and the remaining seven were rated + (i.e. moderate agreement with criteria). the aim of the rapid evidence synthesis was to identify and evaluate the reported outcomes of co-produced interventions designed to achieve patient-focused quality improvements in acute health-care settings. methods used to understand participants’ experiences and views included observations, process mapping, interviews, focus groups and postal surveys. overall, patients and staff reported positive experiences of participation similar to those reported in co-production studies in the public and health-care sector. , – co-production or co-design projects were effective in generating a wide range of ideas and specific suggestions for improving patients’ experiences across the different settings. however, in most of the studies, a lack of clarity about the implementation doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. of improvements in services and/or evidence of resulting impacts on patient outcomes was a clear limitation. reported service changes and quality improvements are summarised in our published table . in the published report of the rapid evidence synthesis, we identified that reported ‘outcomes’ of the studies could be categorised in three main ways: . patient and staff involvement in the co-production or co-design process . ideas and suggestions for changes to processes, practices and clinical environments that have an impact on patients’ and/or carers’ experiences of a service (and often indirectly on staff members’ experiences) . tangible changes in services and their impact on patient or carer experiences. although the classification of approaches varied, a staged process of co-production was evident across all studies. the majority described patients, carers and staff reflecting on service experience and provision and then working together using participative methods in joint review and co-design activities focused on improving patient and/or carer experiences. level of participant engagement varied across the studies but there was overall satisfaction with the process. use of co-production methods reportedly ensured that patients’ experiences, concerns and ideas for change were captured, presented to and discussed with service providers. active engagement of patients in this way legitimated and gave urgency to service improvement plans; , this was more evident where service managers participated in or actively supported co-production projects. despite evidence of the contribution of co-production activities in generating ideas for patient-focused service improvements, in a number of projects participants expressed frustration at the lack of progression from problem and solution identification to actual quality improvements. – a commonly reported barrier to using co-production approaches in acute health-care settings was a lack of support, resources or managerial authority to bring about structural or environmental changes. – , practical or logistical problems were also identified, which included ensuring that frail elderly people could attend regular co-design meetings. , recruiting and retaining patients and carers through the different stages of projects were highlighted as a challenge in several studies. , – , the findings from included studies highlighted the need to plan for and manage patients’ understanding of what may be a radically different form of engagement with hospital staff, often quite unlike that experienced previously by users of health services, and the need to support staff in this different form of engagement. – a factor linked to more successful co-production projects was the involvement of funded facilitators to manage or oversee projects. where facilitators were involved it was more likely that projects ( ) maintained momentum and were delivered as planned, ( ) engaged and retained patients, carers and staff and ( ) generated concrete examples of areas in which patients’ or carers’ experiences could be improved. , , , changes in service organisation, care environments and in patient and carer experiences occurring either during or closely related to co-production activities were reported (see table ). however, none of the studies formally evaluated whether co-production or co-design as a way of working had been sustained, or whether improvements made as a result of such approaches were sustained over any length of time. last, no cost–benefit analyses were carried out related to the reported outcomes in any of the studies. only one study reported a cost analysis of co-production methods by comparing the cost of an accelerated ebcd approach with that of standard ebcd. the findings indicated a reduction in costs with the accelerated approach, which was linked to a reduction in the cost of producing the trigger film (a key stage of full ebcd). the cost of facilitating the ebcd process was quantified; in this study, over half of the costs incurred were the salaries of local facilitators. results: rapid evidence synthesis and co-design – priorities for change nihr journals library www.journalslibrary.nihr.ac.uk the limitations of the rapid evidence synthesis were as follows: l we excluded broad search terms relating to patient participation, patient centredness, service improvement and clinical microsystems, including only search terms that we anticipated were likely to identify research studies reporting on the use of recognisable and structured co-production or co-design approaches. it is possible that the narrow focus of the search terms used in the rapid evidence synthesis meant that we did not identify research and evaluation of co-production projects in the health sector reported using some of the alternative terms described above. such literature may have been consistent with or challenged our findings. l we concluded that the rapid evidence synthesis identified a lack of rigorous evaluation of effectiveness and cost-effectiveness of co-produced interventions in the acute health-care sector at both the service and the system level. health services, whether public or private, operate within increasingly severe financial restraints where funding for quality improvement work is limited. without robust critique, evaluation and evidence of the co-creation of value, there is a danger of co-production becoming another management fad or fashion, with the meaning of the term itself appropriated and co-opted but no longer ‘co-produced’. we recommended that future studies should evaluate clinical and service outcomes as well as the cost-effectiveness of co-production relative to other forms of quality improvement. evaluation of potentially broader impacts on participants’ values and behaviours should also be considered. co-design: priorities for change we set out to understand both the experience of taking part in ebcd (patients, staff and carers) and whether or not ebcd could be used successfully in both a full and an accelerated form. in this section we present the findings from qualitative data sources (fieldwork and interviews) about the priorities for change developed through ebcd. where possible and relevant, we include photographic evidence of the issues that drove priorities and the areas in which changes were made. in chapter we describe the impact on activity of implementing the new co-produced interventions/ improvements and summarise the contextual data about activity and patient experience pre and post implementation with reference to quantitative data sources from behavioural mapping and prom/ prems. finally, in chapter we present findings relating to the experiences of ‘implementation/ engagement’ and our process evaluation informed by npt. there is inevitable overlap between the data collection methods we used ( ) to underpin the ebcd process and ( ) in the evaluation study. as a result, we have synthesised our findings across chapters and to address all five of our evaluation research questions, and we conclude with a discursive commentary addressing each of the research questions in turn. figures – illustrated how the multiple data sources were utilised as well as the interaction between ebcd and the evaluation. the two stroke units taking part in the first stage and full ebcd are referred to as sites and . the two stroke units taking part in the second stage and accelerated ebcd are referred to as sites and . we focused on supervised or independent social, cognitive and physical activity, and used an umbrella term of ‘activity’ for anything that patients do with or without help, however small, outside individual one-to-one scheduled therapy sessions. ideas that drove the changes at sites and , filmed patient interviews carried out pre implementation were synthesised to produce a composite film shown at all joint events. staff interviews and ethnographic data were also analysed and contributed to the data corpus; these were presented at separate staff and patient events at doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. sites and . these data underpinned and drove the discussions, which led to the priority areas for co-design groups. the ideas generated were largely similar across all four sites and focused on space, activity and communication. with minimal local variation, ideas were revised or shaped at the joint meetings and then interpreted and adapted in co-design groups. space i often thought, on the stroke unit, it would have been nice to have a little group where they all could be interactive with each other instead of sitting staring at the walls . . . make the day spread out a bit better . . . i was always sitting watching things and thinking they could have a little group in the corner where they could be doing little things. carer, site , pre the above quotation illustrates the inter-relatedness of space (environment) and activity, which became increasingly clear during the ebcd process. the four sites differed in physical layout, colour scheme, room size and use, and available social and outdoor space. however, across the sites, staff members’, patients’ and family members’ suggestions to improve the environment were very similar. site had no shared space (day room) in which patients and visitors could meet, and visitors were cramped by the bedside. site had a day room but it was used mainly for staff meetings and equipment storage; this was replicated at site , which had a garden but it was accessible only through the day room, which patients did not use. at site , the day room had become a storage area for wheelchairs and specialist stroke chairs; another seating area was routinely used by staff for taking breaks and storing cleaning equipment. our observations confirmed the restrictions posed by limited space and the impact on patient use; there was little or no space or opportunity to socialise in groups with peers or visitors. this issue was compounded by areas that could have been used by patients and visitors instead being used as storage for clinical items. space and furnishings appeared to affect patient and carer morale; this issue was depicted in data from all four stroke units, although less so at site , but generally environments were felt to be uninspiring: and it looks very much like a hospital environment, i think the colours are very hospital-y, i think the decor is a bit shabby and when you’re spending, when you spend, you know, you’re spending months in this hospital sometimes it just feels like there’s nothing that looks particularly homely. patient, site , pre restrictions on activity caused by the environment were also noted across all sites, as illustrated by how the way in which a ward is set up can limit communication between patients: when she [the carer’s wife] first went in . . . a really elderly lady was in the next bed and she couldn’t communicate at all. if they could have rotated the beds round so that the ones who could talk to each other [were next to each other], rather than have to talk over them to another patient, that would have been better for them. carer, site , pre patients and staff felt that space could be repurposed to allow more opportunities to move about, play games and socialise. they suggested getting rid of clutter in therapy gyms, day rooms and corridors. the restrictions on activity caused by equipment storage was evidenced in observations (figure ): the corridor is cluttered with table, trash bins etc. so we have to take turns [to pass] . . . the corridor is cluttered with a hoist, wheelchairs, various trolleys and trash bins. field notes, site , pre results: rapid evidence synthesis and co-design – priorities for change nihr journals library www.journalslibrary.nihr.ac.uk in addition, the space around each bed was limited, and frequently tables were used for clinical equipment such as wipes or syringes, leaving little room for personal items (figure ). frequently staff complained about the ward not being fit for purpose and restricting independent activity: on the movable table next to his bed, i see a little jar with water and a cup half-filled with orange juice, tissues and a blue folder like the ones used for patients’ notes. on the bed side table there are two framed pictures – one is at the front and partially covers the other. the rest of the table is occupied by medical equipment. field notes, site , pre figure equipment storage in corridors at site . reproduced with permission of fiona jones, university of london, personal communication, . figure typical bed space and décor at site , described by patients and staff as cluttered and uninspiring. reproduced with permission of fiona jones, university of london, personal communication, . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. i don’t think this ward is suitable for stroke rehab, we need a bigger ward definitely. we’re always falling over stuff. i think because, you know, a simple question of, ‘can i go to the toilet?’ we’ve got to move everything . . . so the poor little patient’s waiting an extra , minutes and they might have peed themselves so that’s not beneficial to them because that’s just promoting incontinence and, you know, they’re on a rehab ward. staff, site , pre the benefits of the bedside having a personal feel developed as a theme through our observations and interview data. we observed that when personal items were around the bedside, staff tended to interact in person-centred ways to a greater degree, asking the patient questions about a family member or a photograph: i noted that the patient in bed had a different bedside than other patients in the bay, as the family had brought in things that were important to her into the ward. she was keen to show me everything they had brought in, and felt it was immensely therapeutic to be able to look at pictures of family instead of the blank wall – she said she had spent time gazing at them and thinking about each of them. field notes, site , pre additionally, some carers had done their best to enhance and personalise the spaces around their relatives who were unable to get out of bed: i took photographs and pictures and put them all on the wall to try and brighten it up, because it was just horrible, it was a horrible ward. carer, site , pre the sense of being trapped in the ward and the lack of light seemed to add to the feeling of dreariness and loss of connection with the outside world: [. . .] is sitting in bed. the lights are off and the blinds down. the room is quite dark. she is sitting in silence. the tv is still positioned in front of her but it’s off. field notes, site , pre the necessity of having somewhere else to go apart from the bedside became a strong priority for change: a table maybe in the middle of the ward to bring people together. carer, site , pre it would have been good to mix with other people, so you can get to know them. patient, site , pre one carer at site mentioned that she struggled when using a wheelchair to take her husband to the hospital café, which was a considerable distance away, and that she would have preferred to have been able to go for a drink and change of scenery to a nearby day room. she also felt that being in the day room, rather than off the ward, would have made it less likely that her husband would miss therapy sessions. when space was available, it was often used only by staff, and the impact on activity was evidenced at sites , and (site had no day room) (figures and ): i think the day room has, has been a bone of contention in terms of the nurses are upset they can’t use it as a restroom. the therapists and everybody else view, their view it’s not a restroom, it’s a day room, how do we try and accommodate everybody? it would be nice to have a bit more office space for everybody else, it would be nice to, you know, kit out the gym a little bit better so you could use it more. the garden i think, you know, we don’t use our garden space enough, yeah. doctor, site , pre results: rapid evidence synthesis and co-design – priorities for change nihr journals library www.journalslibrary.nihr.ac.uk activity i think [being a patient in here] it must be incredibly and utterly boring, i think, i mean i think the odd occasional therapy session that they get from speech, ot and physio, i mean that would amount to maybe, what, two and a half hours, if that, maybe three. staff, site , pre all of our data demonstrated limited activity opportunities beyond those provided in scheduled therapy sessions. during over hours of pre-ebcd fieldwork across all sites, we saw very little evidence of patients independently practising activities (either games or prescribed exercises) and minimal or no involvement of other agencies such as volunteers or community groups: interviewer: can you give me any examples of some activities that you saw other patients doing on their own? figure day rooms at sites and , which tended to be used only as meeting rooms for staff. reproduced with permission of fiona jones, university of london, and david clarke, university of leeds, personal communication, . figure day room at site , which was used for storing specialist chairs and wheelchairs. reproduced with permission of david clarke, university of leeds, personal communication, . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. patient: no, nobody. i never see anybody doing anything on their own. patient, site , pre patients and staff highlighted the boredom and lack of stimulation, especially at weekends; this was corroborated by our fieldwork, which also took place at weekends. none of the units provided a -day therapy service, and interviewees felt that weekends were quieter, except at site ; here, the patients interviewed suggested that there was little difference between weekdays and weekends, in that they found the days equally long with little to occupy their time except waiting for family and friends to visit. at this site, all patients interviewed complained of being bored in their free time between care tasks such as washing and dressing, and scheduled therapy sessions. apart from visitors, the patients did not report much engagement with other people or much participation in physical or cognitive activities. at site , ots and pts worked on saturdays but they spent the majority of their time assessing new patients on the adjacent hyperacute/acute unit. a stroke rehabilitation assistant worked on saturdays and sundays on the rehabilitation unit but focused attention on those who needed additional therapy and did not provide alternative social or cognitive activity opportunities: ‘nothing happens’, says a health care assistant [hca]. ‘weekends are long’, comments another hca. ‘weekdays are very busy – they [patients] have got everyone coming into their rooms. [at] weekends, they only see us. they get their care, obviously, but that’s it. it’s like – what happens now? do i count down to monday?’ she says looking down at her wrist. field notes, site , staff event at all sites patients emphasised that they would have liked to have been more active and perhaps to be encouraged to play a game or sit with other patients in the bays or in a common area: it would have been good to mix with other people, so you can get to know them. patient, site , pre observational data in particular highlighted to us how patients’ activity levels were influenced by staff members’ structures and routines. inactivity was most marked between routines such as mealtimes, getting washed and dressed or receiving therapy. patients tended to describe how their day was structured mainly around mealtimes: i’d get up . . . they came round and they made the bed first . . . they gave us a cup of something or other to go with it and then they got on and did their own thing, other people, you know, and then hopefully [you were] one of the first ones, if not . . . . was the latest i ever got done [washed and dressed]. it should have been done before o’clock you know . . . then they [the nurses] said ‘well, you know, basically you’ve got to get out the bed and sit at the side of it’ . . . then we had breakfast, which we just got at the side of the bed. then i tried to get some written work done [speech and language therapist exercises]. and then it’d be lunchtime and you all come round with the lunches and stuff and it’s fine, but then, then they just left you at the side of the bed and after lunch, you know. so there’s only speech therapy and physiotherapy . . . and then it was teatime and they put us all our stuff [food items] out. patient, site , pre there was overwhelming agreement in staff interviews that patients had the potential to be more active than they were. staff also acknowledged that this was hindered by their highly routinised work. anything more than getting through a list of tasks was a bonus: after so long then people [nurses] get to know, ‘this is the norm, this is the routine, this is what happens, you come to work, you do your jobs’. we’ve even got a list of jobs that you do, and not on any of that list is, not one that says, ‘spend time with the patients to talk to them, or do games with them or anything,’ it’s all about getting things ticked in a box. staff, site , pre results: rapid evidence synthesis and co-design – priorities for change nihr journals library www.journalslibrary.nihr.ac.uk the same staff member felt that as patients conformed to routines they became less likely to express their own views and ideas: hobbies and things, i think they probably don’t get the opportunity that often to do what they particularly like to do, we’ve got things that we can offer, like chess, draughts, puzzles, magazines, there’s the volunteers that come round with newspapers, but that’s sort of organisationally based as well, they don’t come at specific times. so, i think, to fit in something that, if they had a specific time to do it, if they said to us, ‘i’d like to do this at this particular time’, i think there are ways that we could try and accommodate it, but i think people come into hospital and think, they just conform to that routine of when the meal times are and that quite rigid set routine, and you find that they just seem to go along with it and don’t then tell you, ‘well, actually, i prefer to do this at this time’, it’s almost like they seem to lose their voice. staff, site , pre promoting activity was not visible to any extent in many staff routines and structures. for example, as was observed, activities were not mentioned as part of the nursing handover: all staff were following the handover of the night nurse. it wasn’t until the handover had happened did they look at the patient and have any interaction, asking questions like ‘did you sleep last night?’ it was often the lead nurse that did this, he went to the patient and shook their hand, smiled and said ‘hello’- most seemed to recognise who he was. hardly anyone else interacted with the patient. i heard no hand over of information about what the patient could do for themselves, or any aspect of their recovery, or activity. field notes, site , pre all staff members interviewed had concerns about patients being bored and not having enough stimulation. some of the reasons cited here overlap with ‘space’ as a priority area but illustrate the restrictions given by staff as reasons: there is nothing for them to do. [. . .] we need something in the way of entertainment for patients [. . .] they need something more. staff, site , pre exploring in staff and patient interviews what could be done to provide more activity opportunities generated many ideas: i would just love us to have a bit of money to use at our own discretion . . . on therapeutic items. because you can get lots of things that you can do, unilaterally, like one-arm technique to do like cross-stitch or something, like the stands and things that you can get and we don’t have anything like that. [. . .]. we’ve got very, very dated equipment. staff, site , pre staff also highlighted concerns about their unit, which was supposed to enable rehabilitation and recovery, and the negative impact of the structures, routines and atmosphere. this was compounded by an overall impression that staff were busy and had little time for anything other than clinical tasks. during observations, staff would frequently mention that they were busy, and during interviews members of staff reported that they were too busy to organise activities outside the normal therapy time: yes. challengingly busy, but that’s inevitable. you know, obviously many of the patients are either lying or sitting in bed, not active. once they’ve had their needs either addressed, or they’ve managed themselves, which is less common, they are spending a lot of time inactive. there’s, i guess, overall i find there’s very little social interaction with patients, very little chit chat, or chatter. staff, site , pre doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. our observational data largely validated the perspectives of staff, patients and carers. in addition to the comments made in interviews, informal staff comments during observations indicated a shared perception that social, physical and cognitively stimulating activity outside therapy on stroke units had decreased over time rather than increased. although there was a profound awareness that both scheduled and unscheduled activity needed to be increased and although there was a strong will for this to happen, there were some differences across sites in how some staff groups used their time. at site , all staff broadly acknowledged the impact of ‘downtimes’ such as weekends, but we saw little attention paid – or suggestions given – to patients regarding what they could do outside scheduled therapy. at site , although all staff routinely talked about how busy they were, there were late morning, post-lunch and post-evening meal ‘downtimes’ during which staff would congregate in a central area and chat. at sites and , observations also indicated high nursing workloads and levels of patient dependency that left little time for staff to engage in activity with patients. however, when the units were fully staffed and less busy, the same behaviour was evident; there was a sense that when the routine care tasks were completed staff were entitled to stop and rest until the next set of tasks required completion. although there were some exceptions at each site, promoting and supporting patient activity was not part of the ‘routines’ for most nursing staff. communication the final issue was communication. there was an overall impression of missed opportunities to enable activity reflected in our ethnographic observations and the limitations of communication with staff was raised by patients and families. each unit constituted a specific type of space where communications were structured around the tasks at hand, and outside this communications were related to information- giving (e.g. feedback on progress and prognosis), with very few ‘small-talk’ interactions. unstructured phatic communication was not the norm. we saw very little evidence of personal and social interaction between staff and patients, or between patients; when this did happen, patients commented on how much it inspired or encouraged them to do more. communication between staff and patients was again shaped by structures and routines, and the lack of interaction outside those times was noticeable. patients also felt that communication could enable their activity and wanted more specific ideas from staff, and feedback on what they could do independently or with a carer. patients and families had a shared perception that the staff group were very busy and had limited time. our observational data largely supported these comments and we rarely saw anything other than task-orientated interactions. as noted in field notes, there was also a lack of ‘chatter’ between patients and members of staff, which created a rather quiet, uninteresting atmosphere: hardly anyone else interacted with the patient. i heard no hand over of information about what the patient could do for themselves, or any aspect of their recovery, or activity. hca [health-care assistant] walks in and push her trolley next to him. she records some routine observations of pulse and blood pressure. they don’t talk. he closes his eyes while she performs the procedure. the group moved on without speaking to this patient. there was no other exchange of information other than about his peg [percutaneous endoscopic gastrostomy] tube. a nurse came in to attend to the patient in bed , the curtains were pulled but i heard no chatter. field notes, site , pre it was not always what was said but what was not being said. one patient stressed the importance of ‘good morning welcomes’ (patient, pre, site ) and others mentioned the importance of staff introducing themselves to patients: i just found it horrible when no one even says a good morning, but they are discussing my condition . . . even down to saying things like ‘i am waiting for a letter from the council’. it feels like your private life is results: rapid evidence synthesis and co-design – priorities for change nihr journals library www.journalslibrary.nihr.ac.uk not private at all . . . because i have had a stroke you lose everything, dignity, the ability to talk and walk, it feels horrible. patient, site , pre there were positive examples of communication. those members of staff who spoke to the patients ‘as a person’ stood out during our ethnographic observations, and some of them were explicitly mentioned during the interviews: she [health-care assistant] just made the unbearable bearable, she really did. we all hated the weekends when she wasn’t there, you’re just bored anyway and there was mostly agency staff at weekends and, you know, it was just, we just so missed having her around. she just, you know, she used to say to us like ‘we’ll laugh together and we’ll cry together’, you know, and she was just amazing. patient, site , post patients and families gave very few examples of knowing how to be more active; they could not remember being given advice and we rarely witnessed communication that would encourage activity: it was only the second day, as soon as you got to the rehab ward you wanted your laptop, didn’t you, to check e-mails? [as] the relative, you think, ‘oh, should i be doing that, will it harm him any more?’, so i went and asked the sister and she was very enthusiastic, ‘oh yes, anything that will stimulate him, bring it in’, so she was really encouraging . . . you feel you need permission to do these things. carer, site , pre overall, our observations and experiences of communication varied, depending in part on how busy staff were or on the staff who were on the unit that day. however, patients felt that there was inconsistency in receiving information and in staff members’ understanding of their needs: i mean the first day i got there [. . .], it’s just like, ‘this is your bed, get your clothes off and try and get into bed’. you’re not helped to even get in the bed and then i remember, i had to call, i went to call a nurse, one of them said ‘why didn’t you call me by the bell?’ i said, ‘because all i was told was, we’re going to get weighed and straight into bed’, no one said a word to me, so i didn’t know anything, so you’re left in limbo. and you feel like a nuisance and don’t ask. and you shouldn’t have to be asking, you know. i remember that night crying and one of the nurses had to come and comfort me because i said i want to go home, i’d rather go home and not be able to do nothing, because that’s how i felt. patient, site , post we found alignment between staff and patients/families on many issues relating to communication. the sense that there was ‘no time for chat’ came through in many staff interviews, which resonated with patients’ and families’ interviews and our observations. talking positively to patients and wanting to get to know them as a person was not necessarily considered part of the ‘work’. staff reported that they felt limited by time and clinical priorities: i just feel like there’s just limited time, like i’m sure everyone would love to sit down and have a conversation but they’ve got so much to do and i think that probably makes people feel more, more stressed and probably more afraid to get into like a conversation because then you have to be rude to get out of it, so maybe if you feel like you never get into it then you don’t have to be rude in that way. staff, site , pre in addition to the lack of social communication, we observed, without exception and across all sites, that notices by patients’ beds described information for the purpose of conveying clinical information between staff and very little about personal needs, experiences or activity goals or plans. the sense of ‘the person’ was absent in this information (figure ). doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. staff cited many challenges with finding time in their existing schedules to prompt, set up and participate in activities with stroke survivors. these comments were mentioned by all staff groups but more commonly by nurses, who did not appear to see ‘increasing activity’ as a key nursing function. however, the challenges of doing anything other than routine tasks contrasted with the following comment from one staff member: i do make a massive effort with everybody, i try to give them a bit of my time even if it’s me sitting down with them for minutes, but i mean there’s no facilities to do much else with them than talk. or if you do, you’ll probably told off for sitting down and talking to them. we [health-care support worker and a student nurse] were getting [patient name], up one morning, he’d just come onto the ward, anyway we were asking him about his life and, you know, joking with him because he had a really good sense of humour, he was only , and he really enjoyed that, and we were getting him up, because he was like ‘i’ve been so bored since coming in here’ and he said ‘thank you for you two coming in and cheering me up and making a difference’. and then one of the nurses popped their head in and was like ‘less of this and more work’, and i was like ‘have you actually listened to what he was actually saying to me? we were actually discussing his life with him’. staff, site , pre in conclusion, although these units were delivering on national targets for therapy provision, the extent of patients’ inactivity outside scheduled treatment was concerning. this was compounded by spaces that limited activity opportunities and by staff routines that were structured to ensure that caseload was managed but not to promote activity. communications between staff and patients were task oriented and not patient centred, so there were few instances of focusing on what patients would want to – and could – do on their own. there was a small number of instances of activity promotion (e.g. the art group at site ), but in the main there was a clear mismatch between staff members’ understanding of the need for and benefits of increased activity and the current service provision in these stroke units. participation in the ebcd process at all sites led to the identification of and agreement on priorities for improvements that it was considered would lead to increased activity. the impacts of some of these changes are summarised in chapter . figure a typical method used at site of conveying abbreviated clinical information written on whiteboards above beds. reproduced with permission of fiona jones, university of london, personal communication, . results: rapid evidence synthesis and co-design – priorities for change nihr journals library www.journalslibrary.nihr.ac.uk chapter results: impact of changes impact of changes: qualitative findings – staff, patients and families in both forms (full and accelerated), the ebcd process facilitated some observable changes to the nature and use of communal spaces, to structured therapy-led group activity and to increasing activity opportunities at the individual and social group level. whereas the impact of changes in activity by improving access to more groups or in space by having new or repurposed social areas was tangible and visible, less observable change was seen in communication, and this resonated with the findings of the pre-implementation analysis. this was despite several initiatives developed by the co-design groups, including new codes of conduct, changes to staff induction and renewed emphasis on communication in team meetings. our data showed that interactions with most staff remained largely ‘task focused’. this raised our awareness of the numerous and sustained approaches needed to make changes in communication. the challenge of changing ‘how’ staff interacted in a prevailing culture of a highly medicalised clinically led environment remained and, findings from our post-implementation interviews and our observations substantiate this. beginning with space as the first priority area, we draw on multiple sources of qualitative data to explore the impact of changes. this section also includes an analysis of interviews with patients and carers who had not taken part in the co-design process but were patients on or visitors to the ward during or after the co-design. for greater insight we also explored whether or not these interviewees would report similar (perceived) changes to those reported by the patients, carers and staff who did take part in co-design. space i mean the clock thing was something that really struck me. you know, you kind of assume that everyone has a watch or a phone or something so everyone knows the time but i guess, you know, people don’t and people of a different generation maybe don’t have a phone or whatever or you know. staff, site , post changes in the stroke unit ‘space’ included rethinking and repurposing existing spaces (all sites); repainting corridors and bays and creating and introducing artwork in the stroke unit (sites and ); reclaiming, repainting and equipping day rooms as spaces for activity and patient, family and volunteer use (sites , and ); personalising bed spaces (site ); enabling greater access to kitchens and bathrooms; and introducing a tool to get to know patients as people: the ‘a little something about me’ board (site ). different priorities did emerge. at site , for example, co-design groups prioritised creating the feel of ‘bringing the outside in’, and all of the bays were redecorated with a theme such as lavender or the seaside. paintings or prints were put up; the walls were painted; digital clocks were put in each room visible to every patient; and hooks for visitors’ coats, photo-hangers and extra shelves to declutter patients’ bedside tables were added (figure ). our interview and observation data support the positive impact that these changes had: it is a picture of a beach and a cave, similar colours to the photograph from cornwall that is on f’s wall. he [family member] also shows the photo to f and tells her this is very similar. she smiles. field notes, site , post he also uses his photo-hanger. there are get well cards and photos. field notes, site , post doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. at site , the unit initially agreed that changes to the colour schemes and appearance of the unit should be made and worked with an artist to do this, but the changes were put on hold when estates raised concerns about costs, suitability and access. corridors in the site remained dark and unwelcoming, in stark contrast to the bright, accessible and very well-used refurbished day room on this unit. site also worked with a local artist to redesign the colour scheme in the newly refurbished day room, and new communication about use of the space was developed. site already had light and bright corridors with some artwork in place, and the bedside curtains had local scenes and landmarks imprinted on the materials, so these areas were less of a priority for co-design groups. all of the wards had emphasised creating a common space for patients and carers. site had a day room but it was used for wheelchair and seat storage. however, as the project began, the chairs were removed and the space become usable for individual and group activity. at site , a seating area (for four to six people) facing floor-to-ceiling windows looking out across the main car park and beyond to the hills surrounding the town was also repurposed. this area had previously been used mainly by staff taking their meal/rest breaks and for a display of stroke association materials. during the ebcd process, a magazine and newspaper stand was added, jigsaws were donated and several house plants were placed on an accessible window ledge. this space was used regularly by patients and carers both ad hoc or opportunistically and as part of planned therapy-linked activity, for example getting patients who liked gardening to play a part in watering and caring for the plants and encouraging patients with minor cognitive impairment to work on jigsaws with other patients (figure ): we had a gentleman who was really disengaged, he wouldn’t really engage in therapy, but i gave him the job of watering the plants [in the window area] every day and he started doing that and apparently he did better in therapy after the engagement sessions. one of the physios said ‘i wasn’t up for this woolly hippy stuff [create] that you lot are up to but, i could see how it worked, it worked really well’. staff, site , post figure one of the new colour schemes in a four-bedded bay at site . clinical items were put on new shelves behind each bed, local art work was put on the wall, and a photo-hanger was put up beside each bed. reproduced with permission of fiona jones, university of london, personal communication, . results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk another carer mentioned the value of having the window seating area as an alternative to the day room(s): i think we did one or two [jigsaws] in there but people don’t all go in the dayroom you see, people tend to like the corners [the window seating area] there and people tend to join, you’ve got a nice view over the hills, you can look over the car park and you used to love sitting by the window and looking out and seeing what were going on. carer, site , post the patients and carers at site appreciated the newly refurbished day room. one patient, who had been on the unit before the room was available but had since seen it as part of a co-design group, felt that it would give patients a choice about what they could do and give them a change of scenery: they [patients] can go there [to the day room] and there’s people there that will have had the same as they have had, and you can either talk to them or not talk to them . . . they can go to the dayroom and read a newspaper . . . or speak to somebody . . . but it’s just getting out of that bed space and moving. [previously, when he was on the unit] we had a choice – sit in our bed space or walk to the end of the ward, or walk up and down and that was it. patient, site , post the room was used for both scheduled and unscheduled activities. staff reportedly encouraged patients to go in and participate in newly introduced groups. these groups included a regular sunday lunch club run by volunteers and a breakfast club and a baking club run by the ots. other groups were also held there from time to time, such as music groups and bingo (figure ). at site , observations showed how patients used the new common area. this site previously had had no dedicated space for therapy-related independent practice or social interaction. prompted by the figure new repurposed seating area at site . reproduced with permission of david clarke, university of leeds, personal communication, . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. co-design groups, the end of one corridor, which had been used to store equipment, was transformed into a new open seating area (figures and ): i moved through the ward to the new social corner where i met patient f. who was doing a puzzle. someone had brought it in for him, it was not his own he told me. he told me he thought the ward had become more inclusive over the time he was there. and he said he liked the social space. field notes, site , post redesigning the space also involved taking stock of what was available to support increasing patient activity, and opening up areas previously inaccessible to patients and visitors: yeah because there’s patients’ relatives, instead of coming and ask you now, they go there, they make a cup of tea, they can make a cup of tea for their relative so there’s no point in going to the kitchen because they’re not even allowed, or sometimes we’re busy, you say oh i’m busy, but now they just walk straight and do, yeah, and do that which is good. staff, site , post at all four sites, redecoration involved decluttering and rethinking how the space could be used. at site , funds were raised to redecorate the shared day room and add a new kitchen area for making drinks and snacks. a local artist painted the walls to make the space look less like a staff meeting room. figure new social space (day room) used for scheduled and unscheduled activities at site . reproduced with permission of david clarke, university of leeds, personal communication, . figure end of a corridor at site , previously used for storing chairs and hoists. reproduced with permission of fiona jones, university of london, personal communication, . results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk at site , the co-design groups explored a range of options for making ipads (apple inc., cupertino, ca, usa) more accessible; towards the end of the project, purpose-built flexible stands on wheels were purchased, which meant that ipads were secure but could be used both in therapy sessions and independently (figure ): i think it’s great. those rooms, that [ward d day] room is particularly good because, you know, when it was full of chairs we couldn’t even go in there. now it’s, now it’s a free resource we’re lucky to have it, you know, and anything is better, yeah, i think it’s great. i think those pagers are great, the ipads, you know, they’re great on the stands, wonderful. patient, site , post the changes to how the space was used also had an impact on communication. having familiar home items in the space to make it more homely and placing a photo-hanger by patients’ bedsides contributed to conversations and to learning about the patient as a person: i said that it is impressive as a fireman he must have saved many lives, and as an electrician bring light to people’s lives. patient in bed says ‘and electric shocks’ and he laughs. we talk about their photos in the photo hanger. patient in bed has a holiday photo from germany, a river, in his photo hanger. it is black and white. he said he went with his wife and it was a long time ago. patient in bed is very good with names, i realised this before. he knew the names of members of staff when man in bed didn’t. he asked him again about someone’s name and he knew it. i tell him he is very good with names, the man in bed agrees, says yes, isn’t he. i spent about minutes with them. the patient in bed asks me to pass him figure new space at site , now an area for patients and families to meet and socialise. reproduced with permission of fiona jones, university of london, personal communication, . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. his blanket, it is red and cosy. he says it is very nice, he is a bit cold. his granddaughter brought it for him. his grandson used to play rugby and they went to watch him on the weekends. he was very good he says. they say thank you and say it is very nice of me to put the programme on. they don’t want a newspaper to look at whilst waiting for the rugby to start. field notes, site , post at site , a therapist commented on how the ‘a little something about me board’, which contained personal information about previous hobbies, activities or work that patients wanted to share with staff, had shaped the therapy activity she had decided to pursue with a patient: i was planning some upper limb work with this chap but he was a little hard to motivate. i noticed that the board said was a keen domino player, so that’s what i suggested to him, we did the session focused around playing dominoes, something that he liked to do and we still did the upper limb work, so that’s something that’s happened because of the project for me. staff, site , post the nature of the changes made to space meant that these were most visible and generated the majority of positive comments from patients and staff. we were also able observe the impact that the changes to spaces and the different ways space was being used had on patient activity. staff members’ comments were orientated around the enabling impact of the changes, as well as the change in aesthetics, which gave a more homely, welcoming feel: so i think the ward is different, i think definitely things look a lot better and a lot more inviting in the environment it’s engaging in, and i think that, that makes a difference in how we communicate on the ward and how we interact with that patient, because there’s stimulus to talk about, there’s pictures now on the wall to talk about and engage and help patients find their way in colours that help, signpost where they’re going and it’s something to talk about, a neutral that we can talk about that everyone has an opinion on and it doesn’t often require a lot of complex language as a speech therapist it’s nice to have figure new mobile ipad stands used at the bedside at site . reproduced with permission of david clarke, university of leeds, personal communication, . results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk something that people could gesture a thumbs up or a thumbs down, they can nod or shake their heads to say that they like a painting or a photograph. so in that respect i think that’s really helped how the ward, the ward interacts and changes. staff, site , post activities changes initiated by activity co-design groups included regular visits from therapy dogs (sites and ); new activity boxes for every bay (sites and ); increased structured group and individual therapeutic activities (all sites); and increased volunteer and external group supported activities (music, gardening, massage, pet therapy, art and crafts, social sunday lunches) (all sites) (figure ): we have huge gaps in the day where your patient’s doing nothing, they’re bored, they become institutionalised, so with these extras, like your volunteers coming in, you’ve got various groups, you’ve got your cooking group, your breakfast club, your lunch club, it just makes for a, well it’s a more positive experience isn’t it, well i feel it is. staff, site , post the co-design process often led to discussions about how to connect with community and voluntary groups to a greater extent. at site , for example, a family member of one of the patients worked as a local artist. together with her colleagues, she applied for funding and organised art workshops on the ward at the weekends. at site , the patient experience office worked with the volunteer co-ordinator to train new volunteers to provide mealtime and social lunch support following discussion with the co-design group members. in addition, the local university’s music department was contacted, which led to two or three singers coming to the unit every weeks to sing songs both they and the patients had chosen. at sites and , co-design groups, aware of some of the activities that had been developed at sites and , utilised this learning much earlier by connecting with community organisations, and at site a programme of concerts by local choral and music groups was organised. observations showed the impact of these activities: one of the ladies told me she had to cry as she found it really moving and said in a good way. she also walked past the group again later and said that it was really nice and she smiled. field notes, site , post figure new activities (art groups and therapy dogs) available at site . reproduced with permission of fiona jones, university of london, personal communication, . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. additionally at site , a retired pt and ex-patient had begun to hold fortnightly ‘exercise groups’. the feedback she had received was positive and our observations showed that the groups had almost got ‘too popular’. many patients wanted to attend but there was limited space available, even in the repurposed day room. at site , a new breakfast group was set up and by the end of the co-design group activity it was running days per week. this group was led by therapists and supported by nurses, who continued the activity at weekends when therapists were not present. the co-design group initiated other planned (arts and crafts groups) and ad hoc events (open afternoon, evening meal with other stroke survivors, a small group watching a favoured television programme) and some patients and families noticed the impact of these: i do see evidence, psychological evidence [of being willing to engage in more activity] . . . and i also think patients are doing more now. patient and family members, site , post despite an increase in the opportunity to access activities, our observations showed that there were still long periods of time when patients were inactive. opportunities to access activities were lost for patients who needed help to get out of bed: i think certain members of staff are really great at getting patients out of bed and really proactive with that and will look at what patients are signed up to do, whether it be therapy sessions or whether it be something like the reading group which has gone on timetables. and then there are other members of staff who don’t look at the timetables at all. staff, site , post co-design groups wanted to focus attention on those patients who were unable to get out of bed and attend groups by designing and providing new activity boxes that could be brought to patients’ bedsides, but we rarely saw anyone using these: patient in bed is alone. she is lying in bed. she is not very mobile, but there is nothing else e.g. radio, tv for her. she always smiles when she sees me walking past. the patient, gentleman, , is sitting alone. he is saying ‘no no no’ as he quite often does. the doctors are standing around the nurses’ station. of them are looking on their phones, talking about something else, work unrelated. field notes, site , post however, observations and interview data also supported the notion that a small number of patients did not necessarily want to engage even when increased activity opportunities were provided. their pre-stroke behaviour, activity and leisure preferences were factors in their willingness to participate in what was offered: there was various things going on that the volunteers organised. there was afternoon teas and stuff like that but you’d no desire to go had you? carer, site , post members of staff reported that they were more aware about the activities on the wards post implementation. this was also the case for members of staff who did not take part in the co-design groups: there, everything, everything is there, everything is there, i’ll go there and give it to them if they are sitting down and there’s nothing to do, give them something to do, even if it is just to practice writing their name or practice signing, i’ll give them a piece of paper and pen so that they can practice and write. [. . .] yeah, sometimes you think, you can see they want to write, do you want to write, you see them, sort of, practising, oh i don’t know how to write my name again, ok just practice, just keep like that. [. . .] well before we, yeah now we are doing it but before, as i said, before we were not, no, we are not doing results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk all these sort of things so, but now i don’t know because of the create, the awareness, we’ve got the awareness now so we are trying to encourage them to do all these things. staff, site , post in addition to being more aware of the need to promote activity, members of staff reported some examples of how their approach to activity had changed: well, we just, we’ve got to get the people out [of bed], washed and everything like that, and then we bring them, or they bring them in here [day room] and help with, anybody that’s available, really, help with breakfast . . . because we still do it on a weekend, even when therapy staff aren’t here, the nursing team still do it. staff, site , post communication co-design groups focused on a variety of ways to improve communication, and the changes had led to training for staff; redesigned ward information with emphasis on bringing items from home to personalise the wards; information on activities and how to access wifi; common charters of communication agreed by staff – personal and social interaction (london sites); and a new website (london, site ). sites and used many of the ideas developed sites and , for example digital clocks, familiar home items list, and a list of activity-related apps that could be used on smartphones or tablets. at site there was interest in adopting the ‘something about me’ board developed at site and increasing volunteer activity. however, the board was not actually taken up by the co-design groups and volunteer activity could not be progressed as the volunteer co-ordinator on site would not engage with the groups. at this site increased volunteer support for and provision of activities occurred following personal contacts between individual members of staff and existing volunteers and volunteer groups. many co-design groups prioritised updating and expanding the unit information leaflets to highlight how to access free wifi on the unit and to highlight the activities now provided on and off the unit and how these could be accessed. at site , co-design groups also addressed a major concern for all stroke survivors that in leaving the ward for social activity that they may miss important therapy time. the groups sourced telephone ‘bleep’ devices no longer used by medical staff and gave these to patients and carers when leaving the unit so that they could be called back for therapy sessions if required. patients and families taking part in the co-design and those on the ward noted the improvements: i think the information leaflet’s quite good because it says, it tells you things like where the day room is and that you can go into the garden and things like that. that new one, it’s also on the wall outside the ward isn’t it, the new one? because i remember reading it there and i thought oh this is different from the one that used to be there when mary was in. carer, site , post one patient and their carer had been involved in the communication co-design group and were pleased that the ‘my journey’ communication sheets were being used on the ward at site . these sheets were for staff to write down information about the patient’s progress and for relatives to leave questions and comments for staff: no, very happy [that the communication sheets were being used] because some days i’d try and ask [her husband] ‘oh what have you done today’? and sometimes he’d find it hard because when you went in later in the day they were tired and if they’ve had physio and everything else and half the time he’d just sleep, but whereas if you could pick something up and say ‘oh yeah, you did some therapy and how did that go today?’ . . . you can at least make conversation to him about it, without him saying ‘i can’t remember’ . . . just nice to know he hasn’t just been lying in bed or sat in the chair and just ignored . . . at least if you could read it and say ‘that’s good well done’. carer, site , post doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. we also observed ways in which the changes to the space, such as the ‘a little something about me’ boards and the refurbished day room at site , had a positive impact on interaction and communication. patients thought that the boards were useful and one patient remarked that they served to ‘break the ice’ with staff who did not know him. relatives were observed helping staff fill the boards in or even filling them in themselves. volunteers and other staff who were not based on the unit (e.g. phlebotomists) also appreciated the information provided on the boards and reported that it helped them find topics of conversation to bring up with patients. one phlebotomist said that it was helpful to know something about each patient and ‘see them more as individuals’. sometimes the boards were not up to date because of bed moves. a health-care assistant reported that she and ‘a few others’ tried very hard to keep the boards up to date but that this could be difficult during busy periods. she also said that not everyone ‘bothers’ to do it, even if they had time. at site , several changes were made to information for patients and visitors about how they could access different areas or be more engaged in their recovery. staff felt that this was a tangible output that had made a big difference: so you know the welcome to the ward sheets, we edited them so there’s one for every single ward now, and i know they get handed out at family meetings, i know on [site ] they do that, the others need encouraging to do it, but there definitely are printed forms for every single ward. they had on what facilities were available, so we changed it to make it a bit more user friendly, it had like a spider diagram that said, there is wifi, there is a garden, you can go to costa, and it kind of touched on all the things that we spoke about [in the co-design group], so, actually, families can look at that straight away. staff, site , post as part of the co-design process at site , information leaflets were produced for key workers to give to patients and family members, and the stroke association commenced monthly information drop-in sessions. although those changes may well have facilitated the change in perception about feeling informed, it was difficult to keep track of and report the extent to which those changes were actually being implemented. as notes from an observation at site show, even when new information leaflets and guidance about welcoming patients were put in place, not every patient was made aware of these: one of the patients in particular is very interested in the project and wants to know more. he asks me to send him an email with some readings so i do. he has never seen any of the leaflets, welcome to the ward, apps list etc. i give it to him. he later tells me he enjoyed seeing the familiar home items list, but if it wasn’t for me he would have never seen any of it. field notes, site , post staff from across all sites felt that create had raised awareness that activity was a priority and in some cases said that as a result they had made small changes in how they communicated or interacted with patients. this impression was given by both staff who did and staff who did not take part in the co-design groups: i think staff are thinking more about how to involve patients and get them talking and for myself i always go in now and make sure that i say hello to everyone, regardless, or introduce myself even if i’m not seeing that particular patient. staff, site , post one member of staff (site , nurse), who did not take part in the co-design groups, described how he now thought more about the patient as a person: ‘this is a person who needs to go out like myself’. he was more open with patients and involved family more, whereas before it had been ‘wash – dress – sit’. he shared an anecdote about two patients who did not like having the same breakfast every day results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk and wanted to go to the canteen to get their own breakfast. someone said he should take their orders and get it for them, but the patients wanted to go and choose for themselves. he then thought ‘yes, we keep them from making their own choices otherwise’. he took them to the canteen to get a breakfast takeaway, and they have done this every day since. he said that this had happened because of the create study taking place on the unit, and now he would be thinking about alternatives. although staff often said that they were enabling in their interactions and communications, this was not always supported by our observations and was especially obvious between routine tasks as discussed previously: the hca [health-care assistant] comes back to the gentleman in bed . she talks to him. he says ‘sorry’, but i [observer] can’t understand what exactly he says. it seems to me he is apologising to her that she has to do certain things to help him. she goes back to bay - and talks to the patients in the room, she then grabs continence pads and tissues and goes back to patient in room . he says sorry again. she does her job, but doesn’t say anything like, its ok etc. she puts on apron and gloves. she goes in and closes the door. field notes, site , post although staff reported positive changes to their communication and interactions to promote activity, some supported our impressions that communication was ‘work in progress’: i am not sure if we have achieved much in terms of the basic communication day to day between the carers of the ward. not the carers, the staff caring for the patients, because i think that’s where we need an ongoing input. so, that’s i think a big part, that’s difficult to change and i’m not sure if it will change? staff, site , post impact of changes: quantitative findings (behavioural mapping and patient-reported outcome measures/patient-reported experience measures) in this section, we present descriptive results from the quantitative data generated pre and post implementation of ebcd (the intervention): ( ) behavioural mapping and ( ) prems and proms. in addition, the results are compared within and between sites. in summary, behavioural mapping results were inconsistent across sites and showed a mixed pattern of inactivity (social, cognitive and physical) pre and post implementation of co-designed changes. however, taking the broad measure of ‘any activity’, there was some improvement at sites and (full ebcd) but similar levels at both time points at sites and (accelerated ebcd). our findings also demonstrate the discrepancies that arise when presenting overall activity/inactivity percentages, compared with the number of activities in the three domains (physical, cognitive and social). data analysis of prems/proms also showed a mixed picture across all sites. prem data analysis showed inconsistencies across items and sites. despite this, there were consistent changes in relation to item , which asked respondents whether ‘there were enough things to do in my free time’, which showed an improvement after the implementation of co-designed activities. no further firm conclusions from prem data can be drawn. prom data analysis confirmed that patients treated in the participating stroke units before and during ebcd implementation were not atypical and did not appear to be any more or less likely to be receptive to activity-based interventions than other groups of inpatient stroke survivors in other uk stroke units. we make further commentary on our chosen quantitative measures, behavioural mapping and prems/ proms, in our methodological consideration in chapter . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. behavioural mapping as outlined in chapter , behavioural mapping was used to provide an indication of activity levels in each unit on separate days at agreed time points before and after ebcd cycle implementation. the approach used in create recorded episodes of social, cognitive or physical activity. these data were from separate groups of patients in each site; we did not seek to compare ‘before and after’ scores for individual patients but rather used the behavioural mapping data as a broad indicator of activity levels in each site. all patients recruited for behavioural mapping were observed at -minute intervals between . and . or between . and . on separate days, including weekends. this allowed up to observations of each patient per day. during each -minute interval, the data for each patient was based on an observation made by the researcher over a period no longer than seconds (see appendix for the full behavioural mapping protocol). of note is that the percentages stated in tables relate to ‘inactivity’, so a reduction is a positive finding. within-site comparisons site (pre, n = ; post, n = ) pre implementation, participants in the behavioural mapping at site had a high level of physical inactivity, at %; levels of inactivity in the cognitive and the social domains were also high. however, level of inactivity reduced markedly in the physical domain between the two time points, from % to %; there was a more modest reduction in the level of social activity of % and a slight increase in cognitive inactivity of % (table ). the only physical activity recorded pre intervention for > % of the observations was engagement in activities of daily living (adl) (which could include personal grooming, changing clothing, eating and drinking), at %. changes were evident post intervention, with a % increase in engagement with adls and evidence of increases in the following activities: mobilising ( %), repositioning ( %), independent practice (usually of therapy-directed tasks) ( %) and transfers ( %). although cognitive inactivity increased slightly overall, again, the post-implementation observations showed that some cognitive activities were now occurring, including writing and art activity, listening to music or audiobooks ( %) and reading ( %). there was a small reduction in social inactivity ( %), which seems to be accounted for by an increase in talking and communicating with other patients, relatives and staff. post intervention, overall level of any activity increased by . % at site , despite inactivity being higher in the cognitive domain (table ). table pre- and post-intervention physical, cognitive and social activity/inactivity: site activity type pre intervention post intervention no physical activity % % no cognitive activity % % no social activity % % table pre- and post-intervention overall activity/inactivity: site overall (site ) pre intervention post intervention activity . % . % no activity . % . % results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk site (pre, n = ; post, n = ) as at site , levels of inactivity in all three domains at site were disappointing, with only cognitive inactivity showing a reduction between the two time points ( %) and increases of – % seen in levels of inactivity in the physical and social domains (table ). the most common activities recorded pre intervention were talking with other patients, relatives or staff ( %), engaging in adl (which could include personal grooming, changing clothing, eating and drinking) ( %), watching television ( %) and reading ( %). post intervention, some changes were evident, mainly in cognitive activity, with small increases in reading ( %), listening to music/using electronic devices ( %) and participating in group activities, including art and writing ( %). despite the small decrease in social activity observed, there was in fact a small rise in the percentage of time spent talking/communicating among participants at this site ( % from %). when the overall levels of any activity and inactivity recorded are considered for this site, these data show a small increase in activity of . % (table ). site (pre, n = ; post, n = ) pre implementation, both physical and cognitive inactivity levels at site were better than at sites and and similar to site . this site had lower levels of social inactivity than sites , and . between the two time points, levels of social activity remained the same, at just over one-third of the observed participant time. the level of cognitive inactivity fell by %, whereas the level of physical inactivity rose by % (table ). table pre- and post-intervention physical, cognitive and social activity/inactivity: site activity type pre intervention post intervention no physical activity % % no cognitive activity % % no social activity % % table pre- and post-intervention overall activity/inactivity: site overall (site ) pre intervention post intervention activity . % . % no activity . % . % table pre- and post-intervention physical, cognitive and social activity/inactivity: site activity type pre intervention post intervention no physical activity % % no cognitive activity % % no social activity % % doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. in common with sites and , the most common activity at site pre implementation was talking with other patients, relatives and staff ( %). use of mobile phones accounted for % of observed participant time in social activity. engaging with adl accounted for % and mobility accounted for % of physical activity. reading was the most common cognitive activity, at %, but patients also engaged with music or audiobooks % of the time, watched television % of the time and used electronic devices % of the time. post-intervention talking with other patients, relatives and staff was unchanged ( %). there were small increases in using mobile phones (up %) and electronic devices ( % increase); participating in group activity was evident during % of observed time, as was mobilisation at %, and listening to music/audiobooks (up by %). engaging with adl fell slightly to % and reading fell to %, whereas watching television remained the same. at this site, overall activity levels changed very little (up . %) but it had started with the highest baseline activity level of . % (table ). site (pre, n = ; post, n = ) here, too, the data show relatively high levels of inactivity in the three domains, with only social inactivity reducing by % between the two time points. as at site , post intervention there were small increases in inactivity in the physical domain and, at this site, also in the cognitive domain (table ). the most common activities engaged in pre intervention at site were talking with other patients, relatives or staff ( %), watching television ( %), engaging in adl ( %), using electronic devices ( %) and reading ( %). post intervention, some changes were also evident at this site, most notably in talking with other patients/relatives or staff, which increased by %, and reading, which increased by %. there was a reduction in television viewing and in engaging with adl. the trend evident at the other sites of changes in overall level of any activity was also seen at site , with an increase of . % (table ). table pre- and post-intervention overall activity/inactivity: site overall (site ) pre intervention post intervention activity . % . % no activity . % . % table pre- and post-intervention physical, cognitive and social activity/inactivity: site activity type pre intervention post intervention no physical activity % % no cognitive activity % % no social activity % % table pre- and post-intervention overall activity/inactivity: site overall (site ) pre intervention post intervention activity . % . % no activity . % . % results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk cross-site comparisons pre implementation, site had the highest level of physical inactivity and site had the lowest level of social inactivity. however, overall levels of inactivity across the three domains were broadly similar across the sites. the largest change in levels of inactivity occurred at site , where physical inactivity levels fell by %. at site , levels of cognitive inactivity fell by %, mostly accounted for by an increase in participants reading independently or with others. social inactivity fell by % at site , accounted for by an increase in talking with other patients, relatives and staff. when comparing overall activity, site had the lowest level pre implementation, at . %, and levels at sites and were . % and . %, respectively, with site having the highest overall level of activity, at . %. post implementation, all sites increased overall levels of activity, with sites and showing increases of %, site showing an increase of % and site showing an increase of % from its relatively high baseline level. summary although our behavioural mapping data are largely consistent with previously published work in terms of levels of inactivity, they do suggest that the overall time spent inactive on these stroke units was not as much as that seen in previous studies. , the behavioural mapping data, although from a small number of participants at each site, highlighted the differences in the provision of individually focused activity opportunities (which remained limited) and the changes we saw in the space/environment of the units, which led to an increase in structured group and informal social activities not easily captured by behavioural mapping. in addition, the behavioural mapping process highlighted the long periods of time that patients spent largely alone, despite the changes to space and activity opportunities, and was one of the main ways in which we observed the limited and task-oriented staff communication processes that largely did not change in the sites between the pre- and post-ebcd periods. overall, we question the relevance and validity of using behavioural mapping as a reporting tool in create in relation to anomalies in reporting; the small number of patients who were able to consent the day before behavioural mapping took place; not including scheduled therapy as part of our reporting; and finally the impact of contextual issues such as staff shortages and the severity of disability of the inpatient caseload. these methodological considerations are discussed in more detail in chapter . patient-reported experience measures and patient-reported outcome measures participants were sent a prom/prem pack containing a survey about their experiences as well as the impact of their stroke. demographic details of all respondents can be found in appendix . we provide a summary of pre-implementation and post-implementation prem and prom data below and the full data set can be found in appendices – . first, we report on prem items that scored particularly high or low, and on broad indicators of the quality of the patients’ experiences in these units. as these data are from different cohorts of stroke survivors at each time point and in each site, they provide an indication of patients’ overall experiences of these stroke services during their inpatient stay. for reference, box shows the items referred to in the following commentary and table shows the prom/prem response rates. pre-implementation patient-reported experience measure data: summary of findings in terms of the specific focus on the create study, responses to statement were most relevant. pre implementation, between % and % of respondents disagreed that there were enough things for them to do in their free time, with only % of respondents indicating agreement with the statement at site , % agreeing at sites and and % agreeing at site . by contrast, across all sites, ‘facilities’ were considered to be good, with between % and % agreeing with statement . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. box patient-reported experience measure items . when i arrived i was given information about the unit and what would happen during my stay. . the facilities on the unit were good. . there was somewhere secure to keep my belongings. . i was able to discuss personal matters in private. . there were enough things to do in my free time. . there was a friendly atmosphere in the unit. . i felt the staff really cared about me. . the staff worked well as a team. . i felt able to talk to the staff about any problems i had. . i was asked what i wanted to achieve during my stay. . i felt as though the staff and i were partners in the whole process of care. . the staff kept me informed every step of the way. . my family or carer was involved in discussions about my treatment if i wanted them to be. . i am happy about the amount of therapy i received for . . . a. swallowing problems b. speech and communication c. improving mobility d. independent living e. continence f. other . i received enough emotional support. . i felt well supported and prepared for my discharge. . i am satisfied with the progress i made during my stay. . thinking about how you were treated during your therapy sessions, which of these statements would best describe how you felt: patronised, respected, offended, supported, ignored, listened to, frustrated, motivated? table pre-implementation response rate prom/prem site number sent out number returned response rate (%) pre implementation post implementation results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk across all units, some dissatisfaction was evident in areas of information provision, with < % agreement with statement (range – %). similarly, there were low levels of agreement with statement (range – %), suggesting that limited attention was given to identifying personal goals for recovery. at the same time, these respondents had a higher frequency of agreement with statements – , which focused on feeling as though they and the staff were partners in the process of care (statement : range – %), that they had been kept informed during the care process (statement : range – %) and that family or carer involvement in treatment discussions could occur if wanted (statement : range – %). there was strong agreement with the statements that there was a friendly atmosphere on the units (statement : range – %) and that staff really cared about them (statement : range – %), and there were similar levels of agreement that the staff worked well as teams (statement : range – %). the respondents largely agreed with statement , that they felt that they could talk to staff if they had a problem (range – %). although the responses to statements – were positive, up to one-third of the participants disagreed with these, so experiences clearly varied within and across units. the responses to statement were more mixed, indicating some concerns related to feeling able to discuss personal matters in private (range – %). this reflects to some extent the limited number of private rooms/spaces on the stroke units and echoes concerns raised by former patients in the filmed interviews at sites and . at site , only % of respondents agreed that they received enough emotional support (statement ), with % disagreeing. however, % of the respondents at this site indicated that this issue was not applicable to them; allowing for this, the responses still indicated a low level of agreement that enough emotional support was received. at site only % agreed with this statement, whereas at sites and more than two-thirds of participants indicated that they had received enough emotional support (statement : both %). in terms of respondents feeling happy with the amount of therapy or treatment received in relation to the five areas listed in statement , the main area of concern across sites was linked to problems related to continence. here, agreement levels ranged from % at site (although % indicated that this was not applicable to them) to % at site , % at site and % at site . site had lower levels of agreement for swallowing, speech and mobility, at %, % and %, respectively. these differ quite markedly from those at sites and , where levels of agreement relating to swallowing, speech and mobility ranged between % and %. at site , the levels of agreement ranged from % for therapy or treatment for swallowing to % for both speech and mobility. in respect of treatment or therapy to prepare people for independent living, levels of agreement ranged from % at site to % at site and % at sites and , where, with the exception of continence, higher levels of satisfaction were also evident with other areas of therapy or treatment. post-implementation patient-reported experience measure data: summary of findings the post-implementation response rates at sites and were higher than those at sites and ; the reasons for this were unclear, but the timing of the survey could be one factor, at sites and it was distributed close to the christmas period. the response rates are detailed in table ; in all sites and at each time point when these were distributed, the response rate was < %. we report here on the differences in scoring of prem items between pre and post intervention. we cannot attribute these differences in responses directly to changes occurring in the stroke units during the ebcd process, but we report on the responses as broad indicators of the quality of the patients’ experiences in these units. the full data set can be found in appendices and . among the post-intervention responses, agreement with statement increased at three sites; this was most marked at sites and , where the proportion agreeing increased from % to % at site and from % to % at site . at site , the increase was more modest, to % from %, and, despite these increases, the scores still indicate relatively low levels of opportunity to be independently active. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. however, the level of agreement with statement at site actually fell quite substantially, from % to %. these responses are not easy to explain and differ quite substantially from the qualitative data, which record that a range of increased activity opportunities were made available and occurred at this site. as with the pre-implementation responses to statement , there were still quite high levels of agreement that the facilities on the sites were good, but, again, it is interesting to note that although the proportion agreeing with this statement increased at sites and by % and %, respectively, the level of agreement at sites and fell by % and %, respectively. in terms of information provision, an area of concern in the pre-implementation period, responses to statement also varied post intervention, with sites and showing a reduction in agreement with this statement of % and %, respectively, and sites and showing no change. co-design groups at all sites had identified communication with patients and families (rather than information provision specifically) as an area for improvement. the post-implementation responses show that providing information early in the inpatient stay remains an area of concern for patients. at sites and the changes introduced (new unit information leaflets) came towards the end of the co-design period and may have occurred too late to be captured in these questionnaires, but at sites and communication-focused changes had been implemented for longer periods of time. at the same time, another statement related to information provision ( : ‘the staff kept me informed every step of the way’) showed improved levels of agreement at each site (range – %, up from – %). responses to statement indicated higher levels of agreement at three out of the four sites (i.e. sites , and ) (range – %, up from – %), most notably showing a substantial increase at site , from % to %. at site , the level of agreement fell by %, from % to %. so, while acknowledging the lower overall response rates post implementation, some improvement was evident, but responses to these items in the prem indicate that progression to a more patient-centred approach remains an issue for these sites. responses to statement show higher levels of agreement in three out of the four sites (i.e. sites – ), with percentage increases of between % and % (range – %). site had a % reduction to % agreement from %, so finding somewhere private to discuss personal matters was a concern for some patients. statement addresses broadly the same area of patients being able to talk to staff about any problems; agreement with this statement fell in three sites out of four from the relatively high pre-implementation levels, which ranged from % to % to % to % post implementation, a reduction of between % and %. responses to statement , which explores receipt of emotional support, showed an increase in agreement in three out of the four sites (i.e. sites – ) (range – %), with a substantial improvement at site (up from % to % and with only % indicating that this was not applicable post implementation at this site, down from % pre implementation). at the same time as highlighting these areas where services still had room for improvement in communication and support, respondents indicated high levels of agreement with statement (range – % agreement), that there was a friendly atmosphere on the unit, statement , that patients felt that staff really cared about them (range – %), and statement , that the staff worked well as a team (range – %). statement , relating to patients being satisfied with their progress during the inpatient stay, had higher levels of agreement at all four sites (range – %). statement , addressing patients feeling supported and prepared for discharge, showed small increases in agreement at sites and (to % from % and to % from %), whereas site showed a small reduction, from % to %. the reduction in levels of agreement with statement at site is more marked, with this down % from % to %. responses to the five areas listed in statement (respondents feeling happy with the amount of therapy or treatment received) present a mixed picture, as in the pre-implementation period. these post-implementation responses are from a smaller number of patients at all but site and will reflect results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk to some degree the individual post-stroke disabilities and impairments experienced by these respondents. at site there were lower levels of satisfaction with therapy for swallowing problems ( % vs. %), but % of respondents indicated that this issue was not applicable to them and a further % indicated that they were unsure. a similar substantial reduction is seen in responses to the speech and communication statement at site ( % vs. %) but again % indicated that this issue was not applicable. in addition, quite a large reduction in satisfaction is seen for continence ( % to %), but % indicated that this was not applicable, and the level of disagreement with this statement among patients at this site fell from % pre implementation to % post implementation. improving mobility also showed a reduction but to a lesser extent ( % vs. %). the overall prem data analysis presented above shows a mixed picture across all sites, with inconsistencies across items and sites. response rate fell significantly at site , which might have been related to the timing of data collection, either side of the christmas period. other than the changes in relation to item , which we would have expected following the implementation of co-designed activities, it is difficult to draw any firm conclusions from this relatively small sample. we make further commentary on our chosen prem in our methodological consideration in chapter . patient-reported outcome measures the prom questionnaire comprised the subjective index of physical and social outcome, the eq- d and the oxford handicap scale. we did not intend the prom to be used to derive scores for each of the three subcomponents, but rather to review and describe participants’ perceived levels of disability and adjustment to life after stroke. as previously indicated, these self-completion questionnaires were distributed to two different cohorts of stroke patients, and returned by post. those who returned questionnaires may not be representative of the stroke patients who received care in the participating stroke units during the time periods identified. nonetheless, these data provide some insight into the post-stroke characteristics of patients who returned the questionnaires. below, we describe the broad issues emerging from these data. questions – were from the subjective index of physical and social outcome and were about physical functioning/mobility. all respondents had similar difficulties with dressing in the pre- and post- ebcd intervention cohorts; most reported some difficulty with dressing themselves, and on average % of respondents could not dress themselves fully post stroke. across sites, up to % of respondents reported either a lot of difficulty with moving around their homes or not being able to move around their homes independently at all. among the post-ebcd intervention cohorts, respondents at sites , and felt marginally more satisfied overall with their ability to perform daily activities around the home than did those at site . with the exception of site , where rates were higher in the pre-intervention cohort, those participants responding in the post-ebcd periods reported that they had a lot of difficulty or could not shop for or carry a few items for themselves, indicating relatively high levels of dependency in this area. for question , those indicating they were completely dependent or needed assistance most of the time increased in the post-ebcd cohorts at sites , and , but fell at site from % to %. questions – related to social/emotional functioning. except at site , where the percentage fell by %, response rates indicated that more people in the post-ebcd cohorts were never bored. in all but site , there was a small increase in the numbers of respondents reporting a good deal or quite a lot of communication with friends or associates. at site there was a reduction of % in the response rate for these two options in the post-ebcd cohort. again, in relation to levels of satisfaction with activities and interests, respondents were completely or mostly satisfied, whereas respondents at site reported lower levels of satisfaction with responses to these two options in the post-ebcd cohort (down by %). there were no differences in response rates to the item relating to visiting friends in either the pre- or post-ebcd cohort. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. our data showed that, across sites, between one-third and half of respondents felt self-conscious to some degree about their appearance, with up to % reporting that they tried to avoid going out in public, which is a significant proportion. at the same time, between % and % of the remaining respondents indicated that they were perfectly happy with their appearance when out in public. there were no major differences in responses between sites in the pre- or post-ebcd cohort. questions – are from the eq- d. in this prom we did not ask participants to rate their perceived level of severity in each of the five domains and so standard scoring is not applicable. we describe below the overall levels of agreement with the statements. in all sites, > % of respondents reported some problems with walking, and between % and % reported being confined to bed. a similar pattern was evident for washing and dressing, with between % and % of respondents in the pre-intervention cohort at sites – reporting having some problems with washing and dressing or being unable to wash or dress themselves. in addition, a high proportion of respondents across all sites reported some problems performing usual activities or being unable to perform usual activities (range – %), with some variation between sites. more than one-third of respondents experienced moderate pain or discomfort, with between % and % reporting extreme pain or discomfort. responses also showed that % and % reported being moderately anxious or depressed. rates differed slightly between the pre- and post-ebcd cohorts across sites, with a reduction in respondents selecting this response at site , no change at site and increases of % and % at sites and , respectively. rates of those not reporting being anxious or depressed varied by site from % to %, but there was no consistent pattern between pre- and post-ebcd response rates. questions – are from the oxford handicap scale. the first three items identified little or no impact of disability and impairment on everyday life and the remaining three items indicated moderate to severe impact on everyday life. overall, the responses indicate that between % and % of the respondents had no symptoms, symptoms that did not interfere with everyday life or symptoms that had caused some changes in the respondents’ lives but the respondent was still able to look after themselves. this level of response was largely similar in the pre- and post-ebcd cohorts at sites – but increased from % to % at site . however, responses to the remaining three items in this section of the questionnaire (questions – ) indicated that between % (site pre- and site post-ebcd cohorts) and % (site pre-ebcd cohort) had moderate to severe symptoms that significantly changed their lives and resulted in their needing help to care for themselves. at the most dependent end of this spectrum, between % (site ) and % (site ) of participants in the post-ebcd cohorts at these sites reported needing constant attention day and night. commentary on patient-reported outcome measures acknowledging the limitations of the sample size and response rates across sites, these self-report data are largely consistent with the levels of mood disturbance reported in systematic reviews, , and disability and impairment reported by the stroke association in the uk and in stroke data internationally. there does not appear to be any great difference in levels of disability and impairment between sites and between the pre- and post-ebcd cohorts. there is, however, some indication that respondents in the post-ebcd cohort at site reported higher levels of post-stroke impairment and disability than at other sites; however, the response rate is < % for this cohort. similarly, any signals that respondents in the pre- and post-ebcd cohorts at site reported less impairment and disability and lower levels of mood disturbance have to be viewed in the light of the very low response rate of only %. overall, these data indicate that stroke patients treated in the participating stroke units before and during implementation of the ebcd intervention were not atypical and do not appear to be any more or less likely to have been receptive to activity-based interventions than other groups of inpatient stroke survivors in other uk stroke units. results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk our target recruitment number was based on the anticipated numbers of patients likely to be cared for and discharged from the stroke unit in the months prior to the commencement of the ebcd process and then cared for and discharged in the -month period during which ebcd activity took place in each unit. we recognised that this number was no more than a crude estimation influenced by external factors such as caseload factors and admission rate. as it quickly became apparent that response rates were low in almost all sites, we extended the period of time for distributing pre and post questionnaires to months. the differences in the numbers of patients sent questionnaires reflects the number discharged from the units during each time point and known to be alive at that time. this partly reflects length of stay, which was often closely linked to stroke severity. we had no direct contact with these potential participants, but at site (yorkshire) the consultant physicians encouraged their patients to complete prom/prem questionnaires at their -week follow-up appointment, which may have increased the pre-ebcd response rate at that site. we did not send repeat questionnaires at this site as the response rates were good; however, the consultants changed at that site so no similar process was in place for post-ebcd questionnaires. we requested that principal investigators use this method of completion at follow-up clinics at site but they did not do so because of concern about participant burden. at site there were no -week follow-up appointments and so, if no response had been received to the questionnaire, second copies were sent out weeks later (after checking whether non-respondents were still alive). we judge that the difficulties with recruitment to and completion of the measures, as outlined above, influenced the validity and the contribution of the prom/prem data to our overall findings. implementation and engagement the following section describes the experiences of staff, patients and families who took part in the co-design, and synthesises findings from across all post-implementation interviews. for the most part, taking part was viewed positively, even though patients and families had been approached about taking part at a time of great personal disruption in their lives and staff had little or no additional time to dedicate to the process: i think create has been an absolute breath of fresh air for the stroke unit and i think all the challenges that we still continue to face on the ward have been bearable because of create and the positive influences that they have had, so . . . ot, site , post the ‘experience’ of taking part (staff, patients and families) the themes below demonstrate our understanding of some of the more nuanced reasons why participants wanted to take part and found the whole experience positive. the themes demonstrate why they wanted to be involved and the benefits to individuals, as well as the perceptions of the advantages of working together in a group and seeing through the changes. the added value of giving something back family members and patients appeared to be driven to be involved because of their desire to help others if possible, whether because of positive or negative reasons: well it was, it seemed good and it seemed hopefully helpful in understanding my experience, so no i’m pleased to be able to give something back more generally across the whole process. i feel i had very good care there, obviously you can always find little things that, and it’s good to have that patient, carer feedback is built in and i’m very happy to contribute to that. patient, site , post doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. for others, the sense of ‘giving back’ was an incentive to make the experience better for other patients in the future: because we had enough sort of concerns and situations she was in, so that’s why we decided to do it, and hopefully, [. . .], the little bit, the contribution we’ve made will help other people who are coming to that situation afterwards. so that was the reasoning out of it. carer, site , post patients and families felt that they had been taken seriously at the joint events, noting how members of staff came together and took time out of their working day to discuss how the stroke unit could improve. they felt that the groups provided an authentic way to share ideas and to give time to digest and discuss issues of importance: somebody said something about ‘well that’s all well and good, you know, but you have to bear in mind the schedule of the nurses’ or, and i thought ‘oh ok, this is like a real thing, this is not just like, or we could put up some new curtains in the wards, this is like people arguing about stuff’, and i thought ‘ok, cool, i’ll get stuck in, i’ll do my bit’, so yeah, i’ve enjoyed the process, it’s been very good. patient, site , post the added value of seeing previous patients was highlighted by staff, who rarely had a chance to see those for whom they had previously cared. they viewed the experience as positive as a result of the learning they could gain from hearing the patients’ experiences: so it’s actually nice to see them come back and see how they’re getting on, and actually not only see how they’ve improved in terms of their cognitive functioning, or their speech, or their mobility and stuff like that, but seeing them using their experience to then make a difference for others in a similar situation. staff, site , post similarly, staff felt that they had learned something from working together with the patients that would be of benefit to them in their professions: i think i’ve learnt that when people sit together from different areas or different groups or different levels, it’s very powerful, very, very powerful because it’s so much easier to resolve a problem. and i think just to persist, just that just to continue by today, even sometimes when you like really you feel like i can’t go on anymore, just to continue, continue, continue, eventually it will happen. staff, site , post the group dynamics there is an ongoing debate about equity and power-sharing in co-design/co-production and we were concerned about the impact that aspects such as the setting (the ward), the members of the group (staff in uniform) and the facilitator (which in create was the researcher) might have on equity. however, participants generally felt that they were regarded as valued members of the group and able to express their opinions to staff, and referred to examples of everyone contributing: i think that worked well and there wasn’t a hierarchy, do you know, it wasn’t just a case . . . there wasn’t really a sort of an us and them sort of attitude, and i think that, you know, the staff that attended, and the support people, and the hca [health-care assistant] people, they were very interactive, and i think that was good as well, because i don’t think anybody felt that they couldn’t say what they thought, which is important, yeah. patient, site , post results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk i thought once we’d got over the sort of initial, you know, start-up of it and everything, because you’re always a bit ‘what’s going on here’, but i think, yeah, we felt able to say what we wanted to say and what we wanted to say has turned out to have a valuable effect, so, that’s, yeah, very happy to say that we didn’t feel intimidated in any way. carer, site , post with regard to staff being naturally more dominant, we anticipated that because the co-designed changes were to happen in the hospital it would be the staff who had the authority and power to change, and so they would take on the tasks. this would put them in a somewhat more ‘powerful’ position. again, from the interviews, the patients did not comment negatively on this apparent power shift towards staff during the co-design process. in fact, at site , for example, one of the carers commented on the necessity of staff taking on those tasks and sustaining them: i said at the first meeting, the staff were going to have to take the brunt of whatever the changes were, and could they fit it in? and that’s, the only thing i can say about going forward, it’s got to be kept, the momentum’s got to be kept up by the staff and that’s the only people you can ask to do it. carer, site , post staff members repeatedly stated that they viewed patients as equal members of the co-design groups and found their contributions invaluable. however, there was an ongoing balance to be struck between being creative with the changes and doing something plausible within the time frame: i mean what is difficult with the nature of, and i think of the design where you had the patients and the staff within the co-design group is, the patients have fantastic ideas and really great ideas that we would be very keen to see, but almost, from sitting on a staff perspective, when these ideas are being suggested we straightaway know what’s plausible and what’s not plausible within economic constraints or within space constraints, or within the general sort of health-care system, and sometimes that can be quite a challenge in terms of relaying that back to the relatives or the patients in the group to say, actually it’s a great idea but it’s not going to be possible for x, y and z. so then it’s really up to us to then try and find a happy medium almost and try and suggest something that would be plausible within resources that we have. staff, site , post the value of being part of a group being part of the group itself and not just seeing the changes take place was invaluable for some of the patients. they felt part of something that helped them to ‘forget’ about the stroke for a short time, while at the same time being able to process what had happened together with people who had had similar experiences: it’s [create] helped me through me life because the experiences i’ve gained from it, you know, not just talking about strokes, but actually being part of a group, i think that helps one heck of a . . . [. . .] forgetting all that, at the end of the day it’s just nice to be with a group of people that you can talk to, and without realising it, [. . .] they’ve had the same problem as me and we’re all talking about what we’ve had, [. . .] i know that it could happen, there’s no point in thinking negative [. . .] but the one good thing i know now, and that is, if i do have another stroke i know a few people at [site ] that can help me through it, you know what i mean, so . . . patient, site , post hearing everybody else’s part of what they had gone through . . . it’s been really good, it opened my eyes quite a lot, because you sit there [on the unit] and you see things going on, so yes i enjoyed being part of making something better. carer, site , post doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. one member of staff who had not taken part in the initial events said that morale was higher on the ward now and that there were always new milestones to focus on and look forward to, as things were still being put in place. before, she had thought that ‘things will never happen’, but after create she knew that actions could actually occur as she was surprised at how quickly things had changed. in addition, in terms of teamwork, create had had a positive impact: i take from the process that getting people to work together can get a lot more done than one person trying to fight alone, which is sometimes the way it feels, so being able to quite easily get these things together, and also i’m not the only one that has ownership of it, [. . .], but there’s a whole team of us that sort of have ownership a bit of this, i think we’re all equal, so i think if, if something like doesn’t happen i can at least try and speak to those other people and see their thoughts, so i still feel that we’re a team even though we’re not meeting, we might not see each very often, but that, that team’s still there for, for future ways to work. staff, site , post staff in particular noted the way in which the project had enriched working life and given them a new purpose and meaning. some felt that taking part in ebcd had helped staff morale through bonding and orientating around a common purpose: staff seemed to be enthusiastic. it felt like it had knitted them together, perhaps more than just ordinary work does. staff, site , post another member of staff said that everyone should feel part of it: ‘we are all in it’. this member of staff had not taken part in the co-design groups but also said that ebcd was for the staff as well as the patients. members of staff commented that the ward was also now a nicer working environment for them. staff also felt that they had personally learned from create for their own practice and were more aware of how to improve activities, space and communication: it’s really nice to get a perspective from them [stroke survivors and caregivers] as well, because i think they brought a few different things to the table, from an outside perspective of how relatives want to be involved and the things that they missed and the things they didn’t know about, because, again, you totally take for granted what we know because you’re doing it every day. staff, interview, post, site although interviews generated a lot of positive feedback about the experiences of taking part in the co-design groups, staff highlighted several caveats relating to the resulting additional workload, concerns about sustainability beyond the project and the need for buy-in and support from all staff, especially senior management: i would, maybe like i say, just get more staff involved which is hard, or the staff that are involved to communicate with the other staff to tell them to pass that on so that things, some people didn’t know about the volunteers but . . . i think we should have more staff meetings within our groups just to say, especially after what’s happened on the wards ‘oh this and this and that’. staff, interview, post, site the recognition senior leadership teams gave was inconsistent at some sites and the following quotation illustrates how some managers did not prioritise create: it’s not the first time they’ve disappointed me but that’s disappointing, because, you know, a lot of work was done, i mean i invited my boss, i did invite him quite last minute to be fair but, you know, they didn’t go, you know, ‘oh no, we’ve got other things on’, but they’re always saying ‘oh we’ll come and support you at things’ and then when you want them, they’re not there. staff, interview, post, site results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk for context and richness to further interpret the use of ebcd in these stroke units, we now describe our process evaluation. process evaluation the process evaluation was informed by npt. we draw on data generated on the impact of developing and implementing co-produced interventions on the quality and amount of independent and supervised activity (social, cognitive and physical activity) occurring outside formal therapy on the four stroke units. table shows the range of data sources used for analysis and interpretation. normalisation process theory is a middle-range theory concerned with understanding how complex interventions are implemented in and integrated into existing health-care systems. as outlined in chapter , npt proposes four constructs that represent different kinds of work that people do around implementing a new practice: coherence, cognitive participation, collective action and reflexive monitoring (see table ). in our analysis we used npt in two ways. first, we used it as a sensitising device in our review of the qualitative data generated through observation, interviews and researcher process notes and reflections on ebcd activity. npt’s constructs were useful in identifying and thinking through factors that emerged as barriers to and facilitators of using ebcd and to introducing change at the four sites. this was particularly the case in relation to exploring what occurred at different stages of the implementation process within and across the participating sites. second, we used npt as a structuring device as we progressed in the analysis from identifying barriers to and facilitators of linking these, where appropriate, to npt’s constructs. we used the constructs as part of interpreting how being part of the study and using ebcd had an impact on the day-to-day work of staff on the stroke units and, over time, how changes to spaces and to the availability of activity opportunities appeared to have an impact on stroke patients’ experiences. to examine the factors and organisational processes acting as barriers to or facilitators of successfully implementing, embedding and sustaining co-produced quality improvements in these settings, we identified and considered the ways in which study participants engaged with the ebcd approach, and the create researchers’ roles in supporting the participants at each site. we sought to understand how staff, former patients and carers participated in the process of identifying and agreeing priorities for change, designing solutions to realise changes and finding ways to introduce these changes into existing working practices in the stroke units. we return briefly to the use of npt in chapters and . making sense of create and the experience-based co-design process (coherence and cognitive participation over time) four members of each stroke unit team were invited to attend create and ebcd training in london. sites nominated staff; our only stipulations were that those attending should include both therapists and nurses, and that these staff should be aware they would be taking a lead role in the ebcd process at their site. during the full-day training for staff from sites and , participants met with researchers and heard about the aims and design of the create study. they also heard directly from one of the originators of the ebcd approach (gr) as well as from an experienced clinician who had led an early ebcd project. we involved a designer (am) in this training. the day addressed the theory of (a.m.) and practical applications of ebcd (p.m.). feedback suggested that participants found the day to be lengthy and that the more theoretical overview of the methods was less engaging and less useful than the practical applied material. based on this, we reduced the training time for staff from sites and to a half-day; we retained the input from the experienced former clinician and focused on practical applications of ebcd by reporting how sites and had worked with the ebcd process and the changes they were putting in place. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. accepting the comments regarding the preference for the more applied approach to training, most participants evaluated the training sessions positively. staff from sites and heard first-hand accounts of how those at sites and were working to increase activity and discussed examples of changes already made by these teams. the groups also generated a series of practical implementation questions that were discussed during the training session (figure ). it was helpful meeting other people involved in the study on their wards. what they did and how it involved patients. ebcd training feedback, sites and from researchers’ reflections on participating in the training sessions and from informal contacts with staff attending both sets of training, enthusiasm levels varied even at this early stage of the study. in both training sessions, staff from one site were much more engaged than staff from the other. in session , staff from site (yorkshire) were more engaged, whereas in session staff from site were more engaged (london). we explored whether this variation could be explained by whether staff had chosen to attend the training or had been selected; however, this was evident for nursing staff in one site only (who had been selected). attending training afforded these core staff groups the opportunity to start making sense of the ebcd approach and to think both individually and collectively about how to share this knowledge and understanding with their stroke unit colleagues, about what changes could occur in these settings and what such changes would entail practically for their day-to-day work and that of their colleagues. the training also challenged these staff to think about how working with patients and carers as part of the participatory ebcd approach would differ from their experience of using mainly written feedback on patients’ and carers’ experiences of the stroke units (e.g. through the friends and family test and through surveys). making sense of the study and experience-based co-design in the wider stroke team (coherence and cognitive participation over time) stroke units are staffed by large teams of therapists and nurses, two or three physicians and support staff. ensuring that all staff working in the study sites had an understanding of the study and of the ebcd approach remained challenging; one factor influencing this was the time between researchers introducing the study at sites and the data collection and ebcd activity commencing. at sites and , major changes to the health research authority and research ethics committee approvals process, which occurred soon after approval for the study was sought, introduced a delay of almost months between training the core groups and data generation and ebcd activity getting under way. figure the ebcd training event for staff from sites and . reproduced with permission of fiona jones, university of london, personal communication, . results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk information about the study and the ebcd approach was disseminated through study posters and newsletters and by researchers explaining them at multidisciplinary team meetings and staff handovers at each site. however, the lengthy delay meant that early interest in the study shared by ebcd-trained core groups members quickly dissipated and the spread of understanding of what the study and the ebcd approach would mean for these units was minimal. we had anticipated that, after the training, the time before any study activity took place would have allowed core staff to make their own observations of patient activity/inactivity in their units and to identify and consider opportunities for increasing activity. however, as changes to working practices were not yet required and researchers’ access to sites was limited to planning meetings, only core team members at site did this. the delay meant that in both sites the core staff and wider teams focused on routine work demands; the create study and the ebcd process were not really ‘visible’ and, prior to data generation through observations and behavioural mapping, did not make demands on any staff group at this time. once the study was under way at sites, maintaining awareness of ebcd activity remained a challenge as, after the initial enthusiasm generated by the joint meetings dissipated, often some weeks would pass before the actions planned by co-design groups came to fruition and the changes became visible. early ‘wins’ such as reclaiming the day room at site and opening the new ‘social corner’ at site ensured that participants and wider staff and inpatient groups became aware that change was happening. researchers circulated newsletters on several occasions in each site to raise awareness among staff who were not directly involved in co-design group activity (see report supplementary material ). infection control restrictions on what materials could be displayed in public and staff circulation areas in some sites sometimes negated this strategy, and it was not uncommon in post-intervention interviews to hear some staff say that they had never read a newsletter and that they did not know what was happening in the study. therapists at sites and reported routinely sharing information about the ebcd-driven changes during their daily handovers or weekly team meetings, so lack of awareness in these smaller therapy teams was not reported: because there’s been a couple of therapy staff involved from physiotherapy and occupational therapy mainly, we meet in a morning for a board meeting and we’ve handed over what the progressions have been from the create study, so if they see anything on the wards this is what it is. so say for example we’re telling them about the updating of the garden and if we need to take anybody to the garden. staff, site , post nursing work patterns on stroke units are different from those of therapists, with larger numbers of nurses and health-care support workers in each team. communication across nursing teams working early, late and at weekends, and on extended day and night duty, is more difficult to achieve, but it was notable that create information was not included routinely in nursing handovers at any of the sites. however, a factor that increased staff awareness at all sites was researchers commencing data generation; once this occurred, staff interest gradually increased. some awareness of the study’s purpose also became evident among the patients being cared for on the units at that time through informal conversations and patient/carer questions during the ethnographic observations and through patients’ willingness to participate in behavioural mapping. raising awareness and engaging staff, patients and carers through researcher presence on units (coherence and cognitive participation) at sites and there was no delay between training core staff groups and regular researcher presence on the units as data generation got under way. in all sites this regular researcher presence during the pre-ebcd observation and interview periods was a factor in enabling a wider group of staff to start to make sense of the study. staff were curious about behavioural mapping and general observational processes, and researchers used this opportunity to provide brief verbal explanations of the study and ebcd to staff and patients on every occasion on which they were generating data. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. for staff, researchers supplemented verbal explanations with written study summaries, posters and newsletters indicating that the study was under way and explaining how it would proceed. in some units the presence of the researcher prompted staff trained in ebcd to discuss the study during routine team meetings, and this, in turn, reportedly encouraged team members to generate ideas for changes to increase activity. when researchers were conducting observations and behavioural mapping, staff commonly expressed their views about the low levels of current patient activity outside therapy and who could do what differently. informal comments were very similar to those expressed in the semistructured interviews conducted after the observations: the presence of researchers on the ward during ethnographic observations seems to have led to staff discussing the create project and the subject of patient activity on the ward. informally staff tell me they are aware that patients can become very bored and experience low mood if they do not engage in any activity for long periods. this, they report is especially true for patients who are on the ward for a long time; most staff say they know the worst times for inactivity were weekends and evenings. they comment [registered nurses, health-care support workers and therapists] that the study is necessary and that they hope that the situation can be improved. some staff expressed an interest in being involved in the planned ebcd activities. there were different thoughts about whether this was something hcsws [health-care support workers] would have more time to do or whether this should be something all staff contributed to. it’s possible that this increased awareness of inactivity led to the observed small number of efforts to increase activity on the ward during the weeks of formal observation. field notes, site although the initial researcher presence was helpful in raising awareness of the issue of inactivity and prompting wider staff groups to think about what would need to happen to change this, informal and pre-ebcd interview comments suggested that some staff were sceptical because they had experiences of good ideas for change being identified but not progressing. it was also difficult for most staff at this stage, namely prior to any ebcd activity, to envisage whether or not, or how, increasing patient activity may have an impact on their existing roles and working practices. despite some enthusiasm for increasing activity levels, even at this early stage staff routinely expressed the view that their existing workloads and staffing levels, which were often below those recommended in the national clinical guideline for stroke, would not allow them to spend time completing activities with patients. nurses and health-care support workers most commonly expressed this view. in npt terms, at this stage, for most staff, the ‘intervention’ was still undefined and not widely understood; commitment to change and comprehension of the possible benefits of changes were not widely evident. in turn, at all sites, there was no expectation or direction from senior therapists or ward managers at this stage that individual staff members or groups should review or change their working practices. patients and carers at each site also became aware of the study as a result of the observations and behavioural mapping and, as with staff, they sought information about the study and expressed their views on their current levels of activity outside therapy. this early contact and initial relationship with researchers appears to have influenced several inpatients later (after they had been discharged home) in consenting to participate in pre-ebcd interviews and, subsequently, in ebcd activities. in contrast to some ebcd studies identified in our rapid evidence synthesis, in which the recruitment and retention of service users was problematic, researcher presence proved beneficial in terms of both recruitment to these parts of our study and sustaining patient/carer involvement in ebcd activity throughout the study. the influence of participation in experience-based co-design elements (coherence, cognitive participation and collective action) at sites and , the structured and facilitated approach of ebcd was a major factor in staff making sense of create and the ebcd approach and progressing to a more engaged position, readier to commit to thinking about how change could happen in their site, to revised or new working practices and to thinking through who would need to be involved (cognitive participation). at these sites results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk the initial (separate) staff meetings and then joint meetings enabled quite large groups of staff to experience participation in some of the ebcd cycle stages (see table ). they viewed edited trigger films, heard first-hand accounts of patients’ and carers’ experiences, and then jointly identified ‘touch points’, discussed experiences that patients said mattered most to them and considered some solutions to these issues. these were high-energy meetings at which there were strong levels of enthusiasm for change; they were a powerful catalyst for larger groups of staff beginning to share the view that changes to stroke unit environments, access to resources and routine working practices to increase patient activity were not only desirable but also possible (figures and ): it felt quite exciting – it will be interesting to see how it develops, keen to be involved and contribute. feedback after joint event, staff, site figure staff event at site : thinking differently about activities for different patient groups and about how activity could occur in existing spaces. reproduced with permission of david clarke, university of leeds, personal communication, . figure joint event at site . reproduced with permission of david clarke, university of leeds, personal communication, . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. other features of ebcd that facilitated the development and implementation of changes were the defined and time-limited nature of the ebcd process and its use as a previously tested patient-centred service improvement model. this seemed to legitimise the staff time and resource allocation committed to participation in the study and the associated intervention. staff noted that the ebcd approach contrasted with previous attempts to introduce change in working practices, which were referred to as ‘poorly defined’ in terms of timescales, roles and responsibilities and as operating without additional resources. the patient-centred and participatory approach inherent in ebcd also appeared to have added a sense of responsibility for the core staff groups to deliver on agreed actions, and not to ‘let down’ the patients and carers with whom they worked in the co-design groups. for patients and carers at sites and , separate meetings provided the opportunity to explore their shared experience of stroke and stroke unit care. the trigger films demonstrated commonality of as well as differences in experiences, and watching the films began the process of identification by these former patients and their carers as a group of not only the shared experience of stroke, but also a shared belief in the importance of improving the experiences of patients and carers in their local stroke units. there were some differences in how the trigger films were received; at site staff showed visible emotion at the experiences highlighted by patients, whereas at site there was a mixed reaction: during the film itself, there was intense attention among the participants and signs of recognition of what patients and family members were saying – for example i noticed some staff members nodding, laughter at some of the observations made by participants. i had expected the film to raise visible emotions but i didn’t see any [tears, sighs, shaking of heads]. there seemed to be recognition and some laughter. on the table of mostly staff where i was sitting there was quiet attention but no visible signs of emotion. i don’t know if on other tables there were more visibly emotional responses. researcher reflections, joint event, site former patients and carers at sites and did not have the trigger film participation in common but they recognised the issues described in the films by site and participants as similar to their own. it seemed that the shared experience of stroke and a desire to improve the experiences of others in these units were sufficient to form a common bond. researcher reflections on the joint meetings and co-design group meetings highlighted the importance of former patients articulating their stroke experience and the impact that their impairments had on their daily lives. this seemed to inform an ongoing consideration of why activity outside therapy mattered to patients and how, practically, it could be increased. this common sense of purpose and shared experience is often referred to in discussion of the concept of a ‘community of practice’. a community of practice has been defined as: ‘a process of social learning that occurs when people who have a common interest in a subject or area collaborate over an extended period of time, sharing ideas and strategies, determine solutions, and build innovations’. although not ‘practitioners’ in the health-care sense, patients and carers participating in the ebcd activities in all of our sites shared a common experience not only with their peers, but also, to a greater or lesser extent in the different units, with the staff with whom they developed an ongoing relationship, shared ideas about activity post stroke and problem-solved in the co-design group meetings. the structured approach of ebcd and the facilitated events and activities of the ebcd cycle provided former patients and carers with a way to express their experiences and involved them in a group where they worked as partners in bringing about improvements to the stroke units that would increase patient activity: [. . .] i think, yeah, we felt able to say what we wanted to say and what we wanted to say has turned out to have a valuable effect, so, yeah, very happy to say that we didn’t feel intimidated in any way. carer, site , post results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk the same was true of participation by those who were ‘external’ to the day-to-day work of the stroke units. these opportunities contributed to participants’ progression in thinking from a shared understanding of the importance of change (coherence) to working together to define ways to implement, and ideas generated into existing working practices (cognitive participation). this progression includes thinking through how the changes designed to increase activity could be actioned, who would take responsibility for action and, in the longer term, who in everyday practice would deliver or support the actions. these mechanisms represent collective action in npt terms, and, although the work of implementation on the stroke units commonly fell to staff, the findings section of this report identifies actions completed by carers and former patients to support change. these included designing and painting wall murals (sites and ) and redesigning patient- and carer-facing documentation (sites and ), actions designed to increase activity by providing stimulating spaces and ensuring that inpatients and their families were aware of spaces for and opportunities to undertake joint and independent activity. the above may suggest that ebcd elements, including co-design group activity, progressed without incident. in terms of core group members and participation in co-design groups, this was not the case at most sites. at site , for various reasons, three of the four team members who received the ebcd training were not able to participate in the co-design work. however, other team members expressed an interest and volunteered to take on these roles, so staff commitment to the process evolved more naturally from the outset. at site , a core team member leading one of the co-design groups experienced problems with taking time away from their ward-based role and then had an extended period of sickness. this had an impact on and slowed the progress of this co-design group, but, as at site , other staff members, in this case supported by the ward manager and site researcher, maintained the activity and the agreed actions were progressed. actions included securing funding for one of the health-care support workers to provide regular hairdressing and personal grooming sessions outside their normal ward role; this realised both person-centred and social activity goals. at site , a champion emerged quickly who led the process at site level who encouraged staff to attend training and sign up for events and attended most if not all co-design groups. site had the most co-design groups and the most attendees, which we believe was largely because of the enthusiasm and persistence of the local champion (see table ). at site , two ebcd-trained core team members, both nurses, attended only the joint meeting and did not participate directly in any of the work of the co-design groups they had agreed to. despite having support from their ward manager, both maintained that they could not take time out of their routine work to participate in the co-design meetings; other members of the co-design groups agreed to conduct the review of priorities and action- planning. progress was slow in the three co-design groups and few actions were completed at this site until a combined meeting of the groups led to rapid realisation of several agreed activity support actions. the additional contribution of the site researchers as facilitators in supporting and sustaining co-design work is explored later. in our view, the development of communities of practice to a greater or lesser extent in the co-design groups at each site provided a support mechanism that sustained the work and progress of these groups when they were faced with the challenges outlined above. leadership, managerial authority and support (cognitive participation and collective action) previous ebcd studies have identified the central importance of senior staff support and leadership in service improvements generated through participation in ebcd cycles. closely allied to this is the presence or absence of managerial authority, resource allocation and support for proposed changes. based on our review of facilitators for co-production and ebcd-like projects, we aimed to set up project oversight groups with membership including directorate-level managers, senior nurses and those with cross-organisational roles. at sites and , we set up these groups, but the commitments of these often very senior managers meant that interaction was largely through e-mail updates or one-to-one meetings with researchers. we could not engage equivalent staff and establish an oversight group at site or . the same processes of offering to meet with these staff individually and repeated invitations to attend ebcd activity were adopted, but these were largely not responded to or the promised attendance did not actually occur. one impact of the accelerated ebcd process was that doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. researcher time at sites and was also reduced. researchers enlisted the support of unit-based ebcd champions in seeking to involve more senior managers, but this did not lead to the involvement in oversight of the project that we sought. although oversight group members at sites and were often not active participants, they were important in expressing their support for project activity, in helping to navigate often complex trust organisational structures and in specific situations for providing financial resources to enable co-design group ideas. for example, at site , staff raised £ from participating in a sponsored -km run. the chief executive at the site matched the sum raised and these funds were used to redecorate the day room and install a kitchenette. in our view, the oversight groups at sites and provided direct and indirect support for unit-based staff. having defined senior managerial contacts in these organisations ensured that unit-based staff could activate these potential lines of support. this was not impossible to achieve, but it was made more difficult at sites and , as only the chief executive and the therapy lead, respectively, engaged with the ebcd groups and the researchers. in all sites, a range of staff working in the trust in roles including therapy service managers, matrons, patient experience managers, patient safety officers, volunteer co-ordination and estates management joined patients and carers in different co-design groups. typically, these individuals were not involved in every co-design meeting held but their involvement was often significant (see below) and had an impact in terms of both cognitive participation and collective action. nhs staff are acutely aware of the resource constraints affecting their services, and often have experienced frustration at barriers they have encountered when seeking to improve or change services. these include infection control and patient safety requirements, lengthy delays or inaction when estates work is requested and lengthy and bureaucratic processes to work through when looking to include volunteers in unit-based activity. collectively, we found that staff who were otherwise dynamic and enthusiastic advocates for increasing patient activity often shared the view that such barriers were fixed and would, inevitably, limit what could be achieved. the perceptions that ‘the trust’ would not ‘allow’, for example, murals to be painted on walls, shelving to be added in patient bays, hot drinks facilities to be added for patients and carers to use independently or volunteers supporting patients with social eating were pervasive and initially were shared by some of the clinical managers who attended joint meetings at site . these perceptions proved to be largely inaccurate. the contributions of participants from the wider hospital, patient services and volunteer services were significant and these participants typically explained how changes could in fact be realised, and, importantly, provided examples of such changes already operating in the same trust. these participants were used to working with departments and services that were often criticised in the routine discourse of ‘infection control/estates will not allow it’ and understood what was required to introduce, generate support for and bring about changes involving these departments and services. sometimes these participants undertook to make things happen themselves; for example, at site the patient experience officer worked with the volunteer co-ordinator to identify new volunteers, develop a mealtime support training programme and follow this through to the provision of a regular volunteer-run social eating group on sundays. at site , the volunteer co-ordinator attended the joint event and many of the co-design groups to provide a rapid link to possible volunteers for activities such as reading support and exercise groups. at site , the therapy services manager supported the idea of a breakfast club to increase social contact between patients and provide an opportunity for meaningful functional rehabilitation activity. this support was evidenced by changing the working times and early-morning responsibilities of two therapy assistants who were assigned to establish and run the breakfast group (collective action). therapists and nurses supported the group, quickly establishing it as a -day-a-week activity. in this case the work of implementing change was consistent with staff members’ beliefs about the unit as a rehabilitation space, and the work required of the therapy assistants was defined as rehabilitation support integral to their job purpose and consistent with the kind of one-to-one kitchen activity interventions they already completed with patients prior to discharge (cognitive participation and collective action). results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk however, support from wider trust services was not always evident. at sites and , volunteer co-ordinators either focused on the obstacles to volunteer involvement or ignored repeated requests to discuss routine volunteer involvement on the stroke unit. co-design groups responded differently to such challenges; some decided not to pursue volunteer activity, whereas others, such as at site , made direct contact with existing volunteers to request support for arts and crafts sessions and contacted the volunteer programme of a local college, which already had permission to work in the trust, to set up their involvement in regular sessions of activity support on the unit. at each site, unit-based leaders emerged; often, but not always, these were core group staff who had been through the ebcd training. they were not always the most senior or most experienced members of staff in the units. for example, at site , two members of the co-design groups who were particularly active in increasing patients’ social, cognitive and physical activity were a health-care support worker and a stroke rehabilitation assistant. a similar situation was apparent at site , where a therapy assistant worked across co-design groups and formed an alliance with the ward manager (who was not ebcd trained). together, these two staff members drove the initial changes, which included reclaiming and equipping the day room, repurposing a large window seating area and encouraging therapists and nurses to use these. at site , one member of staff who had not been to the initial training emerged as the ebcd lead for the ward after the first joint meeting. a general manager and a hospital matron at site also helped expedite changes such as new curtains, clocks and redecoration; their involvement was prompted entirely by a meeting at which unit staff presented the aspirations for the ward and asked them for help with the barriers being experienced. the meeting was organised by the lead facilitator (a dietitian) and the researcher for site . direct actions related to the requests made by the ebcd champion suggested that these staff (a matron and a general manager) also developed some commitment to the project’s anticipated benefits, evidenced by their allocation of resources and continued involvement in seeing these planned changes through to completion. although these staff were not necessarily part of the community of practice developed through the co-design groups, they made a defined contribution to the collective action needed to improve patients’ experiences at this site. in terms of leadership style, perhaps the predominant approach evident across sites was an action- centred approach, with most staff (but, again, not all) leading co-design groups focusing on and reviewing progress against agreed tasks in each meeting but at the same time actively including, as far as they were able to, patients and carers as partners in the planning and decision-making of the groups. there were no instances in which patients or carers were invited to lead the co-design groups in any of the sites, although, as indicated above, their contributions were actively sought, and our findings confirm that these were influential in the changes that occurred across the four sites. medical staff largely did not participate in the co-design meetings, but they continued to show interest in the ebcd approach and supported the work in practical ways. at site , the stroke consultant sourced and purchased secure, mobile ipad stands and accessed unused hospital bleepers. at site , the medical consultant helped facilitate and set up the staff and joint events and secured funds for equipment from his research budget. in recognition of this, the co-design groups chose to name the new social corner after him when he left the unit. experience-based co-design activity was welcomed but added to the workload of core group staff (cognitive participation, collective action and reflexive monitoring) in common with findings from our rapid evidence synthesis of co-production and ebcd studies, core staff group members in the stroke units in create were not expressly allocated any time out of their usual working day to participate in and action co-design activity. instead, staff were encouraged to work flexibly, and their line managers largely encouraged and supported their staff to participate in the ebcd work. this was somewhat easier for therapists at each site than it was for nursing and health- care support workers, for whom taking time out to attend meetings in the course of a shift was often problematic. ward managers at sites and tried increasing the number of nurses or health-care doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. support workers on shift on days when ebcd meetings occurred but, on some occasions, the additional staff were moved to other wards perceived to be understaffed on those days, so this strategy was not repeated. these ward managers felt that this represented a lack of understanding in the wider organisation of the evidence about the staffing levels required to provide safe and effective care for stroke patients and was an understandable organisational response to recurring staff shortages in different areas of the trusts. however, the enthusiasm for the project at sites and was such that some staff came to the joint meeting on their days off. this kind of commitment was also evident later in the study at these sites, with staff coming in to work on their days off or before a shift commenced to participate in the co-design meetings. core team members differed in the amount of time they were able to allocate to ebcd activity and progressing the actions agreed in co-design meetings, but most identified that they needed to complete some activities in their own time. these staff typically explained their willingness to undertake this extra work by referring to patient benefits, which were becoming more obvious as the co-design activity progressed in each site (collective action). where the work of implementing increased patient activity was perceived to be enhancing the patient experience in ways consistent with staff members’ rehabilitation ethos, and where implementation was not requiring substantial change in staff members’ roles, core group members indicated that the extra effort was worthwhile (reflexive monitoring). other, less involved, team members’ feedback on changes, and on how these were having a positive impact on patients being more independent, completing personal care tasks or engaging in therapy, increased the likelihood that the changes would be sustained: no, i think it’s given me a massive workload, i think it’s doubled it . . . to be fair. but i was committed, i mean i took it on, i was committed, but i’ve enjoyed that, i’m glad for the changes. [. . .] it’s what i wanted for the ward, from the minute i got there i knew we needed changes, so i was happy to help bring the changes. staff, site , post at each site there was some delay before the ideas and actions agreed in co-design meetings came to fruition. in most sites, changes began to happen, sometimes rapidly after the second co-design meetings and were then visible to the wider staff groups. changes to the environment and use of space in each of the units were positively received. these spaces then began to be used for structured group activities. as these changes became visible to wider staff groups and involved more patients more regularly, these staff in turn appeared more receptive to further changes involving external partners or providers, for example complementary therapy from a local health network (site ), singers from a local university (site ) and young musicians from a community arts group (site ). when changes became visible and change gained momentum across sites, this elicited both positive and negative responses. for example, at site there were complaints that the ‘something about me board just appeared’, with no real consultation with the wider staff group about why it was needed or who would complete the information required. however, the same staff also said that they liked what the board was designed to do. staff experiences and comments such as these highlight that it is difficult to secure cognitive participation and commitment to collective action from those stroke team members who have had limited engagement with the implementation of ebcd-driven co-designed interventions. overall, however, shifts in staff members’ perceptions and behaviours suggested that collective action and reflexive monitoring were becoming more widespread in most units as activity-focused space changes or opportunities became more evident. however, at sites and , continuing the work to improve patients’ activity opportunities and engagement relied largely on core group members or those who had taken on these roles as other staff left or did not participate as expected in ebcd activity. researcher facilitation role our rapid evidence synthesis highlighted that the facilitator role in ebcd projects was an important factor influencing successful engagement in improvement work focused on service user experience. in create, researcher presence on the units was less frequent than that reported for full- or part-time results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk project facilitators in other ebcd projects, but it served a similar function in prompting, encouraging and supporting core team members to maintain their involvement in ebcd activities. , an important element of that was the role the site-based researchers played in getting the ebcd activity under way and in keeping the process moving at each site. researchers agreed with core group members that they would organise the staff, patient and joint events in consultation with core team members, and researchers recruited former stroke patients and carers and took responsibility for ensuring that they could attend on the dates agreed. they booked accessible rooms for meetings and ensured that patients and carers were reimbursed for travel expenses or they arranged transport for former patients to get to and from meetings. researchers liaised with core team members to co-facilitate the staff and joint meetings, with staff presenting feedback on their agreed priorities and co-facilitating the small-group work at each of these meetings. this joint approach, although often initiated by researchers, helped to build the confidence of core team members, and at sites and it gradually increased the engagement of these key staff members in the ebcd activities, supporting cognitive participation and collective action. at sites and , because the separate staff meetings did not occur, core team staff had less time and fewer opportunities to work with researchers before the joint meetings took place. at site this appeared to have had little impact on the progression of the co-design meetings, whereas at site core team members either were less confident in chairing and leading the co-design meetings or did not participate in these meetings, citing workload pressures. at this site, the researcher was asked to chair the co-design meetings and did so while ensuring that responsibility for action to bring about change was allocated to staff participants, sometimes in conjunction with former patients and carers, for example in redesigning the ward information leaflet and developing the wifi access leaflet. in common with reports from facilitators of other ebcd projects, researchers spent considerable time trying to make contact with core staff members and others participating in ebcd to set up meetings or to check on progress with agreed actions. co-design meetings were commonly arranged to run late morning to early afternoon to maximise staff participation. core staff were asked to record action plans for each meeting; this worked with some staff in some sites (most commonly when therapists or therapy assistants led the groups) but not in others. in consultation with the core team members, it was agreed that the researcher or one of the core team members would take responsibility for communicating a summary of the discussion and actions agreed at each meeting. the researchers prepared newsletters every – weeks to report on the work of the co-design group; these were circulated to wider staff and patient groups. researchers at each site became aware of a degree of reliance on them to co-ordinate ebcd activities; this was more evident at sites and , where researchers sometimes felt the need to go beyond their regular research role. for example, at site they participated in a fundraising -km run, collected and transported paint supplies across the city so that a mural could be completed on the unit and attended a weekend music concert provided by children at christmas. at site , the researchers attended and co-facilitated an open day set up by core group staff to showcase the work of the co-design groups. this illustrates one of the main challenges faced by the researcher, and with the staff in the co-design groups in both phases was a practical and predicable response in that researchers agreed their role would include co-ordination of ebcd and co-design meetings. however, at sites and , staff reliance sometimes went beyond researcher co-ordination to, on occasion, expecting that researchers would take on the responsibility for some of the actions agreed by the co-design group. it is possible that one reason for this in accelerated ebcd sites (i.e. sites and ) was that there was less time for staff members supporting the co-design groups to progress from cognitive participation, that is committing to a set of actions to bring about change, to a position of collective action and undertaking the work required to actually implement changes in practices. this may also be an unintended consequence of researchers’ regular presence on the units and their willingness to support staff in their ebcd-generated planning for change. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. increasing patient activity opportunities in routine work (cognitive participation, collective action and reflexive monitoring) as the co-design groups completed their sets of three or four meetings and patient activity outside therapy was increasing, core staff group members in each site, particularly therapists, began to recognise that the changes to space and opportunity for activity could be incorporated into the daily routine of the unit. for most therapists and therapy assistants, the work of increasing activity was conceptualised not only as reducing boredom and occupying time for patients but also typically as a therapeutic opportunity. for example, in lunch and breakfast groups at sites and , patients’ activity provided opportunities to work on therapy goals, including both cognitive challenge and functional task practice. these areas of work are consistent with the goals of rehabilitation and of therapists; they did not require therapists to work in particularly new or different ways and, as a result, were likely to be embraced and not resisted or rejected. importantly, increasing patient activity did not mean that patients spent less time in formal therapy, which would have had a direct impact on the continuous ssnap clinical audit of therapy provision. in some sites, staff reported that changes such as the ‘a little something about me’ board (site ) or the ‘home in the ward’ personalisation of bed spaces (sites and ) could make therapy more interesting and relevant to patients if, during therapy sessions, staff were able to draw on patients’ personal information through these methods. in npt terms, these staff had moved from committing to increasing activity (cognitive participation); they understood the work required to establish regular activities and they had identified staff who would lead on or routinely support activities (collective action). in these areas at sites and , the work of implementation became more focused on embedding regularly occurring group or individually focused activity into the daily work patterns of therapists and therapy assistants (reflexive monitoring). post-ebcd observations and interviews suggested that there was limited interprofessional consideration of activity promotion outside the initial joint and then regular co-design meetings. this was the case at all four sites, with dialogue about activity promotion being more likely to occur during uni-professional and non-professional contacts than in multi- or interdisciplinary forums, the latter tending to focus on discharge planning rather than on providing opportunities for reflexive monitoring of the changes brought about by ebcd activity. our observations suggested that nursing staff at each site had high workloads and were frequently affected by staff shortages. however, at all sites we also identified periods of up to minutes every day and at the weekends when most health-care support workers would congregate at the shared workstation area. observations indicated that conversations at these times were often, but not always, social rather than focused on patient planning or organisation. registered nurses were more often engaged with activities that facilitated patient discharge or supported the organisational functions of the hospital, for example reporting bed status and ordering supplies. nonetheless, there was limited evidence of registered nurses in charge of the ward encouraging or directing health-care support workers or other registered nurses to participate in patient-focused social or cognitive activity. this differed from some instances when we observed more senior therapists encouraging or directing stroke rehabilitation assistants or therapy assistants to prompt or support social and cognitive activities. in some cases, for example at sites and , we observed health-care support workers trying to involve other nursing staff in activities they had set up with patients during these periods, but there were few observed instances when they were able to do so. in our view, the observational and interview data suggested that, in npt terms, many of the members of the nursing staff groups in each site did not develop an individual or a collective sense (coherence) of the create project or the ebcd approach as something they needed to participate in (cognitive participation). nursing staff typically expressed verbal support for the aims of the study and the intentions of the co-design groups when they became more aware of these, often after several co-design meetings had taken place and changes were more visible or evident, but they often did not seek to become part of these groups. ward managers at sites and were very aware of the challenges that registered nurses face in taking time out of nursing care provision during typically very results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk busy - or -hour shifts and were prepared to allocate time for the nurses to attend and participate in co-design meetings. registered nurse and health-care support worker attendance occurred to some extent at site but not at site . although they did not obstruct or resist changes emerging from the co-design groups, nursing staff largely excluded themselves from this work. this suggested that, despite professing a commitment to facilitating rehabilitation and enabling stroke survivors to regain their independence, many members of the nursing teams in the participating sites did not appear to feel that increasing patients’ participation in social, cognitive and physical activity was consistent with their established view of what constituted legitimate and required nursing work in stroke units. there were some exceptions, particularly two registered nurses and a health-care support worker at site who actively engaged in co-design work. similarly, at site the commitment of the nursing team, prompted by the ward manager, to the -day-a-week breakfast group was a specific example of nursing staff supporting a structured group activity. however, overall, across sites, nursing staff were less engaged than other staff groups and volunteers with increasing patients’ activity opportunities. did the reduced elements/accelerated approach impact on the implementation process (coherence, cognitive participation and collective action)? in an earlier study of accelerated ebcd, locock et al. focused on the impact of using an edited film of patients’ experiences compiled from an existing national archive. in our study, at sites and , we used existing films from our first two sites. however, we also removed the separate patient and staff meetings. as a result, all participants in these sites had less opportunity to explore experiences and to prioritise areas of change in working practices or resource availability. the other important impact of removing the separate staff meeting was that the opportunity for a larger group of staff members to discuss the project and gain insight into the ebcd process was lost. this appeared to have had an impact on the numbers of attendees at the joint meeting at site , which was much smaller than that at the meeting at site . the result was that the number of staff, particularly nursing staff, who knew of and sought to participate in study-related activities remained small. however, this was not the case at site , where the accelerated ebcd also occurred; here, staff participation was equal to that at site . in fact, members of staff asked for a separate staff meeting prior to the joint event so that they could brainstorm ideas for change beforehand, and thus somewhat initiated a replication of the staff event themselves, although this was much more brief. their ideas were captured and formed a guide for their priorities at the joint event (figure ). figure ideas captured at pre-meeting: staff at site . reproduced with permission of fiona jones, university of london, personal communication, . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. the absence of the edited film and separate patient meeting did not appear to have an impact on the commitment and engagement of former patients, carers and volunteers who participated in accelerated ebcd. most of these participants had been recruited after being interviewed about their experiences in the stroke unit, so a basic relationship had been established with the researcher at that site. these former patients and carers participated in the majority of the ebcd activities and thus repeatedly engaged with dialogue about, action-planning for and, later, evaluation of changes to the environment and, to some extent, changes to the working practices of stroke unit staff. co-production approaches such as ebcd enable participants to focus on and make the changes they care most about in terms of their experience of a service; in the ebcd work in the create study, former patients and carers spoke repeatedly of wanting to improve the experience of people who, like them, would need to spend an often extended period in a stroke unit. in this sense, the coherence and cognitive participation of stroke survivors, carers and volunteers was enabled by their continued participation in the work of co-design groups. because former patients, carers and volunteers in each site were active contributors to designing changes, they played a key role in ensuring that ebcd champions and other staff involved in the work of the co-design groups maintained the momentum and that they saw through the work planned. former patients and carers became an integral part of co-design groups in each site as they believed in and were committed to making changes happen. as indicated above, these participants were part of the communities of practice that developed following the joint events and through the regular co-design meetings. opportunities for former patient and carer involvement in reflexive monitoring occurred to some extent as co-design meetings progressed. however, as these participants largely stopped being directly involved after the last co-design meeting, the celebration event was the main opportunity they had to engage with staff they worked with on the ebcd and to review what had been achieved and what was required to sustain these achievements. reviewing the qualitative data generated in our study using the lens of npt ensured that we adopted a systematic approach to exploring the factors and organisational processes that acted as either barriers to or facilitators of successfully implementing, embedding and sustaining ebcd-driven co-produced quality improvement in the form of increases in social, cognitive and physical activity in these stroke units. npt proved valuable for reviewing our interpretation of the findings from this large data set. in relation to barriers to and facilitators of using full or accelerated ebcd, and implementing complex interventions in health-care settings more generally, using npt helped identify the challenge of ensuring not only that staff have the time and opportunity to comprehend the nature of the intended change in practice, but also that the mechanisms of change, in this case the facilitated, structured participatory co-production methods inherent in ebcd, are communicated to and involve as many staff in the change process as is feasible. the process evaluation highlighted that, despite its participatory approach, ebcd is subject to the same implementation challenges as other complex health-care interventions in terms of variable organisational buy-in, differences in the commitment of professional leaders, and differences in the engagement of staff whose primary concern is ensuring that their responsibility for care and treatment is discharged and for whom existing routine working practices are familiar and get the required work done. however, moving beyond npt’s focus on implementation and the work this brings, it has also been important to reflect on ebcd as a process and the ways in which many stroke unit staff engaged with this process. we found that, rather than being conceptualised by stroke unit staff as an additional burden to those already having an impact on their practice, such as the continuous clinical audit process of ssnap and the continuing challenges associated with high workloads and staff shortages, the facilitated and structured approach inherent in ebcd provided a legitimate and, to some extent, protected space in which to jointly plan and co-design changes in unit spaces, unit processes and some staff practices. these changes were focused on issues that former stroke patients identified as important and that staff recognised and endorsed as areas that would improve patients’ levels of activity and overall experiences in stroke units. in the context of the create study, although a significant number of changes became evident in all sites post ebcd, differences in enacting what results: impact of changes nihr journals library www.journalslibrary.nihr.ac.uk was often referred to as the rehabilitation ethos in the participating stroke units also influenced the involvement of different staff members in promoting and facilitating increases in social, cognitive and physical activity. these, together with the cessation of the time-limited, facilitated and structured ebcd process and with the movement of staff, are factors that will influence the sustainability of the changes now evident in the participating units. changes involving structured therapy-led activity, such as breakfast clubs and other group activities, are more likely to become embedded in staff members’ routine work and depend less on individual staff members. activities that depend on volunteer and external group engagement are more at risk of cessation when key individuals move on. we have highlighted the challenge of sustaining changes that occur in co-production projects previously. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. chapter conclusions in our results we have demonstrated that: . despite increasing interest in and advocacy for co-production, there is a lack of rigorous evaluation of these approaches in acute health-care settings. in particular, there needs to be evaluation of clinical and service outcomes as well as cost-effectiveness of co-production approaches relative to other forms of quality improvement. the broader impacts on the values and behaviours of participants also merit evaluation (research question ). . completion of full and accelerated cycles of ebcd as a particular form of co-production in four stroke units was feasible. both forms of the ebcd approach resulted in improvements in the quality of the stroke unit’s environment and increased activity opportunities for patients. improvements were focused on issues that former patients and carers identified as part of the participatory ebcd approach. we found less evidence of positive change in enabling communication between staff and individual patients, which was more commonly task oriented than patient centred (research questions – ); these findings were evident in both the qualitative data and the responses to the prems in each site. . qualitative evidence from different sources (interviews, ethnographic fieldwork) has shown that ebcd can lead to improvements in supervised and independent activity. this was achieved largely by increasing access to groups, both structured and staff-led groups and social groups facilitated by community volunteers, and by changing the use of existing ward spaces, which provided more opportunity for social interaction and informal group activity (research questions – ). . changes in levels of social, cognitive and physical activity measured by behavioural mapping were inconsistent across sites and showed a mixed pattern of activity and inactivity in the small groups of patients observed pre or post implementation of co-designed changes (research questions – ). however, taking the broad measure of overall level of patient ‘activity or inactivity’, there was some improvement at sites and (full ebcd) but minimal changes at sites and (accelerated ebcd). . there were some signals in the post-ebcd cohorts’ responses to the prem that at three out of the four sites there were more things for patients to do in their free time, and some indications that elements of patients’ experiences in the units had improved between the pre- and post- intervention data collection periods. however, these changes were not consistent across all sites and may reflect different patients completing the questionnaires at different time points rather than actual changes. prom data indicated that the respondents were not atypical and had levels of physical impairment, dependency, emotional and social limitations congruent with national and international stroke statistics; however, rates of response to the prem and prom were low, varying from % to %. . patients, family members and staff engaged well with both forms of ebcd and perceived that substantive changes had occurred. co-design was a feasible method of stimulating new independent and therapeutic activities and prompted wider consideration of the influence of the stroke unit environment on patient activity in all sites (research questions and ). . patients and carers played a significant role in highlighting priorities for improvement and sharing the work of co-design (research question ). . there were no significant differences in experiences or outcomes between the full and the accelerated forms of ebcd. accelerated ebcd contextualised to stroke units has the potential to spread across other stroke units and to other acute inpatient settings (research question ). . implementation of ebcd and of the co-designed changes was influenced by a number of factors and organisational processes, including established ward routines that were care and treatment focused rather than activity focused, and staff workload pressures. however, the structured and time-limited process of ebcd in both the full and the accelerated forms legitimised and supported participatory co-production activity. all participants recognised that increased activity needed to doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. be embedded in everyday routines and work in stroke units. this aligned more easily with the existing working practices of therapists, but there were some indications that nursing work could also encompass prompting and supporting more social, cognitive and physical activity. . communication between staff and patients which was patient-centred and supported activity was the most challenging to initiate and sustain (research question ). we now discuss how the create findings compare with those from other research, and the strengths and weaknesses of the study. finally, we discuss the implications for evaluating the implementation, spread and sustainability of ebcd and the overall impact on activity opportunities available for inpatient stroke patients. comparison with other research interventions to promote increased activity on stroke units create is similar to other studies that have set out to increase activity levels on stroke units, and we have shown mixed results. however, most previous research has focused on dose-driven interventions, including circuit class therapy and -day-a-week therapy. these have increased the amounts of therapy provided but have not increased meaningful patient activity outside therapy sessions. a more general approach to the environmental enrichment of stroke units with attention given to cognitive and social activity as well as physical activity is now gaining interest. , the main studies, , which have been conducted in australia and have utilised controlled pre and post designs and are similar to create, have evaluated the impact of a more stimulating environment on inpatient activity. the sample size was greater (n = ) and the measures were focused largely on quantitative outcomes. behaviour mapping results showed an increase in activity levels across all domains and sustained changes at months post intervention. however, in these studies, the stimulating activities and changes made were driven by the perspectives of professionals, with no evidence of patient and carer involvement. the authors did highlight the benefit of using change management methods to address implementation, but, unlike in create, they did not use a specified improvement approach. co-design approaches in acute health care in accordance with the findings of our rapid evidence synthesis, we also found that co-design in acute health-care settings can be challenging and time-consuming to set up. similar to other studies, engaging with co-design and implementing changes were viewed positively by patients, carers and staff. however, unlike many projects that have used ebcd, we incorporated more ‘designerly thinking’ into our project through the activities and support of our co-applicant alastair macdonald. we believe that this enabled greater creativity to emerge through the co-design groups and from the site champions. we found no appreciable difference between the full ebcd cycle used at sites and and the accelerated form used at sites and . this mirrors the finding of locock et al., although, unlike in that study, we developed our trigger films locally in stroke units instead of using a national database. strengths and limitations strengths we believe that the strengths of create lie in the design and the multiple data sources used in our evaluation and intervention (ebcd), and include a considerable range of data from interviews with stroke patients, families and staff (n = ) and ethnographic field work ( hours). this has enabled us to reach a deep level of understanding of the experience for patients, families and staff taking part in co-design, and the staff groups who were less directly involved in co-design, as well as the priorities and impact of the improvements on patient activity. we believe that our staged and iterative approach to qualitative analyses has facilitated an understanding of both the similarities and the discrete conclusions nihr journals library www.journalslibrary.nihr.ac.uk differences between sites, which have informed our recommendations about the use of ebcd as an improvement approach in other stroke units. our process evaluation also drew on multiple data sources, including researcher reflections, which were kept by all members of the research team (fj, dc, kg and sh) throughout the project. this collaborative approach to sharing experiences, insights and analysis has provided a new level of insight into ‘the work’ of co-design in acute health care and what it takes to succeed and to sustain change. we believe the cyclical approach used through ebcd enabled a close relationship to be gained with the research teams based in each site. although this could be viewed as a limitation, the strategies used, such as encouraging teams to seek ways to overcome barriers, involve local community groups to support their work and celebrate their achievements, all helped staff, patients and families to gain a sense of momentum and change. limitations inability to use patient-level sentinel stroke national audit programme data in our protocol, we stated that we would access routinely collected data at ward level to summarise and compare demographic data, age, gender and stroke severity (national institutes of health stroke scale and modified rankin scale) from a cohort of patients pre/post implementation in each unit. however, gaining access to these data proved difficult and the time required to do so did not fit into our project timeline and would have exceeded the data collection period for sites and . we were able to access ssnap acute organisational audit data for sites and , but the repeat of that audit was delayed and had not been conducted before we submitted our final report. we were unable to access organisational audit data for sites and or to add anything on patient-level data on stroke severity/dependency. behaviour mapping as part of our mixed-methods approach we used behavioural mapping, a validated approach developed primarily to observe level and type of physical activity but more recently also used to record social, cognitive and physical activity for individual patients at -minute intervals over -hour periods. although the method was feasible to use in acute stroke units, we believe that our results should be interpreted with the following provisos. of concern were the anomalies that arise when reporting behavioural mapping findings. principally it can be possible for physical activity to be recorded as less across the observation period (epoch) even though the patient may be more socially active; in addition, if a patient is sleeping, the response to ‘no activity’ would be ‘yes’. thus, ‘no activity’ needs to be interpreted with the number of patients sleeping in mind, as this influences the overall ‘no activity’ percentage. behavioural mapping is better utilised in studies where the impact of discrete intervention is measured in the same cohort of patients over short time periods. apart from the concerns about reporting outlined above, we believe that a number of other factors influenced the quality and relevance of behavioural mapping as a reporting method in create. first, we consented patients the day before mapping took place, which led to restrictions in the numbers of possible participants. numbers included ranged from to , which meant that we were mapping the activity behaviour of only a small proportion of patients at any given time. second, as our protocol determined, we did not include scheduled therapy sessions as part of recorded activity, and we also had a number of ‘unobserved’ recordings. for instance, if a patient was at an outside café or in the bathroom, they were not recorded as being active. third, we believe that contextual issues such as staff shortages and the severity of disability of the inpatient caseload had a serious impact on the activity opportunities we could record. nonetheless, the fact that we witnessed many instances of doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. patients spending the majority of their time in bed or at the bedside with no interaction and nothing to do is a potent reminder that more work is needed to increase patient activity outside routine therapy in stroke units. low response rate to patient-reported outcome measures/patient-reported experience measures we chose to use a validated prom/prem tool so that we could gain contextual data about the impact of stroke on patients post discharge and their experiences of being on a stroke unit. however, the return rate was low (< %) across sites, and in discussion with our nihr manager and study steering group we used several strategies to increase this. we initially aimed to collect our pre- implementation prom/prem data retrospectively for patients to coincide with ssnap reporting periods (i.e. quarterly). we increased this to -monthly, which comprised two quarterly ssnap periods, and we carried out repeat mailing and reminders. overall, we believe that the post-implementation data collection period at sites and , which was either side of christmas, had a detrimental effect on the response rate, and, despite our efforts, we managed to reach our target of returned questionnaires at site only. although the prom/prem has been validated for use with neurological inpatients, this is the first time, to our knowledge, that it has been used with stroke inpatients. in addition, the length of the questionnaire could have been a barrier and, overall, we believe that these surveys offered limited additional insight into the impact of create beyond that gained through the semistructured interviews. the challenge of the critical distance of the research team we introduced a number of stages in our protocol to try to reduce researcher bias, such as using a standardised protocol and behavioural mapping tool for recording patient activity episodes and ensuring that recording sessions were spread across a - to -day period to allow maximum opportunity to account for variations in activity at different times of the day and on different days of the week/at weekends and the presence or absence of family members/visitors. our behavioural mapping protocol also excluded individual therapy sessions to reduce the likelihood that increased activity levels would be captured later in the inpatient stay when individuals would be more active in therapy. we were unable to use a purposive sampling approach as recruitment for behavioural mapping proved challenging at all four sites and, thus, given the convenience samples we worked with, we could not select patients at different points in their inpatient stay or with different levels of stroke severity. however, our behavioural mapping results were clearly variable between the pre- and post-ebcd activity periods, indicating that, although patients, relatives and staff may have been more aware of the ebcd project and although opportunities for activity may have increased, this was not necessarily reflected in individual behavioural mapping profiles, which tended to indicate low levels of individually focused activity. we were unsure whether there were any changes in staff behaviour as a result of researchers conducting behavioural mapping and observations/interviews. our field notes and memos show that, across all sites, some early observations raised staff members’ awareness of the project and may have influenced some of their interactions with stroke survivors but, as in most observational studies, this effect quickly dissipated. as observations (pre and post) were extended over sessions over – weeks and interspersed with behavioural mapping recording, staff became used to the researchers’ presence and we observed very little evidence of change in staff behaviour in favour of increased patient activity outside therapy during these (pre or post) periods of observation. we do acknowledge the potential for the research fellows who were involved in supporting ebcd and facilitating co-design groups to develop a sense of ownership and investment in the project at each site but would point to the actual time spent at the sites being episodic, which meant that there was conclusions nihr journals library www.journalslibrary.nihr.ac.uk separation from the day-to-day work on the units. overall, as a research team we had different roles and different levels of involvement. the research leads (fj and dc) had considerably less time in the sites and less involvement in the co-design groups; however, they did conduct (pre and post) observations and interviews and added a different perspective on observed and reported activity from those of the researchers who routinely facilitated ebcd activities. at sites and , quite long periods of time separated the pre and post observations and interviews, and we sought different as well as similar interviewees (i.e. those directly involved and those not involved with ebcd). the process was broadly similar at sites and but, although the overall time was reduced, a gap of around – months remained. as a team, we were mindful of the need for objectivity in reporting on what was observed. in our analysis meetings and in our integration of the data for the process evaluation, we had an opportunity to review field notes, summary memos and researcher reflections, which helped us identify factors that may have influenced the researchers’ perceptions and reporting of activity (or absence of activity) at sites; this included study steering committee members robustly reviewing our presentation of the emerging and final data. however, as stated in chapter , one of the main challenges the researchers faced was that their role included both data collection and the co-ordination of ebcd and co-design meetings. although there were examples of autonomous and proactive behaviours by staff, patients and family members, an unintended consequence of the researchers’ regular presence and willingness to facilitate improvement could have been a reduced commitment among staff to collective action and undertaking the work required to actually implement changes to practices. paradoxically, the absence of researchers in future projects might facilitate greater commitment and engagement from clinical teams, notwithstanding the need for champions to emerge in each site to drive forward the improvement cycle. implications for health care the added value of using co-design to initiate change traditional approaches to improving activity on stroke units have focused largely on setting national targets for therapy intensity. these have failed to have an impact on the stroke unit environment and the range and quality of activity opportunities outside formal therapy provision. we now question the narrow focus of this ‘top-down’ approach to therapy and its lack of consideration of the broader rehabilitation concern of increasing activity. outside the narrow focus of clinical audit, action is required at both national (guideline recommendations) and local levels to increase therapeutic activity outside therapy. this needs to be based on a refocusing on rehabilitation post stroke, needs to be addressed at stroke unit team level (i.e. taking a multidisciplinary approach), and will benefit from the use of participatory service improvement methods such as ebcd. the success of participatory approaches and ebcd used for the first time in acute stroke services lies in the knowledge that patients, families and staff decided and agreed on what mattered most to them as well as what could be achieved. we believe that the strength of ebcd in both its full and its accelerated form is the facilitated, structured, participatory and time-limited process. the nature of the ‘work’ in create was fundamentally different from usual staff or externally driven quality improvement initiatives in stroke, and it prioritised the participation by stroke survivors and their families in more creative, tactile and relational interactions and outputs to improve opportunities for independent and supervised activity. it was also evident that create provided distinctly different experiences for staff who engaged in ebcd and that the changes agreed were driven not by external policy pressures or by local organisational demands, and not by external audit, but rather they were shaped very clearly by the doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. experiences of patients and carers whom staff had recently cared for or treated, and were locally determined by small groups who took responsibility for bringing change about. this motivated groups to work together in co-design meetings to define ways to implement the new working practices, what wenger refers to as ‘communities of practice’ in each site who were central to bringing about change. the involvement of patients and carers increased the accountability of the staff who participated and made it more likely that the planned changes would proceed. co-design also facilitated carers’ and volunteers’ continued involvement in activities and directly contributed to the sustainability of the changes made to the day-to-day working of these stroke units. co-design activities in create also initiated new and ongoing engagement with local people and/or organisations for whom the hospital is a key part of their community. the positive aspect of greater community involvement was notable in one of the london sites threatened with closure at various times. as a result of increased engagement with art communities, create was viewed locally as a ‘good news’ story in terms of providing examples of how co-produced changes improved inpatient services in the ‘local’ hospital. figure shows a mayoral visit that celebrated the opening of the new post-ebcd ward at site . we believe that acknowledgement and celebration of the efforts made by staff, patients and carers – the final part of the cycle of ebcd – is an important factor in raising awareness of change and sustaining achievements. the ongoing challenge of (in)activity in stroke units culture change in any organisation is challenging, and in our project this was no different. the process evaluation highlighted the importance of organisational buy-in but also the challenges of achieving this at unit level and beyond. it was also clear that ebcd provided both a structure and a space for changes aimed at directly improving the experiences of stroke patients and their family carers. as a result of making these changes, the morale and commitment of staff also seemed to improve. nonetheless, although improvements in activity opportunities were observed, the process evaluation also highlighted the challenge of involving and keeping engaged large groups of staff in the participatory change process. similarly, differences in staff members’ perceptions of their role in rehabilitation and enacting this in day-to-day working practices highlighted that interdisciplinary rehabilitation and increased activity promotion across a whole stroke team would require more sustained intervention targeted at how teams work in this context, which was beyond the scope of create. although the tangible improvements to the space and activity opportunities was visible across all stroke units and figure mayoral visit to celebrate changes to ward at site . reproduced from the sutton & croydon guardian with permission from epsom and st helier university hospitals nhs trust. conclusions nihr journals library www.journalslibrary.nihr.ac.uk validated by our qualitative findings, when behaviour mapping was used as an objective measurement tool no consistent change was found in the proportion of time on weekdays and weekend days that stroke patients in the participating units spent on physical, social and cognitive activities. the effectiveness and long-term impact of lengthy periods of co-design work (ranging from to months in this project) on the independent and supervised activity of stroke patients is still uncertain. currently, work routines in participating units and day-to-day interactions between staff and patients are largely task driven, focusing on care needs and delivering scheduled therapy. interactions that facilitate greater social exchange, cognitive activity or physical exercise are relatively uncommon, and we believe that to increase such activity opportunity requires a fundamentally different approach to how therapy and nursing contribution to rehabilitation is viewed and delivered so that stroke unit environments and work practices become more conducive to activity and so that activity is seen as a priority and part of the rehabilitation work of all staff, not only therapists. at all create sites we found concern that ‘something must be done’ and a willingness for staff, patients and families to work together to make improvements. we believe that, for this approach to be used across other stroke units, local facilitation needs to be provided by a member of staff who has protected time to be allocated to this work. change required buy-in and commitment from multiple stakeholders including senior management to validate the shift from achieving national performance targets to a cultural recognition of the therapeutic value of a stroke unit. change was facilitated when stroke unit staff worked with volunteers and people from the community. this will take time, but trigger films such as those developed in this project can help gain traction to make changes, some of which can be initiated quickly and relatively cheaply (e.g. photo-hangers by bedsides, and the ‘a little something about me’ board). costs and sustainability it was not within the remit of create to evaluate the cost of ebcd in its full or accelerated form, but we found no appreciable difference in the impact or extent of changes between the full and the accelerated ebcd cycles. we therefore conclude that accelerated ebcd is a feasible and efficient improvement method in stroke units and other acute care settings. however, we believe, based on our findings, that to streamline the processes further would be a risk to its success. each of our sites has highlighted inherent contributors to effecting change in such a complex clinical environment, including having sufficient time to build a community of practice through the co-design work. time is critical to the development of a sense of responsibility to the process (i.e. to deliver what was agreed), and to plan for and enact change, which often involved working with others to navigate bureaucracy and required the creativity and resourcefulness of co-design team members. this was seen at site , when the delay led a general manager and the head of nursing to expedite changes and seek solutions to funding issues, such as decorating the bays themselves. at site , the stroke team’s fundraising efforts were recognised by the trust chief executive, who agreed to match the amount raised. finally, a stroke physician at site , frustrated by delays, brought about a solution to the lack of ipad stands by repurposing research and development funds. we believe that these actions would not have been possible within a shorter time frame. sustainability is also difficult to measure, and this too was influenced by operational and structural changes outside our control, such as hospital redesigns and staff shortages. post completion, each site continued to make use of the activity improvements and some added further to these. for example, at site the collaboration with local artists continued and a number of activities have been delivered for patients at weekends, culminating in a new mural and artwork in the ward space. at site , staff meetings that used to take pace in the reclaimed day room now take place in a shared therapy office between the rehabilitation room and the acute ward. at site , the new shared kitchen facility has been completed and this space is now accessed by staff, patients and families. at site , the day room previously used only for wheelchair storage has been maintained as a new activity space. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. the wheelchairs were moved to a room on the floor above and staff have to factor collecting and returning these wheelchairs into their working day; however, there have been no reports of this process eroding therapy time or inconveniencing staff. in addition, at site there is continued use of the open window area that was previously used mainly for staff breaks, equipment storage and display of stroke association materials. equipment is now stored in other areas close to the ward nurses’ station, and staff breaks are taken off ward or in the ward offices. implications for research the cost-effectiveness of the methods used in create are unknown, although quality improvement methods, such as the accelerated ebcd used at sites and could be highly cost-effective if improvements can reduce the inactivity of inpatient stroke patients, contribute to an increase in independence in activities of daily living and reduce length of stay. equally, the participatory approaches used in ebcd can have a positive impact on the morale, meaning and purpose of staff in the face of increasing staff shortages and caseload pressures. staff in our study felt that there was little time for any creative thought and relational work in their day-to-day practice, and the opportunity to take part in create, to make a difference and to do something positive, was viewed as constructive across all stroke units. we believe that create has added to the knowledge about co-design in acute health care and that our methods could be applied and evaluated across other stroke units and other acute health-care environments. our findings support greenhalgh et al.’s key principles for achieving impact in co-design, including the need ‘to frame this research as a creative enterprise with human experience at its core’ and an emphasis on process, such as the nature of relationships, leadership style, governance and facilitation arrangements. our rapid evidence synthesis highlighted common barriers encountered in co-production approaches and these barriers were similar in this study, which was similarly thwarted at times by a lack of resources or managerial authority to bring changes. however, unlike other research projects, we had little difficulty recruiting patients and carers and retaining them in the project. this, we believe, was largely a result of the dedicated efforts of our local researchers and the willingness of staff in the co-design groups to both engage with and support stroke survivors and their families to participate in the ebcd process. any further research in this field requires early engagement and commitment from estates, general management, senior executives, and communications at the start of the project and to utilise methods to retain interest throughout and after completion. the stakeholder mapping exercise at the start of ebcd was critical. early consideration of community/voluntary sector engagement is also important and is a key learning point from sites and , which used the full ebcd cycle. this enabled awareness-raising among and interest from a range of local community groups, which subsequently added to activity opportunities through art, exercise groups, reading and music. finally, several research questions have emerged from our study, which are as yet unexplored: l what are the additional steps that would be required to change the culture of activity on a stroke unit? in particular, what changes are required to achieve greater consistency in the use of enabling communication by all staff? l can the create accelerated ebcd approach using stroke-specific trigger films be used across other acute stroke units, and what would be the contextual adaptations required to enable similar levels of improvement? l what are the ‘costs’ of setting up accelerated ebcd in terms of time and people? how sustainable is the approach in a stroke unit and how frequently should an ebcd cycle run? conclusions nihr journals library www.journalslibrary.nihr.ac.uk l are there transferable lessons outside a stroke unit environment (e.g. does it matter whether the ward is ‘specialist’, or for short, medium or long stay)? l what additional tools and methods are required to provide a more effective way of measuring any changes in activity, given our concerns about the sensitivity of behavioural mapping? l what additional approaches would be required to change the culture of activity on a stroke unit; how can ‘enabling activity’ be viewed as the work of all staff, including nursing staff? l to what extent can patients/families and local communities support sustained activity, providing greater opportunities for social, cognitive and physical activity outside scheduled therapy provision? l what is the longevity of the changes made, and will the create stroke units continue to work with patient and carer groups to review these and make improvements? l what aspects of ebcd promote lasting change? doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. chapter dissemination throughout the study, the project leads and the research team have disseminated the project andemergent findings in a varied range of conferences, seminars and journals. conferences and seminars include: l uk stroke forum , – november , liverpool, uk l uk stroke forum , – november , liverpool, uk l uk stroke forum , – december , telford, uk l how copro event, march , st george’s, university of london, london, uk l king’s college london, research seminar, november l south london stroke research network meeting, june l european stroke organisation conference (esoc) , – may , prague, czech republic l esoc , –may , gothenburg, sweden l health services research uk (hsr uk) conference, – july , nottingham, uk l esoc , – may , milan, italy l hsr uk, conference, – july , manchester, uk. the rapid evidence synthesis has been published: l clarke d, jones f, harris r, robert g, collaborative rehabilitation environments in acute stroke (create) team. what outcomes are associated with developing and implementing co-produced interventions in acute healthcare settings? a rapid evidence synthesis. bmj open ; :e . research teams have also held ‘feedback events’ at all sites to disseminate findings to all stakeholders. at sites and , local newspapers published articles about the project and the changes that occurred on the wards. create has gained followers on its twitter account and we continue to update our followers about the project via our account @create_project_. in the longer term, our dissemination routes are to produce guidance for stroke units to use accelerated ebcd on their units to increase activity, and to run a training session at the uk stroke forum. we will visit stroke units and spread this work through our national and international networks. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. acknowledgements contributions of authors fiona jones (https://orcid.org/ - - - ) (professor of rehabilitation research) was chief investigator. she co-designed and led the study, collected and analysed data, wrote the first draft of chapters – , and the summary sections in chapters – , and contributed to analysis and interpretation of the empirical findings and to report writing. karolina gombert-waldron (https://orcid.org/ - - - ) (research associate) was project manager for sites and . she facilitated the co-design process, collected and analysed data and contributed to all sections of the report. stephanie honey (https://orcid.org/ - - - ) (research associate) was project manager for sites and . she facilitated the co-design process and collected and analysed data. geoffrey cloud (https://orcid.org/ - - - ) (consultant stroke physician) was a co-applicant. he provided clinical advice from a local and national stroke perspective, and contributed to analysis and interpretation of the empirical findings and to report writing. ruth harris (https://orcid.org/ - - - ) (professor of health care for older adults) was a co-applicant. she provided input into the ebcd and co-design activities, contributed to analysis and interpretation of the empirical findings and report writing, and supported the rapid review. alastair macdonald (https://orcid.org/ - - - ) (professor) was a co-applicant. he provided input into the ebcd and co-design activities, supported with visual illustration of material in the report, and contributed to analysis and interpretation of the empirical findings and to report writing. chris mckevitt (https://orcid.org/ - - - ) (professor of social sciences & health) was a co-applicant. he contributed to the analysis and interpretation of the empirical findings and to report writing. glenn robert (https://orcid.org/ - - - ) (professor) was a co-applicant. he provided input into the ebcd and co-design activities, contributed to analysis and interpretation of the empirical findings and to report writing, and supported the rapid review. david clarke (https://orcid.org/ - - - ) (associate professor, stroke care) co-designed and co-led the study. he facilitated the co-design process, was lead investigator for sites and , collected and analysed data, wrote the first draft of the process evaluation, and contributed to analysis and interpretation of the empirical findings and to report writing. contributions of others research support tino kulnik conducted pre-implementation interviews for site and supported several co-design events and the input of behavioural mapping data. alessia costa supported ethnographic fieldwork at site . doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - https://orcid.org/ - - - louisa-jane burton and sadia ahmed supported the behavioural mapping and prom/prem analysis and interpretation. carole pound supported co-design events at site . parminder dhiman carried out data collection at site (prom/prem and behavioural mapping). study steering committee dr rebecca palmer (chairperson) dr gillian cluckey amanda north pamela beaumont jeanette gledhill dr david meads. site and support principal investigators at all sites: dr paul o’mahoney and dr janet putteril (site ), dr liz iveson (site ), dr camille julien and dr karen kee (site ), and dr anand nair (site ). participants and co-design groups at all collaborating sites – members of staff, patients and family members. community support hana horack and team imagineers have applied for funding and run art workshops for the patients at weekends at our first site. cherilyn yeates from croydon arts and music gave time to paint a mural at site . croydon arts and music give concerts at the weekends at site . the reader charity and the stroke association, in particular jack blaney, supported the co-design process at site . the uk stroke forum acknowledged create through the patient, carer and public involvement prize. publication clarke d, jones f, harris r, robert g, collaborative rehabilitation environments in acute stroke (create) team. what outcomes are associated with developing and implementing co-produced interventions in acute healthcare settings? a rapid evidence synthesis. bmj open ; :e . data-sharing statement all available data can be obtained from the corresponding author. acknowledgements nihr journals library www.journalslibrary.nihr.ac.uk patient data this work uses data provided by patients and collected by the nhs as part of their care and support. using patient data is vital to improve health and care for everyone. there is huge potential to make better use of information from people’s patient records, to understand more about disease, develop new treatments, monitor safety, and plan nhs services. patient data should be kept safe and secure, to protect everyone’s privacy, and it’s important that there are safeguards to make sure that it is stored and used responsibly. everyone should be able to find out about how patient data are used. #datasaveslives you can find out more about the background to this citation here: https://understandingpatientdata.org.uk/ data-citation. doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, 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community development centre; . url: www.scdc.org.uk/what/co-production- how-we-make-difference-together (accessed september ). . boyd h, mckernon s, mullin b, old a. improving healthcare through the use of co-design. n z med j ; : – . . tollyfield r. facilitating an accelerated experience-based co-design project. br j nurs ; : – . https://doi.org/ . /bjon. . . . . walshe k. pseudoinnovation: the development and spread of healthcare quality improvement methodologies. int j qual health care ; : – . https://doi.org/ . /intqhc/mzp . keith ra, cowell ks. time use of stroke patients in three rehabilitation hospitals. soc sci med ; : – . https://doi.org/ . / - ( ) -x . rosbergen ic, grimley rs, hayward ks, brauer sg. the impact of environmental enrichment in an acute stroke unit on how and when patients undertake activities. clin rehabil ; : – . https://doi.org/ . / . wenger e. communities of practice: learning, meaning, and identity. cambridge: cambridge university press; . . palmer j. stroke unit transformed at st helier hospital. sutton & croydon guardian, february . url: www.yourlocalguardian.co.uk/news/ .stroke-unit-transformed- at-st-helier-hospital/ (accessed december ). references nihr journals library www.journalslibrary.nihr.ac.uk https://doi.org/ . / https://doi.org/ . /s - - - https://doi.org/ . / - . https://doi.org/ . /j. - . . .x https://www.scdc.org.uk/what/co-production-how-we-make-difference-together https://www.scdc.org.uk/what/co-production-how-we-make-difference-together https://doi.org/ . /bjon. . . . https://doi.org/ . /intqhc/mzp https://doi.org/ . / - ( ) -x https://doi.org/ . / https://www.yourlocalguardian.co.uk/news/ .stroke-unit-transformed-at-st-helier-hospital/ https://www.yourlocalguardian.co.uk/news/ .stroke-unit-transformed-at-st-helier-hospital/ appendix sentinel stroke national audit programme key indicators and overview of sentinel stroke national audit programme organisational data key indicators performance-level indicators l brain scanning. l stroke unit. l clot-busting treatment. l specialist assessments. l occupational therapy. l physiotherapy. l speech and language therapy. l team working. l standards met by discharge. l discharge process. table overview of ssnap organisational data performance-level indicator april–july december–march january–march october–december (not available at time of publication) site site site site site site site site brain scanning b c b c b c stroke unit d e e↓ d↑ e c clot-busting treatment b e c↓ c↑ d b specialist assessments d c d b↑ d c occupational therapy a b a b a a physiotherapy b b a↑ b b b speech and language therapy a e a c↑ b c team working c d c b↑ c c standards met by discharge a d b↓ b↑ a b discharge process a a a b↑ a a doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. appendix topic guide for patients and family members pre implementation can you tell me about your experiences of being a patient on/or visiting a relative on the stroke unit? what were some memorable experiences (positive or negative)? can you tell me something about a usual day? what did/do you spend your time doing? patient: what opportunity was there for you to be active or do the things you want to do? how much were you given the chance to have a go at things for yourself, and do the things you wanted to practice? what opportunities are there for patients/families to be involved with their own activities? can you give me some examples of this, positive and negative? patient and staff: overall, what did you spend most of your time doing when on the stroke unit? not just during the day – what about in the evenings, weekends, or at other times? what were your overall impressions of the ward and how it worked? how involved do you feel in your own therapy while a patient on the ward – what did you do outside your therapy sessions? before or after your physio/ot, speech and language therapy, what did you do? patient: what is the main reason for not practising or being active (in any way – this could mean doing a game, talking with others, not just physical activity)? if there was something you wanted to do, what stopped you being able to do it? were you encouraged by staff? families: what impression did you have of the ward and how it worked? how much were you encouraged or did you become involved with helping your family member with their activities? if you had to describe the experience of being on the stroke unit to anyone else, what would you say? doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. appendix topic guide for interviews with members of staff pre implementation can you tell me about your experiences of working on the stroke unit? what were some memorable experiences (positive or negative)? can you tell me something about a usual day? can you take me step by step through what a usual day would look like, or was like? what did you do; if i was a fly on the wall what would i see you spending most of your time doing? what opportunities are there for patients/families to be involved with their own activities? can you give me some examples of this, positive and negative? patient and staff: overall, what did you spend most of your time doing when on the stroke unit? not just during the day – what about in the evenings, weekends, or at other times? what are your overall impressions of the ward and how it works? how much do patients do outside the scheduled therapy sessions? how much unsupervised therapy do you see happening or encourage? staff: what is the main reason patients are not active outside scheduled therapy sessions? if there was anything you would have liked to have provided for patients, what stopped you doing it? did you hear about the create study? how did you hear about create? what are your thoughts on create? is there anything else you would like to note about create? if you had to describe the experience of working in the stroke unit to anyone else, what would you say? doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. appendix topic guide for patients and family members post implementation l setting the scene: what co-design group were you part of? what did you do in your group? what was your contribution? l feeling: what did you like/did not like? how did you like the experience-based co-design process (prompt – interview, film, feedback meetings)? l group: how did you perceive your place in the co-design group? what did you think about the way in which group members worked with each other? what could have been improved? l outcomes: are you happy with the changes made on the stoke unit? did it meet your expectations? how could the outcomes be improved? are some outcomes visible to you? if yes, how? if no, why do you think they are not being implemented? are you satisfied with the outcomes? how could they be improved? what are things that help or hinder change from taking place? how do you think they can be sustainable? l facilitation: what did you think about the help and support provided for the co-design groups? how could it have been better? challenges? l the process: were there particular points in the process that you liked/did not like? how did you feel/what did you think at particular points in time? l for family members: what do you think the impact on your family member was? positive/negative consequences of taking part in create? why? l personal outcomes: what will you personally take away from participating in the study? l any other thoughts? doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. appendix topic guide for members of staff post implementation l setting the scene: what group were you part of? what did you do in your group? what was your contribution? l have you noticed anything being different in the unit? in terms of patient experience? in terms of activity? l feeling: how did you like the process? what did you like/did not like? l group: how did you perceive your place in the group? what did you think about the group dynamics? what did you like/not like? what could have been improved? l outcomes: are you happy with the outcomes? did it meet your expectations? how could the outcomes be improved? are some outcomes visible to you? if yes, how? if no, why do you think they are not being implemented? are you satisfied with the outcomes? how could they be improved? l what are barriers to/facilitators of introducing and embedding the interventions to the unit(s)? l facilitation: what did you think about the overall process? do you think working together with the patients and family members made a difference? how was create different from other improvement projects you have been involved in? how could it have been better? challenges? l the process: how did you perceive the process? were there particular points in the process that you liked/did not like? how did you feel/what did you think at particular points in time? what had been the most important parts of the project? and why did you think they were important? l work balance: in what ways has (or did) the ebcd process impact on or affect your working practice? were there any challenges? l long-term outcomes: what will you take away from the process? l any other thoughts? doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. appendix example ethnographic observations timetable doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. sunday november monday november tuesday november wednesday november thursday november friday november saturday november late ob kg early ob early ob identify bm patients (need to be able to consent). talk to them about the study. leave pis. consent bm patients. first check capacity. fill out pt reg. and pt detail crfs. leave in site file bm early late ob early ob sunday november monday november tuesday november wednesday november thursday november friday november saturday november late ob late ob late ob identify bm patients (need to be able to consent). talk to them about the study. leave pis consent bm patients. first check capacity. fill out pt reg. and pt detail crfs. leave in site file bm late sunday november monday november tuesday november wednesday november thursday november friday november saturday november early ob identify bm patients (need to be able to consent). talk to them about the study. leave pis consent bm patients. first check capacity. fill out pt reg. and pt detail crfs. leave in site file late bm early ob bm, behavioural mapping; crfs, case report forms; ob, ethnographic observation; pis, patient information sheet; pt, patient. obs: early, . – . or . – . ; late, . – . bm: early, . – . or . – . ; late, . – . . on average, five early, five late observations; three bms including weekends. a p p e n d ix n ih r jo u rn a ls l ib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k appendix behavioural mapping protocol create (collaborative rehabilitation in acute stroke) behavioural mapping protocol quick reference guidelines for completing observation day. aims to estimate what proportion a weekday and weekend day, stroke survivors recovering on ward [. . .] spend in physical, social and cognitive activities. the day before check with the staff which patients are suitable for observation (n = are required). the criteria for inclusion are: . inpatient with a confirmed diagnosis of stroke. . not being managed palliatively. . able to understand english or have a family member who can act as an interpreter. . able to give full informed consent on the day before the behavioural mapping. . patient is happy to participate. check that the patients will consent to be observed. you may want to explain to them about the research and tell them that you will be watching them every minutes throughout the day to gather important information about their activity so that we may ultimately improve the care of people with stroke. tell staff which patients have consented to participate. confirm what bed the patients will be in the following day. you will need to check this again in the morning as patient locations change. also check that the patients are not going home that day. if there is a plan for the patient to be discharged in the morning then do not bother including them. if the patient may be discharged later that day, it is worth including them just in case. spreadsheets prepare the behavioural mapping spreadsheet so that no copying is required on the day of observations, including adding the date and time, in advance. procedure the following procedure reflects what was performed as a part of the enriched environment post stroke trial. we have adapted this protocol and the following procedures to meet the requirements of the create study. any modifications to the protocol must be agreed with fiona jones and david clarke. on the day observation time and breaks observations should be conducted between . and . (nine and a half hours) at -minute intervals. this will generate observations per day (allowing for breaks). doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. schedule four breaks of minutes each throughout the day by picking a time out of a hat. mark your break times on the sheet. standardised route at the commencement of each -minute observation period, the researcher will begin observations from the same location, designated as the start location. the researcher will then proceed along a predetermined route, completing the standardised observational spreadsheet for each patient as they become visible. the researcher will then back track along this same route completing data for patients who may have not been observed during the initial walkthrough. make sure you know where the quiet rooms, tv rooms and other common locations that patients may use are located. if they are adjacent to the ward, these should be visited. duration of each observation during each -minute interval, the data for each patient will be based on an observation made by the researcher over a period no longer than seconds. the researcher will position themselves so that the patient can be easily seen (but at the same time taking steps to be inconspicuous) and will then note where they are, who they are with and what they are doing. the patient can be recorded as performing more than one type of activity (i.e. physical, cognitive or social) at once. once the researcher has noted all this information, data collection for this patient is complete and the researcher will move onto the next patient. observations begin at the commencement of each -minute interval (i.e. . a.m., . a.m., . a.m., . a.m., etc.). unobserved epochs ( -minute period) if the researcher is unable to either view or clearly view a patient during a -minute observation period, firstly, this observation should be clearly marked as unobserved. then when clearly visible once more, the researcher is to either question the patient, staff or carer regarding where, who and what they themselves or the patient were doing. if activity is estimated via this process, this should be noted in the comments section as est and the appropriate boxes completed. activity estimates should err on the side of underestimating the activity. if this information is not easily or reliably able to be obtained, the patient should be marked as ‘unobserved’. explanation of terms used on spreadsheet location where in the hospital the patient is located (see list below). the patient can only ever be in one location. bedside: within and around own room or bed. in bed. therapy: gym and all other allied health therapy/meeting rooms (includes ot kitchen). communal areas: dining room/day room/reception area/nurses station/hallway. amenities: toilet, shower or wash basin. offsite: attending tests at another facility/home visit. outside: cafe/walking or being wheeled in corridor/meeting room (i.e. relatives’ room). people present who is with the patient? appendix nihr journals library www.journalslibrary.nihr.ac.uk more specifically, ‘people present’ is defined as any person in the near vicinity of the patient which is conducive to interaction. there is potential for more than one type of person to be with the patient. alone: no person/people in the near vicinity of the patient that is conducive to interaction. medical staff: doctors. registered nurse. student nurse. hca: health-care assistant. pt: physiotherapist. ot: occupational therapist. st: speech and language therapist. therapy student. therapy assistant. ward orderly/kitchen staff/cleaner. patients: patients within their own room or bay and patients visiting from elsewhere in the hospital. visitors: including patient’s own and neighbouring patient’s family and friends. other: contractors or those non-specified. interacting: state if patient is interacting with the person (people) present or not. y for yes, n for no. what patient is doing (type of activity) activity: a specific deed, action, function, or sphere of action. physical activity: everyday, personal, recreational or occupational activities that require physical skills and utilise strength, power, endurance, flexibility, range of motion or agility. examples include: sitting unsupported, standing, walking, actively transferring with or without assistance, upper limb (ul) exercises, dressing, eating and grooming. repositioning in bed: state who is repositioning the patient. i for independent, n for nurse, t for therapist, c for carer. transfers: state who is transferring the patient. i for independent, n for nurse, t for therapist, c for carer. mobilising: state who is mobilising the patient. i for independent, n for nurse, t for therapist, c for carer. adls (activities of daily living): everyday activities generally involving functional mobility and personal care, such as bathing, brushing teeth, dressing, toileting and eating. (these activities are sometime referred to as padls – personal activities of daily living. for the purposes of this research we will use the term adls.) doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. dadls (domestic activities of daily living): these include household tasks such as shopping, cooking, laundry and cleaning. independent practice: patient practising tasks or exercises prescribed by the therapists. cognitive activity: any non-physical leisure activity which involves the patient actively engaging in a mental task such as: reading a book, magazine or newspaper, listening to music or the radio, crosswords, puzzles, games, speech language exercises, ot cognitive exercises, video games, talking in a group situation, writing, computer use, playing a musical instrument, watching the television. social activity: any interaction which involves verbal communication with people present or through telecommunication devices, and other non-verbal interactions. these include: talking, laughing, crying, touching, kissing, holding, telephone, mobile phone, e-mail, group activities, internet forum use. for the purpose of analysis, social activity will be defined as those observations when the patient is interacting with the people present in the above outlined verbal and non-verbal ways. additionally, observations made when the patient was communicating with others through the use of either a telephone or during online activities will also be included in the estimations of time spent in social activities. distinguishing between categories reading and writing: is to be categorised as a cognitive activity. group activities: if observed in group activities, there is the potential for the patient to be engaged in more than one type of activity. for example, talking while performing upper limb tasks in an upper limb group. if though, on observation the patient is in a position or situation conducive to interaction (as per the definition of ‘people present’), and no physical activity is observed, only social activity will be recorded. appendix nihr journals library www.journalslibrary.nihr.ac.uk appendix rapid evidence synthesis search strategy (medline example) database: ovid medline(r). date of search: february . date range searched: to november week . . co-produc*.tw. ( ) . coproduc*.tw. ( ) . co design*.tw. ( ) . codesign*.tw. ( ) . co creat*.tw. ( ) . cocreat*.tw. ( ) . (co research and design).tw. ( ) . experience based design*.tw. ( ) . participatory design*.tw. ( ) . (experience adj design).tw. ( ) . (evidence* adj design*).tw. ( ) . ebc?.tw. ( ) . collaborative design.tw. ( ) . human centred design.tw. ( ) . human centered design.tw. ( ) . people centred design.tw. ( ) . people centered design.tw. ( ) . inclusive design.tw. ( ) . practice led design.tw. ( ) . practice based design.tw. ( ) . interactive design.tw. ( ) . open design.tw. ( ) . user centred design.tw. ( ) . user centered design.tw. ( ) . or/ - [co-design] ( ) . (acute adj (setting* or hospital* or care or healthcare)).tw. ( , ) . ((secondary or speciali?ed) adj care).tw. ( ) . hospital care.tw. ( ) . exp hospitals/ ( , ) . hospitalization/ ( , ) . (hospitali?ation* or hospitali?ed).tw. ( , ) . inpatients/ ( , ) . inpatient*.tw. ( , ) . emergency medicine/ ( ) . emergency treatment/ ( ) . emergency hospital admission*.tw. ( ) . emergency hospitali#ation.tw. ( ) . critical care/ ( , ) . ambulatory care/ ( , ) . urgent care.tw. ( ) . or/ - [acute terms] ( , ) doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. . delivery of health care/ ( , ) . efficiency, organizational/ ( , ) . efficiency/ ( ) . health services research/ ( , ) . "outcome assessment (health care)"/ ( , ) . patient outcome assessment/ ( ) . exp program evaluation/ ( , ) . quality assurance, health care/ ( , ) . quality improvement/ ( ) . quality indicators, health care/ ( , ) . quality of health care/ ( , ) . (bench mark* or benchmark*).tw,kf. ( , ) . (delivery adj health*).tw,kf. ( , ) . (efficien* adj (assess* or assurance* or evaluat* or improv* or indicat* or measur* or test*)).tw,kf. ( , ) . (performance adj (assess* or assurance* or evaluat* or improv* or indicat* or measur* or test*)).tw, kf. ( , ) . (outcome* adj (assess* or assurance* or evaluat* or improv* or indicat* or measur* or test*)).tw,kf. ( , ) . (program* adj (assess* or assurance* or evaluat* or improv* or indicat* or measur* or test*)).tw,kf. ( , ) . or/ - [outcome or evaluation terms] ( , ) . and and [co-design and acute care and outcome or evaluation terms] ( ) . exp animals/not humans.sh. ( , , ) . not [human only studies] ( ) . limit to (english language and yr=" - ") ( ). inclusion criteria reports research using a co-creation or co-production, or co-design or experience-based co-design approach in an acute health-care setting. reports patient or staff or organisational outcomes resulting from research using a co-creation, co-production, co-design, experience-based co-design approach in an acute health-care setting. outcomes of interest include: l any measure of the outcome of co-produced interventions on patient focused quality improvements in acute health-care settings as reported by patients or families or caregivers, or health service providers l including patient-reported outcome measures and patient- or staff-reported experience measures l using qualitative or quantitative data. acute health-care settings include: l emergency departments/accident and emergency departments l adult inpatient facilities, including acute medical or surgical admission units (often termed maus or saus), acute medical or surgical units, acute trauma units, acute neurological units, intensive or critical care units, acute care of the elderly or geriatric units, medical oncology or cancer services l adult outpatient facilities including medical, surgical, trauma, neurology, care of the elderly or geriatrics, medical oncology or cancer services. appendix nihr journals library www.journalslibrary.nihr.ac.uk appendix demographic information characteristic site pre, n (%) site pre, n (%) site pre, n (%) site pre, n (%) site post, n (%) site post, n (%) site post, n (%) site post, n (%) ethnicity white ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) asian/asian british ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) black/black british ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) mixed ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) chinese ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) other ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) missing ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) total ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) sex male ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) female ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) missing ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) total ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) age range (years) – ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) – ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) – ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) – ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ≥ ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) missing ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) total ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) marital status single ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) married ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) remarried ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) separated ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) widowed ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) divorced ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) missing ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) total ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) highest level of education no qualifications ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) o level/cse/gcse ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) a/as level ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) first degree ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. characteristic site pre, n (%) site pre, n (%) site pre, n (%) site pre, n (%) site post, n (%) site post, n (%) site post, n (%) site post, n (%) higher degree ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) nvq/hnc/hnd ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) other ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) missing ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) total ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) first stay on unit? no ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) yes ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) missing ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) total ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) length of stay < month ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) – months ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) – months ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) missing ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) total ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) discharge destination home ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) to supported accommodation ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) to stay with friends or relatives ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) to a nursing home ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) other ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) missing ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) total ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) who completed the questionnaire? the person who was the patient in the hospital ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) a friend or relative of the patient ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) both the patient and a friend or relative together ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) the patient with the help of a health professional ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) missing ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) total ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) a level, advanced level; as level, advanced subsidiary level; cse, certificate of secondary education; gcse, general certificate of secondary education; hnc, higher national certificate; hnd, higher national diploma; nvq, national vocational qualification; o level, ordinary level. appendix nihr journals library www.journalslibrary.nihr.ac.uk appendix patient-reported outcome measure data doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. outcome site pre (autumn ) site post (october ) site pre (september ) site post (october ) site pre (october ) site post (october ) site pre (february ) site post (october ) since your stroke, how much difficulty do you have dressing yourself fully? (%) no difficulty at all slight difficulty some difficulty a lot of difficulty i cannot dress myself fully since your stroke, how much difficulty do you have moving around all areas? (%) no difficulty at all slight difficulty some difficulty . . a lot of difficulty . . i cannot move around all areas of my home . . since your stroke, how satisfied are you with your overall ability to perform daily activities in and around the home? (%) completely satisfied . . mostly satisfied fairly satisfied . . not very satisfied . . completely dissatisfied . . since your stroke, how much difficulty do you have shopping for or carrying a few items when at the shops? (%) no difficulty at all slight difficulty some difficulty a lot of difficulty i cannot shop for and carry a few items a p p e n d ix n ih r jo u rn a ls l ib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k outcome site pre (autumn ) site post (october ) site pre (september ) site post (october ) site pre (october ) site post (october ) site pre (february ) site post (october ) since your stroke, how independent are you in your ability to move around your local neighbourhood? (%) i am completely independent i prefer to have someone else with me i need occasional assistance from someone i need assistance much of the time i am completely dependent on others since your stroke, how often do you feel bored with your free time at home? (%) i am never bored with my free time a little of my free time some of my free time most of my free time all of my free time since your stroke, how would you describe the amount of communication between you and your friends/associates? (%) a great deal quite a lot some a little bit none since your stroke, how satisfied are you with the level of interests and activities you share with your friends/associates? (%) completely satisfied mostly satisfied fairly satisfied not very satisfied completely dissatisfied d o i: . /h sd r h e a lth s e rv ice s a n d d e liv e ry r e se a rch v o l. n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o .t h is w o rk w a s p ro d u ce d b y jo n e s et a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riv a te re se a rch a n d stu d y a n d e x tra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro v id e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d v e rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls l ib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e v a lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n iv e rsity o f s o u th a m p to n s cie n ce p a rk ,s o u th a m p to n s o n s , u k . outcome site pre (autumn ) site post (october ) site pre (september ) site post (october ) site pre (october ) site post (october ) site pre (february ) site post (october ) since your stroke, how often do you visit friends/others? (%) most days at least once a week at least once a fortnight once a month or less never since your stroke, how do you feel about your appearance when out in public? (%) perfectly happy slightly self-conscious fairly self-conscious very self-conscious i try to avoid going out in public mobility (%) no problems walking about some problems in walking about confined to bed self-care (%) no problems with self-care some problems washing or dressing unable to wash or dress self usual activities (%) no problems performing usual activities some problems performing usual activities unable to perform usual activities a p p e n d ix n ih r jo u rn a ls l ib ra ry w w w .jo u rn a lslib ra ry.n ih r.a c.u k outcome site pre (autumn ) site post (october ) site pre (september ) site post (october ) site pre (october ) site post (october ) site pre (february ) site post (october ) pain/discomfort (%) no pain or discomfort moderate pain or discomfort extreme pain or discomfort anxiety/depression (%) not anxious or depressed moderately anxious or depressed extremely anxious or depressed symptoms (%) no symptoms at all i have a few symptoms but these do not interfere with my daily life i have symptoms which have caused some changes in my life but i am still able to look after myself i have symptoms which have significantly changed my life and i need some help in looking after myself i have quite severe symptoms which mean i need to have help from other people but i am not so bad i have major symptoms which severely handicap me and i need constant attention day and night d o i: . /h sd r h e a lth s e rv ice s a n d d e liv e ry r e se a rch v o l. n o . © q u e e n ’s p rin te r a n d c o n tro lle r o f h m s o .t h is w o rk w a s p ro d u ce d b y jo n e s et a l. u n d e r th e te rm s o f a co m m issio n in g co n tra ct issu e d b y th e s e cre ta ry o f s ta te fo r h e a lth a n d s o cia l c a re . t h is issu e m a y b e fre e ly re p ro d u ce d fo r th e p u rp o se s o f p riv a te re se a rch a n d stu d y a n d e x tra cts (o r in d e e d , th e fu ll re p o rt) m a y b e in clu d e d in p ro fe ssio n a l jo u rn a ls p ro v id e d th a t su ita b le a ck n o w le d g e m e n t is m a d e a n d th e re p ro d u ctio n is n o t a sso cia te d w ith a n y fo rm o f a d v e rtisin g . a p p lica tio n s fo r co m m e rcia l re p ro d u ctio n sh o u ld b e a d d re sse d to : n ih r jo u rn a ls l ib ra ry, n a tio n a l in stitu te fo r h e a lth r e se a rch , e v a lu a tio n , t ria ls a n d s tu d ie s c o o rd in a tin g c e n tre , a lp h a h o u se , u n iv e rsity o f s o u th a m p to n s cie n ce p a rk ,s o u th a m p to n s o n s , u k . appendix patient-reported experience measure data site response (%) mostly agree mostly disagree not sure not applicable when i arrived, i was given information about the unit and what would happen during my stay site pre site pre site pre site pre site post site post site post site post the facilities on the unit were good site pre site pre site pre site pre site post site post site post site post there was somewhere secure to keep my belongings site pre site pre site pre site pre site post site post site post site post i was able to discuss personal matters in private site pre site pre site pre site pre site post site post doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. site response (%) mostly agree mostly disagree not sure not applicable site post site post there were enough things to do in my free time site pre site pre site pre site pre site post site post site post site post there was a friendly atmosphere on the unit site pre site pre site pre site pre site post site post site post site post i felt the staff really cared about me site pre site pre site pre site pre site post site post site post site post the staff worked well as a team site pre site pre site pre site pre site post site post site post site post appendix nihr journals library www.journalslibrary.nihr.ac.uk site response (%) mostly agree mostly disagree not sure not applicable i felt able to talk to the staff about any problems i had site pre site pre site pre site pre site post site post site post site post i was asked what i wanted to achieve during my stay site pre site pre site pre site pre site post site post site post site post i felt as though the staff and i were partners in the whole process of care site pre site pre site pre site pre site post site post site post site post the staff kept me informed every step of the way site pre site pre site pre site pre site post site post site post site post doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. site response (%) mostly agree mostly disagree not sure not applicable my family or carer was involved in discussions about my treatment if i wanted them to be site pre site pre site pre site pre site post site post site post site post i am happy with the amount of therapy or treatment i received for (where applicable) swallowing problems site pre site pre site pre site pre site post site post site post site post speech and communication site pre site pre site pre site pre site post site post site post site post improving mobility site pre site pre site pre site pre site post site post site post site post appendix nihr journals library www.journalslibrary.nihr.ac.uk site response (%) mostly agree mostly disagree not sure not applicable independent living site pre site pre site pre site pre site post site post site post site post continence site pre site pre site pre site pre site post site post site post site post i received enough emotional support site pre site pre site pre site pre site post site post site post site post i felt well-supported and prepared for my discharge site pre site pre site pre site pre site post site post site post site post doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. site response (%) mostly agree mostly disagree not sure not applicable i am satisfied with progress made during my stay site pre site pre site pre site pre site post site post site post site post appendix nihr journals library www.journalslibrary.nihr.ac.uk appendix patient-reported experience measure data: feelings feeling site pre site post site pre site post site pre site post site pre site post patronised . % % % % . % % % % respected . % % % % . % % % % offended . % % % % % % % % supported . % % % % . % % % % ignored . % % % % . % % % % listened to . % % % % . % % % % frustrated . % % % % . % % % % motivated . % % % % . % % % % doi: . /hsdr health services and delivery research vol. no. © queen’s printer and controller of hmso . this work was produced by jones et al. under the terms of a commissioning contract issued by the secretary of state for health and social care. this issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. applications for commercial reproduction should be addressed to: nihr journals library, national institute for health research, evaluation, trials and studies coordinating centre, alpha house, university of southampton science park, southampton so ns, uk. eme hs&dr hta pgfar phr part of the nihr journals library www.journalslibrary.nihr.ac.uk this report presents independent research funded by the national institute for health research (nihr). the views expressed are those of the author(s) and not necessarily those of the nhs, the nihr or the department of health and social care published by the nihr journals library 	health services and delivery research ; vol. ; no. 	list of tables 	list of figures 	list of boxes 	list of supplementary material 	list of abbreviations 	plain english summary 	scientific summary 	chapter background 	introduction and context 	stroke: the state of play 	stroke statistics: organisational issues and impact 	rehabilitation, recovery and persistent concerns 	improving patient experience: acute health care 	co-production 	experience-based co-design 	chapter methods: intervention development 	the intervention: full and accelerated experience-based co-design 	settings and sampling 	project governance and management 	steps of the process (full and accelerated experience-based co-design) 	stage : setting up the project 	stage : gathering staff experiences through observational fieldwork and in-depth interviews 	stage : gathering patient and carer experiences through observation and filmed narrative-based interviews 	stage : bringing staff, patients and carers together at separate and joint events 	stage : sustained co-design work in small groups formed around priorities 	stage : a celebration and review event 	break point 	‘accelerated’ experience-based co-design sites and 	chapter methods: the evaluation 	design and conceptual framework 	screening 	prior considerations 	procedure and participants 	sampling and recruitment 	recruitment 	data collection methods 	data analysis 	qualitative data analysis 	integration of data in the experience-based co-design evaluation and process evaluation 	quantitative data analysis 	process evaluation methods 	data sources for process evaluation 	ethics and consent 	project management and guidance 	approach to public and patient involvement 	chapter results: rapid evidence synthesis and co-design – priorities for change 	rapid evidence synthesis (objective ) 	co-design: priorities for change 	ideas that drove the changes 	chapter results: impact of changes 	impact of changes: qualitative findings – staff, patients and families 	space 	activities 	impact of changes: quantitative findings (behavioural mapping and patient-reported outcome measures/patient-reported experience measures) 	behavioural mapping 	within-site comparisons 	cross-site comparisons 	summary 	patient-reported experience measures and patient-reported outcome measures 	pre-implementation patient-reported experience measure data: summary of findings 	post-implementation patient-reported experience measure data: summary of findings 	patient-reported outcome measures 	commentary on patient-reported outcome measures 	implementation and engagement 	the ‘experience’ of taking part (staff, patients and families) 	process evaluation 	making sense of create and the experience-based co-design process (coherence and cognitive participation over time) 	making sense of the study and experience-based co-design in the wider stroke team (coherence and cognitive participation over time) 	raising awareness and engaging staff, patients and carers through researcher presence on units (coherence and cognitive participation) 	the influence of participation in experience-based co-design elements (coherence, cognitive participation and collective action) 	leadership, managerial authority and support (cognitive participation and collective action) 	experience-based co-design activity was welcomed but added to the workload of core group staff (cognitive participation, collective action and reflexive monitoring) 	did the reduced elements/accelerated approach impact on the implementation process (coherence, cognitive participation and collective action)? 	chapter conclusions 	comparison with other research 	interventions to promote increased activity on stroke units 	co-design approaches in acute health care 	strengths and limitations 	strengths 	limitations 	implications for health care 	the added value of using co-design to initiate change 	the ongoing challenge of (in)activity in stroke units 	costs and sustainability 	implications for research 	chapter dissemination 	acknowledgements 	references 	appendix sentinel stroke national audit programme key indicators and overview of sentinel stroke national audit programme organisational data 	appendix topic guide for patients and family members pre implementation 	appendix topic guide for interviews with members of staff pre implementation 	appendix topic guide for patients and family members post implementation 	appendix topic guide for members of staff post implementation 	appendix example ethnographic observations timetable 	appendix behavioural mapping protocol 	appendix rapid evidence synthesis 	appendix demographic information 	appendix patient-reported outcome measure data 	appendix patient-reported experience measure data 	appendix patient-reported experience measure data: feelings 	crossmark : 	page : << /ascii encodepages false /allowtransparency false /autopositionepsfiles true /autorotatepages /none /binding /left /calgrayprofile (gray gamma . ) /calrgbprofile (srgb iec - . ) /calcmykprofile (u.s. web coated \ swop\ v ) /srgbprofile (srgb iec - . ) /cannotembedfontpolicy /warning /compatibilitylevel . /compressobjects /tags /compresspages true /convertimagestoindexed true /passthroughjpegimages 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. .dd corpus id: table of contents. @article{cutter tableoc, title={table of contents.}, author={m. cutter}, journal={continuum}, year={ }, volume={ epilepsy}, pages={ - } } 	m. cutter 	published 	medicine 	continuum title of document: archfilm: cinema and the architectural promenade dominic michael aello master of architecture, thesis directed by: professor of the practice, peter noonan, aia architecture archfilm: cinema and the architectural promenade, engages and addresses the complex and interwoven relationship between the virtual world of cinema and the built environment. the thesis questions whether the architectural promenade, enhanced by the cinematic use of sequence and montage, can create an… expand view on pubmed apps.northeaststate.edu save to library create alert cite launch research feed share this paper topics from this paper 	cross reactions references showing - of references sort bymost influenced papers recency bureau of land management, division of land and resource 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performing arts intervention improves cognitive dysfunction in hospitalized older adults maria i.  danila, md, msc, msph, ,* joshua a.  melnick, mph, amy  mudano, mph, kellie  flood, md, katrina  booth, md, kimberly  kirklin, ma, and kenneth g.  saag, md, msc division of clinical immunology and rheumatology, department of medicine, university of alabama at birmingham. division of gerontology, geriatrics and palliative care, department of medicine, university of alabama at birmingham. alys stephens center, university of alabama at birmingham. *address correspondence to: maria i. danila, md, msc, msph, division of immunology and rheumatology, department of medicine, fot , th street south, university of alabama at birmingham, birmingham, al . e-mail: mdanila@uab.edu received: september , ; editorial decision date: may , decision editor: laura p. sands, phd abstract background and objectives: arts in medicine programs have emerged as a patient-centered approach that aims to improve health-related quality of life for patients in u.s. hospitals. storytelling and poetry/monologue recitation are forms of arts- based experiences designed to enhance healing and are delivered by an artist-in-residence. we evaluated the effect of a story- telling/poetry experience on delirium screening scores and patient satisfaction in hospitalized older adults. research design and methods: we conducted an observational pre–post study with a control group in the acute care for the elders (ace) unit at an academic medical center. a convenience sample of participants was recruited to participate and complete two questionnaires measuring pain, anxiety, general well-being, and distress at hospital admission and at hos- pital discharge. multivariable regression models were used to compare delirium screening score (primary outcome) between the control and intervention groups and to adjust for the differences in baseline characteristics between groups. results: at baseline participants in the intervention group were younger and had significantly lower cognitive impairment compared with those in the control group. participants exposed to the storytelling/poetry intervention had a lower delir- ium screening score at hospital discharge compared with those in the control group. the result remained significant after adjusting for age, baseline cognitive impairment, and general well-being. participants in the intervention group reported a high level of satisfaction with the interaction with the artist delivering the intervention. discussion and implications: an artist in residence-delivered storytelling/poetry experience was associated with a lower delirium score at discharge in this pilot study. further larger studies in diverse inpatient settings are needed to examine whether storytelling/poetry interventions or other types of arts in medicine programs can prevent or reduce delirium in hospitalized older adults. keywords: alternative and complementary medicine/care/therapy, quality of care, delirium translational significance: the results suggest that performing arts programs that include storytelling/poetry may be beneficial in the inpatient setting among certain geriatric populations. innovation in aging cite as: innovation in aging, , vol. , no. , – doi: . /geroni/igy advance access publication june , copyedited by: su mailto:mdanila@uab.edu?subject= background and objectives although advances have been made in the management of delirium (ely et al., ), pain (puntillo et al., ), anxi- ety, distress, and depression (wilkinson et al., ) in hos- pitalized older patients, addressing these clinical issues, in older adults remains a challenge (ahlers et al., ; misra, & ganzini, ; puntillo et al., ; rincon et al., ; rotondi et al., ; stolic & mitchell, ). arts in med- icine programs have emerged as an adjunct form of support for patients that promotes a healing environment, facilitates the physical, mental, and emotional recovery of patients, and aims to improve patients’ quality of life through the management of pain, stress, anxiety, and depression (lane & graham-pole, ; rollins, sonke, cohen, boles, & li, ). according to a joint commission survey, nearly half of the , respondent healthcare institutions reported having arts programming (rollins et  al., ). common types of bedside art programming include music, visual arts, drama, dance, literature, creative writing, and storytelling (lane & graham-pole, ; rollins et  al., ). for example, music therapy has been recognized as a simple and inexpensive adjunct to pharmacologic treat- ment regimens in managing postoperative pain and anxiety (allred, byers, & sole, ; bonny, ) and can inhibit stress by reducing anxiety and pain (almerud & petersson, ; chlan, engeland, anthony, & guttormson, ; nilsson, ; twiss, seaver, & mccaffrey, ) in inten- sive care units. arts-based interactions represent creative approaches to healing that can be categorized as either active (involv- ing patient participation) or receptive (patient listens and observes) sessions that provide creative experiences and positive distractions (warth et  al., ). storytelling is a form of arts experience designed to be delivered in both active and receptive sessions by artists in residence. poetry/ monologue recitations have also been included in perform- ing arts programs. the artist in residence can tailor the type of session according to the individual patient’s physical and mental state. despite anecdotal evidence of patients benefiting from storytelling/poetry sessions, few studies have examined whether exposure to this form of art pro- gramming influences patient outcomes. for example, in a study involving children with leukemia, a hypnotic trance through use of a child’s favorite story was found to be sig- nificantly more effective than a behavioral distraction and standard medical practice in alleviating distress, pain, and anxiety during bone marrow aspirations (kuttner, ). delirium is common in hospitalized older adults (ehlenbach et  al., ) and is associated with poor out- comes including prolonged hospitalization, decreased cognitive and physical functioning, increased placement in long-term health care facilities and increased mortality (campbell et  al., ). cognitive impairment is a major risk factor for delirium, and cognitively stimulating activi- ties have been found efficacious in preventing delirium in hospitalized older patients (inouye et al., ). in hospi- talized patients, storytelling and/or poem/monologue reci- tations could reduce stress levels, increase pain tolerance, improve mood, and hasten recovery times (rollins et  al., ). based on the need for an improved understanding of the effectiveness of performing arts programming in health care settings, the goals of our study was to evaluate the feasibility of a storytelling/poetry intervention among hos- pitalized older adults and to provide preliminary data on its effect on delirium and patient satisfaction in an inpatient setting. we hypothesized that exposure to our storytelling/ poetry intervention will be associated with fewer cases and fewer symptoms of delirium. research design and methods study design this pilot study was conducted in the acute care for elders (ace) unit at the university of alabama at birmingham (uab) between june and august and was approved by the local institutional review board. we used a pre–post design in which an intervention phase (storytelling inter- vention in addition to usual inpatient care) was followed by a control phase (usual inpatient care). the intervention phase was conducted between june and mid-july followed by the control phase between mid-july and august. during the study period, no other type of arts experience (e.g., music therapy, dance, textile therapy) was offered in the unit where the participants were hospitalized and recruited for this study. in addition, for the duration of the study, vis- its by hospital volunteers and pet therapy were not offered in the hospital unit where the study was performed. study participants potential study participants were patients admitted to the ace unit. patients aged  years or older were recruited to be part of the intervention or control group using the same process that had been previously established in the ace unit for utilization of storytelling by artists in residence as an adjunct modality for usual clinical care. specifically, the ace interdisciplinary clinical care team comprised of hospitalists, nurses, geriatrician/geriatrics nurse practition- ers, chaplain, a  social worker, a  clinical pharmacist, and therapists considered if the patients might benefit from interacting with artists in residence during their daily inter- disciplinary rounds. as per the predefined exclusion criteria, the interdisciplinary ace team excluded patients admit- ted to the ace unit who had severe agitation or delirium (i.e., anyone who required restraints, needed medications for their behaviors, or were so inattentive that they could not participate in the intervention or respond to question- naires), those who refused to participate, or whose families declined participation. each participant was given an infor- mation sheet describing the study and were asked to give innovation in aging, , vol. , no. copyedited by: su a verbal agreement before receiving the study surveys and intervention. the unit clinical nurse coordinator obtained informed consent for participation verbally. participation in the study was voluntary. storytelling/poetry intervention two artists in residence, who were part of uab hospital’s institute for arts in medicine (aim), delivered the bed- side storytelling/poetry intervention. the aim program, initiated in , is a partnership between uab medicine and the uab-affiliated performing arts center and aims to transform the health care environment and enhance heal- ing and wellness for patients, visitors, and staff through creative arts experiences. both artists in residence have more than   years of acting experience and have been trained to facilitate arts experiences in the health care environment. the artists visited the patients at the bedside for minutes once during the hospital stay. at the begin- ning of their interaction with the patient, the artists in residence introduced themselves and asked if the patient would like to hear a story or poem. if the patient responded positively, the artist in residence asked the patient prefer- ence regarding the type of story or poem (e.g., religious, humorous, folktale, legend, myths, fairy tale) they would like to hear. upon completion of the story/poem, the artist in residence asked the patient for feedback. the session was designed to be interactive, with the patient having the opportunity to reflect on the story or poem and share stories from his or her own life. an example of the inter- vention can be found at http://www.uab.edu/news/arts/ item/ -creative-approaches-to-healing-at-uab-s-insti- tute-for-arts-in-medicine-inspire-patients-and-clinicians. baseline data collection demographic characteristics (age, sex, race/ethnicity), comorbidities, and insurance coverage were collected from the electronic health record for all participating patients. a baseline paper-based questionnaire (figure  ) evaluated pain, anxiety, general well-being, and distress and was con- ducted on average –  days after the admission and before the participants in the intervention group were exposed to storytelling/poem recitation. pain (gallagher, bijur, latimer, & silver, ), anxiety (facco et  al., ), and general well-being (warth, keßler, hillecke, & bardenheuer, ) were assessed using visual analog scales (range – , lower values are better). the level of distress/anxiety was assessed using the one-item subjective units of disturbance scale (suds) scored from (no distress/totally relaxed) to (highest distress/fear/anxiety/discomfort ever; kim, hwallip, & yong, ; wolpe, ). nursing person- nel, who were unaware of the patient’s participation in the study, assessed patients’ level of cognitive impairment and whether delirium was present, and recorded these data in the patient’s ehr during the first day of hospitalization and the day of discharge. cognitive impairment was measured as part of the routine clinical using the six-item screener (sis; callahan, unverzagt, hui, perkins, & hendrie, ). the participants were asked to recall three random words and to state the year, the month, and the day. the number of errors is added together for a score ranging from (no cog- nitive impairment) to (severe cognitive deficit; callahan et  al., ). the presence of delirium was assessed by clinical nurses according to the usual clinical protocol at our institution once per hospital shift using the nurses delirium screening scale (nu-desc, range – ; score ≥ indicates delirium; gaudreau, gagnon, harel, tremblay, & roy, ), which includes five symptom domains (scored from to ): disorientation, inappropriate behavior, inap- propriate communication, illusions/hallucinations, and psychomotor retardation. each domain was scored either (no signs of item present), (mild to moderate, barely expressed), or (moderate to severe). the total score from the five domains was added together and a total score ≥ represents positive screening for the presence of delirium. the first assessment of delirium occurred at admission to the ace unit. psychometric properties of suds, sis, and nu-desc have been previously published (callahan et al., ; kim et  al., ; van velthuijsen et  al., ). of note, a validation study including hospitalized patients found that while nu-desc is a specific delirium detection tool, has lower sensitivity at the usually proposed cut-off point of ≥ (hargrave et al., ). outcomes and follow-up we collected study outcomes for both intervention and con- trol phase at the hospital discharge using paper-based ques- tionnaires (figure  ). the primary outcome of this study was delirium score as measured by the nu-desc scale (gaudreau figure  . recruitment and study procedures for the evaluation of a storytelling/poetry intervention in hospitalized older adults study. innovation in aging, , vol. , no. copyedited by: su http://www.uab.edu/news/arts/item/ -creative-approaches-to-healing-at-uab-s-institute-for-arts-in-medicine-inspire-patients-and-clinicians http://www.uab.edu/news/arts/item/ -creative-approaches-to-healing-at-uab-s-institute-for-arts-in-medicine-inspire-patients-and-clinicians http://www.uab.edu/news/arts/item/ -creative-approaches-to-healing-at-uab-s-institute-for-arts-in-medicine-inspire-patients-and-clinicians et al., ; neufeld et al., ). secondary outcomes were patient satisfaction with the physician, satisfaction with the nonclinical team and satisfaction with the artist in residence administering bedside story or poetry. patient satisfaction outcomes were assessed using a -point likert scale scored from (strongly disagree) to (strongly agree). similar to the baseline questionnaire, the follow-up questionnaires also included the same items evaluating the patient’s level of pain, anxiety, general well-being, and distress. statistical analysis we used descriptive statistics to compare participant char- acteristics between the intervention and control group. means and standard deviations (sds) were calculated for continuous variables, and frequencies and proportions were calculated for categorical variables. differences in sociode- mographic and clinical characteristics of between control and intervention group were examined using t-tests, chi- square tests, or fisher’s exact tests, as appropriate. in preliminary analyses, logistic regression models were used to compare the proportion of participants screening positive for delirium at discharge between the control and the intervention groups. the small sample size limited power to detect differences between the intervention and control groups in the proportion of participants that met nu-desc criteria ≥ . thus for this pilot study, we decided to evaluate at the nu-desc score as a continuous variable to see if we could identify an effect of the intervention that might war- rant further study after controlling for important confound- ers. multivariable regression models were used to compare delirium screening score (primary outcome) between the control and intervention groups to adjust for the differences in baseline characteristics between groups. we used gen- eralized linear models to evaluate the association between the exposure to the storytelling intervention and discharge nu-desc score or change in nu-desc score, respectively. in multivariable regression models, we included as covari- ates those baseline variables which were found at p <. to be associated with both the intervention and the primary outcome. we assessed for the presence of multicollinear- ity between cognitive impairment and nu-desc score at discharge. paired t-tests were used to compare the pre–post measures of patient satisfaction. a p <. was the criterion for statistical significance. no adjustments for multiple comparisons were performed. all analyses were conducted in sas (v . , enterprise guide v . , cary, nc). results a total of patients, mostly women ( %) with a mean (sd) age of . ( . ) participated in the study. compared with the control group, participants in the intervention group were slightly younger, ( . ) years versus . ( . ) and had less cognitive impairment: sis score of . ( . ) versus . ( . ). there was no significant difference between groups (intervention vs control group) in terms of sex, race, anxiety, pain, general well-being, distress, charlson comorbidity index, and nu-desc score at base- line (table  ). a  total of seven ( %) participants in the control group and four ( %) in the intervention group had a nu-desc score ≥ at hospital admission. at hospi- tal discharge, five ( %) participants in the control group and one ( %) participant in the intervention group had a nu-desc score ≥ and thus met criteria for delirium according to the nu-desc assessment (p  =  . ). on the day of discharge, the delirium screening score was signifi- cantly lower (less cognitive dysfunction) in the interven- tion group compared with the control group in univariable analysis (table  ). however, there were no differences in the length of stay and measurements of anxiety, pain, general wellbeing, and distress at hospital discharge between the intervention and control group (table  ). after adjustment for level of cognitive impairment, age, general wellbeing, and admission delirium score, exposure to the interven- tion remained independently associated with a significantly lower discharge delirium screening score (beta =  . [ . , . ], p = . ; table  , model a). since the duration of hos- pital stay was longer among those in the intervention group compared with the control group, we further adjusted for length of stay. however, the storytelling/poetry interven- tion remained independently associated with significantly lower delirium screening score at discharge (beta  =  . [ . , . ], p  =  . ; table  , model b). similarly, after adjustment for level of cognition, age, and well-being, there was a borderline significant association between exposure to the intervention and decrease in delirium score between hospital admission and discharge (beta =  . [− . , . ], p = . ). patients in the intervention group reported being satis- fied with the artist encounter . ( . ) (table  ). compared with the participants assigned to the control group, there was no significant difference in the patient satisfaction with their physician or nonphysician team (table  ). discussion and implications to our knowledge, this is the first study to evaluate the association between a bedside storytelling intervention delivered by artists in residence and changes in measures of cognitive dysfunction in hospitalized older adults. we found that exposure to a storytelling/poetry intervention was associated with improvement in nu-desc scores, after controlling for potential confounders including age, baseline cognitive impairment, level of distress, and general well-being. in addition, patient satisfaction with the bed- side storytelling/poetry intervention was high. many hospitalized patients, especially the older adults, are at risk of developing delirium, a risk that is increased by the presence of cognitive, functional, visual and hearing impairment, depression, and other comorbidities. delirium innovation in aging, , vol. , no. copyedited by: su is precipitated by hospitalization related factors (e.g., medi- cations, procedures, unfamiliar environment) and is associ- ated with increased morbidity and mortality, longer hospital stays and substantial additional health care costs (inouye, westendorp, saczynski, kimchi, & cleinman, ). there is a lack of strong evidence for pharmacologic therapies to prevent delirium, thus, nonpharmacologic modalities have the strongest evidence of benefit (inouye et al., ). such nonpharmacologic interventions have included music therapy, exercise, light, and sensory therapy as well as com- plementary alternative medicine modalities that have been evaluated with variable success (inouye et al., , ; levy, attias, ben-arye, bloch, & schiff, ). because stories can be used to discuss personal experi- ences and/or can provide a fantasy escape for the listeners (rollins et  al., ) arts programming using storytell- ing are increasingly encountered in the health care setting (hanna, rollins, & lewis, ). however, the evidence supporting the benefits of storytelling/poetry on improving clinical outcomes is sparse, a gap that our study aimed to fill. storytelling interventions exposing personal experiences with disease management have been shown to decrease blood pressure (houston et  al., ), and improve self- efficacy in adults with diabetes and hypertension (bertera, ; bokhour et  al., ), while recounting a favorite story has been employed to help children deal with pain (heiney, ; kuttner, ). storytelling interventions like the one we employed in the present study can provide hospitalized patients with cognitive stimulation and posi- tive distractions from the monotony and stress associated with the hospital stay. listening to a story provides an emo- tional experience which may uplift patients’ mood, relieve stress, promote wellness, and assist in the healing process (buchanan, ). however, while storytelling interventions may reduce anxiety and improve pain tolerance in some populations (hanna et  al., ; rollins et  al., ), we did not replicate these results in our study. this could be due to the different characteristics of the participants enrolled in our study and that acutely sick elders may respond differ- ently to storytelling compared with other groups, or to the small sample size employed by our pilot study. our study findings should be interpreted in the light of some limitations. because our study was a pilot study with small sample size, we were able to adjust only for some potential confounders and the precision of our estimates of the association between our intervention and improved delirium scores upon discharge is limited. participant recruitment in two phases, first in the intervention phase table  . baseline study participant characteristics by treatment group characteristic intervention (n =  ) control (n =  ) p value age, mean (sd), years ( . ) . ( . ) . female, n (%) ( ) ( ) . white race, n (%) ( ) ( ) . comorbidity index, mean (sd) ( . ) . ( . ) . insurance, n (%) . medicare (ffs) ( ) ( ) commercial ( ) ( ) medicare advantage ( ) ( ) anxiety,a mean (sd) . ( . ) . ( . ) . pain,b mean (sd) . ( . ) . ( . ) . general well-being,c mean (sd) . ( . ) . ( . ) . distress,d mean (sd) . ( . ) . ( . ) . cognitive impairment,e mean (sd) . ( . ) . ( . ) . nu-desc score,f mean (sd) . ( . ) . ( . ) . note: ffs = fee for service; nu-desc = nurses delirium screening scale; sd = standard deviation. arange – ; (very relaxed); (very tense). brange – ; (no pain); (worst possible pain). crange – ; (very good); (very bad). drange – ; (no distress/totally relaxed); (highest distress/fear/anxiety). ecognitive impairment measured using the six-item screener (range – ). fnu-desc nursing delirium screening scale (range – , score ≧ indicates delirium). table  . means and standard deviations of nu-desca score, and participant satisfaction with physician, nonphysician team and professional artist at hospital discharge outcomes intervention, n =  control, n =  t test, p value nu-desc score . ( . ) . ( . ) . satisfied with doctor interaction . ( . ) . ( . ) . satisfied with nonphysician team . ( . ) . ( . ) . satisfied with artist . ( . ) n/a n/a anurses delirium screening scale (nu-desc), range – ; score ≥ indicates delirium. innovation in aging, , vol. , no. copyedited by: su and then in the control phase, as we implemented in this study, rises the concern for temporal selection bias. however, this approach was chosen to prevent contamination bias, where the participants in the control group were inadvert- ently exposed to the storytelling/poetry intervention, which could minimize the difference in outcomes between the two groups. in addition, this was an observational study, and we did not employ “attention control” procedures in the con- trol group, and thus we were not able to adequately control for the nonspecific effects of the intervention such as the time spent with the patient. the follow-up period for the study was short, and the long-term effects of exposure to the storytelling intervention were not studied. in addition, the timing of the intervention in regard to the day of discharge may have influenced the effect of our intervention on the delirium screening score at hospital discharge. because we did not collect data on the timing of the daily nu-desc assessment in relation to the intervention, we could not eval- uate whether our storytelling/poetry intervention influenced the daily nu-desc scores. given the pilot nature of this study and that we did not record information on the par- ticipation rate, the generalizability of our findings is limited and larger studies are needed to confirm our results among hospitalized older individuals (thabane et al., ). in summary, in this pilot study, we evaluated the use and feasibility of an artist in residence-delivered storytelling/ poetry program in older adults admitted to an acute care for elderly unit. we found that the patients participating in the study had positive views about the interaction with the artist. although our artist in residence-delivered storytell- ing/poetry experience was associated with lower delirium screening score at hospital discharge, further larger studies in diverse care settings are needed to examine whether sto- rytelling interventions or other types of arts-based experi- ences in health care can prevent delirium in older adults. in addition, future research should focus evaluating whether it is the art experience itself or the patient–artist interacting about the art form that influences health outcomes. funding this work was supported by an institutional grant. dr. danila was supported by nih/niams k ar . acknowledgments we want to thank the artists  in  residence, elizabeth vander kamp and david roby and the acute care of elders nurse coordinator, terri d. middlebrooks for their involvement in this study. conflict of interest none reported. references ahlers, s. j., van gulik, l., van der veen, a. m., van dongen, h. p., bruins, p., belitser, s. v.,…knibbe, c. a. 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( ). the practice of behavior therapy ( st ed.). new york: pergamon press. innovation in aging, , vol. , no. copyedited by: su awake fmri reveals a specialized region in dog temporal cortex for face processing submitted may accepted june published august corresponding author gregory s. berns, gberns@emory.edu academic editor giorgio vallortigara additional information and declarations can be found on page doi . /peerj. copyright dilks et al. distributed under creative commons cc-by . open access awake fmri reveals a specialized region in dog temporal cortex for face processing daniel d. dilks , peter cook , samuel k. weiller , helen p. berns , mark spivak and gregory s. berns department of psychology, emory university, atlanta, ga, usa comprehensive pet therapy, atlanta, ga, usa abstract recent behavioral evidence suggests that dogs, like humans and monkeys, are capable of visual face recognition. but do dogs also exhibit specialized cortical face regions similar to humans and monkeys? using functional magnetic resonance imaging (fmri) in six dogs trained to remain motionless during scanning without restraint or sedation, we found a region in the canine temporal lobe that responded significantly more to movies of human faces than to movies of everyday objects. next, using a new stimulus set to investigate face selectivity in this predefined candidate dog face area, we found that this region responded similarly to images of human faces and dog faces, yet significantly more to both human and dog faces than to images of objects. such face selectivity was not found in dog primary visual cortex. taken together, these findings: ( ) provide the first evidence for a face-selective region in the temporal cortex of dogs, which cannot be explained by simple low-level visual feature extraction; ( ) reveal that neural machinery dedicated to face processing is not unique to primates; and ( ) may help explain dogs’ exquisite sensitivity to human social cues. subjects animal behavior, neuroscience keywords fmri, dog, face area introduction for social animals, faces are immensely important stimuli, carrying a wealth of information, such as identity, sex, age, emotions, and communicative intentions of other individuals (bruce & young, ; tate et al., ; leopold & rhodes, ). given the importance of face recognition for social animals, it is perhaps not surprising that humans and monkeys have dedicated neural machinery for processing visual face information discrete from the neural machinery responsible for processing nonface visual information, such as for scenes, bodies, and objects (gross, rocha-miranda & bender, ; desimone et al., ; perrett et al., ; tsao, moeller & freiwald, ; kanwisher & dilks, ). but what about other social animals, especially non-primates, like dogs? dogs are a special case because they are both highly social with each other and have an additional evolutionary history with humans through domestication. as such, dogs may have evolved mechanisms especially tuned to social cues and therefore may have specialized how to cite this article dilks et al. ( ), awake fmri reveals a specialized region in dog temporal cortex for face processing. peerj :e ; doi . /peerj. mailto:gberns@emory.edu https://peerj.com/academic-boards/editors/ https://peerj.com/academic-boards/editors/ http://dx.doi.org/ . /peerj. http://dx.doi.org/ . /peerj. http://creativecommons.org/licenses/by/ . / http://creativecommons.org/licenses/by/ . / https://peerj.com http://dx.doi.org/ . /peerj. neural machinery for face processing (hare & tomasello, ; kaminski, schulz & tomasello, ; miklosi & topal, ). behavioral evidence suggests that dogs may indeed process facial information (racca et al., ; somppi et al., ), but the neural mechanisms underlying the dogs’ behavior could be very different than humans or monkeys. for example, face recognition in dogs might rely on purely associative mechanisms, associating a face with a meaningful outcome (e.g., food). if so, then one would not expect face-specific processing in visual cortical areas, but rather activation in reward areas. alternatively, dogs may have evolved specialized neural machinery for face recognition, and thus one would expect face-selective regions in visual cortex. to test these competing hypotheses about face-specific processing, using fmri, we scanned six awake, unrestrained dogs (berns, brooks & spivak, ). to obtain high-quality fmri data, each dog (i) completed – months of behavioral training to teach them to hold still during scanning, and (ii) had a custom-made chinrest to help minimize head movement. during scanning, dogs were presented with movie clips of human faces, objects, scenes, and scrambled objects (dynamic stimuli) and static images of human faces, dog faces, objects, scenes, and scrambled faces (static stimuli) on a projection screen placed in the rear of the magnet (fig. and video s ). materials and methods participants participants were dogs (n = ; neutered males, spayed females) from the atlanta com- munity. all were pets and/or released service dogs whose owners volunteer their time for fmri training and experiments. for participation in previous experiments (berns, brooks & spivak, ; berns, brooks & spivak, ; cook, spivak & berns, ), these dogs took part in a training program using behavior shaping, desensitization, habituation, and behavior chaining to prepare them to be comfortable with the physical confines of the mri bore and the loud noise produced by scanning. accordingly, all dogs had demonstrated an ability to remain still during training and scanning for periods of s or greater. this study was performed in strict accordance with the recommendations in the guide for the care and use of laboratory animals of the national institutes of health. the study was approved by the emory university iacuc (protocol #dar- - ba), and all dogs’ owners gave written consent for participation in the study. training all dogs had previously undergone training which involved the presentation of images on a computer screen (cook, spivak & berns, ). thus, prior to participation in the current experiment, the dogs were accustomed to viewing images on a screen in the mri. prior to actual scanning, all dogs underwent practice sessions with a complete run through of all stimuli (described below), which were presented in a mock scanner on a computer screen. dogs were approved for scanning by demonstrating that they could remain motionless for the duration of at least two, s-blocks of black and white images of human faces, dog faces, dilks et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. /supp- http://dx.doi.org/ . /peerj. /supp- http://dx.doi.org/ . /peerj. figure experimental setup in mri. dogs were trained to station within an individually customized chin rest placed inside a stock human neck coil. the upper surface coil was located just superior to the dog’s head. images were rear projected onto a translucent screen placed at the end of the magnet bore. in the dynamic stimuli runs, color movie clips ( -s each) were shown in s blocks of human faces, objects (toys), scenes, and scrambled objects. in the static stimuli runs, black and white images ( ms on, ms off ) were shown in s blocks of human faces, dog faces, everyday objects, scenes, and scrambled faces. the dynamic stimuli runs were used to localize a candidate face region in the temporal cortex of dogs, and then the static stimuli runs were used to independently test the face selectivity of this region. dilks et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. objects, scenes, and scrambled faces, with no actual human in view. between image blocks, dogs were either praised or rewarded with a food treat for holding still. experimental design in the current experiment, a blocked fmri design was used in which the dogs viewed either movie clips (dynamic stimuli) or static images (static stimuli). each dog completed dynamic stimuli runs and – static stimuli runs, depending on their tolerance of the mri. in the dynamic runs, dogs were presented with -s color movie clips of human faces, objects (toys), scenes, and scrambled objects (pitcher et al., ) (fig. and video s ). the scrambled object movies were constructed by dividing each object movie clip into a by box grid and spatially rearranging the location of each of the resulting movie frames. there were movie clips for each category. each run contained two sets of four consecutive stimulus blocks in palindromic order (e.g., faces, objects, scenes, scrambled objects, scrambled objects, scenes, objects, faces), to make two blocks per stimulus category per run. in the static runs, dogs were presented with black and white images of human faces, dog faces, objects, scenes, and scrambled faces. the scrambled face images were constructed using the steerable pyramid method (simoncelli & freeman, ). each image was presented for ms followed by a ms black screen interstimulus interval. there were images for each category. each run contained two sets of five consecutive stimulus blocks in palindromic order (e.g., human faces, dog faces, objects, scenes, scrambled faces, scrambled faces, scenes, objects, dog faces, human faces), to make two blocks per stimulus category per run. mri scanning all scanning was conducted with a siemens t trio whole-body scanner. head movement was reduced by a custom chinrest for each dog that allowed the dog to achieve consistent stationing in the mri coil (a standard neck coil) (berns, brooks & spivak, ). all participants wore ear plugs during scanning. each scan session began with a s, single image localizer in the sagittal plane (spgr sequence, slice thickness = mm, tr = . ms, te = . ms, flip angle = degrees, × matrix, fov = mm). a t -weighted structural image was previously acquired during one of our earlier experiments using a turbo spin-echo sequence ( – slices, tr = , ms, te = . ms, voxel size = . × . × mm, flip angle = degrees, echo trains), which lasted ∼ s. functional scans used a single-shot echo-planar imaging (epi) sequence ( slices, tr = , ms, te = ms, voxel size, × × mm, flip angle = degrees, % gap). slices were oriented dorsally to the dog’s brain (coronal to the magnet, as, in the sphinx position, the dogs’ heads were positioned degrees from the usual human orientation) (fig. ) with the phase-encoding direction right-to-left. sequential slices were used to minimize between-plane offsets from participant movement, and the % slice gap minimized the crosstalk that can occur with sequential scan sequences. we have previously found that both structural and functional resolutions were adequate for localizing activations to structures like the caudate nucleus (berns, brooks & spivak, ; berns, brooks & spivak, ; cook, spivak & berns, ). dilks et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. /supp- http://dx.doi.org/ . /peerj. /supp- http://dx.doi.org/ . /peerj. stimuli were presented using python . . and the expyriment library. each stimulus block was manually triggered by an observer at the rear of the magnet. this manual trig- gering ensured that the dog was properly stationed at the beginning of each block. impor- tantly, no actual human was in view during any of the stimulus presentation blocks. the center of each stimulus was presented binocularly, and at eye level in front of the dog, such that each stimulus fell in the center of the visual field when the dog was looking forward. heart rate and respiration rate were not collected during scanning. however, we do not believe that either of these physiological measures contributed to our findings for two reasons. first, although dogs’ heart rate (hr) and respiration rate (rr) are greater than humans’, they are not that much faster. in fact, large dogs (which most of our subjects are) have hrs and rrs similar to humans. additionally, the tr in this study was , ms, which is about % faster than the tr in a typical human study ( , ms). thus, any modestly faster hr and rr is compensated for by the faster tr. second, both hr and rr would produce a general effect across brain regions, and we see differential effects between dfa and v (see functional data preprocessing and analysis section and results section). functional data preprocessing and analysis preprocessing was conducted using afni (nih) and its associated functions, and steps were identical to those described previously (berns, brooks & spivak, ; berns, brooks & spivak, ). in brief, -pass, -parameter affine motion correction was used with a hand-selected reference volume for each dog. we hand selected a reference volume because the first volumes are never the most representative of the dog’s head position during the study. the reference volume was typically midway in the first run, after the dog had settled into a comfortable position. next, because dogs moved between blocks (and when rewarded), aggressive censoring was carried out. a volume was flagged for censoring based on two criteria: ( ) excessive scan-to-scan motion; and ( ) identification as an outlier based on overall signal intensity. censored files were inspected visually to be certain that bad volumes (e.g., when the dog’s head was out of the scanner) were not included. the majority of censored volumes followed the consumption of food. if less than % of the volumes were retained, we excluded that subject (berns, brooks & spivak, ). this resulted in the exclusion of two dogs. for the remaining six dogs, – % of volumes were retained. epi images were then smoothed and normalized to %-signal change. smoothing was applied using dmerge, with a mm kernel at full-width half-maximum (fwhm). the resulting images were then input into the general linear model. for each subject, a general linear model was estimated for each voxel using ddeconvolve. for the dynamic stimuli runs, the task-related regressors in this model were: ( ) human faces, ( ) objects, ( ) scenes, ( ) scrambled objects, and ) fixation immediately prior and after each stimulus block. for the static stimuli runs, the task-related regressors in this model were: ( ) human faces, ( ) dog faces, ( ) objects, ( ) scenes, ( ) scrambled faces, and ) fixation immediately prior and after each stimulus block. because our previous work measuring the hemodynamic response function (hrf ) in dogs on this task revealed a peak response at – s after signal onset (berns, brooks & spivak, ), the six task regressors were dilks et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. modeled as variable duration events and were convolved with a single gamma function approximating the hrf. motion regressors generated by the motion correction were also included in the model to further control for motion effects. a constant and linear drift term was included for each run. to identify a candidate dog face area (dfa) for each dog, we used the dynamic stimuli runs (contrast: faces > objects). next, we identified the voxel with maximal intensity in the temporal lobe ventral and caudal to the splenium (datta et al., ). we then placed a spherical roi of mm radius around the this voxel for subsequent testing of the static stimuli. for v , we identified the area of maximal activation in the dorsal occipital region when comparing the mean signal of all categories in the dynamic condition to baseline and placed an roi of mm radius around this voxel. roi locations were placed by one author and confirmed by two others. the mean signal was then extracted from these rois for each dog in each of the conditions of static stimuli. we used a mixed-effect model (spss , ibm) to determine whether there was a significant effect of stimulus category in both the putative dfa and v (maximum-likelihood estimation, scaled identity covariance structure for repeated effects and subject for random effect). the average timeseries during stimulus blocks for faces and objects was extracted from the dfa for each dog. each timeseries was detrended, and values from censored volumes replaced with nans. the activity within the roi immediately preceding the onset of the stimulus block was subtracted from subsequent values during the stimulus presentation. this compensated for any residual activity during the interstimulus intervals. the resultant timeseries were averaged over all repetitions and dogs. results the dfa was detected in the right hemisphere in all six dogs, but differed slightly in the medial-lateral direction: four dogs exhibited a dfa more medially, while the other two dogs exhibited a dfa more laterally. next, a region-of-interest (roi) of mm radius was centered over the peak voxel within the predetermined dfa for each dog (fig. ), and the activity of this roi was compared across the stimulus categories in the static stimuli runs. crucially, data from the static stimuli runs served as the test data and were independent from the data used to define the dfa. first, we found no significant difference in activation between human and dog faces in the dfa (t( ) = . , p = . ), and thus collapsed across these two categories. second, to investigate face selectivity, we then compared the response to images of faces to images of objects, scenes, and scrambled faces in dfa, and found a significant category effect (f( , ) = . , p = . ), with a significantly greater response to images of faces compared to objects (punc = . ; pbonf = . ), a marginally greater response than scenes (punc = . ; pbonf = . ), but no significant difference in response to scrambled faces (punc = . ; pbonf = . ) (fig. a). extraction of average timecourses from dfa to both faces and objects showed that objects decayed quickly while the response to faces was sustained, resulting in an overall greater response (fig. ). these findings not only reveal within-subject replicability across paradigms, but also the face selectivity of the dfa, namely its significantly greater response to faces compared to objects. dilks et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. figure roi locations for the dog face area (dfa) and primary visual cortex (v ). the dfa was identified by the contrast of faces versus objects during the dynamic stimuli runs. each color represents the roi of one dog. for visualization and comparison of location, the rois have been spatially nor- malized and overlaid on a high resolution dog brain atlas (datta et al., ). the location of the dfa was localized to the medial bank of the ventrocaudal temporal lobe in of the dogs, with the other localized more laterally. v was identified by the average of all dynamic run conditions (face, objects, scenes, scrambled) relative to baseline. in each dog, a dorsal area of activation in the caudal portions of the marginal/endomarginal gyri was identified and corresponded to the known location of primary visual cortex. given the similarity in low-level features between faces and scrambled faces, it is not surprising that the dfa might respond to scrambled faces, albeit less reliably than to the images of faces themselves. but might the face selectivity in the dfa be explained entirely by retinotopic information simply inherited from early visual cortex? to address this possibility, we defined the primary visual cortex (v ) (contrast: average of all stimulus categories versus baseline) using the dynamic stimuli runs for each dog. for all subjects, we found a region dorsally in the caudal portion of the marginal and endomarginal gyri, con- sistent with the known location of dog v (beitz & fletcher, ). next, an roi of mm radius was centered over the peak voxel within the predetermined v for each dog, and the activity of this roi was compared across the stimulus categories in the static stimuli runs. the face selectivity of this v roi was then compared to the face selectivity of the dfa. a (roi: dfa, v ) × (condition: faces, objects) mixed-effect model revealed a significant interaction (f( , ) = . , p = . ), indicating that the face selectivity of the dfa was not like that of v , and thus not strictly a result of low-level feature extraction (fig. b). dilks et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. figure average percent signal change in dfa and v . error bars indicate the standard error of the mean (n = ). (a) in dfa, we found a significant category effect (f( , ) = . , p = . ), with a significantly greater response to images of faces compared to objects (∗∗ p = . ) and a marginally greater response to scenes (∗p = . ). (b) v had a similar level of response to all stimulus categories (f( , ) = . , p = . ), and crucially was significantly different from dfa in face selectivity (i.e., faces compared to objects) (f( , ) = . , p = . ). figure average time course of activation in dfa for faces and objects. the stimulus was visible for s. each time course was referenced to the volume immediately preceding the onset of the stimulus and was averaged over all dogs and all trials (excluding censored volumes). the response to objects decayed quickly while the response to faces was sustained, resulting in an overall greater response, which was individually significant at the indicated time points (∗ t > . ). dilks et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. but might stimulus-correlated motion (e.g., the dogs moved more on images of faces than objects) explain our results? stimulus-correlated motion would produce a general effect across brain regions, and we, in fact, see a differential effect between dfa and v , thus we do not believe that stimulus-correlated motion provides an alternative account. however, to confirm that stimulus-correlated motion did not bias our results, we calculated the mean scan-to-scan motion as the euclidean sum of differential translations in the three principal directions. the overall mean scan-to-scan motion was . mm (s.e. = . ), but this measure was not significantly different across the stimulus categories (f( , ) = . , p = . ). thus, dogs did not move more during one category versus another, and as such stimulus-correlated motion cannot explain our results. (the same result was obtained for the censored trials (mean = . mm, s.e. = . ) (f( , ) = . , p = . )). discussion taken together, the above results provide the first evidence for a region in temporal cortex of dogs involved in the processing of faces. indeed, while there is ample behavioral evidence that dogs respond to faces, our results demonstrate an evolutionary continuity in the neural substrates of a key aspect of social behavior: a face-selective region in dog cortex located in an area similar to that of humans and monkeys. the commonality of location is consistent with the commonality and importance of face processing in social species and is found in visual cortex, suggesting that dogs’ ability to process faces is not simply the result of learned associations. our finding that dogs, like humans and monkeys, exhibit specialized cortical face regions is also consistent with two other studies demonstrating that neural machinery dedicated to face processing may not be unique to primates, having been observed in sheep (kendrick & baldwin, ) and crows (marzluff et al., ). in addition to behavioral evidence suggesting dedicated neural machinery for face processing in dogs, one previous study suggested a neural signature for such processing (tornqvist et al., ). using visual event-related potentials (erps), this study reported differences in two erp components between the responses to human and dog faces. this study gave the first hint of a neural substrate for face processing but also raised several questions, namely the degree to which visual recognition of any object (given only face stimuli were tested) or low-level feature extraction (given the low-level visual differences between the images of human and dog faces) might explain the results. moreover, the limited spatial resolution of eeg precluded the precise localization of putative face-selective machinery, which is relatively small and restricted to specific regions of occipital and temporal cortex in primates. our fmri results build on these erp findings and offer strong evidence for a face-selective region in dog temporal cortex, responding significantly more to images of faces than to images of objects. furthermore, the face selectivity of the dfa was not found in dog primary visual cortex, ruling out simple low-level feature extraction as explanations for the face-selective response in dfa. the principal limitation of our study stems from the small effect size. the average differential bold response was well less than %, which is consistent with human fmri dilks et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. studies. comparable animal fmri studies, however, overcome the signal limitation by immobilizing the subject and scanning for much longer periods of time to decrease the effects of noise, but this approach often uses a small number of subjects – typically two. in contrast, our approach is to use awake, trained dogs who cooperatively enter the scanner and hold still for periods up to several minutes without restraint. and while the dogs do extraordinarily well, the data quality cannot approach that obtained from a sedated, immobilized monkey. thus, the trade-off is noisier data. we compensate by using more subjects than a typical monkey study, here reporting the data from six dogs. although we have studied larger cohorts of dogs in previous studies, watching images on a flat screen is not a natural behavior for dogs, and only a subset of the mri-trained dogs would do so, even after months of training. even so, the data we report here show a high degree of within-subject replicability, with some inter-subject variation in the location of dfa, some of which may be due to noise and some due to the existence of multiple face-sensitive patches. another potential limitation of our study may be the concern about vasculature effects. in fmri, signal changes in a given region of cortex are attributed to neuronal activity. however, it could be the case that such fmri signal changes might arise from a draining vein, making it difficult to say whether the fmri signal changes are due to neuronal activity in that region of cortex, in more distant cortical regions, or both. physiological noise may hypothetically affect the detected activations; however, we have no a priori reason to suspect that the reported dfa or v activities are due to physiological confounds. the lack of condition-specific effects in v rules out a global confound, so the remaining question is whether the putative dfa activity is a result of physiologic noise on a local level. in a previous dog-fmri study (cook, spivak & berns, ), we investigated the inclusion of a ventricle roi as a covariate and proxy for physiological noise and found that it was not a significant contributor to activations in the reward system. in that experiment, the stimuli represented conditioned signals to food reward, and would be expected to be far more arousing than the visual stimuli used here. thus, the ultimate goal is to obtain converging evidence across multiple methodologies (fmri, neurophysiology, lesion studies, etc.) and across multiple labs to definitively establish the selectivity of a given cortical region. finally, it is important to realize that a “baseline” does not exist in this study—at least in the same way as in human and monkey studies. because the dogs were unsedated and unrestrained, they were periodically reinforced with treats and praise for holding still, and because this occurred between stimulus blocks, one should not interpret the baseline as “nothing”. in fact, the dogs were always on task, whether a stimulus was visible or not. although we report bold activations relative to an implicit baseline (figs. and ), the statistics and inferences are based on the differential activity between stimulus conditions (e.g., faces and objects). in summary, the existence of a face-selective region in temporal dog cortex opens up a whole range of new questions to be answered about their social intelligence: what is the relative impact of early socialization on dog versus human face processing? do face regions in dogs process emotional content? given canids’ reliance on body posture for dilks et al. ( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /peerj. communication, are there corresponding body-selective regions? we do not know whether face-selective cortex in dogs is a result of the domestication process and dogs’ resultant reliance on humans, or whether such face regions predate domestication and exist widely in other social carnivores. but the relatively small size of the dog brain, and the dedication of face processing to specific regions, highlights the importance of face processing to this species, and may explain dogs’ exemplary skill at interspecies communication. acknowledgements we are grateful to the dogs’ owners for the time they have devoted to training: cindy keen (jack), patricia king (kady), nicole zitron (stella), darlene coyne (zen), marianne feraro (eddie), and cory and anna inman (tallulah). additional information and declarations funding this work was funded by a grant from the office of naval research (n - - - ). the funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. grant disclosures the following grant information was disclosed by the authors: office of naval research: n - - - . competing interests mark spivak is president of comprehensive pet therapy. gregory berns and mark spivak own equity in dog star technologies and developed technology used in the research described in this paper. the terms of this arrangement have been reviewed and approved by emory university in accordance with its conflict of interest policies. author contributions • daniel d. dilks conceived and designed the experiments, analyzed the data, wrote the paper, prepared figures and/or tables, reviewed drafts of the paper. • peter cook conceived and designed the experiments, performed the experiments, analyzed the data, contributed reagents/materials/analysis tools, prepared figures and/or tables, reviewed drafts of the paper. • samuel k. weiller and mark spivak conceived and designed the experiments, performed the experiments, reviewed drafts of the paper. • helen p. berns conceived and designed the experiments, contributed reagents/materials/analysis tools, reviewed drafts of the paper. • gregory s. berns conceived and designed the experiments, performed the experiments, analyzed the data, wrote the paper, prepared figures and/or tables, reviewed drafts of the paper. dilks et al. 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( ), peerj, doi . /peerj. / https://peerj.com http://dx.doi.org/ . /pnas. http://dx.doi.org/ . /j.tics. . . http://dx.doi.org/ . / - ( ) - http://dx.doi.org/ . /j.neuroimage. . . http://dx.doi.org/ . /s - - - http://dx.doi.org/ . /s - - - http://dx.doi.org/ . /rstb. . http://dx.doi.org/ . /s - - - http://dx.doi.org/ . /pnas. http://dx.doi.org/ . /peerj. 	awake fmri reveals a specialized region in dog temporal cortex for face processing 	introduction 	materials and methods 	participants 	training 	experimental design 	mri scanning 	functional data preprocessing and analysis 	results 	discussion 	acknowledgements 	references ann ist super sanità | vol. , no. : - doi: . /ann_ _ _ a n im a l -a s s is t e d in t e r v e n t io n s in m e n t a l h e a l t h summary. the italian ministry of health, in , instructed the national committee for bioethics to carefully review and ultimately provide evidence for future legislative bills in various aspects. one such matter was that of the subject of “pet therapy”, generically viewed as a “man-animal” relation- ship, with the purpose of proving beneficiary to both human health and welfare. the necessity of a bioethical approach was deemed important in establishing the concrete benefits for mankind (and the research required to demonstrate this) whilst also considering any possible malaise inflicted on those animals participating. the final recommendations decided upon, took into consideration effectiveness, cost, suitable alternatives, discussion of the intervention with the patient. key words: bioethics, health, humans, animals. riassunto (problemi connessi con l’uso degli animali a scopo terapeutico. il documento del comitato nazionale per la bioetica). nel il comitato nazionale per la bioetica fu incaricato dal ministro della salute di approfondire vari temi per fare valutazioni utili a una futura produzione legislativa. uno dei temi era relativo alla pet therapy, intesa genericamente come relazione tra uomo e animale col fine di produrre un beneficio per la salute e il benessere umani. la rilevanza bioetica fu indicata soprattutto nella individuazione dei reali benefici per l’uomo e nella ricerca per dimostrare questi e i possibili malesseri degli animali coinvolti. la dimostrazione dell’efficacia, i costi, le alternative, la condivisione delle scelte con il paziente e gli interessi attribuibili all’animale furono presi in conside- razione contemporaneamente nelle raccomandazioni finali. parole chiave: bioetica, salute, uomo, animali. problems related to the use of animals for therapeutic and care purposes. the document of the national committee for bioethics pasqualino santori president, bioethics veterinary committee, rome, italy introduction the national committee for bioethics, appointed in and remaining in office until , was com- missioned by the italian ministry of health to con- template the area of “pet therapy” from a bioethical point of view. the subject of “pet therapy” i.e. the use of animals in providing a beneficial effect on the health and welfare of humans has aroused great pub- lic interest. nevertheless, solid scientific data on the real efficacy of this therapy are seriously lacking and still under acquisition. a major difficulty envisaged in transferring this therapy to the medical classes is due to the present lack of scientific data on a) the benefi- ciary effect on the human being and b) the welfare of the animal employed. a strong conviction felt by most, is that whilst facilitating the human being, the outcome for the animal must also be advantageous. a working party on animals was appointed in and had, as its first assignment, that of studying the area of “pet therapy”. experts in this specific field of activity were em- ployed to carry out a series of interviews, the result of which saw various rough drafts of the final docu- ment being drawn up. these were dealt with in sev- eral assembly discussions before final approval of the document was given. this decision was reached, unanimously, on october st in an assembly comprised of doctors, lawyers and a veterinary sur- geon. the work proceeding realization of the document saw the coordinator of the group on animals invit- ed to a hearing on the bill, by the commission of social affairs, of the chamber of deputies. the title of the document, “bioethical problems related to the use of animals in activities correlated to human health and welfare. man-animal thera- peutic alliance” serves to highlight the fact that the cnb did not wish to deal exclusively with “pet ther- apy”. two other aspects, closely correlated, were the case of assistance animals and that of those patients who are hospitalized and desire to have their pets acompany them during their stay. the term “pet therapy” is unquestionably recog- nizable and undoubtedly the reason for selection of this title. despite this, the critics may be moved to selection of an arguably more apt title, employ- address for correspondence: pasqualino santori, bioethics veterinary committee, via s. carlo a palidoro , passoscuro, rome, italy. e-mail: p.santori@tiscali.it. pasqualino santori a n im a l -a s s is t e d in t e r v e n t io n s in m e n t a l h e a l t h ing the use of more precise and careful terms. some of these include: assisted therapies with/through animals (aat), assisted activities with/through ani- mals (aaa) and so on, including the use of animals for educational/social purposes. assistance animals were also taken into considera- tion, as in the case of guide-dogs for the blind, for the deaf, for the motor disabled, for those affected by epi- lepsy etc. the aforementioned case of those patients who are hospitalized and desire to have their pets ac- company them during their stay was also discussed. on reflection of all of these cases, there are two considerations. the first is in the search for the ben- efit of using animals in ameliorating human health, the second, the use of animals as elements of this relationship. the moral implications for both parties involved are analogous. the human beings involved are ulti- mately weak; they are in need of assistance/therapy. the animals themselves are also deserving of moral consideration. these moral implications are par- ticularly important, considering the non-traditional and in part unknown nature of these interventions, which involved physical and psychological aspects. it has been felt by professional organizations and public institutions alike, the necessity for adequate definition of guidelines and utilization of a code of ethics. in response to this, the cnb has felt the need to provide answers not only to these requests but also to the requests of the ministry. object and limits in the execution of “pet therapy” and thus correlat- ed activities, the primary preoccupation is undoubt- edly in ensuring an advantageous outcome for the human beings involved. the importance of ensuring the protection (and where necessary, the improve- ment) of the welfare of those animals involved must not be however be underestimated or overlooked. in order to definitively reach any conclusions and thus recommendations, it is important to consider all aspects of moral importance. the decision was thus made to analytically consider the various points of view that could potentially emerge in this type of de- bate. as a result, four parties of interest have been rec- ognized: the patient, the animal, the working party and the community. finally, the legal aspects sur- rounding the matter under investigation have been analyzed. without doubt, the most innovative as- pect of this approach has been deliberation on the hypothetical “point of view” of the animal. in this regard, certainly, a full and comprehensive interpretation of the requests/needs of the animal cannot be achieved. nevertheless, with the intention of recognizing a real moral status for animals, the artifice has been used of interpreting their presum- able interests through the filter and elaboration of the bioethical committee. the requisite for consider- ing the point of view of the animal comes not only from ethical consideration but also from legal and practical aspects. the “animal question”, in other words, the caring for protection of animals, has transformed from be- ing a somewhat small phenomenon of the elite to be- ing a popular social-cultural need, at least in western civilization. this ethical “need” however, has led to repercussions in the legal systems of those countries in the european union that provide for the protection of animal welfare. furthermore, we can hypothesize that the efficacy of the therapeutic process comes in part, from the belief of those involved in the process that the animal involved is in fact actively participat- ing and profiting itself from the interaction. so much so that it is possible to identify some sort of inter-spe- cific “therapeutic alliance”. the ethical consideration, or rather the bioethical consideration (so called as the reflections require biological as well as ethological considerations) is particularly required as practices such as those of “pet therapy” are novel with respect to the historical and traditional uses of animals in human activities/ practices. the interest of the community and of the patient the primary interest of the human community fully concurs with that of the patient – the search for legitimate benefits for their own fellow beings, those with a pre-requisite for care and assistance. the augmentation of any innovative practices still unknown to the medical world/social systems fun- damentally rely on the production of scientific data that demonstrates irrefutable efficacy of the inter- vention. a widespread community interest, which has now also been established by law, is that of safe- guarding the welfare of the animal. the institutions involved have to face the difficult task of considering a plurality of concomitant el- ements: the health and welfare of the animals, the health of the public, the management and distri- bution of resources, the investment in the develop- ment of knowledge, the provisions of information for citizens and informed consent in these practices. despite all the difficulties envisaged in this genre of practice, one element that could provide some or- der in this situation would be to put into effect a protocol of research that enables examination and comparison of all the elements, concentrating on the single clinical or social case. one particular problem envisaged is that of expend- iture. given the current economic climate whereby great attention is directed towards public expenditure, it is imperative that a “pet therapy” working party en- compasses a multidisciplinary group. that is, a group that is competent in satisfying all the imminent needs of both parties, in providing assistance to the patient whilst also ensuring the management and protection of the animal. a protocol of “pet therapy” incorporating profes- ethical issues in animal use a n im a l -a s s is t e d in t e r v e n t io n s in m e n t a l h e a l t hsional staff could essentially involve high cost. at the same time, it would ensure greater accuracy in the collection of results and production of scientific data. on the contrary, incorporation of those indi- viduals working on a voluntary service, although may extend the base of intervention with no par- ticular costs, may produce less objective data. the interest of the animal the practices of “pet therapy” in most cases would probably be better pursued through activities closer to those for which the animal has been originally domesticated. the attempt to express the interest of the ani- mal, without anthropomorphic attributions or rei- fications, whilst filtered by a bioethical committee, may be contradicted. it does however, underlie the search in practice for the acknowledgement of the moral importance of the life of the animal. the sheer fact that the animal is in some way involved in a “pet therapy” practice requires that a permanent condition of welfare (if not an improved condition of welfare) is guaranteed. the responsibilities toward the animals must not be implemented during practice alone; it must be realized even during phases of inactivity, at termi- nation of the protocol and for the remainder of its life thereafter. the animal species that have not undergone the laborious and millenary biologic process of domes- tication and are therefore “wild”, should, as a pre- caution, be excluded from these practices of “pet therapy”. despite individual processes of tameness, they could suffer the close contact with humans. another interest of the animal is that of being subjected to training practices that are character- ized by gentle methods. these methods should not be physically or psychologically forceful, thus re- specting the dignity and welfare of the animal. the interest of the working party in the animal-assisted therapies, less so in the case of assistance animals, the working party must be necessarily large enough in order to include all the professionals required for all phases of the project and its realization. it could prove difficult to achieve and maintain a dynamic equilibrium between the various components especially in the case of activi- ties involving professionals rather than volunteers. the same relationships, within such a large group of people could therefore affect the relationship be- tween the human patient and the animal co-thera- pist. to quote only one code of conduct of only two of the involved professionals: “the vet must interrupt a session even if very productive for the patient, if the animal shows any signs of malaise. the doctor pursues the improvement of the clinical situation of the patient by documenting facts”. even in this case, the acquisition of scientific da- ta on the beneficial effects on human and on the welfare of the animal can create the conditions for a more efficient and stable communication within the working party, and with the health authorities (distribution of resources etc.), with patients and their families (informed consent etc.) and with the veterinary authorities that must check upon ani- mal welfare (veterinary vigilance etc.). a therapeutic alliance in addition to the scientific considerations and prior to attainment of data from research, one has to take into account that, for this discipline that we briefly define as “pet therapy”, a fundamental pre- supposition is that of a truly genuine relationship with the animal, on the part of both the patient and of the working party. human-animal communication is mostly emo- tional and, although based fundamentally on the identification of an asymmetry of roles, it should rely on the respect of the dignity of the individual, the welfare of the animal and the recognition of the importance of biodiversity. this attitude towards the animal can be a stimu- lus to the whole process of humanizing in medicine that wishes to recuperate with the paradigm of car- ing: transferring ones attention from the disease to the diseased, and from the diseased to the individ- ual themselves seen in his or her physical/psycho- logical entirety, may favor the study and use of such complementary therapies. these therapies intend to provide more integrated answers, considering not only the disease as an isolated fact but as a cul- mination of events including the individual’s social history etc. recommendations it is therefore hoped that: a) research for the characterization of the real benefits for human health and the welfare of the practices that involve animals (and also the research for studying neurophysiological and cognitive parameters that can be used to inter- pret their “language”) may be supported. this is especially important in the case of highly organ- ised practices such as the activities carried out with animals for assistance, the assisted activi- ties with animals (aaa) and above all, the as- sisted therapies with animals (aat); b) at the same time, research for the clarification of any alterations (in practices or in working procedures) that may lead to conditions of disease should be supported. as yet, the con- ditions of those animals utilised in therapy are not comprehensively understood and thus must be treated with a precautionary approach in order to exclude the possibility of stressful conditions; pasqualino santori a n im a l -a s s is t e d in t e r v e n t io n s in m e n t a l h e a l t h c) wild animals are not involved since they are not accustomed either to living with humans or liv- ing in a restricted environment and therefore would inevitably undergo a condition of ma- laise; d) efforts are put towards an improvement in the quality of life for those animals involved, using where possible, and without bias, animals from kennels, shelter homes, or those abandoned, as long as adequately selected and trained. it is necessary to take into consideration the condi- tions of life and welfare of the animal during all the stages of the project, even at its termination. it must be highlighted that in order to protect the interest of the animal, an adequate public vigilance must always be guaranteed; e) a possibility to maintain a relationship with one’s own animal is guaranteed in case of ad- mission to a residential structure. this is so to prevent renouncing the assistance value of such a relationship of affection and to avoid the risk of abandonment or euthanasia. furthermore, patients admitted to hospital structures should be permitted visits from their own animals, in appropriate spaces; f) ethical committees should be entrusted with the responsibility for evaluation of the protocols and the projects of research and their realization procedure, in which to provide the involvement of the animals in activities different from their traditional utilization; g) that the use of so-called “gentle” training tech- niques, the most possibly respectful for the dignity and welfare of the animal, should be promoted; h) it is important for physicians to be aware of the possible effects, especially psychological, of these practices. for this reason, it is also recom- mended to not generically advise the presence of an animal in a domestic environment without having first considered two factors. the poten- tial for the success of the relationship with the patient and the adequate knowledge required as regards the animal and its needs; i) in the utilization of animals, the benefits alone must not be the only factor under consideration. the risks associated with their use must also be contemplated, risks such as allergies and infec- tions (for example: the risk of toxoplasmosis transmission from a cat to a pregnant woman). the cnb wishes to remind in short, that pet therapy (in the aat form, that is, assisted therapy with ani- mals) is at present, in many of its applications, still a hypothesis of work. this hypothesis is still awaiting adequate supporting evidence through scientific meth- ods, which is deserving of public support, particularly when conducting scientific research. note the author was member of the national committee for bioethics from to . conflict of interest statement there are no potential conflicts of interest or any financial or per- sonal relationships with other people or organizations that could inappropriately bias conduct and findings of this study. submitted on invitation. accepted on october . toward eubiosia: bridging oncology and palliative care - dizon - - the oncologist - wiley online library 	skip to article content 	skip to article information cia- -who-would-benefit-from-memory-training--a-pilot-study-examin © kwok et al, publisher and licensee dove medical press ltd. this is an open access article which permits unrestricted noncommercial use, provided the original work is properly cited. clinical interventions in aging : – clinical interventions in aging dovepress submit your manuscript | www.dovepress.com dovepress o r i g i n a l r e s e a r c h open access to scientific and medical research open access full text article doi: . /cia.s who would benefit from memory training? a pilot study examining the ceiling effect of concurrent cognitive stimulation timothy cy kwok , wai wang chau kenneth sl yuen , anita ym wong jessie cy li rebecca yy shiu florence ky ho jockey club centre for positive ageing, hong kong; department of medicine and therapeutics, the chinese university of hong kong, hong kong; laboratory of neuropsychology, department of psychology, university of hong kong, pokfulam, hong kong; the hong kong chinese women’s club madam wong chan sook ying memorial care and attention home for the aged, hong kong correspondence: timothy cy kwok department of medicine and therapeutics, prince of wales hospital, the chinese university of hong kong, shatin, new territories, hong kong sar tel + fax + email tkwok@cuhk.edu.hk abstract: diverse effects of memory training were observed in the literature. one possible factor is the amount of concurrent cognitive training received during the training program. in this pilot study, we recruited elderly adults with or without concurrent cognitive stimulations to attend a memory-training program. findings suggested that elderly people without concurrent cognitive stimulation could benefit from a memory-training program in the form of improved initiation and memory functioning. self-rated quality of life measure also showed improvements alongside the cognitive benefits. elderly people with regular concurrent cognitive stimulation, on the other hand, seemed to plateau in their level of performance and did not show any significant change. our preliminary findings suggested nonlinear concurrent cognitive stimulation in the elderly. keywords: memory training, cognitive training, dementia, chinese, elderly introduction memory training is one of the most common nondrug-training modalities employed to act against alzheimer’s disease or dementia (ad), or mild cognitive impairment (mci). findings regarding the effect of memory training were diverse. in one study, patients with mild and mild-to-moderate ad demonstrated significant improvements in activities of daily living (adl) under an individualized procedural memory training for four months. in an evaluation study examining the effectiveness of four different interventions, an eight-week cognitive stimulation program significantly improved delayed memory performance in a group of demented elderly adults recruited from the community. similar positive findings were observed in a randomized controlled trial examining the effectiveness of an eight-week memory training group. on the other hand, a study showed that elderly people who suffered from mci had improved confidence in their memory functioning after a six-week memory skills training, but no significant difference in actual memory performance was observed between the treatment group and the control group. in a randomized placebo-controlled trial examining the effect of memory training, findings suggested that a six-week training on categorization and visualization techniques failed to improve memory functioning in a group of probable ad patients. no significant difference between the intervention and control groups was observed in a study with a group of dementia patients and their family caregivers who attended an intervention program comprising memory training and music therapy weekly for two years. with such diverse findings, are there any factors governing the success of one particular intervention regime? one potential factor is the degree of concurrent training participants received outside the study. apart from the training provided dur- c lin ic a l i n te rv e n tio n s in a g in g d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com mailto:tkwok@cuhk.edu.hk clinical interventions in aging : table list of modalities in the concurrent cognitive stimulation program received by the tc group core treatment modules of the day training center (tc group) • activities of daily living (adl) training • physiotherapy • reality orientation • reminiscence therapy • multisensory stimulation • music therapy • pet therapy • aroma therapy submit your manuscript | www.dovepress.com dovepress dovepress kwok et al ing individual studies, the amount of concurrent cognitive stimulation was usually not reported or even not controlled in previous studies. as there is a possibility that a high level of concurrent training may have already brought participants to the ceiling of their training potential, its effect should be subjected to empirical evaluation. in the current study, we report the findings of a pilot study comparing the effect of memory training in two different groups of participants, one group with a minimum amount of concurrent cognitive stimulation while the other group receives continuous training on general cognitive skills. to our knowledge this is the first study that empirically investigates the influence of concurrent training on the effectiveness of a memory-training program. we hypothesize that without concurrent training, participants would benefit more from memory training when compared to those with concurrent training. materials and methods participants and demographics twenty-four elderly chinese people with significant memory complaints ( men, women) volunteered to participate in this study. fifteen of them were service users of two com- munity recreational centers for the elderly (crc group). the remaining elderly adults were service users of a day training center for people with mci or dementia (tc group). baseline demographics are summarized in table . elderly from both groups had similar demographic parameters at the point of enrolment. no significant difference in age, educational level, or living companion was observed. general cognitive status screened with mini mental state examination showed no dif- ference between these two groups of people (p . . ). the crc group reported significantly higher levels of memory complaints than the tc group, as measured by an abbreviated memory inventory for chinese (score range: – ; crc group = . ± . (range: – ), tc group = . ± . (range: – ), p , . ). study design this is a prospective longitudinal study to investigate the effectiveness of memory training in elderly with or without concurrent cognitive stimulation. prior to the memory- training program, elderly in both groups received different levels of trainings through their respective centers. the tc group received continuous cognitive stimulation activities (see table ) for at least three days per week, but the crc group only participated in social and recreational activities. the continuous cognitive stimulation activities included eight sessions. “adl training” introduced some daily self-care activities and techniques, including but not limited to personal hygiene, grooming, dressing and undressing, and feeding. “physiotherapy” classes, eg, pain release, muscle strengthening, walking gait and balancing training, targeted an increase in muscle strength and body coordination to decrease the chance of falls. “reality orientation” tried to increase self-confidence and self-motivation for the elderly to stay active by providing information through the concepts of time, place, and people. “reminiscence therapy” involved the exchange of memories, information, wisdom, and skills among the elderly, their caregivers, and health professionals. this activity gave the elderly a sense of value, importance, belonging, power, and peace. “multisensory stimula- tion” exposed the elderly to a stimulating environment delivering lighting effects, color, sounds, music, scents, taste, and tactile experiences to stimulate various senses. such stimulation aimed to increase their concentration and it was hoped that this would relieve their behavioral table demographics and baseline measures variables group p value crc n = tc n = age (mean ± sd) . ± . ( – ) . ± . ( – ) . a education level, n (%) – no formal education ( . ) ( . ) . b – primary education ( . ) ( . ) – secondary education ( . ) ( . ) – university or above ( . ) ( . ) living companion, n (%) – with spouse ( . ) ( . ) . b – with siblings ( . ) ( . ) – alone with helpers ( . ) ( . ) – alone ( . ) ( . ) cmmse (mean ± sd) . ± . ( – ) . ± . ( – ) . a cdrs (mean ± sd) . ± . ( – ) . ± . ( – ) . a notes: astudent’s t-test; bchi-square test. abbreviations: cdrs, chinese version of mattis dementia rating scale; cmmse, chinese version of the mini-mental state examination; crc, community recreational center group; pwi, the personal well-being index; sd, standard deviation; tc, training center group. c lin ic a l i n te rv e n tio n s in a g in g d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com clinical interventions in aging : submit your manuscript | www.dovepress.com dovepress dovepress memory training problems. “music therapy” used music as the primary media to help participants express themselves and release their emotions. “pet therapy” was designed to improve the physical, social, emotional, and/or cognitive functioning of the elderly through interactions between the “comfort animals” and the participants. “aroma therapy” combined with massage practices, was designed to relieve their anxi- eties and provide comfort to the elderly by personal direct contact in a relaxing setting. all participants still received their respective activities throughout the study period. pre- and post-assessments were conducted before and right after the memory training program to evaluate the effectiveness. the assessments included the chinese version of the mini- mental state examination (cmmse), the chinese version of mattis dementia rating scale (cdrs), and the personal well-being index (pwi), which will be described later. informed consent was obtained from all participants. this study was approved by the research ethics committee of the chinese university of hong kong. memory-training program this is an eight-session group memory-training program administered by an occupational therapist following stan- dardized training protocol. the program was provided to all participants. one session was conducted twice a week at their respective daycare centers. the structure of the training program was based on the active trial supplemented by previous reports of effective training, and the contents were adapted for hong kong chinese elderly. , an outline of the memory-training program is shown in table . the “ education on memory deterioration and dementia” session introduced the process of normal aging, mci, and dementia to the elderly. “memory elements and memory games” taught the elderly to memorize and recall group members’ names by “face-recognition technique”. the card game (story-telling cards) and the interactive cd game (attention training exercise) were two key components of this session. “memory exercises” included attention training on visual- spatial and auditory attention. the “ mnemonics ” session aimed to teach the elderly to memorize things by categorizing and chunking functions. “mnemonics ” revised what was learnt in mnemonics , and delivered techniques on memorizing things in terms of shopping places. “ environmental awareness” tried to orientate the elderly to places, people, and public transpor- tation by visiting different communities in hong kong. the “lifestyle redesign” session aimed to introduce a healthy diet and relaxation techniques in the elderly, and encouraged them to participate more in social activities and visit sharing groups. the th session, “memory aids”, aimed to introduce smart living techniques, eg, effective use of a monthly scheduler and calendar, an alarm clock with larger font size, and the proper use of a phone book to record telephone numbers. homework assignments were given after each memory training session. outcome measures cognitive functioning general cognitive status was assessed using the cmmse. the cmmse was translated and validated by chiu et al in the hong kong chinese population. it is widely used in screening patients with general cognitive decline ( sensitivity = . and specificity = . , as validated from a study in hong kong). cdrs was also administered to provide a detailed profile of the participants’ level of cognitive functioning. cdrs examined five aspects of cognitive abilities, namely attention, initiation/perseveration, construction, conceptualization, and memory. good psychometric properties were observed in both the original mattis dementia rating scale (drs) and the chinese translated version (cronbach’s alpha = . and . respectively). , chan et al reported that a clinical cutoff score of on the cdrs will give a sensitivity of . and a specificity of . , providing good clinical utilities in the diagnosis of dementia. quality of life the pwi was administered to assess participants’ subjective perceptions on their quality of life (qol). the pwi was translated and validated in the hong kong population. cross-cultural equivalence in the construct structure was established using factor analysis and the reported psychometric properties of the chinese pwi was good (cronbach’s alpha = . ). statistical analysis data analyses were carried out with statistical package for social sciences (spss; software package version , table list of the eight-session memory-training program provided to all participants topics of memory training • education on memory deterioration and dementia • memory elements and memory games • memory exercises • mnemonics • mnemonics • environmental awareness • lifestyle redesign • memory aids c lin ic a l i n te rv e n tio n s in a g in g d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com clinical interventions in aging : submit your manuscript | www.dovepress.com dovepress dovepress kwok et al ibm, somers, ny). student’s t-test and chi-square test were used to compare numeric and categorical variables in baseline measurements respectively. two-way (training x group) repeated measures analysis of variance (anova) was used to examine the changes in cognitive functioning and quality of life after memory training between the crc and tc groups. statistically significant difference was set at p , . . post hoc bonferroni correction was used to correct any problems after multiple comparisons. results cognitive functioning marginally insignificant training x group interaction effect was observed in the cmmse (see table ). a trend of slight decline in cmmse score was observed in the tc group while the performance in the crc group remained stable over training. no other effect was statistically significant or approaching signif icance. using the more sensitive measure of cognitive functioning, that is, cdrs, signifi- cant main effect of group and significant training x group interaction effects were observed. post-hoc analysis revealed a slight but statistically significant improvement in the crc group’s performance on the cdrs total score after training (p , . ) whereas the tc group’s cdrs score remained at the same level (p . . ). the crc group had better performance on these subscales compared with the tc group generally. further analysis on the cdrs subscale scores revealed significant interaction effect on the initiation/perseveration subscale and margin- ally insignificant interaction effect on the memory subscale. post-hoc analyses on the initiation/perseveration and memory subscales showed significant improvements of performance in the crc group (p , . ), while the tc group’s performance remained at a similar level (p . . ). furthermore, significant main effects of group effects on the initiation/perseveration and memory subscales were observed. quality of life significant main effect of group and marginally insignificant training x group interaction effect were observed in the pwi. elderly in the tc group on average had a statistically significant better qol than the crc group. however, post- hoc analysis showed that improvements in their pwi scores over the course of training in the crc group was observed (p , . ), while the tc group maintained similar levels (p . . ). discussion the current study takes an initial step to examine how concurrent cognitive stimulation affects the effectiveness of memory training. we hypothesized that elderly people with- out any concurrent cognitive stimulation may benefit more from memory training than elderly people with concurrent cognitive stimulation. the result of this study indicated that the experience of concurrent cognitive stimulation can affect the efficacy of this type of intervention. table results of the pre- and post-training assessment on participants’ cognitive functioning and quality of life test group performance anova pre-training post-training group effect training effect group x training cmmse crc . ( . ) . ( . ) f( , ) = . , p = . f( , ) = . , p = . f( , ) = . , p = . btc . ( . ) . ( . ) cdrs total crc . ( . ) . ( . ) f( , ) = . , p = . a f( , ) = . , p = . f( , ) = . , p = . atc . ( . ) . ( . ) attention crc . ( . ) . ( . ) f( , ) = . , p = . f( , ) = . , p = . f( , ) = . , p = . tc . ( . ) . ( . ) initiation/perseveration crc . ( . ) . ( . ) f( , ) = . , p = . a f( , ) = . , p = . f( , ) = . , p = . atc . ( . ) . ( . ) construction crc . ( . ) . ( . ) f( , ) = . , p = . f( , ) = . , p = . f( , ) = . , p = . tc . ( . ) . ( . ) conceptualization crc . ( . ) . ( . ) f( , ) = . , p = . b f( , ) = . , p = . f( , ) = . , p = . tc . ( . ) . ( . ) memory crc . ( . ) . ( . ) f( , ) = . , p , . a f( , ) = . , p = . f( , ) = . , p = . btc . ( . ) . ( . ) pwi crc . ( . ) . ( . ) f( , ) = . , p = . a f( , ) = . , p = . f( , ) = . , p = . btc . ( . ) . ( . ) notes: astatistically significant results, p , . ; bmarginally insignificant results, p  . . number of subjects: crc = , tc = . abbreviations: anova, analysis of variance; cdrs, chinese version of mattis dementia rating scale; cmmse, chinese version of the mini-mental state examination; crc, community recreational center group; pwi, the personal well-being index; tc, training center group. c lin ic a l i n te rv e n tio n s in a g in g d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com clinical interventions in aging : submit your manuscript | www.dovepress.com dovepress dovepress memory training relatively few studies have invested premorbid personal variables besides age, gender, educational level, and socio- economic status in relation to the success of memory train- ing. existing studies could only conclude that concurrent involvement in complex cognitive activities is related to faster cognitive speed. studies investigating the ceiling effects were limited to the outcome measures but not concurrent cog- nitive stimulation. as cognitive training has become more popular as a therapeutic and preventive nonpharmacological intervention for people with cognitive decline, the chance of aged people with related training recruited into clinical trials involving cognitive interventions will increase in the future. researchers should be aware of the ceiling effect in data gathering. cognitive functioning with memory training, participants in the crc group showed a trend of improvement in general cognitive status, but not the tc group. the memory-training program in this study focused on enhancing selective cognitive functions of participants, including attention, registration, and recall, verbal fluency/word generation, perception, and prob- lem solving. these components were not included in the concurrent cognitive stimulation received by the tc group. both crc and tc groups did not show any effect across the memory training. contrasting the performance patterns of the crc and tc groups across the training, we specu- late that the training potential of the tc group for further improvement is relatively weak as compared to that of the crc group, due to the ceiling effect as a result of concur- rent training. participants who received concurrent cogni- tive stimulation, therefore, may not benefit from additional memory training in general. closer examination of the cdrs subscale scores indicated that the efficacy was limited to the initiation/ perseveration and memory subscales. improvement on the initiation/perseveration subscale, as observed in the crc group, may reveal important implications on the effect of the memory training. as the content of the memory training focused on skills improving memory ability, it is not surprising that improvement is reflected in the memory subscale. however, the cognitive ability examined by the initiation/perseveration subscale is more generalized and not specifically trained by the intervention program. furthermore, if test-retest practice effect exists, both crc and tc groups should have shown some improve- ments. in view of the differential patterns of changes in the total and subscale scores of cdrs between the crc and tc groups, retest-induced improvements should not be the best explanation for results obtained. as such, our findings reflected a true difference in the training poten- tial among elderly with or without concurrent cognitive stimulating activities. the cognitive stimulation should not be assumed to be linear when other concurrent train- ing is present. this nonlinear phenomenon is particularly important for researchers to consider in an attempt to evaluate the effectiveness of memory or other domains of cognitive training. as concurrent cognitive stimulating activities can affect the efficacy of cognitive training, the effect of previous involvements in cognitive stimulation and cognitive train- ing are also worth examining as most existing studies only exclude participants who were not currently enrolled in other research studies or clinical trials of cognitive training. – besides involvement in concurrent cognitive interventions, previous participation in the intervention group of other research may be another criteria researchers have to consider in the future. quality of life comparing the difference in the level of cognitive functioning in these two groups of elderly individuals, a similar trend of change in self-reported qol after the memory training is also observed. the crc group had statistically significant improvement in their pwi ratings whilst ratings by the tc group remained unchanged. one possible explanation for the change is that improvement in the crc group’s memory func- tioning has a positive impact on their adls. improvements in memory functioning may enhance older people’s self- confidence, resulting in an increase in their own rating of their qol. an alternative explanation is that memory training acted as a placebo to the participants in the crc group and enhanced their confidence in performing tasks. participants in the tc group, on the other hand, attended routine training for at least days a week. they have received adequate care continuously and thus the self-rated level of qol may not change across the training. this speculation requires further studies for verification. in conclusion, we have presented preliminary findings on the effect of concurrent cognitive stimulation on the training potential of the elderly population. our data suggested that older people without concurrent training may benefit from a memory-training program more than those who receive continuous training. the factor of nonlinear concurrent cognitive stimulation should be considered in evaluating the effectiveness of memory training. c lin ic a l i n te rv e n tio n s in a g in g d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com clinical interventions in aging publish your work in this journal submit your manuscript here: http://www.dovepress.com/clinical-interventions-in-aging-journal clinical interventions in aging is an international, peer-reviewed journal focusing on evidence-based reports on the value or lack thereof of treat- ments intended to prevent or delay the onset of maladaptive correlates of aging in human beings. this journal is indexed on pubmed central, medline, the american chemical society’s ‘chemical abstracts ser- vice’ (cas), scopus and the elsevier bibliographic databases. the manuscript management system is completely online and includes a very quick and fair peer-review system, which is all easy to use. visit http://www.dovepress.com/testimonials.php to read real quotes from published authors. clinical interventions in aging : submit your manuscript | www.dovepress.com dovepress dovepress dovepress kwok et al limitations the major limitation of this study is the small sample size to create a representative conclusion. this is a pilot study sharing the initial findings. a large-scale study following the pilot study with a large sample size based on similar settings is pending. data generalizability is also an issue as a result of the small sample size although baseline information does not reflect this issue. the long-term effect of the concurrent memory program could be explored by assessing the partici- pants after the training program, at perhaps months. disclosure no conflicts of interest were declared in relation to this paper. references . grasel e, wiltfang j, kornhuber j. non-drug therapies for dementia: an overview of the current situation with regard to proof of effectiveness. 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(chinese-cantonese). melbourne: school of psychology, deakin university; . . lau ald, cummins ra, mcpherson w. an investigation into the cross-cultural equivalence of the personal wellbeing index. soc indic res. ; ( ): – . . bielak aam, hughes tf, small bj, dixon ra. it’s never too late to engage in lifestyle activities: significant concurrent but not change relationships between lifestyle activities and cognitive speed. j gerontol b psychol sci soc sci. ; ( ): – . . mahncke hw, connor bb, appelman j, et al. memory enhancement in healthy older adults using a brain plasticity-based training program: a randomized, controlled study. proc natl acad sci u s a. ; ( ): – . . barnes de, yaffe k, belfor n, et al. computer-based cognitive train- ing for mild cognitive impairment: results from a pilot randomized, controlled trial. alzheimer dis assoc disord. ; ( ): – . . mahncke hw, connor bb, appelman j, et al. memory enhancement in healthy older adults using a brain plasticity-based training program: a randomized, controlled study. proc natl acad sci u s a. ; ( ): – . . smith ge, housen p, yaffe k, et al. a cognitive training program based on principles of brain plasticity: results from the improvement in memory with plasticity-based adaptive cognitive training (impact) study. j am geriatr soc. ; ( ): – . c lin ic a l i n te rv e n tio n s in a g in g d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / http://www.dovepress.com/clinical-interventions-in-aging-journal www.dovepress.com www.dovepress.com www.dovepress.com www.dovepress.com 	publication info : 	nimber of times reviewed: ‘she had a smile on her face as wide as the great australian bite’: a qualitative examination of family perceptions of a therapeutic robot and a plush toy running title: family perceptions of paro and plush toy professor wendy moyle phda,b* w.moyle@griffith.edu.au dr marguerite bramble phdc mbramble@csu.edu.au dr cindy j jones phda,b c.jones@griffith.edu.au ms jenny e murfield bsc(hons)a j.murfield@griffith.edu.au amenzies health institute queensland, griffith university, nathan, brisbane, queensland, australia bschool of nursing and midwifery, nathan campus, griffith university, nathan, brisbane, queensland, australia cschool of nursing, midwifery and indigenous health, bathurst campus, charles sturt university, bathurst, new south wales, australia address correspondence to professor wendy moyle, menzies health institute qld, griffith university, . health sciences (n ), kessels road, nathan, brisbane, queensland, , australia. tel: + ; fax: + ; email: w.moyle@griffith.edu.au funding this work was supported by a grant from the australian national health and medical research council ( ). mailto:w.moyle@griffith.edu.au mailto:mbramble@csu.edu.au mailto:c.jones@griffith.edu.au mailto:j.murfield@griffith.edu.au mailto:w.moyle@griffith.edu.au acknowledgements thanks are expressed to all aged care organisations, facilities, care staff, residents, and families who so generously took part in the research. specific thanks are also extended to dr. jasmin grayson-collins for project management, cluster leadership, and help with conducting some of the interviews, and to amanda mcniven for cluster leadership. the following members of the larger paro study, who were not involved in the qualitative interviews and analysis, are also acknowledged for their contribution to the paro protocol: professors elizabeth beattie, brian draper, david shum, and lukman thalib; and drs siobhan o’dwyer and cindy mervin. conflicts of interest wendy moyle was personally loaned equipment (five of the paro) for the duration of the cluster-rct by the developer, dr. takanori shibata. dr. shibata provided no monetary support for the study, and had no role in any aspect of the study design, undertaking data analysis and results interpretation, and in the reporting of the findings and preparation of the manuscript. all other authors declare no financial, personal, or potential conflicts of interest. description of authors’ role wendy moyle conceived and designed the larger study, in consultation and review with cindy jones. wendy moyle and marguerite bramble oversaw the qualitative data collection, and marguerite bramble conducted the interviews. wendy moyle and marguerite bramble analysed the data and prepared a first manuscript draft. all authors provided conceptual comment and revision, and approved the final version on the manuscript. ‘she had a smile on her face as wide as the great australian bite’: a qualitative examination of family perceptions of a therapeutic robot and a plush toy abstract background and objectives: recent years have seen social robotic pets introduced as a means of treating behavioural and psychological symptoms of dementia, and many show promising potential. in this study, we sought to explore family members’ perceptions of the japanese-developed baby harp seal, paro (version ), and a look-alike, non-robotic plush toy, when used by their relative with dementia for -minutes, three afternoons per week for weeks. research design and method: the study employed a descriptive qualitative approach, which was nested within a larger cluster-randomised controlled trial. a convenience sample of family members (n = each from the paro and plush toy conditions) with relatives in nine long-term care facilities in queensland, australia, completed individual semi-structured interviews (telephone or face-to-face). inductive, data-driven thematic analysis of the data was undertaken with the assistance of the qualitative management software, atlas.ti®. results: family members of long-term care residents with dementia expressed positive perceptions of the paro, perceiving that it improved mood, reduced agitation, and provided opportunity for communication for their relative. negative perceptions of the plush toy were given by family members, primarily because of its lack of movement and engagement. conclusion: family members were keen for their older relative with dementia to use a social robot that moved and engaged with them, and plush toys that were static and unresponsive were perceived as being unimportant in improving quality of life. however, the current cost of paro was identified by family members as a major limitation to use. keywords: social robot, long-term care, dementia. ‘she had a smile on her face as wide as the great australian bite’: a qualitative examination of family perceptions of a therapeutic robot and a plush toy introduction the number of people with dementia is on the rise alongside an ageing population. the majority of people with dementia end their life in long-term care (ltc) facilities, with the proportion of people with dementia in these facilities ranging from over % in australia (australian institute of health and welfare, ) to over % in the uk (prince et al., ). further, of these, approximately one in five residents experience symptoms of dementia-related agitation (morley, ). presenting as verbal aggression, destructive and resistive behaviour, pacing, and repetitive questioning and motor behaviour, symptoms of agitation occur most commonly in people with mid-stage dementia and, for many, can be a result of unmet needs. these adverse behaviours can challenge the caregiving process, and this can result in stress and job dissatisfaction in staff members (zimmerman et al., ), and can lead to diminished quality of life and functionality (klapwijk, caljouw, pieper, van der steen, & achterberg, ), as well as feelings of loneliness and social isolation (moyle et al., ), for the person with dementia. behavioural and psychological symptoms of dementia (bpsd) such as agitation are treatable and, by doing so, offers the best chance to alleviate suffering, reduce family burden, and lower societal costs in people with dementia (cummings et al., ). historically, psychotropic medication has been the first-line of treatment for alleviating bpsd. however, in light of limited efficacy and potential harmful side-effects of pharmacological approaches (moyle et al., ), psychosocial approaches are now advocated as the primary treatment for symptomatic benefit of bpsd (banerjee, ). residents in ltc facilities often spend the majority of their time alone and with limited stimulation of the senses, empty conversation, or engagement in meaningful activities (moyle et al., ). this lack of stimulation can be particularly detrimental to people with dementia, as it can adversely affect their mood, increase their level of agitation, and result in a high use of pharmaceutical intervention (moyle et al., b). to address this, social robots have recently been used as a treatment for bpsd, engaging humans in life-like social behaviour and interacting with people by encouraging engagement, embodiment, and interaction in an activity similar to pet therapy (mordoch, ossterreicher, guse, roger, & thompson, ). as technological advances take place, and robots become more cost- effective, it is likely that we will see an increase in the use of social robots in future aged and dementia care. to date, a range of social robots have been developed for use within this population and, of these, the most commonly studied pet-type robot is paro (figure ), a robotic harp seal developed in japan by dr. takanori shibata (national institute of advanced industrial science and technology, japan). approximately the size of a newborn baby, paro behaves like a pet by encouraging interaction and engagement through sensors in its synthetic coat and whiskers. by stroking paro, the robot responds by turning to the person, mimicking the sound of a seal, and moving its tail and paws. through this engagement, paro delivers companionship and affection to the individual. the robot was designed as a harp seal due to its unfamiliarity, thereby reducing negative associations users may have with more common household animals, such as dogs or cats. paro’s potential for use with people with dementia has been shown in a handful of small-scale trials on outcomes including quality of life, engagement, agitation, and apathy (joranson, pedersen, rokstad, & ihlebaek, ; moyle et al., ; petersen, houston, qin, tague, & studley, ; takayanagi, kirita, & shibata, ; thodberg et al., ). building on this initial work, and addressing some of the shortcomings of the research conducted to date (bemelmans, gelderblom, jonker, & de witte, ), we sought to establish paro’s efficacy to improve bpsd in a robust and rigorous cluster-randomised controlled trial (rct) (moyle et al., ). involving older people with dementia from ltc facilities, we compared paro (version ) with a look-alike plush toy (paro with the artificial intelligence turned off so that it did not move or respond), and usual care. facilities were randomised to one condition only, and participating residents received individual, non- facilitated, -minute sessions three afternoons per week (monday, wednesday, and friday between : and : ) for -weeks, with either the paro or a plush toy. facilities in the usual care group continued care as standard. as we describe in detail elsewhere (moyle et al., accepted for publication), we found that paro had a modest but significant effect on bpsd, encouraging residents’ verbal and visual engagement with the object, improving their expressions of pleasure and reducing their neutral affect, and having some effect in reducing agitation. in further qualitative work conducted after the completion of the rct (moyle, bramble, jones, & murfield, a), we also found that care staff from participating facilities preferred the paro to the plush toy, and perceived it as having particular potential to improve quality of life. however, staff were concerned that the current high cost of paro (~$ , aud) may prohibit use within ltc facilities. within this paper, we present our work exploring the perceptions of family members about the use of paro and plush toy with their older relative with dementia in ltc. these findings complement the qualitative work undertaken exploring staff perceptions, and provide important insights into how families may specifically influence the use of paro in the ltc setting. [insert figure about here] methods design this qualitative study was nested within a larger cluster-rct that compared the effect of paro with a look-alike plush toy (a paro with all robotic features disabled), and usual care in reducing agitation, and improving mood states and engagement (moyle et al., ; moyle et al., accepted for publication). we chose a qualitative design to explore the individual family member’s perception of the paro robotic seal compared to the plush toy, and his/her experience in relation to bpsd. family members did not facilitate their relatives’ use of the paro and plush toy during the trial – all sessions were un-facilitated – but they had opportunities to observe their relative during these sessions. sampling strategy maximum variation sampling was used to identify a range of facilities (nine out of ), from which family members involved in the larger cluster-rct could be approached for interview. a convenience sample of twenty family members from the paro (n = ) and plush toy (n = ) study conditions (facilities) was set a priori to achieve sufficient variation in the sample. this sample size was based on our previous work undertaken with care staff (moyle et al., a), which showed a total of participants was sufficient to generate data-driven themes. however, if we felt data saturation was not achieved with this sample size we were prepared to extend the sample size. fourteen family members or friends with relatives in the paro condition were identified by facility managers as being interested in attending an interview, and the first ten with availability were interviewed. the same process was followed for the plush toy condition, with family members identified by facility managers, and the first ten with availability interviewed. ethical approval ethical approval was obtained from griffith university human research ethics committee (nrs/ / /hrec), as well as respective care organisations, as required. written informed consent was obtained from all participating family members at the time of interview. the study is registered with the australian new zealand clinical trials registry (actrn ). data collection two members of the research team conducted semi-structured interviews with family members of people with dementia who participated in the larger study two weeks following its completion. interviews were conducted using a schedule focused on seven areas of questioning (table ), but permitted further probing in relation to responses, as necessary. all interviews were conducted either by telephone or face-to-face at the facility, and ranged in length from to minutes. interviews were recorded using a digital audio recorder and then transcribed verbatim by an independent transcription service. [insert table about here] data analysis the qualitative management software, atlas.ti® (scientific software development gmbh, berlin), was used to support the researchers to inductively code and categorise the interview transcripts to produce data-driven codes. the codes were labels applied to words or phrases within the transcripts. two members of the research team undertook the analysis separately, writing memos that were stand-alone or linked to quotations, or codes. the researchers then came together for a collective discussion and to share their results and to discuss in order to reach a consensus for each code. codes were grouped into themes using an inductive thematic analysis (a bottom-up approach) to converge and compare themes across family member quotations (braun & clarke, ). themes were grouped according to family member’s perceptions of the paro or plush toy, and linked to the larger-rct’s primary outcomes of interest – agitation, mood states, and engagement (table ). representative quotations are used to support the analysis, and family identification codes are outlined in table . [insert tables & about here] findings four daughters, three sons, and a wife, husband, and friend from the paro condition were individually interviewed. in the plush toy condition, seven daughters, one son, and two wives agreed to be interviewed (table ). [insert table about here] theme : initial perceptions of the paro and plush toy as stimulation, comfort, and companionship family members’ initial perceptions of the paro were focused on their relatives’ love of animals and their perception that their wellbeing would improve, “because they love animals” [fd ]. although there was a general perception that live animals would be better than animated ones, families consented for their family members to be involved in the study, as they hoped the animal robot would calm their relative. one daughter stated, “anything’s worth a try to make her a little more contented” [fd ]. a wife, who wished that the paro would help settle her husband’s agitation, also expressed this sentiment, “he was constantly - how can i say it? constantly on the go, like couldn't settle” [fw ]. as animal lovers and pet owners, family members understood how important pets had been in their relatives’ lives and hoped paro would provide meaningful activity (“my perception was that she would probably respond quite well to it because, as i say, she lived and breathed the dog when she had it” [fs ]). one family member thought the paro would provide other therapeutic benefits, such as improved cognitive ability, and complement other therapies, such as reminiscence (“i thought it would be a sensory stimulation and actively involve the residents with the stimulation and help improve their cognitive ability as well by stimulating that too with memories and reminiscing, that type of thing” [fs ]). family members from the plush toy sites also talked as if the plush toy was another animal residents would enjoy (“there seemed to be a smile on the face of the residents when an animal came in. so, i would think that most would have a very positive response” [fs ]). one daughter from a plush toy site talked about the pleasure the seal might bring to her father (“i actually saw an article on the tv about it and i thought oh, that's interesting. what i saw was the pleasure on people's faces... then i was asked, would you like dad to be involved? i said, well i'd love it because dad was such an animal lover, he responds well to animals” [fd ]). for all family members, their initial perceptions of the paro and plush toy were of, “something tactile, something that was moving, something that was stimulating” [fd ]. they hoped that this ‘live animal’ robot would provide stimulation, comfort and companionship, thus reducing anxiety and improving wellbeing for the resident. theme : changing perceptions: movement and engagement vs. non-movement when family members witnessed their relative with dementia interact with the paro, they were impressed with how the animal robot could provide a sense of responsibility and a connection to a familiar pet, such as a dog. positive comments included, “she seemed very content just sitting there, patting the seal and looking at it” [fd ]; and “she really enjoyed having it there … she was looking forward to it every day. she felt responsible for looking after it. she thought it was someone’s dog” [fd ]. the importance of the animal robot in improving residents’ wellbeing came through in the interviews. one daughter talked about the psychological triggers and emotional needs of her mother, whom she thought, “needs that connection with an animal and actually think it’s alive … it does help psychologically” [fd ]. another daughter talked simply about paro providing stimulation and relieving boredom as, “she's always been bored in there [nursing home] …. so, she liked interacting with it because it gave her something to do” [fd ]. a third daughter talked in glowing terms about the improvement paro had made in her mother’s mood saying, “mum just loved it. she talked to it. she had a smile on her face as wide as the great australian bite. it definitely did make a difference to her mood” [fd ]. in comparison, family members’ discussion about their changing perceptions of the plush toy was focused on disappointment and, specifically, the lack of movement and ability of the plush toy to interact with residents. family members had assumed their relative was in the paro group and were disappointed when they viewed the plush toy (“well, it didn't move, it didn't make a noise” [fd ]). families also perceived that their relative was not interested in the plush toy because of its lack of presence and therapeutic ability. one wife who visited her husband described her experience of the plush toy with her husband (“he didn't seem to be that interested” [fw ]). another daughter commented that, “it was not like moving or anything, it was just …. i think he would be better with something that actually moves” [fd ]. theme : paro’s ability to reduce behavioural and psychological symptoms of dementia when family members discussed the benefits of paro they talked about its ability to reduce the behavioural and psychological triggers of dementia by providing stimulation and reducing agitation. they described the subsequent improvement in interpersonal relationships and social interaction as having ‘something to love’. on further reflection, family members made positive comments about the effect of the paro on residents’ mood, such as, “everybody i saw with it, it certainly seemed to lighten their mood” [fh ]; and “it’s close companionship … the fact that it reacts to the voice, can move when you pat it” [fd ]. one family member felt that, “it probably makes them think a little differently because there’s another element in their life. it helped her get through the afternoons” [fd ]. family members were particularly interested in the benefits of paro that they associated with emotional and social engagement, and a reduction in loneliness and reminiscence (“maybe just the interacting with the soft fur of the seal makes them remember perhaps when they were younger, or something like that … there were some mornings when she seemed quite with it, and less agitated” [fd ]). some family members touched on the fact that it did not seem to matter whether it was a seal or a dog, as long as the resident perceived it to be real (“so i think for her it's a companion, somebody to talk to, she's not lonely, nowhere near as agitated because she's got nothing to do. she's got the dog to talk to - well the seal to talk to [laughs]” [fd ]). in comparison, family members at the plush toy sites did not feel it had many, if any, benefits (“not really, not when it's not working. it may be different if it did move or it did make a noise or whatever but, to me, no … that was why i agreed to it, to the survey, because i anticipated that it would be like a little talking dog or something that he may have, perhaps, taken notice of. i was disappointed… - he wouldn't have known anyway. when i use a robotic seal, you imagine it moves or it makes noises. you don't imagine it just to be a fluffy toy” [fw ]). while the plush toy family members dwelled on the unresponsiveness of the plush toy, they also spoke of the benefits of giving a ‘live animal’ robot to their family member. for example, one son stated, “the normal human empathetic feelings that you might have when you're with your dog that you love, that sort of thing. it's still giving that tactile contact with some interaction of a live animal, without the problems of a live animal. …. the needs are still there. they still feel lonely. they still feel distressed. all of those human needs that are still there” [fs ]. theme : limitations of the paro and plush toy although families were generally impressed with the paro, the major limitation identified was the cost, with one family participant saying, “the experience is good, but i still think it's highly overpriced” [fd ]. another commented, “if she had to pay $ , or $ a month, yeah, it would limit it. i mean we've ended up with a (toy) dog for $ [purchased independently by the family after the trial] that seems to do the same thing” [fd ]. another limitation centred on family participants concern about how their relative with dementia might respond to paro. concerns were mainly centred on the use of an intervention that may be seen by residents as being toy-like. for example, a participant commented that, “it's not real, and you could see that sometimes in some of the people. they may think that you're treating them like kids” [fd ]. similarly, at the plush toy site, family members felt that residents with dementia could perceive it was, “fake, and maybe that wouldn't work so well” [fd ]. in addition, family members at the plush toy site were concerned about the seal being an unfamiliar animal and, therefore, being seen as a ‘fake animal’ (“i have reservations about her really connecting there. maybe a small puppy or something [would be better]” [fs ]). other limitations about plush toy were that, “to me it was just a white furry thing that he didn't take much notice of” [fw ], and “simply that it was inanimate. that it wasn’t in any way going to respond to her” [fd ]. theme . opportunities for family involvement all family members expressed interest in, and commitment to, being personally involved with the paro as ‘pet therapy’, either as a group activity or alone with their relative in their room. as family members visited regularly, they knew the time of day most suited to their relative for therapeutic engagement with paro. all family members, once again, focused their involvement on meaningful activities and mutual experiences to alleviate psychological triggers, to help keep their relative calm, provide stimulation, and something to love. as one family member suggested, “it'd be like taking one of our pets in” [fd ]. it is worth noting that all family members (except for one friend) had an extra layer of responsibility for their relative’s well-being in their role as power of attorney. this may, arguably, add another dimension to their sense of commitment and should be borne in mind. when discussing ways to be involved, daughters, in particular, revealed long-term intimate knowledge and tacit understanding of the impact of dementia on their parent. this tacit knowledge was reflected in one family member’s comments about bpsd, such as agitation and visual agnosia (“if i have my dog or there is the seal, she concentrates on that rather than repetition …. it certainly makes the visit easier …” [fd ]). she also talked about the “terrible tantrums” her mother has had “for years”, and how the paro would be a “distraction to settle her down and make her calm’ [fd ]. other daughters talked about how paro would, “break the boredom of the day” [fd ] and, “…his animated talk. but they took that on for real. so, he was actually conversing with them (paro) i guess” [fd ]. spouses also wanted to be involved in utilising paro to help fulfil individual needs of their partner. for example, one husband explained, “rosemary loves to walk. so, if she was walking around the lake and she had roy (paro) sitting on her walker, i have no doubt she'd have a smile on her face the whole time” [fh ]. one wife suggested the paro could help with her conversations and involvement, such as, “well i would sit and talk to him about it or - if he was awake of course. i would sit and talk to him” [fw ]. theme : robot better than live animal family members from both the paro and plush toy sites thought that live animals were great for pet therapy but that a robotic animal would be better because, “you don’t have to feed it, you don’t have to clean up, it never gets sick” [fd ]. however, one participant stated, “i'd rather bring the dog. the only reason i don't bring him more frequently is, usually, i have washing (clean laundry to bring in) and the dog does jump. i've got to be very careful that i carry him in case he jumped on another resident” [fw ]. they also commented that the seal, “doesn't get upset and kick and buck and scratch and carry on” [fh ]. one family member concluded, “i think the best way to go with this is things like the seal (paro). i really do” [fw ]. this was summarised well by another family member (“pet therapy and music therapy - i think are incredibly important, because they have that real interaction with a stimulating external environment [but] there's also the chance that someone could get bitten” [fd ]). one family participant talked about the importance of paro in communicating with the resident stating, “so with the noise that he makes and he talks. she (person with dementia) said he (paro) answers me, he talks to me. when i ask him a question he talks to me. that type of thing, so as long as it was some sort of a reaction like that, yeah, i think they'd be quite happy to be a part of it” [fh ]. although the paro was designed as an unfamiliar animal, concerns about this were also raised. one family member commented that, “a more recognisable animal might be better. i mean mum would have recognised a dog toy” [fd ]. discussion in this qualitative investigation, we found that family members of ltc residents with dementia had a positive view of paro. families were keen for their relative to use a social robot that moved and engaged with them, perceiving that it improved mood, reduced agitation, and provided comfort and opportunity for communication for their relative. these findings are consistent with the only other known study that explored family members’ views, where families saw paro as a means of engagement for their relative with dementia, as well as offering interest, amusement, and also reassurance (robinson, macdonald, kerse, & broadbent, ). regarding the use of a plush toy as a psychosocial intervention to ameliorate bpsd, family members held negative perceptions and deemed it unimportant in improving quality of life due to lack of movement and unresponsiveness. these negative sentiments are consistent with the views of facility staff members from the larger-rct, where it was also expressed that plush toys were unbeneficial to the person with dementia due to their lack of movement (moyle et al., a). in addition, the views of families also lend support to our main analyses of the primary outcomes from the rct, where we found that paro was significantly more effective than the plush toy in encouraging verbal and visual engagement (moyle et al., accepted for publication). this suggests that the robotic features of paro may be central in encouraging resident engagement and interaction compared to a non-robotic plush toy equivalent. in terms of paro’s limitations, family members identified the current cost of paro as its major limitation to use in ltc. similar concerns were also expressed by facility care staff (moyle et al., a), suggesting that, despite recognising paro’s benefit for residents with dementia, the current cost of paro may preclude uptake by those individuals caring for the person with dementia. an economic evaluation of paro’s cost-effectiveness is currently being undertaken as part of the larger rct, and will provide much-needed information to inform budgetary decisions about purchasing paro. another key finding emerging from this qualitative exploration was that families were eager for their older relative with dementia to be involved in the larger robotic rct, as they perceived that the robot might help comfort their family member and may reduce their agitation and distress. although families were informed in written information materials that their family member would be randomised to one of three conditions – paro, plush toy, or usual care – they expressed their disappointment when the facility their family member resided in was allocated to receive the plush toy. these findings highlight the challenge of recruiting participants to rcts, and to conditions that family perceive as not being important, but that are needed to allow rigorous treatment comparison. although there are ethical debates about the use of social robots in dementia (sharkey, ; sharkey & sharkey, ), this study highlights that families are open and willing to adopt paro as a companion animal for their family member. further, the study also highlights the importance family members hold for psychosocial interventions, including technological innovations such as the robot paro. where there is no cure, and where the person with dementia is highly agitated, the promise of an intervention to assist, and possibly show, the positive aspects of a person’s behaviour is seen as the provision of hope. hope, in this sense, is a catalyst that may assist family members to cope with the signs and symptoms of dementia (cotter, ). whilst this study adds important and needed insights into family members’ perceptions of paro, which, to date, has been explored in only one other study (robinson et al., ), there are a number of limitations the reader should be mindful of. first, generalisability is limited, as the study was small in scale (n = ), limited to one australian state only (queensland), and involved family members who had either previously owned a pet themselves, or their relative had. further, the perceptions of family members are limited to the use of paro or a plush toy over a -week period, given that this was the time-frame of the larger rct. a longer duration may have seen perceptions change. finally, the disappointment expressed by family members about the plush toy may have been exacerbated because of the random allocation of their relatives’ facility to the plush toy group rather than the paro group. perceptions towards a plush toy, without the potential to receive sessions with paro, may have seen more positive perceptions. conclusion given the limited effectiveness of pharmacological interventions and the growing number of people with dementia, it is important that we consider opportunities, such as the use of robots, to provide companionship for people with dementia. paro is one type of social robot that is currently available for use with older people with dementia in ltc and, as this study shows, as well as our wider research program, paro is positively perceived by both family members and care staff (moyle et al., a), and brings modest but significant improvements in aspects of engagement, mood, and agitation (moyle et al., accepted for publication). with the opportunities extending and capabilities of robots increasing, there is little doubt that there will be a place for robots, including paro, in future dementia care. references australian institute of health and welfare. 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( ). attitudes, stress, and satisfaction of staff who care for residents with dementia. the gerontologist, spec no , - . table titles and figure captions figure . paro (version ) therapeutic companion robot (permission for image given by the national institute of advanced industrial science and technology (aist), japan) table . interview questions with family members (n = ) table . family code book paro and plush toy table . family identification codes table . characteristics of family member participants (n = ) figure . paro (version ) therapeutic companion robot (permission for image given by the national institute of advanced industrial science and technology (aist), japan) table . interview questions with family members (n = ) . what were your initial perceptions of the robotic animal/plush toy? . did your initial perception of the robotic animal/plush toy remain or change over time? . what, if any, do you see as the benefits of the robotic animal/plush toy in dementia care? . what, if any, do you see are the limitations/concerns about the robotic animal/plush toy in dementia care? . tell me how you might use the robotic animal/plush toy in dementia care? (when, where, time of day, individual, group?) . are there any alternatives to the robotic animal/plush toy that could be used in dementia care? . tell me how your perception of the cost of the robotic animal/plush toy, maintenance, and training requirements? table . family code book paro and plush toy content area paro plush toy links to agitation, mood and engagement initial perceptions live animal dog animal lover great idea stimulation calming cuddly live animal animal lover did not see it interaction comfort dog sensory stimulation improve cognition reminiscence anxiety associate with pet dog stimulation calming meaningful activity changing perceptions when seen with relative interact happy/improve mood companionship stimulation/breaking boredom contented address loneliness comfort enjoy sitting still responsibility disappointment did not move toy did not see it did not engage big white thing knew not real did not distract paro emotional needs met improve mood interaction - help with social isolation stimulation reduce agitation provide comfort plush toy disappointment no therapeutic qualities benefits social interaction something to love reduce agitation stimulation focus conversation brings back memories family replacement needs to move discussed benefits of paro rather than toy paro reduce psychological triggers improvement in interpersonal relationships stimulation reduce bpsd reduce loneliness emotional and social engagement with family reminiscence reduce wandering distraction interactive emotional engagement limitations/ concerns cost heavy not familiar pet limited movement maintaining hygiene not an animal cost toy did not move heavy could not see seal’s eyes paro too expensive not familiar hygiene may be issue plush toy did not move/heavy/could not see seal’s eyes involvement yes as pet therapy group activity mornings alone in room afternoon help calm focus conversation break boredom something to love yes mutual experience afternoon when sad communal situations socialisation weekends when mum agitated focus conversation bring back memories in room alone paro all family members want to be involved in meaningful activities aim to meet needs of individual – person centred something to share and love with person with dementia - perceives paro to be real (visual agnosia) with encouragement from family – mutual experience. social experience especially at weekends happy memories of family and pets helps with sadness and loneliness helps with agitation alternatives live animal but robotic animal better toy but doesn’t interact real animal but not practical small puppy ragdoll cat not applicable further responses enjoyed experience interaction when family not present helps with cognitive skills not applicable table . family identification codes identification codes family category fd daughter fd daughter fd daughter fd daughter fd daughter fd daughter fd daughter fd daughter fd daughter fd daughter fd daughter fs son fs son fs son fs son fw wife fw wife fw wife fw husband ff friend table . characteristics of family member participants (n = ) family member demographics paro group (n = ) plush toy group (n = ) frequency frequency age (range; years) - - gender male female cultural background/nationality australian eastern european british new zealander employment/previous occupation management labourer - academic - home duties - retired - unknown - relationship to resident daughter son husband - wife friend - power of attorney for the resident: yes length of time as carer for resident (range; years) - - approximate number of visits to resident per month (range) daily - once a wka daily - once a wk family member/resident previously had a pet: yes note: aexcluding friend from overseas; wk = week. .. jiménez et al. bmc microbiology , : http://www.biomedcentral.com/ - / / research article open access antibiotic resistance, virulence determinants and production of biogenic amines among enterococci from ovine, feline, canine, porcine and human milk esther jiménez , victor ladero , irene chico , antonio maldonado-barragán , maría lópez , virginia martín , , leonides fernández , , maría fernández , miguel a Álvarez , carmen torres and juan m rodríguez , * abstract background: recent studies have shown that mammalian milk represents a continuous supply of commensal bacteria, including enterococci. the objectives of this study were to evaluate the presence of enterococci in milk of different species and to screen them for several genetic and phenotypic traits of clinical significance among enterococci. results: samples were obtained from, at least, nine porcine, canine, ovine, feline and human healthy hosts. enterococci could be isolated, at a concentration of . × - . × cfu/ml, from all the porcine samples and, also from , , and % of the human, canine, feline and ovine ones, respectively. they were identified as enterococcus faecalis, enterococcus faecium, enterococcus hirae, enterococcus casseliflavus and enterococcus durans. among the initial enterococcal isolates, were selected on the basis of their different pfge profiles and further characterized. mlst analysis revealed a wide diversity of sts among the e. faecalis and e. faecium strains, including some frequently associated to hospital infections and novel sts. all the e. faecalis strains possessed some of the potential virulence determinants (cad, ccf, cob, cpd, efaafs, agg , gele, cyla, espfs) assayed while the e. faecium ones only harboured the efaafm gene. all the tested strains were susceptible to tigecycline, linezolid and vancomycin, and produced tyramine. their susceptibility to the rest of the antimicrobials and their ability to produce other biogenic amines varied depending on the strain. enterococci strains isolated from porcine samples showed the widest spectrum of antibiotic resistance. conclusions: enterococci isolated from milk of different mammals showed a great genetic diversity. the wide distribution of virulence genes and/or antibiotic resistance among the e. faecalis and e. faecium isolates indicates that they can constitute a reservoir of such traits and a risk to animal and human health. keywords: enterococcus, milk, mammals, virulence, antibiotic resistance, biogenic amines * correspondence: jmrodrig@vet.ucm.es departamento de nutrición, bromatología y tecnología de los alimentos, universidad complutense de madrid, ciudad universitaria, avda. puerta de hierro, madrid s/n. , spain probisearch. c/santiago grisolía, tres cantos . , spain full list of author information is available at the end of the article © jiménez et al.; licensee biomed central ltd. this is an open access article distributed under the terms of the creative commons attribution license (http://creativecommons.org/licenses/by/ . ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. mailto:jmrodrig@vet.ucm.es http://creativecommons.org/licenses/by/ . jiménez et al. bmc microbiology , : page of http://www.biomedcentral.com/ - / / background natural lactation provides a wide variety of short- and long-term health benefits, being a critical period for mam- mals’ growth and development; in fact, precocious wean- ing is associated with high mortality and morbidity rates, particularly in those species in which igg transfer mainly occurs through maternal milk [ ]. fresh mammalian milk from a given species usually fulfils the nutritional require- ments of the neonates of such species and, also, protects them against infectious diseases. this protective effect is due to the combined action of a variety of protective factors present in colostrum and milk, such as immunoglobulins, immunocompetent cells, fatty acids, polyamines, oligosaccharides and peptides [ - ]. in addition, it has been recently shown that these biological fluids are the vehicle for a variety of commensal, mutualistic or potentially probiotic bacteria [ - ]. the mammalian milk microbiota seems dominated by staphylococci and streptococci [ - ] but it also contains lactic acid bacteria, including enterococci [ , , , ]. enterococci become normal components of the mamma- lian gastro-intestinal tract soon after birth [ , ]. some strains have even been proposed for the production of fer- mented foods or used as human and animal probiotics. however, enterococci are opportunistic pathogens that may cause a range of different infections in animals and humans, including urinary tract infections, mastitis, sepsis, and endocarditis, particularly in hosts with underlying diseases and in neonates [ - ]. virulence, antibiotic re- sistance or gene transfer potential have been considered as strain-specific properties within enterococci [ , ]. recently, genome sequencing of a high number of diverse enterococcus faecium strains has been applied to resolve the lineage responsible for epidemic and/or multidrug- resistant infections from other strains, and to measure the evolutionary distances between groups [ ]. such ap- proach has shown that each evolutionary bifurcation has been accompanied by the acquisition of new metabolic and colonization traits on mobile elements and genome remodeling associated with the insertion and movement of such elements. as a result, diversity within such entero- coccal species, in terms of sequence divergence as well as gene content, may span a range usually associated with speciation [ ]. the use of antimicrobial agents in the modern farm industry has created a reservoir of resistant enterococci in food animals and in food of animal origin [ , ]; these enterococci are likely to contribute resistance and virulence-associated genes to enterococci inhabiting pets and human hosts since such genes appear to spread freely between enterococci from different reservoirs, irrespective of their apparent host association [ , ]. moreover, enterococci are one of the groups of bacteria mainly responsible for the accumulation of biogenic amines (bas) -especially tyramine and putrescine- in fer- mented dairy foods. bas are nitrogenous compounds formed by amino acid decarboxilation, with important physiological functions in mammals, as brain activity, immune response, cell growth and differentiation, etc. however, the consumption of food contaminated with bas provokes several toxic effects, particularly in people who have impaired the detoxification system [ ]. since milk constitute one of the first sources of entero- cocci to the mammalian gut, the objectives of this study were, first, to evaluate the presence of enterococci in milk of healthy hosts belonging to different mammals’ species, including food animal species (sow, ewe), pets (bitches, queens) and women, and, subsequently, to screen them for several genetic and phenotypic traits of clinical signifi- cance among enterococci. methods source and isolation of bacterial isolates milk samples were obtained from porcine (intensive farming), canine, ovine (extensive farming), feline and human hosts (table ) living in the same geographical area and that fulfilled the following criteria: (a) healthy individuals without present or past underlying condi- tions; (b) normal pregnancy; and (c) absence of perinatal problems in the mother and in the infant/offspring. for each species, a total of samples (from different indivi- duals) were collected, with the exception of porcine milk ( samples). the protocol for milk collection from the animals was approved by the ethical committee on animal experimentation of universidad complutense de madrid (spain) and, in addition, all the animals’ owners gave their consent to sampling and analysis. all human volunteers gave written informed consent to sample col- lection and analysis, which were approved by the ethical committee of hospital clínico of madrid (spain). milk samples (~ ml from sows, ewes and women; ~ ml from the remaining species) were collected in sterile tubes by manual expression using sterile gloves. previously, nipples and surrounding skin were cleaned with soap and sterile water, and soaked in chlorhexidine (cristalmina, salvat, barcelona, spain). the first drops (~ ml) were discarded. the milk samples were obtained at day after delivery and kept at °c until delivery to the laboratory, which happened within the first three hours after collection. samples (the original samples but, also, three serial decimal dilutions of each one in peptone water) were plated ( μl) in triplicate onto kanamycin esculin azide (kaa, oxoid, basingstoke, uk) agar plates. paral- lel, and to evaluate potential faecal contamination, the samples were also cultured on violet red bile agar (vrba; difco, detroit, mi) agar plates; all the plates were aerobically incubated at °c for h. in both table enterococcal concentration (cfu/ml) in milk samples of different mammalian and strains isolated from each sample species sample concentration e. faecalis e. faecium e. durans e. hirae e. casseliflavus porcine p . × eca eca b - - - p . × ecb ecb - - - p . × ecc ecc a - ecc - p . × ecd a ecd - - - ecd p . × ece a - - - - p . × - ecf - - - ecf p . × ecg b - - ecg - p . × ech c - - - - ech p . × eci b - - - - eci c canine c . × pkg - - - - c . × pra - - - - c . × - pgah - - - c . × - pkb - - - ovine o . × eoa - - eoa - o . × eob a - - - eob eob feline f . × - - - eh - f . × g - k - - - - human h . × - - c - - h . × - - c - - h . × c - - - - h . × c - - - - h . × - c - - - h . × - - c - - h . × - - c - - total d aisolates ecd and ece are identical; bisolates ecg and eci are identical; cisolates ech and eci are identical. dnumber of different e. faecalis strains. jiménez et al. bmc microbiology , : page of http://www.biomedcentral.com/ - / / growth media, the lower limit of detection was cfu (colony-forming units)/ml. identification of bacterial isolates the potential enterococal isolates (black colonies gro- wing on kaa agar) were observed by optical microscopy to determine their morphology and gram staining. additionally, they were tested for catalase, oxidase and coagulase activities. a single colony of each isolate was suspended in μl of deionized sterile water; μl of the suspension were used as a template for species iden- tification by pcr. first, the gene ddl, which encode d-alanine:d-alanine ligases, was used as target following the protocol previously described by dutka-malen et al. [ ]. the pair of primers e ( ′-atcaagtacagt tagtctt- ′)/e ( ′-acgattcaaagctaactg- ′), allowed to identify e. faecium strains, while the second pair f ( ′-gcaaggcttcttagaga- ′)/ f ( ′-catcgtgtaagctaacttc- ′) is specific for enterococcus faecalis. identification of the rest of isolates was performed by sequencing the pb fragment of the s rdna gene pcr amplified using the primers pbl ( ′-agagtttgatcctggctcag- ′) and mbl ( ′- ggctgctggcacgtagttag- ′) [ ]. the pcr con- ditions were as follows: °c for s, °c for s and °c for s ( cycles) and a final extension at °c for min. the amplicons were purified using the nucleospin® extract ii kit (macherey-nagel, düren, germany) and jiménez et al. bmc microbiology , : page of http://www.biomedcentral.com/ - / / sequenced at the genomics unit of the universidad complutense de madrid, spain. the resulting sequences were used to search sequences deposited in the embl database using blast algorithm and the identity of the isolates was determined on the basis of the highest scores (> %). genetic profiling of the enterococcal isolates initially, the enterococcal isolates were typed by random amplification of polymorphic dna (rapd) in order to avoid duplication of isolates from a same host. rapd pro- files were obtained using primer opl ( ′-acgcagg cac- ′), as described by ruíz-barba et al. [ ]. later, a representative of each rapd profile found in each host was submitted to pfge genotyping [ ]; for this purpose, chromosomal dna was digested with the endonuclease smai (new england biolabs, ipswich, ma) at °c for h. then, electrophoresis was carried out in a chef dr-iii apparatus (bio-rad) for h at °c at v/cm with pulses from to s. a standard pattern (lamda ladder pfg marker, new england biolabs) was included in the gels to compare the digitally normalized pfge profiles. computer-assisted analysis was performed with the phoretix d pro software (nonlinear usa, inc., durham, nc). multilocus sequence typing (mlst) molecular typing of e. faecalis and e. faecium isolates was performed by mlst. internal fragments of seven house- keeping genes of e. faecalis (gdh, gyd, psts, gki, aroe, xpt and yiql) and e. faecium (atpa, ddl, gdh, purk, gyd, psts, and adk) were amplified and sequenced. the sequences obtained were analyzed and compared with those included in the website database (http://efaecalis.mlst.net/), and a specific sequence type (st) and clonal complex (cc) was assigned [ , ]. screening for virulence determinants, hemolysis and gelatinase activity a multiplex pcr method [ ] was used to detect the pre- sence of virulence determinants encoding sex pheromones (ccf, cpd, cad, cob), adhesins (efaafs, efaafm), and products involved in aggregation (agg ), biosynthesis of an extracel- lular metalloendopeptidase (gele), biosynthesis of cytolysin (cyla) and immune evasion (espfs). the primers couples used to detect all the genes cited above were those pro- posed by eaton and gasson [ ]. the presence of the hyl gene (encoding a glycosyl hydrolase) and is (potential marker of hospital associated e. faecium strains) was also checked by pcr among e. faecium strains as described previously [ , ]. control strains used in pcr experiments were e. faecalis strains f (efaafs + gele + agg + cylmba + esp + cpd + cob + ccf + cad+), p (efaafs + gele + agg + cyla + esp + cpd + cob + ccf + cad+) and p (efaafs + gele + agg + cyla + cpd + cob + ccf + cad+), e. fae- cium p (efaafm + esp+) and e. faecium c (hyl). pcr conditions were as follows: initial denaturation at °c for min; cycles of denaturation at °c for min, an- nealing at °c for s and elongation at °c for . min, and a final extension at °c for min. haemolysin activity was evaluated on columbia blood agar (oxoid) containing % defibrinised horse blood. single colonies were streaked onto plates and incubated at °c for h. zones of clearing around colonies indi- cated haemolysin production. production of gelatinase was determined on tryptic soy agar plates (oxoid) supplemented with % gelatin. plates streaked with the strains were incubated at °c for h, and cooled at °c for h. a clear halo around colonies was considered to be positive indication of gela- tinase activity. capacity to produce biogenic amines the presence of the tyrosine decarboxylase gene (tdca), histidine decarboxylase gene (hdca) and agmatine deimi- nase cluster (agddi) was checked by specific pcr using the primers pairs p -for and p -rev [ ], jv hc and jv hc [ ], and ptc and agddr [ ], respectively. pcr conditions were those described by the respective authors. total dna, obtained as described by [ ], was used as template. e. faecalis v , which produce pu- trescine and tyramine, and lactobacillus buchneri b , which produce histamine, were used as positive controls. the enterococcal strains were grown for h in m broth supplemented with mm tyrosine (m t), mm of histidine (m h) or mm agmatine (m a) for the detection of tyramine, histamine and putrescine production, respectively. the supernatants were filtered through a . μm pore diameter membrane, derivatyzed and analysed by thin layer chromatography (tlc) fol- lowing the conditions described by garcía-moruno et al. [ ]. susceptibility to antibiotics minimum inhibitory concentrations (mics) of anti- microbial agents (ampicillin, gentamicin, streptomycin, quinupristin/dalfopristin, kanamycin, erythromycin, clin- damycin, oxytetracycline, chloramphenicol, tigecycline, linezolid and vancomycin) were determined by the e-test (ab biodisk, solna, sweden) following the instructions of the manufacturer. the e-test strips contained pre- formed antimicrobial gradients in the test range from . to μg/ml for tetracycline, erythromycin, genta- micin, kanamycin, clindamycin, ampicillin, chloramphe- nicol, tigecycline, linezolid and vancomycin, from . to . μg/ml for streptomycin, and from . to μg/ml for quinupristin-dalfopristin. results from the different antibiotic susceptibility tests were interpreted according to http://efaecalis.mlst.net/ jiménez et al. bmc microbiology , : page of http://www.biomedcentral.com/ - / / the cut-off values and clinical breakpoints proposed by the european committee on antimicrobial susceptibility testing (eucast) while the breakpoints of the clinical and laboratory standards institute (clsi) [ ] were used for those antibiotics not included in eucast. screening for van genes pcr reactions for vana and vanb genes were performed as described previously [ , ]. oligonucleotides used as primers for the amplification of the bp fragment of the vana gene were vana ( ′-gggaaaacgacaatt gc- ′) and vana ( ′-gtacaatgcggccgtta- ′), while those used for amplification of the , bp frag- ment of vanb were vanbfor ( ′-gtgctgcgagatac cacaga- ′) and vanbrev ( ′-cgaacaccatgcaa catttc′). e. faecium bm (resistant to vancomycin, vana+) and e. faecalis v (resistant to vancomycin, vanb+) were used as positive controls. pcr assays for the detection of vand, vane and vang genes in the enterococ- cal isolates was performed as previously described [ - ]. results isolation, identification and profiling of the enterococcal isolates colonies were obtained from all the porcine and out of human samples when inoculated onto kaa plates. in contrast, colonies could be isolated from % of the canine samples and only from % of the feline and ovine ones (table ). when bacterial growth was detected, the kaa counts ranged from . × to . × cfu/ml (table ). no colonies were detected on vrba plates, which confirmed the hygienic collection of the milk samples. five isolates showing a coccoid shape and catalase- negative and oxidase-negative reactions were randomly se- lected from each sample in which colonies were observed. the isolates were identified to the species level as e. faecalis, e. faecium, enterococcus hirae, enterococcus casseliflavus or enterococcus durans (table ). among them, e. faecalis isolates were the most abundant and, in addition, this was the only enterococcal species present in samples from all the mammalians’ species included in this study. e. faecium was found in canine, swine and human milk samples but not in the ovine or feline ones. e. hirae was present in ovine, swine and feline milk samples. finally, e. casseliflavus and e. durans could be isolated only from ovine and human milk samples, respectively. there was a maximum of three different enterococcal spe- cies in a same sample (porcine sample no. p : e. faecalis, e. faecium and e. hirae), while only one enterococcal spe- cies was detected in each of the canine, feline and human samples (table ). rapd and pfge profiling revealed that, for each en- terococcal species, there was a single strain per sample, with the exception of four porcine and one ovine sam- ples (table ). pfge genotyping also revealed that three e. faecalis strains were shared by different porcine sam- ples (table ). based on their different pfge profiles, enterococcal isolates from milk of the mammalian species were selected subsequently, for further characterization. mlst analysis of the e. faecalis and e. faecium strains mlst analysis of the e. faecalis strains revealed the occurrence of different sts, including one novel st (st ) from a canine sample (table ). the most frequent clones were st , which was found among strains (all of them from porcine origin), and st , which was detected among strains (one porcine strain and the two ovine ones). clone st was shared by two porcine strains while clone st was shared by one por- cine and the feline strain. mlst analysis was also performed with the e. faecium strains recovered from the different origins. eight different sts were detected among e. faecium strains, five of them known (st , st , st , st , st and st ), and two new sts that presented new allelic combinations (st and st , of porcine origin). for one of the e. faecium strains it was not possible to determine the st (table ). occurrence of putative virulence genes none of the potential virulence determinants (cad, ccf, cob, cpd, efaafs, efaafm, agg , gele, cyla, espfs) tested in this study could be detected in any of the e. durans, e. hirae or e. casseliflavus strains. the e. faecium strains only harboured the efaafm gene, while all the e. faecalis strains possessed some potential virulence determinants (table ). sex pheromones determinants (ccf, cpd, cad, cob) and the adhesin gene efaafs were detected in all e. faecalis strains, whereas the rest of the genes were variable on the strains. the cyla gene was not detected in any of the e. faecalis strains isolated from human, canine and feline milk. all e. faecium strains were nega- tive for the hyl gene and the is element. there was a good correlation between presence of gele gene and gelatinase activity and, also, between presence of cyla gene and hemolytic activity (table ). production of biogenic amines all the tested strains were positive for the tdc gene and were able to produce tyramine (table ). in contrast, none of them harbored the hdc gene and histamine was accordingly not detected in the cultures (table ). all the e. faecalis strains contained the genes involved in putrescine biosynthesis and produced putrescine in broth cultures, while the results were negative for the two e. casseliflavus strains. the ability to produce pu- trescine was variable in the other enterococcal species table mlst typing, presence of virulence determinants and hemolytic and gelatinase activities among the e. faecalis strains origin strain sta cad ccf cob cpd efaafs espfs agg gele cyla gelatinase hemolysis porcine eca st + + + + + + - + - + - ecb st + + + + + + + + + + + ecc st + + + + + + + + + + + ecd st + + + + + + + - + - + ece st + + + + + + + + - + - ech st + + + + + + + - + - + eci st + + + + + + + + - + - eci st + + + + + + + + + + + canine pkg st + + + + + - - + - + - pra st + + + + + - - + - + - ovine eoa st + + + + + + + + + + + eob a st + + + + + + + + + + + feline g - k st + + + + + - + + - - - human c st + + + + + + - + - + - c st + + + + + + + + - + - total percentage ast obtained by mlst typing. jiménez et al. bmc microbiology , : page of http://www.biomedcentral.com/ - / / (e. faecium, e. durans and e. hirae), having found both producing and non-producing strains (table ). there were only two strains -both belonging to e. hirae- in which the gene (agddi) was present, but the production of the corresponding biogenic amine (putrescine) was not detected. antibiotic susceptibility and screening for van genes all the enterococcal strains showed susceptibility to tige- cycline, linezolid and vancomycin, and exhibited high table mlst typing of the e. faecium strains a origin strain atpa ddl gdh porcine eca b ecb ecc a ecd ecf ecf - canine pgah pkb human c ast obtained by mlst typing. bnew st types. cnt: non-typeable. resistance to kanamycin. their susceptibility to the rest of the antimicrobials included in this study is shown in table . most e. faecalis, e. faecium and e. hirae strains were resistant to tetracycline and chloramphenicol. all e. faecalis strains showed susceptibility to ampicillin whereas an important number of strains showed resis- tance to the rest of antibiotics tested. the strains identi- fied as e. faecium and e. hirae did not present high-level resistance to gentamicin but exhibited high resistance rate towards the rest of antibiotics. globally, e. casseliflavus llele purk gyd psta adk sta st b st (cc ) st (singleton) st st b - - ntc st st (singleton) st table detection of gene determinants for the biosynthesis of biogenic amines and production among the enterococcal isolates putrescine origin species strain tyraminea histamineb gene cluster production porcine e. faecalis eca + - + + ecb + - + + ecc + - + + ecd + - + + ece + - + + ech + - + + eci + - + + eci + - + + canine pkg + - + + pra + - + + ovine eoa + - + + eob a + - + + feline g - k + - + + human c + - + + c + - + + porcine e. faecium eca b + - + + ecb + - + + ecc a + - - - ecd + - - - ecf + - - - ecf + - - - canine pgah + - - - pkb + - - - human c + - - - human e. durans c + - + + c + - + + c + - - - c + - - - porcine e. hirae ecc + - - - ecg + - + - ovine eoa + - + + feline eh + - + - ovine e. casseliflavus eob + - - - eob + - - - adetection of the tdca gene and production of tyramine in broth cultures; bdetection of the hdca gene and production of histamine in broth cultures. jiménez et al. bmc microbiology , : page of http://www.biomedcentral.com/ - / / was the species with a highest susceptibility to the anti- biotics tested followed by e. durans. in relation with the milk origin, enterococcus strains iso- lated from porcine samples showed the widest spectrum of antibiotic resistance and all the e. faecalis strains from such origin displayed resistance to, at least, six of the ten antibiotics tested (table ). finally, van genes could not detected in any enterococcus strains studied in this work. discussion enterococci are common inhabitants of the gastrointes- tinal tract of humans and a wide variety of animals. in this study, the presence of enterococci in milk samples table resistance (+) or susceptibility (−) of the enterococcal isolates against clinically-relevant antibioticsa antibioticb origin species strain am gm sm em cl qd tc cm porcine e. faecalis eca - - + + - + + + ecb - - + - + + + + ecc - + + + - + + + ecd - + + + - + + + ece - - + + + + + + ech - + + + - + + + eci - - + + + + + + eci - + + + - + + + canine pkg - - + - - - - + pra - - + - + + - + ovine eoa - - + - + + + + eob a - - + - + + + + feline g - k - - + - + + - + human c - + + - - + + + c - + + - - + + + porcine e. faecium eca b + - + + - - + + ecb - - + - + + + + ecc a + - + + - + + + ecd - - + - + - + + ecf + - + + - + + + ecf - - + + - + + + canine pgah - - + + - - + + pkb - - + - - - + - human c - - - - - + - + human e. durans c - - - - - - - - c - - + - - + - + c - - - - - - - - c + + - + + - - + porcine e. hirae ecc + - - - - - + + ecg + - - + - - + + ovine eoa + - - + + + + + feline eh - - - - - + + + ovine e. casseliflavus eob - - - - - + - + eob - - - - - - - - aall the enterococcal strains showed susceptibility to tigecycline, linezolid and vancomycin, and exhibited high resistance to kanamycin. bam: ampicillin; gm: gentamicin; sm: streptomycin; em: erythromycin; cl: clindamycin; qd: quinupristin/dalfopristin; tc: tetracycline; cm: chloramphenicol. jiménez et al. bmc microbiology , : page of http://www.biomedcentral.com/ - / / obtained from different mammalian species was investi- gated. enterococci were isolated from all the porcine milk samples and from out of human samples, while they were less frequent in the canine, ovine and feline samples. all the strains were identified as e. faecalis, e. faecium, e. hirae, e. casseliflavus or e. durans. the number of different species in each milk sample was low, ranging from to . similarly, the number of strains was also low and, in fact, each of the canine and human samples contained only one enterococcal strain. pfge profiling revealed that only some of the porcine samples shared a given strain, which indicates that spread is facilitated in intensive farming settings. globally, the results showed that milk from different mammalian species may contain enterococci and, therefore, may constitute a natural source of such microorganisms jiménez et al. bmc microbiology , : page of http://www.biomedcentral.com/ - / / for the infant/offspring. the kaa counts (< . × cfu/ml) were similar to those reported for hygienic- ally-obtained human milk on mrs plates, a medium also suitable for isolation of enterococci [ , ]. as previously reported for lactobacilli in porcine and canine milk [ , ], the enterococcal pattern observed in the milk samples seems to be restricted to a low number of species and strains, and also to have a high degree of individual vari- ability. to our knowledge, this is the first description of enterococci isolated from fresh milk of healthy canine, feline and porcine hosts. some e. faecium and e. faecalis strains from colostrum and milk of healthy women have been described previously [ - , ]. in relation to ewe’s milk, a pilot study showed that enterococci were present in excess of × cfu/ml in % of the samples of unpasteurized milk from goats and ewes in england and wales [ ]. other study focused on the identification of indigenous lactic acid bacteria in four samples of fresh ewe’s raw milk and four samples of derived artisanal cheese from argentina revealed that % and %, re- spectively, of the isolates obtained belonged to the genus enterococcus [ ]. the e. faecalis strains analyzed in this work possessed some potential virulence determinants, including all the sex pheromone determinants, but the gene encoding cyto- lysin (cyla) could only be detected in strains. the results for the rest of the enterococcal genes were variable de- pending on the strains. on the other hand, only the efaafm gene could be detected among the e. faecium isolates. these results are similar to those obtained in previous studies with enterococcal strains isolated from human colostrum and milk [ - ]. the role of adhesin efaafm in virulence has not yet been demonstrated, in contrast to the esp surface protein. in the absence of other virulence determinants, presence of efaafm seems to have no value as a risk indicator since this gene was also found in % of starter e. faecium strains with a long record of safe use in food [ ]. the results also agree with those obtained in other studies focused on foodborne enterococci in the sense that e. faecalis strains harbor multiple virulence de- terminants with a much higher incidence than in other enterococcal species [ ]. a great diversity of e. faecalis and e. faecium clones were detected circulating in the milk environments of dif- ferent origins including three that have not been described previously. some of the clones were common in different animal species as it was the case of e. faecalis-st , which was detected among porcine and feline isolates, or e. faecalis-st among porcine and ovine ones. the se- quence types found among the human isolates were only observed in milk samples of this origin. it is of interest to remark that two of the sts detected among e. faecalis strains of porcine or feline origin are included in clonal complexes (cc and cc ) that are frequently detected in human infections in europe [ ]. in addition, it should be highlighted that the hospital-associated lineages of e. faecalis (st and st ) and e. faecium (st ), identi- fied in milk of porcine origin in this study, have also been detected in the pig farm environment in a recent study [ ]. several food and human isolates belonging to different species of the genus enterococcus had been previously des- cribed as ba producers [ ]. in fact, tyramine production and a variable ability to produce putrescine is a very com- mon finding among enterococci [ ]. however, to our knowledge, no histamine-producing enterococci strains have been described so far and have not been found in this work, either. although it has been generally assumed that the ability to produce bas is a strain-dependent charac- teristic, it has been recently described that tyramine bio- synthesis is a species-level characteristic in e. faecalis, e. faecium and e. durans [ ]. the same work suggests that putrescine biosynthesis by the agmatine deiminase pathway is also a species-level characteristic in e. faecalis. since all the strains tested in this study showed ability to synthesize tyramine, and all the e. faecalis strains produced putrescine (table ), the results obtained are consistent with the fact that they are species-level charac- teristics. moreover, all e. hirae and e. casseliflavus strains were also tyramine producers. although further work is required, tyramine-production could also be a species- level characteristic of these species. in any case, the ability to produce tyramine is widespread in the genus entero- coccus. with respect to putrescine, the results are more variable. while all the e. faecalis were putrescine pro- ducers, only some e. faecium and e. hirae strains and none e. casseliflavus produced it. genomic studies on e. faecium suggest that such ability could have been acquired through horizontal gene transfer [ ]. the presence of ba-producing enterococci in human milk evidences the need to research if they can produce bas in the milk, or subsequently in the gastrointestinal tract, and therefore be considered a health risk. in fact, it has been shown that tyramine-producing e. durans strain isolated from cheese is able to produce tyramine under conditions simulating transit through the gastrointestinal tract [ ]. the milk used for the production of fermented dairy products (cows, ewes and goats) deserves also further research, since the presence of ba-producing enterococci may be responsible for the accumulation of toxic bas concentrations in foods [ ]. the e-test was used to determine the resistance pattern of the enterococcal strains against clinically-relevant antimicrobials. the antibiotic resistance spectrum was wider among the e. hirae, e. faecium and, particularly, e. faecalis strains. in relation to the source of the samples, those isolated from porcine milk seemed to be of parti- cular concern. antibiotic resistance is an important factor jiménez et al. bmc microbiology , : page of http://www.biomedcentral.com/ - / / for the safety evaluation of enterococci because it can be acquired and/or transferred to other bacteria by gene transfer. the major differences in the rate of resistant enterococci in porcine herds among different countries are most probably due to differences in the usage of anti- microbial agents [ ]. vancomycin-resistant enterococci (vre) initially emerged as a relevant public health threat due to the use in the past of the glycopeptide avoparcin as growth promoter in animal feed. once avoparcin was banned, the persistence of vre was associated to co-selection of van genes and genes conferring resistance to other antibiotics (such as erythromycin) due to the intensive use of other antibiotics, such as tylosin [ ]. after the ban of antibiotics as growth promoters in all european union countries (july ), aarestrup [ ] speculated that occurrence of vre among pigs would decrease in the following years. in this study, none of the strains was resistant to vancomycin, an antibiotic commonly used for infections caused by multidrug-resistant bacteria, although most of the e. faecalis strains isolated from porcine milk were resis- tant to erythromycin. all our e. faecalis, e. faecium and e. hirae strains of food animals (porcine and ovine) were resistant to tetra- cycline, which has been widely used for therapy in food animals in many countries, including spain; this usage also could have contributed to the successful persistence of tet genes. a comparison between antibiotic resistance among enterococci isolated from pigs in sweden, denmark and spain showed that tet (l) and tet (s) genes were more fre- quently found among isolates from spain [ ]. globally, frequent occurrences of antibiotic-resistant en- terococci have been observed among food animals, and it has been suggested that these animals may be a reservoir of resistant enterococci and resistance genes capable of transferring to humans through the food chain [ ]. anti- microbial resistance genes appear to spread freely between enterococci from different reservoirs, irrespective of their apparent host association [ ]. therefore, continuous surveillance of antimicrobial re- sistance in enterococci from humans, animals and foods of animal origin is essential to detect emerging resistance and new infections [ ]. as an example, an outbreak of infective mastitis due to e. faecalis was recently reported in an intensive sheep farm in italy. forty-five out of the e. faecalis isolates showed the same multi-drug resistance pattern and had a clonal origin. this was the first reported case of ewe’s mastitis caused by e. faecalis [ ]. such strains could arrive to the human food chain through the consumption of cheeses elaborated with raw ewe’s milk. pets can also be a source of enterococci and enterococ- cal resistance genes to humans and other animals and vice versa. recent results suggest that direct and frequent con- tact with dogs may significantly shape the composition of our microbial communities [ ]. the widespread occur- rence of ampicillin-resistant clones in dogs is worrying since these animals may spread such clones among humans due to the close relationships that are usually established between dogs and humans [ , ]. due to this risk of zoonotic transfer, it has been suggested that pets used to promote the recovery of patients (pet therapy) may pose a risk to such patients if the dogs are not previously screened for the presence of such enterococcal clones [ ]. similarly, it has been reported that dogs leaving the vete- rinary intensive care unit (icu) carry a very large multi- drug resistant enterococcal population with capacity for horizontal gene transfer [ ]. as a consequence, the authors recommended restriction of close physical contact between pets released from icus and their owners to avoid potential health risks [ ]. conclusions milk from different mammalian species may contain en- terococci. the wide distribution of virulence genes and/or antibiotic resistance among e. faecalis and e. faecium strains isolated from such source indicates that they can constitute a reservoir of such traits for the infant/offspring gut and, as a consequence, a potential risk to animal and human health. in fact, some sts detected among e. faecalis strains isolated from porcine or feline samples in this study belong to clonal complexes (cc and cc ) frequently associated to hospital infections in europe. competing interests the authors declare that they have no competing interests. authors’ contributions ej, ic, amb, vm and, lf isolated, identified and characterized the strains. vl and mf performed the ba analysis. ml and ct carried the mlst analysis. ct, maa and jmr designed experimental procedures. ej, jmr, maa and ct drafted the manuscript. all authors read, revised and approved the manuscript. acknowledgements this study was supported by the csd - (fun-c-food, consolider-ingenio ), agl - , agl - and saf - projects from the ministerio de economía y competitividad (spain). author details departamento de nutrición, bromatología y tecnología de los alimentos, universidad complutense de madrid, ciudad universitaria, avda. puerta de hierro, madrid s/n. , spain. instituto de productos lácteos de asturias (ipla-csic), paseo río linares s/n , villaviciosa, spain. departamento de biotecnología de alimentos, instituto de la grasa-csic, sevilla , spain. 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hendrickx ap, dawson s, willems rj, guardabassi l: dogs are a reservoir of ampicillin-resistant enterococcus faecium lineages associated with human infections. appl environ microbiol , : – . . tremblay cl, charlebois a, masson l, archambault m: characterization of hospital-associated lineages of ampicillin-resistant enterococcus faecium from clinical cases in dogs and humans. front microbiol , : . . ghosh a, dowd se, zurek l: dogs leaving the icu carry a very large multi-drug resistant enterococcal population with capacity for biofilm formation and horizontal gene transfer. plos one , :e . doi: . / - - - cite this article as: jiménez et al.: antibiotic resistance, virulence determinants and production of biogenic amines among enterococci from ovine, feline, canine, porcine and human milk. bmc microbiology : . submit your next manuscript to biomed central and take full advantage of: • convenient online submission • thorough peer review • no space constraints or color figure charges • immediate publication on acceptance • inclusion in pubmed, cas, scopus and google scholar • research which is freely available for redistribution submit your manuscript at www.biomedcentral.com/submit 	abstract 	background 	results 	conclusions 	background 	methods 	source and isolation of bacterial isolates 	identification of bacterial isolates 	genetic profiling of the enterococcal isolates 	multilocus sequence typing (mlst) 	screening for virulence determinants, hemolysis and gelatinase activity 	capacity to produce biogenic amines 	susceptibility to antibiotics 	screening for van genes 	results 	isolation, identification and profiling of the enterococcal isolates 	mlst analysis of the e. faecalis and e. faecium strains 	occurrence of putative virulence genes 	production of biogenic amines 	antibiotic susceptibility and screening for van genes 	discussion 	conclusions 	competing interests 	authors’ contributions 	acknowledgements 	author details 	references << /ascii encodepages 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/usedocumentbleed false >> ] >> setdistillerparams << /hwresolution [ ] /pagesize [ . . ] >> setpagedevice ajj the facts for your immunization program immunizing healthcare workers: a practical approach edited by gregory a. poland, md; william schaffner, md; clna pugllese, rn, ms pp, hard cover, , isbn - - - , order* , $ . ; both textbooks are an official publication of the society of healthcare epidemiology (shea). immunizing healthcare workers: a practical approach is the first complete resource for dealing with the immunization of healthcare workers. you can find all of the latest information on successfully and safely implementing or updating your immu- nization program in this landmark book. inside you will find that for each of the vaccine-pre- ventable diseases among workers, there is a discus- sion of disease risks in the healthcare setting, vaccine recommendations, special administration strategies, safety issues, discussion of unresolved issues, and answers to commonly asked questions. there are also case studies of sample programs in specific settings. this phenomenal book contains the latest recom mendations from the us public health service advisory committees, healthcare infection control practices advisory committee (hicpac), and the advisory committee on immunization practices (acip). read how the experts overcame obstacles while setting up immunization programs in their healthcare settings. with over contributors to chapters, immunizing healthcare workers: a practical approach is an essential source for the latest information necessary to implement an effective immunization program. s o m e case s t u d y topics: nunizing providers and staff in physicians' offices eination of healthcare workers in long-term care facilities r the elderly nunization of affiliating students and contract home dthcare workers nunization strategies for home healthcare personnel immunization of workers with altered host defenses vaccinating unimmunized and partially immunized workers assessing immunity and exposures: using a computerized surveillance system managing information in an immunization program the internet: a quick guide to vaccine & immunization information [ k order form l me copies of immunizing healthcare workers: a practical approach ) at $ . each. me copies of a practical handbook for hospital epidemiologists i ) at $ . each. tents add % sales tax $ handling $ . total $ state: .zip: fax: penclosed (payable to slack incorporated) _signature_ tofc^fajj^e^sftfggjn^jgggyjjgjyjgg^ mnciaaaq abo available a practical handbook for hospital epidemiologists edited by: loreen a. herwaldt, md and co-edited by michael d. decker, md, mph pp, soft cover, , isbn - - - , order* , $ . a practical handbook for hospital epidemiologists is th< most complete source for practical advice on hospital epidemiol- ogy. it is intended to be a pragmatic guide that will assist botl beginning and experienced practitioners in establishing and oper- ating a successful hospital epidemiology program. this hand- book will supplement the various scientific references alreadj available for this field and will help hospital epidemiologist: improve their practices. ! mail order form to: slack incorporated, professional book division, grove road, thorofare, nj - call: ( ) - or ( ) - fax: ( ) - e-mail: orders@slackinc.com world wide web site: http://www.slackinc.com \ downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. mailto:orders@slackinc.com http://www.slackinc.com https://www.cambridge.org/core th annual scientific meeting royal york hotel toronto, canada april — , workshops symposia antibiotic management in an era of increasing resistance infection control in a non-hospital setting: long-term care, outpatient services outbreak investigation: the problem solving approach an evidence-based review of isolation methods plenary sessions cost-cutting efforts: do they cut corners as well? . reuse 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friends, cut costs, and impress your hospital administration for additional information regarding the shea annual meeting, please contact: shea meetings department mantua road mt. roval. nj telephone: ( ) - . exl. fax: ( ) - email: sheamig@talley.com website: www.shca-online.oru downloaded from https://www.cambridge.org/core. apr at : : , subject to the cambridge core terms of use. mailto:sheamig@talley.com http://www.shca-online.oru https://www.cambridge.org/core biomed centralbmc family practice ss open acceresearch article the use of cam and conventional treatments among primary care consulters with chronic musculoskeletal pain majid artus*, peter croft and martyn lewis address: primary care musculoskeletal research centre, keele university, stoke on trent, staffordshire, st bg, uk email: majid artus* - m.artus@cphc.keele.ac.uk; peter croft - p.r.croft@cphc.keele.ac.uk; martyn lewis - a.m.lewis@cphc.keele.ac.uk * corresponding author abstract background: chronic musculoskeletal pain is the single most cited reason for use of complementary and alternative medicine (cam). primary care is the most frequent conventional medical service used by patients with pain in the uk. we are unaware, however, of a direct evidence of the extent of cam use by primary care patients, and how successful they perceive it to be. methods: aims and objectives: to determine cam use among patients with chronic musculoskeletal pain who have consulted about their pain in primary care. study design: face-to-face interview-based survey. setting: three general practices in north staffordshire. participants: respondents to a population pain survey who had reported having musculoskeletal pain in the survey and who had consulted about their pain in primary care in the previous months as well as consenting to further research and agreeing to an interview. information was gathered about their pain and the use of all treatments for pain, including cam, in the previous year. results: interviews were completed. participants ( %) had used at least one cam treatment for pain in the previous year. % were current users of cam. the ratio of over-the-counter cam use to care from a cam provider was : . participants ( %) had used conventional treatment. ( %) were using a combination of cam and conventional treatment. glucosamine and fish oil were the most commonly used cam treatments ( %, % respectively). most cam treatments were scored on average as being helpful, and users indicated that they intended to use again % of the cam treatments they had already used. conclusion: we provide direct evidence that most primary care consulters with chronic musculoskeletal pain have used cam in the previous year, usually in combination with conventional treatments. the high prevalence and wide range of users experiences of benefit and harm from cam strengthen the argument for more research into this type of medicine to quantify benefit and assess safety. the observation that most users of conventional medicine also used cam suggests a continuing need for more investigation of effective pain management in primary care. published: may bmc family practice , : doi: . / - - - received: october accepted: may this article is available from: http://www.biomedcentral.com/ - / / © artus et al; licensee biomed central ltd. this is an open access article distributed under the terms of the creative commons attribution license (http://creativecommons.org/licenses/by/ . ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. page of (page number not for citation purposes) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids= http://www.biomedcentral.com/ - / / http://creativecommons.org/licenses/by/ . http://www.biomedcentral.com/ http://www.biomedcentral.com/info/about/charter/ bmc family practice , : http://www.biomedcentral.com/ - / / background surveys have suggested that use of complementary and alternative medicines (cam) is high and increasing worldwide [ ]. longitudinal studies in the uk between [ ] and [ ], [ ] and [ ] and between [ ] and [ ] and in the usa between [ ] and [ ] have confirmed the trend. cam is most commonly used for chronic pain and in particular musculoskeletal pain [ ] and is often used in combina- tion with conventional therapies [ ]. gps are the con- ventional medical practitioners most frequently consulted for chronic pain in the uk [ ]. a number of surveys have been conducted in the uk to explore cam use. some of these were general population surveys [ , , - ], surveys among patients with defini- tive rheumatologic diagnoses attending hospital clinics [ - ], or surveys of healthcare professionals exploring their patients' use of cam and access to it [ - , , , , ]. in primary care in the uk, surveys targeted healthcare pro- fessionals rather than patients. [ , ] we are not aware of surveys conducted in the uk that have directly explored cam use among primary care patients who suffer from chronic musculoskeletal pain. evidence suggests that users do not necessarily access cam through primary care and also they are often reluctant to inform their doctors of their use of these treatments [ , ]. figures on access to cam through primary care and on health professionals' provision of cam, therefore, might have under-repre- sented actual cam use among primary care patients. we are not aware of previous surveys of primary care patients that have enquired about the perceived helpful- ness of treatments from the patients' perspectives. this is important for understanding healthcare seeking behav- iour among chronic pain sufferers, for informing effective pain management in primary care and because of poten- tial safety issues related to cam use. we wanted to address these issues with particular focus on musculoskeletal pain sufferers who are using primary care in the uk. we have therefore investigated the pattern of cam use in a sample of chronic musculoskeletal pain patients who were consulting primary care in the uk. our hypothesis was that this group of patients would have a higher prevalence of cam use than general population samples or pain sufferers generally. this was based on the idea that this group will have selectively more severe prob- lems than the general population because they have sought health care and because chronic musculoskeletal pain is often unresponsive to conventional primary care treatments methods setting and study population the population consisted of adults, aged years and older, registered with three general practices in the north staffordshire general practice research network. the sample was drawn from responders to previous postal health surveys [ , ] conducted in the network. they had agreed to further contact and to use of their medical records for specific research purposes. approval for this specific study was obtained from the north staffordshire ethics committee. we first identified all patients who had reported pain in the surveys and who had consulted their general practitioners during a defined -month period with any condition or syndrome of chronic musculoskel- etal pain as identified from their computerised medical records. the quality of the coded consultation data in the network practices is audited regularly and this has been reported previously in the literature [ ]. the main inclu- sion criterion was a record of a consultation for muscu- loskeletal pain during the months prior to the interview. we excluded patients with pain caused by or associated with malignancy (primary or secondary), vis- ceral (gynaecological or general surgical), vascular, neuro- pathic conditions or infections. we also excluded individuals who were known by their gps to have impaired cognitive function. language was not an exclud- ing criterion. gps reviewed the final list to further exclude patients on the basis of terminal illness or inappropriate- ness for social reasons. sample size anticipating the prevalence of cam use on the basis of previous surveys to be at least %- %, we calculated that patients would need to be recruited in order to detect at least % difference in prevalence between dif- ferent socio-demographic groups with % power. given the need for an in-depth interview, we predicted a response rate of – %. the total number of potential participants identified was . we invited all of them to participate in order to generate our calculated sample size. design the methods used were a combination of a face-to-face structured interview, a self-completed questionnaire and data collection from medical records. the interview ques- tionnaire consisted of three sections. section a was about the timing of pain and its location. section b was about treatments used for pain control and consisted of eight questions. section c included questions about socio- demographic characteristics. for social and occupational classifications we used the office for national statistics socio-economic classification (ns – sec) [ ]. page of (page number not for citation purposes) bmc family practice , : http://www.biomedcentral.com/ - / / section b started with an open question about treatments used for pain. a list of treatment names was not used at this stage and it was clearly explained to participants that we wanted to know of anything they had used or anything done to help them with their pain. after answers were obtained to that question, a list of treatments was then introduced (table ) and participants were asked to answer the same question, again, this time with the aid of the list. the list included all types of treatments (conven- tional and items of self-care as well as cam) which could be used for pain, regardless of type, classification, defini- tion, local availability, prevalence of use or effectiveness. boxplot summary of perceived helpfulness scores on the vas for the most commonly used cam treatmentsfigure boxplot summary of perceived helpfulness scores on the vas for the most commonly used cam treatments. values repre- sented are number of users and -number summary (median, th and th percentiles and range) and outlier observations (data that lie outside the interval: median ± . × mid-spread). page of (page number not for citation purposes) bmc family practice , : http://www.biomedcentral.com/ - / / the interviewer proceeded by asking detailed questions as follows about each of the treatments used, with partici- pants being asked to choose from lists of responses. we asked whether practitioners had been involved in the treatment; answers classified to 'no', 'yes throughout' or 'yes at some stage only'. participants were also asked detailed questions, where applicable, about how they were introduced to the treatment; reasons for using it, and reasons for stopping it. participants were also asked how helpful they had found the treatment, scored on a numeric visual analogue scale (vas) ranging from (+ ) 'very helpful' to (- ) 'very harmful', with zero defining 'not helpful and not harmful'. current use of a treatment was defined as 'use during the week leading to the inter- view'. those who had stopped a treatment were asked about the reasons for stopping. finally participants were asked about their intention for future use of each current or previously used treatment. in the list of options for each answer, there was an 'other' option which allowed participants to freely state his or her answer if different from the listed ones. at the end of the interview the chronic pain grade (cpg) questionnaire [ ] was self-completed by participants. this seven item self-complete instrument provides a score of severity, enabling chronic pain patients to be classified into one of four categories which combine persistence (duration), intensity and disability:- grade i, low disabil- ity-low intensity; grade ii, low disability-high intensity; grade iii, high disability-moderately limiting; and grade iv, high disability-severely limiting. its use has been vali- dated in the usa and the uk [ ]. all interviews were conducted between april and july by one researcher (ma). the format was piloted with five patients from a general practice outside the study. random interviews from the main study were videoed and studied by an independent qualitative researcher at our centre, applying criteria for quality developed by de vaus [ ]. cam and conventional treatments our identification of treatments as 'cam' and 'conven- tional' was based on our literature review, and on the views of clinical and non-clinical researchers in our centre, whose main topic of research is musculoskeletal pain. we surveyed the latter about how they would clas- sify the list of treatments used in our main survey. although this was not a formal delphi procedure, the aim table : a list of treatments addressed in the study. treatments included in interview list cam conventional additional cam treatments reported by participants .aromatherapy .muscle energy techniques .ultrasound .exercises .homeopathy .therapeutic touch .vitamins .heat therapy .magnets .alexander technique .joint injections .heat cream .copper bracelets .massage therapy .occupational therapy .biocomfort .evening primrose .phytodolor .operations .dog oil .reflexology .osteopathic manipulation .podiatry .glyco-nutrient .naturopathy .electrotherapy .psychotherapy .honey & vinegar .feverfew extract .chondroitin sulphate .aspirin .cold pack .blackcurrant seed oil .glucosamin .celecoxib .geranium & eucalyptus .ayurvedic herbs .lifestyle program .co-codamol .reiki .borage seed oil .minerals .co-codaprin .swimming .devil's claw . weight loss program .co-dydramol .dowsing .ginger .active release technique .co-proxamol .electrical massage .thunder god root .myofascial release .diclofenac sodium .florid acid .acupuncture .soft tissue mobilization .ibuprofen .lavender oil .acupressure .biofeedback .indomethacin .singapore balm .tumaric .guided imagery .mefenamic acid .hypnosis .pilates .meloxicam .energy healing .prayer .naproxen .fish oil .relaxation .nefopam .willow bark extract .tai chi .paracetamol .meditation .yoga .piroxicam .pet therapy .hydrotherapy .rofecoxib .chiropractic .chelation .craniosacral therapy .serums .vaccines page of (page number not for citation purposes) bmc family practice , : http://www.biomedcentral.com/ - / / was to provide a common-sense, informed list to reflect current ideas about whether an individual therapy is more or less 'cam'. treatments were classified as 'cam' and as conventional (table ). one of the difficulties facing research in the field of cam is defining this type of 'medicine'. it is a heterogeneous group of therapies, substances, supplements, procedures, techniques, rituals, practices, systems etc, which people use, do and undergo while seeking to alleviate health problems or to maintain health. because of their great diversity, the only way to identify these treatments as a distinct group seems to have been by 'negatively' defining them as treatments that are not taught in medical schools or provided in hospitals. in , this group of treatments was defined as "treatments that a conventional unit is unlikely to prescribe" [ ]. within that were included aids for the home (used by patients with arthritis) as well as herbs and acupuncture. other researchers defined cam as a "name given to a system of healthcare that lies predominantly outside the mainstream of conventional medicine" [ ]. ernst [ ] defined this type of medicine as "diagnosis, treat- ment and/or prevention which complements mainstream med- icine by contributing to a common whole, by satisfying a demand not met by orthodoxy or by diversifying the conceptual frameworks of medicine". a definition of cam adopted by the cochrane collaboration is "complementary and alter- native medicine (cam) is a broad domain of healing resources that encompasses all health systems, modalities and practices and their accompanying theories and beliefs, other than those intrinsic to the politically dominant health system of a particu- lar society or culture in a given historical period. cam includes all such practices and ideas self-defined by their users as pre- venting or treating illness or promoting health and well-being. boundaries within cam and between the cam domain and that of the dominant system are not always sharp or fixed" [ ] another definition which was coined by eisenberg in in the usa and was then widely adopted is "medical interventions not taught widely at u.s. schools or generally available at u.s. hospitals" [ ]. the world health organisa- tion's definition of cam is "all forms of health care which usually lie outside the official health sector" [ ]. the bma definition is that cam covers "forms of treatments not widely used by orthodox healthcare professions....skills of which are not taught as part of the undergraduate curriculum of orthodox medical and paramedical health care courses" [ ] statistical analysis data was entered using windows excel and analysed using spss for windows. the dependent variable for statistical purposes was cam use (yes/no). cam use was further sub-classified as cam use only; cam use in addi- tion to use of conventional treatment. prevalence esti- mates including confidence intervals were calculated and statistical testing of differences in prevalence between sub- groups was carried out using the chi-square test. we investigated non-response to participate in our inter- views by using data from the original health surveys undertaken by potential participants and compared those who agreed to interview with those who did not with respect to socio-demographic characteristics, general health status (as measured by the short-form ), and lower limb joint pain and disability (as measured by the womac questionnaire), as well as use of prescribed pain medication and home remedies for pain. results response and sample characteristics of the patients invited, participants responded and all of them attended and completed the interviews (response . %). there were ( %) in the age group – years, ( %) between – years and ( %) in the group years or over; participants were male ( %) and female ( %). distribution by occu- pational category was ( %) professional or manage- rial, ( %) intermediate, and ( %) routine and/or manual. participants reported pain in cpg grade i ( %); ( %) in grade ii; ( %) in grade iii; and ( %) in grade iv. 'lower back' and 'knee' were the most commonly reported areas of pain ( % and % respectively). the majority ( %) reported pain in more than one area. non-response there were insignificant differences between respondents and non-respondents in gender, age, health status or severity of pain and disability. no differences appeared either for health care use between the two groups ( % of those who used at least one prescribed medication responded, compared with % who did not; and % of those who used at least one 'home remedy' responded, compared with % who did not). use of cam and conventional treatments interview participants ( %, % ci = % – %) said they had used at least one cam treatment for pain in the previous year; most ( / , %) being current users. the total number of cam treatments ('episodes of treatment use') reported by all cam users was , which represents an average of . episodes of cam use in this subgroup. our study population represented users of con- ventional services by virtue of all being gp consulters. not all of them, however, had been actually using conven- tional treatment for their pain during the previous year, even though they had seen their gp for their pain during the same period. we therefore looked at the actual use of conventional treatment. a total of interview partici- page of (page number not for citation purposes) bmc family practice , : http://www.biomedcentral.com/ - / / pants ( %, % ci = % – %) reported using at least one conventional treatment, mainly prescribed medica- tion. participants ( %) had used cam treatments only; ( %) conventional treatments only; ( %) had used both cam and conventional treatments, and ( %) had not used cam or conventional treatments. thus, most cam users ( / , %) and most conven- tional treatment users ( / , %) had used both dur- ing the time period of recall. using the treatment list in the interviews led to an increase in reporting of treatment use. the total number of occa- sions on which any type of treatment (cam and conven- tional) had been mentioned as used at least once by participants was , a mean of treatments per person. for of these occasions, treatments were reported with the aid of the list, representing an average increase of reporting, after the list was shown, of . treatments per person. the increased rate of reporting was higher for cam treatments (increased by %) compared with con- ventional treatments (increased by . %). the prevalence of use of individual cam treatments, expressed as the proportion of all interviewees who reported using a cam treatment at least once, is shown in table . in total, of the cam treatments included on the pre-specified lists had been used by at least one of the study participants, and further treatment names had been used but not been included on the lists, of which were cam (table ). these cam treatments were each used by either one or two participants, apart from exer- cises which were mentioned as used by participants. characteristics of treatment users table compares cam and conventional treatment use by age, gender, socio-economic classification and chronic pain grade. there was an inverse association between age and cam use – older patients were significantly less likely table : frequency of cam treatment use, excluding 'other' cam. treatment cam users (total n ) n % glucosamine fish oil massage therapy copper bracelets magnets electrotherapy chondroitin sulphate osteopathic manipulation acupuncture aromatherapy evening primrose weight loss program devil's claw relaxation pilates prayer lifestyle program ginger acupressure reflexology soft tissue mobilisation yoga homeopathy chiropractic feverfew extract turmeric myofascial release therapeutic touch guided imagery pet therapy energy healing hydrotherapy page of (page number not for citation purposes) bmc family practice , : http://www.biomedcentral.com/ - / / to use cam for pain control. men were little different from women in their overall use of cam, though women were significantly more likely to use conventional treat- ments, and hence the combined use of cam and conven- tional treatment was significantly higher in women. cam use was significantly different between socio-eco- nomic classes; cam use was higher in intermediate and routine and manual occupations than in professional and managerial occupations. a higher percentage of cam use was reported in those with cpg of iii-iv compared to those with cpg of i-ii; the statistical test for trend was not significant however. there was a significant trend toward greater use of conventional treatments with increased cpg category: % of those with cpg-iv had used con- ventional treatments compare to % of patients with cpg-i. reasons for using and stopping cam treatments table illustrates that the most commonly reported intro- duction to using at least one cam treatment was through a recommendation from a friend or a relative ( / , %). most of the cam users ( , %) gave their reason for using at least one of their cam treatments as: 'i like to try anything that may work'. of the episodes in which cam treatments were used, practitioners had been involved in ( %). forty-one cam users ( , %) had stopped at least one of their cam treatments. the total number of episodes in which cam treatments were stopped was ( / , %). the reasons given for stopping cam treatments are shown in table . perceived helpfulness of cam a summary of helpfulness scores given for the most com- monly used cam and conventional treatments is shown in figures a and b. of the most common cam treat- ments, osteopathy, relaxation, aromatherapy and evening primrose had the highest median helpfulness scores i.e. or above, whereas devil's claw and copper had the lowest median scores i.e. zero (figure ). harm (negative scores on a (- ) to (- ) vas) was reported by eight users ( / , %) from cam treat- ments. harm scores ranged from the highest of - reported for acupuncture (one user) to - reported for acu- pupressure (one user), massage ( users), electrotherapy (one user) and chiropractic (one user) to - for devil's claws (one user) and - for yoga (one user). all five of the most commonly used conventional treat- ments had median scores of or above. however, not all responses to use of conventional treatments were positive (figure ). intention on future use of cam most cam users said they would use the particular cam treatment for pain in the future. out of the recorded table : use of cam and conventional treatments by socio-demographiccharacteristics and severity of pain. n cam treatment use n (%) conventional treatment use n (%) combined use n (%) yes no yes no yes no all participants ( ) ( ) ( ) ( ) ( ) ( ) age groups – ( ) ( ) ( ) ( ) ( ) ( ) – ( ) ( ) ( ) ( ) ( ) ( ) + ( ) ( ) ( ) ( ) ( ) ( ) p = . * p = . p = . gender male ( ) ( ) ( ) ( ) ( ) ( ) female ( ) ( ) ( ) ( ) ( ) ( ) p = . p < . p = . socio-economic class professional or managerial ( ) ( ) ( ) ( ) ( ) ( ) intermediate ( ) ( ) ( ) ( ) ( ) ( ) routine or manual ( ) ( ) ( ) ( ) ( ) ( ) p = . p = . p = . cpg i ( ) ( ) ( ) ( ) ( ) ( ) ii ( ) ( ) ( ) ( ) ( ) ( ) iii ( ) ( ) ( ) ( ) ( ) ( ) iv ( ) ( ) ( ) ( ) ( ) ( ) p = . p = . p = . p-values were derived by chi square test (test for linear trend in the case of age group and cpg) page of (page number not for citation purposes) bmc family practice , : http://www.biomedcentral.com/ - / / uses of cam treatment, users stated that they would use ( %) of these again. discussion use of cam and conventional treatment directly asking primary care consulters with chronic mus- culoskeletal pain about how they treated their pain, with- out indicating in the question that we were interested in any particular class or group or type of treatment and not asking the interviewees to distinguish between conven- tional or cam therapy, we found the prevalence of cam use high. more than four of every five patients interviewed had used at least one cam treatment, and more than two thirds of cam users were current users, representing more than half of the study sample. using an open question alone, even though clearly explaining that we were interested in every type of treat- ment used, would still have provided us with incomplete information, had we not used the list which appeared to lead participants to mention more treatments. this could be a simple issue of recall, but could also represent their reluctance to admit to using certain treatments, especially knowing that the interviewer was a doctor. previous sur- veys have found a similar effect [ , , ]. the preva- lence of cam use, in one survey, increased from % to % when introducing a treatment list [ ]. it has been shown that the larger the number of treat- ments included on the list, the larger will be the estimates of prevalence.[ , ]. it is possible that using such lists could trigger incorrect memory or confuse participants into thinking that they have used treatments that they have not, because of similarities either in names or in actual treatment technique (e.g. acupuncture and acupres- sure). such a possibility could inflate the prevalence with inaccurate estimates. this has led some researchers to con- fine their exploratory work to a small number of treat- ments in order to obtain precise information [ ]. we were aware of this issue and the trade-off between obtaining accurate information on a small number of treatments and exploring all treatments that were being used for pain. because we used face-to-face interviews, we used the opportunity to deal with any possible confusion and clar- ify that the participant had actually used the treatment. such opportunity would not have been available if other methods had been used e.g. postal survey. secondly, we asked a number of detailed questions about each treat- ment reported, and this would have reduced the chance that the participant might have mentioned the treatment by mistake. the extent of the increase in reporting treatment use in conjunction with the list was twice as high with cam as with conventional treatments ( / , % vs / , . %). a possible explanation is that participants might have been less likely to volunteer, to a doctor, information related to cam compared with conventional treatments, an observation made in previous surveys [ , , ]. this would correlate with the comments of many participants that they did not realise that we were also interested in these (cam) treatments. we were not able to find a simi- table : reasons for using and stopping cam treatments. ways participants introduced to cam n (%) reasons for using cam n (%) reasons for stopping cam n (%) recommended by a friend or a relative. ( ) i like to try anything that may work ( ) i finished the treatment course ( ) prescribed, or referred to it, by a health professional ( ) i was referred to it or it was prescribed for me ( ) i don't think i need it anymore ( ) media (tv, radio, newspapers, internet) ( ) i find that it helps me in general not just for pain ( ) cannot afford it ( ) literature ( ) i believe in it ( ) it caused me problems or side effects ( ) practice it/involved with it ( ) other treatment caused me problems or side effects ( ) i heard of a bad experience with it not available where i live my doctor advised me against it other ways* ( ) other reasons* ( ) other reasons* ( ) found it in a shop brought in by a relative didn't help local advertisement compatible with birth sign only use it when i need it previous experience suggestion by others not practical family experience persuaded by evidence caused more pain experience at vet use natural product staining workshop carried on, don't know health farm family experience own initiative has no side effects practitioner is a friend previous experience the gym heard its good social class recommended in a magazine thought it may work total total total *these other ways/reasons were not included in our lists and were offered freely by participants. items are listed in a descending order according to how commonly they were mentioned. page of (page number not for citation purposes) bmc family practice , : http://www.biomedcentral.com/ - / / lar comparison between the effect of using a list on report- ing cam and conventional treatments among the published surveys in the literature. we were not aware of published surveys that specifically targeted primary care patients in the uk to explore their cam use for musculoskeletal pain. it is difficult therefore to compare our findings with those from previous surveys in the uk, many of which either targeted patients attend- ing hospital clinics and who had known diagnoses e.g. rheumatoid arthritis [ , , , , ], fibromyalgia [ , ], multiple sclerosis [ ] or post-spinal cord injury [ ] or targeted individuals in the community [ , ] suf- fering from chronic pain in general and not specifically musculoskeletal pain. surveys that looked at cam use in primary care in the uk mainly explored access to cam and gps' use and attitude towards it. it was found in a number of these surveys that between % and % of participating gps were 'active' with respect to cam, i.e. practising it, referring for it or endorsing it to their patients [ , , , , , ]. this could be one possible reason for the high rate of use of these treatments among their patients. we did not ask our participants whether some cam treatments were practised by conventional health professionals. we know, however, that a third of cam users in our study said that they came to use cam because they were referred to it, or it was recommended, by a health professional. for a quarter of cam users in our study, that was their main reason for using cam treat- ments. this obviously refers only to cam use for chronic musculoskeletal pain and does not include its use for other reasons. this could indicate high 'activity' in rela- tion to cam in the general practices in the area where we conducted our study, which could explain high cam use among individuals like our sample of primary care patients. it would be interesting to explore any direct asso- ciation between gps activity with regard to cam and its use among their patients. in the usa, surveys have explored cam use among pri- mary care patients [ - ]. however, it was general use of cam that was explored rather than use linked to a specific condition or symptom. in one survey [ ], it was found that % of patients, interviewed while visiting their pri- mary care doctor, had used cam treatment for the medi- cal problem linked with that gp visit. it is difficult to apply findings related to family medical practice in the usa with primary care in the uk because of the variations in structure, profile and activity. surveys among pain sufferers found the prevalence of cam use ranging from % up to % in the uk [ , , - ] and the usa [ , - , ]. the variation in the prevalence figures is likely to reflect variation in sur- vey methodologies. the majority of these surveys, how- ever, showed the prevalence of cam use to be consistently higher among pain sufferers compared with other patients. the two main characteristics that our participants have, namely that they are actively using primary healthcare and that they suffer from chronic musculoskeletal pain, would make them, according to these previous surveys, the more likely users of cam. this puts the high prevalence figure observed in our study into perspective. our study participants were, by selection, users of conven- tional healthcare, most having made more than two visits to their general practitioner in the previous year. we found that most of this study population were actually using conventional treatment in combination with cam. this suggests that patients whom gps saw most frequently for musculoskeletal pain were more likely than not to be using cam treatments as well. this is consistent with the extensive use of cam and conventional healthcare serv- ices by patients with chronic pain observed in previous surveys [ , ]. the high rate of combined use of cam and conventional treatments could reflect high unmet needs. surveys have shown that regardless of whether a chronic illness was reported, cam users tend to report poorer health com- boxplot summary of perceived helpfulness scores on the vas for the most commonly used conventional treatmentsfigure boxplot summary of perceived helpfulness scores on the vas for the most commonly used conventional treatments. values represented are number of users and -number sum- mary (median, th and th percentiles and range) and out- lier observations (data that lie outside the interval: median ± . × mid-spread). page of (page number not for citation purposes) bmc family practice , : http://www.biomedcentral.com/ - / / pared with non-users [ , - ]. however, in one survey [ ] it was found that use of cam was more than twice as common among high users as among low users of medi- cal services in general suggesting that high combined use represents a characteristic of the individuals and is unre- lated to their health status or needs. the high grade of severity of reported pain among our par- ticipants would probably be expected with our partici- pants being active users of the health service because of their pain. the positive association between the frequency of gp visits and pain severity has been identified in previ- ous surveys [ , ]. % of our participants had visited their gp at least twice during the previous year for muscu- loskeletal pain and % were using some form of conven- tional treatment, mainly prescribed medications. it appears, therefore, that the majority of our patients with chronic musculoskeletal pain who use both cam and conventional treatments and are visiting their gp (for whatever reason) are still symptomatic and it is possible that this is one reason for their use of both types of treat- ment. this is important because it increases the relevance of the high use of cam treatments by chronic muscu- loskeletal pain patients. it seems to tally with the common perception among gps of the lack of effective treatments for such symptoms. this would lead some patients at least to try anything that might help with their pain. it is important to note that by targeting chronic muscu- loskeletal pain sufferers who are using primary care serv- ices, a group of patients with the same pain and who are not using primary care services were not reached by this study. this is a potentially important group of patients, some of whom might be exclusively using cam for pain. we cannot comment in this study on the use of cam among such group and our findings remain only applica- ble to primary care consulters. cam definition the availability of a single agreed epidemiological defini- tion is important for surveys if the results are to be com- prehensible and comparable. the use of varied definitions for cam, as was highlighted earlier, has its effect on research in this field. that effect is evident from the type of research questions used in these surveys and the wide range of prevalence figures for use of cam. considering the types of 'treatments' which fall under the umbrella of cam, it seems that for a part of them at least local availa- bility and recognition is important to correctly estimate the prevalence of their use. on the other hand, this local approach needs to be balanced by the need to accurately compare findings of various surveys. we therefore have used a local consensus on what is con- sidered as cam or conventional treatment and we also present our findings for individual treatments to allow for differing definitions to be applied and for accurate com- parison to be made. socio-demographic characteristics of treatment users the typical socio-demographic characteristics of the majority of cam users in our study did not echo those from the majority of studies in which cam users were found more likely to be women [ , ] from higher social class groupings. [ , , , , ] there are, how- ever, studies which did not find a link between higher cam use and higher income [ ] or any significant differ- ence by gender among cam users [ , , ]. the reason for the contrast between our results and other studies' might lie in regional variations in cam use [ , ] or might represent patterns specific to sufferers of chronic musculoskeletal pain. it has been suggested that the observed regional variation in cam use more likely to reflect variation in access and availability than regional differences in public attitude and interest [ ]. access to these treatments can be severely restricted, with % of cam provided in the pri- vate sector [ ], leading to the suggestion that its use is related to the affluence of the area [ ]. surveys have shown that cam use in the south west of england, for example, was higher than the national average ( % vs %) [ ]. geographical variation in the availability and provision of cam has been suggested as another possible explanation for variation in use [ , , ]. one factor that was shown to influence cam availability is the nature of local con- ventional healthcare services and primary care in particu- lar (i.e. practices' attitude towards cam and its provision; gp's special interest in cam or antipathy towards it) [ ]. gp endorsement of these treatments varied between areas ( % in liverpool area vs % in the south west of eng- land) [ , ] as well as their active involvement i.e. prac- ticing cam [ , ]. variation in demand could also influence availability of cam. it has been shown that the prevalence of chronic pain, one of the most common health problems for which cam is used, varied widely across geographical areas. [ ] it is interesting to attempt to explain our finding of the higher use of cam and conventional treatments com- bined among women compared with men. it has been shown in one survey at least, that women were more likely than men to report chronic pain with no difference between genders in the reported severity of pain.[ , ] which could arguably offer an explanation. women were also more likely to report high expressed needs than men [ ]. in another study, where use of healthcare services page of (page number not for citation purposes) bmc family practice , : http://www.biomedcentral.com/ - / / was explored, women were found more likely to have used prescription and non-prescription medications, alternative therapist and alternative medication [ ]. this could suggest that the high use among women, compared with men, of both conventional and unconventional medicine for pain, is related to their higher expressed needs and not to the severity of the reported pain. perceived helpfulness from using cam attempts to assess this have been made in past surveys from information mainly based on doctors' reports of their patients' benefit from using cam [ , , , ]. however doctors' knowledge of their patients' use of cam is often very limited [ , ] and the views of doctors and patients on the usefulness of cam may differ [ ]. there has been much recent debate about the lack of avail- able evidence regarding the efficacy of cam treatments. cam treatments in our study were generally found to be helpful by participants, echoing previous findings from one systematic review [ ]. this might represent what is called as the effectiveness gap [ ], although in a reversed way. the effectiveness gap is said to exist when a treatment is shown to have an effect based on its pharmacological action but shows a smaller effectiveness in clinical prac- tice. here, the gap seems to exist when treatments (such as some cam treatments) are perceived to be helpful by users when no evidence for their effect exists. although the number of participants who reported expe- riencing harm in the form of worsening pain symptoms following the use of some cam treatments was small and although these data do not represent an objective measure of effectiveness, one conclusion is that, although benefi- cial effects on pain from each cam treatment are com- monly reported, many users do not perceive cam to be automatically beneficial, and a number of them (substan- tial if extrapolated nationally) considered themselves to have experienced harmful effects. the range of scores for perceived helpfulness from the commonly used conventional treatments was wider than for cam treatments, and there were higher harm scores. the latter might be balanced or off-set by evidence of effectiveness the likes of which is lacking for many cam treatments. interestingly, some of the favourable cam treatments, such as chondroitin sulphate and osteopathy, had higher average ratings for perceived helpfulness than paracetamol, ibuprofen and co-codamol. the differences in the numbers of users, however, make accurate compar- ison difficult beyond mathematical extrapolation. this issue merits further investigation. an important finding in our study was the instances where participants reported harm attributed to the use of treatments. the eight instances of harm attributed to the use of seven cam treatments represent a small percentage of the total number of instances on which cam treat- ments were used. these seven cam treatments had been used times in this study's population. some observations could be made on these harm reports. firstly, these harm scores were reported for some treat- ments that also received high perceived helpfulness scores from other users. electrotherapy received nine positive scores (+ to + ), massage received positive scores (+ to + ) and acupuncture received positive scores (+ to + ). secondly, although the question was about perceived helpfulness in relation to pain, we believe that reported negative scores might not have always meant "worsening of pain following using the treatment" but might also meant other adverse effects which may not be related to pain. we did not expand on the nature of the harmful effect that was reported and this information was col- lected as a score on the negative arm of (- ) to (+ ) vas. thirdly we do not know whether these effects were reliably caused by these treatments. the answers were purely subjective. it is interesting to compare the number of these reported harmful incidents with the number of participants who said that they have stopped cam because it caused them problems or side effects. these reasons for stopping were given on fewer occasions of cam use (six) than reported harmful events (eight) and not all these cases are the same. this could either reflect the unreliability of the assessment made by the participants, or that some of them did report harm which was not of a type or severity that had made them stop the treatment. finally, it seems that reporting harm was more likely to be related to prac- titioner dependent treatments, although the number of instances was too small to validate this conclusion. although the number of reported perceived harm instances is small, they are nevertheless important. they highlight the fact that these treatments are not universally experienced or perceived as harmless. they are also important in the debate about the safety of cam and its integration within the mainstream health services. harmful events attributed to cam use have been reported previously. % of gps in one survey reported adverse effects related to cam use by their patients [ ]. in another survey, % of responding gps reported similar harmful effects [ ]. a survey in australia found that % of users of naturopathy reported effects [ ]. the adverse events reported in the surveys studied in a systematic review of the use of cam in rheumatology were low [ ]. in addition to users' views and perceptions on harm, doc- tors, on the other hand, have a different view of the harm page of (page number not for citation purposes) bmc family practice , : http://www.biomedcentral.com/ - / / they perceive and attribute to using cam. in one survey % of the participating physicians suggested that cam use prevents patients from getting proper treatment [ ]. the issue of perceived helpfulness is important, with implications for safety, integration and future research. with the increasing use of cam and the increasing amount of anecdotal evidence for its helpfulness, or oth- erwise, by users, some are suggesting that there should be room for debate as to who decides what is and what is not effective and on what basis, at least in the nhs [ ]. future intention on using cam we could not find published surveys in the uk that addressed this issue, although it has been reported in american surveys [ ] where strong intentions to use cam again in the future were identified. future use of cam may be influenced by perceived helpfulness [ ]. in our study, there was a contrast between the intention on future use of conventional treatments, which most partic- ipants felt would be strongly influenced by doctors' advice, and future use of cam which appears to be more dependent on a wish to try anything that might help. response and generalisability a limitation to the study was the higher than anticipated reluctance to be interviewed, which meant that we had a final study population of as opposed to the pre- specified in the sample size pre-requisite. we had also underestimated the amount of cam use. revisiting the power calculation post hoc and taking a % difference in cam use based on a greater base value of % cam use in the study population, meant that given a sample size of we had % power of detecting this difference if it existed i.e. there was little loss in power compared to the prior calculation. we took advantage of the fact that our patients had com- pleted earlier postal surveys to compare responders and non-responders with respect to gender, age, pain and health status scores and health care use in general, as well as use of specific 'home remedies' (e.g. cod liver oil) which had been enquired about in the postal questionnaires. differences were small and it is unlikely that those inter- viewed represent an unusual sample of our target popula- tion with respect to their general experience of pain and willingness to use a variety of treatments. furthermore cam was not mentioned or referred to during our study, and so responders are unlikely to represent a group specif- ically interested in this topic. generalising our study findings to the wider population of all patients with chronic musculoskeletal pain who are using primary healthcare services in the uk would require caution. cam use varies between different parts of the country [ , ], and this may influence use among con- sulters also. this variation might explain why the use of some individual cam treatments, such as homeopathy, was lower among our participants compared with other surveys' [ ]. however it seems unlikely that the broad pat- terns identified here would differ substantially in other primary care settings. conclusion we have estimated the prevalence of cam use among musculoskeletal pain consulters in primary care in the uk, by directly asking a sample of such patients about all the methods which they used to alleviate their pain. the high rate of cam use and wide range of experience of ben- efit and harm strengthen the argument for research to quantify benefit and assess safety of this type of treatment. the fact that the majority of cam users in our study remained active users of conventional medicine and that their use of cam was related to the persistence of their pain further highlights the importance of the research on the optimal management of pain in primary care. competing interests the authors declare that they have no competing interests. authors' 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complement med , : - . pre-publication history the pre-publication history for this paper can be accessed here: http://www.biomedcentral.com/ - / / /prepub page of (page number not for citation purposes) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids= http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids= http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids= http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids= http://www.biomedcentral.com/ - / / /prepub http://www.biomedcentral.com/ http://www.biomedcentral.com/info/publishing_adv.asp http://www.biomedcentral.com/ 	abstract 	background 	methods 	aims and objectives 	study design 	setting 	participants 	results 	conclusion 	background 	methods 	setting and study population 	sample size 	design 	cam and conventional treatments 	statistical analysis 	results 	response and sample characteristics 	non-response 	use of cam and conventional treatments 	characteristics of treatment users 	reasons for using and stopping cam treatments 	perceived helpfulness of cam 	intention on future use of cam 	discussion 	use of cam and conventional treatment 	cam definition 	socio-demographic characteristics of treatment users 	perceived helpfulness from using cam 	future intention on using cam 	response and generalisability 	conclusion 	competing interests 	authors' contributions 	acknowledgements 	references 	pre-publication history wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top 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// // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ sezione: pedagogia sociale, interculturale, della cooperazione ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - training in non-pharmacological approaches to dementia and alzheimer elena luppi university of bologna abstract the increase in the elderly population is leading care services to reconsider their models of intervention and their practices. when taking care of older adults suffering from alzheimer’s or dementia, it is fundamental to take into account not only their medical needs, but also any psycho-social dimension that has an impact on their lives and well-being (kitwood ). this contribution presents the first results of an erasmus+ eu project based on these assumptions. the project, called "salto – social action for life quality training and tools" starts by considering that the training of social workers needs to be improved in order to equip professionals with a wider range of approaches and methods to cope with alzheimer’s and dementia. when dealing with such diseases, it is impor- tant to improve people’s quality of life, at the same time min- imising the effects of behaviour-related disorders. long-term care is the responsibility of both medical and social organisa- tions. elderly care is “medical” because their beneficiaries re- quire care, whether routine or occasional, which is essential for their daily comfort; but they are also “social” because they target protection, independence, social cohesion, active citi- zenship and the prevention of isolation (brune , ; calkins ; rahman & schnelle ; shura, siders, dan- nefer ). keywords: dementia, life quality, non-pharmacological ap- proaches, education, training elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - abstract l'aumento della popolazione anziana sta portando i servizi di assistenza a riconsiderare i intervento e le proprie pratiche e i relativi modelli di intervento. quando ci si prende cura degli anziani malati di alzheimer o demenza, è fondamentale tener conto non solo delle esigenze mediche, ma anche dell’impatto che la dimensione psico-sociale può avere sulla loro vita e sul loro benessere (kitwood ). questo contributo presenta i primi risultati di un progetto europeo erasmus+ basato su tali assunti. il progetto, denominato "salto - azione sociale per la formazione e gli strumenti di qualità della vita", scaturisce dalla convinzione che la formazione degli operatori dei servizi per anziani debba essere migliorata per fornire a questi professionisti una gamma più ampia di approcci e metodi per far fronte all'alzheimer e alla demenza. ciò che è importante, nel trattare tali malattie, è migliorare la qualità della vita delle persone, riducendo al minimo gli effetti dei disturbi legati al comportamento. la cura degli anziani non autosufficienti è in carico a organizzazioni che sono sia mediche che sociali. l'assistenza agli anziani è "medica" perché i loro beneficiari richiedono cure, sia di routine che occasionali, essenziali per il benessere quotidiano; ma sono anche "sociali" perché lavorano per offrire protezione, indipendenza, coesione sociale, cittadinanza attiva e prevenzione dell'isolamento (brune , ; calkins ; rahman & schnelle ; shura, siders, dannefer ). parole chiave: demenza, qualità della vita, approcci non farmacologici, educazione, formazione. elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - introduction the european erasmus+ salto project aims to com- bine ‘‘life projects’’ with ‘‘care projects” in long term care; this means breaking down the compartmentalisation of health- care and medico-social environments, in order to start think- ing and working in a more integrated perspective. the project aims to promote innovate training of social workers to im- prove their competences related to non-pharmacological ap- proaches: any method and technique that can enhance the quality of life of elderly patients in a psychosocial and environ- mental perspective (feil , ; johnes ). the project objective aims at the full integration of non- pharmacological approaches in daily medical therapy in the training of formal carers. the salto project aims to integrate social-educational methods as part of the daily therapy, in or- der to develop or maintain cognition, body motion and social skills, which are all fundamental for the quality of life of el- derly persons suffering from dementia. to provide a coherent and operational response to this issue, the project brings to- gether professionals and organisations, pooling their re- sources to match and combine the perspectives of researchers and professionals, trainers/educators and social development specialists, healthcare and socio-medical professionals. this document presents the first delivery of a social ani- mation training programme that can be offered in universities and vocational training centres, as well as in-service training courses for practicing professionals. . theoretical framework the training model refers to some empirically validated paradigms that focus on theoretical bases and values. these models overcome adult-centric stereotypes of the elderly to fo- cus on the person him/herself, his/her needs and the promo- tion of quality of life in the third age. elderly care, particularly that provided in institutionalised care contexts, is historically elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - characterised by a prevailing medical-health approach, often with low consideration of psycho-social needs. today many people express the need to reintegrate the various aspects of formal and informal care, in order to respond to both medical- health and psycho-social and human needs. quality of life is defined by the world health organisa- tion ( ) as an individual’s perception of their position in life, in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. this definition reflects the idea that quality of life refers to a subjective evaluation, embedded in a cultural, social and environmental context. as such, quality of life can- not be simply equated in terms of “health status”, “life style”, “life satisfaction”, “mental state”, or “well-being”. it is rather a multidimensional concept, incorporating the individual’s perception of any aspect of life. according to monique formarier ( ), the areas influ- encing a person's quality of life include their state of health, the severity of their disability, psychological and spiritual as- pects, their family and friends and socio-economic level. qual- ity of life varies according to each person’s appreciation of his or her own norms and values; it changes over time, at differ- ent ages of life. . innovative organisational models for elderly care particular inspiration came from the models of the cul- ture change movement (brune , , rahnam & schnelle , calkins , thomas , shura, siders, dannefer ) and the principles of quality of care described by coons and mace ( ). all these authors underline the need to see elderly well-being from a holistic perspective, con- sequently designing care services that respond to individual needs, in physical, psychological, social, intellectual, emo- tional and spiritual spheres. the culture change movement was born in the united states, with the transition of elderly care facilities from a med- elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - ical and managerial model to a social-humanistic model, and spread throughout the world, bearing witness to a real change in the elderly care culture. adopting a range of approaches, this model is in contrast to the management models of resi- dential facilities established in the sixties (ltc: long-term care management models) based on organisational optimisa- tion, using a bureaucratic managerial system focusing on effi- ciency, service standardisation and cost optimisation, adapt- ing services for the elderly in a manner very similar to those of hospitals. according to these models, the facilities were de- signed as places shut off from the outside world, governed by strict routines, marked by spaces and times in which the role of the staff focused far more on control than on support (calkins ). the ultimate objective is to achieve the best possible quality of life, for both guests and members of staff. to do so, the importance of in-service training for staff and coordinators is emphasised, in a perspective of what is defined as wise leadership (thomas , brune ), a care culture focus- ing on people and an individualised approach to organisational and project choices. this individualisation does not only con- cern the guests, but also considers the importance of the care relationship between guests and workers, including the latter in the needs analysis and the consequent design of interven- tions. recognising and safeguarding freedom, autonomy and dignity, these person-focused approaches privilege all possible strategies to reduce medicalisation or measures of contain- ment of the disorders the guests suffer from. at the same time, the organisational style promoted revolves around dia- logue among the staff, to reduce distances, vertical relations and excessive bureaucracy, to foster the most direct dialogue possible between the staff and the elderly and their loved ones. it clearly moves away from the adult-centric perspective in which the needs of the elderly are established indepen- dently of the actual conditions and wishes of the elderly them- selves. elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - . innovative models and concepts in elderly care the training programme developed by the eu salto project aims to accompany care professionals and care organi- sations towards the transition indicated by the culture change movement. for such purposes, the training contents and methods are based on a few key concepts and models in the innovation of elderly care: the “gentle care” model, (jones ), “person centred care”, “validation” and the “bientrai- tance” model. all these models focus on a change of perspec- tive towards ageing and frailness and on the importance of the humanisation of care. . . the “gentle care” model the gentle care model, created by moyra jones ( ), is an approach for seniors and caregivers that promotes well- being for the former and reduces the risk of burnout for the latter. this approach is centred on elderly people and the preservation of the continuity of their life. as a starting point, the model analyses the person, not only in terms of clinical is- sues, but also regarding their biography, personal characteris- tics and their relationship with the environment (guaita a, jones m., ). this broad-spectrum analysis is completed by assessing the impact of the disease on the person, both physi- cally and psychologically, in their daily life and in terms of re- lated coping strategies. this evaluation is carried out using the quantitative tools typical of multidimensional and qualita- tive evaluation, where the (formal or informal) caregiver acts as an active observer and the elderly person is the subject of evaluation and self-evaluation. this assessment includes the recognition of the elderly person’s residual capacities, daily actions and routines, caregiver actions and responsibilities, and relative peaks or risks of stress. this complex, in-depth evaluation process leads to the design of a care project, based elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - on realistic goals, following the analysis of the patient's strengths and weaknesses (carbone g., tonali a., ). in designing care, the model focuses on the physical environ- ment, i.e. the place and space (or spaces) of care (guaita, jones ), which should be characterised by security, easy access and mobility, functionality, flexibility and possibility of change. the caregiver also plays an important role in the care project, both by sharing it and communicating with the care providers, who must be aware of the relational dynamics within the elderly person’s family and their family’s resources (from day-to-day organisation and management to strategies for coping with critical situations (vitali, ). . . person centred care the person centred care model (hafskjold, l., sundler, a. j., holmström, i. k., sundling, v., van dulmen, s., & eide, h. ; lloyd, b., & stirling, c. ; ross, tod, & clarke, ) distances itself from the idea that the attention provided in most elderly care services is closely linked to people’s deficits and pathologies, which makes it difficult to see the person as a singular, valuable individual. in this sense, care is conceived from a very “paternalistic” perspective, where the professional and the institution decide for the good of the el- derly person (to improve their health, keep them safe ...) ig- noring what each person feels and thinks and far from consid- ering that the most important issue is to ensure that people enjoy life and are happy in old age. person-centred care (pcc) is a personalised way to sup- port people, developing their own life project with their effec- tive participation, taking into account not only their needs but also their preferences and desires. it is based on the recogni- tion of the dignity of each person and their right to be in charge of their own lives. when a person needs support, health and personal care are essential, but the things that the person likes, their habits elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - and personal relationships are equally important. a central point of this model is the recognition and support given to the person to focus on what is really important for them at the present time of their life. everyone, consciously or uncon- sciously, has their own life project. elderly people also have their own life project. in the pcc model, professionals and or- ganisations become the support the elderly need to develop their life projects in a positive way (rokstad, vatne, engedal, & selbæk ). . . validation this method, developed by naomi feil between and , promotes mental development in elderly people with problems, classifying their behaviour and helping them to recover personal dignity. the validation method is founded on the life stages theory of erik erikson (erikson ) and em- phasises the close dependence between biological, mental and social aspects of life. erikson stated that we can only succeed in completing a given task assigned to us in a given phase of our life if we have positively completed the tasks in the early years of our existence. every moment of our life sets us tasks to achieve; if we are not able to achieve our objective, it will be set for us again. it is often very hard to achieve a task the first time round, and moreover, it is possible that we will never really be able to achieve one or more tasks. in this per- spective, the third age represents the period in which emo- tions that were not resolved in the past need to be released. (day ). a fundamental task of the validation method operator is therefore to listen, even though, given the late stage in life, it is not always possible to achieve resolution. the fundamental points of the validation technique in- clude: ) gathering information on the elderly person. in particular it is fundamental to know: their stage of disorienta- tion; their unresolved tasks and emotions; their past human elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - relations and affections; their profession, hobbies; religious at- titudes and beliefs; the way in which they tackle difficulties and losses; their history. this information can be gathered by asking the elderly person questions, at different times of the day, and for at least two weeks. the questions were drafted by feil, and have to be fairly precise in order to guide the opera- tor. ) assess the stage of disorientation. these stages may be:  first stage: difficulty in orientation.  second stage: confusion with time.  third stage: repetitive movements.  fourth stage: vegetative life. ) meeting the person regularly and using the vali- dation techniques. the length of each meeting depends on the person’s stage of disorientation: from a minimum of one to a maximum of fifteen minutes (less time is spent with those with greater problems). in any case, it is not so much the quantity but rather the quality of time that is important. the ideal fre- quency also depends on the specific situation: from several times a day to a few times a week, or even less frequently. it is important to recognise the elderly person’s feeling of less dis- comfort that indicates the length of the meeting (also in this case, feil gives very precise indications). (feil ). . . bientraitance according to the high authority for healthcare, “well treatment” is a comprehensive approach to the care of pa- tients, users and their families, aimed at promoting respect for the rights and freedoms of patients, users, their listening skills and their needs, while at the same time preventing abuse. this global approach emphasises the role and interac- tions between different actors such as the professional, insti- tutions the patient and their relatives. it requires both individ- ual and collective questioning on the part of the actors. elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - according to the anesm (agence nationale de l'evaluation et de la qualité des établissements et services sociaux et médico-sociaux) good practice recommendations:  well treatment is a shared culture of respect for the in- dividual and his or her history, dignity and uniqueness. for the professional, it is a way of being, saying and act- ing, caring for others, which is responsive to their needs and demands and respectful of their choices and re- fusals.  well treatment incorporates the desire to maintain a stable institutional framework, with clear rules that are known and secure for all, and an uncompromising re- fusal to accept any form of violence.  the user’s expression is valued. well treatment is an ap- proach that responds to the user's rights and choices.  the process of well treatment is a permanent return trip between thinking and acting. it requires both collective reflection on the practices of professionals and the rig- orous implementation of the measures recommended by collective reflection to improve them. from this point of view, it leads to the adoption of a permanent question- ing culture.  the search for well treatment is a continuous process of adaptation to a given situation. essentially, it is never- ending: it implies the permanent reflection and collabo- ration between all the professionals involved in care. . the training programme and its implementation module – changing paradigms on the benefi- ciaries target initial and in-service training trainers experts in geriatrics, neuropsychiatry, psychology. learning contexts vocational training, university - adult education – in-service training. elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - purposes and goals - knowledge of the profiles of the beneficiaries; - knowledge of the rights of beneficiaries; - changing representations, paradigms and stereotypes to acquire a watchful and empathetic posture. contents - ageing and/or disability: pathologies, cognitive disor- ders, physiological-psychological-social points of view, etc. - impact on quality of life; - legislation on the rights of frail and dependent persons; - elderly or disabled people in other cultures - anthropol- ogy; - history of ageing and people with disabilities (by terri- tory); - evolution of generational profiles in our territories. methods and description of the activity tools, no. of persons, spaces, etc. brainstorming on ageing/disability (oral or written) lessons with multi-media support case studies in small or large groups discussions in small or large groups choice of inductive or deductive sequence: either we can start from the analysis of cases or problems to ar- rive at the theory or we can present the theoretical elements and then cases and problems. tools: computer, video projector, slides, internet, case to ana- lyse, paperboard. space: room with mobile chairs. no. of participants: max. recommended duration: - hours methodological guidance for evaluation (diagnostic, formative and final evaluation tools) diagnostic evaluation: brain storming formative evaluation: observation of group activities. discussion final evaluation (of learning): questionnaire/test on theoretical elements. elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - case study for the application of theory. starting from these premises, a training programme for pro- fessionals taking care of fragile elderly people was designed. the programme includes eight modules that can be applied all together in sequence or can be selected to build different training paths, according to the targeted learning needs. the programme can be addressed to students of care-related disci- plines (in universities or vocational training programmes) or care professionals in service. each module has different pur- poses, contents, methods and tools, a suggested minimum and a maximum length, different kinds of trainers and is conceived to be as adaptable as possible to the given training situation. a summary of the main characteristics of each module is pro- vided below, each with a short description of: - the target to which the module can be addressed. - the trainers - the learning context - the purposes and goals - the methods and description of activities - the tools – no. of persons – spaces – time, etc. - methodological suggestions for assessment (diagnostic, formative and summative) module – non-pharmacological therapies: a leverage for quality of life target initial and in-service training trainers experts in education and social interventions, experts in innova- tive methodologies for ad (pet therapy, music therapy, theatre, etc.) learning context vocational training education, university, adult training, life- long education purposes and goals purposes learning approaches and methods of non-pharmacological ther- elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - apies in order to apply them in a care context. goals - organisation of spaces and atmospheres/settings/re- sources for well-being - adoption of a relational, emphatic style of communication - development of activities to promote the well-being and maintenance of personal resources. - design, development and assessment of interventions based on social animation contents organisation of spaces and atmospheres/settings/resources communication non-violent communication validation therapy gentle care sensory stimulation methods cognitive stimulation methods person-centred approach occupational therapy enabling approach psychomotor activity - body stimulation reorientation (riot) therapy in reality reminiscence method use of new technologies for communication person-centred project implementation and evaluation montessori method for alzheimer’s and dementia methods and description of the activities tools – no. of persons, spaces, etc. lessons with multi-media support videos simulations. case studies external visits/activities. space: according to the planned activity. no. of participants: max. recommended duration: - hours methodological guidance for evaluation (diagnostic, formative and final evaluation tools) formative evaluation: elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - observation of activities discussions final evaluation (of learning): case study and project simulation. module – the relationship and communication with the beneficiaries target initial and in-service training trainers experts in communication (from a psycho-relational point of view) and/or psychology and/or education and/or social work. learning context vocational training education, university, adult training, life- long education purposes and goals purposes improving relationships and communication for a better quality of life. goals acquire skills for: - listening and knowing how to communicate with beneficiaries in an empathetic manner - taking into account verbal and non-verbal communication (gentle care) - learning to know how to manage the reception phase and criti- cal moments - giving value to diversity contents empathic communication - non-violent communication (rogers), verbal and non-verbal communication (gentle care) reception, daily life and critical moments management of diversities - intersectionality (gender-ethnicity- age, etc.) verbal and non-verbal communication augmentative alternative communication (use of new technolo- gies for communication, etc.) methods and description of the activities elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - tools – no. of persons, spaces, etc. videos simulation of typical or critical situations.. simulations: putting oneself in the place of the elderly/disabled person. workshops. role-playing. video analysis. case studies group work . tools: computer, video projector, slides, internet, cases to ana- lyse, paperboard, camera, etc. space: room with mobile chairs, video. no. of participants: - max per trainer. recommended duration: - hrs methodological guidance for evaluation (diagnostic, for- mative and final evaluation tools) diagnostic evaluation: brain storming on communication with the users (oral or writ- ten). formative evaluation: observation of activities discussions final evaluation (of learning): questionnaire on theoretical elements. simulations (role-playing, etc.) module – team communication for the quality of life of professionals target initial and in-service training trainers experts in communication (from a psycho-relational point of view) and/or psychology and/or education and/or social work. learning context vocational training education, university, adult training, life- long education purposes and goals purposes elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - facilitating communication in teamwork for pursuing quality of life and preventing burnout. goals - improvement of listening and communication among colleagues; - knowledge and recognition of the main group’s dy- namics; - recognition and management of communication contexts and flows (informal, formal, etc.); - prevention and conflict management. contents non-violent communication/empathetic communication; group dynamics: interactions, roles, etc. information flow management, critical analysis of information, collective decision-making presentation skills use of new technologies for communication methods and description of the activity tools, no. of persons, spaces, etc. videos communicative situation simulations in the team. workshops. role-playing games - role playing. video analysis. case studies - case studies group work. tools: computer, slides, internet, cases to analyse, paper- board, camera, etc. space: room with mobile chairs, video and camera. no. of participants: - max per trainer. recommended duration: - hours methodological guidance for evaluation (diagnostic, formative and final evaluation tools) diagnostic evaluation: brain storming on communication in the work team (oral or written) formative evaluation: observation of activities discussions elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - final evaluation (of learning): questionnaire on theoretical elements. simulations (role play, role-playing, role-playing, etc.) module - the involvement of family and rela- tives target initial and in-service training trainers experts in psycho-relational communication and/or psychology and/or education and/or social work, experts in innovative methodologies. learning context vocational training education, university, adult training, life- long education purposes and goals purposes improving the empowerment of families and communication among the team and towards the families. goals - listening and understanding how to communicate with families in an empathetic manner (cnv); - promoting the training of families and volunteers; - involving the family in the daily life of the organisation (collaborative spaces); - involving the families in social activities; - integrating the volunteer dimension into the daily life of the structure. contents - active listening (rogers, systemic counselling) - empathetic communication (cnv) - organization of training activities for families and/ or volunteers - active involvement of the family in key times of daily life (good practices: discussion groups, alzheimer's coffee mornings, counselling, family in- volvement in programming activities, etc.) - social animation projects with families (good prac- tices) elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - - use of new technologies for communication (skype, etc.) methods and description of the activity tools, no. of persons, spaces, etc. workshops simulations of communicative situations with families role-playing games video analysis case studies testimonials analysis of good practices group work development of training projects for families and/or volunteers tools: computer, video projector, slides, internet, case to ana- lyse, paperboard, camera, etc. space: room with mobile chairs, video, camera. no. of participants: - max per trainer. recommended duration: - hours methodological guidance for evaluation (diagnostic, formative and final evaluation tools) diagnostic evaluation: brain storming on communication with family/neighbours (oral or written) formative evaluation: observation of activities situation analysis discussions final evaluation (of learning): simulations of communicative situations (role-playing, situation settings, etc.). project planning. module empowerment of beneficiaries target initial and in-service training trainers experts in socio-cultural animation, education, innovative methodologies (pet therapy, music therapy, theatre, etc.) learning context elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - vocational training education, university, adult training, life- long education purposes and goals purposes empowerment of beneficiaries objectives - recognition and highlighting of needs, abilities and interests of beneficiaries - raising awareness of the relationships (social, emotional, etc.) among the beneficiaries - involvement of beneficiaries in everyday life - involvement of beneficiaries to put them at the centre of their life plans. contents - empowerment (notion of empowerment and related practical application) - active citizenship (notion of active citizenship and related practical application) - analysis of needs and interests - the person-centred approach - empowerment projects (analysis of good practices) - methodologies and strategies for empowerment - use of new technologies for empowerment methods and description of the activity tools, no. of persons, spaces, etc. lessons with multimedia support case studies in small or large groups workshops analysis of good practices external visits testimonials group work development of projects for the empowerment of users / benefi- ciaries tools: computer, video projector, slides, internet, case to ana- lyse, paperboard, camera, etc. space: room with mobile chairs, video, camera. participants no.: max recommended duration: - h elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - methodological guidance for evaluation (diagnostic, formative and final evaluation tools) formative evaluation project analysis discussions final evaluation (learning): questionnaires on key concepts development of a project module – relationship with the territory and community target initial and in-service training trainers experts in socio-cultural animation, experts in education, psy- chology, social work, socio-cultural mediators, experts in inno- vative methodologies. learning context vocational training education, university, adult training, life- long education purposes and goals purposes integration of the social environment in order to promote active citizenship. goals: - knowledge of the territory and its resources/oppor- tunities - fostering connections between home and institu- tions - developing partnerships with the territory - promoting experiences of social inclusion (disabil- ity, intergenerational dialogue, inter-culturality, etc.) contents mapping key players in the territory (integrated approach) diversity in the community (social inclusion) analysis of the relations between users and territory creation of participatory projects - participatory planning (in- volving other organisations and/or the community) networking (project compares) elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - taking into account the home in territorial anchoring use of new technologies for the territorial network methods and description of activities tools – no. of persons, spaces, etc. lessons with multi-media support case studies in small or large groups discussions in small or large groups analysis of good practice external visits testimonials group work project work tools: computer, video projector, slides, internet, case to ana- lyse, paperboard, etc. space: room with mobile chairs, video, camera. no. of participants: max. recommended duration: - hrs methodological guidance for evaluation (diagnostic, formative and final evaluation tools) formative evaluation: mapping analysis project analysis discussions final evaluation (of learning): drawing up a cartography elaboration of a project module + - development of an educational project target initial and in-service training trainers experts in socio-cultural animation, experts in education, psy- chology, social work, socio-cultural mediators, experts in inno- vative methodologies. learning context vocational training education, university, adult training, life- long education purposes and goals elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - - learning the principles of planning, implementation and evaluation of an educational project. - needs’ analysis for educational interventions in care con- texts. - development of an educational project according to the needs. - assessment of the impact of an educational project. contents - planning of a social educational project - analysis of the situation and needs - definition of objectives - choice of educational methodology methods and description of activities tools – no. of persons, spaces, etc. analysis of projects already developed. group work for project planning. simulations and risk analyses. practical application of the project and impact assessment. methodological guidance for evaluation (diagnostic, formative and final evaluation tools) tools: computer, video projector, slides, internet, cases to ana- lyse, paperboard, etc. space: room with mobile chairs, video, camera. no. of participants: max. recommended duration: - hrs methodological guidance for evaluation (diagnostic, formative and final evaluation tools) formative evaluation: analysis of projects according to given indicators discussions final evaluation (of learning): project analysis analysis of the results of the projects that have been developed. assessment of risk analyses of project ideas. results elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - the training activity was implemented in spain, france, italy and croatia. the results in the different countries involved are being ana- lysed, but here we briefly present the results of the training delivered in italy. this activity involved long-term care or- ganisations and professionals (physicians, nurses, formal carers, social workers). the training lasted hours, of which dedicated to modules , , , and hours of training in the field dedicated to the application of module +. to assess the impact of the training on professionals, the “attitude towards dementia” scale (o’connor, mcfadden, ) was administered at the beginning of the training course (ex-ante) and at the end (ex-post). this scale consists of items and investigates the attitude towards people with alzheimer's or dementia, referring to the knowledge of ad and the feelings towards this kind of problems. the purpose of each item is to express the agreement/disagreement in rela- tion to the statements given, according to a scale from to ( corresponds to totally disagree and to totally agree). the statements express both a favourable attitude (e.g. "it is re- warding to work with people with alzheimer's or dementia") and an unfavourable attitude (e.g. "i'm scared of people with alzheimer's or dementia"); in the latter the improvement was indicated by a decrease in the average value assigned to that item. the following table present the pre-test and post-test re- sults, with a comparison of each item of the scale. table : attitude towards dementia scale: pre-test and post-test means pre-test post-test item m std. m std. t p . it is reward- ing to work with people who have adrd , , , , - , , * . i am afraid , , , , -, , elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - of people with adrd. . people with adrd can be creative. , , , , - , , . i feel confi- dent around people with adrd. , , , , - , , * . i am com- fortable touch- ing people with adrd. . , , , , -, , . i feel uncom- fortable being around people with adrd. , , , , , , . every person with adrd has different needs. , , , , - , , ** . i am not very familiar with adrd. , , , , , , . i would avoid an agi- tated person with adrd. , , , , , , * . people with adrd like having familiar things nearby. , , , , , , . it is impor- tant to know the past history of people with adrd. , , , , - , , * . it is possi- ble to enjoy in- , , , , , , elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - teracting with people with adrd. . i feel re- laxed around people with adrd. , , , , - , , * . people with adrd can en- joy life. , , , , - , , *** . people with adrd can feel when others are kind to them. , , , , - , , ** . i feel frus- trated because i do not know how to help people with adrd. , , , , , , . i cannot imagine caring for someone with adrd. , , , , , , * . i admire the coping skills of people with adrd. , , , , - , , *** . we can do a lot now to im- prove the lives of people with adrd. , , , , - , , * . difficult behaviors may be a form of communication for people with adrd. , , , , - , , ** elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - * p<. . ** p<. . *** p<. . the analysis and comparison of ex-ante and ex-post data indicates a general improvement in the knowledge and atti- tudes of the participants towards people with alzheimer's or dementia. as shown in summary chart , there is an improve- ment in a series of items: of particular relevance: “it is re- warding to work with people who have adrd”, “i feel confi- dent around people with adrd”, “every person with adrd has different needs.”, “i would avoid an agitated person with adrd” (decreased), “it is important to know the past history of people with adrd.”, “i feel relaxed around people with adrd.”, “people with adrd can enjoy life.”, “people with adrd can feel when others are kind to them.”, “i cannot imag- ine caring for someone with adrd.” (decreased), “i admire the coping skills of people with adrd.”, “we can do a lot now to improve the lives of people with adrd”, and “difficult be- haviors may be a form of communication for people with adrd.”. in conclusion, the analysis of the emerging mean and percentage values highlights a positive variation of knowledge attitudes towards the object of the training, both in relation to the items focusing on knowledge of problems related to de- mentia and alzheimer’s and towards the statements concern- ing attitudes towards users affected by these diseases. there- fore, the positive impact of the course is confirmed, in terms of training of the participants. conclusions the project team includes researchers, trainers, social workers but also public authorities in charge of health and so- cial work. this integrated team made it possible to design a training programme that enhances professional competences with innovative perspectives, methods and effective non-phar- macological answers to the needs of the elderly. elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - the training had a positive impact on operators, first of all for its experience-based approach. the experience there- fore represented an opportunity for discussion among opera- tors with different professional skills, within the same struc- ture and who often do not have the time to imagine non-phar- macological alternatives to alzheimer’s and dementia. all the participants in the training also expressed great satisfaction in acquiring competences and skills that can make their care in- tervention much more meaningful and focused on the needs of the elderly. as suggested by literature, this is also a way to prevent operators’ burnout, and ensure the humanisation of the care that they provide on a daily basis. elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - 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( ), culture change in long-term care: participatory action research and the role of the resident, gerontologist. apr ; ( ): – . vikström, s., sandman, p. o., stenwall, e., boström, a. m., saarnio, l., kindblom, k., & borell, l. ( ). a model for implementing guidelines for person-centred care in a nursing home setting. international psychogeriatrics, ( ), - . world health organisation, ( ), the european health re- port : targets and beyond – reaching new frontiers in evidence, who library cataloguing in publication data, copenhagen. elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / ricerche di pedagogia e didattica – journal of theories and research in educa- tion , ( ). issn - elena luppi is assistant professor in educational research at the department of education, university of bologna. contact: elena.luppi@unibo.it elena luppi – training in non-pharmacological approaches to dementia and alzheimer. doi: https://doi.org/ . /issn. - / https://doi.org/ . /issn. - / jmdh- -volunteering-in-dementia-care-----a-norwegian-phenomenologic © söderhamn et al, publisher and licensee dove medical press ltd. this is an open access article which permits unrestricted noncommercial use, provided the original work is properly cited. journal of multidisciplinary healthcare : – journal of multidisciplinary healthcare volunteering in dementia care – a norwegian phenomenological study ulrika söderhamn bjørg landmark , live aasgaard hilde eide olle söderhamn center for caring research – southern norway, faculty of health and sport sciences, university of agder, grimstad, norway; institute of research and development for nursing and care services, municipality of drammen, drammen, norway; faculty of health sciences, buskerud university college, drammen, norway correspondence: olle söderhamn center for caring research – southern norway, faculty of health and sport sciences, university of agder, po box , no- grimstad, norway tel + email olle.soderhamn@uia.no introduction: the number of people suffering from dementia will increase dramatically in the future, and this will be a great challenge and concern for health care services. it is assumed that volunteers will strengthen community health care services more in the future than they do today. aim: the aim of this study was to elucidate lived experiences of working as a volunteer in an activity center with adapted activities for home-dwelling people with early stage dementia. methods: qualitative interviews were implemented in a group of nine female volunteers from an activity center in southern norway. the interviews were recorded, transcribed verbatim, and analyzed with a descriptive phenomenological method. results: volunteering in an activity center for home-dwelling people with early stage dementia was reported to provide experiences of being useful and feeling satisfied with performing a good job. it was an advantage for the volunteers to have had experiences from life in general, but also as a health professional or as being the next of kin of a dementia sufferer. it was important for the volunteers to focus on the dementia sufferer and show caring behavior, and interaction with and the appreciation of the health care professionals were also important. the volunteers were motivated by being able to have influence and participate in the planning of the work, to be a part of the social setting, and to learn. however, for some volunteers it was difficult to adjust to an appropriate role. conclusion: in order to promote volunteering in a caring context, mutual trust and freedom should be emphasized. being conscious of important volunteer characteristics like their experi- ences, knowledge, and caring behavior, as well as a focus on the staff showing appreciation and providing feedback, may be the difference between success and failure. keywords: activity, early stage dementia, phenomenology, voluntary work introduction it is expected that the number of people suffering from dementia will increase dramatically in the future. this will be a challenge, and is a great concern for health care services. day care and residential living for people with dementia will be expensive as the number of sufferers increases. therefore, it is of importance that governments and policymakers have a plan and strategy for being able to meet this future demand. anticipated challenges will include a shortage of staff and a lack of centers offer- ing a social meeting place for people with dementia who live at home – these centers will be important for providing them with activities and meeting their psychosocial needs and should also provide relief for spouses and next of kin. to meet these needs and demands, it will be important to develop centers that can coordinate voluntary dovepress submit your manuscript | www.dovepress.com dovepress o r i g i n a l r e s e a r c h open access to scientific and medical research open access full text article http://dx.doi.org/ . /jmdh.s jo u rn a l o f m u lti d is ci p lin a ry h e a lth ca re d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / mailto:olle.soderhamn@uia.no www.dovepress.com www.dovepress.com www.dovepress.com http://dx.doi.org/ . /jmdh.s journal of multidisciplinary healthcare : work to support the work of health care services. according to fratiglioni et al, social networks are important in the prevention of dementia. therefore, a center staffed by both professionals and volunteers that could offer home-dwelling people with dementia an opportunity for activities and psy- chosocial support would be expected to provide benefits both for the individual and the community. “volunteering” is defined as activities in which time is given freely to benef it another individual, group, or organization. furthermore, volunteering is part of a cluster of helping behaviors that entail more commitment than spontaneous help or assistance, but differ from informal care provided, for example, within the family or among friends. volunteer work is often considered to be beneficial to the volunteers and it has been shown that it enhances their well- being , and also that people with greater well-being invest more time in volunteer service. to a great extent, volunteering is related to member- ships in various types of associations and is often associated with age and other background factors. three types of volunteering were identified in a study with data from developed countries and developing and ex-communist societies: ( ) environmental, peace, third world, welfare, and health; ( ) political parties, local, women, and labor unions; and ( ) religion, youth, sports, professional, and cultural. societies that have a strong emphasis on self-expression and not primarily on survival rank highly on all three types of volunteering and economic development tends to produce increasing levels of volunteering. data on volunteering in the care of dementia sufferers within the health care sector appear to originate mostly from studies carried out in the western world. a study from south carolina regarding social model programs for adults with alzheimer’s disease revealed results from programs provided by volunteers. the offered activities were intended to be meaningful, respectful, and appropriate for the clients. examples of activities, which were evaluated to be in line with the clients’ preferences, included games, exercise, music, and reminiscence work, and also pet therapy. the volunteers could perform many of these activities and also help with preparing lunch, transporting clients, and being “friends” with the clients. a literature review by eggermont and scherder showed, among other things, that an exercise program for people with dementia, performed several times a week, may have positive effects on affective behavior, sleep, and functional ability. participating in an exercise program for people with alzheimer’s disease, led by college students, was shown to provide benefits, including physical fitness, slower cognitive decline, and mood improvement. in addition, using students to deliver such an exercise program was found to be successful with regards to transportation, one-on-one supervision, and motivational support. many volunteers can feel fear when facing people with alzheimer’s disease and this highlights the need for educational programs for volunteers who work among people suffering from dementia. kelsey and laditka found that social programs for people with alzheimer’s disease, provided by both professionals and volunteers who were trained to encounter people with dementia, could offer best practices regarding the clients’ activity preferences. furthermore, it has been found that collaboration between professionals and volunteers can result in mutual support and team strengthening for those involved. voluntary work within health care services is not very common in the nordic countries and, therefore, research regarding volunteers in dementia care is also rare. to our knowledge, no studies have been performed in norway that describe the experiences of volunteers working with physical and social activities among dementia sufferers. the current research into volunteering in dementia care is therefore expected to be of considerable importance, especially given that it is anticipated that volunteers will be important for the strengthening of community health care services in the future. aim the aim of this study was to elucidate lived experiences of working as a volunteer in an activity center with adapted activities for home-dwelling people with early stage dementia. the research question was: what is the phenomenon “volunteering” as narrated by volunteers working in an activity center for home-dwelling people with early stage dementia? methods design in order to study and describe the phenomenon of volunteering in dementia care, a descriptive phenomenological approach was chosen, with interviews of volunteers. phenomenology as a philosophy seeks to understand a phenomenon that can be experienced from the perspective of a conscious person who is undergoing the experience. thus, a “phenomenon” is con- sidered to be that which is present to the consciousness. submit your manuscript | www.dovepress.com dovepress dovepress söderhamn et al jo u rn a l o f m u lti d is ci p lin a ry h e a lth ca re d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com journal of multidisciplinary healthcare : informants volunteers working in a new activity center in southern norway were invited to participate in the study. the activity center offered adapted physical and social activities for home-dwelling people with early stage dementia. to recruit volunteers, the activity center was promoted in the local newspaper. those who volunteered at the activity center were not members of any association, and freely participated as people with an interest in the care of people with dementia. they worked with professionals with specific competence in caring for people with dementia. the volunteers participated in a range of tasks with the individuals with early stage dementia, including doing exercises, performing games and sports, seeing movies, talking, drinking coffee, and singing together. the volunteers also prepared meals, but this was not performed together with the dementia sufferers. when the volunteers started to work at the activity center they were informed about dementia. they were followed up continuously by an appointed person in the activity center and were also regularly invited to information meetings, meetings for planning their activities in the following month, and lessons about dementia. only active volunteers at the activity center were eligible for participating in the study and twelve people (all of whom were women) met this criterion. they were verbally informed about the study by the leader of the activity center and were also given written information together with a written request to participate. three of the eligible volunteers chose not to participate in the study, while the remaining nine agreed to participate and supplied a signed consent form to one of the authors (bl). the nine informants were women with differ- ent professional backgrounds. their ages ranged between and years, and they had been volunteers in the activ- ity center between and months. eight of them had had earlier experiences of voluntary work in different areas such as church, school, sport, or welfare and health. two had had experiences of a relative having dementia. characteristics of the informants are shown in table . the interviews the informants were contacted and interview appointments were made, with all interviews performed in the activity center by two of the authors (bl and la) between april and june . informants were encouraged to narrate one situa- tion they had experienced as successful and one situation they had experienced as not successful when working with the dementia sufferers in the activity center. follow-up questions were used for clarification and elaboration, such as: “can you tell me more about that?,” “what did you mean?,” “how did you think about that?,” and “what did it mean for you?” the interviews lasted up to minutes. they were recorded and transcribed verbatim. data analysis the interview text was analyzed by a descriptive phenom- enological research method according to giorgi’s steps of analysis: . read for sense of the whole. the interview text was read with a phenomenological scientific reduction to obtain a general understanding of the entire description. . determination of meaning units. the text was demar- cated into meaning units – that is, the transcribed text was marked each time there was a significant shift in meaning. . transformation of the informant’s natural attitude expres- sions into the language of health science. each meaning unit, expressed in the informant’s own words, was trans- formed, that is, expressed in language revelatory of the health science aspect of the lived-through experience with respect to the phenomenon studied. by a phenom- enological procedure of free imaginative variation, these transformed meaning units were then synthesized into a consistent statement (a situated structure) about volun- teering. this step is illustrated in table . . writing a general structure. this was done by condensing all situated structures from the interviews into a general structure that was meant to depict the lived experience of the studied phenomenon in the study group. lived meanings are based on an individual experience, but get expressed eidetically (ie, in a general way). the findings of the study are presented as one general struc- ture of the studied phenomenon and six invariant themes. table characteristics of the informants informants age (years) prior role current role childcare worker waitress home economics teacher retired specialist nurse retired office clerk retired physician retired manager manager specialist nurse retired office clerk retired childcare worker retired submit your manuscript | www.dovepress.com dovepress dovepress volunteering in dementia care jo u rn a l o f m u lti d is ci p lin a ry h e a lth ca re d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com journal of multidisciplinary healthcare : ethical considerations the researchers were guided by ethical standard principles and the intentions of the declaration of helsinki when they designed and performed the study. confidentiality was assured and the informants had the opportunity to withdraw without declaring their reasons. since no questions were asked in the interviews about the informants’ own health status or about the health status of the people with dementia, there was no obligation in norway to get approval from an ethical committee. the study was, however, reported to the norwegian social science data services (ref ) to confirm the correct handling and storage of collected data. results general description of volunteering volunteering in an activity center for home-dwelling people with early stage dementia was reported to provide experi- ences of being useful and feeling satisfied with performing a good job. it was an advantage for the volunteers to have had experiences from life in general, but also as a health profes- sional or as being the next of kin of a dementia sufferer. it was important for the volunteers to focus on the dementia sufferer and show caring behavior, and interaction with and the appreciation of the health care professionals were also important. the volunteers were motivated by being able to have influence and participate in the planning of the work, to be a part of the social setting, and to learn. however, for some volunteers it was difficult to adjust to an appropriate role. being useful and feeling satisfied the volunteers had the feeling that they were of help to the people with dementia and had positive experiences when they interacted with them in the activity center or in connection with different outdoor activities such as games, sports, and walking. that they performed a good job was acknowledged table examples of the transformation of the informant’s natural attitude expressions into the language of health science interview text demarcated into a meaning unit transformation of the meaning unit themes “now i have some experience from the coordination center for voluntary services, because i have been active there for – years … yes, i have some experience of what it means … we volunteers, yes and others, too, of course, should help them [the dementia sufferers] to keep their self-respect, as i see it. i think all shall take them seriously when they are asking something and you shall expect to get a proper answer on the question you have” volunteers with experience from voluntary work should help the dementia sufferers to keep their self-respect. all of them should be expected to be encountered seriously prior experiences “i try to be conscious about not to put words in the mouth of them [the dementia sufferers], and we have had training in the activity center about how we shall handle and behave, so we do not override them by putting words in the mouth on them or push them to answer” she tries to be conscious about not putting words in the mouths of the dementia sufferers or pushing them to answer caring behavior by expressions of gratitude or a personal positive response from the target people, who also could show confidence in the volunteers. as a result, the volunteers perceived that their volunteering filled a need and they felt committed to the community work. furthermore, the volunteers felt that they did a good job and expressed feelings of satisfaction. it was a positive experience to be able to give something to other people, and the volunteers felt that they got back more than they gave. as a result of volunteering, life was experienced as more meaningful, and feeling useful and doing meaningful things resulted in a sensation of well-being. moreover, when the people with dementia were satisfied, the volunteers were satisfied, too. prior experiences when volunteers met people with dementia in the activity center it was considered valuable if those volunteers had had different life experiences, some experience with other volun- tary work, or if they had a family member with dementia. this could make it easier to help those suffering from dementia keep their self-respect as it meant that volunteers would take them seriously. people who had been health professionals or who had experiences, interest, or knowledge of the care of older people – especially individuals with dementia – were more inclined to become volunteers in the activity center. the skills gained from such experiences were important to feeling safe in the role, especially when talking about dementia to the family of those suffering from the disease. caring behavior a goal for the volunteers was to encounter the people with dementia as they themselves wanted to be met. the volunteers reported that they felt they should speak to the people, not put words in their mouths, and not push them to answer questions. the focus should be on the dementia sufferer, and submit your manuscript | www.dovepress.com dovepress dovepress söderhamn et al jo u rn a l o f m u lti d is ci p lin a ry h e a lth ca re d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com journal of multidisciplinary healthcare : the volunteers should not give themselves a place of honor. it was also important for the volunteer to be nice and friendly, a listener, and calm, but also to be able to give a hug. the volunteers wanted to create a pleasant atmosphere and ensure that the people with dementia in the center had a good day and that they felt safe and looked after. there was a scheduled program of meaningful activities that both volunteers and dementia sufferers participated in. the volunteers prepared meals without any assistance from the dementia sufferers. besides the organized activities, the volunteers found it important to sit with the dementia sufferers, enjoying their company, and to talk with them as they would with anyone else (doing this around a table in connection to meals, for example). talking face to face with an individual was also considered to be important. group and one-on-one conver- sations were believed to produce good social manners and demonstrate that the dementia sufferer was being treated with respect. it was also mentioned that the volunteer had to be aware of the “chemistry” between the dementia sufferers and themselves, and ensure that their relationship was good. if the chemistry was not good, the volunteers felt that it would be better not to have a one-on-one conversation. interaction with and appreciation from the staff a major positive experience of being a volunteer in the activity center was meeting with people with dementia. additionally, being seen, heard, and affirmed by the staff at the center was also important. the volunteers felt welcome when they arrived at the center because the staff had a positive attitude toward them. furthermore, the staff were generous in their praise of volunteers, which resulted in the volunteers feeling that they had had satisfying days at the center. the staff were acknowledged by the volunteers to be good leaders and professionals. interactions between the staff and volunteers were good, with the staff providing informa- tion, as well as advice and support that further motivated the volunteers. the staff were also acknowledged as being good at celebrating memorable days and occasions, which made the days pleasant for the dementia sufferers. motivating circumstances it was motivating for the volunteers to be invited to partici- pate in meetings that were arranged for the volunteers once a month. in these meetings, they had the opportunity to influ- ence their own working plan and reported that the staff were flexible and that their own needs were met. the social aspect of volunteering was another motivating factor – the volunteers reported that working together was a positive experience and it was useful to exchange experiences. it was also positive that they were invited to courses and seminars, and were given the opportunity to learn more about dementia and what it is like to live with such a disease. difficulties in adjusting to the role one of the volunteers gradually realized that she did not have the personal resources to work with this particular target group, reporting that to be a volunteer she had to possess a resource “inside” herself, and since she felt sadness when she saw the people with dementia, their spouses, and their struggles, she could not find the inner strength that she felt she needed to do the work. she could not avoid thinking of the people with dementia when she was at home, so she decided to give up working as a volunteer in the activity center. the volunteers also found it difficult to perform some tasks, such as doing everything necessary to cook dinner without any assistance. it was sometimes the case that only one volunteer was available to work in the kitchen, which meant that this one person found it hard to do a good job, and, as a result, they felt that there was a need for more volunteers. despite the fact that having experience as a health care professional was considered valuable when doing some tasks as a volunteer in the center, this experience was also found to have its disadvantages. volunteers who were for- mer health care professionals found that they did not have other professional colleagues or a paid role. this meant that these volunteers had professional knowledge that they were providing for free and were aware that some of the other volunteers did not all have the resources necessary to be a volunteer for people with dementia. some volunteers with this background found it difficult to adjust to an appropriate role as a volunteer. discussion the aim of this study was to elucidate lived experiences of working as a volunteer in an activity center with adapted activities for home-dwelling people with early stage dementia. overall, the informants reported that their experience of being volunteers in an activity center for people with early stage dementia was positive. they felt that there was a need for their voluntary contribution and, as a result, were committed in this type of community work. life became more meaningful when they helped those who were less fortunate and, by giving something to the dementia sufferers, they got much more back. these seem to be motivating factors that are grounded in trust. submit your manuscript | www.dovepress.com dovepress dovepress volunteering in dementia care jo u rn a l o f m u lti d is ci p lin a ry h e a lth ca re d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com journal of multidisciplinary healthcare : they met individuals with dementia and treated them as they themselves would like to be treated, that is, according to the golden rule. this could be expressed according to sartre in a phenomenological way – that is, the volunteers were seen and to some extent affirmed by the people with dementia, and their being-for-others depended on the values and situations of the dementia sufferers, that is, on their freedom. the individuals with dementia promoted an awareness among the volunteers that they were objects for others. although the people with dementia may have had less freedom than the volunteers, because of their disease, the volunteers were dependent on the freedom of the dementia sufferers, and they were constituted as volunteers for the individuals with dementia. , being, seen as a fundamental, motivating, and critical issue, was also reflected in the interaction with and appreciation from the staff. the volunteers’ being was dependent on the essential being of the others, that is, the people with dementia and also the staff. being-for-others appeared to be a condition for being- for-myself for the volunteers. volunteering gave the volunteers’ lives meaning and contributed to their identity, a finding that is consistent with the results of a study by warburton and mclaughlin on older women as informal volunteers. their informal caring provided them with many benefits, such as a personal strong role identity as aging caregivers, as well as helping the com- munities to be healthier and better to live in. this is also emphasized in other studies that show that volunteering enhances well-being, health, self-esteem, and life satisfac- tion , for the volunteers. it has been shown that volunteering is even associated with delayed mortality in older people. it was obvious in this study that professional caregivers had some difficulties in adapting to the role of volunteer. professional knowledge, health care ethics, routines, and rituals in the health care sector and other issues may have been serious obstacles preventing former health care profes- sionals taking on volunteer roles that in some ways were subordinate. in order to take advantage of these volunteers’ knowledge and skills, staff should speak with volunteers and provide personal evaluations, and try to connect them more closely to the services in the activity center. a better understanding of volunteer characteristics and motivations will promote a more successful relationship between volun- teers and staff and one of these important characteristics is having had a former professional role. if volunteering is to be a productive activity for aging people, attention needs to be paid to well-known barriers such as volunteer work that is considered boring or an ineffective use of the volunteers’ skills and experiences. since even people who are used to being around people with dementia may find it very difficult to work with people with the disease, it should be recommended that all volunteers receive proper training. in the present study, the volunteers were offered lessons about dementia, communication, coping, grief, and loss, as well as access to resources in the municipality related to the disease. however, it could be argued that the volunteer’s attitude and personal qualities may be more important than knowledge and skills. as reported in the study by warburton and mclaughlin, all informants in this study were women, and caring behaviors were a focus. the present study is limited in that no male volunteers were included, thus the volunteers’ experiences may have been narrated differently if informants from both sexes had participated. the rigor of this study is reflected in the systematic implementation of a descriptive phenomenological method. in the analyses, previous knowledge and theories about the phenomenon in focus were bracketed. although this phenomenological reduction is almost impossible to fully implement, because we are human beings in the world with all its influences, we have tried to be conscious of it. by using a phenomenological research method grounded in phenomenological philosophy, searching for key aspects of the phenomenon in focus, and applying the phenomeno- logical reduction, the basis for validity in a phenomenological sense is present. the same meanings occurred consistently in the different interviews, so reliability of the findings was also obtained. the informants were considered to have sufficient expe- riences as volunteers in the activity center for people with early stage dementia to deliver varied and rich narratives of volunteering. this also means that the informants provided highly credible data. the general description of volunteering in this context should not be considered as complete, partly because possible male experiences of the phenomenon may be lacking. nevertheless, it seems reasonable to transfer the findings to similar contexts. “volunteering” is a term that embraces many quite dispa- rate activities and the phenomenon has been studied within various scientific traditions. it has been considered to be important for the development of cohesion and democracy in civilized societies. it is important to study volunteering within the health and caring sciences and, especially, to see it in a lifeworld perspective. there are already a number of subjectivist and behaviorist theories that attempt to explain volunteering, and many rigorous quantitative studies , describe the phenomenon, its constituents, and influences. submit your manuscript | www.dovepress.com dovepress dovepress söderhamn et al jo u rn a l o f m u lti d is ci p lin a ry h e a lth ca re d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / www.dovepress.com www.dovepress.com www.dovepress.com journal of multidisciplinary healthcare publish your work in this journal submit your manuscript here: http://www.dovepress.com/journal-of-multidisciplinary-healthcare-journal the journal of multidisciplinary healthcare is an international, peer- reviewed open-access journal that aims to represent and publish research in healthcare areas delivered by practitioners of different disciplines. this includes studies and reviews conducted by multidisciplinary teams as well as research which evaluates the results or conduct of such teams or healthcare processes in general. the journal covers a wide range of areas and welcomes submission from practitioners at all levels, from all over the world. the manuscript management system is completely online and includes a very quick and fair peer-review system. visit http://www.dove- press.com/testimonials.php to read real quotes from published authors. journal of multidisciplinary healthcare : however, to let people narrate their lived experiences of the phenomenon in a special context in their own words may contribute with new knowledge. this knowledge can then be transferred to other similar settings and also further elaborated. in conclusion, the lived experience of volunteering in an activity center for home-dwelling people with early stage dementia as narrated by the nine women in this study was a phenomenon with both positive and negative sides. volunteering reflected relational aspects of being together, practical views, and freedom, and was a phenomenon experienced in relation to the whole context and not only to the group of individuals with early stage dementia. mutual trust and freedom should be emphasized to promote volunteering in a caring context. a conscious approach to important volunteer characteristics, like their experiences, knowledge, and caring behavior, as well as a focus on the staff showing appreciation and providing feedback, may be the difference between success and failure. further research is needed and this should focus on gender aspects as well as the dementia sufferers’ and their next of kin’s views of the phenomenon. acknowledgment the informants and the staff at the activity center are grate- fully acknowledged. disclosure the authors report no conflicts of interest in this work. references . ferri cp, pronce m, broday h, et al. global prevalence of dementia: a delphi consensus study. lancet. ; : – . . report no. ( – ) to the storting. long term care – future challenges. oslo: ministry of health and care services. . fratiglioni l, wang h-x, ericsson k, maytan m, winblad b. influence of social network on occurrence of dementia: a community-based longitudinal study. lancet. ; : – . . wilson j. volunteering. annu rev sociol. ; : – . . thoits pa, hewitt ln. volunteer work and well-being. j health soc behav. ; ( ): – . . inglehart r. modernization and volunteering. in: dekker p, halman l, editors. the values of volunteering. cross-cultural perspectives. new york, ny: kluwer academic/plenum publishers; : – . . kelsey sg, laditka sb. evaluating best practices for social model programs for adults with alzheimer’s disease in south carolina. home health care serv q. ; ( ): – . . eggermont lp, scherder ej. physical activity and behaviour in dementia. dementia. ; ( ): – . . arkin sm. student-led exercise sessions yield signif icant f itness gains for alzheimer’s patients. am j alzheimers dis other demen. ; ( ): – . . robinson km, clemons jw. respite care – volunteers as providers. j psychosoc nurs ment health serv. ; ( ): – . . pritchard ej, dewing j. a multi-method evaluation of an indepen- dent dementia care service and its approach. aging ment health. ; ( ): – . . jeppsson grassman e. på jakt efter den frivilliga sektorns roll inom nordisk äldreomsorg. forskning, gestaltningar och perspektiv [in search of the voluntary sector’s role in nordic elderly care. research, construc- tion and perspective]. in: szebehely m, editor. Äldreomsorgsforskningen i norden. en kunskapsöversikt [elderly care research in the nordic countries. a knowledge review]. temanord : . copenhagen: nordiska ministerrådet; : – . swedish. . giorgi a. the descriptive phenomenological method in psychology. a modified husserlian approach. pittsburgh, pa: duquesne university press; . . beauchamp tl, childress jf. principles of biomedical ethics. th ed. new york, ny: oxford university press; . . world medical association declaration of helsinki. ethical principles for medical research involving human subjects. seoul: world medical association; . available from: http://www.wma.net/ en/ publications/ policies/b /index.html. accessed january , . . the bible. matthew : . . sartre j-p. being and nothingness. an essay in phenomenological ontology. london: routledge; . . morris kj. sartre. oxford: blackwell publishing; . . harris ahs, thoresen ce. volunteering is associated with delayed mortality in older people: analysis of the longitudinal study of aging. j health psychol. ; ( ): – . . warburton j, mclaughlin d. doing it from your heart: the role of older women as informal volunteers. j women aging. ; ( ): – . . warburton j, paynter j, petriwskyj a. volunteering as a productive aging activity: incentives and barriers to volunteering by australian seniors. j appl gerontol. ; ( ): – . . ellis j. you’ve got a friend. nurs older people. ; ( ): . . merleau-ponty m. the phenomenology of perception. london: routledge and kegan paul; . . söderhamn o. aspects of validity and reliability in a phenomenological sense. theoria j nurs theory. ; ( ): – . . dekker p, halman l, editors. the values of volunteering. cross-cultural perspectives. new york, ny: kluwer academic/plenum publishers; . submit your manuscript | www.dovepress.com dovepress dovepress dovepress volunteering in dementia care jo u rn a l o f m u lti d is ci p lin a ry h e a lth ca re d o w n lo a d e d f ro m h tt p s: // w w w .d o ve p re ss .c o m / b y . . . o n -a p r- f o r p e rs o n a l u se o n ly . powered by tcpdf (www.tcpdf.org) / http://www.dovepress.com/journal-of-multidisciplinary-healthcare-journal http://www.dovepress.com/testimonials.php http://www.dovepress.com/testimonials.php http://www.wma.net/en/ publications/ policies/b /index.html http://www.wma.net/en/ publications/ policies/b /index.html www.dovepress.com www.dovepress.com www.dovepress.com www.dovepress.com 	publication info : 	nimber of times reviewed: touch interactive system design with intelligent vase of psychotherapy for alzheimer’s disease article touch interactive system design with intelligent vase of psychotherapy for alzheimer’s disease tinglan lin and jin cao ,* shanghai institute of design, academy of art, shanghai , china; tingting @gmail.com industrial design, rhode island school of design, providence, ri , usa * correspondence: caojinscholar@gmail.com received: june ; accepted: july ; published: august ���������� ������� abstract: this paper introduces the concept of an intelligent vase that combines the cultivation of plants with psychotherapy for the alzheimer’s adjuvant therapy (from now on, referred to as ad) of patients. recall (the name of intelligent vase which defined by this paper), which includes hardware and software applications, as well as a unique hand gesture interaction method, is able to collect patients’ hand gestures and play photos, to remind patients of the plant’s growth status. to evaluate our conceptual system, we created a preliminary prototype. we conducted an experiment with leap motion. this project tries to explore a kind of interaction method by cultivating plants to simulate cognitive training activities, to stimulate memories through family pictures, to slow down the cognitive decline from ad, to incorporate non-drug intervention into the family life of ad patients, to reduce the expenditure, time, and energy costs, and to improve the quality of life of patients and their families. keywords: interaction design; hand gesture interaction; alzheimer’s disease; psychotherapy . introduction alzheimer’s disease (from now on referred to as ad) is a disease with a large population and no effective therapeutic drugs but has non-drug interventions. according to the data of the world health organization, the number of dementia patients worldwide continues to increase, especially in the elderly and those countries facing a demographic transition. in , the total number of dementia patients in the world was about . million, which is expected to double every years, reaching . million in and reaching . million in . the number of new dementia patients is close to . million per year, which means that a new dementia patient appears every s [ ]. as there is no effective treatment for alzheimer’s disease, the clinical use of these four drugs can only partially improve the patient’s condition [ ]. therefore, while new drugs are urgently needed, non-pharmacological interventions are playing an important part in individualized treatment options [ ]. caring for other living things can succeed where medications fail. bill thomas, md, created a garden of eden, incorporating animals, plants, and children in the culture of a nursing home. helping to care for animals gives residents a sense of purpose. it gives residents an opportunity to balance the care they receive with ways they can give care. this is an opportunity to “give back” to someone or something, fulfilling the human need to be needed. this plan shows a percent reduction in the daily drug cost per resident and a percent cut in the turnover of nurse aides [ ]. nostalgic therapy is a method of psychological treatment. it is one of the most commonly used methods in non-pharmaceutical interventions. it mainly reminds people of past events, emotions and thoughts through various tangible prompts (such as photos, music, scenes, videos, etc.,) to improve designs , , ; doi: . /designs www.mdpi.com/journal/designs http://www.mdpi.com/journal/designs http://www.mdpi.com https://orcid.org/ - - - http://www.mdpi.com/ - / / / ?type=check_update&version= http://dx.doi.org/ . /designs http://www.mdpi.com/journal/designs designs , , of patients’ memory function [ ]. on the basis of improving diet, moderate exercise, and safe nursing intervention, it helps patients to achieve happiness and improve quality of life. however, most of the psychotherapy interventions, such as nostalgic therapy, are carried out in hospitals, as they require professional guidance and planning that usually take eight weeks or more. nostalgic therapy takes significant investments of human resources, material resources and time. assuming that psychotherapy can be replaced by products with special interactions that are integrated into family interventions, it will greatly help improve the life quality of patients and their families. before proposing a touch interaction system to assist the cognitive rehabilitation training of alzheimer’s disease, the authors of this paper have conducted comprehensive research on recent gesture recognition technology [ ]. depending on whether the body is touching the device, gesture recognition can be divided into contact recognition and vision-based hand gesture recognition. compared with contact recognition, vision-based hand gesture recognition has the advantage of convenient interaction and has wide adaptability. sensors are necessary for collecting row gesture data; sensor technology can be divided into d-based approaches and d-based approaches, the latter showing some limitations in hand gesture interaction. there are three popular d depth sensors with d-based sensing technology: kinect . , leap motion, and time-of-flight sensors (tof). kinect . is able to detect and track the human body’s skeleton joints quickly, but it focuses on the whole body, and the depth sensor of kinect accuracy is not high at mm. a tof camera is a widely used and low-cost depth measurement device, which is more accurate than kinect . , and has been used to generate the d point cloud and helped in recognizing complex hand trajectory gestures, where the accuracy of recognition can be up to mm. however, leap motion, which was released in , has the highest recognition accuracy at . mm, and is able to track hand and finger gesture accurately. considering the importance of gesture recognition accuracy to the system proposed in this paper, the sensor adopted in the system design is leap motion. this paper proposed recall (the name of intelligent vase which defined by this paper, figure shows an effect display of recall) and a touch interactive system based on intelligent vase of psychotherapy for alzheimer’s disease, hoping to help ad patients from three aspects: (i) find alternatives to nostalgic therapy which can be handled easily. (ii) integrate non-drug intervention of ad into family life, reducing the expenditure, time, energy cost of treatment as well as improving the life quality of patients and their families. (iii) cultivate plants to enhance patients’ sense of responsibility and presence. designs , , x for peer review of intervention, it helps patients to achieve happiness and improve quality of life. however, most of the psychotherapy interventions, such as nostalgic therapy, are carried out in hospitals, as they require professional guidance and planning that usually take eight weeks or more. nostalgic therapy takes significant investments of human resources, material resources and time. assuming that psychotherapy can be replaced by products with special interactions that are integrated into family interventions, it will greatly help improve the life quality of patients and their families. before proposing a touch interaction system to assist the cognitive rehabilitation training of alzheimer’s disease, the authors of this paper have conducted comprehensive research on recent gesture recognition technology [ ]. depending on whether the body is touching the device, gesture recognition can be divided into contact recognition and vision-based hand gesture recognition. compared with contact recognition, vision-based hand gesture recognition has the advantage of convenient interaction and has wide adaptability. sensors are necessary for collecting row gesture data; sensor technology can be divided into d- based approaches and d-based approaches, the latter showing some limitations in hand gesture interaction. there are three popular d depth sensors with d-based sensing technology: kinect . , leap motion, and time-of-flight sensors (tof). kinect . is able to detect and track the human body’s skeleton joints quickly, but it focuses on the whole body, and the depth sensor of kinect accuracy is not high at mm. a tof camera is a widely used and low-cost depth measurement device, which is more accurate than kinect . , and has been used to generate the d point cloud and helped in recognizing complex hand trajectory gestures, where the accuracy of recognition can be up to mm. however, leap motion, which was released in , has the highest recognition accuracy at . mm, and is able to track hand and finger gesture accurately. considering the importance of gesture recognition accuracy to the system proposed in this paper, the sensor adopted in the system design is leap motion. this paper proposed recall (the name of intelligent vase which defined by this paper, figure shows an effect display of recall) and a touch interactive system based on intelligent vase of psychotherapy for alzheimer’s disease, hoping to help ad patients from three aspects: (i) find alternatives to nostalgic therapy which can be handled easily. (ii) integrate non-drug intervention of ad into family life, reducing the expenditure, time, energy cost of treatment as well as improving the life quality of patients and their families. (iii) cultivate plants to enhance patients’ sense of responsibility and presence. to test the practicability of this design, two practices were carried out in this paper (i) to simulate the functions of the hardware through arduino and multiple sensors; (ii) to define interactive gestures assisted by leap motion. research results: (i) this paper proposes a kind of touch interaction system to assist the cognitive rehabilitation training of alzheimer’s disease, which can provide a referential concept for the product design of this group. (ii) for the first time, this paper proposes to simplify the gesture in human– computer touch interaction according to the characteristics of cognitive decline in patients with alzheimer’s disease, which can provide a reference for future gesture interaction in special groups. figure . recall (the name of intelligent vase which defined by this paper) product effect display. figure . recall (the name of intelligent vase which defined by this paper) product effect display. to test the practicability of this design, two practices were carried out in this paper (i) to simulate the functions of the hardware through arduino and multiple sensors; (ii) to define interactive gestures assisted by leap motion. research results: (i) this paper proposes a kind of touch interaction system to assist the cognitive rehabilitation training of alzheimer’s disease, which can provide a referential concept for the product design of this group. (ii) for the first time, this paper proposes to simplify the gesture in human–computer designs , , of touch interaction according to the characteristics of cognitive decline in patients with alzheimer’s disease, which can provide a reference for future gesture interaction in special groups. . related work faced with the large and expanding group of patients with alzheimer’s disease, most devices or software techniques are concentrated on tracking location, the surveilling of patient’s status, helping with daily activities, and so on, but design of psychotherapy is still lagging. there are no devices to help people recall their families or friends. tracking location: for example, ( ) gps shoe: this consists of a tracking device in the patient’s right shoe. it is rechargeable and helps the caregiver track the patient easily within min through the website [ ], but the patient may remove their shoe on their way, due to an alzheimer’s attack or may not wear that shoe as the patient does not realize what they are doing; ( ) project saver, which tracks the patient’s location from sensors tied on the patient’s ankle, but the patient may throw/lose the device off their ankle or it may disturb their ankle and make them irritated. ( ) blue water security: a watch, which has a sensor fixed in that gives an alarm when the patient crosses a certain distance, and also has a panic button to be used in case of emergency. however, this device is very expensive and is not affordable for the everyday consumer. it has a month to month contract and no long-term commitments. surveillance of patient’s status: the environment-aware system developed at fraunhofer portugal, a remote monitoring system for patients suffering from alzheimer’s disease, comprises a device able to monitor the environment temperature and humidity, the patient’s location using gps, as well as the patient’s movements, including falls. the device sends this information to the caregiver, where it is stored in a database developed in this work [ ]. however, patients may remove wearable electronic devices or may not wear that device. help with daily activities: ( ) jasvinder and ashish proposed algorithmic music generation for the stimulation of musical memory in alzheimer’s, playing music whenever a patient performs daily activities and can be replayed to assist in recollection of memories of that event. however, there are no supported tangible devices for this therapy [ ]. ( ) tangible virtual kitchen: thuong, déborah, and paul presented a tangible virtual kitchen system for the rehabilitation of alzheimer’s patients; this system utilizes sifteo cubes and supports intuitive and natural user interactions to improve motor skill rehabilitation for everyday kitchen tasks. however, the defined game lacks a daily task and reward mechanism, which rarely gives users a sense of long-term value, and is less likely to be stuck to in the long run [ ]. cognitive stimulation therapy: carolina, esther, miguel, and ana proposed a full design, implementation, and validation of an e-health service in order to improve the community health care services for patients with cognitive disorders. it allows parkinson’s disease patients to benefit from the possibility of doing cognitive stimulation therapy (cst) at home by using a familiar device such as a tv set. this service provides therapists with the ability to conduct follow-up of therapy sessions via the web, benefiting from greater and easier control of the therapy exercises performed by patients and allowing them to customize new exercises in accordance with the particular needs of each patient. however, this system is aimed at people with parkinson’s disease. although the author thinks only a small change is needed, the system could be useful for patients with alzheimer’s or mild cognitive impairment, as research on alzheimer’s disease is ongoing and there is no relevant completed system [ ]. as defined, no psychotherapy intervention is presently available for patients with alzheimer’s. however, psychotherapy interventions have significant positive effects on patients and their families. however, psychotherapy will increase the cost of care, human resources, and financial resources, which could be considered to replace device or software techniques with similar functions. designs , , of . concept and inspiration recall seeks an interaction that combines cultivating plants and psychotherapy. patients can conduct daily cognitive training by looking at family photos. besides, by taking care of the plants, patients may gain a sense of value and responsibility. the inspirations come from the champa flower (a poem of rabindranath tagore, indian writer, poet, and social activist). the poem writes “if i became a champa flower, just for fun, growing on a branch high up that tree, laughing and swaying in the wind, dancing on the new leaves, would you know me, mother?” this is a hypothetical scene—if a child becomes a champa flower and plays hide-and-seek with his mother, it demonstrates the fun of the family; most family pleasures come from exciting activities, such as hide-and-seek. the design of interaction indoors of recall is also related to hide-and-seek. japanese human puppets are another inspiration source. most japanese puppets imitate the faces, expressions, and hairstyles of lovely children, making users have the impulse to touch and caress them. the sketch below illustrates the design process for this design goal with complexity; the basic design concept and ideas can be seen from figure . designs , , x for peer review of the inspirations come from the champa flower (a poem of rabindranath tagore, indian writer, poet, and social activist). the poem writes “if i became a champa flower, just for fun, growing on a branch high up that tree, laughing and swaying in the wind, dancing on the new leaves, would you know me, mother?” this is a hypothetical scene—if a child becomes a champa flower and plays hide-and-seek with his mother, it demonstrates the fun of the family; most family pleasures come from exciting activities, such as hide-and-seek. the design of interaction indoors of recall is also related to hide-and-seek. japanese human puppets are another inspiration source. most japanese puppets imitate the faces, expressions, and hairstyles of lovely children, making users have the impulse to touch and caress them. the sketch below illustrates the design process for this design goal with complexity; the basic design concept and ideas can be seen from figure . figure . sketch with design process. . expert interview we went to nanchang first affiliated hospital of nanchang university (nanchang, jiangxi province, china) and conducted interviews including patients, caregivers ( were employed and were relatives), attending doctors and a nursing supervisor. when asked, “are you troubled and distressed by memory loss?”, nine patients expressed agreement; one patient kept silent due to a language disorder (a complication with alzheimer’s); six employers said the patient’s memory decline forced them to be vigilant and long-term care made them feel very tired; four relatives expressed beyond exhaustion from nursing, and most importantly, spiritual pain, especially from close relatives. the following interview is from a relative caregiver who was very close to the patient: yuxuan, son of mr. zhang (alzheimer’s), is years old and an art teacher. he said: “although my dad has forgotten me, i will never forget him.” “it pains me that he’s losing memory of who i am gradually, but when i show him some old pictures of me as a child, it’s comforting when he suddenly remembers something.” after patient interviews, we conducted face-to-face interviews with dr. li, chief physician of the department of psychiatry, and dr. xu, chief physician of the department of integrated traditional chinese and western medicine. the interviews mainly focus on three questions, following along with their respective expert answers (the repeated answers have been integrated): q . is the effect of psychological intervention on the rehabilitation or remission of alzheimer’s disease considerable? correct psychological treatment and careful psychological care are more important than drug treatments for alzheimer’s patients, especially in the early stage of the disease. if patients are given timely psychological counseling and positive encouragement and support, the patient’s condition is figure . sketch with design process. . expert interview we went to nanchang first affiliated hospital of nanchang university (nanchang, jiangxi province, china) and conducted interviews including patients, caregivers ( were employed and were relatives), attending doctors and a nursing supervisor. when asked, “are you troubled and distressed by memory loss?”, nine patients expressed agreement; one patient kept silent due to a language disorder (a complication with alzheimer’s); six employers said the patient’s memory decline forced them to be vigilant and long-term care made them feel very tired; four relatives expressed beyond exhaustion from nursing, and most importantly, spiritual pain, especially from close relatives. the following interview is from a relative caregiver who was very close to the patient: yuxuan, son of mr. zhang (alzheimer’s), is years old and an art teacher. he said: “although my dad has forgotten me, i will never forget him.” “it pains me that he’s losing memory of who i am gradually, but when i show him some old pictures of me as a child, it’s comforting when he suddenly remembers something.” after patient interviews, we conducted face-to-face interviews with dr. li, chief physician of the department of psychiatry, and dr. xu, chief physician of the department of integrated traditional chinese and western medicine. the interviews mainly focus on three questions, following along with their respective expert answers (the repeated answers have been integrated): designs , , of q . is the effect of psychological intervention on the rehabilitation or remission of alzheimer’s disease considerable? correct psychological treatment and careful psychological care are more important than drug treatments for alzheimer’s patients, especially in the early stage of the disease. if patients are given timely psychological counseling and positive encouragement and support, the patient’s condition is expected to recover. for other patients whose memory, understanding, abstract thinking and other abilities that even have been lost and cannot be completely recovered, the continuous deterioration of the condition can at least be avoided with appropriate psychological treatment, so that the patient’s behavior can be maintained at a relatively stable level. q . does looking at photos have any effects on cognitive decline in alzheimer’s patients? looking at photos is one of the treatments of memory therapy. looking at photos of patients in the past, especially those from a long time ago, has a certain function of arousing memories. therapists often show patients photos of the past that evoke positive emotions such as happiness, beauty, pride, etc. looking at photos from the past can give patients the satisfaction of remembering the past, helping them reconfirm themselves and integrate their life. the most immediate effect is that recalling old photos can stimulate the residual function of the brain, alleviate the symptoms of dementia, and prevent the deterioration of dementia. q . is it possible to involve patients in psychological intervention through simple devices without the involvement of a therapist? it is possible to implement the method of reminiscence therapy by means of a machine, such as adding the event of looking at photos to match the memory journal; petting therapies, such as having patients care for plants (which are less risky than animals) or using robots instead, can improve patients’ sociability. based on the interviews with patients, caregivers, and doctors, it can be concluded that: ( ) memory loss is a matter of great concern in alzheimer’s disease. it is harmful to the mental health of both the patient and the caregiver; ( ) the effect of psychological intervention on the rehabilitation and remission of alzheimer’s disease is considerable; ( ) looking at photos from the past has a positive effect on alzheimer’s disease; ( ) instead of including therapists in psychotherapy, reminiscence therapy (like looking at past photos) or pet therapy on machines or devices might be considered. . users segmentation according to a report from the alzheimer’s association in , one in people age and older ( percent) has alzheimer’s dementia. almost two-thirds of americans with alzheimer’s are women. therefore, most of the target users are older than , especially women. patients with children and good parent–child relationships are the best users of the system. the system can be used as a good psychological treatment auxiliary device to help patients alleviate memory decline, and alleviate annoyance from both their children and themselves. although, being older does not mean that a person has children or has happy memories with children. for the following three type of users: (i) people without children; (ii) people with fraught or damaged relationships with their children; (iii) people who have experienced painful situations around children (infertility, miscarriage, child death, and so on). recall aims to help patients recall happy experiences from the past by looking at old photos (including their best friends, favorite pets, pleasant trips, and past moments of glory, and so on). there is no need for child-related content, and for (ii) and (iii), child-related content should be avoided. designs , , of . interaction the patient can interact with recall through six simple gestures. the oled (organic light- emitting diode, or organic electroluminescence display) screen in the vase will roll and play pictures of the family and friends. figure shows the flow diagram of display.designs , , x for peer review of figure . the flow diagram of display. there are six movements in this interaction: (i.) when hands move close to recall within mm, the door opens and power turns on. (ii.) when hands move away from recall outside of mm, the door closes and power turns off (figure shows the display of interaction ii.). figure . interaction demonstration. (iii.) when the user waves their hand to recall, it will output a greeting (a pre-recorded voice from families or friends). (iv.) when the index finger swipes left or right, it goes back to the previous photo or forward to the next photo. (v.) when the index finger clicks forward quickly in the air, recall will output a voice diary with the current photo (if the family member or friend records this voice diary while uploading this photo). (vi.) recall will supervise the growth status of the plants, and remind the patients by outputting the pre-recorded family voice in case of no water or light. figure . the flow diagram of display. there are six movements in this interaction: (i) when hands move close to recall within mm, the door opens and power turns on. (ii) when hands move away from recall outside of mm, the door closes and power turns off (figure shows the display of interaction ii). (iii) when the user waves their hand to recall, it will output a greeting (a pre-recorded voice from families or friends). (iv) when the index finger swipes left or right, it goes back to the previous photo or forward to the next photo. (v) when the index finger clicks forward quickly in the air, recall will output a voice diary with the current photo (if the family member or friend records this voice diary while uploading this photo). (vi) recall will supervise the growth status of the plants, and remind the patients by outputting the pre-recorded family voice in case of no water or light. designs , , x for peer review of figure . the flow diagram of display. there are six movements in this interaction: (i.) when hands move close to recall within mm, the door opens and power turns on. (ii.) when hands move away from recall outside of mm, the door closes and power turns off (figure shows the display of interaction ii.). figure . interaction demonstration. (iii.) when the user waves their hand to recall, it will output a greeting (a pre-recorded voice from families or friends). (iv.) when the index finger swipes left or right, it goes back to the previous photo or forward to the next photo. (v.) when the index finger clicks forward quickly in the air, recall will output a voice diary with the current photo (if the family member or friend records this voice diary while uploading this photo). (vi.) recall will supervise the growth status of the plants, and remind the patients by outputting the pre-recorded family voice in case of no water or light. figure . interaction demonstration. designs , , of . hand gesture interaction method in this study, the leap motion device has been used for simulation experiments, and six simple interactive gestures have been defined. alzheimer’s disease is characterized by progressive memory loss, cognitive dysfunction, and personality changes [ ]. the decline of comprehension and memory means that it requires a more straightforward thing that allows them to understand and remember. therefore, it is necessary to make a more straightforward interaction based on ordinary interactive gestures, which is easy for alzheimer’s patients to understand and recognize. although there is no theory of touch screen gesture interaction design for alzheimer’s patients, it is considered that %– % of patients are over years old. they belong to the middle-aged and elderly groups. many current researchers have proposed the basic principles of touch-screen gesture interaction design for this user group. the website sap design guild proposed general guidelines for touch screen interface design [ ]: . high efficiency; . metaphorical; . certainty; . guiding; . testability. kevin arthur proposes a measure of the usability of touch-screen gestures [ ]: . easy to learn; . high efficiency; . satisfaction. for the middle-aged and elderly users, some researchers have proposed different design suggestions. stüβel proposed the importance of familiarity in touch screen design [ ]. miranda a. farage summarized characteristics of the elderly in terms of perception, motor function and cognition, and proposed guiding principles of product design for the elderly [ ]. in sum, in the touch screen gestures, the most important influencing factors are motor, function, touch, and cognition. this paper identifies the design points in table . table . key points of interactive action design. dimension pressure identify motor function reduce the difficulty of finger movement to avoid incoherent movements. the interval between operation design should not be too long. tactile sense enhance feedback stimulation and make clear distinctions. cognition use elder experience symbol, easy to learn, interactive consistent. gestures suitable for alzheimer’s patients should be based on single-finger and click-through modes. complex movements such as pushing multiple tasks on four fingers are not suitable for ad patients. the factors, such as the ease of learning and the high efficiency of the action, need to be paid more attention. accordingly, it is necessary to reduce the emphasis on the metaphorical and exciting aspects of the action. according to the particularity of alzheimer’s users, this study designed six kinds of actions and each action input has a corresponding different featured output. table shows define gestures based on pattern recognition and pressure identification. table . define gesture based on pattern recognition and pressure identify. gesture pattern recognition close to the hand shape is scaled up to x times/frame wave hand shape of hand rotates to the left and right of axis by a degree of β (specified numerical interval) and repeatedly rotates and resets x frames in succession away from shape of hand rotates to the left and right of axis by a degree of β (specified numerical interval) and repeatedly rotates and resets x frames in succession swipe left the displacement of the hand in continuous x frames is larger than the threshold y, and the displacement is positive swipe right the displacement of the hand in continuous x frames is greater than the threshold y, and the displacement is negative click shape of fingertip contact surface when clicking designs , , of the acquisition of dynamic gesture data is completed through leap motion. the recognition accuracy of gesture is analyzed, and the feasibility of gesture on the device is evaluated. figure shows display with gesture recognition via the leap motion visualizer. designs , , x for peer review of gesture pattern recognition close to the hand shape is scaled up to x times/frame wave hand shape of hand rotates to the left and right of axis by a degree of β (specified numerical interval) and repeatedly rotates and resets x frames in succession away from shape of hand rotates to the left and right of axis by a degree of β (specified numerical interval) and repeatedly rotates and resets x frames in succession swipe left the displacement of the hand in continuous x frames is larger than the threshold y, and the displacement is positive swipe right the displacement of the hand in continuous x frames is greater than the threshold y, and the displacement is negative click shape of fingertip contact surface when clicking a total of samples were collected, and samples were collected for each gesture. the recognition accuracy was divided by the number of correct recognition times to obtain table . the average recognition accuracy with the six hand gestures is . %. figure . display with gesture recognition via the leap motion visualizer (from left to right and top to bottom: close to, away from, wave hand, swipe left, swipe right, click). table . the posture classification and recognition accuracy of six gestures on leap motion. posture gesture average recognition accuracy % five fingers close to . wave hand . away from . - - single finger swipe left . swipe right . click . average . . conclusions and future work figure . display with gesture recognition via the leap motion visualizer (from left to right and top to bottom: close to, away from, wave hand, swipe left, swipe right, click). a total of samples were collected, and samples were collected for each gesture. the recognition accuracy was divided by the number of correct recognition times to obtain table . the average recognition accuracy with the six hand gestures is . %. table . the posture classification and recognition accuracy of six gestures on leap motion. posture gesture average recognition accuracy % five fingers close to . wave hand . away from . - - single finger swipe left . swipe right . click . average . . conclusions and future work this paper proposes recall, which is a touch interaction product to assist cognitive rehabilitation training for patients with ad. it integrates the functions of cultivating plants and assisting cognitive rehabilitation, mimics children’s faces, and stimulates patients’ memories, especially the memory of family members. compared with previous products for ad patients, this paper focus on the psychological and cognitive rehabilitation of users, rather than the physical level. in this paper, the concept of touch interaction system for ad patients is proposed, a prototype is made, and a set of simplified human–computer interaction gestures is proposed. however, there are shortcomings in the system. due to the ever-changing human gestures, accurate recognition cannot be achieved simply by relying on arduino, sensors, and leap motion. in the future, it is essential to build a user ’s big data gesture library and calculate the data through a machine learning algorithm in order to make human–computer interaction more accurate and intelligent. designs , , of author contributions: conceptualization, t.l. and j.c.; methodology, t.l. and j.c.; software, t.l.; validation, j.c.; formal analysis, t.l.; investigation, t.l.; resources, t.l. and j.c.; data curation, t.l.; writing—original draft preparation, t.l.; writing—review and editing, t.l.; visualization, t.l.; supervision, j.c.; project administration, j.c. all authors have read and agreed to the published version of the manuscript. funding: this research received no external funding. conflicts of interest: the authors declare no conflict of interest. references . world alzheimer report : attitudes to dementia; alzheimer’s disease international: london, uk, ; pp. – . . jiang, d.; xia, y. analysis of the status of non-pharmacological treatment of alzheimer’s disease. med. soc. , , – . 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[crossref] . xia, z.; lei, q.; yang, y.; zhang, h.; he, y.; wang, w.; huang, m. e vision-based hand gesture recognition for human-robot collaboration: a survey. in proceedings of the th international conference on control, automation and robotics (iccar), beijing, china, – april ; pp. – . . aklyne, p.; divya, u. comparative analysis of the software techniques available for protecting alzheimer patient. in proceedings of the th international conference—cloud system and big data engineering, noida, india, – january ; pp. – . . ana, b.; renato, o.; filipe, s.; artur, c.; cândido, d. environment-aware system for alzheimer’s patients. in proceedings of the th international conference on wireless mobile communication and healthcare— transforming healthcare through innovations in mobile and wireless technologies (mobihealth), athens, greece, – november ; pp. – . . jasvinder, s.; ashish, r. algorithmic music generation for the stimulation of musical memory in alzheimer ’s. in proceedings of the th international conference on computing communication and automation (iccca), greater noida, india, – december ; pp. – . . hoang, t.n.; foloppe, d.a.; richard, p. tangible virtual kitchen for the rehabilitation of alzheimer’s patients. in proceedings of the ieee symposium on d user interfaces ( dui), arles, france, – march ; pp. – . . carolina, g.v.; esther, m.m.; miguel angel, v.d.; ana, g.o. distributed system for cognitive stimulation over interactive tv. ieee trans. inf. technol. biomed. . 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(experimental) sap design version . . available online: https://rauterberg.employee.id.tue.nl/lecturenotes/da /touchscreendesignguidelines. pdf (accessed on december ). . kevin, w.a.; nada, m.; paul, a. evaluating touch gestures for scrolling on notebook computers. in proceedings of the extended abstracts on human factors in computing systems (chi ea ’ ), new york, ny, usa, – april ; pp. – . . christian, s. familiarity as a factor in designing finger gestures for elderly users. in proceedings of the th international conference on human-computer interaction with mobile devices and services (mobilehci ’ ), bonn, germany, – september . acm - - - - . . farage, m.a.; miller, k.w.; ajayi, f.; hutchins, d. design principles to accommodate older adults. glob. j. health sci. , , – . [crossref] [pubmed] © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . /j.yxysh. . . http://dx.doi.org/ . /nrneurol. . http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /j.issn. - . . . http://dx.doi.org/ . /titb. . http://dx.doi.org/ . /nitcwm. https://rauterberg.employee.id.tue.nl/lecturenotes/da /touchscreendesignguidelines.pdf https://rauterberg.employee.id.tue.nl/lecturenotes/da /touchscreendesignguidelines.pdf http://dx.doi.org/ . /gjhs.v n p http://www.ncbi.nlm.nih.gov/pubmed/ http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	related work 	concept and inspiration 	expert interview 	users segmentation 	interaction 	hand gesture interaction method 	conclusions and future work 	references pet imaging for initial staging and therapy assessment in multiple myeloma patients hal id: inserm- https://www.hal.inserm.fr/inserm- submitted on apr hal is a multi-disciplinary open access archive for the deposit and dissemination of sci- entific research documents, whether they are pub- lished or not. the documents may come from teaching and research institutions in france or abroad, or from public or private research centers. l’archive ouverte pluridisciplinaire hal, est destinée au dépôt et à la diffusion de documents scientifiques de niveau recherche, publiés ou non, émanant des établissements d’enseignement et de recherche français ou étrangers, des laboratoires publics ou privés. pet imaging for initial staging and therapy assessment in multiple myeloma patients clément bailly, rodolphe leforestier, bastien jamet, thomas carlier, mickael bourgeois, françois guérard, cyrille touzeau, philippe moreau, michel chérel, françoise kraeber-bodéré, et al. to cite this version: clément bailly, rodolphe leforestier, bastien jamet, thomas carlier, mickael bourgeois, et al.. pet imaging for initial staging and therapy assessment in multiple myeloma patients. international journal of molecular sciences, mdpi, , ( ), pii: e . � . /ijms �. �inserm- � https://www.hal.inserm.fr/inserm- https://hal.archives-ouvertes.fr international journal of molecular sciences review pet imaging for initial staging and therapy assessment in multiple myeloma patients clément bailly , , rodolphe leforestier , bastien jamet , thomas carlier , , mickael bourgeois , , françois guérard , cyrille touzeau , philippe moreau , michel chérel , , françoise kraeber-bodéré , , and caroline bodet-milin , ,* nantes-angers cancer research center (crcna), university of nantes, inserm umr , quai moncousu, nantes, france; clement.bailly@chu-nantes.fr (c.b.); thomas.carlier@chu-nantes.fr (t.c.); mickael.bourgeois@nantes.inserm.fr (m.b.); francois.guerard@univ-nantes.fr (f.g.); michel.cherel@univ-nantes.fr (m.c.); francoise.bodere@chu-nantes.fr (f.k.-b.) department of nuclear medicine, chu de nantes, place alexis ricordeau, nantes, france; rodolpheleforestier@hotmail.fr (r.l.); bastien.jamet@chu-nantes.fr (b.j.); cyrille.touzeau@chu-nantes.fr (c.t.); philippe.moreau@chu-nantes.fr (p.m.) department of nuclear medicine, ico-rené gauducheau, boulevard jacques monod, saint-herblain, france * correspondence: caroline.milin@chu-nantes.fr; tel.: + - - - ; fax: + - - - academic editor: william chi-shing cho received: january ; accepted: february ; published: february abstract: multiple myeloma (mm) is a hematological neoplasm characterized by the clonal proliferation of malignant plasma cells in the bone marrow. mm results in diffuse or focal bone infiltration and extramedullary lesions. over the past two decades, advances have been made with regard to the diagnosis, staging, treatment, and imaging of mm. computed tomography (ct) and magnetic resonance imaging (mri) are currently recommended as the most effective imaging modalities at diagnostic. yet, recent data from the literature suggest that positron emission tomography combined with computed tomography (pet/ct) using f-deoxyglucose (fdg) is a promising technique for initial staging and therapeutic monitoring in this pathology. this paper reviews the recent advances as well as the potential place of a more specific radiopharmaceutical in mm. keywords: multiple myeloma; solitary plasmacytoma; pet/ct; therapeutic evaluation . introduction multiple myeloma (mm) is a malignancy characterized by the clonal proliferation of plasma cells. it is marked by heterogeneous phenotypic, genetic and clinical presentation and it is almost always preceded by monoclonal gammopathy of undetermined significance (mgus) [ ]. smoldering multiple myeloma (smm) represents a mid-clinical stage between mgus and mm. this latter constitutes a heterogeneous entity including patients displaying a very slow progression towards an identified mm within several years and patients progressing rapidly towards symptomatic myeloma (high-risk smm). the definition of symptomatic mm, a clinical staging requiring treatment, was traditionally based on the presence of organ damage related to plasma cell growth as defined by crab criteria (hypercalcemia, renal insufficiency, anemia and the presence of bone lesions). this definition was revised in by the international myeloma working group (imwg), integrating new prognostic biomarkers, with the aim of not delaying the initiation of treatment of high-risk smm-classified patients and to avoid the establishment of harmful bone lesions or renal impairment [ ]. new biomarkers have therefore been defined as associated with an % probability of progression towards positive mm int. j. mol. sci. , , ; doi: . /ijms www.mdpi.com/journal/ijms http://www.mdpi.com/journal/ijms http://www.mdpi.com http://www.mdpi.com/journal/ijms int. j. mol. sci. , , of crab criteria within two years, making it possible to identify patients requiring therapy: clonal bone marrow plasma cell percentage ≥ %, involved/uninvolved serum free light chain ratio ≥ , and more than focal bone lesion (fl) (≥ mm in size) on magnetic resonance imaging (mri) studies. given that the presence of even an asymptomatic bone disease must be considered as a treatment criterion, imaging plays a significant role in the management of mm [ ]. although a standard skeletal survey was traditionally considered as the reference technique, studies carried out over the last years have established the superior performances of low-dose whole-body computed tomography (ct-wb) and mri. positron emission tomography (pet) using f-deoxyglucose (fdg-pet), a marker of glucose metabolism, produces performances similar to that of morphological imaging techniques in bone lesions’ detection. mri detects bone abnormalities in more than % of patients presenting with symptomatic mm and appears as the best procedure for evaluating painful lesions and detecting medullary compression [ ]. on the other hand, in the therapeutic follow-up, the mri performances are less satisfactory due to a high frequency of false-positive images, while fdg-pet appears to be more effective [ , ]. in addition, mri is recommended in smm patients: patients presenting more than non-equivocal fl (diameter > mm) must be considered as suffering from symptomatic mm and requiring treatment [ , ]. in patients presenting equivocal anomalies in mri, staging can be completed by a ct-wb or a fdg-pet to confirm asymptomatic bone impairment [ ]. by detecting tumor cells or a tumor environment with high glucose consumption, fdg-pet provides additional information to that provided by mri or ct [ ]. in criteria revised in , the detection of one or more osteolytic lesions in fdg-pet defines mm bone disease recognized by the crab criteria. fdg-pet can also be proposed to patients with smm if mri is inaccessible or non-conclusive [ ]. in addition, fdg-pet allows for the detection of extra-medullary disease (emd) and provides prognostic information for symptomatic mm at baseline and therapeutic follow-up [ – ]. fdg-pet is of equal interest for patients with solitary plasmacytoma (sp) to detect emd [ , ] and has a prognostic value in patients with smm [ , ]. other radiopharmaceuticals targeting alternative mm biomarkers have also shown promising results, such as radio-labeled choline, ga-pentixafor targeting c–x–c chemokine receptor type (cxcr ), and immuno-pet using radiolabeled monoclonal antibodies (mabs) as a companion of antibody-based therapies [ – ]. . fdg-pet for bone disease detection despite some variations from one study to another, fdg-pet permits a whole-body investigation with an overall sensitivity of % and specificity of % for the detection of myeloma lesions [ – ]. it has the ability to show diffuse involvement, fls, or mixed bone diseases with variable glucose uptake, resulting in heterogeneous maximum standardized uptake values (suvmax). pet-fdg enables the detection of emd, which occurs in less than % of patients at diagnosis. fdg-pet is also useful for evaluating patients with non- or slightly secreting forms of myeloma, which cannot be evaluated by biological methods. fdg-pet sensitivity is better than a whole-body skeletal survey, showing additional lesions in half of the studied patients yet with reported false negative scans for small size lesions of the skull [ ]. the french imagerie jeune myélome (imajem) study has compared fdg-pet and mri performed at baseline in patients with symptomatic mm, showing comparable results with both techniques, detecting abnormalities in more than % of the patients [ ]. fdg-pet also allows for the detection of additional medullary lesions or emd in regions unexplored by mri. in patients with sp, fdg-pet detects additional lesions with a greater sensitivity and specificity than mri [ ]. in addition, it has been demonstrated that the presence of at least two hypermetabolic lesions predict a rapid progression towards mm [ ]. int. j. mol. sci. , , of . prognostic value of fdg-pet in baseline evaluation of symptomatic mm and smm the prognostic value of fdg-pet and mri were firstly compared in a large prospective series of patients who underwent homogeneous first line treatment in a double autograft program [ ]. in multivariate analysis, the only diagnostic imaging modality significantly associated with an unfavorable prognostic value, both for overall survival (os) and event-free survival (efs), was fdg-pet when the number of fls was greater than three at diagnosis. the number of fls on the baseline mri ( and more) affected efs, but not os. the prognostic value of the number of fls on fdg-pet at baseline was then confirmed in a large series of patients with mm treated with thalidomide-dexamethasone induction therapy and double autologous stem cell transplantation (asct) [ ]. in this study, at least fls ( % of cases), a suvmax > . ( % of cases) and the presence of emd ( %) negatively affected four-year progression-free survival (pfs). the suvmax > . and the presence of emd were also associated with shorter os. the prognostic value of fdg-pet at diagnosis has also been studied in a smaller series of patients including mm ( patients) or sp ( patients) [ ]. a correlation has been found between the most intense emd fdg-uptake and both osteo-medullary fixation (p = . ) and the international staging system (iss) score (p = . ). the bone marrow suvmax was correlated with the iss score (p = . ). the patients with positive fdg-pet had a shorter five-year survival ( %) than the patients with negative fdg-pet patients, all of whom were alive after five years (p = . ). in multivariate analysis, only the emd with the highest suvmax had a prognostic value on os (p = . ). another study comparing fdg-pet and mri in a small series of patients with mm at diagnosis concluded that fdg-pet had a prognostic value above mri [ ]. the univariate and multivariate analyses showed that fls and diffuse bone marrow impairments on fdg-pet affected patients’ pfs (p < . ), whereas os was only affected by fls (p = . ). the mri data were not predictive in multivariate analysis. several studies also evaluated the prognostic value of baseline volume-based fdg-pet parameters. these metrics such as metabolic tumor volume (mtv) and total lesion glycolysis (tlg) appear as promising tools by quantifying functional disease burden in mm [ , ]. in a recent study performed with mm patients, baseline tlg higher than g and mtv higher than cm were associated with poor pfs and os after adjusting for baseline myeloma variables. combined with the -gene expression profiling (gep ) risk score, tlg higher than g identified a high-risk subgroup, and divided iss stage ii patients into two subgroups with similar outcomes to iss stage i and iss stage iii. however, because of heterogeneous data, further prospective clinical studies are mandatory to confirm the validity of these results. in smm, fdg-pet also showed a prognostic value. in a series of patients with smm, siontis et al. [ ] demonstrated that the probability of progression within two years of patients with positive fdg-pet (hyper fixation with or without lytic lesion described on ct) was % vs. % in patients with negative fdg-pet, without therapy (median progression: months vs. months; p < . ). among patients with positive fdg-pet, the probability of progression was % at two years when high uptake foci were accompanied by osteolytic lesion (n = ) vs. % in the cases without ct lesion (n = ). in a prospective study of patients, zamagni et al. [ ] demonstrated a rate of progression towards mm at two years for patients with positive fdg-pet (fls without osteolytic involvement in relation to ct) of % vs. % for patients with negative fdg-pet. . therapy assessment in symptomatic mm obtaining complete metabolic remission (cmr) on fdg-pet exam in an intermediate evaluation before or after asct is associated with better survival rates. bartel et al. [ ] showed that the normalization of fdg fixation in fls after initial chemotherapy courses and prior to asct was associated with improved efs and os. confronted with genetic profiles, pre-asct cmr bestowed better os in low risk patients and better efs in high-risk patients. in , the same team reported the prognostic value of early fdg-pet performed on day of induction therapy, in a series of patients int. j. mol. sci. , , of treated according to the same intensive protocol, of whom also had gene expression profiling [ ]. the multivariate analysis concluded that more than fls on fdg-pet on day was associated with lower pfs and os even in the subgroup of high-risk patients according to genetic profiles. this underlies the value of fdg-pet as a future tool for early corrective therapeutic measures. in the italian series of patients, the persistence of a suvmax > . after induction therapy was associated with a reduced pfs [ ]. three months after asct, cmr was obtained in % of the patients, with better four-year pfs and os than those of fdg-pet positive patients. interestingly, % of the patients obtaining complete remission according to conventional criteria were considered as fdg-pet positive. multivariate analysis showed that post-asct fdg-pet status was an independent prognostic factor of pfs. the same team confirmed these findings in , in a series of patients with symptomatic mm undergoing first-line treatment between and [ ]. median follow-up was months. after treatment, cmr was obtained in % of patients, whereas conventionally defined complete response was observed in % of cases. fdg-pet negativization favorably affected pfs and os. in % of patients experiencing relapse, skeletal progression was only detected by systematic fdg-pet during follow-up. multivariate analysis showed that a suvmax > . on metabolic imaging after first-line treatment was an independent predictive factor of progression. the interest of post-asct fdg-pet has also been reported in a prospective series of patients evaluated by fdg-pet three months after transplant and every – months during follow-up [ ]. the patients were classified into group (relapse) and group (no relapse). in group , the time to relapse was longer when fdg-pet was negative ( . months) than when it was positive ( months) (p = . ) with a suvmax inversely correlated with the time to relapse (p < . ) in pet positive patients. in group , patients had a negative fdg-pet and positive but with suvmax remaining stable in the follow-up. finally, the french imajem [ ] study confirmed the superiority of fdg-pet as opposed to mri in the therapeutic evaluation of patients with mm in front-line therapy. this work prospectively compared the value of mri and fdg-pet realized at diagnosis, after three cycles of induction chemotherapy and before maintenance therapy, in a series of patients treated in the intergroupe francophone du myelome/dana–farber cancer institute (ifm/dfci) clinical trial. fdg-pet normalization after three cycles of induction chemotherapy was associated with a better pfs (p = . ), as opposed to mri. pre-maintenance therapy fdg-pet normalization was equally correlated with improved pfs (p < . ) and os (p = . ), unlike mri. similarly to the evaluation of lymphomas [ ], concerted efforts have been made to standardize response assessment for fdg-pet imaging in mm. as described in this review, different groups have reported promising and concordant results. yet the lack of standard interpretation criteria makes it difficult to draw general guidelines. several studies mainly relied on semi-quantitative analysis such as suvmax, while others based their image interpretation on a visual assessment or on both methods. in this context, new interpretation criteria (italian myeloma criteria for petuse; impetus) were drafted by a group of italian nuclear medicine experts as a framework that may be useful for harmonizing clinical trials results [ ]. moreover, considering the additive value of imaging-based assessment of minimal residual disease (mrd), the imwg has recently defined new response categories of mrd negativity [ ]. these combine the absence of clonal plasma cells detectable by flow-cytometry or molecular techniques, negative fdg-pet imaging, and a normal heavy/light chain ratio, and probably better represents complete response, to available levels of detection, of malignant cells from all compartments. further prospective studies are warranted to confirm the validity of these parameters. . fdg-pet to detect relapse the interest of fdg-pet has also been evaluated in patients with mm suspected of relapse after asct [ ]. it has been shown in a small series of patients that the absence of fdg avid foci was a prognostic factor associated with better time to relapse and os (p < . ). the presence of more than fls was correlated with lower time to relapse (p < . ) and os (p < . ). the intensity of fdg int. j. mol. sci. , , of uptake and the presence of emd were also correlated with a shorter time to relapse (p = . and p = . , respectively). moreover, the fdg-pet findings led to a change in patients’ management in % of cases. . pet using other radiopharmaceuticals certain studies have emphasized the diagnostic interest of new radiotracers in mm. in a pilot study, cassou-mounat et al. [ ] compared f-fluorocholine (fch), a metabolite incorporated into various phospholipids essential in the formation of cell membranes, and fdg for the detection of mm lesions in patients at time of disease relapse or progression. in the patients with countable bone foci, the on-site reader detected fdg foci vs. fch foci (+ %), and the masked reader fdg foci vs. fch foci (+ %), both differences being significant. these data suggested that pet performed for suspected relapsing or progressive mm would reveal more lesions when using fch rather than fdg. similarly, lapa et al. [ ] prospectively compared the myeloma lesions’ detection sensitivity of fdg and c-methionine (met), an amino acid required for protein synthesis, in mm patients for staging or re-staging. met-pet detected fl in patients (detection rate: . %), whereas patients were missed on fdg-pet (detection rate: . %, p < . ). met depicted more fls in patients (p < . ). both fdg and met uptake correlated significantly with biopsy-proven bone marrow involvement (p < . ), with met demonstrating a stronger correlation (suvmean, r = . vs. r = . ; suvmax, r = . vs. r = . ). abnormal β- -microglobulin and free light chain levels correlated with the presence of focal intramedullary lesions detected in met- or fdg-pet (met, p = . and p = . , respectively; fdg, p = . and p = . ). on the other hand, despite a potential theoretical value, discouraging results have been observed regarding the performance of f-naf in the assessment of mm. this radiotracer reflects bone remodeling and appears as an interesting imaging method for malignant bone diseases. yet, as reported in both diagnostic and treatment evaluation [ , ], f-naf does not seem to add significant information to fdg-pet in mm patients. theranostic radiopharmaceuticals could also be of interest in mm. cxcr is often expressed in high concentration by the monoclonal plasma cells, and a recent study performed in relapsing mm suggested potential of ga-pentixafor, a specific ligand showing a high affinity for cxcr , offering an excellent contrast in cxcr -positive patients [ ]. cxcr can also be targeted by the β-particle-emitters lu- or y-pentixather for therapeutic purposes, ga-pentixafor allowing for a selection of patients to these therapies in a theranostic approach [ ]. radiolabeled mabs with radionuclides such as cu or zr are also considered to select patients before antibody-based therapies [ ], and preclinical studies reported feasibility of immuno-pet with cu in mm mice models [ ]. . conclusions fdg-pet constitutes a high performance imaging in symptomatic mm patients to detect medullary and extra-medullary disease at baseline, to assess therapy with prognostic value and to detect relapse after treatment. yet, fdg-pet interpretation criteria and methods should be standardized for extensive use in clinical practice for symptomatic mm patient management [ ]. in smm, fdg-pet allows for the detection of patients with a high risk of progression towards mm. pilot studies also reported the interest of innovative radiopharmaceuticals targeting other biomarkers in mm, with potential interest in theranostic approaches. acknowledgments: this work has been supported in part by grants from the french national agency for research, called “investissements d’avenir” iron labex no. anr- -labx- - . author contributions: all authors have directly participated in the review process or in the writing of this paper, and have read and approved the final version submitted. conflicts of interest: the authors declare no conflict of interest. int. j. mol. sci. , , of references . röllig, c.; knop, s.; bornhäuser, m. multiple myeloma. lancet , , – . 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[crossref] [pubmed] © by the authors; licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . /s - - -y http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /s - - - http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /jnumed. . http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /s - - - http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /c ob e http://www.ncbi.nlm.nih.gov/pubmed/ http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	fdg-pet for bone disease detection 	prognostic value of fdg-pet in baseline evaluation of symptomatic mm and smm 	therapy assessment in symptomatic mm 	fdg-pet to detect relapse 	pet using other radiopharmaceuticals 	conclusions letter to the editor alternative measures to chronic pain management abdul k mohiuddin keywords: alternative pain management, cancer pain, management, non-drug pain, opioid overdose, pain. journal of health sciences & research ( ): . /jp-journals- - “no pain no gain” still is one of the most widely used inspiring quotes. with that spirit, chronic pain suf ferers should f ind heaven on earth at some point of life. however, chronic pain is a widespread and complex set of conditions that are often difficult and expensive to treat. the institute of medicine (us) estimated that chronic pain affects over million americans and is associated with $ billion in healthcare costs annually. of this, close to % is associated with the economic burden of prescription of opioid overdose, abuse, and dependency. pain increases depression three- to fivefold, and – % of chronic pain patients report insomnia that warrants clinical attention. conventional pain killers are usually associated with a variety of adverse side effects, such as constipation, urinary retention, nausea, sedation, respiratory depression, low platelet count, sexual dysfunction, and hyperalgesia. pain affects more than % of cancer patients, distressing or intolerable in more than one-third of patients. although the who described opioids as essential medicines for pain control but distribution shows substantial inequity—a less than % of the world’s population consuming more than % of the world’s supply. famous celebrities like bruce lee, chris penn, elvis presley, heath ledger, and anna nicole smith died from opioid overdose. also, some % of primary care physicians perceived their training in pain management to be inadequate in a pan-european survey. along with these, fear of dependence, prescription diversion, regulatory scrutiny, withdrawal symptoms, opioid-related adverse events, and deaths limit its use. although abuse and availability of medical cannabis are big issues, several studies support use of cannabis/marijuana in cancer pain management. its social acceptability is gradually increasing around the world, but many studies oppose its use or at least demand further investigation of the benefit: risk ratio. long-term use of nonsteroidal anti- inflammatory drugs (nsaids, like ibuprofen, naproxen) is often associated with many serious cardiovascular, gastrointestinal, renal, and other side effects. mild-to-moderate pain may be relieved by nondrug techniques alone. moderate-to-severe pain may require medication in addition to nondrug techniques. neuropathic pain estimates of % among those with chronic pain. non-drug techniques can decrease pain intensity and awareness of pain. physical activity is the most basic, simple, and well-known preventive and therapeutic measure for low back pain, particularly when the problem is caused by sedentary behavior. a study on arthritic patients revealed that walking , or more steps/day was associated with – % less risk of developing functional limitation years later. regular exercise can reduce physical impairments and improve participation in social, domestic, occupational, and recreational activities. additional benefits of exercise include improvements in mobility, risk of falls, body weight, mental health, and metabolic abnormalities among arthritis patients. approximately, – % of the western population will develop low back pain at least once during their lifetime. an -week moderate-intensity aerobic exercise at – % of heart rate reserve combined with conventional physiotherapy significantly reduced nearly % nonspecific chronic low back pain (nsclbp). pain causes stress, and stress affects pain control chemicals in the brain, such as norepinephrine and serotonin. behavioral approaches/relaxation training can help reduce muscle tension and stress, lower blood pressure, and control pain. physical therapy should strongly be considered for the management of chronic pain to gradually increase flexibility and strength. adding the cognitive behavioral treatment (cbt) component to routine physical therapy reduces nsclbp, disability and depression, and fear of movement with enhanced self-efficacy, enhancing functional capacity and qol. companion of choice at birth increases the likelihood of vaginal births, reduces the need for cesarean sections, the use of forceps or vacuum during vaginal births, need to use pain medications during labor, shortens the duration of labor, improves women’s satisfaction with care, and improves apgar scores. music therapy, in general, was effective in reducing pain intensity, fatigue, anxiety, and analgesic consumption in gynecological patients during the postoperative period. postoperative pain is not adequately managed in greater than % of patients in the united states. cryotherapy should be widely used in the same because it is a noninvasive, very cost-effective, devoid of complication, and a very favorable patient report. about % of patients with low back pain are treated with heating therapy and % with cooling therapy. cooling therapy decreases tissue blood flow due to vasoconstriction, and it also reduces tissue metabolism, oxygen utilization, and inflammation. transcutaneous electrical nerve stimulation (tens) as an adjunct is effective in reducing lower limb spasticity when applied for more than minutes over nerve or muscle belly in chronic stroke survivors. in france, work productivity loss contributed almost % of the total costs incurred by patients with fibromyalgia, with an economic cost of , million euros annually, which is around $ billion in the united states. low fermentable oligo-, di-, monosaccharides, and polyols (fodmap) and neurofeedback reduce pain intensity dr. m. nasirullah memorial trust, tejgaon, dhaka, bangladesh corresponding author: abdul k mohiuddin, dr. m. nasirullah memorial trust, tejgaon, dhaka, bangladesh, phone: + - , e-mail: trymohi@gmail.com how to cite this article: mohiuddin ak. alternative measures to chronic pain management. j health sci res ; ( ): – . source of support: nil conflict of interest: none © the author(s). open access this article is distributed under the terms of the creative commons attribution . international license (https://creativecommons. org/licenses/by-nc/ . /), which permits unrestricted use, distribution, and non-commercial reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated. chronic pain management journal of health sciences & research, volume issue (july–december ) and improve attention and qol more successfully than other psychological or multicomponent programs. meditation-based interventions improve pain symptomology across a wide spectrum of pain-related disorders, including fibromyalgia, migraine, and chronic pelvic pain. aromatherapy with orange oil can relieve pain in patients with fractured limbs. a study has shown that edible oil of orange can reduce breast pain caused by premenstrual syndrome. pets provide companionship, unconditional love, and joy. an average minutes of exposure to a therapy dog reduces anxiety in % of fibromyalgia patients, together with reductions in pain and improvements in mood. pet therapy significantly increases patients’ overall feeling of well-being and reduces anxiet y about future uncertainty. there are three elements in hypnosis: absorption, dissociation, and suggestibility. alleviation of pain with hypnosis, especially for patients who experienced obvious pain during the first eye surgery, is also reported. a hypnosis session during subcutaneous venous port implantation under local anesthesia in cancer patients significantly improved patient satisfaction. acupuncture and yoga are found to be effective in reducing lymphedema and pain in patients after breast cancer treatment. , r e f e r e n c e s . wong rsy. role of nonsteroidal anti-inflammatory drugs (nsaids) in cancer prevention and cancer promotion. adv pharmacol sci ; : . doi: . / / . . varma vr, chuang yf, harris gc, et al. low-intensity daily walking activity is associated with hippocampal volume in older adults. hippocampus ; ( ): – . doi: . /hipo. . . gatchel rj, low back pain: recent advances and perspectives. mdpi (healthcare), , page . isbn - - - - (pbk), - - - - (pdf). . hajihasani a, rouhani m, salavati m, et al. the influence of cognitive behavioral therapy on pain, quality of life, and depression in patients receiving physical therapy for chronic low back pain: a systematic review. pm r ; ( ): – . doi: . /j.pmrj. . . . . kabakian-khasholian t, portela a. companion of choice at birth: fac tors af fec ting implementation. bmc pregnanc y childbir th ; ( ): . doi: . /s - - - . . mahmood a, veluswamy sk, hombali a, et al. effect of transcutaneous electrical nerve stimulation on spasticity in adults with stroke: a systematic review and meta-analysis. arch phys med rehabil ; ( ): – . doi: . /j.apmr. . . . . mohiuddin ak . non-drug pain management: opportunities to explore. biomedgrid llc, usa . isbn: - - - - . . kline ja, fisher ma, pettit kl, et al. controlled clinical trial of canine therapy versus usual care to reduce patient anxiety in the emergency department. plos one ; ( ):e . doi: . /journal. pone. . . chien tj, liu cy, fang cj. the effect of acupuncture in breast cancer- related lymphoedema (bcrl): a systematic review and meta-analysis. integr cancer ther ; . / erratum in: integr cancer ther ; . . panchik d, masco s, zinnikas p, et al. effect of exercise on breast cancer-related lymphedema: what the lymphatic surgeon needs to know. j reconstr microsurg ; ( ): – . doi: . /s- - . page - © mat journals . all rights reserved journal of neurological, psychiatric and mental health nursing volume issue knowledge regarding pet therapy for reducing selected psychological problems among geriatric clients dayananda bittenahalli omkarappa associate professor, hod, department of psychiatric nursing, kempegowda college of nursing, bangalore, india e-mail: bodayananda@gmail.com abstract background and objectives: the older age group will be greater risk for depression, anxiety disorders and substance abuse etc... health professionals will be challenged to design strategies that address the higher prevalence of psychological problems with in this aging population. pet therapy is becoming popular for treating psychological problems. older people are more likely to maintain good mental health, if appropriate health education services are provided. therefore the investigator planned to conduct the study to assess the knowledge regarding pet therapy for reducing selected psychological problems among geriatric clients with a view to develop an information guide sheet. methods: a descriptive survey design with purposive sampling was used to collect the data from geriatric clients who are residing at bangalore. data was collected using a structured interview schedule. statistical analysis used: data were analyzed using statistical package for the social sciences software package (version ). results: the overall mean knowledge score regarding pet therapy was . % with the sd . and % of respondents had adequate knowledge, % had moderate knowledge and % had inadequate knowledge regarding pet therapy. conclusion: the overall finding showed that the geriatric clients in general do not possess adequate knowledge regarding pet therapy for reducing psychological problems. keywords: anxiety, depression, pet therapy and old age introduction old may be gold, but going by the condition of the elderly in our country, it is hard to say that old age is golden age. in india the elderly with . per cent of total population face a number of psychological problems such as depression, dementia, delirium, sleep disorders, anxiety disorders, alcohol abuse and suicide[ ]. several psychosocial predisposing factors affects the older people to develop mental disorders. some of the risk factors such as loss of social roles, loss of autonomy, the deaths of friends & relatives, declining health, increased isolation, financial constraints, decreased cognitive functioning and confinement to bed because of physical illness can affect the elders physical and mental health[ ]. successful psychological aging is reflected in the older person’s ability to adapt to physical, social and emotional losses and to achieve contentment, serenity, and life satisfactions [ ]. health education services are integral aspects to helping older adults to lead high quality lives throughout their expanded life span [ ]. the man animal bond has existed since time immemorial and has always been a beautiful one. modern human would be genetically predisposed to keep and derive comfort from animals. very large populations of them have the habit to keep one or more companion animals. the lonely isolated older person gains a great page - © mat journals . all rights reserved journal of neurological, psychiatric and mental health nursing volume issue deal from having a living, moving animal on the lap, or sliding over his feet; petting the soft fur of a puppy; hugging and kissing a cute, loveable pet [ ]. several studies reported that pets can aid relaxation, lowers ones blood pressure, promote healing and prolong life. pets can help a person to cope with stressful events, prevent loneliness, decrease depression, improve activities of daily living and increase social interaction [ ]. the studies have shown that people with pets have fewer minor health problems, require fewer visits to the doctor and less medication and have fewer risk factors for heart disease, such as high blood pressure or cholesterol level [ ]. psychological problem accounts for major chronic problem among geriatric people. depression is particularly prevalent ranging from - % of cases, anxiety disorder accounts for - % cases, alcohol abuse % to % cases, and suicide to % cases and others [ ]. a study was conducted on knowledge and subjective experience regarding psychological problems among geriatric client shows that more than half ( . %) agreed that they felt more stressed due to ageing and . % felt that ageing has had a negative effect on their emotional state [ ]. stasi mf et.al., ( ) conducted a study to evaluate the effect of pet therapy on institutionalized elderly patients in long term care shows that, patients with animal interaction had reduced depressive symptoms and a significant decrease in blood pressure values[ ]. pets provide unconditional non-judgmental love and affection, which can be the perfect antidote for a depressed mood or a stressful situation. the role of animals in human healing process still requires more research [ ] hence the investigator felt that there is a need to assess the knowledge regarding pet therapy and planned to provide information guide sheet regarding pet therapy to reduce psychological problems among geriatric clients. the objectives of the study . to assess the knowledge regarding pet therapy for reducing selected psychological problems among geriatric clients. . to find out the association between levels of knowledge regarding pet therapy for reducing selected psychological problems with selected demographic variables. materials and methods a cross sectional descriptive survey research design was adopted for the present study. the purposive sampling technique was used to collect the data from geriatric clients who are residing at bangalore urban from january to april . data was collected using a structured interview schedule. structured interview schedule consists of questions related to knowledge on pet therapy for reducing selected psychological problems. the items included on psychological problems of old age, history and meaning of pet therapy, types of pets involved in pet therapy, beneficiaries of pet therapy, benefits and disadvantages of pet therapy and boon for elderly. each question in the structured interview schedule had four options, one being the right answer and carried one mark. the total score allotted for questions was . a total score of & above are classified as adequate knowledge, score of to are classified as moderate knowledge and below are classified as inadequate knowledge. statistical analysis data were analyzed using statistical package for the social sciences software package (version ), and results were presented in table form. http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=search&term=% stasi% mf% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract page - © mat journals . all rights reserved journal of neurological, psychiatric and mental health nursing volume issue results in the present study, % of respondents were in the age group of - years, % were in the age group of - years, % were male and % were female. among the study participants % were hindus, % were muslims, out of geriatrics % were married, and % were widow/er. % are retired, % are house wife, with regard to income status % had nil income and % of them had income less than rs per month. regarding family status % were belongs to joint families, and % of them belong to nuclear family. related to educational status % had no formal education, and % of them had high school. with regard to source of information % were got the information through news paper and % of them are not having pets at home. the highest mean knowledge of respondents found in the aspect of types of pets involved in pet therapy ( %) followed by psychological problems of old age ( . %), history and meaning of pet therapy ( . %), boon for elderly ( . %), benefits and disadvantages of pet therapy ( . %) and the least mean knowledge score ( . %) found in the aspect of beneficiaries of pet therapy. the overall mean knowledge score of respondents were found to be . % with the sd . (table ). further the results revealed that only % of respondents had adequate knowledge, % had moderate knowledge and % had inadequate knowledge (figure ). there was a significant association exists between age, education status and availability of pets with knowledge of respondents at the level p< . . the other demographic variables such as gender, religion, marital status, occupation, income and type of family with knowledge level of respondents had no significant association between (p> . ). table: . overall mean knowledge of respondents regarding pet therapy for reducing psychological problems n= no. knowledge aspects state- ments max. score range score knowledge score mean mean (%) sd i psychological problems of old age - . . . ii history and meaning of pet therapy - . . . iii types of pets involved in pet therapy - . . . iv beneficiaries of pet therapy - . . . v benefits and disadvantages of pet therapy - . . . vi boon for elderly - . . . combined - . . . page - © mat journals . all rights reserved journal of neurological, psychiatric and mental health nursing volume issue fig: . classification of respondents by level of knowledge regarding pet therapy for reducing psychological problems discussion the present study shows that most of geriatric clients had inadequate knowledge regarding pet therapy for reducing selected psychological problems. the study is supported by knight s, edwards v ( ) who conducted a study to assess the knowledge of aging populations on physical, psychological, and social benefits associated with human-dog interactions. the mean knowledge score was below % and suggested that the benefits of dog ownership should be promoted among the elderly and acknowledged by relevant agencies [ ]. kanamori m, suzuki m, tanaka m ( ) conducted a study on learning needs regarding improvement of quality of life by using a pet shows that knowledge deficit [ ]. the findings of this study are at par with the findings of zasloff rl, kidd ah. ( ) who assessed the knowledge of single women found that % of the women had knowledge deficits regarding benefits of pet ownership [ ]. the present study results showed that majority ( %) of the respondents were not having pets at home, % of the respondents having dog at home, % of the respondents having both dog and cat at home and % of the respondents having only cat. the findings are consistent with findings of downes m, canty mj, more sj ( ) conducted a study to describe the demography of the pet dog and cat populations on the island of ireland. the results showed that, . % of households in ireland have one or more pet dogs and . % of households have one or more pet cats [ ]. the findings are also consistent with findings of schäfer t, merkl j, klemm e, wichmann he, ring j ( ) who tested the association of allergies in humans and their pets. the v study finding inferred that, pets were kept in . % of the households (cats . %, dogs . %, and rodents . %)[ ]. conclusion the study throws significant light on the knowledge of the geriatric clients regarding pet therapy for reducing psychological problems and deliberates the importance of awareness programme regarding pet therapy. the study is also a helpful to develop an information guide sheet on benefits of pet therapy for reducing psychological problems among elderly population. % % % inadequate (< %) moderate ( - %) adequate (> %) http://www.ncbi.nlm.nih.gov/pubmed?term=% knight% s% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% edwards% v% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% kanamori% m% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% suzuki% m% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% tanaka% m% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% zasloff% rl% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% kidd% ah% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% downes% m% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% canty% mj% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% more% sj% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% more% sj% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% sch%c %a fer% t% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% merkl% j% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% klemm% e% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% wichmann% he% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% ring% j% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract page - © mat journals . all rights reserved journal of neurological, psychiatric and mental health nursing volume issue references . old age is the golden age. 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http://www.ncbi.nlm.nih.gov/pubmed?term=% zasloff% rl% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% kidd% ah% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% kidd% ah% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% downes% m% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% canty% mj% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% more% sj% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% more% sj% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract javascript:al_get(this,% 'jour',% 'prev% vet% med.'); javascript:al_get(this,% 'jour',% 'prev% vet% med.'); http://www.ncbi.nlm.nih.gov/pubmed?term=% sch%c %a fer% t% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% merkl% j% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% klemm% e% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% wichmann% he% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract http://www.ncbi.nlm.nih.gov/pubmed?term=% ring% j% % bauthor% d&itool=entrezsystem .pentrez.pubmed.pubmed_resultspanel.pubmed_rvabstract javascript:al_get(this,% 'jour',% 'acta% vet% hung.'); javascript:al_get(this,% 'jour',% 'acta% vet% hung.'); contents lists available at sciencedirect international journal of educational research journal homepage: www.elsevier.com/locate/ijedures the impact of dog therapy on nursing students’ heart rates and ability to pay attention in class odette grisctia,*, liberato camillerib a nursing department, office a h, cape breton university, p.o. box , grand lake road, sydney, nova scotia b p l , canada b department of statistics and operations research, room , maths & physics building, university of malta msida campus, msida, msd , malta a r t i c l e i n f o keywords: animal assisted therapy undergraduate students stress attention vigilance mind wandering emotional support learning environment a b s t r a c t in this study we explored if the presence of a therapy dog has an impact on students’ stress and ability to pay attention in class. the students' heart rates were measured when the dog was present and when he was absent. the students were also asked to fill in a questionnaire. results showed no significant difference in the students’ average and maximum heart rates, between the experimental and control group, however the average resting heart rate was lower when the dog was present. the low resting heart rate coupled with written comments from the students in- dicate that the presence of the dog did reduce stress and had a calming effect on the students. . introduction it is well recognised that university students face multiple stressors during their undergraduate training and that these stressors can impair their physical and mental wellbeing (bayram and bilgel, : furr, westefeld, mcconnell, & jenkins, : ribeiron et al., ; taylor, bramoweth, grieser, tatum, & roane, ). recently, pedagogical concerns have been raised on how stress can also negatively impact academic performance (vaez & laflamme, ). in this study, we explored if introducing a therapy dog into the classroom influences the stress level and attention span of students in attendance as measured by subjective indexes and verbal accounts. . literature review studies have shown that university students experience high levels of stress and culture shock when they transition from college life to university culture (dwyer & cummings, ). university life can present a challenge because of balancing studies with work and life, academic demands and financial constraints (ryan, shochet, & stallman, ). in the health care field, medical and nursing students have been found to face more stress than other disciplines partly due to the demanding nature of clinical practice as well as physical and mental exhaustion associated with the nature of their work and care (elias, ping, & abdullah, ; garg, agarwal, & dalal, ). the effect of stress and failure to cope with these stressors can have negative consequences on students’ health and academic performance. stress in undergraduate students have been linked to negative effects on physical and mental well-being such as lack of https://doi.org/ . /j.ijer. . received august ; received in revised form november ; accepted november ⁎ corresponding author. e-mail addresses: odette_griscti@cbu.ca (o. griscti), liberato.camilleri@um.edu.mt (l. camilleri). international journal of educational research ( ) - / crown copyright © published by elsevier ltd. all rights reserved. t sleep (pagnin & dequeiroz, ; taylor et al., ), fatigue and burnout (domantay, ; pagnin & dequeiroz, ; west, shanafelt, & kolars, ) anxiety and depression (bayram & bilgel, ; domantay, ), and in extreme cases contemplation of suicide (furr et al., ). in a report on mental health that surveyed , students in canada’s colleges and universities (american college health association, ) it was revealed that as much as % of canadian students felt overwhelmed by all the work they had to do, % felt lonely, . % considered suicide, while . % attempted suicide. the relationship between stress and academic achievement in university students was also described in various studies. dwyer and cummings ( ) reported that stress was the most common factor that impacted academic performance in undergraduate students. similar findings were reported in two separate studies by elias et al. ( ) and safree, yasin, and dzulkifli ( ) who reported a significant negative correlation between undergraduate students’ stress level and their academic achievement. in both studies it was found that the more stressed students were, the lower was their academic achievement. all these studies suggest that reducing stress in undergraduate students is not only timely, but also imperative. recently there has been a growing interest in the use of animal-assisted therapy (aat) as an approach to alleviate stress in university students (adamle, riley, & carlson, ). studies on human-animal interactions have shown that aat has a positive effect on well-being by decreasing the level of stress hormones like cortisone (kertes et al., ) and stimulating the release of neurotransmitters like dopamine, oxytocin and endorphins which promote calmness, relaxation and overall well-being (nagasawa et al., ; odendaal & meintjes ; pugliese, famulari, & britti, ). in university settings, studies on undergraduate students have shown how pet therapy was effective in bringing about physiological, psychological and pedagogical changes that benefited students. a study by wood, ohlsen, thompson, hulin, and knowles ( ) revealed that a -minute exposure to a dog significantly reduced blood pressure and self- perceived stress levels in undergraduate students prior exams. these results support findings from an earlier study by barker, barker, mccain, and schubert ( ) who also explored the impact of aat on college students a week prior to their exams. these researchers used different physiological and psychometric measures than the ones used by wood et al. ( ), yet also found that interaction between college students and a therapy dog decreased the students' stress level during exam times. other studies show that aat helped first-year university students to adjust and fill the absence of social support when they moved to university campus or that helped to promote recruitment and retention of students in universities (huss, ). building on these findings, we hypothesize that students who are exposed to the presence of a dog in class would exhibit less stress and pay more attention during class time when a dog was present in comparison when the dog was absent. for this study, stress is defined as “a state of mental or emotional strain or tension resulting from adverse or demanding circumstances” (oxford dictionary, ) while attention is defined as “the behavioural and cognitive process of selectively concentrating on a discrete aspect of information, whether deemed subjective or objective, while ignoring other perceivable information” (anderson, : ). . methodology the purpose of this exploratory trial was to find out if the introduction of a therapy dog into the classroom affected on the stress level of students in attendance and if it had an impact on students’ ability to pay attention in class. the objectives of this study were: . to compare if there are physiological changes in students’ average, maximum and resting heart rate when the dog was present or absent. . to explore if the presence of a dog during class time had an impact on the students’ level of attention in class. the study was conducted in two phases. phase consisted of a randomized, controlled, within-subject exploratory trial. subjective indexes were used to measure the student’s heart rate (hr) when the dog was present and when he was absent. phase involved the collection of subjective accounts from students using a semi structured questionnaire. permission to bring a pet in class was sought from the research ethics board (reb) at the university where the study took place and from the students. no special permission was required from the university to get the dog in class, however since there was a potential risk that the dog may harm the students, the reb required the researcher to certify that the dog in question was given all necessary vaccinations and that his temperament was calm and obedient. another potential risk was that some students could be allergic or afraid of dogs. to safeguard against this, prior to the commencement of the study, the students were asked to write yes/no answer on an anonymous piece of paper, if they agree to have the dog in class or not. emphasis was made to the students to submit a “no” answer if they are allergic or afraid of dogs, or if of any other reason, they preferred not to have the dog in class. all the students consented. the dog was brought to class the following week on designated days of the course. he was left to roam around the class while the lecture was going on. for most of the time the dog would visit the students, who smiled and petted him. at other times he would lie on his blanket at the front of the room and watch what was going on or have a nap data were collected over an -week period from january until march . the students selected for this study were currently enrolled in a specific nursing course at a canadian university in nova scotia. these students were in their second year of the programme and were currently being taught by this course by one of the researchers. . measures . . physiological measurements an optical wrist hr monitor was used to measure the students' hr when the dog was present or absent in class. the wrist hr monitor was designed to monitor a user’s hr continuously for the whole period that the students were in class. the device was able to capture any fluctuations in hr during this period. the students were asked the wear the watch during class time for the whole duration of the class. in total students were monitored on eight sessions: four sessions when the dog was present and four sessions o. griscti and l. camilleri international journal of educational research ( ) when the dog was absent. each classroom session was . h long. readings from the students’ hr monitor was obtained at the beginning, middle and end of class time. besides these values, three other subjective indexes were used to measure the students hr in class: average hr, maximum hr and resting hr. these indexes were automatically generated by the optical wrist hr monitor. a randomized method was used to randomly select nursing students from a class of students enrolled in a nursing course in a university (cluster). the total number of nursing students in the programme was . this yielded a total of observations and guaranteed a maximum margin of error of . % assuming a % confidence level. . . psychological variables to evaluate if the presence of the dog had an influence on the students' learning, a semi-structured questionnaire was distributed to all students on the last day of class (n = ). the purpose of this tool was to gain insight and to identify if the presence of the dog during classroom sessions had an impact on the students’ ability to pay attention. this questionnaire consisted of open-ended questions seeking information about the students’ attitude towards the dog’s presence in class, and if the presence of the dog in the class had an impact on their attention span in class. . data analysis and results . . physiological subjective indexes a total of students participated in the study. this consisted of females and males and their ages ranged from to years (m = . years, sd = . ). the statistical package for social science software (spss version ) was used to analyse the data. . . . trends in average hrs of students for each classroom session fig. illustrates the trajectory of the average student hr at the beginning, midway and end of lecture in each of the eight sessions. the trends were similar for each session, where the hr was at its lowest value at the beginning of the lecture, peaked halfway through the lecture, and returned close to baseline at the end of the lecture. moreover, the error bar graph (fig. ) displays the % confidence intervals of the mean hrs at times , and for all sessions combined. the mean hr at time was significantly higher than times and because the % confidence intervals did not overlap. using the shapiro wilk test, it was found that the hr distributions were skewed and did not satisfy the normality assumption. so, the friedman test (non-parametric) was used to compare the mean pulse rates between these three time slots. moreover, post-hoc tests were used for pairwise comparisons between these mean pulse rates and this was carried out both in the presence and absence of the dog. table shows that when the dog was present, the mean hr at time ( . beats per minute) was significantly higher than the mean hrs at time ( . beats per minute) and time ( . beats per minute). however, the difference between the latter two fig. . mean student hrs, clustered by time of lecture and session. o. griscti and l. camilleri international journal of educational research ( ) hrs was not significant since the p-value ( . ) exceeded the . level of significance (table ). when the dog was absent, the mean hr at time ( . beats per minute) was significantly higher than the mean hrs at time ( . beats per minute) and time ( . beats per minute). however, the difference between the latter two hrs was not sig- nificant since the p-value ( . ) exceeds the . level of significance (table ). the error bar graph (fig. ) displaying the % confidence intervals of the mean hrs at times , and , for the sessions when the dog was present, and the sessions when the dog was absent, complements the results of the post hoc tests. in both cases, the mean hr at time was significantly higher than times and because the % confidence intervals do not overlap. . . . students’ hr averages three averages were measured to find out the overall impact of the presence of the dog during class times: average hr, resting hr and maximum hr. a definition of these terms is provided in table . the shapiro wilk test was used to determine whether the average/maximum/resting hr distribution is normal or skewed. for this test, p-values exceeding the . level of significance indicate that the hr distribution is normal, while p-values less than the . criterion indicate that the hr distribution is skewed (not normal). table shows the results of this calculation. the shapiro wilk p-values showed that the resting and average hr distributions were not normal; both when the dog was present and when he was absent. the histograms clearly display that the hr distributions are left skewed and violate the normality fig. . mean hrs at times , and for all sessions combined. table mean hrs clustered by time of lecture and presence/absence of the dog. time mean hr std. deviation lower bound upper bound p-value dog was present . . . . . . . . . . . . . dog was absent . . . . . . . . . . . . . table post hoc test (dog was present). time time mean hr change std. error p-value cohen’s d . . . . . . . . . . . . o. griscti and l. camilleri international journal of educational research ( ) assumption (figs. and ). on the other hand, the shapiro wilk p-values showed that the maximum hr distributions were normal; both in the presence and absence of the dog. both histograms showed that the hr distributions follow closely the normal curve (fig. ) and for this reason both parametric and non-parametric tests will be used to compare mean hrs between the two groups. the independent samples t-test (parametric test used when the normality assumption is satisfied) and the mann whitney test (non-parametric test used when the normality assumption is violated) were used to compare mean hrs between two independent groups (dog was present, the dog was absent). for both tests, a p-value exceeding the . level of significance indicates no significant difference in the mean hr between the two groups, while a p-value less than the . criterion indicates a significant difference. table post hoc test (dog was absent). time time mean hr change std. error p-value cohen’s d . . . . . . . . . . . . fig. . mean hrs at times , and clustered by presence/absence of the dog. table definition of terms. terminology definition average hr the average number of heart beats for the whole period of class resting hr the number of heartbeats when the heart is completely at rest maximum hr the number of heart beats per minute when the heart was working at its maximum table shapiro- wilk tests of normality. statistic df p-value average hr dog is present . . dog is absent . . resting hr dog is present . . dog is absent . . maximum hr dog is present . . dog is absent . . o. griscti and l. camilleri international journal of educational research ( ) table shows the results obtained from this analysis. the mean resting hr for the group where the dog was present was significantly lower than the mean resting hr for the group when the dog was absent because the p-value ( . ) was less than the . level of significance. however, there was no significant fig. . minimum hr distributions in the presence/absence of the dog. fig. . average hr distributions in the presence/absence of the dog. fig. . shapiro wilk test result for maximum hr. o. griscti and l. camilleri international journal of educational research ( ) difference in the mean maximum and average hrs between the two groups because the p-values ( . and . ) exceeded the . level of significance. so it can be generalized that the resting hr tended to be lower when the dog was present, however, this result cannot be generalized for the average and maximum hrs. . . subjective accounts to elicit further information from the students themselves and find out what was happening during each classroom session, the students present on the last day of the class (n = ) were asked to complete a questionnaire. the questionnaire consisted of semi structured questions which allowed the students to share their feelings about having a dog in class and if the presence of the dog had an impact on their ability to pay attention during the lecture. data from the questionnaires were analysed manually and the semi- structured format facilitated the data reduction process. the comments provided by the participants were grouped into themes and their frequency was recorded. table shows all the themes and corresponding frequencies that were elicited from the students' responses. following this stage, similar themes were clustered together into categories. two main categories emerged from this study. these were: jovial atmosphere, and a positive distraction. . . . jovial atmosphere the title of this category was chosen because it captures the buoyant atmosphere that was created in the class, by the presence of the dog. analysis of the qualitative part of the study consistently indicated that the students enjoyed having the dog in class (n = ). there were no negative remarks about the presence of the dog from any of the students. on the contrary many wrote positive comments about having the dog in class, such as “i wish we had the dogs in more classes” (#s. ) and “i was disappointed when the dog was not there”. (#s. ). overall the presence of the dog created a jovial atmosphere in class with some students remarking that they looked “forward to come to class” (n = ) and they were “excited to come to class because of the dog” (n = ) because “class was fun” (n = ), the dog “changed my bad mood” (n = ), “made me feel happy”(n = ). . . . a positive distraction when students were asked about the impact of the dog on their ability to pay attention in class, a small number of students (n = ) said the presence of the dog had no impact on them and they were able to pay the same amount of attention in class whether the dog was there. for instance, one student wrote “did it make a difference when patches was here? neutral. i paid the same amount of attention when patches was here or not, maybe a little happier when he was here” (#s ). three students (n = ) specifically wrote that having the dog in class helped them to “focus more” on the lecture because “the dog created a calm and relaxed atmosphere” (# s ), “reduced stress in class” (# ) or created “a comfortable classroom environment” (# s ). however, most of the students felt table comparing mean hrs between two groups. dog is: mean hr std. deviation lower bound upper bound p-value cohen’s d average hr present . . . . . . absent . . . . resting hr present . . . . . . absent . . . . maximum hr present . . . . . . absent . . . . table analysis of qualitative data. codes generated frequency (n = ) “enjoyed having the dog in class” “had no impact on my attention in class” “distracted me” (no further details) “distracted me, missed taking down points from the lecture” “positive distraction” “relieved my stress” “made me feel happy” "made me look forward to coming to class" "it was exciting to come to class because of the dog” “class was fun because of the dog” “changed my bad mood” “calmed me” “all classes should have dogs” “helped me to focus more” o. griscti and l. camilleri international journal of educational research ( ) that the dog made their minds wander off from the lecture. two students (n = ) mentioned that when they petted him, they got distracted and they missed jotting down notes related to the lecture. interestingly, although most of the students commented that having the dog in class was a distraction or made their minds wander, they were quick to point that it was a "positive distractive” (n = ). the reason that these students provided to explain why the presence of the dog was a ‘positive distraction” was similar to the rationale that was given by the three other students who stated that the presence of the dog helped them to focus more in class. these students mentioned that the presence of the dog was a “positive distraction” because looking or interacting with the dog in class helped to calm them and to relieve their stress. for example one student wrote “at times it was distractive, but it was a positive distraction – it was calming more than anything”(# s. ), another one mentioned that “if i felt stressed just looking at the dog would make me happy and calm” (#s. ), while another wrote “it was a distraction but not a bad distraction, a nice stress break from constant work” (# ). almost all the students at some point in their questionnaire mentioned that the presence of the dog made them happy (n = ) relieved their stress (n = ) and/or calmed them (n = ), thereby highlighting the positive impact of aat on the students’ mental states. . discussion of findings the purpose of this study was to explore the physiological impact of pet therapy on students and its effect on stress levels and ability to pay attention during class time. results show that the hr of the students followed a certain pattern for each class. the hr was within the normal range at the beginning and at the end of class, yet it peaked and was significantly higher midway through the lecture (fig. ). this pattern is consistent with the physiological changes that one expects to see in hr when a person is engaged in cognitive activity. it is well documented that learning processes such as increased attention, results in an increased hr (thayer & lane, ; wang, pinol, byrne, & mendelowitz, ). according to the neurophysiology science of vigilance, when one is deeply focused on a task, an impulse is sent from the brain to the vagus nerve in the brain stem. this impulse directly inhibits the parasympathetic system (the nervous system which lowers the hr) and stimulates the sympathetic system (the nervous system which stimulates the heart) which takes over and automatically increases the hr (thayer & lane, ; wang et al., ). this pathway is a two-way system, and just as the brain may influence the hr and increase in hr will increase vigilance and alertness (park & thayer, ). vigilance, or sustained attention, is one’s ability to focus on a task for a specific time (okena, salinskya, & elsasa, ). however, attending to unchanging task for a long period of time can lead to vigilance decrement or a decline in vigilance. according to beatty ( ) exposure to an unchanging stimulus, brings the demise of vigilance, and requires a break from the monotony of the task at hand, if attention is to be successfully maintained. beatty ( ) adds on that if this stimulus is not there, vigilance cannot be maintained, and the mind will wander off. one can see this pattern clearly from these students’ hr trends during class time. there was an increase in the hr as the class progressed and the students' curiosity and attention were aroused, and a decrease in hr as their attention declined over time. this hr pattern was similar between both groups, when the dog was there and when he was absent and there was no statistical difference between groups. likewise, there was no significant difference in the average hr and the maximum hr of the students with and without the dog present. based on these physiological findings and the neurophysiology science of vigilance, one can conclude that the students’ attention span during class time was not affected by the presence of the dog. it is interesting to note however, that midway through the class, the students hr was higher (non-significant) when the dog was present than when he was absent. this suggests that even though the presence of the dog left no impact on the students, the students were slightly more aroused when the dog was there, at least midway through the class. the fact that physiologically the dog left little if any impact on the attention of the students, was a surprising result particularly since most of the students admitted that the presence of the dog was a distraction in class that shifted their attention from the lecture. unlike vigilance, mind wandering is an attendant cognitive function that results when a person is no longer being attentive to the task at hand. however, although mind wandering has been repeatedly described as a divergent mental state that has an opposite effect on cognitive processes (vago & zeidan, ), recent research in this field is showing that the extent to which mind wandering impact cognitive performance depends on the stimulus that evokes mind wandering. if the stimulus for mind wandering is pleasant and relaxing, it may reduce stress and improve concentration and cognitive task performance (banks, mccoy, & trzcinski, ). although the purpose of this was not to measure the impact of aat on cognitive function of the students, findings from this study indicate that the presence of the dog in class created a learning environment that facilitated learning. the students in this study specifically mentioned that although the dog was a distraction, this distraction was a “positive distraction” that helped to calm them and relieve their stress. this finding was further supported from the results of the physiological part of the study, which showed that the average resting hr of the students was significantly lower when the dog was there, then when he was absent. any state of relaxation is associated with a high level of parasympathetic stimulation and a reduction in the resting hr (toscani et al., ; verrier et al., ). it follows that the more relaxed a person is, the lower is the hr. therefore, a possible explanation why the average minimum hr of the students was significantly lower when the dog was present than when the dog was absent, could be attributed to the students being more relaxed in class when the dog was there. . general discussion collectively, the findings from this study support previous research. several studies on human-animal interactions, have produced the same or similar results as the current study. for example, gocheva, hund-georgiadis, and hediger ( ) investigated the immediate effects of aat on the concentration and attention span of brain-injured patients during rehabilitation therapy. findings o. griscti and l. camilleri international journal of educational research ( ) from their study revealed that although the participants’ attention span did not differ when the animal was present and when it was absent, patients were more concentrated and alert during aat sessions when the animal was there when compared with control conditions. likewise, in a pre and post-test study by prothmann, bienert, and ettrich ( ) it was found that children and ado- lescents in a psychiatric facility rated themselves as being more attentive, more able to concentrate and being less distracted to the rehabilitation program after interacting with a dog for min. prothmann et al. ( ) concluded that interaction with a dog was mentally and emotionally beneficial for the children and adolescents attending this rehabilitation program. whilst the above studies were focused on patients, other studies were found that focused specifically on students and how aat can induce relaxation and increase human attention and concentration. in a qualitative study which was conducted by one of the authors of this paper and which involved the same dog, the same nursing program, yet a different cohort of nursing students, griscti ( ) reported the presence of the dog during class time, reduced stress and created a positive learning environment for students. although this study was qualitative in nature and methodologically different, the fact that the participants, site and dog were the same as this study, adds strength to results in the current study. similar findings were also reported in a study by chesika and derting ( ) who conducted two studies to explore the effects of dog therapy on the psychological and physiological stress levels of first-year female undergraduates. in the first study , first-year college women were recruited and their blood pressure (bp), hr (hr), and psychological stress and arousal level were measured after interacting with therapy dogs. in the second study, the chitika and dertiong conducted an experimental study with first-year female students ( experimental and control) to find out if interaction with a dog made a difference on the salivary cortisol level, psychological stress and arousal level for a dog-therapy group and a control group. results showed that although there were no significant differences on diastolic bp, hr, or salivary cortisol levels between those the students were exposed to a therapy dog or those who were not, however, there was a significant decrease in psychological stress and increase in psychological arousal when students interacted with therapy dogs in both studies. more recently, banks et al. ( ) conducted a pre-post study to explore the impact of a brief human-canine interaction on college students using subjective measures of sustained attention, mind wandering, perceived stress, cognitive test anxiety, and state anxiety. these researchers also found that although interaction with the therapy dogs did not alter cognitive functions in the students, it did reduce their stress and anxiety during exam time. . conclusion in this study we explored in the introduction of a dog during the class time had an impact on the students’ stress level and ability to pay attention in class. similarly, other studies we found that although the presence of the dog had no impact on the attention span of the students, however, aat was found to reduce stress in students and to create a positive learning environment. based on these findings, we reject the hypothesis that aat has a positive impact on the attention span of students in the class, while we accept the premise that aat can reduce stress levels in students. overall, this study adds to the current literature on the therapeutic effect of pet therapy on mental health and education of undergraduate students. implications from this study may help to promote universities as a pet-friendly environment, that are vested in reducing stress in students and that facilitate learning in a humanistic way. the main strength of this research lies in the design of the study. using the same subjects for experimental and control group increased the level of control in this research and made it easier to detect if there were any differences in findings were due to interaction with the dog or not. this reduced the error variance due to individual differences for every single participant was subjected to the treatment and to the control group. another strength of this study was that we used repeated measures of hr when the dog was present and when he was absent. with the use of repeated measures, we were able to measure the effect of dog therapy over a specific time period. the repeated measures allow for more statistical power since they controlled for factors that may cause variability in the subjects. notwithstanding this study has its limitations. the study is limited to the use of a particular dog of a certain breed, who was calm temperament and who was well behaved in class. it is not known if other dogs and breed would have elicited a similar response. the fact that one of the researchers who conducted the study was also the same professor who was teaching the course at the time and the owner of the dog, may also have led to a social desirability effect when students were asked to share their experiences about having the dog in class. the professor tried to limit this impact by going out of the room when the students filled in the questionnaire and by asking the students not to write their names and to keep them anonymous. finally, the execution of this study was limited by funding and resources. while the physiological tools used for this study were reliable and valid, more sophisticated tools exist that can measure more precisely stress in students, and their attention span during class time. it is recommended that if this study is replicated and if funds are available, physiological measures are monitored using hr variability tools which are better predictors of the impact of cognitive processes on physiological variables. funding cape breton university rp spring grant # the author(s) declare that they have no conflict of interests o. griscti and l. camilleri international journal of educational research ( ) declaration of competing interest the author(s) declare that they have no conflict of interests acknowledgements the authors would like to thank all the student nurses who participated in this study. this study would have not been possible without their willingness to participate. references adamle, k. n., riley, t. a., & carlson, t. 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( ). quality of life, burnout, educational debt, and medical knowledge among internal medicine residents. journal of the american medical association, ( ), – . o. griscti and l. camilleri international journal of educational research ( ) effects of information literacy skills on student writing and course performance archived version from ncdocks institutional repository http://libres.uncg.edu/ir/asu/ effects of information literacy skills on student writing and course performance by: xiaorong shao and geraldine purpur abstract this study documents the information literacy skills of college freshmen at a mid-size comprehensive university. it also examines the association between students' information literacy skills and their writing abilities as well as their overall performance in a class. a major finding of the study is that information literacy skills were positively correlated with both student writing scores and final course grades. the findings of this study call for well-integrated library instruction programs and services to improve student information literacy skills. shao, x. and g. purpur ( ). "effects of information literacy skills on student writing and course performance." the journal of academic librarianship ( ): - . https://doi.org/ . /j.acalib. . . . publisher version of record available at: https://www.sciencedirect.com/science/article/pii/s effects of information literacy skills on student writing and course performance xiaorong shao a,⁎, geraldine purpur b a appalachian state university, college street, asu p.o. box , boone, nc , usa b college street, asu p.o. box , boone, nc , usa keywords: information literacy skills writing skills course grades academic performance a b s t r a c t this study documents the information literacy skills of college freshmen at a mid-size comprehensive university. it also examines the association between students' information literacy skills and their writing abilities as well as their overall performance in a class. a major finding of the study is that information literacy skills were positively correlated with both student writing scores and final course grades. the findings of this study call for well- integrated library instruction programs and services to improve student information literacy skills. introduction developing student critical thinking skills has become essential to the mission of institutions of higher education as employers look for those skills in their new hires. one of the key findings from a national survey of business and nonprofit leaders by the association of american colleges and universities (aac&u) was % of surveyed em- ployers would like their future employees to demonstrate critical think- ing, communication and complex problem solving skills, and the business leaders considered these skills more important than a student's major (aac&u, ). information literacy (il) and critical thinking are higher-order intel- lectual skills required for academic, professional and personal develop- ment and success. these two sets of skills share common goals and intersect in many areas. information literacy includes the ability to lo- cate information, evaluate and use it effectively whereas critical think- ing involves the process of exploring and evaluating ideas in order to make a decision or form an opinion on a topic or problem (wertz et al., ). doyle ( ) stated that “while critical thinking skills pro- vide the theoretical basis for the process, information literacy provides the skills for practical, real world application.” in addition, two similar studies conducted by librarians and faculty members at oregon state university and purdue university, suggested * corresponding author. e-mail addresses: shaox@appstate.edu (x. shao), purpurgm@appstate.edu (g. purpur). the strong connections between information literacy and critical think- ing and writing skills (deitering & jameson, ; wertz et al., ). in response to a major priority of the university of north carolina (unc) system's five-year strategic plan, “our time, our future: the unc compact with north carolina,” the unc general education council was formed in and charged with developing general education goals and assessment tools for system's higher education institu- tions. two core competencies, critical thinking and written communica- tion skills, were recommended as system-wide fundamental requirements for successful mastery in all academic disciplines (ortega & stewart, ). to facilitate the implementation of general education goals and the two core competencies, librarians at appalachian state university (ap- palachian) in north carolina began seeking ways to improve student in- formation literacy skills and started working with teaching faculty members to assess these skills. examining the relationship between in- formation literacy skills and student academic performance was one of many initiatives librarians undertook. during the spring and fall semesters in , librarians at appala- chian conducted a study to document freshmen information literacy skills. the premise of this study is that information literacy skills, as part of critical thinking skills, can be learned through library instruction sessions and when students utilize library resources and services. the findings of this study will help librarians better understand the correla- tion between student information literacy skills, writing abilities and course grades. the ultimate goal of the study was to improve mailto:shaox@appstate.edu mailto:purpurgm@appstate.edu information literacy instruction and library services in order to align li- brary teaching and services more closely with the unc general educa- tion goals for developing student critical thinking and written communication skills. this information literacy skills study follows new directions of higher education reforms, which emphasize teaching for understanding and critical thinking rather than information imparting. librarians have been seeking new ways to help their institution strengthen academic quality, improve access, and increase retention and graduation rates. literature review in the framework for information literacy for higher education by the association of college and research libraries (acrl), information literacy is defined as “the set of integrated abilities encompassing the re- flective discovery of information, the understanding of how information is produced and valued, and the use of information in creating new knowledge and participating ethically in communities of learning” (acrl, ). the acrl information literacy competency standards for higher education indicated that information literacy competency expands learning beyond formal classroom settings and provides indi- viduals with self-directed investigations as they move into internships, professional positions, and growing responsibilities in all aspects of life. information literacy forms the basis for lifelong learning, which is essential to the mission of higher education institutions (acrl, ). information literacy helps develop individuals' intellectual abilities of reasoning and critical thinking and enables them to learn how to learn (acrl, ). the international federation of library associations and institutions (ifla)'s guidelines on informational literacy for lifelong learning, asserts that information literacy skills are key competencies in lifelong learning. they are the first step toward achieving educational goals. the develop- ment of such skills should take place throughout citizens' lives, and es- pecially during their formative years, when librarians, as part of the learning community and as experts in information management, should assume the key role of facilitating information literacy (lau, ). by all accounts, becoming information literate is important for indi- viduals to succeed both academically and professionally. in a report en- titled what matters to student success: a review of the literature, kuh, kinzie, buckley, bridges, and kayek ( ) suggested that information literacy is one of the emerging indicators for student success. the major issue for librarians, however, is to empirically assess the impact of information literacy skills on student success. in this context, the following literature review looks briefly at the methods of assessing information literacy skills and their attempts to gauge the impact of in- formation literacy skills on student academic success in institutions of higher education. information literacy assessment several studies indicated that writing portfolios and research paper bibliographies are useful tools to evaluate students' information literacy learning outcomes. the bibliographies proved to be a good representa- tion of student work because they are reliable and understandable to both librarians and teaching faculty. knight ( ) and samson ( ) from two different academic libraries, used grading rubrics, which was developed based on the course learning objectives and the acrl information literacy competency standards, to evaluate and score the research bibliographies to reflect the student's level of infor- mation literacy. scharf, elliot, huey, briller, and joshi ( ) found a high correlation between the writing scores and information literacy scores, resulting from a writing portfolio study of graduating seniors at the new jersey institute of technology. in addition, a writing project which incorporat- ing information literacy components by white-farnham and gardner ( ) at the university of wisconsin-superior, showed an improve- ment in both student writing and information literacy. effects of information literacy instruction on gpas and retention rates several recent studies focusing on the impact of information literacy on the academic performance of students indicated that information lit- eracy instruction and student information literacy skills were positively correlated with the student grade point averages (gpas), retention and graduation rates. vance, kirk, and gardner ( ) at middle tennessee state univer- sity examined the relationship between formal library instruction and student retention rates and grade point average. two years of student demographic data and library instruction records were used to correlate retention rates and grade point averages among first-year students. data analysis showed that library instruction had no impact on student retention. however, a statistically significant result indicated that stu- dents who had received library instruction had a higher gpa than stu- dents who did not. the results imply the existence of positive influence of formal library instruction on student academic achievement. a similar study took place at the university of wyoming (bowles- terry, ) where librarians used a mixed-method approach to deter- mine whether a correlation existed between information literacy in- struction and grade point average at graduation. academic transcript analysis showed a significant relationship between upper-level library instruction and higher gpa at graduation. in a focus group interview, participants mentioned specific skills or resources learned in library in- structions sessions were helpful for research assignments throughout their academic careers, supporting the premise that information literacy increases student success. effects of library uses on student performance some studies also showed that the number of library services and re- sources students used was correlated with their gpas and retention rates. researchers at the university of minnesota (soria, fransen, & nackerud, ) found a positive association between library uses (such as interlibrary loan service, number of check-outs, database access logins) and gpas as well as student retention rate from first to second semesters. an interesting finding from a study conducted by kot and jones ( ) at georgia state university library, suggested that those who used library study rooms and attended research clinics had the largest utilization of the library resources, and therefore had a higher first-term gpa. zhong and alexander ( ) and cherry, rollins, and evans ( ) reported that those who utilized library services and resources (e.g., reference service, research assistance, database logins) more fre- quently had a higher gpa. collaboration among librarians and faculty a recurring theme in the literature regarding successful implemen- tation of information literacy instruction and assessment is the impor- tance of librarians and faculty working together. knight ( ); samson ( ), and scharf et al. ( ) all reported that librarians and faculty jointly developed effective information literacy measure- ment tools, resulting in significant improvements in the delivery and systematic integration of information literacy skills into the curriculum. other examples include an initiative at carleton college (leebaw, partlo, & tompkins, ), where librarians solicited the help of faculty in their information literacy in a student writing project or portfolio assessment project. faculty provided input on the grading rubric design and partic- ipated as writing paper readers and graders. this cooperation resulted in a much deeper and richer assessment. this was also the case at mid- dlesex county college in new jersey (thompson, ) where librarians and faculty partnered to develop effective lessons incorporat- ing information literacy and critical thinking as well as writing skills al- together. according to thompson ( ), collaboration yielded improvements in the work of their students. the literature review showed that the majority of the studies exam- ined the relationship between information literacy skills and student ac- ademic success, which equates to better student retention rates and higher gpas (vance et al., ; bowles-terry, ; soleymani, ). many of the studies highlighted the benefits of using student work, such as annotated bibliographies and writing portfolios in the as- sessment process (knight, ; samson, ; scharf et al., ; leebaw et al., ). another factor which emerged was the positive outcome resulting in the collaboration of librarians and faculty on infor- mation literacy assessments (white-farnham & gardner, ; knight, ; samson, ; scharf et al., ; leebaw et al., ). many of these collaborations between librarians and writing faculty, showed that integrating information literacy skills into writing assignments has proven to be an effective strategy for improving both skill sets. how- ever, only a few studies specifically looked at the statistical correlation between information literacy and writing skills. a study conducted in by scharf et al. revealed a major correlation between the writing scores and information literacy scores. therefore, the need for further research in this area is warranted. purposes and objectives the purpose of this study is to examine the association between stu- dent information literacy skills and their writing abilities as well as their overall performance in a class. the study's objectives are to: • analyze the correlation between student information literacy skills and their writing skills; • describe the association between student information literacy skills and their course grades; • identify the most important information literacy skills affecting the student writing ability and overall performance; • and assess the effect of library uses on student performance. procedures and methods population of the study the population for this study included freshman students at appala- chian state university who were taking either basic english writing class (eng ) or first year seminar course uco (uco stands for university college) during spring and fall semesters in . ap- proximately freshmen were enrolled at appalachian in . li- brary instruction is a required component for all the first year seminars courses. although it is not required, most of eng course instructors choose to have one-shot library instruction for their classes. to ensure that uco classes meet general education outcomes, a set of common expectations has been developed which includes: “in- volving students in problem-based learning with a research/library component” (appalachian state university, ). although a writing assignment is not a requirement for uco courses, many of the uco instructors assign a research paper as the final project. the re- search and writing process is very similar to the eng classes. all of the uco classes included in this study required the students to write a research paper and meet the source and page-length criteria. the uco and eng curricular are charged with supporting appalachian state university's general education program goals, which includes developing critical and analytical thinking skills and cultivating effective communication skills (writing, speaking, and visual). addition- ally, information literacy skills are built into the assessment criteria for both of these general education goals. each student is required to take three general education courses (i.e., nine credit hours). information literacy skills test development the information literacy skills test for this study was developed based on an extensive literature review, study of the acrl infor- mation literacy standards, and the library research skills assessment surveys used for uco and eng during – period. the test included five parts: research strategies ( questions); resource types ( questions); scholarly vs. popular ( questions); evaluating websites ( questions); and demographic information ( questions). in addition, the test collected information about students' major and class levels during the spring semester. in fall semester , two questions were added to the test: the number of library instruction sessions received and other library services (e.g. individual consulta- tions, online tutorials, service desks, library research guides) students used in order to complete their writing assignments. all questions were multiple choice questions. see appendix a for the information lit- eracy skills test. thirty undergraduate students took the test in a pilot study early in each semester in . cronbach's alphas, measuring the internal con- sistency of the test questions, for four parts (research strategies, re- source types, scholarly vs. popular, evaluating websites) were . , . , . and . respectively. five librarians reviewed the test questions. minor revisions were made to the questions based on the pilot study and librarians' feedback. the information literacy skills test was posted online through selectsurvey. the test was administered by librarians and instructors during regular class meeting times. sample of the study and writing assignments during both spring and fall semesters , librarians contacted the instructors teaching uco and eng and explained the purpose of the study. ten classes met the criteria for the study in spring . seven classes decided to participate in the study. in fall semester , classes were able to participate in the study. in this study, each participating class project must contain a minimal -page writing assignment that cites at least five sources. the sources cited must include one book, two scholarly articles, and two additional reliable and credible sources chosen by the students. all classes incorpo- rate a variety of writing assignments which are geared toward develop- ing critical thinking, reading, and writing skills, and one of them must focus on information research. students are usually required to begin the process by finding background information on their topic using en- cyclopedias. the next step is to develop a thesis statement based on the answer to a question they have posed related to their topic. students then search for books and media in the library catalog and articles in the library databases to support their thesis statement and arguments. they may also search the internet for additional sources. in this study, participating classes requested students analyze the sources they found and compile an annotated bibliography. the annotations must in- clude a summary, evaluation, and reflection. the information research parts were to % of their final writing scores. data collection and analysis the librarians involved in the study offered the same information lit- eracy instruction for the participating classes that they do for other clas- ses. the only difference for this study was that the librarians involved in the study administered the online information literacy skills test toward the end of the semester to allow students time to use other library ser- vices as they work on their writing assignments. the information literacy skills test scores were collected from students in classes taught by eight instructors. the participating students' writing scores and their course scores were obtained through the course instructors. the weight of the writing scores in their final course grades ranged from % to %. data were analyzed using the statistical package for social sciences (spss). both descriptive and inferential statistics were employed to summarize the data. findings demographic information of participants in this study, students from classes completed the informa- tion literacy skills test during two semesters in , of which were freshmen and were sophomores. the average information liter- acy score was . out of points. the intended majors of partici- pants were across the board, with . % in social sciences, . % in natural sciences, . % in humanities, . % in business, and . % in health sciences. . % students reported “undecided” on their majors. association between information literacy test scores, writing scores, and final grades the pearson product-moment correlation coefficients were comput- ed to examine the association between information literacy skills scores, writing assignment scores, and final course scores. the results indicated that information literacy scores were positively and strongly correlated with students' writing scores (n = , r = . , p = . ). in addi- tion, the information literacy scores were positively related to students' final course scores (n = , r = . , p = . ). the findings sug- gested that those who had higher information literacy scores tended to do better both in writing and their overall performance in a class. table presents the results of pearson's correlation coefficients and de- scriptive statistics for information literacy scores, writing scores, and final course scores. the pearson product-moment correlation coefficient is a measure of the strength of the linear relationship between two variables. pearson's r value can range from − to . an r of − indicates a perfect negative linear relationship between variables, an r of indicates no linear rela- tionship between variables, and an r of indicates a perfect positive lin- ear relationship between variables (lane, n.d.). effects of different parts of information literacy skills the results of the pearson's correlation coefficients between differ- ent information literacy skills sets and the student writing and final grades showed that the writing scores were strongly associated with the students' knowledge of “scholarly versus popular sources” (n = , r = . , p = . ). the final course scores were significantly correlated to two sets of information literacy skills: type of sources (n = , r = . , p = . ) and website evaluation (n = , r = . , p = . ). effects of other library services an independent-samples t-test was conducted to examine whether or not using certain library service by students, such as, library research guides, online tutorials, research advisory program (rap), library desk service (lds) would have any effects on their information literacy scores, writing scores and final scores. there were no significant effects found between the variables. however, those who used a research advi- sory program and library desk service tended to have slightly higher in- formation literacy scores, writing scores and final course scores than those who did not use the two services. see table for more information. in addition, a one-way anova was conducted to compare the effect of number of library instruction sessions attended by students on infor- mation literacy skills, writing and final course scores. the results indi- cated that the number of one-shot library instruction sessions was not significantly associated with students' information literacy skills [f ( , ) = . , p = . ], writing scores [f ( , ) = . , p = . ] and final course grades [f ( ) = . , p = . ]. it appears that the students who received more than one instruction session may become uninterested. freshman students at appalachian usually have two to three library instruction sessions from three re- quired general education courses they take. conclusions the findings from this information literacy skills study validate those of previous similar studies and support that information literacy skills, which are part of critical thinking skills, can help improve student writ- ing ability and academic performance. while most previous studies fo- cused the effects of information literacy skills on indicators of student academic success, such as retention rates and gpas, this study not only examines the association between students' information literacy skills and their course performance, but also the correlation between in- formation literacy skills and writing abilities. in addition, this study and other similar studies support that using li- brary services and resources enhances student information literacy skills and thus their overall academic performance (kot & jones, ; soria et al., ; zhong & alexander, ). therefore, it is important for librarians to provide well-integrated library instruction programs and services to improve student information literacy skills. table correlations and descriptive statistics of il skills, writing scores and final grades information literacy skills scores writing assignment scores final course scores information literacy skills scores pearson correlation – . ⁎⁎ . ⁎ sig. ( -tailed) . . writing assignment scores n pearson correlation . ⁎⁎ – . ⁎⁎ sig. ( -tailed) . . final course scores n pearson correlation . ⁎ . ⁎⁎ – sig. ( -tailed) . . n means . . . standard deviation . . . note: ⁎ p b . . ⁎⁎ p b . . table means and standard deviations (sd) of library desk service and research advisory program service n mean sd information literacy skills scores lds did not use . . used . . rap did not use . . used . . writing assignment scores lds did not sue . . used . . rap did not use . . used . . final course scores lds did not use . . used . . rap did not use . . used . . the study also provides an argument for librarians and faculty members to work together to maximize the benefits of teaching students information literacy skills in order to improve their written communication and academic performance. mccracken and johnson ( ) at st. edward's university have offered a good example in their pilot study that librarians and instructors can work collabora- tively and successfully on incorporating new information literacy threshold concepts into information literacy sessions focusing on students writing projects. through partnering with faculty to create curriculum-integrated programs, librarians can actively contribute to students' learning processes in their quest to enhance the skills, knowledge and attitudes needed to become lifelong learners (lau, ). today's academic library, as a learning center on campus, does not just collect, preserve, and organize information. it also conducts teaching, research, and creates knowledge (acrl, ). further- more, the academic library helps students develop transferable skills such as critical thinking and effective communication, which are much needed for their education and career. in this sense, the library has become an integral part of student learning, development, and success. appendix a . library services you have used in order to complete your writing assignments (choose all that apply): a. individual consultation (e.g. rap session) b. c. d. online tutorials library service desks others (e.g.library guides, chat, phone, email,texting...) . when beginninglibrary research,the first step of creating a search strategyis to: a. b. locate books using the library's online catalog search a library database for journal articles c. analyze your topic to identify keywords or phrases d. locate a newspaper article on your topic . you are doing llbrary research for a -page argumentative research paper advocating pet therapy for the elderly. which of the followingis the most logical order in the research a. process? locate books, conduct a web search, follow leads from web sites, and brainstorm keywords. b. c. conduct a web search, locate subject encyclopedi a(s), locate magazine articles, and locate books. locate scholarly journal articles, locate books, conduct a web search, and follow leads from sources. d. brainstorm keywords, conduct a quick web search,locate books, and locate scholarly journal articles. . which of the following keyword examples may yieldthe best results for the statement below in a library database search? statement: "descri be the effects of automobile emissions on air quality." a. automobi le and effects b. automobile and emission and air quality c. effects and emission and quality d. emission and air quality . which source would most likely provide you with objective and non-biased information for the main concepts in the followingstatement? statement: "describe the effects of automobile emissions on air quality" a. the latest annual report from a major automobile manufacturer b. a study featured in a peer-reviewed journal c. a personal interview with an influential lobbyist d. a web site that advocates clean air . you searched for information usin the terms world population and rowth.if you add the term china to your search,(world population and rowth and china) your search will yield: a. same results b. more results c. less results d. none of the above . go to the library homepa e to find the book men in black by john harvey. which of the followingis the correct call number for the book? a. pn engl .c b. bf .c h c. pr .c h d. pn engl .m . edwards,p. n. ( ). a vast machine: computer models,climate data,and the politics of global warming.cambridge,mass: mit press. which of the following best describes the above citation? a. journal article b. book c. chapter in a book d. web document . chandrasekhar,s.,sorial,g.,& weaver,j. { ). dispersant effectiveness on oil spills impact of sallnlty. ices journal of marine science, ( ), - . which of the following best describes the above citation? a. journal article b. book c. chapter in a book d. web document . blanchard,s. ( ): polley analysts: shaping society through research and problem-solvlng. usa.gov retrieved from: http://www. bls.gov/opub/oog/ /spring/art .pdf which of the following best describes the above citation? a. journal article b. book c. chapter in a book d. web document . gonzalez,v. ( ). assessment of blllngual/multillngual pre-k-grade students: a crltlcal discussion of past, present,and futureissues. theoryinto practice, ( ), - . which of the following best describes the above citation? a. journal article b. book c. book chapter d. web document . which of the following best describes an academic book? a. book does not include bibliographic references b. publisher is often a university press/publisher c. book is written for the general public d. author is a lay person,rather than a subject expert . which of the following best describes a popular article? a. article is written by journal ists b. article is written by a subject specialist or expert in the field c. article is peer-reviewed d. article is written for professors and students . which of the following best describes a scholarly article? a. article is written in non-technical language b. article includes a bibliography or list of sources c. article is written for a general audience d. article often reports on current topics or events . is this artlcle scholarly or popular? cilek on the citat on below to view the articlein a new window: ouellette, g.,& senechal,m. ( ). pathways to literacy: a study of invented spelling and its role in learning to read. child development, ( ), - . a. scholarly b. popular http://www/ references appalachian state university ( ). teaching resources. retrieved from http:// firstyearseminar.appstate.edu/teaching-resources. association of american colleges and universities ( ). employers more interested in critical thinking and problem solving than college major. retrieved from https:// www.aacu.org/press/press-releases/employers-more-interested-critical-thinking- and-problem-solving-college-major. association of college & research libraries ( ). framework for information literacy for higher education. retrieved august , from http://www.ala.org/acrl/standards/ ilframework. association of college and research libraries ( ). information literacy competency standards for higher education. chicago: acrl retrieved from http://www.ala.org/ acrl/sites/ala.org.acrl/files/content/standards/standards.pdf. association of college and research libraries ( ). changing roles of academic and research libraries. this essay derives from a roundtable on technology and change in academic libraries, convened by the association of college and research libraries on november – , in chicago. retrieved from http://www.ala.org/acrl/issues/value/changingroles. bowles-terry, m. 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http://refhub.elsevier.com/s - ( ) - /rf http://refhub.elsevier.com/s - ( ) - /rf http://refhub.elsevier.com/s - ( ) - /rf http://refhub.elsevier.com/s - ( ) - /rf http://refhub.elsevier.com/s - ( ) - /rf 	a b s t r a c t 	statement: "describe the effects of automobile emissions on air quality." 	 . edwards,p. n.( ). a vast machine: computer models,climate data,and the politics of hindawi publishing corporation evidence-based complementary and alternative medicine volume , article id , pages http://dx.doi.org/ . / / review article a systematic review of biopsychosocial training programs for the self-management of emotional stress: potential applications for the military cindy crawford, dawn b. wallerstedt, raheleh khorsan, shawn s. clausen, wayne b. jonas, and joan a. g. walter samueli institute, king street, suite , alexandria, va , usa samueli institute, east coast highway, suite , corona del mar, ca , usa walter reed national military medical center, wisconsin avenue, building , room , bethesda, md , usa correspondence should be addressed to cindy crawford; ccrawford@siib.org received may ; revised june ; accepted july academic editor: tobias esch copyright © cindy crawford et al. this is an open access article distributed under the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. combat-exposed troops and their family members are at risk for stress reactions and related disorders. multimodal biopsychosocial training programs incorporating complementary and alternative self-management techniques have the potential to reduce stress- related symptoms and dysfunction. such training can preempt or attenuate the posttraumatic stress response and may be effectively incorporated into the training cycle for deploying and redeploying troops and their families. a large systematic review was conducted to survey the literature on multimodal training programs for the self-management of emotional stress. this report is an overview of the randomized controlled trials (rcts) identified in this systematic review. select programs such as mindfulness- based stress reduction, cognitive behavioral stress management, autogenic training, relaxation response training, and other meditation and mind-body skills practices are highlighted, and the feasibility of their implementation within military settings is addressed. . introduction combat-exposed troops and their family members are at risk for stress reactions and related disorders [ ]. strategies to enhance psychological resilience among service members are needed. providing this training prior to deployment might preempt or attenuate the posttraumatic stress response, depression, anxiety, and other consequences of overwhelm- ing stress. complementary and alternative medicine (cam) and integrative medicine (im) approaches to self-management of emotional stress are increasingly utilized within comprehen- sive care models [ ]. surveys have affirmed the widespread use of integrative modalities in military populations and set- tings, including department of defense (dod) beneficiaries [ ], active duty military [ ], and patients using veterans health administration (vha) hospitals [ – ]. multimodal treatment programs, as compared to single modality treatments, have emerged as an important option in the management of stress disorders [ , ]. compared to treatment with a single modality, multimodal programs have the potential to simultaneously address a range of stress reac- tions, both physical and mental, as well as the dynamic nature of the disease process over time. applied at the population level, the increased variety of modalities potentially has a greater chance of providing viable alternatives for a given individual. the military is already a culture in which self-care is rec- ognized as a vital tool in warfare: adequate nutrition, hydra- tion, and sleep are part of a warrior’s battle kit. therefore, self- management skills that are delivered as multimodal programs involving cam/im may be an ideal option for the military community to help build resilience, reset the autonomic http://dx.doi.org/ . / / evidence-based complementary and alternative medicine nervous system, and ease emotional stress. consequently, in tandem with the mainstreaming of many cam practices in the civilian sector, military personnel may seek cam therapies to improve their health and well-being, especially those cam therapies that are self-manageable and drugless. a number of model biopsychosocial training programs exist in the civilian sector [ – ]. several have adapted their programs to the military [ , – ], and a smaller number have provided training to military personnel [ ]. however, to date, there has been no comprehensive sys- tematic review of multimodal biopsychosocial programs for the self-management of stress. the authors posit that these interventions could be markedly effective for individuals in high-stress environments such as the military. . . purpose of the review. a comprehensive systematic review was conducted to ( ) survey multimodal biopsy- chosocial training programs with at least one cam/im component for the self-management of emotional stress across all populations; ( ) assess the quantity and quality of the research and programs; and ( ) characterize the results by type of program and strength of evidence on stress- related outcome measures. due to the massive amount of the literature included, the full report of this review will be detailed in a much larger report, not suitable for detailing in one paper. the purpose of this current report is to ( ) focus on those studies that were scored as high quality and demonstrated statistically significant results between groups (i.e., intervention group versus control or comparison group) on outcomes of emotional stress for controlled trial study designs; ( ) describe the multimodal programs available and their characteristics; ( ) describe the results of outcomes related to emotional stress; and ( ) discuss what the authors believe to be the resource requirements needed to incor- porate these programs into a military setting for service members and their families. the authors have chosen to report this subset of data since studies assessed as high quality according to internal validity criteria are the least likely to have introduced bias, are more likely replicable, and can be trusted to show a valid effect for the intervention and population being studied [ , ]. if these studies are generalizable to other populations, then it is reasonable to anticipate that an effective program, if implemented in a military environment, could show equivalent benefits for this highly stressed population. . methods . . concepts and definitions . . . biopsychosocial model. the biopsychosocial model (abbreviated “bps”) is a term introduced in by the amer- ican psychiatrist george engel which describes a health care perspective that acknowledges that biological, psychological (which entails thoughts, emotions, and behaviors), and social factors all play a significant role in human functioning in the context of wellness and illness. it is a term that is often used to describe the concept of the “mind-body connection” [ ]. . . . complementary and alternative medicine (cam) modality. cam is defined at the national center for complementary and alternative medicine as: any of a number of “diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine” (http://nccam.nih.gov/). for the purposes of this review, the authors included only cam modalities that also met our criteria for the biopsychosocial model and self-management technique (http://www.ncbi.nlm.nih.gov/mesh/?term=complementary +therapies) and used definitions of cam techniques of breathing, relaxation, yoga, imagery, hypnosis, and med- itation as described by the national center for health statistics on the nccam website: http://nccam.nih.gov/ health/providers/camterms.htm. . . . self-management technique. self-management tech- niques are techniques in which skills are used independently by an individual without ongoing reliance on a trainer or therapist. the authors excluded interventions where patients solely learn and integrate therapies by themselves (such as through a book or online material) or ones that are trainer or therapist dependent (i.e., psychotherapy that requires a therapist to lead the sessions). . . . multimodality interventions. these interventions are defined as those ones that have two or more interventions (at least one of which is cam modality) that require an initial training period with a therapist or trainer in which skills are learned, all of which can be transferred into self-management techniques. the authors only included programs that have multimodal interventions. an example is a program that includes relaxation, exercise, and behavioral techniques to reduce stress. the thought here was that multimodal pro- grams would allow for more of a biopsychosocial approach to treating the whole person for the complexities of emotional stress. . . . types of program. types of programs that the authors considered were those that include training in at least one self-management multimodal training with the intention to reduce psychological or emotional stress. the program did not necessarily have to be an existing named program per se but had to include interventions that could be developed into a program (e.g., a potential program). the authors included educational training programs as long as they met these criteria. . . search strategy. the following electronic databases were searched from database inception through february across keywords identified: pubmed, embase, biosis, cinahl, the entire cochrane library as well as the database of abstracts of reviews of effectiveness (dare), pilots, psycinfo, amed, eric, and dod biomedical research. gray literature was also searched for unpublished trials via the register of the controlled trials databases (http://www.controlled-trials.com/ and http://www.clinicaltrials.gov/), nlm catalog, and nccam http://nccam.nih.gov http://www.ncbi.nlm.nih.gov/mesh/?term=complementary+therapies http://www.ncbi.nlm.nih.gov/mesh/?term=complementary+therapies http://nccam.nih.gov/health/providers/camterms.htm http://nccam.nih.gov/health/providers/camterms.htm http://www.controlled-trials.com http://www.clinicaltrials.gov evidence-based complementary and alternative medicine grantee publications database, communicating with iden- tified experts in the field of cam/im for additional reports of studies not included through traditional searching and pearling references of included articles. . . study selection. studies were included if they involved ( ) research on a program or potential program; ( ) a multimodal intervention incorporating at least one cam modality (as defined by nccam and detailed by the national library of medicine (nlm) http://nccam.nih .gov/health/providers/camterms.htm; http://www.ncbi.nlm .nih.gov/mesh/?term=complementary+therapies); ( ) skills that were learned that could be used as self-management techniques, after a training period; ( ) at least one outcome measure of psychological or emotional stress; ( ) human subjects from any clinical or nonclinical population; and ( ) were presented in the english language. to encompass the construct of “psychological or emotional stress,” studies were included that used outcome measures containing one of the following keywords: stress, anxiety, post-traumatic stress disorder, coping, resilience, hardiness, burnout, distress, or relaxation at the screening phase. since all healthy and clinical populations experience stress (although to varying degrees), the authors elected not to exclude any population based on predefined criteria about their conditions or diagnoses. this was consistent with the authors’ intent to generalize about the value of these programs impacting the symptoms of stress. thus, all populations, both healthy and clinical (e.g., those with specific conditions or diagnoses), were included as long as the report included a description of emotional stress as defined above. types of the literature excluded from this systematic review, were thought pieces, descriptive reviews or published expert opinions. the authors excluded the following interventions: ones in which individuals learned and integrated therapies by themselves; those that involved website training, books, or leaflets as the sole source of the training; pharmacological agents or placebos; and pet therapy. cognitive behavioral therapy (cbt) was not defined as a cam practice by itself but was included when it incorporated another cam technique, such as deep breathing or relaxation exercises that were the predominant feature of the program. all programs had to involve at least one cam modality as described above; no additional medical or psychosocial procedures were included unless the program integrated those procedures with the cam modality for the purpose of stress management. see box for the search terms used. five investigators (cindy crawford, sasha knowlton, raheleh khorsan, dawn wallerstedt, and shawn clausen) individually and independently screened all titles and abstracts in duplicate for relevance based on the inclusion criteria mentioned above. weekly team meetings were held between all five screeners to resolve any and all disagree- ments. . . . quality assessment and data extraction. the method- ological quality of included rct studies was assessed inde- pendently by four reviewers in duplicate using a modified version of the scottish intercollegiate guidelines network (sign ) checklist, a validated and reliable assessment approach widely used in the literature [ ]. three of the sign criteria for assessment of quality were omitted as they did not apply to our research question (see table ). high quality was defined as a sign score equal to + (only - criteria scored as poorly addressed) or ++ ( criteria scored as poorly addressed); that is, some or all of the internal validity criteria have been fulfilled. where they have not been fulfilled, the conclusions of the study were thought unlikely to very unlikely to alter results [ ]. all reviewers were fully trained in the methodology employed. all conflicts were resolved through discussion and consensus or by consulting the senior author. samueli institute developed a rulebook to ensure objectivity in scoring and reliability between reviewers to improve the often subjective assessments in quality criteria scoring in systematic reviews. as detailed above and in table , the individual criteria were “weighted” to account for the omission of criteria that did not apply to this body of literature. . . results. the initial search from the full systematic review yielded , citations from database inception through february , of which reports were deemed suitable to be included, with being rct study designs. see figure for the flow diagram of studies throughout the review phases. this current report includes only those that were rct’s and were scored as high quality and statistically significant results. subsequent planned reports will comment on other study designs available. . . types of programs. the rct studies from the full systematic review were categorized into the following types of programs: those that have been previously character- ized/named ( total): mindfulness-based stress reduction (mbsr), cognitive behavioral stress management (cbsm), autogenic training (at), relaxation response training (rrt), stress inoculation training (sit), anxiety manage- ment training (amt), and coping skills training (cst); and those that have not been previously characterized/named ( total): yoga and similar meditation-based modalities (including programs that incorporated yoga-type techniques as the primary intervention) and relaxation and other similar mind-body skills (including programs that used any relax- ation technique, breathing, guided imagery, self-hypnosis, and/or cognitive behavioral therapy (cbt) as the primary intervention). table displays the number of rct studies, categorized by name of program, quality rating (sign score), and significance level showing between-group differ- ences on stress-related outcome results. of note, very few of the high-quality studies reported negative results. none of the studies that used cst, amt, or sit as an intervention fit the criteria of high quality; therefore, these will not be reported on further in this report but will be described in subsequent publications. detailed descriptions of each of the studies that were of high quality and yielded statistically significant results between groups are displayed in table and described below. because the unnamed programs’ http://nccam.nih.gov/health/providers/camterms.htm http://nccam.nih.gov/health/providers/camterms.htm http://www.ncbi.nlm.nih.gov/mesh/?term=complementary+therapies http://www.ncbi.nlm.nih.gov/mesh/?term=complementary+therapies evidence-based complementary and alternative medicine (program or programme or training or taught or learn∗ or skill∗) and (stress or “stress, physiological” [mesh] or “stress disorders, post-traumatic” [mesh] or “stress, psychological” [mesh] or “stress disorders, traumatic” [mesh]) and (psychosocial or integrat∗ or “alternative medicine” or “complementary medicine” or “alternative therapy” or “complementary therapy” or “complementary and alternative medicine” or “complementary and alternative therapy” or mind-body or imagery or mindfulness or yoga or yogic or biofeedback or “heart-rate variability” or “virtual reality” or breath∗ or “cognitive restructuring” or mantr∗ or acupressure or “body scan” or “autogenic training” or self-care or self-awareness or self-management or reiki or massage or “therapeutic touch” or holistic or wholistic or prayer or writing or “movement therapy” or “dance therapy” or “narrative medicine” or self-acupuncture or qigong or chi or qi or “spiritual healing” or meditat∗ or “mental training” or self-hypnosis or relax∗ or emdr) box : search terms used according to mesh strategy. records identified through database searching and other resources (n = ) records after duplicates removed (n = ) records screened for inclusion at level (n = ) full-text articles screened for eligibility at level (n = ) articles included in the review (n = ) (one being cloned as it consisted of two studies in one so reports) records excluded (n = ) records excluded (n = ) reasons for excluding studies: descriptive reviews, thought pieces, expert opinion, no outcome using emotional stress, not a multimodal training program as defined, no cam intervention as defined, and no self- management skills attained rct’s cct’s sr/ma’s observational descriptive mixed methods figure : flowchart of study selection process. content and heterogeneity varied across studies, the authors provide a full description of the program incorporated in each study in table (b). . . descriptive overview of included high-quality programs . . . mindfulness-based stress reduction (mbsr). mind- fulness-based stress reduction was developed approxi- mately years ago by dr. jon kabat-zinn and now has evolved into a structured group program (http://www .umassmed.edu/cfm/stress/index.aspx). it uses meditation as a tool to cultivate conscious awareness in a nonjudgmen- tal and accepting manner. mbsr has been used to help individuals with stress, chronic pain, anxiety, sleep, and headache, among others [ , ]. the mbsr course schedule generally consists of eight weekly classes and one day-long retreat, including guided instruction on mindfulness medi- tation practices, gentle stretching and mindful yoga, group dialogue and discussions aimed at enhancing awareness in everyday life, individually tailored instruction, daily home assignments, and home practice cds. . . . cognitive behavioral stress management (cbsm). cog- nitive behavioral stress management is a multimodal pro- gram adapted from a variety of meditation and cognitive behavioral strategies and has been used for more than years by a variety of groups. cbsm has been used to help individuals with coping, quality of life, psychological well-being, ptsd, and hiv-related stressors [ ]. cbsm is generally a ten-week group-based program that combines relaxation, imagery, and deep breathing, along with cognitive behavior therapy, which is designed to help reduce bodily tension, intrusive stressful thoughts, and negative moods and improve interpersonal communication skills [ ]. . . . autogenic training (at). autogenic training was developed by the german psychiatrist johannes schultz in . the goal of at is to achieve deep relaxation and reduce stress by teaching the body to respond to verbal commands “telling” it to relax and control breathing, blood pressure, heartbeat, and body temperature [ ]. it includes standardized self-suggestion exercises to make the body feel warm, heavy, and relaxed [ – ]. http://www.umassmed.edu/cfm/stress/index.aspx http://www.umassmed.edu/cfm/stress/index.aspx evidence-based complementary and alternative medicine table : modified sign checklist for rct study design [ ]. (a) section : internal validity∗ item description . the study addresses appropriate and clearly focused question. . the assignment of subjects to treatment groups is randomized. . the treatment and control groups are similar at the start of the trial. . all relevant outcomes are measured in a standard, valid and reliable way. . what percentage of subjects in each treatment arm dropped out before the study was completed? . all subjects are analyzed in the groups to which they were randomly allocated (intention to treat analysis). . where the study is carried out at more than one site, results are comparable for all sites. each item in section is to be evaluated using these criteria: well covered; adequately addressed; poorly addressed; and not applicable (na) only for question . . ∗note that . , . , and . sign criteria were omitted from our modified version of the sign as they did not apply to our research question/population: as there were wide differences in the types of programs assessed. note that all criteria were weighted according to a revised sign quality score as reflected below consistently. (b) section : overall assessment how well was the study done to minimize bias? how valid is the study? score options: ++, +, and−based on the following (modifications to sign criteria in italics). ++ all or most of the criteria have been fulfilled. where they have not been fulfilled, the conclusions of the study are thought“very unlikely” to alter. an article receives this score if there are criteria scored as poorly addressed. + some of the criteria have been fulfilled. those criteria that have not been fulfilled or not adequately described are thought“unlikely” to alter the conclusions. an article receives this score if - criteria are scored poorly addressed. − few or no criteria fulfilled. the conclusions of the study are thought “likely or very likely” to alter. an article receives this score if more than criteria are scored as poorly addressed. sign network: a guideline developer’s handbook http://www.sign.ac.uk/guidelines/fulltext/ /checklist .html. table : randomized controlled trials (𝑛 = ) by sign score and significance level∗. sign quality rating ++ + − ++ + − total significance level∗ 𝑃< . 𝑃> . mindfulness-based stress reduction (mbsr) cognitive behavioral stress management (cbsm) autogenic training (at) relaxation response training (rrt) yoga + similar meditation techniques relaxation + similar mind-body techniques ( ) cognitive-behavioral therapy-based programs ( ) stress-management training programs (smtp) ( ) guided imagery and/or relaxation, and breathing techniques coping skills training (cst) anxiety management training (amt) stress inoculation training (sit) totals ∗on stress-related outcomes with keywords: stress, anxiety, post-traumatic stress disorder, coping, resilience, hardiness, burnout, distress, or relaxation. . . . relaxation response training (rrt). relaxation response training is a stress-management approach first published in by the cardiologist benson et al. [ ]. benson found that meditation was related to general reversal of the sympathetic activation that produces the “stress response” (i.e., decreased oxygen consumption, carbon dioxide production, respiratory rate, and minute ventilation) [ ]. rrt was originally based on transcendental meditation but differentiated into its own technique using the following four elements to elicit the relaxation response: ( ) a mental device (e.g., a sound, word, or phrase repeated silently or audibly to free one’s self from logical, externally oriented thought); ( ) a passive attitude (e.g., not worrying about how well one is performing the technique); ( ) a decreased evidence-based complementary and alternative medicine muscle tonus (e.g., comfortable, relaxed posture); and ( ) a quiet environment with minimal environmental stimuli (e.g., a place of worship) [ ]. . . . yoga + similar meditation-based skills. this miscel- laneous category included studies that were not “named programs” and did not fit into any of the previously charac- terized categories and so were compiled together as a single, distinct category. these interventions met the inclusion criteria as programs that incorporated at least one yoga-based or meditation-based element as primary intervention. see table (b) for a more complete description of each of these programs. . . . relaxation + similar mind-body skills. another mis- cellaneous category also included studies of programs that did not fit into any of the previously named categories. these incorporated at least one relaxation technique (such as progressive muscle relaxation) combined with other modal- ities such as breathing, guided imagery, and/or cognitive- behavioral therapy (cbt). while all of these studies had in common that they integrated at least one relaxation technique, for ease of discussion, the authors have grouped them into three subcategories: those that were based on a cbt model, those that were characterized as “stress- management training programs,” and those that combined relaxation with either guided imagery or breathing tech- niques. cognitive-behavioral therapy is a well-established and effective psychotherapy approach for conditions such as anxiety and depression [ , ], which assist individ- uals to recognize distorted thoughts, devise strategies to reframe them, and change resultant reactions and behaviors (http://www.nacbt.org/). an example of a cbt program that incorporates a relaxation component includes sessions on understanding the nature of stress and stress reac- tions, breathing and/or relaxation techniques, and cognitive restructuring techniques (i.e., self-talk skills to use in stressful situations) [ ]. stress-management training programs (smtps) incor- porate a number of skills and techniques to assist individuals to attenuate their physiological and psychological reactivity to stressful situations, including problem-solving, assertive- ness training, and coping skills with various relaxation tech- niques, such as breathing and progressive muscle relaxation (pmr). in this review, a program was tagged as “smtp” only if the intervention was described using this term. guided imagery (gi) is a relaxation technique that focuses on and directs the imagination to produce thera- peutic change (http://www.healthjourneys.com/) and can be administered by a trained practitioner leading an individual or group session or delivered as a recording. gi frequently includes suggestions for breathing and relaxation, followed by a purposeful directing of the imaginal mind to recreate a relaxing scene with sensory recruitment to enhance a multisensory experience. see table (b) for a more complete description of these programs. . . results of the high-quality studies included. of the mbsr studies included, seven high-quality reports ( ++ and +) were found to produce statistically significant effects on outcomes of distress in rheumatoid arthritis patients [ ]; perceived stress in undergraduate students [ ]; anxiety and perceived stress in cancer patients [ ]; anxiety and distress in premedical students [ ]; anxiety in heart disease patients [ ]; distress in premedical students [ ]; and distress and perceived stress in volunteers with high levels of perceived stress [ ]. of the cbsm studies included, eight high-quality reports ( ++ and +) were found to demonstrate statistically significant effects on outcomes of coping in hiv patients [ ]; everyday life stress in heart disease patients [ ]; anxiety in hiv patients [ ]; anxiety in third semester economic students [ ]; perceived stress in university students [ ]; coping and relaxation in breast cancer patients [ ]; anxiety in breast cancer patients [ ]; and coping in hiv patients [ ]. of the at studies included, three high-quality reports ( +) were found to yield statistically significant effects on outcomes of anxiety in nursing students with anxiety [ ]; anxiety in acute myocardial infarction or coronary artery bypass surgery patients [ ]; and distress in patients with chronic tension headache [ ]. this final study included a combination program consisting of at and self-hypnosis [ ]. of the five studies on rrt included, two high-quality reports ( +) were found to have statistically significant out- comes of psychological distress in healthy undergraduate and graduate students (a program involving rrt and cbt training) [ ] and distress in patients with psychosomatic complaints [ ]. included in the yoga or meditation-based category were three high-quality reports ( +) that were statistically signifi- cant on measured outcomes of the study’s reports. these three studies consisted of yoga, meditation and relaxation, breath- ing or imagery, or a combination of all, which measured perceived stress in participants who had experienced a hurtful interpersonal experience from which they still felt negative emotional consequence [ ] and two studies on women with breast cancer that were statistically significant on outcomes of trait anxiety stress plus state anxiety according to stai (𝑛 = ) [ ] and an integrated yoga program (𝑛 = ) [ ]. in this relaxation-based category, of studies reported statistically significant differences in stress-related outcomes; ( %) were classified as high quality (++ or +). four studies examined cbt-based programs that incorporated relaxation techniques. in a study of patients with severe mental illness and ptsd, an eight-session cbt program with breathing techniques resulted in significant improvements in trauma-related cognitions, anxiety, and ptsd symptoms [ ]. in another study of chronic schizophrenic inpatients, a -hour cbt program with breathing exercises resulted in significant reductions in work-related stress [ ]. in a third study, a -hour cbt program with qi gong (a medi- tative breathing technique) and relaxation exercises resulted http://www.nacbt.org http://www.healthjourneys.com evidence-based complementary and alternative medicine ta bl e : c ha ra ct er is tic so fi nc lu de d st ud ie sw ith hi gh qu al ity an d st at is tic al ly si gn ifi ca nt re su lts be tw ee n gr ou ps on st re ss -r el at ed ou tc om es . (a ) n am ed pr og ra m s c ita tio n po pu la tio n in te rv en tio n/ co nt ro l n um be ra ss ig ne d (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y m in df ul ne ss -b as ed st re ss r ed uc tio n (m bs r ) pr ad ha n et al ., [ ] m al e an d fe m al e rh eu m at oi d ar th ri tis pa tie nt s m ea n ag e: m bs r /w lc t ( % )/ c ( % )( a) . h × w ( h + on e- da y re tr ea t+ ho m ew or k) sc l- (r ev is ed ): ps yc ho lo gi ca ld is tr es s (𝐹 = . , df ,𝑃 = . )a t m on th s( d) si gn ifi ca nt im pr ov em en ti n ps yc ho lo gi ca ld is tr es sa nd % re du ct io n in ps yc ho lo gi ca ld is tr es s am on g th os e tr ea te d ++ ta có n et al ., [ ] w om en w ith he ar t di se as e m ea n ag e: t . ,c . m bs r /w lc t /c ; dr op ou ts : % in ea ch gr ou p (b ) h × w ( h + ho m ew or k + re tr ea t) st a i( st at e an xi et y) : f ( , ) d . ,𝑃 < . (d ) si gn ifi ca nt di ffe re nc es be tw ee n th e tr ea tm en ta nd co nt ro lg ro up so n sc or es of an xi et y, em ot io na l co nt ro l, an d re ac tiv e co pi ng in w om en di ag no se d w ith he ar t di se as e + sh ap ir o et al ., [ ] m al e/ fe m al e m ed ic al st ud en ts ex pe ri en ci ng st re ss m ea n ag e: n d m bs r /w lc t ( % )/ c ( . % )( b) . h × w ( . + ho m ew or k) sc l- (r ev is ed ): ps yc ho lo gi ca ld is tr es sa nd g si (𝑃 < . )a nd st a i an xi et y (𝑃 < . )( d) si gn ifi ca nt ly re du ce d se lf- re po rt ed st at e an d tr ai ta nx ie ty an d re du ce d re po rt so fo ve ra ll ps yc ho lo gi ca l di st re ss in cl ud in g de pr es si on ,a t te rm in at io n of in te rv en tio n + o m an et al ., [ ] un de rg ra du at e st ud en ts m ea n ag e: – m bs r co nd en se d/ ea sw ar an ’s - po in tp ro gr am ep p/ w lc m bs r an d ep p /c ; % to ta ld ro po ut (a ) . h × w ( h) ps s: (𝑃 < . ,c oh en ’s d = . ) si gn ifi ca nt la rg er de cr ea se si n pe rc ei ve d st re ss in th e tr ea tm en t gr ou p co m pa re d to co nt ro l, im pl yi ng th at m ed ita tio n- ba se d st re ss m an ag em en tp ra ct ic es re du ce st re ss am on g un de rg ra du at es ++ sp ec a et al ., [ ] m al e/ fe m al e ca nc er ou tp at ie nt sw ith va ri ou s st ag es of di se as e m ea n ag e: t . ,c . m bs r co nd en se d/ w lc t ( % )/ c ( % )( b) . h × w ( . + ho m ew or k) po m s (a nx ie ty ): 𝑃 < . in tr ea tm en tg ro up fr om tim e t o tim e an d 𝑃 < . be tw ee n th e tw o gr ou ps ;t ot al st re ss sc or e (t ( ) – . , 𝑃 < . )( d) si gn ifi ca nt de cr ea se si n m oo d di st ur ba nc e an d st re ss sy m pt om si n bo th m al e an d fe m al e pa tie nt sw ith a w id e va ri et y of ca nc er di ag no se s, st ag es of ill ne ss ,a nd ag es ++ ja in et al ., [ ] m al e/ fe m al e m ed ic al st ud en ts ,g ra du at e nu rs in g st ud en ts ,a nd un de rg ra du at e st ud en ts m ea n ag e: m bs r co nd en se d (m m )/ st re ss re du ct io n (s r )/ co nt ro lg ro up n d ;d ro po ut s: % , pa rt ic ip an ts ( m m , s r , an d co nt ro ls ) (a ) . h × ( h + ho m ew or k + re tr ea t) bs i: di st re ss fo rm m an d sr ve rs us co nt ro lg ro up (𝑃 < . in al lc as es ). eff ec t si ze sf or di st re ss w er e la rg e fo rb ot h m ed ita tio n an d re la xa tio n (c oh en ’s d = . an d . ,r es p. ) b ot h m m an d sr ar e eff ec tiv e in re du ci ng ne ga tiv e ps yc ho lo gi ca l st at es an d en ha nc in g po si tiv e st at es of m in d fo rs tu de nt se xp er ie nc in g si gn ifi ca nt di st re ss .th er e w er e no si gn ifi ca nt di ffe re nc es be tw ee n m ed ita tio n an d re la xa tio n on di st re ss ov er tim e + evidence-based complementary and alternative medicine (a ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l n um be ra ss ig ne d (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y w ill ia m se ta l., [ ] m al e/ fe m al e co m m un ity vo lu nt ee rs w ith hi gh pe rc ei ve d st re ss m ea n ag e: . m bs r m od ifi ed /g ro up gi ve n ed uc at io na lm at er ia ls on st re ss m an ag em en t an d re fe rr al to co m m un ity re so ur ce s t ( % )/ c ( % )( a) . h × w ( h + on e- da y re tr ea t) d si ,s c l - r (g si ). g si (b et w ee n gr ou p an al ys is ): po st in te rv en tio n w as bo rd er lin e si gn ifi ca nt (𝑃 = . )a nd be ca m e si gn ifi ca nt at - m on th fo llo w up (𝑃 = . )( d) si gn ifi ca nt re du ct io ns in pe rc ei ve d st re ss an d ps yc ho lo gi ca ld is tr es s fo un d bo th be tw ee n gr ou ps an d w ith in tr ea tm en tg ro up fr om pr e- to po st in te rv en tio n + c og ni tiv e b eh av io ra ls tr es sm an ag em en t( c bs m ) m cc ai n et al ., [ ] m al e/ fe m al e h iv + in di vi du al s m ea n ag e: . c og ni tiv e be ha vi or al re la xa tio n tr ai ni ng (r lx n )/ fo cu se d ta i ch it ra in in g (t c h i) /s pi ri tu al gr ow th gr ou p (s pr t )/ w lc u nc le ar (o ve ra ll dr op ou t ra te % )( a) . h × w ( h + ho m ew or k) c op in g su bs ca le of th e d is : 𝑃 < . fo r em ot io n- fo cu se d co pi ng ;t he r lx n an d t c h it re at m en t gr ou ps sh ow ed si gn ifi ca nt to ta lt re at m en te ffe ct so ve r th e co nt ro l( d) in co m pa ri so n to w lc ,b ot h r lx n an d t c h ig ro up sl es s fr eq ue nt ly us ed em ot io n- fo cu se d co pi ng st ra te gi es .g en er al ly , de cr ea se d em ot io n- fo cu se d co pi ng ca n be co ns id er ed an en ha nc em en t in co pi ng st ra te gi es ;h ow ev er ,t he re w as no co nc ur re nt in cr ea se in pr ob le m -f oc us ed or ap pr ai sa l- fo cu se d co pi ng ,m ak in g in te rp re ta tio n of th is ch an ge m or e te nu ou s ++ c la es so n et al ., [ ] is ch em ic he ar t di se as e w om en m ea n ag e: t ,c c bs m /u su al ca re t ( . % )/ c ( . % )( a) h × ( h) el ss :g ro up by tim e in te ra ct io n eff ec tf ro m ba se lin e to fo llo w up 𝑃 = . (d ) a - ye ar c bs m pr og ra m de si gn ed sp ec ifi ca lly fo rw om en si gn ifi ca nt ly im pr ov ed ps yc ho lo gi ca lw el l- be in g in so m e as pe ct si n co m pa ri so n to us ua lc ar e ++ b er ge re ta l., [ ] m al e/ fe m al e h iv -i nf ec te d pe rs on s m ea n ag e: c bs m /s ta nd ar d ca re t ( % )/ c ( % )( a) h × w ( h + ho m ew or k) h a d s (a nx ie ty ): ch an ge s fr om ba se lin e to w ee ks be tw ee n gr ou ps (− . (− . – − . ) 𝑃 = . ) eff ec ts iz e: 𝑑 = . fo r c bs m ba se lin e to m on th s on h a d s an xi et y c bs m tr ai ni ng of h iv -i nf ec te d pe rs on st ak in g ca rt do es no t im pr ov e cl in ic al ou tc om e bu th as la st in g eff ec ts on qu al ity of lif e an d ps yc ho lo gi ca lw el l- be in g + g aa b et al ., [ ] he al th y r d se m es te r ec on om ic ss tu de nt s m ea n ag e: n d c bs m /c on tr ol no t sp ec ifi ed gr ou ps of – su bj ec ts .( c bs m gr ou ps a nd : 𝑁 = ,c on tr ol gr ou ps an d : 𝑁 = ); dr op ou ts :t % /c % (b ) h × d ( h + ho m ew or k) m es a :b et w ee n gr ou ps f ( , ) = . , 𝑃 = . ,s ta i (t ra it) c bs m = st a i( st at e) f ( . / . ) z . , 𝑃 = . .e ffe ct si ze :s ta te an xi et y 𝑓 = . c bs m pr ev en ts in cr ea se si n an xi et y an d so m at ic sy m pt om s pr io rt o an up co m in g st re ss or an d in flu en ce st he ab ili ty to ex er ta co rt is ol re sp on se co rr es po nd in g to th e su bj ec tiv e st re ss ap pr ai sa l + evidence-based complementary and alternative medicine (a ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l n um be ra ss ig ne d (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y g aa b et al ., [ ] m al e st ud en ts m ea n ag e: t . ,c . c bs m /w lc t (u nc le ar )/ c (u nc le ar )( a) h × d ( h + ho m ew or k) ps s: gr ou p by tim e in te ra ct io n eff ec tf ro m ba se lin e to po st tr ea tm en t (t = . ,𝑃 < . ): f ( / ) = . ,𝑃 = . , eff ec ts iz e 𝑓 = . sh or t, gr ou p- ba se d, c og ni tiv e b eh av io ra ls tr es sm an ag em en t tr ai ni ng re du ce st he sa liv ar y fr ee co rt is ol st re ss re sp on se to an ac ut e st re ss or in he al th y m al e su bj ec ts w ith tr ea tm en tg ro up sh ow in g a re du ct io n in th e le ve lo fp er ce iv ed st re ss po st tr ea tm en t + a nt on ie ta l., [ ] fe m al e br ea st ca nc er pa tie nt s( st ag e ii io rl es s) m ea n ag e: c bs m an d re la xa tio n/ co nd en se d ed uc at io na l in te rv en tio n or so ci al su pp or t t ( % )/ c ( % )( b) h × w ( h + ho m ew or k) m c o s: be tw ee n gr ou ps ch an ge sf ro m ba se lin e to w ee ks fo rr el ax at io n (𝑃 = . )a nd co pi ng (𝑃 = . ). eff ec ts iz e c oh en ’s d m c o s re la xa tio n = . ,c op in g 𝑑 = . th e in te rv en tio n in cr ea se d co nfi de nc e in be in g ab le to re la x at w ill .th er e w as al so ev id en ce th at eff ec ts of th e in te rv en tio n on th e va ri ou so ut co m es ex am in ed w er e m ed ia te d by ch an ge in co nfi de nc e ab ou tb ei ng ab le to re la x + a nt on ie ta l., [ ] fe m al e no nm et as ta tic br ea st ca nc er pa tie nt sa ts ta ge ii io rb el ow an d su rg er y w ith in th e pa st w ee ks m ea n ag e: c bs m an d re la xa tio n/ co nd en se d ed uc at io na l in te rv en tio n t ( . % )/ c ( . % )( b) h × w ( h + - ye ar fo llo w up ) h a d s (a nx ie ty ): g ro up eff ec to n sl op e: 𝑧 = . , 𝑃 < . ;c oh en ’s d = . . a ffe ct ba la nc e sc al e (d is tr es s) :g ro up eff ec to n sl op e: 𝑧 = . ,𝑃 < . ; c oh en ’s d = . .g ro up s di ffe ra tt im e (𝑧 = . , 𝑃 < . ;c oh en ’s 𝑑 = . ) st ru ct ur ed ,g ro up -b as ed co gn iti ve be ha vi or st re ss m an ag em en tm ay am el io ra te ca nc er -r el at ed an xi et y du ri ng ac tiv e m ed ic al tr ea tm en tf or br ea st ca nc er an d fo r ye ar fo llo w in g tr ea tm en t + lu tg en do rf et al ., [ ] h iv + m al es m ea n ag e: . c bs m an d re la xa tio n/ w lc w ith on e- da y di da ct ic an d ex pe ri en tia ls tr es s m an ag em en tp ro gr am t ( % )/ c ( % )( b) m × w ( . h + ho m ew or k) c o pe ( - ite m sc al e) fo r co pi ng :( 𝑃 < . )( d) si gn ifi ca nt ly gr ea te ri m pr ov em en t in ac tiv e co pi ng th an co nt ro ls . g ro up -b as ed c bt + st re ss m an ag em en ts ig ni fic an tly at te nu at ed an xi et y in h iv -p os iti ve m en + a ut og en ic tr ai ni ng (a t ) tr zc ie ni ec ka -g re en an d st ep to e, [ ] m en an d w om en ad m itt ed to ho sp ita ls fo r ac ut e m yo ca rd ia l in fa rc tio n (w h o cr ite ri a) or co ro na ry ar te ry by pa ss su rg er y m ea n ag e: < a ut og en ic tr ai ni ng /w lc t (n d )/ c (n d )( c) se ss io ns (n d ) h a d (a nx ie ty ): gr ou p by tim e in te ra ct io ns 𝑃 < . , an d at fo llo w up 𝑃 < . (d ) si gn ifi ca nt re du ct io ns in an xi et y in tr ea tm en tg ro up .s tr es s m an ag em en tt ra in in g m ay le ad to im pr ov em en ts in th e qu al ity of lif e of m yo ca rd ia li nf ar ct io n an d co ro na ry ar te ry by pa ss pa tie nt s + evidence-based complementary and alternative medicine (a ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l n um be ra ss ig ne d (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y k an ji et al ., [ ] m al e/ fe m al e nu rs in g st ud en ts a ge ra ng e: – a ut og en ic tr ai ni ng /a tte nt io n co nt ro lu si ng la ug ht er th er ap y/ tim e co nt ro l w ith no tr ea tm en t t ( % )/ at te nt io n co nt ro l ( % )/ tim e co nt ro l ( % ) (a ) h × w ( h + ho m ew or k) st a i: st at e an xi et y be tw ee n tr ea tm en ta nd tim e co nt ro l (𝑃 < . )b et w ee n tr ea tm en tg ro up an d at te nt io n co nt ro l (𝑃 < . ), an d be tw ee n th e tw o co nt ro lg ro up s (𝑃 < . ). tr ai ta nx ie ty be tw ee n th e tr ea tm en ta nd tim e co nt ro lg ro up s (𝑃 < . )a nd be tw ee n th e tr ea tm en tg ro up an d th e at te nt io n co nt ro lg ro up (𝑃 < . )( d) a ut og en ic tr ai ni ng is si gn ifi ca nt ly m or e eff ec tiv e in re du ct io n of st at e an d tr ai ta nx ie tie st ha n in bo th ot he rg ro up si m m ed ia te ly aft er tr ea tm en t + sp in ho ve n et al ., [ ] m al e/ fe m al e pa tie nt s w ith te ns io n he ad ac he m ea n ag e: a ut og en ic tr ai ni ng an d se lf- hy pn os is (s h )/ w lc n d (b ) m × ( h + ho m ew or k + bo os te rs ) sc l :p sy ch ol og ic al di st re ss 𝑃 < . at po st tr ea tm en ta nd le ve lo f ps yc ho lo gi ca ld is tr es si n co nt ra st to th e w ai tin g- lis t pe ri od (𝑃 < . ). fo llo w -u p m ea su re m en ts in di ca te d th at th er ap eu tic im pr ov em en t w as m ai nt ai ne d (𝑃 < . ). c sq :𝑃 = . at po st tr ea tm en t( d) pa tie nt st re at ed w ith a t or sh tr ai ni ng ac hi ev ed m od er at e re du ct io ns in ps yc ho lo gi ca ld is tr es s an d sh ow ed st at is tic al ly si gn ifi ca nt re du ct io ns in di st re ss co m pa re d to w lc + evidence-based complementary and alternative medicine (a ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l n um be ra ss ig ne d (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y r el ax at io n r es po ns e tr ai ni ng (r rt ) d ec kr o et al ., [ ] m en an d w om en st ud en ts m ea n ag e: r el ax at io n r es po ns e an d c bt tr ai ni ng /w lc t ( % )/ c ( % )( b) . h × ( h + ho m ew or k) g si (s c l- -r ) (p sy ch ol og ic al di st re ss ); be tw ee n gr ou p an al ys is fr om ba se lin e to po st in te rv en tio n: (𝑃 = . ). ps s: w ith in gr ou p an al ys is :p re -p os t sc or es fo ri nt er ve nt io n ve rs us co nt ro lg ro up (𝑃 = . ); st a is ta te an xi et y (𝑃 = . )( d) a - w ee k r r an d c bt tr ai ni ng pr og ra m si gn ifi ca nt ly re du ce se lf- re po rt ed ps yc ho lo gi ca l di st re ss ,a nx ie ty ,a nd th e pe rc ep tio n of st re ss + h el lm an et al ., [ ] m al e/ fe m al e pa tie nt s w ith ps yc ho so m at ic co m pl ai nt s m ea n ag e: r el ax at io n r es po ns e tr ai ni ng /s tr es s m an ag em en t in fo rm at io n gr ou p w ay st o w el ln es s /m in d/ bo dy pr og ra m /s tr es s m an ag em en t in fo .g ro up ; % to ta l dr op ou ts (b ) w t w an d m bp : . h × w ( h + ho m ew or k) , sm g : . h × ( h) b- po m s: be tw ee n gr ou ps an al ys is -p sy ch ol og ic al di st re ss fo rb ot h w t w an d m b gr ou ps (𝑡 = . , 𝑃 < . ), a de cl in e th at w as si gn ifi ca nt ly gr ea te rt ha n th at fo rt he in fo rm at io n gr ou p (𝑃 < . )( d) a tt he - m on th fo llo w up ,p at ie nt s in th e be ha vi or al m ed ic in e gr ou ps sh ow ed si gn ifi ca nt ly gr ea te r re du ct io ns in vi si ts to th e h m o an d in di sc om fo rt fr om ph ys ic al an d ps yc ho lo gi ca ls ym pt om st ha n di d th e pa tie nt si n th e in fo rm at io n gr ou p + (b ) u nn am ed pr og ra m s c ita tio n po pu la tio n in te rv en tio n/ co nt ro l d es cr ip tio n of pr og ra m n um be r as si gn ed (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y yo ga + si m ila rm ed ita tio n- ba se d sk ill s h ar ri se ta l., [ ] m al e/ fe m al e pa rt ic ip an ts w ho ha d ex pe ri en ce d a hu rt fu l in te rp er so na l ex pe ri en ce fr om w hi ch th ey st ill fe lt ne ga tiv e em ot io na l co ns eq ue nc es m ea n ag e: . m ed ita tio n an d im ag er y/ no tr ea tm en tc on tr ol c om bi na tio n of co gn iti ve re st ru ct ur in g po si tiv e an d ne ga tiv e vi su al iz at io ns an d he ar t- fo cu se d m ed ita tio n te ch ni qu es . ti m e w as de vo te d to ed uc at io n ab ou tt he ne ga tiv e he al th co ns eq ue nc es of gr ud ge -h ol di ng an d un fo rg iv en es s, co gn iti ve re st ru ct ur in g, an d m ed ita tio ns /r el ax at io n ex er ci se s. ex er ci se su se d in th e tr ai ni ng w er e pr in ci pa lly ta ilo re d to in st ill an d cu lti va te a m or e re la xe d st at e, to re du ce ar ou sa l du ri ng th e re co lle ct io n of in te rp er so na l gr ie va nc es ,a nd to im pr ov e pa rt ic ip an ts ’ ab ili ty to re gu la te em ot io ns by co ns ci ou sl y sh ift in g at te nt io n be tw ee n ne ga tiv e an d m or e ne ut ra lo rp os iti ve th in ki ng an d fe el in g st at es t ( % )/ c ( % )( b) . h × w ( h) ps s pe rc ei ve d st re ss (𝑃 < . ). eff ec t si ze :c oh en ’s d fo r ps s . at po st te st an d . at fo llo w up si gn ifi ca nt tr ea tm en t eff ec ts w er e fo un d fo r fo rg iv en es s se lf- effi ca cy , fo rg iv en es s ge ne ra liz ed to ne w si tu at io ns ,a nd pe rc ei ve d st re ss + evidence-based complementary and alternative medicine (b ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l d es cr ip tio n of pr og ra m n um be r as si gn ed (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y n un es et al ., [ ] fe m al e br ea st ca nc er pa tie nt s m ea n ag e: t . ,c . m ed ita tio n, re la xa tio n, br ea th in g, an d im ag er y: re la xa tio n an d vi su al th er ap y (r v t )/ no in te rv en tio n r el ax at io n an d vi su al iz at io n th er ap y (r v t )i nt er ve nt io n in cl ud es a re la xa tio n pe ri od ( m in ), in w hi ch th e su bj ec ti s in du ce d to m en ta lly cr ea te an im ag e of th e de si re d ob je ct iv e or re su lt, in cl ud in g pr og re ss iv e m us cl e re la xa tio n, gu id ed im ag er y, m ed ita tio n, an d de ep br ea th in g. su bj ec ts w er e gu id ed to cr ea te a m en ta l im ag e in w hi ch th ei rt um or is at ta ck ed by th ei ri m m un e sy st em an d th en to vi su al iz e th e br ea st co m pl et el y he al ed t /c ( % )( b) . h × ( h + ho m ew or k) is sl ,s ta i: w ith in gr ou ps (p re -v er su s po st ex pe ri m en ta l gr ou p) :i ss l q 𝑃 < . ,q 𝑃 < . ,q 𝑃 < . .s ta i (s ta te )𝑃 < . ,t ra it 𝑃 < . .th e ps yc ho lo gi ca ls co re s di d no tc ha ng e ov er tim e in th e co nt ro l gr ou p (a ll 𝑃 > . ). eff ec ts iz es :s sl q . is sl q . is sl q . st a i( st at e) . st a i( tr ai t) . rv t is eff ec tiv e fo r re du ci ng st re ss , an xi et y, an d de pr es si on sc or es an d m ay im pr ov e th e qu al ity of lif e of ca nc er pa tie nt s un de rg oi ng ra di ot he ra py + r ag ha ve nd ra et al ., [ ] fe m al e br ea st ca nc er ou tp at ie nt s m ea n ag e: n d yo ga ,b re at h- in g/ ps yc ho dy na m ic su pp or tiv e- ex pr es si ve th er ap y w ith co pi ng pr ep ar at io n yo ga in te rv en tio n co ns is te d of a se to f as an as (p os tu re sd on e w ith aw ar en es s) , br ea th in g ex er ci se s, pr an ay am a (v ol un ta ri ly re gu la te d no st ri lb re at hi ng ), m ed ita tio n, an d yo gi c re la xa tio n te ch ni qu es w ith im ag er y. th es e pr ac tic es w er e ba se d on pr in ci pl es of at te nt io n di ve rs io n, m in df ul aw ar en es s, an d re la xa tio n to co pe w ith da y- to -d ay st re ss fu le xp er ie nc es .th e fir st se ss io n co ns is te d of yo gi c re la xa tio n, m ed ita tio n us in g br ea th aw ar en es s, an d im pu ls es of to uc h em an at in g fr om pa lm sa nd fin ge rs or ch an tin g a m an tr a fr om a ve di c te xt fo r m in .s ub je ct si n th e yo ga gr ou p w er e pr ov id ed w ith au di o an d vi de o ca ss et te s of th e yo ga m od ul es fo rh om e pr ac tic e; th es e ho m e se ss io ns st ar te d w ith a fe w ea sy yo ga po st ur es ,b re at hi ng ex er ci se s an d pr an ay am a (v ol un ta ri ly re gu la te d no st ri lb re at hi ng ), an d yo gi c re la xa tio n t /c l ( % )( b) y r m (. h + ho m ew or k) c ou ns el in g h ; co nt ro l. h st a is ta te an xi et y sc or e: be tw ee n gr ou ps an al ys is 𝑃 < . . su bj ec tiv e qu es tio nn ai re s: nu m be ro f di st re ss fu l sy m pt om s 𝑃 = . ;s ym pt om di st re ss :𝑃 < . (d ) th er e w as a si gn ifi ca nt de cr ea se in re ac tiv e an xi et y st at es , de pr es si on ,n um be r of tr ea tm en t- re la te d di st re ss fu ls ym pt om s, se ve ri ty of sy m pt om s an d di st re ss ex pe ri en ce d, an d im pr ov em en ti n qu al ity of lif e du ri ng ch em ot he ra py in th e yo ga gr ou p as co m pa re d w ith co nt ro l + evidence-based complementary and alternative medicine (b ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l d es cr ip tio n of pr og ra m n um be r as si gn ed (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y r el ax at io n + si m ila rm in d- b od y sk ill s m ue se re ta l., [ ] se ve re m en ta li lln es s m al e/ fe m al e pa tie nt s m ea n ag e: . c bt an d br ea th in g/ ta u w ith su pp or tiv e co un se lin g as ne ed ed c bt pr og ra m fo rp t sd in cl ud ed m od ul es :i nt ro du ct io n, cr is is pl an re vi ew , ps yc ho ed uc at io n (s ym pt om so fp t sd ), br ea th in g re tr ai ni ng ,p sy ch o- ed uc at io n (a ss oc ia te d sy m pt om so fp t sd ), co gn iti ve re st ru ct ur in g (c om m on st yl es of th in ki ng ), co gn iti ve re st ru ct ur in g ii ( st ep so fc og ni tiv e re st ru ct ur in g) , ge ne ra liz at io n tr ai ni ng ,a nd te rm in at io n c bt pr og ra m ( % )/ tr ea t- m en ta s us ua l( ta u ) pr og ra m ( % )( a) n d pt c i, ba i, c a ps : be tw ee n gr ou ps an al ys is c bt ve rs us ta u (b as el in e ve rs us po st in te rv en tio n) : pt c i𝑃 < . ; ba i𝑃 < . ,c a ps d x 𝑃 = . ,c a ps d x (> )𝑃 = . , c a ps d x (< ) 𝑃 = . .p os th oc an al ys is :s ub se tw ith se ve re pt sd (c a ps > ). eff ec ts iz es fo r bo th c a ps -t ot al in cr ea se d, fr om . to . an d in c a ps -d ia gn os is fr om . to . . su bs et w ith m ild -m od er at e pt sd (c a ps < ) th e eff ec ts iz es de cr ea se d to . an d . ,r es pe ct iv el y fi nd in gs su gg es tt ha t cl ie nt sw ith se ve re m en ta li lln es sa nd pt sd ca n be ne fit fr om c bt an d br ea th in g, de sp ite se ve re sy m pt om s, su ic id al th in ki ng , ps yc ho si s, an d vu ln er ab ili ty to ho sp ita liz at io ns ++ h ei de n et al ., [ ] m al e/ fe m al e pa tie nt so n si ck le av e fo ra tl ea st % of th e tim e fo rs tr es s- re la te d di ag no se s m ea n ag e: c bt an d re la xa tio n te ch ni qu es /p hy si ca l ac tiv ity /u su al ca re c og ni tiv e in te rv en tio n fo cu se d on ed uc at io n, qi go ng an d re la xa tio n te ch ni qu es ,c op in g sk ill s, an d st re ss m an ag em en te xe rc is es .p ar tic ip an ts in th e ph ys ic al ac tiv ity gr ou p w er e off er ed ex er ci se se ss io ns .p ar tic ip an ts ch os e an ex er ci se (e .g ., st re ng th tr ai ni ng , sw im m in g, ae ro bi cs ,o rw al ki ng )i n co ns ul ta tio n w ith th e gr ou p le ad er . d ur in g th e in te rv en tio n, ea ch pa rt ic ip an t ke pt a di ar y of th ei rp hy si ca le xe rc is e c bt ( % )/ ph ys . ( . % )/ co n- tr ol ( . % )( a) h × × w ( h + ho m ew or k) b q :b et w ee n gr ou ps (f ( , ) = . , 𝑃 = . ). by m on th st he di ffe re nc es w er e no t si gn ifi ca nt 𝑃 = . (d ) c bt gr ou p re du ce d th ei rb ur n- ou tr at in gs co m pa re d w ith th e co nt ro lg ro up by th e en d of th e in te rv en tio n. a t fo llo w up ,t he se di ffe re nc es fa de d + evidence-based complementary and alternative medicine (b ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l d es cr ip tio n of pr og ra m n um be r as si gn ed (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y le e et al ., [ ] m al e/ fe m al e pa tie nt sw ith ch ro ni c sc hi zo ph re ni a w ho en ga ge d in le ve l or of th e ce nt er ’s pa rt tim e pa id jo b pr og ra m m ea n ag e: . c bt an d br ea th in g/ w lc th e w or k- re la te d st re ss m an ag em en t pr og ra m in cl ud ed sh or tl ec tu re so n th e in flu en ce so fs tr es so n co gn iti on , em ot io n, an d be ha vi or ;i ns tr uc tio n in th e te ch ni qu es of ha nd lin g ne ga tiv e em ot io ns an d st re ss (e .g ., de ep br ea th in g, st ru t (w al ki ng pr ou dl y) ,a nd ex er ci se )a nd em ot io na li nt el lig en ce .s ev er al se ss io ns w er e de vo te d to co m m un ic at io n, sk ill s tr ai ni ng ,a ss er tiv en es st ra in in g, an d pr ob le m -s ol vi ng sk ill st ra in in g. fi na lly , m et ho ds de al in g w ith w or k- re la te d cr is es w er e pr es en te d an d pr ac tic ed to ta l o nl y dr op ou t to ta l( b) h × w ( h + ho m ew or k) w sq p: be tw ee n gr ou ps an al ys is fr om fir st to se co nd te st in g pe ri od ( w ee ks ): to ta lw sq p st re ss sc or e 𝑃 = . .p oo lin g da ta fr om bo th -w ee k tr ea tm en t pe ri od s, tr ea tm en t eff ec tf or th e ch an ge in to ta lw sq p sc or es (𝑃 = . ). eff ec ts iz e: 𝑟 = . w or k- re la te d st re ss m an ag em en tp ro gr am ha d la rg e sh or t- te rm po si tiv e eff ec ts on pa tie nt s’ pe rc ei ve d w or k- re la te d st re ss . th es e fin di ng s su pp or tp ro vi di ng th is ty pe of pr og ra m to em pl oy ed pa tie nt s w ith sc hi zo ph re ni a + k ro en er -h er w ig an d d en ec ke , [ ] ou to f w ho m et th e in cl us io n cr ite ri a, m al e/ fe m al e pe di at ri c he ad ac he pa tie nt s m ea n ag e: . c bt an d re la xa tio n (t g )/ se lf- he lp (s h ) co nt ro lg ro up fo llo w in g th e sa m e pr og ra m ex ce pt th at tr ea tm en td on e th ro ug h th e us e of a m an ua l/w lc m ai n to pi cs t g :s es si on i sa n in tr od uc tio n to th e tr ai ni ng as w el la s ed uc at io n ab ou th ea da ch e. se ss io n de di ca te d to th e ac qu is iti on of pr og re ss iv e re la xa tio n te ch ni qu es .s es si on in tr od uc ed th e pe rc ep tio n of st re ss sy m pt om s, th e ro le of st re ss re ga rd in g he ad ac he an d ho w to co pe w ith st re ss . se ss io n in tr od uc ed th e ch ild re n to th e si gn ifi ca nc e of dy sf un ct io na la nd fu nc tio na lc og ni tio ns re ga rd in g st re ss an d he ad ac he .s es si on ex pl ai ne d th e ro le of at te nt io n on pa in ex pe ri en ce an d in tr od uc ed po si tiv e im ag er y as m ea ns to di st ra ct at te nt io n fr om pa in an d at ta in a re la xe d st at e. in se ss io n , se lf as se rt iv e be ha vi or w as th e m ai n to pi c. se ss io n off er ed a m od el fo rg en er al pr ob le m so lv in g. se ss io n ga ve a su m m ar y of al l sk ill s. t g /s h /w lc d ro po ut : % (u nc le ar as to w hi ch gr ou ps )( b) . h × w ( h) th e “c op in g w ith st re ss ” su bs ca le of th e st re ss qu es tio nn ai re :t g an d sh co m pa re d to w lc ov er al l (𝑃 = . )( d) th e effi ci en ci es of th e tw o tr ai ni ng fo rm at s ar e ne ar ly id en tic al . b ot h gr ou ps si gn ifi ca nt ly re du ce d st re ss as co m pa re d to th e w lc .th e gr ou p fo rm at ,b ec au se of its be tte ra cc ep ta nc e, is re co m m en de d fo r pr ac tic al us e + evidence-based complementary and alternative medicine (b ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l d es cr ip tio n of pr og ra m n um be r as si gn ed (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y pr ui tt, [ ] m al e/ fe m al e u s ar m y em pl oy ee s a ge ra ng e: – sm t p w ith re la xa tio n/ co nt ro l gr ou p w ith de la ye d cl as sa tte nd an ce at th e en d of te st in g pe ri od th e st re ss m an ag em en tc ou rs e in th e “f it to w in ” pr og ra m co ns is te d of st ra te gi es in vo lv in g st re ss aw ar en es sa nd pr in ci pl es of ho m e m an ag em en t, en vi ro nm en ta l m od ifi ca tio n, an d as se rt iv en es s, as w el la s m ul tip le m et ho ds of re la xa tio n. a n au di o ca ss et te of re la xa tio n st ra te gi es w as av ai la bl e fo rh om e pr ac tic e t /c ; dr op ou ts : n d (b ) n d st a i: pr et es tt o po st te st be tw ee n gr ou ps f ( , ) = . 𝑃 = . sc l- :p re te st to po st te st be tw ee n gr ou ps f ( , ) = . 𝑃 = . (d ) th er e w as no st at is tic al ly si gn ifi ca nt di ffe re nc e be tw ee n gr ou ps fo rs ta te an xi et y. th e la ck of si gn ifi ca nc e is pr im ar ily du e to im pr ov em en ts in th e co nt ro lg ro up m em be rs al so pa rt ic ip at in g in th e ov er al lw el ln es s pr og ra m .th er e w as a si gn ifi ca nt ov er al l im pr ov em en tf or th e co m bi ne d gr ou ps in re la tio n to al lf ou r va ri ab le s (s tr es s- re la te d ph ys ic al sy m pt om s, pe rc ep tio n of an xi et y, an d sy st ol ic an d di as to lic bl oo d pr es su re ). th er e is be ne fit to th is pr og ra m w ith ov er al l lo w co st + si ng er et al ., [ ] m al e/ fe m al e pa re nt so f ch ild re n w ith se ve re ha nd ic ap s m ea n ag e: n d sm t p w ith re la xa tio n/ co nt ro l le ct ur es ,d em on st ra tio ns ,a nd di sc us si on fo cu se d on se lf- m on ito ri ng of st re ss an d ph ys io lo gi ca lr ea ct io ns to st re ss ,m us cl e re la xa tio n, an d re st ru ct ur in g/ m od ify in g co gn iti ve di st or tio ns re la te d to st re ss t /c ; dr op ou ts : n d (b ) h × w ( h) st a i: an al ys is of co va ri an ce (c on tr ol lin g pr ei nt er ve nt io n sc or es )s ta te an d tr ai ta nx ie ty f ( , ) = . ,𝑃 = . (d ) th e tr ea tm en tg ro up im pr ov ed si gn ifi ca nt ly on m ea su re so f de pr es si on an d an xi et y + evidence-based complementary and alternative medicine (b ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l d es cr ip tio n of pr og ra m n um be r as si gn ed (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y de jo ng an d em m el ka m p, [ ] m al es /f em al es re cr ui te d th ro ug h em pl oy er s m ea n ag e: sm t p w ith re la xa tio n (d iff er en t gr ou ps of w or ke rs )/ as se ss m en t of on ly co nt ro l gr ou p th e sm t pr og ra m ta ug ht pa rt ic ip an ts a va ri et y of ac tiv e co pi ng st ra te gi es co ve ri ng th e fo llo w in g el em en ts :( a) pr og re ss iv e m us cl e re la xa tio n, (b ) pr ob le m -s ol vi ng tr ai ni ng ,( c) as se rt iv en es ss ki lls tr ai ni ng ,a nd (d ) ra is in g aw ar en es so fi nd iv id ua ls tr es so rs , st re ss re ac tio ns ,c op in g st yl e or st yl es ,a nd (u n) he al th y lif es ty le .a tt he ou ts et of ea ch se ss io n, an ou tli ne d ag en da w as pr ov id ed . a ge nd as in cl ud ed th eo re tic al le ct ur es , ex er ci se s( i.e ., re la xa tio n an d pr ob le m -s ol vi ng ex er ci se sa nd be ha vi or al ro le pl ay w ith ot he rg ro up m em be rs ), an d ho m ew or k as si gn m en ts sm tp sy ( % )/ sm t pa ra ( % )/ co n- tr ol s ( % )( b) . h × w ( h + ho m ew or k) g h q fo rg en er al di st re ss an d st a i (t ra it) :d iff er en ce be tw ee n th e in te rv en tio n an d co nt ro lf or bo th m ea su re s 𝑃 < . (d ) r es ul ts sh ow fa vo ra bl e eff ec ts of th e sm t pr og ra m bo th in th e sh or tt er m an d at - m on th fo llo w up . r es ul ts sh ow ed no se ri ou sd iff er en ce si n eff ec tiv en es sb et w ee n tr ai ne rs .i ti sa rg ue d th at ,t o be eff ec tiv e, th e sm t pr og ra m do es no tn ec es sa ri ly ha ve to be gi ve n by cl in ic al ps yc ho lo gi st s on ly bu tm ay in st ea d be gi ve n by in di vi du al sf ro m ot he rp ro fe ss io na l or ie nt at io ns + bl um en th al et al ., [ ] is ch em ic he ar td is ea se (i h d )p at ie nt s m ea n ag e: r el ax at io n an d im ag er y (s m )/ ex er ci se on ly /u su al ca re ke y co m po ne nt st o st re ss m an ag em en t (s m )t ra in in g: ed uc at io n in w hi ch pa rt ic ip an ts w er e pr ov id ed in fo rm at io n ab ou ti h d an d m yo ca rd ia li sc he m ia , st ru ct ur e an d fu nc tio n of th e he ar t, tr ad iti on al ri sk fa ct or s, an d em ot io na l st re ss .s ec on d, pa tie nt su nd er w en ts ki lls tr ai ni ng ,i nv ol vi ng in st ru ct io n in sp ec ifi c sk ill st o re du ce th e aff ec tiv e, be ha vi or al , co gn iti ve ,a nd ph ys io lo gi ca lc om po ne nt s of st re ss .th er ap eu tic te ch ni qu es in cl ud ed gr ad ed ta sk as si gn m en ts ,m on ito ri ng ir ra tio na la ut om at ic th ou gh ts ,a nd ge ne ra tin g al te rn at iv e in te rp re ta tio ns of si tu at io ns or un re al is tic th ou gh tp at te rn s. pa tie nt si ns tr uc te d in pr og re ss iv e m us cl e re la xa tio n an d im ag er y te ch ni qu es ,a lo ng w ith tr ai ni ng in as se rt iv en es s, pr ob le m so lv in g, an d tim e m an ag em en t. r ol e- pl ay in g al so w as us ed .th ir d, gr ou p in te ra ct io n an d so ci al su pp or tw er e en co ur ag ed sm ( % )/ ex er - ci se ( % )/ us ua l ca re ( . % )( a) . h × w ( h) st a ig en er al an xi et y: 𝑃 = . fo r ex er ci se an d sm ve rs us us ua lc ar e aft er tr ea tm en ta nd th e -i te m g h q to as se ss ps yc hi at ri c sy m pt om sa nd ge ne ra ld is tr es s 𝑃 = . fo re xe rc is e an d st re ss m an ag em en tv er su s us ua lc ar e (d ) fo rp at ie nt sw ith st ab le ih d ,e xe rc is e an d st re ss m an ag em en tt ra in in g re du ce d em ot io na l di st re ss an d im pr ov ed m ar ke rs of ca rd io va sc ul ar ri sk m or e th an us ua l m ed ic al ca re al on e ++ evidence-based complementary and alternative medicine (b ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l d es cr ip tio n of pr og ra m n um be r as si gn ed (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y br id ge et al ., [ ] f em al es w ith br ea st ca nc er st ag e io ri ia fte r fir st se ss io n of si x- w ee k co ur se of ra di ot he ra py m ea n ag es :r & i ,r ,c on tr ol r el ax at io n, br ea th in g, an d im ag er y/ re la xa tio n/ co nt ro lg ro up b ot h tr ea tm en tg ro up s( re la xa tio n an d re la xa tio n pl us im ag er y) w er e ta ug ht a re la xa tio n te ch ni qu e w hi ch by a pr oc es s of di re ct co nc en tr at io n fo cu se ss en so ry aw ar en es so n a se ri es of in di vi du al m us cl e gr ou ps .th es e pa tie nt sw er e al so gi ve n in st ru ct io ns fo rd ia ph ra gm at ic br ea th in g, w hi ch sl ow sr es pi ra tio n, in du ce sa ca lm er st at e, an d re du ce s te ns io n. in ad di tio n to th e br ea th in g an d re la xa tio n, ea ch pa tie nt in th e re la xa tio n pl us im ag er y gr ou p w as ta ug ht to im ag in e a pe ac ef ul sc en e of he ro w n ch oi ce as a m ea ns of en ha nc in g th e re la xa tio n. u nc le ar ; % to ta l dr op ou tb . h × w ( h + ho m ew or k) th e ite m “r el ax ed ” is pa rt of th e su bs ca le fo rt en si on in th e po m s: 𝑃 = . . th e le ed sg en er al sc al es fo ra nx ie ty an d de pr es si on sh ow ed no si gn ifi ca nt ch an ge s ov er th e si x w ee ks of tr ea tm en t( d) a tt he en d of th e st ud y pe ri od th e w om en tr ai ne d in re la xa tio n pl us im ag er y w er e m or e re la xe d th an th os e tr ai ne d in re la xa tio n on ly ,w ho in tu rn w er e m or e re la xe d th an th e co nt ro ls . pa tie nt sw ith ea rl y br ea st ca nc er be ne fit fr om re la xa tio n tr ai ni ng + fu ku ie ta l., [ ] fe m al e br ea st ca nc er pa tie nt s m ea n ag e: t . ,c . r el ax at io n an d im ag er y/ w lc th e m od el co ns is te d of th es e co m po ne nt s: ( )h ea lth ed uc at io n; ( ) c op in g sk ill st ra in in g; ( )s tr es s m an ag em en t; an d ( )p sy ch os oc ia l su pp or t. in th e he al th ed uc at io n co m po ne nt ,m ed ic al an d ps yc ho lo gi c in fo rm at io n sp ec ifi c to br ea st ca rc in om a w as pr es en te d. in th e co pi ng sk ill s co m po ne nt ,t he pa tie nt sw er e ta ug ht to ut ili ze th e ac tiv e- co gn iti ve an d ac tiv e- be ha vi or al co pi ng m et ho ds w he n th ey en co un te re d sp ec ifi c pr ob le m s re la te d to ha vi ng ca nc er .i n th e st re ss m an ag em en tc om po ne nt ,t he y w er e ta ug ht re la xa tio n ex er ci se s, in cl ud in g pr og re ss iv e m us cl e re la xa tio n (p m r ) fo llo w ed by gu id ed im ag er y (g i) . ps yc ho lo gi c su pp or tw as off er ed by th e st aff th ro ug ho ut th e in te rv en tio n, an d w ith in -g ro up su pp or tw as pr ov id ed by th e pa tie nt st he m se lv es t ( % )/ c ( % )( b) . h × w ( h +h om ew or k) po m s (t en si on /a nx ie ty ): 𝑃 = . (b et w ee n gr ou ps ), 𝑃 = . (g ro up × tim e ba se lin e, w ee ks , m os fo llo w up ) h a d s (a nx ie ty ) 𝑃 = . be tw ee n gr ou ps ,𝑃 = . (g ro up × tim e ba se lin e, w ee ks , m os fo llo w up )( d) a ss es sm en to ft he eff ec to n ps yc ho lo gi ca ld is tr es s in di ca te d a si gn ifi ca nt de cr ea se in to ta l m oo d di st ur ba nc e on th e po m s ov er th e st ud y pe ri od + evidence-based complementary and alternative medicine (b ) c on tin ue d. c ita tio n po pu la tio n in te rv en tio n/ co nt ro l d es cr ip tio n of pr og ra m n um be r as si gn ed (d ro po ut % ) to ta ld os e st re ss ou tc om es (b et w ee n gr ou p di ffe re nc es ) c on cl us io ns q ua lit y d eff en ba ch er et al ., [ ] m al e/ fe m al e st ud en ts w ho sc or ed in th e up pe r % ile on th e de bi lit at in g sc al e of th e ac hi ev em en t an xi et y sc al e m ea n ag e: n d r el ax at io n an d br ea th in g in te rv en - tio ns /w lc /n o tr ea tm en t ex pe ct an cy co nt ro l r el ax at io n as se lf- co nt ro li nv ol vi ng di sc ri m in at io n tr ai ni ng ,r el ax at io n tr ai ni ng ,a pp lic at io n tr ai ni ng ,a nd gu id ed pr ac tic e in re la xa tio n pr oc ed ur es . m od ifi ed de se ns iti za tio n in vo lv ed le ar ni ng re la xa tio n as a co pi ng sk ill , re la xa tio n as se lf- co nt ro l, an d ho m ew or k fr om re la xa tio n sk ill sl ea rn ed ,a sc en e pr es en ta tio n m ea nt to re la x th e pa tie nt r el ax at io n ( % )/ m od . de se ns iti za - tio n ( % )/ co n- tr ol ( % )/ w lc ( % )( b) m × ( . h) + ho m ew or k a a t d (d eb ili ta tin g an xi et y) an d a a t f (f ac ili ta tin g an xi et y) : po st te st an d fo llo w up be tw ee n gr ou ps an d tw o co nt ro lg ro up s 𝑃 < . ;t a i: be tw ee n gr ou ps at po st te st 𝑃 < . an d at fo llo w up 𝑃 < . (d ) g ro up sg iv en re la xa tio n as se lf- co nt ro la nd m od ifi ed de se ns iti za tio n bo th re po rt ed si gn ifi ca nt ly le ss de bi lit at in g te st an xi et y an d si gn ifi ca nt ly m or e fa ci lit at in g te st an xi et y th an co nt ro ls . r el ax at io n as se lf- co nt ro lg ro up sh ow ed re du ct io n an d m ai nt en an ce on bo th m ea su re so f no nt ar ge te d an xi et y re la tiv e to th e co nt ro ls + ta bl es ( a) an d ( b) ha ve be en sp lit ac co rd in g to th os e pr og ra m st ha tc on si st of “n am ed ” pr og ra m sa nd th os e th at co ns is to f“ un -n am ed pr og ra m s.” b ec au se th e un -n am ed pr og ra m sc on si st of so m et im es m ul tip le ac tiv iti es an d ar e he te ro ge ne ou sa cr os s, th e au th or sh av e in cl ud ed th e pr og ra m de sc ri pt io n to co m pl em en tt ho se ca te go ri es of st ud ie s. a a t d :a ch ie ve m en ta nx ie ty te st (d eb ili ta tin g an xi et y) ;a a t f: ac hi ev em en ta nx ie ty te st (f ac ili ta tin g an xi et y) ;b a i: b ec k an xi et y in ve nt or y; b- po m s: bi po la rp ro fil e of m oo d st at es ;b si :b ri ef sy m pt om in ve nt or y; c a ps :c lin ic ia n ad m in is te re d pt sd sc al e; b q :s hi ro m -m el am ed bu rn ou tq ue st io nn ai re ;c sq :c op in g st ra te gy qu es tio nn ai re ;d is :d ea lin g w ith ill ne ss sc al e; d si :d iff er en tia ls tr es s in ve nt or y; el ss :e ve ry da y lif e st re ss sc al e; g h q :g en er al he al th qu es tio nn ai re ;h a d s: ho sp ita la nx ie ty an d d ep re ss io n sc al e; is sl :i nv en to ry of st re ss sy m pt om s lip p fo r ad ul ts ;m c o s: m ea su re m en t of cu rr en t st at us ;m es a :m ea su re fo r a ss es sm en t of g en er al st re ss su sc ep tib ili ty ;p o m s: pr ofi le of m oo d st at es ;p ss :p er ce iv ed st re ss sc al e; pt c i: po st -t ra um at ic c og ni tio n in ve nt or y; sc l- :s ym pt om c he ck lis t ; sc l - r (g si ); sy m pt om ch ec kl is t gl ob al se ve ri ty in de x; st a i: st at e- tr ai ta nx ie ty in ve nt or y; ta i: tr ai ta nx ie ty in ve nt or y; w sq p: w or k- re la te d qu es tio nn ai re fo rc hr on ic ps yc hi at ri c pa tie nt s. (a )p ow er ca lc ul at io n do ne an d ac hi ev ed ,( b) :p ow er ca lc ul at io n no td on e or re po rt ed ,( c) un cl ea ri fp ow er ca lc ul at io n do ne or ac hi ev ed ,a nd (d )e ffe ct si ze no tr ep or te d, n d :n ot de sc ri be d, w lc :w ai tl is tc on tr ol , t: tr ea tm en t, c :c on tr ol . evidence-based complementary and alternative medicine in significantly less burnout in individuals with stress- related conditions [ ]. in the fourth study, pediatric headache patients who completed a -hour cbt program incorporating progressive muscle relaxation had significant improvements in coping with stress [ ]. three studies characterized their intervention as an smtp plus relaxation techniques. in one study of us army employees stationed at the pentagon, an smtp that combined multiple relaxation techniques resulted in significant reductions in distress but not anxiety [ ]. a second study which implemented a - hour smtp with pmr in parents of children with severe physical disabilities resulted in significant reductions in both state and trait anxiety [ ]. a third study using a -hour smtp program with pmr resulted in decreases in distress and trait anxiety in police, hospital, and school employees [ ]. four-high quality studies implemented gi or breathing exercises with other relaxation techniques, and in each case the results were mixed: some stress-related outcome mea- sures showed statistically significant differences, while others did not. in a study of ischemic heart disease patients, a -hour program combining gi with coping skills training and pmr resulted in significant reductions in distress but not in anxiety [ ]. a second study implemented a nine- hour program of gi with coping skills training and pmr in breast cancer patients and found a decrease in anxiety as measured by the profile of mood states (poms) but not by the hamilton anxiety and depression scale (hads) [ ]. the third study used three hours of gi with breathing and relaxation exercises in breast cancer patients undergoing radiotherapy; while tension scores on the poms lessened significantly, the leeds anxiety differences were nonsignifi- cant [ ]. the fourth study that used relaxation, breathing, and desensitization techniques in highly anxious psychology students produced statistically significant reductions in test- taking anxiety [ ]. . . resource requirements of named multimodal programs. in this section, the authors provide a subjective assessment of the resource requirements for these programs, based on the descriptive data collected: information describing the amount of time required for individual and practitioner or trainer involvement, facility and equipment needed, and estimated cost ranges. because the unnamed programs were heterogeneous with regard to time for training and content involved in each session, the authors elected not to report on resource requirements for these. in determining what resources would potentially be required during the training phase for the named programs (see figure (a)), the authors considered this as the period of time when a program was initially instituted and would require a trainer or instructor to teach self-management skills to participants. since data was collected on the “dose” of the program training (i.e., the actual number of hours per week×number of weeks in which the program was delivered), the authors then categorized the amount of training time needed as minimal (less than hours on average) or extensive (greater than hours). based on this information, the authors then estimated the amount of practitioner or trainer involvement required to teach these skills. programs like mbsr and cbsm require substan- tially more specialized training of and sustained practitioner involvement, compared to interventions like at and rrt which can be more quickly learned by participants. using the descriptions of the intervention extracted from the data, the authors then codified facility requirements (i.e., an estimate of how much space is needed to learn the techniques), whether any equipment is necessary to learn the skills, and costs associated with the training (based on internet searches of the described programs). the authors present a similar assessment for the self-practice requirements (i.e., once the individual is fully trained and able to practice on his/her own) in figure (b). compared to conventional therapies, the resource requirements for both training and self-practice are all overall likely minimal. once fully trained, service mem- bers should be able to practice these skills easily in any setting, with minimal time required, no equipment necessary, and at virtually no additional cost. while the main focus of this review was to report on the effectiveness of these multimodal programs in impacting emotional stress, the authors have additionally provided information about estimated resource requirements for military leadership and program managers in order to guide their decision making about the feasibility of integrating such programs into military settings. whether these programs could be implemented “as is” or if they would need to be modified or adapted is not an assessment the authors have made, as only those in decision-making positions are able to definitively decide such feasibility issues. . discussion the programs described in this report have potential ben- efits for service members and their families. since they primarily involve self-management skills, they can become self-empowering to the individual and can be used in any environment, with minimal time needed. this may be especially helpful to the population of individuals that are likely to refuse, delay, or feel stigmatized by conventional therapies. they are cost-effective strategies to prevent or manage stressors. since they are multimodal, they may offer greater appeal than single-modality programs. there are very few to no adverse effects from these self-management skills when properly learned and practiced. although there are reviews in the literature to describe relevant programs that address specific issues (ptsd, resilience) in service member populations [ , ], this com- prehensive systematic review globally reviewed the literature on biopsychosocial multimodal programs, extracted the ones with high methodological quality and statistically significant reductions in stress (and similar keywords), and presented these results with estimated resource requirements. because of this comprehensive approach, promising programs that have a strong evidence base, most of which were not evaluated in military populations, were able to be identified. this information is important for learning approaches that could be applied in these populations, especially since there is so evidence-based complementary and alternative medicine extensive chart area minimal none ti m e pr ac tit io ne r in vo lv em en t fa ci lit y re qu ir em en ts eq ui pm en t c os t mbsr cbsm at rrt (a) extensive minimal none ti m e pr ac tit io ne r in vo lv em en t fa ci lit y re qu ir em en ts eq ui pm en t c os t mbsr cbsm at rrt (b) figure : (a) training requirements and (b) self-practice requirements. little research on these topics in military populations. this data could potentially aid military leaders who are looking for evidence-based programs to reduce psychological stress and help guide their decision making about implementing these programs as described, or tailoring the needs of service members. a fundamental problem associated with initial efforts to launch effective mind-body programs in practice is the lim- ited evidence base to guide program choice. while evidence- based approaches may be desirable, such evidence is scarce. even if evidence is available, the basic steps of program plan- ning may lead conscientious planners to programs that have not been evaluated for their effectiveness. with this paper, the authors hope to stimulate thinking about translating this best evidence synthesis into practice, in order to make headway into the prevention and treatment of stress-related illness. the message to service members and their family members who are struggling with stress-related conditions is that they can change the way their body and mind react to stress by changing their thoughts, emotions, and behaviors. to the leadership, that is, understandably wary of making decisions without the proper evidentiary support, the authors offer the results of this comprehensive systematic review, demonstrating some promising directions, preliminary evi- dence of effectiveness for stress-related outcomes across all populations, and basic characterizations and descriptions of some of the self-care, skills training programs. the goals were to demystify them and to illustrate that many of them involve minimal cost and training time. the us military success at shifting the combat focus from response to ied attacks in theater to better ied detection and armor to prevent injuries, termed “left of boom” [ ] can serve as a powerful model for the mitigation of combat stress-related issues. a similar commitment to changing the paradigm from treatment of combat-related ptsd after it has been diagnosed to empowerment of troops and their families to take control over their physiologic and psychological responses to stress through skills training would represent a true shift to “left of ptsd” [ , ]. . . limitations of the review. the authors of this compre- hensive systematic review were only interested in assessing and reporting on the stress-related outcomes reported in the articles; whether they were primary or secondary outcomes was irrelevant to the review. because of this, the authors did not paint the whole picture of each study captured and may have missed important elements of the original authors’ intent. it was chosen to capture only those studies that reported on stress using the following terms: stress, anxiety, posttraumatic stress disorder, coping, resilience, har- diness, burnout, distress, or relaxation. the authors derived these terms by assessing the literature and consulting with subject matter experts. the authors acknowledge that this is most likely not a comprehensive and exhaustive list of all emotional stress-related terms, and the search may have missed pertinent studies that would have fit the inclusion criteria using other similarly related terms for stress. another limitation is that this review only included multimodal programs. the authors felt that these programs would include the dimensions of the bps model and would have broader appeal by not focusing all efforts on one technique (e.g., yoga). as a result, any studies involving a single modality (i.e., only yoga, meditation, relaxation, or imagery) were excluded at the screening phase. the authors and colleagues are currently assessing the literature of single- modal mind-body approaches in a more focused population relating to the military. the authors only included those studies that have been published in the english language. while some systematic reviews consider the inclusion of only english-language stud- ies as a limitation; doing so does not seriously compromise the outcome or implication for the majority of interventions and claims [ ]. there has been some debate over this in the literature. the amount of effort and expense to include studies evidence-based complementary and alternative medicine that have not been translated into the english language is a challenge to methodologists since the translator needs to be proficient in scientific language, able to understand the systematic review methodology, and be involved from the protocol development phase to clearly understand how to accurately code each review. the majority of systematic reviews, because of this challenge, only include the literature that is available in the english language. the authors excluded all biofeedback studies during the review phase because it was decided that these were not truly self-management techniques; one would have to rely on the device during practice. other programs, such as those learned through the internet or books, were excluded on this basis as well. in this report, the authors have only described those studies that were of high quality and which reported statis- tically significant results between groups in controlled trial designs because of the interest in sharing only those that the authors felt confident in the estimate of the effect compared to a control group. thus, excluded from this report were those programs that showed only within-group differences. finally, quality assessment was based solely on internal validity criteria (the likelihood that the observed effects are due to bias) and did not take into account external validity (the likelihood that observed effects would occur outside the setting, i.e., generalizability), which is not usually assessed when evaluating quality in systematic review. had the authors assessed external validity, the number of low-quality studies may have been decreased, allowing more studies to be shared. future studies in the field should evaluate not only bias but also generalizability when assessing quality criteria. . conclusion the objective of this paper was to provide a descriptive overview and quantitative synthesis of information on multi- modal programs that might be used for the self-management of emotional stress in our military communities and to consider this body of research as a guide to next steps in the research on implementation in military populations. mbsr, cbsm, at, rrt, yoga plus similar meditation-based skills, and relaxation practices are the types of approaches emerging in the literature as the most promising for their benefits and ease of implementation in different settings. imple- menting these identified training programs into military settings appears highly feasible, considering that resource requirements are minimal. conflict of interests none of the authors have any conflict of interests to report based on this project, including financial interests, consultant, institutional or other relationships that might lead to bias or a conflict of interests. acknowledgments the authors would like to acknowledge sasha knowlton, md, matthew fritts, mph, pmp, e- ryt, and viviane enslein for their contributions to the project. oral presentation was done by c. crawford, d. wallerstedt, and r. khorsan. biopsychosocial training programs for the self-management of emotional stress: potential applications for the mili- tary armed forces health protection conference afhpc, hampton, va, march , . this project was funded by the us army medical research acquisition activity, chandler street, fort detrick, md award no. w xwh- - - through telemedicine and advanced technology research command (tatrc). the views, opinions, and/or findings contained in this report are those of the 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[ ] department of defense, the post-deployment health reassess- ment, “force health protection and readiness policy and programs. battlemind training,” http://fhp.osd.mil/pdhrainfo/ battlemind.jsp. [ ] ausa news, “clinic expands scope to meet new need,” , http://www .ausa.org/webpub/deptausanews.nsf/byid/ pgrh- ruhnq. [ ] d. moher, p. pham, t. p. klassen et al., “what contributions do languages other than english make on the results of meta- analyses?” journal of clinical epidemiology, vol. , no. , pp. – , . http://fhp.osd.mil/pdhrainfo/battlemind.jsp http://fhp.osd.mil/pdhrainfo/battlemind.jsp http://www .ausa.org/webpub/deptausanews.nsf/byid/pgrh- ruhnq http://www .ausa.org/webpub/deptausanews.nsf/byid/pgrh- ruhnq the impact of an immersive elective on learners’ understanding of lifestyle medicine and its role in patients’ lives teachers’ topics the impact of an immersive elective on learners’ understanding of lifestyle medicine and its role in patients’ lives melissa j. mattison, pharmd, rph, bs and eric c. nemec, pharmd, bcps college of pharmacy, western new england university, springfield, massachusetts submitted january , ; accepted april , ; published october , . objective. to design an immersive, active learning, lifestyle medicine (lm) elective and evaluate its impact on a pharmacy learners’ ability to understand the challenges of implementing lifestyle changes. design. a -credit elective was developed that incorporated goal setting and immersion into the realm of lm as experienced by both the patient and the practitioner. learners were assessed via a survey instrument, formal assignments, reflections, and the presidential fitness challenge. assessment. learners reported that their ability to initiate lm as a primary intervention within a care plan significantly increased after taking this course. they also improved their overall health. conclusion. by identifying and implementing self-identified lifestyle modifications, learners increased confidence in their abilities to produce evidence-based outcomes for patients. learners were able to understand the challenges of trying to change their daily habits as they undertook their own personal goals. keywords: active learning, lifestyle modifications, elective, lifestyle medicine introduction pharmacist involvement in the health and wellness of patients continues to fall short of its full potential in the united states. in , the cdc published results from an analysis that compared the leading causes of death to the actual causes of death in the united states. the lead- ing causes of death were heart disease, cancer, stroke, chronic respiratory disease, and unintentional injury; these can be attributed to poor lifestyle choices, tobacco use, poor diet, physical inactivity, and excessive alcohol con- sumption. they can be considered preventable if effective interventions are implemented in a timely fashion. - the majority of actual causes of death such as poor diet and physical inactivity are modifiable lifestyle related behav- iors. , the enormous potential effects of health behavior change on mortality, morbidity, and health care costs pro- videample motivationforthe conceptoflifestyle medicine (lm), namely eliminating tobacco use, improving diet, increasing physical activity, and moderating alcohol in- take. , health behaviors can influence the future health andthewellbeingofpatients,especiallythosewithchronic conditions. eighteen percent of patients with heart disease continue to smoke, which is only slightly better than the general population’s smoking rate of . %. obesity is an accelerator of chronic diseases. more than one-third of adults and % of children in the united states are obese, with the prevalence remaining stable between - and - . pharmacists,asthe mostaccessiblehealth care provider,are ideallypositionedto educatepatientsand move the profession forward while providing evidence- based outcomes. as roles transition in the near future, pharmacists need to step out of their dispensary role and embrace working as care providers. health and wellness is a core competency of the cape educational outcomes. designing “prevention, in- tervention, and educational strategies for individuals and communities to manage chronic disease and improve health and wellness” are key components of the outcomes and also of our emerging role as care providers. approx- imately % of americans have at least one chronic med- ical condition and only . % of american adults between the ages and are considered to have a low risk factor burden for cardiovascular disease. , the interheart and interstroke studies predicted that % of myo- cardial infarctions and strokes are caused by modifi- able and lifestyle related risk factors. - lifestyle medicine is an emerging field of health care that may best be defined by the american college of lifestyle medicine (aclm) as the “use of lifestyle interventions in the treatment and man- agement of disease. such interventions include diet, exer- cise, stress management, smoking cessation, and a variety of other non-drug modalities.” corresponding author: melissa j. mattison, wilbraham road, western new england university, springfield, ma . tel: - - . fax: - - . e-mail: mmattison@wne.edu american journal of pharmaceutical education ; ( ) article . b y gu es t on a pr il , . © a m er ic an a ss oc ia ti on o f c ol le ge s of p ha rm ac y ht tp :/ /w w w .a jp e. or g d ow nl oa de d fr om http://www.ajpe.org educating our future care providers is an essential component of medical and pharmaceutical education. an interest in establishing lifestyle medicine as part of patient-centeredcare and thusmotivatingpatients to man- age their health has increased over the last decade. phy- sicians have cited their own inadequate confidence and a lack of knowledge and skill as major barriers to coun- seling patients about lifestyle interventions. however, when lm is incorporated into practices patient outcomes improve. few pharmacy schools offer courses that ad- dress multiple lifestyle modification-related topics as an integrated approach in curricula. because lifestyle be- haviors are the cause of so many preventable chronic diseases, the economic burden of which is great, health care practitioners can help patients maximize healthy be- haviors through education, motivational interviewing, and counseling. the accreditation council for phar- macy education’s first standard recommends advancing the standards of pharmacy education in the united states. applying pharmacist expertise to lifestyle interventions embodies this standard and could be a robust part of phar- macy education. pharmacists have the knowledge and accessibility to make recommendations and create care plans for patients to help reverse the decrease in adher- ence to healthy lifestyle behaviors. moreover, the same number of adults and children are obese today as they were in - . smoking rates have not changed ei- ther, and the amount of people eating five or more fruits and vegetables per day has decreased from % to %. , the objective of this paper is to describe the design of an immersive, active learning, lifestyle medi- cine elective and evaluate its impact on a pharmacy learners’ ability to understand the challenges of making lifestyle changes to improve one’s health. design a course titled health, wellness, and fitness was offered as a -credit elective to pharmacy learners in the fall semester of their third year. the course was open to all learners in the college of pharmacy and were enrolled on a first come, first serve basis. the class size was limited to learners to enable a small, interactive experience. there were females and males enrolled in the class, all of whom completed the class. while unnecessary for this offering, there was a plan to address accessibility issues for learners with limitations. the primary objective of this paper is to describe the design and implementation of a class that places learners inanimmersivelmexperience. the course objectives were to formulate an action plan for individual patients that reflect the health, well- ness, and fitness components central to being proactive in disease state management, to develop evidence-based, patient-centered care plans for common ailments, to rec- ognize and promote the availability of preventative health services and wellness programs, and to actively train in the “couch to k” program. the secondary objectives of this exploratory study were to assess learners’ knowledge and attitudes regarding lm. the instructors hypothesized that engaging learners in required lm interventions would enable learners to fully grasp the potential diffi- culty of making these interventions in patients. while lm course design has been described in pharmacy, medicine, and allied health literature, no paper has addressed the impact of an immersive lm experience comparable to the one in this study. the lack of lm education literature prohibits us from drawing comparisons between our immersive course and others reported. our hypothesis was that active learning activities provide learning out- comes that correspond to the “shows how” level of miller’s taxonomy, and the immersive format would el- evate the class outcomes to the “does” level. after the initial introduction to lm, learners were expected to set personal lm goals and work on their goals throughout the semester with support from their classmates and instruc- tor. learners were given instructions to set specific, mea- surable, attainable, realistic, and timely (smart) goals and focus on successfully completing a wellness or health-driven goal based on their own area(s) in need of improvement. the instructor provided an example of a goal to the class and offered insight as to why that particular goal might be chosen. examples of learners’ goals included eating more healthfully (eg, incorporating - servings of vegetables and fruits per day), losing weight, achieving a better level of fitness (eg, working out at least times per week), completing a k, abstaining from drinking soda, and decreasing the consumption of sweets and/or unhealthy snacks. learners reflected on their goals in required written submissions through- out the semester. by experiencing these interventions throughout the semester, the authors anticipated that learners would become better prepared to help patients overcome the challenges associated with implementa- tion of lifestyle medicine. table lists a breakdown of concepts covered in the course. these concepts were chosen after a careful review of the lm textbook used in the class and topics that interested learners and would have a significant im- pact on disease states (eg, exercising to reduce weight, stress, and risk of diabetes and cardiovascular disease). the dimensions of wellness were also taught to show that many factors can impact a person’s wellness. other topics selected included those not addressed else- where in the curriculum or current events, such as fad diets. american journal of pharmaceutical education ; ( ) article . b y gu es t on a pr il , . © a m er ic an a ss oc ia ti on o f c ol le ge s of p ha rm ac y ht tp :/ /w w w .a jp e. or g d ow nl oa de d fr om http://www.ajpe.org the class met twice per week for weeks. the first class session met for hours in which the learners were presented with a short didactic lecture, engaged in a dis- cussion of key points facilitated by the instructor, then participated in an active learning exercise related to the topic. assessments, screenings, nutrition logs, subjective, objective, assessment, and plan (soap) notes, patient cases, motivational interviewing role play, group presen- tations, flipped classroom, health and wellness related mobile apps, and the design of patient care plans provided the foundation for the active learning activities. in lieu of a traditional -minute break during the - hour class session, learners were given the option of vol- unteering to lead a - minute “wellness break” to introduce an lm concept to the class. learners were afforded this opportunity to research and share lm initia- tives that they had a personal interest in (see table ). the sessions encompassed a wide variety of topics, from med- itation to color therapy. when learners did not have a ses- sion planned, the instructor also offered wellness breaks ranging from organic food comparisons to an outdoor mini-yoga session. in the first class, learners completed the composite lifestyle index (cli), a tool which measures and helps to identify areas of concern or need such as healthy eating, physical activity, sleep, tobacco use, alcohol consump- tion, and stress. this tool was designed to identify raw data points of a healthy lifestyle data points to corre- late with overall quality of life. composite lifestyle index is used in lm as a surrogate marker for overall health; however it has only been validated in a small study. , the cli helped to focus many learners as to their possible areas of improvement. after the basic tenets of lm were introduced and the cli taken, learners for- mulated personal smart goals for the semester with the caveat that they should be able to accomplish their well- ness goal over the course of one semester. many learners chose weight loss as a smart goal and tried to achieve it over the semester. the subsequent -hour class session was dedicated as the active fitness portion of the class. the president’s adult fitness challenge was administered the first week and participants underwent a timed . mile run or a mile walk, as well as a sit-up, a push-up, and a stretch test. the challenge is the adult version of what children still undertake in primary school, known as the presi- dent’s fitness challenge. data collected from the chal- lenge tests,as well as height,weight,waist circumference, and body mass index (bmi), can be calculated on the challenge website and compared to similar subjects based on age. completing the adult fitness challenge provided an overall baseline for the class to measure their own fitness. learners were of various fitness levels at the be- ginning of the semester and they completed the challenge again at the end of the semester to compare results (see table ). the couch to k program is a well-known, -week program that is available online at no charge. it is struc- tured as a combination walking andrunning plandesigned to motivate the unathletic person who is classified as a “couch potato” to increase their level of fitness and train for and complete a k. guided by this plan, learners were table . lifestyle medicine course schedule and breakdown of concepts covered week topic proposed wellness breaks introduction to lifestyle medicine: evidence-based lifestyle changes/ self-analysis/ president’s adult fitness challenge healthy alternative snacking holiday diet presentations/ nutrition, obesity/ nutrition logs/ care plan relaxation video experience stress and the management of stress and mental health/ stress quiz and discussion/care plan progressive muscle relaxation dimensions of wellness yoga alcohol consumption taste test: organic egg comparison tobacco cessation product showcase break motivational interviewing color therapy substance abuse/ science of addiction/ otc abuse meditation exercise healthy sleep/ sleep log/ care plan the -minute financial wellness plan november k race saturday am kinesiology/ exercise and wellness stretch! pediatrics to geriatrics: a life long commitment to wellness (decades presentations) pet therapy wellness analysis and reflection discussion mindfulness meditation a new take on wellness: surviving h n (guest speaker) juicing american journal of pharmaceutical education ; ( ) article . b y gu es t on a pr il , . © a m er ic an a ss oc ia ti on o f c ol le ge s of p ha rm ac y ht tp :/ /w w w .a jp e. or g d ow nl oa de d fr om http://www.ajpe.org required to train on days of the week alone or with friends/classmates. many formed small groups and trained together. learners downloaded the mobile appli- cation, “couch to k,” and sent results to the instructor on the training days that took place outside of class. the class agreed upon on a race that would coincide with the end of the -week program and would also benefit a worthwhile cause: a local ymca k that provides scholarships to underprivileged children. group exercise encouraged and motivated the learners to be physically active both in and out of class. learners enthusiastically brought classmates to the fitness portion of class and several fac- ulty and deans also voluntarily participated every week. a chinese proverb, “tell me, i forget. show me, i remember. involve me, i understand,” provided the es- sential philosophy for the course design. in addition, the concept of “see one, do one, teach one” was reiterated throughout the semester as learners progressed from learning about lm (“see one”) to making changes in their own lives (“do one”) to reflecting upon the challenges therein. the “teach one” component was introduced as learners began to offer their own wellness ideas during our - minute wellness breaks in the -hour class ses- sions. the “teach one” aspect also was reinforced through soap notes and longitudinally through reflection ques- tions regarding the implementation of a particular lm concept in practice. additionally, learners were provided with tools to lead patients (“teach one”) in health and wellness, including guides to implement couch to k programs, nutrition plans for patients, sleep hygiene ad- vice, stress reduction ideas, and smoking cessation plans. this study was approved by the western new england university institutional review board. evaluation and assessment seventeen learners were assessed at baseline and at the end of the semester regarding their perceptions of lm, comfort level with providing lm interventions, and empathy for patients when implementing lm interven- tions. the anonymous survey data were assessed using in- dependent t tests to measure significant changes over time. as this is an elective course, we anticipated many of the learners enrolled would come with preconceived notions and knowledge regarding lm. however, of what we considered the most important secondary objec- tives, the ability to recommend specific lm interventions and the ability to create a care plan with lm as the primary intervention, did yield significant improvements in the post survey (see table ). the third significant result was that learners’ self-rating regarding their familiarity with lm concepts improved. however, we did not see many other significant changes throughout the semester based on the survey information. despite the active com- ponent of the course, we did not see a significant change in the self-rating of physical activity, although learners did engage in the class activities. we found this lack of change to be interesting in contrast to the significant im- provement in the pre- and postcourse presidential fitness challenge scores (see table ). three examinations were given throughout the se- mester to assess comprehension of the concepts and care plan design for patients with regard to lifestyle modifica- tions. when presented with a case, learners were able to accurately identify patient needs and create a soap note or care plan. the results of the examination, which all learners passed, revealed the didactic portion of the course was providing foundational knowledge to the learners. learners were required to submit written re- flections that assessed their ability to identify challenges and implement changes to overcome them. common themes of the reflections centered on the challenges that evolved from the implementation process. many learners reflectedthattheconceptswerenotdifficulttocomprehend but that the actual long-term practice was very demanding and required much attention and dedication. for example, of the learners stated they would like to lose - pounds but realized just how difficult that was, especially under the stressful workload of the pharmacy curriculum. the engagement of the class in the physical exercise component of lm was assessed through the completionof the k race as well as attendance at all of the group exer- cise classes. learners were instructed to complete the workouts on other days outside of class and send the results to the instructor via the couch to k mobile app or a comparable app. although not quantified, the influence of social networks on motivation and accountability table . comparison of results of pre- and postcourse presidential fitness challenge (n ) preclass mean (sd) postclass mean (sd) p value half sit-ups . ( . ) . ( . ) , . push-ups . ( . ) . ( . ) , . sit and reach (inches) . ( . ) . ( . ) , . body weight . ( . ) . ( . ) . mile run (min:sec) : ( : ) : ( : ) . american journal of pharmaceutical education ; ( ) article . b y gu es t on a pr il , . © a m er ic an a ss oc ia ti on o f c ol le ge s of p ha rm ac y ht tp :/ /w w w .a jp e. or g d ow nl oa de d fr om http://www.ajpe.org began to emerge as learners voluntarily partnered up to train together outside of class. end-of-semester evaluations were all above average within the college of pharmacy. comments from learners included“excellent course,” “oneof the most helpfuland practical so far,” “the learning environment was spectac- ular,” “helped us improve our own lives in addition to teaching us how to help others,” “the first of its kind,” “i saw my grades in other courses improve as a result of the improvement in my personal health and wellness,” and “great way for me to learn how to relate to my pa- tients in the community.” discussion the course was successful in meeting its primary objective of providing learners an immersive experience in lm and educating them about incorporating appropri- ate lm plans as patient care interventions. the ability to recommend specific lm interventions and the creation of a care plan with lm as the primary intervention also improved significantly. personal goal setting was a key component of the elective because successful lm interventions rely on smart goals. the class experienced a high success rate of personal smart goals throughout the semester. selecting small incremental goals allowed for successful implementation of lifestyle modifications. the smart goal format was used to aid the learners in evaluating the success of achieving their goals. by experiencing this firsthand, learners might be better able to improve their ability to counsel patients on appropriate goal setting and realistic expectations for lm interventions. at the begin- ning of the course, the learners set a total of lm goals for themselves following the smart goal format that included improved nutrition, fitness, and weight loss. learners were able to fully meet . % (n ) of those goals and partially meet . % (n ) of the goals. those goals not met were based on personal weight loss goals, which, despite the improved physical fitness of learners (see table ), did not translate into weight loss for the class overall.thepresidentialfitnesschallengeservedasabase- line and a final measurement of fitness level for the class as it was designed to quantify strength, flexibility, and aerobic capacity. we found it interesting that while learners did not self-rate a significant improvement in their activity level, the fitness challenge scores all significantly improved. an immersive lm elective class could be of interest to any college or school of pharmacy that would like to augment their current offerings and expand the concepts of lifestyle modifications. the design of the course allowed for a great deal of “hands-on” learning, which benefited those who perform well in active-learning ac- tivities. self-directed learning was a part of the course and learners reported enjoying the challenge and gaining per- spective on how difficult it can be to make changes even with the knowledge of understanding the impact of lm on disease states. this could be invaluable as generally young and healthy learners begin to take care of aging table . preclass and postclass survey results regarding lifestyle medicine (lm) course objectives question pre-class mean (sd) n= post-class mean (sd) n= p value how familiar are you with lm?a . ( . ) . ( . ) , . how difficult do you think it is to implement lm practices in your patients? b . ( . ) . ( . ) . how comfortable are you with recommending specific lm?c . ( . ) . ( . ) . how comfortable are you with creating a care plan with lm as the primary intervention?c . ( . ) . ( . ) . how difficult for me is it to empathize with patients who could benefit from lm (eg, counseling a morbidly obese patient on diet and physical activity)?b . ( . ) . ( . ) . lm practices for disease prevention are just as important as the treatment of chronic diseases d . ( . ) . ( . ) . experiencing lifestyle medicine practices as a pharmacy learner is essential to empathizing with a patient.d . ( . ) . ( . ) . how would you rate your physical activity?e . ( . ) . ( . ) . a -not familiar, -somewhat familiar, -neutral, -familiar, -very familiar. b -very difficult, -somewhat difficult, -neutral, -easy, -very easy. c -not at all comfortable, -somewhat comfortable, -neither comfortable nor uncomfortable, -comfortable, -very comfortable. d -completely disagree, -disagree, -neither disagree nor agree, -agree, -completely agree. e -not at all active, -somewhat active, -active, -very active. american journal of pharmaceutical education ; ( ) article . b y gu es t on a pr il , . © a m er ic an a ss oc ia ti on o f c ol le ge s of p ha rm ac y ht tp :/ /w w w .a jp e. or g d ow nl oa de d fr om http://www.ajpe.org and ill patients. moreover, the class structure and design could be integrated into other courses such as disease state management classes. limitations of assessing the secondary objectives in- cluded a small sample size and limited participation in the survey. the small sample size may have underpowered the statistical analysis. interest among students was there as more than half of the third year pharmacy students selected this elective as their first choice. but the instruc- tor wanted a small class for the first implementation. the next offering of the elective would include a larger class size, among other revisions. additionally, because the class was already familiar with the concepts of lm, they knew that part of the course was designed to show how difficult lm changes are to implement. this may have influenced their responses to the survey. last, we ques- tioned the understanding of empathy vs sympathy in the survey responses, unless class members had already un- dertaken previous lm initiatives in their private lives, however these data were not collected. a review of the practice guidelines for several chronic diseases shows that nearly all guidelines recom- mend lifestyle medicine related behaviors to both prevent and treat disease. preventing and treating chronic dis- eases will save the united states billions of dollars per year. in , the cdc estimated cardiovascular disease and stroke costs alone to be $ . billion. , the old saying, “an ounce of prevention is worth a pound of cure” therefore takes on literal meaning in this context. rather than trying to provide expensive fixes for patients, health care practitioners should be primary focusing on disease prevention. as the most accessible health care provider, pharmacists have the unique opportunity to lead the imple- mentation of lm and positively impact patients’ lives. summary teaching learners to undertake their own lifestyle modifications proved to be a powerful tool. learners were required to set - goals to work on during the elective class and were able to remain focused and be creative in trying to stay on target. it was challenging for many learners, but as they explored the lm concepts in greater depth throughout the semester, they were able to understand the importance of lm and setting small goals to be successful. they were also 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https://www.presidentschallenge.org/challenge/adult.shtml. accessed april , . . the couch-to- k � running plan j c k mobile app. coolrunning.com. http://www.coolrunning.com/engine/ / _ / . shtml accessed april , . . dacey m, arnstein f, kennedy ma, wolfe j, phillips em. the impact of lifestyle medicine continuing education on provider knowledge, attitudes, and counseling behaviors. med teach. ; ( ):e - . american journal of pharmaceutical education ; ( ) article . b y gu es t on a pr il , . © a m er ic an a ss oc ia ti on o f c ol le ge s of p ha rm ac y ht tp :/ /w w w .a jp e. or g d ow nl oa de d fr om http://www.ajpe.org oops 	 		 			error | page not found 		 	 		work courses vita contact 	 	 	 		something went wrong. perhaps there is a typo on the url that got you here. or perhaps what you are looking for is no longer here. 		 		you might want to try going back home. 		 	 	 international journal of environmental research and public health review the state of animal-assisted interventions: addressing the contemporary issues that will shape the future aubrey h. fine ,*, alan m. beck and zenithson ng california state polytechnic university, pomona- department of education w temple ave, pomona, ca , usa center for human-animal bond, college veterinary medicine, purdue university, west lafayette, in , usa; abeck@purdue.edu university of tennessee college of veterinary medicine, river drive, knoxville, tn , usa; zng@utk.edu * correspondence: ahfine@cpp.edu; tel.: + - - - received: september ; accepted: october ; published: october ���������� ������� abstract: as the worldwide popularity of animal-assisted interventions (aais) increases, the field is quickly approaching a paradigm shift, adjusting its image to incorporate more evidence-based research and aligning its purpose for advancing a new future. contemporary critical issues that confront the field today include, but are not limited, to research, animal welfare, practice guidelines, and public policy. this article will provide an overview of the history of aai and the major milestones that the field has undergone. the current state of aai research will be scrutinized, and the areas that warrant further study will be recommended. special attention will be given to the current state of animal welfare in aai, the research that has been done in the area, and practice guidelines that safeguard animal wellbeing. this article will then discuss how evidence-based research and animal welfare guidelines inform the development of comprehensive professional standards and influence changes in public policy regarding aai. the authors’ perceptions for the field’s future trajectory will be presented, which will include solutions to move the field in the direction that best advances the human-animal bond in research, practice, and public perception. keywords: animal-assisted interventions; animal welfare; professionalization; public policy; human animal interactions . introduction the field of human-animal interactions (hai) and, more specifically, animal-assisted interventions (aai) has greatly evolved over the past half century. our association with animal companions and health has a long history. specifically, the field of aai is becoming a more recognized form of complementary therapy [ ]. both areas of investigation and practice have evolved from mainly misunderstood and sensationalized relationships between humans and animals, emerging as legitimate fields of study and service. what was once thought as somewhat novel and unusual is now generating more enthusiasm not only by the public, but also by growing numbers of interdisciplinary scientists and practitioners interested in studying and applying hai. many, including these authors, believe that the field of aai is quickly approaching a paradigm shift, adjusting its image to incorporate more evidence-based research and aligning its purpose for the new future. nevertheless, fine argued that perhaps the most significant misunderstanding of hai has been the misrepresentation and possible exaggeration of aai’s impact on the humans served [ ]. the overemphasis on outcomes that is more anecdotal than evidence-based may have slanted some int. j. environ. res. public health , , ; doi: . /ijerph www.mdpi.com/journal/ijerph http://www.mdpi.com/journal/ijerph http://www.mdpi.com https://orcid.org/ - - - http://dx.doi.org/ . /ijerph http://www.mdpi.com/journal/ijerph https://www.mdpi.com/ - / / / ?type=check_update&version= int. j. environ. res. public health , , of peoples’ perceptions. furthermore, some of the misunderstanding may be attributed to the media’s excessive and unscientific focus on the relationship between animals and humans, creating an impression that a simple pet prescription is all that’s needed for miracles to occur [ ]. fine argued that the leadership in the field must help educate stakeholders about the value of these interactions and provide a realistic presentation that does not exaggerate the impact of these interactions. as fine states, “animal-assisted interventions should not be considered as a panacea, but should be considered as a valuable life opportunity that can make a difference” [ ]. scientists and practitioners must be more tempered and realistic in their explanations of the efficacy of aai, especially since the scientific evidence is still not strong enough to support such high convictions. in this article, the authors will focus on the challenges that continue to plague the field, as well as provide some insights for solutions and directions for the future. some of the topics discussed will focus on the state of research in the field, the importance of animal welfare, the need for more refined professional standards (e.g., standardizing definitions, training, certification), and the importance of shifting and supporting public policy changes in order to impact the future of the field. . a glimpse at our history “a small pet animal is often an excellent companion for the sick, for long chronic cases especially. a pet bird in a cage is sometimes the only pleasure of an invalid confined for years to the same room. if he can feed and clean the animal himself, he ought always to be encouraged to do so” [ ]. even before florence nightingale ( ) used animals in a therapeutic setting, the quaker york retreat in england, the first recorded use of animals in a therapeutic setting in , utilized rabbits and poultry [ ]. in the early th century, groups were beginning to train dogs to assist blind people in navigating their world [ ]. fine notes that the field of aai has continued to evolve. the current landscape is quite different from its modern origin about years ago [ ]. it is hard to fathom that the early modern pioneers of aai, such as boris levinson and elizabeth and samuel corson, serendipitously discovered the therapeutic power of the human-animal connection. none of them anticipated what they witnessed. although their findings were not intentional, the outcomes of their revolutionary animal-assisted therapy work impacted our future understanding of hai. fine reports that levinson, a child psychologist practicing since the s, noticed a child, who was typically nonverbal and severely withdrawn during treatment, began talking to and interacting with levinson’s dog, jingles, in an unplanned interaction [ ]. this experience caused levinson to see the possible benefits of utilizing a dog during his psychotherapy visits [ ]. in , levinson coined the term “pet therapy.” despite the anecdotal experience and valued outcome, levinson initially resisted including his dog in therapy because he felt that incorporating jingles would be considered too unorthodox. his initial beliefs were accurate. according to levinson and mallon, in his early lectures about his impressions of pet therapy, levinson was ridiculed and belittled by his colleagues [ ]. in the s, samuel corson and elizabeth o’leary corson were some of the first researchers to empirically study canine-assisted interventions at ohio state university. their findings revolved around what they initially witnessed with patients from upham hall psychiatric hospital when dogs were integrated into their daily programming [ ]. the corsons happened to have a group of dogs in a kennel nearby primarily used to study stress on dogs. like levinson, they inadvertently discovered that some of their patients with psychiatric disorders were interested in the dogs, including one patient who was also selectively mute. the corsons discovered that interactions with the dogs made it easier for the patients to communicate with each other and the staff [ ]. the corsons coined the term “social lubricant” as one of the major outcomes occurring as a result of interactions between the client and a therapy animal. they observed the warmth generated in the hai and believed it acted as a critical ingredient in forging a working relationship. early experiences, such as those noted, opened the door to realizing that relationships with animals were not only beneficial for humans in their daily lives, but int. j. environ. res. public health , , of also could be valuable in therapeutic environments. this pioneer work encouraged the mental health community to consider the value of aai. in the early years, there was little diversity in how aai was implemented. in most cases, animals were included in therapy sessions to act primarily as social catalysts, and the outcomes reflected these expectations. today, aais are viewed more robustly and are applied with diverse populations in a wide array of settings and purposes [ , ]. furthermore, there is now a broad range of multidisciplinary professionals utilizing aais within their complementary human healthcare. truly, the field is now at a crossroads, where science is catching up with what mainstream society has believed for years: our interactions with animals can positively influence human health. . the need for research and evidence: connecting the dots from past to present initially, the field of hai was supported primarily with rich anecdotal evidence. although valuable as qualitative information, the field needed more substantial, evidence-based research that demonstrated its impact and efficacy in order to move the field forward and gain a more respected status. today, the field is witnessing a new generation of scientists and practitioners who have picked up the torch and are leading the way towards responsible growth and exemplary service. by the s, there was an awareness that companion animals could be used to alleviate human mental and physical health problems [ , , ]. people were eager to see how their love of pets was not trivial but part of our social commitment to help those in need [ , ]. the broad-base support fostered a media happy to report positive stories about hai and nurtured research studies using animals as therapeutic interventions for people in a variety of settings, creating a cultural confirmation bias [ ]. results have been varied owing to the difficulties associated with sample size, research design, and the difficulty to provide appropriate controls [ ]. while studies in support of animal contact receive media attention, a very large longitudinal cancer study showed a shorter survival time compared to non-owners, especially for female cat or bird owners [ ]. another example is the media often touts dogs as relieving stress but one study found the impact is somewhat exaggerated [ ]. also, while there was never extensive research money, there was more funding for animal-assisted therapy (aat) than for general animal studies of basic science value. the earlier studies often utilized older adults, as the elderly were perceived to benefit the most due to having less social opportunity, starving for physical contact, and clustering that made the sample more accessible and numerous [ ]. although the majority of older people do not live in institutions, there were many studies using nursing home populations [ – ]. in , the national institutes of health held a technology assessment workshop, announcing there are health benefits of animal companionship, and the summary report cover depicts an older woman with a cat on her lap [ ]. earlier studies relied on general observations and basic measures of change using interviews. initially, researchers had to develop their own survey instruments; thus, there was no validation, and comparing studies was not easy [ – ]. more recently, qualitative information, like questionnaires, has been combined with quantitative analysis of data, often referred to as a mixed methods approach [ ]. the earliest health issues addressed outside of the elderly population were focused on cardiovascular problems, which were prevalent and easy to assess, and the first aai article to appear in a recognized peer-reviewed medical journal demonstrated that animal ownership improved the one-year survival rate after a cardiovascular event [ ]. over the years, there has been much literature in this area of study [ – ]. now, there is an ever-growing interest to have animals facilitate activity, especially walking [ – ]. after the elderly, children were a common focus for aai research in part because children are grouped together, but mostly because of the belief that children like animals and animals are good for them [ , , – ]. today’s area of focus is autism [ – ], depression, trauma [ ], and posttraumatic stress disorder (ptsd) [ ], all emerging health and economic challenges to society. regardless of the area of study, there is a need for establishing methods and standards for aai studies [ – ]. regarding research articles related to the human-animal bond, hai, or human-animal relationships, int. j. environ. res. public health , , of both the rate of articles being published and the number of journals publishing these articles have steadily increased since the early s [ ]. aai, like all scientific endeavors, is influenced by technology. there is an ever-growing reliance on methods perceived to be more valid and objective to assess the changes caused by animal interactions. measurable physiological assessments, like oxytocin (looking for an increase) and cortisol (looking for a decrease), are becoming almost standard methods to assess stress in both humans and therapeutic animals [ – ]. in addition, there are a growing number of studies that assess stress and other aspects of autism using facial recognition, which does not require touching the subject [ – ]. for real-time assessment, wristband monitors measuring blood pressure, activity, and stress are being deployed for both the human subject and animal intervention [ ]. data analysis also has developed beyond basic statistical analysis of small samples to larger multisite studies, along with systematic review and meta-analysis of existing studies [ , , – ]. panel studies have been employed, studying the role of aai in the aging community [ ]. while some of the earliest uses of animals to improve the health of people were farm animals, modern studies most often use dogs, then companion horses [ – ], and, to a lesser extent, cats [ , ]. within the last three decades, other species have been used, including fish [ , , , ], birds [ ], guinea pigs [ ], and reptiles [ ]. there is now growing literature on the use of robots that resemble and behave like animals [ – ]. the use of animals is now appearing in therapeutic settings, such as emergency departments [ ], acute and hospice care [ , ], and elementary schools [ , ]. an ever-expanding area is the use of animals to prevent or diagnose health issues, such as detecting pathogens in the environment [ , ] or diagnosing cancers [ – ]. there is also a growing appreciation for the ethical issues surrounding aai, including the potential health risks associated with animal contact [ ], inappropriate animal ownership [ , ], and the misuse of animal assistance [ ]. we see not only passive concerns for the welfare of animals used in therapy, but also dedicated studies to objectively assess the stress and general welfare of animals used [ – ]. the limitations of aai must be recognized, so it can truly be for those people and animals that can benefit and objectively assess the science and public health value of the programs [ , , ]. most importantly, scholars must continue investigating the theoretical bases of aai/hai for the benefits of animals and nature in general [ – ]. this approach will improve the methods available for aai and the welfare and benefits for the animals [ ]. . advances in aai must consider animal welfare simply put, aai would not exist without animals. therefore, it is critical that we ensure the health and welfare of these beings in all aspects of aai. because the purpose of aai is to use an animal to directly benefit a human, it is of utmost importance that the animal is not negatively impacted. in the history of human-animal relationships, animals have largely been viewed from a utilitarian point of view. the question has changed from “what can we do to our animals” to “what can we do for our animals.” while benefits to humans utilizing aai are becoming more lucid, the benefits and consequences to the animals are not always clear or measurable. as the research begins to create a stronger evidence platform concerning the efficacy of aai, tedeschi questions if the field is ethically prepared to investigate the potential pressures on animals integrated into the interventions [ ]. a chasm exists between what human clinicians are trying to explore in working with their clients and a thorough understanding of the risks the animals may face in regard to their services. people and aai practitioners may assume these interventions are innocuous to the animals and that therapy animals typically enjoy the sessions. however, aai poses a unique set of stresses and strains on animals that the field has recently begun to acknowledge [ ]. the most discrete threats of aai to animal welfare are the risk of zoonotic disease transmission from human to animal and the mental and physical stress a therapy animal may endure because of the work. int. j. environ. res. public health , , of over the years, few studies have highlighted the potential stressors and challenges for animals participating in aai [ ]. reports in the literature commenting on the moral basis of animal-assisted therapies suggest that posttraumatic stress disorder (aaa) and aat exploit animals and may be detrimental to their well-being [ , ]. if aai is not effective or beneficial for humans and potentially threatens the animal’s welfare, the justification for the use of animals for this purpose is questioned [ – ]. fine discusses aai in terms of a cost/benefit balance. the cost/benefit balance addresses the implications of aai on the therapy animal’s quality of life [ , ]. to effectively safeguard the welfare of therapy animals, special considerations should be addressed before the animal enters therapy work, during therapy work, and after therapy work is complete. . . before therapy work perhaps the most important aspect of ensuring welfare of the therapy animal is choosing the right animal for the work. most aai organizations require the animal to pass a behavioral evaluation by a certified evaluator and a physical exam by a licensed veterinarian [ ]. the use of a veterinarian knowledgeable about the skills required of and potential stressors to a therapy animal during the selection process cannot be underestimated [ ]. this largely ensures the safety of the people interacting with the animal. the behavioral evaluation in dogs often constitutes a variety of tasks, including commands to sit, down, stay, come, and to walk on a loose lead. additionally, evaluators often assess the animal’s reaction to strangers, other animals, medical equipment, loud and/or novel stimuli, angry voices, and/or potentially threatening gestures, crowds of people, being patted in a vigorous or clumsy manner, and being restrained in a hug [ , ]. the animal should be placed in role-play scenarios representative of a typical aai encounter. the animal’s response to the aai role-play should be predictable, and the ideal aai animal should be friendly, confident, and composed. these traditional tests verify that the animal is non-aggressive during these challenges to assure human safety. although an animal may not demonstrate signs of aggression during a human-animal interaction, it does not necessarily mean the animal enjoys or is unstressed by the work. an obedient and trained animal may tolerate the interaction and behave accordingly but be internally distressed. in general, the animal should “enjoy” and seek interaction with strangers without showing signs of stress, fear, aggression, shyness, or avoidance [ ]. the process of selecting therapy animals should focus on the subtle behavioral signs of stress that are often overlooked to ensure that the animal desires human interaction and will be successful in all environments [ ]. future research should validate the accuracy of these evaluations in predicting successful working careers. in the ideal practice of true aat, the description of work and therapeutic goals should be specifically described and established beforehand, so an animal is selected only if it meets that job description [ ]. this contrasts the typical practice of aai, where the animal has already been screened and chosen simply because of availability. even if an animal may not be suited for a specific job description, the globally registered therapy animal is molded to meet those goals. however, to best uphold animal welfare, the “goodness of fit” model should be utilized to appropriately mesh the animal’s temperament or personality with the demands [ ]. this standard of practice requires premeditated thought, planning, and prioritization of animal welfare. a significant influence of animal welfare in aai that is not typically considered is the effect of the handler on the animal. the intimate dyadic relationship of the animal-handler team corroborates how the handler can impact the health and wellbeing of the animal. the handler is the gatekeeper of welfare and requires a minimum standard of education and skill to be safe and effective during aai. knowledgeable handlers must acquire an appropriate level of training in animal behavior and health. this training should include an emphasis on zoonotic disease; infection control practices; identifying appropriate contacts in the event of an accident or injury; reading an animal’s body language for signs of discomfort, stress, or fear; and patient confidentiality [ ]. to assess the level of understanding from this training, the handler should successfully pass an assessment that ensures minimum competency int. j. environ. res. public health , , of in aai. pet partners, a leader among aai organizations, advocates the power of the handler by championing the phrase, “yayaba,” an acronym for “you are your animal’s best advocate” [ ]. this illustrates a necessary commitment to assuring quality of interactions at both ends of the leash. future research should investigate the effect of the handler’s skills and knowledge on the health, welfare, and performance of therapy animals. . . during therapy work what is arguably the most intriguing aspect of animal welfare in aai is the effect therapy sessions have on the animals. the effect of the therapeutic session on outcomes of various physiologic parameters (most commonly cortisol) and behavioral signs of stress has been the most frequently investigated aspect of animal welfare in aai, although research in this area is still emerging. multiple studies have reported that cortisol levels increased in dogs after aai, [ – ] while others reported that cortisol levels did not change or decreased after aai [ , , , ]. the increases in cortisol may, on the surface, be concerning since cortisol elevation is typically associated with negative distress. however, these elevations simply indicate that therapy work is physiologically arousing to dogs, but whether the arousal is due to positive excitement or distress requires a concurrent assessment of behavior or other physiologic measures. many studies assessing behavior in therapy dogs have found no significant increases in stress behaviors during an aai session compared to baseline [ , , , ]. despite mixed results regarding the stress-related welfare concerns of working therapy dogs and a need for more research, the general practice of aai does not appear to be overtly harmful to animals that are appropriately selected and responsibly handled. however, specific questions regarding their use, such as the ideal duration and frequency of interventions, have yet to be answered with scientific evidence. the reason these questions are difficult to answer with blanket recommendations is because no single aai is identical, and each intervention will depend on the capacity of that particular animal engaging in that specific scenario. the stress an aai may place on an animal is dependent on a number of factors, including the handler, the participant, the environment, and the interaction itself [ ]. future research should investigate the effect these factors have on animal welfare. until more studies inform practice standards, it is up to skilled and knowledgeable handlers to uphold “yayaba” and continuously monitor and assess the behavior of their animals and relieve animals from work before aai becomes negatively impactful to their welfare. however, aai should not be constantly viewed in a cynical light from an animal welfare perspective, as human interaction also benefits the animal. human contact influences cardiovascular and hormonal outcomes that can be perceived as beneficial to the animal when the interaction consists of non-noxious sensory stimulation, including touch, light pressure, warmth, and stroking, as well as olfactory, auditory, and visual cues [ ]. human contact may also result in positive effects on endocrine function in animals, decreasing the activation of the hypothalamic–pituitary axis (hpa) and sympathetic nervous system [ , ]. the science surrounding the human-animal bond is particularly fascinating when it surpasses the question of exclusively positive or negative stress states and explores the complexity of how dynamic human-animal relationships influence cognition and emotion in the animal. current research is increasingly recognizing that animals are sentient beings that have the ability to experience emotions [ ]. a sentient being implies that the individual has the ability to experience emotional effects of pleasure and suffering. animals may have the ability to be empathic, which is a quality that has yet to be scientifically characterized and may be key to how an animal interacts with a human to bring about therapeutic benefit. for example, a person that is emotionally distraught and crying may cause an animal to instinctively make physical contact with the person to comfort him or her. this becomes a welfare concern when it is perceived that the animal absorbs and is adversely affected by negative emotion. the ability to understand whether an animal has the cognitive ability to process emotions is unknown but may be elucidated with advances in technology and diagnostics to better understand cognition and wellbeing. functional magnetic resonance imaging (fmri) permits int. j. environ. res. public health , , of assessment of brain activity by detecting changes associated with blood flow in real time, demonstrating that different parts of the brain in dogs activate with different stimuli [ ]. while this modality has the potential to demonstrate what truly goes on inside the head of a dog during aai, its use is limited because the dog needs to be trained to enter the fmri unit and remain still during the entire evaluative process [ ]. however, other advances in diagnostics and better understanding the meaning of changes in various hormones make studying the effect of human interaction on the animal more attainable. dogs that received positive human interaction not only experienced decreases in heart rate and blood pressure, but also significant increases in β-endorphin, prolactin, phenylethylamine, and dopamine levels associated with bonding, euphoria, pleasure, and happiness, suggesting positive effects of human interaction [ ]. oxytocin, often referred to as the “love” hormone because its increase is associated with positive interactions, such as maternal-infant bonding, friendships, marriage, and sex, has been of particular interest to study the positive emotional state in dogs after human contact [ ]. in addition, the quantification of physiologic variables, such as heart rate variability (hrv) [ , ], immune status through neutrophil to lymphocyte ratios [ – ], acute phase proteins [ , ], and salivary immunoglobulin a, [ , ] may provide information regarding the stress state of the animal. the study of animal emotion, stress, and welfare is generally challenging, and requires simultaneous assessment of multiple physiologic and behavioral parameters. future studies on the effect of aai on animals should incorporate a variety of measures to obtain a comprehensive assessment of the animal. the most assured recommendation to safeguarding welfare during the work is preventing the transmission of zoonotic disease by consistent hand washing [ ]. there is evidence that therapy dogs have become colonized with clostridium dificile (c diff), as well as methicillin-resistant staphylococcus aureus (mrsa) [ – ], after visiting human healthcare settings. although the animals were not clinically infected or ill, the potential for infection in the animal or the transmission to other individuals still exists. since practices, such as shaking paws, getting up on beds, licking faces, and taking treats, were risk factors for colonization of mrsa and c diff, these activities should be avoided or kept to a minimum whenever possible. hand washing is essential to the health of the animal and to all individuals who encounter that animal. . . after therapy work the welfare of the therapy animal after the aai or the notion that therapy animals should “retire” from work is a topic that has received attention in the literature. every being that has a job should be granted the reward of retirement from said job. from an animal welfare perspective, retirement is a critical and necessary phase of every therapy animal’s life. the aai field should embrace the concept that that an animal may be relieved of duties if welfare is compromised during the work. retirement is typically regarded as a well-deserved reward earned after a lifetime of work, but the termination of an animal’s career may also carry negative implications for animal, handler, and human participants in these interventions, particularly if retirement is not willingly chosen. an animal that thrives on human interaction may be frustrated when a change in physical health status warrants retirement. another ethical conundrum presents itself when the therapy animal is ready to retire, but the handler and or the participants are not ready for the animal to retire. the ending of a therapy animal’s career is inevitable and can be challenging to navigate. understanding the best time to retire and how to retire gracefully may minimize the consequences of ending this work. future research should investigate the ideal time for retirement and how to appropriately retire an animal from work. . . the future of animal welfare in aai while the field of aai has turned attention to the welfare of the therapy animals, our current knowledge of the way aai impacts the welfare of participating animals is still limited, with few studies rigorously evaluating its short- and long-term effects. since aais are so variable and dependent on the individuals and circumstances, controlled prospective trials are scarce. research utilizing innovative int. j. environ. res. public health , , of methods of animal welfare assessment and cognition should continue to inform the best practice standards to ensure the welfare of these animals. in addition, practice should elicit pertinent research questions by consistently reporting adverse outcomes and events from aai. one important aspect of aai to address is how researchers ensure the ethical treatment of the animals in aai. regardless of the research subject, any study that includes living beings warrants ethical review. while the institutional review board (irb) oversees the ethical treatment of humans in research, the institutional animal care and use committee (iacuc), also termed as an animal ethics committee or animal welfare committee, oversees the ethical use of animals in research. it is the role of the iacuc to oversee an institution’s animal research programs, facilities, and procedures. iacuc oversight has been underutilized in aai research [ ], and the involvement of this committee is warranted to safeguard the use of animals in any study. furthermore, the ability to replicate research methods is necessary for growth in the field, and most aai manuscripts lack details to successfully reproduce a protocol. minimum details that should be included in every aai study are age, sex, species/breed, veterinary health status, training/certification, frequency, duration of intervention, and length of study. the incidence of adverse events, including infectious disease or injuries, should always be reported. rigorous review and descriptions of animals in this type of research contributes to the quality and growth of the field of aai. those engaged in aai should be cognizant of the welfare of their therapy animals and incorporate practices supporting animal well-being. fine and mackintosh stress our moral responsibility to listen to therapy animals’ silent communications and make decisions that are in their best interest, placing animal welfare at a comparable level to patient outcomes [ ]. some therapy animals face challenges in their roles, both during their daily interactions or while preparing and returning from sessions. additionally, other dilemmas may stem from various life situations, including declining health and retirement, leading to a decreased workload, modified interactions, or stopping work all together. in reaching these decisions, it is important to keep the wants and needs of the animal in mind. we must continually monitor the animals’ welfare and develop methods to measure fatigue and stress to achieve the best possible outcomes for both animals and humans. globally instituted measures can help avoid pitfalls and safeguard the animals. the field has come a long way in asking not just what your animal can do for you, but what can you do for your animal. . professionalization of aai as the field continues to evolve and more disciplines become involved in the movement, there is a need for more clarity about the aai spectrum and the requirements for practitioners to best implement these services. the international association of human–animal interaction organizations (iahaio) published a white paper titled, “the iahaio definitions for animal assisted activity and guidelines for wellness of animals involved” in march . those appointed to serve on the formulation task force for the paper were academics, veterinary medicine professionals, and practitioners from different countries with a background in, or special knowledge of, varied dimensions in the field of hai. the “task force was established and charged with the responsibility of clarifying and making recommendations on aai and aaa terminologies and definitions and outlining ethical practices for the wellbeing of animals involved” [ ]. it is the authors’ opinions that these are the most current definitions and should be utilized for the clarification of the definition of various aspects of aai. over the course of the past twenty years, we have witnessed not only more research on the efficacy of aai, but also more specific research investigating the impact of various types of interventions with specific populations. for example, o’haire et al. prepared a systematic review of animal assisted interventions and their impact in working with persons that experienced trauma [ ]. the team identified several studies that demonstrate the efficacy of applying these principles with children who are victims of abuse and some preliminary research on understanding how aai can be valuable with war veterans. furthermore, o’haire also prepared similar papers on demonstrating the value of aai with persons with autism [ , ]. she provided insights on how aai could be applied effectively int. j. environ. res. public health , , of with persons with asd. gabriels et al. and grandin et al. also provided insight into how equine assisted interventions can be implemented effectively with this population [ , ]. finally, schuck et al. provide a comprehensive discussion on how aai can provide support for children who have executive functioning disorders, specifically adhd [ – ]. the unique aspect of schuck’s work was the development and application of a specific protocol incorporating canine assisted interventions. this protocol has been replicated several times with similar outcomes. one of the recommendations from o’haire’s work was the need to provide detailed information with regard to procedures so that independent research teams could continue to validate the efficacy of protocols [ ]. she strongly suggested publishing manuals for more widespread use. this is now being done by more practitioners to try to disseminate the work being incorporated. for example, schuck is working on completing the pack manual, which details the procedures and the training necessary to incorporate aai with children with adhd in clinical settings. as aai continues to evolve, more specificity in its application in various environments and with diverse populations continues to evolve. fine reports about the diverse setting, where aai continues to expand from more accepted roles (i.e., hospital-based settings, nursing homes, and schools) to roles as stress buffers in forensic courtrooms and disaster areas [ ]. all of these new expansions will need further research and evidence to clarify how they can best be practiced. however, the findings of the research in many of these areas has clearly identified the value of aai with these various populations. for example, fine and friedmann have noted that much of the research on the contribution of human-animal interactions to social interaction in older adults is derived from studies of animal assisted interventions for individuals with cognitive impairment who reside in long-term care facilities [ ]. a synthesis of the findings from the research seems to indicate that aai improved both the quantity and the quality of social interaction in the elderly population [ ]. furthermore, several studies with older adults demonstrated that human-animal interactions lead to decreases in depression among psychiatric patients, individuals with disabilities or individuals who live in assisted living facilities [ – ]. additionally, findings from research also pointed out that pet ownership tended to be associated with survival of seniors living independently in their community who had experienced a heart attack. these individuals also appeared to have fewer symptoms of depression [ ]. on the other hand, over the past fifteen years there has been strong interest in studying the value of including animals in educational settings [ ]. currently, several studies have been initiated investigating the impact of incorporating various species of animals in supporting the cognition, social competence and motor development of the children. findings from these studies have been very promising [ , – ]. furthermore, an area that has received a great deal of interest pertains to the impact that dogs have in supporting students in reading. hall et al initiated a systematic review on this topic and examined studies specifically on teaching benefits of children reading to dogs [ ]. the researchers suggested that there is positive evidence indicating the value of reading to a dog. they believe that one of the strongest benefits is derived from the interaction between the dog and the child. it appears that the dog has an impact on the child’s mood elevation. furthermore, in their review of the literature, the authors also suggested that the relationship between the dog and the child appears to have an impact on the child’s arousal level while reading. in essence, children that are comfortable with the dogs and have positive interactions, appear to have a decrease in their anxiety in reading to another. looking into the future, our shared vision must promote the professionalization of the field of aai in becoming a more recognized form of complementary medicine in order to gain the stature of being a valued treatment modality. the national center for complementary and alternative medicine (nccam), one of institutes of the nih in the united states, defines complementary medicine as “using a non-mainstream approach together with conventional medicine” [ ]. aai fits well within this definition, as it is typically incorporated with traditional forms of therapy, such as psychotherapy and occupational and physical therapy. int. j. environ. res. public health , , of fine et al. report that continuing education and certification of competencies may very well be the key in taking aai to the next level of field-focused growth, especially in terms of building credibility and moving toward acceptance as a complementary therapy [ ]. we believe that the future will require specific and mandated education and training to ensure effective, safe, and reliable treatment options. academia’s role is critical in becoming a clearinghouse for information, education, and research applicable to various professions. . public policy: changing one mind at a time according to mccune et al., scientific research has always been used to better understand the world around us and to help us validate or demystify our theories and preconceived notions [ ]. it is only logical that research will be used to advance the field of aai and answer many questions that are posed by the field. feldman et al. argue that society needs science to document the positive benefits of human-animal interaction in order to make changes to present-day policies [ ]. policymakers, health care professionals, and other decision-makers need scientific data to advocate more positively for the value of hai. when such information is made available, the gatekeepers of public policy and resources will be more receptive to open up new opportunities for aai. although we have made great strides in public awareness of the value of co-existing with animals, according to arkow, bureaucrats seem to be more interested in specific outcomes that demonstrate tangible benefits for humans [ ]. arkow, in a presentation entitled “learn what the monster likes and feed it,” stresses that officials in health organizations, education, and various levels of government do not seem to be primarily influenced by specific animal welfare issues [ ]. rather, they appear responsive to outcomes where animals in our communities, homes, and therapy make a difference to people’s health, safety, and economics. we strongly urge the research community to develop a platform for public policy that bridges research with practice, supporting the value of aai. these translational research efforts that bridge both research and practice will inform and drive public policy. while more scientifically based evidence will always be needed to convince skeptics, the broader societal trajectory for aai suggests that the movement from research to practice is accelerating. the challenge then is to attempt to document needed best practice information for practitioners, and to support those practices with enlightened public policies, even as vital research continues. for example, more attention is needed to understand best practice approaches, which include the specific type of intervention and how much time and intensity is needed to find a change (dosage questions). feldman et al. conclude by suggesting that research can help determine how to impact the greatest number of people in need and implement interactions already utilized in current practice [ ]. research can drive practice, and practice can drive research. when research and practice complement each other, we can drive public policy change, especially when the information pipeline is established and key parties are constantly informed. . conclusions in , steve jobs, the founder of apple, gave a commencement speech at stanford university. it was perhaps his most prolific speech, as he encouraged new graduates to aspire to be their best. in his speech, he notes, “you cannot connect the dots looking forward; you can only connect them looking backwards, so you have to trust that the dots will somehow connect in your future” [ ]. the dots in aai are continuing to connect. the field began with leadership who became infatuated with what they witnessed. levinson and the corsons observed first-hand the impact of patient interactions with warm-hearted dogs. their anecdotal findings and early efforts inspired generations of researchers and clinicians to study and develop more reliable and effective interventions incorporating therapeutically designed hai. the field’s landscape over years later looks very different but still possesses some of the same passion for unearthing the power within human-animal connections. we are beginning to understand what some have intuitively believed for centuries: having animals in our lives can be good for most int. j. environ. res. public health , , of of us. connecting the dots backwards allows us to see how these serendipitous findings began a movement the early pioneers would be proud to endorse. there is a paradigm shift as the field continues to evolve that will help solidify and clarify the benefits of aai. this shift is taking place because of the efforts of both the scientific community and those engaged in clinical practice. with the help of researchers, the field continues to flourish by studying not only the impact of these interactions, but also the biological mechanisms that are changing in both humans and their animal counterparts. the better-trained group of interdisciplinary professionals continues to develop more evidence-based interventions, underscoring the efficacy of this shift in approach. the ultimate beneficiaries are both clients and animals. the field will benefit most by focusing on the objectives to use evidence-based outcomes to inform practice standards; to apply techniques that ensure animal wellbeing; to share universal resources, terminology, and practice standards; to advocate aai in public policy; and to provide formal training and education that promotes professionalization of the field. as steve jobs elegantly noted, you have to trust that the dots will connect sometime in the future. the aai field will continue our efforts to connect the dots towards the future by developing a research and practice platform that continues to investigate the impact of human-animal connections. author contributions: a.h.f., a.m.b. and z.n. collaborated on preparing and authoring the article. acknowledgments: the authors would like to thank amanda hand and nikki chiang for their support in preparing the document for publication. conflicts of interest: the authors declare no conflict of interest. references . fine, a. incorporating animal assisted interventions in 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https://singjupost.com/full-transcript-steve-jobs-stay-hungry-stay-foolish-speech-at-stanford- / https://singjupost.com/full-transcript-steve-jobs-stay-hungry-stay-foolish-speech-at-stanford- / http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	introduction 	a glimpse at our history 	the need for research and evidence: connecting the dots from past to present 	advances in aai must consider animal welfare 	before therapy work 	during therapy work 	after therapy work 	the future of animal welfare in aai 	professionalization of aai 	public policy: changing one mind at a time 	conclusions 	references s o u r c e : h t t p s : / / d o i . o r g / . / b o r i s . | d o w n l o a d e d : . . case report open access isolation of streptococcus agalactiae in a female llama (lama glama) in south tyrol (italy) alexander tavella * , astrid bettini , monia cocchi , ilda idrizi , stefano colorio , laura viel , claudia zanardello and patrik zanolari abstract background: streptococcus agalactiae is pathogenic for both animals and humans. in dairy cattle it commonly causes mastitis, with great economic losses, and there is scientific evidence of mastitis, caseous lymphadenitis, contagious skin necrosis and purulent infections associated with s. agalactiae in camels (camelus dromedarius) as well. in humans, it is a common component of the respiratory and gastrointestinal microflora, but it can also act as a pathogen, especially in elderly people and immunocompromised patients, as well as in pregrant women and newborns. case presentation: a -year old non-pregnant female llama (lama glama) was conferred to the institute for animal health control, in bolzano for necropsy after sudden death. the animal had not shown unusual behaviour and had a low to normal nutritional condition (body condition score / ). the breeder had reported a chronic suppurative subcutaneous infection in the intermandibular area, resistant to therapy (therapy unknown). after necropsy, several samples were processed for histological, bacteriological and parasitological examinations. conclusions: this report describes, to the best of our knowledge, the first isolation of s. agalactiae in llamas (lama glama). the animal came from a herd that counts approximately south american camelids (llamas, alpacas) along with several horses, chicken, rabbits, cats and dogs; this farm offers services, such as trekking and pet therapy activities. keywords: streptococcus agalactiae, lama glama, south american camelids, lancefield group b streptococcus background llamas and alpacas have gained increasing interest in the last years and are now frequently held as farm an- imals and for hobby purposes (trekking, pet therapy) in the alpine regions of northern italy. in the autonomous province of bolzano – south tyrol (italy), the south american camelids (sacs) population has grown lately and currently counts individuals ( llamas and alpacas – informations from the local veterinary service -databank), representing an important niche product in local livestock breeding. in fact, sacs are often held in multispecies farming systems with sheep and horses, and could come into close contact with humans for trekking and pet therapy reasons. streptococcus agalactiae (s. agalactiae), a lancefield group b streptococcus (gbs), is an important pathogen affecting both animals and humans [ ]. in dairy cattle, it is a major cause of mastitis and an important source of economic loss [ ]. gbs have also been found in many other animals, such as camels, dogs, cats, crocodiles, seals, fish and dolphins [ – ]. more in detail, s. agalac- tiae has been frequently observed in camels (camelus dromedarius), as a causative agent of mastitis, caseous lymphadenitis, contagious skin necrosis and purulent in- fections [ – ]. moreover, authors described that the camel strains are different from the bovine strains, and that they resemble much more the human strains [ ]. to our knowledge, no s. agalactiae strains have been isolated from llamas (lama glama). s. agalactiae has also been observed in humans. it is a common component of the microflora of the respiratory and gastrointestinal tracts, approximately isolated in * correspondence: atavella@izsvenezie.it istituto zooprofilattico sperimentale delle venezie, viale dell’università , legnaro, italy full list of author information is available at the end of the article © the author(s). open access this article is distributed under the terms of the creative commons attribution . international license (http://creativecommons.org/licenses/by/ . /), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated. tavella et al. bmc veterinary research ( ) : https://doi.org/ . /s - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf http://orcid.org/ - - - mailto:atavella@izsvenezie.it http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / % of healthy humans. in the elderly and in immuno- compromised patients, this bacterium can be associated with urinary tract and skin and soft-tissue infections, bacteremia, osteomyelitis, meningitis and endocarditis [ , ]. moreover, in pregnant women, invasive maternal infection is associated with abortion, preterm delivery [ ], sepsis and meningitis in newborns [ ]. in humans, invasive infections caused by s. agalactiae are reported increasingly worldwide [ ]. in the pathogenetic mech- anism, the adherence to host epithelial cells is the first critical step of the infectious process, leading to the for- mation of microbial biofilms. these consist of microco- lonies encased in extracellular polysaccharide material. bacteria inside biofilms have increased resistance to anti- microbial agents and disinfectants [ ]. furthermore, the production of biofilms is correlated with both patho- genicity and virulence of the bacteria. in this report, we describe the case of a -year-old non-pregnant female llama (lama glama), conferred for necropsy to the institute for animal health control (istituto zooprofilattico sperimentale delle venezie, izsve) in bolzano (italy) after sudden death. case presentation clinical history the animal had been kept all summer with other six llamas on an alpine pasture, but it originated from a lar- ger llama breeding farm where no s. agalactiae-cases were ever recorded. the affected llama had not shown an unusual behavior. the breeder reported a chronic suppurative subcutaneous infection in the intermandibu- lar area, that had persisted for several months. the nu- tritional condition of the individual was low to normal (body condition score / ) and was evaluated through adspection and palpation of the thorax, the abdomen and the back [ ]. the animal was found dead by the breeder on the alpine pasture. necropsy the physical exam revealed a – cm fistulating lump in the intermandibular area. after removing both hair and skin surfaces, a delimited suppurative infection site was observed in the subcutaneous tissue, in form of an ab- scess. inspection of the anatomic area did not reveal a connection to the animal’s oral cavity. a diffused sub- cutaneous oedema was noted in the intermandibular area, as well as in the neck and the caudal portion of the head. the retropharyngeal lymph nodes were enlarged and oedematous. after opening the lump, a yellowish creamy content was observed. the exam of the abdominal cavity showed a severe sero-fibrinous ascites. the c intestinal compartment showed a catarrhal-haemorrhagic inflammation of the mucous membrane, while the proximal part of the bowel portion was hyperaemic; furthermore, a catarrhal duode- nojejunitis was recognized. a severe nematode larvae in- festation was identified in the intestinal content. the liver had a light brown colour and a brittle consistency and showed a diffused necrosis. in the thoracic cavity, a high-grade of sero-fibrinogenous pleural effusion was identified. the lung showed a pro- nounced oedema, as well as emphysematous areas; further- more, an interstitial pneumonia was observed. the pericardium and heart base were oedematous. no other pathological lesions were observed in any other organ. selected samples from liver and lung tissues were rou- tinely processed for histopathological examination. moreover, bacteriological examinations from the inter- mandibular abscess, the liver and the lungs were per- formed by routine laboratory tests, using blood agar (in-house protocol) at ± °c in aerobiosis for h. the flotation procedure was performed, using a solution with specific gravity of . . histology samples of lung and liver parenchyma were first col- lected and fixed in % neutral buffered formalin, then processed, paraffin embedded, stained with haematoxy- lin and eosin (he) and observed by standard light mi- croscopy for histological examination. a diffuse mild to moderate neutrophilic and lymphocytic interstitial infil- tration with alveolar emphysema was observed in the lung parenchyma (fig. ). while examining the liver parenchyma, a multifocal necrosis of hepatocytes with foci of neutrophilic and lymphocytic infiltration and diffuse hydropic degener- ation of hepatocytes were detected (fig. ). bacterial examination after incubation, a pure culture of translucid grey colonies, with a complete ß hemolysis was submitted for identifica- tion. gram staining revealed gram positive cocci in linear chains, catalase negative, and esculin negative as well. to confirm the presence of ß hemolytic streptococci, the camp test was performed, indicating a positive re- action, the serological assay (streptococcalen grouping kit, oixoid, wade road, basingstoke, hampshire, uk) was performed as well, showing group b antigens. bio- chemical identification of isolates (api® strep, bio- méerieux, marcy-l’etoile, france), revealed s. agalactiae (profile: ; %id = . ; t = . ), with an ex- cellent level of genus identification. s. agalactiae was isolated from the purulent material of the intermandibular abscess and from the pulmonary parenchyma. biofilm formation was evaluated using micro titer plates as described by stepanovic and coworkers [ ]. tavella et al. bmc veterinary research ( ) : page of fig. lung - mild to moderate neutrophilic and lymphocytic interstitial infiltration with alveolar emphysema. presence of a thrombus in the blood vessel. he, x fig. liver – foci of necrosis of hepatocytes with neutrophilic infiltration. he, x tavella et al. bmc veterinary research ( ) : page of in order to confirm the identification of the isolated strains obtained from the abscess and from the lung, matrix-assisted laser desorption/ionization time-of- flight mass-spectrometry (maldi tof ms) (maldi biotyper, bruker daltonics) was performed. this tech- nique allows the identification of a bacterium by deter- mining the molecular mass of fingerprint peptides (mainly ribosomal proteins), and comparing the mass fingerprint of the unknown strains to a database containing reference mass fingerprints. as specified by the manufacturer, a score value of < . indicates that identification is not reli- able, scores between . and . demonstrate that identifi- cation is reliable at the genus level, scores between . and . evidence that identification is reliable at the genus level and probable at the species level. scores higher than . indicate highly probable species identification. s. agalactiae strains were recognized with a score of . (abscess isolate), and a score of . (lung iso- late), indicating a highly probable species identification. the strains formed biofilms under in vitro conditions, and were identified as moderate biofilm producers. determination of the minimum inhibitory concentration (mic) minimum inhibitory concentration (mic) of the lung and abscess isolates was evaluated in accordance with the guidelines of the clinical and laboratory standards institute [ ] for microwell dilution testing, using a commercial plate (micronaut-s, merlin, kleinstrasse , bornheim, hersel, germany). the antimicrobials tested were ampicillin, ceftiofur, enrofloxacin, florphenycol, spec- tinomycin, tetracycline, tilmicosin, trimethoprim/sulpha- methoxazole. the mic results are shown in table . parasitology parasitology of the feces reported an elevated number of oval eggs with a thin single wall, measuring approximately x μm, attributable to strongyloides spp.. several eggs had transformed to the larval stage. furthermore, yellow- brownish eggs (approximately × μm) showing a “lemon” shape with evident stoppers at the poles referred to trichuris spp. were observed. the elevated number of eggs observed at the microscope and the evidence of the se- vere enteral parasitaemia allowed the indirect evaluation of the infestation intensity. molecular characterization both isolates were submitted for s sequencing. the alignment using the ncbi genbank blast function (additional files and ) and the clustal omega appli- cation (additional file ) confirmed the identification of s. agalactiae. discussion and conclusions s. agalactiae has already been isolated from skin lesions, periarticular abscesses and mastitic udder in camelids (camelus dromedarius) [ , , ]. furthermore, it has been described as an opportunistic pathogen of the upper respiratory tract [ ]. s. agalactiae has been iso- lated from caseus lymphadenitis, contagious skin necro- sis and purulent infections in camels [ ]; it has also been observed in wounds caused by hyalomma spp. in drom- edaries in kenya [ ]. so far, no s. agalactiae have been described in llamas, instead s. zooepidemicus, s. pyo- genes, s. faecalis and s. uberis have been isolated from alpacas in peru [ ]. therefore, to the best of our know- ledge, this represents the first isolation of s. agalactiae from llamas (lama glama). in this report, the identification of s. agalactiae was performed in an abscess and in the lung parenchima in an animal presenting a parasitic infestation. parasitism in sacs has become a major health con- cern, as several parasites, in particular gastrointestinal nematodes, are believed to cause mild-to-severe clinical diseases and economic losses. although death from parasitic gastroenteritis associated with gastrointestinal nematodes may occur, infections tend to be more insidi- ous, often presenting nonspecific clinical signs (i.e. diar- rhoea, anorexia and poor growth) or asymptomatic conditions [ ]. domesticated sacs, comprising llamas, often share pasture with other livestock species and are often farmed under more intensive grazing conditions as in their native countries, factors which may significantly increase the risk of nematode infections [ ]. in the present case, an elevated number of eggs attributable to strongyloides spp. and trichuris spp. were observed: this has been identified in the large intestine of sacs in pre- vious studies as well [ – ]. infections with trichuris spp. can lead to severe anemia [ ], even though many clinical signs are often absent at the early stages of infec- tion [ ]. the abdominal cavity lesions observed can be ascribed to the intense infestation by gastrointesintal table inhibitory concentrations of the isolated s. agalactiae strain strain ampicillin μg/ml ceftiofur μg/ml enrofloxacin μg/ml florfenicol μg/ml spectinomycin μg/ml tetracycline μg/ml tilmicosin μg/ml trimethprim/sulfamethoxazole μg/ml abscess . . . . . / . lung . . . . . / . tavella et al. bmc veterinary research ( ) : page of nematodes [ , ]. moreover, this could act as a predis- posing factor for septicemic streptococcosis. s. agalactiae is a component of the microflora of the respiratory, genital and gastrointestinal tracts in both humans and ruminants. in humans, gbs is also an im- portant cause of morbidity and mortality in newborns, in the elderly and in immunocompromised adults [ ]. primary manifestations include bacteremia, skin and soft tissue infections, while other signs are referred to pneu- monia, osteomyelitis and urinary tract infections [ , ]. furthermore, invasive infections are increasingly reported worldwide: takahashi and coworkers [ ] have highlighted significant differences in clinical aspects, including prog- nosis, between disease-entities caused by s. agalactiae and other streptococci in human diseases. in veterinary medi- cine, s. agalactiae is the main cause of subclinical mastitis in cattle. to our knowledge, no report of septicemic con- ditions have been observed in sacs. in other species, the bacterial colonization and infection requires the capacity of the bacterium to adhere and to persist. the formation of biofilm-like communities could facilitate microbial sur- vival and proliferation by enhancing resistance to host de- fenses and nutrient deprivation [ ]. in our report, the isolates were indeed biofilm producers. the production of biofilm was correlated with pathogenicity and virulence of some bacteria [ ]. in fact, microorganisms inside biofilms have increased resistance to antimicrobial agents and dis- infectants, indicating the pathogenicity potential in the isolated strains. the analysis of virulence factors produc- tion was not performed in this report, though previous re- ports have highlighted the potential of virulence factors production by s. agalactiae in bovine mastitis [ ]. fur- thermore, biofilm formation appears to be a prerequisite for colonization of the bovine mammary gland. s. agalac- tiae isolates recovered from bovine subclinical mastitis produced different ph-dependent biofilm levels, sug- gesting that biofilm production is modulated by envir- onmental factors [ , ]. no data are available for isolates from llamas. identification of the bacteria was performed by a com- merical kit and by maldi tof ms. this last procedure is routinely used in many laboratories, and has shown to be a rapid and reliable technique for the identification of veterinary bacteria [ ]. furthermore, lartigue and co- workers [ ] have identified over s. agalactiae iso- lates, further charachterized by serotyping and multilocus sequence typing, with the use of maldi tof ms. based on the previously described evaluation scores, a score higher than . allows the highly probable species identifi- cation. in this case report, s. agalactiae strains were iden- tified with a score of . (abscess isolate), and a score of . (lung isolate). the determination of mic was performed in order to evaluate potential antimicrobial resistances. since no clsi official breakpoints are available for llamas, and in order to provide a laboratory result, the mic results (table ) were evaluated using the bovine clinical break- points, even though several authors have observed that llamas, but also other sacs, and bovines present differ- ent pharmacokinetics and pharmacodynamics [ , ]. the evaluation, with bovine breakpoints, highlights sen- sitivity to all antimicrobials tested. while no official breakpoints are available for sacs, non official break- points have been proposed for ampicillin, ceftiofur and enrofloxacin [ ]. based on these data, the mic results would suggest ampicillin and ceftiofur sensitivity by iv and im administration, and an intermediate resistance to enrofloxacin by iv administration. the breeding of sacs in the autonomous province of bolzano – south tyrol (italy) has grown considerably in the last years, conveying our province a leading pos- ition in this field. these animals have gained great fame especially as hobby animals in zoos, private hotel gar- dens, as trekking animals and for pet therapy purposes, leading to a close contact between animals and humans, pointing out the possible risk of the transmission to humans. in fact, transmission of s. agalactiae from animals to humans has been briefly described in cattle [ , ]; the authors describe a probable linkage between cattle expos- ure and detection of gbs in humans, stating that s. agalac- tiae can be transmitted between bovines and humans in a farm environment and that increased cattle exposure is as- sociated with higher risk of infection. to this regard, no data are available for sacs, and molecular characterization of the isolates should be performed in order to establish the zoonotic potential of s. agalactiae. additional files additional file : blast allignment of the abscess isolate. (pdf kb) additional file : blast allignment of the lung isolate. (pdf kb) additional file : clustal omega allignment. (pdf kb) abbreviations camp test: christie atkins munch petersen test; clsi: clinical and laboratory standards institute; gbs: lancefield group b streptococcus; he: haematoxylin and eosin; im: intramuscolar inoculation; iv: intravenous inoculation; izsve: istituto zooprofilattico delle venezie; m/z: mass to charge ratio; maldi tof ms: matrix- assisted laser desorption/ionization time-of-flight mass spectrometry; mic: minimum inhibitory concentration; s. agalactiae: streptococcus agalactiae; sacs: south american camelids acknowledgements n/a funding n/a availability of data and materials all data generated or analysed during this study are included and shared in this article. tavella et al. bmc veterinary research ( ) : page of https://doi.org/ . /s - - - https://doi.org/ . /s - - - https://doi.org/ . /s - - - authors’ contributions at performed necropsy and developed the manuscript, ab co-authored the manuscript, mc performed bacteriological examinations, ii performed necropsy and parasitology, sc co-authored the manuscript, lv executed maldi-tof and mic examinations, cz performed histopathological examinations, pz provided scientific and technical support. all authors read and approved the final manuscript. ethics approval and consent to participate no ethical approval was required. consent for publication no personal data was included in the manuscript; no consent for publication was applicable. competing interests the authors declare that they have no competing interests. publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. author details istituto zooprofilattico sperimentale delle venezie, viale dell’università , legnaro, italy. clinic for ruminants, vetsuisse-faculty, university of bern, bremgartenstrasse a, bern, switzerland. received: february accepted: october references . fischer a, liljander a, kaspar h, muriuki c, fuxelius hh, bongcam-rudloff e, de villiers ep, huber 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https://doi.org/ . / / https://doi.org/ . /j.bmj. . . 	 	case presentation 	clinical history 	necropsy 	histology 	bacterial examination 	determination of the minimum inhibitory concentration (mic) 	parasitology 	molecular characterization 	discussion and conclusions 	additional files 	abbreviations 	acknowledgements 	funding 	availability of data and materials 	authors’ contributions 	ethics approval and consent to participate 	consent for publication 	competing interests 	publisher’s note 	author details 	references [pdf] the effects of animal-assisted therapy on loneliness in an elderly population in long-term care facilities. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /gerona/ . .m corpus id: the effects of animal-assisted therapy on loneliness in an elderly population in long-term care facilities. @article{banks theeo, title={the effects of animal-assisted therapy on loneliness in an elderly population in long-term care facilities.}, author={marian r. banks and w. banks}, journal={the journals of gerontology. series a, biological sciences and medical sciences}, year={ }, volume={ }, pages={ m - } } 	marian r. banks, w. banks 	published 	medicine 	the journals of gerontology. series a, biological sciences and medical sciences background animal-assisted therapy (aat) is claimed to have a variety of benefits, but almost all published results are anecdotal. we characterized the resident population in long-term care facilities desiring aat and determined whether aat can objectively improve loneliness. methods of residents, met inclusion criteria for the study. these residents were administered the demographic and pet history questionnaire (dphq) and version of the ucla loneliness scale (ucla-ls). they were… expand view on pubmed academic.oup.com save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations results citations view all figures, tables, and topics from this paper 	 table 	 table 	 figure 	 table 	pet animal 	scientific publication paper mentions blog post loneliness is bad for your health msutoday - all stories april news article gallery: therapy cats are too cute to ban from hospitals popular science march citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency the effects of group and individual animal-assisted therapy on loneliness in residents of long-term care facilities 	marian r. banks, w. banks 	psychology 	 	 	view excerpts, cites background and results save alert research feed effects of an animal visitation intervention on the depression, loneliness, and quality of life of older people: 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references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators blog posts, news articles and tweet counts and ids sourced by altmetric.com terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue safer wards: reducing violence on older people's mental health wards bmj quality improvement reports ; u .w doi: . /bmjquality.u .w safer wards: reducing violence on older people's mental health wards juliette brown, waleed fawzi, cathy mccarthy, carmel stevenson, solomon kwesi, maggie joyce, jenny dusoye, yasin mohamudbucus, amar shah east london nhs foundation trust abstract through the safer wards project we aimed to reduce the number of incidents of physical violence on older people’s mental health wards. this was done using quality improvement methods and supported by the trust’s extensive programme of quality improvement, including training provided by the institute for healthcare improvement. violence can be an indicator of unmet needs in this patient population, with a negative effect on patient care and staff morale. reducing harm to patients and staff is a strategic aim of our trust. we established a multi-disciplinary group who led on the project on each ward and used a pareto diagram to establish the focus of our work. we established a dashboard of measures based on our incident reporting system datix, including number of incidents of violence, days between incidents, days of staff sickness, days between staff injury, use of restraint, and use of rapid tranquilisation (the last two being balancing measures in the reduction of violence). each team identified factors driving physical violence on the wards, under headings of unmet patient needs, staff needs and staff awareness, which included lack of activity and a safe and therapeutic environment. using driver diagrams, we identified change ideas that included hourly rounding (proactive checks on patient well-being), the addition of sensory rooms, flexible leave for patients, and a structured activity programme. we also introduced exercise to music, therapeutic groups led by patients, and focused on discharge planning and pet therapy, each of which starting sequentially over the course of a one year period from late and subject to a cycle of iterative learning using pdsa methods. the specific aim was a % decrease in violent incidents on three wards in city and hackney, and newham. following our interventions, days between violent incidents increased from an average of three to an average of six. days between staff injury due to physical violence rose from an average of eight (one violent incident resulting in staff injury every eight days) to (one incident every days). incidents of physical violence reduced from in to in . we were also able to quantify reduced costs associated with reduction in violence. the success of this project in our view lay in the involvement of ward staff in understanding the problems and generating local solutions which were also broadly evidenced based. patients were also closely involved in generating ideas. we are currently incorporating much of this work into routine practice in order to sustain improvement, as well as continuing to generate new ideas for further improvement while using the skills learnt in this process to address other problems. problem the project was based across three older adult’s mental health wards in east london; two continuing care wards in hackney and newham, and an acute functional mental illness ward in hackney. according to the index of multiple deprivation averages, the two boroughs are the second and third most deprived local authorities of local authorities in england. the wards included in this work are home to inpatient beds. larch lodge is a bedded admission unit for adults over years of age experiencing psychotic illness, anxiety, major depression, or personality disorders. larch lodge has an average number of admissions per year. approximately one quarter are admitted under a section of the mental health act as amended in . sally sherman ward in newham and cedar lodge in hackney are continuing care wards for patients with severe dementia which is complicated by challenging behaviour that cannot be managed in other care environments. the three wards are staffed by multi-disciplinary teams comprising mental health nurses, occupational therapists, psychologists, healthcare assistants and psychiatrists, working closely with community mental health teams and intermediate care teams. studies have noted that with a shift toward community treatment, inpatient units now house patients with greater needs.[ ] the aim of the project was to address the problem of physical violence on the wards. risk factors for violence in adults with mental illness include active psychotic symptoms, use of substances, a history of violence, and co-morbid personality disorders. in addition to these, there is also a group of older people with organic mental illness at high risk of violence.[ ] background violence on older adults’ mental health wards may relate to active symptoms or to underlying issues, including unmet needs. it affects the physical health and wellbeing of patients and staff. the negative impact on staff morale has been extensively documented, as has page of © , published by the bmj publishing group limited. for permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n q u a lity.b m j.co m / b m j q u a l im p ro v r e p o rt: first p u b lish e d a s . /b m jq u a lity.u .w o n ju n e . d o w n lo a d e d fro m http://bmjopenquality.bmj.com/ the effect on the ward environment. the national audit of violence – found a greater likelihood of assault on staff working on wards for older people with organic mental illness than in any other psychiatric in-patient site.[ ] o’callaghan et al ( ) note the results of this audit in which " % of nurses working in older people’s services had been physically assaulted on an in-patient unit, compared with % of nurses in adult services."[ ] the audit also found lack of access to physical activities. other factors noted by o’callaghan’s review were noise, lack of activity, overcrowding, inadequate staff attention, poor communication between staff and service user, conflicts between staff and carers, and weak clinical leadership. violence was associated with care tasks in an earlier study.[ ] totman et al ( ) have noted the value of increasing meaningful activities for patients and in improving the physical environment, particularly access to outdoor space.[ ] improvements to the physical environment convey a message that staff and patients are valued. staff involved in qualitative studies have also noted the importance of having their voice heard by those managing services. drawing on work by algase et al ( ) and kitwood & bredin ( ), livingston et al ( ) have said of those with dementia that "behaviours arise from need and occur when care is task-driven not person-centred."[ , , ] they go on to note that needs may include "physical discomfort or need for stimulation, emotional comfort or communication." their systematic review of interventions to address agitation found benefits for an increase in activities, music therapy, sensory interventions, and person-centred care. baseline measurement we opted to use existing processes for reporting data on incidents of violence, namely the datix system, to establish a baseline of measures. prior to starting work on the project we encouraged full use of reporting incidents, raising awareness of the importance of accurate data and addressing concerns about the potential to under- report incidents. we also collected baseline data on sickness absence on the wards, and use of restraint and rapid tranquilisation, all of which is routinely collected by the trust as part of assurance processes. the core project team analysed the baseline data to consider where best to focus the work. we used pareto charts to determine where incidents were most common. on the wards with most violent incidents we found that on average there was an incident of physical violence every three days and a staff injury due to violence every eight days. there were days of staff absence across the three wards per month at the beginning of the process. see supplementary files: ‘pareto chart’ see supplementary file: ds .pptx - “pareto chart showing incidents of violence” design local teams were established across the two sites, including a majority of frontline staff, with the support of the trust’s quality improvement team. the design of the project used the model for improvement, developed by associates in process improvement and the adopted method of the institute for healthcare improvement. project leads attended improvement science in action training to gain skills in the model. having established the multi-disciplinary teams, gained opportunities to involve patients and carers in our plans, and created a regular meeting time and date, we put together a driver diagram to reveal the relevant factors we needed to address to meet our aim. we used available data on violent incidents to set a target for reduction. we generated change ideas with the use of divergent and convergent decision-making tools. change ideas included intentional rounding (a system of proactively checking on the well- being of our patients), use of a dynamic risk assessment tool, daily access to meaningful activities, and increasing our understanding of the factors leading to specific violent incidents. strategy our motivated and enthusiastic ward staff embraced the design of the project. the strategy for implementation of change ideas was based on the pdsa cycle. we were supported to structure each set of changes via a pdsa ramp, and to use statistical process charts to track the impact of our work. the first tests, centred on one site, were on intentional rounding, which we trialled with a small group of patients in each ward. the purpose of rounding is to proactively engage with our patients and assess their well-being and state of mind, aiming to identify any outstanding issues that could lead to aggressive behaviour before it escalates. we outlined the objectives of the test using a pdsa template, including exactly how it would take place. we made predictions on what would happen. we were able to collect real- time information on the impact of these tests. we adjusted our practice according to patient feedback - when patients felt that hourly rounding was too intrusive we adjusted the plan to two hourly. we identified the need for a therapeutic space for patients at high risk of violence and introduced a sensory room. on the newham continuing care ward we began with a test on structured leave which was extended following the success of the initial trial. we initially planned structured leave with a single patient. the benefit of using a small test of change was to build in support for the practice among staff and patients by demonstrating a positive effect. we introduced a number of tests centred on the impact and acceptability of a range of new activities on the ward, including the sensory room, pet therapy, and increased activities (including exercise to music) during the week. in these tests we focused on documenting benefits to individual patients in order to adapt the available options to form an individualised care plan. the process page of © , published by the bmj publishing group limited. for permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n q u a lity.b m j.co m / b m j q u a l im p ro v r e p o rt: first p u b lish e d a s . /b m jq u a lity.u .w o n ju n e . d o w n lo a d e d fro m http://bmjopenquality.bmj.com/ helped our staff to focus attention on observing the impact of their interventions on individual patients. we ran awareness sessions for staff, patients, and carers concurrently with the other pdsa cycles in order to ensure understanding of the project and continued to meet weekly to review progress and track impact on control charts. results shortly after the team was formed, we experienced a period of increased violence on one of the wards. this may have helped to focus the team on the value of the project, but may also have been due to increased awareness about physical violence resulting from this project. it was not until march that we began to see data suggesting special cause variation, with a run of eight consecutive points above the centre-line. by november it was clear that there was a sustained impact on the main outcome measure of days between incidents of physical violence. staff injury due to violence began to reduce almost immediately after the team was formed. a downward direction of staff absence shifted the mean to days per month over the three wards by june . see supplementary file: ‘control chart’. in we conducted a financial analysis of the impact of the work. we engaged staff to model the financial implications of the work in terms of savings due to reduced staff absence, and injury. we found that a reduction in number of incidents by % led to a reduction in the cost associated with violence of %. direct costs due to physical violence reduced from £ , during the six months prior to the improvement project to £ , during the post- implementation period - a reduction of £ , in costs due to physical violence on the wards. this is balanced with the very limited costs of environmental improvements, which amounted to no more than £ . see supplementary file: ds .pptx - “outcome measure - days between incidents of physical violence on older adult mental health wards” lessons and limitations we appreciated the need for a specific, measurable, achievable and realistic aim, with clear understanding of drivers contributing to the process. we addressed a problem that was important to staff and patients alike, and the skills mix of the team allowed us to generate an effective strategy. the team was enthusiastic about testing ideas without prejudice. we had strategic support for the project and for the incorporation of improvement initiatives into our work, and the technical and methodological support of the quality improvement team. since we based our project on accessible data we then had ready access to a set of baseline measures, reducing the amount of additional data collection and allowing teams to focus on the more creative pdsa process. we were also able to demonstrate change more easily with the benefit of accessible data and relate interventions to data. we continued to be aware of areas that need ongoing work. having seen a reduction in violent incidents and injury due to violence, we have incorporated change ideas into local practice. we enabled staff to have access to improvement resources and we have involved all our staff in reporting the project back to governors, executive and non-executive directors, external stakeholders, management teams, and other clinical teams. we are continuing to trial new ideas to reduce violence. as part of this work we are taking steps to engage patients and carers more actively in the work. patients were involved most closely in the development of a therapeutic group. we are now working on spin- off projects relating to noise reduction that are co-led by a carer, and on involving patients in self-management and coping with emotional dysregulation. we have learnt that the use of improvement methods can also yield significant cost savings. conclusion the problem identified in this project was violence across inpatient older adults’ psychiatric wards housing patients with functional and organic illness. the problem was one clearly articulated in research, and was of concern strategically, and to staff and patients, with a significant negative impact on both. we used improvement methods and resources provided by ihi and east london nhs foundation trusts’ quality improvement programme and benefited from an enthusiastic, motivated, and creative team. the use of existing measures allowed the team to focus on the more creative elements of the project. following a series of interventions aimed at addressing unmet needs, making more sensitive risk assessments, providing a more therapeutic environment, and creating a suite of meaningful structured activities for our patients that were all adjusted according to pdsa testing, we were able to see a reduction in physical violence on the wards of %. days between staff injury due to physical violence rose from an average of an injury every days to an injury on average every days. the project not only resulted in a reduction in harm caused by violence, but changes in the physical environment on the ward improved staff morale. staff members involved in the project were empowered to make meaningful changes and to recognise the impact they have made. we are embedding many of the interventions we tested into daily practice and continuing to generate new ideas for testing. increased skills, knowledge, and confidence in improvement work will be carried forward to future projects. references . algase d, beck c, whall a et al. need-driven dementia- compromised behavior: an alternative view of disruptive behavior. am j alzheimers dis other demen ; : - . page of © , published by the bmj publishing group limited. for permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n q u a lity.b m j.co m / b m j q u a l im p ro v r e p o rt: first p u b lish e d a s . /b m jq u a lity.u .w o n ju n e . d o w n lo a d e d fro m http://bmjopenquality.bmj.com/ . chaplin r, mcgeorge m, hinchcliffe g, shinkwin l. aggression on psychiatric inpatient units for older adults and adults of working age. int j geriat psychiat , ( ), - . . flannery rb jr, peterson b, walker ap. precipitants of elderly psychiatric patient assaults on staff: preliminary empirical inquiry. psychiatric quarterly summer; ( ): - . . kitwood t, bredin k. towards a theory of dementia care: personhood and well-being. ageing soc ; : - . . livingston, g.; kelly, l.; lewis-holmes, e.; baio, g.; morris, s. et al. non-pharmacological interventions for agitation in dementia: systematic review of randomised controlled trials. the br j psychiat ; ( ): - . . o’callaghan c.e; richman, a.v.; majumdar, b. violence in older people with mental illness. adv psychiat treat : - . . royal college of psychiatrists’ centre for quality improvement. the healthcare commission national audit of violence – . final report – older people’s services. royal college of psychiatrists, . . totman, j, lewando hundt g, wearn e et al. factors affecting staff morale on inpatient mental health wards in england: a qualitative investigation. bmc psychiatry. ; , p. . . ware cjg, fairburn cg, hope ra a community-based study of aggressive behaviour in dementia. int j geriat psychiat : – . declaration of interests no competing interests. acknowledgements we would like to thank the staff at east london nhs trust for their contribution to this work, including peter daby, felicity bowden, leanne smith, and rosca marange. ethical approval this work met criteria for operational improvement activities exempt from ethics review. powered by tcpdf (www.tcpdf.org) page of © , published by the bmj publishing group limited. for permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n q u a lity.b m j.co m / b m j q u a l im p ro v r e p o rt: first p u b lish e d a s . /b m jq u a lity.u .w o n ju n e . d o w n lo a d e d fro m http://www.tcpdf.org http://bmjopenquality.bmj.com/ wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // 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determine the effect of toy versus live cat stimuli on the verbal communication of elderly nursing home residents with dementia. the subjects’ verbal communication was analyzed for total number of words, meaningful information units, and ini- tiations. the measurements were recorded in three conditions: without stimuli, in the presence of two toy cats, and in the presence of two live cats. six female nursing home residents with moderate dementia were ran- domly assigned into two groups to counterbalance the order of the condi- tions. the results indicated that live cats had the greatest influence on average subject performance across all three measurements. [article cop- ies available for a fee from the haworth document delivery service: kari l. greer, karen a. pustay, and tracey c. zaun are all affiliated with the min- nesota state university moorhead. patrick coppens is affiliated with plattsburgh state university of new york. address correspondence to: patrick coppens, phd, plattsburgh state university of new york, communication disorders and sciences, sibley hall, plattsburgh, ny (patrick.coppens@plattsburgh.edu). the authors wish to thank the staff of bethany homes in fargo, nd, for their help in conducting this study. particularly, the support of margaret dahl, loraine kummer, muriel danielson, and trudy dura was greatly appreciated. funding for this study was provided by a learning by doing grant from the minne- sota state colleges and universities. clinical gerontologist, vol. ( / ) http://www.haworthpressinc.com/store/product.asp?sku=j  by the haworth press, inc. all rights reserved. http://www.haworthpressinc.com/store/product.asp?sku=j - -haworth. e-mail address: <getinfo@haworthpressinc.com> website: <http://www.haworthpress.com> © by the haworth press, inc. all rights re- served.] keywords. dementia of the alzheimer’s type, pet therapy, verbal communication referring to the dangers of dementing illnesses, schwartz ( ) asserted, “the longer we live the greater the risk” (p. xi). indeed, ten percent of ameri- cans age and older are stricken with dat, and half of americans over the age of are afflicted with dementia of the alzheimer’s type (dat). approxi- mately million people currently suffer from this disease. by the year , this number is projected to increase to million (bellenir, ; churchill, safoui, mccabe, & baun, ). dat is not a normal part of the aging process (bellenir, ). it is a neuro- logical disorder that slowly advances in stages and affects cognition in terms of memory, reasoning, abstraction, and personality (churchill et al., ). this progressive deterioration of memory often negatively influences linguis- tic communication. bayles and kasniak ( ) indicated that this is a primary feature of dat. these deficits may be represented by difficulties with re- trieval and generating meaningful communication (hopper, bayles, & tomoeda, ). mccallion ( , as cited in curtright & turner, ) added that individuals with dat show limited content and concept under- standing in their conversations. intervention targeting these difficulties can be conceptually divided into in- ternal and external methods. internal methods focus on improving the cogni- tive functioning per se, whereas external methods aim at improving communi- cation mostly by manipulating the environment, such as milieu therapy (coons, ). following the external approach rationale, previous studies have considered the effects of toys on the communication of the elderly (fran- cis & baly, ; hopper et al., ). hopper et al. ( ) indicated that the presence of toys may result in a decreased need of free recall during conversa- tion. in other words, toys can serve as a shared referent for meaningful com- munication. they found that the presence of a plush animal resulted in an increase in information units for persons with dat. francis and baly ( ) found that plush animals increased the social interest and mental function of nursing home residents. in addition, plush animals produced a positive impact on self-concept and interaction and served as topics of conversation between the residents. the dat patients studied by bailey, gilbert, and herweyer clinical gerontologist http://www.haworthpress.com ( ) displayed increased alertness and social gestures along with diminished agitation when dolls and stuffed animals were present. vickery ( ) asserted that an increasing number of “long term care facili- ties incorporate animal-assisted therapy into their package of services” (p. ). animals were originally introduced into nursing homes due to evidence of ani- mal interactions lowering blood pressure, releasing strain and tension, reliev- ing loneliness and depression, and increasing life expectancy (farkas, ). they have also been used to “reach” individuals who lack interactional skills (churchill et al., ). however, the effects of animal interactions go far be- yond these findings. several studies investigated the effects of live animals on elderly individu- als (churchill et al., ; curtright & turner, ; erickson, ; fick, ; hopper et al., ; kogan, ; kongable, buckwalter, & stolley, ; kongable, stolley, and buckwalter; ; zisselman, rovner, shmuely, & ferrie, ). zisselman et al. ( ) investigated the differences between one group of elderly psychiatric patients receiving pet therapy and another receiv- ing exercise intervention. in the group receiving pet therapy, the subjects had contact with dogs and fed them. they were also encouraged to reminisce about dogs and other animals. measurement consisted of a -item scale that ob- served the patients’ self-care functioning, disoriented behavior, depressed or anxious mood, irritable behavior, and withdrawn behavior. both types of inter- vention yielded improved scores in the areas of self-care functioning, irritabil- ity, and withdrawal. kongable et al. ( ) researched the effects of a pet dog on the social be- haviors among dat patients in a veterans home. the twelve subjects were ob- served on the social behaviors of smiles, laughs, looks, leans, touches, verbalizations, name-calling, etc. the observations took place in three condi- tions (i.e., absence of the dog, temporary presence of the dog, and permanent placement of the dog) both in group and individual settings. both the tempo- rary presence and permanent placement conditions led to an increased total number of social behaviors. kongable et al. ( ) noted that pet therapy re- sults in social benefits, such as stimulation of interpersonal interactions. churchill et al. ( ) found that the presence of a therapy dog “improved socialization and decreased agitation in persons with . . . [dat] . . . during sun- down hours” (p. ). specifically, this study found that subjects produced twice as many verbal initiations when the dog was present. this study is simi- lar to batson, mccabe, baun, and wilson ( , as cited in wilson & turner, ), which showed that the presence of a therapy dog enhanced socialization behaviors of persons with dat. erickson ( ) stated that pets can serve as “social ice breakers” (p. ). animals have been shown to enhance interaction among residents, as well as greer et al. between staff and residents (cusak, ; erickson, ; fick, ; twiname, ). price ( ) stated, “when a dog is taken in, it not only sparks conver- sation between the volunteer and the patient, but also among other residents” (p. ). fick ( ) examined the verbal behaviors of nursing home residents. she found that verbal interactions between subjects doubled in the presence of a dog. according to savinsky ( , as cited in kogan, ), animals can serve as a topic of mutual interest to promote conversation. furthermore, an animal can be used to stimulate verbalization of memories (churchill et al., ). curtright and turner ( ) examined the effects of the presence of stuffed and live cats on the verbal communication of an elderly individual with dat. the authors found that average meaningful communication increased during both conditions. they concluded that the total number of utterances in both the stuffed and live cat sessions was greater than that of baseline and withdrawal sessions. live cats resulted in more meaningful communication than stuffed cats for their subject. curtright and turner indicated a need for replication of this study with a greater number of participants. kongable et al. ( ) commented that patients with dat are “at particular risk for social isolation and withdrawal because of their physiological and cog- nitive deterioration” (p. ). despite their deterioration, individuals with this debilitating condition continue to require, and more importantly, are able to engage in selected forms of socialization (kongable et al., ). these stud- ies support the hypothesis that animals have a positive influence on the verbal and non-verbal communication of persons with dat. lubinski ( ) commented that persons with dat do not tend to respond to direct treatment interventions for communication difficulties. more indirect treatments that are designed to facilitate automatic communication would be more beneficial. the purpose of this study was to examine the effects of toy and live cats on the verbal communication of individuals with dat within a group setting. the present study was designed to expand on the earlier findings of curtright and turner ( ). methodology participants six females qualified for participation in this study by meeting the follow- ing criteria: . spoke english as a first language, . had no reported history of depression, . were classified as having a moderate level of dementia based on mini mental status examination (mmse) (folstein, folstein, & mchugh, clinical gerontologist ) and the functional assessment tool for alzheimer’s-type de- mentia (fast) (reisberg, ferris, & franssen, ). the six participants were randomly assigned to one of two groups. the sub- jects’ family members and/or legal guardians were contacted by the nursing home staff for permission to participate in this study. informed consents were obtained for each participant. methods an abaca withdrawal design with counterbalancing across groups was implemented to assess verbal interactions of the participants. the subjects were placed in a family room, and their verbal communication was quantified in terms of total words, number of meaningful information units (miu), and number of initiations in the presence and absence of live and toy cats. baseline/withdrawal phases. each baseline and withdrawal phase consisted of three -minute sessions. the subjects’ verbal communication was assessed in terms of total number of words, miu, and initiations without a live or toy cat present. the participants were positioned around a card table facing each other. the examiner sat approximately two feet away from the group and operated a video camera. in addition, an audiocassette recorder was placed in the room for back-up recording purposes. the examiner remained a passive communicator throughout the interaction and only briefly responded when addressed during conversation. the exam- iner did not initiate conversation. after each session, the examiner scored the verbal communication components for each participant from the video tape re- cording (see sample recording form in appendix a). intervention phases. in one intervention phase of the study, two toy cats were placed on the table in front of the participants. this intervention phase consisted of three ten-minute sessions. number of total words, miu, and initi- ations were measured as they were in the baseline phase. the participants were again positioned around a card table with the examiner approximately two feet away. the same recording procedures were utilized. in the second intervention phase of the study, two live cats were placed on the table in front of the participants. this intervention phase consisted of three ten-minute sessions. number of total words, miu, and initiations were mea- sured as they were in the baseline phase. the participants were again posi- tioned around a card table with the examiner seated approximately two feet away. the same recording procedures were utilized. in addition, the examiner was responsible for keeping the cats within close proximity of the group. greer et al. the two intervention phases were counterbalanced between the groups to reduce the likelihood of sequencing effects. after initial baseline, group re- ceived the toy cat intervention phase. group then received the first with- drawal phase followed by the live cat intervention phase and a second withdrawal phase, yielding an abaca series. the treatment phases were re- versed for group (acaba). stimuli as previously stated, the stimuli consisted of two toy cats and two live cats. the toy cats were purchased from a local toy store prior to the study and were unfamiliar to the participants. the live cats were also unfamiliar to the partici- pants. data collection the effect of the stimuli on the participants’ verbal communication was documented by counting the total number of words, miu, and verbal initia- tions. total words were defined as the total number of words produced during each -minute session. repetitions within an utterance, unintelligible words and neologisms were not included. miu were defined as words or phrases produced by the participant that had meaning, were not redundant, and were directly related to the conversation. pronouns were not counted separately; however, specific sentence subjects, such as “farmer,” were. specific adjectives were counted separately (e.g., green, beautiful). nonspecific adjectives, such as, “very” or “really,” were not. because negatives change the meaning of a sentence, they were also counted separately. unintelligible utterances and neologisms were not in- cluded. by way of illustration, each of the following utterances contain three miu: i don’t mean to be nosey. . do mean, . not, . nosey funny jokes make me laugh. . funny, . jokes, . make me laugh initiations were defined as utterances produced without a verbal model. they were counted if they introduced new information, and were directed to- wards another person or one of the stimuli. clinical gerontologist interscorer reliability one session from each baseline, treatment and withdrawal phase was ran- domly selected for measuring reliability. an examiner who was not present for that particular session scored the verbal communication components. the number of point-to-point agreements was counted and divided by the total number of possible agreements (hopper et al., ). interscorer reliability was . for miu, . for total words, and . for initiations. results subject demographics and assessment results are listed in table . the original methodology called for ten-minute sessions; however, not all subjects remained for the entire length of every session. therefore, data were calcu- lated per minute rather than per session and are reflected as such. graphs chart- ing individual performance for each session can be found in appendix b. the pre-test baseline phase data were gathered over five sessions instead of three in an attempt to stabilize performance. however, lack of cooperation led to four baseline sessions for group and three baseline sessions for group . the re- maining treatment and withdrawal phases consisted of three sessions each for both groups. total words in the toy cat condition, average subject performance for total words gradu- ally decreased across baseline ( . /min), toy cat intervention ( . /min), and subsequent withdrawal ( . /min). when the live cats were present, average total words ( . /min) increased from baseline ( . /min), and continued to increase upon withdrawal ( . /min) (see figure ). average total words were greater during the live cat intervention than in the toy cat intervention. greer et al. table . subjects’ demographics and assessment results subject age mmse fast group df hr cm d c group aw bh ec d d analysis of individual groups showed that group reverted to baseline af- ter an increase in the presence of toy cats. this group showed a continual in- crease in the presence and withdrawal of live cats (see figure ). conversely, group showed a slight increase upon withdrawal of toy cats. these scores re- verted to baseline after an increase in the presence of live cats (see figure ). meaningful information units in the toy cat condition, average subject performance for miu was rela- tively stable during baseline ( /min), toy cat intervention ( . /min), and subse- quent withdrawal ( . /min) (see figure ). in the presence of live cats, average miu ( . /min) increased from baseline ( /min) and showed a slight decrease upon withdrawal ( . /min). overall subject performance showed greater num- ber of miu when the live cats were present. analysis of individual groups revealed that group increased production of miu in the presence of toy cats and reverted to baseline upon withdrawal. in the presence of live cats, group increased from baseline and continued to in- crease when the cats were removed (see figure ). group ’s production of miu decreased when the toy cats were introduced and increased upon with- drawal. in the live cat condition, group demonstrated an increase in miu and a decrease upon stimuli withdrawal (see figure ). initiations in the toy cat condition, average subject performance for initiations in- creased slightly (from . /min to . /min) and remained stable following with- clinical gerontologist average total words n u m b e r p e r m in u te live cats toy cats phase baseline treatment withdrawal figure . average total words across both groups drawal ( . /min) (see figure ). on the other hand, in the presence of live cats, average initiations ( . /min) increased from baseline ( . /min) and decreased during withdrawal ( . /min). average initiations were greater during the live cat intervention than in the toy cat intervention. analysis of individual groups revealed that group showed an increase from baseline in the presence of toy cats and reversed to baseline following withdrawal. group showed an increase in the presence of live cats and de- creased upon the stimuli withdrawal (see figure ). group demonstrated an increase in initiations when the toy cats were present and continued to increase upon their withdrawal. in the presence of live cats, group showed a similar performance to that of group (see figure ). greer et al. average total words–group toy cats live cats phase withdrawaltreatmentbaseline n u m b e r p e r m in u te figure . average total words for group average total words–group n u m b e r p e r m in u te phase toy cats live cats withdrawaltreatmentbaseline figure . average total words for group discussion the results indicated that live cats had the greatest influence on overall av- erage subject performance across all three measurements. closer inspection of individual group performance showed that the live cats had a stronger effect on group than on group . this is likely due to the fact that live cats were the first intervention for group and the second intervention for group . this may be due to the subjects’ progressive loss of interest as the study went on. several subjects voiced their refusal to come to or remain in the sessions dur- ing the later weeks of the study. clinical gerontologist average meaningful information units group n u m b e r p e r m in u te phase toy cats live cats baseline treatment withdrawal figure . average meaningful information units for group average meaningful information units live cats toy cats phase baseline treatment withdrawal n u m b e r p e r m in u te figure . average meaningful information units across both groups in the toy cat condition, the average performance of total words, miu, and initiations was relatively stable across phases (baseline, treatment, and with- drawal). these findings are similar to those of hopper et al. ( ), who found that the presence of toy stimuli did not influence the number of total words or verbal initiations for three of their four subjects. however, hopper et al. also found that the presence of toy stimuli resulted in a greater number of meaning- ful statements from all of their subjects. differences in the results between the greer et al. average meaningful information units group n u m b e r p e r m in u te phase toy cats live cats baseline treatment withdrawal figure . average meaningful information units for group average initiations n u m b e r p e r m in u te phase live cats toy cats withdrawaltreatmentbaseline . . . figure . average initiations across both groups two studies may be due to variations in methodology (e.g., hopper et al. al- lowed examiner initiations and one-on-one sessions). curtright and turner ( ) also studied the influence of a toy cat on the verbal communication of an elderly individual with dat. they found that the presence of a toy cat increased the number of complete information units and total number of utterances. the results of the present study are not equivalent to those of curtright and turner. the present study found that toy cats led to a slight decrease in total words and meaningful information units. this may be due to the inclusion of six subjects in the present study compared to only one subject in that of curtright and turner. in addition, curtright and turner al- lowed examiner initiation whereas the current study did not. however, inspec- clinical gerontologist average initiations–group n u m b e r p e r m in u te phase toy cats live cats withdrawaltreatmentbaseline . . . figure . average initiations for group average initiations–group n u m b e r p e r m in u te phase toy cats live cats . . . . withdrawaltreatmentbaseline figure . average initiations for group tion of individual performances in the present study showed that toy cats appear to have positively influenced cm’s production of total words and miu (see appendix b). that particular subject’s performance is comparable to the findings of curtright and turner. in the live cat condition, the average production of total words, miu, and initiations increased compared to baseline. upon withdrawal of the live cats, overall average total words continued to increase, overall average miu slightly decreased, and overall average initiations decreased to baseline levels. the findings for the initiation variable are similar to those of fick ( ), who found that the presence of a dog resulted in an increase in verbal interactions between subjects. temporary placement of live animals produces a novel situ- ation that may elicit more verbal communication. the findings for the total words and miu variables are comparable to those of curtright and turner ( ) who also studied the influence of a live cat on the verbal communication of a single elderly individual with dat. they found that the presence of a live cat increased meaningful communication as well as total number of utterances. upon analysis of individual performance in the present study, ec demonstrated the greatest benefit from the live cat interven- tion across total words and miu (see appendix b). ec and the subject exam- ined by curtright and turner were similar in mmse score with and , respectively. an interesting finding upon individual analysis was that cm and ec dem- onstrated a favorable response to the toy cats and the live cats, respectively. these two subjects had the lowest mmse scores and two of the most severe fast scores (see table ). hopper et al. ( ) found increased verbal com- munication in patients with mmse scores ranging from to in response to toy stimuli. cm, whose mmse was , showed greater verbal communication in the presence of toy cats. curtright and turner’s ( ) subject, who re- sponded more favorably to a live cat, scored a on the mmse. ec, whose mmse was , performed similarly. these results may indicate that therapy involving toy and live cats would be most effective for more severely impaired individuals with dat. this indicates they may need more external stimuli to promote conversation. future research may want to consider focusing on more severe individuals. still, this individual variability in the results point to the need for future research to focus on more precise candidacy issues for these types of therapeutic approaches. the findings of the present study demonstrate that the live cats, overall, re- sulted in greater number of total words, miu, and initiations than the toy cats. curtright and turner ( ) found that the live cat resulted in more meaning- ful communication than the toy cat, but no difference was found in the measure of total number of utterances. the results of the present study showed that the greer et al. live cats encouraged interaction between the subjects and the stimuli. that is, the subjects talked to and touched the live cats more than they did the toy cats. this is similar to the performance of the subject examined by curtright and turner. live cats initiate by approaching and touching people. it was noted that the subjects often communicated to the examiners and the stimuli. although the examiners remained passive communicators and sat apart from the group, subjects would often initiate communication with them rather than with the other subjects. the subjects also spoke directly to and touched the live cats, which is similar to that found in curtright and turner ( ). however, unlike curtright and turner, the subjects occasionally spoke to and touched the toy cats. additionally, their number of initiations was significantly greater than their number of responses, which indicates that the subjects were not talking to each other. however, the subjects initiated and responded during conversations with the examiners outside of the assessment room. their utterances tended to be appropriate, meaningful, and social. it appears that when examiners directly addressed the subjects, they tended to participate in conversation. this was not evident during the formal testing sessions, due to the subjects’ tendency not to address each other. in contradistinction, hopper et al. ( ) found that their subjects interacted more effectively. however, the more encouraging results in their study could be attributed to the use of examiner initiations in conjunction with their toy stimuli. these findings suggest that subjects may perform better when topics are initiated by a communicative partner. to examine the more so- cial aspects of communication, researchers should consider focusing their mea- surement on the quality of communicative exchanges between subjects rather than isolated measures of quantity, such as number of initiations. other characteristics may have affected the subjects’ performance. for ex- ample, ec’s harsh voice quality made her unintelligible at times and bh dem- onstrated a difficulty hearing as she frequently asked for clarification and responded inappropriately. these variables could be included within the ex- clusion criteria of future studies. furthermore, df and bh both exhibited con- fusion during sessions. a better screening for research subjects could also minimize this confounding variable. finally, subjects would lose interest and even doze off during recorded sessions. this could be prevented by a more ac- tive participation of the investigator. future research should take these factors into consideration as well as incorporating both genders and more subjects. conclusion this study proposed to look at the effects of toy cats versus live cats on the verbal communication of elderly females with dat. overall, live cats were clinical gerontologist found to have a greater influence on subject performance than toy cats, due to their active nature, which could be interpreted as communicative initiations. analysis of individual group performance showed that each group responded more favorably to their first intervention phase. observations of communica- tion outside the study, as well as findings from the literature, suggest that indi- viduals with dat may increase meaningful communication when active communicative partners are present. references bailey, j., gilbert, e., & herweyer, s. 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( ). companion animals in human health. thousand oaks: sage. zisselman, m. h., rovner, b. w., shmuely, y., & ferrie, p. ( ). a pet therapy in- tervention with geriatric psychiatry inpatients. the american journal of occupa- tional therapy, , - . clinical gerontologist a p p e n d ix a s u b je ct t w m iu i s u b je ct t w m iu i s u b je ct t w m iu i e xa m in e r t w i clinical gerontologist total words–d.f. (group ) t o ta l w o rd s p e r m in u te session a a a a a b b b a a a c c c a a a total words–h.r. (group ) t o ta l w o rd s p e r m in u te session a a a a a b b b a a a c c c a a a appendix b greer et al. total words–c.m. (group ) t o ta l w o rd s p e r m in u te t o ta l w o rd s p e r m in u te session session total words–a.w. (group ) a a a a a b b b a a a c c c a a a a a a a a c c c a a a b b b a a a clinical gerontologist total words–b.h. (group ) t o ta l w o rd s p e r m in u te session a a a a a c c c a a a b b b a a a total words–e.c. (group ) session a a a a a c c c a a a b b b a a a t o ta l w o rd s p e r m in u te appendix b (continued) greer et al. meaningful information units–d.f. (group ) m iu p e r m in u te a a a a a b b b a a a c c c a a a session m iu p e r m in u te session a a a c c c a a a b b b a a a a a meaningful information units–h.r. (group ) clinical gerontologist a a a a a a a a a a b b b b b b a a a a a a c c c c c c a a a a a a session session m iu p e r m in u te m iu p e r m in u te meaningful information units–a.w. (group ) meaningful information units–c.m. (group ) appendix b (continued) greer et al. a a a a a a a a a a c c c c c c a a a a a a b b b b b b a a a a a a session session m iu p e r m in u te m iu p e r m in u te meaningful information units–b.h. (group ) meaningful information units–e.c. (group ) clinical gerontologist a a a a a b b b a a a c c c a a a session in it ia ti o n s p e r m in u te in it ia ti o n s p e r m in u te session initiations–d.f. (group ) initiations–h.r. (group ) a a a a a b b b a a a c c c a a a appendix b (continued) greer et al. a a a a a a a a a a b b b b b b a a a c c c a a a session session c c c a a a a a a initiations–c.m. (group ) in it ia ti o n s p e r m in u te in it ia ti o n s p e r m in u te initations–a.w. (group ) clinical gerontologist initiations–b.h. (group ) in it ia ti o n s p e r m in u te in it ia ti o n s p e r m in u te a a a a a c c c a a a b b b a a a session initiations–e.c. (group ) a a a a a c c c a a a b b b a a a session appendix b (continued) a framework for understanding how activities associated with dog ownership relate to human well-being vol.:( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports a framework for understanding how activities associated with dog ownership relate to human well‑being ana maria barcelos *, niko kargas , john maltby , sophie hall & daniel s. mills there is notorious inconsistency regarding mental health benefits of dog ownership, partially due to repeated cross‑sectional studies comparing dog owners and non‑owners, without taking into account the heterogeneity of dog‑owner dyads, especially the activities with which the owners are involved. this study aimed to develop a comprehensive framework of the most important dog human related activities and their impact on owner well-being. six focus groups with dog owners were conducted, and their audio transcripts thematically analysed. dog human related activities and themes of activities were linked to their reported changes in well‑being through matrix coding. a framework of dog human related activities linked with their specific hedonic well-being, life satisfaction and eudaimonic well‑being outcomes was generated. most activities were reported to improve owner’s well‑being, (e.g. human–dog tactile interaction increases owner’s self‑esteem), and a minority was mainly associated with negative outcomes. the richness of the framework presented in this study reinforces the importance of assessing dog ownership well-being outcomes based on specific dog human related activities with which dog owners are involved. this new and systematic investigative approach should decrease inconsistencies in the field and facilitate mental health interventions and study designs of a higher level of evidence. mental health problems are one of the main disease burdens of society and are growing worldwide . in the united kingdom, mental health problems represent the largest single cause of disability, with estimated costs of £ billion a year; one in four adults in the country suffers at least one diagnosable mental health problem in any given year . psychological changes led by pet ownership may have an important impact on mental health, with associated economic savings (£ . billion/year—uk) . however, studies in this field are inconsistent, and how pet ownership might impact on human well-being has not been explored systematically. heterogeneity within important aspects of pet ownership (e.g. amount of exercise undertaken, level of disclosure of personal emotional information with their dogs) may explain why some individuals may benefit while others do not – . it is therefore not surprising that investigations on depression have shown pet ownership improves – , as well as makes no difference – and even worsens the condition , . similar contradictions extend to other aspects of well-being, such as loneliness , , stress , , anxiety , , human functioning , and life satisfaction , . the tendency to compare ‘pet owners’ versus ‘non-owners’ in cross-sectional research is a gross oversimpli- fication of a complex relationship. clearly, the specific activities owners engage with, rather than the simple act of ownership is important. % of dog owners, for example, do not walk their dogs , , and so benefits associated with increased exercise cannot be expected in this subpopulation; likewise, variations in time spent with the pet are likely to change life satisfaction and anxiety in owners . where dog-ownership related activities have been considered, the research approach has tended to be top-down (i.e. dictated by the preconceived ideas of the researcher), focusing on the impact of a few specific activities. dog walking, for example, has been extensively investigated and linked with several changes in well-being, such as increase in social interactions , – , social support , – , human functioning , , feelings of happiness , relaxation, anxiety, stress , annoyance . however, it should be recognised that owners may attribute a wider range of beneficial outcomes to these activities, and open school of life sciences, university of lincoln, lincoln, uk. school of psychology, university of lincoln, lincoln, uk. department of neuroscience, psychology and behaviour, university of leicester, leicester, uk. *email: abarcelos@lincoln.ac.uk http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf vol:.( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports/ it is only by questioning them that the breadth of potentially important activities is likely to be identified (i.e. using a bottom-up approach). there appears to be a lack of systematic consideration of the full spectrum of specific activities/events that occur due to the dog’s existence in the person’s life which may be of relevance. we define these activities as dog human related activities (dhra), also referred to simply as ’activities’ within the article (fig.  ). this definition guided the design of this study and may direct future studies in dog–human interaction. here, we propose classifying activities as either direct (occurring in the presence of the dog), such as walking the dog, petting it, the mere company of the dog; or indirect (do not require the presence of the animal), e.g. buying food for the dog, meet- ing dog friends, studying dog-related topics. direct activities are not restricted to events initiated by the owner (active activities, e.g. grooming, feeding), but also include interactions started by the pet (passive activities, e.g. jumping up, licking the owner, barking) and neutral events, in which it is not clear who initiates the interaction (neutral activities, e.g. the company/presence of the dog, sleeping next to each other, watching tv together). only with a comprehensive list of these activities, can we hope to identify the important relationships that might improve human well-being. well-being is frequently examined using a hedonic and eudaimonic perspective. hedonia is a focus on the experience of pleasant events, while eudaimonia focuses on a fulfilling life aimed at achieving one’s potential . hedonic well-being is composed of positive and negative affect but is frequently operationalised as subjective well-being (swb), a broader term comprising affect and life satisfaction . affect (or core affect) is the mani- festation of moods and emotions , and life satisfaction is the judgment of one’s own life, e.g. feeling delighted or terrible about life . in contrast, eudaimonic well-being, also referred to as psychological well-being (pwb), is typically composed of six elements or areas of functioning: ( ) autonomy, one’s independence and freedom from others’ approval, ( ) environmental mastery, one’s fit and mastery on surrounding environment, ( ) per- sonal growth, one’s self-realization and achievement of one’s potential, ( ) positive relations with others, one’s feelings of empathy and affection for others and good social relations, ( ) purpose in life, one’s meaning in life and comprehension of one’s purpose, ( ) self-acceptance, one’s positive self-regard with acceptance of past life and good and bad qualities . in this study, we used dog owner-generated data from focus group sessions to systematically identify the most important dog human related activities (both direct and indirect activities) impacting on self-perceived human well-being (hedonia, life satisfaction and eudaimonia) in order to develop a comprehensive framework, which lays the groundwork for future quantitative studies. results a framework of dog human related activities and their reported well-being outcomes in hedonia, life satisfaction and eudaimonia has been generated from the focus group sessions with an heterogenous sample of dog owners representing owners of different ages, genders, dog-related expertise, having dogs of various sizes, ages and with varying durations of dog ownership. a general overview of the framework is provided in the section below, while more details of the framework are provided in the subsequent sections in the following order: first, activities related to the four main aspects of hedonic well-being, second, activities related to life satisfaction and, third, activities related to the six elements of eudaimonic well-being. percentages provided within the results section are purely a description of the data generated and should not be used for quantitative analysis. dog human related activities and well‑being outcomes. a total of fifty-eight activities were reported as important for participants’ well-being. they were divided into themes (fig.  ). the most commonly men- tioned themes were: ‘exercise with dog’ (count: , . %), especially walking; ‘non-specific ownership, rou- tines’ ( , . %), mainly having a dog and looking after it; ‘tactile interactions’ ( , . %), notably cuddling/ snuggling with dog; ‘social interactions’ ( , . %), such as the contact with other people/dog while out with dog; ‘shared activity in the house’ ( , . %), mainly being greeted by dog; ‘shared activity outside the house’ ( , . %), especially the presence/company of the dog; and ‘teaching or learning’ ( , . %), mainly training the dog. eighteen well-being outcome themes also emerged for the framework (fig.  ). aspects of hedonia most frequently associated with dog human related activities were an increase in ‘positive valence-high arousal’ states ( mentions, . %), such as excitement, happiness, and an increase in ‘positive-valence-low arousal’ states figure  . dog human related activities classification scheme. vol.:( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports/ activities (themes and codes) hedonia eudaimonia life sat. increase in decrease in increase in decrease in increase in nvha nvla pvha pvla nvha nvla aut env per pur pos sel aut env pur pos sel ls . aging and end of life of dog ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- euthanasia, end of life - dog old dog - having it . exercise with dog ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- cycling hiking running sledging swimming walking . failing to meet dog's needs, expecta�ons ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- leave dog alone, behind not fulfil dog’s needs, e.g. walking . grooming (theme) ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- bath the dog clean dog's teeth grooming (non-specific) the result of grooming . non-specific ownership rou�nes ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- having the dog, being a dog owner look a�er the dog, rou�ne look a�er a puppy . picture-related ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- pos�ng pictures, videos of dog on social media take photos of dog . playing with dog (theme and ac�vity) . providing for the dog ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- buy snacks, treats for dog buy toys, objects to dog cook for dog feed the dog take dog to the vet . shared ac�vity in the house ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- being followed by the dog being greeted by dog dog wai�ng for owner to do something dog's presence in the house . shared ac�vity outside the house ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- dog's company at work dog's presence while outside the house pet therapy with own dog trip with dog . social interac�ons ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- contact with other people, dog while out with your dog mee�ng with other dog lovers with or without dogs talk about dog talk to dog inappropriate interac�on with your dog - from other person or dog . tac�le interac�ons - theme ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- being licked, kissed by dog cuddle, snuggle with dog pet the dog sleep, lie on bed with dog tac�le interac�ons (non- specific) . teaching or learning ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- agility learn dog-related things training, showing dog's skills . unwanted behaviours ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- aggression barking bi�ng, trying to bite, lunging chewing, destroying objects far�ng growling poo related, e.g. roll on it, eat it, defecate in the house snoring - dog stealing, e.g. food, objects . watch dog's behaviour ------------ ------------ ------------ ----------- ------------ ------------ ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- ----------- see dog in a situa�on (not described as posi�ve or nega�ve for the dog) that pleases the owner, e.g. funny noise see dog in a situa�on it dislikes see dog in a situa�on it enjoys % . % % . % % . % % . % . % % . % ≥ % figure  . heat map of all dog human related activities and their respective well-being outcomes. the darker the colour in the cell higher is the relative frequency of mentions of the activity (rows) in relation to the well-being outcome in the column. e.g. ‘looking after the dog’ (dark cell) was mentioned to increase purpose in life more times than ‘running with the dog’ (light cell). nv and pv (negative and positive valence, respectively), ha and la (high and low arousal, respectively), aut (autonomy), env (environmental mastery), per (personal growth), pur (purpose in life), pos (positive relations), sel (self-acceptance), ls (life satisfaction). vol:.( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports/ ( , . %), e.g. calmness, relaxation. for eudaimonia, ‘positive relations with others’ ( , . %), such as social interactions, and ‘purpose in life’ ( , . %) prevailed. details of all well-being outcomes and the dog human related activities reported to lead to them are given in the heat map in fig.  . the darker the cell in the map, the higher the percentage of mentions (up to ≥ %) of the relevant activity within the well-being outcome column. ‘negative valence‑high arousal’ and dog human related activities. in this aspect of hedonic well- being negative feelings such as ‘annoyed’, ‘angry’, ‘stressed’, ‘worried’, and ‘frustrated’ emerged. increase in feel- ings of this aspect were mainly occasioned by unwanted dog behaviours, such as barking; but also more benign social interactions with dog/people, especially negative encounters while out with their own dog. for example, participant : it is quite annoying when people don’t ask if a dog is friendly first, you shouldn’t just go straight and stroke the dog, you shouldn’t be touching a dog if he has an owner. also, teaching or learning dog-related things, particularly training the dog; and non-specific ownership rou- tines, such as looking after a puppy, had a negative impact on this aspect of well-being. some activities, however, were reported as protective against these negative feelings, especially shared activities with the dog outside and inside the house, simply due to the dog’s presence/company in these contexts. tactile interactions with the dog, such as cuddling and sleeping together, and exercises with the dog, notably walking, also played a key role in decreasing feelings of negative valence-high arousal. for example, participant : it is very hot in [name of the country] so i jog at night, like at midnight, so i take her with me, it makes me feel protected, it is quite nice. she gives me company, like someone is with me, so i don’t have to be afraid, it reduces my fear. ‘negative valence‑low arousal’ and dog human related activities. this aspect of hedonic well- being included states such as ‘sad’, ‘tired’, ‘unhappy’, ‘lonely’, ‘depressed’. elements of this aspect increased in dog owners mostly when they felt they failed to meet their dog’s expectations/needs, especially for leaving the dog alone/behind, and when their dogs performed an unwanted behaviour, notably the destruction of objects. for example, participant said: if it [destruction of object] is in the middle of the day it is very tiring, it is not even anger, you are exhausted. additionally, having an old dog and coping with the end of life of the animal, such as euthanasia, was associ- ated with negative feelings within this aspect. negative emotions of low arousal were nevertheless improved by tactile interactions with the dog, such as cuddling, and by sharing activities with the dog both inside the house, especially by being greeted by the animal, and outside the house, in particular, the dog’s presence/company. also, exercising together, mainly walking, was frequently reported to decrease these negative feelings. for example participant , explained: it was difficult at times to walk him, but i was determined, me and him. for me, walking is on the higher top of my list, it helped in my recovery [from depression] ‘positive valence‑high arousal’ and dog human related activities. this includes states such as ‘happiness’, ‘joy’, ‘fun’, ‘excitement’, ‘activation’. owners reported improvements in feelings of this aspect from exercising with their dogs, especially walking; from watching their dog, mainly when the dog is happy in a situ- ation; and from teaching the dog, such as training exercises. for example, participant : it makes me happy to see how happy she [the dog] is, how excited she is. positive feelings of high arousal also arose from tactile interactions with the dog, such as cuddling and lying next to each other, playing with the dog, e.g. tug and ball games; and shared activities inside the house, notably being greeted by the dog. no activity was identified to directly decrease this element of well-being. ‘positive valence‑low arousal’ and dog human related activities. in this aspect of well-being, feel- ings of calmness, relaxation, peace, and love emerged. they reported growth in feelings of ‘positive valence-low arousal’ when they were involved in tactile interactions with their dogs, such as cuddling, sleeping together and lying next to each other. for example, participant : snuggling with the dog, on the sofa or on the bed, they just come up and flop on you, you can just relax and forget how busy it is and things like that, it is really calming. additionally, exercising with the dog, mainly walking, and sharing activities in the house, notably being greeted by the dog, were also associated with increases in feelings of this aspect. no activity was reported to directly decrease this element of well-being. the results relating to dog human related activities effects on the valence-arousal (hedonic well-being) are summarised in fig.  . vol.:( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports/ ‘life satisfaction’ and dog human related activities. there were not many mentions of life satisfac- tion as an outcome of dog human related activities. the few mentions that did occur tended to be related to exercising with the dog, such as walking, running and cycling, dog ownership per se, general routine with the dog and taking the animal to animal-assisted interventions. for example, participant : he [the dog] was life changing, he improved my life and the life of my family, he has a positive impact on the whole family. ‘autonomy’ and dog human related activities. in this element of eudaimonic well-being, ‘non-spe- cific ownership routines’, such as being a dog owner and being able to look after an animal were frequently men- tioned by owners as activities that make them feel more autonomous. for example, participant : as a pet parent i do feel protective of him and i have that sense that i can go out and take care of him, so i feel independent. increases in this element were also associated with shared activities with the dog (outside and inside the house), especially having the dog’s presence/company; and with exercises with the dog, such as walking, run- ning, hiking. in contrast, owners’ autonomy decreased when they struggled to leave their dog behind/alone. for example, participant : sometimes dogs restrict that [autonomy, independence], you don’t always have the opportunity to take dogs somewhere, we have a family in [another country far away] and to go and travel there means you have to leave the dog somewhere, and sometimes there is no place to leave the dog. figure  . model of impact on affect (valence and arousal) for all themes of dog human related activities. each coloured quadrant contains themes of activities that increase an aspect of affect, while white areas contain themes that were reported to cause reduction of that aspect of affect. the spatial position of items within quadrants is not related to any difference in intensity. themes in bold: had a high frequency of mentions in the well-being element reported ( % or more). black: moderate frequency of the mentions ( . – . %). grey: low frequency of the mentions ( . – . %). vol:.( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports/ ‘environmental mastery’ and dog human related activities. in this element, owners reported their ability to fit or cope with their surrounding environment, including the performance of tasks relating to daily liv- ing. improvements in environmental mastery were associated with dog ownership and looking after the animal on a regular basis, which is part of the theme ‘non-specific ownership routines’. also, performing exercises with the dog, mainly walking, and providing for the animal, particularly feeding it, were reported to increase the sense of environmental mastery of owners. for example, participant : it [feeding the dog] gives me something to do, otherwise i would skip a few meals. they have their own din- ner, they have their own routines so i need to keep my routines as well. they have routine in the morning, it is good, it reminds me of doing things. one of the dogs has tablets, so it reminds me of my tablets as well. however, owners also mentioned that having an old dog and giving support to this old animal hindered their own environmental mastery. for example, participant : the negative side of dog ownership is when they get old, you need to adjust your life to help your dog, […] you need to adjust loads of your routine. ‘personal growth’ and dog human related activities. personal growth was reported as a sense of self- achievement in particular aspects of the owner’s life (or life as a whole). the activities that mainly contributed to this element of well-being were being a dog owner and being capable of looking after a dog. also, teaching and learning were associated with personal growth, especially learning dog-related things, such as dog behaviour and dog travel regulations, and training the dog successfully, e.g. to perform a new skill. for example, participant : he is the first dog i have had as an adult so i had to learn something about dog behaviour, how to look after them, about visas, how to get a [nationality of dog] dog into this country, that helped my personal growth. no activity was reported to decrease this element of well-being. ‘purpose in life’ and dog human related activities. having a dog, looking after the animal and having a routine because of the dogs’ needs were associated with improvements in their purpose in life. additionally, exercising with the dog, primarily through walks, increased this element as well, as did some non-specific activi- ties; for example participant : because i got a dog i got quite a good routine now. i need to make sure she walks, she is fed, all the needs are met, so that gives me purpose in life. some activities, however, decreased or hindered owners’ sense of purpose in life, such as the responsibilities linked to dog ownership and not being able to leave the dog behind/alone. for example, participant : if i didn’t have my dogs i would travel more and be more free, i would do more things, it is more negative to purpose in life, not autonomy, because i think in a big picture. ‘positive relation with others’ and dog human related activities. dog owners reported changes in their social relations and empathy for others. increases were attributed to having more interactions with other people, especially when out with the dog, and explicitly meeting other dog lovers on purpose. exercising with the dog, particularly walking, and being accompanied by the dog while outside the house improved owners’ rela- tions with others as well. for example, participant : when you go out for a walk you meet different people, it seems okay to talk to them because you have a dog, the dog is an introducer. if you are just walking by yourself it is different, the dog is the connector. several owners also said that simply having a dog was beneficial to their social relations. in contrast, contact with others was also detrimental to their social relations, especially when having disruptive encounters, such as inappropriate interactions from others towards their dogs. unwanted behaviours, particularly those related to aggression, such as when their dogs bark, bite or lunge towards others, were also detrimental to their social relations. for example, participant : sometimes it is annoying meeting other people. yesterday, for example, there was a guy sitting with three dogs, and then a woman approached and tried to pet them, then all dogs started barking, and the guy was trying to calm the three dogs. sometimes i think ‘please don’t interact with my dogs, just leave me’ ‘self‑acceptance’ and dog human related activities. self-acceptance included owners’ self-esteem and acceptance of their good and bad qualities. this element improved through the simple fact of having a dog and being able to look after the animal successfully, as well as due to activities shared with the dog in the house, particularly being greeted by the dog. for example, participant : being licked, being cuddled, greeted [by dog] helps with self-esteem and self-acceptance because you can feel that you are loved, like when you feel sad, they pick up that and they try to cheer you up, it helps you accept who you are. vol.:( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports/ tactile interactions with the dog, such as cuddling and being licked/kissed by the dog, and teaching or learn- ing dog related things, such as dog training and learning about dog behaviour, had a beneficial impact on this element as well. by contrast, owners’ self-acceptance was hindered by dog’s unwanted behaviours, especially due to the feeling of not being able to control their animal’s behaviour, such as when the dog was acting aggressively or getting a recall when it was needed. for example, participant : on training she is great but on public she won’t come back to me when i call her, then suddenly she starts to bark to someone with no reason, and i can’t control her, it makes me feel completely useless. training the dog and looking after a puppy also decreased owner’s self-esteem, particularly due to the frustra- tion they felt for not being able to train a specific skill or manage their puppy. these results relating to the themes of dog human related activities associated with eudaimonic well-being are summarised in fig.  . discussion the recurrent inconsistencies observed across studies investigating dog ownership and human well-being, with- out taking into consideration the individuality of each dog–human relationship, drove the use of a new inves- tigative approach in this study. a framework based on the full spectrum of activities/events dog owners could be involved with, due to the existence of a dog in their lives (defined by us as dog human related activities – see introduction) was created. the use of the activities (or themes of activities) of our framework in future investiga- tive studies is likely to increase consistency across studies, as patterns of well-being outcomes are expected to be observed for each particular identified activity. we believe this is the first systematic attempt to identify the most important specific dog human related activities that have an impact on the perceived well-being of owners. the framework is comprised of dog human related activities and themes of activities, which emerged as the most important dog human related events to dog owners’ hedonic well-being, life satisfaction and eudaimonic well-being. importantly we considered not only positive but also negative impacts, since the balance between these may be critical in the final well-being outcome. as might be expected, the majority of dog human related activities were associated with positive well-being outcomes but three important groups of activities had a predominantly negative impact on owners’ well-being: ( ) aging and end of dog’s life, such as euthanasia, ( ) failure to meet dog’s needs/expectations, such as leaving the dog alone at home, and ( ) unwanted behaviours, such as problematic tendencies and poor obedience. the richness of the framework revealed in this study reinforces the problem with oversimplified dichotic comparisons figure  . all themes of dog human related activities reported to impact on eudaimonic well-being. themes in bold: high frequency of the mentions in the element of well-being reported ( % or more). black: moderate frequency of the mentions ( . – . %). grey: low frequency of the mentions ( . – . %). a green ‘thumbs-up’ indicates that the activity is beneficial to the referred well-being, while a red ‘thumbs-down’ shows the activity hinders that well-being. a few activities can be both beneficial and detrimental depending on the specific context of the interaction. vol:.( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports/ based purely on ownership or not frequently observed in studies of the “pet effect” , . our data support the need for better mapping of activity to outcome: for example, being greeted by a dog, physical interactions with the animal and dog training, were repeatedly referred to as boosters for owner’s self-acceptance, by contrast walking the dog had a stronger impact on owner’s social interactions, autonomy and purpose in life. it should also be noted that having to leave the dog alone at home, which may be related to owner work status, or looking after an old dog was related to important negative feelings of low arousal, such as sadness, and to decrease in autonomy or environmental mastery. in contrast, the occurrence of unwanted behaviours and obedience issues were predominantly linked with negative feelings of high arousal, such as anger, and worsening on positive rela- tion with others and self-acceptance. it is not surprising that the most frequently reported activities to impact on well-being in this study, have also been reported to be important in previous investigations. physical interactions with dogs, for example, have been shown to decrease stress – , anxiety – and fear , and increase feelings of positive valence . being greeted by the dog is suggested to provide comfort and positive feelings for owners . dog walking often catalyses owners’ social interactions , , improves owner’s emotional state and gives them purpose in life . in contrast, unwanted behaviours may hinder owners’ social interactions and generate feelings of negative valence . the loss of a pet and the care of an old animal have also been linked to negative feelings of low arousal, such as sadness and depression, as has a sense of failure to fulfil the dog’s expectations, e.g. when owners fail to walk them or leave them alone at home. however, our study extends this list and systematically integrates this more comprehensive inventory of activities into a coherent framework for the first time (figs.  , and ). changes in affect (hedonia) were mainly reported to be caused by specific events, such as playing, training, being greeted by the dog, while changes in eudaimonic well-being (eudaimonia) were mainly linked to more general events, such as being a dog owner and looking after the dog. this difference is not surprising since hedonia (represented by affect) amounts to the pursuit of pleasure through the experience of discrete life events, responsible for changes in feelings , ; by contrast, eudaimonia, represents a lifestyle, (“eudaimonic living”) , in which intrinsic values and long-enduring outputs are aimed for , making eudaimonia more stable over time than hedonic well-being , . thus, it seems likely that either a set of activities or a high intensity/frequency/duration of activities is required to yield transformations in eudaimonia, rather than the experience of a single event. for example, walking a dog once a year may suffice to increase one’s momentary happiness and be identified as an activity that improves this affect. however, this same event may not be enough to change the meaning or quality of one’s life (aspects of eudaimonia). changes in life satisfaction, one of the components of subjective well-being, was not linked to dog human related activities by the majority of participants. this might be a product of the study design, which required participants to focus on the four most important dog human related activities for their affect and/or life satisfac- tion in the same exercise. this might have encouraged them to focus more on specific events and thus subjec- tive feelings. another possible limitation is the lack of males in the sample, even though an effort was made to increase their representation in the selection phase. women are believed to have higher psychological openness than men , , thus, future studies may need to minimise the disclosure of information about the nature of the research to recruit more men. nonetheless, the activities and changes in well-being reported by male participants in the focus group sessions were not noticeably different to those reported by their female counterparts, and sessions were continued until redundancy of the information provided by all participants was achieved, but this does not negate the possibility of a selection bias limiting the information provided. to increase the consistency across future studies, we recommend the selection of individual activities provided in our framework or combinations of them to test associations with the potential well-being outcomes as identi- fied here. for example, testing if a higher frequency (or duration) of tactile interactions with dogs is positively associated with self-esteem. however, if our list of activities does not mirror a specific targeted population (e.g. dog owners with physical disability; dog owners who live on farms), new specific activities (or themes) could be added to the existing framework to make it even more comprehensive or a new framework specific for this group could be created based on the specific dog human related activities of interest. by assessing individual activities, rather than dog ownership per se (or even dog-assisted intervention per se), future investigations are likely to identify patterns of increase or decrease in particular well-being outcomes in relation to specific activi- ties, especially if representative sampling of their targeted population and control for potential mediators (e.g. demographics, closeness to pet) are applied. thus, it might be evidenced that dog ownership per se is not the key to change elements of well-being but dog-related activities. future studies by the authors will quantitatively assess the relationship between dog human related activities and changes in well-being identified here, through a survey, as a prelude to more comprehensive investigations of causality. it should also be noted that there may be cultural differences, particularly between countries, and so these results should not be thought to be globally comprehensive. likewise, the relationship with other pets could be explored, since the activities reported are likely to differ from one species to another. even though our framework has a good representability of dog owners (different ages, genders, dog-related expertise, dog sizes, dog ages and dog ownership duration) and saturation of themes has been reached in our thematic analysis, the framework cannot encompass all possible activities existent in all dog-owner dyads. more activities are expected to be found in studies targeting specific types of dog owners, i.e. those who have a particular goal associated with their relationship, such as a form of work or a specific hobby or interest. any new activities might be rare at a general population level and/or not likely to change the well-being of dog owners at a population level. for example, even though some owners might be happy while dressing their dogs with different clothes and that might be a very important activity in their lives, this activity is not likely to have a strong effect on the well-being at a population level but could still be added into our framework to make it even more complete. the creation of a definition for dog human related activities and the framework of activities and their well- being outcomes provided in this qualitative study provides a more robust basis for future research in the field vol.:( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports/ examining the mental health of dog owners (or even in the field of dog-assisted interventions), which should help to resolve current inconsistencies. this new, more specific approach opens the door to the investigation of changes in human well-being which acknowledges the individuality of each dog-owner dyad. this framework also provides the foundation for the development of more robust study designs and treatment plans for patients with mental health issues, which might be helped by dog-assisted interventions or dog owners simply hoping to improve their mental health. methods participants. initially, convenience and voluntary samplings were used to recruit self-identified dog owners via the university of lincoln’s petscando database (volunteer owners), social media, in person leaflet distribution and leaflets placed at pet shops, food markets and buildings of the university. dog owners filled a recruitment form to volunteer to the study. some of them were selected through purpose sampling to generate greater sample diversity with regards to owners’ age, gender, dog-related expertise or not (e.g. dog trainer, veterinarian of small animals, volunteer in dog-assisted interventions), size of their dogs, age of their dogs and duration of the dog ownership. diagnosable mental health problems were not directly investigated in the study (e.g. as a selection criterium), owners with and without diagnosable mental health conditions were welcome to participate and, during the focus group, they were free to disclose as much or as little of their mental health status as they wanted. the population was thus mental health stigma-free, and accordingly honest and unbiased by such issues. based on the registrations, a total of participants were selected. ten of them were not included as they either did not attend or arrived too late for the focus group meeting. the dog owners who comprised the final sample, were aged from –  years to –  years old (median –  years), were female ( . %), owners had some dog-related expertise ( . %), eight owners had small dogs ( %), medium dogs ( %), large dogs ( %), their dogs’ age ranged from a few months old to up to more than  years old (median –  years old) and dog ownership lasted from a few months to more than  years (median –  years). finally, allocation to one focus group or another was performed according to participants’ time availability. pilot study and focus group sessions. focus groups consist of an organised discussion with a selected group of people to gather information on a topic , and are recommended for exploratory research , such as to the development of theoretical frameworks , justifying their use in this work. this study was approved by the ethical review committee at the university of lincoln (reference -jul- ), and all methods were carried out in accordance with the university research ethics policy and with the bps code of ethics and conduct. writ- ten informed consent was obtained from all participants. a pilot session, with four volunteers, was conducted to assess the quality of the moderator guide and time management before the main focus groups. all focus groups took place at the university of lincoln, uk and were focused on dog human related activities and their impact on well-being. they were moderated by the first author, who had been trained in focus group moderation and supported by an assistant. two audio devices were used simultaneously for recording: homder digital audio recorder and iphone (apple). in line with guest et al. , which reports that % of themes in focus groups are usually discovered within three to six sessions, a total of six sessions (besides the pilot) were performed in this study, and saturation of themes was achieved. each of the participants could take part in one session only. group sizes ranged from four to eight dog owners, and session duration varied from –  min (mean  min). based on a pre-defined semi-structured moderator guide, dog owners were first introduced to the concepts of dog human related activities, hedonic well-being, life satisfaction and eudaimonic well-being in a similar way they have been defined in the introduction of this paper but with simpler words (e.g. instead of using the word affect in hedonic well-being, the moderator referred to it as emotions and moods) and through a powerpoint presentation aimed to facilitate the comprehension of the concepts. examples of dog human related activities during this explanation were minimal so as not to influence owners’ replies in the next step. second, owners were asked about the four most important activities for their own subjective well-being (positive and negative affect plus life satisfaction), and the four most crucial activities linked to their eudai- monic well-being. in order to prevent inter-participant bias and to generate a greater diversity of activities, dog owners were initially instructed to individually write these activities on a piece of paper provided. participants were free to write more than one well-being outcome for each activity and it was made clear that they could also write less than four dog human related activities for each aspect of well-being if they wished. when asked about activities important to their life satisfaction and hedonic well-being, life satisfaction itself or any aspect of affect (e.g. happiness, sadness, calm) was a potential outcome. no predetermined fixed-options of affect was used to help participants characterise freely, with any word, the nature of the affect they experience from each activity reported, as recommended by scherer . in contrast, when participants wrote the activities essential for their eudaimonic well-being, they were asked to use the theory of the six elements of this well-being (e.g. autonomy, self-acceptance) as a guide for their reply, as these elements are part of the core concept of eudaimonic well-being. third, once all owners had finished writing, they shared out loud their list of dog human related activities and provided some background to justify their connection with the well-being outcome mentioned. at this point, dog owners had the opportunity to interact with each other, for example, discussing and elaborating on each other’s points. several new dog human related activities emerged from that discussion and participants had the opportunity to agree or disagree with each other’s perceptions, which was important to evidence both positive and negative well-being outcomes of the same activity. in that discussion, probes and prompts were used by the moderator to clarify and gather further information from participants. transcription and data analysis. word-for-word transcription of the audio records and data analysis were performed on microsoft word and nvivo , respectively. thematic analysis of the transcripts was con- vol:.( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports/ ducted in three steps. first, dog owner related activities and elements of hedonic well-being, life satisfaction and eudaimonic well-being were coded. second, activity codes were grouped according to their similarity in order to generate themes, e.g. ‘hiking’ and ‘running’ with the dog were grouped within the theme ‘exercise’. affect elements were grouped based on the dimensional models presented by russel , scherer and yik et al. , and eudaimonic elements were grouped according to ryff ’s classification. for example, the feelings ‘calm’ and ‘relaxed’ were grouped together as a hedonic aspect of positive valence-low arousal. at this stage, the final codes and themes were decided following discussion and consensus reached among the authors. third, activities and themes were linked with their well-being outcomes through matrix coding (cross-tabulation of the frequency of references to each component). for example, the number of times the theme ‘tactile interactions’ was mentioned as beneficial to self-esteem (eudaimonic well-being) was calculated, as well as all other themes in relation to this well-being outcome. in order to have a better view of this cross-tabulation, a heat map was created (fig.  ). data availability data used for analysis are included in the supplementary information. received: february ; accepted: june references . 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( ). . yik, m., russell, j. a. & steiger, j. h. a -point circumplex structure of core affect. emotion , . https ://doi.org/ . /a ( ). acknowledgements this study was funded by the pearl activity grant scheme  – . the authors thank all dog owners who took part in the study, simon lunt for his assistance through the focus group sessions and phil assheton for his support in the construction of a figure. https://doi.org/ . / . . https://doi.org/ . / . . https://doi.org/ . /geront/gnw https://doi.org/ . /jpah. . . https://doi.org/ . /ijerph https://doi.org/ . /ijerph https://doi.org/ . /annurev.psych. . . https://doi.org/ . /emo https://doi.org/ . /rspb. . https://doi.org/ . / - x. . . https://doi.org/ . / - x. . . https://doi.org/ . /j. - . . .x https://doi.org/ . /j. - . . .x https://doi.org/ . /j.ctcp. . . https://doi.org/ . / . . https://doi.org/ . / - - https://doi.org/ . / - - https://doi.org/ . / x https://doi.org/ . / x https://doi.org/ . / https://doi.org/ . / - - https://doi.org/ . /mehc. . . https://doi.org/ . / https://doi.org/ . / https://doi.org/ . / https://doi.org/ . / https://doi.org/ . / x https://doi.org/ . /s - - - https://doi.org/ . / - - - - _ https://doi.org/ . / https://doi.org/ . / https://doi.org/ . / . . https://doi.org/ . / . . https://doi.org/ . / x https://doi.org/ . / https://doi.org/ . / https://doi.org/ . / - x. . . https://doi.org/ . / - x. . . https://doi.org/ . /a https://doi.org/ . /a vol:.( ) scientific reports | ( ) : | https://doi.org/ . /s - - - www.nature.com/scientificreports/ author contributions a.m.b. designed the study, collected and analysed the data, and wrote the manuscript. n.k. contributed to the study design, data analysis and writing of the manuscript. j.m. designed the study, contributed to the data analysis and wrote the manuscript. s.h. contributed to the design of the study, data analysis and writing of the manuscript. d.m. designed the study, analysed the data and wrote the manuscript. competing interests the authors declare no competing interests. additional information supplementary information is available for this paper at https ://doi.org/ . /s - - - . correspondence and requests for materials should be addressed to a.m.b. reprints and permissions information is available at www.nature.com/reprints. publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. open access this article is licensed under a creative commons attribution . international license, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. the images or other third party material in this article are included in the article’s creative commons license, unless indicated otherwise in a credit line to the material. if material is not included in the article’s creative commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. to view a copy of this license, visit http://creat iveco mmons .org/licen ses/by/ . /. © the author(s) https://doi.org/ . /s - - - www.nature.com/reprints http://creativecommons.org/licenses/by/ . / 	a framework for understanding how activities associated with dog ownership relate to human well-being 	anchor 	anchor 	results 	dog human related activities and well-being outcomes. 	‘negative valence-high arousal’ and dog human related activities. 	‘negative valence-low arousal’ and dog human related activities. 	‘positive valence-high arousal’ and dog human related activities. 	‘positive valence-low arousal’ and dog human related activities. 	‘life satisfaction’ and dog human related activities. 	‘autonomy’ and dog human related activities. 	‘environmental mastery’ and dog human related activities. 	‘personal growth’ and dog human related activities. 	‘purpose in life’ and dog human related activities. 	‘positive relation with others’ and dog human related activities. 	‘self-acceptance’ and dog human related activities. 	discussion 	methods 	participants. 	pilot study and focus group sessions. 	transcription and data analysis. 	references 	acknowledgements wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ does owning a pet protect older people against loneliness? pikhartova et al. bmc geriatrics , : http://www.biomedcentral.com/ - / / research article open access does owning a pet protect older people against loneliness? jitka pikhartova *, ann bowling and christina victor abstract background: pet ownership is thought to make a positive contribution to health, health behaviours and the general well-being of older people. more specifically pet ownership is often proposed as a solution to the problem of loneliness in later life and specific ‘pet based’ interventions have been developed to combat loneliness. however the evidence to support this relationship is slim and it is assumed that pet ownership is a protection against loneliness rather than a response to loneliness. the aim of this paper is to examine the association between pet ownership and loneliness by exploring if pet ownership is a response to, or protection against, loneliness using waves – from the english longitudinal study of ageing (elsa). methods: using data from , men and women in the english longitudinal study of ageing, cross-sectional and longitudinal regression analysis was used to assess the bi-directional relationship between loneliness and pet ownership among adults aged + . results: in (wave ) % of participants were pet owners compared with % in (wave ). the association between pet ownership and loneliness is stronger in women than men, and in both directions (i.e. pet ownership predicting loneliness and loneliness predicting pet ownership) and of the similar magnitude (or . - . ). age, social relationships, demographic factors and health behaviour variables have only a minimal influence upon the association between loneliness and pet ownership. the results of our longitudinal analysis showed that women who reported being lonely always in waves to were more likely to have a pet in wave . conclusion: reported loneliness is dependent on socio-demographic characteristics such as gender, household income, household living arrangements and health status. taking those factors into account, owning a pet significantly influences later reporting of loneliness in women in our longitudinal analysis. in the reverse direction, reported loneliness influences pet ownership in later waves. in both directions, the relatively strong gender interaction suggests the association is limited to women with effects for men minimal or non-existent. keywords: loneliness, elsa, pet ownership, longitudinal study, old people background loneliness in later life, its prevalence and risk factors, has long been a focus of research. according to cognitive discrepancy theory, loneliness is defined as an unwanted discrepancy between desired and achieved levels of social contact [ ]. in north america, australasia and western europe research has consistently reported the prevalence of severe loneliness of approximately % for those aged years and older with a further % classified as * correspondence: jitka.pikhartova@brunel.ac.uk department of clinical sciences, college of health and life sciences, brunel university london, uxbridge, middlesex ub ph, uk full list of author information is available at the end of the article © pikhartova et al.; licensee biomed cen creative commons attribution license (http:/ distribution, and reproduction in any medium domain dedication waiver (http://creativecom article, unless otherwise stated. moderately lonely whilst countries in central and eastern europe report prevalence rates of severe loneliness of between % and % [ ]. loneliness has been shown to be associated with a range of negative health outcomes and health behaviours (which vary between different age groups) [ , ]. previous research has identified a range of risk factors for the onset of loneliness which also vary somewhat across age groups. predictors of loneliness in younger ages have been summarized by mahon et al [ ]. a much wider range of risk factors have been identified for older adults including gender [ ], being widowed or divorced [ ], reporting poorer self-rated health than expected [ , ], tral ltd. this is an open access article distributed under the terms of the /creativecommons.org/licenses/by/ . ), which permits unrestricted use, , provided the original work is properly credited. the creative commons public mons.org/publicdomain/zero/ . /) applies to the data made available in this mailto:jitka.pikhartova@brunel.ac.uk http://creativecommons.org/licenses/by/ . http://creativecommons.org/publicdomain/zero/ . / pikhartova et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / sensory impairments [ ], disability/impaired mobility [ ], poverty and low material resources [ ], time spent alone and household composition [ ]. living arrangements, social resources and social participation have been identified as potential mediators between health status and loneliness [ ]. in terms of health outcomes loneliness has been linked with cardiovascular disease [ , ], depression [ ] and alzheimer disease [ ], and has been proposed as a mortality accelerator [ - ]. according to review published by holt-lundstad et al. [ ] the mortality excess associated with weak social relationships is similar to other established risk factors such as low physical activity, smoking or drinking. loneliness is, therefore, an important public health issue, and it is thus important to identify factors which can protect against or reduce vulnerability to loneliness as a means of developing appropriate interventions. some of the established risk factors have been used in interventions to reduce loneli- ness. since at least five reviews and meta-analyses to evaluate the evidence for the effectiveness of interventions to reduce loneliness have been published. four focussed on older adults (the reviews by cattan, et al. [ ], findlay [ ], choi et al. [ ] and hagan et al. [ ]) whilst masi et al. [ ] included adults of all ages. these reviews showed that only a limited number of interventions demonstrated any significant impact upon levels of loneliness [ ]. a number of interventions attempting to prevent or reduce loneliness have used ‘pet therapy’ based upon the attachment theory of bowlby which emphasized the human need to be attached to somebody, to be close, to form and maintain relationships and the need for a sense of belonging [ ]. such interventions also build on work by lazarrus and folkman [ ] indicating that human-pet attachment could provide a unique and affordable source of social support [ ]. in the uk it is estimated that there are approximately million pets and % of british households own a pet (pet food manufacturers association; www.pfma.org.uk/pet-population/; accessed december ). the uk ranks second in europe for dog ownership, and third for cat ownership [ ]. it is claimed that people who own pets do so to improve their subjective well-being, for company and to feel loved, depended upon and wanted [ ]. the evidence base to support the use of such pet-based interventions is weak. there are a number of studies focusing on pet ownership or on animal assisted therapy (aat) for older adults, for adults with serious mental health problems [ ], cardiovascular events [ , , ], or living in care-homes [ ] which demonstrate positive outcomes [ - ]. several studies have explored how, and to what extent, feeling of loneliness and social exclusion can be remediated (or prevented) by pet ownership [ - ] based on the premise that this reduces the impact of stressors in everyday live and consequently symptoms of depression or anxiety [ - ]. it is also hypothesised that pets may substitute for missing attachment figure(s). however, those who are highly attached to their pet report higher levels of loneliness compared to those who do not have such close relationship with their pet [ ]. the evidence for the beneficial impact of pet ownership on loneliness is inconsistent as some studies show no impact of pet-ownership on health status or on mortality [ ]. furthermore most studies looking at this relationship are cross sectional in design. there is lack of evidence from longitudinal and intervention studies of using animals to reduce loneliness and social isolation among older people [ ] although some effective interventions have been identified [ ]. longitudinal studies examining the relationship between pet-ownership or frequent con- tact with animals, and health, well-being or loneliness are rare. raina et al. [ ], focusing on the relationship between pet ownership and the physical and mental health of older people, reported that those who owned a pet were more active at the end of the study period than non-pet-owners, and that pet ownership significantly modified the relationship between social support and change in mental health. [ ] guest et al. reported that hearing dogs had a big impact on reducing loneliness among hearing-impaired owners but they did not use any control group [ ]. given that the evidence is mixed and extremely limited, the effectiveness of the presence of home pets on the prevention of loneliness and social isolation and improve- ment of subjective well-being has been questioned [ - ]. furthermore rather than pet ownership mediating against loneliness, it has been proposed that the true nature of the relationship is, in fact, reversed i.e. pet ownership is a response to loneliness. however there are few longitu- dinal studies assessing the relationship between loneliness and pet ownership in both directions (pet ownership as a response to loneliness or pet ownership as a protection against loneliness). [ ] the aim of this paper is to contribute to the evidence examining the relationship between pet ownership and loneliness. we examine if pet ownership is a response to, or protection against, loneliness using the english longitudinal study of ageing (elsa) by considering four questions: question : can pet ownership protect against future loneliness? question : is current pet ownership a response to previous feelings of loneliness? question : how do different pathways of loneliness influence current pet ownership? question : what role do socio-demographic characteristics, known to be connected with loneliness, play in the association between pet ownership and loneliness? http://www.pfma.org.uk/pet-population/ pikhartova et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / the answers to these questions will extend the evidence about the potential long-term effects of the presence of domestic animals in the lives of older people on the feelings of loneliness and vice versa. methods data the analysis was performed on a subsample of publicly available data from the english longitudinal study of ageing (elsa). the elsa dataset is based on the health survey for england (hse) and is designed as a representative sample of the population aged + years of age living in the community in england. those aged + who participated in the hse in , and (referred to as wave ) were invited to participate in the wave of elsa in . the study has collected data every two years since with biological samples taken every years. participants gave full informed written consent to participate in the study and ethical approval was obtained from the london multicentre research ethics committee. more details about elsa can be found at http://www.ifs.org.uk/elsa/documentation.php. the two possible directions of the association between loneliness and pet ownership (as a protection against or response to loneliness and current pet ownership as a response to previous feelings of loneliness) are explored using two analytical samples. questions about pet owner- ship were included in part of wave and in wave while questions related to loneliness were first included in wave and have been presented in all subsequent waves. to answer question (does pet ownership protect against loneliness), we consider the relationship between pet-ownership in wave and loneliness reported in following waves (waves to ). for this analysis a subset of , individuals present in the part of wave that included pet ownership questions (only of the years of hse data that formed the original sample for elsa) and subsequent elsa waves is used. to answer question (is pet ownership a response to loneliness), we consider reported pet ownership in wave (the only other elsa wave including pet ownership questions) and loneliness reported in waves – using both cross-sectional and longitudinal analysis. the cross- sectional analysis is based on data from wave (as it is the only wave with data both on loneliness and pet ownership). longitudinal analysis will assess the rela- tionship between loneliness reported in waves to and pet ownership in the wave . both these analyses (longitudinal and cross-sectional) will be conducted using a subsample of , core study members who took part in all waves with valid data related to loneli- ness and pet ownership. when we adjust our analysis for pet ownership in wave the sample size reduces to , . the answer to the question is investigated by creat- ing loneliness pathways between waves to and using this as an independent variable and pet ownership as the dependent variable. the role of socio-demographic risk factors for loneliness (question ) will be answered by developing multivariable models as part of our analysis of questions – . variables loneliness in the english longitudinal study of ageing loneliness is measured by the short form of the revised university of california, los angeles (ucla) loneliness scale in waves to . this instrument is a well-documented and widely used [ ] and consists of three questions “how often do you feel you lack companionship”, “how often do you feel left out” and “how often do you feel isolated from others?” responses are recorded on a -point likert scale ranging from hardly ever/never, some of the time and often, resulting in a theoretical range of – , with a higher score indicating greater loneliness. score were dichoto- mised with those scoring – (three bottom quartiles) classified as “not lonely” and those with scores – (upper quartile) as “lonely” [ ]. we used the short form ucla loneliness scale in preference to a single-item loneliness measure (one question from ces-d questionnaire “have you felt lonely much of the time during the past week?” with answers yes/no) because of concerns about the reli- ability of this measure with older people [ ] as they may mask feelings of loneliness as consequence of its stigmatization [ ] but also because the question is focused on loneliness in the last week which can be misleading and a potential source of under- or over-reporting. pet ownership pet ownership in both wave and was measured using responses to the question “do you keep any household pets inside your house/flat?” followed by questions asking whether they had a dog, cat, bird, other furry pet and other pet. covariates gender, age, marital status [ , ], the presence of close personal relationships (social networks), social participa- tion, working status, social position, household income, and health status were used as covariates in the analysis. marital status was dichotomised into those never married/ divorced/separated/widowed (not living with partner) and those living with partner (married/remarried/cohabiting). information about social networks (family and friends) was available in all waves except wave . a summary score was created to indicate whether the respondent had a close relationship with at least one of the following: spouse/partner, close family member or children and had http://www.ifs.org.uk/elsa/documentation.php pikhartova et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / at least one friend based upon responses to the following questions: about the number of family members and friends with whom respondent had contact, about the proximity of respondent’s marital relationship; and whether the positive support from the spouse, children, other relatives and friends was or was not present. social participation was constructed as summary score from information about membership of any club, society, and church group or being an active member of neighbourhood community. working status was derived from responses to questions about whether participants were (self-)employed, retired or did not work. for social status the short version of ns-sec category classification was used managerial/ professional, intermediate and routine/manual. household income was used categorised into quintiles [ ]. health related variables were also included in the ana- lysis. a measure of immobility was constructed from difficulty in walking more than yards (wave ) and difficulty walking more than ¼ of mile (other waves) [ ]. sensory impairment in wave , derived variables about vision and hearing problems, were collected as binary measure with options “has condition” and “no condition”. in waves and the answers to questions about impairments were on -point likert scale, and dichotomised to be comparable with wave . self-rated health was classified using -point likert score scale, dichotomised as good and poor health and used from the same waves as information about pet-ownership (waves and ). statistical methods frequency tables were constructed to describe the distri- bution of categorical variables in the individual waves of elsa used in our analysis and mean age calculated for men and women for individual study waves. the logistic regression analysis has three steps following our research questions. first, the role of pet ownership in wave (and in wave for cross-sectional analysis) as possible risk factor for loneliness in waves to has been evaluated. a binary measure of loneliness was used as the dependent variable and pet ownership together with further covariates used as independent variables. second, to consider pet ownership is a response to previous feel- ings of loneliness, we assessed if reported loneliness in waves to affects pet ownership in wave . pet owner- ship was used as dependent variable and loneliness categorised as a binary variable the independent measure. for both questions cross sectional analysis using data from wave was followed by prospective analysis in which the dependent variable was from later wave than independent variables. thus for question we looked at pet ownership in wave and loneliness at wave , wave , wave and wave (four separate prospective analyses). for question three prospective and one cross-sectional analyses were conducted (loneliness in wave , wave , wave , and wave and pet ownership in wave ). the number of prospective analyses was determined by the availability of data related to pet ownership and our measure of loneliness. in step the role of loneliness in future pet ownership was further assessed using pathways of loneliness. pet ownership in wave was the dependent variable and loneliness pathway the independent variable. our loneliness pathway was constructed as a combination of dichotomised ucla loneliness variables in waves , , and , and a five-fold typology created: “always lonely”, “never lonely”, “pathway into loneliness”, “pathway out of loneliness” and “fluctuating pathway”. in all three steps of our analysis, crude unadjusted odds ratio (or) and % confidence interval ( % ci) were estimated, and this was followed by adjusted multivariable analysis to answer question . variables were tested as possible effect modifiers. results are presented separately for men and women due to significant or borderline non-significant effect modification by sex. missing data for the self-completed ucla loneliness scale part of questionnaire ranged from . % in wave and . % in wave and was % for pet ownership questions. as the proportion of missing data was low we did not use imputation to increase analytical sample size [ ]. statistical analyses were carried out using stata version mp . results characteristics of the sample our analytical sample of , individuals was slightly younger in the first two waves than the main elsa sample ( . years in wave compared with . for the main sample) but had higher mean age in later waves than the whole sample because the main dataset was boosted by new participants in consecutive waves. the gender distribution of the whole sample and analyt- ical subsample is similar across all waves ( % of males and % of females) as is marital status ( . % of our sample was married/living with partner while it was . % in the whole elsa sample). the proportion of widowed participants increased and proportion of married, remarried and those living with partner decreased by about % over years of the study. the proportion of employed and not employed changed substantially and differs by nearly % between wave and wave which reflects the withdrawal of participants from the labour market. a small percentage, %, of the sample had no children; % who had children reported a close relationship with them. approximately one third of participants did not have spouse or partner with % of those who did reporting that they had a close relationship with them. approximately . % of participants did not have immediate family, and pikhartova et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / among those who had immediate family, approximately % did not have any close contact with them. between and % respondents did not have any friends and those who had them, % reported they do not have close relationship with them a little over one-third, %, of elsa participants owned pet while it was % in our sample. the rates of loneliness (as measured by the ucla loneliness scale) increased very slightly from % to . % over years. gender differences were stable over all the waves and rates of reported loneliness were about % higher in women compared with men (table ). question : pet ownership and later loneliness does pet ownership protect against loneliness? in our cross-sectional analysis, those who reported pet- ownership in wave were . times more likely to report loneliness at the same time (see table ). in the prospective analysis those who reported pet-ownership in wave were . to . more likely to report loneliness in later waves. when the analysis was stratified by gender, as this is an effect modifier, having a pet increased reported loneliness . - . times in females (table ) after adjustment for all co-variates (age, marital status, working status, social class, health status, social inclusion, close personal relationships, and household income). this association was statistically significant for all analyses for women. the gender interaction was statistically sig- nificant, however, only in cross-sectional analysis when loneliness and pet-ownership were both measured wave and in one prospective analysis (wave to wave ). although non-significant, the gender difference in the association between pet ownership and reported loneli- ness is very consistent (significant association in women and no association in men). we hypothesise that the non- significant interaction is a consequence of the smaller sample size in prospective analysis based upon reported pet ownership in wave , where the number of partici- pants is small compared to the other waves. our analysis suggests that having a pet increased the likelihood of reporting loneliness among females in all adjusted analyses. question : loneliness and later pet ownership is current pet ownership a response to previous feelings of loneliness? in wave the odds of owning a pet were % higher for those who were lonely as compared to those who were not. this result is mainly accounted for by women who were lonely for whom the odds of owning a pet were almost % higher than their non-lonely counterparts (or . to . ). stratifying by pet ownership in wave , the magnitude of the effect of loneliness on pet ownership in wave is larger among women who had pet at wave than among women who did not (for example, or . and . for the relationship between loneliness at wave and pet ownership at wave ; not shown in the tables) but none of these interactions were significant. therefore the relationship between loneliness and pet ownership in wave was adjusted for the pet ownership in wave (table , “adjusted ”). although the sex-specific effects are different (and of similar magnitude as “adjusted ”) the gender interactions are no longer statistically signifi- cant (except cross-sectional analysis) perhaps reflecting the reduced size of our analytical sample due to the limited availability of pet ownership data in wave . question : loneliness pathways and later pet ownership how do different pathways of loneliness influence current pet ownership? our final analysis evaluated how different pathways of loneliness affect pet ownership in wave . the results are presented separately for men and women and are similar to previous analysis: no differences in the odds of pet ownership between different groups of men but significant between women who reported loneliness on all occasions or who moved out of loneliness and those who never reported loneliness. those who always reported loneliness or moved out of loneliness were more likely to have pet in wave and these patterns were consistent when adjusted for pet ownership at wave . those who were persistently lonely were . times more likely to have a pet in wave than those who never reported loneliness whilst those who moved out of loneliness were . times more likely to have a pet than the non-lonely reference group (table ). discussion levels of reported loneliness in elsa are approximately % and these are roughly stable over time. women reported loneliness more frequently than men (a differential of around %), and this difference is also approximately stable over time and supports previous studies using the revised ucla scale [ ] but no other studies using other scales to measure loneliness which reports higher rates of loneliness for men [ ]. loneliness in elsa is reported more frequently in comparison with european data from the share study conducted across a range of european countries (more information on http://www.share-project. org/). the reported rates of loneliness in share in european countries (measured by the same instrument as in elsa study and in comparable years) are somewhat lower oscillating between % (in denmark or switzerland), % in france and % in hungary [ ] compared with % for elsa. these differences in the prevalence of lone- liness across europe support the hypothesis that loneliness is culturally defined and is associated with expectations. for example the prevalence of loneliness in greece is http://www.share-project.org/ http://www.share-project.org/ table descriptive characteristics of study sample wave ( ) wave ( ) wave ( ) all men women all men women all men women total n , , , , , , , , mean age . . . . . . . . . pet ownership yes (%) . % . % . na na na . % . % . % ownership of house pet: dog (%) . % . % . % na na na . % . % . % cat (%) . % . % . % na na na . % . % . % bird (%) . % . % . % na na na . % . % . % other furry pet (%) . % . % . % na na na . % . % . % other pet (%) . % . % . % na na na . % . % . % loneliness yes (%) na na na . % . % . % . % . % . % marital status single/divorced/separated/widowed (%) . % . % . % . % . % . % . % . % . % parenthood yes na na na . % . % . % . % . % . % social participation yes na na na . % . % . % . % . % . % close personal relationships yes na na na . % . % . % . % . % . % working status working (%) . % . % . % . % . % . % . % . % . % social class managerial/professional . % . % . % . % . % . % . % . % . % intermediate . % . % . % . % . % . % . % . % . % routine/manual . % . % . % . % . % . % . % . % . % household income q (low) na na na . . . . . . q na na na . . . . . . q na na na . . . . . . q na na na . . . . . . q (high) na na na . . . . . . self-rated health , poor . % . % . % . % . % . % . % . % . % long standing illness yes – limiting . % . % . % . % . % . % . % . % . % immobility some difficulty/much difficulty/unable to do test . % . % . % . % . % . % . % . % . % pikhartova et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / table descriptive characteristics of study sample (continued) hearing difficulties yes . % . % . % . % . % . % . % . % . % seeing difficulties yes . % . % . . % . % . % . % . % . % some individuals owned more than one pet. in wave and in waves + different categorization. binary variables; we show % of only one category. pikhartova et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / traditionally reported as one of the highest in the europe but only about % of older people live alone and about % reported that they had close daily contacts with family members or friends [ , ]. the goal of our study was to assess the relationship between loneliness and having a pet. in particular we wanted to explore the direction of the association and answer the question whether pet ownership is a protection against or response to loneliness? having a pet was reported by % of respondents at baseline (wave ) and by nearly % in wave and more than one pet by % and % of respondents respectively. we do not know why pet ownership decreased but it seems plausible that this may reflect reduced income resulting from retirement; deteriorating health resulting in pet care being too demanding and the death of pets. we demonstrate that those who reported that they had a pet at the beginning of the study were . - . more likely to report loneliness compared to those who did not. this overall association masks a significant gender effect being confined to women but not men. looking at the relationship the other way around and focusing upon loneliness as a predictor of pet ownership we see a similar association of a similar magnitude. in pooled table the association between pet ownership (in wave a and % ci) cross-sectional pet ownership in wave wave -wave ( – ) n , , all no (ref) (ref) yes . ( . - . ) . ( . - . ) men no (ref) (ref) yes . ( . - . ) . ( . - . ) women no (ref) (ref) yes . ( . - . ) . ( . - . ) p sex interaction . . adjusted for gender (in pooled analysis), age, marital status, working status, social class, analysis those who reported loneliness were . - . times more likely to have a pet at follow up. again the gender interaction was significant in all analyses dem- onstrating that the association between loneliness and pet ownership is confined to women. our pathway ana- lysis demonstrated that women who always reported being lonely and those who moved out of loneliness were more likely to report pet ownership than their non-lonely contemporaries (odds ratios of . and . respectively). these results mean, perhaps, that pet owner- ship can be a response to loneliness for the always lonely and a protection for those who recovered from loneliness. gender is the key factor in our analysis. our results suggest that the association between pet ownership and loneliness is particularly strong in women. age, social, demographic and health behaviours variables including established risk factors for loneliness (such as age or marital status) do not substantially affect the magnitude or direction of the association between loneliness and pet ownership. there are, of course, some limitations to our study. loss to follow-up of individuals between the waves of elsa data collection might have introduced selection bias. recent articles using elsa data suggest that nd wave ) and odds of loneliness (in waves to ) (or loneliness prospective analysis wave -wave ( – ) wave -wave ( – ) wave -wave ( – ) , , , (ref) (ref) (ref) . ( . - . ) . ( . - . ) . ( . - . ) (ref) (ref) (ref) . ( . - . ) . ( . - . ) . ( . - . ) (ref) (ref) (ref) . ( . - . ) . ( . - . ) . ( . - . ) . . . health status, social participation, close personal relationships, household income. table the association between reported loneliness (waves to ) and odds of pet ownership (wave ) (or and % ci) pet ownership cross-sectional prospective analysis loneliness wave wave to wave ( – ) wave to wave ( – ) wave to wave ( – ) n , , , , adjusted all no (ref) (ref) (ref) (ref) yes . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) men no (ref) (ref) (ref) (ref) yes . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) women no (ref) (ref) (ref) (ref) yes . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) p sex interaction . . . < . adjusted all no (ref) (ref) (ref) (ref) yes . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) men no (ref) (ref) (ref) (ref) yes . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) women no (ref) (ref) (ref) (ref) yes . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) p sex interaction . . . . adjusted = for gender(in pooled analysis), age, marital status, working status, social class, health status, social participation, close personal relationships, household income. adjusted = additionally adjusted for pet ownership in wave , n = , . table pathways of loneliness and pet ownership in wave (or and % ci) loneliness pathway sample (n) sample (n) men women adjusted- sample adjusted- sample adjusted- sample adjusted- sample never lonely , , (ref) (ref) (ref) (ref) always lonely . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) into loneliness . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) out of loneliness . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) fluctuating . ( . - . ) . ( . - . ) . ( . - . ) . ( . - . ) adjusted = for gender (in pooled analysis), for gender (in pooled analysis), age, marital status, working status, social class, health status, social participation, close personal relationships, household income. adjusted = additionally adjusted for pet ownership in wave = sample . those, who have information on pet ownership in wave . pikhartova et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / pikhartova et al. bmc geriatrics , : page of http://www.biomedcentral.com/ - / / sample attrition is, for example, greater among those who were in a disadvantaged socioeconomic position at the start of the study but any bias due to attrition might be only small [ ]. there was a relatively small subsample of participants, who were asked about pet ownership in wave of elsa. we do not have information about how long participants had owned a pet or whether they looked after somebody else’s pet. we also do not have sufficient consecutive information to determine the rela- tion between the initial reporting of loneliness, possible acquisition of a pet and the subsequent loneliness status to see the whole sequence of events to explore reverse causality in full detail. we could not adjust for seasonality and although loneliness is higher in spring and winter [ , ] we do not think that this would significantly alter our results. finally, as we performed relatively large number of hypothesis tests, we focused more on the magnitude of the effects when interpreting the results rather than just purely focusing on significance of findings. conclusions it is commonly assumed that pet ownership ‘protects’ older people against loneliness. our analysis has demonstrated that, for women, this may be a plausible hypothesis as it is associated with recovery from loneliness. however we have also demonstrated that for women who are always lonely pet ownership may be a response to their loneli- ness. our results contribute to research on loneliness by demonstrating the complexity of the link between pet ownership and loneliness-it can be both a response to loneliness and a potential pathway out of loneliness. we also demonstrate that these relationships are only demon- strated by women and are not moderated by established loneliness risk factors or confounders. these results suggest a number of areas for future research and have implications for policy and practice. there is considerable scope for qualitative research exam- ining the issue of pet ownership in later life in more detail and how older people see this as a response or pathway out of loneliness. there is a clear need for such research to explore the important gender dimension identified in our analysis. quantitative studies can demonstrate a link between gender, loneliness and pet ownership but we need to conduct qualitative research to explore the factors that account for these relationships. in addition these results caution us as to the appropriateness of pet based therapies and interventions against loneliness. we may speculate that, based on our findings, that such interventions may be more appropriate and acceptable to women than men. again we need further research to explore the nature of the relationships between gender, loneliness and pet ownership in order to develop interventions that are appropriate, acceptable and effective. abbreviations elsa: english longitudinal study of ageing; aat: animal assisted therapy; ucla: university of california, los angeles; share: the survey of health, ageing and retirement in europe; or: odds ratio; ci: confidence interval. competing interests the authors declare that they have no competing interests. authors’ contributions jp was responsible for developing the research idea, the data preparation and performing the statistical analysis. ab and cv have participated in the design and broadening the idea, and all authors participated in the preparation of the manuscript. all authors read and approved the final manuscript. acknowledgment the research was funded by esrc grant reference es/k / as part of the secondary data analysis initiative. the authors thank elsa participants and researchers; and esds for enabling use of elsa data for this analysis. author details department of clinical sciences, college of health and life sciences, brunel university london, uxbridge, middlesex ub ph, uk. university of southampton, faculty of health sciences, southampton so bj, uk. received: may accepted: september published: september references . peplau la, perlman d: perspectives on loneliness. in loneliness; a sourcebook of current theory, research and therapy. edited by peplau la, perlman d. new york: a willey-interscience publication; : – . . fokkema t, de jong gierveld j, dykstra pa: cross-national differences in older adult loneliness. j psychol , : – . . stanley ih, conwell y, bowen c, van orden ka: pet ownership may attenuate loneliness among older adult primary care patients who live alone. aging 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empirical test. soc sci med , : – . . borys s, perlman d: genders differences in loneliness. pers soc psychol bull , : – . . victor c, scambler sj, shah s, cook dg, harris t, rink e, de wilde s: has loneliness amongst older people increased? an investigation into variations between cohorts. ageing soc , : – . . demakakos p, marmot m, steptoe a: socioeconomic position and the incidence of type diabetes: the elsa study. eur j epidemiol , : – . . wenz fv: seasonal suicide attempts and forms of loneliness. psychological reports , : – . . zhong cb, leonardelli gj: cold and lonely: does social exclusion literally feel cold? psychol sci , : – . doi: . / - - - cite this article as: pikhartova et al.: does owning a pet protect older people against loneliness? bmc geriatrics : . 	abstract 	background 	methods 	results 	conclusion 	background 	methods 	data 	variables 	loneliness 	pet ownership 	covariates 	statistical methods 	results 	characteristics of the sample 	question : pet ownership and later loneliness 	does pet ownership protect against loneliness? 	question : loneliness and later pet ownership 	is current pet ownership a response to previous feelings of loneliness? 	question : loneliness pathways and later pet ownership 	how do different pathways of loneliness influence current pet ownership? 	discussion 	conclusions 	abbreviations 	competing interests 	authors’ contributions 	acknowledgment 	author details 	references << /ascii encodepages false /allowtransparency false /autopositionepsfiles true /autorotatepages /pagebypage /binding /left /calgrayprofile (dot gain %) /calrgbprofile (srgb iec - . ) /calcmykprofile (u.s. web coated \ swop\ v ) /srgbprofile (srgb iec - . ) /cannotembedfontpolicy /error /compatibilitylevel . /compressobjects /tags /compresspages true /convertimagestoindexed true /passthroughjpegimages true /createjobticket false /defaultrenderingintent /default /detectblends true /detectcurves . /colorconversionstrategy /leavecolorunchanged 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/destinationprofileselector /na /downsample bitimages true /flattenerpreset << /presetselector /mediumresolution >> /formelements false /generatestructure true /includebookmarks false /includehyperlinks false /includeinteractive false /includelayers false /includeprofiles true /multimediahandling /useobjectsettings /namespace [ (adobe) (creativesuite) ( . ) ] /pdfxoutputintentprofileselector /na /preserveediting true /untaggedcmykhandling /leaveuntagged /untaggedrgbhandling /leaveuntagged /usedocumentbleed false >> ] >> setdistillerparams << /hwresolution [ ] /pagesize [ . . ] >> setpagedevice the relationship of fathers with sons who have tourette syndrome and the impact on the family by calvert f. cazier a dissertation submitted to the faculty of the university of utah in partial fulfillment of the requirements for the degree of doctor of philosophy department of health promotion and education the university of utah august copyright © calvert f. cazier all rights reserved t h e u n i v e r s i t y o f u t a h g r a d u a t e s c h o o l statement of dissertation approval the dissertation of calvert f. cazier has been approved by the following supervisory committee members: glenn e. richardson , chair / / date approved sue morrow , member / / date approved patrick panos , member / / date approved richard ferre , member / / date approved julia franklin summerhays , member / / date approved and by les chatelain , chair of the department of health promotion and education and by charles a. wight, dean of the graduate school. abstract tourette syndrome (ts) is a misunderstood complex, chronic, neuropsychiatric disorder known for both involuntary muscle and vocal tics which manifests itself in childhood and usually has a lifelong duration. little research has been done on how families are impacted by having a child with (ts) and even less has been done on how fathers in particular are affected. dealing with a child who has ts can be stressful to the parents as well as to the dynamics of and the family. while children with ts have many obvious challenges, their families face similar problems which may not be so readily apparent. this study used qualitative research methods to study the relationships of fathers and their sons with ts. qualitative research is useful for examining aspects of social life that are not easily accessed through quantitative data collection techniques. the overarching finding which emerged in this study was that the fathers experienced a waxing and waning pattern of response in the face of an uncertain future which seemed to be influenced by the intrinsic nature of ts. they reported experiences along a continuum of success, ranging from effective responses which seemed to lead to personal growth and resilience and stronger relationships with their sons and families, to ineffective responses, difficulty developing personally, and relationship strain or deterioration. the waxing and waning pattern of responses occurred along five major iv themes: ) the question of normalcy, ) pride in son, ) hope in the future, ) acceptance, and ) role satisfaction. each father had his own unique challenges to his son with ts which impacted his relationships with this son, his other children, and his wife. as a whole these fathers appeared to find effective ways over time to develop strong family relationships. factors which seemed to propel these fathers forward included a clear understanding of and commitment to their roles as a father and husband and the successful development of a strong husband and wife team. table of contents abstract ................................................................................................................. iii list of figures ..................................................................................................... vii acknowledgements ......................................................................................... viii chapters . introduction and review of literature ....................................... introduction to the problem ................................................................................... overview of tourette syndrome ........................................................................... family systems theory and resiliency ................................................................. purpose of the study .............................................................................................. research questions ................................................................................................ rationale for qualitative methods ......................................................................... data analysis ......................................................................................................... explanation of reporting format .......................................................................... appendix a: interview question guide ................................................................ references .............................................................................................................. . the relationship of fathers with sons who have tourette syndrome and the impact on the family ................. abstract .................................................................................................................. introduction ............................................................................................................ purpose ................................................................................................................... literature review................................................................................................... methods.................................................................................................................. results .................................................................................................................... discussion .............................................................................................................. appendix a: selection criteria .............................................................................. appendix b: interview question guide ................................................................ references .............................................................................................................. vi . application of the metatheory of resilience and resiliency in families with children with tourette syndrome: waves one and two.................................................................................................... abstract ................................................................................................................ introduction .......................................................................................................... purpose ................................................................................................................. overview of ts-related disruptive challenges .................................................. the first wave of resiliency inquiry: resilient qualities .................................. the second wave of resiliency inquiry: resiliency ........................................... discussion ............................................................................................................ references .............................................................................................................. . application of the metatheory of resilience and resiliency in families with children with tourette syndrome: wave three ................................................................................................................... abstract .................................................................................................................. introduction ............................................................................................................ the first and second waves of resiliency inquiry ............................................... the third wave of resiliency inquiry .................................................................. integrating resilient qualities, resiliency, and resilience ................................... discussion .............................................................................................................. references .............................................................................................................. . conclusion ...................................................................................................... review of findings ................................................................................................ suggestions for future research ........................................................................... references .............................................................................................................. list of figures figure page . richardson’s resiliency mapping model .............................................. . father’s waxing and waning responses ......................................................... . richardson’s resiliency mapping model .............................................. . ts resiliency mapping model: description of a family’s journey: single tic ........................................................................................................ . ts resiliency mapping model: description of a family’s journey: multiple tics ................................................................................................... . ts adapted resiliency mapping model: accounting for secondary challenges ...................................................................................................... acknowledgements there have been many supporters in the course of this project. some, like my first wife, carol sorensen cazier, and my mother, lois call cazier, are no longer with me but had such a tremendous impact on me that i would be remiss not to acknowledge their influence. carol supported me through my undergraduate and master’s degrees and a year career in public health. my mother believed in me when others discouraged me from going to college, and she gave me the hope and determination to accomplish what i so desperately wanted. i have been blessed with a father who, when my tourette syndrome first manifested itself while i was in second grade, was able to love me, accept me, teach me, guide me, help me believe in myself, and most importantly be patient with me. he believed my tourettic tics were a nervous disorder, and at first he asked me to stop a few times, and then he ignored them and encouraged me to live my life to the fullest. it wasn’t until i was years old that my mom and dad learned that i had tourette syndrome. the members of my committee were exceptional, principled, encouraging, and willing to share their time and energy to help me complete this task. to dr. glenn richardson, my committee chair, i express my appreciation for his encouragement to think outside the box and his guidance and advice when i really needed his expertise. his ix influence and friendship have impacted me for more than years. i respect dr. sue morrow as one of the best qualitative researchers in the university system, and her participation was such a blessing and welcome confidence builder for me. she graciously shared her expertise by providing input no one else could have provided. dr. patrick panos first influenced me with his non-traditional approach in a research design class i took from him. his honest and open feedback has always been very helpful. dr. rich ferre shared his expertise as a child and adolescent psychiatrist and published author on tourette syndrome. he did so much to help me understand more about the difficulties that families with children with ts face and about myself as an adult with ts as well. dr. julia summerhays always made me feel welcome to knock on her office door and seek advice about problems or bounce ideas off her. she also stepped up and provided important help and guidance at a time when it was especially needed. i appreciate the time and effort given to me by my peer reviewers carol romagosa and lester keller. their ability to read the raw data and offer suggestions was an integral part of completing this dissertation. i would be very remiss if i forgot the most supportive and influential person responsible for me reaching my goal of a phd, anne evans-cazier, my wife, confidante, and best friend. anne spent many hours with me conducting interviews of the fathers and even more hours editing this dissertation. anne is an exceptional editor and without her help i could not have accomplished this task. she was always available to help me and as a result she sacrificed her time, including time when she could and should have been working on her own business. she was my rock and i love her and appreciate her for everything she did. chapter introduction and review of the literature introduction to the problem “…some days i really want to give up…i suffer from depression…i don’t handle it well…ts is hereditary…then i get angry at my bloodline.” reflections of a mother with a child with tourette syndrome (ts) delange and olivier, , p. tourette syndrome (ts) is a misunderstood complex, chronic, neuropsychiatric disorder known for both involuntary muscle and vocal tics (abelson et al., ) which manifests itself in childhood and usually has a lifelong duration (kurlan et al., ; wilkinson, ). it is recognized as a developmental disorder involving structural abnormalities in the brain with genetic and environmental factors interacting in its expression (leckman, vaccarino, kalanithi & rothenberger, ; stillman et al., ). ts is considered the most severe as well as most common of the continuum of disorders with tics as their common feature (kenney, kuo & jimenez-shahed, ; raffaele et al., ). tic disorders can range from a mild transient tic (unrelated to ts and lasting less than months) to the more blatant, debilitating tics found in ts (hendren, ; singer, ). the tics associated with ts last longer than months and may impact the child (or adult) in many ways, including social, family, and academic. according to leckman ( ) the degree to which the child with ts is impaired by his tics can depend on such factors as their frequency, intensity, number, and complexity along with any comorbidity the child may have. while motor and vocal tics are obvious symptoms of ts, coprolalia is perhaps the most recognizable as well as distressing of all the symptoms experienced by those with ts (blacher, downloaded / / ; shapiro, ; singer, ). coprolalia is a tic in which uncontrollable obscene words or loud, unintelligible sounds come out of the individual’s mouth. this condition is somewhat rare and found in approximately % of those with ts (singer). since de la tourette first described this condition in (medlineplus, ), tics have been considered the hallmark of ts and the most visible symptom of this disorder (jankovic, ; leckman, ). a tic is a sudden, repetitive movement, gesture, or utterance that typically mimics some fragment of normal behavior. tics are brief in duration and often occur in periodic bouts, with a frequency that may range from minimal occurrences only during times of anxiety or fatigue to uncountable bursts occurring as more than times per minute (hendren, ; shavitt, hounie, campos, & miguel ). very little research has been done on how families are impacted by having a child with tourette syndrome (ts) and even less has been done on how fathers in particular are affected (wilkinson et al. ; woods, himle, & osmon, ). in the limited studies that have been conducted, parents of children with ts frequently report frustration, show a poor parent-child relationship and have marital difficulties (wilkinson et al.; woods et al.). ylvén, björck-Åkesson and granlund ( ) found that families with children who have a variety of disabilities and chronic illnesses face daily stressors that can influence family functioning in negative ways. although ts was not included in this study, it seems likely that families with children with ts face many similar challenges and outcomes. people with ts report more problems than others with personal and social functioning, such as aggressiveness, mood swings, temper tantrums, and friendship and dating relationship struggles (champion, fulton, shady, ), executive function difficulties (jankovic, kwak & frankoff, ), being teased, ridiculed, embarrassed (bruun, cohen, & leckman, ) and bullied (chowdhury, ). it is not unusual for children with ts to come home from school or other activities devastated and demoralized and defeated because they do not know how to deal with the teasing, bullying, and harassment they experience (chowdhury; hbo documentary, ). their self-esteem often suffers as they try to deal with social pressures from the outside as well as tics and other internal experiences such as difficulty focusing their attention, controlling their impulsivity, etc. by the time they come home they are frequently exhausted from trying to cope with internal as well as external forces that go beyond the normal developmental challenges (carter et al., ). these challenges can provide an opportunity for personal growth and development but they can also lead to frustration, a miserable social life, academic problems and much heartache (hendren, ; woods & marcks, ). dealing with a child who has ts can be stressful (wilkinson et al., ) and greatly impact the parents as well as the dynamics of the family as a whole (schapiro, ; singer, ; woods et al., ). while children with ts have many obvious http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstract&term=% champion+lm% % bauthor% d http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstract&term=% champion+lm% % bauthor% d challenges, their families face similarly challenging problems which may not be so readily apparent (rosen ). one particularly significant factor identified by rosen ( ) is how well parents are able to accept things over which they have no control. can they accept, for example, the social, emotional, and physical stresses that may result from having a child with ts? can they deal with the stigmas, impulsivity, obsessions, and learning disabilities associated with their child’s tourette's and comorbidities? can they help their family accept, cope, function, and live with all the other challenges that may arise as a result of having a child with ts as a family member? dickstein ( ) emphasizes that a family is a complex system and that healthy interactions between the members are important to the optimal development of each member. little is known about how fathers interact with their children with ts, whether they interact with their children with ts differently than how they interact with their other children, or, if they do, how this affects the family as a whole. overview of tourette syndrome nearly years ago georges albert eduard gilles de la tourette, a french neurologist, published his ground breaking paper study of a nervous affliction (delange & olivier, ) in which he reported on nine patients who all had child-onset tics. during the course of his research he noticed that this group manifested other common symptoms as well. these other symptoms included uncontrollable noises and inappropriate and often times vulgar and insensitive utterances. in addition many of these patients had problems which today are being diagnosed as adhd, ocd, and poor impulse control along with other coexisting problems of a behavioral nature (jankovic, ; tourette syndrome fact sheet: national institute of neurological disorders and stroke, national institutes of health.) background history of ts while de la tourette defined this condition he did not know its precise etiology. he believed it to be hereditary, but for nearly a century thereafter the etiology of ts was attributed to psychogenic causes (baylor college of medicine, patient education; jankovic, ; robertson, ) and it was treated with psychoanalysis until the late s, even early s. in his proposal of a hereditary foundation, de la tourette claimed that it was a degenerative problem that the patients inherited due to a nervous system caused by the immoral behavior of their parents, grandparents, etc. (kushner, ). today medicine recognizes de la tourette’s contribution of describing the symptoms and the course of illness, but refutes his attribution of it being a degenerative problem with a progressive deteriorating outcome (kushner, ). ts is now recognized as a developmental disorder involving structural abnormalities in the brain with genetic and environmental factors interacting in its expression (leckman et al. ; stillman et al., ). during the s dr. arthur shapiro, md and his wife dr. elaine shapiro, phd. began pioneering research on the effect of using haloperidol (haldol) to control tourettic tics in a year old woman (shapiro & shapiro, ).when this patient was first examined by a doctor at age she had many tics and was described as an emotional child; later her doctors diagnosed her with “habit tic[s] with hysterical background” (shapiro & shapiro, p. ). several years later when dr. arthur shapiro examined this same woman, he diagnosed her with ts and started her on a treatment regimen using pharmaceuticals. over the course of several months he treated her with various drugs and combinations of drugs in order to find something that would help her (shapiro & shapiro). finally she was given haloperidol and responded favorably. this was a major breakthrough and led shapiro and shapiro to conclude that ts has an organic pathology in refutation of the prevailing belief that ts was psychological in origin. in the , and publications of the diagnostic and statistical manuals of the american psychiatric association defined the clinical phenomenology of ts as simple and straight forward (robertson, ) but current research has shown that it is far from simple. robertson explains that there are now no doubts about ts having a genetic component but its pattern of inheritance is not clear. leckman, vaccarina, kalanithi, and rothenberger, ( ) contend that the study of ts with all its sensorimotor urges, its motor and vocal tics, its comorbidities, etc. has been a nexus between the fields of psychiatry, neurology, and psychology. in other words, studying the interaction of genetic and environmental factors in ts has led to significant contributions in understanding developmental psychopathology in general and the results of these studies could be very relevant to other child onset chronic disorders and the development of greater understanding of normal development as well (leckman, ). prevalence males are more likely to have ts than females, with estimates ranging from three to four times more likely (dornbush & pruitt, ) up to nine times more likely (meidinger et al., ). at the th international scientific symposium on tourette syndrome held in june of , dr. rebecca bitsko, phd. of the center for disease control presented the findings of the largest scale prevalence study completed to date. as part of the national survey of children’s health, , parents of children ages – were interviewed by phone and approximately , children were identified by their parents as having been diagnosed with ts, for a prevalence rate of about / , . boys were three times more likely to have been diagnosed with ts than girls. the majority of cases were characterized as mild, while % were considered moderate to severe. clinical etiology while the etiology of ts is still not fully understood, bagheri, kerbeshian, and burd ( ) reaffirmed the role of genetics while also concluding that environmental factors can influence the severity, risk and course of ts. most researchers do not believe that ts is caused by a single gene, but rather they believe that many genes have a role in its etiology (leckman et al. ). promising work by stillman et al. ( ) and others is being done to identify the gene or genes responsible for ts. speculation is ongoing that mutations on basal ganglia in the brain may be the cause of ts. much about the function of the basal ganglia remains unknown at this time, however researchers believe that it may play a role in the planning and coordination of specific movement sequences and in the selection of which of the actions being considered by the cortex actually gets executed (http://www.biology.emory.edu/research/jaeger/basalganglia/bg_page.html). some environmental factors showing a possible correlation with increased risk for ts include: low birth weight children (leckman, ; mathews et al., ); prematurity (robertson, ); perinatal hypoxia (leckman et al., ); higher incidence of maternal and obstetric complications, older parents, health problems manifesting in newborns as measured by lower apgar score (mathews et al., ); http://www.biology.emory.edu/research/jaeger/basalganglia/bg_page.html delivery with forceps, maternal stress, nausea smoking and use of alcohol and coffee (mathews et al., ; robertson, ). presentation and manifestation of ts the dsm-iv tr ( ) establishes the following criteria for diagnosing ts: (a) both multiple motor and one or more vocal tics at some time during the illness, although not necessarily concurrently, (b) the tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than year, and during this period there was never a tic-free period of more than consecutive months, (c) the onset is before age years, (d) the disturbance is not due to the direct physiological effects of a substance (e.g., stimulants) or a general medical condition (e.g., huntington’s disease or post viral encephalitis). normally a child will present to the doctor with chronic motor and vocal tics which usually start as simple tics affecting the eyes, head, and face as well as the shoulders and extremities (shavitt et al., ). typical onset is during childhood or adolescence with manifestation generally somewhere between to years of age, most frequently around years (raffaele et al., ; shavitt et al.). jankovic ( ) reports that this disorder is manifested by age of in % of patients. tics generally peak just before adolescence and tend to decline as the child moves into adulthood (kenney et al., ). more than % of those diagnosed with ts as children have symptoms that diminish as they go through adolescence and into adulthood (bagheri et al., ). some researchers believe that a full remission of symptoms occurs in as many one-third of those with ts after they enter adulthood (munson, ) while others believe the symptoms only diminish (bagheri et al.). five to ten percent of patients experience a course of intensifying symptoms with little or no improvement (bagheri et al.). figure outlines in detail the clinical course of ts over a lifetime. tourettic tics tics are part of a sensory urge that people with ts feel and to which they must respond (kenney et al., ; shavitt et al., ). while tics are real, people with ts can suppress them for short periods of time, during which the pressure to release the tics mounts (woods et al., ). eventually, however, the pressure becomes too much and the tics must be released. premonitory urges or sensations often precede and prompt tourettic tics (leckman, ; singer, ). these sensations are frequently activated by an inner tension which is temporarily relieved after the tic is performed (jankovic, ; jimenez- shahed, ). some people with ts feel the need to repeat tics until they feel that the tics have been done correctly and then the premonitory sensation is satisfied (jankovic, ; jimenez-shahed, ; kenney et al., ). zinner ( ) compares the premonitory urge to an itch such as we have all experienced. when we first notice the itch it may be small and innocuous and not need immediate scratching so we may choose to ignore it. over time the itch becomes more uncomfortable and it really starts to bother us and we begin focusing more and more on it. eventually we give in and scratch it and the relief we feel is immediate. these premonitory urges are sensory events that can be localized to various anatomical regions of the body and include such things as inner pressure, itches, urges, tension, etc. (leckman, ; singer, ). examples of premonitory sensations or urges are a burning sensation in the eye before an eye tic such as blinking occurs; a tightness in the arm or leg that can be relieved only by rotating or stretching these extremities, or an urge to clear the throat (jankovic, ). premonitory urges can be found in % of children and more than % of adults with ts (singer, ). tourettic tics follow a fluctuating course, which can be exacerbated by things such as stress, anxiety, or fatigue (bagheri, ). unless others are educated about the nature of tourettic tics, they may be understandably frustrated with a child who at times tics so uncontrollably yet at other times does not tic as much. this can be especially difficult to accept if a child has loud vocal tics which may be distracting or severe physical tics which interfere with activities of daily life, such as a jumping or hopping tic which interferes with normal walking. another potentially confusing feature of tourettic tics is that they can be voluntarily suppressed for a short period of time. people who are uninformed may tell children with ts to hold in their tics and not let them manifest themselves; these children are able to do so but for only a brief period of time. people with ts actually do not have real full control over their tics (chowdhury, ) and the pressure or tension builds up until they can no longer be held in. when this happens the tics express themselves in a more forceful manner than if they were released when the urge first occurred (chowdhury, ; jimenez-shahed, ; leckman, ; singer, ). additionally, as the pressure to tic builds, it takes so much effort to try to suppress them that it can become extremely difficult to focus on anything other than suppressing the tics. comorbidities the manifestation of tics may be the first sign of ts that families or friends notice but they may not actually be the first symptoms to present. the majority of children with ts have one or more comorbid disorders (fernandez-alvarez, ; ozonoff, strayer, mcmahon & filloux, ; shapiro, ; singer, ) which may manifest two or three years ahead of the tics (jankovic, ;). according to a report released by the cdc in , % of children diagnosed with ts were also diagnosed with a comorbidity, and % of those were diagnosed with adhd (bitsko, ). an estimated % to % of patients with ts are diagnosed with adhd and ocd, which are the most common comorbidities (stephens & sandor, ). in addition, stephens and sandor believe that adhd and ocd combined with ts can be associated with aggressive behavior such as rage in perhaps % to % of these patients. obsessive-compulsive disorder (ocd) is an anxiety disorder characterized by recurring, unreasonable, excessive, and time consuming obsessions or compulsions that cause significant distress or impair the person's ability to function in normal routines of life such as work, school, social activities or relationships (dsm iv-tr, ). obsessions are not just excessive worries about real-life problems but are intrusive, inappropriate thoughts, impulses, or images that the person recognizes come from his or her own mind and tries to ignore, suppress or neutralize them, yet they recur and persist and cause significant anxiety or distress (dsm iv-tr, ). compulsions are clearly excessive behaviors or mental acts the person feels strongly driven to do with the intention of preventing or reducing distress or feared negative outcomes even though these behaviors or mental acts do not have a realistic connection with the intended effect (dsm iv-tr, ). attention-deficit/hyperactivity disorder (adhd) is a disorder that is usually diagnosed in childhood (dsm iv-tr, ). symptoms include inattention and/or hyperactivity-impulsivity, are present before age years and cause impairment in at least two or more settings, such as school and home (dsm iv-tr, ). although tics can be embarrassing and physically uncomfortable (carter et al, ; jankovic, ; wilkinson et al., ), they are generally not as devastating to the person with ts as the comorbidities or coexisting medical conditions that make ts so difficult to manage (bagheri et al., ; fernandez-alvarez, ; ozonoff, strayer, mcmahon & filloux, ; schapiro, ; singer, ). many of the educational, emotional, social, and even occupational difficulties problems experienced by those who have ts are frequently more of an artifact of the comorbidities than of ts itself (raffaelea et al., ; sukhodolsky et al., ). this is particularly true for those comorbidities which can lead to learning disabilities and behavioral disorders (dykens et al., ; woods et al., ). while adhd and ocd are the most common comorbidities associated with ts (bagheri et al., ; bitsko, ) there are many others. the other more common comorbid conditions are listed in table . several studies conclude that children who have ts along with a comorbid condition have greater difficulty learning and adapting than children with ts only. a study conducted by brand et al. ( ) shows that those with comorbid adhd performed much poorer in their psychosocial functioning, while a study by valderhaug http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstract&term=% dykens+e% % bauthor% d http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstract&term=% dykens+e% % bauthor% d table . comorbid conditions associated with tourette syndrome  learning differences or disabilities (ld)  anxiety disorders  mood disorders  sleep disorders  executive dysfunctions  self-injurious behaviors  personality disorders  oppositional defiant disorder (odd)  behavioral comorbidities  impulse control difficulties  depression  rage attacks (bagheri et al., ; budman, bruun, park, lesser & olson, ; fernandez-alvarez, ; jankovic et al., ; shapiro, ; zinner, , part ; zinner, , part ). and ivarsson ( ) suggests a similar relationship when ocd is a comorbid factor. when children with ts alone were tested they performed much better in psychosocial functioning, intelligence as measured by verbal and performance measures, and word fluency than those with comorbid adhd (brand et al.). comorbid adhd and ocd in addition to ts are highly correlated with functional impairment and disruptive behavior, creating additional problems for children with ts and these comorbidities in both social and family settings (budman, ; stephens & sandor, ; sukhodolsky et al., ). the risk for potential criminal behavior is increased in those with ts who also have adhd (jankovic et al., ). research by robertson, banerjee, eapen, and fox-hiley ( ) indicates that children with ts and comorbid obsessive compulsive symptomatology along with symptoms of depression experience a variety of complex and challenging psychological difficulties. they also observe that the children’s caregivers experience complex problems as well. many studies demonstrate a correlation between psychosocial stress and the progression of many different disease states such as headaches, hiv, multiple sclerosis, and diabetes (findley et al., ). similar evidence suggests that both ts and ocd are sensitive to stress caused by psychosocial interactions and that children and adolescents with these disorders experience more stressful events and life stressors on a daily basis than the controls who were unaffected (findley et al.). behavior disorders besides the many comorbid conditions associated with ts, there are also a number of associated behavior disorders that can impact the social skills, learning ability, and personality of children with ts. cath et al. ( ), jankovic et al. ( ), and dornbush and pruitt ( ) have identified a few of these disorders as listed in table . a child with ts without any comorbid conditions may still experience ts-related behavior problems. some of the behavioral disorders that are most difficult to deal with include: rage, anger outbursts, physical aggression, argumentativeness, and so forth. children with ts only and no comorbidities may manifest symptoms of ts related behavior problems but they generally do so only minimally and without too much effect on their daily functioning (de lange & olivier, ). research done by zhu, leung, liu, zhou and su ( ) also documents that children with no comorbidities have the potential for some behavioral problems, but that such problems appear to be most closely associated with the severity of the child’s ts. disruptive behaviors such as explosive anger and rage, defined by budman and kompoliti ( ) as abrupt, unpredictable episodes of severe physical and/or verbal aggression which are grossly out of proportion to any provocation, experienced as table . behavior disorders  echophenomena (repeating back what others say)  echopraxia (repeating actions of others)  impulsive behavior  explosive outbursts  rage attacks  obscene language/gestures uncontrollable and distressing, and accompanied by physiological activation, are more common in ts children. in fact, budman, rockmore, stokes and sossin, ( ) estimate that – % of children with ts seen in their clinic have experienced behavioral problems manifesting themselves as lack of control of anger and episodic outburst. families with children with ts often identify rage as the symptom which impairs their child the most (budman et al.; chowdhury, ). children with ts who also have a comorbid condition such as ocd and adhd are more likely to have explosive outbursts (budman, bruun, parks, lesser & olson, ; de lange & olivier, ; gaze, kepley & walkup, ). approximately % to % of patients with ts display this type of behavior (stephens & sandor, ). it is not known whether these outbursts of aggression can be controlled or whether they are involuntary in the child with ts but it is clear that is they can lead to social as well as familial problems (de lange & olivier, ). children with ts but without the comorbidities of adhd or ocd are unlikely to have problems associated with rage (chowdhury, ). implications impact on families because of the limited amount of research done specifically on the impact of ts on fathers, i looked at literature that included both mothers and fathers and also other chronic illnesses as well as ts i did this as a jumping off point in the hope that this current work as well as future studies will document similarities and differences between the impact of ts and other chronic disorders on parents as well as the similarities and differences between the impact on mothers and fathers. my review of the literature shows that parents face many challenges when they have a child diagnosed with a chronic illness, and i have gained a greater appreciation and respect for parents who have children with ts as well as parents who have children with other chronic illnesses. i recognize that having a child with a chronic illness can create many problems for the parents, the family, and the child himself. those studies that have been done on the family impact of having a child with ts reveal increased stress and frustrations as well as a negative effects on family dynamics (carter et al., ; zinner, topolski, freeman, edwards & patrick, a). it is not uncommon for parents to feel frustrated, ashamed and confused and for them to have generally poor relationships with their child, marital difficulties, and substance abuse problems (wilkinson et al., ; zinner, topolski, freeman, edwards & patrick, b). the level of impact on the family is correlated to symptom severity along with the presence of comorbidities frequently associated with ts (wilkinson et al.; zinner et al., b). when dealing with ts, parents and families must deal with myths and misperceptions, as well as the obvious and often socially inappropriate tics of their child. the following are examples of some of the common myths surrounding ts and their refutation (a) ts is an extremely rare condition, but the fact is that it is estimated to be found in % of children; (b) the general population often believe that coprolalia (involuntary use of obscene language) is the characteristic that defines ts, but in reality it is found in less than % of people with ts; (c) people with ts can be recognized easily due to their tics, however the fact is that tics can be suppressed for short periods of time which can let people with ts temporarily escape notice; and (d) the diagnosis of ts is catastrophic, but the reality is most people with ts suffer from mild cases and can successfully live with this condition (munson, ; zinner, pt. ). a major problem reported by parents of children with ts is the challenge they face trying to manage and cope with their children’s behavioral problems, particularly aggressive behavior (cooper, robertson & livingston, ; de lange & olivier, ; jankovic et al., ). behavioral problems were identified by parents as the aspect of their child’s ts which had the greatest impact on their lives (cooper et al., ). mothers reported to de lange and olivier that they feel irritation, anger, and frustration, combined with fear for their children’s future, for the social and societal consequences of potential impulsive behaviors, even fear for their own safety from verbal abuse and physical assault as their children become larger and stronger. delange and olivier conclude that verbal abuse (swearing and insulting), physical assault (with a weapon, throttling, kicking, hitting with the fist), economic abuse (stealing parents’ money and belongings) and emotional harassment (manipulating and extortion) do occur and mothers have reason to be concerned. (p. ) in addition to aggressive behaviors which may hurt others, children with ts may engage in self-injurious behaviors which are difficult for others to understand and deal with. reporting on children with ts seen in clinical settings, budman and kompoliti ( ) find that between - % of patients with ts engage in self-injurious behaviors, such as head banging, slapping, self-biting, hitting, punching, orifice digging, pinching, or picking. research shows increased problems in children who do not have ts but who do have the two most common ts-related comorbidities, ocd and adhd (sukhodolsky et al., ). children with ocd are found to have increased problems adapting and functioning emotionally (sukhodolsky et al.). when children with ocd also have adhd the impact is even greater (sukhodolsky et al.). while this research was not conducted on children with ts, it does implicate the two most common comorbidities associated with ts, and it seems reasonable to wonder if the results could overlap into the tourettic population, especially with the many studies that demonstrate the comorbidities rather than the tourette's itself cause most of the problems for these children (bagheri, kerbeshian & burd ; brand et al., ; carter et al., ; coffey, ; cooper et al., ; schapiro, ; stephens & sandor, ). mothers and fathers of children with ts experience a significant burden of caregiving and negative impact on their general health, although fathers generally have less burden and health impact than mothers (cooper et al., ). compared to the parents of children with asthma, another chronic medical condition, mothers and fathers of children with ts have more burden and impact (cooper et al.). the social stigma and lack of social acceptance associated with ts is believed to be correlated with the greater caregiver burden experienced by parents of children with ts (cooper et al.). when a child is diagnosed with a chronic illness, parents face a variety of challenges, including: fear of the enormity of the diagnosis and their powerlessness to change it (lowes, gregory, & lyne, ); anxiety (bowes, lowes, warner, & gregory, ; lowes et al.); guilt, frustration, and sadness (bowes et al.); a changing social, emotional and personal world (bendrix, nordstrom, & sivberg, ; coffey, ; lowes et al.); fear, isolation, and depression especially around the time of diagnosis (coffey, ). although little research has been completed specifically on how parents respond when their children receive a diagnosis of ts (rivera-navarro, cubo, & almazan, ), looking at how parents react to their children receiving a diagnosis of other chronic illnesses may provide a good starting place for developing an understanding. parents whose children are diagnosed with type diabetes often experience a grief reaction similar to bereavement (bowes et al., ). the diagnosis is a life changing event for the parents as well as for the children with many short- and long-term ramifications and potential losses (lowes et al., ). these parents frequently lose confidence in their ability to protect their children and keep them safe, and this loss of confidence tends to continue long term even after parents become more knowledgeable about their child’s disease (lowes et al., ). the parents of children diagnosed with autism also experience grief, but the most devastating part of their grief is the despair they feel when they compare their child’s functionality to that of a healthy child (bendrix et al., ). they mourn the loss of having a child who can have a typical normal life and the loss of a future in which they can interact with their child as a normal adult (bendrix et al.). parents of children with impaired cognitive abilities often feel chronic and episodic sadness and guilt through their child’s adolescence and into adulthood, many never reaching an endpoint where they are free from intermittent grief or sorrow (bowes et al., ). lower parental expectations about the health and well-being of children with autism and childhood dementia leads to lower parental motivation and involvement in treatment and poorer outcomes for the children (wong & heriot, ). it is known that parents of children with ts report feeling a range of negative emotions about their child’s condition, including anger, hopelessness and powerlessness (rosen, ). one mother described her sense of helplessness and futility over the future of her -year-old daughter with ts whose vocal tics included barking noises which disrupted her classroom and prompted the other students to laugh and become impatient with her (rosen). this mother could not separate herself from the anger she felt even though she was well informed about ts and intellectually understood that it was a neurological disorder which her daughter could not control. understanding the impact of ts on both mothers and fathers is a vital underpinning to helping families with children with ts. i will close this section with excerpts from statements made by the mothers of children with ts who participated in de lange and olivier’s study and suggest that the results of this study are an important step forward which may set the stage for more fully understanding how fathers in particular are impacted. the power of de lange and olivier’s study can best be expressed using the mother’s direct quotes to share their experiences, as follows. one mother described some of the problems she faces after her child has behaved aggressively, “[when] he apologizes … i find it irritating … he hangs around me like a wet shirt … i want to say ‘get the hell out of my face … hate your guts!’” some of these mothers expressed fears of what may happen in the future in comments such as, “i don’t want him to do anything that he’s sorry about later” and “he’s older and bigger and … i think if he gets the chance … he will take on … [his father].” another mother expressed her concern for her child’s future like this, “where is this child going … in this society? i want to book him straight to prison … he has that kind of impulsive behavior.” others expressed concerns like, “the future is terribly worrying, the aggression part, wife, children, physical abuse, substance abuse … they’re high risk ... what is he going to do when he leaves school? how is he going to cope for the rest of his life?” some of the mothers feared for their own safety. they were afraid that aggressive, unacceptable behavior could escalate from “kicking me in the shins …” to “i’m concerned … that i’ll turn into an abused old person …” and that “he’s getting bigger, taller, stronger. i’m not sure whether i’m physically safe …” and “if there’s a weapon in the house, i’m sure he’ll use it.” future the reality is that ts can be a devastating condition that alone, or in combination with other closely associated psychopathology, causes considerable suffering for those with ts and for their families. de lange and olivier’s study of mothers ( ), the work of ylvén et al. ( ) and other research point to potential areas of study to learn more specifically about how fathers may be impacted. families with children who have ts are likely similar in many ways to those with other chronic illnesses, but, here again, the similarities and differences are only beginning to be understood. while the challenges of living with ts are real, we need to understand more about how they impact fathers and families. family systems theory and resiliency family systems theory a family is a complex system and consistent and healthy interactions between family members results in healthy family functionality as well as the development of individual members of the family (dickstein, ). dickstein explains that the family unit is comprised of multiple levels operating on an individual basis while interacting with each other. each member has a separate and distinct role which when combined with the other family members creates the whole. she also believes that families want meaningful stability and functionality. seligman and darling ( ) believe a family system functions much like a mobile found in the crib of an infant. in a hanging mobile the objects are independent of each other, and yet, by themselves they do not provide any activity. however, if one of the objects is touched, then the motion created by that touch will impact the others and cause movement among them. a family unit is very similar. each individual member can and does affect the other members. this description provides us with a simplistic visualization of family systems theory. a clearer picture of this theory evolves as we look at minuchin’s definition ( , p. ). the individual influences his context and is influenced by it in constantly recurring sequences of interaction. the individual who lives within a family is a member of a social system to which he must adapt. his actions are governed by the characteristics of the system and these characteristics include the effects of his own past actions. the individual responds to stresses in other parts of the system to which he adapts; and he may contribute significantly to stressing other members of the system. the individual can be approached as a subsystem, or part of the system, but the whole must be taken into account. family systems theory and resilience in the book “strengthening family resilience” walsh ( ) advocates the “systems theory” for examining family resiliency. combining the principles of family systems theory with resiliency creates a powerful framework from which to consider families who have a child with ts. as walsh explains, the family is a social system that consists of members with similar core values and beliefs which are paramount to effective family functionality and these beliefs strongly impact how the family deals with adversity. according to luthar, cicchetti, and becker ( ) resilience is: … a dynamic process encompassing positive adaptation within the context of significant adversity. implicit within this notion are two critical conditions: ( ) exposure to significant threat or severe adversity; and ( ) the achievement of positive adaptation despite major assault on the developmental process (p. ). edith grotberg ( ) defines resiliency as “… a universal capacity which allows a person, group, or community to prevent, minimize, or overcome damaging effects of adversity” (foreword). lazarus ( ) emphasizes the importance of managing response to both internal and external conflicts. this concept might be particularly important to consider as children with ts face both internal stressors such as the mounting pressure to release tics and external stressors such as pressure to conform to expectations of family members, peers, the education system, etc. according to carter et al. ( p ) children diagnosed with ts and comorbid adhd experience even more internal and external behavioral and social adaptation problems than children who have ts without adhd. a child with ts may challenge the family system, but a child with ts and comorbid adhd is even more likely to tax and possibly exceed the family’s ability to respond resiliently. as individual family members are impacted, the components of the family “mobile” impact each other. this may interfere with daily family activities and result in family dysfunctionality if the family as a system cannot respond effectively the following list outlines key concepts regarding family resiliency and the family as a system as explicated by walsh ( ): ) a healthy family is fluid and consequently changeable. ) crisis events and lingering stress affect the family and unless dealt with can create dysfunctionality in the family. ) the impact of stress can be mediated by learning how to buffer stress and promote recovery. ) maladaptive responses can heighten relationship stress as well as individual and family vulnerability. ) crisis events can be impacted by the family processes that are implemented to deal with the crisis. ) the family unit can be strengthened through the development of effective family resiliency in response to adversity. skinner and zimmer-gembeck ( ) suggest that researchers seek to understand the stress that children feel in their lives and how their development is shaped by their reactions to adversity. they also recommend that research on children focus on how they handle their response to emotional, cognitive, and behavioral stimuli. more specifically, it should focus on how they respond in real life situations and how these episodes affect children as they accumulate over time. understanding how children and adolescents respond to stress provides a depiction of how they deal with life’s adversity and how this adversity shapes their development. the development of children with ts can quickly be shaped by the difficulties they have responding to the social, emotional, and academic stressors to which they are exposed on a daily basis. a resiliency mapping model described by richardson and summerhays ( ) provides a graphical representation of the resiliency process. as shown in figure . , individuals or families move from the comfort zone in which they are in a familiar, relatively stable state of existence to a disruption, an event which causes a break in the normal cycle of daily life. the next step is resonation, a period during, which virtues or qualities are developed. these virtues or qualities enhance personal capability and empower individuals or families to move through a trough. the development of personal strengths occurs to the extent to which individuals or families take control of disruptions and accept responsibility for moving forward to resilient reintegration. loss of personal strength leads to coming out of a trough with a lower level of resiliency than before disruption. when little or no growth occurs there will be an approximate return to the previous level of functioning. resilient reintegration involves moving forward with the growth or gain obtained during the process of going through disruptions. the challenges facing children with ts and their families can be better appreciated using the perspective of both family systems theory and resiliency. these children and their families face the multiple stressors related to ts itself and possibly those related to the common comorbidities as well, each of which has its own attendant problems. when personal resources are exceeded it is difficult to respond effectively to challenging situations (folkman, lazarus, dunkel-schetter, delongis, & gruen, ). as stresses accumulate they may eventually exceed the capacity of both the children and their families to respond resiliently. purpose of the study the purpose of this qualitative study is to better understand: ) the relationships of fathers with their sons who have ts; ) the changes in father/son relationships which occur over time as fathers accompany their sons along their journey with ts; and ) the impact of this journey on the father’s relationship with his wife and other children. it also highlights how limited the research is to date and the critical need for further efforts to understand the impact of ts on families. i used grounded theory as the research design and the constructionist-interpretivist paradigm to help view reality through the lived experiences of these fathers. research questions two research questions guided this study: ) how do fathers cope with sons who have ts; and ) how does this impact the family dynamics? figure . richardson’s resiliency mapping model research questions two research questions guided this study: ) how do fathers cope with sons who have ts; and ) how does this impact the family dynamics? rationale for qualitative methods this study was conducted using qualitative research methods. this approach was appropriate in the study of fathers and their relationships with their sons with ts because qualitative research is useful for examining aspects of social life that are not easily accessed through quantitative data collection techniques (glaser & strauss, ) and when dealing with questions involving “subjective experience and situational meaning” (davies, et al., p. ). it is also recommended for research in fields in which there is limited knowledge (davies, et al., ). there is a gap in the research in the area of interest of this dissertation and using qualitative methods allowed me to gather data, draw conclusions, and generate new ideas about the interactions between fathers and their sons with ts. during the interviews with the fathers i was able to listen to their experiences as they described their life with their son with ts. this helped me gain a better understanding of their world, their perceptions, their frustrations, their happiness (ulin, robinson, & tolley, ). i was able get a glimpse of their lives, their thoughts, their hopes, their fears, their interactions, and their resiliency. this allowed me to interpret meaning from their lived experiences. researcher as instrument/horizons of understanding reflexivity as a researcher, i owed it to myself as well as to the participants of this project and those who read the final results to reflect upon those values that have shaped my life and could possibly impact my research. i looked at such things as my own ts and related struggles, my moral, ethical and social values, my beliefs about marriage and families, in particular about fathers and the way they related to their children, especially their children with ts. charmaz ( ), in her definition of reflexivity, explains that by scrutinizing his or her research, the researcher allows “the reader to assess how and to what extent the researcher’s interests, positions, and assumptions influenced inquiry” (pp. - ). she highlights the importance of taking a reflexive stance to inform others how the research was conducted, how it is connected to the participants, and how the written reports present the participants. morrow ( ) emphasizes that reflexivity provides researchers with the opportunity to examine how their research is impacted by their own personal experiences and world views. as a qualitative researcher i worked to be open and accepting of the idea that reflexivity was a vital part of my research and that my writing was shaped by what emerged (creswell, ). as part of this study, i acknowledge that my writing can impact not only myself as the researcher, but also the participants and those who read the study (creswell). with this qualitative dissertation i tried to be careful with how i handled the participants’ stories so they felt comfortable sharing with me openly and honestly (gilgun, ). treating participants with respect so that they did not feel marginalized, discredited or offended helped me maintain credibility with them and obtain valuable, rich information. i did my best to write an accurate interpretation and reflection of the participants’ stories. before completing this dissertation all participants were given the opportunity to read and edit their interviews and to provide additional input to ensure that i accurately reflected the story they told. no participants made changes to the transcripts i sent. i was careful to minimize my influence or the influence of anne evans-cazier, lcsw (approved by the irb to act as my interviewer) on the meaning of the participants’ stories. i was cognizant that our involvement could influence the research and that it was difficult if not impossible for me as the researcher to remain an outsider in this process. nevertheless, i tried to be very aware of my biases and by so doing believe i was able to write an accurate representation of the data i gathered. biases strauss and corbin ( ) discuss a concept which they call “waving the red flag” (p. ), i.e., advice to researchers about being aware of the biases that we bring to the research arena. they explain: analysts, as well as research participants, bring to the investigation biases, beliefs, and assumptions. this is not necessarily a negative trait; after all, persons are the products of their cultures, the times in which they live, their genders, their experiences, and their training. the important thing is to recognize when either our own or the respondents’ biases, assumptions, or beliefs are intruding into the analysis. recognizing this intrusion often is difficult because when persons share a common culture, meanings often are taken for granted. researchers sometimes become so engrossed in their investigations that they do not even realize they have come to accept the assumptions or beliefs of their respondents. (p. ) i tried to be diligent in recognizing bias by learning to stand back and observe and evaluate the data in an objective manner. because ts is such an integral part of my life and who i am, i had to do my best to avoid bias while realizing that it is impossible to be completely free from it (strauss & corbin, ). i was officially diagnosed with ts years ago at the age of , although my original symptoms manifested themselves within the usual time frame of onset, somewhere between the age of and years. i was very fortunate that i had parents who were understanding and patient with me even though i was a typical child with ts and comorbid add and ocd. at the time of diagnosis i had little understanding of the problems that ts frequently creates for families. i am a father, but none of my children have ts so i do not know what it is like to be a father of a child with ts. however i do know what it is like to be the child with ts. armed with this knowledge and experience i believe that i was able to approach this project with passion, insight, understanding, compassion, and reflexivity. as a result i felt my own horizons were expanded as i recorded and interpreted the stories of the fathers participating in this research. my parents had their imperfections and struggles and they made their mistakes, but for me as a boy with ts they could not have been better parents. among other things, they provided me with the two greatest constants i needed in order to survive: ) love and ) unconditional acceptance. i am sure this was extremely difficult for them considering they did not know what ts was or anything about add or ocd. the potential bias of most concern to me is the fact that my father set such high standards for me, my ts, and my success in living with this problem. i was never put down nor do i ever remember being the recipient of a verbal attack due to any frustration he may have felt with me. i was not spanked and i do not remember him losing control of his anger when he disciplined me. i did not ever get the feeling that he was embarrassed of me but rather he always showed pride and confidence in me. because of my lived experiences with my father i can see how i could have been very biased against fathers who were ashamed or frustrated or embarrassed about their son with ts. but i believe that i was able to avoid comparisons and conclusions based on my lived experiences. subjectivity subjectivity helped position me as a “co-constructor of meaning” (morrow, , p. ) as i worked to interpret the data. i tried to set aside my own preconceptions and experiences as much as possible by making my biases known and taking measures to bracket them and then be consistent with my bracketing so that i could better understand the experiences of the study participants (creswell, ). in reality, bracketing was more difficult than it seemed theoretically, but i was conscientious in my awareness and realized that i was not expected to eliminate all bias (creswell; strauss & corbin, ). managing biases being upfront and open about my biases and the impact they could have on the development of my theory freed me to use my creativity and explore connections in the emerging theory (cutcliffe, ). this process made it possible for me to interpret the data accordingly (greenhalgh & taylor, ). another method i used to manage bias while enhancing rigor was to create an audit trail by thorough documentation of my data in such a way that other researchers may reconstruct my process. to this end i carefully recorded and documented my interviews, including my observations and conclusions (strauss & corbin, ; ulin et al., ). data analysis data analysis was an ongoing, evolving process through which theory emerged. the theory which emerged was an ever developing process, not a perfected conclusion (glaser & straus, ). i used an iterative cycle of explicit coding and constant comparison to identify multiple categories, properties, and hypotheses along the way. immersion a thorough analysis of the data required the researcher to immerse himself in the data by reading and rereading the data in order to become familiar with it. i recognized that the data generated would be voluminous and to avoid becoming overwhelmed i immediately began immersing myself in the data. this familiarity helped me become more cognizant of emerging themes (marshall & rossman, ) and, it aided in the development of meaningful codes and categories (ulin et al., ). through early immersion i was able to (a) acclimate myself to the data, (b) start coding the data, (c) identify gaps in the data which i addressed early, (d) follow-up more quickly with study participants if more detail was needed or questions arose, and (e) identify emerging themes early in the process. i immersed myself in the stories the fathers told, made and studied field notes, wrote and reviewed memos which were included in a reflective journal, used analytic memos, and reviewed transcriptions and observations. these activities enabled me to find the core meaning embedded in the data and guided me in my interpretation of the data. memos memos were integral in the development of my theory and were used for more than just storing information. they aided me as i moved from raw data to developing concepts. they encouraged early analysis of codes and data and they facilitated creativity and imagination by stimulating ideas. these memos also served as a key transition from data collection to preparing reports of my findings (charmaz, ; strauss & corbin, ). i used them to record, sort, order, retrieve, cross-reference categories and themes, and help determine which concepts should be developed and refined (strauss & corbin). continual writing encouraged creativity and new insights, which helped the data analysis to proceed to more powerful interpretations (marshall & rossman, ). during this process i wrote regularly using memos and a reflective journal. all of this was done with the intent of strengthening my writing and improving the final product. constant comparative method as a grounded theory researcher i used constant comparative methods to make comparisons between the data gathered through observations, interviews, and other materials. these comparisons were helpful in identifying and developing emerging ideas and categories (strauss & corbin, ). this process brought insight and meaning as i transformed the data into significant findings (marshall & rossman, ). both data analysis and the discovery of theory involved interpretation and active engagement through the use of comparative methods (charmaz, ). i employed the four stage constant comparative method as outlined by glaser and strauss ( ). these stages included (a) comparing incidents applicable to each category, (b) integrating categories and their properties, (c) delimiting the theory, and (d) writing the theory. stage one in this stage i coded each incident into as many different categories as possible and compared it with other incidents already recorded in the same category. this process led to the clarification of the theoretical properties of the categories (glaser & straus, ). stage two in stage two i moved from comparing incidents with incidents to examining how incidents compared with the properties of the emerging categories. analyzing data in this manner throughout the data collection process led to the development of theory as the properties of categories become integrated through a constant comparative process (glaser & strauss, ). stage three in the third stage of the constant comparative method i delimited the process in the three major ways outlined by glaser and strauss ( ). first, the theory tended to emerge in a natural way as new incidents and observations aligned with previous ones which prompted fewer and fewer major modifications of categories and their properties. second, the number and variety of coding categories began to reduce. and lastly, the list of categories was further delimited as i observed fewer and fewer new incidents which added new insight to the already established patterns. stage four in stage four i experienced a growing confidence in the theory emerging from the data, categories, memos, and major themes that had evolved. concept formation and development concepts were developed through the use of coding to identify recurring themes, phrases, concepts, or even words that eventually led to the discovery of patterns in the data (field, & morse, ). the coding process included the three phases outlined by strauss and corbin ( ): open coding, axial coding, and selective coding. open coding strauss and corbin ( ) compared open coding to putting together a puzzle. when the pieces of a puzzle are dumped out onto a table, they are in a jumbled state of disorganization and the picture they could make is unclear. sorting the pieces into groups by certain qualities, such as by color or whether or not a piece is an edge piece, helps to form groups, which aids in identifying patterns and fitting the pieces together to form a coherent picture. similarly, in open coding, the initial data collected may appear to be a jumble and a coherent picture is not clear. the researcher may look at his data and wonder what he has, where he should start, and how to identify what is important. each researcher must analyze the data, identify key categories of happenings, events, and instances, and then create his own scheme for coding the emerging categories (creswell, ; marshall & rossman, ). in this study coding the data in as many ways as possible allowed the researcher to discover categories and properties that would have been difficult to find otherwise (glaser & strauss, ). my initial efforts were only tentative analyses which laid the foundation for a more critical analysis. the memos used in open coding helped in my conceptualization and thinking process (strauss & corbin). axial coding continuing with the analogy of the puzzle, during the axial coding phase pieces of the data puzzle began to be put together (strauss & corbin, ). the properties and dimensions of the categories were further developed by answering questions of where, when, what, how, with whom, and with what consequences (strauss & corbin). subcategories were defined and refined in relation to the broader categories as the data was reassembled. each piece of the puzzle was put into its place and the data became clearer and the quality of conceptualization of the whole improved (strauss & corbin; charmaz, ). selective coding during the final phase, selective coding, the categories that needed further development were filled in and the data were analyzed with increasing refinement to identify a core category around which concepts integrated (strauss & corbin, ; creswell, ). the possible relationships between categories were explored and integrated into a theory (charmaz, ). comparative analysis comparative analysis has come to encompass many meanings and is used for many different purposes, however glaser and strauss ( ) believe that comparative analysis is a generalized method used to generate theory that can be used for any population no matter its size. for the purpose of this research i used it to: validate facts by assuring the accuracy of the evidence gathered; establish empirical generalizations of these facts so that theory had more power to explain and predict; verify the theory and the relevance of the emerging categories through continual analysis and data checking and; generate new theories from the gathered data. charmaz ( ) believes that the data should be analyzed from the bottom-up because the strength of grounded theory lies in how well it is grounded in the data that was gathered. this approach provided me with a method of viewing the data in a subjective manner. i was open to the unexpected that may have occurred during the data gathering process and the potential direction in which it took me (charmaz). in order to provide a thorough analysis of the data, i immersed myself in reading and rereading the data. by doing this i became familiar with it which helped me become more cognizant of emerging themes (marshall & rossman, ) and, in the long run, aided in the development of meaningful codes and labels (ulin et al., ). immersing myself in the stories the fathers told me, studying my field notes and reviewing my observations enabled me to obtain the core meaning of what the fathers were really sharing in terms of their feelings and thoughts and even behaviors. eventually this immersion helped guide me in my interpretation of the data. marshall and rossman ( ) encourage researchers to write continually in order to generate new insights. during this research process i wrote regularly and frequently on my thoughts, ideas, attempts to be creative, questions that needed to be asked, follow-up to be done, and so forth. all of this was done with the intent of strengthening my writing and improving the final product. trustworthiness rigor was maintained by adhering to the accepted policies and procedures for qualitative research and by compiling an auditable trail of documentation throughout the process. this included keeping a reflective journal in which i recorded my thoughts, my feelings, unusual events, ideas that helped guide my research, etc. throughout this process i maintained an awareness of my biases, bracketed them and was consistent when i discovered new ones. i kept an auditable trail of thorough documentation of the data collected and the analysis process (lietz, langer & furman, ; robert wood johnson foundation, retrieved ). primary data for this project were gathered from interviews conducted with fathers who had sons with ts. observational data were gathered and recorded at the time of the interviews and immediately following them. some fathers were also observed on various other occasions that arose. the data were reviewed after every interview and observation. this allowed me to notice new ideas and to be in a position to make any modifications that were needed, while at the same time maintaining the integrity of the study and strengthening the data i gathered (ulin et al., ). lietz et al. ( ) suggests that it is essential to protect the rigor of qualitative inquiry by engaging “in efforts that increase our confidence that our findings represent the meanings presented by our participants” (p. ). to do this i tried to accurately reflect the meanings and visions of the fathers’ reports of their thoughts, feelings, and experiences towards their ts children over my own (lietz et al.). ethical considerations this research was guided by the regulations and guidelines established by the university of utah for doctoral students writing their dissertation. as part of these regulations and guidelines, i submitted relevant and required material to the institutional review board (irb) for approval including the commitment to following the established protocol for doing research with human subjects. minor changes to the initial procedures for this study were submitted for review and given approval by the irb prior to implementation. professional integrity, ethics, and confidentiality were maintained throughout this process. participants were verbally notified of study requirements and purpose. the process for obtaining consent was followed explicitly before any interview began and each participant signed an irb approved informed consent form prior to participating in the study. i also signed the consent form and gave one copy with both signatures to the participants and kept the second copy for my records. participants were advised of the confidential nature of the interview and given an explanation of how the interview data would be used. the consent form informed them that their identity would be protected and that any personal data or direct quotes used would be referenced by fictitious names (creswell, ). in addition i explained that all data would be stored in a secure, locked file accessible only to me and that participants could withdraw from the project at any time and for any reason. i also informed participants before the interviews began that if they disclosed information about the abuse of children or the elderly that i was obligated to file a report with the appropriate authorities. in order to prevent potential harm to the participants i tried to be sensitive to their vulnerabilities as they expressed their deepest thoughts, fears, emotions, frustrations, etc. i recognized that it was my responsibility to protect these participants from potential harm (ulin et al., ). bowen ( ) cautions qualitative researchers to be aware of and guard against the likelihood that they may be at greater ethical risk than quantitative researchers. he suggests potential sources of such risk include: ) the closer contact a qualitative researcher is required to have with the participants in order to adequately gather the data requires an immersion into the life of the fathers. ) the closer involvement with the research itself. ) the greater latitude in how the data is interpreted. explanation of reporting format this dissertation follows the three article format. chapter reports on the results of my qualitative research on fathers with sons with ts. the overarching finding which emerged in this study was that the fathers experienced a waxing and waning pattern of response in the face of an uncertain future which seemed to be influenced by the intrinsic nature of ts. they reported experiences along a continuum of success, ranging from effective responses which seemed to lead to personal growth and resilience and stronger relationships with their sons and families, to ineffective responses, difficulty developing personally, and relationship strain or deterioration. the waxing and waning pattern of responses occurred along five major themes: ) the question of normalcy, ) pride in son, ) hope in the future, ) acceptance, and ) role satisfaction. chapter is a theoretical article exploring the potential for the application of waves one and two of resiliency inquiry as described in richardson’s metatheory of resilience and resiliency ( ) to fcts. the first wave of resiliency research involves the identification of resilient qualities and how they can be utilized to optimize fcts functioning. the second wave of resiliency research deals with the resiliency processes through which families gain access to or recognize and utilize their innate resilient qualities to grow stronger and reintegrate with gain; richardson’s resiliency mapping model ( ) provides the springboard for the development of a ts-adapted graphical representation of the resiliency process. chapter is another theoretical article and examines the application of wave three of resiliency inquiry as described in richardson’s metatheory of resilience and resiliency ( ) to fcts. this involves the identification of the energy, passion, and motivation that can lead fcts through their trough of chaos and along their journey of living resiliently with ts (richardson). chapter provides a review of the research findings. in addition, this chapter also offers suggestions for future research. appendix a: interview question guide below are the general questions that guided the interviews. the interviews began with the most general questions and the interviewers tried to encourage the fathers to tell their story in their own way. not all questions were asked of each father as frequently the fathers covered the relevant topics without direct questioning. research question # : from the perspective of fathers who have a son with tourette syndrome, how have they reacted to and coped with having a son with tourette’s? ) please tell me a bit about you and your family. how long have you been married? how many children? names and ages. your education and occupation. your wife’s education and occupation. ) how has having a son with tourette’s affected your life? ) how would you describe your son with ts? ) how would you describe the severity of your son’s tourette’s? ) when your son with ts was born – what were your hopes, dreams, and aspirations for this son? have they changed? if so, how? ) after your son began to exhibit some symptoms, but before he was diagnosed, what were your thoughts/feelings? ) when your son was first diagnosed with ts, what were your thoughts? fears? concerns? have they changed? if so, how? ) can you talk about any struggles your son with ts has had in school, your perceptions of his educational abilities, other interests/talents he has? ) do you know if your son tries to suppress his tics in certain situations? explain. ) do you talk with your son about ts? ) do you view your son with ts as being ‘disabled’ or ‘handicapped’ or ‘special’? please share your thoughts. ) how has having a son with ts impacted your relationship with your wife? ) how has having a son with ts impacted your relationship with your other child/children? ) has having a son with ts impacted other areas of your life? ) what are your biggest challenges with having a son with ts? and how do you cope? ) do your aspirations, hopes, and dreams for your son with ts differ from those you have for your children without tourette's? if so, how? ) do you think your social life is impacted as a result of having a son with ts? if so, how? research question # : how do fathers of sons with tourette syndrome understand their role in the family dynamics? ) how do you understand your role as a father? ) how do you think having a child with tourette's has impacted your family? ) how do you perceive your responsibilities as a father to your son with ts? ) are these perceptions and responsibilities different towards your son with ts verses your child/children without ts? how? ) describe the energy it takes to provide for the needs of your son with ts. ) how do you balance the needs of your son with ts and the needs of your other child/children? ) is the way you cope or discipline different in the home vs. out in the public? ) what are your thoughts about your son’s perceptions of you as a father? ) how do you cope with having a son with ts? references abelson, j. f., kwan, k. y., o'roak, b. j., baek, d. y., stillman, a. a., morgan, t. m. et al. 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( ). tourette syndrome—much more than tics—management tailored to the entire patient, pt . contemporary pediatrics ( ): - . zinner, s. h., topolski, t. d., freeman, r. d., edwards, t. c., patrick, d. l. ( a). family experience of youth with tourette syndrome. abstract . journal of developmental & behavioral pediatrics, :( )p s . [abstracts of plenary sessions and posters accepted for presentation at the annual meeting of the society for development and behavioral pediatrics]. zinner, s.h., topolski, t. d., freeman, r. d., edwards, t. c., patrick, d. l. ( b). quality of life among youth (ages - ) with tourette syndrome. abstract . journal of developmental & behavioral pediatrics, :( )p s . [abstracts of plenary sessions and posters accepted for presentation at the annual meeting of the society for development and behavioral pediatrics]. zhu, y., leung, k. m. , liu, p. z., zhou, m., & su, l. y. ( ). comorbid behavioural problems in tourette's syndrome are positively correlated with the severity of tic symptoms. aust n z j psychiatry, ( ): - . http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstractplus&term=% zhu+y% % bauthor% d http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstractplus&term=% leung+km% % bauthor% d http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstractplus&term=% liu+pz% % bauthor% d http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstractplus&term=% zhou+m% % bauthor% d http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstractplus&term=% su+ly% % bauthor% d chapter the relationship of fathers with sons who have tourette syndrome and the impact on the family abstract this study provides an introductory understanding of some of the challenges and problems associated with having a son with tourette syndrome (ts) and the potential impact on fathers and the family. this qualitative study using grounded theory was conducted to better understand: ) the relationship of fathers with their sons who have ts; ) how father/son relationships changed over time; and ) how this impacted the father’s relationship with his wife and other children. recruitment came from one of two sources: ) the neuropsychiatric clinic tourette syndrome genetic study at the university of utah; and ) snowball sampling. these fathers faced the normal and expected challenges that other fathers experienced raising their children, in addition to challenges influenced by the intrinsic nature of ts. by its very nature, ts waxes and wanes and follows an unpredictable course. new tourettic tics tend to develop spontaneously, last for an unpredictable period of time, may intensify or not, may or may not fade away or diminish. tics vary in location, complexity, severity and frequency. new tics may follow old tics or be superimposed on existing ones. the process of new tics developing, intensifying, and fading is referred to as waxing and waning. . each father experienced and reacted to the waxing and waning of his son’s symptoms as well as the uncertainty about what the future would bring. fathers reported a range of effectiveness in responding to challenges. some challenges were created directly by ts and its related comorbidities and are categorized as primary challenges. others were created by the fathers’ ineffective responses to these primary challenges and are categorized as secondary challenges. as fathers responded effectively to primary challenges they experienced personal growth which led to stronger, more positive relationships with their son and other family members. father’s responding ineffectively experienced secondary challenges creating further difficulties and negatively impacting family relationships. the fathers’ waxing and waning pattern of responses in the face of an uncertain future occurred along five major themes: ) normalcy, ) pride, ) hope, ) acceptance, and ) role satisfaction. introduction although an estimated , children in the united states have tourette syndrome (ts) (zinner, ), little research has been done on the impact of a child’s ts on parents and the family, and even less has focused specifically on how fathers in particular are impacted when a child with ts is part of the family and how this in turn impacts the family (wilkinson et al. ; woods, himle, & osmon, ). from a family systems theory perspective, it is not just the children who have ts, but it can truly be said that all members of their families have ts, in the sense that whatever affects one family member affects the entire family. in order to begin filling in that significant gap in the literature, this study concentrates on fathers and their relationships with their sons with ts and the impact on the family. purpose the purpose of this study is to provide an introductory understanding of some of the challenges and problems associated with having a child with ts and the potential impact on families. it also highlights how limited the research is to date and the critical need for further efforts to understand the impact of ts on families. this qualitative study was conducted to better understand: ) the relationship of fathers with their sons who have ts; ) how father/son relationships changed over time as fathers accompanied their son along his journey with ts; and ) how this journey impacted the father’s relationship with his wife and other children. i used grounded theory as the research design and the constructionist-interpretivist paradigm to help view reality through the lived experiences of these fathers. literature review the unique difficulties, frustrations, and challenges confronting children with ts can provide opportunities for personal growth and development, but they can also lead to frustration, social miseries, academic problems and much heartache (hendren, ; woods and marcks, ). it is not uncommon for children with ts to be misunderstood and subjected to teasing, bullying, and even to cruel jokes (chowdhury, ; hbo documentary, ). these children live with challenges that most people do not even realize which can have a major impact on family dynamics and functioning and create distress and disruption in their lives. families with children with ts face all of the same challenges that other families face in addition to those associated with ts. the resilient family recognizes the chaos created by disruptions and works to turn these into family strengths, which can lead to changing the very nature of the family itself (flach, ). symptoms of ts can occur as early as infancy, although about years of age is more typical, and even the earliest symptoms a child experiences can create disruptions in families (hawley, ). zinner ( , pt. ) reports that after tourettic symptoms become more noticeable and comorbidities reveal themselves parents often experience “incredible relief” when they eventually seek medical advice and their child receives a diagnosis. methods grounded theory using a grounded theory research design allowed me to be rooted in the perceptions and lived experiences of both the study participants and myself as the researcher. i did not begin with a preexisting theory, but rather developed a theory grounded in the data gathered through listening to each father tell his story, and observing his reactions and emotions during the interview. in several cases the father invited his wife and son to visit with me after the interview. this allowed me to make first hand observations of the interactions of the father with his wife and son. i also had some additional contacts with fathers, with one father at a tourette syndrome association summer picnic and with another father at a community event. in both cases i was able to observe the fathers interacting with their families (creswell, ; dick, ; rennie, ; ulin et al., ). as the process unfolded, the richness of the data was incorporated into the generation of the theory (fassinger, ). constructionist-interpretivist paradigm the constructionist-interpretivist paradigm suggests that there are multiple realities, each of which is valid, (haverkamp & young, ) and that the meaning of these realities must be interpreted rather than being directly observed. this paradigm was used to view reality through the lens of the lived experiences of the fathers. it helped shape my view of the fathers’ worlds through their perceptions. as such it influenced the problems that were studied, the data that were found useful, the methods used to gather the data, the way the study was conducted and myriads of other decisions and choices involved with this research (ulin et al., ). selection procedure participants were selected to create a homogeneous sample that met criteria established prior to data collection. the selection criteria was intended to: ) generate a sample which was homogeneous in several key areas; and ) help distinguish the stresses associated with having a son with ts as they accumulate over time from other stresses that might impact a father. fathers dealing with multiple significant life stressors in addition to having a son with ts may react very differently to their ts son. the initial focus was on sons because ts is more prevalent in males and studying only males at this point eliminates possible gender related differences in how fathers interact with a child with ts. studying only sons who have had ts for at least - years is important as the length of a father’s exposure to his son may have an impact on his reactions toward his son due to accumulated stress and frustration (ferre, rc. ( ). in order to have a valid study it is important to have enough participants to reach redundancy. however, according to morrow ( ) the size of the sample does not necessarily determine the quality or adequacy of the evidence produced in qualitative research. from the beginning it was anticipated that the study would involve - participants, the final number to be determined by the progress of the data collection. recruitment recruitment of fathers came from one of two sources: ) the neuropsychiatric clinic tourette syndrome genetic study; and ) snowball sampling, which is obtaining a sample (father meeting the criteria) from someone who is well-situated to refer cases (morrow, sl. ). thirteen fathers were interviewed but only nine were used in this study. four additional fathers were selected but did not meet the criteria. pertinent data were not in two of the clinic files and the information was incorrect on two other fathers referred through snowball sampling. due to the fact that these four fathers took time out of their busy schedules and were willing and anxious to participate, i continued with the interviews even after i ascertained that they did not conform to the selection criteria. these were nonconforming cases contained many similarities as well as differences and offered other perspectives on the impact of having a son with ts that could lead to future research. information from these fathers was not included in the data analysis, but is mentioned in the text. these fathers and the perspective they shared are identified as non- conforming cases. data gathering data were gathered through semistructured interviews conducted by anne evans- cazier, lcsw and me. because i have been diagnosed with add i received approval from the irb at the university of utah to use anne to conduct the interviews with me being present to ask additional or follow-up questions as needed. also, this freed me to observe the fathers during all interviews. the interviews lasted - minutes and were audio-recorded and then transcribed. the interview questions are listed in appendix b. the interviews began with open-ended questions about the father and son relationship and the family. more specific or in-depth questions were asked as needed to elicit information pertinent to all of the questions on the question guide. many fathers addressed a number of question topics without direct questioning so not all fathers were asked all questions, however each father covered all question topics either directly or indirectly. data analysis data analysis began with a systematic examination of the data gathered from individual interviews of the fathers. these interviews helped me identify relationship patterns between the fathers’ and their sons. all fathers had different experiences leading to their own understanding of their reality of living with the challenges of their sons ts. data analysis was an ongoing, evolving process through which theory emerged. the emergent theory was an ever developing process, using an iterative cycle of explicit coding and constant comparison to identify multiple categories, properties, and hypotheses along the way. constant comparative methods were used to make comparisons between the data gathered in the individual interviews of the fathers. these comparisons were essential in identifying emerging ideas, developing categories, bringing insight and meaning to the data, and interpreting and transforming the data into significant findings. comparative analysis was used to: ) validate facts by assuring the accuracy of the evidence gathered, ) establish empirical generalizations of these facts so that theory has more power to explain and predict, ) verify the theory and the relevance of the emerging categories through continual analysis and data checking, and ) generate new theories from the gathered data. the data were broken down and put together again in new and meaningful ways, leading to the identification of overarching themes. in order to provide a thorough analysis of the data, i immersed myself in reading and rereading the data. by becoming familiar with the data i became more cognizant of emerging themes which aided me in obtaining the core meanings of the stories these fathers shared in terms of their feelings and thoughts and even behaviors. this immersion guided me in my interpretation of the data. rigor was maintained by adhering to the accepted policies and procedures for qualitative research which included: peer reviews to help with data analysis and interpretation, memoing, note taking, and reflective journaling to record my thoughts, feelings, interactions with the participants, new ideas, etc. throughout this process i maintained an awareness of my biases, bracketed them, and was consistent when i discovered new biases. results the overarching finding which emerged in this study was that the fathers experienced a waxing and waning pattern of response in the face of an uncertain future which seemed to be influenced by the intrinsic nature of ts. they reported experiences along a continuum of success, ranging from effective responses which seemed to lead to personal growth and resilience and stronger relationships with their sons and families, to ineffective responses, difficulty developing personally, and relationship strain or deterioration. the waxing and waning pattern of responses occurred along five major themes: ) the question of normalcy, ) pride in son, ) hope in the future, ) acceptance, and ) role satisfaction. the results are presented as follows: ) the influence of the intrinsic nature of ts on fathers’ response pattern, ) the fathers’ continuum of effective responses to the challenges associated with ts and related comorbidities, and ) the unfolding of the five major themes in the lives of the fathers over time. response patterns influenced by nature of ts these fathers faced all of the normal and expected challenges that other fathers experience raising their children, and they also experienced additional challenges influenced by the intrinsic nature of ts. by its very nature, ts waxes and wanes and follows an unpredictable course (bagheri, kerbeshian, & burd. ; leckman. ; chowdhury. ; edell, motta. ). new tourettic tics tend to develop spontaneously, last for an unpredictable period of time, may intensify or not, may or may not eventually fade away or diminish. tics vary in location, complexity, severity and frequency. new tics may follow old tics or be superimposed on existing ones. the process of new tics developing, intensifying, and fading is referred to as waxing and waning. the pattern of waxing and waning in ts is unpredictable (chowdhury, u. ). each father of a son with ts experienced and reacted to the waxing and waning of his son’s symptoms as well as the continuing uncertainty about what the future would bring. the fathers spoke of the many, varied challenges they faced that led to the waxing and waning response phenomena they experienced. human thoughts and emotions are, of course, complex and do not fit easily into tidy packages, however, these phenomena can be grouped meaningfully into two categories which appeared to have an interactive waxing and waning connection to each other as seen in figure . . every father reported his own issues with his ts son that was part of his life and challenge of being a father. although there were similarities between the fathers, each was uniquely challenged to develop his personal strengths in response to the waxing and waning and unpredictable course associated with his particular son’s ts. the level of personal growth and resilience appeared to lay the foundation for and give direction to the developing relationships. fathers reported that as they became more knowledgeable about and experienced with the course of ts, they learned to recognize the waxing and waning of their son’s symptoms. as they described their own responses to ts it became apparent that they experienced a waxing and waning course of thoughts and feelings as each tried to deal with his son and his struggles. for example, many of the fathers reported that sometimes they had confidence that their son could successfully adjust to the challenges of ts and that at other times they became fearful that their son would never be able to live a normal life. figure . father’s waxing and waning continuum of effectiveness in fathers’ responses fathers reported a range of effectiveness in responding to challenges. some challenges were created directly by ts and its related comorbidities and will be categorized as primary challenges. others were created by the fathers’ ineffective responses to the primary challenges and will be categorized as secondary challenges. there appeared to be a cumulative or additive dimension to the fathers’ response patterns which led fathers to head down diverging paths. overall it was observed that as fathers responded effectively to primary challenges they experienced personal growth and laid a foundation for building stronger, more positive relationships with their son with ts and other family members. on the other hand, as they struggled and responded ineffectively they experienced secondary challenges which created further difficulties and negatively impacted family relationships. primary challenges are life events/stimuli that are related to the son’s ts and/or co morbidities which can impact the father either directly or indirectly. take for example the situation of a father who has an ineffective emotional reaction to a new experience with his son with ts. the new experience is the “primary challenge” and his ineffective emotional reaction would become his “secondary challenge.” the fathers’ stories suggested that when they responded effectively to primary challenges, they headed down a path in which they were strengthened by this initial response and developed personal qualities that positioned them to respond effectively to the next primary challenge they would face. in addition, their effective response did not create a secondary challenge, with its attendant disruptions and struggle. on the other hand, when fathers had an ineffective response to a primary challenge and created a secondary challenge, they headed down a path in which the initial response not only left them without the development of new strengths, but in which they also now faced the additional secondary challenge. further analysis of the data suggested that one ineffective response and the creation of a secondary challenge was often followed by an ineffective response to the secondary challenge and therefore the creation of yet another secondary challenge in a spiraling pattern of loss and disruption. for example, one of the fathers in the study, cameron, faced the primary challenge of his son’s tics and spoke about how hard it can be on parents “to sit back and not make a big deal of it…. i don’t think we did but there is this impulse, i mean, i see why people do. you know, because you are worried about it and you want to help them … i want to make sure he feels comfortable … i try to be sensitive to him.” this father recognized his son’s ts-related difficulty and worked hard to have a sensitive and appropriately supportive, effective response resulting in personal growth and resiliency. another father, mckay, faced a similar situation which resulted in the creation of a secondary challenge. mckay shared his experience, “sometimes i’ll yell at him and physically move him away from the situation or tell him that he needs to go and you know, chill somewhere, and be away from his brother or be away from everyone until he can, kind of get a grip, and, and that might not necessarily be the most productive way to deal with it, nevertheless that’s what happens from time to time, and you know, that’s, that’s one segment of my poor coping strategy.” in this case, the father’s ineffective response created a secondary challenge of tension and disconnection in the father-son relationship. he still needed to find a way to deal effectively with the original tic related issues and now also faced the secondary challenge of the tension and disconnection created by his response. the pattern these two fathers put in motion differed. the first father became stronger as he effectively coped with his son’s tourettic tics and related comorbid behaviors. his responses helped him develop himself personally and prepare to cope effectively with future challenges. the second father experienced a similar primary challenge but dealt with it ineffectively which put him on a more difficult path along which he now had to deal with additional problems such as distancing and disconnection. as he explained, “then it comes back to … you’re not being fully engaged with family.” ineffective responses such as this led fathers in this study to repeated ineffective responses, continuing until they could respond effectively to challenges. five major themes unfold the following sections examine each of the five major themes which emerged from the fathers’ reports of their experiences with their son with ts over the course of time i.e. normalcy, pride, hope, acceptance, and role satisfaction. theme one: normalcy most of the fathers in this study indicated that they were quite conflicted about whether or not their son should be considered normal or handicapped. this appeared to be a sensitive and confusing subject about which their thoughts and emotions waxed and waned, sometimes within just a few moments in the interview itself as well as by report throughout time in their everyday life. during the interviews several fathers said they did not consider their son to be handicapped at one point and then that they did consider him to be handicapped at another point. the uncertainty of the future seemed to play an important role in this waxing and waning. the question of normalcy usually first arose when a father noticed odd sounds or behaviors that were later recognized as his son’s first tourettic tics. many fathers reported a period of waxing and waning uncertainty and fear during which they weren’t sure whether what they were observing in their son was part of normal maturation and development or something out of the ordinary. some fathers quickly realized that their son had ts, while others remained confused and bewildered much longer, sometimes even for years. those in the study who were the quickest to realize that their son had ts had some previous knowledge of ts or knew someone who did. for example, some of the fathers had professional training in medicine or psychology or had extended family members who did. one of these fathers recalled noticing his son’s throat clearing and head flicking and his thought, “oh, my goodness…he’s got tourette's.” he then used his professional skills to begin adapting. he reviewed the professional literature and talked to his colleagues who were experts in the field. however, even those fathers who had the professional background to help them recognize what was happening still faced the emotional impact of a father confronting the fact that his child had a significant disorder. one of these fathers said, “i remember the day i diagnosed him, i mean, it was pretty painful. it was pretty, pretty emotional. he had been doing a lot of throat clearing. he was about .” as mentioned, other fathers agonized for a much longer time. for example, alex didn’t get his son randy diagnosed until he was in junior high school and only did so then because it “got to a point where he became completely incapacitated with his tics.” this diagnosis happened or years after the father first recognized his son had problems at the early age of or years. mckay recalled that his son gene exhibited what he called “little habits” as early as preschool and his preschool teachers tried to convince mckay and his wife that their son “was psychotic and that we should take him to get help.” by the time his son was five mckay knew that his son “wasn’t your typical, normal kid.” as the tics continued, mckay reported that he continued to be confused and didn’t know what to think of his son’s behaviors “i don’t know if that is normal but [i] didn’t know what it was.” even with all these concerns and frustrations, gene was not officially diagnosed until he was years old and in the sixth grade. although many of the fathers reported feeling distressed and concerned by the early unexpected manifestations of ts and comorbid conditions, they also reported feeling relieved in a way when their son was finally diagnosed. both lowell and his son gordon were relieved when gordon was diagnosed. through his tears gordon expressed his relief and sense of normalization when he learned of his diagnosis, “i am not crazy, i’m so not crazy.” lowell confirmed his own feelings following gordon’s diagnosis, “it was a great relief to know that there was a medical model that could classify his dysfunction.” he went on to explain, “we really didn’t know what tourette's [was]. he started making these odd noises all the time and, doing odd behavior all the time and so i didn’t really know what tourette's [was]. but i remember thinking at that time, this is a problem, but we will deal with the problem.” many fathers didn’t like the label handicap because of its negative connotations. london stated that one of his big fears was that his son chad was “going to feel like less of a person” as a result of his ts. after expressing this concern he showed his sensitivity towards this son when he said, “i don’t want him to feel less of a person.” brian, along with several others, didn’t want the words handicapped or disabled applied to his son because he thought those labels could be used as a crutch “especially if you tell them you can’t do that or you can’t, you know it’s a crutch we don’t use those, and i don’t think they're true.” all of the fathers interviewed recognized that ts created certain challenges and difficulties but they reported they were moving towards believing that overall it wouldn’t stop their sons from succeeding and doing what they wanted with their life. however many of them were still conflicted and waxed and waned in their thoughts and emotions about their son’s future. one father quantified his hope and belief, and perhaps addressed the uncertainty of many fathers, when he stated that his son could succeed, but only “if the tics stay down, he can go as far as he wants.” the following are a sampling of comments fathers made about whether or not their son should be considered normal or handicapped: i don’t “see it as a handicap the tourette's. i see it as an obstacle that he is going to overcome.” “i probably treated him more you know it sounds bad normal you know, this is something that you can certainly work through and it’s an obstacle that you can overcome.” “we’re all different, what’s nor[mal], would i consider myself normal? maybe a little goofy, a little quirky. i guess that’s a tough question to answer, i guess outside of the norm, … i guess if you’re functioning in society or in the community i would say you're, you're kind of, you know in that respect you're kind of meeting expectations, i don’t know how to answer that truthfully, i would say that alton, you know, is normal, you know the opening his mouth, or that, or he’s not normal, i wouldn’t say that i don’t know how to answer that truthfully.” “it is, it is disabling, you know. i mean that is the fact. … you know, we were all disabled.” “i have always considered him normal but when you use the word disabled, if i am honest about it, it was disabling.” i don’t “like the word handicap but it fits. i mean he was handicap[ped] by the tics.” “he couldn’t function … regardless of what we did.” theme two: pride a waxing and waning sense of pride was a major theme for the fathers in this study. one father reported an illustrative experience. he mentioned the pride he has felt in his son “i saw his tremendous ability, i thought, [he] is going to be a very successful kid and, you know, i was always very proud of him and i had high expectations for him,” and he talked about his doubts and disappointment. “i am having my serious doubts that he could achieve that kind of thing (obtain a college degree) because i am wondering if he is going to be able to be focused enough.” then the father’s pride began to rise again as he recounted that actually in college his son “didn’t do as bad as i thought he would do,” and then wane as disappointment crept back in “but he didn’t do as well as he could have done.” as his son’s symptoms waxed and waned, the father’s pride and his disappointment waxed and waned as well. as pride waxed stronger, disappointment waned, as disappointment waxed, pride waned. another father described waxing and waning sense of pride in his son. first he described the obvious pride he had for his son’s willingness to serve others, “he is so sweet and loving and he will do things for people, just, just to be a good person. he doesn’t expect a reward out of it.” then later the father expressed his frustration and disappointment in his son in family life at home because his son “doesn’t like to help here.” the following single line comment from the father london about his son who does his homework but doesn’t turn it in captures both his waxing pride in his son’s abilities and frustration and disappointment in his performance, “i guess our biggest frustration is knowing how smart he is.” the following are a couple of representative comments made by fathers about their growing pride in their sons: mckay’s son gene is an artist who enjoys drawing comic strips using a little t- rex dinosaur as his main character. mckay was visibly touched as he described the father’s day strip gene drew using one of their fishing trips as his inspiration. this panel showed a back view of “the dad dinosaur and the son dinosaur fishing,” the son dinosaur said, “the best thing about you is, is that you’re my dad.” mckay described his feelings of love and pride for his son this way, “it was just so cute, and, and you know to think that your son felt that way about you enough to draw it out…” lowell sums up the pride he has for his son gordon “… he might not be the perfect child as the world would call him, but he is definitely a perfect child…. i am glad he is my son.” this same feeling of pride and gratitude was felt by other fathers, as well. theme three: hope as was the case for many of the fathers, pride and disappointment in this case were closely connected to hope and fear. when this father felt rising pride in his son, he also experienced rising hope in his future; when he felt growing disappointment, he also experienced growing fear for his son’s future. this father reported feeling “saddened by the fact” that he and his son were not as close as he would like and that his son didn’t want to be around him that much. he reported further that, “i try to be positive whenever i am around him. i try to my best to be positive. but somehow it always works around to, you know, something that he needs to improve on.” to this point the father had not been able to come out of the troughs of disappointment and fear and reintegrate with gain to a solid sense of pride and hope. his fear and disappointment were creating secondary challenges to the father – son relationship, pushing his son away. in one telling exchange, the father told his son in frustration, “you have the capability to be a ceo at any company or you are going to be the smartest wal-mart cashier.” this was not an isolated example. fears were especially common early on when they were founded on inaccurate and misleading information and stereotypes such as thinking that his son would be shouting vulgarities for the rest of his life. many of the fathers wanted to believe in their sons but the reality was that as they watched them struggle it taxed the father’s belief that all would be well. london paid a compliment to his son’s ability, “he could do good at everything he does,” then adds a qualifier, “but he doesn’t try hard enough.” he expressed this same struggle between hope and fear, pride and disappointment again in a more poignant and blunt way, “he is a great kid but he is a kid who sees the finish line and stops.” the fears these fathers experienced were different for each of them, but the fears were real and they were challenged to learn how to deal with them. most of the fathers reported gaining some level of acceptance of their son and his challenges and some ability to develop hope in their son’s future. chase worried about kids picking on his son, and in fact kids did make fun of him. chase admits to being very protective of this son and hypersensitive to him. as time went on the tics waned and so did chase’s worry. the question remained, would his fear return if his son’s ts waxed again? when michael’s son dale turned michael lacked almost any hope at all and was extremely fearful for his son’s future. at that time, in michael’s words, “all hell broke loose.” he recalled how his son’s ts “went crazy. i mean hitting himself, [using] the f-word constantly. he couldn’t function in school, couldn’t make it through first period. literally [he] missed a year and one-half of school.” this dad went on to describe how through the th and th grade years dale’s tics got so bad that he had to go to the counselor’s office to tic. he would call [his mom]. he couldn’t even speak when he would call from school. he would be crying. he would be ticking. he would be screaming. he would be yelping. he would be twitching. he would be, ‘come get me, mom. i’ve got to come home’ …. there was no relief. i mean, there was no relief. … i mean, there was no real break even between the tics. [it was] life changing. two years later, dale’s tics waned and with that waning michael’s hope for his son began to wax. he knew that dale would always have some tics but he also began to have hope that they wouldn’t always be “life changing” or “debilitating” and he could “function in society” and not have to become a “recluse and stay in the house all day.” he began to hope even in the face of an uncertain future. while this was an extreme example, most of the fathers came to believe to some degree that their son had the potential to deal with ts effectively and to have some hope in a meaningful future as reflected in the following sample of comments: “there is no reason that tourette's should stop [him] from doing anything that he wants.” “he can do whatever he wants, this is not going to, hamper his future, that he’ll be able to pretty much take on whatever he wants to as far as schooling or career, or you know anything like that.” “in the real-life world, i think he will be able to function, he will be able to figure or cope.” theme four: acceptance another major theme in the fathers’ stories was their struggle with acceptance. for example, one father reported on how hard it was initially for him to accept that his son had ts. his first thought at the time of diagnosis was, “i didn’t want to deal with him as a son.” later, as this same father came to accept that he has three sons who have ts, he said i want … my kids to know it is not, it is not a disability. it is just something we have got to deal with just like putting your pants on every single day. you just do it. you deal with it. we’ll, we’ll fix it, we will make [it], we will, there is nothing we can’t accomplish. the tourette's is not going to be the defining factor of who they are. another father, chase, echoed the sentiments of many fathers about the difficulties they encountered before their son’s ts was diagnosed and the feeling that they were better able to move forward after receiving the diagnosis, “once we knew, i was able to accept it and deal with it and understand what his issues are.” the theme of acceptance also played out in connection with the guilt and fear fathers felt about the genetic component of ts. lowell expressed his waxing and waning guilt and fear for his sons’ future (he has more than one son with ts). i have had to come to grips with the idea that i have caused all this pain and suffering to my boys and it scares the hell out of me to think they are going to have children of their own and i do not want them feeling like i do … i have never told them that. i have never said anything about it because i don’t want them to know that is how i feel. i have had to come to grips and i still don’t think i have all the way. this father felt his guilt and fear wane as his ability to accept waxed and vice versa. he recognized that he was still in a growing process. responding with guilt created secondary challenges, such as the distancing that came from being unable to talk about something as significant as their shared genetic makeup. waxing levels of acceptance were part of his resilient reintegration and a step forward in his personal growth and in his relationship with his sons. anger was another common reaction reported by the fathers which waxed and waned with their ability to accept their son and his ts related issues. some directed their anger at their son, some towards others including family members, friends, and even strangers. lowell, for example admitted that “i love to yell” and reported yelling at his son’s teachers and even getting angry with the principal. he “got accused of bullying the principal” when he got mad at him for not doing enough to help protect his son. in fact, he told the principal, “do your job or get the hell out of it.” michael found it difficult to control his anger when adults (especially strangers) were rude or insensitive to his son. he reported that, “i have gotten angry at adults [a] lot and that is where emily (his wife) jumps in and saves me from going to jail.” he described a time when dale’s tics were at their worst and they were in a hardware store. the father lost his composure and just “about killed a guy in home depot” because he was making fun, he was an adult and he was making fun. dale was ticking and he couldn’t see us and he is yelling, “it is not broken.” ‘if it ain’t broken, shut up.’ i was going around the corner and told him i was going to do bad things. i grabbed him and i was literally, viscerally. i came this close to literally pummeling the guy. london spoke of his tendency to lose control of his temper and get angry and frustrated when dealing with his son’s school failures. like several other fathers, he reported that his son was capable and intelligent enough to get good grades and did very well on the tests, but he did not turn in his homework and as a result he failed his classes. “as a parent, i can’t accept it and i’m fiery and he got my wrath.” his response created secondary challenges and he and his son then had to deal not only with the son’s school problems but with dad’s anger as well. educational challenges created tension between many fathers and sons and the rest of the family. a common frustrating experience that seemed to cause a great difficulty for fathers was when the sons did not do their homework or did it and didn’t turn it in. these fathers were frustrated because they knew their sons had the ability to do well in school. cameron’s frustration with his son sherm was an example of the frustration many fathers experienced. cameron elaborated his frustration, “he can get good grades. he is in the accelerated … elp but, then he also will get c’s and d’s in the elp classes … you know, it is like, if he want[s], he does it.” he went on to explain that “this is a kid who gets % on his math test, who gets a c or d in math because he hasn’t turned in the assignments he has done.” sherm is on his school’s competitive math team that placed in regional competition. like many other fathers, chase came to realize that an angry response “just exacerbates the situation” and so he worked “to avoid that as much as possible.” he reported that learning more about ts and the difficulties commonly associated with it helped him become more accepting and deal more effectively with his son. not all fathers named anger as a personal challenge but they all reported feeling some level of frustration and stress about their son and his ts. they felt that through their ups and downs and over time, some more quickly than others, some more slowly, but all were learning to deal with the challenges in their own way as they navigated their journey. theme five: role satisfaction the fathers reported having had their share of ups and downs over the years in their ability to live up to their aspirations in their roles as fathers and husbands. they were very clear about the values by which they tried to live their lives and the goals they wished to attain in these areas, although, of course, as human beings they were not always entirely successful in living up to these ideals. overall however they reported growing satisfaction in these roles and a less pronounced pattern of waxing and waning than found around the other themes. role satisfaction as a father. the fathers in this study seemed to take their role as a father very seriously and expressed the belief that being a father “is a lot of responsibility.” their understanding of their role as father can be divided into three basic areas: ) provider, ) protector, and ) teacher. they spoke with a lot of depth about their sense of responsibility within each of these components and their realization that they were most successful when they worked as a team with their wife and relied on her expertise, talents, and abilities in raising their ts son as well as their other children. lowell summarizes the feelings of many fathers i have got an incredible wife, an incredible woman who reads me and knows me and knows how to settle me down. … we have a special relationship. i think it only comes with … years of being together and understanding that individual and, and not holding back, giving everything, you know. so we have a great relationship that way. role satisfaction as a father: provider. as a whole the fathers in this study felt responsible to provide in both tangible and intangible ways for their families. they reported believing that both of these were essential to ensuring a positive life journey for their sons with ts and their other children, as well as for themselves and their wives. the fathers recognized that a major part of being a father is to be “involved in making sure we have a roof and food and whatever else we need to survive as a family.” or, as another father said, “i see my role as a provider, ensuring that they have the necessities of life and then beyond some of that, some of the wants in life.” “i feel it is my responsibility to be the breadwinner.” fathers stressed that providing tangible support meant being involved “not just monetarily” but in other tangible ways as well. for example, this same father believed that his responsibility included providing opportunities for his son to learn more about himself by helping him explore different options such as scouting, athletics, drama, etc. while this involved a monetary commitment it required much more of the father such as time and energy. he felt that the rewards were well worth the expenditure because he was able to empower his son to develop strengths and find talents that he might not have found otherwise. providing these opportunities allowed the father to “mainstream him (his son) as much as possible.” fathers were tuned into the belief that a major responsibility was to be a provider for their children which included making “sure their needs are met in all three categories; physically, spiritually, and mentally.” several fathers expressed that one of their roles included creating “an environment in my family, and a relationship with each of my children and my wife where, they could be the, the very best that they can be.” cameron provided “a safe place” to live as well as “a safe place they can come home to” if they needed it. as one father put it, he was trying to create a home with “an atmosphere that gives them the best opportunity to succeed in their own personal lives. and, by that, runs the gamete from doing what i need to do to financially … so they have opportunities to do things that, they would like to be able to do. in addition to fostering an atmosphere where the kids, you know, want to excel academically, where they want to excel in their extracurricular activities.” the insight that these fathers shared about their role of provider was enlightening and encouraging. some of the intangible provisions that fathers mentioned included: “approachableness”; spending time with his children; sensitivity; and hope and belief. “i think he can do whatever he wants,” said one father, and then he added, “i didn’t feel that way all the time” which demonstrated the progression he had made in developing and sharing this quality with his son. one final form of intangible support these fathers mentioned was finding ways to support their son’s decisions, even when they were not what the father would have chosen himself. in the overall scheme of things what the fathers wanted to provide to their children was a “good solid base from which to spring from as they (their children) are adults.” or as another father said, it is “our responsibility as parents to make sure that they become better than you are, more successful … so i think that’s my responsibility overall.” cameron captured the thoughts expressed by most fathers as they described their ultimate role, “parenthood is an experience where you try and make yourself obsolete and hopefully end up where the people at the end, the adults that you raised still want to be around you but they don’t really need you.” the fathers reported waxing and waning in the accomplishment of these goals, but a very clear sense of the direction they were trying to go. role satisfaction as a father: protector. being a protector of their sons involved different connotations, feelings, meanings, and actions. for example, one father, mckay, believed that his responsibility included being a protector of his son and he wanted to accept this challenge but realistically he knew that “it’s hard sometimes when you, you feel you can’t protect your kid from this thing that’s just afflicting them.” his natural inclination as a protector was to be the “fixer of things” he can’t fix gene “i can’t, you know, pull out the duct tape or whatever and fix that problem, i can’t go to the hardware store and fix it, it just, it’s not fixable, and accepting that i think is hard …” he waxed and waned in his hope and belief vs. his fear and doubt. another father, michael, made a huge sacrifice in order to protect his son. dale was experiencing extremely severe tics and he was incapable of functioning in all areas of his life. in fact michael described this time as “every single day was hell.” he proceeded to describe what dale went through during th and th grades: those two years were hell and they were really hard… there was just no relief. i mean there was no. nothing could take away the pain and the difficulty he was going through. so, as a dad you want to fix him. before dale entered the th grade his tics began to wane. he wanted to act and applied to and was accepted by a special high school in his community that was geared towards the arts. dale started doing better in school and enjoying it more than he had ever in the past. his father, who is a clinical psychologist, was not earning enough money to adequately provide financially for his family and had the opportunity to explore a job out of state for a significant increase in salary. michael, along with his wife, made the decision to dip into his k and do “whatever we have to do to maybe stay right here until he is at least through high school. so, it is funny. it is a protective sort of mechanism for dale.” he went on to explain why the decision to stay was worth it to him, “but when you have been so intensely into that anxiety of the hell of th and th grade, you know, you do, part of it is normal to react and try to save him…” has it worked for dale? his father sheds some light on this decision, he is functioning so well. he has quality of life beyond quality of life. it is just, yeah, i mean tonight we are having a surprise birthday party for him. i think he is going to have or people that are going to be here. kids from his school. so, boy, there is a lot to be said for that after having gone through what we went through. i am a little, i am a little paranoid about getting thrown back into that. let’s say if we moved for example. another father, lowell, described himself as not being “a nurturing kind of person but immediately i thought, well, no matter what, i will protect him.” this father has three sons with ts and when asked how this condition impacted his life lowell’s response was filled with emotion. i think i am much more protective of my children with this tourette's because of this disability and, and i want people to understand that it is not, they are not freaks. they are not weirdoes. they are not, they are not making fun, you know when gordon repeats, they are not making fun. he wanted to protect his sons from the hardships he knew they would face but he recognized that this was not possible. while he lashed out at insensitive adults he expected his sons to fight their own battles if kids teased or harassed them. “i am a firm believer that if kids at school are pickin’ on him, they need to settle it. i am not going to come in and settle it for them. they either need to deal with it and settle it themselves ….” he knew that he “can’t beat up every high school bully or school bully or whatever you want to call it.” but he realized that as their protector he could help by teaching them to understand that “they don’t need to worry …. people can say and think what they want to say but what is really in your heart and what your real intentions are, there are only a few people who we need to make sure we satisfy and that is god, first and foremost.” another father, brian had a similar philosophy for his son alton, “sometimes it’s worse if you try to fight that battle for him … i don’t know if it’s necessarily that right way to handle it, i, our approach was more to kind of let him handle it and then let it play out and give him ideas and ways to handle that…” role satisfaction as a father: teacher. lowell showed his humorous side when he shared his belief about being a teacher for his children, “i think as a father i need to prepare them for life … and i laugh at my wife. i do everything i can to keep my kids out of the house and she does everything to keep my kids in the house.” while he was half joking he also described the belief that most of these fathers had about teaching and preparing their sons to survive on their own. his comment about his wife was an excellent example of the love, trust, security, and respect for the differences that he felt with her. a similar strong relationship with their wives was found in most of these fathers. these fathers understood the importance of and accepted their responsibility as a teacher and role model of core family values they wanted to instill in their children. teaching through example was perhaps the most significant method these fathers used to teach their son. each father emphasized those values that were important to him and his wife. some representative examples follow. one value emphasized by the fathers, not only by their words but also with their emotion, was the desire for their children to love and respect their mother. these fathers respected their wife and considered her as an equal partner with certain abilities that they didn’t have to ensure the children were raised properly and according to their family values. mckay was one of the fathers who verified this, i wanna be a strong example, a role model as far as, you know respecting their mother … you know be an example as far as how we want them to grow up with their values system, helping to teach them some of that … we joke a little bit about how, i need to teach ‘em how to be tough and laura will teach ‘em how to be soft, but i think we have a good mix there …. i’m a pretty sensitive guy too and i think it’s ok that they know that you can be a man and still be compassionate and sensitive and soft…. a different but humorous take on being a teacher for his son was shared by flint as he described his role, “my experience is kind of interesting because like i say, he is extremely bright, but i think like a lot of kids, of course he knows it all (laughing) and so getting him to understand that he doesn’t necessarily know quite as much as he thinks.” flint also has learned to be creative to “to get some … lessons across” to his son. several fathers emphasized the importance of teaching their son to be responsible. for example london was trying to teach his son “responsibility and accountability” in many facets of his life to help prepare him for the future. he included in this being “good parents and being good providers and to just the most important things in life, roles in our church and being good humans to each other. kind and service.” then he adds a caveat, “my kids get to do more service than they want to because i make them.” several fathers talked about trying to teach their sons to make good decisions because they understood the importance and value of this aspect of life. london realized that he had to let his sons make choices so they could “find out on their own. i give them a long leash until they really mess up and then … [i] yank back.” chase had a similar philosophy “we allow him to make his choices but he … can’t choose the consequences.” while chase believed this was important for his -year-old son he also admitted that it “has been a huge difficulty for me to overcome because i still want to be that protector.” other values mentioned frequently about which fathers felt strongly enough to take an active role in teaching their children were: spiritual values, contributing to society, developing character, honesty, integrity, a strong work ethic, love, and building relationships. the purpose of the fathers’ efforts was to help their sons prepare for life by being successful, productive citizens, future husbands, and fathers. they understood the challenges their boys face and will face as they move forward, but they have hope and belief in their sons. while this hope and belief waxed and waned over time, at the time of interview, these fathers tended to be more positive and hopeful than negative and despairing. role satisfaction as a father: special considerations about impact on other children. fathers wanted to teach all of their children the same core values, however, many fathers reported that having a son with ts took its toll on them and their relationships with their other children. many of the fathers indicated that they needed to spend more time and energy with their son with ts than the other children and in some instances this led to feelings of guilt and discouragement. one father presented an alternative perspective and didn’t think it took much more effort to raise his son with ts than his other children, perhaps “ten percent more because of that, you know talking in general terms.” as an example of fathers feeling torn between the needs of their son with ts and those of their other children, michael spoke of trying to help his daughter stephanie understand that her brother had serious issues and that as a dad he needed to spend extra time and energy with him. this father had to reassure stephanie that he didn’t “love dale more” than her. he continued describing his dilemma, “i don’t, you know, i love them all the same, but, dale at that time he needed … a lot of attention. so, i probably feel a little bit guilty about that but at the time we were just trying to survive.” this father was being sensitive to his young daughter’s needs as she was trying to cope with a brother who had a somewhat rare tourettic condition known as coprolalia which resulted in him uncontrollably using vulgar words which offended this year old sister. blurting out the ‘f-word’ also went against the family standards of appropriate language which caused confusion and frustration in this sister. as this father tried to help his young daughter understand what was happening to dale, he was acting in his roles of provider, protector, and teacher. he was providing sensitivity, love, and understanding, protecting her from herself and the condemnation she felt towards her brother, teaching her to accept her brother and his struggles. this father felt guilty because he felt he did not meet important needs of his youngest child at a time he felt he had to devote more time and energy to his son. his thoughts and emotions waxed and waned, up and down, as he struggled to balance the needs of his children. mckay admitted that his relationship with gene “impacts everybody” in the family. chase talked about the impact of his ts son on his other children they have certainly been aware of it because they have verbalized it. well, that is why ben gets all the attention because of this. and they have said that even at a very young age …. i think it has affected the relationship with the other children. maybe not in a huge way, but i think it has. clearly, having a son with ts can be difficult and impact the relationship of the father with his children, but fathers reported a sense that their family had learned to deal with the situation and make the best they can with it. this study indicates that the time and energy a father spends with his son can lead to a negative relationship with his other children. lowell, for example, believes the relationship that i have with them (his other children) is incredible and i think it is because of this tourette's, this disability, that i think i have something a little special with each of my kids including my daughters because of that, because they have had to accept and allow more leeway with these kids. he admits that developing this relationship hasn’t always been easy and that there were struggles and anger between the siblings and the father. the father describes a scenario in which his older daughter was angry with her brothers and this father jumped into the fight, “laura, you stay out of it, you know, they have got tourette's, leave them alone. you know, and her and i would get into, butt heads because of it. but, i think in the overall relationship … it has taught us as a family to pull together and not fight … when asked how having a son with ts impacted him and his family, alex summarized his feelings and in doing so provided an insight into the waxing and waning thoughts and feelings of many fathers in helping them (the other siblings) understand why he’s doing some of the things he’s doing, … that’s caused us as parents to have to have conversations with our other children that we wouldn’t have had if they wouldn’t of had tourette's and the associated challenges … it kind of forces a parent to be more patient … less controlling because the control just makes things worse, it doesn’t work, it doesn’t help, and so it forces a parent to change but then i’m a different parent for all my children, not just for him, so i think again, it makes me a better parent overall. but then the stress … when i’m worried about him, worried about what’s going on with him at school, worried about, is he taking care of himself, the things he’s most at risk for, that stress i think can then lower my resistance to deal with the other stress there is in the family, so that can put me more on edge … for the most part the fathers in this study recognized that having a son with ts did impact their relationship with their other children. these fathers were aware of this problem and they recognized that this was a problem which needed to be addressed and many have indeed put forth the effort to find a better balance. role satisfaction as a husband. another pattern which emerged in this research was satisfaction in fulfilling the role of a husband. although the fathers reported ups and downs in their marriage satisfaction over time, this was one of the areas which for these fathers was more constant. this may have been influenced by the fact that based on the criteria for inclusion in the study all of the fathers had long term marriages and had never been divorced. most of the fathers reported some conflict with their wife around dealing with their son with ts in addition to the other demands of ordinary life. however, overwhelmingly they reported that over time they and their wife had learned to work as a team and they greatly valued their wife’s strengths and the sense of fulfillment or satisfaction they got from their relationship. they recognized the importance of their role as a father in their son’s development and growth, but they also were quick to point out the contribution of their wife and expressed appreciation for what she did for their son with ts as well as for the other children. for example, several fathers talked about their satisfaction in working together as a team with their wife. alex recognized that he could not raise his son alone and revealed that he spent much time praying and looking for answers as to how and he and his wife could help randy be successful. flint and his wife took a team approach, worked on things together, and developed a proactive plan for handling problems that arose with their son, “we spent a lot of time talking about what ha[d] been going on and, i guess dual research into figuring out what the options were and what might happen,” and “we needed to deal with to make sure whatever impact it was going to have on christian long term, you know, we could be prepared to deal with that and get a jump on it early on. you know, hoping for the best.” lowell greatly appreciated that he could count on his wife to help him control his anger. he described his anger when a teacher was not providing help as prescribed in his son’s iep, “you need to be paying attention to what you are doing and so my first impulse is i get damn mad. i, i, i don’t like that. but, my wife usually hits me so i have to take a deep breath and take a time out and calm down and relax and then talk about it.” cameron was very sensitive to his wife’s relationship with their son with ts, sherm, who was challenging her authority. the father showed respect and appreciation for his wife by trying to teach his son the importance of respecting his mother. while london reported a very good relationship with his wife, there were frustrations with each other as well. he described how his son was good at playing the father and mother against each other. chase said “in some way it (a son with ts) has definitely affected our marriage relationship because we haven’t had the time or the energy. sometimes you are just too tired to work on your marriage because you are always focusing on ben with his problem.” but then he mentioned that as a couple they work hard “to make our relationship stronger” by addressing the “issues of our family instead of focusing on a couple.” discussion the results of this qualitative study cannot be generalized to others outside of this study population, however the current findings suggest some interesting directions for future research. research should be expanded to more diverse study populations including daughters with ts, mothers, siblings, and families in which there has been divorce and/or remarriage. also, future research should include fathers and other family members who are encountering high levels of stress due to factors other than the child with ts. quantitative studies should follow qualitative research to generate generalizable results. each father had his own unique challenges with and responses to his son with ts which impacted his relationships with this son, his other children, and his wife. these responses appeared to follow a waxing and waning pattern influenced by the nature of ts itself which is characterized by an unpredictable course of waxing and waning symptoms. as a whole however, these fathers appeared to be finding effective ways over time to develop strong family relationships. factors that seemed to propel these fathers forward included a clear understanding of and commitment to their roles as a father and husband, the successful development of a strong husband and wife team, and a deep love for their son with ts, their other children, and their wife. overall it was observed that the fathers in this limited study responded to disruptions from their son with ts in one of two ways: (a) with effective responses resulting in personal growth which helped lay a foundation for stronger, more positive relationships with their son and other family members, or (b) with ineffective response leading to the creation of additional challenges which introduced new difficulties and negatively impacted family relationships. the fathers’ waxing and waning pattern of responses in the face of an uncertain future occurred along five major themes: ) the question of their son’s normalcy, ) pride in their son, ) hope in his future, ) acceptance of their son, and ) satisfaction in the roles of father and husband. another perspective on the impact of having a son with ts came from cases which did not meet full selection criteria. one father, talmage, was interviewed before it was determined that he no longer met study criteria as he and his wife had gotten divorced. he reported that unresolved conflict and stress related to his son reagan’s ts had plagued the marriage and contributed to the dissolution of their -year marriage: i think just the overall stress of this kid made it very difficult for the two of us to have any, relax time at home around the kids. any kind of family outing was chronically affected by reagan. car, trips in the car, stopping every couple of miles trying to get reagan to stop beating on someone, stop screaming, stop doing something. staying in motels, you know, at night in the room trying to get him to stop carrying on. sitting out in the car with him for hours until he would finally get control. i mean … there was just, there was never any peace. that added to the fact that my wife was unwilling to kind of divide up. she always wanted to do everything as a group. that was really important to her and to me it was like, that is ridiculous, you know, nobody gets a break that way. so i think her insistence of that, took its toll and, and that i think was is one of many issues that turned into kind of a power play in between the two of us. she had, a kind of dominant role in so many things at home, and it eventually just, you know, i got to the point where i couldn’t live under those, conditions and as i began to challenge those things and confront her, it turned into a lot of conflict and eventually just, we quit. the father further reported that the ts-related stresses continued to impact the family even after the divorce. he observed that the son “figured out very quickly that he could split us. he could play us against each other very effectively.” the father’s sense of himself as a capable and effective father was impacted as well: i really expected (fatherhood) to be this, more kind of rosy, kind of a romantic experience where you love your kids and they love you back and everything is great. and there has been so much turmoil with him. i mean, there were times early on where i wasn’t sure i could, i was going to be able to survive being his father. and that, you know, one of us was going to have to go somehow somewhere. in another case, the father, shawn, had a great relationship with his son with ts and a strong marriage, but he did not meet the study criteria because he had too many other stressors in his life, including a wife with cancer and another son with pervasive developmental disorder. in spite of these additional stressors he appeared to be coping well. he talked about his role as a teacher, “i see my role as being an example of good choices, i fall short of that often but that’s my role.” he gave more insight into his values, “i’m trying to live up to, to be an example teacher, teaching respect for their mother probably first and foremost, teaching them responsibility, teaching them work ethic. i think it’s changed over time but more so helping them feel loved.” the results of this research suggest some directions for practical application. sharing the experiences of the fathers in this study with other fathers of sons with ts could increase their awareness of the positive potential of effective responses to primary challenges and the negative impact of ineffective responses which create secondary challenges. trainings could be developed to help fathers recognize and deal with the disruptions of primary challenges and prevent or minimize the more devastating secondary challenges. prevention programs could be developed for use in various settings such as clinical, educational, and occupational sites, etc. the results of this research may have applications for mothers and siblings of both boys and girls with ts as well as for their fathers. it may also be of benefit to families who have children with other chronic illnesses as well. in the last interview the researcher conducted, one father, brian, provided a beautiful overview of his thoughts, feelings, and philosophy of life about his role as a father. this expression of love and hope captured the ultimate rewards of fatherhood which was shared in some way by most of the fathers involved in this study. “you know when you look on your life and reflect on your life that, you know, your legacy is your family and your service and what you’ve done … i take it very serious its important and sometime you think you do ok, sometimes you second guess it a little bit.” while qualitative studies do not produce generalizable results, the findings of this study seem to be strong and consistent and are very likely to be very helpful in directing potentially powerful interventions for support and education of families with children who have tourette syndrome. it is my hope that quantitative studies will follow this research and produce statistically significant results that corroborate this study’s findings, however, in the meantime i strongly believe that such studies will likely find only minor differences in the results. such differences probably will not substantially alter the recommendations for developing training programs or the information shared in parental counseling. appendix a: selection criteria participating fathers were not selected if they were dealing with multiple significant life stressors other than having a son with ts because of the possibility that these other factors might have a major impact on their relationship with their son. for instance, conditions such as schizophrenia, pervasive developmental disorders, and other major medical illnesses are such significant stressors that these fathers were not included in this research. it would not be possible to distinguish the father’s reaction to having a son with ts from his reaction to these other very intense stressors (ferre, ). the focus was on sons because ts is more prevalent in males and studying only male children eliminated possible gender related differences in how fathers interacted with their child with ts. studying only sons who had had ts for at least - years was important as the length of a father’s experience with his son following the manifestation of ts may impact their relationship (ferre, ). the following selection criteria were used: ) the father has at least one son with ts. ) the father does not have ts himself. ) the father must be the biological father. ) the father is married to and has never divorced the mother of the son. ) the father lives in the same physical household as the son with ts. ) the father is experiencing no more than mild stress from life events as measured by a score of or less on the holmes and rahe social readjustment rating scale ( ). ) the son is between - years of age. ) the son has had ts for at least - years. ) the son has at least one biological sibling (i.e. is not an only child). ) the son and his siblings may not have any other major medical illnesses. ) the son and his siblings may not have a mood disorder nor rage attacks. ) the son and his siblings may not have schizophrenia or a pervasive developmental disorder (such as autistic disorder, asperger’s disorder, etc). appendix b: interview question guide below are the general questions that guided the interviews. the interviews began with the most general questions and the interviewers tried to encourage the fathers to tell their story in their own way. not all questions were asked of each father as frequently the fathers covered the relevant topics without direct questioning. research question # : from the perspective of fathers who have a son with tourette syndrome, how have they reacted to and coped with having a son with tourette’s? ) please tell me a bit about you and your family. how long have you been married? how many children? names and ages. your education and occupation. your wife’s education and occupation. ) how has having a son with tourette’s affected your life? ) how would you describe your son with ts? ) how would you describe the severity of your son’s tourette’s? ) when your son with ts was born – what were your hopes, dreams, and aspirations for this son? have they changed? if so, how? ) after your son began to exhibit some symptoms, but before he was diagnosed, what were your thoughts/feelings? ) when your son was first diagnosed with ts, what were your thoughts? fears? concerns? have they changed? if so, how? ) can you talk about any struggles your son with ts has had in school, your perceptions of his educational abilities, other interests/talents he has? ) do you know if your son tries to suppress his tics in certain situations? explain. ) do you talk with your son about ts? ) do you view your son with ts as being ‘disabled’ or ‘handicapped’ or ‘special’? please share your thoughts. ) how has having a son with ts impacted your relationship with your wife? ) how has having a son with ts impacted your relationship with your other child/children? ) has having a son with ts impacted other areas of your life? ) what are your biggest challenges with having a son with ts? and how do you cope? ) do your aspirations, hopes, and dreams for your son with ts differ from those you have for your children without tourette's? if so, how? ) do you think your social life is impacted as a result of having a son with ts? if so, how? research question # : how do fathers of sons with tourette syndrome understand their role in the family dynamics? ) how do you understand your role as a father? ) how do you think having a child with tourette's has impacted your family? ) how do you perceive your responsibilities as a father to your son with ts? ) are these perceptions and responsibilities different towards your son with ts verses your child/children without ts? how? ) describe the energy it takes to provide for the needs of your son with ts. ) how do you balance the needs of your son with ts and the needs of your other child/children? ) is the way you cope or discipline different in the home vs. out in the public? ) what are your thoughts about your son’s perceptions of you as a father? ) how do you cope with having a son with ts? references bagheri, m. m., kerbeshian, j., & burd, l. ( ). recognition and management of tourette's syndrome and tic disorders. american family physician, ( ). chowdhury u. ( ). tics and tourette syndrome, a handbook for parents and professionals. jessica kingsley publishers ltd. london. creswell, j. w. ( ). qualitative inquiry & research design: choosing among five approaches. thousands oaks, ca: sage. dick, b. ( ). grounded theory: a thumbnail sketch. retrieved / / . http://www.scu.edu.au/schools/gcm/ar/arp/grounded.html edell, b. h., motta, r. w. ( ). the emotional adjustment of children with tourette syndrome. the journal of psychology, ( ): - . fassinger, r. e. ( ). paradigms, praxis, problems, and promise: grounded theory in counseling psychology research. journal of counseling psychology ( ): - . ferre, r. c. ( ). personal communication, november , . ferre, r. c. ( ). personal communication, january , ). flach, f. ( ). resilience the power to bounce back when the going gets tough! hatherleigh press, new york, ny. haverkamp, b. e, & young, r. a. ( ). paradigms, purpose, and role of the literature: rationale for qualitative investigations. the counseling psychologist, ( ): - . hawley, j. s. ( ). pediatric tourette syndrome. http://emedicine.medscape.com/article/ -overview#a (updated: feb. , ). hbo documentary. ( ). i have tourette's but tourette's doesn't have me! aired december , . hendren, g. ( ). tourette syndrome: a new look at an old condition. journal of rehabilitation, ( ): - . holmes, t. h., & rahe, rh. ( ). the social readjustment rating scale. journal of psychosomatic research, , - . leckman j. f. ( ). tourette syndrome. lancet, : – . https://webmail.byu.edu/owa/redir.aspx?c= fe da b d bb c &url=http% a% f% fwww.scu.edu.au% fschools% fgcm% far% farp% fgrounded.html http://emedicine.medscape.com/article/ -overview#a morrow, s. l. ( ). quality and trustworthiness in qualitative research in counseling psychology. journal of counseling psychology, ( ): - . morrow, s. l. ). sampling procedures in qualitative research, class handout april , ). rennie, d. l ( ). grounded theory methodology: the pressing need for a coherent logic of justification. [electric version]. theory psychology, , - . ulin, p. r., robinson, e. t., & tolley, e. e. ( ). qualitative methods in public health: a field guide for applied research. san francisco: josey-bass. wilkinson, b. j., newman, m. b., shytle, r. d., silver, a. a., sanberg, p. r., & sheehan, d. ( ). family impact of tourette's syndrome. journal of child and family studies, ( ): - . woods, d. w., himle, m. b., & osmon, d. c. ( ). use of the impact on family scale in children with tic disorders: descriptive data, validity, and tic severity impact. child & family behavior therapy, ( ): - . zinner, s. h. ( ). tourette syndrome—much more than tics—moving beyond misconceptions to a diagnosis, pt . contemporary pediatrics ( ): - . chapter application of the metatheory of resilience and resiliency in families with children with tourette syndrome: waves one and two abstract families that have children with tourette syndrome are faced with significant medical issues and emotional, social, and cultural challenges. this theoretical paper examines the first two waves of resiliency inquiry described in the metatheory of resilience and resiliency and provides a framework for families and professionals to use in facilitating optimal functioning in families. the purpose of this paper is to: ) provide an overview of the challenges associated with tourette syndrome that create disruptions from the comfort zone; ) examine the first wave of resiliency research which identifies resilient qualities and how they can be utilized to optimize family functioning; ) explore the second wave of resiliency research, the processes through which families recognize and utilize their innate resilient qualities to grow stronger; and ) suggest ideas for identifying appropriate family nurturing and intervention points in the resiliency process. all families face adversity and must learn to adapt and surmount these challenges. growth or stagnation can be measured or predicted by how a family handles the chaos created by disruptions. resilient families recognize the chaos and turns it into a family strength. family resilience does not occur in a single experience, but develops through the family’s interactive processes as they learn to handle disruptions. the disruptions reported by the fathers fell into two main categories. some were created directly by the tourette's and related comorbidities, which were categorized as primary challenges. others, categorized as secondary challenges, were created by the fathers’ ineffective responses to the primary challenges. if fathers responded effectively to primary challenges they reintegrated resiliently with personal growth which laid a foundation for stronger, more positive relationships with their son and other family members. fathers who responded ineffectively experienced secondary challenges which created further difficulties and negatively impacted family relationships. a child’s tourette's is not what causes family dysfunction, but rather the outcome is dependent on the way family members react to their challenges and to each other. . resiliency is a process and resilient reintegration happens many times a day. with each new experience and challenge, families can become more skilled, knowledgeable, and experienced. introduction families that have children with tourette syndrome (fcts) are faced not only with significant medical issues but also with additional emotional, social, and cultural challenges (woods & marcks, ; hendren, ). this theoretical paper examines the first two waves of resiliency inquiry described in the metatheory of resilience and resiliency (mrr) (richardson, ) as a framework for families and helping professionals to use in facilitating optimal functioning in fcts. the mrr describes qualities, processes, and driving forces involved in resilient adaptation to stressors. most helping theories and methods can be housed under the umbrella of the mrr. popular and efficacious theories, such as self determination theory (ryan & deci, ), hardiness (kobasa, maddi, & kahn, ), and the construct of self-efficacy in social cognitive theory (bandura, ), can all find homes within the resilience and resiliency paradigms. purpose the purpose of this paper is to: ) provide an overview of the challenges associated with ts that create disruptions from the comfort zone; ) examine the first wave of resiliency research which is the identification of resilient qualities and how they can be utilized to optimize fcts functioning; ) explore the second wave of resiliency research, the resiliency processes through which families gain access to or recognize and utilize their innate resilient qualities to grow stronger and reintegrate with gain; and ) suggest ideas for application in identifying appropriate family nurturing and intervention points in the resiliency process. the third wave of resiliency research involves the family’s discovery of their energy, passion, and motivation for taking the journey towards fulfilling their potential and is beyond the scope of this paper. overview of ts-related disruptive challenges while all people have difficulties and life in general is not always easy, children with ts are susceptible to many unique difficulties, frustrations, and challenges. these trials can provide opportunities for personal growth and development, but they can also lead to frustration, social miseries, academic problems and much heartache (woods and marcks, ; hendren, ). children with ts are often misunderstood and subjected to teasing, bullying, and even to cruel jokes (chowdhury, ; hbo documentary, ). for the most part, society has little idea about what these children live with every day of their young lives. in turn, the challenges of these children can have a major impact on family dynamics and functioning and create distress and disruption in their lives. families are complex systems in which members are both independent and interdependent (dickstein, ). healthy or unhealthy interactions between members can impact overall family function as well as the development of each individual in the system. growth or stagnation of a family can be measured or predicted by how a family handles disruption and the chaos created by disruption. the resilient family recognizes the chaos and turns it into a family strength, which can change the nature of the family (flach, ). for example, in many fcts, the family may start to notice and experience disruptions when the symptoms first begin to manifest themselves, perhaps as early as in infancy, although more typically when their child is about years old (hawley, js. downloaded ). some parents may not even realize at first that these symptoms are not part of the normal developmental process. however, as tics develop, parents, as well as siblings if there are any, may become impatient or frustrated with the child and try to get him to stop ticking or change his behavior. this disruptive process may initially be perceived by the family as a simple problem that should be easily correctable simply by just telling the child to stop. over time, frustration may set in at what they perceive to be a willful disregard to their wishes. the disruption and ensuing chaos continue and may escalate as the child’s tourettic symptoms become more noticeable, as comorbidities reveal themselves, and all of these come to impact the family. zinner ( , pt. ) reports that parents often experience “incredible relief” when they eventually seek medical advice and their child receives a diagnosis. education about ts may assist the family in dealing more effectively with the situation. rosen’s study of family dynamics in fcts found that parental ability to accept things over which they have no control is particularly important to optimal family functioning. parents may face social, emotional, and physical stresses as a result of having a child with ts. ideally, parents need to find ways to effectively deal with the stigmas, impulsivity, obsessions, learning disabilities, etc. associated with their child’s tourette's and comorbidities. they need to help their family to accept, cope, function, and live independently and interdependently with these and all the other challenges that may arise as a result of having a touretter as a family member. the development of family resilience does not occur in a single experience, but rather develops through the family’s interactive processes over time as they learn to handle the disruptions that come their way (walsh, ). it seems reasonable to surmise that ts related disruptions can prompt a family to transition through the resiliency process and reintegrate into a stronger and more accepting and tolerant unit, or, on the other hand, such disruptions can contribute to a less functional family outcome. the first wave of resiliency inquiry: resilient qualities it has been said that the road to success is always under construction (anonymous). this is a perfect description of the journey that children with ts and their families travel as they go down the road called life. tourette syndrome is a lifelong condition with many challenges and bumps in the road (hawley, js. downloaded ). it seems likely that fcts will need to create new pathways as they learn to cope with and adapt to a myriad of problems related to ts and its comorbidities, such as the waxing and waning of tics, the impulsivity of adhd, and the frustrations of ocd. the development of resilient qualities identified by the first wave of resiliency inquiry as reviewed below may be helpful in their journey. resilient characteristics of individuals the first wave of resiliency inquiry emerged through the phenomenological identification of the characteristics of survivors, mostly young people, living in high risk situations. foundational studies cited in most of the phenomenological resilience literature identify qualities that predict the capacity to thrive in the face of personal and social challenge. the outcome of the first wave, which continues to this day, is the identification of resilient qualities. early work in the field drew on a variety of populations and used various methods to identify resilient qualities in young people (benson, ; garmezy, ; garmezy, masten, & tellegen, ; rutter, , ; werner ) these early researchers used longitudinal findings, epidemiological studies, children of schizophrenic parents, and a large study of th - th grade students in communities. the efforts of these men and women did much to identify resilient qualities in children and the results of their efforts helped trigger the positive psychology movement, which today is one of the most popular fields in psychology. this approach identifies the strengths, gifts, and talents of people rather than trying to identify and focus on their problems. professionals then build upon these strengths with the expected result of seeing individuals blossom and problems overcome. it is interesting that the most studied qualities in positive psychology are the same as those identified as resilient qualities. examples of resilient qualities studied in positive psychology include happiness, optimism, faith, self-determination, wisdom, creativity, self-control, gratitude, forgiveness, dreams, hope and humility among others. resilient family functioning research has shown that resilient qualities are crucial not only to individual functioning but to successful family functioning as well (walsh, ). individual members of a family system can face adversity and this adversity can have an impact on the family and create disruption to the family’s functionality. no family is immune to adversity and they must learn to adapt and surmount the challenges they face, otherwise a functional family can become dysfunctional. resilience allows families to face life’s challenges, survive adversity and then move forward with their goals and aspirations and do so with acquired qualities that will protect the family in future disruptions (bradshaw, ). walsh ( ) and simon ( ) point out the importance of honoring and not minimizing the family’s pain and problems while identifying and focusing on their strengths and resources. family resiliency enables the family to cultivate those positive strengths needed to help them face the challenges of their disruption (family resiliency: iowa state university). families emerging from adversity feel stronger and more confident after demonstrating their capacity to positively respond to a difficult situation (simon, murphy, smith, ). families who strengthen their abilities and learn to rebound from family crises are able to deal better with future challenges because they have gained resources that allow them to be more effective (walsh, ). resilient families are constantly weaving the social fabric of their familial society to strengthen and improve problem-solving, coping skills, positive support, openness, creativity, connectedness, etc., weaving a delicate but tightly knit structure made up of protective factors which lead to family resilience and survival (family resiliency: iowa state university). researchers have suggested various ways of grouping resilient qualities in families. for example, walsh ( ) developed a metaframework of family resiliency which focused on key family processes in three domains that reduce the risk of dysfunction, buffer stress, and encourage healing and growth from crisis. these domains are: . family belief systems, . organization patterns, and . communication processes (walsh, , ). patterson ( ) identified nine processes or strategies that strengthen families of children with disabilities: . balancing the illness with other family needs, . maintaining clear family boundaries, . developing communication competence, . attributing positive meaning to the situation, . maintaining family flexibility, . maintaining a commitment to the family as a unit, . engaging in active coping efforts, . maintaining social integration, and . developing collaborative relationships with professionals. the second wave of resiliency inquiry: resiliency the second wave of resiliency inquiry seeks to discover the process of attaining resilient qualities to illuminate “the process and experience of being disrupted by change, opportunities, adversity, stressors, challenges and, after some introspection, ultimately accessing innate resilience (gifts and strengths) to grow stronger through the disruption” (richardson, ). a detailed model was originally proposed by richardson, et al. in but has been modified many times since to help professionals and families better understand the process. communication has been improved by using easily understood terms such as “comfort zone” to replace terms such as “biopsychospiritual homeostasis” used in the original model. these terms are defined in table . just following figure . to provide clarity in interpreting the model. as seen in figure . , this model presents resiliency as a linear process in which individuals or families have the opportunity to grow as they respond to disruptive life events. resiliency mapping resiliency mapping helps increase families’ understanding of the processes involved in moving through crises and subsequent recovery. for example, use figure . to follow the course of a family and a child’s first manifestation of ts symptoms. prior to this manifestation the family was in the comfort zone, meaning that they were in a relatively stable, pre-crisis state. in this state they had settled into a pattern of functioning in major areas of life, such as their professional, home, social, and financial situation as well as to their physical state, mental capacities, and level of closeness to a source of spiritual strength. the child’s first manifestation of ts creates a challenge to life as usual and the family experiences a disruption. they may be expected to react with the normal emotions of hurt, loss, guilt, fear. etc. when the family is in this disruptive state, the helping professional may draw on the resiliency mapping model to help the family see and evaluate alternative outcomes. the model will highlight the potential for growth through resonation/quickening and identity formation, leading to the alternative resolutions of reintegrating with loss, or the potential for self-mastery and return to the comfort zone or resilient reintegration. some fcts may try to return to the same conditions they had before the disruption, but ts is a lifelong condition and a return to the pre-manifestation comfort figure . richardson’s resiliency mapping model table . . resiliency mapping model terms defined (richardson, ). comfort zone a familiar, relatively stable state of existence. in the comfort zone people may have little sense of being at risk for disruption, which may result in a false sense of security. disruptions planned or spontaneous events which cause a break or interruption in the normal cycle of daily life. such events may be minor or major with short or long term implications. resonation (quickening) the development of virtues and qualities that enhance personal capability and empower individuals to move through a trough. according to the resiliency mapping model there are three exit points from which to emerge: ) reintegration with loss; ) return to homeostasis (comfort zone); and ) resilient reintegration. self-mastery the development of personal strengths which occurs to the extent to which individuals take control of disruptions and accept responsibility for moving forward to resilient reintegration. reintegration with loss loss of personal strength that leads to coming out of a trough with a lower level of resiliency than before disruption. back to comfort zone a return to the previous level of functioning with little or no growth. resilient reintegration moving forward with growth or gain obtained during the process of going through disruptions. zone is truly impossible. others may become bitter, angry, and less functional than they were before the disruption, reintegrating with loss. the optimal outcome is for families to discover their inner strength, develop their skills, and resiliently reintegrate from life’s disruption. resiliency mapping can help the family recognize that they have some choice about which path they take. it can help them chart an effective path to potential growth as they progress through adversity towards resilient reintegration. as they do so, they will emerge stronger and more capable of living well with ts. resilient fcts will be able to recognize the challenges, accept them, make adjustments, and reintegrate with gain such that the family is stronger than it was at the time of the disruption. fcts who find themselves in resiliency troughs (see figure . ) often learn much about themselves as well as what is important in life. in the trough they can gain an understanding of who they are and how they are going to respond to disruptions. it is in the disruptive troughs of life that people discover ways to embrace the challenges they face. they find fulfillment in spite of potential limitations. they find alternative sources of strength which maximize their human condition. they discover their resiliency. while going through this journey, it is helpful for fcts to fully appreciate that ts is a lifetime condition that will be filled with many hopes and frustrations, dreams and setbacks, and constant challenges for the family as well as the child with ts. helping them to reflect upon times in the past when they have recovered with gain is an important boost to their ability to survive and thrive. the resiliency mapping model can be used to help them explore the process of living in the present while preparing for the future. ts specific mapping adaptations recurrent course of a single tourettic disruption while the model depicted in figure . accurately reflects the general principles of resiliency, the peaks and valleys in figure . represent the recurrent nature of the course of a single tic or ts-related disruption to the child with ts and the family. the course of a single tic tends to wax and wane with varying intensity and frequency for an unpredictable period of time. the peaks and valleys heading in the negative direction in figure . capture the recurring and additive nature of this repetitive course which, if not addressed and dealt with, can lead to reintegration with loss. multiple tourettic disruptions figure . further refines the representation of the challenges of fcts. the diagnostic criteria for ts require at least two motor tics and one verbal tic (dsm-iv-tr, , text revision) so every child with ts copes with multiple tics. figure . captures the waxing and waning of multiple tics to more realistically depict the challenges faced by the child and family. tics can happen separately or together or as a coordinated series of tics that must be done in the same sequence each time the child with ts has the urge to release that (hawley, js. downloaded ). in figure . superimposed on the bold arrows representing the basic resiliency model is a solid line representing a single tic and dotted arrows representing a combination of several tics. these tics may occur separately or together and each all of them can cause disruptions for the child and family. the frequency of tourettic tics may range from minimal occurrences that only manifest themselves during times of anxiety or fatigue to tics that occur as often as to times per minute (hendren, ). figure . ts-adapted resiliency mapping model: description of a family’s journey: single tic resilient fcts will need to accept and understand the waxing and waning and unpredictable course of ts, recognize how it impacts them, and take measures to counter the negative effects. both figures . and . show that even as the effects of ts and its co morbidities are constantly creating disruptions, the family’s adjustments can be headed in a positive direction. primary and secondary challenges the results of this researcher’s study of fathers who have sons with ts suggest a further refinement for a ts-adapted resiliency model (cazier). in this study it was noted that the disruptions reported by the fathers fell into two main categories. some disruptions were created directly by ts and its related comorbidities, which were categorized as primary challenges. others, categorized as secondary challenges, were created by the fathers’ ineffective responses to the primary challenges. there appeared to figure . ts resiliency mapping model: description of family’s journey: multiple tics be a cumulative or additive dimension to the fathers’ response patterns to these disruptions which led fathers to head down diverging paths. in this same study (cazier, ) it appeared that as the fathers processed their responses to primary challenges and reintegrated resiliently with personal growth they laid a foundation for building stronger, more positive relationships with their son with ts and other family members. on the other hand, as they struggled ineffectively and reintegrated with loss they experienced secondary challenges which created further difficulties and negatively impacted family relationships. consider a hypothetical example of a father who has an ineffective emotional reaction to a new experience with his son with ts. the new experience is the “primary challenge” and his ineffective emotional reaction would be his “secondary challenge.” let us assume that the son yells at his father after coming home from school angry because his teacher embarrassed him in front of the class due to a tourettic tic mimicking an animal sound. the teacher made him feel small and inferior and the other students picked up on the teacher’s remarks and feelings. the father’s primary challenge is his son’s angry outburst, which is a new experience with his son. if the father reacts to this challenge effectively and adapts and moves forward toward resolving the issue he will experience personal growth and develop greater strength to handle a similar situation should it occur again. if on the other hand the father adapts ineffectively, for example by becoming fearful of his son’s anger, then this fear would be a secondary challenge to the father. a further refinement of a ts-adapted rmm shown below helps depict the phenomena. the father begins the journey in a “comfort zone” with his relationship with his son. the primary challenge is the “disruption” (the son’s anger in this case scenario). the father enters a disruptive trough created by the primary challenge. an effective adaptation moves him past the former comfort zone towards resilient reintegration. the time and energy expended getting out of the trough promotes personal growth or strengthening of the father which will benefit him later when he encounters this or another primary challenge in the future. a secondary challenge is created when a father responds ineffectively and reintegrates with loss, creating a secondary challenge. in the example being used, this would be the father’s fear, which becomes the new disruption/secondary challenge. the ts specific adaptation of the rmm continues by addressing this challenge. a father may have an effective response to this challenge and reintegrate resiliently with gain or an ineffective response and once again reintegrate with loss in a downward spiral. see figure . for ts adapted rmm which accounts for secondary challenges. figure . ts adapted resiliency mapping model: accounting for secondary challenges a child’s ts is not what handicaps or causes dysfunction in the family, but rather the family’s outcome is dependent on the manner in which family members react to their challenges and to each other (havens ca. ). having a child with ts does not have to be catastrophic for the family system, the parents, siblings, or the child with the condition. all family members need to learn how to deal effectively with the situations that arise from having a child with ts in the family, and parents must be able to help not only the child with ts but also help the other children live and cope with this sibling (havens, ). proactively handling the disruption of ts, its waxing and waning nature, and associated comorbidities can strengthen the family and help it to become more resilient. according to tusaie and dyer ( ) resilience is not static but actually a dynamic process that parents should work to incorporate into their family system in an effort to help each member find a balance between protective and risk factors ( ). a prolonged journey with multiple and repeated disruptions takes significant time and adjustment. in the case of a fcts, disruption begins with the manifestation of tourettic tics, progresses through the demands for lifestyle and habit modifications over time, and optimally produces resilient reintegration as a family thriving in its own unique situation. discussion due to the ongoing nature of ts, helping professionals will have many opportunities along the way during which they can identify appropriate family nurturing and intervention points. they can be most helpful to families when they discuss the disruptive nature of ts and reintegration from attendant challenges with a broad view of health including not only the physical and medical, but also the social, emotional, and spiritual components. each person has many different roles in life and the helping professional may make inquiries regarding disruptions in all aspects of the family. in all likelihood, members of the family will be in different stages of the resiliency model depending upon their roles and available resources. resiliency truly is a process and resilient reintegrations can happen many times a day. with each new experience, new challenge, and new information families and helpers have the opportunity of becoming more skilled, knowledgeable, and experienced. repeated experiential disruptions can and should lead to increasing wisdom upon wisdom. conversely, some individuals and families may suffer repeated setbacks and become more helpless and discouraged with each disruption which leads to more decline. the concepts of resilience go beyond just the individual. resilient qualities and processes are evident in couples, families, organizations, and communities. it is clear that a positive relationship between people and helping professionals is vital in the healing process. families under stress from ts-related issues may have difficulties working effectively with helping professionals. understanding the resiliency process can help professionals take difficult situations and turn them into potential opportunities for growth through the application of the resiliency mapping model. resilience training itself can be a life event that triggers a disruption leading to resilient reintegration. families may come in contact with helping professionals and be open to resilience training at any time along the course of dealing with ts and its comorbidities. the disruption following the initial diagnosis may provide a unique opportunity for professionals to educate families about the resilience process and help them develop the skills to reintegrate resiliently with gain. references american psychiatric association. 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( , pt. ). tourette syndrome—much more than tics: moving beyond misconceptions to a diagnosis (first of two parts). contemporary pediatrics, ( ) - . chapter application of the metatheory of resilience and resiliency in families with children with tourette syndrome: wave three abstract this paper focuses on the theoretical application of the third wave of resiliency inquiry as it applies to families with children with tourette syndrome. this wave involves the identification of the energy, passion, and motivation that leads families along their resilient journey of living with tourette syndrome. it examines and defines the motivational forces which may drive their resilience. these forces include: essential resilience, childlike resilience, character resilience, noble resilience, ecological resilience, synergistic resilience, and universal resilience. helping professionals can facilitate resiliency by integrating the concepts of all three waves of resiliency inquiry, remembering that it is healthy to identify and pursue resilient qualities (first wave), to understand the processes of resiliency (second wave) and to access innate resilient drives to thrive (third wave). although tourette is a lifelong condition which waxes and wanes and has an unpredictable course, children with tourette and their families can experience enlightenment and a new identity as people functioning optimally for their situation – living their dreams. helping professionals can see the difference in the countenances of children with tourette and their families who have found peace with their condition and those who are still living in fear. parents can learn to appreciate their children with tourette while at the same time they can be frustrated and fear for their futures. most importantly they can develop hope. after forming a new identity that thrives through the challenge of tourette's, parents can learn about themselves and how to live and love with the challenges that are a constant to their children and families. helping professionals who work with the children with tourette, their parents, and families can benefit from knowing and applying the metatheory of resilience. understanding the resiliency process facilitates adaptation and optimization of life situations. it is good for everyone to reflect upon who they are, what their dreams may be, and changes to identities that will help all people become healthier and happier. introduction this paper focuses on the theoretical application of the third wave of the metatheory of resilience and resiliency (mrr) (richardson, ) to families with children with tourette syndrome (fcts). richardson ( ) defines resilience as “the motivational force within everyone that drives them to pursue wisdom, self-actualization, and altruism and to be in harmony with a spiritual source of strength” (p. ). postmodern multidisciplinary studies have identified several types of resilience such as: essential resilience, childlike resilience, character resilience, noble resilience, ecological resilience, synergistic resilience, and universal resilience (richardson & summerhays, ). each of these motivational forces generates energy that can aid an individual or family along the journey to resilience. each force has its own purpose and benefit in the building, enhancing, healing, and rehabilitation process. following a brief review of the first and second waves of resiliency inquiry, this paper will explore ways in which helping professionals may assist fcts in optimizing the use of these drives to foster healing and growth. the first and second waves of resiliency inquiry together all three waves of the mrr (richardson, ) provide a framework for examining how families and helping professionals can facilitate optimal functioning in fcts. cazier ( ) describes how the first and second waves may be applied to the journey of these families. briefly, the first wave of resiliency inquiry identifies resilient qualities that are crucial to the functioning of not only individuals but of families as well (walsh, ). the adversity of an individual family member with ts can create a disruption in the family and impact its functionality (chowdhury, ; hendren, ; woods & marcks, ). no family is immune to adversity and every family faces its own challenges. successful families need to learn how to adapt and surmount the challenges they encounter (flach, ). the second wave of resiliency inquiry moves from describing or identifying resilient qualities to understanding the processes involved (reich, zautra, & hal, ). richardson ( ) describes resilience as “the process and experience of being disrupted by change, opportunities, adversity, stressors, and challenges and, after some introspection, ultimately accessing innate resilience (gifts and strengths) to grow stronger through the disruption.” http://www.google.com/search?hl=en&sa=n&biw= &bih= &tbm=bks&q=inauthor:% john+w.+reich% &ei=awjitrkqnykisgkjoojgcg&ved= ccaq ag cg http://www.google.com/search?hl=en&sa=n&biw= &bih= &tbm=bks&q=inauthor:% john+w.+reich% &q=inauthor:% alex+zautra% &ei=awjitrkqnykisgkjoojgcg&ved= cceq ag cg http://www.google.com/search?hl=en&sa=n&biw= &bih= &tbm=bks&q=inauthor:% john+w.+reich% &q=inauthor:% alex+zautra% &q=inauthor:% john+stuart+hall% &ei=awjitrkqnykisgkjoojgcg&ved= cciq ag cg the third wave of resiliency inquiry the third wave of resiliency inquiry as it applies to fcts involves the identification of the energy, passion, and motivation that leads them through their trough of chaos and along their resilient journey of living with ts (richardson, ). helping professionals and the families themselves may benefit from asking, “what drives this particular family to move forward in the face of adversity?” “how do they find the strength to face the challenges of having a child with ts?” “where do they find their courage to move forward as productively and successfully as possible?” a theoretical examination of the motivational forces which may drive resilience in fcts is explored in the following sections. essential resilience essential resilience refers to the energy required to live and survive and is the most primitive and basic form of resilience. it is what drives us towards optimizing our lives and physical functioning. it is the inner strength that keeps enriching the body, the mind and the spirit. it is the energy, for example, that keeps a child with ts going instead of giving up and allowing ts to defeat him or her. understanding essential resilience helps professionals and families create optimal conditions for healing and promote the will not only to live, but to thrive. an integrated human soul can be sensitive to the yearnings and drives of the human physiology. people can learn to eat, sleep, and be active intuitively. for example, if people are not addicted to sugars, fats, and salts they can eat intuitively by listening to cravings for particular foods that provide needed nutrients to optimize physical functioning (tribole & resch, ). people who listen to the prompts that come from their bodies can sense when it is time to move and be active. individuals with ts frequently report that they have a premonitory urge that precedes a tic (leckman, ; singer, ). they may have an intuitive sense about their body’s need to tic, and they may listen when they feel a tic is about to manifest itself. at this point they can choose to release the tic as the body intuitively suggests, which temporarily relieves the inner tension in their body (jankovic, ; jimenez-shahed, ), or they may try to suppress it to avoid the possible stigma imposed by society. to suppress the tic results in pressure building in the person with ts which continues until the tic is released. releasing the tic occurs by letting it happen naturally. in this situation helping professionals may assist children with ts in optimizing their essential resilience by helping them explore the pros and cons of listening to their body and choosing whether or not to release their tics. helping professionals may also assist parents of children with ts in increasing their appreciation of their own intuitive awareness of their child’s struggles and will to conquer. these parents may sense that their child can overcome the difficulties they face as well as understand that the requisite energy or resilience may need to be nurtured and developed over time. parents can be encouraged to help their children with ts and other family members cultivate that energy known as essential resilience. childlike resilience childlike resilience is an innate energy-producing source within most people (richardson, ). while people may bury their childlike nature in the wake of pain and difficult life experiences, nevertheless this energy source can still be found deep within them. by reflecting upon one’s childlike nature one can sense the drive or yearning to have fun, to play, to be creative, to find humor and laugh, to be spontaneous, to take risks, to be genuine, to be curious, to be open, and to seek and enjoy pleasure. childlike resilient qualities can enhance and draw others near but these same qualities can create challenges when taken to the extreme. due to common comorbidities (bitsko, ; stephens & sandor, ) those with ts are frequently impulsive, which can contribute to a sense of fun loving humor and work to their benefit in creating positive experiences with others. however, this same spontaneous sense of humor can lead to hurt relationships if taken too far. for example, spontaneous funny comments may contribute to a fun interaction but if a child with ts doesn’t also know when to stop and keeps going on too long the humor may be lost and people could start to get annoyed. being overly spontaneous could create other problems such as jumping to wrong conclusions and then taking hurtful or poorly conceived action. helping professionals can assist children with ts and their families understand and work to maximize the benefits of childlike resiliency while minimizing damage to relationships from being overly impulsive. character resilience character resilience comes from the desire to live within a moral framework and entails having the ability and desire to learn from our mistakes, make adaptations in our behavior, change our attitudes, and resolve difficulties. in other words, this type of resilience encourages positive action by using concepts such as integrity, honesty, trustworthiness, kindness, self-regulation, hope, and spirituality. these qualities allow us to live a life that is consistent with our personal, family, and community values that strengthen us rather than weaken us. character strengths contribute to life satisfaction and fulfillment (seligman, steen, park, & peterson, ). children with ts and their families can be encouraged by helping professionals to explore their own moral framework to increase their sense of personal satisfaction. these principles carry across cultures, genders, and the life span. a sense of freedom and energy result when living within one’s chosen character qualities. when people step outside their character code, the result is a feeling of guilt and regret. guilt is an energy drain and compromises the healing process. helping professionals can encourage patients to seek counselors or clergy to facilitate a self-forgiving experience. a study of posttraumatic growth and strengthening character concluded that a person’s character may grow as a result of experiencing trauma (peterson, park, pole, d’andrea, & seligman. ). children with ts and their families face many difficulties, some of which may be traumatic, others may be less intense. having difficulty fitting in, being teased and bullied are common stressors for children with ts and their families (bruun, cohen, & leckman, ; chowdhury, ) which may make it all the more important for helping professionals to assist them in actively clarifying their own belief system and moral code and developing the strength which comes from character resilience. noble resilience noble resilience is the yearning and drive to feel valued and important. self- esteem, self-efficacy, and self-worth all reflect noble resilience. feeling good about oneself is generally a product of having a purpose and meaning in life. where noble resilience is the desire to acquire feelings of worth, it is acting on the noble drive for altruism and service that leads to feeling important. when people perform acts of kindness and service to others, the validation of goodness comes from external sources. wise helping professionals can encourage their patients to be involved in meaningful acts of service. likewise, parents of children with ts can provide opportunities for their children as individuals and with their families as a whole to give service. ecological resilience ecological resilience is the drive to connect with energy from one’s surroundings. walsh ( ) believes that over a lifetime there are many spheres in our surroundings that influence resiliency such as: family, friends, culture, school, religion, and so forth. the interplay of these spheres can lead the child with ts to either thrive and survive resiliently or retreat in fear and despair. walsh ( ) said, “it is not enough to bolster the resilience of at-risk children and families so that they can ‘beat the odds’; we must also strive to change the odds against them” (p. ). candace pert ( ) describes how vibrations that come from nature activate neuropeptides in the body. the receptive neuropeptides connect with receptors in the cells and send messages through the vibrations. soft, life enriching, and healing vibrations come from natural settings. plant therapy (van den berg, & custers, ), pet therapy (barker, & dawson, ), music therapy (field, et al. ; montello, & coons, ), and other sources of soothing vibrations may help fcts to thrive even as they struggle with adversity. helping professionals and parents can help create nurturing ecosystems around fcts that facilitate optimal growth and healing. ts is a neurological disorder and strong ecological sources of strength may help children with ts rebound from their own internal neurological struggles as well as help them and their families heal and move past the negative reactions of others and the frustrations of societal misunderstanding. synergistic resilience synergistic resilience is the yearning and drive to connect with others. the drive to connect is in essence love. the most effective helping professionals may be those who make connections with their patients (rakel, et al. ). helping professionals can also help create situations for family and friends to make connections with and thereby promote the well-being of children with ts and their family members. as loved ones speak optimistically, instill hope, and generate courage in patients, the resilient qualities will emerge which, according to the field of psychoneuroimmunology, will help fortify the immune system (richardson, ). tics may prompt children with ts to do things which may be socially unacceptable or annoying to others, such as odd facial grimaces, irritating noises at inappropriate times, shoulder or leg tics which cause them to bump others, etc. such tics may interfere with the desire for positive connection with others and impede synergistic resilience. helping professionals can assess the needs of each individual child and family member and assist in creating effective interventions, such as educating peers, family, school personnel and others in the community. universal resilience universal resilience is the yearning and drive to connect to a strength, power, and energy beyond normal capacity. studies have demonstrated that faith facilitates healing and rehabilitation (richardson, ). as in the general population, many fcts are likely to believe in some form of deity, but spirituality does not have to be linked to any specific religion or belief system. helping professionals working with fcts can educate them about the vast wisdom of the collective unconscious mind which reflects a universal wisdom, or about string theory which describes how everything is connected to everything else, or about other forms of theoretical physics that suggests that we are walking in, breathing in, and literally part of an energy field (greene, ). fcts can be assisted in exploring spiritual connections and find those that they feel comfortable with which can act as a foundation or moral compass to guide the family through the challenges they face not only with the ts but with other challenges in life as well. integrative health modalities may provide the techniques and skills a family needs to access peace, energy, and comfort from a higher power. helping professionals can help children with ts and their families connect with strengths beyond their own by encouraging practices such as meditation, tai chi, yoga, prayer, music therapy, journaling, and other evidenced based techniques and skills. integrating resilient qualities, resiliency, and resilience helping professionals can find many points at which to positively influence children with ts and their families. they can facilitate resiliency by integrating the concepts of all three waves of resiliency inquiry, remembering that it is healthy to identify and pursue resilient qualities (first wave), to understand the processes of resiliency (second wave) and to access innate resilient drives to thrive (third wave). life dreams fcts can be encouraged to reflect upon whom they really are and how this connects with their childlike, noble, character, ecological, and universal drives. physical limitations do not need to prevent these drives from being fulfilled. it is through the sensitivity of the resilient yearnings that one can formulate a dream for life. a dream is a vision of what a person’s world will look like fulfilling the drives within whatever limitations exist. disruptions can occur from being blindsided by life events or from taking leaps of faith into new adventures. whatever the impetus, the resulting disruption may be accompanied by feelings of disorientation, hurt, loss, guilt and fear. the sensitive helping professional will recognize and respond to the fear, the hurt and other painful emotions. often it will be when children with ts and their families are at a low point that they are in the right state of mind and heart to experience infusions of resilient qualities. sources of strength the language of the universe is in the form of vibrations (richardson, ). as fcts seek a source of strength beyond their normal capacity they may receive insights, peace, and acceptance that will help them thrive. the source of the qualities will vary among patients. for example some patients may believe in qi energy from the eastern healing professions. some may believe in the power of the collective unconscious mind which brings the wisdom of the ages to their consciousness. some may believe in god’s spirit that can bless them if they have faith. in the resiliency mapping model described by richardson and summerhays ( ) disruptive events precipitate a drop into the bottom of the resiliency trough which can bring about the possibility of experiencing insights, enlightenment, peace, and acceptance. fcts may seek their source of strength through practices such as meditation, prayer, and mindfulness in attempt to resonate to desired resilient qualities. when gestalts, inspiration, energy, hope, and optimism come, they will receive an infusion of the qualities. helping professionals can see the difference in the countenances of children with ts and their families who have found peace with their condition and those who are still living in fear. new identity the outcome of enlightenment in the trough is often a vision of a new identity for the children and their families. they may see themselves with more hope, confidence, and vigor. the new identity may be more compliant. the new identity may listen to intuitive senses and eat, move, rest, and even tic accordingly. although ts is a lifelong condition which waxes and wanes and has an unpredictable course, children with ts and their families can experience enlightenment and a new identity as people functioning optimally for their situation – living their dreams. with the new identity in mind, helping professionals can act as coaches to promote self-mastery from within. the concept of self-mastery includes persistence, the refusal to quit when faced with adversity, and prudence, the use of reasoning and self- management in the new identity. constant disruptions are frequently the norm for children with ts, their families, and all those with whom they have relationships. helping professionals can assist those with ts in developing the noble energies of self- esteem and self-efficacy in the lifelong quest to master themselves and the disruptions inherent in living with ts. establishing a work ethic designed to motivate and direct the family out of the chaos of disruptions can also help. concepts of self other “self” concepts include self-regulation, self-discipline, self-determination and self-control, which essentially describe the ability to override primitive thoughts and behaviors and work toward wise outcomes. these can present special challenges for children with ts and their families as the children face vocal and movement tics which seem to fly in the face of such concepts. for example, although coprolalia is quite rare, present in only about % of those with ts (singer, ), children with ts who have coprolalia may have difficulty feeling that they have any of these self-control qualities when through their uncontrollable tics they produce vocal noises such as screams, animal sounds, vulgar or otherwise inappropriate words shouted out loud, etc. no matter how strongly children with ts want to exercise self-control with regards to tourettic tics, they must let them out sooner or later (woods et al., ). comorbidities common with ts, such as ocd or adhd, likewise may be controlled to a certain extent with medication and training, but in reality the children with these comorbid conditions will struggle with the effects for life. nevertheless, they do not have to stay trapped in the disruptive trough but rather they can learn to live with, struggle with, and adapt to the thoughts and behaviors associated with these conditions. helping professionals can assist children with ts and their families in developing the noble energies of self-esteem and self-efficacy as they learn to live with and accept the disruptions associated with ts. self-mastery also includes faith in one’s ability to accomplish goals and develop a new identity. self-mastery may include faith to accomplish with the help of a universal resilient strength. helping professionals can encourage fcts to believe in their children with ts, to have hope in their ability to live well with ts and its associated comorbidities and accomplish their dreams. such families can learn to recognize the struggles their children with ts face and support them as they work to develop the resilience to get out of disruptive troughs, never giving up or accepting defeat. they can learn to work hard to develop and incorporate faith and religious guidelines and morals to anchor their families and serve as a family compass for right and wrong, love and appreciation, acceptance and tolerance, and family love, support, and togetherness. they may face many unknowns, suffer embarrassment and frustration, but never give up on their children with ts. this is part of the universal energy that they can depend on to lead their families along the journey filled with constant challenges. resilient reintegration the final stage of the resiliency process is resilient reintegration which also reflects wisdom. as helping professionals assist parents in learning more about ts and its effects on their children, parents and children alike can work towards reintegrating with resilience. fcts can learn to appreciate the benefits they receive from having a child with ts in the family. some of the benefits may include developing patience, improved relationship and appreciation between parents, tolerance, and gratitude for a child who has ts rather than some other challenge that could be worse. parents can learn to appreciate their children with ts while at the same time they can be frustrated and fear for their futures. most importantly they can develop hope. after forming a new identity that thrives through the challenge of ts, parents can learn about themselves and how to live and love with the challenges that are a constant to their children and families. recognizing and accepting the challenges, working to live within their parameters, experiencing growth associated with this challenge, and recognizing the accomplishments of the family is part of resilient reintegration. parents and children alike can reflect upon lessons learned and apply those to future disruptions. the resilient quality of appreciation is a reflection of that wisdom. discussion helping professionals who work with the children with ts, their parents, and families can benefit from knowing and applying the metatheory of resilience. understanding the resiliency process facilitates adaptation and optimization of life situations. upon reflection, helping professionals may realize that they not only experience the resiliency process as they work with families, but also when dealing with their own personal and professional challenges. it is good for everyone to reflect upon who they are, what their dreams may be, and changes to identities that will help all people become healthier and happier. references barker, s. b. & dawson, k. s. 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( ). controlled evaluation of an educational intervention used to modify peer attitudes and behavior toward persons with tourette’s syndrome. behavior modification, ( ): - . http://www.google.com/search?hl=en&sa=n&biw= &bih= &tbm=bks&q=inauthor:% john+w.+reich% &ei=awjitrkqnykisgkjoojgcg&ved= ccaq ag cg http://www.google.com/search?hl=en&sa=n&biw= &bih= &tbm=bks&q=inauthor:% john+w.+reich% &q=inauthor:% alex+zautra% &ei=awjitrkqnykisgkjoojgcg&ved= cceq ag cg http://www.google.com/search?hl=en&sa=n&biw= &bih= &tbm=bks&q=inauthor:% john+w.+reich% &q=inauthor:% alex+zautra% &q=inauthor:% john+stuart+hall% &ei=awjitrkqnykisgkjoojgcg&ved= cciq ag cg http://health.utah.gov/obesity/documents/richardson.% downloaded% / / http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstract&term=% stephens+rj% % bauthor% d http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&itool=pubmed_abstract&term=% sandor+p% % bauthor% d chapter conclusion review of findings two research questions guided this study: ) how do fathers cope with sons who have tourette syndrome (ts); and ) how does this impact the family dynamics? the main finding of this study is that fathers showed an overall pattern of response to having a son with ts which seemed influenced by the nature of ts itself. ts is a lifelong disorder whose symptoms wax and wane over an unpredictable course (bagheri, kerbeshian, & burd, ; leckman, ; chowdhury, u. ; edell, & motta, ). the fathers in this study experienced the unpredictable waxing and waning their sons’ symptoms and responded in a waxing and waning pattern of their own as they accompanied their sons along a path filled with uncertainty about the course ahead. these fathers faced all of the normal and expected challenges that other fathers experience raising their children in addition to the unique challenges influenced by the intrinsic nature of ts itself. early in the data analysis process the researcher noted that many of the fathers’ stories contained elements that seemed to fit into theories of resiliency. chapters and outline the theoretical application of richardson’s metatheory of resilience and resiliency (mrr) ( ) to families that have children with ts. these two chapters provide a ts-adapted theoretical framework that describes qualities, processes, and driving forces involved in resilient response to stressors. the resiliency mapping model (rmm) introduced in chapters and did not fully explain the father’s response to the ts-related course of disruptions. based on the data gathered in this study, richardson’s resiliency model was adapted to explain this difference in chapter . the ts-related disruptions reported by the fathers fell into two main categories. some disruptions were created directly by their son’s ts and its related comorbidities and were categorized as primary challenges. others were created by the fathers’ ineffective responses to the primary challenges and were categorized as secondary challenges. primary challenges are life events/stimuli that are related to the son’s ts and/or comorbidities which impact the father either directly or indirectly. if a father reacts effectively to a primary challenge he experiences personal growth and an increase in resiliency. if on the other hand he reacts with an ineffective response he creates a secondary challenge which takes him into a new disruptive trough which he and his family must now go through in addition to facing the original primary challenge. creating one secondary challenge can lead to an iterative process in which there is a downward spiral of disruptions and ineffective responses. every father’s story outlined his own issues with his ts son that was part of his life and challenge of being a father. although there were similarities between the fathers, each was uniquely challenged to develop his personal strengths in response to the waxing and waning and unpredictable course associated with his particular son’s ts. the pattern of waxing and waning responses in the face of an uncertain future occurred along five major themes: ) the question of normalcy, ) pride in son, ) hope in the future, ) acceptance, and ) role satisfaction. fathers reported experiences along a continuum of success, ranging from effective responses which seemed to lead to personal growth and resilience and stronger relationships with his son and family, to ineffective responses, difficulty developing personally, and relationship strain or deterioration. the level of personal growth and resilience appeared to lay the foundation for and give direction to the developing relationships. fathers reported that as they became more knowledgeable about and experienced with the course of ts, they learned to recognize the waxing and waning of their son’s symptoms. the fathers themselves experienced a waxing and waning course of thoughts and feelings in response to their sons’ struggles with ts-related issues along an unpredictable course. for example, many of the fathers reported a waxing and waning sense of confidence and pride in their son with ts, sometimes having bursts of confidence and pride and at other times becoming fearful that their son would never be able to live a normal life. suggestions for future research as with all qualitative research the results of this study cannot be generalized, however this research does provide introductory insights into the lives of these fathers, their relationships with their sons who have ts and the impact on the family. the knowledge gained from this study can be transferred (marshall & rossman, ) and used as a foundation for a larger quantitative study involving a broader and more diverse demographic population. the fathers in this study had sons who had had ts for at least years and the fathers were asked to retrospectively share their thoughts and feelings back to the time when they first noticed their son’s ts symptoms. although many fathers had clear and powerful memories of these events, others could not remember pertinent details which could have shed a new or different light on this research. additional research should be done which captures this data closer to the time of occurrence. ts is much more common in boys than girls and the study population of this exploratory qualitative study was limited to fathers who have a son with ts. additional studies should be done to examine the possible differences between sons and daughters. based on participant selection criteria of the study participants all were men in long term marriages to their son’s biological mother. further research should explore potential differences between this population and ones with more diverse family structures, such as families in which there has been a divorce, single parent families, blended families, etc. although there has been more research focused on mothers that data is still limited and more should be done. while qualitative studies do not produce generalizable results, the findings of this study seem to be strong and consistent and are very likely to be helpful in directing potentially powerful interventions for support and education of families with children who have ts. it is my hope that quantitative studies will follow this research and produce statistically significant results that corroborate this study’s findings, however, i strongly believe that such studies will likely support the major findings of this research. references bagheri, m. m., kerbeshian, j., & burd, l. ( ). recognition and management of tourette's syndrome and tic disorders. american family physician, ( ). chowdhury, u. ( ). tics and tourette syndrome a handbook for parents and professionals. jessica kingsley publishers, london. edell, b. h., & motta, r. w. ( ). the emotional adjustment of children with tourette syndrome. the journal of psychology, ( ): - . leckman, j. f. ( ). tourette syndrome. lancet, : – . marshall, c., & rossman, gb. ( ). designing qualitative research, th edition. sage publications, thousand oaks, ca. richardson, g. e. ( ) the metatheory of resilience and resiliency, journal of clinical psychology., ( ), pp. - . seligman, m., & darling, r. b. ( ). ordinary families, special children a systems approach to childhood disability. second edition. the guilford press. new york. wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ microsoft word - mjh- deniz pamuk.docx mediterranean journal of humanities mjh. akdeniz. edu. tr v/ ( ) - yaşlı bireylerin yaşamında evcil hayvanların rolü the role of pets in the lives of older people deniz pamuk Öz: İnsanlar ile hayvanlar arasındaki ilişkiler oldukça eskilere dayanmaktadır. Özellikle evcil hayvan sahipliği ve evcil hayvan terapisi gibi uygulamalar günümüzde bireylerin iyilik hali açısından evcil hayvanları daha önemli bir konuma getirmektedir. evcil hayvanların bu işlevi, özellikle yaşlılık konu- sunda da büyük öneme sahiptir. bu çalışmada da, evcil hayvanların gündelik yaşam, bakım hizmetleri ve kayıp süreci açısından yaşlı bireylerin yaşamındaki rolü üzerinde durulması amaçlanmıştır. sosyal ağların azaldığı, yakın çevrenin ve özellikle sevilen kişilerin kaybı ve çeşitli sağlık sorunlarının en yoğun ortaya çıktığı dönem olan yaşlılıkta, evcil hayvanların hem kurumsal hizmet hem de gündelik yaşam açısından faydaları oldukça fazladır. bununla beraber bakım kurumları dışında yaşayan yaşlı bireylere de sosyal destek ve daha fazla hareket imkanı sağlamaktadırlar. Önemli bir diğer nokta ise, evcil hayvan sahipleri- nin evcil hayvanları ile kurdukları duygusal bağlar ve hayvanın kaybı ile ortaya çıkacak yas sürecidir. di- ğer kayıp biçimlerinden farklı olan evcil hayvan kaybının farkında olmak, yaşlı bireylerin bu süreci atlat- malarında sunulacak hizmetler açısından da daha faydalı olacaktır. anahtar sözcükler: evcil hayvan destekli terapi, evcil hayvan sahipliği, yaşlılık, yaşlı bakımı abstract: the relation between human and animals is very old. today, practices such as pet ownership and pet therapy bring pets into significant positions in relation to the well-being of people. the role of pets are particularly important in the case of aging. this study explores the role of pets in terms of everyday life, care services and mourning processes within the lives of older people. in old age, through the loss of social networks and loved ones, and also the period when health problems increases, there are many benefits brought by pets to both institutional services and everyday life. in addition to these, pet ownership provides opportunities for reaching social support and improving the level of physical activity level of older people. other important points to mention are the bond that an older person forms with his pet, and the mourning which occurs during the period of bereavement of the pet. being aware of the loss of the pet, differing from other types of loss, will be beneficial in terms of the services provided to older adults, to be able to overcome this process. keywords: animal-assisted therapy, pet ownership, aging, older care İnsanlar ve hayvanlar arasındaki ilişkilerin tarihi oldukça eskilere dayanmaktadır. tarım toplu- muna bakıldığında, insanların kendilerine arkadaşlık etmesi için vahşi hayvanları evcilleştirdiği görülmüştür (savishinksky ). bunun yanında, arkeolojik çalışmalarda, bir mezarda karşıla- şılan yavru bir köpeğe sarılı insan fosili, insanlar ile hayvanlar arasındaki ilişkinin yalnızca beslenmeye yönelik değil, aynı zamanda sevgiye dayalı olduğunu da (davis & valla ) göstermektedir (akt. o’haire , ). miladi tarihten orta Çağ’a dek evcil hayvan olarak özellikle köpekler kiliseleri korumak, avlanmaya yardımcı olmak gibi işlevleri sürdürürken (mery ); rönesans ile birlikte insanların yaşamında arkadaşlık rolleri artmış ve . yüzyıl-  m.a., akdeniz Üniversitesi, gerontoloji bölümü, antalya. dnzpmk@gmail.com doi: . /mjh. geliş tarihi: . . kabul tarihi: . . deniz pamuk dan itibaren evcil hayvan sahipliği bir moda halini almıştır. Özellikle özel ırklardan köpeklerin yetiştirilmesi . yüzyılda üst sınıftan kimseler tarafından refah ve statü sembolü olarak görül- meye başlamıştır. aynı süreçte, orta ve alt sınıftaki kimseler ise çobanlık, avlanma ve koruma amacıyla köpekleri kullanmaya devam etmiştir (plemons ). almanya’daki türkler’in evcil hayvan sahipliğine ilişkin hazırlanan bir çalışmaya göre (Çağlar ), ’lı yıllardan itibaren türk göçmenler, alman toplumuna uzak olmayan evcil hayvan sahipliğini, özellikle insani ilişkilerde gerekli bir boyut ve uyumun şartı olarak kabul etmeye ve benimsemeye başlamıştır. buna paralel şekilde, türkiye’nin büyük illerinde de evcil hayvan olarak köpeklere karşı olan ilgi artmıştır. söz konusu durum, çoktan evcil hayvan sahipliğine alışkın olan üst sınıfın haricinde, yeni bir sınıf ve kültürün oluşmasına neden olmuş- tur (bourdieu ; Çağlar ). netice olarak, hayvanların fonksiyonu zaman içerisinde av- lanma arkadaşından çekirdek ailenin bir parçası, bir dost ve dahası sosyal statü kaynağı haline dönüşmüştür (plemons ). günümüzde de, insanlar ve hayvanlar arasındaki bu ilişki devam etmektedir. Özellikle, evcil hayvanlar, bireyler tarafından sunulan bakım ve ilgiye istekle karşı- lık vermekte; önemli bir insani ihtiyaç olan koşulsuz sevgiyi ve fiziksel temas ihtiyacını sahiple- rine sunmaktadır (walsh , ). bu nedenle uzun yıllardır, evcil hayvanlar ile insanlar arasındaki ilişkiler farklı alanlarda ve farklı perspektiflerce değerlendirilmiş, bunun yanında sağlık ve bakım alanlarında evcil hayvanlardan yararlanılmıştır. ancak, uzun dönemlerden beri dünya çapında oluşan bu farkındalığa rağmen, destek tedavi modeli olarak hayvanlardan yararla- nılması ülkemiz sağlık sisteminde yer almamaktadır (karayağız-muslu & conk , ). türkiye’deki çalışmalara bakıldığında, bu konunun pek eski olmadığı görülmektedir. ambar- oğlu ( ) tarafından İstanbul ilinde gerçekleştirilen bir çalışmaya göre, bireylerin evcil hayvan sahibi olma nedenleri arasında bir yakının kaybı, çocukların istemesi ve hayvan sevgisinin bulunduğu görülürken, eğitim durumuna ilişkin bir kıyaslama yapıldığında, eğitim durumu yüksek evcil hayvan sahiplerinin, düşük olanlara göre daha çok hayvan sevgisine dayalı olarak evcil hayvan edindikleri ifade edilmiştir. türkiye’deki diğer çalışmalar ise, genel olarak hayvan destekli terapi üzerinedir (cevizci et al. a; b; karayağız-muslu & conk ; Özkul ) ve spesifik olarak yaşlılıkta evcil hayvan terapisi üzerine çalışmaların da sınırlı olduğu görülmektedir. bu konuda koçak’ın ( ), ankara ilindeki huzurevlerinde kalan sakin- ler ve sağlık personelinin evcil hayvan terapisine ilişkin görüşlerini incelemek üzere gerçek- leştirdiği çalışmaya göre, geçmişinde evcil hayvan sahipliğini deneyimlemiş sakinler, huzure- vinde de hayvan destekli uygulamanın faydalı olacağına inandıklarını belirtmişlerdir. tür- kiye’de bu alandaki çalışmaların sınırlılığı göz önünde bulundurularak, bu çalışmada, evcil hayvanların hem kurumsal bakım hizmeti alan hem de evcil hayvanı ile yaşayan bireyler açısın- dan rolü üzerinde durmak, bunun yanında, önemli bir konu olan evcil hayvanın ölümünden söz etmek üzere bir derleme çalışmasının yapılması amaçlanmıştır. . yaşlılıkta gündelik yaşam açısından evcil hayvanların rolü günümüzde, birçok birey gündelik yaşamını evcil hayvanı ile geçirmekte ve onunla yaşlanmakta- dır. söz konusu evcil hayvanlar kişilerin yaşı ilerledikçe, sahibine karşı bir çeşit yoldaşlık sunmaktadır (goodnow et al. , ). dolayısı ile bireyin yaşamı içerisinde yer edinen evcil hayvanlar, aldıkları bakımın yanında, sahiplerinin yaşamını da birçok yönden etkilemektedir. gündelik yaşamda evcil hayvanların sahipleri üzerindeki etkilerinden birisi, fiziksel aktiviteye yöneliktir. Özellikle kedi ve köpek gibi hareketli evcil hayvanlara sahip olan bireyler, söz konusu hayvanın cinsine bağlı olarak, ihtiyaçlarını gidermek üzere çok çeşitli fiziksel aktivitelere dahil olabilmektedir. gezdirmek, oyun oynamak ve beslenmesini sağlamak bu tür yaşlı bireylerin yaşamında evcil hayvanların rolü aktivitelere örnek olarak gösterilebilir. bazı çalışmalara göre, evcil hayvanı olan bireylerin olmayanlara göre fiziksel aktivite konusunda daha az zorlandıkları; bunun yanında özellikle köpek sahiplerinin, diğer evcil hayvan sahipleri ve evcil hayvanı olmayanlara göre daha fazla aktif oldukları görülmüştür (parslow & jorm ; brown & rhodes ; müllersdorf et al. ). Özellikle insan desteğinin sınırlı olduğu durumlarda, evcil hayvanları ile güçlü bağlılık- ları olan yaşlı bireylerin, depresyon semptomlarını daha az tecrübe ettikleri ve daha iyi fiziksel sağlığa sahip oldukları da rastlanan çalışma bulguları arasındadır (garrity et al. ). fiziksel aktivitenin yanı sıra, evcil hayvanlar yaşlı bireylere bir çeşit sosyal destek (weiss ) sağlamaktadır. her ne kadar tüm çalışmalar tarafından desteklenmese de refakatçi hayvanların yalnızlığı hafifletmede etkisi olduğuna ilişkin yaygın bir inanç vardır (gilbey, mcnicholas & collins , akt. gilbey & tani , ). bir sosyal destek elde etme şekli olan evcil hayvan bakımı, bireylerde başka birinin bakımı ve beslenmesine yönelik sorumluluk duygusunun devam etmesini sağlamakta (krause-parello , akt. krause-parello , ), bu da bireylerde yalnızlık (krause-parello ) ve depresyonun azalmasına (johnson & meadows ) yardımcı olmaktadır (krause-parello ). beverland ve diğerleri ( ) tarafından gerçekleştirilen bir çalışmaya göre, bireylerin evcil hayvan sahibi olma nedenleri iki gruba ayrılmaktadır. birincisi arkadaşlık ihtiyacını gidermek iken, ikinci neden ise evcil hayvan sahipliğini toplumsal bir gruba ait olma ve kendini kabul ettirmenin bir yolu olarak algılamalarıdır. dolayısı ile evcil hayvanlar, depresyon ve yalnızlık duygularını azaltabildikleri gibi, sosyal katalizörler olarak da görev alabilmektedir (sable ; knight & edwards ). emeklilik ya da ölüm gibi nedenlerle sosyal çevresinde kayıplar yaşanması sonucu, yaşlılar her zaman etkileşim ve sosyal destek ihtiyaçlarını karşılama olanağı bulamamakta, aynı zamanda sağlık durumu ve finansal problemler de yine sosyal katılım düzeylerini olumsuz yönde etkileyebilmektedir. refakatçi bir hayvana sahip olmak ise, yaşlı bireylerin sosyal katılımını artıracak ve olası olumsuzlukları azaltacak bir seçenek olarak görülmektedir (hart ). bazı çalışmalarda, yaşlı evcil hayvan sahiplerinin, olmayanlara göre yıllık sağlık ziyaretle- rine daha az gittikleri ve eğer hastanede yatarlarsa, yoğun bakım servislerinde daha az zaman geçirdikleri görülmüştür (siegel ; headey , akt. krause-parello , ). baun ve mccabe ( ) özellikle demanslı aile bireylerinin, kalabalık aile toplantılarında kaygılı ve karmaşık duygular içerisinde olabileceğini, bununla beraber, bir evcil hayvan ile oturmanın ve okşamanın yatıştırıcı ve sakinleştirici etkisi ile kişiyi kalabalığın etkileşimine uyma gerekliliğin- den koruyacağını belirtmiştir. ancak, evcil hayvanların yaşlılarda gündelik yaşama etkisi üzerine, farklı çalışma sonuçları da mevcuttur. raina ve diğerlerinin ( ), yaş üzeri bireylerle gerçekleştirdiği geniş çaplı bir çalışmada, her ne kadar evcil hayvan sahipleri, olmayanlara göre daha fazla fiziksel aktivite yaptıklarını belirtseler de, her iki grup arasında psikolojik iyilik hali açısından bir farka rastlanmadığı ifade edilmiştir. bunun yanında bazı çalışmalarda evcil hayvan sahipliği ile sağlık ya da stres düzeyi arasında bir ilişkiye rastlanmazken (tucker et al. ; raina et al. ; simons et al. ), bir kısmında da yalnızlık, sıkılma gibi duygularda artışın görüldüğü ve ameliyat gibi önemli kararları evcil hayvanlarından ayrılmak istemedikleri için vermeyi reddettiklerine ilişkin çalışmalar da (wells & rodi ) mevcuttur. bunlar değerlendirildi- ğinde, her ne kadar genel anlamda çalışmalar evcil hayvanların faydalı olduğunu vurgulasa da farklı koşullar altında bireylerin farklı yanıtlar verebileceğinin de göz önünde bulundurulması gerekmektedir. deniz pamuk . bakım hizmeti açısından evcil hayvanların rolü uzun dönemli bakım kurumlarında kalan bireylerde, eş ya da arkadaş gibi sevilen birinin ve bağımsızlığın kaybı neticesinde artan bağımlılık düzeyi ile ilgili olarak yalnızlık duygusu ortaya çıkabilmektedir (banks & banks , ). ayrıca, uzun dönemli bakım kurumlarında kalan bireylerde diyabet, kardiyovasküler hastalıklar, felç ve azalmış mobilite ile ilgili olarak da diğer kurum sakinleri ile aralarındaki sosyal etkileşim düzeyi azalabilmektedir (butler ; tijhuis et al. ; mcgilton , akt. banks & banks ). uzun dönem bakım kurumlarında or- taya çıkan kısıtlamalar, kişisel aidiyetin kaybı, sahip olunan şeylerin kaybı (evcil hayvanlar dahil); ve toplum temelli sosyal etkileşim olanaklarının kaybı ile ilgilidir. bu tür kısıtlamalar ise, bireyde depresyon, yalnızlık ve sosyal izolasyona neden olabilmektedir (savishinksy ; arkow ; banks & banks ). sakinlerin yalnızlık hissini azaltmak üzere tavsiye edilen yöntemler arasında hayvan destekli terapi ve hayvan destekli aktivite bulunmaktadır (banks et al. , ). bu iki kav- ram her ne kadar birbiri ile benzer özelliklere sahip olsa da aralarındaki en önemli fark, hayvan destekli terapi bir sonuca yönelik ve planlı şekilde uygulanan bir yöntemken, hayvan destekli aktivitelerin bir sonuç beklenmeksizin daha geniş zamana yayılmış şekilde gerçekleştiriliyor oluşudur (o’haire ). hayvan destekli terapi, son yıllarda, akıl beden ve ruhun iyileşmesi için bir yöntem olarak kabul görmeye başlamıştır (ormerod , akt. huff-mercer , ). bu uygulama, eğlence amacı ile hayvanların kullanılmasından oldukça farklıdır. daha çok, insana ilişkin problemlerin çözümünde uygulamalı bir bilim olarak kabul edilmekte ve dahası, diğer terapilere yardımcı olarak da kullanılabilen disiplinler arası bir yaklaşımdır (gammonley & yates , , akt: edwards & beck , ). kurumlarda kalan yaşlılar için hayvanların kullanım şekillerinden birisi, bakımevlerinde her bir bölüm için maskot olan bir kedinin bulundurulmasıdır (brickel , akt. edwards & beck, , ). her ne kadar pire ve alerjiler gibi olumsuz sonuçlar ifade edilmiş olsa da, genel izle- nim hastaların yanıt verme ihtimalini ve tedavi çevresinde bulunmaya ilişkin keyif alma düzeylerini kedilerin artırdığı yönündedir. ayrıca, çalışanların programlara hayvanların dahil edilmesi ile, iş yüklerinin azaldığına ilişkin inançları olduğunu belirten çalışmalar da mevcuttur (cole & cawlisnki ; crowley-robinson & blackshaw ; kranz & scharf , akt. edwards & beck , ). calvert ( ) tarafından gerçekleştirilen bir çalışmada, evcil hayvanlarla etkileşime geçme- nin yalnızlık duygusu üzerindeki etkisi incelenmiştir. Çalışma bulgularına göre, evcil hayvan- larla etkileşim düzeyi yüksek olan bakımevi sakinlerinin, diğerlerine göre yalnızlık duygusunu daha az deneyimledikleri görülmüştür bunun yanında yine bakım kurumlarında gerçekleştirilen ve evcil hayvanların grup ve birey üzerindeki etkilerinin incelendiği benzer bir çalışmada, grup içerisindeki sakinlerin yalnızlık düzeyleri ile evcil hayvan etkileşimleri arasında anlamlı bir bağlantı bulunamamıştır, bunun nedeni ise aynı çalışmada, duyma problemleri, söz konusu hayvana tanıdık olmama ve uyumsuzluk olarak gösterilmiştir. bunlar daha açık bir ifade ile, duyma problemi olan sakinlerin birbirleri ile etkileşime geçmekte zorlanmaları, ve gruba uyum sağlayamamaları ile ilişkilendirilmiştir (banks & banks ). geçici ya da kalıcı şekilde bir hayvanın ulaşılabilir olduğu durumlarda, köpeklerin, gülme ve kahkaha atma gibi sosyal davranışları artırabildiğine ilişkin çalışmalar da mevcuttur (batson et al. ; kongable et al. ; verderber , akt. edwards & beck , ). her ne kadar hayvanlar ile etkileşime geçme konusunda riskler bulunsa da, hayvan içeren programların yaşlı bireylerin yaşamında evcil hayvanların rolü tehlikeli olabileceğine ve yan etkilere ilişkin az sayıda bulguya rastlanmıştır (schantz ; walter-toews , akt. edwards & beck , ). alzheimer hastalığı ile ilgili ortaya çıkabilecek zorlu davranışların yönetilmesi açısından çevre oldukça büyük etkiye sahiptir. lawton ( ), bireylerin kırılganlaştıkça, yaşadıkları çevreden de daha fazla etkileneceklerini ifade etmiştir (akt. edwards & beck , ). alzheimerlı bireylere ilişkin uygulamalarda kedi ve köpeklerin kullanımı sürekli denetim gerektirdiği için problematik olabilmektedir. Özellikle bu bireyler ısırma ya da çiziğe neden olabilecek şekilde, hayvanları korkutacak ya da kuyruk ve kulağı çekme gibi uygunsuz davranış- lar sergileyebilmektedir. en yaygın eleştiri, hayvan barındıran terapi programlarının hedef odaklı olmadığı ve hedeflerin değerlendirmelerinin açık olmadığına ilişkindir (beck ). bu noktada, otomatik akvaryumlar daha güvenli kullanım sağlayacak ve bunun yanında, daha az dikkat ve masraf gerektirecektir (edwards & beck , ). . evcil hayvanın kaybı ve yas süreci voith ( ) tarafından gerçekleştirilen bir çalışmada, araştırmaya katılan evcil hayvan sahiplerinin % oranında evcil hayvanlarına bağlandıkları, ve evcil hayvanlarını aile bireyleri olarak algıladıkları görülmüştür (akt. banks et al. ). bu bakımdan değerlendirildiğinde, özellikle evcil hayvanı ile bağ kurmuş ve aile bireyi olarak kabul etmiş bireyler için, söz konusu evcil hayvan hayatını kaybettiğinde, bu kayıpla birlikte yeni problemler de açığa çıkacaktır. cowles’a göre ( ) evcil hayvan ile sahibi arasındaki bağın düzeyi, söz konusu evcil hayva- nın kaybı ile ortaya çıkacak psikolojik etkinin düzeyini de belirlemektedir. Özellikle duygusal ihtiyaçlarını evcil hayvanlarla yerine getiren bireylerde, evcil hayvanından ayrılmak ya da evcil hayvanın kaybı gibi durumlarda, söz konusu evcil hayvan ile elde edilmiş olan refakat duygusu, karmaşık ve uzun süreli psikolojik reaksiyonlara dönüşebilmektedir (keddie ). wrobel ve dye’nin ( ) de ifade ettiği üzere, birçok birey evcil hayvanların bir bağlanma figürü olmasını mantıklı kabul etmediğinden, başka birisinin evcil hayvanının ölümünü de bu düzeyde önemli görmeme eğilimindedir. dolayısı özellikle bir insanın kaybıyla ortaya çıkan üzüntü ile kıyaslandığında, evcil hayvan sahipleri, benzer düzeyde anlaşılamamakta ve bu duygu- larını paylaşamamaktadır. (stewart et al. ). bu durumda yeterli sosyal destek mekanizmasına ulaşamayan bireylerde ise, yas düzeyleriyle birlikte çıkan sorunlar daha artmakta ve bu da yine söz konusu bireyin izolasyonuna neden olabilmektedir (cowles , akt. wrobel & dye ). tartışma ve sonuç İleri yaşta evcil hayvan bakımı, hem gündelik yaşam hem de kurumsal bakım hizmeti açısından birçok problemi de ortaya çıkarabilmektedir. her ne kadar hastane, bakımevi, eğitim kurumları ya da bireylerin evlerinde ihtiyaç duyulabilecek düzeyde ve faydalı olsa da bu gibi kurumlara özellikle hijyen kaygısı ve düzenin bozulması gibi çeşitli nedenlerle evcil hayvan kabul edilme- mektedir (o’haire ). bununla birlikte, gündelik yaşam değerlendirildiğinde, ileri yaşta evcil hayvan bakımı, daha genç bireylere göre özellikle finansal, fiziksel, ulaşım ve barınma gibi konularda daha problemli olabilmektedir (hart ). gelir durumunun evcil hayvan sahipliği üzerindeki etkisine yönelik çalışmalar (cover et al. ; albert & bulrcoft ), evcil hayvan sahiplerinin gelir düzeyinin, evcil hayvanı olmayan- lara göre daha yüksek olduğu göstermektedir. Özellikle evcil hayvanın beslenmesi ve sağlık masrafları göz önünde bulundurulduğunda, finansal durum önemli bir unsur olarak karşımıza çıkmaktadır. deniz pamuk son yıllarda hayvan-insan etkileşimine yönelik çalışmalar ağırlıklı olarak kültürel farklılık- lara yönelmiştir (risley-curtiss et al. a; risley-curtiss et al. b; risley-curtiss ; evans & gray ; jegatheesan ). buna göre hayvan destekli uygulamalarda hangi hayvanın seçileceği, hizmet sunulacak kişinin tutumu ve kültüre özgü değerlendirme biçimleri- nin önemi vurgulanmaktadır. farklı bireysel ve kültürel özelliklere bağlı olarak, bireylerin evcil hayvan sahipliğine ve evcil hayvan ile gerçekleştirilen uygulamalara karşı tutumları farklı şekilde yansıyabilmektedir. bir çalışmada, kır ve kentte yaşayan bireylerin evcil hayvanları nasıl tanımladıkları incelenmiştir. sınıfsal farklılıklara bakıldığında, özellikle çiftçiler tarafından köpek- ler hem evcil hayvan hem de işlere yardımcı olarak görülürken, kediler bir çeşit parazit olarak ifade edilmiştir. oysa aynı çalışmada, kentte yaşayan diğer meslek sahiplerinin her iki hayvan türünü de evcil hayvan olarak kabul ettikleri görülmüştür (doures, conty & more ). bunun yanında, her ne kadar faydalarından söz etsek de, yaşlı bireyler için evcil hayvan sahiplenme ya da sunulan hizmetler arasına evcil hayvan destekli uygulamaların konulmasında dikkat edilmesi gereken bir diğer husus, bireyin yaşam seyri boyunca hayvanlarla ilişkisinin ne durumda olduğunun incelenmesidir. Örneğin erken dönemde evcil hayvanlarla ilgili travma yaşamış ya da fobisi olan bir yaşlı bireye bu tür hizmetler vermeye çalışmak muhtemelen benzer etkiyi sağlamayacaktır. ayrıca yukarıda da belirtildiği üzere, alzheimerlı bireylerde söz konusu hayvana karşı olumsuz tepkiler ortaya çıkabileceğinden, bu gibi durumları önlemek adına mutlaka bir personelin ya da sorumlu birinin bulunması gerekmektedir. bunlara ek olarak, son dönemlerde gerçekleştirilen bazı çalışmalar, evcil hayvanların fayda- larının genelleştirilemeyeceği üzerinde durmaktadır. ağırlıklı olarak vurgulanan sosyal destek boyutunun her evcil hayvan sahibi için geçerli olmayacağı, mcconnel ve diğerleri ( ) tarafından gerçekleştirilen bir çalışmada vurgulanmıştır. buna göre, evcil hayvan sahibi bireyler fiziksel olarak daha aktif, daha bilinçli ve daha korkusuzken; sosyal destek düzeyi açısından evcil hayvanı olmayan bireylere göre bir farklılık bulunmamıştır. bir diğer eleştiri ise, evcil hayvanların insan sağlığı üzerindeki etkisi üzerinedir. parslow’un ( , ) ifade ettiği üzere, evcil hayvan sahiplerinin sağlık düzeylerinin daha iyi olma ne- deni, sağlıklı kişilerin hasta ya da engelli kişilere göre daha fazla evcil hayvan sahibi olma imkanı bulunması ile ilgilidir. yine aynı çalışmanın bulgularına göre, literatürden farklı şekilde eğitim düzeyi düşük olan kişilerde daha fazla evcil hayvan sahipliği eğilimi görülmüştür. bunun dışında, sağlık koşulları nedeni ile yeteri kadar evcil hayvan ile ilgilenememek, ula- şım olanaklarının sınırlılığı (toplu ulaşım araçlarında evcil hayvan kabul edilmemesi gibi), kadınlarda eşin kaybı ve yeterli finansal güce sahip olamamak (arun & karademir-arun ) gibi faktörler de gündelik yaşamda evcil hayvan sahiplerinin, evcil hayvanlarından ayrılmalarını gerektirecek problemler arasında gösterilebilir. bu çalışmada, yaşlılıkta evcil hayvanların rolü ve olası uygulamalardan söz edilmesi amaçlanmıştır. genel anlamda, evcil hayvan sahipliği ve bakım uygulamalarındaki rolü üzerine uzun yıllardan beri çalışmaların devam etmekte, son yıllarda evcil hayvanların fiziksel aktivi- teye ve sosyal katılıma katkı sağladığı görüşünün yaygınlığına rağmen, bu önemli iki değişken arasındaki ilişkinin ne yönde olduğu ve bunun yanında kültürel ve bireysel farklılıkların evcil hayvanların yaşamımıza nasıl etki ettiğini incelemek üzerine araştırmalar yapılmaktadır. bu durumda ise, yukarıda da sözünü ettiğimiz gibi, farklı sonuçlar ve farklı değerlendirmeler ortaya çıkmaktadır. 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[pdf] systematic review of early intensive behavioral interventions for children with autism. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / . : ;nd corpus id: systematic review of early intensive behavioral interventions for children with autism. @article{howlin systematicro, title={systematic review of early intensive behavioral interventions for children with autism.}, author={p. howlin and i. magiati and t. charman}, journal={american journal on intellectual and developmental disabilities}, year={ }, volume={ }, pages={ - } } 	p. howlin, i. magiati, t. charman 	published 	medicine 	american journal on intellectual and developmental disabilities recent reviews highlight limitations in the evidence base for early interventions for children with autism. we conducted a systematic review of controlled studies of early intensive behavioral interventions (eibi) for young children with autism. eleven studies met inclusion criteria (including two randomized controlled trials). at group level, eibi resulted in improved outcomes (primarily measured by iq) compared to comparison groups. at an individual level, however, there was considerable… expand view on pubmed behaviorpedia.com save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations results citations view all tables and topics from this paper 	 table 	 table 	autistic disorder citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency review of early intervention for children with autism spectrum disorder: focused on randomized controlled trials 	y. yang 	medicine 	soa--ch'ongsonyon chongsin uihak = journal of child & adolescent psychiatry 	 	pdf save alert research feed early comprehensive behaviorally based interventions for children with autism spectrum disorders: a summary of findings from recent reviews and meta-analyses 	i. magiati, x. j. tay, p. howlin 	psychology 	 	 	pdf 	view excerpt save alert research feed a systematic review and meta-analysis of comprehensive interventions for pre-school children with autism spectrum disorder (asd) 	yoshiyuki tachibana, celine miyazaki, + authors y. kamio 	psychology, medicine 	plos one 	 	 	pdf 	view excerpts, cites methods and background save alert research feed efficacy of early interventions for infants and young children with, and at risk for, autism spectrum disorders 	r. landa 	medicine 	international review of psychiatry 	 	 	 save alert research feed behavioral interventions for children with autism spectrum disorders. 	l. leblanc, j. gillis 	medicine 	pediatric clinics of north america 	 	 save alert research feed a meta-analytic study on the effectiveness of comprehensive aba-based early intervention programs for children with autism spectrum disorders 	n. peters-scheffer, r. didden, h. korzilius, p. sturmey 	psychology 	 	 	pdf save alert research feed a systematic review with meta-analysis of comprehensive interventions for preschool children with autism spectrum disorder (asd): study protocol 	yoshiyuki tachibana, j. green, y. hwang, r. emsley 	medicine 	bmj open 	 	 	pdf save alert research feed evidence base update for autism spectrum disorder 	t. smith, suzannah iadarola 	psychology, medicine 	journal of clinical child and adolescent psychology : the official journal for the society of clinical child and adolescent psychology, american psychological association, division 	 	 	pdf 	view excerpts, cites background save alert research feed outcome for children with autism receiving early and intensive behavioral intervention in mainstream preschool and kindergarten settings. 	s. eikeseth, lars klintwall, e. jahr, peter karlsson 	psychology 	 	 	highly influenced 	pdf 	view excerpts, cites methods and background save alert research feed imitating the child with autism: a strategy for early intervention? 	jane s. m. lidstone, mirko uljareviÄ, hilary kanaris, julie mullis, laura fasoli, s. leekam 	psychology 	 	 	pdf 	view excerpt, cites background save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency interventions for young children with autism 	shari levy, a. kim, melissa l. olive 	psychology 	 	 save alert research feed comprehensive synthesis of early intensive behavioral interventions for young children with autism based on the ucla young autism project model 	b. reichow, m. wolery 	psychology, medicine 	journal of autism and developmental disorders 	 	 	pdf save alert research feed empirically supported comprehensive treatments for young children with autism. 	s. rogers 	psychology, medicine 	journal of clinical child psychology 	 	 save alert research feed randomized trial of intensive early intervention for children with pervasive developmental disorder 	tristram smith, a. groen, j. wynn 	psychology 	 	 	highly influential 	view excerpts, references methods and background save alert research feed randomized trial of intensive early intervention for children with pervasive developmental disorder. 	t. smith, a. groen, j. wynn 	medicine 	american journal of mental retardation : ajmr 	 	 	highly influential 	pdf 	view excerpts, references background and methods save alert research feed long-term outcome for children with autism who received early intensive behavioral treatment. 	john mceachin, t. smith, o. i. lovaas 	psychology, medicine 	american journal of mental retardation : ajmr 	 	 	pdf save alert research feed designing research studies on psychosocial interventions in autism 	t. smith, l. scahill, + authors a. wagner 	psychology, medicine 	journal of autism and developmental disorders 	 	 	view excerpt, references results save alert research feed a new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. 	c. aldred, j. green, c. adams 	psychology, medicine 	journal of child psychology and psychiatry, and allied disciplines 	 	 save alert research feed a pilot randomised control trial of a parent training intervention for pre-school children with autism 	auriol drew, g. baird, + authors t. charman 	psychology, medicine 	european child & adolescent psychiatry 	 	 	view excerpts, references background save alert research feed intensive behavioral treatment for children with autism: four-year outcome and predictors. 	glen o sallows, tamlynn d graupner 	psychology, medicine 	american journal of mental retardation : ajmr 	 	 	pdf save alert research feed ... ... related papers 	abstract 	tables and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue national health statistics reports number january , number n january , complementary and alternative therapies in hospice: the national home and hospice care survey: united states, by anita bercovitz, ph.d.; manisha sengupta, ph.d.; adrienne jones, b.s.; and lauren d. harris-kojetin, ph.d. division of health care statistics abstract objective—this report presents national estimates on the provision and use of complementary and alternative therapies (cat) in hospice. comparisons of organizational characteristics of hospice care providers are presented by whether the provider offered cat. comparisons of selected characteristics of patients discharged from hospice are presented by whether they received care from a provider that offered cat, and whether they received a cat service. methods—estimates are based on data from the national home and hospice care survey (nhhcs), conducted by the centers for disease control and prevention’s national center for health statistics. results—in , . % of hospice care providers offered cat services, had a cat provider on staff or under contract, or both. among hospice care providers offering cat, over one-half offered massage ( . %), supportive group therapy ( . %), music therapy ( . %), pet therapy ( . %), or guided imagery or relaxation ( . %). of the hospice care providers that offered cat, . % had at least one discharged hospice patient who received cat during hospice care. overall, . % of all discharged hospice patients received at least one cat from the hospice care provider. over one-half of discharged patients ( . %) received care from a provider that offered cat, and of those, . % received at least one cat from the hospice care provider during their stays. there were no differences in demographics, health, functional status, or admission diagnoses between patients discharged from hospice either by whether they received care from a provider that offered cat or whether they received cat. keywords: end-of-life and palliative care • quality of care • pain management • advance directives introduction the use of complementary and alternative therapies (cat)—products and practices not part of standard care u.s. de ( )—is widespread, with a survey noting that almost % of noninstitutionalized u.s. adults used some form of cat in the previous months. ( ) cat is commonly used by partment of health and human se centers for disease control and prevent national center for health statistics persons with cancer and other chronic conditions ( – ). a primary focus of both cat and end-of-life hospice care is to provide comfort and alleviate pain and symptoms such as dyspnea or anxiety. clinical studies have found that some types of cat use are associated with abatement of symptoms, including anxiety and pain, and improvements in mood and sense of control ( – ). use of cat may provide another avenue in addition to or instead of allopathic medicine to address the hospice goal of improving quality of life at the end of life. hospice funding for cat is currently primarily provided by volunteers or donations rather than by health insurance ( ). several studies have found that the provision and use of cat were relatively common in end-of-life care; at least one-half of hospices offered cat, and approximately one-third to one-half of patients at end of life used some form of cat. however, these studies were not based on nationally representative information, and thus their generalizability is limited ( – ). using nationally representative data, this report compares hospice care providers that offer cat to those that do not offer cat and discharged hospice patients who did receive cat to those who did rvices ion page national health statistics reports n number n january , f i w u o m w o h p o m a ( b d c ( n p c ( s n ( n t ( t t e p v d p c c o w p p d c d m r c f n t f ‘ a not receive cat. we compare hospice care providers that offer cat to those that do not because there may be organizational differences related to the decision to offer or not offer cat, especially since cat is often not covered by health insurance. we compare discharged hospice patients who received cat to those who did not to explore whether certain patient characteristics are related to cat access or cat use. methods data source data from hospice care providers participating in the national home and hospice care survey (nhhcs) were used for these analyses. the nhhcs is one in a series of nationally representative, cross-sectional sample surveys of u.s. home health and hospice agencies. it is designed to provide descriptive information on home health and hospice agencies, their staffs, their services, and their patients. nhhcs was first conducted in and was repeated in , , , , , and most recently in . all agencies that participated in the nhhcs were either certified by medicare, medicaid, or both, or were licensed by a state to provide home health services, hospice services, or both and currently or recently served home health or hospice patients. agencies that provided only homemaker services or housekeeping services, assistance with instrumental activities of daily living (iadls), or durable medical equipment and supplies were excluded from the survey. further information on the sampling, survey design, and other survey methodology is available in the ‘‘technical notes’’ and documentation provided at: http://www.cdc.gov/nchs/ nhhcs.htm and in dwyer et al. ( ) ( ). the nhhcs collected information from each participating, sampled hospice care provider on a sample of patients discharged from hospice during a -month period starting months before the month of the interview. a sample of patients discharged from hospice care is more likely to include patients with short stays and multiple discharges compared with a sample drawn from hospice patients receiving care at the time of sample selection. thus, the sample analyzed in this study—patients discharged from hospice care—is representative only of discharges from hospice care, rather than hospice patients being treated by the agency at the time of the survey. for the remainder of this report, patients discharged from hospice care are termed ‘‘discharged patients.’’ data analysis all analyses were performed in sas-callable sudaan to account for sampling weights and the complex sampling design ( ). differences among subgroups were evaluated using chi-square, and t-tests were used to test for significance at the p < . level. however, if the difference between subgroups was smaller than the percentage of missing data for the variable of interest, significance testing was not performed. differences between subgroups were also not evaluated if one of the estimates was not considered reliable (as defined in the ‘‘technical notes’’ section on standard errors). no adjustments were made for multiple comparisons. the difference between any two estimates is mentioned in the text only if it is statistically significant. however, if a comparison is not made or mentioned, it may or may not be significant. otherwise, terms such as ‘‘similar’’ or ‘‘no significant differences’’ are used to denote that the estimates being compared are not statistically significantly different. four separate logistic regression models were run, each using the same independent variables. three of these models were run to identify the independent contributions of variables to whether a hospice care provider offered cat. among these three models, one included all hospice care providers, the second included only providers that offered hospice care only, and the third included only providers that offered both home health and hospice care. the ourth regression model examined the ndependent contributions of variables to hether at least one discharged patient sed cat, with the population including nly providers that offered cat. all odels included the following variables: hether the hospice care provider ffered only hospice care or both home ealth and hospice care; ownership (for rofit; non-profit, government, and ther); chain membership (yes, no); ain referral source (hospital, physician, nd all other); hospice type freestanding; hospital and nursing home ased); whether the provider had edicated hospice facilities (yes, no); ontract with a residential care provider yes, no); contract with a hospital (yes, o); contract with managed care or rovide insurance provider (yes, no); ontract with a skilled nursing facility yes, no); location (metropolitan tatistical area; micropolitan and other); umber of years providing hospice care years or fewer, more than years); umber of hospice patients served at ime of survey ( or fewer, more than ); and number of services offered mean or fewer, greater than the mean). he adjusted percentages reported are he predicted marginal probabilities stimated for the average hospice care rovider after adjusting for all other ariables noted in the model. for further escription see the ‘‘technical notes.’’ in this report, hospice care roviders were categorized as providing at if they either offered cat or had at providers on staff or contract. all ther hospice care providers, including . % that were missing information on hether they offered cat or had cat roviders, are categorized as not roviding cat. information on whether ischarged hospice patients received a at from the agency was missing for . % of discharged hospice patients. ischarged hospice patients with issing information on whether they eceived a cat from the agency were ategorized as not receiving cat. for urther explanation see the ‘‘technical otes.’’ for the categorical variables used in he analyses, nonresponses, ranging rom to . %, were recoded as ‘unknown’’ and included in the nalyses. marital status at admission had http://www.cdc.gov/nchs/nhhcs.htm tens art therapy aromatherapy therapeutic touch guided imagery or relaxation pet therapy music therapy supportive group therapy massage . . . . . . . . . percent of hospice care providers offering cat notes: hospice care providers offered cat or had a cat provider on staff or contract. providers may offer more than one therapy. tens stands for transcutaneous electrical nerve stimulation. source: cdc/nchs, national home and hospice care survey, . national health statistics reports n number n january , 	 page note: hospice care providers offered cat or had a cat provider on staff or contract. source: cdc/nchs, national home and hospice care survey, . p e rc e n t o f h o sp ic e c a re p ro vi d e rs . . . provide hospice care only provide both home health and hospice care hospice care providers figure . percentage of hospice care providers offering complementary and alternative therapies (cat): united states, figure . types of complementary and alternative therapies (cat) offered by hospice care providers: united states, a nonresponse rate of . % and whether patients had a colostomy or difficulty controlling bowels had a nonresponse rate of . %. the rest of the categorical variables had nonresponse rates of less than %, with the majority less than %. for continuous variables, unknowns were excluded when calculating estimates. the percentage missing for continuous variables used in this report are: number of hospice patients at time of survey ( . %), number of beds in dedicated hospice facilities ( . %), number of years the agency has provided hospice care ( . %), and length of hospice service ( . %). the ranges of values for the three continuous variables were large, and the means and medians were quite different. because the median is less affected by the range of responses, medians are presented in the tables. results the proportion of hospice care providers offering cat + in , . % of all hospice care providers offered cat. the proportion offering cat was greater among providers of hospice care only ( . %) than providers of both home health and hospice care ( . %) (figure and tables and iii). types of cat offered by hospice care providers + of hospice care providers offering cat, the most commonly provided were massage ( . % of providers), supportive group therapy ( . %), music therapy ( . %), pet therapy ( . %), guided imagery and relaxation ( . %), and therapeutic touch ( . %) (figure ). characteristics of hospice care providers by whether they offered cat + on average, hospice care providers offered services excluding cat (median ). hospice care providers that offered cat offered significantly more services overall (excluding cat) than those that did not offer cat (table ). +	 ownership and total number of services offered were significantly associated with offering cat, among all hospice care providers. after adjusting for other differences among agencies, . % of for-profit providers ( % confidence interval (ci) = . %– . %) and . % ( % ci = . %– . %) of non-profit, government and other page 	 national health statistics reports n number n january , providers offered cat. in facilities that offered the mean or fewer services . % offered cat ( % ci = . %– . %), compared with . % of providers that offered more than the mean number of services ( % ci = . %– . %). (results not shown.) + chain affiliation, ownership, and number of services provided were significantly associated with whether the provider offered cat. this finding applied to providers of hospice care only. adjusted models estimate that . % of for-profit providers ( % ci = . %– . %) and . % of non-profit, government, and other providers offered cat ( % ci = . %– . %). in facilities that offered the mean or fewer services . % offered cat ( % ci = . %– . %), compared with . % of providers that offered more than the mean number of services ( % ci = . %– . %). among providers that were part of a chain . % offered cat ( % ci = . %– . %) compared with . % of unaffiliated providers ( % ci = . %– . %). (results not shown.) + ownership and contracts with hospitals were significantly associated with whether providers of both home . % . % . % notes: hospice care providers offered cat or had a cat pro because the denominator includes a category of unknowns not source: cdc/nchs, national home and hospice care surv figure . discharged patients by availability a therapies (cat): united states, health and hospice care offered cat. adjusted models estimate that . % of for-profit providers ( % ci = . %– . %) and . % of non­ profit, government, and other providers offered cat ( % ci = . %– . %). among providers with contracts with hospitals . % offered cat ( % ci = . %– . %), compared with . % of providers without contracts with hospitals ( % ci = . %– . %). (results not shown.) characteristics of patients discharged from hospice by availability and use of cat +	 although . % of discharged patients received care from a provider of hospice care that offered cat, only . % of all discharged patients received at least one cat from the provider during their episode of care (figure ). +	 discharged patients who received care from a hospice care provider who offered cat had a longer mean length of service ( days) than those who received care from a hospice care provider that did not offer cat ( days) (table ). +	 a greater proportion of discharged patients receiving care from a hospice hospice care provider offered cat, patient discharged from hospice received cat hospice care provider did not offer cat hospice care provider offered cat, patient discharged from hospice did not receive cat vider on staff or contract. percentages may not add to % included in the figure. ey, . nd use of complementary and alternative care provider offering cat had impaired cognitive functioning ( . %) than discharges receiving care from a provider not offering cat ( . %). table shows selected admission diagnoses of discharged patients from hospice, by availability of cat. +	 among discharged patients receiving care from a hospice care provider that offered cat, . % received at least one cat from the provider during their episode of care (table ). +	 a smaller proportion of discharged patients who received cat from the hospice care provider were married ( . %) than discharged patients who did not receive cat ( . %). +	 the majority of all discharged patients had a do not resuscitate order (dnr), but the proportion varied by whether the discharged patient received cat from the provider. among discharged patients who received cat, . % had a dnr, greater than the . % who received care from providers not offering cat. a greater proportion of discharged patients who did not use cat although it was available, had a dnr ( . %) than discharged patients who received care from providers not offering cat (figure ). +	 among discharged patients who received cat, . % had a durable power of attorney (dpa) or health care proxy or surrogate, greater than the . % who did not use cat, although it was available, and patients receiving hospice care from providers not offering cat ( . %). +	 among discharged patients who received cat, . % had a living will greater than the . % receiving hospice care from providers not offering cat. +	 the proportion of discharged patients with a standing order for pain medication was greater among those who had received cat ( . %) than among those who did not receive cat, although it was available, ( . %) and those receiving care from a provider that did not offer cat ( . %) (figure ). hospice care provider hospice care provider hospice care provider offered cat and patient offered cat but patient did not offer cat discharged from hospice discharged from hospice used at least one service did not use cat p e rc e n t o f d is ch a rg e d h o sp ic e p a tie n ts . . . . . . . . . . . . do not durable power of living will comfort care resuscitate attorney or health order care proxy or surrogate type of advance directive notes: comfort care includes feeding or medication restrictions, a do not hospitalize order, and other orders for comfort care. discharged hospice patients may have had more than one type of advance directive. source: cdc/nchs, national home and hospice care survey, . hospice care providerhospice care provider hospice care provider offered cat and patient offered cat but patient did not offer cat discharged from hospice discharged from hospice used at least one service did not use cat . . . . . . . . . p e rc e n t o f d is ch a rg e d h o sp ic e p a tie n ts standing order for prn order for nonpharmacological pain medication pain medication methods notes: prn is an order for medication to be provided on an as-needed basis. nonpharmacological methods include distraction, heat or cold, massage, positioning, or music. discharged hospice patients may have received more than one pain treatment approach. data are from all discharged hospice patients. source: cdc/nchs, national home and hospice care survey, . national health statistics reports n number n january , 	 page figure . advance directives among discharged patients by availability and use of complementary and alternative therapies (cat): united states, figure . pain treatment among discharged patients by availabiity and use of complementary and alternative therapies (cat): united states, + discharged patients who received cat were more likely to have a prn order for pain medication ( . %) than discharged patients who received care from a provider not offering cat ( . %). + a greater proportion of discharged patients who received cat received nonpharmacological methods for pain control ( . %) than those who did not receive cat ( . %), or received care from a provider that did not offer cat ( . %). characteristics of hospice care providers that offered cat by whether at least one discharged patient received at least one cat from the provider +	 twenty-one and one-half percent of hospice care providers that offered cat had at least one discharged patient who received at least one cat from the agency. (results not shown.) +	 having a contract with a hospital was related to whether at least one patient used cat among hospice care providers that offered cat controlling for other factors. among at least one patient who used cat ( % ci = – . %). (results not hospice care providers that offered cat . % of providers with contracts with a hospital ( % ci = . %– . %) and . % of providers without contracts with a hospital had shown.) discussion results from nhhcs indicate that . % of all hospice care providers offered cat; however, it was more common for hospice care providers to offer cat than for discharged patients to receive cat from the provider. more than one-half of providers that offered cat offered massage, supportive group therapy, music and pet therapy, and guided imagery and relaxation. providers of hospice care only were more likely to offer cat than providers page 	 national health statistics reports n number n january , of both home health and hospice care. of the providers that offered cat, about one-fifth had at least one discharged patient who used at least one cat from the provider during an episode of hospice care. hospice care providers that were non-profit or government owned were more likely to offer cat. additional characteristics associated with offering cat varied depending on whether the provider offered both home health and hospice care or hospice care only. providers of hospice care only, which offered a greater number of services and were part of a chain, were more likely to offer cat, while providers of both hospice and home health care with contracts with hospitals were more likely to offer cat. however, the facility characteristics associated with whether a provider offered cat were not the same as the characteristics associated with whether at least one patient used cat. among hospice care providers offering cat, only having contracts with hospitals was associated with having at least one patient use cat. the proportion of discharged hospice patients receiving cat is much lower than previously published estimates of use of cat among the nonhospice population ( ). several factors may account for this difference. nhhcs asked only about cat provided by the hospice care provider. however, patients may have been receiving cat through sources other than the hospice care provider. these services would not be included as a service from the nhhcs provider. kutner et al. found that most cat was not provided by hospice personnel ( ). in addition, data from the national health interview survey on trends in personal health expenditures on cat suggest a shift from receipt of cat from health care professionals to increasing use of self-care therapies ( ). the definition of cat may also be an important factor. a hospice may have offered therapies, such as supportive group therapy, music, or pet therapy, which were considered cat for nhhcs, but which the hospice survey respondent did not consider cat. there were very few differences in demographics, health, functional status, and admission diagnosis among discharged hospice patients by availability and use of cat. the only significant differences found in the variables analyzed were that a greater proportion of patients discharged from hospice providers offering cat had impaired cognitive functioning and a smaller proportion of discharged hospice patients that used cat were married. however, there were some consistent differences in some aspects of quality of hospice care by availability and use of cat. the length of time a discharged patient received hospice care was longer among discharged patients receiving care where cat was offered compared with patients where cat was not offered. there were also consistent differences in pain management approaches and advance directive adoption between discharged patients receiving cat and those receiving care from a provider that did not offer cat. compared with patients where cat was not offered, patients who received cat were more likely to have a standing order for pain management, a prn order for pain management, a dnr, a dpa or health care proxy, and a living will. although nhhcs lacks both the design and content to explain these observed associations, it is possible that discharged patients that are more likely to have an advance directive are also more likely to be more selective about their care. they may choose providers that offer more amenities, cat being one of them, or be more proactive in requesting approaches for pain management. conversely, providers offering cat may be more flexible and proactive in meeting their patients’ perceived needs, including encouraging completion of advance directives, and approaches toward pain management, as well as offering a greater variety of services. references .	 medlineplus definition of complementary and alternative medicine. . available from: http://www.nlm.nih.gov/medlineplus/ complementaryandalternative medicine.html. accessed mar , . .	 barnes pm, bloom b, nahin rl. complementary and alternative medicine use among adults and children: united states, . national health statistics reports; no . hyattsville, md: national center for health statistics. . .	 ernst e, cassileth br. the prevalence of complementary/ alternative medicine in cancer: a systematic review. cancer ( ): – . . .	 wootton jc, sparber a. surveys of complementary and alternative medicine: part iv. use of alternative and complementary therapies for rheumatologic and other diseases. j altern complement med ( ): – . . .	 wootton jc, sparber a. surveys of complementary and alternative medicine: part iii. use of alternative and complementary therapies for hiv/aids. j altern complement med ( ): – . . .	 sparber a, wootton, jc. surveys of complementary and alternative medicine: part ii. use of alternative and complementary cancer therapies. j altern complement med ( ): – . . .	 starr rj. music therapy in hospice care. am j hosp palliat care ( ): – . . .	 wilkinson sm, love sb, westcombe am, et al. effectiveness of aromatherapy massage in the management of anxiety and depression in patients with cancer: a multicenter randomized controlled trial. j clin oncol ( ): – . . .	 hilliard re. music therapy in hospice and palliative care: a review of the empirical data. evid based complement altern med ( ): – . . . hilliard re. a post-hoc analysis of music therapy services for residents in nursing homes receiving hospice care. j music ther. ( ): – . . . hilliard re. the effects of music therapy on the quality and length of life of people diagnosed with terminal cancer. j music ther ( ): – . . http://www.nlm.nih.gov/medlineplus/complementaryandalternativemedicine.html national health statistics reports n number n january , page . horne-thompson a, grocke d. the effect of music therapy on anxiety in patients who are terminally ill. j palliat med ( ): – . . . krout re. the effects of single- session music therapy interventions on the observed and self-reported levels of pain control, physical comfort, and relaxation of hospice patients. am j hosp palliat care ( ): – . . . pan cx, morrison rs, ness j, et al. complementary and alternative medicine in the management of pain, dyspnea, and nausea and vomiting near the end-of-life. a systematic review. j pain symptom manage ( ): – . . . soden k, vincent k, craske s, et al. a randomized controlled trial of aromatherapy massage in a hospice setting. j palliat med ( ): – . . . demmer c. a survey of complementary therapy services provided by hospices. j palliat med ( ): – . . . brenner zr, krenzer me. using complementary and alternative therapies to promote comfort at end-of-life. crit care nurs clin north am ( ): – . . . kutner js, corbin l. the use of complementary and alternative medicine therapies by patients with advanced cancer and pain in a hospice setting: a multi-centered, descriptive study. j palliat med ( ): – . . . tilden vp, drach ll, tolle sw. complementary and alternative therapy use at end-of-life in community settings. j altern complement med ( ): – . . . running a, shreffler-grant j, andrews w. a survey of hospices’ use of complementary therapy. j hosp palliat nurs ( ): – . . . dwyer ll, harris-kojetin ld, branden l, shimizu im. redesign and operation of the national home and hospice care survey, . national center for health statistics. vital health stat ( ). . . sudaan (release . . ). : research triangle institute: research triangle park, nc. . nahin rl, barnes pm, stussman bj, et al. costs of complementary and alternative medicine (cam) and frequency of visits to cam practitioners: united states, . national health statistics reports; no . hyattsville, md: national center for health statistics. . page national health statistics reports n number n january , table . characteristics of hospice care providers, by whether they offer complementary and alternative therapies: united states, provide hospice care provide hospice care only provide both home health and hospice care provider characteristic total offer cat do not offer cat total offer cat do not offer cat total offer cat do not offer cat number total . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , , , , , , , , ownership number percent number percent number percent for profit . . . . . . . . . . . . . . . . . . . . . . . . . . . . . not for profit, including government . . . . . . . . . . . . . location of agency: metropolitan statistical area . . . . . . . . . . . . . . micropolitan and other statistical area , . . . . . . . . , , , , † . . . . . . . . , , † . . . . † . . † . . † , * . † . . † . . . . affiliation chain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . independent . . . . . . . . . . . . . . . . . . . . . . . . . . . total median number of patients served at time of survey . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . median number of hospice patients at time of survey . . , † . . . . , † . . † . † , * . † . major referral source hospital . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . physicians office . . . . . . . . . . . . . . . . . . . . . . . . . all other . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . type of hospice freestanding. . . . . . . . . . . . . . . . . . . . . . . . . . hospital, nursing home, or home health based . . . . . , , , , . . † . . . . . . . . , . . * . † . † . . † . . † . † , † . † . * * . . . * † . . operates dedicated hospice facilities or units yes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . median number of beds . . . . . . . . . . . . . . . . . . . . no . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , . . † . . , . . † . . † , * . * . formal contracts with outside agencies or organizations skilled nursing facility: yes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . no . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , . † . . . , † . * . † . , . * . . hospital yes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . no . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , , . . . . , † . * . † . . † . . . managed care or private insurance provider yes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . no . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , , . . . . , , . . . . . † . . assisted living facility, board and care home, life care, or continuing care retirement community yes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . no . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , , . . . . , , . . . . † . . . . number of years providing hospice care or fewer ( and later) . . . . . . . . . . . . . . . . . more than (prior to ) . . . . . . . . . . . . . . . . . , , . . . . , . . . . , . † . . † . † estimate does not meet standards of reliability or precision because the sample size is between and , or sample size is greater than but has a relative standard error of % or more. * estimate does not meet standards of reliability or precision because the sample size is less than . cat is complementary and alternative therapies. providers were categorized as offering cat, if they offered cat, or had cat providers on staff or contract. all other providers, including those missing information on whether they offered cat, are categorized as not offering cat. . % of providers were missing information on whether they offer cat, although this estimate does not meet standards of reliability or precision because the sample size is less than . a metropolitan statistical area is a county or group of contiguous counties that contains at least one urbanized area of , or more population. may also contain other counties that are economically and socially integrated with the central county as measured by commuting. a micropolitan statistical area is a nonmetropolitan county or group of contiguous nonmetropolitan counties that contains an urban cluster of , to , persons. may include surrounding counties if there are strong economic ties between the counties, based on commuting patterns. other locations are nonmetropolitan counties that are not classified as part of a micropolitan statistical area. includes nursing home; assisted living facility; outpatient medical or surgical center; rehabilitation facility; patient, family, or friends; other home health or hospice agency; insurance provider or payer source; community organization; and other. notes: numbers may not add to totals because of rounding or because totals and percent distributions include a category of unknowns not reported in the table. percentages are based on the unrounded numbers. data source: cdc/nchs, national home and hospice care survey, . n a tio n a l h e a lth s ta tistics r e p o rts n n u m b e r n ja n u a ry , p a g e table . services offered by hospice care providers, by whether offer complementary and alternative therapies: united states, provide hospice care provide hospice care only provide both home health and hospice care do not offer services offer cat cat offer cat do not offer cat offer cat do not offer cat standard standard standard standard standard standard percent error percent error percent error percent error percent error percent error total . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . pastoral services . . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) grief or bereavement counseling. . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) physical therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) medical social services . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) wound care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) respite care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) occupational therapy . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) volunteer services. . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) adls assistance. . . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) speech therapy or audiology . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) skilled nursing . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) pharmacy services . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) durable medical equipment . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) physician services. . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) dietary and nutritional services . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) intravenous therapy . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) referral services. . . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) ethical issues counseling . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) continuous home care . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) respiratory therapy . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) † . († . ) . ( . ) companion services . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) † . († . ) . ( . ) homemaker services . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) enterostomal therapy . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) . ( . ) mental health services . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) † . († . ) . ( . ) † . († . ) transportation services. . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) . ( . ) * (*) † . († . ) meals on wheels . . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) . ( . ) . ( . ) † . († . ) * (*) * (*) podiatry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( . ) † . († . ) . ( . ) † . († . ) * (*) * (*) median number of services provided (excluding complementary and alternative medicine). . . . . . . . . . ( . ) ( . ) ( . ) ( . ) ( . ) ( . ) . . . category not applicable. † estimate does not meet standards of reliability or precision because the sample size is between and , or sample size is greater than but has a relative standard error of % or more. * estimate does not meet standards of reliability or precision because the sample size is less than . (†) standard errors accompanied by a dagger indicate the sample size is between and , or the ratio of the standard error to the reported estimate is percent or more. (*) the standard error is not reported when the sample size for the estimate is less than , which does not meet the standards of reliability or precision. cat is complementary and alternative therapies. providers were categorized as offering cat if they either offered cat or had cat providers on staff or contract or both. all other providers, including those missing information on whether they offered cat, are categorized as not offering cat. . % of providers were missing information on whether they offer cat, although this estimate does not meet standards of reliability or precision because the sample size is less than . providers of hospice care are required to offer the following services to participate in medicare: nursing care (on a -hour basis) provided by or under the supervision of an rn functioning within a medically approved plan of care, medical social services under the direction of a physician, and counseling (including dietary and bereavement counseling) with respect to care of the terminally ill individual and adjustment to death. (source: state operations manual, section b, centers for medicare and medicaid services, department of health and human services. available from: (http://www.cms.gov/certificationandcomplianc/ _hospices.asp.) notes: numbers may not add to totals because of rounding or because totals and percent distributions include a category of unknowns not reported in the table. percentages are based on unrounded numbers. data source: cdc/nchs, national home and hospice care survey, . http://www.cms.gov/certificationandcomplianc/ _hospices.asp p a g e n a tio n a l h e a lth s ta tistics r e p o rts n n u m b e r n ja n u a ry , table . demographics, health, and functional status of discharged patients from hospice, by availability of complementary and alternative therapies: united states, patients discharged patients who received care patients who received care all discharged hospice patients from hospice from provider that offered cat from provider that did not offer cat standard standard standard standard standard number error number error number error number error number error , , ( , ) , ( , ) . . . . , ( , ) . . . . age at discharge under years . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) to years . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) to years . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) years and over . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) sex female . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) male . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) race white. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) nonwhite . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) hispanic or latino origin hispanic or latino . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) not hispanic or latino . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) marital status married or living with partner . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) widowed, divorced, separated, or never married . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) length of service (in days) mean length of hospice care (in days) . . . . . . . . . . . . ( ) ( ) . . . . . . ( ) . . . . . . median length of hospice care (in days) . . . . . . . . . . . ( ) ( ) . . . . . . ( ) . . . . . . level of care routine or continuous home care . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) general inpatient or respite care . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) comatose comatose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) not comatose . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) continence bladder: has catheter or difficulty controlling bladder. . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) no catheter or difficulty controlling bladder . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) bowel: has colostomy, ileostomy, or difficulty controlling bowels. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) no colostomy, ileostomy, or difficulty controlling bowels. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) see footnotes at end of table. n a tio n a l h e a lth s ta tistics r e p o rts n n u m b e r n ja n u a ry , p a g e table . demographics, health, and functional status of discharged patients from hospice, by availability of complementary and alternative therapies: united states, —con. all discharged hospice patients patients discharged from hospice patients who received care from provider that offered cat patients who received care from provider that did not offer cat number standard error number standard error number standard error number standard error number standard error cognitive functioning no cognitive impairment . . . . . . . . . . . . . . . . . . . . . occasional reminders or some assistance . . . . . . . . . . great deal of assistance in routine situations or severe cognitive impairment . . . . . . . . . . . . . . . . . . . . . . , , , ( , ) ( , ) ( , ) , , , ( , ) ( , ) ( , ) . . . ( . ) ( . ) ( . ) , , , ( , ) ( , ) ( , ) . . . ( . ) ( . ) ( . ) activities of daily living (adl) needs help with: to adls . . . . . . . . . . . . . . . . . . . . . . . . . . . . . to adls . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , , ( , ) ( , ) , , ( , ) ( , ) . . ( . ) ( . ) , , ( , ) ( , ) . . ( . ) ( . ) . . . category not applicable. cat is complementary and alternative therapies. providers were categorized as offering cat if they offered cat or had cat providers on staff or contract. all other providers, including those missing information on whether they offered cat, are categorized as not offering cat. . % of providers were missing information on whether they offer cat, although this estimate does not meet standards of reliability or precision because the sample size is less than . all other races. hospice patients who were comatose or in a vegetative state at time of admission to the agency were not assessed for cognitive and adl functioning and were excluded from these estimates. notes: numbers may not add to totals because of rounding or because totals and percent distributions include a category of unknowns not reported in the table. percentages are based on unrounded numbers. data source: cdc/nchs, national home and hospice care survey, . p a g e n a tio n a l h e a lth s ta tistics r e p o rts n n u m b e r n ja n u a ry , table . selected admission diagnoses of discharged patients from hospice, by availability of complementary and alternative therapies: united states, patients discharged patients who received care from patients who received care from provider diagnosis and icd– –cm code from hospice provider that offered cat that did not offer cat standard standard standard standard standard number error number error number error number error number error all discharged hospice patients . . . . . . . . . . . . . . . . . . . . , , ( , ) , ( , ) . . . . , ( , ) . . . . neoplasms ( – , – ) . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) diseases of the circulatory system ( – ) . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) symptoms, signs, and ill-defined conditions ( – ) . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) diseases of the nervous system and sense organs ( – ). . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) diseases of the respiratory system ( – ) . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) diseases of the genitourinary system ( – ) . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) diseases of the digestive system ( – ) . . . . . . . . . . . . . , ( , ) † , († , ) † . († . ) † , († , ) † . († . ) . . category not applicable. † estimate does not meet standards of reliability or precision because the sample size is between and , or the sample size is greater than but has a relative standard error of % or more. (†) standard errors accompanied by a dagger indicate the sample size is between and , or the ratio of the standard error to the reported estimate is % or more. based on the international classification of diseases, ninth revision, clinical modification. cat is complementary and alternative therapies. providers were categorized as offering cat if they offered cat or had cat providers on staff or contract. all other providers, including those missing information on whether they offered cat, are categorized as not offering cat. . % of providers were missing information on whether they offer cat, although this estimate does not meet standards of reliability or precision because the sample size is less than . notes: numbers may not add to totals because of rounding or because totals and percent distributions include a category of unknowns not reported in the table. percentages are based on the unrounded numbers. n a tio n a l h e a lth s ta tistics r e p o rts n n u m b e r n ja n u a ry , p a g e table . demographics, health, and functional status of discharged patients who received care from a hospice provider that offered complementary and alternative therapies, by use: united states, discharged patients who received hospice care patients who received at least patients who did not receive from a provider that one cat from the provider during cat from the provider during characteristic offered cat their hospice stay their hospice stay standard standard standard standard standard number error number error number error number error number error all discharged hospice patients . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . . , ( , ) . . age at discharge under years . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) † , († , ) † . († . ) , ( , ) . ( . ) to years . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) † , († , ) † . († ) , ( , ) . ( . ) to years . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) † , († , ) † . († . ) , ( , ) . ( . ) years and over . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) sex female . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) male . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) race white . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) nonwhite . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) * (*) * (*) , ( , ) . ( . ) hispanic or latino origin hispanic or latino. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) * (*) * (*) , ( , ) . ( . ) not hispanic or latino . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) marital status married or living with partner . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) widowed, divorced, separated, or never married . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) length of service (in days) mean length of hospice care (in days) . . . . . . . . . . . . . . . . . ( ) ( ) . . . . . . ( ) . . . . . . median length of hospice care (in days) . . . . . . . . . . . . . . . . ( ) ( ) . . . . . . ( ) . . . . . . level of care routine or continuous home care . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) general inpatient or respite care . . . . . . . . . . . . . . . . . . . . . , ( , ) † , († , ) † . († . ) , ( , ) . ( . ) comatose comatose. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) * (*) * (*) , ( , ) . ( . ) not comatose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) continence bladder: has catheter or difficulty controlling bladder . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) no catheter or difficulty controlling bladder . . . . . . . . . . . . . , ( , ) † , († , ) † . († . ) , ( , ) . ( . ) bowel: has colostomy, ileostomy, or difficulty controlling bowels . . . . , ( , ) † , († , ) . ( . ) , ( , ) . ( . ) no colostomy, ileostomy, or difficulty controlling bowels . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) see footnotes at end of table. p a g e n a tio n a l h e a lth s ta tistics r e p o rts n n u m b e r n ja n u a ry , table . demographics, health, and functional status of discharged patients who received care from a hospice provider that offered complementary and alternative therapies, by use: united states, —con. characteristic discharged patients who received hospice care from a provider that offered cat patients who received at least one cat from the provider during their hospice stay patients who did not receive cat from the provider during their hospice stay number standard error number standard error number standard error number standard error number standard error cognitive functioning no cognitive impairment . . . . . . . . . . . . . . . . . . . . . . . . . . occasional reminders or some assistance . . . . . . . . . . . . . . . , , ( , ) ( , ) , † , ( , ) († , ) . . ( . ) ( . ) , , ( , ) ( , ) . . ( . ) ( . ) great deal of assistance in routine situations or severe cognitive impairment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , ( , ) , ( , ) . ( . ) , ( , ) . ( . ) activities of daily living (adl) needs help with: to adls . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . to adls . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . , , ( , ) ( , ) , , ( , ) ( , ) . . ( . ) ( . ) , , ( , ) ( , ) . . ( . ) ( . ) . . . category not applicable. † estimate does not meet standards of reliability or precision because the sample size is between and , or sample size is greater than but has a relative standard error of % or more. (†) standard errors accompanied by a dagger indicate the sample size is between and , or the ratio of the standard error to the reported estimate is percent or more. * estimate does not meet standards of reliability or precision because the sample size is less than . (*) the standard error is not reported when the sample size for the estimate is less than , which does not meet the standards of reliability or precision. cat is complementary and alternative therapies. providers were categorized as offering cat if they offered cat or had cat providers on staff or contract. all other providers, including those missing information on whether they offered cat, are categorized as not offering cat. . % of providers were missing information on whether they offer cat, although this estimate does not meet standards of reliability or precision because the sample size is less than . all other races. hospice patients who were comatose or in a vegetative state at time of admission to the agency were not assessed for cognitive and adl functioning and were excluded from these estimates. notes: numbers may not add to totals because of rounding or because totals and percent distributions include a category of unknowns not reported in the table. percentages are based on unrounded numbers. data source: cdc/nchs, national home and hospice care survey, . national health statistics reports n number n january , 	 page technical notes sample design the sampling design for nhhcs was a stratified, two-stage probability design. the first stage consisted of the selection of a stratified sample of agencies. the primary sampling strata of agencies were defined by agency type and metropolitan statistical area (msa) status. the second stage of sample selection was the selection of up to current home health patients per home health agency, up to hospice discharges per hospice agency, and a combination of up to current home health patients and hospice discharges in agencies providing both home health and hospice care. this stage of sample selection was done using a computer algorithm to obtain systematic probability samples of current home health patients and hospice discharges. this study used data only from hospice discharges and hospice care providers. data collection data for nhhcs were collected through personal interviews with agency directors and staff who used administrative records to answer questions about the agencies, staffs, services, and programs, and medical records to answer questions about current home health patients and hospice discharges. the agency component of nhhcs was completed for , agencies. the patient component of the nhhcs was completed for , hospice discharges. the unweighted response rate across the two sampling stages (agency and hospice discharge) was %. the response rate across the two sampling stages (agency and hospice discharge) weighted by the inverse of the probability of selection was %. for further information on the sampling design and data collection, see dwyer et al. ‘‘redesign and operation of the national home and hospice care survey, ’’ ( ). estimation using the complex multistage design of the nhhcs, nchs computed a weight that took all sampling stages into account. this weight was used to inflate the sample numbers to national estimates, and included three other basic components: inflation by reciprocals of selection probabilities, adjustment for nonresponse, and population ratio adjustment. for further information on the nhhcs estimation, see dwyer et al. ‘‘redesign and operation of the national home and hospice care survey, ’’ ( ). standard errors and relative standard errors the standard error (se) is primarily a measure of the sampling variability that occurs by chance because only a sample is surveyed, rather than the entire universe. ses were calculated using taylor series approximations in sudaan. nchs bases publication of estimates for nhhcs on the relative standard error (rse)—also known as the coefficient of variation—of the estimate and the number of sample records on which the estimate is based. the rse is a measure of variability and is calculated by dividing the se of an estimate by the estimate itself. the result is then converted into a percentage by multiplying it by . +	 if the estimate is based on fewer than sample cases, then the value of the estimate is not reported. this is indicated with an asterisk (*) in the tables and figures. +	 if the estimate is based on a sample of – cases or on or more cases and the rse is % or more, then the estimate is reported but should not be assumed reliable. this is indicated with a dagger (†) preceding the estimate in tables and figures. +	 if the estimate is based on or more sample cases and the rse is less than %, then the estimate is reported and is considered reliable. definition of terms terms related to hospice care providers hospice care—focuses on relieving pain and uncomfortable symptoms of individuals with terminal illness and providing emotional and spiritual support to both the terminally ill and their family members. major referral source—respondents were first shown a card and asked what the agency’s patient referral sources were. the card included the following options: . hospital . nursing home . assisted living facility . physician’s office . outpatient medical or surgical center . rehabilitation facility . patient or family or friend . other home health hospice agency . insurance provider or payer source . community organization . other respondents were then asked which of the referral sources identified refers the greatest number of patients to the agency. services offered—the respondent was asked ‘‘which of these services does this agency offer?’’ with additional instruction to include services offered as a result of contractual arrangements. respondents were asked to identify all services from a list on show cards. services were grouped and several show cards were used. the groupings and services included in each group are shown in table i. all agencies missing information on whether the agency provided the service were coded as not providing the service. the number of services an agency provided (excluding complementary and alternative medicine) was summed to create a continuous variable from to . for logistic regressions the number of services was dichotomized based on the mean number of services provided in the sample being analyzed. thus, when the sample was all hospice care providers the mean number of services provided was , and the number of services was divided into providers that offered or fewer services and more than services. for the sample of hospice care only providers the mean was and for agencies providing both home health and hospice care the mean page 	 national health statistics reports n number n january , table i. services offered by hospice care providers service grouping	 services listed • complementary and alternative medicine • dietary and nutritional services • enterostomal therapy • iv therapy • physician services • podiatry services • skilled nursing or nursing services • wound care • durable medical equipment • pharmacy services • occupational therapy • physical therapy • respiratory therapy • speech therapy/audiology • companion services • continuous home care • homemaker services • meals on wheels services • assistance with adls • transportation services • volunteer services • pastoral services/spiritual counseling • mental health services • referral services • respite care • (medical) social services • ethical issues counseling • grief/bereavement counseling medical and skilled nursing . . . . . . . . . . . . equipment and medication . . . . . . . . . . . . personal care . . . . . . . . . . . . . . . . . . . . psychosocial . . . . . . . . . . . . . . . . . . . . . counseling . . . . . . . . . . . . . . . . . . . . . . was . when the sample was all hospice care providers that offered cat, the mean number of services provided was , and the number of services was divided into providers that offered or fewer services, and more than services. complementary and alternative therapies (cat)—for the purposes of this report, an agency that offered cat was defined as one that responded either that they offered cam as a service or said that they had cam providers on staff or as contract personnel. all other agencies, including those missing information, were categorized as not offering cat. the responses were based on the following questions: ) as described above, respondents were asked to identify all services from a list on a show card. complementary and alternative medicine (cam) was one option. if the respondent chose cam he/she was then asked ‘‘which of these complementary and alternative medicine therapies does this agency use?’’ respondents were shown another card and asked to identify all the therapies the agency uses. show card options included: . acupuncture . aromatherapy . art therapy . guided imagery or relaxation . massage . music therapy . pet therapy . supportive group therapy . therapeutic touch . tens (transcutaneous electrical nerve stimulation) . other ) the self-administered questionnaire included the following question: ‘‘does this agency have any of the following types of staff or contract personnel who provide services to patients served by this agency?’’ one of the options was ‘‘complementary alternative medicine (cam) providers.’’ terms related to hospice discharges age—refers to discharge’s age at time of discharge. calculated based on birth date and discharge date. hispanic or latino origin—a person of mexican, puerto rican, cuban, central or south american, or other spanish culture or origin, regardless of race. based on question ‘‘was he/she of hispanic or latino origin?’’ race—consistent with the u.s. office of management and budget’s standards for the classification of federal data on race and ethnicity. respondents were shown a card and asked to select all that applied for the discharge. + american indian or alaska native + asian + black or african american +	 native hawaiian or other pacific islander + white + other for the purposes of data analysis in this report, race was dichotomized to white and other, where other included all categories listed above other than white. marital status—marital status at time of discharge. based on question ‘‘is/was (discharge) married, divorced, separated, never married, or living with a partner in a marriage-like relationship?’’ additional information to be read if necessary was ‘‘at time of discharge.’’ length of hospice care—calculated as the difference between the date of admission and date of discharge. discharges may have been discharged dead or alive. comatose—based on question ‘‘was (discharge) comatose or in a vegetative state at the time he/she was admitted to this agency for hospice care?’’ questions on adl and cognitive functioning were not asked about comatose discharges. continence—refers to when receiving hospice care. respondents were asked whether either discharge had a catheter, a colostomy or ileostomy, and whether they had difficulty national health statistics reports n number n january , page table ii. icd– –cm codes and collaped categories for analysis category icd– –cm codes malignant neoplasms . . . . . – , – diseases of the nervous system and sense organs. . – diseases of the circulatory system . . . . . . . . . . . . . – diseases of the respiratory system . . . . . . . . . . . . . – diseases of the digestive system . . . . . . . . . . . . . – diseases of the genitourinary system . . . . . . . . . . . . . – symptoms, signs, and ill-defined conditions . . . . . – note: icd– –cm is international classification of diseases, ninth revision, clinical modification. controlling bladder during hospice care. if respondents noted the discharge had a urinary catheter, respondents were not asked whether the discharge had difficulty controlling bladder. if respondents noted the discharge had a colostomy or ileostomy, respondents were not asked whether the discharge had difficulty controlling bowels. for this analysis, discharges with either a catheter or difficulty controlling bladder were combined, as were discharges with a colostomy or ileostomy or difficulty controlling bowels. cognitive functioning—these questions were not asked of comatose discharges. based on the following question ‘‘please look at this card and tell me which category best describes (discharge)’s cognitive functioning or current mental status at the time he/she was admitted to this agency for hospice care.’’ respondents were referred to the most recent outcome and assessment information set (oasis) form, item mo . respondents were shown a card and asked which category best described the discharge’s cognitive functioning or current mental status on admission. categories included: . no cognitive impairment . required only occasional reminders in new situations . required some assistance or direction in certain situations (is easily distracted) . required a great deal of assistance or direction in routine situations . severe cognitive impairment (constantly disoriented, comatose, delirium) for the purposes of this report, categories and were combined and categories and were combined and termed ‘‘impaired cognitive functioning.’’ activities of daily living—these questions were not asked of comatose discharges. adls include bathing, dressing, toileting, eating, and transferring. based on response to the following question: ‘‘at admission, did (discharge) need any help from another person with any of the following activities?’’ respondents were asked to refer to the most recent oasis form (items mo , , , , , and ), or if not available, obtain most recent information in records. advance directives—respondents were asked ‘‘now please look at this card and tell me which of the following advance directives are listed in (discharge)’s medical records.’’ respondents were then shown a card with the following options and asked to select all that apply: . living will . do not resuscitate . do not hospitalize or do not send to emergency department . feeding restrictions . medication restrictions . comfort measures only . durable power of attorney . health care proxy or surrogate . organ donation . no advanced directives provided . other for the purposes of this analysis categories – were combined, and categories and were combined. pain management strategies—based on the following question ‘‘according to (discharge)’s medical record, what strategies on this card were used to manage his/her pain’’ respondents were shown a card and asked to select all strategies used. the card contained the following options: . standing order for pain medication . prn order for pain medication . nonpharmacological methods (distraction, heat or cold, massage or positioning, and music therapy) . no strategies specified . other receipt of cat—based on the question: ‘‘what services on this card did (discharge) receive from this agency while a hospice patient?’’ additional information to be read if necessary was ‘‘include services received from (agency) as a result of contractual arrangements.’’ one of the options on the show card was ‘‘complementary and alternative medicine (cam).’’ there was no information on the number of times the discharge received cat, thus the discharge could have received cat only once or multiple times. missing information was coded as not having received the service. level of care—refers to the level of care received at time of discharge. respondents were asked ‘‘which level of hospice care on this card was (discharge) receiving at the time of his/her discharge?’’ they were then shown a card that included the following options: . routine home care for patients receiving hospice services in their homes . continuous home care provided to hours per day primarily by skilled hospice personnel . general inpatient care provided by skilled hospice staff . inpatient respite care to relieve the primary caregiver for the purposes of this analysis, categories and were combined, and categories and were combined. admission diagnosis—based on the following question: ‘‘according to (discharge)’s medical records, what was the primary diagnosis or condition at the time he/she was admitted to this agency (that is, on or around (admission date)’’ diagnoses were coded according to the international classification of diseases, ninth revision, clinical modification (icd– – cm). for analysis, the icd– –cm codes were collapsed into categories as per table ii. page national health statistics reports n number n january , table iii. standard errors for characteristics of providers of hospice care by whether they offer complementary and alternative therapies: united states, provider characteristic provide hospice care provide hospice care only provide both home health and hospice care total offer cat do not offer cat total offer cat do not offer cat total offer cat do not offer cat total . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( ) ( . ) ( . ) ( ) ( . ) ( . ) ( ) ( . ) ( . ) ownership for profit . . . . . . . . . . . . . . . . . . . . . . . . . . . . . not for profit, including government . . . . . . . . . . . . . ( ) ( ) († . ) ( . ) ( . ) ( . ) ( ) ( ) († . ) ( . ) († . ) ( . ) († ) ( ) (*) ( . ) († . ) ( . ) location of agency metropolitan statistical area . . . . . . . . . . . . . . . . . micropolitan and other statistical area , . . . . . . . . . ( ) ( ) ( . ) ( . ) ( . ) ( . ) ( ) ( ) ( . ) ( . ) († . ) ( . ) ( ) ( ) († . ) ( . ) ( . ) ( . ) affiliation chain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . independent . . . . . . . . . . . . . . . . . . . . . . . . . . . total median number of patients served at time of survey . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . median number of hospice patients at time of survey . . ( ) ( ) ( ) ( ) († . ) ( . ) ( . ) ( ) ( . ) ( . ) ( . ) ( ) ( ) ( ) ( ) ( ) († . ) ( . ) ( . ) ( ) († . ) ( . ) ( . ) ( ) († ) ( ) ( ) ( ) (*) ( . ) ( . ) ( ) († . ) ( . ) ( . ) ( ) major referral source hospital . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . physicians office . . . . . . . . . . . . . . . . . . . . . . . . all other . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( ) ( ) ( ) ( . ) ( . ) († . ) ( . ) ( . ) ( . ) ( ) ( ) ( ) ( . ) ( . ) (*) († . ) ( . ) († . ) ( ) ( ) († ) († . ) († . ) (*) ( . ) ( . ) (*) type of hospice freestanding . . . . . . . . . . . . . . . . . . . . . . . . . . . hospital, nursing home, or home health based . . . . . . ( ) ( ) ( . ) ( . ) ( . ) ( . ) ( ) ( ) ( . ) († . ) ( . ) († . ) ( ) ( ) (*) ( . ) († . ) ( . ) operates dedicated hospice facilities or units yes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . mean number of beds . . . . . . . . . . . . . . . . . . . . . median number of beds . . . . . . . . . . . . . . . . . . . . no . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( ) ( . ) ( . ) ( ) ( . ) ( . ) ( . ) ( . ) († . ) ( . ) ( . ) ( . ) ( ) ( . ) ( . ) ( ) ( . ) ( . ) ( . ) ( . ) († . ) ( . ) ( . ) ( . ) († ) ( . ) ( . ) ( ) (*) ( . ) ( . ) ( . ) (*) ( . ) ( . ) ( . ) formal contracts with outside agencies or organizations skilled nursing facility: yes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . no . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( ) ( ) ( . ) († . ) ( . ) ( . ) ( ) († ) ( . ) (*) ( . ) († . ) ( ) ( ) ( . ) (*) ( . ) ( . ) hospital yes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . no . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( ) ( ) ( . ) ( . ) ( . ) ( . ) ( ) († ) ( . ) (*) ( . ) († . ) ( ) ( ) ( . ) († . ) ( . ) ( . ) managed care or private insurance provider yes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . no . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( ) ( ) ( . ) ( . ) ( . ) ( . ) ( ) ( ) ( . ) ( . ) ( . ) ( . ) ( ) ( ) ( . ) († . ) ( . ) ( . ) assisted living facility, board and care home, life care, or continuing care retirement community yes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . no . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ( ) ( ) ( . ) ( . ) ( . ) ( . ) ( ) ( ) ( . ) ( . ) ( . ) ( . ) ( ) ( ) († . ) ( . ) ( . ) ( . ) see footnotes at end of table. national health statistics reports n number n january , page table iii. standard errors for characteristics of providers of hospice care by whether they offer complementary and alternative therapies: united states, —con. provider characteristic provide hospice care provide hospice care only provide both home health and hospice care total offer cat do not offer cat total offer cat do not offer cat total offer cat do not offer cat number of years providing hospice care or fewer ( and later) . . . . . . . . . . . . . . . . . more than (prior to ) . . . . . . . . . . . . . . . . . ( ) ( ) ( . ) ( . ) ( . ) ( . ) ( ) ( ) ( . ) ( . ) ( . ) ( . ) ( ) ( ) ( . ) († . ) ( . ) († . ) (†) standard errors accompanied by a dagger indicate the sample size is between and , or the ratio of the standard error to the reported estimate is percent or more. (*) the standard error is not reported when the sample size for the estimate is less than , which does not meet the standards of reliability or precision. cat is complementary and alternative therapies. providers were categorized as offering cat if they offered cat or had cat providers on staff or contract. all other providers, including those missing information on whether they offered cat, are categorized as not offering cat. . % of providers were missing information on whether they offer cat, although this estimate does not meet standards of reliability or precision because the sample size is less than . a metropolitan statistical area is a county or group of contiguous counties that contains at least one urbanized area of , or more population. may also contain other counties that are economically and socially integrated with the central county as measured by commuting. a micropolitan statistical area is a nonmetropolitan county or group of contiguous nonmetropolitan counties that contains an urban cluster of , to , persons. may include surrounding counties if there are strong economic ties between the counties based on commuting patterns. other locations are nonmetropolitan counties that are not classified as part of a micropolitan statistical area. includes nursing home; assisted living facility; outpatient medical or surgical center; rehabilitation facility; patient, family, or friends; other home health or hospice agency; insurance provider or payer source; community organization; and other. notes: numbers may not add to totals because of rounding or because totals and percent distributions include a category of unknowns not reported in the table. percentages are based on unrounded numbers. data source: cdc/nchs, national home and hospice care survey, . page national health statistics reports n number n january , suggested citation bercovitz a, sengupta m, jones a, harris- kojetin ld. complementary and alternative therapies in hospice: the national home and hospice care survey: united states, . national health statistics reports; no . hyattsville, md: national center for health statistics. . copyright information all material appearing in this report is in the public domain and may be reproduced or copied without permission; citation as to source, however, is appreciated. national center for health statistics edward j. sondik, ph.d., director jennifer h. madans, ph.d., associate director for science division of health care statistics jane e. sisk, ph.d, director u.s. department of health & human services centers for disease control and prevention national center for health statistics toledo road hyattsville, md first class postage & fees paid cdc/nchs permit no. g- official business penalty for private use, $ to receive this publication regularly, contact the national center for health statistics by calling – – – e-mail: cdcinfo@cdc.gov internet: http://www.cdc.gov/nchs dhhs publication no. (phs) – cs t ( / ) http://www.cdc.gov/nchs mailto:cdcinfo@cdc.gov 	abstract 	introduction 	methods 	data source 	data analysis 	results 	the proportion of hospice care providers offering cat 	types of cat offered by hospice care providers 	characteristics of hospice care providers by whether they offered cat 	characteristics of patients discharged from hospice by availability and use of cat 	characteristics of hospice care providers that offered cat by whether at least one discharged patient received at least one cat 	discussion 	references 	technical notes 	sample design 	data collection 	estimation 	standard errors and relative standard errors 	definition of terms 	terms related to hospice care providers 	terms related to hospice discharges 	tables
 © journal of thoracic disease. all rights reserved. j thorac dis ; ( ): - | http://dx.doi.org/ . /jtd. . . introduction updated epidemiological data on the united states (us) population have recently described a continuous reduction trend of lung cancer incidence, even if it still remains the main cause of cancer mortality, estimating , new deaths in men and , in women for the ( % and % of all cancer deaths, respectively) ( ). similarly, in europe lung cancer has the highest incidence rates in both sexes: female incidence has constantly risen up, overtaking breast cancer around , while in female lung cancer deaths have exceeded breast cancer ones ( , versus , ) ( ). according to the world health organization (who) report, cancer is the second leading cause of death globally, and lung cancer has been responsible for an estimated . million deaths in ( ). particularly, in italy we have recently witnessed a small and steady decrease of lung cancer incidence and mortality in men (− . %/year; − . %/year), along with a significant increase among women (+ . %/year; + . %/year) ( ). the patterns of lung cancer incidence worldwide are mainly dependent on tobacco consumption, being smoking habit cause by itself for over % of all lung cancer cases, with exposure to air pollution, radon, or chemicals, as well as a family history of lung cancer, likely accounting for the majority of the remaining cases ( ). improving survival outcomes for the wide population of lung cancer patients means not only a deepener knowledge of disease biology leading the development of new treatment strategies, but also fighting the tobacco epidemic worldwide and concretely acting in terms of prevention. review article on improving outcomes in lung cancer through early diagnosis and smoking cessation improving lung cancer outcomes through smoking cessation: the women against lung cancer in europe (walce) experience enrica capelletto , francesco passiglia , federica ferraresi , stefania vallone , silvia novello department of oncology, university of turin, aou san luigi gonzaga, orbassano, torino, italy; women against lung cancer in europe onlus, orbassano, turin, italy contributions: (i) conception and design: all authors; (ii) administrative support: none; (iii) provision of study materials or patients: none; (iv) collection and assembly of data: none; (v) data analysis and interpretation: none; (vi) manuscript writing: all authors; (vii) final approval of manuscript: all authors. correspondence to: silvia novello, md, phd. department of oncology, university of turin, aou san luigi gonzaga, orbassano, torino, italy. email: silvia.novello@unito.it. abstract: being lung cancer the main cause of cancer-related mortality worldwide, mainly dependent on tobacco consumption, fighting the tobacco epidemic and concretely acting in terms of prevention represents a current urgent need. indeed, it has become clear that the significant reduction in tobacco consumption would result in the prevention of a large fraction of lung cancer cases and other smoking-related diseases. women against lung cancer in europe (walce) is a non-profit european organisation with more than years of experience, whose mission is promoting communication strategies and awareness initiatives, customized on recipients age, to aware public opinion and decision makers on damages of smoking on health and spreading accurate and updated information in order to support people affected by lung cancer and their caregivers. in this review we will provide a summary of walce commitment and experience in the field of smoking cessation and lung cancer prevention. keywords: women against lung cancer in europe (walce); advocacy; smoking; lung cancer; prevention submitted jan , . accepted for publication mar , . doi: . /jtd. . . view this article at: http://dx.doi.org/ . /jtd. . . capelletto et al. the walce experience in lung cancer prevention © journal of thoracic disease. all rights reserved. j thorac dis ; ( ): - | http://dx.doi.org/ . /jtd. . . the international association for the study of lung cancer (iaslc), along with many other scientific societies involved in this field, recognized that the solution to the tobacco problem lies in the primary prevention of tobacco initiation. the iaslc launched in a program called lung ambition alliance with the ambitious goal to double -year lung cancer survival by with different actions worldwide (https://www.lungambitionalliance.com). indeed, it has become clear that the both cancer- and not cancer- related mortality throughout adulthood smokers is – times the mortality observed in never-smokers, meaning an average – years reduction of the overall life-expectancy ( ). another important goal to be pursued is the cessation of smoking attitude by individuals addicted to nicotine, since it has been largely demonstrated that stopping smoking works, leading to a significant gain of life expectancy of about , , and years for people who have stopped at , , or years of age, respectively ( ). the world health assembly called on governments to adopt legislative measures aiming to reduce the smoking prevalence by about % within the year ( ). the who framework convention on tobacco control recommended additional interventions, such as the who six-points mpower initiative, to further reduce tobacco consumption across different countries ( ). the rigorous adoption of several measures by european governments, including limitations to whom and where tobacco can be sold, smoking ban in public places, cigarette price increase, shocking images on packages cover showing the dangerous effects of smoking, produced to an immediate drop out in cigarette consumption. however, additional efforts are needed by governments, scientific societies, health professionals, advocacy groups, journalists, and other opinion leaders, in order to aware public opinion and decision makers on smoking-related damages, since it became clear that a significant reduction in tobacco consumption would result in the prevention of a large fraction of lung cancers. in this review we will provide a summary of women against lung cancer in europe (walce) commitment and experience in the field of smoking cessation and lung cancer prevention. walce mission walce is a non-profit european organisation born in with the primary aim to increase women’s awareness about lung cancer in female population and to support patients and relatives during the difficult path of disease, focusing the attention also on the leading role of women as caregivers ( ). since the first years of activity, walce has been involved in multiple research projects concerning the better definition of gender differences in lung cancer and in primary prevention projects, trough educational materials and communication tools specifically designed and produced by the association. walce also provides updated news about lung cancer, in terms of risk factors, early diagnosis, treatment modalities and related side effects, offering to patients and relatives the possibility to be adequately supported during the cancer care program, through an active involvement in multiple educational activities. walce primary prevention campaigns according to its mission, walce aims to promote communication strategies to aware public opinion and decision makers on damages of smoking on health. walce is coordinating different awareness initiatives, customized on recipients age. the idea to create prevention campaigns about tobacco damage on health on the basis of the different characteristics of the target population (age, sex, peculiar period of life, such as pregnancy), as well as the adopted communication channel for the campaign, is the real strength of the association and, probably, the reason of the success achieved across the last years. children campaign aimed at – -year-old pupils, “i’m not smoking that” (figure ) is a primary prevention campaign on smoking side effects on health endorsed by the national institute of health, offered by walce (for free) to italian primary schools. after conducting a pilot experience, this primary prevention campaign started in , immediately achieving great success. it is based on simple stories of everyday life, told by the protagonist children, characters in which pupils can easily identify themselves in order to tackle, with gradualness and lightness, important topics concerning h e a l t h . t h r o u g h a n e d u c a t i o n a l k i t ( c o m p o s e d b y entertaining and illustrative contents specifically designed for children) in classrooms, teachers may promote positive attitudes aiming at healthy lifestyle and deviating from the smoking habit. walce also facilitates the intervention of a pulmonologist, when request by teachers who are able to journal of thoracic disease, vol , no july © journal of thoracic disease. all rights reserved. j thorac dis ; ( ): - | http://dx.doi.org/ . /jtd. . . interactively illustrate the scientific aspects related to the innumerable smoking associated damages. to date, over , pupils and , student classes have already joined the campaign. this material is available in italian, french and english language. teens campaign the book entitled “ash of stars – cinema, smoking habit and adolescents” focuses great attention on adolescence, pointing out the link between smoke scenes in recent movies and this habit in general population, especially in teens. european countries do not have any kind of legislation concerning the regulation of movies containing this type of scenes: walce aims to introduce stricter rules to limit the possibility of young people to access film containing unjustified smoking scenes and to avoid that movies become an instrument for tobacco advertising. basing on cinematography, this book is a useful tool for teachers to stimulate discussion among students about smoking prevention and awareness programs. the idea to design a prevention campaign dedicated only to teens rose from epidemiological data showing as the first cigarette is lit usually before the age of ( ); in italy . years, . for boys, . for girls ( ). in the past few years, we are witnessing an increasing attitude to smoke among italian teenagers, with % of “baby smokers” reported in , representing one of the highest percentages in europe. teens are the most vulnerable part of society, but also those most exposed to smoking damages, since they are still growing, easily driven by emulation and influenced in their habits by unsuitable educational models. the step succeeding “ash of stars” has been “blaam”, a digital project using an app as a tool, where people can point out smoke scenes in movie or tv series. the purpose of this project is to increase the awareness about the negative effects that smoking can produce (especially on teens) in movie scenes. the ambition is to attract the attention of the world of cinema on this topic and make it able to expose simple warnings before any movies. communication tools and initiatives for adult population walce has also created a motivational web-based video, easy to use and extremely informative for the young-adult population illustrating smoking damage and the potential advantages derivated from quitting ( ). this tool has been realized with the participation of exceptional testimonials (top-models, actors and sportsmen extremely popular in italy and whose image was easily reconnected to a healthy lifestyle), and its capillarization still remains fundamental for the good performance of the same. walce pursues the primary prevention aim through a campaign “in the field” named “go out of the tunnel. don’t burn away your future”, a smoking prevention program addressed to general public, media and political institutions. this campaign consists on a structure shaped as a giant cigarette committing pulmonologists and oncologists to perform counseling, display educational materials on smoking cessation and provide a basic spirometry test to people attending. in italy “go out of the tunnel” has been organized as a roadshow and, between and , it has toured nine major italian cities (figure ). over , people visited the tunnel, involving groups of heterogeneous age (young people, adults and elderly) with more than , spirometries performed. the program has been endorsed by the italian parliament, and during the past years many celebrities and politicians have attended the tunnel in order to sensitize media and political institutions to the tobacco problem. at european level, during the world no-tobacco day figure “i’m not smoking that”, the walce’s primary prevention campaign designed for children (photo: original source, property of walce). walce, women against lung cancer in europe. capelletto et al. the walce experience in lung cancer prevention © journal of thoracic disease. all rights reserved. j thorac dis ; ( ): - | http://dx.doi.org/ . /jtd. . . , a -day tunnel exhibition took place in brussels. as result, spirometry have been performed and people of any age, mainly smokers, joined the tunnel asking information regarding smoke-related diseases and smoking cessation programs. in walce, in cooperation with two major spanish organizations, “fundación mÁs que ideas” and “aeacap-asociación española del cáncer de pulmón”, and endorsed by the iaslc, the lung ambition alliance and “fondazione insieme contro il cancro”, promoted a “go out of the tunnel” event focused on primary prevention and awareness on lung cancer, during the th world conference on lung cancer—wclc , that took place in barcelona, spain. during this -day exhibition, people visited the tunnel and spirometries have been performed. pregnant women in order to complete the needs overview, in november walce organised a smoking cessation campaign addressed to pregnant women, entitled “hope it’s the last one”; the program was accompanied by a funny toy designed for the newborn child: “ector the protector bear”, a teddy bear able to coughs if exposed to smoke. in parallel, a counseling service was also offered by gynecologists and pulmonologists, to promote healthy lifestyles. other relevant activities website in the era of communication, digital reality is characterized by a fast stream of knowledge and a wide complexity of web-based articles which overtake the conventional communication modalities (newspapers, radio, television and often also scientific communications); in this context, for non-professionals, the possibility to discern between real and fake news is a right that must be protected. the walce website is one of the most relevant “communication tools” of the association, addressed to patients, friends, family members and anyone interested in knowing more about thoracic cancers. through constant updating, the site provides everyone recent information, scientifically founded and controlled, accessible also for “non-sanitary” users. figure “go out of the tunnel. don’t burn away your future”, the prevention campaign offered by walce to general public, media and political institutions (photo: original source, property of walce). walce, women against lung cancer in europe. journal of thoracic disease, vol , no july © journal of thoracic disease. all rights reserved. j thorac dis ; ( ): - | http://dx.doi.org/ . /jtd. . . patients’ support primary walce’s missions is to inform, educate and support lung cancer patients and their families offering them orientation and updated services. to answer this need, the association has created many information booklets, specifically designed for patients, including relevant issues in thoracic oncology, such as cancer diagnosis, modern strategies of treatment, management of side effects, smoking cessation strategies and disease communication skills within the family (with a particular attention to children). the booklets, available in italian and english, are currently distributed during national and international scientific events by oncologists, pulmonologists, radiotherapists, p h a r m a c i s t s , t h o r a c i c s u r g e o n s a n d f a m i l y d o c t o r s throughout the national territory. november was declared by the global lung cancer coalition “month of worldwide awareness of lung cancer”, and on this occasion walce organizes numerous initiatives, including “how to feel better with a make- up”. since the first years of activity, in collaboration with oncology departments in italy and other european cities, make-up laboratories are dedicated to patients undergoing cancer treatments, with the aim of sensitizing the population towards the pathology, give patients the opportunity to enhance their appearance and personality during such difficult period of their life, but also to favor those centers where programs like this do not exist on a regular basis. other activities offered to patients and caregivers during the path of illness are: “the mindfulness course”, small group events carried out with the close collaboration of psycho-oncologists in order to teach patients techniques that aim not to focus on the disease, but to develop freedom to live beyond cancer and strengthen internal and external resources by acquiring greater self-confidence; courses of relaxation techniques, art therapy workshops and open-air pet therapy with trained dogs; cooking lessons for patients and family members, carried out with experienced chefs on natural cuisine, able to illustrate the natural properties of some foods and put them into practice in recipes for daily use. patients’ care finally, in the recent years with the collaboration of some pharma companies and european researchers, has born epropa, a lung cancer patients support program designed and promoted by walce to offer equality in access to test, drugs and clinical trials across europe. epropa main goal is to create a free-of-charge molecular screening platform for tumour characterization, in order to increase the detection of oncogenic drivers in lung cancer patients. the program will ensure teleconsulting to a national reference centre for patients with lung cancer to share clinical and pathological data. tissue and plasma samples will be shipped to central laboratory for molecular screening and, on the basis of the results, to assess potential eligibility for therapeutic biomarker-driven clinical trials across europe. the estimated turn-around time form samples shipment and tests results will be of working days from sample reception. if the results will open the opportunity to enter in a dedicate clinical trial and the patient accepts to participate to this, epropa will help patients to reach the closest site where such study is available, covering for the cost of journey and staying of both patient and one caregiver during the experimental treatment. this extremely ambitious program well explains the heart of walce activity and its mission, in order to facilitate patient’s approach to the disease and optimize cancer treatment. conclusions today, the best way to create a safe and large support network for cancer patients and achieve a multidisciplinary management of the disease, is the steady involvement of dedicated advocacies and patient associations together with professionals involved in this field. after more than years from the first steps moved within the complex reality of patients’ care and families’ support, walce is now a well-established and recognised international association in the field of lung cancer: its dynamic activities, the careful care to any constituent of the society and its needs, the great energy of members and association friends in every initiatives, make walce an example of patients advocacy largely committed to its mission and deeply integrated with other professionals involved in lung cancer care. acknowledgments funding: none. footnote provenance and peer review: this article was commissioned by the guest editor (alfredo tartarone) for the series “improving outcomes in lung cancer through early diagnosis capelletto et al. the walce experience in lung cancer prevention © journal of thoracic disease. all rights reserved. j thorac dis ; ( ): - | http://dx.doi.org/ . /jtd. . . and smoking cessation” published in journal of thoracic disease. the article was sent for external peer review organized by the guest editor and the editorial office. conflicts of interest: all authors have completed the icmje uniform disclosure form (available at http://dx.doi. org/ . /jtd. . . ). the series “improving outcomes in lung cancer through early diagnosis and smoking cessation” was commissioned by the editorial office without any funding or sponsorship. ec reports personal fees from msd, personal fees from astrazeneca, personal fees from boehringer ingelheim, outside the submitted work. sn reports personal fees from eli lilly, personal fees from msd, personal fees from roche, personal fees from bms, personal fees from takeda, personal fees from pfizer , personal fees from abbvie, personal fees from celgene, personal fees from astrazeneca personal fees from boehringer ingelheim, outside the submitted work. the authors have no other conflicts of interest to declare. ethical statement: the authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. open access statement: this is an open access article distributed in accordance with the creative commons attribution-noncommercial-noderivs . international license (cc by-nc-nd . ), which permits the non- commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant doi and the license). see: https://creativecommons.org/licenses/by-nc-nd/ . /. references . siegel rl, miller kd, jemal a. cancer statistics, . ca cancer j clin ; : - . . malvezzi m, carioli g, bertuccio p, et al. european cancer mortality predictions for the year with focus on breast cancer. ann oncol ; : - . . data available at: https://www.who.int/news-room/fact- sheets/detail/cancer . the numbers of cancer in italy . available online: https://www.aiom.it/i-numeri-del-cancro-in-italia/, accessed on october, th, . . gbd risk factors collaborators. global, regional, and national comparative risk assessment of behavioural, environmental and occupational, and metabolic risks or clusters of risks, - : a systematic analysis for the global burden of disease study . lancet ; : - . . jha p, ramasundarahettige c, landsman v, et al. st- century hazards of smoking and benefits of cessation in the united states. n engl j med ; : - . . jha p, peto r. global effects of smoking, of quitting, and of taxing tobacco. n engl j med ; : - . . data available at: https://www.who.int/nmh/events/ncd_ action_plan/en/ . data available at: https://www.who.int/tobacco/global_ report/ /en/ . available online: http://www.womenagainstlungcancer.eu/ . cdc. centers for disease control and prevention. data available at: https://www.cdc.gov/tobacco/data_statistics/ fact_sheets/youth_data/tobacco_use/index.htm . data available online: https://www.doxa.it/fumo-in- italia- . available online: http://www.womenagainstlungcancer.eu/ smetti-di-fumare/ cite this article as: capelletto e, passiglia f, ferraresi f, vallone s, novello s. improving lung cancer outcomes through smoking cessation: the women against lung cancer in europe (walce) experience. j thorac dis ; ( ): - . doi: . /jtd. . . sickness and abnormal behaviors as indicators of animal suffering relations – .i - june http://www.ledonline.it/relations/ sickness and abnormal behaviors as indicators of animal suffering michele panzera laboratory of veterinary comparative ethology, department of veterinary science, university of messina, italy doi: . /rela- - -panz mpanzera@unime.it abstract the welfare status of an animal represents the integrated outcome of all sensory and other neural inputs from within its body and from the environment. these inputs are processed and interpreted by the animal’s brain according to its species-specific and individual nature and experiences, and then are perceived consciously. that being said, for an animal to be able to perceive states that we believe would reflect its welfare, the animal must be alive and con- scious, and it must also be sentient. previous studies, which i cite and describe further later in this paper, show that the brains of animals, especially mammals, have enough complexity to process mental states. the mental abilities of an animal arise as a result of sensory and other neural inputs linked to nutritional, environmental, health and behavioral components of physical or functional abilities. they are also linked to cognitive-neural inputs and activity related to external challenge. all of these components are integrated and expressed mentally as varying degrees of thirst, hunger, weakness, debility, breathlessness, nausea, sickness, pain, distress, fear, anxiety, helplessness, boredom and so on. keywords: bioethics, animal welfare, sentient, feelings, behavior, allostasis, stress, depression, cytokines, sickness behavior. . introduction many scientific reports have shown that even animals possess the physi- ological requirements to be considered ‘sentient’. possessing a mastery of sentience, from a bioethical point of view, means that animals are not only objects of moral duties but also that they are the owners of rights. pain per- ception in animals, in terms of physiological mechanisms of pain detection, has been indirectly confirmed by using central and peripheral analgesics on experimental animals in pharmaceutical research. in light of these findings, cognitive ethological studies have also found that animals can translate the http://www.ledonline.it/relations/ michele panzera relations – .i - june http://www.ledonline.it/relations/ central representation of pain perception not only as physical hurt but also as emotional suffering. further experimental research has shown that emo- tional suffering can be generated through behavioral deprivation induced by an intensive farming system. it is clear that an animal’s ‘quality of life’ depends on its possibility to express natural behavior. an animal’s emo- tional suffering induces metabolic modifications that alter the organoleptic properties of animal products. . the adaptive response of stress scientific analysis of animal welfare have used a wide range of indicators as proxy measures of an animal’s wellbeing (broom and johnson ; squires ; webster ). these indicators can be divided into four categories: pathological, physiological, behavioral and productive (smidt ). classically, stress is defined as a threat to physiological and emo- tional homeostasis to which the organism, in order to survive, responds with a large number of adaptive responses. stress can be either acute or chronic. chronic stress is at times referred to as ‘distress’. it has been sug- gested that chronic stress can act as a predisposing factor in the onset of ill- ness, especially in humans affected by depression, and that an individual’s ability or lack of ability to cope with stress may be a predisposing factor to psychiatric illness (zacharko and anisman ; willner ; leonard and song ). because of these findings, physiological indicators have been used to measure animal welfare. examples of these indicators include cortisol and beta-endorphin levels; assessments related to the nutritional status of the animals; and pathologic changes in specific tissues (such as heart, muscle, liver, adrenal glands, etc.) (barbieri and nassuato ). any evaluation of physiological indicators should take into consideration the age of animals, as there is evidence that the ability to experience stress and pain is different in young animals than it is in adult animals (fitzgerald ; efsa ). in addition, animal welfare can be measured by study- ing an animal’s behavioral responses to stressful situations. for example, one could measure the apparent motivation of an animal to obtain access to desired objects (such as food, a companion, or bedding) or to perform some specific behavior (feeding, social interactions, etc.) (veissier et al. ). the stress response is a conserved, physiological coping reaction to adverse environmental conditions. examples of adverse environmental conditions can include physical or psychological constraints, injuries, trauma, poor microclimate and infectious diseases. under these circum- sickness and abnormal behaviors as indicators of animal suffering relations – .i - june http://www.ledonline.it/relations/ stances, immune responses such as stress and inflammation are an ances- tral, overlapping set of responses aimed at neutralizing the stimuli perturb- ing homeo stasis (ottaviani and franceschi ). the complex interaction between the immune system and the stress/inflammation complex has mainly developed through the phylogenetic evolution of vertebrates in which a redundant, diversified system of cytokines and chemokines develops. behavioral responses to psycho-sensorial stimuli and immune responses to antigenic stimuli can be viewed as two subsystems of an inte- grated complex aimed to provide optimal conditions for the host’s survival and adaptation. this integrated complex is based on a signalling feedback network regulated by neuroendocrine and immunological mediators. acute and chronic stress conditions have repercussions not only on an animal’s physical homeostasis, but also on its emotional homeostasis. allostasis is an adaptive and dynamic strategy, actuated by complex living organisms to maintain a balance between their own physiological systems – involved in homeostasis process – and the external environment, in response to both predictable and unpredictable events (mcewen ; mcewen and wing- field ). . short and acute stress this allostatic system is elicited by animals through different coping strate- gies based on the type and duration of stress stimuli. the hypothalamus pituitary adrenal-axis (hpa-axis) system and hypothalamus pituitary gonads-axis (hpg-axis) system are activated when an animal is under short-term stress conditions and exhibiting proactive and reactive coping strategies, and fight/flight reactions. animals actuate these physiological and behavioral modifications during daily routines that have an energetic ‘cost’ for an organism such as feeding, sheltering, breeding, and migration. these well-known physiological and behavioral responses are regulated by the sympathetic branch of the autonomic nervous system. simultaneously, activation of the hpa-axis induces the release of corticotrophin realising factor (crf) by the hypothalamus, stimulating synthesis and release of the adrenocorticotropic hormone (acth) which in turn stimulates the adrenal glands to activate the glucocorticoid hormones and increases levels of catecholamine (adrenalin and/or noradrenalin). severe or long-term stress can lead to a disturbance of physiological and behavioral homeosta- sis and an emotional state identified as distress, which includes reduced productive or reproductive fitness, passive coping strategies and illness. depression in humans is characterized by high levels of crf which causes michele panzera relations – .i - june http://www.ledonline.it/relations/ hpa-axis over-activation. hypercortisolaemia is also a common abnormal- ity found in depression in human patients (owens and nemeroff ; dinan ). in fact, in depressed subjects, there seems to be a defect in the inhibitory cortisol feedback mechanism which acts on crf secretion, leading the organism to maintain elevated cortisol levels and reduced immunological activity (dinan ). moreover, cytokines and prostaglan- dins mediate sickness behaviors, such as lethargy, anorexia, curtailment of social and reproductive activities (hart ). they have also been associ- ated with a concurrent decrease in learning and in memory – both of which are maladaptive responses towards an unsuitable environment (dunn and swiergiel ; dantzer ). cytokines are secreted in response to both infectious and non-infectious stimuli, such as experimental stress condi- tions in rodents has shown (lemay, vander, and kluger ; zhou et al. ; shintani et al. ; deak et al. ). friedman et al. demonstrated the capacity of cytokines to enter the central nervous system (cns) after an increase in the permeability of the blood brain barrier (bbb) in mice subjected to an acute swim stress (friedman et al. ). additional studies have attempted to evaluate and characterize the controversial role of bbb permeability under stress condi- tions (minami et al. ; goujon et al. ; plotkin et al. ; ovadia et al. ). currently, it is postulated that cytokines produced in the periphery organs act predominantly on the circumventricular organs within the brain, particularly via the organum vasculosum of the laminae terminalis (ovlt) (hopkins and rothwell ). bbb permeability is not as dense in the circumventricular organs as it is in other parts of the brain. at the ovlt, cytokines are believed to bind to glial cells, which in turn produce cytokines and other mediators such as prostaglandins, particularly pge . other studies have shown the presence of an active transport mechanism that could be the way of entry through the bbb when plasma concentra- tions of cytokines are very high (banks, kastin, and durham ; banks et al. ). cytokines and their receptors have been identified in many tissues, including in the peripheral and central nervous system (schobitz, hols- boer, and ron de kloet ). histochemical studies using rodent and human tissues have revealed that il- , il- and tnf-alpha are expressed in neurons and glial cells within the cns under non-inflammatory con- ditions, albeit in small quantities (schobitz, holsboer, and ron de kloet ). thanks to their general properties of pleiotropism, redundancy, syn- ergism and antagonism, cytokines have an integrated and interdependent sickness and abnormal behaviors as indicators of animal suffering relations – .i - june http://www.ledonline.it/relations/ function in the immunological system. they operate within a complex network and may act either synergistically or antagonistically, thus influ- encing the production of cytokines from other cell types and inducing a consequent neuroendocrine and immune response associated with behav- ioral changes. however, the exact relationship between cytokines and char- acteristics of depression remain to be identified. elevated cytokines levels (e.g. il- , il- , tnf-alpha, ifn-gamma) contribute to some aspects of the abnormal behaviors in animals and atypical symptomatology, including increase in sleeping, muscle fatigue, and decrease of eating (dantzer ; dantzer ; anisman and merali, ). altered cytokine activity seen in animal and/or human depression may actually be caused by increased stressor perception (or actual experience) and is believed to be based spe- cifically on the duration of the stress. situations which cause discomfort, such as unsuitable environment or lifestyle conditions, lead to a reduced perception of uplifting events and increased feelings of loneliness with con- sequent physiological and emotional alterations, where cytokines have an important role as biomodulators (ravindran et al. ; ). . stress and animal welfare animals kept in laboratories and/or intensive housing systems are exposed to different stress situations and often do not have the possibility to avoid aversive stimuli by showing specific adaptive reactions. broom stated that welfare is poor when the individual has difficulty in coping with its environment (broom ). when the environment also causes a reduced fitness level, an animal may fail to cope with stress, and abnormal sickness behaviors may occur (wiepkema ; dantzer ; cronin, wiepkema, and hofstede ; wechsler ; mcewen ; mcewen and wing- field ). the protection and the welfare requirements for animals is an area cov- ered by a wide range of eu legislation (these protections are created most commonly in the interest of guaranteeing the quality of animal products such as meat, eggs, and milk). consumers are sensitized to animal welfare campaigns because of slogans like “the quality of food depends on health and welfare of the animal that produce it”. because we have witnessed a demonstration of animals’ negative ‘capacity’, such as pain and suffering, we must intuitively consider the possibility that animals also have positive ‘capacity’, such as intention, expectation and gratification. both of these capacities ensure emotional homeostasis. many studies have found that animals in intensive husbandry michele panzera relations – .i - june http://www.ledonline.it/relations/ systems are unable to express a normal range of behavioral patterns. the occurrence of abnormal behavior in animals is therefore an expression of a central alteration of their emotional sphere. to prevent poor welfare, indicative of a poor physical and emotional state, housing systems should be designed to allow animals to perform specific behavioral habits and achieve physical and behavioral homeostasis. . conclusion from an anthropocentric view, animals are often considered only for their utility for humans – but this should not always be so. mental and physical integrity, in a holistic sense, determine an animal’s capacity. it’s possible to ensure this integrity through the satisfaction of all animal needs – all of which can be achieved through different animal behaviors. if animal integ- rity is injured then altered emotional homeostasis can eventually translate to abnormal behavior. animal integrity is ensured when animals can live in an environment that allows them to manifest 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integrated approach. current topics in veterinary medi- cine and animal science, edited by pieter r. wiepkema and pieter w.m. van adrichem, - . the hague, the netherlands: martinus nijhoff. willner, paul. . “s- - pharmacology of anhedonia”. european neuropsychop- harmacology ( ): . doi: . / - x( ) - . zacharko, robert m., and hymie anisman. . “stressor-induced anhedonia in the mesocorticolimbic system”. neuroscience & biobehavioral reviews ( ): - . doi: . /s - ( ) - . zhou, daohong, et al. . “exposure to physical and psychological stressors elevates plasma interleukin : relationship to the activation of hypotha- lamic-pituitary-adrenal axis”. endocrinology ( ): - . doi: . / en. . . . d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access activities outside of the care setting for people with dementia: a systematic review nathan martin d'cunha , , stephen isbel, andrew j mckune, , jane kellett, , nenad naumovski , to cite: d'cunha nm, isbel s, mckune aj, et al. activities outside of the care setting for people with dementia: a systematic review. bmj open ; :e . doi: . / bmjopen- - ► prepublication history for this paper is available online. to view these files, please visit the journal online (http:// dx. doi. org/ . / bmjopen- - ). received may revised july accepted august school of rehabilitation and exercise sciences, faculty of health, university of canberra, bruce, australian capital territory, australia functional foods and nutrition research (ffnr) laboratory, university of canberra, bruce, australian capital territory, australia discipline of biokinetics, exercise and leisure sciences, school of health sciences, university of kwazulu- natal, durban, south africa correspondence to dr nenad naumovski; nenad. naumovski@ canberra. edu. au original research © author(s) (or their employer(s)) . re- use permitted under cc by- nc. no commercial re- use. see rights and permissions. published by bmj. abstract objectives to summarise the evidence from interventions investigating the effects of out of care setting activities on people with dementia living in residential aged care. design a systematic review. methods a systematic search of electronic databases (pubmed, psycinfo, scopus, web of science and the cochrane library) was performed to identify intervention trials published from journal inception to january . controlled trials, or quasi- experimental trials, which measured pre- intervention, post- intervention or during- intervention outcomes, where the participants were required to leave the care setting to participate in an intervention, were eligible for inclusion. quality appraisal of the studies was performed following the cochrane collaboration’s risk of bias or newcastle- ottawa scale tools. results of the articles screened, articles met the inclusion criteria from different studies. the number of participants in the studies ranged from to people living with dementia and lasted for weeks up to months. the interventions were aquatic exercise, wheelchair cycling, art gallery discussion groups, an intergenerational mentorship programme, horse riding, walking and outdoor gardening. overall, the studies indicated preliminary evidence of psychological (n= ), physical (n= ) and physiological (n= ) benefits, and all interventions were feasible to conduct away from the aged care facilities. however, the low number of participants in the included studies (n= ), the absence of a control group in all but three studies, and potential for selection bias, limits the generalisability of the findings. conclusions activities outside of the residential aged care setting have the potential to be effective at providing a range of benefits for people living with dementia. higher quality studies are required to encourage care providers to implement these type of activities in dementia care settings. prospero registration number crd . background a high proportion of people living in residen- tial aged care facilities (racf) (also known as nursing homes, long- term care, care homes and assisted living among others) are living with dementia. generally, people living with dementia in racf have more progressive dementia and greater physical limitations than those living in the community and often require high levels of care. as such, there is increasing recognition of the importance of providing high- quality, - hour care in racf and dementia care settings. while the quality of care and the care environment is undoubtedly critical to health outcomes, access to meaningful activities and leisure in these settings can enhance physical func- tioning and cognitive and mental health. person- centred care is based on respecting the values and priorities of the person and in racf as it promotes quality of life, dignity and autonomy. psychosocial interventions and meaningful activities for people with dementia can form an important part of person- centred care and include engagement with art and music, use of assistive technology, life story work and horticultural therapy. previous studies have indicated that psycho- social interventions provide positive effects on mood, apathy and have the potential to reduce depression in people living in racf. with the exception of horticultural therapy, which typically occurs outdoors but on the premises of racf, these activities commonly occur indoors. several reviews have evalu- ated the effects of psychosocial interventions across community and racf settings which promote beneficial psychological, physical and cognitive effects. – however, to the best strengths and limitations of this study ► to the best of our knowledge, this is the first sys- tematic review to examine the effects of activities outside of the care setting in people with dementia. ► the different types of interventions with quantitative results are summarised, appraised and their bene- fits discussed. ► only different interventions from publications were identified, highlighting a need for more re- search in this area. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m http://bmjopen.bmj.com/ http://orcid.org/ - - - http://orcid.org/ - - - http://crossmark.crossref.org/dialog/?doi= . /bmjopen- - &domain=pdf&date_stamp= - - http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access of our knowledge, there has not been a consolidation of the evidence relating to the effects of participating in meaningful activities outside the racf setting, on people living with dementia. although it is established that being outdoors reduces stress and anxiety in people with dementia, safe and regular access to meaningful activi- ties outside of the racf are typically not possible without assistance from family or care staff. recently, connecting people to their community and the outdoors is becoming an increased focus of aged care models as part of person- centred care principles and dementia- friendly communi- ties. activities outside of the care setting for older people and people with dementia have the potential to enable them to engage with the broader community, and have sense of community, contribution, belonging and social connectedness. these activities may also be activities they engaged in before moving to the racf. therefore, we systematically examined the literature which tested psychosocial interventions that enabled people living with dementia to leave the care setting to participate in activities outside of the racf. the findings of this review will provide clarification to the current evidence base, with the aim to determine which interventions are the most effective in promoting well- being in this population as well as identify priority areas for future research. methods protocol and registration methods for this systematic review followed the check- list from the preferred reporting items for systematic reviews and meta- analyses (prismsa) guidelines. patients and the public were not involved in the design, conduct, reporting or dissemination of this research. selection criteria all comparative quantitative intervention studies, excluding case studies, were included. a picos (popu- lation, intervention, comparator, outcomes and setting) approach was used to guide the structure of the system- atic review: ► population: human participants living in racf (also referred to as long- term care, nursing home, care home and residential care) with any form of dementia or cognitive impairment. ► intervention: controlled trials, or quasi- experimental trials, which measured pre- intervention, post- intervention or during- intervention outcomes, where the participants left the racf setting to participate in the intervention. ► comparator: using an active control condition, usual care or comparing pre- intervention and post- intervention outcomes. ► outcomes: any quantitative methods evaluating participant outcomes (directly or indirectly), which measure psychological health and well- being. ► setting: participants must be living in the racf. search strategy electronic database searches of pubmed, psycinfo, scopus, web of science and the cochrane library were performed for articles published from database inception to january . the keyword search was: dement* or alzheimer* or ‘cognitive impairment’ and psychoso- cial or non- pharmacological or ‘leisure activities’ or ‘activity programme’ or outdoor* or outside or horti- cultur* or museum or gallery or music or dance or choir or cafe or theatre or theatre or film or movie* or ‘meaningful activity’ or ‘occupational therapy’ and ‘aged care’ or institution* or ‘nursing home’ or ‘long term care’ or ‘care home’ or ‘residential care’ (online supplemental file). the reference lists of all included studies, and related existing systematic reviews, were searched for additional relevant articles. the searches were re- run prior to finalisation of the data analysis on the may . study selection and data extraction eligible studies met the following criteria: use a controlled study design, or compared pre- intervention and post- intervention effects; involved human participants of any age living in racf with dementia or cognitive impair- ment; and quantitatively examined the effects of an inter- vention which required participants to leave the racf setting. studies were excluded if they were epidemiolog- ical or qualitative studies, reviews, abstracts, conference papers or study protocols. two authors (nmd and nn) independently performed the searches using covidence systematic review software (veritas health innovation, melbourne, australia). following the removal of duplicates, articles were excluded based on title and abstract screening using the selection criteria. for articles where this was unclear, the article was carried forward into the full- text review. the full- text of each article was read and assessed by the same authors, and independently evaluated to determine if all selection criteria were met. the authors met to discuss each article, and a third author (si) was present to resolve disagreements. a customised data extraction form was used to enter data from each article by one author (nmd) and cross- checked by a second author (si). this included the aims, study design, description of the intervention, details of selection criteria (eg, severity of dementia (where appli- cable), age and level of care), outcomes and measures, and results. for included studies that used mixed- methods, only the quantitative results were presented and discussed. in addition, if studies included people with dementia living in racf and in the community, only the data from the participants in the racf were presented where possible. the results of the included studies were synthesised quantitatively and qualitatively. quality assessment due to the broad inclusion criteria, two risk of bias tools were used independently by two researchers o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m https://dx.doi.org/ . /bmjopen- - https://dx.doi.org/ . /bmjopen- - http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access (nmd and si). for randomised controlled trials, the cochrane collaboration’s risk of bias tool was used. the criteria for this tool assesses risk of bias for sequence generation, allocation concealment, blinding of participants, personnel and outcome asses- sors, incomplete outcome data, and selective outcome reporting. for each criterion, studies were assessed for risk of bias as low, unclear or high. for non- randomised and quasi- experimental studies, the newcastle- ottawa scale (nos) for non- randomised studies was used for the quality assessment. the nos assesses meth- odological quality based on participant selection, comparability of treatment groups and outcome ascer- tainment with a maximum score of . currently, there is no recommended tool to assess quality for quasi- experimental studies with only a treatment group, the highest possible score for these studies was as previ- ously described. results study selection the systematic review search resulted in records for screening and duplicates were removed. ten arti- cles were identified through searching of the reference lists of relevant systematic reviews and included articles. following title and abstract screening, references remained for full- text review. in total, records were excluded. in order, the articles were excluded because they failed the inclusion criteria for the following reasons: not published in english (n= ), not a journal article (conference abstract or not peer reviewed) (n= ), wrong study design (qualitative study or survey) (n= ), wrong population (participants not living with dementia, or participants not living in racf) (n= ) and wrong intervention (intervention did not require participants to leave the racf (n= ). one study was excluded as we were unable to receive clarification from the authors as figure preferred reporting items for systematic reviews and meta- analyses flow chart summary of systematic review search process. o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access to whether participants left the racf for the interven- tion. eleven articles reporting on nine different studies fit the inclusion criteria. – the prismsa flow chart is presented in figure . a meta- analysis was not performed due to the diversity of the included interventions and the reported outcome measures. study characteristics of the included articles, – reported on different studies. therefore, a total of nine studies were included. the studies reported on data from a total of partic- ipants living in racf from high- income countries, australia, – the usa and sweden (table ). study sample sizes ranged from to . two studies were randomised controlled trials, one study was a controlled trial and the remaining six studies used quasi- experimental designs. – the participants ranged in age from . years to . years. interventions three of the articles included people living with dementia participating in a swimming- based programme at a local pool. two of these articles were from the same pilot study. two articles were from one study of a recreational programme which included wheelchair cycling. two studies were of arts- based discussion at an art gallery. the remaining studies were horse riding (equine- assisted activities), mentorship visits as part of an intergenerational programme, gardening at a park adjacent to the racf and supervised walks in the community. the duration of the interventions lasted from two weeks to five months. outcome measures four articles assessed behavioural and psychological symp- toms, including agitation. four articles assessed depressive symptoms. four articles assessed phys- ical function and one study evaluated quantitative characteristics surrounding walks outside of the racf, including the number of walks taken and reasons for walks not proceeding. two studies each assessed cognitive function and anxiety. one study assessed cognitive function at baseline to determine if it affected participa- tion in gardening activities. one article assessed self- reported quality of life, and one used an observer- rated quality of life instrument. one article each assessed changes in the number of sleep disturbances, physio- logical outcomes (salivary cortisol and interleukin- ) and activities of daily living. during the intervention, four articles assessed changes in activity participation and engagement, and one article rated well- being . quality assessment the selection criteria allowed the inclusion of randomised studies, non- randomised studies and quasi- experimental studies. therefore, the included studies were mostly preliminary by study design and did not represent conclu- sive evidence of the efficacy of the interventions. two randomised controlled trials were evaluated using the cochrane risk of bias tool (table ). two publica- tions (one study) about wheelchair cycling were rated as most unclear, and high risk of bias for allocation conceal- ment. the wheelchair cycling studies and the study by george nd singer were rated with high risk of bias for blinding of personnel and participants. however, the study by george and singer was rated low or unclear for the other criteria. the remaining studies were assessed using the newcastle- ottawa quality assessment for non- randomised studies. only the study by henwood et al was scored out of due to the presence of a control group ( / ). the six other studies were of good quality ( / – / ) (table ). – all six of these studies received a score of for ‘outcome assessment’ as they were not independent blind assessments. two studies did not recruit representative samples. the study by fields et al recruited participants with horse riding experience, and the study by thelander et al selected participants with a documented history of agitated or restless behaviour. the first swimming study lost greater than % of partic- ipants due to attrition and was rated in the ‘adequate cohort follow- up category’. narrative synthesis of intervention effects three articles from two studies by the same research team investigated the effects of twice weekly participa- tion in the watermemories swimming club. the programme aimed to create positive memories in people who previously enjoyed swimming. the pilot study results were reported in two publications by neville et al and henwood et al with people with dementia recruited from racf. the - week intervention incorporated supervised aquatic exercise at a local municipal pool and was designed to promote physical and functional ability. the study by neville et al reported outcome measures of psychological well- being. the psychological well- being in cognitively impaired persons scale (pwbcip) and the revised memory and behaviour problems check- list (rmbpc) were used to assess positive and negative affective states and engagement, and behavioural and psychological symptoms of dementia (bpsd), respec- tively. data were collected at baseline, week , week and post- intervention. across timepoints, improvements were observed in the pwb- cip (n= ; p= . ), rmbpc (bpsd frequency) and rmbpc (staff reaction to bpsd) (both: n= ; p= . ). the study by henwood et al focused on physical and functional benefits of the watermemories swimming club. the outcome measures were hand grip muscle strength and body composition, with balance and functional capacity measured by two composite measures, the balance outcome measure for elder reha- bilitation and the short physical performance battery. of the participants who provided data, an improve- ment in left- hand grip strength was observed (p= . ). both positive and negative non- significant trends were observed for other outcomes. however, transportation of people with dementia from the racf to a swimming pool was considered feasible and set the foundation for the o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access ta b le s u m m a ry o f th e in c lu d e d s tu d ie s r e fe re n c e in te rv e n ti o n m e th o d s p a rt ic ip a n ts o u tc o m e m e a s u re s r e s u lt s b u e tt n e r a n d f it zs im m o n s, u s a w h e e lc h a ir c yc lin g in tw o p h a se s: ( ) sm a ll g ro u p d is c u ss io n s a n d - m in u te r id e t im e s p e r w e e k fo r w e e ks a n d ( ) tw ic e p e r w e e k m a in te n a n c e p ro g ra m m e to a tt e n d a c ti vi ti e s fo r w e e ks . r c t w it h d a ta c o lle c ti o n a t b a se lin e , p o st - i n te rv e n ti o n p h a se , a n d p o st - in te rv e n ti o n p h a se . w it h d e m e n ti a a n d d e p re ss io n , m m s e ≤ , g d s - s f ≥ , liv in g in s ki lle d n u rs in g a n d a ss is te d liv in g . a g e = n o t re p o rt e d . g d s - s f, c m a i, s le e p d is tu rb a n c e s a n d a c ti vi ty p a rt ic ip a ti o n . in te rv e n ti o n g ro u p h a d lo w e r d e p re ss iv e sy m p to m s a ft e r p h a se a n d b e tw e e n b a se lin e a n d p h a se ( p < . f o r b o th ). n o e ff e c t o n c m a i. s le e p d is tu rb a n c e s w e re im p ro ve d in in te rv e n ti o n g ro u p b e tw e e n b a se lin e a n d p h a se ( p < . ). a c ti vi ty p a rt ic ip a ti o n im p ro ve d in t re a tm e n t g ro u p b e tw e e n b a se lin e a n d p h a se a n d ( p < . f o r b o th p h a se s) , a n d d e c re a se d in c o n tr o ls b e tw e e n p h a se a n d p h a se ( p = . ). b u e tt n e r e t al , u s a tw o w e e ks ( w e e kd a ys o n ly ) o f in d iv id u a lis e d re c re a ti o n a l t h e ra p y b a se d o n f u n c ti o n a l a b ili ti e s (w h e e lc h a ir c yc lin g , p a in ti n g , m u si c , c o o ki n g , p e t th e ra p y, w a lk in g a n d p la yi n g c a rd s) . s u b a n a ly si s o f r c t w it h d a ta c o lle c ti o n a t p re - in te rv e n ti o n a n d p o st - in te rv e n ti o n . w h e e lc h a ir c yc lin g w a s c o m p a re d w it h a ll o th e r in te rv e n ti o n s. w it h d e m e n ti a a n d d e p re ss io n , m m s e ≤ , g d s - s f ≥ , liv in g in s ki lle d n u rs in g a n d a ss is te d liv in g . a g e = . y e a rs . e n g a g e m e n t le ve ls , m in u te s o n t a sk a n d e n c o u ra g e m e n t r e q u ir e d . e n g a g e m e n t w a s h ig h e r d u ri n g w h e e lc h a ir c yc lin g c o m p a re d w it h a ll o th e r in te rv e n ti o n s (p < . ). w h e e lc h a ir c yc lin g p a rt ic ip a n ts h a d a m o re p o si ti ve m o o d , le ss a g it a ti o n a n d re q u ir e d le ss e n c o u ra g e m e n t. d ’c u n h a e t al , a u st ra lia w e e kl y vi si ts f o r w e e ks to a lo c a l a rt g a lle ry f o r a rt - b a se d d is c u ss io n in g r o u p s o f – . tr a in e d e d u c a to rs d e liv e re d t h e in te rv e n ti o n . q u a si - e xp e ri m e n ta l: d a ta c o lle c ti o n a t p re , p o st a n d fo llo w - u p . w it h m ild t o se ve re d e m e n ti a fr o m fi ve r a c f (o n e p e rs o n f ro m c o m m u n it y) . p ro vi d e d b io lo g ic a l sa m p le s. a g e = . ± . ye a rs . p re a n d p o st : sa liv a ry c o rt is o l, in te rl e u ki n - , m - a c e , d e m q o l , d e m q o l - c a re r, g d s - s f , h a n d g ri p s tr e n g th a n d g w q . im p ro ve m e n t in w a ki n g t o e ve n in g s a liv a ry c o rt is o l r a ti o ( p = . ), d e m q o l ( p < . ), g d s - s f ( p = . ), im m e d ia te r e c a ll (p = . ) a n d v e rb a l fl u e n c y (p = . ). g w q im p ro ve d fr o m v is it o n e t o v is it s ix ( p = . ). f ie ld s e t al , u s a w e e kl y vi si ts f o r w e e ks to a n e q u in e - a ss is te d a c ti vi ti e s p r o g ra m m e a t a n o n - p ro fit t h e ra p e u ti c ri d in g c e n tr e . q u a si - e xp e ri m e n ta l: in te rv e n ti o n c o m p a re d w it h a ll o th e r r a c f a c ti vi ti e s. w it h m o d e ra te d e m e n ti a f ro m r a c f w it h p re vi o u s e xp e ri e n c e w it h h o rs e s. a g e = . y e a rs . r e a l- ti m e o b se rv a ti o n s u si n g m o d ifi e d ve rs io n o f a c ti vi ty in c o n te xt a n d t im e q o l in d ic a to r in st ru m e n t. m o re p o si ti ve r e sp o n se s in c o n se rv a ti o n (p < . ) a n d a p p a re n t a ff e c t (p = . ) in in te rv e n ti o n c o m p a re d w it h o th e r a c ti vi ti e s. c o n ti n u e d o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access r e fe re n c e in te rv e n ti o n m e th o d s p a rt ic ip a n ts o u tc o m e m e a s u re s r e s u lt s h e n w o o d e t al , a u st ra lia tw ic e w e e kl y e xe rc is e se ss io n s fo r w e e ks a t w a te rm e m o ri e s s w im m in g c lu b w it h a t ra in e d s w im m in g in st ru c to r a n d in - p o o l su p p o rt f ro m s ta ff o r c a re rs . q u a si - e xp e ri m e n ta l: d a ta c o lle c ti o n a t p re a n d p o st . p e o p le w it h d e m e n ti a f ro m r a c f. a g e = . y e a rs . b m i, b o d y c o m p o si ti o n , s p p b , b o o m e r a n d h a n d g ri p s tr e n g th . l e ft - h a n d g ri p s tr e n g th im p ro ve d ( p = . ). h e n w o o d e t al , a u st ra lia tw ic e w e e kl y e xe rc is e se ss io n s fo r w e e ks a t w a te rm e m o ri e s s w im m in g c lu b w it h a t ra in e d s w im m in g in st ru c to r a n d in - p o o l su p p o rt f r o m s ta ff o r n u rs in g s tu d e n ts . c o n tr o lle d t ri a l. p e o p le w it h d e m e n ti a f ro m r a c f. a g e = . ± . y e a rs . b m i, b o d y c o m p o si ti o n , s p p b , b o o m e r , sa rc o p e n ic st a tu s, h a n d g ri p st re n g th , k a t z , r m b p c , p w b - c ip , c s d d a n d g a i. s ke le ta l m u sc le in d e x (p = . ) a n d le a n m a ss (p = . ) d e c re a se d in b o th g ro u p s, a n d h a n d g ri p s tr e n g th d e c re a se d in t h e c o n tr o l g ro u p (p ≤ . ). i m p ro ve m e n ts in in te rv e n ti o n g ro u p a p p ro a c h e d s ig n ifi c a n c e f o r r m b p c ( p = . ). g e o rg e a n d s in g e r, u s a a lt e rn a ti n g w e e kl y m e n to rs h ip v is it s w it h a ki n d e rg a rt e n a n d g ra d e c la ss ro o m f o r m o n th s. r c t. p e o p le w it h d e m e n ti a f ro m r a c f ( in in te rv e n ti o n a n d in c o n tr o l). a g e = . y e a rs (in te rv e n ti o n ) a n d . y e a rs ( c o n tr o l). m m s e , b a i, b d i a n d s in g le q u e st io n s (s e n se o f p u rp o se a n d se n se o f u se fu ln e ss ). b a i d e c re a se d in in te rv e n ti o n g ro u p a n d in c re a se d in c o n tr o l g ro u p ( p = . ). m a c a n d re w e t al , a u st ra lia e a c h w e e kd a y fo r w e e ks r e si d e n ts w e re ta ke n o n a - m in u te su p e rv is e d w a lk in to t h e c o m m u n it y o u ts id e t h e r a c f . q u a si - e xp e ri m e n ta l: d a ta c o lle c te d s u rr o u n d in g e a c h w a lk . p e o p le w it h s e ve re d e m e n ti a f ro m r a c f. a g e = . y e a rs . f e a si b ili ty d a ta w e re c o lle c te d a s th e p e rc e n ta g e o f c o n g ru e n c e b e tw e e n w a lk s a c c o rd in g t o a p re - d e fin e d c h e c kl is t. o f p la n n e d w a lk s, % ( n = ) w e re c o m p le te d . % o f th e w a lk s la st e d m in . f a ti g u e , p a in a n d d e si r e t o r e tu rn w e re th e m o st c o m m o n r e a so n s fo r w a lk s n o t p ro c e e d in g . m a c p h e rs o n e t al , a u st ra lia w e e kl y vi si ts f o r w e e ks to a lo c a l a rt g a lle ry f o r a rt - b a se d d is c u ss io n in g ro u p s o f – . tr a in e d e d u c a to rs d e liv e re d t h e in te rv e n ti o n . q u a si - e xp e ri m e n ta l: d a ta c o lle c ti o n a t w e e ks a n d . p e o p le w it h m o d e ra te t o s e ve re d e m e n ti a f ro m r a c f. a g e = . y e a rs . o b se rv e r- ra te d v id e o b e h a vi o u ra l a n a ly si s a t w e e ks a n d . o b se rv a ti o n s c o d e d a s ‘v e ry e n g a g e d ’ in c re a se d b e tw e e n t im e p o in ts ( p = . ). ta b le c o n ti n u e d c o n ti n u e d o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access r e fe re n c e in te rv e n ti o n m e th o d s p a rt ic ip a n ts o u tc o m e m e a s u re s r e s u lt s n e vi lle e t al , a u st ra lia tw ic e w e e kl y e xe rc is e se ss io n s fo r w e e ks (w it h - w e e k b r e a k) a t w a te rm e m o ri e s s w im m in g c lu b w it h a t ra in e d s w im m in g in st ru c to r a n d in - p o o l su p p o rt f ro m s ta ff a n d fr ie n d s o r fa m ily . q u a si - e xp e ri m e n ta l: d a ta c o lle c ti o n a t b a se lin e , w e e ks – a n d p o st . p e o p le w it h d e m e n ti a f ro m r a c f. a g e = . y e a rs . r m b p c a n d p w b - c ip . p sy c h o lo g ic a l w e ll- b e in g w a s d iff e re n t a c ro ss ti m e p o in ts ( p = . ), in c re a si n g b e tw e e n b a se lin e a n d w e e k , a n d d e c lin in g a t p o st - in te rv e n ti o n . f e w e r b p s d b e tw e e n b a se lin e a n d w e e ks a n d in b o th f r e q u e n c y a n d d is tr e ss t o s ta ff (p = . f o r b o th ). t h e la n d e r e t al , s w e d e n g a rd e n in g a c ti vi ti e s in a n a d ja c e n t p a rk t o t h e r a c f f o r si x w e e ks , ti m e s p e r w e e k. q u a si - e xp e ri m e n ta l: o b se rv a ti o n s a ft e r e a c h se ss io n . p e o p le w it h d e m e n ti a f ro m r a c f. a g e = . y e a rs . o b se rv a ti o n s u si n g a s ix - d e g re e in d e p e n d e n c e s c a le a ss e ss in g le ve l o f in d e p e n d e n t a c ti vi ty . m m s e p e rf o rm e d a t b a se lin e . in d e p e n d e n c e s c a le r e su lt s ra n g e d f ro m t o . m m s e r e su lt s h a d n o in flu e n c e o n in d e p e n d e n c e ( p = . ). b a i, b e c k a n xi e ty i n ve n to ry ; b d i, b e c k d e p re ss io n i n ve n to ry ; b m i, b o d y m a ss in d e x; b o o m e r , b a la n c e o u tc o m e m e a su re f o r e ld e r r e h a b ili ta ti o n ; b p s d , b e h a vi o u ra l a n d p sy c h o lo g ic a l sy m p to m s o f d e m e n ti a ; c m a i, c o h e n - m a n sfi e ld a g it a ti o n i n ve n to ry ; c s d d , c o rn e ll s c a le f o r d e p re ss io n in d e m e n ti a ; d e m q o l , h e a lt h - r e la te d q u a lit y o f lif e ( d e m e n ti a ); g a i, g e ri a tr ic a n xi e ty i n ve n to ry ; g d s - s f, g e ri a tr ic d e p re ss io n s c a le s h o rt f o rm ; g w q , g e n e ra l w e ll- b e in g q u e st io n n a ir e ; k a t z , k a tz i n d e x o f in d e p e n d e n c e in a c ti vi ti e s o f d a ily l iv in g ; m - a c e , m in i- a d d e n b ro o ke s c o g n it iv e e xa m in a ti o n ; m m s e , m in i- m e n ta l s ta te e xa m in a ti o n ; p w b - c ip , p sy c h o lo g ic a l w e ll- b e in g in c o g n it iv e ly i m p a ir e d p e rs o n s; q o l , q u a lit y o f l ife ; r a c f, r e si d e n ti a l a g e d c a re f a c ili ti e s; r c t, r a n d o m is e d c o n tr o lle d t ri a l; r m b p c , r e vi se d m e m o ry a n d b e h a vi o u r p ro b le m s c h e c kl is t; s p p b , s h o rt p h ys ic a l p e rf o rm a n c e b a tt e ry . ta b le c o n ti n u e d o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access controlled trial by henwood et al. this study was also a - week intervention, but included a control group. the outcome measures were the same as the pilot study, but also included the cornell scale for depression in dementia, geriatric anxiety inventory, katz activities of daily living scale and sarcopenia status using the euro- pean working group in older people criteria. of the two racf involved in this study, one had considerably better compliance ( . % vs . %). the analytic sample consisted of nine participants in both the intervention and control groups. both groups had a decrease in skel- etal mass index and lean mass post- intervention (p= . and p= . , respectively). a significant group by time interaction was observed for left- hand and right- hand grip strengths (p= . and p= . , respectively), driven by large decreases in the control group (p≤ . ). sarco- penia prevalence was increased post- intervention in both groups compared with baseline, increasing from four to six participants in the intervention group (p= . ) and from one to all nine participants in the control group (p= . ). greater improvements were observed in the intervention group in the behavioural and psychological outcomes and activities of daily living, but these were non- significant (all, p> . ). overall, the results of these studies reveal that away from the racf, swimming is feasible, although both studies had participant attrition. wheelchair cycling was the intervention in two articles from one study of recreational therapy activities. in this activity, people with dementia and depressive symp- toms sat in a wheelchair attached to a half bicycle and receive a - minute ride, where conversation with the cyclist was encouraged. an intensive - week programme with daily rides on the weekdays was first implemented with and participants from racf (total, n= ). this was followed by a - week maintenance period, where each participant went for a ride twice per week. the primary outcome in the first study was change in depressive symptoms assessed using the geriatric depres- sion scale short form. the intervention group had reduced depressive symptoms between baseline and after the intensive - week programme (p< . ) and between baseline and after the - week maintenance programme (p< . ). depressive symptoms in the control group increased between baseline and by the end of the inten- sive - week programme (p= . ). sleep disturbances were also recorded in one of the racf participating in the study (n= ). at baseline, sleep disturbances were reported in five participants in the intervention group and four in the control group. after the intensive - week programme, sleep disturbances were reported in two people in the treatment group and nine in the control group (p< . ). activity participation increased in the intervention group between baseline and following the intensive - week programme (p< . ), and in the main- tenance programme (p< . ). between baseline and the end of the maintenance programme, the control group was participating in fewer activities (p= . ). the second study compared the amounts of encour- agement and engagement, agitation and mood levels in a subsample of participants who received the wheel- chair biking during the intensive - week programme with the other recreational activities that were carried out over the weeks. these activities included playing cards, painting, music, pet therapy and walking. partic- ipants spent longer participating in wheelchair cycling (p< . ). less encouragement, higher mood, lower agitation and greater engagement were all observed for wheelchair cycling compared with the other activities. only the effect for engagement was statistically significant (p< . ). the results of these two studies demonstrated benefits from being outside participating in wheelchair cycling in people with dementia and depression in racf. two studies of the national gallery of australia art and dementia programme met the inclusion criteria. in both studies, each with an intervention period of weeks, participants who were living in racf were transported to the art gallery by bus and were accompanied by care staff. most participants were recruited because care staff believed they would benefit from the programme. the art and dementia programme at the national gallery of australia is similar to the programme pioneered by the museum of modern art in new york city. typically, participants discuss and engage with artworks from the galleries collection during a - hour pre- planned tour. the study by macpherson et al recruited people living with dementia, from a single racf. prior to the study, partic- ipants were reported to manifest significant challenging behaviours in their daily life. observer- rated video anal- ysis of the weeks and visits to the art gallery revealed an increase in observations coded as ‘very engaged’ (p= . ). two–three weeks after the final visit, one partic- ipant was able to clearly remember the programme, while others remembered aspects when prompted, and two did not remember. the study by d’cunha et al at the same table quality assessment of included randomised studies random sequence generation allocation concealment blinding of participants and personnel blinding of outcome assessment incomplete outcome data selective reporting other bias buettner et al and buettner et al unclear high high unclear unclear unclear unclear george et al low unclear high unclear low low unclear o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access art gallery recruited participants and completed pre- intervention and post- intervention, and follow- up outcome measures (quality of life, depressive symptoms and cognitive performance). of the participants, were living full time in racf. improvements were observed in each of the outcomes (all, p< . ), except for proxy- rated quality of life (p= . ). unique to the literature on art gallery programmes for people living with dementia, this study also evaluated changes in sali- vary cortisol and interleukin- (n= ), and hand grip strength. the waking to evening salivary cortisol ratio improves between pre- intervention and post- intervention (p= . ), indicating a more dynamic diurnal cortisol rhythm in response to the intervention. in both studies, engagement was high for all participants throughout both - week periods. together, these studies highlight that it is feasible to transport people living with dementia to local galleries and museums, and that specifically tailored programming has a range of benefits. however, notably, both studies were lacking control groups and participants were selected based on their likelihood to enjoy and derive benefits from the programme. the longest included study was a randomised controlled trial of a - month intergenerational mentor- ship programme, which included people living with dementia and students at an intergenerational school. the school was one of the first educational programmes to enable people living with dementia to provide mentor- ship to younger people in a structured voluntary role. over the months, the participants alternated between - hour visits to a kindergarten and a sixth grade class- room for a total of hours. in each class, a participant worked with two to three students and engaged in inter- generational life- history reminiscence sessions. the control group engaged in a peer education seminar titled ‘successful aging: reclaiming elderhood’ and received take home assignments so the time commitment was equal to the intervention group. the results indicated decreased anxiety and stress in the intervention group and an increase in the control group (p= . ). despite the small sample size, this finding supports intergenera- tional volunteering as a meaningful activity to promote quality of life for people living with dementia, which may also help to reduce stigma of dementia through engage- ment with children. the study by field et al investigated associations between nine different activities, one being horse riding (equine- assisted activities) at a therapeutic riding centre. eight people with mild- moderate stage dementia and previous experience with horses were recruited from a single racf; however, only six participants met criteria to be included in the analysis. the effects of horse riding were compared with a range of activities at the racf, including watching television, games, music, during meals and phys- ical therapy. a modified version of the activity in context and time observational instrument was used to evaluate environment correlates of quality of life, and specific indicators related to agitation and apparent affect, with t a b le q u a lit y a ss e ss m e n t o f in c lu d e d n o n - r a n d o m is e d s tu d ie s s tu d y s e le c ti o n c o m p a ra b ili ty o u tc o m e r e p re s e n ta ti ve n e s s o f c o h o rt s e le c ti o n o f n o n - e x p o s e d c o h o rt e x p o s u re a s c e rt a in m e n t d e m o n s tr a te th a t o u tc o m e n o t p re s e n t a t s tu d y s ta rt c o m p a ra b ili ty o f c o h o rt s o u tc o m e a s s e s s m e n t a d e q u a te fo llo w - u p f o r o u tc o m e s to o c c u r a d e q u a te c o h o rt fo llo w - u p (< % a tt ri ti o n ) o ve ra ll s c o re d ’c u n h a e t al n /a n /a / f ie ld s e t al n /a n /a / h e n w o o d e t al a n d n e vi lle e t al n /a n /a / h e n w o o d e t al / m a c a n d re w e t al n /a n /a / m a c p h e rs o n e t al n /a n /a / t h e la n d e r e t al n /a n /a / o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access the latter derived from the apparent affect rating scale. trained researchers used a hand- held computer to record observations using an instantaneous sampling strategy at - minute intervals for hours twice per week for eight weeks. the participants travelled by bus to the riding facility each week for weeks for the therapeutic horse riding intervention and were given the choice of riding, grooming, petting or observing the horses while being guided by volunteers. levels of conversation (p< . ) and apparent affect (p= . ) were improved in horse riding compared with the other activities. the ability of the participants to converse, maintain their gaze, show pleasure and participate in complex activities were more frequently observed in the horse riding activity. based on this small study, horse riding is considered a safe and enjoyable activity to promote quality of life of people with dementia living in racf. a safe walking programme was investigated by macan- drew et al in seven people with severe dementia who were prone to high- intensity wandering from two racf. the - week intervention involved supervised walks outside the racf each weekday. the timing of the intervention was calculated to be min before when the participants were most likely to wander (between : and : ) as deter- mined using actigraph activity monitoring. the walks were facilitated by one trained ‘interventionist’ around the predetermined routes in the immediate neighbour- hood of the racfs. each ‘interventionist’ followed a set protocol fidelity checklist, which was completed at the end of each walk and served as the quantitative outcome measure. the checklist included the pre- walk prepara- tion activities, the time and duration of the walk ( min), whether the prescribed route was followed and any devi- ations to the protocol. in total, of the ( %) planned walks were completed according to the protocol fidelity checklist for an average of . walks per partici- pant out of . ninety- one per cent of the walks lasted for the full min. the safe walking programme was found to be practically feasible and perceived to have benefits for people with dementia who wander. after the study, staff reported that some participants seemed to walk with more purpose and were more likely to be attracted to areas, where group activities were occurring. outdoor gardening was the intervention in the study by thelander et al. eight residents of racf were recruited for – - minute gardening sessions, three times per week over a - week period, in groups of two or three participants. five of the participants used a walking frame. the gardening took place in a park adjacent to the racf, and activities focused on park maintenance, including tidying gravel paths, weeding, composting and planting flowers, although there was flexibility to perform other tasks within the participants physical capabilities. participants were observed and rated using a ‘six- degree independence scale’ designed specifically for this study, which evaluated the levels of assistance required to perform the activities from independent to not participating in activities. generally, there were no fluctuations between residents’ independence across the intervention, and each resident participated between times and times and rated between (carried out activity with supervision) and (extensive need for help). baseline score on the mmse had no significant effect on level of independence (p= . ), although more help was required in participants with more severe dementia. the study demonstrated that people with dementia living in a racf can be safely enabled to participate in gardening activities, which have the potential to improve physical and functional capacity in small supervised groups. discussion there is a need for engaging activities that are enjoy- able and enable social connection for people living with dementia in racf. to the best of our knowledge, this is the first systematic review to collate the results of all studies which facilitated participation in activities within the community for people with dementia living in racfs to leave their facility as part of an intervention. studies of wheelchair cycling, swimming, art gallery visits, intergen- erational mentorship, horse riding, walking and outdoor gardening were identified. however, due to a paucity of studies, we could not determine which interventions are the most effective in promoting well- being. each study focused on different outcomes; however, it was demon- strated that activities outside the care setting were feasible and had the potential to offer psychological and physical benefits to people living with dementia. thehe systematic review revealedonly two randomised controlled trials and no blinded studies. this may be due to several factors, including practical difficulties in performing large blinded studies in racf settings, the cost to undertake this research and the need for racf staff to be present in order to ensure the safety of the participants. the findings of the present study identify a need for further research into how these activities can be sustainably and adequately implemented for people with dementia in the racf setting. psychological outcomes most of the studies in this review included a psycho- logical outcome, and demonstrated the potential for improvements in well- being, – quality of life, mood, cognition, and reducing depression – and behavioural symptoms. people with dementia in racf are relatively high users of psychotropic agents ; however, psychosocial approaches may lead to a decrease in use and benefit mental health and well- being. visiting an art gallery was shown to be beneficial in two studies, and a range of cultural and arts- based activ- ities has been considered to have greater benefits than pharmacological treatments as they promote social func- tioning and can facilitate meaningful personal expe- riences. similarly, exercise, as shown in this review through walking, swimming, gardening and horse riding, has positive effects on cognitive performance, and can o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access reduce depression and anxiety. being outdoors as a passenger in wheelchair cycling also has psycholog- ical benefits by providing access to fresh air, promoting conversation, memory formation and relaxation. all included studies facilitated social connectedness as the activities were performed in small groups or with others. this was seen in the study of gardening where participants worked together to perform a civic duty. gardening and horticultural therapy have been shown to have positive psychological, social and physical benefits, and benefits are compounded when undertaken in groups. inter- estingly, in the study by macandrew et al, staff found that the walking programme enriched the lives of the participants, who were selected due to their wandering, and even created positive change in the walking and wandering habits of some participants. while dementia is a cluster of incurable conditions, social participation and engaging in activities away from the racf has the potential to prolong quality of life and potentially reduce behavioural symptoms in the care setting. physical outcomes swimming, gardening, horse riding and walking were physical activities used in the included studies. in partic- ular, physical benefits, in the form of grip strength and a reduction in sleep disturbances were observed as a result of the swimming and wheelchair cycling. grip strength is a widely used marker of whole body muscular strength, which is associated with vitality, physical func- tion and cognitive performance. swimming improved grip strength, but no benefits were observed for grip strength following weeks of arts- based discussion groups, suggesting that physical activity is required to see improvements. swimming for older people has many benefits, including an increase in metabolism which can help with sleep and appetite, in addition to being a non- weight bearing form of physical activity which enables a full range of motion and joint mobility. a reduction in sleep disturbances was observed in response to wheel- chair cycling. individualised social activities have been shown to improve sleep drive and the circadian rhythm in people with dementia, and reduce daytime sleepiness. it has also been demonstrated that multi- component interventions and light therapy can improve sleep quality. while sleep outcomes were not assessed in the outdoor gardening study by thelander et al, ther- apeutic gardens may also improve sleep–wake cycles of people with dementia. benefits can be observed from simply getting outdoors to receive increased exposure to natural sunlight. gardening at a local park and walking represent ideal opportunities for people with dementia to engage in physical activity in an outdoor environment. the use of gardens and green spaces in the community represents an enabling environment for people with dementia, where they can engage in meaningful activity and achieve a sense of contribution and connection with their community. in the broader literature, the highest quality evidence for physical interventions in dementia, such as strength training and aerobic exercise, included a social aspect, and it is possible that the physical inter- ventions identified in this review (swimming, walking, gardening and horse riding) may result in more bene- fits because they also involved this social aspect and took place within the community setting. physiological outcomes the assessment of the physiological markers in psycho- social interventions for people with dementia is a rela- tively new and emerging area of research. the study by d’cunha et al found an improvement in the diurnal cortisol rhythm after participating in arts- based discus- sion groups over weeks. cortisol is the bodies primary stress and awakening hormone, and impairments in the diurnal rhythm in dementia are associated with lower hippocampal volume, increased agitation, decreased resil- iency and greater cognitive impairment, and is associated with depression. decreases in skeletal muscle mass and lean body mass were observed after participation in the watermemories swimming club and in the control group. however, a greater decrease was observed in the control group. the maintenance of muscle mass in older people may have implications for falls prevention, and swimming can potentially improve balance, gait and functional status. the measurement of physiological responses, such as stress hormones levels, skin responses, and heart rate variability, have been associated with well- being and mental health in dementia and are likely to be improved following activities outside of the racf. the capacity to facilitate meaningful activities outside the care setting may require planning and resources beyond that needed for activities within the care settings. this includes the availability of adequate staff, suitable transportation, assessing the physical abilities and needs of the residents and the suitability of the activity itself. the findings from this review demonstrate that travel into the community is not required for benefits, with the wheelchair cycling, walking and gardening studies taking place within close proximity to the racf, making them practical and accessible for care staff and people with dementia. the studies that involved art gallery visits, horse riding and swimming required the participants to travel to participate in the activity which requires suitable transport and adequate storage space for mobility equipment and care staff or volunteers. none of the included studies detailed how the travel occurred, but all indicated that they incorporated volun- teers or researchers in addition to regular staff. safety of the residents is an important consideration in the feasi- bility of using spaces outside the racf, and the need for supervision can restrict potential feelings of autonomy. for example, in the gardening study, the participants required supervision and there was difficulty in caring for the participants at the same time even though group sizes were limited to two or three. the size of the racf, and the number of residents, are also factors in the potential for community- based activities to occur. despite these o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://b m jo p e n .b m j.co m / b m j o p e n : first p u b lish e d a s . /b m jo p e n - - o n o cto b e r . d o w n lo a d e d fro m http://bmjopen.bmj.com/ d'cunha nm, et al. bmj open ; :e . doi: . /bmjopen- - open access potential barriers, activities in the community should be encouraged and can be enjoyed by people with dementia. it is important to weigh up the benefits of activities outside the racf with the risks, and ensuring that people with dementia have the right to choose whether they want to take some risk to engage in meaningful activities. limitations the weakness of the included studies was primarily seen in their study design. only two studies were performed in a randomised controlled fashion and did not perform any blinding, and one study was a controlled trial without randomisation. the remainder of the studies were limited by their quasi- experimental design. – quasi- experimental, non- randomised studies aim to stim- ulate and inform more rigorous interventional research, and if well conducted, can provide evidence for causal inference. overall, limited conclusions can be made based on the included studies due to their sample sizes and preliminary nature. however, evidence supporting psychosocial interventions for people with dementia are inherently difficult to conduct, may have challenges asso- ciated with recruitment and informed consent and may place additional demands on staff or carers. accordingly, this form of evidence is often the best available and can help inform the implementation of low- risk activities and interventions in the care setting. moreover, if there is evidence that participation in an activity can provide even a modest benefit, then it should be encouraged. we are also limited by the lack of quality assessment tools that are tailored to use to evaluate the included studies, particu- larly for the quasi- experimental studies as there is not one recommended tool for appraisal. future directions while field trips and outings frequently occur at many racf, there is a need for more well- funded and adequately designed research to identify and overcome the barriers to implementation to enable greater partici- pation in the community for people with dementia. the logistics and cost of transporting groups of older people and people with dementia represents a possible barrier, and research and policy work are required to determine how to maximise opportunities for people with dementia to participate safely in the community. given that trans- portation represents a barrier to participation, future research should also investigate the potential to use a variety of public and community transport options, which may also include ride sharing and autonomous vehicles as a potentially safe method of transportation for people with dementia. there is also a need for systems to be in place to best use existing public spaces, such as art galleries and museums and even local parks. one of the most significant effects of engaging in activities outside of the racf is a reduction in falls; however, this outcome was not assessed in any of the included studies. as reduc- tion in the likelihood of falls can reduce morbidity and mortality, prospective studies are needed to determine if dementia- specific activities outside of the racf can reduce risk. outside activities are not suitable for all people with dementia in racf with physical limitations or more progressed cognitive decline. therefore, future research should investigate how meaningful activities can be experienced in novel ways, for example, through virtual reality technology, which can potentially provide people living in racf the sensation of being outside and provide opportunity for physical activity through exergaming. finally, future studies comparing activi- ties facilitated within and outside of racf are needed to understand whether there are additional benefits when activities are conducted outside of the care setting. conclusion the findings of this systematic review demonstrate that there is currently limited, preliminary evidence from inter- ventions which enable people with dementia to engage in activities outside of the racf setting. the results suggest that activities outside of the racf is associated with improvements in psychological and physical health. the interventions in this review included a variety of activities with varying degrees of accessibility. in order for greater participation in community, activities and programmes to be achieved for people with dementia, high- quality studies are needed to establish an evidence base and to understand barriers to implementation in the racf setting. twitter nathan martin d'cunha @nathanmdcunha contributors nmd conceived and designed the study, performed the searches and article screening, and carried out the data extraction and quality assessment, analysis and drafted the manuscript. si helped design the study, carried out the quality assessment and commented on the manuscript. jk and ajm provided critical analysis on the manuscript. nn helped conceive and design the study, performed the searches and article screening, and commented on the manuscript. funding nmd is supported by a dementia australia research foundation phd scholarship. competing interests none declared. patient and public involvement patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research. patient consent for publication not required. provenance and peer review not commissioned; externally peer reviewed. data availability statement all data relevant to the study are included in the article or uploaded as supplementary information. the data reported in this study are the results from publicly available peer- reviewed literature. funding bodies had no role in the inception, design, completion or publication of this work. open access this is an open access article distributed in accordance with the creative commons attribution non commercial (cc by- nc . ) license, which permits others to distribute, remix, adapt, build upon this work non- commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non- commercial. see: http:// creativecommons. org/ licenses/ by- nc/ . /. orcid ids nathan martin d'cunha http:// orcid. org/ - - - nenad naumovski http:// orcid. org/ - - - references beerens hc, sutcliffe c, renom- guiteras a, et al. quality of life and quality of 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selection and data extraction 	quality assessment 	results 	study selection 	study characteristics 	interventions 	outcome measures 	quality assessment 	narrative synthesis of intervention effects 	discussion 	psychological outcomes 	physical outcomes 	physiological outcomes 	limitations 	future directions 	conclusion 	references creative expression, dementia and the therapeutic environment by dalia gottlieb-tanaka dip. the academy of art and design, bezalel, m. arch., the university of british columbia, a thesis submitted in partial fulfiment of the reqiuremnets for the degree of doctor of philosophy in the faculty of graduate studies (interdisciplinary studies) [health/education/arts/architecture] the university of british columbia june © dalia gottlieb-tanaka, abstract this study aims to explore the physical environment in arriving at an understanding of the administration of and level ofsuccess of creative expression programs that were carried out with seniors who have mild cognitive impairment to moderate dementia at the l ‘chaim centre and at the margaret fulton centre, two adult day care centres. i am interested in the circumstances that enhance or limit the seniors’ ability to express themselves creatively. understanding the physical, cognitive and social abilities of this population helps establish the foundation for strategies that can manifest themselves in the shape and form of the physical environment. the physical envelope that surrounds the seniors, spiritually, emotionally and physically, embodies the reflection of the seniors’ world whether at home, in a residential setting or in institutional care. this envelope could serve as a therapeutic environment that fits with one of my long-term goals: to provide opportunities for creative expression activities with educational components that are supported with appropriate architectural planning and design. this study is based on qualitative research in which a/r/tography is employed as the overall philosophical approach and as a methodology for data collection. a/r/tography seeks knowledge through relational conditions, living inquiry and a commitment from the researcher as an artist and educator to a process of questioning. it also invites participants to be part ofthe study process and experience an ongoing process of inquiry. this method fits well with the making of architecture as practice and theory. the research shows that the physical environment has the potential to attract seniors with dementia to stay in the space and become engaged in creative expression activities. but the space alone is not enough to engage the seniors in these activities. success in implementing a creative expression program is linked strongly with an understanding of the seniors’ physical and cognitive abilities and with the commitment of the facilitator to implement aflexible approach to each individual. ii acknowledgments this research was achieved with the help and input of many people and organizations. true to its interdisciplinary approach to research, this compelling topic on creative expression, dementia and the therapeutic environment reached across many disciplines. i would like to acknowledge the many seniors with dementia i interacted with during the last seven years, especially at the l’chaim and margaret fulton adult day care centres in vancouver and north vancouver. the seniors were a source of delight, inspiration and deep emotional connection. many seniors from my early years of research did not live to see this dissertation or remember they were part of it. i would like to thank maureen murphy, the director of margaret fulton centre and debbie cossever, program director at the l’chaim centre for being such good hosts and wonderful willing partners in this study. i would like to mention sylvia sinclair, an artist and teacher. although she was not included in this study, sylvia was an incredible source of inspiration to me in my quest to unlock the psychosocial mysteries of dementia. in a long list of friends and supporters, i would like to acknowledge, sheila jones, a writer and editor, who accompanied me for the last years through all my endeavours. her solid support that never failed is one of the reasons for my achievements in this field and others. i have a special place in my heart for my supervisor, dr. rita irwin, from the university of british columbia who, as my steady unwavering guide, managed difficult situations to bring me through to this moment. dr. irwin, as my research supervisor, is joined by dr. marlene cox-bishop from the university of alberta, who worked with me from the beginning of my studies, dr. habib chaudhury from simon fraser university, whose gentle guidance was very much appreciated and dr. howard feldman, from ubc, who answered my desperate need to include the medical profession in this work. i would like to add to this group dr. jeff small from ubc, who encouraged me in the early stages of my doctoral program. a sincere thank you goes to dr. annalee yassi, the director of the institute of health promotion (inpr) at ubc and dr. jim frankish, the associate director, for allowing me to use their premises and enjoy their support along the way. among the staff at ihpr that helped in many ways were: julieta gerbrandt, jeanette hansen and brenda kwan. i would like to acknowledge dr. remi quirion, scientific director of cihr and dr. bruce miller, professor of neurology at the university of california at san francisco (ucsf), who are probably unaware of the impact they had on my newly developed career. in the last two years i was fortunate to be accompanied by david l brown, a videographer and a dear friend, who documented my work with seniors with dementia and was always there to help in good times and in bad times. other contributors were david jones, who helped to sort out the formatting, frank van de ven, who helped search for information no one could find. thanks from the bottom of my heart to julie marez for her support and great help in using her expertise at autocad and producing all the drawings for this work. i keep a special place for my family in this acknowledgment. mineo tanaka, my husband, knew when to step in and lend a helping hand - when i needed him the most. i valued his feedback and support through the whole experience of being a mature student with a family and many other obligations. my daughter, carmel, accompanied me with her wonderful musical talent in many of my sessions with the seniors. with insight, compassion and understanding of this population well beyond her years, she provided me with a sounding board in many of the difficult, wonderful and exciting situations we experienced together. i dedicate this work to her, mineo and my parents who would have been so proud to see me graduate. this research was supported by the alzheimer society of canada, the scottish rite foundation, the lions gate research foundation, the society for the arts in health care, and the american society on aging. their financial support enabled me to focus on my work and reach others in an effort to advance research in dementia care. iv table of contents abstract ii acknowledgments iii table of contents v list of figures viii list of attachments ix list of drawings ix chapter i: introduction i thesis organization foreshadowing i overview of the research problem research questions objectives chapter ii: literature review the therapeutic environment current arts-based programs definiton of dementia definition of everyday creativity arts-based programs in dementia care: the literature on special care units (scu) versus non-special care units (non-scu) music therapy strengths and weaknesses as music therapy links to creative expression abilities and dementia music therapy and the arts room in a therapeutic environment occupational therapy occupational therapy and the arts room art therapy dailey’s view on art therapy and the therapeutic environment mcniff’s view on art therapy and the therapeutic environment rubin’s view on art therapy and the therapeutic environment the performing arts reminiscence therapy, life review, life reflection and storytelling reminiscence, life review, life reflection, storytelling and the therapeutic environment review new directions for research and implications for practical implementation recommendations emerging approaches to creativity research other perspectives on creativity and expression the meaning of creativity, gaps in information creativity and aging why creativity and creative expression are important how seniors with dementia experience everyday creativity within the aging process .. physiological changes associated with aging and dementia cognitive changes associated with aging and dementia social cognition, aging and dementia v chapter iii: methods . qualitative research selecting qualitative inquiry air/tography summary of research methods ethics in research sites selected the margaret fulton adult day care centre the l’chaim adult day care centre participants selected data collection analyzing data tools for collecting data: interviews interviews with participants at margaret fulton centre interviews with participants at l’chaim centre significance of interviewing participants at their home tools for collecting data: nr/tography field notes significance of air/tography field notes and analysis tools for collecting data: filming tools for collecting data: the intervention — the creative expression activities program timeframe for the sessions selected sessions from the creative expression activities program observed everyday creativity engaging in creative expression activities tools for collecting data: space diagrams example of video transcript and analysis analysis of videotaped session chapter iv: understandings derived through inquiry themes that emerged from the literature review design principles for a therapeutic environment applying the five design principles at the l’chaim and margaret fulton centres general recommendations design principle : provide opportunities for different levels of participation in creative expression activities design principle : provide opportunities to celebrate one’s ethnicity physical changes to the environment and the users’ response to them summary of understandings based on the inquiry furniture arrangements at the margaret fulton and l’chaim centres chapter v: discussion reviewing the themes reviewing the design principles reviewing the understandings reached in dementia in creative expression activities in the therapeutic environment questions for future inquiry and closing comments the overall significance of the thesis vi epilogue . bibliography appendices a. samples of field notes and interviews at margaret fulton and l’chaim day care centres b. a/r/tography field notes at margaret fulton adult day care centre c. session planning d. samples of consent and assent forms e. sample of interview questions vii list of figures figure : overview of thesis figure : selected approaches to creativity research figure : the conceptual framework of the person-centered model versus medical model figure : locations of margaret fulton and l’chaim centres figure : exteriors of margaret fulton centre in north vancouver, bc figure : interior shots of margaret fulton centre in north vancouver, bc figure : l’chaim centre exterior shots figure : l’chaim centre interior shots figure : participants at the mfc and lc centres figure : margaret fultori centre art facilitator and a participant figure : l’chaim participants engaged in art activity figure : a senior with moderate dementia at the l’chaim centre designs her creative expression studio figure : participants at l’chaim and margaret fulton centres figure : participants at the l’chaim centre engaged in music activity figure : david l brown, the videographer, sets up the cameras at the l’chaim centre figure : turning the u table around with the opening towards the windows viii list of attachments a: gottlieb-tanaka, d. (producer/facilitator) & brown, d.l. (videographer). ( ). margaret fulton adult day care centre in north vancouver, bc. (dvd video of ). canada. unpublished raw data. b: gottlieb-tanaka, d. (producer/facilitator) & brown, d.l. (videographer). ( ). l’chaim adult day care centre in vancouver, bc. (dvd video of ). canada. unpublished raw data. c: gottlieb-tanaka, d. ( ). creativity, dementia and the therapeutic environment. (cd of ). unpublished doctoral dissertation. university of british columbia, vancouver. list of drawings drawinglc— session one — music, all tables are arranged into one large rectangular shape drawing lc— session two - repeated music activity, tables arranged in a u-shape with opening facing main entrance drawings lc — a and b session three — friendship a — detached dining tables b — back to a u-shape arrangement with opening facing main entrance drawing lc- session four — bending wires. strength versus weakness, triangle drawing lc— session five — designing creative expression studio drawing lc— a hand sketch of proposed floor plan at l’chaim centre drawing lc — proposed floor plan at the l’chaim centre drawing lc — c proposed floor covering design —implemented at the l’chaim centre drawing mf — i (small room in the back) session one — friendship, two tables are arranged into l shape drawing me — (art therapy room) session two — music, two tables side by side creating one table ( feet wide by feet long) drawing mf — (courtyard) session — music and drumming, two round garden tables drawing mf — (small room in the back) session four — massage and the walkout drawing mf— proposed changes to floor plan at margaret fulton centre, adding a new deck to the back room and expanding art area and interior wandering path ix chapter i: introduction thesis organization this dissertation is composed of five chapters. chapter one, the introduction, includes a section on foreshadowing, which explains how i came to work on this topic. it includes an overview of the research problems and the thesis objectives. chapter two is a literature review of the therapeutic environment as it relates to arts-based programs and persons with dementia. in this chapter i review current arts-based programs, such as music and art therapies, while looking for relevant information on dementia care that are relevant to my creative expression program. the review is designed to identify the strengths and weaknesses of each program type, in relation to creative expression abilities and the therapeutic environment. chapter three, methods, explains the rationale behind the selection of a/r/tography as a method for data collection for this inquiry. it includes a thoughtful consideration of the ethical issues of doing research with this vulnerable population. it provides background information on the selected sites and the participants. in this chapter i discuss techniques such as interviewing, filming, and conducting the program on creative expression activities in collecting data. to analyze the data collected i used color coding throughout the textual material to identify themes and patterns. at the end of the chapter i include a transcript of one of the videos that were taken as an example, where, again, i used color coding for analysis. chapter four, understandings arrived at, discusses the themes that emerged from the inquiry and applies the design principles to existing conditions at the two facilities as i change the furniture arrangements and document them in writing, drafting and photographing. at the end of this chapter i propose architectural resolutions for the two sites, some of which have already been implemented at the l’chaim centre. chapter five is a discussion that reflects my understanding of the themes and the application of understandings to dementia, creative expression activities and the therapeutic environment. issues raised are examined from an a/r/tography perspective as i apply my multiple roles as facilitator/architect/artist/educator and researcher. the chapter includes suggestions for further research. the epilogue returns to the personal note on which i began the dissertation, with my design for stained- glass connecting doors at the l’chaim centre as my gift in gratitude for the love and care the staff and participants showered on me. foreshadowing i was born into a family of holocaust survivors. i can count my family members on one hand. only one uncle out of many uncles and aunts who lost their lives in the war remain alive to day. it took years to realize that my family situation was not what would be considered a normal functioning family. nevertheless, both of my parents were very creative people and it showed in the way my mother taught her students, in her lesson preparation, class decoration, in the way she was dressed and how she made my dress-up costumes. my father was one of the last carpenters of his era who could still decorate his handmade furniture with traditional wood inlay. as a child i would spend hours in my father’s shop watching the dance of creation. i can still smell the glue, the varnishes, hear the screaming sound of the saw, the hurried instruction of my father to his intern, and the calls ofjoy or disappointment as the work progressed. i think my father appreciated my fascination with his work. years later, after i decided to continue my studies in architecture, he offered his small manufacturing space to me as he was thinking about retirement. we both knew deep in our hearts it was not a realistic move at that time of my life. just before he closed his shop forever, he helped me build a chair that i designed for a school project i would later take back to bezalel, a unique school of art and design that followed the bauhaus tradition. the school was established by designers who fled germany at the onset of the war in europe, and were later joined by survivors of the war. throughout my childhood i ached for grandparents, who did not survive and the sight of older people embracing their grandchildren would pierce my heart with jealousy. and so the holocaust, with its taxing issues of life and death and the lack of extended family, has been an invisible extension of self and an active partner in shaping my experiences as i went through life. from an early age i was encouraged artistically and my efforts always met with great enthusiasm and approval. looking back, trying to understand those rare moments of happiness with my mother as we painted or sewed together, i can see the early foundation for my skills in communicating with seniors with dementia. as i grew up, high school was my first encounter with formal education in the design world. the more the situation at home and the relationship with my mother grew complicated, the more i turned to the creative aspect of my studies. i loved those moments of searching for the best space solution, the most suitable colour and discovering the most appropriate materials and techniques to resolve design problems. it took years to realize that there were multiple approaches to design problems and that many of those solutions were equally valid. after high school i served for three years as a draft person in the naval headquarters in israel. once more, as the country struggled to sustain itself, issues of life and death re-emerged from my childhood. i experienced war after war until the day i moved to canada and even afterwards, i was caught up in wars during visits to israel. the memories of past persecutions and present violence intermingled in a mad, frenzied dance, threatening to destroy the passion to create. my mother told me that even in the most difficult times during the war, people still tried to write or paint (if they could find paper and pencil or walls). they felt a desperate need to leave something of themselves for the next generation. these paintings were intended to serve as documents recording present events. they were the shortest and most economical way to describe the horrors of the war. after my service in the navy i applied to an academy of art and design in the jewellery program, but that program was already full. instead i was accepted into the program on industrial and environmental design. there i found myself designing such products as furniture, cars, pleasure boat interiors, cutlery, tents, playgrounds and hospital equipment. in my fourth year i met my canadian husband, who came on a student exchange program from the university of british columbia (ubc). i followed him to vancouver. i left my country, my family, and a potentially brilliant career in architecture and substituted it with years of cultural struggle, language difficulties, being misread and misunderstood. i was uprooted into the unknown and the unfamiliar. having to learn everything from scratch, the confidence i worked so hard to build gave way to feelings of insecurity and self-doubt. and so, to escape the disappointments and harsh reality, i went back to school to immerse myself in the world of design. i deliberately selected a research topic from a local situation to help integrate my efforts as quickly as possible into this new environment and its people. although integration was a priority, my struggle to maintain my own identity continued. after graduating from ubc with a master’s degree in architecture, i joined my husband in running our architectural office and raising our two daughters, now age and . about years ago i was introduced to a wonderful old lady in a long-term care facility who suffered from dementia. i had no knowledge as to how dementia manifested itself behaviourally or biologically. it was like stepping into a different world; once more having to learn the medical jargon of health service providers, the terms of social work, of cognitive impairment and the issues of aging. now, in the midst of my latest endeavour, i am trying to understand, in depth, the world of people who suffer from dementia. long before the decision was made to go back to the academic world, i was intrigued by a new world i had entered four years earlier: the world of seniors with dementia in a long-term care facility. nothing in my years of living prepared me for this complicated experience. in my youth, i was not exposed to many old people and even less exposed to older people with dementia. i started as a volunteer in a care facility spending time with ruth, who was years old, frail and suffering from early dementia. her health was deteriorating fast. with my limited knowledge i tried to alleviate the situation and faced many unanswered questions. it did not take long to realize that something special was happening to me. i needed to understand what was going on. and that is precisely the focus of qualitative research: it is the quest to understand what is going on in the world of a specific individual or group of people, to make sense of it and perhaps turn that new understanding into action, depending on the goals set by the various parties involved in the research. in searching for answers to ruth’s deteriorating health, i learned that nothing could cure her; we could only make the best of the situation with whatever activities ruth could still manage. at that moment i went back to school to see what else i could do for ruth and people like her. ruth died a year later as have many others i worked with. i knew right from the start that understanding seniors with dementia and their abilities for creative expression would not be enough for me. i wanted my direct interaction with them to be meaningful and bring new knowledge that would benefit all of the stakeholders involved. i needed a way to record the new information so it would not be lost or forgotten. i was looking for ways to make sense of my observations, a system that would allow me to go back to it and access specific information, to explore individuals at different stages of the dementia, events, activities, architectural spaces and myself as a researcher/artist/facilitator! educator and watch if concepts, patterns or any new information would emerge from all the data collected. although contradicting each other at times, order and a fair tolerance for ambiguity are important to my style of work. before beginning my doctoral studies, the direction for my inquiry was based on common sense, my acquired knowledge and my own analytical way of problem solving. the desire to understand what was going on by being directly involved with those who use spaces within dementia care facilities has ultimately guided my inquiry. overview of the research problem the aging population in canada will peak between and when the baby boom generation reaches + years of age (health canada, march, ). significant pressure will be brought to bear on the healthcare system and on support services for older people. various levels of care facilities are expected to experience higher demand for their services. according to health canada, one of every four persons over the age of will have some form of cognitive impairment. these pressures may threaten the quality of services to seniors with dementia in the future. today, most services are geared to serve basic needs, while existing quality of life programs, such as those based on creative self-expression, have never really reached their potential. the consensus among researchers is that creativity enhances the quality of life at every stage in human development from cradle to grave (runco and richards, , harbet and ginsberg, and holden, ). runco and richards, who support the idea of everyday creativity, say that creativity manifests itself in being curious, in an ongoing process of self-evaluation and personal growth. if we accept the premise that creativity improves psychological health (robbins, ) and contributes to the empowerment process (cox & parson, ), the ultimate goal is to enable persons with dementia to maintain and enhance the quality of their lives and to use their remaining abilities to express themselves. this study aims to explore the physical environment in arriving at an understanding of the administration of and level of success of creative expression programs in two adult daycare centres. it is based on qualitative methods of data collection. i am interested in the circumstances that enhance or limit the seniors’ ability to express themselves creatively. understanding the physical, cognitive and social abilities of this population helps establish the foundation for strategies that can manifest themselves in the shape and form of the physical environment. the physical envelope that surrounds the seniors, spiritually, emotionally and physically, embodies the reflection of the seniors’ world whether at home, in a residential setting or in institutional care. this envelope has the potential to create a therapeutic environment that fits with one of my long-term goals: to provide opportunities for creative expression activities with educational components that are supported with appropriate architectural planning and design. research questions the following questions explore two main themes that focus on the environment and human behaviour. they cover the built environment, the facilitator/artist, the creative expression abilities of seniors with dementia and the intervention of creative expression activities. . how does the physical setting support, stimulate or hinder the learning environment for seniors with dementia to express their creative abilities? . as an alr/tographer, how does this study influence my perception of educational learning environments when working with seniors with dementia? objectives the goal of this inquiry is to investigate the physical environment, how it helps or hinders arts activities and how the space is being used by the participants. in addition, we investigated how the facilitator’s approach affects the creative expression abilities of seniors with dementia selected specifically for this project. that approach includes an investigation through the lens of alr/tography where the facilitator participates and documents the seniors’ activities from the point of view of artist, researcher and educator. the results of this inquiry may lead to the following desired outcomes: ( ) to encourage persons with dementia to have a sense of personal control as long as possible; ( ) to help health service providers, formal and informal caregivers, understand the importance of the arts in maintaining quality of life and as a tool for communication; ( ) to offer an additional assessment tool to help understand the manifestation of neuropsychological problems that arise from dementia in a variety of functional domains; ( ) to provide concrete information for management in making decisions about facility programs to show that creative activities benefit the seniors, the staff and the overall operation of care; ( ) to help management in making decisions about facility renovation or new construction to include appropriate spaces for creative expression activities; and ( ) to explore applications in other situations where cognitive and physical abilities may be impaired. understanding concepts and definitions through literature review of: • creativity • expression • creative expression • therapeutic environment forming the conceptual framework • creative expression activities to be explored in: understanding eminent creativity as it expands to include everyday creativity understanding everyday creativity as it expands to include creativity and aging , identifying the gap of knowledge . understanding key issues in everyday creativity, aging, and dementia as it expands to include the therapeutic environment , data collection and analysis using a/r/tography and participatory action research methods , implementing changes to the environment, reviewing feedback from participants figure : overview of thesis chapter ii: literature review this chapter considers the literature about the therapeutic environment as it relates to current art- based programs for seniors with dementia, such as music therapy, art therapy, the performing arts, reminiscence therapy,, life review, life reflection and storytelling. at the end of each program outline, i review the literature about the type of therapy as it relates to the therapeutic environment. in the next section of this review i explore the meaning of everyday creativity and how seniors with dementia experience it, with reference to the physiological changes and cognitive changes associated with aging and dementia. the therapeutic environment a literature review of references dealing with issues in the therapeutic environment in special care units revealed a complete lack of information regarding space design for creative expression activities in long term care facilities for seniors with dementia. as a result, there are no scientifically tested situations to learn from. however, there is a rich source of information on the institutional therapeutic environment. from this source we may be able to extract general design principles and apply them to space design for people with dementia while engaged in creative expression activities. see lawton & nahemow, , lawton, fulcomer & kieban , lawton, weisman, sloane, calkins, , lawton , zeisel , cohen & weisman , cohen & day , day, carreon & stump and amabile . by asking what role the physical environment plays in creative expression activities for seniors with dementia, i look to the desired outcomes i aim to achieve in. linking the environment with the behaviour of these seniors (lawton, ). i will not know the impact of the environment until i carry out tests engaging participants in various experimental conditions of the environment, observe their reactions, and interview a range of stakeholders including the seniors themselves (lawton, ). the physical environment provides a mirror image of the physical and cognitive needs of seniors with dementia. ideally, the physical environment is the final step in a long process of planning and designing a space, a place and/or an atmosphere. in this review, i have considered the physiological and cognitive changes associated with aging and dementia with references that link them to creative expression abilities of seniors with dementia and to environmental considerations. those references will assist later in the formulation of a theoretical approach to space design for these seniors as they engage in creative expression activities. four different studies describe the role of the environment and its impact on the behaviour of different groups of people: amabile ( ) on creativity and a normal population in the workplace, lawton and nahemow ( ) on older persons, zeisel ( ) on alzheimer’s patients and mcniff ( ) on the concept of a “studio” as a space that inspires artistic activity. in her article on motivation and personal histories ( ), amabile found that ranking first in her interviews was the need for “qualities of environments that promote creativity” (p. ). when assessing environments for older adults with reduced competence, lawton and nahemow ( ) argued that the lower the competence of an aging person, the greater the negative impact of the environment, and the more likely it was to result in maladaptive behaviour. they quoted murray ( ) who stated that the “forces in the environment that together with an individual need evoke a response” and named these forces “the environmental press” (p. ). zeisel’s ( ) article on life-quality alzheimer care in assisted living describes well the importance of the therapeutic environment for seniors with dementia. zeisel identifies eight design characteristics: exit control, walking paths, personal places, social places, healing gardens, residential features, independence and sensory comprehensibility. he lists eight organizational criteria: personhood, purpose, adaptability, staff suitability, life richness, family responsiveness, real woridness and responsibility. when the criteria and design characteristics interact, they form the basis for a positive and therapeutic environment. although there are references to the need for meaningful activities, no description or space criteria are provided. the literature review did not deal in-depth with the therapeutic environment because there were so few sources. however, cohen and weisman ( ) in their discussion of institutional environments, specifically in a special care unit, did outline five design principles for a therapeutic environment. they report that non-therapeutic environments “can result in frustration and disruptive behavior” (p. ). they may also affect policies and programs. cohen and weisman recommend: principle : clusters of small activity spaces principle : opportunities for meaningful wandering principle : positive outdoor spaces principle other living things principle spaces from public to private realms i will return to these principles and consider them at length in evaluating the work of this inquiry. in addition, i intend to consider these further elements that cohen and weisman ( , p. - ) recommended to minimize the negative impact of institutional settings on seniors with dementia, when they asked that the therapeutic environment allow for: • regulated stimulation and challenges • autonomy and control • ties to the healthy and familiar • functional ability through meaningful activity • safety and security • orientation to space and time • wandering treated as an opportunity • social contact • opportunities for privacy these elements are discussed in detail in chapter in connection with the drawings related to understandings based on physical changes to the environment. current arts-based programs the use of arts-based programs, as therapeutic interventions, is a relatively new concept and is still evolving. this concept was developed by shaun mcniff ( ) in his book art as medicine: creating therapy of the imagination. in it he introduced the concept of “multi-arts experimentations” (p. ). this approach to arts therapy is based on his work going back to the ‘ s. of all the publications reviewed for this paper on various arts-based programs, mcniffs philosophical approach to arts therapy offers the closest definition of this topic: art as medicine embraces life as its subject matter, and separations among the arts are countratherapeutic. as i work with individuals, jam open to their poetic speech, stories, body movements, dramatic enactments, sounds, and other expressions as well as to the pictures they paint. i try to establish contact with as many aspects ofthe person’s presence as possible. (p. ) ... art itselfbenefits from a community ofcreation that involves different art forms and incites imagination through diversity. (p. ) to identify and describe these current arts-based programs, i conducted a literature review. the selected programs were based on the parameters established in the revised definition of “everyday creativity” that was formulated in question one and on mcniffs approach to creative expression therapies. these programs include: music therapy, occupational therapy, art therapy, the performing arts; drama, dance/movement and storytelling therapies, reminiscence therapy and life review and poetry writing, and they are the ones in use with elderly persons with “dementia”. dementia is the term most often used to define this population of cognitive and physical impairments; it is my area of interest and therefore was used as a keyword in this search through the literature. this review focuses on current art- based programs with brief references to historical developments in order to clarify current points of view or a specific approach to the arts in health care. the review covered relevant literature published between and , including some articles published as early as , to identify the arts-based programs and the physical environment the programs operate in, mainly in long-term care facilities, adult day-care programs and recreational centres for seniors. although some aspects are extremely important — such as race and gender, medical models of care, social and economic status of residents and their families — they are not covered by this review. the initial intention in this literature review was to focus on qualitative studies. however, the majority of the studies found were based on quantitative research carried out in the field of health care, mainly by psychologists or scholars in the arts. therefore, both quantitative and qualitative approaches had to be considered for their relevance. relevant literature on the topic was analyzed for its applicability of theoretical, methodological and practical approaches with some attention to the size of the samples, to the criteria for subjects’ selection, the measurement technique used, how the data was collected and analyzed, whether the findings could be replicated in another location with other subjects (reliability) and whether the findings answered the research question posed (validity). learning what techniques other researchers used or didn’t use helped me form my approach and understanding about how to proceed with the inquiry. i did find out that no matter what methodology was used, almost all researchers mentioned the difficulties in doing behavioural science research in dementia, and the sensitivity and flexibility that needed to be exercised. in the selection of literature i was not concerned with what quantitative research would see as failing to answer all the requirements of scientifically rigorous research. i was more concern to learn about the approach and the reasons for selecting it. as in the arts, each situation is unique created by people who have their own stories to tell, which are influenced by their various abilities to express themselves creatively. and although the situation may not meet the standards of quantitative research may provide parts to the puzzle of how to use the arts in the service of health care for the benefit of the people, especially seniors with early to moderate dementia. definition of dementia dementia refers to the development ofmultiple cognitive or intellectual deficits that involve memory impairment ofnew or previously learned information and one or more of the following disturbances: . aphasia, or language disturbances. . apraxia, or impairment in carrying out skilled motor activities despite intact motor function. . agnosia, or deficits in recognizing familiar persons or objects despite intact sensory function. . executive dysfunction, or impairment in planning, initiating, organizing, and abstract reasoning. (agronin, , p. - , as published in “the diagnostic and statistical manual of mental disorders, fourth edition) dementia is divided into seven subtypes that include over brain diseases. although, new medicines have been introduced to alter the progression of the condition, a cure has not yet been found (agronin ). while the search goes on, people with dementia are in need of special care and constant supervision wherever they reside, whether at home or in long-term care facilities. / ( ) _________ sternbergetal gardner ( ) • psychometricneuropsychological creativity • experimental < ‘) \approach based on research biographical < i• biologicalinguistics • contextual e— / • artificial behavioural • product perspective • process • biology research ‘ press • clinical research • cognitive research eminent creatmty to • developmental everyday creativity research • economic factors ÷ _________ theories • psychometric research • social research figure : selected approaches to creativity research definition of everyday creativity i have proposed this definition of everyday creativity: creativity in the context of dementia adds something new and different to the world whether through intrinsic self-exploration as an individual, or sharing creative expression through interaction with others. the creative process is demonstrated through creative thinking and imagination in everyday living and may or may not result in a product. through creativity, people with dementia could (can) enjoy meaningful, satisfying and (at times) unpredictable experiences that may last for only a very short while or as long as memory allows it. this review focuses on arts-based activities programs and the physical environments they take place in. both aspects are addressed through theoretical and practical perspectives, which are tightly creativity versus no creativity csikszentmihayi ( ) • added — public recognition and acceptance creativity versus no creativity runco ( ) • person runco ( ) intertwined. in the theoretical approach i was wondering whether i had the appropriate tools (quantitative) and observations (qualitative) to measure or observe changes in mood and behaviour of people with dementia. which of the interventions are most effective in producing positive changes in the quality of life of people with dementia? how do we define positive changes, by whose standards? would pleasures of the moment count as positive changes, although short lived? are the people with dementia to be included in self-reporting and interviews? can they or should they be included in the various stages of the research process? the last question is of major interest, since it leads to important ethical issues of giving consent. another interesting question is whether or not arts-based programs play a role in slowing down the symptoms of dementia and therefore may be essential for individuals of normal aging to be engaged in. this question is being addressed now in the field of dementia research and there is a definite trend to pay attention to the arts in the service of health care more carefully. in addition i ask whether or not the physical environment matters? could it be that a very capable arts-based facilitator can overcome less favorable environmental conditions and still achieve positive changes working with seniors with dementia? in short, does the physical environment really matter? arts-based programs in dementia care: the literature on special care units (scu) versus non-special care units (non-scu) arts-based programs in dementia care are often listed in the literature as one activity out of many others ranging from bath-taking or laundry-folding to drawing. many times programs that are referred to are medical care programs, or government initiated programs that have nothing to do with artistic pursuits. the terminology used by various health care providers is at times confusing. while expecting to read infonnation on arts-based activities, i was surprised to learn that arts-based activities were many times lumped together with activities that have nothing to do with the arts. to find information on arts- based programs for the elderly with cognitive and physical impairments, mainly in dementia care, the review was expanded to studies on special care units as they are compared to non-special care units in long-term care facilities. special care units are believed to be environmentally safer than non-special care units for seniors with dementia and provide activity programs more suitable to the needs of confused and wandering elderly people with dementia. while there is an agreement on the safety issue, there are disagreements on the quality and benefits of arts programs provided in special care units. the office of technology assessment’s (ota) study, activities in special care units (scu), included: “singing, dancing, exercises, painting, crafts, games, parties, pet therapy, field trips, reality orientation, sensory and cognitive stimulation, reminiscence therapy, religious services, housekeeping, cooking, gardening, and sheltered workshop activities” (p. ) ota reports that the lack of appropriate activities is a frequent complaint in nursing homes. at the time of the report, ota was not “aware of other available data on the proportion of special care units that provide particular types of activity programs” (p. ) one of the descriptive studies reviewed by the ota’s report in was an early study conducted in - by weiner and reingold and published in . this study found that physical exercise and music therapy were the activities most used in the scus they surveyed and in specialized programs in other settings, followed by reality orientation and sensory stimulation. in a study of scus carried out by the university of north carolina and reviewed by ota, both scus and non-scus provided almost the same activity programs for their residents. studies, such as leon et a!. ( ), ota, ( ), lawton ( ), where activity programs are mentioned, provide no details as to the structure of the activities, the philosophical approach, or way of implementation. a study by itkin zimmerman, sloane, gruber-baldini, calkins, leon, magaziner, & hebel ( ), on various philosophical principles that drive special care in scus, identified “activities that are specifically designed for cognitive impaired” (p. ) but no details were provided as to the specific characteristics of the various activities. however, itkin zimmerman et al. ( ) did identify the need to support.self-expression and “a right to dignified care and appropriate mental and physical stimulation” (p. ). again, no descriptions are provided as to what constitutes appropriate mental and physical stimulation. in sloane, mitchell, weisman, zimmerman, foley & long ( ), researchers were advised to describe the characteristics of the scu with care, including a description of program activities. in the revised publication guidelines for care by the alzheimer society of canada, there is a short section on meaningful programs and activities, which emphasizes the theoretical aspect and the philosophical approach appropriate for a person with alzheimer’s disease. however, no details are provided for the kind of activities or their implementation. in a review paper by gloria gutman ( ), on the physical environment and alzheimer’s care, she points out that “various authors recommended that care facilities, through environmental design and programmed activities, provide opportunities for people to ‘burn-off excess energy” (p. ). the paper recommends several physical solutions such as wandering paths, loops and tracks in indoor and/or outdoor space. however, no details are given as to the kind of programmed activities for people with dementia and their implementation. in gerdner and beck’s ( ) survey of scus and non-scus in arkansas, it was found that “the types of activities provided in scus and non-scus did not differ significantly” (p. ). examples of activities included: aromatherapy, social functions, simple exercises, beach ball toss, children and volunteer visits, church, and sing-a-long. the survey described the state’s proposed regulations calling for programs that “encompass gross motor, self-care, social, and sensory-enhancement activities” (p. ). however, no references were made to the structure of the activities or the implementation. in marian deutschman’s article ( ) on quality of care in nursing homes, she emphasizes the importance of “search for breakthrough projects” (p. ) that may produce “options, opportunities, and learning” (p. ). she mentioned a facility that introduced -hour activity programming in its scu. no further details were given of the kind of programs involved. in grant, kane and stark’s article ( ), based on a telephone survey of nursing homes in minnesota, program features were identified in scus and non-scus. grant et al. ( ) found that scus were more likely than non-scus to use: outdoor activities, large motor skill activities, shortened or simphfled activities, music therapy, art therapy, ordinary task activities, intensive structured programs, programs using special activities staff occupational therapy, small group activities, pet therapy, spiritual activities, and sundowning programs. non-sc us were more likely than scus to use reality orientation and one-on-one activities. (p. ) in addition to comparing these features, grant, kane and stark ( ) concluded that music therapy was the only program used by a majority of scus ( %). they broke down some of the programs into further descriptions, for example: large motor skill activities were broken into balloon ball, balloon volleyball, rolling balls or ring toss. ordinary task activities included cooking, baking, washing tables, cutting coupons, folding linen or mending clothing. intensive structured programs included scheduling a greater number of activity programs on the unit at shorter intervals. special activities staff included psychologists or other specially trained activities staff. the most important finding was that many non-scus use similar approaches to scus in staff training, environmental design and programming, which could mean that “some scus offer rather meager specialized features beyond whatever advantages are achieved by a homogeneous population” (p. ). although more detailed information is provided in this article regarding the various features of the various activities, no description of implementing the activities is provided. in kuhn, kasayka and lechner’s article ( ), they make behavioural observations and comment on the quality of life of persons with dementia in assisted living facilities in a midwestern state in the u.s. kuhn et al. examine “the types of interactions and activities taking place among residents and staff on a given day”. he notes “the lack of purposeful activity . . .“(p. ) for residents in ltc facilities and the need for structured activities. kuhn, kasayka and lechner compare smaller facilities that are specifically planned for dementia care to larger facilities that are not dementia specific. this study found that people with dementia in larger facilities interacted less with other residents or staff, while in smaller facilities, residents were more interactive. the study found that “there were generally few structured activities in which residents engaged apart from eating and drinking” (p. ). in all the facilities in the study it also found “a lack of diversity in terms of activities engaged in by residents” (p. ). in the categories of behaviour, the study included a category for expression that was explained as “engaging in creative activity” (p. ). in the breakdown of the time spent by the residents on various activities, “engaging in expressive or creative activity (code e)” (p. ) was observed percent of the time. kuhn, kasayka and lechner ( ) suggested that activities in the smaller dementia-specific sites “were not appropriate to their (the residents) level of need” (p. ). no definition was provided as to what constitutes creative behaviour. however, other categories offered in the list could have been classified as creative activities if the definition of creativity was clear. creativity has the potential to manifest itself in other activities that were mentioned in kuhn’s observation such as: participating in a game, craft, intellectual activities and being engaged with media. again, with no descriptions, definitions or examples as to how each behaviour manifests itself, it is difficult to determine whether or not creative behaviour was present and observed. in chappell and reid’s empirical study ( ) on dementia care in scus and non-scus, residents’ activities are mentioned as resident-relevant activities or individualized care planning and are considered as one of the “dimensions of care” (p. s ) important to quality of care practices. chappell and reid mentioned studies that included the importance of activities in their review of articles written by morgan & stewart, , grant & potthoff, anderson, hobson, steiner, & rodel, . a quote from grant & potthoffs in chappell and reid’s article expresses the frustration of documenting residents’ activities and overall, perhaps, the reason for the lack of detailed activities in the literature. “the specific type of activities that should be encouraged is difficult to document, and certain activities may be more suited to residents of scus and others better suited to residents of non-scus” (grant & potthoff, , p. s ). chappell and reid did not elaborate on resident-relevant activities. they explained that the data collected on this dimension was limited and therefore did not allow “the development of extensive categories for this dimension” (p. s ). chappell and reid question the efficacy of scus in comparison to non-scus. they concluded that scus and non-scus are similar in care implementations and suggest that “scus are not homogenous and do not necessarily provide better care than non-scus” (p. s ). in a study by phillips, sloane, hawes, koch, han, spry, dunterman and williams ( ), it was found that “no statistically significant difference was observed in the speed of decline for residents in scus and traditional units in any of the outcomes” (p. ). this study’s view came from a medical model emphasizing bodily functions such as, transferring, toileting, eating, walking, dressing, activities of daily living, bowel continence, urinary continence and weight loss. no other activities were mentioned. a study conducted in finland in by ulla, johanna & raimo, on the effect of respite care of people with dementia in scus, concluded that no deterioration of cognitive functions or mood were observed as a result of the respite care and that “rehabilitation of demented patients seems to be possible to some extent” (p. ). activity programming is included in the features mentioned, which contribute to positive outcomes. however, some activities were mentioned indirectly for possible opportunities such as shopping, visiting a coffee place, restaurants, museums, galleries, kitchen activities, cooking and baking, gardening and outdoor activities, as well as dancing, singing and reminiscence. the study by ulla, johanna & raimo ( ) has a different philosophical approach to care than the previous studies mentioned in this review that advocated for structured activities. ulla, johanna & raimo see a limited rehabilitation potential by providing an “atmosphere of approval, success and confidence” (p. ) and by not providing structured activities at a specific time that could contribute to agitation. they found a - hour supportive atmosphere that “came from the ways of living normal every-day life” (p. ) was more effective. this study did not support patients being “pushed throughout the day according to rules and schedules” (p. ). no details were provided as to how the activities were integrated into the daily life of the patients. a non-comparative study by bober, mclellan, mcbee and westreich ( ) focuses on group therapy programs in scus, led by a social work philosophy to person-centred dementia care, presented a more developed practical and conceptual framework for art-based activities. this study responds to a gap in the literature regarding group work with people with dementia. the program, the feelings art group, was developed “as a stimulus for uncommunicative emotions.” it exposed its participants “to a variety of sensory stimuli and artistic activities on a series of universal topics including family, work, music, spirituality, nature, holidays, seasons, and end of life issues utilizing visual, audio, tactile, and olfactory stimulation” (p. ). the article goes into a detailed explanation of the theoretical and practical approaches to the program. this is a clear change from previous studies, which touched upon the topics of activities in scus but did not explore them in depth. this qualitative study presents case studies and quotes participants to demonstrate their remaining abilities. bober, mclellan, mcbee and westreich. ( ) believe that this model of group work could be replicated in other settings. however, at the time of submission, no replication trials had been undertaken. bober et al. ( ) stated that “clinicians, with the support of researchers, need to explore the efficacy of both individual and group interventions with this population in order to provide the best possible care” (p. ). while the latter approach to art-based activities shows flexible and sensitive understanding of the cognitive abilities of the participants and tries to minimize a sense of failure, the next study of seifert ( ) adopts a research approach reminiscent of a scientific medical approach, which emphasizes the process of data collection with less sensitivity to the participant’s own needs. this is a case study of one individual with dementia who expressed a desire to restore a family heirloom. although the researcher warns others about the complexity and frustration that was attached to the project, she still went ahead with the consent of the family and the participant to conduct this study. she also suggests the use of a psychologist, psychiatrist, or other professionals from related mental health field. the art project is presented in detail, down to the materials and painting technique. the replication of this study would depend on a researcher’s comfort level exposing participants to potential failure. the following study is a valuable review and critique of studies conducted by marshall and hutchinson ( ) on the use of activities with persons with alzheimer’s disease (ad). they open the topic by discussing the difficulties in doing research with this population and sum up the current state of research on activities engaging people with dementia. the study concludes that although “researchers have demonstrated interest in the use of activities with persons with ad, theoretical and methodological difficulties, unclear findings and gaps exist ...“ (p. ). the review, based on the work of about researchers, concluded that activities are valuable to self-esteem, sense of accomplishment, socialization, communication and pleasure. in several places, marshall and hutchinson also point out that “to date the knowledge, we have about the use of activities with persons with ad is minimal and fragmented” (p. ). from their own review they found that: many researchers did not identify a theoreticalframework that influenced their decision about choice ofan activity, and how they used the activity. rather, researchers alluded to a theoretical rationale or embryonic framework ... theoretical models did not guide the majority ofstudies reviewed and were used with varying degrees ofclarity and integration. theory was never tested in the research, but was used to provide a theoretical perspective. (p. ) in breaking down the types of activities used in the studies, marshall and hutchinson found that music was “the activity of choice” (p. ). “music was used alone in studies and was combined with other activities in seven studies” (p. ). marshall and hutchinson’s review goes on to discuss methodology. the literature review on arts-based programs in scus versus non-scus did not produce detailed studies that adequately described arts-based programs and the physical environments they occur in. it is not clear as to why there is such a gap of information. perhaps there are practical reasons that could explain the lack of detail, although most of the studies acknowledged the importance of arts-based programs. the lack of detail may have to do with the researchers’ professional background and training. many of them come from fields of psychology, social work, gerontology, medicine and nursing, and unless they have a personal interest in the arts or have been trained in the arts, they seem to ignore the research that may provide further detailed information regarding arts-based programs. however, in the absence of detailed information on arts-based programs for people with early to moderate dementia in the literature reviewed so far, i will further examine individual areas of arts-based therapies such as music therapy, occupational therapy, art therapy, the performing arts; drama, dance/movement and storytelling therapies, reminiscence therapy and life review and poetry writing, music therapy music as an intervention that contributes to mood changes is not a new phenomenon. “it has been used throughout history as a healing force to alleviate illness and distress” (bunt, , p. ). leslie bunt, a qualified therapist, director of the musicspace trust and research fellow in child and mental health at the university of bristol in the uk, gives an historical overview on the changes in the development of music therapy as a profession. it started as an intervention with mentally challenged adults and with adults suffering from psychiatric problems, especially schizophrenia. according to her analysis, current music therapy has its roots at the beginning of the twentieth century when hospitals invited musicians to entertain mentally ill patients to relieve mental stress. during world war ii music therapy experienced a significant growth and, although it was employed by the medical profession, it always was accused of a lack of rigor and systematic research to validate the influences music can bring about. the profession responded to the scientific call and in , the music therapy for older americans act was signed. this act gave public recognition to the power of music to increase cognitive and psycho social functioning and well-being in areas of working with children with learning and physical disabilities, with children and adults with visual and hearing impairments, with offenders, with aids and hiv patients, with hospice and cancer patients and with sexually abused people. music therapy also provides services to older people in long-term care facilities and in hospitals (bunt, ). in her historical review of the profession, bunt ( ) brought forward seven different variations on definitions of music therapies. her own definition includes many aspects of what music therapy is about: “music therapy is the use of sounds and music within an evolving relationship between client and therapist to support and encourage physical, mental, social and emotional well-being” (p. ). in their articles, researchers like bunt ( ), butterfield whitcomb ( ), mathews, clair and kosloski ( ), kneafsey ( ), aidridge ( ) and chavin ( ) state that music therapy allows therapists to observe and assess a range of abilities and behavioral aspects of their clients. in a case study bunt described ten different elements affecting behaviour and ability that form the theoretical basis of music therapy: the ability to observe physical movement, organization of time and space, manipulation of instruments, making vocal sounds as a response to musical stimuli, level of attention and concentration, social skills, self expression, feelings, communication and the level of motivation. bunt also recognizes the interdisciplinary nature of being a music therapist. she acknowledges the role of other therapy providers who contribute to a team effort in treating clients. she mentions speech therapists, psychologists, physiotherapists, occupational therapists, psychotherapists, arts therapists and social workers. music therapy evolved into an intervention that “is not solely a means of occupying people for a short time with music as a diversionary and entertaining activity” (bunt , p. ), but also evolved into a tool that allows assessments of cognitive and physical abilities. within the field of music therapy, bunt acknowledges four therapeutic models: “a medical model, psychoanalysis, behaviour therapy and humanistic psychology.” (p. ). the last model is of a major interest here and will be described in the next section. bunt also states that the current trend in music therapy is shifting from the medical model of patient and therapist relationships, where the therapist is in total control, towards a more balanced relationship where clients have more input into their treatment or at least where the therapists become aware of the clients’ individual needs, a process which echoes the theoretical approaches of person- centered interventions in dementia care. music therapy as it affects dementia care is considered a relatively new addition to the diverse list of applications in this field. among the articles on music therapy and dementia care, or music therapy and alzheimer’s of a dementia type, there are studies that explore the influences of music therapy on people with dementia. smith-marchese ( ) explored the effects of participatory music on reality orientation and sociability in long-term care settings; sambandham and schirm ( ) explored music as a trigger for memory that would contribute to better communications; johnson, cotman, tasaki & shaw ( ) tested whether listening to a mozart piano sonata may enhance spatial-temporal reasoning in people with alzheimer’s; ashida ( ) explored the effects of reminiscence music therapy on depressive symptoms in elderly persons with dementia; brotons and koger ( ) explored the impact of music therapy on language functioning in dementia; glynn ( ) looked into using music therapy as an assessment tool for psychological, physiological and psychosocial conditions; aldridge ( ) explored how music could reduce the need for tranquilizing medication, which helps reduce agitation; gotell, brown & echman. ( ) looked into how background music may impact bathing activity, which is known to create stressful times for people with dementia and their caregivers; hope ( ) explored how music contributes to relaxation in a multisensory environment, also known as the snoezlen intervention; fitzgerald-cloutier ( ) explored the use of music therapy to reduce the urge for wandering and therefore reduce the need for restraints. strengths and weaknesses as music therapy is linked to creative expression abilities and dementia the consensus among these researchers is that music has a significant impact on people with dementia in changing moods, recalling some memories, improving communication and social skills, helping to relax, to bring enjoyment, and to get in touch with one’s own feelings. in spite of the consensus and the variety of concerns raised regarding disturbed behaviours and various levels of abilities of people with dementia, most of the researchers lack outright references to the creative expression of seniors with dementia and only on rare occasions allude to it as self-expression. before starting the readings on music therapy, i assumed that creative expression abilities of seniors with dementia would be discussed whenever music was concerned; however, it was not so. depending on the direction the therapy takes, the activity described may stay only in the listening mode with no purposeful planned opportunities for creative expression. another interesting finding was that the term music intervention or music therapy is not necessarily limited to certified music therapists. music is not restricted to one group of therapists. however, the deep understanding and commitment to provide opportunities for people with dementia to express themselves creatively was most apparent in literature produced by music therapists and not by healthcare givers, such as nurses or psychologists. i don’t exclude the possibility that some healthcare givers are quite capable of conducting interventions based on music activities. however, this realization did not come through the literature on this topic. as the reading progressed i realized that selecting articles based on their titles caused confusion since the terminology used by various healthcare givers was not always the same terminology used by various arts therapists. for instance, the word program or activity may refer to bathing and not necessarily to artistic activity. some authors did make vague references to creative expression abilities or activities but failed to name them as such. understanding that various terminologies may become a barrier to finding the bigger picture of what music therapy is about, i rearranged my approach to reading source material and looked for concepts and ideas behind the titles and even behind the written text. i started to look more carefully at case studies and arts programs as they were implemented, while looking for clues and hidden meanings that may indicate the authors’ awareness of the topic of creativity in dementia care. the following sources were selected based on their deliberate inclusion of creative expression abilities or activities in music therapy: in their literature review on music and dementia, brotons, koger and pickett-cooper ( ) mentioned the positive effect music was found to have on “creative self- expression” (p. ). no definition nor explanation of what creative self-expression means was provided. halpern and o’connor ( ), in their study on implicit memory (memory that creeps out after being exposed to previous experiences), refer to music in connection with alzheimer’s disease. instead of using the words creative expression, halpern and o’connor use the terminology “esthetic framework” (p. ). not surprisingly, halpern and o’connor both come from healthcare fields — psychology and behavioural neurology. they also observe that they did not find any studies that explored the ability of alzheimer’s patients to appreciate artistic objects. in a curious observation, chavin ( ) states that music activity may not be suitable for everyone. york ( ) attributes to music therapy intervention the ability for creative self-expression. york offers no definition for creative self-expression; however, she does mention in her quantitative study “spontaneous singing” and “musical behavior to recorded music” (p. ). butterfield whitcomb ( ), in her article defending the use of music by other healthcare professionals and not only by certified music therapists makes several references to the importance of encouraging creative expression by people with dementia. in her words “music is a temporal medium. as it unfolds in a moment to moment flow, it moves us along with it, and we respond in spontaneous and often creative ways” (p. ). aldridge ( ) refers to singing as “an activity correlated with certain creative productive aspects of language .. .“(p. ). silber and hes ( ) in carruth ( ) report on creative songwriting produced by patients with alzheimer’s disease. although a definition of creativity in these articles is missing or lacking, there is an acknowledgment of the importance of creative expression as an independent factor that has the potential to improve the quality of life of seniors with dementia. bunt’s book on music therapy ( ) stands out in providing rich information that specifically supports activities that emphasize creative expression abilities, and her practical approach to music therapy demonstrates her deep understanding of what creativity means. in her program bunt ( ) provides “... freedom to improvise and explore.” (p. ) she is always ready to change direction to accommodate the needs of the people she works with. she takes account of changes moment by moment as the activity unfolds and makes sure her clients know that there is no right or wrong way to play an instrument. she points out that the arrival of her music instruments “attracts some interest and curiosity” (p. ), which are some of the attributes that constitute creative behaviour and which were addressed in question one. bunt describes music-making as a “creative process” (p. ); she supports it with jung’s ( ) approach to creativity and quotes him: “the creation of something new is not accomplished by the intellect but by the play instinct acting from inner necessity. the creative mind plays with the object it loves” (p. ). bunt goes to great length in analyzing creativity, as described by freud, jung and others who laid some of the theoretical foundation to art therapy. bunt bases her work on humanistic psychology, which focuses on “helping people realize their full potential ... and growth rather than treatment.” (p. ). she also includes issues such as: respect for individuals and their unique differences, the notion of ‘wholeness’, development of purpose and personal intentions, freedom of choice, self-growth, or self-actualization, particular in relation to others, creativity, love, peak experiences, self- esteem (p. ). bunt reports that after listening to music, some clients were inspired and could imagine “very rich images” (p. ). music has the ability to connect to our inner feelings and it “is very much beyond words, articulating inner forms beyond language” (p. ). the structure of some music sessions are described in detail and are characterized as free floating sessions that start with listening to some music and improvising on some instruments that may lead to a discussion on various topics. she stresses the potential collaboration between music therapy and other creative arts therapies such as art, drama and dance movement. she supports the idea of creating resource centers that would include the various therapies. although bunt’s writing on music therapy stands out among the others in its rich material supporting creative expression at all ages, it lacks in-depth analysis on creative expression and dementia. she does make brief mention of people with dementia but quickly returns to discuss children, young adults and older adults with mental illness. although not stated explicitly, she may be linking dementia to mental illness. in another brief reference to dementia, bunt suggests indirectly that perhaps people with dementia revert back to their childhood. this position is acknowledged in the field of gerontology and dementia care but it is not well supported. music therapy and the arts room in a therapeutic environment my original intention was to search for information on spaces dedicated to creative expression activities programs, especially in the articles selected for their information regarding arts programs. surprisingly, space description was scarce, which raises questions as to why the physical environment that surrounds arts program is totally ignored. is it because the authors felt it was not in their domain of expertise to comment on it? was the environment so unimportant that it was not included in the scope of research, or was it simply a matter of being unaware of it? perhaps the environment does not always play a critical role in some arts programs. perhaps it is a reflection of the conditions many arts program facilitators and therapists work under, who have to make do with whatever space is available due to economic constraints and the prevailing attitude that the arts are expendable and that arts programs are an item of choice and not of necessity. most studies on music therapy mention in general the location of the study such as at long-term care facilities, recreation centers, or a house in rural spain. no other details are provided. a quote such as: “both experimental and control conditions took place in the dining room with chairs arranged in a circle” (olderog, millard and smith, , p. ), may have been mentioned since the furniture became an important factor in the dynamic that took place between the music therapist and the subjects of the study. out of the relevant articles selected on music therapy, only two articles and their authors went into more detailed description. mathews, clair and kosloski ( ) described the setting for their study in detail from the size of the day-room and living room to the various items in the rooms such as furniture, microwave, dining tables and chairs, storage cabinets, telephone and more. they described the shape of the dining table and briefly mentioned reading lights and the proximity of the dining room and living room to the nurses’ station and courtyard. butterfield whitcomb ( ) utilized her long time experience working with seniors with dementia and came up with several suggestions to improve the space used for music therapy. she made a number of suggestions, such as eliminating all auditory stimulation except the music that was selected, drawing the drapes, providing incandescent lighting, forming the group in a circle and paying attention to the acoustics of the environment. she also recommended small sitting rooms or even bedrooms for listening to music. the word environment carried different meaning to different authors. authors from the field of healthcare refer at times to the environment as a symbolic representation for the ambience of a space or the atmosphere created by the people using it. the ambience is usually created by staff and occasionally by the designers hired to design those environments. failing to find information on the arts room linked specifically to the needs of people with dementia, i turned to literature published on the therapeutic environment, especially in dementia care, that i have consulted before for other purposes. surprisingly, well-known authors such as: powell lawton and kristen day, do not include details on the arts room in the scope of their work either, and briefly mentioned space allocations for arts activities. occupational therapy stein and cutler ( ) relate occupational therapy most closely to arts-based programs. both authors approach occupational therapy from a holistic point of view and call it psychosocial occupational therapy. stein and cutler consider occupational therapy to be “compatible with the uniform terminology for occupational therapy ( rd ed., , p. xii)”, and define it as: an applied science and rehabilitation profession concerned with enabling individuals with disabilities to reach their maximum potential in performingfunctions in daily living, employment, and leisure, through the use ofpurposeful activities. the occupational therapist’s treatment goals are to maintain, restore, and develop physical and psychological functions ... (p. xii) in a longer version of the occupational therapy definition, stein and cutler include creative expression and arts and crafts, among others, in the description of purposeful activities. they also refer to the environment as an important factor in assessing treatment outcomes. occupational therapy started in the s and has its roots in treating the mentally ill in hospital settings. today, occupational therapy is a combination of two major influences that developed in medical care. one is holistic medicine, focusing on wellness, which is based on “man’s harmony with nature” (p. ), while the other influence is the “moral treatment” (p. ), which “emerged as a counterbalance to the inhumane care of those with mental illness ...“ (p. ). stein and cutler identified four theoretical models for treatment that are based on medicine, psychology, education and sociology. first is the psychodynamic model, which focuses on interpretation and analysis of personality and behaviour. freud, adler, jung, rogers and erikson are mentioned as major theorists who influenced this direction. these scholars are referred to repeatedly in arts-based programs and by adopting their approaches to psychological treatment, there are bound to be some similarities in the various interventions. those similarities will be discussed later. the second theoretical model in occupational therapy is behaviorism, which focuses on changes to thinking, behavior and environment. the third model is based on the biopsychosocial model, which relates to sequential patterns of growth. the fourth model, systems theory, is the basis for the holistic approach in occupational therapy. it is an “eclectic model that focuses on the individual’s daily occupations as a means to master the environment” (p. ). at first glance, as stein and cutler laid out the theoretical foundation for their profession with references to creative expression and person-centered care, i assumed that their mandate “to maintain, restore, and develop physical and psychological functions ... “(p. xii) would change accordingly to accommodate people with dementia. however, the definition did not change and their mandate continued to carry overtones of prospective rehabilitation even in the section on dementia. unfortunately, rehabilitation is not a reasonable consideration at present, due to the nature of the disease, which is characterized by a progressive slow decline. on the other hand, no testing was done to prove otherwise — that increased creative expression activities could halt further deterioration of the brain. some scientists, like remi quirion, at mcgill university and howard feldman at the university of british columbia, believe that increased exposure to creative expression activities may increase new cell growth and connections among cells in the brain. stein and cutler also linked dementia to mental illness, although that showed poor understanding of the nature of this disease. according to agronin ( ), dementia becomes a mental illness when it is accompanied by other psychiatric disorders such as depression, agitation and psychosis. it depends on the type of dementia and how it manifests itself. seniors with dementia may have reduced memory but still may maintain a global intellectual function intact and in this case would not be identified as mentally ill. i suspect that if stein and cutler had a better insight into dementia, they would have rephrased some of their statements such as: “... occupational therapy and psychotherapy are interactive processes that rely on the client’s active participation. in this process, the client discloses personal information, identifies problems, and tries out new behaviors to cope more effectively with life tasks” (p. ). practitioners in dementia care know that it is extremely difficult or next to impossible to teach new information that will be remembered long enough to influence changes in behavior over time. studies that assess clients with dementia before and after intervention (brooker & duce, ) show that changes in behavior are short lived unless the intervention is repeated. the psychosocial occupational therapy supports an interdisciplinary approach to treatment and borrows from art, dance, music, poetry, psychodrama and storytelling therapies. it is easy to criticize such a formidable effort to cover so many areas of creative expression. however, the intentions of meeting a client’s needs in the area of creative expression that suits them should be applauded. the concern, then, is how capable is the occupational therapist in conducting each type of creative expression, and does it matter? when stein and cutler discuss art therapy they see no problem in including artwork analysis as a diagnostic tool. reid and chappell ( ) raise the issue of activities programs for seniors with dementia in special care units. although they found theoretical and empirical evidence in their literature review to support the value of activities in dementia care, they recognized the importance of how these activities were implemented and whether the staff was trained and available to facilitate those activities. no details were provided about the types of programs, nor the physical environment. it is interesting to read the opinions of various scholars on each other’s field of expertise and the comparisons between them. from the literature review it is obvious that there is a sense of competition, and there is definitely confusion about the boundaries between the various programs as they grow closer and cross over. rubin ( ), an art therapist, writes on occupational therapy: “all these fields use art as one of many possible activities, forms of recreation, or ways of being constructively occupied occupational therapy teaches task analysis — a method of breaking a task into its smallest components especially valuable for those who are neurologically impaired and/or developmentally disabled” (p. ). dailey ( ), also an art therapist, writes: “art therapy is not a form of occupational therapy occupational therapy is concerned with working on a conscious level, with the aim of developing technique in making products, using methods which are really more compatible with those of teaching “(p. xxiv). occupational therapy and the arts room although the environment was acknowledged in the definition of occupational therapy, this subject was rarely explored. stein and cutler’s book devoted less than one quarter of one page to it in a book of pages. in the section on the environment, while three questions were addressed, only two had direct relevance to the environment — questioning whether lighting, background sound, color, temperature, atmospheric pressure, visual distractions had an affect on the treatment outcome. in contrast to the lack of attention to the physical environment — specifically the arts room in stein and cutler’s book — an article by perrin ( ), a senior occupational therapist at the well-known bradford dementia group, discusses the possibility that the physical and social environments may not play such an important role in the lives of people with severe dementia as “commonly imagined” (p. ). perrin goes on to say that for a “severely impaired person ... the environment has ‘shrunk’ to envelop him in kind of a plastic bubble, which is about to feet in diameter” (p. ) and that staff have no problem interacting with this group as long as they are close physically to the clients and within the suggested ‘bubble’. perrin brings up the notion that if the closeness encourages interaction, it may be an important factor in space design and the attention given to activities in it. to make her point clearer she writes: maybe what is really important is not as much matching the lounge curtains to the wallpaper, as the smile on our face as we enter the bubble; not so much the tv in the corner, as the colourful magazine we look through with the client ... (p. ) art therapy j.a. rubin ( ) in art therapy: an introduction provides a brief historical overview of art therapy. art therapy was introduced in by margaret naumberg, who founded a school where the arts were central. in , florence cane, a gifted teacher in new york, discovered that “art had power to liberate not only the creativity, but also healthy psyches of” the artist in each of us” ( , p. ). the field gained momentum when victor lowenfeld, “a sensitive educator, who studied the nature of creative activity by teaching sculpture to blind children” (p. ) joined in . key therapists like mary huntoon, who worked with psychiatric patients in , adrian hill, who wrote the first book on art therapy, edith kramer, who developed a theoretical approach to art therapy working with children, all contributed to the expanding field. many art therapists entered the field through the pathway of art education, bringing with them the understanding of child psychology. other known artists turned therapists are don jones, hanna yaxa kwaitkowska, robert ault, arthur robbins, known for his expressive analysis, helen landgarten and shaun mcniff. the field of art therapy is still going through growing pains and self-examination. some in the field believe that the creative process is the main contribution towards healing and named it “art as therapy those who felt that art therapy’s primary value was as a means of symbolic communication sometimes called it art psychotherapy” (p. ). art therapy is also called: expressive analysis, clinical art therapy, psychoaesthetics or expressive therapy (p. ). there are about different approaches: . psychoanalytic theory — one of many ways to try to understand how and why people function as they do. . freudian psychoanalysis and jungian analytical psychology — based on an understanding of the dynamics of the patient’s internal world. . humanistic approach — emphasizes the acceptance and development of individuals in the present . person-centered or client—centred approach — developed by carl rogers in england. . gestalt approach, emphasizing the here-and-now — based on gestalt psychology, which focuses on sensation and perception. . rudolf arnheim focused on visual perception and influenced many in art therapy. . human potential — erickson milton, a psychologist, advocated collaboration vs. an authoritarian model of psychotherapy; pioneered the clinical use of hypnosis. . creative reframing . phenomeno logical approach — emphasizes the uniqueness of each individual experience of reality at each moment of time. . existential approach — emphasizes man’s capacity to take charge of his life and use free will. . behavioral approach — examines what can be measured systematically; studies of appropriate and inappropriate behaviours that provide the base for therapeutic intervention. . cognitive therapies — focusing on habitually distorted thought processes. patients are taught new and more adaptive ways to think and behave. a known cognitive psychologist, howard gardner, realized the value of making art in cognitive operations. . developmental and adaptive approaches — closely related to cognitive and behavioral approaches, these are based on the understanding of growth itself. viktor lowenfeld, mary wood (special educator), and geraldine williams (art therapist) combined the developmental therapy and the adaptive approach, which works towards normalization (rubin, p. to p. ). based on my own experience and some of my colleagues’, i use the visual arts as one of many ways to open communication with seniors with dementia. it is done in an effort to access their memories, provide an opportunity to express themselves creatively and most of all provide an opportunity for enjoyment, which in turn leads to improved quality of life. in examining the role of art therapy in relation to my own work in creative expression activities and dementia, i selected a sample of authors from several arts modalities as well as occupational therapy in order to represent the larger community. an exhaustive examination of the full extent of the literature is beyond the scope of this dissertation. i also contacted the director of the vancouver institute for arts therapy for advice and had numerous discussions with her on the role of art therapy and the population it serves. these discussions helped tremendously to sort out some misunderstandings and brought to light the similarities and differences between arts therapy and my program on creative expression activities for seniors with dementia. three key books that create the foundation for students of art therapy were selected for detailed study: t. dailey ( ), art as therapy: an introduction to the use of art as a therapeutic technique, s. mcniff ( ), fundamentals ofart therapy, and a.j. rubin ( ), art therapy, an introduction. these publications vary in their philosophical approach to current art therapy interventions. although art therapists claim expertise in working with a wide range of clients, the following review will bring to light why there are so few articles on art therapy with a focus on dementia. one example in particular demonstrates the lack of knowledge of dementia as a disease. cathy malchiodi ( ), an internationally recognized authority on art therapy, lists the people art therapy serves. among them are “people with cancer, hiv, or other serious illnesses, older adults with dementia, alzheimer’s disease, or disabilities (p. ). according to medical classifications (agronin, ), dementia is an umbrella name that includes different brain diseases and alzheimer’s is one of them. teresa dailey t. dailey, in art as therapy: an introduction to the use ofart as a therapeutic technique ( ) introduces a philosophical approach to art therapy. in the following passages dailey defines and explains what art therapy is: art therapy is the use of art and other visual media in a therapeutic or treatment setting (p. xii). therapy involves the aim or desire to bring about change in human disorder .... effective therapeutic procedures are those which result in fundamental and permanent change, and so, as ulman argues, therapy is “distinguishedfrom activities designed to offer only distraction from inner conflicts; activities whose benefits are therefore at best momentary. (p. xiii) dailey states that although painting is somewhat therapeutic to the artist, the final product is an end in itself, and is exhibited as a work of art; the process of creating it is secondary. ... in therapy, the person and process become most important, as art is used as a means of non-verbal communication (p. xiii). however, dalley recognizes that not all clients can be rehabilitated and she points to “those people with severe mental or physical handicaps, psychogeriatrics, and the long-term institutionalized” (p. xviii). with this population she agrees that the arts should be used “for enjoyment, exploration, and stimulation”(p. xviii). she also places less emphasis on the final product and sympathizes with people in hospitals and institutions, where “art therapy is probably their only outlet and opportunity for individual expression, stimulation, and creative occupation” (p. xviii). for them, dailey suggests a “variety of sensory and tactile experiences; making things with others help interaction, communication, and awareness of other people” (p. xviii). the initial thought of dailey’s view of art therapy is that there is an expectation of rehabilitation for clients entering the treatment of art therapy, except for mentally ill people with whom the expectation is lower in terms of artwork quality and their ability to produce it. perhaps she is right in her view, but what is continually disturbing is the tendency to lump the elderly in long-term care facilities together with mentally ill people without discrimination. the lack of understanding of what dementia is all about is apparent. dailey’s book was published in , but must have been written in the late ‘ s, when the new person-centred approach to dementia care was in its infancy and not yet a recognized force. the sensitivity and the compassion for the elderly with cognitive and physical disabilities are present, but the knowledge of dementia as a disease is lacking. this is most apparent in one chapter in dailey’s book, written by suzanne charlton ( ) who discusses art therapy with long-term residents of psychiatric hospitals. charlton states that “[o]lder people often develop fixed thought processes with a deterioration in their ability for abstraction and expression” (p. ). such a statement would draw harsh criticism from scholars in the field of gerontology who would identifs’ it with ageism (prejudice against older people). according to teague, mcghee, rosenthal and kearns ( ), “despite the progression of senescence from a biological, psychological, and social perspective, the aforementioned changes are not universal” (p. ). as decline in aging is not universal, so are the symptoms of dementia, which differ from person to person and take on various cognitive and physical impairments. not all seniors with dementia suffer from depression and not all display mental disorder except for forgetfulness and disorientation. it all depends on the stage of the disease, how much damage has occurred to the brain and where in the brain it happened. chariton ( ) also suggests that “too many art materials can add to the confusion of older residents keep the length of the session short” (p. ). based on my experience working with seniors with dementia, a rich presentation of meaningful resource material was one of the highlights of enjoyment and delight that contributed towards improved communication, engagement and interaction with seniors with dementia. it was also a source of inspiration. the creative expression activities program was planned to be long enough to allow meaningful socializing, gain trust of the participants, refresh memories or provide resource information for immediate use, and allow seniors to take their time to digest information and react to it. dailey focuses mainly on children, adolescents, young adults and the mentally ill. people with dementia are included in the group of the mentally ill. although there are gaps in knowledge of dementia as a disease and the care for it, arts therapy still contains many elements that are important for seniors with dementia. with time and broader education, arts therapy will adjust to the specific needs of seniors with dementia. it is almost redundant to say that dailey understands the importance of providing opportunities for people to express themselves creatively, since her occupation is focused on providing such opportunities. in her writing she sums up her thoughts about creativity: “any theoretical approach to art therapy must take account of the concept of creativity, which has its roots in all art processes” (p. xv). she also recognizes the important role the therapist takes on in stimulating responses and social interactions. depending on the approach to intervention, “art therapists are participants as well as observers in the therapeutic process” (p. xx). the art therapy session is basically divided into two stages: the first stage involves painting or other creative activities, while the second stage is a discussion that focuses on the art produced, how it makes the client feel and how it reflects their feelings. dailey shares some concerns regarding the artwork’s analysis produced during the intervention: “even the most experienced art therapist cannot be totally confident about correct interpretation without active participation and co-operation from the client within the therapeutic encounter” (p. xx). this statement has implications when interacting with seniors with dementia: a. how do we define co-operation? b. would stories based on illusions still be considered as co-operation? c. how can drawings based on active participation but on no memory recollection be approached in the process of art analysis? the most critical question that is yet unanswered is: is there a valid reason why the artwork produced by people with dementia needs to be analyzed psychologically? what knowledge are we going to gain from it? how relevant is the content in the drawings when the past may have been forgotten and so is the present? why analyze the work of seniors with dementia if rehabilitation is not a serious consideration in a progressive disease with no cure? charlton ( ) in dalley’s book does bring up the issue that art analysis is not always the right thing to do, especially with long-term residents who just want to paint. in this situation according to charlton “... therapeutic interpretation are neither appropriate nor beneficial” (p. ). it is not clear if people with dementia are included in this observation. yet, the emphasis is always to encourage creative expression. at the beginning of my work with seniors with dementia, i often asked myself whether i was missing an important source of information by not going into art interpretation for therapeutic reasons. i also asked myself whether my direction in trying to understand creative expression and dementia should be explored under the wings of arts therapy. the more understanding i gained about art therapy and about dementia as a medical condition, the more i realized that there was no point in using the arts for psychoanalytical purposes. i was there to enjoy the moment together with seniors who have dementia. i had no need to probe into their problematic behaviour or attempt to change it — even though i wished to improve problematic behaviour, such as restlessness, pacing and shouting. however, the prevailing goal was to improve the quality of life of seniors with dementia. and so, this approach did not become part of the creative expression program. dailey recognizes that art therapy is an evolving profession that still struggles to gain full recognition. according to her ‘the ultimate goal must be to establish art therapy as an integral and valued part of every treatment programme” (p. xxvi). dailey’s view on art therapy and the therapeutic environment dailey refers to the therapeutic art room briefly here and there in her book; chariton actually devotes a separate title to it: “the art room” for mentally ill patients in psychiatric hospitals. “the art room provides a setting where residents can experience trust, experiment with different behaviour, exercise choice, and feel a sense of competence” (p. ). she states that most hospitals “lack space and facilities for creative work” (p. ). she would like to see art rooms where residents are allowed “to get messy, to experiment, to ponder, or to invent” (p. ). the art room should include stimulating things such as books, pictures and other interesting objects. charlton ( ) would like to see a variety of space, including spaces for one-on-one intervention and for group activities. she even suggests specialized areas individuals can claim as their own, doing activities such as “pottery, weaving, and printmaking” (p. ). shaun mcniff mcniff is another key scholar in art therapy whose work was recommended by lois woolf, in particular his book fundamentals ofart therapy ( ). out of the three publications recommended, it was the writing by mcniff that caught my imagination and became a source of inspiration. as a result, i have been reading most of his writing; his philosophical approach to arts therapy and to the engagement in the arts in general is very relevant to creative expression in dementia care. although i differ with him on several issues, the overall concept of going with the flow fits within the program on creative expression activities for people with dementia: mcniff defines and describes art therapy as: the engagement of both materials and emotions (p. ).. .art therapy is an expression of our desire to know more about images and people and to do more with them ... whether in words or images, they are concerned with exchange and opening to whatever presents itself (p. ). mcniff also states that art therapy is about contradictions, “[t]he psyche is not as predictable as the highway ... it is not fixed in material forms” (p. ). he also tries to reassure therapists who feel the need to be in control by planning every detail in advance and advises them not to be “... afraid of chaos ... looking for themes and messages . . .“(p. ). this statement is actually the theoretical foundation for qualitative research, such as ethnography and grounded theory, and may lead to beneficial observations in a clinical setting. although the overall themes in the creative expression activities program are pre-planned and the first segment of each session is directed through visual and verbal stimulations, the rest of each session is free flowing and ‘spontaneous’ as mcniff calls it (p. ). by having all sessions planned in advance, lisa, an art educator who became an art therapist, commented in a dialog with mcniff that advanced planning to reduce risks of chaos in the classroom might have jeopardized the flow of creativity (p. ). mcniff believes that children in unstructured lessons do not need much to start drawing. however, in my experience, seniors with dementia need to be stimulated and provided with information to initiate the process of creative expression. pre-planned sessions versus spontaneity raises very interesting questions that are worth exploring in future research. would seniors with dementia initiate art work if: a) art supplies were displayed in view and in easy reach? b) would they start drawing if a facilitator was not present? in short, c) what would it take to engage seniors with dementia to become involved with art work? mcniff does not limit himself to the visual arts only. he believes in endless possibilities within the media. he is interested in what other colleagues are doing with other materials and likes to integrate them in his own work, such as rhythmic expression, storytelling and the performing arts (p. ). he sees the motions of dance when helping a person hold a brush and he likes to talk during the intervention. unlike dalley, mcniff does not feel comfortable in therapeutic art interpretation alone for the following reasons: the use ofdiagnostic labels is actually one of the most anti-therapeutic things we can do... the label serves the purpose ofkeeping people in their designated places. this can be catastrophic with psychopathological labels. even positive and illustrious labels, titles and degrees can become serious obstacles to change and imaginative transformation. (p. ) meniff finds it is more important to approach clients in a comprehensive way through interaction, to find out what they want and meet them where they are at that moment. as stated before, he is not worried about unpredictable situations that may not fit “within the confines of the psychopathological diagnostic drawing test clichés because we fear what we can be, what we are not” (p. ). he continues to explain that “interpretation is both intuitive and intellectual, verbal and non-verbal. art interpretation is sensual and imaginative ... for me it includes both cognition and perception” (p. ). interestingly, mcniff reveals that art therapists don’t participate in the art activity with their clients. they act more as observers: art therapists ... rarely communicate through their medium because their artistic values are not based on interactive process, and this makes it unnaturalfor them to work together with clients ... if images are generated by the patientfor the purpose of diagnostic assessment, then it does lead to role confusion when the therapist paints. (p. ) mcniff raises an interesting question as to what makes an act an artistic act. according to him “art is whatever manifests itself’ (p. ) and needs to include the soul of the person. art is a matter of intent. what is perceived as art depends upon the attitude and values of the person. anything, afound object, or a series of lines can become art. the only limits are the range ofthe artist’s perception, available materials and imagination. (p. ) he does not see the products produced during psychological testing as art, but rather as graphic exercises, since no soul was attached. occasionally someone manages to produce an artistic product. mcniff’s view on art therapy and the therapeutic environment mcniff sees a link between the environment, health and creative activities. he focuses on the importance of a designated space for artwork—the studio. however, no other details are provided: i emphasize the studio because we need it more right now. i know that i desire the studio. there is not enough of it in my lzfe. two decades ofworking with graduate students and art therapy colleagues has shown me that they hungerfor it too, and the phenomenon of art therapy needs the studio. ff walk into a medical environment with its chemical and antiseptic smells, my soul is aroused only to the extent that i want something else. the medical environments can sometimes be the antithesis ofart. the studio summons the artist in me and the artist in art therapy. (p. ) j. a. rubin in art therapy: an introduction ( ), j. a. rubin’s book is the third publication recommended by lois woolf as an excellent resource with a detailed overview of art therapy and its history. in this book, the focus is on children and young adolescents. rubin’s clinical vignettes did not include seniors with dementia. here is rub in’s definition and description of art therapy: combination ofgenuine expressive art activity with some kind of thoughiful reflection on the process ... in fact, it is what distinguishes it most clearly from related disciplines. in almost all approaches to art therapy, there is an image-making time and a reflection time. the proportions may vary, and the thoughtful component may be silent. art therapy, however, is the involved doing p us the relaxed reflection ... creating art can indeed be therapeutic, and verbal therapy can be very effective. but there is something about the iwo together that is really spectacular. (p. xxi) rubin states that all art therapists understand the importance of the creative process: equally central in effective art therapy is knowing how to observe another’s creative process acutely, sensitively and unobtrusively. becoming aware of all the temporal, spatial, and other non-verbal aspects of people’s behaviour with materials takes time and practice (p. ). rubin then quotes robert ault, one of the key figures in the art therapy field, who wrote in an unpublished manuscript, “a picture may be worth a thousand words, but to observe the making of a picture is worth ten thousand words” (p. ). according to rubin, the best way to understand what art therapy is all about is to observe an actual session, and even better is to participate in it. rubin brings to light a debate within the art therapy community regarding the multi-arts therapy or generalist approach, as some prefer to call it. unlike mcniff and his colleague paolo knill, rubin seems reluctant to support the multi-arts therapy approach and she states: it is easy to tell the difference between art therapy and close relatives like music, movement, dance, drama, or poetry therapy — at least when each is offered separately. but there is considerable confusion about approaches, which use multiple modalities. multimodal approaches are usually called by names like “expressive (arts) therapy” or “creative (arts) therapy”. although there are afew individuals with the ability to evoke andfacilitate expression in more than one artform, such people are rare. more often, a therapist has training in one creative art modality, along with an openness to and comfort with others. (p. ) although she has some concerns about the multimodal approach, she realizes the growing interest in it. it is evident in britain (p. ) and in canada (p. ). in canada she mentions stephen levine and ellen levine, who co-direct a training program in expressive arts therapy in toronto (isis-canada). “although most art therapists are still trained and skilled primarily in the visual arts, there seems to be a greater openness to the use of other art forms than in the past” (p. ). rubin also differentiates between what is therapy and what is therapeutic, “if the primary purpose of the activity is learning and/or fun, it is certainly therapeutic, but it is not art therapy” (p. ). rubin’s view on art therapy and the therapeutic environment there is a brief comment in rubin’s book regarding the therapeutic environment: “regardless of what is done, there are a series of necessary steps ... they begin with setting the stage, a major element in promoting expression in art therapy. a well-prepared environment can inspire creativity, whereas a confusing or uncomfortable one can have [a] most inhibiting effect” (p. ). d. fausek d. fausek produced a practical guide to art therapy groups ( ), whose title promised an interesting look at the subject. some of fausek’s suggestions seem to fit less well with seniors with dementia. although the guide is planned for them, the need to focus on task completion and choice— making activities for low functioning clients, some of her suggested activities do not fit her own classification of abilities. one example is a suggestion for rubber cement glue to be used with low-level clients. i am puzzled by this suggestion, since low-level clients may end up taking it in their mouths or spreading it on their clothes or hands. there are better substitutes for rubber cement, which is a toxic glue. on the other hand i do agree with fausek about using written comments around the artwork. the artwork serves here as a tool for communication and therefore as a platform for non-verbal communication. she also has no problems helping hand-over-hand if needed. fausek likes to display the artwork for enjoyment and stimulation. the performing arts i have combined the discussion of the two therapies of drama and dance/movement for two reasons: the literature on drama and dance/ movement with a focus on therapy is so new that hardly any material has been written on them. and, as the two are linked together under the title of the performing arts, they share many characteristics. if anything surprised me in the process of reviewing literature on creativity and dementia, it was the literature on therapeutic performing arts. i was not expecting to see it linked to a research inquiry for assessments purposes and outcomes. perhaps, like many others, i assumed that the performing arts are there to draw on our emotions and provide artistic experiences. but to try and measure the impact on people with dementia is an interesting concept. is it then measurable? do we have the tools for it? if not measuring, then how are we going to describe drama, dance and movement? do we even have the language to describe them? and what are we going to describe? it is clear to me more than in any other form of artistic therapy that this research needs to be conducted by the artists themselves. they need to be an integral part of it, intimately immersed in it, fused with the process and with the clients involved. dance/movement therapy dates back only as recently as the s. the dance/movement therapy was started by several women who used dancing to interact with people who suffered from severe psychological disturbances (levy, ). the new field got organized under the american dance therapy association (adta) in “to establish and maintain high standards of professional education and competence.” (http://www.adta.org) adta is a member of the creative arts therapy coalition that includes other associations of music, art, poetry, drama and expressive arts (wadsworth hervey, ). here is a definition and description of dance/movement therapy. “dance/movement therapy is the psychotherapeutic use of movement as a process, which furthers the emotional, cognitive, social and physical integration of the individual. dance/movement therapists work with individuals who have social, emotional, cognitive and/or physical problems. they are employed in psychiatric hospitals, clinics, day care, community mental health centers, developmental centers, correctional facilities, special schools and rehabilitation facilities. they work with people of all ages both in groups and individually. they act as consultants and engage in research.” (http://www.adta.org). research on this topic reveals only a handful of publications. according to wadsworth hervey ( ) “there is no scholarly dialog on the subject in professional publications” (p. ). two articles were found that discussed dancing. one article by milchrist ( ) is an autoethnographic narrative on the relationship between the author and her mother who has dementia. the author initiated dancing with her mother over a period of years until she could not dance any longer due to advanced alzheimer’s. dancing was very much a part of the author’s mother’s life and the ability to dance lasted long into the disease. milchrist tells us how her mother enjoyed the dance and how they could continue to communicate although verbal communication was almost impossible. it is a wonderful first-hand story that had many moments ofjoy in spite of the limitation imposed by the disease. the second article is by palo-bengtsson and ekman ( ), who discuss social dancing with people with dementia residing in a nursing home in stockholm. it is a phenomenological study that explores a dancing activity that has taken place in that nursing home for years. the study was carried out in . the results of the study suggest: “that dance music was a good stimulus for making social contacts. the earlier-trained social patterns, old social habits, and general rules seemed to awaken to life in the persons with dementia” (p. ). palo-bengtsson and ekman ( ) also observed that the people with dementia would wait for their caregivers to initiate the invitation to dance and then would follow them. the study concluded that it was important for caregivers to show “individual creativity, spontaneity, and supportive nursing care” (p. ). although the authors observed “response to rhythm, attention to dance music, and joy and amusement” (p. ) demonstrated by the people with dementia, creativity was not included in the list of observed behaviour. i wonder why creativity was important enough to be linked with the caregivers but was omitted when describing the people with dementia. was it because of low expectations that people with dementia were not capable of creative expression? or did the authors have a different understanding of what constitutes creative behaviour? the physical environment is described with very few words: “the dances took place ... in a large hall which was used for several activities for elderly patients, relatives, and caregivers” (p. ). the main scholar on drama therapy is dr. davis-basting, who is director of the center on age and community and an associate professor in the department of theatre and dance at the peck school of the arts, university of wisconsin-milwaukee. her creative work includes nearly a dozen plays and public performances. davis-basting, who received her ph.d. in theatre arts and dance from the university of minnesota in , continues to direct the timeslips creative storytelling project, which she founded in , and makes numerous presentations on creativity and aging across the united states. timeslips is an innovative method of group storytelling by seniors with dementia. in the training materials for the program, she writes: creativity is: adding something new to the world, how we know ourselves, how we grow ourselves, how we connect to others ... through creative expression, we share ourselves and connect to others. creative expression is importantfor everyone, but it is even more importantfor those with dementiafor whom other avenues ofself-expression can be severely limited. (p. ) as in other therapies, davis-basting combines several creative activities such as storytelling, reminiscence and drama. in a visit to milwaukee to meet with karen stobbe, who facilitates timeslips under the direction of davis-basting, i observed the interaction between karen and her seniors with dementia. the stories that were produced in a collective effort by as many as seniors with dementia brought joy, laughter, sadness, jokes, and even slight criticism of peers and staff. besides davis-basting’s work in drama therapy, i found only two qualitative articles on drama intervention. in one by lepp, ringsber, holm and sellerjo ( ), the authors, who are mainly from the nursing profession, refrained from calling it drama therapy. the focus of their study was on the caregivers. two categories emerged from the analysis: interaction and professional growth. what was so interesting in this article was the fact that the caregivers were surprised at the level of expression demonstrated by their patients with dementia. although reluctant to join the program, the caregivers found the program personally rewarding while their patients bettered their quality of life; they “showed their feelings, both joy and sorrow, more openly, their self-confidence grew and they showed greater interest in their surroundings” (p. ). drama intervention for therapeutic reasons is so new that the authors in this article had to rely on the defmition of drama in education: “. . . defined as the dynamic embodiment of events involving human beings, is described as a valuable tool for intellectual and emotional growth” (p. ). in another publication by o’toole and lepp ( ), they add: “drama is both a method and a subject, seen from an holistic perspective, and integrates thoughts, feelings and actions” (p. ). lepp, ringsber, hoim and sellerjo ( ) found that a combined program of dance, rhythm, song, storytelling and conversations, designed especially for seniors with dementia, worked well. there were no references to the physical environment. drama programs, drama therapy, drama intervention — whatever name is adopted in the future — is such a new area that empirical literature on this topic is next to nonexistent. anecdotal reporting from practitioners in the field of creative expression programs is rich in stories of interesting experiments using a host of activities including drama. it is difficult to isolate drama from other creative expression interventions when it contains so many elements of others. based on the literature review so far, there is undoubtedly a great deal of overlap among the various models of creative expression interventions. many try to box combined interventions under the roof of one discipline or another, but in reality it is the mix of interventions that appeals so much to so many of the facilitators who work with seniors with dementia. reminiscence therapy, life review, life reflection and stoiytelling reminiscence, life review and storytelling are all ways to communicate with others and express ourselves verbally. a literature review revealed a wide range of publications that focused mainly on these topics in regard to people of nonnal aging. however, specific literature on reminiscence, life review and storytelling in regard to people with dementia is less available. ten articles and two books were found to be relevant to this discussion in the pursuit of creative expression abilities demonstrated by seniors with dementia and the environment associated with these activities. although the literature differentiates between reminiscence, life review and storytelling, based on my experience, these elements are interchangeable when facilitating discussion sessions with seniors with dementia. however, understanding the fine differences is important in this relatively new area of research, started in the s by robert butler ( ). the fine differences are important because they are linked directly to the qualifications and training a facilitator may need to acquire to handle the analysis part of life review or life reflection. reminiscence therapy and storytelling could be left at the first stage of expression without going into depth of evaluation and explanation of one self (staudinger, ). ursula m. staudinger ( ), a prominent researcher in human lifespan development at the dresden university of technology, germany, defines reminiscence and life review: reminiscence is defined as the remembering of life events, and flfe review is defined as the remembering of events plus the further analysis ofthese events. (p. ) the distinction refers to the extent and sophistication of the further analysis and possibly also the intentionality ofsuch analysis ... reminiscence is defined as reconstructing life events from memory, and lfe review is conceptualized as reconstructing life events from memory plus further analysis (explanations and evaluation) of the materials. (p. ) the function ofeither of the two processes, reminiscence and life review should be determined only in a second step ... for instance, establishing intimacy could be achieved both by sharing memories and by uncovering insights about one life. reminiscence, in particular, may be linked to functions such as boredom reduction, oral history, or conversational pleas ure. functions specflc to lf’e review may include, for instance, alleviating depression, teaching others, solving a problem, enhancing life insight and wisdom. (p. - ) in her literature review on this topic, staudinger finds that the aim of life review is “to repair and return to normal levels of functioning ...“ (p. ), while remembering the past usually follows a chronological timeline. she felt that a new term needed to be introduced to capture “single life events and sequences of events” (p. ) and named it life reflection. in an empirical study of life reflection versus life review, staudinger ( ) found that older participants engaged in life reflection to “balance and integrate their life as lived” (p. ). although staudinger does not refer directly to creative expression abilities in discussing life reflection, she does bring up elements that follow the definition of everyday creativity such as growth in self-understanding and finding the meaning of “life as lived”. to encourage the process of life review, butler ( ), in kasi-godley and gatz’s article ( ) on psychosocial interventions for individuals with dementia, used triggers such as: written or taped autobiographies; pilgrimages, either in person or through correspondence; reunions; construction of a genealogy; creation of memorabilia through scrapbooks, photo albums, collection of old letters; verbal or written summary of life work; and preservation of ethnic identity (p. ). although literature on reminiscence in normal aging is growing, kasi-godley and gatz concluded that “little attention has been given to how dementia might affect the ability to reflect . . .“(p. ). according to butler ( ), brain damage should not prevent health service providers from using life review therapy with people with memory impairment. on the contrary, kasi-godley and gatz refer to cook ( ) and kiernat ( ): that reminiscence may be particularly importantfor demented individuals’ psychological health given that the progressive deteriorating nature ofthe disease erodes the ability to achieve present successes and makes individuals increasingly dependent on past accomplishments for a sense of competency ... demented individuals retain much of the capacity to recall and integrate the past because remote memory is spared through most ofthe disease process. (p. ) although the memory of factual details such as dates, names and locations may be affected with seniors with dementia, other aspects of memories may still be intact. in my interactions with seniors with dementia i have witnessed numerous similar situations, for example, one may remember learning how to ski, but may not remember where and when it took place. one may remember being married, but have forgotten to whom and if children were involved. comments such as “i must have been married at some point, aren’t we all?” are common. this fascinating behaviour has been observed by researchers and practitioners in the field of dementia care and was discussed in depth in question one. understanding the fine differences of how memory manifest itself in people with dementia is most important, especially when facilitating sessions on creative expression activities. until i read patrick colm hogan’s ( ) book, the mind and its stories, narrative universals and human emotions, i struggled with finding literature that would support my approach to creative expression activities where fabricated stories told by seniors with dementia were as important and meaningful as those perceived to be true stories. one could never be absolutely sure whether a story may also include experiences of others to be claimed as their own. hogan compares this behaviour to children’s storytelling and supports it with quotes from miller, hoogstra, mintz, fung and williams ( ), “a child might appropriate and use for his or her own purposes someone else’s experiences, someone else’s story. framed in this way, any story has the potential to be personalized story” (p. ). hogan sees this behaviour in adults as well and states: it seems likely that this sort ofthing occurs with authors all the time. it seems likely that authors incorporate autobiographical material even in entirely nonautobiographical works (for example, in filling out characters in historical novels) through just such a process ... retellings supports not only our account of aesthetic responses, but parallel accounts ofartistic creation.” (p. ) so, according to hogan ( ), we are all capable of incorporating experiences of others into our own storytelling intentionally or unintentionally. although hogan does not discuss dementia, he does discuss the link between literature and the human mind, which includes storytelling and memory and which he calls “verbal art” (p. ), where people share their “ideas, perceptions, desires, aspirations, and ... emotions it is an activity engaged in by all people at all times ... something people do, and always have done, in all parts of the world ...“ (p. ). verbal art is a form of creative expression. while hogan calls it verbal art, cheston ( ) describes the action of storytelling as a “new shape and form to the present” (p. ). yen-chun li yu-tzu dai and shiow-li hwang ( ) define reminiscence “as a mechanism for adapting to stress” (p. ). all of these authors support the definition of everyday creativity that was discussed previously. bernie arigho ( ) summarizes very well the relationship between reminiscence and creativity: the success ofreminiscence work is measured in terms of the extent to which it enables people to participate in meaningful and enjoyable activities. the focus is on being active and creative in the here and now, though the inspiration is derivedfrom the there and then. (p. ) from medical observation, we learn that people with dementia suffer from illusions and that fabricating stories is considered a common symptom of the disease. from a medical point of view this is problematic behaviour, less tolerated and in need of being treated. from a societal point of view, there is a perception that these people may have lost their minds, they may be considered unreliable and living in their own world, one that is disconnected from reality. however, if we accept their reality, we can help remove the stigma attached to their behaviour. the change needs to occur in our attitudes towards people with dementia. by creating a friendly and accepting environment, we allow the persons within the disease to continue to live their life to the best of their remaining abilities. cheston ( ) in his article stories and metaphors: talking about the past in a psychotherapy group for people with dementia reacts to the common perception that people with dementia are engaged in meaningless talk, “their memories are defective, and their reminiscences are of little importance...” (p. ). he argues “that there are other stories to be told about the talk produced by people with dementia if we can only allow ourselves to listen to the poetical, the metaphorical aspects of language” (p. ). he also sees: self-narratives and stories ... as a mean of communication and as a focus for exploration. they can permit a rich world, a place ofre-membrance, a re-creation of people, ideas and images so positioned and constructed that they lend new shape and form to the present. the creation ofa story permits a world in which present dilemmas, uncertainties and hopes can be lived through. (p. - ) since we cannot, at the present, change dramatically the progression of the disease, we might as well work with it instead of against it. the question is then, how do we go along with realities experienced by seniors with dementia? how does reality manifest itself in the physical environment and in human relationships? the answers lie in our services, interventions, planning and in design solutions for people with dementia. for example, in a documentary memory lane ( ) on architectural design for people with dementia, one solution provided was very imaginative. given the average age of seniors with dementia today, we can trace back to the s and l s when these people were in their prime. through research we can recreate old streets, neighbourhoods, colors, furniture, fashion, ice cream parlours, cars, music, dances, food, customs, and so on. in this documentary, a long-term care facility recreated a section of a street along its property that was designed to replicate the s in a typical north american urban setting. the ‘neighbourhood’ provided opportunities for seniors to sit in coffee places and purchase their own ice cream as they used to in the past. for normal aging people it may look like a hollywood movie set, however, it is real to seniors with dementia who can still remember some of their past. speakers at an american society on aging conference on generation gaps in denver, , commented that about every ten years, there is a significant shift in the western society’s taste in clothing, music, customs and so on. if that is true, then the present generation of baby boomers could adjust the make-believe street to include elvis presley, bob dylan, mini-skirts, portable phones, fat-free foods, photos of known citizens and politicians and more. this approach is the exact opposite of reality orientation as developed by dr. camp cameron in ohio (discussed earlier) for seniors with dementia, which is still being practiced in various facilities. instead of constantly repeating information that may sound foreign, meaningless or hard to retain, seniors with dementia would be less stressed if we did not confront them or try to train them in the hope they may change. a study by woods ( ) on reality orientation has shown that long-term memory retention was not very successful or significant after the interventions were completed. kasi-godley and gatz ( ) also concluded that reality orientation as an intervention has “little to no effect on behavioural functioning” (p. ). in comparison to reality orientation that focuses on training individuals to be more aware of the time of the day, the month, meal times and room finding, reminiscence therapy, according to yen-chun lin, yu-tzu dai and shiow-li hwang ( ), focuses on developing “new relationships [that] meet psychosocial and developmental needs” (p. ). still, reminiscence therapy is not appropriate for everyone and may have dangerous consequences (thorgrimsen, schweitzer and orrell, ). careful consideration needs to be exercised. if facilitators are not qualified to handle crises, there is a need to arrange backup professional help in case of emergency. reminiscence, life review, life reflection, storytelling and the therapeutic environment in the articles on reminiscence as it is linked to dementia care, very little attention is addressed to the environment. the source for reminiscence therapy by joyce l. harris ( ) mentioned the physical environment: a conversational grouping in a small, quiet, well-lit area is idealfor a reminiscence group. a small area is likely to have better acoustical properties which creates a better listening environmentfor everyone. a small area also creates a feeling ofgreater intimacy among group participants (p. ) harris also points out that furniture and seating arrangements are very important contribution to successful reminiscence sessions. review only seven years ago when i started to look for practical ideas to implement in my work with seniors with dementia, i was struck by the lack of information. what i did find was inappropriate, comprising child-like activities that did not reflect the seniors’ cognitive and physical abilities. nor did i find detailed information that made a link between seniors with dementia, their abilities to express themselves creatively, and the physical environment to accommodate these activities. today’s literature offers a wide variety of arts-based programs for seniors with dementia; however, there are still major concerns to be dealt with. the literature review revealed the following outstanding issues: lack of understanding. dementia as a medical condition is misunderstood due to misinformation, lack of education, lack of experience working directly with seniors with dementia. some scholars from medical backgrounds lack deep understanding and first-hand experience of what creativity is all about. they may understand it intellectually, but depending on their definition of creativity, they may fail to see how creativity manifests itself in spite of the disease. artists who are also researchers have a tendency to rely on the medical model for psychological assessments of seniors with dementia. expectations. there is a tendency to lump people with dementia with the mentally ill without discriniination. there are lower cognitive and physical expectations of seniors with dementia. there is a tendency in the literature to agree on minimizing the sense of failure when interacting with seniors with dementia. however, some may enjoy an appropriate challenge that may reflect respect and appreciation of their remaining abilities. programs. most articles focus on methodological aspects of art-based programs while very few discuss how those programs are implemented. there is a shortage of meaningful programs, with purposeful and diverse activities. there is a need for structured activities that allow the seniors to set the pace that suits them. the consensus among researchers is that music has a significant impact on people with dementia in changing moods, recalling some memories, improving communication and social skills, helping to relax, to bring enjoyment, and to get in touch with one’s own feelings. at the same time, some consideration may be given that music may not be suitable for everyone. a strong pattern is emerging that a mix of arts-based programs is the most popular intervention among facilitators who work with seniors with dementia. however, there is definitely confusion about the boundaries between various programs. facilities. in reviewing the literature on special care units (scus), an important finding was that many non-scus use approaches similar to scus in staff training, environmental design and programming. this could mean that some scus offer rather meager specialized features that scus are not homogenous and they do not necessarily provide better care than non-scus. an approach is developing that perhaps residents in long term care facilities should not be pushed throughout the day to follow rigid rules and schedules, but rather enjoy a calmer pace. people with dementia in larger facilities interacted less with other residents or staff, while in smaller facilities, residents were more interactive. one observation made by perrin ( ) may have a great impact on the architectural design and communication with seniors with dementia. perrin found that people with dementia respond best when other people and objects are placed within to feet diameter around them. in perrin’s words, the environment has ‘shrunk’ to envelop the person with dementia in kind of a plastic bubble and that staff has no problem interacting with this group as long as they are close physically to the clients and within the suggested ‘bubble’. perrin brings up the notion that if the closeness encourages interaction, it may be an important factor in space design and the attention given to activities in it. in other words, the “bubble’ concept may have an impact as to how physically we interact with seniors with dementia, display our stimulating objects such as art materials, furniture arrangements, locations of easels, strategically placed instructors and so on. new directions for research and implications for practical implementation numerous articles stated that doing research with seniors with dementia presents many difficulties. the population is frail and vulnerable and usual research methods may not be practical. researchers need to take these limitations into account. lack of understanding. need for programs that educate medical personnel, potential caregivers and arts-based program leaders about dementia — differentiating mental illness from mental deterioration and considering the implications for care and activities. expectations. need for research on seniors with dementia to study their reactions to programs in care situations. are expectations appropriate to their cognitive and physical abilities? programs. need for research on successful programs with emphasis on practical applications. facilities. need for research on the effect of facility design on the well-being of seniors with dementia, on caregivers and medical personnel as it is linked to creative expression activities. recommendations the literature review revealed that there is a strong need for a multidisciplinary program of creative expression activities for seniors with dementia. in order to achieve it there is a need for educational programs to train facilitators that would combine expertise in dementia care with programs on creative expression activities in a comprehensive way. in addition, architectural schools need to include courses on designing for the elderly with a focus on dementia. there is a need for forums where researchers and practitioners from various arts-based programs can meet to exchange ideas and create new alliances. ideally, such forums would include input from the medical community. a strong pattern is emerging that a mix of arts-based programs is the most popular intervention among facilitators who work with seniors with dementia. there is a great deal of overlap among the various models of creative expression interventions. as they grow closer and cross over, many try to box combined interventions under one discipline or another, but in reality it is the mix of interventions that appeals so much to so many of the facilitators who work with seniors with dementia. clearly, much more research is needed in the area of creative expression and dementia, especially with a focus on what works and what does not work with these seniors. there are no studies that explore the ability of alzheimer’s patients to appreciate artistic expression. this is, potentially, a new area for research. researchers should be encouraged to cross the boundaries of their own fields and expertise. they should be allowed to stretch their imagination and develop fresh new ideas without being constrained in the name of science. i believe that every bit of new information has the potential to spiral into new adventures and trigger additional new thoughts. working with seniors with dementia is full of opportunities to learn about them and about oneself. it is a mutual journey where the researcher and the seniors being studied can learn from each other through layers and layers of rich information. this section of the literature review covers the meaning of everyday creative expression and how seniors with dementia experience it. the recent literature on research in creativity focuses on the work of several prominent scholars. it contains their definitions of creativity to further develop an understanding of what creative expression means and how it manifests itself (fig. , see page ). it is based mainly on the handbook of creativity ( ) that describes the work of sternberg and his colleagues, on creativity, mark runco’s ( ) most recent work, and on art, mind and brain: a cognitive approach to creativity by howard gardner ( ). following this review, i will provide selected definitions of creativity followed by a discussion of how they follow or contradict the assumptions and approaches to research on creativity and dementia i have pursued. these definitions may derive from quantitative or qualitative studies and from less rigorous studies due to the complexity of this topic and the difficulties arising from conducting research in this field. gaps in the understanding of the two domains of creativity and dementia and in the combination of them will be identified to provide the base for a new definition that may be more appropriate to research on creativity with seniors with dementia. the new definition will provide a fresh starting point and will continue to evolve as the inquiry progresses. eight models were reviewed for their appropriateness to tackle research on creativity and dementia and although no one specific model was definitive, many of these models provided important information as the backbone for this study. the eight models cover the six approaches in sternberg’s ( ) handbook of creativity, along with runco ( ) and his colleagues’ approach in his review article creativity, and gardner’s ( ) cognitive approach. although sternberg and runco’s work are more recent, i found that gardner’s approach fills in gaps of information missing in the others and appears to be more relevant to research on creativity and dementia. emerging approaches to creativity research robert sternberg ( ) introduces the work of scholars in the field of creativity and identifies six approaches to creativity research: a. psychometric: “creativity ... as a measurable human factor or characteristic” (mayer, ). sterneberg and o’hara ( ) were looking for multiple answers “as opposed to one single correct answer” from their subjects. the answers were quantified and rated for creative abilities based on comparative scoring of creative versus non-creative persons. psychometric assessments take place in a controlled environment. this control may limit the ability of creativity to be expressed spontaneously and in an unpredictable manner. b. experimental: the study of creativity in which subjects are engaged in creative thinking through solving problems. the aim is to identify factors that improve or inhibit creative thinking. as in the psychometric approach, the experimental approach utilizes quantitative measurements in controlled environments while analyzing tasks prepared in advance that were administered to the subjects. the aim of this approach is to identify the various phases in creative thinking a person goes through. according to ward, smith and finke ( ), research on differences between creative and non-creative thinking in experimental observations found two kinds of cognitive processes: first, generative processes based on existing knowledge and which are part “of ordinary minds” (p. ); this knowledge may or may not inhibit creativity. second, processes that are of an exploratory nature and, based on potential function, can be untested proposals that are marked by “originality and appropriateness” (p. ). ward, smith and finke report on examples of exploratory and generative processes experienced by a writer (ward et al., ) or by an inventor (finke, ). the two processes may happen independently or be combined and operate under various restrictions. they may be generated with a specific goal in mind or for an open-ended situation (ward, smith and finke, , p. ). c. biographical: a qualitative, richly detailed narrative study (gruber & wallace, ) of a creative person through a single case history or through a comparison between creative persons. the biographical approach can also be studied through quantitative analysis of a group of creative people (simonton, ). the aim of this approach is to identify factors in life events that foster creativity. a positive aspect of this approach is that the subject is studied in a personal authentic environment, in contrast to the controlled environments used in psychometric and experimental approaches. the down side of this approach is the concern that the findings of one case study may not be applicable to another case. however, this approach is useful in combination with other approaches as a rich source for qualitative data. d. biological: the study of creativity through cognitive neurosciences that examine brain activities as the subjects are engaged in creative thinking (martindale, ). none of sternberg’s colleagues in the handbook of creativity discusses how biological impairments impact creativity. e. contextual: the study of creativity in a social and cultural context. collins and amabile ( ) examine intrinsic and extrinsic motivations and their effects on creativity. based on empirical studies, they concluded that intrinsic motivation is “conducive to creativity” (p. ) and is generated by the individual for enjoyment. extrinsic motivation is defined as having to meet external requirements such as awards and competitions. this motivation is harmful to creativity. csikszentmihalyi ( ) uses the “systems perspective” to explain the creative process and its external variables. csikszentmihalyi concludes that in order for creativity to be considered valid, it must be accepted and recognized by the community. f. artificial creativity: this approach seems to be irrelevant to the topic of creativity and dementia and was omitted. in the review chapter fifty years of creativity research in sternberg ( ), richard mayer analyzes the various approaches to creativity research and comments on the gaps and challenges that still exist in the pursuit of answers to questions such as: can creativity be measured? which cognitive processes are involved in the creative process? do life experiences matter? what motivates creative people? what role do biological and evolutionary factors play in creativity? how do social and cultural contexts affect creativity? can creativity be enhanced? he also sees a need for “new and useful methodologies” to study creativity. he suggests that some of the discussions lean towards “speculation that is only loosely related to empirical data,, by sweeping generalizations that are not tightly supported by research evidence, and by a level of theorizing that is too vague to yield testable predictions” (p. ). mayer’s comments on the state of research on creativity resonate with some of the thoughts, questions and difficulties that impede the process of gathering relevant information on creativity and dementia. providing empirical evidence to support the assumptions of scholars’ statements on creativity can be a formidable task. the literature is short on empirical studies, and the ones provided do not offer an appropriate approach that can capture the essence of creativity in formation. publications in general cover views that are so widely spread that the focus on creativity and dementia is rarely addressed. it is clear that scholars in this field are grappling with understanding creativity and how to conduct appropriate research that would fit multiple situations. one clear message from mayer’s review is that there is a need for a multidisciplinary approach to creativity research. one approach some scholars (gardner, redfield jamison, ) find attractive is to focus on people who are already known for their creative powers, since their creative abilities are obvious and easy to access for quantitative evaluation or qualitative observations. perhaps understanding acknowledged creative people could assist in analyzing what makes these people think or act creatively. what external (environmental) and internal (personal) conditions promoted their creativity? could these findings be replicated elsewhere in a quest to understand creativity and dementia? adopting the biographical approach that has been applied to known creative people to understand creativity, it might be possible to study a creative person who has dementia. however, if we use the biographical approach to research creativity, we indirectly adopt the notion that not all people are creative and therefore everyday creativity may not be an accepted concept. but if we adopt the opposite assumption that all human beings are creative, (ward, smith & finke, , p. ) it could be possible to study any human being. the question is then what kind of creativity are we looking for? are we looking for exceptional creativity or everyday creativity — one or both? perhaps we will need to reconsider, readjust and redefine what creativity is. the following section reviews the existing definitions of creativity put forward by these scholars. i am aware of the scientific aspiration to meet rigorous academic standards, but i also respect years of experience and wisdom accumulated in this complicated field of inquiry. therefore, some definitions will be backed by empirical findings and some will be based on theory. acknowledging the difficulties and the lack of rich empirical evidence should not prevent continuing efforts to pursue creativity research. perhaps some untested thoughts may lead to a new direction for others to follow that will result in more rigorous tests in the field. there are many factors to be taken into consideration when researching creativity and perhaps utilizing one approach to creativity research at this time is not appropriate and trying to prove the existence of creative expression through empirical research is only one factor in a much more complicated undertaking. in his most recent review article on creativity, runco ( ) faces the same complicated task as sternberg did in trying to sort out the various approaches to creativity research and advance the understanding of it. runco claims that more than ever people need to use their creative abilities in a fast moving technological society, which he describes as a “cultural evolution” (p. ). he states that his review of the research is based on a framework suggested by rhodes ( , ), which is divided into four categories of creativity research: a. person. “research on personal characteristics” (runco, p. ), such as a person’s broad interests, intuition, or a “firm sense of self as ‘creative” (barron & harrington, , p. ). b. product. outcomes “that result from the creative process”, such as “publications, paintings, poems, designs” (runco, p. ). most research that uses this approach deals with artists well-known for their talents as opposed to ordinary people. runco also states that “productivity and creativity are correlated but not synonymous” (p. ). c. process. a description of a process over a long period of time. usually involves “divergent thinking and problem solving” (p. ). d. press. was introduced for the first time by harry murray ( ) and continues to be used. it refers to “pressures on the creative process” (runco, , p. ). for instance, amabile ( ) refers to the physical environment as a source for influences on the creative process. runco felt that the four categories of person, product, process and press were not sufficient for a comprehensive approach to understanding creativity and added information from specific disciplines that were “organized by behavioral, biological, clinical, cognitive, developmental, historiometric, organizational, psychometric and social perspectives” (p. ): let me describe each in turn. behavioral perspectives. runco supports epstein ( , in press) in connecting creativity with “insight and novelty” (runco, p. ) epstein, runco suggests, tested participants in a pre-arranged setting, to see how previous experience could contribute to creative behavior in problem solving. epstein explains “insight” as a result of “spontaneous integration of previously learned response” (p. ). the biology of creativity. based on medical findings, runco suggests that creativity research from a biological point of view leans towards “... behaviors and aptitudes” (p. ). studies that were based on past medical surgeries to inhibit seizures referred more to the skills of the patients and not to their creative abilities that are defined as “... originality and appropriateness, intuition and logic” (p. ). based on empirical evidence, katz ( ) discovered that the creative process does not limit itself to one hemisphere but requires the collaboration of both sides of the brain. other researchers, such as hoppe & kyle ( ), used electroencephalography (eegs) to detect brain activity in a group of patients with bisected hemispheres and in a control group. they found that both parts of the brain are engaged when verbal and emotional expression is concerned. clinical research. runco sums up creativity research in this category to be focused mainly on mental disorders such as schizophrenia and other disorders such as alcoholism, suicide and stress. realizing the limitations in past research runco, ebbersole and miraz ( ) turned to a new direction, in which the definition of creativity was expanded to include self-actualization within the context of health promotion. runco, ebbersole and miraz conducted a study with university psychology students. they administered three questionnaires that measured “creative traits, preferences, and attitudes” (runco, ebbersole and miraz, , p. ). they used the self-actualization scale (sas) developed by jones and crandall ( ). to their disappointment they could not establish cause and effect between creativity and self-actualization. however, they did conclude that “creativity may allow individuals to become self- actualized, or self-actualization may lead to creative behavior” (p. ). runco, ebbersole and miraz, also make the connection of creativity and self-actualization with “coping and adaptive skills” (p. ). this connection is also supported by rhodes and his theory ( , p. ) that creativity rises from “deficiency needs for love, acceptance and respect” (p. ), which in turn lead to self-growth, self expression and self-actualization. runco also emphasizes the importance of research in this category for the understanding of the individual’s subjective experience. cognitive research. this category is often studied for creativity by using tests for divergent thinking (providing several answers to a problem), fluency (number of solutions), originality (uniqueness), and flexibility (variety) (runco, , p. ). runco sees these tests as predictors only that may indicate the potential for creative thinking. although the definition of creativity was expanded to include all of these factors, the solutions for problems provided in the various tests needed to demonstrate that they are appropriate solutions as well. and so appropriateness was added to the definition of creativity that looks for novelty, innovation, flexibility and fluency. developmental research. most of the research in this category, according to runco, is applied to children and adolescents, although research on creativity and adulthood is mentioned here with reference to the latest work by lindauer ( ). runco did not look at the work of other scholars with expertise on creativity and aging, like gene cohen ( ) or howard gardner ( ). economic factors and theories. according to runco, this category lacks empirical validation. however, he considers some suggestions that hard times may stimulate creative thinking. educational and historical research and organizational perspective. while these approaches to creativity research were described by runco, they were too far removed from the topic on creativity and dementia. although educational research is rich in studies on creativity, it mainly focuses on children and adolescents. psychometric research. in this category, creativity is tested for its potentiality through “paper-and pencil” tests, which usually are administered to ordinary people as opposed to eminent persons. this approach to creativity research is involved in comparative studies and their ratings. psychometric testing is relevant to the topic of creativity and dementia, since people with dementia often go through neuropsycho logical testing, such as the diagnostic test of drawing a clock, to evaluate memory capacity, which indirectly may or may not indicate creative abilities. this category lacks appropriate tests for seniors with dementia to determine the level of their remaining creative abilities. social research. runco reminds us that early creativity research was focused almost entirely on the individual until scholars like amabile ( ) shifted some of the attention to social influences on the creative process. in these situations, depending on external factors, creativity could be discouraged in the case of competition and criticism, or enhanced by working with other people. there is no mention of creativity, aging and dementia. however, understanding how creativity manifests itself within a social context is very applicable to people in institutional care, such as seniors with dementia in long-term care facilities. in his conclusions, some of runco’s comments on the state of creativity research and its findings may provide support directly and indirectly to the importance of research on creativity and dementia. runco concludes, “that creativity is beneficial. creativity facilitates and enhances problem solving, adaptability, self-expression, and health” (p. ). he suggests that “creativity research is best understood by considering various perspectives” (p. ) and that researchers need to stay flexible in their approach when studying the subject. he recommends taking into account the person and their environment. runco sees the importance of the interplay between clinical work and cognitive perspectives and between basic research and applied research. he makes us aware that creativity is expressed in many ways and in many domains. he recognizes the need to study everyday creativity, which is the ability to cope with everyday problems that does not call for what he calls “high-level achievement or expertise” (p. ). runco applies his concept of everyday creativity mainly to children. he is disappointed that the field of creativity research is still far from understanding the “mechanisms that underlie creative capacities” (p. ). a major concern of his is that creativity per se is not really researched, but novelty, insight, productivity and behavior are; he considers these factors the products of the creative process. he agrees with other researchers that “originality is necessary but not sufficient for creativity” (p. ) and yet he misses the connection czikszentmihalyi ( ) makes that society has the final say as to what makes a thought or a product creative, which leaves originality in question. of note in particular in runco’s article is a report of the results of his survey asking individuals in the field of creativity research to rank the importance of research topics, ranging from the most important to the least important. in a list of items, mental health was , while neurobiology, mental illness and therapy were at the bottom of the list. testing and measurement got very low priority as well, while creative behavior topped the list. which brings us back to the question posed in this paper: what does creative behavior mean? what does creative expression mean? based on this survey it seems that people in the field of creativity research do not see a strong need to explore the connection between health and creativity. although runco did not elaborate on the reasons, it is possible that the pressure to produce empirical findings in the health services domain discourages research known for its difficulties and complexities. to reinforce this possibility testing and measurements also got a low priority. perhaps the results of this survey may indicate the gap between those who see creativity as a personal trait of eminent artistic talent and those who see creativity manifested in daily routine. it may indicate that any less than eminent talent deserves less attention. these two publications, runco’s creativity research handbook and sternberg’s handbook of creativity, are considered to be milestones in creativity research; they bring together the work of many scholars in an effort to identify major approaches to creativity research. mumford used these two handbooks as a starting point for his research on creativity. by studying their content, he concluded that there is a need for “critical comparative tests contrasting the merits of different methods and theories, elaboration and extension of our traditional samples and our traditional measures, and more attempts to develop integrative models” (p. ). he also concluded that there is a need for more research on topics such as: “practical innovations, cross-field differences in the nature of creative thought, and the effect of creativity on people and social systems” (p. ). like other scholars, mumford’s definition of creativity is still evolving; however, he states that “creativity involves the production of novel, useful products” (p. ) understanding mumford’s background and expertise in the field of industrial and organizational psychology makes it clear why the link between creativity and a product is an important indicator of creativity for him. in response to mumford’s definition of creativity, runco agrees that creativity involves the “production of novel and useful products”; however, he argues that the potential for creativity, which precedes the actual performance, does not bring forth a product to evaluate. therefore, “creativity may sometimes not involve any productivity whatsoever”... productivity, then, is an objective indicator but only sometimes indicative of creativity” (p. ). runco’s response opens the arena of creativity research to new directions, which potentially may help support research on creativity and dementia. other perspectives on creativity and expression creativity. according to the random house webster’s college dictionary ( ), creativity is “the ability to create meaningful new forms, interpretations, etc; originality,” while being creative “result[s] from originality of thought; imaginative,” and create is to “evolve from one’s imagination, as a work of art or an invention.” this definition still leaves the reader with insufficient explanation, which leads to the next question: does creativity always need to result in an invention? is any deviation from inventiveness considered less or non-creative? in sternberg’s handbook scholars such as mayer, gruber & wallace, martindale, lumsden, feist, lubart, boden and nickerson ( ) make strong connections between creative abilities and products that can be evaluated for their creativeness. gruber and wallace ( ) define creativity as “novel and value: the creative product must be new and must be given value according to external criteria” (p. ). if there is an agreement in most definitions that creativity involves the creation of original and useful products, who decides what is original and useful? what evaluative systems do we have for assessing originality and usefulness? according to csikszentmihalyi, ( ) even if an idea or an act resulted in a product, it would not be considered creative unless society accepted and recognized it as such. as he states: originality, freshness ofperceptions, divergent-thinking ability are all well and good in their own right, as desirable personal traits. but without some form ofpublic recognition they do not constitute creativity. in fact, one might argue that such traits are not even necessaryfor creative accomplishments. (p. ) csikszentmihalyi’s definition helps redefine creativity and opens it to new possibilities that may lend themselves to research on creativity and dementia. according to csikszentmihalyi, creativity only exists when it evokes some form of public recognition. but public recognition can exist on different levels within specific contexts. for eminent artists, public expectation is high. for seniors with dementia, the entire context changes and so do public expectations. two years ago, i mounted an art exhibition by seniors with dementia as an event exhibiting creativity. more than , visitors attended, many of whom left comments showing their surprise at the level of creativity on display. they were expecting much less from these seniors. in this instance the community showed their positive support of the exhibit based on the level of expectation. not all scholars in the field see the end-product as a necessary element in defining creativity. according to ward, smith and finke ( ) creativity may or may not result in generative expression and may stay just in the exploratory phase in the form of an idea or creative thinking. feist’s definition of creativity ( ) still supports the notion of inventiveness but broadens the definition to include the ability to be flexible as well, through “novel and adaptive solutions to problems” (feist, , p. ). expression. in webster’s new world dictionary ( ) expression means, “a putting into words or representing in language. a picturing, representing, or symbolizing in art, music, etc. a showing of feelings, character, etc. (laughter as an expression ofjoy). a look, intonation, sign, etc. that conveys meaning or feelings (a quizzical expression on the face)” (p. ). this definition is sufficient to cover the various modes of verbal and non-verbal expression that will be discussed later in more detail. based on these definitions, it is possible to develop a new definition of creativity that could be more inclusive, embracing expressions exhibited by people who may not be considered by society to possess creative abilities, such as seniors with dementia. if creating is an act of expression, it may be original or not, yet it brings something into being — perhaps a line drawn on a blank paper, a song, a thought, an idea. in other words, expression changes the existing status quo and creates new situations. therefore, a new situation may be considered equal to a creative act. in art, mind and brain, a cognitive approach to creativity ( ), gardner admits that he knew very little about adults with brain damage when he first began to work with them. he describes how he came to appreciate the “person” within the individual. working with these individuals he realized how much they varied from one another and how they still were able to make the best of their remaining abilities. gardner’s work in the us and his appreciation and positive attitude towards brain-damaged people gained recognition in the s, about ten years before tom kitwood in england introduced the concept of personhood. personhood stands for an approach that relates to the person within the individual with dementia as opposed to the medical model, which treats the symptoms of the disease. it is possible that the two scholars did not know about each other’s work, since both were situated in different countries and came from different fields of expertise; gardner from education and kitwood from social work. gardner’s main interest in working with brain-damaged adults came from a desire to understand “better the nature of human artistry” (p. ), which would shed light on impaired cognition as well as normal cognition. gardner based his work on neuropsychological studies that focused on language disorders such as aphasia. he studied gifted artists who had suffered brain damage and “normal nonartistic individuals” (p. ). both groups were observed working in three art forms: painting, music and literature. it should be noted that gardner did not question what is considered creative. he did not elaborate on how he decided who was considered a highly artistic person, and who was not. although gardner seemed to divide individuals into artists and non-artists, he still believed that “nearly all of us have attained some modest artistic skill. we can sing a song, make a drawing, tell a story” (p. ). gardner was more interested in the abilities of brain-damaged people to express themselves and refrained from discussing the quality of the expression. the meaning of creativity, gaps in in formation the overarching definition of creativity, as these various researchers present it, seems to concur that ideas and products are creative as long as they are new and useful. in addition, they cite the ability to adapt, maintain flexibility and fluency and be valued by society. none of the researchers discussed the issue of creativity and dementia. sternberg’s handbook ignores the subject of creativity and aging altogether. runco’s article on creativity does bring up briefly the issue of aging and creativity but not creativity and dementia. gardner discusses how creativity manifests itself in people who have suffered a stroke, bisection of the brain, and other damage. while gardner makes it clear that not all individuals with brain damage are mentally ill, other researchers (eisenman, ) actively associate creativity with mental illness or other exceptional personal traits. all researchers in these publications agree that creativity is a complicated subject and there is a need for more research. many researchers agree that one approach to the study is not sufficient and that research should consider studying creativity from several approaches, including interdisciplinary approaches that would provide empirical findings (gardner, , mayer, ). based on creativity definitions reviewed here, i came to the conclusion that none of them are relevant in their entirety to the study of creativity and dementia and none reflect the situation in which seniors with dementia operate. some parts of the definitions may apply, such as the need to be able to adapt to new situations, flexibility, fluency, everyday creativity and society’s acknowledgment of the creative idea or act. what is missing is literature on aging that may provide information on how creativity manifests itself in later life with a possible focus on dementia. opening up the definitions from eminent creativity to everyday creativity allowed researches like runco and richards ( ) and runco, ebersole and mraz ( ) to further develop this concept and its contribution to the quality of life at every stage in human development. they say that creativity manifests itself in being curious, in an ongoing process of self-evaluation and personal growth. quality of life in adulthood is defined by the level of physical, social, mental health and role function (anderson, ). teague, mcghee, rosenthal, and kearns ( ) defined quality of life as “a dynamic process in which each adult has unique or different health needs” (p. ). their understanding of the quality of life of older people supports runco, ebersole and mraz ( ) in defining the concept of everyday creativity, which values the social, emotional and spiritual aspects that contribute to the notion of what makes a person whole. in his ( ) response to mumford ( ), runco elaborates further on how he sees everyday creativity manifest itself: everyday creativity may be involved in the problem solving that occurs when an individual drives to work and decides what attire is bestfor a particular day ‘s schedule, improvises while cooking or decorating the home, decides the best way to entertain guests or children, and in countless other fairly mundane ways. without recognition of everyday creativity, we will overlook individuals whose creativity is not manifested in art, science, or some professional fashion. (p. ) following this train of thought, runco and richards ( ) state: everyday creativity is the originality of everyday lfe, the doing ofsomething new in the course ofone ‘s activity at work or leisure ... in every case, the activity involves innovative elements which are also meaningful to others — two common criteria for creativity” (p. ). [creativity] “emerges unpredictablyfrom the richness ofour diversity — both within our own minds, and between all of us in this multipotentialled world. we should cherish this diversity, preserve, and enhance it, for it may help us in ways we cannot imagine now.” (p. ) based on these definitions and explanations of creativity, we can now investigate further how creativity manifests itself in later life and examine the qualities valued the most at this stage. to understand creativity in later life, i will describe three studies. the first, a qualitative study done by fisher and specht ( ), concerns seniors in normal aging. the second is a quantitative study by smith and van der meer ( ) that is included to provide contrast with the two qualitative studies. the final qualitative study by davis basting shows how creativity manifests itself in seniors with dementia. creativity and aging in successful aging and creativity in later life ( ), fisher and specht conducted a qualitative study over a period of two months, was to examine the link between successful aging and its relationship to creative activity as older people see it. the study included thirty-six seniors, men and women, ages to . these seniors participated in an art exhibit and were interviewed for their understanding of successful aging and creativity. two independent interviewers asked closed and open-ended questions from a survey questionnaire. the interviews lasted from to minutes. using content analysis, six topics emerged as important for successful aging: “a sense of purpose, interaction with others, personal growth, self-acceptance, autonomy and health” (abstract, p. ). reports of the participants’ opinion on being involved in creative activities showed that it contributed to “a sense of competence, purpose and growth” (p. ). artistic creativity encourages “problem—solving skills, motivation, and perceptions”, (p. ) all of which enhanced the quality of the seniors’ “everyday lives” (p. ). fisher and specht found that participants identified adaptability, flexibility and coping as important elements to successful aging; these are the same elements that other researchers in creativity describe as essential factors in the creative process. fisher and specht also found that their participants valued their artwork, the opportunity to use their skills, express their thoughts and use their imagination. most participants expressed joy and satisfaction in being involved in a creative process. they also referred to these activities as an opportunity to forget their health problems and to become absorbed in their work. the activities encouraged a positive outlook on life and provided an opportunity to engage in social interaction. fisher and specht found it intriguing that the participants put more emphasis on the creative process than on the product itself, and on using the same “dynamics, motivation, attitude and imagination” in other areas of their lives. it appears that these dynamics allowed them to “express a sense of self and manage everyday life” (p. ) fisher and specht link their findings on creativity and aging with the definition of creativity by lubart and sternberg ( , pp. - ): “creative performance involves the intellectual processes of defining and redefining problems, choosing appropriate problem-solving strategies, and using insight processes to solve problems”. with this study the definition of creativity and aging can be expanded to include the ability to define the problem, choose appropriate strategies and use insight to meet challenges in life. as one of their participants put it: “i’m not done with life. in some ways, i think i’m just beginning to see what it’s all about” (p. ). fisher and specht concluded that life itself is a creative expression. their findings represent the core of how many old people approach their lives. anecdotal reports and personal experience working with elderly people serves to support this observation. smith and van der meer in creativity in old age ( ) provide an example of an empirical study on creativity in old age. although not put forward in a clear way, the underlying assumption is that not all people are creative. the aim was to explore how old people handle health crises, aging and death. smith and van der meer concluded that creative people face aging, death and illness in a less negative way than non-creative people. the group under study included subjects between and years old. the control group had people between and years old. the control group was tested over a period of one year while the group under study was tested all in one day. three instruments were used, all following a pre-planned, time sensitive method. the instruments included the meta-contrast technique (mct) that measures anxiety and defence against anxiety by using various themes of visual images, the identification test (it) that examines the subjects’ own projections of meaning on vague images, and the creative functioning test (cft) that presents ordinary and non-threatening images. this study is an example of some of the difficulties researchers face in carrying out projects that involve an older population. several flaws were evident in their research design: a. the two groups were not comparable in age. the age span from to is too large. b. the testing period was not comparable. the group under study was tested in one day while the control group was tested over one year. c. the time-sensitive testing approach is not appropriate for this age group. the literature is rich in findings (see below) on physiological and cognitive slowing down with aging. does that mean the older person who needs more time to process information is less creative? d. the interview questions concentrated on highly stressful issues such as fear of illness and death that may have primed the responses of the participants and may have played a factor in their responses. older people, encountering stressful topics where they were required to respond within pre determined time limits, may find they have no opportunity to reflect, to come up with spontaneous answers, or time to think creatively. the approach to neuropsychological investigation described by una holden ( ) is much more applicable in situations involving older subjects. holden recommends: setting a relaxed atmosphere; making sure the tasks are suited to the participant, the situation is friendly and encouraging; giving the subjects the opportunity to succeed as much as possible; keeping the interview short and presenting questions a little at a time — an approach that is better than too much at once — and introducing interests, social skills, experience, and personal standards to be discussed at the beginning and through the interview (p. ). for her part, amabile ( ) reports that external evaluative processes of one’s creative abilities are harmful to the creative process itself. of the two studies, fisher and specht’s appear to have taken the more appropriate approach to examining how older people perceive creativity and how they use it to face life experiences. to continue the evolution of definitions of creativity, i have moved from creativity of eminent individuals to everyday creativity as a trait of ordinary people, to creativity as an expression of life, with a focus on creativity in old age. the next step is to examine creativity in old people with dementia. there are very few empirical studies on this topic and the ones found are limited mainly to single abilities such as singing, dancing or painting. the topic needs study from an interdisciplinary perspective delving into the richness and complexity of what it means to be old and creative while being physically and cognitively impaired. the next qualitative study is unique since its author’s philosophical approach to creativity and dementia fits within the topic of this study and is one of the few studies available on this topic in the literature. looking back from loss: views of the self in alzheimer’s disease by anne davis basting ( ) is based on three narratives or autobiographies as they were written by persons with dementia. davis basting does not present these autobiographies for their literary quality, but rather to point out the preservation “of selfhood in the midst of its perceived loss” (p. ). she supports her work with tom kitwood’s ( ) approach to personhood, which treats people with dementia as “whole beings” struggling to cope with their disease. davis basting finds the three authors maintaining their social identity (how others perceive us) intact and comments on the amazing self-awareness they have of the deterioration of their personal identity (our sense of who we are). davis basting’s authors are aware of their problems, they are coping with the disease as well as they can and finding ways to express themselves creatively through writing. all authors would like to leave a legacy behind that may be useful one day for others; this shows the ability to plan for the future. davis basting’s authors demonstrate qualities that are included in definitions of creativity: the ability to identify a problem and apply a solution to it, the ability to have the motivation to produce a useful product, the ability to have a vision and plan for the future with the help and recognition of the community, family and friends and of davis basting herself, who as a leader in the field sees their writings as very valuable. timeslips, a program she developed, is an innovative method of group story-telling by seniors with dementia. in the training materials for the program, she writes: creativity is: adding something new to the world, how we know ourselves, how we grow ourselves, how we connect to others ... through creative expression, we share ourselves and connect to others. creative expression is importantfor everyone, but it is even more importantfor those with dementia for whom other avenues ofself-expression can be severely limited” (p. ) davis basting’s definition covers just about all the key elements discussed so far on creativity by other scholars in the field of creativity research. however, for a definition that embraces dementia more closely, i suggest adding a few more key elements to her definition: creativity in the context of dementia adds something new and different to the world whether through intrinsic self-exploration as an individual, or sharing creative expression through interaction with others. the creative process is demonstrated through creative thinking and imagination in everyday living and may or may not result in a product. through creativity, people with dementia could (can) enjoy meaningful, satisfying and (at times) unpredictable experiences that may last for only a very short while or as long as memory allows it. why creativity and creative expression are important based on this literature review ,inquiry in the field of creativity and dementia provides some evidence that support what anecdotal observations have claimed for a long time — that when given meaningful opportunities and encouragement, seniors can express themselves creatively until they reach the advanced stages of the disease, in spite of their physical and cognitive limitations. providing an outlet for creative expression gives seniors with dementia an opportunity to be heard and to be valued. creative expression is a general term that includes visual and performing arts activities, verbal and written expression, interpersonal communication and forms of self-actualization. we know from experience that through creative expression activities we can communicate with seniors with dementia. we listen, respond and interact with them through these activities. in this way we can learn about the seniors’ past life, which may include their ethnic background, occupation, hobbies and family. we can learn to respect their world, treat them with dignity, and start to have a positive influence on their quality of life. how seniors with dementia experience everyday creativity within the aging process opportunities for engaging in creative expression are numerous and they vary from visual and performing arts such as painting, listening and making music, dancing, singing and reminiscing to activities in daily life such as cooking, dressing, planning and gardening. the main question that arises is which opportunities are appropriate when we interact with seniors with dementia and what are the environmental circumstances that affect them. the explore the main question concerning changes associated with aging and dementia i turned to a theoretical model in gerontology that combined the biological, psychological and social aspects of aging. this theoretical model helped “explain why we do what we do and may alert us to some of the currently unforeseen implications of unselfconscious assumptions about age. it may also provide conceptual tools to interpret complex events and critically evaluate the current state of aging.” (biggs, lowenstein & hendricks, ). age-related changes in physiological, cognitive and social aspects take place in several domains. the interrelationship of the changes is supported by numerous researchers (davis basting , agronin, ; dannifer & perlinutter, ; schneider & pichora-fuller, ; staudinger, ; stuart-hamilton, ; teague, mcghee, rosenthal and kearns, ). for example, staudinger states that “to understand human life, we need to study thinking, wanting, feeling, and doing conjointly ... in fact, it may be exactly this combination of an elementaristic and holistic approach that makes room for new insights into psychological functioning” (p. ). biological, psychological and social aspects of aging “do not occur independently of each other ... changes in the physical state of the body (and the brain in particular) can have profound effects upon psychological functioning”, as stuart-hamilton ( , p. ) states in his publication, the psychology ofageing. stuart-hamilton is a professor of psychology at the university college in worcester in the uk. staudinger and davis basting focus on changes that take place in each domain that affects creative expression abilities and opportunities for engaging in creative expression in the older population from normal aging through to aging persons with dementia. this population of older people, from the age of to years and over, is diverse in age, health and abilities. growing older and experiencing physiological decline does not necessarily result in diseases and/or in cognitive and physical impairment that stem from a medical condition. it is more appropriate to talk in terms of mild decline in normal aging rather than in terms of significant impairments that can be diagnosed as cognitive disorder (agronin, , osterweil, brummel-smith, beck, ). researchers like schneider and piehora-fuller ( ) and lindenberger and baltes ( ) indicate that some deterioration in memory functioning such as inattention, processing speed and accuracy may occur, but the overall intellectual function is intact. to support a biopsychosocial model, we draw information from existing literature relevant to aging and dementia with a specific focus on its relevance to creative expression activities. case studies from the literature will be drawn for support wherever possible. however, due to the lack of appropriate empirical studies that make specific connection between practical manifestations of creative expression, dementia and the biopsychosocial model, i will turn to the closest qualitative studies of researchers like policastro and gardner ( ). both policastro and gardner came to the conclusion that psychometric standardized testing failed to fit everybody’s abilities, especially those of exceptional creative individuals. policastro and gardner also struggle with the difficulty of how to approach creativity studies. although this explanation could belong at the beginning of this paper, it has its special place in this section. because of its relevance to this question, i will rely mainly on their work. policatsto and gardner developed a new cumulative approach to creativity study, which was based on a progression of steps ranging from phenomeno logy, the study of known creative individuals, to a search for emerging patterns in comparison with other similar individuals. they accumulated a large database that allowed more patterns to emerge and contributed to generalization and explanation for deviations. age related changes do not have to be associated with cognitive and physiological impairments. there are always older individuals who enjoy good health until very late in life, who use everyday creativity to adapt to the changes in their lives. a good example of creative adaptation is the well-known choreographer, twyla tharp, ( ) age , who appropriately named her autobiography, the creative habit: learn it and use itfor l/è. twyla tharp represents what is known in the gerontology literature as ‘successful aging’ (fisher & specht, ). gene cohen’s ( ) book, the creative age, is full of examples of people he met during his years’ working with elderly patients as well as a rich selection of stories about well-known seniors from mother teresa, who received a nobel peace prize at age , to jacques cousteau, the french oceanographer, who popularized the study of the ocean environment and worked until his death at age . stories about such exceptional individuals are the data usually collected in qualitative research that may also promote understanding of everyday creativity (policastro & gardner, ). although not tested in any systematic way, personal anecdotal stories, which are similar to cohen’s qualitative descriptions, can help delineate many of the questions that propelled this research topic on creativity and dementia. ignoring this practical experience will only mask a world that exists in dementia care and may stifle reality for thousands of persons who could benefit from being acknowledged while their cases only later contribute towards more rigorous scientific research. the anecdotal examples help to identify a problem, and build towards a theory that needs to be tested. however, i realize they may simply present fascinating snapshots, moments in time rather than the whole picture. their use is not intended to provide empirical evidence except as individual cases, which limits their generalization. although most of us experience aging, it is still shrouded in scientific mystery. most people refer to aging from a biological perspective. dr. gene cohen, professor of health care sciences and of psychiatry at the george washington university, explains the process of aging as “a simple case of wear and tear ... an internal erosion that weakens cells, organs, and organ systems from head to toe, limiting their functioning” (p. ). stuart-hamilton ( ) lists several theories of aging from “programmed theory of ageing (i.e. that cell death is in effect planned)” to an “autoimmune theory of ageing ... that ageing may be attributable to faults in the body’s immune system” (p. ). defining aging is almost as difficult as defining creativity. aging is a word that describes a process that takes place in several domains. as in creativity, aging does not have “one single reliable measure” (stuart-hamilton, ). for most people aging is defined by its social construct, which is marked by retirement and the so-called typical behavior that a specific society expects of its aging people (baltes and reese, ). “dementia refers to the development of multiple cognitive or intellectual deficits that involve memory impairment of new or previously learned information and one or more of the following disturbances: . aphasia, or language disturbances. . apraxia, or impairment in carrying out skilled motor activities despite intact motor function. . agnosia, or deficits in recognizing familiar persons or objects despite intact sensory function. . executive dysfunction, or impairment in planning, initiating, organizing, and abstract reasoning” (agronin, , p. - ; the diagnostic and statistical manual of mental disorders, fourth edition, text revision (dsm iv tr). dementia is divided into seven subtypes that include over brain diseases. the seven subtypes are: . alzheimer’s type, . vascular dementia, . viral dementia, head trauma, parkinson’s disease, huntington disease, pick disease, creutzfeldt-jacob disease, . due to a general medical condition, . due to substance abuse, . due to multiple etiologies, . unspecified dementia. of the dementia diseases, alzheimer’s is the most common type, accounting for % to % of all dementias, while vascular dementia accounts for more than %. causes for alzheimer’s disease are still being investigated. recent research points towards two contributing factors to the disease: “extra neuronal deposition of i—amyloid and intraneuronal destabilizing of tau protein” causing plaque formation, which destroys neurons in the brain and induces inflammation that causes further damage to the cells. damage to the areas of the entorhinal cortex and the hippocampus causes impairments to short-term memory in early symptoms of the disease. (agronin, , p. ). agronin, director of mental health services, at miami jewish home and hospital for the aged, reports that some people may have more than one type of dementia. it is important to diagnose the type of dementia, since it may be of a reversible type. risks factors are associated with “advancing age, menopause, brain injury, lower education, and the presence of the apolipoprotein e (apoe ) genetic allele” (p. ). physiological changes associated with aging and dementia physiological age-related changes relevant to creative expression abilities take place in the nervous, sensory, cardiovascular, respiratory, skeletal, and muscular systems. all systems are interconnected and when one system fails, it affects the other systems as well (teague,, mcghee, rosenthal and kearns, ). the nervous system and the sensory processes in normal aging play a role in regulating and integrating information and in internal communication (deck & asmundson, ). the nervous system is divided into the central (cns) and peripheral (pns) nervous systems. “the cns consists of the brain and the spinal cord, while the pns consists of the neurons connecting the cns to the rest of the body” (stuart-hamilton, , p. ’ ) an age-related decrease in blood flow to the braift and to the nervous system may contribute to the following changes: a) “tremors, slowed reaction time, short-term memory deficits, personality changes and depression” (dudek, , p. ). “reaction times become slower and the velocity of nerve conduction slows by to % by age ” (spirduso, , p. ), b) slowing in speed of information transmission, c) reduced functioning of autonomic nervous system, d) sleep-related changes, e) aging eye - “the lens undergoes a yellowing and, in some cases, lens opacity occurs (cataracts). the iris does not open as much as a younger person (heath, ). loss in visual acuity, “ability to see in low light”, “distinguish color intensities and depth perception” (dudek, , p. ), f) loss of hearing - “mechanical and neurological changes” impact the auditory system and lead to a “decrease in sound discrimination” (heath, ), g) loss of balance, h) olfaction changes - lead to a decreased ability to smell, i) decrease in taste sensation (rawson, ). to express ourselves creatively we rely on the senses that allow us to see, hear, taste, smell and touch. through these senses we receive information from the world around us; we then process the information in the brain in combination with our accumulated knowledge, based on memory and life experience (coren, ward & enns, ). if our nervous system is impaired, so is our communication with the world outside. it will take longer to process information and longer to react to it. missed information may cause confusion and decreased self-esteem; it may contribute toself-imposed isolation, loneliness, mood swings, anxiety, anger and aggravation (una holden, ). it is important to note that creative expression abilities may continue to function internally in spite of physical limitations. however, those abilities need the opportunity to be expressed, recognized, validated and appreciated. if the opportunities are not provided, those physical limitations may become mental problems, which in turn may result in further physical deterioration. this cycle needs to be broken in order to provide opportunities for healing of the mind and spirit and for creativity to continue to survive (tiki, ).davis basting’s definition of creativity underscores how important creative expression can be for seniors with dementia if they are to continue to maintain cognitive and social contact with others. age-related visual impairment can be most noticeable when dedicated artists experience changes in the style of their artwork late in their career. the normal aging population, who may not be engaged in the visual arts, may never notice some changes in their visual abilities. following the rationale of policastro and gardner ( ) and their cumulative approach to research in creativity, we may learn about the exceptional abilities of well known artists and through comparative studies reach an understanding of what is normative and what is not and apply it to people with everyday creativity. there is a long standing debate in the art world as to what constitutes a change in artistic style — is it due to an artistic decision, made from free choice or is the change due to physical, cognitive and perceptual limitations? the debate over de kooning’s artwork in later life is a good example. after being diagnosed with alzheimer’s, he continued to produce a large body of work that was exhibited and analyzed with some of these questions in mind. perhaps, such artists were aware of their limitations and found satisfactory ways of adapting to them. we have some clarification that artists suffer from visual impairment in marmor and ravin’s book, the eye of the artist ( ). in it, monet is quoted as commenting on his painting of water lilies: ifi regained my sense of color in the large canvases i’ve just shown you, it is because i have adapted my working methods to my eyesight and because most of the time i have laid the color down haphazardly, on the one hand trusting solely to the labels on my tubes ofpaint and, on the other hand, to force of habit, to the way in which i have always laid out my materials on my palette. (p. ) monet suffered from cataracts, where the “lens becomes so sufficiently opaque that vision is compromised” (page - ). cataracts also contribute to a “progressively more yellow world” (marmor & ravin, , p. - ) and, as a result, may alter the colors of the art produced. as marmor & ravin state, “what cannot be seen cannot be matched and therefore cannot be made” (p. ). other well-known artists may have suffered from visual impairment, including el greco from astigmatism, when “images are focused more strongly in one direction than another” (p. ), edgar degas from blindness, and georgia o’keeffe from blurred vision. o’keefe suffered from macular “degeneration of the central part of the retina” which can cause “images (to become) hazy, fragmented and distorted” (p. ). regardless of the other types of impairment, presbyopia, an optical age-related problem that affects nearly everyone, can change how we see objects and how we draw them. in presbyopia, the “lens becomes less elastic, and, as a result, we lose the ability to focus over the whole range from infinity to near” (marmor & ravin, p. - ). another age-related impairment is the diminishing ability to pay attention to fine details and a “decline in contrast sensitivity” (p. ). as the pupil decreases in size, so does the amount of light absorbed by the eye, decreasing the ability to distinguish detailed images against their background (p. ). older people may experience higher threshold sensitivities to “light and movement and color discrimination” (coren, ward & enns, ). understanding aged-related visual impairment has significant implications for how art topics, art supplies, educational materials and studio arrangements should be considered when presented to older people. more specifically, visual information may need to be less detailed, high in contrast, appropriately task lighted, located at eye level, whether for a sitting or standing person, and presented at an appropriate distance from the eye. other solutions may be as simple as providing a pair of glasses, or medical intervention. adults over the age of run the risk of developing dementia-related impairments in addition to the normal age-relatcd decrease in abilities. a person with dementia may have the mechanism of seeing intact but suffer impairment to the perception system, which reduces the person’s ability to recognize the objects they see. to make matters worse, if parts of the diseased brain affect memory, they also affect their ability to recognize objects from memory. this explains why some seniors with dementia cannot identify objects in front of them and have difficulty drawing them, or — more amazingly, they are able to draw the objects but fail to recognize what they have just drawn. this phenomena is described in margaret livingstone’s book, vision and art ( ). livingstone is a professor of neurobiology at harvard medical school. she quotes a stroke patient saying to his doctor: “i can see the eyes, nose, and mouth quite clearly, but they just don’t add up ...“ (p. ). stroke patients may exhibit similar symptoms to dementia, but unlike people with dementia, their condition may improve as time passes. strokes also account for vascular dementia, the second most common form of dementia (agronin, ). in addition to object and color identification, people with dementia may experience difficulties in depth perception. our eyes allow us to see in two dimensions but the brain must convert the information into three dimensions. the conversion is automatic and is “happening well before conscious perception” (p. ). any disruption to the visual system in the brain diminishes the ability of a person with dementia to recognize spatial depth. in my work with seniors, i have seen seniors who did not select the colors of the objects they were looking at. for instance, one senior painted a tree all in one color, green, although a large variety of colors were available. was it a deliberate decision not to bother changing the pens to reproduce the correct color of the object? was it an artistic choice? was it the loss of color recognition that caused this behaviour? perhaps it was a mental condition or the age-related decrease in attention to details. in spite of reduced abilities, creativity finds multiple ways through which it can be expressed. although the tree was drawn completely in green, the senior explained its shape and location on the drawing paper by stating that the apples were still green and so was the foliage that covered everything almost to the ground. this verbal explanation, which went along with the visual image, made the whole session very special and meaningful to the artist/senior with dementia and to the other participants who were amused by it. in another situation a senior with moderate dementia, who had been a well-known artist in the past, could paint richly colored pictures in an abstract style, but could not reproduce the objects displayed in front of her. still, her need to stay engaged with the arts was fulfilled. was she aware of her impairment? did she consciously adjust her style of painting? did she really see in her mind what she was drawing? although she had lost her ability to recognize familiar objects and project them on to paper as she had in the past, she still maintained her technical ability to mix paints, select the right brush for the right task, hold the brush and apply the color in the most interesting and tasteful way. although her artistic expression was affected by the dementia, her language abilities stayed almost intact. in searching for an explanation, gardner ( ) is the only one i found who makes the connection between artistic abilities and language and how they are manifested. gardner reports the claims of other researchers who had similar experiences, although there is little evidence of more research in this direction. in his chapter on the breakdown of the mind, gardner describes this interesting phenomena: • .painters with right-hemisphere disease — whose language has retained unaffected — often exhibit bizarre patterns in their paintings: they may neglect the left side of the canvas, they may distort the external forms of objects, or they may portray emotionally bizarre or even repulsive subject matter. apparently painting and linguistic capabilities can exist independently of one another. (p. ) although the changes to the artwork may result in bizarre images, the main idea, suggested in the new definition of creativity and dementia i propose, is to continue to encourage creative expression as long as possible. according to davis basting, these bizarre images may be the only avenue left for self- expression and through it for connections to others. hearing impairment affects % of all people over the age of , and about % of people over the age of (coren, ward & enns, ). hearing loss may prevent a person from understanding speech (p. ). a decrease in verbal communication may have a profound impact on the elderly. it may increase their feeling of isolation, and can even “result in psychiatric disturbances ... delusional thinking” (teague et al., ). this observation is also supported by weinstein ( ): “untreated, hearing loss has significant social, cognitive, and emotional consequences” (p. ). in hearing less the elderly are less exposed to external stimuli that could activate their memory and prompt the internal creative process. for example, aldridge ( ), a professor of clinical research in the faculty of medicine at the university of witten herdecke in germany, found that music therapy programs for seniors with dementia activates their memories. hearing loss should not affect creative abilities that are not sound-based. “fortunately, a variety of interventions and technologies are available to help older people overcome these communicative and psychological effects” (p. ). in addition to hearing loss, the elderly run the risk of increased imbalance due to age-related changes to the inner ear. this change may contribute to “dizziness, instability, and falls” (p. ). internal creative processes benefit from external stimuli, which in turn give birth to new ideas, renewed energy to explore and stay engaged with the world around us. in the case of hearing and creative expression abilities, we refer most often to music, speech, and the sounds we hear from the world around us, whether it is a barking dog or traffic noise. the question arises: what may the impact be for a person with dementia whose hearing impairment is not detected, or for whom hearing aids are not used all the time? the impact of hearing loss on creative expression abilities or the opportunities to be engaged in them depends very much on the person with dementia. some people are affected less than others and the sounds of music may be more important to one person and not so important to another. the literature is rich in studies of people with dementia and their positive response to music, whether actively participating in music activity or becoming less agitated (aldridge, ; brown, gotell, & ekman, ; bruscia, ; carruth, ; chavin, ; gotell, brown, & ekman, ; johnson, cotman, tasaki, & shaw, ; kneafsey, ; mathews, clair, & kosloski, ; olderog-millard & smith, ; sambandham & schirm, ). amy horowitz, m.s.w, in a peer reviewed article depression and vision and hearing impairments in later life ( , p. ) found that “hearing-impaired older adults are approximately twice as likely as their nonimpaired counterparts to have clinically significant depressive symptoms” and that these symptoms of “sadness, loss of interest and/or pleasure, feelings of worthlessness or inappropriate guilt, loss of appetite, sleep disturbances, psychomotor agitation or retardation, fatigue or loss of energy, trouble thinking or concentrating, and thoughts of death. hearing impairment may limit the selection of possible expression activities but adjustments can be made so that hearing impaired seniors with dementia can enjoy related creative activities. in addition to behavioural modification, listening to familiar music is another form of auditory stimulation that is beneficial in autobiographical memory recall (foster & valentine, ). recalled memory may provide opportunities for story telling, reminiscing and socializing — to be heard, to express and feel alive. taste and smell are quite noticeable in age-related changes. “odor sensitivity is greatly diminished, although the reduction is not uniform across all stimuli or individuals” (cain & stevens, , in coren, ward & enns, . p. ) in a test done by schiffiman and pasternak ( ), it was noted that elderly subjects could best distinguish fruity odors compared with other types of odors. in a test done by stevens, cain, and demarque ( ), it was found that elderly people had a shorter span of odor memory compared with younger adults. in addition to smell reduction, the ability to taste is reduced as well. schiffman ( ) reports that younger subjects are twice as accurate as the elderly in recognizing common foods in pureed form. also, while seniors show a reduced sensitivity to touch, their sensitivity to pain remains (coren et al., ). although taste, smell and touch impairments are not considered as profound as impairments to seeing and hearing, they yet rob the older adults from experiencing fuily the world around them in comparison with a younger population. it is important to note that older people are at risk when taste, smell and touch are impaired, since they may be exposed to toxic substances, overlook important ingredients in their diet (coren et al., ) or touch dangerous surfaces, which are too hot, cold or sharp. the literature revealed that impairments to taste, smell and touch reduce the sensitivity to external stimuli that might otherwise provide access to recall memories. as a consequence, a facilitator for creative expression activities needs to take into consideration that older adults, especially seniors with dementia, may need enhanced flavors, especially in salt and sugar (coren, ward & enns, ), while engaged in creative cooking and baking. a facilitator needs to be aware of food products that may not evoke any reaction since they may appear tasteless to the senior. exposing seniors to smells may remain unnoticed, unless the facilitator focuses on fruity smells. in a study by larsson ( ) it was found that women perform better in olfactory tasks than do men. in addition, pause, ferstl, and fehm-wolfsdorf ( ) found that individuals with a high emotional level would excel in olfactory ability. these findings are important in understanding gender differences, personality traits and the need to accommodate creative expression activities that are meaningful by tapping into the strongest abilities still left to work with. in selecting objects to be touched by seniors, the facilitator may need to be aware that feather-like touches may not be noticeable and that extreme temperature and sharpness would need to be monitored for safety reasons. the cardiovascular system is based on the heart and blood vessels. cardiovascular disease is common in old age and it increases as age progresses. at age , about % of the population have cardiovascular diseases and at age , the percentage rises to around % (fahiander, wahlin, fastbom, grut, forsell and hill., ). in addition to fatigue and hypertension, which is not an inevitable consequence of aging (schulman & gerstenblith, ), a study by fahlander et al. ( ) found a relationship between signs of cardiovascular deficiency and cognitive performance in normal old age, which is “seen most clearly” (p. ) in vascular dementia, especially in episodic memory and visual and spatial skills. episodic memory is defined as “specific episodes in one’s life” (reisberg, , p. a ). we need to take into account the risk factors in increased physical activity and tailor the activities to the elderly, especially for cardiac patients (schulman & gerstenblith, ). the intensity level of physical activity needs to be taken into consideration, in consultation with the seniors’ healthcare providers. although these activities should be taken with care, “regular physical activity and exercise can also assist older adults in enhancing their quality of life, improving their capacity for work and recreation, and altering their rate of decline in functional status” (frontera & evans, ). however, dementia does produce a decline over time in the seniors’ functional status and with it the opportunities to engage in various movement activities, such as dancing. if a senior with dementia also suffers from congestive heart failure, that condition may restrict the level of activity recommended for that person. due to the direct relationship between cardiovascular deficiency and cognitive performance, high-risk individuals may need to be identified prior to an activity to make sure the activity is appropriate for their energy level and cognitive ability. creative expression activities may include physical work such as dancing, clapping, using drums, acting, painting large images that may require standing, gardening and planting and so on. the respiratory system “provides oxygen to all cells in the body as well as serving to excrete carbon dioxide, a waste product of metabolism” (deck, , p. ). any disturbances to the oxygen supply may cause heart problems and pneumonia, which in turn reduce the level of activity of the elderly. care should be given at any age and at any place to protect against environmental toxins. elderly people run the risk of emphysema and pneumonia. they are also very vulnerable to air pollutants (spence, ). respiratory problems may restrict the senior from taking part in some of the creative expression activities. art products should be screened for their toxicity and for their use; they may pose problems if taken into the mouth. creative abilities are not necessarily affected unless the senior is too frail to take part in any activity. the skeletal system supports “all the soft tissues of the body, it protects internal organs, it stores vital minerals, and it plays an integral role in the formation of blood cells.” (deck, , p. ). changes to this system have a “profound effect on the life style of the elderly” (p. ). osteoporosis is a “skeletal disease characterized by low bone mass and microarchitectural deterioration of bone tissue, with consequent increase in bone fragility and susceptibility to fracture”, which are common in the “hip, spine and wrist” (kendler, , p. ). symptoms of impairment to the skeletal system and osteoporosis contribute to stiffjoints, pain, restricted movements, frailty and deformity. other impairments are due to the deterioration of cartilage, changes to the spine, and rheumatoid arthritis. although impairments to the skeletal system are not connected to cognitive abilities or creative abilities, they have the potential to restrict mobility and cause significant pain that would prevent a person from fully enjoying creative expression activities. a combination of carefully planned programs and appropriate therapeutic environments will contribute to a safer environment. some thought is needed to address the kind of art supplies, location of the art supplies in relation to the artist, drawing position, whether sitting or standing. many frail elderly people have difficulty holding brushes, standing up at their easels, bending, raising their anns and lifting. elderly people fall more often and are more likely to break their fragile bones (newton, ). on many occasions, i adjusted easels, improvised work surfaces, suggested painting with fingers instead of holding a brush, and ripping paper instead of using scissors to avoid putting pressure on finger joints. this system is closely associated with the skeletal system and is important to the “functional ability and lifestyle of the elderly individual” (deck, , p. ; spence, ; heath, ). physical activity is necessary for successful aging and can bring “physiological and psychological benefits” (p. ). aging contributes to loss of muscle mass; % of muscle strength is lost by the age of ; this loss can also be attributed to “disuse” or inactivity and which contributes to significant limitations in flexibility (heath, ). deck ( ) comments that “boredom, inactivity, and expectations of illness contribute substantially to the decline of physical capacity in elderly individuals” (p. ). impairments to the muscular system may increase the resistance of seniors to participate in creative expression activity with more physical involvement. working with seniors with dementia, the author noticed how pain associated with muscular and skeletal impairments discourages older people from wanting to move. combined with symptoms of dementia, physical movement would keep these seniors from participating in creative expression activities. cognitive changes associated with aging and dementia to understand “how the brain works, what is involved in various mental processes, and how the brain makes these achievements and processes possible” (reisberg, , p. ), we need to combine knowledge from cognitive psychology and cognitive neuroscience. however, our focus here is on intellectual functioning and how it manifests itself in cognitive functioning or, more specifically, in creative expression abilities. neuroscience will be mentioned briefly only to clarify how it relates to dementia and the parts of the brain responsible for impaired behaviour in an attempt to identifs’ why certain behaviour and abilities are the way they are. cognitive neuroscience is associated with the medical model of care based on illness. it is criticized by those who wish to dissociate their work from it and focus on the person inside the disease (kitwood, ). but no matter what approach is adopted in providing care, the process needs to be inclusive, comprehensive and realistic to respond to seniors with dementia and their many needs. to address the issue of cognition and creative expression abilities we need to delve into the strong relationship that exists between the cognitive system (intellectual functioning) and the perceptual system: “the conscious experience of objects and object relationships” (coren, ward & enns, , p. ). since creative expression touches on both systems of cognitive functions and perception, we will concentrate on an in-depth review chapter by schneider and pichora-fuller ( ). in the literature on cognition and perception in aging, this study is remarkable for its depth, breadth and comprehensiveness. it supports our need to tie together several fields in understanding how elderly people react to external stimuli, and then express themselves creatively. in explaining the processes that contribute to learning, knowing and expressing, schneider and pichora—fuller ( ) write: the coexistence of these two kinds ofage-related changes raises important questions about the relationship between early and later stages in information processing, that is, between perceptual and cognitive processes, which have now been shown to have “a powerful inter-systemic connection” (baltes & lindenberger, , p. ). in this chapter, we argue that perception and cognition must be considered as parts ofan integrated system fwe are to understand how they are affected by age. (p. ) as reviewed by schneider and pichora-fuller, lindenberger and baltes ( ) found a strong correlation between changes in hearing and the “speed of processing in the older adult” (p. ). schneider and pichora-fuller concluded that “anatomical and physiological changes would have multiple consequences for perceptual function” (p. ) the main concept of their theory as it applies to the link between cognition and perception is explained very clearly in the following: “... age leads to sensory organ deterioration that affects the kind and quality of information delivered by the perceptual system to the cognitive system. ultimately, a reduction in both the quality and quantity of input would result in cognitive deterioration due to atrophy. “ (p. ) in their conclusion, schneider and pichora-fuller recognize the importance of testing the perceptual status when doing cognitive research with the elderly. by doing so, the researcher can define the perceptual loss and its effects on cognitive abilities. schneider and pichora-fuller and other researchers found evidence of degeneration in normal aging. it affected auditory functions: in detecting signals in noise; visual acuity: the ability of the eye to resolve details (coren et al., ) and contrast sensitivity: the difference between light and dark (coren et al., ) occurring in normal aging. the following description aims to connect the location of dementia in the brain, as it affects brain functions, with cognitive and perceptual impairments that determine the level of creative expression abilities. the information on neurological and cognitive impairment is based in large part on a recent book, dementia: practical guides in psychiatry ( ) by dr. marc agronin. agronin brings together issues that pertain to dementia disorders and dementia care. he successfully combines various approaches to dementia care, including the kitwood approach, which emphasizes the person inside the medical condition. he responds to the mounting criticism from gerontologists and social workers regarding the way seniors with dementia were treated and still are to a large degree. recent neurological research findings from ropper and adams ( ) and nutt & weizman ( ) are described in agronin’s publication: . damage to the frontal lobe can result in: impaired executive functioning, impaired immediate memory, slowed cognitive processing, slowed activity, poor concentration and attention, impairments in judgment, insight and behavioral control, personality changes, apathy, preservation of words, sounds or behaviors, disinhibited reflexes, impulsivity, aphasia, language disturbances, and impaired task-follow- through (agronin, ). impaired attention translates into decreased alertness, being distracted, not being able to separate relevant from irrelevant information, not being able to handle multiple sources of information at the same time (mcdowd & shaw, ). anatomical changes in the frontal lobe due to dementia can impair the processing of information and the ability to react to it. interestingly, the same damage may reduce barriers to behaviour control that result in encouraging artistic expression. dr. bruce miller, of the department of neurology and psychiatry, university of california at san francisco school of medicine, discovered with his colleagues, cummings, mishkin, boone, prince and ponton ( ) and ponton, benson, cummings and mean ( ), that patients with frontotemporal dementia (ftd) “developed new artistic skills” and “became accomplished painters after the appearance of frontotemporal dementia. three patients in a study group improved their skills during the onset of the disease and through the middle stages of it. one patient in particular, with no interest in the visual arts in the past, continued to paint for about years from the time of the diagnosis with increased “precision and detail”. he used bright colours and painted his first paintings fast, slowing later and paying more attention to detail. as his disease progressed he started to draw “bizarre doll-like figures.” these figures became an important key in examining artwork done by seniors with dementia. gardner ( ) also brings up a similar description of artwork done by brain-damaged patients. . damage to the occipital lobe may cause: visual agnosias, deficits in recognizing people and objects, reading impairments, cuts in the visual field, illusions and hallucinations of shapes and colors, visual inattention (agronin, ). damage to the occipital lobe reduces the ability to process incoming information and, therefore, responses to the external stimuli may not always be appropriate. however, illusions and hallucinations may become opportunities for creative expression, when the person with dementia cooperates and the facilitator is aware of the situation. . damage to the left hemisphere of the panetal lobe, the dominant side, may cause: impairment in reading and writing, right—left confusion, impaired tactile recognition. damage to this part of the brain will reduce the ability to respond to stimulus through touch, poem writing, story reading and writing, and instructions that use left-right orientation. . damage to the right hemisphere of the parietal lobe, the nondominant side, may cause: visuospatial and visuoconstructional impairment and neglect of the left side. these impairments more profoundly affect the ability for expression in visual arts. . damage to the temporal lobe may cause: impaired memory and hearing, changes to emotional and behavioral expression, apathy, and oral exploratory behaviors. summary researchers like gardner, miller, and schneider and pichora-fuller provide the groundwork for neurological understanding that translates into practical information about what to expect when interacting with seniors with dementia who engage in creative expression activities. dr. miller’s patients were diagnosed using magnetic resonance imaging (mr ) to veri y the degree of atrophy in the brain and the location of the damage. it would be beneficial if all dementia patients had this procedure, however, it is costly and most dementia patients do not undergo such procedures. in the absence of this diagnostic tool, artwork could become an inexpensive substitute with the potential of explaining some behaviours. social cognition, aging and dementia social cognition in aging is defined by self-identity, social interaction and social perception (hess, & blanchard-fields, ). ha.zan ( ) describes aging as: knowledge about ageing is peculiar; alongside matters of lfe and death it embraces notions about dependency and autonomy, body and soul, and paradoxes emanating from irreconcilable tensions between images of the old, their own will and desires, and the facilities offered to them. (p. ) hazan sees people in old age trapped socially by the language of separation, by a culture that separates them, by their image as perceived by the rest of society, and by their own self-image. further, he says that this separation is “a form of social segregation which defines the aged as non-humans and humans as non-aged ... detached from their previous lives and from social frameworks of the non-aged” (p. ). he also criticizes the notion that older people need to adapt and “conform to the demands of society” (p. ). the whole socio-cultural construct seems to be afflicted by fear and anxiety of old age, where old age is perceived as a social problem that needs to be resolved. hazan sees the concept of death as the main divider between “those on its verge and those desperate to avoid it” (p. ). for him, words such as “aged, old, older person, senior citizens, elders, old age pensioners — all serve to stigmatize the aged” (p. ). the recent popular concept of ‘successful aging’ implies that older people need to be instructed on how to live their lives to the fullest. yet society dictates when a person should retire from the work force. entering retirement is based on a bureaucratic decision, which is driven by economic reasons that favor younger people. the decision to retire affects older people economically, “their relationship to others, their self image” (p. ). overnight, retired people lose their status as viable and contributing members of society. aging becomes equivalent to illness, dependency, powerlessness, dehumanization, eventually leading to institutionalization away from all that was familiar (hazan, ). treating older people in a discriminatory way was named “ageism” (cohen, , levy, ; palmore, ). cohen ( ) quotes butler ( ) as saying: ageism can be seen as a process ofsystematic stereotyping ofand discrimination against people because they are old, just as racism and sexism accomplish this with skin color and gender. old people are categorized as senile, rigid in thought and manner, old- fashioned in morality and skills.... ageism allows the younger generation to see older people as different from themselves; thus they subtly cease to identfj’ with their elders as human beings. (p. ) creative expression abilities are based most strongly on “the interface between personality and intelligence” (staudinger et al., ). those creative traits may or may not be expressed through social interaction and a quest for self-identity. older people may refrain from expressing themselves if the society they live in refuses to support them emotionally. according to hazan ( ) older people suffer particularly from stereotypes that are socially constructed when they are treated as a homogeneous group without regard to individual differences. staudinger ( ) stresses the importance of the individual and their life experiences. these individuals have a past and make plans for the future. in her research, which is supported by lindenberger and baltes ( ), staudinger found that when older adults are engaged in life review and life planning, they “do not show the usual declines identified in cognitive functioning of the mechanic type ... rather, stability and sometimes increases in performances are observed” (p. ). hazan comments on how society views aging and creativity, explaining the stereotypes that brand ordinary old people as “incapable of creativity, of making progress, of starting afresh” (p. ). he continues “only in art and the domain of the spirit are they licensed to continue to be creative” (p. ). ryan, hummert and boich ( ) share the opinion of hazan and staudinger that older people become stereotyped as incompetent and dependent (p. ). in ryan introduced the communication predicament of aging, which demonstrated how caregivers change their verbal and non-verbal communication with an elderly person. this model presents several stages from the first encounter with an older person to changes in speech and behaviour of a patronizing nature, which reinforces stereotyping and causes the older person to avoid interaction. to support this cycle, smith & van der meer, in runco and richards ( ), point out that “older people, because of negative social stereotypes about aging, often become isolated from their own emotions and filled with doubts about themselves, all of this being detrimental to creative functioning” (p. ). mcmullin and marshall ( ) suggest that age discrimination is widespread in western societies and that it “occurs within families and households, government agencies, healthcare systems and wage labor markets” (p. ). the relevant finding is that older people are “denied resources and opportunities that others enjoy” (bytheway, , p. ). it seems that these research findings of western social attitudes towards normal aging become more accentuated with older people, who are sick with dementia. aronson ( ) makes it very clear that older people, who become sick and move from being independent and in relatively good health to total dependency, are at the mercy of others for care. older people with attributes that signal their potential dependency —for example, being ill or disabled, poor, or female — are especially exposed to these oppressive practices and are, coincidentally, those most likely to enter the orbit of long-term care, thus, ofsocial workers. ... these organizations and the cumulative practices ofservice providers within them play critical parts in both distributing resources and in shaping images and vocabularies about older citizens ‘ entitlements and the signflcance of their needs. (p. ) aronson joins the voices of other researchers in the social sciences (corley, ; cox & parsons, ; fulimer, shenk and eastwood, ; hancock, ; hooeyman & gonyea, ; kitwood, ; kitwood, ; neysmith, ; sabat & harre, ) who view their work with older people from a postmodern and feminist perspective that focuses on the social construct and issues of empowerment. this viewpoint opens the door to criticism of some practices in dementia care. as tilki ( ) observes: the damage caused by not enabling older people to occupy their time in a meaningful, enjoyable and challenging way was dramatically underestimated (goodwin, ). recreation according to goodwin was not a luxury, but a starting pointfor excitement, meaningful diversion, adaptation and creative activity. crump ( ) went so far as to suggest that the absence of meaningful activity could be interpreted as abuse. (p. ) the following is a conceptual framework (fig. ) that illustrates how therapeutic environments may bring positive changes in behaviour and self-image when the medical model of treating seniors with dementia is enhanced with the person-centred model as identified in the field of gerontology. although the reduced abilities are a fact, responsive environments may help alleviate feelings of isolation and breakdown in communication. l from a biomedical model to a person-centred model within the context of creative expression activities • understand patterns of behaviour and the causes for problematic a behaviour to reduces anger and agitation. provide opportunities for decision-makmg as long as possible, however small: art projects, meal preparation, moving objects, collecting things. therapeutic environment • positive change in behaviour • promotes independence preservation of the self and dignity • improves socialization and communication. figure : the conceptual framework of the person-centered model versus medical model ‘jr is it an opportunity opportunity person-centred model supporting and adjusting to gradual deficits • release of inhibition may encourage creative abilities • long-term memory may stay intact. opportunity for: life review, reminiscing & reconnecting with loved ones • use of non-verbal activities: music- making and listening, art-making and viewing, use of tactile activities. encourage seniors to relive times still remembered. f’ • reduced memory & emotional control • loss of short-term memory • reduced speech and language control • loss of time awareness • free movement indoor & outdoor to maintain muscle strength as long as possible • provide meaningful activities and spots of interest along the wandering routes. • continue to work with remaining abilities, assist and support as needed. -i - • restrained with wheelchairs, geriatric chair & bed rails to control perceived problematic behaviour leads to loss of muscle tone • wandering • reduced range of movements • loss of reasoning leads to loss of the right to control personal life, to frustration, agitation, & problematic behaviour non-responsive environment • institutional feel contributes to confusion, agitation, isolation, breakdown in communication. i chapter iii: methods qualitative research manning, algozzine and antonak ( ) define qualitative research as: “inquiry designed to discover meaning by intensively studying representative cases in natural settings using analytical approaches” (p. ). john creswell ( ) explains that in qualitative research: researchers interact with those they study, whether this interaction assumes the form of living with or observing informants over a prolonged period of time, or actual collaboration. in short, the researcher tries to minimize the distance between him- or herselfand those being researched. (p. ) according to creswell, key issues in qualitative research are: a) the admission and recognition of the researcher’s biases that are embedded in his or her woridview and life experiences, b) the qualitative researcher waits for categories to emerge from the process of inquiry that may lead to patterns or theories, c) qualitative researchers take the risk of including possible ambiguity in their research with unknown variables. according to roger grainger ( ), qualitative research “indicates such a wide field of enquiry within a single project, it involves a great deal of organization and the ability to orchestrate its effects so as to present its conclusions as powerfully and convincingly as possible” (p. ). he also sees the qualitative research role in describing situations that are difficult or even impossible to measure. for example “things that are concerned with the quality of human relationships and what happens between people. it concerns itself primarily with investigating how things happen rather than trying to be scientifically accurate about why they do” (p. ). selecting qualitative inquiry the decision to use qualitative inquiry was made deliberately to focus on detailed descriptions and address research questions that allow for new understandings rich in information. as springgay, irwin and wilson kind ( ) noted in their essay: it is often an anxious life, where the a/r/tographer is unable to come to conclusions or to settle into a linear pattern of inquiry. instead there is a nervousness; a reverberation within the excess ofthe doubling process. living inquiry refuses absolutes, rather it engages with a continual process ofnot-knowing, ofsearchingfor meaning that is dfjicult and in tension. tension that is nervous, agitated, and un/predictable. (p. ) as irwin and springgay ( ) explain: whereas many forms ofresearch are concerned with reporting knowledge that already exists or finding knowledge that needs to be uncovered, action research and a/r/tography are concerned with creating the circumstances to produce knowledge and understanding through inquiry laden processes. (p. ) a/r/tography was selected as the overall methodology and philosophical approach to lead this inquiry. a/r/tography as a method helped me tackle the various components of the research questions; it fit my values, beliefs, experiential knowledge and goals. air/tography seeks knowledge through living inquiry by “creating the circumstances to produce knowledge and understanding” (irwin & springgay, , p. ). it draws the researcher into an intense, personal and interactive relationship with the topic being researched. irwin and springgay ( ) used carson and sumara’s explanation of action research and applied it to alr/tography in saying that interpretations of action research and alr/tography practices “. . . are always in a state of becoming and can never be fixed into predetermined and static categories” (carson & sumara, , p. xviii). a/r/tography calls on the artist inside the researcher to seek an understanding of self and the larger world through an artistic process. the researcher in a/r/tography acts as a facilitator who intentionally selects a situation in order to bring on social and/or political change with the help of concerned stakeholders. i acknowledge that working with seniors with dementia has its drawbacks, considering that they may not have the capacity for full blown participation in a traditional academic sense. however, this research proved that even with various levels of memory impairment, from mild memory impairment (mci) to moderate dementia, seniors were capable of expressing their wants and ideas for a space to be creative in. their participation was subtle in comparison to revolutionary and dramatic acts, yet their input was very significant in the world of dementia care, where changes are so small that, sometimes, an untrained eye may miss a brief moment of brilliance. through the arts and the search for any meaningful gesture by the participants, a/r/tography helped bring out those precious moments that unfolded in between “language, images, materials, situations, space and time” (irwin & springgay, , p. ). by documenting the responses of the participants through a/r/tography, i allowed the seniors with dementia to be heard, appreciated and to be included in the process of design. air/tography a personaljourney. by using a/r/tography as a “living inquiry” which is explained as “visual and textual interpretations of lived experiences” (springgay, irwin, and wilson kind ( , p. ), i was able to devote the same level of attention to self-reflection as i did to the participants in the study. ar/tography invites the researcher to become aware of his or her multiple roles through artistic and educational endeavors. a/r/tography also introduces an emerging qualitative method called relational inquiry and which is supported by researchers such as gergen and gergen ( ) in denzin and lincoln’s handbook of qualitative research ( ). gergen and gergen describe relational inquiry as research based on relationship, as oppose to the traditional way of conducting research based on an individual approach. as our methodologies become increasingly sensitive to the relationship ofresearchers to their subjects as dialogical and co-constructive, the relationship of researchers to their audiences as interdependent, and the negotiation of meaning within any relationship as potentially ramifying outward into the society, individual agency ceases to be our major concern. we effectively create the reality ofrelational process. (p. ) irwin and springgay ( ) use relational inquiry within a/r/tography, which is based on multiple views as an educator/learner/artist/researcher. architects struggled for ages to be recognized for their theoretical approach to design while doing their practice. a/r/tography and its understanding of relational inquiry fits perfectly with the process of designing in architecture. the three forms of knowing (theoria), doing (praxis), and making (poesis) which are fundamental concepts in a/r/tography (irwin, ) are also the structural pillars of architecture. in the past architecture was perceived as a profession that was dominated and driven by a few politically and socially influential clients with very little or no input from the public as users. structures were built in celebration and adoration of the developers as an expression of power. architecture today is more liberal and exercises democratic approaches to hear and listen to the users. the architect of today assumes the role of a learner who is sensitive to the social, political and economic issues of the situation. only then can the architect bring in the technical expertise required to create architecture just as the alr/tographers are expected to learn, change, understand and interpret (irwin & springgay, ). each time i work on an architectural project i add another piece of information to my repertoire, not only from a building technology aspect, but by understanding the psychosocial aspects of the users. each new awareness brings new ideas and new ideas turn into shapes, and forms and the cycle never ends. it needs to be pointed out that architecture is not always about a real geographical place. sometimes architecture is defined by the use imposed on the place. for example, a group of people may use the beach as a place to party and sleep. for that specific short time, the beach is transformed to contain the activity imposed on it. irwin and springgay allude to it by stating that the definition of what a “site” means “needs to be re-defined not through physical or local terms, [but] as a complex figure in the unstable relationship between location and identity” ( , p. ). as i approached this study, i thought it would be simple to explain the transitions i went through from my work in architecture to my work in gerontology. as i began to make sense of my recalled memories, i realized that i was dealing with a continuous transformation with multiple and overlapping processes that could not be contained easily in separate boxes with well-defined boundaries, starting at one date and ending at another. as i “opened” one area, i quickly discovered that i needed to turn to earlier memories to make sense of recent events in my life. i was compelled to go back and forth and unravel the meaning of what creative expression, architecture, research and dementia meant to me. in this case, the act of opening was of a personal nature; however, openings according to a/r/tography can be also applied in relationships between alr/tographers and the others they work with. as irwin and springgay suggest ( , p. ) “another purpose of a!r/tography is to open up possibilities for alr/tographers as they give their attention to what is seen and known and what is not seen and not known”. openings also refer to losses and discomforts (springgay, irwin & wilson kind, , p. ), as wilson kind refers to her own losses and difficulties in life. so are the losses seniors with dementia experience and the need to mend the environment to accommodate physical, mental and cognitive impairment. the process was not always easy or pleasant as i faced situations and asked questions about why things happened the way they did and where i was going with them. through this process i found relevance in a/r/tography and in its six renderings: “contiguity, living inquiry, openings, metaphor/metonymy, reverberations and excess” (springgay, irwin & wilson kind, , p. ). these renderings explore the process of discovering new meanings in difficult situations due to the tension, ambiguity and resistance i encountered along the way. at various times i would compare this process of discovery to dance, the strokes of a brush, playing ping-pong, giving birth, writing a poem, designing a building, listening to music, having meaningful conversations — and working with seniors with dementia in the creative expression program i developed. in short, living life. i also thought how easy it would have been if i could express myself, metaphorically, in white colour. what do i mean by white colour and how does it relate to metaphor and metonymy in a/r/tography? isaac newton ( - ) discovered “that white light is broken by a prism into a full spectrum of colors” (marmor & ravin, ). each colour represents different wavelengths and energies. it is one single phenomenon that combines many colours at the same time and produces a new colour, seemingly so pure and colourless that it presents a clean slate on which artistic activity can begin. amazing. although we now understand the mechanics of this phenomenon it still puzzles our minds. going back to the multiple roles of the researcher/educator/artist/facilitator, we know it takes time to explain who we are through verbal and textual expression. unlike the efficient presentation of white colour, our ability to perceive in one singular act who we are is limited. to make matters even more puzzling, the objects we think we see are really the light that is reflected back from them in combination with the way we perceive through our visual system. this activity of seeing and not seeing, even if we are aware of the phenomenon, creates duality and dichotomy, making us unsure and uneasy. it fits the understanding of alr/tography where, by displacing the self with white colour, we may clarify the position of multiple roles and the changes we go through while producing a new self, like the new white colour. inquiry into renderings of u/r/tography. my overarching goal in providing a creative expression program was to give an opportunity for growth, reflection, and discovery; in alr/tographic terms, to allow some renderings to play themselves out. while i was going through my own reflections, i was hoping the group of seniors with dementia would too. we were in this journey together, exploring the possibilities for new situations. although one can never be sure of what to expect while working with these seniors, the uncertainties are constant —just like alr/tography itself— as a process of inquiry. symptoms of the medical condition keep shifting. there may be good days when the seniors are just as able as those with no dementia, or bad and difficult days when they can hardly concentrate or participate in any activity. difficult days and moments such as this, when intertwined with my own uncertainties, produce situations that de cosson ( ) calls “aporia”. my own “aporia.” alex de cosson ( ) explains aporia as a place/concept of difficulty, a fluid entity in between places/ideas that is ever-changing, as the various players discover or rediscover the known and the unknown. aporia is a process of making meaning in the context of a present moment. as i was preparing the outline for one of the selected sessions for the study on friendship, my own thoughts started to infiltrate my planning given the fact that i am jewish. in exploring memories of the participants’ younger days, i was wondering where the seniors in margaret fulton came from originally. were they involved in the war in europe, were they victims, were they fighting with the allies or on the enemy’s side? i worried how it would impact my study and how i would react to the possibility that one of the seniors may have been a soldier in the german army fighting for his country. as it turned out there were no men in the group at margaret fulton and my anxiety subsided. this is my aporia, as i try to come to terms with a past that has no words to explain what happened. the more i try to make sense of it, the more i get entangled in this sticky web — wanting to believe in the goodness of mankind and yet aware of the painful realization that mankind is capable of inflicting the most horrendous crimes on neighbours and friends, with no discrimination. yet, regardless of their past, they are now old, frail with limited memory and in need of help. but so were my grandparents when they were killed. this is my aporia, my private torment of making sense of this world as it relates to my work with seniors with dementia. like the seniors, i may want to take refuge in the present and unlike them, i am still able to be selective as to what to remember. there is no question in my mind that some changes are taking place in my own perceptions of life as i work with these seniors. as irwin ( ) describes the subtle changes that take place in her life when walking around the ubc campus and enjoying a fall day: “each image holds different meanings for me though they represent the same day and time period. each image teaches me something fresh and alive through every new encounter. each image was birthed as i was created” (p. ). i too, feel the urgency to enjoy life to the fullest; every minute counts. and while the seniors are going through life assessments, i go through them too. although i am not afraid of getting old, i find myself delighted that i still have time to do things. and when i come into a room full of frail seniors, i count my blessings and feel guilty thinking that way. and yet, i mingle with them and i discover precious moments of knowledge, wisdom, humour, kindness, lessons to learn, stories of pain, suffering and of good times, traditions, history — stories i will never hear again directly from the source. while appreciating the value of older people in society, i cannot help thinking how the society they helped build is ready to discard, waste and ignore them. in rendering excess, society could spare this vulnerable population and recognize their worth in searching for deeper and different meanings. one of the difficulties in linking my artistic aspirations through architecture, research and dementia is in understanding who is an artist? is it the person who declares himself an artist? one who is perceived to be an artist by society? one who makes a living by selling paintings? one who does not sell but paints, writes music or sings for the love of it? who decides if what is being produced is art? what is art? when i look at my life as a whole, i see that art touches just about everything i do. i live art. there is no aspect in my life that does not go through the lens of aesthetics, form, shape, coordination, tension, focal points, physical and emotional perspective. i am thinking who is my audience, who is using my buildings, are they still going to like them in one month or years from now? i see art when i cook, do gardening, sew, knit, give haircuts, design buildings and their interiors. architects need to consider material selection, aesthetics, compositions of form, colour, and balance whether on paper or on “real” sites. i select art to fit my designs, my clients and their budgets. i see art selection as an extension of my own designs. i create. this act of creation spills over into other areas and continues to change, influence, agitate, comfort and heal not only my clients but myself as well. designing a building does not differ from creating a painting, a sculpture, a play for the theatre, a dance. the architect, the artist, the dancer — all are trying to express themselves through a creative process that takes in information through the senses, then digests it while searching for meaning, and delivers it in multiple ways. each drawing may lead to another and each dance may inspire another. none of these forms of expression are limited, isolated and contained. i also enjoy the opportunity of designing stained-glass windows and furniture to satisfy the “real” artist in me. as i try to understand what attracts me to work with seniors with dementia, i think it may have to do with the fascination i feel working in situations and with materials that appear to the eye very fragile, such as glass, and yet have hidden and surprising qualities of strength. it is in this paradox that i find my most creative moments born. it is the tension between opposites that intrigues me. i am always curious about what may transpire and i look forward to challenges that will inspire new ideas. not every road leads to success but i learn as much from failures. when i got interested in designing stained-glass windows for the buildings i designed, i was told by experts that there were limitations to how glass would respond to cutting and this would limit the scope of the design. although i understood the limitations, i wanted to break away from the traditional design approach and be open to whatever might come my way. i have been ridiculed for being naïve, for venturing into a field where i did not pay my dues. but what some did not understand was this: the sheer fact that i was not trained meant that i was not boxed in. i could look with fresh eyes at how to use glass in different ways, for partitions, windows, roofs and even floors. i have come to appreciate glass art by doing it. living it. like everything else in my life, it seems that my practical experiences propel me into new endeavors. trying to understand how things come about and where they are going, i explore the rationale for their being. this back and forth is an effort to make sense of the world, and at the same time be aware of new possibilities. it fits within the six rendering of reverberations described in alr/tography (springgay, irwin, wilson kind, ). as the glass was breaking away from the pieces i needed for various projects, i became aware of the accidental shapes of the broken glass. i was drawn to create new compositions, using different techniques and making a deliberate effort to leave the accidental pieces as they were. i found myself checking each excess piece, for its shape, colour and how i could continue to use it. all of a sudden, the leftover broken pieces were more exciting than the projects i had already designed. at this point, the renderings of opening and excess came into play, inspiring the creation of three-dimensional glass sculptures i call my accidental projects. as i write about it, i realize that i use the same approach in my work with seniors with dementia. i try to chip away at the obstacles that prevent the seniors from using their remaining abilities. as i do that, i am aware that their responses may be unpredictable. and like the sharp edges of the broken glass, i may need to smooth the rough edges so we can continue to work and minimize the harm. as i walk into the workspaces allocated for art activities in most long-term facilities i have visited, i feel so discouraged. the artist in me shrinks at the gloomy prospect of having to pretend that space is unimportant in the creative process. the facilitator in me takes over to mediate the circumstances and do the best i can under these conditions. the architect in me wants desperately to design the state-of-the-art studio that would take into account all physical, emotional and artistic needs of seniors with dementia. the researcher in me is already busy collecting data, searching for the right methodology that will explore whether or not it is important to provide an appropriate space and atmosphere that may or may not be conducive to creative expression activities. i very much liked mcniff’s description of space and function in what he calls “the studio”. architects who design therapeutic environments will find this description of great interest. i emphasize the studio because we need it more right now. i know that i desire the studio. there is not enough of it in my life. two decades ofworking with graduate students and art therapy colleagues has shown me that they hungerfor it too, and the phenomenon of art therapy needs the studio. ifi walk into a medical environment with its chemical and antiseptic smells, my soul is aroused only to the extent that i want something else. the medical environments can sometimes be the antithesis of art. the studio summons the artist in me and the artist in art therapy. (p. ) irwin joins mcniff’s desire to work in a studio situation and be inspired by the ambience the space offers. as she states in her article, walking to create an aesthetic and spiritual currere, “whenever i walk into this space, i become acutely aware of my need to create, my need to care for the urge to create” (p. ). and so, the architect in me becomes vety practical and sets to work within the rendering of excess, trying to find solutions from a wasted situation. working within the rendering of reverberations, i find myself pushing against the administration and their resistance to any change in the status quo. the architect in me asks: how can i change the conditions, improvise, use skills and knowledge, use innovation and creativity? and so, i find temporary solutions in various situations, such as these. i was lining up seniors to paint on a glass partition wall in a long-term care facility where i was conducting creative expression activities. i knew the glass was tempered, easy to clean, safe and a novelty. the results were exciting. the seniors wanted to draw and produced many of the artworks that were displayed later in an art show on creativity and dementia. on another occasion, i lined up seniors in front of a glazed exterior wall facing into the garden. as the sun was coming around and shining through the drawing paper posted on the glass doors, i was in awe of the beauty of the light, the shadows on the wall and floor, the seniors painting and loving the warmth of the sun. i grabbed a brush and started to paint. when i came home, i wrote down every detail that would help me understand what happened that day. at that time, i shot a whole roll of film that now helps to demonstrate the importance of having an appropriate space for creative activities. air/tography also stresses the role of the researcher as an educator. as irwin explains in her philosophy of teaching: art pedagogues become involved in their own continuous learning while recognizing the personal knowledge, interests, experience of the students in their care. pedagogues wish to nurture the growth of their students’ emotional, intellectual, spiritual and intuitive powers in a cooperative learning environment. learningfor the sake of learning is not enough. importance must be placed upon translating understanding into action, empowering students to be active creators and potential transformers of their material and cultural world ... (irwin, ) http://cust.educ.ubc.ca/faculty/irwin.html although i do not call myself a teacher as the result of formal education in that profession, i do think of myself as an educator/learner. i have taught hebrew for many years to young children and adults, i have home schooled my children, taught interior design to university students and served as a mentor to university students over the years. in education terms, i consider myself a facilitator. i facilitate a situation in which the people i interact with are encouraged to express themselves. working with seniors with dementia, i find myself learning from them as well. i am there to release what they have already known for a long time and may have forgotten. i am there to provide information that may be new to them at the moment, but which i know they knew once before. and so i borrow from psychology that claims that familiarity is an automatic inherent human quality — seniors with dementia may feel familiar with a situation or an object although the memory of it was destroyed. for example, seniors may not remember me as dalia, the person who comes in once a week to work with them on creative expression activities, but they may link my presence with something that is pleasant and enjoyable and perhaps with food, since i often bring homemade desserts or food to most sessions. concluding thoughts on architecture and a/r/tography. there are two issues that come to mind when discussing architecture and alr/tography. one is the unquestionable link between the visual expression of architecture and the text that comes along with it. the second issue is the opportunity that alr/tography opens up for the acknowledgement of architecture as practice and as theory. air/tography is described as “a coming together of art and graphy, or art and writing” (springgay, irwin and wilson, , p. ). since architecture is a form of artistic expression, i can substitute the word architecture for “art”. to test the notion of architectural drawings without text we need to ask the following: could a building stand on its own merit without a name, an address, without occupants or the name of the designer? could the building be understood without asking why it was built and what for — when it was built, what was the cultural context, and what materials were used? without this information would we understand the full meaning of its purpose? i would say, no, we would not understand the full meaning of its purpose. we should not forget the reams and reams of drafting papers, trails of sketches, meshing art and technology and text together. what about the historical written information of negotiations for permits with various authorities? when we understand that the building is also a product of local and national building codes, do we get the full picture then? looking at a building without knowing its context is like trying to read egyptian hieroglyphics. yes, we can see them, but can our minds make the necessary connections to make sense of them? then i wondered: if we separated the text from the drawings, could we count on the text alone, following the same specifications, to guide us towards the same exact building design. i believe that in spite of working from the exact specifications, the design would vary from one designer to another. the individual architect’s ability to perceive, analyze and produce would be reflected in each interpretation. this observation is based on many years of architectural practice and comments from colleagues in the field. to support this observation, there is an interesting example about how text alone fails without the adjunct image. although very detailed plans of noah’s ark or the holy temple in jerusalem were described in the old testament, we cannot know for sure what they looked like. in artistic interpretations of the temple and the ark, we witness several versions. all claim to be the closest interpretation of the biblical text. the second issue that deals with architecture as practice and as theory refers mainly to architecture that focuses on therapeutic environments. architects do theorize and contemplate through their ideas and planning as to how things will be done. architects through their practice and theory generate new ideas and forms and invite the participation of their clients and users. michelle fine ( ) was quoted in gergen and gergen ( ) questioning the future of qualitative research with references to relational inquiry which fits the process of making architecture: “what elements of qualitative research are productively engaging toward democratic/revolutionary practices; toward community organizing; toward progressive social policy; toward democratizing public engagement with social critique?” ( , p. ) the most important message that came out of understanding a/r/tography is that the human spirit is an amazing, regenerating force. like water in a river, our brain will seek an outlet and find ways to communicate, to express. we need to provide opportunities and means for everyone, especially people with dementia, to continue to communicate in many forms. we need to listen to the unsaid and to what may be missing. while others may accept the appearance of dementia and take its impediments for granted, we must question that acceptance, look below the surface and tap into the human spirit — of the seniors and ourselves. just like alr/tography, we need to allow the images, the text, the story, the real and the imagined to coalesce into meanings so we can understand better how visual and performing arts can be used in communicating when other ways of communicating fail. ajr/tography allows researchers to bring their own storyline into the situation under study, a storyline that may influence, intersect, observe and interact with whatever the researcher/artist is engaged with and brings to the study. a/r/tography gives freedom for the researcher/artist to process theory into the production of the art. in one singular expression, theory and practice are fused. artists understand this fusion; they do it all the time whether they are aware of it or not. i employed alr/tography as a mean to collect data throughout the study. this approach provided an opportunity to examine the role of the researcher in making a difference in the seniors’ abilities, as they were demonstrated through creative self-expression, and by changes that were made to manipulate the architectural environment. the multiple roles of researcher/educator/artist/facilitator in the implementation of the creative expression activities program were also explored in an effort to elicit crucial information that could be used by behavioural scientists with a focus on dementia care. during this study i had the opportunity to propose a design for stained glass doors for the l’chaim adult day care centre. the design, which is discussed elsewhere in this dissertation, is based on my experience as a stained glass designer and my familiarity with the jewish culture and faith. i also experimented with architectural drawings in an effort to shed my position as an authority, the one who knows better, by condensing key issues that could be understood at a glance, and appeal to various cognitive abilities in seniors with mild cognitive impairment to moderate dementia. the idea was to bring across information without having to read the whole document, which would have been a monumental or impossible task for the participants. the drawings include photographs that were taken of participants during the various activities, significant quotes and textural summaries regarding the spaces that were used during the various sessions. i was also aware that an ajr/tographer did not necessarily have to produce an artistic product as long as the rigor of the study and its philosophy were maintained. as stated by irwin and springgay ( ): “artists engaged in alr/tography need not be earning a living through their arts, but they need to be committed to artistic engagement through ongoing living inquiry” (p. ). as i was exploring ways to go about my academic inquiry, i realized that i had included intuitively in my practice many of the ingredients that describe alr/tograpic research. i was interested in experimenting with ways that would better the quality of life of seniors with dementia with a focus on the links between creative expression abilities, space and programs. experimenting comes naturally to professionals trained in architecture and design. we are trained to look at the world around us, assess it functionally and aesthetically, to almost automatically and spontaneously look for ways to see things differently. we assess existing situations of spaces interlinked with human behaviour, and then we revise or design spaces to suit the clients’ physical and emotional needs. and we assess the results of our work, and its impact on the client’s well being, to judge whether or not the project was successful and whether it answered the objectives of the project. i was also aware of the balance of power between myself and the participants. i fully understood the conflection between being an architect, researcher, facilitator, educator, when i invited the participants to express their opinion as to how i should position myself in the room when i talked to them. i like to stand in front of the group, like a teacher in a classroom. no one complained. it was taken for granted that this is how it should be. but when i opened the floor for discussion as to whether i should sit or stand, it quickly became an issue of exhibiting superiority, the person who knows best, the expert. the moment i sat down, the balance of power changed. as one of the seniors at l’chaim centre put it: “you are now one of us”. such a small gesture became very significant in the interaction with seniors with dementia. in addition to the new understanding about standing or sitting and the roles attached to it, i learned that reflexivity, which is sharing personal and subjective life experiences with participants, caffies a danger of silencing participants if the researcher goes overboard telling these stories. i learned that there was a fine line between getting the participants’ attention with personal stories and the danger of overburdening them. initially, when i planned how the data would be collected, i was aware that some limitations would affect the procedures and the overall approach to this study. first, the opportunity for experiments with major architectural changes was slim and, therefore, participation in changing a real situation would not exist or be affected by the feedback from participants. although i was drawn to participatory action research, at that point i opted not to use it. there was also deep scepticism about whether people with dementia could participate in research inquiry in a meaningful way. as the study progressed unpredictable new developments made me aware that seniors with dementia could participate in research when given an appropriate opportunity. since the decisions to make some interior changes were going to be made very fast, just when i was about to go on a trip, i was asked to provide ideas for floor covering and wall and door paints. i used data collected in a previous session that included the seniors’ ideas on how they would like to design their dream art studio in the centre. after the renovation was completed, i interviewed the seniors about the changes again, made notes of their opinions and made some efforts to address their concerns. this process is still going on. at l’chaim, i was able to respond quickly to the changing situation. to support the need to be flexible and open to unpredictable events, one can listen to the views of some researchers who are artists. lenore wadsworth hervey’s ( ) book artistic inquiry in dance/movement therapy, creative alternative for research, shaun meniffs work ( ) freedom ofresearch and artistic inquiry and roger grainger’s book ( ), researching the arts therapies, a dramatherapist’s perspective support my own way of thinking. lenore wadsworth hervey quotes mcniff ( ) as he explains the characteristics of creative researchers and their traits: the need to explore the widest range ofpossibilities and chance events; imagination; openness; persistence; the ability to change strategies in response to the material under review; the mixing ofdisciplines; a willingness to err; intuition; an interest in the unknown; an inability to simply follow the tradition of logical analysis; personal powers of observation and interpretation. (p. ) any artist/researcher who is engaged in artistic inquiry can identify with this description. artists inherently resist urgings to follow step-by-step prescribed regulations. a certain rebellious streak leads artists to veer off the main course and look for ways to capture the process of inquiry from several unconventional angles. at the beginning i envisioned a democratic style of inquiry, where all concerned participants would be equally important — mainly to protect the least heard people: the seniors with dementia. from a purely academic standpoint, conducting participatory action research would be controversial since seniors with dementia need to be declared competent and capable of giving consent. nevertheless, working within the limitations of this population, i still managed to accommodate input from the seniors utilizing their remaining cognitive and physical abilities. as roger grainger ( ) put it: ifwe are lucky, ofcourse, we may find exactly the right kind of research technique that we need. ifnot, we must use the most appropriate one for our purposes. this may mean adjusting the situation in order to find a suitable way ... (p. ) grainger ( ) states that involvement is a key issue in research using “as many sources of information as possible. instead of concentrating on observations” (p. ) made by unbiased observers, all parties have direct input into the research process. in his research he uses “interviews, questionnaires diaries and journals, narrated accounts of personal experiences, reports of interactions observed either overtly or covertly or both, plus the use of video” (p. ). he also explains that “leaders of the group go to considerable lengths to develop a shared atmosphere of trust and co-operation” (p. ). a model for researching creative expression abilities, social interaction as they are linked to creative expression programs and the physical therapeutic environment is roger grainger’s book, researching the arts therapies; a dramatherapist’s perspective ( ). grainger joins shaun mcniff in his approach to the arts in healthcare. they both embrace a wide angle approach that marries the arts with the sciences. their approach is to research the arts in a natural way, offering the least resistance to what begs to be explored. their philosophical approach to research shows flexibility, openness to changes that flow with whatever arises from the exploration; it celebrates ambiguity, thriving on tension, as the researcher and researched are engaged in a dance-like relationship. grainger’s approach literally embraces life. he mixes methods of research as needed. it may be a mix of any of the following: qualitative and quantitative research methods, action research and art-based research. like shaun mcniff and others, he draws examples from art, music, dance and movement therapies. in this way, we see ourselves as practitioners and researchers as the same time. our research is grounded in our experience. as in alr/tography, grainger concurs that “the impetus to explore it [psychological therapies] came from my own personal involvement in it” (p. ). grainger tries to explain why research in the arts cannot be forced into compliance with rigid scientific rules. the following quote illustrates a fundamental thought that supports the reasoning as to why the arts in the service of healthcare need to be approached differently: thus although the creative therapies may be said to ‘use’the various art forms, they do not do this in the sense that we often mean by the word use. they do not subsume them in any way. in the human attempt to be ‘scientflc’ they may try to reduce them to something that can be reproduced in terms of one own existing mental schemata, but they are bound to fail because art cannot be used in this sense. it has an innate tendency to keep cropping up when and where you were not actually looking. because ofthe effect it sometimes has on you, your reaction to it, it sometimes feels that it is it that is actually using you ... phenomenologically, arts stands apartfrom what it is deeply concerned with: because it is a living symbol ofrelationship and ‘betweenness’, it can help us in our search for human wholeness. (p. ) grainger warns that limiting ourselves to research that allows us to study “what we are able to measure” (p. ) will reduce what we really want to know or change altogether the direction of the inquiry. summary of research methods this study employed a!r/tographic research within the qualitative paradigm. a/r/tography seeks knowledge through living inquiry and a commitment from the researcher as an artist and educator to a process of questioning. air/tography recognizes the ambiguities, uncertainties and the difficulties that can arise from situations and seeks understandings of them. a/r/tography allows the researcher to be self reflective. a/r/tography gathers information from relational conditions that support democratic relationships with other participants in the inquiry. it also invites participants to be part of the study process and experience the resolutions if they happen. a/r/tography and its understanding of the multiple roles of the researcher and his/her involvement through relational inquiry fits perfectly with the making of architecture as practice and theory. the three forms of knowing (theoria), doing (praxis), and making (poesis), which are fundamental concepts in alr/tography, are also the structural pillars of architecture. ethics in research ethics is an area of major concern when conducting research with vulnerable populations such as seniors with dementia. the literature on the topic of ethical issues in healthcare in general is enormous. in a course on ethical and philosophical issues in community-based research presented by drs. michael mcdonald and jim frankish, i had the great opportunity not only to discuss ethical issues that were relevant to the participants we work with, but also to reflect on my own values and woridview, to be aware of the levels of objectivity or subjectivity reflected in my research. this course covered fundamental challenges regarding the ethical conduct of research and related issues of power, participation and ownership of knowledge. articles by authors such as mackim ( ), minkler, faden, perry, blum, moore & rogers, ( ), williamson and prosser ( , a) all touch on dilemmas and problems in conducting research. issues such as personal rights versus the good of the community at large were discussed. in studying seniors with dementia we need to be aware of: a). the limited memory capacity and frailty in seniors with dementia, b). their ability to give written consent, c). the role of the legal guardian and their relationship with the senior with dementia, d). the role of the administration in the care facility, e). the trust that needs to be established between the researcher and participants and all other concerned parties. i am mostly concerned with: f). how much can we tell the seniors about their diagnosis of dementia, and what purpose would it serve? g). in the pursuit of academic honesty, should we cause sadness and anxiety in our participants by reminding them of their diagnosis, knowing they may forget about it in few moments or in a day or two? h). by not telling them, do we then sacrifice their right to be informed and knowledgeable about the study they are about to enter? i). what happens when a senior with dementia gives consent, but the legal guardian disapproves of their participation? j). what happens if a facility manager is reluctant to let research work be done in the facility, even though the resident and the family approve? an attempt to answer these difficulties in executing ethical research lies in a fundamental philosophical approach to life that can transcend borders of culture and geography: it is the profound conviction to maintain and respect human life and the right to live in dignity. this respect for human life transcends the duty between child and parents and encompasses the duty between an individual and the society at large: the home is infinitely more important to a people than schools, the professions or political life; andfilial respect is the ground ofnational permanence and prosperity. ifa nation thinks of its past with contempt, it may well contemplate its future with despair; it perishes through moral suicide. (in pentateuch and haftorahs, p. ) to satisfy academic requirements, i realize it is important to back up personal convictions with literary sources. in denzin and lincoln ( ), chapter , valerie . janesick ( ) states that: the myth that research is objective in some way can no longer be taken seriously ... as we try to make sense of our social world and give meaning to what we do as researchers, we continually raise awareness ofour own beliefs. there is no attempt to pretend that research is value-free. likewise, qualitative researchers, because they deal with individuals face-to-face on a daily basis, are attuned to making decisions regarding ethical concerns, because this is part offlfe in the field. from the beginning moments of informed consent decisions, to other ethical decisions in the field, to the completion ofthe study, qualitative researchers need to allow for the possibilities ofrecurring ethical dilemmas and problems in the field. (p. ) janesick also discusses the need to construct an “authentic and compelling narrative of what accrued in the study and various stories of the participants” (p. ). in the following areas i attempt to answer ethical considerations: frailty, memory capacity and giving an in formed consent. the health condition of seniors with dementia was the single most important factor in designing this study. based on my experience i set these conditions: • limit the time allocated to each session • be prepared in case of emergency and have resources in place for support • be careful not to expose the seniors intentionally to stressful activities or stressful environments in order to prove a point. while some experimental situations can be considered, i would not worsen existing conditions • limit situations that knowingly keep away interventions that may benefit them • allow participants to move around and leave at any time memory capacity. based on my experience, seniors with dementia may remember giving consent for time periods ranging from a few minutes to several hours or several days. it depends on each individual and their capacity to remember. i made sure the seniors were reminded every once in a while of the reasons i interacted with them and the objectives of this interaction. written consent and dementia. most seniors with early to moderate dementia can still read and write. they may not understand complicated concepts, any more or less than people outside the research field, or their peers of normal aging. therefore, written and verbal information needs to be clear and simple to understand, without compromising the integrity of the study. all the participants at l’chaim centre provided their consent. at the margaret fulton centre, the consent of the selected participants was accompanied with their family’s consent. the role of legal guardians and the relationship between them and seniors with dementia. in an ideal situation both parties would be in agreement and happy to take part in the study. however, legally, seniors with dementia can be declared incompetent by the legal system and consequently relinquish their rights to act independently and be solely responsible for their actions. problems arise if the parties do not see eye to eye and one would like to participate in the study while the other refuses. this is a delicate situation. if a senior with dementia refuses to participate, that decision should override any other. if the legal guardian refuses, if possible, further negotiation can take place in very tactful ways and with full respect for the outcomes. as it turned out, one participant at margaret fulton centre refused to participate in a couple of sessions. although her husband was fully supportive of her participation, i felt it was more important to respect her wishes and let her leave the room and join another activity. preserving her rights to control her wishes was more important than my need to conduct this study. the role of the administration in the care facility. the administration is there to protect the seniors with dementia and make sure their needs are met according to the policies of the facility. however, some situations may become sensitive in cases where the research work may be rejected or manipulated for fear it may interrupt the daily routine in the facility or threaten the administration by being critical. at margaret fulton centre, there were issues with scheduling and the difficulties in assigning staff to help during the session. however, at the l’chaim centre, there were underlying issues of power and control that concerned the director. the trust that needs to be established between the researcher and participants and all other concerned parties. this took time, and careful consideration was given to be sure consents were given of free choice. in both centres the process for acquiring the consents followed the prescribed regulations provided by the university of british columbia and the vancouver health authority. how much to tell the participants about their diagnosis of dementia. this is one issue i struggle with when working with seniors with dementia. on the one hand, i am expected to announce my intentions clearly and without ambiguity, yet there is a concern about discussing dementia with the seniors for fear of causing them unnecessary stress. i rely on the administration to provide me with medical information and to let me know if the seniors are informed of their medical condition. many of the seniors did acknowledge their memory problems. some knew about their diagnosis but forgot it, and did not mind being reminded. no one got upset to learn about their condition. i announced my intentions only when i felt that it was appropriate to discuss them and when we all felt safe. generally, i avoided the issue if! could. i believe the participant has the right to know about his or her health condition. however, i also believe in protecting participants’ wellbeing and this is the point where it becomes an ethical dilemma with no easy answers. sites selected the margaret fulton adult day care centre in north vancouver and the l’chaim adult day centre at the jewish community centre in vancouver were the sites chosen for conducting the intervention of creative expression activities and documenting the physical facility for data collection. the two facilities provided different qualities of space, participants, and operational procedures for the program of creative expression activities. figure : locations of margaret fulton and l’chaim centres the margaret fulton adult day care centre this relatively new facility is located at mahon park in north vancouver. it provides a broad range of health services and support as well as socialization opportunities for seniors. the centre, built in , was designed by sean mcewen, architect with significant input from the centre’s staff. it can accommodate up to seniors a day, but is funded for only . seniors. there are four full-time employees, part-time employees and volunteers. the centre includes: entrance! reception area, nursing station, director’s office, staff area, quiet area, dining room, washrooms, outdoor area/garden, kitchen, janitor’s room, laundry room, bathing facility, beauty salon, arts and crafts area, exercise area, sitting area/fireplace, emergeney!treatment room, storage room. the centre covers about , sq. feet. (source: gvrd cert/ied municipal map) figure : exteriors of margaret fulton centre in north vancouver, bc the program in this centre includes nursing supervision, health monitoring, assistance with personal care, and recreation for groups and individuals. a hot lunch with special diet options is provided. the program also provides valuable respite care for families by taking in frail elderly individuals cared for in the home; it is one of only two programs that provide this care in the region. this centre was the focus of a study conducted by stacey diane grant for her master’s degree in gerontology at simon fraser university in . the objective of the study was “to determine how adult day care (adc) clients with dementia are affected by relocation when staff, programming and daily routine remain constant” (p. ) grant sheds light on the interplay between the physical environment, the use of the space and the physical and cognitive abilities of the seniors with dementia. she also refers to the environmental press, a term invented by lawton and simon in , who describe it in these words: as “the competency of an individual decreases, the greater the impact of environmental factors on that individual” (grant, , p. ). personal competence is described by lawton ( , p. ) as “[ijntrinsic performance potential, the maximal expectable performance in biological, sensorimotor, perceptual and cognitive domains.” figure : interior shots of margaret fulton centre in north vancouver, bc the l vhaim adult day care centre l’chaim adult day care centre is located at the jewish community centre in vancouver. the centre offers therapeutic, social, and recreational activities for homebound people who are elderly and/or have disabilities. it provides a jewish atmosphere and hot kosher lunches. the centre, established in , moved to its present location in after the entire building was renovated. it can accommodate seniors at a time and has part-time employees, no full-time employees. the centre has volunteers, of whom sit on the board of directors. it covers about , sq. ft. the centre includes: one large lounge with furniture that defines areas for various activities, some lounge chairs for relaxation, a fish tank, kitchen area, washrooms, outdoor deck, two offices, storage room and treatment room, which was used for storage until recent changes to the centre. it is now a treatment room again. a sin figure : l’chaim centre exterior shots participants selected this study focused on men and women with dementia over the age of at the two adult daycare centres. the initial ann of this study was to explore how the physical setting supports, stimulates or hinders the learning environment for seniors with early to moderate dementia to express their creative abilities. as the selection of participants began, it became apparent that selecting a homogeneous group of people in both centres would be too difficult to achieve. of the two centres it was easier to select a group of participants of similar cognitive abilities at the margaret fulton centre, since it was geared to serve difficult cases with more advanced dementia, while participants at the l’chaim centre were of mixed abilities, ranging from normal cognition with physical frailty to mild cognitive impairment to moderate dementia. figure : lchaim centre interior shots over the course of this study, emerging new information became available on mild cognitive impairment (mci) and the significant implications of detecting this condition as early as possible. mci is a stage in memory decline between normal aging and the diagnosis of alzheimer’s disease (ad). it is sometimes referred to as amnestic mild cognitive impairment (amci) and is characterized by a mild memory decline in the context of normal daily functioning (feldman & jacova, ; petersen, ). the majority of individuals with mci develop alzheimer’s disease (ad) within years (petersen, grundman, thomas, thal ( , p. - ). literature on mci indicates that learning interventions may help people with mci to halt the deterioration. several studies underway are exploring memory intervention in amci. one of them is funded by a - alzheimer’s society of canada grant, where drs. troyer, murphy, anderson, craik, moscovitch & marziali examined the effectiveness of a multidisciplinary intervention program for improving memory functioning in individuals with amci. preliminary findings indicate that the intervention resulted in increased use of memory strategies, increased appreciation for the effects of lifestyle factors on memory, and improved ability to learn new names. given the recent information on mci, participants who were diagnosed with mci, were included in the interviews and the intervention in this study. the selection of the participants was controlled by the directors of both centres. at the l’chaim centre, permission to conduct the study was dependent on my consent to include all the seniors, regardless of their range of abilities. at the margaret fulton centre, the director selected eight potential participants —later was reduced to seven people — with group of five women who stayed together through most of the four sessions. figure : participants at the mfc and lc centres data collection the data was collected in several ways. it included field notes, filming, photography, and drafting. no field notes were taken during interviews. all field notes were written immediately after each interview and each session. the field notes were based on my perceptions and were entered on a computer. the film activity was recorded and coded; the recordings were transcribed verbatim. the digital photographs were transferred to the computer, and the drawings were entered on the computer in autocad. recording the intervention . field notes. notes were written immediately after the activities were completed, usually within hours. they included my personal observations, feelings, thoughts, comments, understanding of what transpired during each session and ideas for the future. the notes, including the date, location, and who was present, were entered on my computer. . filming and sound recording. filming gave me the opportunity to see things that transpired during the sessions i could not catch in the moment, whether it happened out of my range of sight, or i was too busy to see or hear the importance of the event when it occurred. it also gave me a more comprehensive view of individuals and of the group, and the ability to review it several times. two cameras were used: a stationery camera and a mobile camera. one sony pd dvcam continuously filmed from a fixed wide-angle position showing the entire group seated around my working area. it used hour tapes. the sound was recorded from one wireless microphone i wore. a second backup mini dv camera was used for close up and roving shots. this camera required tape changes at minute intervals. normal room lighting was used except for one test session experiment using added focused light. the video tapes were then transferred to vhs viewing tapes with time code information made visible on screen. the vhs tapes then were played on a rented professional video cassette player with a shuttle control. the films were labelled and divided into four groups: dv tapes for margaret fulton and l’chaim centres and the same for the vhs tapes. the timeline that was inserted on the vhs tapes for editing purposes helped to locate specific clips with ease. here is a description of the process: • dv acquisition xfer to reference viewing media with time code (tc) picture burn :hr:mn:sc:fr • edit process to digitizes dv camera footage using bum reference as directed • edit first to final cut through three approval stages before outputting to master • output master including thesis menu index for footage references, as directed by the author . transcribing. a ubc student was hired to do the bulk of the transcribing. i checked the text for accuracy as i reviewed the video tapes. after the films were transcribed i selected the most significant moments to be included on a dvd that is attached to this document. although some information was lost in the process viewing the videos for accuracy helped tremendously, since i could then concentrate on smaller details. it actually forced me to pay attention to the smallest sounds and to translate hebrew and yiddish into english. transcribing verbal sounds into text was the relatively easy part, what was more complicated was describing the body language. transcribing forced me to pay attention to the written word while blocking out other stimulus such as hearing and seeing. transcribing was an essential part of the study that complemented other ways of collecting data. . photography. i kept a digital camera with me at all times. i have used photography for many years as a way to freeze interesting moments wherever i go. this study was no exception. with the consent of participants, families and the administration of the centres, i took photos of participants interacting, laughing, holding a violin, doing artwork and dancing during the sessions. i did not use the camera when situations were sensitive, since early on. i decided that the needs of participants would come first before the needs of my research. . drawings. i used sketches and photographs to document the location of furniture, cupboards, tv screen, music instruments and plants. floor plans were supplied by the architect of margaret fulton centre and the building manager at l’chaim centre. the drawings of margaret fulton centre were up to date. the floor plan at l’chaim had to be redrawn since the measurements were not to scale. the information was given to a bcit student who used autocad for transfer to the computer. i worked closely with the student and provided additional information in free hand drawings. once the information was entered into the program, we could move things around and experiment with sizes and distances in a fairly short order. the room arrangement for each session at the two centres was documented. it included the furniture placement, room dividers, all the fixed features such as doors, windows, lights, kitchen counter and sink, where the participants were sitting, where i positioned myself, measurements of distances between participants and objects, the location of the camera and the camera man, the musicians and the musical instruments, and the tv. each drawing was accompanied with still photos that were taken at the same session and included photos of inside and outside spaces. all of this information was used in the final drawing for each centre and contained recommendations for future architectural changes. . interviewing. the participants were asked if i could visit them at home for an interview. i described the style of the interview as a relaxed conversation. i made a point of not taking notes during the interview, nor did i use the camera. i felt privileged to enter their private life and wanted to keep it that way. for ethical and safety reasons, in my later notes i did not give too much information about the participants’ homes for reasons of privacy. in the case of participants with more advanced dementia, i called the families to arrange an interview once the participants themselves expressed an interest in doing so. wherever possible, i preferred that a family member was present. the interview lasted from one to two hours. the visit was designed to give me some clues about the interests the participants may have had in the past and in the present. it was an opportunity to see hanging photos or photo albums of family, friends, pets and traveling. it was a time for reminiscing and sharing life experience. the information collected was then used in ways to attract the participants’ interest in the creative expression activities program, such as asking questions that were relevant to them. the interviews gave a better understanding of the person inside the disease. as a researcher i found the life experiences of the participants fascinating; they enriched my own life experiences and helped me connect and bond with the people i was studying. analyzing data i was looking for new understandings and emerging categories from recurring situations that could eventually congregate into patterns. i also was looking for unique moments that stood out and contained significant information. i identified these patterns by using color coding, available through -microsoft word. as i read the written data, i assigned a color to each situation, such as being anxious, sharing life experiences or expressing an opinion. the color coding turned into a legend that grew more refmed as the study progressed. the legend was re-adjusted, upgraded and re-inserted on each document as i searched for details that had escaped my attention. if necessary, i added highlights to the missing analysis. towards the end, the legend grew quite comprehensive and patterns took visually and contextual form. this technique appealed to my artistic taste and called on my curiosity as to what color code meaning what situation, activity or behaviour were most prominent. legend (example) needs hebrew translations from the video and inserted into the _____________ transcriptions. dalia sharing personal information i i participants sharing life stories. reminiscing. participants’ acknowledgement of memory problems memory and behavioral issues space issues (lights, circulation, finishes etc) socializing participants evaluating/commenting on to day’s session participants enjoying music and the session. showing interest. non-english words (n-ew’s) staff interfering with activity safety issues ideas for future sessions show this in a clip where relevant part cpints be art supplies dali g insti tools for collecting data: interviews interviews with participants at margaret fulton centre originally, eight women were selected at margaret fulton centre to participate in this study. seven of them participated in some or all of the sessions. all were previously diagnosed with dementia. their ages were , , , , , , years old. the oldest person participated in only one session out of four sessions; she stopped coming to the centre for medical reasons and therefore was not interviewed. another was admitted to a long term care facility and stopped coming to the centre altogether. the remaining five women formed a core group that participated in most sessions. three participants were interviewed in the presence of their husbands. one participant was interviewed in the presence of her daughter. the following is an example of the field notes that were taken immediately after the interview was completed. figure : margaret fulton centre art facilitator and a participant example interview with a margaret fulton centre participant: july , interview with margaret dyks and her husband at their home i made a mistake. i arrived one day early for the appointment. i wrote it a little messy in my calendar and read it wrong. nevertheless, bill and margaret were home and had time for an interview. margaret was sitting in the living room on their couch. they had just arrived from the dentist where margaret had a tooth fixed. margaret was dressed in a sweat shirt and was pulling on her sleeves to cover her hands. bill was in shorts, a t-shirt and sandals. it was a hot day but i noticed that she is also cold at the day care and is always dressed warmly. at times too warmly. it seemed as if it was taken out of the s. something like my mother would have. bill sat down with us since most of my conversation was with bill. although margaret would smile or watch me talk she would look away whenever i wanted to make eye contact with her. she kept on looking at bill as if asking for approval before she answered my questions or even responded to any of my comments. was telling me about their grown children, daughters and one son he also told me about their j!utine and skating. bill gave me an envelop with copies of a letter to the editor of the north shore erand an article that was published as a result. bill took me to the kitchen to show me albums full of newspapers articles and memoirs he was writing. bill agreed it was a good idea. i don’t know if he will follow up on the advice. margaret seems to show interest when the topic of discussion is about skating and singing. at one point i asked margaret about her singing in her church choir and if she enjoyed it. her answer was short” i am a singer” and she looked at bill at the same time. i was there for about hours. during that time margaret sat in the living room and did not get up once, even to join us as bill was showing me around. while i was there i had to call my own doctor for an appointment. as i was dialling the number, i noticed that the phone was covered with phone numbers not in an organized fashion. bill saw me looking at that and he was quick to explain that it was to help margaret remember phone numbers towards the end i asked margaret if she would like me to come back. she responded by shrugging her shoulders and twisting her lip to one side, as if saying she was not so sure about it. i have to admit, i was surprised at her response, and yet i needed to be reminded that having dementia might bring out responses that usually would be more controlled. when i left, bill was very apologetic and waved good bye. ‘it was apparent that margaret trusts her husband bill and is dependent very much on his care they still go out to music events, skating and occasionally see friends for dinners orir:h. i visited out of the participants at home in an effort to learn more about their background, families and interests. i did not visit two of the participants that were identified as having normal cognitive abilities; i was mainly looking for clues in the participants’ own home environment that might provide information on their interests in art work, home decoration, taste in colors, hobbies, and to listen to their life experiences as we leafed through their photo albums and photos hanging on the walls. by doing so, i gained a better understanding about how to engage them during the intervention of the creative expression program. the following is an example field notes that were taken immediately after the interview: example interview with a l’chaim centre participant: july , interview with jack beckow i arrived on time at :oom as we had agreed. it is a hot summer day. jack buzzed me in through the intercom. i went up to the floor where jack greeted me very warmly. he was dressed in a blue jogging suit. the air was flowing in from the open doors to his balcony. there was a beautiful view looking over the flats of richmond and the approaching airplanes. rlooked but very focused. he wanted to know the purpose of the interview and i told him about the topic of the study he sounded very mterested he told me that he was just mterviewed by a person from the jewish bulletin newspaper, that lots of information is gj to in the article and that i should look into it. i did not want to tire him, so my questions followed whatever direction the conversation was leading us. there are a few art pieces on the walls. there is no clutter. i found out that his first wife died tragically in a fire that started from a cigarette she smoked in bed he was left with young children. i don’t know too many details about them. he remarried a musician and divorced several years ago. he stayed friendly with his ex-wife. as we were talking about l’chaim, i told him that michel and june would love to have friends come over. -ic was not sure he could tolerate michel’s talk and attiti . i told him that, in private, he is really delightful. lack was talking about opera be invited me to the next room to see his collection behmd the opr there werat leasc shelves, feet long, full of videos of operas, all labeled and organized meticulously on the wall was a poster of the tenors next to it was a poster of pierre trudeau, one of the prime ministers of canada i asked jack about it he answered that trudeau was the best politician in canada and that he admired him. we continued to talk for a little longer. jack was telling me how important l’chaim was for him, that he lost all zest for life and stayed motionless in his apartment until he came to l’chaim, where,with the help of the staff, he started tp enjoy life again his most important observation was that being treated likea person was crucial in hisw interviews with parncits at the l’haim centre figure : l.’chaim participants engaged in art activity i a consultation session. i __________ his financial advisor and a family member had just not meet them. jack planned it so i could be with him alone. i told him that i am finding it interesting that at least three men in our group are design-oriented and i wouldn’t have known that if i had not talked to them individually and seen their work. michel was a fashion designer and builder, jack was an aircraft designer and builder, avraham was a needlepoint artist, even though, according to him, he was a professional soldier in the israeli army. this led me to think about the next project far l ‘chaim. based on my deeper understanding of the participants in the study, i have decided to ask the participants to design their dream art studio/or creative expression activities. jack thought it was a great idea. he had a wonderful smile on his/bce and i could see his eyes sparkling. i think i have found a link to his passion — building. i parted from jack with a big hug and a kiss and a promise to see him again next monday. significance of interviewing participants at their home getting to know the person inside the condition finding clues that would attract the attention of the participant and make the activity program relevant for him allow the researcher to develop a better understanding and bonding with the participant encourage the sense of familiarity between the participant and the researcher meet relatives and friends that form the support group and gain more infornntion through them when the participant can no longer provide it see the participant in a home environment and look for differences in behaviour that may impact his or her participation at the centre tools for collecting data: a/r/tography field notes as the program developer, facilitator and researcher, i was the person responsible for the design and implementation of the program and assumed the role of participant/observer. i visited the two sites numerous times before the study began in an effort to get to know the staff, the directors and the physical environment. at the l’chaim centre i conducted a workshop for staff and volunteers. my intimate knowledge of the jewish faith and culture proved to be an asset that worked well for me and the participants. at margaret fulton centre the situation was different. i felt needed more time to become familiarized with the facility, its staff and operational procedures. for that reason, i volunteered at margaret fulton centre for several months before the study began and came to understand the multi cultural nature of this centre, with clients who came from different countries, faiths and races. my own recent brush with serious medical problems opened an emotional connection with the people i worked with and led me to a different level of understanding of the meaning of sickness; diminishing energy, of being dependent and needing help from family, caregivers and strangers; the desire to be counted and noticed as a person, to be helped but not pitied. i have developed a deeper understanding of the meaning of constant pain and its impact on our cognitive and emotional abilities and expression. the field notes provide insight into the various roles i assumed through intentional planning or through events as they arose. these field notes, written immediately after each session, deliberately separate the many roles that i assumed in this study. this exercise proved to be difficult at times, since the various roles happened concurrently. trying to establish when one role starts and another finishes was an artificial, analytical exercise. however, there was no other way to write simultaneously about all the roles at once. for example, if i could describe my roles through music, i could have assigned instruments to each role and played them all at once in an orchestra. however, since i am not a composer, writing must remain my tool for expression, with additional help from the visual arts as the study progresses. the colourful legend attached to each report was developed as the study progressed and as issues came up and evolved later into concepts and patterns. this coding continued to expand into other areas of the data collection and its analysis, through the field notes to transcribing the films. example at margaret fulton centre july ,, : hand massage session and the big walkout legend space issues, furniture, lights e-mails correspondence with staff any problem to pay attention to, such as behaviour, safety i i ask david about camera work and room layout researcher using knowledge from architecture i i a point to check again. ideas for future consideration present: dalia, david. seniors: lucia, margaret, elena, carol and betty. weather: transportation: my own vehicle. david came separately in his car. researcher state of my own mind: i was not worried about the session at all. i knew what i was going to do and i was ready for whatever would transpire. i am still sad that carmel left and i did feel her absence. in the last month she became a very important part of my work with the seniors with dementia. my physical and emotional state: i was ready and felt good. i have to admit that i feel more connected when i work with jewish elderly. there are so many things in common that need not be explained. the commonality of tradition, faith, the hebrew and yiddish languages, the familiarity and the nuances of similar mannerisms and sense of humour. i think that this kind of familiarity provides a sense of confidence, safety, warmth, soothing and embracing. perhaps it is a sense of knowing you belong somewhere. being an immigrant to canada myself, i am very much aware of the need to belong somewhere. that is why i try my best to integrate the two spanish-speaking women, elena and lucia, as much as possible, but not nearly as much as i would have liked to do if i knew how to speak spanish, or could have the support needed for them. preparation for the session: i decided to divide the group into two. the english-speaking women, carol, betty and margaret in one group and the spanish-speaking women, elena and lucia in the second group. i prepared one of my sessions on cosmetics, beauty treatment, hand massage, creams, lotions and smells. i brought with me lotions i bought in israel, products of the dead sea, small towels and manicure materials. i also selected background music from the tapes at the centre. educator/learner facilitator i and asked if i would consider having elena and lucia join the session. i told her i would need to think a little and that i would give her an answer in a few minutes. instead, i used a card table x feet, which presented a different kind of dynamic in the physical proximity between myself and each participant. i told maureen i will stay with the women. joan skeet arrived and asked if she could bring the women in. david and i agreed. joan arrived with the women and i could see right away that -n saying she had spent all morning in this room and would like to be outside. _________ but could help bring in the participants. carol was tlying to convince betty to join her. l a walk. margaret was in agreement that she joan was looking at me and waiting for a sign about what to do. i told h... women are free to do whatever they want and that it was more important to protect their right to control their own lives. joan took them out and i was talking to the camera and to david about what happened. as a reminder, at the last session all the women agreed when joan came back with the women, . i was glad that joan finally took her out. that was the right thing to do. however, betty was sitting down and joan urged her to stay. at this moment i let joan control who stays and who goes. the participants trusted her and liked her. and so, carol left, betty stayed and lucia and elena joined us as well. the situation called on my skills as a facilitator, my knowledge of ethics issues of people with cognitive impairment and their right to live in dignity. i felt i was equipped to handle the situation in an appropriate way and the courses i took on ethics issues in health care were very important. david stayed in his usual corner and filmed towards the windows. when i came into the room david had set up for the session today of massaging hands, where i needed to reach every participant. i thought the round table would have been the best choice i think i need to design a new table that would answer many needs and uses architectlartistlresearcher/facilitator — we settled for a card added a fifth chair for me. of the room with chairs around example at the l’chaim centre july , ; designing a studio for creative expression activities legend space issues, furniture, lights i i e-mails correspondence with staff any problem to pay attention to, such as behaviour, safety i i ask david about camera work and room layout researcher using knowledge from architecture lj a point to check again. ideas for future consideration present: debbie, dalia, david, june, volunteers. seniors: jack, ruth, tobi, irena, sonia, avram, harriet, sara, anita. weather: • transportation: my own vehicle. david came separately in his car. june came along to help. david and i went for lunch afterwards at enigma and out to ubc to take photos of ubc sites for our society’s web site. june went back home separately with my car. researcher state of my own mind: carmel left for ny and israel two days ago. it was a very emotional departure and painful. i was wondering how i would handle the situation if i was going to be asked if she had already left. the seniors showed a great deal of interest in carmel and her travel plans, especially her going to israel. my physical and emotional state: i was very relaxed and looking forward to the session today. i wanted to see what the seniors would come up with. preparation for the session: i called debbie at home and discussed my plans for today’s session. i told her i am going . i explained that i would conduct a discussion first of what a creative expression studio needs in general, and what it needs when it is designed for seniors. for various reasons. first, not all the participants have dementia. second, i felt there was no reason to make this point and embarrass or cause emotional stress to those who have dementia. i was interested in having their input in the planning and at the same time observe their abilities to express themselves. supplies for the session: b lead pencils, already sharpened with erasers on the pencil ends. it turned out that separate erasers that were heavier and bigger were better for the task. i also brought x -inch sketch paper, suitable for pencil and pen. the paper was acid-free and % recycled. i was not sure if the size of the sheets would be sufficient for the task; however, they turned out to be a good size. educator/learner facilitator this session was especially interesting for me as an educator, learner, facilitator and architect. i knew i was going to stretch to the limit the creative abilities of the participants. i knew this was going to be intense and would demand a great deal of focusing on the topic while utilizing planning abilities and then expressing them on paper. i knew that very few people have drafting skills. and yet, i wanted to give them the opportunity to be part of my work in a meaningful way. until today, i was the one in the leading role. today, i wanted to hear and learn from them. i knew i had to approach the session very carefully while creating an understanding about what i am looking for. i began by telling them that their input is important and may contribute to a better space for creative expression. i knew there would be a stage of self-doubt, of in something so new in a centre like this. i also tried to change my position in the room from standing to sitting. the seniors really liked it. jack said: you are now one of us and not like a leader. this was exactly what i wanted to portray. i finally managed to find a situation where i could tip the balance a bit and be on more ‘with them. this is a stri in all ii work with senior this awareness is actually at the forefront of my work with seniors, but it is not always possible to achieve: • any group of people waiting for a project to take place waits for instructions • some seniors with dementia are not any different from well seniors but they may need more encouragement, more appropriate information to work with, some guidance to make connections, and some patience on the facilitator’s part while the brain makes the connections that lead to expression. as the project progressed it was fascinating for me and the staff to see the level of involvement and expression that was demonstrated today it definitely validated my long-held observation that with appropriate approaches and challenges, seniors with dementia may rise to the occasion and reveal more óf:théfr blltiesthanpnviously deiflittrated. architect/artist this time i decided to turn the u-shaped orientation towards the windows. my intention was to create a visual buffer between the main entry and the participants sitting in the room. i located the wicker partition to block the main entry from the visual field. the notice board was wheeled in between the kitchen and the activity space. it was later wheeled out in front of the participants to display sheets from the extra flip chart. we knew that the seniors would be looking into the windows and into the light. we also knew that i would be seen only as a dark figure because of the light behind me. we were prepared to experiment with the existing lights, adding lights and changing the position of the window blinds. findings: . with the exception of one person, most seniors did not like the existing fluorescent lights. the complaint was that they were too bright and harsh. except one, most preferred the less harsh lights. . most liked a spotlight on me since it helped them see my face better. however, the participants wanted a spotlight with softer light. david inserted a filter that dropped the light by %. . most seniors, except one, liked the softer light from the ceiling even during their project. i think the white sheets on the table reflected enough light back. . we closed the window blinds that were close to the participants. they liked it better. . the notice board was in the dark and needed to be highlighted. we moved the spotlight that was on me to highlight the board. everybody agreed it was much better. . i noticed that no one paid attention to the main entry and that people who did come in left the room very quietly, once they realized that there was a session in progress. it was much easier for me to engage the participants in the activity and we were less exposed to interference. the session the session today was to program, plan and design a creative expression studio. this time the participants were the clients and the designers. we started with laying out the program, which focused on the activities and the needs of the users. debbie was writing down key thoughts that the seniors expressed. i was helping to direct and clarify what i was looking for. within the first hour we had a program. we also went into interior finishes, such as floor finishes, wood flooring, carpets, mirrors, colors, curtains and so on. all of the items can be reviewed on the video and on the sheets from the flip chart debbie worked on. we then proceeded to draw the spaces. i told the participants to ignore sizes and concentrate on how the spaces relate to each other and not to be afraid to write and explain the drawing. some people took to it and started to draw right away. tobi seemed to be very involved in the project and wanted blue, red and white to be the dominant colors in the studio. she also drew a swing in her studio. others wanted to participate in the project but asked for help in drafting the spaces, and so, together with the helpers, they came up with the space they wanted to see. jack and avram joined forces and collaborated on the project. anita was reluctant at the beginning but ended up with an elaborate drawing. michael was reluctant but with encouragement did manage to put down his thoughts. ruth worked with heather (a helper) and seemed to be enjoying it. harriet was right into it. sara enjoyed it and told me at the end that she was going straight from here to apply to an architectural school. i loved her sense of humour. sara had a helper too but was very instrumental in giving directions. debbie was working with tobi and went along with whatever tobi wanted. later, debbie said to me, “it was amazing to watch what was going on.” i told her, i was amazed too and results like these make all the effort worthwhile. figure : a senior with moderate dementia at the l’chaim centre designs her creative expression studio the analysis of self when interacting with seniors with dementia for the purpose of improving their architectural environments that would accommodate their cognitive and physical needs is an important part of understanding the world the seniors with dementia live in. the multiple roles of the researcher as an educator, facilitator, artist, architect and gerontologist are all intertwined. understanding the physical environment and its appropriateness calls on expertise from several disciplines. although it was difficult to separate the roles at times, it was a worthwhile exercise since it translated deep buried intuition into an awareness that later became a tool in designing spaces for seniors with dementia. for example, in interacting with the participants i realized, based on literature review and my own experience that the best distance for interacting with a person with dementia is within a radius of feet around them and at eye level. this observation has implications about what we can fit within this space. since it is so small, we need to think about where we position ourselves in relation to the participants: who or what should we bring into the circle with us? what activity would revive interest and how should we present it to be most effective? is one specific artistic style of presentation better than another? how far do we go as researchers in the sometimes elusive quest for meaningful change? figure : participants at l’chaim and margaret fulton centres significance of air/tography field notes and analysis air/tography helped bring issues to a new awareness. i did not always have answers to my questions but at least i was aware of them. a/r/tography is not so much about finding answers as being aware of questions in an ever evolving stage. in the process of interacting with seniors with dementia, i found out more about myself. it actually had therapeutic effects on me. it allowed me to discharge emotions and express myself in many ways. no boundaries were enforced on me, but the principles of ethics. david maclagan ( ), an artist, art therapist and a lecturer at the centre for psychotherapeutic studies, university of sheffield argues that “...where communication of various kinds between conscious and unconscious takes place, can in itself be therapeutic in this sense” (p. - ). so the wheels turned, i was there to help the seniors with dementia and found myself going along for the same ride. at times, the multiple roles got me into troubled relationships and misunderstandings as a demanding society called on me to define what was i exactly. was i an architect, was i an expert on dementia, was i a gerontologist? a/r/tography allowed me to be a person who was sensitive to issues those experts were concerned with. the biggest question is how to translate this theoretical approach to life to the practical world outside of academia? figure : participants at the l’chaim centre engaged in music activity tools for collecting data: filming i chose to film the creative activity sessions with the participants in order to free my attention so i could concentrate on interacting with them, while at the same time making a complete record of their behaviour and mine in the spaces selected for the activities. filming allowed repeatable analysis of the physical environment and documented the use of space and circulation. filming also helped focus my attention to details that escaped my mind. when events are seen from another angle, we have additional ways of understanding. filming produced a rich source of information in a relatively short time without having to subject the participants to prolonged experimental situations. according to ranneskog, asplund, kihlgren, & norberg, ( ), video recording of music activities with seniors with dementia allowed the researchers to focus on facial expression without having to interfere or get too close to the participants. it also allowed repeated examinations of the raw material until reasonable interpretation of the event was achieved without having to go back and bother the participants again. david l brown, who has collaborated in producing videos on my work with seniors, is the videographer. over the last two years, david and i have learned much about filming seniors with dementia in their environment. david is familiar with my interest in specific behaviours or reactions expressed by the seniors. together, we try to catch on- camera behaviours we would like to revisit and try to understand. david has given me a rare opportunity to stay engaged with the seniors as a facilitator, and still have a say in the. we used two cameras: one camera was stationary with a wide angle lens, while the other moved and focused on details as they occurred. the videos were analyzed for behavioural patterns, verbal and non verbal responses to the sessions as they were conducted in different spaces. i opted not to use a software program for video analysis since the number of participants was relatively small and manageable. i also enjoyed aesthetically the method i selected to color code similar ideas, events and behaviours into patterns that carried not only textual information but also fed my artistic curiosity about using the arts in the service of science. we considered several sites before selecting the two for this study. being able to film the sessions was a factor in selecting a potential site. we spent several hours analyzing the sunlight as it traveled through the spaces where the activities would take place. we decided that the comfort and wellbeing of the seniors would take precedence over the needs of the camera; the camera work would need to adjust to furniture positioning, direction of natural and artificial light needed for the seniors’ art activity and where i positioned myself as a facilitator with access to each participant. we decided that we would not stage the site nor the participants to accommodate the camera. at margaret fulton centre, i drew on my experience as an architect as we imagined the movement of participants around the room, the location of the media equipment, the sunlight, whether to bring or not to bring the outside view into the room, how to manipulate the blinds, the proximity of my position in relation to each area, and my access to each potential participant. we considered the furniture arrangement as the participants entered the space, as they would relate to each other as a group and their ability to concentrate on the task in front of them. all this was done in preparation for site selection and for camera positioning. these preparations could not take place when participants were around. no clients of the centres were present at these preliminary investigations. figure : david l brown, the videographer, sets up the cameras at the l’chaim centre as the study progressed, we analyzed the videos in preparation for the next session and made some changes, for instance, to the furniture arrangements in both centres. we obtained floor plans from the director at the l’chaim centre, and directly from the architect of margaret fulton centre. the locations of the cameras in relation to windows, doors, media centre, music equipment, kitchenette, chairs, tables, side tables, sofas, plants, lights, fmishes such as wall paints, fabric, floor covering, ceiling covering, were all documented and are included in the attached architectural drawings of the two centres. other crucial aspects such as visual access or lack of it to the outdoors and whether environmental features have an institutional or residential character were noted in the filming. the example at the end of this chapter shows the method used to analyze each of the videos. all videos were transcribed and color coded for emerging patterns that revealed creative expression abilities and social behavioral in the various manipulations of space, furniture and to a certain degree changes in the quality of light too. in addition to the textual analysis, we observed each video several times, looking for information that was not apparent in the transcript, but could be observed visually, such as body language. with no sound, it was easier to pick up behavior that occurred outside of my sight during the activities and pinpoint details that did not seem important at the time but later took on a significant meaning. one particular behavior that stood out and would have been lost if the camera had not picked it up was this. as one participant got up and headed to the washroom, i moved in to the empty space to help her neighbor. what i did not realize when the participant returned was that she did not want to bother me and, therefore, wondered away. it all happened when my back was turned, while i was totally absorbed in helping another participant. later i decided the awkward furniture arrangement interfered with my ability to control the entire room. in this example, the letters lc stand for l’chaim adult day care centre. color coding was layered on the top of the transcription for analysis. the analysis allowed an intentional search for significant clips that were condensed to a short dvd presentation. the dvd is attached to this study. tools for collecting data: the inteiventlon — the creative expression activities program in my program the ability for creative expression is demonstrated in artwork, writing poems, dancing, music, singing, story telling, reminiscence, cooking, flower arrangements, designing spaces, visiting galleries and commenting on artwork, and holding varied discussions. this program is based on a multi faceted approach with input from several disciplines: nursing, psychology, social work, education, architecture and various forms of the arts; dance, music, painting and writing. this approach to creative expression activities is based on understanding dementia as a disease, using the seniors’ remaining cognitive and physical abilities to integrate their past into the present social context. this program uses a personal approach as the main key to unlock barriers, build trust and use our automatic reaction to what is familiar even when our ability to remember diminishes. its goal is to encourage caring communication with all seniors. only when we learn about our seniors’ past life, respect that world and treat the person with dignity, can we start to have an impact on their cognitive ability and provide access to creative and social abilities. timeframe for the sessions although i preferred conducting the sessions between and in the morning when the participants arrive right after breakfast and are ready for activities, i realized that we needed to fit into the centres’ figure : turning the u table around with the opening towards the windows existing schedule in order to cause the least disruption. at the l’chaim centre we were able to maintain a morning schedule, right after the arrival of the participants at the centre. however, at margaret fulton we had to fit in with the centre’s schedule and our sessions were planned immediately after lunch around : pm. both times raised some problems. at l’chaim centre, we had to wait for the seniors to arrive by special bus, which was sometimes very late and could affect the centre’s entire schedule for the rest of the day. in turn, this put pressure on us to finish our sessions at the scheduled time or even before that, so the seniors could get ready for lunch and staff could clear the tables and prepare to serve lunch. the afternoon sessions at margaret fulton centre presented other problems. right after lunch, the seniors wanted to go for a walk, especially if the weather was nice outside. some seniors already displayed anxiety in anticipation for the : pm departure. overall, the sessions went smoothly and as we learned more about the centres, the participants and staff, we managed to overcome most problems. selected sessions from the creative expression activities program two sessions were initially selected for this study (appendix c). the first, on friendship, presented a topic that has been well received by seniors with dementia and demonstrated in numerous workshops in canada and the u.s. it involves a discussion, poetry writing and artwork. the second session, on music, presented segments from well known and loved composers, played by musicians. the sessions ended with dancing and painting to the music. each session lasted anywhere from to minutes. the seniors participated once a week. initially it was planned that the same group of seniors would experience two sessions on friendship and two of live music, in two different spaces in two repeated rounds. however, as the study progressed, changes were made along the way to reflect participants’ needs, wants and the centres scheduling. i made changes to parts of the selected activities to adjust to the spaces and to the span of attention of the seniors on that day. since the focus of this study was on the architectural environment, i felt ethically obliged to provide the best i could to keep the seniors engaged and benefiting from the intervention. in addition, at the ’chaim centre, we held seven sessions instead of the original four and so topics were added that included participants’ requests and activities i was looking to explore to strengthen this inquiry. observed everyday creativity a number of creative expression activities were observed based on the definition of everyday creativity in the literature. everyday creativity manifests itself in being curious, in an ongoing process of self-evaluation and personal growth. creative expression was observed in the following behaviours: ( ) sensory expression, including (a) visual and (b) verbal expression, and ( ) social interaction. these behaviours were observed and identified on the various forms of data collection: field notes, filming and direct observation. the level of response and the need for assistance: ( ) independent response, ( ) partial assistance and ( ) total assistance, was also observed. however, a systematic observation that would employ quantitative measurements was not included in this study. sensoiy expression. there were occurrences of sensory expression or lack of it that included: (a) use of colour combinations; interesting interplay between the intensity and the hues (did not materialize in this study due to lack of time, equipment and personnel), (b) appropriate use of image and colour to fit expected norms (i.e. a piano is drawn in black with appropriate shape), (c) correlation between verbal expression and the targeted task (designing an art studio that included an easel), (d) awareness of the visual interpretation of an image and colour that do not follow expected norms, (i.e. the senior is aware of the departure from imitating real life objects), (e) the kind of explanation accompanying the visual activity, with emphasis on verbal expression; using humour, life lessons, unusual twists to the story, and (f) listening to music and making connections to life stories (i.e. this music reminds me of the good old times when we did not have television, and radio and live bands were the main source of entertainment). social interaction. social interaction was observed in the occurrence or non-occurrence of certain behaviours, such as: (a) sharing and expressing feelings (i.e. he sure went through hell, or i know what you are talking about), (b) giving compliments or criticizing (i.e. you look really good today, or why is she talking so much), (c) smiling or laughing, (d) making eye contact with the speaker, (e) asking a question or leaning over to conduct a private talk, (f) touching or patting, (g) being upset, angry, agitated (i.e. insulting others, not being able to stay seated, getting up to leave in the middle of a session without explanation, shuffling objects for no reason, bad mood). at the end of each session, participants were asked briefly for their thoughts regarding their experience in the session. staff and families evaluated the social validity of intervention goals, procedures and outcomes by electronic mail through casual correspondence. no systematic follow up was conducted after each session to see whether staff and families observed any changes in the behaviour of the seniors with dementia outside the designated space. however, information was gathered through casual conversation with caregivers, families and the participants themselves wherever relevant and appropriate. future idea to be explored would be whether or not there are long-lasting changes in behaviour beyond the walls of the designated spaces for arts activity. the creative expression activities were planned to take place once a week with each group, in each daycare facility. each session was planned to last for minutes, depending on the energy level of the engaging in creative expression activities figure : participants at l’chaim centre participants, their interest level and their health at the time. it began with minutes of socializing, serving coffee, tea and baked goods while discussion on any subject was encouraged. next was a prepared activity lasting about minutes. it included a display of relevant materials. discussion was encouraged to draw on the seniors’ own experiences. following the discussion an activity of about - minutes was introduced. free discussion usually continues and takes on the flavour of the moment. ten minutes before the session was over, i started to indicate that the session was coming to a close and pointed out that lunch was about to be served in the dining room. the two topics selected for the intervention were used in several long- term care facilities and successfully drew out various reactions from seniors with dementia. however, since several more sessions were added at the lchaim centre, more topics were added to avoid repetition. the first topic on friendship included a discussion on various types of friendship, drawing on the seniors’ past and present experiences. the last five minutes of the movie “casablanca” was played, demonstrating how a new level of friendship was struck between the french policeman and the nightclub owner. an activity of poem writing followed the discussion and the movie clip. key words on the topic of friendship were called out by the seniors and were written on a flip chart of ” x ” paper. as the sheets of paper filled up, they were displayed side by side at the eye level of the seniors. a new sheet of paper was then displayed on the easel to further develop the poem into sentences. i read the words aloud as sentences were called out. the group needed to agree and approve of the fmal product. all suggestions were considered and an effort was made to incorporate even awkward key words. a sense of humour was significantly employed. the movie “casablanca” was replaced by the “king and i” for the l’chaim adult day care centre to protect seniors who were holocaust survivors. the change was made to reduce stress or avoid bringing back unpleasant memories. a second topic consisted of listening to music, dancing to music, playing to music, painting to music and reminiscing about the time the music was composed. there were no restrictions but the seniors’ own creative expression. tools for collecting data: space diagrams in addition to field notes, interviews, and filming, i documented the existing conditions of furniture layout, location of partitions, participants, staff and various equipment, such as tv screens, aquariums, cameras and musical instruments. each drawing is representative of a specific situation. it also indicates areas of problems such as inadequate space or glare from a window. these drawings are an important part of the analysis of space. they present the existing space, suggested changes and design resolutions. they appear in chapter for the purpose of clarity and flow in that discussion. figure : presentation board separating the main activity room from the kitchen area at l’chaim centre example of video transcript and analysis documents an intervention session where the ideal studio was discussed. lc-session # - tape . designing a creative expression studio and experimenting with light in the space. legend i. i i i i needs hebrew translations from the video and inserted into the transcriptions. dalia sharing personal information participants sharing life stories. reminiscing. participants’ acknowledging memory problems memory issues and repeated questions space issues socializing participants evaluating/commenting on today’s session participants enjoying music and the session non-english words (n-ew’s) staff interfering with activity stty show this in a clip ideas for future sessions participants showing interest in the art supplies : : : (number indicates time code inserted in the video) setting up the session : : : sonia is arriving sonia: if you are smiling everything is good memory issues. dalia: i came to see you but you were not home. sonia: someone died in my building and all the people went to the funeral in a big bus. dalia: i had to call the manager because i was worried. the manager opened your apartment...l was glad you were not there... sonla: thanks god. dalia: thanks god (in yiddish) dalia: do you want to take off your coat? what do you think? maybe you want to find a place to sit? so many choices. difficult to decide. sofia: nobody is sitting there. dalia: then you don’t have to : : : dalia: you are the first so you can pick the best seat. sonia: if i need two, i can take two dalia: yeah. sonia: laughing dalia helping sofia to take her coat off. dalia: sofia you are dressed so hot sonia: as if it was minus outside dalia: this is cute a little pin in the background heather, a volunteer is preparing the name tags for the participants. sonia wants her scarf back after she took her coat off. dalia is arranging it for her. dalia: you can go and sit wherever you want my darling (talking to sofia) dalia is talking to staff member about her weight loss and her diet. carmel left to ny and israel. : : : dalia: hello irena ira: in hebrew, i don’t have any energy dalia: trying to translate from hebrew to yiddish for sonia dalia: it is hot but not like in israel. ira: almost dalia: ira do you speak yiddish ira: i understand all, but all my languages are mixed now daha: sonia said she can hear everything but does not understand sofia: where is your daughter? dalia: she left (in yiddish) on saturday. she is in ny for few days and then to tel aviv. it is difficult saying good bye. ira: what is she going to do there? learn music? dalia: no, international relations : : : jack is arriving. dalia: hello jack, come on in, where would you like to sit? dalla: hello harriet. harriet: i am doing fine (goes to her seat and walking with her walker) dalia: jack, do you need any help? jack: my box is right over there dalia: harriet, where do you want to sit? here or there? space issues. : : : harriet; let me sit over there, then i can see everything that is happening. (facing the room and the kitchen) dalia: just be careful there. (dalia is moving a chair and pointing to something on the floor) dana: sit here and i will push the chair under your tush. : : : space issue. (light from windows) dalia to david: i can tell you right now that the light from the windows is really bright. we will see how the reaction will be. dalia: jack, are you going to sit beside harriet? dalia: this is a good couple. (laughing) jack: how is your beautiful daughter doing? i guess she is doing her own thing. space issue. harriet is waving to debbie who walked in. debbie: good morning use this clip. : : : dalia’s thoughts. debbie is checking the radio for background music. i remember very vividly how this insignificant act hurt me, realizing i will not have carmel there to work with me. today, or never perhaps. an era came to an end. dalia: i like your sandals : : : space issues. david is adjusting the lights that will focus on me. dalia: sofia we have to go to the table (in yiddish). dalia: hello, good morning jack and harriet are having fun and pointing at something. avrahm arrives. dalla: good morning avrahm: good morning in hebrew. i thought you would call me and visit me. dalia: my daughter left and all weekend it was very busy. avrahm: i can imagine dalia: i have already been to some people avrahm: i know dalla: how do you know? avrahm: i come here, no? dalia: if you want i can plan it with you right now avraham: best time is thursday, whenever you want dalia is going over to get her daytimer. sonia is coming to the table and selecting a seat. avrham brings some magazines to harriet and jack. and goes over to dalia to set a time. dalia: i will give you a note to remind you of my visit avrahm: i don’t need a note. i will remember. sonia is still looking for a seat. av. is sitting next to jack. av: for how long will you need me? dalia: for an hour av: let’s decide on thursday at : am sonia goes over to jack to get her name tag. : : : ira arrives and sits down at the table sonia is talking to jack and jack in the corner. sonia, sees ira and brings her her name tag sonia is not sitting down yet. socia’ sonia is going around and decides to sit next to harriet not next to ira. samantha is serving coffee to the participants. dalia would like to have some coffee too. av: where is carmel living in israel? dalia: carmel right now in ny. in tel-aviv in the dormitories. dalia is telling about the bad conditions of the dormitories... the old nurse pauline is back. sheila the other nurse is gone. av and dalia are talking about carmel in israel. dalia: today we have a special project. Ày: today i came on purpose early dalia: did you come because of me? av: yes dalia: i am honored dalia introduces herself to pauline. : : : anita is arriving samantha and dalia are discussing her going to ny in about a week. dalia: ira do you want more coffee? ira: no anita telling dalia about an amazing wedding she went to during the weekend. describes many details down to flower arrangements. debbie is joining the group and sits down next to sonia. : : : toby is arriving dalia: toby where do you want to sit? dalia: where is michel and june? are they coming? shall i start? : : : session begins late dalia: this is our group today dalia sharing personal stories. dalia: this is my sister-in-law. she helps me and i am married to her brother. and now that my daughter is gone to israel, i need all the support i can get. anita: my grandchild is coming from israel i can send hin to you dalia: no thanks dalia: toby and irena, i will bring you here (points at two seats next to sonia) dalia: so you are closer socializing av: toby did you come alone in the car toby: i came with jerry dalla: we are going to be a smaller group today, but that is ok. that means you will get more attention from me. dalia: can i take those books? sorry, i feel like i am in a classroom. debbie: jack you are wearing a very smart shirt today dalia: jack you are getting lots of complements today. i like the color too. : : : ruth arrives space issues. : : : dalia: since we are a smaller group i will bring the table closer. jack is busy finding harriet’s name tag. debbie is coming to take the box. dalia: today is a special day. too bad we don’t have more people. anita: today is national ice cream day. dalia: anita did you think i would serve ice cream this morning? anita: why not? space issues. dalia is sitting on the table. : : : space issues. dalia: what we did today we rearranged the furniture again. this time you are looking towards the windows. does it bother you? anita: through the windows debbie: to the window dalia: you are facing the windows anita: there are windows there too (pointing to the far end windows) space issues. light issue. dalia: does the light of the windows bother you? anita: not right now but eventually it will, since the sun goes around. dalia: so what can we do to prevent the glare? toby: you put the blinds down toby: you don’t have to do right now, but when it comes around... dalia: right, right : : : dalia sharing personal stories. dalia: what i am finding, since i have problems with my eyes... this for instance is too bright for me (pointing to the light mounted on a pole) as if i need a hat or sunglasses. debbie gets up and changes the lights. she uses a dimmer and reduces the intensity of the lights. dalia: david, can you still see us? debbie: this is how the lights used to be in l’chaim. dma read an interesting article on lighting and apparently you can see better with brighter light dalia: lets vote which light is better. i am just thinking. i need your honest opinion. don’t worry about criticism, you are helping me design the right environment. debbie is turning the lights brighter and dimmer. harriet: i like it dimmed. absolutely. dalia: who likes it dimmer? av, jack, harriet and toby like it dimmed. anita likes it brighter. ruth and sonia are not responding. dalia: what we are going to do today came out from a conversation with jack in his apartment. it occurred to me that we can design tighter a perfect art studio. the perfect place we can do whatever we want. don’t worry about money. let’s say we have a sponsor that will give us all the money in the world. debbie: jimmy paterson who will give us the money to design creative expression studio. : : : dalia sharing experiences. dalia: telling her story how she saw patterson the other day buying ice cream at baskin & robin’s. debbie: money is no object dalia: this is a wonderful exercise. debbie i am going to need you to write. i am an architect. i design spaces, i talk to people i learn what they need and what they want and then i put it in a drawing. we are going to become architects today. each one of us will get a paper, pencils, a ruler, crayons, and if you want to do it in free hand, i don’t care. if you have a problem, we will work with you. i want you to write down your thoughts, and so on. and now we are going to start. i will tell you what i want and what i need. you are my clients. i am interviewing each one of you. so now let’s pretend. jim paterson is asking us to design the most incredible art studio and we will call it creative expression studio. dalia: when we say art studio we all think about what? space issue. daha: but when we say creative expression studio, what do you think we mean? anita: i am already designing a bedroom that i would like to see. dalia: i will stop you right there. anita: why dalia: we were commissioned by jim paterson to design an art studio, creative expression studio. anita: an art studio dalia: so you think about it dalia asking av: what do you think is happening in a creative expression studio? dalla: what would you like happening for you in a creative expression studio? av: i cannot think creativity dalia: let’s start with art. what is art. av: pictures daha: do you want to display them, or make them or both? av: make them dalia: and what action? toby: if i tell you you will know what it is dalia: ok debbie asking av: do you want to draw a space. does the space need to be suitable to learn how to draw the pictures? av: not to learn, i design the pictures, like the exhibition here, but not abstract. anita is touching jack liking his answer. dalia: i want to ask you. think about it. the breakthrough in the discussion dalla asking av: think as a painter. what will you need as a painter. what will make you happy as a painter? av: i need the paints. dalia: ok. what else? anita: he needs an easel and he needs brushes. av: and a very good light ruth: north light, the right light anita: cleanser for the brushes jack: paints anita: canvas dalia: are you going to be standing or sitting? anita: sitting av: standing dalia: you are about . how long can you stand? av: no, sitting. even now i am sitting : : : michael is arriving dalia: we need chairs to sit. you can stand too. dalla: we are designing the most perfect creative expression studio. think about yourself as an artist and what you need around you. dalla: now, this is for painting. what if we do if we work with clay? jack: we need clay. dalia: we need sculpturing tools. did any of you sculpture in clay? what do we need? michael: pottery dalia: a turning wheel michael: sometimes you need a turning wheel and sometime not dalia: what do we put on the clay when we turn it around? anita: water dalia: how will we get the water? anita: from a sink dalia: we need a sink, right av: if we talk about a sink, we will need a washroom dalia: fantastic. we will need a washroom dalia: why do we need a washroom close by? av: wash the hands and go pipi dalia: do we need a washroom far away or close by? space issue. agreement around the table it needs to be close by. anita: to take care of our bodies dalia: when we have a problem walking we need it close by, right? anita: absolutely dalia: what else do we need in a studio? anita: you need someone to model for you dalia: debbie write it down. dalia: like? av: needle work dalia; what do we need for needle work? av: a frame anita: needles anita: and threads av: magnifying glass dalia: what about light? av: there is light in the magnifying glasses daha: i need to see what you are doing (pointing at av) do you have it at home? av: yes. dalia is giving her a five. harriet: acting and dancing. those are creative expression. dalia: what do we need for dancing? harriet: a body that can dance av: and younger legs dalia: let’s say god came from heaven and said, i will make you younger and you have all the money in the world, what will you need in a dance studio? av: good hearts anita: toe shoes michael: music anita: we need bars debbie: she means ballet dalia: that is ok av: i look at dance competition. very nice. av: are you coming next monday (asking dalia) jack is leaning over and talks to sonia dalia: what do you need to see in a dancing studio? av: girls anita: men dalia: men who are beautiful dancers. space issue. dalia: think about the environment itself. i am an architect and you are helping me. anita: a park, a large area for dancing and a teacher debbie: mirrors michael: a bar av: no no dalia: he is talking about a drinking bar dalia: i am doing it for elderly people. anita: this is hysterical anita: they get no satisfaction from that. dalia: is that true? debbie: people i have danced with in their chairs had big huge smiles on their face anita: iget out of breath. lam a good dancer. dalia: if you happened to be in a chair, i can dance with you. trust me, you will enjoy it. : : : anita is shaking her head in disagreement. dalia: asking the group. why do you think people in their chairs can still enjoy dancing? harriet: movement dalia: what else can they do? harriet: they can sing. jack: they can participate and be part of it anita: you cannot do it in a chair debbie: you are thinking about ballet. dalia: sits down on the table and demonstrates a plie (a ballet position) av: if i do a plie, i will get a cramp in my legs socializing. everybody is laughing dalia: i did not finish yet with the dancing. what kind of air we need? av: we need air condition dalia: to stay alive socializing. toby is laughing hard in the background dalia: what colors would you like to see on the walls? av: when you are talking i see in my imagination them dancing. it is very nice jack: pastel colors debbie: we will have to design two studios dalia: yes. or we will do one month like this and one month like that debbie: there must be studies done which colors are best for studios. is it quiet colors like av or colorslike toby is saying? dalia: if it is a night club we don’t see anything. what we see is sweat. av: we need good deodorant space issue. anita: we need a shower dalia: this is good thinking, even though it is outrageous. wouldn’t it be nice if we could go and take aquick shower and refresh ourselves? i like that. anita: absolutely dalia: how practical do we have to be? in a room like that where we do all the creative expression. thinkabout the cleaning. if we do any sculptures with water and clay, we have to worry about how to keep theplace clean, right? what floor shall we use? av: use abc dalia: abc? dalia: can you dance on carpet? anita: you can not dance on carpet. dalia getting up and saying hello to sara dalia: we cannot work on carpet. why? anita: it sticks toby: you might trip on it dalia: what else? dalia briefing sara as to the topic of the session. designing the most beautiful creative expression studiowhich is like an art studio. money is not an issue. i am the architect and you are all my clients and you aretelling me (dalia is helping sara with the chair as she sits down to join the group) what i need to thinkabout. so lets vote here. what floor will accommodate most of our activities: space issue. anita: wood floor dalia: wood floor with a good varnish. anita: varitan, so you can wipe it with a damp mop sara is nodding her head in agreement dalia is going back to sit on the table dalla: ruth what do you think? a wood floor or a carpet? ruth: i just put down a wood floor. dalia: so let’s vote. who wants carpet and who wants wood. anita, av, jack, harriet, toby, michael and sara are voting for wood. ruth: you said wood. you need to raise your hand. dalia: what about you sofia? sonia: wood dalia: the people have spoken. socializing. laughs around the table. anita: laughing hard. you are adorable. sara: this is what they said when they hang marie antoinette dalia: no. they used the guillotine. this is a horrible death. at least it is fast. dalia: what do you think? think about this beautiful room we just came up with? dalia: what do we need for acting? av: a stage jack: a podium anita: you need a place for books dalia: a library? anita: yes dalia: a collection of plays to get ideas from anita: yes, yes dalia: what else do we need? av: we need a play writer dalia: walking over to sonia. sonia, what do we need when all the actors come together? sara: a studio dalia: we need to know what we need inside the studio dalia goes over to michael and takes the magazine away. anita: you need a microphone. dalia: michael, you are here to use your brain and you are going to work really hard and use it. dalia: michael, what do we need in a place people act? anita: costumes michael: stage director dalia: approaching irena for her opinion. irena answers: i don’t understand a thing (in hebrew) dalia translates it for her. dalia turns to the group asking for time to explain irena what was going on. everybody is listening. there is some joking going around with harriet and jack, anita and debbie. lrena:l was an actor av: we need something more important. he demonstrated a fire extinguisher. sonia: we need mirrors av: big sign smoking forbidden socializing. many are laughing around the table. sonia and ruth do not laugh sara: we need a director anita: we need the man who puts up the money. dalia: we need sponsors for the shows. right. dalia: what about the environment? michael: make-up artists socializing. sonia: debbie has something to say debbie: stage lighting dalia: if we want to change the stage all the time, who do we need? michael: stage hands jack: manager dalia: what else space issue. anita: a moving stage dalia: that is good dalla: does every play or show has the same decoration? so what do we need? anita: no michael: scenery anita: different sets dalia: who does those set? jack: set designer dalia: oy yo yo. finally dalia is going around to give five to the participants. when she approaches sonia, sonia says: zi gizent (in yiddish) for health. toby raises her hand to sake with dalia. debbie comes over to dalia: debbie: give me ten. dalia: give me a hug. i have to be nice since she is my future in-law sonia: ten plus ten.. .the rest of the sentence is not understood debbie: when carmel comes from israel we.... dalia: when carmel comes back she probably will be pounds eating too many shuharmas and too many falafels. dalia: i think we are missing several more things in this wonderful studio of ours dalla: what do we need for signing? sonia: singing in the rain sara: microphone anita: piano jack: curtains socializing. lots of talking around the table daha: that was good, we need curtains anita: someone who can sing dalia is laughing anita: we need debbie (ref to debbie’s singing) dalia: when they sing are they accompanied by someone? anita: sometimes there is a whole orchestra : : : dalia: what we did so far are very active activities, let’s think now about passive activities when we do nothing but... dalia pointing at her eyes and says: what are we doing? av: we are observing jack: we are watching jack: we are projecting dalia: that is good too dalia: and when we do observe what will be a situation when we watch quietly anita: when you are rehearsing dalia: that means we need a place for audience dalia: you are getting better as time passes memory issue. dalia losses her train of thoughts. debbie reminds her the discussion was on observing. : : : - : dalia: a passive way being very creative. we don’t always have to sing or dance. i know many ways how i could be very creative without saying even one word. dalia: one of the creative expression activities is writing. dalia goes over to anita and asks for five. dalia walks over to ira to explain her in hebrew what is going on. dalia: this is what i am trying to do with the people here. i can be very creative in my mind. anita: if you are reading a script and you watch how they perform... debbie: we are talking about reading as creative expression, not performing av: you are saying in your mind, you know, if i am sifting in the park and i am dreaming that i won a million dollars so i am very creative : : : dalla: right. so creativity can also happen in our brain without singing, dancing. i need to be clearer here a little more, we went from very creative expression showing our feelings and interacting with others but there are times we can be very creative and we don’t have to do all of that. : : : . dalia: when is it happening to you? av: when i go to israel i make a list of what) need to take. i am in making lists dalia: creative in making lists and planning ruth: when you are dalia misunderstands. ruth points to her head. others are helping out. dana: playing is very creative dalia: do you mean playing cards, scrabbles? : : : to be used in clip. sara: nods her head in agreement dalia walks over to anita to give her five and says: i love that anita: i love you dalia: thank you i love you too debbie: when you read a book you imagine the characters how they look like anita says something. space issue. : : : use for a clip dalia is trying to go back and sit on the table. the table is on wheels and keeps moving. she apologizes to sara who sits close to the table. dalia moves the table away and goes to get a chair. debbie moves the table away. dalia sits down. av: you are creative dalia: i am now one of you guys. this is nice anita: isn’t lovely dalia: so i have a question for you. anita leans forward and says: what? space issue. dana: don’t think about me think about you. would you rather see me sit or stand? anita: i rather would like to see you happy. it does matter if you sit or stand, it is still you. dalia: this is a very good and diplomatic answer. what i need... dalia: am i too low for you or you would rather see me standing sara: i am more comfortable if you are sitting down michael: yes o ; : :o dalia: standing up again and demonstrates: you don’t feel like i am presiding over you, right? anita: it does not matter dalia: what do you think jack? jack: directors sit down, don’t they and they direct everything. they don’t stand up on the stage dalia: so i feel very comfortable. are you comfortable with me? harriet, sonia, toby are shaking their heads in agreement. : : : clip use. jack: if you are standing you are considered the leader, when you are sitting you are one of us dalia: thank you very much dalia getting up to shake jack’s hand av: most of the times the director sits higher than the people and he is talking from up (and he points down) dalia: you know what, i am very much aware of it. i would rather sit when i talk and then i feel like one of you. dalia: debbie you may want to write down that the leader should sit down, because i feel like i am riding you all the time. the participants disagree with the last statement of dalia. dalia: debbie you are now our leader. write down it is a psychological aspect. finally i feel like i am more relaxed. anita and debbie are talking in the background. use for clip. : : : dalia: so what do i need in this studio? we did not talk about fresh air. think about the walls of this perfect room of ours. do you want it to have contact with the outside? anita: i want windows av: when saturday and sundays come along all the walls fall on old people. dalia: what do you mean by that? v you are lonely you are sitting at home and the walls surround you dalia: are we talking about creative expression studio at your house or a studio for all of us right here? av: for all of us. dalia: anita says she wants windows space issue. anita: you know what, windows can be anywhere depending on how the building is constructed. dalia: right anita: there are windows around the ceiling, there are around the room, whichever dalia; are you talking about eye contact? anita: no, i am talking about breathing dalia: ok. what if i bring air from the ceiling, do we still need windows? : : : clip. space issue. av: it is important to have a window with a nice view. dana: anita says the windows are not that important as long as we have fresh air. this is one opinion. for av a window with a view is very important. av: when i lived in west vancouver i had a window with a one million dollar view. the sea... the trees. clip. space issue. jack: the sound of the acoustics are very important in a studio dalia walking over to jack for another hand shake. dalia: sound and acoustics very important. anita: absolutely dalia: what about windows? jack: if you are talking about audience you need darkness. jack: for the studio we need windows daha: he is talking about two scenarios. for the audience we need darkness since they need to concentrate on the activity, for a studio we do need windows. harriet: obviously we need two separate places. a studio with windows and a auditorium with a stage. dalia: i can drop shutters on the windows and in a few seconds it becomes an auditorium. with a press of a button we can do it. money is not an object, we can be flexible. anita: shades can transform... michael’s cell phone is ringing. debbie is asking him to take it in the corridor so as not to disturb the session. dalia: we need decorations that will transform our thoughts and allow us to get lost in it. right? it is very important. space issue. clip use. : : : dalia: we came to the conclusion that we do need a very flexible creative expression studio. sara nodes her head in agreement. dalia; because we have different needs to answer all kinds of activities. dalia: but i am still waiting to hear what else can we watch, not a play. av: a concert, a ballet sara: a movie dalia is getting up to give her a hug and a kiss jack: how could we forget it av: a movie you can see in on the tv. dalia: we need a television too. what else? debbie: a popcorn machine there is laugh around the table debbie: otherwise i am not coming to your movie. harriet: how many of us can chew popcorn? lots of laugh around the table. toby thinks it is very funny. dalia: what do we need when we watch a movie? av: we need a screen michael: to sleep (perhaps he meant a seat) debbie: comfortable chairs space issue. sara: acoustic system dalia: a sound system dalia: what else do we need when we watch a movie? anita: patience heather the caregiver is walking in. dalia: if the film is too boring, what do we fell like doing? anita and av: walking out dalla: so if we walk out what do we need to be safe when we walk out? anita: a flashlight or light along the wall daha: so picture it, the movie is terribly boring. we are walking out. where are we walking out to? : : : memory issues. anita: the hall which is a part of our studio dalia is getting up to shake anita’s hand. dalia: did we forget anything? sara: somehow we have a building and assuming we have the walls. we need seating dalia: we are all old people. we are walking with our walkers and our chairs, we are not that steady on our feet. what do we need in terms of space wise? someone said space. dalia: so we need space for circulation dalia: lets see if two people walk side by side, do you think there is enough space to walk behind (and she points out the space between the table and the wall) is there room to walk safely without tripping over? dalia: so what do we need? av, anita: room dalia: so we need room for circulation, right? how many times you walk with your cane and if you are not watching you may trip over? anita: lots of times : : : clip use. debbie: not at l’chaim. we are always aware of properly placed furniture. dalia: for that we need lots of room, right? lots of room. dalia: lets continue before sara falls asleep sara: i am not falling asleep dalia: you were thinking about what we were talking debbie: are we not going to eat ever in this place? anita: we are not going to eat there while all this is going on socializing. toby is talking to sonia in the background and pointing to sara or to dalia. sonia responds but the camera could not pick up the conversation. debbie: maybe we will not eat in the creative expression studio. when the activities are finished we will go out for lunch. dalia: or av: we will go to macdonalds toby: i would say beer debbie: let’s say apple juice dalia: to be freilach (happy in yiddish) sara: i understand what freilach means, but i cannot see what beer has to do with what we are doing dalia: we have to honor the input of everyone and go along with it sara: i understand that. i guess we will anita: you don’t have to drink if you don’t want it : : : sara: there is a good point dalia is laughing. dalia: so we already have this wonderful place. we have everything. only one thing is missing which can be very creative. cooking. av: ha, cooking? giggling around the table. av is reacting and says something which is misunderstood. dalia: we have to think how the colors look on the plate, well balanced, you want a beautiful presentation. the japanese are great artists when it comes to that. : : : reminiscing. clip use. anita: i will grant you all of that, but after years of cooking i don’t feel like doing it anymore. i’ll go to a japanese restaurant instead. i am serious. dalia: ok. what if you were sitting and watching others cooking? anita: that is ok as long as i am not cooking. toby: pointing at anita and laughing. i am with her. i am not cooking anymore i go out to eat. dalia: good. does anyone is watching martha stewart or a cooking demonstration? jack: the food channel debbie: my son is addicted to the iron chef dalia: yes. i love watching others cooking and how they display the food. this is very creative. i have a feeling that in our beautiful facility we will bring in a chef anita: this is wonderful. anita, sonia, sara toby would like a chef to come in instead of them cooking. debbie: we will hire an iron chef. dalia: ok. this is what we are going to do now. we talked so much. i am going to give each one of you a piece of paper : : : clip use. space issue. dalia: i am wondering how we could put on display all the writing? anita: between the panels on the window pauline the nurse helps with the arts supplies. dalia is walking over to the blackboard on wheels and brings it over to where the fhpchart is. space issue. dalla is carrying a cane of a participant who left the cane hanging from the board. dalia: i think it is sara’s cane june my sister-in-law is bringing it over to sara who is busy saying: : : : - sara: i will not be writing pauline: i think she wants you to draw debbie: dalia will explain it again toby is talking to sonia in the background. dalia: i will explain socializing. clip to use. toby: they are worried since they don’t have anything to write with or draw with dalia: it is coming david reminds dalia about the light issue. dalia turns to the group. space issue. lighting issue. for a clip. : : — : : : dalia: when you look at me and i need your honest opinion, can you see me well? sara: you are in the shadow. the sun is coming behind you dalia moving backwards a little. dalia: how about that sara: now it is better. now it is not, someone turned off the light. (david turned on the lights) now it is better. david went to the light pole and tries to adjust the light. debbie: any hollywood actor likes when the light in on them. ruth: i don’t need... .just listen to you f toby to pauline: i want a red pencil and a... clip. space issue. sharing personal stories. debbie: i have a question. sometimes i don’t see very well and unfortunately sometimes don’t hear very well, can you hear better when you see the person better? space issue. av and others agree that seeing helps the hearing. debbie: l hear much better when i can see them anita: when you can watch them staff interferring. pauline is going ahead and providing participants with art supplies. dalia stops her since it is not the right time to do it yet. dalia: ok guys. i want you to concentrate and look at me since you are helping me. look at me. (david is turning off and on the lights) and tell me which way is better. space issue. clip use. participants agree it is better with the spotlight on dalia. av: the window behind you (points at the far end of the centre next to the kitchen, because it is very shiny in the background. dalia: can you go and close the blinds there? (june is going to do it) : : : av: says in hebrew that it blinds him dalia: this is great because it helps me june closes the blinds of the far window. av: this is much better dalia tells david to turn the spotlight on dalia. av: what a difference. like night and day. dalia; what if we closed the blinds behind me, would that be better? let’s try av:ithinkso debbie goes to close the blinds of the windows along the wall in front of the group. clip. space issue. : : : anita: bright light hits me right here (she points at her forehead) dalia: does it hurt you? anita: i don’t know, i can see but when he puts it on i can right away pain (points at her forehead again). anita: i see perfectly without sara: it is too sharp and you get a headache from it david is going to dim the spotlight dalia: we are going to try and make you all happy anita: comfortable debbie: and that is not easy at l’chaim making everybody happy. anita is imitating debbie “making everybody happy” david is working on his lights. anita: i see you very fine. i hear you very well. dalia: ok. sara: it bothers me very much dalia: what if i put you, sit next to ruth david: the focus is on you dalia to sara: don’t look at the light debbie is moving next to david. sara is still complaining that the light is too sharp. david moves the lights more away from sara sara: this way is better : : : socializing. ruth: let’s switch seats dalia: that is a good idea. let’s see dalia is helping sara with the move dalia; we are talking about testing here. we are not going to leave it if it bothers you. sara: i can always close my eyes. dalia is trying to sit where sara was sitting. dalia to david: it does shine in my eyes. dalia to ruth: have a sit and let me know debbie is taking dishes away to the kitchen sara: dalia could you please bring me my bag dalia: yes, it is right here clip. space issue. : : ; david: dalia if the lightwas shining off the ceiling the lightwould not bother you dalia to sara: are you bothered now? sara: no dalia: you will be working on the paper. is it too bright for you now? : : : clip. space issue. debbie turned down the lights. most people agree around the table that it is much better dimmed. dana: ok. i gathered that because the light reflects back from the white paper. dalia to david: i think we can turn it off. david: but now it is very difficult to see the board (refers to the blackboard with the flipchart sheets) dalia: what if you shine it to the board? dalia: can you see the board? harriet: yes others are nodding with their heads in approval sonia is putting on her sunglasses (perhaps with distance lenses) and looking at the board. dalia: sara are you ok sara: i am fine dalia: good david: shall i leave the light on? dalia: yes, until someone starts screaming debbie: i told you it is hard to make everybody happy. dalia starting to give instruction on the project. dalia: write your name on the top. start designing the studio. you don’t need to measure. it is not the measuring of one inch or two. this is not the issue. put your ideal creative expression studio which we talked about today. we were talking about. we talked about art, dancing, acting, singing, people who want to observe. it does not have to be perfect. you are architects right now. artists. the more sketches i see, the more chaos i see, the better it is. i don’t need to see very straight fantastic lines, that does not matter to me. just start putting your thoughts on. debbie: just put your name on the paper : : : dalia: start designing your ideal art studio. participants are taking pencils and starting to work. av: does not want to write. neither ruth. irena is looking for help. debbie is pointing to her. dalia is walking over to her. heather from staff is going to help sara. pauline is working with ruth. debbie will be working with toby and sonia. socializing. av and jack would like to work together. dalia: avrahm you can read jack what we have wrote on the flipchart. dalia explains in hebrew to ira the instructions for the project. ira does not want to do it. dalia: what it is toby? a swing in your studio? that is great. memory issue. : : : debbie leans over toby and says: remember? we are talking about creative expression studio. dalia walking over to anita. anita: i don’t know what i am doing dalia: think what would you like to see in an art studio anita: i would like to make my bedroom dalia: ok. do your bedroom anita is not that sure dalia walks over to michael: what is that? : : : michael: a pottery studio dalia: i like that dalia: are you sitting nearby? is that a wheel? michael: yes, this is a wheel. dalia: great. write here pottery studio sonia is working on her drawing. : : : dalia to pauline: write down what she says. dalia to michael: what else do you need? michael: stools to sit on dalia: make an arrow and write stools. dalia walks over to irena: in hebrew. what would you like to see in your studio? do you know how to write your name? : : : irena is writing her name down. debbie is looking over the shoulder of sonia and toby. anita is working on her own. av and jack are working together. harriet works alone and looks over to see what jack and av are doing. sara and heather are very busy with their design, pauline with ruth and dalia with ira. dalia to ira: what studio what have made you happy? ira is trying to speak in english to dalia. dana: would you like a big room? so, make a big room ira is starting to draw. dalia is pointing to jack and av about their collaboration. debbie: best architects work in teams. dalia: absolutely debbie: what are you doing there tobs. : : : dalia is going around taking photos. dalia to michael: what is that again? where do you dance in your studio? oh, is this a long table? i like that. so, in this studio we don’t do dancing. do you want to see if we could include other activities? memory issues. michael: what kind of activities? dalia is going over the activities that were discussed earlier with michael. dana to michael: would you like to think in a broader sense michael answers (could not understand) dalia: try. would you like another piece of paper. i will give you another one. debbie to toby: a record player? dalia: how is anita doing? for someone who said... look at that. anita: here is the entry to the room... dalia puts her glasses on. : : : dalia: you are doing exactly what i wanted. this is excellent. dalia: if you need more paper just let me know. dalia brings over an eraser to harriet. june (dalia’s sister-in-law looks over the shoulders of participants to see if they need her help) debbie is sitting between sonia and harriet. toby is working on her project. dalia: i have some pastel colors for anyone who would like to highlight some things clip use. socializing. : : : lots of activity around the table dalia: so michael, is this is a piano? michael answers. dalia: so write it down michael: i am waiting for another paper. dalia: i am sorry. i forgot. i will bring you another paper. dalia: if you need more paper just ask. i will be more than happy to give you end of wide shot (ws) tape i of figure : participants at l’chaim centre bending wires to d shapes analysis of videotaped session lc. ws. session , july , . tape i of designing a creative expression studio. design, space, lights issues. discussions on creativity, and what is art. social situation • several of the participants seem to enjoy watching who is coming into the centre. they wave to incoming visitors and monitor who is coming in and going out when they have full view of the entrance. • participants with dementia: toby, ruth, sonia hardly say a word, yet they are focused, listening to everything that is going on. toby called me over to let me know that they need pencils to draw with. no one even got up to go to the washroom. no one fell asleep. • anita, who is diagnosed with dementia, is very active and very responsive. • harriet, jack, avraham were quieter than usual. • there is interaction between toby and sonia, jack and av, harriet and jack. • ruth, who said very little during the session, did volunteer to switch seats with sara. i was surprised to hear her offer. i was worried about whether she was aware of what was going on. later, after the session was over, ruth came over to me and said quietly, i heard every word, i was right into it. i just did not feel like talking. you are wonderful and i enjoy every minute of it. a toby does participate every once in awhile. although the contents of her sentences are at times off the topic, she shows an interest in speaking and staying connected. a noticed a reluctance to be the first person to sit at the table. this could be a space design issue as well. • harriet chooses a seat based on her visual contact with the rest of the centre. • participants who don’t speak the language arc left out, in spite of the effort to include them. this happened at the margaret fulton centre as well. • avraham showed an interest in how toby managed to arrive at the centre. • it was interesting to hear jack suggesting that i should sit down, since it would make me one of them (the participants), and not take the leading role. participants’ abilities • the participants’ abilities are being demonstrated through the activities and the discussions on the arts, creativity and space design. • having a diagnosis of dementia needs to be more clearly identified since not all the dementias exhibit the same symptoms. for instance, anita is losing her ability to control her responses. her outbursts are embarrassing and family and friends are avoiding her. yet, she is clear about her wants and desires, although socially they are not accepted. at a visit to her house, anita expressed her affection for another man in the community. it was done with no hesitation, in front of her husband. she even brought out a photo of the man. i believe that if anita was well, she probably would have concealed those thoughts. toby too expressed her opinions on sensitive topics such as sex, which she might have kept more private before she got sick with dementia. ruth will not share her thoughts too much in public but will do it later in private. her memory is suffering. although at first glance, michael seems to be ok, it becomes clear as the conversation develops that he has problems concentrating — his logic is somewhat unclear. there is a general feeling that he may not get all the content of the conversation right. • among participants who are not diagnosed with dementia, a few may have mild memory impairment (mci) or just slowing down of responses. space issues • although the tables were arranged for a bigger group, i felt we needed to reduce the number of tables to fit the smaller group. closing the distance between myself and the participants plays an important role in establishing better interaction. • there was very little interruption from visitors and very little waving, i think because the group was tucked away and did not have eye contact with the main entrance. this needs to be examined. if the priority is on the participants’ being engaged in the creative expression program, then we need to reduce interruptions to their concentration. if the emphasis is on socialization between the participants and visitors, then we need to improve opportunities for this desired behaviour. if both are important, the limitations and the desired outcomes need to be taken into consideration when designing a studio for such activities. • i cannot find a good place to sit and conduct the session at the same time. i tried the empty table until sara came along but she was left out of the circle of discussion. participants prefer to see me sit and not stand. • the intensity and direction of the lights occupied a great deal of discussion around the table. here are some of the comments: — an object against the light looks dark with no details — sharp lights cause pain and glare — seeing improves hearing — windows are important but where to place them depends on the use of the space — when working on white surfaces such as white paper, lights need to be dimmed • wood floor is preferable to carpet • washrooms need to be close by dalia as participant/obseiver, researcher, architect, educator i was really curious about how this session would turn out. i was interested in the drawings the participants produced. i was surprised that all of them took up the pencils and produced something. there was a genuine effort to develop an art studio. even those who protested that they didn’t feel like writing ended up drafting. toby was my biggest surprise. she was so alert during the whole session. she did not say much but she was listening, laughing, watching intently. the way she got involved with the drawing made me feel so good. it made me feel that all the efforts made in engaging the seniors with dementia are of value. watching her face, her sincerity was so heart-warming. although she wanted a swing in her art studio, it really did not matter. i was reminded that friends of mine, who were artists, installed all kinds of objects and spaces in their studios they would not dare put in their homes. so what was the difference between them and toby’s desire to have a swing? i would like to have a hammock in my dream studio. i guess that would not qualify as relevant in the eyes of some people, but then who cares. if toby was following her hidden desires, logical or illogical, she was engaged in the project, which made her feel proud of her work. looking at her and watching her proved to me why it is so important to continue working with these seniors as long as possible. after visiting toby at home, i realized that being engaged in creative expression activities provided her at least with one place she could express herself and be outside the shadow of her husband. i tremendously enjoyed the process of bringing the group together to think about elements of design, space, light and quality of finishes. participants with and without dementia were engaged in the process. each participant engaged according to their own abilities. staff issues by now, the staff understands that the participants need time to concentrate. as a result, interruptions were limited and done discreetly. no one was pulled away from the table. serving of coffee and tea was limited to the beginning of the session. chapter iv: understandings derived through inquiry by using ajr/tography this study arrived at understandings in three main areas: • understandings derived from the literature review, • understandings revealed in the implementation of the creative expression activities program, and • understandings based on the physical changes to the environment and the users’ response to them. in this study we linked the role of the physical environment with the creative expression abilities of seniors with dementia. we experimented with various changes to the environment, observed the reactions of participants, and interviewed a range of stakeholders including the seniors themselves. we also considered the physiological and cognitive changes associated with aging and dementia with references that linked them to creative expression abilities. those references assisted us later in formulating a theoretical approach to space design for these seniors as they engage in creative expression activities. themes that emerged from the literature review . the person-centred approach to care, defined as personhood, is crucial in achieving positive changes in problem behaviour, improving communication and independence. . the environment in which seniors with dementia reside can be considered therapeutic only if it embraces a comprehensive approach to care, based on preserving the person’s dignity, and protecting the person’s rights. . caregivers need to understand the condition from a neuro-psychological perspective, be aware of the social construct developing around the person, be sensitive to changing needs and be flexible in treating the person as the condition progresses. . there is a lack of empirical research on appropriate creative expression activities specifically designed for seniors with dementia. with no appropriate studies available on assessing their creative abilities, there is no clear understanding of what meaningful creative expression activities for these seniors could be. with more studies on such activities, the more effective the therapeutic environment will become. . there is lack of input from people with dementia who are capable of contributing their views about how their space can be used. the scientific community has failed to involve their subjects as equal partners wherever possible. design principles for a therapeutic environment i adopted the following five design principles from cohen and weisman ( ) in their discussion of institutional environments, specifically in a special care unit. cohen and weisman recommend: principle : clusters of small activity spaces principle : opportunities for meaningful wandering principle : positive outdoor spaces principle other living things principle spaces from public to private realms i applied these principles to the two selected adult day care centres, where frail seniors with and without dementia spend most of the day two to three times a week. these seniors still live in their community, at home or with their family. in addition, to minimize the negative impact of the institutional setting on seniors with dementia, i took into account the recommendations of cohen and weisman ( , p. - ) to consider these elements that can enhance the therapeutic environment: • regulated stimulation and challenges • autonomy and control • ties to the healthy and familiar • functional ability through meaningful activity • safety and security • orientation to space and time • wandering treated as an opportunity • social contact • opportunities for privacy these elements are dealt with in discussing the physical arrangements of the two sites in connection with the detailed drawings in a following section. after addressing the five principles, i add two new principles to take into account the level of participation the seniors engage in and the preferences the seniors appear to exhibit for ethnic groupings. applying the five design principles at the l’chaim and margaret fulton centres principle . clusters of small activity spaces at margaret fulton a great deal of attention was given to the design of small activity spaces. designing smaller spaces came as a reaction to the large open spaces typical of church basements that housed adult day care centres mainly because of financial constraints. most of the time, these small spaces work well depending on the kind of activity, the noise level, the activity generated and the number of participants. at the margaret fulton centre, the intention was to provide a cosier, home-like atmosphere. however, in this study we discovered that size alone was not enough to attract participants to stay in a space; other considerations played an important role in the decision, such as windows and access to the outdoors. it was the small size of the back room at margaret fulton centre that resulted in a walk out of three women participating in the study. one refused to come back. she opted for an activity in a larger room and a walk in the “fresh air”. although there were windows in the room, only a small fraction of them opened up enough to allow the outdoor air to flow in a significant way. in addition, the weather outside played an important role in attracting the participants for an outdoor activity after several days of continuous rain. while margaret fulton centre provided smaller spaces for a variety of activities, the l’chaim centre provided one large open area where all the seniors worked on the same activity at the same time and in the same space. this type of design generated problems of noise and did not provide variety, from private to public spaces. to add to the problem, l’chaim centre provides services to a great mix of seniors with various abilities. one large space does not allow for several activities to occur at the same time. the lack of transition zones from public use to private use of space in the centre encouraged interference from visitors coming in and out of the centre at will. although this interference was very apparent in most of the sessions, it was welcomed by the participants who were curious about who enters the centre. i noticed that those who came late during the day to join at the end of a program raised some criticism from those who were there earlier and on time. to resolve this issue, i would recommend sectioning off a small space for those who arrive late; they can join the rest of the group at lunch time. as well, when people do not get along, a physical separation could help ease the tension. drawings lc - at the l’chaim centre and drawings mf - at the margaret fulton centre illustrate the problems of small spaces and the need to take into account the number of participants in any given activity, their range of body movement, walking aids, wheel chairs, the number of staff or facilitators managing the activity to ensure safe circulation, and access to the seating area and washrooms. architectural designers of dementia care facilities face challenges that may contradict each other, such as the need to create spaces that are small yet big enough to accommodate all physical and mental needs of an elderly person with dementia. this is not an easy task and the solution may lie in designing flexible spaces that can be divided easily to suit a variety of activities and different group sizes. principle . opportunities for meaningful wandering the desire for wandering is one of the behavioural symptoms of dementia. an understanding of this kind of behaviour is relatively new in the field of dementia care and, until recently, was perceived as a very disturbing behaviour that needed to be stopped, whether through the use of physical restraints or medication. today, with better understanding and a more perspn-oriented approach to dementia care, wandering can potentially turn into a positive experience if appropriately incorporated in the design of therapeutic environments for people with dementia. not only that, care providers now recognize that wandering has the potential to become an interesting and meaningful experience, when familiar symbols and focal points are provided along the wandering path. at the l’chaim centre there is no designated space for indoor or outdoor wandering. of course, the seniors can leave the centre and wander around the building of the jewish community centre, but then they will find themselves in a non-protective environment, with stairs leading to other floors and to the outside, that pose a real danger of getting confused, falling or getting lost. the present space at the l’chaim centre is too small to consider such an activity. the majority of the clients seemed able to focus on the tasks in front of them and the need to wander was not that urgent or apparent. at margaret fulton centre, the option for wandering inside the facility and outside was incorporated within the design of the facility. the wandering path outside the facility goes around and through a gazebo with flowering plants, hanging pots and benches. the path is within an enclosed garden, which is nestled next to a park on the edge of a wooded area of very tall trees and thick vegetation that include ivy, moss and fallen tree trunks. there is plenty of activity in the adjacent park where children and adults visit. the wooded area is rich in birds, squirrels and noises that are heard from a variety of sources. the seniors can sit at a bench and follow the children chase a ball or watch the birds flying over. they can stop to examine the various plants along the path while supporting themselves with a guard rail. at one of the sessions outside the centre, as we were sitting at a garden table next to the wandering path, one of the participants in the study was attracted to the birds flying over and to the noise of the children coming from the park. as a facilitator who encourages creative expression, i seized that opportunity and developed a discussion on birds, trees, nature and the attributes of being able to sit outside and witness a flight of a bird, hear children play and be reminded of grandchildren and our own childhood memories. although she usually has difficulties concentrating on the task in front of her, she managed to be fully coherent and engaged in her interest of that moment. the interior wandering path at the margaret fulton centre was less successful in providing an activity that did not conflict with other activities happening at the same time. the interior path is partly a corridor and partly a space within another designated area. during bad weather, walking activity stays within the facility and the path intrudes on other activities. this conflict of activities was demonstrated at one of our sessions in the arts room. as we were setting up the space for the study participants, i noticed an increase in the amount of walking activity through the space we were using. my first reaction was to ask the staff to stop the wandering through our space. all i could think about was the potential difficulties that lay ahead of me in trying to keep the attention of the participants. in fact, there was not enough room for wandering seniors, their care aids and myself, as i needed room to bend over the desks, the piano, piano bench and the pianist, and to make room for a music stand, a flipchart, desks and chairs for staff and clients, and room for the cameras and the camera man. the space was so tight that the camera man could not check both cameras. at the end of the session, he told me that the wide angle camera was not recording. i was so disappointed because we would have caught on camera the commotion and the interference of the wandering activity that day. to add to the stress, seniors were using the space to get to the washrooms; those doors opened to the arts activity room. there was too much happening in one small space. as i contemplated how to salvage the session planned for that day, i almost lost a great opportunity to gain a better understanding about what was happening. the director reminded me that earlier i requested that the centre’s activities continue, no matter what, so i could learn from difficult situations. as the wanderers and their helpers continued to pass through our space, i became agitated and could not concentrate on the task in front of me. i felt that my effort to build up a rapport with the study participants was undermined. the musician was upset at not having enough room to manipulate her bow or to maintain eye contact with the participants; the wanderers were walking right in front of her. the facilitator from the staff who was assigned to help me apologized several times. i explained that it was my own request that everything should continue as usual. of course this was an extreme situation. nevertheless, it illustrated the damage caused to efforts to communicate with people with dementia when unrelated activities interfere. a couple of participants got up and left and never returned until one of them was accompanied back by a staff member. the level of agitation was apparent and, with no possible control over the situation, i lost my ability to hold the interest of the group. when the wandering ceased so did the interruptions. then it was possible to revive interest in the planned session for that day. incidentally, it needs to be noted that the wanderers and their care aides were amused at the situation and could hardly wait to return for their next rounds to comment or joke with us and the study participants. as they passed by, one wanderer asked a participant if anyone would be waiting for her at home. another asked what we were doing. others commented on the piano and violin playing. our presence and the activity of arts and live music provided a meaningful and entertaining focal point on their wandering path. the question that arose from this experiment was about how we could continue to solicit reactions to interesting activities along the pathway without disrupting another activity, which was responsible for soliciting these amused reactions of the wanderers? how could we carry out two activities without disturbing each other and yet provide an opportunity for one of them to be observed, heard and provide opportunities for meaningful interaction even for a short time? and how could we resolve the conflict of two activities with an architectural solution? drawing mf- of margaret fulton centre demonstrates one solution that could be achieved with minimal cost and without the need to change the existing programs. i suggested diverting the interior wandering path away from the arts area by expanding the north wall outward a few feet and partially enclosing the arts area with pony walls; this would allow visual observation from both sides of the wall and provide access to sound. by doing so, the wandering activity could go on while the others concentrated on their artwork. for more privacy, the facilitator could hang visual barriers above the pony walls. since margaret fulton centre is a relatively new facility (it was opened in ), it is less likely that such recommendations would be implemented in the near future. in contrast, the l’chaim centre happened to be ready for some renovation and that opportunity coincided with this study. and so, we were fortunate to recommend changes at the l’chaim centre and receiye feedback about them. principle . positive outdoor space at margaret fulton centre a great deal of effort went into providing an outdoor area that not only is pleasant visually, but also is very useful as a wandering path, out door picnics, a place to sit quietly in a gazebo, a place to watch nature, a place to watch others at a distance and close by. the outdoor area is beautifully nestled within the larger natural setting and in good weather it acts as an extension of the facility itself. the french doors are fully open in good weather and since the garden is surrounded by a fence, clients can move around and in and out at will. there is a sense of freedom. however, some clients don’t feel this sense of freedom. one person in particular who wanted to leave the premises asked why he was treated like a criminal. i stood there lost for words because this is how i felt myself. here is an adult whose oniy problem is that he cannot remember his way back once he leaves, but not remembering did not affect his understandings of being locked away. at l’chaim centre, the outdoor area is secondary to the main space indoors. outdoors is a balcony that is shared space. the balcony can only be reached through the lounge area, which makes it less accessible. outside there are wooden benches and a trellis that is bare during winter time. the plants and pots are neglected and do not provide special interest. l’chaim centre could make use of the outdoors more productively. in both centres, there is very little protection from rain or wind. margaret fulton centre has a deep overhang extending from the roof. however, the space is used to store garden furniture, tools and miscellaneous objects. principle . other living things both centres had children day care centres a floor below them. clients could watch the children during their play outside. at l’chaim centre, one client pointed out to me his great-grandchild as he was playing on a swing. this client would check his watch and leave the room so he could wave to the child from the balcony. both centres interact with the children in various programs designed especially for intergenerational activities. in both places there are no live-in animals. while this is a desired element according to cohen and wiesman’s ( ) design principles, it was not practical in this setting since everybody goes home around : pm each day. in addition, l’chaim centre operates only days a week and other organizations also use the centre. at margaret fulton centre, the outdoors provides exposure to living things from a distance, while at l’chaim centre there is a relatively large fish tank, but i did not see anyone expressing interest in it during the times i was there. principle . range of public to private spaces in architectural terms public space refers to spaces that are accessible by anyone who wants to use them and follows the behaviour for that space set by the architect, the developer and the regulating authorities responsible for the safety of the users. semi-private spaces are more restrictive as to who may use the space, while the use is more defined. for example, a public space can be a street, a sidewalk or a plaza. a semi-private space may be a waiting area at a doctors’ office or a walkway leading to a private house. private space is somewhat more complicated. it can be as simple as our home, our bedroom or our car. however, private space can also be a matter of individual perception and may change from culture to culture. private spaces can be designed to be included in public spaces, such as a hidden corner behind a statue in the middle of a plaza. so, how does all of this relate to the data collection and analysis at the two facilities in the study? at the l’chaim centre i see mostly a semi-private space that begins at the entry to the centre and continues through the corridor and the main activity room. there are no visual barriers, nor human behaviours to indicate that the space entered is limited to specific users. there are no indicators and clues that stop people from entering the space if they have no reason to be there. there is no control point to monitor who enters and who leaves. as a result, people wander in and out of the centre, not realizing they have just disturbed an activity or someone’s concentration. even the offices of the program coordinator, nurse and director are open to anyone who wanders in. the two washrooms do provide private spaces once inside. however, one washroom door opens directly into the main activity room and compromises a very private activity. drawing lc- , demonstrates a solution as to how a semi-public space can be turned into a private space: the treatment room depicted there now has a door for privacy. the existing space was loosely defined by a desk and two chairs and was used by the nurse. it was exposed to passing visitors and did not protect the identity of the client nor the reasons for seeing the nurse. to resolve the problem, the nurse used a divider that provided some visual separation from visitors. as a result of my recommendations staff reclaimed a small room in the back of the facility that originally was planned for private treatment and later became a storage room. new room dividers and new furniture arrangements helped define smaller spaces for various activities. the activities coordinator reported that it took some time for the clients to get used to the new arrangements, but slowly they are responding to the changes and using the smaller spaces more often. at margaret fulton centre, i found a very clear transition from public to private spaces. the facility was designed by an architect with input from the director and staff. a roof overhang at the front entry protects all corners from the weather, especially the clients. the overhang also separates the facility from the rest of the public area and sends a message that this is a building that protects its inhabitants. the front doors are locked and only those with an approved code can enter and exit the facility. inside the facility, there is a clear range of semi-private to private space. small groups may gather in front of the fireplace; there is the option to close off treatment rooms from the rest of the facility. at earlier times the centre used small spaces for small group activity, such as playing cards. to play cards, a group of four to eight seniors would congregate at the far end of the dining room using collapsible cards tables. there was an unspoken understanding that the noise level of the activity had to be controlled and any expression of enjoyment had to be moderated. keeping this activity quiet took away from the spontaneity and the organic flow of communication, discussion, laughing, teasing, singing, or yelling out when losing or winning. the five design principles were applied to the margaret fulton and l’chaim adult day care centres, even though these design principles are most applicable to the design of a new facility or a major renovation. in existing centres, applying design principles is somewhat more complicated, possibly for lack of space, funding, type of clientele and the kind of services to be provided. therefore, the following recommendations should be seen from a general point of view and called on when they become relevant. since margaret fulton centre is a relative new facility, its design already includes many aspects of these principles. the l’chaim centre and other centres like it need in depth review for changes. general recommendations the following suggestions for design consideration apply to each design principle within the context of the two centres: design principle . to provide clusters of small activity spaces to promote homelike atmosphere. • long corridors can be broken up by adding dining rooms, kitchen areas and activity rooms • divide large multipurpose activity room into smaller and specialized spaces • group together residents of similar ethnic background in each cluster • provide ethnic food • use interior finishes to reflect taste, values and beliefs typical to the culture design principle . to provide opportunities for meaningful wandering • open dead-end corridors and join them together to allow a continuing wandering path • provide spaces of interest and landmarks along the path such as a seating area and art • make sure floor finishes provide safe and smooth surfaces for walking design principle . to provide positive outdoor spaces • emphasize the doors to the outside, make them easy to be recognized and to be handled • provide secured outdoor space by building a fence covered with vegetation • provide a garden for the residents to work in • look into having a pet that will use the garden as well • provide interesting pathways with opportunities for resting and socializing • provide protection from the elements • provide transition zones such as greenhouses and sun rooms • continue to provide outdoor ethnic symbols typical to the culture • locate a washroom nearby design principle . provide other living things • add plants and animals, wherever applicable, to be taken care of by the residents to increase feelings of autonomy and control, sensory stimulation, reminiscence and social interaction. plants provide colors, flowers, and fragrances, while animals can provide visual and auditory stimulation. design principle . provide a variety of opportunities for movement from public to private spaces • satisfy the need for semi-private, or in-between spaces before entering a public space. consider adding spaces that allow observation from a distance • introduce spaces for solitude, perhaps a small place with seating for one • provide protected spaces to prevent over-stimulation and allow for physical distance. use a furniture layout conducive to social interaction or solitude design principle : provide spaces for different levels of participation in creative expression activities although the five design principles recommended by cohen and weisman ( ) were sufficient to capture most of the architectural concepts in designing spaces for seniors with dementia, they lacked in depth identification and integration of the subtle differences in the levels of participation that the seniors displayed during the inquiry. although cohen and weisman touch briefly on the idea of “in-between spaces” (p. ), it was mostly applied to transitional realms between the in door and the out door spaces. i identified four different behaviours that were exhibited: active participation, silent participation, distant participation and passive participation. each type carries behavioural information that needs to be considered when designing spaces for seniors, regardless of the setting. once we acknowledge the importance of the arts in dementia care, the next step would be recognizing the importance of appropriate space for creative activities that meets these levels of participation. taking all of these elements into account would have a significant impact on the field of architecture and the design for seniors with dementia. the following are the four types of participation and examples that were observed: a) active participation is defined as full engagement, including physical and verbal interaction with others, making efforts to communicate in any way possible. examples: in l’chaim centre, participants responded to music, jokes, stories, teasing in a very normal way. they asked questions, they were happy to dance with me and express opinions on all kinds of topics. they were engaged in making art, manipulating telephone wires and designing their dream studio. they responded with humour and critical comments throughout the study. at margaret fulton the level of active participation took on a different flavor, yet there were moments of equally active engagement as i witnessed at the l’chaim centre. the fact that the seniors at margaret fulton were a homogenous group with moderate dementia framed my whole experience with them. perhaps my expectations of their remaining abilities were lower as a result. the language barrier with the spanish women made it difficult to assess of their ability to be engaged in active participation. but when music was the highlight of the session, the spanish speaking women were equally as involved as the english speaking women. b) silent participation happens when seniors are present at the activity, but choose or are not able to express themselves verbally. still, they may show interest through non-verbal indicators such as facial expression. for example: at l’chaim centre, several participants who sat at the table did not say a word or volunteered very few words. however, from their eyes and body language i understood they were following what was happening around the table. one instance in particular remains fresh in my memory, when one woman with moderate dementia approached me after the session was over and said: “i want you to know that i have heard everything you said and that i come especially to hear you. i love your sessions.” her comment only reinforced my belief that silent participation is no indication of lack of interest, and every effort should be made to include these silent participants. every once in a while i was surprised at the responses and comments i received from seniors who had a more advanced form of dementia than the rest. a woman who was usually very quiet during all our sessions at l’chaim centre commented to another participant that she didn’t understand what creativity meant. i was not expecting to hear anything from her, but here it came loud and clear. situations like this only proved to me that i need to be vigilant and expect the unexpected when dealing with seniors with dementia. at margaret fulton centre, i experienced the same surprise. one of the english speaking women, who hardly said a word unless she was asked first, commented that singing in her church was creative. on numerous occasions i could see a foot moving to the music, a smile, and eyes that followed me as i moved around the room. as far as i was concerned, the silent participants were as strong in their present as the active participants. they were just quieter. c) distance participation describes a person who may watch the activity from a distance. while this person may or may not contribute to the ongoing activity, their interest is sufficient to keep them close by. this group proved to be the most challenging one. for example, they would not sit around the activity table, yet their actions left all of us in limbo and added a low level of stress to all of us while hovering in the background. i felt the need to bring them in. other participants were restless when i made these efforts, and so was i. to ignore them would mean leaving them out, to include them would take my attention away from those who were already seated and ready to participate. what could be done to lure these seniors in? it occurred to me that perhaps this was a space issue. by nature, some of us need to pass through a transition zone before we commit ourselves to anything. so, i became aware that some of the seniors needed time and space before committing themselves to any activity and perhaps they would stay in that gray zone for an unspecified time — what alr/tography calls the in-between areas in the seams of two fabrics. this kind of behavior carries significant information for designing therapeutic environments for seniors with dementia and deserves our attention. d) passive participation occurs when individuals view a video, television or movie. this is still a form of participation and there is always the chance that it may progress later into any of the other types of participation. design principle : provide spaces to open up opportunities to celebrate one’s ethnicity although the issue of ethnicity was not the focus of this study, i became aware of it as i delved deeper into the process of collecting data. the two centres were fundamentally different from each other in the clientele they served, which had a significant impact on the social make up and alliances or friendships that were formed. the l’chaim centre serves jewish elderly men and women. although they may come from various parts of the world, they are bound by faith, tradition, customs, the common languages of hebrew and yiddish and similar life experiences. all the participants with the exception of one person liked to be with each other and craved being with other jews. at margaret fulton the situation was different. it is a multi-cultural centre that resembles the make up of the canadian society at large. the spanish-speaking women liked being with each other, while the others hardly paid attention to them. there was a definite preference for companionship based on cultural affinity. i have to admit that a different kind of energy was established between me and the seniors at the l’chaim centre that set it apart from what happened at margaret fulton centre. at l’chaim centre, i felt i did not have to prove worthy of the seniors’ affection. i was accepted as one of them. this easy acceptance also framed my interaction with them. discussions flowed without me having to think about every move or having to be politically correct in every word. there was an underlying understanding that did not need to be stated up front. there was that comfort zone we all shared regardless of the dementia, the frailty and a whole host of issues each one of us brought in as participants. this feeling of familiarity freed the seniors and me to enjoy each other’s company on a much deeper level. on the other hand, at margaret fulton, i actually identified with the spanish speaking women. like them, i had an accent and like them, i still feel like an outsider. the reason i bring up this issue of ethnicity is because it appears to have a made significant contribution to the quality of interaction with the seniors in both places. as easy as it was in l’chaim centre to establish warm relationships immediately, it was much harder at margaret fulton centre to gain the trust and closeness i enjoyed at the l’chaim centre. i would like to explore this topic more deeply in the future. it would be interesting to see how facilitators from different backgrounds interact with seniors with dementia who belong to one ethnic group. active, silent, distance & passive participations: ‘ viewing and making art ‘ viewing, listening and making music ‘ viewing dance and dancing • viewing & listening to reminiscing • viewing and participating in cooking and eating for what purpose • expectations of parties involved in correlation with users and function space requirements accessible & secured storage • horizontal & vertical work surface • washroom • kitchen • display area • distance & passive viewing • media viewing the following flow chart (see figure ) summarizes the various aspects that need to be taken into consideration when designing space for creative expression activities. architects and designers may find this chart useful. it is based on the type of participation, and the type of activities in creative expression programs. who are the users seniors with dementia: • background information • medical information • mental & physical abilities • social skills facilitator, staff, volunteers, family and friends what type of participation what materials & equipments e • art supplies • playing instruments • furniture • lighting . media equipment jl accessibility and circulation requirements . entry and exit to and from the area of activity • resident mobility by foot, wheelchairs, walkers • t .ncaticrn of wishrooms interior finishes • color, texture, patterns and lighting to suit design criteria for users, function & type of participation space design • size, shape and the interrelationship between the various functions and types of participations figure : environmental analysis of user, function and space requirements for creative expression activities physical changes to the environment and the users’ response to them although the four types of active, silent, distant and passive participation were identified as an important element in designing spaces for creative expression activities, the opportunities to accommodate these important behaviors were limited at the two centres. at l’chaim space was at a premium and therefore i was reluctant to use space that was needed very badly for group activity. silent, passive and distant participation could then occur from anywhere in the room. at margaret fulton centre, the four types of participation could be accommodated in some spaces while not in others. the smaller spaces were too enclosed and changing them dramatically would not have served the centre in a practical way. to accommodate the various types of participation we needed to consider them in the early design phases of the facilities’ programming. as a result of the difficulties in implementing specific spaces for the four identified types of participation, we followed the approach i have taken in varying the furniture layout and in my interactions with the seniors. i encouraged silent participants by looking at them and creating eye contact, including them in the conversations, distributing the art supplies to them just as i would to everybody else. in participation from a distance, i made sure i projected my voice to reach them made, eye contact, smiled, made comments to engage them and bring them slowly to the activity table. those who were passive and not interested at all were invited to sit on more comfortable chairs near the activity if they wanted. no pressure was exercised to join the group. responses of stakeholders to changes in the environment a surprise series of events emerged when two board members of the l’chaim centre informed me that there were some plans to refresh the interior finishes of the centre. this move originated with the administration of the jewish community centre ( cc) rather than l’chaim centre, which rents space from the jcc., nevertheless, the administration of the l’chaim centre welcomed the initiative. based on my experience as an architectural designer and on feedback i got from the seniors and staff, i offered some ideas about interior changes they would like to see and about my understanding of the physical and cognitive abilities of seniors with dementia. since i was embarking on a long journey abroad, i asked the two board members to collect some linoleum samples and a range of paint samples, so i could put together a color scheme to take back for approval by the board and the director of the centre. the proposed color scheme was accepted and so was the new floor covering and its design. the changes took place while i was away. i must admit i had been sceptical that any changes would take place. i knew at the outset of this study that any architectural changes to spaces at the two sites were unlikely to happen. however, now i would have a real opportunity to suggest changes and receive feedback from the participants; seniors and staff. while i was thousands of miles away from vancouver, i received the following e-mail from debbie, the program director at l’chaim: i wanted to drop a quick note before my ‘shabbos chicken’to let you know that l ‘chaim has been painted, your requested color, and the marmoleum floor has been going in for the last two days. they are not quite finished, but it looks incredible. iwas thinking ofretiring, but now i will have to work there anotherfew years, to enjoy it. it is so bright and clean, amazing. you ‘re a genius. can ‘t wait for you to see it. i will be away when you get back, but feel free to drop by. upon my return i asked debbie to schedule another session with the seniors to document their responses to the recent changes. david, the film producer and i arrived for an additional session. the group of seniors was a mix of old and new corners. the session started with sharing my travelling experiences in israel, which is a favourite subject at the l’chaim centre, where jewish sentiments about the state of israel run very deeply. the other half of the session was devoted to feedback from the seniors regarding their perception of the newly decorated space. debbie wrote down the comments from the group on a flipchart. one week later, she sent me an e-mail with all the responses that were collected that day: feedback from the seniors of the l ‘chaim adult day centre, recorded on friday november , question: how do you like the changes made to the day centre? answers: floor is safe. looks cleaner, bigger. colors are cold. we need artwork on the walls. better than carpets. contrast in color between furniture and floor is good. a little too sanitary looking. we need to make it warmer. too nude. need to dress it up. the carpet was ‘homier’. pleased with changes. larger, brighter, fresher. black out blinds need color. curtain? valance? floor must be coated. looks pretty. (anita, not present, wants me to add this to list... doesn’t like two tones in the floor. it’s cold. wants a home-like feel) question: what would make it more home-like? answers: more pictures. valance, curtains, drapes. fake fireplace. floor lamps, table coverings, good smells, painted border, flowers in uniform pots. corkboards with our work. dividers making defined seating areas. pillows. later that day, the director of the centre invited me into her office to discuss the recent changes and budget issues regarding requests to warm up the place and make it cosier. some concerns were raised about the process of how the changes were achieved. the director felt that she should have been advised of the proposed changes earlier. since i was not present to continue any consultations with any of the parties involved, the matter took on a life of its own. i must say that i was worried about the results of the renovation. not being there to supervise the implementation of the interior changes potentially could have been a source of problems. however, when i walked into the centre to collect the seniors’ reactions after an absence of two months, i was pleasantly surprised. the place looked airy, clean, brighter, easier to maintain and looked much larger. the lighter colors on the walls, doors and floor opened up the space and gave an impression that some walls had been extended outward. however, with the physical changes there was a change in the atmosphere and ambience the centre projected when the darker colors and the dark carpet were there. the need to feel at home and the importance of it was demonstrated clearly in the response of the participants to the changes. although the changes were welcomed and appreciated, the sorrow for the loss of the home-like feeling was evident. i knew as a designer that a home-like atmosphere could be regained easily by adding some accessories that are typical to residential homes, such as a fireplace, curtains, warm lights and pillows and so i was not that concerned. in a subsequent telephone conversation with to discuss recent developments in an effort to improve the home-like atmosphere, she reported that some of the ideas suggested by the seniors during the feedback session were implemented and that an electric fire place was seriously being considered. she reported that several room dividers were purchased in an effort to divide the large room into smaller spaces for privacy, feeling of intimacy and the enhanced home-like feeling. a couple of cork boards were purchased as well for artwork displays. at the entry debbie provided a couple of chairs, a small coffee table with a display of flowers to receive the seniors as they come into the centre and break the long corridor into segments with interesting focal points along the way and a place to sit down when waiting for a car ride. what transpired at the l’chaim centre since the study began was beyond all my expectations. i was fortunate to witness changes over a short period of time. i had the opportunity to observe meaningful changes, assess them, get feedback from all parties involved and be able to respond again to some of it. even more fulfilling, i am still involved with an ongoing process of facilitating changes. i felt that my research work served as a catalyst for changes that had been needed in the centre for a long time. i truly expected to conduct my study and be out of there the moment sessions were over. however, a bond developed between myself, the seniors and the staff, debbie the program director, in particular. she made me feel at home and was very gracious and very accommodating. in addition to the architectural changes that took place in the centre, there were also other changes to the programs and the approach to programs implementation. earlier, on september , , debbie sent me this e-mail: the experience of having dalia gottlieb tanaka do her research at the l ‘chaim adult day centre has been a positive one for staffand clients. the staff has relearned the importance of empowering seniors to make their own choices, in programs, and changes to the environment. this writer was making all the decisions and has now implemented a shfl in her approach. this writer also now realizes that the setting as is, is very distracting to the participants. that had become, ‘the way it is’ at l ‘chaim, but changes will now be made to make leading a group easierfor the programmer. room dividers, boards, arrangement of tables, asking other stafffor no disruptions, etc... will now be used. we will also start using mini mentals as part of our initial admission of the client, fit has not already been done by the case manager. the seniors always lookedforward to dalia ‘s visits. theyfelt honored that someone was doing this type ofwork that would impact their lives. that dalia cared and wanted to make a difference endeared her to them. they loved her ‘give me five’ request. they felt they were being rewardedfor a special contribution. surprisingly, they were willing to try the furniture in different combinations. this writer thought that fragile seniors do better with no changes to routine. but the seniors of l ‘chaim regarded dalia ‘s changes; eg. to furniture, lighting, music, routine, or breakfast choice, as adventures. this made dalia ‘s visits exciting. no one reacted negatively. we wish her luck in her continued endeavors. debbie cossever, special care counsellor l ‘chaim adult day centre activities coordinator summary of understandings based on the inquiry the results of the inquiry on creativity, dementia and the therapeutic environment have led to a consensus that creativity is a purely human quality. although some researchers would argue about the level and quality of creativity in each person, the ability to express oneself continues at least through early to moderate dementia. areas destroyed in the brain show reduced cognitive ability but other areas may continue to perform intact for a while longer. through appropriate programs conducted in responsive environments designed to accommodate their needs, these seniors may continue to enjoy life to the best of their remaining abilities. understandings that emerged from this inquiry encourage space designers for seniors with dementia and their various activities to be responsive to the specific function, the users and expectations about their abilities as they progressed during this condition. a large, multi-purpose space is no longer adequate for all creative expression activities unless it can be divided into smaller spaces with temporary room dividers. a mix of spaces to suit a mix of activities would benefit seniors with dementia. based on this analysis and previous experience working with seniors with dementia, it became clear that the areas in great demand (fig. ) were: ) the multimedia centre, ) the outdoor area, and ) the washrooms. this observation became important when designing a space for creative expression activities. by providing direct access to highly used spaces, we can streamline routes to space and equipment, reduce walking distance and the need to move people around, reduce stress to participants and caregivers. as a facilitator for creative expression activities, i would enjoy being able to manipulate space and furniture according to number of participants, type of participation, type of activity and types of abilities while having easy access to supplies and media equipment. while being cognisant of space arrangements and creative expression activities, it is also important to acquire more knowledge from a multidisciplinary perspective based on the psychosocial model of dementia care, which is based on the person within the disease, including the history of each participant and their medical condition. the following presents a summary of the key issues addressed and the changes recommended for both the margaret fulton and l’chaim adult day care centres based on an in-depth review of the variations in space arrangements and the creative expression activities sessions held. it includes design resolutions to the sites and applies general standards recommended by cohen and weisman ( ). furniture arrangements at the margaret fulton and l’chaim centres l’chaim adult day care centre identifying space problems. the l’chaim adult day care centre represents what is known in architectural jargon as the “church basement” model. moore, geboy, weisman and mleziva ( ) describe it as: “... a large space as one that can accommodate the wide range of activities they expect to conduct in the course of providing adult care services” (p. ). many long-term care facilities and adult day care centres make use of a large, open multi-purpose space — and not all open spaces are inappropriate. the appropriateness depends on the activity provided and the support that makes it a success or failure. moore et al. make a direct correlation between space and its use in dementia day care and state that: “activity, experience and physical setting are fundamentally intertwined” (p. ). although this study set out to examine the requirements and design solutions for a creative expression studio for people with dementia in day care centres, we soon discovered that designing such a space could not be limited solely to the space within its walls, nor could it be designed for an isolated event. therefore, it appears that the design of a studio for creative expression activities needs to be expanded into the rest of the day care centre that takes into consideration situations that occur before, after and during the times that creative expression activities take place. certain general problems are usually associated with the “church basement” model. we observed these problems at the l’chaim centre and made efforts to resolve them within the limited means available: a. there were not enough environmental cues to increase a sense of orientation, to suggest a specific activity or to set up expectations for certain behaviour. b. there were difficulties in visual, olfactory and auditory control. c. there was no privacy in one-on-one interactions, nor opportunities for small group activities. d. the large space encourages “overpopulated activities” (moore, geboy, weisman and mleziva , p. ) that contribute to increased physical distances between service providers and participants. resolving space problems. to resolve the four overarching problems, moore et al. ( ) suggest eight attributes that are crucial when designing therapeutic environments for people with dementia: “provide a sense of: orientation, safety and security, privacy, quality stimulation, supporting functional abilities, personal control, familiarity and continuity of self and social interaction.” (p. ). most of the eight attributes were used, with the exception that privacy or the lack of it was omitted. the lack of privacy was found to be a constant area of concern throughout the data collection. categories were used when they were relevant and were otherwise omitted. in addition to the attributes cited by moore, geboy, weisman and mleziva ( ) added a category that took into account my own perspective as a researcher/facilitator or as a staff member on a contract basis. for purposes of this study i refer to that category under staff issues. what follows is a systematic analysis of each of five sessions out of seven that were conducted at the l’chaim centre. the following analysis must be viewed together with the complete lxi -inch drawings at the end of each session described. those drawings represent a visual summary of what transpired at each session. partial drawings with a focus on the furniture arrangements are included in each situation. furniture arrangements: sessions one to five session one — music £l.j. __ i keyboard cu ns i c food trolley s linoleum garbage carpet p side table / ’ - kitchen f / f fish tank m r - ‘- . l resting : lounge area i area ‘ / carpet - c.rj storage b •. — — -— / - deck figure : session one — music see drawing lc - i all tables are arranged into one large rectangular shape ( feet wide by feet long) . environmental cues • participants needed to turn around to face the violinist. some remained where they were, with their backs to the violinist. . safety and security • no room to dance and turn safely • floor finishes inappropriate for dancing • the researcher was unaware that one senior could not go back to her seat since i took the seat to help another senior • space for circulation is sufficient with this furniture arrangement, which may be the reason why the staff prefers it . familiarity and continuity of self and social interaction • participants prefer it when the facilitator/researcher sits down during discussions. this raises interesting issues of power balance between participants and the researcher, who is perceived to be in a position of control, power and leadership. this point may have an impact on the relationship the researcher is trying to build, to develop equality and trust that will facilitate openness and, hopefully, will lead to creative expression. . quality stimulation • visitors walking in and out at will are in direct contact with participants while they are engaged in various activities. there is a need to allow maximum opportunities for participants to be exposed to quality stimulation without being interrupted by visitors or staff during an activity. . difficulties in visual, olfactory and auditory control • no sound or visual separation from the kitchen • no sound or visual separation from main entry • no sound or visual separation at the nurses’ station for privacy and treatment • no discreet access to the washroom . overpopulated activities • no separation for additional concurrent activities • difficulties in reaching participants over the massive size of the tables • difficulties in maintaining direct eye contact within the to foot comfort zone • some participants were too far away from the researcher or hidden behind others • visual and hearing issues for participants and for the facilitator • no sufficient solutions to display objects close by • no sufficient solutions to display extra sheets of the flipchart close by . staff issues • staff could strain their backs when reaching out to participants across the tables, behind them or next to them • difficulties in maintaining visual and auditory control with all the participants on an ongoing and equal basis n o te s f ro m v id eo a n a ly si s w s (w id e sh o t) s e ss io n o n e - m u si c ju n e , o v er ar ch in g p ro b le m s: n ot en o u g h en vi ro nm en ta l cu es . n o vi su al , ol fa ct or y an d au di to ry co nt ro l . n o p ri v ac y . o v er p o p u la te d ac ti vi ti es (m oo re et . ) s p a c e is su es : . e n v ir o n m en ta l c u e s • p ar ti ci p an ts n ee d to tu rn ar o u n d to fa ce th e vi ol in is t. . s af et y an d se cu ri ty • n o ro om to d an ce an d tu rn sa fe ly . • f lo or fi n is h es in ap p ro p ri at e fo r da nc in g. • d if fi cu lt ie s in co nt ro ll in g al l ac ti vi ti es . • in su fi lc ie nt sp ac e fo r ci rm il at io n. . f am il ia ri ty an d co n ti n u it y o f se lf an d so ci al in te ra ct io n • p ar ti ci p an ts p re fe r re se ar o b er to si t do w n, w hi ch re v ea ls is su es ab ou t po w er an d eq ua li ty . . q u al it y st im u la ti o n • v is it or s w al ki ng in an d q, a t w ill in te rf er e w it h on go in g ac ti vi ti es . . d if fi cu lt ie s in v is u al , o lf ac to ry an d au d it o ry co n tr o l • n o so u n d or vi su al se p ar at io n fr om ki tc he n an d m ai n en tr an ce . • n o pr iv ac y at th e nu rs es ’ st at io n. • n o vi su al or d is cr ee t se p ar at io n fo r w as h ro o m . . o v er p o p u la te d ac ti v it ie s • n o se p ar at io n fo r co n cu rr en t ac ti vi ti es . • d if fi cu lt ie s in re ac h in g pa rt ic ip an ts ac ro ss ta b le s. • d if fi cu lt ie s in m ai nt ai ni ng di re ct ey e co nt ac t. • p ar ti ci p an ts to o fa r aw ay o r hi dd en be hi nd o th er s. • v is ua l an d h ea ri n g di ff ic ul tie s. • n o ea sy w ay to di sp la y ob je ct s. . f a c ll lt a to rs is su e s • r ea ch in g p ar ti ci p an ts ab ro ss th e ta b le st ra in s th e ba ck . • d if fi cu lt ie s in m ai nt ai ni ng vi su al an d au di to ry co nt ro l. c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d al ia g o tt li eb -t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri tis h c ol um bi a v an co uv er , b c . l e g e n d c lo se -u p () p ro bl em c am er a , v is ua l n i d e s ho t d is tr ac ti on c am er a l l on g t ab le c am er am an ( . x ”) m m ed .t ab le ( ) m us ic ia n ( . x r) r es ea rc h er c c ar d t ab le ( x ) p a r t ic ip a n t s q u o t e s b ar n ey : it b ro u g h t b ac k p le a sa n t m em o ri es of m y yo ut h an d m y y o u n g er d ay s w he n i u se d to go to th e ni gh t cl u b s an d d an ci n g ho ld in g la dy re al ly cl o se an d da nc in g w ith h er so it b ro u g h t b ac k lo ve ly m em o n es . ir a: t he g er m an s to ok th e pi an o. i di d no t p la y th e p ia n o si n ce th en . r u th : w el l i th in k i’ d li ke to co m e ag ai n. l ’c ha im a d u lt d ay c ar e c en tr e v an co u v er je w is h c o m m u n it y c en tr e s e s s io n i - m u s ic ju n e , a l l t a b l e s g r o u p e d t o g e t h e r l c - (i n d is se rt at io n p. ) a rt w or k se ss io n u :) session two - repeated music activity figure : session two - repeated music activity see drawing lc — tables arranged in a u-shape with opening facing main entrance . environmental cues • floor finishes need to be selected to accommodate the type of activity • not all participants have a good view of the musician and need to be reminded to turn around . safety and security • moving the notice board as a visual barrier between the kitchen and the main gathering area was a positive move. however, it reduced the space for circulation around the tables and there was a concern that the participants might trip over the legs protruding from underneath the notice board. . familiarity and continuity of self and social interaction • the participants exhibited remarkable patience as the furniture was moved around, and failed to comment on their own. most of the comments about the furniture arrangement were solicited, which raises several questions: — are the participants not aware of the changes? — do they see the changes but prefer not to comment? — are they worried about creating a fuss over it? — do they care? does it matter? • participants seem to have less stress about seat selection • adding two screens, one that screened the kitchen and another that screened the rest area near the fish tank, immediately provided a cosier feeling that defined the area of activity better. . quality stimulation combined with the next item administration office food trolley washroom ,, c keyboard •ij ws i . carpet new location of notice researcher’s . board __• table fshtank ‘. ‘ ‘ - l rattan :: screen - - s resting ),io l m - area < ,- .-,- - deck . storage b — - s. linoleum — garbace side table kitchen f lounge area carpet deck -o i . difficulties in visual, olfactory and auditory control • to reduce interference from the kitchen and increase concentration abilities, the researcher used the notice board as a partition and hung large images of pianos and stringed musical instruments on wide strips of white tyvek, a building material, which were draped over the notice board. by doing so, she presented a rich visual display of musical instruments in close proximity to some of the participants, providing clues and reminders of the topic throughout the session. • banners hung from the ceiling did not seem to be noticed . overpopulated activities • most of the problems resulting from the furniture layout in the first session were resolved: — it is easier to address participants from the front, rather than from the back or the sides. this makes it easier for them to watch the facilitator speak and follow facial expressions or any other demonstration, such as giving instructions. according to one participant: “seeing makes hearing better” — it is easier to maintain direct eye contact within the to -foot comfort zone — the distance to each participant is equal — there is better visual and hearing contact with each other — solutions were improvised for displaying objects, such as placing extra sheets from the flipehart closer to participants; need a better, more permanent architectural solution three issues remain unresolved: • the group of participants is still too large • no ability to create concurrent activities due to lack of appropriate space • no space to divide the group into higher and lower functioning individuals as needed . staff issues • difficulties in moving chairs around, especially with participants already sitting in them • u-shape arrangement seems to work well for me as a facilitator leading the program on creative expression activities. staff reported later that they have begun to use this layout on other occasions. other solutions could be tried but, due to obvious limitations of this study and cost, they were not pursued. perhaps a circle with individual curved desks could work as well or even better. n o te s f ro m v id eo a n al y si s w s (w id e sh o t) s e ss io n - r e p e a te d m u si c ju n e , s p a c e is su es : . e n v ir o n m en ta l c u e s • in ap p ro p ri at e fl oo r fi ni sh . • d if fi cu lt ie s se e in g th e m us ic ia n. . s af et y an d se cu ri ty • n ot en o u g h sp ac e fo r ci rc ul at io n ar ou nd th e ta b le s. . f am il ia ri ty an d co n ti n u it y o f se lf an d so ci al in te ra ct io n • s en io rs di d no t co m m en t ab ou t ch an g es in fu rn it ur e ar ra n g em en t w hy ? • a re th e p ar ti ci p an ts no t aw ar e of th e ch an g es ? • d o th ey se e th e ch an g es bu t pr ef er no t to co m m en t? • a re th ey w or ri ed ab o u t cr ea ti ng a fu ss ov er it ? d o th ey ca re ? d oe s it m at te r? • l es s st re ss ab o u t se at se le ct io n. • s cr ee n s pr ov id ed a co si er fe el in g an d vi su al ba rr ie r. & . q u al it y st im u la ti o n co m b in ed w it h d if fi cu lt ie s in v is u al , o lf ac to ry an d au d it o ry co n tr o l • n oi se an d st af f w or ki ng in th e ki tc he n pr om pt s th e u se of sc re en s, w hi ch w er e u se d as pr op s fo r in fo rm at io n as w el l. • b an n er s hu ng fr om th e ce il in g ca u se d no co m m en t: w er e th ey no ti ce d? . o v er p o p u la te d ac ti v it ie s • e as ie r to ap p ro ac h p ar ti ci p an ts fr om th e fr on t. • e as ie r fo r p ar ti ci p an ts to fo llo w in st ru cl io ns . a cc or di ng to o n e pa rt ic ip an t: “s ee in g m ak es h ea ri n g b et te r. • e as ie r to m ai nt ai n di re ct ey e co nt ac t • e qu al d is ta n ce to ea ch pa rt ic ip an t. t h re e o u ts ta n d in g is su e s ar e st il l u n re so lv ed : • g ro u p is to o la rg e. • l ac k of ap p ro p ri at e sp ac e fo r co nc ur re nt ac ti vi ti es . • n o sp ac e to di vi de th e gr ou p in to hi gh er an d lo w er fu nc ti on in g in di vi du al s as n ee d ed . . f ac il it at o r’ s is su e s • d if fi cu lt ie s in m ov in g ch ai rs ar ou nd . • u -s h ap ed ta b le ar ra n g em en t se em s to w or k w el l. c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d al ia g o tt li eb .. t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri tis h c ol um bi a v an co u v er , b c . l e g e n d c lo se -u p p ro bl em c am er a , ‘ v is ua l w i d e s ho t % !q ) d is tr ac ti on c am er a l. l on g t ab le c am er am an ( . x ”) m m ed .t ab le m us ic ia n ( . x ”) r es ea rc h er c c ar d t ab le ( x ” ) p a r t ic ip a n t s q u o t e s s o n ia : i’ m on e of th e gr ou p. ja ck : t hi s lo o k s li ke m y w if e’ s pi an o; sh e h ad a p ia n o li ke th is w he n sh e w as y ea rs ol d. t o b y : it ’s n o t di st ur bi ng us , i th in k ft’ s w on de rf ul ... f e el s co si er (c o m m en t o n ta b le al ra n g em en t) . b ar n ey : i th o u g h t it w as ve ry g o o d an d th e m o v em en t w as ve ry in te re st in g. ... l ’c ha im a d u lt d ay c ar e c en tr e v an co u v er je w is h c o m m u n it y c en tr e s e s s io n - r e p e a t e d m u s ic ju n e , u - s h a p e d r o o m di vi de r l c - (i n d is se rt at io n p. ) session three — friendship ra ran screen resting) area i,i p ii ciws ‘ carpet researchers table c . c c : t storage g’ figure : session three — friendship see drawings lc — a and b a — detached dining tables b — back to a u-shape arrangement with opening facing main entrance. • ...i c. .• .c c — : . sl l :..: ? • • j ? u-shape b . environmental cues smaller tables detached from each other resemble the setup for a dinner activity, a restaurant or other social gathering . safety and security • difficulties in negotiating access to the various tables keyboard flip chart fishtank - p - - linoleum — jnew location flop notice . ’ r rard _p ‘- c — •. . ,_ •• - - c session a food trolley s garbage side table kitchen f lounge area carpet i / ’-o • —.• -, “t-k i / • the seemingly chaotic layout caused some confusion and lingering decisions about where to sit and with whom . familiarity and continuity of self and social interaction • detached tables seemed to create artificial groupings that affected the social needs of the participants. this layout seemed to inconvenience some participants who were reluctant to sit with some and happier sitting with others . quality stimulation • difficulties in reaching participants who sat in various directions and distances • difficulties in seeing each other or seeing the researcher comfortably • this arrangement is not efficient for distributing art supplies • limitation in how much participants are exposed to one another when engaged in creative expression activities; limited opportunities for interaction . difficulties in visual, olfactory and auditory control all previous difficulties remain: • no sound or visual separation from the kitchen • no sound or visual separation from main entrance • no visual or discreet access to the washroom • no clear location for the notice board, the flipchart or the facilitator in addition to these difficulties, it seems that the detached tables only increased the intensity of the problems. . overpopulated activities • detached and scattered tables seem to give an impression that the group is bigger, since ample space must be provided for circulation around each table • there was no sense of order since the tables were staggered to allow people to get in and out of the chairs easily or with help from staff • this arrangement was suited for small group interaction . staff issues • as a facilitator did not feel totally in control. there was very little eye contact with some of the participants • there were difficulties in moving from table to table • there was a need to repeat instructions several times • there was no atmosphere conducive to learning as a result of the difficulties this arrangement produced, i decided to change the tables mid-session back to a u-shaped layout (see drawing lc — b) to see if participants liked it better. only one person did not like the idea of getting up and waiting for the change to take place. that person later agreed it was a good move. n o te s f ro m v id eo a n a ly si s w s (w id e sh o t) s e ss io n - f ri en d sh ip ju ly , . e n v ir o n m en ta l c u e s • s m al le r ta b le s se p ar at ed fr om ea ch ot he r ar e in ap p ro p ri at e fo r th is ac ti vi ty . . s af et y an d se cu ri ty • d if fi cu lt ie s in ac ce ss in g va ri ou s ta b le s. • c on fu si on an d li ng er in g d ec is io n s ab ou t w h er e to si t an d w ith w ho m . . f am il ia ri ty an d co n ti n u it y o f se lf an d so ci al in te ra ct io n • s ep ar at ed ta b le s se em ed to cr ea te ar tif ic ia l gr ou pi ng s. . q u al it y st im u la ti o n • d if fi cu lt ie s in re ac h in g pa rt ic ip an ts . • d if fi cu lt ie s in se ei n g ea ch ot he r. • l ay ou t no t ef fi ci en t fo r di st ri bu ti ng ar t su pp li es . • l im it ed in te ra ct io n w it h an d ex p o su re to o th er s. . d if fi cu lt ie s in v is u al , o lf ac to ry an d au d it o ry co n tr o l • a ll p re v io u s di ff ic ul ti es st ill re m ai n. . o v er p o p u la te d ac ti v it ie s • t ab le ar ra n g em en t g iv es im pr es si on of a b ig g er gr ou p. • n ee d fo r am p le ci rc ul at io n sp ac e ar ou nd ea ch ta bl e. • n o se n se of or de r. • c ou ld w or k fo r sm al l gr ou p ac ti vi ti es . . f ac tl it at o i’ s is su e s • v er y lit tle ey e co n ta ct w ith so m e of th e pa rt ic ip an ts . • d if fi cu lt ie s in m ov in g ar ou nd . • n ee d to re p ea t in st ru ct io ns se v er al ti m es . a tm o sp h er e no t co n d u ci v e to br ai ns to rm in g an d le ar ni ng . c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d al la g o tt li eb -t an ak s, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri tis h c ol um bi a v an co u v er , b c . l e g e n d c lo se -u p ® p ro bl em c am er a f ’ v is ua l w i d e s ho t d is tr ac ti on c am er a l l on g t ab le c am er am an ( . ”x ) m m ed .t ab le m us ic ia n ( . x r) r es ea rc h er c c ar d t ab le ( x ’) p a r t ic ip a n t s ’ q u o t e s t ob y: w he n yo u n ee d th em , a fr ie nd in n ee d is a fr ie nd in de ed . s o fi a : h e is si tt in g w ith hi s b ac k to m e. a n it a: t hi s is w h at ! w an te d to sa y - th at th is ki nd of ro om is no t g o o d fo r da nc in g. t he y h av e a ro om w he re th ey zi p up th e ca rp et an d th ey h av e a d an ce fl oo r. l ’c ha im a d u lt d ay c ar e c en tr e v an co u v er je w is h c o m m u n it y c en tr e s e s s io n - f ri en d sh ip ju ly , s e p a ra te d t ab le s - a u -s h a p e d - b s p a c e is su es : p o et ry se ss io n l c - a & b (i n d is se rt at io n p. ) session four— bending wires. strength versus weakness figure : session four — bending wires. strength versus weakness see drawing lc- triangle the triangle formation was just a slight deviation from the u-shape layout but i got an uncomfortable feeling when interacting with the participants. there was an unsettled feeling about it, which is hard to describe. perhaps the angles did not appeal to the sense of order and aesthetics. . familiarity and continuity of self and social interaction • ira did not want to select a seat until sonia arrived and then she joined her • participants seemed to have fewer problems in selecting a seat with this triangle-shaped formation than in the detached arrangement • i seemed to neglect the people on my right, which caused them to be less engaged. the two people with dementia on the right seemed very quiet. however, the participant with no dementia took initiatives to be part of the session . difficulties in visual, olfactory and auditory control • one senior with no dementia moved from his chair at the table to the window where he could face the musician when she played the violin and the piano. two seniors with dementia sat with their backs to the musician and stayed in that position until the end of the session, except for one, who did get up, moved around and went back to the same seat. washroom cu administration office food trolley flip chart — resting area was used as a temporary storage place new location ! of notice board r . • . l ,; ‘ p fishtank - . rattan - screen s r ‘.•. n — resting area h — — a _____________ carpet linoleum garbage si de table kitchen f . ‘“ a carpet i storage -‘ i deck -o ‘ . - lounge area . overpopulated activities due to the large number of participants, not all participants with dementia got the attention they needed. one participant with dementia, who was struggling with bending wires into a - dimensional shape, insisted on anchoring the edges of the wire into the table top she was working on. although i came prepared with foam blocks for such a situation, i did not remember to offer them to her. the intention was to see if the participant could manage without the blocks. i was so busy due to the large group that i did not follow up on the participant’s progress when she needed help. . staff issues • i was not at ease with the furniture arrangement in the shape of a triangle. the angles did not appeal to her sense of order. there was a constant need to push the tables from the degree formation back to a u-shape arrangement of degrees. n o te s f ro m v id eo a n al y si s w s (w id e sh o t) s e ss io n - b en d in g w ir es s tr e n g th v e rs u s w e a k e n ss ju ly , s p a c e is su es : . f am il ia ri ty an d co n ti n u it y of se lf an d so ci al in te ra ct io n • t ab le ar ra n g em en t cr ea te d st re ss in se le ct in g se at s. • p ar ti ci p an ts se em ed to h av e fe w er pr ob le m s in se le ct in g a se a t w it h th is tr ia ng le -s ha pe d fo rm at io n th an w it h se p ar at ed ta bl es . • f ac il it at or se em ed to n eg le ct pa rt ic ip an ts on h er ri gh t. . d if fi cu lt ie s in v is u al , ol fa ct or y an d au d it o ry co n tr o l • d if fi cu lt ie s in fa ci ng m us ic ia n; so m e p ar ti ci p an ts m ov ed , o th er s st ay ed in pl ac e. . o v er p o p u la te d ac ti v it ie s • d ue to la rg e n u m b er of pa rt ic ip an ts , no t al l p ar ti ci p an ts w it h d em en ti a go t th e at te nt io n th ey n ee d ed . . f a c il it a to rs is su e s • iw as no t at e a se w it h th e fu m it ur e ar ra n g em en t in th e sh ap e of a tr ia ng le . v io lin h ol di ng c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d al la g o tt ll eb -t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri ti sh c ol um bi a v an co u v er , b c . l e g e n d c lo se -u p ® p ro bl em c am er a ( v is ua l n i d e s ho t d is tr ac ti o n c am er a l l on g t ab le c am er am an ( . s ’x ’) m m ed .t ab le ( ) m us ic ia n ( . x r) r es ea rc h er c c ar d t ab le ( ’ x ’) p a r t ic ip a n t s ’ q u o t e s w h at is c re a ti v it y ? t o b y : c re at iv it y is w he n yo u cr ea te so m et hi ng th at m ak es pe op le ha pp y. a n it a: r ea ct in g to a si tu at io n. ju n e : w e ca n se e th e o th er s an d w e ca n se e yo u (c o m m en ta ry on fu rn itu re ar ra n g em en t) . m ic he l: t he o ld er y o u b ec o m e th e m o re cr ea ti v e yo u b ec o m e. l ’c ha im a d u lt d ay c ar e c en tr e v an co u v er je w is h c o m m u n it y c en tr e s e s s io n - b e n d in g w ir e s s t r e n g t h v e r s u s w e a k n e s s ju ly , t ri an g le l c - (i n d is se rt at io n p. ) v io lin h ol di ng v io lin h ol di ng -i b en di ng w in es b en d in g w ir es session five — designing creative expression studio figure : session five — designing creative expression studio see drawing lc - . safety and security • wood floor is preferable to carpet • washrooms need to be close by . familiarity and continuity of self and social interaction • participants prefer to see the researcher sit and not stand . quality stimulation • being tucked away and separated temporarily by a rattan screen reduced interruption from visitors . difficulties in visual, olfactory and auditory control • the intensity and direction of the lights brought comments such as: — an object against the light looks dark with no details — sharp lights cause pain and glare — seeing improves hearing — windows are important but where to place them depends on the use of the space — when working on white surfaces such as white paper, lights need to be dimmed . overpopulated activities a need to reduce the number of tables to fit a smaller group . staff issues • closing the distance between a facilitator and the participants plays an important role in establishing better interaction keyboard radio stand — rattan spotlight screen linoleum food trolley m : l - l . •% fishtank m m: li researchers table.: c resting’ — new loga on area of notice board cu deck -o carpet p . -v. - •- . - garbage side table kitchen v f “a as . lounge area carpet . s. . i storage v v = - - - , a._ -ve n o te s f ro m v id eo a n a ly si s w s (w id e sh o t) s e ss io n - d e si g n in g c re a ti v e e x p re ss io n s tu d io ju ly , s p a c e is su e s: . e n v ir o n m en ta l c u e s n ot en o u g h en v ir o n m en ta l c u e s to p ro m p t d es ig n ac ti vi ty . . s af et y an d se c u ri ty • w oo d fl oo r is p re fe ra b le to ca rp et . • w as h ro o m s n ee d to b e cl o se by . . f am il ia ri ty an d co n ti n u it y o f se lf an d so ci al in te ra ct io n • p ar ti ci p an ts p re fe r to se e fa ci li ta to r/ re se ar ch er si t an d no t st an d . . q u al it y st im u la ti o n • b ei ng tu ck ed aw ay an d se p a ra te d te m p o ra ri ly by a ra tt an sc re e n re d u ce d in te rr u p ti o n fr om vi si to rs . . d if fi cu lt ie s in v is u al , o lf ac to ry an d au d it o ry co n tr o l • t h e in te ns it y an d di re ct io n of th e li gh ts br ou gh t th es e co m m en ts : . an o b je ct ag ai n st th e li gh t lo ok s da rk w it h no d et ai ls . sh ar p li gh ts c a u se p ai n an d g la re . se ei n g im p ro v es h ea ri n g . w in d o w s ar e im p o rt an t b u t w h er e to p la ce th em d e p e n d s on th e u se o f th e sp a c e . w h en w o rk in g on w h it e su rf ac es , su ch as w hi te p ap er , li gh ts n ee d to be di m m ed . o v er p o p u la te d ac ti v it ie s • r ed u ce d n em b er of ta b le s h el p ed to fi t a sm al le r g ro u p . . f ac il it at o r’ s is su e s • c lo si ng th e d is ta n ce b et w ee n fa ci li ta to r an d p ar ti ci p an ts en co u ra g es b et te r in te ra ct io n. e c re at iv it y , d em en ti a a n d th e t h e ra p e u ti c e n v ir o n m e n t d an a g o tt li eb -t an ak a, m a rc h p h d c an d id at e in te rd is ci pl in ar y p ro g ra m u n iv er si ty of b ri ti sh c o lu m b ia v an co u v er , b c . l e g e n d c lo se -u p ® p ro b le m c am er a v is ua l w i d e s h o t a d is tr ac ti o n c am er a c l on g t ab le c am er am an ( . ” x ” ) m m ed .t ab le m us ic ia n ( . ” x ” ) r e se a rc h e r c c ar d t ab le ( ” x ”) p a r t ic ip a n t s q u o t e s w h at is a rt ? a n it a: y ou b ec o m e o n e w it h th e b o o k y o u ar e re ad in g . a v : c re at iv e ex p re ss io n is a to t o f th in g s. a n it a: i lo v ed it. ir ea ll y en jo y th at w e h av e to th in k w he n y o u ta lk to us . it m ak es m e th in k ab o u t p la ce s. t he lo o k s o f th em th e u se o f th em . s o m et h in g i h av e n ev er do ne . l c h a im a d u lt d ay c ar e c e n tr e v an co u v er je w is h c o m m u n it y c en tr e s e s s io n - d e s ig n in g c r e a t iv e e x p r e s s io n s t u d io ju ly , li -s h a p e d l a y o u t t u r n e d a r o u n d l c - l’chaim centre — suggested design resolutions drawing lc — is the result of all the knowledge and understanding accumulated thus far on dementia as a medical condition, how it impacts the psychosocial behaviour of older people with dementia, how it impacts families and caregivers and the facilities that serve dementia clients. while it would have been highly desirable to design a new centre for l’chaim’s clients, reality calls for very modest changes that can be achieved in a reasonable time, within a tight budget and without having to close the centre. some interior changes did take place during this study, which were based on preliminary recommendations. what follows is a more extensive list of comments and design resolutions. the following checklist is based on moore, geboy, weisman and mieziva ( ) and was adapted to fit this study. while i agree with them on the importance of quality stimulation, i disagree with their assertion that specific activities such as movement, thinlcing, psychosocial and spiritual activities (p. ) need to be undertaken separately and carried out in different spaces. for example, the program on creative expression activities calls for the opposite approach, where the various activities are combined in one session to allow a full exposure to all senses and abilities at the same time. in other words, instead of moving the seniors from room to room, i chose to bring the activities to the seniors and change the environment around them. of course, there is room for flexibility and combinations of space and activities. however, the main thrust of the creative expression activities program is to create a rich environment with the most opportunities to be exposed to experiences that build upon each other. the creative expression activities program can take place in small spaces so long as the main philosophical approach is followed. knowing the kind of activities and how they are conducted will shape the architectural envelop and its design. the final chapter in the moore, geboy, weisman and mleziva ( ) study is based on a comprehensive evaluation guide for design considerations for adult day centres. i selected it to guide my design resolution for the l’chaim centre as a framework or checklist. some outdoor issues were omitted although their inclusion in a complete and comprehensive design are very important. coming and going first impression • although the l’chaim centre has undergone major renovations in recent years, the entrance to the centre, which is located within the jewish community centre, is too far removed from the main entrance to the building. a back door is located closer to the centre’s main entrance but it remains closed for security reasons. staff recognizes the problem and stands vigilant to open the back door when the handidart bus arrives with the clients. it adds pressure since staff needs to stop whatever they are doing when the bus arrives to let the clients in by the shortest route. • this route is not weather protected and could use a canopy sense of arrival and departure • there is no reception area that separates the entry from the main program space • the existing corridor is too long and does not act as a buffer or transition zone separating the public, semi-public and private areas • the main doors are made of heavy metal, which is typical of institutions such as hospitals and jails • there are no welcoming architectural solutions. however, staff is extremely friendly and goes out of their way to welcome the arriving clients • clients get help to take off their coats, only as needed • there is no designated space to store walkers, wheelchairs or canes • there is no direct and immediate space for hanging coats • there is a toilet near the entrance suggested design resolutions • create a reception area that welcomes the clients or anyone visiting the centre • provide space for coffee or tea, which clients could serve themselves under the supervision of staff • provide a semi-private place where clients could meet their visitors or take a break away from the main activity room • provide control of the security and safety of the centre by technology or by staff monitoring the people who come into the centre • change the front doors to glass doors to allow light and visual contact with the outside activity settings general features of actiwty settings • there is a pleasant view to the outdoors • there is no efficient separation of spaces for various concurrent activities or for various group sizes • extra chairs are lined up along the periphery of the room • toilets are easy to find and located nearby; however, access to them is not discreetly designed • there is plenty of natural light. glare from outside is controlled by blinds • the interior glare due to poor lighting is a major issue • there is very little attention to plants and their maintenance • recliners are provided in the rest area and in the lounge area • there is no specific area for clients to sit and observe an activity without taking part in it. however, in an open space model, activities can be watched from every corner of the room. the downside is the lack of privacy, even for an activity such as watching. suggested design resolutions • increase the amount of plants and their maintenance • remove old wood furniture on the deck or replace it with new easy-care outdoor furniture • find storage for extra chairs not in use • adjust the intensity and color of interior lights to suit the various activities, whether they are task- oriented, or used for ambience and relaxation = • the access to toilets needs to be designed more discreetly • add some space from the adjacent hail to ease the need for space division for concurrent activities dining • there is no separate space for dining suggested design resolutions • staff already does what it can to give a distinct flavour to the dining activity. they change the positions of the tables, cover them with tablecloths and set them with good dishes and cutlery. however, moore et al. ( ) suggest that the furniture be arranged so that clients can choose whom to sit with. this is similar to the furniture layout in session in this study. kitchen and kitchen work • moore et al. ( ) suggest using an open kitchen plan, which is accessible to all and has a residential feel to it. however, the activity in the kitchen may act as a disturbance when activities outside the kitchen are in progress. suggested design resolutions • partially close off the kitchen area by providing pony walls that are not of full height • hide the garbage container yet make it accessible b change the kitchen look from an institutional one to a residential one • leave large openings to the kitchen with no doors indoor walking and wandering in combination with outdoor activity • walking is a much needed activity to relieve stress that contributes to “social stimulation ... and environmental variety” (p. ). the l’chaim centre was not planned to accommodate a wandering path and the existing tight space is insufficient to allow it. however, many of the clients live nearby and they walk over by themselves or with their caregivers. suggested design resolution • in future plans for expansion, designs should take the walking and wandering path into account. the existing deck could be adjusted to provide some of these opportunities: — secured outdoor walking and wandering path — comfortable seats to enjoy the outside — interesting and stimulating focal points — weather protection solutions — large pots to enrich the plant selections physical and related support activities • moore et al. ( ) suggest (p. ) an open space suitable for use by up to people for physical and other therapies. the present space can accommodate this • there is no efficient private space for private therapies • there is not enough storage space available suggested design resolutions • provide a separate room for nursing activities • provide storage space wherever possible, whether in low cupboards under the windows, or along the walls, or in linen closets. in general, upgrade all of the existing office furniture and kitchen cupboards. n o te s f o r p ro p o se d p la n f w st im p re ss io n • e n tr an ce to ac ti vi ty ro om is lo ca te d to o fa r fr om th e m ai n en tr an ce to th e bu ild in g. • a cc es s is no t w ea th er pr ot ec te d. s e n se o f ar ri v al an d d ep ar tu re • n o re ce p ti o n ar ea th at se p ar at es th e en tr an ce fr om th e m ai n ac ti vi ty sp ac e. • e xi st in g co rr id or ar e to o lo ng . t he y do no t ac t as a bu ff er se p ar at in g th e pu bl ic , se m i- pu bl ic an d pr iv at e ar aa s. • m ai n d o o rs ar e to o h ea v y an d in st it ut io na l lo ok in g. • n o w el co m in g ar ch it ec tu ra l so lu ti on s. • h el p in ta ki ng of f co at s on a n ee d b as is on ly . • n o sp ac e to st o re w al ke rs , w he el ch ai rs or ca n es . • n o di re ct an d im m ed ia te sp ac e fo r ha ng in g co at s. • t h er e is a to il et n ea r th e en tr an ce . s u g g e st e d d es ig n re so lu ti o n s: • c re at e a w el co m in g re ce pt io n ar ea . • p ro vi de an op po rt un it y fo r co ff ee or te a. • p ro vi de se m i- p ri v at e p la ce to m ee t an d ta k e a b re ak aw ay fr om th e m ai n ac ti vi ty ro om . • p ro vi de se cu ri ty an d sa fe ty co nt ro ls . • c h an g e th e fr on t d o o rs to g la ss do or s to al lo w lig ht an d vi su al ac ce ss w ith th e ou ts id e. a ct iv it y s et ti n g s g en er al fe a tu re s o f ac ti v it y se tt in g s • t h er e is a p le as an t vi ew of th e ou td oo rs . • t h er e is no ph ys ic al se p ar at io n fo r va ri ou s co n cu rr en t ac ti vi ti es or fo r va ri ou s gr ou p si ze s. • e xt ra ch ai rs ar e li ne d up al on g th e pe ri ph er y of th e ro om . • t oi le ts ar e ea sy to ri nd an d cl o se by bu t th ei r a c c e ss is no t di sc re et ly d es ig n ed . • t h er e is pl en ty of n at u ra l lig ht . g la re fr om th e o u ts id e is co nt ro ll ed by bl in ds . • in te ri or gl ar e d u e to po or lig ht in g is a m aj or co n ce rn . • t h er e is v er y lit tle at te nt io n to in do or pl an ts . • t h er e ar e re cl in er s in th e re st ar ea an d lo un ge ar ea . s u g g e st e d d es ig n re so lu ti o n s: • in cr ea se th e n u m b er of pl an ts an d th ei r m ai n te n an ce . • r ep la ce ol d w oo d fu rn it ur e on th e de ck w ith ea sy -c ar e ou td oo r fu rn it ur e. • f in d st o ra g e fo r ex tr a ch ai rs no t in us e. • a dj us t in te ri or li gh ts to su it th e va ri ou s ac ti vi ti es • a dd so m e sp ac e fr om ad ja ce n t ha il to ea se th e n ee d fo r sp ac e se p ar at io n fo r co nc ur re nt ac ti vi ti e. c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d al ia g o tt li eb -t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri ti sh c ol um bi a v an co u v er , b c . p ro p o se d st ai n g la ss d o o rs fo r m ai n en tr an ce d o o rs l ’c ha im a d u lt d ay c ar e c en tr e v an co u v er je w is h c o m m u n it y c en tr e a u g u st , p r o p o s e d f l o o r pl a n in cr ea se th e n u m b er of p la n ts .) c l& l l a f l a e p - z l -e e n w ’r ,e - - g .l . e n f p f ? ’ tl m .i a s - i l e e -- - ‘ . r ep la ce ol d w oo d fu rn it ur e on th e de ck w it h ea sy -c ar e o u td o o r f u m (l ur e l c - a (i n d is se rt at io n p. ) c a) o - a) a) oa) ,.: - .c i i—w( a) i c.) ‘fl drawing lc — b: proposed floor plan at the l’chaim adult day care centre a., mmn entrance pi.m. doors - :. reiatt)n i patre.j . waiwj m ..: — ., v .:: meeting area - stanedglass rs v i ,: new tatmep t existing washroom v existing i administration v office v movat.e - tv - - faitt)n boapd tvow stcri screen ce l n( otec . v ‘ new doors “ . - c.ivwau. : v existing v.- .,.. v . vv . -—- movle — scct rl - — -- - v - part lion pqj statons - v lounge c ‘jy v v tv - . . lwstorag _newpoors_ — deck atter drawing lc — c: proposed floor covering design — implemented at the l’chaim adult day care centre mai n entrance storage washroomi .,. corridcr . staff office nurse fr > administration office f trfl(j f - washroom program area fi i- am resting area h d€ck p -, . ._t ,,z_ -. -s. g*oe side ta&e kitchen une of cxsting linoleia - — -‘ lounge -: area ’ .+ ded( - n o te s f o r p ro p o se d f lo o r p la n • t h er e is no se p ar at e sp ac e fo r di ni ng s u g g e st e d d es ig n re so lu ti o n s: • s ta ff al re ad y d o es w h at it ca n to gi ve a di st in ct fl av ou r to th e di ni ng ac ti vi ty by m ov in g fu rn it ur e ar o u n d an d u si n g ta b le cl ot h. h ow ev er . m oo re et at . re co m m en d s ar ra n g in g th e fu rn it ur e in a w ay th at le ts cl ie nt s ch o o se w ho to si t w ith . k it ch en an d k it ch en w o rk : m oo re at at . su g g es t an o p en ld tc he n, w hi ch is ac ce ss ib le to al l an d h as a re si de nt ia l fe el to it. h ow ev er , ac ti vi ty in th e ki tc tw n ca n di st ra ct fr om ac ti vi ti es go in g on ou ts id e th e ki tc he n. s u g g e st e d d es ig n re so lu ti o n s: • p ar ti al ly en cl o se th e ki tc he n ar ea . • h id e th e g ar b ag e co nt ai ne r. • c h an g e th e k it ch en s in st it ut io na l lo ok to a re si de nt ia l on e. • l ea v e la rg e o p en in g s to th e ki tc he n ar ea . in d o o r w al k in g an d w an d er in g in co m b in at io n w it h o u td o o r ac tm ty • w al ki ng is a m uc h n ee d ed ac ti vi ty to re li ev e st re ss . t h e l ’c ha im c en tr e w as no t pl an ne d to ac co m m o d at e a w an d er in g pa th an d th e ex is ti ng sp ac e is to o ti gh t s u g g e st e d d es ig n re so lu ti o n s fo r fu tu re ex p an si o n : • p ro vi de se cu re o u td o o r w al ki ng an d w an de ri ng pa th . • p ro vi de co m fo rt ab le se a ts to en jo y th e sc en e ou ts id e. - • p ro vi de in te re st in g an d st im ul at in g fo ca l po in ts . • p ro vi de co v er ed ar ea s fo r w ea th er pr ot ec ti on . • e nr ic h th e p la n ts se le ct io n s us in g la rg e po ts . p h y si ca l an d re la te d su p p o rt ac ti v it ie s • p re se n t o p en sp ac e ca n ac co m m o d at e up to p eo p le fo r ph ys ic al an d ot he r th er ap ie s. • t h er e is no ef fi ci en t pr iv at e sp ac e fo r pr iv at e th er ap ie s. • t h er e is no t en o u g h st o ra g es p ac e. s u g g e st e d d es ig n re so lu ti o n s: • p ro v id e a se p ar at e ro om fo r nu rs in g ac ti vi ti es . • p ro v id e st o ra g e sp ac e w h er ev er po ss ib le , in lo w cu p b o ar d s u n d er th e w in do w s, al on g th e w al ls an d in li ne n cl o se ts . in ge ne ra l, u p g ra d e al l ex is ti ng of fi ce fu rn it ur e an d ki tc he n cu p b o ar d s. c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d al ia g o tt li eb -t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri ti sh c ol um bi a v an co u v er , b c . l e g e n d n e w l in o l e u m c o l o r p a t t e r n f ie ld s te p p in g s to n e l ’c ha im a d u lt d ay c ar e c en tr e v an co u v er je w is h c o m m u n it y c en tr e a u g u st , n e w f l o o r pl a n a s -b u il t l c - c (i n d is se rt at io n p. ) margaret fulton adult day care centre identifying space problems. margaret fulton centre is an appealing facility, which is nestled within a beautiful setting. one visit to the centre would not have revealed the minor problems that surfaced when conducting the creative expression activities. the following comments need to be reviewed along with drawings mf - . ‘ furniture arrangements: sessions one to four fliiohmt / figure : session one - friendship see drawing mf — i (small room in the back) two tables are arranged into l shape ( feet wide by feet long) room size: ft by ft. session one — friendship countr& sim( tv $tni) tcked cias • ic. - * sr - - : : . syst. a s - . environmental cues • cues for the topic were displayed on the tables. no other cues were provided • no access to the outdoor which was very attractive • no sufficient space for circulation, wheelchairs or walkers • no sufficient air circulation. southern orientation. too hot in the summer . safety and security • no room to dance and turn safely, although floor finishes appropriate for dancing • the researcher was in control of the room’s exist using the entry door • insufficient space for this activity for more than participants unless some furniture was removed . familiarity and continuity of self and social interaction • participants were divided into english and spanish speaking women. no interaction was exhibited • strong bond between the english speaking women with one of them leading the group • strong bond and gentle interaction between the spanish speaking women a strong bond and familiarity with staff • only the spanish women acknowledge remembering me. the sense of familiarity with the english speaking women was not felt nor established . quality stimulation • quality stimulation was under control since the room was closed to others and participants could concentrate on their tasks to their best abilities . difficulties in visual, olfactory and auditory control • there were no difficulties in visual, olfactory and auditory control . overpopulated activities • no sufficient solutions to display objects close by • no sufficient solutions to display extra sheets of the flipchart close by • too many participants ( ) could be ideal under existing circumstances . staff issues • staff had difficulties reaching participants from behind to help with art activity n o te s f ro m v id eo a n al y si s w s (w id e sh o t) s e ss io n o n e - f ri en d sh ip s p ac e is su es o bj ec ts on di sp la y n ee d to be p la ce d in d o se pr ox im it y to pa rt ic ip an ts to at tr ac t th ei r at te nt io n. l im it th e di st an ce up to ap pr ox im at el y fe et fr om w h er e th e pa rt ic ip an ts si t. . a llo w su ff ic ie nt sp ac e fo r ci rc ul at io n ar ou nd th et ab le , ea sy ac ce ss to pa rt ic ip an ts an d ca re g iv er s, w he el ch ai r ac ce ss ib il it y an d st o ra g e fo r w al ke rs . b et te r ai r ci rc ul at io n. t he ro om w as to o sm al l an d to o ho t. . t h e vi ew fr om th e ro om is m ag ni fi ce nt . in cl ud e th e vi ew in ch an g es to br in g th e ou ts id e in ; d es ig n a ba lc on y to ex p an d th e ro om , ph ys ic al ly an d vi su al ly . a c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d an a g o tt il eb -t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri tis h c ol um bi a v an co uv er , b c . l e g e n d s ta ff c lo se -u p ce ) p ro bl em c am er a v is ua l w i d e s ho t d is tr ac ti on c am er a l l on g t ab le c am er am an ( . ” x ” ) m m ed .t ab le m us ic ia n ( . ”x ) r es ea rc h er c c ar d t ab ie pa r t ic ip a n t s ’ q u o t e s jo an (s ta ff ); i do n? th in k th ey u n d er st an d ev er yt hi ng th at w as go in g ar ou nd , bu t th ey lo ve d w ha t th ey w er e do in g. m ar g ar et f u lt o n a d u lt d ay c ar e c en tr e n or th v an co uv er s e s s io n i - f r ie n d s h ip ju n e , s m a l l r o o m in t h e b a c k s et ti ng th e ro om -n or th e w s o u th vi ew of do w nt ow n v an co uv er e xt er io r of b ui ld in g- nw vi ew m f - (in d is se rt at io n p. ) session two — music, dancing, poem writing and card decoration designing a dancing floor outdoor therapy room wandering pathway r ix i l z r o ia% o rc i i is portasle pa washroom figure : session two - music see drawing mf— (art therapy room) two tables side by side creating one table ( feet wide by feet long) room size: l ftby ft. . environmental cues • there are appropriate cues for an art activity. all art supplies and art work are displayed • a wandering path leads directly through the art room, distracting program participants from concentrating on the topic or on their task. • it is hard to reach participants across two combined tables • there is no room for additional people to perform, dance, or to expand the group • there is a need to reach a fine balance between having ample room for circulation and at the same time providing a more intimate setting with a feeing of closeness • the room needs movable partitions and movable furniture • good contact with the outside • access to the washroom is near by, however it opens directly into an activity area • no observation area for people who would like to watch from a distance or work their way into an activity at their own pace would be an asset garden furniture storage c art therapy room cu ws [ screen w i_i.i ‘s rest s roommusicstand — ’ $ —i’ - - i flip chart p s - - / wandering pathway —i washroom .-a. storage . safety and security b it is not an issue in this centre since it is being addressed through the whole facility • it includes controlled main exist, fence around the garden, trained staff to watch for safety problems . familiarity and continuity of self and social interaction • same as in session one on friendship. except one english speaking woman who joined the group only once did try to communicate with one of the spanish speaking woman. . quality stimulation • no quality stimulation control until the walking ceased around the space . difficulties in visual and auditory control • too many disturbances by other clients of the centre • there is very poor acoustic separation from other activities in the centre . overpopulated activities • area was too small for participants, staff and musician . staff issues • a multi-activity program needs more than one person leading the session n o te s f ro m v id eo a n al y si s w s (w id e sh o t) s e ss io n t w o - d es ig n in g a d an ce s p a c e is su es f lo o r a w an de ri ng pa th le ad s di re ct ly th ro ug h th e ar t ro om , di st ra ct in g pr og ra m pa rt ic ip an ts fr om co nc en tr at in g on th e to pi c or on th ei r ta sk . . t h er e is ve ry po or ac o u st ic se p ar at io n fr om o th er ac ti vi ti es in th e ce nt re . . a m ul ti -a ct iv it y pr og ra m n ee d s m or e th an o n e p er so n le ad in g th e se ss io n ; th is ha s im pl ic at io ns fo r sp ac e re qu ir em en ts . . it is ha rd to re ac h pa rt ic ip an ts ac ro ss tw o co m bi ne d ta b le s. . t h er e is no ro om fo r ad di ti on al pe op le to pe rf or m , d an ce , or to ex p an d th e gr ou p. . t he re is a n ee d to re ac h a fi ne ba la nc e be tw ee n ha vi ng am p le ro om fo r ci rc ul at io n an d at th e sa m e ti m e pr ov id in g a m or e in ti m at e se ll in g w ith a fe ei ng of cl o se n es s. . t he ro om n ee d s m ov ab le pa rt it io ns an d m ov ab le fu rn it ur e. . c on ta ct w ith th e ou ts id e is cr uc ia l to fe el in g go od , co n n ec te d an d no t im pr is on ed . . a cc es s to th e w as h ro o m sh ou ld be pl an ne d in a m or e d is cr ee t w ay , w h er e th e do or d o es no t o p en di re ct ly in to an ac ti vi ty th at is ta ki ng pl ac e. t he w as h ro o m ca n st ill be si tu at ed ne ar by , bu t so m ew h at re m ov ed . . a n o b se rv at io n ar ea fo r pe op le w ho w ou ld lik e to w at ch fr om a d is ta n ce or w or k th ei r w ay in to an ac ti vi ty at th ei r ow n p ac e w ou ld be an as se t. n c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d al ia g o tt il eb -t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri tis h c ol um bi a v an co uv er , b c . l e g e n d s ta ff c lo se -u p p ro bl em c am er a p v is ua l w i d e s h o t d is tr ac ti on c am er a l l on g t ab le c am er am an ( . ” x ” ) m m ed t ab le m us ic ia n ( . x r) r es ea rc h er c p a r t ic ip a n t s ’ q u o t e s m il dr ed : t he vi ol in is a be au ti fu l in st ru m en t. d an a: m ar ga re t, w hy do w e n ee d a sm o o th fl oo r? m ar ag re t: s o yo u ca n do w h at ev er yo u do (s ho w in g tw ir ls w ith h er ha nd ). m il dr ed : s o m e m us ic m ak es m e cr y. m ar g ar et f u lt o n a d u lt d ay c ar e c en tr e n o rt h v an co u v er s e s s io n - d e s ig n in g a d a n c e f l o o r ju ly , a r t t h e r a p y r o o m o ut do or w an d en n g p at h w es t rr le w r o o f o v e r h a n g p a tw w a z e b o w e w w a n o e r i n g - .- - - - - — pa t h w a y m f - (in d is se rt at io n p. ) session three — music and drumming ’- zfo coc wd —‘ — — c ) — s,., . -.- h ‘ ,- *___ c’. ljrtya a — figure : session three — music and drumming see drawing mf — (courtyard) two round garden tables ( ft.) area size: same as the art therapy room ft by ft. l environmental cues • drums and a musician provided the only cues for the activity . safety and security • very little issues. however, wheelchairs and walkers were rolling away • there is ample space for walkers and their storage. • being outside exposes participants to cold air, flies and other insects. • the roof’s overhang provides protection from the weather. . familiarity and continuity of self and social interaction • positive reaction to outdoor setting for an activity which is a nice change from indoor activity. participants comment on the fresh air, the larger space and being part of nature. • round table provided more opportunities for social interaction between the participants and between the two groups . quality stimulation • the beauty of the surroundings was soothing and inspiring. • the view of a beautiful garden ties in with the park and the wooded area. • being outside connects participants to the sounds of nature. • sounds of children playing bring positive reactions. • there is ample room for dancing. • some participants could not see the performer. . difficulties in visual and auditory control • expected and therefore it was planned for a noisy activity • children yelling in the park attracted one of the participant’s attention through the all session . overpopulated activities • ample of room for participants and could accommodate additional participants . staff issues • i did not feel enclosed n o te s f ro m v id eo a n al y si s w s (w id e sh o t) s e ss io n t h re e s p a c e is su es . o ut do or se tt in g fo r an ac ti vi ty is a ni ce ch an g e fr om in do or ac ti vi ty . p ar ti ci pa nt s co m m en t on th e fr es h ai r, th e la rg er sp ac e an d be in g pa rt of na tu re . . r ou nd ta bl e pr ov id es be tt er ac ce ss to ea ch pa rt ic ip an t. . t h er e is am pl e sp ac e fo r w al ke rs an d th ei r st o ra g e. . t he re se ar ch er di d no t fe el en cl o se d . . t he b ea u ty of th e su rr ou nd in gs w as so ot hi ng an d in sp ir in g. . t he vi ew of a be au ti fu l g ar d en ti es in w ith th e pa rk an d th e w oo de d ar ea . . b ei ng ou ts id e co n n ec ts pa rt ic ip an ts to th e so u n d s of na tu re . . b ei ng ou ts id e ex p o se s pa rt ic ip an ts to co ld ai r, fl ie s an d o th er in se ct s. . s o u n d s of ch il dr en pl ay in g br in g po si ti ve re ac ti on s. . t h er e is am pl e ro om fo r da nc in g or m ov in g ar ou nd . . s o m e pa rt ic ip an ts co ul d no t se e th e pe rf or m er . . t he ro ot ’s ov er ha ng pr ov id es pr ot ec ti on fr om th e w ea th er . . t h e gr ou nd sl o p es aw ay fo r dr ai na ge ; th e sl o p e n ee d s to be ch an g ed to pr ev en t w h ee lc h ai rs an d w al ke rs fr om ro lli ng aw ay . c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d al la g o tt ll eb -t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri tis h c ol um bi a v an co uv er , b c . l e g e n d s ta ff c lo se -u p p ro bl em c am er a v is ua l w i d e s ho t ‘ d is tr ac ti on c am er a l l on g t ab le c am er am an ( . x ’) m m ed .t ab le m us ic ia n ( . s ’x ”) r es ea rc h er c c ar d t ab le p a r t ic ip a n t s ’ q u o t e s c ar o l: t he re ar e to o m an y p eo p le in th er e. (m ea ni ng sm al l ro om at th e ba ck ) c ar o l: i d o n t li ke th e sm al l ro om . d al la : d id yo u en jo y. y ou sa n g al l al on g. .. c ar o l: t ha t w as w ay b ac k w he n no w i’ m ju st no th in g. m ar g ar et f u lt o n a d u lt d ay c ar e c en tr e n o rt h v an co u v er s e s s io n ju ly , c o u r t y a r d - m u si c & d r u m m in g m f - (i n di ss er ta ti on p. ) v a r t r o o m - ” w r e s t r o o m n scwa figure : session four — massage and the walkout see drawing mf-. (small room in the back) one card table ( ” x ”) room size: ft by ft. . environmental cues massage creams on the table . safety and security no issue . familiarity and continuity of self and social interaction • no doubt the familiarity with the room sparked a walkout • strong presentation of self and one’s desires • strong leadership displayed by one participants influenced others . quality stimulation . difficulties temperature control • the room was stuffy. we used a fan to move the air around. . overpopulated activities • was not an issue . staff issues none of us wanted to be there. the x ft. square table did not work well for physical interaction with participants session four— massage and the walkout c cl’ q /f’ ;: cha rs ’ f n o te s f ro m v id eo a n al y si s w s (w id e sh o t) s es si o n f o u r s p a c e is su es . n on e of us w an te d to be th er e. . t he ro om w as st uf fy . w e u se d a fa n to m ov e th e ai r ar ou nd . . t he x fi. sq u a re ta bl e di d n o t w or k w el l fo r ph ys ic al in te ra ct io n. . it w ou ld be he lp fu l to de si gn a ne w ta b le th at co ul d an sw er m an y n ee d s an d u se s w he n in te ra ct in g w ith se n io rs w ith de m en ti a. c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d an a g o tt ll eb -t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri tis h c ol um bi a v an co uv er , b c . l e g e n d s ta ff c lo se -u p p ro bl em c am er a v is ua l w i d e s ho t f’ d is tr ac ti on c am er a l l on g t ab le c am er am an ( . x “) m m ed .t ab le ( m us ic ia n ( . x ”) r es ea rc h er c ar d t ab le p a r t ic ip a n t s q u o t e s c ar o l: i w as h er e th is m or ni ng al l th is ti m e, i w an te d to go ou t th is tim e. d al la : m os t of th e ti m e th at p eo p le do n’ t u n d er st an d th at w he n yo u ar e en g ag ed in w ith se n io rs es p ec ia ll y se n io rs w ith d em en ti a it ta k es a g re at d ea l of en er g y to en g ag e th em in an ac ti vi ty . b ut to th e o u ts id er it lo ok s li ke yo u ar e do in g no th in g. m ar g ar et : b ec au se il ik e be in g ou ts id e w ith al l th e fl ow er s an d st uf f. . m ar g ar et f u lt o n a d u lt d ay c ar e c en tr e n or th v an co uv er s e s s io n ju ly , s m a l l r o o m in t h e b a c k - m a s s a g e & t h e w a l k -o u t m f - (i n d is se rt at io n p. ) margaret fulton centre — suggested design resolutions coming and going first impression • good sense of arrival • appealing image and setting of the building • good protection from the weather • overall very welcoming sense of arrival and departure • reception area that separates the entry from the main program space • clear designation of the public, semi-public and private areas • staff waits to receive clients and depart from them in a foyer located close to the main entry • clients get help to take off their coats, only as needed • there is designated space to store walkers, wheelchairs or canes a there are toilets near the entrance activity settings general features of activity settings a there is a pleasant view to the outdoors a there is no efficient separation for some spaces for various concurrent activities • extra chairs are lined up along the periphery of the room a toilets are easy to find and located nearby; however, one is not discreetly designed a there is plenty of natural light. glare from outside is controlled by blinds suested design resolutions a find storage for extra chairs not in use • the access to toilets needs to be designed more discreetly a separate the interior wandering path from the art therapy room dining a there is a good dining room that works well kitchen and kitchen work • kitchen area is not accessible to the clients. suggested design resolutions a provide a kitchen facility that would allow safe involvement of clientele indoor walking and wandering in combination with outdoor activity • good outdoor wandering path, garden and ample room for outdoor activity. physical and related support activities a there is an open space suitable for use by up to people for physical and other therapies. overall the centre is designed to accommodate seniors with dementia and architecturally answers most of the needs and behaviour that rise due to the disease. interviewing staff and the architect of the centre it became clear that the collaboration between them produced one of the best facilities in vancouver. drawing mf- , suggests minor changes to eliminate the interference of the interior walking path with the art therapy room and minor changes in the back room by providing access to a new balcony and windows that can be opened wider for fresh air. ’ o” ” figure : proposed wall separating the wandering path from the art room at margaret fulton centre i g gdial oea w*nrgpa!i c c r lahgm’ g azo lp? dsc.p hg courtyard &q) - estngdoqr ?- hewwmle hgpa ’ tor i aogtn ieww*ll i if lounge area newartajeaj ____ . t lowci.o ‘ fl ogvth(g rflvt ww • (main entrance drawing ml? — : proposed changes to floor plan at margaret fulton centre see drawing mf — . adding a new deck to the back room and expanding art area and interior wandering path oinng room c re at iv it y , d em en ti a an d th e t h e ra p e u ti c e n v ir o n m en t d al ia g o tt li eb -t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u ni ve rs it y of b ri ti sh c ol um bi a v an co u v er , b c . l e g e n d ] n ew a dd it io n m in or c h an g es to j e xi st in g a re a n ew d oo r m ar g ar et f u lt o n a d u lt d ay c ar e c en tr e n or th v an co u v er ju ly , p r o p o s e d f l o o r p l a n an p la y g ro u n d so ut h el ev at io n p r o p o s e d h ig h g u a r d r a il m ai n en tr an ce w es t vi ew m f - b (i n d is se rt at io n p . a ) n o te s f ro m v id eo a n al y si s w s (w id e sh o t) s es si o n f o u r m ar g ar et f u lt o n is a re la ti v el y n ew fa ci li ty an d d o e s n o t n ee d m an y ch an g es . a rt s r o o m is o la te th e ar t ro om fr om th e w on de nn g p at h w ay . m ov e ex is ti ng co u n te r to pr ov id e bi gg er sp ac e fo r ar ts ac ti vi ti es . s m al l r o o m in th e b ac k . a dd a d ec k w it h a c c e ss fr om th e sm al l ro om an d th e di ni ng ro om . . s ec u re th e d ec k w it h a hi gh se e th ro ug h fe n ce so th e vi ew an d th e vi ew of th e ch il dr en pl ay in g be lo w in th e pl ay gr ou nd is m ai nt ai ne d. . c h an g e w in do w in sm al l ro om to le t m or e ai r in on ho t da ys . c re at iv it y , d em en ti a an d th e t h er ap eu ti c e n v ir o n m en t d al ia g o tt li eb -t an ak a, m a rc h in te rd is ci pl in ar y p ro gr am u nw er si ty of b ri tis h c ol um bi a v an co uv er , b c . m ar g ar et f u lt o n a d u lt d ay c ar e c en tr e n or th v an co u v er ju ly , p r o p o s e d f l o o r p l a n m f - a (i n d is se rt at io n p. , figure : participant with moderate dementia at margaret fulton centre explains what creative expression means to her. [she wrote under the paper image she glued down: “playing piano.” it was pointed out to me by the centre’s art facilitator.] chapter v: discussion through a!r/tographic inquiry i came to understand particular situations and found ways to create changes to the environment that made use of the five design principles and new dimensions outlined in chapter : that is, the knowledge acquired through practical experience, the literature review of dementia and the behavioural symptoms of this condition, and an understanding of the creative expression abilities of seniors with dementia. suggestions for architectural changes were accompanied by changes to activity programs and the approach to them which emphasized the importance of the artistic process rather than the final product itself. actual physical changes based on this study occurred almost entirely at the l’chaim centre and brought fundamental changes to the centre, while margaret fulton centre served as a site for data collection only. although observations there were important to the overall inquiry, the margaret fulton centre was already designed to meet many of the design principles. the inquiry at margaret fulton centre was conducted as a separate entity, independent of what happened in the rest of the centre. these two different organizational settings altered the milieu in which the data was collected, although the data collection plans were the same for both. reviewing the themes the following are the five themes that emerged from the literature review in chapter two and their relevance to the situations at the l’chaim and margaret fulton centres: . the person—centred approach to care, defined as personhood, is crucial in achieving positive changes in problem behaviour, improving communication and independence. from the beginning through the end of the inquiry, i followed a person-centred approach to interact with the seniors with dementia. there was no intention to interact in any other way. the films documenting the seniors’ behaviour show how this approach helped seniors stay engaged and contributing during the various sessions at the two selected sites. in the literature and in personal experience, the person-centered approach was developed as a reaction to the medical model, where basic needs of seniors were met with little attention to the person inside the condition and every deviation from what was considered normal was described as a disturbing behaviour. as the literature review shows, a person-centered approach can contribute to improved behaviour. . the environment in which seniors with dementia reside can be considered therapeutic only jf it embraces a comprehensive approach to care, based on preserving the person’s dignity, and protecting the person’s rights. both centres followed a model for care that preserved the seniors’ dignity and their rights. both directors and staffs were most concerned with these issues and made sure that this study was conducted ethically and that the rights of the seniors were protected. it was a pleasure to see the seniors make the effort to attend the centres two to three days a week. the environment is a reflection of its function. if designed well, it can be moulded to the needs of the users and by doing so become therapeutic. however, if i ask: could the environmental changes be enough without a comprehensive approach to care? my answer would be no, it would not be enough. the therapeutic environment cannot stand on its own without the contribution of the way it is being used within the total approach to care. even if the environment is less therapeutic than desired, a comprehensive approach to dementia care still remains the key issue in successful interactions with seniors with dementia. the human element will overcome environmental difficulties. a non-responsive environment makes the use of space difficult, but caring leadership may lessen the environmental hardship. however, to arrive at an optimal situation, both the environment and the human element are needed to create a therapeutic environment. . caregivers need to understand the condition from a neuro-psychological perspective, be aware of the social construct developing around the person, be sensitive to changing needs and be flexible in treating the person as the condition progresses. the issue of caregiving is much more complicated than this study is able to reveal. to understand caregiving we need to distinguish between formal and informal care. formal care takes place in care facilities, informal care is provided by families and friends. in home interviews, i did witness a lack of understanding of dementia and a lack of patience as family members became very frustrated over time. understanding the condition would help anyone to cope better with the situation. this condition touches everyone connected with the person with dementia and demands collaboration from a support system if it is to reduce the stresses imposed on everyone. this inquiry oniy strengthened my belief that the more we know, the better we will be able to cope with difficult situations. the more we know, the more flexible we may become in accommodating this unpredictable medical condition. in the last seven years, i experienced this process of learning and i am at a point now where i could say that my approach grew out of this evolving knowledge. . there is a lack of empirical research on appropriate creative expression activities specifically designedfor seniors with dementia. with no appropriate studies available on assessing their creative abilities, there is no clear understanding of what meaningful creative expression activities for these seniors could be. with more studies on such activities, the more effective the therapeutic environment will become. this comment still stands. no specific information on this topic has been found to date that would definitively characterize creative expression abilities of, or the activities for, seniors with dementia within therapeutic environments. . there is a lack of inputfrom people with dementia who are capable ofcontributing their views about how their space can be used. the scientific community has failed to involve their subjects as equal partners wherever possible. this theme comes up again and again in my architectural world. in an effort to improve their environment, seniors are often forgotten. experts from various fields, with the best of intentions, combine their skills to provide a better place for seniors with dementia. however, the main users are often left out. many people in our society believe that older people with dementia are not capable of resolving own their difficulties. the films produced during this inquiry show that seniors with various levels of dementia, from mild cognitive impairment to moderate dementia, have wants, desires and very clear opinions about what they like and dislike. at the l’chaim centre, seniors with various levels of dementia helped contribute ideas to the recent renovations. not all of their recommendations were met; however, it was clear as we all interacted in an effort to design our dream studio, that abstract thinking was evident, and the ability to transfer it into a drawing was there, regardless of how it came out. i would have liked to get more input from the core group at margaret fulton centre; however, some of the seniors moved away or just were not capable of concentrating on the question. the two spanish ladies were difficult to understand and so, i did not pursue the project, knowing that their centre is one of the best in the area. instead, i opted to work on physical changes at l’chaim centre, which needed more help in many ways and provided an opportunity to review the five design principles learned from the literature review. reviewing the design principles the five design principles suggested by cohen and weisman ( ) which were discussed in chapter four were sufficient to cover most of the environmental and behavioural issues that relate to seniors with dementia: design principle . to provide clusters of small activity spaces to promote homelike atmosphere design principle . to provide opportunities for meaningful wandering design principle . to provide positive outdoor spaces design principle . provide other living things design principle . provide a variety of opportunities for movement from public to private spaces these principles have merit because seniors need personal attention, chances to explore without barriers, a connection to the outdoors and living things, and simple transitions that help orient them to the space. as the inquiry progressed it became clear that something was missing from the five design principles in terms of the creative expression experience. my observations of the seniors with dementia led me to consider the various types of participation they exhibited. this led to understanding the need for two more design principles. design principle : provide opportunities for different levels of participation in creative expression activities i have come to understand that there are four different identifiable behaviours: active participation, silent participation, distant participation and passive participation. these forms of participation may have a significant impact on space design for seniors with dementia and should be taken into consideration from the start of each project, or added when renovations are called for where seniors with dementia live. a) active participation is defined as full engagement, including physical and verbal interaction with others, making efforts to communicate in any way possible. b) silent participation happens when seniors are present at the activity, but choose or are not able to express themselves verbally. still, they may show interest through non-verbal indicators such as facial expression. c) distance participation describes a person who may watch the activity from a distance. while this person may or may not contribute to the ongoing activity, their interest is sufficient to keep them close by. d) passive participation occurs when individuals view a video, television or movie. this is still a form of participation and there is always the chance that it may progress later into any of the other types of participation. design principle : provide opportunities to celebrate one’s ethnicity this principle may be incorporated into the design of a facility that might correspond to the architectural style typical to a specific ethnic group, such as a facility built especially for chinese or italian seniors. wherever it is not applicable, it is up to the administration of the care facility to incorporate activities and decorations during significant events, such as the jewish or chinese new years. in addition, based on my experience at the l’chaim centre, it is crucial to have staff who are versed in the specific cultural milieu in order to enrich the world in which the seniors with dementia live. both principles and are singled out here for the purpose of clarity. however, in practice, they apply to each of the five principles presented by cohen and weisman ( ). the four types of participations can be applied to clusters of small activity spaces, opportunities for meaningful wandering, positive outdoor spaces, other living things and spaces from public to private realms. in this context, the design may need to take into account various qualities of space that will accommodate the four types of participation. this may affect the space requirements and call for funding to train staff in spotting the behaviours and in directing willing participants as they move from space to space in an attempt to be closer to the activity. these seven principles form the theoretical basis for architectural considerations when designing for seniors with dementia. furthermore, they have been important to the sites within this study insofar as they have underscored how an architectural flavour of any ethnic culture can be applied to each of the principles. for architects willing to engage in ongoing living inquiry that involves an alr/tographic perspective, it may be that other principles will come to light within other situations. by adopting the five principles of cohen and weisman ( ) and adding two more principles to their list, this study has accounted for the needs of seniors with dementia as they are engaged in creative expression activities. i feel there is a better fit now between the seniors with dementia, their remaining abilities, the spaces they operate within, and the approach we need to take when we interact with them. up to this point there has been an emphasis on theoretical approaches to creativity, dementia and the therapeutic environment. the following is a list of practical considerations architects may find interesting. although architects do engage in a process of inquiry, especially at the beginning of each project, i invite them to continue to be engaged in action research that includes seniors with dementia as much as the situation allows. unfortunately, the architectural profession is often bound by financial and time constraints and the need to produce a built entity, which is by nature a product that stays in place for years. the only time architects are engaged again with their creation is when the building is being assessed for its readiness for occupation. it would be better if architects were given an opportunity to embrace their artistic inquiry in more depth and become more responsive to the needs of seniors with dementia. architects serve as the link between the clients/developers who hire them and the users who may or may not have a say in the design process. the ideal situation would be if developers of care facilities for seniors with dementia would allocate time and funding for a more serious phase of inquiry in the contract and make it a communal responsibility for all the parties involved. reviewing the understandings reached the following understandings arose from the practical activity of working with the seniors closely in various care facilities, in particular in the two selected centres, observing their behaviour, and recording their reactions to environmental manipulations. information from the literature review helped to inform these understandings, as did my reflections of my own role as an a/r/tographer. in addition, reviewing the recordings of the videotapes added one more perspective that threw light on realities sometimes hidden from us while being actively engaged in the study. the following review is divided into the three domains of dementia, creative expression activities and the therapeutic environment. it is hoped that this list will help practitioners who are working in environments such as those studied in this dissertation. - in dementia . ethical consideration must be the top priority when dealing with seniors with dementia. . we cannot expect seniors with dementia to make accommodations to the world around them, as they lose their memory and control over their lives. not only that, as their disease progresses, so does our need to increase the adjustments we make to them. . understanding the various levels of dementia from mild cognitive impairment (mcd to the most advanced dementia as it manifests itself through psychosocial situations is crucial in interacting appropriately with seniors with dementia. . medical intervention is an important element in a comprehensive approach to dementia care. however, without proper identification or diagnosis of the various dementias, seniors may take improper medications, and expectations that the administration, staff, family and friends impose on them may be too high or too low. . biomedical research in dementia strives to unlock the neural mechanism that causes damage to the brain cells that can lead to different types of dementias. prominent scientists in dementia research suggest that cure is still years away. this study suggests additional ways to provide dementia care. . the majority of the medical establishment tends to ignore the practical contribution the arts play in dementia care. although employing the arts in health care in general is gaining acknowledgment in the literature, the practical applications of the arts in dementia care is still in its infancy. - in creative expression activities . appropriate and flexible creative expression activities encourage seniors with dementia to express themselves and stay connected socially. . seniors with dementia need more time to express themselves. short sessions of less than one hour and fifteen minutes do not provide the time needed for these seniors to get familiarized with a topic, mentally digest the information and react to it. . seniors with dementia need time to reflect and time to unwind, between activities. high level activity needs to be followed by low level activity. continuous exposure to demanding mental exercise will defeat the purpose of keeping them engaged. on the other hand, appropriate challenges are desired and welcomed by these seniors. it validates their desire to be recognized as individuals and treated as members of society. . seniors with dementia need program and environmental cues to engage them in creative expression activities. . programs need to be planned in advance and appeal to all the senses. . knowledge of the past life of seniors with dementia is crucial to continuing communication with them. knowing intimately a person’s culture and customs through careful study, kinship or membership of that group is extremely important in accessing early memories some seniors with dementia can still recall. . a creative expression facilitator needs to know at least one or more areas of the performing and visual arts well, needs to understand how dementia manifests itself as a medical condition, and needs to appreciate how to manipulate the environment to meet the seniors’ needs. . concerned family and friends need to be educated about what techniques can be used to continue to communicate with a person with dementia. . policy makers in dementia care, whether in government or in the private sector need to support funding for the arts in dementia care. administrators of care facilities need to understand the importance of the arts in dementia care, not just from the arts aspect, but from the fundamental need of human beings to stay creative as long as they can for their own wellbeing. . working with seniors with dementia is most rewarding and can enrich the lives of everybody involved. even if we don’t understand everything they say, we need to be open to hear in between the lines, and recognize their body language to interpret what is not being said. communication occurs in the silence too, and can be expressed through the arts. . the facilitator must relate personally to seniors with dementia and learn to gain their trust. it is also important to empower and talk to them as equals, to continuously seek their input and not assume the position of someone who knows better. we must remember that they have a wealth of knowledge and we are there to help them express it in any way they can, to their best remaining abilities. - in the therapeutic environment . one large open space can serve a group situation well, if no other activities happen at the same time and interfere. . smaller spaces are needed for private and semi-private activities. one way to make the separation is to use room dividers with sound insulation built in. . semi-private space needs to be provided for meeting a friend and family or staff. . home-like atmosphere is important to the seniors with dementia. it provides a sense of security and comfort when seniors are away from home. . interior finishes are crucial to safe mobility, to prevent falls and contribute to social interaction. . access to weather-protected outdoor areas is important to seniors with dementia who feel trapped and house-bound. outdoor heaters, such as those used in restaurants, may offer one solution to moving outside while staying warm. . there is a fundamental need to stay connected to nature that appeals to seniors with dementia. this does not require specific memory. nature provides familiar situations that give seniors with dementia pleasure, a place to explore, wonder and wander without feeling inadequate or judged. outdoor areas and indoor spaces can be designed specifically to provide familiar surroundings. . special furniture designs would benefit seniors with dementia and the people who interact with them. special desks could be designed that are deep and wide enough to accommodate art supplies and a work area, with all the equipment in easy reach within the ft bubble. interaction should take place at eye level and so should the hanging of artwork. . based on typical tables of ft. by ft., a u-shaped arrangement proved to be the most convenient arrangement in a group situation for seniors with dementia and the facilitator or staff. . the most used areas in each centre proved to be the multimedia or multipurpose area, the outdoors and the washrooms. figure , is a model of interaction between space, equipment and function. based on my observations, i draw links between space and the use of space which immediately pointed at the areas most in use. function accessibility to figure : interactive model for space, equipment and function function most used areas questions for further inquiry and closing comments as long as there is no cure for dementia, its progression will eventually diminish creativity. at the same time, we need to continue to treat persons with the condition with compassion and dignity, and adapt activities to the level of their abilities. based on medical evidence and personal observation, symptoms of dementia are often unpredictable and vary with each individual and the situation. creative expression and dementia eventually become two opposing forces. the potential in human cognition to create and express and to use creative abilities to face the challenges of life confronts the progressive deterioration that results in impairment and eventually in death. these two forces intersect at unpredictable crossing points that may change directions. along the way, they travel parallel to each other for an unspecified time and even result in enhanced creativity. these unpredictable crossing points could be the focus of future study. questions such as these arise: (a) what happens psychologically, physiologically and socially to seniors with dementia when they become engaged in creative expression activity? (b) what happens to seniors with dementia on an individual level and within the social context when they become engaged with creative expression activities? (c) what environments, other than those monitored in this study, are equipped to provide appropriate spaces for creative expression activities for seniors with dementia? when working in existing care facilities such as an adult day care centre, a seniors’ recreation centre, or a home, researchers can alter furniture, interior colors, partitions, and creative expression programs as they observe, describe and interpret what is perceived. this would need to be carefully planned so as not to cause too much aggravation to the participants. researchers need to be prepared to stop the inquiry if participants react negatively, and be prepared to be responsive to the needs of the participants at all times. the tolerance to negative reactions needs to be carefully monitored and adjustments made according to ethical considerations. at no point should the research take priority over the well being of the participants. even though this study focused on seniors with dementia, alr/tographic process could be used with other seniors as well. for future inquiry, it would be interesting to observe a group of seniors with no dementia and record their response to creative expression activities within different spaces. further inquiry will contribute to the pooi of knowledge and (a) expand our understanding of what happens to people as they grow older, (b) investigate why some older adults experience a decline in cognitive functions, while others do not, (c) and address the most challenging question: is it possible “to reverse or modify the negative changes associated with aging?” (hoyer & roodin, , p. ). if we can alter the physical environment to encourage the senior’s participation, creative expression activities can be expected to contribute in the following ways: encourage persons with dementia to have a sense of personal control as long as possible and help health service providers and formal and informal caregivers understand the importance of the arts in the healing process, as a way for communication and for maintaining the seniors’ quality of life. this inquiry brought to our attention that the physical environment has the potential to attract seniors with dementia to stay in the space and become engaged in creative expression activities. but the space alone is not enough to engage the seniors in these activities. success in implementing a creative expression program is linked strongly with an understanding of the seniors’ physical and cognitive abilities and with the commitment of the facilitator to implement a flexible pedagogical approach as they interact with each individual. the overall significance of the thesis to understand the overall significance of the thesis, we must consider five areas: a) the theoretical and methodological development of a/r/tography as a new approach within the domain of qualitative research, b) the practical field of dementia care, c) the field of architecture, d) my personal, professional and academic needs and, e) how this study and its context may resonate with other settings. a) this study brought a new application to further the development of alr/tography as a theory and a methodology. as i was contemplating whether to use alr/tography for this study, i could see the clear connection between the artist as an educator and as a researcher. what i needed to establish was whether or not my being an architect and a facilitator working with seniors with dementia could fit within the philosophical approach of a/r/tography. to help understand it better, i devoted time to self-reflection, asking why i was doing what i was doing, how my multiple roles impacted my relationships with the other stakeholders of the study and could my design endeavors qualify as a process of artistic engagement within the various situations. the self-quest continued in parallel to the relational investigation of the seniors with dementia. a/r/tography facilitated this process while emphasizing the connections between the researcher/artist/educator and the participants of the study. using a/r/tography made the picture more complete. while i could have used other methodologies to understand this topic in depth, none would have allowed me to explore my art, and expose myself in a way that was equally as important as the understanding of the other participants. at the beginning of my inquiry, other researchers asked me whether i was aware that my research might be contaminated by my deep involvement with my subjects -- that the responses i got from the participants were perhaps correlated with my outgoing personality. my reaction to these comments was: let’s see where this leads and discover what in my personality made these seniors respond to me. i hope i do have an impact in the situation. using action research is an active inquiry process where i use what i learn through re-searching, in a timely manner, that will effect the learning and well-being of those with whom i am working. b) this study initiated a chain reaction within the academic and professional worlds. i have been giving workshops and training caregivers in the last several years in various places in north america through the american society on aging. in seeking new perspectives, i developed the conferences on creative expression, communication and dementia, which led to the establishment of the society for the arts in dementia care. the main thrust of all these endeavours, as well as of this study, is that we all need to share our resources in the common interest of helping seniors with dementia use their remaining abilities through multiple forms of creative expression. in addition, i have developed an academic course based on my topic for third and fourth year students in a degree program at the bc institute of technology in their architectural program. i also produced a documentary film on a senior with dementia. the topic gained support from the film board of canada. so, the two worlds of academia and practice keep feeding and supporting each other as understandings develop. c) architects who design care facilities for seniors with dementia will find this study informative and useful. my architectural training may attract their attention and hopefully their interest in implementing some of the ideas outlined here. along with architects, details of this work may interest designers of furniture, interior designers, industrial designers and landscape architects. as a result of this study, i was invited to give a workshop for architects at an annual meeting of the architectural institute of bc about a year ago. the workshop was an eye opener for all the participants; they wanted to hear more about dementia from an architectural point of view. this inquiry helped form an understanding of what furniture layout might be best in a group situation. it also strengthened the importance of each room being connected to the outdoors. the five design principles developed by cohen & weisman proved to be a solid basis for architects who work in this field. the addition of principle brings the design of space within an arts room into prominence in accommodating seniors with dementia as they participate in creative expression activities. there is also the need to understand the four types of participation: active, silent, distant and passive. the four levels of participation can help to determine space requirements, but these levels can also be taken into account for other activities for which seniors engage. this last observation has a potentially significant impact on how we design future environments for persons with dementia as they interact in creative expression activities. another contribution to the architectural field could lie in the understanding that combining various creative expression activities in one session may be the answer to successful interactions with seniors with dementia. this may have architectural implications. instead of moving the seniors from room to room to participate in various activities, we may need to change the environment around them and bring the activities to them. we may need to allow for the various types of participation. this means a high level of flexibility in manipulating combinations of space, equipment and activities. knowing the kind of activities and understanding the seniors’ abilities, emotional and physical needs can help shape the architectural envelope and its design. as stated earlier: the physical envelope that surrounds the seniors, spiritually, emotionally and physically, embodies the reflection ofthe seniors’ world whether at home, in a residential setting or in institutional care. this envelope could serve as a therapeutic environment thatfits with one of my long-term goals: to provide opportunitiesfor creative expression activities with educational components that are supported with appropriate architectural planning and design. d) my personal needs as a professional and as an academic are gradually being met. doing this study forced me to look into myself as an architect/artist, researcher, educator/facilitator and understand the purposes of all these roles. it was a healing process for me as an adult student looking to expand life experiences in a meaningful way. the usual cliché: the more we learn the less we know, applies here as well. there is so much to investigate and explore in dementia care that any quality information will benefit the general pool of knowledge. e) air/tography basically sums up the reason for this dissertation and my work with seniors with dementia in the last five years. i hope that lessons learned from. this study may inspire others to continue the inquiry. my intentions in this study were to produce a document that provides theoretical suggestions for space design that would lead to new understandings. i feel i have a responsibility towards my peers and a commitment to improve environments for seniors with dementia when they are engaged in creative expression activities. this commitment needs to be translated into a language architects can use in a practical way in their designs. above all, i hope architects will be inspired to consider the understandings documented in this dissertation as a way of reconsidering some of their own practices when designing spaces for persons with dementia. although the group of participants was small in number at both sites, the participants displayed behavioral symptoms seen in other situations outside this study. what this study provided was an opportunity to suggest new space and furniture arrangements while the creative expression activities program was conducted. changing the table arrangements allowed a favorable layout of tables in a group situation. this may seem like a small detail in the context of dementia care in general. however, when we take into consideration the hundreds of adult day care centres in north america and thousands of care facilities, where seniors with dementia and staff struggle to maintain any art activities under trying conditions, any change that could alleviate stress or improve the environment for seniors and staff would be most welcome. the understandings that were gained can provide practitioners in dementia care with a description of our experience showing that one arrangement may work better than others and therefore ongoing inquiry is essential. in the program of creative expression activities i developed and conducted at the two centres, the furniture layout and practices i suggested were adopted at one, and some of the ideas outlined in this study were implemented. as this chapter comes to an end, it also opens up exciting new ideas for inquiry in the field of creative expression, dementia and the therapeutic environment. i would like to thank the many seniors i have been interacting with over the years for the courage and the dignity they have shown me. even in their darkest moments we see some glimpses of the self. anyone who has experienced -- even for a short time --the fear, anxiety and confusion these seniors with dementia must endure most of the time, cannot help but know how much they depend on us to maintain some semblance of their former selves. these seniors could be our parents, grandparents, spouses and friends and, until we find a cure, we must use all our resources to develop our best new ideas and help them in any way we can. epilogue i felt the need to give back something of myself that did not involve the roles of a researcher, facilitator and educator to the seniors i had been working with. it was a reflection of the artist in me as i interacted with the seniors and brought my ideas of creative expression into their space and into their lives. this act was to satisfy my need to be remembered in the centre long after i am gone. it culminated in my proposed design for stained glass doors for the main entry at the l’chaim centre. ideally, if permitted, i would have spent time with several of the seniors and developed a design that they truly had a part in creating. but involving them right from the start would have involved a much smaller group in a different location where, hopefully, the director would have allowed us to work separately from the rest of the participants. since this was not permitted, it became an idea for a future project. instead, i developed this design as my contribution, in appreciation for the love and care the seniors and the staff have shown me. as it happened, i was able to show this design to the seniors and give them the chance to express their opinions of it after it was done. proposed design for stained glass doors at l’chaim centre the following entry in my field notes explains how i arrived at the design of the glass doors: this session was specialfor me as an artist and as an architect. ifinally got to the point where i felt good enough about redesigning the floor plan for the centre to suggest some artistic solutionsfor the suggested second set ofdoors. i looked around and could not see too many places for art display. in fact, there is very little room to display art works anywhere, including those made by the seniors themselves. as i was coming through the main front doors, i started to imagine the centre with the changes i recommended. li would resolve the problem ofpeople coming in and out at will. it would create some private spaces and contribute to a sense of belonging and provide a homey feeling. there was no question in my mind that any proposed artworkfor the l ‘chaim centre would need to reflect the jewish culture, the hebrew language, jewish symbols and motjfs, connection to the homeland in israel. all ofthese elements are shared by jews from all over the world. symbols may change and take on the flavour of the region, but the content will stay the same, recognizable andfamiliar. p- i. a, in fw’tki in / c. ‘_ k i have chosen arches that may represent old buildings, synagogues and the walls of old jerusalem. i also incorporated olive leaves and branches as a symbolfor peace that goes back to biblical times. there is a welcome message in hebrew as people enter the centre. i selected colors that have meaning in the jewish culture: blue for the blue skies in israel and the israeliflag, goldfor the gold aura that settles over the skies of jerusalem in the evenings. there is also a famous song, yerushalaeem shel zaahv, meaning jerusalem of gold. it comes from apoem written by naomi shemer, one of the most beloved song writers ofisrael, who passed away recently. this poem was written in during the six days’ war, when east jerusalem was captured by the israelis and was united with west jerusalem to become one city again. this was an historic milestone in the jewish psyche. jewish people who were preventedfrom accessing the western wall, which is the remains ofthe foundation walls ofthe holy temple going back to the times ofkings david and solomon, could once again pray next to it and touch it. the glass panels will be made from hand-blown french glass and chosen for their interest and beauty. the panels will then be sandwiched between two tempered glass panels and inserted into commercial french doors with a bar across eachfor use as an emergency exit. a brass panel on the bottom of each leafwill absorb any rough handling. the doors can be open or closed. forfull security, privacy and control over the activity room, i would suggest having the doors closed. then, the stained glass design will be in full view as people walk in or out of the centre. on september , am planning to bring the proposedfloor plan design and the proposed artworkfor the glass doors to the participantsfor their input and comments. staffwill participate as well. figure : proposed stained glass doors at l’chalm centre on september , met with a few of the original group of seniors at the l’chaim centre. the design for the stained glass doors was received positively, but was overshadowed by a pessimistic realization that they may never be constructed. although the seniors appreciated the design, they were worried about the cost and who would pay for it. i had a difficult time separating the concerns they raised about finances from the opportunity to freely express an opinion about the design. i thought that a couple of issues prevented the seniors from expressing their thoughts: there were new people in the group who had never met me before, and perhaps they did not like the design but were reluctant to say so. a few days later i travelled to israel. as i was visiting places all over the country, i was struck by the images i came across. while i was sitting in vancouver designing doors with a jewish motif, thousands of miles away from the source of my inspiration, i produced a design based on my perception and memories of what was important in jewish traditional artwork. i surprised myself. i must be carrying those images deeply in my mind and heart. i took photographs to remind me of the artwork i produced for l’chaim. here in vancouver i felt out of place producing a clear ethnic design. but in israel my design was not unique; it fit in with many other windows just like it. it brought home for me the meaning of belonging and fitting in. and it felt good. the understandings that came out of this situation opened a new window for me into the lives of many seniors, who get uprooted from their familiar environment and lose touch with the familiar objects that connected them to the past and to the roots of their souls and spirituality. p - figure : images of natural and man-made arches in israel bibliography agar, h. m. 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( ). promoting a good life among people with alzheimer’s disease. journal ofadvance nursing, , - . appendices a. samples of field notes and inteiviews at margaret fulton and l ‘chaim day care centres participant at the margaret fulton adult day care centre july , interview with lucia and margareta her daughter i arrived on time at the apartment building where lucia and her daughter margareta lives with her family. lucia moved in with her daughter after her health deteriorated and she slipped into a depression. since she moved in she is better but still takes anti depressant medicines. as i entered there were old photos of lucia waiting for me on the kitchen table. the earliest photo showed lucia in her os or more. i asked where was lucia and margareta was asking me if lucia was welcomed to the interview. i told her absolutely. lucia came out of her room with a big smile and hugged me. we went over to the dinning table. we were talking about margaret fulton day care centre, about having to leave the original country and move to another one and the health condition of all the three of us. margareta acted as a translator and was careful in her translations. lucia most of the times understood the question, however, at times she did not understand the question even if it was repeated and changed to fit her cognitive abilities. this was the first time i could see for myself that the language was not always to be blamed for her reduce cognitive abilities. i asked lucia if she was happy in margaret fulton. lucia said she was happy. i asked her if there was one thing she would like to change to make her happier and lucia did not understand the question. later on, lucia was asking about cannel and said she really liked carmel’s violin playing. so she remembered carmel. lucia used to join the peruvian association in vancouver and meet other countrymen or other spanish speaking people. to day she would have liked still to meet them but it is not something very important. margareta explained that it was very difficult for her to take her mother to the association since she was working and that it demanded a great effort to keep it up. margareta explained that lucia was always a quiet person but speaks even less now. i stayed there for about an hour and went back home. it was nice to see lucia speak full sentences and be able to make herself understood. she would have benefited a lot from being with others that speak spanish. the only person that speaks spanish at the centre is elena. however, elena is suffering from parkinson’s and her voice is very weak and hard to understand. participants at the l ‘chaim adult day care centre july , lnte,view with avraham goldstein avraham heard from other people at the centre that i was visiting people in their homes and interviewing them. at the last session at l’chaim, he came over to ask me when i was planning to see him. i was leaving his interview to last since he has no dementia and i wanted to interview those with dementia first. however, i decided to go and see him two days later. i brought my sister-in-law, june, with me as we walked in, avraham was teasing me saying that i brought someone along to make sure i was safe. there was some truth to that. i was not afraid for my own safety, i just did not want to be blamed if anything went wrong. the visit with avraham was very interesting. the first thing that surprised me was the cleanliness and the pleasant arrangement of the furniture and the art work all over the apartment. i heard he did needlepoint, but i had no clue about the extent of his work and commitment to this hobby. later on, when we discussed his hobbies, he told me that after his retirement at age from the israeli army, he took up needlepoint and never stopped. now, at age , he has numerous canvases with the most amazing work. my surprise was linked to my pre-conceived idea that men usually don’t do this kind of craft,that older people stay away from such precise work. later, when avraham showed us his photo album as a young man in israel, i was even more perplexed about his hobby. proudly, avraham showed one album with photos of his life in israel. the story of his life there was very interesting. avraham was born in germany and arrived in israel as a young boy. his mother was a german catholic who converted to judaism. his father was a german jew, whose father was a rabbi. they arrived in israel in . in israel, avraham was involved in the defence forces long before the state of israel was born. photographs showing him on a horse with a rifle protecting the jewish population were very impressive and avraham was proud to talk about it. avraham enlisted in the israeli army in and served there until his retirement. as a young man he was very involved in sports. he was into body building, target shooting and training others for international competitions. he was married twice. both women died of cancer. he moved to canada to be with his daughter in . he has great-grandchildren; he can see them at the jewish community centre when he comes to l’chaim centre. avraham’s brother, who served in the israeli navy, went back to germany in the ‘sos with his parents. i asked avraham how they could move back to a country that just murdered million jews. i have to admit i was shocked to hear it. avraham answered that was why he did not move with them. i asked avraham what he thought about my sessions. he answered that my sessions were interesting and broke the centre’s routine. he also said that he liked the challenges and the intensity i brought to the sessions. he felt i was giving him an opportunity to use his brain and his ability to think. he did not say anything about the environment or the furniture arrangement and i did not ask. i plan to see him again and ask him about it. before i left, avraham asked me several times if i was planning to come back. i told him i might. it depends on how much more i need to do for my study. if i have time i will definitely think about it. july , inter/jews with anita and her husband bill at their home this was an interview replacing one i had cancelled a week earlier when i became sick. when i called back, anita insisted that i should stay for dinner and asked me if! ate fish. i tried to talk her out of it, to no avail. she would not take “no for an answer. i volunteered to bring a dessert with me. anita lives with her husband in the oakridge area. all the homes around them were torn down and huge homes were built in their place. anita’s house is one of the last ones to keep its looks from the ‘ s. the outside space is kept strictly as a lawn for minimum maintenance. anita came to the door to greet me. she gave me a big hue and invited me in. she was barefoot and wore a kitchen apron. the table was set and the salmon was cooking in the oven. anita called her husband to come up from the basement. bill, her husband, responded in an angry way that he was busy with the laundry and he would come up when he could. anita invited me to sit down with her in the den while her husband was busy down below. she had a house guest, her grandchild from israel, a -year-old boy. i could see right away that the presence of the boy was annoying both of them. their major complaint was that he hardly talked to them and spent most of his time in front of the computer. later i found out he was on his way to a summer camp on gabriola island and was just waiting for the day when he could leave to get there. anita sits next to me on the sofa and tells me about her daughters and their families. she also tells me about a man she would like very much to be in a romantic relationship with if bill happened to pass away before her. i was surprised at the ease with which she was sharing such intimate information with me. i was even more surprised when she brought up the subject again when bill came up from the basement. i was not sure how to deal with it, since it could have been a behaviour resulting from dementia, or from a very open and liberal relationship between her and her husband. i decided to stay out of it and see where it would take us all. bill was treating it lightly. when we got ready to sit down, bill prepared the salad from a premixed package. as he was making it, anita asked him where the bread was. bill would not tell her. he got upset that she could not remember where the bread would be. when he finally gave her some instructions, she still had a problem locating it. i decided to help find it and finally got it down from the upper cupboard in the kitchen. anita muttered something that had nothing to do with the situation. i think she was trying to reduce the stress and the unpleasant response of her husband. as we sat down, i called their grandson to come and join us. anita said a few things that made the boy clam up, “he does not like me... i don’t know what else to do... he does not have any friends...” she tries to hide her feelings but she has a hard time concealing them. i decided to help anita with the food distribution. it seemed that her somewhat restricted abilities were annoying bill. i dished out the salmon. as for the rest, we passed the dishes around. anita had prepared borscht, a traditional soup made of beets. i asked her if she made it from scratch and she said, yes. later i could see it came from a bottle. as we were eating, bill passed the salmon skin on to anita. i was surprise to see him do this, especially when she is so overweight. during the meal anita would ask some questions and every once in a while, her husband would mock her for not knowing the answer, or not asking the right way. anita was reduced to the role of a little girl trying to please bill. i was angry with the situation. i am sure that in better times, anita would not have allowed bill to talk to her like that. on the other hand, perhaps she did go along with it. i got up to clear the table and started to wash the dishes. bill asked me to stop and i did. anita went to the den and brought back a photograph published in a jewish publication that included the person she might like to be romantically involved. bill added that that person was happily married. anita said, so what. i stayed a little longer after dinner as we reminisced about traditional jewish food. it seemed a good topic for anita and bill since it put them on an equal footing and the conversation became much more pleasant. through my whole visit anita was asking me when i was going to interview her. i told her i was interviewing her the all time, but through a normal conversation flow, and that i was getting the information i needed. she also wanted me to continue to come to l’chaim and said that she would be missing me a lot. i told her i would try, but at this time i was extremely busy. she remembered cannel playing the violin. anita did not talk much about l’chaim centre and i was not insisting on getting her opinion about my program or the furniture layout — i had already gotten her opinion during the filming. anita accompanied me to the door; i said goodbye and left. interviewing anita and toby and their husbands brought home the message about how important it is to work and train family caregivers so they know what to expect and can be prepared mentally and physically to handle a person with dementia. b. air/tography field notes at margaret fulton adult day care centre july , , music session legend floor plans e-mails problems i i ask david using knowledge from architecture ________ a point to check again present: dalia, david, joan skeet (recreational facilitator), june, carmel (violinist). seniors: lucia, margaret, elena, mildred and betty. weather: cloudy, rainy and muggy. transportation: my own vehicle. david came separately in his car. cannel arrived separately with mineo. she is busy with preparations for her concert. researcher state of my own mind: i was wondering how things will go in this session and whether i will be able to engage the participants. will i be able to hear any discussion or comments on the environment. i asked david to make a copy of the dance of the king and i and for some reason i could not find it. i did not mind it since i knew i was going to have cannel playing today. carmel has such a rich repertoire of music from opera to classical music to scottish dances that it was easy to change the music as we went along to fit the moment. her talent is apparent and it is very appreciated by the participants. my physical and emotional state: i was relaxed but extremely hot. we were all sweating although the doors to the garden were open. i thought to myself, things were running smoothly until i realized that perhaps they are not as they seemed to be. explanations will follow, preparation for the session: we decided to conduct this session in the art room. joan skeet, the art coordinator, divided the art room into two. half was allocated for the knitters and half was allocated for us. we took partitions from another part of the centre and situated them in between the two spaces. june hung our banners on the partitions with images of musical instruments. i thought it looked really good, especially when participants looked at them and made some comments. betty said she had a violin at home she had played on for many years, but hers was a different kind. what she saw were electric guitars on the partitions. we also covered the tables with fabric with musical instruments printed on them. i spread pictures of musical instruments everywhere that had been cut out of magazines, brochures, and catalogues from music stores. we brought the electric piano from the small room and situated it along the wall. we were aware that the area was used as a pathway for the seniors for their afternoon walks. cannel was practicing inside the emergency room and brought all our bags inside there with her. she wanted the space to look good for the camera. i asked joan to do the writing for me during the poetry writing. joan and i started to gather the participants that had consented to be part of the study. joan wanted to make sure they went to the washroom first. as i was collecting them, those who sat down got up after few minutes and left. they were sitting undisturbed until carol joined them and encouraged them to leave the room. later i heard from maureen that carol had mental issues before she was diagnosed with dementia and that she has many issues to deal with. for a moment i stood there wondering if i was going to have a session at all. and then i had to remind myself that whatever happens is part of the study. i had to remind myself of several things: • i am a qualitative researcher and that we can learn from any situation • dementia is an unpredictable disease and that i need to be ready for the unexpected • not to take the difficulties of keeping the participants in place as a personal failure i started to talk into the camera to explain what was going on. just as i was ready to give up, joan started to bring back some participants and i stayed around to make sure that some activity is happening to engage them in some interaction. i shortened the introduction to the session and asked cannel to play on the violin. i sat there in my chair letting the music relax me and collect my thoughts for the next step. as i was sitting there it suddenly dawned on me that cannel, my daughter, would be leaving in about a week for israel to study there for about one year at the university of tel aviv. cannel was playing meditation, which moves me each time to tears. this time my emotions were overwhelmed with sadness knowing that she would be gone soon. mildred, one of the participants, commented on my tears and her understanding of the situation. educator/learner facilitator i came to the session completely ready. i had my session planned, david was ready to start shooting, joan skeet was ready to help, june was hanging and decorating the area, cannel was setting up her space and practicing her music. it was a big production. my mind was totally focused on the activity that was soon to start, and then i had the realization that we may not have anyone to work with. from my experience working with seniors with dementia, i knew it could happen. yet, i needed to address my owti feelings of disappointment and failure. i soon turned to my crew to alert them that the session may not go ahead. i felt i had a responsibility to the people i work with and that they needed to understand the situation. i felt responsible to joan skeet who worked hard to get the participants to sit around the table. my mind was working hard analyzing what could be the factors in keeping the participants around the table. • there was a question of trust. i was new to the seniors. there was no trust yet established between me and the seniors. betty saw me twice. margaret saw me three times. mildred was seeing me for the first time. lucia saw me twice, helena knew me from the earlier time when her granddaughter was studying piano from the same teacher as my oldest daughter. • there was the issue of introducing something new to the programs at the centre. this session did not follow the usual routine that was followed very carefully at the centre. • the area of the activity was used by seniors and staff for walking after lunch and access to the wasbrooms. • noise level. need • we could hear everybody else in the centre, including a woman volunteer who played the piano after lunch. architect/artist setting up the room: in the process of writing this observation, i have already described many details about the space. however, a few details are still missing. the area that was allocated to the session today faced the garden. although it was raining, the garden looked just lovely. the gazebo in the centre has flowering pots hanging from each corner. the flowers were pink and white and it was the height of the blooming season. the flowers were just cascading down and were ajoy to the eye. plants on the ground along the wandering path were blooming as well. the garden is situated at one corner of a grassy playfield with big trees. looking out from the art area, it felt like we were in the forest. the quality of the light that came pouring in even on this cloudy day was beautiful. so the setting was very inspiring. maureen the director suggested that perhaps we should try the outside. as i was admiring the flowers outside in the garden with my wandering glances while carmel was playing beautiful music in the background, i found myself framing imaginary still pictures in my mind. i was actually looking around as if i had a camera in front of my eye. this is not the first time i became aware of it, but i have never really written it down in so many words. i usually approach photography from the point of view of an architect. i look for an interesting object, the composition as a mass in space, how the light falls on it, the color of the object and how it relates to the surrounding colors in the environment and whether or not i want to convey a message or just stay with the aesthetic value of the shot. joan and her new house in the middle of our correspondence, joan skeet commented that she had bought a new house and she was very busy decorating it. she also reported that she was leaving margaret fulton after years of working there. as i was arranging the tables for the session, joan took paint chips and laminate samples to be used in her new house out of her bag. i was drawn right away to the prospect that she was asking my opinion and i really liked her choices. i came up with some suggestions for finishing materials. it felt strange to look at colors alone without referring to the meaning they conveyed that could only be acquired with more information about joan, her family, her house and so on. weeks later i visited her house and helped with some suggestions although joan has a great sense of color being an artist herself. it was more like helping a colleague of the same field of design. august , , repeated session on bending wires. strength versus weakness legend floor plans and furniture arrangement f problems __________ ask david using knowledge from architecture a point to check again participants divided into groups. one group with dementia, the other without present: debbie, dalia, david, june, pauline (nurse) part time recreation employees, seniors: jack, ruth, eera, sonia, avram, michel, june, edna (new person), sara, morris, mm (new person), anita. weather: raining hard transportation: my own vehicle. david came with me. researcher state of my own mind: i was worried about the results of the ct scan i have gone through yesterday. at the time of writing i learned that the tumor is not growing back. i wonder how long this remission is going to last. preparation for the session: this is a repeated session on bending telephone wires, with discussions on creativity and strength versus weakness. i brought along telephone wires as i did the last time. i called debbie and told her that i needed to have a session with the participants who were diagnosed with dementia and whose mmse indicates that there is some memory impairment. debbie agreed and we set the session for august , , seven weeks after the first session on bending wires took place. why did i decide to repeat the session? as i reviewed the video and the transcript of the first session on bending wires, i realized that participants with dementia did not participate as much as the more able participants. i was very surprised to learn that the analysis of the text did not correspond to my own perception of what transpired during the session. i came out from facilitating the first session feeling that there was far more input from participants with dementia. i was watching their verbal and non-verbal responses to my questions and to the discussions. they all stayed around to listen. i did not feel any lessening of their engagement in what was going on. however, i decided to go back for another session; this time i would divide the participants into two groups. participants who were diagnosed by their physicians, or scored low on their mmse were led to one side of the table and the rest to the other side of the table. i left an opening of feet between the tables that separated the two groups. educator/learner facilitator i had some concerns about to how to approach this experiment without making it obvious that i was selecting participants according to their abilities. if i had permission from the l’chaim director to work with those with dementia only, and use a separate room, i would not worry about hurting anybody’s feeling. instead, i opted for a u-shaped furniture arrangement with a -foot gap between the two groups. my introduction was oriented towards the two groups at the same time. however, i paid more careful attention to the group with dementia and gave them priority over the group without dementia. i included anita in the group of participants with dementia since her condition was not that clear to me. i need to discuss it with dr. feldman. anita scored high on the mmse, but has no control over her reactions and antagonizes people around her. she does not always understand abstract concepts. as the discussion about what is creativity went on, the boundaries that were meant to divide the two groups started to unravel as both groups responded. there were some profound thoughts on what creativity meant to the participants on both sides. in both groups there were participants who did not elaborate on their answers, while at the same time michel, june and edna, seniors with dementia, gave some responses that put into question the thought that there may be a need to separate participants according to their cognitive abilities. the only difference i observed at this session was that participants with dementia needed more time to digest information and more time to respond. this extra time would be welcomed by some people with no dementia as well. i was surprised when june, who has dementia, criticized anita for describing a certain situation as a creative act. i was of the same opinion as june but tried to be more diplomatic about it and give anita more time to get the point of what creativity means. edna, a newcomer to the group, really did not want to be there. all she wanted to do was go home. bending over her knitting, smiling in the wrong places, feeling uncomfortable, she said simply: creativity is doing something nobody else is doing. i was not expecting it from her. i asked her to repeat the answer since i could not believe my ears. i am waiting to see her mmse from debbie. i was told edna was diagnosed with dementia by her physician. there is something very fundamental about us. we follow what we see and expect others to behave according to the perception we have formed in our minds about them. no matter how long i have been working with people with dementia and i have worked hard at sharpening my sensitivity towards their needs, i am still surprised every once in a while at what i witness as a demonstration of cognitive abilities. it reinforces the ideas that this is an unpredictable disease and therefore we should expect the unexpected. architect/artist we have set up the room times before. i already knew that the u- shape worked best for me and the participants. what i did find very helpful was the gap of feet between the two groups. although i adopted it more for a visual separation, so people would know where their seats were and for my own orientation and ease of filming, it turned out it gave the participants an opportunity to shorten their route to the washroom without having to go around to the end of the u-shape. this should be taken into consideration when planning furniture layout for an activity. this session was special for me as an artist and as an architect. i finally got to the point where i felt good enough about redesigning the floor plan for the centre to suggest some artistic solutions for the suggested second set of doors. i looked around and could not see too many places for arts display. in fact, there is very little room to display art works anywhere, including those made by the seniors themselves. as i was coming through the main front doors, i started to imagine the centre with the changes i recommended. it would resolve the problem of people coming in and out at will. it would create some private spaces and contribute to a sense of belonging and provide a homey feeling. proposed design for the stained glass doors there was no question in my mind that any proposed artwork for the l’chaim centre would need to reflect the jewish culture, the hebrew language, jewish symbols and motives, connection to the homeland in israel. all of these elements are shared by jews from all over the world. symbols may change and take on the flavour of the region, but the content will stay the same, recognizable and familiar. i have chosen arches that may represent old buildings, synagogues and the walls of old jerusalem. i also incorporated olive leaves and branches as a symbol for peace that goes back to biblical times. there is a welcome message in hebrew as people enter the centre. i selected colors that have meaning in the jewish culture: blue for the blue skies in israel and the israeli flag, gold for the gold aura that settles over the skies of jerusalem in the evenings. there is also a famous song, yerushalaeem shel zaahv, meaning jerusalem of gold. it comes from a poem written by naomi shemer, one of the most beloved song writers of israel, who passed away recently. this poem was written in during the six days’ war, when east jerusalem was captured by the israelis and was united with west jerusalem to become one city again. this was an historic milestone in the jewish psyche. jewish people who were prevented from accessing the western wall, which is the remains of the foundation walls of the holy temple going back to the times of king david and solomon, could once again pray next to it and touch it. the glass panels will be made from hand-blown french glass and chosen for their interest and beauty. the panels will then be sandwiched between two tempered glass panels and inserted into commercial french doors with a bar across each leaf for use as an emergency exit. a brass panel on the bottom of each leaf will absorb any rough handling. the doors can be open or closed. for full security, privacy and control over the activity room, i would suggest having the doors closed. then, the artwork will be in full view as people walk in or out of the centre. on september , i am planning to bring the proposed floor plan design and the proposed artwork for the glass doors to the participants for their input and comments. staff will participate as well. c. session planning music session purpose: to explore the link between creative expression, dementia and the therapeutic environment. duration: about minutes. twice in each centre. second time around with changes to the environment. supplies (we need to discuss what everyone has and can bring) • put music instruments on display • hang images of music instruments around • bring books and posters of music instruments • coloured construction paper / ” x ” • coloured wrapping papers with instruments images on them • stickers of music instruments • felt pens • glue sticks • scissors at least for every two people • white envelops to send cards how . minutes of socializing. drinking coffee, tea, juice, cake and chocolate. this is a time to socialize. no planned activity takes place. . cleaning the tables in preparation for the planned activity. • - minutes of topic presentation. dalia will introduce the topic. that will include: • carmel playing popular music from operas • dancing to a waltz with a senior who wants to dance. dalia, and staff inviting to dance. • asking who would like to hold a violin or a guitar and try to play it with the help of sonia and carmel developing a discussion on the topic a do you like dancing? • if yes, ask what kind of dances? what about the waltz? • where did you go to dance in your youth? making a card . drawing a music instruments or anything while carmel is playing the music . distribute the wrapping papers already cut to smaller pieces • distribute scissors and glue sticks • staff and dalia to help write what ever the seniors want to write inside • put inside envelopes to be mailed to the families evaluation sheets or comments from participants and staff: . how did you feel about the session today? • is there anything in this room that disturbed you during this session? what was it? schedules for sonia (on guitar) and carmel (on violin) sofia landry’s schedule at the margaret fulton adult day care centre tuesday, june , between — : pm. friendship session (includes music). cancelled. tuesday, june , between — : pm. friendship session (includes music) at l’chaim adult day care centre monday, july , between : — : noon. friendship session (includes music) monday, july , between : — : noon. friendship session (includes music) carmel’s schedule monday, june , between monday, june , between tuesday, july , between monday, july , between : — : noon at l’chaim centre. music session : — : noon at l’chaim centre. music session : — : pm at margaret fulton. music session : - : pm at margaret fulton. music session friendship purpose: to explore the link between creative expression, dementia and the therapeutic environment. duration: about minutes. twice in each centre. second time around with changes to the environment. supplies • a flip chart ”x ”. or white board. the bigger the better. (centre’s) • felt pens, at least two colours, black and red, with extra wide tips. (dalia) • tape, pins and laundiy pegs to display the sheets around the room in viewing range and at the eye level of a sitting person. (dalia) • bring flowers that represent friendship and love that seniors can take back to their homes. (dalia) • bring chocolates in the shape of a heart or home baked cake.(dalia brings chocolates, centre brings cake) • video tape of the movie casablanca. (dalia brings tape) equipment: tv screen and a vcr. (centre’s) how • minutes of socializing. drinking coffee, tea, juice, cake and chocolate. this is a time to socialize. no planned activity takes place. • cleaning the tables in preparation for the planned activity. • - minutes of topic presentation. dalia will introduce the topic. that will include: • sharing dalia’s experiences and staff experiences in friendships • talking about the tough times in friendship and the good times • have sonia play - songs on friendship (see schedule at the end) • have carmel play a love song on the violin (see schedule at the end) • ask the participants what did the music do for them • introduce the movie casablanca and the last minutes • show the last minutes of casablanca • discuss the scenes from the movie writing a group poem a key words — ask the seniors for key words that describe friendship and write them down on a flip chart. • as the sheets of paper fill up, display them side by side on vertical surfaces at the seniors’ eye level. • with a new sheet of paper on the easel, further develop the poem into sentences. • read the words aloud as sentences are called out. all suggestions are considered and all participants are invited to contribute to the poem. make an effort to incorporate even awkward key words. • the group needs to agree and approve the final product • the finished poem is then distributed to the seniors the following week. • evaluation sheets or comments from participants and staff: • how did you feel about the session today? • is there anything in this room that disturbed you during this session? what was it? optional questions: • what does creative expression mean to you? • in what ways can you express yourself creatively? • how important is creative expression to you? • when you look around this room, is there anything you would like to see changed to make it easier for you to engage in creative expression activities? schedules for sonia (on guitar) and carmel (on violin) sonia landry’s schedule at the margaret fulton adult day care centre forbes avenue north vancouver, bc v m y phone: - - director of the centre: maureen murphy tuesday, june , between — : pm. meeting with families at : pm. tuesday, june , between — : pm at l’chaim adult day care centre west st avenue vancouver, bc v z n phone: - - director: rabbi dina-hasida mercer monday, july , between : — : noon monday, july , between : — : noon carmel’s schedule monday, june , between : — : noon at l’chaim centre monday, june ,between : — : noon at l’chaim centre tuesday, july , between : — : pm at margaret fulton monday, july , between : - : pm at margaret fulton d. consent and assent forms ui c the university of british columbia curriculum studies faculty of education institute of health promotion research, main mall interdisciplinary studies vancouver, bc canada v t z tel: ( ) - fax: ( ) - rita.irwin@ubc.ca consent form creative expression, dementia and the therapeutic arts room principal investigator: dr. rita l irwin, professor, ubc, department of curriculum studies. faculty of education. telephone number: ( ) - . co-investigator(s): dalia gottlieb-tanaka, doctorate student, ubc, faculty of graduate studies, institute of health promotion research and interdisciplinary studies. telephone: ( ) - at the office or ( ) - at home. this research is part of a thesis (public document) for ms. gottlieb-tanaka’s graduate degree. the people who will have access to the study are: dr. rita l irwin and dalia gottlieb-tanaka, doctoral student, purpose: to explore the link between creative expression, dementia and the therapeutic environment. although some researchers would dispute the level and quality of creativity in each person, the ability to express oneself continues through the stages of early to moderate dementia. areas destroyed in the brain show reduced cognitive ability but other areas may continue to perform intact for a longer time. through appropriate programs conducted in responsive environments designed to accommodate their needs, these seniors may continue to enjoy life to the best of their remaining abilities. study procedures: you will participate once a week for eight weeks either in a group of seniors at the margaret fulton adult day care centre or in a group of seniors at the l’chaim adult day care centre. each session is planned to last for minutes. it begins with socializing, serving coffee, tea and baked goods, open discussion and the introduction of relevant materials. next, a topic such as friendship is introduced, and the group composes a poem based on the topic. the sessions will be videotaped at both centres. at the l’chaim centre all seniors will be included in the session. however, only seniors will be filmed. at the margaret fulton centre, seniors will be selected to participate in the study. you will not be filmed nor included in the study if you do not wish to participate. confidentiality: the subjects’ identity will be kept strictly confidential. all documents will be identified only by a pseudonym and kept in a locked filing cabinet. subjects will not be identified by name in any reports of the completed study. version: may , page / some data records will be kept on a computer hard disk and will be accessed with a security code known only to dalia gottlieb-tanaka. however, the subjects and their legal guardians may want to be identified for their contribution; for example, for the artwork they produced. in such case, the subjects and their legal guardians may sign at the end of this consent letter to indicate their wish to be identified and credited for their contribution to this study. subjects and their legal guardians who agree to be identified may withdraw their consent at any time during the study with no consequences to their treatment or activities at their care centre. contact for information about the study: if you have any questions or desire further information with respect to this study, you may contact dr. rita l irwin, principal investigator at ( ) - or dalia gottlieb-tanaka, doctoral student, at ( ) - at the office or ( ) - at home. contact for concerns about the rights of research subjects: if you have any concerns about participants’ treatment or rights as a research subject, you may contact the research subject information line in the ubc office of research services at - - . consent: participation in this study is entirely voluntary and the participants may refuse to participate or withdraw from the study at any time without jeopardizing their access to further services from the adult day care centre they attend. your signature below indicates that you have received a copy of this consent form for your own records. your signature indicates that you consent to participating in this study. subject signature date (or parent or guardian signature) printed name of the subject or parent or guardian signing above. your signature indicates that you wish to be identified in any narrative description of the study. your signature also indicates that you wish to be credited for the artwork you create during the study. you may withdraw your consent at any time. subject signature date (or parent or guardian signature) printed name of the subject or parent or guardian signing above. version: may , page / (j c the university of british columbia • [ubc department letterhead] institute of health promotion research, interdisciplinary studies assent form creative expression, dementia and the therapeutic arts room principal investigator: dr. rita l irwin, professor, ubc, department of curriculum studies. faculty of education. telephone number: ( ) - . co-investigator(s): dalia gottlieb-tanaka, doctorate student, ubc, faculty of graduate studies, institute of health promotion research and interdisciplinary studies. telephone: ( ) - at the office or ( ) - at home. this research is part of a thesis (public document) for ms. gottlieb-tanaka’s graduate degree. the people who will have access to the study are: dr. rita l irwin and dalia gottlieb-tanaka, doctoral student. purpose: to explore the link between creative expression, dementia and the therapeutic arts room. the goal of this study is to document the experiences of seniors with dementia while they are engaged in creative expression activities in particular therapeutic settings at these adult day care centres. study procedures: you will participate once a week for eight weeks either in a group of seniors at the margaret fulton adult day care centre or in a group of seniors at the l’chaim adult day care centre. each session is planned to last for minutes. it begins with minutes of socializing, serving coffee, tea and baked goods while discussion on any subject is encouraged. next is a prepared activity lasting about minutes. it includes a display of relevant materials. discussion is encouraged to draw on your own experiences. following the discussion an activity of about - minutes is introduced: it might involve talking about friendship, making paper appliqué, listening to music and dancing. free discussion usually continues and takes on the flavour of the moment. the two topics were selected. the first topic on friendship includes a discussion on various types of friendship that will draw on your past and present experiences. the last five minutes of the movie “casablanca” is played, demonstrating how a new level of friendship is struck up between the french policeman and the nightclub owner. an activity of poem writing follows the discussion and the movie clip. the movie “casablanca” may be replaced by the “king and i” depending on the circumstances. a second topic consists of listening to music, dancing to music, playing to music, painting to music and reminiscing about the time when the music was composed. no restrictions are imposed on the way you express yourself creatively. version: may , page the sessions will be videotaped at both centres. at the l’chaim centre all seniors will be included in the session. however, only seniors will be filmed. the rest of the seniors will not be filmed and their activity will not be affected. you will not be filmed nor included in the study if you do not wish to participate. confidentiality: your identity will be kept strictly confidential. all documents will be identified only by a pseudonym and kept in a locked filing cabinet. you will not be identified by name in any reports of the completed study. records will be kept on a computer hard disk and will be accessed with a security code known only to dalia gottlieb-tanaka. however, if you wish to be identified for your contribution to the study; for example, for the stories and artwork you produced, you may sign at the end of this consent letter to indicate your wish to be identified and credited for your contribution to this study. you may withdraw your consent at any time during the study with no consequences to your treatment or activities at your care centre. risks and benefits: there is a very small risk of reliving a troublesome past that might contribute to confusion. extra care will be taken to avoid materials that may induce those memories, such as in the case of holocaust survivors. the director of the l’chaim centre will be consulted well in advance of each step of the study to prevent such possibilities and so will the director of margaret fulton centre. in my six years of working with seniors with dementia, i most commonly found that these seniors wanted to discuss a variety of topics including sensitive ones. care will be taken in the selection of potential subjects to make sure that any risk is minimized. the directors will be advised to prepare counseling services in case such a situation arises. the subjects who participate in the program will enjoy fun, informative and stimulating activities that will enrich the sessions and validate their experiences, it is an opportunity for participants to socialize with each other, staff and the researcher. it is an opportunity to be heard and to be valued. contact for information about the study: it you have any questions or desire further information with respect to this study, you may contact dr. rita l irwin, principal investigator at ( ) - or dalia gottlieb-tanaka, doctoral student, at ( ) - at the office or ( ) - at home. contact for concerns about the rights of research subjects: if you have any concerns about your treatment or rights as a research subject, you may contact the research subject information line in the usc office of research services at - - . consent: your participation in this study is entirely voluntary. you may refuse to participate or withdraw from the study at any time without jeopardy to your access to further services from the adult day care centre you attend. version: may , page / your signature below indicates that you have received a copy of this consent form for your own records. your signature indicates that you consent to participate in this study. your signature date please print your name your signature indicates that you wish to be identified, including artwork produced, for your contribution to this study. you may withdraw your consent at any time. your signature date please print your name version: may , page / e. sample of inte,view questions april , research topic: creative expression, dementia and the therapeutic arts room sample of interview questions addressed to the participants: . what does creative expression mean to you? . in what ways can you express yourself creatively? . how important is creative expression to you? . when you look around this room, is there anything you would like to see changed to make it easier for you to engage in creative expression activities? . is there anything in this room that disturbed you during this session? what was it? . how did you feel about the session today? keyword index keyword index accidents in sleep disordered patients p acetylcholine in sleep regulation of drosophila acetylcholinesterase imaging of brainstem nuclei in sleep disturbance p actigraphy actigraphy/heart rate variability monitor p insomnia diagnosis p overestimation of plm p sleep estimates, improved p activity-rest rhythm and c-fos expression after tryptophan intake p effects of adenosine agonists p serotonergic modulation of p additive model of subjective judgements of sleepiness p adenosine system a receptor antagonist and sleep recovery p a receptor occupancy and sleep deprivation age-related changes in sleep-wake regulation p effects of agonists on activity-rest and serotonin synthesis p sleep-deprivation induced changes in psychomotor performance p sleep eeg variability valerian as adenosine receptor agonist p zebrafish model adenotonsillectomy and childhood sdb p cognitive performance/behaviour p adhd see attention-deficit/hyperactivity disorder (adhd) adolescents aggression/anger/impulsivity in p circadian preferences p with headache, sleep disorders in p longitudinal changes in sleep habits p questionnaire on circadian preferences p school performance and sleep quality p schoolshifts andnapping/sleepextension sleep and wakefulness p with sleep disorders, anxiety/behavioural disturbances in p sleep eeg for diagnosing seizure p sleep habits p , p , p , p sleep in marijuana users during abstinence p sleep patterns and shift schooling p in swiss students p in usa sleep schedules/debt p sleep/sleepiness in french see also children affective preference, influence of sleep on age/ageing adenosine system in sleep regulation p cardiovascular consequences of arousal p changes to activity-rest rhythm p changes to sleep regulation after multiple naps p circadian rhythm of urine output p eeg changes during sleep deprivation and eeg power spectra p effects of noise and shiftwork on fatigue p polysomnographic findings in ’good’ sleepers p postnatal, and initial ventilatory response to hypoxia p reduction in daytime sleep propensity p and shiftwork experience in nurses p training for successful aging p and vigilance testing affected by skin warming p and women in psychomotor vigilance task p aggression and sleep problems p alarm clock triggered by sleep phase p alcohol-ascribed driving accidents and sleepiness p alertness deterioration during extended work schedule p alpha-fluoromethylhistidine inhibiting orexin-induced wakefulness p alttitude and sleep quality p , p alzheimer’s disease acetylcholinesterase imaging of brainstem nuclei p circadian rhythms of rest-activity cycles p sleep-memory relationship p ambulatory sleep-wake evaluation in blind subjects p amygdala function altered by sleep restriction p metabolic changes in narcolepsy p anger and sleep problems p anxiety early morning awakenings p time series/fractal analyses of sleep spindles p in young people with sleep disorders p see also generalized anxiety disorder aortic stiffness in osas p apap therapy, compliance p apnea duration index (adi) p apnea-hypopnea affecting cardiac modulation/delta eeg link p agreement of visual/automatic detection- based indexes p duration index (ahdi) p apparent life threatening event (alte) in infant p apparent sleep deficit arousal disorders and epilepsy , arousal, emotional, and sleep quality p arousal events and nrem sleep dynamics arousal from sleep and adult somnambulism p autonomic correlates bladder voiding in infants cardiovascular consequences , p painful stimuli paroxysmal vs confusional thresholds in older people p arousal threshold in zebrafish p arterial hypertension auto-cpap in p phasic increases during rem sleep p arterial tone, peripheral, during sleep asperger’s syndrome p associative motor plasticity in rls p assymetric sleep in rats p asthma and osa p atherosclerosis risk factors in sleep apnea p athletes’ sleep patterns p atorvastatin p atrial fibrillation, cap in p attachment and rem sleep high frequency eeg activity p percentage/dream reacall p attention and nrem sleep eeg in schizophrenia p sleep deprivation in women p and sleep organization p sustained vigilant, impaired in narcolepsy/ cataplexy p �virtual’ assessment p attention-deficit/hyperactivity disorder (adhd) effects of melatonin leg movement periodicity p and nrem sleep p periodic limb movement during sleep p and sleep instability spectral analysis of rem sleep p attention, selective, and sleep loss/extension � european sleep research society, jsr (suppl. ), – attentional bias in primary insomnia attentional processes modulated by total sleep deprivation auditory startle mechanism disinhibition in restless legs syndrome augmentation in restless legs syndrome treatment – dopaminergic p guidelines severity assessment augmentation severity rating scale, validation of autimatic detection-based apnea indexes p autism, high-functioning sleep organization p wake-rem sleep eeg coherence p autistic spectrum disorder children, sleeplessness in p auto-cpap improved compliance with p in osa and arterial hypertension p titration procedures p automated lights out/rise time recording p automatic analysis system of memory sources of dreams p automatic scoring of periodic limb movement p automatic sleep classification p , p autonomic correlates of arousal autonomic function and insomnia p autonomic signals of sleepiness, analysis of autonomic tone during sleep – autoset-cs treatment p awakening quality awakening stage, effects of p and sleep phase before awakening p axbo alarm clock p ayahuasca, daytime administration of p baclofen p basal forebrain cholinergic cells activity across sleep-waking cycle in recovery sleep induction sleep deprivation-induced activity cholinergic neurons and sleep control p gaba-ergic cells neuron inhibition during sleep deprivation p in wakefulness/rem sleep bath temperatures and sleep eeg spectra bedpartners and sleep-wake cycles p see also couples behaviour and adenotonsillectomy p behaviour changes in rats exposed to social defeats p behaviour therapy brief p see also cognitive–behavioural therapy (cbt) behavioural disturbances in young people with sleep disorders p behavioural effects induced by caress device p behavioural intervention for sleeplessness p behavioural states and communication in newborns p bilateral paramedian thalamic/upper brain stem stroke p biochemical change detection during sleep p biological rhythms p – bipap therapy of sleep-related respiratory disorders p bipolar disorder disrupted circadian sleep variations in p sleep variables as predictors p bladder voiding and arousal in infants blind subjects, ambulatory sleep-wake evaluation in p blink modifications, quantitative analysis of, in sleepiness p blood pressure measurement, overnight p periodic leg movements in sleeping infants p surges, transient, in rem sleep p see also hypertension blue light exposure, non-image forming responses with body mass index (bmi) effects on metabolic measures p and respiratory disturbance p body movements during sleep in very old subjects p body temperature coresee core body temperature surface see skin temperature brain activity due to memory retrieval p arousal, spontaneous yawning and p development in neonates p processes supplying energy for rem sleep occurrence p temperature and eeg brain-gut peptides in sleep regulation p brain injury, traumatic p brain/peripheral duality in sleeping sickness p brain region activity during nrem sleep brain small vessel disease risk factors p brainstem nuclei, acetylcholine-esterase imaging p breath on-line analysis during sleep p breathing disorders, sleep related (sbd) see sleep disordered breathing (sdb) breathing pattern changes after stroke p brief behaviour therapy for sleep-health improvement p bruxism and degree of osas p burnout and insomnia in primary care physicians p burnout patients, sleep continuity in c-fos expression p cabergoline p caenorhabditis elegans sleep model caffeine coffee improving night-time driving p dopaminergic role in arousing effects p and driving performance perception p placebo effect p cancer patients, insomnia in p cap see cyclic alternating pattern (cap) capsaicin and human sleep p carbamazepine p carbon dioxide tension, transcutaneous, and sdb p cardiac autonomic activity and sleep delta power p cardiac control during sleep in hypertension mathematic modeling cardiac function in osas p cardiac surgical outcomes cardiorespiratory coupling reducing sympathetic excitation in osa p cardiovascular activity arousal from sleep circadian vs sleep influences cardiovascular changes, sleep-dependent, in rat hypertension model p cardiovascular consequences of arousal p cardiovascular morbidity and icam- in osa p cardiovascular risk factors aortic stiffness in osas p sleep apnea p and smoking p sleep loss cardiovascular status and osas in neurological patients p caress device for sleep deprivation studies p caring, effect of, on women’s sleep p carotid atherosclerosis carotid occlusion and paradoxical sleep p cataplexy effect of intravenous immunoglobulins on p patient cataplexy-training p three phases of cataplectic attack p see also narcolepsy-cataplexy cbt see cognitive–behavioural therapy (cbt) cerebral asymmetry in memory consolidation � european sleep research society, jsr (suppl. ), – keyword index cerebral blood flow childhood sdb before/after adenotonsillectomy p regional, and radio-frequency em fields cheyne–stokes respiration and cap in atrial fibrillation p causing idiopathic central sleep apnea p and children with congestive heart failure p chiari malformations and sleep p childhood onset myotonic dystrophy type i p children cognitive performance/behaviour and adenotonsillectomy p with congestive heart failure p developmental milestones and sleep trajectories p dyssomnias/parasomnias p effects of melatonin on adhd/insomnia epileptic, and sleep behaviour disorders p family conflict as predictor of insomnia p with headache, sleep disorders in p with neurological symptoms, sleep disorders in p occult sleep disturbances and learning failure p preadolescent, sleep habits/circadian preferences p rem sleep behaviour disorder and narcolepsy sleep disordered breathing before/after adenotonsillectomy p blood pressure measurement, overnight p with sleep disorders, anxiety/behavioural disturbances in p sleep eeg for diagnosing seizure p sleep quality evaluation p in pediatric intensive care p see also adolescents; infants china, daytime sleep in cholecystokinin (cck)-a receptor and sleep homeostasis p cholinergic neurons in basal forebrain activity across sleep-waking cycle in recovery sleep induction sleep deprivation-induced activity and homeostatic sleep control p interleukin- inhibiting p chronic heart failure, depressive symptoms in p chronic intrinsic insomnia p chronic partial sleep deprivation and serotonin signaling chronic sleep onset insomnia and melatonin chronic sleep reduction and school performance p chronotypes and daytime concentration p circadian fluctuations of eeg spectral power in sleep deprivation p circadian pacemakers in delayed sleep phase disorder entrainment with moderate intensity room light circadian preference adolescents p questionnaire, new p preadolescents p circadian rhythm sleep disorders (crsd), hospital treatment of p circadian rhythms adaptation in shiftworkers p in alzheimer’s patients on neuroleptics p attenuated chronotypes and daytime concentration p disrupted, in bipolar disorder p epileptic seizures p light exposure patterns in older people p melatonin and cellular per oscillations after minimal invasive surgery p in sleep inertia on awakening urine output, age-related differences p circadian sleep regulation, individual differences in shiftworkers circadian vs sleep influences on cardiovascular activity citalopram p clinical characteristics of mild vs moderate osa p clock gene polymorphisms in delayed sleep phase disorder predicting sleep structure and eeg power spectra clonazepam p coffee improving night-time driving p see also caffeine cognition improvement with melatonin/light therapy p and progesterone in postmenopausal women p in sleep as nightmare therapy cognitive–behavioural therapy (cbt) for insomnia self-paid, voluntary cbt offered via internet p for insomnia in cancer patients p psychophysiologic insomnia p vs hypnotics in elderly patients p cognitive impairment in rbd patients p and sleepiness/sleep disturbance in elderly p cognitive performance and adenotonsillectomy p auto-cpap vs fixed pressure p effects of cumulative sleep restriction p effects of pulsed electromagnetic fields p and intermittent hypoxia pharmacological strategies for, during military operations p in rbd during sleep inertia p cognitive procedural task learning and rem sleep p cognitive processes during sleep onset p cognitive workload ‘virtual’ assessment p combination therapy for insomnia communication and smiles in newborns p compensatory recruitment with sleep deprivation complex sleep apnea syndrome (comp sas) p compliance, improved, with auto-cpap p comt genotype and narcolepsy response to modafinil p concentration and chronotypes p confusional vs paroxysmal arousals congestive heart failure p continuous positive airway pressure (cpap) auto-cpap in severe osa and arterial hypertension p vs fixed pressure p effects on slow wave sleep p endothelial function in osa , humidified vs dry p increased adherence p influence of upper airway obstruction p nasal p physical intimacy and p for residual excessive sleepiness in osa sexual activity and p sleep-related sweating, reduction in p titration procedures p withdrawal p see also auto-cpap continuous probabilistic approach to sleep/ daytime sleepiness modelling p copper, serum, in osa p core body temperature capsaicin and human sleep p circadian rhythms after minimal invasive surgery p corokind study p , p coronary artery disease in osa, detection of p coronary blood flow regulation corporate health care programs cortical activities at onset of rapid eye movements p in paradoxical sleep p reactivation during sleep spindles synchrony during sleep � european sleep research society, jsr (suppl. ), – keyword index cortico-visceral interaction during sleep p corticotropin-releasing hormone (crh) receptor type knockout mice p site-specific overexpression p cortisol concentrations according to sleep-wake stages in fida children p secretion in depression/sdb p couples analysis of stability/variation in dyadic actigraphic data p sleep timing and diurnal preference in p see also bedpartners covert rem sleep hypothesis cpap see continuous positive airway pressure (cpap) crh see corticotropin-releasing hormone (crh) cyclic alternating pattern (cap) and cheyne–stokes respiration in atrial fibrillation p narcolepsy, microstructural sleep alteration in p as pacemaker of periodic leg movement and sleep quality p danio rerio sleep model arousal threshold/rest homeostasis p pharmacology and adenosine system dark-pulse triggering of rem sleep p daytime and sleep behaviours in infants p daytime complaints and insomnia p daytime distribution patterns of temporal lobe seizure p daytime functioning in insomnia p daytime sleep age-related reduction p cultural aspects – in older people p politics of, in china and slow wave sleep deprivation p see also siesta culture daytime sleepiness see sleepiness, daytime ‘deep sleep’ in sporadic creutzfeldt–jakob disease delayed sleep phase syndrome/disorder (dsps/d) – as entrainment disorder genetic aspects light therapy trials p melatonin treatment p period or phase disorder , dementia different types, polysomnography of p melatonin plus light therapy in p pet therapy program for elderly women p prolonged periods of sleep in nursing home patients p rest-activity cycles in alzheimer’s disease p slow wave sleep in p dementia with lewy bodies p demographic determinants of sleep quality p depression and chronic heart failure p early morning awakenings p eeg characteristics p in elderly people p associated with frequent napping p interpersonal psychotherapy outcome p light therapy in parkinson’s disease p long-range temporal correlations in remission p rem vs nrem sleep deprivation p and rls p vagus nerve stimulation for p sex differences in sleep regulation p sleep-dependent learning p spontaneous sleep and mood during sleep deprivation therapy p stress-related sleep disturbance p depression-like behaviour and serotonin detrended fluctuation analysis of eeg p developmental milestones and sleep trajectories p diabetes type i and memory consolidation p diagnoses, final, and presenting symptoms p diagnosing sleep disorders in corporate health care diagnostic management of hypersomnia p diagnostic telephone interview for restless legs syndrome p diazepam, hypnotic effect of, and dmcm- induced convulsions p differential protein expression after sleep deprivation p disability benefit, assessment of narcolepsy for p diurnal fluctuations of histamine/glutathione in csf p diurnal preference in couples p dmcm-induced convulsions and hypnotic effect of diazepam p dolphins sleeping with continuous activity p dopaminergic role in arousing effects of caffeine/methamphetamine p dopaminergic therapy, augmentation in , p dream content investigation in schizophrenia p dream pictures and neuroholgraphy p dream recall frequency and attachment p dreams, memory sources of, automatic analysis system p driving drowsiness, multimodal simulator assessment p night-time, coffee.napping improving p performance perception during extended wakefulness p , p simulator performance by head-neck trauma patients p sleepiness and alcohol-ascribed accidents p drosophila, acetylcholine in sleep regulation of dyadic actigraphic data, analysis of stability/ variation in p dyssomnias in early childhood p e- and sleep-wake rhythm p early morning awakenings (ema) and depression/anxiety p economic aspects of sbd in neurological disorders economic growth and daytime sleep eeg see electroencephalograms (eeg) effort and effects of sleep restriction p elderly people see older people electrocardiograph (ecg), exercise, value of p electroencephalograms (eeg) age-related changes during sleep deprivation analysis to detect sleepiness brain region activity during nrem sleep coherence function of p delta band upper limit, granger analysis of p delta power and cardiac autonomic activity p and sleep/wake activity p in depression p effects of pilocarpine in waking/sleeping p epilepsy and arousal/sleep disorders graphoelements, scoring of p mapping sleep deprivation effects neonatal brain development p neural correlates of sleep spindles nrem sleep and attention in schizophrenia p and brain temperature oscillations during sleep baseline/recovery sleep genetics of and periodic/non-periodic leg movement power spectra ageing effects p increased by tryptophan p and radio-frequency em fields rem-like features in wake–sleep transition � european sleep research society, jsr (suppl. ), – keyword index rem sleep high frequency eeg activity, and adult attachment styles p sleep eeg for diagnosing seizure p in premenstrual dysphoric disorder p and pulsed electromagnetic fields p sleep eeg fingerprint, heritability of p sleep eeg microstructure and heart rate in sdb p sleep eeg power spectra and bath temperatures and clock gene polymorphisms and heart rate variability p thermophysiological influences on in vasospastic syndrome p sleepy eeg and talk mode em fields p spectral analysis of rem sleep in adhd boys p spectral power in osa patients during sleep deprivation p during sleep inertia p spectral profiles of gaboxadol vs zolpidem p heritability of p theta power p , p trait-like individual differences waking eeg effects of electromagnetic field p in rbd patients p electromagnetic (em) fields gsm/umts , pulsed, dose-dependent effects of p radio-frequency modifying sleep/waking eeg and cerebral blood flow and sleep disorders talk-mode, alerting effect of p and waking eeg effects p electromyographs ofupper airways in osa/ snoring p electrophysiology sensors nanotechnology-based dry wearable , p elevated nasal airflow pressure in apap p em fields see electromagnetic (em) fields embletta vs embla devices in osa diagnosis p vs snorometer in snoring measurement p emotional memories consolidated during sleep p , p emotional responses during game playing in narcolepsy emotionality and chronic partial sleep deprivation encoding difficulties promoting sleep spindle activity p endolaryngeal obstruction, sleep-related p endothelial function in osa and cpap effects on cbf herbest mandibular advancement splint p entrainment circadian pacemakers disorder in neurospora crassa p environmental light in thermoregulation epidemiology p – , p – characteristics of mild vs moderate osa p narcolepsy osa restless legs syndrome epilepsy – and arousal disorders and hypothalamic systems p and rbd and sbd and sleep behaviour disorders p sleep disorders in p sleep disturbance in p epileptic seizures and circadian rhythm p epworth sleepiness scale (ess) p erythropoietin in sporadic vs familial rls p esophageal pressure management p eveningness see circadian preference event-related potentials information processing during sleep p late positive potentials in rem sleep p in sleep disorders p study of attentional modulation evolution of slow-wave sleep/palliopallial connectivity p evt randomised controlled trial excessive daytime sleepiness (eds) in french population p adolescents modafinil, beneficial effects of p predicting carotid atherosclerosis executive function and sleep loss/extension exercise ecg detacting coronary artery disease in osa p exhaled breath on-line analysis during sleep p extended shift work schedule performance and alertness during p subjective/objective sleep analysis p extrapyramidal disease in rbd extraversion and noise-related sleep p facio-mandibular myoclonus, rem sleep-related p factor analysis of cardiovascular risk factors in sleep apnea p familial incidence of insomnia p familial insomnia, fatal p familial night-eating syndrome p familial restless legs syndrome p family conflict in childhood as predictor of insomnia p family roles, effect of, on women’s sleep p fatal familial insomnia p fatigue effects of noise and shiftwork on p in head-neck trauma patients p in multiple sclerosis p and sleep continuity fatigue model predictions of sleepiness p ferritin, serum, in rls patients p first-night effect as model for transient insomnia p flightcrew’s sleep following -hour time zone change p flights, long haul, sleep during p flu-shot, immune responses to, and sleep apnea p fluvoxamine p fmri see functional magnetic resonance imaging (fmri) formerly iron deficient anemia (fida) children cortisol in p nocturnal sleep consolidation p french narcolepsy observatory functional magnetic resonance imaging (fmri) brain region activity during nrem sleep humour processing in narcolepsy p mapping sleep deprivation effects memory consolidation during sleep emotional memories p motor memory p navigation and sleep-dependent change p neural correlates of sleep spindles non-image forming (nif) responses with blue light exposure psychophysiologic insomnia and tesk- switching p gaba-a receptors agonist p , p effect of valerian on p gaba-b/gaba-c receptor antagonist influence on sleep-wake cycle p gaba-ergic cells in basal forebrain, activity across sleep-waking cycle thalamic/hypothalamic, projecting to rem sleep-inducing area p gabapentin for rls p vs ropinirole p gaboxadol p , p , p gaia database on consumption of hypnotics p gastro-oesophageal reflux and osa p � european sleep research society, jsr (suppl. ), – keyword index gender and cardiovascular consequences of arousal p and effects of ageing on eeg power spectra p effects of sleep deprivation in pregnancy p gene expression profiling studies of sleep and wakefulness generalized anxiety disorder and sleep-related rhythmic movement disorder p time series/fractal analyses in anxiety p genetic markers for osas p genetics circadian rhythms clock gene polymorphisms , daytime sleepiness p delayed sleep phase disorder eeg oscillations during sleep nematode model obstructive sleep apnea profile of narcoleptic patients p r /ykp a p restless legs syndrome , p , sleep and wakefulness , sleep architecture/continuity/ eeg spectral profiles p sleep/sleep disorders – genioglossus motor unit activity gestalt therapy for nightmares ghrelin, intrahypothalamic, suppressing sleep p glucose metabolism and sleep deprivation glutathione diurnal fluctuations in csf p granger analysis of eeg delta band upper limit p graphoelements of eeg, scoring of p growth hormone-releasing hormone gsm electromagnetic fields, effects on sleep , guillain–barré syndrome in rbd habitual sleep duration haloperidol p head/neck features in osa vs snoring p headache prevalence of rls/plm p and sleep disorders p health determinants of sleep quality p health locus of control p health-related quality of life p heart rate increment as sleep fragmentation marker and periodic/non-periodic keg mevement and sleep eeg microstructure in sdb p variability analysis to detect sleepiness changes after cumulative sleep restriction p and sleep eeg power spectra p in sleep onset and alternation of stages p heart rate variability/actigraphy monitor p heat shock protein in sleep apnea hemispheric asymmetry in memory consolidation and paw preference in rats hemochromatosis and sleep disturbance p herbest mandibular advancement splint p heritability daytime sleepiness p sleep architecture/continuity/ eeg spectral profiles p sleep eeg fingerprint p high altitude and sleep quality p , p hippocampal expression of zif- in sleep deprivation p hippocampal-neocortical dialogue, pilocarpine effects on p hippocampal neurogenesis and sleep fragmentation p hippocampal neuronal plasticity, sleep modulated p histamine diurnal fluctuations in csf p histamine synthesis inhibitor and orexin- induced wakefulness p hla genotypes in osas p hla in myotonic dystrophy p hla testing of narcolepsy-cataplexy patients p of narcoleptic patients p home testing/treatment for osa p homocysteine, elevated, and rls p hormonal effects of cumulative partial sleep deprivation hormonal sleep enhancement hormone therapy and attention after sleep deprivation p hospital treatment of circadian rhythm sleep disorders p hospitalised psychiatric patients, insomnia in p ht see serotonin humidified vs dry cpap p humidifiers for mechanical ventilation p humour processing in narcolepsy by fmri p hypersomnia, diagnostic/therapeutic management of p hypertension cardiac control during sleep mathematic modeling masked, and obstructive sleep apnea syndrome �non-dipper’ patients and osas p phasic increases in arterial pressure during rem sleep p rem sleep architecture and p and sleep-dependent cardiovascular changes p see also blood pressure hypnogenic activity of tripeptide complexes p hypnotic action of melatonin, time-of-day dependent p hypnotics consumption in la ribera health area p and insomnia mortality p sleep quality and mortality and sleep-wake rhythm p usage in elderly patients p vs cbt in elderly patients p hypobaric hypoxia and sleep quality p hypocretin- deficient narcolepsy identification p hypocretin levels in narcolepsy-cataplexy p hypocretins innervating mesopontine neurons p hypoglycemia counter-regulation during sleep impairs memory consolidation p hypothalamic nuclei in sleeping sickness model p hypothalamic projections to rem sleep- induction area of brainstem p hypothalamic sleep-promoting/arousal sustems p hypothalomus–pituitary–adrenal axis and daytime sleepiness p hypoventilation, nocturnal, in muscular dystrophy p hypoxia hypobaric, and sleep quality p initial ventilatory response in sleeping preterm infants p intermittent, and cognitive function in osas, memories affected by p icam- and cardiovascular morbidity in osa p immune response regulation gene expression in sleeping sickness model p immune responses impaired by sleep apnea p immune system effects of sleep restriction immunoglobulins igg-saporin in sleep regulation p intravenous and cataplexy p in early narcolepsy p impaired sustained vigilant attention in narcolepsy-cataplexy p impulsivity and sleep problems p � european sleep research society, jsr (suppl. ), – keyword index indian sleep patterns individual and time-varying model between sleep and thermoregulation p individual differences in sleep duration/ circadian regulation inemuri infants p bladder voiding and arousal daytime and sleep behaviours p initial ventilatory response to hypoxia p neonatal brain development p nocturnal interplay with postpartum mothers p preterm, video-polysomnography in sleep improved by parent education p sleep state/position and baroflex sensitivity p sleep-wake rhythm after apparent life threatening event p sleeping bags and body temperature p yawning distribution across hours p see also children information flow between hemispheres during sleep stages p information processing during sleep p insomnia p – among primary care physicians p and autonomic function p and chronic heart failure p chronic intrinsic p chronic sleep onset, and melatonin cognitive–behaviour therapy for p plus medication and daytime complaints p diagnosis by actigraphy p in elderly people p , p , p cbt vs hypnotics p evt trial familial incidence p family conflict in childhood as predictor p fatal familial p gaboxadol for p , p and habitual sleep duration p in hospitalised psychiatric patients p incidence in train drivers p ises for assessing self-efficacy p memory consolidation during sleep mortality p natural history of p neurobiology of p night-to-night variations in sleep structure nocturnal eating p occupational/daytime functioning p over -year period in sweden p perceived, in pregnancy p psychophysiologic see psychophysiologic insomnia (pi) psychophysiological theories p quality of life p restless legs syndrome after renal transplant self-paid, voluntary cbt offered via internet p self-report in pregnancy p vs recorded p sleep-related attentional bias stress-related sleep disturbance p symptom profile p therapy with citalopram p and training for successful aging p transient gaboxadol for p model of p trazodone, longitudinal effects of p validation of translational model and vigilance testing affected by skin warming p zolpidem for p insulinoma resenting as night paroxysmal movement disorder p interleukins il- inhibiting firing rate of cholinergic neurons p il- and nocturnal desaturation in sleep apnea p internet see web-based services interpersonal psychotherapy outcome in depression p intrahypothalamic ghrelin supressing sleep p intraoral snoring therapy (ist) p intrathecal baclofen, effects on sleep/ ventilation p iron levels in rls patients p ises for assessing self-efficacy in insomnia p juvenile/young offenders, sleep problems in p k complexes, visually-triggered p kickstrip p kleine–levin syndrome p laser evoked responses fo pain during sleep late positive potentials in rem sleep p laterodorsal tegmental nucleus neurons, inhibition of p learning-associated odour in memory consolidation learning failure in children with occult sleep disturbances p learning of motor-skills after slow-wave sleep suppression learning, offline, developmental differences in learning potentiation with slow oscillations p left ventricular function p , p leg electromyography leptin in osa p levodopa p light, bright, to alleviate shift work p light–dark cycle length, effects of light entrainment in neurospora crassa p light exposure patterns effects on time-place learning task p in healthy older people p in menopausal women p light, moderate intensity, and circadian pacemaker entrainment light therapy and behaviour for shiftworkers effects in parkinson’s disease p plus melatonin in demented elderly p limb movement during sleep muscle fibres in spinal cord injury rats p see also periodic limb movement (plm) limbic system in rbd linkage studies in restless legs syndrome p lipopolysaccharide and osa lisuride, transdermal p local field potentials (lfp) mapping sleep- wake states p locus coeruleus (lc) in memory consolidation in slow wave sleep locus of control and sleep p low-resolution electromagnetic tomography (loreta) p , lucid dreaming therapy for nightmares lymphocyte changes in sleep deprivation/ recovery maca and sleep structure/sleep inset period p magnetic resonance spectroscopy in kleine–levin syndrome p metabolic changes in amygdala in narcolepsy p mandibular repositioning appliances p , p efficacy/compliance p polysomnography p mapping sleep deprivation effects marijuana users, sleep during abstinence p mathematic modeling of cardiac control during sleep mathematical model of sleep p mdl p medical students, sleepiness in p medication plus cognitive–behaviour therapy for insomnia melanin-concentrating hormone receptor p � european sleep research society, jsr (suppl. ), – keyword index melatonin circadian periodicity after minimal invasive surgery p for delayed sleep phase disorder p effects on adhd and insomnia hypnotic action, time-of-day dependent p in menopausal women p plus light therapy in demented elderly p and polysomnographic sleep parameters p in rbd patients p safety p therapy for rem sleep behaviour disorders p memory and sleep organization p memory consolidation during sleep cerebral asymmetry declarative memory p developmental differences emotional memories p , p erp correlates in serial reaction time task p explicit memory task p hypoglycemia during sleep impairing p implicit/explicit memory p increasing sleep spindles p learning-associated odour motor memory p , p motivation-dependent p motor sequence learning task p napping p , p noradrenergic system in primary insomnia procedural memory p �rendering’ of information p in schizophrenia p selective benefit to weak memory traces p sleep spindles , p slow wave activity memory performance in depression p and eeg theta power p memory prospective task and sleep organization p memory retrieval changes after overnight sleep p memory-sleep relationship in alzheimer’s disease p memory sources of dreams, automatic analysis system p menopausal women restless legs syndrome (rls) in p sleep quality p mental conditions see psychiatric disorders mesopontine neurons innervated by hypocretin/orexin p metabolic effects of sleep duration/body mass index p metabolic parameters in narcolepsy p in thermoregulation metabolic syndrome in osa p , p methamphetamine, dopaminergic role in arousing effects p microstructural sleep alteration in narcolepsy p migraine p minimal invasive surgery, circadian rhythms after p mitral annular tissue doppler systolic velocities (matdsv) in osas p mobile communication delaying sleep onset p and sleep – and waking eeg effects p modafinil in cpap withdrawal p effects on excessive daytime sleepiness p and melanin-concentrating hormone receptor p narcolepsy symptoms and comt/sert genotypes p psychometric performance under p mood benefits in eds with modafinil p in depression during sleep deprivation therapy p effects of napping on premenstrual women p improvement with melatonin/light therapy p and insomnia in pregnancy p and sleep phase before awakening p moon phases and mental conditions p morningness see circadian preference morphostatic correlates and sleep apnea p mortality increased, and nightmares restless legs syndrome p sleep quality and hypnotics motor cortex excitability after sleep deprivation p motor memory enhancement, sleep-dependent p , p motivation-dependent consolidation p post-training naps p motor responses during game playing in narcolepsy motor sequence learning task p motor-skills learning and slow wave sleep suppression motor symptoms and light therapy in parkinson’s disease p motor unit activity in genioglossus movement p movement disorders and sleep-related breathing disorders see also specific disorders mozart effect in relaxation therapy p mslt/mwt, alternative to p mslt vs mwt, effects of acute stress on p multilacunar encephalopathy with median pontine lesion p multiple sclerosis fatigue/sleepiness in p and new form of rls p multiple system atrophy p multitask performance recovery after sleep deprivation p muscle activity during rem sleep in rbd muscle fibres in rats with limb movement during sleep p muscle pain and sleep p muscular dystrophy, nocturnal hypoventilation in p music effect in relaxation therapy p music improving sleep quality p myheart physiology sensors myotonic dystrophy type i childhood onset p hla and sleep onset rem p nanotechnology-based dry sensors napping and age-regulated changes to sleep regulation p and implicit/explicit memory consolidation p improving night-time driving p and mood in women with premenstrual symptoms p nocturnal, effects on performance/sleepiness p post-training memory consolidation p school shifts in croatian adolescents and sleep spindle activity changes p students’ sleep patterns in japan whole body cooling at work, normalization of see also daytime sleep narcolepsy assessment for disability benefit p childhood comt/sert genotypes and modafinil response p early, effect of intravenous immunoglobulins on p emotional/motor responses in game-playing french narcolepsy observatory genetic profile of patients p humour processing fmri assessment p hypocretin- deficient patients p metabolic changes in amygdala p metabolic parameters p microstructural sleep alteration in p psychometric performance under modafinil p quality of life p rem sleep regulation p rls prevalence p skin temperature and sleep propensity p � european sleep research society, jsr (suppl. ), – keyword index sleep onset rem preiods, temporal distribution of p sodium oxybate-induced changes in alertness/sleep continuity in p swiss narcolepsy scale p tnf receptor plasma levels p see also cataplexy narcolepsy-cataplexy hla testing and hypocretin levels p impaired sustained vigilant attention p natural history of insomnia p navigation and sleep-dependent change p neck circumference and respiratory disturbance p nematode sleep model neocortex mechanisms of autonomous spindle oscillations p synaptic changes induced by sleep spindles- related firing patterns neural correlates of sleep spindles neurobehavioural functioning in cpap withdrawal p neurobiology of insomnia p neurodegenerative disorders rbd as early marker p and sleep-related breathing disorders economic/organizational aspects neurogenesis, hippocampal, and sleep fragmentation p neuroholography and dream pictures p neuroleptic drugs dream content investigation in schizophrenia p rest-activity cycles in alzheimer’s disease p neurological comorbidity of complex sleep apnea syndrome p neurological symptoms and sleep disorders p neurology p – neuromuscular disorders and sleep-related breathing disorders neuronal activation in preoptic area during sleep waking-specific neuronal correlates of sleep-dependent declarative memory consolidation p neuronal plasticity modulated by paradoxical sleep p neuropeptide y and leptin in osa p promoting wakefulness y -receptor agonist p neuropeptides, hypnogenic activity p neurospora crassa, light entrainment in p neuroticism and noise-related sleep p neutrophil apoptosis in sleep apnea p night-eating syndrome (nes) p night paroxysmal movement disorder, insulinoma presenting as p nightmares cognitive therapy increased mortality in men nightworkers see shiftworkers nitric oxide (no) p p-nitrophenylphosphatase, sleep deprivation induced p nmda receptor function p nocturia in older people associated with frequent napping p nocturnal eating and insomnia p nocturnal frontal lobe epilepsy nocturnal hypoventilation in muscular dystrophy p nocturnal interplay between postpartum mothers and infants p nocturnal sleep consolidation in fida children p noise and fatigue as function of age p noise-related sleep/performance alterations p �non-dipper� hypertension and osas p non-image forming (nif) responses with blue light exposure non-migraine headache p non-periodic leg movement (plm) non-rem sleep see nrem sleep non-seasonal affective disorder, light therapy trials in p noradrenergic system in memory consolidation , nrem parasomnias, new variant p nrem sleep in adhd children p and arousal events brain region activity brain temperature eeg and attention in schizophrenia patients p spectral profiles of gaboxadol vs zolpidem p tms-evoked potentials nrem sleep-dependent thalamocortical resonance in asperger’s syndrome p nurse specialists delivering cbt p obesity hypoventilation syndrome p obesity, sleep and physical inactivity p objective/subjective sleep analysis of extended shift work schedule p , p obsessive–compulsive disorder, sleep onset rem periods in p obstructive sleep apnea (osa) p , asthma/gastro-oesophageal reflux p auto-cpap in p cardiac surgical outcomes cardiorespiratory coupling reducing sympathetic excitation p cardiovascular morbidity and circulating icam- p and cbf regulation cpap for residual excessive sleepiness diagnosis by embla vs embletta devices p eeg spectral power during sleep deprivation p electromyographs of upper airway p endothelial function in and cpap head/neck features p home testing/treatment p hypoxia and cognitive function irregular work hours in truck drivers p mandibular advancement oral appliance p herbest p measurement p metabolic syndrome in p , p mild vs moderate p neuropeptide y and leptin p oropharyngeal vibration and thermal sensitivity portable recording device p psychic disorders p as risk factor for brain small vessel disease p risk factors p serum copper/zinc p sleep-related sweating in cpap p and snoring diagnosis/treatment p susceptibility locus vascular responses in obstructive sleep apnea syndrome (osas) aortic stiffness as cardiovascular predictor p and bruxism p hla genotypes p left ventricular function p , p mandibular repositioning appliances p and masked hypertension memories affected by hypoxi p palatal surgery for p prevalence among �non-dipper’ hypertensives p in neurological patients p right ventricular function p sleepiness/performance tests p snoring frequency analysis p occult sleep disturbances and learning failure p occupational functioning in insomnia p octodon degus, sleep homeostasis in odour, learning-associated, in memory consolidation oesophageal pressure management p offline learning, developmental differences in older people arousal thresholds to smoke alarm signals p body movements during sleep p cbt vs hypnotics for insomnia p � european sleep research society, jsr (suppl. ), – keyword index daytime sleepiness in p , p demented patients prolonged periods of sleep in p rest-activity cycles in p depression in p discrepancy between self-report and recorded sleep p effects of noise and shiftwork on fatigue p healthy, light exposure patterns in p hypnotics usage p melatonin plus light therapy in dementia p napping and associated disorders p sdb/insomnia in p sleep disturbance p and cognitive impairment p sleepiness and cognitive impairment p social comparison phenomenon p task-switching in patients with insomnia p olfactory findings in rbd on-line behavioural state detection in sleep- deprived rats p open-eyed sleep unilateral eye closure p , p visually-triggered k complexes p optical pulse wave sensor assessment of sleep quality p oral contraceptive use and psychomotor vigilance task p orexin-containing neurons in sleeping sickness models p orexins crh receptor type knockout mice p innervating mesopontine neurons p oropharyngeal vibration in snoring/osa osa see obstructive sleep apnea (osa) osas see obstructive sleep apnea syndrome (osas) outcome definitions in rls p oxidative stress and heat shock protein in sleep apnea pacifier use for sleeping infants p pain in older people associated with frequent napping p palatal surgery for osas p palliopallial connectivity evolution in mammals/birds p paradoxical sleep (ps) and carotid occlusion p decoupling of thalamic/cortical activities p modulating neuronal plasticity p parahippocampal ripples p parasomnias p – in early childhood p parent education improving infant sleep p parkinson’s disease/parkinsonism light therapy p rbd in , p sleep disorders p paroxysmal vs confusional arousals partial sleep deprivation see sleep restriction patient training for cataplexy p paw preference and hemispheric asymmetry pediatrics p – , p – intensive care, sleep quality in p see also adolescents; children; infants per oscillations, cellular per gene vntrs and sleep/waking preferences p perfectionism and sleep disturbance p performance deterioration during extended work schedule p effects of sleep restriction p tests in osas p periodic limb movement (plm) automatic scoring wtih threshold based algorithm p and blood pressure cyclic alternating pattern as pacemaker of gabapentin for p heart rate/eeg changes overestimation by actigraphy p prevalence in migraine/non-migraine headaches p and sleep disturbance p see also limb movement during sleep; restless legs syndrome periodic limb movement during sleep (plms) and adhd p and blood pressure and kickstrip p periodic limb movement while awake (plmw) periodic sharp wave complex p peripheral arterial tone during sleep personality p – , p – pet therapy program for dementia patients p pharmacokinetic profile of zolpidem p pharmacology research in animals p – in zebrafish model phenytoin p physical inactivity, obesity and sleep p physical intimacy and cpap p physicians, primary care, insomnia in p physiological parameters sleep quality at high altitude p sleeping infants with pacifiers p physiology sensors see electrophysiology sensors pilocarpine effects on hippocampal-neocortical dialogue p effects on sleep eeg in waking/sleeping p pituitary adenylate cyclase activating peptide (pacap) and sleep regulation p placebo effect of caffeine p planning ability benefits in eds with modafinil p plasticity p associative motor plasticity in rls p neuronal, modulated by paradoxical sleep p synaptic altered by sleep deprivation p slow wave activity and polysomnographic sleep parameters and melatonin levels p polysomnography p chronic intrinsic insomnia p in different types of dementia p findings in rls p �good� sleepers and aging p rbd in parkinson’s disease p from reduced sensor set p sleep quality portable recording device for respiratory disturbance in osa p positron emission tomography (pet) post-nap effect as model for transient insomnia p post-training memory consolidation p postpartum mothers p posttraumatic stress disorder p prader–willi syndrome and sleep apnea p upper airway infection and respiration in sleep p pramipexole p , p , p pravastatin p pre-to-post-sleep changes in event-related potentials p prediction of quality of life in sleep apnea p pregabalin in insomnia pregnancy gender-specific effects of sleep deprivation p insomnia/stress, perceived p rls in p self-report insomnia/mood states p premenopausal women and rls p premenstrual dysphoric disorder (pmdd) p premenstrual symptoms, napping and p preoptic area neuronal activation during sleep prepotent response suppression in sleep deprivation p primary care consultation predictors p progesterone effects on sleep/cognition in postmenopausal women p progressive supranuclear palsy in rbd � european sleep research society, jsr (suppl. ), – keyword index prokineticin gene, lack of prolactin adaptation to sleep restriction/ recovery p prolonged periods of sleep in demented nursing home patients p prothipendyl vs quetiapine p psychiatric disorders during new/full moon p and osa p sleep in p psychiatric patients, hospitalised, insomnia in p psychogenic symptoms in menopausal women p psychometric performance under modafinil p psychomotor performance and adenosine system p psychomotor vigilance task during sleep deprivation p psychophysiologic insomnia (pi) cognitive–behavioural therapy (cbt) p quetiapine in p sleep-onset and task switching in elderly p psychophysiological theories of insomnia p pulsed electromagnetic fields, dose- dependent effects of p pyy - effects on sleep-wake rhythm p quality of life insomnia p in narcolepsy p and rls, pramipexole for p in sleep apnea p in sleep disordered breathing p see also health-related quality of life quality of sleep see sleep quality quetiapine p , p vs prothipendyl p r /ykp a non-amphetaminic stimulant p radio-frequency electromagnetic (em) fields modifying sleep/waking eeg and cerebral blood flow and sleep disorders radiological parameters of sleep apnea/ stroke p rapid eye-movement sleep see rem sleep rapid screening for restless legs syndrome p rbd see rem sleep behaviour disorder (rbd) recognition memory and sleep deprivation and slow wave sleep p recovery sleep and a receptor antagonist p after deprivation induction in basal forebrain cholinergic cells after restriction p varying time in bed sleep doses p refugees from abkhazia, sleep complaint assessment in p regional cerebral blood flow and radio- frequency em fields relationships of health night workers p relaxation therapy, mozart/music effect in p rem-like eeg features in wake–sleep transition rem sleep architecture in spontaneously hypertensive rats p and attachment p basal forebrain in brain processes supplying energy for p and cognitive procedural task learning p cortical activities at onset of rapid eye movements p dark-pulse triggering p high frequency eeg activity, and adult attachment styles p late positive potentials p phasic increases in arterial pressure in hypertension p regulation long-term aspects of p in narcoleptics p and schizophrenia p and serotonin spectral analysis in adhd boys p in spinocerebellar ataxia type p subthalamic nucleus activity p tms-evoked potentials transient blood pressure surges p rem sleep behaviour disorder (rbd) p in childhood narcolepsy cognitive impairment and slowing of waking eeg p cognitive performances early marker for neurodegeneration p and epileptic seizures guillain–barré syndrome limbic system in melatonin for p , p olfactory findings, abnormal in parkinson’s disease/parkinsonism , p phasic/tonic muscle activity progressive supranuclear palsy in serum sex hormone levels in p synucleopathies absence of in tauopathies p rem sleep-induction area of brainstem, gabaergic projections to p rem sleep-related facio-mandibular myoclonus p rem sleep without atonia p renal failure patients with rls p renal transplant, insomnia/rls after �rendering’ of information during sleep p residential status and sleep regularity of students p residual excessive sleepiness, cpap for respiratory disturbance and bmi/sleepiness p respiratory disturbance index (rdi), portable recording device for p rest-activity cycles in demented elderly women p rest homeostasis in zebrafish p restless legs-like syndrome restless legs syndrome (rls) p – , – , p – associative motor plasticity, impaired p auditory startle mechanism disinhibition augmentation dopaminergic therapy , p guidelines in long-term treatment – severity assessment augmentation severity rating scale daytime sleepiness in p in depression p vagus nerve stimulation for p diagnosis diagnostic telephone interview, validation of p drug treatment outcome definitions p elevated homocysteine in renal failure patients p epidemiology/social costs erythropoietin in sporadic vs familial p fmri studues gabapentin for p vs ropinirole p genetics , insomnia after renal transplant intermittent dosing of ropinirole p linkage studies in austrian families p in menopausal women p mortality p polysomnography findings p pramipexole for p , p , p in pregnancy p in premenopausal women p prevalence in migraine/non-migraine headaches p in narcolepsy p psychopathological symptoms and treatment outcome p rapid screening p and restless legs-like syndrome in rheumatoid arthritis p , p � european sleep research society, jsr (suppl. ), – keyword index ropinirole for p , p vs gabapentin p rotigotine patches p serum ferritin levels in p symptomatic for associated with multiple sclerosis p transdermal lisuride p unilateral p see also periodic leg movement (plm) retinoid pathway during sleep rheumatoid arthritis, restless legs syndrome in p , p rhythmic movement disorder (rmd) p risperidone p rls see restless legs syndrome (rls) ropinirole for rls p , p , p vs gabapentin p rotigotine patches p s- b protein levels in osas p in sleep apnea p salt-sensitive hypertension p saporin p schizophrenia dream content investigation p memory consolidation during sleep in p nrem sleep eeg and attention performance p and rem sleep p school napping in japan school performance and chronic sleep reduction p and sleep quality in adolescents p school shifts in croatian adolescents sleep patterns in adolescents p screening for sleep disorders in corporate health care sdb see sleep disordered breathing (sdb) seasonal affective disorder (sad), light therapy trials in p seasonal light therapy for shiftworkers seizures frequency of, and sleep disorders p night sleep eeg monitoring p temporal lobe, daytime distribution patterns of p selective consolidation of weak memory traces p selective serotonin re-uptake inhibitor and procedural memory consolidation p semantic priming task dissipating sleep inertia p sensors for recording electrophysiology sepsis-induced sleep alterations in rats p serial reaction time (srt) task p serotonergic activation, effects of, on sleep patterns p serotonergic modulation of activity-rest rhythm p serotonin signaling in sleep deprivation in sleep and depression-like behaviour synthesis, effects of adenosine agonists on p serotonin- a receptor system, desensitized by sleep restriction p serotonin- a antagonists, effects on rat sleep parameters p sert genotype and narcolepsy response to modafinil p serum copper/zinc in osa p serum ferritin in rls patients p serum sex hormone levels in idiopathic rbd p sex differences in sleep regulation in depressed adults p sex hormone levels in idiopathic rbd p sexual activity and cpap p shiftworkers bright light for p effects of age/experience on health/sleep p effects of noise on fatigue p extended work schedule, performance and alertness during p health workers’ social roles and relationships p light therapy and behaviour sleep and circadian adaptation p sleep length/sleepiness differences p siesta culture in india simulated classroom tasks p simulator assessment of driver drowsiness p of head-neck trauma patients p site-specific crh overexpression p skin temperature changes during sleep p infant bedding p sleep depth sleep propensity p and sleep propensity and vigilance testing p sleep alterations, sepsis-induced p sleep and daytime behaviours in infants p sleep and mental conditions during new/full moon p sleep and progesterone in postmenopausal women p sleep and wakefulness in hungarian adolescents p sleep apnea apnea duration index (adi) p atherosclerosis risk factors p cardiovascular risk factors p central idiopathic, due to cheyne–stokes respiration p see also sleep disordered breathing (sdb) complaints profile p and immune responses to flu-shot p incidence in train drivers p interleukin (il)- and nocturnal desaturation in p morphostatic correlates p obstructive see obstructive sleep apnea (osa) oxidative stress and heat shock protein prader–willi syndrome p quality of life prediction p and rem sleep behaviour disorder p s- b protein levels p and smoking affecting cardiovascular risk p and stroke p sleep apnea-hypopnea syndrome (sahs) p sleep architecture heritability p in mammals/birds p in spontaneously hypertensive rats p sleep behaviour disorders in children on antiepileptics p sleep changes in rats exposed to social defeats p sleep classification, automatic, based on single eeg channel p sleep complaint assessment in refugees from abkhazia p sleep continuity heritability p predicting reduced sleepiness and zoldipen p sleep control genetics expression profiling studies homeostatic, and cholinergic neurons p sleep debt of teenagers p and total sleep time in uk varying time in bed sleep doses p sleep deficit, apparent sleep-dependent learning motor memory enhancement and depression p slow wave sleep suppression sleep deprivation – , p – , p – a receptor antagonist and sleep recovery p adenosine a receptor occupancy and adult somnambulism p age-related eeg changes and attention in women p basal forebrain neuron inhibition p caress device for studies p cholinergic cell activity chronic partial, and serotonon signaling compensatory recruitment with cumulative, recovery from p and delayed sleep phase disorder � european sleep research society, jsr (suppl. ), – keyword index differential expression proteomics after p in early pregnancy, effects on offspring p eeg oscillations during recovery sleep eeg spectral power in osa p fmri/eeg mapping effects of german adolescents p and glucose metabolism hippocampal expression of zif- p hormonal sleep enhancement after impact on epworth sleepiness scale p lymphocyte changes motor cortex excitability after p p-nitrophenylphosphatase induction p and offspring mortality in rats p partial see sleep restriction prepotent response suppression p psychomotor performance and adenosine system p and recognition memory rem vs nrem in depression p slow wave activity after p slow wave sleep p therapy in depression p total modulation of vs partial, in women p unihemispheric vs bihemispheric p women in psychomotor vigilance task p see also sleep restriction; wakefulness, extended sleep deprivation-induced sleep rebounds p sleep depth and skin temperature sleep disordered breathing (sdb) p – , p – , p – , p – and arousal from sleep chiari malformations p children before/after adenotonsillectomy p blood pressure measurement, overnight p cortisol p and epilepsy in neuro-degenerative disorders , and neurodegenerative disorders economic/organizational aspects prevalence in elderly p quality of life p snoring frequency analysis p in stroke surgery failure p and transcutaneous co tension p see also specific disorders sleep disorders accidents, home/leisure p autonomic correlates of arousal childhood onset myotonic dystrophy type i p corporate screening and diagnosis and epilepsy heart rate as sleep fragmentation marker in juvenile/young offenders p pre-to-post-sleep changes in event-related potentials p predictors of primary care consultation p and radio-frequency em fields seizure frequency p subjective symptomology p and weight gain sleep disturbance of adolescents/preadolescents p in alzheimer’s disease , acetylcholine- esterase imaging p and cognitive impairment in elderly p in elderly people p in epileptic patients p and hemochromatosis p lack of, in posttraumatic stress disorder p muscle pain p and perfectionism in young males p and periodic limb movement (plm) p pramipexole for p in rls, ropinirole for p stress-related p sleep duration effects on metabolic measures p individual differences in shiftworkers p and insomnia complaints p trait vs state p weekend effect p see also habitual sleep duration sleep during long haul flights p sleep eeg power spectra and clock gene polymorphisms thermophysiological influences on sleep eeg spectra and bath temperatures sleep extension school shifts in croatian adolescents selective attention/executive function sleep fragmentation marker reducing hippocampal neurogenesis p sleep habits of adolescents/preadolescents p of german adolescents p of portuguese students p of swedish adolescents, changes in p sleep homeostasis in nematode model short term, of rem sleep sleep in psychiatric disorders p sleep inertia dissipation in semantic priming task p eeg spectral power/cognitive performance p sleep instability and adhd sleep loss as cardiovascular risk factor selective attention/executive function sleep, mathematical model of p sleep mechanisms – sleep modelling p sleep, obesity and physical inactivity p sleep onset cognitive processes during p effects of maca p and heart rate variability p psychophysiologic insomnia and delayed sleep phase disorder sleep onset latency (sol) cognitive–behaviour therapy for p thermophysiological influences sleep onset rem periods in myotonic dystrophy p in narcolepsy p in obsessive–compulsive disorder p sleep organization correlating with attention/memory in autism p and memory prospective task p sleep parameters in depression p in elderly people, self-report vs recorded p indicating sleep disorders, mathematical model for p polysomnographic, and -sulfatoxymelatonin levels p and training for successful aging p sleep patterns p adolescents attending school in shifts p in adolescents in usa athletes, finishing vs non-finishing p in croatian students disruption of, and offspring mortality in rats p in dolphins with neonates p and eeg delta power p in india in japanese students mapping by local field potentials p serotonergic activation, effects of p site-specific crh overexpression, effects of p in swiss students p sleep phase before awakening p sleep pressure increasing, after ayahuasca administration p in vasospastic syndrome p sleep propensity daytime, age-related reduction in p and skin temperature p , sleep quality assessment with optical pulse wave sensor p awakening stage, effects of p � european sleep research society, jsr (suppl. ), – keyword index and cyclic alternating patterns p demographic/socioeconomic/health determinants p and emotional arousal p evaluation in school children p and gender roles in women p high altitude with hypobaric hypoxia p physiological parameter changes p hypnotics and mortality and menopause p music, improved by p in pediatric intensive care p and pet therapy program p polysomnography school performance in adolescents p and training for successful aging p sleep quality-related self-categorisations of elderly women p sleep regulation acetylcholine in drosophila age-related changes p after multiple naps p in basal forebrain/hypothalamus – brain-gut peptides in p in igg-saporin-treated rats p melanin-concentrating hormone receptor in p orexin, role of p and pituitary adenylate cyclase activating peptide (pacap) p sex differences in depression p sleep-related breathing disorders (sbd) see sleep disordered breathing (sdb) sleep-related endolaryngeal obstruction p sleep-related movement disorders see also periodic leg movement (plm); restless legs syndrome (rls); rhythmic movement disorder (rmd) sleep restriction altering amygdala function and stress reactivity p caress device for studies p cumulative, effects on cognitive functions p and daytime sleepiness/hpa axis relationship p desensitizing serotonin- a receptor system p and driving performance perception p effects on performance, sleepiness and effort p heart rate variability changes after p hormonal effects immune system effects sleep dose-response study of recovery p slow wave activity dynamics after p thyrotropin/prolactin adaptation p vs total deprivation p sleep spindles activity after visuo-motor learning p autonomous oscillations, mechanism of p fast vs slow in explicit memory consolidation p increased by motor sequence learning task p learning-related changes during napping p in memory consolidation , low-resolution electromagnetic tomography and memory consolidation during sleep p neural correlates and parahippocampal ripples p role of electrical synapses p time series/fractal analyses in anxiety p wavelet detection p sleep stages and body movements in very old subjects p and effects of ageing on eeg power spectra p and heart rate variability p and information flow between hemispheres p sleep state and baroflex sensitivity in infants p and blood pressure in sleeping infants p and initial ventilatory response to hypoxia p sleep structure and clock gene polymorphisms effects of maca p insomnia, night-to-night variations in and mandibular repositioning appliances p in sporadic creutzfeldt–jakob disease state- vs trait-specific variability sleep suppression by intrahypothalamic ghrelin p sleep timing in couples p sleep trajectories and development milestones p sleep variables as predictors of bipolar disorder p sleep vs circadian influences on cardiovascular activity sleep-wake disturbances after traumatic brain injury p sleep-wake evaluation, ambulatory, in blind subjects p sleep-wake history determining level of slow wave activity after sleep deprivation p sleep-wake rhythm after apparent life threatening event in infants p effects of bedpartners p effects of e- p effects of y -receptor agonist on p gabab-gabac receptor antagonist, influence of p heart rate variability/actigraphy monitor p sleep-wake stages and cortisol plasma concentrations p sleep–wake transition see wake-sleep transition sleep/waking preferences and per gene vntrs p sleepiness additive model of subjective judgements p adolescents in shift schooling p and alcohol-ascribed driving accidents p blink modifications, quantitative analysis of p circadian rhythm in sleep inertia on awakening and cognitive impairment in elderly p daytime and chronic heart failure p continuous probabilistic approach p in elderly people p , p , p heritability p and hpa axis p in untreated rls p detection in workplace/traffic – effects of sleep restriction p fatigue model predictions p in french adolescents in head-neck trauma patients p in health night workers p individual differences in shiftworkers p in medical students p in multiple sclerosis p prediction by three process model rating in monotonous performance situation p and respiratory disturbance index p and simulated accident risk p and sleep continuity and slow eye movements p tests in osas p see also excessive daytime sleepiness (eds); residual excessive sleepiness sleeping bags for infants p sleeping position and blood pressure in infants p , p sleeping sickness immune response gene expression in p nitric oxide duality in p orexin-containing neurons in rodent models p sleeplessness in autistic children, behavioural intervention for p sleepwalking see somnambulism slow eye movements (sems) predicting eeg power changes p slow oscillation stimulation for learning p � european sleep research society, jsr (suppl. ), – keyword index slow oscillations, topography of p slow wave activity after ayahuasca administration p and gaboxadol p after sleep restriction p , p and synaptic plasticity slow wave sleep (sws) in dementing illness p deprivation and daytime sleep propensity p evolution in mammals/birds p improved by gaboxadol p memory consolidation and recall cues and ncpap p recollection in recognition memory p spindle activity in suppression and motor skills learning small vessel disease of brain, risk factors for p smiles and communication in newborns p smoke alarms and arousal thresholds p smoking and sleep apnea increasing inflammatory marker levels p snoring diagnosis/treatment p electromyographs of upper airway p frequency analysis p measurement p comparison of embletta vs snorometer p oropharyngeal vibration and thermal sensitivity snorometer p social comparison phenomenon p social costs restless legs syndrome social defeats and sleep changes p social roles of health night workers p socioeconomic determinants of sleep quality p sodium oxybate-induced changes in alertness/sleep continuity in narcolepsy p sofres isv survey somnambulism, adult clinical features/diagnosis p precipitating factors in p somnolence see sleepiness spatial memories and hypoxia in osas p spindles see sleep spindles spinocerebellar ataxia type , rem sleep in p spontaneous sleep in depression during sleep deprivation therapy p sporadic creutzfeldt–jakob disease, ‘deep sleep’ in sporadic restless legs syndrome p state-specific variability in sleep structure status dissociatus in multilacunar encephalopathy p status parasomnicus p stress effects on mslt vs mwt p induced by caress device p perceived, in pregnancy p stress hormones and cumulative partial sleep deprivation stress reactivity altered by sleep restriction p stress-related insomnia, pregabalin for stress-related sleep disturbance p stridor stroke bilateral paramedian thalamic/upper brain stem p and sleep apnea p and sleep-related breathing disorders students’ sleep patterns in croatia p in japan in switzerland p subjective judgements of sleepiness, additive model of p subjective/objective sleep analysis p , p subthalamic nucleus activity in rem sleep p sudden infant death syndrome (sids) pacifier use p sleeping bag use p sundowning, reduction of with pet therapy p suprachiasmatic nucleus in thermoregulation susceptibility locus for obstructive sleep apnea (osa) sweating, sleep-related and cpap treated osa patients p swiss narcolepsy scale p symptomology, subjective, in sleep disorders p symptoms, presenting, and final diagnoses p synapses, electric , organizing sleep spindles p synaptic plasticity altered by sleep deprivation p slow wave activity and synchronous likelihood, usefulness of synucleopathies in systolic mitral annular motion (smam) in osas p tauopathies, parasomnias in p teenagers, sleep schedules of p temperature bathing, and sleep eeg spectra whole body, and napping see also brain, temperature; core body temperature; skin temperature; thermoregulation temporal coupling of parahippocampal ripples and sleep spindles p temporal lobe seizure, daytime distribution patterns of p temporal memories and hypoxia in osas p thalamus activities in paradoxical sleep p mechanisms of autonomous spindle oscillations p projections to rem sleep-induction area of brainstem p thalamocortical resonance in asperger’s syndrome p therapeutic management of hypersomnia p thermal sensitivity in snoring/osa thermal stress and infant bedding p thermophysiological influences on sleep onset latency thermoregulation – individual and time-varying model p thip p mechanism of action p three process model predicting sleepiness thyrotropin adaptation to sleep restriction/ recovery p time-of-day dependent hypnotic action of melatonin p time-place learning task, effects of light regime on p time zone change, flightcrew’s sleep following p tnf receptor plasma levels in narcolepsy p total sleep deprivation and attentional processes total sleep time and sleep debt in uk traffic, detection of sleepiness in – traffic noise model of insomnia train drivers’ incidence of insomnia/sleep apnea p training for cataplexy patient s p trait-like individual differences in sleep eeg trait-specific variability in sleep structure transcranial magnetic stimulation (tms)- evoked potentials transcranial magnetic stimulation (tms) study p transcription regulatory protein expression in sleep deprivation p transcutaneous co tension and sdb p trazodone p tri-peptide complexes, hypnogenic activity of p tryptophan intake and circadian rhythm of urine output p and eeg power spectrum p tubilomamillary neuron activation, waking- specific � european sleep research society, jsr (suppl. ), – keyword index umts electromagnetic fields, effects on sleep unihemispheric vs bihemispheric sleep deprivation p unilateral eye closure p , p unilateral restless legs syndrome p upper airway infection in prader–willi syndrome p upper airway obstruction and nasal cpap p upper airway resistance syndrome (uars) p upper airways electromyographs in osa/ snoring p urine output, circadian rhythms of p vagus nerve stimulation for rls in depression p valerian as adenosine receptor agonist p effect of extract on gaba-a receptors p validation questionnaire on circadian preferences p watch-pat p valproate p variable number tandem repeats (vntrs) inper gene p vascular responses in osa vasospastic syndrome p ventilation effects of baclofen p mechanical p non-invasive, improving vigilance in p video-polygraphic demonstration of status dissociatus p videopolysomnography (vpsg) in night-eating syndrome p for preterm infants vigilance non-invasive ventilation improving p recovery after sleep deprivation p testing affected by skin warming p visual detection-based apnea indexes p visually-triggered k complexes p visuo-motor learning, sleep spindles activity after p wake-after-sleep onset (waso) p wake-rem sleep eeg coherence in autism p wake-sleep transitions genioglossus motor unit activity rem-like eeg features in wakefulness alpha-fluoromethylhistidine inhibiting p basal forebrain in extended and perception of driving performance p see also sleep deprivation genetics expression profiling studies neuropeptide y promoting pharmacological strategies for, during military operations p and skin temperature and sleep in hungarian adolescents p sustained see sleep deprivation tms-evoked potentials waking-specific neurons watch-pat validation p water deprivation and rem sleep p wavelet detection of sleep spindles p wearable electrophysiology sensors , p web-based services apnea complaints in netherlands p quality of life survey of insomnia p self-paid, voluntary cbt for insomnia p weekend effect on sleep duration p weight gain and sleep problems whole body cooling and napping workplace detection of sleepiness in – irregular hours and osa in truckdrivers p napping, normalization of return to, and sleep continuity yawning distribution across hours in infants p yawning, spontaneous, and brain arousal p ykp a/r non-amphetaminic stimulant p zebrafish sleep model arousal threshold/rest homeostasis p pharmacology and adenosine system zif- in sleep deprivation p zinc, serum, in osa p zolpidem , p , p pharmacokinetic profile p zopiclone p zurich sleep registry results p � european sleep research society, jsr (suppl. ), – keyword index an appraisal of the riskneedresponsivity (rnr) model of offender rehabilitation and its application in correctional treatment legal and criminological psychology ( ), , – c© the british psychological society the british psychological society www.wileyonlinelibrary.com an appraisal of the risk–need–responsivity (rnr) model of offender rehabilitation and its application in correctional treatment devon l. l. polaschek∗ school of psychology, victoria university of wellington, new zealand the science of effective offender rehabilitation remains a very young field: dominated theoretically and empirically by the work of a small group of canadian psychologists. their achievements include the ‘what works’ research literature, and the rnr model of offender rehabilitation. first disseminated in , over the following years, the risk, need and responsivity principles became the core of the theoretical framework used in those correctional systems around the world that use science as a basis for offender rehabilitation. this paper evaluates the strengths and weaknesses of the rnr model as a level i rehabilitation framework. it proposes that unrealistic expectations and mistranslations of the model into practice are contributing to concerns about its validity and utility, and stifling needed innovation in the development both of mid-level treatment resources, and of rnr-adherent interventions. it concludes that although the rnr model’s empirical validity and practical utility justify its place as the dominant model, it is not the ‘last word’ on offender rehabilitation; there is much work still to be done. the scientific study of criminal justice interventions has a short history, from which the first publications on ‘the rnr model of offender rehabilitation’ emerged little more than years ago. founded on three core principles of offender classification—risk, need, and responsivity—today the rnr model remains the only empirically validated guide for criminal justice interventions that aim to help offenders to depart from that system. despite the progress made, the rnr model and its growing knowledge base have had limited impact internationally on correctional responses to offenders. the highly emotive and politicized nature of law-and-order issues in our communities can leave little room for the influence of science. instead, ‘truthiness’—judging the validity of ideas by their subjective appeal, without reference to facts, logic, or data (colbert, ) —may prevail. even in nations that both commit criminal justice resources to rehabilitation and that have adopted the model as a matter of policy, the scope and impact of potentially effective interventions is small compared to the systemic resources dedicated to ineffective but ‘true’ approaches, such as increasingly severe and diverse forms of punishment and ∗correspondence should be addressed to devon polaschek, school of psychology, victoria university of wellington, p. o. box , wellington , new zealand (e-mail: devon.polaschek@vuw.ac.nz). doi: . /j. - . . .x devon l. l. polaschek surveillance. this wider punitive context often threatens to swamp the application of this knowledge, along with the efforts of those offenders who strive to desist from crime, and those of the rehabilitative programme workers who support them. implementing knowledge gains—applying what we have learned—despite the forces of ‘truthiness’ is a significant challenge. nevertheless, we know much more than we did about what can work, due in large part to the concerted efforts of canadian psychologists during the s and s. although their work started much earlier (wormith, gendreau, & bonta, in press), at that time, they adopted the new technique of meta-analysis to create a turning point in the scientific understanding of how to reduce re-offending risk (andrews, zinger et al., ). meta-analysis transcended the limitations of narrative reviews, by empir- ically agglomerating superficially disparate programmes and research methodologies, putting them on a common metric: the effect size. for the first time it was possible to use large amounts of information systematically to identify the ‘essential ingredients’ in programmes that worked, and to suggest what was wrong with the many that did not. the ’what works’ research literature had an important role in the development of the rnr model, which was first published in full form in (andrews & bonta, ). however, effect sizes can only take us so far theoretically. andrews and colleagues theoretical ideas and original research were at least as important in shaping the rnr model. andrews began in the s to translate promising crime theories into effective correctional service practices (e.g., andrews, , b). although andrews and colleagues have published numerous papers on the rnr model, its most detailed descriptions are contained in the five editions of their graduate text, the psychology of criminal conduct (andrews & bonta, , , , , a). its strengths as a theoretical framework for offender rehabilitation are substantial; it distils a very large volume of aetiological and intervention-related information into a series of transparently simple principles for application. notwith- standing on-going development since , areas of weakness remain, but perhaps more troubling are some of the ways in which their work has been translated into practice. just as with aetiological theories, the conceptual resources that inform effective programme design vary in their abstractness and complexity, and different levels of models are associated with different purposes and capacities. this paper describes the rnr model, then locates it within a tiered conceptual framework of intervention model development, to guide an appraisal the strengths and weaknesses of the rnr model: what it does well, and what it does not, and—in some cases—cannot do. the paper aims to promote constructive discussion about future developments in the research and practice of offender rehabilitation. what is the rnr model? the rnr model of rehabilitation is a theoretical framework that outlines both the central causes of persistent criminal behaviour, and some broad principles for reducing engagement in crime. the dissemination of the model began in with just the three ‘core’ principles: risk, need, and responsivity (along with a fourth, professional discretion; andrews, bonta, & hoge, ). the full model includes not just the list of principles for effective rehabilitation, later expanded to (andrews, ; andrews, the rnr model of offender rehabilitation: an appraisal bonta, & wormith, ), but also the body of empirical, theoretical, and practical work on which they rest, known as general personality and cognitive social learning (gpcsl ) perspective, and its more specific theory of the central mechanisms of criminal conduct, the personal, interpersonal, and community-reinforcement (pic-r) perspective. the model assumes that (a) intervening to help offenders reduce their involvement in crime benefits them and the community around them, and (b) that the only way to intervene effectively is through compassionate, collaborative, and dignified human service intervention that targets change on factors that predict criminal behaviour, (i.e., it is a risk reduction model). it also assumes that correctional rehabilitation is usually resourced by, and accountable to government; although offenders have the same rights as others do to assistance with all aspects of their functioning (e.g., psychological and physical health), correctional programmes do not have a mandate to address those needs that do not lead to reduced involvement in crime (blanchette & brown, ). the risk principle has two parts. first, at any point in time, people differ from each other in the likelihood of engaging in criminal behaviour, and this likelihood can be predicted from a wide range of factors, including current attributes and previous criminal behaviour. level of risk is important because, all other things being equal, more crime can be prevented by targeting higher rather than lower risk offenders for service. therefore, offenders’ current risk level should be identified prior to making intervention decisions (andrews, bonta et al., ). second, significant reductions for higher risk cases require intensive intervention; brief or narrowly focused programmes have little impact (andrews & bonta, ). the need principle refers to the targets for change. criminogenic needs are dynamic attributes of offenders and their circumstances that, when changed, are followed by changes in recidivism (andrews, bonta et al., ). andrews and bonta use the term ‘need’ in their characteristically pragmatic manner, to refer to ‘problem- atic circumstances’ ( , p. ), or correctional treatment needs (ogloff & davis, ). andrews and bonta ( , ) listed six and later eight broad ‘risk/need’ fac- tors: divided into the ‘big four’ (anti-social attitudes, anti-social associates, anti-social temperament/personality, and a static factor: a history of diverse anti-social behaviour) and the ‘moderate four’: family/marital circumstances, social/work, leisure/recreation, and substance abuse. their presence and ordering is based on meta-analytic results. to assist their translation into treatment targets, andrews and bonta listed ‘promising targets for change’ ( , p. ); later these were aligned with specific criminogenic needs encompassing both offenders themselves (e.g., reduce drug use) and their social contexts (e.g., change the quality of family supervision). the third core principle is responsivity, also described as the ‘how’ of intervention (andrews & bonta, a): designing and delivering services in ways that engage offenders, help them to learn and change. general responsivity refers to general techniques and processes: behavioural and cognitive-behavioural techniques such as teaching skills and reinforcing prosocial behaviour. specific responsivity refers to variations among offenders in the styles and modes of service to which they respond. for example, women offenders may not engage as well with a programme based on men’s preferences and needs. young, physically active men in earlier accounts of the rnr model, the gpcsl is referred to instead as the ‘general personality and social psychology approach’ (gpspa; e.g., andrews & bonta, ). devon l. l. polaschek may learn better from shorter, more interactive sessions. poorly motivated offenders may engage when they understand better how an intervention serves their interests (andrews & bonta, , , , , a). the three core principles are accompanied by ‘overarching principles’, ‘additional clinical principles’, and ‘organizational principles’ (andrews & bonta, a; andrews et al., ). overarching principles include (a) respect for the person and the normative context, (b) basing the programme on empirically validated psychological theory, and (c) the importance and legitimacy of services that prevent crime, even when those services are located outside the criminal justice system. additional clinical principles state that programmes should target multiple criminogenic needs (breadth), should assess strengths, both for risk prediction and responsivity, use structured assessments of risk, and use professional discretion occasionally on well-reasoned and well-documented grounds. organizational principles recognize intervention contexts and needed resources. they state that community-based interventions are preferable, that staff practice both the relationship and structuring principles with offenders, and that management must provide, develop, and support the staff and other resources needed (andrews & bonta, a). none of these additional principles is new; they draw out and state explicitly material that was present but less accessible in their earlier writing. the principles derive both from empirical research and from their personal, inter- personal, and community reinforcement (pic-r) perspective. the pic-r is described as a specific theory derived from a ‘general personality and cognitive social learning’ (gpcsl) perspective to understanding criminal conduct (andrews & bonta, , , , , a). the pic-r began around (andrews, a) as an ambitious attempt at theory knitting (ward, polaschek, & beech, ), integrating promising aspects of diverse sociological and psychological aetiological theories and research on crime, and distilling their contributions down to the level of the individual. the primary source theory at the individual level is social learning theory; crucial roles are accorded to cognition and modelling and observational learning (andrews & bonta, , , , , a). although the fifth edition of the psychology of criminal conduct (andrews & bonta, a) is more than twice the length of the first (andrews & bonta, ), the foundations of the approach remain unchanged. over successive editions, andrews and bonta continued to elaborate, and contextualize their model, and to evaluate its empirical accuracy, based on steady growth in relevant research. the supporting material on each rnr principle, and the pic-r is extended, incorporating disparate theoretical and empirical advances in criminological psychology and other relevant domains (e.g., clinical, neuro-social, and personality psychology). the other notable change over time is an increase in the clarity and accessibility of presentation; language is less technical, there is more elaboration of basic concepts, technical aspects of research findings are set beside the main text or in appendices, rather than embedded, and the principles themselves are described in more detail. the potential impact of such apparently superficial changes is substantial for a framework that will be applied to real-world issues; promoting a more complete understanding of the model. some of these changes represent responses to critiques that have encouraged the authors to pull aspects of the model more clearly into the foreground. for example, the term ‘strengths’ is now featured in the principles themselves, more emphasis is given to resistance and motivation, and there are more explicit statements on attention to non-criminogenic needs. the rnr model of offender rehabilitation: an appraisal contextualizing the rnr model as a rehabilitation framework theories and models are developed to serve particular purposes. they vary on di- mensions that are unrelated to their content domain, such as detail, complexity, and abstractness. no theory—no matter how well crafted—can be all things to all people. theory evaluation should be conducted with reference to the intended type or level of theory proposed, because different levels of theories inevitably tend to have particular types of strengths and weaknesses. integrated and systematic theory building in the criminal justice system—especially intervention theory—remains neglected. some years ago, ward and hudson ( ) recognized a similar problem with aetiological theories informing sex offender treatment, and organized them into three tiers, differing in level of abstraction and compre- hensiveness. this proposed structure—known as the ‘meta-theoretical framework’— when applied to correctional rehabilitation theories similarly enhances understanding of current theories and gaps, identifying high-priority areas for future development (polaschek, ). this adapted ‘rehabilitation meta-theoretical framework’ is also valuable here. locat- ing the rnr model within the tiered framework provides clearer expectations about how to judge its quality relative to the intended purpose and inherent strengths and weaknesses of theories of that type. in ward and hudson’s ( ) meta-theoretical framework, theories in the top tier— level i—are global and multi- factorial. they leave unspecified important details about the inner workings of the phenomenon they seek to explain. level ii theories instead deal with a single aetiological factor: specifying mechanisms, and describing how the factor interacts with other factors. finally, level iii theories are local theories of the offence process itself (ward & hudson, ). in the proposed adaptation for intervention theories, level i multifactorial reha- bilitation theories are also global, necessarily broad in focus and lacking sufficient detail to directly shape the design of specific interventions. they are hybrids (ward, melser, & yates, ): informed partly by aetiological theories, but also incorporating the underlying values and assumptions of intervention, therapy strategies, change processes, programme context and setting, and implementation issues, all in an abstract, ‘high level’, way. their main purpose is to provide general parameters, in which rehabilitative endeavours will operate, and to support developments on the other two levels (polaschek, ). turning next to the bottom, most specific, level of conceptual development: at level iii reside intervention theories for specific programmes. they describe the programme, its processes and content, therapist characteristics, intended client group, expected changes, and so on. they explain their characteristics with reference to level ii and level i theory. in the original meta-theoretical framework (ward & hudson, ), a descriptive theory of the offence process is an impoverished one if it draws only on multivariate aetiological theories of sexual offending. similarly, the breadth and abstractness of level i theories makes them unsuited to informing level iii—specific interventions— either for therapists working individually with offenders, or for expert teams of programme designers. level ii contains the conceptual guides representing broad intervention approaches under the umbrella of a level i rehabilitation theory. these resources may vary by offender characteristics (e.g., level of criminal risk, gender and age, psychopathy, devon l. l. polaschek criminal gang members) or by the presence of particular needs (e.g., alcohol and drugs) or a focus on change in particular domains (e.g., cognitive skills, vocational skills, reintegration planning, and implementation) or particular settings (court-based, correctional, hospital). clearly, just as level i rehabilitation theories are hybrids rather than true theories, these are also not theories in the conventional sense, but again comprise elements of theory, research, and practice resources, but at an intermediate level of abstractness and detail. what do level ii intervention resources look like? some concrete models are available for the treatment of sexual offending: they outline how to rehabilitate sexual offenders across a range of risk levels and settings. for example, marshall, marshall, serran, & o’brien ( ) draw together resources from research, decades of evolving programme practice, and new theoretical developments in positive psychology. they outline a level ii theory: a general approach to ‘strength-based’ sexual offender rehabilitation, and include several level iii derivatives. finally, ward and hudson ( ) distinguished between level i theories and ‘theoretical frameworks’. the latter are less well developed and their main function is ‘to help organise research by providing a loose set of constructs with which to approach empirical problems’ (ward & hudson, , p. ). at this point in its development, the rnr model is best thought of not as a fully fledged level i multivariate rehabilitation theory, but as a framework (ward et al., ). it is not fully developed yet. model appraisal criteria typically, explanatory or aetiological theories are evaluated against a series of criteria that includes empirical validity (retrospective and direct prospective tests), scope, discriminability, generalizability, internal and external consistency, ability to unify existing theories, simplicity, falsifiability, research and practical fertility, explanatory depth, and even originality, creativity or excitement (sternberg, ; ward et al., ). although values other than empirical standing are important in evaluating theory quality (see ward et al., ), empirical validity and practical application have primacy when evaluating intervention theories (gendreau, smith, & french, ; ogloff & davis, ). this stronger—though not exclusive—emphasis on whether theories or models can prove themselves against both existing evidence, and new data—especially data from the model’s application—is justifiable for two reasons. first, the criteria listed above apply to more conventional psychological theories. rehabilitation theories are not aetiological or explanatory theories in the usual sense, but hybrids that bring together theoretical and other resources needed for treatment (ward et al., ). second, their main purpose is application, rather than knowledge generation for its own sake. so arguably, although conceptual criteria are important, they become irrelevant if empirical evidence does not support the model, or it cannot be adequately implemented in the intended practice setting. the practical consequences of using such a theory may be serious. strengths constructed as it was from existing theory and data, the rnr model has strong unifying power and external consistency. the gpspca/pic-r drew on an embarrassment of the rnr model of offender rehabilitation: an appraisal riches: even finding merit in freudian theory, a notable inclusion for committed behaviourists (wormith, ). it has significant explanatory depth in several important respects. for example, it can explain why programmes as diverse as boot camps, pet therapy, and anger management programmes do or do not work in reducing recidivism, and why programmes’ ‘labels’ do not reliably signal their potential. for example, intensive supervision programmes (isps)—punitive community supervision regimes—are usually ineffective, but an isp in- corporating features of the rnr model can reduce recidivism (see paparozzi & gendreau, ). other examples include its ability to explain why a positive relationship between staff and offenders is a necessary but not sufficient condition for effective outcomes (i.e., the relationship and structuring principles) and to pinpoint retrospectively potential sources of loss of programme effect when demonstration programmes are implemented more widely (see examples in andrews & bonta, a). importantly, they sought to demonstrate how factors from multiple levels of influence, including the political, societal, and neighbourhood, can be seen in people’s behaviour, through translation into social learning principles. thus, they circumvented a big weakness of social-level aetiological theories: explaining why some individuals are more affected by these factors than others in apparently similar environments. with elegant simplicity, these cognitive–behavioural principles also unify the aetiological with the intervention aspects of the model. turning now to empirical validity, it is difficult to fault the rnr model on its consistency with pre-existing empirical data. newer research has fleshed out but not falsified any major aspects of the model; the abstractness of level i theories often renders them difficult to falsify. direct prospective tests of the model, have been based on (a) the core rnr principles (andrews & bonta’s meta-analysis, and independent research, e.g., hanson, bourgon, helmus, & hodgson, ; lowenkamp, latessa, & smith, ), and (b) the model itself, using the correctional programme assessment inventory (cpai; see andrews, ; goggin & gendreau, ). this research continues to find that programmes’ ability to reduce criminal offending is related to the extent to which design and implementation conform to the rnr model. the fertility and practical utility of a rehabilitation theory is demonstrated in new research and new applications. the fertility of the rnr model is also significant. others have used it to understand the effects of diverse types of programmes: including prisoner re-entry (listwan, cullen, & latessa, ), supervision (pearson, mcdougall, kanaan, bowles, & torgerson, ; taxman, ), family interventions (dowden, & andrews, ), and isps (lowenkamp, flores, holsinger, makarios, & latessa, ). it has inspired new assessment tools and approaches (coebergh, bakker, anstiss, maynard, & percy, ; gordon & wong, ; latessa, lemke, makarios, smith, & lowenkamp, ; ware & coebergh, ), and new tools for assessing programme quality (e.g., the cpai, see goggin & gendreau, ). it has found its way into the development of programme accreditation systems (e.g., bowen, ; hanson, ; lipton, thornton, mcguire, porporino, & hollin, ; lösel, ). it is credited with inspiring a flurry of intervention design; in the last decade or so, several criminal justice systems (e.g., new zealand, the uk) moved to widespread adoption of assessments and development of programmes based on andrews and bonta’s work. encouragingly, there has been a steady range of research and practice publications on the least well-understood principle of responsivity, on staff behaviour and treatment process (e.g., beyko & wong, ; dowden & andrews, ; hubbard & pealer, ; mcmurran, ). all in all, the rnr model has made an original substantive devon l. l. polaschek contribution to criminal justice assessment, intervention, research, programme accred- itation, and programme integrity. weaknesses the pcc is the only detailed source of information about the rnr model; article summaries often only touch on the three core principles; at best, they discuss very briefly the underlying theory. however, the volume and complexity of material in the pcc makes familiarizing oneself with the full model and its underpinnings a committing task. although the principles are succinct (wormith et al., in press), in its totality, the overall framework lacks simplicity or parsimony. in the early editions of the pcc, this complexity led to confusion, especially with respect to the relationships between different aspects of the model (e.g., the gpspa, the pic-r, and the rnr principles;(ward & maruna, ). the ward et al. ( ) reformulation demonstrated that this problem could be partially remediated. later editions of the pcc have made some improvements, expanding the listing of key principles (see also andrews et al., ), and presenting the core messages in diverse and interesting ways that serve to clarify the authors’ views. the model’s explanatory depth is limited in several key areas. for example, despite its centrality to the model, the responsivity principle is the least developed of the three core principles (andrews & bonta, ; see dowden & andrews, , for an exception). it is theoretically unsophisticated: a catch-all category. yet, it contains much of what makes the application of the model both humane and effective, so its underdevelopment may have important consequences (ogloff & davis, ). for example, it is still unclear why demographic variables such as gender and ethnicity are important, and there remains limited detail about offender motivation and engagement in treatment, despite decade-long level ii developments in motivational interventions (mcmurran, ) and more recently in treatment readiness (day, casey, ward, howells, & vess, ). one of the most useful aspects of critiques from strength- emphasizing perspectives is in reminding us of the importance of giving offenders reasons to want to engage in desistance and change (e.g., porporino, ; ward & maruna, ), not just the capacities to do so. developing responsivity theoretically could go some way to reduce the impression one can get from the rnr model, that ‘simple operant conditioning’ provides an inherently unsatisfying explanation for how treatment works, and that effective rnr treatment is only concerned with the external manipulation of contingencies for behaviour (ward, yates, & willis, in press). another important limitation on explanatory depth, and so a priority for future development is the conceptual gap that exists between an identified list of high- priority dynamic risk factors or targets for change—the central eight—and the theoretical resources needed to translate these factors into intervention design, individual clinical formulations, treatment plans, and change monitoring (porporino, ). the central eight are empirically well established as correlates both of criminal propensity, and of programmes that reduce re-offending. but each is a proxy, or placeholder for a series of phenomena that mann, hanson, and thornton ( ) recently labelled ‘psychologically meaningful risk factors’; factors that potentially have an actual causal role in on-going involvement in criminal behaviour. a list of broad categories of treatment targets cannot and is not meant to substitute for an adequate understanding of (a) the central mechanisms driving current criminal propensity, and therefore (b) how the rnr model of offender rehabilitation: an appraisal different risk factors are related to each other, and further (c) how change processes work on these mechanisms for different offenders (ward & maruna, ). but rather than expecting a level i framework—abstract and lacking in detail as it is—to bridge on its own these explanatory gaps, we should instead promote the development at level ii both of single-factor aetiological theories and intervention theories. our scientific understanding both of treatment targets and treatment change processes remains unsophisticated, and that lack of sophistication must inevitably be imported into level i theories. translation issues the extent to which theorists themselves should be held responsible for others misunderstanding or misapplying their work is no doubt a matter for debate. regardless of how clearly or carefully a theory is presented, there is always potential for important aspects of it to be ‘lost in translation’. this final section of the critique considers some areas of concern that rather than being inherent limitations of the model itself, may instead be difficulties with knowledge transfer. andrews et al. ( ) acknowledge that a lack of clarity and comprehensibility may have contributed to some of the criticisms levelled at their model, and further, that the style of presentation may even have lacked charisma or attractiveness (andrews & bonta, a). experience in teaching with the pcc text since its first edition suggests that they are correct. both the detached and formal academic writing style and some of the terminology (e.g., ‘clinically appropriate human service’; andrews & bonta, , p. ; and ‘the magnitude of the effect of any one signaled reward for any class of behaviors depends upon the signaled density of other rewards for that class of behaviors’ (andrews & bonta, , p. ) telegraph to students that the roots of this model precede the birth of their parents. though undoubtedly technically correct, both style and terminology may discourage today’s students of correctional psychology from reading the pcc thoroughly. instead they may focus more on summaries of the model (e.g., andrews & bonta, b; bonta & andrews, ), including those of other commentators, which are, by definition, social constructions that may be prone to disadvantageous reductionism (cullen, in press). if the next generation of therapists and policy makers do not fully understand, or cannot even bring themselves to fully read the relevant material, then their appraisals of it will be superficial or inaccurate, leading to problems with translation into practice. although really good books should not be judged by their covers, research shows that they are. simpler, clearer, and more accessible language serves to reduce misunderstandings, and has other important practical implications: readers are likely to like the model more and view it as easier to use (song & schwarz, , ). ward and colleagues have provided the most systematic and thought-provoking critiques of the rnr model. their critiques include a number of points they suggest may be better thought of as problems with implementation ( ward et al., ; ward & maruna, ). several of their observations point to failures to implement core tenets of the rnr model. for example, ward and maruna ( ) suggest that in their experience, programmes derived from the rnr model primarily are conducted for the benefit not of the offender, but of the community at large. relatedly, these programmes do not motivate or engage offenders since they do not build or promote valuable positive skills and capacities. further, they cannot support offenders’ interests in desisting from crime and hamper devon l. l. polaschek the development of a good therapeutic alliance. lastly, in these programmes, offenders’ treatment goals are primarily avoidant, because the overall goal of intervention is to reduce re-offending (ward & maruna, ). no doubt such programmes exist. it is hard to imagine, however, that they could be effective in reducing recidivism; they differ in important ways from both the letter and the spirit of the rnr model. considering these points in turn, first, rnr programmes are conducted for the benefit of the offender and the community; throughout the pcc, andrews and bonta refer to the benefits of human service (i.e., rehabilitative) interventions for the offender (e.g., , p. ). the underlying assumption of the rnr model—and the rehabilitative ethos from which it emerged—is that it benefits both offenders and society to get offenders away from the criminal justice system and into pro-social community life, and rnr rehabilitation is about assisting them in ways that will achieve that goal (see also bonta & andrews, ). typical rnr programmes, even those for the highest risk offenders devote the majority of treatment time to helping prisoners learn skills that we would all find helpful: mood regulation, behavioural regulation, distress tolerance, problem solving, communication skills, and so on (cortoni, nunes, & latendresse, ; polaschek, ; polaschek & dixon, ; wong, gordon, & gu, ). programme environments often also include vocational skills and education components, assistance in reconnecting with families, as well as practical assistance with preparing for community re-entry. do offenders have other important yet non-criminogenic needs, and would they benefit from other forms of assistance? without doubt, but the presence of other needs does not make risk-related needs unimportant (ward et al., in press): and their amelioration of no benefit to the offender. rnr programmes are fundamentally capacity building: the most effective way to address criminogenic needs is by shaping the development of and differentially rewarding the adoption of positive capacities. this idea goes back at least to early behaviourism (miltenberger, ), and in the rnr model, is incorporated into the core process of ‘building up rewards for non-criminal alternatives’ (andrews et al., , p. ). for example, andrews and bonta ( , p. ) noted that promising targets for change include ‘promoting family affection and communication’; ‘replacing the skills of lying, stealing, and aggression with more prosocial alternatives’; ‘promoting identifi- cation/association with anticriminal role models’; and making non-criminal activities in familial, academic, vocational, recreational, and other behavioural settings more rewarding than criminal activities, so that offenders will prefer them. these examples (see also andrews & bonta, , pp. – ) show too that it is not correct that rnr- based interventions primarily set avoidant treatment goals with offenders. yes, the overall policy goal—the ultimate goal—of correctional interventions is avoidant: reducing re- offending (blanchette & brown, ), but this ultimate goal of risk reduction is best achieved through some combination of avoidant and approach goals for offenders. ward and colleagues (ward et al., ; ward & maruna, ) drew attention to these areas of confusion in the context of proposing the good lives model (glm). there are important differences between the rnr model and the glm, and encouragingly, theoretically, however, rnr-adhering programmes only develop capacities that either increase responsivity, or reduce criminogenic needs, or both. this is one important point of difference with the good lives model, which instead seeks to develop a wider range of capacities, linked to primary goods (ward et al., in press). the rnr model of offender rehabilitation: an appraisal these differences are becoming clearer as the authors of each model respond to each others’ comparisons of the two (e.g., ward et al., in press; wormith et al., in press). however, observations such as those above suggest that some differences between the two models that seem substantive on paper, evaporate, or at most, become differences in emphasis when the models are applied (blanchette & brown, ; cullen, in press). the basis for these misunderstandings seems to be omissions from the rnr model’s description that occurred because the model was first developed contemporaneously with an evolving correctional rehabilitation ethos that made these points self-evident to those involved at the time. a good working alliance between therapist or correctional worker and offender is also a founding assumption of the rnr model. it is implicit in the responsivity principle, but explicitly embodied in the relationship and structuring principles: in human service interventions, workers collaborate with offenders (andrews et al., ) and they are warm, empathic, and flexible (andrews & bonta, ). in fact, andrews was one of the first correctional researchers to investigate the importance of high-quality relationships between human service workers and offenders in effective interventions; demonstrating that when probation officers are warm and empathic, actively challenge anti-social thinking, and actively reward pro-social thinking, very substantial reductions in recidivism can be achieved (andrews, ; see also andrews, b; andrews & kiessling, ). a second source of difficulties with knowledge transfer can be traced to inferences made about the model based not in the published literature, but on observations of interventions intending to operationalize it. the principles of the rnr model derive in part from the ‘what works’ meta-analyses, in turn based on diverse programme types. by contrast, over the last decade or so, adoption of evidence-based rehabilitation policies has led to a series of large ‘rollouts’ of rnr-based programme suites in countries such as the uk, canada, and new zealand, that primarily translate rnr into one style of intervention: structured, cognitive-behavioural closed-group based treatment programmes (porporino, ). these programmes may vary in their target population, and in intensity and setting, but fundamentally they represent at best, only one version of the diversity that is possible within the rnr ambit. more concerning, programmes subject to large-scale implementation encounter many challenges, especially with regard to treatment integrity (goggin & gendreau, ), leading these programmes, and the policies that surround them to be highly structured and manualized. but, effective treatment requires a focus not just on good content and technique. effective relationship skills and treatment process are necessary to achieve treatment goals. the former can be specified in a written manual but the latter is much more difficult to manualize (marshall, ) and may be compromised by efforts to achieve the former. highly specified content has been used to (a) enable inexperienced, or even undertrained programme staff to deliver treatment simply by ‘reading aloud’ (mann, ), (b) facilitate accreditation processes that tend to evaluate programmes primarily from written documentation (maguire, grubin, lösel, & raynor, ; marshall, ), and (c) enable a simplistic approach to monitoring treatment integrity (i.e., by checking off presented content against manual content; polaschek, ). the use of overly scripted content-focused manuals cannot make up for a lack of well-trained and constructively supervised therapy staff, but does constrict application of the responsivity principle. therapists cannot adequately tailor the treatment to the client, cannot respond to obvious crises as naturally occurring ‘teachable moments’, appear unempathic and inflexible, rightly leading to ‘cookie cutter’ criticisms (ward et al., ). adherence to devon l. l. polaschek the responsivity principle requires intervention ‘guides’ rather than manuals (marshall et al., ), well-trained and experienced staff, and practice supervisors who are sufficiently well informed and skilled to monitor integrity—and enhance practice— by evaluating whether goals were achieved rather than whether treatment content that demonstrates only one method of achieving those goals was presented (polaschek, ). group-format programmes are not necessarily one-size-fits-all (kirsch & becker, ). they can be responsive to individual offenders’ needs, but only if therapists can use rnr-adherent therapy process and content together to do so. the lack of effectiveness of some of these widespread roll-outs, by comparison with the demonstration programmes, on which they were based, may be a result of problems with implementation integrity, but they also reflect a failure to adhere to the core rnr principle of specific responsivity. this problem—of omitting or compromising the responsivity principle—has been explicit in some importations of the rnr model (e.g., kemshall, ). goggin and gendreau ( ) found that very few ‘real world’ programmes meet criteria for all three core principles. although the responsivity principle is the least developed of the three core principles, it does not follow that it is the least important, but perhaps instead that it is the hardest to implement. conclusions and future directions the rnr model of rehabilitation seems set to remain the ‘premier rehabilitation theory’ (ward et al., , p. ) as long as it continues to enjoy strong empirical support, and as long as scientific data are held in higher esteem than ‘truthiness’. the achievements of the rnr model are quite remarkable: developing and promoting from the quagmire of quackery, confusion, and contradictory findings that preceded ‘what works’ (latessa, cullen, & gendreau, ) a deceptively simple series of principles to guide offender rehabilitation. yet this appraisal has noted (a) difficulties with complexity, accessibility of language, and clarity in the model itself, (b) large-scale operationalization of a narrow range of rnr programmes, and (c) implementation of interventions that emphasize the core principles of risk and need at the expense of other, equally important principles such as responsivity and core staff practices. together, these factors may foster a sense of disenchantment with, and misunderstanding about, the model and its value. however well supported it is empirically, future developments should be directed at improving both the model and its application. the dearth of level ii resources to fill gaps between model and practice also contributes to frustrations that are instead levelled at the rnr model itself. the model’s authors themselves addressed this gap in two important practice arenas: the assessment of offenders (the lsi–r & ls/cmi; andrews & bonta, ; andrews, bonta, & wormith, ) and the assessment of programme design and delivery (e.g., the correctional program assessment inventory [cpai- ]; gendreau & andrews, ). however, in contrast to some other proponents of rehabilitation theories (e.g., yates, prescott, & ward, ), the translation of the model into actual intervention programmes or level ii intervention approaches (e.g., mid-level treatment guides), largely has been left to others, and still remains, mostly, to be done. the development and dissemination of more of these types of rehabilitation resources should be an urgent priority for the field. where, for example, are the resources for guiding the treatment of pcl-psychopaths or moderate-risk offenders with major the rnr model of offender rehabilitation: an appraisal drug and alcohol addictions, mentally disordered offenders, violent offenders? without them, therapists or programme designers are faced with constructing for themselves a level ii theory to inform their desired intervention. this is not a realistic or feasible expectation—even for very capable therapists—and may explain in part why some choose ineffective interventions to deliver. their absence may be leading too to overly narrow and reductionist interpretations of the rnr model such as those embodied in some highly structured, cognitive-behavioural closed-group treatment programmes (marshall et al., ). many variations in intervention type are consistent with the rnr model. empirically bounded innovation is much needed, given the untapped potential for improvements in intervention effect sizes. for example, innovative ‘through-care’ models that challenge different parts of the system to work better together may have far more impact than long periods of intensive custodial psychological treatment with little effective aftercare (porporino, ). such models might follow a shorter period of intensive psychological treatment with related supervisory oversight (bonta et al., ; bonta, rugge, scott, bourgon, & yessine, ) and reintegration assistance, all guided by rnr principles. correctional environments are often hostile at multiple levels to endeavours to assist offenders; translating well-designed programmes into routine practice that reaches more than a handful of offenders poses significant challenges (bourgon, bonta, rugge, scott, & yessine, ). although successful rnr-adhering demonstration programmes are now quite numerous, the failure of some recent large-scale interventions may create pressure to return to ‘smarter’ punitive regimes. it may be all too easy to ‘forget that corrections is littered with interventions—from the penitentiary to boot camps—that were “creative” but proved to be examples of quackery’ (cullen, in press, pp. – ). on-going conceptual debate between proponents and critics of the rnr model will no doubt result in further improvements to the model itself; conceptual improvements in high-level theories are certainly important. but the more significant challenges remain in actually implementing programmes in such unforgiving settings. greater benefits for offenders may instead come more from working with correctional workers, managers, and policy makers to develop better models for applying in practice with offenders what we already have learned about ‘what works’. the rnr model is not the ‘last word’ on offender rehabilitation (wormith et al., in press). it is at its best as an umbrella framework, specifying basic conditions that should be met across diverse types of intervention. future programmes may be able to adhere to more of the principles, and in increasingly effective ways, as mid-level theorists and programme developers trial ideas from newer theories, and developments in other intervention domains, to flesh out better ways of doing so. references andrews, d. a. 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( ). applying the good lives and self-regulation models to sex offender treatment: a practical guide for clinicians. brandon, vt: safer society press. received november 	what is the rnr model? 	contextualizing the rnr model as a rehabilitation framework 	model appraisal criteria 	conclusions and future directions 	references the influence of forest activities in a university campus forest on student’s psychological effects international journal of environmental research and public health article the influence of forest activities in a university campus forest on student’s psychological effects jin gun kim , jinyoung jeon and won sop shin ,* ���������� ������� citation: kim, j.g.; jeon, j.; shin, w.s. the influence of forest activities in a university campus forest on student’s psychological effects. int. j. environ. res. public health , , . https://doi.org/ . / ijerph academic editor: paul tchounwou received: january accepted: february published: march publisher’s note: mdpi stays neutral with regard to jurisdictional claims in published maps and institutional affil- iations. copyright: © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (https:// creativecommons.org/licenses/by/ . /). graduated department of forest therapy, chungbuk national university, cheongju , korea; jingun @naver.com (j.g.k.); forest-bb@naver.com (j.j.) department of forest sciences, chungbuk national university, cheongju , korea * correspondence: shinwon@chungbuk.ac.kr; tel.: + - - - abstract: this study aimed to examine the psychological effects of forest activities in a campus forest. a pre-test and post-test control group design was employed to evaluate the psychological effect of forest activities in a campus forest. a total of participants participated in this study ( in the forest activities group; in the control group). the profile of mood state (poms) questionnaire, the concise measure of subjective well-being (comoswb), and the modified form of the stress response inventory (sri-mf) were administered to each participant to assess psychological effects. this study revealed that participants in the forest activities intervention group had significantly positive increases in their mood, stress response, and subjective well-being, comparing with those of control group participants who did not partake in any forest activities. in conclusion, the implementation of forest activities in a campus forest is an efficient strategy to provide psychological well-being benefits to college students. keywords: forest therapy; campus forest; profile of mood state; subjective well-being . introduction the world has become an urban society, with many populations becoming alienated from the traditional people–nature relationship. according to the world health organiza- tion [ ], more than half of the world’s population lived in urban environments in , and this will increase to % by . urbanization, defined as the increase in the number of cities and urban population, is a demographic movement and includes social, economic, and psychological changes that constitute the demographic movement. it is a process that leads to the growth of cities due to industrialization and economic development [ ]. urbanization provides us with many opportunities, such as rapid economic growth, but overexposure to stress causes mental health problems [ , ]. namely, urbanization affects mental health by increasing stressors and factors such as overcrowding and polluted environment, high levels of violence, and reduced social support [ ]. in such a situation, mental health is an increasingly urgent public health problem, highlighted by an increase in mental illness such as depression and anxiety [ , ]. this men- tal health crisis is a particular concern on college campuses. students encounter stressors, including academic and extracurricular demands, relationships, financial concerns, familial expectations, identity development, and racial and cultural differences. in recent years, there has been an increase in reported symptoms of mental health in college student popu- lations. according to the national college health assessment [ ], % of students felt overwhelmed in the past months by all the work they had to do. in addition, % of students reported feeling overwhelming anxiety, and % of students felt very sad and, % of the students suffered from depression. gallager [ ] and mackean [ ] reported that college students had increased mental health problems such as depression, anxiety, suicidal thoughts, and other chronic psychiatric disorders compared to the general population. research suggests that students have mental problems due to the pressure of academics, int. j. environ. res. public health , , . https://doi.org/ . /ijerph https://www.mdpi.com/journal/ijerph https://www.mdpi.com/journal/ijerph https://www.mdpi.com https://orcid.org/ - - - https://orcid.org/ - - - https://doi.org/ . /ijerph https://doi.org/ . /ijerph https://creativecommons.org/ https://creativecommons.org/licenses/by/ . / https://creativecommons.org/licenses/by/ . / https://doi.org/ . /ijerph https://www.mdpi.com/journal/ijerph https://www.mdpi.com/ - / / / ?type=check_update&version= int. j. environ. res. public health , , of taking exams, transitioning into college life [ ], relationship problems with a peers and romantic partners [ ], financial concerns, and familial expectations [ ]. hence, mental health issues among college students can negatively affect academic performance [ , ], relationship dysfunction [ ], a high rate of drinking [ , ] and substance abuse [ , ], and increased incidence of suicide [ ]. therefore, it is important to employ effective interventions for coping with a college student’s mental health problems. the use of forests and forest therapy is increasingly recognized as an effective in- tervention for dealing with physical and psychological problems [ , ]. many studies demonstrated that using forests helps to reduce stress and enhance physiological relax- ation [ – ]. for instance, forest activities, such as walking through a forest or viewing the landscape, can also increase parasympathetic nervous activity [ – ], suppress sym- pathetic nervous activity [ , ], reduce the cortisol concentration [ , ], pulse rate, and blood pressure [ , ], and improve the immune system [ – ]. park et al. [ ] reported that the forest walking group demonstrated reduced cortisol levels, blood pressure, heart rate, and sympathetic nervous activity and improved parasympathetic nervous activity compared to the city walking group. studies by li et al. [ ] investigated the impact of forest trips on natural killer (nk) cell activity for two nights and three days on men with weakened immune function. the results demonstrate that forest activities improve weakened immune function. a further study conducted on women also reported that weakened nk cell activity positively affected male and female participants [ ]. in addition, increased nk cell activity was maintained for one week for both men and women, and in the case of men, the long-term effect of forest healing was revealed through the results, in that it was maintained until month later [ ]. in addition, regarding psychological relaxation aspects, the effects of forest therapy were associated with improved mood state [ , ], self-esteem [ , ], and quality of life [ , ], decreased psychological stress [ , ], depression and anxiety [ – ]. for example, kaplan and kaplan [ ] argued that individual mental fatigue could be restored through contact with the natural environment, such as the forest. ulrich et al. [ ] demon- strated that natural scenery, such as forests, relieves psychological stress. shin et al. [ ] assessed the impact of forest environment on individual psychological health and well- being and the forest experience contribution to emotional and cognitive health promotion. regarding the more direct impact of natural environments, such as forests, pretty et al. [ ] reported that participants’ mood and self-esteem improved significantly after forest ex- ercise. park et al. [ ] showed that walking through a forest reduces negative emotions such as tension, anxiety, depression, anger, fatigue, and improves positive emotions such as vigor. in a similar study, morita et al. [ ] reported that staying and walking in the forest reduces hostility and depression and increases vigor, and further study showed that walking in the forest improves the amount of sleep and reduces the anxiety of partici- pants [ ]. to further clarify the psychological effects of forests, song et al. [ ] divided college students into groups to walk through the forest and urban environment. the results show that participants who walked in the forest environment experienced decreased negative emotions such as depression, tension, anger, fatigue, and confusion and increased positive emotions such as vigor, compared with participants who walked in the city environment, and participants with high anxiety experienced a greater effect from the forest in improving depression than those with general or low anxiety. many studies demonstrated that exposure to nature, such as forests, improves cogni- tive tasks that require direct attention. for example, tennessen and cimprich [ ] showed that the student who can see the natural environment through dormitory windows per- formed better in tasks requiring concentration than those who did not. taylor et al. [ ] also reported that children who could see urban forests near their apartments performed better in tasks relating to memory, impulse control, selective attention, and concentration than those who did not. similarly, it has been shown that walking in the natural environment, such as forests, provides advantages in language work memory and cognitive control compared with walking in an urban environment [ – ]. int. j. environ. res. public health , , of however, due to the busy college life of students, interaction with forests far away from cities is limited. therefore, we need to utilize the campus forest to improve students’ quality of life. campus forests are forests in the university campus space [ ]. campus forests are considered meaningful places for experiencing everyday life, with the poten- tial to support healthy campus planning [ , ]. campus forests are pre-existing, easily accessible, and effective resources for health [ ]. students who spend most of their time on campus walk by and through these spaces daily. therefore, it could be a good idea to use campus forests to manage university students’ mental health. campus forests have recently been placed on the list of important urban green spaces, drawing more attention to them than in the past [ , ]. campus forests can connect green networks in the inner city and contribute to forming a community with residents. on university campuses, green space is desirable, and represents a precious amenity to help recruit and retain students, promote student loyalty and pride, attract donors, and improve campus quality of life [ ]. some studies suggest the use of campus forests to help college students. tudorie et al. [ ] reported that a campus forest provides a place to relax, meet friends, and pass through. it also has a high potential to provide cultural, provisioning, and regulation landscape services. the content and greenness of the view from indoors on campus can improve indoor settings’ perceived restorativeness [ ]. campus forests also can improve the quality of life and mental health benefits for college students. for example, mcfarland et al. [ ] showed that college students’ use of campus forests is associated with their quality of life. hipp et al. [ ] also reported that college students who have higher levels of greenness on-campus show a higher quality of life. in addition, bang et al. [ ] also reported that a campus forest walking program significantly increased health-promoting behaviors and parasympathetic nerve activity and decreased depression. using voluntary college students, ibes et al. [ ] investigated the psychological impact of green micro-breaks on stress reduction. this study revealed that green micro-break interventions provided a significant psychological impact—most commonly, relief from stress. therefore, utilizing campus forests may serve as an effective strategy to help students to alleviate mental health problems. even though a few studies positively evaluated campus forests for alleviating mental health problems, there is still a lack of research in this area. more research evidence is also needed on the health benefits of the use of campus forests. therefore, this study aimed to investigate whether students’ forest activities influenced their psychological states. the following research hypotheses were formulated and tested in the study: ( ) campus forest activities will have a positive effect on mood (on the poms: the profile of mood state scale); ( ) campus forest activities will have a positive effect on stress response (on the modified form of the stress response inventory: sri-mf scale); ( ) campus forest activities will have a positive effect on happiness (on the comoswb: concise measure of subjective well-being scale). . materials and methods . . participants thirty-eight university students (mean age, . ± . years) were recruited for the field experiment. the distribution of participants was males (mean age, . ± . years; . %) and females (mean age, . ± . years; . %). recruitment posters were posted throughout the university buildings to recruit volunteers. no incentive was provided to the volunteers. the inclusion criteria required the participants to be current students at the specified university. participants who met the following inclusion and exclusion criteria were considered for study: ( ) no diagnosis of a reaction to severe stress and/or depression; ( ) did not suffer from drug or alcohol abuse. the participants were randomly distributed into two groups (i.e., in the campus forest activities group and in the control group). the details of participants’ characteristics are shown in table . int. j. environ. res. public health , , of table . instructions given to the two groups of participants during the study period. group direct request activity group read and follow the instructions on the guide signs for each activity installed on the course. do individual activities, not group activities, when performing forest activities keep normal life during the experiment avoid alcohol and tobacco during the experiment do forest activities regularly (at least once a week) control group keep normal life during the experiment avoid alcohol and tobacco during the experiment the experiment was conducted during the nd semester of (september–november). a total of eight sessions of forest activities were performed. before starting the experiments, we explained the study’s purpose and procedures and obtained their written informed consent. the institutional review board of chungbuk national university (irb number: cbnu- -sb- - ) approved this study. . . experimental site the field experiment site was conducted in the chungbuk national university cam- pus forest in korea. the size of campus forest is about , m , covered mainly by metasequoia glyptostroboides (dbh cm; tree height – m; . ha), chamaecyparis pisifera (dbh cm; tree height – m; . ha), and mixed forest species (pitch pine, oak, chestnut, oriental cherry; . ha), and the stand age ranged between and years old. the study area was a suitable place for conducting forest activities in terms of accessibility, distribution of a variety of vegetation, and gentle slope. during the eight sessions in the experiment, the weather was pleasant and not raining, with a mean temperature of . ± . ◦c. . . procedure the study employed a pretest-posttest control group experimental design [ ]. partici- pants’ psychological states were measured before and after the intervention. the participants were instructed to perform forest activities for eight sessions (one hour-long session per week). we designed the forest activities to be performed voluntarily (see figure ). to perform forest activities, an instruction booklet was administered to each participant. the instruction leaflet was developed based on consultation from experts in the forest therapy field, includ- ing researchers and practitioners. five forest activities were selected in this study to apply as the campus forest activities intervention: stretching, respiration, walking, meditation, and exercise. the forest activities interventions were provided from september to november of . the interventions were performed once a week during the daytime, depending on participants’ preferred schedule. during each of the eight sessions in the intervention, participants were asked to walk along the designated route in the campus forest, visit specific locations where explanatory panels on forest activities were installed, and return to the starting point at an appointed time. (see figure ). in the first session of the intervention, the leaflet was distributed to each participant. we asked the participants to perform the forest activities intervention at least once a week according to the leaflet’s instructions. details regarding the instructions used for each activity are included in appendix a. the participants in the control group did not receive leaflets, lectures, or any forest activities, and were asked to follow out their routine activities during the experimental period. the requests provided to both groups of participants during the intervention are shown in table . int. j. environ. res. public health , , of int. j. environ. res. public health , , x for peer review of forest activities, and were asked to follow out their routine activities during the experi- mental period. the requests provided to both groups of participants during the interven- tion are shown in table . figure . maps of the campus forest activities trail in this study. (a) stretching (b) respiration (c) walking (d) exercise figure . maps of the campus forest activities trail in this study. int. j. environ. res. public health , , x for peer review of forest activities, and were asked to follow out their routine activities during the experi- mental period. the requests provided to both groups of participants during the interven- tion are shown in table . figure . maps of the campus forest activities trail in this study. (a) stretching (b) respiration (c) walking (d) exercise int. j. environ. res. public health , , x for peer review of (e) meditation figure . campus forest activities intervention. . . psychological measurement the psychological evaluations used the profile of mood states (poms), the modified form of the stress response inventory (sri-mf), and the concise measure of subjective well-being (comoswb) questionnaires. the poms is a well-established measure of emotional state and is a reliable and valid instrument for assessing psychological distress [ , ], and has been used previously to estimate the influence of a forest experience on mood states [ – ]. it simultaneously evaluates six mood states: “tension-anxiety (t–a)”, “depression-dejection (d)”, “anger-hostility (a–h)”, “fatigue (f)”, “confusion (c)”, and “vigor (v)” [ , ]. a five-point likert scale ( = strongly agree to = strongly disagree) was used for each item to evaluate each participant’s mood state. in this study, we em- ployed the short form of the korean version of the poms ( items) [ ]. the korean ver- sion of poms was revealed to have relatively high reliability (cronbach’s α = . ). the sri-mf was used to assess the participants’ stress response levels. the sri-mf is a self-reported tool that measures the participant’s stress response levels, including so- matization, anger, and depression [ , ]. the sri-mf is a key measurement tool concern- ing stress, particularly the mental health and physical symptoms related to stress [ ]. it has been used previously to estimate the effect of a forest therapy program on stress [ ]. the sri-mf has items, and each item has a -point likert scale ( = strongly disagree; = strongly agree). the sri-mf was revealed to have relatively high reliability (cronbach’s α = . ) [ ]. the comoswb was used to assess each participant’s subjective well-being states. the comoswb measures three sub-scales: life satisfaction, positive emotion, and nega- tive emotion [ ]. it has been used previously to estimate the effect of a forest therapy program on happiness [ ]. the comoswb has a total of nine items with a -point likert scale ( = strongly disagree; = strongly agree). the comoswb was revealed to have relatively high reliability (cronbach’s α = . ) [ ]. . . data analysis the statistical analyses were performed using spss . windows (spss, chicago, il. usa). descriptive statistics comprised means, standard deviation, frequency, and per- centage to present socio-demographic information and outcome variables. paired t-tests were used to compare participants’ psychological states between pre-and post-tests for each group (forest activities intervention and control groups). all statistical tests used a p- value of < . as the significance level. figure . campus forest activities intervention. int. j. environ. res. public health , , of . . psychological measurement the psychological evaluations used the profile of mood states (poms), the modified form of the stress response inventory (sri-mf), and the concise measure of subjective well-being (comoswb) questionnaires. the poms is a well-established measure of emotional state and is a reliable and valid instrument for assessing psychological dis- tress [ , ], and has been used previously to estimate the influence of a forest experience on mood states [ – ]. it simultaneously evaluates six mood states: “tension-anxiety (t–a)”, “depression-dejection (d)”, “anger-hostility (a–h)”, “fatigue (f)”, “confusion (c)”, and “vigor (v)” [ , ]. a five-point likert scale ( = strongly agree to = strongly disagree) was used for each item to evaluate each participant’s mood state. in this study, we employed the short form of the korean version of the poms ( items) [ ]. the korean version of poms was revealed to have relatively high reliability (cronbach’s α = . ). the sri-mf was used to assess the participants’ stress response levels. the sri-mf is a self-reported tool that measures the participant’s stress response levels, including somatization, anger, and depression [ , ]. the sri-mf is a key measurement tool con- cerning stress, particularly the mental health and physical symptoms related to stress [ ]. it has been used previously to estimate the effect of a forest therapy program on stress [ ]. the sri-mf has items, and each item has a -point likert scale ( = strongly disagree; = strongly agree). the sri-mf was revealed to have relatively high reliability (cronbach’s α = . ) [ ]. the comoswb was used to assess each participant’s subjective well-being states. the comoswb measures three sub-scales: life satisfaction, positive emotion, and negative emotion [ ]. it has been used previously to estimate the effect of a forest therapy program on happiness [ ]. the comoswb has a total of nine items with a -point likert scale ( = strongly disagree; = strongly agree). the comoswb was revealed to have relatively high reliability (cronbach’s α = . ) [ ]. . . data analysis the statistical analyses were performed using spss . windows (spss, chicago, il, usa). descriptive statistics comprised means, standard deviation, frequency, and percentage to present socio-demographic information and outcome variables. paired t-tests were used to compare participants’ psychological states between pre-and post-tests for each group (forest activities intervention and control groups). all statistical tests used a p-value of < . as the significance level. . results . . psychological measurements . . . profile of mood states (poms) the results of paired t-tests between pre-and post-tests poms scores for each group are presented in the table . as shown in table , there was a significant decrease in total mood disturbance scores for the campus forest activities group after eight sessions of the forest activities intervention (t = . , p < . ). the results of paired t-tests indicate that there were significant positive changes in five subscales of the poms, except for one subscale, entitled “anger-hostility” (t = . , p > . ): “tension-anxiety” (t = . , p < . ), “depression-dejection” (t = . , p < . ), “fatigue-inertia” (t = . , p < . ), “confusion-bewilderment” (t = . , p < . ), and “vigor” (t = - . , p < . ). however, there were no significant changes in the control group participants’ changes in total mood disturbance and all six subscales of the poms: “tension-anxiety”, “anger- hostility”, “depression-dejection”, “fatigue-inertia”, “confusion-bewilderment”, and “vigor”. int. j. environ. res. public health , , of table . the results of paired t-test analyses of subjective profile of mood state (poms) scores. cfa cont. before after t p before after t p tmd . ± . . ± . . . ** . ± . . ± . − . . t–a . ± . . ± . . . * . ± . . ± . − . . a–h . ± . . ± . . . . ± . . ± . . . d . ± . . ± . . . * . ± . . ± . − . . f . ± . . ± . . . *** . ± . . ± . − . . c . ± . . ± . . . *** . ± . . ± . − . . v . ± . . ± . - . . * . ± . . ± . . . notes: t–a, tension-anxiety; a–h, anger-hostility; anger-hostility; d, depression; f, fatigue; c, confusion; v, vigor; tmd, total mood disturbance. campus forest activities group (cfa) and control group (cont.). *** p < . , ** p < . , * p < . . . . . modified form of the stress response inventory (sri-mf) the results of paired t-tests between pre-and post-tests sri-mf scores for each group are presented in the table . as shown in table , there was a significant decrease in total stress response scores for the campus forest activities group after eight sessions of the campus forest activities intervention (t = . , p < . ). the results of paired t-tests indicate that there were significant positive changes in three subscales of the sri-mf: “somatization” (t = . , p < . ), “anger” (t = . , p < . ), and “depression” (t = . , p < . ). table . the results of paired t-test analysis of modified form of the stress response inventory (sri-mf) scores. cfa cont. before after t p before after t p total . ± . . ± . . . ** . ± . . ± . − . . somatization . ± . . ± . . . ** . ± . . ± . − . . anger . ± . . ± . . . * . ± . . ± . − . . depression . ± . . ± . . . ** . ± . . ± . . . notes: total, total happiness. campus forest activities group (cfa) and control group (cont.). ** p < . , * p < . . however, there were no significant changes in the control group participants’ total stress responses and other sub-scales of the sri-mf: “somatization”, “anger”, and “depression”. . . . concise measure of subjective well-being (comoswb) the results of paired t-tests between pre-and post-tests comoswb scores for each group are presented in the table . as shown in table , there was a significant increase in total happiness scores for the campus forest activities group after eight sessions of the campus forest activities intervention (t = − . , p < . ). the results of paired t-tests indicate that there were significant positive changes in two subscales of the comoswb: “life satisfaction” (t = − . , p < . ), “negative emotion” (t = . , p < . ). however, there were no significant changes in the subscale titled “positive emotion.” table . the results of paired t-test analyses of concise measure of subjective wellbeing (comoswb) scores. cfa cont. before after t p before after t p total happiness . ± . . ± . − . . ** . ± . . ± . − . . life satisfaction . ± . . ± . − . . ** . ± . . ± . − . . positive emotion . ± . . ± . − . . . ± . . ± . − . . negative emotion . ± . . ± . . . * . ± . . ± . . . notes: campus forest activities group (cfa) and control group (cont.). ** p < . , * p < . . int. j. environ. res. public health , , of on the other hand, there were no significant changes in the control group partici- pants’ total happiness and other sub-scales of the comoswb: “life satisfaction”, “positive emotion”, and “negative emotion”. . discussion this study evaluated the psychological effectiveness of forest activities in a campus forest. this study revealed that campus forest activities intervention participants had significantly positive mood states, stress responses, and happiness after the intervention. the results of this study indicate that the campus forest provides effectiveness in improving college students’ psychological health. to date, many empirical research results have shown that forest therapy programs carried out in forests far away from the city provide a wide range of psychological health benefits to the program participants [ , ]. however, few studies on the psychological effects of campus forest activities have been reported. therefore, this study suggests that campus forests can help to promote psychological well-being among university students. this study showed that the negative mood states of “tension-anxiety”, “depression- dejection”, “fatigue”, and “confusion” were lower, and the positive mood states of vigor were significantly higher after campus forest activities intervention. these results, which demonstrate the psychological benefits of campus forest activities, are consistent with previous findings demonstrating improvements in mood states after walking through urban green space [ – ] and forest areas [ , ]. this result also found that the total stress responses and other subscales of the sri- mf such as “somatization”, “anger”, and “depression” were significantly lower after the campus forest activities. this study confirms that campus forest activities had a significant effect on stress reduction. this is consistent with the results of previous studies showing a reduction in psychological stress after viewing a forest and forest walking [ – ]. for example, morita et al. [ ] reported that forest walking could improve self-rated health status and reduce psychological stress. marselle et al. [ ] showed that nature-based walking reduced perceived stress, depression, and negative emotion and improved positive emotions and mental health. im et al. [ ] reported that forest walking significantly decreased stress response scores compared to city walking. in addition, khianman et al. [ ] demonstrated the stress-reduction effect of forest therapy on various subjects. these findings show that the benefits of forest therapy activities in stress relief are consistently evaluated as significant results. this study also shows participants’ increased happiness levels in the campus for- est activities intervention group. the results of this study are consistent with previous studies’ improvement of happiness after partaking in forest activities, such as playing in the forest and the forest therapy program. park et al. [ ] reported that employees’ subjective happiness increased after participating in four sessions of a forest therapy pro- gram. happiness increased in children who played in forests comparing with those who played in classrooms [ , ]. similar studies have shown that green spaces, including forests, promote a sense of happiness [ ]. for example, luck et al. [ ] reported that vegetation cover had the strongest positive relation with personal well-being. according to lohr and pearson-mims [ ], people felt more positive emotions and happiness when viewing trees than inanimate objects. van herzele and de vries [ ] and mackerron and mourato [ ] reported that people living adjacent to green space were happier than people living in urban environments. people more related to nature tend to seek more experiences with nature, and benefit from the well-being outcomes from those experiences, such as feelings of positive mood and happiness [ , ]. promoting participants’ happiness offers significant benefits. happiness can create pleasant moods, positive emotions, positive atti- tudes toward oneself and others [ ], and is known to be significantly linked to reduced heart disease rate [ , ] and mortality [ , ], health and longevity [ , ], and improved sleep [ ]. int. j. environ. res. public health , , of the results of this study reveal a positive relationship between students’ forest activ- ities and their psychological effects. however, it is not clear whether the psychological effects resulted from the activities the participants performed, the forest activities, or expo- sure to nature and the forest. further studies are needed to clarify this relationship. the influence of each forest activity performed by the participants on the psychological effects should also be investigated in further research. in particular, forest walking is one of the most representative activities of forest therapy. numerous studies have shown that walking in a forest improves mood state [ , ] and alleviates perceived stress [ , ]. walking in the forest has also been demonstrated to be more effective in improving mental health than walking in the city environment [ ]. diaphragmatic breathing [ , ] and meditation [ – ] in the forest have also re- ported positive psychological effects in some previous studies. meditation with deep breathing in the forest increases the connection with nature and improves mental, physical, and emotional well-being [ ]. the health promotion effects of outdoor activities were significantly enhanced when meditation was incorporated into nature activities [ , ]. holt et al. [ ] showed that students who engaged in the use of campus forests in passive ways, such as sitting, studying, or eating were not associated with health and wellbeing benefits, while students who actively engaged in the use of green space, such as being physically active outdoors, were strongly associated with a higher quality of life, better overall mood, and lower perceived stress. as mentioned above, previous research suggests that time spent in nature in energetic activity can promote restoration and reduce stress and improve happiness [ – ]. therefore, forest activities’ psychological effects through campus forests can be an efficient strategy to improve mental health. recent research showed that college students are constantly exposed to stressors and that the college period is an important time, during which young people adopt lasting healthy lifestyle habits, and is associated with increased chronic disease risk [ , ]. in particular, mental health problems are important. across all countries combined, . % of college students have major depression disorders and . % have generalized anxiety disorder [ ], and they have a higher rate of being diagnosed or treated by a profes- sional for anxiety, depression, panic attacks, and attention deficit hyperactivity disorder (adhd) [ ]. universities have been increasing their efforts to address this problem in various programs. the programs for students have included initiatives such as mindfulness programs, yoga classes, and pet therapy [ – ]. although a variety of programs has been used to address students’ mental health, the ability of campus forests to help the student is often overlooked. students, faculty members, and others use campus forests for a walk every day. however, the potential psychological benefits of campus forests are not widely acknowledged [ ]. therefore, this study can demonstrate the psychological health potential and suggest campus forests for health promotion resources to university students and other campus members. forest activity in campus forest is an effective and convenient way to escape busy college life and focus only on oneself. undertaking activities in natural environments reduces stress and anxiety and thus promotes health [ ]. our study suggests promoting opportunities for students to use campus forests and inform ways or activities for students to utilize campus forests to promote mental health. in addition, staff or faculty of the uni- versity can use campus forests in leisure activities whenever they can, such as lunchtime or rest time during work, which will help to relieve work stress. in this regard, the university should continue to maintain well-managed campus forests and expand convenient access to paths through natural areas, promoting campus forest or green space use. the university should also support education to increase students’ awareness around existing campus forests and the potential mental health benefits from regular use [ ]. however, we acknowledge the several limitations of this study. firstly, this study employed five forest activities (stretching, respiration, walking, meditation, and exercise). it is not clear which activity contributed the most to the results and how the differential effect of each of the activities affected the participants. further studies are needed to clarify int. j. environ. res. public health , , of and compare the various types of forest activities. secondly, the sample size of this study was small, and the participants for this study were limited to healthy university students in their s. to generalize the findings, further studies are needed create a large sample using different groups of the population with different socio-demographic characteristics. thirdly, this study was conducted in a campus forest to validate the psychological effect of campus forest activities. the potentials of different forests are not all the same and vary based on forest features. the effects according to the various characteristics of the forests (i.e., tree species composition, forest stand, structure, canopy cover, forest element-related) must be examined in the future. fourth, participants’ prior expectations and experiences with forests may influence the results. further study is needed considering the extent of exposure to nature in childhood and patterns of visits to forests. firth, in this study, the control group conducted their usual activities. some of the control group may use forests for their leisure, and those experiences may influence the results of this study. therefore, further studies are needed with participants who spend time in forests without giving them any instructions. sixth, for an overall discussion, verifying the effects of campus forests using other psychological methods is necessary to demonstrate the new possibility to promote students’ health. in a further study, it is necessary to investigate in depth what are the important variables that contribute to the psychological effects of campus forests. these limitations should be considered in future research. despite these limitations, this study provides a notable strength of the forest activities in a campus forest, which is that they are easily accessible to students to use whenever they can. . conclusions this study showed that the campus forest activities intervention provided significant psychological effects on college students. more specifically, there were significant positive changes in participants’ emotional states, stress responses, and happiness. the study results indicate the effectiveness of campus forest activities, suggesting the complementary use of different types of forest areas in such a modern urbanized society. these findings can provide guidance to decision-makers on the importance of the campus forest management, and policymakers can utilize these results in order to enhance student’s mental health. author contributions: j.g.k. performed data acquisition, statistical analysis, interpretation of the results, and manuscript preparation. j.j. was involved with acquisition of data. w.s.s. had an important a role in the overall performance of this research, particularly experimental design and research idea. all authors have read and agreed to the published version of the manuscript. funding: this research received no external funding. institutional review board statement: this study was approved by the institutional review board of chungbuk national university (irb number: cbnu- -sb- - ). informed consent statement: informed consent was obtained from all subjects involved in the study. data availability statement: the data presented in this study are available on request from the corresponding author. the data are not publicly available due to privacy. acknowledgments: we thank the forest healing lab members of chungbuk national university for their help. we also gratefully thank forest therapists for their valuable guidance. conflicts of interest: the authors declare no conflict of interest. appendix a. campus forest activities signs text ( ) forest stretching signs ( ) neck rotation: stand upright with both hands on your waist and turn your neck in one direction for eight beats. turn it in the opposite direction. ( ) shoulder rotation: stand upright with your fingertips on your shoulders and turn your shoulders in a circle. turn it in the opposite direction. int. j. environ. res. public health , , of ( ) waist rotation: stand upright with both hands on your waist and turn your waist in one direction. turn it in the opposite direction. ( ) knees rotation: bend your upper body, place your hands on your knees, and turn your knees in one direction. turn it in the opposite direction. ( ) wrist and ankle rotation: lightly rotate both wrists for eight beats while rotating one ankle together. ( ) forest respiration signs ( ) stand your upper body in a suitable place in the forest with your spine straight- ened. ( ) put your hands on the sides and slowly count ‘ , , , ’ ( s) in your mind and inhale deeply through your nose. ( ) slowly exhale into your mouth, counting eight seconds in your mind. ( ) repeat times. ( ) walking in the forest signs ( ) when you walk, walk in the order of heel-sole-toe position with your back straight. ( ) slowly inhale deeply through your nose, counting ‘ , , , ’ ( s) in your mind. ( ) slowly exhale into your mouth, counting eight seconds. ( ) forest exercise signs ( ) push-ups: stand facing a suitable tree nearby, put your palms on the tree. bend your elbows and lower your chest to the tree and push through the palms of your hands to straighten your arms (repeat to times). ( ) arm pull: stretch your arms forward, pull your arms backward as hard as possible, and then stretch them forward again (repeat times). ( ) squat: first, stand your feet shoulder-width apart. second, squat down by pushing your knees to the side while moving your hips back. third, break parallel by squatting down until your hips are lower than your knees. finally, press into your heels and straighten your legs to return to an upright standing position (repeat times). ( ) core exercise: keep your knees straight and raise your legs as high as possible (repeat times on both sides). ( ) heel raise exercise: keeping your knees straight, raise your heels up off the floor as far as you can go, and then slowly return (repeat times). ( ) forest meditation signs ( ) sit in a comfortable position with your spine straightened by standing your upper body in a suitable place in the forest. ( ) slowly inhale deeply through your nose, counting ‘ , , , ’ ( s) in your mind. ( ) slowly exhale into your mouth, counting eight seconds in your mind. ( ) now, i feel my thoughts and emotions calm as i find the breathing rhythm and focus on breathing. ( ) if you have miscellaneous thoughts, focus on your breathing. ( ) at this moment, focus fully on the present state. ( ) close your eyes. 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[crossref] [pubmed] http://doi.org/ . /oby. . http://doi.org/ . /abn http://doi.org/ . /j.edurev. . . http://doi.org/ . /j.jad. . . http://www.ncbi.nlm.nih.gov/pubmed/ http://doi.org/ . /ijerph http://www.ncbi.nlm.nih.gov/pubmed/ http://doi.org/ . /ijerph http://www.ncbi.nlm.nih.gov/pubmed/ 	introduction 	materials and methods 	participants 	experimental site 	procedure 	psychological measurement 	data analysis 	results 	psychological measurements 	profile of mood states (poms) 	modified form of the stress response inventory (sri-mf) 	concise measure of subjective well-being (comoswb) 	discussion 	conclusions 	campus forest activities signs text 	references efficient query processing and index tuning using proximity scores efficient query processing and index tuning using proximity scores dissertation zur erlangung des grades des doktors der ingenieurwissenschaften der naturwissenschaftlich-technischen fakultäten der universität des saarlandes andreas broschart universität des saarlandes saarbrücken dekan der naturwissenschaftlich-technischen fakultät i prof. dr. mark groves vorsitzender der prüfungskommission prof. dr.-ing. thorsten herfet berichterstatter pd dr.-ing. ralf schenkel berichterstatter prof. dr.-ing. gerhard weikum berichterstatter prof. torsten suel, phd beisitzer dr.-ing. klaus berberich tag des promotionskolloquiums . . acknowledgments i would like to to express my sincere gratitude to my supervisor, pd dr.-ing. ralf schenkel for guiding me from my master’s to my phd degree. he has always been a source of motivation and the door of his office has never been closed whenever i needed support. i would like to thank him for many interesting and fruitful discussions as well as for the scientific guidance he gave me. my special thanks go to prof. dr.-ing. gerhard weikum for giving me the oppor- tunity to pursue my phd studies in saarbrücken, for his helpful comments, and for joining the reviewers board. i would like to also thank prof. torsten suel, phd for accepting my request to review my phd thesis. furthermore, i would like to thank prof. dr.-ing. thorsten herfet for chairing the examination board and dr.-ing. klaus berberich for taking the minutes. finally, i would like to thank my colleagues for the great atmosphere at the work place and many enjoyable moments. eidesstattliche versicherung hiermit versichere ich an eides statt, dass ich die vorliegende arbeit selbständig und ohne benutzung anderer als der angegebenen hilfsmittel angefertigt habe. die aus anderen quellen oder indirekt übernommenen daten und konzepte sind unter angabe der quelle gekennzeichnet. die arbeit wurde bisher weder im in- noch im ausland in gleicher oder ähnlicher form in einem verfahren zur erlangung eines akademischen grades vorgelegt. saarbrücken, den . . (unterschrift) kurzfassung angesichts wachsender datenmengen stellt effiziente anfrageverarbeitung, die gleich- zeitig ergebnisqualität und indexgröße berücksichtigt, zusehends eine herausforderung für suchmaschinen dar. wir zeigen, wie man proximityscores einsetzen kann, um an- fragen effektiv und effizient zu verarbeiten, wobei der schwerpunkt auf eines der ziele gelegt wird. die hauptbeiträge dieser arbeit gliedern sich wie folgt: • wir präsentieren eine umfassende vergleichende analyse von proximityscoremo- dellen sowie eine gründliche analyse des potenzials von phrasen und passen ein führendes proximityscoremodell für die verwendung mit xml-daten an. • wir diskutieren für die präsentierten proximityscoremodelle die eignung zur top- k-anfrageverarbeitung und präsentieren einen neuen index, der einen inhalts- und proximityscore kombiniert, um top-k-anfrageverarbeitung zu beschleunigen und die güte zu verbessern. • wir präsentieren ein neues, verteiltes indextuningpaket für term- und termpaar- listen, das tuningparameter mittels wohldefinierter optimierungskriterien unter größenbeschränkung bestimmt. indizes können auf effizienz oder güte optimiert werden und sind bei hoher güte performant. • wir zeigen, dass gekürzte indizes mit einem merge join-ansatz top-k algorith- men mit ungekürzten indizes bei hoher güte schlagen. • außerdem präsentieren wir eine hybride indexstruktur, die cold cache-effizienz verbessert. i abstract in the presence of growing data, the need for efficient query processing under result quality and index size control becomes more and more a challenge to search engines. we show how to use proximity scores to make query processing effective and efficient with focus on either of the optimization goals. more precisely, we make the following contributions: • we present a comprehensive comparative analysis of proximity score models and a rigorous analysis of the potential of phrases and adapt a leading proximity score model for xml data. • we discuss the feasibility of all presented proximity score models for top-k query processing and present a novel index combining a content and proximity score that helps to accelerate top-k query processing and improves result quality. • we present a novel, distributed index tuning framework for term and term pair index lists that optimizes pruning parameters by means of well-defined optimiza- tion criteria under disk space constraints. indexes can be tuned with emphasis on efficiency or effectiveness: the resulting indexes yield fast processing at high result quality. • we show that pruned index lists processed with a merge join outperform top-k query processing with unpruned lists at a high result quality. • moreover, we present a hybrid index structure for improved cold cache run times. iii zusammenfassung auf der suche nach information erwarten leute qualitativ hochwertige ergebnisse bei schnellen antwortzeiten, zwei gegensätzliche ziele. angesichts ständig wachsen- der datenmengen wird dabei effiziente anfrageverarbeitung unter berücksichtigung von ergebnisgüte und indexgröße zusehends eine herausforderung für suchmaschinen. diese arbeit beschäftigt sich mit dem wichtigen problem, wie man proximityscore- modelle einsetzen kann, um anfrageverarbeitung gleichzeitig effizient und effektiv zu machen. wir stellen neuartige indexstrukturen vor, die top-k-anfrageverarbeitung er- lauben und auf eine reihe von proximityscoremodellen anwendbar sind. ein neuartiger algorithmus zur indexoptimierung kann für ergebnisgüte oder effizienz unter index- größenkontrolle optimiert werden. der erste teil dieser arbeit widmet sich hauptsächlich effektivitätsaspekten von proximityscoremodellen. in einer groß angelegten studie existierender proximityscoremodelle klassifizieren wir diese in vier kategorien: ) linearkombinationen eines inhaltsscoremodells und eines proximityscoremodells, ) integrierte scoremodelle, ) sprachmodelle mit wort- abstandskomponenten und ) modelle, die wortabstandsinformation verwenden und scoremodelle mit maschinellen lerntechniken erlernen. wir präsentieren eine verglei- chende effektivitätsanalyse für eine beträchtliche menge von proximityscoremodellen, die wir in einem gemeinsamen framework mit hilfe von vier testumgebungen evaluie- ren. wir führen einen systemorientierten vergleich der erforderlichen features jedes scoremodells durch. für jedes scoremodell in jeder testumgebung empfehlen wir modellparameter, die eine hohe ergebnisgüte erzielen. zusätzlich evaluieren wir, wie in [met a] vorgeschlagen, die robustheit jedes modells bezüglich modellparametern. weiterhin führen wir einige erweiterungen für proximityscores in der textsuche durch. die verwendung von phrasen als hartes filterkriterium für ergebnisse ist eine weitere möglichkeit, die ergebnisqualität zu verbessern. wir führen eine gründliche analyse des potenzials expliziter phrasen für die ergebnisqualität durch und verglei- chen sie mit der ergebnisqualität eines der führenden proximityscoremodelle. eine nutzerstudie untersucht, wie sehr nutzer bei der kennzeichnung von phrasen für eine gegebene anfrage übereinstimmen. wir validieren die weit verbreitete intuition, dass die verwendung von phrasen in anfragen die ergebnisqualität existierender retrieval- modelle steigern kann. jedoch ist die wahl geeigneter phrasen eine nichttriviale auf- gabe und kann unter umständen zu schwierig für benutzer sein, die zudem häufig über v die wahl geeigneter phrasen uneins sind. weiterhin kommt der anordnung von termen in anfragen nicht immer eine semantische bedeutung zu. aufgrund der verbreitung von xml-dokumenten ist es nützlich, dass eine such- maschine nicht nur unstrukturierte textdokumente unterstützt, sondern auch semi- strukturierte xml-daten. wir passen eines der besten proximityscoremodelle aus der textsuche an, um inhaltsanfragen auf xml-daten zu unterstützen. mit hilfe zusätz- licher abstände an den elementgrenzen tragen wir der dokumentstruktur für die xml- elementsuche rechnung, wenn wir die distanz von termauftreten berechnen. der zweite teil dieser arbeit konzentriert sich auf effizienzaspekte von proximity- scoremodellen. nachdem wir eine einführung in top-k und nicht-top-k algorithmen gegeben haben, passen wir eines der führenden proximityscoremodelle so an, dass wir es vorberechnen und in eine indexstruktur gießen können. weiterhin diskutieren wir für alle im ersten teil vorgestellten proximityscoremodelle die anwendbarkeit der zuvor entwickelten methoden. wo diese anwendbar sind, leiten wir obere und untere score- schranken für kandidaten und zwischenergebnisse in top-k algorithmen her und ent- wickeln passende indizes. wir zeigen weiterhin, dass bereits wenige tausend gelesene indexeinträge hinreichend sind, um eine ergebnisgüte zu erzielen, die mit ungekürzten indizes erreicht werden kann. weil derart wenige einträge gelesen werden müssen, eröffnet das die möglichkeit, auf gekürzten indexlisten einen merge join-basierten ansatz zu verwenden. das spart gleichzeitig zusätzliche kosten der top-k-algorithmen und reduziert signifikant die indexgröße. wir erzielen beeindruckende effizienzsteige- rungen um bis zu zwei größenordnungen verglichen mit dem lesen ungekürzter listen mit inhaltsscoreinformation. in einem ersten ansatz wurden dabei alle listen auf nicht- systematische art gekürzt. das ist die stelle, an der unser indexoptimierungspaket für term- und termpaar- indexlisten ins spiel kommt. wir schlagen einen systematischen ansatz vor, der mit wohldefinierten optimierungskriterien parameter zum kürzen von indexlisten errechnet. dazu entwickeln wir ein indexoptimierungspaket, das indexstrukturen für terme und termpaare für maximale ergebnisgüte oder maximale effizienz unter güte- kontrolle und indexgrößenbudget optimiert. das paket verwendet hadoop, ein open source mapreduce-paket und gestattet eine selektive materialisierung von termpaar- listen auf der basis von information aus einer anfrageprotokolldatei. wir zeigen, wie wir indizes sowohl mit als auch alternativ ohne bewertungen der ergebnisrelevanz optimieren können. die resultierenden gekürzten indizes bieten verlässliche anfrage- ausführungszeiten und eine ergebnisgüte, die vergleichbar oder sogar besser als die ungekürzter termindizes ist, welche die ergebnisgüte des bm -bewertungsmodells liefern. wir präsentieren eine hybride indexstruktur, welche term- und termpaarindex- listen kombiniert, um weniger gelesene listen gegen eine höhere gelesene datenmenge einzutauschen, um cold cache-laufzeiten zu verbessern. wir zeigen experimentell, dass die resultierenden gekürzten indizes anfragen um fast eine größenordnung gegenüber einem führenden top-k algorithmus bei vergleichbarer ergebnisgüte beschleunigen. wir führen ausgedehnte experimente auf den dokumentkollektionen gov und clueweb sowie für den inex efficiency track und den trec web track durch. summary when people search for information, they expect high quality results at fast processing times which are conflicting goals. in the presence of growing data, the need for efficient query processing under result quality and index size control increasingly becomes a challenge to search engines. this work addresses the important problem how to use proximity scores to make query processing effective and efficient at the same time. we present novel index structures for top-k query processing applicable to a number of proximity score models and a novel algorithm for index tuning that can be optimized for retrieval quality or efficiency under index size control. the first part of this thesis deals mainly with effectiveness aspects of proximity score models. in an extensive survey of existing proximity-enhanced score models, we put them into four categories: ) linear combinations of a content score model and a proximity score model, ) integrated score models, ) language models with proximity compo- nents, and ) models that incorporate proximity features and learn to rank by applica- tion of machine learning techniques. we present a comparative analysis of a significant set of proximity score models in a single evaluation framework with four test beds. we carry out a system-oriented comparison with the required features per score model. we give recommendations on how to set parameters for each combination of test bed and score model. in addition, we measure intercollection and intracollection generalization, entropy, and spread values as proposed in [met a]. furthermore, we elaborate on some extensions to proximity scores in text retrieval. usage of phrases as a hard filter criterion for results is a different means to improve retrieval quality. we carry out a rigorous analysis of the potential of explicit phrases for retrieval quality and compare it to the retrieval quality of a state-of-the-art proximity score model. a user study investigates the degree of user agreement about phrases in a query. we validate the common intuition that phrase queries can boost the performance of existing retrieval models, but choosing good phrases is a non-trivial task and might be too difficult for users as they frequently disagree on phrases in a query; furthermore, term order in queries does not always bear semantics. due to the dissemination of xml documents, it is useful for a search engine to not only support unstructured text documents, but also semi-structured xml data. we adapt one of the best performing proximity score models from text retrieval to support content queries on xml data. by means of virtual gaps in xml documents, we take vii the document structure into account when computing the distance of term occurrences. the second part of this thesis concentrates on efficiency aspects of proximity score models. after giving an introduction into top-k and non-top-k algorithms, we show how to adapt a state-of-the-art proximity score model for top-k query processing and devise appropriate index structures that allow precomputation of the required features. fur- thermore, we discuss the feasibility of all proximity score models presented in the survey for top-k query processing, give score bounds, and devise indexes where possible. we furthermore show that already a few thousand read entries are good enough to yield a retrieval quality comparable to reading unpruned index lists. as only that few entries have to be read, this opens the door to merge join processing on pruned index lists, saving on overhead costs of top-k query processing and index space requirements. we achieve impressive performance gains by up to two orders of magnitude compared to reading unpruned content score lists. however, all index lists have been pruned in a non-systematic, ad hoc style manner. that is the place where our index tuning framework for term and term pair index lists comes into play. we propose a systematic pruning approach with well-defined optimization criteria. to this end, we introduce a tunable indexing framework for term and term pair index structures for optimizing index parameters towards either maximal result quality or maximal query processing performance under result quality control, given a maximal index size. the index tuning framework is implemented on top of the open source mapreduce framework hadoop and allows a selective materialization of term pair index lists based on information from a query log. we show how to perform index tuning both in the presence and, alternatively, in the absence of relevance assessments. the resulting indexes provide dependable query execution times while providing result quality comparable to or even better than unpruned term indexes that provide bm score quality. we present a hybrid index structure that combines the term and term pair index lists to trade in a reduced number of fetched lists for an increased number of read bytes to improve cold cache run times. experimental results demonstrate that the resulting index configurations allow query processing that achieves almost one order of magnitude performance gain compared to a state-of-the-art top-k algorithm yielding results of comparable quality. we carry out extensive experiments on gov and clueweb , in the inex efficiency track and for the trec web track . contents introduction . contributions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . publications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . thesis outline . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . proximity score models . introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . motivation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . model and notation . . . . . . . . . . . . . . . . . . . . . . . . . . unigram models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . bm . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . lnu.ltc . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . es . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . language models, smoothing methods, and kl-divergence . . . . example . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . linear combinations of scoring models . . . . . . . . . . . . . . . . . . . . rasolofo and savoy . . . . . . . . . . . . . . . . . . . . . . . . . . . . büttcher et al. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . uematsu et al. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . monz . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . tao and zhai . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . integrated score models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . de kretser and moffat . . . . . . . . . . . . . . . . . . . . . . . . . . song et al. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . mishne and de rijke . . . . . . . . . . . . . . . . . . . . . . . . . . language models with proximity components . . . . . . . . . . . . . . . . lv and zhai . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . zhao and yun . . . . . . . . . . . . . . . . . . . . . . . . . . . . . learning to rank . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . general introduction to learning to rank approaches . . . . . . . . svore et al. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . metzler and croft . . . . . . . . . . . . . . . . . . . . . . . . . . . . cummins and o’riordan . . . . . . . . . . . . . . . . . . . . . . i . system-oriented comparison of implementation efforts per scoring model benchmarks . introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . initiatives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . the trec initiative and selected test beds . . . . . . . . . . . . . inex and selected test beds . . . . . . . . . . . . . . . . . . . . . . other initiatives . . . . . . . . . . . . . . . . . . . . . . . . . . . . measures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . measures for text/document retrieval . . . . . . . . . . . . . . . . measures for xml retrieval . . . . . . . . . . . . . . . . . . . . evaluation for selected score models . results from the original papers . . . . . . . . . . . . . . . . . . . . . . . . linear combinations of scoring models . . . . . . . . . . . . . . . . integrated score models . . . . . . . . . . . . . . . . . . . . . . . . . language models with proximity components . . . . . . . . . . . . learning to rank . . . . . . . . . . . . . . . . . . . . . . . . . . . . comparative analysis for selected score models . . . . . . . . . . . . . . . experimental comparison of scoring models . . . . . . . . . . . . . individual scoring models . . . . . . . . . . . . . . . . . . . . . . . . intercollection and intracollection generalization results . . . . . . sensitivity charts . . . . . . . . . . . . . . . . . . . . . . . . . . . . summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . extensions . introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xml . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xml background . . . . . . . . . . . . . . . . . . . . . . . . . . . . notation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . related work by beigbeder . . . . . . . . . . . . . . . . . . . . . . . proximity scoring for xml . . . . . . . . . . . . . . . . . . . . . . . experimental evaluation . . . . . . . . . . . . . . . . . . . . . . . . additional experiments for inex . . . . . . . . . . . . . . . phrases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . evaluating the potential of phrases . . . . . . . . . . . . . . . . top-k vs. non-top-k algorithms . top-k algorithms from db . . . . . . . . . . . . . . . . . . . . . . . . . . . sorted and random accesses . . . . . . . . . . . . . . . . . . . . . . no random accesses . . . . . . . . . . . . . . . . . . . . . . . . . . . carefully scheduled random accesses . . . . . . . . . . . . . . . . top-k algorithms from ir . . . . . . . . . . . . . . . . . . . . . . . . . . . . exact top-k algorithms from ir . . . . . . . . . . . . . . . . . . . . exact top-k algorithms from ir with a term proximity com- ponent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . approximate top-k algorithms from ir . . . . . . . . . . . . . . . non-top-k algorithms . . . . . . . . . . . . . . . . . . . . . . . . . . . . casting proximity scoring models into top-k query processing . introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . proximity scoring . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . proximity scoring models . . . . . . . . . . . . . . . . . . . . . . . . modification of büttcher’s scoring model . . . . . . . . . . . . . . indexing and evaluation framework . . . . . . . . . . . . . . . . . . . . . . precomputed index lists and evaluation strategies . . . . . . . . . evaluation setup . . . . . . . . . . . . . . . . . . . . . . . . . . . . . results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . results with pruned index lists . . . . . . . . . . . . . . . . . . . . comparison: topx(rr-last mode) on unpruned lists vs. merge join on pruned lists . . . . . . . . . . . . . . . . . . . . . . . . . . . conclusion of the experiments . . . . . . . . . . . . . . . . . . . . feasibility of scoring models for top-k query processing . . . . . . . . . . linear combinations of scoring models . . . . . . . . . . . . . . . . integrated score models . . . . . . . . . . . . . . . . . . . . . . . . . language models with proximity components . . . . . . . . . . . . learning to rank . . . . . . . . . . . . . . . . . . . . . . . . . . . . . summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . index tuning for high-performance query processing . introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . motivation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . contributions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . outline of the chapter . . . . . . . . . . . . . . . . . . . . . . . . . indexes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . parameter tuning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . tuning as optimization problem . . . . . . . . . . . . . . . . . . . . implementation of the tuning framework . . . . . . . . . . . . . . log-based term pair pruning . . . . . . . . . . . . . . . . . . . . . . . . . experimental evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . setup . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . index tuning on gov . . . . . . . . . . . . . . . . . . . . . . . . . query processing with gov . . . . . . . . . . . . . . . . . . . . . . log-based pruning with gov . . . . . . . . . . . . . . . . . . . . . summary of conclusions and limitations of the approach . . . . . . results with clueweb . . . . . . . . . . . . . . . . . . . . . . . . . results with inex . . . . . . . . . . . . . . . . . . . . . . . . hybrid index structure for efficient text retrieval . . . . . . . . . . . . . . introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . hybrid index framework . . . . . . . . . . . . . . . . . . . . . . . . experimental evaluation . . . . . . . . . . . . . . . . . . . . . . . conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . conclusion and outlook . conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . outlook . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . a retrieval quality and sensitivity b trec c inex list of figures list of tables references index list of abbreviations c = {d , . . . ,dn } : document corpus/collection consisting of n documents ctf(ti) = ∑ d∈c tf(ti,d) : collection term frequency of term ti in c df(ti) : document frequency of term ti in c dt : number of distinct terms in c dt(d) : number of distinct terms in document d idf(ti) : inverse document frequency of term ti in c idfj (ti) : inverse document frequency of term ti in c, variant j lc = ∑ d∈c ld : length of document collection c ld = |d| : length of document d le = |e| : length of element e k = k · [( − b) + b · ld avgdl ] : frequently occurring component in scoring models n : number of documents in the document corpus/collection c p ⊆ { , . . . , ld} : subset of positions in document d pd(t) = {i : pi(d) = t} ⊆ { , . . . , ld} : set of positions in document d where term t occurs pe(t) = {i : pi(e) = t} ⊆ { , . . . , le} : set of positions in element e where term t occurs pd(q) := ∪ti∈qpd(ti) : set of positions of all query terms in document d pe(q) := ∪ti∈qpe(ti) : set of positions of all query terms in element e pi(dj ) : term occurring at position i of document dj pi(ej ) : term occurring at position i of element ej q = {t , . . . , tn} : unordered query with query terms t , . . . , tn qadj,d(q) := {(i,j) ∈ pd(q) × pd(q) | (i < j) ∧ ∀k ∈ {i + , . . . ,j − } : k �∈ pd(q)} : set of pairs of query terms in document d that are adjacent to each other qadj,e(q) := {(i,j) ∈ pe(q) × pe(q) | (i < j) ∧ ∀k ∈ {i + , . . . ,j − } : k �∈ pe(q)} : set of pairs of query terms in element e that are adjacent to each other qall,d(q,dist) := {(i,j) ∈ pd(q) × pd(q) | (i < j) ∧ (j − i ≤ dist)} : set of pairs of query terms in document d within a window of dist positions qall,d(q) : the same as qall,d(q,dist), but employs a window size of dist = ld qall,e(q,dist) := {(i,j) ∈ pe(q) × pe(q) | (i < j) ∧ (j − i ≤ dist)} : set of pairs of query terms in element e within a window of dist positions qall,e(q) : the same as qall,e(q,dist), but employs a window size of dist = le qtf(ti) : query term frequency of term ti in a query sq = (t , . . . , tn) : ordered query td(p) = {t| i ∈ p ∧ pi(d) = t} : terms located at the positions of p in document d te(p) = {t| i ∈ p ∧ pi(e) = t} : terms located at the positions of p in element e tf(ti,d) : term frequency of ti in d v = {v , . . . ,vm} : vocabulary, set of terms which occur in an index wq = (qw(t ), . . . ,qw(tn)) ⊂ [ , ]n : query term weights for terms in query q chapter introduction there is a plethora of applications, on the web, in xml retrieval, in intranets, digital libraries, or desktop search, where large document collections need to be queried. users expect not only high quality answers but also require almost instant response times. to achieve these conflicting goals, index structures and algorithms have to be devised that index documents in a compact way that allows determining a ranking of the top matching documents without inspecting the entire index. in this thesis, we focus on retrieval models for proximity search, which go far beyond simple bag of words. proximity score models are a means to improve the retrieval quality of results by exploiting term position information of query term occurrences in documents where positional distances consider contextual information. clearly, a good proximity score model has also to be robust to model parameters. phrases are a hard filter for documents that can be used to further improve retrieval quality, but may also be subject to deleting potentially relevant results if the phrase in the query is not exactly matched in a document. proximity scores allow soft phrase querying without the requirement to specify phrases. the improvement in user-perceived result quality comes, however, in general at the price of a larger index size and higher query response times. as there is no need to exhaustively compute the score of all documents with respect to a query, as only the top ranked documents are shown to a user, we apply top-k algorithms which are an effective means to tackle efficiency issues by dynamic pruning/early termination. the key idea is to stop the query processing at a point where all potential top results have been inspected. in this context, it is important that a proximity score model can be cast into precomputed index lists to compute score bounds for result candidates, hence, allow early stopping. devising compact index structures that can be efficiently queried and at the same time provide highly accurate results is the task we consider in this thesis. we show how proximity scores that enhance retrieval quality can be integrated into efficient top-k algorithms. we propose to extend the index with additional term pair lists that maintain prox- imity scores. however, an index with these lists can become prohibitively large. a naive approach would simply cut index lists or exclude complete lists already . introduction during the indexing phase. however, it remains unclear where to cut index lists, hence the tradeoff between performance gains and loss in user-perceived result quality is rather ad-hoc and bears the risk to drastically favor one or the other extreme. to overcome this, in this thesis, we devise a number of techniques for limiting the index size. occurrences within a large proximity distance have only a marginal contribution to the overall score, we propose a window-based pruning approach that only considers term pair occurrences in a text-window of fixed size. we heuristically limit the list length to a constant number of entries, usually in the order of a few thousand entries. further list pruning with quality guarantees is applied. we show that pruned term and term pair lists provide a retrieval quality compara- ble to unpruned term lists. at the same time, this not only saves on disk space, but significantly accelerates query processing. we propose an index tuning framework that prunes term and term pair lists in a systematic fashion and we prune both list types by list length, term pair lists are additionally restricted to entries above a minimal proxim- ity score contribution. if the disk space is limited, control over the space consumption of index structures is necessary. it is desirable to opt between index optimization to- wards maximum efficiency and maximum effectiveness given an index size constraint. our approach allows tuning pruning parameters by using a set of queries and their relevance assessments for the collection to be indexed or, alternatively, if relevance as- sessments are not available, by a result overlap approach. in addition, query logs can be used to select term pair lists to be materialized. using lossless index compression, the index size can be further decreased. although this thesis focuses on web retrieval scenarios for the evaluation of the pre- sented approaches, the developed techniques are not only applicable to web retrieval, but also to other domains such as book search over digital libraries or intranet search for enterprises that keep track of various kinds of documents such as blueprints and patents. in fact, we make a proximity score feasible for xml element retrieval and show that we can apply our index tuning framework for indexes that support content queries for xml element retrieval. beyond the technical contributions in the area of proximity indexing and search, this thesis provides a comprehensive survey that describes and experimentally compares a significant portion of proximity scoring models. . contributions . we present a comprehensive comparative analysis of a significant set of proximity score models in a single evaluation framework with four test beds. we extensively present and classify existing proximity-enhanced score models in a joint notation; using one running example, we illustrate the various models and include a feature list to compare the required model features. we show how to adapt a state-of- the-art proximity scoring model to support content queries on xml data. . we carry out a rigorous analysis of the potential of explicit phrases for retrieval quality and compare it to the retrieval quality of a state-of-the art proximity score . publications model. a user study investigates the degree of user agreement about phrases in a query. . we propose a novel index structure that combines content and proximity scores. processing that index structure together with a content score index improves query processing in top-k algorithms by up to two orders of magnitude through tighter score bounds and a better retrieval quality compared to processing content score lists only. we apply top-k query processing to several proximity score models and devise appropriate index structures. . we show that already a few thousand read entries on unpruned term and term pair lists are good enough to yield a retrieval quality comparable to reading unpruned index lists. this insight opens the door to a simple merge join-based approach with pruned index lists: we require less disk space and keep the performance improvements. . we propose a novel, distributed index tuning framework for term and term pair index lists that optimizes pruning parameters for retrieval quality or efficiency under index size control with well-defined optimization criteria. we allow a selec- tive materialization of term pair index lists based on information from a query log and show how to perform index tuning both in the presence and in the absence of relevance assessments. . we present a hybrid index structure for improved cold cache run times of small and medium-sized queries that reduces the number of fetched index lists. . publications various aspects of this thesis have been published in [sbh+ , bs b, bs a, bst , bs , bbs , bs , bs , bs ]. effectiveness-related contributions have been described in the following publications: in [bs b], we have presented a proximity score model for content-only queries on xml data, enriched with additional experiments on a different test bed in [bst ]. [bs b] andreas broschart and ralf schenkel. proximity-aware scoring for xml retrieval. in proceedings of the st annual international acm sigir conference on research and development in information retrieval, sigir , poster. [bst ] andreas broschart, ralf schenkel, and martin theobald. experiments with proximity-aware scoring for xml retrieval at inex . in advances in focused retrieval, th international workshop of the initiative for the evaluation of xml retrieval, inex . . introduction in [bbs ], we have rigorously analyzed the potential of phrases, compared the retrieval quality to proximity scores and carried out a user study. [bbs ] andreas broschart, klaus berberich, and ralf schenkel. evaluating the potential of explicit phrases for retrieval quality. in advances in infor- mation retrieval, nd european conference on ir research, ecir , poster. efficiency-related contributions have been described in the following publications: in [sbh+ ], we have shown how to accelerate top-k query processing by means of a content score index structure and a new index structure that incorporates a content and a proximity score. furthermore, we have shown that a few thousand entries per list are enough to provide the same retrieval quality as on unpruned content score lists. in addition, pruning saves on index space. [sbh+ ] ralf schenkel, andreas broschart, seung-won hwang, martin theobald, and gerhard weikum. efficient text proximity search. in string pro- cessing and information retrieval, th international symposium, spire . in [bs a], we have presented the merge join-based approach with pruned index lists to save on overhead costs of top-k query processing and to lower index space requirements. [bs a] andreas broschart and ralf schenkel. effiziente textsuche mit positions- information. in grundlagen von datenbanken, . in [bs ], we have presented a novel, distributed index tuning framework which is a major part of this thesis (cf. chapter ) and supported it with extensive experiments especially for gov . additional experiments with this tuning approach for more test beds have been released for the inex efficiency track in [bs ] and for the trec web track in [bs ]. [bs ] andreas broschart and ralf schenkel. high-performance processing of text queries with tunable pruned term and term pair indexes. in acm transactions on information systems , volume , issue . [bs ] andreas broschart and ralf schenkel. index tuning for efficient proximity- enhanced query processing. in focused retrieval and evaluation, th in- ternational workshop of the initiative for the evaluation of xml retrieval, inex . [bs ] andreas broschart and ralf schenkel. mmci at the trec web track. in the nineteenth text retrieval conference proceedings, trec . . thesis outline in [bs ], we have presented a hybrid index structure for improved cold cache run times for pruned indexes from our index tuning framework that trades in a reduced number of fetched lists for an increased number of read bytes. [bs ] andreas broschart and ralf schenkel. a novel hybrid index structure for efficient text retrieval. in proceedings of the th international acm sigir conference on research and development in information retrieval, sigir , poster. . thesis outline chapter gives an extensive overview over proximity-enhanced score models that we put in four categories: after describing unigram models that serve as basis for proximity score models, we detail every proximity score model and carry out a system-oriented comparison of the implementation effort required per score model. chapter introduces two popular evaluation initiatives, namely trec (text retrieval), and inex (xml retrieval) and two less popular, niche initiatives. we present a choice of test beds for each of them and performance metrics for both text/document retrieval and for xml retrieval. chapter shows experimental results of the score models from the original papers surveyed in chapter . as they usually compare only a few of the score models, we perform a comparative analysis of a significant portion of proximity score models in a single evaluation framework using four test beds. chapter proposes one of the first xml score models that uses proximity information, rigorously analyzes the potential of explicit phrases for retrieval quality, and compares it to a proximity score. chapter presents various top-k algorithms from both the database systems and the ir community as well as non-top-k algorithms. chapter describes a modification of büttcher et al.’s score model that allows to use it in a top-k style with dynamic pruning techniques that not only improves retrieval effectiveness but also efficiency compared to standard top-k algorithms. we show that already a few thousand read entries per index list yield a good retrieval quality. this opens the door to using light-weight n-ary merge joins to save on processing overhead. moreover, we discuss the feasibility of the remaining proximity score models surveyed in chapter for top-k query processing and propose appropriate index structures where possible. chapter introduces our index tuning framework for trading off index size and result quality given an index size constraint. chapter concludes this thesis and outlines possible future research directions. chapter proximity score models . introduction . . motivation in search engines scoring functions play an important role to rank results supposed to answer user queries. therefore, the quality of the scoring function is decisive to user satisfaction and success of the search engine. nowadays, many search engines rely on some form of bm [rw , rwhb+ ], a state-of-the-art content-based scoring model commonly used in probabilistic information retrieval. it incorporates tf values (term frequency, i.e., the number of a term’s occurrences in a document) and idf values (inverse document frequency, i.e., the inverse of the number of documents that con- tain a term) plus document length information. content-based scoring models usually represent documents using ”bags of words” that consider all query term occurrences, but ignore the information where these query terms occur. that way those models ignoring positional information are foregoing the chances to leverage the power of term proximity information, i.e., measuring the distance between query term occurrences in a document and aggregating them into a proximity score to rank the document appro- priately. if this valuable information is ignored, users might face unsatisfactory results. suppose a user poses the query surface area of a triangular pyramid. scoring func- tions that completely ignore proximity information may consider documents relevant that contain query terms frequently, but in different paragraphs that are likely to treat different topics: in a document related to geometric objects like the one depicted in figure . , the first paragraph might elaborate on the ”volume of a triangular prism”, while the second talks about the ”volume of a square pyramid”, and the third about the ”surface area of a cylinder”. each of the query terms will individually occur quite frequently, but not in the user-intended context. from a user’s point of view, formu- lating her information need as a phrase query might be the solution to prevent such results. as phrase queries are usually used as hard filters, documents that do not con- tain the phrase terms in the exact order (as they might be interleaved by a different term or appear in a slightly different order) are ignored. unfortunately this comes at the expense of many discarded good results - documents carrying information about . proximity score models st paragraph: volume of a triangular prism nd paragraph: volume of a square pyramid document the triangular prism … its volume is therefore v=b*h … triangular prisms … the square pyramid … its volume can be computed as … square pyramids have been used … rd paragraph: surface area of a cylinder the surface area of a cylinder … its surface … figure . : non-relevant document for query surface area of a triangular pyramid. the ”surface area of a pyramid composed of four triangular faces” would certainly be a good hit, but excluded by the phrase query. proximity scores provide a solution to alleviate those effects by providing some kind of soft phrasing without the need to specify phrase bounds by the user. this chapter gives an extensive overview of existing proximity-enhanced score mod- els. we categorize them into the following four categories: • linear combinations of a content score model and a proximity score model de- scribed in section . (e.g., rasolofo and savoy [rs ], büttcher et al. [bc , bcl ], uematsu et al. [uif+ ], monz [mon ], and tao and zhai [tz ]), • integrated score models described in section . (e.g., song et al. [stw+ ], de kretser and moffat [dkm , dkm ], and mishne and de rijke [mdr ]), • language models with proximity components described in section . (e.g., lv and zhai [lz ], and zhao and yun [zy ]), and • models that incorporate proximity features and learn to rank by application of machine learning techniques described in section . (e.g., svore et al. [skk ], metzler and croft [mc ], and cummins and o’riordan [co ]). an experimental study in chapter will investigate the retrieval quality for a selec- tion of these approaches and compare them to the retrieval quality that can be achieved using bm . . . model and notation in order to describe the scoring models of this survey in a uniform manner, we first introduce some notation. . introduction definition . . . (corpus, vocabulary, position-related notation) a corpus c = {d , . . . ,dn } is a set of n documents where each document is considered a sequence of terms. the vocabulary v = {v , . . . ,vm} is the set of terms which occur in an index. given a document d with length ld, we denote the term occurring at position i of d by pi(d), ≤ i ≤ ld; if the document is clear from the context, we simply write pi. for a term t, we capture the positions in document d where t occurs by pd(t) = {i : pi(d) = t} ⊆ { , . . . , ld}; if d is clear from the context, we write p(t). we write pd(q) := ∪ti∈qpd(ti) for the positions of all query terms in document d, again omitting the suffix d if the document is clear from the context. given a set of positions p ⊆ { , . . . , ld} and a document d, we write td(p) to denote the set of terms at the positions of p ⊆ { , . . . , ld} in d. precisely, td(p) := {pi(d)|i ∈ p}. definition . . . (document frequency, inverse document frequency) a term ti occurs in df(ti) documents in c, the document frequency of ti. the inverse document frequency idf(ti) measures a term’s importance in c by means of an inverse function of df(ti). in the literature (e.g., [bcl , rs , uif+ ]), the inverse document frequency idf(ti) is used in (slightly) different versions , e.g., • idf (ti) = log ndf (ti) • idf (ti) = max{ , log n−df (ti)df (ti) }, and • idf (ti) = max{ , log n−df (ti)+ . df (ti)+ . }. definition . . . (term frequency, collection term frequency for terms and n-grams) given a term ti, a corpus c, and a document d in c, the term frequency of ti in d, tf(ti,d), is the number of times term ti occurs in d. the term frequency of the n-gram (ti, . . . , ti+n− ) in d, tf((ti, . . . , ti+n− ),d), is the number of times the n-gram (ti, . . . , ti+n− ) occurs in d. the collection term frequency of ti is the total number of oc- currences of the term ti in c and defined as ctf(ti) = ∑ d∈c tf(ti,d). the collection term frequency of the n-gram (ti, . . . , ti+n− ) is the total number of occurrences of the n-gram (ti, . . . , ti+n− ) in c and defined as ctf((ti, . . . , ti+n− )) = ∑ d∈c tf((ti, . . . , ti+n− ),d). definition . . . (document and collection length, number of distinct terms in a document or collection) given a corpus c and a document d in c, the document length of d corresponds to the number of term occurrences in d and is denoted by ld = |d|. the collection length corresponds to the number of term occurrences in c and is denoted by lc = ∑ d∈c ld. while dt(d) = |{t : tf(t,d) > }| stands for the number of distinct terms in document d, we use dt = |{t : ∃d ∈ c s.t. tf(t,d) > }| as an abbreviation for the number of distinct terms in c. please note that, unlike e.g., [rs , uif+ ], for idf (ti) and idf (ti), we have imposed a lower bound of zero to avoid negative score contributions of too frequent terms. . proximity score models for the ease of presentation, as a default, we assume that each query term occurs just once per query such that we can use sets of terms to model issued queries. in some cases it may be necessary to deviate from this (e.g., if the order of query terms in the original query matters). where applicable we will make additional remarks in the description of the affected scoring model. definition . . . (query, query term frequency, unordered query, ordered query, query term weights) w.l.o.g. the user issues an (unordered) query q′ = {t′ , . . . , t′x} which is supposed to represent her information need; the query processor evaluates only query terms from v , i.e., the evaluated query is q = q′ ∩v = {t , . . . , tn}. ordered queries are denoted by sq = (t , . . . , tn). the query term frequency denotes the number of times a query term t appears in a query sq, short qtf(t); for unordered queries qtf(t) is either or . query terms may be attributed query term weights wq = (qw(t ), . . . ,qw(tn)) ⊂ [ , ]n. definition . . . (set of pairs of adjacent query term occurrences, set of pairs of all query term occurrences) we denote pairs of query terms that are adjacent to each other (there might be non- query terms in between) in document d by qadj,d(q) := {(i,j) ∈ pd(q) × pd(q) | (i < j) ∧ ∀k ∈ {i + , . . . ,j − } : k �∈ pd(q)}. pairs of query terms within a window of dist positions in document d are defined as qall,d(q,dist) := {(i,j) ∈ pd(q) × pd(q) | (i < j) ∧ (j − i ≤ dist)}. please note that in this case, the query terms need not occur consecutively in a docu- ment. qall,d(q) := qall,d(q, ld) denotes all query term pairs in the document. . unigram models this section describes unigram models that serve as basis for proximity scores. . . bm we start with the probabilistic, content-scoring model bm [rw , rwhb+ ]. robertson and walker [rw ] define the relevance score of a document d for the query q = {t , . . . , tn} as scorebm (d,q) = ∑ ti∈q (k + ) · tf(ti,d) k · [( − b) + b · ld avgdl ] + tf(ti,d) · w rsj (ti) · (k + )qtf(ti) k + qtf(ti) , where the robertson/sparck jones weight [rj ] is defined as w rsj (ti) = log (r(ti) + . )(n − r − df(ti) + r(ti) + . ) (df(ti) − r(ti) + . )(r − r(ti) + . ) ; . unigram models r denotes the number of relevant documents, and r(ti) the number of relevant docu- ments which contain term ti. later publications substitute the robertson/sparck jones weight by a form of idf s.t. scorebm (d,q) = ∑ ti∈q (k + ) · tf(ti,d) k · [( − b) + b · ld avgdl ] + tf(ti,d) · idf(ti) · qtf ′(ti), where idf and qtf ′ determine the specific variant of bm ; idf is a variant of the inverse document frequency (as described in definition . . ) and qtf ′ (cf. definition . . ) represents a function that incorporates ti’s query term frequency qtf. in the bm scoring model, k, k , and b are constants (where k = k in the original definition), and avgdl is the average document length in the collection, i.e., avgdl = lc n . a frequently used abbreviation is k = k · [( − b) + b · ld avgdl ]. table . shows the idf and qtf ′ components and the tuning parameters k, k , b, and optionally k as used in a follow-up [rwhb+ ] to the original bm paper and in some proximity scores. k set to none indicates the absence of k in the re- spective method. additionally, the table contains a pointer to the section where the corresponding content/proximity scoring model is described. method idf or w rsj qtf ′ b k k k section robertson et al. w rsj (ti) (k + )·qtf (ti) k +qtf (ti) ∈[ . , . ] ∈[ . , . ] k . . rasolofo and savoy max{ , log n−df (ti) df (ti) } qtf (ti) k +qtf (ti) . . , . . uematsu et al. max{ , log n−df (ti)+ . df (ti)+ . } . . . none . . büttcher et al. log n df (ti) . . . none . . tao and zhai max{ , log n−df (ti)+ . df (ti)+ . } (k + )·qtf (ti) k +qtf (ti) optimal . . , . . cummins and o’riordan max{ , log n−df (ti)+ . df (ti)+ . } qtf (ti) . . none . . table . : overview: bm variations. in tao and zhai [tz ], b is tuned for optimality on bm , although its exact value is not reported. for our own experiments, we use the bm score as used by büttcher et al. in [bc , bcl ]. . . lnu.ltc buckley et al. [bsm ] introduced the lnu.ltc weighting scheme used by monz [mon ] (cf. section . . ) in a normalized version. lnu specifies the document weight that is determined by a logarithmically smoothed term frequency and a pivoted length nor- malization. ltc relates to the query term weight that is computed by a logarithmically smoothed query term frequency in combination with idf and a standard cosine normal- ization. the original bm paper [rw ] does not specify the parameter choices while [rwhb+ ] shows typical values and ranges. . proximity score models the formulation for the lnu weighting is lnu(d,ti) = +log(tf (ti,d)) +log(avgtj ∈{t:tf (t,d)> }tf (tj ,d)) ( − slope) · pivot + slope · dt(d) . the slope value is fixed at . , pivot is set to the average number of distinct terms per document in the collection. the ltc weighting scheme for queries is ltc(ti) = (log(qtf(ti)) + ) · idf (ti)√∑ tx∈q[(log(qtf(tx)) + ) · idf (tx)] . . . es cummins and o’riordan employ a term weighting scheme learned in [co ] scorees (d,q) = ∑ ti∈td(pd(q)) tf(ti,d) · qtf(ti) tf(ti,d) + . · √ ld avgdl · √ ctf(ti) · n df(ti) and linearly combine it with their proximity score combinations learned by genetic programming as described in [co ]. section . . elaborates on the details of the learning process and specifies the learned proximity scores. . . language models, smoothing methods, and kl-divergence another group of models are language models (lm) which have been employed in several areas of computer science such as speech recognition. ponte and croft [pc ] and hiemstra [hie ] were the first to use language models in information retrieval. language models aim at modelling the query generation process. to this end, they rank documents according to the likelihood that a random sample of a document generates a given ordered query sq = (t , . . . , tn). this likelihood is captured by means of a document language model for each document. the most basic language model is the unigram language model that uses bag-of-words. it relies only on term distributions and does not use any context information: punigram(q|d) = n∏ i= p(ti|d), where p(ti|d) = tf (ti,d)ld which corresponds to the maximum likelihood model for document-term probability. for completeness, we introduce bigram language models which consider the previous term as a context (and therefore already incorporate some proximity information by means of the context information) such that pbigram(q|d) = p(t |d) n∏ i= p(ti|ti− ,d), . example where p(ti|ti− ,d) = tf ((ti− ,ti),d)tf (ti− ,d) . the general form of n-gram language models consid- ers the previous n- terms and defines probabilities analogously to the bigram language model. in [zl ], zhai and lafferty survey different smoothing methods and compare their performance. smoothing methods aim at adapting the maximum likelihood estimator such that data sparseness is compensated. jelinek-mercer smoothing [jm ] uses a linear interpolation of the maximum likelihood model for document-term probability as foreground model and the collection-term model as background model. it uses a mixture parameter δ to control the influence of each model p(t|d,c) = ( − δ) · p(t|d) + δ · p(t|c), where p(t|d) = tf (t,d) ld and p(t|c) = ctf (t) lc . for a non-seen term t in d, tf(t,d) is which would make the score of that document zero for any query containing t (as p(t|d) = ); smoothing aims at fixing that flaw by introducing the background model. another popular smoothing method surveyed in [zl ] is the dirichlet prior p(t|d,c) = tf(t,d) + μ · p(t|c) ld + μ , where μ is a smoothing parameter. kl-divergence [lz ] measures the difference of two probability distributions. in the case of language models it compares a query language model and a document language model. the basic form of the kl-divergence model is defined as kl(f,g) = ∑ x f(x) · logf(x) g(x) . if f and g represent the same distribution, their kl-divergence value becomes – for larger values, the divergence is larger. lv and zhai (cf. section . . ) use kl-divergence to compare the similarity between a query language model and their positional language model that constructs a language model at each term position. the kl-divergence language model variant used by tao and zhai is defined as scorekl(d,q) = ∑ t∈td(pd(q)) (qtf(t) · ln( + tf(t,d) μ · p(t|c) )) + |q| · ln μ ld + μ , where p(t|c) = ctf (t) lc . . example as a running example, we will use a poem written by amy lowell (taken from ”a dome of many-coloured glass”) which is depicted in figure . . superscripts represent term positions. our query will be q = {sea,shell,song} or, for order-aware scoring models, sq = (sea,shell,song). the query terms (with position information, disabling match cases and ignoring punctuation) in the poem are located at {sea , shell , sea , shell , sea , shell , song , song , sea , shell , sea , shell }. . proximity score models sea shell sea shell, sea shell, sing me a song, o please! a song of ships, and sailor men, and parrots , and tropical trees, of islands lost in the spanish main which no man ever may find again, of fishes and corals under the waves, and seahorses stabled in great green caves. sea shell, sea shell, sing of the things you know so well. figure . : a poem with position information. . linear combinations of scoring models one category of text-proximity enhanced scoring models is based on linearly combining content and proximity scores. such scoring models always attribute a relevance score of the following form to a given document d with respect to a query q: score(d,q) = λ · cscore(d,q) + ( − λ) · pscore(d,q),λ ∈ ( , ). while cscore denotes the content score, pscore denotes the proximity score. in this section, we will present several approaches that can be assigned to this class of scoring models, namely scoring approaches by rasolofo and savoy [rs ], büttcher et al. [bc , bcl ], uematsu et al. [uif+ ], monz [mon ], and tao and zhai [tz ]. please note that the absolute scores computed in [rs , bc , bcl , mon , uif+ , tz ] differ by a factor of two from the descriptions presented here to fit our frame- work. dividing the scores from the original papers by two however neither influences the ranking (as the order of scores is preserved) nor the ratio between scores attributed to documents. . . rasolofo and savoy rasolofo and savoy [rs ] compute results of a query q by means of a two-stage algo- rithm: in stage one, the algorithm computes the top- documents from c according to the cscore which is a variant of okapi bm described in section . . . in stage two, it reranks these documents. to this end, for every such document, it computes the pscore. reranking just the top- documents from stage one is motivated by efficiency needs and the main interest to improve the ranking of the top-ranked documents. the algorithm sequentially reads the query term positions within d and computes a weight for each pair of query term positions (i,j) ∈ qall,d(q,dist) as tpi(i,j) = (i − j) . . linear combinations of scoring models the underlying assumption is that there is no semantic relationship between two key- words located in a text window with a width that exceeds dist. [rs ] sets dist to a value of . this means for the poem example and dist= that song only influences (and is influenced by) sea , shell , and song as these three occurrences are located within the text window of song . we define the sum of tpi contributions of term pair (ti, tj ) within a text window of size dist as tpiaccd(ti, tj,dist) = ∑ (i,j)∈qall,d(q,dist):pi=ti∧pj =tj tpi(i,j). as shell or sea are too distant from song in document d (i.e., they are not part of song ’s text window), the term pairs (shell , song ) and (song , sea ) do not influence tpiaccd(shell,song, ) and tpiaccd(sea,song, ), respectively. for our example the formula leads to the following tpiacc scores: tpiaccd(sea,sea, ) = ( − ) + ( − ) + ( − ) + ( − ) = . , tpiaccd(sea,shell, ) = ( − ) + ( − ) + ( − ) + ( − ) + ( − ) + ( − ) + ( − ) + ( − ) + ( − ) + ( − ) + ( − ) + ( − ) + ( − ) = . , tpiaccd(sea,song, ) = ( − ) = . , tpiaccd(shell,shell, ) = ( − ) + ( − ) + ( − ) + ( − ) = . , tpiaccd(shell,song, ) = ( − ) = . , and tpiaccd(song,song, ) = ( − ) = . . the weight for a pair of query terms (ti, tj ) wd(ti, tj,dist) = tpiaccd(ti, tj,dist) · (k + ) tpiaccd(ti, tj,dist) + k is structure-wise similar to the term frequency component of bm , substituting tf(t,d) for tpiaccd(ti, tj ). finally, the proximity scoring function for a document d on query q sums up the contributions of all pairs of query terms in document d. hence, the formulation pscore(d,q,dist) = ∑ (ti,tj )∈q×q wd(ti, tj,dist) · min{qw(ti),qw(tj )}, where qw(ti) = idf (ti) · qtf (ti)k +qtf (ti) , which shrinks the influence of a query term to the importance of the least important term in the considered pair. the final score is defined as scorerasolofo(d,q,dist) = · cscore(d,q) + · pscore(d,q). . proximity score models . . büttcher et al. büttcher et al. [bc , bcl ] combine the baseline bm scoring function with a proximity score which we will describe in the following to compute document-level relevance scores. for any document d, they maintain for every query term tk an accu- mulator value denoted by accd(tk). this accumulator value can be summarized by the following formula: accd(tk) = ∑ (i,j)∈qadj,d(q):pi �=pj ,pi=tk idf (pj ) (j − i) + ∑ (i,j)∈qadj,d(q):pi �=pj ,pj =tk idf (pi) (j − i) . büttcher et al. use adjacent query term occurrences to compute accumulator values. adjacency is used in the broader sense here such that non-query terms might be located between adjacent query terms. it is obvious that the accumulator value increases the more, the less distant the occurrences of two distinct terms are and the less documents in the collection contain the adjacent term. for our example we demonstrate how to compute accd scores. to this end we have to consider qadj,d(q)= {( , ), ( , ), ( , ), ( , ), ( , ), ( , ), ( , ), ( , ),( , ), ( , ), ( , )} which contains the position information of adjacent query term oc- currences in the example poem. accd(t) considers idf scores of t’s adjacent query terms. we briefly explain how to compute accd(song): for this purpose we consider all query term occurrences adjacent to any occurrence of query term song in d. song is adjacent to sea and shell is adjacent to song . accd(song) is increased by the idf scores of the adjacent terms of ’song’ but decreases with the square of increasing distance to the adjacent terms. please note that accd(song) is not influenced by (song ,song ) as p = p = song. consequently, accd(song) =[ idf (sea) ( − ) ] + [ idf (shell) ( − ) ]. the proximity score structurally resembles the bm scoring model presented in section . , substituting the accumulator values for the tf values: pscore(d,q) = ∑ t∈q min{ , idf (t)} accd(t) · (k + ) accd(t) + k . the document score for a document d structurally corresponds to the one formulated in subsection . . : scorebüttcher(d,q) = · cscore(d,q) + · pscore(d,q). in büttcher et al.’s approach [bc , bcl ] only adjacent query terms of the same document influence a query term’s aggregated proximity score. this varies the previous work by rasolofo and savoy [rs ] that considers all query terms within a given text window. moreover, büttcher et al. limit the term proximity score’s influence on the document score for terms occurring in just a few documents. they do so by restricting idf (t) as a multiplier in pscore to one. with b = . and k = k = . . linear combinations of scoring models . . uematsu et al. from a structural point of view, uematsu et al.’s approach [uif+ ] is very similar to büttcher et al.’s approach. like büttcher et al., they use a variant of bm (in a slightly different version) as cscore. details can be found in table . . the proximity score structurally resembles the cscore, however substitutes the tf values by co-occurrence values of all query terms. here coocc(d,q) counts the number of sentences where all query terms from q occur: pscore(d,q) = ∑ ti∈q coocc(d,q) · (k + ) coocc(d,q) + k · idf (ti). while the first sentence (positions to ) in our running example contains all query terms (sea, shell, and song) at least once, the second sentence (positions to ) only contains the query term song and the third sentence (positions to ) only sea and shell, but not song; hence coocc(d,q)= . scoreuematsu(d,q) combines its cscore and pscore in the same way as scorebüttcher : scoreuematsu(d,q) = · cscore(d,q) + · pscore(d,q). . . monz monz [mon ] uses a normalized version of buckley’s lnu.ltc weighting scheme [bsm ] as cscore. monz normalizes the lnu.ltc score scorelnu.ltc(d,q) = ∑ ti∈q lnu(d,ti) · ltc(ti) with respect to the maximal similarity score of the query such that scorelnu.ltc,norm(d,q) = scorelnu.ltc(d,q) maxd∈c scorelnu.ltc(d,q) . the model used for the pscore builds on the concept of a minimal matching span, which is the smallest text excerpt that contains all terms that occur both in the query and in the document. to capture the minimal matching span more formally, monz defines the concept of matching spans. given a document d and a query q, a matching span ms is a set of consecutive positions, where q ∩ td({ , . . . , ld}) = q ∩ td(ms). that means the consecutive document part represented by ms contains every query term that occurs in document d at least once. the length of a matching span is defined as length(ms) = max(ms) − min(ms) + , max(ms), min(ms) being the highest and lowest position in ms, respectively. a matching span for d and q with the shortest length is called minimal matching span mms(d,q); its length is denoted length(mms(d,q)). if multiple minimal matching spans exist, we can safely pick any of them (e.g., the one with the lowest min(ms)) . proximity score models to compute the proximity score pscore: we can do that since the pscore only uses length(mms(d,q)) (multiple minimal matching spans have the same length) and the number of query terms in the minimal matching span (which is also equal for multiple matching spans since they contain all query terms that occur in the document). we illustrate the concepts of matching span and minimal matching span using our running example, showing again the query term occurrences in d: sea ,shell ,sea ,shell ,sea ,shell ,song ︸ ︷︷ ︸ mms(d,q) ,song ,sea ,shell ︸ ︷︷ ︸ ms ,sea ,shell . matching spans of d contain all terms that occur both in q and d. therefore, { , . . . , }, but also others like { , . . . , } qualify as matching spans. a matching span with the smallest length, called minimal matching span, however, consists of { , . . . , }. note that in [mon ] minimal matching spans have been defined ambigu- ously. instead of defining the minimal matching span as the matching span with the shortest length in the given document, it has only been checked that a given matching span does not contain another matching span with lower length as a subset. however, this might result in multiple minimal matching spans of different lengths: in the exam- ple given above, employing the ambiguous definition of monz [mon ], { , . . . , } and { , . . . , } would qualify as minimal matching spans besides { , . . . , } since all of them do not contain another matching span with lower length as subset. the span size ratio considers the proximity of matching terms and is defined as ssr(d,q) = |q ∩ td({ , . . . , ld})| length(mms(d,q)) . it measures how large the document excerpt has to be in order to cover all possible distinct query terms in a document. in our example, length(mms(d,q)) = - + = and ssr(d,q) = = . . the matching term ratio mtr(d,q) = |q ∩ td({ , . . . , ld})| |q| measures the fraction of covered query terms in a document which is = . span size ratio and matching term ratio are used to compute the pscore(d,q) = ssr(d,q)α · mtr(d,q)β. here, α and β are additional weights for the span size ratio and the matching term ratio, respectively. the score of a document is then computed as scorem onz(d,q) = { λ · cscore(d,q) + ( − λ) · pscore(d,q) : |q ∩ td({ , . . . , ld})| > cscore(d,q) : else . if d contains only one query term (i.e., |q ∩ td({ , . . . , ld})| = ), the pscore is omitted. if |q ∩ td({ , . . . , ld})| > (i.e., the document d and query q have more than one query term in common), both cscore and pscore influence the final score. monz uses α= . , β= . , and λ= . for his experiments. . linear combinations of scoring models . . tao and zhai tao and zhai [tz ] linearly combine a baseline cscore with a proximity score. the baseline scores are ) the kl-divergence model and ) the okapi bm model as de- scribed in section . . the authors outline five proximity distance functions which can be classified into span-based and distance aggregation measures. the first class computes proximity scores based on the length of a text segment that covers all query terms. the second class aggregates distances over pairs of query terms and is more local than the first one which takes all query terms into account. the authors use two different span-based measures: ) span is defined as the length of the document part that covers all query term oc- currences in a document, i.e., span(d,q) = max(pd(q)) − min(pd(q)). ) min coverage (mincover) uses the length of the shortest document part that covers each query term at least once in a document, i.e., mincover(d,q) = min{max(p ′) − min(p ′) : td(p ′) = td(pd(q))}, where p ′ is a set of positions in document d. both span-based measures are normalized such that spannorm(d,q) = max(pd(q)) − min(pd(q)) |pd(q)| and mincovernorm(d,q) = min{max(p ′) − min(p ′)|td(p ′) = td(pd(q))} |td(p ′)| . distance aggregation measures come in three variants and are all based on the minimum distance between pairs of query terms ta and tb defined as mindist(ta, tb,d) = min{|i − j| : pi(d) = ta ∧ pj (d) = tb}. those three variants encompass ) minimum pair distance (mindist) which is the smallest distance over all query term pairs in document d, i.e., mindist(d,q) = minta,tb∈td(pd(q)),ta �=tb{mindist(ta, tb,d)}. ) average pair distance (avgdist) which is the average distance over all query term pairs in document d, i.e., avgdist(d,q) = n(n − ) ∑ ta,tb∈td(pd(q)),ta �=tb mindist(ta, tb,d) with n being the number of unique matched query terms in d. . proximity score models ) maximum pair distance (maxdist) which is the maximum distance over all query term pairs in document d, i.e., maxdist(d,q) = maxta,tb∈td(pd(q)),ta �=tb{mindist(ta, tb,d)}. for the case that document d contains just one kind of query term, mindist(d,q), avgdist(d,q), and maxdist(d,q) are all defined as ld. the authors propose two constraints for a function that transforms the value of a proximity distance function δ(d,q) into a proximity score π(d,q) which is a func- tion of δ(d,q). while the first constraint (called proximity heuristic) attributes smaller proximity scores to larger δ(d,q), the second constraint suggests a convex-shaped trans- formation function that only rewards really close term occurrences. both constraints lead to the definition of a proximity score π(d,q) = log(α + e−δ(d,q)), where α is a tuning parameter. the baseline retrieval models kl-divergence and bm are enriched with the proximity score such that r (d,q) = ·scorekl(d,q) + ·π(d,q) and r (d,q) = ·scorebm (d,q) + ·π(d,q). . integrated score models another category of proximity-enhanced score models are integrated score models. un- like the linear combination models presented in section . , integrated score models do not linearly combine cscore and pscore parts, but seek providing a holistic, integrated approach to rank. . . de kretser and moffat de kretser and moffat [dkm , dkm ] describe a model that does not make use of okapi bm [rw , rwhb+ ], but relies exclusively on proximity scores of query terms in the text collection. it retrieves the exact point of maximum similarity to the query for any given document, not the document as a whole. the presentation of result snippets can benefit from the knowledge about the exact point of maximum similarity as this opens the option to show only relevant document parts to the user. de kretser and moffat’s key assumption is that text regions having a high density of query terms are considered as highly important, while isolated query terms in a document are considered as less important. thus, dense text regions are attributed high scores, while text regions consisting of isolated query terms generate lower scores. to this end, for each query term t, there is a contribution function ct which expresses the impact of t, occurring at a position l, on the score for position x. there are three main factors that influence contribution functions: shape, height, and spread. the shape of the contribution function determines the region of influence of each appearance of t in d. de kretser and moffat implemented triangle, cosine, circle, and . integrated score models arc functions that are plotted in [dkm ]. unfortunately, the plots depicted in [dkm ] for arc and circle do not match the formulas. hence, we added two additional functions we named circle’ and arc’ that match the plots. ht -st st c t (x ,l) offset from query term occurence x-l triangle cosine circle arc figure . : plots according to formulas in [dkm ]. ht -st st c t (x ,l) offset from query term occurence x-l triangle circle circle’ arc’ figure . : arc and circle replaced to fit the plots in [dkm , dkm ]. the corresponding contribution functions are listed below: . triangle: ct(x,l) = max( ,ht · ( − |x−l|st )) . cosine: ct(x,l) = max( ,ht · ( +cos(π· |x−l| st )) ) . circle: ct(x,l) = max( ,ht · √ − ( |x−l| st ) ) . proximity score models . arc: ct(x,l) = max( , ht · ( − |x−l| st + √ − ( |x−l| st ) )) . circle’: ct(x,l) = max( ,ht · ( − √ − ( − |x−l| st ) )) . arc’: ct(x,l) = max( , ht · ( − √ − ( − |x−l| st ) + ( − |x−l| st ))), where |x − l| denotes the positional distance between an occurrence of query term t at position l and the position x we want to compute a score for. furthermore, ht represents the height and st the spread of t’s contribution function. the plots for the functions are depicted in figure . and figure . , respectively. s im il a ri ty x sea shell song figure . : example: triangle-shaped contribution function. the maximum height of the contribution function for a query term occurs at the position of each query term appearance. a query term t generates a contribution function using either a non-damped height ht,non−damped = qtf(t) · lc ctf(t) or a damped height ht,damped = qtf(t) · loge lc ctf(t) . integrated score models sc or e x (d ,q ) x aggregated figure . : example: aggregated score scorex. which are alternatively used as ht in the contribution functions. (the usage of qtf(t) indicates that this approach allows for term repetitions in the same query.) the spread or width of the contribution function determines the distance from the query term appearance in which the query term exerts non-zero influence to the aggregated score. a query term t influences proximity scores of terms within a radius of st = dt lc · lc ctf(t) = dt ctf(t) . the aggregated score for position x in document d and query q is the sum of the contribution function values: scorex(d,q) = ∑ t∈q ∑ l∈pd(t) ct(x,l). following our running example, figure . depicts the individual non-aggregated triangle-shaped contribution functions for each query term occurrence. figure . de- picts the aggregated scores at all locations in the example document; positions with query term occurrences are marked with crosses. to reduce computation costs, de kretser and moffat restrict the evaluation of ag- gregated proximity scores to locations where query terms appear. please note that, . proximity score models for some documents d, the highest scorex(d,q) might be located at a non-query term location x not considered for efficiency reasons. for the example document, whose ag- gregated scores at various positions are shown in figure . , this issue does not arise since the highest scorex(d,q) is achieved at positions and where query terms occur. figure . shows a scenario where the highest scorex(d,q) is located at a non-query term position. this example underlies a cosine-shaped contribution function that is applied to an example document that contains the query term shell at position and song at position . the highest scorex(d,q) value, however, is achieved at the non- query term position . sc or e x (d ,q ) x aggregated shell song figure . : example: highest aggregated score scorex located at a non-query term location. to obtain a ranking for documents, the authors describe two algorithms: for a given query q, both algorithms start off with retrieving for each document d in the corpus c the set of positions pd(q) where query terms occur. • the first algorithm computes for every document d and all positions x ∈ pd(q) the scorex(d,q) at position x in d; the scores from all documents are sorted in descending order. for each document d ∈ c the algorithm creates a document accumulator a[d] that keeps the document’s score. now the algorithm starts greedily processing the scores from all documents values and adds them to the corresponding accumulator until k documents have been seen. those documents are returned as the top-k results. . integrated score models • the second algorithm computes for each document d the maximum similarity score at any position x ∈ pd(q) in d and returns the k documents with the highest scores. as de kretser and moffat consider the first approach more effective, we use this one later for our experiments. . . song et al. song et al. [stw+ ] describe an algorithm that partitions documents into groups of subsequent query term occurrences. by construction, the query terms in such a group, called espan (short for expanded span), are pairwise distinct. by means of the espans that contain a query term, the algorithm computes the query term’s relevance contribution score (as a substitute for proximity scores) that is directly plugged into an okapi bm ranking function. the following assumptions underlie the design of the algorithm: the closer appro- priately chosen groups of query term occurrences in a document, the more likely that the corresponding document is relevant. the more espans contained in a document, the more likely that the document is relevant. the more query terms an espan of a document contains and the more important these terms are, the more likely that the document is relevant. the algorithm to detect espans is depicted in figure . and proceeds as follows: given a document d and a query q, all query term occurrences form a sequence of (term, position) pairs that are ordered by ascending position; each such pair is called hit. we identify the jth query term occurrence in the given document by (aj,bj ), aj and bj being the query term and its position in the document, respectively. the algorithm distinguishes four cases while scanning the position-ordered sequence of hits: ( ) if the distance between the current hit (aj,bj ) and the next hit (aj+ ,bj+ ) is larger than a user-defined threshold dmax (i.e., bj+ −bj > dmax), a new espan starts with the next hit. this is covered in lines - . ( ) if the current hit (aj,bj ) and the next hit (aj+ ,bj+ ) represent the same query term (i.e., aj = aj+ ), a new espan starts with the next hit which is described in lines - . ( ) if the next hit (aj+ ,bj+ ) represents a term aj+ which is identical to a hit’s term in the current subchain currentespan, it computes the distance between the current and the next hit as well as the distance between the existing hit and the current hit. the new espan begins at the bigger gap which is handled in lines - . ( ) otherwise the algorithm scans the next hit in the sequence of (query term, position) pairs which is caught in lines and . please note that for ( ) a tie-breaker is missing, if the distance between the current and the next hit equals the distance between the existing hit and the current hit. for this case our implementation always splits between the current and the next hit. . proximity score models detectespans(d, q) termsandpositions ← sortbypositionascending(d, q) length ← termsandpositions.length() espans ← {∅} currentespan ← ∅ for (j = to length- ) if ((bj+ − bj ) > dmax) currentespan ← currentespan ∪ {(aj , bj )} espans ← espans ∪ {currentespan} currentespan ← ∅ else if (aj+ = aj ) currentespan ← currentespan ∪ {(aj , bj )} espans ← espans ∪ {currentespan} currentespan ← ∅ else if (∃(ax, bx) ∈ currentespan s.t. bj+ = bx) dist ← bj+ - bj dist ← bj - bx if (dist ≥ dist ) currentespan ← currentespan ∪ {(aj , bj )} espans ← espans ∪ {currentespan} currentespan ← ∅ else espans ← espans ∪ {currentespan} currentespan ← {(aj , bj )} else currentespan ← currentespan ∪ {(aj , bj )} if (length �= ) currentespan ← currentespan ∪ {(alength, blength)} espans ← espans ∪ {currentespan} return espans figure . : detectespans pseudocode. for a query q, the set of all espans in document d is denoted as espans(d,q). we illustrate now how to compute all espans for a document with the help of our running example, assuming dmax= . the query term occurrences are located at {sea , shell , sea , shell , sea , shell , song , song , sea , shell , sea , shell }. the first espan consists of {sea , shell } by application of ( ) since sea is an identical hit to sea . as the distance between sea and shell equals the distance between shell and sea , our tie-breaker applies: it splits between the current hit shell and the next hit sea . the second espan follows the same rule and consists of {sea , shell }. the next espan consists of {sea , shell , song } by application of ( ) as song is identical to song . the distance between song and sea exceeds dmax. hence, by application of ( ), {song } forms an espan. according to ( ) the remaining two espans are {sea ,shell } and {sea ,shell }. intuitively, for song et al., the relevance contribution of an espan is a function of its density and the number of query terms occurring in the espan. the density of an espan is defined as density(espan) = #query terms(espan) width(espan) , . integrated score models where width(espan) = { maxpos(espan)-minpos(espan) + : #query terms(espan) > dmax: else , maxpos(espan)=max{b|(a,b) ∈ espan}, and minpos(espan)=min{b|(a,b) ∈ espan}. song et al. measure a term t’s relevance contribution given an espan that contains t by means of a function f(t,espan) = (density(espan))x · (#query terms(espan))y. if the given espan does not contain term t, f(t,espan) is set to zero. for all their ex- periments song et al. set x= . and y= . , respectively. depending on the collection, they set b= . and k = . (trec- and ) or b= . and k = . (trec- ). the relevance contribution of all occurrences of term t in espans(d,q) are accumu- lated to: rc(t,d) = ∑ espanj∈espans(d,q) f(t,espanj ). to compute the final score scoresong, the authors employ okapi bm and replace tf(ti,d) by rc(ti,d) with idf as idf score variant such that scoresong(d,q) = ∑ ti∈q rc(ti,d) · (k + ) rc(ti,d) + k · idf (ti). in contrast to okapi bm , which attributes a fixed weight of one to each term occurrence, the weight in song’s approach is dependent on the environment of the term occurrence and the density of the espan it has been assigned to. although both the approaches proposed by monz (cf. section . . ) and song et al. rely on spans to compute relevance scores, they differ in some features. while monz considers only the span of minimal length that contains all query terms, song et al.’s final relevance score incorporates multiple expanded spans. monz’ minimum matching spans contain all query terms that occur in the considered document, song et al.’s espan may only contain a subset of them. there is a threshold dmax that limits the width of expanded spans and the relevance contribution of espans is directly plugged in the okapi bm model. . . mishne and de rijke in [mdr ], mishne and de rijke make use of a scoring model similar to the tf-idf model [swy ] and additionally incorporate the coverage of query terms in the docu- ment to be scored. they use the ordered query sq to construct all possible term-level n-grams that are part of the query following an ”everything-is-a-phrase approach”. considering an ordered query sq=(sea, shell, song), the corresponding -grams are (sea), (shell) and (song), -grams are (sea, shell) and (shell, song), while the only -gram is (sea, shell, song). . proximity score models every term-level n-gram (i.e., n consecutively occurring terms in sq) derivable from the ordered query sq forms a phrase, with n between and the length of the ordered query. proximity terms are term-level n-grams like phrases but the authors use two rewrit- ing methods, namely the fixed distance and variable distance mode. for fixed distance proximity terms, the length of the proximity term n and a tuning parameter k are used as input to a combining method (e.g., k + n) that determines the window size where proximity term occurrences in documents are considered (an example follows below). if the distance is m = k + n, all term occurrences in a window of size m or less in a document are attributed the same score. for variable distance proximity terms, terms that are found in smaller windows than size m in the document are attributed a higher score: window sizes are decreased stepwise from m = k + n to + n and matching proximity terms are counted in each step. this is equivalent to issuing a query that consists of multiple fixed distance proximity terms of varying size; the tf value of the n-gram can be increased by one for each window size in which the n-gram occurs. phrases and proximity terms incorporate position information of query term occur- rences into the scoring model and can replace query terms. the score in its basic form where each ti represents a query term is defined as scorem ishne(d,sq) = ∑ ti in sq √ qtf(ti) · idf(ti) norm(sq) · √ tf(ti,d) · idf(ti) norm(d) · mtr(d,q) · weight(ti), where norm(sq) = √ ∑ ti in sq √ qtf(ti) · idf(ti) , norm(d) = √ ld, mtr(d,q) = |q ∩ td({ , . . . , ld})| |q| , and idf(ti) = + idf (ti). qtf(ti) counts the number of occurrences of query term ti in sq such that for sq=(sea, shell, song, sea), qtf(sea) would be . weight(ti) is used as a phrase weight proportional to the real term frequency of phrases in different fields of html documents (such as body, anchor text and title) and seems to be dis- abled for most evaluation methods. we think that norm(sq) should be rather√∑ ti in sq √ qtf(ti) · idf(ti) to make it appear more similar to a cosine normal- ization. the basic form of the scoring model with ti representing a query term can be varied such that ti represents a phrase, a fixed distance proximity term or a variable distance proximity term. we illustrate the effects of variable as well as fixed distance proximity terms on the computation of tf(ti,d) values for the example that ti represents the -gram (shell, song). . language models with proximity components the query terms shell and song occur at the following positions in the example document: shell ,shell ,shell ,song ,song ,shell ,shell . while (shell, song) never occurs as a phrase in our example document (the most proximate occurrence of this term pair is (shell ,song )), the term pair can still occur as a proximity term in the document if k is chosen large enough: if k is set to and the combining method is m = k + n, a window size of m= is induced (as the proximity term (shell, song) is a -gram which means n = ). using variable distance proximity terms is equivalent to using some fixed distance proximity terms of varying size; for the example with a window size of m = , using variable distance proximity terms is equivalent to using four fixed distance proximity terms (with a distance of , , , and ). as (shell ,song ) has one occurrence in a text window of terms for our example document, in the fixed distance proximity mode it increases tf((shell,song),d) by one, while it increases tf((shell,song),d) by two in the variable distance proximity mode; for a window size of and . being positions apart, (shell ,song ) does not influence tf(ti,d) = tf((shell,song),d). for efficiency reasons, document frequencies of phrases and proximity terms are estimated. to estimate the document frequency for a phrase or proximity term p=(ty, ty+ , . . . , tz) with length |p| = z − y + , mishne and de rijke use different heuristics for their estimations of idf values: • sum: idf(p) = ∑z i=y idf(ti) = ∑z i=y( + idf (ti)) • minimum: idf(p) = mini∈{y,...,z} idf(ti) = mini∈{y,...,z}( + idf (ti)) • maximum: idf(p) = maxi∈{y,...,z} idf(ti) = maxi∈{y,...,z}( + idf (ti)) • arithmetic mean: idf(p) = |p| · ∑z i=y idf(ti) = |p| · ∑z i=y ( + idf (ti)) • geometric mean: idf(p) = ∏z i=y idf(ti) |p| = ∏z i=y ( + idf (ti)) |p| . language models with proximity components this section presents the language models by lv and zhai [lz ] and by zhao and yun [zy ] that exploit proximity information. . . lv and zhai in contrast to most other works that deal with language models (lms), lv and zhai [lz ] do not use one general language model for each document, but one lan- guage model for each word position in a document coined positional language model (plm) estimated based on position-dependent counts of words. in most existing work on lms, the estimated document language models only consider the word counts in the document, but not the positions of words. plms implement two heuristics which are usually treated externally to lm approaches: . proximity score models . the proximity heuristic that rewards documents which have closeby occurrences of query terms and . passage retrieval that scores documents mainly based on the best matching pas- sage. plms facilitate the optimization of combination parameters that combine proximity and passage retrieval heuristics on one side and language models on the other side. furthermore, plms allow finding best-matching positions in a document, i.e., support soft passage retrieval. plms at a position of a document are estimated based on propagated word counts from the words at all other positions in the document: positions closer to a term occurrence in a document get a higher share of the impact than those farther away which captures the proximity heuristics. a similar approach has also been used by de kretser and moffat for text retrieval (cf. section . . ) and by beigbeder for xml retrieval (cf. section . . ). the propagation of a term occurrence to other positions is accomplished by a proximity-density function. a plm is a generalization of a standard document lm and a window passage lm. documents can be scored using one plm or by a combination of multiple plms. first, the authors build up a virtual document di for each position i in document d. di is a term frequency vector whose jth component contains the propagated count c′(tj, i) of occurrences of term tj in document d to position i. thus, p(t|d,i) = c ′(t, i)∑ t′∈v c ′(t′, i) is a plm at position i, where c′(t, i) = ld∑ j= c(t,j) · k(i,j). c(t,j) is the count of term t at position j which is iff t occurs at j ( otherwise), and k(i,j) (which can be any non-increasing function of |i−j|) serves as a discounting factor. the authors populate the discounting factor with one out of different kernels that determine the influence of a term occurring at position j to position i: . gaussian kernel: k(i,j) = exp[ −(i − j) σ ] . triangle kernel: k(i,j) = { − |i−j| σ if |i − j| ≤ σ otherwise . cosine (hamming) kernel: k(i,j) = { [ + cos( |i−j|·π σ )] if |i − j| ≤ σ otherwise . language models with proximity components . circle kernel: k(i,j) = { √ − ( |i−j| σ ) if |i − j| ≤ σ otherwise . passage kernel (=the baseline): k(i,j) = { if |i − j| ≤ σ otherwise the spread σ is a tuning parameter which is kept constant for all queries and query terms. de kretser and moffat’s approach described in section . . makes use of kernel functions named contribution functions; the authors employ triangle, cosine, and circle kernels as used by lv and zhai, but also an arc-shaped kernel which is not used here. furthermore, lv and zhai use two standard smoothing methods, namely dirichlet prior and jelinek-mercer smoothing (adapted to plms). following the descriptions of smoothing methods for lms in section . , application of dirichlet prior smoothing to lv and zhai’s plm leads to pdp (t|d,i) = c′(t, i) + μp(t|c) ( ∑ t′∈v c ′(t′, i)) + μ , and jelinek-mercer smoothing results in pjm (t|d,i) = ( − λ)p(t|d,i) + λp(t|c) with p(t|c) = ctf (t) lc . intuitively, p(t|d,i) describes the share of the impact of t to impacts of all terms at position i in d, the relative influence share of term t to position i in d. for each plm, the authors adopt the kl divergence model to compute a position i-specific score s(d,q,i) = − ∑ t∈v p(t|q) · log p(t|q) p(t|d,i) , where p(t|d,i) can be either the non-smoothed, dirichlet prior smoothed (pdp (t|d,i)) or jelinek-mercer smoothed pjm (t|d,i) variant; p(t|q) is the maximum likelihood estimate (mle) for a query language model, i.e., p(t|q) = qtf (t)|q| or a result of a pseudo relevance feedback algorithm. ranking options are as follows: • scoring all documents by the best position in that document: s(d,q) = maxi∈{ ,...,ld}{s(d,q,i)} • scoring all documents by the average of the best k positions in that document: s(d,q) = k · ∑ i∈top-k of all s(d,q,·) s(d,q,i) . proximity score models • scoring all documents using a weighted score based on various spreads σ: s(d,q) = ∑ σ∈r βσ · maxi∈{ ,...,ld}{sσ(d,q,i)} with r being a predefined set of spreads and ∑ σ∈r βσ = . . . zhao and yun zhao and yun [zy ] propose a proximity language model that incorporates a so-called proximity centrality and uses dirichlet prior smoothing. the proximity centrality is computed for every query term and expresses the query term’s importance for the proximity structure in document d relative to the query q = {t , . . . , tn}. the score for a document d relative to a query q is defined as score(d,q) = ∑ tf (ti,d)> ,ti in q p(ti|θ̂q) log ps(ti|d,u) αd · p(ti|c) + log αd, where θ̂q represents the language model estimate for q (s.t. p(ti|θ̂q) = qtf (ti)|q| ), and u = (u , . . . ,u|v |) are hyper-level parameters of the dirichlet prior with ui = λproxb(ti). ps(ti|d,u) = θ̂bd,ti = tf(ti,d) + ui + μp(ti|c) ld + ∑|v | i= ui + μ is the seen word probability of ti in document d wrt its proximity model. αd · p(ti|c) is the probability assigned to unseen words in d, where αd = μ ld + ∑|v | i= ui + μ and p(ti|c) = ctf(ti) lc . the authors implement three variants to compute the proximate centrality proxb(ti) of a term ti in d: . minimum distance: proxm indist(ti) = f(mintj �=ti,tj in q {dis(ti, tj,d)}) . average distance: proxavgdist(ti) = f( n− ∑ tj �=ti,tj in q dis(ti, tj,d)), where n = |{tj in q : tf(tj,d) > }| . summed distance: proxsump rox(ti) = ∑ tj �=ti,tj in q f(dis(ti, tj,d)) while dis(ti, tj,d) is the minimum pairwise distance between occurrences of the terms ti and tj in document d, f is a non-linear monotonic function to transform a pair- wise distance dist into a term proximity score: f(dist) = x−dist, where x is a scaling parameter. if not both ti and tj occur at least once in d, dis(ti, tj,d) is set to ld. . learning to rank . learning to rank . . general introduction to learning to rank approaches learning to rank approaches, a kind of supervised learning approaches, have become popular over the last decade. supervised learning approaches rely on a training set which consists of a set of training topics, a document collection represented by feature vectors, and the corresponding relevance assessments. according to [liu ], learning algorithms aim at learning a ranking model (i.e., how to combine the features) such that the learned ranking model can predict the ground-truth labels of the training set as accurately as possible where prediction accuracy is measured using a loss function. [liu ] contains a comprehensive review of many contributions in the research area of learning to rank. . . svore et al. svore et al. [skk ] extend the work by song et al. [stw+ ] summarized in sec- tion . . . they provide a measure how to determine the goodness of an espan and extend the espan feature set introduced in [stw+ ]. the initial approach presented in [stw+ ] used only the density of espans and the number of query terms to assess the goodness of an espan. in this method, the goodness gs of an espan s is defined as gs = ∑ f∈f αfvf,s, where f is a feature of s taken from a feature set f. αf denotes the weight of f and vf,s the value of f for s. the goodness score for document d that contains a set of espans s is defined as gd = ∑ s∈s ∑ f∈f αfvf,s = ∑ f∈f αf ( ∑ s∈s vf,s). the goal is to learn all feature weights αf . to this end, the sum of the document’s espans’ feature vectors is input into lambdarank [brl ]. espan-based features used for the goodness score can be assigned to different cate- gories: basic query match features, formatting and linguistic features, and third-party phrase features extracted from wikipedia titles and popular n-grams from search engine query logs. a detailed list of espan goodness features can be found in table . . model-related features which concern (unigram/standard) bm , a bigram version of bm as well as proximity match features are depicted in table . . they can be used as additional features to determine the goodness score of a document (substituting∑ s∈s vf,s). . . metzler and croft in [mc ], metzler and croft design a framework to model term dependencies using markov random fields (mrfs). in statistical machine learning, mrfs are used to . proximity score models query match features espan contains ≥ (≥ ) query terms (both binary) espan length (number of terms in espan) count of query terms in espan and density of espan formatting and linguistic features (f) count of indefinite and definite articles in espan count of stopwords in espan espan contains a sentence (paragraph) boundary (binary) espan contains only stopwords (all binary) espan contains html markup (bold, italic, tags) (binary) third-party phrase features (p) espan contains an important phrase (binary) count and density of important phrases in espan table . : espan goodness features. λbm features term frequency of query unigrams document frequency of query unigrams length of body content (number of terms) λbm - features term frequency of query bigrams document frequency of query bigrams proximity match features relevance contribution (per query term, rc in [stw+ ]) number of espans in the document maximum, average espan length, maximum, average espan density maximum, average count of query matches in espans length of espan with highest term frequency term frequency of espan with longest length, largest density table . : model feature sets. model joint distributions. [mc ] models a joint distribution pΛ(q,d) over random variables for queries q and documents d (an estimate of the relevance of a document to a query), parameterized by Λ. Λ is estimated given user-defined relevance assessments. the model uses three kinds of features, namely single query terms, ordered phrases, and unordered phrases. an mrf is generated from an undirected graph g whose nodes represent random variables while edges carry dependence information between random variables. there are two types of nodes, one query node for each query term qi and one document node d. dependent query terms are connected to each other by edges. all query term nodes are connected to the document node. there exist three variants of the mrf model: . learning to rank • full independence variant (fi): query terms are considered independent given a document d which means that p(qi|d,qj �=i) = p(qi|d), an assumption that many retrieval models like bag-of-words and unigram language models are based on. • sequential dependence variant (sd): adjacent query terms are considered depen- dent; i.e., p(qi|d,qj �=i) = p(qi|d) only for qj not adjacent to qi. this variant can represent biterm (non-order-aware occurrences of query terms in documents) and bigram (order-aware occurrences of query terms in documents) models. • full dependence variant (fd): all query terms are dependent on each other. the corresponding graph is complete. sea shell song d sea shell song d sea shell song d figure . : three variants of the mrf model for our running example query, i.e., sq=(sea,shell,song). we depict (left) the full indepence (fi) variant, (middle) the sequential dependence (sd) variant, (right) the full dependence (fd) variant. figure . illustrates the three variants of the mrf model for the query from our running example which means that sq=(sea,shell,song). while the fi variant considers the three query terms as independently occurring in documents, the sd variant con- siders the query as ordered and all adjacent query terms in the query as related: sea and shell as well as shell and song are treated as dependent. the fd variant considers all query term pairs as related: sea and shell, sea and song, and shell and song are connected in the graph. to utilize the mrf model, in a first step, the graph g to represent all query term dependencies is constructed. in a second step, a set of potential functions ψ(·, Λ) over cliques in the graph is defined. potential functions are parameterized as ψ(c, Λ) = exp(λcf(c)), where f(c) is a feature function over random variables in a clique c. the joint distribution over the random variables in g is defined as pΛ(q,d) = zΛ ∏ c∈c(g) ψ(c; Λ), where q = sq = (q , . . . ,qn), zΛ = ∑ q,d ∏ c∈c(g) ψ(c; Λ), and c(g) is the set of cliques in g. metzler and croft propose three kinds of potential functions that aim at . proximity score models abstracting the idea of term co-occurrence which can be applied to different kinds of cliques: • -clique, one edge between document node d and query node qi (i.e., c = qi,d): ψt (c) = λt log p(qi|d) = λt log[( − αd) tf(qi,d) ld + αd ctf(qi) lc ], where p(qi|d) is a smoothed language modeling estimate which uses a mixture of a document foreground model for document d and a collection background model, αd = μ μ+ld the dirichlet prior (cf. section . ). the potential function measures how likely or well d is described by qi. • cliques with two or more query nodes (i.e., c = qi, . . . ,qi+k,d): ψo(c) = λo log p(# (qi, . . . ,qi+k)|d) = λo log[( − αd) tf# (qi,...,qi+k),d ld + αd ctf# (qi,...,qi+k) lc ], where tf# (qi,...,qi+k),d is the number of occurrences of the exact phrase qi, . . . ,qi+k in d. • an unordered window of size n, cliques with two or more query nodes (i.e., c = qi, . . . ,qj,d): ψu (c) = λu log p(#uwn(qi, . . . ,qj )|d) = λu log[( − αd) tf#uwn (qi,...,qj ),d ld + αd ctf#uwn (qi,...,qj ) lc ], where tf#uwn (qi,...,qj ),d is the number of ordered or unordered occurrences of the query terms qi, . . . ,qj in d within a window of size n. . learning to rank in a third step, documents are ranked according to pΛ(d|q). pΛ(d|q) = pΛ(q,d) pΛ(q) ∝ pΛ(q,d) = zΛ ∏ c∈c(g) ψ(c; Λ) ∝ ∏ c∈c(g) ψ(c; Λ) ∝ ∑ c∈c(g) log ψ(c; Λ) = ∑ c∈c(g) log(exp(λcf(c))) = ∑ c∈c(g) λcf(c) = ∑ c∈t λt ft (c) + ∑ c∈o λofo(c) + ∑ c∈o∪u λufu (c) such that λt + λo + λu = . t is the set of -cliques representing one query term and a document d, o is the set of cliques with a document node and at least two continuously appearing query terms, and u a set of cliques with a document node and at least two non-contiguously appearing query terms. λt , λo, and λu need to be tuned such that the retrieval measure for a given test bed is maximized (the authors use the mean average precision value as retrieval measure). as the authors claim that the mean average precision curve has a near concave surface when plotted against the tuning parameters and due to the small number of tuning parameters, this makes tuning by simple hill climbing feasible (i.e., it is unlikely to run into a local maximum value). . . cummins and o’riordan cummins and o’riordan [co ] use some term-term proximity measures in a learning to rank framework. to give examples for the various measures, we use our running example, showing again the query term occurrences in d, sea ,shell ,sea ,shell ,sea ,shell ,song ,song ,sea ,shell ,sea ,shell . for the ease of presentation, we restrict ourselves to the query term pair (sea,song) when we explain term-term proximity measures. measures which explicitly capture proximity of query term occurrences in documents include . proximity score models ) the minimum distance between query terms as used in tao and zhai (cf. section . . ): mindist(ti, tj,d) = min{|i − j| : pi(d) = ti ∧ pj (d) = tj}, where mindist(sea,song,d) = | − | = , ) the distance of average positions of ti and tj in d: diff avg pos(ti, tj,d) = | ∑ pi(d)=ti i tf(ti,d) − ∑ pj (d)=tj j tf(tj,d) |, where diff avg pos(sea,song,d) = | + + + + − + | = | − | = . , ) the average distance between all occurrences of ti and tj in d: avg dist(ti, tj,d) = ∑ i∈pd(ti) ∑ j∈pd(tj ) |i − j| |pd(ti)| · |pd(tj )| , where avg dist(sea,song,d) = ( + )+( + )+( + )+( + )+( + ) · = . , ) the average of the shortest distance between all occurrences of the least frequently occurring term ti and any occurrence of the other term tj : avg min dist(ti, tj,d) = ∑ i∈pd(ti) min{|i − j| : j ∈ pd(tj )} |pd(ti)| , where avg min dist(sea,song,d) = ( − )+( − ) = , ) the smallest average distance avg match dist(ti, tj,d) when each term occurrence has at most one matching distinct term occurrence while there may be two partner term occurrences ti for some j ∈ pd(tj ) in avg min dist. for avg match dist, every occurrence of the least frequently occurring term of the term pair in the document has to be paired with a distinct occurrence of the more frequently occurring term of the term pair such that the total distance between the two terms is minimized. to calculate avg match dist(sea,song,d), either song or song can be paired with sea , but not both of them; consequently, avg match dist(sea,song,d) = ( − )+( − ) = or avg match dist(sea,song,d) = ( − )+( − ) = , and ) the maximum distance between two adjacent occurrences of ti and tj , max dist(ti, tj,d) = max{j − i : (i,j) ∈ qadj,d({ti, tj}) ∧ pi(d) �= pj (d)}, where max dist(sea,song,d) = − = . another way to implicitly measure proximity uses term frequencies of ti and tj in d which comes in the variants ) sumtf(ti, tj,d) = tf(ti,d) + tf(tj,d), where sumtf(sea,song,d) = + = , and . learning to rank ) prodtf(ti, tj,d) = tf(ti,d) · tf(tj,d), where prodtf(sea,song,d) = · = . high sumtf and prodtf values increase the probability of closer occurrences for the given term pair (ti, tj ) in document d. other approaches capture information about the entire query (in our example, q = {sea,shell,song}) by ) the length of the shortest document part that covers all query term occurrences (corresponds to tao and zhai’s span(d,q) measure, cf. section . . ) fullcover(d,q) = max(pd(q)) − min(pd(q)) which is fullcover(d,{sea,shell,song}) = − = in our example, or ) the length of the shortest document part that covers each query term that occurs in d at least once (also employed by tao and zhai as described in section . . ), mincover(d,q) = min{max(p ′) − min(p ′)|td(p ′) = td(pd(q))}. in the example mincover(d,{sea,shell,song}) = − = . normalization measures in use include ) the length of the document under view ld, and ) the number of unique query terms in document d, qt(q,d) = |td({ , . . . , ld}) ∩ q| which is in our example. cummins and o’riordan use genetic programming (gp) to learn good scoring mod- els that combine a subset of the measures presented above. poli et al. have published a guide to gp [plm ] that presents an introduction to gp but also advanced techniques in the field. they describe that gp randomly creates an initial population of programs and evolves them from generation to generation using a set of primitive modification operations. all programs are executed and only the best fitting programs per gener- ation survive and are modified using genetic operations to form the candidate set for the next generation. in gp, the primitive modification operations are crossover (i.e., randomly chosen parts of two parent programs are combined), and mutation (i.e., a randomly chosen part of a parent program is randomly changed). when a solution is acceptable or a stopping criterion is reached (e.g., the number of generations exceeds a threshold), the so-far best program is returned as a solution. solutions are repre- sented using trees. each tree (genotype) consists of two types of nodes, operators (i.e., functions) or operands (i.e., terminals). cummins and o’riordan run gp six times with an initial population of , programs for generations and use an elitist strategy which copies the best solution of a . proximity score models generation to the next generation. they employ three constants for scaling ({ , , . }) and seven functions (+,−, ·,/,√,square(), log()) during evolution with the goal to maximize the map metrics performance. given an n-term query {t , . . . , tn}, the authors represent documents as n × n ma- trices, where the diagonal entries are some tf-idf measure w(ti) per term ti, and the non-diagonal entries are proximity scores proxv(ti, tj ) for pairs of query terms (ti, tj ), where v denotes the proximity score variant: score(d,q) = ∑ ti∈td(pd(q)) ∑ tj∈td(pd(q)) { |w(ti)| if i = j |proxv(ti, tj )| if i �= j . the three best proximity functions (from the six runs) are coined prox , prox , and prox (due to double entries for each query term pair (i.e., there are entries in the document matrix for (ti, tj ) and (tj, ti)), the learned function is twice the value produced by the proximity function): · prox (ti, tj,d) =log( mindist(ti, tj,d) ) + · prodtf(ti, tj,d) avg dist(ti, tj,d) + √ mindist(ti, tj,d) · prox (ti, tj,d) =(((( log(fullcover(d,q)) mindist(ti, tj,d) + sumtf(ti, tj,d) ) · mindist(ti, tj,d) − . ) /mindist(ti, tj,d) + log( . ) + prodtf (ti,tj ,d) avg dist(ti,tj ,d) . )/mindist(ti, tj,d)) − . · prox (ti, tj,d) =(( · log( mindist(ti, tj,d) ) + log(prodtf(ti, tj,d) + mindist(ti, tj,d) ) + mindist(ti, tj,d) + prodtf(ti, tj,d) sumtf(ti, tj,d) · qt(q,d) )/qt(q,d)) + prodtf(ti, tj,d) avg dist(ti, tj,d) · mindist(ti, tj,d) the authors use scorees and a scorebm variant as baselines (cf. section . for details); the term weighting scheme scorees (cf. section . ) is linearly combined with the learned proximity score. an additional proximity-enhanced baseline is scorees combined with mindist as proximity function as used by tao and zhai (cf. sec- tion . . ). . system-oriented comparison of implementation ef- forts per scoring model this subsection aims at reviewing the required implementation effort for each of the scoring models we have presented in chapter . table . gives just a rough overview of the components needed by each scoring model (with additional remarks in the cap- tion of the table). as content scores which do not use proximity information, bm variants, lnu.ltc, es, unigram lms (non-smoothed, jelinek-mercer, and dirichlet prior . system-oriented comparison of implementation efforts per scoring model smoothed), and kl-divergence models do not need materialized term position lists. all presented proximity scoring models can be implemented with term position indexes ex- cept uematsu et al.’s approach [uif+ ] that uses sentence-level term indexes. while all presented linear combination scoring models use avgdl and ld information, most non-linear combination scoring models only use ld. the presented learning to rank and language model approaches do not incorporate idf values, the remaining approaches employ some form of idf. ctf values are only used by metzler and croft [mc ] as well as de kretser and moffat [dkm , dkm ]: while the first uses ctf for terms, phrases, and unordered windows, the latter uses ctf only for terms. monz’ scoring model [mon ] is the only model that makes use of the collection-related dt and avgdt values. some variants of the scoring models presented in the original papers may require more features than the ones listed in table . . we will now provide more details for some scoring models but exclude tuning parameters from our descriptions as we consider them known after training the respective scoring model. while rasolofo and savoy’s approach [rs ] considers all query term occurrences in small text windows, büttcher et al.’s approach [bc , bcl ] only considers adjacent query term occurrences in unrestricted text windows. determining those query term occurrences can be implemented using term position lists. for each term, uematsu et al.’s sentence-level scoring model [uif+ ] needs to index the term occurrences on a sentence-level to compute the number of sentences in a document where all query terms co-occur. monz’ approach [mon ] can be implemented using term position lists that help to determine matching spans and minimal matching spans, respectively. de kretser and moffat [dkm , dkm ] use term positions to determine a score for a given document at a given position: to this end, the positional distances between the scored position and positions of query term occurrences are taken into account. song et al.’s approach [stw+ ] relies on term position lists to segment documents into espans and uses dmax as a maximum width of espans. in some settings, mishne and de rijke [mdr ] employ a tag-related weight which is proportional to the number term occurrences within a certain element of an html document (e.g., body, anchor text or title). term positions are needed to determine phrases and proximity term occurrences in a complete document or a given tag scope of a document, respectively. lv and zhai’s approach [lz ] and zhao and yun’s approach [zy ] require term position information to compute kernel values for any position in a document and to compute the proximate centrality of query terms, respectively. the required implementation effort for the presented learning to rank approaches is highly dependent on the kind of features in use. analogously to song et al.’s approach [stw+ ], svore et al. [skk ] segment documents into espans using term position lists. the authors can plug a wide choice of different features which influence the required implementation effort in their scoring model. if the model employs formatting features, information about sentence and para- graph boundaries, html markup information needs to be stored for each document. if the model uses third party phrase features, it requires lists of important phrases which . proximity score models may not be publicly available. using λbm features requires knowledge about doc- uments’ body content lengths, λbm - features require tf and df values for bigrams in documents. the implementation effort for metzler and croft’s approach [mc ] is dependent on the form of cliques required for scoring. for cliques handling phrases or unordered occurrences of query terms in windows of a given size, one needs to know tf and ctf values for phrases and unordered occurrences of query terms in text windows of a given size, respectively. deriving those values may be realized using term positions indexes. materializing tf and ctf values for phrases and unordered occurrences of query terms in text windows is usually only doable for tiny document collections or restricted sets of phrases. otherwise the required disk space may quickly become prohibitively large. . system-oriented comparison of implementation efforts per scoring model m e th o d c o ll e c ti o n -r e la te d d o c u m e n t- re la te d a v g tf a v g d l a v g d t l c ,d t id f (t ) c tf (t ) df (t ) te rm p o s. se n te n c e p o s. tf (t , d ) l d d t( d ) b m x id f x x x l n u .l tc (m o n z ) x x id f x x e s (c u m m in s a n d o ’ r io rd a n ) x x x x x u n ig ra m l m x x j e li n e k -m e rc e r sm o o th in g x x x d ir ic h le t p ri o r sm o o th in g x x k l -d iv e rg e n c e (t a o a n d z h a i) x x x n -g ra m l m (n > ) x t = n -g ra m x r a so lo fo a n d s a v o y x id f x x b ü tt ch e r e t a l. x id f x x u e m a ts u e t a l. x id f x x m o n z x t a o a n d z h a i( w it h o u t k l / b m ) x x d e k re ts e r a n d m o ff a t x x x s o n g e t a l. x id f x x m is h n e a n d d e r ij k e + id f x x x l v a n d z h a i x x z h a o a n d y u n x x x x s v o re e t a l. x x m e tz le r a n d c ro ft x x x x c u m m in s a n d o ’ r io rd a n x x x t ab le . : o ve rv ie w : f ea tu re s u se d in ea ch sc or in g m od el . a d d it io n al re m ar ks : n ee d s al so th e nu m b er of d oc u m en ts n in th e co ll ec ti on , re qu ir es ct f an d tf if je li n ek -m er ce r or d ir ic h le t p ri or sm oo th in g ar e u se d , d et er m in es th e se t of fe at u re s d ep en d en t on th e em p lo ye d se tt in g (e .g ., df an d tf fo r u n ig ra m s/ b ig ra m s, re sp ec ti ve ly p lu s li st s of im p or ta nt p h ra se s, et c. ), m ay u se tf va lu es n ot on ly fo r te rm s b u t al so fo r n -g ra m s an d u n or d er ed oc cu rr en ce s of n -g ra m te rm s, an d ’s se t of fe at u re s m ay d iff er d ep en d en t on th e le ar n ed p ro xi m it y sc or e. chapter benchmarks . introduction when users look for information, they are driven by an information need. an infor- mation need of a user might be: information whether she shall consume black tea or coffee if she suffers from high blood pressure. to represent this information need, users try to formulate queries which usually contain keywords likely to occur in documents that may satisfy the information need, e.g., q={coffee, black, tea, effect, high, blood, pressure}. in order to compare the retrieval quality of different search engines that provide result lists as answers to queries that express users’ information needs, various initiatives have developed test beds for different application scenarios. a test bed consists of a document collection, a set of information needs expressed as topics, and a set of relevance assessments which maintain for each topic a list of items judged according to their relevance to the information need. relevance assessments can be binary-level (i.e., a result is either relevant or non-relevant) or multi-level (e.g., a result is non-relevant, marginally relevant, mostly relevant, or definitely relevant). for classical text retrieval, the granularity of results is typically document-level and the relevance is thus assessed with respect to the complete document while for xml retrieval, results may be parts of the document such as elements or passages whose relevance is also assessed. relevance is always assessed with respect to the user’s information need, not to a query. that means that a result is considered relevant iff it contains some information related to the user’s information need. mere occurrence of the keywords from the query in a result is not sufficient to render the result relevant. retrieval results are evaluated using various retrieval quality metrics. in the following, we will describe two popular evaluation initiatives for text and xml retrieval and two less popular, niche representatives for japanese language and medical search; all of them have in common to provide the means to compare the performance of different systems. after that we will give a detailed description of performance metrics which express the performance of a system under consideration. . benchmarks . initiatives . . the trec initiative and selected test beds the u.s. nist (national institute of standards and technology) started their text retrieval conference (trec) efforts in . the first trec workshop took place in and has been run annually since then. it provides a forum for ir researchers to compare their systems to those of others in various areas of ir. a report about the economic impact of the trec program can be found at http://trec.nist.gov/ pubs/ .economic.impact.pdf and contains much of the information briefly sum- marized in the following. when nist started their trec effort, they aimed at fixing two problems in ir, namely the lack of document collections and of methodologies to enable a standardized comparison of ir systems. they helped to put evaluation efforts into more realistic scenarios by creating many new, large test collections: test collec- tions used for the first trec in contained already approx. , documents compared to a size of , documents for the largest commonly used collection before. the collection sizes continuously increased to adjust to the growing web and more pow- erful machines: in the gov collection contained approx. million documents ( gb), and the most recent clueweb collection used for the trec web tracks and consisted of more than billion documents ( tb). trec helped to develop standardized ir evaluation methods by providing document collections, sets of topics and relevance assessments (which documents are relevant to a given query) to compare ir systems in a standardized manner. test collections are available not only for established tasks such as ad hoc retrieval but also for newer areas such as video retrieval and spam detection. trec distributes research results and makes them also available to people not participating in trec. evaluation techniques and formats used in trec inspired a number of other workshops and programs. trec runs multiple tracks dedicated to particular areas in ir. past trec tracks are listed at trec.nist.gov/tracks.html and include the blog track (last run in ), cross-language track (in ), enterprise track, filtering track (last run in ), genomics track (last run in ), hard (high accuracy retrieval from documents, last run in ), interactive track (last run as adjunct to the web track ), million query track (last run in ), novelty track (last run in ), question answering (qa) track (last run in ), relevance feedback track, robust retrieval track (discontinued after ), spam track (last run in ), terabyte track (last run in ), video track (last run in , starting there was an independent evaluation named trecvid with a workshop taking place), and the former web track (last run in ). in , tracks encompassed the chemical ir track, crowdsourcing track, entity track, legal track, medical records track, microblog track, session track, and a new web track (started in ). the million query track used a large number of incompletely judged queries and aimed to find out whether this is better than the traditional trec pooling approach. the robust track used difficult queries and focused on individual topics’ retrieval . initiatives quality rather than optimizing the average effectiveness. the web track used a web collection to perform search tasks on it: the topic distillation task tried to find relevant pages desirable for inclusion in a list of key pages. the large web task used , search log queries from alta vista and electric monk [haw ]. the ad hoc task and small web task in trec- used the same topic set to find out how web data differs from ad hoc data [vh ]. the terabyte track used a significantly larger collection than used for previous trec evaluations and aimed to find out whether the evaluation scales. table . shows an overview of selected test beds in the context of trec which include tracks/tasks in trec, a reference to the employed document collection, and the topic sets. we will now describe some trec collections that are either used in experiments later in this thesis or have been used in the original papers that introduced the methods in chapter . the trec and trec -cr (a.k.a. trec- ) collection: trec disk contains about , documents (approx. mb, avgdl= . ) from the congres- sional record of the rd congress (cr), about , documents (approx. mb, avgdl= . ) from the federal register in (fr), and about , documents (approx. mb, avgdl= . ) published in the financial times from to (ft). trec disk contains about , documents provided by the foreign broad- cast information service (approx. mb, avgdl= . ) (fbis) and about , randomly selected los angeles times articles from and (approx. mb, avgdl= . ) (la times). the information given here has been taken from http: //www.nist.gov/srd/nistsd .cfm (trec disk ) and http://www.nist.gov/srd/ nistsd .cfm (trec disk ) where the disks can also be ordered. while the trec collection is approx. , mb in size, the trec -cr (a.k.a. trec- ) collection’s size is only about . gb as it does not contain the data from the congressional record of the rd congress. average document lengths for the subcollections have been mentioned in [vh ] and have been computed without term stemming and without stopword removal. according to [vh ] trec -cr consists of , documents at an avgdl of . , and after stopword removal of . . while trec disks and have been used to process the ad hoc topics in trec- , trec -cr has been used for the trec- web track ad hoc task and the trec- and trec- robust track. trec disks and (plus the complete tipster collection) have been used in the qa track in trec- and trec- . the aquaint collection: the information presented here can be found at http: //www.ldc.upenn.edu/catalog/docs/ldc t /. the aquaint collection con- sists of newswire text data in english from three sources: the xinhua news service from china (january –september ) (xie), the new york times news service (nyt), and the associated press worldstream news service (june –september ) (apw). all articles are sgml-tagged text data presenting the series of news stories. there is a single dtd available for all data files in the corpus. the corpus . benchmarks was prepared by the linguistic data consortium (ldc) for the aquaint project to be used by nist for evaluations. the data files are about gb in size and contain approx. million words. the aquaint collection has been used for the trec- qa track main task, and for the trec- robust track. the tipster collection: the tipster collection (http://www.ldc.upenn. edu/catalog/catalogentry.jsp?catalogid=ldc t a) comes on three disks and contains articles from the wall street journal ( – ) (wsj - ) ( , doc- uments, approx. m words), federal register ( and ) (fr - ), associated press ( – ) (ap - ) ( , documents, approx. m words), information from the computer select disks copyrighted by ziff-davis ( – ) (ziff - ) (approx. m words), san jose mercury news ( ) (approx. m words), u.s. patents ( – ) ( mb in size), and department of energy abstracts (doe) (approx. m words) . in total it contains approx. million words in over , documents with . gb of text (http://www .parc.com/istl/projects/ia/papers/ sg-sigir /sigir .html). while the tipster disks and have been used to evaluate the ad hoc topics in trec- to trec- , tipster disks and have been used to process the ad hoc topics in trec- , tipster disk (plus trec disk ) to process the ad hoc topics in trec- . the complete tipster collection (plus trec disks and ) has been used in the qa track in trec- and trec- . the vlc collection: the vlc collection is about gb in size and contains . million web pages which are part of a web crawl from carried out by the internet archive. it has been described in detail in [hct ] and has been used for the large web task of the trec- web track. the wt g collection: the wt g collection is a gb sized subset of the larger vlc collection and contains , documents. details can be found in [hvcb ]. the collection has been used for the small web task of the trec- web track. the wt g collection: the wt g collection (http://ir.dcs.gla.ac.uk/test_ collections/wt g.html) consists of , , english web documents crawled from , servers and is about gb in size. it is the successor of the wt g collection and contains , inter-server links (within the collection). own experiments using the galago parser have resulted in avgdl= . and after stopword removal avgdl= . . according to [bch a], which contains a lot of information about the construction of the wt g corpus, the corpus was created to perform repeatable retrieval experiments which model web search better than any previously available test collection. it has been used as document collection for the web track in trec- and trec- . the .gov collection: the .gov collection is a trec test collection (http:// ir.dcs.gla.ac.uk/test_collections/govinfo.html) which is a crawl of .gov (u.s. governmental) web sites from early . in total it contains , , documents (of . initiatives which , , are html files) that have been truncated to a maximum size of kb each (reducing the size from . gb to . gb). this collection has been used for the web track, topic distillation task from trec- to trec- . the gov collection: the gov collection is a trec benchmark collection in- tended for use in the terabyte track (http://ir.dcs.gla.ac.uk/test_collections/ gov -summary.htm). it was crawled using nist hardware and network. this crawl from early of .gov (u.s. governmental) web sites has an uncompressed size of approximately gb and consists of , , documents (out of which , , are html, , , pdf, , plain text, , ms-word, postscript files) that have been truncated to a maximum size of kb each. our experiments with the galago parser have resulted in avgdl= . , and after stopword removal avgdl= . . this collection which entails times more documents than the .gov collection has been used for the terabyte track, ad hoc task in trec- to trec- , and for the terabyte track, efficiency task in trec- . the clueweb collection: the clueweb dataset was created by the lan- guage technologies institute at carnegie mellon university (cmu) and consists of , , , web pages in languages (http://boston.lti.cs.cmu.edu/data/ web -bst/). it was crawled in january and february and encompasses tb of uncompressed data. the dataset is used by several tracks of the trec conference. people participating in the trec web track often restrict the collection first to the , , english documents (http://boston.lti.cs.cmu.edu/clueweb /wiki/ tiki-index.php?page=dataset+information#record_counts), from which they chose the % documents with the smallest probabilities to be spam according to the water- loo fusion spam ranking (http://plg.uwaterloo.ca/~gvcormac/clueweb spam/). the resulting document set has an uncompressed size of about tb. in our own exper- iments with the remaining , , documents and our own parser, after stemming and stopword removal, the avgdl value was . . the clueweb collection has been used as a document collection for the web track, ad hoc task in trec- to trec- . . . inex and selected test beds the second initiative we describe is the initiative for the evaluation of xml retrieval (inex) which exists since . it is the leading workshop on xml retrieval and takes place annually. in contrast to trec where nist is responsible for providing the test bed, in inex only the document collection is provided and participants are asked to formulate topics and judge results for relevance. like in trec, the test collections employed in inex have grown in size over the years to catch up with data growth in the real world, more powerful machines and to pose new challenges to the participants. while the initial inex ieee collection from consisted of about , articles with million elements at a size of mb, and . benchmarks trec year track/task collection topics trec- ad hoc topics tipster disks + - trec- ad hoc topics tipster disks + - trec- ad hoc topics tipster disks + - trec- ad hoc topics tipster disks + - trec- ad hoc topics tipster disk + - trec disk trec- ad hoc topics trec - trec- ad hoc topics trec - trec- web track, ad hoc ad hoc: trec -cr - and small web topics smallweb: wt g trec- web track, large web task vlc - trec- web track wt g - trec- web track, ad hoc topics wt g - trec- web track, gov - topic distillation task trec- web track, gov td -td topic distillation task trec- web track, gov topics from wt - to wt - topic distillation task trec- web track, ad hoc task clueweb wt - to wt - trec- web track, ad hoc task clueweb - trec- million query track gov - trec- robust track trec -cr topics from - trec- robust track trec -cr - (ad hoc topics trec –trec ), - (new topics trec- robust track), - (new topics trec- robust track) trec- robust track aquaint topics from - trec- terabyte track, ad hoc task gov - trec- terabyte track, ad hoc task gov - trec- terabyte track, ad hoc task gov - trec- terabyte track, gov - efficiency task trec- qa track tipster+trec - trec- qa track, main task tipster+trec - trec- qa track, main task aquaint - table . : some trec test beds was increased to approx. , articles, million elements with mb in size in , the change to a wikipedia collection in brought more than . million xml documents in languages (out of them about , english documents) at a size of approx. gb. the current wikipedia collection in use increased the size to more than gb with more than . million xml documents and . billion xml elements. inex also offers multiple tracks (https://inex.mmci.uni-saarland.de/) to their participants. past tracks include the heterogeneous collection ( – ), relevance feedback ( – ), natural language ( – ), xml multimedia ( – ), use case studies (only in ), xml entity ranking ( – ), efficiency ( and ), book search ( - , renamed to book and social search in ), ad hoc retrieval ( – ), and xml mining ( – ) tracks. in , tracks encompass the book and social search, interactive, relevance feed- back, data-centric, question answering (qa), web service discovery, and the newly introduced snippet retrieval track which replaces the former ad hoc track. mostly for the ad hoc track, inex uses two types of queries: co (content-only) queries and cas (content-and-structure) queries. while co queries are keyword queries without struc- tural information as used in text retrieval, cas queries impose structural constraints which position keywords into a structural context. we will now describe the inex collections used over the years for the ad hoc track. . initiatives the inex ieee collection – and its extension from : the initial inex collection from consisted of , marked-up articles with million elements, taken from ieee journals between and , mb in size, and de- scribed in [lt ] which we will summarize here. the collection got extended in by , new ieee articles published between and , resulting in , articles with million elements and a size of mb. a typical article consists of front matter, body, and back matter. the front matter contains metadata (e.g., title, author, publi- cation information, and abstract). the body contains text embedded in its structural information: sections, sub-sections, and sub-sub-sections that start with a title element followed by paragraphs. the content is extended by references (citations, tables, and figures), item lists, and layout (e.g., emphasised, bold text). the back matter contains bibliography and information about the authors. this collection has been used for the ad hoc track which was the only inex track in and , and for the interactive, relevance feedback, and natural language track in . the inex wikipedia collection – : the inex wikipedia collection used for the inex workshop from to consists of , , wikipedia-based xml documents in languages with a total size of about gb. the english part consists of , english documents which are about , mb in size. the average size of an english document is , bytes, the average depth of a node in an xml document tree is . , and the average number of elements in a document is . . more detailed information can be found in [dg a] and [dg b]. as the collection is highly irregular, there is no dtd available for this collection. this collection has been used for the ad hoc track from - , the inex efficiency track , and the entity ranking track and . the english part of this inex wikipedia collection with more than , images at approx. gb size has been used for the multimedia track in while the english part with tagged articles and a size of approx. gb has been used as entity corpus for the entity ranking track in and . the inex wikipedia collection from : this wikipedia collection has been newly introduced in (http://www.mpi-inf.mpg.de/departments/d /software/ inex/) and was created at max-planck-institute and saarland university. it consists of . gb xml-ified wikipedia articles, with , , articles (which is four times the number the english articles in the former wikipedia collection) and . billion elements. the collection is annotated with the -w - version of yago [ssk ]. parsing the document collection using the galago parser resulted in avgdl= . , and after stopword removal in avgdl= . . in , the inex efficiency track, the link-the-wiki track, and the question answering track have used this collection. . benchmarks . . other initiatives the irex project the irex (information retrieval and extraction exercise) project is an evaluation project for information retrieval and information extraction in japanese. [si ] reports on this project, briefly summarized below: the project lasted from may to septem- ber and ended with an irex workshop held in tokyo. more information including the data and tools used for the project can be found at http://nlp.cs.nyu.edu/irex/. the irex project had two tasks, namely the information retrieval task (ir) and the named entity task (ne). we omit the description of the ne task as the evaluation in related work presented in chapter only deals with the ir task. there were topics in the ir task and participants were asked to submit their top- results for each topic. the employed irex ir collection consists of about , mainichi newspaper articles written in japanese that were published in and . ohsumed a description of the ohsumed test bed is given in [hblh ] and http://ir.ohsu. edu/ohsumed/ohsumed.html, its characteristics are briefly summarized in the following. the ohsumed test collection is a subset of medline, a bibliographic database for medical publications maintained by the national library of medicine and about mb in size. medline consists of more than million references starting in , and grows by about , references per year. the ohsumed collection contains , references, a subset of medical journals covering the years to . the generally short queries contain a brief statement about the patient and an information need. relevance assessments distinguish two levels of relevance, namely definitely relevant (dr) and definitely or possibly relevant (d+pr). the test bed con- tains physician-generated queries during patient care with at least one document considered definitely relevant. . measures in order to assess the retrieval quality of search engines, the ir community has devel- oped several measures which can be classified in measures for text/document retrieval and measures for xml retrieval. relevance is always assessed with respect to the user’s information need, not to a query. that means that a document is considered relevant iff it contains some infor- mation related to the user’s information need. mere occurrence of the keywords from the query in a retrieved document is not sufficient to render the document relevant. . . measures for text/document retrieval query processing in a search engine returns a ranked list of results that are assessed using various measures; two of the most prominent measures are precision and recall. . measures for these measures, the order of (the first n) entries in the ranked list of query results does not influence the value of the measure such that the ranked list can also be viewed as a result set. definition . . . (precision at rank n) given a set of the first n items in = {i , . . . , in} retrieved as answer to query q, and the set of items r considered relevant to q, precision at rank n is defined as p@n = |r ∩ in| |in| and measures which fraction of the retrieved items in in is actually relevant to the query. definition . . . (r-precision) given the set of items r considered relevant to a query q, and a set of retrieved items i|r| = {i , . . . , i|r|} retrieved as answer to q, r-precision is defined as r − precision = |r ∩ i|r|| |i|r|| and measures which fraction of the first |r| retrieved items is actually relevant to q. definition . . . (recall) given a set of n items in = {i , . . . , in} that represent a query result, and the set of items r considered relevant to q, the recall is defined as recall = |r ∩ in| |r| and describes to which extent the items considered relevant have been retrieved. sometimes, for example in the area of question answering, it is good enough to know whether there is at least one relevant answer among the first n results. a simple measure that can be used for this purpose is answer-at-n. definition . . . (answer-at-n (a@n)) given a set of the first n items in = {i , . . . , in} of a query result, and the set of items r considered relevant to q, the answer-at-n value is defined as a@n = min( , |in ∩ r|). therefore, a@n = if there is at least one relevant result among the first n results and otherwise. while the evaluation measures just described ignored the order of the ranked result lists, the evaluation measures we will describe in the following take the order of the ranked result lists into account. thus, the order of the retrieved results has an impact on the value of the measures. . benchmarks definition . . . (ap (average precision)) given a ranked result list rl of re- trieval results for a query q and the set of results r = {d′ , . . . ,d′x} in rl considered relevant, the average precision (ap) is defined as ap(q,rl) = |r| ∑ d′i∈r p@rank(d′i,rl), where rank(d′i,rl) is the rank of d ′ i in rl. the ndcg measure (normalized discounted cumulative gain) has been proposed in [jk ] and supports non-binary relevance assessments: relevance assessments have more than two relevance levels, such as non-relevant, marginally relevant, relevant, and highly relevant. each relevance level is mapped to a relevance value which is a number such as highly relevant→ , relevant→ , marginally relevant→ , and non-relevant→ . as the original work computes the ndcg value in an algorithmic way and we want to keep the definition compact, we adapt the variant presented in [mrs ] to our notation. definition . . . (ndcg at rank k) let rel(q,d) be the relevance value attributed to document d for query q, rl the ranked list for query q, and rlk the kth result in rl. the ndcg value for q at rank k is defined as ndcg(q,k) = zq k∑ r= rel(q,rlr) − log( + r) , where zq is a normalization factor such that a perfect ranked result list’s ndcg at rank k is . the rr (reciprocal rank) measure quantifies when the first relevant document is encountered in a result list. definition . . . (rr (reciprocal rank)) let rlq be a ranked list, and rq the set of relevant items for query q. then the reciprocal rank (rr) for q is defined as rr(q) = minrank(rlq ∩ rq) , where minrank(rlq ∩ rq) is the minimum rank of a relevant document in rlq. if rlq ∩ rq = ∅ (i.e., no relevant results are retrieved), minrank(rlq∩rq) is set to . common measures that are based on mean values for a set of topics (query load) are map (mean average precision) and mrr (mean reciprocal rank). while map averages over ap values, mrr averages over rr values: definition . . . (map (mean average precision)) given a query load q = {q , . . . ,qm} and a ranked result list of retrieved results for each query in q, rlj being the ranked list for query qj and rj the set of relevant items for query qj . then the mean average precision (map) for q is defined as map(q) = |q| m∑ j= ap(qj,rlj ). . measures the mrr (mean reciprocal rank) averages over the reciprocal ranks of the first relevant retrieved result for each query in a query load. definition . . . (mrr (mean reciprocal rank)) given a query load q = {q , . . . ,qm} and a ranked result list of retrieved results for each query in q, rlj being the ranked list for query qj and rj the set of relevant items for query qj . then the mean reciprocal rank (mrr) for q is defined as mrr(q) = |q| |q|∑ j= minrank(rlj ∩ rj ) , where minrank(rlj ∩ rj ) is the minimum rank of a relevant document in rlj . if rlj ∩ rj = ∅ (i.e., no relevant results are retrieved), minrank(rlj∩rj ) is set to . . . measures for xml retrieval in [kpk+ ] kamps et al. describe the official retrieval effectiveness measures used for the ad hoc track at inex . while in earlier years only xml elements were allowed for retrieval, inex allowed arbitrary document parts, i.e., xml elements and passages. the focused task requires a ranked list of non-overlapping document parts (i.e., there is no document part in the ranked list which is enclosed or partially overlaps with any other document part from the ranked list). submitting organizations are asked to provide for each query q ranked lists of , non-overlapping document parts lq that are supposed to be most focused and relevant. the amount of relevant information retrieved is measured in terms of the length of relevant text retrieved. since , inex uses highlighting to get relevance assessments for the topics. therefore, the evaluation is based on the number of relevant highlighted characters, not documents. pr is the document part assigned to rank r in the ranked list lq of document parts returned by a retrieval system for a topic q . size(pr) is the total number of characters contained in pr and rsize(pr) the total number of characters in the highlighted relevant text part of pr. trel(q) denotes the total number of characters in all highlighted relevant text for q. the precision at rank r is defined as p[r] = ∑r i= rsize(pi)∑r i= size(pi) and measures which portion of the retrieved characters is relevant. the recall at rank r is defined as r[r] = ∑r i= rsize(pi) trel(q) the topic may be notationally omitted if it is clear from the context which topic we are considering. . benchmarks and measures to which extent the retrieved characters cover characters from text con- sidered relevant. both precision and recall are similar to the earlier definitions but use characters instead of documents as evaluation units. the interpolated precision at recall level x for query q is defined as ip[x](q) = { max{p[r] : r[r] ≥ x} : if x ≤ r[|lq|] : else , where r[|lq|] is the maximum recall over all retrieved documents lq. it considers the maximum achievable precision after the returned results have achieved at least recall level x. if the recall level x exceeds the maximum recall level for lq, the interpolated precision drops to . the average interpolated precision measure for query q aip(q) = · ∑ x∈srl ip[x](q) builds the average over the interpolated precision at the standard recall levels srl = { . , . , . . . , . }. the mean average interpolated precision measure is defined as maip = #t · ∑ q ∈ t aip(q) and expresses the performance across a set of topics t. chapter evaluation for selected score models in the first part of this chapter (section . ) we present a lot of insightful experimen- tal results from the original papers. however, they usually compare only a few of the proximity score models surveyed in chapter . the second part of this chapter (sec- tion . ) seeks to close this gap by performing a comparative analysis of a significant set of proximity score models in a single evaluation framework with four test beds. . results from the original papers in this section, we report the main results from the original papers and describe their experimental setups. when we describe the employed test beds, we first talk about the topics with the corresponding tracks/tasks and mention the employed document collection in brackets. more information about the test beds can be found in chapter . . . linear combinations of scoring models rasolofo and savoy: rasolofo and savoy (cf. section . . ) use three web track ad hoc task test beds from trec- (trec -cr), trec- , and trec- (both wt g) with multi-keyword queries without stopwords. they compare the retrieval quality of their proposed proximity-aware model to an okapi bm baseline. proximity scores help more with early (p@ ) than with later precision. average precision values for bm and the proposed model hardly differ for which the authors give two reasons: ) proximity scores only consider term pairs in a window size of five which limits the number of documents whose scores are influenced by proximity scores and ) only the documents with the highest bm scores are scored which may rule out potentially relevant documents beyond the top- . sign tests at p< . show that their approach significantly improves in ap over the baseline when evaluating over all queries from all three test beds. considering single test beds, only for trec- , their approach significantly improves over the baseline. . evaluation for selected score models büttcher et al.: büttcher et al. (cf. section . . ) perform two rounds of experi- ments: ) they evaluate topics from the trec robust track (trec -cr) and topics from the trec terabyte track, ad hoc task (gov ). like ra- solofo and savoy, they compare their proximity-enhanced model to a bm baseline: a paired t-test shows significant improvements on gov (p@ at p< . , p@ at p< . ), but fails on trec -cr. ) they split the gov collection into ran- dom chunks which are combined to form %, %, . . . , % of the gov documents ( subcollections per size). their test bed uses the queries from trec terabyte track, ad hoc tasks and (subcollections of gov ). it turns out that the larger the document collection is, the more important the impact of term proximity scores gets for p@ and p@ values. the authors suspect, that, in large collections, it is more likely to accidentally find non-relevant documents that contain query terms; term proximity may help to find relevant ones. as the relative gain of proximity scores is higher for stemmed than for unstemmed queries, term proximity may help to find stem-equivalent terms that represent the same semantic concept. average document length and effectivity of term proximity do not seem to be related. uematsu et al.: uematsu et al. (cf. section . . ) use two test beds: topics from the trec- web track, ad hoc task (trec -cr), and ir task topics from irex (irex ir collection). they compare precision and average query processing times when evaluating queries with document-, word-, and sentence-level indexes and report index sizes. a document-level index contains only (docid, tf(term,docid)) pairs, and word-level indexes contain additional term position information. the proposed sentence-level index contains for each term t a list of docids and the number of sentences where t occurs plus sentence positions. this is used to determine, for each document, the number of sentences with co-occurrences of all query terms per document. indexes are compressed by means of dgap and v-byte encoding: due to smaller dgaps, sentence- level may compress better than word-level indexes. sentence-level indexes lead to the highest early precision values for both test beds. document-level indexes are smallest, sentence-level indexes are as effective as word- level indexes, but smaller. without positional information, document-level indexes are not as effective as the other indexes as they can only be used to compute bm scores without term proximity contributions. to index the trec -cr collection, the sentence-level index requires gb ( % larger than document-, % smaller than word-level index), for irex ir gb ( % larger than document-, % smaller than word-level index). for the trec- test bed, document- and sentence-level indexes’ query processing times are comparable and a bit faster than the word-level indexes’. for the irex ir test bed, index granularities hardly influence the query processing speed. monz: monz (cf. section . . ) uses test beds from the question answering (qa) tracks of trec- , trec- (both tipster+trec ), and trec- (aquaint) to evaluate his minimum span weighting (msw) approach against the baseline lnu.ltc. . results from the original papers he compares the percentages of questions that have at least one relevant document among the top-n results (a@n), and shows that msw outperforms the baseline on all test beds, especially for low n. the precision values decline for the trec- test bed as it contains more difficult questions and the average number of relevant documents is lower than for the trec- and trec- test beds. percentually, the precision values p@n show higher gains than for a@n at all cutoffs. for both metrics, with every test bed and at all cutoffs, the performance of msw significantly outperforms the baseline at p< . . the author fails to show a correlation between query length and average precision. tao and zhai: tao and zhai (cf. section . . ) employ five trec test beds, namely the trec- ad hoc topics (ap, fr), doe queries (doe), and trec- web track, ad hoc and small web topics (trec -cr, web g). the authors report average values of five individual proximity distance functions (considered in isolation) for relevant and non-relevant documents. ideally non-relevant documents should have higher distance values than relevant ones. it turns out that global measures (span and mincover) need a normalization as relevant documents tend to contain more query terms which span wider than in non-relevant documents. local measures (mindist, avgdist, and maxdist) perform better than global measures; mindist is likely to be the best proximity distance function on every test bed. except for fr (maybe too few queries ( ) are applicable which tends to support the null hypothesis), map values improve significantly (wilcoxon signed rank test, p < . ) for r + mindist and r + mindist over the baselines kl-divergence and bm , respectively. early precision values are better for r + mindist and r + mindist than for the base- lines. r + mindist provides similar map values as the mrf approach used by metzler and croft [mc ] (cf. section . . ). parameter sensitivity studies show that global proximity measures are less stable and accurate than local ones. simple addi- tion of kl-divergence and proximity measures cannot improve retrieval quality over kl-divergence. . . integrated score models de kretser and moffat: de kretser and moffat (cf. section . . ) compare their locality to traditional document retrieval models using the ap metric for k= , documents. they evaluate long trec- - (tipster disks + ) and short trec- ad hoc topics (tipster disks + ) on subcollections from tipster disk (ap , fr , wsj - , ziff - ), newspaper ap +wsj - , and non- newspaper fr +ziff - parts. as document retrieval baselines, they use ) the standard cosine measure (baseline ) and ) an approach which uses tf, qtf, pivoted document length normalization, and idf-normalization by maximum frequency which achieves the best overall performance in [zm ] (baseline ). for locality retrieval models, the authors test four kernel shapes with damped and non-damped height. . evaluation for selected score models for the short topics ( distinct terms on average), with a few exceptions, their locality-based retrieval models improve over baseline and the arc-shaped, damped height kernel outperforms baseline on of document collections. for the long topics ( distinct terms on average in description field), locality methods do not pay off except for fr which contains long documents where users save most time when pointed to passages by locality-based retrieval models. song et al.: song et al. (cf. section . . ) compare early and average precision of their retrieval model (newtp) to bm and rasolofo and savoy’s approach (okatp). to this end, they use the topics from the trec- web track, ad hoc task (wt g) and topics from the trec- web track, topic distillation task (.gov) as test beds. song et al. tune first on bm , then the newtp parameters using the trec- web track, ad hoc task (wt g) test bed: newtp’s term proximity scores use much larger text windows (size= ) than okatp (size= ). newtp significantly (paired t-test, p< . ) outperforms bm in terms of p@ and p@ for both testbeds. for p@ , okatp outperforms newtp which indicates that okatp brings more documents with very close term pair occurrences to the top- . for p@ , song et al.’s approach outperforms okatp and bm which indicates that newtp can handle more distant term pairs better than okatp. newtp and okatp provide similar average precision values that both outperform bm . mishne and de rijke: mishne and de rijke (cf. section . . ) evaluate the impact of phrase and proximity terms and document structure on retrieval quality with two test beds: queries from the trec- and queries from the trec- web track, topic distillation task (.gov collection). they compare five approaches which use ) single query terms from each topic as terms, no document structure (baseline), ) all term- level n-grams from a topic as phrase terms (phrases), ) phrase terms with weights proportional to term phrase frequencies in different fields (phrases-b), ) all term-level n-grams from a topic as proximity terms with fixed distance length (proximity), and ) with variable distance length (prox-v). the authors claim that using a multiple field representation for each document, phrase and proximity terms can help effectiveness and confirm mitra et al. [mbsc ] that, for single field representations, given a good basic ranking model, phrases yield little or no improvement. phrase and proximity terms often help to provide higher effectiveness the less re- strictive the variant in use (i.e., prox-v often outperforms proximity and proximity often outperforms phrases). phrases-b provides more stable results than phrases. short queries often form linguistic phrases and rather gain effectiveness by phrase and proximity terms than longer queries. those tend to consist of non-related sets of terms and may consequently suffer from a topic drift. effectiveness gains for short queries predominate - starting at a query length of four terms, the effectiveness drops. . results from the original papers . . language models with proximity components lv and zhai: lv and zhai (cf. section . . ) use four trec test beds to evaluate their positional language model (plm) approach: trec- ad hoc topics (ap - and fr), and trec- web track, ad hoc and small web topics (wt g and trec -cr). for the best position strategy (bps), they compare the effectiveness of proximity-based kernels. the kl-divergence model (with dirichlet prior smoothing) returns initial results re-ranked with plms for ≤ σ ≤ : σ ≥ does best, and gaussian kernels are usually preferable. lv and zhai claim that the gaussian kernel is superior since it is the only kernel under view whose propagated count drops slowly for small distances |i−j| (dependent terms are not always adjacent in documents), fast for moderate distances (boundary of term’s semantic scope reached), and again slowly for large distances (all terms are only loosely associated). for the multi-position strategy with a single spread σ, a gaussian kernel (with dirichlet prior smoothing) does not yield noticeable improvements over bps (k= ) such that, for one single σ, bps can be considered a robust method for document ranking. for the multi-σ strategy, plms (σp lm flexible) and document language model (σlm = ∞) are linearly combined using a coefficient γ. interpolation helps plms to be more robust and effective: the authors claim that plms represent proximity well although document-level retrieval heuristics are better represented by document lms. the plm approach performs best for small σp lm values (e.g., or ). for collections with larger avgdl values (i.e., wt g and fr), plms need more weight (i.e., a larger γ) since their document lms tend to be noisier. zhao and yun: zhao and yun (cf. section . . ) use four test beds: the title fields of the trec- ad hoc topics (ap and wsj - ), the title fields of trec- ad hoc topics (wsj - ), and the ohsumed topics (ohsumed). the compared approaches are ) the kl-divergence model, ) the kl-divergence model linearly combined with a proximity score model as used in [tz ], and ) the proposed proximity integrated language model (proxlm) with different term proximity centrality measures. the authors compare the best achievable performance of the term proximity cen- trality measures. proxsump rox performs similarly well as proxm indist and both out- perform proxavedist. ) performs better than ) on all test beds except for ohsumed whose queries are verbose. ) outperforms ) and ) in terms of precision and map and can handle verbose queries very well: for ohsumed, ) always significantly (wilcoxon signed rank test, p< . ) outperforms ) and ). the authors study how robust the approaches are if stopwords in queries are con- sidered. to this end, they use the ad hoc topics from trec- that contain at least one stopword on the collections ap and wsj - . while, in the presence of stop- words, ) is robust in terms of effectiveness, ) fails for both collections. proxsump rox used as centrality measure in ) improves over ), is robust to stopword occurrences, and superior to proxm indist. the authors claim that stopwords occur frequently in . evaluation for selected score models documents, i.e., they are likely to occur close to other query terms which may highly influence proximity centrality scores for proxm indist. . . learning to rank metzler and croft: metzler and croft (cf. section . . ) evaluate with four trec test beds: the ad hoc topics from trec- to trec- (wsj - and ap - , respectively; both part of tipster), topics from the web track, ad hoc task of trec- + (wt g), and topics from the terabyte track, ad hoc task (gov ). documents are stemmed and stopwords removed during evaluation. the full independence (fi) setting (only cliques in t) serves as a baseline for the parameter- tuned, weighted mrf models. for the sequential dependence (sd) setting (cliques in t , u, and o), the authors evaluate map values for window sizes of , , , and ∞ and tune parameters separately for each window size. it seems that the window size only matters for the gov collection: a size of (which corresponds to the average length of english sentences) performs best and outperforms ∞-sized windows. hill climbing is used for parameter tuning which starts off with the fi setting (λt = , λo=λu = ). the authors find that sd and fd significantly (paired t-test, p< . ) improve map values for all testbeds compared to fi variants. svore et al.: svore et al. (cf. section . . ) study the effect of different feature sets on effectiveness in web retrieval using stemmed english queries (up to terms) sampled from a commercial search engine’s query log. each query has on average – assigned documents with -level relevance assessments. while the training set consists of , queries (of which % are used for validation), the test set consists of , queries. the authors compare the impact of phrases and proximity terms on early ndcg values and compare ten different models: ) bm , ) train lambdarank over bm features (λbm ), ) rasolofo and savoy’s approach, ) a bigram-version of ), ) song et al.’s approach, ) λbm with bigram features, ) ) with additional espan-based rc value from ), ) an approach that uses all espan goodness features and model feature sets (espan), ) espan without formatting features, and ) espan without rd-party phrase features. espan significantly (t-test, p< . ) outperforms all other models: phrase features and -even more- formatting features are important for retrieval effectiveness. to con- sider query characteristics, the queries in the test set are split by ) length and ) popularity. for popular queries, espan significantly outperforms all other models. for short queries, removing phrase span features has only a small impact. in a full ranking model, espan outperforms the other models. the experiments are not repeatable as neither queries nor assessments are disclosed. cummins and o’riordan: cummins and o’riordan (cf. section . . ) make use of the la, fbis, and fr collections from trec disks and as test data. for each collection, the corresponding topic set is evaluated in two variants with stemming . comparative analysis for selected score models and stopword removal: ) short (title field) and ) medium length queries (title plus description fields). furthermore, topics are evaluated with the ohsumed collection (title plus description fields only). for each term-term proximity measure, for short and medium length queries sepa- rately, the average values for relevant and non-relevant documents are computed to see correlations. while average values for min dist, avg min dist and avg match dist seem to be inversely correlated with relevance (i.e., larger average values for less relevant documents), qt, sumtf, and prodtf values seem to be directly correlated with relevance (i.e., larger average values for relevant documents). genetic programming is used to find a combination of a subset of the proposed term-term proximity measures that form a learned proximity score. an ft subset of , documents from trec disk and topics (subset of ad hoc topics from trec- + ) are used as training data. scorees and a scorebm are used as baselines and linearly combined with the learned proximity score: on the training data, for es (map as fitness metric), the prox- imity score generates significant improvements for prox and prox (wilcoxon signed rank test, p< . ), for bm , proximity scores do not significantly improve the map values. an additional proximity-enhanced baseline is scorees combined with mindist as proximity function as used by tao and zhai which is not significantly better than scorees on the training data. for most test collections, prox linearly combined with scorees also significantly improves over the scorees baseline, prox still significantly improves for fbis. . comparative analysis for selected score models in section . , we have seen that the original papers present a wealth of insightful experimental results. however, they usually only compare the effectiveness of just a few of the proximity score models described in chapter . therefore, it is difficult to assess which of the scoring models provides the best retrieval quality. we seek to close this gap by performing a comparative analysis of a significant set of proximity score models in one single evaluation framework with four test beds. in our experiments, we use an open-source implementation of the mapreduce frame- work, hadoop in version . on linux. hadoop runs on a cluster of servers in the same network, where each server has cpu cores plus virtual cores through hyper- threading, gb of memory, and four local hard drives of tb each. the implementa- tion has been done completely in java . . we evaluate the retrieval quality for various parameter combinations and a set of individual scoring models. the evaluation is accelerated and partially only enabled by the distributed evaluation in the hadoop framework. for each scoring model, we have implemented a separate class which can be fully customized and plugged into our evaluation driver. each scoring model class includes a list of all parameters that are evaluated. . evaluation for selected score models there is one file per test bed which contains all information that is necessary to perform the evaluation. this encompasses the document corpus, its characteristics (such as avgdl, n, and dt), the topic sets to be evaluated, and the relevance assessments. in addition, the file specifies query readers and document parsers plus optional hadoop- related parameters to be used during evaluation; we employ the galago parser to parse the document collection. the evaluation makes use of two jobs: in the map phase of the first job, we evaluate the query load for all documents and for each configuration. (a configuration consists of one scoring model with one parameter combination.) in the reduce phase of the first job, we aggregate, for each configuration and topic, retrieval quality statistics. the second job reconciles the per-topic, per-method, and per-metric results into averages per method and metric; the work is done exclusively in the reduce phase. we will now briefly describe the various test beds we use across this section. for the web track, we evaluate the retrieval quality for the web tracks in and on the wt g collection: topics - denote evaluations with web track topics from trec- ( ), and topics - denote evaluations with the web track, ad hoc topics from trec- ( ). for the web track, we additionally show the influence of limiting the evaluated topics to those that consist of at least two query terms, namely - + and - + . this is intended to show the effects of proximity scores (which need at least two query terms to become effective). all encompasses all topics from both years (i.e., topics - ). for the robust track, we evaluate the retrieval quality of the ad hoc topics on trec disks and (without the congressional record data). while topics - denote evaluations with the ad hoc topics from trec- ( ), topics - denote evaluations with the ad hoc topics from trec- ( ). topics - evaluate using the web track, ad hoc topics from trec- ( ), - represent the new topics from the trec- robust track ( ), and - the new topics from the trec- robust track ( ). all encompasses all topics from the five years, thereby considering the result quality values from topics - and - for each run. for the ad hoc tasks of the terabyte track, we evaluate the retrieval quality on the gov collection. topics - , - , and - denote evaluations with topics from trec- ( ), trec- ( ), and trec- ( ), respectively. all encompasses all topics from the three years (topics - ). for inex, we evaluate the ad hoc track topics from and the ad hoc track topics from on the inex wikipedia collection from . all encompasses the topics from both years. in our evaluation, documents are considered relevant if they contain some characters marked as relevant. . . experimental comparison of scoring models for each test bed, we measure the retrieval quality using the ndcg@ , ndcg@ , p@ , p@ , and map retrieval metrics. stop words are removed and query terms are stemmed. for each test bed, we compare the result quality of the scoring models . comparative analysis for selected score models by büttcher et al., rasolofo and savoy, zhao and yun, tao and zhai, lv and zhai, song et al., and de kretser and moffat. furthermore, we evaluate lm with dirichlet smoothing, es, and bm as content-scores. we vary the parameters for each scoring model. for the terabyte track test bed, we can not evaluate lv and zhai’s scoring model within a reasonable amount of time due to the collection size and positional language models that need to be constructed for every position in each document. evaluation using web track test beds figures a. to a. in appendix a show the best ndcg, precision, and map values for the web track test beds. song et al.’s and büttcher et al.’s scoring models have the highest ndcg values, tao and zhai’s approach often performs similarly well. tao and zhai’s scoring model and büttcher et al.’s scoring model provide the highest precision values. song et al.’s and büttcher et al.’s scoring models perform best for the map metric. de kretser and moffat’s approach performs worse than its competitors. restricting the test beds involving topics - and - to those with at least two query terms ( - + , - + ) yields a higher overall retrieval quality, but does not influence the order of result quality among the scoring models. evaluation using robust track test beds figures a. to a. in appendix a show the best ndcg, precision, and map values for the robust track test beds. the best performing scoring models on the robust track test beds are the ones by büttcher et al., tao and zhai, and song et al.; there is no clear winner among these three models, usually they achieve similar retrieval quality values. like for the other test beds, de kretser and moffat’s approach falls behind the quality of the remaining scoring models. evaluation using terabyte track test beds figures a. to a. in appendix a show the best ndcg, precision, and map values for the terabyte track test beds. büttcher et al.’s scoring model yields the highest retrieval quality for all test beds and retrieval metrics except for - with the map metric where it performs slightly weaker than song et al.’s scoring model. for all other test beds song et al.’s scoring model performs second best. bm , rasolofo and savoy’s scoring model perform similarly, but still good. for the ndcg and precision metrics, the dirichlet smoothed language model and zhao and yun’s scoring model yield similar retrieval quality, however often slightly weaker than bm and rasolofo and savoy’s scoring model. for the map metric, zhao and yun’s model falls behind the dirichlet smoothed language model. de kretser and moffat’s scoring model is far weaker than all other scoring models. . evaluation for selected score models evaluation using inex test beds figures a. to a. in appendix a show the best ndcg, precision, and map values for the inex test beds. büttcher et al.’s scoring model yields the highest retrieval quality on all test beds ( , , and all) for all employed retrieval metrics. song et al.’s approach always performs second best. song et al.’s model outperforms bm , rasolofo and savoy, lm with dirichlet smoothing, and zhao and yun’s approach; the latter four provide a similar retrieval quality and are a bit stronger than lv and zhai’s approach. tao and zhai’s scoring model and es are similarly strong and a bit weaker than lv and zhai’s scoring model. de kretser and moffat’s approach is far behind. . . individual scoring models this subsection details the parameter settings which have been evaluated for the scoring models. to keep the evaluation manageable, in this subsection, we restrict ourselves to evaluating all topics available for the test beds (i.e., topic set all). in the result tables we abbreviate the four resulting test beds by web, robust, terabyte, and inex. bm : for the (disjunctive) evaluation of the bm scoring model, we vary the parameters k and b: k ∈ { . , . , . , . , . , . , . , . , . , . , . , . } ( vari- ants), b ∈ { . , . , . } ( variants), and variants of idf (idf and idf ). k is always set to k . therefore, in total · · = runs are evaluated per test bed. while for the map metric, smaller choices of b ( . and . ) work good for web and inex, terabyte prefers larger b ( . and . ). for robust, there does not seem to be a consistent best choice for b among the best parameter settings. k should be small or medium-valued: k ≤ yields the best results for web and robust, . ≤ k ≤ . for terabyte, and . ≤ k ≤ . for inex. the choice of the idf variant does not seem to be important for the retrieval quality. for the ndcg@ metric, results tend to be better if k is chosen larger, i.e., k ≥ . for web, . ≤ k ≤ . for robust, k ≥ . for terabyte, and . ≤ k ≤ . for inex. good choices for b are similar as for map. optimize ndcg@ optimize map collection k k b idf ndcg@ k k b idf map web . . . idf . . . . idf . robust . . . idf . . . . idf . terabyte . . . idf . . . . idf . inex . . . idf . . . . idf . table . : bm : optimal tuning parameter setting with ndcg@ and map values. table . contains the optimal tuning parameter settings for bm with ndcg@ and map values for all test beds. . comparative analysis for selected score models büttcher et al.: as described in section . . , the proximity score part of büttcher et al.’s scoring function is defined as pscore(d,q) = ∑ t∈q min{ , idf (t)} accd(t) · (k + ) accd(t) + k . we evaluate the effects of shrinking the influence of the pscore in büttcher et al.’s scoring function, substituting min{ , idf (t)} by min{minidf,idf (t)}, where minidf ∈ { , . , . , . . . , . , . , . , } ( variants). for the cscore part (i.e., a bm score variant), we evaluate the bm tuning parameter combinations as described in the paragraph dealing with bm . thus, we evaluate · = , runs in total per test bed. to achieve high map values, smaller values of b like . or . and relatively small values for k are preferable on all test beds: on terabyte and inex . ≤ k ≤ . perform best, on robust . ≤ k ≤ . , and on inex . ≤ k ≤ . . to achieve high ndcg@ values, smaller values of b usually work well: b= . performs best for web and inex, and b ∈ { . , . } for robust test beds. in contrast, terabyte achieves high ndcg@ values for larger values of b, i.e., b ∈ { . , . }. medium-size choices of k perform well: . ≤ k ≤ . for web, . ≤ k ≤ . for robust, . ≤ k ≤ . for inex test beds. best runs for the terabyte test bed tend to have larger choices of k , i.e., k ≥ . . limiting the influence of the proximity score part makes sense, i.e., minidf = usually performs worse than values below : the best ndcg@ runs use . ≤ minidf ≤ . for web and robust, . ≤ minidf ≤ . for terabyte, and . ≤ minidf ≤ . for inex. the best map runs use . ≤ minidf ≤ . for web, . ≤ minidf ≤ . for robust, . ≤ minidf ≤ . for terabyte, and . ≤ minidf ≤ . for inex. the choice of the idf-variant has practically no impact on the result quality for all test beds and both retrieval metrics. optimize ndcg@ optimize map collection k k b minidf idf ndcg@ k k b minidf idf map web . . . . idf . . . . . idf . robust . . . . idf . . . . . idf . terabyte . . . . idf . . . . . idf . inex . . . . idf . . . . . idf . table . : büttcher et al.’s scoring model: optimal tuning parameter setting with ndcg@ and map values. table . contains the optimal tuning parameter settings for büttcher et al.’s scoring model with ndcg@ and map values for all test beds. rasolofo and savoy: for the evaluation of rasolofo and savoy’s scoring model, we use the same parameters as for bm . in addition, dist ∈ { , , , } ( variants) is varied which specifies the text window width where pairs of query term occurrences influence each other’s proximity contribution. therefore, · = parameter combinations are evaluated per test bed. . evaluation for selected score models for web and inex, smaller choices of b ( . or . ) usually generate better ndcg@ and map values. for ndcg@ , both web and terabyte work best with medium and larger-valued k : . ≤ k ≤ . . to yield good ndcg@ values for robust and inex, k should be chosen not that large: . ≤ k ≤ . and . ≤ k ≤ . perform best. to achieve good map performance, k values should be chosen a bit smaller than for ndcg@ values, i.e., . ≤ k ≤ . for robust and inex, . ≤ k ≤ . for terabyte, and k ≤ . for web. there is a high impact of the choice of dist, especially for the ndcg@ metric. unfortunately, it is not clear whether to choose high or low dist values. the highest peaks are generated for the terabyte test bed: if chosen wrong, the ndcg@ value can drop from % to %. only the map value on web and robust is not influenced much by the dist parameter. furthermore, the choice of the idf version has a similar impact as dist and there is no tendency which idf version to prefer. consequently, rasofolo and savoy’s scoring model is difficult to tune. optimize ndcg@ optimize map collection k k b dist idf ndcg@ k k b dist idf map web . . . idf . . . . idf . robust . . . idf . . . . idf . terabyte . . . idf . . . . , idf . inex . . . idf . . . . idf . table . : rasolofo and savoy’s scoring model: optimal tuning parameter setting with ndcg@ and map values. table . contains the optimal tuning parameter settings for rasolofo and savoy’s scoring model with ndcg@ and map values for all test beds. language model with dirichlet smoothing: for the dirichlet smoothed language model we vary the smoothing parameter μ ∈ { , , , , } which leads to five evaluated runs per test bed. the evaluation shows that the spread in result quality is usually very small so that the choice of the tuning parameter does not have a large influence. nevertheless, often smaller choices of μ yield small improvements, e.g., for the map value on robust and inex as well as the ndcg@ value on robust and terabyte. for map on web and ndcg@ on inex, larger choices of μ are often slightly better. there is no clear tendency whether to choose μ small or large for map on terabyte and ndcg@ on web. optimize ndcg@ optimize map collection μ ndcg@ μ map web . , . robust . . terabyte . . inex , . . table . : language model with dirichlet smoothing: optimal tuning parameter setting with ndcg@ and map values. table . contains the optimal tuning parameter settings for language model with . comparative analysis for selected score models dirichlet smoothing with ndcg@ and map values for all test beds. zhao and yun: for the evaluation of zhao and yun’s score we use dirichlet smooth- ing with smoothing parameter μ ∈ { , , , , } ( variants), scaling parameter x ∈ { . , . , . , . , . , . } ( variants), λ ∈ { . , . , . , . , . } ( variants), and proximate centrality chosen between minimum distance, average dis- tance, and summed distance ( variants). this amounts to · · · = evaluated parameter combinations per test bed. to achieve high ndcg@ values, usually μ = is a good choice on all test beds; only for inex μ ∈ { , } performs better. the best map-oriented runs use μ = for inex and robust, μ = for terabyte, and μ = for web test beds. for ndcg@ , while among the top runs for robust and terabyte the average distance measure is most frequently used and for inex the minimum distance measure is most frequently used as proximate centrality measure, there are no noticeable tendencies for web. for map, while the summed distance and minimum distance measures are most frequent among the top runs of robust and inex, there are no noticeable tendencies for web and terabyte. x and λ are very heterogeneously chosen among the top runs for all test beds; therefore, it is hard to give a general recommendation for choices of x and λ. optimize ndcg@ optimize map collection μ x λ p roxb (ti) ndcg@ μ x λ p roxb (ti) map web . p roxavgdist(ti) . p roxm indist(ti) . robust . p roxavgdist(ti) . . p roxm indist(ti) . terabyte . p roxavgdist(ti) . p roxsumdist(ti) . inex . p roxavgdist(ti) . . p roxsumdist(ti) . table . : zhao and yun’s scoring model: optimal tuning parameter setting with ndcg@ and map values. table . contains the optimal tuning parameter settings for zhao and yun’s scoring model with ndcg@ and map values for all test beds. tao and zhai: for the evaluation of tao and zhai’s score we use a language model with dirichlet smoothing and smoothing parameter μ ∈ { , , , , , , , , , , } ( variants), α ∈ { . , . , . . . , . , . } ( variants), and the kernels mindist, avgdist, and maxdist ( variants). this results in · · = evaluated runs per test bed. the evaluation shows that the choice of the kernel has only a minor influence on result quality, although for the robust and inex test beds mindist appears fre- quently among the best runs. smaller and medium-valued choices of μ perform usually better than large choices. if one aims at optimizing map values, μ ∈ { , , } works well for terabyte and inex, μ ∈ { , , } for robust, and μ ∈ { , , , } for web. if one aims at optimizing ndcg@ values, μ ∈ { , , } yields best values for terabyte (μ = works especially well), μ ∈ { , , , } for inex, μ ∈ { , , , } for robust, and . evaluation for selected score models μ ∈ { , , } for web. setting μ= works with all test beds and metrics. it is unclear how to select α: almost all values of α are represented within the best runs on all test beds with both metrics. optimize ndcg@ optimize map collection μ α kernel ndcg@ μ α kernel map web , . maxdist . , . mindist . robust . mindist . . mindist . terabyte . maxdist . , . mindist . inex . mindist . . mindist . table . : tao and zhai’s scoring model: optimal tuning parameter setting with ndcg@ and map values. table . contains the optimal tuning parameter settings for tao and zhai’s scoring model with ndcg@ and map values for all test beds. es: as described in section . , cummins and o’riordan linearly combine the es score with their proximity score combinations learned by genetic programming. as we do not have an implementation of this non-trivial genetic programming framework, we just use es as another content-score without any parameters, generating only one run per test bed. consequently, we cannot provide any optimal tuning parameter settings for ndcg@ and map values. lv and zhai: the scoring model proposed by lv and zhai builds one positional language model for each word position in the document. as a consequence, it is com- putationally very expensive so that we could not evaluate the terabyte test bed. to further reduce computation costs, we have evaluated using the gaussian kernel with dirichlet prior smoothing as the gaussian kernel is considered superior by lv and zhai (cf. section . . ). we have evaluated four parameter combinations, namely σ ∈ { , } and μ ∈ { , }. to rank, we scored each document by the best position in that document. for the three test beds (web, robust, and inex), we found that both for ndcg@ and map used as retrieval quality metric, the combination μ = and σ = yielded the best results. thus, the intercollection generalization results are perfect (always . ) on this restricted set of parameter combinations for all pairs of test beds. song et al.: we evaluate song et al.’s scoring model with k ∈ { . , . , . } ( vari- ants), b ∈ { . , . } ( variants), two idf implementations, x ∈ { , . , . , . , . , } ( variants), y ∈ { , . , . , . , } ( variants), and dmax ∈ { , , } ( variants) which amounts to · · · · · = , parameter combinations. large k ( . ) work best for ndcg@ with the web and terabyte test beds. the best parameter combinations for inex include medium and large choices of k (i.e., . and . ), whereas we obtain the best values on robust for small and medium choices of k ( . and . ). for map, recommended choices of k are more homoge- neous: small and medium choices of k (i.e., . or . ) yield the best map values . comparative analysis for selected score models for all test beds. for all test beds and both map and ndcg@ metrics, dmax = is very frequent among the top performing parameter settings. except for terabyte and the ndcg@ metric (where the choice of b is unclear), b set to . is common for the best runs. the choice of the idf version has only a minor impact on the result quality. choices of x and y among the best runs are too heterogeneous to say anything meaningful about them. optimize ndcg@ optimize map collection k k b idf x y dmax ndcg@ k k b idf x y dmax map web . . . idf . . . . . . idf . . . robust . . . idf . . . . . . idf . . . terabyte . . . idf . . . . . . idf . . . inex . . . idf . . . . . . idf . . . table . : song et al.’s scoring model: optimal tuning parameter setting with ndcg@ and map values. table . contains the optimal tuning parameter settings for song et al.’s scoring model with ndcg@ and map values for all test beds. de kretser and moffat: we evaluate de kretser and moffat’s scoring model in conjunctive and disjunctive mode ( variants), using the contribution functions triangle, cosine, circle, arc, circle’, and arc’ ( variants), and the two algorithms to obtain a ranking for documents ( variants) which generates · · = runs in total. de kretser and moffat’s scoring model performs worse than all other scoring models we have evaluated. nevertheless parameters have a high influence on result quality also for this scoring model; conjunctive evaluation of queries always provides higher retrieval quality than disjunctive evaluation which is especially high for terabyte and inex test beds. for ndcg@ advantages amount to about and percentage points, for map to around and percentage points, respectively. only for the robust test bed with map values, it is not clear whether one should use conjunctive or disjunctive query evaluation. to obtain a ranking for documents, choosing the first algorithm that greedily aggregates scores from different positions and documents (first algorithm) is often a bit better (below percentage points) than considering the position with maximum score per document (second algorithm). this does not hold for the web test bed: if one wants to optimize ndcg@ values, it remains unclear which ranking algorithm yields the better retrieval quality, for map values the second algorithm is often slightly better than the first algorithm. optimize ndcg@ optimize map collection conj./disj. kernel algorithm ndcg@ conj./disj. kernel algorithm map web conjunctive circle’ nd algorithm . conjunctive circle nd algorithm . robust conjunctive circle st algorithm . disjunctive circle’ st algorithm . terabyte conjunctive arc st algorithm . conjunctive circle st algorithm . inex conjunctive circle st algorithm . conjunctive circle’ st algorithm . table . : de kretser and moffat’s scoring model: optimal tuning parameter setting with ndcg@ and map values. table . contains the optimal tuning parameter settings for de kretser and moffat’s . evaluation for selected score models scoring model with ndcg@ and map values for all test beds. for all test beds, de kretser and moffat’s approach falls behind the retrieval quality of the remaining scoring models. . . intercollection and intracollection generalization results in this subsection, we measure both intercollection and intracollection generalization performance of different scoring models. to measure the intercollection generalization performance of a scoring model for a given evaluation metric, metzler [met b] first computes the parameter combination for a training test bed that achieves the highest retrieval quality. this parameter combination is used as parameter combination for the test data (another test bed); the resulting retrieval quality m′ is divided by the best retrieval quality m∗ achievable on the test data to compute the effectiveness ratio g = m ′ m∗ . we use one document collection with the corresponding topic set all as training test bed to check the retrieval quality for some parameter combinations. then, we employ the parameter combination that yields the highest retrieval quality for the training data with a different document collection with the corresponding topic set all for that second collection (test data). according to metzler [met b], an ideal model that generalizes perfectly achieves an effectiveness ratio of . while effectiveness ratios below . indicate a scoring model’s missing ability to generalize, the most reasonable retrieval models have an effectiveness ratio above . . table . shows the intercollection generalization results for various scoring models for both the ndcg@ and the map metric. büttcher et al.’s scoring model and the lm approach with dirichlet smoothing generalize especially well: all effectiveness ratios for both metrics are above %. in most cases, for the ndcg@ metric, the other scoring models do not generalize as well as these two approaches, but usually still generalize reasonably well: bm ’s and rasolofo and savoy’s effectiveness ratios are always above . %; when trained on terabyte or inex, the ratio even always exceeds %. zhao and yun’s scoring model’s effectiveness ratio is always above . %; when trained on web, robust or terabyte, the ratio overscores %. for song et al.’s scoring model the effectiveness ratio overscores . %; when trained on web, robust or inex, the ratio overscores %. only de kretser and moffat’s scoring model slightly underscores the % bound at a level of . % when it is trained on web and tested with terabyte which may still be acceptable. for the map metric, bm and song et al.’s scoring model have an effectiveness ratio above % and thus generalize very well. zhao and yun’s scoring model and tao and zhai’s scoring model have a high effectiveness ratio of at least . % and . %, respectively; when trained on robust, terabyte or inex, the ratio always ex- ceeds %. rasolofo and savoy’s scoring model slightly underscores the % bound at a level of . %; it may still be acceptable, especially when trained with robust or terabyte. de kretser and moffat’s scoring model is not able to generalize: when . comparative analysis for selected score models trained on robust and tested on terabyte the effectiveness ratio is just . %. scoring model ndcg@ map train\test web robust terabyte inex web robust terabyte inex bm web - . . . - . . . robust . - . . . - . . terabyte . . - . . . - . inex . . . - . . . - büttcher et al. web - . . . - . . . robust . - . . . - . . terabyte . . - . . . - . inex . . . - . . . - rasolofo, savoy web - . . . - . . . robust . - . . . - . . terabyte . . - . . . - . inex . . . - . . . - lm, dirichlet web - . . . - . . . robust . - . . . - . . terabyte . . - . . . - . inex . . . - . . . - zhao, yun web - . . . - . . . robust . - . . . - . . terabyte . . - . . . - . inex . . . - . . . - tao, zhai web - . . . - . . . robust . - . . . - . . terabyte . . - . . . - . inex . . . - . . . - song et al. web - . . . - . . . robust . - . . . - . . terabyte . . - . . . - . inex . . . - . . . - de kretser, moffat web - . . . - . . . robust . - . . . - . . terabyte . . - . . . - . inex . . . - . . . - table . : intercollection generalization results for various scoring models. the intracollection generalization measure deals with how well a model trained on one topic set for a given collection generalizes to a different topic set on the same collection. like for the intracollection generalization measure, the effectiveness ratio g = m ′ m∗ is computed. to this end, the topic set is divided in two halves; one half is used for training, the other half for evaluation. this procedure is repeated , times to compute an average value for g which represents the intracollection generalization measure. all scoring models exhibit high intracollection generalization values between % and % on all test beds with both the map and ndcg@ evaluation metrics. therefore, we do not show the exact values. . . sensitivity charts following metzler’s work [met a, met b], we compute entropy and spread values for the scoring models. the spread of the effectiveness metric measures the quality difference between the parameter setting with the highest retrieval quality and the parameter setting with the lowest retrieval quality. therefore, it gives an idea of how bad the results can get if we choose the wrong parameter values. given a topic set q and the corresponding relevance assessments r with t = (q,r), . evaluation for selected score models the entropy is defined as h = − ∫ θ p(θ|t ) log p(θ|t ). to estimate p(θ|t ), the following procedure is performed b= , times: in iter- ation b, we repeatedly sample a subset of topics from a test bed, i.e., if we have |q| topics, we sample |q| times with repetition. after sampling, we have obtained a subset tb of t , and determine the best parameter combination θb for tb. after b iterations, metzler estimates the posterior p(θ|t ) s.t. p(θ|t ) = ∑b i= δ(θ,θi) b , where δ(θ,θi) denotes kronecker’s delta. that means that one counts, for any given parameter combination θ, how often θ has been chosen as an optimal parameter combi- nation during the b iterations and divides this number by the number of iterations b. according to [met a], the spread and entropy provide a novel, robust way of looking at parameter sensitivity. metzler claims that a model with high entropy and low spread is more stable than a model with low entropy but large spread; an ideal model features both low entropy and low spread. we think that this kind of evaluation is only fair when the number of evaluated parameter combinations is similar for all scoring models as the number of evaluated parameter combinations biases the results: the more parameter combinations of a scoring model are evaluated, the potentially higher its entropy and spread. the reason for different numbers of evaluated parameter combinations has two reasons: on the one hand, the number of parameters differs from scoring model to scoring model, on the other hand, evaluating many parameter combinations is infeasible for some scoring models as it is computationally too expensive such that experiments take arbitrarily long time. therefore, the experiments carried out for lv and zhai’s scoring model (four set- tings), for the dirichlet smoothed language model (five settings), and de kretser and moffat’s scoring model ( settings) are not directly comparable to the remaining scor- ing models. anyway, we leave them in the sensitivity charts as the entropy and spread values can be considered as a lower bound for these scoring models: if more settings had been evaluated, the values would have potentially increased. in other words: if the spread or entropy values for the scoring model under consideration are already high with a small amount of evaluated settings, the scoring model would also perform bad or even worse given more evaluated settings. when evaluating the sensitivity using ndcg@ , de kretser and moffat’s scor- ing model usually features a comparably high spread. this is mainly due to the re- trieval quality difference between runs using conjunctive and disjunctive evaluation. the dirichlet smoothed language model just uses one parameter (μ) and therefore is less affected by high spreads. lv and zhai’s model usually features the lowest entropy which is also caused by the low number of evaluated settings. we show sensitivity charts in appendix a to depict entropy and spread values for nine scoring models on the web, robust, gov, and inex test beds. . comparative analysis for selected score models figures a. (a) and a. (b) show the sensitivity of nine scoring models on the web test bed for the map and ndcg@ evaluation metric, respectively. figures a. (a) and a. (b) show the sensitivity of scoring models on the robust test bed for map and ndcg@ evaluation metrics, respectively. figures a. (a) and a. (b) show the sensitivity of scoring models on the terabyte test bed for map and ndcg@ evaluation metrics, respectively. figures a. (a) and a. (b) show the sensitivity of scoring models on the inex test bed for map and ndcg@ evaluation metrics, respectively. for the scoring models with or less evaluated parameter settings, the entropy value is naturally very low. given that small amount of evaluated parameter settings, the spread of de kretser and moffat’s scoring model is very high which renders it a scoring model which is difficult to tune. among the scoring models which had at least evaluated parameter settings, song et al.’s scoring model and tao and zhai’s scoring model exhibit always the highest spread. bm , büttcher et al.’s, zhao and yun’s, as well as rasolofo and savoy’s scoring model have usually low spreads (except for rasolofo and savoy’s model on terabyte with ndcg@ where the spread is higher) and bm usually offers the lowest spread. the entropy value of büttcher et al.’s and song et al.’s scoring model are usually highest. for the inex test bed, zhao and yun’s (both for map and ndcg@ ) and rasolofo and savoy’s scoring model (only for map) have a higher entropy. furthermore, zhao and yun’s approach has a higher entropy value than büttcher et al.’s approach for the map value on terabyte. in our setting, we think that the spread value is more meaningful than the entropy value as it measures how much retrieval quality can decrease if we choose the wrong parameter combination. . . summary büttcher et al.’s scoring model and lm dirichlet smoothing provide the best intergen- eralization values for both ndcg@ and map. the other scoring models are slightly behind, but still exceed a level of % except de kretser and moffat’s scoring model whose effectiveness ratio is just slightly above % for map. the intracollection gener- alization measures are excellent ( % to %) for all scoring models. scoring models with low spread values include bm , büttcher et al.’s, and zhao and yun’s scoring model. with the exception of de kretser and moffat’s scoring model, all surveyed prox- imity scoring models perform well in relevant sensitivity and generalization measures. we focus later on büttcher et al.’s scoring model since it combines one of the best intercollection generalization values and a low spread. chapter extensions . introduction this chapter deals with extensions to the proximity score model proposed by büttcher et al. [bcl ] described in section . . and provides an extensive experimental study to investigate their impact on retrieval quality. term proximity has been a common means to improve effectiveness for text retrieval, passage retrieval, and question answering, and several proximity scoring functions have been developed in recent years. sections . to . survey a selection of proximity scoring models developed for text retrieval during the last decade. for xml retrieval, however, proximity scoring has not been similarly successful. to the best of our knowl- edge, there is only one single existing proposal for proximity-aware xml scoring. this proposal has been authored by beigbeder and was initially described in [bei ] and ex- tended towards full boolean query support in [bei ] by the same author. it computes, for each position in an element, a fuzzy score for the query, and then computes the overall score for the element by summing the scores of all positions and normalizing by the element’s length. we provide a more detailed description of this scoring model in section . . . the contributions of this chapter are two-fold: ) in section . we propose one of the first xml score models that uses proximity information. this part is based on our work published in [bs b] and [bst ] which presents a proximity score for content- only queries on xml data. we describe how to adapt the existing scoring model proposed by büttcher et al. [bcl ] towards xml element retrieval by taking into account the document structure when computing the distance of term occurrences. ) in section . , by means of a case study, we rigorously analyze the potential of explicit phrases for retrieval quality and compare it to the proximity score used in [sbh+ ]. this part is based on our work published in [bbs ]. . extensions . xml in this section, we introduce some xml-related background and describe beigbeder’s approach for proximity-enhanced xml retrieval [bei , bei ] as well as his experi- mental results. then, we present our own xml score model for content-only queries on xml data that uses proximity information published in [bs b] and [bst ]. we show experimental results for two test beds and present a new evaluation metric. . . xml background in the context of the inex workshop, documents are wikipedia articles that have been annotated with xml tags. for our experiments in this chapter, we use the wikipedia collection used for inex during the years to (cf. section . . ) which contains tags that can be classified into two categories [dg a]: a) language- independent general tags that carry structural information derived from the wikitext format, and b) language-dependent template tags which describe repetitive information. examples for general tags include article, section, p (which stands for paragraph), title, various forms of links (e.g., collectionlink and unknownlink), and emphasis levels (e.g., emph and emph ). template tags always start with template_ and vary depending on the language of the wikipedia collection in use. according to the w c recommendation from november (http://www.w . org/tr/xml/), elements are either delimited by start tags and end tags (e.g., <article> and </article>), or, for empty elements, by an empty-element tag (e.g., <br/>). each element has a type, identified by name (generic identifier (gi)), and may have a set of attribute specifications. each xml document can be represented as an element tree. nodes represent elements and directed edges indicate parent-child relationships be- tween elements in the document under consideration. if the complete collection in- cluding links is considered, the tree structure is converted into the more general graph structure, links being considered as directed edges which may generate loops. hence, xml retrieval aims at retrieving subtrees/subgraphs from the collection graph as re- sults to an issued query. according to [kgt+ ], the two main research questions for the inex ad hoc track are ) whether the document annotation helps to identify the relevant portion of a document, and ) how focused retrieval compares to traditional document-level retrieval. . . notation to discuss proximity scoring models for xml elements, we adapt the notation intro- duced for text retrieval in section . . to the xml element retrieval setting where term positions in an element are defined analogously to term positions in documents. definition . . . (element length; position-related notation) given an element e in an xml document d, the element length of e is defined as le = |e| and corresponds . xml to the number of term occurrences in e. given e with length le, we denote the term occurring at position i of e by pi(e), ≤ i ≤ le; if the element is clear from the context, we simply write pi. for a term t, we capture the positions in element e where t occurs by pe(t) = {i|pi(e) = t} ⊆ { , . . . , le}; if e is clear from the context, we write p(t). given a query q = {t , . . . , tn}, we write pe(q) := ∪ti∈qpe(ti) for the positions of all query terms in element e, again omitting the suffix e if the element is clear from the context. given a set of positions p ⊆ { , . . . , le} and an element e, we write te(p) to denote the set of terms at the positions of p ⊆ { , . . . , le} in e. precisely, te(p) = {t| i ∈ p ∧pi(e) = t}. definition . . . (set of pairs of adjacent query term occurrences; set of pairs of all query term occurrences) we denote pairs of query terms that are adjacent to each other (there might be non-query terms in between) in an element e by qadj,e(q) := {(i,j) ∈ pe(q) × pe(q) | (i < j) ∧ ∀k ∈ {i + , . . . ,j − } : k �∈ pe(q)}. pairs of query terms within a window of dist positions in an element e are defined as qall,e(q,dist) := {(i,j) ∈ pe(q) × pe(q) | (i < j) ∧ (j − i ≤ dist)}. please note that in this case, the query terms need not to occur consecutively in e. qall,e(q) is the same but employs a window size of le. . . related work by beigbeder this section describes a proposal for proximity-aware xml scoring that has been au- thored by beigbeder and was initially described in [bei ] and extended towards full boolean query support in [bei ] by the same author. he transfers a score model akin to the one proposed by de kretser and moffat for text retrieval in [dkm ] (cf. section . . ) to xml retrieval. the approach answers boolean queries. to this end, it introduces several modes to combine the impacts of the contribution function at position x in document d: • conjunctive mode: cq ∧q (x) = min(cq (x),cq (x)), • disjunctive mode: cq ∨q (x) = max(cq (x),cq (x)), and • complement mode: c¬q (x) = − cq (x), where qi is a boolean query. if qi is a term t, the value of the contribution function at position x in d is defined as ct(x) = maxl∈pd(t)c ′ t(x,l), where c ′ t(x,l) = max( , − |x−l| s ). the contribution function c′t is triangle-shaped, its height ht is , and the spread s is considered a built- in parameter which is kept constant for all terms. for the most frequent elements in the wikipedia collection used for inex , beigbeder distinguishes between manually chosen title-like elements and section-like elements. while title-like elements encompass name, title, template, and caption elements, section-like elements consist of article, section, body, figure, image, page, and div elements. . extensions to score full xml documents or passages in xml documents, query terms that occur in title-like elements can extend their influence to the full content of the element and recursively to the elements it contains. the intention of that so-called propagation mode is to reflect the descriptive property of the title element for the section element it entitles. thus, given any positions l and x, if l is located in a title-like element et and x in a section-like element es that is entitled by et, it follows that ct(x) = . for all positions x located in any title-like element, the contribution ct(x) is . the score of a document or passage p, respectively that starts at position x and ends at position x is defined as score(q,p) = ∑ x ≤x≤x cq(x) |p| , where the document/passage length |p| = x − x + is used for score normalization. the approach requires a mapping that keeps information whether a given term posi- tion belongs to a title-like or section-like element. for the propagation mode, additional descendant information for elements is necessary to decide where to propagate scores. descendants information for xml documents can be kept in pre-/post-order trees, for example. experimental evaluation: for the experimental evaluation, beigbeder evaluates the assessed topics from the inex ad hoc track (with the inex wikipedia collection – ), drops importance modifiers, and mostly uses keywords in the title field. some topics are modified before evaluation to fit the boolean model better (e.g., spanish classical guitar players is modified to spanish ( classical | classic ) guitar players). beigbeder varies the spread s and evaluates three approaches, retrieving only section-like elements: ) np-ns (no propagation, no structure) where the structure is ignored (term proximity only used as in text retrieval), ) np-s (no propagation, struc- ture) where only section-like elements are retrieved, term proximity influence ends at the boundaries of section-like elements, terms in title-like elements are not propagated, and ) p-s (propagation, structure) where title-element terms’ propagation is enabled. the best run’s (p-s, s= ) ip-value of . outperforms the best inex run( . ). for s ∈ { , , }, precision-recall curves are highest for p-s whose ip value benefits from small choices of s. . . proximity scoring for xml this section presents our proximity-enhanced score model for xml element retrieval based on our work published in [bs b] and [bst ] which answers content-only queries on xml data. to compute a proximity score for an element e with respect to a query with multiple terms q = {t , . . . , tn}, we first compute a linear representation of e’s content that takes e’s position in the document into account, and then apply a variant of the proximity . xml article p section p section a b c d e f g h i j x zk u v w <p> d e </p> <article> a b </article> <section> c f <p> g h </p> i j </section> k <section> u v w </section> x z figure . : an xml document and its linearization. score by büttcher et al. [bcl ] on that linearization. this variant has been first proposed in [sbh+ ] and will be described in detail in section . . . figure . shows an example for the linearization process. we start with the se- quence of terms in the element’s content. now, as different elements often discuss different topics or different aspects of a topic, we aim at giving a higher weight to terms that occur together in the same element than to terms occurring close together, but in different elements. to reflect this in the linearization, we introduce virtual gaps at the borders of certain elements whose sizes depend on the element’s tag (or, more generally, on the tags of the path from the document’s root to the element). in the example, gaps of section elements may be larger than those of p (paragraph) elements, because the content of two adjacent p elements within the same section element may be considered related, whereas the content of two adjacent section elements could be less related. some elements (like those used purely for layout purposes such as bold or for navigational purposes such as link) may get a zero gap size. the best choice for gaps depends on the collection; gap sizes are chosen manually in our experiments. based on the linearization, we apply the proximity scoring model of büttcher et al. [bcl ] (cf. section . . ) for each element in the collection to find the best matches for a query q = {t , . . . , tn} with multiple terms. to allow index precomputation without knowing the query load, we reuse the modi- fied variant proposed in [sbh+ ] (detailed explanations can be found in section . . ) that does not only consider pairs of adjacent query term occurrences in documents, but all pairs of query term occurrences (not necessarily adjacent). we further gener- . extensions alize the approach to score elements instead of documents, so the query-independent term weights in the formulas are not inverse document frequencies but inverse element frequencies ief(t) = log n − ef(t) + . ef(t) + , where n is the number of elements in the collection and ef(t) is the number of ele- ments that contain the term t. similarly, average and actual lengths are computed for elements. please note that, unlike [bstw ], we do not use a tag-specific ief score iefa(t) = log na − efa(t) + . efa(t) + , where na is the tag frequency of tag a and efa(t) is the element frequency of term t as to tag a, i.e., the number of elements (in documents of the corpus) with tag a that contain t in their full-content. we demonstrated in [bs b] (and also in additional non-submitted results in [bstw ]) that a global ief value for each term (i.e., ief(t)) achieves better result quality for content-only (co) queries than tag-specific ief values (i.e., iefa(t)). the bm score of an element e for a query q is defined as scorebm (e,q) = ∑ t∈q ief(t) tf(e,t) · (k + ) tf(e,t) + k , where k=k·[( − b) + b · le avgel ] with avgel being the average element length in c. b, k , and k are tuning parameters that are set to b = . and k = k = . , respectively. as for xml element retrieval the element length is important to keep up result quality, we do not ignore it in the proximity score component as in [sbh+ ]. hence, the proximity part of an element’s score is computed by plugging the acc values into a bm -style scoring function: scoreprox(e,q) = ∑ t∈q min{ , ief(t)}acc(e,t) · (k + ) acc(e,t) + k , where acc(e,t) = ∑ (i, j) ∈ qall,e(q) : pi = t, pj = t ′, t �= t′ ief(t′) (i − j) + ∑ (i, j) ∈ qall,e(q) : pi = t ′, pj = t, t �= t′ ief(t′) (i − j) and k as well as the configurable parameters are set like for the bm score contribu- tion. the overall score is then the sum of the bm score and the proximity score: score(e,q) = scorebm (e,q) + scoreprox(e,q). . xml . . experimental evaluation in order to evaluate our methods, in [bs b] we used the standard inex benchmark, namely the inex wikipedia collection [dg a] with the content-only (co) topics from the inex ad hoc task . the topics with relevance assessments are shown in appendix c. following the methodology of the inex focused task, we computed, for each topic, a list of the best non-overlapping elements with highest scores and evaluated them with the interpolated precision metric used at inex [kpk+ ]. details about the metric are given in section . . when we check for significant improvements of an approach over the bm baseline, we first check for significance using the wilcoxon signed rank test as it does not make any assumptions about the distribution of differences between pairs of results. if it fails at p< . , we try the paired t-test which assumes a normal distribution of differences between pairs of results. in all tables of this section, ‡ and † indicate statistical sig- nificance over the baseline according to the wilcoxon signed rank test at p< . and p< . , respectively. * and / indicate statistical significance over the baseline according to the paired t-test at p< . and p< . , respectively. results for document-level retrieval for our first experiment, we evaluated how good our proximity-aware scoring is at determining documents with relevant content. we limited the elements in the result set to article elements, corresponding to complete wikipedia articles, and considered different gap sizes, where we report ( ) gaps of size for all elements, ( ) gaps of size for section and for p elements, and ( ) gaps of size for section and p elements. approaches ( )-( ) all exploit proximity information in the form of scoreprox(e,q), and approaches ( ) and ( ) increase distances between query term occurrences in different elements by artificial gaps. we call the first approach gap-free, the latter two approaches gap-enhanced models. additionally, we report results without proximity (i.e., only the bm score scorebm (e,q) is used to rank elements) as baseline results. our implementation first computed the best results for the bm baseline and then additionally computed the different proximity scores for these results, re-ranking the result list. table . shows the results for document-level retrieval with stopword removal. if stemming is enabled, usage of the gap-free model that employs proximity information improves every ip and maip value compared to the baseline, and gaps help additionally (except for ip[ . ]). the same holds if stemming is disabled, this time without any due to a bug reported for the original inex implementation, we used a java-based reimplementa- tion of the metric. . extensions stemming, stopword removal no stemming, stopword removal metric baseline ( ) ( ) ( ) baseline ( ) ( ) ( ) ip[ . ] . . † . † . / . . ‡ . ‡ . ‡ ip[ . ] . . * . * . * . . * . † . † ip[ . ] . . / . * . / . . / . * . * maip . . ‡ . ‡ . ‡ . . ‡ . ‡ . ‡ table . : results for document-level retrieval with stopword removal. exception. in both cases, we get very significant improvements for proximity scores over the baseline. with only a few exceptions, gap-enhanced approaches can further improve the ip result quality over gap-free approaches. for the maip metric all approaches achieve significant improvements over the baseline with the wilcoxon signed rank test at p< . . stemming, no stopword removal no stemming, no stopword removal metric baseline ( ) ( ) ( ) baseline ( ) ( ) ( ) ip[ . ] . . . . . . . . ip[ . ] . . . . . . . . ip[ . ] . . . . . . . . maip . . . . . . . . table . : results for document-level retrieval without stopword removal. table . depicts the impact of missing stopword removal on the results for document-level retrieval. the results clearly demonstrate that stopword removal is crucial if we do not want to risk decreasing result quality with proximity scores com- pared to the baseline. if the query contains stopwords, the loss of result quality can be attributed to stopword occurrences near other query terms in some documents; as all pairs of query terms are considered if a document is to be scored, they generate an increased proximity contribution for the corresponding document. we think that these pairs are less meaningful (i.e., carry less semantics) than pairs of non-stopwords. gap-enhanced models cannot resolve the issue of losing result quality against the baseline. they just reduce the losses if stemming is disabled but do not get even close to the baseline’s result quality. consequently, all significance tests to show improvements over the baseline fail. in summary, stopword removal is mandatory to get high retrieval quality for document-level retrieval and gap-enhanced approaches can often help additionally to improve the retrieval quality. in most cases, runs that are based on disabled stemming have slight advantages for the absolute ip values over those runs that use stemming. we get the best maip values when stemming is enabled and stopwords are removed. results for element-level retrieval we now evaluate the performance of proximity-aware scoring for element-level retrieval, where we limit the set of elements in the result list to those with article, body, . xml section, p, normallist, and item tags for efficiency reasons; initial experiments with all tags yielded similar results. as we had to remove overlap, we first computed the best elements for the bm baseline, for which we then computed the proximity scores, resorted the list according to the new scores, and removed the overlap between elements. whenever two elements overlapped, we kept the element with the highest score. stemming, stopword removal no stemming, stopword removal metric baseline ( ) ( ) ( ) baseline ( ) ( ) ( ) ip[ . ] . . ‡ . † . † . . . . ip[ . ] . . ‡ . ‡ . ‡ . . † . † . ip[ . ] . . ‡ . ‡ . ‡ . . † . . maip . . ‡ . ‡ . ‡ . . . † . † table . : results for element-level retrieval with stopword removal. table . illustrates the results for element-level retrieval with stopword removal. the best results and most significant improvements in element-level retrieval can be achieved if stemming is enabled. while the gap-free approach shows significant im- provements over the baseline (wilcoxon signed rank test at p< . , for every metric), the gap-enhanced approaches slightly lose absolute result quality compared to the gap- free approach. however, this does not overly harm the significance of improvements of gap-enhanced approaches over the baseline. for all metrics, except for ip[ . ], we achieve significant improvements with the wilcoxon signed rank test at p< . , for ip[ . ] the improvements are still significant according to the wilcoxon signed rank test, but only at p< . . if stemming is disabled, the usage of proximity improves every ip value compared to the baseline, but gaps help slightly only for early ip values. sig- nificant improvements over the baseline using the wilcoxon signed rank test at p< . can be realized only for later ip values. in general, compared to stemming with stopword removal, no stemming with stop- word removal achieves less significant improvements for approaches ( )-( ) over the baseline (if at all) as well as a lower absolute result quality. stemming, no stopword removal no stemming, no stopword removal metric baseline ( ) ( ) ( ) baseline ( ) ( ) ( ) ip[ . ] . . * . / . . . . . ip[ . ] . . / . / . . . . . ip[ . ] . . . . . . ‡ . † . † maip . . ‡ . ‡ . † . . ‡ . † . † table . : results for element-level retrieval without stopword removal. table . shows the results for element-level retrieval without stopword removal. gap-free models improve every ip and maip value over the baseline, except for ip[ . ] if stemming is disabled. gap-enhanced models slightly lose on absolute result quality compared to gap-free models but still frequently beat the baseline. . extensions when we combine stemming with stopword removal, we achieve the best and most significant results for element-level retrieval. gaps, however, help only for early ip values if stemming is disabled and stopwords are removed. stopword removal is more important for document-level retrieval than for element-level retrieval if we want to obtain a good result quality, but our approaches benefit from stopword removal at both retrieval granularities. the structure-aware proximity score for xml retrieval that we have presented helps to improve the retrieval effectiveness of gap-free approaches for document-level retrieval, but does not show a similar effect for element-level retrieval. an automated selection of gap sizes by means of relevance feedback techniques could improve the result quality. . . additional experiments for inex this subsection describes additional experiments we have carried out for inex . it extends the experiments from section . . which used the co topics from the inex ad hoc task by another test bed (including the same document collection) used in the inex ad hoc track. an overview of the inex ad hoc track has been authored by kamps et al. and has been published in [kgt+ ]. topics have been assessed for the inex ad hoc track which are depicted in appendix c, table c. . the choice of runs we submitted to the focused task at inex [bst ] was based on earlier results from sigir [bs b]: as ip[ . ] is the metric that ranks the runs in inex, we have chosen the setting that provides the highest retrieval quality at ip[ . ] from our previous experiments (detailed in section . . ), i.e., no stemming, but stopword removal in document-level retrieval. the focused task aims at returning a ranked list of elements or passages in a focused way, i.e., returned elements must not overlap. according to [kgt+ ], participants were allowed to submit up to three element result-type runs per task and three passage result-type runs each, for the focused, relevant in context, and best in context task in the ad hoc track. as we have only evaluated element result-type runs for the focused task, we have only been allowed to submit three runs as described in the following: • topx-co-baseline-articleonly: this run considers the non-stemmed terms in the title of a topic (including the terms in phrases, but not their sequence) except terms in negations and stopwords. we restricted the collection to the top-level article elements and computed the , articles with the highest scorebm value as described in section . . . note that this approach corresponds to stan- dard document-level retrieval. this run is comparable to the baseline approach for document-level retrieval with stopword removal and disabled stemming used in section . . . • topx-co-proximity-articleonly: this run re-ranks the results of the baseline run coined topx-co-baseline-articleonly by adding the proximity score con- tribution scoreprox as described in section . . . we use gaps of size for . xml : id= : id= : id= k: id= # characters figure . : example: illustration for metric p[#characters]. section and p elements. this run is comparable to the gap-enhanced approach ( ) used in section . . . due to the limited number of submittable runs to inex , we could not evaluate different gap sizes. • topx-co-focused-all: this element-level run considers the terms in the title of a topic without phrases and negations, allowing all tags for results. note that, unlike our contributions from earlier years (e.g., [bstw ]), we do not use a tag-specific ief score, but a single global ief value per term. we demonstrated in [bs b] that this achieves better result quality for co queries than tag-specific ief values (cf. section . . ). run/metric ip[ . ] ip[ . ] ip[ . ] ip[ . ] maip topx-co-baseline-articleonly . . . . . topx-co-proximity-articleonly . . . . . topx-co-focused-all . . . . . table . : results: focused task inex , stopword removal, no stemming. table . shows the results for these runs. it is evident that element-level retrieval generally yields a higher early precision than document-level retrieval, but the quality quickly falls behind that of document-level retrieval which means that results become significantly worse than article-only runs starting at a recall level of . . this is reflected in the results: while the element-level run topx-co-focused-all ranks at position among runs, the document-level runs rank at position (topx-co-baseline-articleonly) and position (topx-co-proximity-articleonly) among runs, the last one being our best submitted run. proximity scoring with gaps can in general help to improve early precision with document-level retrieval. maip val- ues are almost equal for the document-level baseline topx-co-baseline-articleonly and the gap-enhanced model topx-co-proximity-articleonly. . extensions our experiments in sigir [bs b] showed significant improvements of the gap-enhanced approach ( ) over the baseline. unfortunately, at inex [bst ] comparable runs did not demonstrate equally significant improvements (significance levels are p= . % and . % for paired t-test and wilcoxon signed rank test, re- spectively). as the ip metric returns the maximally achievable precision after the returned re- sults have reached a recall level of at least x, this metric hides the points in the result sets where the retrieval quality originates from. therefore, for analytical reasons, we have a look at the results using an alternative metric that measures the precision af- ter x characters, abbreviated as p[x characters]. figure . provides an example to illustrate how that alternative metric works. assume that we want to calculate the precision value after , characters, p[ , characters]. we think of the result set as a characterwise concatenation of results for a given run; the evaluation measures the precision after reading the first , characters which corresponds to the retrieved number of characters carrying relevant content divided by the number of retrieved characters. figure . characterwise aligns rectangles that represent the retrieved doc- uments of a fictitious run, relevant characters are represented as yellow boxes. the first retrieved document of that fictitious run has id and consists of characters where the first characters are considered relevant. the second retrieved document with id consists of characters of which characters are relevant. as just the first characters of the third document fit into the , characters limit, this document cannot generate a positive contribution to the precision (the relevant portion of this document starts after characters only). hence, the value for p[ , characters] is calculated as + , = . . figure . depicts the precision values after x characters for each of the three runs. it turns out that if we are interested in retrieving just a small amount of characters, it is worth considering to use the element-level run (leading up to , characters). then the result quality of the element-level run deteriorates quickly and the proximity run outperforms the two other runs. only very late, after , read characters, the baseline yields a slightly higher precision than the proximity run. hence, to improve the retrieval quality, a hybrid approach could return the first , characters from the element-level run and fill the remaining characters with results from the proximity run. . phrases by means of a case study, we rigorously analyze the potential of explicit phrases for retrieval quality and compare it to the proximity score used in [sbh+ ]. this part is based on our work published in [bbs ]. . . evaluating the potential of phrases phrases, i.e., query terms that should occur consecutively in a result document, are a widely used means to improve result quality in text retrieval [cct , ctl , fag , . phrases . . . . . . . . . #characters p [# ch ar ac te rs ] topx-co-baseline-articleonly topx-co-proximity-articleonly topx-co-focused-all figure . : comparison of the three runs: p[# characters] values. llym , mdr ], and a number of methods has been proposed to automatically iden- tify useful phrases, for example [llym , z+ ]. however, there are studies indicating that phrases are not universally useful for improving results, but that the right choice of phrases is important. for example, metzler et al. [msc ] reported that phrase detection did not work for their experiments in the trec terabyte track, and mitra et al. [mbsc ] reported similar findings for experiments on news corpora. the remainder of this chapter experimentally analyzes the potential of phrase queries for improving result quality through a case study on the trec terabyte bench- mark. we study the performance improvement through user-identified and dictionary- based phrases over a term-only baseline and determine the best improvement that any phrase-based method can achieve, possibly including term permutations. experimental setup we did a large-scale study on the effectiveness of phrases for text retrieval with the trec gov collection, and the topics from the trec terabyte tracks – (topics – ) where we used the title only. more details about the collection and trec can be found in section . . . all documents were parsed with stopword removal and stemming enabled. we compared different retrieval methods: • a standard bm f scoring model [rzt ] as established baseline for content- . extensions based retrieval, with both conjunctive (i.e., all terms must occur in a document) and disjunctive (i.e., not all terms must occur in a document) query evaluation. the boosting weights are chosen as depicted in table . and the same as the ones used in the gov parser of the topx search engine [tsw ]. • phrases as additional post-filter on the results of the conjunctive bm f, i.e., results that did not contain at least one instance of the stemmed phrase were removed. as the trec topics do not contain explicit phrases, we considered the following ways to find phrases in the queries: – we performed a small user study where five users were independently asked to highlight any phrases in the titles of the trec queries. – as example for a dictionary-based method for phrase detection, we matched the titles with the titles of wikipedia articles (after stemming both), follow- ing an approach similar to the wikipedia-based phrase recognition in [z+ ]. – to evaluate the full potential of phrases, we exhaustively evaluated the re- trieval quality, i.e., precision for results, of all possible phrases for each topic and chose the best-performing phrase(s) for each topic. – to evaluate the influence of term order, we additionally considered all pos- sible phrases for all permutations of terms and chose the best-performing phrases, potentially after permutation of terms, for each topic. • a state-of-the-art proximity score by büttcher [bcl ] (described in section . . ) as an extension of bm f, including the modifications from [sbh+ ]. this score outperformed other proximity-aware methods on trec terabyte; a thor- ough comparative experimental evaluation of various proximity-enhanced scoring models can be found in section . . we additionally report the best reported results from the corresponding trec terabyte tracks, limited to title-only runs. when we checked for significant improvements over the baseline bm f (conjunctive), we used both the wilcoxon signed rank (wsr) test and the paired t-test. results our small user study showed that users frequently disagree on phrases in a query: on average, two users highlighted the same phrase only in % of the queries, with individual agreements between % and %. for each topic with more than one term, at least one user identified a phrase; for topics, each user identified a phrase (but possibly different phrases). the same user rarely highlighted more than one phrase in a topic. overall, our users identified different phrases in the topics. our experimental evaluation of query effectiveness focuses on early precision. we aim at validating if the earlier result by [mbsc ] (on news documents) that phrases do not significantly improve early precision is still valid when considering the web. . phrases tags weight title h , h h -h , strong, b, caption, th a, meta, em, i, u, dl, ol, ul . table . : boosting weights bm f. bm f user user user user user topics (conjunctive) - (trec ) . . . . . . - (trec ) . . . . . . - (trec ) . . . . . . average . . . . . . table . : p@ for user-identified phrases. table . shows precision values for the top- results when using the phrases identified by the different users (as strict post-filter on the conjunctive bm f run). surprisingly, it seems to be very difficult for users to actually identify useful phrases, there hardly is any improvement. in that sense, the findings from [mbsc ] seem to be still valid today. in the light of these results, our second experiment aims at exploring if phrase queries have any potential at all for improving query effectiveness, i.e., how much can result quality be improved when the ‘optimal’ phrases are identified. tables . and . show the precision at results for our experiment with the different settings introduced in the previous section, separately for each trec year. bm f bm f best user wikipedia topics (conjunctive) (disjunctive) phrases phrases - (trec ) . . . . - (trec ) . . . . - (trec ) . . . . average . . . . table . : p@ for different configurations and query loads, first part. it is evident from the tables that an optimal choice of phrases can significantly improve over the result quality of the bm f baseline, with peak improvements between % and % when term order remains unchanged, and even % to % when term permutations are considered . topics where phrases were most useful include “pol pot” ( ), “pet therapy” ( ) and “bagpipe band” ( ) (which were usually identified by users as well). on the other hand, frequently annotated phrases such as “doomsday cults” ( ) and “domestic adoption laws” ( ) cause a drastic drop in performance. interesting examples for improvements when permuting terms are ”hybrid alternative both significant according to a paired t-test and wilcoxon signed rank test, p ≤ . . extensions bm f proximity best best phrases best title-only topics (conj.) score phrases +permutations trec run - (trec ) . . . . . - (trec ) . . . . . - (trec ) . . . . . average . . . . . table . : p@ for different configurations and query loads, second part. fuel cars“ ( ) where the best phrase is actually “hybrid fuel” (with a p@ value of . , compared to . for the best in-order phrase and . for term-only evaluation in the form of bm f (conjunctive)), and “reintroduction of gray wolves” ( ) with p@ of . with the phrase “wolves reintroduction”, compared to . otherwise (amongst others: reintroduction of “gray wolves”). the best possible results are way above the best reported results for and and get close to the best result from (which was achieved, among other things, by the use of blind feedback) . wikipedia-based phrase recognition, a simple automated approach to phrase recognition, only leads to significant improvements for (paired t-test and wilcoxon signed rank test, p≤ . ). for the remaining years we cannot observe significant improvements. interestingly, the proximity-aware score yields significant improvements over the baseline ; as it automatically considers “soft phrases”, there is no need to explicitly identify phrases here. discussion and lessons learned the experimental analysis for phrase queries in this section yields the following results: • we validated the common intuition that phrase queries can boost performance of existing retrieval models. however, choosing good phrases for this purpose is nontrivial and often too difficult for users, as the result of our user study shows. • existing methods for automatically identifying phrases can help to improve query performance, but they have their limits (like the methods based on wikipedia titles evaluated here). while we expect that more complex methods (such as the advanced algorithm introduced in [z+ ]) will get close to the upper bound, they need to include term permutations to exploit the full potential of phrases. the common intuition that term order in queries bears semantics does not seem to match reality in all cases. • proximity-aware scoring models where the user does not have to explicitly identify phrases can significantly improve performance over a non-proximity-aware scoring model. no significance tests possible as we do not have per-topic results for these runs paired t-test and wilcoxon signed rank test, p≤ . for trec and p≤ . for the other two chapter top-k vs. non-top-k algorithms this chapter starts with section . that presents various top-k algorithms from the database systems community; they are classified according to the access methods to index lists required by the algorithms. section . describes exact top-k algorithms (with and without term proximity component) and approximate top-k algorithms from the information retrieval community. the chapter concludes with section . that explains some non-top-k algorithms. . top-k algorithms from db top-k algorithms aim at efficiently assembling a ranked list of the k objects that match best the user need expressed by means of a top-k query. in the scenarios used through- out this thesis, objects may represent either elements of xml documents or full doc- uments. to process top-k queries efficiently, a number of query processing techniques has been proposed over the last two decades (e.g., [fag , fln , cwh , mbg , gbk , bgm ]). to score an object, a score aggregation function f aggregates all known scores from different dimensions for this object. assume that we want to aggregate scores for two objects oi and oi′ . an aggregation function f is called monotone if f(si , . . . ,sim) ≤ f(si′ , . . . ,si′m) when sij ≤ si′j for every dimension j, where sij and si′j are the scores from dimension j for object oi and oi′ , respectively. the following descriptions assume that top-k algorithms have access to a set of m inverted lists l = {l , . . . ,lm} that represent one out of m score dimensions each. these algorithms assume that the scores for objects in each dimension j have been precomputed and stored in an inverted list lj which is sorted by descending score, i.e., lists start with objects having high scores and end with objects having lower scores. while a sorted access (also called sequential access) denotes an access to an object and its score during a sequential scan of a list, a random access denotes a direct access to an object and its score by the object identifier. some algorithms use random lookups for promising candidates in dimensions where they have not yet been encountered; as such a random access (ra) is a lot more expensive than a sorted access (sa) (in the . top-k vs. non-top-k algorithms order of to , according to [bms+ ]), an intelligent schedule for these ras has a great impact on efficiency. the cost of one sa and one ra is denoted cs and cr, respectively. in [fag ] fagin defines the middleware cost as cs · #sa + cr · #ra which corresponds to the query execution cost. algorithms from the family of threshold algorithms are similar to dynamic pruning approaches from the ir community. they start with a phase of sequential scans to each list involved in the query execution in an interleaved, round-robin manner. pro- cessing lists in a round-robin manner characterizes the sequence in which lists are read: (l ,l , . . . ,lm,l , . . .), i.e., circular reads to each list, one after the other. as docu- ments are discovered in this process, they are maintained as candidates in an in-memory pool, where each candidate has a current score also called worstscore (aggregated from the scores in dimensions where the document has been encountered so far). addition- ally, each candidate object oi has an upper score bound that is computed by setting all unknown scores to the highest possible score highj corresponding to the score at the current scan position (i.e., the last sequentially accessed tuple) of each list lj : bestscore(oi) = f(pi ,pi , . . . ,pim), where pij = sij if oi has been seen in lj and pij = highj otherwise. pij is called predicate of object oi in dimension j, s(oi) denotes those lists in l where oi has been seen, s̄(oi) those lists in l where oi has not been encountered yet. a common choice for a monotonous aggregation function f is simple summation. then, bestscore is defined as follows: bestscore(oi) = m∑ j= ( sij if lj ∈ s(oi) highj if lj ∈ s̄(oi) ) . ( . ) to evaluate a top-k query, the algorithms typically maintain two priority queues: a priority queue (ordered by decreasing worstscore) that maintains a list of the k candidates with the highest worstscore values called the (intermediate) top-k results r, and another priority queue (ordered by increasing bestscore) that maintains the list of remaining candidates c that have the potential to qualify for the final r. the lowest worstscore of any object in r is named min-k. candidates whose bestscore is not greater than min-k (i.e., the head of r), can be safely removed from c. the execution stops if all candidates in c have been eliminated and no unseen document can qualify for the final results; this is typically the case long before the lists have been completely read. an excellent survey about top-k query processing techniques in the database systems area has been authored by ilyas et al. [ibs ]. one way to classify these techniques is by the access methods to index lists required by the algorithms: . sorted and random accesses to every list. . top-k algorithms from db . no random accesses, only sorted accesses. . sorted accesses with carefully scheduled random accesses. marian et al. [mbg ] categorize sources (index lists) by their supported access meth- ods: while s-sources provide sequential accesses only, r-sources provide random ac- cesses only, and sr-sources provide both sequential and random accesses. . . sorted and random accesses the algorithms described in this section use sorted as well as random accesses to lists. this means that all lists have to be sr-sources. fagin’s algorithm (fa) [fag ] proceeds in two rounds. in a first round, it performs sorted accesses to all lists in a round-robin manner until at least k objects have been fully evaluated. in a second round, for the remaining objects that have been encountered in at least one, but not all dimensions by sorted accesses, it performs random accesses to the lists representing the missing dimensions. finally, the aggregation function f is applied to all seen objects and the objects are sorted such that the k objects with the highest scores can be returned. the threshold algorithm (ta) [fln ] performs sorted accesses to all lists in a round-robin manner. when a new object o is seen by a sorted access to list lx, ta performs random accesses to the remaining lists - therefore, it can compute the final score for o immediately. o is kept in the intermediate top-k results r iff it belongs to the k highest scores seen so far. c is always empty! after each round of sequential accesses, the highi values of the lists change, and the threshold value τ has to be updated: τ is calculated by combining the scores of the items read by the most recent sorted access to each list (i.e., highi for each list li) in a monotone aggregation function f. if τ underscores the min-k score (the lowest worstscore of the intermediate top-k results), the algorithm can safely terminate as no not yet seen object will be able to overscore the min-k score and thus make it to the top-k results r. the algorithm assumes that one sorted access has the same cost as one random access which is not valid in the cost model, but just influences ta’s runtime behavior: this can lead to very expensive executions as the number of random accesses is not restricted and every sorted access can induce up to m- random accesses. the quick-combine algorithm [gbk ] is a variant of ta. it uses an indicator Δi = ∂f∂pi · (si(di − c) − si(di)) which estimates the utility to read from list li. the indicator considers ) the influence of the predicate pi used in list li on the overall score f and ) the decay of the score in li over the last c steps which decreased the upper bound for not yet seen objects (i.e., si(di − c) − si(di)). the algorithm chooses the list with maximal Δi and works particularly well for skewed data. like fa and ta, the combined algorithm (ca) [fln ] performs sorted accesses to all lists in a round-robin manner. it makes use of the cost ratio between random and sorted accesses, γ = �cr/cs�: every time the depth of sorted accesses increases by γ, it picks the object o with missing information whose bestscore is largest and performs . top-k vs. non-top-k algorithms random accesses to all lists where o has not been encountered yet, short all lists in s̄(o). the algorithm can safely terminate if it has seen k objects and no object outside the top-k results r has a bestscore that overscores the min-k score and thus may make it to r. this includes the bestscore of the virtual document defined as f(high , . . . ,highm). the algorithm assumes that random accesses are more expensive than sorted accesses. each of the picks for random accesses induces up to m − random accesses as for ta; however random accesses are only triggered every γ sequential accesses. one can view ca as a merge between ta and nra (cf. section . . ). if γ is very large (e.g., larger than the number of objects in all lists), ca corresponds to nra. if γ = , ca is similar to ta: while ca performs ras to all lists in s̄(o) for some object o, ta performs ras to all lists in s̄(o) for every object o seen during round-robin sorted accesses. . . no random accesses algorithms in this category only support sorted accesses and do not make use of random accesses. this means that all lists have to support sorted accesses (i.e, they are s-sources or sr-sources). the no random access algorithm (nra) [fln ] performs sorted accesses to all lists in a round-robin manner. for each seen object, it keeps track of its bestscore and worstscore and the most recently seen scores highi per list li. the algorithm can safely stop when at least k objects have been seen and for all objects o that are not in the top-k results r (including the virtual document) holds bestscore(o) ≤ min-k. the stream-combine algorithm [gbk ] is similar to the nra algorithm but favors sorted accesses to those lists that are more likely to lead to early termination than others. to estimate the utility of reading next from list li, it uses an indicator similar to the one used in the quick-combine algorithm Δi = #mi · ∂f∂pi · (si(di − c) − si(di)). this indicator also considers the cardinality of mi, the subset of the intermediate top-k results r whose bestscore would be decreased or whose precise score would be known after reading from list li. . . carefully scheduled random accesses algorithms in this category require that at least one list is sequentially accessible (i.e., the list is an s-source or an sr-source) to get an initial set of candidate objects that may make it into the final top-k results. the upper and pick algorithms [bgm , mbg ] have been proposed in the context of web-accessible sources categorized by their supported access methods. the upper algorithm [bgm ] fills the bestscore-ordered candidate queue c us- ing round-robin sorted accesses to sorted sources (s-sources and sr-sources). in each round, it checks whether c has run empty or the object otop with the highest bestscore in c underscores the threshold τ defined as f(high , . . . ,highm) (i.e., the bestscore of an unseen document). if one of these two conditions holds, the upper algorithm performs a sorted access and inserts the read object o into the candidate queue c or updates o’s bestscore (if it has already been in the queue). given the new highi value, . top-k algorithms from db τ can be updated. if the score of o is final (i.e., bestscore(o) = worstscore(o)), o is returned as a member of the top-k results. if none of these two conditions holds, the algorithm selects the best source for otop to perform a random access which can come in different implementations. the algorithm stops iff k objects have been returned. the pick algorithm [mbg ] chooses the object o with the largest difference between worstscore(o) and bestscore(o) to perform a random access. the source to be probed for o is randomly chosen from the set of sources that represent a score dimension not yet known during the evaluation of o. the minimal probing (mpro) algorithm [cwh ] works in two phases, ) the ini- tialization phase which performs only sorted accesses and ) the probing phase which performs random accesses to complete scores. the initialization phase uses sources that provide sorted access to fill the candidate queue c with objects. before inserting each object, the mpro algorithm assigns a bestscore value to the object that considers the maximum scores of the remaining, expensive sources representing unknown score dimensions. in each iteration, the probing phase removes the object o with the highest bestscore from the candidate queue and probes its next unevaluated source. if the evaluation for o is complete, o is returned as part of the top-k results, otherwise it is reinserted into the candidate queue. the algorithm stops as soon as k objects have qualified for the top-k results. finding the optimal probing schedule for each object is an np-hard problem: thus, optimal probing schedules are approximated using a greedy approach that relies on benefit and cost of each predicate obtained by sampling of ranked lists at query startup time. the authors prefer global scheduling (i.e., the prob- ing sequence is the same for every object) since per-object scheduling would generate the n-fold cost, given n objects in the database. in contrast to the upper algorithm, mpro expects as input a fixed schedule of accesses to r-sources fixed during the initial sampling phase [mbg ]. thus, during query processing, it selects only the object to probe next, but avoids source selection at run time that is necessary for upper. assum- ing that a sorted access is cheap, this algorithm aims at minimizing the cost of random accesses. io-top-k [bms+ ] processes index lists in batches of b sorted accesses which are distributed across the index lists. the authors reuse the cost model (middleware cost) introduced by fagin in [fag ] which makes cs · #sa + cr · #ra the overall objective function. the goal of sa scheduling is to optimize in each batch the individual batch sizes bi across all lists, such that some benefit function is maximized and ∑ i∈{ ,...,m} bi = b which is equivalent to solving the np-hard knapsack problem. the authors propose two strategies to handle the problem. the knapsack for score reduction (ksr) method aims at reducing highi values as quickly as possible as low highi values allow earlier candidate pruning. given the current scan positions in the index lists and a budget b, the goal is to find a schedule of individual batch sizes per list such that the total expected reduction of bestscore values for all candidates is maximized. bestscore values are estimated using histograms, assuming uniformly distributed scores. besides, the optimization expects that the probability of seeing a particular document in list li . top-k vs. non-top-k algorithms where it has not been encountered yet is (close to) zero as only a small part of a list (i.e., bi entries) is scanned in the next batch. thus, the expected reduction of that document’s bestscore corresponds to the estimated delta (with the help of histograms) in highi for bi read entries in li. the knapsack for benefit aggregation (kba) method performs typically better than ksr, uses the notion of benefit per candidate, and aggregates all candidates’ benefits to decide about bi choices. the goal is to achieve low sa costs in the overall objective function. like ksr, it uses histograms and current scan positions but also uses knowledge (obtained by the scans so far) about the candidate under view. the goal of ra scheduling is ) to increase min-k in the beginning and ) clarify scores for candidates to allow early termination in later stages. the authors propose two strategies coined last-probing and ben-probing. last-probing proceeds in two phases: the first phase consists of several rounds of sas, the second phase performs only ras. the second phase is started iff ) the expected cost for ras is less than the number of all sas done up to that point and ) ∑m i= highi ≤ min-k. the first condition aims at balancing the costs of sas and ras, the second condition ensures that all top-k items have been seen at this point. ben-probing uses a probabilistic cost model to compare the benefit of performing ras against performing sas. costs are compared every b steps when sa scheduling has to be done anyway. the most efficient variant, coined rr-last mode, does round-robin sequential ac- cesses and schedules all ras only at the end of the partial scans of inverted lists, namely, when the expected cost for ras is below the cost of all sequential accesses so far. . top-k algorithms from ir besides top-k algorithms from the database systems area (cf. section . ), there are also approaches for top-k query processing in the information retrieval domain (e.g., [am , bch+ b, sc , tmo , ds ]). following the classification by ding and suel [ds ], indexes can be organized in different ways: • document-sorted: the postings in each inverted list are sorted by docid. • impact-sorted: the postings in each inverted list are sorted by their impact, i.e., their influence on the score of a document which assumes that the scoring function is decomposable (i.e., one can sum up contributions of single term entries). • impact-layered: the postings are organized in layers, with postings in layer i having a higher impact than the ones in layer i+ . each layer’s entries are sorted by docid. in impact-sorted and impact-layered indexes the postings with the highest impact can be found at the start of the inverted lists such that they are read first during query processing. this property makes impact-sorted and impact-layered indexes popular for early termination algorithms. impact-sorted indexes cannot use docids for compression . top-k algorithms from ir since docids increase and decrease with decreasing impact. they can be compressed if the number of distinct impacts is small or if small integer numbers are used as impacts. impact-layered indexes which employ a small number of layers may be better to com- press, but do not reach the same compression level as document-sorted indexes whose docid gaps are smaller. only very few early termination techniques use document-sorted index structures. the ir community usually categorizes index traversal approaches as follows: • daat (document-at-a-time): the postings of document dj are processed before the postings of document dj+ . each document is assigned a final score before the next document is scored and a set of the k documents with the currently highest scores is maintained. • taat (term-at-a-time): the inverted list of query term ti is processed before the inverted list of query term ti+ . documents’ partial scores are maintained in so-called accumulators which keep both candidates c and (intermediate) top-k results r. as taat approaches do not know the final scores of objects imme- diately, but maintain partial scores instead, the memory footprint is larger for taat than for daat approaches. • saat (score-at-a-time): this approach is neither strictly taat nor daat. all inverted lists are open at the same time and pointers to list entries that make larger contributions to document scores are processed first. it requires the index structures to be organized in an impact-sorted or impact-layered form. . . exact top-k algorithms from ir this subsection elaborates on top-k algorithms from the ir community that deliver exact top-k results, but do not involve proximity scores. anh and moffat [am ] propose dynamic pruning methods that use impact-layered indexes. for each document, all queryable terms are sorted by decreasing term fre- quency value within that document. given the ordering, each term in the document is assigned an impact between an upper limit u (decided at indexing time) and . the number of terms assigned to lower valued layers is exponentially growing. stop words are always assigned the lowest impact . considering a document with nd distinct terms, of which ns stop words, the base of the layer is defined as b = (nd − ns + ) /u. the layers contain (b− )bi items, where i ∈ { , . . . ,u− }; in [am ] anh and moffat choose u = . this approach allows a high compression and storage of documents in impact order. the index structure resembles the inverted block-index structure used by bast et al. for io-top-k [bms+ ] (section . ). bast et al. partition each index list into blocks, which are ordered by descending score. within each block, index entries are stored in item id order which is comparable to document-sorted partial indexes. the authors describe a pruning method that proceeds in four stages and relies on an saat approach with an impact-layered index. the algorithm maintains accumulators that keep track of candidate documents c (and their worstscores) which may qualify . top-k vs. non-top-k algorithms for the top-k results r. furthermore, it keeps track of the current top-k results r, the min-k score (i.e., the lowest worstscore among the items in r, worstscore(rk)). ri denotes the result at rank i, i.e., the result with the ith largest score. for each list li, the impact of the next not yet processed document in the inverted list is stored as nexti. as aggregation function anh and moffat use the commonly used simple summation. the algorithm runs in four phases: the initial or phase accepts new candidates to be added. the subsequent and phase only updates already existing candidates and top-k results but does not add new ones. the refine phase only considers documents that are in the top-k results and reorders them. the final ignore phase ignores the remainder of all inverted lists. the initial or phase can be quit if no document that is not yet in c or r (i.e., that has not yet been read in an inverted list), can make it to the final top-k results r which holds if min-k ≥ ∑ li∈l nexti. this criterion corresponds to the stopping criterion for the virtual document o applied in the nra (section . . ): bestscore(o) ≤ min-k with bestscore(o) = f(high , . . . ,highm) and highj = nextj . the subsequent and phase can be left when the set of top-k results will not change any more: min-k ≥ max{bestscore(d) : d ∈ c,d �∈ r}, where bestscore(d) = worstscore(d) + ∑ lj∈s̄(d) nextj. this criterion corresponds to the stopping criterion for all candidate objects applied in the nra. the refine phase can be stopped when the sequence of the top-k results will not change any more. this holds if for all top-k documents the bestscore of the document at rank i is not larger than the worstscore of the document at rank i − : ∀ri,ri− ∈ r,i ≤ k : bestscore(ri) ≤ worstscore(ri− ). the final ignore phase can ignore all remaining postings then. in addition, the authors propose a method which limits the number of entries read after the or phase and reaches precision@ values comparable to the algorithm just described, already when stopping reading inverted lists after % of the entries that have not been read during the or phase. the method features low memory requirements and is way faster than exhaustive evaluation since only needed fragments of inverted lists are transferred from disk. strohman and croft [sc ] keep the entire index in main memory to avoid expensive random accesses to disk such that their query processing cost is determined by the number of read bytes. the impact-layered index uses the same impact model as anh and moffat, with only eight different integer valued term weights [am ]. the index . top-k algorithms from ir is organized in segments where every segment contains a set of documents sharing the same impact value. each segment is document-sorted. the algorithm is based on anh and moffat’s approach adding some optimizations: while anh and moffat’s algorithm prunes candidates only once, once the top-k results are known (just before the refine phase starts), strohman and croft eliminate candi- dates after each inverted list segment has been processed: document d can be removed from the candidates if min-k ≥ bestscore(d); doing so, the number of candidates to be updated can be reduced earlier. in addition, the authors propose a technique to optimize the list-length depen- dent skipping distance such that inverted list skipping can be applied during both the and and the refine phase. as both accumulators and inverted list segments are document-sorted, large sections in the inverted lists not worth decoding can be identi- fied and skipped. the wand approach devised by broder et al. [bch+ b] uses a document-sorted index with daat-based query processing. it maintains a list of top-k items r scored so far, sorted by decreasing score, and sets the threshold τ to the score of the kth item, rk. (scores of items are always complete scores, i.e., bestscore=worstscore.) furthermore, for each inverted list, the algorithm keeps track of the current scan position as well as the maximum score in the respective list. the algorithm uses pivoting in order to skip postings and proceeds in multiple iterations: at the beginning of each iteration, the pointers to the inverted lists are ordered by ascending current docid. then the inverted lists’ maximum scores are aggregated (in the sequence of the ordered pointers), one after the other, until τ is exceeded. the term corresponding to the inverted list where τ has been exceeded is called pivot term, and the current document in the respective inverted list is called pivot document; the pivot document has the smallest docid with the chance to exceed τ. however, the pivot document is only valid, if the current docids of all preceding inverted lists are equal to the pivot docid. then the corresponding document can be scored. otherwise, the cursor of one of the preceding term lists is moved to the pivot docid and the next iteration can start. ding and suel’s block-max wand (bmw) algorithm [ds ] is a state-of-the-art daat algorithm that uses dynamic pruning and which is based on the wand algo- rithm. the focus of [ds ] is on top-k early termination query processing (in the sense of non-exhaustive evaluation) using main-memory based index structures. the authors devise an inverted index structure called block-max index which sorts the inverted list in docid order like the input for the wand algorithm, but organizes the compressed inverted list in blocks. for each block, it stores the maximum impact score of a posting in the block in an uncompressed form to allow skipping long list parts. the inverted lists’ block size is or documents (postings) and supports decompressing individual blocks. there is an additional table outside the inverted list blocks (to avoid cache line effects) that stores the maximum (or minimum) docid and the block size. storing this extra information only slightly increases the index size. for the wand algorithm, skipping is limited because the inverted indexes only store . top-k vs. non-top-k algorithms the maximum impact score of the entire list. storing the maximum impact score per block for block-max indexes enhances the skipping known from the wand algorithm. this way, the upper bound approximation of document impact scores can be lowered and large performance improvements achieved. the authors distinguish between deep pointer movement in an inverted list which usually involves block decompression and shallow pointer movement which moves the current pointer to the corresponding block without decompressing the block. to this end, the shallow pointer movement relies on the block boundary information stored in the additional table. as stated before, the bmw algorithm is based on wand and thus uses pivoting in order to skip postings and proceeds in multiple iterations: before evaluating a pivoting docid, first the shallow pointers are moved to check whether the document can make it to the top-k based on the maximum score per block. if not, another candidate is chosen. instead of moving the cursor in one list to pivot docid+ , ding and suel choose d′ = min{c , . . . ,cp− ,cp}, where c to cp− are the block boundaries plus one of the first p− lists and cp is the current docid in the pivot term list. this approach greatly improves skipping compared to moving the cursor in one list to pivot docid+ . ding and suel experimentally validate that the basic bmw algorithm outperforms their implementation of strohman and croft’s approach which is again faster than the wand approach. extensions include an impact-layered index organization and docid reassignments. the idea of docid reassignments is to give similar web-pages close docids to improve index compression. ding and suel attribute docids by alphabetical ordering of the urls as in their earlier work with yan [yds b]; it seems that after reassignment, documents in the same block tend to have more similar scores which in addition helps to speed up query processing. the average speed is still slightly slower than for exhaustive conjunctive evaluation, but the difference is greatly narrowed. the goal of impact-layered index organization here is to put high-scoring documents in the same layer and thus avoid spiky scores in the remaining layers. this approach is supposed to avoid reading as many blocks in the remaining layers as possible during the execution of the bmw algorithm. the impact-layered index is split into n layers and each layer is treated like a separate term with the disadvantage of the larger number of terms per query. ding and suel choose n= to avoid decreasing performance, only lists with at least , postings are split with % of the postings added to the first layer. that way runtime can be decreased further, almost meeting the average speed of exhaustive conjunctive evaluation. . . exact top-k algorithms from ir with a term proximity com- ponent this subsection presents approaches that deliver exact top-k results and incorporate some term proximity scoring into dynamic pruning. there has been little work pub- lished that incorporates proximity scores to accelerate top-k text retrieval. [zslw , . top-k algorithms from ir zsyw , ysz+ ] use a combination of term as well as term proximity scores simi- lar to the solution presented later in chapter and make additional use of pagerank scores. [zslw ] propose a pagerank ordered index structure that segments in- dex entries based on the tags that surround the text the index entry has been gen- erated from. this results in a long body tag segment and a short segment for all remaining tags. an extension of this index structure splits the body tag segment in two segments, based on whether a document’s term weighting score exceeds or underscores a threshold score. a very recent approach to use term pair indexes to improve bounds in top-k text retrieval was presented in [ysz+ ] which focuses on the index building and query processing with term-pair indices on every local ma- chine of a cluster. they use an order-aware proximity score resulting in two term pair lists per term pair. like [zslw , zsyw ], the approach is only applicable for two-term-queries. to keep the ranking flexible [ysz+ ] store position informa- tion while we make use of an integrated proximity score (cf. section . . ). our approximate approach that we will present in chapter elaborates on the trade-off between index size and result quality which was not mentioned in [ysz+ ]. in con- trast to [zslw , zsyw , ysz+ , sbh+ , bs ], [tmo ] do not create term pair lists statically but dynamically during query processing to save on disk space. document-sorted term pair posting lists are generated from two document-sorted sin- gle term lists by a merge join-based operation. to save on i/o operations, only single term lists are read from disk and decompressed: i.e., the pointer of the list with the minimum current docid in two document-sorted single term lists is moved. if the two pointers point to the same document, this document qualifies for the term pair list. the authors analyze two existing daat dynamic pruning strategies, maxscore (terminates one item’s scoring if its score cannot exceed min-k) and wand (cf. section . ), and modify them to support proximity scores. they accelerate maxscore and wand in a two-stage approach: in a first stage, only single term posting lists are processed like in wand or maxscore. in a second stage, term pairs are subsequently processed using early termination (with the maxscore strategy). the order-aware proximity score uses the sequential term dependence (sd) model for markov random fields [mc ] (cf. section . . ). for all pairs of adjacent query terms it captures the number of exact phrase occurrences and term pair occurrences in a text window of size for a document d. in [mot ], the upper bound of a term pair (ti, ti+ )’s frequency is approximated by the maximum term frequency in the term post- ing lists l(ti) and l(ti+ ): min(maxd∈l(ti)(tf(ti,d)),maxd∈l(ti+ )(tf(ti+ ,d))) as no term pair can occur more often in a document than the least frequent of the constituent terms. if a term pair posting is selected for scoring, the exact term pair frequency for a text window size is computed using position lists in both single term posting lists. otherwise, this computation can be avoided. . top-k vs. non-top-k algorithms . . approximate top-k algorithms from ir while the approaches described above compute the exact top-k results for a scoring model with queries on an indexed collection, the approaches described in this subsection just approximate the top-k results instead which is often good enough in terms of result quality. approximate top-k algorithms include probabilistic result pruning [tws ], execu- tion with limited budget [sslm+ ], and improving score bounds for proximity scores by means of pruned bigram indexes [zsyw ]. in contrast to dynamic pruning approaches which maintain full index lists and evaluate only a fragment of the indexed documents at query processing time, static pruning approaches such as [scc+ , bc ] discard postings considered not important already at indexing time. this incurs less stored information on hard disk and often opens the opportunity to keep the indexes in memory of a single machine which saves on i/o time during processing. if indexes are wisely pruned, the retrieval quality of the top-k results is comparable to dynamic pruning approaches, usually at the expense of lower recall values. [scc+ ] introduced list pruning with quality guarantees for the scores of query results, assuming top-k style queries with a fixed (or at least bounded) k. for each list l, they consider the score sk(l) at position k (the kth highest score) in l, and drop each entry from that list whose score is below � · sk(l), where <�< is a tuning parameter. they assume a given k, �, and the original score s that uses unpruned lists as input. they prove that for each query q with r < 	 terms there is a scoring function s′ such that for every document ( − �r)s(q,d) ≤ s′(q,d) ≤ s(q,d). s′ is similar to a scoring function on pruned lists except for the case that a document’s entries have been pruned away in too many dimensions such that its score becomes zero. experiments are carried out with the topics - from the ad hoc task of trec- in short and long variants: short queries use the titles only, whereas long queries use titles and descriptions. choosing � = % provides similar p@ values as on the unpruned index. [bc ] prune lists using a document-centric approach. the approach decides, based on a term’s contribution to a document’s kullback-leibler divergence from the text collection’s global language model, whether the corresponding posting should remain in the index. for each document d in the text collection their best-performing approach (dcp (λ)rel) keeps only the postings for the top-kd terms in d, where kd = �dt(d) · λ� and λ is a user-defined pruning parameter. using a pruned index with λ = . (i.e., % of each document’s terms are kept) generates a result quality slightly worse than using an unpruned bm index evaluated with the ad hoc topics from the trec terabyte track. its size of , mb corresponds to % of the size of an unpruned index. given a fixed response time, dcp (λ)rel can provide a better result quality than two other strategies at most recall levels on the trec and terabyte track test beds. the first strategy indexes a constant number of terms per document and the . non-top-k algorithms second strategy performs term-centric pruning which keeps the k best postings for the n most frequent terms. [zsyw ] combine static index pruning with dynamic pruning techniques. they use pruned uncompressed bigram indexes derived by static index pruning as an additional input to dynamic pruning top-k processing. the pruned bigram indexes lower the upper bound for term proximity scores during query processing of two-term-queries. the prun- ing technique discards ) bigrams when they are rare in the collection (as that two-term query is unlikely to be issued) and ) bigrams when both terms are rare in the collection (inducing short term indexes which can be processed quickly). a combination of the pruned bigram index and a two-segment index (i.e., high and low score segment), with each segment ordered by pagerank score, processes retrieved results most efficiently. [wlm ] propose a cascade ranking model, a sequence of increasingly complex ranking models. the first stage returns the highest scoring documents according to the first applied scoring model. each subsequent stage first prunes candidates and then refines the scoring for the remaining candidates used as input to the next stage. the authors propose rank-based, score-based, and score distribution-based prunings. unigram features and bigram proximity features (both ordered and unordered term occurrences) as proposed in [mc ] are integrated into a dirichlet and bm score, respectively. a boosting algorithm (based on adarank [xl ]) learns the cascade sequence and feature weights of the individual scoring functions. to this end it uses a tradeoff metric that weights effectiveness and efficiency (costs). the cost of a scoring model depends on the normalized average run time over a set of training queries and the input size of this stage. . non-top-k algorithms the highly efficient top-k or dynamic pruning algorithms (cf. sections . and . ) that are frequently applied for efficient query processing incur a non-negligible processing overhead for maintaining candidates and candidate score bounds, for mapping newly read index entries to a possibly existing partially read document using hash joins, and for regularly checking if the algorithm can stop. in scenarios with short index lists, this processing overhead is not necessary. instead, it is sufficient to exhaustively evaluate queries in a daat fashion. if the lists are long, one should prefer a top-k algorithm instead. the n-way merge join is a daat algorithm which receives n docid-ordered lists as input and in each join step calculates the (full) score for the document dcurrent having the next smallest not yet evaluated docid. if the algorithm is executed in the exhaustive or mode (disjunctive query evaluation), dcurrent does not have to be seen in every list. if the algorithm is executed in the exhaustive and mode (conjunctive query evaluation), the current docid must be seen in every list and the computation of dcurrent’s score can be skipped if one list pointer points to a different document. if the score is higher than the min-k value, the document is kept in a heap of candidate . top-k vs. non-top-k algorithms results, otherwise it is dropped as it cannot make it into the top-k results r any more. for every list it keeps track of the position up to which the list has been read so far and iterates to the next item if the document in this list has just been evaluated. if the items of all lists have been read completely, the algorithm terminates. once all index entries have been read, the content of the heap is returned. one commonly used approach to accelerate query processing is to perform ranking in two phases. the first phase that uses a simple and easily-to-compute ranking model (e.g., bm ) pre-selects the documents to be re-ranked in the second phase with a usually more complex, not that easily-to-compute scoring model. furthermore, using phrases is a common means in term queries to restrict the results to those that exactly contain the phrase and is often useful for effective query evaluation [ccb ]. a simple way to efficiently evaluate phrases are word-level indexes, inverted files that maintain positional information [wmb ]. there have been some proposals for specialized index structures for efficient phrase evaluation that utilize term pair indexes and/or phrase caching, but only in the context of boolean retrieval and hence not optimized for top- k style retrieval with ranked results [cp , w+ , wzb ]. there are proposals to extend phrases to window queries, where users can specify the size of a window that must include the query terms to favor documents containing all terms within such a window [mstc , pa , bays ]. however, this line of works has treated term prox- imity only as an afterthought after ranking, i.e., proximity conditions are formulated as a simplistic boolean condition (e.g., requiring query terms to appear within the user-specified window size) and optimized as separate post-pruning step after ranked evaluation. chapter casting proximity scoring models into top-k query processing . introduction the first part of this chapter describes how we can modify büttcher et al.’s scoring model to make it fit into top-k algorithm-based query processing. it is based on our work published in [sbh+ ]. there has been a number of proposals in the literature for proximity-aware scor- ing schemes summarized in chapter ; however, there are only a few proposals that efficiently find the best results to queries in a top-k style with dynamic pruning tech- niques (cf. section . . ). we show that integrating proximity in the scoring model can not only improve retrieval effectiveness, but also improve retrieval efficiency; using pruned index lists, we gain up to two orders of magnitude compared to standard top-k processing algorithms for purely occurrence-based scoring models on unpruned lists. this insight opens the door for using a light-weight n-ary merge join in combination with pruned document-sorted index lists published in [bs a] which realizes a similar speed up by one or two orders of magnitude compared to an evaluation with a top-k system such as topx [tsw ] using unpruned lists. hence, we can avoid top-k dynamic pruning techniques that maintain a candidate pool and compute best-/worstscores for result candidates to finally come up with the top-k results. besides saving the overhead costs, this simple approach keeps up the excellent precision values and saves much disk space. the second part of this chapter aims at evaluating the feasibility of the proximity- enhanced scoring models surveyed in chapter for top-k algorithm-based query pro- cessing. thereby, we try to figure out how to apply the techniques presented in the first part of this chapter to other scores. . casting proximity scoring models into top-k query processing . proximity scoring . . proximity scoring models we focus on proximity scoring models that use a linear combination of a content-based score with a proximity score as they are usually more easily decomposable into their features and thus more straight forward to index than integrated scoring models. we have described a selection of such linear combination and integrated scoring models in section . and section . , respectively. the particular scoring model we use is a scoring model proposed by büttcher et al. [bc , bcl ] (labelled büttcher’s scoring model from now on) which has been described in detail in section . . . we have experimentally validated in section . that for the web track and robust track test beds, büttcher’s scoring model is among the scoring models that provide the highest precision, map, and ndcg values. for the terabyte track test beds, it yields the highest retrieval quality for all test beds and retrieval metrics (except for topics - with the map metrics where it performs slightly weaker than song et al.’s scoring model) and for all inex test beds the high- est retrieval quality with all metrics. according to metzler [met b], an ideal model that generalizes perfectly achieves an effectiveness ratio of . while effectiveness ratios below % indicate a scoring model’s missing ability to generalize, the most reason- able retrieval models have an effectiveness ratio above %. in section . . we have demonstrated for the map and ndcg@ metrics that büttcher’s scoring model has an effectiveness ratio that overscores % which holds only for two scores in our eval- uation. all scoring models exhibit high intracollection generalization values between % and % on all test beds with both the map and ndcg@ metrics. in sec- tion . . , we have shown for both the map and ndcg@ metrics that büttcher’s scoring model exhibits a relatively low spread, but a relatively high entropy. in our setting, we think that the spread value is more meaningful than the entropy value as it measures how much retrieval quality can decrease if we choose the wrong parameter combination. an initial set of experiments aimed at validating that büttcher’s score outperformed the bm score for various parameter settings and thus shows improvements indepen- dent of the parameter choice. in particular, we wanted to find out whether the original parameter setting from [bc , bcl ] is appropriate and can be used for our exper- iments. to this end, with the topics from the trec terabyte track, ad hoc tasks and on the gov collection, we evaluated the effect of büttcher’s score over the bm score alone for combinations of values for k and b, for pre- cision at different cutoffs and map. for all experiments, the results with büttcher’s score were always at least as good as the results with bm , significantly better (with p ≤ . for a signed t-test) for configurations in precision at results, for configurations in precision at results, and always for map. we use the parame- ter setting from [bc , bcl ] (k = k = . ,b = . ), which was among the best configurations in our experiments as well. . proximity scoring . . modification of büttcher’s scoring model to include büttcher’s proximity score into query processing, it would be intriguing to use a standard word-level inverted list, i.e., an inverted list that stores with each document also the positions of the term occurrences in the document, and compute proximity scores on the fly as a document is encountered. we could use the tf(t,d) values for each query term t in d to compute a bestscore for a document: to this end we would have to ’construct’ a document that maximizes the pscore(d,q) value by putting tf(t,d) times query term t into the conceived document (we do not know the real document since we have not read the word-level inverted lists yet). this boils down to a combinatorial problem. for two-term queries {ti, tj} it is already hard to solve; if ti and tj share the same tf value in d, one has to place them alternately in the conceived document to maximize the pscore value as only non-equal adjacent query terms generate a proximity contribution. if ti and tj have different tf values in d, we first have to place the term with the lower tf value (w.l.o.g. ti) and then try to group the term occurrences of tj around the occurrences of ti. the longer the query, the more complex the combinatorial problem gets. however, this approach is not feasible in a top-k style processing as it is not possible to compute tight score bounds for candidates which in turn disables dynamic pruning and in addition the combinatorial problem does not seem to be trivial, especially for long queries. for an efficient computation of the top-k results, we need to precompute and store proximity score information in index lists that can be sequentially scanned and compute tight score bounds for early termination. the main problem with büttcher’s scoring function in this respect is that the accumulator value accd(t) is computed as a sum over adjacent query term occurrences, which is inherently query dependent, and we cannot precompute query-independent information. an additional, minor issue is that the scoring function includes the document length which cannot be easily factorized into a precomputed score contribution. to solve this, we slightly modify büttcher’s original scoring function; this does not have much influence on result quality, but allows precomputation. in addition to dropping the document length, by setting b = in the formula, we consider every query term occurrence, not only adjacent occurrences. the modified accumulation function acc′ is defined as acc′d(tk) = ∑ (i, j) ∈ qall,d(q) : pi = tk, pi �= pj idf(pj ) (i − j) + ∑ (i, j) ∈ qall,d(q) : pj = tk, pi �= pj idf(pi) (i − j) . ( . ) as the value of acc′d(tk) does not only depend on d and tk, but also on the other query terms, we still cannot precompute this value independently of the query. however, we . casting proximity scoring models into top-k query processing can reformulate the definition of acc′d(tk) as follows: acc′d(tk) = ∑ t∈q idf(t) ⎛ ⎜⎜⎜⎜⎜⎜⎜⎝ ∑ (i, j) ∈ qall,d(q) : pi = tk, pj = t, pi �= pj (i − j) + ∑ (i, j) ∈ qall,d(q) : pi = t, pj = tk, pi �= pj (i − j) ⎞ ⎟⎟⎟⎟⎟⎟⎟⎠ ︸ ︷︷ ︸ :=accd(tk,t) ( . ) = ∑ t∈q idf(t) · accd(tk, t). ( . ) we have now represented acc′d(tk) as a monotonous combination of query term pair scores accd(tk, t). we can precompute these pair scores for all term pairs occurring in documents and arrange them in index lists that are sorted by descending accd(tk, t) scores. note that term order does not play a role, i.e., accd(tk, t) = accd(t,tk). including these lists in the sequential accesses of our processing algorithm, we can easily compute upper bounds for acc′d(tk) analogously to query term dimensions by plugging in the score at the current scan position in the lists where d has not yet been encountered. the current score of a document is then computed by evaluating our modified büttcher score with the current value of acc′d, and the upper bound is computed using the upper bound for acc′d; this is correct as the modified büttcher score is monotonous in acc ′ d. . indexing and evaluation framework . . precomputed index lists and evaluation strategies our indexing framework consists of the following precomputed and materialized index structures, each primarily used for sequential access, but with an additional option for random access: • term index list (short: term list): for each single term t a list that contains an entry for each document d where this term occurs (i.e., tf(t,d) > ). this entry has the form (d.docid,scorebm (d,t)) where d.docid is a unique numerical id for document d. tl(t) denotes the term list of term t. the chosen parameters have been disclosed in section . . . • proximity index list (short: proximity list): for each single term pair (t , t ) a list that contains an entry for each document d where this term pair occurs within any text window of size w (we will discuss the window size in section . . ). this entry has the form (d.docid,accd(t , t )) where the proximity contribution of (t , t ) for d is stored in accd(t , t ). t and t are lexicographically ordered (i.e., t < t ) such that for any single term pair combination we keep the corresponding proximity list just once. pxl(t , t ) denotes the proximity list for the term pair (t , t ). . indexing and evaluation framework • combined index list (short: combined list): for each single term pair (t , t ) a list that contains an entry for each document d where this term pair occurs within any text window of size w (we will discuss the window size in section . . ). this entry has the form (d.docid,accd(t , t ),scorebm (d,t ),scorebm (d,t )) where the proximity contribution of (t , t ) for d is stored in accd(t , t ). t and t are lexicographically ordered (i.e., t < t ) such that for any single term pair combination we keep the corresponding combined list just once. cl(t , t ) denotes the combined list for the term pair (t , t ). both pxls and cls are term pair lists (short: pair lists). the order of entries in the index lists depends on the algorithm used for query processing. entries can be ordered either by docid or by descending scores (scorebm for the term lists, accd values for the term pair lists). we illustrate the layout of our index lists with score-based ordering in figure . . it depicts the term, proximity, and combined index lists which can be used to process the query {bike, trails}. d es ce n d in g sc or e b m ( , . ) ( , . ) ( , . ) ( , . ) tl(bike) tl(trails) ( , . ) ( , . ) ( , . ) ( , . ) cl(bike,trails) d es ce n d in g ac c d (t i ,t j) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) pxl(bike,trails) ( , . ) ( , . ) ( , . ) ( , . ) (d.docid, scorebm (d, ti)) (d.docid, scorebm (d, tj)) (d.docid, accd(ti, tj), scorebm (d, ti), scorebm (d, tj)) (d.docid, accd(ti, tj)) figure . : score-ordered term, proximity, and combined index lists which can be used to process the query {bike, trails} in several processing strategies. the index structures depicted in figure . can be combined into several processing strategies: • tl: this corresponds to standard, text-based retrieval (just bm scores are em- ployed) without usage of proximity scores. to process the query {bike, trails}, it uses the two term lists tl(bike) and tl(trails). • pxl: this scans only the proximity lists and uses the proximity part of our modified büttcher scoring function for ranking. to process the query {bike, trails}, this strategy uses the proximity list pxl(bike, trails). • tl+pxl: this scans proximity and content score lists (which would be the straight- forward implementation of our scoring model with a threshold algorithm). to . casting proximity scoring models into top-k query processing process the query {bike, trails}, this strategy uses the two term lists tl(bike) and tl(trails) as well as the proximity list pxl(bike, trails). • tl+cl: this strategy, which is the main contribution of this chapter, exploits the additional content scores in the cls to reduce the uncertainty about the score of documents with high proximity scores early in the process, which often allows early termination of the algorithm. we can additionally tighten the bounds when a cl for a pair (t , t ) runs empty: if a document was seen in the tl for t , but not in the cl for (t , t ), it is certain that it will not appear in the tl for t any more. to process the query {bike, trails}, this strategy uses the two term lists tl(bike) and tl(trails) as well as the combined list cl(bike, trails). we restrict ourselves to answering soft phrase queries. once indexing considering term pair occurrences in a text window has been performed, it is not possible to process strict phrase queries with a pair-based index. this means that we cannot exclude those documents from the result set that do not contain the terms from the phrase consecutively. however, proximity scores are usually higher for documents with phrase occurrences than for those without phrase occurrences. therefore, documents with phrase occurrences are not pruned away from the pair lists such that they will be very likely to be considered during query processing. query-independent weights such as pagerank weights [bp ] may be stored in term lists. as they are small in size for commonly used document collections, they may be kept even in main memory (but this has also not been considered in other papers such as [ds , sc ]). if updates are needed, the updates will just have to be carried out in one place - the term lists. there has been a noticeable amount of work using precomputed lists for docu- ments containing two or more terms to speed up processing of conjunctive queries, for example [ccks , kpsv , ls ], for centralized search engines, and [prl+ ] for distributed search engines. none of these approaches includes proximity scores, so they can only improve processing performance, not result quality. another bunch of papers deals with efficiently precomputing indexes for phrase queries [bwz , cp , wzb ], but again they do not include proximity scores. some of these consider the problem of reducing the index size while providing decent performance for most queries, usually by restricting to phrases or term pairs in frequently occurring queries. . . evaluation setup we evaluated our algorithms with the java-based, open-source topx search en- gine [tsw ] which stores index lists in an oracle database. our experiments were run using the gov collection with roughly million documents, corresponding to about gb of data (see section . . for more details). we evaluated our methods with the ad hoc topics (topic numbers - ) from the and trec terabyte track, ad hoc tasks. the topic sets are listed in tables b. and b. . as we are focusing on top-k retrieval, we measured precision values at several cutoffs. http://topx.sourceforge.net . indexing and evaluation framework to evaluate efficiency, we measured the number of sequential (sa) and random (ra) accesses to the index lists and the number of bytes transferred from disk, assuming sizes of bytes for scores and docids. as random accesses are usually much more expensive than sequential accesses, we additionally compute a byte-based abstract cost cost(γ) = #bytes(sa) + γ · #bytes(ra) for each run, based on the cost ratio γ := cr/cs of random to sequential accesses; we used γ values of and , to determine abstract costs. we indexed the documents with the indexer included in the topx system with stopword removal enabled and computed the pair lists needed for the queries with an additional tool. we ran the results with topx configured in rr-last mode and a batch size of , , i.e., round-robin sequential accesses in batches of , items to the index lists and postponing random accesses to the end. . . results table . shows our experimental results for top- retrieval with stemming enabled. configuration p@ #sa #ra #bytes(sa) #bytes(ra) cost( ) cost( , ) tl . , , , , , , , , , , , , tl+pxl . , , , , , , , , , , , , tl+cl . , , , , , , , , , , pxl . , , , , , , , , , table . : experimental results for top- retrieval of ad hoc topics from the and trec terabyte track, ad hoc tasks. it is evident that the configuration tl+cl improves p@ to . over the original bm setting (which corresponds to tl with a p@ value of . ), with a t-test and a wilcoxon signed-rank test confirming statistically significant improvements at p < . . the configuration tl+pxl with simple proximity lists achieves the same improvement in precision as it uses the same scoring function as tl+cl whereas scanning only the pxls exhibits poor result precision. we verified by additional experiments that the retrieval quality of our modification of büttcher’s scoring model was as good as the original version of büttcher’s scoring model. in addition to the improved retrieval quality of tl+cl over the tl baseline, it dra- matically reduces the number of accesses, bytes transferred, and abstract costs by a factor of to . this is due to the additional content scores available in cl and the better bounds. the configuration tl+pxl needs to run longer than tl+cl until it can safely stop. scanning only the pxls is much faster (at the expense of result quality). index/limit unpruned size(#items) required space tl . · . gb pxl/cl (estimated!) . · . tb / . tb table . : index sizes in items and required space for unpruned indexes. . casting proximity scoring models into top-k query processing table . shows the index sizes (number of list entries and required space) for term (exact) and pair lists (estimated). as the complete set of pair lists was too large to completely materialize it, we randomly sampled , , term pairs with a frequency of at least , of which about . % had a non-empty pair list. they are calculated/estimated according to the kind of data stored in the lists as described in section . . , assuming an uncompressed storage. we assume that document identifiers and scores have a size of bytes each. therefore one tl entry or pxl entry (consisting of document identifier and bm score or accumulated score, respectively) takes a size of bytes whereas one cl entry takes a size of bytes as it stores the document identifier, the accumulated score, and two bm scores. it is evident that keeping all pair lists consumes prohibitively much disk space (for the gov collection the estimated disk space to store unpruned pxl and cl indexes amounts to . tb and . tb, respectively): for large collections, the size of the inverted lists may be too large to completely store them, especially when the index includes term pair lists. as we do not consider only adjacent terms, but any terms occurring in the same document, a complete set of pair lists will be much larger than the original text collection. lossless index compression techniques (see, e.g., [dmnzby ]) are one way to solve this problem, but the compression ratio will not be sufficient for really huge collections. we therefore apply index pruning (which is a lossy index compression technique) to reduce the size of the index, while at the same time sacrificing as little result quality as possible. following the literature on inverted lists for text processing, a common way is pruning lists horizontally, i.e., dropping entries towards the end of the lists. these entries have low scores and hence will not play a big role when retrieving the best results for queries. unlike term lists, term pair lists contain many entries with very low scores (as the score depends on the distance of term occurrences), so the pruning effect on pair lists should be a lot higher than on term lists. . . results with pruned index lists our indexing framework provides three different pruning methods, mainly geared to- wards term pair lists. first, we heuristically limit the distance of term occurrences within a document, as occurrences within a large distance have only a marginal contri- bution to the proximity score. second, we heuristically limit the list size to a constant, usually in the order of a few thousand entries. third, we leverage the seminal work by soffer et al. [scc+ ] for pair lists. they introduced list pruning with quality guar- antees for the scores of query results, assuming top-k style queries with a fixed (or at least bounded) k. for each list li, they consider the score sk(li) at position k of the list, and drop each entry from that list whose score is below � · sk(li), where < � < is a tuning parameter. we first study the size of our indexes at different levels of pruning for an index (without stemming as this is an upper bound for the index size with stemming). ta- ble . shows the influence of index list pruning on the number of index items. it is . indexing and evaluation framework index/limit , , , , , unpruned tl , pxl/cl (est.) , , , , , , , , pxl/cl, accd ≥ . (est.) , , , , , , , table . : index sizes (million items) with different length limits, with and without minimum acc-score requirement. index/limit , , , , , unpruned tl . gb . gb . gb . gb . gb . gb . gb pxl (est.) . tb . tb . tb . tb . tb . tb . tb pxl, accd ≥ . (est.) . gb gb gb . gb . gb . gb . tb cl (est.) . tb . tb . tb . tb . tb . tb . tb cl, accd ≥ . (est.) . gb gb . tb . tb . tb . tb . tb table . : index sizes (disk space) with different length limits, with and without mini- mum acc-score requirement. evident that keeping all pair lists, even with a length limit, is infeasible. however, limiting the text window size to reduces the number of items in the cl index noticeably to at most a factor of - over the unpruned term index, which may be tolerated given the cheap disk space available today. we mark settings with limited window sizes by accd ≥ . ; one term occurrence of both ti and tj in a text window of amounts to an accd(ti, tj ) contribution of at least . . table . shows the index sizes (required disk space) for the very same lists. the size of tls is not a big issue as the unpruned tls only amount to . gb, and can be further downsized using maximum list lengths. the far more critical indexes are pxls and cls that exhibit the prohibitive estimated size of . tb and . tb, respectively. limiting the list size helps, although the lists remain too large. additionally restricting pxls and cls by a minimum acc-score of . finally leads to tolerable sizes between . gb and . gb for pxls and . gb and . tb for cls. as we show later in table . , excellent results can be achieved when limiting the index size to , entries per list. hence, we need less than gb of disk space to execute tl+cl( , ;accd ≥ . ) on a document collection with gb data. note that in this setting, both tls and cls keep at most , entries and cl entries require a minimum acc-score of . . additional lossless compression may further reduce the index sizes. we then evaluated retrieval quality with pruned (term and combined) index lists, where we used combinations of window-based pruning with a maximal size of , fixed- length index lists, and the pruning technique by soffer et al. [scc+ ] for k = . all measurements were done without random accesses (i.e., using nra), hence we report only a single cost value based on the number of bytes transferred by sequential accesses. additional experiments without this constraint in rr-last mode showed that topx only rarely attempts to make ras in this setting as the pruned lists are often very short: hence, rr-last degenerates into nra. table . shows the experimental results for top- queries in this setup, again with . casting proximity scoring models into top-k query processing configuration p@ #sa bytes(sa) cost tl+cl (accd ≥ . ) . , , , , , , tl ( ) . , , , , , tl ( , ) . , , , , , tl ( , ) . , , , , , tl ( , ) . , , , , , tl ( , ) . , , , , , tl ( , ) . , , , , , tl+cl ( ) . , , , , , tl+cl ( , ) . , , , , , tl+cl ( , ) . , , , , , tl+cl ( , ) . , , , , , , tl+cl ( , ) . , , , , , , tl+cl ( , ) . , , , , , , tl+cl (	 = . ) . , , , , , , tl+cl (	 = . ) . , , , , , , tl+cl (	 = . ) . , , , , , , tl+cl (	 = . ) . , , , , , , tl+cl (	 = . ) . , , , , , , tl+cl ( ; 	 = . ) . , , , , , tl+cl ( , ; 	 = . ) . , , , , , tl+cl ( , ; 	 = . ) . , , , , , tl+cl ( , ; 	 = . ) . , , , , , tl+cl ( , ; 	 = . ) . , , , , , , tl+cl ( , ; 	 = . ) . , , , , , , tl+cl ( ; accd ≥ . ) . , , , , , tl+cl ( , ; accd ≥ . ) . , , , , , tl+cl ( , ; accd ≥ . ) . , , , , , tl+cl ( , ; accd ≥ . ) . , , , , , tl+cl ( , ; accd ≥ . ) . , , , , , , tl+cl ( , ; accd ≥ . ) . , , , , , , table . : experimental results for top- retrieval with pruned lists. stemming enabled. it is evident that tl+cl with length-limited lists and a minimum acc-score constraint (limited window size) gives a factor of - over the unpruned tl baseline in terms of saved cost, while yielding the same result quality (tl+cl ( , ; accd ≥ . )). using tl as processing strategy with term lists of limited length is a lot worse in effectiveness. pruning with � is not as efficient, and large values for � in fact increase cost: many entries from the pair lists are pruned away, but at the same time the additional content scores available from these entries are not available any more. in combination with length limiting, results are comparable to our best configura- tion, but with slightly longer lists. figures . to . illustrate some of these experimen- tal results. we obtain the best precision values when limiting the list size to , or more elements (for tl+cl(#items; accd ≥ . ) runs). out of the approaches depicted in figures . and . , tl+cl(#items) is the approach with the worst precision values at the highest cost. tl+cl(#items; accd ≥ . ) provides the best precision values at a medium cost, whereas tl+cl(#items; � = . ) only comes up with a slightly better precision than tl+cl(#items), however at the best costs. for mere static index list pruning, precision values are most favorable for choices of � below . . table . demonstrates that, compared to tl+cl with pruned lists, tl+pxl with . indexing and evaluation framework , , , , , , , , , , , , , , , , , , , co st #items tl+cl (#items) tl+cl (#items; tl+cl (#items; acc figure . : tl+cl approaches: cost. . . . . . . . . . , , , , , p @ #items tl+cl (#items) tl+cl (#items; ε= . ) tl+cl (#items; acc ≥ . ) figure . : tl+cl approaches: p@ . , , , , , , , , , , , , , , , , , , , , , , . . . . . co st ( ) figure . : tl+cl(� varied): cost. . . . . . . . . . . p @ ε figure . : tl+cl(� varied): p@ . pruned lists suffer from a strongly reduced retrieval quality. this is due to the fact that documents from pruned cls are often not among the top-documents in tls such that their bm scores are missing in pruned tls: these additional bm scores from the cls have a decisive impact on the retrieval quality as the results of runs using tl+pxl with pruned lists deteriorate. runs with minimum acc-score constraints and the pruning technique by soffer et al. [scc+ ] delivered comparable results. hence, we do not consider tl+pxl settings with pruned lists any more. given that obvious importance of bm scores in pruned cls for the high retrieval quality of tl+cl(#items), we now investigate to which extent the result quality changes if we use only the bm scores from the pruned cls. to this end, we devise another list structure called ctl (combined term index list) that is based on cl but removes the acc-score dimension. for each single term pair (t , t ) there is a list that contains an entry for each document d where this term pair occurs within any text window of size w . this entry has the form (d.docid,scorebm (d,t ),scorebm (d,t )). t and t are lexicographically ordered (i.e., t < t ) such that for any single term pair combination we keep the corresponding combined list just once. ctl(t , t ) denotes the combined term index list for the term pair (t , t ). pruned ctls keep those entries from the corresponding cls where the total contribution from both bm score dimensions is highest. table . compares the retrieval quality for top- retrieval of pruned tl+ctl and tl+cl settings. for a list length of , , p@ for tl+cl is comparable to tl+ctl; . casting proximity scoring models into top-k query processing configuration p@ p@ tl+cl (accd ≥ . ) . . tl+pxl ( , ) . . tl+pxl ( , ) . . tl+pxl ( , ) . . tl+pxl ( , ; 	 = . ) . . tl+pxl ( , ; accd ≥ . ) . . tl+cl ( , ) . . tl+cl ( , ) . . tl+cl ( , ) . . table . : retrieval quality for top- and top- retrieval with pruned lists. configuration p@ tl+ctl( , ) . tl+ctl( , ) . tl+ctl( , ) . tl+cl ( , ) . tl+cl ( , ) . tl+cl ( , ) . table . : retrieval quality for top- retrieval with pruned tl+ctl and tl+cl settings. for longer lists, tl+cl outperforms tl+ctl. due to this advantage, in chapter , we will focus on tl+cl settings when we determine pruning levels for index structures. podnar et al. [prl+ ] use static index list pruning in a peer-to-peer setting with terms and term sets as keys. they distinguish discriminative keys (dks) that occur in at most dfmax documents and non-discriminative keys (ndks) that occur in more than dfmax documents. posting lists of ndks are truncated to their best dfmax entries. a key is called intrinsically discriminative if it is a dk and all smaller subsets of this key are ndks. a key is called highly discriminative key (hdk) if it has at most smax terms, and it occurs in a window of size w, and in addition is an intrinsically discriminative key. full posting lists are stored for hdks. each peer maintains a local index which is built in several iterations, starting with one-term keys to smax-term keys, and adds local hdks and ndks with their posting lists to the global network. the p p network maintains the global posting lists and notifies the responsible peers if an inserted hdk becomes globally non-discriminative. in that case, the peers in charge of the globally non-discriminative keys start expanding the keys with additional terms to produce new hdks of increased key size. the authors use bm scores as a scoring model which is similar to using tl+ctl(dfmax). as especially pruning along the lines of soffer et al. [scc+ ] is done for a specific value of k, it is interesting to see how good results using the index pruned with k = are for larger values of k. tables . and . show the results for top- retrieval with pruned and unpruned lists. even though proximity awareness cannot improve much on result quality, most runs with pruning are at least as effective as the unpruned runs, while saving one or two orders of magnitude in accesses, bytes transferred, and cost. the combination of length-limited lists and limited window size is again best, with a peak factor of more than over the unpruned tl baseline at the same quality (tl+cl ( , ; accd ≥ . )). . indexing and evaluation framework configuration p@ map@ #sa #ra #bytes(sa) #bytes(ra) tl . . , , , , , , , tl+pxl . . , , , , , , , tl+cl . . , , , , , , pxl . . , , , , , tl+cl (accd ≥ . ) . . , , , , tl+cl ( ) . . , , , tl+cl ( , ) . . , , , tl+cl ( , ) . . , , , tl+cl ( , ) . . , , , , tl+cl ( , ) . . , , , , tl+cl ( , ) . . , , , , tl+cl ( ; 	 = . ) . . , , , tl+cl ( , ; 	 = . ) . . , , , tl+cl ( , ; 	 = . ) . . , , , tl+cl ( , ; 	 = . ) . . , , , tl+cl ( ; accd ≥ . ) . . , , , tl+cl ( , ; accd ≥ . ) . . , , , tl+cl ( , ; accd ≥ . ) . . , , , tl+cl ( , ; accd ≥ . ) . . , , , , tl+cl ( , ; accd ≥ . ) . . , , , , tl+cl ( , ; accd ≥ . ) . . , , , , table . : experimental results for top- retrieval with unpruned and pruned lists. configuration cost( ) cost( , ) tl , , , , , , tl+pxl , , , , , , tl+cl , , , , pxl , , , , tl+cl (accd ≥ . ) , , , , tl+cl ( ) , , , , tl+cl ( , ) , , , , tl+cl ( , ) , , , , tl+cl ( , ) , , , , tl+cl ( , ) , , , , tl+cl ( , ) , , , , tl+cl ( ; 	 = . ) , , , , tl+cl ( , ; 	 = . ) , , , , tl+cl ( , ; 	 = . ) , , , , tl+cl ( , ; 	 = . ) , , , , tl+cl ( , ; 	 = . ) , , , , tl+cl ( , ; 	 = . ) , , , , tl+cl ( ; accd ≥ . ) , , , , tl+cl ( , ; accd ≥ . ) , , , , tl+cl ( , ; accd ≥ . ) , , , , tl+cl ( , ; accd ≥ . ) , , , , tl+cl ( , ; accd ≥ . ) , , , , tl+cl ( , ; accd ≥ . ) , , , , table . : costs for top- retrieval with unpruned and pruned lists. . casting proximity scoring models into top-k query processing . . comparison: topx(rr-last mode) on unpruned lists vs. merge join on pruned lists our experiments so far have shown that lists cut at a maximum length of , (when combined with window- or epsilon-based pruning even less) can retain the retrieval quality of unpruned index lists. so we might be able to save the overhead costs induced by the family of threshold algorithms. (d.docid, scorebm (d, ti)) d es ce n d in g sc or e b m merge join top-k results (heap) ( , . ) ( , . ) ( , . ) ( , . ) tl(bike) tl(trails) cl(bike, trails) d es ce n d in g ac c d (t i ,t j ) p ru n e an d r eo rg an iz e in d ex li st s ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) tl(map) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) as ce n d in g d o ci d ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) cl(bike, map) cl(map, trails) (d.docid, scorebm (d, tj)) (d.docid, accd(ti, tj), scorebm (d, ti), scorebm (d, tj)) figure . : example: query={bike, trails, map}, merge join with processing strategy tl+cl using pruned term lists and combined lists. the highly efficient top-k or dynamic pruning algorithms [am , fln ] that are frequently applied for efficient query processing incur a non-negligible processing over- head for maintaining candidate lists and candidate score bounds, for mapping newly read index entries to a possibly existing partially read document using hash joins, and for regularly checking if the algorithm can stop. in our scenario with index lists that are pruned to a rather short maximal length, this processing overhead is not necessary since we will almost always read the complete lists anyway. instead, it is sufficient to evaluate queries in document-at-a-time evaluation. our merge-based processing archi- tecture is depicted in figure . for index lists relating to the example query terms bike, trails, and map, and consists of the following components: . after pruning index lists to a fixed maximal size (and, possibly, using a minimal score cutoff for combined lists), we resort each list in ascending order of docids, and optionally compress it. . indexing and evaluation framework . at query time, the n term and combined lists for the query are combined using an n-way merge join that combines entries for the same document and computes its score. the n-way merge join receives the n document-sorted lists as input and in each join step calculates the score for the next smallest not yet evaluated docid. if that score is higher than the current kth best score, the document is kept in a heap of candidate results (e.g., described on page in [mrs ]), otherwise it is dropped as it cannot make it into the top-k results any more. for every list it keeps track of the position up to which the list has been read so far and iterates to the next item if the document in this list has just been evaluated. if the items of all lists have been read completely, the algorithm terminates. note that we process queries in a disjunctive manner, i.e., docids that do not occur in every list can still qualify for the top-k results. . once all index entries have been read, the content of the heap is returned. instead of maintaining a heap with the currently best k results, an even simpler implementation could keep all results as result candidates and sort them in the end; however, this would increase the memory footprint of the execution as not k, but all encountered documents and their scores need to be stored. independent of the actual algorithm, processing a query with our pruned index lists has a guaranteed maximal abstract execution cost (i.e., the number of index entries read from disk during processing a query), so worst- and best-case runtime are very similar and basically depend only on the number of lists involved in the execution and the cutoff for list lengths. this is a great advantage over using non-pruned term lists with algorithms for dynamic pruning and early stopping, which can read large and uncontrollable fractions of the index lists to compute the results, and may give arbitrarily bad results when stopped earlier [sslm+ ]. our experiments use a server running the microsoft windows enterprise -bit edition on a dual core amd opteron cpu with . ghz and gb ram. both topx and the merge join-based approach have been executed in a sun java . vm that was allowed to use at maximum gb ram, although the real memory requirements are way below gb. index lists have been stored in an oracle g dbms. the baseline of the experiments has been computed with topx with a batch size of , in rr-last mode, i.e., round-robin sequential accesses to the index lists in batches of , items and postponing the random accesses to the end of the query processing. unlike the previous experiments where we used only abstract cost measures, now, we will show that the abstract cost advantages translate into accelerated query processing by measuring real runtimes (in ms). table . shows average precision values and measured runtimes (in ms) for various topx- and merge join-based runs. please note that we encounter minor differences in result quality compared to the experiments carried out in the first part of this chapter. this is due to a modified policy for tie-breaking; in table . documents with lower docids are given preference in case of equally scored documents. the order of result quality and execution speed are still the same, however. . casting proximity scoring models into top-k query processing k= k= k= k= k= run p@k t[ms] p@k t[ms] p@k t[ms] p@k t[ms] p@k t[ms] t o p x tl . , . , . , . , . , tl+pxl . , . , . , . , . , tl+cl . . , . , . , . , m e rg e j o in tl ( , ) . . . . . tl ( , ) . . . . . tl ( , ) . . . . . tl+cl ( , ) . . . . . tl+cl ( , ) . . . . . tl+cl ( , ) . . . . . tl+cl ( , ; 	 = . ) . . . . . tl+cl ( , ; 	 = . ) . . . . . tl+cl ( , ; 	 = . ) . . . . . tl+cl ( , ; accd ≥ . ) . . . . . tl+cl ( , ; accd ≥ . ) . . . . . tl+cl ( , ; accd ≥ . ) . . . . . table . : comparison: topx with unpruned lists vs merge join on pruned lists. tl+cl runs are faster than tl+pxl runs at similar precision values, and tl runs exhibit a decreased precision compared to tl+cl and tl+pxl runs. while run times for topx runs usually grow with increasing k, run times of the merge join runs are independent of k: topx can terminate the query evaluation early dependent on the number of results; for merge joins, the lists are read completely, no matter how k is chosen. for the merge join implementation, run times are linearly proportional to the lengths of the read lists. the merge join implementation of the pruned tl+cl lists can keep up the excellent precision values of the topx runs with unpruned lists. using a light-weight n-ary merge join in combination with pruned index lists sorted by docid, we achieve substantial performance gains. that way, we save much disk space and accelerate query processing by one to two orders of magnitude compared to an evaluation with topx using unpruned lists. . . conclusion of the experiments we have presented novel algorithms and implementation techniques for efficient evalu- ation of top-k queries on text data with proximity-aware scoring. we have shown that our techniques can speed up evaluation by one or two orders of magnitude, trading in runtime for cheap disk space and maintaining the very high result quality (effectiveness) of proximity-aware scoring models. furthermore, we have shown that the abstract cost advantages can be turned into substantial runtime benefits using a light-weight n-ary merge join in combination with pruned document-sorted index lists. the speed up by one or two orders of magnitude compared to an evaluation with topx in rr-last mode using unpruned lists can be confirmed, still providing the same excellent precision values and in addition saving much disk space. . feasibility of scoring models for top-k query processing . feasibility of scoring models for top-k query pro- cessing while some of the techniques presented in chapter demonstrate significant improve- ments in result quality (cf. chapter ), they do not consider the problem how these scores can be efficiently implemented in a search engine. usually, implementations therefore resort to enriching term index lists with position information (e.g., [yds a]) and compute proximity scores after having determined an initial set of documents with ‘good’ text scores (e.g., cf. section . . ). orthogonal to this kind of works, we discuss the feasibility of scoring models for top-k query processing with early termination in the sense of whether they can be used for nra-based query processing (cf. section . ). early termination means that the index lists do not have to be processed completely but reading can stop usually long before all index entries have been read. in particular, we want to explore whether the scoring models are suitable for usage with the index model based on pair lists as presented in section . . . assessing this involves a judgment whether we can build a queryload-independent index that allows to precompute score bounds for result candidates during query processing (cf. section . . ) to enable early termination by means of tight score bounds. . . linear combinations of scoring models we start our discussion with the class of linear combinations of scoring models which combine content and proximity score models. rasolofo and savoy: rasolofo and savoy process queries in two steps: step one computes the k documents with the highest cscore values, step two re-ranks the doc- uments from step one using proximity scores. one way to make rasolofo and savoy’s approach feasible for top-k query processing works in analogy to the approach used for the modification of büttcher’s score (section . . ) and employs term and term pair lists to store for cscore and pscore computations, respectively. rasolofo and savoy use scorebm (d,q)= ∑ ti∈q (k + ) · tf(ti,d) k · [( − b) + b · ld avgdl ] + tf(ti,d) ·max{ , log n − df(ti) df(ti) }·qtf ′(ti), where qtf ′(ti) = qtf (ti) k +qtf (ti) . a term list for term ti could keep an entry of the form (d.docid,scorebm (d,ti)/qtf ′(ti)) for each document d with at least one occurrence of term ti. the list is ordered by descending scorebm (d,ti)/qtf ′(ti) values. dividing scorebm (d,ti) by qtf ′(ti) removes the query dependency from scorebm (d,ti). additionally, the term list can maintain the idf (ti) score in order to compute qw(ti) = idf (ti) qtf (ti) k +qtf (ti) which is required to compute pscore values. a term pair list for a term pair (ti, tj ) can be used for pscore computations if the text window size dist is kept fixed. for each document with at least one occurrence of the term pair in the . casting proximity scoring models into top-k query processing text window, it contains an entry of the form (d.docid,wd(ti, tj,dist)) and is sorted by descending wd(ti, tj,dist) values. during query processing, the bm score-related part in the term list is multiplied by qtf ′(ti), which, for a given query, remains constant for all entries of ti’s term list. the resulting cscore for ti is combined with the pscore part which can be derived from wd(ti, tj,dist) and qw(ti),qw(tj ), respectively. top-k query processing should definitely be applied to step one to allow early ter- mination. step two could use either random accesses to fetch proximity scores just for the documents from step one if the term pair index supports random accesses, or step two could scan the complete term pair lists, skipping documents not retrieved in step one. in the latter case it may be conceivable to order term pair lists by docid (best with a block structure and skip pointers) and perform a merge join of the document-sorted result lists from step one with the term pair lists. optionally, query processing could merge the two steps into one and process term and term pair lists together in a single step. considering cscore and pscore at the same time, this approach would not re-rank just the top-k documents with the highest bm scores. thus, this approach would omit the precomputation of the top-k doc- uments with the highest bm scores. like our top-k variant of büttcher’s score (cf. section . . ), this could help faster termination through tighter earlier score bounds. uematsu et al.: adapting uematsu et al.’s approach for top-k query processing is not easily possible: when it comes to compute score bounds for the pscore part, we need to know the number of sentences where all query terms co-occur, coocc(q,d). building up lists with the number of co-occurrences for all possible query term combinations would solve that problem. as the query load is not known in advance, this will render indexes quickly prohibitively large. as a compromise, we may store d.docid and coocc(q,d) values in lists ordered by descending coocc value just for two-term-queries or selected frequent queries from query logs. for the general case of n-term queries however, the precomputation of pscore values is problematic as indexes are likely to end up being too large. to save on runtime, an approximation comparable to tonellotto et al.’s approach (cf. section . . ) could be used: coocc(q,d) cannot be greater than the minimum of coocc({ti, tj},d) for all {ti, tj} ⊆ q which could be used as an upper bound for coocc(q,d). one could generate term pair lists for (ti, tj ) with (d.docid,coocc({ti, tj},d)) entries ordered by descending coocc({ti, tj},d) values. for each term t, we build a term list (ordered by descending bm score) with (d.docid,scorebm (d,t)) entries in the same way as for büttcher’s approach (with a modified idf score) but with additional sentence- level posting lists: it may be necessary to use position lists to clarify the final coocc(q,d) value since coocc(q,d) is not decomposable into coocc({ti, tj},d) values. monz: monz’ approach cannot be straight-forwardly incorporated into top-k query processing. . feasibility of scoring models for top-k query processing the lnu.ltc score (cscore) could be computed by means of an lnu-score ordered term list for each term t. that term list keeps the idf(t) value and a list of (d.docid, lnu(d,t)) tuples for each document that contains t. the ltc(t) value (which uses only idf and qtf values) can be computed before reading the first entry from the lnu list and factorized into the documents’ lnu.ltc scores. however, normalization by the maximum lnu.ltc score achievable by any document in the collection is an issue: it requires knowledge about the top- result over the complete query and cannot yet be computed after reading only the first entry of each term list. computing minimum matching spans is inherently query-dependent. their compu- tation requires knowledge about the positions of query terms and the subset of query terms that occur in each document. hence, precomputing the pscore which builds upon minimum matching spans is problematic as we do not know the queryload in advance. for two-term queries, proximity scores (product of ssr and mtr features) can be stored in a term pair list. in principle, for n-term queries (n > ) this is doable as well; how- ever space requirements to store lists will quickly render this approach non-practical. anyway, precomputation could be done for selected, very frequent queries from a query log. keeping posting lists with term position information for any (term, document)- pair would be sufficient to compute minimum matching spans but lacks support to precompute score bounds for the pscore part. tao and zhai: tao and zhai combine a baseline content score, which can be either the kl-divergence or the bm score, with a proximity score. the content score part can be easily stored in term lists which allow top-k query processing with dynamic pruning. a term list for term t keeps an entry for each document d with at least one occurrence of term t. term lists that use kl- divergence as cscore, maintain entries of the form (d.docid,scorekl(d,t)/qtf(t)), where scorekl(d,t)/qtf(t) = ln( + tf (t,d) μ·p(t|c) ) + ln μ ld+μ and p(t|c) = ctf (t) lc . term lists that use bm scores as cscore, follow the schema described for rasolofo and savoy’s ap- proach and contain (d.docid,scorebm (d,t)/qtf ′(t)) entries. the lists are ordered by descending scorekl(d,t)/qtf(t) and scorebm (d,t)/qtf ′(t) values, respectively. the qtf and qtf ′ values are constant for a given query-term combination and are incorporated while scoring a document at query processing time. tao and zhai propose a pscore of the general form π(d,q) = log(α + e−δ(d,q)) that employs a selection of span-based and distance aggregation measures to populate δ(d,q). span-based measures require position information and are inherently query-depen- dent so that we cannot precompute scores. to compute the span value, we need knowledge about the maximum and minimum position of all query term occurrences in a document. building up a term list for each term with minimum and maximum position of that term’s occurrences in a document is not good enough. as long as there is just one missing dimension, the maximum and minimum position can still change (unless they are already and ld, respectively); score bounds cannot be precomputed that way. term pair lists can resolve this issue just for two-term queries and use the difference of . casting proximity scoring models into top-k query processing maximum and minimum position. to compute the mincover value, we face a similar problem, since the length of the shortest document part that covers each query term at least once has to be found. it seems that mincover cannot be decomposed into term pair lists to perform early candidate pruning as position information is required for all query terms. the normalized versions of span and mincover share the same problems. the situation is better for distance aggregation measures which can be represented by a term pair list for each term pair {ta, tb}. for each document di with at least one occurrence of both ti and tj , the term pair list for {ta, tb} contains an entry of the form (di.docid,mindist(ta, tb,di)), where mindist(ta, tb,di) = min{|a − b| : pa(di) = ta ∧pb(di) = tb}. term pair lists may be sorted either by descending or ascending score since we will see in the following descriptions, that we need both highj and lowj scores to compute score bounds which is different from typical scenarios involving the nra where lists are ordered by descending score. therefore, it may be good to read term pair lists from both ends of the lists in order to decrease their high and increase their low values at the same time. if the list is sorted by descending score, highj is the score at the current scan position and lowj the lowest score available in a list, respectively. if the list is sorted by ascending score, highj is the highest score available in a list and lowj the score at the current scan position in a list, respectively. we reuse the notation from section . to compute a document di’s bestscore and worstscore values (c and p indexes denote the cscore and pscore component, respec- tively): bestscore(di) = · bestscorec(di) + · bestscorep(di) and worstscore(di) = · worstscorec(di) + · worstscorep(di). for a given query, lcscore is the set of term lists, lpscore is the set of term pair lists, both with remaining unread entries. sc(di) ⊆ lcscore and sp(di) ⊆ lpscore denote the set of term and term pair lists where di has been seen, whereas s̄c(di) = lcscore −sc(di) and s̄p(di) = lpscore − sp(di) represent the set of not completely processed term and term pair lists where di has not yet been encountered. the minimum pair distance (mindist) is the smallest distance over all query term pairs in document di with mindist(di,q) = minta,tb∈tdi (pdi (q)),ta �=tb{mindist(ta, tb,di)}. hence, π(di,q) = log(α + e−δ(di,q)) = log(α + e −minta,tb∈tdi (pdi (q)),ta �=tb {mindist(ta,tb,di)}). the corresponding worstscore and bestscore for the proximity part π(di,q) with mindist can be calculated as follows: worstscorep(di) = log(α + e −min(maxlj ∈s̄p(di)(highj ),minlj ∈sp(di)(mindist(ta,tb,di)))) and bestscorep(di) = log(α + e −min(minlj ∈s̄p(di)(lowj ),minlj ∈sp(di)(mindist(ta,tb,di)))). as worstscorep(di) represents the minimally possible proximity score for di, the ex- ponent of the exponential function must become as negative as possible. consequently, we use the maximum among all highj for lj ∈ s̄p(di) as higher values render the . feasibility of scoring models for top-k query processing argument of −min larger and the exponent more negative. as bestscorep(di) repre- sents the maximally possible proximity score for di, the exponent of the exponential function must become as little negative as possible. hence, we use the minimum of all lowj values as lower values render the argument of −min smaller and the exponent less negative. minlj∈sp(di)(mindist(ta, tb,di)) represents mindist in the dimensions where di has already been encountered and is used both for worstscore and bestscore computations. the exponent starts with −min as −δ(di,q) = −mindist(di,q). the average pair distance (avgdist) is the average distance over all query term pairs in document di with avgdist(di,q) = n(n− ) ∑ ta,tb∈tdi (pdi (q)),ta �=tb mindist(ta, tb,di) and n being the number of unique matched query terms in di. hence, π(di,q) = log(α + e −δ(di,q)) = log(α + e n(n− ) p ta,tb∈tdi (pdi (q)),ta �=tb mindist(ta,tb,di) ). n(n− ) corresponds to (n ) which is the reciprocal of the number of term pairs and used to build the average distance over all query term pairs. the worstscore and bestscore for the proximity part π(di,q) with avgdist can be calculated as follows: worstscorep(di) = log(α+e −maxa⊆s̄p(di)[f (a,sp(di))( p lj ∈a highj + p lj ∈sp(di) mindist(ta,tb,di))]) and bestscorep(di) = log(α+e −mina⊆s̄p(di)[f (a,sp(di))( p lj ∈a lowj + p lj ∈s(di) mindist(ta,tb,di))]), where f(a,sp(di)) = (|a|+|sp(di)|)(|a|+|sp(di)|− ) and (|a| + |sp(di)|) represents the true value for n in di. as worstscorep(di) represents the minimally possible proximity score for di, we have to select the subset a of term pair lists where di has not been encountered yet (i.e., s̄p(di)) such that the exponent of the exponential function becomes as negative as possible. we use highj for lj ∈ a as higher values render the argument of −max larger and the exponent more negative. in contrast, bestscorep(di) represents the max- imally possible proximity score for di: we have to select the subset a of term pair lists where di has not been encountered yet (i.e., s̄p(di)) such that the exponent of the exponential function is as little negative as possible. we use lowj for lj ∈ a as lower values render the argument of −min smaller and the exponent less negative. both for worstscorep(di) and bestscorep(di), ∑ lj∈sp(di) mindist(ta, tb,di) represents the contribution of proximity score dimensions, where di has already been seen. the maximum pair distance (maxdist) is the maximum distance over all query term pairs in document di with maxdist(di,q) = maxta,tb∈tdi (pdi (q)),ta �=tb{mindist(ta, tb,di)}. hence, π(di,q) = log(α + e−δ(di,q)) = log(α + e maxta,tb∈tdi (pdi (q)),ta �=tb {mindist(ta,tb,di)}). the worstscore and bestscore for the proximity part π(di,q) using maxdist can be calculated as follows: worstscorep(di) = log(α + e −max(maxlj ∈s̄p(di)(highj ),maxlj ∈sp(di)(mindist(ta,tb,di)))) and bestscorep(di) = log(α + e −max(minlj ∈s̄p(di)(lowj ),maxlj ∈sp(di)(mindist(ta,tb,di)))). . casting proximity scoring models into top-k query processing while sp(di) = ∅, worstscorep(di) = log(α + e−ldi ) for all distance aggregation measures. this takes account of the case that there is only one query term match in a document, for which mindist, maxdist and avgdist are all defined as the length of the document ldi . to safely stop, the following inequality must be fulfilled for not yet seen (virtual) documents: · ∑ lj∈lcscore qtf ′(tj )highj + · log(α + e−minlj ∈lpscore (lowj )) < min-k. the left side of the inequation represents the bestscore for not yet seen documents, the right side the smallest worstscore of the temporary top-k results. this holds for all presented distance aggregation measures. for avgdist and maxdist, bestscorep becomes the largest if the virtual document is contained only in one term pair list, the one with the lowest lowj score. for maxdist, we can safely remove the maximum from the exponent then (as there is only one dimension). for mindist, bestscorep becomes the largest if the virtual document is contained in the term pair list with the lowest lowj score. the only difference to avgdist and maxdist is that it may also occur in other term pair lists; however this would not affect the bestscorep bound of the virtual document. . . integrated score models this subsection discusses the feasibility of selected integrated score models for top-k query processing. de kretser and moffat: de kretser and moffat describe two algorithms to compute a ranking of documents. as the first algorithm follows a greedy approach, we focus on the second. the second algorithm uses the maximum score among the scores at posi- tions of query term occurrences in d as document score. the algorithm could be imple- mented by means of lists for ordered term pairs (ti, tj ), pl(ti, tj ). they consist of en- tries of the form (d.docid,x, ∑ l∈pd(tj ) c ′ tj (x,l)) ordered by descending ∑ l∈pd(tj ) c ′ tj (x,l) values and x being a position with a term occurrence of term ti, i.e., x ∈ pd(ti). c′tj (x,l) equals ctj (x,l)/qtf(tj ) as qtf(tj ) values from the height component in ctj (x,l) are only known at query processing time. evaluating a query q processes all pl(ti, tj ) indexes, where ti, tj ∈ q. in this setup, bestscore(d,q) equals maxx∈pd(q)bestscore(d,q,x), where bestscore(d,q,x) is the highest score achievable at a query term position x. note that this approach may not be usable in practice due to blown-up indexes: every document generates not only one entry per term pair (ti, tj ), but one entry per occurrence of ti in d. in addition, as the term pairs are ordered, we need two term pair lists per term pair. song et al.: song et al. partition documents into groups of subsequent query term occurrences, so-called espans. espans (the number of query terms in them and their density, respectively) do not seem to be representable by term or term pair lists as . feasibility of scoring models for top-k query processing they highly depend on the position of all query term occurrences in a document: the solution to the problem of determining bestscore bounds for documents could follow an approach similar to the approach we sketched in section . . for büttcher et al.’s score. again, everything boils down to a combinatorial problem where we construct conceived documents by means of tf(t,d) scores that maximize the document score which is dependent on spans. compared to the solution for büttcher et al.’s score, this problem seems to be even more difficult as the document has to be additionally split into espans. mishne and de rijke: mishne and de rijke’s scoring model follows an ”everything- is-a-phrase” approach which means that every term-level n-gram of an ordered query forms a phrase. proximity terms relax phrases to term set occurrences in a text win- dow. all these approaches share the problem that queries are not length-limited and consequently phrases and proximity terms are not length-limited either. while the idf values of phrases could be estimated by aggregating idf values stored as meta- information per term list, we do not see a way to cast the scoring model into term or term pair lists without keeping and reading posting lists with position information of individual terms which would prevent precomputation of score bounds. position lists are required to assess whether phrase terms occur adjacently to each other or in a text window, respectively, and not only to clarify the final score value. like for uematsu et al., an approximation comparable to tonellotto et al. (cf. section . . ) could be used to compute an upper bound for tf values of a phrase p: tf(p,d) cannot be greater than the minimum of tf(t,d) for all single terms t in p. the accuracy of the upper bound could be improved by usage of term pair lists instead. this would alleviate the problem, but not solve it. . . language models with proximity components this subsection discusses the feasibility of two language models with proximity com- ponents for top-k query processing. lv and zhai: lv and zhai’s approach can be adapted to top-k query processing with early termination. ranking documents comes in three variants which all aggregate scores at document positions. the score at position i in d is defined as s(d,q,i) = − ∑ t∈v p(t|q) · log p(t|q) p(t|d,i) = − ∑ t∈v p(t|q) · log p(t|q) + ∑ t∈v p(t|q) · log p(t|d,i) = − ∑ t∈v qtf(t) |q| · log qtf(t) |q| + ∑ t∈v p(t|q) · log p(t|d,i) ∝ ∑ t∈v p(t|q) · log p(t|d,i) = ∑ t∈v qtf(t) |q| · log p(t|d,i) = ∑ t∈q qtf(t) |q| · log p(t|d,i). . casting proximity scoring models into top-k query processing as − ∑ t∈v qtf (t) |q| · log qtf (t) |q| is constant for all documents given a query q, it can be omitted without influencing the document ranking. we further can restrict the sum- mation to query terms, since non-query terms have no influence on s(d,q,i) because their qtf value is always . the positional language model (in the non-smoothed version) at position i in docu- ment d is defined as p(t|d,i) = c ′(t,i)p t′∈v c ′(t,i), where c ′(t, i) = ∑ld j= c(t,j) · k(i,j). hence, s(d,q,i) ∝ ∑ t∈q qtf (t) |q| · log c′(t,i)p t′∈v c ′(t,i). given a fixed kernel and spread, it is possible to store for every term t a term list with entries of the form (d.docid,d.i, log c ′(t,i)p t′∈v c ′(t′,i) ), where d.i is the scored position in document d, ordered by descending log c ′(t,i)p t′∈v c ′(t′,i) values. our solution for de kretser and moffat’s approach described in section . . also assumes a fixed kernel and spread, but uses ordered term pair lists instead of term lists. the jelinek-mercer smoothed variant of the positional language model is defined as pjm (t|d,i) = ( − λ)p(t|d,i) + λp(t|c) = ( − λ) c ′(t, i)∑ t′∈v c ′(t′, i) + λ ctf(t) lc hence, s(d,q,i) ∝ ∑ t∈q qtf (t) |q| · log[( − λ) c′(t,i)p t′∈v c ′(t′,i) + λ ctf (t) lc ]. given a fixed kernel, spread, and weight λ, it is possible to store for every term t a term list with entries of the form (d.docid,d.i, log[( − λ) c ′(t,i)p t′∈v c ′(t′,i) + λ ctf (t) lc ]) which is ordered by descending log[( − λ) c ′(t,i)p t′∈v c ′(t′,i) + λ ctf (t) lc ] values with d.i being the scored position in document d. qtf (t)|q| is only known at query processing time and is factorized into the score by simple multiplication by the indexed scores. the positional language model with dirichlet prior smoothing is defined as pdp (t|d,i) = c′(t, i) + μp(t|c)∑ t′∈v c ′(t′, i) + μ′ = c′(t, i) + μctf (t) lc∑ t′∈v c ′(t′, i) + μ′ = c′(t,i)·lc+μ·ctf (t) lc∑ t′∈v c ′(t′, i) + μ′ = c′(t, i) · lc + μ · ctf(t) lc · ( ∑ t′∈v c ′(t′, i) + μ′) . hence, s(d,q,i) ∝ ∑ t∈q qtf (t) |q| · log c′(t,i)·lc+μ·ctf (t) lc·( p t′∈v c ′(t′,i)+μ′). given a fixed kernel and spread, we propose to store term lists for every term t with entries of the form (d.docid,d.i, log c ′(t,i)·lc+μ·ctf (t) lc·( p t′∈v c ′(t′,i)+μ′) ), where d.i is the scored position in document d, ordered by descending log c ′(t,i)·lc+μ·ctf (t) lc·( p t′∈v c ′(t′,i)+μ′) values. in the following, we elaborate on bestscore and worstscore bounds for documents when dirichlet prior smoothing is used which provides the best results in the studies of lv and zhai. we detail score bounds for each of the three ranking options suggested by . feasibility of scoring models for top-k query processing lv and zhai. while s(d,i) denotes the set of term lists where an entry for document d at position i has been encountered, s̄(d,i) represents the set of term lists which still contain unread entries and where d has not been seen yet. we define f(d,i,t) = log c ′(t,i)·lc+μ·ctf (t) lc·( p t′∈v c ′(t′,i)+μ′). if we score all documents by the best position in that document, the score bounds are worstscore(d) = maxi∈{ ,...,ld}{ , ∑ lj∈s(d,i) qtf(tj ) |q| f(d,i,tj )} and bestscore(d) = maxi∈{ ,...,ld}{ ∑ lj∈s(d,i) qtf(tj ) |q| f(d,i,tj ) + ∑ lj∈s̄(d,i) qtf(tj ) |q| highj}. if we score all documents by the average of the best k positions in that document, we get worstscore(d) = k · ∑ i ∈ top-k of s(d, q, ·)worstscores max{ , ∑ lj∈s(d,i) qtf(tj ) |q| f(d,i,tj )} and bestscore(d) = k · ∑ i ∈ top-k of s(d, q, ·)bestscores ∑ lj∈s(d,i) qtf(tj ) |q| f(d,i,tj ) + ∑ lj∈s̄(d,i) qtf(tj ) |q| · highj. if we score all documents using a weighted score based on various spreads βσ with σ ∈ r, i.e., s(d,q) = ∑ σ∈r βσ · maxi∈{ ,...,ld}{sσ(d,q,i)}, we obtain worstscore(d) = maxi∈{ ,...,ld}{ , ∑ σ∈r βσ · ∑ lj∈s(d,i) qtf(tj ) |q| f(d,i,tj )} and bestscore(d) = maxi∈{ ,...,ld}{ ∑ σ∈r βσ · ( ∑ lj∈s(d,i) qtf(tj ) |q| f(d,i,tj )+ ∑ lj∈s̄(d,i) qtf(tj ) |q| highj )}. to safely stop, the following inequation must be fulfilled for not yet seen (virtual) documents and holds for every score variant: ∑ lj∈l qtf(tj ) |q| highj < min-k, where l represents the set of lists with remaining unread entries. the left part of the inequation represents the bestscore of not yet seen documents. as a virtual document has not been encountered in any dimension, for every bestscore computation, we can ignore the part which sums up contributions over lj ∈ s(d,i). instead we expect to see virtual documents in all lists with remaining unread entries. when scoring documents by the best position, the virtual document d has the following bestscore: bestscore(d) = maxi∈{ ,...,ld}{ ∑ lj∈l qtf (tj ) |q| highj}. if we assume that all highj point to the same (d,i) pair, we obtain the highest possible bestscore for d which corresponds to the left side of the inequation. . casting proximity scoring models into top-k query processing when scoring documents by the average of the best k positions in that document, the virtual document d has the following bestscore: bestscore(d) = k · ∑ i ∈ top-k of bestscores at positions in d ∑ lj∈s̄(d,i) qtf(tj ) |q| · highj. if we assume that all highj point to the same (d,i) pair (with (d,i) as top- bestscore) and the remaining k- bestscore positions in d have the same bestscore as (d,i), we ob- tain the highest possible bestscore for d. hence, bestscore(d) = k ·k· ∑ lj∈l qtf (tj ) |q| · highj which corresponds to the left side of the inequation. when scoring documents using a weighted score based on various spreads βσ with σ ∈ r, we obtain: bestscore(d) = maxi∈{ ,...,ld}{ ∑ σ∈r βσ · ( ∑ lj∈l qtf(tj ) |q| highj )}. with ∑ σ∈r βσ= and assuming again that all highj point to the same (d,i) entry, we obtain the left side of the inequation. zhao and yun: we can cast zhao and yun’s retrieval model into index lists to allow top-k query processing with early termination. to this end, we first transform the score into indexable components: score(d,q) = ∑ tf (ti, d) > , ti in q p(ti|θ̂q) log ps(ti|d,u) αd · p(ti|c) + log αd = ∑ tf (ti, d) > , ti in q qtf(ti) |q| log( tf (ti,d)+λp roxb (ti)+μ· ctf (ti)lc ld+ p|v | i= λp roxb (ti)+μ μ ld+ p|v | i= λp roxb (ti)+μ · ctf (ti) lc )+log αd = ∑ tf (ti, d) > , ti in q qtf(ti) |q| log( lc·(tf(ti,d) +λproxb(ti)+μ· ctf (ti)lc ) μ · ctf(ti) ) + log μ ld + ∑|v | i= λproxb(ti) + μ ≈ ∑ tf (ti, d) > , ti in q qtf(ti) |q| log( tf(ti,d) · lc μ · ctf(ti) + λproxb(ti) · lc μ · ctf(ti) + ) + log μ ld + ∑ t∈q λproxb(t) + μ . log μ ld+ p|v | i= λp roxb (ti)+μ ≈ log μ ld+ p t∈q λp roxb (t)+μ as proxb(t) becomes very small for non-query terms in v. . feasibility of scoring models for top-k query processing for each term ti, we maintain a term list which keeps entries of the form (d.docid, tf (ti,d)lc μ·ctf (ti) ), ordered by descending tf (ti,d)lc μ·ctf (ti) values. for each term pair {ti, tj}, like for tao and zhai’s scoring models, we keep a list with (d.docid,mindist(ti, tj,d)) entries. analogously to the approach we proposed for tao and zhai’s retrieval model, term pair lists may be sorted either by descending or ascending score since we will see in the following descriptions, that we need both highj and lowj scores to compute score bounds which is different from typical scenarios involving the nra where lists are ordered by descending score. if the list is sorted by descending score, highj is the score at the current scan position and lowj the lowest score available in a list, respectively. if the list is sorted by ascending score, highj is the highest score available in a list and lowj the score at the current scan position in a list, respectively. for a given query, lcscore is the set of term lists. lpscore(ti) stands for the set of not completely read term pair lists for ti and a different query term. rp(d,ti) denotes the set of completely read term pair lists where d was not encountered, one partner term is ti and the other one a different query term. while rp(ti) denotes the set of completely read term pair lists, r̄p(ti) denotes the set of not yet completely read term pair lists, where one partner term is ti and the other one a different query term. sp(d,ti) represents the set of term pair lists for ti and a different query term, where d has been encountered. s̄p(d,ti) is the set of not completely read term pair lists for ti and a different query term, where d has not yet been encountered. if we use minimum distance as proximate centrality, i.e., proxm indist, we obtain the following score bounds for the proximity component in the non-αd part: worstscorep(ti,d) = λx −min(ld,minlij ∈sp(d,ti)(mindist(ti,tj ,d))) · lc μ · ctf(ti) and bestscorep(ti,d) = λx −min(ld,minlij ∈sp(d,ti)(mindist(ti,tj ,d)),minlij ∈s̄p(d,ti)(lowij )) · lc μ · ctf(ti) . worstscorep(ti,d) gets smallest if the exponent of x is as negative as possible. this is the case if d is not contained in any list lij ∈ s̄p(d,ti) which would result in dis(ti, tj,d) = ld. for those lists where d has been encountered we have to set mindist(ti, tj,d) as distance. bestscorep(ti,d) gets largest if the exponent of x is as little negative as possible. to this end, we expect to see d in lij from s̄p(d,ti) having the smallest lowij value. for worstscorep,αd (q) and bestscorep,αd (q) the actions to take to minimize/maximize the score, respectively, are switched since x does not stand in the numerator, but in the denominator. consequently, for αd, we obtain the following score bounds: worstscorep,αd (q) = μ ld+ ∑ ti∈q λx −min(ld,minlij ∈sp(d,ti)(mindist(ti,tj ,d)),minlij ∈s̄p(d,ti)(lowij ))+μ and bestscorep,αd (q) = μ ld + ∑ ti∈q λx −min(ld,minlij ∈sp(d,ti)(mindist(ti,tj ,d)))+μ . . casting proximity scoring models into top-k query processing to safely stop, the following inequation must be fulfilled for not yet seen (virtual) documents: ∑ li∈lcscore qtf(ti) |q| ·log(highi + λx −min(ld,minlij ∈lpscore(ti)(lowij ))·lc μ · ctf(ti) + ) + log μ ld + ∑ ti∈q λx −ld (ti)+μ < min-k. highi is the highest score in the term list of ti which becomes if the list has been read completely. as the left side of the inequality is to be maximized, we expect for the non-αd−part that we see d with the lowest possible lowij score. if all term pair lists have been read, we have to use ld. for the αd−part, we expect d not to be seen in any of the remaining term pair lists and hence employ ld. if we use average distance as proximate centrality, i.e., proxavgdist, we get the following score bounds for the proximity component in the non-αd part: worstscorep(ti,d) = λx −maxa⊆s̄p(d,ti)[f (sp(d,ti),a)(g(sp(d,ti))+ p lij ∈a highij + p lij ∈rp(d,ti) ld)] · lc μ · ctf(ti) and bestscorep(ti,d) = λx −mina⊆s̄p(d,ti)[f (sp(d,ti),a)(g(sp(d,ti))+ p lij ∈a lowij + p lij ∈rp(d,ti) ld)]·lc μ · ctf(ti) , where f(sp(d,ti),a) = |sp(d,ti)|+|a|− and g(sp(d,ti)) = ∑ lij∈sp(d,ti) mindist(ti, tj,d). for the computation of worstscorep(ti,d), we again aim at making the exponent of x as negative as possible. to this end, we negatively maximize it over all subsets a of s̄p(d,ti); we expect d to be encountered in all lists in a with the highest possible value highij. hence, f(sp(d,ti),a) = n− where n = |sp(d,ti)| + |a|. for bestscorep(ti,d), we make the exponent of x as little negative as possible. therefore, we expect d to be encountered in all lists in a with the lowest possible value lowij. for αd, we obtain the following score bounds: worstscorep,αd (q) = μ ld+ ∑ ti∈q λx −mina⊆s̄p(d,ti)[f (sp(d,ti),a)(g(sp(d,ti))+ p lij ∈a lowij + p lij ∈rp(d,ti) ld)]+μ and bestscorep,αd (q) = μ ld+ ∑ ti∈q λx −maxa⊆s̄p(d,ti)[f (sp(d,ti),a)(g(sp(d,ti))+ p lij ∈a highij + p lij ∈rp(d,ti) ld)]+μ . worstscorep,αd (q) and bestscorep,αd (q) are handled analogously to the other proxi- mate centrality variants. . feasibility of scoring models for top-k query processing to safely stop, the following inequation must hold for not yet seen (virtual) docu- ments: ∑ li∈lcscore qtf(ti) |q| ·log(highi + λx −mina⊆r̄p(ti)[ |a|− ( p lij ∈a lowij + p lij ∈rp(ti) (mind∈c)ld)]·lc μ · ctf(ti) + ) + log μ ld + ∑ ti∈q λx −maxa⊆r̄p(ti)[ |a|− ·( p lij ∈a highij + p lij ∈rp(ti) (maxd∈cld))]+μ < min-k. highi is the highest score in the term list of ti which becomes if the list has been read completely. for the non-αd−part, we aim at rendering the exponent of x as little negative as possible: to this end, we use lowij for all lists in a and the minimum document length in the collection for completely read lists. for the αd−part, we aim at rendering the exponent as negative as possible. therefore, we use highij for lists in a and the maximum length of any document in the collection for completely read lists. if we use summed distance as proximate centrality, i.e., proxsumdist, we can work with the following score bounds for the proximity component in the non-αd part: worstscorep(ti,d) = λx −(g(sp(d,ti))+ p lij ∈rp(d,ti) ld+ p lij ∈s̄p(d,ti) ld) · lc μ · ctf(ti) and bestscorep(ti,d) = λx −(g(sp(d,ti))+ p lij ∈rp(d,ti) ld+ p lij ∈s̄p(d,ti) lowij ) · lc μ · ctf(ti) , where g(sp(d,ti)) = ∑ lij∈sp(d,ti) mindist(ti, tj,d). worstscorep(ti,d) gets smallest if the exponent of x is as negative as possible. to accomplish that we set ld for all lists where d has not been encountered (i.e., lists in rp(d,ti) or s̄p(d,ti)) which means that d will not be seen in those lists any more. bestscorep(ti,d) gets largest if the exponent of x is as little negative as possible. for each list lij in s̄p(d,ti) we set lowij to fulfill this goal. worstscorep,αd (q) and bestscorep,αd (q) are handled analogously to the other proxi- mate centrality variants. for αd, we obtain the following score bounds: worstscorep,αd (q) = μ ld+ ∑ ti∈q λx −(g(sp(d,ti))+ p lij ∈rp(d,ti) ld+ p lij ∈s̄p(d,ti) lowij ) + μ and bestscorep,αd (q) = μ ld+ ∑ ti∈q λx −(g(sp(d,ti))+ p lij ∈rp(d,ti) ld+ p lij ∈s̄p(d,ti) ld) + μ . to safely stop, the following inequation must be fulfilled for not yet seen (virtual) documents: ∑ li∈lcscore qtf(ti) |q| ·log(highi + λx −(plij ∈lpscore(ti) (lowij )+ p lij ∈rp(ti) (mind∈cld)) · lc μ · ctf(ti) + ) + log μ ld + ∑ ti∈q λx −(plij ∈rp(ti) (maxd∈cld)+ p lij ∈lpscore(ti) (maxd∈cld))+μ < min-k. . casting proximity scoring models into top-k query processing highi is the highest score in the term list of ti which becomes if the list has been read completely. for the non-αd−part, (to render the exponent of x as little negative as possible) we expect for the not yet completely read term pair lists that the virtual document is encountered with the lowest possible value lowij . for the completely read term pair lists in rp(ti) we use the minimum length of any document in the collection. for the αd−part, we aim at rendering the exponent as negative as possible. therefore, we use the maximum length of any document in the collection. . . learning to rank in this subsection, we discuss the feasibility of some learning to rank approaches for early termination in an nra setting. svore et al.: svore et al.’s approach is based on song et al.’s work which incorporates assessing the goodness of espans. if the learned scoring model involves this kind of features, it shares the same problems (cf. section . . ). this also applies to proximity match features which require knowledge about spans in each document. non-span related features, however, can be cast into term lists (λbm features) or term pair lists (λbm - features) and make early termination possible. metzler and croft: in principle, metzler and croft’s retrieval model can be cast into score-ordered index lists to make early termination possible. for each of the three kinds of potential functions, we need a separate list with docids and their feature values ordered by descending feature value: • for single terms qi, a term list for qi could store entries of the form (d.docid, log[( − αd) tf(qi,d) ld + αd ctf(qi) lc ]). • for ordered potential functions representing phrases ”qi, . . . ,qi+k”, we could store entries of the form (d.docid, log[( − αd) tf# (qi,...,qi+k),d ld + αd ctf# (qi,...,qi+k) lc ]). • for unordered potential functions representing ordered or unordered occurrences of query term sets {qi, . . . ,qj}, we could store entries of the form (d.docid, log[( − αd) tf#uwn (qi,...,qj ),d ld + αd ctf#uwn (qi,...,qj ),d lc ]). the sum of the weighted scores from the three potential functions can be used to compute score bounds during query processing. as usual, storing entries for single terms is not an issue. the problem that prevents this approach from being practical for top-k query processing, without restrictions on the queries, is the huge amount of possible phrases and sets of query terms that may occur within a text window. . feasibility of scoring models for top-k query processing cummins and o’ riordan: cummins and o’ riordan use genetic programming to learn a scoring model. the baseline scores can be cast into term lists. scorees is materialized analo- gously to scorebm as described for rasolofo and savoy’s approach. a term list for term ti could keep an entry of the form (d.docid,scorees(d,ti)/qtf(ti)) for each docu- ment d with at least one occurrence of term ti where the list is ordered by descending scorees(d,ti)/qtf(ti) values. the learned retrieval model is feasible for top-k query processing if only measures are used which can be cast into term pair lists. these measures include measures to listed in section . . . the document length (measure ) is known at indexing time so that it can also be incorporated into precomputed scores. the number of unique query terms in a document (measure ) can be captured by both reading term and term pair lists. for learned scoring models where we can factor out the qt-part of the original score, we could follow the approach we have proposed for making the avgdist measure by tao and zhai feasible for top-k querying. while scanning the lists, a document’s qt value ranges from the number of distinct query terms seen so far for that document to the number of query terms: while the bestscore would maximize the score value, the worstscore minimizes the score value over all possible qt values. having completely read a scorees or scorebm based term list can shrink the range of qt. measures and (i.e., fullcover and mincover) correspond to measures used by tao and zhai (fullcover corresponds to span in tao and zhai’s paper) and are inherently query-dependent and cannot be easily decomposed into term pair lists. more details can be found in the paragraph about tao and zhai’s approach in section . . . . . summary we have shown that, for a surprisingly high fraction of proximity score-enhanced re- trieval models, it is possible to cast them into precomputed term and term pair lists: rasolofo and savoy’s scoring model can be cast into precomputed term and term pair lists similar to our modification of büttcher’s approach. tao and zhai’s approach is feasible for index precomputation when one of the three distance aggregation measures is used. however, different from a conventional nra strategy that orders lists by decreasing impact, here, term pair lists may be ordered by ascending impact since both low and high values of lists are needed to determine worstscores and bestscores of documents. thus, it may be worthwhile thinking about reading from both ends of the lists for faster termination. de kretser and moffat’s second algorithm can be cast into term pair lists with document-position related scores although the index may take up too much space to be practical; the maximum score over all positions becomes the document score. lv and zhai’s approach can be cast into term lists that keep scores for (document, position) pairs. zhao and yun’s approach keeps three kinds of index lists: term lists for the content score part, term pair lists for the proximity component and one query-independent document-constant list. cummins and o’riordan’s approach can be used for top-k query processing if we restrict learned scores to consist only of . casting proximity scoring models into top-k query processing components that can be cast into term pair lists. some scoring models cannot be cast into index lists due to space reasons: tao and zhai’s model with span-based measures (span and mincover) requires position information at query processing time. precomputing index lists for monz’ approach is problematic since minimum spans are inherently query-load dependent. the approaches by song et al. and svore et al. rely on espans which can be determined only if we know, for any query term occurrence in a document, which query term follows next in the document and at which position. the approaches suggested by mishne and de rijke and by metzler and croft rely on tf values of phrasal occurrences and term set occurrences within text windows, respectively. precomputing and storing them for arbitrary n-grams exceeds reasonable space requirements. chapter index tuning for high-performance query processing the first part of this chapter introduces a joint framework for trading off index size and result quality. it provides optimization techniques for tuning precomputed indexes towards either maximal result quality or maximal query processing performance under controlled result quality, given an upper bound for the index size. the framework allows to selectively materialize lists for pairs based on a query log to further reduce the index size. extensive experiments with two large text collections demonstrate runtime improvements of more than one order of magnitude over existing text-based processing techniques with reasonable index sizes. this part is based on our article published in [bs ] and enriched with results from our participation in the inex ad hoc and efficiency tracks [bs ] and the trec web track [bs ]. the second part of this chapter introduces a new index structure to improve cold cache performance by reducing the number of fetched lists traded in for more read bytes. this part is based on our work presented in [bs ]. . introduction . . motivation in chapter we have presented an approach to integrate proximity scores as an integral part of query processing. this showed that proximity scores can improve not only result quality, but also efficiency, by means of index pruning. however, the index parameters for pruning were chosen in an ad hoc manner, lacking systematic optimization. we now extend results from chapter towards a configurable indexing framework which can be tuned either for maximal and dependable query performance under result quality control or for maximal result quality given an index size budget. existing methods for the integration of proximity scores into efficient query processing algorithms for quickly . index tuning for high-performance query processing computing the best k results (e.g., [ccks , prl+ ]) make use of precomputed lists of documents where tuples of terms, usually pairs, occur together, usually incurring a huge index size compared to term-only indexes, or focusing on conjunctive queries only. there are existing techniques for lossy index compression that materialize only a subset of all term pairs, e.g., those term pairs occurring in queries of a query log. in contrast and orthogonally to these techniques, this chapter aims at limiting the size of each term pair list by limiting the maximal list length and imposing a minimal proximity score per tuple in a term pair list. at the same time, the choice of term pair index lists to be materialized can be based on frequent queries in a query log. our method can be tuned towards either guaranteeing maximal result quality or maximal query performance at controlled result quality within a given index size constraint. for both optimization goals, the result of the method is a set of pruned index lists of a fixed maximal length, which means that the worst-case cost for evaluating a query with this index can be tightly bound as well. in our experiments with the gov collection (reported in section . ), we show that entries per list can be enough to give the same result quality as a standard score taking only term frequencies into account. we have measured an average warm cache retrieval time of less than ms at a cache size of just mb for a standard query load of , queries, an average cold cache retrieval time of ms and a hot cache retrieval time of less than ms. in this configuration, the size of the compressed index is gb, only slightly larger than the compressed collection. similar query processing costs can be achieved for much larger collections, such as the recent clueweb collection. . . contributions this chapter makes the following important contributions: • it introduces a tunable indexing framework for terms and term pairs for opti- mizing index parameters towards either maximal result quality or maximal query processing performance under result quality control, given a maximal index size. • it allows a selective materialization of term pair index lists based on information from a query log. • the resulting indexes provide dependable query execution times while providing a result quality comparable to or even better than unpruned term indexes. • it experimentally demonstrates that the resulting index configurations allow query processing that yields almost one order of magnitude performance gain compared to a state-of-the-art top-k algorithm while returning results of at least comparable quality. . . outline of the chapter the remainder of this chapter is structured as follows. section . elaborates on the in- dex organization and the employed index compression techniques. section . presents . indexes the index tuning framework within the mapreduce paradigm and formulates tuning as an optimization problem that considers both index size and retrieval quality. section . shows how the size of the index can be reduced further using a query log. section . experimentally evaluates our index tuning techniques from section . with two large text collections from trec, namely gov and clueweb (cf. section . . ), for dif- ferent result size cardinalities. it can be tuned either towards effectiveness or efficiency, given a size limit for the pruned indexes, both in the presence and absence of relevance assessments. we compare the query processing performance of merge joins with pruned indexes as input to a state-of-the-art document-at-a-time algorithm that uses dynamic pruning on unpruned indexes and provide additional results for a proximity-enhanced variant of that state-of-the-art document-at-a-time algorithm. query processing per- formance is measured both by abstract measures and average query processing times for different cache settings. furthermore, we evaluate the effect of query log-based combined list pruning. additional results with clueweb demonstrate the scalability of our index tuning approach. as a third collection we use the textual content of the inex wikipedia collection from (cf. section . . ). we present results from our participation in the inex efficiency and ad hoc tracks. section . presents a novel hybrid index structure that accelerates cold cache query processing, trading off a reduced number of index lists for an increased number of bytes to read. please note that the techniques described in this chapter are not limited to this particular proximity scoring model (cf. section . . ) we use throughout the chapter: whenever bigram features, representing a proximity score contribution, can be stored in term pair index lists, our techniques can be applied as well. in section . which inves- tigates the feasibility of various proximity scoring models for top-k query processing, we have described which approaches can be cast into term pair index lists. . indexes our studies in section . have shown that by means of pruned term and combined index lists as input to a tl+cl processing strategy, we can achieve the best retrieval quality among the presented processing approaches for many pruning levels. we have described the abstract layout of these two index structures in section . . and will now discuss the efficient physical implementation of these index structures. the index tuning framework described in this chapter transparently supports all kinds of index compression. we will now introduce our proof-of-concept implementation of index compression which applies delta and v-byte encoding [cms , zm ]; we did not perform any specific optimization for the parameters, for example the number of bits to represent a score, but we think that the values we chose are reasonable. our inverted lists are usually sorted by docid, but may also be sorted by descending score (scorebm for term lists, accd for combined lists). due to the implementation of our tuning framework (cf. section . . ) which par- allelizes the indexing process across a cluster of servers, each index list is assigned to . index tuning for high-performance query processing one of several partitions. figure . depicts the general structure of our term list index. figure . : index and data files for tls. the hashcode of a term determines the partition where its term list (tl) is stored. for each partition we generate one index file and one data file. all data files together contain the complete index information and consist of key, value pairs: each key is a term whose value is its tl. the index files are used to find the start address to lookup in the data file where a term’s tl may be stored. each index file stores every kth key, where the keys are stored in ascending lexicographical order. every key in an index file is assigned to an address offset (in bytes) which points to the position in the data file of the corresponding partition where the key and its tl are stored. the access structure to find the inverted list for a given key is implemented analogously to that of mapfiles in hadoop [whi ]; again, this is just a proof-of-concept implementation, we could alternatively have implemented the access structure with b+-trees, for example. in the system’s initialization phase, before processing any query, all index files are loaded into main memory. to locate the inverted list for a key, we first determine its partition id by means of its hashcode. the key or its closest smaller neighbor key (in lexicographic order) is determined in the in-memory index using binary search, then the data file is searched linearly from the offset of that key until either the right list is . indexes found or a larger key is encountered; in the latter case, there is no list for that key in the data file, i.e., the key is not in the index. indexing combined lists (cls) works analogously to indexing tls, with the only difference that the keys are term pairs instead of terms and the values are cls instead of tls. our indexes are materialized with partitions and k= as step width, however these numbers are configurable. deltaoffsetnexttl maxscorebm (t ) idf(t ) #doc.s in tl(t ) header tl(t ) roundednormscorebm (d ,t ) roundednormscorebm (d ,t ) roundednormscorebm (d ,t ) roundednormscorebm (d ,t ) tl(t ) tl(t ) header tl(t ) as ce n d in g te rm o rd er roundednormscorebm (d ,t ) roundednormscorebm (d ,t ) roundednormscorebm (d ,t ) roundednormscorebm (d ,t ) t maxscorebm (t ) idf(t ) #doc.s in tl(t ) t as ce n d in g d o ci d as ce n d in g d o ci d deltaoffsetnexttl figure . : compressed tls in docid-order. we will now describe in detail how the data files are organized. figure . and figure . show the structure of compressed tls and cls stored in docid order, re- spectively. in both figures, we mark the encoding and data types by different kinds of lines: green solid lines indicate utf- encoding (consuming two bytes plus the number of utf- bytes), violet dotted lines a v-byte encoding (of flexible size), and orange dashed lines float-typed data (consuming bytes each). figure . shows that each tl(t) is preceded by a header that contains the utf- encoded term t, the v-byte encoded byte offset value to the beginning of the next tl (needed to search the right list in the data file), and the maximum scorebm value of tl(t) which is required to reconstruct the stored bm scores in the corresponding tl. furthermore, we maintain the idf(t) value that is required to process cls as described later. additionally, we store the number of documents for each tl. the actual tl contains a list of pairs that contain the docid and its rounded normalized bm score, . index tuning for high-performance query processing deltaoffsetnextcl maxacc (t ,t ) maxscorebm modidf (t ) #doc.s in cl(t ,t ) header cl(t ,t ) roundednormscorebm modidf (d ,t ) cl(t ,t ) cl(t ,t ) header cl(t ,t ) as ce n d in g te rm p ai r o rd er roundednormscorebm modidf (d ,t ) roundednormscorebm modidf (d ,t ) t $t maxscorebm modidf (t ) deltaoffsetnextcl maxacc (t ,t ) maxscorebm modidf (t ) #doc.s in cl(t ,t ) t $t maxscorebm modidf (t ) roundednormaccd (t ,t ) roundednormaccd (t ,t ) roundednormscorebm modidf (d ,t ) roundednormscorebm modidf (d ,t ) roundednormaccd (t ,t ) roundednormscorebm modidf (d ,t ) roundednormscorebm modidf (d ,t ) roundednormaccd (t ,t ) roundednormscorebm modidf (d ,t ) roundednormscorebm modidf (d ,t ) roundednormscorebm modidf (d ,t ) roundednormaccd (t ,t ) roundednormscorebm modidf (d ,t ) roundednormscorebm modidf (d ,t ) roundednormaccd (t ,t ) as ce n d in g d o ci d as ce n d in g d o ci d figure . : compressed cls in docid-order. where roundednormscorebm (d,t) is defined as round(( − ) · scorebm (d,t)/maxd′∈c(scorebm (d ′, t))). as this value is in [ , − ], it can be encoded into at most bytes with v-byte encoding. figure . shows that the header for each cl(ti, tj ) contains the utf- encoded term pair string ti$tj ($ is the term delimiter), and the v-byte encoded byte offset value to the term pair of the next cl in the same data file. furthermore, the header contains the maximum accd(ti, tj ) score in that cl named maxacc(ti, tj ), and the maximum scorebm modulo idf values for both scorebm dimensions in cl(ti, tj ) named maxscorebm modidf (ti) and maxscorebm modidf (tj ), respectively. we do not include idf scores in the index as they are not yet known at cl indexing time. as tls and cls are used in combination for query processing, the idf scores can be obtained from the tls at query processing time. like for each tl, for convenience reasons during query processing, we store the number of documents included in each cl. the actual cl contains a list of tuples; each tuple contains the docid plus three scores: • roundednormaccd(ti, tj ) = round(( − ) · accd(ti,tj ) maxd′∈c(accd′ (ti,tj )) ), • roundednormscorebm modidf (d,ti) = round(( − )· scorebm (d,ti) idf (ti) maxd′∈c scorebm (d ′,ti) idf (ti) ), and . parameter tuning • roundednormscorebm modidf (d,tj ) = round(( − )· scorebm (d,tj ) idf (tj ) maxd′∈c scorebm (d ′,tj ) idf (tj ) ). like in tls, each v-byte encoded rounded normalized score does not require more than two bytes. when both cls and tls are docid-ordered, the docid values in each list are first delta-encoded and then stored as v-bytes, and the score(s) of the entries are encoded as v-bytes with at most bytes per score. for score order, tls are sorted by descending scorebm which are delta-encoded and then stored as v-bytes, the corresponding docids are encoded as v-bytes. cls are sorted by descending accd scores which are delta-encoded and then stored as v-bytes; the corresponding docids and the scorebm contributions for the two terms represented by the combined list are encoded as v-bytes. in score order, ties are broken using docid. while ties are rare for term lists, they are more frequent for combined lists which is due to the fact that accd scores as sorting criterion in combined lists are more similar than bm scores as sorting criterion in term lists. . parameter tuning . . tuning as optimization problem we have demonstrated in section . that using term and combined index lists together for query processing can reduce processing cost by an order of magnitude compared to using only term index lists and a standard top-k algorithm. at the same time, the proximity component of the score helps to additionally improve result quality. however, these great properties come at a big price: an index that maintains complete informa- tion for all combined lists will be several orders of magnitude larger than the original collection of documents and is therefore infeasible even for medium-sized collections. we proposed to keep only prefixes of fixed length of each list, and demonstrated that this improved both result quality and query performance while greatly reducing index size. section . also included experiments indicating that term pair occurrences that are more than approximately positions apart (runs marked with accd ≥ . ) hardly play a role for result quality and can therefore usually be ignored. we take over this finding, so whenever we talk about term pair occurrences, we mean occurrences of dif- ferent terms within a window of at most positions in the same document. note, however, that all our methods are still valid when this constraint is relaxed. however, in section . , we did not provide any means for selecting the list length cutoff, which usually depends on the document collection and on the required result quality. there is a tradeoff between index size and quality: longer lists usually mean better results, but also a bigger index, while setting the length cutoff very low will greatly reduce index size, but at the same time also hurt result quality. this section introduces an automated method to tune index parameters such that both the size of the resulting index and the quality of results generated using this . index tuning for high-performance query processing index meet predefined requirements. (note that for the moment, our approach keeps all combined lists, but limits the information stored in each list. we will discuss in section . how a subset of all combined lists can be selected based on the occurrence of the pairs in a query log.) we will proceed as follows: we first define two parameters for tuning the index size, then we show how to estimate the size of an index given the tuning parameters. next, we define measures for the quality of a pruned index, and finally, we formally define index tuning as an optimization problem and show how to solve it. parameters we start with defining two parameters to tune the selection of index entries stored in each term or combined index list: • minimal score cutoff: we keep only index entries with a score that is not below a certain lower limit m. • list length cutoff: we keep at most the l entries from each list that have the highest scores. these two parameters allow us to systematically reduce the size of the resulting index with a controllable influence on result quality. figure . shows how the index size for gov , relative to an unpruned index, changes with varying l and m. figure . : relative index size with varying list length and minscore cutoffs. we denote the index consisting of all term index lists for collection c by t(c), and the index consisting of all term and combined index lists for c by i(c). we will . parameter tuning use the term inverted lists synonymously for index lists. we write i(c,l,m) for the index for document collection c that consists of term and combined index lists, where each list is limited to the l entries with highest score and the combined lists contain only entries with an accd-score of at least m. we use the similar notation t(c,l) for an index consisting of only term lists where each list contains only the l entries with highest score. note that we do not perform score-based pruning on term lists. we omit c when the collection is clear from the context. index size an important constraint in our optimization process is the maximal storage space that the final pruned index is allowed to occupy. we will denote the size of an index i in bytes by |i|. the size of an uncompressed index depends on ( ) the aggregated number n(i) of index entries in all lists, ( ) the size s of each index entry in bytes, ( ) the number of different keys k(i) (i.e., terms and/or term pairs) in the index, and ( ) the per-key overhead a of the access structure to associate a key with an offset in the inverted file. for a compressed index, s is not constant, but depends on the entry and the previous entry (due to delta encoding). we can formally define the size of the index i as |i| := s · n(i) + a · k(i). this simple definition is only valid when all index lists are of the same type. in our application, we may have two different index lists, term lists and combined lists, which may differ in number of entries, number of keys, and entry size. we therefore write nt(i) for the number of term list entries in index i and nc(i) for the number of combined list entries in i, with n(i) = nt(i) + nc(i), and use a similar notation for s and k(i). the more accurate size of an index i is then |i| := st · nt(i) + sc · nc(i) + a · (kt(i) + kc(i)). for an uncompressed index, assuming that integers and floats need bytes to store, we can set st := + = (document id and content score) and sc := + + + = (document id, proximity score, and content scores for both terms). we can estimate a similarly (for example, by assuming that a corresponds to the average key length plus the space for a pointer into the inverted file). we are typically interested in estimating the size of a pruned index i(l,m) or t(l) without actually materializing it (because materializing it takes a lot of time and the index may be too large to be completely materialized anyway). in the following we dis- cuss how to estimate |i(l,m)|, the adaptation to |t(l)| is straightforward. we consider only a sample p of all possible keys (i.e., terms and term pairs) and use it to approxi- mate the distribution of list lengths, given a list length cutoff l and minimal score cutoff m. formally, we denote by x(l,m) a random variable for the length of an index list in index i(l,m), and want to estimate the distribution f(l,m) of that random variable, i.e., estimate f(l,m; x) = p[x(l,m) ≤ x]. we sample the index lists for a subset p of n keys chosen independently from all keys; each sample yields a value xi(l,m) for the . index tuning for high-performance query processing length of that list in i(l,m). using the empirical distribution function [was ], we can estimate the cdf of this distribution as f̂n(l,m; x) := ∑n i= j(xi(l,m) ≤ x) n , where j(xi(l,m) ≤ x) = { if xi(l,m) ≤ x else . all we actually need is the expected length e[f(l,m)], which can again be estimated from the sample as xi(l,m) [was ]. assuming that there are k(p) keys in the sample, the expected number of entries in the index for the sample is therefore k(p) ·xi(l,m). to extend this estimate to the complete collection, we make sure that the size of p relative to the size of the collection is known, for example by sampling p% of all keys (this can be easily implemented using hash values of keys). the expected number of keys in the index is therefore ·k(p ) p , and the expected number of entries in the index is n(l,p) := · k(p) p · xi(l,m). the size estimator for a compressed index is built similarly, but instead of computing just the length xi(l,m), we materialize and compress the list, and use its actual size, avoiding the need to estimate the average value of s. as the space of feasible values for the parameters l and m is in principle infinitely large, we cannot compute the estimate for all combinations. instead, our implementa- tion considers only selected step sizes for l and m, computes estimates for those values, and interpolates sizes for other value combinations. we currently consider a step size of for l and . for m. index quality intuitively, the fewer entries we keep in each list, the more will reduce the quality of query results, since the probability that relevant documents are dropped from the pruned lists increases. the goal is to find values for m and l that maximize index quality while generating an index that fits into a predefined amount of memory. we now define different notions of index quality measures m(c,l,m,k) for index i(c,l,m) and a fixed number k of results. in the best case, a set of predefined reference or training topics Λ is available that include human assessments of the relevance of documents in the collection. such a set of topics can be build, for example, by first selecting a set of representative topics from a query log, then computing top-k results for different parameter settings, pooling those results per topic, and have human assessors determine the relevance of each result. alternatively, click logs could be used to estimate the relevance of results (but with much lower confidence). topic sets of this kind are frequently available for test collections such as trec .gov or .gov , but they cannot be reused for different document collections. given such a set Λ of reference topics, we denote by pΛ[k; i] . parameter tuning the average quality of the top-k results over all topics (e.g., precision@k or ndcg@k) computed using index i; our implementation currently uses average precision at k. we can now define effectiveness-oriented and efficiency-oriented absolute index quality: • effectiveness-oriented absolute index quality: this is quantified as the ratio of the quality of the first k results with the pruned index to the quality of the first k results with the unpruned index or, formally, pΛ[k;i(c,l,m)] pΛ[k;i(c)] . • efficiency-oriented absolute index quality: this is quantified as the reciprocal of the maximal query processing cost per query term and query term pair (i.e., l ) when the result quality of the pruned index is not worse than that of an unpruned term-only index without proximity lists (formally, when pΛ[k;i(c,l,m)] pΛ[k;t (c)] ≥ ), and otherwise. here, the effectiveness-oriented index quality measure aims at finding the best possible results by including as much proximity information in the index as possible. the efficiency-oriented quality measure, on the other hand, assumes that the quality of a term-only index is already sufficient and tries to minimize the length of index lists (assuming that query processing efforts are directly proportional to the lengths of index lists). for most applications, such a set of reference topics does not exist or would be too expensive to generate. in this case, we fix a set Γ of queries (e.g., representative samples from a query log) and use relative quality to estimate how good results with the pruned index are, compared to results with the unpruned index. we define, for each query γi ∈ Γ, the set of relevant results to be the top-k documents with some index configuration i′ and use this to compute the result quality of index configuration i. when the quality measure is precision, this boils down to computing the overlap of the top-k results with index configurations i and i′. we formally denote the resulting quality of index i as pΓ[k; i|i′]. we can now define relative index quality measures in an analogous way to the abso- lute measures defined before. however, we then would always favor index configurations that produce exactly the results of the corresponding unpruned index, as we assume that any results not in the top-k results with the unpruned index are non-relevant. this is often overly conservative in practice, as many of the new results will be relevant to the user as well, so it is usually sufficient to provide a “high” overlap, not a perfect one. we therefore introduce another application-specific tuning parameter α that denotes the threshold for relative quality above which we accept an index configuration. this is especially important for efficiency-oriented index quality: we cannot expect that we will get the same results with the pruned index with term and combined lists as with just the unpruned term lists, so achieving an overlap of there would be impossible. instead, we use i(c) also in that case and set α to a value below . • effectiveness-oriented relative index quality: this is the relative result quality of the pruned index pΓ[k; i(c,l,m)|i(c)]. . index tuning for high-performance query processing • efficiency-oriented relative index quality: this is the reciprocal of the maximal query processing cost per query term and query term pair (i.e., l ) when the relative result quality of the pruned index pΓ[k; i(c,l,m)|i(c)] is at least α and otherwise. index tuning we can now formally specify the index tuning problem: problem . given a collection c of documents, an upper limit s for the index size, a target number of results k, and an index quality measure m, estimate parameters m and l such that m(c,l,m,k) is maximized, under the constraint that |i(c,l,m)| ≤ s. when there is more than one combination of m and l that maximize the quality measure and satisfy the size constraint, pick one of them where the index size is minimal. note that even though the index is tuned for a specific number k of results, it can be still used to retrieve any other number of results. we will experimentally validate in section . . that result quality does not degrade much in these cases. . . implementation of the tuning framework we implemented our tuning framework within the mapreduce paradigm [dg ], di- viding the tuning process into several map-reduce operations. as stated before, the input to the tuning process is the collection c, a target index size s, a target number of results k, and an index quality measure m that includes a set of training topics t . additionally, we fix the fraction p of index keys (for both terms and term pairs) to be sampled. the tuning process then proceeds in the following order, where each step is implemented as a map-reduce operation: . compute index for sample and training topics. the map phase considers each document in the collection, parses it, and creates index entries for terms and term pairs that are either part of the sample or the training topics. these entries are still incomplete, because the final bm scores can be computed only when global properties of the collection are known, so they contain only term frequencies and document lengths (but already complete accd(t , t ) values for term pairs); their key is the term or term pair. the reduce phase then combines items with the same key into an index list, completing their scores as all global parameters of the score (average document length, number of documents, and document frequency of each term) are now known . the output of this phase are two indexes, one for the sample, the other for the set of training topics. at least hadoop . does not directly provide these global parameters to the reduce phase, so we need to store them in files and aggregate them in each reducer. the alternative would be to combine the initial map with a do-nothing reducer, include additional map-reduce operations to compute the global values, and then have a map-reduce operation with a do-nothing mapper and the reducer we just described. . parameter tuning . prepare the estimator for the index size. the map phase considers each key in the sample and computes, for each combination (l,m) it considers, the size s of the corresponding index list when pruned according to the l and m cutoffs (or the size of its compressed representation for compressed indexes), which is then written out with key (l,m). the algorithm starts with l = k and increases it by the step size for l, and considers all values for m, starting at and increasing it by the step size for m. the reduce phase combines all values for a single pair of (l,m) cutoffs and computes the average index list size for this cutoff. this value is then stored in an on-disk data structure as size estimate for (l,m). this phase also counts the overall number of keys in the sample. . prepare solving the optimization problem. in an initial map-reduce oper- ation, we compute the baseline precisions. the map phase then considers each topic with its corresponding assessments and computes, for each (l,m) pair pro- vided by the size estimator, the quality of the index for this topic. this can be efficiently implemented by a stepwise incremental join algorithm. in the first step, the algorithm sets l = k, i.e., it reads the first k entries from each list and incrementally computes results for (k,m), starting at the highest value for m and decreasing it by the step size of m. this yields, for each m, a temporary set of results with (partial) scores, from which the k documents with highest partial score are considered as result. the index quality for this result is computed and written out with key (k,m). if the score of the entry at position k is less than m (i.e., the list would be cut before it), the value m is marked as completed and will not be considered later. as soon as m exceeds the score of the last read entry, all smaller values for m will get the same index quality. in the following steps, the algorithm reads more entries from each list correspond- ing to the step size for l. assume that it read up to l entries from each list. it continues with the temporary set of partial results from the previous step and the highest value for m not yet marked as completed and repeats the above process. this phase ends when either all values for l have been considered or all lists have been completely read. it is evident that each entry of the lists is read at most once, so the complexity is linear in the aggregated number of entries in the index lists for this topic. note that for the efficiency-oriented quality measures, the map phase does not write the actual index quality measure introduced in section . . : instead of /l, the reciprocal of the maximal query processing cost per query term and query term pair, respectively, the map phase writes the actual precision of the top-k results. this is due to the fact that only (l,m) combinations are valid that can provide a given precision (averaged over all training topics in t). the reduce phase will transfer the precision values for each valid (l,m) combination to such an index quality measure later. the reduce phase averages, for each combination of (l,m), the per-topic index . index tuning for high-performance query processing quality values computed by the map phase, and computes the final index quality for this combination. for the efficiency-oriented measures, this means that it compares the average precision with the result quality of the term-only index and uses /l as final index quality when the average precision is high enough. if the (l,m) combination has a non-zero index quality, the reducer estimates its size using the size estimator. for each (l,m) combination with a non-zero index quality that matches the size constraint s, the reduce phase outputs an (l,m,q,s) tuple, where q is the index quality and s is the index size. . compute an approximate solution of the optimization problem. the following centralized phase scans all output tuples from the previous step and determines the tuple (l,m,q,s) with highest quality. optionally, it can further explore the solution space around (l,m) for better solutions. the output of this step is an approximate solution to problem . . materialize the final index. analogously to phase , the final index is ma- terialized in a single map-reduce operation. note that each mapper can already restrict the index entries it generates: for term pair entries, it does not emit any entries whose score is below m, and for term entries, it emits only the l entries with highest scores (which can be achieved using an additional combiner). an additional optimization for this step would be to generate only an approximation of the final index: if there are m mappers used to parse the collection, each map- per needs to emit at most β m · l entries, where β ≥ is a tuning parameter that steers the expected number of entries missing in the final index. . log-based term pair pruning even with relatively short list length cutoffs l̄, the overall space consumption of the pruned combined lists can still be pretty huge, because there are a lot more combined lists than term lists. on the other hand, the majority of combined lists are unlikely to ever occur in any query. a possible solution can be to selectively materialize only combined lists for term pairs that occur at least t times in a query log, which can drastically reduce the number of lists. when counting term pairs in the query log, we consider each query separately, build up all possible term pair combinations for that particular query, and finally count for each term pair the number of occurrences over the complete query log. however, when one of these unlikely queries is issued for which not all or even no combined lists are available, answering it using the pruned term lists and the available subset of combined lists only may affect the result quality for this query. figure . demonstrates this effect, using the aol query log and our training topics on .gov (see section . . ), with l = and m = . . the x-axis of this chart shows different values for the threshold t of term pairs in the aol log, and the y-axis shows the precision at results. the line with diamonds depicts the result of running our merge-based algorithm from section . . with the available index lists . log-based term pair pruning only. it is evident that the higher the threshold, the lower the result quality gets, which can be explained by fewer and fewer combined lists being materialized. for very high thresholds (not depicted in the chart), the precision drops to . , compared to . when using all lists. . . . . . . minimal frequency in the query log p re c is io n @ pruned lists only full tl when one pair list missing full tl when all pair lists missing figure . : effect of log-based pruning on query performance (on training topics). to overcome this negative effect, we propose to keep the unpruned term index lists when log-based pruning is applied. as soon as at least one combined list for a query term is missing (variant ) or, alternatively, all combined lists (variant ) for a query term are missing, we read the available combined lists and the unpruned term list for that term. this improves result quality to at least the quality of an unpruned term index, but at the same time incurs an increased cost for query evaluation as longer term lists have to be read. figure . also depicts the effect of these approaches on result quality (line with squares: read full term lists when at least one pair is missing; line with triangles: read full term lists when all combined lists are missing). it is evident that this combined execution helps to keep precision close to the level of the precision with the unpruned t(c) index only (which is . ). our tuning framework can be extended to consider only combined lists where the corresponding term pair occurs at least t times in a query log, and tunes the parameters to reach the optimization goals even with this limited selection of combined lists. maintaining only the term pair lists for term pairs that appear in previous queries (e.g., term pairs that appear in queries from a query log) . index tuning for high-performance query processing may be restrictive for rare queries that will appear in the future. for those few queries which are affected, the results of the proposed approach would not benefit from term proximity. however, we can still achieve a retrieval quality similar to that using bm scores as we can use the unpruned term lists. if rare queries become more frequent over time, one may consider using an updated query log file to update the index structures. to accelerate query processing and to save on accumulators, we split unpruned term lists in two pieces: the l̄ entries with highest scores are stored in docid order and the remaining entries in score order. when processing a query where some combined lists are missing, in a first phase we process the first piece of the term lists and the available combined lists with the merge-based algorithm from section . . , keeping all documents and their scores in memory. after that, in a second phase, a standard top-k algorithm (in our case nra, cf. section . ) consumes the second piece of the term lists, using the already read documents as candidates. the accd contribution for non-available combined lists is in both steps. this algorithm will terminate more quickly than running it on the unpruned term lists alone, and will usually give better results due to the proximity score from the combined lists. we give a more detailed explanation of how we process queries for the case of a -term-query {t , t , t , t } where one pruned combined list is missing (due to non- sufficient frequency of that term pair in the query log). w.l.o.g. assume that the missing combined list is cl(t , t ). for both variants, we load pruned cls for (t , t ), (t , t ), (t , t ), (t , t ), and (t , t ). for variant , we load the pruned tls for t and t , the unpruned tl for t and for t as at least one combined list for t and at least one pruned combined list for t is missing, namely (t , t ). in the first phase, we process the pruned tls, the first piece (docid-ordered) of the unpruned tl for (t , t ), and the available pruned cls using an n-way merge join algorithm. in the second phase, we process the second, score-ordered piece of the unpruned tl for (t , t ) using nra with the already seen documents as candidates. for variant , we load only pruned tls for all query terms as for every query term not all combined lists are missing. as we work with pruned lists only, we only execute an n-way merge join on the pruned lists, the second phase is not needed. . experimental evaluation this section presents results of a large-scale experimental evaluation of our techniques with two standard text collections. to facilitate reading, we first give a short overview of the content and the goals for each subsection. section . . gives details about the experimental setup and the employed test beds. section . . describes the evaluation of our index tuning techniques from section . for different result size cardinalities ( and ). both for effectiveness- and efficiency-oriented index quality measures, we present parameter tuning results given a size limit for the pruned indexes. we present results that tune indexes in the presence (absolute index quality) and absence (relative index quality) of relevance assessments. the goal of section . . is to show the . experimental evaluation feasibility of our index tuning techniques. section . . compares the query processing performance of merge joins with pruned indexes as input to the recently proposed block-max wand (bmw) algorithm [ds ], a state-of-the-art document-at-a-time algorithm that uses dynamic pruning on unpruned indexes. besides the original bmw, we provide additional results for our proximity score-enhanced bmw variant. the goal of section . . is to compare the query performance of merge joins with pruned indexes to dynamic pruning with unpruned indexes. the query processing performance is measured both by abstract measures (e.g., the number of opened lists, average number of entries and bytes read from disks) and average query processing times for hot and cold cache settings. a running system (i.e., a warm cache scenario) is simulated using an lru-based cache. for various cache sizes, we report cache hit ratios, the number of non-cached lists, the warm cache query processing times, and for bmw, in addition, the number of read blocks. section . . evaluates the effect of query log-based combined list pruning, one way to shrink the index size that is orthogonal to index compression techniques. section . . summarizes the conclusions from section . . to section . . . section . . presents additional results with clueweb and aims at demonstrating the scalability of our index tuning approach by means of similar experiments as the ones shown in section . . . section . . describes our efforts that apply our tuning framework to the inex test bed for the efficiency track. . . setup we evaluated our methods with two standard text collections from trec , the gov collection and the clueweb collection (cf. section . . for more details about both collections). the trec gov collection consists of approximately million docu- ments from u.s. governmental web sites with an uncompressed size of approximately gb. we used the ad hoc task topics from the trec and terabyte tracks (cf. appendix b, tables b. and b. ) as training topics for tuning index pa- rameters, and the ad hoc task topics from the trec terabyte track (cf. appendix b, table b. ) for testing the quality of results. we used the aol query log for the log-based technique. we measure result quality as precision values p@k, i.e., the average number of relevant results among the first k results and additionally report normalized discounted cumulative gain (ndcg@k) [jk ] that considers the order of results, not the result set as a whole. the clueweb collection consists of approximately billion web documents crawled in january and february . following standards at the trec web track, we consider only the approximately million english documents (e.g., also used by [nc ]), from which we chose the % documents with the smallest probabilities to be spam according to the waterloo fusion spam ranking (spaminess has also been http://trec.nist.gov http://trec.nist.gov/data/terabyte.html http://gregsadetsky.com/aol-data/ http://boston.lti.cs.cmu.edu/data/clueweb / http://durum .uwaterloo.ca/clueweb spam/ . index tuning for high-performance query processing used in [bfc ] for example). the resulting document set has an uncompressed size of about tb. we use the topics from the ad hoc task of trec web track (cf. appendix b, table b. ) to train and optimize the index parameters; documents without assessment are considered non-relevant. the topics from the ad hoc task of web track (cf. appendix b, table b. , non-assessed topics are marked) are employed as test topics. due to a few missing relevance assessments for the test top- ics, we only provide precision values for our runs submitted to web track , based on a subset of topics with assessments as published in our contribution to trec [bs ]. the most significant part of our experiments is built on the gov collection, since the number of available topics for the clueweb collection is lower and the assess- ments sparser than for the gov counterpart. therefore, we run only a limited set of experiments on the clueweb collection and report detailed tuning results for gov only. as an additional test bed we employ the test bed from inex . the inex wikipedia collection from consists of approximately . million articles and . billion elements. there are two types of queries used in our experiments: type a topics from the ad hoc track which includes classic ad hoc-style focused passage or element retrieval with a combination of nexi co and cas queries. they are partially enriched with phrasetitle elements that indicate important phrases in the title field. type b topics have been generated from the type a topics by running rocchio- based blind feedback on the results of the article-only ad hoc reference run. therefore, type b topics can consist of partly more than keywords. we show results from our participation in the inex ad hoc and efficiency tracks where we evaluate co queries (i.e., title fields and partially phrasetitle fields). type a topics are listed in appendix c, table c. to c. , type b topics are not listed due to their length. whenever we report times for parameter tuning or index construction, they were measured on a cluster of servers in the same network, where each server had cpu cores plus virtual cores through hyperthreading, gb of memory, and four local hard drives of tb each. the cluster was running hadoop . on linux, with replication level set to two. query execution times are reported using a single core of a cpu of a single node in the cluster. all algorithms are implemented in java . . we distinguish between test indexes and full indexes: while test indexes contain only lists for terms that are part of topics in a given test bed and term pairs that can be built from each topic, full indexes do not make this restriction, but contain lists for all terms and term pairs (occurring in a window of size w= ). if not explicitly stated differently, we build up test indexes to keep the indexing effort manageable as to both the time required for index construction and the required space on disk. hence, we can maintain many indexes for evaluation on the same disk. http://trec.nist.gov/data/web .html http://trec.nist.gov/data/web .html . experimental evaluation . . index tuning on gov we evaluated our index tuning techniques from section . for different maximal index sizes and result counts ( and ). we report all results in this section with and without index compression. we are aware of the fact that compression is preferable to using uncompressed indexes, because the data can be read faster and decompressing is less expensive than reading more data. we do not exclude experiments without com- pression from this section as we want to be able to quantify the effects of compression within our tuning framework. the effect of log-based combined list pruning will be evaluated in section . . . for each setting, we first estimated index parameters using the training topics, built an index with these parameters, and then evaluated result quality on the test topics. absolute index quality table . shows the results of index tuning on the training topics with selected size limits below the collection size, for uncompressed indexes. in this table, each row shows results for a given index size constraint and number of query results, namely the resulting index parameters, the estimated and real index size for these parameters, and the result quality on the training and test topics with this index. the rows with size limit ∞ denote the corresponding unpruned indexes with term+combined lists (named i(c)) or term lists (named t(c)), respectively. to build up the unpruned combined lists, we consider only term pair occurrences within a text window of fixed size w = as used in section . . estimating one set of parameters took approximately hours, where about . hours were required for the first map-reduce phase to build the index for the sample and the training topics. the time for building the final index strongly depends on the chosen parameters; for a full index with up to entries per list and a score threshold of . , this took less than five hours on our cluster. opt. size size[gb] p@k on ndcg@k on goal k limit l m est. real train test train test gb . . . . . . . gb . . . . . . . effective- gb . . . . . . . ness ∞ i(c) . . . . . oriented gb . . . . . . . index gb . . . . . . . quality gb . . . . . . . ∞ i(c) . . . . . efficiency- gb . . . . . . . oriented gb . . . . . . . index ∞ t (c) . . . . . quality gb . . . . . . . ∞ t (c) . . . . . table . : gov : index tuning results for absolute index quality without index com- pression. it is evident that all indexes with the estimated parameters meet the index size . index tuning for high-performance query processing constraint. for the effectiveness-oriented quality goal, all precision results (for the training and, more importantly, also for the test topics) are better than the precision with an unpruned term-only index (significantly better under a paired t-test with p < . when the size limit is at least gb), so the additional combined index lists help to improve precision even when they are pruned. for the efficiency-oriented quality goal, it turns out that already very short list prefixes ( entries for top- , entries for top- results) are enough to yield results with a quality comparable to standard term indexes, given a sufficiently large index size constraint. if this constraint is too tight, short lists cannot guarantee the quality target. . . . . . . . . . . n d c g @ k k . . . . . . . . . . . . . p @ k k , . , . , . , . , . , . i(c) , . , . , . t(c) figure . : p@k and ndcg@k on test topics for effectiveness- and efficiency-oriented absolute index quality without index compression. although we tune for document retrieval of either the best k= or k= result documents, we are aware that sometimes it may be necessary to retrieve a number of results k′ that is different from the number of results k used for tuning. figure . shows p@k and ndcg@k values for the test topics with all index configurations from table . for varying numbers of retrieved results, namely , , , and result documents. it is evident that result quality with indexes tuned for k= results does not degrade much when returning longer result lists, i.e., choosing k′ greater than . differences for ndcg are a bit larger than for precision as we tuned our indexes using the precision measure. compared to the original runs from the trec terabyte track [bcs ], our tuned indexes do well in terms of precision. the best p@ we get for the effectiveness-oriented goal is . (for ( , . )), none of the p@ values underscores . . our best indexes outperform of competitors in p@ . note that our index tuning was not carried out with the trec topics but with the training topics and for retrieval of the top- or top- results instead of the top- , which imposes a penalty on us. for the efficiency-oriented goal the best index ( , . ) reaches a p@ of . ; very short list lengths deteriorate in later precision values, at . for ( , . ). table . , which has the same layout as the table before, shows the results of in- dex tuning on the training topics with selected size limits below the collection size for . experimental evaluation compressed indexes. our index compression scheme is effective: an index in configu- ration ( , . ) requires . gb uncompressed, but only . gb compressed, an index in configuration ( , . ) requires . gb uncompressed, but only . gb compressed, and an index in configuration ( , . ) requires . gb uncompressed, but only . gb compressed. opt. size size[gb] p@k on ndcg@k on goal k limit l m est. real train test train test gb . . . . . . . gb . . . . . . . gb . . . . . . . effective- gb . . . . . . . ness gb . . . . . . . oriented ∞ i(c) . . . . . index gb . . . . . . . quality gb . . . . . . . gb . . . . . . . gb . . . . . . . gb . . . . . . . ∞ i(c) . . . . . gb . . . . . . . gb . . . . . . . gb . . . . . . . efficiency- gb . . . . . . . oriented gb . . . . . . . index ∞ t (c) . . . . . quality gb . . . . . . . gb . . . . . . . gb . . . . . . . gb . . . . . . . gb . . . . . . . ∞ t (c) . . . . . table . : gov : index tuning results for absolute index quality with index compres- sion. it is evident that all indexes with the estimated parameters meet the index size constraint, and the size estimator only slightly overestimates the final index size. for the effectiveness-oriented quality goal, all precision results for indexes with a size constraint of at least gb (for the training and, more importantly, also for the test topics) are better than the precision with an unpruned term-only index (significantly better under a paired t-test with p < . when the size limit is at least gb), so the additional combined index lists help to improve precision even when they are pruned. ndcg results behave similarly. for the efficiency-oriented quality goal, it turns out that already very short list prefixes ( entries for top- , entries for top- results) are enough to yield results with a quality comparable to standard term indexes, given a sufficiently large index size constraint. if this constraint is too tight, short lists cannot guarantee the quality target. note that index tuning for different index size limits may result in identical optimal index parameters (l,m); for example, efficiency-oriented index quality tuning for top- . index tuning for high-performance query processing retrieval and size limits between gb and gb results in ( , . ). recall from the description of efficiency-oriented index quality and problem in section . that index list pruning aims at minimizing the list length l and as an afterthought the index size; anyway, the respective pruned index has to provide at least the p@ quality of unpruned term lists. as (l,m) combinations with l < or l = and m > . cannot provide the same p@ values that unpruned term lists provide, the optimal index parameters ( , . ) remain constant. in this case, the resulting pruned index does not use the full amount of space given by the size limit, which comes as a consequence of the efficiency-oriented quality definition. efficiency-oriented tuning aims at minimizing the maximum query processing cost per list and provides at least the same retrieval quality as using unpruned t(c) indexes. if the retrieval quality goal can be met with small indexes, we do not waste space. . . . . . . . . . . . . . p @ k k , . , . , . , . , . , . , . , . , . , . i(c) . . . . . . . . . . . n d c g @ k k figure . : p@k and ndcg@k on test topics for effectiveness-oriented absolute index quality with index compression. . . . . . . . . . . . . . p @ k k , . , . , . , . , . , . , . t(c) . . . . . . . . . . . n d c g @ k k figure . : p@k and ndcg@k on test topics for efficiency-oriented absolute index quality with index compression. . experimental evaluation although we tune for retrieving either the best k= or k= result documents, it can often happen that a different number of results should be retrieved. figures . and . show precision and ndcg values for the test topics with all index configurations from table . for varying numbers of retrieved results, namely , , , and result documents. in figure . , for each choice of k, the rightmost bar represents i(c), the baseline for effectiveness-oriented tuning; in figure . , the rightmost bar for each k represents t(c), the baseline for efficiency-oriented tuning. it is evident that result quality with pruned indexes tuned for k= results does not degrade much relative to the result quality provided by t(c) (the baseline for efficiency-oriented tuning) or i(c) (the baseline for effectiveness-oriented tuning) when returning more results. even if we select the weakest setting at late precision values, namely ( , . ), we still achieve a p@ value of . compared to . for t(c). differences for ndcg are slightly larger, which could be expected since we tuned for precision, not ndcg. relative index quality we first performed an experiment to estimate good values for α, the application-specific tuning parameter that denotes the threshold for relative quality above which we accept an index configuration: we computed, for a selection of possible values for α, optimal index parameters (l,m) for the training topics under relative index quality, then instan- tiated the corresponding pruned indexes and compared the resulting absolute precisions (using the assessments from trec) to the precision of the same topics with i(c) and t(c). the results of this experiment are displayed in table . . this allows to esti- mate values for α that are sufficient to yield similar precision values as the unpruned term-only index for the efficiency-oriented measure. a good choice for α is . as p[ ;i(c,l,m)] p[ ;t (c)] is close to which means that, using pruned term and pruned combined lists for top- document retrieval, we achieve a precision comparable to that using unpruned term lists. α . . . . . . p[ ;i(c,l,m)] p[ ;i(c)] . . . . . . p[ ;i(c,l,m)] p[ ;t (c)] . . . . . . table . : relative result quality for different values of α. table . gives tuning results for relative index quality with uncompressed indexes. we can get close to the result quality for top- results of an unpruned index with the effectiveness-oriented techniques (we even get better quality for some scenarios), for both the test and the training topics. for top- results, the situation is slightly worse, there is a small gap to the quality of an unpruned index (which, however, may be tolerable). for the efficiency-oriented indexes, we achieve comparable or even better precision values than for the unpruned text indexes, at a reasonable index size of less than gb. figure . depicts p@k and ndcg@k values for efficiency-oriented and effectiveness-oriented index quality goals on all (l,m) combinations from table . , . index tuning for high-performance query processing . . . . . . . . . . n d c g @ k k . . . . . . . . . . . . p @ k k , . , . , . , . , . , . i(c) , . , . t(c) figure . : p@k and ndcg@k on test topics for effectiveness- and efficiency-oriented relative index quality without index compression. for varying numbers of retrieved results. it is evident that the relative index quality approach ensures retrieval quality on test topics even without relevance assessments. like stated before, the result quality of indexes tuned for k= results does not degrade much for more retrieved results relative to t(c) and i(c), respectively and for both retrieval measures. opt. size size[gb] overlap p@k on ndcg@k on goal k limit l m est. real on train train test train test gb . . . . . . . . gb . . . . . . . . effective- gb . . . . . . . . ness ∞ i(c) . - . . . . oriented gb . . . . . . . . index gb . . . . . . . . quality gb . . . . . . . . ∞ i(c) . - . . . . efficiency- gb . . . . . . . . oriented ∞ t (c) . - . . . . index gb . . . . . . . . quality ∞ t (c) . - . . . . table . : gov : index tuning results for relative index quality without index com- pression. table . gives tuning results for relative index quality with compressed indexes. we can get close to the result quality for top- results of an unpruned index with the effectiveness-oriented techniques (we even get better quality for some scenarios), for both the test and the training topics. for top- results, the situation is slightly worse, there is a small gap to the quality of an unpruned index (which, however, may be tolerable). for the efficiency-oriented indexes, we achieve comparable or even better precisions than the unpruned term indexes, at a reasonable index size of less than gb. figures . and . depict precision and ndcg values for efficiency-oriented and effectiveness-oriented index quality goals on all (l,m) combinations from table . , . experimental evaluation opt. size size[gb] overlap p@k on ndcg@k on goal k limit l m est. real on train train test train test gb . . . . . . . . gb . . . . . . . . gb . . . . . . . . effective- gb . . . . . . . . ness gb . . . . . . . . oriented ∞ i(c) . - . . . . index gb . . . . . . . . quality gb . . . . . . . . gb . . . . . . . . gb . . . . . . . . ∞ i(c) . - . . . . gb . . . . . . . . gb . . . . . . . . gb . . . . . . . . gb . . . . . . . . efficiency- gb . . . . . . . . oriented ∞ t (c) . - . . . . index gb . . . . . . . . quality gb . . . . . . . . gb . . . . . . . . gb . . . . . . . . ∞ t (c) . - . . . . table . : gov : index tuning results for relative index quality with index compres- sion. for varying numbers of retrieved results. it is evident that the relative index quality approach ensures retrieval quality on test topics even without relevance assessments. . . query processing with gov we compared the query processing performance using pruned indexes as an input for our merge-based technique from section . . with the recently proposed block-max wand (bmw) algorithm [ds ] as a state-of-the-art document-at-a-time algorithm. bmw requires index lists sorted in document order where entries are grouped in blocks of fixed size; for each block, the maximal score, the maximal document id, and its size are maintained to enable skipping complete blocks during execution. we extended bmw to support proximity scores, providing two kinds of index lists as input: • term index lists as described in section . . , but ordered by document id, and • proximity index lists as described in section . . , but ordered by document id. both kinds of index lists are augmented by the block structure. we compress the document ids by delta- and v-byte encoding and store all scores using v-byte encoding. the block size is documents as used in [ds ]. we denote the respective index consisting of all term index lists for collection c by t(c)bm w and the index consisting of all term and proximity index lists for c by i′(c)bm w . in our implementation of bmw, skipped blocks are not read from disk if the index list is not in memory. note . index tuning for high-performance query processing . . . . . . . . . . . . p @ k k , . , . , . , . , . , . , . , . , . i(c) . . . . . . . . . . n d c g @ k k figure . : p@k and ndcg@k on test topics for effectiveness-oriented relative index quality with index compression. . . . . . . . . . . . . p @ k k , . , . , . , . , . , . , . t(c) . . . . . . . . . . n d c g @ k k figure . : p@k and ndcg@k on test topics for efficiency-oriented relative index quality with index compression. . experimental evaluation that it may seem appealing to simply store term position information in the term list entries and use this for proximity scoring. however, it would no longer be possible to skip blocks with this simple solution since there are no maximal proximity scores. on the other hand, using precomputed proximity lists could help to improve performance (as shown, for example, in section . for nra, a standard top-k algorithm and topx in rr-last mode). please note that bmw evaluates queries in a disjunctive manner like the n-way merge joins described in section . . : this means that matched documents neither have to contain all query terms nor all query terms have to appear within a maximum distance to each other. further note that any processing algorithm would show similar performance when run on the pruned lists; the goal of this section is to compare query performance with pruned indexes to dynamic pruning on unpruned indexes. to assess processing performance, we mainly use query processing times, but we also consider abstract cost measures such as the number of opened lists, the average number of entries or bytes read from disk. these abstract measures are not influenced by transient effects like caching or other processes running on the same machine and mask out the quality of the actual implementation. we consider two extreme settings: ( ) with hot caches, all index lists are loaded into memory before running the first query, corresponding to the setting used in the bmw paper [ds ]. ( ) with cold caches, all index lists are completely loaded from disk, which is ensured by flushing the file system cache before running each query, which corresponds to a very conservative setting. we will examine other caching scenarios later in this section. processing times are measured with a single-threaded, java-based implementation running on a single core of a single cluster node. these measurements were taken by running the complete batch of queries five times and taking the average. in addition, we invoke the garbage collector before running each query to avoid side effects caused by garbage collection during query execution. whenever we use the average symbol �, we build the average over all topics of the query load under consideration. for the mere sake of completeness, we additionally provide nra-based query performance values for runs that employ indexes without compression. in the tables, those runs are denoted t(c) and i(c), respectively. for all measurements in this section, processing the training topics accessed term lists and combined lists, and processing the test topics accessed term lists and combined lists (for both pruned and non-pruned index lists). results with uncompressed indexes are depicted in tables . and . for training and test topics that show the number of read index entries as well as the number of bytes and runtimes with cold and warm caches, averaged over all topics. results with the top-k algorithm nra on the unpruned indexes are included in the rows for i(c) and t(c), respectively. for the efficiency-oriented indexes, these results clearly demonstrate that query processing on the pruned indexes is up to two orders of magnitude more efficient than on the unpruned indexes. for top- results, we require less than , reads per topic on average with an index of gb size, which is less than one disk block per index list. for the effectiveness-oriented indexes, the pruned index requires . index tuning for high-performance query processing opt. size size[gb] �reads· �bytes· �thot[ms] �tcold[ms] goal k limit l m est. real train test train test train test train test gb . . . . . . . . . . . gb . . . . . . . . . . . effective- gb . . . . . . . . . . . ness ∞ i(c) . . . . . . . . . oriented gb . . . . . . . . . . . index gb . . . . . . . . . . . quality gb . . . . . . . . . . . ∞ i(c) . . . . . . . . . efficiency- gb . . . . . . . . . . . oriented gb . . . . . . . . . . . index ∞ t (c) . . . . . . . . . quality gb . . . . . . . . . . . ∞ t (c) . . . . . . . . . table . : gov : query performance for absolute index quality without index com- pression. opt. size size[gb] �reads· �bytes· �thot[ms] �tcold[ms] goal k limit l m est. real train test train test train test train test gb . . . . . . . . . . . gb . . . . . . . . . . . effective- gb . . . . . . . . . . . ness ∞ i(c) . . . . . . . . . oriented gb . . . . . . . . . . . index gb . . . . . . . . . . . quality gb . . . . . . . . . . . ∞ i(c) . . . . . . . . . efficiency- gb . . . . . . . . . . . oriented ∞ t (c) . . . . . . . . . index gb . . . . . . . . . . . quality ∞ t (c) . . . . . . . . . table . : gov : query performance for relative index quality without index compres- sion. up to one order of magnitude less reads than the unpruned index. for absolute index quality tuning, query performance for larger indexes is actually better, because the smaller indexes need to use long list length cutoffs, but high minscore cutoffs to meet the index size constraint, which makes query processing expensive. for relative index quality tuning, query performance for larger indexes slightly deteriorates, because the larger indexes use longer list length cutoffs but also provide higher precision values. the runtimes reported in these tables demonstrate that the theoretical cost advantage of our approach is very beneficial in practice for hot cache as well as cold cache scenarios, with average hot cache times of about ms for top- retrieval with the best efficiency- oriented index. this corresponds to two to three orders of magnitude performance advantage over standard top-k algorithm evaluation on unpruned term index lists. unlike that, the number of read items and the runtime of our technique does not . experimental evaluation increase when retrieving more than results by the nature of the merge join. opt. size size[gb] �reads· �bytes· �thot[ms] �tcold[ms] goal k limit l m est. real train test train test train test train test gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . effective- gb . . . . . . . . . . . ness gb . . . . . . . . . . . oriented ∞ i′(c)bm w . . . . . . . . . index gb . . . . . . . . . . . quality gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . ∞ i′(c)bm w . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . efficiency- gb . . . . . . . . . . . oriented ∞ t (c)bm w . . . . . . . . . index gb . . . . . . . . . . . quality gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . ∞ t (c)bm w . . . . . . . . . table . : gov : query performance for absolute index quality with index compres- sion. tables . and . show the result of the performance experiments for training and test topics. they include the number of read index entries as well as the number of bytes and runtimes with cold and hot caches, averaged over all topics. results with bmw on unpruned indexes are included in the rows for i′(c)bm w and t(c)bm w ; here, we only count the number of index entries in blocks we load into main memory, not in all blocks of the lists. due to anomalies in the corresponding tables in [bs ], we have measured the average cold cache times again and have updated tables . and . accordingly. for the efficiency-oriented indexes, these results clearly demonstrate that query processing on the pruned indexes can be one order of magnitude more efficient than bmw for both hot and cold caches. for top- results, we read less than , index entries (approximately kb) per topic on average with an index of . gb size, whereas bmw needs to access more than , entries per topic. similar results can be achieved for top- results with an index of . gb size. for the effectiveness- oriented indexes, the performance gap is smaller. note that query performance for larger indexes is sometimes better because the smaller indexes need to use long list length cutoffs, but high minscore cutoffs to meet the index size constraint, which makes query processing expensive. for relative index quality tuning, query performance for larger indexes slightly deteriorates, because the larger indexes use longer list length cutoffs but usually also provide higher precision and ndcg values. the runtimes . index tuning for high-performance query processing opt. size size[gb] �reads· �bytes· �thot[ms] �tcold[ms] goal k limit l m est. real train test train test train test train test gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . effective- gb . . . . . . . . . . . ness ∞ i′(c)bm w . . . . . . . . . oriented gb . . . . . . . . . . . index gb . . . . . . . . . . . quality gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . ∞ i′(c)bm w . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . efficiency- gb . . . . . . . . . . . oriented ∞ t (c)bm w . . . . . . . . . index gb . . . . . . . . . . . quality gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . gb . . . . . . . . . . . ∞ t (c)bm w . . . . . . . . . table . : gov : query performance for relative index quality with index compression. reported in these tables demonstrate that the theoretical cost advantage of our approach is very beneficial in practice for hot cache as well as cold cache scenarios, with average hot cache times of about ms for top- retrieval with the best efficiency-oriented index. please note that we have used pruned test indexes in the tables. the ( , . ) test index needs on average . ms and . ms in a cold cache scenario for training and test topics, respectively. this seems to be extremely fast and is probably influenced by the dense arrangement of the test index structures on the hard disk and the resulting non-controllable disk caching side effects. to allow a comparison, we have built the ( , . ) full index: for training and test topics �tcold values are . ms and . ms, respectively. unlike bmw, the number of read entries and the runtime of our technique does not increase when retrieving more than results by the nature of the merge join (however at the price of a slightly reduced result quality). as an interesting side result, we see that the additional proximity lists can sometimes improve query performance for bmw because they allow tighter score bounds, which is similar to the earlier results in chapter for the standard top-k algorithm nra and topx in rr-last mode. for top- retrieval, bmw with term and proximity lists (denoted as i′(c)bm w in table . ) takes on average ms with hot caches for the training topics and reads on average k entries, whereas using only term lists (t(c)bm w ) takes on average ms and reads on average k entries. with cold caches, bmw with only term indexes is better due to the expensiveness of opening more index lists ( ms vs ms). . experimental evaluation cache cache hit ratio #non-cached l m size[mb] [bytes] [#lists] lists �twarm[ms] . . % . % , . . . % . % , . . . % . % , . . . % . % , . . . % . % , . table . : efficiency track: real system performance, merge join, various lru cache sizes with a ( , . ) full index. for efficiency reasons, storing position information in the term-only index to com- pute proximity scores on the fly as a document is encountered is not an option for us. as argued in section . . , that approach is not feasible for top-k style processing as it is not possible to compute tight score bounds for candidates which in turn disables dynamic pruning. to compute the top-k results efficiently, we need to precompute proximity informa- tion into index lists that can be sequentially scanned and compute tight score bounds for early pruning. as briefly discussed in section . , an alternative would be to first determine a set of candidate documents with ’good’ term list scores and later re-rank only the candidate documents by computing proximity scores from their position infor- mation (cf. section . . for an example). this requires a large enough set of candidate documents in the first step, which is potentially expensive to compute - if we choose the set too small, we may leave out potentially relevant documents and decrease result quality for the top-k results. as shown in table . for bmw (t(c)bm w ), this can easily cause high additional processing costs. in a second line of experiments, we ran the , queries from the trec terabyte efficiency track with the fastest index configuration determined by efficiency- oriented index-tuning, the ( , . ) full index setting, comparing it again to bmw. in addition to the hot and cold cache settings used before, we also consider warm caches, a more realistic simulation of a running system. we implemented an lru cache of configurable size to store the least recently used index lists. this lru cache was emptied before running the first query; we then ran all queries sequentially. to minimize side effects caused by file system caching and garbage collector activities during query processing, we emptied the file system cache and invoked the garbage collector before executing each query. in this scenario that corresponds to a steady-state execution in a running search engine, processing with the ( , . ) full index takes less than ms on average for an lru cache size of mb, compared to an average of . ms for hot caches and ms for cold caches, respectively. table . shows performance values for query processing with a ( , . ) full index for different cache sizes. it depicts the cache hit ratio both for the number of read bytes (cache hit ratio[bytes]) and number of read lists (cache hit ratio[#lists]) as well as the number of non-cached lists and the average warm cache running times. even for a very small cache size of mb, we need less than ms on average to process . index tuning for high-performance query processing cache cache hit ratio #non-cached k index size[mb] [bytes] [#lists] lists #read blocks �twarm[ms] t (c)bm w . % . % , , , . t (c)bm w . % . % , , , . t (c)bm w . % . % , , , . i′(c)bm w . % . % , , , . table . : efficiency track: real system performance, bmw, various lru cache sizes. a query, and starting with a cache size of mb, we need less than ms on average. note that the overall number of index lists used in this experiment is , . number of query terms ø time[ms], mb ø time[ms], mb ø time[ms], mb ø time[ms], mb ø time[ms], gb time[ms]), mb time[ms]), mb time[ms]), mb time[ms]), mb time[ms]), gb figure . : efficiency track: real system performance for a ( , . ) full index for various query and lru cache sizes. figure . depicts the average running times and their standard deviations de- pending on the number of keywords in the query and the cache size. the larger the cache size, the higher the cache hit ratio which lowers the average processing time. as expected, the average running time is monotonous in the number of query terms as more query terms potentially lead to more fetched index lists at processing time. however the standard deviation of running times for a given query length is low (and does not depend on the cache size) such that the average running time is usually a good approximation for the expected running time of a query. table . shows performance values for query processing with bmw on t(c)bm w and i′(c)bm w indexes with varying cache sizes. the number of processed lists for this query load amounts to , for t(c)bm w which consist of , , , blocks in . experimental evaluation . gb size, and , for i′(c)bm w indexes which consist of , , , blocks in . gb size . as expected, increased cache sizes help to speed up query processing ( . ms vs . ms for mb vs gb lru cache size with t(c)bm w ). i′(c)bm w is slower than t(c)bm w at the same cache size: although the number of read blocks decreases, more non-cached lists have to be loaded. we see that the run time increases with growing k. while processing queries with t(c)bm w with mb lru cache size takes . ms to retrieve k= results, the same index requires . ms to retrieve k= results. in contrast, the run time is independent of the result set cardinality for our pruned indexes as they are processed completely by an n-way merge join. if we compare the warm cache performance of our pruned lists processed in a merge join algorithm (table . ) to that of bmw with a t(c)bm w index (table . ) at an lru cache size of mb, we observe that the number of non-cached lists that have to be fetched from hard disk is similar ( , vs , ). anyway we achieve a speedup of a factor of (�twarm= . ms) for top- and a factor of for top- retrieval (�twarm= . ms), since the cache hit ratio measured in bytes is about % for our approach compared to less than % for the bmw approach. to achieve a similar cache hit ratio for the t(c)bm w index as for our approach, we need to increase the lru cache size to gb. this means that, compared to our approach, we need times as much cache at a processing speed that is times slower. . . log-based pruning with gov we evaluated our log-based technique for pruning term pairs from the index, using the same training and test queries as before and the aol query log. note that all indexes in this section are uncompressed as we consider log-based pruning and compression of indexes as orthogonal ways to shrink index sizes whose effects are shown separately. table . shows index tuning results for t= , i.e., materializing combined lists for opt. size size[gb] p@k on goal k limit l m est. real train test effectiveness- gb . . . . . oriented gb . . . . . index quality gb . . . . . efficiency- gb . . . . . oriented gb . . . . . index gb . . . . . quality gb . . . . . table . : index tuning results with log-based pruning (t= ) for absolute index quality. term pairs that occur at least once in the query log. it is evident that using log-based pruning helps to get smaller index sizes for the efficiency-based techniques. the index size reduces down to . gb, which is approximately twice the size of the unpruned, uncompressed term index ( . gb). the result quality of indexes created by log-based there are more lists here because our pruning technique may completely drop a pair when all entries in its list have a score below the minscore threshold. . index tuning for high-performance query processing pruning remains similar as for the unpruned, uncompressed term index. however, index tuning using log-based pruning results in much longer index lists than index tuning without log-based pruning. the longer lists in turn affect runtime (cf. table . ): opt. p@k �reads· �thot[ms] �tcold[ms] goal k l m train test train test train test train test efficiency- . . . . . . . . . oriented . . . . . . . . . index . . . . . . . . . quality . . . . . . . . . table . : query performance with log-based pruning (t= ) for absolute index quality. compared to the best results without log-based pruning, query processing takes an order of magnitude longer. the longer run times are due to the score-ordered part of the unpruned term lists as detailed in section . which may be processed to a large extent in the nra phase to preserve retrieval quality if all corresponding combined lists are missing. anyway, it is still faster than bmw with unpruned t(c) in the cold cache setting. we could not achieve the quality goal for the effectiveness-based methods as there were not enough combined lists left to boost quality enough; we did not evaluate performance for these settings. log-based pruning therefore mostly serves to reduce index size in situations with strong resource constraints where indexes need to be loaded from disk. here, it can still improve execution cost, while result quality stays comparable to a term-only index. . . summary of conclusions and limitations of the approach finding (l,m) parameters to build pruned gov indexes is reasonably fast and takes about five hours, while building a final full index is dependent on the resulting parame- ters and takes less than five hours for (l,m)=( , . ). already very short list prefixes of term and combined lists are sufficient to yield a result quality comparable to the one of unpruned term lists. this comes at the expense of more opened lists but saves on the number of read bytes and tuples, respectively. as shown for bmw, processing unpruned term indexes using dynamic pruning techniques is more expensive than pro- cessing pruned term and combined lists in an n-way merge join. p@k’ and ndcg@k’ values of pruned indexes tuned for k results do not degrade much for larger result set cardinalities k′. we show that, in the absence of relevance assessments, we can use the overlap between top-k results on pruned term and combined lists and the top-k results on unpruned lists as a substitute for the relevance assessments. the relative index quality approach ensures retrieval quality on test topics even without relevance assessments for the training topics – it works better for early p@k and ndcg@k, but does not degrade much for larger k. processing performance for training and test topics is excellent compared to the bmw algorithm. for a bigger query load, the , trec terabyte efficiency track queries from , our experiments show the viability of our approach at an lru cache size of mb: although the number of non-cached lists for our pruned index and the t(c)bm w index . experimental evaluation is comparable, our processing speed is and times faster for top- and top- retrieval, respectively, as the longer lists of the t(c)bm w index require more cache space. to achieve a similar cache ratio for the t(c)bm w index as for our pruned index, we would need to increase the lru cache size to gb, at a processing speed which is still times slower than for our approach. log-based pruning helps to get smaller resulting indexes at similar result quality at the expense of increased list lengths and an increased number of loaded lists which incurs increased running time during query processing. . . results with clueweb size[gb] p@k �reads· �bytes· �thot[ms] �tcold[ms] opt. goal k (l, m) est. real train test train test train test train test train test effect.-o. ( , . ) . . . - . . . . . . . . index qual. ( , . ) . . . - . . . . . . . . effic.-o. ( , . ) . . . . . . . . . . . . index qual. ( , . ) . . . - . . . . . . . . table . : clueweb : index tuning results for absolute index quality and evaluation of query performance, size limit set to s= tb. to demonstrate the scalability of our index tuning approach, we carried out experi- ments on the clueweb collection similar to the ones shown in section . . for gov . for all experiments we keep the index size limit of s= tb fixed which corresponds to about % of the size of the uncompressed spam-reduced english part of the clueweb collection (cf. section . . for details). we have published the corresponding results in [bs ]. again, we consider two baselines, the unpruned t(c) and i(c) indexes; however, as building the unpruned i(c) index exceeded our disk capacity, we had to limit each index list to the first million entries. we expect that this restriction will—if at all—have only a negligibly small influence on the result quality. the result quality of results created with these baselines was assessed using the available assessments for the training topics; here, p@ was . for t(c) and . for i(c), and p@ was . for t(c) and . for i(c). for the test topics, we submitted runs created for the baseline indexes to the trec web track, ad hoc task, which yielded a p@ of . for both t(c) and i(c) indexes, which was somehow unexpected (we had expected i(c) to yield a higher precision than t(c)). this may be partially caused by sparser relevance assessments for the web track topics, partially by giving a lower assessment priority to our two baseline runs compared to our third run (which was created with one of the pruned indexes). for p@ our expectations are met: i(c) yields a precision of . compared to t(c) which yields a precision of . . table . shows the results for absolute index quality tuning on the training topics for compressed clueweb indexes. with index parameters tuned for efficiency and top- document retrieval, the best index configuration turns out to be ( , . ) at . index tuning for high-performance query processing an index size of less than gb. processing training topics with this pruned index requires , reads on average per topic and takes less than ms for hot and ms for cold caches, providing a result quality comparable to t(c). processing test topics with the same index is even slightly faster due to shorter index lists ( , reads on average), reflected in improved hot cache times and cold cache times of about ms. the corresponding run has been submitted to the trec web track, ad hoc task as well, with a p@ of . , which is slightly higher than the p@ of t(c) and slightly higher than the p@ value for the training topics. as ndcg@k has not been used as retrieval quality metric in the trec web track, ad hoc task, we only report precision values. efficiency-oriented indexes for top- document retrieval require less than gb disk space and provide running times of less than ms for hot caches and around ms for cold caches on the training topics at a result quality comparable to the t(c) baseline run. query processing on the test topics is again faster, with ms on average with cold caches. our effectiveness-oriented index tuned for top- retrieval ( , . ) requires gb and provides a retrieval quality comparable to i(c). query execution takes about ms for the training topics and slightly more than ms for the test topics for hot caches. effectiveness-oriented indexes for top- retrieval require less than tb disk space and thus stay within our index size limit, providing again a result quality comparable to i(c). here, query execution takes about ms and ms for hot caches, whereas cold cache times range below ms and ms for training and test topics, respectively. the results show that the size estimator also works effectively on the clueweb collection with only minor overestimation. size[gb] �reads �bytes �thot �tcold opt. goal k (l, m) est. real overlap p@k · · [ms] [ms] effect.-o. ( , . ) . . . . . . . . index qual. ( , . ) . . . . . . . . effic.-o. ( , . ) . . . . . . . . index qual. ( , . ) . . . . . . . . table . : clueweb : index tuning results for relative index quality and evaluation of query performance, size limit set to s= tb. table . shows the results for relative index quality tuning on clueweb with the training topics. while the effectiveness-oriented approaches result in indexes which deliver result quality comparable to i(c) (at the price of longer lists compared to ab- solute index quality), result quality with the efficiency-oriented indexes falls shortly behind bm score quality, but the difference would still be tolerable in applications. we assume that this effect can at least partly be attributed to the fact that relevance assessments from trec are very sparse compared to those from earlier years; unassessed documents contribute to the overlap with the groundtruth, but do not in- crease precision values if they are in the result list of a query, even though a user may consider them relevant. although the indexed part of the clueweb collection is one order of magnitude . experimental evaluation larger in size than gov ( tb vs. gb uncompressed), the required index space does not grow as fast as the collection (e.g., index size grows from . gb to . gb for the efficiency setting ( , . ) on gov compared to ( , . ) on clueweb ). for absolute index quality tuning, the indexes tend to have shorter list lengths on clueweb such that query processing is often even faster on clueweb indexes. . . results with inex this part is based on our participation in inex [bs ] which describes our efforts that apply our tuning framework to the inex test bed for the efficiency track. we tune the index structures for different choices of result size k. to allow comparison as to retrieval quality with non-pruned index structures, we also depict our results from the ad hoc track. the scoring model we used in inex corresponds to the one we used in inex [bst ], this time retrieving article elements only. details about the scoring model can be found in section . . . ad hoc track for our contribution to the ad hoc track, we removed all tags from the xml documents in the official inex collection and worked on their textual content only. the last two runs have been submitted to inex , the first is the non-submitted baseline: • mpii-coarbm’: a content-only (co) run that considers the stemmed terms in the title of a topic (including the terms in phrases, but not their sequence) except terms in negations and stop words. we restrict the retrieval to the top-level article elements and compute the , articles with the highest scorebm value as described in our contribution to inex [bst ]. note that this approach corresponds to standard document-level retrieval. this run is the actual non- submitted baseline to enable a comparison to the submitted runs which all use proximity information. the corresponding run in section . . has been named topx-co-baseline-articleonly. • mpii-coarbp: a co run which aims to retrieve the , articles with the highest scorebm +scoreprox values, where scoreprox is calculated based on all possible stemmed term pairs in the title of a topic (including the terms in phrases, but not their sequence) except terms in negations and stop words. • mpii-coarbpp: a co run which is similar to mpii-coarbp but calculates the scoreprox part based on a selection of stemmed term pairs. stemmed term pairs are selected as follows: we consider all stemmed tokens in phrases that occur both in the phrasetitle and in the title and are no stop words. the modified phrases in the phrasetitle are considered one at a time to combine term pairs usable to calculate scoreprox. if the phrasetitle is empty, we use approach mpii-coarbp. the results in table . show that computing our proximity score with a subset of term pairs based on information taken from the phrasetitles (mpii-coarbpp) does not . index tuning for high-performance query processing run ip[ . ] ip[ . ] ip[ . ] ip[ . ] maip mpii-coarbm’ . . . . . mpii-coarbp . . ( ) . . . mpii-coarbpp . . ( ) . . . table . : results for the ad hoc track: interpolated precision at different recall levels (ranks for ip[ . ] are in parentheses) and mean average interpolated precision. improve the ip values compared to using all term pairs (mpii-coarbp). as expected, mpii-coarbp leads to a slight improvement over mpii-coarbm’. efficiency track in the following, we describe our effort in inex to tune our index structures for efficient query processing, taking into account the expected retrieval quality and index size. after that we briefly explain the approaches used by the other participants in the efficiency track and conclude with the results of the efficiency track. like for index tuning with the gov and clueweb collection, we aim to prune tls and cls after a fixed number of entries per list (plus an optional minimum score requirement for cls) and employ them as input to a merge join. to measure retrieval quality, one usually compares the retrieval results with a set of relevance assessments. as at the time of index tuning we did not have any relevance assessments and we aim at maximum query processing speed, we tuned for efficiency- oriented relative index quality. to this end, for each number of results k required by inex (k ∈{ , , }), we first built up a groundtruth as a substitute for relevance assessments. that groundtruth consists of the top-k results obtained through process- ing the i(c) index. note that this corresponds to the k highest scoring results of mpii-coarbp. we have found in section . . for the gov collection that it was reasonable to use an overlap of α= % between the top-k documents obtained by query processing on pruned tls and cls and the top-k documents of the groundtruth. this is enough to achieve the retrieval quality of t(c), i.e., bm retrieval quality. (note that the overlap is computed by the amount of overlapping documents and is not based on the number of characters returned.) the optimization process follows the description given in section . . . please note that for our submission to inex we used an early implementation of the tuning framework described in section . . which supported only uncompressed indexes: for all list lengths l ranging between and , (step size of ) and minimal score cutoffs between and (step size . ), we estimate the index size first by hashcode- based sampling % of all terms and term pairs. in our experiments, we restrict the processing of the query load to those indexes that meet the index size constraint set to s= gb. table . presents the tuning results based on type a queries with efficiency- . experimental evaluation k (l̄, m̄) overlap est. size[gb] nt(i) nc(i) st · nt(i)[mb] sc · nc(i)[gb] ( , . ) . . . · . · . ( , . ) . . . · . · . ( , . ) . . . · . · . table . : tuning results based on type a queries with efficiency-oriented relative index tuning, uncompressed indexes. oriented relative index tuning for the three result cardinalities k. the size of the access structure at · kt(i) + ac · kc(i) is estimated to . gb for all choices of k with kc(i) = . · and an average term pair length of . in the sample. run (l, m) �thot[ms] �tcold[ms] ip[ . ] ip[ . ] ip[ . ] ip[ . ] maip mpii-eff- ( , . ) . . . . . . . mpii-eff- ( , . ) . . . . . . . mpii-eff- ( , . ) . . . . . . . table . : efficiency track results, type a queries. table . shows the results of the tuned index structures for type a queries. for performance reasons, tuning was carried out using the type a queries only. to process type b queries, we used the same pruned indexes. mpii-eff-k depicts the optimal list lengths for different choices of k, the average cold and hot cache running times, and interpolated precision values at different recall levels. while measuring the cold cache running times, we have emptied the filesystem cache after each query execution, not just after each batch. to collect the hot cache running times, in a first round we fill the cache by processing the complete query load and measure the running times in the second round. the difference between the cold and hot cache running times can be considered as i/o time. queries are processed using the pruned index structures which run (l, m) �thot[ms] �tcold[ms] ip[ . ] ip[ . ] ip[ . ] ip[ . ] maip mpii-eff- ( , . ) . , . . . . . . mpii-eff- ( , . ) . , . . . . . . mpii-eff- ( , . ) , . , . . . . . . table . : efficiency track results, type b queries. have been reordered by docid to allow merge join query processing. the pruned index is created by hadoop and, in that early version, stored in a mapfile which is accessed by hadoop in a non-optimized way during query execution: hence, there is still room for performance improvements. these performance improvements have been realized in later implementations (see experiments with other test beds) by means of our own file-based inverted list implementation and access methods detailed in section . . it turns out that already very short list prefixes are sufficient to lead to a result quality comparable to mpii-coarbp at early recall levels (until ip[ . ]) and to mpii-coarbm’ at later recall levels. table . shows the results of the tuned index structures for type b queries. it is . index tuning for high-performance query processing clear that in our setting type b queries that consist of partly more than keywords cannot be executed as fast as type a queries. many thousands of possible pruned cls per query have to be fetched from hard disk before the evaluation can start. other participants in the following, we will describe the approaches pursued by the other participants in the efficiency track of inex . spirix: spirix [wk ] is a p p system which uses distributed search techniques for xml retrieval and splits collection, index, and search load over the p p network. the employed p p protocol is based on a distributed hash table (dht). the authors exploit xml structure to reduce the number of messages sent between peers. to compute the structural similarity with indexed articles for cas queries, the authors use four groups of functions, which are used in different combinations for ranking and routing. the authors have implemented adaptions of several scoring models, namely the bm , bm e, and tf · idf model. spirix has participated in the ad hoc and efficiency track where the precision values were competitive with centralized solutions. the authors claim that they can reduce the total amount of different structures to . there is no information about the number of structures in the full index such that the extent of the reduction remains unclear. the system significantly improves on early precision measures when it uses structural similarity. however an improvement from ip[ . ]= % to . % comes at the price of about times slower query processing. in contrast to the other participants in the efficiency track who aim at providing fast query execution times, the authors redefine efficiency as getting the p p system to scale, i.e., load balancing on large collections. mpii-topx : mpii-topx used in inex [tas ] is based on the earlier reim- plementation of topx for inex [tas ] and extends it by a new distributed xml indexing component. it supports a cas-specific distributed index structure with a par- allelization of all indexing steps. the overall time for indexing, which is done in a -pass process, amounts to hours on a single node system, and hours on a cluster with nodes. retrieval modes include the article mode (retrieves only article elements), co mode (retrieves any kind of elements), and cas mode (supports path queries with nexi or xpath . syntax). entire lists or their prefixes, respectively, can be cached; the decoded and decompressed data structures can be reused by mpii-topx . keys are tag-term pairs with a term propagation upwards in the xml tree. tf and ef values are computed for each tag-term pair. due to the large collection size, collection-wide statistics are approximated. the scoring model in use is an xml-specific extension to bm . the index uses an inverted block structure and compresses the blocks into a customized compact binary format. the otago system: the system developed at the university of otago [tjg ] uses a dictionary of terms organized in two levels: the first level stores the first four bytes and . experimental evaluation the length of every term string, and the position to retrieve the term block that belongs to the term prefix. terms with the same four bytes prefix are stored in the same term block which stores terms statistics: these include ctf and df values, the offset to locate the postings list, the length of the postings list, the uncompressed length of the postings list, and the position to locate the term suffix which is stored at the end of the block. at start-up, only the first level dictionary is loaded into memory. query processing allows to set two parameters, namely lower-k and upper-k. while lower-k specifies how many documents to return, upper-k specifies how many documents to read from each tf-sorted postings list. (if there are ties, the postings with the same tf-value as the kth posting are also evaluated.) when upper-k is specified, the complete postings list is decompressed, but only the documents with the highest tf-values are processed. this is similar to impact-layered indexes presented in section . . . each tf-layer stores the document ids in increasing order and compresses them by delta-encoding. postings are compressed by v-byte encoding. the authors employ a special version of the quick sort algorithm that partitions the accumulators by their score so that only the top-partition has to be sorted. the employed scoring model is a modified version of bm . only operating system caching is used with the disk cache flushed before each run. a memory layer of . gb is allocated with a usage of %. lower-k is chosen as , , and , as required by the efficiency track. each choice of lower-k is combined with upper-k set to , , , , , , , , , and , , which generates runs. the runs which yield the highest maip of % and %, respectively, set lower-k to , and use an upper-k of at least , . early precision (ip[ . ]) values are good unless upper-k is chosen small (i.e., too few entries per postings list have been read); peak values between % and % are achieved for upper-k choices of at least , . the average run time is split into i/o and cpu part. for type a topics, the i/o costs are more or less constant (between ms and ms on average per topic), whereas cpu costs increase with increasing upper-k (around ms for upper-k≤ , , up to about ms for upper-k= , , ). for type b topics, the i/o costs are again very similar, as for all choices of lower-k and upper-k the same number of postings is retrieved from disk, causing the same disk i/o (between ms and ms). the cpu costs are similar for upper-k values of at most (around ms) independent of the lower-k choice. due to the increased number of postings lists for type b topics, compared to type a topics, the cpu time increases way more (up to ms for upper-k= , , ). the best maip value of % is achieved for lower-k= , and upper-k= , . run time is dominated by the i/o costs. lower-k values above , lead to an increased run time to sort the top-partition of the accumulators. efficiency track results figures . and . describe the performance of the submitted runs in terms of efficiency and effectiveness (maip metrics) for type a and type b topics, respectively. figures . and . describe the performance of the submitted runs in terms of efficiency and effectiveness (ip[ . ] metrics) for type a and type b topics, respectively. . index tuning for high-performance query processing figure . : maip values: type a queries. figure . : maip values: type b queries. . hybrid index structure for efficient text retrieval figure . : ip values: type a queries. spirix is very slow because it uses a distributed p p search setting. the otago system is fastest for type b queries since it employs highly optimized c++ code using impact layered indexes with a modified version of bm scores. mpii-topx makes use of an inverted block structure and compresses the blocks into a customized compact binary format. our own runs labelled mpii-prox use merge joins with pruned indexes, tuned as described before. squares in the left rectangle depict our hot cache runs which represent the best case where every list comes from the cache, squares in the right rectangle show cold cache runs which represent the worst case where every list lookup causes i/o costs. our approach performs index pruning in a retrieval quality- aware manner to realize performance improvements and smaller indexes at the same time. our best tuned index structures provide the best cpu times for type a queries among all efficiency track participants while still providing at least bm retrieval quality. due to the number of query terms, type b queries which consist of partly more than keywords cannot be processed equally performant as type a queries: the number of pair lists to be fetched from harddisk for type b queries before they can be evaluated can easily be in the order of thousands. . hybrid index structure for efficient text retrieval this section is based on our work published in [bs ]. query processing with pre- computed term pair lists can improve efficiency for some queries, but suffers from the . index tuning for high-performance query processing figure . : ip values: type b queries. quadratic number of index lists that need to be read. here, we present a novel hybrid index structure that aims at decreasing the number of index lists retrieved at query processing time, trading off a reduced number of index lists for an increased number of bytes to read. . . introduction while precomputed indexes for term pairs can greatly improve performance for short queries, they are not that efficient for long queries or when lists are not available in a cache, but need to be read from disk. this disadvantage is rooted in the quadratic number of term pair lists that need to be accessed for every query. especially with the pruning methods proposed earlier in this chapter that store only a small number of entries per term pair list, query processing time is dominated by the time to locate and open index lists. reducing the number of index lists for processing a query can therefore significantly improve efficiency, even if more data must be read from each list. we base on and extend the index framework for tls and cls presented in section . . experimental results indicated that it is enough to heuristically keep only the best few thousand entries in each list to achieve good result quality. . hybrid index structure for efficient text retrieval . . hybrid index framework to accelerate query processing, especially for medium-sized queries, it is necessary to reduce the number of lists accessed by each query. for a query with terms, up to cls and tls need to be opened. the hybrid index framework that we have proposed in [bs ] can reduce this to at most lists in the best case, reducing the number of lists to open by %. we achieve this by combining the cl for a term pair (t , t ) with the tls for t and t , yielding an extended combined index list (clext) that now contains the best documents for both the term pair and the two single terms. we can expect that many documents will be included in two or three of the lists, so that the number of entries in the resulting clext will be less than the aggregated number of entries of the three source lists. within the clext, we store all entries in the same format, replacing unknown scores by , and sort all entries by their docid. ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) cl(bike, trails) as ce n d in g d o ci d tl(bike) tl(trails) clext(bike, trails) as ce n d in g d o ci d as ce n d in g d o ci d figure . : hybrid index clext. merge join top-k results (heap) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) ( , . , . , . ) as ce n d in g d o ci d figure . : merge join with hybrid in- dex clext for query {bike, trails, map}. figure . shows how to combine two tls and one cl into one clext and fig- ure . how a merge join works with the hybrid index clext. at query processing time, only clexts need to be read, reducing the number of index lists by n (for queries with n terms). for queries with terms, the number of lists is only compared to in the existing tl+cl approach. for queries with a larger number of terms, the technique is less effective since there is still a relatively large number of clexts to read, and information from one tl is now included in several clexts, so some of the information read during query processing is not needed. we will see later that the break-even point is around terms per query. note that tls . index tuning for high-performance query processing need to be kept in the index for queries that consist of just a single term. if we build a hybrid index as we just explained, the size of that index will be a lot larger than the size of the index with just tls and cls. while this comes as a surprise at first view, it has a simple explanation: many pairs of terms hardly occur together in the same document’s text window of size w= , so the corresponding cl is very short, but they frequently occur in isolation, so the (prefix of the) tl of each term in the index is long. the clext for such pairs is therefore orders of magnitude larger than the cl for the same pair. we can lower the required space for the hybrid index type size build time cl . gb < h tl . gb clext . tb h clextqlog . gb . h table . : index sizes and build times for full ( , . ) indexes. index by using additional information on how frequently pairs are used, for example from a query log. we then build clexts only for term pairs that are used frequently enough; for all other pairs we keep the old cl scheme. this drastically reduces the size of the hybrid index, while still providing reasonable performance improvements. with the trec gov collection, generating clexts only for term pairs that occur at least once in the aol query log reduced the on-disk size of the clexts from over tb to . gb; the on-disk size of all cls in the standard index was . gb. table . shows index sizes and build times for different index types. . . experimental evaluation for the experimental evaluation we have built full compressed indexes. we evaluated our proposed hybrid index with the gov collection, using the ad hoc topics from the trec – terabyte track, ad hoc tasks and the first , queries from the terabyte track, efficiency task (efftrack) [css ] as test beds. all tls and cls are pruned to at most entries, and entries in cls have an acc-score of at least . ; experiments in section . . have shown that this is enough to yield a similar quality for top- documents as produced by unpruned tls. we report average cold-cache runtimes (averaged over six independent runs) and access costs for top- retrieval with the original index (tl+cl) and the hybrid index with log-based pruning (tl+clextqlog); file-system caches were emptied before running each query, which is a very conservative setting. note that runtimes and cost are largely independent of the number of retrieved results. for the terabyte track, ad hoc tasks queries, using the hybrid index improved runtime from ms to ms per query over the original index; for the efftrack queries, the improvement was even better ( ms vs ms per query). this clearly shows that our hybrid index can greatly improve cold-cache performance. we will now evaluate the impact for queries of different length, and the influence of log-based pruning. . hybrid index structure for efficient text retrieval number of query terms figure . : average runtimes for terabyte and efftrack queries. figure . reports average query times for the two test beds, grouped by the number of terms per query. improvements are best for short queries, but we see im- provements up to terms. the chart also indicates the standard deviations which are pretty low. number of query terms figure . : average cost in bytes and average number of opened lists, for the efftrack queries. figure . details the average number of bytes read per query for the efftrack. the hybrid index reads up to twice as many bytes from disk, but is (as we saw before) still faster because it needs to open fewer lists (also depicted in this figure by triangles and diamonds). figure . shows the influence of log-based pruning on runtime. we computed, . index tuning for high-performance query processing figure . : effect of query term pair coverage in the aol query log on runtime, for the efftrack queries. for each efftrack query, the fraction of term pairs covered in the log, and grouped queries into five buckets from low coverage ( %- %) to high coverage ( %- %). our method gives benefit only for queries with a term pair coverage of at least %; however, these are the most frequent queries in this load (indicated by the black dots). for the remaining queries, our method does not create a performance penalty. . conclusion we clearly demonstrated that indexing terms and term pairs, together with tunable list pruning, is a viable method to improve either result quality or, providing a similar qual- ity as pure term indexes, processing performance. results with effectiveness-oriented in- dexes are comparable to the best results using unpruned indexes and efficiency-oriented index configurations yield almost one order of magnitude performance gain compared to a state-of-the-art top-k algorithm. we have demonstrated that our hybrid index structure significantly improves cold-cache query processing times of almost % on standard benchmark queries from trec terabyte and efficiency tracks by decreasing the number of fetched index lists, at the price of reading more from each list. the highest improvements are achieved for short queries. chapter conclusion and outlook . conclusion in the presence of growing data, the need for efficient query processing under result quality and index size control becomes more and more a challenge to search engines. this work has shown how to use proximity scores to make query processing effective and efficient with focus on either of the optimization goals. this thesis made the following important contributions: • we have presented a comprehensive comparative analysis of proximity score mod- els and a rigorous analysis of the potential of phrases and have adapted a leading proximity score model for xml data. • we have discussed the feasibility of all presented proximity score models for top- k query processing and have presented a novel index combining a content and proximity score that helps to accelerate top-k query processing and improves result quality. • we have presented a novel, distributed index tuning framework for term and term pair index lists that optimizes pruning parameters by means of well-defined optimization criteria under disk space constraints. indexes can be tuned with emphasis on efficiency or effectiveness: the resulting indexes yield fast processing at high result quality. • we have shown that pruned index lists processed with a merge join outperform top-k query processing with unpruned lists at a high result quality. • moreover, we have presented a hybrid index structure for improved cold cache run times. . outlook there are still some interesting remaining open challenges that deserve future attention. . conclusion and outlook as our index tuning framework only uses term and term pair lists (e.g., combined lists), a possible extension would be to precompute (selected) term n-tuple lists for n > . furthermore, extending index lists with more features could generate better re- trieval quality at lower query processing costs: some query-independent features like the pagerank score may be easily integrated into term indexes (cf. section . . ) whereas other features may pose real challenges for integration into the existing framework and ask for novel index structures. the evaluation and integration of further pruning methods such as the document- centric pruning by büttcher and clarke (see section . . for more details) into our index tuning framework may be worth investigation. possible improvements as to index construction, index tuning, and index mainte- nance are as follows: improving the construction of the final index by reducing the number of temporary index entries, and improving the estimation stage which cur- rently needs to parse the complete document collection would reduce the time required to build up an index and to find optimal pruning parameters. further consideration of the impact of pruned indexes on cache effectiveness and a careful index layout that groups frequently co-occurring lists close to each other will be a key extension for further improving processing time with cold caches. index maintenance such as supporting index updates would be especially beneficial for dynamic data such as email collections. so far the index has to be completely rebuilt and the optimization process is repeated completely if new documents are added to a collection. for dynamic data, it is required to develop means to incrementally add new documents and regularly optimize tuning parameters without the need to completely rebuild the index. finally, our hybrid index structure may be improved in the following ways: our hybrid index structure significantly improves cold-cache query processing times by de- creasing the number of fetched index lists, at the price of reading more from each list. as the highest performance improvements are achieved for short queries, future work may concentrate on improving performance for long queries, for example by precomputing lists for frequently used phrases or removing non-important pair lists. extending our index tuning framework to optimize pruning parameters for our hybrid index structure would certainly enrich our framework. appendix a retrieval quality and sensitivity a. retrieval quality and sensitivity . . . . . . . . . . . . - - + - - + all n d c g a t topic set web bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (a) web track (wt g): best ndcg@ values per scoring model . . . . . . . . . . - - + - - + all n d c g a t topic set web bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (b) web track (wt g): best ndcg@ values for per scoring model figure a. : web tracks test beds (wt g): best ndcg values . . . . . . . . . . . . . . - - + - - + all pr ec is io n at topic set web bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (a) web track (wt g): best p@ values per scoring model . . . . . . . . - - + - - + all pr ec is io n at topic set web bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (b) web track (wt g): best p@ values for per scoring model figure a. : web tracks (wt g): best precision values a. retrieval quality and sensitivity . . . . . . . . . - - + - - + all m a p topic set web bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat figure a. : web track (wt g): best map values for each scoring model . . . . . . . . . . . . - - - - - all n d c g a t topic set robust bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (a) robust track: best ndcg@ values for each scoring model . . . . . . . . . . . . - - - - - all n d c g a t topic set robust bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (b) robust track: best ndcg@ values for each scoring model figure a. : robust track: best ndcg values a. retrieval quality and sensitivity . . . . . . . . . . . . . - - - - - all pr ec is io n at topic set robust bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (a) robust track: best p@ values per scoring model . . . . . . . . . - - - - - all pr ec is io n at topic set robust bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (b) robust track: best p@ values per scoring model figure a. : robust track: best precision values . . . . . . . . . . - - - - - all m a p topic set robust bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat figure a. : robust track: best map values for each scoring model a. retrieval quality and sensitivity . . . . . . . . . . . . . . . . . . . . - - - all n d c g a t topic set terabyte bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai es song et al. de kretser,moffat (a) terabyte track: best ndcg@ values per scoring model . . . . . . . . . . . . . . . - - - all n d c g a t topic set terabyte bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai es song et al. de kretser,moffat (b) terabyte track: best ndcg@ values per scoring model figure a. : terabyte track: best ndcg values . . . . . . . . . . . . . . . . . . . . . - - - all pr ec is io n at topic set terabyte bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai es song et al. de kretser,moffat (a) terabyte track: best p@ values per scoring model . . . . . . . . . . . . . . . . - - - all pr ec is io n at topic set terabyte bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai es song et al. de kretser,moffat (b) terabyte track: best p@ values per scoring model figure a. : terabyte track: best precision values a. retrieval quality and sensitivity . . . . . . . . . . . . - - - all m a p topic set terabyte bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai es song et al. de kretser,moffat figure a. : terabyte track: best map values for each scoring model . . . . . . . . . . . . . . . . all n d c g a t topic set inex bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (a) inex: best ndcg@ values per scoring model . . . . . . . . . . . . . . all n d c g a t topic set inex bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (b) inex: best ndcg@ values per scoring model figure a. : inex: best ndcg values a. retrieval quality and sensitivity . . . . . . . . . . . . . . . . all pr ec is io n at topic set inex bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (a) inex: best p@ values per scoring model . . . . . . . . . . . all pr ec is io n at topic set inex bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat (b) inex: best p@ values per scoring model figure a. : inex: best precision values . . . . . . . . . . . . . all m a p topic set inex bm buettcher et al. rasolofo,savoy lm,dirichlet zhao,yun tao,zhai lv,zhai es song et al. de kretser,moffat figure a. : inex: best map values for each scoring model a. retrieval quality and sensitivity bm büttcher et al. rasolofo,savoy lm, dirichlet zhao,yun tao,zhai lv, zhai song et al. de kretser,moffat . . . . . . . . . . . . . sp re ad entropy (a) web: sensitivity of scoring models for map bm büttcher et al. rasolofo,savoy lm, dirichlet zhao,yun tao,zhai lv,zhai song et al. de kretser,moffat . . . . . . . . . . . . . . . . . sp re ad entropy (b) web: sensitivity of scoring models for ndcg@ figure a. : web: sensitivity of scoring models bm büttcher et al. rasolofo, savoy lm, dirichlet zhao, yun tao, zhai lv, zhai song et al. de kretser,moffat . . . . . . . . . . . . . sp re ad entropy (a) robust: sensitivity of scoring models for map bm büttcher et al. rasolofo, savoy lm, dirichlet zhao, yun tao, zhai lv, zhai song et al. de kretser,moffat . . . . . . . . . . . . . . . . . sp re ad entropy (b) robust: sensitivity of scoring models for ndcg@ figure a. : robust: sensitivity of scoring models a. retrieval quality and sensitivity bm büttcher et al. rasolofo, savoy lm, dirichlet zhao, yun tao, zhai song et al. de kretser,moffat . . . . . . . . . . . sp re ad entropy (a) terabyte: sensitivity of scoring models for map bm büttcher et al. rasolofo, savoy lm, dirichlet zhao, yun tao, zhai song et al. de kretser,moffat . . . . . . . . . . . . . . . . . . . sp re ad entropy (b) terabyte: sensitivity of scoring models for ndcg@ figure a. : terabyte: sensitivity of scoring models bm büttcher et al. rasolofo, savoy lm, dirichlet zhao, yun tao, zhai lv, zhai song et al. de kretser, moffat . . . . . . . . . . . sp re ad entropy (a) inex: sensitivity of scoring models for map bm büttcher et al. rasolofo, savoy lm, dirichlet zhao, yun tao, zhai lv, zhai song et al. de kretser, moffat . . . . . . . . . . . . sp re ad entropy (b) inex: sensitivity of scoring models for ndcg@ figure a. : inex: sensitivity of scoring models appendix b trec num: title num: title : u.s. oil industry history : hubble telescope repairs : pearl farming : church arson : u.s. against international criminal court : whales save endangered : green party political views : whistle blower department of defense : iraq foreign debt reduction : gastric bypass complications : controlling type ii diabetes : kurds history : aspirin cancer prevention : u.s. cheese production : decorative slate sources : airline overbooking : horse racing jockey weight : recycling successes : prostate cancer treatments : afghan women condition : train station security measures : location bse infections : pyramid scheme : enron california energy crisis : chesapeake bay maryland clean : anthrax hoaxes : license restrictions older drivers : habitat for humanity : schizophrenia drugs : regulate assisted living maryland : spammer arrest sue : artificial intelligence : gifted talented student programs : hedge funds fraud protection : controlling acid rain : freighter ship registration : cruise ship damage sea life : counterfeit id punishments : federal welfare reform : doomsday cults : census data applications : outsource job india : iran terrorism : library computer oversight : executive privilege : nuclear reactor types : iran contra : puerto rico state : low white blood cell count : john edwards womens issues table b. : trec terabyte track, ad hoc task topics. b. trec num: title num: title : scrabble players : magnet schools success : dam removal : hybrid alternative fuel cars : bullying prevention programs : golden ratio : domestic adoption laws : javelinas range and description : scottish highland games : arable land : volcanic activity : squirrel control and protections : murals : orange varieties seasons : embryonic stem cells : school mercury poisoning : civil war battle reenactments : mersenne primes : american muslim mosques schools : ivory-billed woodpecker : problems of hmong immigrants : yew trees : history of physicians in america : sunflower cultivation : hunting deaths : reverse mortgages : increase mass transit use : abandoned mine reclamation : ephedra ma huang deaths : women’s rights in saudi arabia : diamond smuggling : gullah geechee language culture : pharmacist license requirements : social security means test : women in state legislatures : bagpipe bands : kroll associates employees : pet therapy : kyrgyzstan-united states relations : notable cocker spaniels : deformed leopard frogs : blue grass music festival history : flag display rules : reintroduction of gray wolves : pennsylvania slot machine gambling : massachusetts textile mills : causes of homelessness : animals in alzheimer’s research : commercial candy makers : ovarian cancer treatment table b. : trec terabyte track, ad hoc task topics. num: title num: title : kudzu pueraria lobata : florida seminole indians : volcano eruptions global temperature : hidden markov modeling hmm : may day : secret shoppers : ban on human cloning : spanish civil war support : identity theft passport : model railroads : doctors without borders : dulles airport security : sugar tariff-rate quotas : labor union activity : north korean counterfeiting : iceland government : wetlands wastewater treatment : global positioning system earthquakes : timeshare resales : big dig pork : handwriting recognition : illegal immigrant wages : total knee replacement surgery : eskimo history : atlantic intracoastal waterway : urban suburban coyotes : johnstown flood : textile dyeing techniques : coast guard rescues : geysers : usaid assistance to galapagos : camel north america : sports stadium naming rights : david mccullough : chaco culture national park : pol pot : census : segmental duplications : imported fire ants : new jersey tomato : internet work-at-home scams : heredity and obesity : custer’s last stand : portugal world war ii : continuing care retirement communities : radio station call letters : civil air patrol : scalable vector graphics : national guard involvement in iraq : mississippi river flood table b. : trec terabyte track, ad hoc task topics. b. trec topic number: query topic number: query :obama family tree :lower heart rate :french lick resort and casino :starbucks :getting organized :inuyasha :toilet :ps games :mitchell college :diabetes education :kcs :atari :air travel information :website design hosting :appraisals :elliptical trainer :used car parts :cell phones :cheap internet :hoboken :gmat prep classes :gps :djs :pampered chef :map :dogs for adoption :dinosaurs :disneyland hotel :espn sports :michworks :arizona game and fish :orange county convention center :poker tournaments :the music man :wedding budget calculator :the secret garden :the current :map of the united states :defender :solar panels :volvo :alexian brothers hospital :rick warren :indexed annuity :yahoo :wilson antenna :diversity :flame designs :euclid :dog heat table b. : trec web track, ad hoc task topics. topic number: query topic number: query :horse hooves :raised gardens :avp :bobcat :discovery channel store :dieting :president of the united states :voyager :iron :keyboard reviews :uss yorktown charleston sc :afghanistan :ct jobs :joints :penguins :memory :how to build a fence :continental plates :bellevue :milwaukee journal sentinel :worm :bart sf :texas border patrol :who invented music :flushing :forearm pain :moths :ocd :korean language :mgb :income tax return online :er tv show :vldl levels :the wall :pvc :raffles :sewing instructions :titan :to be or not to be that is the question :earn money at home :living in india :rice :the sun :south africa :neil young :sat :kiwi :satellite :tornadoes :rincon puerto rico table b. : trec web track, ad hoc task topics ( indicates non-assessed topics). appendix c inex topic id title emperor ”napoleon i” polish ”genetic algorithm” olympian god or goddess italian flemish painting renaissance -french -german wifi security encryption user interface design usability guidelines software intellectual property patent license ”borussia dortmund” + european championship intercontinental cup ”cool jazz” ”west coast” musician george orwell life books essays eric arthur blair animal farm airbus a ordered algebraic vector space model generalized vector space model latent semantic indexing topic-based vector space model extended boolean model enhanced topic based salton smart ”web services” security standards fractal applications -art allergy treatments ”revision control system” theories studies genre classification structuralist plato forms aristotle forms wedding traditions and customs ”ken doherty” finals tournament novikov self-consistency principle and time travel global warming cause and effects recessive genes and hereditary disease or genetic disorder ”immanuel kant” ”moral philosophy” ”categorical imperative” food additive toxin carcinogen ”e number” spider hunting insect differents disciplines and movements for gymnastics sport tourism paris visit museum cathedral table c. : inex co topics with relevance assessments, ad hoc track , part c. inex topic id title the atlantic ocean islands and the slave trade ”northern lights” ”polar lights” ”aurora borealis” ”solar wind” ”magnetic field” earth paris transport ”gare de lyon” ”gare du nord” buildings designed antoni gaudi barcelona architect castles kasteel in the netherlands founder ikea composition of planet rings ”cirque du soleil” shows scotland tourism cloning animals accepted ”united states of america” nba european basketball player ”national dress” +scottish ”nobel prize” laureate physics dutch netherlands figure tulips ncaa basketball tournament ”march madness” steve wozniak steve jobs ”silk road” china prepare acorn eat species of monotreme security algorithms in computer networks high blood pressure effect toy story reinforcement learning + q-learning microkernel operating systems ”birthday party” ”nick cave” fantasy novel goodkind book xml database sex pistols concert audience manchester music scene +unrealscript language api tutorial +”state machine” figure moore mealy drinking water abstraction +germany proprietary implementation +protocol +wireless +security animal flight ”chinese wedding” custom tradition faster-than-light travel pseudocode for in-place sorting algorithm novel adaptations for science fiction films +”best actress” +”academy award” -supporting -nominated winner film use of natural language processing in information retrieval babylonia babylonian assyriology ontologies information retrieval semantic indexing solar energy for domestic electricity and heating ”europe after the second world war” + democracy effect nuclear power plant accident table c. : inex co topics with relevance assessments, ad hoc track , part topic id title bob dylan eric clapton +mushroom poisonous poisoning economy peru international investment tourism fourier transform applications hymenoptera +apocrita -symphyta +reproduction queen bees wasps hornets pillars of hercules + mythology escaped convict ”william buckley” purpose of voodoo rituals. australia’s involvement in echelon spy network aid following the tsunami. states countries nuclear proliferation nonproliferation treaty npt ”diabetes mellitus” ”type ” symptoms +rules ”team sports” +indoor +ball world -football -basketball -handball - voleyball ”helms-burton law” ”united states” embargo against cuba consequences econ- omy symptoms: headache, fatigue, nausea ubiquitous computing and application ”greek mythology” aphrodite informations about the city of lyon in france politics political albert einstein arnold schwarzenegger stars cast fencing +weapon bridge types rhinoplasty insomnia ”what are the causes” +sleep cricket ”how to play” australian aboriginals ”stolen generation” september ”conspiracy theories” ”mobile phone” country umts ”non violent” revolution country movie award ”eddie murphy” ”jim carrey” ”robin williams” country european capital color television analog standard description french france singer ”the old man and the sea” book architecture ”football world cup” +”miracle of bern” hybrid vehicles -biology ”fuel efficiency” ”fuel sources” model engine routers and switches +computer -travel -light network types history +gsm, +cdma, system,standard,clear battery coverage roaming price. coordinates and population of capital cities of europe table c. : inex co topics with relevance assessments, ad hoc track , part c. inex topic id title topic id title meaning of life webster’s dictionary dance style tata motors company in india th century imperialism law legislation act +nuclear -family greek revolution mechanism raid storage dna testing -forensic -maternity - paternity nikola tesla inventions patents pollen allergy rotary engines in cars keyboard instrument -electronic wireless network security spanish classical +guitar players +egypt museum pyramid +amsterdam picture image +acne treatment side effects vegetarian person -she -woman ”open source” information retrieval systems electromagnetic waves ”bayes filter” +application vodka producing countries mba school in canada portuguese typical dishes science fiction film algerian war vauban virginia woolf novels linux operating system discovery ”by chance” serendipity image file formats introduced animals java programming language guitar tapping museum picasso france aircraft formation social networks mining genetically modified food safety wikipedia vandalism childbirth tradition virtual museums diet descriptions records management” +metadata - system ”european basketball players” +nba time travel theories wine tasting flower meaning famous bouddhist places ale +”international brigades” spanish civil war bilingualism children ”language ac- quisition” ”magnetic levitation” technology scrabble game rules autistic spectrum disorder technological singularity concept and implications berbers of north africa party primaries in the united states car company wine regions in europe jennifer lopez codebreaking at bletchley park expert on database coin collecting mahler symphony song intrusion detection japanese culture food environmental impacts of earth- quakes townships of michigan terracotta figures +horse table c. : assessed inex co topics, ad hoc track topic id title phrasetitle nobel prize ”nobel prize” best movie ”best movie” yoga exercise ”yoga exercise” mean average precision reciprocal rank references precision recall pro- ceedings journal ”mean average precision” ”reciprocal rank” ”precision recall” ”recall preci- sion” chemists physicists scientists al- chemists periodic table elements ”periodic table” opera singer italian spanish -soprano ”opera singer” financial and social man made catas- trophes adversity misfortune -”natural disaster” -”natural disaster” ”financial misfor- tune” financial disaster” ”financial catastrophe” ”financial adversity” ”so- cial disaster” ”social catastrophe” israeli director actor actress film festi- val ”israeli director” ”israeli actor” ”israeli actress” ”film festival” election +victory australian labor party state council -federal ”election victory” ”state election” ”council election” ”australian labor party” applications bayesian networks bioin- formatics ”bayesian networks” olive oil health benefit ”olive oil” ”health benefit” vitiligo pigment disorder cause treat- ment ”treatment of vitiligo”, ”cause of ”vi- tiligo” ”pigment disorder” native american indian wars against colonial americans ”native american” ”american indian” ”wars against colonial americans” content based image retrieval ”content based” ”image retrieval” ”con- tent based image retrieval” voice over ip none cycle road skill race ”road bike” ”road race” rent buy home none dwyane wade ”dwyane wade” latent semantic indexing ”latent semantic indexing” ibm computer ”ibm computer” wonder girls ”wonder girls” szechwan dish food cuisine ”szechwan dish” ”szechwan food” ”szechwan cuisine” ”plays of shakespeare”+macbeth ”plays of shakespeare” cloud computing ”cloud computing” scenic spot in beijing ”scenic spot” generalife gardens none zhang yimou ”zhang yimou” fastest speed bike scooter car motor- cycle none personality type career famous ”personality type” popular dog cartoon character ”cartoon character” table c. : inex - type a queries, part c. inex topic id title phrasetitle sabre none evidence theory dempster schafer ”evidence theory” ”dempster schafer” al-andalus taifa kingdoms ”taifa kingdoms” the evolution of the moon none bermuda triangle ”bermuda triangle” notting hill film actors ”notting hill” ”film actors” movies directed tarantino ”tarantino movie” french colony africa independence ”french colony” roman architecture ”roman architecture” steam engine ”steam engine” the scythians ”the scythians” sun java ”sun java” nasa missions ”nasa missions” opengl shading language glsl ”opengl shading language” new age musician ”new age” penrose tiles tiling theory ”penrose tiles” ”tiling theory” ”kali’s child” criticisms reviews psy- choanalysis of ramakrishna’s mysti- cism ”kali’s child” ”psychoanalysis of ra- makrishna’s mysticism” biometric technique ”biometric technique” chicago symphony orchestra ”chicago symphony orchestra” valentine’s day ”valentine’s day” rabindranath tagore bengali litera- ture ”rabindranath tagore” ”bengali liter- ature” newspaper spain headquarter madrid none finland car industry manufacturer saab sisu ”car industry” ”car manufacturer” tampere region tourist attractions ”tampere region” ”tourist attraction” european union expansion ”european union” higher education around the world ”higher education” movie slumdog millionaire directed by danny boyle ”slumdog millionaire” ”danny boyle” tiananmen square protest ”tiananmen square” ”protest ” failure tolerance in distributed sys- tems ”failure tolerance” ”distributed sys- tems” hard disk technology ”hard disk” table c. : inex - type a queries, part topic id title phrasetitle france second world war normandy ”second world war” social network group selection ”group selection in social network” ”so- cial network” ”group selection” d-day normandy invasion ”normandy invasion” stock exhange insider trading crime ”stock exhange” ”insider trading” sunflowers vincent van gogh ”vincent van gogh” folk metal groups finland ”folk metal” probabilistic models in information re- trieval ”probabilistic models” ”information re- trieval” china great wall ”great wall” singer in britain’s got talent ”britain’s got talent” health care reform plan ”health care reform” ”health care plan” earthquake prediction ”earthquake prediction” +professor ”information retrieval” ”computer science” ”information retrieval” ”computer sci- ence” web link network analysis ”web link analysis” ”link analysis” ”network analysis” web ranking scoring algorithm ”web ranking” ”scoring algorithm” tourism in tunisia none sociology and social issues and aspects in science fiction ”social aspects” ”social issues” ”science fiction” torrent client technology ”torrent technology” supervised machine learning algo- rithm ”supervised machine learning algo- rithm” ”machine learning” dangerous paraben bisphenol-a none international game show formats ”game show” ”show formats” maya calendar ”maya calendar” south african nature reserve ”south african” ”nature reserve” therapeutic food ”therapeutic food” food allergy ”food allergy” operating system +mutual +exclusion ”operating system” +”mutual exclu- sion” airbus a none history bordeaux none ”hatha yoga” deity asana ”hatha yoga” world wide web history ”world wide web” telephone history none table c. : inex - type a queries, part c. inex topic id title phrasetitle himalaya trekking peak none ski +waxing -water -wave ”ski waxing” french revolution ”french revolution” global warming human activity ”global warming” ”human activity” weka software none eiffel none location marcel duchamp work ”marcel duchamp” pandemic death none movie houdini none search algorithm with plural keywords ”search algorithm” ”plural keywords” alchemy in asia including japan china and india ”alchemy in asia” historical ninja stars ”ninja stars” photograph world earliest ”earliest photograph” lunar mare formation mechanism ”lunar mare” ”formation mechanism” musicians jazz ”jazz musicians” +”amy macdonald” +love +song ”amy macdonald” ”love song” design science sustainability renew- able energy synergy ”design science” ”design science sus- tainability” ”renewable energy” sustainability indicators metrics ”sustainability indicator” ”sustainabil- ity metric” circus acts skills ”circus act” ”circus skills” paul is dead hoax theory +”paul is dead” europe solar power facility ”solar power” ”facility in europe” rally car female or woman driver ”rally car” ”female driver” ”woman driver” toy story buzz lightyear d render- ing computer generated imagery ”toy story” ”buzz lightyear” ” d rendering” ”computer generated im- agery” self-portrait ”self portrait” virtual museums ”virtual museum” table c. : inex - type a queries, part list of figures . non-relevant document for query surface area of a triangular pyramid. . . a poem with position information. . . . . . . . . . . . . . . . . . . . . . . plots according to formulas in [dkm ]. . . . . . . . . . . . . . . . . . . . arc and circle replaced to fit the plots in [dkm , dkm ]. . . . . . . . . example: triangle-shaped contribution function. . . . . . . . . . . . . . . example: aggregated score scorex. . . . . . . . . . . . . . . . . . . . . . . example: highest aggregated score scorex located at a non-query term location. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . detectespans pseudocode. . . . . . . . . . . . . . . . . . . . . . . . . . . . three variants of the mrf model for our running example query, i.e., sq=(sea,shell,song). we depict (left) the full indepence (fi) variant, (middle) the sequential dependence (sd) variant, (right) the full depen- dence (fd) variant. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . an xml document and its linearization. . . . . . . . . . . . . . . . . . . . example: illustration for metric p[#characters]. . . . . . . . . . . . . . . . comparison of the three runs: p[# characters] values. . . . . . . . . . . . score-ordered term, proximity, and combined index lists which can be used to process the query {bike, trails} in several processing strategies. . tl+cl approaches: cost. . . . . . . . . . . . . . . . . . . . . . . . . . . . tl+cl approaches: p@ . . . . . . . . . . . . . . . . . . . . . . . . . . . tl+cl(� varied): cost. . . . . . . . . . . . . . . . . . . . . . . . . . . . . tl+cl(� varied): p@ . . . . . . . . . . . . . . . . . . . . . . . . . . . . example: query={bike, trails, map}, merge join with processing strategy tl+cl using pruned term lists and combined lists. . . . . . . . . . . . . index and data files for tls. . . . . . . . . . . . . . . . . . . . . . . . . . compressed tls in docid-order. . . . . . . . . . . . . . . . . . . . . . . . . compressed cls in docid-order. . . . . . . . . . . . . . . . . . . . . . . . list of figures . relative index size with varying list length and minscore cutoffs. . . . . . effect of log-based pruning on query performance (on training topics). . . p@k and ndcg@k on test topics for effectiveness- and efficiency- oriented absolute index quality without index compression. . . . . . . . . p@k and ndcg@k on test topics for effectiveness-oriented absolute in- dex quality with index compression. . . . . . . . . . . . . . . . . . . . . . p@k and ndcg@k on test topics for efficiency-oriented absolute index quality with index compression. . . . . . . . . . . . . . . . . . . . . . . . . p@k and ndcg@k on test topics for effectiveness- and efficiency- oriented relative index quality without index compression. . . . . . . . . . p@k and ndcg@k on test topics for effectiveness-oriented relative index quality with index compression. . . . . . . . . . . . . . . . . . . . . . . . . p@k and ndcg@k on test topics for efficiency-oriented relative index quality with index compression. . . . . . . . . . . . . . . . . . . . . . . . . efficiency track: real system performance for a ( , . ) full index for various query and lru cache sizes. . . . . . . . . . . . . . . . . . . . . . . maip values: type a queries. . . . . . . . . . . . . . . . . . . . . . . . . . maip values: type b queries. . . . . . . . . . . . . . . . . . . . . . . . . . ip values: type a queries. . . . . . . . . . . . . . . . . . . . . . . . . . . . ip values: type b queries. . . . . . . . . . . . . . . . . . . . . . . . . . . . hybrid index clext. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . merge join with hybrid index clext for query {bike, trails, map}. . . . . average runtimes for terabyte and efftrack queries. . . . . . . . . . . . . average cost in bytes and average number of opened lists, for the eff- track queries. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . effect of query term pair coverage in the aol query log on runtime, for the efftrack queries. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . a. web tracks test beds (wt g): best ndcg values . . . . . . . . . . . . a. web tracks (wt g): best precision values . . . . . . . . . . . . . . . . a. web track (wt g): best map values for each scoring model . . . . . a. robust track: best ndcg values . . . . . . . . . . . . . . . . . . . . . . a. robust track: best precision values . . . . . . . . . . . . . . . . . . . . . a. robust track: best map values for each scoring model . . . . . . . . . a. terabyte track: best ndcg values . . . . . . . . . . . . . . . . . . . . . a. terabyte track: best precision values . . . . . . . . . . . . . . . . . . . . a. terabyte track: best map values for each scoring model . . . . . . . . a. inex: best ndcg values . . . . . . . . . . . . . . . . . . . . . . . . . . list of figures a. inex: best precision values . . . . . . . . . . . . . . . . . . . . . . . . . a. inex: best map values for each scoring model . . . . . . . . . . . . . . a. web: sensitivity of scoring models . . . . . . . . . . . . . . . . . . . . . a. robust: sensitivity of scoring models . . . . . . . . . . . . . . . . . . . a. terabyte: sensitivity of scoring models . . . . . . . . . . . . . . . . . a. inex: sensitivity of scoring models . . . . . . . . . . . . . . . . . . . . . list of tables . overview: bm variations. . . . . . . . . . . . . . . . . . . . . . . . . . . espan goodness features. . . . . . . . . . . . . . . . . . . . . . . . . . . . . model feature sets. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . overview: features used in each scoring model. additional remarks: needs also the number of documents n in the collection, requires ctf and tf if jelinek-mercer or dirichlet prior smoothing are used, deter- mines the set of features dependent on the employed setting (e.g., df and tf for unigrams/bigrams, respectively plus lists of important phrases, etc.), may use tf values not only for terms but also for n-grams and unordered occurrences of n-gram terms, and ’s set of features may differ dependent on the learned proximity score. . . . . . . . . . . . . . . . . . . some trec test beds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . bm : optimal tuning parameter setting with ndcg@ and map values. . büttcher et al.’s scoring model: optimal tuning parameter setting with ndcg@ and map values. . . . . . . . . . . . . . . . . . . . . . . . . . rasolofo and savoy’s scoring model: optimal tuning parameter setting with ndcg@ and map values. . . . . . . . . . . . . . . . . . . . . . . language model with dirichlet smoothing: optimal tuning parameter setting with ndcg@ and map values. . . . . . . . . . . . . . . . . . . zhao and yun’s scoring model: optimal tuning parameter setting with ndcg@ and map values. . . . . . . . . . . . . . . . . . . . . . . . . . tao and zhai’s scoring model: optimal tuning parameter setting with ndcg@ and map values. . . . . . . . . . . . . . . . . . . . . . . . . . song et al.’s scoring model: optimal tuning parameter setting with ndcg@ and map values. . . . . . . . . . . . . . . . . . . . . . . . . . de kretser and moffat’s scoring model: optimal tuning parameter setting with ndcg@ and map values. . . . . . . . . . . . . . . . . . . . . . . intercollection generalization results for various scoring models. . . . . . list of tables . results for document-level retrieval with stopword removal. . . . . . . . . results for document-level retrieval without stopword removal. . . . . . . results for element-level retrieval with stopword removal. . . . . . . . . . results for element-level retrieval without stopword removal. . . . . . . . results: focused task inex , stopword removal, no stemming. . . . boosting weights bm f. . . . . . . . . . . . . . . . . . . . . . . . . . . . p@ for user-identified phrases. . . . . . . . . . . . . . . . . . . . . . . . p@ for different configurations and query loads, first part. . . . . . . . . p@ for different configurations and query loads, second part. . . . . . . experimental results for top- retrieval of ad hoc topics from the and trec terabyte track, ad hoc tasks. . . . . . . . . . . . index sizes in items and required space for unpruned indexes. . . . . . . . index sizes (million items) with different length limits, with and without minimum acc-score requirement. . . . . . . . . . . . . . . . . . . . . . . . index sizes (disk space) with different length limits, with and without minimum acc-score requirement. . . . . . . . . . . . . . . . . . . . . . . . experimental results for top- retrieval with pruned lists. . . . . . . . . . retrieval quality for top- and top- retrieval with pruned lists. . . . . retrieval quality for top- retrieval with pruned tl+ctl and tl+cl settings. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . experimental results for top- retrieval with unpruned and pruned lists. . costs for top- retrieval with unpruned and pruned lists. . . . . . . . . comparison: topx with unpruned lists vs merge join on pruned lists. . . gov : index tuning results for absolute index quality without index compression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . gov : index tuning results for absolute index quality with index com- pression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . relative result quality for different values of α. . . . . . . . . . . . . . . . gov : index tuning results for relative index quality without index compression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . gov : index tuning results for relative index quality with index com- pression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . gov : query performance for absolute index quality without index com- pression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . gov : query performance for relative index quality without index com- pression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . list of tables . gov : query performance for absolute index quality with index com- pression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . gov : query performance for relative index quality with index com- pression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . efficiency track: real system performance, merge join, various lru cache sizes with a ( , . ) full index. . . . . . . . . . . . . . . . . . . . . efficiency track: real system performance, bmw, various lru cache sizes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . index tuning results with log-based pruning (t= ) for absolute index quality. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . query performance with log-based pruning (t= ) for absolute index quality. . clueweb : index tuning results for absolute index quality and evalua- tion of query performance, size limit set to s= tb. . . . . . . . . . . . . clueweb : index tuning results for relative index quality and evaluation of query performance, size limit set to s= tb. . . . . . . . . . . . . . . . results for the ad hoc track: interpolated precision at different recall levels (ranks for ip[ . ] are in parentheses) and mean average interpo- lated precision. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . tuning results based on type a queries with efficiency-oriented relative index tuning, uncompressed indexes. . . . . . . . . . . . . . . . . . . . . . efficiency track results, type a queries. . . . . . . . . . . . . . . . . . . . efficiency track results, type b queries. . . . . . . . . . . . . . . . . . . . index sizes and build times for full ( , . ) indexes. . . . . . . . . . . b. trec terabyte track, ad hoc task topics. . . . . . . . . . . . . . b. trec terabyte track, ad hoc task topics. . . . . . . . . . . . . . b. trec terabyte track, ad hoc task topics. . . . . . . . . . . . . . b. trec web track, ad hoc task topics. . . . . . . . . . . . . . . . b. trec web track, ad hoc task topics ( indicates non-assessed topics). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . c. inex co topics with relevance assessments, ad hoc track , part c. 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[aas+ ], pages – . home-based care for people with alzheimer’s disease and related dementias (adrd) during covid- pandemic: from challenges to solutions international journal of environmental research and public health commentary home-based care for people with alzheimer’s disease and related dementias (adrd) during covid- pandemic: from challenges to solutions atiqur sm-rahman ,* , chih hung lo , azra ramic and yasmin jahan department of culture and society, division ageing and social change, linkoping university, norrkoping, sweden department of neurology, brigham and women’s hospital, harvard medical school, boston, ma , usa; chihhunglo @gmail.com stroke unit, clinical medicine, vrinnevi hospital, norrköping-region Östergötland, norrköping, sweden; ramic_azra@hotmail.com graduate school of biomedical and health sciences, hiroshima university, hiroshima - , japan; dr.yasminjahan@gmail.com * correspondence: atiqur.rahman@liu.se received: november ; accepted: december ; published: december ����������������� abstract: there has been supporting evidence that older adults with underlying health conditions form the majority of the fatal cases in the current novel coronavirus disease (covid- ) pandemic. while the impact of covid- is affecting the general public, it is clear that these distressful experiences will be magnified in older adults, particularly people living with alzheimer’s disease and related dementia (adrd), making them the most vulnerable group during this time. people with differing degrees of adrd are especially susceptible to the virus, not only because of their difficulties in assessing the threat or remembering the safety measures, but also because of the likelihood to be subject to other risk factors, such as lack of proper care and psychological issues. therefore, in this article, we will discuss the challenges related to home-based care for people with adrd during a pandemic and propose a formulation of systematic solutions to address these challenges and to alleviate the social and economic impact resulting from the crisis. keywords: dementia; adrd; covid- ; pandemic; home-based care; policy . background the world is currently grappling with a rapid evolving pandemic of the novel coronavirus disease (covid- ). older adults aged and above have been defined as a higher risk group of the virus in scientific publications as well as in media coverage [ , ]. this group of people, therefore, has become the subject of specific national social distancing and ‘cocooning’ measures [ ]. these measures and implications are difficult to be handled by older adults, in particular, individuals with alzheimer’s disease and related dementias (adrd), due to implications from disease symptoms and the need for additional care [ ]. it is unclear from existing discussions how the covid- pandemic is affecting people with adrd as a whole, even though they respond to the crisis differently based on their stages in disease progression [ , ]. there is a lack of study showing a direct association between the suspected, infected, or fatal cases of covid- and people with adrd thus far. more importantly, how exactly people with adrd are responding to the pandemic situation remains unknown. a further complication to this is that there is no specific policy or planning from any country on how to deal with people with adrd who are suffering from covid- [ , ]. this is an alarming oversight which is not explicitly addressed by the world health organization [ ] and appeared as a cornerstone int. j. environ. res. public health , , ; doi: . /ijerph www.mdpi.com/journal/ijerph http://www.mdpi.com/journal/ijerph http://www.mdpi.com https://orcid.org/ - - - https://orcid.org/ - - - http://www.mdpi.com/ - / / / ?type=check_update&version= http://dx.doi.org/ . /ijerph http://www.mdpi.com/journal/ijerph int. j. environ. res. public health , , of that has received negligible attention in the new policy announced by the united nations [ ]. hence, without delineating an accurate number of covid- positive people with adrd from the general reported cases [ ], there is a high possibility of overlooking the actual home-based care needs for the people with adrd and this could affect the timely development of suitable policies for this group of people [ ]. . covid- and people with adrd adrd, resulting from neurodegeneration, becomes more common with age [ – ] and predominantly affects older adults, particularly from middle age ( s, s and early s) onwards [ ]. globally, there is an estimate of million people living with dementias [ ] and in people over the age of and in people over the age of are diagnosed with adrd [ ]. many of them may not be in regular contact with the health and social care system and may not even have sufficient information about covid- . according to the centers for disease control and prevention (cdc), older adults aged and above have been uniformly defined as a ‘higher risk group’ with regards to the virus [ , ], regardless of their associated health comorbidities. people with adrd are described as not only susceptible to developing severe covid- symptoms but are also less responsive to treatments due to other existing health conditions [ – ]. prominent clinical features of covid- , such as hypoxia or respiratory distress, cause delirium [ , ] and sudden cardiac arrest, which could create complications for covid- treatment for people with adrd [ ]. in particular, the higher risk of delirium with covid- could be misdiagnosed as a form of dementia and therefore affect immediate treatment [ , ]. furthermore, memory problems at late-stage adrd, which, for example, make safety instructions difficult to remember [ , ] and also make clearly understanding the messages of cocooning and self-isolation difficult [ , ], are deteriorating the capabilities of this group of people to combat the pandemic. the pathophysiological processes of adrd do not increase the risk of covid- ; however, they may be subject to other risk factors such as anxiety, trauma, loneliness, existential uncertainty, and social isolation [ ]. the dynamic nature of covid- corresponds with the severe acute respiratory syndrome (sars- ), which strongly highlights the urgent need to develop suitable policies for older adults and adrd care. retrospective studies, for instance, found that rates of suicidal tendencies among older adults aged and above were higher during the sars- epidemic [ – ]. the study further identified predominant reasons explaining this exceptional increase of suicide deaths among older adults, which include anxiety in contracting the disease, fear of disconnection, stress over being a burden to their families, and social disengagement. the combination of these reasons was described as a “serious public health concern” [ ] that must be addressed immediately to minimize the adverse impact of the pandemic on people with adrd. a better understanding and appreciation of the impact of this rapidly evolving situation can help in the improvement of care for people with adrd [ ]. besides, the documentation of measures taken by institutions (structural) and individuals (personal) to manage the effect of covid- will facilitate future strategies on disease prevention for people with adrd [ ]. evidence shows that more than % of older adults living in long-term facilities (home- and community- based care) are affected disproportionately by covid- [ ]. currently available literature also demonstrates that most of the people with adrd living with family members prefer home-based care to nursing home [ ]. this choice depends heavily on family caregivers as indispensable partners in dementia home care [ ]. home dwelling people with adrd are experiencing challenges related to inadequate preventive measures and essential health services during the covid- surge [ ]. while emergency planning on acute care for people with adrd living in nursing home (e.g., long-term care) was taken into consideration at the beginning of covid- and has been addressed over time [ , ], it should be noted with concern that, to-date, very few existing preventive measures have targeted people with adrd living at home with a personal caregiver (e.g., family member) or living alone by themselves [ ]. int. j. environ. res. public health , , of this article advocates for a formulation of solutions to address the challenges related to home-based care for people with moderate to severe adrd under pandemic situations such as covid- . we offer suggestions in order to frame an action plan in the field of adrd home-based care to determine and discuss what the deciding factors are, so that people with adrd can be protected more effectively. the goal is to propose corresponding recommendations to mitigate the challenges related to pandemic situations in a timely manner, which can further influence the decisions of caregivers, health professionals, and policymakers. . challenges in home-based care for people with adrd people with adrd utilize various resources from different settings depending on their severity of illness [ ]. they are among the most vulnerable groups in society due to the deterioration of physical and cognitive functionalities that often leads toward a high dependency on others [ ]. a study has argued that the current pandemic has heightened the morbidity and mortality among people with adrd and put restrictions on the social support and the health care system on which they depend [ ]. covid- thus generates additional care needs from both home-based care (providing low-intensity care, with few trained staff) and nursing home care (providing high-intensity care with trained nursing and medical staff) services [ – ]. despite the available and accessible resources in long-term care or nursing home facilities, about one-third of people with moderate to severe adrd live with family and on their own [ ]. the pandemic generally disrupted or delayed delivering services such as meals on wheels for them due to increased demand [ ], workers’ illness [ ], or required isolation due to exposure [ ]. moreover, people with adrd living at home had to discontinue their purposeful socio-cultural activities such as social engagement, group exercise, music therapy, and pet therapy because of prolonged physical distancing [ , ]. to stay socially connected, people are turning to technology, which can also be difficult to adopt for individuals with adrd due to cognitive impairment [ , ]. these needs are less visible but no less important. similarly, the primary caregivers of people with adrd are facing additional difficulties while following the new rules of social distancing and cocooning. the pandemic has made some of them mentally and physically precarious [ , ]. they may become ill, isolated, or unavailable. in the sudden unavailability of caregivers, relatives or friends may have to be responsible for taking care of a person with adrd, which is incompatible with physical distancing. preventive measures like social distancing, physical distancing, and the restriction of visitors at home and in nursing cares, as well as home quarantine adopted by several countries worldwide, have been particularly challenging for people with adrd [ ]. for instance, it is not easy for people with late-stage adrd to understand instructions about social distancing (e.g., staying “ meters or feet apart” from others) and abide by the rules. the ‘forgetful’ characteristics might hinder them from remembering to wear face masks, wash their hands frequently, or take other recommended preventive measures [ ]. the limited access to information poses additional difficulties to the group to change or reconfigure personal and social expectations. simultaneously, it is important to pay attention to how the lack of these preventive measures could impact the dynamic interactions between people with adrd and their caregivers, leading to both having a higher chance of infection [ ]. therefore, we need to continuously reinforce basic health care messages in order to prevent or reduce the harm of the covid- pandemic for both groups. we classified the challenges and the possible solutions into two interconnected levels—structural level and personal level (figure )—which may derive from the covid- pandemic for people with adrd. the structural challenges mostly illustrate policy and care infrastructure constraints, whereas the personal level explored the requirements for people with adrd in a home-based care setting. lessons learned from the previous epidemic crisis may enlighten our understanding of the best effective measures. int. j. environ. res. public health , , of int. j. environ. res. public health , , x for peer review of figure . challenges related to alzheimer’s disease and related dementia (adrd) in a pandemic and proposed solutions. during a pandemic, the virus is not only threatening people with adrd, but also their family members and friends, who are the main sources of home-based care in contexts where there is a lack of adequate health care systems. a significant proportion of people with adrd has been suggested to have home-based care services with the argument of retaining social networks, individual independence, and a higher quality of life [ ]. however, there are challenges related to home-based care, such as lack of support for family caregivers, lack of disease recognition, insufficient clarification in policies regarding hospital-to-home discharge, and poor system coordination [ ]. furthermore, the social distancing guidelines are almost impossible, particularly for those staying at home, due to limited resources for sustaining a home-based care infrastructure that allow the implementation of these measures. indeed, studies have suggested that the enforced isolation, quarantine, or lockdown of people with adrd at home due to covid- susceptibility can reduce transmission, minimize viral spread, and flatten the curve [ ]. however, this will disrupt social networking and restrict access to health services for them, which are particularly important resources for people with adrd. in addition, the increased dependency of people with adrd on closed family members during a pandemic may result in them having higher risks of domestic violence, abuse, and negligence [ ]. a lack of guidance for preventive measures, distressing news in the media, and rapidly changing information on viral infection can engender a greater risk of behavioral changes and confusion. consequently, both people with adrd and their family caregivers may face an unprecedented overwhelmed and anxious feeling, as well as an increasing risk of exposure to the virus in the context of the pandemic. the familial caregivers experience inequitable access to formal care resources that contributes to the strain while providing care to people with adrd. a potential reason for the figure . challenges related to alzheimer’s disease and related dementia (adrd) in a pandemic and proposed solutions. during a pandemic, the virus is not only threatening people with adrd, but also their family members and friends, who are the main sources of home-based care in contexts where there is a lack of adequate health care systems. a significant proportion of people with adrd has been suggested to have home-based care services with the argument of retaining social networks, individual independence, and a higher quality of life [ ]. however, there are challenges related to home-based care, such as lack of support for family caregivers, lack of disease recognition, insufficient clarification in policies regarding hospital-to-home discharge, and poor system coordination [ ]. furthermore, the social distancing guidelines are almost impossible, particularly for those staying at home, due to limited resources for sustaining a home-based care infrastructure that allow the implementation of these measures. indeed, studies have suggested that the enforced isolation, quarantine, or lockdown of people with adrd at home due to covid- susceptibility can reduce transmission, minimize viral spread, and flatten the curve [ ]. however, this will disrupt social networking and restrict access to health services for them, which are particularly important resources for people with adrd. in addition, the increased dependency of people with adrd on closed family members during a pandemic may result in them having higher risks of domestic violence, abuse, and negligence [ ]. a lack of guidance for preventive measures, distressing news in the media, and rapidly changing information on viral infection can engender a greater risk of behavioral changes and confusion. consequently, both people with adrd and their family caregivers may face an unprecedented overwhelmed and anxious feeling, as well as an increasing risk of exposure to the virus in the context of the pandemic. the familial caregivers experience inequitable access to formal care resources that contributes to the strain while providing care to people with adrd. a potential reason for the distress int. j. environ. res. public health , , of experienced by the caregivers could be due to the lack of awareness of the existing support services that they can utilize. . proposed solutions for home-based care for people with adrd we propose an outline of ‘action plans’ to minimize home-based care challenges related to people with adrd during the management of pandemic outbreaks (e.g., covid- ). these solutions may generate ideas and thoughts among health professionals, care managers, and policy makers to develop and implement better home-based care interventions for the target population. here, the action plan introduces a systematic process that includes fragmented adrd care policies and appropriate ways of minimizing possible adverse consequences of viral spread or pandemic. that is, a multidisciplinary counseling team can develop an urgent guideline and offer self-help guidance, for example, in association with adrd experts, psychologists, clinicians, social workers, occupational therapists, and advocacy groups to assist in home-based care and support. this professional team could coordinate in improving the autonomy and functional independence of people with adrd, as well as the adaptation of the care environment, and could add great value to home-based care interventions. even though the government initiatives in many countries put restrictions in nursing home care facilities (e.g., banning visitors and limiting nonessential group activities) [ ], specific guidance for home-based care settings for people with adrd have yet to be developed systematically. therefore, based on the identified challenges during covid- , we have proposed a list of recommendations related to pandemic situations (figure ) specifically catering to people with adrd that calls for immediate action. . . structural level people diagnosed with adrd aged years and over may typically suffer from several underlying health conditions such as chronic respiratory difficulty, cardiovascular disease, diabetes, and hypertension compared to people of a similar age without dementia [ ]. these diseases could increase the risk of infection by covid- . thus, people with adrd may continue staying at home depending on their circumstances and obtain suggestions from doctors remotely for any general health issues instead of frequent visits to the hospital [ ]. in addition, taking into account the higher prevalence of respiratory and cardiovascular difficulties in this population group (and even more if they develop covid- ), one of the key interventions would be training in energy-saving techniques, such as remote patient monitoring (rpm), that reduce fatigue during the performance of daily living activities (adls) for both patients and caregivers [ ]. people with adrd, who are either suspected or infected by covid- , can potentially benefit from an implementation of alternative care management strategies such as the hospital-at-home (hah) model [ ]. this service is a healthcare modality that administers specialized medical care to patients within their own homes. in the management of acute medical conditions that usually require hospitalization, hah could be an efficient alternative that enables better alignment of health needs with higher patient satisfaction and at a lower cost [ ]. the information related to viral infection has strongly influenced individuals’ behavioral responses among the older adults [ ]. it is important to disseminate more positive news, as well as the story of recovered covid- patients, especially with examples from people with adrd [ ]. for example, the covid- sos alert, which is developed by the world health organization (who) to convey first-hand positive information or recovery news to the public, can be motivational and reduce psychosocial distress and panic [ , ]. since family caregivers provide constant care and crucial daily support for members with adrd, they might have been disproportionately affected by covid- . this scenario is rather common to those living in a rural setting where community resources are limited [ ]. for example, people with adrd and their caregivers residing in rural areas may experience difficulty responding to int. j. environ. res. public health , , of technology-based resources. thus, the accessibility to a variety of communal adrd home-based care resources should be disseminated to them to a greater extent. as covid- disrupted both formal and informal caregiving process, there is a need to establish regular and frequent contacts between family caregivers, home care providers, and personal support workers (trained and specialized in home care) [ ] in order to obtain instructions easily while encountering any severe cases in people with adrd. in extremely serious situations, the home-based care providers should be aware about the “catchment area” if the people with adrd need to move to a different apartment, building, or even nearby locality for immediate treatment [ ]. it is currently a critical time for governments at all levels to invest in resources that will support developing a robust and long-term service guideline for family caregivers [ ]. the guideline can be developed by assessing previous formal and informal care resources and determining whether they meet current needs, because care needs often change over time with the progression of the disease [ , ]. as people with adrd affected by covid- will continue to rely mostly on their caregivers, there is a need to consider supporting the workforce to provide community-based services. . . personal level people with adrd often require support for adls and their need for support can be further propelled by stress and anxiety related to covid- [ , , ]. during a crisis, such as during a pandemic, the knowledge and skill of formal and informal caregivers associated with adls are important to quality of care. primary caregiver nurses are in an excellent position in such circumstances to provide training on care management to empower informal caregivers [ ]. by implementing that knowledge, informal caregivers can ensure both a comfortable involvement of people with adrd in daily activities as well as manage their behavioral changes. the multifaceted care needs of people with adrd in the emergency phase of a pandemic become even more challenging. some easy-to-follow written reminders along with relevant symbolic instructions on personal hygiene practices (e.g., hand washing procedure) or information on preventive measures (e.g., using face masks) can be helpful [ , , , ]. in addition, family caregivers can produce a do-it-yourself card set or post-it notes with simple instructions for daily activities to give to people with adrd. it is recommended that these supportive materials should be placed at frequently visited areas at home (e.g., on the fridge or on the door), so that the patients can get easy access to them. as discussed in above section, social isolation may disproportionately affect people with adrd who do not have close family members or friends and rely on the support of voluntary services or social care, such as daycare venues, community centers, and places of worship [ , ]. this implies that the isolation process can disrupt meaningful personal relationships and result in a greater risk of loneliness for people with adrd [ ]. caregivers can initiate participatory and recreation activities for people with adrd such as physical activity, gamification, virtual meetings, or digital storytelling [ , ]. in addition, different digital resources such as telephone calls and online-based cognitive behavioral therapies could be harnessed in order to protect their social networks and enhance a sense of belonging [ ]. furthermore, it is important to develop advanced care plans considering the wishes and unique needs of people with adrd to utilize readily available resources [ , ]. finally, family caregivers should share and exchange their experiences with friends and neighbors who are also taking care of people with adrd at home to promote good practices for home-based care. in contrast, the positive utilization of social isolation can also be useful in developing quality interactions between family members and the person with adrd that can strengthen inter-personal solidarity and subsequently alleviate inter-generational gaps [ ]. before the pandemic, some family members may have been busy with other commitments, but now, they have the opportunity to enjoy a higher degree of freedom to build a stronger relationship with their family member with adrd [ ]. thus, utilizing the benefit of the pandemic by spending more time together would help defend against overall mental distress. int. j. environ. res. public health , , of for medical assistance, both conventional and new technologies should be prioritized to connect with people with adrd and their caregivers [ , , ]. telehealth or ehealth services can be a useful tool, where applicable and available, in order to provide distance instructions, monitoring, surveillance, and follow-up treatments. moreover, assistive devices such as movement sensors, fall detection, medication reminder alarms, visualizations of hygiene instructions on television, and voice recorded instructions can be used to maintain their independence as well as reduce worry for family caregivers [ – ]. the family caregivers should keep in contact with the nearest emergency care service providers to maintain regular updates of the conditions of people with adrd [ ]. at the same time, they should be in touch with the family doctor if the people with adrd develop any symptoms of covid- to get instructions regarding medication, hygiene, and personal cleanliness [ , ]. it might also be beneficial to have a video conversation between the doctor, caregivers, and the patient to discuss their experiences navigating through the pandemic while managing medical conditions, the encountered stress, and effective communication techniques between all parties to provide the best medical assistance to people with adrd [ , , ]. . conclusions covid- imposed restrictions on social engagement and changed the way we used to do our daily activities. this impact could promote increasing further care needs and challenges for people with moderate to severe adrd. we anticipate that the care needs and challenges will not be the same in every local circumstance as it depends on associated death rates, available resources, societal context, and corresponding governmental responses. another issue that needs to be considered is that adrd is heterogeneous, which is the reason that any simple and generic recommendation for this group of people might not be effective. however, awareness of possible impacts and knowing details about the vulnerable risk group may prevent or reduce the harm of this pandemic on people with adrd and their potential caregivers. the governments of many countries have been trying to reduce the impact of pandemics and situations such as covid- , which will be under control with time despite major efforts required from everyone. while this uncertain pandemic situation has resulted in distressful experiences in the general population, we want to emphasize that these negative and anxious experiences will be magnified in people with adrd, given their original medical conditions. therefore, it gives us a realistic point to bring across adrd home-based care as one of the topmost global priorities. we suggest a high priority need to strictly follow the guidelines recommended by alzheimer’s disease international and cdc [ , ], along with our recommendations to alleviate social and economic impact in times of pandemic crises. author contributions: a.s.-r.: responsible for study concept, leading and delivering the research team and drafting final publication. c.h.l.: contributed to build international perspective, revise, and drafting final publication. a.r.: advised on nursing aspects and supported with empirical patients with adrd management experiences and contributed to drafting final publication. y.j.: developed and led literature searches as well as advised on medical and public health aspects, advised on revisions to drafting final publication. all authors gave general advice on developing the paper, read, and approved the final manuscript. all authors have read and agreed to the published version of the manuscript. funding: this research received no external funding. conflicts of interest: the authors declare no conflict of interest. abbreviations adrd: alzheimer’s disease and related dementia; cdc: centers for disease control and prevention; covid- : coronavirus disease ; hah: hospital-at-home; rpm: remote patient monitoring; sars: severe acute respiratory syndrome. int. j. environ. res. public health , , of references . li, q.; guan, x.; 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[crossref] publisher’s note: mdpi stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. © by the authors. licensee mdpi, basel, switzerland. this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license (http://creativecommons.org/licenses/by/ . /). http://dx.doi.org/ . /jgs. http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /ppar/praa http://dx.doi.org/ . /s - ( ) -x http://dx.doi.org/ . /j. - . . .x http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /geronb/gbaa http://www.ncbi.nlm.nih.gov/pubmed/ http://dx.doi.org/ . /s - ( ) - http://dx.doi.org/ . /s - - - http://dx.doi.org/ . / . . http://dx.doi.org/ . /gerona/glaa http://creativecommons.org/ http://creativecommons.org/licenses/by/ . /. 	background 	covid- and people with adrd 	challenges in home-based care for people with adrd 	proposed solutions for home-based care for people with adrd 	structural level 	personal level 	conclusions 	references wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ diagnosing and treating depression in patients with alzheimer’s disease review diagnosing and treating depression in patients with alzheimer’s disease anna d. burke . danielle goldfarb . padmaja bollam . sehar khokher received: may , / published online: august , � the author(s) abstract although cognitive and functional impairment are the hallmark features of alzheimer’s disease (ad), neuropsychiatric symptoms associated with ad account for increased rates of disability and profoundly impact the quality of life of both patients and their caregivers. this narra- tive review of current evidence provides practi- cal guidance in diagnosing and managing depression in patients with ad using pharma- cological and nonpharmacological interven- tions. after apathy, depression is the second most common neuropsychiatric symptom in ad. diagnosing late-life depression (lld), par- ticularly in those affected by ad, is complicated because older patients may not meet the criteria for a major depressive disorder. clinically, late- life depression and dementia can be indistin- guishable. although these two entities are now thought to be related, the pathologic mecha- nisms remain unclear. evidence suggests that lld may be a prodromal symptom of neu- rodegenerative disease. the various geropsy- chiatric measures currently used to diagnose, rate the severity of, and monitor the progress of treatment for depression are imperfect. neu- roimaging represents a promising avenue toward understanding the complex pathophys- iologic relationships between dementia and lld, and will support the pursuit of biomarker- driven diagnosis and treatment. nonpharma- cologic interventions to relieve depression in persons with cognitive impairment and dementia include emotion-oriented therapies, behavioral and cognitive-behavioral modifica- tion programs, and structured activity pro- grams. sensory-stimulation therapies and multisensory approaches show some promise for successfully treating depression in patients with dementia, but further rigorous research is needed to establish their validity. clinical con- sensus and research appear to support selective serotonin reuptake inhibitors as a first choice for the pharmacological treatment of depres- sion in patients with dementia. however, initial support for these therapies remains variable, and further investigation is needed. extra care is required in prescribing to this population because of the generally high level of medical and psychiatric comorbidity and the potential difficulty in assessing the cognitively impaired patient’s response. enhanced digital features to view enhanced digital features for this article go to https://doi.org/ . / m .figshare. . a. d. burke (&) � p. bollam department of neurology, barrow neurological institute, st. joseph’s hospital and medical center, w. thomas rd., phoenix, az , usa e-mail: neuropub@barrowneuro.org d. goldfarb banner alzheimer’s institute, phoenix, az, usa s. khokher wellspan philhaven, mount gretna, pa, usa neurol ther ( ) : – https://doi.org/ . /s - - - https://doi.org/ . /m .figshare. https://doi.org/ . /m .figshare. https://doi.org/ . /m .figshare. https://doi.org/ . /m .figshare. http://crossmark.crossref.org/dialog/?doi= . /s - - - &amp;domain=pdf https://doi.org/ . /s - - - keywords: alzheimer’s disease; behavioral and psychological symptoms in dementia; dementia; depression; geriatric depression; late-life depression; neuroimaging in depression; neuropsychiatric symptoms in dementia; sleep and depression; vascular depression abbreviations ad alzheimer’s disease cbt cognitive behavioral therapy csdd cornell scale for depression in dementia csf cerebrospinal fluid ct computed tomography dmn default mode network dsm diagnostic and statistical manual of mental disorders fdg fluorodeoxyglucose gds geriatric depression scale lld late-life depression mci mild cognitive impairment mmse mini-mental state examination mri magnetic resonance imaging nacc national alzheimer’s coordinating center nimh-dad national institute of mental health diagnostic criteria for depression in ad nps neuropsychiatric symptom nrem non-rapid eye movement pet positron emission tomography rem rapid eye movement scn suprachiasmatic nucleus spect single-photon emission computerized tomography ssri selective serotonin reuptake inhibitor sws slow-wave sleep wml white matter lesion introduction alzheimer’s disease (ad) is the most common form of dementia. this disorder currently affects an estimated . million americans; a figure that is expected to increase to nearly million by [ ]. although the hallmark cognitive and functional impairment features of the disorder are most often emphasized, the neuropsychiatric symptoms associated with the disease account for increased rates of disability and profoundly decrease the quality of life of both patients and their caregivers. neuropsychiatric symptoms (nps) affect nearly all patients with ad ( %) [ ]. these symptoms are associated with impairment in activities of daily living [ ], poor quality of life [ ], earlier institutionalization [ ], accelerated disease progression, increased mortality [ ], caregiver stress [ ], and increased costs of care [ ]. apathy and depression are the most com- mon forms of nps in alzheimer’s disease. although many geropsychiatric measures are available to diagnose, rate the severity of, and monitor the progress of treatment for depres- sion, these measures remain imperfect. addi- tionally, numerous pharmacological and nonpharmacological treatments are used for depression in patients with ad. the purpose of this narrative review is to provide practical guidance in diagnosing and managing depres- sion in patients with ad using both pharma- cological and nonpharmacological interventions. the data for the narrative were compiled from the medline and pubmed data- bases using the terms ‘‘depression,’’ ‘‘alzhei- mer’s disease,’’ ‘‘dementia,’’ ‘‘neuropsychiatric symptoms,’’ and ‘‘behavioral and psychological symptoms in dementia.’’ the data were col- lected from / / to / / . compliance with ethics guidelines this article is based on previously conducted studies and does not contain any studies with human participants or animals performed by any of the authors. depression in patients with alzheimer’s disease depression is second to apathy as the most common nps in patients with ad. depression is common in mild cognitive impairment (mci) neurol ther ( ) : – stages. a meta-analysis of studies found a prevalence of % in patients with mci, with depressive symptoms being more prevalent in clinical ( %) versus community-based ( %) samples [ ]. depression is also a predictor of progression from normal cognition to mci and from mci to dementia. one study showed that % of patients in population-based ad studies and % of patients in hospital-based studies suffer from depression [ ]. there is evidence that depression may be an early manifestation of ad [ ]. the presence of mci in depression has been shown to predict later development of ad [ ]. patients with ad and depression appear to have more severe neuropathology (tau, amy- loid, and vascular burden) than those without depression and show more severe loss of sero- tonin receptors and serotonin transporter binding, which may have implications for treatment [ ]. older adults with late-onset depression are more likely to have vascular risk factors (in- cluding a history of cerebrovascular disease) [ ]. neuroimaging changes such as white matter hyperintensities or leukoencephalopa- thy, particularly those affecting the frontal- striatal and frontal-limbic brain pathways, are common among patients with late-onset depression [ ]. other risk factors for the development of depression in patients with ad include a previous history of depression [ ], apoe positivity [ , ], a family history of depression, and female sex [ ]. the use of cer- tain medications such as beta-blockers, corti- costeroids, and benzodiazepines as well as prolonged exposure to dopamine agonists, stimulants, anticonvulsants, hormone-altering drugs, proton pump inhibitors and h blockers, statins or lipid-lowering drugs, and anticholin- ergic medications such as dicyclomine also increase the likelihood of developing a depres- sive disorder. the stage of dementia may also impact the risk of developing depression. forsell et al. sug- gested that depression becomes more frequent as ad progresses from mild to moderate dementia, and becomes less common in severe dementia [ ]. however, lyketsos et al. found no significant differences in the frequencies of major and minor depression among the stages of mild, moderate, and severe ad [ ]. starkstein et al. [ ] and lopez et al. [ ] found that major depression was less frequent in ad patients with severe cognitive deficits than in those with mild or moderate cognitive deficits. these differences may be related to the challenges involved in diagnosing depression in the context of ad. diagnosis of depression prevalence approximately % of patients have their first onset of depression at age or older [ ]. according to some epidemiological studies, the point prevalence of major depression is . %– . % in patients older than years, which increases to % in those older than years [ , ]. the diagnosis of depression in seniors, and in particular, in those affected by ad, is com- plicated by additional challenges. elderly patients may not meet full diagnostic and sta- tistical manual of mental disorders (dsm)- [ ] criteria for a major depressive disorder (table ). they frequently do not report a depressed mood, but instead present with less specific symptoms such as insomnia, anorexia, treatment-resistant pain symptoms, and fatigue. older patients, particularly women, may have vegetative symptoms and cognitive dysfunction that overlap with symptoms of ad [ ]. some features that suggest depression include fre- quent office visits or use of medical services; persistent reports of pain, fatigue, insomnia, and headache; changes in sleep or appetite; unexplained gastrointestinal symptoms; and signs of social isolation and increased depen- dency. elderly individuals may also dismiss less severe depression as an acceptable response to life stressors or a normal part of aging. impact of depression late-life depression (lld) remains underdiag- nosed and inadequately treated—in late life, neurol ther ( ) : – this is associated with higher rates of morbidity and mortality. the rates of cognitive, social, and physical impairment, as well as the resulting decrease in independence, significantly impact the lives of seniors suffering from depression [ , ]. compared to non-depressed counter- parts, severely depressed older adult patients have elevated rates of mortality (controlling for sex, preexisting chronic health problems, socioeconomic status, and fitness) [ – ]. diagnostic criteria in , the national institute of mental health convened an expert panel that developed a provisional set of diagnostic criteria for depres- sion in ad (nimh-dad; table ) [ , ]. these criteria were derived from dsm-iv criteria for major depression, with a few modifications. the number of symptoms required for a diagnosis of depression was decreased from five to three. the duration and frequency of depressive symptoms were also decreased; symptoms need only be present together within the same -week period, as compared with the dsm-iv require- ment that symptoms be present ‘‘most of the day, nearly every day’’ for at least weeks. cognitive complaints such as a decreased ability to think and to concentrate were eliminated. anhedonia criteria were mod- ified to focus on decreased affect and pleasure associated with social and other activities. symptoms distinct to this population, includ- ing withdrawal, social isolation, and irritability, were added as new symptoms. these changes were believed to reflect the clinical features of depression in patients with ad better [ , ]. teng et al. evaluated a cohort of patients, diagnosing depression at baseline and after months using nimh-dad criteria and the structured clinical interview for dsm-iv axis i disorders [ ]. depressive symptoms also were assessed with the cornell scale for depression in dementia (csdd), the geriatric depression scale (gds), and the neuropsychi- atric inventory questionnaire. the use of nimh-dad criteria allowed the investigators to identify a greater proportion of ad patients as depressed than when several other established table dsm- diagnostic criteria for depression criteria the individual must be experiencing five or more symptoms during the same -week period, and at least one of the symptoms should be either ( ) depressed mood or ( ) loss of interest or pleasure symptoms . depressed mood most of the day, nearly every day . markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day . significant weight loss when not dieting or weight gain, or decrease or increase in appetite nearly every day . a slowing down of thought and a reduction of physical movement (observable by others, not merely subjective feelings of restlessness or being slowed down) . fatigue or loss of energy nearly every day . feelings of worthlessness or excessive or inappropriate guilt nearly every day . diminished ability to think or concentrate, or indecisiveness, nearly every day . recurrent thoughts of death, recurrent suicidal ideation without a specific plan, or a suicide attempt or a specific plan for committing suicide diagnosis to receive a diagnosis of depression, these symptoms must cause the individual clinically significant distress or impairment in social, occupational, or other important areas of functioning. the symptoms must also not be a result of substance abuse or another medical condition adapted from [ ] neurol ther ( ) : – assessment tools for depression were applied. these results are consistent with the results from a previous study that interpolated nimh- dad diagnoses from data collected using a structured interview from another diagnostic instrument [ ]. variants of depression the validity of existing criteria for geriatric depressive disorders, particularly the dsm- , continues to be questioned. data suggest that there are qualitative differences in the clinical presentation of depression in younger and older adults and that the different presentations of depression in older adults are not fully assessed by the current measures of depression [ , , ]. these differences are even further potentiated in cognitively impaired seniors. in a study comparing major depressive fea- tures between patients with ad and cognitively normal older adults, several significant differ- ences were noted. patients with ad had more prominent difficulties with concentration and indecisiveness, fewer sleep disturbances, and fewer reports of feelings of worthlessness or excessive guilt. however, patients with ad were noted to have higher rates of psychotic symp- toms, such as delusions and hallucinations. there was also a trend toward higher rates of psychomotor agitation/retardation and fatigue/ table national institute of mental health diagnostic criteria for depression in ad criteria a. three (or more) of the following symptoms must be present during the same -week period and represent a change from previous functioning. at least one of the symptoms must either be ( ) depressed mood or ( ) decreased positive affect or pleasure . clinically significant depressed mood . decreased positive affect or pleasure in response to social contacts and usual activities . social isolation or withdrawal . disruption in appetite . disruption in sleep . psychomotor changes . irritability . fatigue or loss of energy . feelings of worthlessness, hopelessness, or excessive or inappropriate guilt . recurrent thoughts of death, suicidal ideation, plan or attempt b. all criteria are met for dementia of the alzheimer type (dsm-iv) c. the symptoms cause clinically significant distress or disruption in functioning d. the symptoms do not occur exclusively in the course of delirium e. the symptoms are not due to the direct physiological effects of a substance f. the symptoms are not better accounted for by other conditions such as major depressive disorder, bipolar disorder, bereavement, schizophrenia, schizoaffective disorder, psychosis of alzheimer disease, anxiety disorders, or substance- related disorders adapted from [ ] neurol ther ( ) : – loss of energy in patients with more advanced ad [ ]. the variability in the cognitive profile of geriatric depression also suggests that this syn- drome represents a heterogeneous group of disorders requiring careful neuropsychiatric assessment and treatment planning [ ]. attempts have been made to define and cate- gorize the different presentations of depression in seniors. several geriatric-specific variants of depression have been proposed. one of these, the ‘‘depletion syndrome,’’ is characterized by hopelessness, loss of appetite, thoughts of death, and lack of interest [ , ]. another variant is the ‘‘depression-executive dysfunction syndrome’’ [ ]. in this syndrome, cognitive performance is typically impaired on measures of verbal fluency, naming, and initiation/per- severation; psychomotor retardation and anhe- donia are included, but vegetative symptoms, agitation, and guilt are less severe than in other types of depression. diagnostic assessment tools although a structured clinical interview remains the cornerstone of diagnosis, a variety of geropsychiatric measures have been devel- oped to help diagnose depression, rate the severity of the disease, and monitor treatment progress (table ). in general, current test measures were found to underestimate the depletion syndrome, although they generally inflated the extent to which depression was found in older adults. therefore, current measures may underestimate depression in older adults because they do not measure the most common subtype of geriatric depression [ ]. many of the available geropsychiatric tests remain imperfect. most existing depression self- report scales used for older adults (e.g., beck depression inventory-ii, center for epidemio- logic studies depression scale, zung self-rating depression scale) fail to consider the level of cognitive impairment along with visual deficits of older patients. the validity of certain depression rating scales is considerably decreased in patients with a mini-mental state examination (mmse) score equal to or less than [ ]. with the exceptions of the gds and csdd, which were specifically developed for use in geriatric patients and contain fewer somatic items, most existing depression rating scales currently used for older adults have been developed and validated in younger popula- tions. no current self-report assessment tools discriminate between subtypes of geriatric depression [ ]. most self-report depression scales currently used for older adults, e.g., the beck depression inventory-ii, contain items tapping somatic symptoms. when there is considerable overlap between depressive symptoms and physical conditions, failure to take the physical illness into account may result in an overestimation of depression in such populations [ ]. this over- lap may affect the assessment of treatment efficacy. cognitively impaired patients also underre- port symptoms on patient-focused depression scales such as the gds, as they are unable to recall or are not aware of the depressive symp- toms reported by the caregivers [ ]. as the reliability of gds diminishes with mmse scores below , input from caregivers becomes more important as the patient’s cognitive status declines [ ]. therefore, an assessment tool that incorporates caregiver input, such as the csdd, may be more appropriate in patients with dementia [ ]. patients with csdd scores above require treatment, and those with scores above require close follow-up and possibly treatment [ ]. neuroimaging in ad and depression the clinical picture of lld can be indistin- guishable from that of dementia. there is increasing awareness of a relationship between these two entities, yet the pathologic mecha- nisms remain unclear. evidence is growing that suggests that lld may be a prodromal symptom of neurodegenerative disease. the ability to distinguish between lld and dementia, partic- ularly early in the disease course, has significant neurol ther ( ) : – implications for clinical care, along with our understanding of the neurobiological systems implicated. neuroimaging represents a promis- ing avenue to elucidate these two potentially overlapping pathologies. various imaging techniques, structural and functional, are currently used in research and clinical settings for the evaluation of dementia, lld, or both. clinical consensus guidelines [ ] recommend the use of structural brain imag- ing—either magnetic resonance imaging (mri) (preferred) or computed tomography (ct)—for the evaluation of a cognitive/dementia syn- drome in order to rule out structural and potentially treatable causes and to assess atro- phy. the most characteristic structural imaging biomarker of ad is hippocampal atrophy [ , ]; however, this finding is not specific for table depression scales used in geriatric psychiatry scales description geriatric depression scale (gds) self-report questionnaire with ‘‘yes’’ or ‘‘no’’ responses. different versions are available, with the number of questions ranging from to . the -item gds is reported to be as effective as the -item gds for the screening of depression in cognitively intact older individuals cornell scale for depression in dementia (csdd) developed specifically for the assessment of depression in dementia. it is a -item comprehensive interview of both patient and informant and includes the clinician’s impression assesses signs and symptoms during the week preceding the interview nimh-dad the nimh provisional diagnostic criteria for depression in alzheimer’s disease, a provisional set of diagnostic criteria for depression in ad, developed in in order to better reflect the clinical features of depression in ad center for epidemiologic studies depression scale (ces-d), nimh a -item self-report questionnaire on symptom frequency during the past week. responses range from rarely or none to most or all the time neuropsychiatric inventory (npi) useful to assess behavioral areas and neurovegetative areas. assessment is based on informant (caregiver) observations. scores for the areas reveals frequency and severity and caregiver distress hamilton rating scale of depression (ham-d) gold standard of observer-rated depression rating scales. requires training to administer. is helpful in assessing the severity of depression montgomery-asberg depression rating scale (madrs) administered by a trained interviewer. helpful to measure progress. useful for assessment of depression in individuals with physical illness beck depression inventory (bdi) a -item, self-report, multiple choice inventory. revised version is bdi-ii. helps to assess severity of depression patient health questionnaire (phq) phq- —self-report questionnaire: helps screen, diagnose, monitor, and measure severity of depression. phq- —‘‘first step’’ approach: enhances routine enquiry zung self-rating depression scale (sds) a -item self-report questionnaire to screen affective, psychological, and somatic symptoms associated with depression neurol ther ( ) : – ad and is seen in other neurodegenerative dis- eases. smaller hippocampal volumes are associ- ated with memory performance [ ]. mri mri morphometric studies in lld demonstrate atrophy of various brain structures including lower gray matter volumes in the frontal–tem- poral lobes, hippocampus, parahippocampal gyrus, amygdala, putamen, pallidum, and tha- lamus compared to controls [ ]. another study showed that lld is associated with cortical thinning, which is associated with age at depression onset, sex, and level of cognitive functioning [ ]. volumetric hippocampal changes in lld can reflect one or more patho- physiological processes, including early neu- rodegenerative disease, vascular disease, and (duration-related) treatment of depressive ill- ness [ , ]. based on an imaging meta-analy- sis, patients with lld and ad both demonstrate abnormalities in hippocampal volume and ventricular enlargement [ ]. one potential shared pathway to dementia and depression is vascular disease. neuroimag- ing is essential to our understanding of this complex relationship. alexopoulos et al. first described the vascular hypothesis for lld, positing that cerebrovascular disease plays a critical role in provoking and perpetuating depressive symptoms as a result of structural damage to frontal–subcortical circuits [ ]. however, the diagnosis of vascular depression remains controversial, without definitive bio- logical or neuroanatomical substrates, and the term is used more often in research than in the clinical setting. the diagnosis is driven largely by neuroimaging findings of white matter hyperintensities on t -weighted or fluid-atten- uated inversion recovery mri, subcortical lacunes, microinfarcts, and microhemorrhages along with frontal and hippocampal gray mat- ter atrophy [ ]. lld with these imaging find- ings has been termed ‘‘mri-defined vascular depression’’ [ ]. functional imaging functional imaging is used in the clinical dementia evaluation in atypical cases, early- onset cases, or other uncertain cases where fur- ther specificity is warranted despite standard structural imaging [ ]. the most commonly used functional scans in this setting are fluo- rodeoxyglucose positron emission tomography (fdg-pet) or single-photon emission computed tomography (spect). fdg-pet technology demonstrates glucose metabolism, which is a surrogate for neuronal and synaptic activity along with neurodegeneration. spect incorpo- rates ct with a radioactive tracer to demon- strate cerebral blood flow or perfusion. perfusion imaging techniques, such as spect, may provide a promising approach to differentiating depression from dementia. amen et al. evaluated perfusion neuroimaging using spect in more than subjects with a diagnosis of depression, dementia, or both [ ]. subjects with dementia had lower regional cerebral blood flow, specifically seen in the amygdala and hippocampus, compared to sub- jects with depression, and these changes were magnified in those with both depression and dementia. overall, spect distinguished between depression and dementia with % accuracy. white matter lesions the pathophysiology of white matter lesions (wmls) has not been fully elucidated. it is generally accepted that wmls are caused, at least in part, by small-vessel ischemia. however, given that wmls are found in some individuals with no major vascular risk factors (hyperten- sion, hyperlipidemia, diabetes, heart disease, smoking, and obesity), other non-vascular fac- tors must play a role [ ]. one autopsy study compared older subjects with a history of major depression to age-matched controls. at autopsy, deep wmls were found to be ischemic in nature for all depressed subjects compared to less than one-third of control subjects. fur- thermore, in the depressed subjects, ischemic lesions were significantly more present in the neurol ther ( ) : – dorsolateral prefrontal cortex compared with the non-depressed group. of note, the non-de- pressed group had more clinical vascular disease during life than the depressed group. on histopathologic analysis, ischemic deep wmls revealed infarction, gliosis, axonal loss, ischemic demyelination, or a combination of these, supporting the vascular hypothesis of depression [ ]. one multimodal imaging study evaluated brain mri features associated with late-life depressive symptoms in older community- dwelling adults, analyzing whole-brain vari- ables including white matter hyperintensity burden, fractional anisotropy (a measure of water movement), and gray matter volume. the loss of gray matter volume was most significant in the bilateral insula and anterior cingulate cortex. the insula has been previously impli- cated in major depressive disorder [ ] and, furthermore, is a brain region known to be sensitive to hypoperfusion, supporting a cere- brovascular pattern for depressive symptoms in older adults. the causal relationship between wml bur- den, cognitive changes, and lld remains unclear. one population-based study of older adults [ ] analyzed the relationship between wmls and cortical atrophy on ct and later development of depression or dementia in community-dwelling adults over a -year per- iod. the authors found that wml and temporal lobe atrophy independently predicted later development of depression and dementia, pos- sibly suggesting shared pathogenetic pathways. there remains a considerable debate, regarding whether shared versus distinct pathophysio- logic pathways exist between dementia and lld. while evidence supports the presence of hippocampal atrophy in lld, one study showed a lack of identifiable ab pathology in lld based on [ f]flutemetamol amyloid pet findings [ ]. another study assessed cortical ab with f- florbetapir pet and showed that depressed patients with moderate-to-severe treatment resistance had higher f-florbetapir standard- ized uptake value ratios than healthy controls in the parietal regions [ , ]. as well, the ele- vated amyloid burden in depressed older patients with moderate-to-severe treatment resistance was seen in the precuneus, parietal, temporal, and occipital regions. overall amy- loid pet findings in the more treatment-resis- tant depressed group were similar to typical findings in confirmed ad subjects. hence, treatment-refractory depression in older indi- viduals may represent early changes in ad-re- lated pathophysiology. csf biomarkers liguori et al. sought to evaluate whether cere- brospinal fluid (csf) ad biomarkers and f- fdg pet findings in older adults (n = ) with concomitant dementia and untreated depres- sion could differentiate ad from lld [ ]. csf was collected, and fdg-pet was completed at baseline and after a -year interval. the authors found that csf ab levels were significantly higher in lld (range, – pg/ml) com- pared to ad patients (range, – pg/ml). furthermore, csf ad biomarkers (ab and tau proteins) in lld patients were similar to those of controls. regarding f-fdg pet, patients with ad showed a significant reduction in f- fdg pet uptake in temporoparietal regions compared to both controls and lld subjects, whereas the lld and control groups had similar f-fdg pet findings. it should be noted that lld subjects showed nonspecific, heteroge- neous patterns of glucose hypometabolism involving various cortical and subcortical brain areas. neural networks while structural and functional neuroimaging studies have elucidated gray matter volumetric changes (network nodes), white matter tract disruptions (network edges), and rest- and task- related changes in network dynamics, increas- ing evidence points to the importance of dis- rupted functional neural network connectivity in the pathophysiology and symptomatology of both cognitive impairment and lld [ , ]. intrinsic neural networks found to be involved in lld include the default mode network (dmn), executive control network, and salience network. these networks become active in the neurol ther ( ) : – resting state (not doing a task) and inactive when a person is engaged in any attention-de- manding tasks, which is called task-induced deactivation [ ]. imaging these intrinsic net- works requires either functional pet scans or resting-state functional mri to evaluate regio- nal cerebral blood flow. during the resting state, functional mri shows an increased regional blood flow or blood oxygenation level depen- dent signal within the set of brain regions, while there is a decrease in this signal during attention-demanding tasks. increasing evidence suggests that the dmn could be the neural basis of the connection between lld and ad [ ]. the dmn, first described by raichle et al. [ ], is involved in wakeful rest, mind-wandering, and self-referen- tial thinking, and is considered to involve cer- tain spatially distributed brain regions with synchronized activity patterns, including the posterior cingulate cortex/precuneus, superior frontal gyrus, medial prefrontal cortex, inferior parietal lobule, lateral temporal cortex, angular gyrus, hippocampus, and cerebellum [ , ]. sheline et al. proposed that a failure to deactivate the dmn during cognitive or emo- tional tasks is a network-based mechanism in depression [ ]. dmn overactivity has been linked to negative rumination in depression [ ]. negative ruminations are a type of self- referential thinking, which is common in depression in both early and late life. though not a core diagnostic feature, higher levels of rumination are predictive of more severe depressive symptoms in depressed individuals [ ]. increased functional connectivity between the subgenual prefrontal cortex and the dmn has been shown in major depressive disorder, and is posited to be a neural substrate of depressive rumination [ ]. it is hypothesized that dmn activity corre- lates with increased neuronal and synaptic activity along with increased ab and possibly tau release, which, in a vulnerable individual, could predispose to and propagate ad pathol- ogy. one study of cognitively normal individ- uals with pittsburgh compound b pet- confirmed ab deposition found that elevated ab disrupted dmn functional connectivity even in the absence of a task. connectivity between the precuneus and hippocampus was significantly lower in nondemented older adults with ab deposition compared to those without ab pla- ques [ ]. hence, there appears to be a bidirec- tional relationship between abnormal dmn functional connectivity and ad pathology, where one begets the other. future of neuroimaging in ad and depression many questions remain unanswered, but neu- roimaging represents a promising and vital avenue toward understanding the complex pathophysiologic relationships between dementia and lld and for supporting the pur- suit of biomarker-driven diagnosis and treatment. sleep and depression causes of sleep disruption numerous sleep changes occur with normal aging, including advanced sleep timing, increased sleep fragmentation, more fragile sleep, and less time in deeper non-rapid eye movement (nrem) sleep [ ]. aging leads to changes in the structures involved in generating or entraining circadian rhythms, and con- tributes to altered circadian rhythm timing with advancing age. characteristic age-related chan- ges in rest-activity circadian rhythms include lower amplitude [ , ], fragmentation of loss of rhythms, and decreased sensitivity to suprachiasmatic nucleus (scn) time cues such as light exposure [ ]. in dementing neurode- generative diseases, these sleep and circadian changes are magnified along with others such as decreased rapid eye movement (rem) sleep [ ], all of which contribute to worsening dementia symptoms and brain pathology. while the sleep–wake cycle is the best-char- acterized circadian rhythm, many other forms of circadian disruption are also common. in dementia, circadian dysfunction worsens as the disease progresses, which often results in sleep–wake rhythm disorders, such as irregular neurol ther ( ) : – sleep–wake rhythm disorder [ ]. the patho- physiology of circadian disruption in dementia is yet to be fully elucidated; however, internal and external factors have been implicated, including scn dysfunction, abnormal scn input, and disrupted environmental factors (so- called zeitgebers). the integrity of the scn (the central pacemaker) and the monosynaptic pathway from the retina to the scn (known as the retinohypothalamic tract) are essential for proper circadian function. scn degeneration results in an inability to consolidate wakeful- ness and the development of an abnormal -h rhythm. autopsy studies of brains from patients with severe ad reveal scn degeneration, namely neuronal loss and neurofibrillary tangle formation [ ]. disrupted environmental factors, such as light exposure, social cues, activity, and meal- times, influence the period, phase, and ampli- tude of circadian rhythms. without sufficient exposure to timed light, the biological clock becomes desynchronized with the solar day, resulting in deleterious effects on various physiological functions, neurobehavioral per- formance, and sleep [ ]. older adults and, to a greater extent, those institutionalized are more likely to be exposed to less robust daytime light [ ]. ancoli-israel and colleagues demonstrated that lower daytime light levels contribute to increasingly abnormal circadian rhythms as measured by actigraphy and were associated with an increase in night-time awakenings, even after controlling for the level of dementia [ ]. gehrman et al. hypothesized that in the early stages of dementia, scn damage results in a decline in circadian rhythmicity, at which point environmental cues take on a larger role, contributing to a resynchronization of circadian rhythms [ ]. when dementia becomes severe, environmental cues lose their potency. sleep disruption and depression meanwhile, sleep disruption is a core feature of depression, with up to % of depressed indi- viduals having subjective sleep complaints [ ]. depressed patients often show altered circadian rhythms, sleep disturbances, and diurnal mood variation. sleep disruption is a risk factor in the development of depression [ , ], is often the first subjective symptom, and is associated with an increased risk of relapse along with an increased risk of suicide [ ]. in polysomno- graphic studies, individuals with major depres- sive disorder have prolonged sleep latency (longer time to fall asleep), frequent nocturnal awakenings, and poor sleep efficiency (per- centage of time sleeping while in bed) [ ]. additionally, sleep architecture in depressed individuals shows decreased rem latency (time from sleep onset to first epoch of rem) and an increased proportion of rem sleep overall [ ]. paradoxically, some studies have demonstrated that sleep deprivation interventions can acutely reverse depressive symptoms in approximately – % of patients with major depression, but this remission was temporary, and disease relapsed following subsequent rebound sleep [ , ]. biochemical factors in sleep dysfunction it is established that soluble ab levels fluctuate diurnally—they increase during awake time and decrease during sleep [ ]. these fluctuations are thought to be related to neuronal activity and metabolic demand. sleep disruption and deprivation, specifically decreased nrem slow- wave sleep (sws) at \ hz, is associated with aggregation of ab and tau neurofibrillary tan- gles [ , ]. decreased nrem sws is associated with impaired overnight memory consolidation and weaker hippocampal-neocortical memory transformation [ ]. lucey and colleagues recently demonstrated elevated tau levels in both csf and pet analysis in cognitively asymptomatic or mildly impaired subjects with decreased nrem sws [ ]. evidence increasingly supports the role of dysfunctional ab and tau clearance systems in the development of ad. a sleep-dependent brain clearance system has been described, which is a whole-brain perivascular network facilitating the clearance of interstitial solutes, including ab and tau. the csf-interstitial fluid system is also known as the glymphatic system because of its hypothetical reliance on glial cells neurol ther ( ) : – for interstitial transport [ , ]. in rodent studies, xie and colleagues found that the csf- interstitial fluid clearance system was mainly active during sleep, specifically sws [ ]. the authors theorize that this occurs because, dur- ing sleep, neurons are less active and shrink in size, which results in a % increase in the interstitial space volume relative to the awake state. with more volume and less resistance, csf flow and clearance is hypothetically greater. functional neuroimaging studies demon- strate that dmn connectivity is decreased dur- ing sleep [ ]. specific brain regions that show a decrease in activity with progression from wakefulness to sws include the posterior cin- gulate cortex, parahippocampal gyrus, and medial prefrontal cortex [ ]. the dmn becomes less active during sws, indicating a drop in neuronal activity and metabolic demand. ju et al. posit that poor sleep quality results in increased neuronal activity, con- tributing to chronically increased soluble ab, which leads to an increased risk of amyloid plaque formation over time [ ]. links among sleep dysfunction, depression, and dementia the relationship between sleep dysfunction, depression, and dementia appears to be dynamic and synergistic, though the pathome- chanisms remain unclear. both sleep disruption and depression are common in dementia, independently and co-occurring, and both can be prodromal symptoms of neurodegenerative disease. while the relationship between sleep dysfunction and ad is often described as bidi- rectional, bringing depression into the equation could lead to a tridirectional relationship, which is challenging to disentangle [ ]. burke et al. used a syndemic approach to analyze the associative effects of depression, anxiety, and sleep disturbance on the risk of later development of symptomatic ad in a cognitively asymptomatic cohort of more than , individuals in the national alzheimer’s coordinating center (nacc) [ ]. the authors describe the syndemic approach as ‘‘reaching beyond a person’s biology and takes account of stress, inequality, the community, and the environment, all over time, as potential cofac- tors in the exacerbation of illnesses’’ [ ]. the authors showed strong independent hazards of ad development for depression, sleep distur- bance, and anxiety independently. the additive interaction and risk of eventual ad diagnosis were significant for those experiencing recent depression symptoms and sleep disturbances, current or lifetime, as compared to those with- out either symptom. those with clinician-veri- fied depression and sleep disturbance showed three times greater risk of eventual ad diagnosis than those without these symptoms. another study by the same group using nacc data showed that these independent risk relation- ships between sleep, dementia, and depression were even stronger for apoe carriers, indicat- ing a genetic role [ ]. treatment for sleep dysfunction in patients with dementia and depression sleep represents a promising area for the dis- covery of diagnostic markers and novel treat- ment approaches in dementia and lld. pharmacologic and nonpharmacologic approa- ches to improve nrem sws may serve to decrease or delay the aggregation of toxic ab and tau proteins. one recent retrospective study evaluated whether the use of trazodone, a commonly used sleep medication in older adults, resulted in less cognitive decline com- pared to non-trazodone users. trazodone was originally developed as an antidepressant, though it was found to be less effective for that indication [ ]. trazodone has been previously shown to significantly increase nrem sws on polysomnography [ ]. analyzing nacc data, a study showed that trazodone non-users declined . -fold faster on the mmse than tra- zodone users over years. other hypnotics, including melatonin, ramelteon, and mirtazap- ine, have not produced such an improvement in nrem sws [ ]. beyond medications, sleep and circadian dysfunction in older adults can be targeted through nonpharmacologic and behavioral neurol ther ( ) : – approaches. such therapies include cognitive behavioral therapy, chronotherapies such as bright-light exposure, and social rhythm thera- pies for the illness. evidence suggests that addressing sleep impairment in older adults, particularly before the development of cogni- tive symptoms, could have disease-modifying effects. however, more research is needed. treatment of depression in patients with ad currently, no clearly established consensus guidelines exist regarding the treatment of depression in patients with ad. however, a large body of literature has documented the different approaches and medications that have been investigated. both pharmacological and nonpharmacological interventions have been shown to help reduce depressive symptoms in cognitively impaired patients and in improving their quality of life. these interventions can broadly be divided into nonpharmacological therapies and lifestyle interventions and psychopharmacology. nonpharmacological therapies and lifestyle interventions the national institute for health and care excellence (nice) guideline published in june regarding the assessment and manage- ment of dementia has a section on managing noncognitive symptoms [ ]. it suggests con- sidering psychological treatments for people with mild-to-moderate dementia who have mild-to-moderate depression. per these recom- mendations, antidepressants should not be routinely offered unless they are indicated for a preexisting severe mental health problem. good clinical practice requires the use of nonphar- macological approaches for nps, including depression, before the initiation of pharmaco- logical interventions [ , ]. nonpharma- cological therapies that specifically target depression or its symptoms include emotion- oriented therapies, brief psychotherapies, and sensory-stimulation therapies. regardless of the specific therapy chosen, it is advised that these be used as an acute and short-term intervention [ , ]. emotion-oriented therapies emotion-oriented therapies aim to fit the ther- apy to the emotional needs of people with dementia by utilizing approaches such as vali- dation, reminiscence, reality, and simulated- presence therapy. reminiscence therapy uses memory aids such as old family photos and personal objects while encouraging patients to talk about their pasts [ ]. reality-orientation therapy hypothesizes that confusion can be reduced by giving repeated orientation clues, such as the date, time of day, season, or names. it is based on the theory that the inability to orient one’s self reduces the ability of those with dementia to function. validation therapy adopts the concept that cognitively impaired individuals withdraw to an inner reality based on emotions, rather than trying to face the challenges of their faltering cognitive abilities. the therapist accepts the subsequent disorien- tation of the patient and validates his or her feelings, providing a background for meaning- ful conversations addressing their emotions [ ]. simulated-presence therapy involves exposing a patient to audio or videotaped recordings of loved ones [ ]. despite several positive clinical reports of efficacy for these interventions, there is cur- rently insufficient evidence for their effective- ness in reducing any nps, and almost no research providing data on their effects on depression. however, numerous anecdotal and research reports of clinical effectiveness and the patient-centered nature of these individualized therapies suggest that they might yet prove to be of value [ – ]. brief psychotherapies several brief psychotherapeutic interventions have also been shown to be particularly effec- tive in this population [ , ]. behavioral therapies are more commonly applied in the later stages of dementia, while modified cogni- tive-behavioral strategies appear to be more successful with those in the earlier stages of neurol ther ( ) : – cognitive decline [ ]. cognitive behavioral therapy (cbt) requires a period of detailed assessment to identify the triggers, behaviors, and reinforcers (also known as abc: ante- cedents, behaviors, and consequences). their relationships are discussed with the patient. interventions are then based on an analysis of these findings. cbt in ad patients with depression focuses on identifying and reframing negative thoughts and increasing participation in social and pleasurable activities. although cbt is more commonly used with caregivers of patients with dementia than with the patients themselves, a few studies have tes- ted the effects of individual or group cbt on nps, and on depression in particular. teri et al. used cognitive therapy in adults with mild dementia to challenge the patients’ negative cognitions in order to reduce distortions and enable the patients to generate more adaptive ways of viewing specific situations and events [ , ]. most cbt programs for persons with dementia involve their caregivers, both as cbt coaches for the care recipient and as treatment partners who frequently benefit from the intervention as well [ – ]. implementing cbt with persons suffering from dementia requires a highly structured format and con- tinuous monitoring of the person’s under- standing of the therapeutic material. the strongest evidence is for short-term cbt and problem-solving therapy [ ]. sensory stimulation therapies sensory stimulation therapies, including music therapy, art therapy, pet therapy, aromather- apy, activity therapies, and multisensory approaches (such as snoezelen), have the potential for benefit in depressed patients with cognitive impairment. similar to the emotion- oriented therapies, few rigorous studies have been performed, and efficacies are mixed, although reports from clinical observers are generally very positive [ ]. lifestyle modifications other lifestyle modifications, such as an increase in physical activity, may provide additional benefits through nonpharmacologi- cal means. a meta-analysis of eight studies found that moderate daily exercise was effective at reducing symptoms of depression in the elderly [ ]. exercise has also been associated with a decrease in hippocampal atrophy, which is believed to be related to improved cerebral perfusion as well as the release of brain-derived nerve growth factor [ ]. these studies did not exclusively focus on ad, but it is reasonable to extrapolate these results to depression in patients with ad. psychopharmacology recent guidelines for pharmacotherapy in geri- atric patients with depression (table ) have been recommended by the french association for biological psychiatry and neuropsy- chopharmacology and the foundation fon- damental [ ]. pharmacokinetics and pharmacodynamics pharmacological treatment of depression in cognitively impaired patients presents unique challenges due to physiologic changes that accompany normal aging as well as the neu- rodegenerative process itself. significant changes in pharmacokinetics and pharmacodynamics dictate that vigilance be exercised to avoid drug–drug interactions and accidental over- doses. the presence of medical comorbidities also influences both the therapeutic and adverse effects of antidepressant medications. hepatic metabolism and renal clearance decrease with advancing age. the decrease in mesenteric blood flow also decreases gastroin- testinal absorption. neurodegenerative changes also lead to decreased production of acetyl- choline as well as a decreased number of cholinergic neurons in the basal forebrain, which leads older individuals to show marked sensitivity to developing anticholinergic adverse effects. given their physical and cognitive frailty, individuals with dementia may be particularly susceptible to the adverse effects of medications; therefore, the old adage ‘‘start low and go slow’’ applies when dosing the elderly. comorbid neurol ther ( ) : – table therapeutic strategies in geriatric depression clinical features first intention second intention contraindications mild to moderate intensity ssri a antagonist snri agomelatine irreversible maoi bupropion association with an atd from the same pharmacological class anticonvulsant ect moderate to severe intensity ssri snri a antagonist imipramine bupropion association with an atd from the same pharmacological class anticonvulsant first-generation antipsychotic severe cognitive impairments ssri snri a antagonist agomelatine severe psychomotor agitation ssri a antagonist snri potentiation with aap bupropion tianeptine irreversible maoi association with an atd from the same pharmacological class severe psychomotor retardation ssri snri a antagonist imipramine ect in association tianeptine bupropion association with an atd from the same pharmacological class first-generation antipsychotic severe sleep disorders ssri a antagonist snri agomelatine tianeptine irreversible maoi bupropion association with an atd from the same pharmacological class severe anhedonia ssri snri a antagonist imipramine agomelatine association with an atd from the same pharmacological class anticonvulsant first-generation antipsychotic neurol ther ( ) : – medical conditions including diabetes, history of falls, renal and hepatic insufficiency, cardiac arrhythmias, and cerebrovascular risk factors should all be considered before initiation of pharmacotherapy. it is also important to note that the patient’s cognitive limitations may affect their ability to communicate regarding the emergence of adverse effects. hence, close mon- itoring by the prescriber and caregivers is indicated. use of antidepressants in patients with dementia antidepressants are frequently prescribed for the treatment of depression in patients with dementia. the practice guidelines issued by the work group on alzheimer’s disease and other dementias of the american psychiatric association recommend selective serotonin reuptake inhibitors (ssris) as the first pharma- cological treatment of choice for depression in dementia [ ]. ssris tend to be better tolerated than other antidepressants because they have fewer serious adverse effects. the work group suggests that if patients with dementia cannot tolerate higher dosages when needed for the remission of depression, trials of alternative antidepressants such as bupropion, venlafaxine, and mirtazapine may be considered [ ]. the evidence regarding the efficacy of these agents, however, remains conflicting. reviews of research on the pharmacological treatment of nps in general [ , , ] indicate positive effects of various antidepressants (including sertraline, fluoxetine, citalopram, trazodone, and moclobemide) on depression in patients with dementia, with citalopram and sertraline being the most commonly prescribed [ – ]. case reports and small pilot studies indicate that other antidepressants, including trazodone, buspirone, and mirtazapine, may improve depression in patients with dementia, but no large trials have been performed in individuals with dementia to date [ , , ]. lyketsos et al. examined depressive symp- toms using the csdd in a -week double- blind, placebo-controlled trial of sertraline. the results were encouraging and indicated that sertraline had a clear advantage over placebo, table continued clinical features first intention second intention contraindications psychotic symptoms snri potentiation with aap ssri a antagonist imipramine ect in association tianeptine irreversible maoi bupropion association with an atd from the same pharmacological class high suicidal risk ssri snri a antagonist imipramine ect in association potentiation with aap tianeptine bupropion association with an atd from the same pharmacological class first-generation antipsychotic data adapted from [ ] aap aap gene, atd antidepressant, ect electroconvulsive therapy, maoi monoamine oxidase inhibitor, snri dual serotonin and norepinephrine reuptake inhibitors, ssri selective serotonin reuptake inhibitor neurol ther ( ) : – with the bulk of the antidepressant effect seen in the first weeks after starting therapy. improvements were also noted in activities of daily living, but no significant effect was noted in cognition [ ]. lyketsos et al. expanded this study with a larger group recruited from two different sites. once again, the results demonstrated sertraline as being superior to placebo at weeks. in addition, the researchers noted improvements in activities of daily living as well as non-mood behavioral disturbances. the improvement in activities of daily living, as well as non-mood behavioral disturbances, lagged behind the improvement in depressive symptoms. the improvement in symptoms was hypothesized to be due to an improvement in depression, rather than being a direct response to sertraline. it was also noted that there was no improvement in cognitive functioning [ ]. the depression in alzheimer’s disease study (diads)- work group [ , ] continued to investigate the role of sertraline in treating depression in ad, publishing data collected at weeks and again at weeks. neither of these demonstrated sertraline as being superior to placebo. they did agree that the previously proposed dose range of – mg a day was safe and appropriate. an analysis by dudas et al. [ ] of the findings from these three studies [ , , ] indicated overall little or no benefit from treat- ment with an antidepressant (md - . points, % ci - . to . ; participants; studies). one landmark study [ ] examined mg sertraline or mg mirtazapine per day versus placebo. decreases in depression scores at weeks did not show a statistically significant difference between patients receiving mirtaza- pine or sertraline versus placebo. it was con- cluded that the overall effectiveness of antidepressants in patients with ad is small. however, a meta-analysis trended toward treat- ment response; hence, the possible clinical advantages of antidepressants could not be fully ruled out [ ]. effect of antidepressants on cognitive decline more recent studies have focused on dulox- etine, vortioxetine, and brexpiprazole. vortiox- etine demonstrated a significant positive improvement in cognitive function compared to placebo [ ]. brexpiprazole, when used as an adjunctive agent in an open-label safety and tolerability study ( weeks), was shown to be well tolerated in elderly patients, with improvements noted in depression and social functioning. earlier studies gave conflicting results regarding efficacy, safety, and effects on cogni- tive function. most of the existing studies dif- fered in study design, rating scales used, and severity of symptoms addressed. only two comparative studies have been published. tar- ango et al. [ ] compared fluoxetine to amitriptyline, and katona et al. [ ] compared paroxetine to imipramine. one of the earliest studies by roth and colleagues in [ ] demonstrated that moclobemide was effective in treating symptoms of depression; however, no improvement in cognitive function was found. in , tollefson et al. [ ] demon- strated the efficacy of fluoxetine versus placebo. however, in , petracca et al. [ ] found that it was not superior to placebo. in contrast, in , nyth et al. [ ] demonstrated that citalopram improved both cognitive and emo- tional functioning in a -week double-blind placebo-controlled trial. tricyclic antidepres- sants were also studied [ , ], and both clomipramine and imipramine were shown to be superior to placebo. clomipramine seemed to lower scores on the mmse. despite incon- clusive data regarding treatment, there was agreement that untreated depression in patients with ad and an impaired level of functioning resulted in increased impairment of quality of life, a higher decline in activities of daily living, an increased likelihood of being discharged from assisted living facilities, an increased like- lihood of needing a nursing home level of care, and increased mortality and suicidal ideations. perhaps the more significant future direction of psychopharmacology is exploring the rela- tionship between antidepressants and progres- sion of cognitive decline. bartels et al. [ ] demonstrated that long-term ssri treatment neurol ther ( ) : – might delay progression from mild cognitive impairment to ad. zhou et al. [ ] observed that fluoxetine delayed the cognitive functional decline and synoptic changes in a transgenic mouse model of early ad. however, the clinical studies published at this time are insufficient to draw conclusions. adverse effects of antidepressants in patients with dementia as noted previously, the selection of a particular antidepressant should encompass the consider- ation of potential adverse effects. ssris include fluoxetine, paroxetine, sertra- line, citalopram, and escitalopram. potential adverse effects of these agents include nausea and vomiting, agitation, anxiety, indigestion, diar- rhea or constipation, dizziness, blurred vision, dry mouth, diaphoresis, loss of appetite and weight loss, insomnia or sedation, headaches, and sexual adverse effects. however, these drugs have less marked anticholinergic and antia- drenergic properties, and therefore, may be less likely to cause confusion or falls [ ]. both citalopram and escitalopram have been associated with a prolonged qtc interval, par- ticularly if combined with other medications that prolong qtc. the risk also increases when those drugs are combined with medications (e.g., cimetidine, omeprazole) that decrease the metabolism of those drugs, thus raising their serum blood levels. selective serotonergic and noradrenergic reuptake inhibitors such as venlafaxine, desvenlafaxine, and duloxetine, tetracyclic antidepressants such as trazodone and mapro- tiline, and reversible monoamine oxidase inhi- bitors such as moclobemide are alternative options to ssris. another often-used example of the newer antidepressants is the a antagonist mirtazapine. the adverse effect profiles of these medications are similar to that of ssris. the oldest class of antidepressants is the tri- cyclic antidepressants. they are associated with potentially problematic adverse effects for older patients. in particular, their anticholinergic properties are associated with a negative impact on cognition [ ]. other problematic anti- cholinergic effects would include increased intraocular pressure, urinary retention, dry mouth, and constipation. because of their antiadrenergic adverse effects, they can also cause postural hypotension [ ] and dizziness, thereby increasing the risk of fall. in general, this class of antidepressants should be avoided in patients with cognitive impairment. apathy although this review focuses on depression, it is important to understand the distinction between apathy and depression as the underly- ing causes of symptoms, and patients’ responses to antidepressant treatment vary significantly. apathy is characterized by lack of motivation, decreased initiative, akinesia, and emotional indifference. it is the most common nps asso- ciated with ad and a primary cause of caregiver distress [ ]. it frequently emerges in the pre- cognitive impairment stages of ad, increases in frequency as the disease progresses, and predicts conversion from normal cognition to mci and from mci to dementia [ ]. in , an international task force published diagnostic criteria for apathy which require that two of three dimensions of diminished motivation must be present for at least weeks with iden- tifiable associated functional impairment [ ]. the apathy evaluation scale is commonly used to assess apathy across the ad continuum [ ]. the neuropsychiatric inventory also includes an apathy subscale, but it has not yet been validated for use on its own. apathy can occur alone or as a symptom of depression [ ]. in neuroimaging studies, apathy has been associated with cortical dysfunction in the posterior cingulate or inferior temporal cortex. it has also been associated with atrophy, hypo- metabolism, and hypoperfusion in these regions. high levels of tau and phospho-tau in the csf and abnormalities in cholinergic, gabaergic, and dopaminergic function have also been associated with apathy [ ]. dopaminergic circuits have been targeted in treatment trials using methylphenidate, with a significant reduction in apathy symptoms and improvement in global cognition in a -week study [ ]. open-label studies of cholinesterase inhibitors (donepezil, galantamine, and neurol ther ( ) : – rivastigmine) showed improvements in apathy with all three medications [ ]. in the clinical setting, patients suffering from apathy will frequently deny feeling ‘‘de- pressed,’’ and may not endorse the typical symptoms of depression. their caregivers may report that their engagement, motivation, and interest has dwindled and, as a result of these observations, express concerns over their loved one being depressed. conclusion when treating patients with ad, the impact of neuropsychiatric symptoms, particularly depres- sion, on the patients’ quality of life should not be overlooked. diagnosing depression in this patient population can be challenging. thus, additional research and development of assessment tools focused on a geriatric population are needed. neuroimaging may represent a promising avenue toward understanding the complex pathophysi- ologic relationships between dementia and lld, and may support the pursuit of biomarker-driven diagnosis and treatment. additional future research into the pathologi- cal mechanisms of depression and ad will enable a better understanding of these diseases and their relationship, leading to better pharmacological and nonpharmacological treatments. larger clinical trials assessing pharmacological and nonpharmacological interventions are necessary for the development of comprehensive consensus guidelines regarding the treatment of depression in patients with ad. improving interventions for depression in patients with ad can help to decrease disability and improve the quality of life of patients and their caregivers. acknowledgments funding. no funding or sponsorship was received for this study or publication of this article. medical writing, editorial, and other assistance. the authors thank the staff of neuroscience publications at barrow neurolog- ical institute for assistance with manuscript preparation. authorship. all named authors meet the international committee of medical journal editors (icmje) criteria for authorship for this article, take responsibility for the integrity of the work as a whole, and have given their approval for this version to be published. disclosures. dr. burke, dr. goldfarb, dr. bollam, and dr. khokher have no personal, financial, commercial, or academic conflicts of interest. compliance with ethics guidelines. this article is based on previously conducted studies and does not contain any studies with human participants or animals performed by any of the authors. approval from the local institutional review board was not required for this review. data availability. data sharing is not applicable to this article as no datasets were generated or analyzed during the current study. open access. this article is distributed under the terms of the creative commons 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	neural networks 	future of neuroimaging in ad and depression 	sleep and depression 	causes of sleep disruption 	sleep disruption and depression 	biochemical factors in sleep dysfunction 	links among sleep dysfunction, depression, and dementia 	treatment for sleep dysfunction in patients with dementia and depression 	treatment of depression in patients with ad 	nonpharmacological therapies and lifestyle interventions 	emotion-oriented therapies 	brief psychotherapies 	sensory stimulation therapies 	lifestyle modifications 	psychopharmacology 	pharmacokinetics and pharmacodynamics 	use of antidepressants in patients with dementia 	effect of antidepressants on cognitive decline 	adverse effects of antidepressants in patients with dementia 	apathy 	conclusion 	acknowledgments 	references techne ricerca e sperimentazione/ research and experimentation issn online: - | © firenze university press | http://www.fupress.com/techne doi: . /techne- antonella trombadore, marco paolini, dipartimento di architettura, università degli studi di firenze, italia antonella.trombadore@unifi.it marchpaolini@gmail.com recycle norcia - la metamorfosi delle soluzioni abitative temporanee tra permanenza e innovazione abstract. quale è il livello di in-permanenza contenuta nell’idea di transitorietà delle soluzioni temporanee per l’emergenza? quanto queste soluzioni archi- tettoniche rispondono a esigenze di comfort abitativo? quanto dura in italia l’emergenza? si vogliono condividere alcune riflessioni sulla qualità ambienta- le delle strutture per l’abitare temporaneo presentando l’esperienza di ricerca svolta a norcia, in stretta collaborazione con l’amministrazione comunale, in cui è stato analizzato il potenziale di rigenerazione e riconfigurazione dei moduli abitativi pensati e realizzati per rispondere all’emergenza post-sisma. si tratta di una visione ottimistica delle opportunità offerte dalle contraddizioni culturali dell’abitare (permanenza e mutamento), come nuova entusiasmante frontiera del progetto. parole chiave: temporaneità; sostenibilità; metabolismi; antifragilità; reversi- bilità. la ricerca sul rapporto archi- tettura/tempo come fattore va- riabile di progetto scaturisce dalla profonda riflessione riguardo fatti e dinamiche che seguo- no un evento, spesso catastrofico, quale è un terremoto. ponendo l’attenzione sulle aree del centro italia colpite dal sisma del , la ricerca si concentra sulla cittadina umbra di norcia, analizzata nell’ambito di un percorso di ricerca sulla qualità architettonica, sulla sostenibilità ambientale e sociale degli interventi tempora- nei per l’emergenza e le loro potenzialità di rigenerazione. in particolare, il progetto prende avvio e si sviluppa studiando le soluzioni abitative proposte per la fase transitoria di ricostruzio- ne post-terremoto. questo lavoro, condiviso con l’amministra- zione comunale, ha un duplice obiettivo: da un lato rimettere al centro del processo di ricostruzione del territorio i suoi attori, il suo ambiente naturale e la sua identità locale; dall’altro focalizza- re l’attenzione sul post-ricostruzione, analizzando le potenzialità di mutamento e gli scenari di trasformazione delle strutture abi- tative temporanee secondo una visione integrata. si è voluto ri- trovare il valore tangibile sia della metamorfosi rispetto alle di- verse fasi del ciclo di vita, sia delle prestazioni ambientali e tec- nologiche residue di ogni singolo elemento costruttivo in un’ot- tica di recupero e rifunzionalizzazione, con un approccio green e circolare al processo edilizio. questa esperienza, con la parteci- pazione diretta degli abitanti, si innesta in un percorso di ricerca più esteso sul tema della rigenerazione sostenibile dei contesti architettonici fragili, ampliando così l’analisi sulle dinamiche re- lazionali people & place e mettendo l’accento sulle potenzialità di trasformazione dei luoghi: il durevole è il trasformabile. sul pro- getto convergono approcci di esperienze, svolte in ambito nazio- nale ed europeo, che attraverso il progetto “vivimed” hanno evi- denziato come il recupero e la rivitalizzazione dei piccoli agglo- merati urbani dell’entroterra mediterraneo siano dovuti alle loro capacità di interagire con i fattori determinanti della vita econo- mica di un territorio: nuovi modelli di turismo ecosostenibile, salvaguardia del paesaggio e innovazione tecnologica ambienta- le. le aree interne rappresentano un prezioso patrimonio cultu- rale e ambientale in quanto custodi di identità territoriali. una ricchezza molto spesso poco conosciuta fuori dai principali flus- si turistici, talvolta penalizzate dalla carenza di infrastrutture materiali e immateriali, ma ciononostante con un alto potenziale di competitività e crescita. considerare il tempo come quarta dimensione è un valore imprescindibile dalle politiche di ricostruzione post-catastrofe in quanto ritma le fasi di attua- premessa e scenario di riferimento il tempo, quarta dimensione del progetto recycle norcia - the metamorphosis of temporary housing solutions via permanence and innovation abstract. what is the level of in-perma- nence present in the idea of temporary emergency solutions? how much do these architectural solutions meet living comfort requirements? how long does an emergency last in italy? we would like to share some reflections on the en- vironmental quality of temporary housing structures by presenting the research experience carried out in norcia, in close collaboration with the municipal adminis- tration. the study analysed the potential for regeneration and reconfiguration of housing modules designed and built to re- spond to the post-earthquake emergency. this is an optimistic vision of the opportu- nities offered by the cultural contradictions of living (permanence and change) as an exciting new frontier of the project. keywords: temporariness; sustainability; metabolism; antifragility; reversibility. foreword and reference scenario research on the relationship between architecture and time as a variable de- sign factor stems from a deep reflec- tion on the facts and dynamics that fol- low an event, often a catastrophic one, such as an earthquake. looking at the areas in central italy affected by the earthquake, this research focuses on the umbrian town of norcia. the town was analysed as part of a research path on architectural quality, the envi- ronmental and social sustainability of temporary emergency interventions, and their potential for regeneration. in particular, the project starts and devel- ops by studying the housing solutions proposed for the transitional phase of post-earthquake reconstruction. this work, shared with the municipal administration, has the two-fold ob- jective of putting its actors, its natu- ral environment and its local identity back at the centre of the territorial re- construction process, and of focusing on post-earthquake reconstruction by analysing the potential for change and the transformation scenarios of temporary housing structures accord- ing to an integrated vision. the aim was to rediscover the tangible value of both the metamorphosis, with respect to the different phases of the life cycle, and the residual environmental and technological performance of each in- dividual building element, with a view to recovery and re-functionalisation, with a green and circular approach to the building process. with the direct participation of the inhabitants, this experiment is part of more extensive research on the theme of sustainable regeneration of fragile architectural contexts, thus broadening the analysis of people & place relational dynam- ics and emphasising the potential for techne a. trombadore, m. paolini zione di un preciso modello organizzativo e gestionale che si compone delle fasi di emergenza, ripresa, sviluppo e funge da strumento di innovazione della struttura urbana, delle sue rela- zioni culturali con il territorio e dei suoi possibili processi di ri- generazione. riguardo a fenomeni difficilmente prevedibili, i concetti di temporaneità e adattabilità dell’architettura assumo- no un carattere del tutto contemporaneo. infatti, se per esperien- za è noto che gli interventi temporanei incidano spesso negativa- mente sulla qualità funzionale, morfologica, ambientale e pae- saggistica dei contesti in cui si inseriscono, la prospettiva proget- tuale dovrà riguardare anche il nuovo significato di temporalità dell’architettura impiegando il tempo come materiale stesso del progetto. questo significa progettare la città in termini di pro- cessi inerenti a uso/riuso/riciclo, intervenendo nel tessuto della città attraverso tattiche d’innesto progressive e incrementali. essenziale è stato lo studio e la conoscenza della situazione pre e post catastrofe e dei bisogni at- tuali e reali della cittadina (fig. ). tutto questo ha arricchito la fase preliminare svolta in stretta collaborazione con le ammini- strazioni locali e in particolare con il sindaco di norcia. le fasi di gestione dell’emergenza hanno portato ad un’occupazione di vaste porzioni di territorio con strutture provvisorie. la provvisorietà, appunto, è un altro tema che, contestualizzato alle realtà post cata- strofe del nostro paese, assume una valenza assai contraddittoria. le tipologie di struttura provvisoria realizzata in maggior numero sono le sae (soluzioni abitative di emergenza). per quanto si sia cercato di garantirne una certa qualità e un ponderato inserimen- to nel contesto, la qualità architettonica e la mitigazione paesaggi- stica sono debolmente raggiunte. nella piana di santa scolastica (area produttiva) si contano circa sae. si pone una questione cruciale: terminata la fase di gestione dell’emergenza e riconsegna- ti i luoghi alla cittadinanza, in che modo operare il riassorbimento fisico e funzionale degli insediamenti provvisori? partendo da un attento esame dello stato di fatto, la ricerca avanza una proposta operativa e metodologica che prevede lo smontaggio e l’analisi delle prestazioni residue degli elementi tecnologici, esplorando scenari di ricomposizione dei moduli delle attuali soluzioni abita- tive d’emergenza, creando così nuove configurazioni tipologiche e funzionali. l’intervento di riciclo dell’esistente definisce un nuovo paradigma progettuale in cui l’architettura, flessibile ed efficiente, dialoga con le esigenze di un luogo ferito, rimanendo plasmabile per futuri scenari: una risposta pragmatica ad un bisogno reale. in modo puntuale i risultati della ricerca si inseriscono nell’articolato processo di rinascita di un territorio: si è operato innestando l’in- tervento nel metabolismo attuale e futuro della cittadina rispet- tando criteri di fattibilità tecnico-economica e sostenibilità. il ri- schio, altrimenti, è quello di restituire territori con ferite risarcite ma con i segni delle cicatrici, che modificano definitivamente l’im- magine pre-sisma. nel processo progettuale è stata posta l’atten- zione sia alla valorizzazione dell’identità del paesaggio, sia alla partecipazione della popolazione per mantenere alto il senso di appartenenza e di co-design experience. il dialogo e la sinergia con l’am- ministrazione comunale si sono rivelati fondamentali per comprendere tre importanti aspetti: a che punto del processo della fase emergenziale si fosse arrivati, in quale fase di tale processo sarebbe stato opportuno la provvisorietà degli insediamenti il progetto transformation of places –durable is transformable. approaches adopted at both an italian and a european level converge in the project that, through project “vivimed”, have highlighted how the recovery and revitalisation of small urban agglomerations in the mediterranean hinterland resulted from their ability to interact with the determinants of economic life of a ter- ritory by exploring new models of eco- sustainable tourism, landscape protec- tion and environmental technological innovation. hinterland areas are a pre- cious cultural and environmental her- itage as custodians of territorial identi- ties. a wealth very often little known outside the main tourist tracks, some- times penalised by the lack of material and immaterial infrastructures but, nevertheless, with a high potential for competitiveness and growth. time, the fourth dimension of the project considering time as a fourth dimen- sion is an essential value for post- disaster reconstruction policies, as it is the rhythm of the implementation phases of a precise organisational and management model composed of emergency, recovery and develop- ment phases. it acts as an instrument of innovation of the urban structure, its cultural relations with the territory and its possible regeneration process- es. with regard to phenomena that are hard to predict, the concepts of archi- tectural temporariness and adaptabil- ity take on a completely contemporary character. if we know from experience that temporary interventions often have a negative effect on the func- tional, morphological, environmental and landscape quality of the contexts in which they are inserted, the design perspective should also concern the new meaning of temporality of archi- tecture, using time as the material itself of the project. this means designing the city in terms of processes inher- ent to use/reuse/recycling, and having an effect on the fabric of the city itself through progressive and incremental grafting tactics. the provisional nature of the settle- ments the study and knowledge of the pre and post-catastrophe situation and the real needs of the town were essen- tial (fig. ). all this has enriched the preliminary phase carried out in close collaboration with the local admin- istrations and, particularly, with the mayor of norcia. the emergency man- agement phases led to the occupation of large portions of the territory with temporary structures. impermanence is another theme that takes on a very contradictory value, contextualised to the post-disaster realities of our country. sae (emergency housing solutions) are temporary structures made in great numbers. although they have tried to guarantee a certain quality and have carefully considered insertion in the context, architectural quality and landscape mitigation are weakly achieved. there are about sae in the piana di santa scolastica (production area). a crucial question arises: once the emergency manage- ment phase is over and the places have been handed back to the citizens, how can the physical and functional reab- sorption of the temporary settlements be carried out? starting from a careful examination of the state of affairs, the research advances an operational and methodological proposal that provides for the dismantling and analysis of the techne a. trombadore, m. paolini | stato di fatto della cittadina e del lotto di progetto state of affairs of the town and the project site | techne a. trombadore, m. paolini inserirsi con uno scenario progettuale e su quali obiettivi di rivi- talizzazione dell’intera area puntare per orientare la qualità dei processi di rigenerazione e reintegrazione paesaggistica delle strutture provvisorie, generando valore aggiunto per lo sviluppo socio-economico di norcia. È emersa la necessità di migliorare i gradi di connettività alla matrice ambientale tutelando e valoriz- zando le risorse fisiche e naturalistiche esistenti potenziando le attrezzature di livello urbano di servizio alla ricettività e inno- vando i processi per le forme di socialità e di produzione di posti di lavoro. l’intero processo di riuso e rifunzionalizzazione scatu- risce dall’eredità fisica della fase emergenziale. seguendo inoltre le linee guida fornite da p.r.g. (approvato il giugno ) in merito al lotto di progetto situato nella zona nevralgica della cit- tadina, si sono delineate le finalità della ricerca: - rammendo del sistema ambientale: l’impronta planimetrica viene alleggerita rimuovendo un numero considerevole di unità abitative, diradandole maggiormente nella direzione del parco naturale delle marcite, a vantaggio di una riap- propriazione di superfici da parte della zona rurale con un sensibile infittimento del verde delle aree interne al lotto. - connesione rete viaria: ridefinizione dei percorsi (soft mo- bility) per una connessione diversificata (pedonale/ciclabile/ carrabile) al sistema viario esistente e che sia adatto a imple- mentare le opere previste da p.r.g. - priorità riciclo: analisi delle strutture abitative d’emergen- za per l’inserimento di una nuova fase nel ciclo di vita va- lutando le prestazioni ambientali e tecnologiche residue di ogni singolo elemento costruttivo. - incremento prestazionale: gli scenari di scomposizione e aggregazione dei moduli, l’integrazione tecnologica dei pac- chetti di chiusura e le soluzioni planimetriche in relazione alle strategie bio-climatiche danno vita a nuove configura- zioni tipologiche e tecnologiche ad elevata efficienza ener- getica, ad alta flessibilità e alto comfort abitativo. - rifunzionalizzazione dell’area: identificazione di una nuova destinazione d’uso per riattivare il metabolismo della citta- dina. il masterplan propone la realizzazione di un centro di rieducazione/riabilitazione, e nuove strutture ricettive ad uso turistico (norcia prima del sisma disponeva di . posti letto per la ricettività, dopo solamente ). - antifragilità: si risponde a requisiti di flessibilità, adattabili- tà e reversibilità. si creano strutture e funzioni compatibili con il potenziale riciclo e riuso delle sae esistenti. attra- verso la sperimentazione di soluzioni alternative, mediante l’integrazione di materiali naturali e riutilizzabili, si delinea- no possibili scenari di rinnovamento fisico e funzionale del luogo. risposte progettuali nel masterplan si configurano due temi progettuali: - recycled houses; residenze ad elevata efficienza energetica, ad alto comfort abitativo e flessibilità, destinate sia ad un uso turistico-ricettivo sia ad alloggio per clienti e operatori del nuovo centro di rieducazione e riabilitazione ma anche, in caso di sisma, ad uso emergenziale. - restart center; centro di rieducazione e riabilitazione rea- lizzato con moduli delle strutture abitative esistenti, dedi- cato all’accoglienza dei pazienti in terapia post-traumatica/ operatoria, in cui poter svolgere specifiche attività motorie, didattiche, sensoriali e di pet therapy (strettamente legate residual performance of the techno- logical elements, exploring scenarios of recomposing the modules of the current emergency housing solu- tions, thus creating new typological and functional configurations. the intervention of recycling the existing one defines a new design paradigm in which flexible and efficient architec- ture goes hand-in-hand with the needs of an affected area, remaining a flexible option for repurposing future scenari- os: a pragmatic response to a genuine need. the results of the research are part of the articulated process of re- birth of a territory. the intervention was carried out by grafting it into the current and future metabolism of the town, respecting technical-economic feasibility and sustainability criteria. the risk is, otherwise, that of returning territories with compensated wounds but with the signs of scars, which de- finitively modify the pre-seismic im- age. the design process has paid at- tention both to the enhancement of the identity of the landscape and to the participation of the population to maintain a high sense of belonging and co-design experience. the project the dialogue and synergy with the municipal administration proved to be fundamental in order to under- stand three important aspects: which point in the process of the emergency phase had been reached, at which stage of this process would it have been appropriate to fit in with a planning scenario, and on which objectives for revitalising the entire area to orientate the quality of the regeneration pro- cesses and landscape reintegration of the temporary structures, generating added value for the socio-economic development of norcia. the need then emerged to improve the degrees of connectivity to the environmental matrix by protecting and enhancing the existing physical and naturalistic resources, by strengthening the urban level facilities for accommodation and by innovating the processes for forms of sociality and production of jobs. the entire process of reuse and re-func- tionalisation comes from the physical legacy of the emergency phase. fur- thermore, following the guidelines provided by p.r.g. (approved on june ) regarding the project lot located in the heart of the city, the aims of the research were outlined: - mend the environmental system: the planimetric footprint is light- ened by removing a considerable number of housing units, and thin- ning them considerably in the di- rection of the parco naturale delle marcite, to the advantage of a re- appropriation of land by the rural area with significant thickening of the green areas inside the lot; - road network connection: redefi- nition of the routes (soft mobility) for a diversified connection (pe- destrian/cycling/carriage) to the existing road system, a solution that is suitable to implement the works foreseen by p.r.g.; - recycling priority: analysis of emer- gency housing structures for the insertion of a new phase in the life cycle by evaluating the residual en- vironmental and technological per- formance of each building element; - increased performance: the mod- ule decomposition and aggregation scenarios, the technological integra- tion of the closure packages and the planimetric solutions in relation to bio-climatic strategies give rise to techne a. trombadore, m. paolini al contesto naturalistico) con l’assistenza di una qualificata equipe multidisciplinare, realizzando sul territorio un polo di eccellenza (fig. ). abaco degli elementi la nuova configurazione del lotto è il risultato di puntuali in- terventi effettuati sfruttando la natura totalmente reversibile e scomponibile in moduli e sottomoduli delle sae. lo studio di fattibilità tecnica ha riguardato principalmente l’a- nalisi e il conteggio degli elementi strutturali delle sae presenti sul lotto e la loro possibilità di smontaggio e rimontaggio. la natura del sistema costruttivo completamente a secco di queste unità abitative, nate per essere assemblate sul posto, ha permesso di ipotizzare il riutilizzo del proprio telaio strutturale (profilati in acciaio assemblati tramite incastri a bicchiere e bullonature) rendendo possibili eventuali divisioni o addizioni in adiacenza e alzato, in moduli e sottomoduli. le strutture sono state analiz- zate secondo un abaco degli elementi, suddivise sia in base alla tipologia di sae ( m , m , m ) sia in base alla tripartizio- ne base-elevazione-copertura (fig. ). recycle sae riconfigurazione spaziale e funzionale delle sae ottimizzan- do le soluzioni tipologiche e utilizzando le singole componenti tecnologiche. il risultato di tale processo progettuale dimostra come, rimanendo fedeli allo stato di fatto, si migliorano e incre- mentano le qualità fruitive e prestazionali delle strutture senza perdere le caratteristiche di reversibilità. l’operazione di riciclo delle strutture si è articolata in due fasi (fig. ): - la prima fase è servita per la mappatura degli elementi tec- nologici/strutturali di cui si disponeva e delle possibilità di suddivisione dei moduli, in relazione al numero dei posti letto che venivano garantiti. le sae sono formate da telai in acciaio assimilabili, per il loro funzionamento struttura- le, a delle scatole. questo sistema è presente in tutte e tre le tipologie: una scatola centrale (dentro la quale le altre parti hanno trovato alloggiamento durante il trasporto su gomma) funge da base di imposta per le due più grandi (in larghezza) addizionate lateralmente. sono state considerate varie possibili divisioni delle unità in base alle loro superfici: la sae presenta come scheletro un modulo da m di- visibile a metà, la sae è formata da due moduli da m divisibili a loro volta a metà e la sae è composta da due moduli da m . conteggiando i moduli matrice da m e m , si arriva al numero totale di unità per quelli da m e unità per quelli da m (circa posti letto). - la seconda fase è stata dedicata alla riconfigurazione e rias- semblaggio di parte dei moduli per l’ottenimento di nuove tipologie abitative (a, ab, a’b, a’b’). inoltre, gli elementi strutturali (delle sae) in sovrannumero verranno utilizzati per configurare la struttura portante del restart center. moduli abitativi quattro nuove tipologie residenziali, di superficie variabile, ven- gono progettate per rispondere alle diverse esigenze degli utenti. le addizioni dei moduli in adiacenza o in elevato garantiscono un’ottimale distribuzione e fruizione degli spazi interni. tutte le tipologie sono caratterizzate dalla disposizione del blocco ser- vizi nella fascia centrale. questa soluzione ha consentito la rea- new typological and technological configurations with high energy efficiency, high flexibility and high living comfort; - requalification of the area: identifi- cation of a new destination of use to reactivate the town’s metabolism; the masterplan proposes the crea- tion of a re-education/rehabilitation centre, and new accommodation facilities for tourist use (before the earthquake norcia had , beds for accommodation, while there were only after the event). - anti-fragility: meets the require- ments of flexibility, adaptability and reversibility. it creates structures and functions compatible with the potential recycling and reuse of ex- isting sae. experimentation of al- ternative solutions, and the integra- tion of natural and reusable materi- als underscore possible scenarios of physical and functional renewal of the site. project answers two design themes are configured in the masterplan: - recycled houses; residences with high energy efficiency, high living comfort and flexibility, intended both for tourist use and as accom- modation for customers and op- erators of the new re-education and rehabilitation centre but also for emergency use, in case of an earth- quake; - restart centre; re-education and re- habilitation centre built with mod- ules from existing housing struc- tures, dedicated to accommodate patients in post-traumatic/operative therapy; at this site they can per- form specific motor, educational, sensory and pet therapy activities (closely related to the naturalistic context) with the assistance of a qualified multidisciplinary team; hence, it creates a centre of excel- lence in the area (fig. ). abacus of the elements the new configuration of the lot is the result of punctual interventions car- ried out by exploiting the totally re- versible and decomposable nature of sae modules and sub-modules. the technical feasibility study mainly concerned analysing and counting the structural elements of the sae present on the lot, and their possible disassem- bly and reassembly. the nature of the completely dry construction system of these housing units, made to be assembled on site, allowed to hypoth- esise the reuse of its structural frame (steel profiles assembled by tongue and groove joints and bolts), enabling any divisions or additions in adjacent and raised in modules and sub-modules. the structures were analysed accord- ing to an abacus of the elements, divid- ed both according to the type of sae ( m , m , m ) and according to the tripartition base-elevation-coverage (fig. ). recycle sae spatial and functional reconfiguration of the sae by optimising the typologi- cal solutions and using the individual technological components. the result of this design process shows how, re- maining true to the state of the art, the usable and performance qualities of the structures are improved and increased without losing their revers- ibility characteristics. the recycling operation of the struc- tures was divided into two phases (fig. ): techne a. trombadore, m. paolini | concepts dell’innesto del progetto nel contesto concepts of project graft into context | techne a. trombadore, m. paolini - the first phase was used to map the technological and structural elements available and the possi- bility of subdividing the modules in relation to the number of beds that were guaranteed. the sae are made up of steel frames which, due to their structural function, can be assimilated to boxes. this system is present in all three types: a cen- tral box (in which the other parts were housed during transport by road) acts as an anchor point for the two largest (in width), which are added laterally. various possible divisions of the units according to their surfaces have been considered: the sae has as skeleton a m module that can be divided into half; the sae is made up of two m modules that can be divided into half; and the sae is made up of two m modules. counting the m and m matrix modules, there is a total number of units for the m modules, and of units for the m modules (about beds); - the second phase was dedicated to reconfiguring and reassembling part of the modules to obtain new housing types (a, ab, a’b’). in ad- dition, the structural elements (of the sae) in supernumerary will be used to configure the supporting structure of the restart centre. living modules four new residential types, with vari- able surface area, are designed to meet the different needs of users. addi- tions of adjacent or elevated modules guarantee an optimal distribution and use of the interior spaces. all types are characterised by the service block placed in the central band. this solu- tion has made it possible to create an easily inspectable skylight well dedi- cated to water systems, to which all | abaco degli elementi strutturali delle attuali sae abacus of the structural elements of current sae | techne a. trombadore, m. paolini | le due fasi del riuso delle strutture: analisi e riconfigurazione 	 the	two	phases	of	the	reuse	of	structures:	analysis	and	reconfiguration | techne a. trombadore, m. paolini lizzazione di un cavedio, facilmente ispezionabile, dedicato agli impianti idrici, a cui connettere (sia in adiacenza, sia in elevato) tutti i servizi. l’installazione del cavedio si rivelerà fondamentale per la determinazione di un alto livello di flessibilità delle possi- bili configurazioni spaziali e distributive delle residenze. “a” è la tipologia, presente su quattro unità, con la minore super- ficie utile abitabile ( m ), formata dal modulo base di m con addizioni sui fronti sud e nord rispettivamente di mezzo modulo da e mezzo modulo da . “ab”, presente in unità, ha una superficie di m . È compo- sta dal modulo base di m con addizioni sui fronti sud, nord e ovest (o est, in dipendenza dall’orientamento) rispettivamente di mezzo modulo da m , mezzo modulo da m e un modulo intero da m . entrambe le altre tipologie presentano il secondo piano fuori terra. “a’b”, ha una superficie di m e presenta due unità sul lotto. ogni unità è composta da due moduli base di m sovrapposti, con estensioni, per quanto riguarda il piano terra, sui fronti sud, nord e ovest (o est, in dipendenza dall’orientamento) rispettiva- mente di mezzo modulo da , mezzo modulo da e un modu- lo intero da , mentre per il primo piano, l’addizione di un altro mezzo modulo da si localizza sul lato nord. “a’b’”, ha la maggiore superficie: m . sono tre le unità sul lotto. queste si compongono degli stessi moduli della tipologia precedente con un’addizione in più al primo piano lato ovest (o est, in dipendenza dall’orientamento) di un intero modulo da . le nuove residenze sono capaci di rispondere alle future esigen- ze con la possibilità di trasformare la configurazione da turisti- co-ricettiva, ad una possibile emergenziale garantendo lo stesso numero di posti letto realizzati per gestire dell’attuale emergen- za post sisma . rispettando i criteri di totale accessibilità e adattabilità dell’abitazione. particolare attenzione è stata posta nella configurazione della tipologia a’b (fig. ), visto che pre- senta la totalità delle criticità riscontrabili delle nuove residenze. ogni ambiente della residenza è conforme a ogni standard abi- tativo, in relazione all’altezza minima e ai requisiti igienico-sani- tari (decreto ministeriale / / ) nonostante la duttilità di trasformazione della capienza per una possibile nuova configu- razione emergenziale. rigenerazione dell’involucro la definizione delle nuove stratigrafie (chiusura e partizione), si basa sul riciclo dell’esistente in rapporto alle sue qualità residue (fig. ). le nuove soluzioni progettuali prevedono l’incremen- to delle prestazioni delle stratigrafie per il raggiungimento dei requisiti normativi (in riferimento al d.lgs. / ) dei para- metri inerenti a trasmittanza, sfasamento, attenuazione e verifica termo-igrometrica (software_pan . anit). la scelta dei vari strati che compongono l’involucro è stata indirizzata verso mate- riali ad altissima efficienza, totalmente naturali ed ecosostenibili sia per quello che riguarda la materia prima, sia il loro processo di produzione. sono stati raggiunti ottimi standard prestazionali pur mantenendo il vincolo dimensionale dato dagli spessori del- la preesistente struttura in acciaio. strategie bioclimatiche e prestazioni dell’organismo edilizio particolare attenzione è stata dedicata allo studio dei sistemi attivi e passivi per il controllo della qualità ambientale (ieq) e lo sfruttamento delle risorse energetiche naturali, al fine di sod- services can be connected (both ad- jacent and elevated). the installation of the skylight well will be essential to determine a high level of flexibility in the possible spatial and distribution configurations of the residences. “a” is the typology present on four units, with the smallest useful living area ( m ). it comprises the basic module of m with additions on the south and north fronts, respectively, of half a module of m and half a mod- ule of m . “ab”, present in units, has an area of m . it is made up of the basic m model, with additions on the south, north and west fronts (or east, depend- ing on the orientation), respectively, of half a m module, half a m mod- ule and an entire m module. both other types have the second floor above ground. “a’b”, has an area of m and has two units on the lot. each unit is com- posed of two basic m modules superimposed, with extensions, as far as the ground floor is concerned, on the south, north and west (or east, depending on the orientation) fronts of half a -module, half a -module and an entire -module, respectively, while for the first floor, the addition of another -module is located on the north side. “a’b’”, has the largest surface area: m . there are three units on the lot. these are made up of the same mod- ules of the previous type with an addi- tional extension to the first floor on the west side (or east, depending on the orientation) of an entire m module. the new residences are able to meet fu- ture needs with the possibility of trans- forming the configuration from tourist accommodation to a possible emergen- cy shelter, guaranteeing the same num- ber of beds created to manage the cur- rent post-earthquake emergency, and complying with the criteria of to- tal accessibility and adaptability of the house. particular attention has been paid to the configuration of the a’b type (fig. ), since it presents all the critical aspects of the new residences. every room in the residence conforms to every housing standard, in relation to the minimum height and hygienic and sanitary requirements (ministerial decree / / ), despite the flex- ible transformation of the capacity to adopt a new emergency configuration. regeneration of the envelope the definition of the new layers (clo- sure and partition) is based on re- cycling the existing in relation to its residual qualities (fig. ). the new de- sign solutions provide for an increase in the performance of the stratigra- phies to meet regulatory requirements (with reference to legislative decree / ) of the parameters inherent to transmittance, phase shift, attenuation and thermo-hygrometric verification (software_pan . anit). the choice of the various layers that make up the casing has been directed towards highly efficient and completely natural and eco-sustainable materials, both as regards the raw material and their production process. excellent perfor- mance standards have been achieved while maintaining the dimensional constraint given by the thickness of the pre-existing steel structure. bioclimatic strategies and performance of the building organism particular attention has been devoted to the study of active and passive sys- tems for environmental quality con- trol (ieq) and for the exploitation techne a. trombadore, m. paolini | approfondimento della tipologia residenziale a’b deepening on the residential typology a’b | techne a. trombadore, m. paolini of natural energy resources, in order to meet the requirements of ther- mo-hygrometric comfort of indoor spaces. the conditions of the rooms are kept comfortable by controlling the different seasonal thermal loads. every choice, both technological and bioclimatic, has been made to reduce the consumption of non- renewable energy to zero, with the ultimate goal of considerably lowering the energy needs of the building organism and ap- proaching potential self-sufficiency. it was aimed at the architectural integra- tion of photovoltaic panels (thin-film, amorphous silicon) with a production of . kw peak power (user type a’b), ensuring an area of m , more than the minimum m required by cur- rent legislation ( m per kwp). over the course of a year, the system can cover the energy needs of the accom- modation, allowing self-consumption and grid connected exchange. the stratigraphies of the casing have been carried out in relation to the climatic characteristics of norcia and in order to optimise performance. behaviour on the warmest day of the year ( july ) has been analysed as shown by the temperature trend curve. the cal- culation of the phase shift, obtained from the stratigraphic analysis of the vertical closure package, gives us an optimal time of h and m. the heat accumulated during the hottest hours of the day, with a peak of °c at : pm, is transferred to the interior dur- ing the night when the lowest tempera- ture peak occurs, and can be disposed of with a simple exchange of air. this device makes it possible to achieve a good level of thermal comfort in sum- mer, with a positive impact on energy saving. finally, an energy performance certificate has been drawn up on the analysed building in order to indicate its overall energy performance index in relation to the annual primary en- ergy demand. on the basis of all the design choices, the value reached is an annual requirement of . kwh/m | rigenerazione dell’involucro: le nuove stratigrafie envelope regeneration: the new stratigraphies | techne a. trombadore, m. paolini disfare i requisiti di comfort termo-igrometrico degli spazi in- door. si mantengono confortevoli le condizioni degli ambienti controllando i differenti carichi termici stagionali. ogni scelta, tecnologica e bioclimatica, è stata effettuata, oltre che per azzera- re i consumi di energie non rinnovabili, con l’obiettivo ultimo di abbassare considerevolmente il fabbisogno energetico dell’orga- nismo edilizio e avvicinarsi a una potenziale autosufficienza. si è puntato all’integrazione architettonica di pannelli fotovoltaici (a film sottile, in silicio amorfo) con una produzione di , kw di potenza di picco (utenza tipologia a’b) garantendo una superfi- cie di m , superiore ai m minimi previsti dalla normativa vigente ( m per kwp). nell’arco di un anno, l’impianto può coprire il fabbisogno energetico dell’alloggio, consentendo l’au- toconsumo e lo scambio in rete (grid connected). le stratigrafie dell’involucro sono state effettuate in relazione alle caratteristi- che climatiche di norcia e al fine di ottimizzare le prestazioni è stato analizzato il comportamento nel giorno più caldo dell’anno ( luglio ) come risulta dalla curva dell’andamento delle temperature. il calcolo dello sfasamento, ottenuto dall’analisi stratigrafica del pacchetto di chiusura verticale, ci dà un tempo ottimale di h e m: il calore accumulato nelle ore più calde della giornata, con il picco dei °c delle : , viene trasferito agli ambienti interni durante la notte quando si verifica il picco più basso delle temperature e potrà essere smaltito con un sem- plice ricambio d’aria. tale accorgimento consente di raggiungere un buon livello di comfort termico estivo, incidendo positiva- mente sul risparmio energetico. infine, sull’edificio analizzato è stato redatto un attestato di prestazione energetica al fine di in- dicarne l’indice di prestazione energetica globale in relazione al fabbisogno annuale di energia primaria. in base a tutte le scelte progettuali, il valore raggiunto è di un fabbisogno annuale pari a , kwh/m anno che consente di porre l’edificio in classe energetica a (fig. ). il tema affrontato è fortemente rilevante e necessita di contami- nazioni culturali e contributi tecnici multidisciplinari e mul- tiscalari. riciclo non è solo la parola chiave dell’azione progettuale dell’architettura e del de- sign ma un obiettivo da perseguire e raggiungere anche in un processo di valorizzazione e rivitalizzazione di un tessuto urba- no pensato e realizzato in fase emergenziale. se siamo abituati a pensare all’architettura come a una disciplina che produce strut- ture solide e permanenti, o ad associare all’idea di edificio mate- riali massivi e pesanti, ci sorprenderemo nell’immaginare che cosa si può fare sperimentando soluzioni alternative con mate- riali di recupero, proponendo una rinnovata dignità e una mag- giore qualità, in questo caso, delle strutture temporanee. i risul- tati del progetto indicano come sia possibile non solo ristabilire le funzioni e le condizioni pre-catastrofe ma, rimanendo fedeli allo stato di fatto di una complessa situazione provvisoria, incre- mentare le qualità ecosistemica fruitive degli spazi urbani. vari scenari di trasformazione delle sae sono stati formulati e condi- visi con gli abitanti, seguendo dinamiche collaborative per rivi- talizzare l’identità dei luoghi, innescando nuovi equilibri sociali ed ambientali: una risposta architettonica non più statica ma flessibile e mutevole, per trasformare lo spazio in un sistema ca- pace di reagire agli stimoli e alle esigenze dalla sua comunità. i risultati della ricerca hanno un alto potenziale di replicabilità (su implicazioni interdisciplinari/ multiscalari e valorizzazioni future year, which allows the building to be placed in energy class a (fig. ). interdisciplinary/multiscale implica- tions and future enhancements the theme addressed is highly relevant and requires cultural contamination and multidisciplinary and multiscale technical contributions. recycling is not only the keyword in the design action of architecture and design but also an objective to be pursued and achieved in a process of enhance- ment and revitalisation of an urban fabric designed and implemented in an emergency phase. if we are used to thinking of architecture as a dis- cipline that produces solid and per- manent structures, or to associate it with the idea of building massive and heavy materials, we will be surprised to imagine what can be done by ex- perimenting alternative solutions with recycled materials, and by proposing a renewed dignity and a higher quality, in this case, of temporary structures. the results of the project indicate how it is possible not only to re-establish the pre-catastrophe functions and con- ditions but, remaining faithful to the state of affairs of a complex temporary situation, to increase the beneficial ecosystemic qualities of urban spaces. various scenarios of transformation of the sae have been formulated and shared with the inhabitants, following collaborative dynamics to revitalise the identity of the places, triggering new social and environmental balances. this architectural response is no long- er static but flexible and changeable, to transform the space into a system ca- pable of responding to the stimuli and needs of its community. the results of the research have a high potential for replicability (in any area with a similar situation), highlighting the marginal value (economic and technological) and the possibilities of using recy- cled materials in the new typological reconfigurations, guaranteeing high levels of comfort, eco-compatibility and energy efficiency. understanding the dynamics of architecture linked to the variable time is not only a design exercise but one of the main assets to move from a dissipative linear econ- omy to a regenerative circular system for sustainable cities and urban con- texts: creative design explorations to configure in-permanent architectures capable of triggering new spatial dy- namics and of accelerating innovative social contaminations. the new ways of living (fig. ). techne a. trombadore, m. paolini | strategie bioclimatiche e prestazioni del nuovo organismo edilizio bioclimatic strategies and performance of the new building organism | techne a. trombadore, m. paolini ogni area che presenti una situazione analoga), evidenziando il valore marginale (economico e tecnologico) e le possibilità d’uso dei materiali riciclati nelle nuove riconfigurazioni tipologiche, garantendo alti livelli di comfort, ecocompatibilità ed efficienza energetica. capire le dinamiche dell’architettura legata alla va- riabile tempo non è solo esercizio progettuale ma uno degli asset principali per transitare da un’economia lineare dissipativa ad una circolare rigenerativa per città e contesti urbani sostenibili: esplorazioni progettuali creative per configurare architetture in- permanenti, capaci di innescare nuove dinamiche spaziali e ac- celerare contaminazioni sociali innovative. nuovi scenari dell’a- bitare (fig. ). references cerroni, f. 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( ), architettura open source. verso una progettazione aperta, einaudi, torino. | nuove residenze per nuova vita new houses for new life | 	nota 	maria teresa lucarelli, presidente sitda, 	spazi, tempi, architetture. gli elementi del fenomeno costruttivo 	emilio faroldi, 	tempo e architettura 	massimo lauria , riccardo pollo , 	l’architettura: dal tempo dell’uomo al tempo della natura 	ettore rocca, 	le città sono un prodotto del tempo 	stefano della torre, 	architettura e adattamento 	sergio croce, 	il tempo dei terrestri 	teodoro georgiadis, 	da dove vengono le idee 	lorenzo matteoli, 	i tempi delle costruzioni 	lorenzo bellicíni, 	il tempo in villa adriana a tivoli 	the time in villa adriana in tivoli 	verso l’emergenza permanente: design-build-living reversible 	ernesto antonini , francesca giglio , andrea boeri , 	architetture temporanee dentro architetture immobili 	alessandro claudi de saint mihiel, 	il tempo sospeso del processo interrotto: oltre la rimozione, un futuro per l’incompiuto 	maria luisa germanà, 	il fattore tempo nel progetto delle architetture adattive 	attilio nebuloni, 	“living the flexible space”. strategie tecnologiche e spaziali per le nuove forme di abitare 	maria luisa perri drago, 	riuso del tempo in architettura. la pratica del reimpiego di prodotti e componenti edilizi 	massimiliano condotta, elisa zatta, 	siza patina permanenza 	barbara bogoni, elena montanari, 	il tempo della città tra natura e artificio 	elena mussinelli, andrea tartaglia, giovanni castaldo, 	il tempo del processo. tempo versus qualità nell’attuazione del ciclo edilizio 	eugenio arbizzani, carola clemente, 	da durata a service life a un nuovo paradigma di durabilità per la sostenibilità nelle costruzioni 	francesco paolo rosario marino , paola marrone , 	strategie costruttive e valutazioni ambientali per la temporaneità, circolarità e reversibilità 	monica lavagna, andrea campioli, anna dalla valle, serena giorgi, tecla caroli, 	time-based design per l’habitat del futuro prossimo 	anna barbara , ingrid paoletti , 	valutazione della qualità del cronoprogramma per il construction project management 	marco alvise bragadin , kalle kähkönen , 	carattere storico vs adattabilità prestazionale: il caso studio della chiesa dell’autostrada del sole 	paola gallo, 	aggiornamento in corso. strategie di metabolismo urbano: un caso applicativo 	federico orsini, 	la dimensione temporale dei cambiamenti climatici nella progettazione bioclimatica 	giacomo chiesa , jost von hardenberg , 	dimensione operativa della temporaneità abitativa post-disastro e strumenti di controllo tecnico 	roberto bologna, 	recycle norcia - la metamorfosi delle soluzioni abitative temporanee tra permanenza e innovazione 	antonella trombadore, marco paolini, 	costruire in tempo: i cantieri sperimentali della ricostruzione in francia e italia ( - ) 	angelo bertolazzi , ilaria giannetti , 	il tempo del legno nel padiglione di carlo scarpa 	margherita ferrari, 	il tempo del secolo breve. crescita dei valori e deperimento della materia 	stefano francesco musso, giovanna franco, 	nuovi strumenti di gestione della qualità nel tempo per gli edifici storici e monumentali 	roberto di giulio , beatrice turillazzi , andre van delft , oana schippers-trifan , 	manutenzione e service life planning: processualità e interconnessione 	maria azzalin, 	confrontarsi col tempo. unità abitative temporanee in legno per anziani non autosufficienti 	francesca camerin, francesco incelli, massimo rossetti, 	la forma della vita 	the shape of life raw meat-based diets for dogs: survey of owners’ motivations, attitudes and practices research article open access raw meat-based diets for dogs: survey of owners’ motivations, attitudes and practices giada morelli* , sofia bastianello, paolo catellani and rebecca ricci abstract background: the popularity of raw meat-based diets (rmbds) for pets has been increasing in recent years even if the reputed health benefits are mainly anecdotal. a web-based survey was developed to better understand the motivations and habits of owners who decided to feed their dogs rmbds. results: the questionnaire was completed by dog owners, of whom were living with people whose immune system was impaired or weakened. internet was the preferred source of information for more than half of the respondents, and feeding dogs a more natural and healthier diet was the main reason behind owners’ interest in rmbds. about % of the participants completely abandoned commercial pet food and showed marked distrust especially towards the lack of clarity on the ingredients used (n = ). the vast majority of owners interviewed ( %) believed rmbds to be absolutely safe for dogs, and shinier coat, muscle mass gain, and cleaner teeth were the principal improvements seen on their pets. controlling the composition and quality of the ingredients provided to their animals was the main advantage of rmbds for % of the owners, while the main disadvantages were related to the purchase of some components ( %) and the time required ( %) for the preparation of the diet. only % of the respondents relied on veterinarians for rmbd formulation, and a wide variety of feeding regimens and combinations of ingredients was observed. conclusions: as revealed by this study, most owners are unaware of the risks posed by the feeding of rmbds for both animal and human health, and they often rely on questionable sources for advice on pet nutrition. owners see rmbds as a more natural and healthier alternative to commercial pet food even if the actual benefits remain unproven. consulting veterinarians for proper information and board-certified nutritionists for the formulation of complete and balanced rmbds should be promoted. keywords: dog, diet, nutrition, owner, raw, survey background feeding raw meat-based diets (rmbds) to dogs and cats has become a widespread practice in recent years [ , ]. many owners have become supporters of diets for pets prepared with fresh uncooked ingredients like meat, offal, and bones as an alternative to commercial dry or canned pet food, and certain health benefits are frequently reported by owners. despite the increasing popularity of rmbds, few studies have been conducted on the health effects on pets, and the real advantages have not yet been clearly proven [ ]. on the contrary, some undesired consequences of feeding rmbds to dogs and cats have been well documented. firstly, the risk of pets consuming incomplete and unbalanced daily meals is high, given that most recommendations for feeding rmbds published have not been peer reviewed and are not based on the opinion of individuals with proper nutritional expertise [ ]; consequently, the defi- ciency or excess of certain nutrients could give rise to health problems, especially in young animals. secondly, as shown in literature, raw meat and internal organs can be easily contaminated during slaughter, processing or transportation, and often, in fact, test positive for patho- genic bacteria, viruses and parasites [ – ]. the spread of * correspondence: giada.morelli@phd.unipd.it department of animal medicine, production and health, university of padua, viale dell’università , legnaro, pd, italy © the author(s). open access this article is distributed under the terms of the creative commons attribution . international license (http://creativecommons.org/licenses/by/ . /), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated. morelli et al. bmc veterinary research ( ) : https://doi.org/ . /s - - -x http://crossmark.crossref.org/dialog/?doi= . /s - - -x&domain=pdf http://orcid.org/ - - - mailto:giada.morelli@phd.unipd.it http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / zoonotic bacterial pathogens either from contaminated raw meat products or from the feces of pets fed rmbds has been incontrovertibly demonstrated and therefore poses concrete risks to the health of the people hand- ling raw meat products while preparing the diet or simply living in contact with animals consuming rmbds [ – ]. major concerns arise especially for in- dividuals with impaired or weakened immune systems (i.e. children, chronically ill people, elderly people and pregnant women) because such category of individuals is more susceptible to developing foodborne infec- tions [ – ]. the aims of this study were to better determine the motivations and the feeding practices of people who routinely administer rmbds to their dogs. results survey participants the survey permitted dog owners to be self-re- cruited (table ). most respondents were women be- tween to years old ( %, / ). sixty-two households ( %) included one or more individuals whose immune system was either impaired or not yet fully developed, such as children, the chronically ill, the elderly, and pregnant women. canine population thirty-nine dogs involved in this survey were mongrel; the remainder belonged to breeds, of which the most amply represented were labrador and golden retriever, czechoslovakian wolfdog, german shepherd, border collie, akita inu, and australian shepherd; all other breeds accounted for less than % of the dogs consid- ered. as per the national standard, medium and large size breeds prevailed with and dogs, respectively, while dogs were small size and giant size. males and females were equally represented, most of which were intact. the mean dog age was . years old (sd: . ) and ranged from . to . years old. most dogs ( %) had an ideal body condition in their owner’s per- ception. table provides a summary of dog demograph- ics. the majority of the dogs enrolled ( %) was reported to live inside the house all day, while % lived table demographics of survey respondents (n = ) dog owners, n (%) gender male ( ) female ( ) age, years old < ( ) – ( ) – ( ) > ( ) household single ( ) couple ( ) family ( ) other ( ) people at risk in the household children < years old children – years old elderly > years old pregnant women chronically ill none table characteristics of dogs enrolled in the study (n = ) dogs, n (%) gender male ( ) female ( ) neutering status neutered ( ) not neutered ( ) age, years old < ( ) – ( ) – ( ) – ( ) > ( ) weight, kg mean ± sd . ± . median (range) . ( . – . ) body condition (according to owner) underweight ( ) normal weight ( ) overweight ( ) most represented breeds ( out of ) mongrel ( ) golden retriever ( ) czechoslovakian wolfdog ( ) german shepherd ( ) labrador retriever ( ) border collie ( ) akita inu ( ) australian shepherd ( ) morelli et al. bmc veterinary research ( ) : page of indoors only a few hours a day and % lived outdoors all the time. owner motivation and attitude many owners interviewed had chosen diets containing raw products by searching the internet for information ( %, / ) or consulting magazines and books ( %, / ); for some owners, the feeding of rmbds was encouraged by breeders ( %, / ) or veterinarians ( %, / ); owners ( %) gave other answers. the re- spondents were asked to indicate the main reason they chose to provide rmbds to their dogs: % ( / ) said to respect the dog’s carnivorous nature, % ( / ) to improve the pet’s health condition, % ( / ) because commercial pet food had caused problems in the past, % ( / ) because they did not trust com- mercial pet food, % ( / ) because their dog did not eat commercial pet food, and % ( / ) stated another reason. as regards the use of traditional pet food, % ( / ) of the owners completely eliminated commer- cial dry food, while % ( / ) still used it when ne- cessary (e.g. when not at home) and % ( / ) regularly. almost every owner ( %, / ) had had at least one previous experience with commercial pet food and were asked which features were the most undesir- able: respondents ( %) said the scarce information on the ingredients (e.g. origin, quality), ( %) the in- clusion of additives, and ( %) the presence of carbo- hydrates; some owners reported that their dogs were not satisfied because they consumed their meals too fast ( %, / ) or did not like their food ( %, / ); owners ( %) gave other answers; on the other hand, owners ( %) said they liked preparing food for pets and ( %) preferred giving pets fresh ingredients. most owners reported health improvements in their pets, including a shinier coat, muscle mass gain, and cleaner teeth (fig. ). as regards the dog’s behavior, % ( / ) of the owners reported no abnormalities, while the remaining noticed a calmer ( %, / ) or livelier ( %, / ) attitude; no one reported nervous- ness or aggression. almost all respondents ( %, / ) said they con- sider rmbds safe for pets, while only % ( / ) ac- knowledged the possibility of health risks associated with this kind of diet and % ( / ) never raised the issue. additionally, owners ( %) stated that dogs cannot get ill by consuming a rmbd, ( %) that it is possible but no reason for worry, and ( %) had never heard of this possibility; on the contrary, persons ( %) said dogs can get ill by eating rmbd. fifty-five percent of the owners interviewed ( / ) never noticed side effects after eating rmbds, while the remaining % reported mainly diarrhea, constipation, and vomiting (fig. ). owners were also asked if they would refuse the administration of rmbds in certain conditions: ( %) said for puppies, ( %) for senior dogs, ( %) for dogs with health problems, for preg- nant bitches and for lactating bitches ( % each). as the main advantage of feeding dogs with a rmbd, % of the owners interviewed ( / ) reported the total control over the diet and awareness of its compos- ition, while % ( / ) mentioned animal origin pro- teins as principal component and % ( / ) the long time it requires to be eaten by the dog and the animal’s consequent greater satisfaction. only few owners consid- ered good palatability ( %, / ), the absence of carbo- hydrates ( %, / ) or the rawness of the ingredients ( %, / ) as the main advantage, and % ( / ) gave different answers. as main drawbacks, % ( / ) re- ported having to procure certain ingredients, % ( / ) the amount of time required for preparation, % ( / ) the cost, % ( / ) the risk of bone ingestion, % ( / ) the dog’s loss of appetite with some ingredi- ents, and % ( / ) diarrhea or vomiting. further dis- advantages were reported under the “other” options ( %, / ), among which prevailed the difficulty of feeding the dog a rmbd when the animal is looked after by someone else and the large space occupied by the in- gredients stored in the refrigerator. owner practices and rmbd formulation most rmbds were formulated by the owners themselves following other people’s advice available online ( %, / ), using nutritional guidelines published in websites or in books ( %, / ), or following no rules ( %, / ). only % ( / ) turned to the veterinarian and % ( / ) to a nutritionist for rmbd formulation, and % ( / ) relied on guidelines provided by online raw meat product sellers; % ( / ) gave other answers. respondent owners affirmed buying raw meat prod- ucts at the butcher shop ( %, / ), at the super- market ( %, / ), at online shops ( %, / ), at the slaughterhouse ( %, / ) or at any of these in- distinctly ( %, / ). figure shows the most com- mon raw meat products used by the respondents. the most frequently purchased meat types were beef, chicken and turkey, while the most common meat parts were skeletal muscle (i.e. minced meat), green tripe, and chicken neck, back and thigh. among the offal, liver and heart were the most widely used. also, % ( / ) of the owners regularly used raw fish, among which sal- mon, sardines and cod prevailed. as regards bones, % ( / ) of the owners gave them to their dogs daily, % ( / ) once or twice a week, % ( / ) rarely, and % ( / ) never. other commonly used animal origin ingredients were eggs ( %, / ), yoghurt ( %, / ), cheese ( %, / ), milk ( %, / ), lard ( %, / ), butter ( %, / ), tallow ( %, / morelli et al. bmc veterinary research ( ) : page of fig. rmbd-related health issues reported by dog owners interviewed fig. health benefits of rmbds reported by dog owners interviewed morelli et al. bmc veterinary research ( ) : page of ) and other ( %, / ). although carbohydrates were generally not used in the diet ( , / ), some reported adding potatoes ( %, / ), bread ( %, / ), rice (regular, %, / ; puffed, %, / ), pasta ( %, / ) or other cereals ( %, / ). owners were also asked whether they used vegetables and fruit, and the answers were not homogeneous. carrots ( %), zucchini ( %), leafy vegetables ( %) squash ( %) and celery ( %) were the vegetables most commonly used, but not on a daily basis (circa once a week) (table ). similarly, the most common fruit were apple ( %), banana ( %) and pear ( %), generally administered as a snack one to four times per month (table ). the owners interviewed were found to use many other ingredients as supplements, among which salmon oil, garlic and linseed oil were the most common (fig. ); only owners ( %) reported supplementing rmbds with a vitamin and mineral supplement, and ( %) said they used no other ingredient or supplement than the ones already mentioned in the questionnaire. mean daily rmbd preparation time was min for owners ( %), to min for owners ( %), a b c d fig. the most common meat (a), anatomical parts (b), offal (c) and fish (d) purchased by the rmbd-feeders interviewed table vegetables used by participating dog owners (n = ) never rarely ( – times/month) once a week often ( – times/week) daily artichokes beans bell peppers cabbage carrots celery eggplant green beans leafy vegetables peas squash zucchini table fruit used by participating dog owners (n = ) never rarely ( – times/month) once a week often ( – times/week) daily apple apricot banana citrus fig melon peach pear pineapple strawberry watermelon morelli et al. bmc veterinary research ( ) : page of to min for owners ( %) and to min for one owner ( %); owners ( %) stated they were unable to quantify the time spent on rmbd preparation, whereas ( %) simply waited for frozen prepacked rmbds to defrost. discussion despite the growing popularity of rmbds in recent years, few studies have been conducted to gather infor- mation on the motivations and habits of people who choose to feed their pets raw meat. information col- lected in this survey shows that dogs fed rmbds had a common profile: they were mainly intact, young, and belonged to medium and large size breeds. the most relevant demographic data gathered on the owners inter- viewed was that % lived with pregnant women, young children, or older adults and chronically ill people. such individuals are at greater risk of developing foodborne illness and should therefore minimize the handling of undercooked or raw meat products that are commonly contaminated by a variety of pathogens [ – ]. also, ani- mals fed raw food diets may be a potential cause of ill- ness in susceptible people due to the environmental shedding of zoonotic pathogenic bacteria and parasites [ , ]. interaction with all family members is inevitable, given that the majority of the respondents’ dogs was re- ported to live inside the house all day; therefore, the feeding of rmbds should be reconsidered in households with individuals at risk. the consumption of raw meat, in fact, has been strongly discouraged for dogs enrolled in pet therapy programs and interacting with people having compromised immune systems [ ]. bearing in mind that rmbds may have a negative impact on both pet and owner health, the veterinarian’s role in the nutritional education of the client should not be underestimated. most of the respondents affirmed relying on informa- tion sources other than veterinarians and, according to other surveys [ – ], an important percentage of owners consult websites to learn how to feed pets nowadays. this is especially true for owners who do not feed com- mercial pet food owing to their distrust in the veterinar- ian’s nutritional expertise [ , – ]. this could lead to misinformation on the appropriateness of rmbds, their virtues and safety, because content available in websites, books and magazines may be biased by the author’s opinion and level of scientific background. promoting the importance of consulting a veterinarian and greater dissemination of the proven health implications of rmbds in the mass media could help pet owners to make more informed science-based decisions [ ]. how- ever, although the majority of veterinarians adopt a crit- ical stance towards the practice of raw feeding, % of the respondents reported contacting veterinarians in favor, in demonstration of the fact that the profession is di- vided – albeit unevenly – on the issue of feeding pets raw meat [ ]. the main reasons that respondents switched to a rmbd for their pets are evenly distributed instead: ) to respect the dog’s ancestral carnivorous nature, ) to give the dog a healthier diet, ) to avoid commercial pet food. these three principles were also significantly adopted by rmbd-feeding owners surveyed in previous studies [ , , ]. providing a diet that mimics the one that wild, non-domesticated dogs ate before their evolution into pets is popular rationale in owners who support fig. the most common ingredients used as supplements by the rmbd-feeders interviewed morelli et al. bmc veterinary research ( ) : page of rmbds. in our opinion, rmbds clearly resemble the wolf ’s diet more closely than kibbles, and this meets the dog’s behavioral needs, which are seriously taken into account by owners. from a nutritional point of view, however, it must be borne in mind that the do- mestication of the dog implied genetic modifications that enabled its metabolism to differ significantly from its ancestor’s: the modern dog’s clearly demon- strated ability to digest starch is a good example [ ]. therefore, although feeding rmbds for the behavioral aspect sounds reasonable, reducing owners’ preference for this type of diet to merely a way of excluding car- bohydrates may be simplistic. moreover, the choice of feeding a rmbd also implies accepting certain fea- tures (e.g. ingredient contamination and bone con- sumption) that may not be optimal for pet dogs living in a home environment [ ]. the second main reason for switching to rmbds, improving the pet’s health, was also cited by the persons interviewed by morgan and colleagues [ ]. despite the owners’ firm opinion, however, the reputed health and therapeutic benefits of raw diets are mainly anecdotal and suffi- cient scientific validation has yet to be made [ ]. lastly, owners feeding noncommercial diets firmly support the nutritional superiority of rmbds over commercial pet food, about which they generally tend to have more concerns and misgivings [ ]. in fact, even if one out of five owners interviewed continued using commercial dry pet food (more or less regu- larly) due to its convenience, most abandoned it per- manently. whether some owners used wet pet foods or cooked meats along with the rmbd was not in- vestigated. undeniably, pet food does not always allow clear identification of its ingredients and has been the target of scandals (e.g. melamine inclusion, contamin- ation, fraud) [ ]. the scarce information provided on the ingredients used and the inclusion of additives such as preservatives and colorants were, in fact, the most displeasing features of commercial pet food re- ported in our survey. in this respect, the possibility for owners to feed their dogs meals prepared with unprocessed fresh ingredients is a reasonable point in favor of rmbds. however, it is difficult to compare the safety and quality of pet food and rmbds be- cause the latter have a more limited market and lack rigorous quality controls, and their associated illnesses probably go unreported and therefore underrated [ ]. the most common health benefits reported here were shinier coat, muscle mass improvement, and cleaner teeth. at present, only one recent study by marx and colleagues [ ] demonstrated that daily supplementation with raw bovine bones (i.e. bovine raw cortical bone from femur diaphysis) reduced the amount of dental cal- culus up to . % after days in eight beagle dogs; unlike other studies [ – ], teeth fractures were not re- ported. as already discussed however, the abovemen- tioned benefits remain unproven and future studies are needed to clarify the positive aspects of feeding pets rmbds. on the other hand, % of the owners inter- viewed reported health concerns related to feeding a rmbd (gastrointestinal signs were the most common), even if the vast majority ( %) had previously declared rmbds safe. the failure to recognize that the consump- tion of rmbds may be a risk factor for the development of illness in pets was also reported by connolly and col- leagues [ ], who found that % of the dog breeders interviewed disagreed with such statement. owners should be counseled on the safety risks resulting from feeding rmbds because many cases of pet foodborne disease and other health issues have been reported in lit- erature [ ]. also, very few respondents said they would avoid administering rmbds to puppies, ill dogs, and pregnant or lactating bitches. nutritional imbalances are very common in this type of diet [ , ] and the effects of prolonged administration could be more detrimental in young or sick dogs; furthermore, similarly to as in humans, dogs with impaired immune systems could show a decreased resistance to pathogens that leads to the development of foodborne illnesses. the biggest advantage of rmbds ( % of the answers) appeared to be the total control the owner has over the pet’s diet obtained by procuring its ingredients autono- mously. surprisingly, very few people named highly popular rmbd features like palatability, absence of grains, or rawness of the ingredients as a main advan- tage. the reasons why owners feeding rmbds favor raw over cooked home-prepared diets should be better inves- tigated, and studies comparing the benefits of one versus another would help understand whether such preference is correctly motivated. it appeared that even if owners grant highest priority to their management of the rmbd, ingredient collection and preparation time were indicated as the main drawback rather than health risks to the dog. the present study revealed that only % of the persons interviewed had asked a veterinarian or a nutrition-trained expert for advice on formulating a rmbd. most owners created their own recipes following other peoples’ advice or guidelines available online or in books and magazines. this should be discouraged, because some studies [ – ] have shown such published recipes of home-prepared di- ets for dogs and cats to have multiple nutritional imbal- ances (i.e. to % of the recipes analyzed failed to meet all essential nutritional requirements for the target animals). more specifically, two other studies demon- strated most self-formulated home-prepared rmbds to be nutritionally inadequate, and multiple mineral and vitamin imbalances (especially for calcium, phosphorous morelli et al. bmc veterinary research ( ) : page of and vitamin d) were shown in respectively and % of the recipes considered [ , ]. furthermore, a minority of the owners we surveyed ( %) said they followed the feeding instructions provided on the labels of the com- mercial rmbds they purchased. it must be noted however that even if the labels claim they meet the requirements for growth, reproduction, and maintenance [ ], commer- cially available rmbds also have significant mineral and vitamin imbalances. the long-term consumption of nutri- tionally incomplete and unbalanced diets could result in severe concerns to canine health, especially in young indi- viduals. taylor et al. [ ] reported vitamin d–dependent rickets and suspected nutritional secondary hyperpara- thyroidism in an -month-old shetland sheepdog con- suming an incomplete and unbalanced home-prepared rmbd. moreover, the fact that only owners declared using a mineral and vitamin supplement might suggest that most rmbds prepared by the participants were in- complete and unbalanced. as already argued by connolly and colleagues [ ], the low frequency with which pet owners and breeders consult board-certified nutritionists is quite concerning. other health issues associated with the composition of rmbds have been reported along with nutritional deficiencies. köhler and colleagues [ ] de- scribed dogs showing elevated serum thyroxine values, six of which developed clinical signs of hyperthyroidism due to the inclusion of raw beef gullet with thyroid tissue; thyroxine concentrations returned within the reference range in all dogs after changing the diet [ ]. again, many cases of fractured teeth and gastrointestinal obstructions or perforations were reported following the consumption of rmbds containing bones [ – ], and this survey showed that % of the dogs received bones regularly. it is noteworthy that % of the participating owners ordered rmbd products via internet. online purchase of pet food has become very popular in recent years, and particular care should be taken with fresh raw prod- ucts because they should be handled with scrupulous hy- giene criteria and require the cold chain to remain uninterrupted. moreover, the risk of microbiological growth increases due to the probability of higher tem- peratures during transport [ ]. regarding ingredients, beef and poultry were the meats most commonly in- cluded in rmbds, and offal were found to comprise an important part, as % of the owners used them regu- larly, especially liver and heart. other common ingredi- ents were green tripe, probably due to its attributed probiotic property, and animal origin protein sources like fish, egg, and yoghurt. fruits and vegetables were shown to play a marginal role, and carbohydrate sources were not very common despite a mild preference for po- tatoes. interestingly, garlic was seen to be popularly used as a supplement despite the fact that evidence of its tox- icity has been documented [ ]. the present study had certain limitations. although the online survey was an efficient approach to directly target pet owners feeding rmbds, electronic recruit- ment through a social media site may have led to an un- der-representation of people who did not use such resources. additional studies are needed to determine whether the feeding practices and motivations investigated in this study are representative of all rmbd-feeding dog owners in italy and other countries. conclusions dog owners’ growing interest in rmbds appears to be mainly motivated by the intention to feed their animals a more natural and healthier diet. the benefits derived from the administration of raw foods that owners commonly report must be verified by future studies. whereas the search for a feeding regimen alternative to commercial pet food is defensible, choosing a diet that puts both animal and human health at risk should not be encouraged. as revealed by this study, most owners underestimate the risks posed by feeding rmbds and often rely on questionable sources such as the internet to gather information on pet nutrition. public health agencies need to become more aware of the popularity gained by rmbds and emphasize the educational role of the veterinarian, whose consultation may help owners make better-informed decisions for their pets and them- selves. referral to a board-certified nutritionist for the formulation of complete rmbds that avoid long-term nutritional imbalances should be promoted as well. methods participant recruitment and survey design in order to recruit owners who feed their dogs rmbds, a web-based survey in italian language was created using an online survey tool (google forms). the online ques- tionnaire was piloted among the authors before its launching on the web but the results of this test were not included in the analysis. the link to the open survey was shared through groups of rmbd-feeding dog owners on a social media website (facebook) for weeks between september and october and no individ- uals had access later in the questionnaire period. al- though the survey was intended solely for people who feed rmbds to their dogs, no other exclusion criteria were fixed. the respondents came from a convenience sample of owners who saw the online link and freely volunteered to participate in the study. the questionnaire contained closed questions ( of which were mandatory, only one was optional) and was divided into three sections. in the first section, in- formation on the owner (personal and household data) was collected; in the second, the dog’s signalment (breed, age, sex, body weight, health status) was entered; the morelli et al. bmc veterinary research ( ) : page of third part of the survey queried dog owner attitudes re- garding rmbds. more specifically, the questions in the final section were intended to determine the motivations for the feeding of rmbds, the effects on the dog per- ceived, the level of awareness of associated risks, the positive and negative aspects of handling a rmbd, and details on formulations and ingredients. no approval by an institutional review board was re- quired because enrollment was on a voluntary basis and the participants consented to anonymous information collection. survey participants were instructed that only one member of a household should complete the question- naire and that every respondent could be responsible for just one dog. all data were checked to verify that no multiple en- tries from the same individual were included. this was done by comparing respondents’ variables (such as time of submission, postcode area, gender, age etc.). the study was open to italian-speaking owners, but no re- spondents were excluded because their postcode or hometown were outside italy. respondents were not allowed to submit incomplete questionnaires, which were automatically deleted without being recorded. the translated survey is available as a supplementary material (additional file ). data analysis the data collected from the survey were transferred into a spreadsheet (excel, microsoft) and submitted to de- scriptive analysis. additional file additional file : translated survey. this document provides the questionnaire translated into english. the questions were numbered sequentially, from number to , and were divided into three sections ( – : information about the owner; – : dog’s signalment; – : dog owner’s attitudes regarding rmbds). if multiple answers were possible, this was specified in brackets after the question. (docx kb) abbreviations rmbds: raw meat-based diets; sd: standard deviation acknowledgements not applicable. funding no special funding was needed for this study. availability of data and materials the datasets analyzed during this study are available from the corresponding author on reasonable request. authors’ contributions gm: support data analysis and preparation of manuscript. sb: design of questionnaire, questionnaire promotion, data management and data analysis. pc: design of questionnaire and data analysis. rr: planning of the study, design of questionnaire, support data analysis and preparation of manuscript. all authors read and approved the final manuscript. ethics approval and consent to participate no ethics approval either within national or eu legal systems was needed for such procedure as enrollment was on a voluntary basis and the participants consented to anonymous information collection as per italian data protection code - legislative decree no. / . interviewees agreed to participate in the study voluntarily by self-enrolling. they were informed that their answers would be published in a study. by completing and returning the survey, they agreed to the inclusion of their data. consent for publication not applicable. competing interests the authors declare that they have no competing interests. publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. received: february accepted: february references . waters a. raw diets: are we at a turning point? vet rec. ; : . . van bree fpj, bokken gcam, mineur r, franssen f, opsteegh m, van der giessen jwb, lipman lja, overgaauw pam. zoonotic bacteria and parasites found in raw meat-based diets for cats and dogs. vet rec. ; : . . freeman lm, chandler ml, hamper ba, weeth lp. current knowledge about the risks and benefits of raw meat–based diets for dogs and cats. j am vet med assoc. ; : – . . hinney b. the trend of raw meat-based diets: risks to people and animals. vet rec. ; : – . . lejeune jt, hancock dd. public health concerns associated with feeding raw meat diets to dogs. j am vet med assoc. ; : – . . finley r, ribble c, aramini j, vandermeer m, popa m, litman m, reid-smith r. the risk of salmonellae shedding by dogs fed salmonella-contaminated commercial raw food diets. can vet j. ; : . . lefebvre sl, reid-smith r, boerlin p, weese js. evaluation of the risks of shedding salmonellae and other potential pathogens by therapy dogs fed raw diets in ontario and alberta. zoonoses public health. ; : – . . morgan sk, willis s, shepherd ml. survey of owner motivations and veterinary input of owners feeding diets containing raw animal products. peerj. ; :e . . laflamme dp, abood sk, fascetti aj, fleeman lm, freeman lm, michel ke, bauer c, kemp ble, van doren jr, willoughby kn. pet feeding practices of dog and cat owners in the united states and australia. j am vet med assoc. ; : – . . freeman lm, janecko n, weese js. nutritional and microbial analysis of bully sticks and survey of opinions about pet treats. can vet j. ; : . . michel ke, willoughby kn, abood sk, fascetti aj, fleeman lm, freeman lm, laflamme dp, bauer c, kemp ble, van doren jr. attitudes of pet owners toward pet foods and feeding management of cats and dogs. j am vet med assoc. ; : – . . connolly km, heinze cr, freeman lm. feeding practices of dog breeders in the united states and canada. j am vet med assoc. ; : – . . rajagopaul s, parr jm, woods jp, pearl dl, coe jb, verbrugghe a. owners’ attitudes and practices regarding nutrition of dogs diagnosed with cancer presenting at a referral oncology service in ontario, canada. j small anim pract. ; : – . . lenz j, joffe d, kauffman m, zhang y, lejeune j. perceptions, practices, and consequences associated with foodborne pathogens and the feeding of raw meat to dogs. can vet j. ; : . . axelsson e, ratnakumar a, arendt ml, maqbool k, webster mt, perloski m, liberg o, arnemo jm, hedhammar a, lindblad-toh k. the genomic signature of dog domestication reveals adaptation to a starch-rich diet. nature. ; : . . cima g. what's in pet food? j am vet med assoc. ; : . morelli et al. bmc veterinary research ( ) : page of https://doi.org/ . /s - - -x . marx fr, machado gs, pezzali jg, marcolla cs, kessler am, ahlstrøm Ø, trevizan l. raw beef bones as chewing items to reduce dental calculus in beagle dogs. aust vet j. ; : – . . rousseau a, prittie j, broussard jd, fox pr, hoskinson j. incidence and characterization of esophagitis following esophageal foreign body removal in dogs: cases ( – ). j vet emerg crit care. ; : – . . gianella p, pfammatter ns, burgener ia. oesophageal and gastric endoscopic foreign body removal: complications and follow-up of dogs. j small anim pract. ; : – . . thompson hc, cortes y, gannon k, bailey d, freer s. esophageal foreign bodies in dogs: cases ( – ). j vet emerg crit care. ; : – . . freeman lm, michel ke. evaluation of raw food diets for dogs. j am vet med assoc. ; : . . dillitzer n, becker n, kienzle e. intake of minerals, trace elements and vitamins in bone and raw food rations in adult dogs. br j nutr. ; :s – . . larsen ja, parks em, heinze cr, fascetti aj. evaluation of recipes for home- prepared diets for dogs and cats with chronic kidney disease. j am vet med assoc. ; : – . . heinze cr, gomez fc, freeman lm. assessment of commercial diets and recipes for home-prepared diets recommended for dogs with cancer. j am vet med assoc. ; : – . . stockman j, fascetti aj, kass ph, larsen ja. evaluation of recipes of home- prepared maintenance diets for dogs. j am vet med assoc. ; : – . . taylor mb, geiger da, saker ke, larson mm. diffuse osteopenia and myelopathy in a puppy fed a diet composed of an organic premix and raw ground beef. j am vet med assoc. ; : – . . köhler b, stengel c, neiger r. dietary hyperthyroidism in dogs. j small anim pract. ; : – . . dave d, ghaly ae. meat spoilage mechanisms and preservation techniques: a critical review. am j agric biol sci. ; : – . . lee kw, yamato o, tajima m, kuraoka m, omae s, maede y. hematologic changes associated with the appearance of eccentrocytes after intragastric administration of garlic extract to dogs. am j vet res. ; : – . morelli et al. bmc veterinary research ( ) : page of 	abstract 	background 	results 	conclusions 	background 	results 	survey participants 	canine population 	owner motivation and attitude 	owner practices and rmbd formulation 	discussion 	conclusions 	methods 	participant recruitment and survey design 	data analysis 	additional file 	abbreviations 	acknowledgements 	funding 	availability of data and materials 	authors’ contributions 	ethics approval and consent to participate 	consent for publication 	competing interests 	publisher’s note 	references the american psychiatric association practice guideline on the use of antipsychotics to treat agitation or psychosis in patients with dementia. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /appi.ajp. . corpus id: the american psychiatric association practice guideline on the use of antipsychotics to treat agitation or psychosis in patients with dementia. @article{reus theap, title={the american psychiatric association practice guideline on the use of antipsychotics to treat agitation or psychosis in patients with dementia.}, author={v. reus and l. fochtmann and a. e. eyler and d. hilty and m. horvitz-lennon and m. jibson and o. lopez and j. mahoney and jagoda pasic and z. tan and c. wills and richard s. rhoads and j. yager}, journal={the american journal of psychiatry}, year={ }, volume={ }, pages={ - } } 	v. reus, l. fochtmann, + authors j. yager 	published 	medicine 	the american journal of psychiatry anagement of behavioral disturbances mand psychosis associated with dementia is a clinical and, in some cases, a medicolegal and ethical challenge for clinicians, caregivers, and health care settings. these medications are associated with multiple adverse outcomes, including serious adverse effects, such as increased risk for cerebrovascular events and mortality. at the same time, clinicians feel pressure from caregivers, acute inpatient staff, and long-term care settings to safely manage… expand view on pubmed ajp.psychiatryonline.org save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations view all figures, tables, and topics from this paper 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table a 	 table b 	 figure b 	 figure b 	 figure b 	 figure b 	 figure b 	 figure b 	 figure b 	 figure b 	 figure b 	 figure b 	 table b 	 figure b 	 figure b 	 figure b 	 figure b 	 figure b 	 figure b 	 figure b 	 table b 	 figure b 	 table b 	 figure b 	 figure b 	 figure b 	 figure b 	 figure b view all figures & tables 	psychotic disorders 	antipsychotic agents 	achyrocline 	independent practice associations 	mental disorders 	agitation 	volition paper mentions blog post risks of antipsychotics for treatment of delirium may outweigh benefits, review finds psych news alert september citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency antipsychotic use in dementia 	j. kirkham, chelsea sherman, + authors d. seitz 	medicine 	canadian journal of psychiatry. revue canadienne de psychiatrie 	 	 	 save alert research feed new antipsychotic drugs for the treatment of agitation and psychosis in alzheimer’s disease: focus on brexpiprazole and pimavanserin 	f. caraci, mario santagati, + authors f. drago 	medicine 	f research 	 	 	pdf save alert research feed management of dementia-related psychosis, agitation and aggression: a review of the pharmacology and clinical effects of potential drug candidates 	m. marcinkowska, joanna Śniecikowska, n. fajkis, p. paśko, weronika franczyk, m. kołaczkowski 	medicine 	cns drugs 	 	 	highly influenced 	pdf 	view excerpt, cites background save alert research feed neuropsychiatric symptoms in dementia: considerations for pharmacotherapy in the usa 	stephanie v phan, sharmon p. osae, j. morgan, mfon inyang, s. fagan 	medicine 	drugs in r&d 	 	 	highly influenced 	pdf 	view excerpts, cites background and methods save alert research feed lack of clinically useful response predictors for treating aggression and agitation in alzheimer's disease with citalopram 	n. herrmann 	psychology, medicine 	evidence-based mental health 	 	 	view excerpt, cites background save alert research feed behavioral and psychological symptoms in alzheimer's dementia and vascular dementia. 	w. deardorff, g. grossberg 	medicine 	handbook of clinical neurology 	 	 save alert research feed neuropsychiatric symptoms in dementia. 	r. radue, art walaszek, s. asthana 	medicine 	handbook of clinical neurology 	 save alert research feed efficacy of antipsychotics in dementia depended on the definition of patients and outcomes: a meta-epidemiological study. 	c. h. smeets, s. zuidema, + authors h. luijendijk 	medicine 	journal of clinical epidemiology 	 	 save alert research feed cost-effectiveness of atypical antipsychotics for the treatment of dementia in thailand 	oranuch thongchundee 	medicine 	 	pdf save alert research feed use of psychotropic agents to treat agitation and aggression in brazilian patients with alzheimer's disease: a naturalistic and multicenter study 	l. f. oliveira, e. camargos, m. g. novaes 	medicine 	psychiatry research 	 	 save alert research feed ... ... references showing - 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social and behavioral sciences ( ) – available online at www.sciencedirect.com doi: . /j.sbspro. . . procedia social and behavioral sciences procedia - social and behavioral sciences ( ) – www.elsevier.com/locate/procedia * mohamed yusoff abbas. tel.: - - ; fax: - - e-mail address: myusoff @salam.uitm.edu.my wcpcg- physical environment: the major determinant towards the creation of a healing environment? mohamed yusoff abbasa, roslinda ghazalib ahead, centre for environment-behaviour studies (ce-bs), faculty of architecture, planning & surveying bpostgradute student, centre for environment-behaviour studies (ce-bs), faculty of architecture, planning & surveying universiti teknologi mara (uitm), shah alam, selangor, malaysia abstract this study explored the the degree of influence of the physical environment in the creation of a healing environment in malaysian pediatric wards. post-occupancy evaluation (poe) studies were conducted eight paediatric wards located in urban and non-urban areas in the klang valley. data collected adopted uk‟s nhs aedet and aspect evaluation toolkits, which evaluated the physical qualities and staff & patients satisfaction levels respectively. those involved authors‟ evaluations, nurses and patients questionnaires respondents, and photographic documentations as supplementary evidences. the findings revealed that the physical environment is not the major determinant in the creation of a healing environment. © published by elsevier ltd. keywords: environment-behaviour relationship; healing environment, paediatric wards, post-occupancy study. . introduction the influence of the physical environment towards human behaviour is well established in the literatures, for example, bechtel & curchman ( ) and cassidy ( ). the degree of influence differed with age, and more markedly upon children than adults (kopec, ). he further revealed that the manner the environment affects younger children varies by circumstances and highly dependent on the children‟s age or stage of development. also, as the paediatric population tended to be more sensitive than adults in the perception of the environment (ozcan, ) it seemed that the quality of the physical environment of the paediatric wards would greatly enhance the creation of a healing environment – an environment created to aid the recovery process. the present paper is one of the outcomes of an ongoing research project which investigated the physical environment of malaysian pediatric wards towards the creation of a healing environment. earlier papers by the same authors reported preliminary (abbas & ghazali, ) and progressive (ghazali & abbas, ) findings of the study. the purpose of the study was to explore the influence of physical environment towards healing. the objectives being three-fold; to chart design trends of malaysian pediatric wards over the last three decades, to identify the degree of influence of the physical environment towards creating a conducive healing environment, and - © published by elsevier ltd. selection and/or peer-review under responsibility of the nd world conference on psychology, counselling and guidance. open access under cc by-nc-nd license. © published by elsevier ltd. selection and/or peer-review under responsibility of the nd world conference on psychology, counselling and guidance. open access under cc by-nc-nd license. http://creativecommons.org/licenses/by-nc-nd/ . / http://creativecommons.org/licenses/by-nc-nd/ . / mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – abbas, m.y. / procedia – social and behavioral sciences ( ) – to identify other components that is supportive towards the creation of a healing environment. the present paper is an extension of the earlier papers which analysed further eight pediatric wards located in the klang valley. an extensive review of the literatures in ghazali & abbas ( ) supported the role of the physical environment towards the creation of the healing environment. it included the conclusion made by the national association of children‟s hospitals and related institutions (nachri) that the physical environment of healthcare settings affected the clinical, physiological, psychosocial, and safety outcomes among child patients and families (oberlin, ). it should be noted that components of the physical environment included also pediatric ergonomics considerations, in particular the independence amongst the pediatric population in taking responsibility for their own health (lueder, ; lueder & rice, ; scanlon, ). in fact, such offer of independence is considered as “the power of the healing environment” (leibrock, ). related to the ergonomically-designed paediatric setting should be safety considerations amongst the paediatric patients (miller & zhan, ; woods et al., ). still related with the physical environment is the role of nature or the creation of therapeutic gardens towards the healing process as reported by several studies such as on garden features (annunziato, ; whitehouse, et al., ) different categories of garden users (sherman, et al., ), play garden - an integration of playgrounds and healing gardens located in a pediatric hospital (turner et al., ). while literatures such as those mentioned above portrayed that the physical environment is the major determinant of a healing environment, there are others who considered other components as important contributions. those included considerations for a more conducive ambience, such as daylight, fresh air and quietness to the environment (berg, ), homelike family environment (moran, ), cultural atmosphere (varni & marberry, ; yox, ; holleran, ) spiritual (higginbotham & todd, ) and ethics (barbara, et al., ). various therapies have also proven to aid healing. those include therapies such as art therapy (mallay, ; eisen, ), music therapy (stewart, ), aroma therapy (bonadies, ), pet therapy braun, et al., ), bibliotherapy (briggs & pehrsson, ; goddard, ) and narrative medicines (launer, ). hence, it seemed that there are other non-physical factors that are of equal importance in contributing towards the creation of the healing environment. as such, perhaps a more holistic approach should be adopted in achieving such an environment more successfully, thus the proposed optimal healing environment (ohe) framework (ananth, ). the ohe, described as “the social, psychological, physical, spiritual, and behavioral components of healthcare support and stimulate the body‟s innate capacity to heal itself” (p. ) involved both the inner and outer environment comprising of seven components as shown in figure . the inner environment comprised three components - developing healing intention, experiencing personal wholeness and cultivating healing relationship, while the outer environment comprised the other four components - practicing healthy lifestyles, applying collaborative medicine, creating healing organization, and building healing spaces. the ohe framework provided a wholesome and inclusive approach towards the healing process. however, both the present authors (of architectural background) opined that the „building healing spaces‟ component, the focus of the present study, required further modification and refinement. the ohe modified version framework proposed, which also formed the framework of the present study is as shown in figure . in the modified model, architecture comprises both interior and exterior environments, with the various influencing factors towards healing being sub - categorised accordingly under those environments. . research design the research design repeated the manner done as was elaborated in detail in (abbas & ghazali, ). briefly, the strategy chosen was the post-occupancy evaluation (poe) upon the additional five more pediatric wards in hospitals in the klang valley, malaysia. to chart the design trend of the pediatric wards, the setting chosen purposely represented hospitals built over the last three decades – s, s and . data collection involved documentation retrieval of patients records; use of uk‟s nhs evaluation toolkits – aedet (achieving excellence design evaluation toolkit) evolution (dh estates & facilities, a) for measuring quality of the physical environment which was evaluated by the authors; and aspect (a staff and patient environment calibration toolkit) (dh estates & facilities, b) for measuring users‟ satisfaction levels. as a supplement to the evaluation mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – abbas, m.y. / procedia – social and behavioral sciences ( ) – tools, photographic documentation of the ambience of the wards and informal unstructured interviews with the hospitals‟ staffs were also conducted. the aedet evolution toolkit, a self evaluation form evaluated three main areas of the physical environment – impact area (character and innovation, form and materials, staff and patient environment, urban and social integration); build quality area (performance, construction and engineering – were not relevant in the present study); and functionality area (use, access, space). evaluations were score-based, with zero being the lowest and six being the highest. as such a score of three/ four would be considered as average, while that of five / six as above average. the aspect toolkit, in questionnaire format to users (staffs and patients‟ carers) evaluated their satisfaction levels based on eight sections – privacy, company and dignity; views; nature and outdoors; comfort and control; legibility of place; interior appearance; facilities for users; and facilities for staffs. evaluations were score-based, similar to aedet evolution. figure . the optimal healing environment (ohe) framework (source: sita ananth, , p. ) figure . author‟s modification of ananth‟s ( ) optimal healing environment framework . findings overall, the data obtained involved eight pediatric wards equally distributed in both urban (u) and non-urban (nu) locations. one was built during the s, four in the s and the remaining three in the s. due to confidentiality, the eight wards and the year built were labeled as kg(u)- , ip(u)- , kj(u)- , pa(u)- , architecture exterior interior garden playground artwork sound ergonomic natural lighting artificial lighting ambience lighting artwork safety art therapy music therapy aromatherapy pet therapy colour outdoor view mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – abbas, m.y. / procedia – social and behavioral sciences ( ) – sg(nu)- , sd(nu)- , ag(nu)- , and sb(nu)- . all the non-urban wards were with beds, while those in the urban areas varied – for kg, for ip, for kj and for pa. . summary of findings: pediatric patients’ records the pediatric patients records retrieved from the eight hospitals were based on the year data. focus of the present study were upon those ages between three to six years old. overall, gender distributed was % boys and % girls, majority ( %) of the patients were malays, and % stayed between the duration of - days, with the longest duration recorded at ip(u)- , followed by sg(nu)- and sd(nu)- . the shortest duration was recorded at kj(u)- , which slightly edged pa(u)- , ag(nu)- , sb(nu)- and kg(u)- as shown in figure . . a) gender distribution b) racial distribution c) length of stay figure . . pediatric patients distribution amongst the eight wards the varied duration of patients‟ stay amongst the wards seemed to suggest of a relationship between a more conducive healing environment with the shorter stay. . summary of findings: aedet evolution analysis based on the aedet evolution evaluation upon the physical qualities of the eight pediatric wards, generally, a positive trend was observed in the last three decades since the s. amongst the most marked positive trends analysed were the staff & patient environment, and space sections. the character & innovation, and form & materials sections seemed to have not stabilised, nevertheless showed improvement in the newest ward. the performance section seemed to have improved only from after being idled over the previous decades. however, those that initially showed a positive trend but somehow declined from were the urban & social integration, and access sections. the use section which had not stabilized showed one of a decline in trend in the newest ward. amongst the eight pediatric wards, the most outstanding with higher scores in all the eight sections analysed was pa(u)- , followed by sd(nu)- as shown in figure . . figure . . the aedet evolution analysis mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – abbas, m.y. / procedia – social and behavioral sciences ( ) – . summary of findings: aspect analysis feedbacks of satisfaction levels on provisions and facilities available from the questionnaire respondents involved in the eight wards were received from an overall total of staffs (nurses) and patients‟ carers. feedbacks requested from staffs involved four main categories (with several criteria per category) - view to outside; nature & outdoor; comfort & control; and staff facilities. feedbacks requested from patients involved the first there categories, with the addition of four more categories – privacy, company & dignity; legibility of place; interior appearance; and facilities for users. results of the findings in the form of colour patterns to indicate their satisfaction levels for the staffs and patients are as shown in figures. . . and . . respectively. from the findings shown in figure . . , it seemed that the overall staffs‟ satisfactory levels was highest for the older kj(u)- hospital and followed by the newer ag(nu)- hospital. while it was not surprising for the oldest kg(u)- hospital to be rated the lowest, most surprising was the newest sb(nu)- hospital given below average rating in three categories – nature & outdoor, comfort & control and staff facilities. similarly, the patients‟ satisfactory levels were highest for not the newest sb(nu)- hospital but rather for the pa(u)- hospital, and then with continuous positive trends for the other newer hospital over the decades in only the three categories – legibility of place, interior appearance, and facilities for users, as shown in figure . . . in comparing the satisfactory levels between the staffs‟ and the patients‟ in the three categories – view to outside, nature & outdoor, and comfort & control, it seemed that overall, the patients were more satisfied than the staffs with the facilities and provisions, although not necessarily in correlations with the ascending years the hospitals were built. . discussion and conclusion it is standard malaysian medical practice to ward pediatric patients between durations of one to five days for medical observation purposes. hence, despite whatever quality of healing environment in supporting the recovery process which existed in a particular ward, a minimum duration of patient‟s five days stay is expected. although the recovery process would depend on the illness of the patient, there might be a possibility of the existence of a relationship between the quality of the healing environment and the duration of stay, as indicated by the varied percentages of the minimum five-days stay amongst the wards. meaning, a shorter patients‟ stay could be the outcome of a more conducive healing environment, a possible hypothesis for discussion. as was shown in the sample of settings for the present study, newer pediatric wards were located in non-urban areas. based on the hospital records, amongst the shortest duration of patients‟ stay were located in both urban and non-urban areas. as such, it can be argued that quality of the healing environment of the wards is not influenced by the location of the wards. amongst the literatures reviewed, the ohe (ananth, ) seemed to be the most wholesome and holistic framework towards the creation of a healing environment. the framework subdivided into seven components took into consideration all aspects of the environment, both the inner and outer environment inclusive. one of the components of the ohe is the physical environment. as revealed earlier, there have been a lot of emphasise in many literatures pertaining to the physical environment being the major determinant towards the creation of a healing environment. if that is true, it could be hypothesized that a shorter patients‟ duration of stay or recovery period is the result of a better quality physical environment, as per the hypothesis proposed. there seemed to be a correlation with this fact as shown by amongst the shorter duration of patients‟ stay in pau(u)- where the aedet evolution score was amongst the highest in all the eight sections categorized. however, kj(u)- which recorded the shortest duration of patients‟ stay, scored much lower than pau(u)- in all sections of aedet evolution. worst still of sd(nu)- which scored amongst the highest in all the aedet evolution sections however recorded also the longest patients‟ duration of stay. hence, based on this contradictory fact alone it seemed that that the quality of the physical environment need not necessarily be the major determinant of a healing environment. mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – abbas, m.y. / procedia – social and behavioral sciences ( ) – fi gu re . . . t he a sp e c t - s um m ar y of f in di ng s (s ta ff s, n = ) k g (u )- ip (u )- k j (u )- pa (u )- sg (n u )- sd (n u )- a g (n u )- sb (n u )- c a te g o r ie s le ge nd : sc or e of & (b el o w a ve ra ge ) sc or e of & ( a ve ra ge ) sc or e of & (a b o v e av er ag e) . choice of bath/shower and assist/unassist. . religious space can take place. . live performances can take place. . facilities to make drinks. . accessible vending machines for snacks. . facilities for relatives to stay overnight. . the interior looks clean, tidy and cared for. . provision for art, plants and flowers. . ceilings are designed to look interesting. . display personal items in their own space. . floors are covered with suitable material. . bathrooms have seats, handrails etc. . obvious to find a staff. . different parts have different characters. . patients’ spaces feel homely. . the interior feels light and airy . variety of colours , textures & views. . staff exclude sun light and day light. . staff can easily control the temperature. . staff can easily open windows/doors . the layout minimises unwanted noise. . the entrance is obvious. . the view outside is interesting. . patients can go outside. . access to landscape area. . easily see plants, vegetation & nature. . staff easily control the artificial lighting. . f ac ili tie s fo r t he u se rs & d ig ni ty of p la ce . patients have visual privacy. . . patients have private conversation . . toilets located conveniently. . patient spend time near the window. . chairs, tables and desks in the patients’ spaces. . artificial lighting for day and night. . patients can be with others. . patients can be alone. . patient easily see the sky. . patient easily see the ground. . the view outside is calming. hospitals . pr iv ac y, c om pa ny . v ie w s . n at ur e . c om fo rt & c on tro l . l eg ib ili ty . in te rio r a pp ea ra nc e k g (u )- ip ( u )- k j (u )- p a ( u )- s g ( n u )- s d ( n u )- a g ( n u )- s b ( n u )- c a t e g o r ie s l eg en d: s co re o f & ( a ve ra ge ) . easy access to basic banking facilities . . staff can easily open windows/doors . the layout minimises unwanted noise. . place to change & store belongings. . places to concentrate on work. . places staff speedily get meals. . easy and convenient access to it. . rest and relax in places segregated from patient. . staff exclude from sun light and day light. . staff easily see the ground. . the view outside is calming. . the view outside is interesting. . patients can go outside. . access to usable landscape area. . staff can easily control the temperature. . easily see plants, vegetation & nature. . artificial lighting for day and night. . staff easily control the artificial lighting. . staff easily see the sky. . v ie w s . n at ur e . c om fo rt & c on tr ol . s ta ff f ac il it ie s hospitals . staff spend time near the window. s co re o f & ( a bo ve a ve ra ge ) s co re o f & ( b el ow a ve ra ge ) fi gu re .. . . t he a sp e c t - su m m ar y of f in di ng s (p at ie nt s, n = ) mohamed yusoff abbas and roslinda ghazali / procedia - social and behavioral sciences ( ) – abbas, m.y. / procedia – social and behavioral sciences ( ) – . discussion and conclusion based on the ohe framework a wholesome social, psychological, spiritual, and behavioral components of healthcare support satisfactions levels amongst users (both staffs and patients) in the wards have direct bearing towards the creation of a healing environment. the users‟ satisfaction levels were measured using the aspect evaluation. based on the evaluation, the most favoured pediatric wards amongst the staffs and patients differed. while the staffs most favoured kj(u)- , it was pau(u)- for the patients. though the choices for the wards differed, however both wards recorded amongst the shorter duration of patients‟ stay. this clearly suggests that a high degree of satisfaction levels amongst users – both staffs and patients inclusive, contributed towards the creation of a healing environment. it can be argued that the evaluations of the scoring for aedet evolution and aspect were done by different evaluators, - the aedet evolution by the authors, while the aspect by the users, hence the possibilities of discrepancies in the scoring. however, there seemed to be some agreement in the evaluation between those different evaluators as both pau(u)- and kj(u)- favoured by both patients and staffs respectively, were also amongst the better wards evaluated by the authors in the aedet evolution analysis. the various therapies mentioned in the review of the literatures were clearly non-existence in all the settings of the study. those were also omitted in both the aedet evolution and aspect evaluation toolkits. since those therapies had been proven to support the healing environment, perhaps both the evaluation toolkits should have been modified to include them. hence, it can be concluded that the creation of a healing environment in paediatric wards do not solely depend on just the seemingly more conducive physical environment. other components, wholesomely acted in tandem. hence it is recommended that the design of future paediatric wards do not just emphasise on the physical environment but also to satisfy other components, such as the social, psychological, spiritual, and behavioral components of healthcare support. suggestion for best practices in the design of newer wards include understanding the behavioural needs of end users and in the provisions of other additional therapies such as art, music, pet, aromatherapy, bibliotherapy, and narrative medicines - in the design brief. acknowledgements this study was made possible by the fundamental research grant scheme (frgs) provided by the malaysian ministry of higher education (mohe) and the continuous support of universiti teknologi mara (uitm), malaysia. special note this paper was developed further from the paper published by the same authors in paediatric wards: healing environment asses sment, asian journal of environment-behaviour studies (aje-bs), ( )january , - ; and healing environment of pediatric wards, procedia - social and behavioral sciences, , , - , elsevier, available online september . references abbas, m.y. & ghazali, r. 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( ), cultural responsiveness improves healing. medscape today, http://www.medscape.com/viewarticle/ . retrieval date: / / . bjgp back pages-master[ ] british journal of general practice, october book review trick or treatment? alternative medicine on trial simon singh and edzard ernst bantam press, hb, pages, £ . , the main conclusions of ernst and singh’s very thorough and clever book are that: • there is no evidence to justify any claim for the specific effectiveness of any except a very few specific complementary and alternative medical (cam) treatments in specific conditions, nor of cam treatments overall; • the perceived benefits are explained by other dynamics of the therapeutic process, particularly the placebo effect; and • these benefits, even if substantial in terms of the patient’s experience, should be disallowed because they are unethical and dishonest; they involve lying to patients about the nature of the treatment. these conclusions are supported by clear discussion of the nature and virtues of evidence-based medicine and the scientific method that underpins it, and an overview of research evidence in cam that demonstrates the absence of effectiveness. many with research experience in this field will argue that this overview is partial and by no means definitive, but my interest in the book is more general. the authors set great store by the pursuit of truth and knowledge, and the role of science in that enterprise. the book is explicitly dedicated to the pursuit of truth, and claims a balanced presentation of the facts in pursuit of the truth of the matter, in this case the validity of cam as a contribution to health care. i applaud that aim. truthfulness is an essential attribute of a therapeutic relationship and an essential attribute of the scholarship that informs clinical practice. but it is in this regard that i am critical of ‘trick or treatment? alternative medicine on trial’. it is full of data about cam, but it does little to advance our knowledge of medicine, particularly our knowledge of its role in human healing. that is disappointing. and although i don’t doubt the authors’ desire for truth, i do doubt their hold on truth. they display great certainty in their pronouncements, but there is a difference between truth and certainty. both are precarious, but those engaged in the pursuit of truth know it. those possessed of certainty often don’t. it takes wisdom and discernment to tell the difference, and on those counts i find this book lacking. the book provides excellent counsel about the shortcomings of cam (and there are many, if you take the whole nebulous field into consideration), and its susceptibility to popular and commercial exploitation. but a recurring lack of truthfulness is the lack of the perspective that would have been provided by relating these to comparable problems in conventional medicine. for example, risk is an ever-present concern in all medicine, and ernst and singh rightly highlight the risks of cam. unfortunately they do not present those risks in relation to the risks of conventional medicine; nor discuss the rarity of the cam disasters they cite. medical risk is direct (harm caused by the intervention), or indirect (harm resulting from neglect of some more necessary or appropriate intervention). in conventional medicine the predominant risk is direct — adverse, for example, drug reactions, anaesthetic or surgical errors. but indirect risk also occurs. a simple example is inappropriately prescribing an antibiotic for a self-limiting viral infection rather than explaining the condition and encouraging an expectant and self-sufficient attitude; compounded by the direct risk of an adverse reaction and the further indirect risk of developing antibiotic resistance. iatrogenic harm from direct risk in conventional medicine is regrettably frequent, and can be fatal. in cam it is very rare. indirect risk in cam is a more serious problem and comparable to indirect risk in conventional practice. this is one example of a lack of truthfulness and balance in the book. if cam lacks compelling evidence of specific efficacy, patients may legitimately prefer it to a treatment of proven efficacy that carries a greater degree of direct risk. more so if the training of the practitioner guards against indirect risk; increasingly the case in the best established therapies. this use of the word ‘efficacy’ points up another evasion. throughout, the word ‘effectiveness’ is used in discussing the lack of positive evidence from formal trials of cam. formal trials usually test efficacy, the ability of an intervention to do what is intended in ideal test conditions. effectiveness is what happens in an actual clinical context. ‘efficacy’ tests narrowly defined specific effects. effectiveness is more relevant to what happens in the real world and really more interesting. trick or treatment? alternative medicine on trial is generally challenging efficacy, not effectiveness. the book disappoints me in other ways that are in a sense a retreat from truth, or timidity in making an adventure in truth, a truly scientific exploration of reality. firstly, its determined exposure of the negatives of cam neglects the positives. surely we cannot be so foolish as to assume that the modern western medical scientific model and paradigm are the whole truth, a complete and sufficient answer to the ills of mankind? in which case we need to enquire, and the proper scientific attitude requires us to enquire deeply into the phenomena that cam describes — insights into the complete dynamics of illness and healing, comprehensively documented in the best cam literature but wholly inadequately researched, that lie outside the frame of reference of the prevailing biomedical model, and that could really enrich knowledge and be a stepping-stone to truth. another disappointment is disregard of the implications of what cam reveals of the power and importance of non-specific and placebo effects; acknowledged on one hand as a strength of the method, and on the other dismissed as a form of trickery. treatments ‘proved’ to be ‘nothing but placebos’ are represented as a deceit practised on the patient by dishonest or lazy doctors. (what about the inappropriate prescribing of conventional drugs?) fortunately this attitude is redressed by the focus on the value of placebo in the edition of the british medical journal that coincided with british journal of general practice, october digest the publication of trick or treatment? alternative medicine on trial. but here the possibility of what might be learned from cam about our ability to stimulate self- regulating and self-healing mechanisms whose pervasive role in medicine ernst and singh acknowledge, is tragically neglected. dismissing the results of the bristol homeopathic hospital clinical outcome study on the grounds of explanations other than the effect of homeopathic medicines (some of which are tendentious and don’t reflect a diligent study of the research paper), they ignore the core fact that for whatever reason many patients with a long and continuing history of significant illness despite conventional treatment did remarkably well. the question is not ‘do cam treatments show efficacy in formal trials’, but ‘do they enhance patients’ whole wellbeing and quality of life?’ and if so how? and by what means can we make better use of whatever is the answer to ‘how’? and what more can we learn about health, illness, and the human condition in the process? surely this should be the agenda of an academic department of complementary medicine? surely its original remit to investigate the scientific basis of cam did not preclude this? surely it was not merely to investigate whether cam can be fitted into the same box as conventional medicine; made to fit the prevailing medical model? to conclude, this book offers a salutary critique of the problems that beset the investigation and integration of cam in relation to conventional medicine, but by a more genuinely truthful and truly scientific examination of its subject it could have enlarged our vision of health care. unfortunately it only serves to perpetuate a kind of scientific tunnel vision. jeremy swayne references . healthwork uk. national occupational standards for homeopathy. bristol: healthwork uk, . . godlee f. reclaiming the placebo effect. bmj ; ( may): doi: . /bmj. . . http://www.bmj.com/cgi/content/full/ / / ?rss= (accessed sep ). . spence ds, thompson ea, barron sj. homeopathic treatment for chronic disease: a -year, university- hospital outpatient observational study. journal of alternative and complementary medicine ; ( ): – . doi: . /bjgp x edzard ernst — a response trick or treatment? alternative medicine on trial is not a book against alternative medicine, it is a book in favour of good evidence and single standards in health care. jeremy swayne admits that ‘truthfulness is an essential attribute’ but criticizes our book for lack of ‘wisdom and discernment’, ‘lack of … balance’, neglecting ‘the positives’ and disregarding ‘the power and importance of non-specific and placebo effects’. he concludes by accusing us of ‘scientific tunnel vision’. these are strong words which require a robust response. using our chapter on acupuncture as an example, we can effortlessly demonstrate that we bend over backwards to present the current evidence as balanced and truthfully as possible. we discuss the history and complexities of clinical trials and the best current scientific evidence in much detail. the truth is that, according to this evidence acupuncture might be effective for some types of pain and nausea. the truth is that even this evidence is not fully convincing (nice recently recommended against using acupuncture for knee osteoarthritis, the flag-ship indication of acupuncturists!). the truth is that it is not free of risks. the truth is that it is expensive compared to many other effective treatments. the truth we present is based on the best available evidence, which means that sometimes we endorse therapies (for example, several herbal treatments) and sometimes we have to be very critical about them (for example, magnet therapy). but swayne does not appreciate this type of truth. why? presumably because, when our truth is applied to his pet therapy, homoeopathy, this form of treatment appears like a sick joke. in his endeavor to promote his type of ‘truth’, swayne wants us to discuss the failings and faults of conventional medicine. we do not deny that these exist. maybe, one day, when we write a book about conventional medicine, we will discuss them in detail. but, writing about alternative medicine, we think it is fair to mention them only in passing. and finally, swayne points to the importance of the placebo effect. but so do we, even in much detail. the difference is that we try to apply just one standard while swayne uses two. the placebo-effect is clearly powerful, thankfully we both agree on that. swayne believes this justifies the routine use of homeopathy and other ineffective treatments. we point out that you don’t need to administer a placebo to generate a placebo response — effective treatments do that too and they convey specific effects as well. the logical conclusion therefore is that, by using pure placebos, we do our patients a grave disservice. so who is suffering from ‘tunnel vision’? we suggest the readers of this debate go to their library, take out our book trick or treatment? alternative medicine on trial and make up their own mind. edzard ernst reference . national institute for health and clinical excellence. osteoarthritis nice version — draft guidance for consultation. nice: london, . http://www.nice.org.uk/guidance/index.jsp?action=d ownload&o= (accessed sep ). doi: . /bjgp x service-learning in gerontology: an out-of-classroom experience educational gerontology, : – , copyright Ó brunner-routledge - / $ . . service-learning in gerontology: an out-of-classroom experience laura hess brown paul a. rood in state university of new york at oswego, oswego, new york, usa service-learning is a useful means of helping students understand gerontology. it allows for the ideal integration of theory, research, and application of the study of aging. students provide m eaningful service to the community, by engaging in direct contact with members of the populations they are studying while integrating course content with real-world experience. students gain additional insight by participating in reýective activities in class discussions; through journal keeping and other writing assignments; and in m eetings with instructors, other students, and professional staff m em bers who provide support and services to the older adults at service-learning sites. in this study, qualitative data on service-learning were obtained from students over two consecutive semesters. content anal- ysis identiüed six them es: (a) insights about aging and older adults, including overcoming negative stereotypes; (b) enhanced feelings of pride, self-worth, and personal efücacy from being able to provide a valued and needed service to older adults in the community; (c) the value and importance of service and vounteering; (d) the realities, both positive and negative, of long-term care for older adults; (e) awareness of previously unrecognized skills and consolidation of future career goals; and (f) integration of course work on aging and service-learning experiences. potential strategies to overcome students’ initial reservations regarding service- learning and to maximize students’ positive experiences with service-learning in gerontology are presented. service-learning is a credit-bearing educational experience in which students participate in an organized service activity that meets a portion of this article was presented at the annual meeting of the association for gerontology in higher education, myrtle beach, south carolina, february . the study reported was part of a larger, ongoing research project funded by the foundation for long term care, albany, new york. address correspondence to laura hess brown, mahar hall, state university of new york at oswego, oswego, new york , usa. e-mail: lbrown @oswego.edu. l. h. brown and p. a. roodin identiüed community needs and actively engages students in reýection to increase understanding of course content, provide broader appreciation of the discipline, and enhance students’ sense of civic responsibility (eyler & giles, ; zlotkowski, ). service-learning is far more than extracurricular voluntary service, but it is not the sam e as a practica or internships, both of which require preparatory skills and hierarchically linked classes that lead to student competence and developm ent of the greater skills and abilities necessary for success. service-learning is a course-based community service experience that produces its best outcomes when meaningful volunteer service is related to course material (zlotkowski, ). eyler and giles ( ) described the holistic nature of experiential education typiüed by service-learning program s: ‘‘experience enhances understanding; understanding leads to more effective action. both learning and service gain value and are transform ed when combined in the speciüc types of activities we call service-learning’’ (p. ). pedagogy in service-learning is designed to meet multiple educational goals (e.g., enhance student insights about citizenship in the community, the discipline they are studying, and the meaning of service) through reýective activities. (rhoads, ). such reýective activities include directed writings, small- group discussions, and class presentations. unlike practica and internships, the experiential activity in a service-learning course is not necessarily skill based within the context of professional education (bringle & hatcher, , as cited in zlotk- owski, , p. xiv). students who have no previous experience working with older adults (or any population to which they have had lim ited exposure) may actually beneüt the most from service-learning in that they have the greatest potential for altering negative stereotypes and clarifying personal identity (neururer & rhoads, ). rhoads ( ) highlighted the advantages of working with diverse others who at the beginning are total strangers to produce outcomes of mutual beneüt, understanding, and potential for greater social good. it is im portant to recognize that service-learning is a particularly salient feature of higher education as it exists today. in their mission statements, many colleges and universities claim to be committed to the processes of learning, searching, and serving. however, it has been only recently that institutions of higher education have become concerned with deüning and documenting the last dim ension (i.e., serving; eyler & giles, ). service-learning has been said to be the ‘‘new mark of excellence’’ and a sign of ‘‘an engaged campus’’ (boyer, , p. a ). it has become a touchstone for institutions seeking to be recognized for their im pact on students and, ultim ately, for increasing students’ sensitivities to and awareness of the im portance of public service and service-learning in gerontology civic responsibility (astin & sax, ; eyler & giles, ; neururer & rhoads, ; rhoads, ; zlotkowski, ). zlotkowski ( ) viewed service-learning as one of the most visible demonstrations of boyer’s ( , p. a ) ‘‘new am erican college,’’ an institution that not only rewards excellence in teaching and schol- arship, but also successfully links thought to action and theory to practice. it may very well be through direct service that educational institutions leave their most enduring im print on their students and their communities; service-learning presents the college or university as a good citizen of the community in which it is located. the goal is that through service-learning students will, on their own, be both more willing to become involved in the lives of others and committed to making a difference in their community (astin & sax, ; neururer & rhoads, ; rhoads, ). recent analyses (astin & sax, ; gray, ondaatje, & zakaras, ; rhoads, ) have suggested that college students who engage in service-learning in fact do show an increase in civic responsibility, im prove the quality of community services through their volunteer efforts, help to bring needed services to a greater number of people, and enhance community – institution relations. astin, vogelgesang, ikeda, and yee ( ) noted signiücant im provem ents am ong students participating in service-learning in academic performance in writing skills, critical thinking, and grade point average as well as increases in leadership and self-efücacy. students participating in service-learning also become more value conscious in that they are committed to prom oting racial understanding, activism , and service following college graduation. it is clear from the work of astin and his associates that positive outcomes from service-learning depend greatly on students’ degree of interest in the course material, the degree to which instructors encourage classroom discussion, and the skill with which instructors link service experience to course content and vice versa (astin & sax, ; astin et al., ). reýection activities are the most widely used and highly recommended methods for providing this linkage between course content and service experiences. more than % of students involved in one study of service-learning responded positively to the statement that their service ‘‘made a difference’’ (astin et al., , p. ). research on student outcomes with service-learning is becoming more plentiful, but most studies have used structured interviews, participant observation, or survey form s (astin & sax, ; neur- urer & rhoads, ), which may have som ewhat lim ited students’ ability and freedom to express their views on their placements or on service-learning in general. few studies have tapped students’ personal reactions to their service-learning experiences in their own words by l. h. brown and p. a. roodin using students’ reýective journals or open-ended question form ats as data sources (rhoads, ). the purpose of the study in this article was to compile students’ free-form reactions to service-learning within the context of gerontology course work to identify im portant and relevant themes. the state university of new york at oswego (suny oswego) has been engaged in service-learning to address a speciüc community need: the social isolation of older adults in this rural community. through grants from the association for gerontology in higher education; generations together/university of pittsburgh, and the foundation for long term care, students have been involved in service-learning activities beginning in . social isolation was identiüed as an unmet community need in surveys from the area agency on aging and by service providers for older adults. although many older adults in the region are isolated from neighbors or fam ily members during the winter months, health care providers and staff members at nursing hom es and assisted- living facilities reported that even during good weather more than % of older adults rarely or never receive even a single visitor during the year. the goal of suny oswego’s service-learning program is to provide both positive beneüts to older adults in need of social contact and worthwhile educational and personal experiences to students. this study addressed the latter goal by assessing students’ percep- tions of their service-learning experiences using (a) inform al discus- sions of students’ reservations about service-learning at the beginning of their placement experiences and (b) qualitative analysis of students’ ünal summaries in their own words at the conclusion of their place- ments. the expectation was that although students’ initial reactions to the idea of participating in service-learning might have been nega- tive and task oriented, their postexperience comments would reýect more positive themes integrating theory and practice in their ‘‘out-of- classroom experiences.’’ method student participants this article summarizes the reactions of undergraduate students ( wom en, men) to service-learning experiences with socially isolated older adults. most students were enrolled in classes with a speciüc focus on aging or gerontology; were enrolled in a basic course in service-learning in gerontology human services and public policy; and were enrolled in an introduc- tory composition course. more than % of the students were juniors or seniors. procedure the type of service activity most often completed by students was friendly visiting with older adults in private hom es or apartm ents, assisted- living facilities, and nursing homes through program s and agencies such as the ymca, the department of social services, meals on wheels, senior nutrition centers, and an osteoporosis prevention program. students also did friendly visiting through such volunteer positions as transportation aides and assistants in a variety of struc- tured program s such as recreation, arts and crafts, pet therapy, movem ent and singing activities, and therapeutic interventions for groups of older adults who were clinically depressed, had experienced a stroke, or had alzheim er’s disease. a total of different placements throughout the community were made available to students. brief descriptions of each placement and student role were distributed in target classes during the ürst week of the spring and fall semesters. students were invited to call to set up a meeting with a contact person at a facility or agency to deter- mine whether a particular placement would match his or her interests, schedule and preferences for activities and service-learning. students were responsible for establishing their visiting schedule, documenting their participation frequency and duration, and obtaining veriüca- tion of service-learning hours from site contact persons. in addition, students were allowed to ünd their own placements if none of the prearranged placements were appealing or convenient. for example, a student could visit an isolated elderly neighbor or acquaintance for his or her service-learning as long as that individual was not a relative. the minim um requirement for service-learning was hours of friendly visiting with socially isolated older adults. this is consistent with recent practices (gray et al., ). however, service-learning was credited in one of three ways, and speciüc requirements were associated with each option (see table ). students participated in service-learning as (a) a three-credit stand- alone service-learning course; a (b) one-credit add- on linked to a traditional three-credit course; or (c) a required component of a regular three-credit course. all students who engaged in service-learning participated in a series of planned reýective activities, which included (a) discussion of their experiences as a regular part of class; (b) classroom lectures and read- ings that encouraged them to highlight issues and concepts from their l. h. brown and p. a. roodin table academic credit options for service-learning course service hr class m eetings papers journals stand-alone course ( credits) linked to traditional course ( credit add-on) required component of regular course (no extra credit for service-learning) service with older adults; (c) directed small- group discussions during class tim e throughout the semester or in addition to regular class meet- ings; (d) weekly journal-writing assignm ents; and (e) assigned short papers dealing with issues pertinent to their placement experiences (e.g., quality of life, economic and social costs of long-term care, public policy and aging). in addition to these planned reýective activities, students were encouraged to discuss issues that arose in their place- ments both during class tim e and in individual meetings with faculty members. in the spring semester, service-learning was available to students in three courses: a psychology of aging class, from which of students elected to participate in a one-credit service-learning expe- rience; a three-credit stand-alone seminar ( students) that required service-learning with older adults; and a sociology of aging class, from which of students chose to participate in a one-credit add-on service-learning experience. most of these students were human developm ent majors. during the fall semester, students from six different classes chose service-learning. these included students from a section of ürst-year english com position and sophom ores and juniors from fundamentals of gerontology. the remaining students also were juniors and seniors: from com munications and aging, from a human services and policy class, from women’s studies, and from a stand- alone three-credit service-learning seminar. three students did not complete the ünal evaluation and were excluded from the sam ple totals. students’ reactions service-learning were obtained at both the begin- ning and end of each of the two semesters. students were surveyed about their initial feelings toward service-learning at the beginning of the semester. they were asked to share their perceptions of and reac- tions to the service-learning requirement during inform al class discus- sions with the investigators. at the end of each semester, students were asked as part of their ünal written course evaluations to identify ‘‘three things which you learned from your service-learning experience service-learning in gerontology this semester.’’ not all students identiüed three things learned; som e lim ited their responses to one overall summary statement. results students’ initial reactions to service-learning students’ to service-learning initial reactions were predictable: stud- ents were less than enthusiastic when service-learning was offered as an option and even som ewhat angry when it was required as part of a course. several issues were identiüed by students as troublesom e: (a) tim e committm ent (b) im plem entation, (c) developing relationships with older adults, (d) reluctance because of previous negative experi- ences, and (e) fears of negative reactions and other emotional issues. although som e students appreciated the opportunity to become more involved in experiential learning and participate in service activities with older adults, the majority did not welcome any additional course requirements. som e students grumbled about their heavy commit- ments to school, work, fam ily, and others, with many voicing strong concern about how they could üt service-learning into their already overloaded schedules. a second concern expressed by students focused on issues of im ple- mentation. student comments centered on transportation problem s, difüculties making contact with professional staff members and worries regarding establishing relationships with staff members and being accepted as helping volunteers. som e students had questions about whether they possessed the requisite skills to be effective, supportive adjuncts to professional staff members. a third area of concern centered around students’ concerns that they would have difüculty developing relationships with unrelated older adults. they worried about what to say, what they would have in common with older adults, and what kinds of assistance would be needed. they questioned whether they had the personal competence and self-efücacy necessary to be successful and effective in meeting their responsibilities. the fourth and üfth areas of concern for students entering the service-learning program were (a) reluctance due to previous negative experiences with nursing homes (e.g., ‘‘i used to visit my grandm other in a nursing hom e; i always hated going and the smells.’’) and (b) fears about managing their emotional reactions to seeing older adults in wheelchairs or in the ünal stages of alzheim er’s disease. som e students were uncomfortable with the idea that the persons with whom they l. h. brown and p. a. roodin would work might die during the semester, whereas others expressed difüculty with dealing cognitively and emotionally with both their own futures and the adults older who would be facing the challenges, vulnerability, and mortality. in response to these initial negative reactions to service-learning, faculty members engaged in several class discussions with students, letting students know that their misgivings were very common and quite natural given that many of them had had lim ited experience interacting with elderly adults. instructors outlined myths, misconcep- tions, and negative societal stereotypes about aging and care facilities and asked students to reýect in writing how their personal stereotypes about aging may have inýuenced their approach to service-learning. these class discussions ended with ‘‘pep talks’’ for students to assure them that they were competent, caring individuals who would be making a very positive difference in the lives of the older adults they would be visiting. students also were encouraged to get started with their placements right away so that they would not be scrambling to complete their placement hours at the end of the semester. students’ final reactions to service-learning: themes qualitative content analysis of students’ written responses to the request for the identiücation of three things learned from the service- learning experience involved multiple steps of coding for emergent themes. first, the principal investigator read through the student responses several tim es to gain an overall sense of their content. preliminary themes separated comments into three categories: (a) inc- reased knowledge about course content through ürsthand experience, (b) the service-learning experience itself, and (c) students’ increased knowledge about themselves as service-learning volunteers. subse- quent codings separated each prelim inary category into two emergent themes, for a total of six categories. all responses were compared with each theme and grouped under the category deemed to be the best match. the data then were given to the second investigator for sorting the six theme categories and unsorted student responses, with a resulting interrater agreement of % on assignm ent of statements to theme categories. the theme categories are discussed below in order of frequency of response types, from most to least common. insig hts about aging the ürst theme, insights about aging ( statements), included realization of the diversity in aging and am ong older adults as well as a sense of surprise at how sim ilar older adults are to students and an service-learning in gerontology acknowledgm ent of the im portance of support to and respect for older adults. som e students confessed that they had previously held many of the negative stereotypes about aging discussed in class, but that their placement experiences had not only changed their minds, they now felt the need to educate others regarding such misconceptions about older adults. the following are typical responses: ‘‘individual differences exist among the elderly in (a) health, (b) interests, (c) personalities.’’ ‘‘i can see just how important social and family support is for the elderly.’’ ‘‘elderly people do not deserve pity, but our respect and admiration.’’ ‘‘the elderly are no different from anyone else— they still need love, support and companionship.’’ ‘‘not everything that they do or say is because they are old.’’ ‘‘older people enjoy doing many of the same things they used to do when they were younger, but they m ay not do them as well or as quickly.’’ ‘‘growing old is not that bad.’’ ‘‘[i] learned that the elderly are not weak or cognitively confused and deücient.’’ p ersonal growth a nd u ndersta nding the second most common theme expressed by students, personal growth and understanding ( statements), summarized students’ revelations about themselves, including their personal strengths and lim itations. many expressed great pride in having made a difference in the lives of others, and they were touched that just a small effort on their part made such a positive im pact: ‘‘i learned that i really did m ake a difference.’’ ‘‘[i] saw how important it was to show an interest in them and their lives. it made them feel special, and in turn i felt special.’’ ‘‘service-learning helped m e initiate conversations with my own grand- mother; i know that [otherwise] these conversations would never have taken place.’’ ‘‘[i] felt pride in my successful accomplishments through service-learning.’’ ‘‘[i] learned that i am a good listener, how to come to grips with death and the process of grief, and how to be more patient.’’ ‘‘i am not so frightened about aging after my experience.’’ ‘‘i was able to touch someone who loved the attention i gave her.’’ ‘‘i have learned that just as a person’s presence can help another person, you don’t have to do much to help an older person. . . just being with them and sharing time helps.’’ service a nd volunteering the third most common theme for students, service and volun- teering ( statements), involved their thoughts on the signiücant l. h. brown and p. a. roodin value of even minim al efforts to reach out to older adults in the commu- nity and the im portance of community support for older adults who may not have fam ily nearby. som e students vowed to continue their volunteer efforts after the end of the course, during school vacations, and following graduation. student responses included the following: ‘‘elderly adults need a sense of the outside world through volunteers and staff [connections].’’ ‘‘without volunteers, m any activities in nursing homes and m any personal contacts with the elderly would be nonexistent.’’ ‘‘[i learned] how to get started as a volunteer with the elderly in any agency, in any comm unity.’’ ‘‘[i] learned that volunteer work is more im portant than just a grade.’’ ‘‘working with the elderly can be difücult but rewarding; through my service/volunteering i was able to enhance the life of an elderly person and his family.’’ ‘‘anyone can make a difference in the lives of the elderly if they volunteer.’’ ‘‘the community should play a bigger role in m eeting the needs of the elderly.’’ long-term care the fourth theme category, long-term care ( responses), reýected students’ im pressions of the varying types and quality of long- term care facilities, the strengths and weaknesses of nursing home environm ents and managem ent, and an appreciation for the difücult jobs performed by those who care for elderly adults. student reýections included the following: ‘‘[i] learned how different nursing homes, assisted-care, and other long- term care are from one another.’’ ‘‘there are different styles and qualities in nursing homes; they are not all alike.’’ ‘‘certain kinds of facilitated living outweigh the downside of older people living alone.’’ ‘‘i was happy that the place i was in was very nice and comfortable for these people; it changed my views of old age hom es greatly.’’ ‘‘even the nicest-looking homes have their problems.’’ ‘‘people who work with the elderly are underappreciated.’’ ‘‘there needs to be more time built into the day-to-day schedule for staff to interact with the elderly residents.’’ ‘‘i learned a lot about nursing hom e life in general; i didn’t know much about what it was living in one. . . it seems like a small community within a larger one.’’ ‘‘i learned that the resident’s attitude makes a big difference in their experiences in the nursing home.’’ service-learning in gerontology career skills a nd consolid ation the üfth theme category, career skills and consolidation ( responses), reýected the signiücant introspection of students as they considered future career options and the increases they had made in skill acquisition. som e students discovered talents and preferences for working with older adult that they had not known they had. others realized that careers in gerontology were not right for them. for example: ‘‘i am now interested in a career as a recreational therapist with the elderly.’’ ‘‘[i] developed skills and conüdence in working with the elderly.’’ ‘‘this made me decide that i do not want to go into this üeld.’’ ‘‘[i] learned ürst-hand what the position of activities director/recreation director is like.’’ ‘‘[i] learned many new skills to help manage alzheimer’s patients.’’ ‘‘i increased my abilities to relate to and understand the elderly.’’ ‘‘i would like to continue; surprise! i enjoyed service-learning and working with the elderly.’’ ‘‘i am a pretty good candidate to work with the elderly.’’ integra tion of course work with service-learning experiences the ünal theme category for students’ responses, integration of coursework with service-learning experiences ( statements), dem- onstrated synthesis between what was discussed in texts and lectures with students’ placements. as illustrated in the following comments, connections were made between theory and application: ‘‘i discovered i had more knowledge about aging and issues related to the elderly than i thought.’’ ‘‘[i found] direct support for the facts of aging i was learning in class.’’ ‘‘i got to learn a lot both ways about getting old.’’ ‘‘i could relate what the professor said in class to [what was happening with] my elderly service-learning placement.’’ ‘‘i saw directly what we learned about the effects of alzheimer’s disease on family caregivers.’’ ‘‘alzheimer’s disease, as we talked about [in class] is very individual; hard to form generalizations.’’ ‘‘i learned more ürsthand about the medical diseases and issues from class.’’ discussion students’ qualitative responses to their involvem ent in service-learning showed new insights about older adults and the process of aging, and l. h. brown and p. a. roodin greater understanding of a range of long-term care issues. they were able to overcome their initial misgivings about participation in service- learning. many even expressed som ewhat embarrassed gratitude for being encouraged to stay in the program . students were able to shed som e of the traditional cultural stereotypes about older adults and see them as unique individuals with special abilities, talents, experiences, and sensitivities rather than sim ply part of an age group. hegeman and pillemer ( ) noted a sim ilar theme in their analysis of student reactions to service-learning: ‘‘(students) had a greater appreciation for the experiences and history of elderly people, more respect for them, a greater understanding of the problem s they face, and a greater enjoym ent in being with them’’ (p. ). students also showed heightened sensitivity to the im portance of service on behalf of and volunteering with older adults. they seemed shocked at the degree of isolation faced by many older adults, even in those in heavily populated urban and suburban communities. students were more disturbed by encountering older adults who received no regular visitors than by any other part of their service-learning expe- rience, and this observation was often mentioned in their reýections. finally, students recognized their own emerging competence in successfully meeting the challenges of working with older adults. they were som ewhat surprised to ünd that they could make a signiü- cant difference in som eone’s life using skills and abilities previously unknown to them; interpersonal communication skills, patience, and empathy often were mentioned as newly acquired outcomes of service- learning experiences. many students became aware of the complexity of the problem s faced by older adults, the difüculty of developing solu- tions, and the im portance of their contributions. som e also reýected on their enjoym ent in the service activity itself and their willingness to explore gerontology as a career option, whereas others found that they would feel more comfortable working with individuals in younger age groups. these results were consistent with the course objectives, indicating, at least from the students’ anecdotal perspectives, that service-learning experiences helped students academically in that they better under- stood the concepts of gerontology being presented through texts and lectures and were able to apply them in real-world, personal contexts. this echoes the work of eyler and giles ( ), who broadened the deünition of academic learning beyond the factual knowledge demonstrated on exams to include a ‘‘greater depth of understanding and greater ability to apply what they have learned’’ (p. ). by semester’s end, it was common for students to ask why service- learning was not a regular part of the curriculum and integrated into service-learning in gerontology more courses and why service-learning was not made available to them earlier in their college experience. thus, although students initially grumbled about the workload and expressed concern regarding ünding the tim e needed for service-learning, most students indicated by the end of the semester that they valued the experience greatly. a typical response was, ‘‘i’m so glad i did service-learning. . . . i learned so much i never would have gotten in the classroom !’’ nevertheless, when students were asked whether they would have chosen to do service- learning on their own, without som e pressure from a faculty member or a course requirement to do so, most confessed that they probably would not have elected to participate in this form of experiential learning if left to their own devices. strategies to over come resistance there are several strategies that be appropriate to help overcome students’ initial reluctance to participate in service-learning. for example, mentioned earlier was the practice of having faculty members provide students with a pep talk and encouragement before they chose their placements. this may be expanded to include fellow students as mentors who initiate newcomers into the service-learning experi- ence. because service-learning is relatively new, it may be that it has not yet received enough word- of-m outh validation from students who have participated in it to encourage those who have not. one practice just recently tried at suny oswego that seems to have helped in this regard is having students from the previous semester’s service-learning class come as guest speakers to small- group meetings before placement sites are selected to provide incoming students with pointers, reassur- ance, and encouragement. these service-learning veterans exuded so much enthusiasm for the program that there was an alm ost tangible reduction in the tension level in the classroom . another strategy that may be helpful in reducing students’ resent- ment of what they view as additional course work is the availability of a variety of placements from which students have complete freedom to choose the placement with which they feel most comfortable. stukas, clary, and snyder ( ) noted that ‘‘providing greater freedom to students to choose their service activities and related program features might attenuate som e of the negative im pact of requiring participa- tion’’ (p. ). putting students in charge of ünding and following through with their placements could im part a sense of collegial treatment from faculty members, which could increase students’ desires to live up to their responsibilities (eyler giles, ). l. h. brown and p. a. roodin for students who are especially nervous about going into a facility unknown and alone, it may be helpful to have a fellow student go along on team visits. for example, in one group hom e for older wom en, students visiting in pairs became regular members of afternoon card parties. the students reported that although they seldom won, they were very popular for completing the table and providing the older wom en with an opportunity to teach the gam es they loved so much. additionally, stukas et al. ( ) reported that students who worked in pairs on service-learning projects were more likely to show increases in social responsibility and indicate future plans to continue service to others than students who served alone. another factor that can affect students’ overall reactions to service- learning is the level of safety they feel in sharing their thoughts and emotions about service-learning and aging issues. ideas and emotional responses in students’ reýective journals and class discussions need to be safe from criticism, ridicule, and emotional responses from both faculty members and fellow students. according to eyler and giles ( ), ‘‘students need considerable emotional support when they work in settings that are new to them; there needs to be a safe space where they know that their feelings and insights will be respected and appreciated. as their service develops and their questions become more sophisticated, they need intellectual support to think in new ways, develop alterna- tive explanations for experiences and observations, and question their original interpretation of issues and events.’’ (p. ) in conclusion, service-learning is an im portant trend in curricular developm ent connecting theory to practice and linking individuals, colleges, universities, and communities as partners for the betterment of all. it can enhance the curricular goals of gerontology courses and program s while encouraging students’ developm ent of civic respon- sibility. after initial misgivings and feelings of apprehension are overcome, service-learning can be one of the most rewarding and mean- ingful academic experiences students have in their college careers. references astin, a. w., & sax, l. j. 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( ), ( ), - http://dx.doi.org/ . /jvs. . . . received: dec. , revised: mar. , accepted: oct. original article *corresponding author: tel: + - ; e-mail: paola.decristophoris@gmail.com ⓒ the korean society of veterinary science. this is an open access article distributed under the terms of the creative commons attribution non-commercial license (http://creativecommons.org/licenses/by-nc/ . ) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. prevalence and risk factors for carriage of multi-drug resistant staphylococci in healthy cats and dogs paola gandolfi-decristophoris , , ,*, gertraud regula , orlando petrini , jakob zinsstag , , esther schelling , cantonal institute of microbiology, bellinzona, switzerland department of epidemiology and public health, swiss tropical and public health institute, basel, switzerland faculty of science, university of basel, basel, switzerland veterinary public health institute, vetsuisse faculty, university of berne, berne, switzerland we investigated the distribution of commensal staphylococcal species and determined the prevalence of multi-drug resistance in healthy cats and dogs. risk factors associated with the carriage of multi-drug resistant strains were explored. isolates from dogs and cats were identified at the species level using matrix-assisted laser desorption ionisation-time of flight mass spectrometry. the diversity of coagulase-negative staphylococci (cns) was high, with species in dogs and in cats. multi-drug resistance was frequent ( %) and not always associated with the presence of the meca gene. a stay in a veterinary clinic in the last year was associated with an increased risk of colonisation by multi-drug resistant staphylococci (or = . , % ci: . ∼ . , p value lrt = . ). when identifying efficient control strategies against antibiotic resistance, the presence of mechanisms other than methicillin resistance and the possible role of cns in the spread of resistance determinants should be considered. keywords: antibiotics, coagulase-negative, matrix-assisted laser desorption ionisation-time of flight, staphylococci introduction 　staphylococci resistant against methicillin and other antibiotics have frequently been reported in pets [ , ]. these microorganisms are opportunistic pathogens that may colonise the skin and mucosae of humans and other animals. staphylococcus is currently divided into coagulase-positive and coagulase-negative species. the pathogenicity of coagulase-negative staphylococci (cns) has long been underestimated because they were associated with more chronic or subacute infections when compared to coagulase-positive staphylococci (cps) [ ]. however, the etiological role of cns in prosthesis and foreign body infections is increasingly being recognised in human medicine [ , , ]. in pets, the pathogenic potential of these microorganisms has not yet been clearly recognized, although there have been some reports of infections related to methicillin-resistant cns in cats and dogs [ , ]. 　few studies have addressed the composition of staphylococcal populations on the mucosae of healthy cats and dogs [ , ]. previous investigations of the staphylococcal species diversity in these animals have focused on clinical isolates [ ], mainly cps [ ], or described the distribution of well defined antibiotic resistance within a limited number of staphylococcal species [ , ]. however, these studies were carried out before , when staphylococcus (s.) pseudintermedius had not yet been described. in fact, this species had probably been reported in all previous studies as s. intermedius, leading to confusion regarding its actual occurrence in pets [ , , , , ]. s. pseudintermedius has recently been suggested as the most relevant and prevalent cps dog coloniser, and there have been increasing reports on its pathogenicity and methicillin resistance [ ]. 　to date, cns strains in pets has been neglected; however, the recent development of new molecular techniques has allowed accurate identification of cns [ , ], which will eventually lead to a better understanding of these bacterial species. additional knowledge regarding cns carriage in animals will be of benefit, because these bacteria might represent a pool of antibiotic resistance for cps species. indeed, horizontal gene transfer of staphylococcal chromosome cassette mec (sccmec) between cps and s o u r c e : h t t p s : / / d o i . o r g / . / b o r i s . | d o w n l o a d e d : . . paola gandolfi-decristophoris et al. cns species has been documented [ ]. 　in the last decade, several authors have suggested that pets may be reservoirs of antibiotic resistant bacteria [ , , ]. this assumption was mainly based on studies reporting antibiotic resistance in clinical cps isolates from dogs and humans in close contact [ , ]. however, a clear picture of the distribution, diversity and multi-drug resistance of both cps and cns species in pets is lacking, as is the role of cats and dogs as reservoirs of antibiotic resistance. 　the purpose of the present study was to gain insight into the distribution of commensal staphylococcal species of healthy cats and dogs and determine the occurrence of multi-drug resistance in both cns and cps. we also explored risk factors associated with the carriage of these microorganisms by pets. materials and methods study design and settings 　samples were collected between march and december from four different swiss cantons (berne, ticino, vaud and zurich). only healthy pets with no overt acute disease at the time of sample collection were enrolled in the study. the pets either lived in or visited nursing homes for pet-therapy or lived in households. the selection strategy differed between community and nursing homes. pets in the community were included in the study based on convenience sampling in households (n = ) in four swiss cantons representing the northern, southern, central and western part of switzerland. additional pets (n = ) were recruited from cats and dogs visiting a total of veterinary practices in the same regions for routine vaccinations. nursing homes were selected by two-stage random cluster sampling from an exhaustive list of nursing homes located in the four swiss cantons as reported in [ ]. in randomly selected nursing homes, all pets matching the inclusion criteria and present at the time of sample collection (n = ) were enrolled in the study. informed written consent was obtained from all pet owners prior to the start of the study, and the investigation received the approval for animal experimentation from the cantonal and swiss federal veterinary offices (authorisation reference no. / - / ). sample collection 　nasal and ear swab samples were collected using cotton swabs (amies agar gel c and c; copan, italy) that had been soaked in a physiological % nacl solution. for collection, a swab was introduced ∼ cm in the nostril, while a second swab was introduced as deeply as possible in the ear channel of each animal. the collected samples were then stored in transport medium at room temperature and analyzed for the presence of staphylococci within ∼ h of collection. a questionnaire collecting information regarding the demographic and health status of the pets was filled in by the owners (available on request). sample analyses 　both swabs were streaked onto mannitol salt agar (chapman - msa ; biomérieux, france), after which they were incubated for h at oc, enriched in mrsa broth supplemented with μg of oxacilllin ( h at oc) and cultured on gelose chromid s. aureus (said; biomérieux) for h at oc. all morphologically different colonies were isolated and catalase positive, gram positive coccal bacteria were frozen in skim milk at − oc until further analyses. 　isolates were grown on blood agar for h and then identified by matrix-assisted laser desorption ionisation- time of flight mass spectrometry (maldi-tof ms) using an axima confidence spectrometer (shimadzu-biotech, japan) in positive linear mode (m/z = , to , ) [ ]. the identity of isolates that could not be identified by maldi-tof ms ( %) was confirmed by sequencing of the amplified partial rpob gene [ ]. 　phenotypic antibiotic resistance to different drugs was assessed by the kirby-bauer method on mueller-hinton blood agar (mhs ; biomérieux). the following antibiotics were tested: penicillin ( units), ampicillin ( μg), oxacillin ( μg), cefazolin ( μg), gentamicin ( μg), tetracycline ( μg), erythromycin ( μg), clindamycin ( μg), vancomycin ( μg), trimethoprim-sulfamethoxazole ( . + . μg), ciprofloxacin ( μg), amoxicillin and clavulanic acid ( + μg), ceftazidim ( μg), imipenem ( μg), tobramycin ( μg), fusidic acid ( μg), rifampicin ( μg), chloramphenicol ( μg), cefoxitin ( μg), kanamycin ( μg), doxycyclin ( μg), mupirocin ( μg), linezolid ( μg) and quinopristin-dalfopristin ( μg). an inducible clindamycin resistance test (“d-zone” test) was also carried out for all isolates. results were interpreted according to the clinical and laboratory standards institute (clsi) guidelines [ , ], and intermediate results were classified as resistant. multi-drug resistance (mdr) was defined as resistance to at least three drugs belonging to three different antibiotic classes [ ]. additionally, the presence of the meca gene, which confers methicillin resistance, was investigated by polymerase chain reaction (pcr) on all isolates that showed phenotypic resistance to oxacillin [ , ]. we considered isolates from the same animal as being different strains if they belonged to different staphylococcal species or their phenotypic antibiotic resistance profiles differed. statistical analyses 　sample size calculation was based on the assumption that % of pets carried at least one mdr staphylococcal strain and that the intra-class correlation coefficient (rho) in these multi-drug resistant staphylococci in healthy pets table . demographics of investigated cats and dogs characteristics nursing home (n = ) community (n = ) n/n %* % ci n/n %* % ci cats female sterilized age 　＜ years 　 ∼ years 　＞ years cantons 　berne 　ticino 　vaud 　zurich visited veterinary clinics in the last year stayed in an animal home in the last year pyoderma in the last year urinary infections in the last year otitis in the last year antibiotic treatment in the last months immunosuppressant treatment in the last months / / / / / / / / / / / / / / / / / ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ / / / / / / / / / / / / / / / / / ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ ∼ *proportions. ci: confidence interval. table . proportion of staphylococcal and mdr staphylococcal carriage in cats and dogs staphylococcal carriage multi-drug resistance carriage staphylococci cps cns cps & cns n/n %* % ci n/n %* % ci n/n n/n n/n total cats dogs / / / . . . . ∼ . . ∼ . . ∼ . / / / . . . . ∼ . . ∼ . . ∼ . / / / / / / / / / *proportions. cps: coagulase-positive staphylococci, cns: coagulase-negative staphylococci. settings was . . we used the cluster sample equation developed by bennett et al. [ ] for all sample size calculations. assuming that each nursing home with pets owned or was visited by three animals on average, sample collection in different nursing homes would have provided pets. accordingly, the expected precision for the prevalence estimate of mdr in pets would have a standard error of . %, and a % confidence interval (ci) = . ∼ . %. 　the characteristics of the cats and dogs were compared to check for consistent differences in the demographics and health status of the different populations sampled. a chi-square test (fisher’s exact test when expected observations ＜ ) and % ci were used for this comparison. we reported the prevalence of staphylococci and mdr staphylococci and the distribution of antibiotic resistance among different staphylococcal species together with the median number of resistances to different antibiotic classes. univariable logistic regression models with mdr staphylococcal carriage status of the pet as the outcome variable of interest were applied to explore risk factors. unadjusted odds ratios (or with % ci) were calculated as a measure of association. statistical significance of each explanatory variable was determined paola gandolfi-decristophoris et al. table . staphylococci in nostrils and ears of dogs (n = ) and cats (n = ) and their antibiotic resistance profiles identified isolates dogs cats mdr isolates* max. ab† meca‡ mdr isolates* max. ab† meca‡ nostril ear nostril ear nostril ear nostril ear nostril ear nostril ear coagulase positive 　s. aureus 　s. pseudintermedius coagulase negative 　s. arlettae 　s. auricularis 　s. capitis 　s. caprae 　s. caprae/capitis 　s. cohnii 　s. devriesei 　s. epidermidis 　s. equorum 　s. felis 　s. haemolyticus 　s. hominis 　s. kloosi 　s. lentus 　s. lugdunensis 　s. nepalensis 　s. pasteuri 　s. pettenkoferi 　s. saprophyticus 　s. sciuri 　s. simulans 　s. succinus 　s. vitulinus 　s. warneri 　s. xylosus other staphylococci 　s. schleiferi subsp. 　staphylococcus spp. / / / / / / / – / / – / / – / / – – – – / / / / / / / / / – / / / / / – / / – / / / / / – / / / / / – / – / / – / / / / – / – – – – – – – – - – – – – – – / / / / / / / – / / – / / – / / – – – – / / / / / / / / / – / / / / / – / / – / / / / / – / / / / / – / – / / – / / / / – / / / / / / / / – / / – / / / / / – / – / – / / / / – / / / / / / / / / – / / / / / – / / / / / – / / – / / / / / / – / / / / – – – – – – – – – – – / / / / / / / – / / – / / / / / – / – / – / / / / – / / / / / / / / / – / / / / / – / / / / / – / / – / / / / / / – / / / / *number of multi-drug resistant isolates over the total number of isolates for a given species or group. †maximum number of different resistant antibiotic classes. ‡number of strains carrying the gene encoding methicillin resistance over the total number of isolates for a given species or group. by a likelihood-ratio test (lrt). we included in a multivariable model all variables with lrt p values ≤ . from the univariable analysis. all statistical analyses were performed using stata . (stata corporation, usa). results demographics and staphylococcal carriage in pets 　we collected samples from healthy pets ( cats and dogs), of which lived in or visited nursing homes at least once a week and that lived in the community. the demographics of the two populations studied are reported in table . parameters such as sex, age, sterilisation, otitis in the last year, and antibiotic treatment showed different distributions between the nursing home and community settings, but the % ci estimates of these parameters overlapped (table ). we did not carry out stratified analyses of the samples because the overall frequencies of mdr in nursing homes ( / ) and in the community ( / ) did not differ significantly (χ = . , p = . ). 　staphylococci were detected in % ( / ) of pets, and % ( / ) of all animals carried at least one mdr strain. there were no significant differences in mdr carriage between pet species [ . % ( % ci: . ∼ . ) multi-drug resistant staphylococci in healthy pets table . in vitro antibiotic resistance of the isolates investigated isolates from dogs (n = ) isolates from cats (n = ) n (%) n (%) penicillin ampicillin oxacillin ceftazidim cefoxitin cefazolin co-amoxicillin imipenem kanamycin gentamicin tobramycin tetracycline doxycyclin erythromycin clindamycin vancomycin ciprofloxacin trimethoprim- sulfamethoxazole rifampicin chloramphenicol linezolid quinopristin- dalfopristin fusidic acid mupirocin ( ) ( ) ( ) ( ) ( ) ( . ) ( . ) ( ) ( ) ( . ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( . ) ( ) ( . ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( . ) in cats and . % ( % ci: . ∼ . ) in dogs; χ = . , p = . ] (table ). in cats, most cns were mdr ( / ), whereas the proportion of mdr in cps was small ( / ). conversely, mdr cps ( / ) and mdr cns ( / ) carriage was almost equal in dogs (table ). additionally, we observed species-specific differences (χ = . , p ＜ . ) in the proportion of s. pseudintermedius carriage, with % ( / ) of dogs and % of cats ( / ) harbouring this species. no difference in s. aureus carriage was observed between the two pet species ( / dogs and / cats, respectively). staphylococcal isolates 　we isolated staphylococcal strains ( from the nostrils and from the ears) from dogs and ( from the nostrils and from the ears) from cats (table ). we were able to identify . % ( / ) of all isolates at the species level. two s. schleiferi isolates from two cats were identified only at the species level. cns species accounted for % ( / ) of all isolates in dogs and % ( / ) in cats (table ). 　in cats, the total number of cps strains was lower ( / ) than in dogs ( / ). among the cps strains, s. pseudintermedius was more frequently isolated from dogs [( / ), %] than from cats [( / ), %], whereas s. aureus was more frequent in cats [( / ), %] than dogs [( / ), %]. no other cps were isolated. 　the diversity of cns was high, with different species in dogs and in cats (table ). s. felis was only isolated from cats, in particular from their nostrils, and it represented % of all cns isolates ( / ). other cns recovered in relevant proportions from both pets were s. epidermidis, s. warneri, s. hominis, s. xylosus and s. equorum (table ). antibiotic resistance 　the meca gene was present in % ( / ) of dog and % ( / ) of cat isolates. we did not recover any mdr s. aureus (table ). mdr, with a few strains showing resistance to eight different antibiotic classes, was detected in bacteria at proportions of % ( / ) in dogs and % ( / ) in cats. mdr was observed in s. pseudintermedius isolated from both pet species with resistance to up to six different antibiotic classes, but no methicillin resistance was seen (table ). 　about % of all isolates in dogs and % in cats showed phenotypic resistance to penicillin and ampicillin (table ). fusidic acid and erythromycin resistance were detected in % and % of dog and % and % of cat isolates, respectively. additionally, % of all strains isolated from dogs were resistant to tetracycline and % to kanamycin. clindamycin resistance was reported from % of dog and % of cat isolates (table ). exploratory analysis of risk factors 　univariable exploratory analysis revealed that a stay in a veterinary clinic in the last year was associated with increased risk of colonisation by mdr staphylococci (or = . , % ci: . ∼ . , p value lrt = . ; table ). we included species, canton, stay in veterinary clinic in the last year, and antibiotic treatment in the last months in the multivariable analysis. no missing data for these variables was observed for all records. when accounting for other variables, we observed an influence of the cantons (geographic origin) on the carriage of mdr staphylococci (p value lrt = . ). additionally, cats had a lower risk of being carriers of mdr staphylococci, whereas a stay in a veterinary clinic in the last year and antibiotic treatment in the last months were associated with a higher risk, although these differences were not statistically significant (table ). paola gandolfi-decristophoris et al. table . risk factors for cats and dogs to be carriers of mdr staphylococci variable level mdr univariable analysis multivariable model or lrt or† lrt n n (%) % ci p value* % ci p value* origin 　nursing homes 　community setting species 　dog 　cat sex 　male 　female age 　 ∼ years 　 ∼ years 　 ∼ years sterilised 　no 　yes canton 　bern 　ticino 　vaud 　zurich stayed in veterinary clinic in the last year 　no 　yes stayed in animal home in the last year 　no 　yes pyoderma in the last year 　no 　yes urinary infection in the last year 　no 　yes otitis in the last year 　no 　yes antibiotic treatment in the last months 　no 　yes immunosuppressant in the last months 　no 　yes ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) ( ) baseline 　 . baseline 　 . baseline 　 . baseline 　 . 　 . baseline 　 . baseline 　 . 　 . 　 . baseline 　 . baseline 　 . baseline 　 . baseline 　 . baseline 　 . baseline 　 . baseline 　 . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . . . . . . . . . . . . . not included baseline 　 . not included not included not included baseline 　 . 　 . 　 . baseline 　 . not included not included not included not included baseline 　 . not included . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . ∼ . . . . . *p value considered statistically significant if ≤ . . mdr: multi-drug resistance, or: odds ratio, lrt: likelihood-ratio test. discussion 　this study provides detailed information on staphylococcal carriage in healthy cats and dogs and on drug resistance of these bacteria to different antibiotic classes for the first time since the description of s. pseudintermedius. we showed that s. pseudintermedius was recovered from the mucosae of healthy dogs more frequently than from those of healthy cats. previous hospitalisation (at least one night in a veterinary clinic) was a risk factor for the carriage of mdr staphylococci in pets using the univariable approach. the multivariable model multi-drug resistant staphylococci in healthy pets showed that geographical distribution of the animals in the four cantons had an influence on the carriage of mdr staphylococci, which might reflect different pet health care and prescription practices of veterinarians in different regions of switzerland. 　identification of the staphylococci was carried out by maldi-tof ms, which provides reliable and rapid identification of the taxa in the s. intermedius group (s. delphini, s. intermedius and s. pseudintermedius) [ ]. previous investigations of the staphylococcal population of the mucosae of cats and dogs were based on phenotypic characterisation of the isolates, which may have led to misidentification of some closely related staphylococcal species [ , ]. 　we isolated mdr staphylococcal strains from healthy cats and dogs; however, mdr was not always associated with the presence of the meca gene. in this study, resistance of strains to different antibiotic classes ranged from very low proportions (e.g., ∼ % resistance to ciprofloxacin in cats and dogs) to high values ( %) for kanamycin resistance in dogs. methicillin resistance is of particular interest, because it confers resistance to all beta-lactams and is also often linked to resistance to other antibiotic classes; however, other resistances are also relevant in clinical settings, and infections resulting from mdr opportunistic pathogens are a critical problem to clinicians because they limit the choice of active antibiotic treatments [ ]. 　it should be noted that our study has some limitations. specifically, the exploratory analysis of risk factors was carried out by combining all staphylococcal species and information on pet-therapy animals as well as household pets, even though the risk associated with the carriage of mdr staphylococci belonging to several species might differ between groups. this approach was necessary because the numbers for given combinations of investigated risk factors and animals carrying different mdr staphylococcal species were small. pet management factors in the three months preceding the study were reported by the owners; therefore, a recall bias might be present. however, we do not consider this potential bias to be important because one can reasonably expect pet owners to recall whether or not a pet had visited a veterinary clinic during the preceding three months. we did not collect data on the number of different antibiotic treatments and the length of treatments, and the analysis of these data might have revealed other risk factors. in addition, we defined mdr as resistance of a strain to at least three antibiotics of different classes. official guidelines (e.g., clsi and eucast) lack a clear and standard criteria to define a staphylococcal strain as mdr, which reduces the possibility of carrying out meaningful comparisons with published data [ ]. despite the limitations of an exploratory univariable approach, our results confirm findings from published studies regarding factors associated with the carriage of mdr staphylococci in pets, and in particular, the importance of previous hospitalisation, which was already reported as a risk factor for acquisition of both mrsa and mrsp in pets [ , ]. 　our study has shown that carriage of multi-drug resistant staphylococci in healthy cats and dogs is common; thus, clinical therapy guidelines would benefit from an approach that is not only focused on methicillin resistance, neglecting the presence of other resistances. the monitoring of antibiotics use in veterinary clinics could provide an overview of possible future trends of antibiotic resistance in pets. in veterinary medicine, further studies investigating the dissemination of antibiotic resistance determinants would benefit from considering the possible role of reservoirs of cns in their spread. acknowledgments 　we thank the staff of the istituto cantonale di microbiologia for help with laboratory analyses and providing assistance with collection. the swiss federal veterinary office (bvet) provided financial support for this study (grant no. . . ). references . bagcigil fa, moodley a, baptiste ke, jensen vf, guardabassi l. occurrence, species distribution, antimicrobial resistance and clonality of methicillin- and erythromycin-resistant staphylococci in the nasal cavity of domestic animals. vet microbiol , , - . . bennett s, woods t, liyanage wm, smith dl. a simplified general method for cluster-sample surveys of health in developing countries. world health stat q , , - . . carbonnelle e, beretti jl, cottyn s, quesne g, berche p, nassif x, ferroni a. rapid identification of staphylococci isolated in clinical microbiology laboratories by matrix- assisted laser desorption ionization-time of flight mass spectrometry. j clin microbiol , , - . . clsi. performance standards for antimicrobial susceptibility testing; 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approved standard - second edition. nccls doncument m -a . nccls, wayne, . . nienhoff u, kadlec k, chaberny if, verspohl j, gerlach gf, kreienbrock l, schwarz s, simon d, nolte i. methicillin-resistant staphylococcus pseudintermedius among dogs admitted to a small animal hospital. vet microbiol , , - . . penna b, varges r, martins r, martins g, lilenbaum w. in vitro antimicrobial resistance of staphylococci isolated from canine urinary tract infection. can vet j , , - . . soares magalhães rj, loeffler a, lindsay j, rich m, roberts l, smith h, lloyd dh, pfeiffer du. risk factors for methicillin-resistant staphylococcus aureus (mrsa) infection in dogs and cats: a case-control study. vet res , , . . weese js. antimicrobial resistance in companion animals. anim health res rev , , - . . weese js, dick h, willey bm, mcgeer a, kreiswirth bn, innis b, low de. suspected transmission of methicillin-resistant staphylococcus aureus between domestic pets and humans in veterinary clinics and in the household. vet microbiol , , - . . yoo jh, yoon jw, lee sy, park hm. high prevalence of fluoroquinolone- and methicillin-resistant staphylococcus pseudintermedius isolates from canine pyoderma and otitis externa in veterinary teaching hospital. j microbiol biotechnol , , - . . zadoks rn, watts jl. species identification of coagulase-negative staphylococci: genotyping is superior to phenotyping. vet microbiol , , - . breaking out of the modernist cloister": a restorative approach to community health care facility design by geralyn margaret ann l. hogan b.sc.n., the university of british columbia, a thesis submitted in partial fulfilment of the requirements for the degree of master of landscape architecture in the faculty of graduate studies (department of landscape architecture, faculty of agricultural sciences) we accept this thesis as conforming to the required standard the university of british columbia april © geralyn m. a. l. hogan in presenting this thesis in partial fulfillment of the requirements for an advanced degree at the university of british columbia, i agree that the library shall make it freely available for reference and study. i further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. it is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. department of nca^^z^r^y^ ctsfjii '̂ le c v w < the university of british columbia vancouver, canada date / o£r jo - - ^ ^ abstract. the aim for this project was to explore a more restorative manner of health care facility design that would manipulate the environment in order to reduce stress, prevent illness, and promote wellness. 'restorative design' has been applied in the public realm but is not commonly seen on the hospital landscape. regional hospitals across canada are created almost entirely for function. recent studies on the potential impact of design, however, may prove beneficial in reducing hospital stays, reducing absenteeism, increasing productivity, and, quite simply, improving the health of the community. this project looked at available data, studies, and expert opinions and attempted to develop a framework for restorative design as applied to the hospital landscape. four global principles for restorative design were identified (legibility, inherent familiarity, accessibility, and access to natural elements). the project then went further to try and delineate specific needs for specific groups. visitors, staff, patients, and the surrounding community were all considered integral parts of the open space and figured highly in the final design and program. both global and specific needs for stress reduction were translated into several very specific design implications that could be translated into design and programming. the project explored unconventional, "restorative" means of evaluating the success or failure of design moves. most notably, an unconventional large open space was laid out for several reasons: it provided the best chance for enhancing biodiversity on the site, it was accessible (visually and/or physically) by a variety of users and its creation offered several programming possibilities. a proposal was put forth for shared management of the open space with a local volunteer stewardship group as a way to offset costs as well as enhance a sense of community ownership. it is important to note that only one vision for this hospital site has been proposed here. the developed principles and design implications, however, may be taken and applied to any given site (public or private) to develop a landscape that actively participates in the healing process. the following document, made up of both written text and graphic images, aims to explain and illustrate the design process and the design proposals put forth in this project. several of the original drawings were done at much larger scales and many were illustrated in color. a cd-r version of this document has been submitted and may be useful to better visualize some of these graphics. - - table of contents abstract. ii table of contents. iii table of figures. v acknowledgements. viii chapter . challenging the traditional approach to hospital design. • . preface. • . introduction. • . project goal and objectives. • . project approach. • . site introduction. chapter . restorative design: literature review. • . definition. • . inherent familiarity: the archetypal landscape. • . legibility: the preferred landscape. • . the call to nature: the living landscape. ° • . physical & visual connections: the accessible landscape. chapter . inquiry into status of hospital design • . history of hospital design: an overview. • . current trends affecting health-care facility design. chapter . applied restorative design: principles and implications. • . global restorative principles & design implications. • . specific user requirements and design implications. • . . patients and visitors. • . . staff and volunteers. • . . community members. chapter . public process: a discussion. • . the planning phase. • . site-specific programs ^ chapter . marshall road location: existing conditions. • . history of existing project. "̂ • . analysis: regional context. • . analysis: site context. • . . focus: mill lake access. • . . focus: trans-canada highway. • . . focus: regional views/landmarks • . . focus: seniors as neighbours • . on-site conditions • . summary and site-specific objectives chapter . a vision for restorative hospital design. • . site narratives. • . introduction of design & program. • . design process. • . sustainable practices. • . . biodiversity enhancement. • . . stormwater collection. hospital program/site layout. key views. site circulation. open space organization. proposal for community stewardship. master plan specifics. chapter . . . . . . the . . . . . . . . . restorative vision: details and specialized spaces urban entrance. community cafe. urban woodlot. accessible walking loops. psychiatry design & programming. cancer clinic woodlot garden. staff refuges. accessible building perimeter. open space-'pasture, pond, & production'. chapter . recommendations for future inquiry or design references appendix i appendix ii principles of universal design principles of cpted table of figures. figure - : design methodology flow chart figure - : mass-void for monastic cloister design figure - : pavilion style hospital figure - : image of riverview psychiatric hospital grounds, port coquitlam, b.c figure - : demolition of pruitt-igo social housing, figure - : prototypical modernist hospital, current day figure - : african savannah landscape figure - : precedent: african savannah project, toronto zoo figure - : abbotsford bench art program figure - : restorative interaction with nature figure - : creekfield lake nature trail in houston, texas figure - : prototypical windowless emergency wards figure - : approach to restorative hospital design figure - : model for public involvement figure - : community volunteer activity figure - : downtown abbotsford figure - : downtown abbotsford figure - : relationship to local municipalities figure - : 'manzana heritage apple farms', abbotsford figure - : winter raspberry canes, abbotsford figure - : baling hay abbotsford figure - : farmland at sumas highway exit (view mount baker) figure - : population abbotsford by age figure - : abbotsford ethnic composition figure - : aerial view over site, figure - : immediate site context figure - : highland park east of site figure - : menno home and hospital north of site figure - : low-rise residential figure - : trans-canada highway south of site figure - : street context figure - : visualization sketch primrose avenue connection figure - : marshall road looking east figure - : primrose avenue looking north figure - : mill lake viewpoint figure - : mill lake trail figure - : mill lake: recreational destination figure - : sound protection assessment figure - : sound berm construction figure - : proposal for vtrans-canada green' figure - : current southeastern berm figure - : view of trans-canada highway figure - : existing berm as viewed from highway figure - : viewshed mapping to mount baker figure - : view to mt. baker figure - : ortho map of proposed site figure - : summary of site conditions figure - : vegetation analysis figure - : topography analysis - v - figure - : restorative opportunities figure - : central treed knoll (douglas fir) figure - : cow pasture, one block from site figure - : raspberry canes, one block from site figure - : red-tailed hawk figure - : townsend warbler figure - : stellar j ay figure - : views from the highway: potential green corridor figure - : master plan for fraser valley health centre figure - : conceptual design sketch figure - : conceptual design sketch figure - : marshland shared by human and habitat figure - : biodiversity analysis figure - : stormwater detention calculations figure - : conceptual plan of constructed wetland figure - : site layout general considerations figure - : example of lighting: precedent figure - : built program basics figure - : built program (floors g- to ) figure - : built program (floors to ) figure - : built program (floors to ) figure - : key views influencing site design figure - : typical street and lane profiles figure - : grass crete section figure - : circulation: automobiles figure - : circulation: self-powered figure - : open space organization and management figure - : healing gardeners' staging centre figure - : community arrival figure - : master plan-proposed changes to grading figure - : master plan-proposed vegetation retention figure - : rough worksheets as design process figure - : axonometric of entrance atrium figure - : location of shared entrance figure - : detail of shared entrance street plan figure - : section looking at community cafe figure - : location of community cafe figure - : multi-faith congregation centre in woodlot figure - : collages of proposed native plants figure - : location of urban woodlot figure - : location of designed pathways figure - : grass crete figure - : accessible raspberry canes figure - : conceptual walkway: marsh , figure - : conceptual walkway: gardens figure - : conceptual walkway: orchard rows figure - : section-elevation of trail path figure - : holter monitor diagram figure - : pathway program: photoshop visualization # figure - : pathway program: photoshop visualization # figure - : pathway program: photoshop visualization # •figure - : access to volunteer centre: visualization figure - : location of psychiatric outdoor programs figure - : psychiatric outdoor connections figure - : detail psychiatric built program - vi - figure - : 'back door privacy': delivery area smoking nook figure - : detail plan of psychiatric unit figure - : section-elevation of cancer clinic garden figure - : location of cancer clinic garden figure - : planting plan for cancer clinic garden figure - : plan of mt. baker staff retreat figure - : plan of emergency (with interior connections) figure - : location of proposed staff refuges figure - : elevation of er staff refuge figure - : detail of visitor nook : figure - : key to visitor nook locations figure - : outdoors accessibility for all users figure - : sample visitor nook figure - : axonometric of site showing open space figure - : location pasture, pond & food production figure - : a designed, supervised play area figure - : ehs access from trans-canada highway figure - : examples of varied water features figure - : image of 'mountain stream' bedscapes ™ figure - : beth israel cardiac catheterization study, - vii - acknowledgements. the process of exploring the issue of health care design and attempting to find new, more restorative approaches to landscape design proved to be a far more difficult task than anticipated. the field of health care design is neither a glamorous nor a particularly popular area of design and i acknowledge all those individuals who took the time to lend their assistance in this at times very frustrating and challenging, but ultimately extremely rewarding, project. i extend my gratitude to patrick mooney, the chair of my thesis committee, for his persistence that i always go that one step further to do the best job possible. his expertise, time, patience, excellent critiques and adherence to what i believe to be suitably high expectations for a graduate student were much appreciated. appreciation also goes to my thesis committee members don luymes, stephen sheppard, and alex ostry for their time, advice, opinions, and also for their abilities to recognize and point out areas in need of more work. my committee, on the whole, appeared very intent of pushing me as far as possible. this is appreciated. thanks to my fellow struggling graduate students for their support, their impromptu critiques and their mere presence. during marathon studio sessions, misery does love company. i would not have survived these intensive last several months without the social support of my family and friends (ken and his fold-out couch, in particular) and the positive distraction (and restorative benefits) of my many four-legged companions. going home, even once or twice a week, to my pastoral landscape and being surrounded by a welcoming committee of horses, sheep, goats, dogs, cats, ducks, geese, wild birds and visiting coyote families (among others) provided important instant rejuvenation. one final thank you to my colleagues in er who at hours on many a night shift were still able to express positive opinions that there is hope for a health care system teetering on the edge of crisis. while few of them understand the scope of a landscape architect, they were always anxious to listen, debate, respond to questions, and ask questions. - v m - chapter i. challenging the traditional approach to hospital design . . preface. the translation of art and science into meaningful physical form underscores the role of landscape architecture in modern design. drawing from environmental, psychological and medical research, it is possible to create space that can profoundly influence the collective and individual human condition. while a commitment to advancing aesthetics and style remains a,strong component of landscape architecture, there is significant opportunity to design for fundamental social, ecological, and economic health and sustainability. recognition of the ability of environment to influence, negatively or positively, health and well-being has resulted in a surge of inguiry over the last forty years into the potential for restorative design. restorative design takes the position that manipulation of environmental cues can reduce stress, promote well-being, and assist in healing both the physical and psychological being. increasing awareness of the powerful effect of stress has triggered significant research into means by which form of place can reduce and manipulate stressors, and subseguently ameliorate human condition. stress is necessary to sustain life. both positive and negative demands (external and internal) intertwine to create a dynamic state of being. problems arise as a result of over-exposure to stress without opportunity for respite and restoration. stress is both additive and cumulative. unrelenting and prolonged, a state of crisis is reached and symptoms (physical and/or psychological) appear. stress is considered a major contributing factor not only to mental illness, but many physical conditions. coronary artery disease, cancer, respiratory disorders, multiple sclerosis, diabetes, rheumatoid arthritis, alcoholism, drug abuse, and family discord and violence have all been linked directly or indirectly to stress. the economic burden of increased stress is revealed in increased health insurance outlays, burnout, absenteeism, and reduced productivity. hospitalized patients experience considerable stress. "apart from the pain and other pressures associated with illness, major stress is produced by poorly designed healthcare facilities that typically are noisy, invade privacy, or interfere with social support" (ulrich, ) . the issue of stress in the health care facility is not limited to patients. staff members (faced with lack of control and high responsibility) are also victim to high measures of daily stress, often leading to burnout and illness (ulrich ). addressing the needs of staff, in particular caregivers, in the hospital environment will necessarily have a strong impact on patients. stress reduction is the primary goal of restorative design. applied to both public and private situations, restorative design utilizes the knowledge of shared human preferences for certain conditions and environments to create spaces that maximize comfort, security and - - familiarity. kaplan and kaplan's model of restorative environments ( ), ulrich's theory of supportive design ( ), e.o. wilson's description of the human need for contact with nature ( ), and appleton's theory of fundamental landscape preferences ( ) are but a few of the significant works giving form and direction for restorative design. application of restorative design principles to health care facilities has been significant in the areas of paediatrics, geriatrics (mooney and nicell ), psychiatry (paine ) and surgery/cardiac (ulrich , ). a unique health care facility challenge that has been largely avoided, however, is the design for multiple users as found in community or tertiary hospitals. guidelines for siting and design of larger facilities are almost exclusively limited to the built form as it relates to function (cooper marcus and francis ) . "what is needed is a shift in thinking that requires hospital designers to re-examine the hospital environment in the same way that designers of playgrounds, mental health care facilities, and housing for the elderly might do. how can these spaces be designed and managed so as to maximize benefits to the intended users?" (cooper-marcus and francis, , p. ). the creation of form that provides a variety of options for stress reduction, that spans the wellness-illness continuum, and that recognizes a diversity of users (patients, visitors, workers, and community members) is the focus of this inquiry. the goal of design will be to vision a health care environment that is holistic and healing at the broadest sense and that that provides shared opportunities for stress reduction for hospital staff, neighboring community members, as well as patients and visitors. . . introduction. the awareness by designers of the power of landscape to be restorative to the human condition has resulted in a revisitation of the manner in which schools, senior's facilities, and psychiatric hospitals are designed. private homes and gardens are more and more the centre of "therapeutic design". western community hospitals, however, remain in the image that has plagued them for fifty plus years. inward-looking and disconnected from the community, hospitals remain a frightening destination for most of society (cooper marcus and francis, ). token healing gardens are retrofitted for specific patient populations (as economics permit), but, society is slow to re-image the modern day hospital in a manner that is humanistic and socially relevant. an inwardly focused design works contrary to desires to move health care into the community to be embraced in a larger way by individuals and by communities. designing for the promotion, maintenance and enhancement of health on the grounds of health care facilities demands a stronger connection with the surrounding community in order to disrupt the prevailing image of hospital as a place to house the sick. modern day sensibilities and limitations require a more integrated, sustainable and democratic use of space; in this case a space that has limitless opportunities to benefit all members of the public as they fluctuate across the wellness-illness continuum. - - our modern history of hospital siting and design has focused an inordinate amount of time and energy on building footprints and inward-looking programs. the hospital landscape is largely inaccessible, secondary, "decorated" grounds. this thesis suggests this to be a waste, not only of potential public green space, but, more importantly, of missed opportunities to bring communities and individuals together in an environment where the things that divide us melt under the weight of those that connect. it is the contention of this inquiry that the entire grounds of the facility should be designed as a restorative landscape at the outset; a restorative landscape that maximizes the power of natural and community resources, and provides benefit to all members of society, at any stage of wellness. not only have we missed opportunities to connect hospitals with schools, churches, and various community amenities, but also the potential (particularly in rural/suburban areas) to couple hospital site design with conservation efforts is overlooked. health care facilities, with their often-generous tracts of land, can be designed to foster regional desires for habitat protection, stream reclamation, and landscape protection and enhancement. site-specific analysis of all proposed sites (and for sites reviewed for retrofitting) may reveal possibilities to connect hospital space with bird migration routes, for example, adding not only the restorative capabilities of the garden, but to the betterment of the environment at large. situated in the midst of most communities, a health care facility should stand as a precedent and an example of restorative site planning and design. heightened used of hospital environs by community members should increase not only stewardship of the landscape, but also the sense of being "caretakers of our neighbors". if one's only exposure to those aging, suffering, struggling, or dying is a quick glimpse out the car window, how can community empathy possibly be enhanced? in contrast, if patients share space with schoolchildren, daily joggers, and caretakers of habitat and landscape, the opportunities for interaction, understanding, and action will necessarily increase. . . project goal and objectives. a) following the belief that : . design of the environment can have a powerful impact on individual and collective health and well-being; . health care facilities should be designed as holistic, restorative landscapes, not patchworks of isolated and introspective spaces, and . health care facilities should be designed as a component of the larger community, recognizing natural and social interrelationships; the goal of this project is to design and program a community health care facility that supports and enhances the health and well-being of all users. - - b) objectives. • to understand existing restorative design principles and objectives. • to understand the evolution of community hospital design. • to identify principles of restorative design that may be applied to health care facility design. • to illustrate, through design and programming, a vision for application of restorative design principles to the case study hospital site. . . project approach. this project began with the observation that hospitals, by design, act contrary in efforts to heal and promote health. this observation is the result of the author's years working in the health care field as a registered nurse (primarily in emergency and trauma care, cardiac and intensive care, cancer, infectious diseases, and acute burns). an ever- present barrier to good care was and continues to be the physical environment of the hospital itself. the author accepts that a strength of this project is this voice that draws from two worlds—health care and design. the author also accepts that this voice has inherent biases based on strong personal experience and so will rely heavily on the information supplied by multiple experts from varied disciplines (literature review): • behavioural sciences • landscape architecture • ecological sciences • medical sciences • environmental psychology • planning following the literature review, an effort will be made to delineate certain principles of restorative design that could be used to explore a more successful approach to hospital design. this initial part of the project aims to create an overall framework for design. these theoretical findings and assumptions were used to create a conceptual plan for the proposed hospital site. design process and methodology is illustrated in figure - on the following page. . . site introduction. in june of , the ministry of health gave the green light to a new regional hospital to be built in abbotsford, british columbia. this municipality, the th largest in british columbia is located approximately o miles east of vancouver. fifteen years in the planning, the estimated date of completion for the new hospital is . a -bed regional acute care hospital is being planned (in conjunction with a new regional cancer care clinic) in an effort to relieve the stress on tertiary centres in vancouver, and to bring health care closer to home for the growing population of the central fraser valley. the hospital site sits adjacent to the trans-canada highway on a . ha lot currently surrounded primarily by residential and institutional buildings. - - design t h e s i s m e t h o d o l o g y "exploring t h e restorative h o s p i t a l l a n d s c a p e " p r o b l e m i d e n t i f i c a t i o n "can landscape design enhance the restorative experience of a community hospital for patients, staff, and public?' r e s e a r c h - l i t e r a t u r e r e v i e w t i restorative design (stress reduction through environmental manipulation) hospital design (support of technology with high functional emphasis) restorative design specific to the hospital environment filtered through: , existing precedents . specific user need analysis • modified by: . health care experience . design imagination d e s i g n i m p l i c a t i o n s j implementation site analysis: opportunities and constraints* ' program for site: » restorative and functional design vision: the master site plan design methodology flow chart chapter ii. restorative design: literature review . . definition. restorative design utilizes the healing power of landscape to improve the human condition. a restorative, therapeutic approach to a place assumes a perceived impairment of physical, mental or emotional well being and a desire, through design, to mend, renew, and/or heal. this approach to design accepts the widespread existence of stress in daily life and its potentially hazardous effects on health and well being. designing in a manner that reduces stress and promotes well being is the primary objective. "ther-a-peu 'pyii-tik" definition: "re•store" "ri-'stor" definition: •tic" function: etymology: date: provide/assist in a function: etymology: date: th give back, return, t adjective greek therapeutikos, to attend, treat cure, take part in healing process transitive verb from latin restaurare to renew, rebuild century o bring back to a former, original state the hospital is utilized as a place of healing, a place to cure and mend. it also serves, for many, as a place to spend final years in comfort with the help of others. patients have the responsibility to learn both from caregivers and from their inner selves independence in the face of newly diagnosed diseases or injuries. they have the responsibility to find wholeness out of broken pieces when faced with tragedies and medical hardships. families and visitors affected by interactions with loved ones must find a new sense of balance in order to cope with tragedy or increased responsibilities. health care providers, faced with crises in management, staffing, and patient numbers must somehow draw strength from the hospital environment (cooper-marcus and barnes, ). it should be noted that restorative design is poorly understood by the public and, as well, by many designers. the assumption is that the goal is simply to create a serene atmosphere suitable for tranquility and harmony. the assumption is that restorative design is primarily concerned with gardens and greenery. while these may be important elements in the design, the active design for stress reduction ivolves far more complex issues, and touches on a variety of design issues including, but not limited to: • urban and rural design, community management and planning, sustainability issues, road and built environment construction, open space landscape preferences. restorative health care facility design aims to create an environment that actively assists health care providers, visitors, and patients in - - relieving stress, increasing comfort, reducing fears, and facilitating a sense of well-being across groups of users. the restorative landscape may occur naturally or may be designed, with varying degrees of intervention visible (kaplan, kaplan and ryan, ). key elements of restorative design, as derived from a review of available literature, are outlined below. a restorative landscape requires the presence of certain significant elements, most notably: • inherent familiarity: designing for the restorative place demands recognition that across cultures, humans have an inherent connection to certain landscape types and forms. these archetypal landscapes can be utilized to create a place that is fundamentally comfortable, familiar, and healing (condon, ) . • legibility: a legible design allows the user to know instantly where he/she is in the world, and to feel comfort in that knowledge. this includes simple wayfinding and sense of safety and security, but also involves a greater sense of place and belonging, as will be discussed (kaplan, kaplan and ryan, , lynch, ). • natural elements: as the research will show, physical and visual access to nature (vegetation, habitat, water, etc.) has significant restorative properties (kaplan, kaplan and ryan, , kellert and wilson, , ulrich , et al.). • accessibility: both perceived and actual accessibility are required for a design to be truly restorative. accessibility includes universal design principles. it also includes issues of visual versus physical access (lewis, ). access by surrounding community members should be addressed as a means of enhancing social support (ulrich, ). a restorative hospital site enables on-site access for patients, visitors and staff as well as a strong social and environmental connection to its surroundings, thereby enhancing the possibility for social support and a sense of belonging (ulrich, ) . . . inherent familiarity: the archetypal landscape. the geographer jay appleton, in the experience of landscape, identified a fundamental preference in landform type: the prospect-refuge scenario. landscapes that allow simultaneously an opportunity to see as well as hide are pleasing and comfortable. ideally occurring in combination, prospect (mountain, sea) and refuge (cave, forest) were considered important givers of power to the individual (appleton, ). certain landform configurations serve as archetypes, still eliciting preference although largely void of their primary function. prospect and refuge, important when man lived as predator and prey, remains highly desirable. the universal attractiveness of parkland or lawn is said to evolve from the savannah, man's early habitat (fleissner et al, ). situated on the edge of a forest, man was secure in the knowledge that retreat into the woods was possible, as was exploration into the savannah for hunting and gathering. the fertile river valley, as the cradle of early civilizations, is seen to give a region power and ability and - - abundance. meadows, ravines, caves, and hillsides are all landform archetypes capable of eliciting various fundamental emotional responses. christian norberg-schulz, an architectural theorist, referred to domain, path and node as archetypal elements of human settlement (norberg-schulz, ). kevin lynch, an urban theorist, wrapped his assessment of archetypal form around the task of legibility and imageability; by identifying districts, paths, nodes, edges, and landmarks he was primarily concerned with wayfinding and memory (lynch, ). stephen and rachel kaplan (environmental psychologists), along with robert ryan (landscape architect), explained preference in terms of information gathering (kaplan, kaplan and ryan, ). the shared belief of these authors is that man is innately drawn to certain landscapes: optimal conditions become hardwired in our collective brains and exposure elicits an expected response. attempting to "create" therapeutic spaces without the recognition of powerful inherent preferences sets up an impossible task for a designer. patrick condon, landscape architect and professor at the university of british columbia describes the volumetric open space, or clearing, as being perhaps the earliest constructed landscape (condon, ). allowing built structures (and/or mature trees) to create true spaces with depth and form is in sharp contrast to what condon describes as the "typical cubist leftover spaces created by situating modern buildings in the centre of landscapes" (condon, ). humans prefer and are more comfortable in landscapes that have recognizable volume and are not merely edges (condon, ). carving out settlements in the heart of forests, western ancestors were able to surround themselves with natural buffers while creating an inward focused community. early medieval hospitals directed views and activity toward an internal cloister space, protected from the harsh realities of the outside world (fairbrother, ). essentially closed to the community, these clearings, or volumetric spaces were designed to maximize protection from external social and natural elements. views were purposefully focused inwards (fairbrother, ). a sheltered and protected space, whether formed by natural or built forms, continues to be sought out by humans seeking retreat in a variety of forms: the fenced backyard, the mountain cabin, the sheltered ski lodge and the courtyard house. housing communities are often designed around a central, cloistered space. private, internal spaces within gardens are favored. while the inwardly focused clearing does not meet the needs of all users at all times, it does present as a significant form for introspection, reflection, and interaction. a contrast to the sheltered clearing is the image of the open pastoral landform, derivative of hunting and gathering as well as farming traditions. highly preferred across cultures by humans, this landscape offers comfort on a variety of levels. apart from the inherent prospect- refuge experience, evidence of stewardship in the pastoral landscape also increases preference (sheppard, ) . the knowledge that this is a landscape that can support life appeals to our biophilic nature (kellert and wilson, ) . . . legibility: the preferred landscape. in with people in mind: design and management of everyday nature ( ), kaplan, kaplan and ryan describe the great human contradiction: we need to know, but we don't want to know everything. humans need to understand. we understand environments that are coherent (orderly) and legible (containing memorable components that help with orientation). humans want to explore. we want to explore environments that are complex (richness of elements) and mysterious (the promise that more is out there to discover). people care deeply about information and the need to know. confusion is rejected; exploration is embraced. restorative environments are those that restore fatigued mental states through an appropriate balance of understanding and mystery. it is important to note, however, that the levels of information required by individuals vary greatly with past experience, age, circumstances in life and stages of health (kaplan, kaplan, and ryan, ) . in the hospital setting, a range of "understanding" is required in design. users under high levels of stress require simple, secure, and easy to read environments. a common error in design, however, has been to engulf the hospital in simplicity and transparency. not recognizing the need for humans to explore (physically and/or visually) has resulted in designs that under stimulate, thereby heightening feelings of depression, loneliness, and hopelessness (ulrich, ). hospital users (patients, staff, and visitors) require choices and options for wonderment, fascination, and visual/physical exploration (ulrich ) . this balance of legibility is a significant challenge for the restorative design. taking advantage of familiar, local patterns, forms and elements has been pointed to as a potential means of creating familiarity and legibility. examination of the local, or the vernacular, offers insight into preferential forms for potential users of a space. "...but above all, work on the site, stay on the site, let the site tell you its secrets" (alexander et al, , p. ) what of this region makes this place unique? what of this neighborhood exudes energy and life? what on this site references places of reparation, rejuvenation, and reclamation? the life-making and - perpetuating ability of the site and its context may be found in the minutiae, the details, the ordinary, and the overlooked. understanding the language of local life as exhibited in landforms, built typologies, vegetation and function of space enables the designer to create spaces that exude familiarity and comfort. beautiful landscapes are not necessarily comforting: they may be perceived simply as recreational spots. use of the everyday landscape can, however, create a beautiful as well as comforting and threatening image. "thoughts stray to the normal, fundamentally reassuring relationships and interactions of our lives" (hough, , p. ) . the vernacular has traditionally been described as "forms that grow out of the practical needs of the inhabitants of a place and the constraints of site and climate" (hough, , p. ). identifying this local "language" of landscape and building enables the presence of legible, understandable elements in the design. through use of the vernacular, levels of - - legibility can be altered depending on users and surrounding function. a high-stress treatment area, overloaded with the unknown, in which the patient suffers fear and loss of control, may dictate an adjacent area that takes full advantage of local vernacular to create a known, comfortable place of reprieve. to be able to sit in a garden or room that "looks just like home" prior to chemotherapy is preferable to lining up in hallways or lounges that look "just like a hospital". in contrast, patients confined to beds or wards would benefit from views that offer intrigue or mystery to contrast with monotonous institutional walls. wonderment over distant pathways or secret gardens below is preferable to pondering the number of ceiling tiles or watching the clock between pain medication dosages. achieving this balance of understanding with mystery is a primary goal of designing for comfort and legibility. it is not enough to simply surround the users in familiar, easy to comprehend patterns (for example, the easy to read urban grid system). designers need to ensure a significant amount of "mystery" in the landscape in order to allow imaginations to wander, fascination to build, and exploration (mental or physical) to occur. in with people in mind, mystery is explained as the promise that more information is available as one travels farther into the scene (kaplan, kaplan and ryan , a pathway that winds off into the distance to an unknown destination offers gentle mystery. a roadside embankment thick with underbrush with no obvious entrance offers heightened mystery, verging on fear. evidence of familiar, vernacular human signs (paths, benches, fence posts) intrigue the viewer by creating a sense of comforting mystery and the knowledge that others have come before. . . the call to nature: the living landscape. e.o.wilson states "the urge to affiliate with other life forms is to some degree innate" (kellert and wilson, ) . this "biophilia" is supported by a variety of researchers and theorists, kaplan being perhaps the most well known voice. humans have a fundamental preference for "living landscapes", alive with the evidence of biological processes. landscapes that feature water, food, birds and animal habitat, or open pastures suitable for livestock give a sense of being able to support life. we are reminded of our connection to the earth, and of its life-giving properties. medieval hospital garden designers recognized the benefit of birds and water in the healing landscape (fairbrother, ) . modern day researchers have afforded us quantitative evidence of the healing value of such elements (kaplan, kaplan and ryan , gold , ulrich / / , et al). bringing legitimacy and urgency to the benefit of integrating the natural environment with hospital settings is mounting evidence that physiological and psychological status of patients (and staff) is highly responsive to their surroundings. dr. roger ulrich (environmental psychologist) at the college of architecture, texas a & m university, college station, texas, has focused much of his career tracking patient responses to various environmental design features. ulrich works closely with health care professionals to measure such patient markers as: • psychological reactions (mood, well-being), - - • physiological reactions (blood pressure and pulse, muscle tenseness, levels of stress hormones, brain wave activity, skin conductivity), and • behavioral indicators (frequency of verbal outbursts, sleeplessness, alcohol and drug abuse, degree of compliance with therapies, requests for assistance from nursing staff, and length of hospital stays). ulrich has observed that traditional design often works counter to both patient and care provider needs (ulrich, ). striving to meet the goals of functional efficiency, cost containment, and codes, designers have created "hard" and institutional-like spaces when what is needed, according to ulrich, is a place that offers support and comfort. patients are under varying degrees of stress. situated in a foreign environment and often facing reduced physical capabilities, painful and/or unknown (frightening) treatments and an uncertain future, they can become overwhelmed with a sense of helplessness and feelings of anxiety and depression. ulrich has reported a decrease in stress indicators following exposure to "positive distraction", primarily natural elements. with his colleague russ parsons, ulrich has showed that absence of "positive distraction" and subsequent sensory deprivation can have deleterious health effects for the hospitalized patient and caregiver. their work has shown that not only can restorative design reduce stress but that its very absence can increase stress and cause harm. positive distraction providing the most benefit is identified as: . natural elements such as trees, plants, and water; . happy, laughing or caring human faces (opportunities for programming), and . birds, small habitat and domesticated animals (ulrich and parsons, ) . continuous exposure to stress has the potential over time to cause permanent damage, interfering with self-coping mechanisms and, in the extreme, further depressing immune systems, making them more vulnerable to illness. the incidence of nosocomial (hospital-derived) infection and illness has traditionally been linked to cleanliness and procedures, but current thought shows a significant link to stress by situations and surroundings (ulrich, ). while the traditional concern in hospitals is for the patient population, it should be noted that staff are not immune to the effects of stress and anxiety. working in difficult, emotional situations and often with little control or reprieve, caregivers experience high rates of stress-related illness with ensuing lost workdays and reduced productivity (ulrich, ). caregivers under stress directly impact on patient well being given the close, dependent relationship. a "nature restoration hypothesis" has been proposed that natural views of trees and other plants tend to reduce stress and anxiety. informal, natural, woodland type settings are preferred for their restorative benefits (kaplan, kaplan and ryan , gold , ulrich / / ). the use of water in healing landscapes is evident throughout our documented history. recent studies indicate a measurable improvement in physiological well-being as a result of negative ions in - - the surrounding moving water molecules (parsons, ). the restorative benefit of interfacing bird and animal habitat with patients is also well documented. despite his strong work in the area of visuals, ulrich joins other researchers in noting an increased therapeutic benefit if physical interaction, in particular with domesticated animals, is facilitated (ulrich, , lewis, ) . research into association with companion animals has shown positive healing results. clinical trials have indicated an improved -year survival rate post myocardial infarct for patients with close companion animal contact (bustad, ). in healthy individuals (control subjects), this same research showed lasting reduction in sympathetic (flight or fright) responses. in short, stress reduction through interaction with animals occurs regardless of stage of health. caring for other living things is an important tool for warding off the inevitable helplessness and hopelessness that threatens to accompany ill health (beck and katcher, ) . the reciprocal nature of the relationship allows people to be rewarded by feeling needed. many times the act of feeding an animal is often the first real connection that a child makes with care giving, and the development of empathic responsibilities within the social world. as a person ages, the role of care giving changes. with the elderly person, a task as simple as setting out some crumbs for the birds may be enough to continue or rekindle positive, empathic feelings that come with providing care for another living being. . . physical & visual connections: the accessible landscape. the accessible landscape is one that permits and encourages movement and exploration (visual and/or physical) by a wide range of users. ensuring a high level of real and perceived comfort of movement for patients, staff, and visitors enhances the restorative benefits of the landscape (centre of universal design, ). ideally, design should be equitable and democratic. the same means are provided all users: identical when possible/equivalent when not. the widely accepted principles of universal design ensure that no single user is made to feel like an afterthought (centre of universal design, ). a balance of easy wayfinding and access with opportunities for challenge and mystery should be incorporated in the design for all users, accommodating a wide range of individual preferences and abilities. the principles of universal design are outlined in appendix i. providing options and choices of movement within the landscape (within small gardens as well as within the larger open space) is important to give users a sense that the space was designed with them in mind. patrick mooney, landscape architect and professor at the university of british columbia, well known for an influential study that measured alzheimer's patients responses to the exterior environment (mooney, ) is quoted as stating that "giving people choice gives them dignity" (stevens, ). a restorative landscape not only allows entry, but encourages exploration (kaplan, kaplan and ryan, ). access to and through a landscape is also dependent on a sense of safety and security. designing for real and perceptual security without resorting to widespread target hardening (lock and key) presents a unique - - challenge. crime prevention through environmental design (cpted) is a means of exploring this challenge that was developed in the 's for use by architects, city planners, landscape architects, interior designers, and law enforcement personnel. cpted contends that by designing the physical environment in a manner that positively influences human behaviour, it is possible to create a climate of safety at a community or site level. as a -hour facility, the hospital requires a design strategy that allows for safe passage by staff and visitors to and from cars/buses/buildings/programs at every hour of the night. the principles of cpted contend that, while there are occasions in which locked gates and fences become necessary, much can be done to heighten safety and security through manipulation of the external environment and its components (rcmp, ). cpted hinges on the belief that if a place appears under good stewardship and measures are taken to promote legitimate activity, this will have the dual impact of discouraging unwanted behaviour and heightening existential security. the cpted principles are outlined further in appendix ii. designing for accessibility and security should not be limited to the site level. at the broader, open space planning, scale, clustering hospitals with schools, community parks, daycares, and civic buildings increases visibility and accessibility. the connection of schools and seniors' housing seems a logical and sustainable method of crossing age barriers and breaking down destructive mythologies. a more concerted effort to program "private" hospital grounds for use by the public (and, likewise, to facilitate use of surrounding amenities by hospitals) would have the added benefits of enhancing stewardship and offsetting long-term maintenance costs. connecting hospital open space programs with community greenways, cycling routes or pedestrian walkways will enhance stewardship, positive use and a sense of belonging. if an open space is to satisfy the needs of the community at large, the physical form becomes an important consideration (wright, braithwaite and forster, ). too often public open space is designed as patchy, disconnected units with little continuity: a soccer field at the end of a block, a fenced school yard, an isolated skateboard park, a distant bicycle trail. for open space to be successful it must be close and accessible. "whenever possible, these smaller spaces should be linked to larger park areas through the use of open space corridors to form a complete network system of open space within the community" (wright, braithwaite and forster, , p. ) . accessibility: an evaluation process. private places are often filled with remarkable staircases and grade changes that, although visually appealing, are inaccessible to a large portion of our population: the aged and mobility impaired. public space designers too often take the unimaginative route of integrating obvious ramps and paths that are not only lifeless, but that draw attention to the fact that the less-abled are "different". confidence and comfort are chipped away every time a less abled person is "told" by designers that they are different, and require special equipment only for them, and special entrances only for them. if unique equipment is required to enable users, a design that traverses ability should be utilized. the challenge for hospital design is to create a place that combines desired - - elements of entrance, transition, and movement without second-thought additions for access. questions to be asked during the design process may include: • is the place accessible to all people, regardless of age or ability? are paths accessible for walkers, wheelchairs, persons with limited mobility, and the very young to very old? does the design create special places on the site that relegate the less able to status of observer only? • are pathways connected in such a manner as to allow short, protected walks (patients requiring health care provider supervision) as well as more expansive walk experiences (psychiatric patients)? • are ground plane features —plantings, water features- accessible (for touch, sight, and smell)? garden features may include vertical structures with plantings that climb up to people. beds may be raised for hands-on interaction. are color palettes accessible to those with limited vision? color massings are more visible to aged retinas. • are there areas easily accessible by hospital staff that permit the combination of landscape and therapy programs (physiotherapy, cardiac rehabilitation programs, occupational therapy, horticultural therapy, etc) ? • is there sufficient above ground support for users, and places to rest? the lack of rest stops and/or hand supports can create unpleasant and uncomfortable experiences for users that will prevent repeat use. • does the design accept that all areas of the hospital grounds must be accessible to emergency caregivers, fire services and maintenance workers? • is accessibility negated by exposure? are open areas protected from the elements? several conditions or stages of health demand extra protection from ultraviolet light exposure (psychiatric, pregnant, paediatric, cancer, burns, etc). conclusion. wrapping a hospital landscape in restorative benefits while still maintaining a functional, realistic program is the challenge for designers. despite the increasing abundance of restorative design theory and data, modern hospital precedents all too often get lost behind the purely functional, leading to lifeless, cold, controlling places filled with signage that compound rather than reduce stress (ulrich, ) . the expanding field of restorative design seeks to take advantage of the healing power of landscape in order to improve human condition. four primary elements have been identified as contributing in a large way to the restorative nature of a place: inherent familiarity, legibility, natural elements, and accessibility. finding ways to incorporate these elements into a design, whether in the public or private realm, will facilitate stress reduction and healing for humans at all stages of the health continuum. in the hospital environment, this means improved well being for patients, staff, and visitors as well as visiting community members taking part in outpatient programs, volunteer/stewardship programs or recreational opportunities. - - chapter iii. inquiry into status of hospital design introduction. many acute care health care facilities are designed according to a cookie cutter image of the functional institution situated on a generally lackluster tract of land. function and economics continue to be the overriding motivators behind any new facility with little to no exploration into imaginative or creative design solutions, despite the growing body of research into restorative design (cooper marcus and francis, ). a review of the literature (or lack thereof) reveals a submissive tolerance of the status quo on the part of designers. society has rejected the image of large-scale, block social housing and yet we continue to build similar blocks to "house" the sick. programs aimed at health prevention, maintenance and promotion, based within the confines of existing modernist hospital structures, struggle under the weight of the surrounding architecture and "dead" landscape space. the increasing awareness of the effect of exterior environment on health would seem to demand a strong attention to landscape design for health care facilities. this, however, has not been the case. in an issue of landscape architecture that focused on "healing gardens" (january ), roger ulrich is quoted as follows: "interior designers have taken the lead and architects are coming up to speed. that's not been the case for landscape architects" (dannenmaier, ). in the seven years since that statement was made, it is arguable that landscape architects continue to lag behind in terms of both inquiry and design. claire cooper marcus, an important voice calling for a revisitation of tired hospital design guidelines, laments the difficulty of affecting change in a system that is unwilling to allocate funds for unquantified benefits to patient recovery (cooper marcus and francis, ) . as discussed in the previous chapter, these benefits are being quantified by an increasing amount of research. understanding the direction, or arguably lack of direction, for health care facility design by landscape architects demands an awareness of the historic evolution and the current factors affecting change and growth. . . history of hospital design: an overview (a) monastic cloisters: early recognition of landscape power. historically, the first western "hospitals" took great advantage of their physical layout, assuming a strong connection between the healing process and the natural environs. the early benedictine monasteries situated patient care rooms around a central cloister garden with easy views to the physics gardens planted with roses, lilies, sage, rosemary and other herbaceous plants used to concoct early cures (fairbrother, ) . the - - cloister connection between rehabilitation and a view to life-giving nature was deemed vital and necessary. these early medieval hospitals generally featured a healing walkway, designed and choreographed to provide specific restorative experiences along the way: exposure to water, to wildlife, to fall color, to spring blooms. water was an important and vital component of medieval monastic gardens. in the earliest cloisters, the centrally located well was used for sustenance, bathing and religious purposes. the central location also eased the labor of irrigation. over time, these water features took on greater prominence and decoration with the lines between symbolism, function, and aesthetics blurring (fairbrother, ). walks in the connecting gardens were prescribed as diligently as were crushed herbs and ill-tasting tonics. "the experience of walking around the edges of the garden, enjoying it from the covered space, smelling the fragrance of herbs, feeling the warmth of the sun, and hearing the trickle of a central water feature contributed to the serenity of these sanctuaries" (parsons, , p. :•»-<!* /#-try- ,;•-.-~r'~, \..,r—— " "•;>;' v s . v, ) . the dark ages moved the study and practice of science and technology behind monastic walls. medicine and, subsequently, care of the sick and dying fell to the religious orders. physic gardens, referring to the combined planting of flowers and medicinal herbs, became a central and important component of the monastic garden space. throughout the middle ages, monasteries gave sanctuary to native plants and introduced herbs. the abbey of st. gall in switzerland (ad ) is characterized by ruth wrensch in the history of herbs as a vital protector of special and medicinal plants, preventing mass depletion and extinction of several species (wrensch, ) . it is recorded that the monastery of st. gall had a medical herb garden, rooms for sick people, a pharmacy, and special lodging for a physician. this is considered the first western example of a hospital (mayeaux, ) . under the benedictine order, monasteries quickly expanded the trend and by the t h century many monasteries in europe had attached hospitals (mayeaux, ) . an important building in medieval monasteries was the early isolation hospital with an attached chapel, bathhouse, kitchen, rectory and medicinal garden. the physician's house was located nearby - - with its own physic garden of essential medicinal herbs, new introductions, and several small sick rooms for the acutely ill. medicinal plants such as sage, fennel and rosemary, were situated outside the infirmary widows and entrances in order to encourage patients to connect the "cure" with nature and therefore a higher power (wrensch, ). the use of "man-made" medicine was given religious approval through this ever-present and very visual connection with the earth. fragrant and visually aesthetic flowers and shrubs were included in the early physic gardens. debate over possible medicinal use of roses, lilies, peonies, and gladioli may hide the possibility that medieval man simply felt the sensorial impact itself was worthy of inclusion in a healing garden. as originators of botany, the early greek states produced tremendous writings on common plants and specified or hypothesized medicinal purposes (wrensch, ). behind medieval monastic walls, this field of botany became one and the same with the field of medicine. plants were mandatory in the attempt to cure any illness. indeed, there were remedies for many complaints not treated today. medieval herbal concoctions existed not only for such complaints as fever, headache, insomnia, and more serious illnesses, but also for "immoderate laughing, forgetfulness, excessive crying, and fleshy lust" (fairbrother, ). written manuscripts produced during the middle ages outline specific planting schemes and arrangements of buildings, indicating a strong belief in the power of landscape to affect outcome of patient care. this perceived power is further illustrated in written instructions for patient programs and activities. "the sick are encouraged to spend time in the orchard, breathing the scent of fruit and flowers, so that their senses can be refreshed. where the orchard ends, the garden begins. here too a lovely prospect presents itself to the infirm brethren; they can sit on the green edge of the great fountain, and watch the little fishes challenging one another, as it were, to war-like encounters, as they meet and play in the water." (talbot, alice-mary, n.d. ) it is interesting to note that a study conducted by cooper marcus and barnes ( ) revealed very similar requisites for healing gardens as those utilized in early monastic cloister gardens: greenery, fragrance, bird sounds and privacy (cooper marcus and barnes, ) . the cloister design of these first hospitals had a purpose: to direct patients and healers toward the cures of nature. the connection between mind and spirit and body was clear. the connection between man and nature was clear. monastic reforms following the th c saw a dramatic decline in gardens produced by non-secular entities. and, certainly, as the figure - : mass-void for monastic cloister design - - domain of health care found its way to a medical profession infatuated with the provability of science and technology, natural settings for treatment diminished. (b) community-based treatment: hospital as death house. prior to the mid th century, the focus of health care was decidedly home and community-based. with good reason, patients were treated outside the hospital as much and for as long as possible. the role of the hospital was primarily to prolong life and ease the pain of dying. admission to hospital rarely included a discharge to home: the concept of designing for "healing" was largely non-existent. hospitals were forbidden, segregated dark corners of the community (cooper marcus and francis, ). the radical revision of medical theory and practice that followed the discovery of germ theory gave hospital designers an entirely new focus and purpose. it became possible to treat, and even cure illness and injury rather than simply prolong life. health care, rather than palliative care alone, was born. nurse florence nightingale put forth the concept of antisepsis in in her "notes on hospitals". she showed that hospital mortality rates were three to five times higher for hospitalized patients than those who had been treated at home. her work with reform of sanitation and cleanliness in hospitals spurred a new awareness that the form of structure in which health care was undertaken was vital (bynum, ). the discovery of bacteria by louis pasteur revolutionized the medical field, and with it, the image and requirements of the hospital as place. as the "architect of germ theory", his discovery of vaccinations found immediate success in the treatment of such devastating illnesses as anthrax, chicken pox, and cholera. robert koch continued this inquiry and in was able to prove the infectious nature of the tuberculosis bacillus, another important milestone. now, individuals could understand that they became sick for a reason, not just by chance. and, most importantly, that health care could prevent, treat, and cure illness (bynum, ). (c) the birth of "health care": design reform. the realization that everyday persons could actually recover from the ravages of infection and injury brought new reform to the design of facilities for patients. the value of creating a homey experience replete - - with fresh air, sunlight, proximity to nature and strong indoor - outdoor relationships found its way to late th c hospitals. figure - : pavilion style hospital. in the early c , wheeling patients outside the pavilion for "afternoon sun and fresh air" was considered a mandatory nursing function. generally two-three storey buildings connected by open walkways, this "pavilion-style" dominated new hospital construction well past the major world wars. it is no small wonder that the desire to surround the ill with lush exposure to nature coincided with attempts by park designers (most notably, frederick law olmstead) to "heal" the public with spacious, heavily designed parks. turn of the century reforms are perhaps most evident in british columbia on the grounds of riverview (psychiatric) hospital in port coquitlam, b.c. early administrators of this large provincial psychiatric facility saw, in , an opportunity to create a unique facility that would benefit not only patients but the community as well (city trees, ). the design included built structures as well as a working farm, gardens, orchards and an arboretum of over trees. with the help of patients, they created a living heritage by planting trees from seven continents. today, with buildings closed or in limbo, riverview has a greater role as a backdrop for the film industry than as an institution for psychiatric care, but there is little doubt that the site is a unique gem to be protected. riverview's trees comprise western canada's most significant arboretum and the site is a vital link in a green corridor between the fraser river and burrard inlet with outstanding habitat and educational value. figure - : image of riverview psychiatric hospital grounds, port coquitlam, b.c. - - unfortunately, these reforms to hospital design did not survive past the second world war. a western world dealing with rapid changes in technology put health care reforms secondary to cost-efficiency and functionality. "in acute care hospitals, the design emphasis shifted towards saving steps for physicians and nurses, and away from attention to the environments patients experienced. gardens disappeared, balconies and roofs and solaria were abandoned, and landscaping turned into entrance beautification, tennis courts for the staff, and parking lots for employees and visitors. the prestige of the big city teaching hospitals with their gardenless patient environments set the styles for all the others" (gerlach, kaufmann and warner, ) . (d) modernist domination: the health care "machine". certainly the modernist fascination with the machine affected more than hospital design. it is curious, however, that while the form of modernism has been soundly rejected in other areas of public design it continues to mold the way in which communities perceive and approach health care. early skyscraper designers battled with european bauhaus adherents to create the perfect monuments to technology and man's power over nature. expensive, monumental, enclosures of space, these buildings were copied in a hundred cities and more, not only as office towers but in the modern design of all commercial and public structures, including supermarkets, motels, and institutions. while on the one hand, perfect expressions of medical science's desire to thwart and dominate nature, they stand as the purest contradictions of the very fundamentals of health care. disconnected and segregated they loom dangerously over the community with acres of concrete, stone and glass. the living nature is relegated to a struggle for life in geometrically spaced gratings. in the modernist world, more is more. more is power. more is better. jane jacobs launched an attack on modernist city planning, and design in her book the death and life of great american cities (jacobs, ) . she criticized the modernist abandonment of the traditional relationship of houses, sidewalks, and street and their replacement with high-rise apartment blocks set in 'parks'. these new forms of design broke down the traditional control of criminal behaviour and destroyed the sense of community identity and stewardship. the ability of residents to watch the street and the presence of people using the street diminished as built structures turned inwards and upwards. casb in point: social housing. several sociologists have agreed that the end of the modernist domination in public architecture and construction occurred in when the crime- infested, vandalized, urine-soaked pruitt-igo housing development in st. louis was blown up. once standing as a classic example of social engineering, the realities of life in this modernist structure caused its - - demise: high crime, the difficulty of policing, raging substance abuse, spiraling levels of morbidity and mortality among residents. the pruitt-igo towers, in east st. louis, consisted of story-high buildings with grounds on the first floor for community activities. because the grounds were common and disassociated from units, residents could not identify with them. the complex never achieved more than % occupancy and was destroyed only years after construction (brossman et al, ). pruitt-igo was replaced with duplexes, row houses and single- family structures. a renewed social sense of responsibility in the late 's- 's resulted in a rejection by many designers and planners of the modernist typology once thought the tool for social change in impoverished communities. unfortunately, this belief in the ineffectiveness of modernist architecture and landforms is slow to cross into the realm of health care facility design. pruitt-igo versions of community hospitals exist across the north american landscape. above- figure - : demolition of pruitt-igo modernist social housing structures in . http://www.eslarp.uiuc.edu/ left- figure - : prototypical modernist hospital structure, current day. - - http://www.eslarp.uiuc.edu/ . . current trends affecting health-care facility design. after a decade of slow growth, health-care design and construction is poised to expand substantially in this first decade of the new millennium. the baby boom generation, now ranging in age from to years, is influencing a wave of new and remodeled facilities. several factors are influencing, or are poised to influence, the shape of future health care facility design. "another building boom in health care will occur within the next five years, expanding capacity to meet the needs of the baby boomers and their aging parents." - futurescan : a millennium forecast of healthcare trends - . . . expanding definition of health the world health organization, the united nations specialized agency for health, was established on april . who's objective is the attainment by all peoples of the highest possible level of health. • "health is a state of complete physical, mental, and social well-being, not merely the absence of disease or infirmity. health involves emotional, social (cultural, environmental) , and physical well-being and is determined by the social, political, and economic context of lives as well as by biology" (world health organization, ). over the past twenty-five years, the understanding of what is meant by health has evolved and continues to evolve. the who constitutional definition has not been amended since , however, in , the who further ^refined' its definition in the following manner: • "health is seen as a resource for everyday life, not the objective of living; it is a positive concept emphasizing social and personal resources, as well as physical capacity" (world health organization, ). the federal ministry of health in canada adheres to this definition in prepared documentation regarding promotion of public health as well as programming of institutional treatment. social isolation, poverty, ethnicity/cultural diversity are all noted as significantly related to quality of health. social support during times of illness or wellness has, in particular, been recognized as vital to health promotion. • "all families who are having and rearing children need support--from friends, relatives, neighbours, and more formal services. for parents, particularly women, who are isolated and facing a number of other stresses, support is invaluable" (health canada, a). health canada is also becoming more open in acknowledging that the natural environment is a key influence on health. • "many factors, including family history, social or financial status, physical environment and personal lifestyle choices influence individual health. by making canadians more aware of dangers to their health, protecting them from avoidable risks and encouraging them to take a more active role in their health, health canada fosters a - - healthier population and contributes to a more productive country" (health canada, b). this holistic definition describes the ideal state on which health policy, programs and dollars should be focused. acceptance that health is more than just the absence of disease is a significant move towards more community-based programs as well as higher levels of public participation in the planning of health care facilities. "healthy community" programs are becoming integral parts of the municipal wheel. . . . acceptance of therapeutic research in , an informal, annual forum of professionals was created to explore how the design of the physical environment can positively contribute to the quality of health care. the goal was to enhance awareness of the impact environment has on health as well as actively envision new, creative possibilities for the health care landscape. in november of , leland r. kaiser, ph.d. (a professional consultant and self- professed 'futurist') was the keynote speaker for the sixth symposium entitled "design: contributing to the quality of health care'. he observed that health care facilities have traditionally been designed to encourage passivity and non-involvement, and to reinforce the idea of sickness over regeneration. too often, kaiser stated, the hardware—the machines, the diagnostic devices, even the doors (with their "keep out" messages everywhere) set the tone of a treatment area in a way that cannot help but make patients define themselves as "...sick, dependent, and far removed from everything that seems comfortable and nurturing" (centre for health design, ) . kaiser focused his priorities for reform on the need to involve communities, including patients in the planning and design phase. he encouraged designers to become 'advocates' for the hospital landscape. at this same conference, the formation of 'the centre for health design' was announced, a non-profit organization established to guide and direct the symposium's activities and spread the message of reform to a broader audience (centre for health design, ). the centre continues to this day with over , members (design professionals, health care executives, practitioners and product manufacturers) committed to the use of design to improve the quality of health care. annual speakers range from ralph nader, dr. patch adams, landscape architects marni barnes and claire cooper marcus, futurist russell coile and other high profile individuals (centre for health design, ) . a strong emphasis is on the advancement of evidence-based design, such as the work being done by roger ulrich and others. "evidence-based design is research-informed and its results not only affect patient medical outcomes, but also staff satisfaction and facility operations. it looks at building design not only as the physical space, but includes the total sensory environment of sight, sound, touch, and smell" (centre for health design, ) . "we are convinced that with more persuasive information as to their benefits, many more hospital staff would encourage the use of outdoor spaces for healing and stress reduction" (cooper marcus and barnes, ) . - - . . . e m e r g e n c e o f i n f o r m e d c o n s u m e r s the current british columbia government is "discussing" the possibility of closing and/or modifying several community hospitals in the province. hospitals, in kind, are responding with vigorous defenses. the implication for designers in both instances is a need to create hospitals that are wanted, are welcoming, and that give evidence at first glance of their "healing capacity". in the new health care environment, hospitals and health systems may discover a need for simple competition on quality, exemplary facilities and centers of excellence. a hospital's very survival may be dependent on how well it competes in the "market". . . . changing demographic an aging demographic in north american, coupled with health care technology that is expanding life expectancy is changing the face of our communities. as well, medical advances are transforming acute illnesses into chronic illnesses with near to normal life expectancy. disability that often accompanies chronic illness (heart disease, arthritis, diabetes, aids, chf, etc.) must be accommodated for in the design of public and private spaces. the field of health-care design is also responding to society's increasing cultural diversity. this is already evidenced physically in signage, the use of icons and symbols for communication. creating spaces that address the complex needs of a wide range of users will be an increasing challenge. . . . industry consolidation/changing decision-makers in the american system, the independent free-standing hospital is unique. in the face of current financial challenges, health-care facilities are resorting to consolidations, acquisitions and mergers to achieve their goals, and are creating a corporate health-care model. canada is faced with its own challenges as governments vacillate between regional and centralized models of control. the threat of privatization of health care in canada will have significant impacts on new hospital design. the site of this thesis project is a unique political test case in british columbia. private rather than public contractors are being utilized in the early stages of construction (demolition, at this point) with significant ensuing uproar within public sector unions. discussion has also revolved around the possibility of sharing responsibility for the hospital operations between the government and private sector. . . . consumerism and retailing in the coming years, a continued rise in the population, combined with the idiosyncrasies of older and better educated baby boomers, will drive the demand for health-care facility construction. physicians will be confronted by information-laden patients who have done their research on the internet and will want to cross-reference with medical experts. the hospitals of the future will provide areas where doctors and patients together can utilize electronic access to the latest medical knowledge. - - at the same time, baby boomers are a group of individuals who seek personal choice and a sense of control over their environments. they are not satisfied with sharing a room with or more other patients. an increase in the demand for private rooms, and rooms that enable family members to sleep over will change the architecture of hospitals. retailing is becoming key to the delivery of health care. the inclusion of commercial opportunities within the hospital complex is attractive to patients as well as health care professionals. visitors to the hospital also take advantage of pharmacies, convenience stores, restaurants and coffee shops within the hospital complex. a greater focus on the power of retail outlets to draw "clients" will expand the existing, traditional amenities: cafeterias will become cafes open to the public, the traditional gift shop will feature local work by artists and craftspeople, and visitor business centers and child-care services will be provided. finally, hospitals increasingly will be valued for connecting to their communities in ways similar to the police and fire departments. community- centered hospitals will reach out to serve their patients and neighbors, contributing directly to their surroundings. lecture halls once reserved for teaching and medical rounds will be the site of community instruction on health care issues (futurescan, ) . . . . human capital: rising competition the current shortage of both doctors and nurses is not a short-term problem. a tight labor market and the aging of the workforce make "human capital" all the more scarce and valuable. incentives to recruit new professionals alone cannot solve this problem. health-care designers will be required to envision facilities that can provide excellent care with less staff. as well, providers will compete by design to make new facilities more attractive for staff recruitment and retention. this will apply not only to on-site amenities but off-site connections as well (easy access to transit, ease of parking, nearby recreational facilities, etc.). canadian nurses recruited to work in american hospitals report great satisfaction in the purposeful design of spaces for their professional and personal use, e.g. running tracks on-site, gym facilities, staff gardens, -hour restaurants. . . . emergency preparedness hospitals have long been equipped with emergency preparedness protocols and disaster coordination programs. since september of , however, the increased fear of bioterrorism has added new elements of concern: early detection, preparedness, and response. the designer's role in this process will be to plan strategically with the client for responding both operationally and physically to an emergency. this is not a new role but it will likely take on more urgency since recent events. cpted (crime prevention through environmental design) issues that address personal as well as communal safety will be paramount in design. . . . flexibility and redundancy canada spends about % of its gnp on health care, compared with % in the u.s. the rapid rise in health care expenditures since the early s is primarily a result of rising drug costs and the provision of more complicated medical interventions and technologies (health canada, ). - - hospitals are increasingly faced with the need to update, and renovate in order to accommodate for new/expanded technologies. the design of new hospitals must incorporate high degrees of flexibility. what could be an inpatient procedure today may be an outpatient procedure in the (near or far) future. any permanent change to the landscape of a health care facility should be able to respond to radical change in programming in the future. conclusion. a strong connection with the natural environment characterised some of man's earliest ventures into hospital design. monastic cloister hospitals relied heavily on the fruits of the landscape to supply healing sights, sounds, smells and experiences. as dependence on technology and science for treatment of illness grew, reliance on the environment, the landscape, and nature itself was quickly and definitely displaced. the environment became little more than inaccessible outdoor space, functional yet without healing properties. despite an increasing trend towards community-based programs and an expanding definition of health, hospitals continue, in many cases, to stand as examples of modernist dominance of man over nature. an evolving population, however, has begun to demand changes in the manner in which health care is delivered. an economic crisis in health care delivery demands that any proposals for altering the design of facilities should be reasonable, realistic, economical, and sustainable, as well as restorative for all intended users. - - chapter iv: applied restorative design: principles and implications introduction. therapeutic design incorporates principles that aim to reduce stress, promote wellness, and actively facilitate the healing process. restorative principles are not limited to design of health care facilities, however this inquiry finds its focus in the hospital setting. designing in a way that enhances health and well being for patients, visitors, staff and visiting community members is the goal of these principles. restorative design is often mistakenly thought of as designing for the meditative, quiet garden. in cases this may be true. a truly restorative design, however, is one that allows diversity in behavioral and experiential programs, allowing each user to move within and beyond their own comfort level dependent on unique needs. the approach to restorative design proposed here involves two major stages. firstly, the landscape is viewed in its entirety and global restorative principles are applied. this is done either through the creation of new spaces and features or simply by the enhancement of identified opportunities. the second stage involves a review of the intended users of the site and their specific needs for restoration. this approach should create a hospital landscape that has a restorative "foundation" as well as opportunities for development of user specific spaces. a flowchart that simplifies this process is featured at the end of this chapter on page . . global restorative principles & design implications the four following principles, drawn directly from preceding literature review, are global in that they can be applied to any site, public or private, in the effort to design for stress reduction. these global principles all have at their core an ability to reduce both physical and physiological stress. the ultimate goal of design would be to create a place that is, in a connected and holistic manner, archetypal, preferential and compatible, living and accessible. additional considerations for unique spaces will be dependent on specific users and/or objectives of space. the four identified global principles are: • design for the archetypal landscape. • design for the compatible landscape. • design for the living landscape. • design for the accessible landscape. . . principle # : design for the archetypal landscape. across cultures, humans have an inherent connection to certain landscape types and forms. these archetypal landscapes can be utilized to create a - - place that is fundamentally comfortable, familiar, and healing (condon, , appleton, ). example: looking out over a fertile pasture with the comfort of a forest at one's back: prospect beyond, refuge behind. design implications: . therapeutic design should be an early component of facility design and programming to influence: • open space configurations-avoidance of leftover open space • siting decisions-possible viewsheds • indoor/outdoor relationship (thereby influencing architectural form and configuration as well as interior design). . retain (and if necessary, create) open space archetypes of higher preference (the savannah, the valley, the meadow, the pastoral, prospect and refuge scenarios); . retain (and if necessary, create) simple yet powerful natural elements (the single tree, the allee, the bosque, the clearing). . recognize that a pasture as open space will have higher restorative value than a mowed play field or built open space. . use existing or new trees and berms to enhance feelings of enclosure and comfort. figure - : african savannah landscape. the savannah hypotheses predicts that those landscapes where humans spent time in their evolutionary past are inherently preferred. the savannah provides what is needed for survival: trees that give protection from the sun and can be climbed to avoid predators; long, unimpeded views; and frequent changes in elevation to allow for orientation (fleissner et al, ). - - figure - : african savannah project at toronto zoo. this design by the la firm of marshall macklin monaghan ltd. was chosen as a recipient of a national merit award in by csla. the intention was to take advantage of the human preference for open landscapes while at the same time providing important species habitat ((national merit awards, ). . . principle # : design for the compatible landscape. humans are most comfortable when they recognize and understand instantly where they are in the world. this is balanced with opportunities for fascination, wonderment, and mystery. in times of high stress, understanding should be high. at other times, a sense of the need to explore is desired (kaplan et al, ). a design that fosters a sense of control by offering choices and options for and against exploration promotes stress reduction and wellness (ulrich, ). the creation of a compatible landscape allows the user to interact according to his/her comfort level at any given time. this differs from the archetypal landscape in that interventions are more specific to the region, the program, and the identified users and their needs. example-high understanding: easy wayfinding in and out of the hospital complex. examjole—opportunities for mystery and wonderment: a view to a path that winds mysteriously out of sight. design implications: . facilitate control and choices • design rooms and windows to allow visual access outside for bed patients; • balance options for privacy with options for public experiences (open or closed, alone or together); • provide privacy for staff as well as patients; • make gardens or grounds accessible to patients; • give users control over exposure to outdoor elements (sun-shade, noise-quiet, urban-rural); - - • give users control over level of participation in program elements (to watch, to lead, to follow, to join in); • create a design that maximizes safety (real and perceptual). refer to appendix ii for cpted principles . facilitate range of understanding-mystery • partially obscure or frame views to open spaces using glass atriums, windows, doors to promote mystery = filtered understanding; • ensure views to a wide range of activities in open space. (examples include: passive and active recreation, teaching sessions, maintenance activities such as pruning and mowing, and animal grazing). . facilitate understanding. • use an ordering system for the design that clearly identifies paths, nodes, edges, and landmarks in order to promote wayfinding and memory; • use local customs, traditions, and aesthetics (in design or programming) that increase a sense of home and belonging. this may range from small scale design for site furniture to large regionally significant landscapes patterns (local grid lines, crop patters, rural or urban typologies); • provide views to regional landmarks, large and small, that tell a story of place and orient users to their whereabouts; • use easily understood artwork and structures on site. persons under stress show a higher preference for regionally familiar forms, shapes, images and prototypes. this is also noted in reactions to artwork. built structures, art, and site furnishings are more effective in reducing stress if designed using easily understood natural images and forms (versus abstract or ambiguous form/content) (ulrich ). the site of this project, abbotsford, british columbia, has already shown an awareness and acceptance of this preference for regional artwork. the abbotsford downtown business association launched a "bench art project" in . in conjunction with new streetscaping in the historic downtown area, this project was designed as a means to celebrate culture, history and dreams of the community. local artists were commissioned to create publicly accessible art that would be both familiar and pleasing. natural and regional forms dominate in the chosen benches. — r w i f rp- — _-.• a v ww f • figure - : abbotsford bench art program. - - . . principle # : design for the living landscape. humans find great comfort in physical and visual access to nature- vegetation, habitat, water, and pets. a landscape that shows evidence of its ability to support life reduces stress, satisfies man's need to nurture, and reduces feelings of helplessness and hopelessness (kellert and wilson, , et al) . a landscape high in natural, living elements is effective in eliciting positive feelings and blocking worry (ulrich ). landscapes alive with, not only evidence of birds and animals but also, human stewardship (human signs) increase comfort (kaplan, kaplan, and ryan, ) . examples: • a woodland garden that promotes biodiversity of birds and habitat. ' an edible landscape of orchards, gardens or crops. • a maintained and well-used garden tool shed. ' an outdoor space in which patients can walk pet therapy dogs (or visiting pets). • a body of water accessible (visually and physically) by humans and habitat. design implications: . open space planning should consider needs of birds and mammals as well as humans in order to enhance biodiversity: • enhance or create specific habitats for regional birds/mammals - consider greenbelt typology, vertical stratification, planting that attracts birds/insects/mammals near human spaces; . views to human and habitat "daily activity" should be maximized (humans: gardening, maintenance-animals: grazing, foraging, nesting); . opportunities to participate in hands-on gardening/stewardship should be facilitated; . use domesticated animals in open spaces ("sheep to mow grass"); . water bodies and features should be included throughout the design for benefits to both humans and wildlife; . "edible landscapes" (orchards, berries, community gardens) should be considered whenever possible to attract both humans and wildlife; figure - : restorative interaction with nature accepted in art. cassatt, mary young women picking fruit / oil on canvas x . cm carnegie museum of art, pittsburgh - - . design for strong indoor/outdoor relationships (bringing nature inside): atria with greenery, roof gardens, indoor water fountains, aquariums, etc. . provide choices for degree of participation with natural setting. • although wilson ( ) has shown a greater therapeutic benefit if users are privy to "hands-on" experiences, the research of ulrich and parsons ( ) shows a definite reduction in stress resulting from simple visual exposure to above elements. hospital users should be given choices along a hierarchy, ranging from: _> views to nature _» views to humans/animals in nature _> participation (passive) in natural setting: e.g. outdoor gardens with comfortable seating, etc. _» participation (active) in natural setting: e.g. gardening, running/walking, animal care, etc. . . principle # : design for the accessible landscape. humans are most comfortable in a landscape that is both visually and physically accessible and that recognizes the diversity of needs and abilities. recognition of all user groups and their diverse needs creates a more inclusive and accessible design (centre of universal design, , cooper-marcus and francis, ). a truly restorative hospital site enables on-site access for patients, visitors and staff as well as a strong social and environmental connection to its surroundings, thereby enhancing the possibility for social support and a sense of belonging (ulrich, ). welcoming community members to the hospital site may increase not only stewardship of the land, but also the sense of being "caretakers of our neighbours". as patients share space with schoolchildren, daily joggers, and community gardeners, the opportunities for interaction, understanding, and support increase. examples: • a hospital site that welcomes visitors to its cafeteria. • an open space shared by patients, local schoolchildren, visiting families, staff, community gardeners and recreationalists. design implications: . consider comfort and needs of wide range of users on site: patients, visitors, staff, and range of public users: • design for all users, regardless of age or ability - refer to appendix i for "universal design principles"; • involve as many users, in early planning stages, as possible; • provide convenient/inviting overnight accommodations for family members; • provide comfortable indoor/outdoor visitor waiting areas with movable seating; - - • provide a variety of necessary on-site amenities for users (shops/restaurants); • design outdoor spaces specific for staff members. encourage community use of hospital site: • design a friendly and welcoming street face; • design a hospital cafeteria that invites local community to visit and use; • encourage outdoor programs that foster patient /visitor/community member social interaction; • encourage outdoor programs that integrate rather than segregate hospital from immediate context (example: sharing open space with immediate neighbors); • design and program in a manner that will actively promote responsible and caring stewardship of landscape by community: • opportunities for interpretive trails, educational programs, and spontaneous place-making on site may enhance appreciation and protection of resources by community, • sustainable on-site practices may be utilized to enhance healing experience (on-site water collection as habitat- attracting marshland) and to create desired community destination worthy of protection. figure - : creekfield lake nature houston, texas. trail this kilometer long trail in brazos bend state park was designed to maximize accessibility. the trail was designed to be suitable for all types of disabilities. the trail itself is smooth asphalt with a graded flat surface. parking blocks line the side to keep users from veering off trail. displays along the path are designed for the sight impaired with information printed in large type and in braille. audiotapes are also made available. park benches have no side handrails so wheelchair users can easily transfer across. small raised sections of pavement signal an upcoming display without impeding wheelchairs. the trail is successful at showing a wide range of design features available to expand the equitable nature of a park (bondi, ). - - . consider physical connections to community destinations and amenities: • provide easy access to hospital by foot, car or bus; • ensure easy access to hospital by ambulances and persons in medical crisis; • connect on-site walking trails to larger recreational routes; • plan location of hospital open space in consideration of adjacent uses/resources. . specific user requirements and design implications. while it is accepted that within the patient, staff, and community populations there will be diverse needs and abilities, an assumption is made that all individuals will benefit from stress reducing design. given that, the preceding global principles and design implications should apply to all users. this second stage of the process encourages an in-depth evaluation of all intended users and their specific needs for unique and diverse spaces and opportunities. the scope of this project does not allow an in-depth evaluation of all user group needs. a general discussion of the various groups and possible specific design implications is outlined below. this is not intended to be inclusive but rather a means of idea generation for design. . . patients and visitors - diverse needs patient groups have been divided into primary categories that will facilitate visual, behavioural, functional and experiential programming and design: # . critical care. # . outpatient treatment/ diagnostics. # . outpatient teaching/follow-up. # . inpatients— medical/surgical. # . extreme ages. # . hospital long-stay. # . psychiatry/ mental health. family members and visitors are considered to be part of the "patient group" . this follows a strong belief that when a member of the family (immediate or extended) is ill, that the entire family experiences stress, fear, anxiety and grief. for example, a patient confined to an intensive care unit bed is highly dependent on caregivers. in many ways, the family member who sits vigil is equally if not more dependent on the hospital, its staff, and its design. a patient will sometimes, at a peak of stress, submit to the caregivers as a means of relieving stress and worry. family members must continue to cope and so require special attention. *note: the following discussion draws strongly from the author's experience/education as a registered nurse-certified emergency nurse (bedside, research, teaching, and management) in both urban/rural hospitals. it is also drawn from conversations with other caregivers (registered nurses, practical nurses and physicians) in the vancouver region. - - patient/family grouping # : critical care. examples: emergency, intensive care unit, coronary care unit, surgical units (o.r., post-anaesthetic recovery room, critical care recovery) discussion. this group experiences immediate and high stress and requires a high level of legibility, simplicity, and functional considerations. a high potential for boredom associated with long waits, however, mandates access to views, programs and outdoor space. a strong risk for sensory deprivation is present due to confinement to bed. length of hospital stay ranges from days to months, depending on illness/injury. prolonged stays generally include transfer to less acute area of hospital. design implications. . visitors/family members require strong consideration in design. for example: • entrances and exits should be clearly marked and circulation between services should be direct and simple. waiting areas (indoors or outdoors) should be within close proximity. • cafeterias should be in close proximity for easy access and quick retreat/refuge. • access to basic retail/commercial as well as comfortable overnight facilities should be available. • the -hour nature of critical illness demands design elements that promote a sense of safety, security, and understanding during day and night. pathways and outdoor spaces require lighting and simple wayfinding with attention to principles of cpted (refer to appendix ii) to allow visitors hour escape. . confinement to beds demands that windows be low enough to provide visual access outdoors, height, presence of positive distraction, regional cues to promote sense of place. . strong views to nature, animals, positive programming should be maximized, especially for patients suffering from stress-related illness (e.g. coronary artery disease). patient/family grouping # : outpatient treatment/ diagnostics. examples: radiology, day care surgery, outpatient cancer care clinic discussion. a fear of the unknown and potential for long waiting times creates a strong need for stress reduction. depending on the feared or actual diagnosis, a loss of control and feelings of helplessness and hopelessness may be significant. length of hospital stay ranges from hours to occasional overnight stay. design implications. . access to outdoor spaces should be close and easy. . strong visual positive distraction (views to nature/pets/play) are needed to combat helplessness/hopelessness. . physical access to positive distraction should be possible: e.g. nature (fragrant plantings, touchable plantings, bird/butterfly - - attracting plantings, access to outdoor walking routes), programming (commercial, cafeteria) . . providing options for easy refuge/escape and choices in movement/activity will combat loss of control. . potential for sensitivity to ultraviolet light (chemotherapy/radiation) demand shady garden spaces as an option. . potential for impaired skin integrity demands comfortable seating outdoors, sheltered from elements (sun/wind). . potential for impaired mobility (weakness or disability) demands frequent rest stops in open areas, handrails, and universal design, (see appendix i) . consideration of visitor and support person needs required (also subject to waiting/fear of unknown). patient/family grouping # : outpatient teaching/follow-up. examples: healthy heart, diabetes clinic, asthma clinic, chf monitoring, cva rehabilitation, health promotion programs discussion. teaching/learning and repeat visits are a strong component and therefore require special consideration in programming spaces. patients may move through the continuum of ability (in either direction) and therefore options and diversity are required. the length of hospital stay is generally less than one day, but may occur several times weekly, monthly, or yearly. it is also important to note that entrance into one of these programs often follows an acute stay in hospital (e.g. following new diagnosis of diabetes or recent myocardial infaction). design implications. . ensure presence of connections between acute care portion of hospital and outpatient programs to enable patients early introduction to follow-up. . provide connections between wellness programs for outpatients and specialized inpatient units in order to enhance follow-up and compliance with after-care treatment. this will also streamline movement by staff between the programs (e.g. cardiologists can visit acute patients in coronary care as well as patients returning for stress tests). examples of acute programs to connect with wellness programs are: healthy heart program—coronary care unit; physiotherapy programs—surgical units; diabetic teaching centre- medical units. . provide a welcoming community street face to reduce the stress inherent in attending a hospital site and increase accessibility/ awareness. . provide access to larger open space for independent exercise programs. . provide access to communal open space for programs with support staff (physiotherapists, occupational health, horticultural therapists, etc.). . consider avoidance of allergens in planting (e.g. avoidance of london plane-platanus x acerifolium) . . include programs suitable for hands-on interaction with nature (e.g. bird-feeding or watching, gardening, caretaking, fruit picking). - - . provide options for movement in the space to challenge persons during rehabilitation (e.g. wheelchair accessible paths to forest hiking trails to bicycle paths). . provide connections to community resources/amenities for field trips- programs (e.g. grocery stores for winter walking programs, local recreation facilities, schools). patient/family grouping # : inpatients— medical/surgical. examples: neurology, vascular, orthopedics, renal, maternity, infectious disease, respirology. discussion. patients in general medical-surgical wards encompass a tremendous variety of abilities, needs and ages. their length of hospital stay may range from one night to several months. design implications. . both mobile patients and those confined to bed share a need for physical and visual access to outdoors: rooftop/outdoor gardens should be easily accessible by wheelchairs and stretchers with consideration of window height and placement. . consider outside views in siting programs within the hospital. for example, the dialysis unit (with potential for long hook-up times) should offer a view that has interest, nature, and intrigue. views to areas with mystery in outdoor open space would be appreciated. . provide temporal changes in outdoor views: over days, seasons. for example, a program of bringing in rural pasture animals to "mow" open lawns would create special days of interest for patients confined to bed/hospital. . the increase in fear, frustration, anger, and boredom with prolonged hospital stays demands visual and physical access to distraction. . loss of control increases with prolonged stays, demanding the inclusion of options and choices of spaces: a sunny cafeteria space (indoor-outdoor) versus a shady, sheltered refuge. . younger inpatients may desire places to meet with friends where noise will not disturb other patients. . patients may desire places with "extent" for meeting with family, friends, volunteers, and pets. extent is described as a place away, a place to forget if only for a short time that current home is the hospital (kaplan, kaplan, and ryan ). a waterside picnic area under canopy trees, for example, with views oriented away from the hospital might be designed for family gatherings. . creative design of indoor spaces with strong connections to outdoor gardens might be designed for telephone nooks. cellular phones remain banned in the majority of hospitals, and so the "pay telephone nook" becomes a well-used place. patient/family grouping # : extreme ages. examples: paediatric population and geriatric population. discussion. a particular requirement for this grouping is the need for supervision and safety, combined with positive distraction. the length of hospital stay may range from day(s) to week(s) for paediatric patients. for geriatrics - - patients, it may range up to several months, while awaiting placement in an extended care facility. design implications. . supervision and safety are required. • outdoor programs should be accessible, defensible and in plain view of caretakers. . positive distraction through both design and programming is required to prevent sensory deprivation. • for geriatric patients that may be waiting for placement, the hospital becomes an interim home. this may be the population that suffers most from over designing hospitals for function and legibility. the absence of positive distraction and stimulation has disastrous effects on the fragile elderly population. a strong reliance on programming to provide stimulation (music therapy, pet therapy, horticultural therapy, and pastoral care) presents as a significant risk factor in an age of budgetary restraints and cutbacks. the role of the designer will be to aggressively design places that facilitate easy access to programs, e.g. by providing built raised garden beds and pathways accessible to wheelchairs and persons with impaired walking skills. designing access to outdoor spaces for persons confined to hospital beds will be an important challenge for the designer. . consider the creation of space that can be used by both geriatric and pediatric populations (separate and together). • an option may be to combine gardens/play areas for both groups of patients. placing these two groups in close proximity allows them to offer support, learning and positive distraction. play can be combined with rehabilitative efforts. for example, persons learning to walk again (e.g. following a cerebrovascular accident) or learning to use wheelchairs require a variety of surfaces and materials for "practice" (gravel, rubber, concrete, sand, turf, etc.) . these materials can be used to create a garden that is playful yet instructive for both sets of patients. patient/family grouping # : hospital long-stay. examples: palliative care/extended care. may also include a variety of medical conditions that require prolonged hospital stay for treatment (e.g. renal dialysis, complicated cardiac recoveries, etc.) discussion. the hospital environment becomes home to these users, who may seek a variety of programs for comfort. length of stay may be days to years. consideration of visitor and family member requirements will be vital. design implications. . these patients have a strong need for imageability and legibility in this hospital place that becomes "home". access to a diversity of programs will be beneficial. facilitating the spontaneous creation of place making (allowing for discovery) will also be important. for example, along with defined spaces, it will be important that patients have opportunities to find their own special corner, path, or tree on the hospital landscape. . opportunities for spiritual and emotional interactions between patients, staff, and community should be available: e.g. a multi- denominational chapel/area for prayer should be within easy access. - - . creating an environment that encourages community participation (volunteer groups and individuals) promotes social support. measures taken throughout the hospital site to encourage community involvement and volunteerism will benefit this group. patient/family grouping # : psychiatry/ mental health. discussion. a diverse group of varied ages and abilities, the psychiatric population will benefit highly from efforts at reducing stress. stress is, in most cases, a significant factor in mental illness. their length of hospital stay varies from days to weeks, depending on the type and severity of illness. length of stay will also be dependent on the type of psychiatric treatment programs offered by the proposed hospital. design implications. . provide strong natural views outside locked wards/quiet rooms. . avoid abstract art/forms in the landscape that might increase stress or fear. . provide well-defined, highly legible walking paths. . provide opportunities for privacy as well as social interaction. . provide legible wayfinding to private spaces, to public cafe/coffee shops, and to outdoor programs. . provide an outdoor space for patients to utilize that can be supervised by staff. . consider need for comforting, safe, outdoor area that can be supervised and is secure (e.g. "locked garden") for patients involuntarily admitted to hospital under mental health act. at the very least, these patients should have strong views to nature. . define a smoking area that is well lit for -hour use, defensible and provides a pleasing atmosphere. . define a smoking area that is visible by patients from within the ward. this will act to decrease stress if patients are made aware of the presence of a nearby smoking area. research focus: schizophrenia & smoking behaviour. some readers of this project may find it unusual that there is such specific emphasis being placed on the design of smoking areas. a brief review of available medical research, however, details the importance of enabling this behaviour for the psychiatric population, and, in particular, for schizophrenic patients. patients with schizophrenia have an extremely high prevalence of smoking. a us study found % of these patients were smokers compared with only % in the general population (hughes, et al, ). the increase in dopamine release induced by smoking has been hypothesized as being helpful in alleviating some of the positive schizophrenic symptoms (delusions, hallucinations, paranoia, etc.) therefore, schizophrenics smoke in an attempt to self medicate. smoking also interacts with neuroleptic treatment (a common drug treatment for schizophrenics, includes the drugs haloperidol and chlorpromazine). neuroleptic plasma levels are reduced causing higher doses to be prescribed and, subsequently, leading to higher incidence of side effects (goff, et al, ). one study actually showed that patients smoke more when treated with the neuroleptic haloperidol than during a medication-free state (mcevoy, et al, ). - - in summary, smoking cigarettes has proved beneficial in reducing both the ill effects of the disease and the powerful side effects of the drugs used to treat schizophrenic patients. yvonne savard, an emergency psychiatric clinician at langley memorial hospital (langley, b.c.) made the following statement in a conversation with the author (in may of ) : "the act of smoking helps them to filter out the negative thoughts that attack their minds and, in turn, they are much easier to deal with and much more open to treatment". most hospitals in the lower mainland of british columbia have very liberal smoking rules for their patients. areas provided for smoking, however, are generally windowless lounges or back door entrances. this project proposes to design a more hospitable open space for smoking. . . staff and volunteers staff and volunteers in hospitals require opportunities for stress reduction, for social gatherings, for education, and for meal and break taking. in particular, caregivers (nurses, physicians) require easy and immediate access to areas that offer brief respite. emergency staff, for example, in many larger cities across north america are victims of extreme stress several times during - hour shifts. these stressors include violence from patients and visitors, dealing with death and dying, exposure to infectious diseases, etc. in personal conversations, a large number of nurses claim regular physical/verbal abuse in the workplace. despite this, with staff shortages, breaks have become little more than stolen minutes outside the ambulance bay door. several studies across a variety of workplaces (e.g. healthcare, office buildings) have found that staff members have strong feelings about the presence of windows and available views. natural views are most preferred. studies conducted on caregivers in hospitals show that employees with views to nature experience less stress and report better health and higher levels of job satisfaction than comparable groups who lack such views (leather et al., ). the highest degrees of stress were found in environments with no windows at all (leather et al. , ) . for the economically conscious employer, improved health and higher satisfaction should translate into fewer sick days, injuries and leaves of absence as well as higher productivity (leather et al. , ) . an absence of windows is the current accepted status quo in a majority of emergency rooms in the lower mainland of british columbia. if windows are present, they are placed above head level and are screened with drapery/blinds (with the excuse of a need for privacy and security). illumination, night and day, is generally by harsh fluorescent overheads. natural lighting is rarely considered. many caregivers and patients will complain of a sense of disorientation to time due to the cocoon-like nature of the environment. consideration of hospital staff members as important users of the design creates several possibilities and responsibilities: . early involvement in design and planning of the built structure should include consideration of window placement and access to natural views for staff who are confined to working indoors for several hours at a time. - - figure - : prototypical windowless emergency wards. . physical access to the outdoors should be considered with possibilities for easy, quick access for short or long retreats. . the designer will need to pay special attention to the creation of spaces that promote a feeling of "being away" and of "extent" (kaplan, kaplan, and ryan ). lookouts with views to significant landmarks or large open space may be designed. . the designer should also pay special attention to the creation of quick refuge areas for staff only that are accessible and defensible hours a day. spaces should be designed that enable staff to be human and cry, swear, smoke or laugh away from the public-patient eye. . programmming for recreation before, during and after work should be included. for example, a defined running track on the hospital grounds may be used to relieve stress during longer breaks. . larger, open spaces to be utilized for teaching and social gatherings will be important as well. an unfortunate development in many hospitals is the gradual relegation of teaching rooms to basements and windowless rooms. indoor-outdoor relationships and views should be considered in early siting and programming. . security, safety, and functionality are important issues for staff working extended hours. easy and safe access from parking to hospital entrances is especially vital for evening and night staff. grouping parking together along a well-lit axis enables staff to walk together and facilitates monitoring of staff by security personnel. given the high numbers of staff who work extended hours, designs and programs for after dark become an important element. • administration: monday to friday, business hours • patient care and treatment (physicians/nursing): extended hours ( hours) • support services( security, cleaning, secretarial, medical records, laboratory, radiology, etc.): extended hours ( hours) - - • volunteers (both regular and ephemeral programs): extended hours . in the landscape design, facility maintenance staff/gardeners will also be important users. spaces should be designed for a range of maintenance requirements. . . community members welcoming the community at large onto the site will potentiate stewardship of land as well as social support. the visiting public will have specific needs for programs not usually considered on a hospital landscape. these programs will include (but not be limited to): . welcoming entrance: significant street face and high visibility; . accessible pathways not dominated by autos or ambulances that enable joggers, cyclists, pedestrians, dog walkers, and possibly equestrians to use the site; . open areas for community play; . public washrooms and public rest areas: coffee shop, cafe, retail; . gardening sheds for community programs; . meeting areas on site that encourage public users to stay versus simply pass through the landscape; . physical connections to larger community amenities (greenway corridors, trail systems, etc.) . conclusion. following a framework of restorative design should create a health care facility that people want to visit, during times of illness or wellness. it should be a place in which people feel comfortable; a place that is familiar; a place that is alive with food, water and plant and animal life; a place that people can and want to explore. at the same time, however, the health care landscape must respond to very specific needs of specialized users. it must be functional. it must be safe. it must be easy to use. the challenge will be to create a restorative landscape without compromising functionality. creating a place that allows harmony of nature and technology will be the goal of the design. an overall design that facilitates restoration should be applied to the hospital landscape with specific interventions applied whenever possible to meet the needs of specific populations. at the very least, the design should provide a framework for unique and specific places that may then be built as economics allow. for example, the design may program an open space to be shared by the extended care and the paedeatric wards. actual construction of this garden that combines rehabilitation with play may require future fundraising by the community and the hospital in order to become a reality. providing the space and the infrastructure for this and other gardens or open spaces increases the likelihood that they will be constructed. - - applied restorative design: a tiered approach t a g e # : application of universal principles to entire project " enhance existing conditions and/or create new situations that satisfy human needs tor restoration (stress design for: archetypal legible living j accessible goal: a holistic restorative landscape t stage # : recognition of specific user requirements ipottm ••-.••:; to meets"" \ patient/family groups goal: to recognize the specific needs of various patient/family groupings and design a "groundwork" for individual spaces that can evolve overtime. specialized groups include, but are not limited to: . critical care . o u t p a t i e n t t r e a t m e n t / diagnostics . outpatient follow-up . inpatients-medical/surgical desi gn for: staff and volunteers goal: to not only recognize but actually design for stress reduction among caregivers. special attention must be paid to the -hour nature of employment in health care facilities and subsequent needs for safety and security. community members goal: to increase use and s t e w a r d s h i p o f landscape, as well as facilitating a greater m o v e t o w a r d s v o l u n t e e r i s m a n d a l t r u i s m w i t h i n the hospital environs. i i goal: a holistic restorative landscape that responds to all figure - : approach to applied restorative design (hospital landscape) • chapter v. public process: a discussion . the planning phase. "any attempt to create a new approach to public land or building design will fail miserably if the public is not consulted and does not have a sense of ownership, stewardship, or claim in the project." (sommer, , p. ) it is accepted that the scope of this project does not permit the public input that would be required for the successful design of a community facility. planning for a hospital landscape would require full and active participation from a wide cross section of the population. actual interest groups involved in the process would require specific research for each individual site. interest groups that would be called on to assist planners and designers would ideally include (but not be limited to): • government officials (municipal, provincial and federal), • health care (physicians and nursing), • local business associations, • representatives from different levels of local schools (university, secondary and elementary), • wildlife and environment stewardship groups, • churches and volunteer groups, and • various recreation interest groups. the accepted form of decision making in a democratic world is voting. all citizens would have say in where and how a health care facility is constructed. the demanding and complicated procedure that precedes a vote, however, is that of goal setting (steiner, , p. ) . "goal formulation requires public participation" (wright, braithwaite, and forster, ). a major challenge in involving public interests in the decision-making process is to ensure that decisions and goal setting are based on accurate and complete data. the public may concede to the tried and true only for lack of a better approach. how does one ensure that the public not only has a voice in the hospital design, but is also made aware of the expanding and specialized body of research that directs restorative design? if community members are made aware of the advantages of designing for familiarity, compatibility, biodiversity and accessibility, it may be assumed that heightened pressure will be put on public representatives to change current traditions of construction and, more importantly, of resource allocation. an initial exposure to the restorative design approach may feature the use of preference testing of key potential users. this would involve showing visualizations of regional and archetypal landscapes to users in order to determine preference (and to build justification) for the ensuing design. - - designers may well propose restorative landscape manipulation, but without public support, designs are easily slashed to a mere remnant of their original intention as a means of saving dollars. an adaptation of a model put forth by ray mcnair in and elaborated by frederick steiner in is proposed here as a means of ensuring early and continued involvement by community interests. this model demands and facilitates an interactive process between planners, designers and the public. a g e n c y r e p r e s e n t a t i v e s landscape architects, planners, architects, health care consultants c i t i z e n o r g a n i z i n g core interest groups (e.g. recreation, volunteers. wildlife protection, seniors-schools-ch urches) setting objectives p h a s e i preliminaries: objectives, agendas, concerns organize core groups j gathering data t p h a s e ii elaboration j selecting core representatives identifying alternative plans i t prepare/organize for long term involvement setting priorities i i p h a s e i i i action negotiating citizen ideas and proposals i design of technical program proposals i task force formation for j long term considerations reformulating proposals negotiating detailed recommendations final n e g o t i a t e d d e c i s i o n s public process model (adapted from: macnair, ) continued involvement: interaction with regional health board to ensure long term goal attainment figure - : model for public involvement the model suggests moving the public process away from the traditional open public forum, often criticised as being ineffectual and a nuisance (steiner, ) . rather, key personnel with both project and community interests are brought together in an atmosphere that encourages sharing of ideas, goal setting and decision-making. - - . site-specific programs. in times of financial constraint, it is unrealistic to expect health care budgets to be allocated in a large way on landscape upkeep. however, it may be possible to attract and encourage organized community groups that are now present in most cities, large and small. locally and regionally directed volunteer/interest groups exist as powerful potential resources. examples drawn from the city of abbotsford, b.c. (locally and regionally) may include, but certainly not be limited to: • central fraser valley naturalist society, • local -h clubs, • monika's wildlife shelter & friends, • local groups/individuals with interest in the areas of heritage tree protection, native planting promotion, habitat protection, etc., • city of abbotsford "adopt-a-street", • city of abbotsford "adopt-a-park", • neighborhood block watch, • british columbia senior's peer network, • alzheimer's society of b.c. field support staff and volunteers, • abbotsford hospice society, • abbotsford big brothers-big sisters, • ducks unlimited canada-local chapter, • langley environmental partner's society, • abbotsford peer support for senior's. involving the local community groups in an early phase of planning will increase the chance of designing a site that will be the subject of active and concerned stewardship. this design proposal will include exploration into the development of a local community group that will take a specific interest in the care and maintenance of the hospital landscape. as has been stated, the idea of creating hospital open space that promotes community use and care as a means of advancing volunteerism and altruism is an important goal of this exploration. figure - : volunteers monitoring habitat in constructed stream-marsh. - - chapter vi. marshall road location: existing conditions . history of existing project. on march , , the provincial government gave approval to construct a new regional hospital in the fraser valley of british columbia. a - bed acute care hospital will be combined with a new regional cancer centre to serve residents of the eastern fraser valley. the proposed site for the complex is a . ha parcel of land on marshall road in abbotsford owned by the fraser valley regional health district. the intention of this new facility is not only to relieve pressure on tertiary care centres in vancouver, but, more importantly to allow local residents to receive improved health care closer to their homes. the new hospital will replace an aging facility that no longer meets the needs of the community. "together, 'this new facility' will provide a phenomenal improvement in health care and new services not now available in the region. health authorities and providers need to be able to plan and deliver services for patients within their own region." (bc cancer society, ) on december , , the provincial government announced a restructuring of the province's health care system. the fraser valley health region was merged with two other health regions (simon fraser health region and south fraser health region) to become the larger fraser health authority. the impact this project timeline. : : , june: , sept.: , oct. : : source: • options explored for upgrade to local health services. • construction of new facility recommended. • marshall road property purchased by fraser valley regional hospital district (fvrhd). site previously used as provincial veterinary laboratory (and chicken experimentation site). • working drawings completed; project placed on hold by provincial government. • b.c. ministry of health requests review of project; addition of cancer agency to acute care hospital plan. • ministry advances funds (fvrhd agrees to % share capital costs). • hazardous material removal and demolition contracts awarded, (private versus public). • expected date of new working drawings. • expected date of project completion at estimated cost of $ - million. fvhr project home page, . http://www.hsg.bc.ca/projects/fvhc/ • - http://www.hsg.bc.ca/projects/fvhc/ accessible landscape: automobile focused. primary road access to abbotsford is provided by the trans-canada highway (# ) running west to vancouver and east to hope. built in the s, the highway allows for easy and rapid access to surrounding communities. highway provides the north- south link to mission ( km) and the u.s. border ( km) at sumas, washington. freight rail service is provided by cp rail, cn, and southern railway of b.c. the local airport provides daily flights to national locales. despite proximity to major highways, it is significant that % of the working population are employed either in or directly adjacent to the city of abbotsford(city of abbotsford, ). proximity to the trans-canada highway and easy access to surrounding regions will be significant in defining the hospital's catchment area and in allowing it to serve as a major trauma centre for highway related accidents. bicycles cfe on the bus thanks to the following organizations which have provided bus- mounted bike racks for the central fraser valley transit system: • fraternal order of eagles • seven oaks mall • university college of the fraser valley • wenting bicycles despite accessibility to and through the area by major highways, transit service is limited. hospital users will have high automobile dependence. this will impact on the amount and type of parking that will be required for the hospital design. many suburban and rural areas are not serviced by buses, although there is a local increase in park-and-ride facilities as well as bus- mounted bike racks. a local bus route (# -north poplar) currently passes by the hospital site, with hourly stops during business hours. an extension of hours and increased number of buses will be required for the hospital. origins. following word of the fraser river gold rush, thousands of non-british citizens swept into the territory. in order to assert their claim on british columbia, the british government sent the royal engineers to survey the area in . figure . : downtown . photo courtesy m.s.a. museum. as reward for their services, the engineers were offered land at minimal prices. in ,canadian pacific railway built a line from mission to sumas, washington intersecting the only roadway through the valley, the old yale road. a station setup at this point would become the village of abbotsford. it was incorporated in and became a city in with the amalgamation of the districts of abbotsford and matsqui. figure - : downtown . photo courtesy m.s.a. museum. . analysis: regional context figure - : relationships to local municipalities. the city of abbotsford is located in the centre of the fraser valley of british columbia, approximately km from downtown vancouver to the west and hope to the east. with a population of , ( canada census), it is the fifth largest municipality in b.c. abbotsford covers square km ( square miles), about % of which is part of the agricultural land reserve and is some of the most productive farmland in canada. the majority of residents live in the urban core, surrounded by farmlands and rural communities. abbotsford is viewed as a true "city in the country" for this reason. "abbotsford has continued to urbanize without sacrificing its rural roots."abbotsford chamber of commerce, . - - above-figure - : farms", abbotsford. below-figure - : abbotsford. "manzana apple winter raspberry canes, edible landscapes. the edible landscape is highly recognized and cherished in this region. the urban core of abbotsford is approximately km ( miles) from the pacific ocean in white rock and about the same distance to mountainous sites. the combination of sunshine and precipitation has resulted in an evergreen valley. enjoying one of canada's mildest climates, with a long frost-free season, mild winters and warm summers, abbotsford has good, fertile soil conditions. these conditions have resulted in the area becoming the "berry capital" of b.c., with edible landscapes spread across the valley floor. in , million kilograms of raspberries, % of the total grown in b.c., came from abbotsford and directly brought $ . million to the economy. in the same year, . million kilograms of blueberries generated $ . million. scattered throughout the region are also producers of saskatoon berries, red currants, gooseberries and blackberries. grass and corn are grown in large tracts, primarily to service the livestock (dairy cattle, equestrian) industry (city of abbotsford, ). co to <b +j sn o o o o a o w u o cd o o co urban-rural harmony, rural activities continue to be a significant part of the abbotsford economy despite a growing diversity of businesses: food processing, aerospace, manufacturing, finance and retail. farm receipts total more than $ million annually (city of abbotsford, ). figure - : baling hay in abbotsford, . significant views. mountain views are an integral part of wayfinding and legibility in this valley landscape. major peaks include golden ears, mount baker, and sumas mountain. a significant visual landmark is mount baker to the southeast, visible on clear days . large expanses of farmland are situated within minutes from the urban core. these open spaces are generally closed to public use but exist as significant visual resources. c * , ! * • j f c j * * w cu o 'h o in w -u o -"; o u o -m u city of abbotsford population by age group - to h • • figure - : population by age growing, diverse community. the census figures just released in march of indicate a . % increase in population for abbotsford since . this is in contrast with . % for the entire province. despite a national trend towards aging communities, the census for abbotsford revealed a minor drop in the percentage of population over and an increase in the under group. the implication for abbotsford is that the city will have to continue providing services and facilities to service a family oriented community (city of abbotsford home page, ) . figure - : cultural diversity figure - : farm near sumas highway exit. .. in o - o -h city of abbotsford ethnic ukrainian % j irish % a dutch % mi german % [ other % % ^ indo-canadian sojifs: su^sgcs canada "^ ^~-~ % ^r composition - ^ ^ _ multiple origins ^ ^ % \ j f canadian i i i m ^ | p ^ % british % - - l o o k i n g n o r t h o v e r a b b o t s f o r d c i t y : r u r a l - u r b a n harmony. t r a n s - c a n a d a highway v i s i b l e i n f o r e g r o u n d r u n n i n g e a s t t o w e s t . ' the l a r g e g r e e n open s p a c e j u s t n o r t h of t h e trans-canada ( o u t l i n e d i n dashed l i n e ) i s t h e p l a n n e d h o s p i t a l s i t e . m i l l lake, a s i g n i f i c a n t d e s t i n a t i o n s i t e for a c t i v e and p a s s i v e r e c r e a t i o n i s s i t u a t e d i n t h e middle ground. dotted l i n e s w i t h arrows show p o t e n t i a l c o n n e c t i o n r o u t e s from t h e h o s p i t a l s i t e . figure - : aerial view over proposed site, . (source: fraser valley web site, available at url http://www.seethefraservalley.com/abbots/abbots.htm) r e g i o n a l c o n t e x t : summary. s t r e n g t h s . . population "home-based": residents work and play close to home. . tradition of harmony between urban and rural interests. . diverse population in terms of culture, age, and socioeconomic status. . tradition of community involvement in local projects: examples are "adopt-a-street" and "adopt-a-park" . to to . proximity highway and centres. . significant open space views trans-canada surrounding and spectacular mt. baker, sumas mountain, agricultural fields. weaknesses. . significant rural areas in region with inadequate transit service: high automobile dependence. . sprawling layout of parks and recreation facilities in area: competition for users. . growing population: potential for urban-rural conflict and degradation of exiting open spaces. - - http://www.seethefraservalley.com/abbots/abbots.htm fai-d*tsflity himisi&g (toward • | j b » i t i l . y s f e l fkaik; y f i * e « hospital s i t e mill lake recreation h primrose ave opportunity figure - : immediate site context, / good neighbors . building height and mass will need to be minimized in order to fit in with the neighborhood character (maximum storey). consideration of the neighboring seniors' facilities in programming (visually and physically) will allow the hospital design to be more inclusive and serve the greater community. trans-canada noise barrier. highway as the proximity of the trans- canada highway will be advantageous in terms of wayfinding to and from the hospital, as well as simply lives saved by quicker access to highway traumas. for on-site users of the hospital space, however, measures to decrease the noise effects of the highway will be necessary. some degree of noise protection is currently in place due to an elevation in grade along the western edge and a constructed metre berm along the eastern edge of the site. noise calculations will be required during siting and design of the buildings and open space. recreational connections. a small park (highland park) is located across gladwin to the west of the site. this area currently has children's play facilities. a more significant recreation site exists two blocks north of the site at mill lake. mill lake is a major local destination point for recreational activities that range from jogging and cycling to more passive bird watching. just west of the lake is a large indoor and outdoor recreational site (centennial park) accessed from the hospital site down gladwin road. accessible views. given the presence of the protective berm between the site and the highway, the potential for creating significant interior viewsheds is great. as well, the site is privy to significant off-site views that will be particularly vital to users of the higher hospital floors. maintaining views to the rural, pastoral land south of the highway will be important. the value of this view as a restorative opportunity may well influence future zoning decisions. at present, this land is under alr (agricultural lad reserve) and is protected. as mentioned previously, views to mount baker (directly southeast of site) are highly treasured by local residents. currently, the elevation of the central knoll allows a good view to this landmark even without the benefit of building height. figure - : highland park to east of site. figure - : menno home and hospital to north of site. figure - : low-rise residential surrounds site. . analysis: site context. the proposed hospital site is situated in abbotsford, british columbia directly adjacent the trans-canada highway on a . hectare ( acre) tract of land. it is surrounded by single family, low-rise residential and low-rise (maximum storey) senior citizen care facilities. to the south are large expanses of rural farmland and to the north, the urban core of abbotsford. access to the site may be gained from either clearbrook or maccallum highway exits ( minutes driving east and west from the site). significant factors to be considered: . . potential for recreational connections(highland park, centennial park, and mill lake, in particular). . . proximity of trans-canada highway and need for protection. . . potential for significant viewsheds off-site (mount baker as most significant). . . the senior connection: neighbors as important resources. figure - : trans-canada (# ) highway to south of site. p % * i -- ' tijutswiui) l*=*:*vttf; §: ii l k*otie» •• - h s h t w t j sign* ;s i*p % ' j | : j " swkvaave • w ^ * * *«? * v hfchway # ~ i i 'j, •> f fcl=sj*j!alt * . % m i l l l a k e i , i wl .: « v * * " | kvw »'.! * -h fjwi u > « '•"•' .- site | j : ; | ^mam^m* - _] £ edh.vkbe — •«»(«!«*fcrf" ~|jsmmw«pl g g u h f s o * * * cg ,•• i ? valley ip^' kwm . « a l t h a > " ^ ^ m * j aw a": js % s rf - ' swamps mtgshfti. "•;»!•: ftp wujmtos *'" hawwcsw ;•••• n ' * "s wait! f j f kb.. : ^ . | umfr moin ~*s.j*sh | j - m s . n £ te^jii : a 'gn # • figure - : street context - - - figure - : visualization sketch of primrose avenue amendments. sidewalks, street trees, lighting, benches, decorative paving and signage are all possible interventions. the images to follow display existing conditions. figure - : marshall road looking east. figure - : primrose avenue looking north to mill lake viewing point. consideration of street conditions. access to and from the site (to mill lake primrose connection or elsewhere) will require movement along the sloping marshall road that borders the north edge of the site (as pictured on top left) . this roadway will be the front door for the hospital site and considerations for street treatment will be necessary. existing conditions are rural (mature douglas fir and unmanaged underbrush). there are existing . metre sidewalks that would require widening for dual wheelchair access. managing the steep grade of this road will also be a consideration. maintaining a rurally appropriate street edge while at the same time acknowledging the urban nature of a regional hospital will be required. primrose avenue (shown at bottom left) is the current main access from the site to mill lake. this flat route is two rural blocks along low- rise residential housing. the street is poorly maintained at present and has no street trees or sidewalks. users en route to the mill lake view point generally travel down the center of the road. ikjp^raj w$ &^ &s&& u s u «—f w •>»!., ^"iflujlhi^ . . context focus lake access mill figure - : mill lake viewpoint. this constructed viewpoint at the end of primrose avenue overlooks the southern edge of mill lake and connects to a recreational trail that encircles the lake. figure - : mill lake trail. several opportunities to link this trail to hospital programs exist. for example, a staff running route that moves through the hospital and connects to mill lake could be used for after work stress reduction. much of this trail is paved and/or gravel and is of a flat grade, facilitating wheelchair use. issues of lighting would need to be addressed (safety and security) . figure - : mill lake. this is a significant local resource for both passive and active recreation. local bird habitat include mallard and wood ducks, canada geese, hooded mergansers, and great blue heron. a viewpoint for mill lake has been constructed at the end of primrose avenue, a residential street on the eastern portion of the site. this route is well-used by residents of the seniors's facilities to access a trail that surrounds mill lake. a more sloping route to the lake is available down gladwin (western portion of the site) . opportunities: x enhance primrose walkway (create a " w e l l n e s s walkway") for community members and hospital users. x create a loop connection through the hospital site that connects with the mill lake walking and cycling trail. x utilize mill lake as an off- site yet a c c e s s i b l e restorative water feature for hospital site through connections. x enhance habitat movement by creating a more cohesive green connection to open spaces through use of street trees. - - metres noise measured . m above road surface highways figure - : sound protection assessment. sound berm enhancement ' metre addition naturalistic, native tree planting of trees &? m mir t o o ku>y «-i figure - : sound berm construction. c u t a n d f i l l : r o u g h c a l c u l a t i o n s . calculations are conceptual only to show potential for berm creation. • f i l l r e q u i r e d : m(l) x m(w) x m (d) = , m (volume) • p o t e n t i a l f i l l from u n d e r g r o u n d p a r k i n g c o n s t r u c t i o n = , m • p o t e n t i a l f i l l from s t o r m w a t e r p o n d / m a r s h c o n s t r u c t i o n ( r e q u i r e d b y c i t y of a b b o t s f o r d ) •= m x m x m = , m **resulting excess fill can be marketed to provide funds for project. figure - : proposal for "trans-canada green". figure — : current south e a s t e r n berm (as viewed from marshall road) . sound buffering. the existing metre high berm along the southeastern portion of the site has been examined for ability to provide sound protection for a high storey hospital building. this will be especially important for those patients who require long term hospital stays. constant noise from daily rush hour traffic will be prohibitive to restoration. calculations show that an increase of metres will provide noise protection to a height of metres (approximately - storeys), if the built form is set metres from highway. this enhanced berm should be planted with a mixture of dense mixed trees to enhance the sense of enclosure for the hospital open space. this is in keeping with the concept of volumetric space and creating archetypal spaces in which people feel most comfortable (condon, ). a proposal is made to create a berm surface that can have future potential as a recreational trail, including equestrian use (minimum metre shelf). a continuous green corridor currently runs along private and public property (industry and farms). developing a suitable berm trail on the hospital site could facilitate future efforts to expand this link (see figure - ) . interim protection will require a high fence between the highway and the berm. the fence will be planted with fast growing shrubs and vines, thereby creating an important hedgerow link for habitat. . . context focus: trans-canada highway figure - : view of trans-canada highway along southern edge of site. this major commuter way presents visual, auditory, and physical barriers to the proposed hospital site. the proximity of the trans- canada highway will be advantageous in terms of wayfinding to and from the hospital, as well as simply lives saved by quicker access to highway traumas. for on-site users of the hospital space, measures to decrease the noise, if not the visual effects of the highway will be necessary. existing protective conditions include a six-foot high chain link fence, a metre berm and a lining of mature douglas fir trees. noise analysis was done in order to determine optimal conditions for building siting, building height, and enhancement of berm (if required). this data is included here. figure - : existing site berm as viewed from highway. - - p e r s o n figure - : general viewshed mapping to mount baker visual landmark. s a f e t y i n t h e - h o u r e n v i r o n m e n t . figure - : mount baker-a regionally cherished (and well-photographed) visual landmark. . . context focus: seniors as neighbours the presence of two large senior's facilities (mayfair and menno) adjacent to the site present as a strong opportunity. programming and development of access routes should include these users. the potential for senior's with cognitive disorders (alzheimer's, dementia, etc.)using this site also heightens the demand for safety and security. pathways will need to be clear with simple wayfinding and measures to protect against accidents will be required in the design. special opportunities present in terms of cafes, restaurants (cafeteria) and meeting /greeting places. the use of open space for activities that can be shared by seniors's of all abilities will be important in the design. this will be an important issue not only as a result of staff working all hours, but also due to the potential for high use by seniors with potential for cognitive impairment. safety will be maximized with lighting and easy way finding from buildings to parking lots, main streets (bus connections) and evening garden/restreat spaces. principles of crime prevention through environmental design (cpted) will be followed whenever possible (see appendix ii) . examples will include: • visible plantings/details/furniture that require a minimum of upkeep; • spaces intended for use by the public versus those restricted to hospital patients/staff clearly identified with real or symbolic boundaries; • entrances and exits clearly marked with sidewalks and lighting; • safety features used in areas of potential danger to persons with impaired cognitive abilities (e.g. around water bodies, roadways); • visual access around and through buildings maximized to discourage intruders and improve wayfinding; • landscaping in sensitive areas (high use after dusk) adheres to "groundcover-canopy strategy" with shrubs below eye level. eye level is considered from a wheelchair position. . . context focus: accessible regional views for many users of the hospital, confinement to the building will be an issue (staff, patients, and visitors). given the presence of the protective berm between the site and the highway, the potential for creating interior restorative viewsheds is great. the presence of surrounding viewing potentials is particularly important for users of upper hospital floors. views to the rural, pastoral land across the highway to the south will be important. maintaining the integrity of this view may influence future zoning decisions. at present, this land is under alr (agricultural lad reserve) and is marginally protected. as mentioned previously, views to mount baker (directly southeast of site) are highly treasured by local residents. the existing elevation of the central portion of the site enables a good view to this landmark even without the benefit of building height. the map pictured on this page shows the southeast location of mount baker in relation to the site. given the flat river valley land in between the site and this landmark, extensive viewshed mapping was not required, however, orientation of views will be a major consideration in the design. these measures to promote safety and security (both real and existential) will advantageous not only to surrounding seniors but to staff, patients and families as well. be mount baker presents as a picturesque landmark even in the presence of foreground industry (in this case, one of several car junkyards in the area). - - figure - : ortho map of . hectare proposed hospital site, -prior to building demolition (courtesy of city of abbotsford) . . on-site conditions . . methodology. given the restrictions on access to the site (high perimeter fencing, demolition activity in progress), analysis was challenging and assumptions had to be made. methods used included: • use of aerial photography (supplied by city of abbotsford as well as private sources) , • use of contour information obtained from city of abbotsford, • use of data gathered by initial site analysis and planning team, resource planning group (located at fvrh project home page), • limited ground-truthing, using photography from all available viewpoints, • few ventures onto the site after hours, • discussions with local r e s i d e n t s r e g a r d i n g conditions of soil, water drainage and general conditions, • research conditions area, • personal knowledge of the area and its conditions. the site was observed over the span of several months: october through march. this enabled a fuller interpretation of denseness of vegetation through the seasons as well as a cursory evaluation of the effect of the british columbia rainy season on the site landscape. a generalized analysis of on-site conditions is presented here as well as a summary of opportunities based on the restorative design literature. into regional affecting this graphic scale (metres) • - :^ni^anad]riw^r » • • - ' ' - la/»e figure - : analysis map- summary of site conditions, . [ft ••'.'. ' i i graphic scaj graphic scale (metres) significant viewsheds • exterior: mt. baker is visible to southeast from upper knoll; rural agricultural fields are visible across the highway to the south. • interior: a current potential exists for interior woodland views in the douglas fir knoll and open pastoral views behind the highway berm. topography. • two flat plateaus surround a man-made treed knoll in centre of site: peak of knoll at metre above seal level, lowland at metre above sea level. this suggests a significant challenge for grading the site to accommodate univeral accessibility. vegetation • primarily douglas fir, second growth ( - metres in height) is identified at edges of property and at apex of treed k n o l l . d e c i d u o u s cottonwood, alder, scrub, decaying/damaged coniferous trees and unmanaged rubus d i s c o l o r ( h i m a l a y a n blackberry) are on slopes of the knoll. views and access into the knoll highly limited by scrub and rubus discolor. small pockets of abandoned, cultivated orchard species noted on northeastern and southwestern portions of site (e.g. hazelnut) . conifer woodland douglas fir, some cedar/hemlock deciduous/mixed (alder/cott onwood/ cedar) and scrub various exotic conifers, varied heights poplar x planted \ old field area {phazelnut) i visible rubus discolor < % s l o p e s - % s l o p e - % s l o p e s > % s l o p e s . . s u m m a r y c o n d i t i o n s o f o n - s i t e figure - : analysis map- vegetation analysis, - . figure - : analysis map- topography analysis, . soils. • this area is characterized by sandy, loamy soil that is generally well draining. water/drainage no significant water bodies are noted on the site. current drainage is either subsurface or directed into ditches at edge of trans-canada hwy (along south end of site). wildlife • h a b i t a t f o r s m a l l mammals(evidence of voles) and raptors is noted in the open pastures. no significant bird or animal life was noted in the largely coniferous knoll. no obvious signs of larger habitat (deer, coyote)were seen although these animals have been spotted in nearby open spaces and are prevented access to the site by current protective fencing. human trace • traces from old roads and chicken barns are evident due to very recent demolition. there are no remaining built forms. elements (climate, wind) • significant winds in this area are from southeast in winter. noise noise from highway is audible throughout the site and is greater at peak travel times and on rainy days. - - connect to recreation connect t o recreation "all existing mature douglas fir stands present as strong cues to regional identity. this includes the central knoll as well as perimeter stands. figure - : analysis map- summary of restorative opportunities on-site conditions : restorative opportunities . this graphic overlay explores the opportunities and constraints of the existing site conditions relative to the principles outlined in chapter iv. an attempt is made to identify areas that may be enhanced and/or protected in order to achieve a landscape that is archetypal, compatible, living, and accessible. a 'critical area map' follows on page xx that highlights very specific elements that will help direct the site layout and the eventual design and programming of the hospital. in the following chapter, the final scheme is analyzed from all the various viewpoints, using these analysis maps to guide decisions for protection and/or enhancement of landscape areas. both functional and restorative 'requirements' were used to guide this final design. . opportunities & constraints: archetypal landscape. two primary areas are identified as potentials for an open pastoral experience, the upper west corner and the south to south-east portion of the site. currently very flat areas, these will also serve as prime locations for constructing the built form. given that enhancement (an increase in height and planting mass) is required along the southern berm, the southern pasture may prove to be the most appropriate place to protect and enhance the wide-open feel of a pasture. in contrast, the southwestern corner of the site is situated on an elevated plateau and does not require a berm. subsequently, this area may prove the sunniest space for gardening activities to occur. - - the central treed knoll is considered worthy of protection for several reasons already discussed (habitat enhancement, areas for prospect-refuge, regionalism, aesthetics, and wayfinding). a challenge will be to salvage this site without allowing the built form (hospital buildings and parking lots) to demolish these mature, highly recognizable trees. figure - : central treed knoll on proposed hospital site, november . a small park to the west of the site also offers views to an open space preferred by humans and may be included in the open space program, particularly for viewing opportunities if buildings and windows are oriented in that direction. the grade change along the site may facilitate the construction of a water body (lake and/or marsh) in which users will find comfort. the importance of water in the restorative landscape has been discussed in previous chapters. . opportunities & constraints: compatible landscape. protecting and enhancing current views to regional landmarks (alr land, surrounding peaks) will enhance the sense of belonging. ensuring that these views are kept open and not made inaccessible by inappropriate built program placement will be important. another issue to be considered is the creation of a welcoming, legible front entrance. the currently well-used corner of gladwin and marshall (with an existing bus stop)presents as an opportunity. use of this corner as the main entrance would allow the large space on the eastern portion of the site to be developed for open space programs accessible not only by the hospital but also - - douglas fir that currently border the site are retained, it will be important to ensure a maintenance plan that ensures the balance between mystery and legibility are not disrupted. currently, these stands do not exist as impenetrable barriers. . opportunities & constraints: living landscape. a review of current habitat types and potential habitat types will enable the designer to attract birds and small mammals in a natural manner. by enhancing and protecting those areas already suitable for different types of birds and mammals, the site will have a higher likelihood of filling with life and signs of life. the rough overlay shown here in figure - identifies existing landscape types that may be protected (open pasture, treed knoll, old fields, etc.). this does not rule out, however, the active design and creation of new habitat areas that will more aggressively attract birds and animals. in particular, bringing water features (large and small) onto this site will be advantageous to a large number of species. the proposed final plan for the design will attempt to protect and/or create as many 'natural habitats' as possible. for example, retention of the inner forest knoll will provide habitat for raptors (feeding) and, if supplemented with appropriate edge plantings and a tiered understory structure will enhance the interior bird and wildlife population. another example may be the retention of existing open pasture as a means of introducing domesticated animals onto the site, for permanent or temporal use (sheep, cows, horses, etc.) . - - this issue of habitats for biodiversity will be explored further in the following chapter. the other element of the living landscape is humans working, playing and exploring in the physical open space. sunny southern exposures lead to opportunities for community and/or hospital-based gardens, walkways and other outdoor programs. as identified, the sloping, southern portion of the site presents as a viable place for these activities to occur. a danger will be the construction of a large built program that may block sunlight. living landscape focus: potential for rural-edible landscaping. as discussed in previous chapters, patients (and staff and visitors) will feel more comfortable (and encounter less stress) if surrounded by regionally familiar programs or plantings. an edible landscape on the hospital site will not only give evidence of life (the living landscape) but will also be a familiar and regional site, easily understood by local residents. the sunny, southern exposure of much of the site and the good groundwater drainage would indicate a potential to grow and harvest regional crops such as raspberries, blueberries, strawberries, corn, grass for hay, etc. creating an edible landscape on the site will have the added benefit of providing important habitat for certain types of birds and wildlife. introducing community gardens or orchards onto the site will also increase the possibilities for community interaction on the hospital grounds. on a purely aesthetic level, edible landscapes (in particular blueberry and raspberry fields) create all-season interest and provide an appealing local alternative to mass plantings of exotic shrubs. living landscape focus: potential for greenway connections. habitat loss and fragmentation are the most serious threats facing populations of birds across north america and around the world (audubon society, ) . for several years, residents of the fraser valley have participated in what is - - figure - : red-tailed hawk. figure - : townsend warbler. figure - : stellar jay. participated in what is becoming the large "business" of "back-yard" care of small birds. a multitude of specialty stores in the area offers seed, feeders and apparatus. each december the central valley naturalists co-ordinate the 'audubon christmas bird count' for the abbotsford/mission area. this is in participation with birding groups across canada, the united states, central and south america, the caribbean, and several pacific islands where north american breeding birds spend their winters. of the bird species counted in this region last year, it is important to note that were observed in gardens, including rare sightings of townsend's warblers. this indicates a high degree of participation by local residents (abbotsford-mission times online, ) . "north america 's birds are in trouble. through stressing action by people at the local, grassroots level, ordinary citizens are given an opportunity to protect globally important places and help save the birds that use them from decline and extinction (audubon society, )." the enclosed nature of the site (sandwiched between highway and urban core) inhibits the potential to join hospital open space with surrounding terrain-based habitat corridors. one potential and vital greenway connection, however, is the now- existing continuous green that follows the length of the trans- canada highway. this includes not only the center meridian but also the edges. this exists as a potential resource for both habitat enhancement and recreational purposes. - - figure - : views from the highway: potential private-public green corridor. . opportunities & constraints: accessible landscape. graded relatively flat on either side of the treed knoll, a marshall street entrance to the hospital site will be easily accessible by a range of users. a unique challenge will be creating an accessible open space in the protected berm area that deals with a -metre+ drop from apex to base. paths that allow neighbors of all physical abilities (those with impaired mobility to those seeking a recreation challenge) to access and enjoy the site programs will require a creative approach to both grading and pathway design. a legible, strong entrance will be required for persons arriving under great stress. ambulance arrivals will require a separate entrance that is not closed off to the public but that will be a secondary route at best. gladwin road presents as a possibility for this access. fire and other emergency vehicles will require a -metre minimum clearance around all built structures as well as access into the open space program areas. this may limit the choice of materials, as these pathways should be fully accessible during all seasons. satisfying the functional aspect of accessibility will need to be balanced with restorative requirements for a welcoming entrance and a promise of discovery beyond (a sense of mystery). this may require a separate entrance for recreation and community members that does not interfere with the urgent functional arrivals related to hospital programs. - - respond to existing topography and utilize to create open space and sense of enclosure: • use central elevated knoll (prospect position) to create viewing opportunities to surrounding peaks and farmland; • use flat pastures and low plateaus to create accessible open space program areas, large water feature (s) and a sense of the open savannah for viewers; • enhance existing berm to heighten sense of enclosure and to protect from highway noise; • grade site in a manner that enables a wide range of users to move throughout the site easily. maintain as many existing mature trees and/or landscape units as possible: • retain as much of mature, second-growth douglas fir in central knoll as possible and create programs that will allow the trees to be used as a physical as well as visual resource (trails, areas of refuge); • retain mature, second-growth douglas fir along east border of site in order to maintain sense of mystery that currently exists between hospital site and neighboring senior's facility; • retain as many ornamental and native mature trees within site, and intersperse with newly developed plantings and programs; • retain areas of old field/old orchard, recognizing their importance to local habitat (e.g. in particular, old field in southeast corner of site, and old hazelnut orchard in northeast corner); • recognize that some trees will need to be removed to make room for built structures (parking lots, roads, buildings). priority will be placed on retaining mature douglas fir in central knoll and along site perimeters. decrease visual and auditory impact of trans-canada highway: • increase height of existing berm according to sound calculations and need for enclosure; • recognize this as a major opportunity to create a restorative enclosure landscape form, by enhancing landform with vegetation; • design this area of the berm as a useable trail to act as a 'precedent' for future connections along the trans-canada highway. facilitate views to significant regional landmarks: • promote southeast views to mt. baker via building orientation/orientation of roof gardens and terraces. hospital buildings should be oriented primarily southeast to take advantage of sunny exposure as well as mt. baker views; • orientation of built structure should enable southern views to agricultural fields and regionally familiar activities (gardens/crops, etc.); • placement of open space programs should be done in consideration of views from hospital building. in particular, those hospital units that feature long-term stay or required bed rest should have enabled views to south and southeast features and landmarks. connect with neighbors and neighboring amenities in program and design development: • hospital building mass and height should be designed in consideration of the size of neighboring seniors' facilities (stepping of hospital buildings may be appropriate). as well, large open space should be located and designed to serve the hospital as well as these neighboring facilities; m connections to mill lake recreation site to the north should be considered in new road and entrance development, perhaps by creating a loop through the hospital that extends to connect with the mill lake loop; • the design and programming should take advantage of the relatively isolated nature of the site (minimal to no restaurants, shops or coffee shops) in order to draw community members onto site. maximize potential for 'living landscape' in a sustainable manner. this will require: • enhancement and creation of preferred habitat landscapes for birds and mammals; • involvement of the local community in open space programming and management (proposal will be included in program development); • inclusion of maintenance requirements in design proposal; • development of water body on site according to stormwater collection requirements of proposed building. . site-specific design objectives . existing topography will be used to create open spaces and a sense of enclosure. . a strong effort will be made to retain mature trees and landscape units. . the visual and auditory impact of the trans-canada highway will be reduced. . views to significant regional landmarks will be promoted. . neighbors and neighboring amenities will be considered in all design moves. . a sustainable approach design will guide the process . t o notes. final grading will be shown on master plan of completed design. retained trees will be marked on final plan. a biodiversity overlay will identify both retained and created areas for habitat. the enhanced berm will be constructed according to calculations shown. a general description of hospital program placement will be detailed in the next chapter. program placement will be done according to both functional and restorative requirements. sensitivity to neighbors will be illustrated in drawings that propose general building appearance and staggering of building heights. large-scale cross-sections of the proposed built structure will be presented. calculations for the pond and marsh to retain stormwater have been done using a rough estimate of changes to runoff. - - chapter vii a vision for restorative hospital design: the valley health centre (vhc) . site narratives the intention of this project was to give an image and sense of the restorative hospital landscape. experiential qualities of the design were a strong motivator for design decisions. the goal was to create a place that would be living, breathing, familiar, and accessible and would offer an appropriate blend of legibility and mystery. considerations of the diverse intended users (hospital in- patients, out patients, visitors, staff members and community interests) led to the development of a design for a place that while globally restorative, offers unique opportunities along a continuum of needs and abilities. . . the p a t i e n t ' s e x p e r i e n c e "our arrival to the hospital was easy to understand...everyone arrives at the same central place off marshall road. my sister dropped me off and then continued on to the underground parking. i was automatically drawn towards the hospital's front glassed-in atrium. i could see reception inside but there were also views to a little forest tucked in behind the hospital building... my -bed room faced out over an almost farm-like area where i could see sheep grazing, kids picking fruit, and gardeners tying back raspberry canes. mt. baker loomed over the whole scene. feeling pretty good today before my surgery i thought i'd go down and walk along the paths i could see winding in and out. i grabbed a drink and a magazine from the community cafe and headed out along the orchard walk..." . . the staff member's experience "since i usually arrive late at night and walk from the parking lot, i appreciate the well-lit pathway. it feels very safe. i can see the emergency entrance from my car. last night i nearly exploded after some patient threw a tray at me. i almost felt like starting smoking again. instead i escaped outside to our private garden and tried to pretend i was somewhere else. it actually made me feel better.... " . . the p u b l i c e x p e r i e n c e i moved into menno home a year ago when my arthritis got really bad and i couldn't get around without my wheelchair. before they put up the new valley health centre, there wasn't anywhere around for me to go on my own. i feel much more independent now. i try to leave menno home once or twice a week and wheel myself down the hospital's back lane to take lunch in their cafe. even in bad weather, i can sit inside the cafeteria and enjoy the garden view and the view to the marsh. it's also great to be able to just sit and people watch (or birdwatch...or squirrel watch) . those of us who meet here, - particularly on sunny days, move the tables around so we can watch the people passing by and challenge younger people to games of chess. they have a group of volunteers here that help take care of the gardens, bring in pets, talk to patients. last week i helped man the booth selling apples..." . introduction of design and program. a program and design has been put forth in this project for the proposed site in abbotsford, b.c., as discussed in chapter vi. an effort has been made to combine the functional with the restorative in order to create a hospital landscape that is welcoming to all members of the community, regardless of individual health or well-being. this hospital landscape has been designed differently from typical modern health care facilities. it is not like the typical urban hospital that thousands of people pass by daily on foot but dare not enter. it is not like the typical rural hospital that hundreds pass by daily in car without realizing its existence. this hospital site stands as a -acre ( . - hectare) landscape designed to welcome the fraser valley community onto its grounds, regardless of ability, age or health status. it is a place where healing through technology and healing through nature occur simultaneously. it is a place where the environment works with rather than against the caregivers to reduce stress, cure illness, and promote well-being of patients. it is a place that recognizes that these caregivers are themselves facing crisis proportions of work-related stress and offers them refuge and retreat. the valley health centre (vhc) strives to stand as a precedent for restorative design and a new vision for the future of health care design. this project required telescoping between a variety of scales. the many facets of hospital design required a process that was at times loose and sketchy and yet at other times overly concerned with data, grading and calculations. the vision, or conceptual site plan, is presented and then explained through several analysis maps (key views, circulation, open space, biodiversity, etc.). program elements are described with both text and with images. the following page features an image of the final master plan. through mapping, analysis, and written text, this design will be scrutinized and critiqued for its ability to adhere to the principles set out in this project. a combination of traditional, functional reference points are combined with more unique, restorative focused means of measurement. two larger pullout versions of the master plan, with graphic scales, are included at the end of this chapter, showing proposed schemes for grading and vegetation retention. certain design elements referenced in this chapter may appear in the chapter to follow. - - mu «v $m i' f < ulljm ^ rr i o ,:-ij' n / v *. g, ' ; • , i ° uti - .! figure - : master plan for fvhc (fraser valley health centre). (refer to figures - and - for grading and vegetation schemes). - - reiteration of project goals: holistic restorative characteristics. every landscape within the site is considered part of the whole. as an entity, this site design aims to incorporate the four following restorative characteristics: . archetypal landscape. the landscape plan makes use of archetypal forms that are inherently familiar and comfortable: the open meadow, the protected clearing, and the prospect lookout (roof top gardens, berm lookouts). significantly, a very large open space area hugged by a constructed, treed berm along the trans- canada highway creates a strong sense of enclosure. existing large open areas of pasture have been retained for their therapeutic value (human preference) as well as their value to certain types of habitat. . compatible landscape. the landscape plan offers a range of choices for degrees of legibility with some areas very functional and legible (areas of high stress-e.g. emergency entrance, main entrance) and others offering more mystery and intrigue (areas for play or retreat-e.g. open shared space, private gardens). throughout the landscape are clear indications of regional belonging: views to mount baker, views to mature douglas fir trees, views to local raspberry farms. the landscape is designed to promote a sense of security and control with lighting of sensitive areas, choices for movement (refer to circulation diagrams that follow). redundancy is an important feature of the pathways created on this site for two primary reasons: to give users a sense of control over their actions and to reduce the risk of entering into unsafe situations. . life-supporting landscape. the living landscape proposed in this design features food, water, birds, animals, and farming. biological diversity is facilitated through the creation of a wetland marsh, as well as plant choices and plant arrangements (linear connections, vertical stratification, and habitat attracting plants). a unique mode of analysis used to determine layout for both open space and built form paid attention to current or potential habitat values. open space was evaluated for its worth as a life-giving force before, rather than after the "creation" of the design. attention to landscaping should extend off-site and up primrose avenue two rural blocks to connect to the rich and diverse mill lake. this intervention has been described previously in chapter vi. this now quiet route is currently accessible to patients in wheelchairs from neighboring senior's facilities. with the construction of a large hospital traffic will increase. for this reason, a street retrofit (with canopy street trees, wide sidewalk and rest stops) is proposed. . accessible landscape. movement into and through the landscape has been designed in an equitable manner so that all users, regardless of ability, feel welcomed. patients in wheelchairs will have access throughout the living landscape (forest, marsh, and orchard) during all seasons along simple asphalt pathways graded to no more than %. in areas where a more natural appearance is - - preferred, yet there is still a strong need for firm support under the weight of traffic (e.g. emergency vehicle routes and turnarounds), grass crete planted with sweet woodruff or thyme has been suggested. rest stops along major paths will be no farther apart than metres (mooney, , p. ) . visual access will be a strong consideration: from the streets/highways (gladwin, marshall and the trans-canada), from the neighbours (menno home and hospital, mayfair senior's home, and several nearby single family homes), and from inside the buildings (windows sited . metre from floor to enable views from beds). significant changes in grade on the site combined with a strong desire to maintain site-specificity and avoid the "blank slate approach" to design created an interesting, and oftentimes, frustrating exercise in grading. the resulting design, however, accomplishes the goals of accessibility and also creates interesting areas of peaks, lookouts, ravines and marshes. the practical, functional side of hospital design reared its ugly head early on in the design process. by dealing with these issues head on, however, it has been possible to envision simple possibilities that are surprising in their simplicity and their ability to combine function with therapeutic benefit. for example, the design required a minimum to - metre clearance around all building edges with a -metre turning radius for emergency vehicles. this challenge presented an opportunity to create instant, accessible outdoor spaces for pushing patients in wheelchairs and beds outside for fresh air. . design process having developed the goals for design and the program for the site, the challenge was to translate philosophy and vision into a workable solution. early design exploration focused purely on the conceptual. rough sketches were used to make sense of a large site and a complicated program. the most effective approach discovered for this project was to move back and forth between the qualitative (pure imagination, instincts, and preferences) and a developed set of quantitative measures/mappings by which to rate the progress of the design. these measures will be discussed here (in text and graphic) in an effort to prove the validity of the final design. the design process was most successful when guided by the following tenets: . sustainable practices as a mandatory component of design. accept the fundamentals of figure - : example of one of multiple sustainable growth and rough conceptual design sketches. development and allow them to help guide the design: - - • identify an open space typology that respects both humans and habitat through promotion of biodiversity, • take advantage of local bylaws that demand stormwater detention on- site to create a beneficial water body. measure: biodiversity mapping. . site layout: general considerations are strongly affected by site analysis. maintain respect for findings of site analysis and aim to keep valuable resources (site-specificity): • understand negative impacts on the site and find solutions that can be restorative as well as functional. for example, building a sound berm that blocks out noise from the highway has the added benefit of creating an area with a strong sense of comforting enclosure, • achieve a balance between the newly created and the preserved. for example, transitions between retained portions of the central treed knoll and other open spaces should be done in a harmonious manner (use native plants, balance open and closed areas, enable views into the treed knoll), understand through local research what measures will be most effective in this region (physically, socially, economically, and culturally). for example, while an open space program that features edible landscaping might not 'fit' into a more urban area, it does coincide with local traditions and preferences, develop a sense of pride for regional landmarks and develop a site plan which maintains key views to regional landmarks. figure - : example of one of multiple rough conceptual design sketches. measure: general delineation. layout considerations mapping and built program . visual access to the landscape of high importance to all users of site. assess current key views to be protected and vision future views: • consider important indoor-outdoor visual relationships. measure: key view mapping. . circulation requires a combination of legibility and mystery. understand and accept the importance of a foolproof circulation pattern that will not heighten stress levels: - - • treat perceived obstacles as challenges to find new solutions (clustered parking enhances safety and reduces cost of security, emergency access creates accessible surfaces for bed-patients). measure: circulation mapping. . community participation integral to project survival. explore the potential for inclusion of community members in the design/program and its ultimate survival: • identify what roles they can and cannot play. • delineate areas within the design that will be particular to one or more user groups. measure: open space organization and management. . sustainable practices: required component of design sustainability is commonly referred to as living one's life in a manner in which the world will be protected for future generations (earth summit, ). in , the world commission on environment and development developed a definition of sustainability that was included in its findings, which became known as the brundtland report (bruntland, ). "development that meets the needs of the present without compromising the ability of future generations to meet their own needs". • the world commission on environment and development, brundtland commission, . at the earth summit in rio de janeiro, , this definition was affirmed and elaborated upon. "human beings are at the centre of concerns for sustainable development. they are entitled to a healthy and productive life in harmony with nature" (earth summit, ) . for architecture and landscape architecture, this means "design that delivers buildings and communities with lower environmental impacts while enhancing health, productivity, community, and quality of life" (callenbach, ). sustainability is not limited to impacts on the natural environment, but on individuals and the community at large as well. a common concept often referred to in sustainable design is the 'green triangle of environment, economy and equity'. social sustainability, environmental sustainability, and economic sustainability necessarily go hand in hand. "any time you do something beneficial for one of them, you will almost inevitably do something beneficial for the other two" (callenbach, ). while the focus of this thesis project is to attempt to influence the health and well-being of those individuals in current contact with the hospital environment, it would be delinquent to proceed without concern for future resources. steps taken in the design process have been with consideration of economic, social, and environmental sustainability. as discussed previously, a hospital landscape that is designed with the users in mind will affect the long-term health (economic and social) of users ranging from patients to staff to community members. economic benefits have been hypothesized as deriving from a reduction in stress amongst staff and therefore a reduction in absenteeism, and higher productivity. stress reduction in the patient and family poulations should be reflected - - in better response to treatment, shorter hospital stays, and less demands on caregivers (ulrich, ). certain measures have been taken to heighten the "ecological sustainability" of this proposed design. in particular, efforts were focused in the area of habitat protection and enhancement. this will take form in three primary ways: . analysis of landscape units within proposed site plan that may provide (now or in the future) benefit to birds, small mammals, insects, amphibians and other beneficial native creatures; . collection of water run-off on-site in order to prevent further degradation of streams entering the fragile fraser river system and its fluctuating salmon population; . development of a program by which community members can actively participate in the land stewardship, thereby increasing awareness, volunteerism, and a sense of civic duty towards protection of regional landscapes. it is hoped that any program initiative will involve local schoolchildren to help further the awareness and education of youth. while the above are stated as measures to promote sustainable and responsible protection of regional resources, each intervention will have the double effect of being restorative and therapeutic by nature. as discussed previously, exposure to nature has strong healing effects that are enhanced with any degree of participation. hospital patients, staff and visitors receive restorative benefits through the act of simply viewing a stream, pond or marsh. the opportunity to actively monitor and count rises in bird, fish or mammal populations will only enhance this effect by increasing level of interaction with nature (lewis, ) . . . biological diversity enhancement. refer to figure - : biodiversity analysis. efforts to promote biological diversity (biodiversity) and prevent and/or slow down the continuing extinction of species offer significant restorative benefits by enhancing the "living" nature of the landscape (kellert and wilson, ) . this task, however, is also considered by many experts to be perhaps the most significant ecological emergency by modern man from a purely ecological standpoint. e.o. wilson describes our "mass extinction of species" as being the "most destructive global environmental change of all time" (wilson, ) . an effort has been made to not simply attract animals and birds to this proposed hospital site but rather to enhance or in some cases, simply protect, habitat that is already vital to the survival of local species. unfortunately, the choppy nature of suburban development has left few terrestrial resources that can be relied upon to create linear connections. disconnected from its natural surroundings by the trans- canada highway to the south and urban abbotsford to the north, a concerted effort on site is required to enhance biodiversity. habitat (or ecosystem) may be generally referred to as a particular environment that allows a particular species to live and thrive (harding, ). man's disturbance of the landscape has disrupted the natural - - progression of habitats for mammals, birds, insects and amphibians. efforts to bring life onto a landscape will have the double benefit of producing restorative benefits for humans, and creating or returning habitat for creatures, promoting regional biodiversity. the site was analyzed for potential or present ecosystems. any identified spaces will be enhanced or protected, and in some cases, recreated. planting styles and plant choices are dependent on their ability to attract living creatures. for example, whenever possible, vertical stratification, linear connections and an edible palette has been used. plants (trees, shrubs, and groundcovers) that offer forage, nesting, movement, or lookout opportunities are maximized. interventions or enhancements will range from colourful, sunny gardens designed to attract hummingbirds and butterflies to hedgerows created with a variety of native species that will be used for bird and small mammal movement and nesting. red-listed species (considered high risk for extinction) will be recognized as needing high priority measures. for example, several hawks and owls are at risk in british columbia (harding and mccullum, ). construction of hawk and owl friendly landscape typologies will be considered. an open pasture edged by tall "lookout" trees (existing conifers) will provide forage space. an ephemeral mowing system versus regular lawn clipping will enhance forage potential. allowing existing and "new" old fields to evolve naturally will also contribute. the site will also be managed to prevent further disruption to natural conditions. invasive exotic plantings will be avoided. despite the aesthetic and possible visual restorative benefits of exotic wild flowers, these plants disrupt and take the place of native flora (and, subsequently, disrupt the local habitat). specific small-scale interventions to enhance existence of certain species may also be introduced (e.g. wood duck nesting boxes). in the previous chapter on site analysis, several open spaces were identified as potentially restorative, either for their abilities to create archetypal experiences or their abilities to promote a landscape alive with birds, mammals and/or community members (e.g. gardening). figure - outlined a basic preliminary assessment of the site in terms of restorative potential. the design proposed here makes use of several of those potentials, and makes a point of including new areas of habitat to enhance regional biodiversity. the following diagram is an assessment of the final proposed design in terms of its ability to enhance and protect habitat biodiversity on the hospital site. this is merely the first of several 'analyses' by which designs were evaluated. - - "bio wftfsl^ - bifiphjia •* refer -f-o fc^ for descriptions cx > ce> cs) cx> ' s > •'••'?} ."€> d b ,xx> - " • fru'i o r e h a r q gjar en ce<fc t w t o n d - harsh taiturt woo lan<l conifer slant) tfi« t r e e sfanq cm fiem t i n i w t tlan+i'ncjs he.iotrov( figure - : biodiversity analysis of proposed site plan. several significant open space types of high habitat value are identified as currently existing and/or possible to create with a minimum of effort. designing for the protection of habitat results in a diversity of spaces also restorative to humans. the preferred open pasture provides sustenance for raptors and owls. orchards and gardens for human cultivation attract small animals and birds. sunny areas planted with bright reds and yellows attract hummingbirds. old fields (abandoned orchards) are not only valuable due to their increasingly unique nature, but they also give strong ties to regional childhood experiences. the identified habitat types in this proposed scheme offer a great mix of biodiversity, offering both social and ecological (and, if gardens prove fruitful, perhaps economical) sustainability. . . stormwater collection. refer to figure - : concept plan constructed wetland on following page. as well as promoting biodiversity and providing restorative benefits, a marshland will serve to collect on-site stormwater runoff. enhancing the current low topography site and creating a marshland has multiple benefits for humans and for the environment. wetlands in developed areas provide wildlife habitat, store and improve the quality of stormwater runoff, and prevent degradation of streams and loss of fish habitat farther down the system. the wetland should be as large as possible, in order to maximize: • bird species that will be attracted, • runoff storage and treatment capacity, and • restorative wetland edge available. it is possible, and is often the practice, to construct detention ponds that collect stormwater but do not attract birds and wildlife. a study by the national institute for urban wildlife, however, showed that urban residents vastly preferred ponds or marshes designed purposefully to attract habitat (link, ). detention pond design considerations and calculations. for assessment of predevelopment stormwater calculations, the . -hectare ( -acre) site was considered to be approximately twice as much area in flat pasture with well-drained soil as hilly woodland, also with well- drained soil. for post-development calculations, hard roofs and/or paving were estimated to take up m , with reductions in both hilly woodland and flat pasture. in actual fact, this number may be reduced by the addition of green roofs and roof gardens. within the built environment, practices that minimize stormwater runoff will be used encouraged. these are: => outdoor parking lots designed with swales for water collection, => turf roofs used to decrease runoff, => roof runoff directed into planting beds or to larger marshland or accessible rain barrels to create "rain gardens" with multiple benefits. detention pond sizing was calculated for a -year storm, as the desired effect would be to have standing water in as much of the area as often as possible. the conceptual plan of the constructed wetland to follow gives an indication of the water feature design intention: depth of pond will vary from areas of emergent wetland and actual "island" to areas of standing water (lined pool). a fountain and waterfall extending from the plaza into the wetland will feature a circulating pump system for water. the 'stages' of the water feature will be: • a lined pond will be created closest to the hospital and its programs and will be accessible by a level path, • an unlined pond with gradations in depth will extend out into the open space landscape, and will also be accessible to the largest number of users (grade less than % and year-round materials for pathways), • f a r t h e s t from t h e h o s p i t a l and a t t h e l o w e s t p o i n t w i l l be a s h a l l o w marshland c o n s t r u c t i o n t h a t w i l l s e r v e p r i m a r i l y f o r b i r d / a m p h i b i a n h a b i t a t enhancement. v i s u a l a c c e s s w i l l be made a v a i l a b l e from a simply d e s i g n e d l o o k o u t p o i n t b u t p h y s i c a l a c c e s s w i l l be l i m i t e d t o v o l u n t e e r s . predevelopment q=cia = . ( year storm h) a: acres post development h i l l y woodland c=. x m flat p a s t u r e c=. x m cave= ( x . } ( x . ) so, = . x . x c= roofs/paving c=. x m hilly woodland c=. x m flat pasture c=. x m cave= ( x . )+( x . ) + =( x . ) = . = - . ft /a i so, q» . x . x = . ft /s detention pond sizing time min/sec ( ) ( ) ( ) ( ) ( ) ( ) ( ) post development inflow ft /s . . . . . cvmu ft pre development outflow m /s . . . . . . . cumu ft net storage ft - - maximum storage volume required^ comrersion= m ) depth calculation: ft for year- hour storm (metric m = m in plan at . m (average) figure - (above): stormwater detention calculations figure - (right): conceptual plan of constructed wetland constructed pond and wetland community considered project. these issues will be discussed later in this chapter and proposal for community stewardship involvement. involvement, stewardship and educational programs are integral aspects of the ensured sustainability of any in a discussion - - . hospital program: site layout refer to figures - through - (site layout general considerations and program placements) on following pages. at the time of this proposed design, the defined hospital program included: . a regional acute care hospital of beds was planned. a wide variety of programs were anticipated including emergency, maternity, oncology, medical-surgical, intensive care, and geriatrics. a large mental health/psychiatry program was planned. . a cancer clinic (outpatient treatment and diagnostics, including radiation therapy) was planned. . a wellness centre was planned. the program for the wellness centre is defined for this project as: • outpatient teaching, programs and follow-up, • staff recreation facilities, • teaching facilities for community and staff (including auditorium), • administration and staff services (payroll, human resources, etc.) will also be maintained in this structure. the total area required for the built program is , square metres (source: fvhr project home page, ). in order to design for specific users, an attempt to program hospital functions and locate important destinations has been made and is outlined in the footprint concepts that follow in figures - , - , and - . it would be expected that rather than placing programs and facilities in isolation, this task would best be done in consultation with the various staff members and experts in the individual fields. a pavilion-style of construction combined with a central tower was chosen to maximize views to surrounding open space and regional landmarks. this style (long, linear buildings) also allows for a higher degree of natural sunlight for all patient (and staff/visitor rooms) as well as an increase in legibility. many current architects, critical of the dinosaur nature of modern hospitals are returning to this th- th century style of construction (pearson, ). in this proposal, however, rather than looking out over a private hospital courtyard, views are directed to open space, shared with the local community. . . general recommendations for siting of programs and building layout. many of the decisions made were drawn from both the earlier discussions on specific user needs and on the results of the site analysis. for example, patients suffering from high stress illness (cardiac care, intensive care, psychiatry, etc.) were given priority for views to positive distraction. patients entering the hospital for short stay, diagnostics, and tests that create a high index of fear were given priority access to outdoor plaza, cafeteria, and accessible walkways. a strong effort was made to group patients together rather than segregate. it is with purpose that the hospital has one main cafeteria rather than several small satellites. placement of the primary open space was also made in consideration of senior neighbours as well as recreationalists. certain populations, by- virtue of their illness were located more towards the inner shady core that surrounds the retained douglas fir knoll (for example, cancer treatment). all patients, however, have access to both sunny and shady areas within the hospital environs. a strong effort was made to retain and enhance site resources whenever possible and to use disadvantages as benefits. figure - : site layout considerations (simplified for graphic purposes). • the bulk of inpatient rooms are oriented to southwest or southeast open space with some rooms facing the more intimate inner forest core: patients will be afforded a choice of views. • siting and layout of built structures responds to open space programs with creation of large and small enclosures. • sharing of open space, of entrances, and of parking will work to integrate rather than segregate. • the southeastern low point (behind constructed berm necessary for noise protection) creates a perfect potential for shared open space. the new design of the open space creates a form of 'cloister' situated between highway, new hospital, and neighboring senior's facilities. • walkways through the hospital are direct, leading from elevator to elevator, with the cafeteria as midpoint. walkways will be lined with windows on both sides to enable outdoor views. the initial entry will feature views direct to nature beyond. - - • staggered heights of buildings facilitate views and enhance human scale. by concentrating the height of buildings towards the centre of the complex, the hospital will also blend in more appropriately with the surrounding small-scale houses/complexes. • strong indoor-outdoor relationships are created to improve views to nature and promote fascination. these include: atria with greenery, skylights, roof gardens, water fountains, indoor aquariums. • building orientation takes advantage of views to mount baker, views to open space, views to nature, and views south to agricultural fields. • roof gardens are accessible when possible. • configuration of buildings in this manner allows for the retention of a large portion of the central knoll of douglas fir. several other important or potentially important identified habitat areas are also protected-refer to biodiversity mapping, figure - ) . • choices for sun or shade are made possible via building orientation. • windows will be set no higher than . metre off floor to facilitate views from beds. • use of the hospital tower promotes opportunities for walking indoors. • primary street access is from marshall at gladwin, the current site of a transit stop. gladwin road becomes a side access for parking as well as a main entrance for emergency vehicles. • an evident street face is defined, and shared open space is defined. parking has been clustered to enhance safety and security for staff as well as to improve wayfinding by visitors/patients. lighting of significant pathways will be vital for this -hour environment. figure - : example of lighting: image of kaiser permanente medical complex in fontana, ca. nighttime building illumination from top down scatters light towards and onto walkways, giving a sense of connection and security. lighting would continue in this manner along paths by illumination of lane trees. day and evening lighting effects can also be achieved through appropriate placement of trees in relation to sun angles. - - marshall road "o o o c sdddd ( h p a r k i n s dddd wellness centre & library -storey ( + m e t r e s ) : : "i i : cancer clinic -storey ( + m e t r e s ) below ground -storey + metres) b e l o i v g r o u n d s e r v i c i e v e l s o f p a r k i n ddtlqud ( i n c l u d e s d i s a b l e d ) (diukry).- em wing: paji^nt kcoms{upper floors) & service^acilities (lower floors) -storey { + m e t r e s ) below ground s e r v i c e s : elivery, s t o r e s , e t c . back lane disaster parking (est. cars) ddddddd ddddddd ddtodd dlotdd ddddddd ddddddd central tower (nursing units) " r o o f top garden** -storey ( + m e t r e s ) below ground s e r v i c e s : levels of parking . . . t h i r d f l o o r c a n c e r clinic c o u n s e l l i n g and t r e a t m e n t s u p p o r t s t a f f o u t p a t i e n t r s e c u r e s t a f f a r e a s : m e d i c a l r e c o r d s p h a r m a c y k f l ccu/ cu r s i n g u n i t s fifth floor s i g e r i a t r i c s - p e d i a t r i c s a n d s h a r e d g a r d e n f o u r t h f l o o r c a n c e r c l i n i c c o u n s e l l i n g a n d t r e a t m e n t n u r s i n g u n i t s b i • ( p s y c h i a t r y : o f f i c e s : t r a d i t i o n a l v i e w s a n d b a l c o n y ) a n d a l t e r n a t i v e p a l l i a t i v e care ( b a l c o n y g a r d e n ) v f l nursing u n i t s s i x t h f l o o r n u r s i n g u n i t s figure - : built program basics. figure - : program proposals, floors to . ground minus ground floor wellness c e n t r e : a u d i t o r i u m , library, c l a s s r o o m s c a n c e r clinic r e c e p t i o n = p i t a i r e c e p t i o n tttng a r e a d i a g n o s t i c s cafeteria c o n n e c t i o n t o o u t d o o r o p e n s p a c e p u r c h a s i n g , e l e c t r i c a l , s e r v i c e s ground minus s t o r a g e e l e c t r i c a l r a d i a t i o n rooms d e l i v e r y / s t o r e s a u t o p s y p a r k i n g ( c a r s ) i s second floor r e c r e a t i o n f a c i l i t i e s c a n c e r chnlc • c o u n s e l l i n g • o u t d o o r b a l c o n y s t o r e s , p h y s i c a l p l a n t o f f i c e s , s u p p o r t • or'ccr s t e p d o w n c a r d i a c and t e l e m e t r y seventh floor nursing u n i t s ninth floor nursing units eighth floor nursing units tenth floor staff resources and private garden (staff and/or special occasions figure - : program proposals, floors g- to , figure - : program proposals, floors to . . . proposed hospital programs. an exploration into program placement that "fits" with the design is shown in these diagrams. programs were situated according to an assessment of needs for sun or shade, views to nature versus views to activity, proximity to outdoors, as well as potentials to group users together for social support and/or efficiency in shared open space. . efforts are made to minimize mass of building. the building is staggered, with a central tower "hidden" amongst the douglas fir woodlot. . parking (both under and above ground) is offered in this still largely rural area. until transit catches up, patients, visitors and staff will be highly dependent on the automobile. parking is clustered for safety purposes with below ground stalls, above ground stalls, and flexible above ground temporary parking (main entrance street and back lane*) . in the case of a disaster response, however, this lane could be opened up to handle + extra cars. . patient wings are located primarily to the south and south east of the building in order to facilitate views to landmarks as well as the open space program. offices, generally located in the central entrance core of the hospital do not have the same views of open space but they are privy to sunlight and views of the shared entrance area. . placement/programs of specific patient populations follows the discussion in chapter iv. for example, diagnostic patients have easy access to outdoor gardens, walking routes, and the cafe. . clustering of buildings and programs maximizes open space and allows for retention of existing resources, views, and vegetation. - - . key views. given the strong evidence of the restorative benefits that result from visual access to nature, consideration of key views was considered of high importance. key views are identified as those subject to one or more of the following elements: . high frequency. for example, views outside the windows of icu/ccu patient rooms are very important as these patients may be confined to bedrest for days, weeks or longer. attention not only to the scenic beauty and the restorative quality of the view is important, but also consideration of seasonal and temporal changes to spark fascination in the viewers. the most pastoral of views will become a source of sensory deprivation without some signs of life, evolution and change. . high number of viewers. for example, if the cafeteria is to become a welcoming place for staff, visitors, patients and community members alike, then this view will require enough interest to appeal to a wide range of users. hallways, entrances, and waiting areas may be used by very large numbers of persons and yet are often overlooked as viewing opportunities. . high expectations. a rooftop garden that offers views to mount baker and southern agricultural fields should be oriented in such a way as to enable a full and complete vista. vegetation growing along the enhanced berm (southeastern corner) may need to be pruned and maintained to preserve the integrity of this view. criteria for evaluation of key views has been adapted from the procedures and standards for visual landscape inventory used by the british columbia ministry of forests (b.c. ministry of forests, ). there are some areas (e.g. primary entrance, cafeteria with view to open space) that will be affected by all three parameters and are therefore vital for maintenance and attention. as discussed in the previous chapter on site analysis, exterior views are vital to this region (views to mountains and agricultural fields). these views are enhanced through the construction of the central tower as well as a proposal for several rooftop gardens that allow individuals to ascend to key viewing points. interior site views will also be important in both the enclosed marshland and the douglas fir woodlot. views into the site have also been considered. for example, small areas of orchard trees will be visible from both marshall road and the trans- canada highway, giving motorists a visible cue to the site. the site should present a welcoming presence in order to encourage community use. this may range from the functional placement of a popular coffee shop near the entrance to an unobstructed view along a winding bicycle/walking path. it is also noted on the key view map that visual access through the built form has been highlighted in some areas. most importantly, the entrance offers a view not only into the reception lobby but directly through to the woodlot behind, enhancing the sense of access, comfort and enclosure without blocking the entrance of sunlight. glass atria and glass-covered walkways are envisioned throughout the site providing easy visual access to nature: trees, water, open space, and habitat. - - the primary key view facilitated/promoted by this design are as follows: key views: high frenuency, high duration, high number of viewers, ano/pr high expectations, ' refer to key for view specifics. figure - : key views (interior and exterior) influencing site design. view . . . . . . . . . . . . . . . . description welcoming street face with hints of landscape beyond: visible orchard, sunny entrances. sky roof over community auditorium leading to health library and outdoor reading room. legible view to emergency. clear visual access for ambulances. view from er to orchard filled berm: sense of protective enclosure, view of living landscape. view from highway to hospital orchard: visual cue. from upper tower and roof garden, view to landmark mt. baker. from cafe and patient rooms (n.b. ccu/icu), view to interior landscape: design for biophilia. view from mayfair home to open space and cafe: welcoming. welcoming views from marshall road (to open space and cafe). view from marshall road (and menno home) to front yard orchard: visual cue, invitation. view from psychiatry (n.b. lounge, locked rooms) to woodlot and old orchard. view from tower (all floors) to interior woodlot. view from diagnostics indoor waiting area to outdoor waiting area and woodlot trail access. view along hospital corridor to interior woodlot and waiting areas. view from main entrance/reception (hospital and cancer clinic) to woodlot garden area. interior views of native coniferous "forest": - year-old douglas fir trees, some alder/cottonwood/maple. - - . site circulation. . . requirements. main street: a legible main street entrance with easy physical and visual access to main entrances and parking. entrances to the main programs will be shared to avoid stigmatizing one group. on-street parking will be available as well as a drop-off and turn-around. emergency street: an easy access route will be available for ambulances. this should be a secondary access point only for public and staff. street parking will be disallowed to decrease potential conflict between cars and emergency vehicles. fire and emergency lanes: emergency access is planned throughout the site open space and around all built forms. a -metre perimeter around the building is graded and paved, with grass-crete installed where necessary to provide access for fire vehicles. experiential roads and paths: the delights of a back country road are provided for in the open space program with a curvilinear path that features a water crossing. vehicular access is limited and road parking is available only for community volunteers. walking, jogging, cycling, roller blading, and equestrian passage will be encouraged along this pathway. a variety of pathways, some simple, circular and direct and others more circuitous give users a variety of options and a sense of control. secondary recreation connections: as discussed briefly in chapter vi (site analysis), it is considered vital to include in the site circulation connections to off-site amenities. a "wellness walkway" route along primrose avenue would require little more than simple street restoration to enhance this flat access to the mill lake viewpoint. this route then connects to a more challenging path that traverses mill lake and returns to the site via the steeper gladwin road. this presents a recreational opportunity for staff as well as community members. the aforementioned "trans-canada green" (running along highway edge) should also be considered during berm construction. . . vehicular circulation. legibility is high on the list of priorities for circulation in the hospital environment. from emergency vehicles to anxious patients and families, to staff members late for work, the priority is to get to the hospital as quickly as possible. primary access for all users is simple and direct, although there is provision for a more pastoral back lane drive. the two major entrances are clearly evident (main and emergency) as are entrances to parking (above and below ground). provisions have also been made for visitors to park briefly on the main entrance street while waiting for relatives or friends. - - j a a j a a a g i -*<~ i ^ - . i > u l w , f i l«rdl i wa! n access * p**,^ ia.-* section - tlevstion ggs=^»- ^ £ka ' :^rytmf, l l j z j a i jjoe lzaizaj phrwnd i l o o t . r . access * *o pi'k.r,^ on si-rte* it^v qftcriftgil ?em pasture back lane. pr&fli. restricted icesss/bti+s.n. figure - : typical street and lane profiles for restorative facility. main street access (view south into site off marshall road): urban typology, shared entrance. emergency vehicle primary access (view east into site off gladwin road): limited access. back lane access: rural typology, restricted for recreational and open space s tewardship programs. primary access to the vhc is from marshall road (runs east to west). all new arrivals to the hospital are dropped off or arrive at the main entrance off marshall. connections to all three major programs (regional hospital, cancer clinic, wellness centre) can be made from this central location, thus promoting a sense of legibility and community. aboveground parking is grouped on the western edge of site, within a short walking - - distance of the hospital. this area will have special attention to lighting and security present at change of shift for staff security. secondary access is via gladwin road (no exit road running north to south along western site edge). this secondary route will be used primarily for ambulance arrivals and for staff (close to parking). permitted on this street and street trees are kept to a clear visual access in parking is not minimum to enable as discussed, vehicles have all building to open space, is used in soft ground create a more natural appearance to these functional areas. emergencies. emergency access to fronts and grasscrete potentially areas to awjiggacjigg mmsoowmt mm—mob cross-section be a- vr tmck oaaucjwtt figure - : grass crete section. source: www.progressiveconcrete.com delivery trucks have access via the "back lane" road. this is a -metre wide asphalt road with a gravel edge. this back road and "back door" delivery area will be visible to users on site. this is considered within character of this mixed urban/rural region. main access marshall road building front fire access to u parking o o o o o a o / back lane auto circulation major c'rcja-tion !•» minor circula+«»n o e m a h & s t i ' i c + e d (open ^pace. f-nkjrd/n) o o o o e m c r c j c / i c y a c c e s s only- figure - : circulation for automobiles: emphasis on legibility. - - http://www.progressiveconcrete.com . . self-powered (universal design). — - ftskafirt btpksis figure - : circulation: self-powered: emphasis on options. cyclists, pedestrians and wheelchairs access the hospital via the new entrance street or back lane depending on their destination. arrivals to the hospital, wellness centre, or cancer clinic all share the main entrance node. the back lane leads to the "community cafe" (cafeteria, coffee shop, limited retail) as well as to open space programs (marsh, pasture, gardening, orchards). several accessible walking paths are available on the vhc (valley health centre) property, passing through the woodlot, the orchards, the gardens, and around the pond/marsh. all these paths/roads are graded at less than % slope with frequent rest stops. distance between rest stops is dependent on anticipated use. in high use areas, rest stops occur every metres, and in low use areas are metres apart. the majority of paths are designed for year-round use (asphalt, grasscrete or crushed gravel). . . equestrian. local residents passing through on horseback can use the back lane and pasture and would exit on gladwin. the previously discussed 'trans- canada-green' corridor link along the highway will be a future resource for equestrian interests (refer to section . . , figure - ). - - . open space organization this analysis attempts to bring together restorative design on the land with^ the realities of practical management. the hospital design was examined and evaluated according to which areas necessarily fall under the jurisdiction of hospital management (primarily for maintenance and security) and which areas could become part of a "co-management process" or collaborative effort with local community groups. • • open space organization. hospital managed: visitor emphasis patient emphasis • m staff emphasis co-managed (public-private): figure - : open space organization and management (explanation on following page). the community emphasis of the open space program is made evident by the large area mapped as falling under "co-managed" jurisdiction. also identified within the hospital jurisdiction were areas with particular potential for meeting the needs of specific user groups. as noted on the diagram above, certain areas were chosen to highlight specific interventions for patients, visitors, staff or the community at large. it should be stated that although certain areas are being highlighted as special or unique for one population of users, it is expected that all users of the spaces will receive therapeutic benefit. for example, a highly restful and peaceful garden with flowing water and sounds of birds may provide great satisfaction to patients recovering from acute coronary incidents. this same garden, however, would also provide great benefit to that patient's family members and caregivers. - . . explanation of open space organization. management/ stewardship . hospital managed . hospital managed . hospital managed . hospital managed . co-managed (public- private) primary users all users patients visitors staff all users, including community members implications security and maintenance done by hospital staff, with costs and workload kept to a minimum. private fundraising may be required for construction of special gardens or spaces. garden and landscape programs may become components of medical therapy (physiotherapy, occupational therapy, pet therapy, follow-up programs post cardiovascular and/or cerebrovascular accidents, spinal cord or brain injury, psychiatric in/outpatient programs). the majority of these programs would require supervision by qualified medical staff. the larger open landscape is presented as an opportunity for co-management with a community group. this would involve a combined effort between management from the regional group and from the hospital, with decisions mutually agreed upon in regards to planting and programs. although the open space should remain open and available to all users, it does not preclude the possibility of contracting out local farmers to harvest crops, berries or raise limited livestock on the property. all of these activities would enhance the restorative benefit of the open space. . open space for all users-hospital managed: these include the more "urban" areas of the site (entrances, library garden, outdoor plaza/cafe) and those areas in such proximity to the hospital as to require special concern for security (e.g. the douglas fir woodlot). maintenance will be the responsibility of the hospital. . open space with emphasis on patient needs-hospital managed: although all patient groups have been considered in the design of this landscape, it was only possible to select a very few for illustration of specific interventions. highlighted for further exploration were two diverse groups with varying needs. a garden was designed to meet the needs of patients and families faced with cancer treatment. the psychiatric population was explored in terms of open space needs. as well, some general interventions to benefit all patients were proposed, for instance increasing the accessibility of outdoors to hospital patients. these interventions are illustrated and discussed in the following chapter. . open space with emphasis on the needs of visitors/outpatients-hospital managed: highlighted for further exploration is the internal strip of "potential" visitor space that is visually accessible from the entrance and corridors. - - . open space with emphasis on staff needs-hospital managed: it is anticipated that a variety of spaces will be required for staff: for meals, quick retreats and social/educational/recreational gatherings. considered vital are issues of security, brief retreats/refuge away from patients and areas to congregate. examples of consideration of staff needs are highlighted in the design in the following prototypical responses: • clustering of parking and well-lit primary passage from parking to hospital (cpted principles), • cafeteria space/coffee shared with community, • mount baker roof garden atop patient care tower intended for staff retreat (informal and formal gatherings), • private garden refuge outside emergency for er staff, support staff and ehs attendants, • easy and safe access to wellness centre for recreation/education. chosen for further exploration in this project are the two private staff refuges. . open space with emphasis on community needs: the primary user groups will be those members of the community concerned with stewardship of the land and those interested in recreation. ideally, a program that combines both objectives will develop over time. • public recreation opportunities on site include: dogwalking, jogging, strolling, picnicking, bird and animal watching, pick up sporting games, passive activities-reading, sunning, and people watching. the primary use area will be the open pasture and marshland with connection to the community cafe. washrooms will be shared with landscape volunteer facilities. educational opportunities will also be available at the outpatient/wellness centre, situated in the core of the main shared entrance. • public landscape stewardship opportunities: responsibilities and requirements are outlined below. . proposal for community landscape stewardship. the southeastern "skirt" of the design exists as an edible, living landscape that will require stewardship and management. in the public health care system, such expenditures are difficult to justify without significant community involvement. a proposal has been made to develop a co-management system of stewardship of this hospital open space. a volunteer community group-the "vhc healing gardeners society" is proposed to take on the shared management of this landscape unit with the hospital. the optimal condition would be to develop this society along with the public process set up to formulate goals and objectives for hospital design. local interest groups that may be approached to form the healing gardeners include: • central fraser valley naturalist society and other groups concerned with habitat, • local -h programs/farming clubs, • local berry farmers (able to offer equipment on loan and expertise), - - • local school groups (trinity western university, highschools, elementary schools), • local horticultural/plant appreciation societies and community gardening groups, • local professionals/technicians (foresters, landscape architects, engineers, carpenters, etc.) • senior's peer counseling of b.c., friends of schizophrenia and other community based programs of support. . . infrastructure required: the community will require a staging centre situated amidst the healing landscape agriculture. this centre should include: • tool shed/tractor shed/garden shed, • booth for seasonal produce marketing, • accessible road for tractor (share hospital delivery lane), • place for coffee-food-snacks, • place for visiting/learning/sharing, • washrooms and access to clean water, • barn/shed/shelter for visiting pasture animals, • area for public interaction with visiting animals, • potential for gardens/orchards to be used for rehabilitation purposes (e.g. accessible surfaces). . . responsibilities of volunteer group: the healing stewardship society will take on an active role in managing, maintaining and preserving the restorative open space and will meet, as - - required, with hospital management, security, horticultural therapists, health care providers and patients and families. the involvement and visible presence of the group will in itself provide benefits as preference for rural farmscapes has been shown to increase with the evidence of active stewardship (sheppard, ). specific responsibilities are discussed below. sub-area urban woodlot habitat orchards /berries /gardens open pasture lowland/ wetland all open space responsibilities monitoring of trail paths and trail rest stops will be required to ensure freedom from graffiti, and hazards (fallen branches, etc.) . it will be important to monitor the continuing health of trees and watch for potential blow-down. this is not expected to be a great concern as the retained trees are sheltered from significant wind by large buildings. shade loving bulbs and native herbaceous plants are visioned along forest edges of paths and volunteers will be responsible for the maintenance of this woodland edge. trees in the orchards will be chosen with public input (examples may be hazelnut, heritage apple or crabapple) . organic production, avoiding the use of pesticides will be recommended. at harvest times, the healing garden group may market produce from a booth situated near garden shed (accessible to hospital patients and staff). extra produce may be sold to local markets to raise funds. ensuring good maintenance and safety will be important. local farms will be solicited to bring in farm animals on a temporal basis to "mow" the open space. community members with attachment to rural property/ -h clubs, etc. will be encouraged to organize these domesticated grazing animal outings. locally available are horses, ponies, sheep, goats, llamas and dairy cattle. minimal fencing combined with hedgerows will contain the animals. monitoring and maintenance of the hedgerows will be required. the intention for this area is to allow it to flourish in a naturalistic manner. responsibilities will therefore include monitoring the balance between functionality and mystery. plantings may require pruning in order to enable safe views and safe passage. the volunteers may take on monitoring of habitat (counting/identification). the monitoring and elimination of exotic invasive plants will be the society's responsibility for all open space areas. a particular focus will be on the highly disruptive rubus discolor (himalayan blackberry) . this invasive shrub, although it does have some value as bird/small mammal habitat, is particularly aggressive in the fraser valley conditions. site analysis revealed a significant amount present in the lower reaches of the douglas fir woodlot. . . the community viewshed views within the site are strongly addressed in this design. perhaps equally as vital are the views into the site as experienced by passersby. drawing in the community involves more than programming and designing a welcoming inner sanctum. the community must first be drawn onto and into the site. - - • first order of community access= visual access • second order of community access= physical access drawing in the community requires a welcoming street face that hints to landscape experiences beyond. the main entrance and the back lane entrance have both been designed to accomplish this goal. the main entrance speaks strongly of function, legibility and access to programs. this approach is uncomplicated, with visible parking (underground and aboveground) and a shared, accessible entrance. in times of high stress, patients and visitors need this simplicity: all answers, no questions. the back lane, in contrast, appeals strongly to biophilic needs for nature and features a stronger sense of mystery. the lane winds and slopes past the "back door" (delivery) , passes along an open field and across a body of water. passage through an orchard greets the user at either end of this rural lane. for highway users, a glimpse into the southern "back yard" orchard provides a sense of place. those approaching west along marshall are greeted by an open door that pulls them into the shared main entrance. figure - : primary community arrival to all hospital programs (view south from marshall road). easy wayfinding yet references of natural resources beyond. the following section highlights two specific and important interventions made on the site: grading (figure - ) and vegetation retention (figure - ). these actions are illustrated using the master plan. - - menno home and h o s p i t a l •canada h i g ^ t ( f i g u r e - m a s t e r p l a n w i t h p r o p o s e d c h a n g e s t o g r a d i n g . . m a s t e r p l a n : s p e c i f i c s . . . s i t e g r a d i n g . key: solid line refers to proposed grade changes . dashed line refers to existing grade changes . **altered grades all meet up with existing grades at edge of property line, with the exception of the enhanced herm. it is assumed that sound protection would also be built for may fair home & hospital. a decision was made following site analysis to let current topographical conditions guide the design for the new hospital and landscape. the low point was identified and chosen as an appropriate locale for water location. the elevated knoll, considered a regional landmark, was chosen for retention and enhancement. ensuring the survival of this mature, second- growth stand of douglas fir trees presented a particular challenge for siting and grading. the final design features two significant open spaces: the central treed area ("hugged" by built form) and the large southern open area. bordered on all sides by hospital facilities and/or constructed berm, this open space becomes a large cloistered and sheltered "garden". as becomes more evident in cross- sections (in next chapter), there is a major drop from the hospital floor elevation to the southeastern portion of the site. this drop enabled the creation of a restorative waterfall and water body at the base of the cafe (cafeteria). despite this drop of nearly metres from the knoll apex to the low point, it was possible to grade paths < % and achieve universal accessibility. - - menno home & hospital r±*h»*y (ez^^ figure - master plan with details of retained vegetation. a s i t e - s p e c i f i c approach was u s e d and efforts were made to begin with available r e s o u r c e s , enhance where possible and protect where required. efforts were made to bring new design together with e x i s t i n g features in a h a r m o n i o u s manner that would promote restoration. . in order to maintain views to meeting baker, this corner will require maintenance to keep vegetation at suitable height. . berm enhancement will require removal of current vegetation. as much as possible, these trees will be replaced after raising the berm. . little ^pockets' of existing native trees within the orchard plantings may develop into private, special landmarks. . the southwest portion of the berm does not need to be raised, but vegetation should be enhanced (noise protection/sense of enclosure) . . the highway berm currently has a good balance of open and closed areas and should be monitored to ensure views to southern farms are not blocked. . adjacent homes and parks feature several mature native and exotic trees that should be protected to maintain a respectful transition between the large hospital and its humble surroundings. . master plan: specifics. . . vegetation retention. key: areas/trees marked with an x and colored green (medium grey in b&w copies) indicate retention of existing vegetation. a prime objective that followed site analysis was the retention of as many mature trees on site as possible. this is for several reasons, such as: * respect for history and evolution of site, * economic benefits (dollars saved by reducing need to buy mature trees, reduced cost of tree removal), * immediate restorative benefits derived from having mature trees already on-site in view of hospital users. notes. . the majority of healthy trees in the central knoll are retained. this space becomes a vital restorative resource for users. . remnants of an old hazelnut orchard are retained amidst an old field that has both important habitat and restorative value. . mature douglas fir trees currently line the northern side of marshall road and are retained. these trees help to reduce the height and mass of proposed buildings. . a stand of douglas fir at proposed new "back door" entrance creates a landmark and enhances wayfinding. . currently a sparsely vegetated area, this open space becomes prime location for open pasture, as well as stormwater retention (water flows to southeastern corner of site). . existing tall stand of douglas fir frames view of mayfair residents into open space. - - summary. the task of satisfying both restorative and functional requirements, while attempting to adhere to a strong landscape ethic that respects the humble origins of a place and tries to build upon rather than build over is a challenging procedure. from a functional point of view, this design, as it progressed, was constantly cross-checked with needs of emergency vehicles, stressed emergency arrivals, and harried staff members. legible circulation and a simple building configuration were required for all main entrances and major nodes of activity. sustainable practices were employed where possible, and, in fact, the desire to enhance biodiversity played a significant role in determining what open space was most valuable for retention. site analysis and consideration of varied user needs played strongly in determination of open space and built layout, configuration, and programming. programs inside and outside the hospital rely strongly on one another. for example, if it were not possible to place the intensive/cardiac care units on the southern tower with views to the open space, then a new viewshed will be required. the configuration of the buildings and the open space, in this broad plan, while satisfying several other stated objectives, allows for the retention of a large portion of the central douglas fir knoll. several other important or potentially important habitat areas are also protected (old fields, large open pasture, healthy hedgerow of mature douglas fir on the eastern border) . neighbors (both single-family homes and senior's facilities) have been considered as evidenced by the gradated height of the hospital and the facilitated access points. by proposing a management plan that seeks to involve the community in the construction and maintenance of the open space programs, (and, ideally, with fundraising for smaller gardens) should enhance the feasibility of many of these proposed programs. designed with, in essence, a large public park and an accessible outdoor/indoor cafeteria, the "complex is a place for both the sick and the healthy. it can be an integral part of everyday life, not just an emergency destination" (pearson, ). 's.* t- - +, s figure - : rough worksheets used on-site and in studio helped form the design process. - . u r b a n e n t r a n c e : shared h o s p i t a l open space. j= >s figure - : axon "cutaway" view of main entrance atrium. immediate views to inner woodlot and to visitor seating areas. ±•• axonimetric : bui form facili+ates views to /nature olam emrance ^ hospital fbt-ts-fl description. a welcoming urban street face at gladwin and marshall is proposed. an entrance street ( lanes for passage, for parking) becomes a defined volume of space that also acts as a waiting area, staff break area, and public visit area. all three hospital programs are accessed from this area. the orientation of buildings will enable sunny experiences. glass atriums at building fronts allow visual access to gardens and landscapes beyond. restorative benefits. stress for new arrivals is reduced by the easy wayfinding provided with a single, shared entrance for all users. stress is also reduced by providing easy physical and visual access into the hospital and through to the woodlot open space behind. a wide band of planting in front of the wellness centre will feature a bermed grassy seating area with canopy trees. in summer, users may choose to lay under the trees. in winter, they will use the covered benches set metres apart in this high use area. the entire area is graded for accessibility without the use of ramps or stairs. as this space sits adjacent to the wellness centre, evening and weekend use will be expected (courses, lectures, workshops, indoor recreation). a sense of security is provided through good upkeep, good lighting and wayfinding, and clear visual paths (refer to cpted appendix ii) . users. this is the primary entrance for all new arrivals to all hospital programs (patients, staff, and the public) . key figure - : location of shared entrance. maintenance. the design includes pavers, planters, benches, lighting, and simple planting schemes. the goal will be to achieve low maintenance requirements through simplicity in design and patterns and site fixtures. special features. entrance to the main hospital features arrival at an indoor "living landscape". inner offices and clinics will face onto this indoor cloister garden. easy visual and physical connections are made to pavilion-style hallways and to central woodlot area. figure - : detail of shared entrance street plan. on-street parking and easy access to underground parking as well as turnaround will reduce stress of arrivals. chapter viii the restorative vision: details and specialized spaces design and program discussion to this point has focused primarily on large-scale interventions and the choices behind them. the overall site layout has been described (through text and visuals) as one that is holistically restorative to the widest range of users. the valley health centre, as proposed, is welcoming to the community and offers a variety of spaces, large and small, for staff, patients, and visitors to seek stress reducing activities. this chapter will deal primarily with the close-up look at several of those spaces, with descriptions and original drawings that aim to illustrate how the application of restorative design principles can create a landscape that promotes wellness and reduces stress. individual spaces for users with unique needs will be explored in more detail. it is expected, however, that many more of these unique spaces would be required. the spaces provided here are designed to act as precedents for future spaces, and as motivators for the imagination. the absence of strong research into the design needs and requirements of special populations requires the designer to simply learn as much about that group as possible, envision oneself in his/her place and imagine what you would require...or what you would wish for. the spaces are outlined as they were presented in the preceding section, according to intended users and intended management of the space. each space is described briefly, followed by a summary of restorative benefits, the intended users, and special maintenance needs, if any. - - m « h ~-^m—..—~ - • in i • * - . ! • • . . . tj d j [j g q n d a aj o d d a q djj.jl rs a o o o o g o [fa i _—_*— — . — — ^ - j p . c o m m u n i t y c a f e : s h a r e d h o s p i t a l open s p a c e »,iiwati> ^ - w ^ ^ f l j p - ^ - * i : b c o secfioa-elavalion : view ntst of enhanced term ^nd dortf+rucied mars n . figure - : view (west) towards community cafe and open space program. stewardship society staging centre and marsh lookout are visible. cafe hidden behind simple concrete bridge traversing water body. restorative benefits. social support is stressed in this design and program. also facilitated are: physical and visual access to nature (including proximity to moving water), accessibility to wide number of people, and enclosure in the living landscape. users. all users: patients, staff, and public. pet therapy will be encouraged in outdoor plaza. maintenance. maintenance should be minimal and will be the responsibility of hospital staff. the design is kept simple to orient views outward. movable seating will require maintenance (left out rain and shine), as will the water feature and simple planters. the area is purposely designed open and flexible. this will enable the space to be configured for use by various groups for parties, rehabilitation or teaching sessions, or just simply for sitting and visiting. special features. the cafe is designed to draw in members of the community and is therefore easily accessed by hospital users as well as by the public (via the back lane) . views to the enclosed open space will be a primary feature. figure - : location cafe. description. this is a sunny, accessible open plaza at the southern base of the patient tower. it connects to a ground floor cafeteria, as well as a modified "food court". private enterprise will be encouraged (snack shop, coffee shop, etc.) the cafe will be an open plaza that encourages eating, meeting, t a l k i n g , a n d people/habitat/animal watching. the plaza itself features a large water feature at a height of metre, suitable for resting beside and touching the water. at the foot of the cafe is a -metre waterfall that drops into the constructed pond and then gradually moves down into the more natural marshland in the southeastern corner. paths on either side of the waterfall are graded at < % to allow wheelchair access. handrails will also be required. the plaza has views to the marshland (and footbridge that passes over water to lookout shelter)and to the hospital volunteer garden shed. paths lead out from the plaza to the marsh, orchards and raspberry fields. although there are open views to the water and pasture, the area will have a protective sense of enclosure created by the tower, berm, and trees. - - urban woodlot: description. a significant amount of the mature, second growth douglas fir at the centre of the site has been retained and is hugged by the built form. the main hospital buildings wrap around the woodlot edge, thereby maximizing views to the trees for all users of the hospital. trails are graded within the woodlot to allow universal use with frequent small nodes supplied with seating and water features (fountains for dogs, humans and birds) . restorative benefits. the forest has multiple benefits: promotion of biodiversity, experiential, and recreational. this area will provide lookout habitat for raptors overlooking the adjacent pasture as well as nesting and forage for a variety of species. the trees give a strong sense of regional identity. at the heart of this "urban woodlot" is a small clearing and rustic shelter that serves as an "away" place (meditation, refuge, grieving, small ceremonies). this forest clearing is intended for no more than people in order to retain the strong sense of shelter and enclosure. users. all users will benefit from views to the forest and edge experiences. public, outpatient programs, visitors, and certain patients (e.g. psychiatric) will make use of internal trails. staff may use internal trails as a means of arrival/exit from site. nurses leaving after day shift (catching bus on marshall) may choose to leave in groups via the forest as a way to discard the day's stress (security issues) . maintenance. maintenance and monitoring of trails will be the responsibility of the proposed volunteer group. simple forest trails will be made accessible year round using packed gravel. edge plantings of shrubs may require pruning to keep open ground plane views into the forest. security measures will include: • emergency call boxes be placed along trails, • lighting of one major path, • security personnel present during shift change/peak use. space within a space: the forest cloister. description. the inner edge between the building and the woodlot will be a shady site with significant exposure to nature. a metre wide strip serves functionally as fire access and has the added benefit of providing spaces for visitors (and others) to wait. the main hospital entrance and corridor link provides visual cues to the presence of these gardens. access to woodlot trails is apparent at each node. restorative benefits. the experience provided in these spaces will be complete immersion in nature. the built form protectively at one's back, views and thoughts are oriented into the woodlot. edge planting will be primarily native (no exotic invasives) with punctuations of color and fragrance: choisya, philadelphus, rhododenron. forest edge bulb plantings will mark changes in season. a woodland garden planting strategy for the forest edge (a variety of canopy heights) and a liberal use of acer circinatum will help provide bird habitat, thereby introducing restorative sights and sounds. figure - (above): multi-faith congregation centre in centre of woodlot. accessed by following one of several looped trails, this rustic space with little more than benches and a minimal overhead will be available to all persons or groups of persons in need of respite. programs may be promoted/developed in association with pastoral care. . urban woodlot: shared hospital open space figure - (left & right) : collages of native plants. a native palette will be encouraged in the forest and on the forest edge to enhance biodiversity and promote education about local, native plantings. occasional fragrant or unique exotics may be introduced for special places/occasions. invasive exotics will be kept in check. • • • • » • - v * t i t ' * / m *tjr hj •~jr i ' / t ft ' -» jrm ! "> mm •** •el " • f v . -a/ob f l h u <r^ jt\k. ••"••lby * * •*»• . bk mil • t k. ' o s ' '*• • ' - iff ' • iflr t • * • • $ €li * ^ ' st* i , ~- • a | mmf #'* * ^ ^ ^ • l ' * — -^ ' yl m. ^ l n anhi •> "v* * f'* ^ * » ' • . f ) • r" '/•• «./,!• n » f m r ^ * # | | • l f ih _j-,. urban woodlot.,..(' figure - : location woodlot. - - j - zj n j potential for walking route thai corrects to nearby recreation potenti^ot^^^ figure - : location paths. routeconne^o alol^^ : . ; ; - — ' " , • " - - • • • - - _ . . . _ _ way i an effort was made to maximize access to all parts of the site, leaving only the lower reaches of the marsh off-limits for birds to flourish unimpeded. the paths are made of a variety of textures to give interest yet accessibility: recycled asphalt or crushed gravel or grasscrete. areas of grasscrete are planted with appropriate groundcovers (sweet woodruff in shady forest areas, turf in sunny areas) . all paths lead out from the hospital core. the diversity of materials/surfaces can also be utilized in hospital programs aimed at rehabilitation. for example, patients recovering from strokes (with impaired mobility and possible dependence on wheelchairs or devices) must learn to handle a variety of surfaces. restorative benefits. all paths offer strong connections to nature. balance of understanding to mystery alters from trail to trail, allowing patients to choose level of security or complexity. all paths can be left behind if patients prefer to wander in the orchard, pasture or forest. it should be noted that an emphasis was placed on paths that are linear and formal, yet natural. orchards, rows of raspberries, community garden plots, and other such paths offer a sense of order within the chaos experienced by patients and visitors of hospitals. choices are present yet uncomplicated. wayfinding is facilitated. a variety of rest stops should be built every - m and made of natural, familiar content and material. simple wood benches are planned. users. public, staff, and all patients can use these loops. psychiatric patients in particular were in mind with this design. along these trails, public art may be featured but should only be of a natural content, keeping stress and misinterpretation to a minimum (ulrich, ) . looping and redundancy of trails is featured not only for safety measures but to allow staff members to mark off certain loops as appropriate distances to walk/run during break times. maintenance. path upkeep should be enough to maintain accessibility yet allow natural weathering. raking gravel, replenishing gravel or groundcovers, clearing snow, and raking leaves will be among the tasks taken on by the volunteer group. any major upkeep requirements (e.g. repairing broken pavers or clearing hazardous trees) will fall to the hospital. in selected areas, path side plantings will need pruning to maintain clear visual access for safety purposes. all paths will feature automatic dusk lighting on -hour timers. engineering will have the potential to turn on lighting at any hour, however, in case of emergency. emergency call boxes will be placed at locations along the paths. gates may be required to close off paths after nightfall. maintenance by hospital staff of these features will be required. focus : designing for function creates restorative opportunities . several areas that required vehicular access utilized materials that would also provide more natural settings for walking. for example, a special opportunity for a pathway arose in the design for fire access to the north building face. this grasscrete turnaround also serves as a walking loop for psychiatric patients. the need to provide -metre access around the buildings for fire access also provided opportunities to enable outdoor access by all patients (wheelchairs, bed-patients) as well as frequent visitor and staff nodes. these areas will be highlighted later in this chapter. figure - : grass crete. functional with a more natural appearance. . accessible walking loops : co-managed open space (also staff/visitor/patient open space). description. these (and many more) pathways have been designed for maximum accessibility, control, options and experiences. users are given distinct road types on the site. these are primarily the functional routes. these varied paths act as the restorative routes for walking, jogging, cycling, or simply viewing. by utilizing the regional aesthetic and propensity for growing fruit, some interesting walks through rows of trees and canes were created. a looping system was created within the woodlot to increase defensibility. the formal lines of orchards and gardens are very comforting to trek through during times of stress. straight lines are less stressful and give a sense of order to the chaos that often accompanies hospitalization. * accessible raspberry canes •year-round p^t-hs •even q n a d e s •plan s <l.sm haiqut figure - : accessible raspberry walks : unconventional, ''regional' pathways. - - examples of designed accessible walking loops " ' . r mm conceptual ske+ck • harsh uta\k figure - : conceptual walkway past marsh. :-.-(m.v- i •• i > • gsncepiual skefch • raspberry cane walk figure - : conceptual walkway, rows of raspberry canes & community gardens. conceptual sketch ; orchard wa! fc figure - : conceptual walkway down orchard rows. t&p% %. ' < ; . >s ml • ** i m <i i , > ' . k ! , /. v ^ coniferous siand v f l | ^ f v i k ;x^~^]% y ^ x mixed trepstead c/*f v flay. '-i ^ & a : y i sk °v \ ii a, c . \ t^-m. iso shared open space fcspital wo«/w - h a n d e d by hosfsiid-qaf« a s rcquird fetks ophoas f«- difficufiy / r j n ^ < % f ft^l hinimiil efferf always & choice. * kesi sfops a+ f>«l-|\ ^ n v e r q e r ^ e s s£a i'n^, wi+er, trt»er<je»^u call o«!s figure - : woodlot t r a i l s and rest stops . . . . research findings supporting walking programs for mental and physical health: an overview: . women and cognitive function. in this study, , women (age and older) were tested for cognitive function at year intervals. researchers found that for every mile walked per week there was a percent less chance of cognitive decline (yaffe, ) . "women who walk regularly are less likely to experience the memory loss and other declines in mental function that can come with aging. this is an important intervention that all of us can do and it could have huge implications in preventing cognitive decline" (yaffee, ). . prevention of diabetes. this trial showed an impressive reduction in the development of diabetes following regular physical activity. moderate-intensity physical activity (walking to jogging) was found to be associated with a one- third to two-thirds lower incidence of niddm (non-insulin dependent diabetes) over to years in persons at high risk for the disease (e.g. family history). it was concluded that public health programs aimed at increasing opportunities for physical activity before illness would be a beneficial investment for communities (clark, ). . treatment of depressive mental illness. an nih (national institute of health) supported study at duke university in made headlines when it was discovered that patients who took brisk -minute - - walks or jogs three times a week recovered from major depression almost as well as those on anti-depressant medication ( % vs. %) . perhaps even more significant, when the original patients were tested again months later, only % of the exercise group (who continued their exercise) had a return of symptoms. the drug group had a relapse rate of % (blumenthal, ) . . exercise as a singular treatment for mental illness . the national institute of mental health recognizes exercise as a valid treatment for anxiety and depression. early clinical trial evidence also suggests that regular exercise may be useful as a singular treatment for some anxiety disorders, for individuals suffering from body image disturbance, and for the reduction of problem behavior of developmentally disabled persons, as well as an adjunct in the treatment programs for schizophrenia, conversion disorder, and alcohol dependence (wattles, ). facilitating walking/exercise programs : summary remarks . shoulder strap electrode monitor figure - : holter monitor: the patient wears a small monitor with electrodes attached to the chest. this allows continuous monitoring of cardiac activity at rest and during physical activity. . walking programs for heart health. the healthy heart program at st. paul's hospital in vancouver, british columbia is renowned for its work in both the prevention and treatment of all manners of heart disease. a significant aspect of their patient program is the initiation of an exercise program suitable for each individual, beginning with simple treadmill walks and progressing from there. since physical inactivity is the most prevalent modifiable risk factor for heart disease, increasing physical activity or "active living" is a major goal for participants in the healthy heart program (healthy heart program, ) . "physical inactivity lack of physical activity is a risk factor for coronary heart disease. regular aerobic exercise plays a significant role in preventing heart and blood vessel disease. even modest levels of low-intensity physical activity are beneficial if done regularly and long term. exercise can help control blood cholesterol, diabetes and obesity as well as help to lower blood pressure "(healthy heart program, ) . . reduce risk of cancer development. women who are active reduce their risk of cancer by % vs . sedentary counterparts . this is similar to the lean women who exercise reduced their risk of breast cancer incidence by % compared to sedentary counterparts. this study supports the work done by university of southern california and university of norway that states that physical activity can reduce breast cancer incidence from - % in the groups of women studied. "participation in recreational physical activity in any period of life, rather than during a specific period, appears to be relevant, implying that women who start with recreational physical activity at later ages may still benefit from their efforts (verloop et al, ) . . relieve symptoms of arthritis. the recommended and often standard treatment for forms of rheumatoid arthritis include such harsh medications as methotrexate, an antimetabolite often used in the treatment of cancer (e.g. chemotherapy). it has been shown to be successful, but not without harsh side effects. as a personal and entirely anecdotal endorsement of walking/jogging/running, my own battle with a rare form of hereditary arthritis began before i had my th birthday. the rheumatologist gave me several options, including the above drug therapy. frightened by the prospect of receiving "chemotherapy", i chose one of his other "alternative" options: vigorous exercise. by taking up running (marathon running) and attempting to decrease stress in my life, i have managed to ward off the worst of the illness. i occasionally have opportunity to speak with others with similar genetic conditions: men and women, many younger than i, often disabled and unable to work/study/play or enjoy life. i am a strong advocate of regular and vigorous exercise (the actual amount dictated by the body's pain response). perhaps the most significant barrier, according to patients, is the lack of facilities where they can begin a program (walking, swimming, etc.) and feel comfortable about the pace at which they must begin. a strong recommendation by the mayo clinic for all forms of arthritis, but in particular inflammatory and rheumatoid forms is to "...exercise to strengthen muscles around joints, increase your range of motion and increase your overall fitness" (mayo clinic, ) . . exercise as a cost-efficient treatment. perhaps most significant in a public health care system, the treatment of mental health with exercise and activity has been shown to be far more cost-effective than the standard drug therapy treatment (greist, ) . the valley health centre has great potential to create activity options for all members of the community. beginning (and maintaining) physical exercise to prevent and control illness is not as simple as just 'going out for a w a l k ' . g u i d a n c e b y rheumatologists, cardiologists, physiotherapists and other health care professionals (dependent on illness being treated) is needed. taking steps to prevent the development and/or progression of illnesses will not only prove cost efficient in the long term but will go far in improving the general health, well-being, and happiness of the community at large. - - figure - (above) : photoshop visualization. moving along accessible raspberry cane paths (grass crete surface in selected pathways; height restriction on raspberry canes). figure - (below): photoshop visualization. moving along pathways through 'old fields'/'old orchards' (some present on site, others to be designed). surfaces will be year-round: range of materials, (e.g. asphalt, coarse gravel, concrete in areas near buildings). mh o | fil v m c u r l -> n • h h (d w •h > u. xi - n c p i c r - l <r> u p tn • h uh ( •i m o h a m o m p, (d o - a •h \ .a m i p o m £ - o> l-l - h ( ) i w o co a) m ><; w . > i • h h •rh ja - h co t o a) o o rd h " h ( o r h < ) ( ) a n <h > i t ) (a :« • c - ( o , ai • n m m m — ( i - r h i h •h o a s o j~, l/l > a) x! d > - l £ i to a> •-- a • { j s-i t d t n g -h - x ! • h r h rl - rrl o., photoshop pathways. visualizations of figure - (pictured below) : photoshop visualization. hand- rendered image of community stewardship staging centre (shown as simple rendering in figure - ). in this image, life has been brought into the centre through the addition of site-specific photography, animals, signage, people, and possible programs. for instance, depending on the choice of trees to be planted in the orchards, heritage apples or other fruits may be marketed to hospital staff, visitors, and patients and the community at large. the centre is designed to have a welcoming, accessible feel that caters to all persons, regardless of ability or health stages. free-roaming rescue animals may become a part of the open space program (important restorative and altruism benefits) . - - figure - : location primary psychiatry programs/designs. ; n ^ ~ ^ b . .- outdoor "p*ro turnaround/ walmng pwlmatw / walking loop" prospect-refuge i < >: "::l---aa«« figure - : outdoor psychiatry connections - paths (a) and node: (b) . arrows to open space programs/potential programs. garden •/,• -" ' ^ o • design/program objectives (for inpatient-psychiatry unit) : . access to open space programs and walking programs is facilitated and controlled by staff according to patient restrictions. in particular, access to the nearby woodlot, old field and new orchard will become a component of patient treatment. as patients are given higher levels of independence, access to these areas should increase. although the unit is on the fourth floor, elevator access will provide easy wayfinding to exits and entrances with necessary signage to direct patients to programs. it is expected that patients will likely be introduced to the various programs as a component of their treatment plan. it should also be noted that attention to security should be high, with target hardening where applicable. . access to the cafe (a place to take coffee, smoke, people-watch, or socialize) is also facilitated by elevator routes. a controlled elevator from the fourth to the first floor will offer a direct route to the cafe. this will be an important place for social support. . a walking circle/area is designed within visual access of caregivers. the fire access 'turnaround' doubles as a walking circle, and a grasscrete surface permits use year round while maintaining a natural feel. as well, a portion of the nearby 'old field' bordering the woodlot will be fenced off (preferably with hedgerows) to give a safe "inner sanctum" for patients to wander in nature. the size and extent of this area would require further analysis. . exterior views to nature are promoted, in particular from: a. the shared "day room" (lounge), and b. locked rooms, where patients admitted against their will under the provincial mental health act are kept for a limited time if deemed necessary for staff or patient safety. patients in these situations are often suicidal and/or homicidal and strong efforts to reduce stress are needed. routinely, this extends only to painting walls in muted colors. this plan proposes opening up views (through safe, unbreakable glass) to the forest and pasture beyond. . a visible smoking nook is built (visible to caregivers and patients on ward) into the design. a high percentage of psychiatric patients are smokers and stress may be reduced if they can visualize a place where this activity is permitted. these nooks are designed in a very similar manner to those illustrated later on as 'visitor open space' . . access to prospect-refuge is facilitated by proximity to the woodlot and to private areas in the old field. the topography of this portion of the hospital allows patients to sit on a hillside and view activity on marshall road below. access into the woodlot will be determined according to patient restrictions. a unique, and likely popular location will be the area overlooking the hospital delivery bay. the inner fire lane provides quick and easy access to the upper balcony overlooking this 'back door'. despite the seemingly unaesthetic appeal of "delivery areas" , these are traditionally well used by both hospital staff and patients as refuges for escape. . psychiatric population: challenge for programming and design this new hospital serving the fraser valley of british columbia is expected to care for a large number of patients suffering from a variety of mental illnesses. special attention is required in both design and programming. this project attempts to point out the urgency of including this often forgotten group in early stages of design. drawing from conversations with other health care professionals, as well as the designer's own personal experience with this patient population, these main objectives for design have been delineated: . access to open space programs , . access to the cafe, . a walking circle/area, . exterior views to nature, . a visible smoking nook, . access to prospect-refuge. outdoor programs fourth floor cancer clinic counselling and treatment offices: traditional and alternative nursing units * > (psychiatry: views and balcony) elevator palliative care (balcony garden) nursing units indoor & outdoor cafe outdoor programs figure - : focus on p s y c h i a t r y placement i n b u i l t program ( e l e v a t o r a c c e s s t o programs) . - - anecdote (a call for a defined walking route) . . . working on a secured psychiatric facility in an urban core, i was assignee the task of accompanying a large man ( lbs of muscle developed through fits of rage) on a supervised walk pass. patients who had showr. improvement were given these passes. i knew little of his history...we all knew little. he had been very closed mouthed since admission. as we set ofi down a back alley, i tried in vain to find a route that would be interesting, yet defensible for me. this became more of a concern as his xlife story' began to unfold with multiple arrests for violent crimes. as we walked down alleys lined with -foot high fences i could see him becoming vuch more relaxed and more free with his "tales". my own stress levels were, however, soaring. we returned without incident. the psychiatrist was thrilled with this new discovery of "walk & talk". the first thing i did? i got in the car anc vapped out a safe, secure walking route that would reduce his stress yet keep mine under control. that "secure" walking route became the standarc for all walk passes. the need f o r f l e x i b i l i t y . a l t h o u g h t h e r e i s a d e f i n e d " p s y c h i a t r i c u n i t ' , p a t i e n t s s u f f e r i n g from m e n t a l i l l n e s s a r e f o u n d t h r o u g h o u t t h e h o s p i t a l . women w i t h p o s t - p a r t u m d e p r e s s i o n a r e f o u n d i n t h e o b s t e t r i c s u n i t s . a n o r e x i c s a r e t r e a t e d on m e d i c a l f l o o r s f o r g a s t r i c t u b e - f e e d i n g a n d i n ccu/icu f o r l i f e - t h r e a t e n i n g e l e c t r o l y t e i m b a l a n c e s . p e r s o n s w i t h m e n t a l i l l n e s s a r e o f t e n v i c t i m s o f a s s a u l t a n d r e q u i r e s u r g i c a l t r e a t m e n t . n o n - c o m p l i a n c e w i t h m e d i c a t i o n s , p o v e r t y , p o o r n u t r i t i o n , a n d a h i g h p r e v a l e n c e of s u b s t a n c e a b u s e l e a v e s many o p e n t o a h o s t of m e d i c a l c o m p l i c a t i o n s . l i k e t h e c a r e g i v e r , t h e d e s i g n e r m u s t b e p r e p a r e d f o r e v e r y e v e n t u a l i t y . d e s i g n s a n d p r o g r a m s t h r o u g h o u t t h e h o s p i t a l m u s t b e f l e x i b l e a n d a c c o m m o d a t i n g . fire access and walkjncj uop da.y room close obs. locked security r_ consider open atria/sky roofs to maximize sunlight -zbo psychiatry sitinq m a i figure - : detail plan of psychiatric siting (indoor-outdoor relationship evident). figure - : "back door privacy". an option to retreat to area above loading dock for solace and some degree of prospect-refuge. research highlight: schizophrenia £ smoking behaviour. patients with schizophrenia have an extremely high prevalence of smoking; a us study found % of these patients were smokers compared with only % in the general population (hughes, et al, ). the increase in dopamine release induced by smoking has been hypothesized as being helpful in alleviating some of the positive schizophrenic symptoms (delusions, hallucinations, paranoia etc.). therefore, schizophrenics may smoke in an attempt to self medicate (hughes, et al, ). smoking also interacts with neuroleptic treatment (common drug treatment for schizophrenics, includes the drugs haloperidol anc chlorpromazine). neuroleptic plasma levels are reduced causing higher doses to be prescribed and subsequently, leading to higher incidence of side effects (goff, et al, ). one study actually showed that patients smoke more when treated with the neuroleptic haloperidol than during a medication-free stat (mcevoy, et al, ) . the argument could be made that until medical science discovers a more effective treatment for the disease, smoking may be an unfortunate but inevitable side effect. for some this may seen contrary to design a health care facility that enables smoking. for this designer, it is merely an attempt to design for all user needs, the dilemma of designing for smoking. this project may receive criticism for actively designing spaces for people, and in particular patients, to smoke cigarettes. medical science has not yet adequately developed a fool-proof cure for this addictive habit, and it is the objective of this project to provide for, and design for the needs of the clients. patients suffering from mental illness are at particular risk for this form of substance abuse. while provincial rules dictate no smoking indoors, the design does feature several areas suitable for smoking. a very brief overview of medical research that supports this design move is offered here. - - u n i q u e . d e s i g n i m p l / c a f i o n s : « se.nst+ 'vily ro u-v if'qm - sh td> qards.n , 'tmp^rea sfon i n k q r i i y - consider fabric scarmq ^c£es to wla+tf,. "touchable' planfinqs figure - : section-elevation of cancer clinic woodlot garden (view north) . it should be noted that the design of a shady woodland garden for the cancer clinic does not imply that only sedate and sorrowful programs will occur here. celebrations and gatherings can take place in the forest clearing. during the day, hikers or cyclists may pass through the rest area and visit. pet therapy should be strongly encouraged, to the point of having a resident pet. . : c a n c e r c l i n i c w o o d l o t g a r d e n : p a t i e n t open s p a c e description. this garden utilizes the power of the shady treed landscape. it is built primarily for the patient (and loved ones) . a roof deck emerges from the second floor of the building and offers an accessible route to an elevated position on the centre knoll. the garden area is in fact a small clearing in the woods that offers a water feature and simple site furniture. restorative benefits. users of this private garden space have the potential for: • sensitivity to ultraviolet rays, • impaired skin integrity, • heightened feelings of helplessness/hopelessness, and a • strong sense of loss of control. offering these patients (and the staff who care for them) a space enclosed by the healing power of nature is vital. this is a shady garden protected from wind. rain protection is given with an overhead structure on which vines are trained. waterproof, fabric chairs will be comfortable to sensitive skin.. situated on the edge of the urban woodlot, this figure - : location of cancer clinic garden design. r , - - ppraac ca\ sifatnicktion at\ new futlvcpidcvto invasws exofics usi. ciisti'n^ n t falchfi acer cffcinatum cornvs ,-jutfai.'f'f rnod'odendron matrophy/'um kibts sarujuine-um vittiwium parfipofiu.^ rubus sotcrahi'is gauhktria shalfan poiysfichufti munrium asarum caudafum ilaianthemum difatetura comas canadensis mar f -•'; x fs in deck $ creie • -f^f^ff^^lffa^^^^w 'doacriffi - alccka cjuina+s on : /erh&sfs w ± : . h ? a l i e n t open space. •• cancer clinic 'wooduof garden' figure - : d e t a i l - g e n e r a l p l a n t i n g scheme f o r cancer woodlot garden. immediate views a r e a v a i l a b l e t o i n n e r woodlot and t o v i s i t o r s e a t i n g a r e a s . g a r d e n w i l l a l s o o f f e r s t h e c h o i c e of " e s c a p i n g " , t h e r e b y r e g a i n i n g some c o n t r o l . a d d i t i o n a l l y : • p l a n t s w i t h p l e a s i n g f r a g r a n c e s and t e x t u r e s w i l l b e u s e d ; • e m p h a s i s on g r e e n / b l u e / w h i t e i n c o l o r p a l e t t e ( s o o t h i n g a n d p e a c e f u l c o l o r s ) ; • a w o o d l a n d g a r d e n a p p r o a c h w i l l be u s e d t o e n h a n c e b i r d / h a b i t a t a t t r a c t i o n ; • p e a c e f u l s o u n d s w i l l b e i n c o r p o r a t e d t h r o u g h a s m a l l w a t e r f o u n t a i n . u s e r s . unique: cancer clinic patients, visitors and staff. encouragement of pet therapy will require special features for visiting pets (e.g. drinking fountains) . maintenance. this space will require a higher level of maintenance by hospital gardeners due to the small size and need for finer attention to detail. deck and bridge maintenance will be required, particularly in winter seasons. the deck and bridge will be of concrete construction with wood and cast iron details. • - elevator bank, it will be available for long or short breaks. the design will be minimal so as not to distract from the surroundings. a permanent podium may be constructed to allow the space to be used for awards and ceremonies (private or public). restorative benefits stress reduction is offered through contact with nature and escape (from work and from patients). significantly these gardens are places where staff are not accountable to the public and can momentarily let down their defenses. a sense of control is imparted to users. more so in the rooftop garden, a strong sense of away is made available to the user. users e.r. refuge: emergency staff, night shift staff and ambulance/police/security personnel will be the primary users. patients are not given visual or physical access to this space. mt. baker retreat: this area is restricted to staff except for special occasions. a wide array of staff will be expected to use this garden. maintenance hospital gardener maintenance will be required although staff may take on these relatively small gardens as their own project (as long as the space and budget for plants and materials is provided) . sun- (west views and access to main tnky a j . , - " " ^ " l r~> to du^noslics (ease a w^tmdtha i~|- corrtroiled eteydior-access +o or/icu/ecu/wards v j l rooms / , | t r i i d t ! ' i off.cus ~~mkm s+iff, s-faff hirfuae ?-^r o <? \ <> < > < kessffict&d eft par ! ! ! i j — i * , — i j - ^ w ^ «^ n' u s ^ f f /fire.— .•—-^£>=facji back yara orchard de-taih emergency i iso nt -ua conceptual ?kh> shfi r t f ^ e n -t ' mouivf- 'saifer roof bsrkrs figure - (above) : detail plan of mt baker staff retreat. figure - (left): plan of emergency entrance (with interior connections). figure - (below) : location of proposed staff refuges. l z j j • l j f ' : • • • - . i v j v m t . baker / \ r f refuai \ r f refuge e.r. - <£\ ^ staff v > - ::'v refuge « « j £ . v _ '- . s t a f f refuges: open space staff two gardens are featured here. it is expected, however, that several more would be included in the final plan. description a. emergency room staff refuge this a small but vital garden space created within a nook of the built form outside emergency. enclosed by plantings, it will be a means of quick and brief immersion in nature for stress reduction and retreat and refuge. the proximity of the garden to the e.r. allows this space to be used frequently for brief periods of time throughout the shift. the garden provides a view of emergency health service (e.g. paramedics) arrivals. this visual access will be particularly important on night shifts. this garden space will likely be shared by a range of professionals, as the er is often the gathering point for several public professions. a card- controlled access from the outside keeps the place safe from non- intended users. the inner entrance leads directly into the staff lounge. b. mount baker visual retreat situated atop the -storey tower, and facing south, this space focuses on the views outwards. views to regional landmarks are maximized from this point (mt. baker and southern rural lands). as well, a significant view of the open space program is facilitated, and the height is low enough to prevent complete removal from the sense of enclosure. perhaps in reaction to the lack of attention staff have been given in modern design of hospitals, this group of users have been afforded this choice garden spot for refuge. easily accessed by a central • - file:///r f file:///r f . * , : * . : . » * * , > . . • . s'card , . thvnan stale overheads occsss a ts heifer of ie.cn¥£$ •' **qwfcfc * t - j - " . , f rvcr:"' • »rpx«"mt y f o er / r figure - : elevation view towards emergency and er staff refuge garden. the garden i s in close • kitm^s r cko/jsuff \ ;•„ • j yfy-yfa • szfkty + rtwqe {mm ef.enfs ' s&c ion-£le,va iorv er. ta;t farfuqe l-:t> proximity to ambulance bays, allowing users to monitor incoming patients. human scale interventions. the illustration at left highlights more than just the design and location of the e.r. staff refuge. it is recommended that the built form should feature fenestration and indentations as detailed here. dropping down the occasional portion of roof top not only creates an instant roof garden (physical and/or visual access) but also helps to decrease the apparent mass of building size. multiple large windows, set low to facilitate views from beds also help break up the size and scale of the structure. creating a more human-scale and friendly appearance to the built structure will benefit all users, from immediate hospital personnel to community members passing by. for the staff member taking a brief retreat outdoors, the building will act as their backdrop from which they observe nature. a sympathetic built form will enhance the degree of stress reduction. for members of the public, viewing the hospital as an impressive, yet humanistic structure will increase chances of them coming on to the property to use the cafe or participate in volunteer or social support programs. this attempt to humanize the buildings will be e s p e c i a l l y important on this site, given the existence of single family homes and low- rise senior's f a c i l i t i e s nearby. - - http://of ie.cn grass crete plan-fed i*i h sweet woodruff ^f facilitates otterqency vehicle ( . ft", furninq r a d i u s ! shl& site fumi-rtf» t f. i'oule. used i , drr>ci . i tfe.r.idt/ rain *(lap-cor.tr sap i i . , * plan! list ; z detail plan visitor'/oufpafidnt opem spaed figure - : detail of simple visitor' s nook along inner core of hospital (by woodlot) . i. ac;"r cfvorufun (wnc fa'ip!c% :'''' e • •...•,f-:;|.'.'v,''./it. 'ffowennq .wtjad " cfwi y< tai\»ta i 'me mat* "r.i'-uje b!'"or i fleer pal fiat un\ v&t -,io;•• ; if> ( j i ; u : . ••'•.(>. i- blci linun spic-wi ("beer fern*) jrfs aw<;us --/vi ' . : w j ; j ; b'o k <'„i; um odarahim " meet ifevlruff) li wdlffonfs oricrs+if.s an/«n ruse j f i dunfur*i f , f i l a f u r r . (fiflrl-hdrn mi.cfei kiif !:£rn) is alearnvfa mjts i t , y':. h a « ^ iv, fbii.ni h i f t i ' '/ t v«" f;"rr>: larmsrvht i'!e»fvlfr j . accessible building perimeter: visitor open space & patient open space description as has been described previously, the built form is surrounded by a minimum -metre wide pathway, accessible to emergency vehicles as well as individuals on foot, in wheelchair, or in hospital beds. small indentations are placed along this pathway to demarcate special areas for rest by users. in most cases, these indentations correspond with entrances, sliding glass doors or large windows. as the visitor arrives at the front atrium, he or she is instantly cued as to the presence of a waiting area (s) within the hospital, nestled below the mature douglas fir. the designs for these spaces are all meant to be simple, with subdued planting, water features where possible and simple yet comfortable benches. a bench is always strategically placed opposite the entrance to the "waiting nook" to give evidence of human sign and increase comfort level. restorative benefits. legibility, proximity to nature, accessibility, and the presence of an enclosed, hugging 'archetypal' space are all present in this design element. jt^tj 'i | ; s n i - - ' * • • • ' • ? ! v * v ... •' '- '. ' figure - : key t o i n n e r core " v i s i t o r nooks" - - http://-cor.tr http://fbii.ni « n'oha &cc&s fane - §ww $?resf /;'ew ~or & >j twitefc&tir rsir &*!€. o~] pt/ft •pe- ; fyf f \ft access (ar\t = oqf<w open space sia-fatfe -£•. . for kecjs ^u)fieg(c/»ajrs. figure - : outdoors accessibility achieved for all users . anecdotal support of design. yas the night progressed, it was not the fact that his wife of fifty years had suffered a massive stroke that frustrated and angered him. it was not even the fact that she would clearly die that night that upset him. reconciled with the imminent passing of his beloved wife, it was the frustration that she would most assuredly die in this emergency room, in this windowless corner, in this artificial and sterile environment, that he could not suffer any longer. she had lived all her life "outside": wife of a farmer, avid gardener, caretaker of numerous rescued animals. how could she pass away without one last breath of fresh air, one last passing bird song, or one last feel of the breeze through the native maple trees? despite the fact that we were in a small emergency in a rural area, pushing that bed outside, over the curb, and next to the non-descript staff 'garden' was a challenge that required the full participation of several nurses and security guards. nevertheless, that minutes of manpower was the best nursing care plan we could have devised for the man who was about to lose his wife. she did pass away, in a corner or the emergency, later that afternoon, but for him to have spent just minutes at dawn watching the sunrise as she slept beside him in her hospital bed was enough to calm him and leave him with good memories of her final moments. why should it be so difficult to take patients outside, everyone in the department wondered?' emergency vehicle access shady garden experience users. all users will find these spaces beneficial. the highest use, however, will be by visitors, patients awaiting diagnostic tests (laboratory and ultrasound departments are also located on ground floor) and patients. in particular, this provides an easy means by which caregivers can push beds outdoors for restorative purposes as well as for emergency evacuation purposes . maintenance. upkeep will be done by hospital employees with assistance from volunteers if desired. upkeep should be low-cost as the primary goal is to keep planting schemes and design features simple, native, and low in labor. plants that grow well in shady environments will need to be employed. surfaces will need to be kept clear of debris in order to ensure easy movement of hospital beds, wheelchairs, and emergency vehicles. :f. >y* figure - : sample visitor nook-adobe photoshop visualization. site furniture. benches, artwork, water features, and other site furniture and amenities will all be of a simple and easy to maintain nature. abstract art will be avoided to reduce stress (ulrich, ). these small nooks on the inner core of the hospital may be a potential site for local artisans to be involved in creating regionally- themed benches (refer to figure - : abbotsford bench art program) . • - figure - : axonimetric of entire site showing depth of enclosure and open space. figure - : location open space programs. facilitate this. the siting of design of significant, memorable features that create landmarks, small or large will enhance this understanding. a significant tree, a bridge, a garden shelter are easily identified and recalled. at the opposite end of the spectrum, seasonal bulb plantings in the meadow beyond, or a unique display of natural stone art at water's edge may only be noticed after successive visits, yet give an equally strong sense of understanding (kaplan, kaplan and ryan, ). users all users: patients, staff, and public. maintenance m a i n t e n a n c e w i l l be t h e focus of t h e p r e v i o u s l y d i s c u s s e d h e a l i n g g a r d e n e r s ' s o c i e t y . . the open space- "pasture, pond and p r o d u c t i o n " : co-managed open space description. at the core of this open space is the pond or marsh (dependent on season and rainfall) . designed with an accessible path it provides benefit to human, aquatic, aerial and terrestrial habitat. pasture land and edible landscapes buffer the water from its built environment. the open space landscape, while skirting the hospital's southeastern edge, in fact creates a very positive, volumetric space between mayfair hospital, the new hospital, and the highway berm (condon, ). the tall douglas fir trees edging the property contribute to the human scale of the space, by furthering the sense of enclosure. small pockets of space along the meadow edge become even more human scale when the open space recesses under tree canopies . restorative benefits. visual and physical access to a living landscape will appeal to the biophilic nature in all users. creating an actual working landscape that requires human stewardship for functioning appeals to the universal need to nurture. providing opportunities for nurturing is identified as an important means of battling the helplessness and hopelessness experienced by hospital patients (beck & katcher, ) . movement into and through the open space should be filled with choices and options for varying degrees of interaction with nature. opportunities for movement that features high understanding and legibility will facilitate a strong sense of personal security (kaplan, kaplan and ryan, ). the accessible paths will facilitate this. the siting of - - chapter ix final recommendations for future inquiry or design . recommendations for proposal • public presentation at university of british columbia: april , * presentation to city of abbotsford staff: may, some of the following recommendations or follow-up ideas developed late in the design process and time simply did not permit further research/drawing or exploration. other issues were raised during the public presentation at the university of british columbia or at an informal presentation given to city of abbotsford staff. . traffic calming measures along main street entrance into hospital may be required/explored. . development of street guidelines specific to marshall road would require further inquiry into rurally appropriate street treatment. this front marshall road may also be considered for inclusion in hospital programming, as it becomes part of a "loop" around and through the hospital. issues to consider would include: • the profile of marshall and gladwin, which may require widening of the sidewalks to allow for passage of two wheelchairs; • the appropriateness of marshall for wheelchairs/disabled due to its steep grade; • whether the marshall road street treatment would include retention and enhancement of current douglas fir on both sides. keep mystery to a minimum by eliminating mid-size shrubs except at apex of knoll. appropriate understory may be planted under these large "street trees"; • the possibility of creating a running loop for staff that uses back lane and travels along marshall (one large loop). . consider the use of hazelnut trees in orchards. these trees grow very well in this climate and the hardness of the outer shell virtually eliminates the chance of a child allergic to nuts cracking open and ingesting one. the outer shells are not allergens. . consider the use of heritage apple trees in orchards. there are local growers in the abbotsford area working with highly disease resistant, heritage trees and may be interested in 'donating' trees for the hospital orchards. maintenance, research, and follow-up care would likely involve these interest - ill - groups. also, non-fruiting but flowering trees may be considered for orchards (if known to attract large numbers of birds). . guidelines for communities may be explored and developed, that ask or answer the following question: to what extent does a local community have influence on a large regional, provincially funded hospital? . the university of british columbia or other local schools may have large scale agricultural programs that require land that would be interested in joining the co-management of the open space, and donating product and time. . a defined running track with hour lighting that runs through and around the site would be useful not only for community members but also for staff. many larger regional hospitals now feature -hour gyms with treadmills where nightshift workers will spend their -minute 'breaks'. while it is expected the wellness centre will include access to treadmills, an outdoor track with an appropriate surface would be a particular treat in this mild climate. the possibility then exists to create a yearly fundraising "run for the hospital" that would cross through the hospital and around mill lake. the distances of these running routes have not been explored. . a proposal has been made for a rooftop garden that is shared by both geriatric/rehabilitation and paediatric populations. another unique feature would be a defined and designed play area for children (patients, visitors, and community) within the open space area. the long flat lawn south of the hospital and just east of the cafeteria would be an appropriate place for this design. . in the proposed plan, grassy figure - : a designed, supervised treed swales are in all parking play area for children; in plain lots. these plantings may require v i e w of hospital. enhancement in the shared parking lots to the southwest, in consideration of views from the western side of the hospital and tower. . in this proposal, the community has been considered strongly as a component of the design and the program. more specific design plans, however, would require a much more involved effort to identify very specific community groups and their needs. for example, identification of preferred types of recreation (rollerblading, equestrian, cycling, etc.) . given that this region is home to a very high and growing number of horse breeders and owners, the desire to place a small riding ring on the site may be expressed by the community as a means of increasing involvement as well as a restorative vision for hospital patients. full determination of open space programs would need community input and decision-making. - - . recycling and discard of waste is an issue to be explored within the hospital site: for compostables, paper, plastic, and biohazards. hospitals are well known to be highly wasteful. this can be blamed on the high risk of biohazard but it is also well known amongst hospital workers that little effort/budget is put into efforts at recycling. . alternate energy use may be explored on site: solar, wind, water. windmills were not explored based on cursory data that these are harmful to bird populations. this would require further investigation. . emergency health services (ehs) access from .) h binci access s . sz emergency j l ehs control! illlm , back van! brchard .'. klfi back lane emergency crossing only ^anenresiftoon,, t r a h s ^ : canada highway figure - : ehs access onto gladwin from trans- canada highway. this close proximity would have a significant impact on morbidity/mortality of highway trauma victims. trans-canada highway onto gladwin and into the hospital would be effective in decreasing ambulance transit times for major traumas. such an access point would make this hospital a primary provider of highway accident care. measures would need to be taken to ensure this does not become a "short-cut" for highway access by the general public. one possible solution may be a electronic accessible ambulances controlled gate only by . security issues related to welcoming the community onto the landscape have been mentioned briefly here. a more thorough delineation of security measures would be required. for example, while - - several walkways have been designed for use by all individuals, certain areas may require fencing or (preferably) hedgerowing. an example would be a boundary created in the north old field space for use by psychiatric patients. water features, although designed to be shallow would require safety measures (regional fencing, etc.) in high use areas. . the open space area becomes in all essence a significant public park. programming for special celebrations (cultural, regional, etc.) should be done during the design phase, beginning with the planning of a significant ribbon-cutting ceremony. special events could be celebrated here: e.g. annual strawberry/raspberry/blueberry festivals. the open space could be leased out to groups for one-day events (e.g. club picnics, obedience dog trials, etc.). . a final image/map/overlay that would be created (given more time) would be a "community integration overlay". this overlay would detail several possible community activities. these might include: • drivers passing by, • pedestrians walking by, • recreationalists cycling or jogging through, • visitors stopping at cafe for a cold drink or a latte, • children playing in defined open space near cafe, • seniors walking in open space, • celebrations going on in open space, • staff members taking lunch under an orchard tree, • community members gardening or pruning orchard trees, • community members arriving at wellness centre for talks on health promotion, disease prevention, • schoolchildren taking inventory of bird habitat in marshland. . a very few examples of roof gardens, private gardens, and water features have been chosen to illustrate in this project. as a major emphasis was on creating an entire restorative landscape for the site, time did not permit the design or even the locating of all unique spaces. it is assumed that the landscape should become filled (incrementally) over time with a variety of unique spaces that feature comfortable seating, access to water, views to nature, and the potential for interaction with other humans or with habitat. for example, pathways in the douglas fir woodlot feature a variety of rest stops that could become the focus of a local design competition to create benches and water features. . in terms of the very important water feature, the plan has laid out a main waterfall at the base of the southern cafe, a lined pool and two marshlands (one only accessible by humans, the other for habitat and maintenance stewards only). several smaller, accessible water features should become a standard part of all small places. this is detailed in some of the unique features (e.g. cancer clinic garden) detailed. . the plan of the built form also features several "indentations' that create visitor/patient spaces. while it is not detailed, the entire perimeter of the ground floor should be fitted with movable overhead shelters to enable patients to easily make their way out side in chairs, by foot, or even if pushed in bed. - - figure - (this page): examples of varied water features. preferred for greater restorative benefits are any features with moving, splashing, spraying water due to the effect of negative ions (parsons, ). . follow-up research encouraged. as has been mentioned, several assumptions were made during this project. given the author's experience in the field of health care, these assumptions were possible. for the designer not equipped with twenty years experience beside health care providers, dealing with death and illness, and facing on a regular basis the stress from all users of a hospital environment, these assumptions would be impossible. unfortunately, the research done for this project revealed very little in the way of evidence-based testing of preferences (in particular, of staff and visitors) . research was rare in terms of specific needs for all groups in terms of needs or wants in the way of amenities, activities, programs, garden styles. the natural, woodland garden style was utilized in several of the interventions done for this project. this was done as a result of regional and local site analysis, site conditions, and known local preferences. it was also done as a means of attracting habitat in order to enhance the 'living' aspect of the landscape. this planting style, however, was entirely possible because of the location of the proposed site. would this style of garden be as restorative in a region known for its arid conditions and sparse growing conditions? would the cost of irrigation be worth the benefits, or in this case would regional preferences win out? research across cultures and across regions would be helpful. figure - : image of 'mountain stream' bedscapes ™. developed with the assistance of dr. roger ulrich, these "scenic curtains" are designed to envelop the patient in a stress-reducing atmosphere within the confines of the hospital. - - specific testing of needs of staff members in the hospital setting would also be extremely helpful. as a certified emergency nurse, the author has enough access to those staff members to be able to do impromptu questioning of preferences and needs but no document was found in the research to quantify any of these anecdotal findings. in terms of patients, specific populations are rarely referred to in the literature. patients are generally spoken of as a single entity experiencing a single form of stress. researchers of stress and its detrimental effects, however, would surely differentiate between the short bursts of anxiety experienced pre-diagnositics versus the long-term weight of dealing with a terminal diagnosis. the needs for unique spaces, for views, for facilities, for choices, and for comfort will differ greatly across the wellness-illness continuum. specific research for designers in this area would be helpful. figure - : beth israel cardiac catheterization study, . patients awaiting cardiac catheter procedures (angioplasties, angiograms, stent implantations, etc.) are routinely brought into the diagnostic room several minutes prior to the actual test for preparations, last minute screening, research trials, etc. strong sedatives/analgesics are generally used to keep the patient awake but calm (diazepam, fentanyl, versed). this randomized trial showed a dramatic reduction in stress with exposure to the "natural scenes" combined with "natural sounds". one has to query the results of a study, however, when the first investigator listed is also associated with the product. this would be an intriguing study to conduct at random cardiac units across north america. questions arise as to "how much nature is enough?" roger ulrich has shown benefits in patients who are exposed simply to curtains imprinted with natural imagery. a cardiac catheterization study done in at beth israel, nyc, showed dramatic stress reduction in patients exposed to natural scenes with natural sounds while awaiting catherization (horowitz and ulrich, ). however, ulrich does agree with lewis ( ) that, as participation increases so too do the benefits. is a small, green roof top garden sufficient to give the restorative benefits required? and, if so, for what segment of the patient, visitor, staff population is this enough? or is it necessary or even desirable to provide all users with access to large open spaces in which to wander or wheel or gaze? - 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june, ; signed on july by the representatives of states (official records of the world health organization, no. , p. ) and entered into force on april . world health organization. , [online], available: http://www.who.int/en/ [ , march]. wrensch, ruth. , the history of herbs, university press of mississippi, jackson. wright, j.r., braithwaite, w.m. & forster r.r. , planning for urban recreational open space: towards community-specific standards. centre for resources development, university of guelph. yaffe, kristine. , walking protects women from cognitve decline , address given to the american academy of neurology's rd annual meeting in philadelphia, pa, may - , reported by associated press may , , [online], available: http://www.intelihealth.com/ih/ihtih/wsihw / / / .html [ , july]. - - http://www.who.int/en/ http://www.intelihealth.com/ih/ihtih/wsihw / / http:// / http:// http:// .html appendix i: principles of universal design in order to achieve accessibility of built forms and open spaces, the following guidelines should be applied to design and programming. . aim for equitable use: • design is useful and marketable to people with diverse abilities. • provide the same means of use for all users: identical whenever possible/equivalent when not. • avoid segregating or stigmatizing any users. • provisions for privacy, security, and safety should be equally available to all users. • make the design appealing to all users. . aim for flexibility in use: • design accommodates a wide range of individual preferences and abilities. • provide choice and options for use. • facilitate the user's accuracy and precision. • provide adaptability to the user's pace. . aim for legibility of essential information: • use of the design is easy to understand, regardless of user's experience, knowledge, cultural background, language skills, or concentration level but not condescending. • eliminate unnecessary complexity. • simple signage and wayfinding. • accommodate a wide range of literacy and language skills. • arrange information consistent with its importance (hierarchy of information). . aim for awareness of diverse interpretations: • use different modes (pictorial, verbal, tactile) for redundant presentation of essential information. • provide adequate contrast between essential information and its surroundings. • provide compatibility with a variety of techniques or devices used by people with sensory limitations (eg. signage for sight- impaired) . . aim for tolerance for error: • design should minimize hazards and the adverse consequences of accidental or unintended actions. • arrange elements to minimize hazards and errors: frequently used elements easily accessible and visible. • provide choices and options to prevent users entering into situations beyond their abilities. • provide warnings of hazards and errors. . aim for low physical effort always an option: - - • design can be used efficiently and comfortably and with a minimum of fatigue, yet opportunities for challenge are available. • allow user to maintain a neutral body position. • use reasonable operating forces. • minimize repetitive actions. • minimize sustained physical effort. . size and space for approach and use: • appropriate size and space is provided for approach, reach, manipulation, and use regardless of user's body size, posture, or mobility. • provide a clear line of sight to important elements for any seated /standing user. • make reach to all components comfortable for any seated/standing user. • accommodate variations in hand and grip size. • provide adequate space for the use of assistance devices or personal assistance. modifed from: center for universal design. , the principles of universal design, developed for north carolina state university (online), available: http://www.design.ncsu.edu: /cud/univ design/princ overview.htm ( , november). - - http://www.design.ncsu.edu: /cud/univ appendix ii: principles of cpted (crime prevention through environmental design) cpted ((crime prevention through environmental design) contends that by designing the physical environment in a manner that positively influences human behaviour, it is possible to create a climate of safety in a community. perhaps as significant as the reduction in crime, is the heightened feeling of security sensed by the legitimate users of the space. as a -hour facility, the hospital requires a design strategy that, without abandoning aesthetics, allows for safe passage by staff and visitors to and from cars/buses/buildings/programs at every hour of the night. the principles of cpted contend that, while there are occasions in which locked gates and fences become necessary, much can be done to heighten safety and security through manipulation of the external environment and its components. cpted was developed in the 's for use by architects, city planners, landscape architects, interior designers, and law enforcement personnel. the principles of cpted hinge on the following five key strategies: territoriality, natural surveillance, activity support, access control/target hardening, and image/maintenance. . territoriality. people protect territory that they feel is their own and have a certain respect for the territory of others. ownership is expressed through good upkeep, and care and attention to environment: fences, artwork, paving, signage, planting, and gateways. applying a hierarchy of space identifies ownership by delineating private space from public space through real or symbolic boundaries. . natural surveillance. criminals don't want to be seen. visual access around buildings, along pathways and in outdoor spaces is maximized to discourage intruders. elements to be considered: • building orientation (to face open space), • windows (placement, height), • entrances & exits (indoor-outdoor relationships), • parking lots (isolation versus clustering) , • walkways (lighting, designated, redundancy of loops), • landscape planting (open versus closed, pruning of shrubs to maintain visibility), • fences and walls (permeability, escape routes), • signage (to discourage and/or encourage use as required). landscaping in sensitive areas adheres to the "groundcover-canopy" strategy. in the hospital environment, eye level must be considered from a wheelchair position. - - the addition of programs, activities, or persons in plain view further discourages unwanted behaviour (for example, parking lot attendants and reception clerks). lighting of sensitive areas will further enhance natural surveillance. . activity support. encouraging positive activity in public spaces helps discourage crime. this has the added benefit of providing restorative benefits if patients are in visual access of these activities (ulrich ). programs designed to bring community members together for legitimate activities increases natural surveillance as well as feelings of ownership, thus preventing crime. providing amenities that support community events furthers this strategy. . natural access control/target hardening. interventions may be required to enforce restrictions on use/access. natural access control is aimed at preventing users from entering into unsafe situations through the use of sidewalks, paving, lighting, signage and/or landscaping to clearly guide the public to and from entrances and exits. the use of fences, signage and/or or landscaping to prevent and/or discourage public access to or from dark and/or unmonitored areas may also be required. target hardening, necessary in higher risk areas, uses physical barriers, security devices and tamper-resistant materials to restrict entrance. it is expected that areas of a health care facility will require this more definite form of crime prevention in addition to the more general environmental manipulations. in particular, placement of emergency call boxes and security personnel posted at parking lots/walkways for shift changes. . image/maintenance considerations. a maintained place is a watched place. ensuring that a building or open space is clean, well maintained, and graffiti-free facilitates the cpted principles of natural surveillance, natural access control and territorial reinforcement. recommended cpted references: national crime prevention council. (online), available: http://www.ncpc.org/ add dc.htm ( , january). cpted home page. (online), available: http://www.opted.com.au/ ( , december). royal canadian mounted police. , 'creating safer communities website' (online), available: http://www.rcmp-ccaps.com/cpted.htm ( , january). - - http://www.ncpc.org/ add dc.htm http://www.opted.com.au/ http://www.rcmp-ccaps.com/cpted.htm [pdf] as the world becomes trauma–informed, work to do | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / . . corpus id: as the world becomes trauma–informed, work to do @article{beckerblease astw, title={as the world becomes trauma–informed, work to do}, author={kathryn a. becker-blease}, journal={journal of trauma & dissociation}, year={ }, volume={ }, pages={ - } } 	kathryn a. becker-blease 	published 	psychology, medicine 	journal of trauma & dissociation the term trauma-informed is trending. google searches for the term traumainformed care have been measurable since at least , with a noticeable uptick since . google trends also show a disproportionate interest in the united states, perhaps in part because of national efforts from the national center for trauma-informed care and the national child traumatic stress network, both funded by the substance abuse and mental health services administration, and other national efforts (hanson… expand view on taylor & francis tandfonline.com save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations view all topics from this paper 	wounds and injuries citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency when sexual trauma survivors with severe psychiatric disabilities experience institutional 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(oohc) settings 	c. bailey, anna klas, r. cox, h. bergmeier, julie avery, h. skouteris 	psychology, medicine 	health & social care in the community 	 	 	 save alert research feed toward coercion free, trauma-informed care in australian adult mental health services: strategies for social workers 	dyann ross 	psychology 	 	 save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency a critical look at trauma-informed care among agencies and systems serving maltreated youth and their families 	r. hanson, j. lang 	medicine 	child maltreatment 	 	 	pdf 	view excerpts, references background save alert research feed trauma‐informed or trauma‐denied: principles and implementation of trauma‐informed services for women 	d. e. elliott, p. bjelajac, r. fallot, l. markoff, b. reed 	psychology 	 	 save alert research feed responding to the needs of youth who are homeless: calling for politicized trauma-informed intervention 	suzanne 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the shrew: regulating prisoners through women-centered mental health programming 	k. kendall, s. pollack 	sociology 	 	 	pdf 	view excerpt, references background save alert research feed trauma theory without feminism? evaluating contemporary understandings of traumatized women 	emma tseris 	psychology 	 	 	 	view excerpts, references background save alert research feed betrayal trauma: the logic of forgetting childhood abuse 	r. kluft 	medicine 	 	 	view excerpt, references background save alert research feed advancing a national cradle-to-grave-to-cradle public health agenda 	s. bloom 	psychology, medicine 	journal of trauma & dissociation : the official journal of the international society for the study of dissociation 	 	 	pdf 	view excerpts, references background save alert research feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue [pdf] toward a taxonomy of rehabilitation interventions: using an inductive approach to examine the "black box" of rehabilitation. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /j.apmr. . . corpus id: toward a taxonomy of rehabilitation interventions: using an inductive approach to examine the "black box" of rehabilitation. @article{dejong towardat, title={toward a taxonomy of rehabilitation interventions: using an inductive approach to examine the "black box" of rehabilitation.}, author={g. dejong and s. horn and j. gassaway and m. slavin and m. dijkers}, journal={archives of physical medicine and rehabilitation}, year={ }, volume={ }, pages={ - } } 	g. dejong, s. horn, + authors m. dijkers 	published 	medicine 	archives of physical medicine and rehabilitation a barrier in outcomes and effectiveness research is the ability to characterize the interventions under review. this has been the case especially in rehabilitation in which interventions are commonly multidisciplinary, customized to the patient, and lack standardization in definition and measurement. this commentary describes how investigators and clinicians, working together, in a major multisite stroke rehabilitation outcome study were able to define and characterize diverse stroke… expand view on pubmed udel.edu save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations results citations view all figures and topics from this paper 	 figure 	 figure 	cerebrovascular accident 	black box 	taxonomy 	chaperonine-containing t-complex location 	ical 	medical records 	ural (computer) 	velo 	stroke rehabilitation 	span and div 	i/o controller hub 	standards characteristics 	adenotonsillectomy 	classification 	rehabilitation therapy paper mentions observational clinical trial taxonomy of neurorehabilitation treatments and outcome measures: a multicentre italian study the main aims of the observational study are to taxonomize the contents of rehabilitation understanding goals and treatments provided to people with parkinson disease(pd) and multiple… expand 	conditions	multiple sclerosis, parkinson disease, stroke fondazione don carlo gnocchi onlus june - july citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency treatment taxonomy for rehabilitation: past, present, and prospects. 	m. dijkers, t. hart, theodore tsaousides, j. whyte, j. zanca 	psychology, medicine 	archives of physical medicine and rehabilitation 	 	 save alert research feed advancing rehabilitation practice through improved specification of interventions. 	j. zanca, l. turkstra, + authors m. dijkers 	psychology, medicine 	archives of physical medicine and rehabilitation 	 	 save alert research feed what do clinicians need from a rehabilitation treatment taxonomy? an alternate approach for describing treatment content versus process. 	s. fasoli, christine c. chen 	medicine 	archives of physical medicine and rehabilitation 	 	 save alert research feed models of rehabilitation – commonalities of interventions that work and of those that do not 	i. cameron 	psychology, medicine 	disability and rehabilitation 	 	 	highly influenced 	view excerpts, cites background save alert research feed conceptual overview of frameworks for measuring quality in rehabilitation 	h. hoenig, jeanne lee, m. stineman 	medicine 	topics in stroke rehabilitation 	 	 save alert research feed new approach to study the contents and outcomes of spinal cord injury rehabilitation: the scirehab project 	g. whiteneck, julie cassaway, m. dijkers, a. jha 	medicine 	the journal of spinal cord medicine 	 	 	pdf save alert research feed opening the black box of post-stroke rehabilitation: stroke rehabilitation patients, processes, and outcomes. 	g. dejong, s. horn, b. conroy, d. nichols, e. healton 	medicine 	archives of physical medicine and rehabilitation 	 	 save alert research feed toward a theory-driven classification of rehabilitation treatments. 	t. hart, theodore tsaousides, + authors m. dijkers 	psychology, medicine 	archives of physical medicine and rehabilitation 	 	 	view excerpt, cites background save alert research feed pushing the frames of reference in traumatic brain injury rehabilitation. 	l. diller 	psychology, medicine 	archives of physical medicine and rehabilitation 	 	 	pdf save alert research feed scirehab project series: the occupational therapy taxonomy 	rebecca ozelie, catherine sipple, + authors j. gassaway 	medicine 	the journal of spinal cord medicine 	 	 	 save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency the structure and structural effects of va rehabilitation bedservice care for stroke. 	d. reker, h. hoenig, + authors p. duncan 	medicine 	journal of rehabilitation research and development 	 	 	pdf save alert research feed differences in rehabilitation services and outcomes among stroke patients cared for in veterans hospitals. 	h. hoenig, r. sloane, r. horner, m. zolkewitz, d. reker 	medicine 	health services research 	 	 save alert research feed acute and subacute rehabilitation for stroke: a comparison. 	r. keith, d. wilson, p. gutierrez 	medicine 	archives of physical medicine and rehabilitation 	 	 save alert research feed rehabilitative placement of poststroke patients: reliability of the clinical practice guideline of the agency for health care policy and research. 	m. johnston, k. wood, w. stason, p. beatty 	medicine 	archives of physical medicine and rehabilitation 	 	 save alert research feed adherence to postacute rehabilitation guidelines is associated with functional recovery in stroke 	p. duncan, r. horner, + authors t. dudley 	medicine 	stroke 	 	 	 save alert research feed relationships between disability measures and nursing effort during medical rehabilitation for patients with traumatic brain and spinal cord injury. 	a. heinemann, p. kirk, + authors c. granger 	medicine 	archives of physical medicine and rehabilitation 	 	 save alert research feed functional status and therapeutic intensity during inpatient rehabilitation 	a. heinemann, b. b. hamilton, j. linacre, b. wright, c. granger 	medicine 	american journal of physical medicine & rehabilitation 	 	 save alert research feed nursing interventions classification 	g. bulechek, j. mccloskey 	medicine 	 	 save alert research feed predicting follow-up functional outcomes in outpatient rehabilitation. 	j. baker, r. fiedler, k. ottenbacher, j. czyrny, a. heinemann 	medicine 	american journal of physical medicine & rehabilitation 	 	 save alert research feed postacute stroke guideline compliance is associated with greater patient satisfaction. 	d. reker, p. duncan, + authors t. dudley 	medicine 	archives of physical medicine and rehabilitation 	 	 save alert research feed ... ... related papers 	abstract 	figures and topics 	paper mentions 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. 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damiani (university of turin), henriette danes (university of eotvos - hungary), davide di palma (university of naples “parthenope” - italy), monica dragoicea (university politehnica of bucharest - romania), ario federici (university of urbino “carlo bo” - italy), filippo gomez paloma (university of salerno - italy), emilia florina grosu (bolyai university - romania), luca impara (unicusano university - italy), mario lipoma (university of enna kore -italy), bela molnar (university of eotvos - hungary), agnes nemeth-toth (university of budapest - hungary), goran oreb (university of zagreb - croatia), elvira padua (san raffaele rome university), valentina perciavalle (university of catania - italy), eliisa pitkasalo (university of tampere - finland), gaetano raiola (university of salerno - italy, antonio donato sciacovelli (university of turku - finland), mirela vasilescu (university of craiova - romania). francesco peluso cassese goran oreb davide di palma, antonio ascione stefania morsanuto, francesco peluso cassese domenico tafuri, vittoria molisso luisa bonfiglio inclusione scolastica e strategie di integrazione / school inclusion and integration strategies editoriale / editorial l’importanza di sviluppare la prospettiva educativa ed inclu- siva dello sport / the importance to develop the educational and in- clusive perspective of sport analisi sperimentale sull’effica- cia degli interventi di pet therapy nella disabilità cognitiva e psichi- ca / experimental analysis about the efficacy of pet therapy inter- ventions in cognitive and psychic disability autismo: corporeità, attività motoria e sport / autism: corpo- reity, motor activity and sport l’importanza dell’attività fisi- ca per il raggiungimento del be- nessere fisiologico, psicologico e nelle relazioni sociali in soggetti con sclerosi multipla / the impor- tance of physical activity to achieve the physiological, psychological and social relations in people with multiple sclerosis » p. » » » » indice / summary stefania morsanuto, domenico tafuri sergio bellantonio giuseppe madonna, marcello merolla francesco maria melchiori davide di palma, antonio ascione ricerca sperimentale ed analisi dei dati sull’influenza dell’attività sportiva nella disabilità cognitiva e psichica / experimental research and analysis of data on the influ- ence of sports in the disabled cog- nitive and psychic il corpo come mediatore didatti- co: tra cosa si insegna e come si apprende / the body as an educa- tional mediator: between what is taught and how it is learned i progetti del settore giovani- le e scolastico della f.i.g.c. per l’integrazione sociale / projects of f.i.g.c. youth department for social integration autoefficacia nella promozione dell’attività sportiva: meta-inter- pretazione per la definizione del modello concettuale di ricerca / self-efficiency in the promotion of sports activity: meta-interpretation for the definition of the conceptual research model sviluppare il sistema sportivo per favorire l’inclusione dei sog- getti disabili: il no-profit / devel- op the sport system to promote the inclusion of people with disabili- ties: the no-profit » » » » » cia_ _hersch.indd © dove medical press limited. all rights reserved clinical interventions in aging : ( ) – r e v i e w management of the behavioral and psychological symptoms of dementia elizabeth c hersch sharon falzgraf va puget sound health care system, tacoma, washington, usa correspondence: elizabeth c hersch geriatrics and extended care (a- gec), va puget sound health care system, bldg , room , veterans drive sw, tacoma, wa , usa tel + ext fax + email herschec@yahoo.com abstract: more than % of people with dementia experience behavioral and psychological symptoms of dementia (bpsd). bpsd are distressing for patients and their caregivers, and are often the reason for placement into residential care. the development of bpsd is associated with a more rapid rate of cognitive decline, greater impairment in activities of daily living, and diminished quality of life (qol). evaluation of bpsd includes a thorough diagnostic investiga- tion, consideration of the etiology of the dementia, and the exclusion of other causes, such as drug-induced delirium, pain, or infection. care of patients with bpsd involves psychosocial treatments for both the patient and family. bpsd may respond to those environmental and psychosocial interventions, however, drug therapy is often required for more severe presentations. there are multiple classes of drugs used for bpsd, including antipsychotics, anticonvulsants, antidepressants, anxiolytics, cholinesterase inhibitors and nmda modulators, but the evidence base for pharmacological management is poor, there is no clear standard of care, and treatment is often based on local pharmacotherapy customs. clinicians should discuss the potential risks and benefi ts of treatment with patients and their surrogate decision makers, and must ensure a balance between side effects and tolerability compared with clinical benefi t and qol. keywords: dementia, management, behavioral symptoms, psychological symptoms typical behavioral and psychological symptoms of dementia eighty to % of residents of long term care facilities have a major psychiatric ill- ness. dementia is the most prevalent, observed in %– % of residents (rovner et al ; devane and mintzer ). regardless of its etiology, dementia is a clinical syndrome that expresses itself in three areas: cognitive defi cits, psychiatric and behavioral disturbances, and diffi culties in carrying out daily functions (de dyn et al ). alois alzheimer, in his description of dementia, noted behavioral and psychological symptoms of dementia (bpsd) are prominent manifestations of the illness, including paranoia, delusions of sexual abuse, hallucinations and screaming (kozman et al ). in , the international psychogeriatric association convened a consensus conference on the behavioral disturbances in dementia. the consensus group made this statement: “the term behavioral disturbances should be replaced by the term bpsd, defi ned as symptoms of disturbed perception, thought content, mood or behavior that frequently occur in patients with dementia (kozman et al , p ).” bpsd is not a diagnostic entity but is instead a term that describes a clinical dimension of dementia (lawlor ). the multiple cognitive impairments of dementia are often associated with mood disorders and sleep disturbances. bpsd includes disinhibited behavior, delusions and hallucinations, verbal and physical aggression, agitation, anxiety and depression (carson et al ). bpsd can cause tremendous distress for both the patient and the caregiver, and is often the trigger for referral of these patients to primary care and specialist services and placement in residential or nursing home clinical interventions in aging : ( ) hersch and falzgraf care (steele et al ; ballard et al ). the development of bpsd is also associated with a poorer prognosis, a more rapid rate of cognitive decline, illness progression (stern et al ; paulsen et al ), greater impairment in activities of daily living (adls) (lyketsos et al ) and diminished quality of life (qol) (gonzales-salvador et al ), and it adds signifi cantly to the direct and indirect costs of care (o’brien and caro ). at least half of patients attending outpatient dementia clinics, and more than % of patients in nursing homes have some sort of bpsd (zaudig ). the prevalence of bpsd in these hour care settings has been reported to be as high as %, with individual behaviors including delusions ( %– %), depression (up to %), and aggression and hostility ( %– %). as many as % of alzheimer’s dementia (ad) patients will develop symptoms of bpsd during the course of their illness, often with the onset of cognitive impairment (lyketsos et al ). patients with mixed ad and vascular dementia have the highest level of psychiatric disturbances (zaudig ; kindermann et al ; kozman et al ). while the origin of bpsd remains unclear; it is presumed there are multiple etiologies for these symptoms. there are neurobiological, psychological (premorbid personality features and responses to stress), and social (environmental change and caregiver factors) aspects (zaudig ). the neurobiology of behavioral disturbances involves correlations between memory defi cits and decreasing cholinergic function, and between serotonin and noradrenaline depletion and a his- tory of depression or aggression. dysregulations in gaba (gamma-aminobutyrate)-ergic, serotonergic and noradrener- gic neurotransmitter systems that have been associated with increased aggressiveness and disturbances are also found in dementia patients (eichelman ; stoppe et al ). bpsd are now accepted as an important therapeutic target in dementia. mild forms of bpsd may respond to simple environmental and psychosocial interventions. although non-pharmacologic interventions should be the fi rst line of treatment, drug therapy is often required for the more severe psychotic, aggressive, and agitated presentations (lawlor ; sink et al ). methods of measuring bpsd and the associated challenges it is important to remember that behavior is merely a form of communication (kozman et al ). bpsd can be diffi cult to diagnose, given the variety of symptoms. evaluation of bpsd includes a thorough diagnostic investigation, careful consideration of the etiology of the dementia, and the exclusion of other causes, such as drug-induced delirium or adverse effects of treatments for comorbid conditions (finkel et al ; zaudig ). undiagnosed medical problems such as pain, depression, dehydration, sleeping diffi culty, anxiety and delirium can all lead to agitation. pain is often underdiagnosed in patients with demen- tia, and can manifest itself by behavior changes (such as agitation and increased confusion) and decreased mobility (pautex et al ). language diffi culties associated with dementia interfere with the patient’s ability to express pain. in addition, the autonomic activation in response to pain may be blunted in ad patients. a number of pain scales have been developed to evaluate pain in patients with dementia. some are self-report (for milder dementia); others, such as the pain-ad-pain assessment in advanced dementia (lane ), measure non-verbal signs such as breathing, vocalization, facial expression, and body language. a small study (douzjian ) found that empiric pain medication reduced troublesome behaviors, and allowed for a reduction in psychoactive medication. positioning and physical therapy may able be helpful. sleep disturbances may be associated with and part of bpsd. circadian rhythms may be altered in ad. patients with lewy body dementia have a high incidence of rem sleep disorders, acting out their dreams. clinicians should evaluate medications that may disrupt sleep. other common medical causes of confusion and agitation in the elderly include infections, endocrine disorders, fl uid and electrolyte imbalances, and constipation (daniel ). emotional and interpersonal issues (such as dislike for certain foods or reactions of other people to the patient’s behavior) can be a signifi cant factor in agitation. environmental factors, such as enclosed spaces, isolation, and visual and auditory sensory deprivation may all contribute to or cause a problem. the diagnostic evaluation and treatment of bpsd require special considerations. institutionalized, demented and acutely ill elders, particularly those taking multiple medications, are at risk for bpsd. the aging brain provides a different substrate for both the therapeutic and potentially toxic effects of medications. in elderly patients with degen- erative brain disorders, the normal redundancy, interdepen- dence, and checks and balances of neuronal networks and neurotransmitters may be disturbed or defi cient. for example, delirium may be reversible if the underlying medical causes are addressed promptly, or fatal if overlooked or untreated. a careful medication review should be performed, paying particular attention to any recently introduced medications. clinical interventions in aging : ( ) management of bpsd elderly patients may be more vulnerable to the cognitive effects of drug interactions or to what may be considered therapeutic blood drug levels in younger patients (stoppe et al ; daniel ). many medications can cause delirium or dementia-like symptoms (tariot, profenno et al ). while drugs with anticholinergic properties are often associated with delirium or behavior changes, many others such as psychoactive and cardiovascular drugs may also be implicated. more than scales are available for measuring the behavioral manifestations of dementia (weiner et al ; stoppe ). a number of instruments have been developed to assess the range and severity of bpsd (see table ). the most useful, in terms of outcomes assessment, are the cohen- mansfi eld agitation inventory (cmai), neuropsychiatric inventory: nursing home version (npi-nh), and behavioral pathology in ad (behave-ad) scales. they are particu- larly useful because of their specifi city, reliability and validity in bpsd (zaudig ; de deyn et al ). it is not clear how much of a percentage change in each assessment tool represents a clinically signifi cant response, however (lee et al ). recognition of bpsd is the fi rst step in developing a management plan, and care must be taken to establish its presence. the goal of treatment should be to detect and manage bpsd before caregiver burnout and irreversible damage to the support environment occurs. the plan should consider the severity and intrusiveness of the behavior and whether non-pharmacologic intervention is suffi cient or the behavior is signifi cant enough to require both pharmacologic and psychological interventions (lawlor ). identify- ing target syndromes (such as psychotic syndrome versus psychomotor agitation or a sleep disturbance) is useful in development of the management plan. useful clinical out- comes such as nursing home placement, qol, and caregiver burden improve a clinician’s ability to interpret test results and inform patients and families about the risks and benefi ts of treatment (sink et al ). non-pharmacologic therapy and its evidence care of patients with bpsd involves a broad range of psycho- social treatments for both the patient and family. caregiver education, support and behavioral training are integral parts of the intervention for these patients (lawlor ; sink et al ). interventions need to be approached in a systematic manner that includes management of the patient’s physical health, psychiatric symptoms, and environmental factors (kozman et al ). in a study by palmer et al ( ), the use of hearing aids improved scores on the behave-ad. environmental adjustments, such as lifestyle support are generally fi rst line interventions; however, many cases of aggression, agitation and psychotic symptoms may require pharmacotherapy (zaudig ). individualized music therapy, bright light treatment (blt) and aromatherapy have been found to improve certain prob- lematic behavioral symptoms (lawlor ), as has pet therapy (sink et al ). in a randomized controlled trial (rct) by smallwood et al ( ), a combination of aromatherapy and massage mid-afternoon resulted in a reduction in the fre- quency of behavioral disturbances. in a larger, double-blind, placebo-controlled trial, aromatherapy was found to be a safe and effective treatment for clinically signifi cant agitation in patients with severe dementia (ballard et al ). lovell et al ( ) studied the effect of blt on levels of agitation in moderately to severely demented persons. agitation scores were signifi cantly reduced during therapy compared with controls (lovell et al ). good sleep hygiene, avoidance of table common scales used for measuring the behavioral manifestations of dementia test name test description cohen-mansfi eld developed in . it examines agitation inventory types of agitated behavior, including (cmai) pacing, verbal or physical aggression, repetitious mannerisms, screaming and general restlessness.a neuropsychiatric inventory: assesses behavioral disturbances: nursing home delusions, hallucinations, agitation, version (npi-nh) dysphoria, anxiety, apathy, irritability, euphoria, disinhibition, aberrant motor behavior, nighttime behavior disturbances and appetite and eating abnormalities.b behavioral pathology in developed in . it is a structured ad (behave-ad) psychiatric interview, assessing behaviors in areas: paranoid and delusional ideation, hallucinations, activity disturbances, aggressiveness, diurnal rhythm disturbances, affective disturbance and anxieties and phobia.c clinical global impression establishes a global rating of all aspects of change (cgi-c) of the patient’s condition. functional assessment measures the levels of basic activities staging scale (fast) such as bathing and toileting, and rates patients from independent to totally dependent. aballard et al ; kozman et al . bcarson et al . ccarson et al ; kozman et al . clinical interventions in aging : ( ) hersch and falzgraf caffeine and alcohol, and adequate daytime physical activity can be benefi cial, particularly for patients who have sleep disturbances and depression. in a randomized controlled trial by teri et al ( ), a combination of exercise training and caregiver education on behavioral management techniques resulted in improvements in depression and a trend toward less institutionalization. teaching caregivers techniques to minimize behavior problems can make the home environ- ment less stressful for both the family and the patient (see table ). sloane et al ( ) performed an rct which mea- sured agitation and aggression, comparing usual hygiene with person-centered showering and towel baths. results showed that the latter techniques were effective methods of reducing bpsd during bathing persons with dementia. finally, physi- cal restraints should be avoided, for they are associated with injury, not protection, of confused or demented patients (miles et al ; sink et al ). pharmacologic management and its evidence the evidence base for drug treatment of the behavioral and psychological symptoms of dementia is poor, considering the size of the problem and the distress these symptoms cause. over the years, drug prescribing for bpsd has evolved in a haphazard and anecdotal way. although there are multiple classes of drugs in use for neuropsychological symptoms, including antipsychotics, anticonvulsants, antidepressants, anxiolytics, cholinesterase inhibitors and nmda modula- tors, there is no consensus nor clear standard of care, and treatment is often based on local pharmacotherapy customs (sink et al ). a balance needs to be made between side effects and tolerability and safety issues compared with clini- cal benefi t and qol (kozman et al ). in elderly patients, it is possible that any medication could help and/or harm, and the safety of a drug must be considered in the context of its known effi cacy (schneider et al ). since the neurobiology of bpsd is still unclear, it seems likely that the symptoms may involve different neurotransmitter systems and may therefore respond to different therapies (kozman et al ). drug-responsive symptoms include anxiety, verbal and physical agitation, hallucinations, delusions, and hostility, whereas wandering, hoarding, unsociability, poor self-care, screaming and other stereotypical behavior seem to be unresponsive to all drugs (maletta ; stoppe et al ). pharmacologic interven- tion is often necessary and includes use of antidepressants for mood disorders, anticonvulsants for nonpsychotic agitation and antipsychotics for aggression, agitation and psychotic symptoms. antidepressants, anxiolytics and hypnotics should only be used in patients with marked and persistent symptoms and drug treatment should be targeted to specifi c syndromes that are clinically signifi cant because of their frequency, pervasiveness, or impact (lawlor ). if drug therapy is to be instituted, sink et al ( ) recommend two approaches to the management. one is to identify the target symptom and choose a drug that is known to treat symptoms most closely related to the one the patient is exhibiting (as mentioned above). an alternative approach is one guided by current evidence in combination with the goal of minimizing side effects. they recommend beginning with a cholinesterase inhibitor if the patient is not already on one, because they are well tolerated and may benefi t cognition and function. it is important to remember that titration speed and target dosage of psychoactive drugs are substantially reduced in the elderly (daniel ). benzodiazepines should be avoided, especially for long term management, as their use can lead to increased confusion, falls and may paradoxically increase agitation in patients with dementia. no psychoactive medication prescribed to treat neuropsychiatric symptoms of dementia should be continued indefi nitely and attempts at table behavioral management interventions activity associated intervention with potential bpsd bathing make a safe bathroom. be prepared, don’t rush. ensure room and water temperature are comfortable. wash hair last. a recent study found benefi t of person-centered bathing and towel bath in decreasing agitation and discomfort.a dressing limit choices. prepare clothing. give specifi c cues. provider larger clothing and soft stretchy fabrics. provide duplicate outfi ts and comfortable shoes with velcro. give positive reinforcement. eating maintain a regular mealtime. avoid distraction at meals. check the food temperature. honor preferences when possible, and offer fi nger foods. wandering provide adequate daily physical activity. create a safe environment and safe wandering paths. remove reminders of leaving (coats, umbrella). have alarms or bells at exit doors. id bracelet and “safe return” programs are available. incontinence scheduled voiding. be attentive to nonverbal cues (such as pacing). simplify clothing and clear obstacles. put signs (including pictures) at the bathroom door. give positive reinforcement. asloane et al . clinical interventions in aging : ( ) management of bpsd drug withdrawal should be made regularly. because of the instability of the symptoms of bpsd, many patients who are prescribed antipsychotics for neuropsychiatric symptoms will no longer need them when the drug is later discontinued (stoppe et al ). medications commonly used to treat bpsd in psychotic, behaviorally disturbed elders, an ideal medication should have rapid onset, sustained action and minimal somatic and cognitive side effects (daniel ). conventional anti- psychotics, such as haloperidol, have been used effectively to control the behavioral and psychological symptoms of demen- tia. other drugs, such as valproate and carbamazepine, have shown some effi cacy in controlling behavioral symptoms in elderly patients (mellow et al ; tariot et al ; devane and mintzer ). however, only the atypical antipsychotics risperidone and olanzapine currently have the best evidence of effi cacy in treating neuropsychiatric symptoms. trials of cholinesterase inhibitors have had consistent yet small positive effects as well (sink et al ). antipsychotics antipsychotic medications have been the mainstay of psycho- pharmacological treatment for bpsd during the last several decades despite their overuse in the s and the federal regulations implemented in the early s (schneider et al ). up until the mid s, conventional neuroleptics such as haloperidol were the primary pharmacologic treat- ments for bpsd. antipsychotics are the drugs of choice in the treatment of intrusive delusions and hallucinations. coexisting nonpsychotic symptoms including sleeplessness, excitability, hostility, belligerence, emotional liability, rest- lessness, agitation, aggression and irritability may also show improvement with antipsychotics. other symptoms such as hypersexuality, apathy and withdrawal do not generally improve. since antipsychotics have such a narrow therapeutic window, they should be prescribed and dosage adjusted with the expectation of clinical improvement within a certain timeframe (kindermann et al ). if improvement is not observed, the medication could be discontinued or switched after two to four weeks (schneider et al ; schneider, tariot et al ). low dosages and careful dose titration are needed when prescribing them to the elderly with dementia. however, these low dosages may also lead to limited effi cacy (stoppe et al ). in the past, antipsychotic use in dementia has been excessive, possibly inappropriate, and poorly monitored. the goal of antipsychotic therapy must be the improvement in a specifi c target behavioral syndrome without impairing other aspect of dementia such as cognition, function, and quality of life (lawlor ). antipsychotics are more effective than placebo, but the effect is modest and they are frequently associated with adverse effects, includ- ing increased risk of falls and drowsiness, parkinsonism, akathisia, tardive dyskinesa (td), social withdrawal, accelerated cognitive decline, qt prolongation, stroke, and sensitivity reactions (ballard et al ). both conventional antipsychotics and just the presence of psychosis have been associated with more rapid cognitive decline in dementia patients (schneider, dagerman et al ). patients with lewy body dementia have been reported to have marked sensitivity, including neuroleptic malignant syndrome, to typical and atypical antipsychotics, especially risperidone (ballard et al ; sink et al ). the newer atypical antipsychotics are associated with fewer extrapyramidal symptoms (eps) (jeste et al ; de dyn et al ). the perceived safety advantages of the atypi- cals include less of the following: sedation, cardiovascular (cv) adverse effects, postural instability, falls and movement disorders. the fda added warnings of increased cv adverse events to the us prescribing information for some atypical antipsychotics in april , january and february . in april , the fda issued a health advisory for increased risk for death with use of atypicals in patients with dementia (kozman ; schneider, dagerman et al ). atypical antipsychotics the american academy of neurology recommends the use of antipsychotics to treat agitation and psychosis in patients with dementia where environmental manipulation fails, and guidelines state that atypical antipsychotics may be better tolerated than older conventional antipsychotics (doody et al ; carson et al ). clozapine, the prototypical atypical antipsychotic, was approved in . since then, risperidone, olanzapine, quetiapine, ziprasidone and aripip- razole have been introduced (carson et al ). risperidone was the fi rst agent to be proven effective for the behavioral and psychological diagnoses of dementia, and it has the largest database of double-blind controlled trials to support its effi cacy (de dyn et al ). it is effective in controlling aggression, agitation and psychotic symptoms in patients with many different forms of dementia. it is well tolerated and does not further impair the daily function of elderly patients with dementia (zaudig ). atypical antipsychotic drugs in general are widely used to treat psychosis, aggression and clinical interventions in aging : ( ) hersch and falzgraf agitation in patients with ad, however, their benefi ts are uncertain and concerns about safety have emerged. in a double-blind, placebo-controlled trial (schneider, tariot et al ), outpatients with ad and psychosis, aggression or agitation were randomly assigned to receive risperidone, olanzapine, quetiapine, or placebo. no signifi - cant differences were noted with regard to improvement on the cgic scale. adverse effects offset advantages in the effi cacy of atypicals for the treatment of bpsd (schneider, tariot et al ). a cochrane review (ballard et al ) evaluated placebo-controlled studies with atypicals. only had suffi cient data for a meta-analysis. the review looked at outpatients or people living in care facilities and found (ballard et al , p ): . a signifi cant improvement in aggression with risperidone and olanzapine compared to placebo. . a s i g n i f i c a n t i m p r o v e m e n t i n p s y c h o s i s w i t h risperidone. . risperidone and olanzapine patients had a signifi cantly higher incidence of serious adverse cv events and eps (especially with risperidone doses greater than milligram). . a signifi cant increase in drop-outs with risperidone and olanzapine. . data was insufficient to comment on cognitive function. these reviewers and numerous other studies throughout the literature have come to similar conclusions that, over- all, the evidence for olanzapine and risperidone supports their effi cacy compared with placebo, but their potential for increased risk of cv events and mortality is a serious concern and limits their overall effectiveness (ballard et al ; carson et al ; schneider, tariot et al ). like- wise, the committee on the safety of medications reported a three-fold increase in the risk of cv adverse events with the atypicals, compared with placebo. both olanzapine and risperidone have good evidence base and they appear to be well tolerated otherwise. considering the consistency of the risks among the various studies reviewed, it is likely that there is increased risk from any of the atypicals and not from a particular one (schneider et al ). the modest effi cacy and uncertain response rates combined with the risks detailed suggest that antipsychotics should be used within the context of medical need and the effi cacy and safety of alternatives (schneider, dagerman et al ). their use should be targeted towards the treatment of those patients in whom bpsd are prominent and associated with signifi cant distress, functional impairment or danger to the patient (de dyn et al ). the use of lower doses might be prudent and effective (schneider, dagerman et al ). the adverse effects associated with atypical antipsychotics seem to be dose related, supporting the practice of starting with a low dose and increasing slowly as the drug is tolerated. in addition to the adverse cv effects discussed above, there is increasing evidence that the treatment with antipsychotics may be associated with metabolic disturbances such as impaired glucose metabolism, hyperlipidemia, and weight gain, all of which may adversely affect qol (lee et al ; jones et al ). neutropenia and agranulocytosis may also occur with olanzapine (benedetti et al ; zaudig ). there were no clinically relevant changes in blood pressure or heart rate in phase iii studies with risperidone, nor were there any occurrences of ekg abnormalities (katz et al ; zaudig ). there has been no evidence for increased injury, fall or syncope; however the risks of somnolence and urinary tract infections (or incontinence) are increased with the atypicals (schneider, dagerman et al ). sedation is particularly likely with olanzapine, which can also be associated with increased confusion (schneider, tariot et al ). conventional antipsychotics conventional (or typical) antipsychotics have been exten- sively studied in elderly demented patients with disappointing results. effect size and response rates have been modest, with no consistent evidence that any conventional antipsychotic is more effective than another. potentially serious adverse effects occur frequently, especially motor side effects, sedation, cognitive impairment, orthostatic hypotension, constipation, and urinary hesitancy (daniel ; lee et al ). in the us, concerns about overuse of antipsychotics led to the introduction of legislation (the omnibus budget reconciliation act of ) that attempted to restrict pre- scribing of antipsychotics to residents of nursing homes (streim ; stoppe et al ). before the introduction of this act, up to % of nursing home residents were treated with antipsychotics (lee et al ). haloperidol is the most widely studied typical antipsy- chotic and modest improvement in psychosis and agitation has been reported in investigations with it (kindermann et al ). a cochrane review of haloperidol compared with placebo con- cluded that haloperidol had no effect on agitation, behavioral symptoms as a whole, or cgic scores, but appeared to reduce aggression (sink et al ; kozman et al ). in two other meta-analyses there was no difference in effi cacy among the different typical antipsychotics on neuropsychiatric symptoms (these studies included haloperidol, thioridazine, thiothixene, clinical interventions in aging : ( ) management of bpsd chlorpromazine, trifl uoperazine and acetophenazine). there is no evidence that any one typical antipsychotic is more effec- tive than another (sink et al ). in addition, conventional antipsychotics were associated with a signifi cantly higher adjusted risk of death than were atypicals in all subgroups defi ned according to the presence or absence of dementia or nursing home residency (wang et al ). the greatest increases in risk occurred soon after therapy was initiated and with higher dosages. conventional antipsychotics are at least as likely as atypicals to increase the risk of death among elderly persons and should not be used to replace the atypicals that were discontinued in response to the fda warning (wang et al ). elderly patients are sensitive to eps, especially parkin- sonism, akathisia, and td. only one third of patients with dementia show behavioral improvement with conventional antipsychotic treatment, while the majority of patients treated with these will experience side effects, especially the anticho- linergic effects (tariot, profenno et al ). the presence of eps can lead to medication intolerance, falls and other adverse effects. in addition, typical antipsychotics have seri- ous, potentially fatal, consequences in patients with lewy body dementia (ballard et al ; zaudig ). in one study, patients started on very low dosages of haloperidol or thioridazine developed parkinsonism within nine months of antipsychotic therapy (kindermann et al ). the lower incidence of eps and td seen with atypicals represents a signifi cant benefi t to patients. choosing antipsychotic agents with fewer anticholinergic properties is an important consid- eration in elderly patients. anticonvulsants anecdotal reports have suggested that anticonvulsants such as carbamazepine, valproic acid and gabapentin may be effective in the treatment of bpsd. gabapentin has shown some benefi t when treating aggressive behavior in patients with dementia, but it has not been well studied (hawkins et al ; kozman et al ). carbamazepine has been investigated in several trials and was found to reduce agita- tion, restlessness and anxiety (tariot et al ; stoppe et al ), however the effi cacy and tolerability of long term use of this drug is yet to be established (kozman et al ). ataxia can occur in elderly patients treated with carbamaze- pine (kindermann et al ) and in the united states there is an fda “black box” warning for hematologic toxicity and the potential for drug-drug interaction with its use (sink et al ). valproic acid had been reported to show some positive effects, with a benign adverse effect profi le (mellow et al ; stoppe et al ); however, in more recent studies it does not appear to be effective for the treatment of neuropsychiatric symptoms of dementia, whether in short or long acting preparations. it also caused signifi cantly more adverse effects than placebo, especially sedation. therefore, valproic acid is not routinely recommended for the treatment of bpsd (sink et al ). antidepressants depression is common in patients with dementia. as many as % of patients with dementia have signifi cant depres- sive symptoms at some stage. reducing symptoms such as irritability may aid in the treatment of bpsd (kozman et al ). biochemical data have suggested that serotonergic defi cits in ad contribute to aggressive verbal and physi- cal outbursts, sleep disturbance, depression and psychosis (polluck et al ). some antidepressants have signifi cant side effects, and not all studies have shown effi cacy in treat- ment of neuropsychiatric symptoms of dementia other than depression (sink et al ; kozman et al ). selective serotonin reuptake inhibitors (ssri’s) may have “neuroleptic” effects by reducing dopaminergic outfl ow, and dysregulation in serotonergic neurotransmission may play an important role in the psychotic symptoms of dementia patients (polluck et al ). citalopram is the most selec- tive, with moderate potency and high bioavailability. an open pilot study using citalopram demonstrated that it was well tolerated and the patients experienced a signifi cant reduction in agitation, hostility and suspicion (polluck et al ). one review found that citalopram signifi cantly improved emotional bluntness, confusion, irritability, anxi- ety, fear, depressed mood, and restlessness (nyth et al ; kozman et al ). in ad patients, psychotic and nonpsy- chotic behavioral disturbances improved acutely with both citalopram and perphenazine. however, only citalopram demonstrated acute effi cacy superior to placebo (polluck et al ). sertraline, in conjunction with donepezil, showed statistically signifi cant improvement in cgic scores (finkel et al ; kozman et al ), but in another trial, there was no signifi cant benefi t of sertraline on neuropsychiatric symptoms other than depression (lyketsos et al ; sink et al ). trazodone is widely used for agitation, sleep disorders, and disruptive behavior because of its sedative effect and negligible anticholinergic activity. a comparison of trazodone with haloperidol for treatment of agitation in patients with dementia showed similar overall effi cacy of both drugs and a lower rate of adverse effects in the trazodone group (sultzer et al ; stoppe et al ). clinical interventions in aging : ( ) hersch and falzgraf cholinesterase inhibitors cholinesterase inhibitors are licensed for the treatment of mild to moderate ad (kozman et al ). in some studies, donepezil had no effect on neuropsychiatric symptoms while in one study, anxiety, depression/dysphoria and apathy were signifi cantly improved compared with placebo (feldman et al ; kozman et al ). in lewy body dementia, donepezil has shown signifi cant improvement over time in behavioral symptoms (lanctot and herrmann ; kozman et al ). galantamine has demonstrated effectiveness, and has shown a signifi cant reduction in behavioral disturbances and improvement in the total npi caregiver burden. a study using rivastigmine showed that long term therapy with it can slow the progression of bpsd symptoms, including aggressiveness and activity disturbances (rosler et al ; kozman et al ). in another study, rivastigmine signifi - cantly improved neuropsychiatric and behavioral symptoms compared with baseline (aupperle et al ; kozman et al ). although some of these trials have shown statistically signifi cant differences, most data reporting the benefi ts on behavioral and psychological disturbances are from second- ary outcome measures and the magnitude of effect has been small and of questionable clinical signifi cance (sink et al ). further research is needed. other medications medications such as memantine, buspirone, beta blockers, benzodiazepines, and thiothixene (finkel et al ) have been evaluated for their use in treating bpsd. adding memantine to donepezil resulted in better outcomes (than placebo) for dementia patients on measures of cognition, adls, global outcome, and behavior. it showed a signifi - cantly benefi cial effect compared with placebo in relation to agitation and aggression (tariot, farlow et al ; kozman et al ). however, there does not appear to be a clini- cally signifi cant benefi t using memantine in the treatment of neuropsychiatric symptoms of patients with moderate to severe ad (sink et al ). a case report noted the addition of buspirone to antidepressants and olanzapine after weeks resulted in signifi cant improvements (cooper ; kozman et al ). its benign adverse effect profi le also makes buspirone a useful alternative in mild agitation. however, it showed less effect on agitation compared with trazodone or placebo (lawlor et al ; stoppe et al ). low dose propranolol was effective in reducing disruptive, aggressive behavior in the majority of outpatients in one study; however, there are no controlled trials on use of beta blockers in bpsd (shankle et al ; kozman et al ). benzodiazepines show signifi cantly more improvement in bpsd symptoms when compared with placebo; however, they should be used with caution because of their adverse effects (stoppe et al ; zaudig ; kindermann et al ). risks associated with pharmacologic treatment of bpsd the elderly are at particular risk for drug-related adverse events. older patients in general, and patients with dementia in particular, are more sensitive to medication adverse effects, including anticholinergic effects, orthostatic hypotension, sedation, parkinsonism, tardive dyskinesia (td) and cog- nitive impairment than younger patients with dementia or individuals without dementia. they are also especially prone to falls, and drugs that cause sedation, postural hypotension or extrapyramidal symptoms (eps) have been found to cause an increased incidence of falls (zaudig ). the aging body undergoes physiological changes that affect both pharmacokinetics and pharmacodynamics (devane and mintzer ). aging is characterized by a progressive loss of the functional capacities of all the vital organs, including the brain. there is an alteration in the body’s composition of lean and fat body mass and a decrease in the excretory capacity of the kidney, causing many drugs to be eliminated from the body more slowly. changes in drug distribution are also important. age related reductions in liver mass, hepatic blood fl ow and hepatocyte function result in delayed clearance of drugs that are metabolized in the liver. lower starting doses, smaller dose increments and longer dose escalation periods must be used to avoid potentially toxic drug accumulation. concurrent illnesses and associated polypharmacy are extremely common in elderly patients. potential drug-drug interactions must be considered (zaudig ). central and peripheral anticholinergic adverse effects, such as constipation, urinary retention, dry mouth, blurred vision and cognitive defi cits, are particularly troublesome for elderly patients (kindermann et al ). peripheral effects include urinary retention, constipation, blurred vision, and dry mouth. central anticholinergic effects include sedation, confusion, delirium, and cognitive decline. elders are also more sensitive to the adverse effects related to blockade of adrenergic and histaminic receptors. histaminic blockade causes sedation and adrenergic receptor blockade can lead to orthostatic hypotension, dizziness and syncope (which can contribute to falls) (devane and mintzer ). evidence also suggests that the relative affi nity at muscarinic and adrenergic receptors may affect multiple aspects of cognition, including memory and executive functions (daniel ). clinical interventions in aging : ( ) management of bpsd an approach to management of bpsd the initial approach to the management of bpsd should always include the non-pharmacologic therapies discussed earlier. often, pharmacologic intervention is needed. as mentioned previously, there is no consensus nor clear stan- dard of care when it comes to pharmacologic management of bpsd. we would like to offer, instead, general guidance for fi rst and second line treatment of some of the behavioral and psychological symptoms associated with dementia. most patients with dementia present with more than one of these symptoms, and a single medication may be able to treat multiple symptoms. first, when the diagnosis of ad has been made, a cholinesterase inhibitor could be initiated, with or without memantine (in mild to moderate ad). for second line therapies, providers should use target symptoms to guide their treatment. the ssri antidepressants citalopram and sertraline have the best evidence for their use in reducing symptoms such as irritability, sleep disturbances, and some aggression. trazodone may also be helpful, particularly with sleep disturbances and agitation. benzodiazepines can be effective but must be used with caution in the elderly. finally, the atypical antipsychotics such as risperidone and olanzap- ine may be used for controlling aggression, agitation and psychotic symptoms in many different forms of dementia. we caution, however, that close monitoring be undertaken, and the medications be carefully titrated for effect. if they are not effective in controlling target symptoms, then the medications should be discontinued. conclusion the increasing life expectancy in most western societies along with other factors such as improved detection of dementia, administration of disease modifying agents, and improved healthcare techniques, has led to a rapidly growing number of elderly people with dementia and longer survival of these patients. behavioral and psychological disorders occur in most dementing conditions, usually in later stages. one half of these patients experience psychotic symptoms, such as delusions and hallucinations, which in turn makes them more vulnerable to severe agitation. treatment of these disorders in dementia should reduce the patients’ and the care- givers’ burden, resulting in lower rates of institutionalization and less psychophysical morbidity in the family (stoppe et al ; kindermann et al ). caregiver education, support and behavioral training, and environmental modifi cations are important components of the management of bpsd, and should be the fi rst step in approaching the dementia patient with these symptoms. however, pharmacologic management is often needed. there are many classes of medications to choose from for treating these neuropsychiatric symptoms, but the evidence behind treatment is varied and confusing. clinicians considering pharmacologic therapy, especially the antipsychotics, should discuss the potential risks and benefi ts of such therapy with patients and their surrogate decision makers, noting any risk factors those patients may have (for cv disease, for example). good clinical practice dictates that patients receive individual- ized pharmacotherapeutic dosing regimens initiated and modi- fi ed relative to clinical effi cacy and tolerability and targeted to specifi c neuropsychiatric symptoms (tariot, profenno et al ). “the art of drug treatment is to use the right drug for the right symptoms at the proper stage of the disease starting low and going slow (gauthier , p ).” references 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c e f d f b d e d f c f c f e e f f b b c f b b e d f b d e b e e e d f f e f e e e e c c e e b b e e e e> /sve <feff e e e e e e c c e e e e e c c b d f b d e d f c c f e e f b f b c e d f b d e e b e f e d f f e c c e e e e c c e e b e e b c e b e e e> >> >> setdistillerparams << /hwresolution [ ] /pagesize [ . . ] >> setpagedevice environmental changes to reduce self-harm on an adolescent inpatient psychiatric ward: an interrupted time series analysis vol.:( ) european child & adolescent psychiatry https://doi.org/ . /s - - - o r i g i n a l co n t r i b u t i o n environmental changes to reduce self‑harm on an adolescent inpatient psychiatric ward: an interrupted time series analysis gurpreet k reen ,  · jill bailey  · lorna mcguigan  · natasha bloodworth ,  · rasanat fatima nawaz ,  · charles vincent , received: april / accepted: july © the author(s) abstract existing interventions to reduce self-harm in adolescents admitted to psychiatric wards are usually focused on individual psychological treatments. however, the immediate ward environment in which treatment takes place is an impor tant factor in the success of the treatment and can also inf luence the likelihood of self-har ming behaviours. the aim of the cur rent study was to evaluate changes made to a psychiatr ic ward environment on incidence of self-har m in adolescents. a quasi-exper imental inter r upted time ser ies study was conducted on one child and adolescent psychiatr ic ward. an inter vention was developed alongside st aff and patients to address the high incidence of self-har m on weekday evenings on the ward. the inter vention components involved adding a regular twilight shift ( –  pm) for nursing staff and introducing a str uctured evening activ- ity programme on the ward. a segmented regression analysis of an inter r upted time ser ies found that the rate of self-har m per bed days was already declining at baseline and continued to decline post-inter vention, but the rate of decline was not significant (p = . ). however, the propor tion of patients self-har ming was increasing at baseline and significantly reduced post-inter vention (p = . ), and this reduction was signifi- cantly larger in the evenings (p = . ) compared to other times of day (p = . ). a tailored inter vention targeting the psychiatr ic ward environment helped to reduce the propor tion of adolescents self-har ming on the ward. an inter r upted time ser ies analysis should be considered for future inter ventions making changes to health systems over time. keywords self-harm · inpatient · mental health · adolescent · children · psychiatry introduction self-harm, also referred to as deliberate self-harm, describes the action of intentionally injuring or poisoning oneself regardless of motivation or suicidal intent [ , ]. functions that may motivate or reinforce non-suicidal self-harming behaviour are self-punishment and avoidance of negative emotions [ – ]. other functions of self-harm have also been identified such as interpersonal influence (to seek help from others) and peer bonding (fitting in with others), as well as sensation-seeking (seeking excitement, anti-dissociation) and gratification (self-harming as comforting) [ , ]. func- tions of self-harm with suicidal intent also include many functions associated with non-suicidal self-harm behaviour, in particular coping with self-hatred and sensation seeking [ ]. these functions are exhibited in adolescents, and when combined with factors such as impulsivity and exposure to electronic supplementary material the online version of this article (https ://doi.org/ . /s - - - ) contains supplementary material, which is available to authorized users. * gurpreet k reen gurpreet.reen@psy.ox.ac.uk department of experimental psychology, university of oxford, oxford ox   gg, uk oxford healthcare improvement centre, oxford health nhs foundation trust, oxford ox   jx, uk patient safety collaborative, oxford academic health science network, oxford ox   ga, uk http://orcid.org/ - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf https://doi.org/ . /s - - - european child & adolescent psychiatry others who self-harm, can translate into self-harming behav- iour with or without suicidal intent in the younger popula- tion [ , ]. adolescents with complex mental health needs and who are at serious risk of harming themselves or others may be supported in the community in services such as intensive home treatments and specialist outpatient settings [ – ]. however, some of these patients will be admitted for care in inpatient psychiatric wards [ , ]. around – % of adolescents on inpatient wards will self-harm at least once during their stay, and a proportion of these will self-harm repeatedly as many as times [ – ]. longer duration on an inpatient ward is also predictive of more self-harm inci- dents in adolescents, and therefore, it is essential that ado- lescents should be supported in this setting [ ]. self-harm can have a damaging physical and psychological impact on the young person harming and also negatively impacts others who encounter the incident on a psychiatric ward. clinicians on adolescent psychiatric wards report feeling distressed when attempting to de-escalate a self-harm attempt [ ], in particular if using a restrictive practice [ – ]. other adolescents on the ward are often distressed and influenced by self-harming behaviour and must find ways to cope with these feelings [ , ]. reducing self-harm on adolescent psychiatric wards is necessary to improve the well-being of the young person who self-harms, as well as other patients and clinicians present in this secure environment. risk factors of self‑harm on inpatient psychiatric wards many adolescents on inpatient psychiatric wards have a pre- vious history of self-harm. the risk factors of self-harm with both non-suicidal and suicidal intent are complex and include age, gender, mental health diagnosis, coping strategies, previ- ous self-harm, acute stress response, relationship with family and friends, as well as social deprivation [ , – ]. the likelihood of self-harm is also influenced by more immediate contextual factors such as social influences and the environ- ment of care on inpatient psychiatric wards [ , , , ]. young people may be inclined to self-harm by mimicking self-harming behaviours in others [ ]. this is of particular concern on inpatient psychiatric units, where young people are in close proximity to others who self-harm [ , , ]. however, such contagion effects are only one possible envi- ronmental influence. a combination of loneliness, isolation from others and a lack of stimulation can further contrib- ute to self-harming behaviours of inpatients on psychiatric wards [ , ]. this is likely due to an increase in negative emotions in an individual, as well as the positive functions of self-harm which can provide comfort and excitement during this period [ ]. this is apparent on adult psychiat- ric wards, where self-harming behaviours commonly occur when patients are alone in the evening [ – ] and on pri- vate areas like the bedroom and bathroom [ , ]. young people in the community also report more self-harming thoughts when they are alone [ ] and usually consider self- harm a private act, to be done in secrecy [ ]. the social relationship between adolescents and nursing staff on psy- chiatric wards can also influence self-harming behaviours, as young people reportedly harm less when nursing staff intervened during early warning signs of distress [ ]. as indicated by the interpersonal function of self-harm, it is possible that patients may use self-harming behaviour to seek help when they do not feel supported by nursing staff on wards [ , ]. other contextual factors such as interac- tion with other inpatients, ward rules and routines, length of stay on the ward, amount of leave granted, voluntary or involuntary admission, and the general ward atmosphere are also likely to contribute to self-harming behaviours in ado- lescents admitted on inpatient psychiatric wards [ , , ]. interventions to reduce adolescent self‑harm on wards therapeutic approaches such as dialectical behaviour therapy (dbt) and cognitive behaviour therapy (cbt) are commonly used to treat adolescents who self-harm with and without suicidal intent. dbt is a highly structured psychotherapy delivered in individual sessions and in groups to help patients regulate their emotions and equip them with the skills to tol- erate distress, practice mindfulness and reduce maladaptive behaviours such as self-harm [ , ]. cbt similarly helps patients to regulate their emotions by modifying distorted thinking patterns and strengthening coping, communication and problem solving skills [ , ]. dbt and cbt have been adapted and implemented within inpatient settings and have reduced self-harming behaviours in adolescents [ , – ]. however, the ward environment also plays a key role in the success of these treatments and can actively contribute to self-harming behaviours in adolescents [ , , , ]. safety analysis in other areas of healthcare, and in other industries, also suggest that wider organisational and environmental factors are important contributory factors to safety incidents [ ]. thus, interventions to reduce self-harm in adolescents should not just treat the young person but con- sider improving the immediate psychiatric ward environment for adolescents being cared for in this setting. a small number of interventions have combined thera- peutic interventions with environmental changes on the ward to reduce self-harming behaviour. in one study, adolescent inpatients were exposed to either normal dbt training, dbt-based environmental changes or both [ ]. the envi- ronmental changes included analysing problematic behav- iour in patients and behavioural interventions [ ]. however, only non-suicidal self-harm incidents were monitored in this european child & adolescent psychiatry study and the effects on self-harm were unclear due to high levels of attrition [ ]. more recently, adolescent inpatients were given extensive dbt skills training as well as being introduced to daily leisure activities on the ward such as pet therapy and pottery making [ ]. the intervention was suc- cessful in reducing both suicidal and non-suicidal self-harm when compared to adolescents treated as usual, but the influ- ence of activities as an environmental change on self-harm was unclear [ ]. meaningful activities have often been suggested as a possible way to distract inpatients who may self-harm on an inpatient setting [ , , ] as distraction can help adolescents cope with distress when alone [ , , ]. it is also possible that meaningful activities can serve to replace the positive functions associated with both non- suicidal and suicidal self-harm, such as feelings of gratifica- tion and sensation seeking [ ]. this needs to be examined further on inpatient settings. other interventions have made changes to only the psy- chiatric ward environment to reduce self-harm in patients on the ward. one study found that employing an additional nurse to improve communication between staff and inpa- tients and ensure an ethical approach to rules and routines helped reduce harmful patient behaviours including self- harm [ ]. another intervention, consisting of ten best practices for staff to communicate with inpatients, also showed a significant reduction in self-harming behaviours [ ]. however, these and other similar interventions have been conducted on adult inpatient settings [ – ] and have not always been replicated [ ]. a much larger intervention conducted over  years on an adolescent psychiatric unit significantly reduced self-harm by training staff to improve communication with adolescents on the ward and by improv- ing responses to maladaptive patient behaviours [ ]. staff training and better responses to harmful patient incidents was also found to be effective in reducing aggressive inci- dents in adolescents on a psychiatric ward, including aggres- sion towards themselves [ ]. while these interventions are very important in the longer term care of patients, they do not offer immediate improvements to the ward environment to reduce self-harm in adolescents. environmental changes that do successfully reduce self- harm for both adults and adolescents admitted on a psy- chiatric ward have generally been analysed using a simple pre–post analysis [ , , ]. this analysis does not take into account the longitudinal nature of these changes nor does it consider any pre-intervention trends; for instance, if harmful incidents were reducing before the intervention then a pre–post analysis could show a significant decrease in incidents even when this does not actually exist (i.e., a type error). an interrupted time series analysis is an alternative approach which takes into account both the longitudinal data and pre-intervention trends and should be considered when evaluating health system interventions over time [ , ]. objective the current intervention was designed to improve an ado- lescent psychiatric ward environment with input from staff and patients on the ward. the aim of the intervention was to (i) reduce the rate of self-harm incidents and (ii) reduce the proportion of adolescents self-harming on the ward, by rigorously evaluating the intervention using an interrupted time series analysis. methods study design a quasi-experimental design using an interrupted time series analysis was conducted to evaluate an intervention that made changes to the psychiatric ward environment. the baseline period was st june to st may and the intervention was introduced on st june . out- come data post-intervention was collected for  months. the study was primarily aimed at improving a healthcare service, and therefore, a formal research ethics application was not required. setting and participants the study was carried out on one child and adolescent psy- chiatry inpatient ward in the uk for children aged between and  years. the ward has inpatient beds and has a school for patients on the ward to attend in the day. visiting hours on the ward are usually between . and .  pm in the evenings and many inpatients are also given leave from friday evening to sunday evening to be at home with their families. group therapy sessions happen daily between and  pm, with some occasional activities in the evenings. individual treatment sessions usually consist of weekly meetings with an assigned key nurse, psychiatrist and psychology sessions as needed. patients with emotional dysregulation also attend the ‘managing emotions’ pathway, consisting of individual skill learning and weekly group sessions. medication is pro- vided to patients based on clinical need and within dose recommendations by the british national formulary. this includes antidepressants as clinically required for depres- sion, anxiety, panic or ptsd, low dose antipsychotic some- times prescribed for agitation, and a low dose benzodiaze- pine during de-escalation, only if not possible to de-escalate with good nursing care, distraction or reinforcing of coping skills. rapid tranquisalisation is rarely used on the ward. the ward has a multidisciplinary team of staff who sup- port the care of inpatients, including: full time equiva- lent consultant psychiatrist, trainee doctors, . speciality european child & adolescent psychiatry doctor, . family therapist, . social worker, clinical psychologist, assistant psychologist and . occupational therapists. prior to the intervention, the regular shift patterns for nursing staff on the ward were early ( am– .  pm), late ( .  pm–  pm) and night ( .  pm– . am), with nurses on the ward during early/late and nurses at night. an ad- hoc twilight shift ( –  pm) was introduced on some eve- nings at short notice when the ward was considered unstable, and these would often be covered by expensive temporary nursing staff. intervention the intervention was co-designed with clinical ward staff with regular input from patients to reduce self-harm on the ward. the experiences of clinical staff and routinely col- lected self-harm data on the ward highlighted a clear tempo- ral tend; % of self-harm incidents occurred between  pm and  pm over a year. with this insight, an intervention was designed to focus on the vulnerable evening period on the ward. iterative changes were made to the intervention fol- lowing feedback from staff and patients, but the main inter- vention components did not change. regular twilight shifts the first component of the intervention was introducing a regular twilight shift for nursing staff (  pm–  pm, sun- day–thursday) to provide additional support on the ward during the vulnerable evening period and during the tran- sition of late shift to night shift staff. the regular twilight shifts were introduced from st june . although self- harm incidents on the ward were highest between and  pm, the twilight shifts were kept at  h to comply with nhs guidelines. no twilight shifts were added on fridays and saturdays as many inpatients take leave from friday evenings to sunday afternoon. the intervention component was designed to increase availability of regular nursing staff on the ward during a vulnerable time, rather than employing expensive temporary agency staff. although cost and travel implications made it challenging for regular nursing staff to take these shifts when first introduced, over time there was a gradual decrease of temporary staff being used on the ward as twilight shifts began to be filled by regular nursing staff (see appendix table a. ). evening activities the second component of the intervention was a structured programme of evening activities. the evening activities were introduced gradually on the ward from st july with a complete programme available from st september . these activities were not intended to be directly therapeutic, but simply normal activities for young people to take part in during less structured times of the day. all activities were voluntary. the attendance for each evening activity was not recorded. however, staff on this small inpatient unit made every effort to invite all patients to attend evening activities, and attendance was high at most activities. all patients on the ward attended evening activities during the course of their stay if they were well enough to join. patients were encouraged to suggest activities they would like, and activi- ties offered in the evening changed regularly to reflect their feedback. activities included a games and drama workshop (e.g., role-playing and storytelling), visits from a pets as therapy (pat) dog, mindfulness podcast groups, and an art and coping skills workshop (e.g., drawing, painting and pot- tery), conducted by activity workers or occupational thera- pists on the ward (see table  ). measures outcome measures were collected through routinely avail- able data in the healthcare organisation. all data used in this study is routinely reported by clinical staff on the inpa- tient psychiatric ward through an incident reporting system. the data reported will include detailed information about the incident, such as the type of self-harm, the patient and staff involved, the harm to the patient or others, measures used to contain the self-harm and a narrative summary of the incident. the incident report is subsequently checked by the matron of the inpatient psychiatric ward, the system administrator of the incident reporting database, and the clinical lead for the organisation who is responsible for pro- ducing quarterly reports on self-harm as well as other major incidents. although the clinical staff and the matron were not blinded to the intervention, other parties responsible for checking the data were not aware of when the intervention was happening on the ward. there was no change to routine data-reporting pre- and post-intervention. the primary outcome measures were rate of self- harm per bed days and the proportion of patients table example of a structured evening activity programme on the ward all activities were an hour long and took place before and after even- ing dinner (between and  pm) pat pets as therapy *patients could choose to attend either of the two activities offered evenings activity offered monday mindfulness podcast tuesday art and coping skills; mindfulness podcast* wednesday pat dog visit; mindfulness podcast* thursday games and drama workshop; mindfulness podcast* european child & adolescent psychiatry self-harming. self-harm was defined as intentional self- poisoning or injury, irrespective of whether the act was intended as suicidal or non-suicidal. all types of self-harm were included, such as poisoning, asphyxiation, cutting, burning and other self-inflicted injuries. this definition was in line with the national guidance on how self-harm incidents should be recorded by healthcare organisations. rate of self‑harm incidents per  bed days monthly number of self-harm incidents on the ward were collated between st june and st november . a standardised self-harm rate per occupied bed days was calculated (i.e., the number of self-harm incidents that occurred for every  days an inpatient was on the ward). this is a recommended method to report incidents as it takes into consideration the varying lengths of stay by patients and can also be easily compared to incidents on other wards [ ]. the psychiatric ward in this study had an average bed occupancy rate of . % between november and november (bed occupancy rate prior to these dates was not easily available). to calcu- late the rate of self-harm in june as an example, the number of incidents that occurred during this month was divided by the number of beds available that month (( beds ×  days) × . %), and then multiplied by . monthly rates of self-harm per occupied bed days was calculated overall and was also spilt by time of day to determine whether the reduction of self-harm was larger in the evening compared to other times of the day. for the purpose of this study, evening referred to –  pm (to align with the twilight shift hours) and non-evening was any time of day excluding –  pm. proportion of patients self‑harming the overall rate of self-harm is important but may be unduly influenced by a small number of people who self-harm very frequently [ ]. from a therapeutic standpoint it is argu- ably even more important to reduce the number of people who self-harm. the number of patients self-harming on the ward each month were collated between st june and st november . this was divided by the total number of patients that were admitted on the ward that month, and then multiplied by to obtain the percentage of patients self-harming. this is a standardised measure that takes into account the different number of patients present on inpa- tient wards and can be compared across inpatient services [ , ]. as well as the total proportion, the proportion of patients self-harming in the evening and non-evening period was also calculated. patient characteristics and diagnosis patient characteristics and clinical diagnosis were obtained from the hospital episodes statistics database from the healthcare organisation. patient diagnosis was based on a full clinical assessment conducted by a consultant psychia- trist. these clinical assessments are based on the icd- criteria [ ], the clinical judgment of the psychiatrist and discussions with the patient and their family. when clinically indicated, the diagnosis for mental health patients is clearly described to patients and families, including for patients with emotionally unstable personality disorder. however, in cases when the symptomatology remains unclear, the diagnosis will be tentative and subject to review. statistical analysis patient characteristics at baseline and post-intervention were analysed for differences using an anova and chi square analysis. a segmented regression analysis of an interrupted time series was conducted to compare monthly data on rate of self-harm and proportion of patients self-harming before and after the intervention was introduced, as recom- mended by previous studies [ , , – ]. the analysis was done for a -year baseline period ( st june to st may ) and -month post-intervention ( st june to st november ). it was expected that the interven- tion would have a gradual impact on the outcome of self- harm, and therefore, only the change in slope was analysed at baseline compared to post-intervention over time [ , ]. all data was analysed using r software [ ]. a poisson regression model was used to analyse the rate of self-harm per bed days by including the count of all self-harm incidents as a dependent variable in the model and the occupied bed days as an offset term. a binomial regression model was used to analyse the proportion of patients self- harming. autocorrelation in the data was assessed by exam- ining the partial autocorrelation function and by conduct- ing the breusch–godfrey test [ ]. autocorrelation refers to any significant correlation between data reported at one time point with subsequent time points (i.e.,  month with any subsequent months). a significant correlation between every  months would indicate seasonality in the dataset. minimal autocorrelation was identified for findings that were significant pre and post-intervention. therefore, no adjust- ments for autocorrelation to these models were required. the counterfactual scenario, or the assumption that the pre- intervention trend would have continued unchanged if there was no intervention, was also computed. two patients that self-harmed extensively (> . standard deviations over the mean self-harm incidents per person) were considered out- liers in the study. segmented regression analysis was con- ducted without the outliers and with the outliers included. european child & adolescent psychiatry results participants a total of young people were hospitalised for psychi- atric care on one uk adolescent psychiatric ward between st june and st november . patients ranged from to  years, and mean age was .  years (sd . ). average length of stay was .  days (sd . ) and ranged from to  days. the majority of patients were female (n = , . %) and the remaining patients were male (n = , . %) or did not specify their gen- der (n = , . %). the most common primary mental health diagnosis was eating disorders (n = , . %). only patients had an unspecified mental health disorder ( . %). there were patients on the psychiatric ward before the intervention was implemented ( st june to st may ) and patients after implementation ( st june to st november ). a further patients remained on the psychiatric ward both before and after the intervention was introduced (see table  ). there was no significant difference in age (f = . , p > . ) and gender (x = . , p > . ) between patients in either groups. impact of intervention on rate of self‑harm the average rate of self-harm per bed days per month shows that self-harm incidents reduced post-intervention compared to baseline (see table  ). when split by time of day, the average rate of self-harm per month also showed a reduction both in the evening and non-evening period fol- lowing the intervention compared to baseline. a segmented regression analysis for monthly rates of self-harm per bed days without outliers showed that the rate of self-harm was steadily declining before the inter- vention was implemented, but the rate of decline was not significantly affected by the intervention (see fig.  ; change in slope –  . , % ci –  . to . , p = . ). when split by time of day, the rate of self-harm was declining in the evening and non-evening period before the intervention and again the decline was not significantly affected by the intervention (see fig.  ; evening: change in slope –  . , table patient characteristics pre- and post-intervention pre-intervention dates: st june to st may ; post-intervention dates: st june to st november ; pre- and post-intervention dates: st june to st november pre-intervention (n = ) post-intervention (n = ) pre- and post- intervention (n = ) age, years  mean ± sd . ± . . ± . . ± .  range – – – gender (n, %)  male ( . %) ( . %) ( %)  female ( . %) ( . %) ( %)  not specified ( . %) length of stay, days  mean ± sd . ± . . ± . . ± .  range – – – primary diagnosis (n, %)  adjustment and dissociative ( . %) ( . %)  anxiety ( . %) ( . %)  developmental ( . %) ( . %) ( %)  eating ( . %) ( . %) ( %)  mood ( . %) ( . %)  obsessive compulsive ( . %) ( . %) ( %)  other ( . %) ( . %) ( %)  personality ( . %) ( . %)  phobias ( . %) ( %)  schizophrenia and psychosis ( . %) ( . %)  stress-related ( . %) ( . %)  substance abuse ( . %) ( . %)  unknown ( . %) ( . %) european child & adolescent psychiatry table rate of self-harm per bed days per month pre- and post-intervention, without outliers pre-intervention dates: st june to st may ; post-intervention dates: st june to st november ; evening = –  pm; non-evening = any time excluding –  pm self-harm incidents, total self-harm incidents, evening self-harm incidents, non-evening mean (sd) range mean (sd) range mean (sd) range pre-intervention . ( . ) . – . . ( . ) . – . . ( . ) – . post-intervention . ( . ) – . . ( . ) – . ( . ) – . fig. rate of self-harm per bed days at baseline and post inter- vention. the figure shows the monthly rate of self-harm between st june and st november after removing outliers. the intervention was introduced on st june indicated by the vertical line. the solid red line indicates the segmented regression analysis conducted at baseline and at post-intervention. the red dashed line indicates the counterfactual scenario (i.e. projected rate of self-harm if the intervention had not been conducted) % ci –  . to . , p = . ; non-evening: change in slope –  . , % ci –  . to . , p = . ). this analysis shows that while the rate of self-harm continued to decline on the psychiatric ward after the intervention was intro- duced, this was not significantly affected by the evening- based interventions. when outliers were included in the analysis, the monthly rates of self-harm per bed days was also steadily declin- ing before the intervention but the rate of self-harm sig- nificantly increased following the intervention (change in slope: . , % ci . – . , p < . ). when split by time of day, the rate of self-harm was declining in the evening and non-evening period before the intervention and again the rate significantly increased following the inter- vention (evening: change in slope . , % ci . – . , p < . ; non-evening: change in slope . , % ci . to . , p < . ). this indicates that the rates of self-harm increased post-intervention mostly due to two patients who self-harmed frequently. impact of intervention on proportion of patients self‑harming the average proportion of patients self-harming per month reduced post-intervention compared to baseline (see table  ). when split by time of day, the average proportion of patients self-harming also reduced both in the evening and non-evening period following the intervention compared to baseline. a segmented regression analysis without outliers showed that the proportion of patients self-harming was increasing before the intervention and significantly reduced follow- ing intervention (see fig.  ; change in slope –  . , % ci –  . to –  . , p = . ). when split by time of day, the proportion of patients self-harming per month was also increasing in the evening period before the intervention and significantly reduced after the intervention was introduced (see fig.  ; change in slope –  . , % ci –  . to –  . , p = . ). the proportion of patients self-harming per month in the non-evening period was also increasing before the intervention and reduced after the intervention was intro- duced, but the rate of decline was not significant (change in slope –  . , % ci –  . to . , p = . ). this analysis shows that the proportion of patients self-harming european child & adolescent psychiatry significantly reduced after the intervention was introduced, and this effect was driven primarily by a significant reduc- tion in the evening. when outliers were included in the analysis, the pro- portion of patients self-harming per month was increasing before the intervention but significantly reduced follow- ing intervention (change in slope: –  . , % ci –  . to –  . , p = . ). the proportion of patients self-harming per month in the evening was also increasing before the intervention and reduced after the intervention was intro- duced, but this was trending at significance (change in slope: –  . , % ci –  . to . , p = . ). the pro- portion of patients self-harming in the non-evening period also increased before the intervention and reduced after the intervention was introduced, but the rate of decline was not significant (change in slope: –  . , % ci –  . to . , p = . ). this indicates that even with the two outlier patients included, the proportion of people self-harming reduced post-intervention and this was driven by a reduc- tion in the evening. discussion the current study evaluated an intervention that made imme- diate changes to an adolescent psychiatric inpatient environ- ment to reduce self-harming behaviours with and without suicidal intent. evenings were identified as a peak time for table proportion of patients self-harming per month pre- and post-intervention, without outliers pre-intervention dates: st june to st may ; post-intervention dates: st june to st november ; evening = –  pm; non-evening = any time excluding –  pm patients self-harming, total patients self-harming, evening patients self-harming, non-evening mean (sd) range mean (sd) range mean (sd) range pre-intervention . ( . ) . – . . ( . ) . – . . ( . ) – . post-intervention . ( . ) – . . ( . ) – . . ( . ) – . fig. rate of self-harm per bed days at baseline and post intervention split by even- ing ( - pm) and non-evening period. the figure shows the monthly rate of self-harm between st june and st november after removing outliers, split by time of day. evening refers to - pm and non-evening period refers to any time of day excluding - pm. the intervention was introduced on st june indicated by the vertical line. the solid red line indicates the segmented regression analysis conducted at baseline and at post-inter- vention. the red dashed line indicates the counterfactual scenario (i.e. projected rate of self-harm if the intervention had not been conducted) european child & adolescent psychiatry fig. proportion of patients self-harming at baseline and post inter- vention. the figure shows the proportion of patients self-harming per month between st june and st november after remov- ing outliers. the intervention was introduced on st june indi- cated by the vertical line. the solid red line indicates the segmented regression analysis conducted at baseline and at post-intervention. the red dashed line indicates the counterfactual scenario (i.e. pro- jected proportion of patients self-harming if the intervention had not been conducted) fig. proportion of patients self-harming at baseline and post intervention split by even- ing and non-evening period. the figure shows the proportion of patients self-harming per month between st june and st november after removing outliers. evening refers to - pm and non-even- ing period refers to any time of day excluding - pm. the intervention was introduced on st june indicated by the vertical time. the solid red line indicates the segmented regres- sion analysis conducted at base- line and at post-intervention. the red dashed line indicates the counterfactual scenario (i.e. projected proportion of patients self-harming if the intervention had not been conducted). the intervention therefore achieved its main effect during the even- ing periods european child & adolescent psychiatry self-harm incidents occurring on the ward, and similar rates have been reported on adult psychiatric settings [ – ]. an evening-focused intervention was designed with two main components; introducing a regular nursing shift between and  pm, and implementing a structured activity pro- gramme for weekday evenings. an interrupted time series analysis was conducted to assess the longitudinal effects of the intervention on self-harm in young people. the rate of self-harm was declining at baseline and continued to decline following the intervention, but the rate of decline after the intervention was not significantly different to baseline. nev- ertheless, the proportion of adolescents self-harming did significantly reduce following the intervention compared to baseline, even when two patients with numerous self-harm incidents were included in the analysis. the reduction was significantly larger in the evenings compared to the day, indicating that the evening-based interventions were driv- ing the effects. this finding is both important from a thera- peutic standpoint for patients and for clinical wards where resources are typically overstretched. previous interventions that have made environmental changes to adolescent inpatient settings have either focused on long-term systemic changes with staff training as a main component [ , ] or have made immediate changes on the ward alongside introducing psychosocial therapies [ , ]. this includes a recent study which introduced leisure activities for patients on the inpatient ward similar to those introduced in the present study, but in conjunction with an extensive dbt programme [ ]. the study found that self- harming behaviour and suicide attempts decreased follow- ing the intervention, but a decline in the number of patients self-harming was not reported. it was also not possible to determine the impact of environmental changes on self-harm incidents [ ]. the current study goes beyond these stud- ies in showing that immediate environmental changes can reduce the number of adolescent inpatients who self-harm with and without suicidal intent on the ward. a number of underlying mechanisms and functions of self-harm influenced by the intervention could have led to a reduction in young people self-harming on the ward. availability of an additional nursing staff at a risky time on the ward could make it easier for nurses to intervene when adolescents begin to show early warning signs of distress [ ]. this benefit is likely associated with the availability of nursing staff that have an ongoing relationship with young people on the ward instead of temporary staff that may come on the ward occasionally [ ]. in the current intervention, the twilight shifts began to be increasingly filled by regular staff members and this may have led to a reduction in young people self-harming. it is plausible that increased visibility of staff may also reduce anxiety for patients on the ward and, therefore, reduce the likelihood that self-harm is used as a method to seek help. this is supported by the role of interpersonal functions of self-harm [ – ], as well as stud- ies which find that self-harm and other harmful behaviours occur most often in the absence of regular staff [ , ] and can be reduced by increasing staff visibility on corri- dors [ ]. clinicians in our study reported that an additional member of staff in the evening helped to alleviate stress, suggesting that presence of more staff helps to improve the general ward atmosphere. another component of the intervention was introducing a structured activity programme in the evenings. since eve- nings are generally unstructured times of the day on psy- chiatric wards, some patients may find themselves feeling vulnerable and emotionally distressed during this time and using self-harm as a coping mechanism to regulate nega- tive emotions such as feelings of pain and anger [ , , , , , ]. meaningful activities in the evening have been suggested as a positive way to distract patients who have negative thoughts and feelings [ , , , ], and may help to replace the positive functions associated with self-harm with or without suicidal intent such as sensation-seeking and feelings of gratification [ ]. self-harm is also a private act in young people [ ], and evening activities could delay patients from retreating early to their bedrooms, where they are likely to engage in self-harming behaviours alone or behaviours such as brooding which are indicative of suicidal behaviours [ , ]. patients admitted on psychiatric wards also report feelings of isolation, restriction and loneliness, and activities offered on the ward may foster positive rela- tionships with other inpatients on the ward and feelings of group cohesion [ , ], which can likely reduce feelings of isolation for young people and provide short-term relief. another function of self-harm is the need to form relation- ship with peers through this behaviour [ , ], and this is particularly important when adolescents are confined to an inpatient setting. social activities can help replace this func- tion of self-harm by offering a safe space for inpatients to bond and interact with others on the ward. however, distrac- tion is not always beneficial for adolescents who engage in self-harm [ , ], perhaps because adolescents may only want to be distracted by activities they enjoy. the fact that less young people self-harmed in the present study could be because patients on the ward were involved in decisions about the evening activity programme before these were introduced on the ward and, therefore, were more likely to engage with these activities. however, the intervention did not have an impact on the most vulnerable patients who self- harmed repeatedly as evident by the outliers. this supports the need for a more cohesive programme of care for patients on psychiatric wards; interventions should attempt to pro- vide both short-term relief from distress by improving the ward environment in conjunction with long-term therapeutic care to reduce self-harm for all adolescent patients. european child & adolescent psychiatry the value of an interrupted time series analysis the current study demonstrates that an interrupted time series method can be used to rigorously evaluate inter- ventions that improve healthcare systems over time when randomisation is not possible [ , – ]. specifically, an interrupted time series analysis can account for any trends that may have existed before the intervention was introduced which is not always possible to detect in a simple pre-post analysis [ , , ]. this is highlighted by our findings, where rates of self-harm did not significantly reduce fol- lowing the intervention, as the rate of self-harm was already declining on the ward in  years preceding the interven- tion. better analytical and research techniques have been advocated for interventions that attempt to improve complex healthcare services and systems [ , ] and an interrupted time series is one approach which should be considered when evaluating health systems interventions over time. limitations and future work the current findings should be interpreted in light of the limitations of implementing and evaluating this interven- tion. first, it was not possible to determine which interven- tion component contributed to a reduction in self-harming behaviour in young people. despite introducing the struc- tured activity programme after the twilight shifts had been embedded into practice, the time between these interven- tions was not sufficient to be analysed separately using an interrupted time series analysis. second, while all patients were diagnosed by one psychiatrist using a standard clinical assessment, no validated diagnostic interview was used. this could make it difficult to compare diagnoses of patients in the current study with patients from other interventions. in addition, two patients self-harmed on the ward several times repeatedly during the study period and were considered out- liers for the purpose of analysis. however, it was not clear whether the high rate of self-harm in these patients was due to individual factors or other aspects of the ward. further work is still needed to reduce self-harm in high-risk adoles- cents on psychiatric wards. it was also not possible to deter- mine whether the intervention reduced the number of people self-harming with or without suicidal intent, as intention was not reported in routinely collected incident data. it is likely, however, that the intervention had an impact on both types of self-harming behaviour, given that non-suicidal self-harm and self-harm with suicidal intent often co-occur and are closely related [ , , ]. we recommend that in the future uk healthcare organisations should be encouraged to state the intent of self-harm when reporting these patient incidents, as this will be informative both for clinical teams and when reporting these incidents more widely. another limitation is that the mechanisms of the intervention could only be inferred based on a limited understanding of the contributory factors of a psychiatric ward environment on adolescent self-harming behaviour. more research is needed so that interventions can be developed and targeted more effectively. it was also not possible to determine whether self-harm was influenced by how the intervention was imple- mented on the ward, such as what the staff did during the evening shifts, the type of activities that were conducted and even which inpatients took part in these activities. the aim of the intervention, however, was to identify the main intervention components which could be implemented and adapted based on the local context. conducting an inter- rupted time series analysis further helped to minimise any impact on self-harm due to daily fluctuations on the ward and helped demonstrate the broader impact of the interven- tion over time. conclusion increased staff availability and introducing a structured activity programme during evenings on an adolescent psy- chiatric ward helped to reduce the proportion of young peo- ple who self-harm. this is an important finding both from a therapeutic standpoint and for overstretched healthcare ser- vices, where support can be provided to the most vulnerable patients. the study shows that in mental health, as in other safety–critical settings, changes to the environment and the organisation of care should be considered alongside direct therapeutic interventions when seeking to improve patient safety. an interrupted time series analysis should also be considered when evaluating interventions to health systems over time. acknowledgements we would like to thank all the clinical staff of the psychiatric ward for supporting the intervention, all the patients on the ward for their feedback on the intervention and rachel reeves for her help with providing the data. funding the authors received no specific funding for this work. availability of data due to sensitive patient information, data will not be made publicly available. compliance with ethical standards conflicts of interest the authors have no conflict of interest to declare. ethical approval the study was primarily aimed at improving a health- care service, and therefore, a formal research ethics application was not required. code availability code from r software will be available upon request. european child & adolescent psychiatry open access this article is licensed under a creative commons attri- bution . international license, which permits use, sharing, adapta- tion, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the creative commons licence, and indicate if changes were made. the images or other third party material in this article are included 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https://doi.org/ . /bmj.l https://doi.org/ . /journal.pone. https://doi.org/ . /journal.pone. 	environmental changes to reduce self-harm on an adolescent inpatient psychiatric ward: an interrupted time series analysis 	abstract 	introduction 	risk factors of self-harm on inpatient psychiatric wards 	interventions to reduce adolescent self-harm on wards 	objective 	methods 	study design 	setting and participants 	intervention 	regular twilight shifts 	evening activities 	measures 	rate of self-harm incidents per  bed days 	proportion of patients self-harming 	patient characteristics and diagnosis 	statistical analysis 	results 	participants 	impact of intervention on rate of self-harm 	impact of intervention on proportion of patients self-harming 	discussion 	the value of an interrupted time series analysis 	limitations and future work 	conclusion 	acknowledgements 	references network analysis of methicillin-resistant staphylococcus aureus spread in a large tertiary care facility ioana doina moldovan a thesis submitted to the faculty of graduate and postdoctoral studies in partial fulfillment of the requirements for the master of science in epidemiology school of epidemiology, public health and preventive medicine faculty of medicine university of ottawa © ioana doina moldovan, ottawa, canada, ii table of contents abstract.........................................................................................................................................................iv acknowledgements ......................................................................................................................................vi list of tables ................................................................................................................................................vii list of figures .............................................................................................................................................viii chapter - introduction and study objectives............................................................................................ . introduction........................................................................................................................... . study objectives...................................................................................................................... chapter - background................................................................................................................................. . mrsa........................................................................................................................................ . . healthcare-associated methicillin-resistant staphylococcus aureus (ha-mrsa)............ . . community-associated methicillin-resistant staphylococcus aureus (ca-mrsa............. . . laboratory characterization of ha-mrsa and ca-mrsa genotypes............................ . . reservoirs for mrsa transmission.................................................................................. . . . mrsa reservoirs in acute-care facilities............................................................... . . . mrsa reservoirs in long-term care and acute rehabilitation facilities................ . . . mrsa reservoirs in household environments........................................................... . . the transmission of mrsa strains................................................................................... . social network analysis (sna)............................................................................................... . . network terms& definitions........................................................................................... . . applying sna in epidemiology........................................................................................ . . brief overview of network analysis methods.................................................................... . . study design and data collection................................................................................... . . data analysis................................................................................................................... . . . network visualization............................................................................................. . . . descriptive properties of networks ........................................................................ . description of the ottawa hospital........................................................................................ . hypothesis............................................................................................................................... . ethics approval....................................................................................................................... chapter - study design and methods........................................................................................................ . study design........................................................................................................................... . . study population............................................................................................................. . . inclusion criteria.............................................................................................................. . . exclusion criteria.............................................................................................................. . . definitions......................................................................................................................... . . outcomes............................................................................................................................ . methods...................................................................................................................................... . . data collection.................................................................................................................. . . quality assurance measures............................................................................................... . data analysis.............................................................................................................................. chapter - results....................................................................................................................................... . description of the study population....................................................................................... . primary outcome: feasibility of building a healthcare network in a large tertiary care facility based on electronic medical record data................................................................................ . secondary outcome: identifying the most influential vertices in the healthcare network contributing to the mrsa transmission..................................................................................... chapter - discussion and conclusions...................................................................................................... . discussion.............................................................................................................................. . limitations............................................................................................................................. . conclusions.......................................................................................................................... iii appendix a................................................................................................................................................ appendix b................................................................................................................................................ appendix c................................................................................................................................................ appendix d................................................................................................................................................ references.................................................................................................................................................. iv abstract statement of problem: methicillin-resistant staphylococcus aureus (mrsa) is an antibiotic-resistant bacterium of epidemiologic importance in canadian healthcare facilities. the contact between mrsa colonized or infected patients with other patients, healthcare workers (hcws) and/or the healthcare environment can result in mrsa transmission and healthcare-associated mrsa (ha-mrsa) infections in hospitals. these ha-mrsa infections are linked with increased length of hospital stay, economic burden, morbidity and mortality. although infection prevention and control programs initiated in in canada and other developed countries (e.g., uk, france, belgium, denmark, etc.) have been relatively successful in reducing the rate of ha-mrsa infections, they continue to pose a threat to patients, especially to the more vulnerable in long term care and geriatric institutions. historically, mrsa was a problem mainly in hospital settings but after mid- s new strains of mrsa have been identified among people without healthcare-related risks and have been classified as community-associated mrsa (ca- mrsa). furthermore, the distinction between ha-mrsa and ca-mrsa strains is gradually waning due to both the introduction of ha-mrsa in communities, and the emergence of ca-mrsa strains in hospitals. the purpose of this thesis was to explore the feasibility of constructing healthcare networks to evaluate the role of healthcare providers (e.g., physicians) and places (e.g., patient rooms) in the transmission of mrsa in a large tertiary care facility. method of investigation: a secondary data case-control study, using individual characteristics and network structure measures, conducted at the ottawa hospital (toh) between april st, and march th, . v results: it was feasible to build social networks in a large tertiary care facility based on electronic medical records data. the networks' size (represented by the number of vertices and lines) increased during the outbreak period (period ) compared to the pre-outbreak period (period ) for both groups and at all three toh campuses. the calculated median degree centrality showed significant increase in value for both study groups during period compared to period for two of the toh campuses (civic and general). there was no significant difference between the median degree centrality calculated for each study group at the heart institute when compared for the two reference periods. the median degree centrality of the mrsa case group for period showed no significant difference when compared to the same measure determined for the control group for all three toh campuses. however, the median degree centrality calculated for period was significantly increased for the control group compared to the mrsa case group for two toh campuses (civic and general) but showed no significant difference between the two groups from the heart institute. in addition, there was a correlation between the two network measures (degree centrality and eigenvector centrality) calculated to determine the most influential person or place in the mrsa case group networks. however, there was no correlation between the two network’s measures calculated for physicians included in mrsa case group networks. conclusions: it is feasible to use social network analysis as an epidemiologic analysis tool to characterize the mrsa transmission in a hospital setting. the network's visible changes between the groups and reference periods were reflected by the network measures and supported also by known hospital patient movements after the outbreak onset. furthermore, we were able to identify potential source cases and places just prior of the outbreak start. unfortunately, we were not able to show the role of healthcare workers in mrsa transmission in a hospital setting due to limitations in data collection and network measure chosen (eigenvector centrality). further research is required to confirm these study findings. vi acknowledgements the last two years have been a period of intense learning for me, not only in the scientific arena, but also on a personal level. writing this thesis has had a big impact on me. i would like to reflect on the people who have supported and helped me so much throughout this period. i would like first to express my deepest sense of gratitude to my supervisors, dr. ann jolly and dr. kathy suh, who offered me their continuous guidance, support and encouragement throughout the course of this thesis. ann and kathy, you definitely provided me with the tools that i needed to choose the right direction and successfully complete my thesis. thank you! also, i wish to thank ms. linda pelude for her involvement on my thesis committee and for her guidance and expertise throughout the process, which was very much appreciated. i would like to offer my regards and appreciation to all of those who supported me greatly and were always willing to help me throughout the duration of my thesis, including ms. ann carisse, ms. natalie bruce, ms. jenny mckay and toh data warehouse team, especially ms. yiran (erin) liu. last but not least, i would like to take this opportunity to express the profound gratitude from my deep heart to my beloved family who have given me unconditional love, support and encouragement throughout my master program. above all, i would like to thank my wonderful husband, ovidiu, for his enormous patience, support, encouragement and motivation at all time over these years. you are always there for me! thank you! vii list of tables table . terminology and definitions commonly used in social network analysis ................................. table . the ottawa hospital data warehouse datasets and examples of variables included in these datasets.......................................................................................................................................... table . characteristics of the studied patients admitted at the ottawa hospital during the period of april st, - march st, ................................................................................................. table . index day and reference periods (period & ) for toh social network analysis....................... table . the overall structure network measures for both study groups and reference periods.......................................................................................................................................... table .a comparing the median degree centrality between the reference periods for each study group and campus................................................................................................................................. table .a comparing the median degree centrality between the study groups for each reference period and campus................................................................................................................................. table . mrsa cases - ucinet results of freeman degree centrality and eigenvector centrality for period & - civic campus.......................................................................................................... table . mrsa cases - ucinet results of freeman degree centrality and eigenvector centrality for period & - general campus...................................................................................................... table . mrsa cases - ucinet results of freeman degree centrality and eigenvector centrality for period & - heart institute.......................................................................................................... table . mrsa cases' rooms - ucinet results of freeman degree centrality and eigenvector centrality for period & - civic campus.................................................................................................... table . mrsa cases' rooms - ucinet results of freeman degree centrality and eigenvector centrality for period & - general campus................................................................................................ table . mrsa cases' rooms - ucinet results of freeman degree centrality and eigenvector centrality for period & - heart institute................................................................................................. table . freeman degree centrality and eigenvector centrality measures calculated for attending physicians of mrsa cases - civic campus.............................................................................. table . freeman degree centrality and eigenvector centrality measures calculated for attending physicians of mrsa cases - general campus.......................................................................... table . freeman degree centrality and eigenvector centrality measures calculated for attending physicians of mrsa cases - heart institute............................................................................. viii list of figures figure . overall mrsa rates, canadian nosocomial infection surveillance program (cnisp) - (per , patient-admissions).................................................................................. figure . overall mrsa rates, canadian nosocomial infection surveillance program (cnisp) - (per , patient-admissions).................................................................................... figure . overall canadian mrsa strains identified in the canadian nosocomial infection surveillance program, – .................................................................................................................... figure . change of the predominant canadian pulse-field gel electrophoresis mrsa isolates, identified in cnisp, during - ....................................................................................................... figure . molecular characterization of ca-mrsa and ha-mrsa genotypes in canadian hospitals between and ................................................................................................ figure . ring network display.................................................................................................................... figure . energy kamada-kawai displayed network.................................................................................. figure . flow diagram showing the process of linking mrsa cases to a valid inpatient encounter in toh data warehouse (tohdw) based on medical record number and admission date............................................................................................................................................... figure . creation of control group from tohdw................................................................................ figure . creation of roommate controls from control group ............................................................ figure . matching round : roommate controls to cases..................................................................... figure . matching round : remaining controls to remaining cases.................................................. figure . final matched cohort................................................................................................................ figure . civic campus - comparing the number of mrsa positive cases identified in one week to the mean+ *stdev of the mrsa positive cases calculated for consecutive weeks during the study period................................................................................................................................ figure . general campus - comparing the number of mrsa positive cases identified in one week to the mean+ *stdev of the mrsa positive cases calculated for consecutive weeks during the study period................................................................................................................................ figure . heart institute - comparing the number of mrsa positive cases identified in one week to the mean+ *stdev of the mrsa positive cases calculated for consecutive weeks during the study period................................................................................................................................ figure . civic campus - healthcare social networks for the period (pre-outbreak) and period (outbreak).............................................................................................................................. - ix figure . general campus - healthcare social networks for the period & period........................... - figure . heart institute - healthcare social networks for the period & period............................... - figure . time series of heart institute cases network data................................................................ - . chapter - introduction and study objectives . introduction methicillin-resistant staphylococcus aureus (mrsa), one of the most common causes of healthcare- associated infections in canada spreads between people by direct contact, shared items or by contact with contaminated surfaces. historically, mrsa has been a healthcare acquired pathogen. the mrsa control in hospitals has been important because of the severity of infection among vulnerable patients and the limited antibiotics available for treatment. while mrsa infection rates have been decreasing since in canada, especially in hospital settings, mrsa still remains a significant cause of infection. the actual infection rates continue to surpass those observed in early s. for example, in , the mrsa infection incidence rate was . cases per , patient admissions and . cases per , patient-days compared to . cases per , patient admissions and . cases per , patient-days in . , similar trends have been observed in other developed countries. furthermore, mrsa infection is associated with increased morbidity, mortality and healthcare costs . in , in canada, it was estimated that . % of hospitalized patients became infected or colonized with mrsa resulting in an annual hospital cost of about $ . million. , in a report published by the public health agency of canada, in approximately % of patients with a non-bloodstream mrsa infection died and % of patients with an mrsa bloodstream infection died at days after the date of positive culture. with changing trends in healthcare delivery resulting in the provision of complex treatments outside of acute healthcare facilities (e.g., ambulatory care, physician office and home settings), there is an increased need for infection prevention and control measures outside of hospital settings. the overall goal of this thesis is to examine the feasibility of building healthcare networks in a large tertiary care setting (using network analysis methods), and then based on calculated network measures to evaluate the role of healthcare workers and places (as part of this social network) in the transmission of mrsa. . study objectives the primary objective of this study was to assess the feasibility of constructing healthcare networks in a hospital setting by using electronic medical record data (from the ottawa hospital data warehouse and the ottawa hospital infection prevention and control program), and social network analysis. the secondary objective was to determine the network structure measures (e.g., centrality, density) and use these measures to evaluate the role of healthcare workers (hcws) and places (e.g., patient rooms) in the transmission of mrsa in a large tertiary care facility. ∗ ∗ note: on the initial thesis proposal submitted to the university of ottawa there was a third objective for this project: to evaluate whether the networks generated by the ottawa hospital (toh) data resemble actual mrsa stain specific transmission. this objective was impossible to complete as it was discovered after the submission of the thesis proposal that mrsa strain data was not available. chapter - background . mrsa methicillin - resistant staphylococcus aureus (mrsa) is a virulent staphylococcus aureus (s. aureus) strain, cross-resistant to beta-lactam antibiotics (e.g., methicillin, cloxacillin/oxacillin, cephalosporins) and with heterogeneous resistance to non-beta lactam antibiotics (e.g., aminoglycosides, macrolides, clindamycin, tetracyclines, quinolones). s. aureus is a common bacterium of the human's normal flora which asymptomatically colonises approximately one third of the human population, and is considered one of the most frequently encountered causes of bacterial infection in humans. , methicillin resistance in s. aureus was first isolated in shortly after the introduction in clinical use of the semisynthetic penicillinase-resistant penicillins (e.g., methicillin). , while the majority of patients from whom mrsa is isolated are colonized (they are asymptomatic and do not have any evidence of infection), it is well recognized that colonization generally precedes the development of infection. mrsa is a pathogen of epidemiologic importance due to its resistance to many first line antibiotics and reported association with increased morbidity and mortality compared with susceptible s. aureus strains. as a result, many healthcare facilities have implemented specific measures to limit the spread of mrsa among patients. until mid- s mrsa was considered almost exclusively a healthcare associated pathogen (ha- mrsa). , , , since then, new strains of mrsa have been identified among people without healthcare- related risks and these have been classified as community-associated mrsa (ca-mrsa). , , , ca- mrsa, the result of a clonal dissemination of mrsa, is genetically distinct from ha-mrsa (having unique virulence genes and factors not present in ha-mrsa strains). , , . . healthcare-associated methicillin-resistant staphylococcus aureus (ha-mrsa) the canadian nosocomial infection surveillance program (cnisp), a collaborative effort of the public health agency's (phac) centre for communicable disease and infection control (ccdic), the national microbiology laboratory (nml), and sentinel hospitals across canada ( as per phac, in there were sentinel hospitals in provinces) which participate as members of the canadian hospital epidemiology committee (chec), a subcommittee of the association of the medical microbiology and infectious disease (ammi) canada, has been conducting surveillance in canadian acute-care hospitals for more than years. toh is part of the cnisp network of hospitals. in , cnisp used the following case definition for ha-mrsa: • "isolation of staphylococcus aureus from any body site and • resistance of isolate to oxacillin and • patient must be admitted to the hospital and • is a "newly identified mrsa case" at a canadian hospital epidemiology committee (chec) facility at the time of hospital admission or identified during hospitalization. this includes: - mrsa cases identified for the first time during this hospital admission - cases that have been previously identified at other non-chec sites (since we want newly identified mrsa cases at chec sites) - cases that have already been identified at the current site but are new cases. this can only be identified if the previously identified case has another strain. mrsa surveillance exclusion criteria: - mrsa cases previously identified at other chec sites - emergency, clinic, or other outpatient cases - cases re-admitted with mrsa (unless it is a different strain) healthcare-associated (ha) case definition: once the patient has been identified with mrsa, he/she will be classified as ha based on an assessment of the practitioner using the following criteria: • exposure to any healthcare setting (including long-term care facilities or clinics) in the previous months or • has been hospitalized for greater than hours" ha-mrsa can be present in people with one or more of the following healthcare-related risk factors: previous history of mrsa infection or colonization, history of surgery, hospitalization (e.g., due to chronic medical conditions), receipt of antibiotic therapy within months, presence of an invasive device at the time of admission, dialysis, older age, or residence in a long-term facility in the previous months prior to culture date. over the past two decades, due to major changes in the healthcare delivery system (e.g., treatment shift of more acute illnesses to outpatient care, homecare and long-term care facilities), patients with mrsa have been discharged into the community where spread may have occurred. in addition, with the continuing changing epidemiology of mrsa and the emergence of mrsa outside of healthcare settings, it is becoming more difficult to classify mrsa as strictly healthcare-associated or community-associated. ha-mrsa is the cause of many healthcare-associated infections (hais) including surgical site infections (ssis), ventilator associated pneumonias (vaps), central line-associated bloodstream infections(clabsis), catheter-associated urinary tract infections(cautis) and wound infections. in canadian acute-care hospitals, between - , clabsis accounted for over one-quarter of the total mrsa bloodstream infections. furthermore, during the same surveillance period, % of patients with non-bloodstream mrsa infection (e.g., surgical site, respiratory, etc.) died and % of patients with a bloodstream infection (bsi) died at days after the date of the positive culture. . . community-associated methicillin-resistant staphylococcus aureus (ca-mrsa) as per the public health agency of canada, antimicrobial resistant organisms (aro) surveillance - surveillance report for data from january , to december , , a community-associated case is defined as follows: • "has been hospitalized for less than hours and • has no previous history of the organism and • has no prior hospital or long-term care admission in the past months and • has no reported use of medical devices" (e.g., pacemakers and implantable cardiac defibrillators, hip and knee prosthetic joint, prosthetic heart valves, coronary stents, peripheral and central venous catheters, arterial catheters, etc.) ca-mrsa strains have been associated with severe skin and soft tissue infections and necrotizing pneumonias, as well as bsi, otitis media and externa, and joint infections. there are specific sub- populations with an increased risk for acquiring and spreading ca-mrsa including men who have sex with men , , sports participants , , military personnel , prisoners , children, household contacts of mrsa patients, emergency department patients, urban underserved communities, cystic fibrosis patients, people infected with human immunodeficiency virus, veterinarians, livestock handlers and pet owners. the proportion of mrsa infections identified as community-acquired mrsa (ca-mrsa) has steadily increased over time and by represented just under one-third of cases classified. in addition, in . % of mrsa infections were from blood and . % were from clinical sources other than blood. skin and soft tissue infections (ssti) represented the largest proportion ( %) of mrsa infections identified from clinical sources other than blood. furthermore, the proportion of mrsa infections (all non-blood sources) identified as ca-mrsa has steadily increased from % in to % of cases in . in canada, during the period of to , based on the data reported by the cnisp, the overall rate of mrsa in cnisp hospitals (in , fifty canadian hospitals in ten provinces reported data to cnisp) increased from . cases/ , patient-admissions in to . cases/ , patient-admissions in (figure ). figure : overall mrsa rates, canadian nosocomial infection surveillance program (cnisp) - (per , patient-admissions) ( figure was published by public health agency of canada, cnisp - results of the surveillance of methicillin resistant staphylococcus aureus, from to ) most recent mrsa surveillance results released by public health agency of canada showed that the incidence of overall mrsa ( infection and colonization) in canada has decreased since from . to . cases/ , patient- admissions in . (see figure ) ra te - pe r , pa ti en t- ad m is si on s years overall mrsa rates, cnisp - (per , patient- admissions) overall mrsa rate mrsa infection rate mrsa colonization rate figure : overall mrsa rates, canadian nosocomial infection surveillance program (cnisp) - (per , patient-admissions) (figure was created based on data published by public health agency of canada - antimicrobial resistant organisms (aro) surveillance: summary report for data from january , to december , ) the "iceberg effect" refers to the relationship between the number of mrsa infected (the smallest visible portion of the iceberg), and the number of mrsa colonized cases (the largest, underwater, and not-visible portion of the iceberg) . therefore, it has been a challenge to calculate the true overall mrsa rates and especially mrsa colonization rates when it is almost impossible to know the real number of mrsa colonized people. mrsa colonized people are asymptomatic, unaware of carrying the mrsa and their number is much higher compared to mrsa infected people. ra te -p er , p at ie nt -a dm is si on s years overall mrsa rate, cnisp - (per , patient- admissions) overall mrsa rate mrsa infection rate mrsa colonization rate . . laboratory characterization of ha-mrsa and ca-mrsa genotypes laboratory characterization has revealed distinct differences in the microbiological characteristics of ca- mrsa and ha-mrsa. , in addition to the surveillance or clinical definition, both ha- and ca- mrsa are differentiated based on strain typing of isolates as described by mcdougal et al ( ). mrsa strains generally recognised as ca-mrsa include cmrsa (usa , st , cc ) and cmrsa (usa , st , cc ). , , ha-mrsa strains are generally accepted as cmrsa (usa , st , cc ), cmrsa (usa , usa , st , cc ), cmrsa / (st or st ), cmrsa (usa , st ), and cmrsa (usa , st , cc ). , , based on cnisp data, from to , a total of , ( %) of mrsa isolates were typed by using pulse-field gel electrophoresis (pfge) ( ). the majority of strains were characterized as ha-mrsa strains. overall, the most common strain type identified was cmrsa- representing % of the typed strains, followed by cmrsa- with % of the typed strains. ca-mrsa genotypes were represented by cmrsa- and cmrsa- accounting for %, respectively % of the typed strains (figure ). figure . overall canadian mrsa strains identified in the canadian nosocomial infection surveillance program, – (figure was created based on data published by simor ae, gilbert nl, gravel d, mulvey mr, bryce e, loeb m, matlow a, mcgeer a, louie l, campbell j in canadian nosocomial infection surveillance program. methicillin-resistant staphylococcus aureus colonization and infection in canada: national surveillance and changing epidemiology, - ) however, it is important to note the change in the predominant strain type. at the beginning of the surveillance period, cmrsa- represented % of the strain types, but by it almost completely disappeared and was replaced by cmrsa- , another ha strain type. in addition, between and the proportion of ca-mrsa strains increased from % to % . from - , ca-mrsa strains were rarely documented in cnisp hospitals, but between and the cmrsa- strain was reported as the second most common mrsa strain type ( % of isolates typed) (figure ). % % % % % % pe rc en ta ge o f i so la te s pfge canadian mrsa strain overall canadian strains of mrsa in cnisp, - figure . change of the predominant canadian pulse-field gel electrophoresis mrsa isolates, identified in cnisp, during - (figure was created based on data published by simor ae, gilbert nl, gravel d, mulvey mr, bryce e, loeb m, matlow a, mcgeer a, louie l, campbell j in canadian nosocomial infection surveillance program. methicillin-resistant staphylococcus aureus colonization and infection in canada: national surveillance and changing epidemiology, - ) furthermore, as per nichol et al ( ) , between and among s. aureus isolates submitted to the canward study (a national surveillance study assessing pathogen prevalence and antimicrobial resistance in canadian hospitals) there were isolates identified as mrsa ( . %). the mrsa isolates were characterised by sequence-based typing of the staphylococcal protein a (spa) gene, and then the canadian epidemic pfge strain type were inferred from the observed spa type. of the mrsa isolates identified, ( . %) were characterised ha-mrsa, and ( . %) as ca-mrsa. as shown in figure , between and in canadian hospitals, the predominant epidemic strain type was cmrsa- accounting for . % of all mrsa isolates and . % of ha-mrsa genotypes. as % % % % % % % pe rc en ta ge o f i so la te s pfge cmrsa isolate canadian pfge mrsa isolates identified by cnisp, - - - - well, among ha-mrsa isolates the proportion of cmrsa- / isolates decreased over time from . % in to . % in . on the other hand, the ca-mrsa strain type cmrsa- and cmrsa- represented . % and . % of all mrsa isolates identified. between and , cmrsa- , the second most commonly identified epidemic type overall, increased significantly from . % to . % (figure ) . figure . molecular characterization of ca-mrsa and ha-mrsa genotypes in canadian hospitals between and (figure was created based on data published by nichol ka, adam hj, roscoe dl, golding gr, lagacé-wiens pr, hoban dj, zhanel gg; canadian antimicrobial resistance alliance in changing epidemiology of methicillin-resistant staphylococcus aureus in canada. j antimicrob chemother. may; suppl : i - i ) . . reservoirs for mrsa transmission the reservoirs for mrsa transmission in healthcare facilities (acute care, long term care and rehabilitation facilities) consist of mrsa colonized and infected patients, healthcare workers (e.g., attending physicians, residents, nurses, x-ray technicians, etc.), environmental surfaces, medical equipment in the rooms of mrsa colonized or infected patients, hospital rooms where these patients receive specialised services (e.g., ultrasound, physiotherapy , x-ray rooms, etc.) and possibly household contacts of patients colonized or infected with mrsa. . . . mrsa reservoirs in acute-care facilities patients who are colonized or infected with mrsa in a community setting or a healthcare facility are the major reservoirs of mrsa in the hospital setting. it is important to mention that the true prevalence of mrsa among hospitalised patients is not known and varies among acute-care hospitals. for example, most of us hospitals are not using active surveillance testing to identify mrsa colonized patients. furthermore, in , a study by salgado et farr demonstrated that between february and november , clinical cultures alone identified just % of the mrsa colonized patients identified during the hospital admission by active surveillance cultures. environmental surface and medical equipment contamination with mrsa is common in rooms occupied by mrsa colonized or infected patients. it is well known that mrsa survives for relatively long periods of time in the environment and is resistant to desiccation. , for example, one study found that mrsa survived up to days on plastic charts and for days on laminated tabletops. based on numerous studies, mrsa was able to contaminate various inanimate objects such as mattresses, bed linen, patient gowns, nurse's uniform, doctor's ties, tourniquets, pens, televisions, remote controls, blood pressure cuffs, infusion pumps, stethoscopes, telephones, as well as touch surfaces such as bed rails, floors, overbed tables, bed frames, bed raising panels, door handles, sinks, taps, computer key boards, bedside chairs, and light switches. healthcare workers (hcws) who may be transiently colonized with mrsa constitute additional potential reservoirs for mrsa transmission. albrich and harbarth ( ) reviewed data from published studies and determined that the average mrsa prevalence among hcws was . % ( % ci, . % - . %). furthermore, in these reviewed studies, the prevalence of mrsa among hcws varied from % to % as a result of differences in settings in which hcws' screening occurred (e.g., end vs. beginning of shift ), the hcws' occupation, study year and the method of screening. in addition, % of mrsa-colonized hcws described in the reviewed studies had developed an mrsa infection, most frequently a skin and soft tissues infection. the risk factors associated with mrsa carriage among hcws include: chronic skin diseases, recent antibiotic use, poor hand hygiene practices, high work load, close contact with patients, and working in an hospital area with high mrsa prevalence among patients. . . . mrsa reservoirs in long-term care and acute rehabilitation facilities (ltc&arfs) ltc&arfs have a higher prevalence of mrsa among their residents compared to patients of acute-care hospitals. this may be due to various patient risk factors for mrsa ( e.g., older age, chronic illnesses, numerous hospital admissions), and been transferred from acute-care hospitals. . . . mrsa reservoirs in household environments household environments include the homes of mrsa carriers. mrsa was recovered from surfaces and items within these households including sinks, tubs, countertops, faucet handles in kitchens and bathrooms, dish sponges and towels, pet food dishes, infant high-chair trays, etc. , schools, daycare centers and athletic facilities also play an important role in perpetuating the spread of ca-mrsa among households. for example, in athletic facilities, ca-mrsa has been isolated on water coolers, treatment tables, locker room shower handles, sink faucet handlers, and as well it has been identified as cause of invasive ha-mrsa infections. , close personal contact with mrsa colonized or infected patients results in mrsa acquisition by household contacts who provide healthcare and have prolonged exposure to these patients. animal reservoir, including companion animals/household pets, and animals visiting healthcare facilities, may contribute to the mrsa transmission to humans since pet therapy and personal pet visitation are now common practices in healthcare facilities. . . transmission of mrsa strains mrsa patient hand carriage represents an important factor that may affect the amount of environmental mrsa contamination. once the environment is contaminated with mrsa, this can be transiently transferred to the hcws' hands and clothing when they have direct patient contact or touch contaminated surfaces in the patient's room. as a result, the hcws can then become vectors for mrsa transmission to other patients or staff. in addition, other hospitalized patients may acquire mrsa from contact with contaminated objects, medical equipment, environmental surfaces or inhalation of aerosolized droplets from chronic nasal carriers. ca-mrsa strains are also most frequently transmitted by direct and close contact with a colonized/ infected patient or by contact with contaminated fomites used by an mrsa contaminated patient. in conclusion, the contact between mrsa colonized or infected patients with other patients, their hcws or the healthcare environment can result in transmission of mrsa, and may lead to mrsa healthcare- associated infections. mrsa infections can appear sporadically or in the setting of a hospital outbreak and are associated with increased length of hospital stay, antibiotic resistance, increased morbidity and mortality, and increased healthcare costs (in canada the direct healthcare costs attributable to mrsa alone averaged $ million in ). . social network analysis in this study, social network analysis (sna) was used to understand the underlying context and dynamics of mrsa transmission in a large tertiary acute-care hospital. it also helped to determine the influence that the connections between people (e.g., mrsa patients, roommates, hcws,) and places (i.e., patient's room) have in the transmission of mrsa in a hospital setting. the concept of "social network" was first introduced in by j.a. barnes in an article of anthropology studying the social organization of a small norwegian island parish through the various ways of interaction between the members of that society. barnes got his data by observation. he defined the concept of a "network" as a set of "points" some of them connected by "lines". it was mentioned that the "points" represented people or groups of people, and the "lines" were the interactions between them. also, barnes introduced the concept of "class network" as a network of social ties established between pairs of individuals based on kinship, friendship and acquaintance. this class network analysis showed a hierarchical organisation of the administrative (e.g., administration of the parish) and industrial groups (e.g., fishing vessels, marketing cooperatives, herring-oil factories) even though the community members regarded each other as approximately socially equal. four important characteristics of the sna are that it: ( ) provides methods to detects and interprets patterns of social connections between vertices (also named actors/nodes, see in table - definition); ( ) is based on empirical data; ( ) is highly graphical and ( ) uses mathematical and computational models. sna has three main branches: ( ) network visualization, ( ) network description and ( ) new methods around stochastic and longitudinal network analysis. , in this thesis, network visualization and network description will be used as data analysis tools. network visualization shows details on network structure and relationships in a graphic format, and is a major part of the sna. , network description involves analyses to determine: (a) the position of individuals and /or places in the network (e.g., degree centrality), (b) properties of network subgroups (e.g., dyad, k-core, clique), or (c) characteristics of the entire network (e.g., density, centralization). . . network terms & definitions to better understand the sna concepts used for data analysis in this thesis, first we need to enumerate the basic sna terms and their definitions. table . terminology and definitions commonly used in social network analysis term definition network a network is a set of vertices and a set of lines connecting pairs of vertices. a line linking two vertices represents a relationship between those vertices. graph a graph is a drawing of a network vertex/node/actor a vertex is the smallest unit of a network. it represents an individual, group, company, country, etc. (for example, in this thesis can be an mrsa case or control, a hcw, or a hospital room). (see appendix a) line/tie a line represents a relationship between two vertices in a network (e.g. friendship, kinship). a line can be directed or undirected. a directed line is called an arc while an undirected line is an edge. (see appendix a) arc an arc is an ordered pair of vertices in which the first vertex is the sender (the tail of the arc) and the second is the receiver of the line (the head of the arc). an arc points from the sender to a receiver. a b in this example of sharing information, a share information with b. b share information with c who share information with a. we have a directed network, and the vertices are c connected by arcs. edge an edge has no direction, and is represented by an unordered pair. an edge is equivalent to a bidirectional arc since it does not matter which vertex is first or second in the pair. a b in this examples of sharing information, the connections between vertices are undirected, therefore we do not know who share information with whom. the information can be c shared by either one of vertices in the pair. this is an undirected network and the vertices are linked by edges. component a component is a portion of the network in which all vertices are connected, directly or indirectly, by at least one line. by definition, each isolate is a separate component. (see appendix a) directed graph a directed graph contains one or mare arcs. undirected graph an undirected graph contains no arcs: all of its lines are edges. density density is the number of lines in a simple network, expressed as a proportion of the maximum possible number of lines. a complete network is a network with maximum density which is equivalent to - all my friends are friends with each other. adjacent two vertices are adjacent if they are connected by a line. degree in a simple undirected network, the degree of a vertex is equal to the number of vertices adjacent to this vertex: its neighbors. ego ego is an individual "focal" vertex. ego can be a person, groups, organization, etc. (see appendix a) neighborhood neighborhood is a collection of ego and all vertices (alters) with whom the ego has a connection at some path length (one-step). it includes only ego and vertices that are directly adjacent. also, it includes all the lines among all the vertices to whom the ego has a direct connection. (see appendix a) degree centrality degree centrality, a centrality measure, equals the number of ties that a vertex has with other vertices. generally, vertices with a higher degree or more connections are more central to the structure and tend to have a greater ability to influence others (i.e., in our case to transmit the mrsa infection) eigenvector eigenvector centrality, a centrality measure, is based on the principle that the importance of a vertex depends on the importance of its neighbors. therefore, a centrality vertex that has high eigenvector score is one that is adjacent to vertices that have themselves high scores. in other words, even if a vertex influences just one other vertex, which subsequently influences many other vertices (they influence still more others), then the first vertex in that chain is highly influential. geodesic path is the shortest-length path between a given pair of vertices dyad a pair of vertices and the possible line between them triad three vertices and the lines among them (nooy w., mrvar a. and batagelj v. exploratory social network analysis with pajek, cambridge university press, ; yan e. and ding y. applying centrality measures to impact analysis: a coauthorship network analysis, journal of the american society for information science and technology, ( ): - , ; borgatti s.p. centrality and network flow, social networks ( ) - robert a. hanneman and mark riddle. . introduction to social network methods. riverside, ca: university of california, riverside - published in digital form at http://faculty.ucr.edu./~hanneman/ ) . . applying sna in epidemiology in epidemiology, sna has been used as a tool to investigate, explain and comprehend structural and relational aspects of social networks or subsets of networks. , using sna as a method of analysis in epidemiology can be explained by the relation of conditionality that exists between the transmission of a disease and the nature of interactions between an individual and his environment. this means that existent relationships between people and/or places are sufficient to carry infection. on the contrary, no relationships between people and/or places mean no infection transmission. however, the infection transmission depends on the type of relationship, as well (e.g. direct contact, duration of contact). for example, in the case of a sexually transmitted disease (std) the chances of an individual to catch the disease depends on the nature of the social contacts within his network. http://faculty.ucr.edu./% ehanneman/ for over three decades social networks have been used as tools to analyse infection transmission. the first application of sna in epidemiology was a study on stds by klovdahl ( ) designed to better understand the spread of hiv. klovdahl used cdc data on personal relationships among aids patients ( initial patients diagnosed with aids from la or orange county, california, and from their named sexual partners with aids as well, living in different parts of us) to build a social network. using sna, he proved that there were personal contacts (e.g. sexual relationships) between these people that could allow transmission of an infectious agent. there were inconsistencies related to the temporal sequences of dates of symptom onset due to the difficulty in estimating the incubation period for this disease, at that time. this was followed by larger-scale studies performed in winnipeg, manitoba, canada and colorado springs, colorado, usa which continue to be important sources of information on human sexual networks and the potential transmission routes of sexually transmitted infections (stis). these studies were performed using sna showing the importance of not just human connections but the environmental/geographic context( location/fomites) in the transmission of infectious agents (e.g., sti, tuberculosis, bloodborne pathogens diseases). , - sna of infection transmission in the healthcare setting has been used to a lesser extent. in several studies, dynamic network analysis has been used as a tool to model infection transmission and to determine the effectiveness of control measures in relation to influenza , mycoplasma pneumoniae and nosocomial infection. in addition, a study of geva a. et al ( ) using sna showed that interactions among pediatric patients and hcws influenced the transmission of mrsa in a neonatal intensive care unit of a large tertiary care facility. geva a. et al used electronic health records to identify the study participants and sibship information, mrsa surveillance cultures, patient room locations, nursing assignments and then, built patient- and unit-based networks. after that, the study authors used multivariate models to quantify the risk of mrsa colonization of an uncolonized infant as result of exposure to his/her mrsa- colonized sibling. the study concluded that a mrsa-negative infant admitted in nicu at the same time with a mrsa-positive infant had a higher odds of becoming mrsa-colonized if the colonized infant is his/her sibling (the siblings were left together during the hospital stay despite their mrsa colonization status, but an unrelated patient, if mrsa uncolonized, was separated from an mrsa colonized roommate). as well, it was shown that sharing a nurse during hospital stay increased the odds of mrsa uncolonized patients of becoming colonized. . . brief overview of network analysis methods sna is a method that focuses on relationships between vertices (e.g., individuals, groups, organizations, countries) while traditional statistical analysis methods focus on the subject's attributes (e.g., variables). the advantages of using network analysis in epidemiology are very well illustrated by slattner et al ( ) in their "social network analysis in epidemiology: current trends and perspectives" study. they noted that: ( ) a network's structure provides valuable information on the dynamics of social contacts between individuals which is known to have a significant influence on how a disease is transmitted, and ( ) the network's structure does not only help to understand the underlying context of the disease's spread, but it has an important role in finding efficient intervention and awareness plans. sna in contrast to traditional statistical methods of analysis can combine the network structure with the distribution of the individual attributes (i.e., age, weight, ethnicity, etc.). furthermore, the network is time dependent since the interactions between vertices may change at each defined time unit. . . study design and data collection compared to traditional study designs in public health where data can be collected from each study participant before the entire study sample was recruited, for many network studies the whole network needs to be identified before data collection starts. for example, to study the friendship relations between students in a school classroom, all the students in that room would be identified before starting to collect network data. after that, collected data is organized in an n-by-n square matrix, and each data entry represents a relationship between a pair of vertices (e.g., friendship relation between two classmates or in this thesis a connection/relationship between mrsa case - roommate or mrsa case - attending physician). data collection in sna can be complete or bounded if all network members were identified and boundaries are clear (e.g., analysis of a substance abuse referral network), or incomplete if there are not clearly defined boundaries for network identification (e.g., elite business leaders in a community). there are two approaches to identify network boundaries: ( ) the "realist" approach, as perceived by the vertices (e.g., individuals) themselves; it corresponds to the actual social group/organization boundaries and ( ) the "nominalist" approach based on the researcher's own rules to identify network boundaries. , as john scott noted in his book, if the network's boundaries are inaccurately identified by a researcher, the social network studied will be an imperfect representation of the full network. when network analysis focuses on the relationships within a set of vertices, the network is known as one- mode network. , networks may involve more than one set of vertices, and the relationships of interest refer to the connection of vertices in one set to those in the other set (e.g., patients and the attending physicians in a hospital). , this is the case of a two-mode network. data collection methods most used in network studies are: (a) interview (face-to-face or by telephone), (b) direct observations of interactions among vectors, (c)experimental designs (e.g., a set of individuals is chosen and their interactions are observed in an experimentally controlled situation), (d) ego-centered (e.g., consists of a focal person "ego" and a set of "alters" who have connections with the "ego", and the measurements of ego-alters ties and alter-alter ties), (e) snowball sampling (e.g., the initial network has a small number of individuals who are then asked about their connections who may be included into the network. these new members of the network are approached and asked to nominate other potential network members), (f) small world (e.g., using method for networks with high clustering coefficient, and most pairs of vertices connected by short paths ), and (g) diary (e.g., asking an individual to keep a continuous record on the other people with whom he/she interacts). , in a hospital setting, the contact between patients and hcws can be studied by direct observation- but this type of data collection may be expensive, and the networks obtained lack generalizability. where available, the development of electronic medical record data represents a great opportunity of providing accurate information regarding the epidemiologic links among inpatients and hcws. the social network of a hospital is smaller and structured differently compared to a social network of an urban community. moreover, in relation to the hospital's structure, the contact patterns in the hospital are controlled by a hierarchy defined by departments, wards and rooms. also, the hospital's network includes patients, hcws and visitors. the hcws can be subdivided into different groups, such as nurses, technicians, housekeeping staff and medical doctors (e.g., residents physicians may visit more wards than nurses do and may carry pathogens from one ward to another). . . . data analysis as previously mentioned, there are three broad methods for network analysis: (a) network visualization - graphical representation of the studied networks; (b) descriptive analysis of network properties - providing important information on the position of vertices/subgroups in the network, and on the entire network structure, and (c) stochastic and longitudinal network methods - for building and testing inferential and longitudinal network models. in this thesis the first two network analysis methods will be used for data analysis. . . . network visualization with this method, network data is presented in a graphic format which facilitates its qualitative interpretation. in addition, graphical representation of the studied networks helps to better understand the data and communicate the results of the analysis. the network software used (i.e., pajek, ucinet) can display networks in different ways. for example, one display is represented by the "ring network" in which the vertices are arranged in an oval making hard to determine which vertex is more/less connected to the others. in comparison, the "energy" algorithm is used to position more connected vertices toward the center of the network which makes it easier to see the network's structure reducing overlapping of the links and vertices. figure . ring network display ring network display- vertices are arranged in oval and it cannot distinguish which vertex is more/less connected to the other vertices. figure . energy kamada-kawai displayed network using energy kamada-kawai to display the same network as in figure in this network display, the more connected vertices are positioned to the center of the network, and the overlapping of vertices and lines is reduced. . . . descriptive properties of networks analysis at the individual level identifies the position of a vertex (a vertex can be identified as a person/group of people/place/organization/country, etc.) within a network. the most commonly used measure - centrality measure - indicates the status of a vertex within the network. each centrality measure reflects a different aspect of a vertex's network location. in an undirected network (see table - terminology and definitions in sna) , a vertex's degree centrality represents the number of connections ( or lines/ties) that a vertex has with other vertices. therefore, the degree centrality shows a vertex's level of network activity or involvement. the degree centrality is the most commonly used measure of centrality. the second measure of centrality is betweenness centrality which is defined as the frequency with which a vertex is found in an intermediary position along the geodesic paths (i.e., the shortest-length path) linking pairs of other vertices. a vertex with high betweenness centrality can control relationships among other vertices. normally, this measure is used in networks having short paths between their vertices. the third measure of centrality is closeness centrality and is represented by the sum of the geodesic distances from a given vertex to all others. the fourth centrality measure, eigenvector centrality, is sensitive to the presence and/or strength of connections, and the centrality of those vertices to which the focal vertex is linked. in other words, the importance of an individual in a network depends on the importance of his/hers neighbors. as borgatti noted in , not all above mentioned centrality measures can be used when studying the spread of an infection. he argued that infection spreads by "reproducing rather than moving, it does not have targets (thus everybody can be infected), and does not take the shortest paths to the next vertex". therefore, when studying an infection transmission in a network, degree centrality and eigenvector centrality are the network measures to be used. borgatti interpreted these measures in his article ( ) as follows: degree centrality - a measure of immediate risk only (a measure of immediate influence - the ability to infect others directly or in one time period), and eigenvector centrality - a measure of long-term direct and indirect risk (based on this measure, a person's long-term risk of becoming infected is a function of the risk level of its contacts) . valente et al ( ), in their study examining correlation between network centrality measures, concluded that there is a high correlation between eigenvector centrality and degree centrality. also, they suggested that vertices with high degree centrality are not necessary the most strategically located in the network, and on the other hand, those with high eigenvector centrality are linked to well-connected vertices, thus may influence many others in the network either directly or indirectly through their connections. subgraph analysis: is used to identify and analyze subsets of vertices and their connections within the network. this method is used to determine the cohesion of groups and characteristics of dyads, triads or other subsets. this analysis can define locally dense regions within the network. one common measure used in this type of network analysis is clique. clique is defined as a maximal subset of vertices having density . , which is equivalent to all my friends are friends with each other. another cohesion measure is the k-connected component (k-core) : a maximal subset of vertices reciprocally linked to one another by at least k vertex-independent paths. network description on the overall structure of the network provides information on how connected a network is. the most common measures used for this type of network analysis are: (a) network order defined as the number of vertices (n), (b) size representing the number of network ties/connections, and (c) the network density which is the size relative to the number of possible ties/connections. . description of the ottawa hospital the ottawa hospital is a large multi-campus tertiary acute-care academic facility. in - , there were , patient admissions on , beds. . hypothesis we hypothesised that: ) it is possible to build a social network of hcws and places connected to patients colonized or infected with mrsa in a large tertiary acute-care hospital. ) there is a difference between this healthcare network and a second built network including the hcws, places and inpatients chosen as a control group in this study (see inclusion criteria). ) after building the healthcare networks, and based on the analysis of the network structure and its characteristics, we can determine the role of healthcare workers and places in the transmission of mrsa infection in a large tertiary acute-care hospital. to test this thesis's hypothesis, it was decided to define two reference periods for building the social networks. the two reference periods were outlined based on the hospital mrsa outbreak identification for each campus site, during the study period (see . data analysis). note that the reference campus outbreak periods may not have been correlated to the actual outbreak periods at toh which were declared using toh infection prevention and control case definitions and were defined by individual unit (and not by campus). . ethics approval after the thesis proposal was approved, an electronic data request form (data specification form) was submitted to the performance measurement client services at toh, and in parallel an application for ethics approval was submitted to the ottawa hospital science network - research ethics board (protocol# - h). since this study was conducted using electronic medical record data collected at toh, no associated harms and risks were identified for the participants involved. every effort was made to ensure the privacy and confidentiality of patient data by de-identifying data sets, ensuring only those directly involved in the study had access to the study data, keeping data on password protected computers in locked offices and agreeing to destroy all associated study data by deleting files and erasing hard drives when the mandatory years time frame has expired. . chapter - study design and methods . study design this is a secondary data case-control study, using individual characteristics and network structure measures, conducted at the ottawa hospital (toh) between april st, and march th, . toh is a , beds tertiary acute-care academic hospital, located on multiple campus sites. there were approximately , patient admissions during the study period. . . study population adult patients (≥ years of age) admitted to any acute-care campus of toh (civic, general and heart institute) between april st, and march st, were eligible for inclusion in the study. eligible patients were identified, based on inclusion criteria, from toh infection prevention and control program and toh data warehouse (tohdw). patients have not been contacted directly to obtain any information. no identifying patient/hcw's personal information (e.g., medical record number, names, date of birth) have been used in this study. . . inclusion criteria a. mrsa case group:  adult patients or over years old on the date of the hospital admission and  adult patients admitted to toh during the study period who underwent risk factor- based screening and were found to be mrsa positive (either colonized or infected). these patients were screened for mrsa based on certain pre-defined risk factors: admission through the emergency department, all direct transfers (hospital, long- term or chronic care facility, rehabilitation center, seniors' residence, group home, prison, homeless shelter, transfer from one toh campus to another toh campus, including the university of ottawa heart institute and the rehabilitation centre), and admission to an intensive care unit, including transfers from another unit with toh; or  adult patients admitted to toh, during the study period, who were identified mrsa positive more than hours after the hospital admission. for the purpose of this study, cases' group included patients colonized with mrsa (uninfected), and as well as those with clinically evident mrsa infection. ha- and ca- mrsa cases were classified based on toh case definitions (see both case definitions on section . . definitions) b. control group included:  adult patients or over years old on the date of the hospital admission and  adult patients admitted to toh, during the study period, who underwent risk factor- based screening and were found mrsa negative or  adult patients admitted to toh, during the study period, who shared a room with a patient who was diagnosed with mrsa during his/her hospital stay (i.e., shared period defined as the period of time between the patient admission date and the date of confirmed positive culture), and who were found mrsa negative on screening. the mrsa negative patients included into the control group were similar to the patients included into the mrsa case group since they were matched by age, gender and campus. in addition, the controls had similar opportunities for mrsa exposure since most of them were chosen among the mrsa cases' roommates. . . exclusion criteria: a. adult patients who were admitted to toh before april st, , and after march st, . b. all adult patients admitted to toh during the study period who did not undergo risk factor- based screening upon admission and did not share a room with a patient diagnosed with mrsa during his/her hospital stay. c. mrsa case group - a patient identified as mrsa positive by infection prevention and control program was excluded from the group if the methodologist could not link the patient's medical record number and/or admission date to a valid inpatient encounter in tohdw. d. control group - a patient initially identified as a control was excluded from the control group if he/she subsequently became a case at any point during the study period. . . definitions as per infection prevention and control policies and procedures at toh: mrsa colonized is a patient who is mrsa culture positive but who has no signs or symptoms of infection caused by the organism. the colonized patient can transmit the organism to the others. mrsa infected is a patient who is mrsa culture positive and who shows signs and/or symptoms of infection caused by the organism. screening: microbiology swabs ordered or collected specifically to identify mrsa colonization. risk-based screening method was defined as the process of screening patients for mrsa based on certain pre-defined high-risk factors. these factors include: : • admission through the emergency department • all direct transfers (refer to direct transfer definition below) • admission to an intensive care unit, including transfers from another unit with toh • admission to the rehabilitation centre direct transfer: patients transferred from one of the following facilities: hospital, long-term or chronic care facility, rehabilitation center, seniors' residence, group home, prison, homeless shelter. patients transferred from one toh campus to another toh campus, including the university of ottawa heart institute and the rehabilitation center, are considered direct transfers. new nosocomial case of mrsa is identified in more than hours after admission. if the previous hospitalization at toh was within months, consider nosocomial unless the patient has stayed in another healthcare facility or other hospitalization in that months period. new community case of mrsa is defined by the following: identified within first hours of admission, unless it is clear that the organism was acquired nosocomially. if patient had prior hospitalization at toh more than months ago, consider as community case. . . outcomes ) the primary outcome was to determine the feasibility of building a social network of hcws (e.g., attending physicians) and places (e.g., hospital rooms) connected to patients colonized or infected with mrsa in a large tertiary acute-care hospital. for each one of the three toh campuses, the calculated mean + *standard deviation of the number of mrsa cases for consecutive weeks since the start of the study period was used to determine the first day of an mrsa outbreak. then two reference periods were established, one two-month period before the first day of the outbreak and the second two-month period after the first day of the outbreak. for each period, we built the corresponding social network for the mrsa case group and for the control group. network visualization was used to build the healthcare networks using the social network program - pajek . the next step was to determine the network individual measures (i.e., degree centrality, eigenvector centrality), and overall network measures (i.e., size, density) for both groups by using descriptive properties of networks method. finally, we compared the calculated median degree centrality measure using a non-parametric test (wilcoxon–mann–whitney test) to find statistically significant differences between the two groups and reference periods. it is important to mention that the degree centrality measures calculated for all three toh campuses did not have a normal distribution (i.e., left skewed), therefore to compare them a non-parametric test has been chosen. (appendix d: freeman degree centrality histograms). ) the secondary outcome was to show whether the network measures (e.g., degree centrality, eigenvector centrality) can be used to determine which vertex (mrsa patient, patient room, or attending physician) was most influential in the transmission of mrsa in the hospital's network. as well, the correlation between the two calculated centrality measures was used to see if it is possible to estimate the most influential network's individual/place in the mrsa transmission. . methods . . data collection the data required for this study's analysis were obtained from toh infection prevention and control program and toh data warehouse. toh infection prevention and control program toh infection prevention and control program is an essential component of the quality patient care, aiming to reduce the risk of mrsa infection for patients, staff and visitors within toh. toh infection prevention and control program data was used to obtain a list of mrsa positive screened patients, and the mrsa positive patients (infected or colonized) identified by clinical specimens for the study period. as well, this data contained assessment of whether mrsa for each patient during the study period was hospital or community associated, based on criteria outlined previously. the ottawa hospital data warehouse (tohdw) the majority of the patient data was collected from tohdw. it contains integrated data from several source systems, and stores clinical, laboratory and administrative data that can be linked using common identification keys. tohdw has been backdated from and once weekly tohdw administrators’ abstract data from the many operational data systems of toh. the diagram of tohdw is presented in appendix b. tohdw's datasets that were used to extract data to test the hypothesis in this study are presented in table . table . the ottawa hospital data warehouse datasets and examples of variables included in these datasets tohdw dataset sample of variables health records abstracts patient demographics, date/time admissions and discharge, entry and exit codes(entry e.g. clinic, emergency; exit e.g. discharged home, dead), name of the hospital the patient was transferred from encounter patient demographics(at the time of encounter), and unique identifiers, type of encounter, start/end date/time of the encounter, inpatient details (e.g. admission route, the nursing station (ward) for this inpatient encounter, patient room number, transferring hospital, diagnosis code), discharge disposition procedures date/time and duration of the procedure, icd- code for the procedure (and procedure details), provider and anesthetist associated with the procedure service type of service (e.g., radiology, physiotherapy, lab), date/time when the service was ordered, performed and verified, date/time of service cancelation, name of the person who ordered, performed, verified and cancelled the service patient patient demographics laboratory service laboratory results for each inpatient transfers the patient service transferred to, number of days in service, code used to identify the provider being transferred to, date/time admitted to the service providers identifies the provider and service within the discharge record staffing level uniquely identifies an employee time card, uniquely identifies an employee time card entry, type of time card entry. initial entry or adjustment entry (many adjustments),date the shift was worked or started if the shift crosses midnight, time the employee shift started, time the employee shift ended, number of hours worked, occupation code facilities facility code after the mrsa cases were obtained from toh infection prevention and control program, and were linked to tohdw database to be validated (figure ), the following steps were taken to collect the data: ) identified age-group matched control group ) pulled data for encounter characteristics (see appendix c - data specification form. performance measurement and health records, dataset : cohort characteristics) ) created table for patient-room pairs using data from inpatient census history table ) retrieved data on room/unit characteristics ) created table on patient-attending provider pairs using data from inpatient census history table ) created table for unit-nurse pairs ) create table for patient-roommate pairs figure . flow diagram showing the process of linking mrsa cases to a valid inpatient encounter in tohdw based on medical record number (mrn) and admission date the steps taken to identify the matched control group were: step . create the control group - which included all patients admitted at toh, who screened negative and did not test positive at any point during the study period. (figure ) mrsa cases from infection prevention and control program april st, - march st, n = unique mrns mrns linked to tohdw n = exclusions . missing admission date (n = ) . duplicates (n = ) . unable to link to tohdw (n = ) exclusions . no valid inpatient encounter (some outpatient, medical day care, etc.) n = . could not link inpatient encounter based on admission date n = mrns linked to valid inpatient encounter in tohdw n = figure . create control group from tohdw *to determine whether the mrsa testing was done over hours after admission, it was calculated the difference between admission date (encstartdtm) and lab specimen date (labspecimendtm). ** dad: discharge abstract database dad (inpatient hospitalizations) step . identify the roommate control group from control group. this group was represented by the patients who shared room with a case during case’s “exposure period” ("onset date" was considered the date when the first mrsa positive lab test was confirmed; patient would be considered infectious before and after that date. therefore, the "exposure period" = onset date +/- days). (figure ) inpatient encounters that overlap study period n = , encounters n = , patients patients mrsa screened during study period n = , encounters n = , patients from remaining sample n = , encounters n = , patients control group : patients mrsa - screened n = , encounters n = , patients exclude: • linked mrsa + cases or • mrsa + screened with a lab test repost in tohdw n = patients exclude: mrsa + screened > hrs* after admission and not in dad** figure . create roommate controls from control group step . matching round : roommate controls to cases (figure ) in this first matching round the linked mrsa cases from toh infection prevention and control program were matched with the controls who shared a room with a case during "exposure period" by age, campus and gender. the result was mrsa case-control matched pairs. control group n = , encounters n = , patients patients who shared a room with a case at any point during encounter n = , encounters n = , patients roommate controls controls who shared a room with a case during “exposure period” n = encounters n = patients figure . matching round : roommate controls to cases step : matching round : remaining controls to remaining cases (figure ) the remaining unmatched mrsa cases, after excluding the mrsa cases from the rehab centre not abstracted in dad ( thus, there would be incomplete patient information for data analysis) were matched in round with the remaining mrsa negative patients based on same criteria as in round . figure . matching round : remaining controls to remaining cases *mrsa cases from rehabilitation centre were not included in our study. roommate controls n = patients cases n = patients : matching on a) age group ( -years) b) campus c) gender n = case control pairs remaining controls n = , patients remaining cases n = patients : matching on a) age group ( -yr) b) campus c) gender n = case control pairs excluded cases from rehab campus* n = step : final matched cohort (figure ). figure . final matched cohort the cases and controls were matched : ratio by age, campus and gender. each study group included subjects. the data elements of interest extracted from tohdw: dataset (cohort characteristics): patient id (de-identified), encounter id (de-identified), mrn (not provided to researcher, only used to link to infection control data) age, gender, postal code, encounter start/end, number of days in icu, campus, charlson comorbidity score, died, discharge disposition, outcome status( cases/control), infection source (ha /ca-mrsa), test date dataset (patient-room pairs): encounter id (de-identified), room, unit, primary activity of unit (i.e., ed, icu), start date/time, end date/time. it is important to mention that at toh, patients are admitted to private rooms or rooms with more beds (intensive care unit, acute care unit, day care surgery unit, etc). the way data were entered in tohdw for the studied period, it was not possible to link a patient with a specific place in these big units (i.e., the number of the room a patient is in). therefore, in the patient-room pairs' data collected for this : matching on a) age group ( -yr) b) campus c) gender n = case control pairs study, for many patient-room pairs the "room" actually was represented by a "unit" (e.g., j ic - intensive care unit, dcus - day care surgery unit, etc). it was considered acceptable since in many cases in these big units a complete isolation of an infected patient is practically not feasible. dataset (patient-attending provider pairs): encounter id (de-identified), attending provider id (de- identified), provider division, start date/time end date/time. dataset (patient-roommate pairs): encounter id, room/unit, roommate id (de-identified), start date/time, end date/time. dataset (unit-nurse pairs): nurse, unit, start date/time, end date/time. the data collection from tohdw was completed using statistical software (i.e., sas® . - sas institute inc, cary, nc, usa). . . quality assurance measures periodic checks to ensure data accuracy were performed throughout the data collection process. data obtained through tohdw was cleaned by removing duplicate data, checking and correcting for missing values, and running frequency distributions and summary statistics using sas® . software program (sas institute inc, cary, nc, usa). in addition, it was assumed that the data obtained from toh infection prevention and control program database was collected and entered in an appropriate manner. . data analysis after obtaining the datasets with the pairs of interest, two healthcare networks were built connecting cases (mrsa colonized and infected patients), respective controls with their roommate, rooms and attending physicians. furthermore, based on the data obtained from the tohdw, the cases, respective controls could not be connected with the attending nurses (nurses could be connected just with the units/wards in the hospital). in addition, the data related to other healthcare providers was inconsistent, therefore it was not able to link cases, respective controls with other healthcare professionals with whom the patients came in contact during their hospital stay. to build the two healthcare networks, first the "excel" files containing the pairs of interest were converted to "net" files by using "createpajek" application. then using the "net" files, the two social networks were built for each hospital (civic, general campuses, and heart institute) using pajek - (version . , march ). the steps followed to build the healthcare networks were: a) each mrsa case/control was paired with the room(s) they shared during their hospital stay at the same time. then, the mrsa case/control was similarly paired with their roommates. after that, each case/control's roommate with whom each case/control shared the hospital room(s), was chronologically connected with the corresponding room(s). finally, in the same chronological order each case/control was linked with the attending physician. since using the data for the entire period of study (one year) would produce very large social networks (which means that it would be hard to define network's boundaries, analyse and visualize it), it was decided to build smaller networks by defining their boundaries based on hospital outbreak identification. b) determined the mean+ *stdev (where stdev = standard deviation) of mrsa positive cases for every consecutive weeks, for the entire period of study, and then compared these values with the number of positive mrsa cases identified each week for the same period. furthermore, when the number of positive mrsa cases/week was found to be over the mean+ *stdev calculated for the previous three consecutive weeks, it was determined that the first day of that week represented the first day of a hospital mrsa outbreak. moreover, considering first day of a mrsa outbreak as an index day, we defined a two-month pre-outbreak period (period = period started two months before the index day and continued until the index day), and a two-month outbreak period (period = period started on the index day and was terminated two months after the index day). c) after defining the reference periods (period & ) for each studied hospital, the healthcare networks were built for mrsa cases, and controls chronologically linked with their hospital room(s), attending physician(s) and roommates using pajek. d) the healthcare networks were visualized and the measures of the overall structure of the network (i.e., the network size, density) were calculated using pajek. the descriptive properties of networks (i.e., degree centrality, eigenvector centrality) were calculated using ucinet for windows - a software for social network analysis (borgatti, s.p., everett, m.g. and freeman, l.c. , harvard, ma: analytic technologies). chi-square and t-tests were used for performing descriptive analysis of demographic data. a non- parametric test (wilcoxon - mann - whitney test) was used to compare the measures of descriptive properties of networks between the two groups and two reference periods. this statistical analysis was completed with the help of sas® . software program (sas institute inc, cary, nc, usa). for creating a dynamic animation of one of the studied toh campus's (i.e., heart institute) case-room- roommate-hcws network during the two reference periods (period & ), it was used pajek software program (version . - the only version compatible with visone) , and visone - . .x (java ) - a software program for the analysis, visualization and animation of social networks. . chapter - results . . description of the study population between april st, and march st, the ottawa hospital (toh) admitted , patients. during the same period of time, toh infection prevention and control program confirmed positive mrsa cases (colonizations and infections) at toh. after the attempt to link the mrsa positive cases' data (using patient medical record number and admission date) obtained from toh infection prevention and control program to a valid inpatient encounter in tohdw, and two case-control matching rounds ( : ratio, matched by age, campus and gender), we were able to include , patients in the study ( patients in each group) (table ). approximately % of the , studied patients were - years old, % who were over years old, % were - years old, and . % were - years old. the patient median age for both groups was years old. the median patient age at admission for ca-mrsa patients was years old, and for ha-mrsa patients was years old. in both groups, % of the study participants were male. in the mrsa case group, there was no significant statistical difference in gender distribution between ca-mrsa and ha-mrsa infection type the proportion of patients admitted from each campus for each group was as follows: % from civic campus, % from general campus and % from the heart institute (table ). there was no significant difference in the median length of patient hospital stay between the mrsa case group ( days), and the control group ( days) (p= . ). the median number of icu days spent by a patient during hospital admission showed a significant difference between the mrsa case group ( days) compared to the control group ( days) (p= . ). fifty-five ( . %) of the mrsa cases and thirty-eight ( . %) of the controls died during the studied period. there was no significant difference between the number of deaths in the two groups (p= . ). there were deaths ( %) among the icu mrsa cases and deaths ( %) among the icu controls. also, there was no significant difference between the number of icu deaths among icu mrsa cases and the number of icu deaths among icu controls (p= . ), during the study period (table ). the charlson comorbidity index showed no significant difference between the two groups (p= . ). the median value of the charlson comorbidity index for both groups was equal to (table ). in relation to the identified mrsa infection type (see toh case definitions - section . . ), % of the mrsa cases were identified as community associated mrsa infection cases, and % mrsa cases were identified as nosocomial mrsa infection cases ( % cases were classified as "unknown" since no data were provided) (table ). table . characteristics of the patients admitted to the ottawa hospital during the period of april st, - march st, variable value cases controls total p-value (n= ) (n= ) (n= , ) patient age at admission mean ± sd . ± . . ± . . median (iqr) . ( . - . ) . ( . - . ) . charlson comorbidity mean ± sd . ± . . ± . . median (iqr) . ( . - . ) . ( . - . ) . number of deaths* ( . %) ( . %) . number of icu deaths* ( . %) ( %) . campus c ( . %) ( . %) g ( . %) ( . %) hi ( . %) ( . %) patient gender f ( . %) ( . %) m ( . %) ( . %) number of icu days mean ± sd . ± . . ± . . median (iqr) . ( . - . ) . ( . - . ) . infection type c ( . %) ( . %) n ( . %) ( . %) x ( . %) ( . %) length of hospital stay mean ± sd . ± . . ± . . median (iqr) . ( . - . ) . ( . - . ) . * deaths refer to all-cause mortality during the enrollment hospitalization. campus: c - civic, g- general, hi - heart institute infection type: c - community associated mrsa infection; n - nosocomial or hospital associated mrsa infection; x - unknown infection type . primary outcome: feasibility of building a healthcare network in a large tertiary care facility based on electronic medical record data to define the reference periods (period =pre-outbreak period & period =outbreak period) for the network analysis, the index day was determined as the day when the mrsa hospital outbreak started. first, it was calculated the mean+ *stdev (where mean=moving average, and stdev=standard deviation) of mrsa positive cases identified for consecutive weeks, and then compared these values with the number mrsa cases identified each week for the entire study period (figure , , ). figure . civic campus - comparing the number of mrsa positive cases identified in one week to the mean+ *stdev of the mrsa positive cases calculated for consecutive weeks during the study period the red arrows in figure showed that at the civic campus, on the week starting on july , , the number of mrsa positive cases identified (n= ) was over the value of mean+ *stdev (equal to . ) calculated for the previous three consecutive weeks. therefore, the day of july , became the index day for civic campus. . . . . . . . . . . - a pr - - m ay - - ju n- - ju l- - a ug - - se p- - o ct - - n ov - - d ec - - ja n- - fe b- - m ar - n um be r m rs a c as es week/year civic campus - comparing mean + ( *stdev) to the week mrsa positive indentified cases mean + ( *stdev) cases figure . general campus - comparing the number of mrsa positive cases identified in one week to the mean+ *stdev of the mrsa positive cases calculated for consecutive weeks during the study period the red arrows in figure showed that at general campus, on the week starting on may , , the number of mrsa positive cases identified (n= ) was over the value of mean+ *stdev (equal to . ) calculated for the previous three consecutive weeks. therefore, the day of may , became the index day for general campus. -a pr - -m ay - -j un - -j ul - -a ug - -s ep - -o ct - -n ov - -d ec - -j an - -f eb - -m ar - n um be r o f c as es week/year general campus - comparing mean + ( *stdev) to week mrsa positive identified cases mean + ( *stdev) cases figure . heart institute - comparing the number of mrsa positive cases identified in one week to the mean+ *stdev of the mrsa positive cases calculated for consecutive weeks during the study period the red arrows in figure showed that at heart institute, on the week starting on june , , the number of mrsa positive cases identified (n= ) was over the value of mean+ *stdev (equal to . ) calculated for the previous three consecutive weeks. therefore, the day of june , became the index day for heart institute. the index day and the period & were established for the toh campuses, and they are presented in the table . -a pr - -m ay - -j un - -j ul - -a ug - -s ep - -o ct - -n ov - -d ec - -j an - -f eb - -m ar - n um be r o f c as es week/year heart institute - comparing mean + ( *stdev) to week mrsa positive identified cases mean + ( *stdev) cases table . index day and reference periods (period & ) for toh social network analysis toh campus index day period period civic campus july , may - july , july - september , general campus may , march - may , may - june , heart institute june , april - june , june - august , after defining the reference periods (period & ) for each hospital, we included in excel tables, in chronological order, the paired data on mrsa case/control - room, mrsa case/control - roommate, roommate of mrsa case/control - room, and mrsa case/control - attending physician. then, the excel files were converted to net files (createpajek application) and used to build the networks (pajek, version . ) (figures , , ). the next step was to remove the emergency room (er) from the networks since er is the first place in the hospital that most patients come in contact with when admitted, and did not provide valuable information for the analysis. after that, we rebuilt the networks. figure . civic campus - healthcare social networks for the period (pre-outbreak) and period (outbreak) a. civic campus - mrsa cases-room-roommates-attending physicians network - period (n= ) legend: - mrsa case; - room; - roommate; - attending physician b. civic campus - controls-room-roommates-attending physicians network - period (n= ) j ic f ic e no f ic e no f pa legend: - control; - room; - roommate; - attending physician civic campus: comparison of the groups' network graphs, for reference period , showed that the mrsa cases' network had a higher number of vertices and lines (also seen in table ). in addition, almost all vertices were connected in a big network component (there are just components in this network, the second and smallest component included just vertices). the most influential vertices in the network (with the highest number of connections) were rooms j ic, f ic (intensive care unit) and e no (neurologic observation unit) (see red arrows in graph .a). on the other hand, the controls' network had a lower number of vertices and lines (also seen in table ), and the vertices were not as connected as in the cases' network (the network had components). the most influential vertices in controls' network were rooms e no (neurologic observation) and f pa (post anesthesia care unit) (see red arrows in graph .b). c. civic campus - mrsa cases-room-roommates-attending physicians network - period (n= ) legend: - mrsa case; - room; - roommate; - attending physician j ic e no f pa f ic d tr d. civic campus - controls-room-roommates-attending physicians network - period (n= ) legend: - control; - room; - roommate; - attending physician civic campus: during reference period , the number of vertices and lines increased in both networks (also seen in table ). the most influential vertices in mrsa cases' network were j ic, f ic (intensive care unit), e no (neurologic observation), d tr (trauma unit), and f pa (post anesthesia care unit) (see red arrows in graph .c). moreover, the most influential vertices in controls' network were the same rooms mentioned for the mrsa cases' network (see red arrows in graph .d). each network had components, a large component including majority of the network's vertices and four smaller components at the periphery of the network counting - vertices/each component. the number of patient rooms increased during this reference period in both networks. j ic d tr f pa f ic e no figure . general campus - healthcare social networks for period & period a. general campus - mrsa cases-room-roommates-attending physicians network - period (n= ) legend: - mrsa case; - room; - roommate; - attending physician icus icun ama b. general campus - controls-roommates-attending physicians network - period (n= ) legend: - control; - room; - roommate; - attending physician general campus: both groups' network graphs for the reference period showed comparable number of vertices and lines (also seen in table ). the most influential vertices in the mrsa cases' network were icun, icus (intensive care unit) and ama (acute monitoring area) (see red arrows in graph .a). the most influential vertices in the controls' network were icun (intensive care unit), dcus (day care surgery), and ama (acute monitoring area) (see red arrows on graph .b). for both groups, the majority of the network's vertices are connected in one big component (mrsa cases' network had another small components and controls' network had another small components). icun dcus ama c. general campus - mrsa cases-roommates-attending physicians network - period (n= ) legend: - mrsa case; - room; - roommate; - attending physician d. general campus - controls-roommates-attending physicians network - period (n= ) legend: - control; - room; - roommate; - attending physician ama icun icus ama obs general campus: during reference period , the number of vertices and lines increased in both networks compared to period and are comparable (see also in table ). the most influential vertices in mrsa cases' network were icun, icus (intensive care unit), and ama (acute monitoring area) (see red arrows in graph .c). furthermore, the most influential vertices in controls' network were ama (acute monitoring area), , (patient rooms in short rehabilitation care unit and medical day care unit), and obs ( observation unit) (see red arrows in graph .d). the majority of the vertices in both networks were connected in one big network component. compared to period , the number of vertices connected in the big component increases (in period , the cases' network counted other small components and the controls' network counted other small components),the number of rooms increased during this reference period in both networks compared to period . figure . heart institute - healthcare social networks for period & period a. heart institute - mrsa cases-room-roommates-attending physicians network - period (n= ) legend: - mrsa case; - room; - roommate; - attending physician h ca hcsb hcsa b. heart institute - controls-room-roommates-attending physicians network - period (n= ) legend: - control; - room; - roommate; - attending physician heart institute: for the reference period , the mrsa cases' network had fewer vertices and lines compared to the controls' network (also see in table ). the most influential vertices in the mrsa cases' network were h ca (or ccua = cardiac care unit a), hcsa and hcsb (or csicua and csicub = cardiac surgery intensive care unit a and b) (see red arrows on graph .a). also, the most influential vertices in the controls' network h ca, h cb (or ccub = cardiac care unit b), hcsa and hcsb (see red arrows on graph .b). all vertices are connected into one big network component in both networks. hcsb h cb h ca hcsa c. heart institute - mrsa cases-room-roommates-attending physicians network - period (n= ) legend: - mrsa case; - room; - roommate; - attending physician d. heart institute - controls-room-roommates-attending physicians network - period (n= ) legend: - control; - room; - roommate; - attending physician hcsa hcsb h ca h cb hcsa hcsb h ca h cb heart institute: during reference period , the number of vertices and lines increased but are similar when compared the groups' networks. the most influential vertices in mrsa cases' network were h ca, h cb (or ccua, ccub = cardiac care unit a, cardiac care unit b) , hcsa and hcsb (or csicua and csicub = cardiac surgery icu a and b) (see red arrows in graph .c). as well, the most influential vertices in controls' network were the same rooms as those observed in mrsa cases' network, for this reference period (see red arrows in graph .d). all vertices were connected in one big network component in both networks. the number of rooms increased during this reference period, in both networks, compared to period . after visualizing the networks, it was calculated the network's overall structure measures. it was found out that there are differences related to the number of vertices in the network, the number of network's connections (lines), and the network's density (table ). table . the overall structure network measures for both study groups and reference periods as shown in table , the number of vertices (including mrsa case/control, patient room, attending physician), and the number of lines (or ties) between the vertices increased during period compared to period , for both groups and in all three toh campuses' networks. on the other hand, there is a tendency of decreasing the network's density in period compared to period for both groups, in two of toh period period civic campus cases density . . no. vertices no. lines controls density . . no. vertices no. lines general campus cases density . . no. vertices no. lines controls density . . no. vertices no. lines heart institute cases density . . no. vertices no. lines controls density . . no. vertices no. lines campuses' networks (civic and general) and also in heart institute mrsa case group's network. the network's density calculated for the heart institute's control group network actually slightly increased in period compared to period . next, the network's individual measures (i.e., degree centrality) were calculated using ucinet. the estimated median degree centrality network measures between the two reference periods for each group and between the two groups for each period were compared. (tables .a & .b) table .a. comparing the median degree centrality between reference periods for each study group and campus period period -sided p value (wilcoxon test) civic campus cases (n= ) median degree centrality . controls (n= ) median degree centrality ˂ . general campus cases (n= ) median degree centrality . controls (n= ) median degree centrality . . heart institute cases (n= ) median degree centrality . controls (n= ) median degree centrality . table .b. comparing the median degree centrality between study groups for each reference period and campus civic campus period case (n= ) controls (n= ) -sided p value (wilcoxon test) median degree centrality . period case (n= ) controls (n= ) -sided p value (wilcoxon test) median degree centrality . general campus period case (n= ) controls (n= ) -sided p value (wilcoxon test) median degree centrality . . period case (n= ) controls (n= ) -sided p value (wilcoxon test) median degree centrality . heart institute period case (n= ) controls (n= ) -sided p value (wilcoxon test) median degree centrality . period case (n= ) controls (n= ) -sided p value (wilcoxon test) median degree centrality . as shown in tables .a & .b, when we compared the median degree centrality (dc) values obtained for the two reference periods for mrsa cases, and respective controls, we found that: • for the civic and general campuses, there was a significant increase in median dc during period compared to period , for both groups. • for heart institute campus, there was no difference between the median degree centrality calculated for the two reference periods, and both groups. furthermore, when we compared the median dc between the two groups, for each reference period, the results showed: • no difference between the median dc calculated for both groups and for all three campuses in period . • in period : for the civic and general campuses - the median dc of the control group was significantly increased compared to the median dc calculated for the mrsa case group. however, for the heart institute campus - no difference was found between the median dc calculated for both groups in period . finally, to better show the network's changes over time (i.e., over the two reference periods), time-series files of the network data were created with pajek. these files were then used to produce a network dynamic animation with visone ( . .x version) it is important to mention that the time unit in this dynamic animation is one day and each one of the time series is equivalent to weeks (there are time frames for each reference period). in this dynamic animation or "movie" we followed four mrsa cases in their hospital "journey" during the two reference periods. we have chosen to follow mrsa case # , case # , case # and case # since these cases were admitted into the hospital during or before first reference period (pre-outbreak period), had a long length of hospital stay, therefore we could follow them during the two reference periods. case # was transferred to the heart institute from the general campus one week before reference period . this patient had a length of hospital stay of days, and was tested mrsa positive on may , (first week of reference period ) with ca-mrsa. during the hospital stay, case# was located in h ca (or ccua = cardiac care unit a) for days, then was moved to room# from where the patient was discharged home. case # was transferred to the heart institute from another acute-care hospital on the second week of the reference period . this patient had a length of hospital stay of days, and was tested mrsa positive on may , (third week of reference period ) with ca-mrsa. during the hospital stay, case# was located in h ca for days, then was moved to rooms hcsa (for day), hcsb (for days), (for days), h hallway (for minutes), (for days), hcsb (for days), and finally to room# (for days) from where was discharged. the patient was tested mrsa positive when moved to unit hcsb. this unit later on had been connected to new mrsa positive identified cases. moreover, at the time this patient was admitted to room h ca the case# was already in that room and tested mrsa positive. it is possible that case# was the source infection for case# since both were identified with ca-mrsa. it would have been helpful having the possibility to test if both patients were infected with the same mrsa type of strain. case# was transferred to the heart institute from toh - ambulatory care four weeks before reference period . the patient's length of hospital stay was days, and was tested mrsa positive on april , (before reference period ) with ca-mrsa. after hospital admission, case# was located in room# for days (during this period of time was tested mrsa positive), and then was moved for hours to hcsa, followed by day in room# . finally, the patient was relocated to room# where stayed for the rest of the hospital stay ( days) with a very short transfer of hours to room hcsa (after days of stay in room# ). case# was transferred to the heart institute from another acute-care hospital on the fifth week of the reference period . patient's length of hospital stay was days, and was tested mrsa positive on june , (sixth week of reference period ) with a ca-mrsa. after admission the patient was located in room# for days, then moved to room# for days, and room# where patient stayed for days. the last two patients mentioned above had very long periods of hospital stay (over days). immediate after their hospital admission, these patients were isolated in small rooms, thus reducing the number of their connections with non-infected patients. however, these patients were moved to more than one room during their hospital stay. it is interesting to mention that the rooms h ca (cardiac care unit a), hcsa and hcsb (cardiac surgery intensive care unit a and b) were present in almost all time frames. in the first four time frames (period = pre-outbreak period), these three rooms were connected with just few mrsa cases. as time is passing (see the last four time frames), the number of new mrsa cases connected with these rooms increased. this observation may be explained either by the fact that these rooms became actually a source of mrsa or the mrsa identified patients were isolated in allocated spaces in these rooms. figure . time series of heart institute cases network data heart institute - time frame (period , n= ) legend: , - mrsa case; , - room; - roommate ; - attending physician , - the mrsa cases and rooms that were followed on each time frame with explanations time frame legend: • red arrows indicate mrsa case # - connected to room h ca ( or ccua = cardiac care unit a) and room hcsb (or csicub = cardiac surgery intensive care unit b), and mrsa case # - isolated in room # • brown arrows indicate the room where the mrsa cases# and were admitted (h ca) , and room hcsb where case# was then moved. • pink arrow indicates mrsa cases # - connected to room h ca. during time frame , mrsa case # was tested positive for mrsa. • mrsa case # was already isolated to room # . this case was tested mrsa positive before time frame . • n = shows that there are vertices in the network (patients, patient rooms and attending physicians) hcsb h ca heart institute - time frame (period , n= ) legend: , - mrsa case; , - room; - roommate ; - attending physician , - the mrsa cases and rooms that were followed on each time frame with explanations time frame legend: • red arrows indicate mrsa case# - connected to room h ca, and mrsa case# - connected first to room# , then was moved to room hcsa (or csicua = cardiac surgery intensive care unit a), room# , and room# during time frame . • brown arrows indicate rooms hica, hcsa, hcsb connected to mrsa cases# , and . • pink arrow indicates mrsa case# connected to room hcsb. in this time frame case# was tested positive for mrsa. • there were vertices in this network (n= ). h ca hcsb hcsa heart institute - time frame (period , n= ) legend: , - mrsa case; , - room; - roommate ; - attending physician , - the mrsa cases and rooms that were followed on each time frame with explanations time frame legend: • red arrows indicate mrsa case# - connected to room# first, then moved to rooms hcsa, hcsb and final patient return to room# ; mrsa case# - connected to room h ca, and mrsa case # - connected to room# , then moved on h hallway (for minutes) and finally to room# . • pink arrow points to mrsa case# connected to room# . the case# was tested mrsa positive in this time frame. • brown arrows point to rooms h ca, hcsa and hcsb connected to the mrsa cases# and . • there were vertices in the network in this time frame (n= ). hcsa hcsb hcsa heart institute - time frame (period , n= ) legend: , - mrsa case; , - room; - roommate ; - attending physician , - the mrsa cases and rooms that were followed on each time frame with explanations time frame legend: • red arrows indicate mrsa cases # first connected to room h ca, was then moved to room# ; mrsa case# connected to room# ; mrsa case# connected to room# ; and mrsa case# first connected to room# , was then moved to rooms# and . • brown arrow indicates room h ca connected to mrsa case# . • there were vertices in this network (n= ) for this time frame. h ca heart institute - time frame (period , n= ) legend: , - mrsa case; , - room; - roommate ; - attending physician , - the mrsa cases and rooms that were followed on each time frame with explanations time frame legend: • red arrows indicate mrsa case# connected to room # ; mrsa case# connected to room# ; mrsa case# connected to room# then moved to room hcsb and ; mrsa case# connected to room# . • brown arrows indicate followed rooms hcsa and hcsb. there is a new case connected to room hcsa (mrsa case# ) • there were vertices in this network (n= ). hcsa hcsb heart institute - time frame (period , n= ) legend: , - mrsa case; , - room; - roommate ; - attending physician , - the mrsa cases and rooms that were followed on each time frame with explanations time frame legend: • red arrows indicate mrsa cases# connected to room# ; mrsa case# connected to room# ; mrsa case# connected to room# ; mrsa case# connected to room# • brown arrows points to followed room h ca, hcsa and hcsb which are now connected with new mrsa cases. • there were vertices in this network (n= ). hcsb hcsa h ca heart institute - time frame (period , n= ) legend: , - mrsa case; , - room; - roommate ; - attending physician , - the mrsa cases and rooms that were followed on each time frame with explanations time frame legend: • red arrows indicate mrsa cases # connected to room# , and mrsa case# connected to room# ; • brown arrows point to followed rooms h ca, hcsa and hcsb which in this time frame are connected with new mrsa cases (h ca - cases# , ; hcsa - cases# , , , , , , ; hcsb - cases# , , ). • there were vertices in this network (n= ). hcsb hcsa h ca heart institute - time frame (period , n= ) legend: , - mrsa case; , - room; - roommate ; - attending physician , - the mrsa cases and rooms that were followed on each time frame with explanations time frame legend: • red arrows indicate mrsa cases# connected to room # ; • brown arrow points to rooms h ca, hcsa and hcsb which are now connected with same cases as in previous time frame or new mrsa cases (h ca - cases# , ; hcsa - cases# , , and hcsb - cases# , ). • there were vertices in this network (n= ). hcsa h ca hcsb . secondary outcome: identifying the most influential vertices in the hospital network contributing to the mrsa transmission eigenvector centrality was the second centrality measure calculated for the mrsa case group, the hospital rooms and attending physicians connected to mrsa cases by using ucinet. the calculated values of mrsa cases' degree centrality and eigenvector centrality were compared for each reference period and campus (table - ). table . mrsa cases - ucinet results of highest freeman degree centrality and eigenvector centrality for period & - civic campus civic campus - period no. case id number degree centrality no. case id number eigenvector centrality . . . . civic campus - period no. case id number degree centrality no. case id number eigenvector centrality . . . . table . mrsa cases - ucinet results of highest freeman degree centrality and eigenvector centrality for period & - general campus general campus - period no. case id number degree centrality no. case id number eigenvector centrality . . . . . general campus - period no. case id number degree centrality no. case id number eigenvector centrality . . . . . . table . mrsa cases - ucinet results of highest freeman degree centrality and eigenvector centrality for period & - heart institute heart institute - period no. case id number degree centrality no. case id number eigenvector centrality . . . . heart institute - period no. case id number degree centrality no. case id number eigenvector centrality . . . . . . . . . . . . . . . . . . the calculated values of the degree centrality and eigenvector centrality, for the two reference periods, in tables - , showed mrsa cases with high degree centrality (dc) and eigenvector centrality (ec) (i.e., civic campus - mrsa case # for both periods; general campus - mrsa case# , period & mrsa case# , period ; heart institute - mrsa case# , period & mrsa case# , period ). on the other hand, there were mrsa cases with high degree centrality but low eigenvector centrality value (i.e., civic campus - mrsa case# , period & mrsa case# , period ; general campus - mrsa case# , period & mrsa case# , period ; heart institute - mrsa case# , period & mrsa case# , period ). next, the mrsa cases' room degree centrality and eigenvector centrality calculated values for each reference period and studied campus were compared (table - ) table . mrsa cases’ rooms - ucinet results of freeman degree centrality and eigenvector centrality for period & - civic campus civic - period no. room number degree centrality no. room number eigenvector centrality j ic j ic . e no e no . f ic f ic . f pa f pa . b am b am . civic - period no. room number degree centrality no. room number eigenvector centrality j ic j ic . e n b am . d tr f ic . f ic e n . f pa d tr . b am f pa . table . mrsa cases’ rooms - ucinet results of freeman degree centrality and eigenvector centrality for period & - general campus general campus - period no. room number degree centrality no. room number eigenvector centrality icun icun . ama ama . icus icus . . general campus - period no. room number degree centrality no. room number eigenvector centrality icun icun . icus icus . obs . . . obs . table . mrsa cases' rooms - ucinet results of freeman degree centrality and eigenvector centrality for period & - heart institute heart institute - period no. room number degree centrality no. room number eigenvector centrality h ca h ca . hcsa hcsa . hcsb hcsb . hcsc hcsc . . heart institute - period no. room number degree centrality no. room number eigenvector centrality hcsa hcsa . h cb hcsb . hcsb . h ca h pa . h pa h ca . hcsc . hcsc h cb . analyzing the data from tables - for the two reference periods, it was observed that similar to the mrsa cases, there were rooms with high degree centrality (dc) and eigenvector centrality(ec) (i.e., civic campus - room # j ic, for both periods; general campus - room# icun, for both periods; heart institute - room# h ca, period & room# hcsa, period ). also, there were rooms with high degree centrality but with very low eigenvector centrality value (i.e., civic campus - room# e n , for both periods; general campus - room# icus, period & room# , period ; heart institute - room# hcsa, period & room# h cb, period ). finally, degree centrality and eigenvector centrality measures calculated for the attending physicians connected to mrsa cases, for each campus and reference period, were compared. (table - ). table . freeman degree centrality and eigenvector centrality measures calculated for attending physicians of mrsa cases - civic campus civic campus - period no. attending physician number degree centrality no. attending physician number eigenvector centrality z z . z z . z z . z z . civic campus - period no. attending physician number degree centrality no. attending physician number eigenvector centrality z z . z z . z z . z z . z z . z z . table . freeman degree centrality and eigenvector centrality measures calculated for attending physicians of mrsa cases - general campus general campus - period no. attending physician number degree centrality no. attending physician number eigenvector centrality z z . z z . z z . z z . general campus - period no. attending physician number degree centrality no. attending physician number eigenvector centrality z z . z z . z z . z z . z z . table . freeman degree centrality and eigenvector centrality measures calculated for attending physicians of mrsa cases - heart institute heart institute - period no. attending physician number degree centrality no. attending physician number eigenvector centrality z z . z z . z z . heart institute - period no. attending physician number degree centrality no. attending physician number eigenvector centrality z z . z z . z z . z z . z z . z z . z z . as shown in tables - , the calculated eigenvector centrality values for all attending physicians who were connected to the mrsa cases during the reference periods were very low, practically closed to zero. . chapter - discussion and conclusions . discussion we have used electronic medical record data collected between april st, and march st, from toh infection prevention and control program and toh data warehouse to build two healthcare networks. the first network was built by connecting mrsa positive (colonized and infected) identified patients (the mrsa case group) with their roommates, hospital room(s) and the attending physician(s) for the two reference periods. the second network included mrsa negative screened patients at the hospital admission and mrsa negative tested patients during their hospital stay (control group) linked with their roommates, room(s), and attending physicians for the two reference periods. the mrsa cases and controls were matched : based on age, campus and gender. demographic results showed the median patient age at admission for both groups was years old. the median patient age at admission for ca-mrsa cases was years old and for ha-mrsa cases was years old. nichol et al ( ) in their study of changing mrsa epidemiology in canada between - , indicated that the median patient age for ca-mrsa ( years ) was significantly lower (p< . ) compared to the median patient age for ha-mrsa ( years). this significant difference in patient age compared to our study's results might be explained by our inclusion and collection data criteria (i.e., including in the study only adult or over years old inpatients, and excluding those cases whose records could not be linked to a valid inpatient encounter in tohdw). in addition, our cases were classified as ha- or ca-mrsa based on toh case definition and not by pfge isolate typing. our study results showed that % of mrsa cases were male, with no significant difference in the gender distribution between ca-mrsa and ha-mrsa cases. nichol et al ( ) reported that . % of the isolated mrsa strains were from male patients and there was not a significant difference between the two genotypes regarding the gender distribution. the small difference in results between the two studies may be explained by classification of mrsa infection type. in our study it was toh case definition without laboratory confirmation of the genotype as in nichol et al ( ) study. based on data collected for our study, there was no significant difference between the median length of hospital stay (los) for the mrsa cases group (los= days) and the control group (los= days). on the other hand, the median number of days spent in icu by mrsa cases ( days) was significantly lower compared to the median number of days spent by the patients in control group ( days). on the reviewed literature, the median los for mrsa patients can vary between and days. datta et huang ( ) found that the median los among mrsa inpatient was days. potashman et al ( ) examined los in canada among patients with acute bacterial skin and skin structure infection caused by mrsa and found that in ontario the median los was . days. cosgrove et al ( ) concluded that the median length of hospitalization for mrsa bacteremia patients was days. ben-david et al ( ) showed that icu mrsa bloodstream infection patients had a higher median length of stay after infection - . days. sligl et al ( ) determined that the median lengths of stay for icu mrsa patients were days in icu and days in-hospital. the reasons for the difference between los from our study and the previously mentioned studies might be the study inclusion criteria which excluded younger people, the type of mrsa infection (i.e., skin infection, bloodstream infection), the severity of the infection, and cases' comorbidities. in other words, our study included people with all types of mrsa and not only bloodstream infection, for example. in our study, there were deaths ( . %) among the mrsa cases and deaths ( . %) among the controls showing no significant difference between the two groups. moreover, among the icu cases, there were deaths ( %) among the icu mrsa cases and deaths ( %) among the icu control patients with no significant difference in between the two groups. datta et huang ( ) found deaths ( %) among mrsa positive-culture identified patients during the studied period. hanberger et al ( ) obtained an icu mortality rate for mrsa patients of . %, and the correspondent hospital mortality rate was . %. our study results showed for mrsa cases a lower hospital mortality rate, and a similar icu mortality rate compared to the studies reviewed. reasons for the lower mortality in our study could be due to differences in the canadian health care system and /or practices. furthermore, we compared the patient median charlson comorbidity index between the groups. the median value of charlson comorbidity index was equal to for each group. mcgregor et al ( ) used the charlson comorbidity index to assess the comorbidity-attributable risk of nosocomial infection with mrsa, and found a similar value of for the median charlson comorbidity index for the mrsa cases. based on the data provided by toh infection prevention and control program, % mrsa cases were identified as ca- mrsa, % mrsa cases as ha-mrsa, and . % cases as "unknown". identifying the mrsa cases in our study by toh case definition is the main reason of not being able to compare our results with phac's latest published patient data which used laboratory identification of mrsa genotype in cnisp hospitals. it is interesting to mention that when we determined the reference periods for data analysis, we could not establish a pattern/seasonality in mrsa infection outbreak onset in the studied toh campuses. as it was indicated before, the mrsa cases' data were obtained from toh infection prevention and control program. at toh the mrsa outbreaks have been identified at the unit level (not campus level). it is possible that our identification of the index data (start of outbreak) for each campus would not have been correlated with outbreaks that may actually have been ongoing at the time on a given unit. social network analysis has been used in epidemiology as a tool to characterize the infection transmission in sexually transmitted diseases (stds) , , tuberculosis and to identify bloodborne pathogen transmission among injection drug users ; to model infection transmission - ; to model community- based health problems related to flu , obesity and stds , and as well, to a lesser frequency, to model infection in a hospital setting - , . we have found only one study by geva et al ( ) that has used network analysis and electronic medical records data to build a healthcare network connecting patient, roommate and attending nurse to show the spread of mrsa in a large tertiary nicu. our study's primary outcome was to demonstrate the feasibility of building a network of healthcare providers (i.e., attending physicians) and places (i.e., patient room) which are connected to patients colonized or infected with mrsa in a large tertiary care facility. we were able to build the healthcare network using electronic medical records data that were then entered into a visualization network software program (i.e., pajek). after that, we measured overall network measures (i.e., size, density) and two individual network measures for both networks (i.e., degree centrality and eigenvector centrality). finally, we compared the median degree centrality measure between the groups and reference periods to determine if there are significant differences. using the network visualization method (figures - , in chapter - results section), we were able to conclude that for each one of the study group, there were visible differences between the network's structure when compared for the two reference periods, and each toh campus. in period , the networks had an increased number of vertices (representing mrsa cases/controls, roommates, rooms and attending physicians) and lines (representing connections between pairs of vertices), and the networks were more dense in the central area compared to their periphery. these network visible changes in the number of vertices, lines and density were supported by the actual overall structure network measures (i.e., network: order, size and density) calculation. referring to the overall structure network measures (table , in chapter - results section), it was observed that the number of vertices and lines increased in reference period compared to period for both groups and each studied campus. the increase in the number of vertices and lines during the reference period (outbreak) may be explained by increasing the number of rooms (represented by vertices) to isolate the increasing number of mrsa cases and moving the cases' roommates to other rooms to prevent the mrsa spread. also, the network density measured for period showed tendency to decrease in value compared to period which is in concurrence with what is known about this network measure. de nooy et al in their book "exploratory network analysis with pajek"( cambridge university press, ) noted that the network density and network size are inversely related: "when the network increases in size, the lower the density becomes since the number of possible lines increases rapidly with the number of the vertices in the network while the number of lines each vertex can maintain is limited". in conclusion, the tendency in reducing the network density in reference period indicated an increase in network size (which was represented by the increase in the number of vertices and number of network's lines/connections). the next step was to compare the calculated median degree centrality (defined as the number of lines/connections a vertex has with other vertices) for both groups' networks, and for the two reference periods. first, when comparing each group's median degree centrality for both reference periods, it was determined that there was a significant increase in median degree centrality in period compared to period for both groups at civic and general campus but no difference in median degree centrality between the two reference periods for both groups at heart institute campus. for civic and general campus, the increase in median degree centrality in period compared to period , may be explained by the increasing number of mrsa cases, hospital rooms occupied by patients, and as well by moving patients out of the rooms where the mrsa spread was occurring (mrsa cases to be isolated and the roommates moved to clean, non-contaminated rooms) , which increased the number of connections for those patients (especially for the roommates of the mrsa cases). for the heart institute, both groups, the possible reason of not having a significant difference between the median degree centrality results, for the two reference periods, might be the fact that the number of network's connections did not change during reference period possibly due to the initial admission of these mrsa cases/controls in private rooms thus isolating the mrsa cases from the beginning. second, comparing the median degree centrality between the groups for period , there was no difference between the two groups for all three toh campuses. furthermore, for period there was a significant decrease in median degree centrality for mrsa case group compared to median degree centrality of control group for civic and general campus but no difference between these measures for heart institute campus. this decrease in median degree centrality for the civic and general campus for period may be explained by the fact that during an outbreak the mrsa cases are isolated; therefore their number of connections with other people is drastically reduced. on the other hand, for heart institute, based on the results obtained, there was no significant difference between the median degree centrality obtained for period and . therefore, the number of connections between the network's vertices stays the same in both periods. heart institute campus is a small facility, with many private rooms, thus it is possible that the mrsa cases were isolated, from hospital admission to discharge, reducing the number of connections with other patients and/or moving to other rooms. to determine the most influential vertices for the mrsa transmission in a hospital setting, degree centrality and eigenvector centrality calculated for each toh campus's mrsa case group and the two reference periods were compared. based on the results, it was concluded that the most influential individuals and places in the network are those with high degree centrality, and high eigenvector centrality. it was hypothesized that a vertex (individual or place) with high degree centrality would most likely transmit the mrsa bacterium if it has numerous connections with other vertices (individual or place) in the network. also, it was speculated that those places or people which do not have many links themselves, but whose neighbours are very well connected, were also key in mrsa transmission. based on the results, the two measures were highly correlated. to determine the most influential vertices in the networks by comparing the two centrality measures, we stratified by mrsa cases, place (patient room) and physicians. in our networks, comparing the number of connections that a vertex can have, we determined that the place (for example, intensive care unit) had the highest degree centrality, followed by mrsa cases (there were cases with over days hospital stay, thus increased number of connections during that period), and physicians had the lowest degree centrality (highest degree centrality found for physician was ). for all toh campuses, based on the two calculated centrality measures, the top - most influential mrsa cases were generally the same but sometimes the order was different. eigenvector centrality did not add any new highly central person, thus in this particular instance could not be found the value of adding this measure. similar results were obtained when compared the two centrality measures for the patient rooms, for all studied campuses. however, there was not a correlation between the two centrality measures calculated for the physicians. in conclusion, based on our results, it was possible to find patients and rooms that may be considered "influential" in the hospital network, in mrsa transmission during the study period. even though, there were attending physicians that had a high degree centrality (i.e., z - dc= ), all of them had a very low eigenvector centrality (i.e., zero or close to zero). these findings may be explained by the fact that physicians were connected with very small number of patients (highest degree centrality for physicians was ), and majority of these patients were not very well connected (not influential) in the network. moreover, based on our results, there is the chance that attending physicians were a potential vector of mrsa transmission for a limited period of time (there was no one physician identified who was connected with mrsa cases in both reference periods). to better illustrate the importance of certain vertices in the mrsa infection transmission in a hospital setting, we created a dynamic animation of the heart institute mrsa cases' network for the two reference periods. four patients and three places were chosen to be followed during the reference periods in this "movie". the mrsa cases chosen to be followed were patients with an increased length of hospital stay (e.g., over days), admitted into the hospital during the pre-outbreak period/before this period, and had first mrsa positive lab test report confirmed during the pre-outbreak period/before it. the places chosen were included in the cases' network starting pre-outbreak period and they were connected with the chosen mrsa cases. the dynamic animation showed that certain individuals (e.g., mrsa case # ) and places (e.g., h ca, hcsa, hcsb) may be considered as potential sources of mrsa transmission during the reference periods. finally, based on the study's results it can be concluded that it is feasible to build a social network of healthcare workers and places connected to mrsa patients in a large tertiary care hospital based on electronic medical records data. the network changes were supported by known hospital patient movements after outbreak onset (e.g., moving mrsa positive cases and their roommates to other rooms). in addition, the network measures (e.g., network size, density, degree centrality) reflected network changes during the outbreak. also, we were able to identify individuals and places that might be the sources for the mrsa spread in the large tertiary acute-care hospital. moreover, the network measures defining the most influential person and place in the network were highly correlated. however, it was not possible to determine the healthcare workers role in the mrsa transmission in the hospital's network due to limitations in data collection (e.g., not all healthcare workers included in the network), and the network measures chosen for analysis (e.g., eigenvector centrality). . . limitations there were several limitations with the social network analysis (sna) in this study. first major challenge for this analysis was gathering accurate and complete data for building the networks. initially, we planned to include into the network not just the patient, patient room(s), patient roommate(s) and attending physician(s) but all healthcare providers (i.e., resident physicians, nurse, x-ray technician, etc) with whom the patient had encounter(s) and the other places visited by patient during the hospital stay. part of this data was not captured into tohdw and part of it could not be collected. however, even though the healthcare networks built in this study did not include all the individuals and places, we consider that our results are valuable. the social networks constructed for our purpose may have been more robust had data been available from a fully integrated hospital electronic medical records in which documentation of healthcare providers and details of other patient interactions would be more accurate, more comprehensive, and perhaps more readily extractable. the second major challenge was the absence of well defined network measures to be used in characterizing the mrsa transmission in a healthcare network, especially in a hospital setting network. we have chosen the two network individual measures based on the best literature available. the third limitation was the "rigid" way of collecting data for the part of the network's vertices (mrsa patients, and their roommates). we were not able to show in our networks patient's connections (i.e., transfer) between the three campuses - part of toh. as well, we were not able to show in our networks if a roommate who came in contact with an mrsa case became an mrsa case later on, as well. fourth, in this study we did not include a subgraph analysis which might be provided additional valuable information to support our primary outcome. since this was a feasibility study, we considered using just the visualization and network descriptive properties analysis methods. finally, it was hard to interpret the sna results combined with the traditional statistical analysis methods (i.e., non-parametric tests) since to our knowledge, based on the literature reviewed, there are no other reference studies to be used to compare to our study results. . conclusions this study showed that social network analysis (sna) can be used to build a healthcare network in a hospital setting based on electronic medical records data. even though our networks did not include all the individuals with whom the patients had interactions during their hospital stay, we proved that sna can be a useful epidemiological tool that can help to better understand the dynamic transmission of mrsa in a hospital setting. being able to identify the individuals and places in the hospital that may facilitate the mrsa spread can assist the hospital's infection prevention and control program in finding the right targets for applying or enhancing existing preventive measures (i.e., hand washing, decolonization, room disinfection, etc) with the goal of reducing mrsa transmission. in addition, visualization and animation of a network is a very efficient way of representing the information about the relations among individuals and places in a hospital's network. further study using sna in real time is required in order to demonstrate whether this method can augment current practices for outbreak management, and minimize the impact of an infectious disease outbreak within a healthcare setting. this thesis represents an important contribution to the current literature as it brings valuable knowledge on building a healthcare network based on electronic medical records data in a hospital setting (i.e., large tertiary acute-care facility). since current literature lacks studies testing sna in a hospital setting by using electronic medical records data, further and in more depth research is required to verify/dispute these study findings. we have in mind interesting future projects to test sna including ( ) continuing to explore the data obtained from tohdw (i.e., to do a subgroup analysis, try to connect the nurses to existing networks, finding new network measures that can help define different aspects of mrsa transmission), ( ) finding more applications for network visualization and animation in infectious disease epidemiology, and ( ) exploring the use of sna in representing mrsa genotype circulating in a hospital setting or comparing their circulation in different areas of the country or in different parts of the word. appendix a network terminology edge, line, tie node, actor, vertex component component component is a graph or part thereof in which all the nodes are connected by a path o any length isolate node, actor, vertexnode, actor, vertexnode, actor, vertex appendix b diagram of the ottawa hospital data warehouse appendix c data specification form appendix d freeman degree centrality histograms references . cimolai n. methicillin-resistant staphylococcus aureus in canada: a historical perspective and lessons learned. rev. can.j. microbiol. : - , ( ) . mayhall, c glen. hospital epidemiology and infectious control. th edition. lippincott williams & wilkins, . kuehnert mj, kruszon-moran d, hill ha, et al. prevalence 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: - . potashman m.h., stokes m., liu j., lawrence r., harris l. examination of hospital length of stay in canada among patients with acute bacterial skin and skin structure infection caused by methicillin-resistant staphylococcus aureus. infection and drug resistance : - http://www.worldclasscare.ca/ /at-a-glance/% our-facility http://mrvar.fdv.uni-lj.si/pajek/ http://mrvar.fdv.uni-lj.si/pajek/ https://www.researchgate.net/researcher/ _c_van_walraven https://sites.google.com/site/ucinetsoftware/downloads http://www.leydesdorff.net/visone/index.htm . cosgrove se, qi y, kaye ks, harbarth s, karchmer aw, carmeli y. the impact of methicillin resistance in staphylococcus aureus bacteremia on patient outcomes: mortality, length of stay, and hospital charges. infect control hosp epidemiol. feb; ( ): - . . ben-david d, novikov i, mermel la. are there differences in hospital cost between patients with nosocomial methicillin-resistant staphylococcus aureus bloodstream infection and those with methicillin-susceptible s. aureus bloodstream infection? infect control hosp epidemiol. may; ( ): - . . w sligl, g taylor, rtn gibney, r rennie, l chui. methicillin- resistant staphylococcus aureus in a canadian intensive care unit: delays in initiating effective therapy due to the low prevalence of infection. can j infect dis med microbiol ; ( ): - . . hanberger h, walther s, leone m, barie ps, rello j, lipman j, marshall jc, anzueto a, sakr y, pickkers p, felleiter p, engoren m, vincent jl. increased mortality associated with methicillin-resistant staphylococcus aureus (mrsa) infection in the intensive care unit: results from the epic ii study. int j antimicrob agents., oct; ( ): - . mcgregor jc, kim pw, perencevich en, bradham dd, furuno jp, kaye ks, fink jc, langenberg p, roghmann mc, harris ad. utility of the chronic disease score and charlson comorbidity index as comorbidity measures for use in epidemiologic studies of antibiotic- resistant organisms. am j epidemiol ; : - . cook vj, sun sj, tapia j, muth sq, argüello df, lewis bl, rothenberg rb, mcelroy pd. transmission network analysis in tuberculosis contact investigations. the journal of infectious diseases ; : – . eubank s, guclu h, kumar vsa, et al. modelling disease outbreaks in realistic urban social networks. nature ; : – . . christley rm. infection in social networks: using network analysis to identify high-risk individuals. am j epidemiol ; : – . . lee by, mcglone sm, wong kf, yilmaz ls, avery tr, song y, christie r, eubank s, brown st, epstein jm, parker ji, burke ds, platt r, huang ss. modeling the spread of methicillin- resistant staphylococcus aureus (mrsa) outbreaks throughout the hospitals in orange county, california. . infect control hosp epidemiol. june ; ( ): – . bisset k, feng x, yardi s, et al. modeling interaction between individuals, social networks, and public policy to support public health epidemiology. in: rossetti md, hill rr, johansson b, dunkin a, ingalls rg, eds. austin, texas; : – . proceedings of the winter simulation conference. . ogilvie g. incorporating a social networking approach to enhance contact tracing in a heterosexual outbreak of syphilis. sex transm infect ; : – . http://www.ncbi.nlm.nih.gov/pubmed/?term=cosgrove% se% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=qi% y% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=kaye% ks% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=harbarth% s% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=karchmer% aw% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=carmeli% y% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/ http://www.ncbi.nlm.nih.gov/pubmed/?term=ben-david% d% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=novikov% i% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=mermel% la% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/ http://www.ncbi.nlm.nih.gov/pubmed/ http://www.ncbi.nlm.nih.gov/pubmed/?term=hanberger% h% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=walther% s% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=leone% m% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=barie% ps% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=rello% j% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=lipman% j% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=marshall% jc% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=anzueto% a% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=sakr% y% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=sakr% y% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=pickkers% p% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=felleiter% p% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=engoren% m% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/?term=vincent% jl% bauthor% d&cauthor=true&cauthor_uid= http://www.ncbi.nlm.nih.gov/pubmed/ . de nooy w, mrvar a, batagelj. exploratory network analysis with pajek. cambridge university press . public health agency of canada. results of the surveillance of methicillin resistant staphylococcus aureus, from to . retrieved on august , from: http://www.phac-aspc.gc.ca/nois-sinp/projects/res /index-eng.php#a . wylie jl, shah l, jolly a. incorporating geographic settings into a social network analysis of injection drug use and bloodborne pathogen prevalence. health place. sep; ( ): - http://www.phac-aspc.gc.ca/nois-sinp/projects/res /index-eng.php#a health enhancement and companion animal ownership aimnu. rev. public health %. : - copyrighi by aniiual reviews inc. all rights reserved health enhancement and companion animal ownership alan m . beck' and n. marshall meyers 'school of veterinary medicine, purdue university west lafayette, indiana - and pet industry joint advisory council, th street, n.w., washington, d.c. key words: animals interaction, pets, epidemiology abstract the relationship between people and companion animals, on the one hand, explains the bites and zoonotic diseases that occur among those with companion animals and, on the other hand, appears to enhance the psychological and physi- ological well-being of many people. presently, no less than % of households in the united states have animals, typical of developed countries around the world. it is well documented that people denied human contact do not thrive well. all indications are that companion animals play the role of a family member, often a member with the most desired attributes. animals play special roles for children, aiding the teaching of nurturing behavior and appreciation of nonverbal communication. ordinary interactions with animals can reduce blood pressure and alter survival after a heart attack. for some, pets increase the opportunities to meet people, while for others pets permit them to be alone without being lonely. introduction in , no less that % o f u.s. households ( million) have companion animals and more than half o f these owners have more than one animal ( ). in addition to animals that live in the home, % of the households own an average of . horses f o r a horse population of . million, down, in , from . million horses four years earlier ( ). in australia, approximately % o f the . million households have one or more pets; % of the households have either a dog or a cat ( ). examples of dog, cat, andor bird ownership in european households include belgium ( %), france ( %), netherlands ( %), britain ( %), italy ( %), germany (west) ( %), ireland ( %), and f o r all european countries surveyed ( %) - - $ .oo annual reviews www.annualreviews.org/aronline a nn u. r ev . p ub li c. h ea lt h. . : - . d ow nl oa de d fr om a rj ou rn al s. an nu al re vi ew s. or g by u ni ve rs it y of c ol or ad o - d en ve r on / / . f or p er so na l us e on ly . http://www.annualreviews.org/aronline beck & meyers table u.s. animal ownership and population estimates, species dogs cats caged birds small animals reptiles freshwater fish marine fish total households with at least one animal (percent) estimated population of species (millions) . . . . . . . . . . . . * . * . * . * . ‘unpublished industty data and u.s. fish and wildlife sewice import data indicate subslantially greater populations. for example, current iguana inipons approximate , animals annually; domestic femt population estimated at million animals; reptiles are the fastest growing area with more than million mptiles imported annually. source: refemnces , , . ( ). all existing cultures keep pets, although the favorite species vary. the sheer numbers of pet animals is only one facet of the “pet phenomenon”; one also has to appreciate who are the benefactors of the “pet experience” ( ). as clearly demonstrated by the data, companion pet ownership is neither rare nor random; it is an integral part of society (see table ). changing social attitudes toward companion pets, along with changing lifestyles, influence decisions regarding ownership. major demographic trends, notably smaller households, aging populations, coupled with increasingly hec- tic lifestyles and reduced leisure time, are altering pet population demograph- ics. while more u.s. households own dogs than any other pet, the number of households with a dog or cat is declining ( ). conversely, ownership of birds, small animals, reptiles, and freshwater fish is increasing ( ). in the united states, the people who associate with pets tend to be younger than the general population; dogs, cats, and small mammals are far more common in families that have children. for instance, while young and mid- dle-aged people without children compose . % and . %, respectively, of all u.s. households, only . % and . % of these households, respectively, have any pet, which is less than expected. however, young and middle-aged parents with children at home compose . % and . % of all households, and of these . % and . %, respectively, have a pet-more than expected ( ). it is believed the same general pattern exists among european countries ( ). children with pets in their homes enjoy more leisure activities and work not related with school than their counterparts. pets are a common and relatively annual reviews www.annualreviews.org/aronline a nn u. r ev . p ub li c. h ea lt h. . : - . d ow nl oa de d fr om a rj ou rn al s. an nu al re vi ew s. or g by u ni ve rs it y of c ol or ad o - d en ve r on / / . f or p er so na l us e on ly . http://www.annualreviews.org/aronline companion animals and health important feature of children’s social network ( ). children also learn important values and attitudes from animals. by preschool, children can appreciate the differences between dogs, cats, puppies, and kittens. they begin to understand the role of the adult animals as caregivers for baby animals. boys as they mature usually increase their knowledge of and caring for animals, while there is typically a decline in their interest and care. for human infants ( ). boys, in particular, may be helped to understand the importance of nurturing by watching pet behaviors and by interacting with their pets. pets are nonjudgmental in their love and facilitate a child’s learning about responsibility. there is even evidence that the mere presence of animals positively alters children’s attitudes about themselves and increases their ability to relate to others ( , ). animals as varied as dogs, birds, and spiders facilitate social interaction and are catalysts for social and verbal interaction. live animals are focal points of interest; toy animals do not hold a child’s interest in the same degree ( ). animals are perceived to be especially valued as companions for older adults ( , , , , , ). animals may replace children who have grown and moved away or perhaps those who were never born. they may afford oppor- tunities for an increase of human-to-human social interaction and, finally, they may permit older adults to live alone without being lonely. various studies have found that the household pet is perceived to be a member of the family, sharing many of the attributes of a favored family member. it is typical to talk to the animal as if it were a person. carrying its photograph and sharing a bedroom are also within the norm ( ). while nearly half of adults confide in their pet, more than % of adolescents do so ( , , ). at the very least, interaction with animals positively influences transient physiological states, resulting in improved morale. the impact may be medi- ated directly, involving physiological functions like blood pressure, or by influencing the person’s psychological well-being (e.g. improving morale and lessening risky behaviors) or psychosocial interactions with others. besides immediate changes in blood pressure and feelings of well-being, there appear to be long-term effects of animal interaction, most notably influencing the attitudes and behaviors of young children. ‘the basis for the positive effect of health and well-being resulting from the interactions with a pet has come to be known as the companion-animal bond or the human-companion animal bond” ( ). preserving the bond between people and their animals, like en- couraging good nutrition and exercise, appears to be in the best interests of those concerned with public health. epidemiological findings there is a long history of using animals as sentinels for humans at risk. “birds and mice may be used to detect carbon monoxide, because they are much more sensitive to the poisonous action of the gas than are men” ( ). annual reviews www.annualreviews.org/aronline a nn u. r ev . p ub li c. h ea lt h. . : - . d ow nl oa de d fr om a rj ou rn al s. an nu al re vi ew s. or g by u ni ve rs it y of c ol or ad o - d en ve r on / / . f or p er so na l us e on ly . http://www.annualreviews.org/aronline beck & meyers epidemiological studies of pet animals with spontaneously occumng disease could serve as sentinels and supplement human epidemiological research ( ). compared with humans, animal diseases have a shorter latency after exposure and occur with less confounding factors, such as occupational or self-selected exposures like workplace pollutants or smoking tobacco. in contrast to labo- ratory experiments, spontaneous tumors in pets reflect natural exposures to a wide variety of environmental carcinogens; pets could therefore be sentinels for the humans that share the home ( , ). companion animals may receive detailed physical evaluations comparable to those of their owners. the veterinary community stands ready to be part of the human health research team, but for the most part is rarely asked to participate. companion animals are an unrecognized alternative to study many of the health problems facing people today ( ). while there is no clearly identified single explanation for the positive effect pets have on their owners, there is growing epidemiologic evidence that people who feel an attachment for nature ( ) or for companion animals have lessened risks of disease and disease processes compared with people without such experiences ( ). it is well documented that people denied good human contact and interaction do not thrive well ( ). one way people can be protected from the ravages of loneliness is through animal companionship. a report first documented the value of pet ownership. a study of people hospitalized after a heart attack found that ownership of any animal correlated with improved survival: % of those who owned pets were alive after the first year compared with % of those who did not own any animal. a discriminate analysis demonstrated that pet ownership accounted for - % of the variance ( ). although - % may seem small, the impact is significant and cost effective considering the frequency of heart disease. a more recent study of the benefits of interactions with animals found that pet owners had reductions in some common risk factors for cardiovascular disease, lower systolic blood pressures, plasma cholesterol, and triglyceride values ( ). socioeconomic profiles of the two groups were very similar and although pet owners engaged in more exercise, they also ate more meat and “take-out” foods. physiological effects differences were observed in the way pet owners talk to their animals by species ( , ); these are influenced by the handling needs of the animals and social stereotypes, but people find comfort in talking to their animals ( , ). unlike talking to other humans, people experience a decrease of blood pressure talking to pets, indicating that they are more relaxed than with people ( , , ). even in the presence of unfamiliar dogs, people experience a temporary annual reviews www.annualreviews.org/aronline a nn u. r ev . p ub li c. h ea lt h. . : - . d ow nl oa de d fr om a rj ou rn al s. an nu al re vi ew s. or g by u ni ve rs it y of c ol or ad o - d en ve r on / / . f or p er so na l us e on ly . http://www.annualreviews.org/aronline companion animals and health decrease in blood pressure ( ). blood pressure also decreases for people with normal pressures and those with hypertension when watching fish in a standard aquarium; systolic and diastolic levels for hypertensive subjects often fall within normal ranges. the decreased physiological arousal indicated by the reduction of blood pressure is associated with stereotypical changes in facial expression and vocal pattern; the face becomes more relaxed with a decrease in muscle tension, especially around the eyes ( ), and subjects talking to their companion dogs, cats, and birds talk more slowly and with a more relaxed mode ( ), which, in itself, tends to reduce blood pressure. psychologicavsocial egects it has been hypothesized that pet ownership improves survival because i t influences psychosocial risk factors that lessen the risk of coronary heart disease ( ). the general tendency to overestimate the importance of personal factors relative to environmental considerations in making judgments about a person or situation is well recognized and has been named “the fundamental attribution error” ( a, b, ). a good example is that people perceive others observed in the company of animals more positively and with more favorable attributes than observed without animals present. this “fundamental attribution error” occurs when people are observed live or i n photographs ( ). our experimental observations of normal and handicapped subjects in public situations, and anecdotal accounts of the behavior of politicians, suggest that the presence of pet animals improves the social attractiveness of human subjects. there may also be less dramatic effects from pet ownership than increasing survival rates or reducing anxiety. serpell ( ) reported that dog owners experienced fewer minor health problems and increased the number and du- rations of their recreational walks. the effects persisted over the ten-month study period and there was no clear explanation for the results. many naturally occurring events are enhanced by animal companionship. people walking with their dog experience more social contact and longer conversations than when walking alone ( ). even rabbits and turtles can encourage approaches by other people and stimulate conversations between children and unfamiliar adults in a community park setting ( ). wilson ( ) reported that companion animals alleviate anxiety and relax college students of all ages and races. probably the most conclusive study of the stress-managing value of animal interaction used subjects who were scheduled for molar extractions at a school of dental medicine. people who contemplated an aquarium underwent dental surgery very much like those who were hypnotized prior to the procedure ( ). although measuring the anxiolytic effect of a pet on a human companion is not a simple task, there appears to be a real effect ( ). annual reviews www.annualreviews.org/aronline a nn u. r ev . p ub li c. h ea lt h. . : - . d ow nl oa de d fr om a rj ou rn al s. an nu al re vi ew s. or g by u ni ve rs it y of c ol or ad o - d en ve r on / / . f or p er so na l us e on ly . http://www.annualreviews.org/aronline beck & meyers companion animals could have a positive impact on societal health. katcher & wilkins ( ) used carefully designed educational programs structured around animal contact with children who had attention-deficit hyperactive disorders (adhd) and defiant disorders (cd). the children in the animal contact groups had better attendance and improved measurements in a variety of knowledge and skills objectives. the children whose educational experiences included animal contact exhibited significantly less antisocial and violent behavior. abusing animals and abusing other humans are related behaviors ( , ). prisoners with crimes involving aggression to others are statistically more likely to have a history of multiple acts of cruelty to animals than noncriminals or those whose crimes did not involve violence ( ). nearly a century ago, sigmund freud ( ) suggested that clinicians attend to “children who are distinguished by evincing especial cruelty to animals and playmates,” but it was not until that cruelty to animals was added to the list of diagnostic criteria for conduct disorders in the diagnostic and statistical manual of mental disorder, rd revised (dsm-iii-r). if being cruel to animals is associated with being cruel to people, it is reasonable to hypothesize the opposite effect, i.e. that good animal contact reduces anti-social behavior. there is a need to assess the widespread but largely untested belief that we should teach children to be kind to animals. for example, children exposed to humane education programs displayed enhanced empathy for humans compared with children who were not exposed to such programs ( ). one long-recognized but often ignored value of animal contact is that many people find joy and even humor in interacting with animals. animals often permit people to laugh at themselves or at their surroundings; note the role animals play in cartoon humor. the writer norman cousins described the role of laughter in diminishing pain, even reducing the inflammatory process that afflicted him ( ). mcculloch observed that animals owned by his psychiatric outpatients played a clear and identified role in their lives; the animals helped all the patients to laugh and maintain a sense of humor ( ). laughter, or at least encouragement to find humor, is a recognized medical intervention, and animals are a frequent source of that humor. animals a s therapy in the last few years, popular and scientific discussion of pet therapy or, more appropriately, animal facilitated therapy (aft) has flourished. much of the early literature documents nothing more than fortuitous interactions with animals that happen to be present in a therapeutic setting ( ). there were no scientific goals or expected effects other than what normally occurs when people and animals interact ( ). the animals were to provide a diver- annual reviews www.annualreviews.org/aronline a nn u. r ev . p ub li c. h ea lt h. . : - . d ow nl oa de d fr om a rj ou rn al s. an nu al re vi ew s. or g by u ni ve rs it y of c ol or ad o - d en ve r on / / . f or p er so na l us e on ly . http://www.annualreviews.org/aronline companion animals and health sion from routines in institutional settings or companionship to those living alone. in one study, nearly noninstitutionalized older adult medicare patients were evaluated prospectively. those subjects who owned pets appeared to experience less distress and to require fewer visits to their physicians than nonowners. while animal ownership generally had value, the most remarkable benefits to health were for dog owners ( ) . most people noted that the pets provided them with companionship and a sense of security and the opportunity for fudplay and relaxation. animals allowed people to experience bonding. siege ( ) suggested that pets have a stress-reducing effect. as a result, support has grown for protecting the right of pet ownership for senior citizens living in the community and for encouraging animal contact for patients in long-term nursing home settings. animals can also play a role in improving the well-being of people of all ages who are stigmatized or whose special needs make them less able to function in normal settings. kidd & kidd ( ) interviewed homeless people and noted the importance of pets for companionship, friendship, and love for this population, although the provision of food and veterinary care for the animals was a problem. wheelchair-users were more likely to experience positive social interactions when with a dog ( , ). psychiatric inpatients were more comfortable talking and participating in group therapy sessions in the presence of birds than in the same room with no animals present ( ). animals are becoming a frequent adjunctive in many therapeutic settings, for all ages and for a wide variety of circumstances ( ). conclusion animals have been part of human households since humans started living in villages, some , years ago. interaction with companion animals may well be one of our more successful strategies for survival. all cultures have main- tained a commitment to carrying for and protecting animals kept solely for companionship. today, animals continue to play a major role in the lives of many people. nevertheless, the medical history of our relationship with ani- mals documents mostly the detrimental effects of animal contact, addressing allergies, infectious diseases, zoonoses, parasitism, and traumatic injury from bites and kicks. to be sure, animal contact carries risk, but the frequency of most zoonotic diseases can be lessened, even eliminated, with animal man- agement practices that would serve both humans and the animals themselves. veterinary care to manage bacterial, viral, and parasitic infections, mechanical restraints like leashes and cages, selective breeding, responsible legislation, and owner education have made animal ownership a safe and rewarding experience for many. annual reviews www.annualreviews.org/aronline a nn u. r ev . p ub li c. h ea lt h. . : - . d ow nl oa de d fr om a rj ou rn al s. an nu al re vi ew s. or g by u ni ve rs it y of c ol or ad o - d en ve r on / / . f or p er so na l us e on ly . http://www.annualreviews.org/aronline beck & meyers the reports by friedmann et a ( ) and anderson et al ( ) have not promoted interest in funding studies on the links between human-animal in- teractions and cardiovascular health. the reports have had a limited impact on subsequent cardiovascular research since few researchers have added questions about pet ownership and attachment to animals. one independent ancillary study to the coronary arrhythmia suppression trial (cast) ( ), a national institutes of health (nih) clinical trial, is finding that pet ownership, lower anxiety, and social support are all associated with an increased likelihood of one-year survival after a myocardial infarction ( a). research on human-animal interactions is needed for reasonably large study populations. most grants to study human-animal interactions are for less than $ , , whereas large epidemiological studies are much more expensive. such an amount would be sufficient to support the addition of a few questions on human-animal interactions to larger epidemiological sur- veys, but only if those controlling the large study are supportive; they are usually not. the lack of funding is not exclusive to the study of human-animal interactions. people who pray and participate more actively in their religions have better health at all ages. people associated with conservative religious affiliations have poorer health than those with more liberal affiliations ( ). while society generally believes that being religious is valuable to health, there have been few studies ( ). there is stronger evidence for the benefit of animal contact than there is for the benefit of being religious, yet we still have trouble accepting animals as more than the “therapeutic clown” of society ( ). at the final presentation of the nih technology assessment work- shop, health benefits of pets, beck & glickman ( ) proposed that “all future studies of human health should consider the presence or absence of a pet in the home and, perhaps, the nature of this relationship with the pet, as a significant variable. no future study of human health should be considered comprehensive if the animals with which they share their lives are not in- cluded.” in sum, there is substantial evidence to support the positive benefits of animal companionship for various segments of the population, especially chil- dren, the elderly, socially isolated, and the handicapped. research needs to be directed to establish both the scope of these benefits and ways to channel them more effectively to improve the public health of the community. any annual review chapter, as well as any article cited in an annual review chapter, may be purchased from the annual reviews preprints and reprints service. - - - ; - - ; email: arpr@class.org annual reviews www.annualreviews.org/aronline a nn u. r ev . p ub li c. h ea lt h. . : - . d ow nl oa de d fr om a rj ou rn al s. an nu al re vi ew s. or g by u ni ve rs it y of c ol or ad o - d en ve r on / / . f or p er so na l us e on ly . http://www.annualreviews.org/aronline companion animals and health 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h ea lt h. . : - . d ow nl oa de d fr om a rj ou rn al s. an nu al re vi ew s. or g by u ni ve rs it y of c ol or ad o - d en ve r on / / . f or p er so na l us e on ly . http://www.annualreviews.org/aronline 	logo: untitled case report repetitive transcranial magnetic stimulation for treatment of depression in a patient with severe traumatic brain injury alessandro iliceto, md, rachel l seiler, md, mph, korak sarkar, md , the university of queensland school of medicine, ochsner clinical school, new orleans, la department of neurology, ochsner clinic foundation, new orleans, la background: traumatic brain injury (tbi) commonly presents with a constellation of findings, including physical, cognitive, and psychological disturbances. traditionally, few options have been available for long-term management of mood symptoms for post-tbi patients who are refractory to medications. repetitive transcranial magnetic stimulation (rtms) is a promising alternative treatment. case report: a -year-old male with history of anxiety and bipolar depression incurred a tbi after a -foot fall. after his physical recovery, the patient had refractory depression. eight months after the tbi event, he underwent a -week course of rtms treatment and had a . % improvement in mood symptoms by the end of the therapy as indicated by the patient health questionnaire- , transitioning from severe to mild depression according to the scoring system. clinical correlation during the months following conclusion of rtms therapy showed no signs of remission or adverse side effects. the patient remains stable and lives independently year after treatment with mood-stabilizing medications. conclusion: this case provides evidence for successful treatment of refractory depressive symptoms after severe tbi with the addition of rtms to psychotherapy and mood-stabilizing medications, supporting the safety and tolerability of this novel therapeutic approach. further studies are needed to validate the contribution of rtms for management of mood symptoms in patients with tbi. keywords: brain injuries–traumatic, depression, repetitive transcranial magnetic stimulation address correspondence to korak sarkar, md, department of neurology, ochsner clinic foundation, jefferson hwy., new orleans, la . tel: ( ) - . email: korak.sarkar@ochsner.org introduction traumatic brain injuries (tbis) are projected to affect a growing number of americans each year, already increasing from an estimated . million in to . million in , according to a report. the most common post-tbi morbidity is major depressive disorder (mdd), with typically reported symptoms of fatigue, frustration, and poor con- centration. - traditionally, treatment modalities have been limited to the customary multifactorial rehabilitation, pharma- cotherapy, and psychotherapy approach of the biopsycho- social model. however, interest has increased in the use of repetitive transcranial magnetic stimulation (rtms) as a potential non- pharmacologic alternative therapeutic tool for modulating brain function. this noninvasive method of stimulating nerve cells in the brain uses a magnetic field that generates a current to modulate brain activity, and rtms is thought to have an effect on brain plasticity during the chronic phase of recovery (> months post-tbi) that can help overcome long-term cognitive deficits after injury. , the inaugural case study showed the benefit of rtms in reducing depres- sive symptoms. the use of rtms has since been validated via other studies that provided evidence of equally promis- ing outcomes in the management of unipolar and bipolar depression. - however, this form of therapy has not been thoroughly evaluated in the post-tbi patient popula- tion, particularly in patients with severe tbi, because of a lack of data regarding its safety and efficacy. in this study, we add to the limited amount of available lit- erature supporting the safe and successful use of rtms in the treatment of refractory depression in a patient with a his- tory of severe tbi. additionally, this case study showcases a new model of therapy that incorporates rtms treatment in conjunction with current standard therapeutic approaches. case report a -year-old male with a medical history of anxiety and bipolar disorder type i sustained a -foot fall in july ochsner journal : – , © academic division of ochsner clinic foundation doi: . /toj. . ochsner journal from a suicide attempt. the fall resulted in a closed head in- jury and multiple rib and pelvic fractures. the patient was in a coma for - days with a glasgow coma scale score of . he required an intensive care unit stay with a tracheos- tomy tube for respiratory support. initial brain scans with gra- dient recalled echo t -weighted imaging showed diffuse axonal injury (figure). this type of magnetic resonance im- aging (mri) allows for greater sensitivity in detecting micro- hemorrhages compared to conventional mri or computed tomograpy imaging. after discharge from the hospital, the patient was admitted to a neurologic rehabilitation facility where he initially endorsed cognitive decline and visual processing deficits. he also displayed signs of dysarthria, in- termittent dysphagia, and retrograde and anterograde am- nesia with no recollection of the accident, in addition to self-reported fatigue and insomnia. the patient physically improved at the rehabilitation facility until discharge in octo- ber but continued to endorse severe depressive symp- toms with recurrent suicidal ideation. symptoms were refractory to increased dosages of his psychiatric medica- tions that included bupropion mg daily before noon, olanzapine mg at bedtime, oxcarbazepine mg twice daily, and lamotrigine mg daily. trazodone mg at bedtime was added to manage insomnia. a multifaceted ap- proach was adopted in collaboration with the patient’s neu- rologist in an attempt to control his mood symptoms, including pet therapy, supportive groups (eg, regular church attendance, national alliance on mental illness group meet- ings), and lifestyle modifications. in march , the attend- ing psychiatrist changed the patient’s medication regimen, substituting quetiapine mg for olanzapine because of lack of response and adding methylphenidate mg daily to improve concentration. despite these changes, the pa- tient continued to endorse suicidal ideation, and his ability to function (eg, live independently, interact with others in so- cial situations) remained dramatically impaired. because of the severity and refractory nature of his condition, he was re- ferred to an outside psychiatrist to discuss the possibility of rtms therapy. of note, the patient did not endorse any manic symptoms throughout these evaluations, and he did not experience any posttraumatic seizure following the tbi. an rtms treatment course was adopted using standard depression protocols. the patient’s rtms treatment appa- ratus consisted of the neurostar tms therapy system (v. . . ). coil position was set at . cm anterior/posterior, zero-degree angle, and stimulus onset asynchronies of degrees. the patient underwent treatment sessions in the outpatient setting ( days of therapy per week for weeks) of -hour and -minute duration per session. high- frequency stimulation at hz over the left dorsolateral pre- frontal cortex was used. treatment was set at a standard motor threshold (mt) level of . with treatment intensity at % of mt level, a -second stimulation time, and a -second interstimulation interval for a total of , pulses administered per session. the patient completed the treat- ment course between march and may . the patient’s mood symptoms were quantitatively evalu- ated throughout the treatment protocol using the patient health questionnaire- (phq- ) to self-report mood symp- toms during psychiatry visits. the patient scored on the phq- after week of rtms therapy, placing him on the se- vere depression spectrum. as shown in the patient’s weekly scores (table), mood improvement was observed within weeks of initiating treatment when the patient’s score de- creased to (moderately severe depression). after month of therapy, the patient reported being more functional and was able to relocate to an apartment and live by himself without further endorsement of suicidal ideation. at the end of weeks of therapy, the patient’s score improved to (mild depression), constituting a . % reduction in score from the beginning to the conclusion of his rtms treatment protocol. the patient was regularly followed by the psychia- trist and neurologist who did not note clinical or self-reported adverse effects to the therapy. subsequent visits focused on community reintegration, which included defining interests, long-term life goals, and the possibility of obtaining employment. the patient was amenable to volunteering at the rehabilitation facility where he had resided during the initial treatment for his tbi. at -year follow-up, he has not endorsed further mood de- compensations or suicidal ideation, he has not required additional hospitalizations, and he maintains functional inde- pendence by living in his own apartment. he remains on the same medication regimen and reports adequate compli- ance with no severe adverse effects. discussion the improvement in mood symptoms demonstrated by this patient is consistent with results of the few published case studies on the use of rtms , and provides further support for the safe and effective clinical use of rtms for re- fractory depression in post-tbi patients, without significant side effects. the phq- questionnaire used to track the patient’s re- sponse to rtms is a well-established method for objectively measuring the severity of major depressive symptoms (ranked on scale - ranging from “not at all” to “nearly every day”) in multiple contexts of personal emotions, feel- ings, and daily life activities. classification of depression level is determined by the phq- composite score of each item set and ranges from minimal depression (total score - ) to severe depression (total score - ). the phq- has proved to be useful for initial evaluation and for monitor- ing treatment and relapses of patients with mdd. the results of the phq- that the patient completed through- out his treatment period showed a clear improvement in figure. gradient recalled echo sequence shows hemosider- in deposition consistent with mild diffuse axonal injury (arrows). volume , number , fall iliceto, a self-reported mood symptoms over time that was corrobo- rated by medical professionals during follow-up visits. some other studies on this topic have used provider- based assessments of mood, such as the hamilton depres- sion rating scale (ham-d), , so our results cannot be di- rectly compared to those. one study, despite documenting a decrease in mood symptoms with the ham-d from base- line to follow-up, did not show a concurrent significant self- reported decrease in symptoms according to the phq- , dif- fering from our findings. tbi was considered a relative contraindication to the use of rtms because of the risk of seizures. this case report and several aforementioned studies , , , have shown that rtms can be safely used in the tbi population. our pa- tient tolerated sessions of high-frequency rtms without any seizures or other clinical adverse effects. limitations to this case study that warrant consideration in- clude the lack of a true baseline quantitative evaluation of the patient’s depressive symptoms prior to the tbi or the start of rtms therapy. the patient did not receive any formal testing of his functional abilities; they were assessed by the neurol- ogist based upon the patient’s self-reported evaluation dur- ing each consultation. moreover, several changes in the patient’s psychiatric medication regimen started around the time of rtms therapy initiation, including the substitution of quetiapine for olanzapine and the addition of methylpheni- date. consequently, determining the level of contribution of rtms to his self-reported change in mood is not possible; the mood changes might have resulted from the alterations in his pharmacotherapy during the treatment protocol. how- ever, prior attempts to adjust the patient’s medications, in- cluding dose and class, did not show consistent evidence of mood symptom improvement. finally, if the patient may suffer from possible long-term effects from rtms therapy is unclear, as the last treatment was administered in may . worth noting, however, is that the therapy resulted in a sustained and profound long-lasting improvement in the patient’s functional level from his debilitating mental illness, justifying the decision for aggressive management. conclusion despite the increasing use of rtms as a noninvasive ther- apy for a variety of psychological and cognitive symptoms, it has not yet been recognized as a standard adjunct therapy in the tbi population. concerns remain regarding the safety and longevity of rtms therapy, given that the physiologic ef- fects of the treatment and the extent of stimulation that may be administered without seizure induction are not fully un- derstood. our case report is one of the few documented studies of successful rtms use for debilitating mood symp- toms in patients who previously incurred a severe tbi. it pro- vides further evidence regarding the safety of this type of treatment and its positive impact when used in combination with other therapeutic interventions. powered studies are needed to validate the contribution of rtms in the treatment of severe depression in the post-tbi populace. further work is also required to establish guidelines regarding definitive rtms safety and efficacy protocols for use in this patient population. acknowledgments the authors have no financial or proprietary interest in the subject matter of this article. references . taylor ca, bell jm, breiding mj, xu l. traumatic brain injury- related emergency 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fidgety or restless that you have been moving around a lot more than usual thoughts that you would be better off dead or of hurting yourself in some way total score a numerical scoring system: = not at all; = several days; = more than half the days; = nearly every day. ochsner journal repetitive transcranial magnetic stimulation in traumatic brain injury . whelan-goodinson r, ponsford j, johnston l, grant f. psychiatric disorders following traumatic brain injury: their nature and frequency. j head trauma rehabil. sep-oct; ( ): - . doi: . /htr. b e a aa. . kreutzer js, seel rt, gourley e. the prevalence and symptom rates of depression after traumatic brain injury: a comprehensive examination. brain inj. jul; ( ): - . . fann jr, hart t, schomer kg. treatment for depression after traumatic brain injury: a systematic review. j neurotrauma. dec; ( ): - . doi: . /neu. . . . lee jc, blumberger dm, fitzgerald pb, daskalakis zj, levinson aj. the role of transcranial magnetic stimulation in 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yct. b e eb c . . nielson dm, mcknight ca, patel rn, kalnin aj, mysiw wj. preliminary guidelines for safe and effective use of repetitive transcranial magnetic stimulation in moderate to severe traumatic brain injury. arch phys med rehabil. apr; ( suppl):s -s . doi: . /j.apmr. . . . . kroenke k, spitzer rl, williams jb. the phq- : validity of a brief depression severity measure. j gen intern med. sep; ( ): - . . liu y, wang j. validity of the patient health questionnaire- for dsm-iv major depressive disorder in a sample of canadian working population. j affect disord. nov ; : - . doi: . /j.jad. . . . . o’reardon jp, solvason hb, janicak pg, et al. efficacy and safety of transcranial magnetic stimulation in the acute treatment of major depression: a multisite randomized controlled trial. biol psychiatry. dec ; ( ): - . . martin jl, barbanoj mj, schlaepfer te, thompson e, pérez v, kulisevsky j. repetitive transcranial magnetic stimulation for the treatment of depression. systematic review and meta- analysis. br j psychiatry. jun; : - . . rossi s, hallett m, rossini pm, pascual-leone a; safety of tms consensus group. safety, ethical considerations, and application guidelines for the use of transcranial magnetic stimulation in clinical practice and research. clin neurophysiol. dec; ( ): - . doi: . /j. clinph. . . . this article meets the accreditation council for graduate medical education and the american board of medical specialties maintenance of certification competencies for patient care and medical knowledge. volume , number , fall iliceto, a bar .qxd psychiatric services ♦ june vol. no. the effects of animal-assisted therapy on anxiety ratings of hospitalized psychiatric patients ssaannddrraa bb.. bbaarrkkeerr,, pphh..dd.. kkaatthhrryynn ss.. ddaawwssoonn,, pphh..dd.. within the last decade, stud-ies supporting the healthbenefits of companion ani- mals have emerged ( – ). cardiovas- cular effects are often the focus, due partly to findings from a study that reported longer survival rates fol- lowing myocardial infarction for pet owners compared with people with no pets ( ). more recent evidence of cardiovascular benefit was document- ed in an australian study involving , participants ( ). the authors found that pet owners had significant- ly lower blood pressure and triglyc- eride levels compared with non-pet- owners, and the differences could not be explained by differences in ciga- rette smoking, diet, body mass index, or socioeconomic profile. objective: animal-assisted therapy involves interaction between pa- tients and a trained animal, along with its human owner or handler, with the aim of facilitating patients’ progress toward therapeutic goals. this study examined whether a session of animal-assisted therapy re- duced the anxiety levels of hospitalized psychiatric patients and whether any differences in reductions in anxiety were associated with patients’ diagnoses. methods: study subjects were patients referred for therapeutic recreation sessions. a pre- and posttreatment crossover study design was used to compare the effects of a single animal-assist- ed therapy session with those of a single regularly scheduled thera- peutic recreation session. before and after participating in the two types of sessions, subjects completed the state scale of the state-trait anxiety inventory, a self-report measure of anxiety currently felt. a mixed-models repeated-measures analysis was used to test differences in scores from before and after the two types of sessions. results: sta- tistically significant reductions in anxiety scores were found after the animal-assisted therapy session for patients with psychotic disorders, mood disorders, and other disorders, and after the therapeutic recre- ation session for patients with mood disorders. no statistically signifi- cant differences in reduction of anxiety were found between the two types of sessions. conclusions: animal-assisted therapy was associated with reduced state anxiety levels for hospitalized patients with a vari- ety of psychiatric diagnoses, while a routine therapeutic recreation ses- sion was associated with reduced levels only for patients with mood dis- orders. (psychiatric services : – , ) stress and anxiety are considered contributory factors to cardiovascular disease. investigators have hypothe- sized that companion animals may serve to lower levels of stress and anx- iety ( , , ). several authors have re- ported lower blood pressure readings among adults and children when a previously unknown companion ani- mal is present during various stressful activities ( , – ). animals have been associated with positive effects on patients in a variety of health care settings ( ). when an- imals were first introduced to these settings, they were generally brought for visits that were incidental to the treatment program. currently, ani- mals are purposely included in treat- ment through various interventions broadly known as animal-assisted therapy. animal-assisted therapy involves the use of trained animals in facilitat- ing patients’ progress toward thera- peutic goals ( ). interventions vary widely, from long-term arrangements in which patients adopt pets to short- term interactions between patients and a trained animal in structured ac- tivities. although animals have typically been well received on psychiatric ser- vices, much of the data attesting to their benefits has been anecdotal ( – ). several decades ago, searles ( ) and levinson ( ) addressed the therapeutic benefit of a companion dog for patients with schizophrenia, contending that the caring, human- canine relationship helped ground the patient in reality. chronic mental- ly ill residents in supportive care dr. barker is associate professor of psychiatry, internal medicine, and anesthesiology and dr. dawson is affiliate assistant professor of biostatistics at the medical college of virginia, virginia commonwealth university, p.o. box , richmond, virginia . dr. barker’s e-mail address is sbbarker@hsc.vcu.edu. psychiatric services ♦ june vol. no. homes who were visited by puppies had decreased depression after the visits, compared with a matched con- trol group ( ). more recently, arnold ( ) de- scribed the use of therapy dogs with patients with dissociative disorders. benefits included the dog’s calming in- fluence, ability to alert the therapist early to clients’ distress, and facilita- tion of communication and interac- tion. others have proposed that an an- imal can serve as a clinical bridge in psychotherapy, providing an entree to more sensitive issues ( , , ). on an inpatient psychiatric unit, animal-assisted therapy was found to attract the greatest number of pa- tients among those who selected groups to attend voluntarily and was found to be the most effective in at- tracting isolated patients ( ). other researchers found that a group meet- ing for psychiatric inpatients held in a room where caged finches were lo- cated had higher attendance and higher levels of patient participation, and was associated with more im- provement in scores on the brief psychiatric rating scale, compared with a matched group held in a room without birds ( ). anecdotally, psy- chiatric patients who are withdrawn and nonresponsive have been de- scribed as responding positively to a therapy dog with smiles, hugs, and talking ( ). for elderly patients with dementia, lower heart rates and noise levels were associated with the presence of a therapy dog ( ), and patients with alzheimer’s disease sig- nificantly increased socialization be- haviors when a therapy dog was nearby ( ). based on the evidence in the litera- ture associating companion animals with anxiety reduction and with posi- tive responses from clinical popula- tions, this study investigated the ef- fect of an animal-assisted therapy group session on the anxiety levels of psychiatric inpatients. also of re- search interest was whether any anxi- olytic effect found varied by diagnos- tic group. methods a pre- and posttreatment crossover design was used for this study. changes in anxiety ratings were com- pared for the same patients under two conditions: a single animal-assist- ed therapy group session and a single therapeutic recreation group session that served as a comparison condi- tion. the setting for this study was the inpatient psychiatry service of an ur- ban academic medical center. the service treats adult patients with a full range of acute psychiatric disorders. the average length of stay is seven to eight days. the animal-assisted therapy session consisted of approximately min- utes of group interaction with a ther- apy dog and the dog’s owner. during the semistructured session, which was held once a week, the owner talked generally about the dog and encouraged discussion about pa- tients’ pets as the dog moved freely about the room interacting with pa- tients or carrying out basic obedience commands. the comparison condition was a therapeutic recreation group session held on the unit on the day following the animal-assisted therapy session. therapeutic recreation sessions were held daily on the unit. they varied in content, including education about how to spend leisure time, presenta- tions to increase awareness of leisure resources in the community, and mu- sic and art activities. coordination of both the animal-assisted therapy ses- sions and the therapeutic recreation sessions was shared by three recre- ational therapists. the study used the state scale of the state-trait anxiety inventory to measure patients’ levels of anxiety be- fore and after the animal-assisted therapy session and the therapeutic recreation session ( ). the state- trait anxiety inventory is a brief, easy-to-administer self-report mea- sure that is widely used in research and clinical practice. the state scale, which measures the level of anxiety felt at the present time, has been found to be sensitive to changes in transitory anxiety expe- rienced by patients in mental health treatment. the inventory consists of items related to feelings of appre- hension, nervousness, tension, and worry. for each item, subjects circle one of four numbers corresponding to ratings of not at all, somewhat, moderately so, or very much so. in- struments are scored by calculating the total of the weighted item re- sponses. scores can range from to , with greater scores reflecting higher levels of anxiety. the internal consistency for the state scale of the state-trait anxiety inventory is high; median alpha coef- ficient is . ( ). the construct valid- ity is supported by studies showing that state scale scores are higher un- der stressful conditions. procedures a total of adult psychiatric pa- tients consecutively referred for ther- apeutic recreation over an eight- month period in were eligible for the study. patients are referred for therapeutic recreation as soon as they are stable enough to participate in group activities, generally within to hours of admission. when patients were initially re- ferred for therapeutic recreation, they were asked to sign a consent form to participate in a group session involving a therapy dog. patients were not eligible to participate if they had any known canine allergies, were fearful of dogs, or did not sign a con- sent form. study subjects attended both an animal-assisted therapy group session and a therapeutic recreation group session. the two types of sessions were held once a the animal-assisted therapy session consisted of about minutes of group interaction with a therapy dog and the dog’s owner. psychiatric services ♦ june vol. no. week on consecutive days at the same time on each day. the three recreational therapists providing services to the inpatient psychiatry unit volunteered to assist with the study. because the thera- pists were not blind to the treatment condition, steps were taken to mini- mize bias by training the therapists in standard data collection proce- dures. at the beginning and end of each animal-assisted therapy group session and the comparison thera- peutic recreation group session the following day, the recreational thera- pist administered the state-trait anxiety inventory. the therapists read the instrument verbatim to any patient who had difficulties reading. for the animal-assisted therapy group, the pretreatment instrument was completed before the dog en- tered the room. two female owners of therapy dogs volunteered to provide the animal-as- sisted therapy sessions. the first vol- unteer provided the therapy for the initial four months of the study; then she became ill and could not contin- ue. the second volunteer agreed to continue the study following the same format used by the first volunteer. her participation required reversing the days that the animal-assisted ther- apy session and the therapeutic recre- ation session were offered. the dogs and owners met hospital policy for participating in animal-as- sisted therapy, including documenta- tion of the dog’s current vaccinations, controllability, and temperament. the volunteers were advised of the animal-assisted therapy group session and given direction on how to lead the therapy group. analysis instruments were scored twice for ac- curacy by one of the authors using the scoring keys for the state-trait anxi- ety inventory. a mixed-models re- peated-measures analysis was used to compare pre- and posttreatment dif- ferences in anxiety scores between and within the animal-assisted thera- py condition and the therapeutic recreation condition by diagnostic category. results because this study was conducted in a clinical setting, pre- and posttreat- ment measures on all subjects under both conditions were difficult to ob- tain. six patients refused to partici- pate because of canine allergies or fear of dogs. of the patients who were eligible for the study, percent (n= ) participated in at least one animal-assisted therapy group session or one recreation group session and completed a pre- and a posttreatment measure for the session. fifty patients completed a pre- and a posttreatment measure for both types of sessions. failure to complete all four measures was primarily due to time conflicts with medical treatments and patient discharges. patient characteristics the mean±sd age of the pa- tients referred for therapeutic recre- ation was ± years, and their mean length of stay was . ± . days. a total of patients were women, and were men. the ma- jority were black ( subjects, or percent) and single ( subjects, or percent). they had completed an average of . ± . years of educa- tion. for analysis, patients were catego- rized by primary discharge diagnosis. the diagnoses were collapsed into four categories: mood disorders, in- cluding all depressive, bipolar, and other mood disorders, for pa- tients ( . percent); psychotic disor- ders, including schizophrenia, schizo- affective disorder, and other psychot- ic disorders, for patients ( . per- cent); substance use disorders, for patients ( . percent); and all other disorders, including anxiety, cogni- tive, personality, and somatization disorders, for patients ( . per- cent). ttaabbllee mean pretreatment, posttreatment, and change scores on the state-trait anxiety inventory for hospitalized psychiatric pa- tients with various diagnoses who participated in an animal-assisted therapy session or therapeutic recreation animal-assisted therapy (n= ) therapeutic recreation (n= ) diagnosis and measure n mean sd f p< n mean sd f p< mood disorders pretreatment . . . . posttreatment . . . . change . . . . . . . . psychotic disorders pretreatment . . . . posttreatment . . . . change . . . . . . . ns substance use disorders pretreatment . . . . posttreatment . . . . change . . . ns . . . ns other disorders pretreatment . . . . posttreatment . . . . change . . . . . . . ns df= , psychiatric services ♦ june vol. no. comparison of therapy groups table shows the mean scores of the study participants on the state- trait anxiety inventory before and af- ter attending an animal-assisted ther- apy group session and a therapeutic recreation group session as well as the mean change scores. change scores were calculated using data from pa- tients with measures at both pre- and posttreatment time points. the f test and p values show the significance of the change across time. no statistical- ly significant differences in anxiety change scores were found between animal-assisted therapy and thera- peutic recreation. although no signif- icant between-group differences were found, within-group differences were statistically significant for both animal-assisted therapy and thera- peutic recreation (f= . , df= , , p=. , and f= . , df= , , p<. , respectively). among patients who participated in therapeutic recreation, only patients with mood disorders had a significant mean decrease in anxiety. among pa- tients who participated in animal-as- sisted therapy, patients with mood disorders, psychotic disorders, and other disorders had a significant mean decrease in anxiety. this find- ing suggests that animal-assisted ther- apy reduces anxiety for a wider range of patients than the comparison con- dition of therapeutic recreation. discussion and conclusions spielberger ( ) provided normative state-trait anxiety inventory scores for neuropsychiatric patients based on data from male veterans. com- pared with the normative patients with depressive reaction, the patients with mood disorders in the study re- ported here had somewhat lower mean pretreatment scores ( . ± . , compared with . ± . ). the pretreatment scores of the pa- tients with psychotic disorders in this study were slightly higher than the scores for the normative patients with schizophrenia ( . ± . , com- pared with . ± . ). in this study, no significant differ- ence was found between the anxiety change scores after patients partici- pated in animal-assisted therapy and after patients participated in thera- peutic recreation. however, this lack of difference could be due to the small number of patients (n= ) who completed all four study measures. a power analysis of the magnitude of differences between the change scores for animal-assisted therapy and therapeutic recreation indicated that larger samples would be needed to achieve an percent power level at an alpha of . : a sample of pa- tients with psychotic disorders, patients with substance use disorders, and patients with other disorders. for patients with mood disorders, the difference in anxiety change scores was too small for any reasonably sized study to detect a significant differ- ence. for within-group differences, a sig- nificant reduction in anxiety after therapeutic recreation was found on- ly for patients with mood disorders, whereas a significant reduction after animal-assisted therapy was found for patients with mood disorders, psy- chotic disorders, and other disorders. the size of these reductions was sim- ilar to differences reported by wilson ( ) for college students whose anxi- ety scores were measured under vary- ing levels of stress. no significant reduction was found in anxiety scores for patients with substance use disorders after either animal-assisted therapy or therapeu- tic recreation. this lack of difference may be due to the small sample size or due to a relationship between state anxiety and physiological withdrawal that is less amenable to change within one session of animal-assisted therapy or therapeutic recreation. the reduction in anxiety scores for patients with psychotic disorders was twice as great after animal-assisted therapy as after therapeutic recre- ation. this finding suggests that ani- mal-assisted therapy may offer pa- tients with psychotic disorders an in- teraction that involves fewer de- mands compared with traditional therapies. as arnold ( ) contends, perhaps the therapy dog provides some sense of safety and comfort not found in more traditional inpatient therapies. alternatively, the dog may provide a nonthreatening diversion from anxiety-producing situations ( ). or perhaps it is the physical touching of the dog that reduces pa- tients’ anxiety, as has been reported for other populations ( ). in this study setting, animal-assist- ed therapy was offered only one day each week. it would be interesting to study the effect of more frequent ex- posure to determine if the reduced anxiety is partly due to novelty or if increased exposure results in further anxiety reductions. although some patients in the study remained hospi- talized long enough to participate in more than one animal-assisted thera- py session, there were not enough such patients to permit investigation of the effect of repeated exposure. therefore, data from their initial ani- mal-assisted therapy and therapeutic recreation sessions were used for analyses. it is not possible to determine how much the dog or the owner con- tributed independently to the reduc- tions in anxiety found in this study. al- though the study’s purpose was to ex- amine the effect of animal-assisted therapy, further examination of the effect of its components is needed. because many owners of therapy dogs volunteer their time to come to psychiatric units, animal-assisted therapy appears to be a cost-effective intervention. however, volunteers may not participate consistently. in this the reduction in anxiety scores for patients with psychotic disorders was twice as great after animal-assisted therapy as after therapeutic recreation. psychiatric services ♦ june vol. no. study, a second therapy dog and own- er, a potential confounding variable, were introduced after the first owner became ill. use of nonvolunteers could strengthen future studies by providing more consistent treatment conditions. finally, although the results pro- vide evidence of the immediate effect on state anxiety of a single session of animal-assisted therapy, further study is needed to determine if patients’ overall level of anxiety is affected. further studies of the effect of ani- mal-assisted therapy on psychiatry services are needed to replicate the findings from this study and to ad- vance our understanding of the ther- apeutic benefits of the human-animal interaction. ♦ acknowledgments the authors thank al best, ph.d., for his assistance with statistical analysis and pat conley, helen brown, and claudette mc- daniel for their assistance with data col- lection. references . akiyama a, holtzman jm, britz vve: pet ownership and health status during be- 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society, . barba be: the positive influence of ani- mals: animal-assisted therapy in acute care. clinical nurse specialist : – , . voelker r: puppy love can be therapeutic, too. jama : – , . beck a: the therapeutic uses of animals. veterinary clinics of north america, small animal practice : , . beck a, katcher a: a new look at animal- assisted therapy. journal of the american veterinary medical association : – , . draper rj, gerber gj, layng em: defin- ing the role of pet animals in psychothera- py. psychiatric journal of the university of ottawa : – , . searles h: the non-human environment. new york, international universities press, . levinson bm: the dog as co-therapist. mental hygiene : – , . francis g, turner j, johnson s: domestic animal visitation as therapy with adult home residents. international journal of nursing studies : – , . arnold jc: therapy dogs and the dissocia- tive patient: preliminary observations. dis- sociation : – , . barker sb, barker rt, dawson ks, et al: the use of the family life space diagram in establishing interconnectedness: a prelimi- nary study of sexual abuse survivors, their significant others, and pets. individual psy- chology, in press . mallon gp: utilization of animals as thera- peutic adjuncts with children and youth: a review of the literature. child and youth care forum : – , . holcomb r, meacham m: effectiveness of an animal-assisted therapy program in an inpatient psychiatric unit. anthrozoös : – , . beck a, seraydarian l, hunter g: the use of animals in the rehabilitation of psychi- atric inpatients. psychological reports : – , . walsh pg, mertin pg, verlander df, et al: the effects of a “pets as therapy” dog on persons with dementia in a psychiatric ward. australian occupational therapy journal : – , . batson k, mccabe bw, baun mm, et al: the effect of a therapy dog on socialization and physiologic indicators of stress in per- sons diagnosed with alzheimer’s disease, in animals, health, and quality of life: ab- stract book. paris, france, afirac, . spielberger cd: state-trait anxiety inven- tory manual. palo alto, calif, mind gar- den, . arkow p: how to start a pet therapy pro- gram. alameda, calif, latham foundation, ffiirrsstt--ppeerrssoonn aaccccoouunnttss iinnvviitteedd ffoorr ccoolluummnn patients, former patients, family members, and mental health professionals are invited to submit first-person accounts of experiences with mental illness and treat- ment for the personal accounts column of psychiatric services. maximum length is , words. the column appears every other month. material to be considered for publication should be sent to the column editor, jeffrey l. geller, m.d., m.p.h., at the department of psychiatry, university of massachusetts medical school, lake avenue north, worcester, massachusetts . authors may publish under a pseudonym if they wish. psychiatric services ♦ june vol. no. wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty 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( ) you must attribute this aam in the following format: creative commons by-nc-nd license (http://creativecommons.org/licenses/by-nc-nd/ . /deed.en), . /j.eujim. . . the publisher's version is available at: http://linkinghub.elsevier.com/retrieve/pii/s when citing, please refer to the published version. link to this full text: http://hdl.handle.net/ / 	 	 title: animal assisted intervention: a systematic review of benefits and risks authors: bert f , md, gualano mr , md, camussi e §, md, pieve g , md, voglino g , md, siliquini r , prof. affiliations: department of public health, university of torino, italy corresponding author: § dr. elisa camussi, md department of public health, university of torino, italy via santena bis, torino, italy tel. + fax + e-mail: elisa.camussi@unito.it conflict of interests: none funding: none 	 	 abstract introduction: the therapeutic use of animals has been debated for decades, and its use explored in a variety of settings and target populations. research on the benefits of animal assisted intervention and animal assisted activity has been carried out for people with different pathologies but there is no uniformity on naming these interventions. however, evidence based knowledge is essential to implement effective strategies in hospital. this review aimed to focus on the use of animal programs for hospitalized patients, and considered the potential risks. methods:. the following databases were searched: pubmed, scopus, psychinfo, ebsco animals, proquest, web of science, cinahl, and medline, and prisma guidelines were adhered to. all papers considering effectiveness or risks of animal use in hospitals were included. results: out of articles were identified articles suitable for inclusion into the review. data was heterogeneous in terms of age of patient, health issue, animals used and the length of interactions, which made comparison problematic. studies on children, psychiatric and elderly patients were the most common. the animal-intervention programs suggested various benefits such as reducing stress, pain and anxiety. other outcomes considered were changes in vital signs, hemodynamic measures and nutritional intake. most studies used dogs, but other animals were effectively employed including horses, fishes, cats and caged birds. the major risks outlined were allergies, infections and animal-related accidents. zoonosis was a possible risk, as well as common infections as methicillin-resistant staphylococcus aureus. the implementation of simple hygiene protocols was effective at minimizing risk. the literature suggested that the benefits outweighed by far the risks. conclusion: the human relationship with animals can be useful and relatively safe for inpatients with various psychological, social and behavioural problems. moreover, the implementation of security precautions and the careful selection of patients should minimize the risks, particularly those infection- related. many aspects remain unclear, further more controlled studies are required. keywords: animal-assisted activity; animal-assisted therapy; animal-assisted intervention; pet-therapy; hospital; systematic review, risks & benefits, clinical guidelines 	 	 introduction the animal assisted therapy (aat) is a health intervention, meant to improve physical, social, emotional or cognitive functioning, with animals as integral part of the treatment( ). the therapeutic use of animals was argued for decades and many associations employ this intervention in order to improve care. the interest shown by the scientific community is proven not only by the amount of articles published, but also by the specific trainings offered by many universities and in particular by the inception of specific law to regulate this practice.( ) the “pet partners” (an organization dedicated to improve people’s health through the interaction with animals) pointed out the differences between aat and animal assisted activity (aaa), less structured and mainly composed by pet visitation)( ). the aaa, as described above, is slightly structured and it includes, primarily, pet-visitation. these kind of activities are in general spontaneous, grouping several patients, and poorly standardized with regard to duration and type of activities. on the contrary, the aat sessions are strictly organized considering both the activity type and the duration. indeed, each aat session presents individualized goals and is conducted by specifically trained couples (handler and animal).( ) unfortunately, there is no uniformity on naming these interventions and aat, aaa and other names are used, often, in a confusing way. to make even harder to compare the studies different animals were used. although dog is the most common, generally every species can be employed. animal interventions have been studied for different pathologies including mental disorders( ) and cancer( ). in particular, some interventions focused on frail patients as elderly( , ) or children( , ). furthermore, aat and aaa are implemented in different settings like hospitals, nursing homes and schools( , ). the employment of animal-assisted interventions (aai) resulted increasingly popular, especially among pediatric patients. about this, chur-hansen et al. conducted a critical review regarding aai for children inpatients. this review focused primarily on the methodology of the retrieved studies. precisely, the authors concluded that the evidences regarding aai are scant, and more standardized studies (in particular rcts) about this topic are required.( ) another recent review considered only the available rcts regarding aat, retrieving overall eleven studies (published from to ). the authors outlined a relatively low quality of the recovered papers. however, the study highlighted some benefits of the aat, especially in case of psychiatric disorders. the animals employed in these interventions were disparate, from dogs to dolphins or ferrets. the authors identified some areas requiring further insights such as costs, reasons to refuse the intervention and potential adverse effects. moreover, the authors highlighted how the description of the intervention in terms of length, activities and settings, in the studies included in the review, was not always satisfying.( ) the outcomes considered, in order to define the aai benefits, are heterogeneous, incorporating subjective outcomes as the quality of life( , ), but also objective parameters as vital signs( ), hemodynamic measures( ) and nutritional intake( ). a review and meta-analysis, firstly, assessed the quantitative effects of aat. the meta-analysis included studies, and individuated a significant 	 	 improvement in the following examined areas: autism-spectrum symptoms, behavioral problems, and emotional well-being. the authors described the aat as a worthy intervention, necessitating, however, further insights.( ) furthermore, the risks of implementing animal therapeutic interventions especially in hospitals are not negligible, and these hazards must be considered( , ). an accurate knowledge of the effectiveness and risks of animal use in hospital is essential to implement effective strategies in this setting. nevertheless, data considering animal interventions are often heterogeneous.. to our knowledge, no previous reviews estimated the evidence on the use of animal- interventions for inpatients. the aim of this review was to focus on animal assisted therapy/activity for hospitalized patients, to provide a clearer view on the status of the evidence supporting this practice, as well as the potential risks. methods this review followed the preferred reporting items for systematic review and meta-analysis (prisma) statements ( ). multiple search strategies were employed to summarize the existing evidence relating to animal assisted therapy or animal assisted activity for inpatients. searches for papers reporting data about the effectiveness or the risks of animal use in hospitals were carried out using the following databases: pubmed, scopus, psychinfo, ebsco animals, proquest, web of science, cinahl and medline. three researchers (ec, gp and gv) independently performed a systematic search using the following strings: “animal assisted activity” and hospital, “animal assisted therapy” and hospital, “animal assisted intervention” and hospital, “pet therapy” and hospital, “animal assisted activity” and hospitalization, “animal assisted therapy” and hospitalization, “animal assisted intervention” and hospital, “pet therapy” and hospitalization. studies were considered eligible for inclusion if: • they were conducted in hospitals or in long-term care facilities • they were written in english, spanish or portuguese • they considered interventions of “animal assisted therapy”, “animal assisted activity” or “animal assisted intervention” no restriction was performed based on inpatient age, pathology, or type of animal used. all types of papers were included, since rcts were few and did not give a complete overview of the topic. articles were excluded if: • they were conducted outside the hospital • they were published before • they use robotic animals • they were case reports or letters to editor three investigators (ec, gp and gv) independently conducted a first literature search, sorting sources by title and abstract. then, the eligible studies for full text review were selected. during the first screening, 	 	 the irrelevant or duplicated papers were excluded. the search was completed through a reference list screening. finally, the researchers independently assessed the articles considering the criteria enunciated above. data extraction the investigators, solving any discrepancies by consensus, independently extracted data from the selected studies, collecting information about the country, the study design, the setting, the sample characteristics, the type of intervention, the outcomes, the results and the potential risks. results the search returned results. after removing the duplicates and irrelevant results, articles for full text review were obtained. the final selection obtained sources (see figure ). eight studies were conducted on children, five referred to psychiatric population, six considered elderly patients, six were performed in the emergency department, orthopedics, internal medicine or other wards, and eleven focused primarily on the intervention risks. psychiatric settings five studies focused on the aat for psychiatric inpatients (see table )( , , – ). all studies were published between ( , ) and ( , ). nearly all the studies considered a dog-aat (n= ), with the exception of a study comparing four interventions: equine-assisted psychotherapy (eap), canine- assisted psychotherapy (cap), enhanced social skills psychotherapy, and regular hospital care( ). four studies were rcts( , , , ) and one a controlled crossover study ( ). the total sample size ranged from ( ) to ( ). chu and villalta specifically focused on canine-assisted therapy for chronic schizophrenic inpatients (> years since onset)( , ). both studies underlined some positive effects of these interventions. in particular, the study of chu, highlighted an increase in self-esteem, self-determination, and a decrease in positive psychiatric symptoms and emotional symptoms after weeks of aaa (p< . ) ( ). the study of villalta showed a significant improvement from baseline after a dog-program in social contact score, in positive and negative symptom dimensions and in quality of life( ). however, no significant difference was assessed between the group experiencing aat and the control group( ). nurenberg et al. considered the effectiveness of the aat in reducing aggressiveness in chronic psychiatric inpatients, including various psychiatric diagnosis ( % presented schizophrenia or schizoaffective disorder). the authors compared two different aat, the first using dogs and the second horses. certified pet therapists, following the “pet-partners guidelines”, conducted both these interventions. the reduction of violent incidents was significantly greater in the eap group (p< . ), while other generic benefits were assessed for both the aat interventions. these positive effects were maintained for several months( ). the effects of aat were studied also in other psychiatric diseases as major depression (inpatients with suicidality tendencies). in this study, a dog-assisted intervention (two sessions of dog-aaa) effectively reduced anxiety (p= . ), as measured employing the state-trait anxiety inventory (stai). this improvement was independent from age, gender or pet possession( ). 	 	 finally, an italian study considered children experiencing acute psychiatric disorders. the main diagnosis were eating disorders ( . %) and mood disorders ( . %). in this population, the implementation of a dog-aat program once a week resulted, compared to the control group, in an improvement of clinical severity (p= . ), ordinary school attendance (p< . ), and global functioning (p< . ). in particular, the intervention group showed an improvement in socialized behaviors with adults and peers (p< . ). the authors adhered, for the protocol implementation, to the “pet partners guidelines”, and all the animals employed in the study followed strictly veterinarian sanitary protocols ( ). children hospitals eight papers referred to pet therapy in pediatric hospitals (see table )( , – ). the articles were published between ( , ) and ( ). two were descriptive studies( , ) and six trials( , , , – ). two studies had a special focus on oncological patients( , ), while the others referred to general pediatric inpatients. in particular, two interested children with acute diseases( , ). all papers used dogs, ranging from simple pet visitation( , ) to structured aat( , , ). the number of children involved ranged from ( ) to almost ( ). four studies evaluated the satisfaction after the intervention and the effects on psychosocial behaviors( , , , ), instead four considered also physiological phenomena( , – ). two studies were conducted through a survey among parents and caregivers( , ), while in two these data were integrated with children self-reports( , ). many different physiological parameters like pain( , ) or cardiovascular response( , ) were evaluated. the studies involving oncological patients showed physiological benefits, like pain reduction( ), and psychological benefits like decreased loneliness, increased relaxation, socialization and self-esteem( ). these benefits were perceived also by parents and caregivers( , ). these findings are consistent with a study conducted in acute pediatric care( ). barker et al., in a rct on generic pediatric inpatients, showed the consistency of these results in different diseases( ). this study evaluated the aai impact on anxiety and pain in acute care. a significant difference was found for anxiety, with the aai-group experiencing lower anxiety score( ). however, no significant differences within- or between-groups or pre-post intervention were assessed in nor pain or anxiety( ). for the implementation of this protocol, all the hospital policies were followed, including those regarding safeguard for the dogs. on the other hand, no differences in anxiety and medical fear were noticed in a study involving hospitalized children( ). in this study, a reduction in the systolic blood pressure (p= . ) was recorded and this reduction continued even after the intervention was over. elderly patients six articles evaluated the impact of the aat in elderly inpatients (see table )( , , , , , ). these articles were published between ( ) and ( ). five studies were performed in hospitals( , , , , ), while one was conducted in a nursing home( ). the samples ranged from ( ) to ( ) subjects. 	 	 patients were hospitalized for different diseases including cancer( ), chronic heart failure( , ), alzheimer disease( ) or chronic age-related disease( , ). the animals used were dogs( , , ), cats ( , ), rabbits( ), cage birds( ) and fishes( ). stasi used a cat-therapy ( sessions per week) for elderly patients in a long-term facility( ). a significant reduction in depressive symptoms and systolic blood pressure (p= . ) was measured in the intervention group( ). similarly, a dog therapy was compared to volunteer visit and usual care in patients suffering acute heart failure( ). compared with controls, the volunteer-dog group experienced a significant decrease in systolic pulmonary artery pressure and in pulmonary capillary wedge pressure( ). compared with the volunteer-only group, the volunteer-dog group presented a greater decrease in epinephrine and in norepinephrine levels during and after the intervention. finally, the dog-group showed a greater decrease in the state anxiety score compared to both volunteer-only (p= . ) and control group (p< . ) ( ). differently, another study analyzed the impact of dog-therapy on patients with chronic heart failure to determine the impact of canine assisted ambulation (caa) in encouraging ambulation( ). additionally, patient satisfaction was assessed. the experimental group receiving caa walked significantly more steps (p< . ) than the historical control group, and all patients responded positively to this experience( ). the benefits of aaa were investigated in a palliative care unit of a japanese hospital, considering twenty elderly users. the considered program included a -minute session once a month using dogs, cats or rabbits, all previously tested for health and suitability. the authors considered the effects of this intervention upon the quality of life of the selected inpatients, employing a validated scale (lorish face scale) to assess mood changes. the study outlined the beneficial effect of similar interventions in the mood state before and after each session (p< . ). in particular, the positive results were higher for those who claimed to like animals or that owned a pet (especially dogs).( ) furthermore, we found studies using uncommon animals like fishes( ) and cage birds( ). a first study assessed the nutritional intake in individuals with alzheimer after the introduction of an aquarium in the ward( ). the nutritional outcomes were recorded at baseline, and, then, after weeks following the aquariums introduction. the nutritional intake increased significantly (p< . ) after this intervention and continued increasing during follow-up. moreover, also the weight increased significantly (p< . )( ). a second study assessed the interaction between cage-birds and older people in hospital( ). this qualitative study investigated the patient’s reactions succeeding the introduction of cage birds in a swedish geriatric ward. patients manifested attention and curiosity regarding the birds and expressed desire to take care of them( ). emergency department, orthopedics, internal medicine and other wards, six studies evaluated the impact of pet therapy on adult inpatients with different pathologies (see table )( – ). two studies investigated the dog-aat effectiveness for orthopedic inpatients after a total joint arthroplasty intervention( , ). both studies considered the impact of this intervention on pain( , ). harper et al. inquired the subjective level of pain, using the visual analogue scale (vas)( ), while 	 	 havey et al. assessed the use of oral pain medications( ). harper et al. considered a dog-visitation session prior each physical session, and outlined lower vas score in the intervention group (p< . )( ). furthermore, the use of pain medications appeared significantly lower among the aat group (p= . )( ). harper investigated also the patient satisfaction regarding the hospital stay( ). the treatment group reported a higher level of appreciation compared to the control group (p< . ). moreover, the groups did not differ nor in the cleanliness items nor in quietness of hospital environment( ). lynch et al. studied the implementation of a dog-aai in antepartum wards for women with complicated pregnancies( ). the program consisted of non-structured dog-contact sessions. the authors assessed depression and anxiety symptoms prior and after each session( ). the women recruited presented heterogeneous complications, including pre-term labor, pre-eclampsia and diabetes. despite the lack of a control group, the results indicated that both depression and anxiety improved after the intervention (p< . )( ). two studies considered the implementation of a dog-aat in hospital wards( , ). nahm considered the development of similar programs in an emergency department, considering the opinion of patients, staff and visitors( ). the intervention was successful among both patients and visitors (< % of the patients expressed negative opinions). furthermore, the staff appreciated the intervention (over % did not considered dogs as an obstacle to routine activities)( ). coakley et al., instead, focused on the implementation of a dog-visitation program in twelve different departments, collecting patients’ opinions( ). the authors considered the effects on vital signs, pain perception (vas-scale), and mood- state (exploring anxiety, depression, hostility, vigor, fatigue and confusion). the subjects participating presented a wide range of diseases. after the intervention the participants experienced a slightly, but significant, decrease in respiratory rate (p< . ) and in pain score (p= . ). the mood scale outlined a significant improvement in nearly all the items (p< . ), except vigor and confusion( ). finally, hastings et al. investigated the use of a bi-weekly dog-visitation in a burn intensive care unit and a burn acute care unit( ). in order to guarantee the security of these patients, all the protection equipment guidelines were respected. the authors collected patients, staff and visitor opinions. nearly all comments were positive and only three patients ( . %) refused the proposed sessions, reporting fear. the number of dog-visits significantly increased during the observation, and no infection nor issues animal- related were reported( ). risks and threats of animal-intervention in healthcare settings eleven articles focused explicitly on the risks of animal use in hospitals( , , – ). these papers ranged from ( ) to ( ), and included guidelines, recommendations, clinical trials, cross- sectional surveys and reviews. two studies investigated the prevalence of infective agents in pet- visitation animals in hospitals or in long-term care facilities( , ). the first investigation is a broader survey that considered all the hospitals located in the ontario region with a pet visitation program. in particular, this investigation analyzed aural, nasal, oral, pharyngeal and rectal swabs of over visitation dogs, identifying clostridium difficile as the most common isolated organism( ). moreover, % of 	 	 these isolates were indistinguishable from the toxigenic microorganisms responsible of the human disease. in the feces samples, the authors retrieved also salmonella and escherichia coli (partly in antibiotic-resistant forms). furthermore, some samples were positive to parasitology and mycology analysis. these microorganisms were carried asymptomatically by dogs, but can be dangerous especially for immunocompromised patients( ). coughlan et al. focused on methicillin-resistant staphylococcus aureus (mrsa) colonization among residents animals (one dog and eleven cats) in a long-term care facility( ). the authors considered a large long-term care facility with over beds, characterized by the presence of resident animals. the researchers collected nasal swabs from the animals for overall eight weeks. two cats presented mrsa positive swabs and the test positivity was confirmed in subsequent tests. in the meantime, human mrsa infections occurred in the facility( ). lefebvre et al. ( ) conducted a cross-sectional survey in the ontario hospitals in order to assess the presence and characteristics of canine visitation programs for inpatients. moreover, the authors interviewed the dog handlers regarding the health protocols for aaa. nearly all the hospitals surveyed ( %) consented the access to dogs in their facilities. two of the selected hospitals interrupted the aaa program, during , due to the onset of severe acute respiratory syndrome. the screening protocols resulted extremely variable, and eighteen dog-owners ( %) declared that they did not follow any infection control. furthermore, over % of the interviewed handlers allowed the dog both to climb on patient’s bed and to lick patients. finally, the dog owners were not aware of the potential zoonosis risks. ( ) two reviews( , ) considered the potential risks of animal use in healthcare settings, considering infections, allergies and bites. precisely, khan et al. considered the aaa or aat implementation in healthcare settings, especially in hospitals.( ) the second review focused specifically on the healthcare environment of europe and north america.( ) the zoonosis can be a risk especially for very young, old or immunosuppressed patients( , ). all the animals mostly used in aai can act as a source of infections. not only zoonosis could be a risk, but also other common infections as mrsa. however, the application of hygiene protocols consented an effective risk minimization( ). moreover, the repeated health screenings for the animals and the careful selection of patients, using special precautions in case of open wounds and immunosuppression can help to control the risks( ). another risk is allergy; anyhow, the reasoned selection of patients and animals can effectively reduce this risk. finally, animal-related accidents can be practically canceled following appropriate guidelines( ). therefore, the reviews concluded that the benefits overhang risks. in particular, khan et al. recommended a careful selection of the patients, excluding patients with splenectomy, dog allergy, positive to mycobacterium tuberculosis, with pyrexia of unknown origin or infected with mrsa.( ) the guidelines about aai and pet-visitation agreed over the main key points, suggesting hand hygiene after all animal contacts and avoiding as possible contacts with animal bodily fluids( , – ). all animals used for aat must be selected carefully, avoiding the most dangerous species as reptiles and primates( ). moreover, animals must follow strictly veterinary health screenings, vaccine programs, and be specifically trained for these activities. to minimize the allergic risk, bathing and grooming animals 	 	 prior each session could be useful. after each session, routine cleaning protocols should be implemented. finally, inclusion of patients with severe immunosuppression, known allergy or animal phobia should be carefully considered, assessing benefits and risks( , – ). in particular, sehulster et al. reported the cdc guidelines for environmental infection control in health-care facilities, including a section regarding the safety of aaa and resident animals programs in healthcare settings. on the contrary, in their guidelines,( ) sehr et al. considered exclusively a program of private pet-visitation in hospital. in this case, the authors excluded immunocompromised patients, newborns and patients in post-anesthesia care units. moreover, the authors registered overall positive evaluations of the nurses regarding the guidelines implementation.( ) the work of jofrè et al. consisted in a review of guidelines, in order to achieve a consensus regarding animal use in healthcare settings. as well as underlining the importance of regular veterinary checks and strict sanitary protocols, the authors recommended to avoid the use of puppies in order to minimize the infection risk.( ) similar guidelines are adopted also in hospital implementation protocols( , ). in particular, these programs excluded all patients in post-operative period, with recent splenectomy or severe immunosuppression( ). silveira et al. reported the implementation protocol of an aaa program in a brazilian university hospital. this protocol included a wide range of potential employed animals, including dogs, cats, fishes, rabbits, reptiles and other rodents.( ) similarly, kobayashi et al. reported the board of nursery experience concerning the implementation of an aat project in a university hospital. in particular, the authors adapted the cdc guidelines to their specific setting.( ) discussion our review investigated the effectiveness and risks of animal assisted therapies in hospitals. our search revealed extremely heterogeneous results, in terms of settings, target population, type of intervention and considered outcomes. however, most studies focused on particularly frail population groups as children( , – ), psychiatric inpatients( , , – ) and elderly patients( , , , , ). the relationship with the animals can be extremely useful for these patients especially focusing on communication and social behaviours( , , ). in particular, considering psychiatric diseases, schizophrenic inpatients would benefit from animal contact considering schizophrenic symptoms, social relationships and aggressiveness( , , ). the reduction in aggressive behaviors was outlined, not only in psychiatric inpatients, but also considering general inpatients( ). the studies regarding adults were rare, but they considered different diseases including orthopaedic surgery and high-risk pregnancies( – ). even if dogs are the most studied animals( , , , – , – ), also other species are considered as cats( , ), fishes( ), cage birds( ) and horses( ). the prevalent use of dogs is explained by the easier training for therapy; however, also other species can be potentially beneficial. interestingly, the papers retrieved highlighted how “pet therapy” programs can be effectively implemented in a wide range of settings including emergency departments( ), long-term care facilities( ) and hospital wards( ). although all the interventions retrieved took place in hospitals or in long-term care facilities, the specific 	 	 location of the interventions differed. indeed, some interventions took place in the hospital garden( ) or in activity rooms specifically equipped( ), while others occurred directly in the ward( , ), or at bedside( , ). also considering the interventions’ characteristics, the results appeared variegated. inasmuch, the length of the sessions ranged from - minutes( , ) to different hours( ). moreover, some programs required multiple sessions( , , , ), while others included only a single session.( , ) these important organizational differences make extremely difficult to compare the retrieved intervention, and to draw clear conclusions. furthermore, not all the studies exactly described the specific train and formation of the couple animal-therapist or handler. about this, some studies declared to adhere and follow the “pet partners guidelines”.( , ) the aat interventions resulted, in accordance to their definition, more structured, organized in limited groups and conducted by certified therapists. on the contrary, the described aaa ranged from simple pet-visitation to spontaneous activities. in this case, the specific formation of the couple dog-handler is less described, and in one case, the dogs are accompanied only by the investigators, and not by the handler.( ) despite the wide range of outcomes considered, the studies retrieved outlined general benefits of aat or aaa in terms of psychological and physical effects. in particular, one common outcome explored was anxiety. positive effects on anxiety, measured using the stai scale or the profile of mood states survey, were detected for various pathologies as major depression( ), hospitalized children( ), elderly patients with acute heart failure( ) , high-risk pregnancies( ) and adult inpatients in different hospital departments( ). the favorable effect of aat upon anxiety symptoms on children was confirmed by parents and staff( ). in conclusion, the favorable impact on inpatient anxiety seemed assessed for a wide range of age and conditions. another frequently assessed outcome was depression. significant amelioration in depressive symptomatology was highlighted in psychiatric inpatients( ) and hospitalized women with at risk pregnancy( ). in addition, an improvement in depression symptoms, even if not statistically significant, was observed for elderly institutionalized patients with age-related diseases( ). the impact on depression required more in-depth analysis, especially considering the different scales used for its assessment. moreover, the pain (vas scale, faces scale or oral pain medication use) seemed to take advantage of animal therapeutic use in various conditions as post-orthopedic surgery( , ), hospitalized children in acute setting( ) and adult inpatient in different department( ). the effective role of canine assisted therapy on pain was outlined both in surgical and medical conditions. however, not all the studies were concordant regarding this outcome. indeed, barker et al. did not find any difference in pain between intervention and control group in children( ). besides, the effects of aai were assessed focusing on physiological parameters. the most assessed were blood pressure( , ), outlining a significant effect in decreasing this parameter, heart rate( , , ) and respiratory rate( , ). however, the effect on blood pressure was not concordant in all studies. indeed, cole et al. did not identify any significant change in this parameter( ). another positive effect outlined was the actual distance walked in patients with chronic heart failure( ). 	 	 therefore, the implementation of aai can be interesting in a wide range of age and pathologies, but further and more standardized studies are required to exactly assess the pathologies mostly benefited from these interventions. the main limitations were linked to the heterogeneity of the retrieved studies considering both the outcomes and the quality, making the comparison quite difficult. indeed, in accordance with previous reviews( , ), the previous cited findings are limited by the overall low quality of the retrieved studies. indeed, only few works were rcts. moreover, most of the included papers presented limited samples that could affect the overall results. therefore, more studies are required to completely describe the potential effects of aai. in fact, some studies lacked of a control group( , , , ), while others were pilot studies considering limited samples( , , ). moreover, some papers lacked of randomization( , ) or considered only parents or patients opinions( , , ).hospitals are particularly at risk settings, thus introducing animals has to be carefully considered. various studies explored these risks outlining infections, allergies and animal accidents as major issues( , – ). the potential risk of infections was outlined investigating the prevalence of infective agents in animals used for pet-visitation( , ). these studies outlined the potential risk related not only to typical zoonosis, but also to common human infections as mrsa( , ). however, reviews and guidelines suggested that the implementation of all security precautions could effectively minimize risks( , – ). therefore, the identification of patients receiving aai should be carefully conducted. some studies described in details the sanitary protocols adopted for the animals involved, including regular veterinary visits, vaccination documentation and assessments of controllability and temperament.( , , , , ) on the contrary, other works did not explicitly refer to any of these procedures. this matter represents another limitation of our review. indeed, detailed information regarding the health surveillance protocols are desirable in order to correctly evaluate the considered interventions. the extensive canadian survey regarding dog visitation highlighted how the infection control protocols result variable and occasionally potentially inadequate. in particular, the knowledge concerning the potential risks amongst the dog-handlers seemed insufficient.( ) consequently, a closer cooperation between hospital staff, aai-team, and veterinarians seems necessary. in addition, stricter controls about aai safety in the hospital are desirable. furthermore, the data regarding animal welfare during the intervention lacked in most of the studies. then, it would be interesting to further deepen this topic, investigating, also, any adherence to specific guidelines. another major concern was the acceptance of aai programs among healthcare professional. however, all studies considering this issue identified a general acceptance by the staff( , , ). conclusions in conclusion, aat or aaa for hospitalized patients seem useful and safe for a wide range of diseases. however, many aspects remained unclear, in particular regarding the type of intervention, safety, economic issues and diseases that would greatly benefit of these programs. finally, given the paucity of high quality works about this topic, it would be desirable to conduct more standardized studies considering in details outcomes and interventions in order to describe all the potential benefits and risks. 	 	 anyway, considering the intervention peculiarity, the reproducibility of randomized clinical trials could be difficult to achieve. 	 	 ethical statement: the authors declare that they have no conflicts of interest. this article does not contain any studies with human participants or animals performed by any of the authors. funding none. 	 	 references . levinson bm. pets and personality 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[development and implementation of animals-assisted therapy in a university hospital]. rev bras enferm. aug; ( ): – . . coughlan k, olsen ke, boxrud d, bender jb. methicillin-resistant staphylococcus aureus in resident animals of a long-term care facility. zoonoses public health. may; ( ): – . . lefebvre sl, waltner-toews d, peregrine a, reid-smith r, hodge l, weese js. characteristics of programs involving canine visitation of hospitalized people in ontario. infect control hosp epidemiol. jul; ( ): – . caption of illustrations figure : flowchart - the figure summarizes the selection procedures of our review. wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - : : if (typeof jquery === "undefined") document.write('[script type="text/javascript" src="/corehtml/pmc/jig/ . . /js/jig.min.js"][/script]'.replace(/\[/g,string.fromcharcode( )).replace(/\]/g,string.fromcharcode( ))); // // // window.name="mainwindow"; .pmc-wm {background:transparent repeat-y top left;background-image:url(/corehtml/pmc/pmcgifs/wm-nobrand.png);background-size: auto, contain} .print-view{display:block} page not available reason: the web page address (url) that you used may be incorrect. message id: (wp-p m- .ebi.ac.uk) time: / / : : if you need further help, please send an email to pmc. include the information from the box above in your message. otherwise, click on one of the following links to continue using pmc: search the complete pmc archive. browse the contents of a specific journal in pmc. find a specific article by its citation (journal, date, volume, first page, author or article title). http://europepmc.org/abstract/med/ introducing virtual reality therapy for inpatients with dementia admitted to an acute care hospital: learnings from a pilot to pave the way to a randomized controlled trial research open access introducing virtual reality therapy for inpatients with dementia admitted to an acute care hospital: learnings from a pilot to pave the way to a randomized controlled trial lora appel , * , erika kisonas , , eva appel , jennifer klein , deanna bartlett , jarred rosenberg and christopher smith abstract background: behavioural and psychological symptoms of dementia (bpsd) are difficult to manage, particularly in acute care settings. as virtual reality (vr) technology becomes increasingly accessible and affordable, there is growing interest among clinicians to evaluate vr therapy in hospitalized patients, as an alternative to administering antipsychotics/sedatives or using physical restraints associated with negative side effects. objectives: validate and refine the proposed research protocol for a randomized controlled trial (rct) that evaluates the impact of vr therapy on managing bpsd in acute care hospitals. special attention was given to ascertain the processes of introducing non-pharmacological interventions in acute care hospitals. methods: ten patients years or older (mean = ) previously diagnosed with dementia, admitted to an acute care hospital, were recruited over -month period into a prospective longitudinal pilot study. the intervention consisted of viewing -min of immersive ° vr using a head-mounted display. baseline and outcomes data were collected from the hospital electronic medical records, pre/post mood-state questionnaires, neuropsychiatric inventory (npi) score, and standardized qualitative observations. comprehensive process data and workflow were documented, including timestamps for each study task and detailed notes on personnel requirements and challenges encountered. (continued on next page) © the author(s). open access this article is licensed under a creative commons attribution . international license, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the creative commons licence, and indicate if changes were made. the images or other third party material in this article are included in the article's creative commons licence, unless indicated otherwise in a credit line to the material. if material is not included in the article's creative commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. to view a copy of this licence, visit http://creativecommons.org/licenses/by/ . /. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated in a credit line to the data. * correspondence: lora.appel@uhn.ca faculty of health, school of health policy and management, york university, toronto, ontario, canada openlab, university health network, toronto, ontario, canada full list of author information is available at the end of the article appel et al. pilot and feasibility studies ( ) : https://doi.org/ . /s - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf http://orcid.org/ - - - http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / mailto:lora.appel@uhn.ca (continued from previous page) results: of patients admitted during the study, met the inclusion/exclusion criteria. in total, calls were initiated to substitute decision makers (sdm) of the patients for the consenting process. nearly half ( . %) of sdms declined participation, and % could not be reached in time before patients being discharged, resulting in eligible patients not being enrolled. ten consented participants were enrolled and completed the study. the initial vr session averaged . min, largely due to the administration of npi (mean = . min). only four participants were able to respond reliably to questions. seven participants opted for additional vr therapy sessions; of those providing feedback regarding the vr content, they wanted more varied scenery (animals, fields of flowers, holiday themes). few sessions ( / ) encountered technical difficulties. conclusion: the pilot was instrumental in identifying issues and providing recommendations for the rct. screening, inclusion criteria, consenting, data collection, and interaction with sdms and hospital staff were all processes requiring changes and optimizations. overall, patients with dementia appear to tolerate immersive vr, and with suggested protocol alterations, it is feasible to evaluate this non-pharmacological intervention in acute care hospitals. keywords: non-pharmacological therapy, dementia, head-mounted display, interventional study, protocol, simulation, acute care, bpsd, virtual reality key messages on feasibility ( ) what uncertainties about feasibility existed prior to this study? there is growing interest in using vr-based thera- peutic interventions for people with dementia in differ- ent settings, including long-term care and rehab facilities, community care/private homes, and acute care hospitals. there was uncertainty about whether and how vr therapy interventions can be introduced and evalu- ated in acute care hospitals, where it was strongly de- sired for its potential to help deprescribe antipsychotics for the management of responsive behaviours and other symptoms of dementia. the following factors, among others, were challenging for the study feasibility in the acute care hospital: � nature of this fast-paced and busy environment, packed with daily medical tests and procedures with variable last-minute changing schedules � strict hygiene requirements for the vr equipment � hospital staff focused mainly on pharmacologic solutions (e.g. administering antipsychotics/ sedatives), � acutely ill patient participants with all stages of dementia, presenting with complex comorbidities and increased frailty, � substitute decision makers (sdms) not easily reachable to provide consent for patient participation during their hospitalization (usually a relatively short length of stay). � validated instruments for studying changes in patients with dementia were not designed for short stays such as in acute care hospitals ( ) what are the key feasibility findings from this study? the pilot was instrumental in identifying issues and providing recommendations for conducting the subse- quent randomized controlled trial (rct). screening pa- tients, inclusion criteria, consenting/ assenting, data collection tools, and interaction with sdms and hospital staff were among processes, materials, and protocols that required changes and optimizations. ( ) what are the implications of the feasibility findings on the design of the main study? a vr therapy intervention can be evaluated in acute care hospitals if suggested protocol alterations are imple- mented. overall, patients with dementia appear to accept immersive vr, and there is a need to conduct rigorous studies and establish guidelines to ensure reli- ability and consistency in evaluating vr interventions. our research team has since implemented the protocol changes resulting from the pilot study and we have suc- cessfully started recruitment for an rct at a teaching hospital in downtown toronto. background behavioural and psychological symptoms of dementia (bpsd) are common in individuals with dementia and are particularly difficult to manage in acute care settings. resident responsive behaviours have been shown to re- late to staff burnout levels [ ] which contribute to high absenteeism and turnover rate, low engagement, and higher risk of abuse or neglect incidents [ , ]. such appel et al. pilot and feasibility studies ( ) : page of workplace violence is a widespread problem that many health systems have struggled to manage [ ], and need for supports in the community is ever increasing [ ]. to date, most interventions used to manage bpsd in- clude medications (neuroleptic/sedating medications) and application of physical barriers and restraints (alarms, locks, buxton chairs, tethers), both of which raise ethical concerns and have been associated with hastening of cognitive and physical decline. several non- pharmacological approaches have also been tried with varying levels of success [ – ]. for example, multidiscip- linary care, massage and touch therapy, and music com- bined with massage and touch therapy were clinically more efficacious than usual care in reducing combined agitation and aggression, and outdoor activities were more efficacious than antipsychotics for treating physical aggression [ ]. an earlier review of the literature [ ] which studied the effectiveness among seven types of nonpharma- cological interventions for agitation in older adults with de- mentia (sensory intervention, social contact, activities, environmental modification, caregiver training, combination therapy, and behavioural therapy) found only “sensory inter- ventions” (aromatherapy, thermal bath, and calming music and hand massage) to be statistically significantly effective in reducing agitation. however, these have not been widely adopted; usually due to difficulties in implementation across the spectrum of care [ ]. articles exploring the research process of non-pharmacological interventions, such as hand massage [ ], music therapy [ ], or pet therapy [ , ] for patients with dementia discuss factors that affect the study protocol including intervention and environmental factors. their authors provide suggestions such as having multiple researchers and adding a qualitative component to record the participant’s reactions [ ]. virtual reality (vr) is a computer-generated or computer-simulated three-dimensional environment that synchronously stimulates our senses (vision, hearing, touch, smell) to create the illusion of reality that closely resembles the physical world. level of immersion has proven important in the application of vr for the treatment of phobias (acrophobia, aviophobia, arachnophobia), anxiety (social anxiety disorder, public speaking anxiety), panic dis- order, posttraumatic stress disorder, and substance abuse dis- orders (alcohol and nicotine), drawing principles from cognitive-behavioural and exposure therapy techniques [ ]. vr has also been used for physical and neuro-rehabilitation and pain reduction treatments [ ]. more recently, evidence suggests that vr therapy may alleviate stress, depression, anxiety, and feelings of isolation in institutionalized older adults [ – ]. however, most of these accounts are not grounded in systematic research and therefore do not result in high-quality evidence necessary for broader support, in- vestment, and implementation of vr as an alternative non- pharmacological intervention for managing bpsd. a growing number of studies show a connection be- tween exposure to natural environments (seeing greenery, hearing outside natural sounds) and better mental health. exposure to nature, even when virtually, results in benefits such as reduced depression, stress, and anxiety. virtual environments offer a methodology for presenting digitally recreated simulations of the real world with the potential of enhancing ecological validity while maintaining experi- mental control in social neuroscience research [ ]. given the growing interest in therapeutic vr, there is a consensus among leaders in the field that standardized evalu- ation methodology and implementation guidelines are sorely needed. a recent article, published by an international work- ing group in the field (virtual reality committee of out- comes research experts (vr-core)), recommends that vr trials follow a -phase framework based on the food and drug administration phase i-iii pharmacotherapy model [ ]. vr studies focus on content development by working with patient and provider end-users through principles of human-centred design; vr trials conduct early testing with a focus on feasibility, acceptability, tolerability, and initial clinical efficacy; and vr trials are rcts that evaluate clinic- ally important outcomes versus a control condition [ ]. while the vr-core group brings the necessary theoretical framework to conceptualize vr studies, gaps remain in the provisioning of detailed guidelines to aid with designing and conducting these studies. our study was aimed at document- ing the process, identifying challenges, and providing recom- mendations for conducting therapeutic vr studies for patients with dementia in acute care settings. the reflections of the investigators may assist other re- searchers to overcome obstacles in introducing and evaluating vr and other non-pharmacological interven- tions for people with dementia, both within acute and long-term care settings. objectives the primary objective of the pilot study was to inform the design of a subsequent rct and evaluate the feasibility of the proposed protocol. special attention was given to validat- ing enrollment and data collection processes (e.g. obtaining informed consent, conducting interviews with participants), validating proposed instruments (questionnaires, interviews, qualitative observation script), documenting issues with equipment, and identifying timing and personnel require- ments, including potential changes to clinical workflow. secondary objectives were to explore the tolerability, comfort and safety, and the impact on wellbeing (en- joyment, relaxation, engagement, reminiscence) of the vr intervention on patients with dementia admitted to an acute care hospital. the findings related to sec- ondary objectives are described in detail in another manuscript [ ]. appel et al. pilot and feasibility studies ( ) : page of research question given the current standard practices in acute care hospi- tals (including workflow, processes, materials, resources), is it feasible to administer vr therapy to inpatients with dementia, as a non-pharmacological therapeutic ap- proach to manage bpsd? methods design this prospective, longitudinal study was conducted at michael garron hospital (mgh), a community teaching hospital located in toronto, canada, in collaboration with openlab, an innovation centre at university health network. data were collected between july , , and october , , using a mixed-methods (quantitative and qualitative) research approach. from the electronic medical records (emr), the team collected physiological markers (e.g. blood pressure, heart rate, respiratory rate, blood glucose), delirium status, factors related to the hospital care experience (instances of wandering, insom- nia, pressure ulcers, falls), hospital length of stay, dis- charge disposition, in-hospital mortality, demographics, and diagnoses (cognitive assessments, comorbidities, general health history). in addition, the research team conducted pre- and post-vr mood state questionnaires, npi, and recorded qualitative observations during the study sessions. a modified version of the state-trait anxiety inventory (stai y) [ ] was used to collect in- formation about participant’s current state of anxiety pre- and post-intervention. post vr therapy, open-ended questions were asked to capture feedback about any dis- comfort experienced: whether the head-mounted display (hmd) was too heavy, if it applied too much pressure on their head, face, or nose, and sound quality and image focus. a modified version of the music in demen- tia assessment scales (midas), developed and validated to evaluate music therapy for people with dementia [ ], was completed by the research coordinator (rc) to as- sess whether there were observable changes in the par- ticipant’s mood/behaviour and engagement (e.g. interest, response, enjoyment) while exposed to vr therapy. the rc recorded any vocalizations, changes in facial expres- sions, breathing patterns, gestures, body movements, and level of activity. caregiver feedback regarding par- ticipant response to the vr intervention was also re- corded. this included caregiver insights as to why participants reacted in certain ways to certain vr films. ethics approval was received from mgh research ethics board (reb ref - -mis- dated june , ); informed consent for study participation was ob- tained for all participants through their sdms, and assent was obtained prior to each study session from participants themselves. participants participants were screened and recruited sequentially, daily within a -month period (excluding weekends and statutory holidays). inclusion criteria required that par- ticipants were aged years or older, with documented diagnosis of dementia, and admitted as an inpatient at mgh. patients were excluded if they had open facial wounds, cervical conditions that would make use of a vr headset unsafe, or no contactable substitute decision maker. table describes baseline demographic and clin- ical characteristics of the ten recruited participants. ten participants were considered sufficient for this pilot as we were validating study protocol and were not seeking statistical significance of clinical outcomes. screening all new admissions to general internal medicine (gim) of patients over the age of were screened by the research coordinator (rc). a number of potential participants were deemed “for review” after screening, and a further assess- ment of eligibility was performed by a study physician shortly after admission. the purpose of this review was to revisit the patient’s electronic medical record to look for additional documentation that might clarify if the patient was eligible for the study, in case a new diagnosis was made by a physician during the hospital stay, for example, a patient may be admitted with confusion and a history of memory impairment but has no evidence of a diagnosis of dementia documented in their emr. potential participants were unknown to the rc prior to recruitment. informed consent this pilot study recruited patients deemed cognitively able to provide consent based on the assessment of the patient’s healthcare providers at the study site, and/or patients deemed unable to consent and have an sdm who can legally consent on the patient’s behalf. the con- sent process followed ontario’s legislation [ ], and the hospital provided a brochure [ ] to help patients and families understand the different roles involved in deci- sion making on one’s behalf. a previously documented capacity assessment determining that the potential par- ticipant is not competent to provide consent was respected. for potential participants for whom there was no record of capacity assessment, capacity for giving consent was obtained as per the study site protocol. the sdms of patients meeting the inclusion criteria were contacted over the phone to be introduced to the study. they were contacted by the rc, typically in the morning, fol- lowing the screening process using an mgh office phone. sdm contact information was found in a distinct section of each patient’s emr. the rc also reviewed the admission his- tory and most recent physician-written progress notes to appel et al. pilot and feasibility studies ( ) : page of table demographic and baseline information participants (n = ) frequency age (years)a . ( . ) gender male female dementia type diagnosis mixed dementia alzheimer’s dementia vascular dementia frontotemporal dementia dementia stages mild moderate advanced unspecified delirium diagnosis no delirium sub-acute acute chronic unspecified primary language english greek/macedonian bengali chinese current living state home alone home with family member(s) retirement home/independent living assisting living/long-term care other relationship status single married separated widowed other education elementary school high school or equivalent college post-graduate degree appel et al. pilot and feasibility studies ( ) : page of obtain the most up-to-date contact information for the sdm. in the event of discrepancies between the sdm con- tact information section of the emr and the notes entered manually by physicians, the latter was considered more reli- able and up-to-date. the rc then obtained informed consent from sdms in person after answering all questions presented over the phone and in person. in addition, the rc obtained assent from every participant at the beginning of each study session. study sessions were scheduled at times that did not interfere with participants’ treatments or tests at the hospital. intervention the intervention consisted of a vr session where partic- ipants viewed immersive vr experiences (vr films) for a maximum of min; there was no minimum time re- quirement. participants wore a samsung gear vr head- mounted display (hmd) and sennheiser hd head- phones. the hmd was equipped with a personal remov- able hygienic foam insert purchased from vrology [ ] for each participant to use throughout the study. a nurse, informal caregiver, or rc helped the participants sit up in their hospital room bed, and the rc helped them put on and remove the hmd and headphones (see fig. ). all participants viewed the same ° vr experience, con- sisting of a sequence of five nature films (see fig. ) on a loop lasting a total of min, as follows: min of a rocky lakeshore, min of a sunny forest, min of a dense forest, min of floating icebergs, and min of a sunny beach. data collection evaluation of study protocol feasibility (primary objective) in an effort to capture a comprehensive and detailed sum- mary of the research process including task sequence and timing requirements for each step, the research team re- corded the time stamps at the beginning and end of each study task (e.g. time arriving on/leaving off the ward, time starting/stopping vr therapy). qualitative observations made by the rc regarding hospital staff availability versus expecta- tions / requirement, and other workflow difficulties encoun- tered were also tracked by the rc (e.g. availability of the table demographic and baseline information (continued) participants (n = ) frequency vision devices glasses none hearing devices hearing aid (both ears) none major auditory/visual condition total deafness deafness (one ear) none head mobility almost immobile limited normal body mobility almost immobile limited normal mobility aids cane walker wheelchair multiple mobility aids amean (sd) appel et al. pilot and feasibility studies ( ) : page of nurse/ward clerk, time to speak to the nurse/ward clerk, rea- son for not obtaining assent, delays related and unrelated to technology, and miscellaneous comments). once the pilot was complete, the research team met to review the collected data and identified the variables affecting feasibility to an ex- tent that could negatively impact the success of conducting the subsequent rct. these variables were grouped into three categories: processes, materials, and resources. “process” requirements refer to changes in research study tasks or the means and methods by which tasks are achieved, for example, the way in which screening patients for inclusion/exclusion criteria is conducted, how to con- tact effectively and efficiently the sdms, and how to ob- tain informed consent in a more timely manner while ensuring an ethical process. process requirements were further sub-divided into ( ) screening and consenting tasks and ( ) conducting the vr study sessions. elements categorized into “materials” requirements addressed changes to equipment or instruments, either related to the vr technology hardware (hmd) or soft- ware (films), or the study data collection (e.g. number of questions in the survey, amount of data points collected from the emr). finally, “resources” requirements include the amount of time and materials required to complete tasks, personnel that need to be consulted (e.g. nurses, ward clerks), and elements of the hospital environment needed in order for the intervention to take place. in this manuscript, we report on the findings and pro- vide recommendations for changes to the research protocol to achieve a feasible rct that evaluates vr therapy in the acute care hospital, focusing on the pro- cesses, materials, and resources. evaluation of vr intervention /proof-of-concept (exploratory objective) the research team collected data from participants and their caregivers (if present) during study sessions using structured and semi-structured pre- and post-intervention questionnaires, observations following a guided script, and the -item neuropsychiatric inventory. other participant data for the study were collected from the emr, including physiological markers, delirium status, factors related to the acute care hospital care experience, length of stay, dis- charge disposition, in-hospital mortality, cognitive assess- ments, comorbidities, and general health history. the data collection tools and associated clinical outcomes are de- scribed in detail in a different article [ ]. results process screening an average of . patients were admitted to the mgh gim department every day of the study period; of these, a significant number (mean = , sd = . ) were on the first day of the work week. an average of . patients were screened every day of the work week, with the ma- jority ( %) being screened on the first day of the work week. average time to screen one patient was . min. of the patients admitted during the study period, were over the age of . of those, screened not eligible for the study, screened eligible, and were fig. example of participant trying the vr experience. a nurse, informal caregiver, or rc helped the participants sit up in their hospital room bed, and the rc helped them put on and remove the hmd and headphones. written, informed consent was obtained from the individuals for the publication of this image fig. d screen capture of two of the five vr scenes (scenes : open field with foliage and : aquamarine beach). all participants viewed the same ° vr experience, consisting of a sequence of five nature films appel et al. pilot and feasibility studies ( ) : page of deemed “for review”. the patients deemed “for review” were those admitted to the hospital without a previously established diagnosis of dementia and presenting symp- toms that could be attributed to either dementia and/or delirium. after review, a total of patients were eligible for the study. (see the recruitment flow diagram (add- itional file) for the overall results of the screening and enrolment process) the study team observed during the pilot a screening limitation due to missed diagnoses of dementia in pa- tient admission histories at the time of screening. for example, if a diagnosis of dementia was input into the emr after the patient had already been screened by the rc, the patient represented a false negative (ineligible) screen and was excluded as study participant. with the available research staff (between one and three re- searchers) on site to complete all study activities, it was not feasible to re-screen all patients who initially screened not eligible; thus, a number of potential partici- pants may have been lost to the study. capacity to provide consent at the time of screening, all prospective participants had either no previously documented capacity assess- ment or had a capacity assessment determining that they were not competent to provide consent. one prospective participant had a documented capacity assessment deter- mining that they were competent to provide consent at their baseline, but not in their current condition. upon speaking to an sdm, one prospective participant had the capacity to provide consent, which was confirmed by the potential participant’s nurse. informed consent a total of phone calls were initiated by the rc to the sdms of the eligible patients. a total of of these calls ( %) resulted in an answering machine. when sdms were not available to meet in person on the same day as the initial phone call, the research co- ordinator offered to email them the informed consent and assent forms, if they were willing to receive/review these documents. of the eligible patients, were not enrolled into the study, for the following reasons: the sdm declined participation ( %), the patient was discharged before the sdm could be contacted ( %), the patient was dis- charged before the sdm responded regarding participa- tion ( %), sdm reported the patient did not have an official diagnosis of dementia ( . %), the patient had been admitted previously and sdm had declined ( . %), and the patient passed away ( . %). of the sdms who declined participation for their patients, their reasons for decline were as follows: sdm believed the patient’s overall health at the time was too poor ( %), sdm was unable to physically come in to hospital ( %), sdm was not interested in the study/re- search ( %), sdm stated that the patient was not inter- ested ( %), sdm thought the patient would not tolerate the headset (cataracts, irritability, poor reactions to touch) ( . %), and significant sdm/patient language barrier ( . %). of the ten patients for whom sdms consented to par- ticipation and were enrolled, none withdrew early from the study. four of the ten sdms were sent electronic copies of consenting documents and were instructed to read the documents and prepare any questions/concerns they have about the study before meeting with the rc in person. the informed consent process with sdms in person took an average of min, and was considerably faster (by min) when sdms were emailed the con- sent/assent documents beforehand (average = . min) compared to when they were given the documents to read for first time at the hospital (average = min). vr sessions participants had their first study session an average of days after being admitted to hospital. four of the initial study sessions took place in the first days after admis- sion, three took place to days after admission, and three took place or more days after admission. an average of . calls or call attempts to the participants’ sdms were made in order to arrange the initial study session. for the large majority ( participants), the in- formed consent was signed at the beginning of the initial study session. for one participant, the informed consent was signed days before the initial study session oc- curred. this was because the planned initial study ses- sion was postponed days due to the participant’s condition—the sdm stated that the participant “hasn’t opened [their] eyes for hours” and was not at their base- line because they had not slept the night before. upon entering the room for a vr session, participants were occasionally resting or asleep. if the participant did not rouse after the rc knocked on the door and called their name, the rc left the ward and returned at a later time. the majority of participants ( ) opted for additional sessions of vr therapy during their stay in hospital. un- fortunately, only three were actually able to participate in these additional sessions, while the remaining four could not continue to participate due to transfer to complex continuing care ( ), discharge from hospital ( ), scheduling difficulties with sdm ( ), and expiration ( ). therefore, the majority of participants ( ) had only one (the initial) session of vr therapy. for additional sessions, the average length of time participants viewed vr films was . min. appel et al. pilot and feasibility studies ( ) : page of the day of discharge is typically very busy with tasks that involve the patient and caregiver in patient-oriented summarization, such as information review regarding the hospitalization and discussion of important medication changes and chronic disease management points. in addition, for many patients with dementia, some form of home service organization and transportation arrangement is required. conducting study sessions on the day of discharge proved to be difficult to schedule around these tasks and could have been disruptive to discharge planning. materials data collection tools all study data for the pilot were recorded on paper, then transferred to an excel document that was updated iteratively. quantitative data the average length of the initial study session (data collection and vr exposure) was . min. this was largely due to the administration of the npi, which took an average of . min. the -item npi was used as a baseline patient-specific metric of bpsds and was administered to an informed caregiver, ideally an individual who lives and/or spends the most time with the patient. the informed caregiver was typic- ally the same person as the sdm and was a family mem- ber of the participant in out of cases. the validated tool contains questions about changes in the patient’s behaviour that have appeared since the onset of demen- tia and have been present for the past to weeks. the average length of additional study sessions, in which the npi was not collected, was min. checking the participants’ current medical condition and daily schedule (heart rate, blood pressure, and blood glucose measurements) was not a timely endeavor, tak- ing an average of . min and . min respectively. cer- tain clinical measures, like the daily confusion assessment method (cam) score that was used to de- termine presence of delirium, were not consistently re- ported. similarly, montreal cognitive assessment (moca) and mini-mental state exam (mmse) scores, which are used to assess cognitive impairment, were in- frequently recorded. moreover, various tools were used (e.g. one person had mmse, moca, from various years, one person had one sub-scale from a mini-cog screen, one person had a depression measure)—and there was not enough overlap to meaningfully determine cognitive status even amongst the individuals who did have scores in their emr. therefore, we decided to categorize cogni- tive status based on the terminology used by physicians in their notes (mild, moderate, advanced). pilot data on instances of bpsd during the hospital stay were collected for each participant on hospital dis- charge, by examining the nursing notes and counting the total number of bpsd instances during patients’ en- tire hospital stay. first, the rc recorded and briefly de- scribed instances of bpsd using the terms recorded by nurses in the emr. the team’s geriatrician then used this list to iteratively generate a set of categories to be used for recording instances of bpsd: � agitation, � refusing/declining medical care, � violent behaviour towards staff or other patients, � wandering, � vocalization, � insomnia, � mood symptoms, � disorganized thought or content, � perceptual disturbances, � additional falls precautions applied, and � sitter/pcs/psw at the bedside. instances of bpsd were then collected again by the trained rc using these coded categories. when unfamil- iar terms were found in the nurses’ notes, the rc con- sulted the geriatrician to correctly assign the instance to its corresponding category. qualitative data we collected qualitative data relating to the participant’s vr experience using semi-structured interviews. four participants could consistently respond reliably to the questions, one was able to respond in their first session and then had delirium halfway through their stay and was unable to respond reliably. the remaining five patients had difficulty answering ques- tions about their mood before and after vr therapy. the rc often relied on caregiver input and participant body language to make educated estimations of participants’ moods. some feelings/moods were impossible for ob- servers to estimate (e.g. feeling adventurous) while others were usually possible (e.g. feeling tired, feeling en- ergetic). different sources of qualitative information con- tributing to the same outcome measure made statistical analysis challenging, as much of it was recorded in un- structured text as “other comments”. additionally, the number of contributing sources varied between partici- pants and across sessions within same participants. equipment/devices hardware/software performance of the sessions conducted, technical difficulties were experienced in a minority ( ) of sessions; two due to difficulty synchron- izing the smartphone with the hmd, one due to the clips on the hmd falling off which made the phone fall out, and one due to difficulty reducing the volume of the appel et al. pilot and feasibility studies ( ) : page of audio (so in this case, headphones were not used, audio played directly from the phone). image quality was reported by participants as good at of the sessions, for the remaining participants were not able to provide feedback. sound quality was reported as good at of the sessions; in five sessions, partici- pants were not able to provide feedback; and in one ses- sion, the volume was too loud despite being played from the phone rather than through the headphones. there were no difficulties in fitting the vr hmd and headphones in sessions; in one session, the head- phones slipped off, and in one session, the hmd was slipping down the participant’s face despite tightening the straps. safety, tolerability, and enjoyment clinical outcomes are reported in detail in a second paper, but overall, for the majority of sessions, participants were engaged while in vr, responding with some or substantial vocaliza- tions. researchers reported that at most sessions, partici- pants appeared to enjoy the vr experiences and the majority resulted in relaxation. only one of the ten par- ticipants experienced a negative side effect, which was minor, resulting in temporary feelings of dizziness and nausea. after the vr session, this participant was not averse to trying additional sessions, but their sdm de- cided against this. participants who were able to provide feedback ( ) in- dicated that the vr content they would enjoy viewing in the future should include animals in nature, fields of flowers, the ocean, and christmas-themed scenes. resources resource requirements refer to any environmental needs and personnel that are not part of the study or the re- search team but are indispensable for ensuring the ef- fective and efficient conduct of the study. this includes aspects of the patient’s hospital room (e.g. hospital bed, chairs), infection control materials available on the ward (e.g. disposable masks, hydrogen peroxide wipes), and hospital staff to be consulted by a member of the re- search team (e.g. nurse, ward clerk). for the purpose of this study, the patient’s current condition was obtained from the primary nurse (the nurse assigned to the patient). this was done to ensure timely, accurate, and up-to-date information about the patient’s condition. if the participant’s primary nurse was not available, the next most responsible nurse was the “team lead”. finally, if the team lead was not avail- able, we resorted to asking for the nurse covering for the primary nurse. there was one occasion when finding a nurse responsible for the participant took several mi- nutes due to multiple nurses being on break and the participant residing in a ward unfamiliar to the rc. the nurse assigned to the patient was consulted prior to each session to ensure the patient is stable and they are otherwise able to participate in a vr session. the nurse was also asked for information pertinent to the re- searcher, which can include a safety check for aggressive or violent behaviours or planned care in the next half hour. the nurse was also consulted for information re- garding changes from baseline that may indicate under- lying delirium. asking specific and directed questions were found to be the most effective and least time con- suming for the nurse. again, a proper introduction of the researcher’s position, role, and their request of the nurse upfront allowed the nurse to quickly understand the context. the questions that we found were most ef- fective to elicit the information we were looking for in- cluded “are the patient’s vitals stable?”, “is there any reason why you think the patient could not participate in a vr session” (explaining what the session entails if needed), and “is there anything else we should know about this patient”. before each session, the ward clerk was also consulted to ensure the patient’s schedule was clear so that the vr session would not interfere with patient care. ward clerks were most receptive when researchers identified themselves as a research coordinator, with which study, and which local principal investigator. this was usually a quick process; factors slowing down this stage included the clerk being unfamiliar with the rc/ study, or if the clerk was currently attending to the phone or another person. the latter cannot be avoided, but to improve the former, we found that a thorough introduction was helpful. additionally, once known to the clerk, re-introduction before each session was not necessary. discussion process screening as a significant number of new patients appear on the first day of the work week, we recommend that add- itional time is dedicated for screening that day. a challenge that frequently arose during screening was determining the inclusion of patients admitted with “query dementia versus delirium”, who were potential participants without a formal diagnosis of dementia. the process used during the pilot for these patients (deemed “for review”) will be revised for the rct, to include an additional step to make this determination, by request- ing a geriatrics consult where appropriate. when the rc screens an individual without a previous diagnosis of de- mentia but who shows possible signs of dementia (ex. admitted with confusion, has a history of memory loss, has become less independent with adls/iadls), the rc will contact the principal investigator (pi), an internist at appel et al. pilot and feasibility studies ( ) : page of mgh, who will review the patient’s history. if the pi de- termines that the patient may indeed have dementia, they will contact the patient’s most responsible physician (mrp) about this clinical question. if the mrp considers appropriate, they will then order a consult with a geria- trician to determine if a diagnosis of dementia can be made. if these patients receive a diagnosis of dementia, it expands the pool of potential study participants. an additional screening limitation observed during the pilot was diagnoses of dementia omitted from patient admission histories or consult notes at the time of screening. this resulted in false negatives and excluded potential study participants. this issue was still unre- solved at the time of designing the subsequent rct. conducting the pilot highlighted new screening con- siderations due to potential interactions between the vr technology and common comorbidities. thus, additional exclusion criteria will be introduced for the rct in order to avoid unnecessary risk and focus on an appro- priate patient population. for example, patients with a history of seizures or epilepsy will be excluded from the rct based on the oculus go health and safety warnings which notes that some people ( / ) experience sei- zures triggered by tv, video games, or vr [ ]. al- though the health and safety warnings note that these seizures are more common in children and young adults, clinical judgments of an internist and a geriatrician at the hospital (members of the research team) led the study team to place “patient history of seizures or epi- lepsy” on the list of exclusion criteria. for similar rea- sons, patients with a pacemaker will be excluded from the rct. the oculus go health and safety warnings note that the headset and controller “may contain mag- nets or components that emit radio waves, which could affect the operation of nearby electronics, including car- diac pacemakers, hearing aids and defibrillators” [ ]. they recommend that individuals should consult their doctor or the manufacturer of their pacemaker before using the headset or controller. the study team dis- cussed the health and safety warnings and concluded that for the rct, it is more appropriate to exclude pa- tients with pacemakers since this was considered the saf- est approach (also it would be impractical to individually check with the mrp and/or the device manufacturer for each model of pacemaker). hearing aids are another medical device with potential for interference with the vr hmd according to the oculus go health and safety warnings [ ]. however, due to low potential risk (i.e. transient static or whistling sounds) and previous research in this population finding no negative outcomes due to hearing aid interference, the research team chose to include patients with hearing aids. finally, patients with head trauma or stroke leading to the hospital admission will be excluded from the rct due to possible light sensitivity, which can be triggered by the visuals in vr, and hemiparesis, which can affect their ability to experience vr and ° movement. consenting during the pilot, many sdms were not available to come to the hospital in person; approximately % of all sdm declines to participate were due to the inability to phys- ically sign the informed consent form, which was a re- quirement per the pilot study protocol. to ensure a timely consent process for the rct, the team suggested adopting a verbal consent process as well as offering to email the informed consent/assent forms to the sdm. emailing the documents will give sdms time to review them at their leisure and, if they wanted to, time to dis- cuss the study with other people/decision makers. of note, the research team received ethics board approval to use a verbal consent script to obtain informed con- sent over the phone for the subsequent rct. the pilot study employed a shared model of consent, where the sdms provided informed consent and partici- pants assented to the intervention at the beginning of each session. an important finding from the pilot was that some participants were unable to verbally commu- nicate their assent due to cognitive state and/or a lan- guage barrier. we recommended to revise the assent process for the rct to record physical signs of assent/ dissent when the participant cannot communicate ver- bally. the informed consent and assent forms for the rct will be simplified and improved upon from a plain lan- guage perspective (permission for reuse of these forms may be provided by contacting the authors). important additions to the rct informed consent form involve in- cluding descriptive pictures (vr hmd, disposable facial covers, sample nature scenes) and documenting the possi- bility of interference of the vr hmd with hearing aids. a finding during the pilot was that the emr field spe- cifically designated for documenting the sdm and their contact information was not always accurate. for ex- ample, this field has been marked as “no sdm”, while the sdm’s info was recorded in the “alternate contact” field. in another couple of instances, family members have been disputing sdm/poa status. ultimately, we found that the physician consult notes were more accur- ate. we recommend for the rct that the rc consult the most recent physician notes from the current admis- sion to ensure they are contacting the appropriate deci- sion maker. also, if the sdm is not available upon the first contact attempt, the rc should identify and attempt to contact the alternate contact (if applicable). although sdm language barrier was not a common reason for non-participation, there were several cases where the sdms with language barriers gained basic un- derstanding of the study with the help of other family appel et al. pilot and feasibility studies ( ) : page of members who could translate for them. it is important to check and confirm with the hospital’s ethics board whether another family member can help the sdm translate informed consent materials from english into their language. more than a quarter of all “declines” were due to the sdm believing the patient’s current state of health was too poor. for the rct, to ease these concerns, the re- search team will report the results of this pilot study, where the headset was well tolerated by all participants including the acutely ill patients. the rc will be advised to also direct sdms to the study’s website [ ] that pro- vides additional information and demonstrations of the vr device. vr sessions during the pilot study, if upon entering the room for a vr session, participants were resting or asleep and did not rouse when the rc called their name, the rc left the ward and returned at a later time. after reviewing this approach for the rct, the research team decided that, in order to promote activity during the day in an effort to reduce wakefulness and wandering overnight, participants should be woken up if they are asleep when the rc visits them for the study sessions. before vr therapy, participants will be asked questions like “how are you feeling today?” and “how did you sleep?” to gauge their mood and stimulate a conversation with the rc. during the pilot, it was very difficult to schedule study sessions on the day of discharge and was potentially dis- ruptive to discharge planning. for the rct, the research team decided to not knowingly conduct study sessions on the day of discharge. finally, of the seven participants who opted for add- itional sessions of vr, only three were actually able to participate in additional sessions. for the rct, some of the obstacles will be removed by adopting verbal in- formed consent from the sdms, which will likely result in a faster enrolment process and therefore starting the study sessions earlier into the hospital admission. materials data collection tools/instruments for the pilot, we collected and analyzed data using ms excel. while this approach worked for the small size pilot sample, a critical requirement made for the rct was to collect/record all study data using a secure web application specifically designed to manage research da- tabases that complies with local personal health informa- tion storing and sharing standards (e.g. hippa). all efforts should be made to eliminate redundant data col- lection and reduce the likelihood of human error due to repeated data entry. as cam scores were performed on an inconsistent basis and did not always accurately reflect a patient’s de- lirium status, the study team decided to abandon the cam in favour of physician notes from the emr and nurse impressions of delirium progression before each session. similarly, because the severity of dementia (e.g. mild, moderate, advanced) was infrequently found in the emr, for the rct this will be determined from a com- bination of any available cognitive assessment scores (e.g. moca and mmse) and dementia severity if re- corded in the emr. recording all heart rate, blood pressure, and blood glucose measurements taken during the hospital stay for the pilot study participants proved to be superfluous. changes recommended for the rct were as follows: blood glucose will no longer be recorded as it is very in- frequently measured in patients without diabetes and would be difficult to claim statistical significance without controlling for mealtimes. additionally, heart rate and blood pressure measurements will only be recorded twice daily, once around : and once around : , to provide a manageable data set that can be used to es- tablish vital sign trends for both arms of the rct. significant modifications were recommended for the instruments used to detect changes in bpsd during the hospital stay. firstly, new categories were created by the team’s geriatrician during the pilot, to help group bpsd instances collected from the nurses’ notes in the emr. these categories will be used to determine the types and frequencies of bpsds in the subsequent rct. for the rct, the study team also recommended to replace the npi with the e-behave-ad [ ]. although caregivers from home may be able to give informed feedback at the beginning of the hospital stay, they likely cannot spend enough time at the hospital to reflect on changes during the patient’s stay. also, with the addition of a remote (verbal) informed consent process, the rct is likely to include caregivers with very limited time available to visit the patient. a variation of the npi, the neuropsychi- atric inventory - nursing home (npi-nh), is adminis- tered to professional caregivers (e.g. nurses) but was designed for patients in extended care facilities rather than acute care. the e-behave-ad is an observational evalu- ation of bpsd following a brief -min conversation with the patient. it can be conducted by a member of the re- search team, has high inter-rater reliability, and requires minimal training. the use of chemical and physical re- straints, collected from the emr, will also be used to de- tect changes in bpsd during the hospital stay. finally, we found that % of the pilot participants had difficulty answering questions about their mood be- fore and after vr therapy, and the rc often relied on caregiver input and participant body language to make educated estimations of participants’ moods that they appel et al. pilot and feasibility studies ( ) : page of recorded as being communicated by participants them- selves. to overcome these challenges in the rct, the study team will replace this combination of participant- caregiver-research coordinator-reported outcomes about feelings and mood with distinct questions targeted at each source (i.e. participant, or rc). participants will be asked fewer questions in total with a greater focus on simple, open-ended queries. the smiley-face assess- ment scale will be provided if the participant has diffi- culty verbally expressing themselves. this conversation with the participant will provide the rc with time to ob- serve the participant and score the e-behave-ad and in-hospital quality of life observational scale (adapted from the quality of life in late-stage dementia (qua- lid)). relevant, unprompted caregiver comments will be recorded separately. lastly, as per the suggestions of the participants, we will expand our vr film offering for the rct to include a greater diversity of experiences that they can request at each session. for example, we will add live music scenes featuring classical music, scenes featuring people walking around, and scenes featuring animals. equipment/devices delays related to the vr devices were largely due to dif- ficulty synching the phone and the hmd. to avoid this issue and for other ease of use reasons, for the rct we plan to use the oculus go hmd. unlike the samsung vr hmd used for the pilot, the oculus go is a standa- lone device that does not need an attached cell phone to act as a screen. the samsung gear vr hmd was well tolerated by the participants and was reported to be comfortable by seven out of ten participants ( partici- pants were unable to answer). the oculus go hmd is predicted to be equally or more comfortable and well- tolerated as it is also more glasses-friendly and weighs even less than the samsung gear vr hmd ( g and > g respectively). few challenges arose related to the hmd comfort and fit. there were two sessions where the adjustable head straps were ill-fitting and resulted in the hmd slipping down the participant’s face. compared to the samsung gear vr, the head straps on the oculus go are larger with greater support for the back of the head. we pre- dict that this will help prevent the issue of the hmd slipping down the face. from an infection control perspective, the oculus go hmd differs from the samsung gear vr hmd in that the default facial interface is porous fabric as opposed to non-porous plastic. the study team purchased an “oculus go starter pack” from the company “vr cover” which contains a wipeable and machine-washable cus- tom facial interface, a wipeable polyurethane leather fa- cial cushion, and disposable stick-on hygiene covers. the facial interface and facial cushion will be wiped with hydrogen peroxide wipes available on the ward. the hmd head straps will be replaced if/when they wear down. the study team consulted the mgh infection prevention and control (ipac) team and received ap- proval to use these products when sharing the hmd across all patients, even those with infection control pre- cautions in place. only one of the ten participants in the pilot study ex- perienced dizziness and nausea due to the vr films. such symptoms can likely be avoided by moving the head slower, and fixating the eyes on one point of the vr environment while turning the head. in the rct, these recommendations will be communicated to partic- ipants before or during the vr session as necessary. resources an observation related to resources that needs emphasis for the rct is the importance for research staff to intro- duce themselves to ward staff, for several reasons, in- cluding security, and to create a good rapport. nurses are urged to ask people they do not recognize for identi- fication, so research staff can be proactive by offering this information. to avoid delays related to the ward staff workflow, we found that it was helpful to become familiar with the unit including the clerks, nurses, and their schedules. when known, it is preferable to avoid visiting wards during nursing break times. outstanding issues (identified and still needing resolutions) while the authors provide suggestions that address the majority of issues that arose during the pilot trial, a num- ber of challenges remain. a screening limitation that was observed during the pilot for which no change has been suggested yet, was the missed diagnoses of dementia in patient admission histories. for example, if a diagnosis of dementia is input into the emr after the patient had already been screened by the rc, the patient would be a false negative (i.e. ineligible for participation in the study). without re-screening, all patients initially screened nega- tive—which was found not feasible—a number of potential participants may be lost to the study. during the pilot, close to half of all calls made by the rc to sdms resulted in an answering machine. unfortu- nately, this is an unavoidable barrier to recruitment, as it is not best practice to leave voicemail messages for re- search purposes. limitations as this was a pilot study with the goal of refining the re- search protocol for the subsequent rct, it only included ten patients, and thus findings and suggestions must be interpreted with caution. furthermore, the randomization appel et al. pilot and feasibility studies ( ) : page of protocol was not tested and may introduce new challenges that have not been uncovered in the pilot. the hospital processes, tools, and resources used in this study are those of mgh, a community teaching hospital located in toronto, canada. although many of the general principles are generalizable to other acute care hospitals, some practices/processes may be very specific to this hospital and not applicable to other set- tings. introducing non-pharmacological therapeutic in- terventions should be tried and evaluated in different other acute hospitals to ensure generalizability of the outcomes. another difficulty encountered in the pilot was related to participants not being able (for various reasons) to have additional vr sessions beyond the initial one, even though they have opted for more vr sessions. therefore, although the intent of the study was to measure out- comes from a number of vr sessions during their hos- pital stay, the majority of participants had only one session of vr therapy. conclusions vr technology has shown promise in healthcare in phobia management, pain reduction treatment, and physical/ neuro-rehabilitation; while there are reports on the bene- fits of using vr with individuals with dementia, it has not been widely used or rigorously evaluated as a therapeutic intervention for managing bpsd and improving quality of life. this pilot study showed that overall, patients with dementia appear to tolerate immersive vr, and that it is feasible to evaluate this non-pharmacological intervention in acute care hospitals. the findings from our pilot study identified issues and brought specific suggestions for the design and conduct of the rct, which will be the first to rigorously evaluate the impact of immersive vr therapy using hmd, with patients at all stages of dementia, in an acute care hospital setting. any deployable, scalable, non-pharmacologic solution to bpsd would go a long way helping dementia patients and their caregivers. while vrx may be one answer, this pilot has also provided methodological foundations that could be used for introducing and evaluating other non- pharmacological therapies into acute care hospital set- tings, as well as across other conditions, such as delir- ium, mild cognitive impairment, and stroke. supplementary information the online version contains supplementary material available at https://doi. org/ . /s - - - . additional file . abbreviations adl: activities of daily living (katz index of independence); iadl: instrumental activities of daily living (lawton scale); bpsd: behavioural and psychological symptoms of dementia; cam: confusion assessment method; emr: emergency room; gim: general internal medicine; hmd: head- mounted display; ipac: infection prevention and control; mgh: michael garron hospital; mmse: mini-mental state exam; moca: montreal cognitive assessment; mrp: most responsible physician; npi: neuropsychiatric inventory; npi-nh: neuropsychiatric inventory - nursing home; pi: principal investigator; poa: power of attorney; qol: quality of life; qualid: quality of life in late-stage dementia; rc: research coordinator; rct: randomized controlled trial; sdm: substitute decision maker; vr: virtual reality acknowledgements we would like to thank the michael garron hospital foundation, the centre for brain health and innovation, and donald j. matthews foundation for their generous support. we are grateful to codrin talaba for working with our research team to film, edit, and provide the vr experiences for this study. authors’ contributions la, cs, and ea were responsible for the conception and design of the study. ek, db, and jk were responsible for conducting participant sessions, collecting data, and conducting observations. la drafted the first version of the manuscript, with input from ek, db, and jk. cs and jr helped revise the protocol and edited the manuscript, and ea was responsible for revising the manuscript critically for important intellectual content. all authors read and approved the final manuscript. funding the study was funded through the michael garron hospital foundation. the funding bodies had no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript. availability of data and materials “not applicable” ethics approval and consent to participate ethics approval was received from the michael garron hospital research ethics board (reb ref - -mis- dated june , ), informed con- sent was obtained from all sdms, and assent was obtained prior to each study session from all participants. consent for publication “not applicable” competing interests the authors declare that they have no competing interests. author details faculty of health, school of health policy and management, york university, toronto, ontario, canada. openlab, university health network, toronto, ontario, canada. michael garron hospital, toronto, ontario, canada. received: march accepted: october references . evers w, tomic w, brouwers a. aggressive behaviour and burnout among staff of homes for the elderly. int j ment health nurs. ; ( ): – . . shinan-altman s, cohen m. nursing aides’ attitudes to elder abuse in nursing homes: the effect of work stressors and burnout. gerontologist. ; ( ): – . . boström am, squires je, mitchell a, sales ae, estabrooks ca. workplace aggression experienced by frontline staff in dementia care. j clin nurs. ; ( - ): – . https://doi.org/ . /j. - . . .x. . workers’ compensation board of british columbia. dementia: understanding risks and preventing violence. https://bccare.ca/wp-content/uploads/ 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and institutional affiliations. appel et al. pilot and feasibility studies ( ) : page of https://lumeen.com https://www.imedicalapps.com/ / /virtual-reality-therapy-combat-elderly-loneliness https://www.imedicalapps.com/ / /virtual-reality-therapy-combat-elderly-loneliness https://rendever.com https://www.express.co.uk/life-style/health/ /virtual-reality-dementia-patients-care-homes https://www.express.co.uk/life-style/health/ /virtual-reality-dementia-patients-care-homes https://doi.org/ . /brainsci https://doi.org/ . /brainsci https://doi.org/ . / . . https://doi.org/ . / . . https://www.ontario.ca/laws/statute/ h https://www.tehn.ca/sites/default/files/file-browser/sdm_brochure_mgh_final_feb_ .pdf https://www.tehn.ca/sites/default/files/file-browser/sdm_brochure_mgh_final_feb_ .pdf https://www.tehn.ca/sites/default/files/file-browser/sdm_brochure_mgh_final_feb_ .pdf http://vrology.com/vr-products/samsung-gear-vr-replacement-face-pad/ http://vrology.com/vr-products/samsung-gear-vr-replacement-face-pad/ https://www.oculus.com/legal/health-and-safety-warnings/ https://www.oculus.com/legal/health-and-safety-warnings/ https://www.prescribingvr.com https://loraappel.wixsite.com/vrct/about-rct 	abstract 	background 	objectives 	methods 	results 	conclusion 	key messages on feasibility 	background 	objectives 	research question 	methods 	design 	participants 	screening 	informed consent 	intervention 	data collection 	evaluation of study protocol feasibility (primary objective) 	evaluation of vr intervention /proof-of-concept (exploratory objective) 	results 	process 	screening 	capacity to provide consent 	informed consent 	vr sessions 	materials 	data collection tools 	equipment/devices 	resources 	discussion 	process 	screening 	consenting 	vr sessions 	materials 	data collection tools/instruments 	equipment/devices 	resources 	outstanding issues (identified and still needing resolutions) 	limitations 	conclusions 	supplementary information 	abbreviations 	acknowledgements 	authors’ contributions 	funding 	availability of data and materials 	ethics approval and consent to participate 	consent for publication 	competing interests 	author details 	references 	publisher’s note untitled joint plenary session wafmr, wsci, wap and wspr : am friday, january , default mode network activity: testing for association with externalizing behavior problems with and without callous unemotional traits bc walsh, m dalwani, j sakai. university of colorado school of medicine, northglenn, co . /jim-d- - . purpose of study adolescents with externalizing behavior problems (conduct disorder (cd) and substance use disor- ders (sud)) are a source of large social and economic costs. such adolescents sometimes display high levels of callous-unemotional (cu) traits and recent work supports that the presence of cu identifies a distinct subgroup of youths with cd. we sought to test whether activity of the default mode network (dmn), a functional brain network involved in self-reflective thought, empathy, and foresight, is associated with these disorders. methods used we collected minutes of resting state functional magnetic resonance imaging for patients with cd/sud and cu, patients with cd/sud without cu, and controls (all males – years). we used independent component analysis, a data-driven approach, to identify networks (i.e., clusters of voxels which activate together across time). we then utilized a standard template and spatial correlation to select the dmn. we tested: ( ) whether the groups differed significantly in dmn activ- ity, ( ) whether dmn activity was associated with severity of externalizing behavior problems within patients, and ( ) whether dmn activity was associated with cu trait sever- ity within patients. summary of results three-group comparisons revealed differences in one cluster including portions of the poster- ior cingulate cortex (pcc) and precuneus (brodmann area (ba) ). subsequent two-group comparisons showed that both patient groups had significantly less activation in this cluster compared with controls. our within-patient analysis showed that severity of externalizing behavior problems was negatively associated with activity of a cluster in the ventral and dorsal anterior cingulate areas (ba / ), and positively associated with activity in a cluster within the pcc. finally, within patients, severity of cu traits was negatively associated with activity in a cluster of the infer- ior parietal lobule (ba ). conclusions while both patient groups, regardless of cu, showed less activity in the dmn (ba ), higher levels of cu trait were associated with a distinct pattern of hypo-activity within patients. further investigation may lead to better treatment of these disorders. inflammatory prostaglandin e inhibits oligodendrocyte progenitor cell maturation: mechanism for neonatal white matter injury l shiow, d rowitch. ucsf, san francisco, ca . /jim-d- - . purpose of study white matter injury (wmi) in the extremely low birth weight (elbw) brain predicts develop- ment of cerebral palsy (cp) and other neurodevelopmental deficits. wmi, a disturbance in myelination, features matur- ation arrested oligodendrocyte progenitor cells (opcs). risk factors for wmi and cp include systemic inflamma- tion, but the mechanism linking systemic inflammation to opc maturation arrest is not understood. studies show that prolonged indomethacin exposure protects elbw infants from wmi. because indomethacin is an anti- inflammatory cox inhibitor, we hypothesized that inflam- matory prostaglandin e (pge ) - a major product of cox enzymes - can arrest opc maturation. methods used primary opcs were purified from mouse pups by immunopanning and differentiated in the presence of vehicle or pge . cells were stained for mature marker mbp and immature marker nk× . . cells were also col- lected for qpcr analysis of receptor expression. studies were also conducted with opcs purified from ep -receptor-deficient pups and littermate controls. summary of results pge caused a dose-dependent decrease in mbp staining of differentiating cells (figure ab). cells also had increased levels of nk× . (figure c), consistent with maturation blockade. opcs predominantly express the ep receptor (figure d), and j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ blockade was attenuated with opcs isolated from ep defi- cient mice (figure ef). conclusions pge - major product of cox enzymes - blocks in vitro opc maturation via the ep receptor. this data suggests that cox inhibitors may provide anti- inflammatory neuroprotection against wmi and cp by blocking pge effects on opcs. calcium release patterns in mouse atrial cardiomyocytes: role of transverse-axial tubules x yue, , r zhang, b kim, a ma, ji goldhaber, kd philipson . cedars sinai medical center, los angeles, ca; david geffen school of medicine, los angeles, ca; first affiliated hospital of xi’an jiaotong university, xi’an, china . /jim-d- - . purpose of study previous reports suggest that transverse- tubules (t-tubules) are reduced in density or absent in mouse atrial myocytes, similar to rat atrial myocytes. in rats the absence of t-tubules results in specific ca + release pat- terns upon depolarization, where triggered ca + release by junctional sarcoplasmic reticulum (sr) at the cell periphery propagates to the center. this results in a characteristic “u”-shaped ca + transient in confocal line-scan images of atrial myocytes loaded with fluorescent ca + indicators. the purpose of our study was to test whether mouse atrial cells have similar ca + release patterns. methods used we loaded enzymatically isolated mouse atrial myocytes with the membrane dye di- -anepps, as well as the ca + indicator fluo- am. we then recorded simultaneous membrane and ca + images using laser scan- ning confocal microscopy during field stimulation of the cells at hz. summary of results we examined di- -anepps signal in myocytes from mice, and found that % of myo- cytes possessed transverse and axial tubules (tats). left atrial cells had a higher percentage of tats ( %, / ) than right atrial cells ( %, / , p< . ). male mice had a higher percentage of tats ( %, / ) than female ( %, / , p< . ). out of double-labeled cells we investigated, only one cell, which completely lacked tats, showed “u” shaped ca + transients. the majority of cells, with varying degrees of tats, showed either near-synchronous “band”-shaped ca + transients (n= ) or “w”-shaped ca + transients (n= ). rapid ca + release either occurred just below the surface membrane or at tats, as marked by di- -anepps. conclusions we conclude that mouse atrial myocytes exhibit extensive tats. the presence of tats can markedly influence the pattern of ca + release upon depolarization, thereby affecting excitation-contraction coupling and likely contractility in atrial myocytes. a higher number of ca + release units at t-tubule/sr junctions may also increase the possibility of spontaneous ca + release and atrial arrhyth- mia, similar to humans, making the mouse model more relevant to human atrial disease than previously considered. identification of a novel innate immune signaling factor, tnk , that regulates viral infection t saito. university of southern california, los angeles, ca . /jim-d- - . purpose of study interferon (ifn) is the most critical cytokine in the suppression of viral infection. ifn exert its properties through the activation of jak-stat signaling cascade, which induces over interferon stimulated genes (isgs). isgs cooperatively restrict the infection by targeting different stages of the viral lifecycles. the degree of isgs induction serves as a determinant of the clinical outcome by either spontaneously resolving the infection or transitioning to persistent infection. therefore, the better understanding of how host cells regulate the ifn signaling will greatly improve our antiviral strategy. the aim of this study is to identify and characterize a novel host factor that modulate the ifn signaling with the ultimate goal to trans- late the insights into clinical applications. methods used we established a reporter cell line that stably expresses luciferase regulated by a representative isgs promoter. the reporter cells were used for a high throughput genome-wide cdna screening in order to iden- tify the novel host factor that governs the cellular sensitivity to ifn. in addition, we fully utilized in vitro and in vivo biochemical and genetic approaches for the characteriza- tion of the novel antiviral innate immune host factor. summary of results the cdna screening identified non- receptor tyrosine kinase (tnk ). the function of tnk has been largely unknown, except for its modest tumor suppressor phenotype. our study discovered that tnk is localize in the cytoplasm in resting condition. tnk trans- locates to the plasma membrane in response to ifn treat- ment, which promotes the tyrosine phosphorylation of tnk . the phosphorylated tnk participates in the ifn receptor signaling complex by binding to tyk and stat , wherein tnk plays a critical role in the serine phosphoryl- ation of stat at aa . our study found that this event governs the isgs expression in a gene specific manner. lastly, our in vitro and in vivo studies demonstrated that silencing or genetic deletion of tnk results in a severe abstract figure (a) representative images and quantification of (b) mbp+ or (c) nk× . + cells following exposure to pge . (d) expression of pge receptors in opcs. (e) images and (f) quantification of mbp+ cells from ep −/− and control mice exposed to pge . j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ deficit in isgs expression thereby enhancing viral replication. conclusions our study identified a novel antiviral host factor that governs isgs expression via serine phosphoryl- ation of stat . our results indicated that the modulation of tnk activity represents a potential therapeutic target for human pathogenic viral infectious diseases. adolescent medicine and general pediatrics ii concurrent session : pm friday, january , a week physical fitness program improves body composition among southwestern native american adolescents at risk for diabetes l colip, m chavez, p sandy, d ghahate, j bobelu, mr burge, v shah. unm hsc, albuquerque, nm . /jim-d- - . purpose of study obesity is increasing among native american children, putting this population at risk for the metabolic syndrome, type diabetes, and early cardiovas- cular disease. previous studies have shown that bmi is a poor estimator of body fat and obesity status in this popula- tion, but multi-frequency bioelectrical impedance analysis (bia) has been validated as a minimally invasive technique to analyze body composition according to total body fat, fat free mass, and body water percentages. this measure- ment accurately assesses different populations using population-specific means, as opposed to other methods, such as waist circumference or pediatric bmi assessment. we hypothesized that a week, after-school exercise and nutrition intervention would increase fat-free mass (ffm) and reduce total body fat (tbf) composition in this popu- lation as measured by pediatric bmi and bia. methods used native american adolescent subjects aged . ± . years were recruited to participate in a fitness program times a week for minutes of dietary instruction, aerobic exercise, and resistance training. parents attended an instructional session on healthy eating and the preparation of nutritional lunches for the children. body composition was assessed at baseline, weeks, and weeks with bia, as were waist circumference and pedi- atric bmi measurement. summary of results subjects completed all three visits; males and females. mean results from study weeks and are shown in the data table . conclusions a week, standardized fitness program that incorporates nutrition education showed significant improvements in body composition among southwestern native american adolescents as evidenced by reduced body weight, reduced pediatric bmi percentile, and increased fat free mass as determined by bia. reliability & validity of the chispa: a new brief assessment tool for adolescent substance use d rosero, m ramos, t condon, t warner. university of new mexico, albuquerque, nm . /jim-d- - . purpose of study adolescent substance use is a serious health concern in new mexico and the us. the nm department of health (nmdoh) school-based health centers (sbhcs) universally administer an evidence-based screening instrument, the crafft, for adolescent sub- stance use concerns. quality assurance efforts revealed the need for additional guidance for providers to briefly assess students after a positive screen. the chispa (cocaine, heroin, iv drugs, synthetic pot, pot, alcohol), was devel- oped to standardize assessments following positive crafft screens and provide initial guidance for sbhc providers. this study assesses the reliability and validity of the data obtained from the newly developed chispa. methods used the study was conducted in early with high school-aged sbhc users in albuquerque, nm using standard test-retest methods. we recruited parti- cipants to complete the crafft and chispa twice over weeks. using the chispa, students reported for the prior months: types of substances used; frequency of use, signs of addiction or acute danger; grades earned; and motiv- ation and past efforts to stop or reduce use. total scores for number of drugs used, crafft adverse events and chispa adverse events were computed. summary of results retest reliability for the crafft composite measure was . . chispa retest reliabilities were: . for alcohol use over the past months; . for having used any substances; . for number of sub- stances used; . for days per week substances used; . for student gpa; . for motivation to stop/reduce sub- stance use; and . for frequency of trying to stop/reduce use. composite scores from crafft were used as a valid- ity criterion. crafft scores correlated with total sub- stances used at . ; with days per week reported using substances at . ; with the total chispa adverse events at . . gpa, motivation and efforts to stop/reduce did not correlate with crafft scores. number of substances used correlated . with days per week using substances. chispa adverse events correlated at . with number of drugs used and . with days using substances. conclusions chispa measures show strong evidence of reliability and validity. sbhc providers may benefit from use of the chispa to help identify and address adolescent substance use concerns. abstract table study week weight (kg) height (cm) waist circ. (cm) bmi-% ile tbf (%) ffm (%) week . ± . . ± . . ± . . ± . . ± . . ± . week . ± . . ± . . ± . . ± . . ± . . ± . p-value < . < . . . < . < . j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ arthrogryposis: long-term quality of life analysis h nouraei, b sawatzky, j hall. university of british columbia, vancouver, bc, canada . /jim-d- - . purpose of study arthrogryposis multiplex congenita (amc) is where individuals are born with two or more joint contractures. amc is a wide spectrum that includes nearly specific disorders and causes movement restric- tion in the limbs, jaw, neck and spine. while much focus has been given to managing the child with amc, very little is currently known about the outcomes of adults living with amc. the primary purpose of this study was to describe the functional long-term outcomes in adults with amc. methods used recruited through international amc support groups, participants provided information on demographics, ambulation, surgery, treatments, quality of life (sf- ) and activity (physical activity scale for individuals with physical disabilites - pasipd) using an online questionnaire. summary of results individuals ( males and females) from over countries participated. the majority of the participants were from the us, eu, and canada respectively. mean age was years (range to ). % of the participants were living with a partner or on their own, and % walked independently at home. participants completed % more undergraduate degrees and % more advanced degrees compared to the general us population. despite their physical limitations and high level of chronic pain, the percentage of participants in full-time and part- time occupations matched those of the general us popula- tion. individuals living with amc had higher sf- scores than the general us population in all categories except vitality and physical function. the total pasipd (activity) score for the participants was at . compared to for those with other disabilities and for moderately active able-bodied individuals. conclusions people with amc are a unique disabled population who have managed to maintain a high degree of independence despite their physical limitations. post-secondary education has made them more competitive for careers that require little physical labor. they do remarkably well compared to the able-bodied population despite dealing with considerable musculoskeletal and other types of chronic pain. polymorphic ventricular tachycardia (pmvt) in an adolescent after use of synthetic cannabis: unmasked long qt syndrome bh hammond, ea greene. university of new mexico, albuquerque, nm . /jim-d- - . case report case report: a previously healthy year-old male with history of illicit drug use required defib- rillation by ems for polymorphic ventricular tachycardia. he had taken an unknown “synthetic drug” prior to the event. the patient was given naloxone by ems without clear response. his urine drug screen was positive for can- nabinoids but negative for amphetamines, barbiturates, benzodiazepines, cocaine, methadone and opiates. he had altered mental status, was intubated and sedated and admit- ted to the picu. electrolytes were normal. sedation included fentanyl, midazolam, and dexmedetomidine. after extubation, he experienced auditory and visual hallu- cinations and was combative. he was started on olanzapine and had resolution of his psychosis. daily ecg’s were done. he had initial borderline prolongation of the qtc interval, which significantly worsened with initiation of olanzapine and improved again after discontinuation. ecgs also demonstrated increased qrs amplitude and increased t wave height. a stress test was done after a -day washout of olanzapine showed normal baseline qtc but prolongation to msec with exercise, consistent with type i long qtc. he was started on nadolol. genetic testing was sent but did not reveal known lqt mutations. two weeks after discharge, a repeat ecg showed a normal qtc interval; repeat stress testing showed persistence of abnormal qtc prolongation to msec with exercise. discussion this patient presented after apparent exposure to synthetic cannabis, with a rhythm known to cause sudden death in patients with long qt syndrome (lqts). his initial ecg did not show obvious qt prolongation but subsequent exposure to qt prolonging medications raised that concern. his exercise test, done after those medications were allowed to wash-out, was abnormal with prolongation of his qtc in recovery to over msec with large, broad-based t waves typically seen with lqts type . conclusion synthetic cannabis can induce pmvt in patients with lqts. it is essential for patients with long qt syndrome to avoid use of these drugs. pilot study assessing correlation of ccl levels, biomarkers and modifiable behaviors in overweight/obese adolescents a dye, p pomo, m bodo, e yakes jimenez, , , r orlando, a kong , . university of new mexico school of medicine, albuquerque, nm; university of new mexico, albuquerque, nm; university of new mexico school of medicine, albuquerque, nm; university of new mexico school of medicine, albuquerque, nm; pacific institute for research and evaluation, albuquerque, nm . /jim-d- - . purpose of study obesity is associated with chronic, low- grade systemic inflammation which can lead to several car- diometabolic derangements. for this reason, identification of obesity-dependent inflammatory markers may provide a diagnostic or prognostic indicator of inflammatory status abstract figure j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ and enable staging of pathologic changes such as insulin resistance. we evaluated the relationship between an early inflammatory biomarker, chemokine (c-c motif) ligand (ccl ), and other clinical biomarkers and lifestyle beha- viors, in overweight/obese adolescents. methods used anthropometric measurements, biomarkers related to cardiometabolic risk, and three -hour dietary recalls were collected from vocational high school stu- dents ( % male), – years of age, with body mass index (bmi) ≥ kg/m . pearson’s or spearman’s correl- ation coefficients were used to examine relationships. summary of results mean bmi was . kg/m (range . – . ) and % had fasting glucose in the pre-diabetic range. mean ccl was . pg/ml (range – ) and it was positively correlated with triglycerides (r= . ; p= . ) and tnf-α (r= . ; p= . ) and marginally negatively correlated with fruit/vegetable intake (r=– . , p= . ) and omega- fatty acids (r=- . , p= . ). conclusions ccl was positively associated with pro-inflammatory biomarkers and negatively associated with some anti-inflammatory dietary factors in overweight/ obese adolescents. future intervention studies should inves- tigate whether higher intake of anti-inflammatory dietary factors could reduce ccl levels and potentially interrupt the inflammatory cascade in this adolescent population. capturing the substance use knowledge, attitudes and practices of new mexico’s school-based health center workforce m murphy, r sebastian, t condon, m ramos . university of new mexico, albuquerque, nm; university of new mexico, albuquerque, nm; university of new mexico, albuquerque, nm . /jim-d- - . purpose of study new mexico has a high prevalence of adolescent substance use. in , screening, brief intervention and referral to treatment (sbirt) was recom- mended by the american academy of pediatrics as a com- ponent of comprehensive care to address substance use among teenagers. in , the university of new mexico began sbirt training for providers at new mexico department of health (nmdoh)-funded school-based health centers (sbhcs) across the state. this study assesses baseline knowledge, attitudes and practices of the new mexico sbhc provider workforce regarding adolescent substance use and provision of services. methods used in early , the nmdoh administered an sbhc provider workforce survey (n= ) and achieved a . % response rate. this descriptive analysis includes all survey respondents that self-identified as primary care or behavioral health providers in an sbhc serving middle or high school students (n= ). summary of results among respondents, ( . %) were advanced practice nurses, ( . %) were masters level behavioral health providers, and ( . %) were other providers. most respondents, . %, agreed that risky substance use among students is common enough to warrant systematic screening and . % agreed that it is the responsibility of the sbhc provider to assess for stu- dents’ readiness to change. a majority reported self-efficacy in helping students achieve change in their alcohol use, illicit drug use, and prescription drug misuse: . %, . %, and . %, respectively. however, only . % of providers reported practicing the full sbirt model at their sbhc and . % reported familiarity with sbirt. among respondents, . % reported having received continuing education on sbirtwithin the previous three years. conclusions our results suggest that sbirt training for new mexico sbhc providers is timely. results also indi- cate a readiness of the sbhc provider workforce to receive training. this study is the first in a series of ongoing assess- ments and is part of a multi-year project that seeks to improve access to substance use screening and treatment for adolescents in new mexico. cardiovascular iii concurrent session : pm friday, january , the impact of seed variation on the measured accuracy of machine learning algorithms (auc) for several common model validation techniques in nuclear medicine vr singh, , p slomka , . cedars sinai medical center, los angeles, ca; university of california, los angeles, los angeles, ca . /jim-d- - . purpose of study the measured accuracy and precision of predictions obtained from machine learning models can be affected by the applied model validation technique, which assesses how the results of statistical analysis will generalize to an independent data set. variation of the seed (the separ- ation into training and testing sets) influences the measured auc (area under roc curve) that is used to compare pre- dictive models. the impact of seed variation was assessed on measured auc for a data set ( instances) used to predict the survival of patients who underwent nuclear medicine myocardial perfusion imaging tests. methods used these experiments, which examined the results from models built from different seeds, were done through interaction with the weka java api. validation was looped through times, and the seed was accordingly changed with each iteration. the range of the auc results was computed to find the maximum variation and a vassarstats auc comparison between two independ- ent roc curves was used to assess the statistical signifi- cance of the maximum observed variation. summary of results for the common logitboost algo- rithm, the maximum observed auc variations were . , . , and . for split sample, fold cv, and × fold cv respectively, and other common algo- rithms followed the same pattern of results. changing the seed when validating the model using split sample valid- ation significantly altered the measured auc (p< . ), and the x repeated fold cv proved to be the most precise, as statistically expected. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ conclusions seed selection was rendered as another inde- pendent variable when using split sample validation for this data set, capable of altering the statistical significance, which calls for extreme caution when interpreting the results in comparisons of predictive models. as branches of artificial intelligence, especially machine learning, are being incorporated more heavily in the medical field, it is import- ant that medical professionals around the world use the best validation techniques to draw the most accurate con- clusions/predictions from machine learning models, which is exactly what these experiments demonstrate. teenagers and adults living with congenital heart disease are being lost to follow up: evidence from tetralogy of fallot in a diverse patient population s behan, j andrews, s klewer. university of arizona, tucson, az . /jim-d- - . purpose of study due to improved surgical and medical management, there has been a rise in adults living with congenital heart diseases (achd) in recent decades. this increase in patients, along with a lack of achd cardiolo- gists, creates a gap in care that may result in achd patients being lost to follow up (ltf) and result in increased mor- bidity and mortality. to date, there is no population-based tracking system to monitor the growing population of achd patients and their follow-up status. using tetralogy of fallot (tof) as a marker for achd, the purpose of this study is to develop a comprehensive population-based sur- veillance system to collect health utilization, demographic, and disease outcomes information on individuals in southern arizona with tof who are age and over. methods used we analyzed tof cases from a population- based clinical dataset containing visit data from to present for individuals with congenital heart defects using -factor manova to assess the effect of insurance and residence on number of years ltf in patients over years. summary of results of confirmed diagnoses of tof in southern arizona, % live in urban regions, % are female, % are over , and % are confirmed deceased. both the main effect for location (urban, regional, rural) and the interaction effect between insurance (public, private) and location were significant. specifically, public insurance reduced ltf only in urban locations. mean lost to follow-up for urban private is years as compared to less than year for nonurban for all insurance types. conclusions populations particularly at risk are individuals in urban locations on private insurance who are more likely to: . suffer more serious disease and develop more signifi- cant co-morbidities . succumb to death earlier . end up paying more for treatment than they would have for routine surveillance. southern arizona is an excellent location for this type of surveillance study due to its ethnic and socioeconomic diversity. this model can therefore be used as a scale-up to a national surveillance study, so that we may better manage adults living with tof, and achds in general. α-myosin heavy chain in heart failure is reduced in a minor sub-population of rabbit myocytes expressing heterodimeric ΑΒ isoforms k jaradeh, j sharma, j avila, ks chavez, a wong, t wood, j southard, l mendoza, w ferrier, j bossuyt, k ginsburg, j lopez. uc davis, davis, ca . /jim-d- - . purpose of study in mouse models of heart failure, two distinctive sub-populations of ventricular myocytes (vmcs) exist: homodimeric αα or heterodimeric αβ isoforms of myosin heavy chain (myhc, lopez et al, circ. res., ). in failing rabbit hearts, α-myhc expression is reduced. however, the cellular distribution of myhc isoform expression is unknown. our objective is to identify co-existing vmc sub-populations and measure relative total (t)-myhc protein content in control (cntl) and heart failure (hf) rabbit hearts with single cell analysis. methods used non-ischemic hf in rabbits was induced with aortic valve insufficiency (volume overload) and abdominal aortic banding (pressure overload). cardiac single cells were isolated by anterograde coronary perfusion and enzymatic digestion from cntl and hf left ventricles (lv). vmcs median volumes were measured by coulter multisizer to determine hypertrophy (∼ k vmcs per lv). α, β, and t-myhc protein contents were measured by median fluorescence intensity (mfi) in isolated vmcs by flow cytometry. data is presented as mean+/−sd and ** represents a p< . . summary of results like mice, the median volume of hf rabbit vmcs increased by . fold compared to the cntl ( , +/– , mm from , +/– , mm , p< . , n= ). unlike mice, rabbits have vmc sub- populations based on myhc isoform expression patterns: αα, ββ, and αβ-vmcs. the αα-vmcs fraction was similarly low in both groups. in hf rabbits the fraction of αβ-vmcs was decreased with a reciprocal increase in the ββ-vmcs frac- tion (see table ). interestingly, the αβ heterodimeric vmc had a -fold higher t-myhc content per cell (mfi) when compared to the homodimeric ββ-vmcs (p< . , n= ). conclusions in this model of non-ischemic hf, α-myhc reduction is attributed to the disappearance of the minor sub- population of myocytes expressing the heterodimeric αβ iso- forms. this reduction of α-myhc content in hypertrophied cardiac myocytes is a potential novel mechanism for cardiac dysfunction. abstract table vmc sub-population αα cntl (n= ) < % heart failure (n= ) < % ββ % +/– % % +/– %** αβ % +/– % % +/– %** j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ reduced cardiomyocyte size does not account for reduced cardiac weight in growth restricted fetuses d kamna, ld brown, s jonker . oregon health and science university, portland, or; university of colorado school of medicine, aurora, co . /jim-d- - . purpose of study conflicting reports have been published regarding fetal cardiomyocyte growth responses to intra- uterine growth restriction (iugr). we sought to determine whether chronic placental insufficiency-induced iugr (pi-iugr) reduced size, maturation and cell cycle activity in fetal sheep cardiomyocytes. methods used pregnant ewes were exposed to days of elevated heat ( h at c, h at c daily) starting at ∼ % of gestation to produce pi-iugr (n= ) and were compared to controls (n= ). at ∼ % of gestation, fetal hearts were dissociated and cardiomyocytes from the left ventricle (lv), right ventricle (rv) and septum were assessed for size (length and diameter), maturation (fraction of cells binucleated), and cell cycle activity (ki- positiv- ity). summary of results compared to controls, pi-iugr fetuses were % smaller than controls, with hearts that were % smaller (p< . ). thus, heart weight relative to fetal weight did not differ between groups. lv and septal cardiomyocytes had similar dimensions between groups, but rv cardiomyocyte lengths were – % shorter than controls (p< . ). cardiomyocyte maturation and cell cycle activity were not different between groups at this stage of gestation. conclusions cardiomyocyte sizes were similar or only slightly reduced in pi-iugr fetuses, demonstrating sparing of cardiomyocyte enlargement in the pi-iugr fetus. however, heart weights were significantly reduced. therefore, we speculate that cardiomyocyte number was reduced by pi prior to % of gestation. tier : ecmo should not be tier for heart transplantation due to high mortality m luu, t aintablian, m hamilton, ja kobashigawa. cedars-sinai medical center, los angeles, ca . /jim-d- - . purpose of study pre-operative extracorporeal membrane oxygenation (ecmo) has been correlated to poor outcome post-transplant, while mcs devices have been shown to improve survival post-transplant. current proposals for future heart allocation policy list patients on ecmo as the highest priority for transplant (tier ), however, this is controversial due to the high mortality seen in this group. opponents of this proposal suggest using ventricular assist devices (vads) as a bridge to transplant rather than ecmo to transplant directly. therefore, we sought to compare transplant outcomes between the two groups. methods used between and we evaluated patients who had ecmo prior to heart transplantation. of these patients were bridged with vad to transplanta- tions, and were transplanted directly from ecmo. endpoints for both groups included -year actuarial sur- vival, freedom from cardiac allograft vasculopathy (cav) ≥ % by angiography, freedom from non-fatal major adverse cardiac events (nf-mace: myocardial infarction, new congestive heart failure, percutaneous coronary inter- vention, implantable cardioverter defibrillator/pacemaker implant, stroke), and freedom from any treated rejection. summary of results there was a trend for decreased -year survival in the ecmo vs. ecmo to vad groups. -year freedom from cav, freedom from nf-mace, and freedom from any treated rejection in pre-transplant ecmo patients bridged from vad to transplant were not significantly different compared to patients transplanted from ecmo directly. conclusions while there was no significance between both groups, there appears to be a trend towards greater -year mortality in those patients transplanted directly from ecmo. these finding have implications for future discus- sions regarding tiers for heart allocation policy. further investigation into this question is warranted. outcome of hypertensive heart transplant patients r sharoff, t aintablian, g rodriguez, m hamilton, ja kobashigawa. cedars-sinai medical center, los angeles, ca . /jim-d- - . purpose of study systemic hypertension (htn) is a known risk factor for cardiovascular disease. it has been found to be prevalent in % patients post heart trans- plantation mostly due to side effects of calcineurin inhibi- tor medications and previous history of essential hypertension. hypertension post-transplant can be very dif- ficult to control, particularly diastolic htn. it is not known whether the severity of htn characterized by the number of anti-hypertensive medications results in poor outcome. methods used between and , we assessed heart transplant patients. we divided patients into four groups: group a= anti-htn medications, group b= anti-htn medication, group c= anti-htn medications, and group d= or more anti-htn medications. it is assumed that blood pressure control was attained with the stated number of blood pressure medications. three year abstract table endpoints ecmo to vad to oht (n= ) ecmo to oht (n= ) log rank p-value -year actuarial survival . % . % . -year actuarial freedom from cav . % . % . -year actuarial from nf-mace . % . % . -year actuarial freedom from any treated rejection . % . % . p=ns. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ outcome for these groups included survival, non-fatal major adverse cardiac events (nf-mace: myocardial infarction, new congestive heart failure, percutaneous cor- onary intervention, implantable cardioverter defibrillator/ pacemaker implant, stroke), cardiac allograft vasculopathy (cav) ≥ % by coronary angiography, first year cellular, antibody mediated, and any treated episodes of rejection. summary of results there was no statistical difference in -year survival, freedom from cav, freedom from nf-mace, or -year freedom from any treated rejection between all four groups. there appears to be a trend for more hypertrophy for more anti-htn medications required. conclusions severity of htn after heart transplantation does not appear to affect outcome assuming blood pressure control is attained. left ventricular hypertrophy appears to be concordant with a need for more anti-htn medications. trans-catheter closure of patent ductus arteriosus in severely premature neonates: is post-ligation syndrome an issue? d peck, r garg, a phillips, m mcrae, p nevin, k basacker, c simmons, e zahn . ucla, los angeles, ca; cedars-sinai, los angeles, ca . /jim-d- - . purpose of study patent ductus arteriosus (pda) is the most common cardiovascular abnormality in the preterm newborn. surgical ligation has been associated with signifi- cant morbidity including hemodynamic instability and car- diorespiratory compromise known collectively as “post-ligation syndrome” (pls). we have developed a new method of trans-catheter pda closure (tc-pda-c) applic- able to this patient population. this study sought to deter- mine if trans-catheter pda closure results in pls. methods used this is a retrospective review of all prema- ture newborns treated with tc-pda-c at our institution between / – / . pls was defined as diminished left ventricular myocardial performance and/or significant alter- ation in cardiorespiratory stability and/or increased need for vasopressor support. myocardial performance was assessed via transthoracic echocardiogram (left ventricular fractional shortening (sf), ejection fraction (ef)) prior to intervention, within hrs of intervention, and prior to discharge. clinical indices of cardiorespiratory stability (heart rate (hr), blood pressure (bp), systemic oxygen sat- uration) and the need for increased vasopressor and/or respiratory support were reviewed before, , , , , and hrs following intervention. summary of results tc-pda-c was successfully per- formed in / (median weight/ age/ corrected gestational age= gm/ days/ wks). following pda closure myocardial performance decreased but remained in the normal range (ef/fs: pre= %/ %, post = %/ %, discharge= %/ %). no significant changes were noted in arterial systolic, diastolic or mean bp, hr, systemic oxygen saturation, or vasopressor or respiratory support. conclusions transcatheter pda closure in preterm infants is associated with a decline in myocardial performance which remained in the normal range and did not appear to be associated with any negative clinical sequelae. these findings suggest that pls, while present using this new technique, may be less severe with catheter based pda closure than with traditional surgical ligation in preterm newborns. further study and longer follow-up is needed. abstract table endpoints group a no anti-htn medication (n= ) group b anti-htn medication (n= ) group c anti-htn medications (n= ) group d ≥ anti-htn medications (n= ) p-value -year actuarial survival . % . % . % . % . -year actuarial freedom from cav . % . % . % . % . -year actuarial freedom from nf-mace . % . % . % . % . -year actual freedom from any treated rejection . % . % . % . % . -year actual freedom from antibody mediated rejection . % . % . % . % . -year actual freedom from acute cellular rejection . % . % . % . % . -year actual freedom from biopsy negative rejection . % . % . % . % . interventricular septal thickness (ivs) > . cm . % ( / ) . % ( / ) . % ( / ) . % ( / ) p=ns left ventricular posterior wall (lvpw) > . cm . % ( / ) . % ( / ) . % ( / ) . % ( / ) p=ns p=ns. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ endocrinology and metabolism ii concurrent session : pm friday, january , effect of obesity and ckd on insulin sensitivity indices i ahmad, l zelnick, ih deboer . university of washington, seattle, wa; university of washington, seattle, wa . /jim-d- - . purpose of study the gold standard of measuring insulin sensitivity is the hyperinsulinemic-euglycemic clamp, but due to its complexity, surrogate indices have been formu- lated to assess insulin sensitivity. performance of estimates across kidney function and adiposity may differ depending on the individual insulin response of different tissues. methods used in a cross-sectional study of subjects with nondiabetic ckd (estimated gfr < ml/min/ . m ) and healthy controls, we quantified insulin sen- sitivity using hyperinsulinemic-euglycemic clamp (siclamp), oral glucose tolerance tests (matsuda index), and fasting glucose and insulin (homa-ir). we compared the matsuda index and /homa-ir to siclamp using descriptive statistics, graphical analyses, correlation coefficients, and linear regression. multivariable modelling was done adjusting for age, sex, and race/ethnicity. summary of results correlations of siclamp with matsuda (r= . ) and /homa-ir (r= . ) for patients with ckd were lower than those without ckd (matsuda, r= . ; / homa-ir, r= . ) but did not differ substantially for par- ticipants with obesity (matsuda, r= . ; /homa-ir, r= . ) compared to those who were not (matsuda, r= . ; /homa-ir, r= . ). compared with nonobese participants, those with obesity had a mean matsuda index that was . lower ( % ci − . - − . , p< . ) and a mean /homa-ir that was . lower ( % ci − . - − . , p< . ) at the same level of siclamp, adjusting for age, sex, and race. similarly, com- pared to healthy controls, participants with ckd had a mean matsuda index that was . lower ( % ci − . – . , p= . ) and a mean /homa-ir that was . lower (ci − . – . , p= . ). correlation coefficients of bmi to siclamp, matsuda, and homa-ir were – . , – . , and . , which suggests that matsuda and homa-ir may be more influenced by adiposity than siclamp. conclusions obesity and ckd alter the relationship of matsuda index and homa-ir with siclamp; obesity biases the correlation and ckd introduces less precision. insulin sensitivity indices should be used cautiously in patients who are obese or with chronic kidney disease. estimates of insulin sensitivity derived from fasting measurements or the ogtt may be more strongly affected by adiposity. diabetic ketoacidosis in type vs. type diabetes jm miles, a accurso, j isautier, ae marquez, g wilson, k herrmann, y kudva. mayo clinic, rochester, mn . /jim-d- - . purpose of study diabetic ketoacidosis (dka) is known to occur in type diabetes (t dm), but has not been well characterized in this condition. in the present study, we compared the clinical and biochemical features of dka in t dm with those in type diabetes (t dm). we also determined the effect of a dka treatment protocol (instituted in ) on insulin infusion (insinf) rate and duration, and on icu and hospital length of stay (los). finally, we characterized the role of subspecialty endocrinology consultation in the man- agement of dka. methods used diabetes and an admission β-hydroxybutyrate (βohb) ≥ . mmol/l were required for inclusion. records on patients over . years were analyzed. summary of results individuals with t dm (n= ) were older ( ± v ± y, p< . ) with higher bmis ( ± v ± kg/m , p< . ), slightly higher admission glucose ( ± v ± mg/dl, p= . ), lower βohb ( . ± . v . ± . mmol/l, p < . ), longer icu los ( ± v ± h, p< . ) and hospital los ( ± v ± h, p< . ), and slightly less documented hypogly- cemia during the hospitalization ( . ± . v . ± . epi- sodes, p= . ) compared with t dm patients (n= ). duration of insinf was longer in t dm v t dm ( ± v ± h, p< . ), but there were no differences in insinf rate ( . ± . v . ± . u/kg/h, p=ns). patients treated by protocol (n= ) had higher insinf rates ( . ± . v . ± . u/kg/h, p= . ) and bor- derline shorter duration of insinf ( ± v ± h, p= . ) but no difference in icu los ( ± v ± h, p= . ) or hospital los ( ± v ± h, p=ns) compared to patients treated prior to initiation of the protocol (n= ). a minority ( %, n= ) of patients were seen by an endocrinologist; these individuals had higher βohb ( . ± . v . ± . mmol/l, p= . ), longer duration insinf ( ± v ± h, p< . ), and longer icu los ( ± v ± h, p< . ) and hospital los ( ± v ± h, p= . ). although βohb was similar in women and men ( . ± . v . ± . mmol/l, p=ns), women had lower serum bicarbonate ( ± . v ± . meq/l, p= . ). conclusions in summary, dka in t dm is milder than in t dm but is associated with longer icu and hospital stay. a dka protocol resulted in higher insinf rate and shorter duration, but did not affect los. the endocrinolo- gist appears to play a relatively minor role in dka management. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ exercise intervention improves the metabolic profile of southwestern native american adolescents l colip, m chavez, p sandy, d ghahate, j bobelu, v shah, mr burge. unm hsc, albuquerque, nm . /jim-d- - . purpose of study obesity is highly prevalent among native american youth, with prevalence as high as % in boys and % in girls. obesity is a major risk factor for the development of metabolic syndrome, type diabetes, and early cardiovascular disease. the goal of this study was to evaluate the impact of early lifestyle interventions which promote healthy eating and exercise on obesity-related risk factors among native american children. we hypothesize that a lifestyle intervention that incorporates a tri-weekly exercise program and nutritional counseling will result in improvements in the metabolic profile and body compos- ition characteristics of this population. methods used sixty-six adolescent native american sub- jects with mean age . ± . years were recruited to par- ticipate in an exercise program times a week for minutes of dietary instruction, aerobic exercise and resist- ance training. parents attended an instructional session on healthy eating and preparing nutritional lunches for their children. subjects were assessed at baseline, weeks and weeks for fitness outcomes using standardized testing criteria for children. patients also had bloodwork drawn for standard metabolic parameters, and body composition was determined using bioelectrical-impedance. summary of results thirty-two subjects completed all three visits: males and females. subjects showed sig- nificant improvements in their lipid profile, a c, and fat free mass (ffm). summary results are shown in the data table . conclusions a standardized fitness program among native american children was effective at reducing a c, fasting blood sugar, fasting lipids, and improving body compos- ition over the course of months. can the dawn phenomenon be predicted in order to program an insulin pump? l ereifej, m bouchonville, e duran-valdez, d schade. university of new mexico, albuquerque, nm . /jim-d- - . purpose of study the dawn phenomenon is the primary cause of hyperglycemia prior to breakfast. diabetic patients on an insulin pump (csii) often program an increase in insulin delivery prior to breakfast to suppress morning hyperglycemia. no studies have evaluated the benefits and risks of this approach. since the dawn phenomenon occurs sporadically, our study evaluated whether the frequency of the dawn phenomenon can be predicted to occur in order to program csii effectively. methods used we studied type diabetes volunteers on multiple nights (total number ) in order to quanti- tate and characterize the dawn phenomenon using continuous glucose monitoring for a maximum of five continuous days per individual. we examined the relation- ship between the occurrence of the dawn phenomenon, multiple demographic features, and cgm glucose para- meters as shown in the table below. regression analysis was used for continuous variables whereas an analysis of vari- ance was used for categorical variables. significance was set at p< . . summary of results as documented in the table below, there were no parameters that would readily predict the occurrence of the dawn phenomenon. the dawn phenom- enon occurred sporadically and unpredictably (median rate of % of the nights). conclusions our study demonstrates that the dawn phenomenon occurrence is unpredictable. therefore, pro- gramming a csii pump to deliver early morning insulin to counteract the hyperglycemia of the dawn phenomenon is not effective and potentially dangerous due to increased risk of hypoglycemia. we conclude that alternative strat- egies should be used to suppress early morning hypergly- cemia in type diabetes. relationship between glycemic variability and Β-cell function in adults at high risk of type diabetes ma szkudlinska, ml neuhouser, km utzschneider . university of washington, seattle, wa; fred hutchinson cancer research center, seattle, wa; va puget sound, seattle, wa . /jim-d- - . purpose of study β-cell dysfunction is a key feature the pathogenesis of type diabetes. it has been hypothesized abstract table study week ldl chol (mg/dl) hdl chol (mg/dl) tg(mg/ dl) bmi-% ile ffm (%) a c (%) week ± ± ± ± . ± . . ± . week ± ± ± ± . ± . . ± . p-value < . < . < . < . < . < . abstract table statistical data a c glycomark age diabetes duration bmi mean h glucose mean glucose excursion gender slope . – . . . – . . . na r-squared . . . . . . . na p value . . . . . . . . j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ that frequent glucose fluctuations, referred to as “glycemic variability,” may induce oxidative stress and thereby con- tribute to poor β-cell function. previous studies have shown that β-cell function is improved following a low glycemic index (lgi) diet, but whether this is due to a decrease in glycemic variability or mediated by changes in oxidative stress is unknown. methods used subjects with pre-diabetes based on a screening oral glucose tolerance test (ogtt), consumed a weight stabilizing, moderate glycemic index (mgi) diet (gi: – ) for weeks after which they underwent an insulin modified intravenous glucose tolerance test (ivgtt) and -days of continuous glucose monitoring (cgm). the acute insulin response to glucose adjusted for insulin sensitivity (disposition index; di) from the ivgtt provided an assessment of β-cell function. the standard deviation (sd) of glucose levels by cgm provided a measure of glycemic variability. fasting erythrocyte gluta- thione (gsh) and glutathione disulfide (gssg) and thio- barbituric acid reactive substances (tbars) were measured to assess oxidative stress. after completing the mgi diet, a subset of subjects (n = ) was placed on weeks of a lgi diet (gi: < ) and procedures repeated. summary of results subjects ( m/ f; age . ± . y; bmi . ± . kg/m ) were enrolled. six had isolated impaired fasting glucose, isolated impaired glucose toler- ance, and both on screening ogtt. di trended towards a negative correlation with cgm sd (r=– . , p= . ). -hr glucose from the screening ogtt was positively cor- related with cgm sd (r= . , p= . ), but fasting glucose was not (r= . , p= . ). there were no signifi- cant correlations between cgm sd and any of the oxida- tive stress markers (gsh/gssg ratio: r=– . , p= . ; tbars: r= . , p= . ). the lgi diet decreased gly- cemic variability (Δsd cgm: – . , p= . ), but did not change β-cell function (Δdi: , p= . ). conclusions these data suggest that glycemic variability does not induce β-cell dysfunction via oxidative stress in subjects with pre-diabetes. mixed macronutrient meals normalize glucose and insulin levels in impaired glucose tolerant obese teenage girls aa lynch, , g coe, k nadeau, m cree-green . medical college of wisconsin, wauwatosa, wi; children’s hospital colorado, aurora, co . /jim-d- - . purpose of study obese adolescent girls with impaired glucose tolerance (igt) are at risk for developing type diabetes. the degree of postprandial hyperglycemia may be impacted by consumption of liquid carbohydrates, which leads to rapid increases in both serum glucose and insulin concentrations. it is unclear if the addition of protein and fat to a drink mitigates these responses. thus, the goals of this study were: ). to compare the metabolic responses to two types of drinks ). to compare metabolic responses in igt vs. ngt obese girls. methods used seven overweight (bmi> th %ile) post- menarchal adolescent females ( – years old) had a hour monitored overnight fast followed by an oral glucose tolerance test with consumption of g of glucola. a carbohydrate/protein/fat shake ( . g. carbohydrates, . g. protein, g. fat) was consumed hours after the glucola, with blood samples drawn hourly for hours after each drink. blood glucose, serum insulin and free fatty acid concentrations were measured at each time point. the area under the curve for each response was calculated. responses to glucola vs. shake for the entire group were compared with a students tailed t-test, and responses in igt vs. ngt subjects were also compared. summary of results as predicted, both glucose and insulin concentrations trended higher with glucola com- pared to mixed macronutrient shake (p-value . , . respectively), despite glucola’s lower carbohydrate content. glucose trended higher (p= . ) for igt vs. ngt girls with glucola consumption. igt girls’ glucose and insulin were comparable to ngt girls (p= . , . , respectively) with shake consumption, suggesting that addition of protein/fat normalizes postprandial hyperglycemia in igt girls. conclusions we found that adding protein/fat to carbohy- drate drinks mitigates the peak glucose response in obese teenage girls. further, postprandial glucose concentrations normalized for igt girls with the addition of protein/fat, suggesting obese teenage girls could experience metabolic benefit from mixed macronutrient meals and avoidance of simple carbohydrate drinks. gastroenterology concurrent session : pm friday, january , the prevalence of colon adenomatous polyps in asian indians s mann, j wilson-chiru, s tejaswi. university of california, davis medical center, sacramento, ca . /jim-d- - . purpose of study most colon cancers develop via the adenoma-carcinoma sequence. this is the basis of colon cancer screening through colonoscopy with polypectomy. the national cancer institute advocates for individualized screening strategies but further understanding of individual risk factors including ethnicity is needed. we reviewed the california cancer registry for recent colorectal cancer rates and found a markedly lower incidence in south asians compared to caucasians. based on this, we hypothe- sized that the prevalence of colon adenomatous polyps in asian indians would be lower than caucasians. methods used on retrospective chart review of average-risk screening colonoscopies at our institution between sept and oct , and using patient- reported ethnicity data, we identified asian indian cases. we identified caucasian controls after matching for endoscopist, date, and location of the procedure. variables including presence, number, location (right vs left colon), size, and histology of colon polyps were recordered. patient variables known to influence adenoma prevalence: age, sex, bmi, diabetes, smoking status, alcohol j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ consumption, were also documented. summary of results smokers were more likely to have adenomatous polyps (p= . ). after controlling for smoking using logistic regression analysis, asian indian eth- nicity was not found to be a significant predictor of the presence of adenomatous polyps (p= . ). there was a higher proportion of tubular adenomas > cm in size, and sessile serrated adenomas in the caucasian group, however this did not reach statistical significance. conclusions contrary to the lower incidence of colorectal cancer in asian indians, the prevalence of precursor aden- omatous polyps was higher than that of caucasians. in add- ition, a majority ( %) of the adenomas were located in the proximal colon. however, there were no villous or sessile serrated colon adenomas among asian indians. this may imply that colon adenomas in asian indians have a more benign nature. this could be due to genetic, lifestyle, and dietary factors. this is promising for further research to identify protective factors to decrease the burden of colorectal cancer. larger prospective studies are required not only to confirm/refute our findings, but also identify the most appropriate colon cancer screening strategy among asian indians. role of the lymphatic system in the progression of inflammatory bowel disease to colorectal cancer in an experimental mouse model s daley, j washington, m bernas, e meister, j thorn, p kiela, n tanoue, js alexander, m witte . university of arizona, tucson, az; louisiana state university, shreveport, la . /jim-d- - . purpose of study inflammatory bowel disease (ibd) is characterized by chronic inflammation. longstanding inflammation in this setting can progress to colorectal cancer (crc) (∼ – % lifetime risk in ulcerative colitis [uc]). many factors are involved in this process, however, the role of the lymphatic system has not been fully investi- gated. this project uses lymphatic deficient mice (angiopoietin knockout [ang ko]) to examine the lymphatic system in ibd to crc progression. angiopoietins are growth factors involved in blood and lymphatic vessel remodeling and maturation as well as in cancer development. previously we found ang ko mice had decreased inflammation, injury progression, and blood and lymphatic vessel remodeling in an acute model of uc. this chronic model examines whether lymphatic vascular insufficiency in the colon can protect against the progres- sion of ibd to crc and metastasis. methods used c b mice (ang +/+, +/−, −/−) were divided into groups. group : mg/kg ip injection of azoxymethane (aom) procarcinogen+ . % dextran sodium sulfate (dss) administered in drinking water. dss was administered in on-off cycles ( days on, days off). controls included group : aom alone; group : dss alone; group : untreated. clinical severity (weight, energy, stool consistency, occult blood) was measured weekly. at sacrifice, blood was collected for biomarker/ cytokine (ang , il -b, il , tnf, vegf-c) elisa analysis, colon length measured, tumor burden, and histology assessed. summary of results ko mice exhibited reduced survival ( %) vs +/+ ( %) and +/− ( %). most mice devel- oped tumors and crc incidence did not differ among gen- otypes (+/+= %; +/−= %; −/−= %). tumor area was significantly increased in kos ( . %) vs +/− ( . %) and +/+ ( . %). ang serum concentrations were signifi- cantly different between genotypes (+/+= ; +/−= ; −/−= ) but were unaffected by treatment as were other serum biomarkers. conclusions lymphatic deficiency, defective lymphangio- genesis, and impaired lymphatic-generated inflammation do not protect against clinical uc severity or progression to crc in this experimental uc model. it is undetermined whether crc metastasis might be inhibited. a remembrance of procedures past: late hepatic artery thrombosis r andrews, e sheehan, m lacy. university of new mexico, albuquerque, nm . /jim-d- - . case report hepatic artery thrombosis (hat) is a compli- cation following liver transplantation.. generally there are two subsets of hat: early hat, which occurs within days of transplant and late hat, which occurs after days. the following is a case of late hat with concur- rent hepatic necrosis which is unique due to the year time period between olt and onset of late hat. a -year-old male with a history of cirrhosis with olt years prior presented to the ed with days of worsen- ing abdominal pain and markedly elevated lft’s. a con- trasted ct abdomen/pelvis revealed complete occlusion of the hepatic likely secondary to hepatic artery thrombosis. over the next few days his lfts trended down and the expectation was that his hepatic necrosis would recover; so he was discharged without antcoagulation. the patient was soon readmitted and a ct abdomen/pelvis demonstrated unchanged hat and hepatic necrosis with new left portal vein thrombosis. a thrombophilia workup revealed a posi- tive lupus like inhibitor (lli). the patient had a compli- cated hospital course and ultimately passed away from infectious causes. our patient developed late hat years after olt, which is very rare. a review of the literature revealed one other case report of hat years post olt. it is unknown whether his thrombotic complications were a result of complications of olt or the lli or a combin- ation. late hat is a serious vascular complication of olt and can occur many years following the transplant and carries significant morbidity and mortality if not addressed promptly. references . yang yz, zhao jc, yan ln, et al. risk factors associated with early and late hat after adult liver transplantation. world journal of gastroenterology ; : – . . stange bj, glanemann m, nuessler nc, et al. hepatic artery thrombosis after adult liver transplantation. liver transplantation ; : – . j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ . haque m, shumacher pa, harris a, et al. late acute celiac and hepatic artery thrombosis with portal vein thrombosis resulting in hepatic infarction years post orthotopic liver transplantation. ann hepatol ; : – . . feltracco p, barbieri s, cillo u, et al. perioperative thrombotic complications in liver transplantation. world journal of gastroenterology ; : – . post- infectious ibs following recurrent/ relapsing c. difficile associated diarrhea (cdad) r andrews, m gavin . university of new mexico, albuquerque, nm; university of new mexico, albuquerque, nm . /jim-d- - . case report post infectious irritable bowel syndrome (pi-ibs) is defined as the acute onset of symptoms of irritable bowel syndrome(ibs) in a person who recently had an episode of infectious gastroenteritis and without a previous diagnosis of ibs. this disease process has been described following episodes of infectious gastroenteritis from either viral, bacterial, or parasitic causes. many studies have demonstrated a strong association between cases of bacterial gastroenteritis caused by campylobacter, salmonella, and shigella, and the devel- opment of pi-ibs. there remains a lack of consensus as to whether or not pi-ibs can occur following clostridium difficile (c. difficile) infection. in view of this fact, we describe two patients who developed diarrhea-predominant ibs following recurrent/ relapsing c. difficile infection. both cases were seen in a clinic that screens patients for possible fecal microbiota transplant (fmt) for the treatment of recurrent/relaps- ing c. difficile-associated diarrhea. the first case involves a middle aged female with recurrent cdad for which she was ultimately treated successfully with fmt via colonoscopy. in the following months, she developed symptoms consistent with ibs, the symptoms of which had not been present prior to her c difficile infection. a lactulose breath test was con- sistent with a diagnosis of small intestinal bacterial over- growth (sibo). a second case involved a young adult male who was seen in clinic following cdad. the c. difficile infection resolved following a pulsed course of vancomycin. however, the patient developed symp- toms consistent with diarrhea-predominant ibs and was diagnosed with sibo. these cases support the possible association between recurrent/relapsing cdad and pi-ibs. references . spiller r. garsed k. post infectious irritable bowel syndrome. gastroenterology may; : – . . marshall jk, et al. incidence and epidemiology of irritable bowel syndromeafter a large waterborne outbreak of bacterial dysentery. gastroenterology ; : . . piche t, et al. low risk of irritable bowel syndrome following clostridium difficile infection. can j gastroenterol ; : – . comparison of transcutaneous respiratory monitoring with conventional vital signs in the detection of abnormal respiratory events in children undergoing endoscopy g lui. loma linda university, loma linda, ca . /jim-d- - . purpose of study accurate and reliable respiratory moni- toring is essential for early detection of respiratory distress during procedure related sedation. while preliminary inves- tigations vouched for the utility of transcutaneous respira- tory monitoring (tcm) for adult endoscopies and post-anesthesia care unit, it has not been evaluated in pedi- atric endoscopies. accordingly, this study hypothesized that tcm would more accurately detect altered respiratory status when compared to gold standard monitoring methods. methods used this prospective cross-sectional observa- tional study enrolled forty-two pediatric patients, who underwent colonoscopies and esophagogastroduodenos- copies. the primary aim of this study was to compare the number of altered respiratory events such as apnea, cyan- osis, choking, agitation, moaning or snoring, which were detected by pulse-oximetry, micro-stream capnography (mcap), and tcm. the secondary aim was to evaluate factors associated with developing altered respiratory events (are). summary of results results from this study suggest that the rate of detecting ares by mcap was more than two-fold greater, when compared in real-world conditions to tcm and other modalities including pulse-oximetry and rr by plethysmography. in this study tcm waveform was the first to change in % of the altered respiratory events. using mcap, the waveform changed first in . % of the ares. secondly, an increased rate of developing ares was associated with smaller size with respect to patients’ weight, requirement of higher drug amounts, and an upper endoscopy procedure. conclusions adding tcm to a patient monitoring bundle that already includes mcap adds little benefit to monitor- ing pediatric patients undergoing endoscopy. although tcm detected ares such as apnea with high specificity, it was unable to provide the early detection of ares that mcap provides. abstract table are detection performance by tcm, mcap, respiratory rate and pulse-oximetry total are mean are per minute detected by each modality tcm . /minute capnography . /minute respiratory rate . /minute pulse-oximetry . /minute j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ genetics concurrent session : pm friday, january , utility of broad sequencing to reveal mtm gene mutation carriers with history of recurrent neonatal death vk berger, a alsadah, j shieh. university of california san francisco, san francisco, ca . /jim-d- - . purpose of study to report the utility of exome sequen- cing in evaluating recurrent neonatal death in a family. in many cases of history of neonatal loss, testing of affected neonates is not possible, however the availability of broad sequencing allows for directed application for family members in such situations. we present a family with history of recurrent male losses due to severe respiratory distress. the patient experienced loss of two term male infants. the first neonatal loss was due to severe respiratory distress while the subsequent pregnancy was also compli- cated by polyhydramnios and severe refractory respiratory distress at birth. a maternal relative also suffered three male neonatal losses from respiratory distress. methods used clinical whole exome sequencing was per- formed. demised infant tissue was not available for testing, and sequencing of the patient via trio exome was accom- plished with modifications of this application. exome ana- lysis was performed by filtering variants by minor allele frequency and by inheritance pattern. inherited variants were further considered by comparison with mutation data- bases and using detailed phenotypic annotation. summary of results sequencing revealed a missense variant in the mtm gene associated with x-linked myo- tubular myopathy, inherited maternally. the mtm c. c>t (p.pro leu) mutation resides in exon , which contains the rac-induced recruitment domain (rid) of myotubularin, a key muscle differentiation protein. many previously documented pathogenic variants cluster in exon , and the rid domain is highly conserved region, signifying this is an important component of the protein and pathogenic changes lead to myotubular myopathy. functionally, mutation in the rid region has been shown to lead to severe manifestations, as seen in the affected chil- dren of our patient and support the significance of this mutation. conclusions exome sequencing can be applied to evaluate unexplained neonatal deaths in affected families. such sequencing can be effective in patients even when genetic testing is not available on affected individuals. in this case, sequencing could only be done on asymptomatic patients with a family history. this report emphasizes the importance of well-defined phenotyping and narrowing genomic space in evaluation. efficacy and safety of diazoxide choline controlled release tablet in prader-willi syndrome: results of the double-blind arm of the study a surampalli, m wencel, j gold, , n cowen, v kimonis . university of california irvine, irvine, ca; loma linda university school of medicine, loma linda, ca; essentialis inc., carlsbad, ca . /jim-d- - . purpose of study prader-willi syndrome (pws) is a complex, multisystem genetic disorder characterized by multiple endocrine, neurological and behavioral abnormal- ities. to date, no medication has proven effective in regulat- ing appetite in pws. it is conceivable that diazoxide choline controlled-release tablet can be used to control appetite and possibly improve on behavioral symptoms in pws, through the activation of a diverse set of downstream mediators. methods used thirteen obese pws subjects between – yrs were enrolled in the study. two subjects were with- drawn from the study due to a prior psychiatric illness in one and progressively compromised glycemic control at the highest dose in the other. eleven subjects completed the open-label treatment phase, were designated as responders (hyperphagia response rate %) and randomized into the double-blind phase of the study. data was analyzed for both open-label treatment and double-blind phase. summary of results we found significant improvements in hyperphagia in dccr treated subjects at the end of the open-label treatment period (– . %, p= . ) and in those who continued on dccr in the double blind phase (– . %, p= . ). there was significant reduction in ‘aggressive’, ‘threatening’, ‘destructive’ behavior in com- parison to all other pws associated behaviors at the end of open label treatment phase ( . % vs . % respectively, p= . ). the effect of dccr on behavior seems to be independent of the effect on hyperphagia. significant impacts were seen on fat mass (– . %, p= . ), lean body mass (+ . %, p= . ), lean body mass/fat mass ratio (+ . %, p= . ) during open-label treatment. the impacts on body composition were of similar magnitude in gh treated and gh naïve subjects. dccr treatment sig- nificantly reduced tg, tot-c, and non-hdl-c in both the open-label and double blind phase. conclusions dccr significantly reduces hyperphagia, fat mass (while increasing lean body mass), aggressive, threa- tening, destructive behavior and improved cardiovascular risk factors. the common adverse events included periph- eral edema which was responsive to dose reduction and diuretics, and transient hyperglycemia. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ clinical course of children with gnao mutations causing a severe and distinctive movement disorder a ananth, a robichaux-viehoever, a hanson-kahn, , r cox, g enns, s jonathan, m willing, b schlaggar, y wu, j bernstein . stanford university, stanford, ca; ucsf, san francisco, ca; stanford university, palo alto, ca; washington university st. louis, st. louis, mo; washington university in st. louis, st. louis, mo . /jim-d- - . purpose of study mutations in gnao have been described in eight patients to date. while the majority of these patients had epileptic encephalopathy, two patients have a severe movement disorder as the prominent feature. we describe a series of patients with de novo gnao mutations with severe chorea, developmental delay, and hypotonia in the absence of epilepsy. methods used four patients with mutations in gnao as detected by whole exome sequencing were identified at institutions. we report the presentation, clinical course, and response to treatment of these patients. summary of results in all four patients, global develop- mental delay and hypotonia were present from infancy and onset of chorea ranged between the ages of – years. neuroleptic treatments were most effective in the baseline management of chorea. the chorea was gradually progres- sive and marked with episodes of severe, refractory ballis- mus requiring intensive care unit admissions in out of patients. exacerbations indirectly led to the death of of the patients. conclusions patients with gnao mutations can present with a severe, progressive movement disorder in the absence of epilepsy. exacerbations may be refractory to treatment and can result in life threatening secondary com- plications. early and aggressive treatment of these exacer- bations with direct admission to intensive care units for treatment with anesthetic drips may prevent some second- ary complications. however the chorea and ballismus can be refractory to maximum medical therapy. allan herndon dudley syndrome: a case report and review of the literature s dugan. university of utah, salt lake city, ut . /jim-d- - . case report allan herndon dudley syndrome (ahds, mim ) is an x-linked condition caused by muta- tions in slc a , which encodes mct , a t -specific transporter expressed in certain tissues. loss-of-function mutations prevent transport of t into cells, leading to deficient t within those cells but increased t in the per- iphery. clinically, affected males have severe hypotonia, global developmental delay or intellectual disability, and paroxysmal kinesigenic dyskinesia (a form of dystonia). hypothyroidism is usually diagnosed but found to be refractory to typical treatments. an elevated t level is a hallmark of the condition. we present a -month-old boy with microcephaly, hypo- tonia, developmental delay, failure to thrive, dystonia, and elevated t found to have an inherited mutation in slc a . he had been treated for hypothyroidism from very early in life without improvement in symptoms. we will discuss clinical presentation, natural history, pathophysi- ology, and management of this condition, including treat- ment with the t analogue triiodothyroacetic acid, which is not clinically available in the united states but which has been successfully imported internationally in some instances. this agent can enter cells even when the mct transporter is not expressed and may partially restore brain development in mouse models of the condition. this case underscores the importance of considering hypothyroidism as a potentially important clue to diagnosis rather than a nonspecific finding. t level should be rou- tinely checked in patients with unexplained developmental delays and hypotonia to screen for ahds. a massively parallel approach to assess the sequence-function relationship of recombinase a dj lawrence, , , dm fowler, gr smith, jd bloom , . fred hutchinson cancer research center, seattle, wa; university of washington, seattle, wa; university of washington, seattle, wa; university of washington, seattle, wa . /jim-d- - . purpose of study recombinase a (reca) and its homologs are crucial to dna repair in all organisms. in bacteria, reca also regulates the sos response, inducing cell cycle arrest and mutagenic polymerases. accordingly, reca can mediate antibiotic resistance through de novo mutation, integration and duplication of resistance genes, and induc- tion of a “persister” phenotype. to probe the function and evolution of reca, we developed and validated an innova- tive approach linking gene sequence with function for libraries of > unique reca mutants. methods used using deep mutational scanning, we gener- ated mutant libraries containing every codon mutation at each position of the e. coli reca gene. each variant was barcoded, giving each molecule a unique “id” sequence. using sequence subassembly, each full-length variant is reconstructed from short illumina reads, according to its id. the library is expressed in Δreca e. coli, which are exposed to ciprofloxacin, a dna damaging agent requiring functional reca for survival. the barcodes of surviving cells are sequenced to quantify each variant relative to the pre-selection library. summary of results we made libraries in biological tripli- cate, each with ∼ × variants. variants contain an average of . mutations, following a poisson distribution. we fully subassembled . × variants between two libraries, with ∼ variants partially subassembled. further sequencing will greatly increase the number of fully assembled variants. we performed selections on the libraries at , and ng/ml cipro and showed that ng/ ml is sufficient to inhibit reca- cells without affecting j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ reca+ cells. furthermore, we developed a software pipeline to analyze the results. conclusions we developed a cutting edge approach to study the sequence-function relationship of a gene involved in dna repair and antibiotic resistance, and created soft- ware necessary to analyze such data. in addition to the insights this study will provide on the function of reca, we also help lay the groundwork for techniques that can be generalized to answer a multitude of questions that were previously inaccessible to experimentation. diagnostic outcomes and relative cost of clinical whole exome sequencing mr ruzhnikov, , a alsadah, b mendelsohn, a alhariri, mr cilio, y wu, ej marco, e hsiao, j sullivan, j shieh, a slavotinek, eh sherr . stanford university, stanford, ca; university of california, san francisco, san francisco, ca; university of california san francisco, san francisco, ca; university of california, san francisco, san francisco, ca . /jim-d- - . purpose of study clinical whole exome sequencing (wes) is a valuable diagnostic and prognostic tool for suspected genetic disorders, yet remains inaccessible to many due to cost. our objective was to determine the diagnostic utility and relative cost of clinical wes for undiagnosed suspected genetic disorders in children evaluated at an academic referral center. methods used ours is a retrospective cohort of patients for whom clinical wes was ordered from november to august . patients seen in subspecialty clinics and/or the inpatient setting at ucsf benioff children’s and ucsf moffit/long hospitals were included. wes was ordered for individuals (n= ) and family trios (n= ) for a range of diagnoses as indicated by the ordering physician. the rate of clinical diagnoses made via wes and the cost relative to prior negative work-up were measured. summary of results the three most common clinical indi- cations for wes were global developmental delay and/or intellectual disability (gdd/id), autism spectrum disorders (asd), and epilepsy. a disease causing mutation was found in . % of patients with gdd/id, . % of patients with asd and . % of patients with epilepsy listed as either the primary or secondary indication for testing. a diagnosis was made in . % ( / ) of our total cohort. wes led to a change in the clinical impression for more than half ( . %) of the cases and . % of patients received a new treatment or supportive intervention as a result of their genetic diagnosis. with a mean prior cumulative testing cost per proband of $ , , exome sequencing was deter- mined to be cost effective in our cohort up to $ per family trio. conclusions clinical wes is a powerful diagnostic and prognostic tool for patients in an academic referral center, leading to a diagnosis nearly half of the time. wes was found to be cost effective relative to prior diagnostic testing costs. our study provides valuable evidence sup- porting the use of this test for patients with a presumed genetic disorder. a dominant mutation associated with bohring-optiz syndrome revealed during whole exome sequencing analysis c carlston, , t tvrdik, r mao, , h underhill . university of utah, salt lake city, ut; arup, salt lake city, ut; university of utah, salt lake city, ut . /jim-d- - . case report whole exome sequencing was performed on a six-year-old female patient with seizures of infantile onset, severe global developmental delay, dysmorphic fea- tures and failure to thrive. the patient is g-tube depend- ent and has cyclic vomiting, myopia, hypothyroidism, a submucosal cleft palate, protuberant cheeks, crooked wide-spaced teeth, tented lips, and hirsutism. mri showed a nearly absent corpus callosum. after sequen- cing the proband, both parents, and two unaffected sib- lings, a de novo nonsense mutation in asxl previously implicated as causative of bohring-opitz syndrome (bos) was identified in the proband. bos is a malforma- tion syndrome characterized by severe intrauterine growth retardation, poor feeding, profound mental retardation, trigonocephaly, prominent metopic suture, exophthalmos, nevus flammeus of the face, upslanting palpebral fissures, hirsutism, and flexion of the elbows and wrists with deviation of the wrists and metacarpo- phalangeal joints (hoischen et al., ). however, this particular asxl variant has also been reported seven times in the presumably unaffected individuals compris- ing the exome aggregation consortium (exac) database. although the phenotype of bos matched the patient, the presence of this purportedly dominant variant in the exac database introduced ambiguity in the result inter- pretation. further investigation found that acquired somatic mosaicism during hematopoietic clonal expan- sion for asxl variants (including truncating mutations) are known to occur with aging. consideration of such phenomena is important when employing databases to evaluate the likelihood of pathogenicity for a genetic variant during whole exome sequencing. ehlers-danlos syndrome, progeroid type, caused by a novel mutation, p.(cys ser) in b galt in a child with joint laxity, growth retardation, dysmorphic facial features and novel eye findings including bilateral colobomas t arunrut, m sabbadini, m jain, f scaglia, a slavotinek . university of california, san francisco, san francisco, ca; baylor college of medicine, houston, ca . /jim-d- - . purpose of study to report novel ocular findings in a child with a novel missense mutation, p.(cys ser) in b galt . j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ methods used retrospective clinical evaluation and chart review. summary of results we present a yo female with a dis- tinctive phenotype comprising developmental delays, pre- and postnatal growth restriction, striking joint laxity and scoliosis. her ocular findings included proptosis, iris and optic nerve colobomas and posterior subcapsular cataracts. photographs showed progressive thinning of skin and adipose atrophy. she had a normal echocardiogram and brain mri scan. there was no relevant family history or consanguinity. whole exome sequencing revealed homozy- gosity for c. t > a, predicting p.(cys ser) in b galt . the substitution was predicted to be damaging, occurred within a highly conserved region and was present at a frequency of . in controls. segregation of the mutation was in keeping with autosomal recessive inheritance. mutations in b galt cause ehlers-danlos syndrome (eds), progeroid type, and larsen syndrome. in mutation positive patients (n= ; were from one family with the same mutation), commonest features were short stature ( / ), joint hypermobility/dislocations ( / ), skin hyperextensibility ( / ) and dysmorphic facial features ( / ) that were progeroid in only two patients. learning disability ( / ) and radioulnar synostosis ( / ) were also frequent. glaucoma ( / ) and megalocor- nea ( / ) were noted in one family, but the eye defects seen in the proposita have not been reported. another mutation, p.arg cys, in b galt was associated with reduced decorin and biglycan synthesis in fibroblasts. decorin and biglycan are small leucine-rich proteoglycans that regulate collagen fibril and matrix assembly in the cornea and mutations in decorin cause hereditary stromal corneal dystrophy. conclusions our patient with a novel mutation in b galt has distinctive eye findings, most likely a new phenotypic feature, although a different genetic etiology cannot be excluded. neonatal pulmonary iii concurrent session : pm friday, january , maternal race/ethnicity (re) and infant genetic ancestry are associated with survival without bronchopulmonary dysplasia (bpd) in preterm newborns treated with inhaled nitric oxide (ino) rl keller, s oh, d torgerson, p ballard, s huntsman, e burchard, d black, r ballard . ucsf, san francisco, ca; ucsf, san francisco, ca; medicine, ucsf, san francisco, ca . /jim-d- - . purpose of study in the trial of late surfactant (tolsurf), all infants received ino. infants of mothers with african american (aa) re had higher rates of survival without bpd. we sought to determine the relationship of re to survival without bpd after adjustment for confoun- ders, and to evaluate the effect of maternal re and infant genetic ancestry in logistic regression (lr) models. methods used infants enrolled in tolsurf [≤ wks’ gestational age (ga), ventilated at – d)] were included. the primary outcome was survival without bpd (deter- mined at wks’ ga by physiologic o /flow challenge). dna was isolated from tracheal aspirate samples following parental consent. infants were genotyped at > , single nucleotide polymorphisms on the axiom lat array (worldarray , affymetrix). global proportions of african (afr), european (eur) and native american ancestry were estimated using the program admixture. mixed effects lr accounted for clustering by study site and infants of multiple gestation. potential co-variates were considered for inclusion if associated with re and a risk factor for abstract table models for prediction of survival without bpd full cohort (n= ) genetic cohort (n= ) or( % ci) p value or( % ci) p value or( % ci) p value afr ancestry . ( . , . ) . aa . ( . , . ) . . ( . , . ) . hispanic . ( . , . ) . . ( . , . ) . other . ( . , . ) . . ( . , . ) . birth weight . ( . , . ) . . ( . , . ) . . ( . , . ) . birth weight centile . ( . , . ) . . ( . , . ) . . ( . , . ) . male sex . ( . , . ) . . ( . , . ) . . ( . , . ) . multiple gestation . ( . , . ) . . ( . , . ) . . ( . , . ) . rss (mapxfio ) at study entry . ( . , . ) < . . ( . , . ) < . . ( . , . ) < . j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ bpd; our final model was informed by fit. for evaluation of re and ancestry, only infants with adequate quality dna sample were included. summary of results see table. white/eur ancestry are referent groups. conclusions maternal aa re and infant proportion of afr ancestry had similar effects on increased survival without bpd in infants treated with ino. further evalu- ation of the genetic basis for this relationship is warranted, particularly as response to manipulation of the no pathway differs in aa in other settings. early postnatal hyperoxia increases lung wnt a and mmp mrna levels in growth restricted rat pups ra knecht, y yang, c zou, a sainz, l joss-moore. university of utah, salt lake city, ut . /jim-d- - . purpose of study intrauterine growth restriction (iugr) increases the risk for postnatal lung disease. iugr is often accompanied by additional postnatal stressors associated with respiratory management. we previously showed, in the rat, that iugr combined with postnatal hyperoxia, induces sex-specific structural and functional changes in the developing lung. structural and functional changes in the developing lung are frequently associated with alterations in wnt signaling, and subsequent transcription of wnt output genes. however, the effects of iugr combined with a postnatal stressor such as hyperoxia on lung mrna levels of wnt ligand, wnt a, and wnt output gene mmp in the rat are unknown. we hypothesized that the combination of hyperoxia and iugr would sex-specifically alter lung mrna levels of wnt a and mmp in the rat. methods used iugr was induced by ligation of intrauter- ine arteries. control and iugr rat pups (and dams) were exposed to hyperoxia ( % o ) or room air from postnatal days – (developing lung), then room air to postnatal day (mature lung), when rat pups were killed and lungs harvested. real-time rt pcr was used to measure lung wnt a and mmp mrna levels. summary of results results are mean±sd compared to ra-con. lung wnt a and mmp mrna levels were not altered by iugr alone in male or female rats. lung wnt a mrna levels were increased by hyperoxia alone in male ( ± %) and female ( ± %) rats, and further increased by the combination of iugr and hyperoxia in male ( ± %) and in female ( ± %) rats. lung mmp mrna levels were not affected by hyperoxia alone in male or female rats, but were increased by the combin- ation of hyperoxia and iugr in male ( ± %) and female ( ± %) rats. conclusions the combination of hyperoxia and iugr increases lung mrna levels of wnt a and mmp in the rat. in contrast to our hypothesis, the alterations in wnt a and mmp mrna were not different between male and female rats. we speculate that our previously observed sex- specific alterations in lung structure and function in the context of iugr with hyperoxia may result from other sex- specific signaling pathways. invasive mechanical ventilation for days does not alter proliferation of cardiac myocytes compared to non-invasive nasal ventilation n punnanitinont, r hicks, h emerson, j orchard, z wang, m dahl, d null, b yoder, k albertine . university of utah, salt lake city, ut; lawrence university, appleton, wi; uc, davis, davis, ca . /jim-d- - . purpose of study pulmonary hypertension (pht) often complicates bronchopulmonary dysplasia in preterm infants. we recently showed that former premature lambs supported by invasive mechanical ventilation (imv) for d after birth have indicators of pht including right ventricu- lar hypertrophy and persistent muscularization of pulmon- ary arterioles at mo and mo corrected postnatal age (equivalent to yr and yr corrected postnatal age, respect- ively, in humans). the purpose of this study was to deter- mine if d of imv acutely increases cardiac myocyte proliferation. methods used premature lambs (∼ d gestation (equiva- lent to ∼ wk gestation in humans); term ∼ d), treated with antenatal steroids, postnatal surfactant and caffeine citrate were managed by imv for d. the control group was premature lambs supported by non-invasive ventilation (niv) via their nose for d, a respiratory support mode that leads to better lung outcomes. the heart was stopped by potassium chloride injection, then placed in iced saline followed by perfusion of the coronary arteries with iced formalin. tissue sections were immunostained for prolifer- ating cell nuclear antigen (pcna) and analyzed morpho- metrically to quantify the number of immature cardiac myocytes proliferating at the end of d of respiratory support. summary of results percentage of pcna-positive nuclei in immature cardiac myocytes (one nucleus per cell in lon- gitudinal sections in situ) was the same between the two groups of premature lambs: ± percent for the imv group (n= ) and ± percent for the niv group (n= ). conclusions three days of imv did not acutely affect pro- liferation of immature cardiac myocytes compared to niv. morphometric measurements of myocyte volume, an index for cardiac myocyte hypertrophy, are underway. these same morphometric analyses are being performed on hearts of former premature lambs at mo and mo cor- rected postnatal age. hl , hl , lu internship, division of neonatology. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ perinatal nicotine exposure induces mesenchymal myogenic differentiation, but not epithelial-mesenchymal transition in rat offspring lungs h shen, r sakurai, m gong, j liu, vk rehan. los angeles biomedical research institute at harbor-ucla medical center, torrance, ca . /jim-d- - . purpose of study perinatal nicotine exposure induces alterations in lung structure and function including lung fibrosis in rat offspring. whether epithelial-mesenchymal transition (emt), a known contributor to pulmonary fibro- sis, occurs following perinatal nicotine exposure is not known. methods used time-mated, first-time pregnant, pair-fed sprague dawley rat dams received either placebo (diluent) or nicotine [ mg/kg, s.c.] in ml volumes daily from embryonic day (e) to postnatal day (pnd) . following delivery at term, pups breast feed ad libitum. lungs were isolated at pnd , and using western analysis, q-rt-pcr and immunohistochemistry processed for evidence of emt. to gain further supportive evidence for nicotine-indued emt, embryonic day primary rat lung alveolar type ii cells (atii) were cultured and treated with nicotine ( − m to − m) for h. summary of results by western and qrt-pcr analysis, protein level of α-smooth muscle actin, fibronectin, and calponin (markers of fibroblast differentiation) increased significantly. however, hydrophobic proteins which are in charge of stabilizing the respiratory surface of mammalian lungs (surfactant proteins b and c) and cholinephosphate- cytidyl transferase-α (all epithelial markers) showed no sig- nificant changes. typical characteristics of emt, e-cadherin, n-cadherin, and fibroblast specific protein- , were also not significantly different between the nicotine exposed and control rats. data from the double immunos- taining of lung sections and in vitro treated atii cells also strongly supported the western data, indicating the absence of emt. conclusions enhanced myogenic profile, but unaltered specific surfactant proteins and other epithelial markers suggest a mechanistic link between nicotine exposure and myogenic differentiation, but no emt, as evidenced by the absence of the loss of e-cadherin or gains in n-cadherin and fsp- . these data suggest that perinatal nicotine exposure results in mesenchymal myogenic differentiation, but not emt, as a possible contributor towards the nicotine-induced myogenic lung phenotype [supported by nih (hd , hd ; trdrp ( rt- , rt- )]. from mouse development to sheep lung injury ns bhopal, c li, m dahl, k albertine, d mathur, p minoo . lac+usc medical center & children’s hospital los angeles, los angeles, ca; university of southern california, los angeles, ca; university of utah, salt lake city, ut . /jim-d- - . purpose of study bronchopulmonary dysplasia is thought to arise from arrest of lung development. mice & sheep models are useful for studying human bpd. here, we examined expression of novel genes identified in a mouse model of lung development, in lambs exposed to invasive or non-invasive ventilation. methods used genes of interest were identified by micro- array of mouse lung tissue rna during development. a select group with relevant purported functions included cyr , egr , slit & slitrk . expression of genes was examined in sheep lungs delivered at gestational ages (ga) ranging from to days (term). we also examined expression in lungs from groups of preterm sheep deliv- ered at ga. group was exposed to invasive mechan- ical ventilation (mv) & the other was on non-invasive high frequency nasal ventilation (hfnv). ventilation was for or days. rna was isolated & gene expression assessed by quantitative pcr. summary of results in uninjured sheep lungs egr , slitrk & cyr remained unchanged between to ga, but increased significantly at term. slit remained con- stant. in ventilated lambs, egr & cyr increased in both mv & hfnv groups on day . this increased adaptation was greater in hfnv compared to mv group. after days, egr & cyr decreased significantly in both groups. no change in slit occured on day in either group. slitrk decreased in both mv & hfnv groups on days and . conclusions our study found progressive increase in egr , cyr & slitrk mrna during fetal sheep lung develop- ment. this novel finding suggests that expression of these genes is needed for normal pulmonary maturation & adap- tation at birth. egr & cyr adaptation is more robust in hfnv vs mv ventilated preemies on day , suggesting possible association with better outcome. slit & slitrk , which have not been described in lung development or injury were decreased in injured lungs. while the results are preliminary, they suggest adaptive changes in expression of developmentally critical genes in the lung in response to preterm birth. supported by: nhlbi and the hastings foundation. one year pulmonary outcomes in the trial of late surfactant (tolsurf) rl keller, e rogers, e eichenwald, a hibbs, d black, p ballard, r ballard . ucsf, san francisco, ca; neonatology, ut houston, houston, tx; neonatology, case western univ, cleveland, oh; ucsf, san francisco, ca . /jim-d- - . purpose of study infants in tolsurf were randomized to late surfactant vs sham; all received inhaled nitric oxide. there was no difference in the primary outcome of survival without bronchopulmonary dysplasia (bpd) at wks’ post-menstrual age, determined by physiologic o /flow reduction (ballard ra, j pediatr, in press). we evaluated the effect of treatment on novel pulmonary outcomes at one year corrected age (ca). methods used infants were eligible for tolsurf if born ≤ / wks’ gestational age (ga) and ventilated at – d. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ those with anomalies/syndromes or unlikely to survive d were excluded. of enrolled, infants were dis- charged, died after discharge. we collected data on respiratory morbidity by parental surveys at , , and mos ca. morbidity was determined at each survey if parents reported medications (diuretic, bronchodilator, inhaled or systemic steroid, pulmonary vasodilator) or hos- pitalization for respiratory cause, or home respiratory support. infants were classified into novel outcomes, based on resource utilization over the st year: no pulmonary morbidity (no pm) if no morbidity reported vs any pm, and persistent pulmonary morbidity (ppm) if morbidity reported in ≥ surveys vs no ppm if non- persistent or no morbidity. we analyzed the effect of treat- ment assignment (late surfactant vs sham) on these out- comes with gee, to account for clustering of siblings, adjusting for imbalances in baseline characteristics. summary of results there were no differences in ga ( . ± . vs . ± . , p= . ), male sex ( vs %, p= . ), percent with intrauterine growth restriction (iugr ≤ th percentile, vs %, p= . ), or maternal race/ ethnicity (p= . ) in treatment (trt) versus control (ctl) groups. however, infants in the trt group were less likely to be products of multiple gestation ( vs %, p= . ), and they had younger mothers ( . ± . vs . ± . years, p= . ) with less education (p= . ). / ( %) of infants were classified as no pm and / ( %) as ppm. adjusted relative benefit for trt vs ctl was . ( . , . ; p= . ) for no pm and . ( . , . ; p= . ) for no ppm. conclusions there was no significant benefit of late sur- factant treatment on one year outcomes of no pm and no ppm in tolsurf. ventilation affects mechanical properties of cerebral arteries in preterm lambs m converse, k nye, k monson, k albertine . university of utah, salt lake city, ut; university of utah, salt lake city, ut . /jim-d- - . purpose of study critical development of cerebral blood vessels occurs in the final weeks of pregnancy, making preterm infants more susceptible to both intraventricular hemorrhage and cerebral hypotension/hypertension. ventilation of preterm has been shown to affect the devel- opment of the pulmonary vasculature; however, the effect of this treatment on the development of cerebral blood vessels remains unknown. methods used pregnant ewes carrying single or twin fetuses at – days (d) of gestation (term ∼ d ges- tation) were used. lambs were delivered via cesarean section and divided into three groups: a group managed by high-frequency nasal ventilation (hfnv, n= ), a group managed by intermittent mandator ventilation (imv, n= ), and a non-ventilated group (n= ). both hfnv and imv lambs were ventilated for days while non-ventilated lambs were euthanized at birth. immediately following death, middle cerebral arteries (mcas) were collected for mechanical testing. in some cases, both left and right mcas from the same animal were tested. in total, mcas each were tested from the hfnv lambs, mcas from the imv lambs, and mcas from the control group. after being subjected to various preconditioning cycles within the physiological range (both axial and circumferen- tial), vessels were stretched axially to failure under a con- stant internal pressure of . kpa. summary of results the mean ultimate stress of both ven- tilated groups (hfnv, imv) were larger than that of the control group, but only the hfnv group showed a statis- tically significant difference (p= . ). no statistical sig- nificance was found for the maximum stiffness nor any associated stretch values. conclusions these studies show that ventilation of prema- ture lambs has a significant effect on the mechanical prop- erties of the cerebral blood vessels. this finding has clinical relevance given the vascular pathologies associated with the brain of premature neonates. while these studies show an increase in the mechanical strength, the underlying mech- anism behind these changes, and therefore any interpret- ation of their associated pathologies remains unclear. future work will be done to explore changes to the vessel microstructure, with specific emphasis on changes to colla- gen cross-links. randomized controlled trial of nebulized n-acetylcysteine in a newborn pig model of meconium aspiration syndrome aa simones, a lampland, r reed, m mammel, c worwa, m toombs, a ginder, kd roberts . children’s hospitals and clinics of minnesota, saint paul, mn; university of minnesota masonic children’s hospital, minneapolis, mn . /jim-d- - . purpose of study meconium aspiration syndrome (mas) accounts for approximately , infant deaths in the united states each year. exogenous surfactant has shown clinical benefit in both laboratory and clinical studies, however since institution into clinical practice overall mor- tality rates are unchanged. agents that alter the physical properties of meconium have not been studied. we hypothesized that nebulized n-acetylcysteine (nac), a drug with known mucolytic and anti-inflammatory properties, in addition to surfactant will improve oxygenation and venti- lation and decrease short-term markers of inflammation in a piglet model of mas. methods used we induced mas in thirty newborn piglets by intra-tracheal administration of human meconium. once mas was achieved piglets were randomized into one of three groups: control (c), surfactant (s), and surfactant plus nebulized n-acetylcysteine (nac). short-term respira- tory physiology endpoints, ventilator settings, vital signs, and arterial blood gases were monitored and recorded every – minutes for the -hour study period. at study end, blood was sampled for serum interleukin levels and tnf-α. lungs were dissected for analysis of wet/dry ratio, histologic scoring, and analysis of interleukin levels/tnf-α in tissue homogenate. summary of results compared to controls both treatment groups showed similar increases in compliance (c vs s j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ p= . , c vs nac p= . ), decreased mean airway pressure (c vs s p= . ; c vs nac p= . ), and decreased peak inspiratory pressure (c vs s p= . ; c vs nac p= . ). atelectasis scores were lower in both treat- ment groups (c vs s p= . ; c vs nac p= . ). the surfactant group showed improved pao (p= . ) and oxygenation index (oi) (p= . ), whereas pao and oi in the surfactant+nac group were indistinguishable from controls. wet-dry ratios and interleukin levels/tnf-α were not different between any of the groups. conclusions nebulized nac does not appear to be a beneficial adjuvant to surfactant in this mas model. our data suggests use of nebulized nac may actually be detri- mental as piglets treated with nebulized nac had worse oxygenation than those treated with surfactant alone. neonatology general iii concurrent session : pm friday, january , evidence for mitotic transmission of nicotine’s epigenetic effects on male gonadal germ cell underlying offspring lung myogenic phenotype m gong, j liu, ns murty, vk rehan. harbor-ucla, torrance, ca . /jim-d- - . purpose of study perinatal nicotine exposure results in hyper-responsive lung phenotype, which is transmitted transgenerationally. by activating nicotinic acetylcholine receptors α (α nachr), perinatal nicotine exposure drives lung mesenchymal fibroblasts towards a myogenic phenotype, but the molecular mechanisms underlying the transgenerational (tg) transmission of the altered lung phenotype are not understood. we have shown that global dna methylation is increased in testes following perinatal nicotine exposure. we hypothesize that gonadal germ cell gene-specific (pparγ , α nachr, and wnt a) epigenetic alterations as the underlying mechanism for the tg trans- mission of perinatal nicotine-induced lung phenotype. methods used mouse male gonadal germ cells were cul- tured and treated with nicotine ( − m- − m ) for h at passage (p ); the cells were continued in culture up to p without any further exposure to nicotine; p , p , p and p cells were harvested-protein levels of pparγ , α nachr and wnt a were determined by western blot- ting; global nuclear chromatin methylation was analyzed by elisa and state-of-the art d chromatin methylation imaging (p -p ) and promoter-specific methylation for pparγ , α nachr and wnt a were determined via methylation-specific pcr. summary of results nicotine exposure affected chromatin methylation dose-dependently with peak increase at − m. importantly, this effect was carried forward with mitotic cell division. though there was some decrease in the transmis- sion of nicotine-induced increased chromatin methylation from p -p , the increase was clearly retained up to p , without any significant decrease from p to p , despite the fact that the cells were exposed to nicotine only at p . methylation of the pparγ promoter increased significantly, but those of α nachr and wnt a decreased significantly. nicotine’s effect on pparγ and α nachr promoter methylations, but not on wnt a, carried up to p . conclusions nicotine exposure affected chromatin methy- lation dose-dependently. nicotine’s epigenetic effects on pparγ and α nachr, but not wnt a are transmitted transgenerationally, potentially providing a novel mechanis- tic explanation for the tg transmission of perinatally cigar- ette smoke-induced lung phenotype. grants: nih-hd , hd ; trdrp- rt- , rt- . a year review of central line associated blood stream infection prevention effortsin the neonatal intensive care unit: are improvements sustainable? r koeppel, c uy, k quan. uci medical center, orange, ca . /jim-d- - . purpose of study significant reductions in central line associated blood stream infection (clabsi) in the neonatal intensive care unit (nicu) have recently been reported. however, very few published reports identify key strategies associated with sustained clabsi reduction. the purpose of this study is to review the effect of a quality improvement (qi) project on clabsi rates and to identify key strategies that are associated with sustained clabsi reduction at the nicu of the university of california, irvine medical center. methods used this is a retrospective, observational study over a year period of the effect of a clabsi reduction qi initiative. three analysis phases are evaluated: baseline ( – ), active intervention phase ( – ) in which culture change and multiple central line care prac- tices were implemented, and sustainment phase ( – ). clabsi rates were tracked quarterly throughout the active intervention and sustainment phase along with spe- cific practice changes. summary of results we demonstrated a steady decline in clabsi rate over a year time span and successfully reduced clabsi rates by % when compared to our base- line ( . vs . / line days, p=< . ). significant reductions in clabsi rates were seen during the active intervention phase in which the clabsi rate was reduced by % ( . vs . per line days). we have been successful in sustaining our clabsi rate reduction during the sustainment phase with a mean clabsi rate of . / line days. key sustainment strategies identified by the project team leaders include strict compliance to insertion and maintenance practices,hand hygiene audit tools with feedback, use of a closed-medication delivery system, focused review of every clabsi event to identify potential contributing factors or lapses in practice compliance and weekly displays of data (days between infection). conclusions implementation of qi processes that include strict compliance to best practices and decreasing central line entry by use of a closed-medication system was j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ associated with a significant and sustainable reduction in clabsi rates. this result has persisted to date. induction of heme oxygenase– attenuates the severity of sepsis in a non-surgical neonatal mouse model k fujioka, s lu, s wong, f kalish, h zhao, rj wong, dk stevenson. stanford university school of medicine, stanford, ca . /jim-d- - . purpose of study a complication of prematurity is neo- natal sepsis, which is characterized by systemic bacterial invasion and multi-organ failure. its pathogenesis is not fully known because of a lack of animal models. however, a distinct difference in inflammatory response from adults is hypothesized to be mediated by oxidative stress and apoptosis. the stress-response protein, heme oxygenase– (ho- ), can affect physiologic and pathologic states by its anti-inflammatory, antioxidative, and anti-apoptotic proper- ties. since ho- is developmentally regulated, we hypothe- sized that it plays a crucial role in the developing neonatal immune system and response to sepsis. methods used to induce sepsis, we used the non-surgical adult sepsis model created by starr et al, where a “slurry” is created by resuspending cecal contents from adult mice in % glycerol-pbs to mg/ml. to establish the ld , cecal slurries (cs) were given ip at various doses to d-old newborn wild-type (wt) fvb mice and survival monitored for d. the ld dose was given to d-old pups, which were then sacrificed at h post-cs treatment for measure- ments of liver and lung ho activity. to study the effect of ho- deficiency on survival, we treated d-old ho- het- erozygote (het, ho- +/−) pups as described above. finally, to study the protective role of ho- induction, -mmol heme/kg was given sq to d-old wt mice h prior to sepsis induction and then monitored for survival. summary of results a dose-dependent effect on mortality was found with an ld of . mg/g. at this dose, ho activity significantly increased in the liver ( . -fold) and lung ( . -fold) h post-treatment. also, treatment with . mg/g of cs caused a . % mortality (p< . ) in het pups. finally, induction of ho- significantly reduced mor- tality to . % (p< . ) in wt pups. conclusions in summary, a partial deficiency in ho- increased the progression and mortality in a non-surgical sepsis model. furthermore, induction of ho- significantly reduced the mortality in wt pups. thus, we conclude that ho- may confer protection against sepsis in preterm infants. a lipid formulation of zinc protoporphyrin for the prevention of neonatal hyperbilirubinemia due to chronic hemolysis cm konecny, , k fujioka, s wong, s lu, f kalish, h zhao, rj wong, dk stevenson . stanford university school of medicine, stanford, ca; uc san diego school of medicine, la jolla, ca . /jim-d- - . purpose of study metalloporphyrins are potent competi- tive inhibitors of heme oxygenase (ho), the rate-limiting enzyme in bilirubin production. infants with hemolytic disease (e.g. g pd deficiency, abo/rh incompatibilities) have increased bilirubin production rates and, if left untreated, can develop severe hyperbilirubinemia. recently, we have created a lipid-based formulation of zinc protopor- phyrin (zl) that is orally absorbable with no photo- or chemical toxicity and effectively reduces liver ho activity after a single heme-load (pediatr res, in press, ). here, we extend these studies to evaluate the efficacy of zl in newborn pups exposed to repeat heme loads as in chronic hemolysis. methods used vehicle (v), zl ( mmol/kg), or zinc deu- teroporphyrin bis glycol (zbg, mmol/kg, shown previ- ously to effectively inhibit ho (pediatr res : , ) was given intragastrically to d-old fvb pups. after . h, pups were injected sq with -mmol heme/kg and again h later. h after the nd heme load, liver and spleen ho activity was measured and expressed as fold change from controls. differences were deemed significant at p ≤ . . summary of results treatment with repeat heme loads (vhh) increased liver and spleen ho activity . - and . -fold over controls (vvv), respectively (see table ). pre-treatment with zl (zl-hh) significantly decreased this heme-mediated increase in liver ho activity by % with no effect on the spleen. in contrast, pre-treatment with zbg (zbg-hh) significantly reduced heme-mediated increases in liver ( %) and spleen ( %) ho activity. conclusions in summary, zl effectively inhibits the induc- tion of liver ho activity following repeat heme loads after a single oral dose comparable to that of zbg, albeit at a higher dose. since the liver is primarily responsible for degrading heme during hemolysis, a compound that targets the liver may be the most desirable. thus, zl is attractive abstract table % mortality for each group as a function of cs dose, mg/g (ld = . ) . . . . . wt wt wt het wt +heme wt wt . % (n= ) . % (n= ) . % (n= ) . % (n= ) . % (n= ) . % (n= ) . % (n= ) abstract table fold change in ho activity over control (vvv). (*p< . vs vhh) vvv vhh zl-hh zbg-hh liver . ± . (n= ) . ± . (n= ) . ± . * (n= ) . ± . * (n= ) spleen . ± . (n= ) . ± . (n= ) . ± . (n= ) . ± . * (n= ) j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ for use in preventing hyperbilirubinemia in infants with chronic hemolysis. surgical procedures increase progression and duration of retinopathy of prematurity (rop) c torr, b yoder, j beachy. univeristy of utah, salt lake city, ut . /jim-d- - . purpose of study rop is a proliferative neovascular com- plication of preterm birth. many preterm infants at risk for rop undergo general surgical procedures. the effect of surgery on progression or duration of rop is unknown. we hypothesized that infants who undergo surgical proce- dures will have progression and longer duration of rop. methods used we performed a retrospective chart review of infants born from january to december . inclusion criteria were: gestational age< weeks and/or birth weight< g and serial ophthalmologic examinations for rop. infants were divided into groups based on pres- ence or absence of surgical procedures. rop progression was defined as any advancement in stage of rop classifica- tion documented at the st scheduled exam following surgery. rop duration was defined as time from st description of stage disease until the st exam document- ing regression. summary of results seventy-six infants met inclusion cri- teria. forty-nine ( %) infants had a surgical procedure and ( %) had rop progression immediately following surgery with ( %) eventually requiring laser interven- tion for rop. one infant at weeks post menstrual age (pma) had regressing stage prior to surgery and week later had pre-threshold disease and eventually required laser therapy. median duration of rop was . weeks for infants who had surgery compared to . weeks in those that did not (p . ). infants that required surgery were younger (gestational age . vs . weeks) and weighed less at birth ( g v g) compared to infants who did not have surgery (p= . ). for infants who had surgery, there was no difference in gestational age or birthweight between those infants who did and did not demonstrate progression of rop. conclusions extremely preterm infants who underwent surgery demonstrated an increased risk for progression of rop and longer duration of the stage rop regardless of pma. we speculate that there are risk factors related to the intra-operative procedure and/or post-operative response that, if identified, may be modifiable resulting in better visual outcomes for these high-risk infants. effect of acute intrauterine ischemia on nrf and antioxidant defenses in the rat pup brain e calma, t nguyen, m zhang, t liu, g power, ab blood , . loma linda univ, loma linda, ca; loma linda univ, loma linda, ca . /jim-d- - . purpose of study hypoxic ischemic encephalopathy causes neurodevelopmental delay or death in up to out of every live births in the united states. oxidative stress plays a major role in tissue injury during and after hypoxia/ischemia. nuclear factor (erythroid derived )-like (nrf ) is a transcription factor that upregulates the expression of antioxidant enzymes such as heme oxygenase- (ho- ) and superoxide dismutase (sod), potentially increasing endogenous defenses against oxida- tive stress. we hypothesized that the nrf pathway is upre- gulated in the brains of rat pups following acute in utero hypoxic stress. methods used under % isoflurane in o , the uterine arteries of pregnant rats at days gestation (e ) were clamped for min to induce fetal hypoxia. samples of fetal brains were collected after birth to measure sod, ho- and markers of oxidative stress (nitrotyrosine, carbo- nylated protein). nuclear nrf levels were also measured in brains h after birth. to isolate the effects of surgery itself from isoflurane and o , additional rat pups were studied with simulated anesthesia but no surgical incision. summary of results hypoxic exposure was effective as shown by decreased birth weights and reduced litter sizes. contrary to our hypothesis, we found no significant differ- ences in signs of oxidative defenses or stress in brains of pups exposed to hypoxia or sham surgery. instead, however, both groups differed from the untreated controls, suggesting the surgical intervention itself had a greater effect than hypoxia. compared to controls, hypoxia and sham groups both had ) no change in nuclear nrf levels, ) increased ho- and sod levels, ) decreased nitrotyro- sine levels, and ) no changes in carbonylated protein levels. these findings indicate that any increase in oxidative stress was adequately compensated for by increases in anti- oxidant enzymes. rats exposed to % o on e , with or without isoflurane, demonstrated significantly elevated ho- and sod activities h after birth. conclusions exposure to % o during surgery, rather than the surgery, isoflurane, or hypoxic stress, induces upregulation of antioxidant defenses. future studies should determine the effect of maternal surgery and supplemental o on the nrf -antioxidant enzyme pathway. benzyl alcohol poisoning resurfaces in chronically ventilated preterm lambs k zuspan, s bowen, c bradford, l pettet, m dahl, d null, b yoder, r ward, k albertine . university of utah, salt lake city, ut; uc davis, davis, ca . /jim-d- - . purpose of study benzyl alcohol is commonly used as a bacteriostatic vehicle in various formulations. examples are bacteriostatic sodium chloride and bacteriostatic water for intravenous administration. however, benzyl alcohol poi- soning in neonates was reported in the s (gershanik j, n engl j med ; menon pa, am j perinatol ; mccloskey se, j pharm sci ). human premature neo- nates who received infusions of formulations with benzyl alcohol developed respiratory distress, deterioration of multiple organ systems, hypotonia, and eventually died j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ (gasping syndrome). physiological indices of deterioration included metabolic acidosis, systemic hypotension, and edema. severity of the syndrome in human and animal neo- nates is greater with more immaturity. we report occur- rence of this syndrome in chronically ventilated premature lambs. methods used six premature lambs were affected (deliv- ered at ∼ d gestation, term is ∼ d; m:f : ; . ± . kg birth wt, mean±sd). the lambs were supported by standard methods in our laboratory for chronic ventila- tion of premature neonates, including antenatal steroids and perinatal surfactant replacement. summary of results all lambs developed respiratory dis- tress of prematurity. all lambs developed metabolic acid- osis, systemic hypotension, hypotonia, and oliguria (table ). bicarbonate and dopamine were infused to all lambs, beginning at – h of life. gasping became evident after h. pleural and pericardial effusions, and ascites were evident at necropsy. conclusions benzyl alcohol poisoning occurred in the chronically ventilated preterm lambs. formulations that contained benzyl alcohol included ml vials of sterile water, sodium heparin, lorazepam, and calcium gluconate. we stopped using these formulations; no further instances of benzyl alcohol toxicity have occurred. our results provide a reminder that formulations containing benzyl alcohol as a bacteriostatic preservative are detrimental to neonates. hl . preterm birth decreases pparγ protein abundance in the ileum of chronically ventilated premature lambs la ruybal, l dong, m dahl, k albertine, l joss-moore. university of utah, salt lake city, ut . /jim-d- - . purpose of study premature neonates supported by inva- sive mechanical ventilation (mv) often have feeding intolerance, and are at increased risk of developing necro- tizing enterocolitis (nec). in contrast, premature neonates supported by non-invasive nasal ventilation feed better and have lower incidence of nec. agonists of pparγ, a nutrient-responsive transcription factor, protect against nec. a transcriptional target of pparγ that may also be important in nec prevention is the histone methyltransfer- ase, setd . the effect of preterm birth and mode of ventilation on pparγ and setd protein abundance in the ileum is unknown. we hypothesized that premature lambs supported by invasive ventilation will have lower ileal pparγ and setd protein abundance compared to ileum of premature lambs supported by non-invasive ventilation or unventilated term- born lambs. methods used premature lambs were managed by invasive mv or non-invasive nasal pulsatile flow ventilation® (npfv) for d (term equivalent age). both groups were fed ewe’s colostrum/mature milk. comparison group was unven- tilated term-born lambs. immunoblots were used to measure pparγ and setd protein abundance in ileal homogenate. summary of results premature lambs supported by inva- sive mv consumed less colostrum/milk over the d study period ( ± % ml/kg/d) than premature lambs supported by non-invasive npfv. compared to term-born lambs, preterm birth with mv or npfv decreased ileal pparγ protein abundance (mv: . ± . %; npfv . ± . %). compared to term-born lambs, preterm birth and invasive mv increased ileal setd protein abundance ( . ± . %); however, preterm birth and non-invasive npfv did not alter ileal setd protein abundance. conclusions preterm birth decreased ileal pparγ protein abundance regardless of ventilation mode. contrary to our hypothesis, protein abundance of setd was increased in the ileum of premature lambs supported by invasive mv. we speculate that increased setd protein abundance may be associated with aberrant histone methylation in ileum of premature lambs managed by invasive mv, and is the subject of further investigation. neonatology perinatal biology i concurrent session : pm friday, january , effects of post-injury dexamethasone therapy on brain infarct size in a rat model of neonatal hypoxic-ischemic encephalopathy b harding, , y li, q ma, l zhang . loma linda university children’s hospital, loma linda, ca; loma linda university, loma linda, ca . /jim-d- - . purpose of study hypoxic-ischemic encephalopathy (hie) is the most common cause of neonatal brain damage result- ing from asphyxia in the peripartum period and causes sig- nificant neurologic sequelae including intellectual disability and cerebral palsy. currently therapeutic hypothermia is the only accepted treatment in addition to supportive care for infants with hie. it has been previously shown that pre-insult dexamethasone treatment via intracerebroventri- cular injection (icv) in a rat model of neonatal hie pro- vides neuroprotection and decreases cell death. therefore, this study examined if post-injury local dexamethasone treatment would provide similar neuroprotective effects. methods used a modified rice-vannucci model was used with day old rat pups to represent term neonatal hie. abstract table hours ph hco -(meq/l) mean bp (mmhg) urine output (ml/kg/h) – . ± . . ± . ± . ± . – . ± . . ± . ± . ± . – . ± . . ± . ± . ± . – . ± . . ± . ± . ± . – . ± . . ± . ± . ± . – . ± . . ± . ± . ± . j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ pups were subjected to right common carotid artery liga- tion, followed by hypoxic treatment with % fio for hours. after hours of recovery they were treated with . mg dexamethasone or normal saline (ns) via icv injec- tion. hours following the treatment the pups were sacri- ficed, their brains were sectioned and stained with , , -triphenyltetrazolium chloride monohydrate (ttc), then photographed and analyzed to determine the overall percentage of brain infarct size. summary of results a total of pups were treated with dexamethasone (n= ) and ns (n= ) after the hypoxic-ischemic insult. there was not a significant differ- ence in the pups initial weight ( . ± . g vs . ± . g, p> . ) or weight gain after injury ( . ± . g vs . ± . g, p> . ) between the dexamethasone and control groups respectively. however, there was a significant reduc- tion in the overall percentage of brain infarct size seen hours after insult. the dexamethasone treated pups had an overall infarct percentage of . %± . % vs . % ± . % in the placebo treated pups (p< . ). conclusions this study suggests that local cerebral treat- ment with dexamethasone following hypoxic-ischemic injury can provide neuroprotective effects and significantly decrease local cell death. future studies are planned to evaluate the mechanism of neuroprotection as well as dif- ferent delivery methods such as intranasal application for easier non-invasive delivery. fetal leucine infusion increases lactate concentrations in late gestation fetal sheep a blake, p rozance, s wesolowski, r wilkening, ww hay, ld brown. university of colorado, aurora, co . /jim-d- - . purpose of study leucine is an essential amino acid with significant contributions to oxidative metabolism and growth. the effect of increased leucine supply on fetal metabolism has not been studied. we aimed to determine effect of an intravenous fetal leucine infusion (leu) on umbilical and fetal hindlimb blood flow and metabolism. methods used the umbilical and hindlimb circulations were catheterized in late gestation fetal lambs. fetal blood gas, hormone concentrations, umbilical and hindlimb blood flow rates, and fetal and hindlimb net substrate uptake rates were measured at baseline (bl, n= ) and after -hr leu (n= ) and -hr leu (n= ) at ∼ mmol/kg/hr. time periods were compared using a repeated measures anova. summary of results fetal plasma leucine concentrations increased with leu (bl: . ± . ; -hr: . ± . ; -hr: . ± . mm, p< . ). essential amino acids valine and threonine decreased by % and %, respect- ively (p< . ), and phenylalanine increased by % (p< . ). fetal arterial blood ph, pco , plasma igf- , and glucose concentrations did not change. fetal lactate concentration increased (bl: . ± . ; -hr: . ± . ; -hr: . ± . mmol/ml, p< . ). insulin increased at -hr but returned to bl by -hr (bl: . ± . ; -hr: . ± . ; -hr: . ± . ng/ml, p< . ). fetal arterial blood po decreased by % (p< . ). o content decreased by % at -hr (p< . ), however fetal hem- atocrit similarly decreased, likely the result of insufficient maternal blood transfusion to replace fetal blood removed. umbilical blood flow did not change, but hindlimb blood flow increased at -hr (bl: . ± . ; -hr: . ± . ml/min/ g hindlimb, p< . ). fetal and hindlimb glucose, oxygen, and amino acid uptake rates did not change; however, hindlimb lactate output increased at -hr (bl: . ± . ; -hr: . ± . ; -hr: . ± . mmol/min/ g, p< . ). conclusions leu for and hrs, which increased fetal plasma leucine concentrations % and %, respectively, had minimal effect on fetal substrate and oxygen utiliza- tion. fetal lactate concentrations increased by -hr, likely the result of fetal hindlimb production. further studies are needed to determine if leu reduced glucose oxidation, thus leading to increased lactate production. skeletal muscle growth is restricted despite maintained hindlimb blood flow and oxygen consumption in the late gestation iugr fetus l zastoupil, a blake, p rozance, s wesolowski, ww hay, r wilkening, ld brown. university of colorado school of medicine, aurora, co . /jim-d- - . purpose of study acute fetal hypoxemia redistributes cardiac output to vital organs such as the brain and away from the musculature. in situations characterized by chronic fetal hypoxemia such as iugr, reduced blood flow to skeletal muscle might decrease muscle growth and con- tribute to lifelong reductions in muscle mass. therefore, our objective was to determine the effect of chronic placen- tal insufficiency on hindlimb blood flow, metabolism and growth in the late gestation iugr fetus. methods used the hindlimb was catheterized with aortic and femoral venous sampling catheters in iugr (n= ) and control (con, n= ) fetal sheep at % gestation. hindlimb blood flow was measured using an ultrasonic transducer and normalized to g hindlimb weight. fetal hindlimb blood flow, substrate uptake rates and skeletal muscle weights were compared between con and iugr groups. summary of results iugr fetal lambs weighed % less and had lower arterial blood oxygen (– %), plasma glucose (– %), insulin (– %), and igf (– %) concen- trations with higher lactate concentrations ( %) compared to con (p< . ). iugr fetal hindlimb weight relative to fetal weight was % lower (p< . ) and hindlimb skel- etal muscle weights normalized to lower extremity limb length were ∼ % lower (p< . ). hindlimb blood flow was maintained in iugr (con . ± . , iugr . ± . ml/min/ g; p= . ). despite lower fetal glucose and oxygen concentrations, the hindlimb uptake rates for glucose (con . ± . , iugr . ± . mmol/min/ g) and oxygen (con . ± . , iugr . ± . mmol/min/ g) were similar in iugr and con and hindlimb lactate output rates tended to be higher (con . ± . , iugr . ± . mmol/min/ g; p= . ). j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ conclusions despite lower glucose and oxygen concentra- tions, glucose and oxygen uptake rates are maintained indi- cating increased extraction efficiency by hindlimb muscle in the iugr fetus. these results support previous findings of maintained whole-body glucose uptake and increased skel- etal muscle glut- transporter expression. we speculate that skeletal muscle adapts to chronic hypoxemia by main- taining oxygen metabolism to support basal energy require- ments, possibly by increased glycolysis and lactate production, at the expense of skeletal muscle growth. developmental changes in antioxidant defenses in the perinatal brain l kim, f najjar, m zhang, e calma, t nguyen, t liu, g power, ab blood. loma linda university, redlands, ca . /jim-d- - . purpose of study approximately out of every newborns are affected by perinatal cerebral hypoxia/ische- mia. tissue hypoxia/ischemia results in a great increase in reactive oxygen species that overwhelms antioxidant defenses and leads to tissue damage. endogenous antioxi- dant defenses include: ) heme-oxygenase (ho- ), ) superoxide dismutase (sod), and ) glutathione (gsh). a determination of the role of these enzymes in perinatal hypoxic/ischemic injury first requires a more complete understanding of their role in the transition from fetus to newborn, when brain tissue oxygen concentrations increase by more than four-fold. therefore, the purpose of this study was to characterize the levels of these antioxidant defenses during the perinatal period. methods used we collected brain and liver samples from rat pups at embryonic days e and e , and postnatal hours p h, p h, and p h. we also took adult samples for comparison. samples were homogenized by mincing in ice-cold lysis buffer. finally, we measured concentrations of ho- (by elisa) and gsh (by colorimetric metabolite assay), and activity of sod using kit assays (sigma-aldrich). brain and liver samples were also assayed for total antioxidant capacity. summary of results within hours after birth, we mea- sured a significant increase (∼ %) in brain ho- levels. sod activity was increased significantly at e compared to e and remained elevated until p h when concentra- tions were lower than all other timepoints. there were no significant changes in gsh concentrations at any time point. total antioxidant capacity of the brain tissue decreased significantly within hours after birth and remained low for at least hours. liver total antioxidant capacity also decreased significantly within hours after birth. conclusions these results indicate there is a perinatal upregulation of the antioxidant enzymes ho- and sod in the brain, but a decrease in total antioxidant capacity. we speculate that the decrease in total antioxidant capacity may be due to increased consumption of small molecule antioxidants, other than gsh, associated with the rapid increase in brain tissue po that occurs at birth. future studies will compare brain tissue to other organs, and measure levels of other specific antioxidants. hydrocortisone protects the brain from hypoxic-ischemic injury in neonatal rats kr salcedo-concepcion, y li, l zhang. loma linda university som, loma linda, ca . /jim-d- - . purpose of study hypoxic-ischemic encephalopathy (hie) is a major cause of neonatal disability and mortality. infants that acquire hie are at risk for developing neuronal diseases such as severe cerebral palsy, mental retardation, seizures, and other neurodevelopmental disabilities. hie brain damage is largely due to perinatal asphyxia and hypoxia prior to, during or after birth. inflammation has been shown to play a critical role in neonatal brain damage and is an important contributor to the pathogenic cascade. inflammation can both sensitize, as seen in intrauterine infections, and participate in the injury response to a hypoxic insult. in the present study, we modified a rice-vannucci model in rat pups to better understand the consequences of inflammation and hypoxic-ischemic (hi) brain injury and possible therapeutic interventions. previous studies have shown that pretreatment with dexamethasone, an anti-inflammatory steroid medication, in neonatal hi brain injury demonstrates a neuroprotective effect and decreases hi -induced infarct size. because dexamethasone may have detri- mental side effects, we explored the potential therapeutic use of hydrocortisone. the aim of this project was to develop a model to study the post-hi treatment effects of hydrocorti- sone. methods used we used a modified rice-vannucci model in rat pups. summary of results our results demonstrated that rat pups treated with hydrocortisone post the hi insult decreased brain infarct size. we further demonstrated that lps treatment prior to the hi insult significantly increased hi-induced brain infarction in neonatal rats. of importance, our study revealed that intracerebroventricular injection of hydrocortisone hours after the hi insult significantly reduced brain infarction in the pups that received lps. we also tested whether intrana- sal delivery of hydrocortisone had an effect in decreasing brain infarct size. although our initial result showed that post-hi intranasal delivery of hydrocortisone did not have a significant effect, this was likely due to dose being too low. conclusions ongoing studies are to increase the doses of intranasal delivery of hydrocortisone. our results suggest a potential therapeutic effect of hydrocortisone for hie in neo- nates. future studies are needed to investigate the mechanisms by which hydrocortisone acts in neuroprotection in the devel- oping brain. maternal tobacco smoke exposure impairs placental function and induces sex-specific alterations in fetal fatty acids c weinheimer, m fitzhugh, p singh, z wang, j jenkins, t larsen, m baack, k albertine, l joss-moore . university of utah, salt lake city, ut; sanford health research center, sioux falls, sd; university of utah, salt lake city, ut . /jim-d- - . purpose of study maternal tobacco smoke (mts) expos- ure sex-specifically programs adult-onset disease in humans j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ and rat models. the programming of many adult-diseases involves alterations in circulating fatty acid (fa) levels in the offspring. maternal-fetal fa transfer is regulated by pla- cental fa transporters. we previously showed that mts exposure sex-specifically alters fa transporter expression in the rat. however, the effect of mts on rat placental insuf- ficiency, placental histology and fetal fa levels is unknown. we hypothesize that mts exposure causes placental insuffi- ciency, changes in placental histology, and sex-specific changes circulating fetal fa levels in the rat. methods used pregnant rats were exposed to tobacco smoke (mts) or room air (control) from e to term (e ). fetal and placental weights were measured at birth. umbilical arterial blood flow was measured via doppler ultrasound on e and e . placental sections were used for histological examination. fetal serum fa levels were measured using direct transesterification and gas chroma- tography. summary of results mts decreased placental and pup weight of female and male offspring compared to sex- matched control. mts reduced umbilical arterial flow at e and e in female, and male placenta compared to sex-matched controls. female and male mts placentas had smaller labyrinth layer size, retention of glycogen-rich cells and the presence of larger, immature appearing, tropho- blastic giant cells. mts did not significantly affect circulat- ing fetal fa levels in female rat pups. however, mts altered circulating fetal fa levels in male rat pups (decreased palmitoleic, oleic and docosapentaenoic acid, and increased docosatetraenoic acid). conclusions mts exposure causes placental insufficiency, and changes in placental histology in female and male rat pups. despite similar placental changes in both female and male rat pups, mts sex-specifically alters circulating fetal fa levels in rat pups. we speculate that previously observed sex-specific differences in fa transporter expression may reflect sex-specific alterations in transcriptional regulation of transporters. epithelial membrane protein (emp ) deficiency alters placental angiogenesis mimicking features of intrauterine growth restriction a chu, c williams, m wadehra . ucla, los angeles, ca; nih, research triangle park, nc . /jim-d- - . purpose of study intrauterine growth restriction (iugr) is a poorly understood complication of pregnancy, affecting up to % of pregnancies, and is associated with disor- dered placentation. the objective of our study is to under- stand the role of epithelial membrane protein- (emp ) in human placentation and iugr. methods used . human placentas from normal and iugr-associated pregnancies were obtained. protein lysates for immunoblot analysis or whole sections fixed for immu- nohistochemistry were obtained. staining was performed for emp , cd for endothelial cells, hif a, and dolichos biflorus agglutinin (dba) for unk cells. . cell culture using human choriocarcinoma cells were created to overexpress an emp -gfp fusion protein or knock out emp expression via a specific shrna. cell migration and capillary tube formation assays were con- ducted. mrna and supernatant was isolated from cells for vegf pcr and elisa. . emp -null mice were generated using a conditional knockout allele for the emp gene. mice were bred; litters counted and weighed at birth. uterine tissues were also obtained at e . , e . , and e . , sectioned, and stained for emp , cytokeratin (trophoblasts), tomato lectin and cd (vascular structures), and dba. summary of results emp is expressed in placental villi and extravillous trophoblast cells, and expression is signifi- cantly reduced in human iugr placentas compared to normal pregnancies. in cultured human choriocarcinoma cells, emp levels produce a reciprocal regulation in hif α and vegf, sufficient to induce huvec tube forma- tion. emp -null mice demonstrate reduced litter sizes and placentas are hypovascular, with increased fibrin depos- ition, and increased number and persistence of unk cells. conclusions this study defines an important relationship between angiogenesis and unk regulation at the maternal- fetal interface via the tetraspan protein epithelial membrane protein- (emp ). we provide the first evidence of altered emp expression in human placentas with iugr. functional studies using cell lines suggest that emp regu- lates hif a and vegf levels within these cell populations. deletion of emp in mice reduces litter size by %, and also results in changes in placental vascularity, potentially via altered nk cell presence early in gestation. effect of perinatal development on nrf and antioxidant defenses in the rat pup brain t nguyen, e calma, l kim, m zhang, t liu, g power, ab blood . loma linda university, loma linda, ca; loma linda university, loma linda, ca . /jim-d- - . purpose of study at birth infants are exposed to a rapid to -fold increase in arterial and tissue oxygen tensions and the increase may be greater yet in infants who receive sup- plemental oxygen. thus there is risk of oxidative stress, but little is known about how antioxidant defenses change during the transition from fetus to newborn. many antioxi- dant enzymes are under the influence of a transcription factor called nuclear erythroid -related factor (nrf ). currently, nrf signaling in the regulation of antioxidant capacity in the fetal and newborn brain has not been studied. this research was undertaken to characterize the changes in nrf and antioxidant capacity in the brian before and after birth. methods used perfused rat pup brains were collected at fetal days e and e , and postnatal hours p h, p h and p h. samples were homogenized in ice-cold lysis buffer. western blot analysis was used to determine nuclear and cytosolic nrf protein concentrations. total antioxi- dant capacity, a measure of both small molecule and enzyme-mediated antioxidants, was determined in whole j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ brain homogenates from each of the time points above. nitrotryrosine and carbonylated proteins, both byproducts of oxidative stress, were also determined in whole brain homogenates. summary of results nrf levels in the nucleus increased with development from fetus to newborn with concentra- tions at p h significantly greater than e , e and p h. there were no signfiicant changes in carbonylated protein levels during development, but nitrotyrosine concentrations were sginficantly decreased at p h and p h compared to e . total antioxidant capacity decreased significantly within hours after birth and remained low for at least hours. conclusions results showed pronounced increase in tissue po at birth is not associated with an increase in tissue oxi- dative stress. the decrease in total antioxidant capacity may reflect the consumption of small molecule antioxidants necessary for prevention of oxidative stress at birth. the increase in nuclear nrf levels suggests an upregulation of antioxidant enzyme transcription takes place following birth. future studies will examine corresponding levels of specific nrf target enzymes and responses to hypoxic/ish- cemic stress. surgery ii concurrent session : pm friday, january , enhanced recovery in plastic surgery: a review of the literature and a proposal of actionable measures cv vu, s gupta. loma linda university, westminster, ca . /jim-d- - . purpose of study in , the world health organization (who) introduced a -item safe-surgery checklist that when implemented in general, non-cardiac surgeries saw striking reductions in morbidity and mortality. yet its effect- iveness in many surgical sub-specialties was less definitive, suggesting a need for evidence-based interventions that target the entire surgical experience. coincidentally, many surgical specialties have sought to achieve enhanced recov- ery after surgery (eras) for patients through evidence- based changes in perioperative care that aim to reduce sur- gical stress and hasten recovery. the purpose of this study was to explore the effectiveness of eras protocol across multiple specialties and to draft a preliminary evidence- based eras protocol for patients in plastic surgery. methods used an analysis of eras pathways across surgical specialties described in peer-reviewed literature was conducted to identify core multimodal components of eras protocols and to assess the effectiveness of these pathways in achieving four endpoints: reductions in stay, decreased post-surgical morbidity, and decreased costs. summary of results table and table . conclusions integration of eras protocols yields defini- tive reductions in hospital stay. however, current pathways fail to reliably improve morbidity and readmits. the emo- tional toll exerted on patients by complications and read- missions, along with the burdens of added costs, oblige a need for fine-tuning eras pathways to address all aspects of perioperative care to minimize surgical stress and wound-related complications. a call to action in the field of plastic surgery, where an optimal eras protocol has yet to be developed, is appropriate and necessary. development of an eras, in conjunction with a best prac- tices approach, is crucial in the face of changing healthcare system where cost-containment and optimizing patient out- comes are more important than ever. growing disparity in collection rates: the effect of the affordable care act in plastic surgery i campwala, n biskup, s motakef, s gupta. loma linda university, loma linda, ca . /jim-d- - . purpose of study on march , , the patient protection and affordable care act (aca) was signed into law. it required all americans to have health insurance by or pay a monthly fine. the uninsured rate has remained . % through the second and third quarter of . the previous low point was . % in the third quarter of . as of september , the aca had increased the number of insured by million. by , the number of uninsured is expected to go from the current million to million. there have been no studies that detail the effects of the aca on providers’ revenue. previous to the aca, our eight-plastic-surgeon practice had seen approximately – % of patients uninsured. in a preliminary study, we found that the aca has led to a sig- nificant decrease in the percentage of self-pay plastic surgery patients by an average of . %. theoretically, abstract table statistically significant outcomes upon eras application in studies length of stay complications readmits cost improved not improved/reported total abstract table proposed eras pathway for plastic surgery preoperative intraoperative postoperative –pre–admission patient counseling & education –minimize starvation/ dehydration –dvt and antibiotic prophylaxis –preoperative warming –multimodal prophylactic analgesia –opioid–sparing anesthetic regimen –best surgical techniques –euvolemia –antiemetics –minimize drains –intraoperative warming –postoperative warming –early mobilization –wound care –early resumption of oral hydration and diet –multimodal analgesia with opioids for breakthrough pain j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ this decrease should have increased revenue. this study seeks to quantitatively analyze the difference in revenue for our plastic surgery service over the time period impacted by the aca and the medicaid expansion. methods used plastic surgery billing information for january to december (before and after the start of the aca) was collected. the collection rates of the local managed medicaid aca provider, iehp, and the total of all other insurance payors were calculated by dividing matched payments by charges. collection rates were com- pared side-by-side in -month intervals using -tailed paired t-tests. summary of results table contrasts iehp collection rates and other payors. this study revealed that iehp col- lection rates are significantly lower than that of all other insurance payments (p-value< . ). conclusions the aca has decreased the number of unin- sured patients, but the growing division between the collec- tion rates of medicaid and other insurances will ultimately cause provider bias and changes in the finances of plastic surgery practices and healthcare services as a whole. lack of input specificity, great outcome variability, and imprecise risk calculations: pitfalls of the acs-nsqip risk calculator in plastic surgery c johnson, i campwala, s gupta. loma linda university, loma linda, ca . /jim-d- - . purpose of study surgeons have internally measured and monitored morbidity and mortality as metrics of quality for over years. american college of surgeons national surgical quality improvement program (acs-nsqip) created the surgical risk calculator to allow a risk-adjusted -day surgical outcome prediction. while acs-nsqip offers the only multidisciplinary surgical care predictor, it has not been validated in plastic surgery. methods used a retrospective analysis of all plastic surgery intradepartmental complications from a review of a quality assurance database from september through july was performed. preoperative risk factors were entered into the surgical risk calculator, and predicted outcomes were compared to actual morbidities. the differ- ence in average predicted complication rate versus the actual rate of complication was examined to assess the val- idity of the calculator in plastic surgery. summary of results within the study population of patients with complications (n= ), the calculator accurately predicted an above average risk for . % of serious complications. for surgical site infections, the average predicted risk for the study population was . %; this prediction was proven only . % accurate. the actual incidence of any complication in our plastic surgery prac- tice from september through june was . %. conclusions the most common complications in plastic surgery include seroma, hematoma, dehiscence, and flap-related complications. the acs risk calculator does not present rates for these risks. the calculator’s surgery input does not include many plastic surgery-specific proce- dures, which induces great variability to risk predictions. the difference in predicted versus actual complication rates indicates that this tool does not accurately predict outcomes in plastic surgery. to facilitate adequate patient care, further research is needed to develop accurate risk stratifi- cation tools in plastic surgery. preliminary clinical experience with deoxycholic acid in contouring submental fat dh lee, j chidester, s gupta. loma linda university, loma linda, ca . /jim-d- - . purpose of study “tech neck” is defined here as a maldis- tribution of submental fat, increased neck skin laxity, and loss of a youthful neck contour after repetitive downward screen viewing. with the addition of deoxycholic acid to a surgeon’s armamentarium, we now have the ability to non- surgically subtract as well as add volume from the whole face aesthetic, offering patients dynamic control over facial harmony with rapid recovery and minimal down time. we present our pilot experience using deoxycholic acid and offer a few technical pearls for whole face volume manipu- lation. methods used three female patients were injected with deoxycholic acid [atx- , kybella (kythera biopharmaceuticals inc., ca, usa)] in the submental region. immediately before injection, each patient’s whole neck aesthetics was assessed using the cervicomental classification scale (min-max: – ). anatomic boundaries were marked using sternocleidomastoid muscles laterally, abstract table months iehp charge capture all other charge capture p-values jan -jun . % . % . jul -dec . % . % . jan -jun . % . % . e– jul -dec . % . % . e– abstract table results outcomes correctly predicted complications average predicted risk in study population (n= ) actual incidence in practice (n= ) serious complication ( . ) . % ( . ) any complication ( . ) . % ( . ) surgical site infection ( . ) . % ( . ) venous thromboembolism . % ( . ) return to or ( . ) . % ( . ) j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ the hyoid bone inferiorly, and the inferior border of the mandible superiorly. deoxycholic acid was then adminis- tered in . ml aliquots ( mg/ ml) into the pre- platysmal fat. after completion of injection, a compression wrap was placed and removed the following day. summary of results patient demographics are summarized in table . pain was reported on a -point pain verbal descriptor scale. one patient developed a -minute transi- ent left-sided marginal mandibular nerve paresis following lidocaine injection. three days post-procedure, all patients denied any complications and were satisfied with the overall experience. conclusions deoxycholic acid offers a novel, minimally invasive approach to volume manipulation of the submen- tal region. reducing pre-platysmal fat will allow plastic sur- geons to extend facial contouring to include the suprahyoid neck. management and outcomes of incidental donor derived pulmonary embolism gr dincheva, el bush, p brandenhoff, m brzezinski, jp singer, j kukreja. ucsf, san francisco, ca . /jim-d- - . purpose of study pulmonary embolism (pe) may go undetected in donor lungs used for lung transplantation (lt). approximately % of donor lungs may have inci- dental pe. pe might be associated with either early graft failure or late complications in lt recipients. this report reviews our experience with detection of significant inci- dental donor pes and their treatment. methods used this is a single center retrospective cohort study of lts performed between / – / . our standard practice for lung recovery and preservation included in-vivo liters (l) antegrade flush with cold low- potassium dextran preservative followed by a l retrograde flush after cardiectomy. in we added an additional l ex-vivo retrograde flush prior to implantation. we defined significant pe as either large single and/or heavy embolus burden. summary of results in double lts performed, of the donor lungs had significant pe (incidence: . %). these had median intubation time of days (range: – ). after pe/s were noted, / lungs were flushed retro- grade with an additional – l preservative ex-vivo beyond the standard l to clear the emboli. the st pair of lungs had fat emboli; therefore, the recipient was not anticoagu- lated. the remaining received heparin infusion post-lt and had a ct scan with pe protocol weeks later. of these had a lower lobe (rll) infarct requiring a necro- sectomy months later; this pair was not flushed ex-vivo beyond the l standard. the nd underwent an ex-vivo donor lobectomy prophylactically of the lobe with the most pes and this subject showed a persistent rul pe for which anticoagulation was continued; and the rd, with the largest volume of flush, showed no evidence of pe at weeks. due to fluctuating pao /fio ratio we elected to support the latter on ecmo. median length of stay post-lt was days (range: – ). all patients survived to discharge. conclusions while the incidence of significant pe in donor lungs in our study was low, the short and mid term effects were detrimental. our cohort supports the use of additional flush ex-vivo. if pe is detected during flush a post-lt ct scan to look for pe and anticoagulation should be considered. these changes may improve outcomes in lt. institutions may need to adopt new strategies for donor lung management to successfully identify and treat inciden- tal donor pe. a retrospective study on demographic, clinical, and outcome data of women undergoing sacrospinous ligament fixation rj patel, jm heusinkveld, kd hatch. university of arizona, tucson, az . /jim-d- - . purpose of study pelvic organ prolapse (pop) occurs when muscles and ligaments of the pelvic cavity weaken. pop affects % of women over the age of , and , women annually receive some form of pop surgery. we evaluated differences in demographics, clinical characteristics, and intraoperative and short-term post- operative outcomes for patients with sacrospinous ligament fixation surgeries (sslf) versus any other pop surgery. methods used a retrospective chart review was per- formed among patients at banner university medical center who required surgical treatment for pop from to . patients were divided into two groups: sslf surgery and any other pop surgery. data was obtained from patient charts in epic electronic medical records. summary of results patients were categorized into groups: sslf procedure group (n= ) and other pop surgery group (n= ). women with sslf procedures were on average older ( . years old versus . years old) and more likely to be smokers ( . % versus . %) and dia- betics ( . % versus %) compared to the non-sslf group. among intraoperative outcomes, the group without sslf surgery had a higher proportion of vaginal hysterec- tomy ( . % versus . %) and urethral sling incontinence procedure ( . % versus . %). however, the sslf surgery group had a higher proportion of anterior repairs ( . % versus . %), posterior repairs ( . % versus . %), and vaginal apex suspensions ( . % versus . %). the largest difference was observed between the estimated blood loss in individuals with sslf surgery and abstract table patient demographics patient age cervicomental classification scale score dose in ml ( mg / ml) pain score adjunctive treatments . . cheek volume augmentation* . . fat grafting** . . none *patient underwent treatment with juvéderm voluma xc (allergan, ca usa) in the malar region three weeks prior to injection. **patient underwent autologous fat grafting to her mid-face five months prior to injection. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ those without sslf surgery ( . ± . ml versus . ± . ml). finally, for short-term outcomes data, the patients without sslf surgery had a shorter post-operative stay ( . ± . days versus . ± . days) and shorter cath- eter draining days ( . ± . days versus . ± . days). conclusions the short-term data indicated a longer post- operative length of stay, greater number of catheter drain- ing days, and greater blood loss in those women who underwent sslf surgery compared to those who under- went other pop surgeries. therefore, more data needs to be obtained to verify these results for future pop surgical management. do conversion total hip arthroplasty yield comparable results to primary total hip arthroplasty? g chin. university of california, irvine, daly city, ca . /jim-d- - . purpose of study increasing hip fracture incidence in the united states is leading to higher occurrences of total hip arthroplasty (tha) including primary tha, revision tha, and conversion tha for failed orif of the hip joint. in spite of studies showing higher complication rates in con- version tha, the centers for medicare & medicaid ser- vices currently bundle conversion and primary tha under the same diagnosis related grouping (drg). drg group- ings are used to determine reimbursements and perform- ance evaluations. we compared the cost of treatment, implant characteristics, and perioperative characteristics of conversion and primary tha. the purpose of this study is to determine the degree of difference between conversion and primary tha. our hypothesis is that conversion tha will have higher cost and resource utilization than primary tha. methods used fifty-one consecutive conversion tha patients (cpt ) and matched primary tha patients (cpt ) were included in this study. perioperative and implant characteristics for conversion tha and primary tha were compared using regression, chi-square, and anova analysis. the natural log trans- formed costs for conversion and primary tha were com- pared using regression analysis. conversion tha subgroups formed based on etiology were compared using anova analysis. age, gender, bmi, asa, charlson comorbidity score, and smoker status were controlled in the analysis. summary of results for perioperative and implant characteristics, conversion tha were determined to be sig- nificantly different (p< . ) in length of stay (los) ( . days longer), operative time ( . minutes longer), and odds of requiring revision type hardware (at least times more likely). conversion tha were also determined to be significantly different and greater than primary tha in the following costs: hospital operating direct cost ( . % greater), hospital operating total cost ( . % greater), direct hospital cost ( . % greater), and total hospital cost ( . % greater). conclusions based on greater los, operative time, odds of requiring revision type hardware, and cost of treatment, conversion thas have greater cost and resource utilization than primary thas. in order to prevent disincentives for treating these complex surgical patients, reclassification of conversion tha is needed as they do not fit together with primary tha. capitonnage for surgical treatment of pulmonary cystic echinococcosis: systematic review and meta-analysis c logan, p pottinger. university of washington school of medicine, seattle, wa . /jim-d- - . purpose of study cystic echinococcosis is a neglected zoo- notic disease that affects over one million people in pre- dominately rural populations of underdeveloped countries in africa, south america, southwest asia, and central asia. surgical management is most common for cysts in the lungs, but there is controversy surrounding which techni- ques are preferred. capitonnage is a widely used but criti- cized technique for closure of the residual cavity in lung parenchyma after pulmonary cyst removal. this review evaluated available literature for the efficacy of capiton- nage. methods used pubmed and pubmed clinical queries were searched for studies reporting the use of capitonnage, either alone or head-to-head with non-capitonnage, for the treatment of pulmonary cystic echinococcosis. case series, cohort studies, and randomized or non-randomized clinical trials were considered. summary of results sixteen studies published between – detailing surgical management of patients met criteria for inclusion. the studies included one rando- mized clinical trial, eleven retrospective cohort studies, three case series, and one prospective cohort study. four studies restricted their patient population to pediatrics, two to adults, and the remainder were a mix of children and adults. twelve studies compared capitonnage head-to-head with non-capitonnage. outcomes considered were duration of hospitalization ( ), morbidity ( ), and prolonged air leak ( ). most studies found capitonnage to be superior ( ), some found there to be no advantage ( ), and a few offered no opinion ( ). an evaluation of head-to-head studies found capitonnage superior to non-capitonnage for prolonged air leak (odds ratio= . , % ci, . – . , p< . , n= ), and total morbidity (odds ratio= . , % ci, . – . , p< . , n= ). conclusions this meta-analysis of available evidence sug- gests that post-operative outcomes associated with capiton- nage are as good or superior to those associated with non-capitonnage in most patients. there may be specific patient factors or long-term outcomes that favor non- capitonnage over capitonnage, but thus far they have not been elucidated. for now, this meta-analysis is the most up to date and comprehensive review of this question of which we are aware. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ behavior and development concurrent session : pm friday, january , capsassociations among mother-toddler play and development in preterm toddlers n moss, d novak, r rieger, j fuller, s erickson, jr lowe . university of new mexico, albuquerque, nm; university of new mexico hospital, albuquerque, nm . /jim-d- - . purpose of study preterm children are at risk for cogni- tive, language, and self-regulation delays. responsive, non- controlling parenting fosters the development of self- regulation, cognition, and behavior. we investigated the associations between parenting quality and neurocognitive outcomes in english and spanish speaking preterm and term toddlers. methods used this study included term and preterm toddlers ( – months) and their mothers. participants were english (n= ) and spanish (n= ) speaking. parental behavior was coded for videotaped play using the dyadic parent-child coding system that measures parent’s behaviors including commands, questions, praise, and statements. the bayley scales-iii measured child cogni- tive and language abilities and the snack delay tested child impulsivity. summary of results for preterm children, increased use of indirect commands (p= . ) and unlabeled praise (p= . ) positively correlated with cognitive scores. increased use of unlabeled praise was positively correlated with the snack delay (p< . ), and increased use of descriptive questions was positively correlated with the snack delay (p< . ). for the term children, increased use of descriptive questions was also positively correlated with the snack delay (p= . ). increased use of direct commands (p= . ), descriptive questions (p= . ), and reflective statements (p= . ) positively correlated with language scores. increased use of descriptive questions was positively correlated with cognitive scores (p= . ). finally, increased use of information questions positively correlated with the snack delay (p= . ). for english speaking children, descriptive questions (p= . ) and reflective statements (p= . ) positively correlated with language scores; and descriptive questions (p= . ) posi- tively correlated with cognitive scores. descriptive ques- tions (p= . ) and information questions (p= . ) positively correlated with the snack delay. conclusions different types of parent verbal behaviors correlated with cognition, language, and impulsivity for preterm compared to term toddlers. parent behaviors cor- related with testing scores only for english speaking chil- dren, due to small spanish speaking subsample. this has implications for parental education in early intervention programs. exploring sex differences in autism spectrum disorders using the charge study m white, k angkustsiri, d tancredi, r hansen. uc davis, sacramento, ca . /jim-d- - . purpose of study autism spectrum disorders are much more prevalent in males when compared to females. in , the cdc estimated that males with autism outnum- bered females with the disorder . times to . many the- ories have emerged as to why this is, including the protective effect of the additional x chromosome in females, the potential deleterious effect of the y chromo- some in males, hormone mediated pathways that are influ- enced by the environment, among many others. a recent review article found that females with autism are more likely to have intellectual disability and seizure disorders. males may exhibit more severe restricted/repetitive beha- viors. understanding the phenotypic differences between males and females may allow insight into the etiology of autism spectrum disorders. once this is better understood, sex specific diagnostic and treatment pathways may be developed. methods used the childhood autism risks from genetics and the environment (charge) study is a population-based case-control study that is ongoing at the uc davis mind (medical investigations of neurodevelopmental disorders) institute. starting in , participants with autism spectrum disorders and develop- mental delay were recruited to participate. age and loca- tion matched typically developing controls are then selected at random. children must be age – years, have been born in california, speak english or spanish and live with at least one biological parent. the visit includes a comprehensive medical history, physical exam, epidemiolo- gic information regarding in utero and early life exposures, blood draw, parental assessment of the child’s behavior and adaptive skills, as well as developmental functioning and autism severity (if applicable). males and females with autism from the charge study will be compared to examine differences in development (mullen scales of early learning), behavior (aberrant behavior checklist and vineland adaptive behavior scales) and autism severity (autism diagnostic observation schedule). i plan to correct for age, socioeconomic status, time in treatment and cognitive functioning (for ados severity score). summary of results preliminary results will be presented at the meeting. conclusions preliminary results will be presented at the meeting. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ what might explain social impairments in children with chromosome q . deletion syndrome? k angkustsiri, , i leckliter, , tj simon , . uc davis medical center, sacramento, ca; uc davis mind institute, sacramento, ca; uc davis medical center, sacramento, ca . /jim-d- - . purpose of study autism spectrum disorders (asd) are frequently reported in children with chromosome q . deletion syndrome ( q), although no studies have used gold-standard evaluations to diagnose asd. it is unclear if the social impairments in q are better explained by underlying cognitive challenges. this study investigates whether specific cognitive abilities are related to the social impairments in q that frequently lead to asd diagnoses. methods used we performed a retrospective analysis of relevant data from children, collected as part of a study designed to study the neurocognitive bases of spatio- temporal impairments in children ages – with q. the social communication questionnaire (scq), a screening tool for autism, was used to quantify social impairments. these were related to subtest scores from the wechsler intelligence test for children, th edition (wisc-iv) to test our hypothesis that conceptual and linguistic delays contribute strongly to social impairments. pearson’s correl- ation coefficient was calculated to determine the strength of relationship between variables. summary of results mean age was . + . years. % were male. scq score correlated negatively with wisc-iv verbal comprehension index (vci; r=– . , p= . ) and wisc-iv vci subscales vocabulary (r=– . , p= . ) and comprehension (r=– . , p= . ), but not similarities (r= . , p= . ). however, perceptual reasoning (r=– . , p= . ) and processing speed (r=– . , p= . ) composites were not related to scq scores. conclusions in children with q, social impairments (as measured by the scq) were related to communication and language abilities but not other wisc-iv domains. this suggests a specific role for cognitive abilities underlying communication in partially explaining the level of social functioning in children with q. future study should compare a broad array of cognitive domains in q and idiopathic asd to determine whether distinct intermediate phenotypes explain observable behavior and thus provide different targets for treatment. the effects of animal assisted intervention on the social initiation behaviors of children with an autism spectrum disorder h albasha, m kelly, j andrews, s rice. the university of arizona college of medicine–tucson, oro valley, az . /jim-d- - . purpose of study animal assisted intervention (aai) is a therapy tool used to improve social behaviors in children with an autism spectrum disorder (asd). during aai therapy sessions children are encouraged to participate in activities with a pet therapy animal. there are few studies on aai therapy for asds, and these studies lack robust study designs, merely showing proof of concept and requir- ing further investigation. the following study investigates the effects of aai therapy sessions with a dog on social ini- tiation by children with asd. methods used six males and three females (ages – ) par- ticipated in the study – are verbal and are nonverbal and the average srs total score was . ( – ). each child attended one, -minute session per week for weeks. the children were randomly assigned to have their first weeks with the dog and the next with the human proxy, or vice versa. the proxy served as the control and participated in the activities without speaking. sessions were recorded with consent. during the sessions, a facilitator instructed the child through a series of play activities, with a minimum of two minutes and a maximum of minutes for each. the instances of when the child initiated a social interaction with the facilitator or parent through starting a conversa- tion or physical touch (si) were tallied by an in-person and video coder. we used repeated measures anova to deter- mine the differences in si over the weeks with the dogs and without the dogs. summary of results there was a main effect of time on si, f( , )= . p<. with si toward parent or facilita- tor reducing over the weeks. there was no significant effect of dog/proxy or an interaction effect between inter- vention and time; however the trend differed between the two groups with the proxy group decreasing from to and the dog group from to si events. conclusions the decline in the instances of si toward the facilitator or parent was surprising and may be the result of increased si with the dog or proxy, which we did not account for. further investigation should be performed with expanded measures accounting for social interactions and expressions between the children and dog or proxy. impact of erythropoiesis stimulating agents on behavioral measures in infants born preterm and term r rieger, ra yeo, s winter, j phillips, n moss, rk ohls, jr lowe . university of new mexico, albuquerque, nm; university of utah health care, salt lake city, ut; university of new mexico hospital, albuquerque, nm . /jim-d- - . purpose of study erythropoietin (epo) receptors are present in the brain of the developing fetus, which may explain the benefit it has for the premature brain. as chil- dren born preterm are at-risk for difficulties in academic achievement, behavior and executive functioning. erythropoiesis stimulating agents (esas) may prove benefi- cial to development. methods used preterm infants born – grams were randomized to receive epo or darbe (esas group n= ). preterm placebo (n= ) and term group (n= ) were recruited. children were evaluated at to years with intelligence testing and parents completed the behavioral assessment scale of children scale (basc-ii). j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ summary of results demographic variables were grouped into factors: socioeconomic status (ses; maternal educa- tion, ethnicity, income) and stress (number of children under in the home and number of family moves). using multivariate modeling, with all three groups, the effect of group was significant (f( , )= . , p< . ), as was the effect for ses (f( , )= . , p= . ) and the inter- action of group with ses (f( , )= . . p= . ). the same multivariate model for esas and placebo resulted in a significant effect of ses (f( , )= . , p= . ), and interaction of ses with group (f( , )= . , p= . ). at a univariate level, the interaction was significant for adaptive skills (p= . ), behavior symptoms (p< . ), and externalizing problems (p= . ). conclusions preterm children treated with esas per- formed significantly better on basc-ii variables compared to preterm children with no treatment, most notably on the adaptive skills, behavior symptoms, and externalizing problems composites. overall, esas seemed to “protect” children born preterm from the adverse impact of low socioeconomic status on behavioral functioning. children treated with esas were more similar to the term group on ses factors than the placebo group, indicating that esas mediated the impact of socioeconomic variables on preterm children. these findings have implications for future use of esas as part of medical treatment of children born preterm. developmental milestones booklets aid in early diagnosis/intervention p kaluzhny, s lee. unsom, las vegas, nv . /jim-d- - . purpose of study the cdc spends a significant amount of money yearly to make the “milestone moments” book- lets. to date, there has not been a study that shows whether or not these booklets are helpful to parents. this study aims to investigate the utility of these booklets in helping parents identify possible developmental delays in their children, which could lead to earlier diagnosis and intervention. methods used cdc booklets are given to parents during a lied clinic visit. a pediatric resident explains the book- let’s contents, confirms comprehension with parents, and parents complete a signature form indicating the date the family received the booklet. at , , and months parents are asked to fill out an age appropriate question- naire targeted at each area of development (motor, lan- guage, social) and complete a survey about the usefulness of the booklet. signature forms and questionnaires are col- lected and tracked. summary of results currently our clinics have given out books with completed signature forms. / patients have completed forms for age appropriate visits. / are month visit, / are month visit, / are month visit, / are month visit. one patient has completed both and month visit follow-up forms and has found the booklet useful. the remaining patients have not returned for / / / month visit. of those parents who completed a follow-up form after receiving a booklet at an earlier visit, % ( / ) indicated that they used the booklet and found it useful while % ( / ) did not use the book and therefore did not find it useful. % ( / ) of respondents who found it useful are parenting their first child; % ( / ) have parenting experience; % ( / ) of respondents did not indicate parenting experience. of the four respondents who did not use the booklet, partici- pants did not respond regarding prior parenting experi- ence. conclusions while data collection is still in progress as patients complete follow up visits, those who have com- pleted surveys and utilized the book feel that it is helpful. it also seems to be more beneficial for first time parents, though conclusions are hard to make when sibling status is not known for all respondents. preliminary findings indi- cate that the “milestone moments” booklet is an important resource to provide to parents with a particular emphasis for first time parents. adherence to a depressive disorders clinical pathway is associated with longer length of stay b lifland, a desai, , d wright, r mangione-smith, , k schloredt . university of washington school of medicine, seattle, wa; seattle children’s hospital, seattle, wa; university of washington, seattle, wa . /jim-d- - . purpose of study clinical pathways are used in the inpatient setting to improve the efficiency of care and reduce costs. evidence regarding the effectiveness of inpatient psychiatric clinical pathways is scarce. the object- ive of this study was to examine the association between level of adherence to an adolescent depressive disorders clinical pathway and length of stay (los), cost, and read- missions. methods used retrospective cohort study of patients – years old placed on the adolescent depressive disorders clinical pathway at seattle children’s hospital from / – / . seven pathway processes of care were tracked by psychiatric unit staff and recorded in an internal database. an adherence score ( – scale) was generated for each patient by computing the sum of completed pro- cesses of care divided by the number of processes for which a patient was eligible. patients were categorized as follows based on their adherence score: low=< (n= ), medium= – (n= ), high= (n= ). we used multivariable linear and logistic regression models to examine the association between adherence category and ( ) los (≤ days versus > days), ( ) cost adjusted for los, ( ) -day return emergency department (ed) visits ( / ), and ( ) -day readmissions ( / ). models were adjusted for patient gender, level of medical complexity, and insurance status. summary of results the mean adherence score was . (sd= . ). patients in the highest adherence category had a higher odds of having a los > days (or . , % ci . , . ); however, there was no significant difference in costs adjusted for los between categories. additionally, there were no significant differences in -day return ed j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ visits or readmissions between categories. conclusions higher adherence to an adolescent depressive disorders clinical pathway was associated with longer los, which is likely a reflection of the time needed to complete all of the recommended processes of care. further research is needed to improve the efficiency of inpatient care for adolescent patients admitted for depressive disorders and understand the effectiveness of these pathways for improv- ing patient outcomes. parental perceptions about exercise and adhd sc cohen, s taylor, r rashedi, a ramakrishnan, r hansen, j schweitzer . uc davis mind institute, sacramento, ca; uc davis, sacramento, ca; uc davis, davis, ca; uc davis mind institute, sacramento, ca . /jim-d- - . purpose of study there is emerging evidence that exer- cise, including yoga, helps decrease adhd symptoms in children, but we do not know which types of exercise parents perceive as the most beneficial and if parents are open to having their children participate in yoga. the purpose of this study is to survey parents about their per- ceptions regarding the effects of exercise on their children’s adhd symptoms, and evaluate parental receptiveness to yoga as a form of exercise for children with adhd. through this study we hope to learn which types of exer- cise children with adhd are most likely to participate in, and look for trends in the types of exercise that parents perceive as the most beneficial for their children’s adhd symptoms. methods used parents of children – years of age with adhd are being recruited to participate in this study, which involves completing an online survey, via redcap (research electronic data capture), consisting of ques- tions with sub-questions to elicit parent responses regarding effects of different types of exercise on their children’s adhd symptoms. study subjects are recruited from the uc davis mind institute subject tracking system (sts) database which has subjects with an adhd willing to be contacted. additional subjects are being recruited by fliers in pediatric waiting rooms, as well as online via the chadd newsletter, uc davis adhd facebook group, and mind institute website. the redcap survey link on emails, fliers and web posts direct participants to the informed consent and survey through redcap. survey data will be analyzed to estimate proportions, such as the proportion of children with adhd reported to have improved behavioral responses after various types of exer- cise as well as the proportion of parents willing to consider yoga as an adhd intervention. with a sample size of to , proportions can be estimated with a margin of error of no greater than . to . , which provides suffi- cient precision to characterize the responses elicited through the survey. summary of results preliminary study results will be ana- lyzed and presented at the meeting. conclusions preliminary study conclusions will be pre- sented at the meeting. community health ii concurrent session : pm friday, january , a progressive and innovative approach to increase the variety of resident exposure to underserved communities su das, m hogan, d simangan, e guenechea . university of nevada school of medicine, las vegas, nv; reach, las vegas, nv . /jim-d- - . purpose of study to describe an innovative method which one training program implemented to increase the variety of resident exposure to low income and underserved com- munities. this exposure was targeted to improve residents’ understanding of issues surrounding medical care for underserved patients. methods used the pediatric residency program leadership took several measures to increase the exposure of residents to the underserved community. the first step was to reach an understanding with our community. reach, associated with the ventanilla de salud, is an organization whose mission is providing medical education and linkage to medical care of the underserved hispanic population in our community.the second step was to reconfigure the “community” and “underserved” rotations to incorporate new experiences. trainees were asked to do bi-monthly home visits in the underserved segment of our community with “promotores” who are a group of very committed, highly skilled health educators and community leaders trained by reach.advertisements were placed at the ventanilla de salud by reach announcing a monthly trainee provided education topic for a large group format. summary of results residents have been exposed to the underserved community in a manner which is mutually beneficial. residents are doing basic health assessment of underserved patients at home visits and in a large group format at the ventanilla de salud. they are referring patient to clinics as needed and providing counseling. they are also doing home safety assessment and providing coun- seling. they are receiving first hand exposure to the living conditions of the underserved population, enhancing their ability to provide empathic and achievable healthcare. resident feedback about this exposure has been extremely positive. promotores input has also been supportive with mutually beneficial recommendations to improve the resi- dent experience by encouraging residents to be proactive educators during home visits. conclusions resident exposure to low income and under- served population has been established in a manner which is highly rewarding for both residents and the community. this was possible due to a well- organized systematic approach involving community collaboration. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ before it’s too late ⇒ vaccinate: school based vaccination clinic in conrad, mt js kranseler. university of washington school of medicine, seattle, wa . /jim-d- - . purpose of study this project aims to increase vaccin- ation coverage rates in conrad, mt through student and parent education in conjunction with a school-based clinic. conrad (pop , ) is the county seat of pondera county, located in central montana. pondera county’s vaccination rates are below state and national averages, particularly for varicella, hpv & mcv vaccines. additionally, there are no school nurses in the region, so compliance monitoring of student immunization records is poor. as of october , montana will be the th state to require pertussis and two varicella vaccinations for school entry. methods used discussions about health issues and com- munity needs with the pondera county health department (pchd) health nurse revealed that access and education about vaccinations are insufficient. many students, parents and healthcare providers agreed that these were the biggest challenges to increasing vaccination rates. a literature review of immunization strategies in rural areas demonstrated that providing vaccines outside the traditional medical home, specifically in schools, is the most effective way to increase immunization rates. combining student and parent education to encourage support of school-based vaccination clinics and increase knowledge about vaccines is needed as well. meetings were organized with the conrad hs principal to help form a partnership with the pchd and to address the need for vaccination education. additionally, care van, a bluecross blueshield service, was contacted to ensure coverage of the vaccination costs for un/underinsured students. summary of results through the coordination of the pchd, conrad hs & care van, a vaccination clinic will be piloted at conrad high school on / / . an action plan was created to manage the deliverables needed to initi- ate this intervention. an education curriculum was designed for students and provided to the partners. a packet was developed for parents including the creation of: vaccination timelines, consent forms, and insurance/billing forms. conclusions this intervention will increase vaccination knowledge and provide an accessible solution. montana tracks immunization data in the immtrax system and pchd can track coverage rates after the clinic to demon- strate program efficacy. long-term, this program will serve as a model for other schools in pondera county and nearby counties. ecouraging early literacy in the swinomish indian tribal community through reach out and read lc thornquist. university of washington, seattle, wa . /jim-d- - . purpose of study this project aims to foster positive atti- tudes about shared reading, improve book ownership, and improve early literacy skills among young patients at the swinomish indian health clinic. the clinic serves residents of the local swinomish tribe and members of other feder- ally recognized tribes. based on conversations with the pro- viders in the clinic and observations made in appointments, some parents in this community have limited preparation for or experience with a home environment that supports early literacy. methods used to address this issue, an evidence-based intervention (reach out and read) appropriate for this setting was researched, identified, and proposed to the clinic. a community partner (la conner regional library) was identified and a proposal for a long-term mutual rela- tionship was developed. a plan to advertise the new program to the community was also developed. summary of results the application for ror was com- pleted, submitted, and is now under review by the washington ror director. sustaining funding for ror was secured through the clinic itself. training will begin for pediatric providers next week, and a site visit by the ror logistics liaison will be scheduled once training is complete. a community partnership with the la conner library has been forged, and donations collected. an article about the benefits of early reading, details of the new ror program, and an invitation to la conner library story time will appear in qyuuks, the tribal newsletter. a basket of nearly donated children’s books is now in the waiting room. a flash drive with passwords, ror contacts, la conner library contacts, collected research, and digital copies of all documents generated for the project will be left at the clinic. conclusions the next steps for ror at swinomish are to finish required training, schedule an ror site coordinator visit, and purchase books. provider and staff support for the program is strong, as was patient response to the pro- posal. last year, qualifying pediatric patients were seen, with nearly well-child visits in which to imple- ment ror. similar or greater numbers are projected for this upcoming year. ror swinomish is expected to start in full by early september. increasing infant vaccination rates in park county, montana by prenatal vaccination education a seeley. university of washington school of medicine, kirkland, wa . /jim-d- - . purpose of study to increase vaccination rates for infants in park county, mt by educating parents on vaccine safety by means of a prenatal class and a binder given to expect- ant mothers at their first prenatal visit. % of children in mt and % of children in park county have not received all of the recommended vaccinations. according to the local public health nurse, one reason rates are low in park county is the lack of vaccine education among parents. currently, in livingston healthcare, the first time that vac- cinations are discussed is during their child’s -month well check. this is the ideal time to begin vaccinations and does j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ not give parents time to research and understand them. methods used research from a literature review of primary sources led to the conclusion that parent education of vaccine safety before the pediatric visit with vaccinations can increase vaccination rates. sharing this research with the obstetrics physician in livingston who leads a prenatal class series at the community health center, a short presen- tation was added to the current prenatal classes about vaccine safety and importance. in order to educate the maximum number of mothers, vaccination information was also added to a prenatal binder that all mothers receive during their first prenatal visit in livingston. summary of results in collaboration with the ob phys- ician leading the prenatal class, education focused on the vaccine schedule and clarifying safety myths about ingredi- ents, immune system harm, and the link with autism. the parents receiving the education described themselves as being more informed about immunizations and felt more comfortable making a decision regarding whether or not to vaccinate their child. conclusions the project was successful, in that parents were appreciative of the information and felt more informed and comfortable making vaccination decisions regarding their child. the clinic will continue to include vaccine information in its prenatal binder and classes. the education of parents in livingston will, hopefully, lead to an increase in vaccination rates. from the literature reviewed, vaccine education can be beneficial both before and after birth, but should occur before vaccinations begin. this education should focus on clarifying myths about vac- cination safety, as that is a main reason parents do not vac- cinate their children. ‘no smoking’ signs in the city parks of ephrata, washington de marriott. university of washington school of medicine, seattle, wa . /jim-d- - . purpose of study ephrata is a rural town in central washington state with a large youth population: % under the age of compared to the state’s %. although the % adult smoking rate in ephrata is the same as the state’s, healthy people proposes a goal of %. additionally, % of high-school seniors in ephrata report smoking in the last -days (compared to . % in wa). ‘no smoking’ signs in city parks contributes to a comprehensive tobacco control program. reducing second-hand smoke exposure to park goers, combating youth/adult smoking rates and altering the social norms regarding smoking are all important and feasible goals. methods used meetings were held with a public health nurse from the grant county health district (gchd) and the ephrata parks and recreation director. it was decided that of the currently pending projects, a smoke-free parks policy was the most tangible to research and pursue. a review of literature was commissioned to evaluate the cost and efficacy of the project. the research revealed that smoking bans in parks effectively reduces the number of smokers in parks. it also confirmed the legitimate health concerns of second-hand smoke in outdoor settings. the costs were determined to be low with minimal enforcement required. other proven effects from a smoke-free parks policy include positive behavior changes in current smokers and changes in citizens’ perceived social norms regarding smoking. summary of results the review of literature was pre- sented to the gchd and the parks and recreation department. additional supporting documents were requested and submitted: photographs of other municipal- ity’s outdoor smoking signs and stakeholder interviews of impacted parties. the delivered materials will be used in a presentation to the city council to obtain funding approval, generate ideas for signage as well as prompt a discussion about legislation creation. conclusions installation of ‘no smoking’ signs in ephrata parks is an effective proposal because of its current accept- ance and readiness to be acted upon by community part- ners. the funding and staff required for sign creation/ installation are already available making the implementa- tion very likely. a challenge is the city’s hesitancy to pass legislation to enforce the signage; it is unclear if an un-enforceable smoking policy will have the desired impact. quality improvement intervention to improve annual papanicolaou smear rates among human immunodeficiency virus-infected women v ganta, d patel, s moonie, a hunt, j richardson, d di john, e ezeanolue . univ. of nevada school of medicine, las vegas, nv; university medical center, las vegas, nv; univ. of nevada las vegas, las vegas, nv . /jim-d- - . purpose of study current guidelines recommend annual papanicolaou (pap) smears for human immunodeficiency virus (hiv)-infected women for cervical cancer screening. rates for such screening in nevada are below the national rate. we postulated that reminders to hiv-infected adult women by text or phone messages could improve rates of annual pap smear screening. methods used we identified a cohort of hiv-infected adult women at an outpatient center affiliated with university medical center (umc). approval was obtained from the umc institutional review board. demographic and hiv care-related data were obtained from medical records. review of records showed that women had obtained a pap smear in the past year. a questionnaire pre- viously administered to the cohort identified a need for reminders in scheduling a pap smear. we undertook a quality improvement intervention from june - sept. , in which reminders to schedule a pap smear were sent to the remaining cohort of women, first via sequential text messages, followed by attempts at phone calls. an incentive of a ten-dollar gift card was offered for those who obtained a pap smear. reports of completed pap smears after the intervention were tabulated on a weekly basis. data were analyzed using mcnemar’s test for mar- ginal homogeneity. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ summary of results among our cohort of hiv-infected women (average age: . years; race/ethni- city: . % african-american, . % white, . % hispanic), / ( . %) had an hiv viral load< copies/ml, / ( . %) had cd counts > /mm , and / ( . %) were receiving anti-retroviral therapy. there was an increase in the rate of completed pap smears from . % at baseline to . % ( / ) after intervention (p< . ). of all pap smear results, ( . %) were abnormal. conclusions rates for annual pap smears continue to be low in nevada and in the united states, especially among hiv-infected women. the need for reminders has been identified as a barrier to fulfilling this recommendation. our intervention, utilizing methods of communication like text messaging and phone calls, markedly increased the rate of completed pap smear screening in our population. addiction before birth: drug abuse during pregnancy rc braunberger. university of washington school of medicine, seattle, wa . /jim-d- - . purpose of study this project aims to raise community awareness of neonatal abstinence syndrome (nas) to show those dealing with drug abuse during pregnancy that they are not alone; and that help is available before, during, and after pregnancy. st. joseph hospital (sjh) is located in polson, montana on the confederated salish and kootenai reservation. the community of lake county (lc) is dealing with an increase in drug abuse. a recent article stated that % of recent vacant housing tested posi- tive for methamphetamines. the percentage of infants born at sjh with exposure to licit and illicit drugs is over % the national average, and shows the need to raise awareness. the national average of nas births in was . %, compared to % in the first quarter of locally. nas infants have increased risks including birth defects, seizures, and bipolar disorders. methods used clinical observation showed an increased number of infants with exposures to licit and illicit drugs listed in their medical histories. meetings with the director of nursing, lc health department, ob nursing staff, and physicians showed the large scale of the problem in lc. a literature review showed how storytelling was used in latino and native american populations to address health concerns. research also showed the effectiveness of story- telling in addiction, utilized heavily by alcoholics anonymous. following meetings with the staff, a partner- ship was made with best beginnings (bb) of lc. summary of results a facebook (fb) page was created linking an anonymous survey to collect and share personal stories from those affected by nas. a flyer was created using one of the stories, and distributed at the county health department, wic offices, and sjh. the bb program was given control over the fb page and survey to continue to gather stories for a future larger work containing mul- tiple stories. a presentation was given to the staff at a neighboring hospital about the project, and to increase the network for story gathering. conclusions this project had an initial challenge gather- ing stories. the creation of a survey allowing anonymous submissions removed this initial hurdle. this project is going to be continued by bb of lc in the hope of estab- lishing future support groups, and a larger collection of stories. the effectiveness of the project depends on the usage of the materials, and the ability to establish support groups. sexual health awareness course at fort peck community college: peer-education, prevention, and treatment of sexually transmitted infections sf colvin. university of washington school of medicine, seattle, wa . /jim-d- - . purpose of study the sexual health awareness course developed at fork peck community college (fpcc) aims to reduce the prevalence and incidence of sexually trans- mitted infections (sti’s) in roosevelt county (rc), montana. rc has a population of over , people with the second highest rate of gonorrhea in montana at / , . public health officials are concerned about the rise in gonorrhea, as well as the potential increase of other sti rates. there is a community need for a sustain- able source of sexual health information and treatment options. methods used initial conversations were held with the roosevelt county health department (rchd). the director of the fpcc wellness center presented the idea of a sexual health awareness course offered at fpcc with college students having a primary role in community out- reach initiatives. a literature review was conducted for studies with community college students as peer-educators for stis. as the population of rc is % american indian (ai), a focus was placed on studies with both rural and ai perspectives. a rural, -week peer-educator training program demonstrated a % self-efficacy increase in condom use, and a % decrease in unprotected inter- course. sti education at an ai basketball camp reduced the potential of risky sexual behavior up to months. other studies of ai populations noted the benefits of media tech- nologies of obtaining sexual health information. summary of results the fpcc wellness center director helped develop a course outline, approved informally by the fpcc president, and the vp of student affairs for formal approval. the proposal includes the following topics: epidemiology of common stis; psychological and cultural-specific focus groups; a peer-education model for public school outreach; mobile screening & treatment units; and media technology interventions. the course will initially be offered in the fall semester. conclusions the development of the sexual health awareness course at fpcc has broad initial support for its successful implementation at fpcc. the rchd will also introduce the course to the rc epidemiology team. risky sexual behaviors are also heavily interrelated to other issues in rc, including drug and alcohol abuse, which are signifi- cantly higher than the state average. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ comparing the educational outcome of underrepresented in medicine (urm) and non-urm student participants in a health enrichment program n rezakahn khajeh, mj vennat, b afghani , . university of california, irvine, irvine, ca; choc hospital, orange, ca . /jim-d- - . purpose of study the purpose of this follow-up study is to compare the educational outcome of the urm and non-urm participants of the high school students who participated in the health and science enrichment program at uc irvine school of medicine. methods used the university of california, irvine school of medicine implemented the summer premedical program in . the program allows high school students to com- plete workshops that are not typically accessible until medical school while also providing a unique exposure to medical education. – % of students enrolled in the program are urm and receive scholarship funds for program completion. all urm and non-urm students who have completed the program between and were contacted to obtain their educational outcome. summary of results of high school students who participated in our program between and , ( %) responded. of respondents, ( %) were urm and ( %) were non-urm. ( %) of urm and ( %) of non-urm were still attending high school at the time of our follow-up. of urm and non-urm who completed high school, ( %) and ( %) were enrolled in a college. the breakdown of col- leges is shown in the table. conclusions enrollment in uc schools had the least percent difference ( . %) between urm and non-urm students. ivy league and junior college enrollment had the highest percent differences ( . % and . %, respectively). non-urm students had over three times more enrollments in ivy league schools than urm stu- dents. urm students had over fifteen times more enroll- ments in junior colleges than non-urm students. in conclusion, while both categories possessed higher educa- tional pursuits, non-urm students had more enrollments in prestigious private colleges while urm students had more enrollments in junior colleges. an exchange for health: implementing a syringe exchange program in browning, mt jl ebner. university of washington, seattle, wa . /jim-d- - . purpose of study the goal of starting a syringe exchange program (sep) in browning, mt is to reduce transmission of hepatitis c virus (hcv) and prevent human immunodeficiency virus (hiv) among people who inject drugs (pwid). browning is the largest community on the blackfeet reservation and the seat of tribal government. browning is located in glacier county which has a popula- tion that is . % american indian/alaskan native (ai/ an). in , the rate of chronic hepatitis c cases reported in glacier county was / , , more than times the rate for montana. however, hiv rates in glacier county and montana are low. methods used through community conversations and clinical observation the hcv frequency among pwid in browning became apparent. a group was already meeting with interest in starting a sep. this group, termed the blackfeet action committee (bac), consisted of staff from the hospital, the local rehab program, community health representatives, and tribal health. after a meeting with bac, a literature review was conducted to evaluate the effectiveness of seps in reducing hcv and hiv transmis- sion. this revealed that seps are evidence based interven- tions for decreasing injection risk behavior and in some studies sep presence correlated with reductions in hcv and hiv transmission rates. summary of results established seps, were contacted for support and information. a facebook page was created to announce information about time and place the sep will occur. supporting documents were made including: an intake form, a system for monitoring syringes out/in per client, and a handout to provide basic information about syringe safety, hcv and hiv, overdose prevention, and syringe disposal. also, flyers advertising for the exchange were made and given out during a local parade. research was conducted on funding options for the sep. all research results and documents were presented to bac at a meeting or by email. conclusions the strong community involvement is a promising indication for the future success of a sep. the biggest challenge that exists will be building trust with and establishing a sense of confidentiality for pwid, which may take time. however, this is a meaningful project because there are few options available to rural reservations for distributing clean syringes. the next steps for bac will be to apply for funding and to develop a protocol for the sep. abstract table breakdown of colleges colleges attending urm (n= ) non-urm (n= ) p value uc . % . % . ivy league . % . % . top . % . % . cal state . % . % . year college . % . % . other . % . % n/a “top ” was obtained from usa news’ nationwide university ranking. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ health care research ii concurrent session : pm friday, january , patient written notes and their use in primary care: “i felt like i was able to be heard” mo anderson, s jackson, n oster, s peacock, j elmore. university of washington school of medicine, missoula, mt . /jim-d- - . purpose of study setting agendas at the beginning of a clinic visit is recommended, but can be challenging in primary care. we assessed the feasibility, acceptability, and utility of having patients type their own visit agendas in an outpatient clinical setting. methods used we recruited patients from a large aca- demic teaching clinic at harborview medical center, a safety-net county hospital in seattle, wa. participating patients typed their own visit agenda into their electronic medical record before being seen by their physician (e.g., a list of questions and/or concerns they wanted to address with their physician). patients and providers were surveyed after the clinic visit to assess their perceptions of the patient-typed agenda and patient-provider communication. summary of results patients of primary care pro- viders typed an agenda and completed the survey. the response rate was . % of invited and eligible patients(e. g., english speaking and able to read and type on a com- puter). agendas averaged words in length (range to ) taking less than minutes to type. using a -point likert scale, the majority of providers ( %) and patients ( %) agreed or strongly agreed that the patient-typed agendas improved the provider’s understanding of the patient’s priorities for the visit. providers were significantly more likely than patients to agree that patient-typed agendas helped prioritize the visit ( % vs %, p<. ) and a desire to use them in the future ( % vs. %, p<. ). compared to providers, patients were more likely to report that the provider seemed more prepared because of the patient agenda ( % vs %) and made the visits as more efficient ( % vs %, p <. ). providers ( %) and patients ( %) were equally likely to report improved patient-provider communication. qualitative review of survey comments supported these findings. conclusions patients from a safety-net population demon- strated a willingness and ability to type their own agendas before clinic visits into the electronic health records. both patients and providers agreed that patient-typed agendas improved patient-provider communication during visits. enabling patients to type visit agendas may enhance care by engaging the patient and giving providers a useful and efficient way to prioritize patients’ concerns. provider/staff perceptions of online portal barriers and benefits in a safety net setting m shah, l tieu, cr lyles . western university of health sciences, pomona, ca; university of california, san francisco, san francisco, ca . /jim-d- - . purpose of study online health portals, which provide patients access to personal health records, have been shown to improve overall health outcomes, and are increasingly becoming adopted across health systems. while a large amount of research has been conducted on patient barriers to portal use, little research has been done on provider per- ceptions, especially in safety-net settings where there are a high number of competing demands. this study examined providers’ beliefs about the barriers and benefits to portal use in the sf health network. methods used in january , we conducted a -question online survey with primary care providers (pcps) and non-medical provider staff. the survey focused on perceived barriers and benefits to portal use. in add- ition, providers and staff were asked for their age, gender, specialty/role, practice setting, and previous experience with patient portals. it included both closed-ended ques- tions to assess the prevalence of specific barriers/facilitators to portal use as well as open-ended questions to openly assess perceptions. summary of results a total of recipients responded to the survey. were physicians, were other healthcare providers, and were other staff. when asked about portal use among their patient population, providers listed major barriers of english proficiency and access to technol- ogy, and the most important benefit of increased access to pcp. however, in regards to their own work, providers/ staff felt the biggest barrier was lack of time in a workday to manage patient portals, answer secure messages, and teach patients how to use the portal. conclusions pcps in a safety net setting reported more barriers than benefits to patient portal use before portal implementation. overall, the concerns centered on english proficiency, lack of internet access, and lack of provider time. as portals improve and become ubiquitous, pcps have the potential to facilitate patient-provider communica- tion and increase patient engagement. however, our find- ings suggest that pcps, particularly those working in safety net settings, may need additional support in using portal websites within their existing workflows. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ listening beyond auscultating: a quality initiative to improve hcahps communication scores an schneider, e asher, jr cartwright, jl chow, ed lee, m nordstrom, md schwarz, m zarin-pass, l mazotti, , ns riegels , . university of california, san francisco, san francisco, ca; kaiser permanente medical center, oakland, ca . /jim-d- - . purpose of study use of the plan-do-study-act (pdsa) model to test interventions that could enhance patients’ perception of listening by physicians as measured by the hospital consumer assessment of healthcare providers and systems survey (hcahps). methods used eight third-year medical students con- ducted a literature review of communication strategies and observed hospitalists’ bedside interactions at kaiser oakland medical center. factors with potential to affect patients’ perceptions of physician listening yielded potential interventions – were tested and selected for a larger pilot based on feasibility and perceived impact. qualitative feedback produced one top intervention: use of an open-ended question to solicit a specific patient concern. a reminder was embedded in the hospitalist pro- gress note template in the electronic health record (ehr), modifying the traditional soap (subjective, objective, assessment, plan) to “scoap,” with the “c” designating patient concerns. a -day pilot was assessed by chart review and interviews. summary of results of the interventions tested, the open-ended question had the greatest participation and per- ceived impact. hospitalists’ feedback indicated that eliciting patient concerns yielded relevant information and that the ehr prompt was helpful. of eligible charts in the scoap pilot, % included documentation of patient con- cerns, most commonly pain and discharge planning. the hospitalist group has since formally adopted the scoap template. conclusions the pdsa method allowed for testing of interventions to improve patients’ perceptions of physician listening and refinement of one intervention, which was implemented by a large medicine service. studies suggest such patient-centered approaches can increase satisfaction without compromising efficiency. further, addressing a spe- cific concern can help shift an encounter from being task-oriented to care-oriented. the structured scoap reminder in the ehr facilitated behavioral change without being overly burdensome. correlation with hcahps scores may elucidate the impact of the scoap note on patients’ satisfaction. prevalence of hot thyroid nodules suspicious for malignancy d chang, s lippman, , a semrad, a swislocki , . vanchcs, martinez, ca; uc davis school of medicinie, sacramento, ca . /jim-d- - . purpose of study to estimate the prevalence of thyroid nodules suspicious for malignancy in hyperthyroid patients. while contemporary guidelines emphasize that “hot,” or toxic nodules are unlikely to be malignant, case reports suggest that these nodules may be malignant in a small, but not insignificant number of individuals. the prevalence of malignancy in “hot nodules” is unknown. methods used this retrospective study analyzed data from the va northern california health care system for patients enrolled between january and december . veterans were identified by icd- codes for hyper- thyroidism, and either thyroid nodules, thyroiditis, thyroid adenoma, or goiter. veterans who underwent radioiodine or ultrasound thyroid scanning were identified. these records were subsequently reviewed manually for suspi- cious ultrasonographic findings (size, calcification, or geom- etry). summary of results veterans were identified by icd- coding. of these, had thyroid ultrasounds, and had radioiodine thyroid scans. there were patients that had both ultrasound and radioiodine thyroid scans of which . % were male and the average age was . . twenty-five had hyperthyroid nodules or areas on radioio- dine studies and had suspicious ultrasound scans (we excluded individuals with “cold” thyroid scans). had both and of these, underwent fine needle aspirate (fna) and is planned for fna. conclusions while most veterans identified as hyperthy- roid did not undergo imaging studies, of those who did, a remarkable number had heretofore unexpected ultrasonographically-suspicious nodules. this preliminary observation suggests that ultrasound scans, a noninvasive and relatively inexpensive diagnostic modality, may have a role in the evaluation of the hyperthyroid patient in identi- fying those who might benefit from fna. removing barriers to medication non-compliance: patients’ use of a drug price comparison website to reduce costs and improve adherence s orrange, m ivanova, s sambasivam . keck school of medicine of usc, los angeles, ca; massachusetts institute of technology, cambridge, ma . /jim-d- - . purpose of study increasing out-of-pocket medication costs is associated with a decrease in medication adherence. the inability to afford medications is the most stated reason by patients for medication non-adherence. rates of medication non-adherence have remained high in the last three decades and are expected to rise as the burden of chronic disease increases. however, price transparency, through websites such as goodrx, has improved. goodrx is an aggregator of medication cost information including cash prices, prices from pharmacy savings’ programs, and coupons. it allows users to compare prescription drug prices at pharmacies in their area by entering their zip codes and medication names. little is known about the effects of such online price transparency on medication adherence. this study exam- ines patients’ reasons for seeking medication prices on goodrx and assesses the impact of cost savings on medica- tion adherence. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ methods used our sample was survey respondents recruited from goodrx (www.goodrx.com). data were collected from a varied demographic group over a four day period in august-september . questions asked included, “did you find your prescription for less on goodrx?” and “are you more likely to fill your prescrip- tion after using goodrx?”. descriptive statistics were used to characterize survey responses. summary of results overall, people completed the survey. nearly % of the sample was years of age or older, with % having insurance. results showed that % of respondents found their prescription for less than they’d been paying, and those savings translated into more than % of respondents reporting increased likelihood of filling their prescription. the average savings across prescriptions was $ . per prescription. conclusions this study highlights the pressing need to find new ways to ensure lower out-of-pocket medication costs and presents a compelling argument for cost-savings websites. by providing medication cost transparency and significant savings, such sites may play an important role in promoting medication adherence. the impact of first responder turnout segment on survival from out-of-hospital cardiac arrest np deruyter, s husain, l yin, m olsufka, am mccoy, c maynard, la cobb, td rea, mr sayre . university of washington school of medicine, seattle, wa; king county emergency medical services, seattle, wa . /jim-d- - . purpose of study patients with out-of-hospital cardiac arrest (ohca) are more likely to survive when emergency medical services (ems) arrive quickly. the turnout segment (turnout) is between time at notification of an incident and when the assigned vehicle begins moving. a second turnout standard has been proposed. we hypothesize that as turnout increases, survival to hospital discharge from ohca decreases. methods used we retrospectively evaluated responses to adult non-traumatic ohca on ems arrival from to in an urban, fire department based system. turnout was calculated from the computerized time stamps for dis- patch activation until first responding fire personnel pressed the “en route” button on the mobile data terminal. we categorized turnout, in seconds, into two groups: – (short) and > (long). cases in each category were com- pared with ohca survival to hospital discharge. we used logistic regression modeling to ascertain whether turnout independently predicted ohca survival to discharge. summary of results of , treated ohca responses, ( %) were excluded, leaving , for analysis. the median turnout was seconds, and % were between and seconds. about % met the second stand- ard, and % were longer. turnout accounted for % of the interval from – – call receipt to fire personnel begin- ning chest compressions. turnout was shorter when initial dispatch indicated ohca ( ± vs. ± ; mean differ- ence , % ci – ) and when ohca occurred during the day vs. night ( ± vs. ± ; mean difference , % ci – ). turnout decreased from to ( ± vs. ± ; mean difference , % ci – ). no differences in survival to discharge, return of spontan- eous circulation, or finding an initial shockable rhythm were noted between the two turnout groups. logistic regression was unable to demonstrate a statistical relation- ship between turnout and ohca survival (p= . ). conclusions turnout segment represents about a sixth of the overall call-to-patient interval. a possible explanation for failure to detect an effect on long term survival is the relative consistency in turnout segment in this system. prospective cohort study of remote ear disease diagnosis using a smartphone otoscope mr lacourse, m whipple, , c hume, , jd scott, mg sardesai , . university of washington school of medicine, seattle, wa; university of washington, seattle, wa; university of washington, seattle, wa . /jim-d- - . purpose of study ear disorders result in over million office visits per year. smartphone attachments, like the cellscope ototm (cso), enable a video of the ear canal and tympanic membrane to be transmitted wirelessly to a remote physician for cost-effective diagnosis and treatment. the device has been shown to be effective for remote diag- nosis in a pediatric population and among emergency phy- sicians. this study aimed to determine whether the device could be used effectively in patients seeking otolaryngology evaluation. we hypothesized that at least % of clinic visits could be avoided with use of the device. methods used a prospective pilot study was conducted. voluntary english-speaking patient-caregiver pairs present- ing to an otolaryngology clinic were recruited. caregivers were trained on use of the device, and then performed videootoscopic examinations without assistance. cso videos were transmitted to a blinded physician for remote diagnosis. patients attended their scheduled office visit with a provider who recorded an independent diagnosis without access to the cso video. data on patient and caregiver experience as well as remote provider perception and comfort with diagnosis were collected. descriptive statistics were applied. summary of results videootoscopies were collected from ears from patient-care-giver pairs. caregivers found the device to be very user friendly, reporting a mean ease of use score of . / [ – ], and comfort . / [ – ]. patients reported low discomfort scores of . / [ – ]. remote providers found the image quality to be compar- able to clinic otoscopy equipment in . % of cases. they were comfortable making a diagnosis in . % of cases, and willing to initiate treatment in . % of cases. conclusions the cso appears to be an effective tool for remote diagnosis and treatment of ear conditions for many patients who might otherwise require travel to an otolaryn- gology clinic. the device has the potential to save signifi- cant time and travel expenses associated with medical visits. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ high-fluence light emitting diode-generated red light modulates key cellular characteristics of skin fibrosis in human skin fibroblasts a mamalis, e koo, j jagdeo. university of california, davis, sacramento, ca . /jim-d- - . purpose of study skin fibrosis, often referred to as scar- ring, is a significant international health problem, with an estimated incidence of greater than million persons per year world-wide. skin fibrosis is a disabling clinical problem with limited cost-effective, non-invasive thera- peutic modalities. the unifying hallmarks of skin fibrosis are increased collagen production, an increased number of fibroblasts, and increased migration. light-emitting diode red light (led-rl) may represent a potential safe, port- able, and cost-effective treatment for skin fibrosis. we pre- viously found that (led-rl) decreases the proliferation and migration speed of human skin fibroblasts. we hypothesized -nm led-rl may increase reactive oxygen species generation and decrease collagen produc- tion in human skin fibroblasts. methods used to test our hypothesis we irradiated human skin fibroblasts with commercially-available led-rl units (photomedex). to ensure the measured effects were due to led-rl alone, each led-rl treated sample was matched to a light-protected control sample subjected to the same environmental conditions. intracellular ros was measured with dihydrorhodamine by flow cytometry. we quantitated total collagen levels follow- ing led-rl irradiation using a picro-sirius red (psr) col- orimetric assay. we confirmed that led-rl reduces procollagen a production using western blot. summary of results led-rl at fluences of j/cm and j/cm resulted in a significant dose-dependent increase in intracellular ros for up to hours following irradi- ation. led-rl at fluences of j/cm and j/cm resulted in decreased collagen levels, as measured by psr, in a dose-dependent manner at -hours post-irradiation ( . % and . %, respectively, p< . ). furthermore, we found that j/cm and j/cm led-rl reduced production of procollagen a hours post-irradiation ( % and %, respectively) as measured by western blot. conclusions we conclude that led-rl increases ros production and decreases collagen production that is asso- ciated with fibrosis. we envision that our findings will serve as the foundation for future translational studies that con- tribute to the management of fibrotic skin disease. hematology and oncology ii concurrent session : pm friday, january , pretreatment clinical prognostic factors for brain metastases from breast cancer treated with gamma knife radiosurgery at roehrig, , ea ferrel, , d benincosa, b peressini, a mackay, cm lee , . university of washington, seattle, wa; cancer care northwest, spokane, wa; data works northwest, coeur d’alene, id; gamma knife of spokane, spokane, wa . /jim-d- - . purpose of study brain metastases significantly affects morbidity and mortality rates for patients with metastatic breast cancer. treatment for brain metastases lengthens sur- vival, and options such as stereotactic radiosurgery (srs) can increase survival to months or longer. this study retrospectively analyzes the prognostic factors for overall survival (os) for patients with one or multiple brain metas- tases from breast cancer treated with srs. methods used between december and may , patients with brain metastases from breast cancer were grouped by potential prognostic factors including age at diagnosis, kps score, number of brain metastases, and whether or not they received adjuvant treatments such as whole brain radiotherapy (wbrt) or surgical resection. survival rates were determined for all groups, and hazard ratios were calculated using univariate and multivariate ana- lyses to compare differences in os. summary of results median overall survival was . ± . months. univariate analysis of patients with a kps ≤ and multivariate analysis of kps – showed signifi- cantly shorter survival than those with kps – ( . ± . months, . ± . months, . ± . months, p= . and < . ). other results such as age ≥ years and higher number of brain metastases trended towards shorter survival but were not statistically signifi- cant. no difference in survival was found for patients who had received wbrt in addition to srs (p= . ). conclusions stereotactic radiosurgery has been shown to be safe and effective in treating brain metastases from breast cancer. we found our median survival to be . ± . months, an increase from other clinical reports. also, . % of our population was alive at years and . % survived years. significant prognostic factors can j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ help inform clinical treatment decisions. this study found that kps was a significant prognostic indicator of overall survival in these patients. evaluation of micronuclei frequency in cultured peripheral blood lymphocytes of prostate cancer patients before and after proton radiotherapy b chou, m vazque, a bertucci. loma linda university, colton, ca . /jim-d- - . purpose of study the purpose of this study is to evaluate whether peripheral blood lymphocyte (pbl) biomarkers can be used to characterize individual radiosensitivity and predict the severity of acute/late effects from proton radio- therapy (rt). we aimed to characterize dose and time response relationships for the in vitro and in vivo radiation induction of two biomarkers: micronuclei (mni) and bpi (p binding protein) foci in pbls. methods used forty patients with prostate cancer were treated with proton rt. depending on staging (t a to t a), one of four proton protocols was used: ) gy to prostate, ) gy hypofractionated to prostate, ) . gy to prostate and proximal seminal vesicles followed by . gy to prostate; and ) gy to prostate and seminal vesicles followed by gy to whole pelvis with photons. fractions were . gy except protocol , which received . gy/fraction. in vitro: prior to rt each patient’s blood was drawn and irradiated ( , . , , , and gy) with protons and gamma radiation. healthy donors also had samples irradiated to establish a control population. two assays were used to evaluate cytogenetic damage: mni frequency via the cytokinesis-block micronucleus method and pbi foci induction via immunocytochemistry. dose response curves were generated for each patient. in vivo: mni and pbi were assessed for each patient during the middle of treatment and at the end of treatment in order to correlate in vivo assay results with those of in vitro pbls. summary of results a dose- and time-dependent increase in the frequencies of mni and pbi foci was observed for both in vitro and in vivo irradiated samples. proton-induced mni increased linearly at low doses and saturated at high doses. gamma-induced mni also increased linearly at low doses but without saturation. at mid-treatment, an approximate two-fold increase was observed in the mni frequency compared to baseline. at treatment completion, mni frequency continued to increase, and was significantly higher than that of pre- and mid-treatment samples. conclusions mni formation in pbls can be a biomarker of in vivo and in vitro radiation exposure and individual sensitivity. also, our findings suggest that the individual dif- ferences between patients in mni yield for the prescribed doses appear to be significant. assessment of rassf c pirna-target genes in lung tumor tissues c sittlinger, , o fawibe, e ramley, m firek, y amaar, m reeves . loma linda university school of medicine, loma linda, ca; veterans affairs hospital, loma linda, ca; southern adventist university, collegedale, tn . /jim-d- - . purpose of study the ras association domain family (rassf ) gene encodes two major isoforms that play a role in carcinogenesis: rassf a, an established tumor suppres- sor, and rassf c, an emerging oncoprotein. our lab has discovered that rassf c promotes lung cancer cell prolif- eration and migration while attenuating apoptosis. rassf c also up-regulates important genes in lung cancer cell growth including a stem cell self-renewal gene, piwil . piwi-like proteins interact with small piwi-interacting rna molecules (pirnas) that are – nucleotides long to form complexes that regulate transcriptional and transla- tional repression leading to inhibition of apoptosis, stimula- tion of cell division and proliferation, and down-regulation of cyclin inhibitors and tumor suppressors. to further inves- tigate the rassf c-piwil -pirna axis in lung cancer, we carried out a global pirna microarray screen to identify pirnas that are regulated by rassf c in non-small cell lung cancer (nsclc). in this study, we assessed the expres- sion of the selected pirnas in nsclc tissues. methods used real time pcr: pcr was performed on rna isolated from tumor and matched normal lung tissues obtained from eight patients with nsclc using kapa syberr fast qpcr kit with a forward primer consisting of the first nucleotides of each pirna sequence coupled with a universal reverse primer. the real time pcr reac- tions were carried out in triplicates and the fold change was calculated using the −ΔΔct method. summary of results pir- and pir- were found to be upregulated in % of the lung tumor tissues when compared with corresponding normal tissue from the same patient. pir- , pir- , and pir- were downregulated in %, %, and % of nsclc tissues, respectively. in addition, there was an inverse correlation between pir- and rassf c expression levels in all of the nsclc tissues. conclusions variable levels of pirnas found in tumors suggest that these may be useful tools as biomarkers for early detection. pir- holds particular interest due to its negative correlation with rassf c. further investigation will be required to determine if pir- plays a role in some of the oncogenic functions of rassf c. minibeam therapy and tissue sparing potential a vassantachart, , r tailor, a dilmanian, j eley, s krishnan . md anderson cancer center, houston, tx; state university of new york, stony brook, ny; university of maryland, baltimore, md; loma linda university, loma linda, ca . /jim-d- - . purpose of study excessive radiation to tissue surrounding a target area is a common concern in radiation therapy, j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ especially when treating brain and superficial tumors. in this study orthovoltage x-rays at kv will be made into . -mm planar minibeams, using a collimator with -mm tungsten leaves, to determine if toxicity to proximal tissue can be spared. in addition the radiation target will be set in a linear motion at multiple angles to simulate physiological motion, such as breathing, to detect the extent of smearing and further enhance this method’s clinical relevance. methods used a collimator is placed in the kv beam path to create . -mm planar beams with -mm spacings. the divergence of the planar minibeams was measured by placing radiochromic film veritcally beneath the collimator for six minutes. the radiation was then repeated with the film moving -mm along the sagittal plane at , , , , , , , and degrees, parallel to the planar beams. a dose map was created from the films and the peak-to-valley ratios were found by dividing the average of the highest intensity beam by the lowest intensity spared region at each angle. summary of results at zero degrees the proximal end of the film showed clear, discrete lines but as the angle of movement increased, the lines became smeared and the merge depth occurred closer to the source, showing less skin sparing. proximal sparing was seen based on the high center beam dose and low dose where the tungsten leaves blocked the beam. the peak-to-valley ratio declined as the angle increased, with a ratio of . at zero degrees, . at five degrees, . at degrees, . at degrees and . at twenty degrees. conclusions smearing was minimal within a degree range, which supports use of this method in a clinical setting and demonstrates that movements such as breathing will not negate minibeam therapy benefits. proximal tissue sparing patterns observed after radiating with orthovoltage x-rays are analogous to previous studies using a proton beam. further studies may be conducted to see if this lower cost method can be implemented in underprivileged loca- tions because it can be operated at / ths of the cost of proton beams. immunologic profile of head and neck squamous cell carcinoma cancer stem cells e warnock, h serracino, m glogowska, a van bokhoven, s keysar, m lucia, a jimeno. university of colorado, aurora, co . /jim-d- - . purpose of study head and neck squamous cell carcinoma (hnscc) frequently recurs and metastasizes via cancer stem cells (cscs) through signaling mechanisms such as reliance on the pi k pathway. however, immune evasion is a critical component of cancer progression and the basis of the interaction between tissue stroma and hnscc tumor. the present study aims to elucidate the immunologic profile of hnscc in tissue stroma both in primary tumor sites and metastatic lymph nodes, and to correlate to clin- ical data. methods used we are comparing aldh , cd , sox , s k, pd-l , pd- , cd , cd , cd , cd , cd , cd , cd , cd , and cd expression between the primary cancer and lymph node metastasis sites in hnscc cases. each stained tissue section is stacked into a layered image array for each case and quantified by soft- ware simultaneously, allowing for direct comparison of relative expression. results are correlated to clinical data. summary of results there is a significant correlation between pdl and cd expression (spearman coefficient . , p= . ) in the first samples. this relationship was only seen in the hnsccs that had high expression of sox (spearman coefficient . , p= . , n= ), but not those with low sox expression (spearman coefficient . , p= . , n= ). conclusions our early data suggests that sox expression is related to pdl expression, and increased t-regulatory (cd ) expression. pdl expression is likely related to hnscc immune evasion. evaluation of mln as a novel therapy for pancreatic cancer a schreiber, s bagby, k quackenbush, w messersmith, j arcaroli. university of colorado school of medicine, denver, co . /jim-d- - . purpose of study pancreatic adenocarcinoma (pdac) is the fourth leading cause of cancer deaths annually. current therapies only minimally improve overall survival, indicat- ing that newer treatments for this devastating disease are urgently needed. an emerging class of targeted cell based biotherapeutics known as antibody drug conjugates (adc) are currently being developed for the treatment of cancer. mln , a novel investigational adc that targets guany- lyl cyclase c (gcc), consists of a fully human anti-gcc monoclonal antibody conjugated to the cytotoxic micro- tubule disrupting agent monomethyl auristatin e (mmae) via a protease cleavable linker (linker/toxin technology licensed from seattle genetics). the objective of this study was to determine the efficacy of mln as a potential abstract figure scatter plot showing relationship of pdl expression (percent of image pixels positive) and cd lymphocyte infiltration (as measured by percent image pixels positive) in hnscc. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ target specific agent for the treatment of pancreatic cancer. methods used five unique pancreas cancer explants were treated with mln and treatment responses were determined after days. tumor size was evaluated twice per week by caliper measurements. sensitivity to mln was defined as having a tumor growth inhib- ition index (tgii) of ≤ to %. the activation of p and chk were evaluated by immunoblotting at day after mln treatment. gcc expression was compared between matched normal and tumor tissue. summary of results two of the five pancreas tumor explants showed sensitivity to mln with panc having a tgii of . % and panc having a tgii of . %. the three remaining tumors panc , panc and panc , displayed intermediate sensitivity to mln having a tgii of . %, . % and % respectively. evaluation of the pharmacodynamic effects of mln revealed a significant increase in p and chk activation following treatment in the panc sen- sitive tumor. in addition, gcc protein expression was ana- lyzed by western blot in normal versus tumor tissue; a marked increase in gcc expression was observed in tumor tissue when compared to matching normal tissue. conclusions preliminary results show that mln has good activity in pancreas tumor explants. these findings support further investigation of mln for the treat- ment of pancreatic cancer. preclinical evaluation of the translational inhibitor svc in colorectal cancer k robertson, j tentler, p klauck, s bagby, t pitts, j kim, s eckhardt. university of colorado school of medicine, aurora, co . /jim-d- - . purpose of study colorectal cancer (crc) ranks third in new cases and cancer deaths in the u.s. annually. the current frontline treatments for metastatic crc (mcrc) are ineffective for an appreciable proportion of patients and cause significant toxicities. thus, there is an urgent need for the development of new therapeutic strategies. eukaryotic elongation factor (eef ) is often overex- pressed in crc causing upregulation of translation, upon which crc may be dependent. therefore, it may be pos- sible to differentially target crc cells vs normal cells by inhibiting translation. svc is a novel inhibitor of trans- lation through its ability to lock eef on the ribosome. as such, this agent may be effective against mcrc by blocking translation of key oncogenes such as c-myc which is overex- pressed in mcrc. methods used crc cell lines were exposed to svc in vitro and celltiter glo atp quantification was used to determine sensitivity or resistance based on ic values. immunoblotting was performed to assess levels of c-myc, p-s rp, and cyclin d in response to treatment with svc . amino acid incorporation was assessed using the click-it aha kit protocol. identification of genes and pathways associated with responsiveness to svc in vitro was determined by kegg pathway analysis. two cell line xenografts determined to be sensitive based on ic values were treated in vivo with svc . summary of results a subset of crc cell lines were deter- mined to be sensitive to svc in vitro. in these cell lines, c-myc is downregulated by svc in a dose- dependent manner. in resistant cell lines c-myc levels are not affected. moreover, svc causes a reduction of amino acid incorporation in sensitive cell lines and does not change amino acid incorporation in resistant cell lines. however, in the models tested thus far, svc has not shown efficacy in vivo with the experimental dosing regimen. conclusions svc shows anti-cancer effects in a subset of crc cell lines. resistance to svc in vitro is due to the inability of svc to bind to the drug target as it does not downregulate translation in resistant cell lines. further analysis of svc binding to the ribosome will be conducted. additionally, different dosing regimens in vivo may be warranted. central line associated blood stream infections in pediatric hematology/ oncology inpatients and outpatients a cruickshank, wh meyer, t carroll . university of oklahoma, edmond, ok; university of oklahoma, oklahoma city, ok . /jim-d- - . purpose of study central venous access devices (cvads) are required for care in pediatric hematology/oncology (ph/ o) but may become infected. central line associated blood stream infections (clabsi) are a major source of unreim- bursed costs and a serious cause of harm to patients. typical inpatient clabsi rates in ph/o are – / line days, but combined in/outpatient rates are not known. in a retrospective review we measured the incidence of in/out- patient clabsis and describe the first clabsi. methods used after irb approval, charts of patients treated in the ph/o center from / / to / / who were mos- yrs with cvad placed and seen at least twice were reviewed. data collected included demograph- ics, diagnosis, type of line placed, dates of placement and removal, and positive blood cultures. each culture was eval- uated using cdc clabsi criteria and only those meeting criteria were considered. the total number of clabsis was divided by the total number of line days to determine the overall incidence rate of clabsis. the frequency of demo- graphics, timing, cvad type, and cancer category were also analyzed for the first clabsi. summary of results during the study period, of unique patients seen during this -yr period, had cvads placed. there were new cvads with complete data and , central line days during the study period. there were clabsis, and the overall incidence was . / central line days. the mean length of time a cvad was in place was days ( % ci , ). the mean time to first clabsi was days ( % ci , ). patients with acute myeloid leukemia (aml), stem cell transplants (sct) and those patients who had a double lumen (dl) broviac, peripherally inserted central catheter (picc) had the highest incidence of an initial clabsi ( . , . , . , and . / central line days p< . using chi-square). patients had more than one clabsi. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ conclusions to our knowledge, this is the first analysis of clabsi in a combined in/outpatient ph/o population. dl broviacs, piccs, patients with aml and sct had the highest incidence of clabsis. using this data, targeted efforts can be studied to prevent clabsi in these high-risk populations. correlation between epithelial-mesenchymal transition and invasiveness in ovarian cancer cell lines and orthotopic xenograft m mccarthy, h campos, t suzuki, a hill, l sanderman, j unternaehrer. loma linda university, loma linda, ca . /jim-d- - . purpose of study within united states women, ovarian cancer (oc) is the th most common cancer and the th most common cause of cancer death. in women greater than years old, median year survival is still below %. approximately % of malignant oc tumors are of epithelial origin. epithelial-mesenchymal transition (emt) is the process by which relatively sedentary epithelial cells assume a more migratory and invasive mesenchymal phenotype. while emt occurs normally during gastrula- tion and embryo development, its reoccurrence in adult- hood is associated with pathological processes such as cancer metastasis. emt causes the downregulation of inter- cellular adhesion proteins and the upregulation of matrix metalloproteases, both of which facilitate mobility and invasive capacity. the transcription factors snail (sn) and twist (tw) are known to induce this transition. though emt has been demonstrated to occur in early oc tumori- genesis, much remains to be elucidated in relation to oc pathophysiology and how it relates to emt. we wish to examine the effects of induced emt on oc invasiveness, and hypothesize that induction of emt via sn and tw will increase oc invasiveness. methods used the human oc derived cell line ovasho was subjected to knockdown and overexpression of sn and tw. migratory capacity, invasiveness and anchorage inde- pendent growth were assessed using three assays: cell wound closure assay, transwell invasion assay and soft agar colony formation assay respectively. characterization of migratory capacity and anchorage independent growth of other oc derived cell lines (ovcar and cov ) are currently being assessed. the oc line ovcar and patient derived cells were injected into ovarian bursa of nude mice to create an orthotopic xenograft model of oc. tumors were tracked with bioluminescent imaging. summary of results overexpression of tw and sn in ovsaho was accompanied by increased migratory cap- abilities but no observable effect on anchorage independent growth. initial bioluminescent assessment of oc injected mice suggests a correlation between sn knockdown and reduced tumor growth. conclusions overexpression of tw and sn may increase migratory capacity or rate of proliferation, and the knock- down of sn may reduce rate of tumor growth. quality of online resources for pancreatic cancer patients l degroot, p ingledew , . university of british columbia, vancouver, bc, canada; bcca - fraser valley cancer agency, surrey, bc, canada . /jim-d- - . purpose of study the internet is a growing source of information for pancreatic cancer patients. given that the disease is usually diagnosed at an advanced stage, access to quality information in a timely manner is critical. our aim is to systematically assess the information available to primary pancreatic cancer patients on the internet. methods used an internet search using the term “pancre- atic cancer” was performed, with the meta-search engines “dogpile”, “yippy” and “google.” the top websites returned by the search engines were evaluated using a vali- dated structured rating tool to assess their currency, disclos- ure, attribution, interactivity and content. inter-rater reliability was confirmed via kappa statistics and results were analyzed via descriptive statistics. summary of results the results of pancreatic cancer websites revealed both strengths and notable gaps. while % of websites disclosed ownership, sponsorship and advertising, only % identified an author. % of websites identified a date of creation, but % of websites were last updated over years ago or had no date of last modification identified. with respect to coverage, etiology/risk factors and symptoms were almost always accurate and most likely to contain all required information ( and % of web- sites). conversely, prevention and prognosis were the least accurate and least completely covered sections ( and %). % of websites were at a university reading level. conclusions since the majority of patients use a search engine to access health information rather than direct links from reputable sources, it is important to inform patients about the strengths and weaknesses of information. with respect to pancreatic cancer, this study shows the quality of online pancreatic cancer information is variable. many web- sites are outdated and lack author information. while the majority of information presented is factually correct, sites may lack information on prognosis. this knowledge can inform the dialogue between healthcare providers and patients addressing the gaps in the available information. infectious diseases ii concurrent session : pm friday, january , identifying men who have sex with men and transgender women who have poor linkage to hiv care in lima, peru a primbas, m villaran, , a duerr , . university of washington school of medicine, seattle, wa; impacta peru, lima, peru; fred hutch cancer research center, seattle, wa . /jim-d- - . purpose of study hiv is a growing public health concern in peru, especially among men who have sex with men j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ (msm) and transgender women (tw). the peruvian ministry of health antiretroviral therapy (targa) program provides accessible hiv care at most hospitals in the country. few studies have evaluated the hiv care cascade and barriers to linkage to care in the peruvian health system, where antiretroviral therapy is provided for free. methods used msm and tw in lima, peru were screened for hiv at enrollment into a treatment as prevention study between may and may . participants who were hiv-positive at baseline were referred for hiv care. study data from the enrollment visit for these participants were linked to targa program data. potential predictors of linkage to care were gathered from questionnaire data on demographics, sexual identity, alcohol use, and history of sex work collected prior to hiv diagnosis. we used uni- variate and multivariate logistic regression and survival ana- lysis to model care linkage within months. summary of results of participants, were newly diagnosed with hiv. approximately % ( parti- cipants) linked to care within months. in logistic regres- sion, alcohol use disorder (aud; hazardous or harmful drinking, or alcohol dependence) was a strong negative pre- dictor of linking to care (or= . , p= . ). additional risk factors included previous history of sex work (or= . , p< . ) and bisexual identity (or= . , p= . ). a trend of lower linkage was observed for tw (or= . , p= . ). participants years or older were more likely to link to care (or= . , p< . ). cox regression analysis gave similar results. income and educa- tion level were not statistically significant in predicting linkage. conclusions vulnerable populations (sex workers, high risk drinkers, youth, and bisexuals) were significantly less likely to link to care within the overall msm population. aud is common – msm and tw in peru are five times more likely to have aud than the general male peruvian population. thus, alcohol use disorder provides an oppor- tunity for intervention that is currently not being addressed during patient referral. lower rates of linkage among sex workers, youth and bisexuals also warrant further study. effects of interferon gamma on the respiratory burst of variant x-linked chronic granulomatous disease patients versus classic x-linked disease hr hill, , , nh augustine, la miles, j rejali, ko woodbury, b pasi, tb martins, a kumanovics , . university of utah, salt lake city, ut; university of utah, salt lake city, ut; arup laboratories, salt lake city, ut . /jim-d- - . purpose of study the purpose of this study was to evalu- ate the effect of recombinant interferon gamma (ifn-γ) on the respiratory burst (and in some instances nitric oxide production) by polymorphonuclear leukocytes (pmn) and monocytes of patients (n= ) with variant x-linked chronic granulomatous disease (cgd) in comparison to patients (n= ) with classic x-linked cgd, carrier x-linked mothers, and controls. methods used we employed phorbol myristate (pma) sti- mulated dihydrorhodamine fluorescence (dhr) as well as the determination of superoxide production induced ferri- cytochrome c reduction after incubation of the cells in culture media containing recombinant human ifn-γ (actimmune; horizon pharma plc, dublin, ireland) in varying concentrations for varying periods of time. all cgd patients had been confirmed to be either variant, or severe x-linked cgd cases by dhr fluorescence and the exact mutation determined by high resolution melting and targeted exon sequencing. summary of results two of the four variant cgd patients and one of the two classic x-linked patients demonstrated increases in pmn superoxide production after incubation with ifn-γ. one of three variant x-linked female carriers had an increase in pmn superoxide induced by ifn-γ. two variant cgd patients and their carrier mothers and two x-linked severe cgd patient and their carrier mothers showed increases in monocyte superoxide production after incubation with ifn-γ. in contrast, we seldom saw signifi- cant enhancement of dhr reduction to rhodamine follow- ing incubation with ifn-γ as recently reported. conclusions in conclusion, incubation of pmns and monocytes from patients with variant and severe x-linked cgd and their carrier mothers showed enhanced super- oxide production in both severe x-linked patients and of variant patients and their mothers indicating that it is likely that the specific mutation may determine subsequent responses to ifn-γ. disseminated coccidioidomycosis in children jm lee, , m tablizo, a graciano . ucsf-fresno, fresno, ca; valley children’s hospital, madera, ca; valley children’s hospital, madera, ca; valley children’s hospital, madera, ca . /jim-d- - . purpose of study to describe the clinical presentation, treatment and outcome of coccidioidomycosis in children admitted to a tertiary pediatric intensive care unit (picu) located in the san joaquin central valley. methods used retrospective review of charts, laboratory and imaging records of all coccidioidomycosis patients admitted to the picu between january st - december st . summary of results seven patients ( males, females) were admitted to the picu, mean age years (. – years). all patients had at least one previous medical visit, four previously hospitalized for pneumonia and one for “viral meningitis”. disseminated disease (central nervous system, cardiac, mediastinal, and/or bone disease) was present in all cases. diagnosis was made by enzyme linked immunoassay, immunodiffusion, complement fixation, fungal culture and/or histopathology. all patients received intravenous amphotericin. six patients received both amphotericin and an azole antifungal. three patients, refractory to amphothericin, received intravenous caspo- fungin and voriconazole. one patient had fungal meningo- encephalitis and also received intrathecal amphothericin and interferon gamma. treatment continued until the j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ normalization of titers and clinical and radiologic reso- lution of the disease. mean length of treatment was months ( – months). patients underwent surgical debridement and excision of fungal lesions. mean picu length of stay was days ( – days) and mean hospital length of stay was days ( – days). two patients died. conclusions despite being in an endemic area, coccidi- oidomycosis diagnosis and subsequent treatment is delayed due to lack of recognition. risk factors for disseminated disease in previously healthy children are not known. further studies elucidating immune factors and effective- ness of combination antifungals are needed. impact of rapid organism identification with matrix-assisted laser desorption/ ionization time-of-flight on outcomes in hospitalized pediatric patients l herrera, k culbreath, w dehority . university of new mexico, albuquerque, nm; university of new mexico school of medicine, albuquerque, nm; tricore reference laboratories, albuquerque, nm . /jim-d- - . purpose of study identification of causative agents of bac- teremia traditionally relies upon time-consuming microbio- logical techniques that may require several days. however, use of matrix-assisted laser desorption/ionization time-of-flight (maldi-tof) mass spectroscopy has demonstrated more rapid and accurate identification of blood pathogens in adult populations, which in turn has improved clinical outcomes with concurrent use of an anti- microbial stewardship team (ast). we present the first data on the use of maldi-tof in hospitalized children without use of an ast. methods used we retrospectively assessed time to organ- ism identification (after growth on culture) and length of stay in all hospitalized children with bacteremia in utilizing the phoenix automated microbiology system (phx), and in utilizing both maldi-tof and the phx system. a welch’s t-test was used to assess for statis- tical significance in mean differences. summary of results total blood cultures ( in and in ) were collected from patients ( in and in ). the most frequently identi- fied organisms included coagulase negative staphylococci ( . %), s. aureus ( . %), enterococcal species ( . %) and viridans group streptococci ( %). in , maldi-tof identified of the organisms the phx system was unable to identify. maldi-tof identified organisms a mean of . hours faster than the phx system in (p< . ). however, there was no signifi- cant difference in the duration of hospitalization between and ( . vs. . hours respectively, p= . ). no significant diffferences were seen when only shorter hospitalizations were considered (> hours and < hours in length, p= . ). conclusions maldi-tof identified organisms from blood cultures nearly hours faster than traditional microbiologic methodology among hospitalized children. despite these timesavings, the duration of hospitalization was not significantly reduced without concurrent use of an ast. these are novel findings which argue for the import- ance of providing real-time feedback to providers in the context of an antimicrobial stewardship program. salmonella osteomyelitis in immunocompetent children: a case series and review of the literature df pavlik, a gill, m muller, j eldredge, m eickman, w dehority . university of new mexico, albuquerque, nm; the university of new mexico, albuquerque, nm . /jim-d- - . purpose of study salmonella typhi osteomyelitis is fre- quently encountered in children with sickle cell anemia (sca), particularly in resource-limited settings. however, the frequency and clinical course of non-typhoidal salmonella osteomyelitis in otherwise healthy children is poorly described. we present a case series of such patients and systematic review of the literature. methods used children < years of age discharged between march st and march st from our institution were retrospectively assessed for acute osteomye- litis utilizing different icd- codes. abnormal imaging and a compatible history were required. a faculty librarian conducted a pubmed search with the following strategy to produce references: “salmonella”[mesh]) not “salmonella typhi”[mesh]) and “osteomyelitis”[mesh] filters: humans; english; child: birth- years. references from relevant studies were also searched. summary of results one case of osteomyelitis was identi- fied in our clinical review. additionally, we identified cases at our institution during . all patients were male, immunocompetent and without sca. the fibula, talus, femur, tibia and t vertebral body were involved. s. enterica serotype durban, s. enterica serotype montevido, s. enterica serotype oranianeburg and salmonella enterica serotype san diego were isolated. reptile exposure was present in subjects. one subject was bacteremic. our lit- erature review produced cases between and , with from the u.s. ages ranged from months to years (mean . years), with boys. s. enterica serotype enteriditis was the most common serotype ( cases). no risk factors were reported in %, and only were asso- ciated with reptile exposure. only patients ( . %) had antecedent gastrointestinal illnesses. vertebral involvement was most commonly reported ( patients). only . % of blood cultures demonstrated growth of salmonella. suppurative complications were reported in ( . %) subjects, with relapse in ( . %). conclusions salmonella osteomyelitis is a rare but serious infection in immunocompetent children without sca. risk factors for salmonella infection may be absent and blood cultures may be sterile. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ effectiveness of powerpoint presentations in teaching emergent dermatosis to pediatric residents gg still, h chandnani, s palathumpat, o ingaramo. unsom pediatric residency, las vegas, nv . /jim-d- - . purpose of study: background identification of skin dis- orders is vital in the repertoire of outpatient, er, and inpatient pediatric physicians, but many physicians and even dermatologists report deficiencies in their knowledge and comfort with pediatric dermatology while in residency. objective to determine if furthering the education of pediatric residents through interactive lectures during resi- dency training will increase their ability to identify, diag- nose and treat pediatric emergent dermatosis. methods used resident physicians were given a -question pretest following by a series of post-tests based on content specifications from american academy of pediatrics (aap). the post-tests were provided after inter- vention with powerpoint lectures. summary of results over five months, from november to april , a total of pediatric residents ( pediatric year i (pgy ), pediatric year ii (pgy ), and pediatric year iii (pgy )) were tested on emergent der- matological conditions. total possible participants included: pediatric residents; actual participants ( % of the possible participants). assessment of long- term memory showed that the phase mean score for pgy ( . ) is significantly different than phase mean score for pgy ( . ), (p< . ). there were no sig- nificant differences in the scores from second or third year residents. conclusions this study’s results depict that overall, there is a statistically significant improvement noted from the pre-intervention test and post-intervention test, primarily in the first-year residents. although the second and third year residents did not produce statistically significant improvements in their scores, they did generate education- ally significant results. their scores and their level of comfort improved overall after the intervention. expression patterns of heme oxygenase- in immune cells during late gestational inflammation m ozen, h zhao, f kalish, y yang, db lewis, rj wong, dk stevenson . stanford university school of medicine, stanford, ca; stanford university school of medicine, stanford, ca; stanford university school of medicine, stanford, ca . /jim-d- - . purpose of study heme oxygenase- (ho- ) is a major regulatory enzyme in innate and adaptive immunity. induction of ho- inhibits phenotypic maturation of den- dritic cells (dcs) and regulates regulatory t-cell (treg) responses. we have established a late gestational inflamma- tion model, which results in maternal immune cell changes, placental pathology, and pup loss. here, we extend these findings to determine the expression of intracellular ho- in maternal inflammatory immune cells using this model. methods used pregnant wildtype (wt) dams (n= ) were injected ip with lipopolysaccharide (lps, e. coli, mg/kg) at e . and monitored for signs of systemic infection. at h post-lps (lps-pr), blood and spleens were collected. untreated age-matched pregnant (pr) (n= ) and non- pregnant (npr, n= ) females served as controls. ho- expression patterns in immune cells were identified using multicolor flow cytometry. summary of results compared to pr dams, exposure to lps significantly increased ho- expression in blood neu- trophils, monocytes, and dcs. ho- in blood mhc ii+ mature dcs was highest among all immune cell popula- tions for all groups. most interestingly, splenic monocytes were totally absent in lps-pr dams compared to pr and npr controls (see table ). conclusions in summary, the effect of lps on intracellular ho- expression in inflammatory immune cells appears to be tissue specific. in addition, the lps-induced phenotypic maturation of dcs appears to coincide with an increased expression of ho- in blood dcs. we conclude that since mature dcs activate effector adaptive responses, they may disrupt immune homeostasis and then lead to adverse changes as a result of inflammation during pregnancy. morphogenesis and malformations concurrent session : pm friday, january , microphthalmia with limb anomalies (mim # ). a recognizable syndrome involving the development of the eyes, brain and limbs m del campo, i odom, l gist, j dwek, kl jones. ucsd, la jolla, ca . /jim-d- - . case report microphthalmia with limb anomalies (mim # ) was initially reported by waardenburg in . this autosomal recessive condition has also been named waardenburg anophthalmia syndrome, acromesomelic syn- drome and anophthalmia syndactyly. the condition has been reported in cases since then and is known to be abstract table intracellular ho- -expression in blood and spleen immune cells (mfi±sem) blood ho- npr pr lps-pr p neutrophils ± ± # ± # # . monocytes ± ± # ± # #< . mhc ii+ dcs ± * ± *# ± # * . , # . spleen ho- neutrophils ± ± ± ns monocytes ± ± # . ± . # #< . dcs ± ± ± ns j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ caused by mutations in the secreted modular calcium- binding protein smoc (mim # ) since . a year old girl was referred for genetics/ dysmorphology because of lack of vision due to severe microphthalmia, abnormal hands and feet, severe intellec- tual disability with lack of speech but reporting hyperacu- sis, prolonged g-tube feeding and constipation. she was adopted from india, had suffered neglect and malnutrition, but nothing is known about her family history. her phys- ical exam showed short stature, microcephaly, very short downslanting palpebral fissures, a depressed midface, a prominent philtrum, mild scoliosis and an anterior anus, syndactyly of hands ( – ) with marked ulnar deviation of the th finger, a sandal gap with syndactyly – and oligo- dactyly of feet missing the th toe, a linear crease over the tibia, mild scoliosis and hypermobile joints. a skeletal x-ray survey identified hypoplastic femoral heads and absent proximal fibulae, bony syndactyly – in both hands, and a missing th toe. a snp array identified several large fragments of homo- zygosity, the largest mb in size including q , where smoc is located. close consanguinity is suspected. sequencing of smoc is pending. the review of all previously reported cases shows con- sistent diagnostic findings, allowing for a firm clinical diag- nosis, where the severe microphthalmia and the limb radiologic anomalies are specific. zebrafish and mouse model studies have shown the implication of the gene, a member of the smarc (osteonectin) family, in the devel- opment of the optic vesicles that undergo arrest in develop- ment, as well as in several areas of the brain and the limbs. reduced apoptosis through disregulation of the bone mor- phogenetic proteins (bmps) is well proven in smoc null mice, and underlies the syndactyly phenotype. all reported smoc human mutations predict complete loss of func- tion of the protein, owing for this consistent recognizable phenotype. chest wall asymmetry and absent lung in uniparental disomy t wilson, s dugan, jc carey. university of utah, salt lake city, ut . /jim-d- - . case report trisomy is the most common chromosome defect found in spontaneous abortions. a small fraction of pregnancies affected by trisomy can survive to term by trisomy rescue resulting in uniparental disomy of chromo- some and occult trisomy mosaicism. there is a well- described mosaic trisomy syndrome with the following features; symmetric iugr, slow growth, imperforate anus, hypospadias, and normal cognition. most interestingly if these cases survive past delivery the prognosis then becomes quite favorable. this report adds chest wall defects and pulmonary artery stenosis to that phenotype. this female infant presented with symmetric iugr, com- plete agenesis of the left lung, complete absence of the left pulmonary artery and significant hypothelia of the left breast bud. she also presented with congenital scoliosis and underdevelopment of her left chest wall which were thought to be a secondary to her absent lung. she was otherwise symmetric in her extremities and facial features. a microarray was ordered as part of a work up for multiple congenital abnormalities which showed stretches of homo- zygosity of chromosome consistent with trisomy rescue. to demonstrate that her thoracic abnormalities were due to trisomy rescue we reviewed ‘parent stories’ of children that had been made public online by the disorders of trisomy foundation. out of those cases we found similar asymmetric findings in / . one had absence of the left breast which became noticeable at puberty. one had absence of the right nipple. one had unspecified hemihypertrophy. one had fused ribs and hemivertebra. and the last had partial absence of the left lung, congenital pulmonic stenosis and died due to compli- cations from pulmonary hypertension. a major limitation of this study is that personal narratives were reviewed instead of original medical records. further work will need to be done to formally phenotype these cases. importantly, these results suggest that trisomy rescue should be con- sidered as a diagnosis in patients with iugr and chest asymmetry. it also suggests that for patients with trisomy rescue screening recommendations should include echo- cardiograms with the pulmonary arteries as congenital pul- monary artery stenosis may be more frequent than otherwise expected. classifying congenital defects by cause and clinical presentation: a population-based study in utah ml feldkamp, ld botto, j byrne, , s krikov, jc carey . university of utah, salt lake city, ut; university of utah, salt lake city, ut . /jim-d- - . purpose of study understanding the causes of congenital defects is a clinical, research, and public healthy priority. epidemiologic studies report many associations with genetic or environmental factors; however, only studies have directly explored the applicability of these findings in clinically well-defined population-based cohorts. to this end, we developed a multidimensional classification system that considers etiology (known, unknown), morphology (isolated, multiple major, minors only), and pathogenesis (sequence, development field, pattern). methods used we used this classification system to assess a cohort with major defects among all pregnancy outcomes (livebirths, stillbirths, pregnancy terminations) from utah’s population-based birth defect surveillance system. excluding selected mild conditions (e.g., muscular septal defect), we generated a final cohort of , cases (birth prevalence, . %). summary of results using strict and systematic criteria for causal assignment, . % were assigned a known etiology (n= , ). most cases with a known etiology were chromosomal or single genetic conditions ( , . %) with a small proportion due to a known human teratogen ( or . %) such as uncontrolled pregestational diabetes or abnormalities of twinning (e.g., conjoined or acardiac twins; or . %). overall, . % (n= , ) could not be assigned a clear etiology, with the majority being iso- lated defects ( , or . %). j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ conclusions these findings underscore the current gaps in causal knowledge that hinder the translation of epidemiolo- gic associations to specific cases of congenital defects, even for risk factors deemed to be well known (e.g., smoking). this etiological classification of congenital defect cases is a sensitive tool for assessing our current knowledge about causation. the minimum estimates of cases directly attrib- utable to specific factors underscore the need to dramatic- ally improve our understanding of congenital defects in order to reduce their occurrence. mesoderm loss of sonic hedgehog and tgf-beta signaling cause tracheal malformations d mathur, , ns bhopal, , a fischer, , p minoo , . lac+usc medical center, los angeles, ca; children’s hospital los angeles, los angeles, ca . /jim-d- - . purpose of study the trachea is the major structure that connects the upper airways to the gas exchange units of the lungs. in neonates, abnormalities in development of trachea cause life threatening malformations such as tra- cheal stenosis or tracheomalacia. we have been interested in the molecular and cellular signaling mechanisms that govern tracheal and lung morphogenesis. two major signal- ing pathways in vertebrate development are tgf-beta and sonic hedgehog. methods used the boundaries of the mesodermal com- partments within the trachea were examined by assessing expression of sox , α-smooth muscle actin (αsma), and platelet-derived growth factor receptor α (pdgfrα). the epithelial compartment was identified by immunostaining for nkx . . the potential role played by tgfβ or shh signaling in the establishment of compartments and differ- entiation of their mesodermal cells was examined by tar- geted inactivation of alk or smoothened in early mesodermal progenitors. summary of results at e . , pdfrα is broadly expressed in the ventral mesoderm surrounding the anterior foregut, the site of specification of the lung endodermal primor- dium, identified as nkx . positive. sox is expressed in both mesoderm and foregut endoderm, co-localized with nkx . , the origin of all pulmonary epithelial cell types. at e . , pdgfrα, sox and αsma are confined to three mesodermal compartments with delineated boundaries sur- rounding the nkx . positive cell domain. subsequently, sox expression becomes exclusively restricted to the mesoderm, and epithelial expression ceases. inactivation of either alk or smoothened in the mesodermal progenitors disrupts all three compartments. conclusions tgfβ signaling via alk and shh via smoothened play critical roles in early patterning and organization of the normal mesodermal and endodermal compartments. this research is supported by nhlbi and the hastings foundation. functional engraftment of murine mc t -e pre-osteoblastic cells in a zebrafish model of epimorphic regeneration bg douglass, ry kwon, ch allan. university of washington, seattle, wa . /jim-d- - . purpose of study it has long been established that uro- deles such as newts and salamanders have the capacity to regenerate limbs following amputation. this occurs through epimorphic regeneration, a process characterized by the formation of a proliferative mass of partially dedif- ferentiated cells called the blastema. the engraftment of mammalian cells into the blastema would represent a powerful strategy to identify novel factors regulating bone regenerative processes. however, such xenograft models have yet to be developed due to incompatibilities in amphibian and mammalian biology (e.g., differences in body temperature). methods used to address this challenge, our goal was to develop a xenograft model of epimorphic regeneration by introducing mammalian cells into the zebrafish tail fin. for cell injections, we employed the mc t -e murine pre- osteoblastic cell line, a standard and well-characterized model of mammalian osteoblastic differentiation. two days post amputation (dpa) of the caudal fin, zebrafish were injected with cm-dii-labeled mc t -e cells either intra- muscularly, proximal to the caudal fin (to examine homing), or directly into the blastema. all studies were carried out in fish housed in ∼ °c water, a temperature which we discov- ered was permissive to both fish and cell survival. summary of results cells directly injected into the blas- tema exhibited clear cellular engraftment and stability. cellular activity was variable from fish-to-fish, with some cells remaining in stable clusters, and others showing migra- tion and/or proliferation. at dpa, decreased fluorescence was observed, potentially occurring due to the dye fading and/or immune system activity. no injected cells were observed in the blastema following intramuscular injection. conclusions collectively, our studies suggest that the regenerating zebrafish tail fin may serve as a viable system for xenograft models of bone regeneration, and further indi- cate that mammalian cells are fundamentally capable of sur- viving in an environment undergoing epimorphic regeneration. provided the correct conditions, mammalian cells may be capable of engrafting and proliferating in an epimorphic regeneration process. craniosynostosis: variant sequence analysis of the thyroid signaling pathway ae lewis. university of washington school of medicine, seattle, wa . /jim-d- - . purpose of study craniosynostosis (cs), the pathologic premature fusion of cranial sutures, may have many under- lying causes including genetic components and potentially j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ alterable environmental factors. several observational studies indicated a link between thyroid dysregulation and cs. the purpose of this study was to identify sequence variation of genes in the thyroid pathway with the hypoth- esis that sequence variants predispose children to cs. methods used within the previously completed rna sequence data of osteoblast cell lines derived from cs and control patients, the variant expressions of thyroid genes were filtered limiting the candidate gene list to those most likely resulting in disease. the list was further narrowed using combined annotation-dependant depletion (cadd-phred) scores above , indicating a likelihood of being deleterious, and genomic evolutionary rate profiling (gerp) scores above , demonstrating evolu- tionary conservation. from this analysis, the two most promising candidate genes, glis n= , and nlrp n= , including distinct variants associated with cs, were identified in individuals. to validate each variant, primers were designed, and polymerase chain reaction (pcr) was used to amplify the regions of interest in patient and control genomic dna. after optimization, each of these pcr products was sanger sequenced to provide visual confirmation of variants. summary of results the dna samples were amplified via pcr and separated using gel electrophoresis. afterward, products each from cs cases and controls were sent for sequencing. % of the control sequences were homozy- gous at the desired locus, while % of the cs sequences confirmed the variants identified by rna sequencing. conclusions the validation of the variants suggests these patients do have potentially disease-causing variants in thyroid pathway genes associated with bone formation, while none of the non-cs control samples showed variants in these pathways. these variants, rarely seen in large control cohorts, may predispose individuals to cs via genetic or an environmental and genetic interaction. additionally, many of the patients share variants in other genes indicating a potential multigenic inheritance interaction. gastrointestinal features in a newborn with curry-jones syndrome k wigby, r broderick, j law, kp davenport, s bickler, , mc jones . university of california san diego, san diego, ca; university of california san diego, san diego, ca; rady children’s hospital, san diego, ca . /jim-d- - . case report curry-jones syndrome (cjs) is a pattern of malformation that includes craniosynostosis, pre-axial poly- syndactyly, agenesis of the corpus callosum, cutaneous and gastrointestinal abnormalities. nine cases have been reported in the literature. this report describes the gastro- intestinal and surgical findings in a baby with cjs who pre- sented with abdominal obstruction. a week gm, female presented with craniosynos- tosis, pre-axial polysyndactyly, and patchy, atrophic areas of depigmentation on the unilateral trunk and lower extremity consistent with a clinical diagnosis of cjs. on the second day of life she developed abdominal distension and underwent a rectal suction biopsy to exclude hirschsprung disease. the biopsy revealed ganglion cells and rare minim- ally hypertrophied nerve bundles. an upper gi was sug- gestive of malrotation without volvulus. exploration revealed an intestinal malrotation for which she underwent a ladd procedure. additional findings were multiple small nodules on the surface of the small and large bowel, and an apparent intestinal duplication that seemed to originate posterior to the pancreas. histopathology of serosal nodules revealed bundles of smooth muscle with associated ganglion cells. post-operatively, the infant had a prolonged ileus. the infant was discharged home on full oral feedings on hospital day number forty-five. gastrointestinal smooth muscle hamartomas are a recog- nized feature of children with cjs typically presenting with abdominal obstruction requiring surgical intervention. two of the nine cases described in the literature had similar involvement. pseudo-obstruction and congenital short bowel have also been described. gastrointestinal findings in these patients likely relate to aberrant development of the enteric nervous system with impaired peristalsis and obstruction from bowel hamartomas. all cases of cjs have been sporadic. as a germline mutation would likely be lethal, this disorder is probably caused by mosaicism. a novel de novo mutation in cacna a is associated with atypical neurological features and mitochondrial dysfunction nn derar, c brown, j platt, g enns . stanford, stanford, ca; diablo valley child neurology, pleasant hill, ca . /jim-d- - . purpose of study mutations in cacna a, a gene that encodes the pore-forming alpha subunit of human voltage-gated cav . (p/q-type) ca + channel, cause several autosomal dominant neurologic disorders character- ized by paroxysmal symptoms, including episodic ataxia type , familial hemiplegic migraine type , and spinocere- bellar ataxia type . brain abnormalities, including cerebral edema and cerebellar vermian atrophy, may be present. to increase understanding of the phenotypic spectrum asso- ciated with calcium ion channel defects, we report a boy with a novel de novo p.f i (c. t>a) variant in cacna a. methods used whole exome sequencing (wes) and retro- spective chart review. summary of results we report a -year-old boy with developmental disability primarily in motor skills. he can work a computer, follow commands and communicate well with his mother. he has diffuse hypotonia with myopathic weakness, oculomotor and speech apraxia. although he had short episodes of tonic upward gaze appearing at months, these paroxysms decreased after years with no additional significant paroxysmal symptoms. muscle elec- tron transport chain analysis at months showed complex i deficiency at % of the control mean ( nmol/min/mg protein; nl – nmol/min/mg protein), and he was initially considered to have a mitochondrial dis- order. at years, electron transport chain activity was per- formed on fibroblasts and results were normal. wes j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ detected a novel de novo p.f i (c. t>a) variant in cacna a that was predicted to be deleterious by in silico modeling. conclusions our case illustrates that cacna a variants may be associated with significant developmental disability and hypotonia in the absence of more classical paroxysmal symptoms, such as ataxia or migraine. mitochondrial complex i deficiency was also present in our patient. because an abnormality in complex i genes was not identi- fied on wes, it appears that the biochemical complex i deficiency observed in this case may be a secondary phe- nomenon. it is tempting to speculate that there may be mitochondrial involvement in channelopathies related to cav . abnormalities, but further studies are needed to elucidate the possible role of mitochondrial dysfunction in disease pathogenesis. neonatology general iv concurrent session : pm friday, january , delayed epo therapy improves behavioral and histological outcomes after neonatal rodent stroke a larpthaveesarp, m georgevits, d ferriero, , f gonzalez . ucsf, san francisco, ca; ucsf, san francisco, ca . /jim-d- - . purpose of study stroke is a major contributor to neonatal morbidity and mortality, and diagnosis is often delayed. there are also no therapeutic options specific for neonatal stroke. the purpose of this study is to investigate the effi- cacy of delayed initiation of multiple dose erythropoietin (epo) therapy to repair the immature brain after stroke. methods used postnatal day (p ) sprague-dawley rats underwent sham surgery or transient middle cerebral artery occlusion (mcao) for three hours, resulting in mod- erate injury. epo ( u/kg) or vehicle was administered intraperitoneally at age p , , and (three doses total). at four weeks after mcao sensorimotor function was assessed in these four groups (vehicle-sham, epo-sham, vehicle-mcao and epo-mcao) with forepaw preference in cylinder rearing trials. animals were then sacrificed and brains sectioned for hemispheric volume analysis. summary of results a total of rats underwent transient mcao or sham surgery. epo-mcao animals performed significantly better in forepaw use compared to vehicle-mcao animals at four weeks after stroke (p< . ), with more symmetric use of their forelimbs, and did not differ from shams (p= . ). there was also a significant increase in hemispheric brain volume in epo-mcao compared to vehicle-mcao animals (p< . ), which correlated with functional performance (p= . ). conclusions these results suggest that delayed epo therapy improves both behavioral and histological out- comes at one month following neonatal stroke, and may provide a late treatment alternative for early brain injury. a phase ii randomized controlled trial of erythropoietin and hypothermia for neonatal neuroprotecion in hypoxic-ischemic encephalopathy s juul, f gonzalez, k van meurs, r ballard, y wu, for the neato trial group . stanford, palo alto, ca; ucsf, san francisco, ca; u washington, seattle, wa . /jim-d- - . purpose of study among infants with hypoxic-ischemic encephalopathy (hie), to evaluate safety and biomarkers of brain injury in those treated with erythropoietin+hypo- thermia, compared to those treated with hypothermia alone. methods used in a double-blind placebo-controlled trial, we enrolled newborns with moderate (n= ) or severe (n= ) hie. all patients had encephalopathy; perinatal depression ( -minute apgar ≤ , ph < . or base deficit ≥ , or need for resuscitation at minutes); and received hypothermia. we randomized newborns to receive epo u/kg iv or placebo at , , , and days. two inde- pendent observers determined mri brain injury severity using the washington university scoring system. - and -month developmental outcomes were assessed by warner initial developmental evaluation (widea) ques- tionnaire. summary of results of newborns with hie at hos- pitals, ( %) met study eligibility, and were enrolled (consent rate = %). mean consent age was . (sd . ) hours. mean age at st study drug was . (sd . ) hours. there were no safety concerns. in-hospital mortality was %. mean widea score at months was higher in epo-treated babies (table ). month evaluations are on-going. brain mri at mean . (sd . ) days showed lower brain injury score ( . vs. . ) and less moderate/ severe brain injury ( % vs. %) in epo vs. placebo groups. subcortical injury (i.e., basal ganglia, thalamus or posterior limb of the internal capsule) was less common in the epo than placebo group ( % vs. %). conclusions in this small rct, infants with hie who received high-dose epo+ht had less brain injury on neo- natal mri compared to those who received ht alone. a large efficacy trial is needed to determine whether epo further improves long-term neurodevelopmental outcomes in hie abstract table epo (n= ) placebo (n= ) p value severe encephalopathy % % . in hospital mortality ( %) ( %) . month widea . (sd . ) . (sd . ) . mri–normal ( %) ( %) . mri–mild injury ( %) ( %) mri–moderate injury ( %) ( %) mri–severe injury ( %) ( %) j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ decreased risk of cerebellar hemorrhage in premature newborns exposed to antenatal magnesium sulfate d gano, m ho, hc glass, d xu, aj barkovich, , d ferriero . ucsf, san francisco, ca; ucsf, san francisco, ca . /jim-d- - . purpose of study cerebellar hemorrhage (cbh) is now gaining recognition as a common form of brain injury in premature newborns. our objective was to determine the clinical predictors of cbh in a prospective cohort of pre- mature newborns evaluated with magnetic resonance imaging (mri). methods used a cohort of preterm newborns (< wks gestation) imaged with t mri soon after birth ( – ) was studied. exclusion criteria included clin- ical evidence of a congenital syndrome, congenital infec- tion, or clinical status too unstable for transport to mri. a pediatric neuroradiologist scored axial t -weighted and iron-susceptibility sequences for the presence of cbh blinded to the clinical history. medical records were reviewed for clinical predictors of cbh blinded to mri findings. clinical predictors were compared between new- borns with cbh and those without using descriptive statis- tics. predictors associated with cbh (p< . ) were evaluated in a multivariable logistic regression model. summary of results cbh was present in / ( . %) infants imaged with mri soon after birth. newborns with cbh were younger at birth (mean . ± . wks vs. . ± . wks, p= . ), and of lower birth weight (median grams, iqr – vs. , iqr – , p= . ). cbh was significantly associated with antenatal magnesium sulfate exposure (rr . , % ci . – . , p= . ), hypotension (rr . , % ci . – . , p= . ), patent ductus arteriosus (rr . , % ci . – . , p= . ) and mechanical ventilation ≥ days (rr . , % ci . – . , p= . ). maternal factors and mode of delivery were not associated with cbh. adjusting for predictors associated with cbh and postnatal age at mri, antenatal magnesium sulfate was independently associated with decreased cbh (or . , % ci . – . , p= . ). conclusions the rate of cbh in our cohort is higher com- pared to other studies, suggesting t mri may be more sen- sitive for the detection of cbh in premature newborns. antenatal magnesium sulfate exposure is independently asso- ciated with a decreased risk of mri-detected cbh, which may help explain the reason underlying the neuroprotective effects of magnesium sulfate in premature newborns. acknowledgements: nih/ninds ns and eb . measuring calprotectin in stool as part of the “rule out necrotizing enterocolitis” evaluation b macqueen, r christensen, d lambert, v baer, m sheffield, c yost, e gerday, r schlaberg, j lowe, j shepard, m cody . university of utah, salt lake city, ut; intermountain healthcare, salt lake city, ut; arup laboratories, salt lake city, ut; university of utah, salt lake city, ut . /jim-d- - . purpose of study calprotectin is an antimicrobial protein complex constituting about % of the soluble cytosolic proteins of granulocytes. an elevated level of calprotectin in stool is a marker of inflammatory bowel disease. several reports show elevated stool levels of calprotectin from neo- nates with necrotizing enterocolitis (nec). our present study is the first to determine whether a fecal calprotectin level at the onset of signs concerning for nec differenti- ates between those who have nec vs. those who have a benign feeding intolerance. we also sought to define the source of calprotectin in the intestine of neonates with nec. methods used neonates were eligible for this prospective study when an x-ray was ordered to “rule out nec”. calprotectin was quantified in stool at that time and in a follow-up stool. about one week later, each “rule out nec” episode was categorized as having been due to nec or not due to nec. immunohistochemistry of bowel excised from neonates with nec was used to determine the microscopic location of calprotectin. summary of results of episodes of “rule-out nec”, turned out to be nec and were not nec. the with nec had much higher first-stool calprotectin levels (median mg/g stool vs. mg/g stool, p< . ). those with nec also had higher second-stool calprotectin ( mg/g stool vs. mg/g, p< . ). as an early identi- fier of nec, calprotectin performed better than an abnor- mal neutrophil count, immature to total neutrophil ratio, or platelet count. calprotectin in bowel excised from neo- nates with nec was associated with neutrophil extracellu- lar traps (nets) from activated neutrophils. conclusions at the onset of suspicion for nec, a high stool calprotectin may help distinguish nec from less per- nicious forms of feeding intolerance. calprotectin in stools of neonates with nec is derived from activated neutrophils migrating to the bowel mucosa and lumen and exporting antimicrobial calprotectin by way of netosis. outcomes of extremely low birth weight infants with transient hyperglycemia treated with insulin k barseghyan, r ramanathan, l barton, r cayabyab. lac+usc, los angeles, ca . /jim-d- - . purpose of study transient hyperglycemia is common ( – %) among extremely birth weight (elbw) infants in the first few weeks of life. increased risks for death and morbidities have been reported in elbw neonates who develop hyperglycemia. the purpose of this study was to assess the short-term outcomes of elbw neonates treated with insulin for transient hyperglycemia. methods used retrospective review of electronic medical records of elbw neonates admitted to the neonatal inten- sive care unit at lac+usc medical center from july to october without hyperglycemia and with hyper- glycemia treated with insulin. maternal and neonatal demo- graphics and short-term outcomes were extracted from the database. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ summary of results a total of infants were included in the study. there were infants with hyperglycemia treated with insulin and without hyperglycemia. there was a statistically significant difference in birth weight (bw), gestational age (ga) and need for advance resuscita- tion at birth in elbw neonates treated with insulin. these infants had a higher rate of severe retinopathy of prematurity (rop) and bronchopulmonary dysplasia (bpd) (table ). there were four patients ( . %) who developed hypoglycemia during insulin infusion and were given dextrose boluses. conclusions elbw neonates who developed hypergly- cemia and were treated with insulin were smaller and more immature. despite a difference in ga and bw, elbw infants treated with insulin for hyperglycemia had the same rate of mortality and severe ivh but had a higher rate of bpd and severe rop than preterm infants without hyper- glycemia. identification of neonatal hemolysis in the well baby nursery s srinivas, me castillo cuadrado, rj wong, dk stevenson, vk bhutani. stanford university school of medicine, stanford, ca . /jim-d- - . purpose of study covert hemolysis can increase total bili- rubin (tb) levels in otherwise healthy newborns. studies have shown that pre-discharge measurements of tb together with end tidal breath carbon monoxide (co), cor- rected for inhaled co (etcoc), can be used as an index of increased bilirubin loads due to hemolysis. we recently reported that a newly developed, point-of-care co monitor (cosense, capnia, ca) detects etcoc (precision ± . ppm), which strongly correlated to measurements of carboxyhemoglobin. here, our aim was to establish etcoc ranges adjusted to risk for hyperbilirubinemia in healthy infants. methods used term and late-preterm healthy infants (n= ) from the well baby nursery were enrolled between h and d of age. serial etcoc (≤ timepoints) were made concurrently with clinical tb determinations from each subject until discharge. etcoc values were stratified by postnatal age (pa) epochs to establish etcoc ranges. hyperbilirubinemia risk by etcoc was then assessed by plotting associated tb on the bhutani nomogram. summary of results stratification of etcoc by pa epochs ( – , – , – , > h) were: ( . , . , . – . ), ( . , . , . – . ), ( . , . , . – . ), and ( . , . , . – . ), respectively. etcoc stratified to tb risk groups showed that infants with etcoc: ≥ . are at the highest risk; between . and . are at moderate risk, and ≤ . are at the lowest risk (table ). risk due to hemolysis as detected by etcoc alone is not independent (chi square= . , p< . ) and, by deduction, may be due to delayed bilirubin elimination. conclusions combined measures of etcoc and tb can accurately identify the pathologic basis of hyperbilirubine- mia and guide clinical management. bilirubin production clearly influences the degree of hyperbilirubinemia. thus, infants with high etcoc are at most risk and closely moni- tored. infants with high tb but low etcoc should be eval- uated for delayed bilirubin elimination. the remainder should be followed clinically for other unpredictable risks, such as g pd deficiency. non-invasive ventilation and the effect on intubation in newborns with respiratory distress syndrome: a population based study t chavez, a lakshmanan, np iyer, t stavroudis, a garingo, ps friedlich, r ramanathan. center for fetal and neonatal medicine, division of neonatal medicine, children’s hospital los angeles and lac+usc medical center, keck school of medicine, university of southern california, los angeles, ca . /jim-d- - . purpose of study the use of non-invasive ventilation (niv) has increased in newborns with respiratory distress syndrome (rds). however, there is limited information about the association between niv and subsequent abstract table maternal and neonatal demographics and outcomes insulin n= non-insulin n= p- value birth weight, g* ± ± < . gestational age, wks.* . ± . ± . < . chorioamnionitis–n (%) ( . ) ( ) . pih–n (%) ( . ) ( . ) . antenatal steroids–n. (%) ( . ) ( . ) . advanced resuscitation atbirth–n. (%) ( . ) ( . ) . vaginal delivery–n (%) ( . ) ( . ) . mortality–n (%) ( . ) ( . ) . severe ivh–n (%) ( . ) ( . ) . severe rop–n (%) ( . ) ( . ) < . bpd–n (%) ( . ) ( . ) . *mean±sd. abstract table risk on tb nomogram etcoc (ppm; median; iqr) etcoc < . . ≤ etcoc ≤ . . < etcoc < . etcoc > . tb< th %tile (n= ) etcoc ( . ; . – . ) ( %) ( %) ( %) ( %) tb= th to th % tile (n= ) etcoc ( . ; . – . ) ( %) ( %) ( %) ( %) tb> ≤ th %tile (n= ) etcoc ( . ; . – . ) ( %) ( %) ( %) ( %) tb> th %tile (n= ) etcoc ( . ; . – . ) ( %) ( %) ( %) ( %) total (n= ) ( %) ( %) ( %) ( %) j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ intubation and resource utilization. therefore, the objec- tives of this study are to: ( ) to describe the frequency of niv and intubation in newborns with rds from to ; ( ) to identify predictors of intubation, length of stay (los) and charges. methods used data was obtained from the california office of statewide health planning and development (oshpd) birth cohort file for the years to . procedure and diagnosis codes were identified using icd- -cm codes. bivariate analysis was used to describe differences between cohorts. multivariable (mv) analysis was used to determine predictors of intubation and los. summary of results a total of , , newborns were identified from to . of these, , patients were identified with rds; . % of patients received niv; . % were intubated. on mv analysis, after adjusting for insurance, sex, gestational age (ga), and ethnicity, use of niv was not associated with an increase in intubation for infants > weeks ga, aor ( % ci), . ( . – . ). use of niv was associated with shorter los ( % ci): ( . , . ) vs. ( . , . ) days for intubated infants. use of niv decreased charges ($/ k) ( % ci) by . ( . , . ) vs. . ( . , . ) for intubated infants. comparing niv patients to intubated patients, there was a statistically significantly lower frequency (%) of sepsis ( . vs . ), patent ductus arteriosus ( . vs . ), hypoten- sion ( . vs . ), and chest tube placement ( . vs . ). conclusions non-invasive ventilation was effectively used without an increased need for intubation among infants > weeks ga. niv use was associated with less morbid- ities. furthermore, niv was associated with shorter los and charges. impact of extracorporeal membrane oxygenation on cerebral metabolism in the newborn brain aj reitman, , ps friedlich, j stein, l paquette, r chapman, md nelson, jl wisnowski, , s bluml . lac+usc medical center, keck school of medicine of usc, los angeles, ca; center for fetal and neonatal medicine, usc division of neonatal medicine, children’s hospital los angeles, los angeles, ca; children’s hospital los angeles, keck school of medicine, university of southern california, los angeles, ca; children’s hospital los angeles, keck school of medicine, university of southern california, los angeles, ca . /jim-d- - . purpose of study extracorporeal membrane oxygenation (ecmo) is an effective therapy for supporting infants with reversible cardiopulmonary failure. still, survivors are at risk for long-term neurodevelopmental impairments, the cause of which is not fully understood. to address this, we used magnetic resonance spectroscopy ( h-mrs) to inves- tigate the effects of venoarterial (va) and venovenous (vv) ecmo on cerebral metabolism. methods used neonates who received ecmo between january and december were screened from medical records. we excluded neonates with comorbid con- ditions that could independently affect the developing brain. neonates treated with ecmo for meconium aspiration syndrome, congenital diaphragmatic hernia or persistent pulmonary hypertension were identified and con- trasted with age-matched neonates from our h-mrs database. all h-mrs data were acquired from standar- dized grey matter (gm) and white matter (wm) regions of interest using a short-echo (te= ms) point-resolved spectroscopy (press) sequence and quantitated using lcmodel. metabolite concentrations (mmol/kg) were com- pared across groups using multivariate analysis of covari- ance (mancova). summary of results elevated creatine (p= . ) and choline (p= . ) concentrations were observed in the gm among neonates treated with ecmo relative to the reference group. likewise, choline concentrations were ele- vated in the wm (p= . ) while glutamate was reduced (p= . ). contrasts between ecmo groups revealed lower osmolite concentrations (e.g. myoinositol) among the vv ecmo group. conclusions neonates who underwent ecmo were found to have an abnormal cerebral metabolic profile, with the pattern of abnormalities suggestive of an underlying inflammatory process. additionally, neonates who under- went vv ecmo had low osmolite concentrations of cere- bral osmolites, as seen in vasogenic edema. nephrology and hypertension concurrent session : pm friday, january , assessment of urine protein dipstick and protein/creatinine ratio as diagnostic tests in childhood nephrotic syndrome a sanchez, d matsell, l wang, m catapang, nm polderman, a roshan, c mammen . university of british columbia, vancouver, bc, canada; british columbia children’s hospital, vancouver, bc, canada . /jim-d- - . purpose of study current guidelines recommend the use of urine protein dipstick (upd) or protein creatinine ratio (pcr) as diagnostic tools in childhood nephrotic syndrome (ns). our recent clinical observations and previous evi- dence in adults suggests that pcr may overestimate protein excretion in dilute urine samples. this study aimed to assess the agreement between upd and pcr in defining ns diagnosis/relapse and remission considering urine con- certation. methods used data was retrospectively obtained from electronic health records of ns patients followed at british columbia children’s hospital. paired laboratory upd and pcr results from patients between march & august were analyzed. recommended cut-offs for ns diagnosis/relapse and remission were tested in dilute and concentrated urine samples as measured by urine specific gravity (< . vs > . ). kappa statistic was used to measure agreement between upd and pcr along with % confidence intervals ( % ci). summary of results a total of urine samples from children were obtained. using pcr ≥ mg/mmol and upd ≥ + as cut-offs for ns diagnosis/relapse, there was a substantial discordance in the most dilute (kappa . , j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ % ci: . – . ) compared to most concentrated samples (kappa . , % ci: . – . ). using pcr < mg/mmol and urine dipstick < + as cut-offs for ns remission, there was also a difference in the agreement between the most dilute (kappa . , % ci: . – . ) and concentrated (kappa . , % ci: . – . ) samples. mean urine creatinine concentrations were significantly lower in the most dilute vs concentrated samples ( . vs . mmol/l respectively, p= ). conclusions considerably lower agreement of upd and pcr in dilute urine samples was observed in defining ns diagnosis/relapse and remission. pcr may overestimate protein excretion due to low urine creatinine concentra- tions seen in dilute urine.overestimation of proteinuria in children with ns can have several diagnostic, treatment, and prognostic implications. we suggest that urine pcr should be performed in concentrated urine, such as first am samples, in order to avoid some of these issues. physical activity and metabolic health in chronic kidney disease we bowlby, , l zelnick, c robinson-cohen, ih deboer . university of washington, seattle, wa; institute of translational health sciences, seattle, wa . /jim-d- - . purpose of study people with chronic kidney disease (ckd) are at high risks of progressing to end stage renal disease and cardiovascular disease. poor metabolic health may be a modifiable risk factor for these adverse outcomes. we examined the associations physical activity has on key metabolic health factors in subjects with moderate-severe non-diabetic ckd by using gold standards of measure- ment. methods used we performed a cross-sectional study of people, with ckd(egfr< ml/min/ . m ) and healthy control subjects. physical activity was measured by acceleormetry over a seven day period, insulin sensitivity by the hyperinsulinemic-euglycemic clamp method, and fat mass by dxa. we also measured blood pressure, serum lipids, and serum high sensitivity c-reactive protein. we tested associations of physical activity with these metabolic outcomes using multivariable linear regression, adjusting for possible confounding factors including demographics, comorbidities, and medication use. summary of results subjects with ckd were less active than control subjects, had lower insulin sensitivity . ( . ) versus . ,( . (mg/min)/(mu/ml)), higher fat mass ( . ) versus . ( . kg), and higher triglycerides . ( . ) versus . ( . mg/dl). physical activity was posi- tively correlated with insulin sensitivity and negatively cor- related with fat mass and triglycerides. with adjustment, each two-fold higher level of physical activity was asso- ciated with a . (mg/min)/(mu/ml) higher insulin sensitiv- ity ( % ci . , . , p= . ), an . kg lower fat mass (– . ,– . , p= . ), and a . mg/dl lower triglyceride concentration (– . ,– . , p= . ). associations of phys- ical activity with insulin sensitivity and triglycerides did not differ significantly among subjects with and without ckd (p-values for interaction > . ), while the association of physical activity with fat mass appeared weaker with ckd (p-value for interaction= . ). conclusions greater physical activity may promote meta- bolic health for patients with moderate-severe ckd. insulin sensitivity, adiposity, and dyslipidemia are logical intermediate targets for short-term physical activity trials that assess what types of physical activity may best promote metabolic health in ckd. renal outcomes in pediatric anti-neutrophil cytoplasmic antibody associated vasculitis – a pediatric vasculitis initiative (pedvas) study a chen, c mammen, d cabral, k morishita . university of british columbia, vancouver, bc, canada; bc children’s hospital, vancouver, bc, canada . /jim-d- - . purpose of study renal disease is the most common com- plication affecting patients with anca-associated vasculitis (aav). however, renal outcomes have not been well described in affected children with aav. we aimed to describe the month renal disease course and outcome of pediatric aav patients presenting with renal disease. methods used patients extracted from a registry of childhood vasculitis (archive) - with contributions from international sites - were included if diagnosed with aav < years of age and had either biopsy-proven pauci-immune glomerulonephritis or decreased renal func- tion requiring dialysis. patients’ renal findings and investiga- tions were examined at presentation and months. glomerular filtration rate (gfr), estimated using the schwartz equation, was used to stratify renal outcomes according to the proportion of children with normal gfr (> ml/min/ . m ), moderately reduced (mr) gfr ( – ml/min/ . m ), severely reduced (sr) gfr ( – ml/min/ . m ) and renal failure (< ml/min/ . m ). summary of results of the included patients, % were female, % were caucasian, and % had granulomatosis with polyangiitis. initial gfr of the patients with creatinine data at presentation were: renal failure ( %, n= ), sr-gfr ( %, n= ), mr-gfr ( %, n= ) and normal gfr ( %, n= ). at presenta- tion, renal findings of the patients include hypertension ( %), oliguria ( %), nephrotic syndrome ( %) and; % required acute dialysis. at months, % of those requiring dialysis at presentation either remained on chronic dialysis (n= ) or received a kidney transplant (n= ); %, % and % had normal, moderately reduced or severely reduced gfr respectively. conclusions early renal disease in pediatric aav is often severe with over % of patients presenting with a gfr< ml/min/ . m and % of patients requiring acute dialysis. even though a number of patients improved after induction therapy, the -month renal outcomes are still generally poor with only % of patients achieving a normal gfr, and % with renal failure at months. future analysis from archive will allow us to better explore predictors of long term outcomes including demo- graphics, treatment regimens, and biopsy classifications. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ complement inhibition for prevention and treatment of antibody-mediated rejection sc jordan, j choi, a vo. cedars-sinai medical center, los angeles, ca . /jim-d- - . purpose of study antibody-mediated rejection (abmr) of renal allografts represents a significant and often serious complication of transplantation in sensitized patients. recent data suggest that antibody-mediated activation of the complement system plays a significant role in mediation of abmr. here we report on the utility of two novel com- plement inhibitors (eculizumab, anti-c ) and c esterase inhibitor (c inh) for prevention and treatment of abmr. methods used therapeutic interventions aimed at the human complement system are recognized as potentially important strategies for the treatment of inflammatory and autoimmune diseases as there is often evidence of complement-mediated injury by pathologic assessments. currently, there are two approved drugs aimed at inhibition of complement activation. here we review data from con- trolled clinical trials that assess the importance of comple- ment innibition in prevention and treatment of ambr. summary of results eculizumab (anti-c , alexion, cheshire ct) which is approved for the treatment of par- oxysmal nocturnal hemoglobinuria and atypical hemolytic uremic syndrome. eculizumab has also been studied in human transplantation, for treatment and prevention of antibody-mediated rejection. initial data from uncontrolled studies suggested a significant benefit of eculizumab for prevention of antibody-mediated rejection i, but a subse- quent randomized placebo controlled trial failed to meet its primary end point. anecdotal data, primarily from case studies does show benefits in treating complement- mediated abmr. a second approved complement- inhibiting therapy is c -inh, which. is approved for use in patients with hereditary angioedema, a condition caused by mutations in the gene which codes for c -inh. a recent placebo controlled trial of c -inh for prevention of abmr in hla sensitized patients showed the drug to be safe with evidence for inhibition of systemic complement activation and complement-activating donor-specific anti- bodies (dsas). conclusions complement inibition appears to be a useful approach for prevention and treatment of abmr. early agressive abmr is always associated with complement acti- vation as detected by c d depositon and has a very poor prognosis. here, complement inhibition has offered hope for reversal of abmr episodes not seen with any other agents. nf-kb transcriptional inhibition ameliorates cisplatin-induced acute kidney injury (aki) c edelstein, a ozkok, q wang, d ljubanovic, k ravichandran . univ colorado denver, aurora, co; univ hospital dubrava, zagreb, croatia . /jim-d- - . purpose of study the nf-kb signaling pathway is import- ant in inflammation and cell survival. inflammation and cell death in the kidney are features of cisplatin-induced aki. it is known that cisplatin induces nf-kb signaling in the kidney. the purpose of the study was to determine the nf-kb responsive genes and the effect of direct nf-kb transcriptional inhibition in cisplatin-induced aki. methods used mice injected with cisplatin, mg/kg, developed aki, acute tubular necrosis (atn) and apoptosis on day . mice were treated with jsh- ( or mg/kg) which directly affects nf-κb transcriptional activity. summary of results kidney function, tubular injury (atn, serum neutrophil gelatinase-associated lipocalin [ngal], but not apoptosis) and myeloperoxidase (mpo) activity were significantly improved by jsh- ( mg/kg). sixty one nf-kb responsive genes were increased by cis- platin of which genes were decreased by jsh- . genes that were decreased by jsh- that are known to play a role in cisplatin-induced aki were il- , ifn-γ, the che- mokine ccl and caspase- . another gene, caspase recruitment domain family, member (card ), not previously known to play a role in aki, was increased more than -fold and completely inhibited by jsh- . cxcl and tnf-α, known mediators of cisplatin-indued aki, were decreased by jsh- . necroptosis, a form of programmed necrosis, mediated by receptor interacting- protein kinases (ripks), has been shown to be a mechan- ism of proximal tubular cell death. there was an increase in ripk and , receptor-interacting serine/threonine- protein kinases, that play an important role in necroptosis, in cisplatin-induced aki. in novel data, it is demonstrated that nf-kb transcriptional inhibition with jsh- results in a significant decrease in ripk and ripk suggesting that nf-kb activates ripk and ripk in cisplatin-induced aki. in mouse proximal tubule cells in culture, jsh- resulted in an increase in apoptosis sug- gesting that the mechanism of protection against aki by jsh- is not due to a direct effect on proximal tubules. conclusions nf-kb transcriptional inhibition in cisplatin-induced aki ameliorates kidney function and atn without a significant effect on apoptosis and is asso- ciated with a decrease pro-inflammatory mediators, card and ripks. dying mitochondria: reduction of mitochondrial proteins in progressive kidney disease y aghajan, m darshi, s miyamoto, k sharma. uc san diego, san diego, ca . /jim-d- - . purpose of study chronic kidney disease affects more than % of people in developed nations. our lab has studied the metabolomics of diabetic chronic kidney disease and found that of differentially expressed urine metabolites, were linked to mitochondrial function and indicated reduction of mitochondrial function. we hypothesized that mitochondrial proteins were reduced in a model of progressive renal failure, the alport col a -/- mouse. methods used total protein was isolated from kidney cor- texes. to evaluate regulation of mitochondria i measured the levels of the following proteins that are linked to j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ mitochondrial biogenesis or the electron transport chain via western blot: pgc -a, complex i subunits ndufs , ndufs , and ndufb , complex iii subunit uqcrc , complex iv cox ii, and complex v subunit alpha (atp synthase), mitofilin, and cox iv. western blot results were quantified by imagej software and standardized against b-actin loading control. the ratios of protein of interest to b-actin were statistically analyzed via unpaired t-test com- paring day old wild-type to day old alport mice. summary of results all of the proteins measured were sig- nificantly reduced (p=< . ) in the diseased kidney of the alport mouse (n= ). these data suggest that there is a pro- found loss of mitochondrial proteins with progressive renal failure. conclusions we saw a dramatic reduction in mitochon- drial proteins in the alport model of progressive kidney disease. these findings indicate increased mitochondrial death, or decreased mitochondrial biogenesis. there is a strong association between progressive renal failure and mitochondrial dysfunction. neuroscience ii concurrent session : pm friday, january , the role of diacylglycerol lipase in the testosterone-induced enhancement of retrograde endocannabinoid signaling in excitatory inputs to anorexigenic pro-opiomelanocortin neurons jl goethel, e wagner. western university of health sciences, pomona, ca . /jim-d- - . purpose of study anorexigenic pro-opiomelanocortin (pomc) neurons in the hypothalamic arcuate nucleus play an integral role in eliciting satiety. testosterone augments feeding behavior by enhancing endocannabinoid tone onto pomc neurons. this results in inhibition of neural trans- mission via depolarization-induced suppression of excita- tion (dse). -arachidonylgylcerol ( -ag) is an endogenous agonist of cannabinoid cb receptors synthesized by the diacylglycerol lipase (dagl) enzyme. we therefore tested the hypothesis that testosterone upregulates dagl activity in pomc neurons to enhance endocannabinoid-mediated dse. methods used male guinea pigs were orchidectomized – days prior to experimentation and injected with testoster- one propionate (tp; mg; s.c.) or its sesame oil vehicle ( . ml; s.c.) hours prior. subjects were decapitated, the brain rapidly dissected, and mm-thick slices through the hypothalamus were cut using a vibratome. whole cell patch clamp recordings were performed using biocytin- filled electrodes. perfusion of the dagl inhibitor, orlistat ( mm), or its dmso vehicle began minutes prior to recording baseline spontaneous excitatory post-synaptic current (sepsc) activity, and continued throughout record- ings. after baseline recording, -mv depolarizing pulses ( seconds in duration) were delivered from a holding potential of – mv every seconds for trials. the data were analyzed by organizing the post-stimulation amp- litude and frequency into -second bins over seconds. dse measurements were normalized as a percentage of baseline frequency and amplitude. after electrophysio- logical recording, slices were processed for immunohisto- fluorescence to confirm pomc phenotype. summary of results tp significantly potentiated endocannabinoid-mediated dse, as manifested by pro- longed increases in sepsc frequency and amplitude com- pared to recordings from vehicle-treated controls. pretreatment with the dagl inhibitor blocked both the dse observed in vehicle-treated animals, and the more per- vasive dse in tp-treated animals. conclusions these results demonstrate that testosterone-induced enhancement of dse in anorexigenic pomc neurons is dependent upon upregulated biosyn- thesis of the endocannabinoid -ag. androgens rapidly potentiate retrograde endocannabinoid-mediated inhibition of anorexigenic pomc neurons d fischer, e wagner. western university of health sciences, pomona, ca . /jim-d- - . purpose of study the purpose of our study was to deter- mine whether androgens could rapidly augment endocan- nabinoid tone and thus retrograde inhibition of excitatory input onto anorexigenic proopiomelanocortin (pomc) neurons by a process known as depolarization-induced sup- pression of excitation (dse). in doing so, we hoped to identify the mechanisms by which androgens and endocan- nabinoids interact to regulate the hypothalamic feeding cir- cuitry in order to further understand the pathology of obesity and related chronic disease. we hypothesized that androgens increase energy intake in male guinea pigs by rapidly enhancing the inhibitory effect of endocannabi- noids on appetite-suppressing pomc neurons. methods used we used male topeka guinea pigs castrated – days prior to experimentation as subjects, and pre- pared mm-thick coronal slices through the hypothal- amus. using whole-cell patch clamp recordings, we first measured baseline levels of spontaneous excitatory post- synaptic currents (sepscs) from a holding potential of – mv in slices treated with the dihydrotestosterone mimetic, cl- as- ( nm), or its ethanol vehicle prior to delivering a -mv depolarizing stimulus ( seconds in abstract figure j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ duration) every seconds over trials. we then quanti- fied the dse-induced changes in sepsc frequency and amplitude observed over four consecutive, -second bins beginning immediately after termination of the depolariz- ing stimulus. post-hoc cell identification was accomplished using various phenotypic markers for pomc neurons (i.e., β-endorphin, α-melanocyte-stimulating hormone, cocaine-amphetamine-regulated transcript) and fluores- cence immunohistochemistry. summary of results we found that cl- as- ( nm) significantly potentiated endocannabinoid-mediated dse in pomc neurons, as manifested by more pronounced and prolonged reductions in sepsc frequency and amplitude compared to those seen in vehicle-treated controls. conclusions our results support our hypothesis that androgens rapidly enhance retrograde, endocannabinoid- mediated inhibition of excitatory input impinging on anor- exigenic pomc neurons. as such, they provide meaningful insight into the androgenic regulation of energy balance. the role of diacylglycerol lipase in the androgenic regulation of energy homeostasis r propst, e wagner. western university of health sciences, ontario, ca . /jim-d- - . purpose of study energy balance is regulated in large part through hormone-controlled mechanisms occurring within the hypothalamic feeding circuitry. both synthetic and naturally-occurring cannabinoids have been demonstrated to initiate hyperphagia via inhibition of presynaptic neuro- transmitter release on anorexigenic pro-opiomelanocortic (pomc) neurons in the hypothalamic arcuate nucleus. testosterone has been shown to activate amp-dependent kinase (ampk), which then augments retrograde endocan- nabinoid signaling at excitatory inputs impinging on the pomc neuron. this could be attributed to increased bio- synthesis due to up-regulated enzymes like diacylglycerol lipase (dagl) which produces the appetite-stimulating endocannabinoid -arachidonoylglycerol ( -ag) from dia- cylglycerol. the purpose of this study was to elucidate if testosterone up-regulates dagl in the arc, thereby increasing energy intake and expenditure. methods used male topeka guinea pigs underwent two surgical procedures. the first involved a stereotaxic guide cannula implantation into the third ventricle days prior to experimentation. after a five-day recovery, orchidecto- mies were performed seven days prior to experimentation. after a three-day acclimation period, the behavioral study was initiated in which energy intake, meal pattern, o con- sumption, co output, and metabolic heat were measured around the clock over a five-days. during this period the animals were treated every day at : with either the dagl inhibitor orlistat ( mg;i. .v) or its cremephor/ ethanol/ . % saline vehicle ( / / ; v/v/v; ml; i. .v), and every other day with testosterone propionate (tp; mg; s.c.) or its sesame oil vehicle ( . ml; s.c.). the energy intake and expenditure data were collected via oxymax software for later analysis. summary of results increased energy intake, meal size, as well as o consumption, co output, and metabolic heat production. these effects were markedly diminished by orlistat. conclusions these data show that the androgen-induced changes in energy homeostasis and meal pattern and involve increased expression of dagl, and hence augmen- ted endocannabinoid tone within the hypothalamic feeding circuitry. calpain- and protein tyrosine phosphatase non-receptor type colocalization in hippocampus of adult wildtype mice a kamgar-parsi, m baudry, y wang . western university of health sciences, pomona, ca; western university of health sciences, pomona, ca . /jim-d- - . purpose of study this study looked at interactions between calcium-dependent thiol-protease calpain- and protein tyrosine phosphatase non-receptor type (ptpn ). a previous study found that ptpn ’s pdz domain had a high binding activity with calpain- ’s c- terminus, which has its own pdz binding domain. the ca region of the hippocampus was assessed, where both proteins are expressed. ptpn and calpain- regulate cell growth, differentiation, and apoptosis, but whether they interact together to carry out these functions remains unknown. such interaction could explain neurodegenera- tive disease mechanism, and thus elucidate new target ther- apies. methods used whole brain dissected from adult c bl / j mice were fixed following cardiac perfusion of pfa, and prepared as frozen sections. sections were washed, blocked, and separated into two groups: the experimental group (calpain- /ptpn ) and the control group (calpain- /ptpn ). calpain- was used as a control because its c-terminal does not interact with ptpn ’s pdz binding domain. sections were incubated in their respective primary and secondary antibodies, and then mounted onto slides with dapi and visualized with a con- focal microscope. imagej jacop plugin was used to quan- tify the co-localization using pearson’s correlation coefficient. prism unpaired t-test tested for significance of the pearson’s coefficient averages between calpain- / ptpn and calpain- /ptpn co-staining. summary of results calpain- and ptpn were found to have a signficiantly higher colocalization in the ca region of adult wildtype mice hippocampi than calpain- and ptpn . this was evident from calpain- and ptpn ’s higher average pearson’s coefficient versus the average pearson’s coefficient of calpain- and ptpn . conclusions there was a strong correlation of colocaliza- tion and thus interaction found between ptpn and calpain- in the ca hippocampal region. co-ips, western blots, and hippocampal neuronal staining are being done to confirm this. hopefully this potential interaction will be better understood to optimize possible therapies for neuro- degenerative diseases. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ in utero hypoxia-ischemia and lipopolysaccharide administration in rats induces deficits in cognition evaluated using a novel touchscreen platform l chan, , s robinson, l jantzie . university of new mexico, albuquerque, nm; boston children’s hospital & harvard medical school, boston, ma . /jim-d- - . purpose of study preterm infants are prone to numerous neurological deficits including cerebral palsy, epilepsy and intellectual disability. among the most impactful, cognitive deficits pose a significant barrier to achieving independent adult living. touchscreen testing is similar to the cambridge neuropsychological test automated battery (cantab) in humans, and is a novel paradigm for asses- sing cognition in rodents following brain injury. we hypothesized that our established model of in utero injury would induce deficits in learning and memory in young adult rats as measured on a touchscreen platform. methods used on embryonic day (e ) a laparotomy was performed on sprague-dawley rats under anesthesia, with transient ( hr) uterine artery occlusion (tshi). lipopolysaccharide (lps, . g/sac) was then injected into each amniotic sac and laparotomy was closed. sham animals received a laparotomy only. rats were born at term, and began operant conditioning training on postnatal day after mild food restriction. animals were then trained on the touchscreen platform and following success- ful completion of training, performed a visual discrimin- ation (vd) task (n= /group). summary of results tshi+lps rats are capable of suc- cessfully completing training and vd paradigms. notably, tshi+lps rats have significantly longer latency to para- digm learning (fisher’s exact test, p= . ) and log signifi- cantly fewer correct responses in the first five days of vd than sham rats. to more specifically examine the rate of learning, trajectories of mean correct response were plotted and revealed that during testing days to , tshi+lps rats show a markedly lower proportion of correct responses than shams (mixed anova p= . ). conclusions using a touchscreen operant platform to assess specific cognitive domains, we show that tshi+lps rats have significant impairment in visual discrimination, the first time to our knowledge this deficit has been reported using touchscreen platforms in a model of peri- natal brain injury. further testing with this platform will allow dissection of deficits in distinct pillars of cognition following in utero injury and in response to emergency therapeutic strategies for preterm infants. infantile traumatic brain injury is mitigated by erythropoietin treatment in a preclinical rodent model l chan, , j denson, j winer, j maxwell, s robinson, l jantzie . university of new mexico, albuquerque, nm; boston children’s hospital & harvard medical school, boston, ma . /jim-d- - . purpose of study traumatic brain injury (tbi) is the leading cause of death and severe morbidity for infants born healthy. however, despite the pervasiveness of severe, chronic diffuse brain injury, no targeted treatment currently exists to actively promote recovery. we developed a preclin- ical model of infantile tbi in rats to examine neuroradiolo- gical outcome following injury and putative efficacy of the neuro-repairative agent erythropoietin (epo) for this vul- nerable patient population. methods used anesthetized postnatal day (p ) rats underwent left parietal craniectomy and . mm controlled cortical impact (cci). sham animals underwent anesthesia with scalp incision only. injured animals received doses of erythropoietin (epo) u/kg/dose or vehicle over post-injury days – . brains and serum were collected at p for magnetic resonance imaging (mri), and serum bio- marker analysis using multi-array electrochemiluminescence (meci). summary of results diffusion tensor mri of the ipsilat- eral and contralateral cortex and white matter in cci-veh rats showed widespread injury and significant abnormalities of functional anisotropy (fa), mean diffusivity (md), axial diffusivity (ad) and radial diffusivity (rd). treatment with epo reversed changes in md, ad and rd. serum analyses reveal a peripheral pro-inflammatory signature of cci injury defined by anomalous increases in cxcl . notably, in addition to mitigating injury observed on mri, treat- ment with epo normalized cxcl in cci animals. conclusions in our model of infantile moderate to severe tbi, injured animals demonstrated diffuse white matter and gray matter injury that was repaired with epo treat- ment in a clinically relevant dosing regimen, concomitant with improved serum biomarker profiles. further analyses of cognitive and behavioral outcomes of injury and treat- ment have the potential to inform the design of clinical trials for this at-risk patient population. oxidatively degraded mitochondrial dna is a newly identified damp family member in astrocytes, and potential trigger of alzheimer’s disease a mathew, s hushmendy. albany medical center, albany, ny . /jim-d- - . purpose of study it has been shown that mitochondrial dna can stimulate immune cells as a damp (damage asso- ciated molecular patterns) family member. here we extend our original studies to determine whether oxidant-initiated degraded mitochondrial polynucleotides (demps), are more likely to be pathophysiologically relevant than whole intact mitochondrial dna, and are able to stimulate an immune response in mouse primary astrocytes. methods used hamster fibroblast cells were cultured the mitochondrial dna purified and degraded and was trans- fected into mouse primary astrocytes using lifectamine . the cytokine analysis was performed using a cytometric bead array. then a southern blot was per- formed for hybridization of mitochindrial dna to labled probes. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ summary of results induction of proinflammatory cyto- kines il- ( -fold), mcp- ( . -fold), and tnfα ( . -fold) was observed in mouse primary astrocytes trans- fected with degraded mitochondrial dna. proinflammatory il β was induced . -fold, implicating inflammasome activation. csf and plasma was found to contain detectable demp signal indicating release of mito- chondrial dna. conclusions these studies demonstrate that degraded mitochondrial dna can elicit a proinflammatory cytokine induction in astrocytes which includes the inflammasome, and that demps are detectable in csf and plasma. these are supportive of our hypothesis that demps are a trigger of neurodegenerative diseases associated with inflammation and oxidation such as alzheimer’s. learning and memory testing in lambs s bowen, a havlicak, j beachy, m dahl, d null, b yoder, k albertine . university of utah, salt lake city, ut; cohen children’s med ctr, ny, ny; uc, davis, davis, ca . /jim-d- - . purpose of study neurodevelopmental impairment may be a long-term outcome for survivors of premature birth and invasive respiratory support. premature lambs sup- ported similarly develop diffuse brain damage. damage is evident as increased apoptosis, and decreased proliferation, of neurons and glia compared to premature lambs sup- ported by non-invasive ventilation and unventilated term lambs. the hippocampus also is damaged. because the hippocampus is damaged, learning and memory may be affected. however, before assessing learning and memory in former premature lambs, we optimized learning and memory tests for lambs. methods used ten term control lambs were tested ( group-raised; solitary-raised). each lamb had two -min trials, with rest between. the routine was repeated the next day. different tests were separated by a rest day. the first test was habituation to the room. the second test used novel objects, using conditions (two dissimilar objects; a new novel object replaced a previous object; added a third novel object). the third test used a mirror and a non- reflective surface. for these tests, the number of vocaliza- tions, time exploring, and time standing were recorded. for the novel object and reflection tests, the time to first- notice of an object, number of times the object was approached, and total time spent with an object were recorded. the fourth test was a maze, for which the reward was ewe’s milk. time to locate the reward was recorded. summary of results individually-raised lambs had mark- edly different responses to all tests and were excluded. the number of vocalizations did not decrease during habitu- ation by the group-raised lambs. time spent standing still or exploring was not different over time. lambs approached a novel object faster than a familiar object. lambs spent more time looking at the mirror than the non- reflective surface (p< . ). lambs approached the mirror slower on the first trial than the second trial (p< . ). lambs completed the first maze trial slower than the second trial (p< . ). conclusions lambs are amenable to neurodevelopmental tests of learning and memory. our data also suggest that lambs should be raised in similar conditions to ensure val- idity of test results. our next step is to test former prema- ture lambs. hl , hl . surgery iii concurrent session : pm friday, january , safety and efficacy of liposomal bupivicaine across a spectrum of plastic surgery procedures i campwala, j chidester, s gupta. loma linda university, loma linda, ca . /jim-d- - . purpose of study postoperative pain management presents significant challenges to plastic surgeons. a trial found that patients receiving postoperative anesthesia via continuous infusion pump systems used less patient-controlled anesthe- sia (pca) and transitioned earlier to oral narcotics. these pump systems are costly and involve complications such as infection, sepsis, and pump malfunction. opioids, the mainstay of pain management, are associated with nausea, vomiting, ileus, pruritus, sedation, respiratory depression, drug-dependence, and opioid-induced hyperalgesia. liposomal bupivacaine (exparel; pacira pharmaceuticals, parsippany, n.j.) is a liposomal formulation of a commonly used anesthetic agent (bupivacaine); it provides up to abstract figure j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ hours of relief with a single injection in a more controlled fashion. it has not been evaluated widely in plastic surgery. methods used we piloted local tissue infiltration in adult patients. the liposomal bupivacaine is prepared in a . % solution in ml vials, diluted per manufacture recommendations with an equivalent volume of normal saline. a total dose of mg was infiltrated into the operative field using a g needle. summary of results table outlines the procedures sup- plemented with liposomal bupivacaine infiltration. the infiltration of the drug provides no technical hurdles, and we did not note any intraoperative nor post-anesthesia care unit morbidity. anecdotally, we have noted significant sub- jective positive pain relief for patients post-operatively. conclusions we noted improved postoperative pain man- agement and the potential to reduce the length of patients’ hospital stays, early postoperative morbidity, and healthcare costs. with better pain control, post-operative complica- tions and the psychological burden of surgery decrease. an evaluation of antihistamine pre-treatment in facial injectable treatments j wendt, j chidester, s gupta. loma linda university, loma linda, ca . /jim-d- - . purpose of study aesthetic soft tissue facial augmentation using neuromodulators and dermal fillers has become a popular minimally invasive procedure in the united states. even though satisfaction rates are high, complications such as pain, edema, and erythema are encountered. anecdotal evidence suggests that oral antihistamines are effective in reducing these complications. the purpose of this pilot study was to evaluate the effectiveness of pre-treatment with topical antihistamines in reducing pain, edema, and erythema following injection of dermal filler. methods used a pilot study was performed with six women receiving bilateral dermal filler injections of the malar region, nasolabial folds, and peri-oral region. a topical cream containing benzocaine %, lidocaine %, tetracaine % (blt) compounded with diphenhydramine % was applied minutes prior to injection. to test the efficacy of the topical diphenhydramine, a split-face application was employed, with one half of the face receiv- ing the topical blt+diphenhydramine cream and the other half of the face receiving a topical cream containing only blt. photographs were taken pre-injection, minutes post-injection, and hours post-injection. summary of results both patient and the injecting clin- ician were asked to fill out separate versions of the facial edema and redness rating scale (seen below), adapted from the vancouver scar scale. a scale rating at -hours post- injection was also obtained from each patient. early results are promising but inconclusive regarding the efficacy of the topical anti-histamine cream. conclusions although anecdotal evidence suggests oral antihistamines are effective in the pre-treatment of dermal filler injections, the pilot study data is inconclusive regard- ing the efficacy of topical antihistamine cream in reducing dermal filler related redness and swelling. in order to further elucidate the efficacy of oral and topical antihista- mines and its role in soft tissue facial augmentation, add- itional studies are needed. integra flowable wound matrix and the lower extremity: implications for the reconstructive ladder c johnson, s gupta. loma linda university, loma linda, ca . /jim-d- - . introduction we report the use of integra flowable wound matrix (fwm) in the treatment of large trauma wounds to the lower extremity. integra fwm is composed of cross-linked collagen and glycosaminoglycan, a semi- liquid indicated for use in tunneling wounds. we propose the use of a “sandwich” of integra’s fwm between sheets of bilayer and monolayer wound matrix dressing with negative pressure wound therapy (npwt). to our knowl- edge, fwm has not been tested as the primary source of healing to large trauma wounds in the lower extremity. we propose the use of integra, without flaps or grafts, facilitat- ing a “reconstructive elevator”, enhancing both recovery times and outcomes through the use of more efficient methods. case a -year old female presented with traumatic dia- betic degloving, with a wound measuring cm× cm. there was not sufficient tissue to allow for local flaps, and abstract table procedure number delayed breast reconstruction with tissue expanders, bilateral serratus anterior muscle flap delayed reconstruction of bilateral breasts with breast implants under tram breast reduction cheek fasciocutaneous flap for skin cancer reconstruction finger flexor tendon tenolysis thumb cmc joint arthroplasty split thickness skin graft harvest of skin graft from right leg and skin graft to right and left axillae measuring cm abstract table facial edema and redness rating scale pigmentation (bruising) redness turgor (from edema) swelling (height) , no bruising , none , normal , normal , slight bruising , light to pink , supple , < mm , moderate bruising , pink to red , yielding , – mm , heavy bruising , red , firm , > mm , vivid red , hard j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ her risk for perioperative complications was high enough to warrant other treatment. the wound was first irrigated and debrided, followed by treatment with an integra “sand- wich” consisting of integra fwm between sheets of monolayer and bilayer wound matrix dressings. npwt was administered. two weeks after application, the volume of injury had regressed. six months later, the injury remained healed with the use of an integra “sandwich” without skin flap or graft procedures. discussion options for reconstruction have grown and are no longer linear in patient morbidity, risk factors, and com- plexity. it is not adequate to consider technical virtuosity in the absence of patient factors. the strategy for selecting the best option for the defect requires a deeper understanding of tissue biology and wound physiology. it requires clinical acumen derived from evidence-based review of patient factors that impact healing and patient safety factors that have increasingly been measured. edits to the initial recon- structive ladder have included evolving techniques, provid- ing comprehensive descriptions of technologies. the correlation of indications tempered by diagnoses and method-specific morbidities will add the needed context to techniques to guide the strategy for reconstruction of indi- vidual wounds. the optimization of patient status, wound factors and perioperative safety form the framework for the treatment goal. spider silk as a next generation suture me shapiro. university of washington, seattle, wa . /jim-d- - . purpose of study through the development of finer, stronger sutures, new medical procedures have arisen. spiders have evolved to create a silk with incredible mech- anical properties. due to their cannibalistic nature, spider silk cannot be farmed at an industrial scale. as such, methods are being developed to produce spider silk fibers synthetically. this study explored whether an aqueous system using recombinant spider silk proteins could be applied to create a stronger, finer suture. due to current innovations, spider silk has the potential to create the next generation of sutures. methods used masp and masp spider silk proteins were solubilized in water to make a dope. the dope was drawn into a ml plastic syringe and mounted on a custom wet fiber spinning system. fiber diameters were measured using a motic ba microscope with mp motic camera and analyzed on motic’s image plus . ml soft- ware. samples were mechanically tested using a mts synergie with a custom g load cell. various methods were implemented to braid fibers together. to assess knot strength, spider silk thread was looped around two metal pins mm apart and knotted with a surgeon’s knot using an instrument tie technique. summary of results using a % (weight/volume), / ratio masp /masp dope spun with a . inch inner diameter needle into a % ipa coagulation bath, / ipa/h o first stretch bath, and / ipa/h o second stretch bath, with a . × stretch ratio in both baths, fibers were produced with mechanical properties most suited for braiding and tying knots. such fibers were braided and knotted as sets of with average stress values of . mpa. these mechanical properties rival – vicryl sutures, with an average knotted stress of . mpa. conclusions through numerous trials, parameters were developed to create fibers with mechanical properties most suited for braiding and tying. throughout this process, it was observed that spider silk threads did not demonstrate the marked decrease in stress which the – vicryl sutures had when tied into a knot. when knotted, spider silk threads rival current sutures on the market, and with innovative developments in protein manufacturing, further improvements are anticipated. vaginal wall sling: pilot study outcomes and video demonstration of technique s cheriyan, j bailey, ky kim, m keheila, j shen, a staack . loma linda university medical center, loma linda, ca; loma linda university, redlands, ca . /jim-d- - . purpose of study synthetic graft material has been a staple of treatment for stress urinary incontinence (sui). benefits of mesh include its unlimited supply, consistent quality, and customizable shape and size. however, drawbacks include graft placement into the urinary tract, infection, and erosion into the urethra, bladder, or vagina. in , fda released a safety update on transvaginal mesh for treatment of pelvic organ prolapse and sui, encouraging providers and patients to discuss non-mesh options. we aim to evalu- ate patient satisfaction in patients who received an autolo- gous suburethral sling using vaginal wall tissue for the treatment of sui, as well as to demonstrate this technique with a video. methods used a retrospective review was performed on autologous vaginal wall sling procedures from may to july . a telephone survey was performed post- operatively to assess patient’s current voiding symptoms and satisfaction, measured using a likert scale ( =very dis- satisfied, =very satisfied). mann-whitney u test and fisher’s exact test were used for statistical analysis, with a p< . for significance. summary of results vaginal wall sling placement was per- formed in patients. mean age was years ( – ). mean bmi is . ( – ). mean number of vaginal deliveries (range – ). all patients concurrently underwent cystocele repair (n= ). mean sling length was . cm (range . – cm). abstract table spider silk vs. suture stress comparison sample fiber stress (st. dev.) knot stress (st. dev.) masp /masp fiber thread . mpa ( . ) . mpa ( . ) – vicryl suture . mpa ( . ) . mpa ( . ) j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ average preoperative pad usage was . /day (range – ), which decreased to . /day (range – ; p= . ). patients ( %) agreed to participate in a phone survey at a mean of days postoperatively ( – days), where ( %) reported zero pad usage, while ( %) used – pads/day and ( %) used > pads/day. patient’s mean satisfaction postop was . on the likert scale. patients with pad usage were significantly more sat- isfied than those who continued to require pads ( . vs. . ; p= . ). conclusions autologous suburethral sling using vaginal wall tissue can be an effective and well tolerated technique in patients with sui. in our cohort, patients were satisfied with the procedure, with % reporting no pad use post- operatively. our video demonstrates the technique of har- vesting and placing a suburethral sling using vaginal wall tissue. development of an implantable chitosan hemostat m dopp. loma linda university, loma linda, ca . /jim-d- - . purpose of study we wanted to develop a novel hemo- static agent that could be used to control intraoperative hemorrhages without the need for removal. there is a great need for novel hemostats because the agents used at present are costly, contain thrombin, or have significant performance issues. chitosan, a natural biopolymer is known to be an excellent hemostatic agent. however, it is only approved for using in achieving topical hemostasis due to issues with reducing pyrogen contamination. thus, we hypothesized that non-thermal nitrogen gas plasma would effectively decontaminate chitosan while preserving its hemostatic properties. we tested our hypothesis in a porcine laparoscopic partial nephrectomy model. methods used × cm pads composed of % chitosan acetate (scion cardio-vascular, inc.) were used for the study. prior to initiating the animal work, non-thermal nitrogen gas plasma was optimized for decontaminating chitosan. pads were then treated with either the optimized nitrogen gas plasma, or a standard electron beam steriliza- tion procedure. the hemostatic effectiveness of the chito- san hemostat material was tested in six pigs, with three pigs in each sterilization group. in each pig, the lower pole of the left kidney was resected and – pads were placed on the cut surface. two pigs were given a bolus of epinephrine after initial hemostasis, to challenge the hemostatic proper- ties of the chitosan. at weeks all pigs were sacrificed in order to determine the reaction to the implanted chitosan and the degree of reabsorption. summary of results we were able to achieve hemostasis rapidly by placing – pads on the surgical field. in the two pigs that received a bolus of epinephrine, we found that it took – additional pads, but hemostasis was achieved. upon autopsy we found that all six pigs had healed normally without an inflammatory response. the chitosan itself appeared to be in the process of being reab- sorbed. we theorize that had the experiment continued another few weeks there would have been no identifiable chitosan at the surgical site. conclusions chitosan is an acceptable alternative to the current surgical hemostats. it would be far cheaper to produce than alternatives such as surgical. also it is safer for human use than current hemostats that utilize human thrombin. in future studies we plan to do head to head tests to compare the efficacy of different hemostatic agents. efficacy of antegrade and retrograde warm saline perfusion during renal cryoablation for ureteral preservation a erskine, , n khater, p yang, j smith, d baldwin . loma linda university, loma linda, ca; loma linda university, loma linda, ca . /jim-d- - . purpose of study percutaneous renal cryoablation of tumors adjacent to the ureter or pelvicalyceal system risk collecting system injury due to freezing. although cold antegrade perfusion has been described for microwave and radiofrequency ablation, antegrade and retrograde warm saline perfusion for renal cryoablation has not been well characterized. the purpose of this study was to describe the safety and feasibility of antegrade and retrograde warm saline perfusion to protect the collecting system during renal cryoablation. methods used a retrospective review was performed of patients treated with percutaneous renal cryoablation at a single academic institution between and . from this series, six patients undergoing antegrade (n= ) or retrograde (n= ) warm saline perfusion for protection of the collecting system were identified. the antegrade technique was performed by perfusion of warm saline through a french catheter under continuous gravity drainage. the retrograde technique was performed using an open-ended ureteral catheter inserted into the ureter, and used to instill warm saline. follow-up consisted of con- trast enhanced cross-sectional imaging performed at – month intervals depending on tumor pathology. primary outcomes were success of urothelial preservation and tumor ablation. secondary outcomes included hospital stay, blood loss, operating time, and complication rate. summary of results four tumors were renal cell carcin- oma and two were benign. the mean distance from tumor to ureter was . cm ( . – . cm). there were two complications including one patient who suffered a urine leak at the site of the antegrade perfusion (clavien ). the second complication was a patient who suffered a pulmon- ary embolism the day following surgery (clavien ). there was no recurrence of renal tumors at a mean follow-up of . months ( – ). the mean operative time was hours and minutes. there was no statistical difference in com- plication rate in those who underwent antegrade or retro- grade perfusion (p> . ). conclusions this study demonstrates the feasibility of both methods for ureteral preservation during cryoablation. future studies could help identify the relative merits of each approach and the appropriate indications. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ an analysis of infectious risk from endoscopic valve backflow during ureteroscopy ar kutzner, j shen, s abourbih, c ritchie, d baldwin, a erskine. loma linda university, colton, ca . /jim-d- - . purpose of study visualization of the urinary tract is improved by high-pressure irrigation with saline. such irri- gation has potential to overcome the resistance of the endoscopic valve resulting in backflow. this backflow may expose surrounding personnel to blood products within the effluent. the purpose of this study is to evaluate the effluent from ureteroscopic backflow to characterize its risk for infectious transfer. methods used using a bench-top ureteroscopy model, effluent from backflow was collected following a variety of ureteroscopic tasks including normal saline irrigation alone and saline irrigation following guidewire passage, laser fiber passage, basket passage and barbotage collection. the renal model was charged with a standardized concentration ( : ) of blood to simulate bleeding encountered during routine ureteroscopy procedures. in each scenario high pressures (mean: mm hg) were generated using hand irrigation and the backflow effluent was analyzed for erythrocyte and protein content. ten trials were performed for each of the five conditions and a positive confirmation for blood or protein was equated with risk for transmission of infectious diseases. summary of results hemocytometric analysis revealed the presence of erythrocytes in no trials ( / ; %) using routine saline irrigation, irrigation following guidewire passage, irrigation following laser insertion and removal, and irrigation following basket insertion and removal. however, erythrocytes were present in / samples col- lected following barbotage. similarly, serum protein was not detected in any ( / ; %) trials of effluent collected following routine saline irrigation, irrigation following guidewire passage, and irrigation following laser fiber inser- tion and removal. however, protein was detected in a single trial ( / ; %) following basket passage and removal. protein was detected in of ( %) samples collected following simulated barbotage. conclusions the results suggest that backflow during ure- teroscopic lithotripsy including irrigation alone, irrigation following guidewire, laser or basket insertion is at very low risk for transmission of infectious diseases. in contrast backflow following barbotage collection contains both blood and protein, placing operating room personnel at risk for transmission of infectious disease. damage to polytetrafluoroethylene-coated guidewires: a potential foreign body risk al wong, a erskine, ar kutzner, s abourbih, s cheriyan, p yang, ds boskovic, d baldwin . loma linda university, loma linda, ca; loma linda university, loma linda, ca . /jim-d- - . purpose of study the polytetrafluoroethylene (ptfe)-coating of guidewires used during endourologic procedures was recently modified to avoid the bonding agent pfoa (perfluorooctanoic acid) which was felt to be carcinogenic. without this agent there is concern that the ptfe coating may become damaged during endoscopic surgical procedures running a risk of leaving a foreign body inside the patient. the purpose of this study was to examine the damage caused to guidewires following ure- teroscopy and percutaneous nephrostolithotomy to deter- mine if there was a risk of leaving ptfe flakes in the urinary collecting system. methods used changes to ptfe guidewires were were observed endoscopically and then evaluated ex vivo follow- ing ureteroscopy and percutaneous nephrostolithomy pro- cedures. the used wires were then photographed with a nikon d . wires were categorized using a semiqualita- tive scoring system to determine the extent of loss of the ptfe coating. summary of results ptfe wires employed during uretero- scopy and percutaneous nephrostolithotomy were asso- ciated with damage and loss of the coating inside the patient. endoscopic video footage demonstrated abundant bright blue ptfe flakes inside the urinary collecting system. the photos of the used wire shows extensive damage to the ptfe coating, at times leaving the ptfe coating almost completely bare. conclusions the use of ptfe coated wires has the poten- tial to leave small flakes within the collecting system. further studies will be required to determine the risk that these retained flakes cause to the patient. l: loss of coating inside urinary collecting system. r: damaged coating on wire. incidence and risks in the development of pin-site infections after pelvic external fixation c mcdonald, r firoozabadi, , j agel, c kleweno , . university of washington school of medicine, seattle, wa; harborview medical center, seattle, wa . /jim-d- - . purpose of study external fixation is an essential tool in the treatment of unstable pelvic fractures. this procedure carries risks including superficial and deep pin-site infec- tions as well as injury to the lateral femoral cutaneous nerve (lfcn). little data exists surrounding infection rates, with no data found on lfcn damage. the purpose of this study was to identify the incidence of superficial and deep infections after pelvic external fixation and abstract figure j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ examine which risk factors may increase the risk of post- surgical pin-site infections. secondarily the study aimed to describe the incidence of lfcn damage. methods used we retrospectively reviewed consecutive patients from a prospective database who underwent pelvic external fixation between january and december to identify factors associated with the development of infection or permanent damage to the lfcn over the course of fixation. risk factors examined included patient age, length of stay, asa classification, iss, bmi, gender, diabetes status, tobacco use, and requirement of icu place- ment. logistical regression was used for statistical analysis to account for possible confounding. summary of results seventeen of patients ( %) developed superficial pin-site infections, with patients ( . %) developing deep infections. fifteen were treated with oral antibiotics, was treated with iv antibiotics, and required surgical debridement. eight required early removal of their external fixation and of patients ( . %) had symptoms consistent with damage to their lfcn after one-year follow-up. utilizing logistical regres- sion to account for possible confounding, no specific factors were associated with an increased risk of infection. adjusted logistical regression models identified no specific factors which were associated with increased risk of infec- tion. conclusions while the incidence of superficial infections related to external fixation is high, the technique remains a valuable tool in the definitive fixation of unstable anterior pelvic fractures. while there is a low risk of lfcn injury, further work is needed to mitigate the risk of infection. surgeons should be aware of these concerns and counsel patients of risks and benefits in the perioperative period. j investig med ; : – abstracts o n a p ril , b y g u e st. p ro te cte d b y co p yrig h t. h ttp ://jim .b m j.co m / j in ve stig m e d : first p u b lish e d a s . /jim -d - - . o n ja n u a ry . d o w n lo a d e d fro m http://jim.bmj.com/ [pdf] development of a hospital reiki training program: training volunteers to provide reiki to patients, families, and staff in the acute care setting | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /dcc. corpus id: development of a hospital reiki training program: training volunteers to provide reiki to patients, families, and staff in the acute care setting @article{hahn developmentoa, title={development of a hospital reiki training program: training volunteers to provide reiki to patients, families, and staff in the acute care setting}, author={j. hahn and patricia m reilly and teresa m buchanan}, journal={dimensions of critical care nursing}, year={ }, volume={ }, pages={ – } } 	j. hahn, patricia m reilly, teresa m buchanan 	published 	medicine 	dimensions of critical care nursing creating a healing and healthy environment for patients, families, and staff is an ongoing challenge. as part of our hospital’s integrative care program, a reiki volunteer program has helped to foster a caring and healing environment, providing a means for patients, family, and staff to reduce pain and anxiety and improve their ability to relax and be present. because direct care providers manage multiple and competing needs at any given time, they may not be available to provide reiki when it… expand view on wolters kluwer sireiki.co.uk save to library create alert cite launch research feed share this paper citationshighly influential citations background citations view all topics from this paper 	reiki 	training programs 	anxiety disorders 	pain citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency reiki, nursing, and health care. 	kathie lipinski, jane van de velde 	medicine 	the nursing clinics of north america 	 save alert research feed examination of the perceptions of registered nurses regarding the use of healing touch in the acute care setting 	j. anderson, mary ann friesen, j. fabian, diane swengros, anna herbst, lucrezia mangione 	medicine 	journal of holistic nursing : official journal of the american holistic nurses' association 	 	 	highly influenced 	view excerpts, cites background save alert research feed examination of the use of healing touch by registered nurses in the acute care setting 	j. anderson, m. friesen, diane swengros, anna herbst, lucrezia mangione 	medicine 	journal of holistic nursing : official journal of the american holistic nurses' association 	 	 	 	view excerpt, cites background save alert research feed promoting caring-healing relationships: bringing healing touch to the bedside in a multihospital health system. 	diane swengros, anna herbst, m. friesen, lucrezia mangione, j. anderson 	medicine 	holistic nursing practice 	 	 save alert research feed complementary health practitioners in the acute and critical care setting: nursing considerations. 	debra kramlich 	medicine 	critical care nurse 	 	 	pdf save alert research feed better pain management for elders in the intensive care unit 	b. diallo, d. kautz 	medicine 	dimensions of critical care nursing : dccn 	 	 save alert research feed feasibility of energy medicine in a community teaching hospital: an exploratory case series 	f. dufresne, b. simmons, + authors k. julliard 	medicine 	journal of alternative and complementary medicine 	 	 	pdf 	view excerpt, cites background save alert research feed immediate symptom relief after a first session of massage therapy or reiki in hospitalized patients: a -year clinical experience from a rural academic medical center. 	m. vergo, briane m pinkson, kathleen broglio, z. li, t. tosteson 	medicine 	journal of alternative and complementary medicine 	 	 	 save alert research feed a cartography of energy medicine: from subtle anatomy to energy physiology. 	e. leskowitz 	computer science, medicine 	explore 	 save alert research feed references showing - of references sort byrelevance most influenced papers recency reiki training for caregivers of hospitalized pediatric patients: a pilot program. 	a. kundu, rebecca dolan-oves, martha a dimmers, c. towle, a. doorenbos 	medicine 	complementary therapies in clinical practice 	 	 	 save alert research feed reiki as a clinical intervention in oncology nursing practice. 	larraine m. bossi, m. j. ott, susan decristofaro 	medicine 	clinical journal of oncology nursing 	 	 	view excerpt, references background save alert research feed the effects of reiki therapy on pain and anxiety in patients attending a day oncology and infusion services unit 	n. birocco, camilla guillame, + authors l. ciuffreda 	medicine 	the american journal of hospice & palliative care 	 	 	pdf save alert research feed each moment of touch. 	c. brill, m. kashurba 	psychology, medicine 	nursing administration quarterly 	 	 	pdf save alert research feed reiki therapy: the benefits to a nurse/reiki practitioner 	k. whelan, g. wishnia 	medicine 	holistic nursing practice 	 	 save alert research feed nursing : the philosophy and science of caring 	jean watson 	medicine 	 	 save alert research feed camping in the pacu: using complementary and alternative medical practices in the pacu. 	b. scales 	medicine 	journal of perianesthesia nursing : official journal of the american society of perianesthesia nurses 	 	 save alert research feed the increasing use of reiki as a complementary therapy in specialist palliative care. 	b. burden, sandy herron-marx, c. clifford 	medicine 	international journal of palliative nursing 	 	 	view excerpt, references background save alert research feed reiki healing: a physiologic perspective 	w. wetzel 	medicine 	 	 save alert research feed caring theory as an ethical guide to administrative and clinical practices 	jean watson 	sociology, medicine 	nursing administration quarterly 	 	 	pdf save alert research feed ... ... related papers 	abstract 	topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue [pdf] inpatient falls | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . / corpus id: inpatient falls @article{cumbler inpatientf, title={inpatient falls}, author={ethan cumbler and jennifer r. simpson and laura d. rosenthal and david j likosky}, journal={the neurohospitalist}, year={ }, volume={ }, pages={ - } } 	ethan cumbler, jennifer r. simpson, + author david j likosky 	published 	medicine 	the neurohospitalist in this part series, analysis of the risk stratification tools that are available, definition for the scope of the problem, and potential solutions through a review of the literature are presented. a systematic review was used to identify articles for risk stratification and interventions. three risk stratification systems are discussed, st thomas’s risk assessment tool in falling elderly inpatients, morse fall scale, and the hendrich fall risk model. of these scoring systems, the hendrich… expand view on sage europepmc.org save to library create alert cite launch research feed share this paper citations view all figures and topics from this paper 	 figure 	 figure 	 figure 	 figure 	accidental falls 	review [publication type] 	inpatient 	stratification 	neurology speciality 	scientific publication 	conflict (psychology) 	solutions 	vision 	manuscripts 	patients citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency an analysis of falls and those who fall in a chronic care facility. 	c. mcgibbon, j. slayter, + authors p. jarrett 	medicine 	journal of the american medical directors association 	 	 save alert research feed a prediction model of falls for patients with neurological disorder in acute care hospital 	sung-hee yoo, s. r. kim, y. shin 	medicine 	journal of the neurological sciences 	 	 save alert research feed the predictive value of fall assessment tools for patients admitted to hospice care 	rebecca j patrick, d. slobodian, s. debanne, ying huang, charles v. wellman 	medicine 	bmj supportive & palliative care 	 	 save alert research feed risk factors of falling in patients with neurological diseases 	michaela miertová, ivana bóriková, m. tomagová, k. Žiaková 	medicine 	 	 	pdf save alert research feed project management & educational strategies to reduce ip falls 	paula goga eppenstein, bridget mclemore 	computer science 	 	pdf save alert research feed effectiveness of non-pharmacological interventions to prevent falls in older people: a systematic overview. the senator project ontop series 	j. rimland, i. abraha, + authors a. cherubini 	medicine 	plos one 	 	 	pdf save alert research feed elderly taiwanese's intrinsic risk factors for fall-related injuries 	i. li, y. hsiung, hui-fen hsing, m. lee, te-hsin chang, ming-yuan huang 	medicine 	 	 	 save alert research feed development and evaluation of an automated fall risk assessment system. 	j. lee, y. jin, jinshi piao, sun-mi lee 	medicine 	international journal for quality in health care : journal of the international society for quality in health care 	 	 	pdf save alert research feed patient location and mobility factors associated with falls on an inpatient geriatric psychiatry unit 	danielle struble-fitzsimmons, a. oswald, elizabeth dipersia 	medicine 	 save alert research feed research of falls risk of taking central nervous system drugs in oncology inpatients. 	yadi li, q. zhang, + authors dongdong yang 	medicine 	current problems in cancer 	 	 save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency falls risk factors in the hospital setting: a systematic review. 	d. evans, b. hodgkinson, l. lambert, j. wood 	medicine 	international journal of nursing practice 	 	 	highly influential 	view excerpts, references background save alert research feed accidental falls in hospital inpatients: evaluation of sensitivity and specificity of two risk assessment tools. 	c. lovallo, s. rolandi, a. rossetti, m. lusignani 	medicine 	journal of advanced nursing 	 	 	view excerpts, references background save alert research feed evaluation of three fall-risk assessment tools in an acute care setting. 	emily ang neo kim, s. mordiffi, w. bee, k. devi, david evans 	medicine 	journal of advanced nursing 	 	 	view excerpts, references methods save alert research feed using the care dependency scale for fall risk screening. 	e. mertens, r. halfens, t. dassen 	medicine 	journal of advanced nursing 	 	 	view excerpts, references background save alert research feed hospital falls: development of a predictive model for clinical practice. 	a. hendrich, a. nyhuis, t. kippenbrock, m. soja 	medicine 	applied nursing research : anr 	 	 	highly influential 	view excerpts, references background save alert research feed meta-analysis of fall-risk tools in hospitalized adults 	l. harrington, r. luquire, + authors h. qin 	medicine 	the journal of nursing administration 	 	 	highly influential 	pdf 	view excerpts, references methods and background save alert research feed predictive validity of the hendrich fall risk model ii in an acute geriatric unit. 	dhurata ivziku, m. matarese, c. pedone 	medicine 	international journal of nursing studies 	 	 	view excerpts, references methods and background save alert research feed a simplified fall-risk assessment tool for patients hospitalized in medical wards. 	f. salameh, n. cassuto, a. oliven 	medicine 	the israel medical association journal : imaj 	 	 	pdf 	view excerpts, references background save alert research feed adding value to the stratify falls risk assessment in acute hospitals. 	a. barker, j. kamar, m. graco, v. lawlor, k. hill 	medicine 	journal of advanced nursing 	 	 	view excerpts, references background and methods save alert research feed using targeted risk factor reduction to prevent falls in older in-patients: a randomised controlled trial. 	f. healey, a. monro, a. cockram, v. adams, d. heseltine 	medicine 	age and ageing 	 	 	pdf save alert research feed ... ... related papers 	abstract 	figures and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue reports and surveys reports and surveys autonomous legged robot . developing the rs- robodog what is claimed to be the world’s most advanced, autonomous legged robot to be developed and marketed is called the rs- robodog. produced with the aid of collaborative design software it is being marketed after less than a year’s development and was available from april after its launch by its british developers, roboscience. the company say that it is: intended to be both an advanced robotics technology demonstrator and a limited-edition commercial product, the rs- robodog incorporates breakthrough technol- ogy in a number of areas. this technology will form the platform for the next-generation lightweight robotics required for automating a wide range of industrial and domestic tasks and for eliminating the need for human involvement in high-risk industrial and military environ- ments. the size of an adult labrador and powerful enough to lift itself up carrying a five-year old child on its back, the rs- robodog was developed in just seven months – from initial design concept to finished, working product thanks to an internet-based collaborative engineering environment cen- tred on the ugs* product development and manufacturing software suite, unigraphics. the use of advanced software for such a collaborative project is now regarded as essential.** roboscience used the unigraphics software suite and reports that: “with the design team dispersed around different loca- tions, we needed advanced software that would support a collaborative development environment by allowing com- plex design information to be shared over the internet. ugs’s software gave us that capability and allowed our development team to design the rs- robodog’s , components in record time – and more importantly, have them fit together first time.” . design and technology breakthroughs two of the most significant design and technology break- throughs made during the development of the robodog were in the areas of its joints and in the body construction, where the use of the unigraphics software suite was critical to the project’s success. the roboscience developing team report that: “the joints that we have developed can be thought of as the robot’s muscles, combining elements that are usually separated, such as hinges, motors and a gearbox in a way that provides a far superior power-to-weight ratio than conventional designs. this is one of the secrets of the rs- robodog’s advanced motive abilities and run time.” during the design of the joints, design data from an external design spreadsheet was imported into the software where it was used in creating the basic geometry for the parametric d models. the final detailed design and assembly modelling of the joints was then completed in the usual way in the d cad environment. using unigraphics, the design work and the production of manufacturing information was able to be completed in a matter of days, with the result that working prototypes of the joints were ready for testing less than a month after the design work had begun. meanwhile, the body presented another, altogether differ- ent design challenge. the rs- robodog body is an exoskeleton, or monocoque construction. so in fact, it is more like a crab or a scorpion than a dog. the exoskeleton construction presented two main, diffi- culties. the first was that, because it was designed from the outside in, there was a chance that one could end up without enough space to fit everything inside properly. the second was that with an exoskeleton, the styling parts are the same as the structural parts and are always being adjusted during the design process. in fact, with robodog, a greater percentage of the structural parts are visible than on an aircraft or car. a further important factor was that, because of the time constraints under which the development team was work- ing, design of the body construction had to begin before the joints and other internal components had been fully tested and finalised. . integrating styling, engineering and manufacturing the use of advanced software at this stage of development was crucial. the design process was similar to that for the joints but this time, the issues were styling, surface modelling, packaging of the components and manufacturing – all of which were dealt with in a collaborative engineering environment, driven from the same mathematical master model and using the internet to communicate design information between different members of the team. * ugs (nyse: ugs) is a software and services company which is dedicated to helping manufacturers optimise their product lifecycle process. it has been established for some years, and operates worldwide. for further details: contact: roboscience: nick.witth@roboscience.com and ugs: kate.mills@ugs.com ** other companies with experience of the use of collaborative design software are also invited to contribute to this section. robotica ( ) volume , pp. – . © cambridge university press doi: . /s printed in the united kingdom https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core to save costs and time, the decision was made to go to a fully working ‘production’ prototype without the luxury of building elaborate mock-ups first. all styling and engineer- ing design decisions were therefore made within the unigraphics d model environment. the actual manufacturing of rs- robodog‘s compo- nents was handled by external suppliers, with final design data being transmitted to them over the internet and imported directly into their cam (computer-aided manu- facturing) environment in native form using ugs‘ parasolid xt format. this ensured an accurate and fast data transfer. the typical time to design tooling for a component was one hour, while the typical time to transfer that design over the internet to the manufacturer was five minutes. throughout the design of the rs- robodog, partic- ularly when it came to its body, ugs‘ ug/visualise software – part of the company’s shape studio industrial design software suite which fully integrates with unig- raphics – was used to create photorealistic visualisations for styling decisions and for use in future marketing activities. roboscience believe the development would not have been possible without the use of advanced collaborative design software, particularly in a tight development environ- ment. this resulted in their ability to integrate the different processes in a single d model and communicate them over the internet. apart from the operating system used in its robots (microsoft, windows) and some other secondary software components, roboscience owns all of the intellectual property rights (ipr) and patents that are being pursued as a result of the development of the rs- robodog. industrial robot survey a survey* by the united nations economic comission for europe (un/ece) and the international federation of robotics (ifr), based on the available data for orders for industrial robots in europe reports a boom in robot orders in europe. whilst most readers await data that includes the fourth quarter of l with some apprehension this survey is able to record statistics that are particularly impressive in europe. . robot orders have boomed in europe “never before have so many orders for industrial robots been placed by the european industry, pointing towards an acceleration in the drive to automate”, says jan karlsson of the united nations economic commission for europe (un/ ece), which together with the international federation of robotics (ifr), regularly survey the robot market. in , orders for industrial robots in europe were % higher than in (see figure ). judging by the fourth quarter of , which showed an increase of %, there is no slow- down in sight in the european investment activities, at least not as concerns robotics systems. the figure for europe is, in particular, impressive in the light of a % surge in followed by a % growth in (see figure ). . world-wide orders were up % world-wide orders for industrial robots were up % in compared with , slightly down from a growth rate of % in over . the world-wide increase was concentrated to europe, up %, and asia, up % (see figure ). after an impressive increase in orders of % in over , it was expected that orders would drop in north america. a fall as high as %, however, is a clear indication of the slow-down in the american economy. . non-automotive industries are stepping up their robot investments normally, it is the automotive industry that leads the drive to robotize. this was the case in . in , however, there was a significant turn around. world-wide non-automotive industries increased their orders with close to % while final automotive assembly only increased by % and automotive components with %. * for more information about the ece/ifr survey please contact: mr. jan karlsson statistical division united nations economic commission of europe (un/ece) palais des nations ch - geneva switzerland phone: + ( ) fax: + ( ) e-mail: jan.karlsson@unece.org international federation of robotics (ifr) box s - stockholm sweden phone: + ( ) fax: + ( ) e-mail: ifr@vi.se mr. mike wilson chairman of ifr meta vision systems ltd. oakfield house oakfield industrial estate eynsham, oxfordshire ox th united kingdom phone: + ( ) fax: + ( ) e-mail: mike.wilson@meta-mvs.co.uk fig. . percentage change in order intake of industrial robots, over , over and over . sources: united nations economic commission for europe (un/ece) and international federation of robotics (ifr). figure supplied by un/ifr) reports and surveys https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core in asia and europe, non-automotive industries increased their orders with as much as % and %, respectively. in north america a modest growth of % was recorded in orders from the non-automotive industries, in contrast to the automotive industry which recorded sharply falling robot orders. . robotization spurred by plummeting robot prices the surge in robot investments has several explanations. a central reason is that prices of robots are falling rapidly relative to labour costs. robot prices in year were on average % lower than in (see figure ). at the same time today‘s robots have much higher performance than those produced in with respect to versatility, speed, accuracy, and above all computer power. a quality adjusted price index, that is an index in which consideration is taken to the continuous performance improvements, would therefore show an even higher price reduction. it is estimated that a robot in year costs less than one third of a robot in with the same performance. . increasing labour costs while prices of robots have plummeted and quality has increased, labour costs have risen steadily. in the united states, for instance, labour compensation in the business sector rose by % in the period – (see figure ). at the same time robot prices in the us dropped by over % without taking any consideration to improved robot qualities and performance. by taking the later into account prices would have dropped more than % showing that robots have had a price/performance development similar to that of personal computers. for every year, robots are becoming more and more cost-effective vis-á-vis manual methods of production. “rapidly falling relative prices of robots paired with shrinking labour supply, in particular to the manufacturing sector, in the years ahead will spur continued high growth in robot investment”, says mike wilson, chairman of ifr. “we have only seen the first phase of the robotization drive, which has mainly focused on the automotive industry. the food industry and all other manufacturing industries as well as many non-manufacturing sectors, are as the year data clearly show, significantly stepping up their investment in robot systems” says jan karlsson, un/ece. innovative systems . broadband technology in the united kingdom broadband technology is providing a communications revolution.unfortunately it needs to be publicised countrywide. the uk government and business leaders are trying to remedy this, particularly for the small to medium companies. it now advertises ‘broadband britain’ in order to sell the latest tool in the electronic revolution. government agencies say their biggest problem is that not many people know what it is nor what it can do for them. what has until now been available only to the big businesses and concerns at great expense is now finally available it says, for all, that is subject to the telecom companies and other service providers supplying the necessary access. at the moment it is being sold as an ‘always on access’ to the internet. this, provided the price is right, is a justification for many users to adopt broadband technology. at present the multi-billion pound broadband commu- nications networks can be used in many parts of the uk. the uk has set out its vision in its document broadband britain–uk outline: the broadband future. the government says that it is on course to ensure that the uk has the most extensive and competitive broadband market among the g nations by . currently the packages available will not be taken up in homes, councils, schools, hospitals, libraries and businesses until there is some understanding of what it is and what it can do. broadband covers a range of technologies including cable modems, asymmetrical digital subscriber lines (adsl) as well as wireless data. it opens networks to provide unlimited bandwidths, that is the amount of information that can be sent over a communications link, usually measured in bits- per-second. broadband technology allows information to move at l , , and times faster than conventional links. it can provide virtually unlimited bandwidths capable of carrying the most complex multimedia content at high speed. fig. . price index of industrial robots (based on $ conversion rate), with and without adjustment for improved quality (performance). sources: united nations economic com- mission for europe (un/ece) and international federation of robotics (ifr) . figure supplied by un/ifr). fig. . estimated price index of industrial robots in the united states, with and without adjustrment for improved quality (performance). index of labour compensation in the u.s. business sector. reports and surveys https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core . broadband packages in the u.k. the first broadband packages have been available since and some internet access services are designed specifically for it. . new systems and services current packages range in speed from kb/s (kilobits a second) which gives downloading speeds nearly times faster than the standard k modem to mb/s (megabits a second) which is times faster. two widely available broadband systems are adsl (asymemetric digital sub- scriber line), developed by british telecom (bt) and another system using cable modems. the latter system connects premises to a fibre-optic cable network, offered by uk cable services companies ntl and telewest. bt reports that it currently has , subscribers to adsl and its unbundling of its local exchanges has allowed independent operators to buy broadband wholesale to offer their own adsl services to customers. bt‘s mass-market internet business btopenworld has also launched a satellite service to home-based firms and small/medium businesses. it will in due course be available in many parts of the uk. most companies and home users see broadband as vital for their communications systems. although slow in coming and being accepted, it is now regarded as vital for the new digital economy. . smart armour the report that defence scientists are developing smart armour is not entirely unexpected, but the choice of system is certainly a surprising one. the reports say that researchers are developing a system that would use powerful magnets to melt and destroy incoming missiles and shells that threaten a military vehicle. new super tanks are to be covered with the smart armour which, we are told, uses electrical fields instead of thick metal for its protection. it would mean that using this new technology the tanks would no longer weigh some tonnes, because they would normally be constructed of heavy plating, but more likely a mere tonnes. the new scientist (august, ) carries research details of the new technology. it says that each tank would be covered with tiles made of strong plastic under which sandwich of different materials would be installed. first there would be a mat of optical fibres and then a thin sheet of standard armour plating. underneath that would be a series of metal coils. the report describes its actions as follows: when an anti-tank shell explodes on standard armour, the copper cone of its head is projected as a powerful jet of metal that travels at five miles a second. this jet forces an immense amount of energy on a tiny area and so can cut easily through several metres of dense material causing great damage inside the tank. in contrast if such a shell strikes smart armour, a very different reaction would occur. initially it would sever optical cables in the mat below the tank‘s outer plastic cover. this would trigger sensors to activate electrical capacitors inside the vehicle which would send a heavy current through the metal coils at the base of the smart armour. a massive electro- magnetic field would be created inside the armour, as the high velocity copper jet begins to pass through it. the field would induce electrical currents in the copper. with enough current input into the copper it can be heated up and start pinching it in certain regions, making it unstable. the thin copper jet would be flattened and broadened out and so would be unable to to cut through the thin standard plating at the base of the smart armour. what happens is that electromagnets have been used to dissipate the energy of an anti-tank missile or shell, providing a force field to protect the tank. there are obvious ‘spin-offs’ to the use of magnetic pulses to provide a protective shield in other applications where such protection is required. smart armour could well be developed for other uses such as the protection of vehicles, aircraft, installa- tions, etc. . new digital radio system the national radiological protection board* of the united kingdom (nrpb) has produced a report on the possible health effects from terrestrial trunked radio (tetra). the nrpb say that: terrestrial trunked radio (tetra) is a new digital radio system for use by commercial organisations and the emergency services. its operation results in pulse modula- tion of the radiofrequency (rf) signal at a low frequency ( . hz). concerns have been raised about possible health effects of exposure to rf radiation that is pulse modulated (a form of amplitude modulation) at low frequencies. agnir has reviewed the features of opera- tion of the tetra system, the likely levels of exposure of people, and studies relevant to the assessment of any biological effects. it has noted that the signals from base stations are not pulsed whereas those from hand portables and from terminals built into vehicles are. agnir has concluded that although areas of uncertainty remain about the biological effects of low-level rf radiation in general, including modulated signals, current evidence suggests that it is unlikely that the special features of signals from tetra hand portables and terminals mounted in vehicles pose a hazard to health. this report by the national radiological protection board‘s advisory group on non-ionising radiation (agnir)i gives advice on possible health effects of terrestrial trunked radio (tetra). it has been prepared, at the request of government, as a consequence of a recommendation by the independent expert group on mobile phones (egmp)ii in may that “. . . as a precautionary measure, amplitude modulation around hz should be avoided, if possible in future developments in signal coding.” for references (i) and (ii) see next page. the iegmp recommendation was made because of the results of a number of studies on the effects of radio- frequency (rf) fields on the rate of loss of radiolabelled calcium from the brain and other tissues. these studies, most of which were carried out in the late s and early * nrpb website: http://www.nrpb.org.uk reports and surveys https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core s, and mainly on isolated, non-living tissue, had suggested that when the rf signal was amplitude modulated at around hz the rate of leakage of calcium was increased. calcium plays an important role in many biological processes, especially in the function of nerve cells. the egmp concluded that although no obvious health risk was suggested, as a precautionary measure, amplitude modulation around hz should be avoided, if possible. tetra is a new digital system for mobile radio. it is designed to replace the older analogue radio systems used by the emergency services and commercial organisations, and it offers a variety of new facilities such as data communication and improved security. in the uk, a tetra system is currently operated by dolphin for commercial use, and trials are underway for a system to be operated by bt airwave for the police and possibly other emergency services. tetra operates at around mhz, using a network of fixed base stations to serve mobile terminals that are in the form of hand portables (similar to mobile phone handsets) or built into vehicles (called mobiles by the police). the tetra base stations provide the service either directly or indirectly via repeaters that are generally built into vehi- cles. the operation of tetra results in power modulation of some of the rf signals at a pulse frequency of . hz. as a consequence of the recommendation by iegmp, concerns have been raised about any health implications of its use. the principal features of the system, the carrier and modulation frequencies at which it operates, and the characteristics of relevant hand portables are described in the report by agnir. it is noted that although the signals from mobile terrninals and repeaters are pulse modulated, those from base stations are not. therefore the rf fields from tetra base stations, to which the general public will be exposed, are not only very low but are also not pulsed. also considered are the likely exposures to rf fields of users of tetra systems. all exposures are considered in relation to existing guidelines. experimental studies available for assessing any possible health effects arising from exposure to signals from tetra are examined. the calcium-efflux studies carried out in the late s and s are reviewed and placed in the broader context of more recent studies that have examined the effects of amplitude-modulated and pulsed rf radiation on brain tissue over a range of frequencies. other relevant studies are also considered, including those on the excitabil- ity of nerve cells, effects on brain electroencephalograms (eegs), epilepsy and other possible biological effects. although there have been no epidemiological studies on the consequences of exposures to tetra systems as such, those studies relevant to rf exposure in general are also summarised. recommendations for further work are included in the report. the principal conclusions of the review by agnir are given below: “it is recognised that calcium plays an important role in many biological processes, especially in the function of nerve cells. moreover, as the independent expert group on mobile phones pointed out, there is evidence suggest- ing that rf fields, amplitude-modulated at about hz, may influence the leakage of calcium ions from tissues. however, fndings have been contradictory; they are more uncertain for living than for non-living tissue, and no associated health risk has been identified. it is notable that the signals from tetra base stations are not pulsed whereas those from mobile terminals and repeaters are. although areas of uncertainty remain about the biological effects of low-level rf radiation in general, including modulated signals, current evidence suggests that it is unlikely that the special features of the signals from tetra mobile terminals and repeaters pose a hazard to health.” readers may wish to obtain more information and the following references have been included: references (see previous page) (i) report on possible health effects from terrestrial trunked radio (tetra). report of an advisory group on non-ionising radiation. published on the nrpb web site july www.nrpb.orc.uk. to be published later this year in the documents of nrpb, volume no. ( ). (isbn - - - ) £ . . (telephone: - , fax: - or email information@nrpb.org.uk. (ii) iegmp ( ). mobile phones and health. report of an independent expert group on mobile phones. chairman sir william stewart. (isbn - - - ) £ . . available from the nrpb (see . above) or on www.iegmp.org.uk. . a robot to stroke seedlings. it is reported that a robot designed to stroke seedlings to make them grow faster has been developed by researchers. a research project at greenwich university uk, has, apparently, confirmed that plants crave the human touch and they have in consequence developed a stroking machine which has been called dr. green. it is reputed to have many benefits for both gardener and the environment. the designers at the university‘s school of engineering say that their robot can reduce reliance on fertilisers. the robot was demonstrated at the london chelsea flower show, where it highlighted thigmomorphogenesis, the technique for brushing the tips of young plants to produce sturdy specimens. currently the robot is being tested on a large scale by a uk bedding plant producer. the technique has also been used in research at the university of pennsylvania where researchers found that a single gentle stroke from base to tip resulted in toadflax plants living longer and growing more quickly. when sulphur cinquefoil, another plant, was caressed once a week, it developed increased insect resistance. indeed it is believed that stroking seedlings once a day makes them % stockier. the prototype robot used at the chelsea flower show had a foot sweeper that stroked plants all day. in normal use, we are told, the robot dr. green would brush plants times every morning and evening. reports and surveys https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core such a robot would ultimately be part of a fully automated system which would be of great importance to plant producers. such a system would require robust plants since plants grown in protected environments tend to be thin due to high temperatures, low light levels,plenty of nutrients and low wind speeds. automated systems would be designed to give plants the opportunity to respond to an increased degree of physical disturbance from touch or windmovement and grow shorter and stockier. robots obviously) have a role to play in such systems and dr. green is only one innovative device that will ultimately be in use. lifelike robotic fish what is claimed to be the world’s first lifelike robotic fish is being produced by japan‘s mitsubishi heavy industries (mhi). it is said to be the first such robot fish to be made available on the market that is both radio-controlled and also lifelike. called the “mitsubishi animatronics”. the anima- tronic device is in the likeness of a coelacanth, an ancient fish called a “living fossil.” mhi is creating the lifelike creature in the hopes of marketing it and similar animatronic systems to amusement parks and aquariums. the completed coelacanth, as well as a special water tank and a computerized control system, are scheduled to be delivered to the “aquatom,” which is a , -square metre science museum currently being built in fukui prefecture, japan. the robot fish will be exhibited to the public at the entrance hall of aquatom. the artificial coelacanth, measuring centimeters long and weighing kg, will be powered by an internal battery and controlled automatically by a computer. mhi has employed its elastic oscillating fin propulsion control system to reproduce the lifelike swimming motions of a real fish. the technology synchronizes fin movements on the fish to control both thrust and direction. the body of the fish is partly made of silicone plastic, an elastic material. mhi describes the system as an: elastic oscillating fin propulsion control system where propulsion is produced when an elastic board is oscillated in the water. based on the natural motion of fish, this technology was originally intended for application on propeller-driven marine vehicles. advancements in com- puter and control technologies have, in this case, enabled propulsion by delicately controlling elastic fins on the fish. compared with a prototype model, the major feature on the production model is further improvements in movement. this has been achieved by increasing the number of controlled fins. while adding fins has made it more difficult to control the balance of the fish, the end result is superior lifelike movement. synchronized ventral fins have been added to the production model, whereas pectoral fins and a caudal fin were already present on the prototype. another feature of the artificial fish is its fully automated operating system. when visitors press a button at the front of its holding tank, the coelacanth will start swimming and, when its battery runs low, the fish will automatically swim to a recharging unit. this feature eliminates the need for an operator during regular exhibition of the fish. by incorporating its advanced technologies and accumu- latied experience, mh has been able to reproduce the coelacanth, a rare, deep-sea creature, which the public would seldom have a chance to see in real life. the company‘s mitsubishi animatronics marketing division hopes to market its work to amusement facilities and aquariums. for further information, contact hideo ikuno: hikuno- @golinharris.com, telephone: + - - - , fax: - - - - . new products for automation . family of welding robots the use of welding robots worldwide is now an accepted part of the international industrial scene. a report for the united kingdom outlines new advances in design and application. it highlights the recent addition to the six abb welding robots already in use with the bridge builder mabey & johnson at their lydney plant in the uk. the company have ordered an irb l welding robot for immediate installation, because the head of the company’s robot selection team believes that its advanced design was superior to that offered by other manufacturers. others may disagree, of course, but he points out that its cutting-edge productivity features such as bullseye® automated torch calibration and advanced welding control ‘seamtracking’ system as well as its commonality with and reliability of their current abb robots were its main selling points (plate ). the robot will provide extra capacity for new bridging contracts, particularly increased production of the mabey compact system of modular panel bridges, and will form the initial phase of a programme of re-investment in new automation. as well as a wealth of civil applications throughout the world, mabey & johnson’s compact bridging system was used for no less than sites in bosnia to fulfil the line of communication for the united nations protection force in bosnia (unprofor). plate . reports and surveys https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core the compact is a readily transportable, prefabricated bridging system, which can be rapidly erected in only a few days by unskilled labour without plant, and requires minimal maintenance thereafter. the system uses a high strength steel structure based on . m long vertical panels, with attaching transoms, reinforcement chords, frames, braces, steel decking units, kerbing and other basic components. to maintain simplicity, these are standardised and the number of different compo- nents kept to a minimum. welding/fabrication of the components is carried out primarily by six modular-based abb robots, each mounted on a traveling column and organised into paired cells operating hours a day, seven days a week. although the function of each cell can change, normally cells & are dedicated to panel fabrication, cells & chords, and cells & decking. the new irb l will form a seventh ‘floating’ cell that will process components as production contingencies occur, and form a back-up ceil as individual robots are removed for upgrading. the irb l is part of the irb family of robots which offer a longer reach for welding, higher load capacities, improved motion performance, improved relia- bility and improved serviceability. each robot model uses an average per cent fewer parts than earlier models and reliability has been increased even further with the introduction of maintenance-free gear- boxes, better cabling and longer intervals between routine inspections (now a simple two-point check every three years). robot control and operation is through the well-proven s c plus controller, with easy-to-use windows-style user interface, function keys and pull-down menus, while the quickmove self-optimising control provides the robot with fast acceleration and constant high speed even with complex path following. a key feature of the irb l, which won over the mabey & johnson specifiers, was its bullseye® automated torch calibration system. bullseye® ensures optimum qual- ity and reduces downtime by enabling the robot to check its own tool centre point (tcp). the tcp is a crucial reference point that determines the position, accuracy and quality of the weld. on most robots, tcp confirmation is normally a lengthy, arduous process that is carried out on a regular basis after occurrences such as collision with a fixture, changes in ambient temperature or a worn contact tip. the irb l also features advanced weld control (awc) ‘through-the-arc’ tracking. awc follows weld joints by sampling the welding current and voltage signals synchronized with the robot weave pattern, and provides vertical and horizontal correction signals to the robot controller to assure a consistent fill of the weld joint. advanced tracking is required to accommodate special situations where joints vary, other special weld conditions apply or when a ‘part fit’ is less than desirable. mabey & johnson tell us that: “the longevity, reliability and maintainability of our abb robots has been excellent, with some of them having worked almost non-stop for years.” we have no doubt that the new irb l and other abb robots to follow will help us respond quickly and efficiently to future market trends. reports of new advances in design and apllication of welding robots will be continued in future issues of this journal. . multiple actuators and cartesian robots the range of linear multiple actuators and cartesian robots available in europe has been greatly increased. toshiba machine (see plate ) and tm robotics* are marketing the ba series,more commonly known as the roibot. this uses a modular building block design, allowing single or multiple axis configuration to be built from the same standard components. this system allows for over configurations whilst the compact design minimises space requirements. tm robotics say that: each axis can handle up to kg and features ac servomotors, precision ground ball screws and high rigidity linear guides. motors can be mounted on either side of the axis, or underneath, to reduce its overall length. the junction box unit can be mounted almost anywhere along the axis and allows cable to exit from any of five directions. the robot is supplied with a unique flexible tube carrier system, which, can be mounted horizontally or vertically. * tm robotics (europe) ltd, concord house, grenville place, mill hill, london, nw sa, uk (tel. + - - ; fax. + - - ) plate . reports and surveys https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core the controllers are similar in size to a stand-alone ac servo driver and fit easily into an instrumentation panel. built in i/o can eliminate the need for external plc or sequencer controls and provides standard support for basic pick and place and palletising routines. up to four controllers can be connected together in a multitasking system and each one can accept a pulse train input for movement commands, allowing an external motion control system to be easily integrated. many options are available the company claim. the standard model locates the home position sensor on the axis close to the motor. in addition, we are told an optional home position- changing sensor is available, which allows it to be moved to the opposite end of the axis furthest away from the motor mounting. changing the home position, tm robotics say, can allow more efficient return to home operations in special configurations. the unit can be programmed using familiar win- dows™ based programming tools and the programming language is carried over from existing roibot lines to facilitate the use of all equipment. as an option, the unit can be supplied with the tph- a teach pendant, which connects to a main controller and serves as an alternative programming device. it also provides the controller with home position, start, stop, reset and emergency stop instructions. it can display alarm conditions, current pro- gram step and current position data. further options include clean room and dust resistant options as well as regenerative discharge units. . six-axis force/torque sensor system tatem industrial automation ltd* have produced the gamma compact monolithic transducer which they claim is accurate to % of full scale and converts six component force/torque values into amplified analogue signals with a high signal to noise ratio. they are supplied pre-calibrated but can be easily re-programmed to provide a reliable and highly versatile plug-and-play system. force and torque in x, y and z axes – in a single compact package! these ati transducers have been successfully used to monitor and control both force and torque associated with the grip and touch functions used in the development of surgical prosthetics. however, technological progress pre- sages the ever growing use of the products in general industrial robotic applications for design, manufacture, assembly, testing and inspection over a very broad engineer- ing spectrum which includes the nuclear industry. typical applications include: • remote force and sensing with nuclear telerobotics • real time force control • haptics feedback and prosthetic device testing and manufacture • robotic assembly • automotive and general engineering part testing • polishing • automotive seat tesing tia robotic tooling solutions in a recent release say that the extreme high strength of the gamma transducer permits maximum allowance overload values of . to times rated capacities. they also believe that the silicon strain gauges provide signals times stronger than conventional foil gauges, with amplified signals also benefiting from near zero distortion. three models are available covering sensing ranges of ± to n and ± . to n-m. these can be stand alone units or computer interfaced, the latter providing times greater resolution. the products are manufactured from high strength aluminium with compact dimensions of approximately mm diameter � m height, and weighing only grams. they feature a removable adaptor plate to facilitate customised mounting requirements. the transducers are supplied with a shielded high-flex cable and intelligent computer bus or stand alone controller for data output rates of up to hz. this speed exceeds most robotic and data collection requirements, it is claimed. other suppliers who market robotic devices will also be featured in coming issues. remote controlled robots . innovative applications of remote controlled robots. there are now numerous reports of the use of remote controlled robots. the range of applications seems to grow by the day. industrial, business, military predominate, but medical uses now receive more coverage, often because of their direct human interest and frequently life-saving scenarios. the biggest difficulty in all these applications is the means of communication. telecommunication lines have been used in many instances with networks set up to speed operations. the internet has been frequently used, as well as satelite links and other innovative systems. we are, of course, on the threshold of the development of these remote controlled systems, but it is encouraging to read of their practical successes. several experimental systems have been reported in this section in an effort to publicise the transition from the theoretical research to the reality of practical application. one such application is reported in the following paragraphs. . transatlantic operation to remove a gall bladder most developers are now afraid of using “the first ever” caption for their endeavours, whilst manufacturers have no qualms about making such claims. the recent report received about this transatlantic operation to remove a gall bladder proudly announced it to be the ‘first transatlantic operation’. it said that surgeons in new york carried out the operation using remote controlled robots to remove the gall bladder of a woman in france. the procedure was carried out by three french surgeons at a control console equipped with monitor screens. we are* website: www.tatem.co.uk reports and surveys https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core told that the careful and delicate movements of the surgeons hands in new york were electronically transmitted a distance of , miles to an operating theatre in stras- bourg, where a set of robot arms obeyed their commands. the result was that the gall bladder was successfully removed in just under an hour and we are informed that the -year old patient was discharged from strasbourg civil hospital hours later. . telemedicine it is important to note the difference between this reported remote controlled operation and some others that have been held. many ‘telemedicine’ operations have been confined to providing communication links and a limited degree of surgical expertise. in this transatlantic operation it is claimed that for the first time surgeons have completed a long-distance remote-controlled operation themselves. one of the problems that such operations encounter is the ‘time lag’ which is, of course, caused by transmitting the information along the telecommunications lines or other linking system. in this case we are told a ‘high speed optical network’ was used in an attempt to increase the speeds of transmission of the data required by the remote robot- surgeons that are actually in contact with the patient being operated upon. although advances in both communication. robotic devices and the visual interface between them and their surgeon-operators continues there will at present be some reluctance to use such systems for everyday routine surgery. although, as we will see in the detailed account of the franco-american transatlantic operation, the time delay in transmitting data for this particular surgical procedure was not a drawback. . operation lindbergh the revolutionary procedure which is claimed to be the world’s first example of intercontinental surgery and which is said to shatter distance records for the technique is called operation lindbergh. the team of franco-americans used ‘virtual scalpels’ linking them to a computer in new york to control the movements of zeus, a robot in the operating theatre of the strasbourg hospital. this machine replicated their hand strokes precisely. we are told by the team that the electronic commands and video footage made the round trip in milliseconds and the actual operation on mme schall, the french patient, took less than an hour to complete. details of the surgery were published in nature (sep- tember ), but we are told that on september , , it was performed by professor marescaux and his colleague, michel gagner using a computer console at mount sinai medical centre in new york. video footage of each scalpel movement was relayed to the doctors with, it is claimed, a time delay too short to be noticed by the human brain. the zeus equipment took minutes to set up,and the procedure was completed in minutes. every aspect bar the initial incision and post-operative stitching was per- formed by the robot. since the procedure was in a sense still experimental a full team of surgeons were standing by in case of any problems. . new era for operations the success of operation lindbergh heralds a new era in which surgeons will be able to operate on patients anywhere in the world without leaving their own theatres. what it means is that access to specialised skiils and training will be completely transformed. life-saving surgery by robots within metres of the battlefield will be possible for military personnel wounded in combat or in accidents, all at a minimal risk to the doctors involved in the procedure. professor marescaux of the louis pasteur university of strasbourg, the leader of the surgical team believes that: it was a milestone in medical history. we are looking at a technique that will make surgery completely global. he also believes that similar methods could be applied to many other complicated treatments. for example, he said : there are few things for which this is impractical. i am convinced that in less than a year we are going to see the first coronary bypass operation by telesurgery, and we will also see it being applied to other areas such as vascular and gynaecological surgery. the views of david rosin, a consultant surgeon at the uk’s st mary’s hospital, paddington, london, were given to the times newspaper ( . . ). he took the view that: for routine surgery, it will probably remain largely unnecessary, but for extremely specialised surgery which can be undertaken by very few surgeons throughout the world, then this is an absolute boon. even so, as with most advances in medicine that are related to the progress of high technology, it is difficult to foresee many of the ‘spin-off’ applications and uses. it could, for example, encourage the establishment of centres of surgical expertise which will make its services available both nationally and globally. in consequence we might see the hospitals as we know them change beyond recognition. there is, however, the certainty that these endeavours will bring about many of the changes robotics researchers and developers have predicted over the last decades. robotic pets . award winning robotic pets are potentia big business some readers will need convincing that robotic pets are indeed serious business. we need only to be reminded, however, that the global market for domestic robots is estimated at over £ billion and is more than double that of the world’s industrial robot market to be convinced of its potential. to support this sentiment the royal society for the encouragement of the arts, manufactures and commerce reports and surveys https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core (rsa) of the united kingdom, have introduced a new category into this year’s rsa student design awards* called “robot technology” the new category is spon- sored by the japan-based omron corporation and by europe’s leading independent technology services company the technology partnership plc. students were asked to design a user-friendly robotic companion that makes effective use of interactive and responsive technologies to support and enhance the life of its owner. . award winning work brendan cusworth bolger, university of northumbria at newcastle designed munk.e, a robotic companion designed to alleviate loneliness and provide fulfillment through nurture and pet therapy. munk.e is able to move around freely and utilises fuzzy logic systems to interpret his surroundings, allowing him to learn from experiences and respond to the needs of his owner. audio and tactile sensors process and analyse touch and noise to determine munk.e’s responses. munk.e’s are able to communicate and exchange information with each other using blue tooth technology to create an interactive community of munk.e’s and their owners. brendan cusworth bolger wins the omron attach- ment award worth £ , and will be working with omron’s product design division in tokyo and kyoto. chris tod, university of salford, wins the technology partnership attachment award worth £ , with his stress management robot, mystic. designed to provide the user with an outlet for their stress and anxiety, mystic responds to user interaction through touch, sound and movement sensors. mystic responds to this interaction through a range of facial expressions, phrases and sounds including burping, breaking wind and sneezing to distract the user in stressful situations such as the office or a doctor’s surgery. chris tod will undertake a -month attachment in the product engineering division, working in a multi- disciplinary team environment where new products for many of the world’s household names are developed. uk automation & control systems industry manager’s views on recession a recent report on the uk automation & control systems industry says that it is showing the signs of a recession. this was compiled early september prior to the world shattering events that followed. at that time over a third of the industry was reported to be exhibiting the signs of recession. the analysis finds companies must be adopting one of the four views on the current recession debate. these are, expressed as the “manager’s view on recession” • “i’m in a recession now” % of the industry is losing market and profitability. these companies are finding the market tight and highly competitive. • “there is no recession” % are showing no signs of recession at all. these companies are powering into the market and uncovering great returns. • “i’m preparing for the worst just in case” % are adopting a steady approach trying for profits and in most cases, are using these profits to pay off debts. • “i’ii blast my way through” % are going for it striving for as much market as they can get. currently though these companies are showing poor returns for their efforts. table i provides some sample data from the report. the assumpion made in the findings reported is that a manager’s view is inextricably linked to the performance of their own company. this has been used by the compilers to conclude how the ‘players’ in the automation & control systems industry are feeling over this recession theme. one senior analysts suggests that it is market pressure that is forcing companies to associate with a recession rather than a slowdown in the market. . more research over a third of the companies studied in the automation & control systems industry are feeling they are in a recession. these companies have seen sales decline a staggering . % on average over the last year. fifty seven percent are now at high financial risk according to the report and on average all of these companies are loss making. these companies tended to be the smaller companies and are seemingly getting left out of an otherwise healthy market. current market growth for the industry is a healthy * the rsa student design awards were established by the royal society for the encouragement of arts, manufactures and conference (rsa) in . each year over , students from the uk and mainland europe submit their designs for a wide variety of projects ranging frorn engineering design to fashion, glassware to postage stamps. award winning students are given the opportunity of work experience with the sponsoring companies or overseas travel. table . sample data from plimsoll portfolio analysis: automation & control systems. in recession not in recession prepared in case going for growth industry average sales growth – . % . % – . % . % . % profit margin – . % . % . % . % . % taking on more debt % % % % % % high financial risk % % % % % % sales per employee £ , £ , £ , £ , £ , number of companies percent of industry % % % % % reports and surveys https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core %. profitability is also low but on the right side of the red line at %. efficiencies seem to be good at the moment and sales per employee numbers are healthy at around £ , per person. comparing dismal performance with the exceptional, it located companies who grew way above the industry average with . %! these companies would definitely not consider themselves to be in a recession at the moment and who could blame them? for those companies who are preparing for the worst in case of a recession, it found overall debt had remained level in these companies. although profitability is steady at . %, their compromise seems to have been sales growth. last year saw a . % drop in their sales. motivation and future competitiveness for these companies should prove interesting. perhaps the most captivating are those companies who plan on going for growth no matter what the cost if a recession hits. these companies are growing at . % on average. like those companies most fearful of recession, all of these companies are on average loss makers. this cavalier approach to recession is no doubt brave but perhaps a bit too risky. the fact remains some companies thrive in a buoyant market and others lose ground commercially and finan- cially. it could be suggested that in this virtual game of snakes and ladders, companies fearful of sliding into recession might be the most attractive to acquirers, the report analysts suggested. . some conclusions* (i) research suggests that recession should not be meas- ured by industry as a whole. “to generalise on company performance seems outdated and flawed. recession will be more accurately determined by individual com- panies. it is up to individuals as to what stance they have on the issue and what strategies they will take to ensure survival,” says the report’s leading financial analyst. (ii) the more recent world events will, of course, have influenced the views of both managers and compilers. even so, by using a simple method of assessing the individual companies, the plimsoll portfolio analysis: automation & control systems aims to lay bare the performance of each of the top companies which in itself provides valuable data. obtaining the report: (readers of robotica will receive a % discount off the £ report when mentioning this article upon ordering). professor b.h. rudall norbert wiener institute and university of wales (uk) * plimsoll portfolio analysis: automation & control systems - plimsoll publishing limited, middlesbrough ts ja. fax: ( ) e-mail: plimsoll@dial.pipex.com and on www.plimsoll.co.uk reports and surveys https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core a summary of pediatric palliative care team structure and services as reported by centers caring for children with cancer. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /jpm. . corpus id: a summary of pediatric palliative care team structure and services as reported by centers caring for children with cancer. @article{weaver aso, title={a summary of pediatric palliative care team structure and services as reported by centers caring for children with cancer.}, author={m. weaver and a. rosenberg and julia tager and christopher s. wichman and l. wiener}, journal={journal of palliative medicine}, year={ }, volume={ }, pages={ - } } 	m. weaver, a. rosenberg, + authors l. wiener 	published 	medicine 	journal of palliative medicine background little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (ppc) providers serving children and adolescents with cancer. objective to summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. methods cross-sectional online survey about the palliative care domains determined by the psychosocial care of children… expand view on pubmed europepmc.org save to library create alert cite launch research feed share this paper citationsbackground citations view all figures, tables, and topics from this paper 	 table 	 figure 	 table 	 table 	 table 	 table view all figures & tables 	neoplasms 	palliative care 	pediatric oncology specialty 	precipitating factors 	workload 	malignant childhood neoplasm 	consultation citations citation type citation type 	all types 	cites results 	cites methods 	cites background has pdf publication type author more filters more filters filters sort by relevance sort by most influenced papers sort by citation count sort by recency defining the boundaries of palliative care in pediatric oncology. 	andrea cuviello, jessica c. raisanen, p. donohue, l. wiener, r. boss 	medicine 	journal of pain and symptom management 	 	 save alert research feed initiating palliative care referrals in pediatric oncology. 	andrea cuviello, jessica c. raisanen, p. donohue, l. wiener, r. boss 	medicine 	journal of pain and symptom management 	 	 save alert research feed specialist palliative care service for children with life-threatening conditions: a nationwide survey of availability and utilization. 	nobuyuki yotani, y. kizawa 	medicine 	journal of pain and symptom management 	 save alert research feed palliative care in pediatric oncology 	a. newman, s. crane, jessica l. spruit, samia alharrasi, c. bell 	medicine 	 save alert research feed sowing across a state: development and delivery of a grassroots pediatric palliative care nursing curriculum 	m. weaver, r. jenkins, + authors c. a. vail 	medicine 	journal of palliative care 	 	 save alert research feed home-based pediatric palliative care and electronic health: systematic mixed methods review 	heidi holmen, k. riiser, anette winger 	medicine 	journal of medical internet research 	 	 	 save alert research feed delivering pediatric palliative care: from denial, palliphobia, pallilalia to palliactive 	s. friedrichsdorf, e. bruera 	medicine 	children 	 	 	pdf save alert research feed oncologist conceptualizations of pediatric palliative care: challenges and definitions 	anat laronne, l. granek, l. wiener, p. feder-bubis, h. golan 	medicine 	supportive care in cancer 	 	view excerpt, cites background save alert research feed association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer 	katharine e brock, kristen e allen, + authors k. wasilewski-masker 	medicine 	supportive care in cancer 	 	pdf 	view excerpts, cites background save alert research feed specialist paediatric palliative care for children and young people with cancer: a mixed-methods systematic review 	j. taylor, a. booth, b. beresford, b. phillips, kath wright, l. fraser 	medicine 	palliative medicine 	 	 	 save alert research feed ... ... references showing - of references sort byrelevance most influenced papers recency pediatric palliative care programs in children’s hospitals: a cross-sectional national survey 	c. feudtner, james w womer, + authors d. weissman 	medicine 	pediatrics 	 	 	pdf save alert research feed palliative care as a standard of care in pediatric oncology 	m. weaver, katherine e heinze, + authors p. hinds 	medicine 	pediatric blood & cancer 	 	 	pdf 	view excerpts, references background save alert research feed increased access to palliative care and hospice services: opportunities to improve value in health care. 	d. meier 	medicine 	the milbank quarterly 	 	 	pdf save alert research feed identifying patients in need of a palliative care assessment in the hospital setting: a consensus report from the center to advance palliative care. 	d. weissman, d. meier 	medicine 	journal of palliative medicine 	 	 	pdf 	view excerpt, references background save alert research feed threading the cloak: palliative care education for care providers of adolescents and young adults with cancer 	l. wiener, m. weaver, c. bell, ursula m. sansom-daly 	medicine 	clinical oncology in adolescents and young adults 	 	 	pdf 	view excerpt, references background save alert research feed use of telehealth in pediatric palliative care. 	b. winegard, elissa g miller, nicholas b slamon 	medicine 	telemedicine journal and e-health : the official journal of the american telemedicine association 	 	 	view excerpt, references background save alert research feed palliative care afterhours 	natalie k. bradford, h. irving, a. smith, lee-anne pedersen, a. herbert 	medicine 	journal of pediatric oncology nursing : official journal of the association of pediatric oncology nurses 	 	 	view excerpt, references background save alert research feed standards for the psychosocial care of children with cancer and their families: an introduction to the special issue 	l. wiener, a. kazak, r. noll, a. patenaude, mary jo kupst 	medicine 	pediatric blood & cancer 	 	 	pdf 	view excerpt, references background save alert research feed the development of an instrument that can identify children with palliative care needs: the paediatric palliative screening scale (papas scale): a qualitative study approach 	e. bergsträsser, r. hain, j. pereira 	medicine 	bmc palliative care 	 	 	pdf save alert research feed implementing the psychosocial standards in pediatric cancer: current staffing and services available 	m. scialla, kimberly s. canter, + authors a. kazak 	medicine 	pediatric blood & cancer 	 	 	pdf 	view excerpts, references background save alert research feed ... ... related papers 	abstract 	figures, tables, and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue wp-p m- .ebi.ac.uk params is empty sys_ exception wp-p m- .ebi.ac.uk no params is empty exception params is empty / / - 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   counsellors’ experiences of using creativity in counselling clients with concurrent disorders: what helps and hinders by barbara smith b.a., the university of british columbia, m.ed., the university of british columbia, a thesis submitted in partial fulfillment of the requirements for the degree of master of arts in the faculty of graduate studies (counselling psychology) the university of british columbia (vancouver) august © barbara smith ( ) ii abstract this study investigated the experience of concurrent disorders counsellors using creativity in practice. in any given year, one in five individuals in canada experiences a mental health illness that can include a substance use disorder. lifetime prevalence estimates of individuals with substance use disorders and severe mental illness(es) varies from approximately % to % depending on the sample. individuals with concurrent disorders often also face additional physical health, financial, education, relational, housing, and criminal justice challenges. ultimately these issues cost the economy more than $ billion per year. in an era of limited resources, the need for creativity in assisting individuals with concurrent disorders seems extreme. however, there is little research investigating how concurrent disorders counsellors use creativity with their clients, particularly with regard to what nourishes and impedes their creativity. the results of this study provide insight into the factors that help and hinder concurrent disorders counsellors’ creativity in practice. eleven participants were interviewed using the enhanced critical incident technique. the study generated incidents, including incidents described as helpful to creativity in practice, incidents perceived as hindering creativity and wish list items. these incidents were grouped into categories. the helping categories were: personal factors, colleagues and collaboration, resources, education and training, client factors, autonomy, supportive management, client feedback, experience, personal or professional practice, meditation/mindfulness, and personal therapy. the hindering categories were: client factors, personal factors, bureaucracy, imposed models, iii unsupportive management, time pressure, lack of resources, colleagues, physical environment, and lack of special topics education and training. the wish list categories were: special topics education and training, resources, alternative therapies, therapeutic space, integrated co-occurring disorders centre, services integration, supportive management, time, time with creative people, client factors, autonomy, and preventative work. the findings show that personal and client factors along with colleagues, education and training, and management all play significant roles in helping and hindering concurrent disorders counsellors’ creativity. unique findings included meditation and personal therapy enhanced creativity, imposed models hindered creativity, and desires for increased services integration, and the creation of concurrent disorders centres with integrated services to enhance counsellors’ creativity. iv preface this research study was approved by the university of british columbia behavioural research ethics board on september , (h - ). v table of contents abstract……………………………………………………………………………….. ii preface ……………………………………………………………….………………... iv table of contents ……………………………………………………………….… v list of tables ………………………………….…………………………………….. vii list of figures ……………………………….……………………………………… viii acknowledgements ………………………………….…………………………… ix chapter : introduction …………………………….…………………….…… . definition of terms …………………………………………….…………………... . statement of the problem ……………………………………………….…………. . purpose of the study ……………………………………………….………………. . research question ………………………………………….……………………… chapter : literature review ……………………………………….………….. . concurrent disorders ……………………………………………………….……... . creativity …………………………………………………………….……………… . factors that help and hinder creativity ………………………………..………… . creativity and its application with clients with mental health concerns …….. including concurrent disorders chapter : methodology …………………………………………………….…. . the critical incident technique ……………………………………….………….. . participants …………………………………………………………..……………… . data collection ………………………………………………………….…………. . data analysis ……………………………………………………………………….. vi . rigour ………………………………………………………………………….……. . ethics ………………………………………………………………………….…….. chapter : findings ……………………………………………………………….. . helping critical incident categories ……………………………………………… . hindering critical incident categories ……………………………………………. . wish list item categories ………………………………………………………..… . contextual findings ………………………………….…………………………..… chapter : discussion ……………………………………………………….…… . research question …………………………………………………………….…… . fit with the literature ………………………………………………………….…… . unique findings ……………………………………………………………….…… . practical implications ………………………………………………………………. . personal observations …………………………………………………………...… . limitations ……………………………………………………………...…………… . future research ……………………………………………………………..……… . conclusion ……………………………………………………………………..…… references ……………………………………………………………………..……… appendices …………………………………………………………………….……… appendix a: interview protocol ………………………………………….……….…… appendix b: demographic information ………………………………………….…… appendix c: informed consent form ………………………………………….……… vii list of tables table . helping categories ………………………………………...….….………… table . hindering categories ………………………………………...….….……… table . wish list categories ………………………………………...….….……..… viii list of figures figure . photograph of a drawing of the “the drug monster” analogy………….. ix acknowledgements i would like to acknowledge that words are inadequate in thanking my supervisor dr. norm amundson for being a “kindred spirit” and fostering my growth both as a counsellor and as a researcher. i am very grateful for the opportunities he has provided during my studies at ubc, as well as for his encouragement, generous support, constructive feedback and “focusing”. i would also like to thank my committee members dr. ishu ishiyama, dr. anusha kassan, and dr. rod mccormick for their time and guidance. to the members our creativity group at ubc who volunteered their valuable time, experience and feedback, thank you so much. thank you to dr. jeff morley who gave of his time and support in emphasizing some findings. thank you also for the career advice. sometimes you just need that person who lets you know you are on the right path. to my participants who generously shared their time, experiences and insight; i had many moments of “wow, i need to try that”. thank you for your inspiring contributions to my research, and for confirming that the field of co-occurring disorders needs creativity to honour the clients and their complex journeys as well as the work that we do. thank you cleio for just being. finally, thank you to nathan whose love, support and supply chain expertise made this research possible. thank you for supporting me in “stormin’ the castle” and daring in many “dare to be great moments”. chapter : introduction when i decided to embark on a career transition into counselling, i took an assessment course taught by the former coordinator of the concurrent disorders program at st. paul’s hospital. this instructor opened my eyes to the rates of comorbid substance abuse and dependence with other axis i and axis ii disorders. after her course, i accepted a position as an employment counsellor. i now think of career counselling as having a “drugs, sex and rock and roll” dimension as so many of my career counselling clients were using substances, had mental health concerns, and trauma backgrounds. i found myself being creative, stepping beyond the usual resumés, cover letters, labour market information, and interviewing that as an employment counsellor i was expected to contain myself to while still practicing professionally and ethically. i listened empathically to clients and their concerns regarding prescription medications and cognitive behavioural therapy (cbt), and encouraged them to talk with their doctors, nurses, and other counsellors about their concerns. i tracked down bankruptcy counselling services, housing information, and referrals to gambling addictions services as well as the vancouver mental health teams. i encouraged clients to write fiction and poetry to help them process their feelings about job loss and other losses in their lives. i discussed nutrition, sleep, exercise and hydration. i took clients for walks in the park when things just were not progressing in order to develop relationships where clients felt they could disclose. i built “flex time” into my schedule to accommodate clients whose binge drinking meant they would likely be late to appointments, as late was better than not at all in my estimation. i listened to clients complain about having to see multiple service providers and the frustration they felt because of ongoing staff turnovers. i was challenged almost every day by clients with mental health and addictions challenges. to meet those challenges, i delved deeply into my imagination and adopted an attitude of flexibility to try and provide the support i could ethically offer within my scope of practice; “business as usual” was not going to help my clients meet their goals regarding employment. when i resigned to attend ubc’s counselling psychology program, one of my most challenging clients returned to see me. she was seeing her psychiatrist regularly as well as a holistic therapist, and she had been successful in obtaining the job she wanted. she thanked me and said that not once during our time together had she felt judged despite sharing with me some of the stories of strange things she saw. she said most people had given up on her. it became clear to me that counsellors, working with clients with concurrent disorders, could have a significant impact when the counsellors were flexible and creative. i started to research literature on the use of creativity in counselling and creativity in counselling with clients with co-occurring disorders and found that little was available. there was a great deal of information about creativity and mental illness, some about creativity and addictions, but little about when the two co-occur. most of what is in the literature equates creativity with the arts, but this seems limiting in the case of these clients given that they have so many barriers that require creative problem solving beyond the utilization of artistic methodologies. in terms of treatment, clients with concurrent disorders are often treated within the health care system, if they are treated at all, and therefore case management and empirically supported treatments (ests) including illness self management, psychopharmacology, assertive community treatment, family psychoeducation, and supported employment comprise integrated treatment for co-occurring disorders; cbt and motivational interviewing (mi) dominate the counselling treatment practices (drake et al., ; mueser et al., ; rosen et al., ; hubble et al., ). the literature supports that these approaches are effective, for some. many of my clients engaged in these treatments reported they felt they were dissatisfied and unengaged in the treatment process. frese, stanley, kress and vogel-scibilia ( ) point out “the scientific, objective, evidence- based approach emphasizes external scientific reality, whereas the recovery model stresses the importance of the phenomenological, subjective experiences and autonomous rights of persons who are in recovery. the two models will conflict under many circumstances” (p. ). if clinicians should be striving to help people become independent, engage in meaningful employment and satisfying relationships, and ultimately achieve good quality of life, how do we reconcile the objective with the subjective? as a counsellor, trained in existentialism, i wonder what else can and perhaps should be done to help clients with concurrent disorders improve their quality of life, and what role creativity can have within both the evidenced-based and recovery models? . definition of terms before commencing research into counselling clients with co-occurring disorders and creativity, one must define what is meant by the terms co-occurring disorders and creativity. concurrent disorders. the definition for concurrent disorders is fairly straight-forward in that the term refers to “any combination of mental health and substance use disorders” (centre for addictions and mental health (camh), , p. ). creativity. in contrast, creativity is relatively ill defined with many different definitions in the vast canon of creativity literature. however, within the literature, there is a distinction between eminent, “big c” creativity, which is seen as rare but having major impact on the related domain(s), and everyday “little c” creativity, which is conceptualized as daily problem solving and adapting to change as required (hennessey & amabile, ). although creativity in counselling could have a major impact on an individual client and those around him or her, generally we are referring to “little c” creativity within the counselling field. carson & becker ( ) argue that creativity is a mindset and a skill, which can be learned and improved upon. lumadue, munk and wooten ( ) wrote “creativity, as discussed within a mental health context, speaks in part to a therapist’s willingness and ability to responsibly and creatively think outside the box, while fostering in their clients their own creative and innovative capacities to consider and work through issues and problems” (p. ). for the purpose of this study, creativity will be defined using glover, ronning & reynolds’ (as cited in heppner et al., ) definition: creativity is a process that “involves the combination of information, often in unique and novel ways, that is ultimately used to elucidate or solve a client’s problem by extending the client’s experiential world in some way” (p. ). . statement of the problem at the policy level, mental health has been seen as one of the “orphan children” of medicare. as care has shifted to home and community based settings, the commission on the future of health care in canada ( ) recommended that mental health care be deemed as medically necessary services under the canada health act and therefore made available across the country. prior to the ’s, many individuals with mental health concerns were treated in hospitals, but despite a shift to a flawed policy of deinstitutionalization amid assertions of increased integration (mental health commission of canada (mhcc), ), the fact remains that mental health care is still one of the least integrated health care services. indeed mhcc acknowledges that work needs to be done to translate integration at the policy level into appropriate and effective collaboration at the direct service level which clients access. complicating matters, the levels of canadian governments have struggled over the last twenty years to balance operating budgets and reduce debts. with the federal government reducing transfer payments to the provinces who administer health services, the result has been unprecedented constraint and restructuring of health care budgets across the country (naylor, ), which may play a role in increased integration. working creatively seems essential when a major overhaul of the mental health care system including, addictions, involving multiple systems is required. the stakes are not small. in any given year, one in five individuals in canada experiences a mental health challenge or illness that profoundly affects them, their families, their employers, their communities, and ultimately costs the economy more than $ billion per year (mhcc, ). there are social justice implications as well. individuals with concurrent disorders are often marginalized. concurrent disorders affects groups of individuals who were already on the fringe of society before developing mental health and substance use concerns. for example, young first nations individuals are exposed to alcohol and substance abuse far more when compared to other canadians of the same age (commission on the future of health care in canada, ). there are moral, social and economic imperatives to improve services for individuals facing mental health and addictions challenges. at the direct service level, counselling clients with concurrent disorders can also be very challenging due to the complex nature of their concerns. in addition to mental health issues, substance use or dependence co-occurs and complicates matters further for client and counsellor. furthermore, often these clients have other issues such as employment instability, housing instability or homelessness, and being in conflict with the law to name just a few (camh, ). while these clients are often treated in community based healthcare settings, they often require other services as well. mhcc ( ) noted that poor coordination of services, lack of understanding, and stigma leave individuals with concurrent disorders with significant challenges in accessing appropriate treatments, services and supports. they call for improved coordination among physical health, mental health, developmental, education, social services and justice stakeholders, and for the improved knowledge and skills of service providers. in light of the budget challenges, marginalization of mental health within the health care system, stigma and discrimination, and the very nature of concurrent disorders, if there was ever a client population where counsellors needed to draw upon their creativity to work effectively, this is the group. in order to manage the complexity of these clients, all of whom are unique, it would seem that creativity would be necessary to effectively counsel them. indeed, creativity is considered to be a valuable skill in counselling (anderson, ogles, & weis, ; raskin, b; amundson, ). carson and becker ( ) suggest that creativity is very important in an era of brief, short-term, solution focused approaches as a result of the funding pressures on health care systems and the desire of clients and funders, tax payers, governments, and insurance companies, to find quick solutions to complex problems. given the valuable nature of creativity in counselling, it is not well understood and there is not much research regarding its role or effect in the process. in addition, with the emphasis on ests and manualized therapy, it is possible that creativity may actually be discouraged in practice (anderson et al., ). there is a great diversity of clients with concurrent disorders and their complex needs, so manualized est approaches to every client will fail some of the time; whereas, taking the creative, flexible approach advocated by amundson ( ) can involve the client in the process, and allow for collaboration between the client and their counsellor so that both parties are better able to “cut to the chase” (p. ). the problem therefore, with the need so great for innovation and creativity, and a call for est approaches within the profession, is a lack of research investigating the role of creativity in counselling and its impact on the counsellor and on the client. that problem is too big for the scope of this study, so i narrowed the problem down to identify how counsellors define creativity and what are the essential factors that enable and impede their creativity in practice to establish a foundation for future investigations on the role of creativity in counselling clients with concurrent disorders. due to the exploratory and developmental nature of this research, as there is a lack of existing research on the specific topic, there is a need to utilize a qualitative research method to give voice to the counsellors practicing in the field of concurrent disorders, to understand their experiences, and shed light specifically on what helps and hinders their creativity. . purpose of the study the purpose of the proposed study is to explore counsellors’ experiences of using creativity in counselling clients with concurrent disorders, with specific attention paid to what facilitates and impedes counsellors creativity in order to contribute to the limited literature on the topic. . research question the primary research question for this study is what helps and hinders concurrent disorders counsellors use of their creativity in practice? chapter : literature review before exploring how counsellors use creativity, it is important to understand the role that creativity plays within the context of counselling and its potential in working with clients with concurrent disorders. chapter two will review the current literature with regard to concurrent disorders, creativity, the factors that help and hinder creativity, and finally creativity and its application with clients with mental health concerns including concurrent disorders. . concurrent disorders as mentioned earlier, concurrent disorders consist of any combination of a mental health diagnosis and substance misuse (camh, ). the range of psychiatric disorders identified in the dsm iv-tr is too large to discuss here but a sample of disorders often discussed in co-occurring literature includes schizophrenia, mood disorders including bipolar disorder and major depression, and anxiety disorders including post-traumatic stress disorder (ptsd). the range of substances abused by clients with psychiatric disorders is also too large to discuss here but they include alcohol, caffeine, nicotine, gasoline, prescription medications including opiates and benzodiazepines, as well as illegal street drugs. the different combinations of mental health disorders and different combinations of substances used make clients with concurrent disorders some of the most challenging clients in the counselling profession. in addition to their mental health concerns, consequences of substance abuse for clients with concurrent disorders can include: housing instability; symptom relapses unrelated to life stressors; treatment noncompliance including failure to take prescribed medications, renew medications or attend therapeutic appointments; violent behaviour or threats of violence; sudden, unexplained mood shifts; suicidal ideation and suicide attempts; cognitive impairments including confusion, memory problems and difficulty planning; financial problems and poverty; criminal involvement and legal problems including theft, prostitution, shoplifting, disorderly conduct, driving while under the influence, and possession or trafficking of illegal street drugs; social isolation and social difficulties with family, friends and coworkers; employment difficulties including unstable work histories or chronic unemployment; and hygiene and health problems including personal hygiene, weight loss and medical problems such as hiv/aids, and hepatitis among others (camh, ; mueser et al, ). lifetime prevalence estimates of substance use disorders in clients with severe mental illness(es) varies from approximately % to % (mueser et al., ) depending on the sample; the variation has been attributed to factors including assessment methods, diagnostic criteria, settings and demographic characteristics (camh, ; mueser et al., ). however, in some populations prevalence rates can be even higher; for example the prevalence rate of substance abuse and dependence, trauma and specifically ptsd has been found to be as high as % in vietnam combat veterans (boudeywyns et al., ; davidson & van der kolk, ; mhcc, ). veterans are not the only group facing significant challenges with concurrent disorders. for more than years in canada, legislation and policies designed to increase the assimilation of first nations, inuit, and metis individuals to mainstream culture have undermined their mental health. residential schools and child welfare systems have interrupted or eliminated the ability of families and elders to raise children and transmit traditional parenting methods, language and cultural knowledge. the resulting cultural genocide has contributed to high rates of mental health problems, addictions, concurrent disorders and suicide, which are linked to additional problems including family violence and involvement with child welfare systems and ultimately the criminal justice systems (mhcc, ). treatment of concurrent disorders. mueser et al. ( ) emphasize cbt and mi as evidence-based practices in their definitive text on working with clients with concurrent disorders. however, they write that treatment programs will, do, and must vary according to the clients and their needs. despite their assertion that flexibility and adaptability are required, the concept of creativity does not appear in a prominent fashion in their writing. general practitioners deliver the largest proportion of primary mental health care in canada (camh, ; hutchinson et al., ) so often clients with concurrent disorders never see a counsellor. nevertheless, an integrated treatment approach involving interdisciplinary teams of psychiatrists, psychologists, social workers, occupational therapists and counsellors is considered best practice (camh, ; mueser et al., ). although the integrated approach is recognized in the literature as a best practice, many obstacles prevent this from actually happening and often for clients fortunate enough to receive treatment for both or more disorders, it is often from “separate, uncoordinated systems” (kopelowicz & liberman, ). clinicians own beliefs about the primacy of the disorders such as the mental health problem causes the addiction or the addiction causes the mental health problem can interfere with treatment, as few are trained in integrated treatment. depending on their belief about the origins of the disorders, clinicians will sometimes refuse to treat until what they consider the primary disorder is treated first (mueser et al., ). another possibility is that clients are often only treated for one disorder (kopelowicz & liberman, ) as clinicians often do not assess for other disorders. there is a diverse number of treatment settings in which clients can be seen. for example, withdrawal from substances can occur in a general hospital ward, a specialized hospital setting, a non-medical withdrawal setting, or in outpatient settings. counselling can take place in schools, workplaces, community settings, hospitals, forensic settings as well as substance abuse treatment centres (camh, ) coordinating different kinds of treatment between a different number of service providers can become extremely complicated. often clients tire of telling their stories over and over again to different professionals and terminate treatment out of frustration and fatigue. some treatment programs, especially those founded on the disease model of substance abuse, require abstinence in order for clients to receive treatment. however, for some clients it is not possible to stay clean long enough to receive treatment. harm reduction is being increasingly recognized by health care providers and researchers as effective in treating addictions and preventing diseases such as hiv/aids; consequently, needle exchange programs and transition housing are available in limited numbers in limited locations. although health care researchers and providers recognize the value of harm reduction approaches (b.c. centre for excellence in hiv/aids, ; marshall et al., ), there is resistance from the canadian federal government as evidenced by its court challenge of insite, the safe injection site located in the downtown east side of vancouver (cbc, ). there is an ongoing conflict between the ideology of treating addictions as a health care concern using harm reduction approaches supported by science, and the ideologies of abstinence-based models and the “war on drugs” despite declarations that the abstinence based legal policies involved in the war on drugs are a failure (alexander, ; bagley, ). subsequent conflict between four major systems, the british columbia government, the provincial health care authorities, the criminal justice system and the federal government, speaks to the significance of the challenges facing clients with concurrent disorders. there is significant stigma attached to both mental illness and addictions. the stigma, intolerance and discrimination individuals with concurrent disorders experience from family, friends, colleagues, employers, members of the public, even at times from the very service providers working to assist them becomes another barrier to clients seeking treatment (mhcc, ). bohart ( ) asserts that how one experiences oneself through interactions forms one’s sense, one’s feeling, of who one really is. if through countless interactions with friends, family, peers who use substances, and coworkers who stigmatize mental illness, then the client creates a pattern, a schema based on discrimination and stigma. it can take considerable time and effort to change self-concept and the accompanying thoughts, feelings and behaviours. therefore, a client in these circumstances is not necessarily resistant or unmotivated, s/he may be attempting, in part, to create a new schema, a new identity, and this process takes time. in order to address some of the challenges clients with mental health and addictions face, mhcc ( ) recently released a national mental health strategy. their vision is to promote mental health across the lifespan in homes, schools, and workplaces, and prevent mental illness and suicide wherever possible. another goal is to reduce the impact of mental health problems and illnesses and improve the mental health of the population with promotion and prevention efforts in everyday settings where they see the potential impact being the greatest. in order to accomplish these goals, access to the right combination of services, treatments and supports, when and where people need them, must be established. they envision a full range of services, treatments and supports including primary health care, community-based and specialized mental health services, peer support, supported housing, education and employment that would need to be integrated and coordinated. what mhcc proposes would revolutionize the care for individuals with concurrent disorders. in order to accomplish this goal, creativity will be required by those professionals engaged in designing and implementing policy, programs and services. . creativity clients with concurrent disorders have some of the most complex challenges, suggesting they have the most need for creative problem solving in their lives. there is some consensus creativity is necessary and integral to counselling generally, yet there is an absence in the literature on creativity in the counselling of clients with co- occurring disorders. how do we foster creative problem-solving skills in clients when counsellors themselves may not experience factors that encourage creativity in their practice? although creative thinking is supposedly desirable in many domains, creative individuals often go unrewarded and are even punished (egan, ). creativity has had a long history of association with therapy and healing. healthcare professionals have been known to use art, music, and writing since the ancient egyptians to prevent and treat mental health issues; the arts have been by utilized by african, chinese, japanese, greek, hebrew and indian cultures. more recently, freud, jung, maslow and may have advocated for the use of the arts in treatment. (crawford & patterson, ; gladding, ; henderson & gladding ). research investigating creativity in practice is complicated by the elusiveness of the concept (rosenthal, ) and its complexity as it seems to involve multiple components including imagination, play, openness and risk taking. although for the purpose of this study, a definition of creativity has been provided, there is no universally agreed upon definition for creativity (kottler and hecker, ) perhaps due to the complexity of the construct. salk “proposed that creativity rests on a ‘merging of intuition and reason’” (damasio, , p. ), so let us begin with exploring intuition and creativity in the literature. the role of intuition and flow in creativity. although kottler and hecker ( ) discuss the role of intuition, they do not explicitly incorporate it into conceptualization of the creative process. however, bohart ( ) states the ultimate foundation for creativity is intuition. bohart contends that people behave more mechanically when consciously guiding their behaviours than when we allow ourselves to act spontaneously and intuitively. he goes even further to suggest that people function more effectively when they act without thinking. what bohart describes, is csiksentmihaliyi’s idea of flow which he defines as “ the feeling when things [are] “going well as an almost automatic, effortless, yet highly focused state of consciousness” ( , p. ) the role of imagination in creativity. when non-mandated clients present for counselling, are they not imagining at least the possibility of a different way of being? imagination is the process of bringing to mind that which is not present to our senses in our immediate environment (robinson, ) and has a role in the counselling process. also, imagination constitutes another way of knowing (brueggemann, ). however, amundson ( ) points out that clients often present for counselling because they face a “crisis of imagination” (p. ). brueggemann notes that in order to create a vision of alternative possibilities, one must imagine possibilities before one can implement them (as cited in leggo, ) in the counselling process. however, counsellors may also be, at times, faced with crises of imagination as they too must be able to imagine possibilities for clients as well as possibilities in the therapeutic work. if imagination must come before implementation, then imagination is an essential part of recovery and therefore essential to counselling. an example of the successful use of imagination and creativity in trauma-focused groups would be the preparation of an imaginary gift for another member as part of feedback to others during termination. when giving feedback, group members do so empathically, imaginatively, and playfully (herman, ) as they attempt to create a self through fantasy. in previous therapeutic stages, imagination can be occupied by repetition of the trauma(s) and can be limited by a sense of hopelessness and helplessness. self- regulation developed through earlier stages in the therapeutic process enables the therapist and client to utilize the client’s ability to imagine and play as they experiment with skills, learning from experience to build up a tolerance for failure, and to enjoy successes. rankin and taucher ( ) have found the integration of art inventions increases the possibility for more effective and efficient therapeutic progress with traumatized clients with results including increased self disclosure, improved mood, less frequent distress, less loneliness, reduced anxiety and increased satisfaction with treatment (pizzaro, ). the role of play in creativity and counselling. engaging in creativity usually involves using the imagination and playing with concepts and ideas (robinson, ), and living creatively is a healthy state; however, creative living can be lost and individuals can feel as though the meaning of their very lives is lost (winnicott, ; yalom, ). winnicott also wrote on the role of play in treatment, psychotherapy takes place in the overlap of two areas of playing, that of the patient and that of the therapist. psychotherapy has to do with two people playing together. the corollary of this is that where playing is not possible then the work done by the therapist is directed towards bringing the patient from a state of not being able to play into a state of being able to play (p. ). if therapy’s purpose is to help individuals return to a healthy state, then play and creativity play a significant role according to winnicott. he further asserts it is only in play that the person is able to be creative and take advantage of their whole personality. now neuroscience is starting to support the importance of play in human wellness. creativity, play and neuroscience. neuroscience is beginning to explore play as a primary system and there is now discussion that “play may be the most underutilized emotional force that could have remarkable benefits in psychotherapy” (panksepp, , p. ). panksepp argues that it is unlikely that there is any stronger aid than the joyousness of play for working effectively with psychiatric distress. he advocates for music and the other arts to be included into all therapies. so neuroscientists are beginning to share psychodynamic therapists’ thoughts on creativity, imagination and play. individual counsellors need to create new experiences for clients in specialized settings and creative play can provide these experiences (winnicott, ). if the goal is to help clients live a good life then, any therapist who can capture the therapeutic moment in mutually shared play episodes will have brought the client to the gateway of happy living. to the extent that the client can be held there, in both body and mind, the therapist will have offered one of the greatest emotional gifts that psychotherapy … can ever provide (panksepp, p. ). creativity as an element of the therapeutic process. hecker and kottler ( ) argue that creativity is not innate, rather it is a learned skill that can be developed over time and incorporated into psychotherapy. they add “frustration is probably one of the most popular mothers of creativity” (p. ) and carson and becker ( ) concur, emphasizing that most counsellors feel stuck with some clients some of the time and that creativity can be part of a process born of frustration or the need for a solution, facilitating a break through. raskin ( a) argues that much therapy results from in the moment improvisation which is germane to assessment, diagnosis, and therapy as well as to the counsellors practice and life. indeed, bohart ( ) concurs that moment-by-moment responses are by definition creative. some researchers identify four steps in the creative process (carson & becker, ; kottler & hecker, ). the first step is preparation in which conscious work is done to solve the problem. step two is incubation, which is essentially a rest period; the period can be short or long. step three is inspiration. inspiration can occur for the client, or the counsellor or between the client and the counsellor. inspiration involves divergent thinking where a new, novel approach to solving the problem emerges. egan ( ) defines divergent thinking as “more than one way to manage a problem or develop an opportunity” (p. ). the final step is verification where the client and counsellor test the product of the inspiration. verification returns us to convergent thinking wherein we use reasoning that synthesizes relevant data to make critical judgments and arrive at a conclusion (carson & becker, ; gladding, ; kottler & hecker, ) gladding adds two steps to the four step creative process identified above. after incubation, he subdivides “inspiration” into ideation where ideas are created but not judged; he classifies ideation as a form of thinking. next, he adds the concept of illumination, which he sees as a “breakthrough” in one’s thinking. bohart’s “intuition” is different from “illumination” in that intuition operates on an unconscious level; whereas, illumination or the “a-ha” moment requires consciousness. although gladding, and others, emphasize divergent thinking as the central feature of creativity, he adds the idea of evaluation, which requires convergent thinking. given that many define creativity as producing something novel and useful, divergent thinking is necessary but insufficient. convergent thinking is required to critically evaluate all the possibilities generated in order to select and verify an appropriate intervention and know why (robinson, ; smith, ) one should responsibly and ethically utilize it with a specific client with specific concerns at a specific time. . factors that help and hinder creativity there appears to be little discussion in the literature about creativity in counselling clients with concurrent disorders, and specifically the factors, which enhance or limit creativity in counselling practice. given the limited literature, examining amabile and gryskiewicz’s ( ) critical incident technique study investigating the helping and hindering factors of creativity in research and development scientists provides an initial framework. they found four general categories influencing creativity: environmental stimulants and environmental obstacles as well as helpful personal qualities and unhelpful personal qualities. specifically the helpful personal factors included: intrinsic motivation; ability and experience which included problem solving abilities, creative thinking strategies, talent and expertise, and broad and general knowledge in many fields; risk-orientation including being unconventional and willing to take risks, being flexible and attracted to challenging situations; social skills including being able to establish and maintain good rapport, being a good listener, and being open to others’ ideas; and other personal qualities such as curiosity, and being naïve or unbiased about problems helped the scientists’ creativity. in terms of helpful environmental factors, they found autonomy in how to work and meet constraints established by others; encouragement from management in terms of enthusiasm and support; access to resources such as people, funding, information and time; recognition and constructive feedback; being challenged in a realistic manner; other project management features such as political support for a project, shelter from outside pressures; and finally other organizational features such as cooperation and collaboration, good communication, mechanisms for considering new ideas, minimal bureaucracy and formal procedures along with few political problems. the hindering factors also fell into personal and environmental categories. lack of freedom in deciding how to do one’s work was the single most cited type of hindering incident in their study. one participant described how the person was expected to follow a prescribed path as dictated and was not allowed to deviate. other hindering environmental factors emerged including: organizational indifference; evaluation pressure; overemphasis on maintaining the status quo; resistance to innovation; lack of resources; managers who did not shelter individuals from outside pressures or were incompetent or did not understand; the lack of a collaborative atmosphere; overly formal and complex procedures and political problems. the hindering personal factors they identified included: the lack of courage in addressing a difficult problem, dealing with environmental factors, pessimism, being too cautious, risk aversive, inflexible, and unhappiness; and a lack of skill or experience. amabile et al. ( ) further suggested that organizational encouragement, supervisory encouragement, work group encouragement, relatively high levels of autonomy in day-to-day work, adequate resources, and urgent, intellectually challenging work pressure positively influence creativity, while excessive workload pressure, internal conflict, conservatism and formal, rigid management structures hinder creativity. in light of amabile’s and her colleagues work, researchers investigating matters directly related to counselling have identified how restrictions such as cautious or controlling administrators in managed care settings may inhibit or prevent creativity (anderson et al., ; carson & becker, ). indeed mills ( ) found that unsupportive supervisors, the lack of collegial support, rules and expectations as well as institutions not valuing creativity all hindered career counsellors’ creativity. additionally, in the case of clients with concurrent disorders, treatment decisions can be very complex using treatment algorithms that map decision points (drake et al., ) and in a best-practices situation, are made by an interdisciplinary team. however, different team members, general practitioners, psychiatrists, nurses, psychologists, counsellors, and occupational therapists have different professional philosophies and, of course, their own individual philosophies. finding space to introduce creativity into treatment where the team has to agree, can be challenging. furthermore, the very spaces in which counselling take place, the times allotted to sessions, scheduling and even the definition of the counselling problem may inhibit creative activities (amundson, ). for example, the definition of addictions as a disease, emphasized in healthcare based treatment, could inhibit creativity because it narrowly construes both the cause and the treatment of substance use. it also denies alternate theories of addiction such as socio-cultural explanations of addiction for which there is considerable empirical support (chi, lubben & kitano, ; kandel & andrews, ; mckirnan & peterson, ; mitic, ; wallace, ). client and extratherapeutic factors. clients may help or hinder counsellor creativity (anderson et al., ; mills, ). counsellors reported that clients who were willing to engage creatively in a collaborative manner and take risks fostered their creativity. however clients who wanted quick fixes, did not seem engaged, seemed resistant to provide information, or appeared to be resistant to creativity hindered counsellors’ creativity (mills, ). gladding asserted that creating can be perceived as fun, but for many individuals, that is not the case. often people have negative feelings about their ability to be creative, for example around art, dance, music, singing or theatre. amundson ( ) emphasizes that when utilizing approaches that involve creative arts activities like drawing, it is important to impress upon the client that it is not about the quality of the final product but more about the process in order to address client apprehension. at the end of the day, clients may refuse to participate and counsellors are ethically required to respect their clients’ wishes. the stages of change (prochaska & diclemente, ) model is used to describe a series of stages individuals go through to change behaviours and each of these stages is associated with client’s motivational state related to their readiness to make changes (hubble et al., ; mueser et al., ). clients in the pre- contemplative and contemplative stages can be labeled and seen as unmotivated. however, some researchers and practitioners believe that there is no such thing as an unmotivated client; effective therapists take the time to identify, understand and attend to client goals in order to collaborate and generate successful, client-centred outcomes. counsellors should leverage clients’ resources and strengths to promote therapeutic progress. counsellors who focus only on problems and ignore strengths have been found to be less successful; whereas, counsellors who attended to client strengths from the beginning of counselling saw greater progress (bohart & tallman, ). part of creativity therefore may be identifying what motivates clients and drawing upon their resources. a resource that may be helpful with creativity is time and space. amundson ( ) writes that time to reflect on events and to generate new responses are tied to creativity and problem solving skills. the time and space may not occur during session so the counsellor may not see the client progress in this way. also, a challenge with clients with concurrent disorders is that they may use substances in between sessions, if not right before or right after sessions, which may interfere with finding space to reflect. one must be able to think clearly under challenging circumstances to solve problems effectively, but clients with co-occurring disorders may not be able to think clearly because they are abusing substances or may be experiencing psychiatric symptoms that impede their ability to reflect. in addition, the reflective activity may be painful or difficult because of disorganization, trauma, physical health problems such as traumatic brain injuries, cognitive dulling by prescription medications, or the use of street drugs. clients may abuse prescription medications or street drugs precisely to avoid reflective activities. other clients factors that may affect both counsellor creativity or their ability to change may include their existing social support network, their socioeconomic status including employment, and life events. it is important to always start “where the client is at” (hubble et al., ). gladding suggests limitations involving a specific population: artists. he states that artists may not benefit from the incorporation of the visual arts into the counselling process, indeed they may be counterproductive, because the use of the arts may be perceived as work. also, they may not see counselling, with or without art, as a non- artistic process; therefore, incorporating the arts into the therapeutic process may be frustrating and distracting. models and techniques. cbt and mi along with group therapy, psychoeducation, case management and family counselling are all recommended as best practices (camh, ; mueser et al., ). however, hubble et al. ( ) state that research data reveals that all treatment approaches are effective and call for the eradication of the “doctrine of specificity” which is the concept that specific treatments have differing or better outcomes for specific disorders. the apa calls for the use of the best research available in combination with judgment and expertise and the patient’s context and preferences (bohart & tallman, ). clients are agentive and are not objects who present for clients to have something done to them. with the placebo affect known and the common factors research that exists that indicates that there is little difference between techniques, they can all be seen as helpful. in addition, technique only accounts for roughly % of client change with the important factor being the consistency with which the counsellor holds to his or her beliefs and values while encouraging client hope (hubble et al., ). therefore if creativity is a core value and belief, it may very well play a role in counselling effectiveness. in terms of methods or techniques that aid in counsellor creativity, mills ( ) found that counsellors used approaches like doodling or figurines to help them be creative. as stated earlier, collaboration played a role as well in aiding creativity. therapeutic relationship. a positive therapeutic relationship is one of the best predictors of positive outcomes in counselling (hubble et al., ). the creative use of the relationship, by its very nature, resists attempts to be confined, standardized, therapy manualized, treatment packaged, predicted, controlled, tamed, neurotransmitted, behaviourally managed, protocol driven, manage care approved, and empirically validated. that is, it defies all attempts to subjugate its essence” (anderson et al., , p. ). in an era of manualized treatment in healthcare settings, such as the ones clients with concurrent disorders are treated in, creativity in the therapeutic alliance has not yet been measured and therefore is often discounted in evaluating client outcomes. yet anderson et al. ( ) argue that creative therapists have a wider range of interpersonal responses they can use in working with clients to achieve a beneficial effect on the relationship. mills’ ( ) research found that counsellors who experienced trust in a collaborative relationship had benefits to their creativity. therapist factors. carson and becker ( ) suggest that the counsellor’s own inhibitions and doubts can inhibit creativity. hazler ( ) writes “trying to do something creative as a therapist or educator is very threatening to the ego for anyone and even more so for those of us with a bank of self doubts” (p. ). fear of failure can inhibit the therapist, yet “creativity in therapy demands openness and experimentation” (anderson et al., , p. ). with an emphasis on accountability, unwillingness to risk failure could impede counsellor creativity. gelatt’s ( ) concept of positive uncertainty applies to counsellors as well as clients. in order to successfully apply creativity “the counsellor has to have the courage of letting go and a readiness to stand in the openness in a kind of not-knowing situation and mood” (hansen & amundson, , p. ). conversely, amabile and kramer ( ) found that even small degrees of progress enhanced intrinsic motivation which helped creativity. although they were not researching counsellors, it may be that their findings relate to the human condition and therefore the counsellor experiencing success, perhaps in witnessing client progress and success may help their creativity. mills ( ) study is one of the few studies examining creativity as a therapist factor. although she examined the counsellors’ perceptions of their own creativity, which was enhanced by their experience, knowledge and personal characteristics such as curiosity, openness and dedication to clients, it would be interesting to know if the clients experienced the counsellors as creative and whether or not they reported positive outcomes. further research in this area is warranted. mills also found that some therapist traits hindered creativity as well, such as mood, lack of confidence and lack of sleep. less is known about therapist factors generally because there has been a decline in interest by researchers (beutler et al., ). the creativity of counsellors could be one of the factors that influences outcome but more research is needed in this area. training. robinson ( ) argues that individuals grow out of creativity and/or are educated out of it, which is a severe limitation of creativity. however, harrawood et al.’s ( ) use of experiential, creative activities including dance (michaels, ), journal writing, and music and lyrics to train counsellors who will work with clients with addictions to understand substance cravings demonstrates that the use of creativity can be a powerful learning tool. if creative, experiential activities can be used in counsellor education programs to enhance creativity and demonstrate other ways of knowing for counsellors, it is not a great leap to think that similar activities, reconfigured for clients could assist them in recognizing and knowing themselves in different ways. . creativity and its application with clients with mental health concerns including concurrent disorders gladding ( ) articulates advantages to incorporating creative arts into one’s counselling practice. firstly, he suggests that using the arts allows for the incorporation of playfulness. secondly, gladding suggests that using the arts promotes communication. gladding goes on to assert that adding the arts to ones practice can assist clients to “recognize the multiple natures of themselves and the world …. [because] the creative arts allow clients to express themselves externally in multiple ways depending on the strengths they discover in themselves” (p. ). creative arts therapies by its nature results in some creative product that is the client’s own ”expression of self, whether it be a dance or a picture. often, the first creations of a recovering addict are disclosures of extreme shame, anguish, and rage” (johnson, , p. ). the externalization process of creative acts allow clients to conceptualize their challenges as outside of themselves and therefore changeable (raskin, b). it is in creativity that the person discovers her or himself (winnicott, ; yalom, ). another advantage identified by gladding is that the arts may allow and encourage less or non-verbal clients to participate in the therapeutic relationship. he also sees the arts as a tool in promoting diagnoses, understanding and dialogue in the therapeutic relationship, which may be particularly useful when working with resistant or reluctant clients. specific to the visual arts, gladding emphasizes they are very flexible because they can be combined effectively and easily with other creative arts including movement and writing. finally, gladding cites the arts’ perceived objectivity; the arts can be seen as neutral, non-threatening and possibly fun so there is no or less resistance from clients. kottler and hecker ( ) suggest that creativity in therapy could help increase client creativity in their problem-solving abilities, which would certainly be advantageous. foon ( , as cited in kottler and hecker) states that to utilize creativity one must develop an internal sense of control for part of creativity involves breaking with convention. a key goal for many clients with concurrent disorders is that of self-regulation; therefore, developing creativity as a skill that requires self-regulation may very well be therapeutic and kill two birds with one stone. for it is not just creativity that is important, but the harnessing of it so that one can solve problems successfully. gladding’s assertion that the arts may be seen as fun may be connected to odell-miller et al.’s ( ) implicitly stated advantage to utilizing the creative arts. they surveyed art therapists who anecdotally reported that clients with ongoing mental health issues seemed to achieve a good working alliance with therapists within the first six months of treatment more readily when art forms were used compared to verbal therapy only in some cases. these clients were significantly more likely to remain in treatment, to comply with prescribed medications and achieved better outcomes after two years, with medication, than clients who did not participate in arts therapies. although i am arguing for the use of creative approaches, one has to be cautious with this information because . these assertions are anecdotal and . it might be fair to assume that art therapists are biased, for to say that the arts are ineffective would refute their entire practice and it is difficult to conceive how one might practice from a particular perspective if one did not believe in its efficacy. crawford and patterson ( ) examined studies involving the use of creative arts therapies with clients with schizophrenia and discovered that attendance rates at sessions, both group and individual, were high. their conclusion regarding participation rates could also be tied to gladding’s assertion that one advantage is the neutrality of art, and odell-miller et al.’s ( ) finding that art can play an integral role in establishing an effective therapeutic relationship. if recruitment and retention in treatment is of primary concern with clients with concurrent disorders (mueser et al., ), incorporating art into sessions could be a useful recruitment and retention technique. crawford and patterson ( ) found the use of art therapeutically is associated with improvements in mental health and social functioning. they also found that there was some evidence that suggested that arts had a greater impact on negative and general symptoms including depression, lack of energy and motivation. they pointed out that negative symptoms are often less responsive to antipsychotic medications. if negative symptoms are a barrier to achieving the client’s goal(s) in counselling in terms of energy and motivation and the application of art is more effective than antipsychotic medication within this context, then creative therapies could be an effective tool in the toolkit to augment other ests including cbt and mi. creativity and counselling clients with concurrent disorders. there is some literature that explores creativity, particularly the use of creative arts, with clients who have mental illnesses and there is some literature involving the use of the creative arts with clients with substance abuse problems. however, a search for literature on creativity and counselling clients with co-occurring disorders yielded only two scholarly articles, both written by the same group of researchers (drew, et al., ; gee, et al., ) published in the same journal. drew et al. found that the creative use of the card game uno in their case study with an adolescent in a mandated treatment program facilitated client self-disclosure, a necessary process in counselling. the use of the game also promoted the therapeutic alliance, one of the common factors, when the counsellor risked appropriate and ethical self-disclosure during gameplay. indeed, the researchers reported that despite the mandated setting, the client expressed liking therapy, felt he was safe to challenge himself and felt connected to the counsellor. the researchers concluded these outcomes were due to the fact that the counsellor shared vulnerable moments and incorporated empathy at moments facilitated by the game. drew et al.’s third finding was that their uno intervention increased client investment in the therapeutic process. clients with co-occurring disorders are notorious as a group for being difficult to recruit and retain in counselling (mueser et al., ). drew et al.’s paper is an important work demonstrating that creativity in introducing novel techniques like card games has a role to play in counselling this population. unfortunately, the problem with this study is that it was limited to a single subject. gee et al., also examined the use of having clients with co-occurring disorders create “grief and hope boxes” to facilitate self-disclosure. gee et al. argue that “using creativity creates a space for change and introspection” (p. ) when clients struggle to disclose. this study is a variation on the theme discussed earlier in their other study; however, in this study, clients are actively engaged in a creative process where they are creating a product. although no known formal research has been undertaken on the program, the ilisaqsivik family resource centre in clyde river, nunavut provides counselling services by elders, family, addictions and youth counsellors to almost individuals monthly. more than youth participated in an innovative hip hop program that played a role in reducing self-harm, smoking, and marijuana use, and as well as contributing to an decrease in crime rates and suicidal ideation (mhcc, ). one size does not fit all. if we accept that clients are unique individuals with different strengths, abilities, and ways of knowing and interacting in the world, then one consistent approach in counselling cannot possibly be successful in all cases. if this is the case, then creativity is necessary to be an effective helper in the counselling relationships especially with clients with as complex concerns as those with concurrent disorders. shebib ( ) does not use the term creativity; rather he refers to “versatility” where he articulates the need for counsellors to work from a model to explore problems and help clients build solutions but that the model has to be adapted to each client. versatility indicates that counsellors have several tools in the toolbox to choose from as they adapt to each client, refining their approach when something does not work until they find something that does. gladding ( ) argues that “without creativity, there would not be counselling” (p. ). bohart ( ) posits that creativity is an inherent part of human behaviour and inherent to psychotherapy. others say creativity is “essential” (carson & becker, ; gee et al., ; hecker & kottler, ). the limited number of articles related to creativity in counselling clients with concurrent disorders supports the notion that this study to investigate what helps and hinders these counsellors to incorporate creativity into counselling processes will contribute to the field. in light of the paucity of literature, a qualitative approach is appropriate at this early stage of inquiry in order to illuminate the experience of counsellors. chapter : methodology chapter three discusses the critical incident technique (cit) research method, and procedures to be used in the collection and analysis of data in the proposed study. first, i will summarize the history of the method, the characteristics of the method, cit’s suitability for exploring the research question, and the underlying epistemology. then, i will describe participant recruitment and selection, data collection and analysis, representation of the findings, and limitations. a discussion of rigour will follow. . the critical incident technique history of the method. critical incident technique (cit) was developed during world war ii by flanagan ( ) during research of the aviation psychology program of the united states army air forces (butterfield, borgen, amundson, & maglio, ). cit was originally used to identify critical factors required for success in jobs to create a functional description of an activity. since flanagan’s article, cit has moved from behavioural, task analysis and direct observation to retrospective self-report. cit has been developed into a qualitative research methodology used to explore topics in many disciplines including education, industrial and organizational psychology, marketing, nursing, and social work, (butterfield et al., ). woolsey ( ) focused on utilizing cit in counselling and psychology research (as cited in butterfield et al., ). woolsey identified cit’s strengths for investigating psychological constructs and experiences. these strengths include its ability to “encompass factual happenings, qualities or attributes, not just critical incidents ... its capacity to explore differences or turning points ... its utility as both a foundational/ exploratory tool in the early stages of research, and its role in building theories or models" (butterfield et al., , p. ). characteristics of cit as an analysis method. cit shares commonalities with other qualitative research methods; however, there are features of cit that separate it from other methods. the first is the focus on critical incidents (cis) that aid in the facilitation of, or hinder an activity or the experience of an activity. the second is that cit originated in organizational and industrial psychology. thirdly, the researcher collects data primarily through interviews, followed by analysis, which involves identifying incidents and forming categories that emerge from the data. lastly, cit consists of the creation of categories with operational definitions and self-descriptive titles based on emerging patterns in the data (butterfield et al., ). cit’s main goal is to generate a categorization scheme that identifies and describes cis in a meaningful way, while retaining comprehensiveness, specificity and validity (butterfield et al., ). flanagan ( ) defined an incident as a human activity that is complete and can be observed in a way that allows for inferences or predications (butterfield et al., ). to be critical, the incident must be real and significantly affect the outcome of an activity (butterfield et al., ). cit has five components: “( ) ascertaining the general aims of the activity being studied; ( ) making plans and setting specifications; ( ) collecting the data; ( ) analyzing the data; and ( ) interpreting the data and reporting the results” (butterfield et al., , p. ). cit collects descriptive data about cis from the perspective of the participant (butterfield, borgen, maglio, & amundson, ). finally, cit allows for the consideration of the cognitive, affective, and behavioural dimensions, including how incidents are managed, and the perceived effects (butterfield et al., ). suitability. cit enables researchers to investigate “effective and ineffective ways of doing something, looking at helping and hindering factors, collecting functional or behavioural descriptions of events or problems, examining success and failure, and determining characteristics that are critical to important aspects of an activity or event” (butterfield et al., , p. ). in addition to critical incidents, cit reveals facts, experiences, turning points, and qualities (butterfield et al., ). it is an appropriate and helpful technique in the beginning phases of research, when little is known about a topic (butterfield et al., ) like creativity in counselling clients with concurrent disorders. the systematic nature of cit that many researchers demand for credibility’s sake, and its flexible and exploratory attributes (butterfield et al., ), make it particularly well-suited to this proposed study. creativity in counselling clients with concurrent disorders as a research topic is almost non-existent, so there is almost no understanding of what facilitates or obstructs these counsellors from engaging in creative practices. thus, this study sought to utilize cit to explore and gather data on the factors that help and hinder concurrent disorders counsellors in capitalizing on creativity in their practices. enhanced cit (ecit), which conforms to the traditional aspects of cit but adds context, wish list items, and credibility checks, was used in this study. contextual, demographic questions were posed at the start of the interview to provide background information to situate the cit data (butterfield, et al., ). i also asked participants about a wish list (wl) to gather data about possible “people, supports, information, programs, and so on, that were not present at the time of the participant’s experience, but that those involved believed would have been helpful” (butterfield et al., , p. ). finally, nine credibility checks were incorporated into the data analysis to increase the trustworthiness of the study. the purpose of the credibility checks and their details will be described in the epistemology and rigour sections below. epistemology. cit hails from the social constructivist tradition (n. amundson, personal communication, may , ). as such, it is an approach used to understand multiple participant realities and the meanings created by them in specific contexts, in this case their counselling practices. consequently, in this worldview, meaning is subjective, varied and multiple (cresswell, ; geelan, ; phillips, ). in addition, because constructivism relies on open-ended questions and this study utilizes a semi- structured questionnaire to provide a framework, i, as the researcher, co-construct reality and its meaning between myself and the participants. consequently, it is important for me to acknowledge that i have studied concurrent disorders and completed part of my training for my master’s degree as a concurrent disorders counsellor. some of the participants saw me as a colleague, others as a student, and others as a researcher. during the interviews, my goal was to “elicit rich and detailed descriptions of the participant’s experience, then to develop clear descriptions of categories that organize their experience into meaningful and useful patterns” (morley, , p. ). although researchers using cit attempt to add an element of objectivity by identifying concrete incidents and counting them, they still emerge from the subjective experiences of the participants and the researcher. with the resulting co-construction of meaning, to ensure the utility of the categories, validation checks involving the participants, two independent judges and two experts were employed to establish trustworthiness; more details about this process will be described in the rigour section. however, it should be noted that the independent judges and experts bring their subjective experiences to the process, reinforcing that meaning is socially constructed. . participants in cit studies, the number of participants in a sample is determined by the number of cis reported in the interview and whether the incidents represent sufficient coverage of the activity being investigated (butterfield et al., ). therefore, participant interviews continue until data exhaustiveness or saturation occurs. exhaustiveness is defined as the point at which participants no longer describe new cis or wl items, therefore no new categories are needed (butterfield et al., ). eleven counsellors participated in this study, who provided enough critical incidents and wish list items to meet the criteria for data exhaustiveness. participant recruitment and selection. initially, a faculty member of the co-occurring disorders program at douglas college sent an email to contacts who would to participate in the study. however, no volunteers emerged, so networking to generate a snowball sample commenced. eleven participants were identified and screened by email. all volunteers met the inclusion criteria. participants were professionals who currently counsel clients with concurrent disorders. the participants all had master’s degrees in counselling psychology, social work, or leadership with extensive experience in addictions or psychiatric nursing along with working with clients with concurrent disorders. all interviews were conducted in english. participant demographics. six women and five men currently counselling clients with co-occurring disorders were interviewed for this study. all of the participants spoke english as their first language. all eleven participants had master’s degrees: six had m.a.s counselling psychology, two had m.ed.s counselling psychology, one had an msw, and two had m.a.s leadership with backgrounds in substance abuse counselling and psychiatric nursing and over twenty years of experience with the client population. the participants’ ages ranged from to years, with the average age being . all participants worked in health care settings, with one working in a residential health care setting, three in forensic psychiatry, and seven in community health care. the average years of experience in health care was . , while their average years of experience working with clients with co-occurring disorders was . the average number of years in their current positions was . with one outlier who had worked in her area for years. some of the participants had multiple roles and responsibilities. two specialized in group counselling but saw clients individually as well. one specialized in outreach and engagement, and three had administrative functions including clinical supervision and coordination duties in addition to their counselling responsibilities. one of these participants counselled clients % of the time and completed administrative responsibilities % of the time, while the remaining two participants with administrative functions were primarily counselling. participants of all cultural backgrounds were welcome to participate in the study; however, no visible minorities emerged in the sample and demographic information about culture was not collected. all participants appeared to be caucasian which may be due to the nature of snowball samples, or decision making process to enter the field of concurrent disorders, or perhaps career decision making of individuals choosing to enter the counselling profession. the possible role of culture will be discussed further in the limitations section. . data collection data collection involved eleven in-person interviews and follow-up contacts. the duration of interviews varied from forty-five minutes to two and a half hours; these interviews were the primary source of data. all participants reviewed the informed consent form (appendix b). each signed two copies and retained one copy ensuring that they understood the purpose of the study, confidentiality, privacy, and their rights as research participants. a semi-structured interview protocol provided a standardized framework for each interview, which is included as appendix a. the protocol consisted of a contextual component followed by open-ended questions in order to allow participants to provide detailed descriptions of how they view and use creativity in their counselling practice, as well as what factors help and hinder their creativity. although a protocol was used, i asked clarifying and follow-up questions as the interviews progressed to ensure clarity and completion of answers. at the end of the interviews, the participants completed a demographic questionnaire that was used to describe the participant sample. during the interviews, participants described their definitions of creativity, how they use creativity in their work with clients and colleagues, and what factors help and hinder their creativity in practice. participants also reported wish list items, describing items that they did not possess or thought they did not have enough of that could benefit their experience of creativity in practice. all interviews were recorded and hand written notes were taken during the interviews. all interviews were completed in person, with ten interviews taking place in the participant’s office, and one occurred in the participant’s home at the participant’s request. four interviews were followed up in person for the purposes of clarification, participant cross-checking, and data validation. the remaining seven follow-up contacts for data validation occurred by email. details of the participant checks are described in the rigour section. . data analysis in order to examine the data, the audio recordings of the interviews were transcribed and the interview transcriptions were read and organized. the cis and wish list (wl) items were extracted from the data in groups of three randomly selected transcripts. the batches will consist of randomly selected interviews (butterfield, et al., ). from the first three interviews, helping and hindering cis and wl items were identified. the emerging patterns, themes and similarities that emerged among the cis and wl items were categorized (butterfield et al., ). the remaining transcripts were examined, and helping cis, hindering cis and wl items were identified and placed into existing categories. new categories were created when cis and wl items emerged that did not fit the existing categories. categories were modified, renamed, merged together and broken apart in order to create a richer understanding of the research data, to reduce overlap, and to distinguish between categories. borgen and amundson’s ( ) (as cited in butterfield et al., ) % participation rate was also taken into consideration when identifying incidents, creating categories and re-assigning incidents. once the lists of categories that represented the cis and wl items were established, descriptive titles with operational definitions were assigned to each category. data interpretation included the following nine credibility checks: descriptive validity, interview fidelity, exhaustiveness, independent extraction of cis, exhaustiveness, placing incidents into categories by an independent judge with expertise in creativity, participant cross-checking, participation rates, expert opinions, and theoretical validity (butterfield et al, ). these credibility checks have been explicated in more detail in the rigour section. . rigour trustworthiness is essential in demonstrating rigour in qualitative research as the audience relies on this quality when making decisions using the information provided (haverkamp, ). it is especially important in a health care field, like co- occurring disorders treatment, where random control trials are the gold standard (wampold, ). consequently, trustworthiness and rigour were established in this study through the implementation of nine credibility checks outlined in the enhanced critical incident technique (butterfield et al., ). descriptive validity. all interviews were taped in order to have an accurate account of the participants’ experiences. professional transcribers transcribed all interview audio recordings, the transcriptions were independently proofed and then i listened to the recordings again and compared them to the proofed transcriptions. then i worked directly from the transcripts to analyze and interpret the data. participant cross checking, described in more detail below, was utilized to provide participants with the opportunity to verify the soundness of the categories and confirm the extent to which they reflected their experiences. interview fidelity. an expert in the cit method reviewed three samples of the interviews to ensure that the cit methodology and interview protocol was followed, and that i did not ask leading questions. exhaustiveness. cis and wl items and categories were documented in order to identify the point at which exhaustiveness occurs in the data. exhaustiveness was achieved at eleven participants. independent extraction of cis. an independent coder with expertise in creativity and research using cit independently extracted cis and wl items from a randomly selected percent sample of the transcripts. the purpose of this credibility check is to “calculate the level of agreement between what the researcher thinks is a critical incident and what the independent coder thinks is a critical incident” (butterfield et al., , p. ). there was percent agreement between what i identified as a critical incident and what the independent coder identified as a critical incident. placing incidents into categories. twenty-five percent of the incidents were randomly chosen and shown to an independent judge with expertise in the critical incident technique and creativity in counselling. then the independent judge placed each incident into the existing categories. the agreement rate between the researcher and the independent judge for the helping incidents was . % after discussion. for the hindering incidents, agreement was % after discussion of one incident, and finally the agreement rate for wish list items was % with no discussion. participant cross-checking participants were contacted a second time after the data from the interview was analyzed to allow them to review the cis and wl items that were extracted from the data and the corresponding descriptive categories created. participants provided input and commented on whether the incidents represent their experiences, as well they clarified some cis and categories. in total, nine participants provided feedback, and all nine agreed that the incidents and categories accurately reflected their experiences. four participants who completed their cross-check in person actually described new incidents and a subsequent verification took place. two participants did not respond to the follow-up verification email, and therefore did not provide feedback. participation rates. participation rates were calculated for the categories using the percent criteria established by borgen and amundson ( , as cited by butterfield et al., ). the rates are reported in tables - in the findings chapter. expert opinions. the categories were submitted to two experts in the counselling field in order to determine whether the categories were useful, surprising, or if there was anything that might be missing. one expert holds two master’s degrees in counselling and had conducted research in creativity using the critical incident technique. the other expert was a registered psychologist with a ph.d. in counselling psychology, had expertise and experience working with clients with co-occurring disorders, and he had utilized cit to conduct research. both experts found the categories meaningful and helpful. the expert with research experience investigating creativity in counselling was not surprised by any of the categories; however, the registered psychologist was surprised that experience with art was not mentioned. the expert’s surprise reflected the commonly held association between creativity and the arts. theoretical validity. theoretical validity was checked by stating the assumptions underlying the study and reviewing the assumptions within the framework of the current research literature to see if the assumptions were supported. second, the categories were compared to the relevant literature in order to reveal if support exists. exploration of the emergent categories in comparison to the relevant literature forms part of the discussion chapter. . ethics haverkamp ( ) emphasizes the essential nature of an ethical relationship between the researcher and the participants due to the vulnerability of the participant; it is the researcher’s responsibility to promote participants’ welfare and protect them from harm. in order to meet my ethical obligations, a number of issues were considered in conducting this study. an informed consent form was created outlining the purpose of the study to ensure participants were aware and understood their role in the study during the interview, analysis and publication process. having been trained as a counsellor, and as a member of both the canadian counselling and psychotherapy association (ccpa) and the american counselling association (aca), i am aware of the role of confidentiality in both the counselling and research process, and i must adhere to those organizations’ codes of conduct. consequently, i was aware of potential harm for the participants should they possibly share confidential and sensitive information regarding their clients and colleagues, particularly since the cit method asks for participants to provide examples. this potential for harm did not emerge as a concern in the interviews as all participants understood and agreed to the nature of confidentiality in the study, and they maintained client confidentiality. additionally, most participants seemed to enjoy the interview process with some speaking for much longer periods than was needed as they wanted to fully share their experiences. some commented that the opportunity to discuss their creativity was helpful to them. another ethical consideration in any study is ensuring the validity of the data and the subsequent interpretations in order to accurately represent the participants’ experiences. to ensure accuracy, i organized the data into the categories with my interpretations and shared the relevant information with each participant. i invited them to add, remove or change the information to increase the accuracy of the findings and interpretations. nine participants reported that my categories and interpretations were accurate. one participant asked to have a helping factor involving supportive management removed. another participant tempered a statement involving a politicized organization that often plays a role in his field. i decided not to use the statement at all in order to prevent any potential harm to the participant. finally, a third participant provided further explanation regarding comments about colleagues that hindered this person’s creativity. quotes related to these incidents were not used in the writing of this thesis in order to prevent harm to the participant. it should also be restated, that of the eleven participants, two did not respond to the second contact to verify the data. 	
   chapter : findings having examined all the data, incidents were described by participants consisting of helping incidents, hindering incidents and wish list items. the incidents were then organized into the following helping, hindering and wish list categories listed and described below. . helping critical incident categories after speaking with all of the participants for an average time of almost hours per participant, helping incidents were reported and separated into twelve categories. all categories are reported, and all categories met the twenty-five percent participation rate established by borgen and amundson. also, it should be noted that in many examples, the incidents described involved two or more categories. table . helping categories helping categories number of incidents % of helping incidents number of participants % of total participants . personal factors . % . % . colleagues and/ or collaboration . % . % . resources . % . % . education and training . % . % . client factors . % . % . autonomy . % . % . supportive management . % . % . client feedback . % . % . experience . % . % . personal or professional practice . % . % . meditation/ mindfulness . % . % . personal therapy . % . % total number of helping incidents: personal factors. incidents regarding personal factors formed the largest helping category, with . % of the participants reporting incidents. participants described in detail how one or more aspect of their personalities, communication styles, attitudes, emotions, philosophies of care, orientation towards risk, not fitting into the norm, being a highly sensitive person, levels of confidence, and their reputations within their organizations positively influenced their creativity. inherent aspects of the participants are important to almost all of them because they promote their creativity. some of these inherent personal qualities included being present, open, flexible, adaptable and curious. one participant stated, “part of the creativity would be to leave options open and kind of let it manifest how it's supposed to manifest.” another participant reported how being open and willing to take a risk allowed her to be creative with a client with schizophrenia experiencing active symptoms, i was always a little bit trepidatious [sic] as to how to approach [hallucinations]. “what do i do with this? … do i just, … take it all as she says it or should i be concerned?” … so …. i made it very comfortable for her to tell me all sorts of her … hallucinations or whether she thought they were hallucinations or not .… oftentimes she didn’t think they were hallucinations but they didn’t pose her any ill effects so i could be kind of creative in the way i think. i mean, i don’t know that it’s very conventional to really delve into that with somebody who’s schizophrenic. traditionally, a counsellor might challenge the client regarding the reality or lack thereof of the client’s experiences. however, this participant found that she enhanced her creativity through her openness and willingness to risk deviation from standard practices. one participant spoke more directly about ethical risk-taking, open to the ambiguity of doing something different and accepting the possibility that something might not work in practice as being helpful for his creativity. he stated, i think i take risks in terms of how i work with people often. anything that isn't … linear and safe is potentially risky… for me risk just means, in terms of a therapeutic relationship, just possibly being wrong, … possibly making a mistake. and that happens. and just accepting that and recognizing that, yes, i might make mistakes, but, … what are the possible benefits? and i would always check that out with [the client] ahead of time… i would never just plunge ahead…my … m.o. in working on that is to say… “this might be very difficult, we might get into territory that's uncomfortable, it's important… for you to recognize where you need to stop and to let me know”. and so that's … boundary setting. the above is an example of how the counsellor’s personal willingness to take risks and be okay with something not working enabled him to practice responsibly. interestingly, the above example was the only explicit incident where someone used the word risk- taking. interestingly, although others alluded to risk-taking or experimentation, no one else identified with those terms. another participant explained at length how not using the traditional practice of being guided by a patient’s chart and being open, flexible and adaptable to what happens in the here and now during counselling sessions enhanced his creativity. the participant stated, it's kind of not looking at the chart that comes in to decide what the need is…. i think being creative is responding to whatever is present rather than predetermining what needs to be done. it seems like creativity occurs in the present moment, right? … i guess i would say that the creativity is to not lock in that this man needs to deal with recovery, but to try to stay with where he is, and where he was dealing with the symptoms and staying with them to see whether they dissipate after a significant time of not using, or if there [is] some underlying problem that needs to be addressed with medication or therapy or something. in the above incident, the participant described how openness, being in the moment, and adopting an attitude of not knowing enabled him to be creative. two participants described curiosity in conjunction with empathy, as the basis for their creativity. one participant reported, “to me it's the empathy and the compassion trying to show through ... so again, the whole thing about what's it like for you, …curiosity … trying to find out a little bit more of what's going on with clients”. curiosity was featured prominently in the findings with seven participants referencing it as a personal feature that enhanced their creativity. another participant, with a sense of humour, talked about how his openness, initiative and his willingness to work collaboratively facilitated his creativity and generated opportunities to be creative. he stated “if you’re going to do this job, it’s good to have loose boundaries and an overdeveloped sense of entitlement. because you … sort of invite yourself to start doing things”. humour, playfulness and a desire to make counselling fun appeared in the data as helpful personal factors. one participant found finding the space between practices and “playing” in those spaces helpful to his creativity; “because it’s concurrent disorders, there’s the best practice for depression, best practice for substance abuse, and they will naturally have their little inconsistencies and incongruities, and that’s the space where i play…because that’s where i get to adapt”. for this participant finding gaps and exploring the opportunities within them, and then being playful and adaptable, enhanced his creativity. another participant displayed openness to the very nature of what counselling was. she found being open and flexible regarding what the tasks involved in counselling enabled her to be more creative. she describe an incident thusly, this week i was speaking with a woman and she … is so overwhelmed with all these things that she has to do in her life... she needs support to do these things as well. and i said, "you know, you can get staff support to do these things, but also, just so you know, i can do these things with you too. we don't always have to meet in my office. if the most pressing and important thing for you today is to go to the bank, cash a cheque and then pay off something, then i will do that with you." … it's just not sort of sitting here and talking about, you know, how are you feeling today? her openness, flexibility and adaptability to emerging client concerns helped her to be flexible with her clients. colleagues and/ or collaboration. colleagues and/or collaboration also had a participation rate of . % with incidents reported. case consultations, working on projects collaboratively to create new services, being challenged in a supportive manner by individuals working in a medical model, having new people with fresh ideas and who remind participants of their own creativity enter the work environment, and brainstorming were some of the examples of how colleagues and working collaboratively helped participants be creative. an example of work group collaboration was reported by one participant working in an environment that had previously only offered individual counselling and does not, based on the participant’s comments, see the population served as having trauma issues: when i came in here i said … i want the majority of patients to be in groups and i want to develop groups, and i took that on and now we have a continuum of groups… me and [name] did the m.i. group and i put together all the materials, and she gave me her expertise and then we just started [to] pilot it ... and then me and [name] did the active group, piloted that, got that going and then [name] did all the relapse prevention, and i did the seeking safety to get like a trauma lens in and my next stop is … i’m going to push for a mindfulness group. so i want a whole array of treatment programs, that was my vision coming in was to have an array of groups. i: that didn’t exist before. p: none of them existed before. i: so, you talked about [name] and, and [name], did they help you be creative? p: they gave me material … they gave me their knowledge … [name] is the m.i. expert, so she gave me all the m.i. stuff and i made it into … a group. [name] did a lot of research on active treatment with me, and then i put it together. 	
   the above example illustrated how the participant came together with colleagues to collaborate, sharing resources, knowledge and ideas, which enhanced her creative abilities to generate new interventions in her work setting. another participant provided an example of how creative colleagues in the health care system inspired new ideas and their subsequent collaboration resulted in new services: it’s helpful to know a little bit about the person you’re working with, as a colleague maybe you know across town in the other clinic or somewhere else, because that enhances the creativity again… i was asked recently to start a concurrent education group for [site]… i knew from a couple of contacts i’ve had with their occupational therapist out there that if i did it with her, to use the established methods of creativity she’s used to engage those clients, folded into my knowledge base we could come up with something together that might have a chance of working, and so far it seems to be working. because i knew a little about my colleague, you know, whose creative mind can i borrow when mine runs out of ideas. the participant went on to elaborate more on his belief regarding collaboration that guides him and forms the foundation of his creativity in practice: it’s important to be a bit creative about how you deliver something… to ensure that you engage the client…. really, when i think about the stuff i’ve done that would be described creatively at least by my definition, … flexible and adaptable …, i think i try to do more creative stuff about how i try to encourage the two halves of our mental health and substance use system to work … because it’s that big picture thing that’s got to work before we can work with the clients. the participants emphasized how important collaborating with colleagues was to enhancing their creativity. in some cases colleagues who they identified as creative, colleagues who possessed knowledge they did not, and even colleagues who did not necessarily subscribe to the same model of client change but sparked their imaginations helped their creativity. resources. resources was the third most significant category with a participation rate of . % and incidents reported. resources ranged from material supplies likes pens, markers, furniture, books, sports equipment, videos, old papers from graduate school, other individuals’ conference posters, and tapes. participants also cited technological resources such as ipods and having the ability to access social media such as youtube or research via the internet, and televisions shows such as in treatment. human resources such as health care professionals working in different fields such a occupational therapists and alternative therapists were also mentioned as helping factors. finally, financial resources in the form of access to funding and larger budgets were also mentioned. one participant detailed how books helped her be creative in generating new interventions. i went to [a bookstore] and i was looking at all the books. and there was, there was some, pretty, pretty good choices there. but yeah, i went with … alan berger’s smart things to do when the booze and drugs are gone and he wrote that book for people that he considers early recovery to be the first to years... and people love it. and the book was not written to be done in a group. it’s not a workbook, it’s not a group book. but, i just set it up so that it is a group. this participant essentially took what existed, which provided her with a launching pad for her creativity, and she combined it with her knowledge and experience to generate a new program in her setting. the above incident illustrates how participants used resources as a basis for their creativity to create something new and effective in their setting. another participant described how having material resources, including art supplies and a musical instrument at hand, enhanced her creativity and enabled her to generate a safety plan for a client who had relapsed and become suicidal. she described the incident, i said, … "what are you interested in? what would you like to do? i've got colouring things… do … you play music at all?" she said, "oh, the keyboard, yeah, i've been wanting to play that." … so off she went and she played the keyboard for almost an hour. access to material resources enabled participants to generate creative solutions they could offer to their clients. interestingly, two participants also identified the lack of resources and funding within the health care system as helping their creativity as it was the restriction that forced them to be creative to find effective solutions with minimal resources. one participant reported, i never … try to imagine offering any kind of a service that really requires much in the way of things that cost a lot of money, because you know healthcare budgets these days are all spread pretty thin, so, … you work with the materials at hand, and in a way, that’s kind of an advantage again because the less you have to work with the more creative you had to be. it seems that the restriction of resources served to help this participant to be more creative because creativity was required to generate solutions with limited or no funding to purchase new or different materials. in this light, resources and sometimes the lack of resources stimulated some participants’ creativity. education and training. education and training emerged as a category as . % of participants mentioned incidents that illustrated how education helped their creativity. participants reported a range of helpful incidents that promoted their creativity including: aspects of their graduate level training in counselling, specific training in motivational interviewing, existential analysis, holistic health therapies, going to workshops that inspired participants to incorporate specific practices into their work, as well as self-education which included reading specific texts. one participant reported attending a workshop that inspired his creativity. the participant stated, “i was at this workshop and whoever the presenter did a meditation and a light bulb went on and i thought, why don't i do that with my group?” this counsellor found the experience of attending training workshops exposed him to new and different ways of doing groups, which in turned helped him to be creative and implement new ideas into his group design and practice generally. client factors. client factors had a . % participation rate with participants reporting incidents where clients were helpful to their creativity. helpful client factors included their desire for direct feedback, their distrust of professionals, client resistance to interventions and anger expressed in sessions, the level of experience of clients in terms of therapy, the client’s readiness to change, specific behaviours around their use of technology, seeing clients succeed, client resilience and courage, and the limitations of the clients in terms of their mental health or cognitive abilities. one participant found that capitalizing on clients’ behaviours stimulated her creativity. she described an incident where she reached out to a client using a traditional method, so i phone her and she doesn't answer. i phone again. i phone again. doesn't answer. and then all of a sudden, … i remember us walking down the street and her texting. and this was my very first text message. and she answered … it took me minutes to send a text. i have to do this…. the participant felt an urgent need to follow up with the client because this client had been suicidal and then discharged. because the participant remembered the client’s use of texting, she was inspired to try it herself. without seeing the client text, she might not have learned to use the technology, so it was the client who stimulated the opportunity for the participant to be creative. another participant discussed how client readiness to change positively impacted on his creativity. he described the incident thusly, i had a client who was referred to me, schizophrenic, big time pot smoker. and just as he was coming to see me he had made that decision to stop smoking pot, because he was realizing it wasn't very healthy…. and then what he did for himself was, he came to realize, he allowed himself five cigars, he went from smoking pot to cigars and went to -- instead of smoking a pack of cigarettes, went to five cigars a week. and so that was his own, he created his own work, sort of use of harm reduction as well. the participant found that because the client was ready to make a change and actively engaged in the therapeutic process, the counsellor’s creativity was enhanced. he could see the results of his creative endeavours in how the participant responded to the therapeutic process and he could adapt to the client’s own creative solutions creating a virtuous circle of creativity that enhanced the counsellor’s own creativity. clients’ readiness for change played another role in enhancing a different participant’s creativity. she reported how seeing clients ready to participate in other activities and succeed outside of therapy enhanced her creativity. she described how a participant won a scholarship and enrolled in a college, how several clients were successfully engaged in pre-employment programs, and how some clients participated on the world homeless soccer team. she said clients’ successes inspired her: “it just makes me think of more things that … we could get … them involved with”. witnessing clients make progress enhanced her creativity because she felt encouraged and inspired to generate new opportunities for clients. the flip side, client resistance to participating in activities, was also represented in the data. a participant described how he often liked to use journaling as a technique with his clients. however he stated, “i've had recently a client who doesn't like writing. she shuddered when i… suggested doing it, you know. so i said, … "try a tape recording of what's going on with you." although the participant normally had clients write on paper, he rolled with the client’s resistance and used it to enhance his own creativity, generating a new approach for him, the use of audiorecording as a form of journaling, to meet the needs of the client, maintain the therapeutic alliance, and creatively further the client’s therapeutic process. autonomy. like client factors, autonomy had a . % participation rate with participants reporting incidents where having autonomy and having freedom within their practice as counsellors helped their use of creativity. autonomy was separated from supportive management, which is needed for the participants to have autonomy, because it was how clients used their autonomy, not just that management gave it to them, that helped their creativity. examples of autonomy included being free to develop programs including groups, to work in any modality participants thought was clinically appropriate, setting ones own schedule including the duration, frequency and timing of appointments, conducting sessions outside the facility if appropriate, and being able to go for walks and stretch when needed. one participant described how she had the freedom to set her own schedule in terms of client sessions. she was able to schedule longer appointments, which allowed her to be more creative because she had more time to implement different approaches rather than feeling limited to dialogue based interventions: [in our setting] we have a lot of autonomy as far as what counselling approach we use, how we work with a client, how we structure our sessions. i prefer to have at least an hour and a half with clients. most therapists … it's fifty minutes with the client, ten minutes for notes. mine is an hour and a half to two hours with the client and then my notes. so i like to do a lot more in-depth, … get the relationship going, get them talking, do some therapy, and then wrap up. i find it takes more than an hour to do that. so then i can also implement more … things in the session, not just the talky stuff …. if i was expected to see clients back to back every hour, i would not be very effective. this participant was very explicit on how autonomy and the freedom to establish her own schedule enabled her to be creative. because she could work with clients in session lengths that exceed the industry norm, she was able to implement more than just talk therapy interventions. as a result, she felt that autonomy was crucial in helping her creativity. another participant described the autonomy her employer gave her. she was able to create her job duties in the manner she saw fit because management gave her the autonomy to do so. that freedom helped her to draw upon her creativity to develop creative interventions that worked with her specific population. p: there was no position when i started here. i: so you got to basically create your own position? p: exactly. the rules were there, “…this is what we want you to do." and away you go. with the new position you don't know … what's what….i just started to develop stuff that seemed to be working. the autonomy she described would not have been possible without supportive management, which emerged as the next significant category. supportive management. supportive management also had a participation rate of . % percent with seven participants reporting incidents. supportive management includes support in implementation. for example, employees may have the autonomy to develop a creative intervention or participant in creative policy development, but management support would be required to actually implement it. supportive management included trusting participants and allowing participants to use the models and interventions they deemed clinically appropriate; allowing participants to engage in their job duties as the participants saw fit; permitting collaboration with other organizations; implementing policies that recognized clients’ needs, specifically around relapses, allowing smoking, and allowing pets, therefore freeing up participants’ energies to focus on other client concerns; not dictating schedules; engaging in dialogue with the participants; and protecting participants from interference from other managers and stakeholders. the protective factor as enhancing creativity emerged as a prominent feature of this particular category. one participant reported, we have an addictions manager that sort of watches over us and we have child and youth mental health folks that are sort of all in the mix, right? but ultimately we report to our supervisor and she has always stood by us, always. the above participant described an incident where she broke from regular protocol but her supervisor protected her. it was the confidence she felt as a result of the consistent and ongoing support that enabled her to be creative in her practice. another participant described support at a more global level. he discussed how imposed models were sometime problematic, but in opposition to public and other stakeholders negative reactions that could have hindered his creativity and effectiveness, he said, i’m protected by the health authority having enough gumption to say… this is what works, we’re in the business of healthcare, we want to be the best at it and this is the paradigm that does the best job. so, [health authority] … they’ve got my back basically is how i see it … because we know this stuff works. with healthcare being publicly funded, there is a political aspect to care. the stigma around mental health and substance use can cause stakeholders to attempt to interfere in the delivery of services. both of these participants illustrated how supportive management was key in creating space that enabled them to use their creativity in practice. client feedback. client feedback as a helping factor was reported by seven participants, representing a participation rate of . %, who reported eight incidents. client feedback was described both as verbal feedback such as “it helped me when you did …..” or being told something was not very good, non-verbal feedback comprised of facial expressions and body language, and also observing clients responses to the therapeutic process. explicit client feedback was described as being helpful and very straightforward: “feedback from a client that would help me be creative … ‘it helped me when this happened.’ … oh, great, okay, well, what … else can we do with this to make more of this happen?” one participant described client feedback in terms of responsiveness to therapeutic process: what helps me in being creative is feedback and information from the people that i'm working with. attending to adjustments … that my clients make … in whatever it is that they're working on based on what we do … i pay attention to things that work, and i think …how can i take this concept and move with it … in a positive direction … it's not the same for each person. the participant observed client progress and used it to guide his creativity in generating interventions that would further the therapeutic work between the client and himself. experience. experience was reported as being helpful by . % of the participants describing thirteen incidents. experience included events that happened, though not necessarily regularly, that now helped to enhance the participants’ experiences of creativity. past experiences ranged from learning to play the guitar to the participants’ own recreational use of alcohol. one participant shared that going through his own recovery process helped him be creative in that he used the experience to engage clients, establish rapport and communicate concepts. he also used his recovery experience to establish credibility with the client, which helped them. one participant shared how her history of social drinking enabled her to be more creative: i’ve dealt with a lot of people that have been intoxicated and so i have no problems with that. i’ve been intoxicated so, you know like i know what i know sort of a little bit what they’re feeling. and so i can be a little bit more creative in that sense. it’s not so, so stark and, and medical and weird. this participant felt that her previous recreational use of substances helped her understand the clients’ experience and enabled her to be more creative because she would empathize. two other participants shared how their own use of substances and subsequent recovery processes aided their creativity because they could, again, empathize with the clients’ experiences. interestingly, the experiences reported were almost always personal that the participants drew upon to enhance their creativity. only two participants indicated that their previous professional experience helped them with their creativity. on participant cited how working with a specific employer who specialized in the most difficult of client cases aided her creativity because it prepared her to be able to address the clients complex concerns. another participant described how she had worked in a range of addictions-focused environments such as detox and a residential setting which enhanced her creativity. personal or professional practice. personal or professional practice(s) were reported by six participants representing a participation rate of . %. participants cited nine incidents where their practices aided their creativity. practice was defined as something that was done on a regular basis over a sustained period of time. in some cases, the practice may have started out originally as a personal activity, but participants had incorporated it into their professional activities. practices fell into subgroups such as environmental practices, intervention practices, internal practices and professional practices. one participant described his practice of creating therapeutic environments to enhance client engagement and encourage progress. this person described how he increased his creativity by designing a therapeutic office space. by using his creativity, he was better able to engage his clients, which further enhanced his creativity in practice. for example, he reported, i've had these big burly harley davidson tattooed dudes … come into my office and i'd have my soft music playing and the water element and they'd say, "it's really nice in here," and they'd get calmer, it just slows them down. … i think it helps them just relax and open up a bit more. this incident involving environmental practice is important to consider as helping counsellor creativity, as the nature of the physical environment emerged as a hindering factor. other participants cited specific types of “go-to” interventions that they used to enhance their creativity, to creatively engage clients and encourage therapeutic progress. one participant described how the use of drawing helped her to creatively engage youth and explain therapeutic concepts in a manner that would be received by her younger clients. she stated, “i'll draw diagrams… most of the kids don't … do well with handouts…so we have to do it in a different way, so i'll draw a picture”. this person also regularly uses music to enhance her creativity. she finds that the music and exploring lyrics enhances her ability to creatively engage with clients and increase both the effectiveness and efficiency of the therapeutic process. she described an incident thusly, this is a kid that … when i met him he …had been tossed out of his home, … i think he pulled a knife and said he was going to kill himself or his mom, i'm not sure ... so he's living in a safe house and so he was really… in trouble, like really a lost soul... so i asked him when i went in to see him the first time, … “i see you're listening to your ipod there, … what kind of music you got on that ipod?” and he tells me … and i said “do you have a favourite song that you like?” and he says, "yeah, actually, i do." and i said, “well, maybe what i'll do is i'll get it on youtube or on itunes and i'll come in and maybe we'll listen to it together next time”. and he says, “yeah, sure, that would be great”.… [participant shows investigator lyrics] then we do this ….i bring the lyrics and i say, "okay, just underline, … anything to stands out to you in the song." so this is his copy and this is mine. i did not underline. now, sometimes i do, but that day i did not... so he talks very openly about his anger. his older brother, why his older brother left him, his parents are lying to him and he feels very let down by them. and he's falling into the footsteps of his brother. and, i mean, some of the words here, "the one thing that made me feel alive, anger, from paranoid to paralyzed. i go from feeling extremely pissed to not feeling a thing." … that's session two. so it's a fabulous way of hooking in with kids, in a very non-judgmental sort of, it's like super duper powerful… this is where you get to … how do you get, in session two? you don't get there. this was important to him. here is the other one. we had a good laugh about that… i said, "scorch?...oh, god. what are you going to do, are you lighting things on fire? is that what that means"? he says, “no”. and i said, "oh, god i hope not. i said we got whole [other] issues if you're going to be a pyromaniac." … and we had a good laugh about it. …. he told me that afterwards, … "oh, no, i feel burnt, i feel like i'm getting burnt," on all levels. wow. so it helps --that's music. i: so the creativity helps you get to the deeper issues faster? p: yeah, i think so. i: so you can work faster in a fewer amounts of sessions because -- p: yeah, by just being open to going in a different way, using music … i: so in some ways it's more efficient? p: it could be, yes. yes, absolutely. you know, although you have to be careful with the music right? because it's not -- it's not about easy listening and having a fun session listening to music, it's about the therapeutic aspects of what does it say. so i wouldn't … play it every session. but, yes, as a way to getting to that next level of where can we talk… because some kids… find it very difficult, how do you talk therapy with kids who maybe, … don't want to talk? … how do you reach them? they're like, "i'm not frigging talking to you". she was able to engage a client with complex needs and achieve a significant level of depth in her estimation, and for that matter in mine, in only two sessions by being open to possibilities, using resources like technology which will be discussed further, being direct in asking the client straight out about fire starting and using her sense of humour all resulted in her using her creativity in the first two sessions with this client. she also identifies how the use of music and art is not always appropriate in session, illustrating that counsellors need to and do use their clinical judgment about the use of creativity in sessions to make therapeutic decisions about how and when to use it responsibly and ethically. another participant regularly used analogies to explain concepts in a meaningful way to clients. in some cases he would draw the analogy such as figure . where he would talk to clients about how substance use was the “drug monster” that would take over their lives. he found that the use of analogy and the drawing of these analogies enhanced his creativity. figure . photograph of a drawing of the “the drug monster” analogy. this figure demonstrates how a participant utilized analogy and drawing as practices to aid his creativity to engage clients and effectively explain concepts. this participant would also use games regularly to further enhance his creativity; he used the games as analogies. he demonstrated his use of games during the interview by playing catch with a stuffed monkey, a deliberately chosen metaphor used symbolically to represent the “monkey on one’s back”. he illustrated how habitual behaviours become ingrained even after someone stops, and using simple games helped him to creatively convey his messages. another participant reported on how he used journaling personally to increase his creativity and then he incorporated the practice into his toolbox of interventions that he uses with clients. to explain how journaling enhanced creativity, this participant stated, “i think for some [clients], the fact that they're [journalling] … brings them to a different awareness and then they can talk about it and then we go from there”. the participant expressed that the same process of bringing himself into awareness helped with his own creativity. one participant described an incident reflecting how his regular internal practice of self-reflection enhanced his creativity in terms of relating to clients and engaging them. another participant described how she found brainstorming with colleagues and with clients as helpful to her creativity as it helped her enhance the divergent thinking component of the creative process. finally, another participant discussed the professional practice of writing case notes to aid in conceptualization. her case notes helped her gain clarity around the client and the progress in the counselling relationship, which enabled her to generate creative possibilities for future sessions. meditation/mindfulness. meditation and mindfulness as a helping factor for promoting creativity was deliberately separated from personal and professional practice because on its own, it met the participation rate criteria with . %, representing four participants, who cited fifteen specific incidents where meditative and mindfulness practices enhanced their creativity. in addition, the use of mindfulness and meditation appears both in the addictions and the co-occurring disorders literature so its presence as a category is a fit. this fit will be discussed later in the fit with the literature section. one participant described how meditation enhanced creativity because it helped minimize the impact of rumination and help with focusing and completing the tasks at hand, i do meditate every day, most every day, and i find that when i stop to sit i become acutely aware of how busy my head [is], often in conversations with people who are not here, and it's almost always based on an underlying feeling that i have not gotten something done. so it kind of stops just the treadmill response to distress so that i can actually deal with what the issue is. so the creativity will be it short-circuits the perseverating so that i can do what actually needs to be done. another participant cited his yoga practice as being helpful in promoting creative solutions to clients’ concerns around chronic pain: “it's … knowing how beneficial yoga and deep breathing and relaxation can be, to do it more… that is creative. i try to do that with my clients, recognizing … their breathing and suggesting yoga”. another participant revealed how her use of meditation enhanced her creativity, while yet another participant described how her interest in buddhist psychology and her application of mindfulness practices in session, being open and being present, enhanced her creativity because it meant she could be open and flexible in response to the clients. the openness, adaptability, being present and focused was common amongst the four participants who reported the incidents that formed this category. personal therapy. personal therapy was cited as being helpful to participants’ use of creativity by three participants, representing a . % participation rate. participants found their own therapy helpful because they either experienced personal shifts in issues of concern and/or they experienced interventions used by their therapist that they then incorporated into their own practice such as the use of miller, duncan, brown, sorrell, and chalk’s ( ) outcome rating scale. for example, one participant reported seeing a therapist helped enhance creativity because the therapist encouraged the participant to be more playful in his relationship with his spouse. the participant stated, “last year i was seeing a therapist and it was helpful… he was saying … what if you were to be more … playful in your expression and did this….i [thought]… that’s interesting …he’s…finding a solution that’s light”. the participant felt empowered to incorporate playfulness and lightness, despite the “heavy” concerns of his clients, which gave him more options and enhanced his ability to generate and implement more creative interventions after having a therapeutic experience with his own therapist. i separated out personal therapy from both experience and personal or professional practice because on its own, the category met the participation requirement. no participant described being in ongoing therapy so it did not match the operational definition of a sustained practice as the personal or professional practice category did. in addition, because countertransference can have a negative impact on the therapeutic relationship, on clients and on counsellors themselves, it seemed prudent to draw attention to the fact that three of the participants identified personal therapy as being beneficial for enhancing their creativity. in turn, they saw therapy as enhancing their effectiveness as counsellors. finally, both experts, when reviewing the categories for meaning and utility encouraged me to include it as they saw it as being a helpful and meaningful category. . hindering critical incident categories during the interviews of the eleven participants, hindering incidents were reported which were separated into ten categories. all categories are reported and all ten hindering categories met the twenty-five percent participation rate. also, in many examples, the incidents described involved two or more categories. table . hindering categories hindering categories number of incidents % of hindering incidents number of participants % of total participants . client factors . % . % . personal factors . % . % . bureaucracy . % . % . imposed models . % . % . unsupportive management . % . % . time pressure . % . % . lack of resources . % . % . colleagues . % . % . physical environment . % . % lack of special topics education and training . % . % total number of hindering incidents: client factors. client factors emerged as the largest hindering category with . % of the participants reporting incidents that exemplified how some client characteristic or behaviour(s) hindered their creativity. the incidents reported included clients’ attitudes towards counselling generally, their attitudes towards certain kinds of therapies, their lack of willingness to consider alternate possibilities or to even change, their unwillingness to meaningfully engage with the counsellor, their lack of resources to act on recommendations from their counsellor, time they spent complaining about mundane matters separate from their presenting issues, challenging the counsellor in an unhelpful manner, clients who return home to families who use substances, or the severity of their mental health issues themselves and the clients’ own biases towards diagnoses. one participant illustrated how clients’ predetermined attitudes hindered her creativity, “’they come in sometimes with a predetermined idea. ‘i just want medication. counselling sucks. what's the point of talking to you? just get me a doctor.’ okay. you know, or they just aren't open to trying different things.” the participant felt her creativity was limited because the client would not give her a chance to engage them in the counselling process. a different participant explained the origin of some clients’ fixed behaviours. he stated, [clients] spend loads of time looking up their diagnosis and stuff and all of these other things and then question why i'm going this way and going that way…. they get too enmeshed with it almost, and they're not willing to look at anything else. so in that regard it can get in the way. clients’ use of the internet, which is not always a reliable source of information, at times generated resistance within the clients. he felt slowed down by the questions and found, at times, it was difficult to help clients to move past what they read. consequently, the combination of the clients’ use of information and the questioning, resistant behaviour hindered the counsellor’s creativity. another participant cited how the impact of the severe nature of the clients’ mental health impacted interaction within sessions and subsequently on her creativity: it's very difficult to know sometimes what [the clients] relate to. they're so blunted and often very non-verbal that you have to look for very subtle cues that they've responded or they have a preference for one thing over another. that blocks creativity. and their passivity, they're not going to fight to the team to have this type of treatment; whereas someone in the community would say, you know, "i want to [this] type of therapy, this is what i like”. the very nature and severity of the client’s illness, combined with the effects of the client’s medication and the client’s low motivation to make a personal investment in their progress hinders this participant’s creativity. another participant echoed how the severity of clients’ illnesses, which affected their ability to understand more abstract communications such as metaphors, combined with the client’s limited motivation impeded her creativity. she stated, super ill people i find it really hard… i can do some really simple things with them for sure, like make a little collage, … but if i want to do like something … more abstract or more profound or get them to do … even a strength box … the motivation level here is so low. these examples were not the only examples of how the clients’ mental health concerns impeded the counsellor’s creativity. another participant mentioned that sometimes he felt his creativity was limited by the severity of the client’s symptoms and he thought it best not to be too creative and avoid the potential for interfering with other medical professionals’ treatment plans for the client. one participant shared how a client’s unwillingness to engage and consider alternate possibilities stymied creativity as well as frustrated him, which also hindered his creativity: this particular woman was very set in the way things were…she had a particular way of viewing the world and wasn't open to exploring other possibilities. and the nature of why i was seeing her and what she was doing there contributed to a feeling of frustration with the person. and that severely limited my ability to be creative. the above example also illustrated how the client’s fixed attitudes negatively affected the counsellor’s creativity. it also illustrated how client factors could interact with personal factors to also impede counsellor creativity. personal factors formed the next largest category to emerge from the data. personal factors. after client factors, personal factors of the counsellor had the next largest hindering effect on their creativity. this category had a . % participation rate with participants reporting incidents. personal factors included their emotional, cognitive and behavioural responses to people and situations in the past and the present. one participant described how his personal factor and client factors interacted to hinder his creativity. his feelings of frustration and risk averseness would lead him to be less creative, utilizing basic techniques rather than attempting to be more creative or creative in a different way to engage the client. nothing will drive me crazier as a clinician than not being able to figure out how to engage the client ... because if i can’t gauge a reaction from somebody, i … don’t want to descend into something that might feel like i’m experimenting … so … i revert to the basics … i find that a limiting factor…. i get less creative. i think i fall back on just basic cognitive behavioural therapy, which is what i was initially trained in, … like you run home to mama at that point. the participant’s frustration about his inability to fully engage the client combined with his apprehension about proceeding without a clear direction, inhibited his creativity as he felt he needed to revert to a conventional approach rather than “experiment” and be creative in trying a different approach. another participant discussed how relational stress with significant others negatively impacted his creativity because it caused him to attempt to meet his needs rather than focusing on the client in a creative way: there’s that kind of core stress that i feel. that i don’t think i’ve worked through enough … that’s about belonging and being okay how i am, and having that unsettled will impact how i am with my clients. which will stifle creativity because then i’m trying to feed me rather than take care of them. a participant reported a related incident of how countertransference may have inhibited his creativity when clients do not seem to exhibit any kind of progress. he saw his feelings of inadequacy as possibly being projected into the therapeutic alliance, and as such it impeded his ability to be present and therefore creative with the client: i feel that i don’t know what i’m doing…i feel inadequate and that just kind of feeds into [the client] not moving. so it kind of creates a loop. so maybe my judgments of her are judgments of me not being able to understand or help her move forward right? so, so what’s wrong with me that i can’t do this? insecurity, anxiety and far was also cited by another participant but for different reasons. the participant felt concerned that she lacked life experiences that would “qualify” her to work with clients with such complex needs. her worry that clients would not respect her, prompted her to ruminate. she gave an example of her thinking pattern that impedes her creativity: clients who are % of the time older than me who most of the times have lived on the street and … pretty different life experience.... i can still be quite intimidated by you know…i feel like they maybe don’t take me seriously… “she’s never had addiction problems. she’s never had to sell her body for drugs. like who the hell does she think she is?” …. these are the kinds of things i have playing in my mind. because the participant ruminates on her insecurities, she also finds that she is not able to be as present in her counselling sessions and as such is less able to be creative because her worries limit possibilities and opportunities for creativity. bureaucracy. bureaucratic aspects of the organizations in which participants were employed were viewed as impediments to their creativity. bureaucracy had a participation rate of . % with incidents reported. for some participants, bureaucracy was represented by statistics, reporting requirements and the reporting systems themselves, and limited and restrictive job descriptions. for others, bureaucracy had to do with extensive approval processes for therapeutic interventions they might want to implement with their clients. one participant talked about paperwork that inhibited creativity because it required that she check boxes and nothing more, as well as voluminous paperwork for external ministries. another participant talked about how the bureaucratic separation between mental health and addictions services hindered her creativity. all of these incidents were reported as hindering events because they took time from other opportunities to be creative, or were often routine tasks that did not allow for variation or creativity, or the processes involved to implement were too time consuming and frustrating that the participants chose not to bother being creative as it was perceived as not being worth the time and energy. one participant spoke about trying to generate creative solutions for patients who smoked but had to adapt to a new no-smoking policy in the facility; the hoops she would have to jump through in order to implement a solution stopped her from attempting to implement the creative idea she co-generated with a colleague: i was problem solving with [name] … about how we get patients to come to these smoking groups, these withdrawal management groups, for example. and i would say, "we gotta think, we gotta be creative …" because we had just gone smoke free. and we talked about actually bringing those nicorette things … [but] something like that, you would have to go through so many hoops here to put it in place that you just wouldn't. another participant explained how the bureaucracy of working in partnership with two funders and the requirement of two reporting systems negatively impacted on her creativity because it was frustrating, and felt like an unnecessary duplication of work that took up time she could have used to be more creative on other tasks. she described the bureaucratic reporting system she had to work with: the [employer] staff are not allowed to look at paris. and so we keep paper charts so that everyone, all the whole staff team can look…it's kind of silly because i have to [use] paris anyways … but then only me, the social worker and the nurse can look at them. like the two [employer] managers and all the [employer] staff … can't even access, aren't even allowed to look at paris. the silly nature of duplicating work because of access rules and restrictions limited her creativity. imposed models. imposed models also had a participation rate of . % with seven participants reporting nine hindering incidents. interestingly % of the participants who worked in forensic psychiatric settings reported at least one incident that fell within the imposed model category. models ranged to prescribed theoretical orientations and approaches such as cognitive behaviour therapy or motivational interviewing, using stages of change to describe clients, having prescribed therapeutic goals or outcomes, and abstinence based models promoted by other stakeholders who held to different ideological tenets in contrast to the harm reduction frame work held by many of the participants and considered to be best practices in the literature. one participant described how her work environment required her to work with clients with evidence-based models all of the time. she felt her creativity was hindered because of the technical requirements of the approaches as well as the inability to put her own stamp on the counselling process: here, it’s like you’ve have to do evidence-based all the time, and you’ve got to be doing m.i., and you got to be rating your m.i., and you got to be counting how many times you’ve done your reflections versus your questions and it becomes like this whole technical game … you got to do all your adherence scales, and it’s so structured that you don’t have room to add your own touch in it, because then you lose points on your adherence scale. the client felt that reducing the therapeutic process to a numbers game, where her concentration was focused on the technique, rather than the client, impeded her ability to be herself in her sessions and therefore limited her creativity. one participant summed up the underlying beliefs of colleagues and management that form the basis of the imposed model category: i think there's such a divide in ideology here. you know, the trust doesn't -- … doesn't stem from creativity, it stems from ideology around how patients change. so that's why the mistrust … and so ultimately to have creativity you'd have to find a way to bridge the gaps in ideologies. the participant worked in a forensic setting utilizing a medical model of treatment in which all interventions and programs are required to be evidence based. the participant elaborated to say that by remaining within evidence based processes, she was able to build a reputation for professionalism that her colleagues trusted, which helped her creativity. however, she also stated remaining within certain approved, evidence-based models limited her ability to be creative because she had fewer options available to use in her work with clients. another participant described how ideology and the abstinence model negatively impacted on his creativity from outside his workplace. he talked about how the general public, families and other advocates of abstinence models impeded his ability to be creative: when you take an individual out of a family and you work with that individual, the world they exist in isn’t being oriented to the same kind of transformative change process and that can be very much resistant. so it’s harder for the client to change when you know, health care is trying to engage them in what science says is, … the harm reduction the work, the working paradigm, and they go home to this very, legalistic abstinence-based mentality because that’s what the loved ones want. in this instance, the participant reported that stakeholders working from an abstinence based framework impeded his creativity. his creativity was hindered in that he had to be aware of the environments to which the client would return were less likely to support creative solutions within a harm reduction framework and therefore his creativity was restricted as he had fewer options to collaborate with the client to generate achievable solutions to client challenges. unsupportive management. six participants, representing a participation rate of . %, reported seven incidents of unsupportive management having a negative impact on their creativity. unsupportive management items included not maintaining a suitable physical environment like the temperature of the facility, having to justify expenses along with budget limitations, being micromanaged and told what to do, conflict with a supervisor, and a lack of clinical supervision. one participant answered very quickly when asked what hindered her creativity. she quickly and firmly stated that “being micro managed or if my sessions were being taped and … they were reviewed by a micromanager” inhibited her creativity. the micromanagement and possible interference would inhibit or eliminate her freedom to do her work, which in turn, hindered her creativity. another participant described working for a manager who did not trust him and would not allow any space for the participant to take the initiative or be creative. he stated, managers look at their workers [in] two ways … one way is your workers are not to be trusted, they have to be told what to do, they can't take initiative, et cetera, and that was the impression that i felt under her management … i've left three jobs specifically because management and environment were uncaring of my comfort, my basic needs, like a normal room that has comfortable temperature, … daylight, and also managing a caseload respectfully. this participant felt that the uncaring nature of management as evidenced by their lack of concern for basic, environmental comforts as well as caseload concerns, so impeded his ability to function in his role and limited his creativity that he quit three jobs. his example illustrated that negative impact that unsupportive management can have on counsellor creativity as well as on their willingness to do that particular job all together. time pressure. time pressures were reported by . % of the participants describing incidents. time pressures had to do with meeting the normal requests of others, working to deadlines on special projects such as reports to the federal government or inspections, not having time to prepare for sessions with clients, being booked two to three weeks in advance, and the need to work of the side of one’s desk given there were too many additional tasks during the day beyond seeing clients. one participant described time pressures generally and how they limited his opportunities to be creative: time is always a limiting factor. the one thing about this role too is so many people want a piece of you. i could be two people and fill my time tomorrow. not having enough time to do everything i would like, that’s a limiting factor. this quote illustrates the feeling of many of the participants; there just were not enough hours in the day to be able to find space to be creative and therefore they felt limited in this regard. lack of resources. hindering incidents involving the lack of resources were reported by . % of the participants describing eight incidents. lack of resources referred to either a lack of funding or a lack of basic materials to create projects, reference resources such as dvds and books, technological resources such as laptops that would have allowed for mobility in the community, and specific equipment that participants would have liked to have used in session, and finally human resources in the form of other health care professionals such as occupational and recreational therapists. one participant has creative ideas about working with mental health concerns but is unable to do so because she lacks the equipment or funding to purchase the equipment. for example, she stated “i would like to be able to do some different things like there's [a] meter [i’d] like to buy … this really neat mind meter, for helping with anxiety…i think i could train the kids with that”. a participant saw the benefit of creatively incorporating drumming into her group design but could not because she lacked funding to purchase the materials. she stated, drumming is extremely therapeutic. and there's all of the spiritual stuff that would come out from the building of the drum. but they're about a hundred bucks. and … unless i go out and fund raise … i don't have the time to do that. colleagues. ten out of eleven participants identified collaboration and colleagues as being helpful for their creativity in practice. given such a high participation rate and the impact of the influence of colleagues on helping creativity, the inverse, colleagues as a hindering factor was not unsurprising. one participant specifically identified how systemic separation between mental health counselling and addiction/alcohol and drug counselling and the corresponding collegial attitudes and activities supporting the separation negatively impacted on her creativity as it deprived her opportunities to connect with her colleagues. everybody wants to dump their clients on us, but nobody wants to include us as part of their team. so we're not considered one of them. … we never get invited to the team retreats, which is, planning, and … team building and stuff like that. never, ever included. but yet, you know, when clients come up, we're the first ones they want to just dump clients to. the isolation and subsequent deprivation of opportunities to connect with colleagues negatively impacted the participant’s creativity. another participant described how working collaboratively with interdisciplinary treatment teams working with different models of change, different priorities, and who may have a limited understanding of counselling or counselling approaches hindered her creativity: you don’t want to be too creative to the point where [the patients] get off on some … tangent and you gotta deal with [the clients’] treatment teams … when you’re bringing in these ideas and they’re like ‘what are you doing?’ … makes you not even want to bother sometimes if you have to go through a treatment team just to do some fun intervention that you think will be beneficial because you have to spend the whole time explaining the therapeutic [objective] and it’s just like, ugh. and usually they don’t get it. these two examples illustrate both ends of the spectrum of collegial influence. on one end isolation hindered creativity, on the other end, too much involvement from colleagues who lack knowledge of counselling or have different ideologies around patient care restricted participants’ creativity. physical environment. five participants, representing a participation rate of . %, reported five incidents of how their physical work environments hindered their creativity. participants cited incidents involving lack of personal office space; bare, unwelcoming treatment rooms; treatment rooms that were too hot and uncomfortable; having the office being located in an unsafe part of the city; and finally participants cited risk management elements that included the presence of security fencing and locked wards. all of these physical environment factors hindered the participants creativity because it either affected their ability to be present as in the case of rooms that were too hot, or the environment limited options such as not being able to go for a walk with the client because the neighbourhood was unsafe of they could not leave the grounds of the facility in the case of forensic settings. lack of special topics education and training. a lack of training and education regarding special topics such as issues clients face or particular approaches to therapy had participation rate of . % and seven incidents reported. participants reported feeling that their creativity was hindered because they felt the lacked a solid grounding in the approach or the issue and were hesitant to try things out of concern of potentially causing harm to the patient. one participant reported that she did not think her basic master’s degree fully prepared her for the complexity of her role. specific areas of training and education were identified. the lack of trauma training was identified by two participants as hindering their creativity. training around eating disorders, as well as training in art therapy were identified. one participant talked about how, when she felt she lacked a solid grounding in an approach, her creativity was hindered: a thing that gets in the way is i don’t know a lot about like art therapy, so i’m hesitant to sort of get into stuff when i don’t really know what i’m doing in that regard… i feel if i went and took an art therapy course, even just like a basic one to give me a foundation, i’d feel more comfortable. so i can do the stuff i know but to go into do an art type thing i would feel like … it was … outside my area of expertise. i don’t like to do anything unless i understand what i’m doing. i don’t want to do any harm to the client because i did something weird. you don’t want to do it wrong… with mindfulness i feel like i can go in and battle any psychiatrist that asks me any questions about what the heck i’m doing because i know it so well. if i was to try something new in art and take a risk and try out something, i would feel like i would have a harder time with that, because i don’t know how to defend it, so i don’t often take risks like that that might actually be okay, just because like i don’t have a strong knowledge in it. so this participant illustrated what the others felt about specific areas of training they felt they lacked. because they did not feel they had a solid foundation in an issue or an approach, they did not feel they could ethically risk experimenting and potentially harming the client. as a result, their creativity was limited because they did not feel like they could try something new without the education and training to support the new approach. . wish list item categories in total, wish list items were reported which were separated into twelve categories. all categories are reported. table . wish list items wish list categories number of incidents % of wish list items number of participants % of total participants . more special topics education and training . % . % . more resources . % . % . alternative therapies . % . % . therapeutic space . % . % . integrated co-occurring disorders centre . % . % . services integration . % . % . supportive management . % . % . more time . % . % . more time with creative people . % . % . client factors . % . % . more autonomy . % . % . preventative work . % . % total number of wish list items: more special topics education and training. the largest wish list category represented the desire of participants, representing a participation rate of . %, reporting incidents, for more special topics education in training. participants reported seeing clients with complex needs and felt that knowing more about certain kinds of client experiences like trauma, bereavement, psychiatric symptoms, and personality disorders would help with their creativity. participants also reported that they would like training in specific interventions and approaches, including buddhist psychology, experiential approaches, dbt, existentialism, gestalt, families and systems to enhance their creativity and provide alternatives to talk therapy. for example one participant stated a desire for “training needs are prevalent … we're seeing more and more kids with trauma, ptsd stuff”. another participant listed a number of different types of training she would like to engage in to aid her creativity. the participant stated “i feel like i need to know more about dbt…i want to do art therapy … it would be great to get a bit more marriage and family stuff because i do … some couples counselling and some family counselling”. a participant described how family attitudes towards abstinence models, referenced above in the hindering factors section, sheds light on how, unintentionally at times, families can hindering counsellor creativity and impact the therapeutic process. in this light, obtaining training in a range of different approaches, including family counselling, could enhance counsellor training. therefore it is no surprise that additional education and training tops the wish list category. more resources. six participants, representing a participation rate of . % reported eight incidents of wishing for more resources. some participants wanted more material resources such as inspirational posters, comfortable sofas, yoga mats, and a kettle to help create a therapeutic environment that enhanced their creativity. others wanted reference materials such as books, dvds, and workbooks. others wished for physical spaces such as their own office or an art studio to be able to creatively express themselves. yet others wanted human resources such as more direct clinical supervision and more client access to stand up for mental health, an organization that teaches individuals with mental health issues to perform stand-up comedy.	
  one participant stated that she would like more reference materials along with holistic materials such as “books, dvds, work books in particular, …videos… more of my holistic health stuff that i could incorporate” to enhance her creativity.	
   alternative therapies. five participants representing . % of the sample expressed a desire to bring more alternative therapies into their practice to enhance their creativity. some of the examples that participants gave that would enhance their creativity included using more music, art therapy, theatre, dance, aroma therapy, companion animals, pet therapy, bach flowers, yoga and mindfulness activities or resources. on participant stated, something else where i can be creative is yoga. i think it helps me with helping my clients to relax. but i do yoga myself so … it's like looking at whether there would be an opportunity to use yoga with a group of clients. other participants stated interest in learning about art therapy, eastern medicine practices and aromatherapy as alternative approaches they would like to be able to incorporate into their practices to enhance their creativity. therapeutic space. four participants, representing . % of the sample, reported desires for more therapeutic spaces to aid their creativity. therapeutic spaces included concrete elements as well as things like more confidentiality as a result of not having to extensively document sessions. for example, one participant wished for “a garden area outside where there's … a pond with animals, where you can go and meditate, do relaxation in a serenity environment, a healing supportive environment”. another participant, working in forensics, wanted a safe place for clients where their every comment or behaviour was not observed and charted. the participant felt that the lack of confidentiality in the forensic environment severely hindered creativity, and creating a therapeutic space that allowed for the most basic of counselling practices, confidentiality, would enhance his creativity and the safety for clients. integrated co-occurring disorders centre. four participants, representing a participation rate of . %, identified having an integrated centre for their co-occurring disorders clients. generally, it was envisioned as a “one stop shop” where the diverse needs of these complex clients, whether it was housing, food, employment, education, physical health care, advanced psychological services, group and individual therapy, yoga and wellness could be met in one place. one participant stated that she has this “vision of having [a] centre for youth concurrent disorders. my vision is this place where … kids could get everything they need. they wouldn't have to shop around …it would all be there. housing, … school, … liaisons, health”. services integration. throughout a number of the interviews, several participants described incidents involving the segregation of services for clients with co-occurring disorders. in term of wish list items, three participants representing a participation rate of . % desired greater service integration and therefore access to services for themselves and for clients as an item that would foster their creativity. service integration was different from an integrated centre in the sense that the centre was conceived as a one-stop- shop; whereas, services integration was a systemic vision based on a desire to see greater collaboration and partnership within existing services and with the private sector such as restaurants that could provide food for clients. for example one participant stated that she wished for, greater access to services… you have to take care of your basic needs before you can move on. food, shelter clothing. a lot of our clients are hungry. they can't afford to eat properly. they're eating … food bank food … teach them the skills of how to cook, so then they can maintain that … if they've got the resources, but at least they'll have the knowledge then, right? get them involved in employment. get them involved in bettering their whole life…look at, how can i help improve the whole person and their whole quality of life this wish list category addresses the complex needs of clients with co-occurring disorders. in these two incidents, the participant describes how often these clients do not have their basic needs met. given that client factors were seen as hindering factors to counsellors’ experiences of creativity, it is easy to see how clients may be unwilling or unable to respond in session, despite a counsellor’s creativity, if they are concerned about food, shelter and clothing. if clients’ basic needs were met, counsellors might have more space to be creative rather than either triaging basic needs or referring clients to other services. supportive management. supportive management appeared as a wish list item category with two participants representing . % of the sample reporting three incidents. since supportive management was identified by . % of the participants as a helping factor and unsupportive management was identified by . % of the sample as a hindering factor it logically follows that supportive management could appear, in some capacity, as a wish list item. in this category, one participant wished for more administrative support, specifically to have someone complete statistics, reports and clerical work like filing so that she would be freed up for more creative and therapeutic work with the clients. the other participant wanted management to support her in her use of alternative therapies such as aromatherapy, bach flowers and the use of companion animals or pet therapy. the additional clerical support as well as the support to use alternative therapies to enhance creativity required supportive management in order to be able to enact these participants’ wishes. more time. two participants representing . % of the sample reported three incidents involving a desire for more time. it is included here to more fully describe the participants’ experiences in their context and their practice, particularly since time pressure was identified as a hindering factor. the participants desired more time because there were so many things that they would like to do, but could not because there were not enough hours in the week. more time with creative people. as with several categories above, the desire for spend more time with creative people emerged as a wish list item category with two participants, representing . % of the sample, reported two incidents. it is included here to more fully describe the participants’ experiences in their context and their practice, particularly since collaboration with other creative colleagues appeared so often in the helping factors data. one participant described his wish to spend more time, “with people who are interested in this same thing, building the herd. … imagine a community of folks committed to being awake and helping each other wake up. it would be very cool”. access to, and time spent, with other creative people was desired because the chance to hear and exchange new ideas and to inspire each other would enhance their creativity. client factors. wishing for different characteristics amongst clients emerged as a category with two participants who reported two incidents. it is included because the wish list items corresponded to the client factors category reported by . % of the sample as being helpful. in addition, client factors were reported by . % of the participants, forming the largest of the hindering categories. one participant wished for clients who would be more willing to be more creative which would give her more options and opportunities for her own creativity. the other participant wished that clients would refrain from regularly gossiping and complaining about each other in a residential setting. the participant felt that if she spent less time addressing the complaints she would have more time and energy to be creative in session with the clients. more autonomy. one participant representing . % of the sample cited incidents involving autonomy as wish list items. given that incidents involving autonomy as a helping factor were reported by . % of the participants, it is not unreasonable to predict that autonomy would appear as a wish list item. the participant who wished for more autonomy wished for autonomy both for herself and for her clients. for herself, she wished for more freedom to use her clinical judgment to select approaches and interventions she thought would be therapeutic for the client but that may fall outside the evidence-based canon. in addition, she wished that there were some freedom to try interventions and approaches and potentially fail. this individual worked in a forensic environment where risk management was always considered in treatment planning, and where experimentation with the potential for risk was suspect. she thought having more freedom to try different things, even if they may not work, would enhance her creativity. interestingly, this participant also wished for more autonomy for her clients in terms of basic things like when, how and what to eat or when to sleep. she felt that if the clients were empowered to make their own choices, they would be less passive generally and might become more engaged in their therapeutic work, which would, in turn, enhance her creativity. preventative work. finally, wishing for the ability to do preventative work appeared during one interview. generally speaking, based on the participant’s comment, the mental health and addictions services in place are reactive, rather than proactive. as such, it was important to include this desire to do more preventative work as an opportunity, not just to bring more creativity into practice, but to have a potentially positive impact on clients’ lives. the participant described why a desire for the ability to do preventative work was so important to him. [i would] love to do more prevention work. so much of what our system has become … dealing with things after the fact…. people don’t usually seek out services until they’re already in dire straits of some kind…. very few people come to services up front, and when they think they’re heading down a path that might be, problematic, and further still, seek out services just for the sake of increasing their awareness of things. this participant felt that the opportunity to be proactive and create preventative services, which are rare in the system in which he works, would enhance his creativity rather than generating reactive services only. . contextual findings all participants were asked about their definition(s) for creativity and how they used it in practice and almost all of them gave specific examples of times when they were creative in their practice, working outside of the box as lumadue et al. described. definitions of creativity. all of the participants provided their own definitions of creativity. themes emerged within their definitions including being “flexible and adaptable” as well as being open and accepting of the clients’ experiences. some participants spoke of being in “flow”, while others talked of creativity involving experimentation, adding a personal touch and ultimately, creativity as an artful way of being. the theme of openness was prominent in the data. for example, one participant stated, “creativity to me means openly meeting the person where they're at and looking; being open to a whole repertoire of possible ways of approaching. in any given situation”. another participant described creativity as, being open to experiencing what's happening right now and not predetermine it. because i understand … creativity would be seeing things that otherwise would not be generally seen. so if you can actually be present with the current situation, creativity is responding in a conscious, alert, dynamic way, rather than in a rote way. another participant defined creativity as something that is not done in a rote way. she spoke of creativity as being, “"[outside] of any prescribed theories or specialty manuals... it’s being open to … co-creating with the client”. for this participant, she saw clients playing an integral role in her creativity where the client would meet with her in a therapeutic space to co-create solutions to the client’s challenges. her definition of creativity affirms the role of the client in counsellor creativity. another participant acknowledged the role of the client in the counsellor’s creativity. the participant stated, i define creativity not as -- a way of working with the client in a way that works for them that stimulates them to engage and to stay interested in whatever it is that is the target of the therapy. it could be the target behavior, it could be depends-- -- in my area it's usually the target behavior. so working with the client in a way that speaks to their perspective, their lens of learning. these participants acknowledge the role of the client in the creative process of counselling, but creativity would not be possible, or at least more difficult within the framework of these definitions, if the counsellor was not open to the idea that the client brings some expertise or ability that the counsellor can draw upon to instill creativity into the therapeutic process. therefore openness is a key feature of creativity, and this openness requires a certain comfort level with ambiguity in the moment. several participants related flexibility and openness to being in “flow”; flow also requires openness and comfort with ambiguity. one participant described creativity as flexibility, being in flow and allowing for technical eclecticism. another stated simply, “creativity means ... spontaneous flow. it means letting happen what is rather than forcing something to be”. other participants used the “thinking outside of the box” metaphor to define creativity. one stated, “i think creativity in some ways is more thinking outside the box with maybe a different approach to people or how to deal with them.” another participant elaborated, “ i would define creativity as thinking outside of the box in terms of sorting out new ways to work on issues that are suitable or make sense for specific people, because not everything works for everyone. and while there are definitely a lot of standard techniques that work really, really well, each client is different and requires a bit of improv in sorting out how to best help that person. so i guess i think of creativity as being adaptable. so like openness, the theme of adaptability appeared fairly consistently in participants’ definitions. yet another participant described creativity as thinking out of the box and being willing to take risks that something may or may not be effective. she said creativity is, thinking outside the box. but being creative, it's … coming up with your own ideas or ways of doing things. so there's thinking outside the box, but it's still …not just thinking, okay, what did that person do over there and bring it here. no, no, no, it's thinking, … putting things together and coming up with something unique of your own. that may or may not work but at least it's being open to trying different things, different ideas or different ways of doing things. so while participants saw thinking outside of the box, borrowing ideas from others, there was an element of putting one’s own, unique stamp on the creative product to ensure something that works for each, unique client. generating unique responses to unique individuals requires experimentation and a willingness, an openness to the possibility of failure. on participant alluded to risk taking and spoke concretely about the role of experimentation in creativity. she said, [creativity] is about -- for me is about ...the art of life. ... i think about it ... [as] pushing the envelope, ... experimenting, trying something new, going places where you might not know, but you know ... that kind of stuff. ... and being happy doing it too ... you have to enjoy what you do. in this instance, creativity, and the role experimentation plays in creativity, formed a joyful way of being. creativity was seen as integral to the “art of life”. another participant referenced creativity as an artful way of being. he stated, “creativity isn't just a concept, it has to be manifest, so it has to be some product, essentially… i think someone can [create] an artful life. but it would be manifested in relationships and certain … elegant, aesthetic of living.” these two participants expand creativity beyond interventions and program designs to include the creativity in forming relationships. certainly throughout the interviews, participants reported incidents where they used their creativity to engage clients and involve them in the therapeutic process. for some of them, their creativity manifested in the artful way they established and maintained their therapeutic alliances with clients. there was one outlier in the group who defined creativity as “people who are artists”. this study was open to any concurrent disorders counsellor who was currently seeing clients. they did not have to identify as using creativity in their practice or as being creative themselves. indeed this particular participant did not view herself as creative at all. she talked about people she saw as creative in her personal life and at her place of work, but she did not see herself as creative. yet as she talked about her work, the things she accomplished, and her visions for her future, there was no doubt in my mind that she was creative. she had created an entire series of groups that had not existed prior to her employment in her setting and had the ability to get her groups approved by conservative, ideological management. there were all kinds of examples of her creativity in the interview, and yet she did not view herself as creative because of her definition. at one point she said, p: i always try to sneak at least a little bit of mindfulness in somewhere. … i: i think it’s incredibly creative. p: i never thought of it as being creative, i don’t know why. just because my whole definition i guess has been what it has been. i: well, how many … other counsellors in forensic settings do you know who bring in principles from buddhism and mindfulness in … p: none. yeah. i: so there’s the novel piece that has a practical application. p: yeah and the patients like that and they respond really well. during this interview, the participant reported that her definition of creativity was shifting and that it helped her to recognize her own creativity. the definitions supplied by the participants shared several key features. common amongst the definitions were the ideas of flexibility, adaptability, openness, flow, willingness to acknowledge the client role in creativity, and a willingness to take risks and experiment. ultimately for some of the participants, some or all of these elements culminated in creative, artful ways of being. examples of creativity in action. almost all of the participants gave specific examples of how they implemented creativity to create an intervention or engage clients which are well represented in the findings chapter. many participants spoke of trying to find creative responses to meet the unique needs of unique individuals in order to respond effectively and further the therapeutic work. often, creativity emerged as a result of an interplay of a number of different factors. for example, one participant explained how client feedback and collaboration with a colleague intersected to enhance his creativity: so after awhile, … you get such a good rapport with [clients] they get comfortable enough … telling you group today that wasn’t too good, or this really worked well….just the way they react and respond to different ideas. when i first started going to the clubhouse … i basically started with a very dry … talk lecture … group on whatever topic, or taking the dry, boring videos that were made… somewhere in the united states, and it just didn’t work, people didn’t like that stuff…i was able to get some of the youth counsellors at addictions to share some stuff with me … and i figured okay, that’s … working with a mental health population….so we started doing more experiential stuff like games. one of the counsellors there had developed a powerpoint presentation in the form of jeopardy for addiction questions. that worked…that was a riot. this participant found that looking at what wasn’t working and using it as an opportunity to be creative, drawing on client feedback and colleagues’ experiences led to creative solutions. another interesting example came out of the interview with a participant who worked primarily in cbt and mi. she described how even through she worked with imposed models, she was still able to be creative. as others have said earlier, she drew upon the client as her source of inspiration and was open to adapting to the clients likes and strengths. she described working within a an imposed model but doing so creatively drawing upon client factors, resources and her training in cbt to adapt the model to meet the client where he was at: if a client really loves art and we're doing cbt, we would do posters….one of my ways which i think i'm most creative with a client who had iq [of] about . and …his ability to learn was quite impaired. and verbally he had tremendous limitations. but he was a very visual, he loved art … our connection between the two of us was really … the model i was using for treatment. but within that, we were doing posters. like how do i cope with cravings? we were drawing pictures, we were cutting out stuff from magazines and posting it on posters. and colourful markers … so really, it's cbt, you're still doing cognitive and behavioral strategies, but you're doing it in a creative way that speaks to the client. the above two comments illustrate how the individual factors interact to enhance counsellor creativity and effectiveness in working with clients with significant challenges and complex needs. is creativity important to the counselling process? although not part of the original questionnaire design, it became clear from the interviews that an assumption was being made, the assumption that creativity was important in counselling. because this assumption is so significant, i began asking participants what their thoughts were. seven out of nine participants who were asked if creativity was important responded in the affirmative. one participant responded, that creativity was important, “because each client is a unique individual in a unique circumstance. approaching without creativity negates this fact and invalidates them and the work”. in another statement affirming creativity’s importance in counselling, the theme of acknowledging clients uniqueness and the uniqueness of their situations continued: creativity is important for counsellors because we must endeavor to meet the client where they are at as opposed to trying to fit the client into a preconceived modality akin to 'this pill for this ailment' [while respecting] ethics and evidence-based practices. the above participant acknowledged the importance of being both creative while also attending to evidence-based practices and ethical behaviour. another participant commented about how creativity is essential in counselling while attending to core principles and protocols: i understand creativity to be the opposite of rigidity or a predetermined approach to a person or problem. there are certainly fundamental principles that need to be applied to practice as well as specific protocols, but creativity involves openness to experiencing each client as new and unique and to enter the relationship with fresh eyes. creativity is therefore essential for good practice finally two participants explained the function and benefit of creativity. one stated, yes, i believe creativity helps me to help my client(s) with providing different options and ways of looking at how a client may be impacted by the events in their lives. it also provides different ways of looking at things with different clients, otherwise it would be very boring! in this example, the participant indicated that creativity helped shift perspective and helped to generate alternate possibilities. another participant related creativity with achieving outcomes. she said, i think creativity is absolutely essential in my work with clients. i believe creativity helps the client to achieve their desired outcomes. i believe this because by being creative, the therapist is able to be flexible and responsive to the client rather than trying, or expecting, the client to fit into a particular approach. achieving desired outcomes and the process of being creative also helps to make counselling enjoyable and rewarding for the therapist. in this instance, creativity was seen as necessary for effective practice. and as with the participant comment above, creativity was seen as helping to keep the work fresh and enjoyable. as we read from some of the participants’ definitions of creativity as being part of the art of life, it would seem that creativity combines both the evidence-based science and the art of being in counselling. it should be noted that the two participants who did not respond to the question if counselling was important, both work in a strict imposed model where incorporating creativity, according to their interviews, into practice is problematic. the remaining two participants did not respond to any attempts at contact after the interview concluded. participant response to the research process. finally, one thing i found interesting as the interview process progressed is that i assumed that the participants would very busy and they would be eager to move me in and out as quickly as possible. during the informed consent process, participants were advised that the interviews would last approximately ninety minutes. many of the interviews went well beyond that time limit. some interviews, combined with a follow up session, lasted as long as two and a half hours. participants had lots to say about their creativity and what helped them to be creative and what impeded it. furthermore, some participants reported seeing a shift in how they viewed creativity and how they saw themselves as being creative. one participant reported i'm thinking creativity -- it's very interesting….because you use the word creativity a lot. and yet when you're asking me the questions it's more about in a context for me that puts it into finding out more about myself or my clients. and i'm just sitting here and thinking, but creativity is taking the word create and make something different with it. so i guess in that way i'm doing it and i have to try to help my clients do it. the participant found the interview process interesting and indicated that he experienced a shift in awareness of creativity. the participant who originally defined creativity as something only artists can do, also described experiencing a shift in her view of the nature of creativity. for some of these participants, the interview process appeared to be beneficial given the time they spent sharing their experiences and the shifts they described. chapter : discussion now that the findings of this study have been examined, we move to contextualizing the findings and exploring the implications. we return to the research question to guide the following examination of the fit of the findings to the literature, unique findings, and practical implications on the area of concurrent disorders counselling and counselling in general. finally, the study’s limitations will be discussed along with possible future research and concluding statements. . research question this study investigated the research question: “how do counsellors working with clients with concurrent disorders experience creativity in their practice, and more specifically what helps and hinders them in their use of creativity?” a secondary question asked was “how do concurrent disorders counsellors define creativity?” eleven concurrent disorders counsellors were interviewed and incidents were reported. incidents were grouped into helping, hindering and wish list categories to create a clear, logical and helpful framework to meaningfully explore and discuss the results. through the research process, the incidents reported and the analysis of those incidents answers both questions. . fit with the literature several key themes emerged from the findings that should be viewed within the context of the literature. although there are no known studies of factors that aid and hinder the creativity of concurrent disorders counsellors, there are two relevant studies that fit with the findings of this study: mills’ ( ) study on the helping and hindering factors affecting career practitioners’ creativity and amabile and gryskiewicz’s ( ) study investigating the helping and impeding factors of research and development scientists’ creativity. some of the general literature on creativity in counselling applies as well. working within imposed models amabile and gryskiewicz ( ) found that researcher’s lack of freedom in deciding how to do one’s work with the method dictated to them was the single most cited type of hindering factor for creativity in their study. mills ( ) also found that career counsellors who had to work within a prescribed theoretical framework felt their creativity was hindered. consequently, it is not surprising that imposed models emerged as a significant hindering factor in this study. of the sample, . % of the total participants and % of the participants working in forensics reported incidents that fell in the imposed models category. even though the concurrent disorders counsellors working in forensics were adhering to prescribed theoretical orientations such as cbt or mi in their practices, they still managed to utilize creativity in their practice by introducing a creative approach like incorporating art into cbt work. one forensics-based participant described creativity, previously cited in chapter , as the “medium to find what works”. participants in other settings, either residential or community, who spoke of what helped them be creative cited many more incidents where they had the autonomy to choose any intervention or work from any theoretical background provided there was some evidence for it. autonomy as a helping factor was key in amabile’s studies; whereas, it was not as prevalent in mills’ study, which only provided one example of a lack of autonomy cited in the work environment category as a hindering factor. of note was the unwillingness of all but one participant to use the terms risk or risk-taking as being helpful to their creativity. during the interviews it was clear that participants were experimental, taking reasonable risks informed by research in their practice; however, almost all of them did not resonate with those terms. several were very quick to deny that they took risks or experimented or said they did not want to descend into experimentation. as the interviewer, i almost felt we were playing a game of semantics, trying to describe risk-taking without the negative connotations. amabile and gryskiewicz found that risk-orientation was a key factor in creativity. it is possible that risk and experimentation is associated with being irresponsible or potentially putting the client at risk for being harmed which would be unethical and therefore counsellors’ shy away from the term. further research into why counsellors do not often describe their creativity in terms of risk could be interesting. other helping and hindering factors and wish list items personal factors emerged as both helping and hindering factors in this study. amabile and gryskiewicz’s study also found personal factors playing a role. they mention being unconventional as a factor. one person mentioned “not fitting into the norm” as being helpful. being flexible, open, curious, and non-judgmental was often cited by participants in this study as it was in amabile and gryskiewicz’s. curiosity also emerged as a helpful personal factor in mills’ study. amabile and gryskiewicz found that encouragement from management, constructive feedback, collaboration, resources, and shelter from pressure, enhanced researchers’ creativity. these findings correspond to some of the findings in this study. supportive management, which included sheltering participants either from other managers or from external pressures such as outside stakeholders, was a significant category. likewise, collaboration, feedback from clients and access to resources corresponded. on the hindering side, they found that lack of resources, incompetent or uncaring management, lack of collaboration, overly formal or complex procedures and political issues hindered creativity. their findings correspond to unsupportive management, particularly in the case of the participant who talked about leaving three positions because of uncaring management. unnecessarily complex reporting systems as part of the bureaucracy category somewhat relates to their findings, as does colleagues who were unsupportive. one of the most interesting parallels was the political issues hindering creativity. one participant did discuss how some stakeholder’s adherence to abstinence-based models and resistance to harm reduction hindered his creativity because it lacked opportunities. resistance to harm reduction is rooted in ideology and it is clear from the federal government’s litigation against ‘insite’ that there is significant resistance to harm reduction at the highest level of government. given that the sample size of this study was only eleven, it would be interesting to know if others felt that politically motivated activities hindered their creativity. mills found that clients aided career counsellors’ creativity. her findings corresponded to the role of client factors in this study, as well as the influence of clients on what works in therapy in general (hubble et al., ). therapists considered to be successful in practice, tend to draw upon client factors, using a strength-based approach (bohart &tallman, ). one participant of this study specifically noted that seeing clients’ courage and resilience helped her be creative, while another gave several examples of how clients’ successes inspired her creativity. yet another talked of how a client was ready to reduce his use of substances. all of the examples illustrate how clients’ strengths played a role to inspire and enhance the counsellor’s creativity. the clients who demonstrated progress and had some successes during the time they were in contact with the counsellor helped their counsellor’s creativity. this factor corresponds to amabile and kramer’s ( ) “progress principle”. mills also found that colleagues, professional development, and personal activities/methods such as doodling helped career counsellors’ creativity. these findings are somewhat related to the importance of colleagues, personal practices such as the use of diagrams and drawings, resources and the training categories in this study. in her work environment category, mills found that unsupportive supervisors, lack of colleague support, lack of resources, and limited access to professional development impeded career counsellors’ creativity. these findings correspond with the findings of this study. three participants stated that they wished for greater integration of services. mhcc ( , ) and other stakeholders have advocated for better integration and coordination of mental health and addictions services and programs, as well as improved collaboration services delivery. mhcc’s assertions match with the desire of participants for more integration of services. one participant spoke at length about her frustration with the system and how colleagues would pass off clients with concurrent disorders. mhcc envisions a remodeled system in which individuals with complex concurrent disorders will have their needs met within a holistic, coordinated manner so that they will not disappear in the gaps between services as they are passed between services. given that collaboration was considered to be helpful for concurrent disorders counsellor’s creativity, increasing opportunities for collaboration to enhance creativity could lead to creative solutions around improved integration and coordination. definitions and components of creativity. common themes between participants’ definitions of creativity emerged in the data which corresponded to the definitions in the literature. lumadue et al. ( ) wrote “creativity, as discussed within a mental health context, speaks in part to a therapist’s willingness and ability to responsibly and creatively think outside the box, while fostering in their clients their own creative and innovative capacities to consider and work through issues and problems” (p. ). several participants spoke of working outside of the box as being a defining feature of creativity. csiksentmihaliyi concept of flow also resonated throughout their definitions. participants defined creativity using words including flexible, adaptable, open, and flow. glover, ronning & reynolds’ (as cited in heppner et al., ) definition: creativity is a process that “involves the combination of information, often in unique and novel ways, that is ultimately used to elucidate or solve a client’s problem by extending the client’s experiential world in some way” (p. ) was also echoed in some participants’ definitions. one participant spoke of being outside of any prescribed theories, which speaks to behaving or generating novel, applied approaches. similarly, another spoke of drawing on other sources but putting her unique stamp on it. many of the incidents cited by the participants also included examples of solutions to problems such as the creation of an effective safety plan for a suicidal client, the reduction of substances, and engagement of clients. furthermore, the playfulness and the improvisation that participant described fit with several authors contentions that play and improvisation are integral to creativity and to the therapeutic process (bohart, ; panksepp, ; rankin, a; winnicott, ) in addition, several of the participants reported that they saw creativity as essential to being effective and helping clients achieve their goals. their understanding of creativity as important or essential in counselling aligns with several researchers who state that creativity is essential (carson & becker, ; gee et al., ; hecker & kottler, ) . unique findings there is no known, published research investigating the experiences of concurrent disorders counsellors use of creativity in practice. there is one study exploring the experience of career practitioners experience of creativity (mills, ) and while there were some similarities, many of the findings of this study are unique and will be discussed below. meditation and mindfulness. meditation and mindfulness as a helping factor was initially surprising, particularly since mills ( ), did not find something similar. however, as previously mentioned in section . , meditation and mindfulness is discussed in the addictions treatment literature, which given the systemic separation of co-occurring disorders into mental health and addictions, participants would be familiar with. given that participants associated meditation and mindfulness with acceptance and not being attached to rigid frameworks, it was important to isolate it and pull it from the personal and professional practice category. one participant described how colleagues often do not want to work with clients with co-occurring disorders personal therapy. three participants representing . % of the sample shared that attending counselling sessions themselves benefited their creativity. another participant, who did not cite therapy, shared how countertransference hindered both his creativity and impacted the relationship with the client. of all of the findings, i think this is the most significant one and the registered psychologist who served as an expert to validate the categories agreed that it was an important finding. i wonder if the participation rate is actually higher than reported. there is stigma around seeking therapy and it is possible some counsellors may not want to discuss how creativity may be affected by doing personal therapy. there was one participant who mentioned his own recovery process and intimated that that it was helpful to his creativity but he did not specifically mention personal therapy nor did he cite an incident that could be used in the results of this study. it is possible however that participants did not disclose their own personal therapy because they did not see it as relevant to their creativity. exploring a relationship between personal therapy and the creativity of counsellors could be an area for further research. imposed models. mills addressed some elements of restrictions in her similar study. however, the field of co-occurring disorders has a distinct feature, risk management that is not a concern or not often a concern in traditional career counselling. several participants spoke of the limitations of having to utilize evidence-based models within the medical model they worked in and for some, particularly in forensic psychiatry, risk management was a prominent consideration in how they had to approach clients, and therefore the counsellors in these settings were required to adhere to approaches considered to be evidence-based. the medical model does not generally apply in career counselling, and mills’ sample did not include any counsellors practicing in a forensic setting where risk management may have been an issue. in addition, the imposition of other models, such as abstinence-based models, and the denial of the harm reduction models was referenced in three incidents by a participant who felt the beliefs of stakeholders, including three levels of government, police and families, impeded not only his creativity and his ability to implement potentially effective interventions, but also the opportunities for clients to meet their goals in achieving wellness. all of the participants worked in some kind of health care setting, and in a publicly funded health care system with multiple levels of government involved as well as other systems that interact like social work, policing, forensics to name a few, counsellors are not completely autonomous. it is a very distinct challenge that concurrent disorders counsellors face when some stakeholders reject and limit harm reduction approaches that afford opportunities and possibilities for creative solutions to clients problems. more special topics education and training. that participants would desire more education and training is not surprising. what was unique about these findings was the type of training that participants wanted, because often counsellors refer clients with different needs to other practitioners, but the participants in this study wanted to enhance their creativity and options to be able to address clients’ needs more holistically. education and training involving trauma was mentioned by participants, illustrating the particular need for the client population being served. some participants wanted dialectical behaviour therapy (dbt) training and discussed their work with clients diagnosed with borderline personality disorder. art therapy was mentioned, and couples and families counselling was also specifically identified. burnout or lack thereof. one unique, and surprising, finding was the lack of incidents referencing burnout. although mills found a participation rate of % for burnout in her study of career practitioners, only one participant in this study used the term burnout and this person was referring more to exhausting ideas and being in a state of low energy than a more clinical state of burnout. concurrent disorders counsellors are susceptible to burnout because of the complex nature of the clients and the enduring nature of their concerns; however, none of the participants reported being in this state. the lack of mention of burnout may be due to the nature of this group, as counsellors experiencing burnout may not volunteer to participate in a study investigating creativity. . practical implications as mills noted in her study, many participants enjoyed the interview process as it helped them explore and clarify their own experiences and understanding of creativity in counselling practice. one participant initially stated that she was not creative at all, and by the end of the interview she reported how she could see how she was creative and that her own definition of creativity as being done by artistic individuals was perhaps too narrow. three participants specifically expressed curiosity in the results, wondering if their views were similar to others. it could be beneficial for concurrent disorders counsellors, and possibly all counsellors, to consider creativity in practice, and what helps and hinders and the impact of their creativity on their clients. another practical implication, borrowing from positive psychology, is that concurrent disorders counsellors may want to reflect further on the helping factors and consider how they can bring more of those features into their lives and their practices while also reflecting on the hindering factors and either limiting them or addressing them, perhaps creative ways, to minimize their effects. some of the participants felt their creativity was hindered by the low motivation for change, particularly amongst mandated clients. as mentioned in the literature review, some researchers and practitioners believe that there is no such thing as an unmotivated client (bohart & tallman, ); the issue is a misalignment between the client’s motivation and the therapist’s motivation. working within an imposed model setting may be part of the issue. one participant working in forensic psychiatry described how having set, linear outcomes for his programs hindered his creativity. in this case the organization had approved predetermined outcomes without taking into consideration individual client’s needs or goals, and did not provide autonomy to the therapist to adjust the treatment protocol to address the client’s concern. so while clients may appear unmotivated, which is a hindering factor for the participant, it may actually be an issue of imposed models and lack of counsellor autonomy that impacts motivation. indeed one participant, who wished for more autonomy for clients tapped into this very issue. therefore counsellors need to be aware that the models in which they work may be the cause of demotivation, and thus they need to advocate for more client and professional autonomy to be able to engage clients more effectively. furthermore, organizations that set treatment policies and standards may want to consider allowing their employees more freedom to use their clinical judgment in a creative, responsible and ethical manner. risk management models certainly have their place in attempting to preserve safety for both clients and staff; however, by limiting counsellor creativity through restricting their autonomy they may be significantly impeding therapeutic processes, which increases costs and limits accessibility of services to other clients who need access to scarce resources. two participants in this study identified a desire to spend more time with creative people and . % of the participants identified collaborating with colleagues as helping their creativity. something that may aid canadian counsellors in enhancing creativity in their practice is the formation of an organization like the association for creativity in counselling, which is a subgroup of the american counselling association. the canadian counselling and psychotherapy association (ccpa) has the creative arts in counselling chapter. however, several participants in this study did not include the arts either in the definition of creativity or in their use of creativity in practice. as such, an organization that recognizes many forms of creativity could elevate the profile of creativity in practice, include more members, generate or support more research and discussion around creativity, and provide professional development opportunities related to creativity. taking it a step further, an international counselling organization with either a focus on creativity or a subgroup focusing on creativity could promote the same opportunities as something on the canadian level but adding the significant benefit of international connections and expertise. furthermore, seven participants at a participation rate of . % indicated that further training in special topics such as trauma and eating disorders, and approaches like dialectal behaviour therapy and art therapy to name a few would help them be creative. university training programs may want to consider incorporating explicit training in the underlying issues of clients, such as trauma, as well as some specific techniques to address concerns in the name of adding a few more tools to the counsellor toolbox. of course not all topics or techniques can be offered in any training program; the cost and duration of such a proposal would render it impossible. nevertheless, participants indicated that they would take techniques and add something to it themselves so some exposure to alternative approaches could be beneficial. in addition, carson & becker ( ) had noted that creativity training is rare in counsellor training. smith ( ) found that % of the sample of twenty-seven beginning counsellors reported that they may have been more likely to use creativity in their counselling practice if they had more training on creative techniques. although not part of the formal interview process, seven participants in this study were asked if creativity was important in their practice, and % of them responded yes. one stated “yes! [creativity is important] because each client is a unique individual in a unique circumstance; approaching without creativity negates this fact and invalidates them and the work”. another participant stated “yes, [creativity is important] because every client is different and has different needs; creativity is the medium to find what works”. furthermore, another participant stated, i understand creativity to be the opposite of rigidity or a predetermined approach to a person or problem. there are certainly fundamental principles that need to be applied to practice as well as specific protocols, but creativity involves openness to experiencing each client as new and unique and to enter the relationship with fresh eyes. creativity is therefore essential for good practice. however, university graduate programs do not typically reward risk taking and experimentation when it results in failure and given that poor marks can affect funding and continuation to further studies, there is a disincentive for counsellors in training to play, take risks and generally be creative in training programs. so if creativity is essential in working with clients with concurrent disorders, and beginning counsellors report they would be more likely to be creative, counselling training programs may wish to consider how they can encourage learners to take risks. finally with stakeholders such as mhcc calling for a revolution in how individuals with concurrent disorders are cared for through the creation of a holistic, coordinated system, the creativity of the professionals engaged in treatment and service provision will need to be engaged. if such a system is to become a reality, the creativity of counsellors will need to be enhanced and nurtured and therefore the findings of this study will be significant. . personal observations the political nature of working in concurrent disorders and how counselor creativity may be subsequently impacted emerged in the data. participants talked about small “p” politics of working within interdisciplinary teams with differing ideologies of care as well as large “p” politics such as the resistance to harm reduction approaches by various stakeholders. it became apparent that the field was highly politicized and that counsellors had to carefully navigate various stakeholders, not just in their use of creativity, but in their work in general. during the participant cross-checking stage, three participants either withdrew or significantly qualified incidents, both hindering and helpful. in all three cases, it was apparent that these changes had political implications either within their specific work places or within the systems that they work that involved multiple provincial government ministries, policing organizations, multiple level of governments and the general public. supportive management in the face of political machinations did help clients to be more creative and effective in their work. however, bureaucracy, a common feature of politicized environments, was an impediment to creativity and counsellor effectiveness. it would be a utopian vision to be able to work with clients in a depoliticized environment; however, i draw specific attention to the political nature of the work because the political is present in work related to addictions and with mental health. in meeting with one of my experts, he identified how blame is often assigned to individuals who use substances. their use of substances is sometimes described as a moral failing for which they are at fault. often this attitude is associated with the moral mode of addictions. morality and politics often co-exist with both positive and negative impacts on the issues to which they are applied. furthermore, the participants’ aversion to using the term “risk” or “experimentation” in terms of developing their creativity seemed related to the political. ethical practice excludes irresponsible risks; however, even the use of empathy can involve risking the possibility that the counsellor may be inaccurate or wrong. also, not all interventions work for all clients all the time, therefore risk seems to be an inherent feature of the counselling process. nevertheless, most participants whose incidents related to risk orientation avoided the term. in addition to working in a field with a code of ethics and responsibilities where professional peer censure is possible, risk management is a central feature in health care and forensic psychiatry. both of these systems are heavily politicized. the idea of taking any kind of risk or describing practices using language associated with risk in environments where risk is to be avoided at best and managed at worst seemed like a risk in itself even in a study where their identities would be protected. further investigation to illuminate the role politics in affecting the counselling of clients with concurrent disorders could be helpful. finally, the personal therapy category emerged as helpful to three participants’ creativity. however, two more participants cited their own recovery processes as being helpful to their creativity. these two participants were not included in the personal therapy category because they did not explicitly identify therapy as helpful, and it is possible to recover from substance use without attending counselling. however, often there is stigma attached to seeking personal counselling that may involve mental health or substance use, or even relational issues. also, seeking counselling can be used against individuals to discredit them. it is possible that personal therapy played a bigger role in counsellors’ creativity; however, there may be reasons that participants chose not to share their experiences of therapy that did not emerge in the interviews, and ecit does not allow for the investigator to pursue those possibilities. . limitations all studies have limitations, so it is important to recognize the limitations of this study. utilizing a snowball sampling approach may have impacted the findings in terms of who volunteered to participate in the study. the sample was narrowed by someone deciding that they knew someone who was creative, and then narrowed further by participants making specific referrals to others whom they believed to be interested in the topic and creative. it is possible that the participants of this study have similar experiences of creativity because they have common backgrounds and work environments. the participants responses may have been different had it been more of a random sample, but such is the nature of recruitment. it is possible that there may be some demographic limitations as well. the design of the study allowed for participants of all cultural backgrounds; however, all participants appeared to be caucasian, and no visible minorities agreed to participate. the lack of visible minority participants may have been due to the nature of the snowball sampling technique. perhaps some feature of the concurrent disorders specialty or the very nature of the career decision making process in choosing counselling as a profession may influence the participant rate of non-visible minorities in the field. furthermore, information about participants’ cultural backgrounds was not collected, but may have played a role in their responses. although all participants appeared to be “white”, alessandria ( ) rightly argues that there are many cultural variations within caucasian individuals of european descent. generally, culture was not explicitly identified by participants as an influential factor on their creativity. however, humour, playfulness and communication styles emerged as helpful personal factors, and these factors can be influenced by culture so it is possible that culture played a role. so in addition to a lack of greater cultural diversity amongst participants, the ecit protocol may have been a limitation for, as a researcher, i was not able to deviate from the structure in order to explore the potential underlying influence of culture on creativity in counselling. related to demographic information, although this study was open to individuals with doctoral training, all of the participants had masters degrees, leaving out an entire group of professionals who work with clients with concurrent disorders. again, snowball sampling may have been a factor in this regard. it is also possible that while psychologists and counselling psychologists engage in therapy and counselling, they may not identify themselves as counsellors and therefore self-selected out of the study. another limitation of the ecit approach involved the personal therapy category. given that two participants reported that their recovery from substance use helped their creativity, but did not explicitly cite therapy as being helpful, they were not included in this category. it is possible that they engaged in therapy and it may be possible that it was helpful to their creativity, however, the limitations of the research method precluded me from seeking that information out without it emerging in the incidents. when mindfulness/meditation emerged as a helping category with a significant participation rate, i wondered if the location where the study was conducted played a role. currently on the west coast of north america, yoga and mindfulness practices have entered mainstream culture and i wondered if its role in the culture impacted the results of this study. on the other hand, mindfulness and meditation does appear in the addictions and concurrent disorders literature (brewer, bowen et al., ; brewer, sinha et al., ; groves & farmer, ; marlatt, ; witkiewitz, marlatt, & walker, ). having said that, marlatt was a major proponent of mindfulness informed treatment, and he was based at the university of washington in washington state, a west coast institution. researchers also tend to collaborate, such as marlatt and brewer, with like-minded individuals or how else would anything get done? the study was open to any concurrent disorders counsellor currently counselling clients with co-occurring disorders regardless of the length of their professional experience. there was a small range of settings with one residential, three forensic and seven community health based. a larger sample with a more diverse range of work settings may affect the findings. finally, the very nature of the topic and its place in counselling may have been a limitation. there is limited discussion in the literature about training new counsellors and creativity. also, creativity itself is a complicated process, comprised of different factors, and ultimately an ill-defined concept that can be challenging to measure. it became apparent from some of the interviews that the participants, even when they were being creative, were not sitting around thinking about their work being creative. one participant, at the end of the interview, said that having consciously discussed creativity, he could see now that he was quite creative. as a researcher investigating creativity and immersed in the literature and the practice of it, it was apparent to me all along that this participant was creative but it was not so for this person. another participant thought she was not creative at all, based on a fairly narrow definition of what she perceived it to be. by the end of the interview, she stated that her sense of creativity had shifted and that she could see how she was creative. these examples illustrated that the participants’ view of creativity and the factors that relate to it, are affected by their subjective interpretations and meaning assignations to their experiences and the features that seem most prominent to them at the time. further discussions and elaborations on the topic may again shift their contributions to the research, and this is the nature of research embedded in constructivism. . future research given the lack of research on creativity and counselling in the co-occurring disorders field, there is a continued need for further investigation. this study focused on how participants defined creativity, what helps them to be creative, what hinders them and what they would wish for to enhance their creativity. it excluded a whole range of other interesting questions that could benefit the field. for example, further research could investigate the impact of counsellor creativity on clients. some participants reported that they thought their openness to possibilities and using creativity stimulated the creativity in their clients. although i did ask several participants if they thought creativity was important and why it is important, a systematic investigation of the importance of creativity in counselling could be beneficial. in addition, this study investigated the factors that help and hinder the creativity of concurrent disorders counsellors. mills ( ) explored the factors impacting career counsellors and there were similarities and differences in our respective results. further research could explore the factors of other counselling specialties. a meta-analysis could then be conducted to try and understand what factors affect counsellors at a meta level. additionally each one of the categories that emerged in this study, or in mills’ study, could be explored individually to yield a deeper understanding of how they impact counsellor creativity. specifically looking at the finding that meditation and mindfulness played a role in creativity, it would be interesting to replicate the study with a sample somewhere other than the west coast of north america to tease out whether the popularity of meditation, mindfulness and yoga as a feature of the west coast affected the findings of this study. demographic information regarding the participants’ cultural background was not collected, and all participants appeared to be caucasian. further research involving visible minorities as well as specifically exploring the role of culture amongst all counsellors’ and their creativity could be beneficial. with smith’s ( ) finding that lack of training in creativity and creative practices and this study’s finding that participants desired more education and training to enhance their creativity, further research could be directed toward the possibility of developing curricula that promotes some of the helping factors required for creativity within education and training programs. finally, it is important to note that creativity in counselling does not happen in a vacuum. it comes to be in the dynamic relationship between counsellor and client where client and counsellor factors interact to enhance or impede the possibility for creativity in counselling. further research could explore the nature of this relationship and the role creativity plays in it. or, research into clients and their creativity could be investigated. it seems that there are gaps between research, training and what actually occurs in counselling practice. because creativity is ill-defined and difficult to measure, it is not very well understood in terms of counselling practice. further research into creativity in counselling could serve to narrow the gaps mentioned above, and more fully illuminate how creativity, counsellors and counselling helps clients change. essentially, research examining creativity in practice could help further establish its role in evidence-based practice. . conclusion the participants in this study shared many amazing examples of where the factors that helped them to be creative resulted in their use of creativity with their clients to achieve a result. sometimes the result was engagement, sometimes it was developing the therapeutic relationship, and sometimes it was reduction in substance use. given the increasing demands on the health care system, the role of third party payers, the demands for greater accountability from stakeholders, the limited resources available to support the system, and the complex nature of the concerns of clients with concurrent disorders, innovation and creativity in how we support these clients to live meaningful, productive lives seems paramount. as we have seen in the review of the literature, a number of counselling and psychotherapy experts advocate for creativity in counselling practice, yet despite the repeated calls for creativity, there is limited research on creativity in the practice of counselling clients with concurrent disorders and its impact or on its impact on the counsellor themselves. the majority of the participants in this study indicated that creativity was either important or essential to their practice as concurrent disorders counsellors. this study shed light on the factors that help concurrent disorders counsellors to be creative as well as what hinders them. it also revealed what they would wish for to be more creative and help them in their practice. the study also revealed that concurrent disorders counsellors use their 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( ). existential psychotherapy. new york, ny: basic books appendices appendix a: interview protocol participant #: ________________ date: __________________ interview start time: _________________ . contextual component preamble: as we have discussed earlier, i am researching the ways in which concurrent disorders counsellors utilize creativity in their practice. this is the first of two interviews, and its purpose is to collect information about your experience using creativity when working with your clients. a. as a way of getting started, perhaps you could tell me a little bit about your experience as a concurrent disorders counsellor? b. you volunteered to participate in this study because you identified yourself as using creativity in your practice. what does “creativity” mean to you? a. what has helped you in using creativity in your work? (probes: what was the incident/factor? how did it impact you? can you give me a specific example? how did the incident/factor help you?) b. helpful factor & what it means to participant (what do you mean by ..?) .c importance (how did it help? tell me what it was about ____ that you find so helpful.) example (what led up to it? incident. outcome of incident.) a. are there things that have impeded you in being creative creativity? (alternate question: what kinds of things have happened that made it more challenging for you to use creativity?) b. hindering factor & what it means to participant (what do you mean by ..?) c. importance (how did it hinder? tell me what it was about _________ that you find unhelpful.) example (what led up to it? incident. outcome of incident.) . summarize what has been discussed up to this point with the participant as a transition to the next question: a. we’ve talked about what helps you use creativity (name them), and some things that have made it more challenging for you to use creativity (name them). are there other things that would help you? (alternate question: i wonder what else might have been or might be helpful to you that you haven’t had access to?) b. wish list item & what it means to participant (what do you mean by _____________?) c. importance (how would it help? tell me what it is about ___________that you would find helpful.) example (in what circumstances might this be helpful?) appendix b. demographic questionnaire i. occupation: ____________________________________________________________ ii. number of years in this occupation: _________________________________________ iii. setting in which participant works: _________________________________________ iv. length of time in current job/employer: _____________________________________ v. industry in which the person works: ________________________________________ vi. number of years in this industry: ___________________________________________ vii. theoretical orientation(s) applied in setting: _________________________________ viii. participant’s preferred theoretical orientation: _______________________________ ix. age ___________________________________________________________________ x. sex ____________________________________________________________________ xi. income level (household) _________________________________________________ xii. country of birth_________________. if not canada, length of time in canada _____ xiii. primary language spoken ________________________________________________ xiv. marital status ___________________________________________________________ xv. family status/parental status ______________________________________________ xvi. education level _________________________________________________________ xvii. additional training relevant to practice ____________________________________ interview end time: _____________________ length of interview: _________________ interviewer’s name: ________________________________________________________ appendix c: informed consent form informed consent form “counsellors’ experiences of using creativity in counselling clients with concurrent disorders: what helps and hinders” principal dr. norman e. amundson, professor investigator: the university of british columbia department of education & counselling psychology, and special education - - co-investigator: barbara a. smith, m.a. student the university of british columbia department of education & counselling psychology, and special education -xxx-xxxx this research is being conducted during the course of study for barbara a. smith (under the supervision of dr. norman amundson) related to the completion of a master’s of art (m.a.) degree in counselling psychology at the university of british columbia (ubc). the results of this study will be reported in a graduate thesis to be stored in the ubc library and presented at conferences. it may also be published in journal articles and books. purpose you are being invited to take part in this research study because of you have identified yourself as using creativity in your practice counselling clients with concurrent disorders. the purpose of this study is to help us learn more about how concurrent disorders counsellors’ define and experience creativity in practice as well as what helps them to be creative, what hinders them, and if there are any things they wish they had to help them be creative. procedures if you say “yes” to participating in this study, we will interview you for minutes. during this time, we will ask you about your experiences as a concurrent disorders counsellor and how you define creativity. then we will ask you about what helps you be creative along with some examples. then we will ask you what hinders you in being creative and some examples. we will ask you if you have any “wish list” items that may impact on your creativity. finally, we will give you a brief demographic questionnaire to complete. a second, brief interview will be scheduled at a time and location convenient for you to review the information from the first interview. you will be able to add, delete or change any information at this time in order to ensure the information accurately reflects your experiences. telephone, email or skype contact in the second interview is possible if these methods of contact are more convenient for you. the interviews will be voice recorded in order to ensure accuracy of the information. the recording will be transcribed and given a code number to ensure confidentiality. upon completion of the final report of the study, these audiofiles will be erased. results the results of this study will be reported in a graduate thesis and presented at conferences. it may also be published in journal articles and books. potential risks of the study we do not think there is anything in this study that could harm you or be bad for you. some of the questions we ask may seem sensitive or personal. please let the researcher know if you have any concerns. you do not have to answer any question if you do not want to. potential benefits of the study while this study does not intend to be therapeutic, you may be helped by having an opportunity to candidly discuss what helps and hinders you to be creative in your practice. in the future, others might benefit from what we learn in this study. confidentiality your confidentiality will be respected. information that discloses your identity will not be released without your consent unless required by law. upon signing the informed consent form, your responses with be assigned a code to ensure the maintenance of confidentiality and privacy. you will not be identified by the use of names or initials in any reports of the completed study. all research will be kept in a locked filing cabinet in a locked office, and all computer data files will be password protected. all audio recordings will be destroyed upon completion of the report of this study. limits to confidentiality your identity will be kept confidential. however, there are some exceptions to confidentiality: . if you tell the researcher you are going to harm yourself or someone else, the researcher is required by law to do anything that she can do to reasonably prevent this from happening, . the researcher is required by law to report suspected or potential child abuse/neglect to the ministry of children and family development or the police. . if a vulnerable adult is abused/neglected, a report may be filed with the appropriate governmental agency, and . a subpoena by a court of law requires disclosure from the researcher or submission of research records. payment we will not pay you for the time you take to be in this study. contact for information about the study if you have any questions or concerns about what we are asking you, or you would like more information about the study, please contact either the co-investigator barbara a. smith at - - or the principle investigator dr. norman e. amundson at - - . contact for concerns about the rights of research subjects if you have any concerns about your rights as a research subject and/or your experiences while participating in this study, you may contact the research subject information line in the ubc office of research services at - - or if long distance, email rsil@ors.ubc.ca or call toll free - - - . consent taking part in this study is entirely up to you. you have the right to refuse to participate in this study. if you decide to take part, you may choose to pull out of the study at any time without giving a reason and without any negative impact on your employment. your signature below indicates that you have received a copy of this consent form for your own records. your signature indicates that you consent to participate in this study. _____________________________________ ________________________ participant signature date _____________________________________ print name of the participant signing above thank you for your willingness to participate in this study. v grandia_philip_ _thesis depression self-management i patient-initiated strategies for self-management of depression and low mood: understanding theory and changing behaviour philip m. grandia thesis submitted to the faculty of graduate and postdoctoral studies in partial fulfillment of the requirements for the doctorate in philosophy degree in clinical psychology psychology social sciences university of ottawa © philip grandia, ottawa, canada, depression self-management ii acknowledgements i would like to acknowledge the support of my thesis supervisor, dr. darcy santor, in the conceptualization and development of this project and general guidance throughout the dissertation process. my thesis committee, drs. sophie lebel, jean grenier, and tim aubry, i appreciate your many helpful comments and suggestions on my proposal and pre-read, all of which i believe helped create a stronger final product. for his patience and expertise during statistics consultations, i would like to thank dr. dwayne schindler. the school of psychology main office staff, i appreciate the administrative support you have provided me over the years. finally, i would like to acknowledge the unwavering support of my family and friends, without which i would have never achieved this accomplishment. depression self-management iii table of contents introduction……………………………………………………………………………… context……………………………………………………………………………… background………….……………………………………………………………… depression……………………………………………………………………… depression treatment in primary care………………………………………… stepped-care models…………………………………………………………… patient-initiated strategies for depression and low mood………..…………… bibliotherapy……………………………………………………………….. exercise…………………………………………………………………….. light therapy………………………………………………………………. psychoeducation……………………………………………………………. socializing………………………………………………………………….. symptom monitoring………………………………………………………. other patient-initiated strategies...…………………………………………. adhering to prescribed medications…………………………………… seeking psychotherapy services……………………………………….. patient-initiated strategies in stepped-care models……...……………………... theoretical background……………………………………………………………... knowledge translation and knowledge transfer.……………………………… educational interventions…………………………………………………… definition of k*…………………………………………………………….. knowledge translation……………………………………………………… knowledge transfer………………………………………………………… knowledge translation and transfer integrated……………………………. the theory of planned behavior……………………………………………….. history of the concept……………………………………………………….. theory of reasoned action…………………………………………………. theory of planned behavior……………………………………………….. criticisms of the theory of planned behavior……………………………… applications of the theory of planned behavior…………………………… rationale for the current study……………………………………………………… proposed model of knowledge translation and transfer-based behaviour change.. study overview……………………………………………………………………… novel contributions……………………………………………………………… objectives of the current study…...……………………………………………... research questions………………………………………………………………….. objective – tpb and patient-initiated strategies...……………………………. objective – k* and tpb intervention…………………………………………. hypotheses………………………………………………………………………….. depression self-management iv objective – tpb and patient-initiated strategies..…………………………… objective – k* and tpb intervention………………………………………... hypothesis testing……………………………………………………………… analytic model……………………………………………………………... objective – tpb and patient-initiated strategies………………………… hypothesis ……………………………………………………………. hypothesis ……………………………………………………………. hypothesis ……………………………………………………………. hypothesis ……………………………………………………………. hypothesis ……………………………………………………………. hypothesis ……………………………………………………………. objective – k* and tpb intervention…………………………………….. hypothesis ……………………………………………………………. hypothesis ……………………………………………………………. hypothesis ……………………………………………………………. methods………………………………………………………………………………….. participants…………………………………………………………………………... recruitment……………………………………………………………………… survey completion time limitation criterion………………………………….. attrition………………………………………………………………………….. study sample…………………………………………………………………….. sample differences…………………………………………………………... control and intervention group differences…………………………………. completers and part -only participant differences…………………………. completers control and intervention group differences…………………….. no perceived depression…………………………………………………….. materials……………………………………………………………………………… the optimizing outcomes website……………………………………………… educational interventions for patient-initiated strategies..……………………… positive educational interventions…………………………………………… negative educational interventions………………………………………….. sham interventions for control group…………………………………………... measures……………………………………………………………………………… demographics……………………………………………………………………. depression………………………………………………………………………... locus of health control scale…………………………………………………… open response prior knowledge question……………………………………… theory of planned behavior questions………………………………………… follow-up questionnaires………………………………………………………... research design……………………………………………………………….…….. depression self-management v procedure………………………………………………………………………….…. recruitment……………………………………………………………………... study entry and informed consent……………………………………………... part data collection…………………………………………………………... follow-up data collection……………………………………………………… analyses…………………………………………………………………………….. screening and cleaning………………………………………………………… results…………………………………………………………………………………… descriptive statistics………………………………………………………………… open-response self-management knowledge…………………………………... theory of planned behavior variable ratings……………………………….……... global scores…………………………………………………………………….. attitudes…………………………………………………………………………. subjective norms – significant others………………...………………………... subjective norms – physicians………………………………...………………... perceived behavioural control…………………………………………………... intentions……………………………………………………………………...…. actual behaviour……………………………………………………………….... hypothesis testing…………………………………………………………………... hypothesis ……………………………………………………………………... correlation analyses………………………………………………………… linear regression analyses………………………………………………….. hypothesis …………………………………………………………………….. logistic regression analyses………………………………………………… hypothesis …………………………………………………………………….. correlation analyses………………………………………………………… mixed model anova analyses……………………………………………. hypothesis …………………………………………………………………….. correlation analyses………………………………………………………… anovas……………………………………………………………………. hypothesis ……………………………………………………………………... pearson chi-square analyses………………………………………………… hypothesis ……………………………………………………………………... moderation analyses………………………………………………………… summary of results for objective hypotheses……………………………….. hypothesis ……………………………………………………………………... composite score mixed model anova analyses…………………………... individual strategy scores mixed model anova analyses…………………. attitudes………………………………………………………………... subjective norms – significant others………………………………… depression self-management vi subjective norms – physicians………………………………………… pet therapy mixed model anova analyses………………………………. hypothesis …………………………………………………………………….. mixed model anova analyses……………………………………………. hypothesis …………………………………………………………………….. chi square analyses…………………………………………………………. summary of results for objective hypotheses……………………………….. discussion………………………………………………………………………………… summary of main findings………………………………………………………….. theory of planned behavior in the context of patient-initiated strategies..…..... impact of educational intervention……………………………………………… general discussion…………………………………………………………………… prior knowledge…………………………………………………………………. attitudes and beliefs towards patient-initiated strategies..……………………… general attitudes and beliefs………...………………………………………. comparisons among strategies.……………………………………………… actual engagement………………………………………………………………. the theory of planned behavior………………………………………….…….. antecedent variables predicting intentions………………………………….. intentions predicting actual engagement…………………………………….. affect in the theory of planned behavior model………………………….…… impact of affect on theory of planned behavior variables…………….…... impact of affect on actual engagement……………………………………… moderating effect of affect………………………………………………….. knowledge translation and transfer educational intervention………………… impact of educational interventions on antecedent variables……………….. positive educational intervention……………………………………….. negative educational intervention………………………………………. impact of educational intervention on intentions……………………………. impact of educational intervention on actual engagement…………………... theoretical implications and applications…………………………………………… theoretical implications………………………………………………………….. need for educational interventions on self-management………………………... educational interventions………………………………………………………… limitations……………………………………………………………………………. survey methods………………………………………………………………….. unknown participant characteristics…………………………………………….. sample composition…………………………………………………………….. theory of planned behavior variable measurement………………………..…... variability between strategies...…………………………………………………. depression self-management vii depressive symptoms measurement……………………………………………. open-response question…………………………………………………………. type i error………………………………………………………………………. conclusion………………………………………………………………………………… references………………………………………………………………………………… appendices………………………………………………………………………………... depression self-management viii list of tables table : baseline knowledge of patient-initiated strategies...…………………………… table : correlation results between intentions and antecedent variables…………….. table : linear regression results for antecedent variables predicting intentions…….. table : logistic regression results for intentions predicting actual engagement…….. table : correlation results between depression and antecedent variables…………... table : moderator analysis results……………………………………………………... depression self-management ix list of figures figure : baldwin and ford ( ) model of educational knowledge transfer……….. figure : proposed hybrid model or knowledge translation, transfer and tpb………. figure : attrition diagram………………………………………………………………. figure : tbp antecedent variables composite scores…………………………………. figure : baseline attitude ratings………………………………………………………. figure : baseline subjective norms – significant others ratings……………………… figure : baseline subjective norms – physician ratings……………………………….. figure : baseline perceived behavioural control ratings………………………………. figure : baseline intentions ratings……………………………………………………... figure : frequency of participants attempting different strategies.………………….. figure : number of patient-initiated strategies attempted…………..………………… figure : social support tbp antecedent variables by level of depression…………... figure : exercise tbp antecedent variables by level of depression…………………. figure : time-group interaction attitudes composite ……...…………………………. figure : time-group interaction subjective norms – significant others composite…. figure : time-group interaction subjective norms – physician composite…………... figure : time-group interaction light therapy attitudes……………………………... figure : time-group interaction education attitudes………………………………….. figure : time-group interaction symptom monitoring attitudes……………………... figure : time-group interaction education subjective norm – significant other…….. figure : time-group interaction medication subjective norm – significant other…… figure : time-group interaction education subjective norm – physician…………….. figure : time-group interaction symptom monitoring subjective norm – physician... figure : time-group interaction pet therapy attitude………………………………… figure : time-group interaction pet therapy subjective norm – significant others…. figure : time-group interaction pet therapy subjective norm – physician………….. figure : time-group interaction bibliotherapy intentions…………………………….. figure : time-group interaction education intentions………………………………… depression self-management x abstract background: depression is a major health concern and self-management of depressive symptoms using patient-initiated strategies has the potential to reduce the burden of this condition. a better understanding of behaviour change related to these patient-initiated strategies is needed. method: this randomized controlled trial study used an online survey and knowledge translation and transfer theory-based educational intervention to examine the theory of planned behavior model in the context of nine patient-initiated strategies for the self- management of depression and low mood. results: perceived behavioural control was identified as the single greatest predictor of intentions to engage in strategies. attitudes predicted intentions to a lesser degree. subjective norms were not identified as unique predictors. theory of planned behavior antecedent variables together explained over one third of the variance in intentions. intentions to engage in patient-initiated strategies were shown, in some cases, to significantly predict actual engagement in strategies. level of depressive symptoms did not meaningfully impact any of the antecedent variables or intentions. results also suggest that an educational intervention based on knowledge translation and knowledge transfer principles significantly improved both attitudes and subjective norms – physician towards patient-initiated strategies. perceived behavioural control and intentions were not improved as a result of the educational intervention. theoretical conclusions: findings suggest that the theory of planned behavior functions well in the context of patient-initiated strategies for depression and low mood. perceived behavioural control was identified as the greatest predictor of intentions to engage in patient-initiated strategies. results also suggest mood difficulties are not captured by the model’s antecedent depression self-management xi variables but instead should be included as an additional variable in this model. the findings of the current study support an integrated model of knowledge translation and transfer and theory of planned behavior. practical conclusions: the current study’s findings provide a better understanding of behaviour change in the context of patient-initiated strategies and will help guide interventions aimed at improving engagement in these behaviours. findings also provide support and recommendations for the use of knowledge translation and transfer theory-based educational interventions to improve self-management of depression and low mood. depression self-management patient-initiated strategies for self-management of depression and low mood: understanding theory and changing behaviour introduction context depression has been identified by the world health organization as the single greatest cause of disease burden in the western world (world health organization, ). in primary care settings, where the majority of depression cases are managed (griffiths & christensen, ), less than half of patients experiencing clinically significant levels of depressive symptoms are identified by general practitioners as having major depressive disorder (mitchell, vaze, & rao, ) and less than % of identified cases are provided with appropriate treatment (craven & bland, ; pence, o’donnell, & gaynes, ). various systemic limitations explain these oversights but they are ultimately due to the overburdening of the primary care system (margolius & bodenheimer, ). patient self-management of depressive symptoms using empirically-based, patient-initiated strategies (jorm, christensen, griffiths, & rodgers, ), is an integral, cost effective component of successful stepped-care models (richards, ) and a potential solution to the growing problem of depression in canada. the challenge lies in understanding patients’ attitudes and beliefs towards patient-initiated strategies and developing interventions that most effectively improve behavioural intentions and actual engagement in self-management of depressive symptoms. using the theory of planned behavior (tpb; ajzen, ), the current study aims to understand patient attitudes and beliefs towards nine patient-initiated strategies and the effect of a knowledge translation and knowledge transfer theory-based educational intervention. depression self-management background depression depression is a major health concern responsible for widespread impairment and diminished quality of life (kessler, merikangas, & wang, ). characterized principally by depressed mood and loss of interest in previously enjoyed activities, major depressive episodes can also include problematic changes in appetite and weight, increased fatigue, disrupted sleep routines, difficulties with concentration, physical agitation or slowed psychomotor functioning, feelings of worthlessness or guilt, and suicidal ideation or behaviour (apa, ). major depressive episodes of moderate to severe intensity range from five to nine months in duration with more mild presentations generally enduring for longer periods (furukawa, konno, morinobu, harai, kitamura, & takahashi, ). of those experiencing clinically significant severity of depressive symptoms, % are described as “severely depressed” and typically endorse most of the dsm-iv-tr criterion (carragher, adamson, bunting, & mccann, ). thirty-one percent of depressed individuals are described as “psychosomatic” and are most likely to endorse appetite and sleep disturbances as well as impaired concentration. the remainder are identified as “cognitive-emotional” ( . %), exhibiting symptoms related to worthlessness, guilt, impaired concentration, and suicidality, or “non-depressed” ( . %), endorsing few dsm-iv-tr symptoms (carragher et al., ). estimates of lifetime prevalence rates are . % in canada (patten et al., ) and . % in the united states (kessler et al., ) with a recent meta-analysis of depression epidemiology worldwide (ferrari et al., ) suggesting increasing rates of prevalence in most western countries. one-year incidence of depression in canada was estimated at . % with cumulative incidence in years two and three estimated at . % and . %, respectively (wang, depression self-management williams, lavorato, schmitz, dewa, & patten, ). according to the global burden of disease, injuries, and risk factors study (murray & lopez, ), depression in accounted for . % of disability-adjusted life years (dalys), a measure incorporating the number of years of life lost due to premature death and the number of years lived with a disability. in , the burden of depression had increased to account for . % of dalys making it the third greatest contributor to burden and the leading cause of disability (Üstün , ayuso-mateos, chatterji, mathers, & murray, ). a later analysis by the world health organization suggests that depression is now the leading cause of burden in the western world (world health organization, ). depression in isolation has proven to be a significant health concern but its common comorbidity with other medical and psychological conditions produces compounding effects in many areas of health. ninety three percent of individuals with depression have at least one comorbid medical or psychological condition with the average depressed individual experiencing four other conditions (gadermann, alonso, vilagut, zaslavsky, & kessler, ). the canadian network for mood and anxiety strategies (canmat) identified several common comorbid physical conditions, including cardiovascular disease, cerebrovascular disease, cancer, human immunodeficiency virus, hepatitis c virus, migraine, multiple sclerosis, epilepsy, and osteoporosis, all of which are adversely affected by depressive symptoms. rates of depression comorbidity range from % and % in cardiovascular disease (thombs et al., ; thombs et al., ) and cancer (pirl, ), respectively, to as much as % and % in migraines (breslau, lipton, stewart, schultz, & welch, ) and multiple sclerosis (skokou, soubasi, & gourzis, ), respectively. if untreated, co-occurring depression in these medical conditions can significantly compromise prognoses and even increase the likelihood of death (canmat, depression self-management ). a high rate of comorbidity is also observed between depression and other mental illnesses (rohde, lewinsohn, & seeley, ). for example, % of individuals with anxiety also have depression (lamers et al., ), half of those diagnosed with schizophrenia have co-occurring depressive symptoms (buckley, miller, lehrer, & castle, ), and over % of individuals with substance abuse also have a diagnosis of major depressive disorder (cerda, sagdeo, & galea, ). depression experienced on its own or coupled with medical and other psychological conditions is a significant and mounting health care concern (Üstün et al., ) requiring effective, evidence-based treatment at all levels of health care (e.g., kennedy, lam, cohen, ravindran, et al., ; segal, whitney, raymond, et al., ). current treatments of depression not only reduce depressive symptoms (e.g., forman, shaw, goetter, herbert, & park, ), they have also been shown to improve clinical outcomes of co-occurring medical and psychological conditions including, for example, cancer (miovic & block, ; reich, lesur, & perdrizet-chevallier, ; sheard & maguire, ), diabetes (katon et al., ; lustman & clouse, ), cardiovascular disease (rudisch & nemeroff, ; thombs et al., ), schizophrenia (e.g., siris, bermanzohn, mason, & shuwall, ) and substance abuse (e.g., watkins, hunter, hepner, paddock, zhou, & cruz, ). the literature underscores the importance of addressing depressive symptoms not only for the burden it causes on its own, but also for its impact on other physical conditions. it is imperative, therefore, that depression be managed effectively. depression treatment in primary care given the magnitude of depression’s impact, both in terms of the number of individuals affected by the condition and the wide variety of other medical and psychological conditions depression self-management affected by it, it is not surprising that depression is most often diagnosed and managed in primary care, the front line of the health care system (griffiths & christensen, ). it is estimated that % of all mental illness is treated by primary care providers (reiger, goldberg, & taube, ). forty-two percent of all primary care patients present with some form of mental illness (ansseau et al., ) and up to % of all patients present with clinically significant depressive symptoms (zung, broadhead, & roth, ). major depressive disorder is found in to % of primary care patients (katon & schulberg, ) and nearly % of all visits to a primary care physician are depression related (stafford, ausiello, misra, & saglam, ). already overburdened (margolius & bodenheimer, ), primary care physicians face the daunting task of managing the vast majority of depression cases. with an average of . minutes engaged in face-to-face interactions with each patient (gottschalk & flocke, ), other time constraints, minimal knowledge of mental health issues, and limited opportunities for continuing education in diagnosis and treatment of mental health conditions (e.g., brown & wissow, ), primary care physicians are systematically handicapped in their ability to effectively detect (simon & vonkorff, ; williams et al., ) and manage (kendrick, ) depression in their patients. pharmacotherapy remains the most commonly prescribed treatment by primary care physicians for depression (stafford et al., ) despite the demonstrated effectiveness and recommendation of other interventions (e.g., national collaborating centre for mental health [nccmh], ). due to the many pressures placed on primary care physicians, prescribed treatments, even pharmacological treatments, often deviate considerably from clinical practice guidelines (cpgs) regarding the effective treatment of depression (pincus et al., ; seelig & katon, ). psychotherapy, psychoeducation and other patient-initiated strategies (e.g., depression self-management exercise, bibliotherapy) are rarely prescribed despite convincing evidence of their effectiveness (e.g., jorm, christensen, griffiths, & rodgers, ). clinical care gaps (davis et al., ), discrepancies between evidence-based best practices and actual practice, such as those demonstrated here can result in suboptimal care (hepner, ; huttin, ), inefficiency, and excessive expenditures in the health care system (e.g., o’brien, jacobs, & pierce, ). providing care outside current practice guidelines also increases risk of litigation for malpractice (larkin et al., ). while the burden of depression on the primary care system is immense (Üstün et al., ), poor management of depressive symptoms through the underutilization of all available evidence-based treatments only serves to increase that burden of depression on the system. since the burden of depression appears to exceed the capacity of the primary care system to manage it, a fundamental shift in the responsibility of depressive symptom management must occur. in the same way that public health campaigns have placed the onus of weight management and the management of symptoms related to common illnesses like the flu on patients themselves (e.g., curry, sung, arroll, goodyear-smith, kerse, & norris, ; katz et al., ), a shift towards the self-management of depressive symptoms provides a partial solution to the problem of depression in primary care. public health campaigns, addressing both prevention and management of symptoms in common physical illnesses, have resulted in a decrease in the utilization of health services (e.g., grilli, ramsay, & minozzi, ). it stands to reason, therefore, that a systemic effort to improve patient self-management of depressive symptoms is likely to reduce the burden of depression on the primary care system by reducing the usage of these services by depressed patients. stepped-care models offer an established framework on which to build capacity among patients to manage their depressive symptoms. depression self-management stepped-care models stepped-care is a health care model that was developed with the view of reducing the burden of mental illness management on primary care (richards, ). bower and gilbody ( ) describe stepped care as having two key features: “prescribing least restrictive” treatments and “self-correcting” (bower & gilbody, , pp. ). treatments applied within a stepped-care approach are the “least restrictive” of those available in that they are the least costly to patients, monetarily and time-wise, and to specialists’ time commitments while still providing effective treatment for the severity of mental illness presented. if the level of treatment is inadequate, systematic monitoring of symptoms permits self-correcting, or the ability of the system to increase the intensity of the treatment as required (bower & gilbody, ). in the context of primary care, the function of this model permits the continued referrals of severe cases of mental illness to tertiary services or specialists (e.g., psychiatry, psychology) while relieving primary care physicians of more mild cases of mental illness. mild cases are directed to access community resources (e.g., social work, counsellors). this leaves moderately severe cases of mental illness for primary care physicians to manage, which, in the case of depression, is the level of severity most appropriate for and well managed by primary care physicians (e.g., mcpherson & armstrong, ). stepped-care incorporates all levels of intervention in an effort to minimize the burden of mental health on the health care system (franx, oud, de lange, wensing, & grol, ). arguments for implementing stepped-care in canada tout the model’s more consistent application of low burden treatments such as patient-initiated strategies (i.e., self-management; patten, bilsker, & goldner, ). before stepped care can be introduced to the current system, however, a greater understanding of behaviour change in the context of these self-management strategies is necessary. depression self-management patient-initiated strategies for depression and low mood clinical practice guidelines for the management of various mental health conditions consistently recommend the use of patient-initiated strategies for self-management (e.g., nccmh, ; nccmh, ; new zealand guidelines group, ). practice guidelines for depression also recommend patient-initiated strategies of which there are a number of evidence- based options (jorm, christensen, griffiths, parslow, rodgers & blewitt, ). bibliotherapy (e.g., naylor et al., ), exercise (e.g., knubben, reischies, adli, schlattmann, bauer, & dimeo, ), light therapy (martiny, lunde, unden, dam, & bech, ), social support (grav, hellzen, romlid, & stordal, ), and monitoring of depressive symptoms (katon et al., ) are all established evidence-based, patient-initiated strategies for depression and low mood. used independently or adjunct to practitioner-led interventions, patient-initiated strategies have been shown to be effective in significantly reducing depressive symptoms in a variety of contexts (jorm et al., ). bibliotherapy. reading a self-help book (i.e., bibliotherapy) for depression has been shown to significantly improve mood. in a primary care study, patients were each assigned to one of two groups (naylor, ). the first group received treatment as usual from their physician (i.e., antidepressant medication). the second group was asked to read the self-help book feeling good: the new mood therapy by dr. david burns. both groups improved equally well and those who read the book improved without pharmacological intervention (naylor, ). self-help books present information related to cognitive-behavioural therapy in an easily understood format. they provide information about depression and help individuals understand that they are not alone in their struggle with low mood. the use of self-help books is recommended by the canadian psychiatric association (cpa, ). depression self-management exercise. regular physical exercise has been shown to decrease depressive symptoms. in a study with depressed patients, half of the participants were placed in a group that completed minutes of walking each day for a period of days. the second group completed minutes of relaxation exercises for the same period. three times more patients in the walking group had significant improvement in their mood than did patients in the relaxation group (knubben et al., ). there are many ways that exercise improves mood. exercise releases chemicals in the brain that in turn trigger locations in the brain associated with good mood. exercise improves body image and physical health, which improves self-esteem and mood. exercise is a great stress reliever and less stress means improved mood. the canadian network for mood and anxiety treatment (canmat, ) and the canadian psychiatric association (cpa, ) both recommend exercise as treatment for depression. light therapy. regular exposure to full-spectrum light (i.e., light from the sun or a "light therapy" lamp) has been demonstrated to improve mood and functioning. one study placed patients with non-seasonal depression into two groups (martiny, ). one group received one hour of bright light each morning for five weeks. the other group received one hour of low light each morning. the bright light group had significantly improved mood following the study (martiny, ). natural light and light from light-therapy works in two ways to improve mood. first, it increases the amount of neurotransmitters (brain chemicals) associated with heightened mood (e.g., serotonin, dopamine). second, when timed appropriately, every morning for example, light therapy helps synchronize the body’s circadian rhythm with the sleep-wake cycle. the canadian network for mood and anxiety treatment (canmat, ) recommends light therapy for people who experience depression primarily in the winter months. the american psychiatric association also recommends light therapy for nonseasonal depression (apa, ). depression self-management psychoeducation. educating patients about the nature, causes, and treatment of depression, even if done briefly and passively, has been demonstrated to significantly reduce depressive symptoms (e.g., donker, griffiths, cuijpers, & christensen, ). psychoeducation can be a considered a patient-initiated strategy if patients are provided with educational material to read (e.g., christensen, griffiths, & jorm, ) or are directed to seek out information on their own. in one study, individuals with depression were asked to read a webpage that provided information about depression. those individuals who learned more about depression saw a significant reduction in depressive symptoms. furthermore, people who learned more about depression were more likely to make recoveries than those who had learned less (christensen, griffiths, & jorm, ). knowing more about low mood and depression can help one identify their symptoms more readily and allow them to apply other patient-initiated strategies or seek professional help sooner. many organizations recommend education for people experiencing depression or low mood including the college of family physicians of canada (cfpc, ) and the canadian network for mood and anxiety treatment (canmat, ). socializing. maintaining healthy relationships with friends and family and starting new relationships can be a great way to improve mood. in a study of over , norwegians, researchers found that regardless of age or gender, those individuals with greater social support had more positive moods (grav, hellzen, romild, & stordal ). social support in this study included emotional support or more tangible sources of support (e.g., help at home). when experiencing low mood some people isolate themselves and remove themselves from the company of others. this only serves to worsen one’s mood with feelings of loneliness or rejection. visiting with friends to do something enjoyable, even if one does not feel inclined to do so, has been demonstrated to improve one’s mood. in their clinical practice guidelines for the depression self-management treatment of depression, the college of family physicians of canada (cfpc, ) and the national collaborating centre for mental health - national institute for health and clinical excellence (nice, ) both recommend increased social support and social activities to help improve mood. symptom monitoring. monitoring and being aware of one’s depressive symptoms can actually help improve mood. in a study of depressed patients who were prescribed antidepressant medication by the physician, those that took part in a relapse prevention program that included routine monitoring of depressive symptoms saw a greater increase in mood than those who did not monitor symptoms. those patients who monitored their symptoms were also more likely to follow their physician’s directions for treatment (katon et al., ). regularly monitoring symptoms of low mood or depression can help one recognize when they have made improvements and help identify strategies or experiences that have helped improve their mood. monitoring symptoms can also help one recognize when their mood is deteriorating, allowing them to intervene sooner. the national institute for health and clinical excellence (nice, ) recommends symptom monitoring in its latest clinical practice guidelines for the treatment of depression and low mood. other patient-initiated strategies. the stepped-care model has yet to be established in the canadian health care system (patten et al., ) and while the current system already contains the mechanisms for specialist referrals, a stepped-care model would serve to systematize this process and increase efficiency (scogin et al., ). until such a time that these referral mechanisms are more efficient, patients themselves must monitor and adhere to prescribed treatments on their own and seek out specialized services, like psychotherapy. in this way, routine adherence to medication prescriptions (katon et al., ) as well as actively depression self-management seeking psychotherapy or counselling services (e.g., fava, rafanelli, grandi, conti, & belluardo, ) can also be considered patient-initiated strategies. adhering to prescribed medications. taking prescribed medication regularly as directed can significantly improve mood. in a study published in the journal of the american medical association, it was discovered that the patients who took their antidepressant medication regularly were % more likely to feel that the medication helped improve their mood than those who did not take their medication regularly. seventy-five percent of individuals who took their medication regularly had a % or greater reduction in their depressive symptoms. less than half of those who did not take their medication regularly saw an increase in mood (katon et al., ). some of the most common medications prescribed for low mood and depression require time for the drug to build up in the body before it has the desired effect. taking medication regularly allows the drug to function the way it is intended. following prescription directions for taking medication is, therefore, important. all professional healthcare organizations recommend taking medications as prescribed including the canadian medical association and the canadian psychiatric association (cpa, ). seeking psychotherapy services. psychotherapy is considered to be one of the most effective treatments for depression and low mood. cognitive behaviour therapy (cbt) is widely considered to be a first-line psychological treatment for depression. in one study, primary care patients with depression were randomly assigned to one of two groups (fava, rafanelli, grandi, conti, & belluardo, ). the first group received cbt from a qualified mental health professional in addition to care as usual from their physician. the second group simply received care as usual from their physician. in addition to showing a greater reduction in depressive symptoms, the patients that received cbt were also more likely to be in remission and depression self-management medication free two years after completing psychotherapy. patients who did not complete cbt were four times more likely to relapse (beck, ; fava et al., ). through weekly -hour sessions with a qualified professional, cbt teaches skills that help one change their behaviour and the way they think. cbt has been shown to actually change the way parts of the brain function meaning the effects of cbt last long after psychotherapy has finished. the canadian network for mood and anxiety treatment (canmat, ) recommends psychotherapy for depression as does the canadian psychiatric association (cpa, ). patient-initiated strategies in stepped-care models in stepped-care models, patient-initiated strategies represent the lowest burden interventions with patients themselves administering treatment (scogin, hanson, & welsh, ). bibliotherapy, exercise, light therapy, social support, symptom monitoring, psychoeducation, adhering to medication prescriptions and seeking psychotherapy or counselling services are examples of the most effective patient-initiated strategies for depression. these evidence-based strategies have the capacity to reduce the burden of depression on the primary care system and lessen the burden of depression itself on patients. although patient-initiated strategies have been shown to be effective (e.g., jorm et al., ), they are the most underused treatments in the management of depression (e.g., taylor et al., ; wang, berglund, & kessler, ). while usage rates for each individual patient- initiated strategy are not known, given the increasing prevalence of depression worldwide it is reasonable to assume that these strategies are not being employed effectively in the general population. patients in primary care settings are rarely given information regarding evidence- based, patient-initiated strategies and are infrequently educated about depression. primary care physicians neither have adequate time nor sufficient knowledge to effectively communicate the depression self-management nature and benefits of patient-initiated strategies for depression and low mood to their patients (e.g., scogin, hanson, & welsh, ). this breakdown in the passage of useful, evidence-based knowledge to the providers of patient-initiated care, the patients themselves, is the result of an overburdened primary care system. the information exists, the providers exist, and the recipients exist. facilitating the communication of information regarding patient-initiated strategies for depression between researchers and patients themselves is the challenge presented. an educational intervention aimed at improving the understanding of patient-initiated strategies among patients themselves appears to be a potential solution to this knowledge gap, and improved knowledge about patient-initiated strategies for depression and low mood is part of the solution to increasing engagement in these behaviours. theoretical background low usage rates of patient-initiated strategies for depression and low mood suggest some impediment in the behaviour change process (i.e., from acknowledgement of mood difficulty to engagement in patient-initiated strategies). given that primary care practitioners rarely educate patients with regard to depression in general and self-management through patient-initiated strategies, it appears that a lack of knowledge regarding these strategies may contribute to the low use of these strategies. efforts to improve usage of these strategies must, therefore, include a better understanding of the passage of information from physicians, or other sources, to patients. k*, knowledge translation, and knowledge transfer theory offers that important perspective. knowledge translation and knowledge transfer educational interventions. a significant empirical base supporting the use of patient- initiated strategies for depression exists in the scientific literature (e.g., jorm et al., ). as depression self-management indicated previously, low usage rates of these strategies among patients likely stems from a lack of knowledge regarding the benefits of applying these strategies in the context of depression and low mood. it follows logically that educational interventions are an appropriate approach to remedy this gap in knowledge. educational interventions have been found to be effective in improving clinician adherence to evidence-based practices in a number of different settings (e.g., parrish & rubin, ; shirazi et al., ; varnell, haas, duke, & hudson, ). the same types of educational interventions may also be effective in improving patient adherence to patient-initiated strategies for depression and low mood. in the case of evidence-based information, educational interventions are optimally applied using k* mechanisms. definition of k*. the study and application of passing knowledge from one entity to another is a field that is relevant to many different disciplines and in many different contexts. as a result, this field of study is particularly diverse with different disciplines using different terminology to refer to different concepts. in an effort to consolidate the field, numerous organizations have attempted to establish common definitions for terminology. the united nations university institute for water, environment, and health (shaxson et al., ), in collaboration with other organizations, coined the term k* as a collective label for all concepts related to the study and application of knowledge passage. simply put, k* encompasses all the mechanisms by which one individual or organization is influenced by the experience of another individual or organization (argote & ingram, ). k* is often bi-directional. information not only flows from researchers (typically knowledge sources) to decision makers (typically knowledge recipients), but also from decision makers to researchers, a process that helps form new research questions, new investigations and new information (e.g., keifer et al., ). in the context of health care, k* has principally been used depression self-management to investigate the manner in which evidence-based, best care practices are communicated from health researchers to practitioners (mitton et al., ). k*, health related and otherwise, also includes concepts related to the exchange of information between researchers and policy makers (e.g., jones, datta, & jones, ), however, these concepts have little relevance in the current study and will not be discussed further here. in a recent review of the different k* models currently described in the literature, davison and the national collaborating centre for determinants of health (nccdh; ) identified different k* models. it is apparent from an independent review of the literature that the field is considerably disunited, with many terms being used to encompass all aspects of k*. in an effort to remedy this problem, shaxson and colleagues ( ) undertook a thorough examination of the different terminology currently used and provided helpful definitions for each. relevant to the issue of evidence-based educational interventions for patients, knowledge translation and knowledge transfer appear to be the most appropriate and useful terms. concepts and definitions associated with each of these terms vary widely from discipline to discipline as well as between researchers and decision makers within disciplines. for the purposes of the current study, the term descriptions below will be used. knowledge translation. knowledge translation refers specifically to the “process of translating knowledge from one format to another so that the receiver can understand it” (shaxson et al., , pp. ). in this way, knowledge translation represents the first step in conveying knowledge derived from scientific investigation to patients. rooted in the fields of applied linguistics and communication, knowledge translation involves a number of different processes including consolidation of research findings, increasing awareness among knowledge recipients, creation of messages that result in action, and the adaptation of research findings to depression self-management address the specific needs of knowledge recipients (ottoson, ). in a word, knowledge translation refers most specifically to the “what” of k*, that is what knowledge is to be transferred, implemented, or utilized. while the function that knowledge translation holds in k* is seen by some to be a recurring process with a feedback loop that continuously informs future knowledge translation activities (ottoson, ), it is viewed by others as a simple two step, unidirectional process (hiss, ). as applied in the context of health related behaviours, hiss ( ) argues that knowledge translation begins first with the translation of scientific discoveries into practices that can be applied at the point of care. second, hiss ( ) suggests, knowledge translation seeks to have these scientifically informed practices adopted by practitioners or patients in real-world circumstances. it seems, however, that hiss’ ( ) second phase of translation enters into the realm of knowledge transfer (shaxson et al., ). as ottoson points out, “[adoption and application of knowledge] is not a key determinant of translation success” (ottoson, , pp. ). knowledge transfer. knowledge transfer is defined by shaxson and colleagues as “a one-way process of sharing knowledge which can be construed as more of a teacher-student relationship than other knowledge-related activities” (shaxson et al., , pp. ). in addition to considering the nature of the information to be transferred, knowledge transfer addresses the context of knowledge providers and knowledge recipients as well as the mechanisms by which information is transferred (ottoson, ). baldwin and ford ( ) offer a proposed model of knowledge transfer in the context of education. figure is a graphical representation of this model. in this model, training design (i.e., mechanism of knowledge transfer), trainee characteristics (i.e., knowledge recipient characteristics), and work environment (i.e., context of location where learning occurs) are all considered training inputs. each of these inputs is depression self-management believed to have a direct impact on learning and retention of the information itself. learning and retention then has an effect on the application of knowledge in behaviour. baldwin and ford ( ) hypothesize that both the context in which learning occurs (work environment) and the characteristics of the knowledge recipients (trainee characteristics) have the potential to influence the application of knowledge directly. the baldwin and ford ( ) model of knowledge transfer provides a helpful framework to better understand the process of educating patients with evidence-based information. while knowledge transfer and knowledge translation both give consideration to the type of information being transferred, it is the expressed purpose of the latter concept and, therefore, matters related to the formation of the message in the current study will be considered knowledge translation. figure . diagram of baldwin and ford’s ( ) model of educational knowledge transfer. depression self-management knowledge translation and knowledge transfer integrated. although no unified theory of k* has been developed (mitton et al., ), lavis, robertson, woodside, mcleod and abelson ( ) outline five key, commonly accepted elements of k* framework relevant to educational interventions for patients: the message, the audience, the messenger, the mechanism, and the evaluation of the effect of the passage of information. most of these elements fit with the current study’s understanding of knowledge translation and knowledge transfer. when applying this common understanding of k* along with the specific theoretical concepts related to knowledge translation and knowledge transfer, the audience (trainees, knowledge recipients) of an educational intervention focussed on patient-initiated strategies for depression and low mood are viewed as the patients themselves. relevant characteristics of the audience in this context include their lay knowledge of evidence-based information and scientific investigation, depressive symptoms, and a moderate level of motivation to learn about the subject matter. the messenger and the mechanism, as described by lavis and colleagues ( ), appear to fit within baldwin and ford’s ( ) concept of the mechanism in knowledge translation. health care providers, and primary care physicians specifically, are the intended messengers in the primary health care system for information related to depression and patient-initiated strategies for depression (e.g., jorm et al., ). the messenger of an educational intervention of this nature may also include the researchers themselves, as in the current study, or others through public health campaigns and human resource initiatives. given the audience and the magnitude of the problem posed by depression and low mood, a messenger with sufficient authority and an ability to connect with a large number of people would provide the greatest impact. the mechanism for the transfer of this information can take many forms including in- person training, presentations, and publications. in the context of mental health, the use of depression self-management internet-based resources (e.g., websites, downloadable material) has been demonstrated to be effective in communicating reliable information (e.g., zermatten, khazaal, coquard, chatton, & bondolfi, ) and is often the preferred mechanism of knowledge transfer (reynolds, ). using an internet-based mechanism for the knowledge transfer of evidence-based information related to patient-initiated strategies for depression is, therefore, suitable. ideally, an internet- based educational intervention would present information in multiple modalities including visually, with videos or in-person presentations, and in text with written materials (ginns, ). information would also be presented to the audience on multiple occasions and would be readily accessible to audience members at any time. while the audience, the messenger, and the mechanism are self-evident, determining the message to be transferred requires particularly careful consideration if it is to have the desired effect. this is the jurisdiction of knowledge translation theory. firstly, the information in any educational intervention must be captured in a simple, easily understood package (e.g., mitton et al., ). this point is doubly important in the context of presenting scientifically derived information to patients who, in general, have a lay understanding of scientific methods and concepts. a synthesis of various research findings into a message that can be acted upon is required (ottoson, ). specifically, the message must include evidence-based information regarding the “what”, “where”, “why”, “how”, and “who” relevant to specific behaviour or practice, which are the patient-initiated strategies in the case of the current study (ebener et al., ). for example, the information contained in the message for a particular patient-initiated strategy might include an adequate description of the strategy (i.e., what), the scientific evidence that demonstrates the strategy’s efficacy in reducing depressive symptoms (i.e., where), the scientifically supported mechanisms for the strategy’s demonstrated efficacy (i.e., why), depression self-management evidence-based recommendations on applying the strategy in day-to-day life (i.e., how), and which professional organizations recommend the use of the strategy for reducing depressive symptoms (i.e., who). in the case of patient-initiated strategies for depression, a properly structured message with an appropriate mechanism is ultimately meant to increase a patient’s frequency of engagement in a particular strategy (e.g., exercise); however, as is observed in other k* literature, successful passage of information does not reliably change behaviour in the recipients of knowledge (e.g., dobbins, ciliska, cockerill, barnsley, & dicenso, ). in baldwin and ford’s ( ) model, knowledge successfully transferred (i.e., learned and retained) is shown to influence “generalization” and “maintenance” but behaviour change itself is not directly addressed. k* theory examines the nature of the passage of information, the push and pull of knowledge, from one entity to another (mitton et al., ). k* theory implicitly assumes that knowledge received is immediately acquired and applied resulting in direct behavioural change. although knowledge recipients in industry may be influenced by external motivators to change behaviour, for example corporate policy or the incentive of greater profits (argote & ingram, ), real attitude and behavioural change are known to be influenced by internal motivators (e.g., miller & rollnick, ). in health care k*, decision-makers are more likely to rely on their own experiences with, and opinions on, various practices in deciding whether or not to apply evidence-based information to their own behaviour (e.g., bohannon & leveau, ; luker & kendrick, ). efforts to change health related behaviour through k*, and specifically in the context of information regarding patient-initiated strategies for depression and low mood, therefore, require an additional theoretical framework that focuses explicitly on behaviour change. depression self-management the theory of planned behavior the theory of planned behavior (tpb; ajzen, ) was developed as a means of better understanding the factors associated with engagement in behaviour. unlike the transtheoretical model of behaviour change (prochaska & diclemente, ) and other multi-stage models of behaviour change (see armitage & conner, for a review), which emphasize different aspects of behaviour change based on specific stages of readiness to change, tpb is applicable to persons at all stages of readiness to change. as such, tpb is more easily applied to generic educational interventions like those based on knowledge transfer and knowledge translation theory. furthermore, tpb provides a common set of variables through which the impact of an educational intervention on behaviour change can be examined in this and other contexts. finally, while tpb does not elaborate on the concept of intentions like behavioural enaction models (e.g., gollwitzer, ; bagozzi, ), its extensive use in the context of behaviour change for other health behaviours (armitage & conner, ) permits investigations using this model to be more easily compared to other health behaviours and situated in the current literature. history of the concept. behaviour change has long been an interest of social and personality psychologists alike (sherman & fazio, ). the study of behaviour change began primarily with investigations into concepts related to behavioural dispositions (ajzen, ; campbell, ). social attitude and personality trait in particular were both identified as early elements of behavioural dispositions. attitudes, defined as “evaluative feelings of pro or con, favourable or unfavourable, with regard to an object” (insko & scholper, , pp. - as cited by wicker, ), were originally investigated in relation to specific behaviours under specific circumstances. furthermore, the methodology used to measure attitudes were often depression self-management verbal and in many cases themselves introduced a wide variety of other factors, including, for example, affect, beliefs, and other behavioural dispositions (wicker, ). the results of these studies, unsurprisingly, revealed a great deal of “attitude-behaviour inconsistency” and considerable scepticism towards attitude as a determinant of overt behaviour. this early research suggested that attitude towards a behaviour was but one element of an individual’s dispositions towards a particular behaviour (wicker, ). the second popularly theorized determinant of behaviour in early investigations was personality trait (ajzen, ). this research aimed to demonstrate the association between various personality traits and behaviour (mischel, ). it was observed, however, that any significant consistencies between traits and behaviour were highly specific, not generalizable, and better explained by the situational circumstances of the behaviour. furthermore, as was observed in the case of early attitude investigations, the measurement methodology for personality traits and behaviour often confounded results (mischel, ). weak correlations in other studies, once thought to be due to methodological issues, were viewed by some as disproof of the association between personality traits and behaviours. ajzen ( ) explains that while many considered personality traits to no longer be an element of behavioural dispositions, others continued the pursuit of this association. both in the case of attitudes and personality traits, investigators turned to aggregation as a means of creating more generalizable results (epstein, ). aggregation refers to the act of removing the specificity of a particular behaviour by gathering related behaviours across occasions and situations and analyzing associations for these behaviours together. as a result, attitudes and personality traits were observed to influence behaviours at a general level (ajzen, ). while beneficial for a general understanding of behavioural disposition, the principle of depression self-management aggregation applied here does not provide clarity regarding individual factors that influence behaviours in specific circumstances. this gap in knowledge led to the development of the theory of reasoned action (ajzen & fishbein, ). theory of reasoned action. pulling primarily from social psychology, ajzen and fishbein ( ) developed the theory of reasoned action (ajzen & fishbein, ) as a model of behaviour disposition. as part of this theory, the authors hypothesized that intentions to engage in a behaviour served as an intermediary between antecedent variables and the behaviour itself. intentions were believed to be the “immediate determinant” of a behaviour (ajzen & fishbein, ). ajzen would later explain that intentions are intended to “capture the motivational factors that influence a behavior” (ajzen, , pp. ). numerous studies since the concept of intentions was first introduced have demonstrated the causal relationship between intentions and behaviour (e.g., webb & sheeran, ). indeed, the introduction of intentions represented a significant step in the field of behaviour disposition and behaviour change theory. ajzen and fishbein’s ( ) theory of reasoned action also postulated that attitude and subjective norms comprised the antecedent factors that lead to intentions to engage in a specific behaviour. in their theory, attitudes are described as a function of one’s belief regarding the consequences of engaging or not engaging in a particular behaviour and the evaluation of those consequences. subjective norms are identified as a function of one’s assessment of whether others important to that individual approve or disapprove of their engagement in a particular behaviour and the degree to which individual is inclined to be influenced by what those important others wish for them. in brief, the theory of reasoned action suggests that attitudes and subjective norms together determine intentions, which in turn determines engagement in behaviour. at the time of its conception, this theory was believed to “explain virtually any depression self-management human behaviour” (ajzen & fishbein, ); however, it did not take long for criticism to befall this new theory. in his critical assessment of the theory of reasoned action, sarver ( ) pointed out that ajzen and fishbein’s ( ) theory failed to consider what he termed the context of opportunity. in essence, sarver argued that although an individual’s beliefs may have lead to a positive attitude towards a particular behaviour and they may also believe that important and influential others approve of their engagement in that same behaviour, circumstances beyond their control may prevent them from engaging in the behaviour despite their best intentions. in this way, sarver explained that the causal nature of the theory of reasoned action breaks down and intentions fail to predict actual engagement in a behaviour. while ajzen and fishbein ( ) acknowledged this in a cursory manner in the theory of reasoned action referring to “idiosyncratic events”, sarver ( ) suggested that context of opportunity should be elevated to a systematic consideration in the model. others in the field echoed this concern (e.g., liska, ; kuhl, ). sarver ( ) also voiced some reservation regarding the object of the theory of reasoned action, that being the behaviour itself. sarver argued that an individual not only has beliefs about a behaviour, but also the context in which that behaviour occurs. therefore, according to sarver ( ), the object of the causal nature of the theory is not the actual behaviour but instead an anticipated behaviour. furthermore, an individual’s belief regarding the context of a particular behaviour has the potential to change over time thus causing additional complications. in effect, beliefs about the context in which a behaviour occurs have the potential to influence whether or not an individual actually engages in that behaviour. for these reasons, sarver rejected the causal nature of ajzen and fishbein’s ( ) theory. while some of the depression self-management sarver’s ( ) and other’s concerns regarding the theory of reasoned action were later addressed, the problems around anticipated behaviour were not. theory of planned behavior. to address the issue of context of opportunity, ajzen ( ) revised the theory of reasoned action to include a variable that captured the resources and opportunities available and required by an individual to engage in a behaviour. drawing on bandura’s work, ajzen applied the concept of perceived self-efficacy in creating “perceived behavioural control” as a third antecedent variable. together with the variables from the original theory of reasoned action, ajzen ( ) began to develop the theory of planned behaviour (tpb). like its predecessor, tpb (ajzen, ) proposes that an individual’s intention to engage in a particular behaviour is the main determinant in the behaviour exhibited by that individual. the theory incorporates three factors that are said to impact intentions to engage in a behaviour: ) attitudes, a function of one’s belief regarding the consequences of engaging or not engaging in a particular behaviour and the evaluation of those consequences, ) subjective norms, a function of one’s assessment of whether important others approve or disapprove of their engagement in a particular behaviour and the degree to which the individual is inclined to be influenced by what those important others wish of them, and ) perceived control over the behaviour. the three antecedent variables are said to influence each other as well as influence intentions. ajzen ( ) elaborates on the concept of perceived behavioural control linking it to the construct of self-efficacy and its impact on such factors as activity preparation, amount of effort expended during engagement, and cognitive and emotional reactions. the positive impact that self-efficacy (i.e., perceived behavioural control) made on ajzen’s behaviour change model made it an important addition to ajzen’s ( ) theory of behaviour change. in addition to having an effect on intentions, perceived behavioural control has also been demonstrated to depression self-management directly impact actual engagement (ajzen, ; terry & o’leary, ). to clarify, ajzen ( ) explains that perceived behavioural control becomes a relevant predictor of intentions only if an individual does not have complete volitional control over the behaviour in question. according to ajzen, if an individual is completely capable of engaging in a particular behaviour, intention, as influenced by attitudes and subjective norms, is the greatest predictor of actual engagement. when an individual does not have complete volitional control over a behaviour, intentions and perceived behavioural control together become predictors of actual engagement in the behaviour (ajzen, ). criticisms of the theory of planned behavior. as with the theory of reasoned action, tpb received criticism (ajzen, ). while the theory appears to work well under many circumstances with high correlations between antecedent variables and intentions and between intentions and behaviour engagement observed, the intentions-behaviour correlation is occasionally poor. ajzen ( ) points to the example of a study in which tpb variables were investigated in relation to sleep hygiene behaviours (kor, & mullan, ). the results of the study suggested that intentions only weakly predicted actual engagement in sleep hygiene behaviours. ajzen ( ) explains that in the case of some behaviours, actual control over a behaviour is a more accurate predictor of engagement in the behaviour than perceived behavioural control. in the example of the sleep hygiene study, azjen suggests difficulties self- regulating and an inability to avoid distressing thoughts or anxiety prevented individuals in the study from truly being in control of their sleep hygiene behaviour, even though their perceived behaviour control for those behaviours may have been high (ajzen, ; kor * mullan, ). a low intention-behaviour correlation is a problem and “a warning that we may be reaching the limits of reasoned action” (ajzen, , pp. ). depression self-management from the earliest conceptualizations of behaviour change theory, affect was identified as a possible determinant of future behaviour (e.g., wicker, ). therefore, it did not go unnoticed that tpb did not explicitly include affect or emotional variables in its model. ajzen ( ) pointed to this omission as a chief concern among his critics who claimed that his theory focussed solely on rationale decision-making and neglected the effect of emotions. ajzen ( ) argued that while affect is not an explicit variable in the theory or planned behaviour, it is likely to influence the beliefs that lead to one’s attitude, subjective norms, and perceived behavioural control (e.g., mcgee et al., as cited in ajzen, ). ajzen ( ) focuses more attention on anticipated affect, the affect expected during or following the behaviour in questions. while anticipated affect appears to be related to the early criticisms of sarver ( ) around beliefs related to the context of a behaviour, it does not address the issue of prior affect in tpb. the variance that prior affect has on non-health related behaviour may be of little consequence, but the potential for prior affect, and more specifically mood difficulties, to impact health behaviour, and mental health behaviour in particular, is considerable. while some studies have demonstrated the effect of affect on tpb (e.g., catellier & yang, ), no studies to date have clearly addressed the issue of mood difficulties (e.g., depression or low mood) on tpb. applications of the theory of planned behavior. while there are a number of difficulties with tpb, it remains one of the most popular theoretical models for behaviour change and is widely used across a variety of settings (ajzen, ). the most commonly used application of tpb in health care literature is its use in determining the ability of its three factors, attitude, normative beliefs and perceived behavioural control, to predict intentions of patients to engage in health behaviours (e.g., kam, knott, wilson, & chambers, ; plotnikoff, lubans, costigan, & mccargar, ). while intention is shown to be a relatively consistent indicator of depression self-management actual behaviour (ajzen, ), the power of each of the three antecedent variables to predict intention varies depending on the behaviour investigated. for example, perceived behavioural control and attitude were the greatest predictors of intention to engage in proper hand washing (shapiro, porticella, jiang, & gravani, ) whereas attitude and subjective norms towards premarital sex were most predictive of intentions to engage in premarital sex among females (cha, doswell, kim, charron-prochownik, & patrick, ). understanding the variation in the ability of the three tpb factors to predict specific variables helps inform and tailor interventions specific to those behaviours. interventions based on tpb factors have been demonstrated to be effective in changing behaviour (e.g., gerand & shepherd, ) and to have lasting effects (e.g., welsh et al., ). tpb-based interventions work best when tpb factors found to be the most predictive of intention to engage in a particular behaviour are the focus of the intervention. for example, in a study that evaluated the impact of a tpb intervention on hand washing, elements of the education intervention that specifically impacted attitude towards change, the tpb factor with the greatest ability to predict intention to engage in hand washing, were found to be the most effective in improving intentions to hand wash (yardley, miller, schlotz & little, ). although many tpb-based interventions have demonstrated the ability to effect significant positive change on the three antecedent variables and, subsequently, intention and actual engagement in behaviour by providing information related to the health behaviour, many of these interventions fail to provide all of the types of evidence-based knowledge related to the behaviour (i.e., what”, “where”, “why”, “how”, and “who”; e.g., gerand & shepherd, ; welsh et al., ). neglecting to incorporate all types of knowledge in an educational intervention, according to k*, lessens the desired impact of the intervention (i.e., application of depression self-management knowledge). integration of k* principles would likely add to the positive effect that tpb interventions already demonstrate. as previously discussed, the context in which behaviours occur is of particular importance to the tpb model (ajzen, ; sarver, ). context also includes affect. tpb has proven informative in studying a wide variety of health behaviours; however, examining intentions to engage in depression-related health behaviours presents unique challenges. firstly, tpb does not directly address the influence of affect and emotion (e.g., wolff, nordin, brun, berglund, & kvale, ). the nature of an individual’s mood, positive or negative, is said to have an effect on their attitude towards a behaviour, their normative beliefs as well as perceived behavioural control (e.g., johnson & tversky, ; mckee, hinson, wall, & bissonnette, ). this is true regardless of what health behaviour is being investigated but is likely to have the largest impact among individuals who are depressed and among individuals who are being asked to change behaviour related specifically to depression and low mood. as a result of these difficulties with the tpb model, it has rarely been used to investigate behaviours that contain an affective or emotional component and has never been used to investigate behaviour change in depressed individuals. knowledge of the impact of affect and mood difficulties on the tpb model is essential to a better understanding of behaviour change in the context of patient- initiated strategies for depression and low mood. rationale for the current study the current k* literature, and that of knowledge translation and transfer specifically, offers a sound theoretical basis on which to develop and deliver an effective package of evidence-based information for educational interventions related to health behaviours. however, the k* literature does not address the beliefs and attitudes of knowledge recipients that depression self-management ultimately influence whether or not those recipients act on the knowledge they have received. the underlying implicit assumption of k* appears to be that knowledge recipients fully acquire received information and immediately modify behaviour in compliance with that information. applications of k* have demonstrated mixed results regarding behaviour change (e.g., dobbins et al., ; mitton et al., ) suggesting that the effect of knowledge translation and knowledge transfer applications is dependent on factors outside the scope of k*. tpb offers a framework for better understanding the effect of k*-based educational interventions on behaviour change in health care. applications of k* would benefit greatly from framing information to coincide with known internal factors related to intention and behaviour change (i.e., attitude, normative beliefs, perceived behavioural control). reciprocally, tpb, a theory used primarily to describe the relationship between internal factors, intentions, and behavioural change, would benefit from applying k* principles to maximize the impact of educational interventions. the current study aimed to examine tpb in the context of patient-initiated strategies for depression and low mood. in addition to better understanding the relationship between tpb variables and mood difficulties, this investigation also applied a knowledge translation and knowledge transfer-based educational intervention intended to target tpb antecedent variables as a means to improving intentions and actual engagement in patient-initiated strategies for depression and low mood. it was hoped that combining tpb and knowledge translation and knowledge transfer together in this way would inform the theoretical understanding of each and also demonstrate the utility of an integrated model for educational interventions intended to change behaviour. depression self-management proposed model of knowledge translation and transfer-based behaviour change based on the strengths of knowledge translation and knowledge transfer theory and tpb, the objectives of the current study aimed to test an integrated model of behaviour change and the passage of information related to patient-initiated strategies for depression and low mood. figure is a visual representation of this hybrid model. in addition to examining the application of tpb in the context of depression and low mood, the current study integrated the behaviour change principles encompassed in tpb into the process of learning about patient- initiated strategies for depression using knowledge translation and knowledge transfer principles. in so doing, the current study was intended to develop insight into the mechanisms of behaviour change resulting from k*-based educational interventions and the effect of applying k* principles to target antecedents of intentions to engage in behaviour. figure . a visual representation of a proposed hybrid model including knowledge translation and knowledge transfer theory and the theory of planned behavior. depression self-management study overview using an online survey and educational intervention delivery system, the current study aimed to first better understand the ability of the three tpb antecedent variables, attitude, subjective norms, related to both significant others and powerful others (i.e., family physicians), and perceived behavioural control, to predict intentions to engage in and actual engagement in eight different, evidence-based patient-initiated strategies for depression and low mood: bibliotherapy, exercise, light therapy, social support, symptom monitoring, psychoeducation, adhering to medication prescriptions, and seeking psychotherapy services. for the purposes of comparison, a ninth strategy, pet therapy, which does not have empirical evidence to support its use as a patient-initiated strategy for depression and low mood, was included in the examination of tpb variables. secondly, using knowledge translation and knowledge transfer principles, an educational intervention aimed at changing attitudes and beliefs (i.e., tpb antecedent variables) toward the patient-initiated strategies for depression and low mood was developed and delivered using the online system. for the eight strategies with evidence demonstrating their effectiveness or efficacy in reducing depressive symptoms, the educational intervention was intended to improve attitudes and beliefs. in the case of pet therapy, which does not have evidence supporting its use as a patient-initiated strategy, the educational intervention was intended to dispel positive attitudes and beliefs regarding its use to improve mood. the current study investigated the impact of this educational intervention on tpb antecedent variables and the subsequent effect on intentions to engage in and actual engagement in the patient-initiated strategies for depression. the addition of pet therapy and the negative educational intervention was intended not as a control but as a means of examining differences between evidence-based depression self-management and anecdotal strategies for self-management of depression or low mood and examining differences between similarly structured positive and negative educational interventions. the educational intervention was implemented in a randomized control trial format. based on k* principles, information that the intervention group received included a) an adequate description of the strategy, b) the scientific evidence that demonstrates the strategy’s efficacy in reducing depressive symptoms, c) the scientifically supported mechanisms for the strategy’s efficacy or effectiveness, d) evidence-based recommendations on applying the strategy in day-to- day life, e) which professional organizations recommend the use of the strategy for reducing depressive symptoms, f) practical suggestions for how to engage in the patient-initiated strategies, and g) resources to help participants engage in the behaviour more easily (e.g., website links, information sheets). this information was delivered by way of text on a website. the information included in the educational intervention was selected specifically to effect change on each of tpb antecedent factors. while each type of knowledge is intended to positively, or in the case of pet therapy negatively, impact each factor to some degree, some types of knowledge may have a greater effect on one tpb factor than the others (e.g., evidence- based recommendations on applying the strategy in day-to-day life is likely to have a stronger effect on perceived behavioural control than on attitude or normative beliefs). the k*-based information was intended to improve individuals’ pre-existing ratings of attitudes, normative beliefs and perceived behavioural control toward patient-initiated strategies for depression and low mood, ultimately affecting intention to engage in these behaviours and actual engagement in these behaviours. control groups received a sham intervention in lieu of the k*-based information. the sham intervention was a section of text, similar in length to the k*-based intervention text, focussed on a historical topic loosely related to each specific strategy (e.g., depression self-management history of the olympics for exercise). this content was extracted from wikipedia entries. ratings of tpb variables were collected before and after the intervention phase, both occurring at time point one. a follow-up was completed two to three weeks after completion of the first part of the study. novel contributions the novel contributions of the current study include, at a practical level, the investigation of tpb in the context of patient-initiated strategies for depression and low mood. this investigation provides a better understanding of the attitudes and beliefs that the participant population holds towards various patient-initiated strategies and also sheds light on the manner in which tpb variables interact with each other and ultimately predict intentions and actual engagement in these behaviours. this study provides a better understanding of the application of a knowledge translation and knowledge transfer-based educational intervention on tpb variables including actual engagement in patient-initiated strategies for depression and low mood. in summary, the current study examines the theoretical application of an integrated model of knowledge translation, knowledge transfer, and tpb in the context of patient-initiated strategies for depression and low mood. objectives of the current study there are two primary objectives of the current study. the first objective is to evaluate the utility of tpb for understanding behaviour change in the context of patient-initiated strategies for depression and low mood as well as the extent to which variations in depressed mood affect the key antecedents of tpb on behaviour. this was accomplished by examining the ability of the four tpb antecedent variables (i.e., attitude, subjective norms – significant others, subjective norms – physician, perceived behavioural control) to predict intentions to engage in depression self-management nine different patient-initiated strategies for depression and low mood. subsequently, the study aimed to examine the ability of intentions to predict actual engagement in these behaviours. the second objective of the current study was to examine the impact of applying a knowledge translation and transfer-based educational intervention within a tpb framework. this educational intervention focussed on the nine patient-initiated strategies for depression and low mood being examined and aimed to change attitudes and beliefs (i.e., tpb antecedent variables) for each of these strategies. research questions objective – tpb and patient-initiated strategies the first objective of this study is to better understand tpb in the context of patient- initiated strategies for depression and low mood. research questions related to this first objective are as follows: ) do tpb antecedent variables (i.e., attitudes, subjective norms – significant others, subjective norms – physicians, perceived behavioural control) predict intentions in the context of patient-initiated strategies for depression and low mood? ) do intentions predict actual engagement in patient-initiated strategies for depression and low mood? ) does level of depressive symptoms influence attitudes, subjective norms – significant others, subjective norms – physicians, or perceived behavioural control at the composite or individual strategy levels? ) does level of depressive symptoms influence intentions to engage in patient-initiated strategies for depression and low mood? ) does level of depressive symptoms impact whether or not an individual engages in patient-initiated strategies for depression and low mood? ) does level of depressive symptoms moderate the relationship between intentions and actual behaviour? depression self-management objective – k* and tpb intervention the second objective of this study is to examine the impact of an educational intervention based on knowledge translation and transfer principles and applied within the framework of tpb. research questions related to this second objective are as follows: ) does an internet- based, tpb educational intervention based on knowledge translation and knowledge transfer principles influence ratings of tpb antecedent variables (i.e., attitudes, subjective norms – significant others, subjective norms – physicians, perceived behavioural control) for behaviours related to patient-initiated strategies for depression and low mood? ) does an internet-based, tpb educational intervention based on knowledge translation and knowledge transfer principles influence intentions to engage in patient-initiated strategies for depression and low mood? ) will individuals who receive an internet-based, tpb educational intervention based on knowledge translation and knowledge transfer principles be more likely to engage in patient- initiated strategies for depression and low mood? hypotheses objective – tpb and patient-initiated strategies hypotheses related to the first objective of the current study are as follows: ) attitudes, subjective norms – significant others, subjective norms – physician, and perceived behavioural control, as measured by ratings of all tpb antecedent variable questions, will uniquely and positively predict intentions to engage in patient-initiated strategies for depression and low mood, as measured by ratings of tpb intentions questions, at a composite level as well as for each individual strategy. ) intentions to engage in patient-initiated strategies, as measured by ratings of tpb intentions questions, will significantly predict actual engagement in each of the individual patient-initiated strategies for depression. ) level of depressive symptoms, as depression self-management measured by the phq- , will significantly change attitudes, subjective norms – significant others, subjective norms – physicians, and perceived behavioural control, as measured by ratings of tpb antecedent variable questions, at the composite and individual strategy levels. ) participants with different levels of depressive symptoms, as measured by the phq- , will have significantly different ratings of intentions, as measured by tpb intentions questions. ) level of depressive symptoms will impact whether or not an individual engages in patient-initiated strategies for depression and low mood. ) intentions to engage in patient-initiated strategies, as measured by ratings of intentions questions, will be more predictive of actual behaviour in groups identified with greater levels of depressive symptoms. objective hypotheses – k* and tpb intervention hypotheses related to the second objective of the current study are as follows: ) a knowledge translation and transfer-based tpb educational intervention will improve attitudes, subjective norms – significant others, subjective norms – physician, and perceived behavioural control towards these patient-initiated strategies, as measured by composite scores of tpb antecedent variable questions as well as similar scores related to individual patient-initiated strategies, when compared with a neutral sham intervention. in the case of pet therapy where the educational intervention aimed to demonstrate the strategy’s lack of effectiveness in managing depressive symptoms, it is hypothesized that the educational intervention will result in lower attitudes, subjective norms – significant others, subjective norms – physician, and perceived behavioural control towards this strategy, as measured by ratings of tpb antecedent variable questions, when compared with a neutral sham intervention. these effects are expected based on the theoretical understanding that if an individual is presented with easily understood, actionable information synthesized from scientific literature, they will learn and retain this information, depression self-management which, in turn, will influence their attitudes and beliefs about a topic. ) a knowledge translation and transfer-based tpb educational intervention will improve intentions to engage in patient-initiated strategies, as measured by composite scores for tpb intentions questions as well as similar scores related to individual patient-initiated strategies, when compared with a neutral sham intervention. in the case of pet therapy, the educational intervention will result in lower intentions to engage in this strategy, as measured by ratings of tpb intentions questions, when compared with a neutral sham intervention. ) participants who are exposed to knowledge translation and transfer-based tpb educational interventions for patient-initiated strategies for depression and low mood will engage more in those strategies than participants who were exposed to a neutral sham intervention. in the case of pet therapy, participants who were exposed to the educational intervention will engage less in that strategy than those participants who were exposed to the sham intervention. hypothesis testing analytic model. the general analytic plan for the current study was to begin with correlational and regression analyses then examine data with omnibus analyses (e.g., mancovas, structural equation modelling, etc.). these omnibus tests were to be followed by a series of more focussed general linear model anovas to identify more specific effects (e.g., within individual patient-initiated strategies, within individual tpb variables). the significant heterogeneity in tpb variable ratings observed between the different patient-initiated strategies for depression and low created difficulties interpreting the results of many of the planned omnibus analyses. it was decided, therefore, to place greater attention on analyses that focussed on variables associated with individual patient-initiated strategies. as a result, a greater number depression self-management of analyses than originally planned were conducted. due to the large sample size, partial eta squared values are presented to demonstrate the effect size associated with significant results. objective – tpb and patient-initiated strategies. the first objective of this study is to better understand how tpb functions in the context of patient-initiated strategies for depression and low mood. hypothesis . (ratings of all tpb antecedent variables will uniquely and positively predict ratings of intentions to engage in patient-initiated strategies for depression and low mood, at a composite level as well as for each individual strategy.) analyses for this hypothesis included pearson’s r correlations between tpb antecedent variables and intentions. linear regression analyses with the antecedent variables in one block as the predictors and intentions as the criterion variable were also conducted. careful examination of beta weights and part correlations was an important consideration in the results of the regression analyses. hypothesis . (ratings of intentions will significantly predict actual engagement in each of the individual patient-initiated strategies for depression.) logistic regression analyses for each individual strategy were conducted in order to address this hypothesis. analyses on composite (i.e., global intentions) scores were not conducted since a composite score for actual behaviour, a dichotomous variable (i.e., yes or no to engagement in one or more of the patient-initiated strategies for depression and low mood), resulted in nearly all participants with a positive response (i.e., yes, engaged in at least one patient-initiated strategy) and, therefore, no variability on which to perform a logistic regression analysis. hypothesis . (level of depressive symptoms as measured by the phq- will significantly change ratings of attitudes, subjective norms – significant others, subjective norms – physicians, and perceived behavioural control at the composite and individual strategy levels.) depression self-management in order to provide a response to this hypothesis, pearson’s r correlation analyses between depressive symptoms scores and composite/individual tpb antecedent variables were performed. a mixed model anova for the four tpb antecedent variables at the composite level and at the level of each individual patient-initiated strategy were also conducted including level of depressive symptoms (i.e., minimal, mild, moderate, and moderately severe to severe) as a between subject variable. hypothesis . (participants with different levels of depressive symptoms as measured by the phq- will have significantly different ratings of intentions.) pearson’s r correlation analyses between intentions, at the composite level and at the level of each individual patient-initiated strategy, and depressive symptoms scores were conducted to address this hypothesis. a between subjects anova with a composite intentions score across the four different levels of depressive symptoms scores (i.e., minimal, mild, moderate, and moderately severe to severe) was also conducted. finally, a mixed model anova with individual strategy scores for intentions across the four different levels of depressive symptoms was performed. hypothesis . (level of depressive symptoms will impact the whether or not an individual engages in patient-initiated strategies for depression and low mood.) in order to provide a response to this hypothesis, a chi-square analysis compared the proportion of participants that indicated actual engagement in a patient-initiated strategy of depression and low mood across the four levels of depressive symptoms. this analysis was conducted for each of the nine patient-initiated strategies for depression and low mood. hypothesis . (ratings of intentions to engage in patient-initiated strategies for depression and low mood will be more predictive of actual behaviour in groups identified with greater levels of depressive symptoms.) moderator analyses with depressive symptom scores as a depression self-management moderator between intentions and actual behaviour were conducted for each of the nine patient- initiated strategies for depression and low mood. objective – k* and tpb intervention. the second objective of this study is to examine the impact of an educational intervention based on knowledge translation and transfer principles and applied within the framework of tpb. hypothesis . (a knowledge translation and transfer-based tpb educational intervention will improve composite scores of tpb antecedent variables as well as similar scores related to individual patient-initiated strategies when compared with a neutral sham intervention. in the case of pet therapy where the educational intervention aimed to demonstrate the strategy’s lack of effectiveness in managing depressive symptoms, it is hypothesized that the educational intervention will result in lower ratings of tpb antecedent variables scores when compared with a neutral sham intervention.) a mixed model anova comparing the intervention and control group means at baseline and post-intervention was conducted for composite scores as well as scores for tpb variables related to each of the nine patient-initiated strategies in order to address this hypothesis. hypothesis . (a knowledge translation and transfer-based tpb educational intervention will improve composite scores for intentions to engage in patient-initiated strategies as well as similar scores related to individual patient-initiated strategies when compared with a neutral sham intervention. in the case of pet therapy, the educational intervention will result in lower ratings of intentions to engage in the patient-initiated strategy.) analyses for this hypothesis included mixed model anovas comparing intervention and control group means at baseline and post-intervention for composite scores as well as individual patient-initiated strategy scores. depression self-management hypothesis . (participants who are exposed to knowledge translation and transfer- based tpb educational interventions for patient-initiated strategies for depression and low mood will engage more in those strategies than participants who were exposed to a neutral sham intervention. in the case of pet therapy, participants who were exposed to the educational intervention will engage less in that strategy than those participants who were exposed to the sham intervention.) chi square analyses comparing engagement and no engagement in the intervention and control groups were conducted for each individual patient-initiated strategy in order to provide a response to this hypothesis. methods participants recruitment participants were recruited from three sources: the university of ottawa integrated system of participation in research (ispr) online portal, the kijiji ottawa website, and general practitioner offices (i.e., waiting rooms, direct physician referral) at the university of ottawa and in the community. participants from the university of ottawa ispr system were undergraduate students in the psychology or linguistics departments. participants recruited through the kijiji website were general internet users and those who were recruited in general practitioner offices were primary care patients. the study was offered in english only. study advertisements and informed consents were offered in english and french. advertisements were posted both on the ispr system and kijiji websites to recruit participants. in the case of primary care patients, participants were recruited with advertisements in the waiting room or by way of advertisements handed to patients by physicians. depressive symptoms were not an inclusion criterion although individuals with possible depressive symptoms were encouraged through advertisements and depression self-management physician recruitment to participate. children and senior adults ( years of age or older) were excluded from participation as the presentation of depression in these populations varies significantly from that of an adult population (apa, ). participants recruited through the kijiji website or through their general primary care physician’s office were eligible to be entered in a draw to win various gift certificates as compensation for their time. undergraduate students were awarded with percentage points towards their final course grades as compensation for participation in accordance with ispr system regulations. survey completion time limitation criterion the survey system recorded the amount of time participants remained on each individual webpage of the survey and interventions. following expert consultation (huta, ), a three second minimum per question was established as the criterion for participant data to be included in analyses. because students, psychology students in particular, may have had exposure to the phq- depressive symptoms measure and the locus of health control measure, the time limitations were not applied to these measures. the time limitations were also not applied to the baseline tpb questions, which were developed in table format for ease of use. the time limitation was applied to the first webpage of the intervention stage and the first webpage of the follow-up stage. specifically, this included the first pages of the educational intervention and post-intervention tpb questions for psychoeducation for the intervention group or the first pages of the sham intervention and post-intervention tpb questions for psychoeducation for the control group. thirteen participants were removed from the study for violating the time limitation criterion. depression self-management attrition see figure for a visual representation of attrition in the current study. the informed consent prompted participants to close their browser window if they desired to withdraw from the study. as a result, all participants who closed their browser windows prior to completion of either phase of the study (i.e., part or follow-up) were assumed to have withdrawn from that phase of the study. data from participants who completed part but did not complete the follow- up were used for analyses related to part . figure . participant flow and attrition from recruitment to completion. individuals*entering* study*system:* $ par cipants* randomized:* $ par cipants* withdrawing*part* :* $ interven on*group* part* :* $ control*group* part* :* $ interven on*group* followbup:* $ ( $withdrawing* followbup)* control*group* followbup:* $ ( $withdrawing* followbup)* depression self-management the website offered a more detailed description of the study and a link for entry into the study system. six hundred and thirty-four individuals entered the study website and consented to participate. a total of participants withdrew before completing part and were not randomized. the remaining participants were randomized. two hundred and thirty-five participants were assigned to the control group and were assigned to the intervention group. sixty-nine participants in the control group and participants in the intervention group did not complete the follow-up phase of the study. a total of participants completed the study in its entirety, in the control group and in the intervention group. study sample data from participants were analyzed for hypotheses related to part of the study and data from participants were analyzed for hypotheses related to the follow-up. in the total sample, three hundred ninety-seven ( . %) of the participants were women and ( . %) were men. the age of participants ranged from to years (m = . , sd = . ). the range of baseline depressive symptoms scores based on the phq- depressive symptoms measure was to (m = . , sd = . ). men and women in the sample did not significantly differ with respect to age or depressive symptoms scores. this finding is not surprising given recruitment material targeted individuals who were stressed or who were experiencing low mood. approximately one third of participants ( . %) rated their level of depressive symptoms as minimal (score range - ) and another third ( . %) rated their depressive symptoms as mild (score range - ). the majority of the remaining participants rated themselves as having a moderate (score range - ) level of depressive symptoms ( . %). a tenth of the sample ( . %) reported depressive depression self-management symptoms falling in the moderately severe range (score range - ) and . % scored in the severe range (score range - ). sample differences. the vast majority of participants were undergraduate psychology and linguistics students at the university of ottawa ( . %) recruited through the ispr online portal. no distinction was made between students in the psychology department and students in the linguistics department at the data collection phase. the remaining participants were recruited through the ottawa kijiji website ( . %) and the general practitioners’ offices ( . %). a one-way between subjects anova revealed a significant difference in age between the three groups, f( , ) = . , p < . . pairwise comparisons suggested that the kijiji sample (m = . years, sd = . years) was significantly older than the undergraduate sample (m = . years, sd = . years), t( . ) = . , p < . . the general practitioners’ offices sample (m = . years, sd = . years) was also found to be significantly older than the undergraduate sample, t( . ) = . , p < . . the kijiji sample and the general practitioners’ offices sample did not differ from one another with regard to age, t( ) = . , p = . . there was no difference between the three groups on depressive symptoms scores, f( , ) = . , p = . . the kijiji sample was found to have a greater proportion of men than the other two samples, χ ( ) = . , p < . . while some differences were noted, these samples of convenience were believed to have more similarities than differences. therefore, for the purposes of all analyses, the three samples were analysed as one. control and intervention group differences. forty-six percent ( . %) of the sample was randomized to the control group with the remainder ( . %) assigned to the intervention group. results of an independent samples t-test suggested that the intervention group (m = . years, sd = . years) was significantly older than the control group (m = . years, sd = . depression self-management years). the difference in age, although statistically significant, was considered to be marginal and was not expected to significantly influence the results of the current study. control and intervention groups did not differ significantly on depressive symptoms measure scores and had similar proportions of men and women. control and intervention group participants also had similar ratings of locus of mental health control and did not differ significantly on subscale scores related to internal, chance, physician, or other locus of mental health control, p > . . completers and part -only participant differences. while ( . %) of the overall sample completed the study in its entirety (i.e., part and the follow-up), a minority of participants, ( . %), completed part but failed to complete the follow-up. while analyses revealed no significant differences between the completers and the part -only participants with regard to age and scores on the depressive symptoms measure, the part -only group had a significantly greater proportion of men than the completers group, χ ( ) = . , p < . . since analyses revealed no meaningful differences between men and women on the variables relevant to the current study, differences in these group compositions were determined to be of little concern. completers control and intervention group differences. of the participants who completed the study in its entirety, ( . %) were in the control group and ( . %) were in the intervention group. as with the overall sample, those participants who competed the study in its entirety and were in the intervention group were significantly older (m = . years, sd = . years) than those participants in the control group who completed the study (m = . years, sd = . years), t( . ) = . , p < . . once again, although statistically significant, the difference in age between these two groups was not seen as meaningful and therefore was not considered as an explanation for differences observed in later analyses. participants in both the depression self-management control group and the intervention group who completed the study in its entirety did not differ significantly on scores on the depressive symptoms measure and the proportion of men to women was similar. no perceived depression. during part data collection for tpb variables, when intentions for a particular patient-initiated strategy were identified as low participants were prompted to explain briefly why their intentions were low for that patient-initiated strategy. these questions were posed to both control and intervention groups following the experimental portion of part of the study (i.e., following the educational intervention or the sham intervention). one hundred and fifty-seven participants ( . %) of the overall sample indicated that their low intention to engage in one of the patient-initiated strategies was due to lack of perceived depressive symptoms. for analyses related to tpb variables, and intentions in particular, participants who rated intentions low due to a lack of perceived depressive symptoms were removed from analyses. where the intentions were not implicated in analyses (e.g., hypothesis ), the full sample was used. since tpb is only applicable to persons who believe a behaviour is relevant to their current situation, participants who do not believe they have depressive symptoms are not likely to rate intentions to engage in patient-initiated strategies for depression and low mood high regardless of their attitudes and beliefs, positive or negative, towards these strategies. including these participants in analyses involving intentions was believed to confound the relationship of the variables among participants who identified patient- initiated strategies for depression and low mood as relevant to their current situation. three hundred and forty-six participants ( . %) of the total sample did not indicate that they lacked perceived depressive symptoms necessary to engage in patient-initiated strategies for depression and low mood. depression self-management materials the optimizing outcomes website through the domain name optimizingoutcomes.net, an online survey system was used to collect data during the part and the follow-up phases of the study. this online system also delivered the knowledge translation and knowledge transfer-based tpb educational intervention for patient-initiated strategies for depression and low mood as well as the sham intervention. the online survey system was secure and permitted the confidential storage of participant information and study data. educational interventions for patient-initiated strategies positive educational interventions. various evidence-based sources (anderson et al., ; jorm et al., ; mckendree-smith et al., ; patten et al., ), expert consultation, and knowledge translation principles were used to develop five types of information for each of eight patient-initiated strategies for depression and low mood. these types of information included a) an adequate description of the strategy, b) the scientific evidence that demonstrates the strategy’s efficacy or effectiveness in reducing depressive symptoms, c) the scientifically supported mechanisms for the strategy’s demonstrated efficacy, d) evidence-based recommendations on applying the strategy in day-to-day life, and e) which professional organizations recommend the use of the strategy for reducing depressive symptoms. accompanying this information were brief directions on how to access the various strategies (e.g., a bookstore website link for the recommended self-help book). as mentioned previously, these types of information were selected specifically to effect change on each of the tpb antecedent factors (i.e., attitude, subjective norms – significant others, subjective norms – physician, perceived behavioural control), which in turn were expected to have an effect on depression self-management intentions and ultimately actual engagement in the strategy behaviour. the eight patient-initiated strategies for depression encouraged in this study were bibliotherapy, exercise, light therapy, adherence to medication prescription, psychoeducation, psychotherapy, social support, and symptom monitoring. the information presented in the educational intervention for each of these patient-initiated strategies can be viewed at appendix a. a short preamble on the benefits of and evidence supporting patient-initiated strategies for depression and low mood in general is offered to participants in the intervention group before the educational intervention was presented. this preamble can also be viewed at appendix a. negative educational intervention. in the case of pet therapy, a behaviour often believed to be an effective patient-initiated strategy for reducing depressive symptoms despite a lack of scientific evidence supporting this claim, the educational intervention aimed to dissuade participants from engaging in this behaviour for the purpose of improving mood. using the same types of information that were the focus of the positive educational intervention, the negative educational intervention a) provided a description of pet therapy, b) described the scientific evidence that demonstrates pet therapy’s ineffectiveness in reducing depressive symptoms, c) outlined the mechanisms of pet therapy falsely believed to reduce depressive symptoms, and d) provided a list of the professional organizations that do not recommend the use of pet therapy for reducing depressive symptoms. the information presented in the educational intervention for pet therapy can be viewed at appendix b. a short preamble describing the ineffectiveness of some behaviours thought to reduce depressive symptoms was offered to participants in the intervention group before the negative information related to pet therapy was presented. this preamble can also be viewed at appendix b. depression self-management sham interventions for control group in order to control for expectancy bias and other effects, a sham intervention was created for the control group. the sham intervention was intended to be similar in nature to the educational intervention (i.e., a paragraph of text preceding the second set of tpb questions) but was designed to be neutral in its impact on tpb variables. in order to achieve this goal and to obtain relative consistency between the nine different sham interventions (i.e., one for each of the patient-initiated strategies for depression and low mood), wikipedia excerpts detailing some historical aspect of the behaviour (e.g., history of the light bulb for light therapy) were presented to control group participants. the excerpts were carefully chosen so as to remain neutral in their impact on tpb variables. a short preamble was presented before the sham interventions asking participants to read the paragraphs related to the history of the different patient-initiated strategies. the wikipedia source was identified at the end of each of sham interventions. the content of these sham interventions, as well as the preamble, can be viewed at appendix c. measures demographics all participants were asked to complete a series of demographic questions including age and gender. each participant’s recruitment source (i.e., university of ottawa ispr, ottawa kijiji website, general practitioners’ offices) was identified as part of the informed consent process. in order to keep the questionnaire at a reasonable length, additional demographic questions such as socioeconomic status and cultural background were not included in the current study. depression the depressive symptoms questionnaire used in this study was the primary health questionnaire depression scale (phq- ) developed by kroenke, spitzer, and williams ( ). depression self-management the phq- is a nine-item self-report measure used principally in primary care settings to determine severity of depressive symptoms based on relevant criteria. this measure has been thoroughly tested for psychometric properties (e.g., kroenke, et al., ; wittkampf et al., ). cameron, crawford, lawton, and reid ( ) reported an internal consistency cronbach’s alpha ranging from . to . in a sample of primary care patients referred to mental health specialists. in the same sample, cameron and colleagues ( ) reported strong convergent reliability with a similar measure of depressive symptom severity (r = . , p < . ). the phq- has also been shown to have strong construct validity correlating strongly with a comparable measure of depressive symptom severity (r - . , p < . ) when administered using a computer (fann et al., ). sample items of the phq- include “over the past two weeks, how often have you been feeling tired or having little energy?” and “over the past two weeks, how often have you been moving or speaking so slowly that other people could have noticed?” responses are made on a four-point likert-type scale ranging from “ – not at all” to “ – nearly every day.” total scores range from to . based on analyses conducted by kroenke and colleagues ( ), scores between and indicate mild depression, scores between and indicated moderate depression, scores between and indicated moderately severe depression, and scores greater than indicate severe depression. a diagnosis of major depression was more often appropriate with patients who scored or higher on the phq- (kroenke et al., ). for the purpose of this study, item nine of the phq- , which measures suicidal ideation (“over the past two weeks, how often have you had thoughts that you would be better of dead or hurting yourself in some way?”) was not included in the questionnaire package. if a participant endorsed this item at home, an attending physician would not be made aware and would depression self-management therefore be unable to intervene. this scenario raises issues of liability. since endorsement of the suicidal ideation item is infrequent (e.g., huang, chung, kroenke, delucchi, & spitzer, ; williams, heinemann, bode, wilson, fann, & tate, ), a decision was made to keep the same cut scores for the -item adaptation of the phq- . given that suicidal ideation is infrequently reported, prorating cut scores because of the removed suicidal ideation item would likely inflate the detection of all levels of depressive symptom severity. the adapted phq- can be viewed at appendix d. locus of health control scale form c of the multidimensional health locus of control scale (mhlc scale) is an - item, self-report measure that assesses where an individual places responsibility (self, doctors, others, or chance) for the improvement of a specific health condition (wallston, wallston, & devellis, ; appendix e). unlike other forms of the mhlc, form c is intended to be modified to assess health locus of control for any current medical condition simply by replacing the word “condition” in the original form of the scale with the name of the condition being examined. for purpose of this study, the words “mental health” replaced the word “condition.” the internal and chance health locus of control subscales contain six items each and the doctors and powerful others subscales contain three items each. this measure is considered psychometrically sound. moderate significant correlations ranging from r = . to r = . with similar scales on form b of the mhlc scale suggest high concurrent validity (wallston, stein, & smith, ). furthermore, interventions that targeted internal health locus of control, for example, resulted in higher ratings of internal control after intervention than before intervention on form c. internal consistencies were determined to be at least a cronbach’s alpha of . and depression self-management test-retest reliability was within expected ranges given the tendencies of health locus of control to shift, particularly over extended periods of time (wallston, stein, & smith, ). respondents for the mhlc scale - form c are asked to rate their level of agreement with various statements. the same six responses are available for each statement and range from “strongly disagree” to “strongly agree.” higher subscale ratings indicate a greater belief in the influence of the subscales respective locus of control. no overall global score is derived from this measure. open response prior knowledge question a brief open response question was presented aiming to determine each participant’s prior knowledge regarding patient-initiated strategies for depression and low mood. although this question is not directly related to any of the hypotheses of the current study, responses to this question provided a context to better understand participant ratings of attitudes and beliefs towards evidence-based strategies for patient-initiated strategies for depression and low mood. the following text was presented along with a text box in which the participants could provide a respond in writing: “we would like to know what strategies you are currently familiar with that might be used to deal with or treat sad or depressed mood. you are likely to be familiar with medication or counselling, as well as many other self-help strategies. please list, in point form, any and all strategies that you believe are effective in helping deal with sad or depressed moods.” theory of planned behavior questions since no developed measures investigating tpb variables have been developed, tpb measures were created specifically for the purpose of the current study according to previously developed questionnaires of this nature as well as expert recommendation (francis et al., ). baseline and post-intervention versions of tpb questions were developed. a total of five distinct depression self-management tpb questions were created in order to obtain ratings for ) attitude towards a behaviour, ) subjective norms of significant others (i.e., family and friends), ) subjective norms of physicians, ) perceived behavioural control, and ) intention to engage in a behaviour. baseline tpb questions (appendix f) were organized in five tables, one table for each of the tpb questions. participants were asked to rate their response to each question on a -point likert scale with anchor descriptions for each of the nine patient-initiated strategies for depression and low mood examined in this study. minimal information regarding these strategies was provided with the baseline tpb questions. post-intervention tpb questions (appendix g, intervention, and appendix h, control) each immediately follow the knowledge translation and knowledge transfer-based tpb educational interventions or the sham interventions provided for each of the nine patient-initiated strategies for depression and low mood. on a single page, participants were presented with the educational intervention or the sham intervention related to one strategy immediately followed by the five tpb questions related to that strategy. the wording of post-intervention tpb questions, and likert scale anchors, was identical to that of the baseline tpb questions with the exception of a preface to each question that asks the participant to consider the evidence that supports the use of the strategy, in the case of the intervention group, or to consider the paragraph that was just read (i.e., the sham intervention), in the case of the control group. additionally, the intervention group was provided with brief directions on how to access each patient-initiated strategy within the perceived behavioural control question (e.g., a bookstore link to the recommended self-help book). post-intervention tpb questions were presented the same way across all nine patient-initiated strategies for depression and low mood. depression self-management follow-up questionnaires participants were presented with a second survey two to three weeks following their initial participation. following a short introduction, all participants were asked to complete the adapted phq- , the locus of health control questionnaire, the open-response question regarding knowledge of patient-initiated strategies for depression, a series of questions regarding frequency and experience related to actual engagement in the nine patient-initiated strategies for depression and low mood, and a third set of tpb questions identical to those presented at baseline. research design this study was conducted as a mixed design randomized controlled trial. participants were randomly assigned to the control or intervention group using a randomization function that was integrated into the online survey system. the independent variable, receiving or not receiving knowledge translation and knowledge transfer-based tpb educational intervention for patient-initiated strategies for depression and low mood, was manipulated between the control group and the intervention group allowing for between group analyses. baseline as well as follow-up data resulted in a variety of repeated measures allowing for within group analyses. although random assignment of participants and manipulation of the independent variable (i.e., exposure to the educational intervention) took place in the experimental aspect of this proposed study, monitoring and control over extraneous variables was limited. procedure recruitment advertisements were posted on the university of ottawa ispr online portal as well as the kijiji ottawa website. recruitment from the general practitioners’ offices occurred through the family physicians themselves, who gave potential participants a study advertisement card, or depression self-management by way of potential participants retrieving a study advertisement card in the office’s waiting room. potential participants chose to direct themselves to the study website (i.e., www.optimizingoutcomes.net) indicated on advertisements with no further prompting from researchers or physicians. participation remained confidential throughout and physicians had no knowledge of their patients’ participation in the study. study entry and informed consent individuals who received study information through advertisements, on their own initiative, visited the www.optimizingoutcomes.net website. upon entry to the survey system website through a “register” button, individuals were presented with an informed consent to participate in the study. if an individual did not provide consent to participate, they were automatically removed from the website (i.e., they were directed to an exit webpage and prompted to close their browser window). if an individual provided electronic consent to participate, they were prompted to identify their population-affiliation (i.e., university of ottawa ispr student, kijiji ottawa user, patient) and were prompted to enter their telephone number and email address. this information was stored on a secure server. assurances regarding confidentiality were made in the informed consent and when entering contact information. contact information was required for email, or telephone, alerts and prompts to complete the follow up survey. part data collection following informed consent and contact information collection, participants were presented with a series of demographic questions. next, all participants completed the depressive symptoms measure. all participants, regardless of level of depressive symptoms, were eligible to participate in the study. following completion of the depressive symptoms measure, participants depression self-management were randomized into the control and intervention groups although the two groups are not differentiated until the intervention stage of part . randomization occurred at this step due to an earlier iteration of the study that randomized participants based on level of depressive symptoms; however, this type of blocked randomization was not used in the study’s final form and all participants regardless of level of depressive symptoms had an equal possibility of being assigned to the control or intervention group. following randomization, all participants completed the locus of health control measure and went on to complete the open-response question asking them to explain their current knowledge regarding patient-initiated strategies for depression and low mood. following completion of this one-item questionnaire, all participants were prompted to complete the baseline tpb questions. after completing the baseline tpb questions in table format, control and intervention group participants were directed to the intervention stage of part . participants in the control group were directed to the sham intervention immediately after completing the baseline tpb questions. control group participants were offered a brief preamble explaining that they would be asked to read a small paragraph related to the history of each patient-initiated strategy. control group participants were then presented with the wikipedia historical paragraph related to each of the nine patient-initiated strategy for depression and low mood and then were prompted to complete the post-intervention tpb questions. after completing the intervention stage of part , control group participants were asked to choose two of the nine patient-initiated strategies for depression or low mood to engage in over the following two- to three-week period. upon selecting two patient-initiated strategies, control group participants were thanked for their continued participation and informed that they will be contacted again in two to three weeks. they are then exited from the website. depression self-management after completing the baseline tpb questions, participants in the intervention group were presented with a brief text introducing patient-initiated strategies for depression and low mood. they were then presented with the knowledge translation and knowledge transfer-based tpb educational intervention for each of the nine patient-initiated strategies in turn, each of which was followed immediately by respective post-intervention tpb questions. after completing these questions, intervention group participants were also asked to choose which two of the nine patient-initiated strategies for depression and low mood they intend to try over the next two- to three-week period. while this set up an expectation that participants would be asked again about these behaviours, this experimental intervention is meant to mimic a similar intervention in primary care settings or public health campaigns in which these behaviours would be encouraged and, ideally, followed up. participants were then thanked, informed that they will be contacted again in two to three weeks, and exited from the website. follow-up data collection all participants were contacted through email by the researchers and asked to click on a hyperlinked text in the email that returned them to the study website to complete the follow-up survey. if participants who completed part of the study did not complete the follow-up survey within hours of receiving the first email prompt, additional emails were sent in a similar manner to a total of seven email prompts. after the seventh email prompt, participants were no longer contacted although their account remained opened for them to access the follow-up survey. in the follow-up survey, participants were presented again with the depressive symptoms measure, the locus of health control measure, and the open-response question regarding the participant’s knowledge of patient-initiated strategies for depression and low mood. the participants were then asked a series of questions regarding their experiences with the depression self-management nine patient-initiated strategies for depression and low mood over the past two to three weeks. following these questions, all participants completed a third set of tpb questions, identical to those presented at baseline in part of the study. following completion of these questions, all participants were thanked for their participation and, if eligible, asked if they wished to be entered in the draw to win a gift certificate. participants were then exited from the study. students registered in the ispr system were granted course credits by the researcher as per ispr guidelines. analyses screening and cleaning screening and cleaning of the dataset was completed in accordance with common practices (tabachnik & fidell, ). since incomplete surveys coincided with the closing of a browser window by a participant, the suggested action for withdrawal from the study, no missing data was present in the current study. where surveys were found not to be completed by participants, all data was removed from that phase of the study (i.e., part or the follow-up). prior to performing analyses, the following assumptions were tested: equal sample sizes, multivariate normality, absence of outliers, homogeneity of variance-covariance matrices, linearity, homogeneity of regression, reliability of covariate, sphericity, and absence of multicollinearity and singularity (tabachnik & fidell, ). where the assumption of sphericity was violated in anova analyses, the greenhouse-geisser correction was applied. for any multivariate analyses involving the intentions variables, multivariate outliers were removed. in the case of the baseline tpb variables, a total of participants were identified as multivariate outliers and were removed from multivariate analyses. since the majority of multivariate analyses included the intentions variable, multivariate outliers were determined using only those depression self-management participants who did not identify a lack of depressive symptoms as a reason for low intentions to engage in patient-initiated strategies for depression and low mood (as described in the methods – participants section). due to the exploratory nature of the current study, the decision was made to not control for study-wide error through bonferroni correction or other methods. as a result, all analyses were tested for significance at the p < . level. nevertheless, in the majority of instances where significance was observed, p values were found to be less than . or . . given the large number of analyses, caution is recommended when interpreting the results of analyses where significance approaches the . level. results descriptive statistics open-response self-management knowledge qualitative responses from participants were analyzed for the descriptive statistic purposes (data for participants was not recorded for the open response question due to a technical malfunction with the survey system). participants identified an average of two patient- initiated strategies for depression and low mood each and the number of strategies identified by each participant ranged from none to . a total of different strategies were identified. two hundred forty-two participants ( . %) did not identify any patient-initiated strategies. these participants remained on the webpage that contained the open-respond question for a period of time, on average (m = . seconds, sd = . seconds), similar to that of participants who did respond to the question (m = . seconds, sd = . seconds), t( . ) = . , p = . . as indicated in table , evidence-based patient-initiated strategies for depression and low mood were among the most frequently mentioned of all strategies. one hundred and sixteen depression self-management participants ( . %) mentioned exercise as a patient-initiated strategy for depression and low mood. over a fifth of participants ( . %) mentioned social support from friends and family as a strategy. therapy ( . %) and medication ( . %) were also mentioned frequently. light therapy ( . %), education (. %), and self-help books (. %) were infrequently mentioned. socializing (i.e., visiting and engaging in various activities with friends and family, not necessarily for social support purposes; . %) was the most common other strategy that was identified by participants. engaging in various enjoyable activities including listening to music ( . %), reading ( . %), watching television or a movie ( . %), meditation ( . %) and a variety of other ( . %), and unspecified enjoyable activities ( . %) were also frequently mentioned. healthy living strategies including dieting or eating healthy ( . %), self-reflection ( . %), sleep ( . %), and positive thinking ( . %) were also frequently mentioned by participants. distraction or avoidance ( . %), eating junk food ( . %), pet therapy ( . %), and a variety of other less helpful strategies were mentioned less frequently. depression self-management table frequency of participants and percentage of sample mentioning different patient-initiated strategies for depression and low mood and other strategies. n = mentions of strategy strategy f of participants % of sample evidence-based strategy exercise social support therapy medication light therapy education, self-help books enjoyable activity socializing unspecified listen to music reading watch tv or a movie meditation other (artistic expression, cooking, playing a musical instrument, being in nature, dancing, shopping, showering, sex) health living strategy healthy eating self reflection sleep positive thinking getting organized relaxation faith-related activities pet therapy other (relaxation exercises, vitamins, work breaks, abstaining from drugs/alcohol, reducing stress, staying hydrated) other strategies distraction or avoidance eating junk food other (retail therapy, crying, smoking marijuana, alcohol, self-injury) . . . . . . . . . . . . . . . . . . . . . . . . . depression self-management the results suggest that less than half of participants were able to readily identify patient- initiated strategies for the self-management of depression and low mood. half of the participants who did identify self-management strategies mentioned evidence-based patient-initiated strategies. many of the other strategies noted are related to general health living and are not specific to managing depression or low mood. theory of planned behavior variable ratings global scores. composite scores for the four tpb antecedent variables and intentions were calculated and compared (see figure .). when participants were asked to indicate the degree to which they believed the strategies could be effective in improving depressed or sad mood (i.e., attitudes) using the (not effective at all) to (extremely effective) likert scale, the average score across all nine strategies was . (sd = . ). the mean subjective norms – significant others rating, related to the degree to which participants thought their significant other, friends, or family members believed different patient-initiated strategies for depression and low mood were effective in improving mood using the (they don’t believe this at all) to (they very much believe this) likert scale, was similar at . (sd = . ). the average rating of the degree to which participants thought their family physician believed patient-initiated strategies for depression and low mood were effective in improving mood (i.e., subjective norms – physician) using the (my doctor doesn’t believe this at all) to (my doctor very much believes this) likert scale was determined to be . (sd = . ). when participants were asked to indicated their perceived behavioural control for the strategies investigated, as measured using the (not at all able) to (fully able) likert scale, the mean rating was . (sd = . ). finally, the average rating of intentions, using the (i have no intention of doing this) to (i will try this in the next depression self-management to weeks) likert scale, across the nine patient-initiated strategies for depression and low mood was found to be . (sd = . ). figure . mean scores of theory of planned behavior antecedent variables and intentions across the nine patient-initiated strategies for depression and low mood. error bars represent the standard error of the mean (sem). (note: sn-so = subjective norms – significant others, sn-p = subjective norms – physicians, pbc = perceived behavioural control), n = a repeated measures anova revealed that some of the ratings of tpb antecedent variables and intentions at the composite level were significantly different from each other, f( . , . ) = . , p < . , ηp = . . post-hoc analyses indicated that the average rating of subjective norms – physician was significantly greater than the ratings of all of the other variables in tpb model, p < . . the mean intentions score was found to be significantly lower than the ratings of all other variables, p < . . attitudes, subjective norms – significant others, and perceived behavioural control were all rated similarly at the composite level. these results suggest that, in general, participants rated their physician’s attitude towards patient-initiated strategies for depression and low mood as more favourable than their own or those of their depression self-management significant others, and also rated their physician’s attitude higher than their own perceived control over these strategies in general. intentions were rated to be significantly lower than all attitudes and beliefs. attitudes. ratings of attitude (i.e., perceived effectiveness) towards the patient-initiated strategies for depression and low mood differed significantly between strategies, f( . , . ) = . , p < . , ηp = . . as represented in figure , when participants were asked to indicate the degree to which they believed a specific strategy could be effective in improving depressed or sad mood, exercise (m = . , sem = . ) was rated significantly more effective than all other strategies, p < . . the strategy rated the second most effective among participants was social support (m = . , sem = . ) followed by psychotherapy (m = . , sem = . ), pet therapy (m = . , sem = . ), and psychoeducation (m = . , sem = . ) each of which was rated significantly different from the others, p < . -. . light therapy (m = . , sem = . ) and symptom monitoring (m = . , sem = . ) were rated similarly by participants. finally, participants rated medication (m = . , sem = . ) significantly lower than all other strategy followed by bibliotherapy (m = . , sem = . ), p < . , which was rated significantly lower than medication, p < . . a significant interaction between attitudes and gender was observed, f( . , . ) = . , p < . . post-hoc analyses revealed that women rated the perceived effectiveness of pet therapy (i.e., attitude; m = . , sem = . ) significantly higher than men (m = . , sem = . ), t( ) = . , p < . . the results suggest that attitudes towards patient- initiated strategies for depression and low mood vary considerably between the strategies themselves. these results suggest that attitudes are dependent on the specific behaviour (e.g., exercise, socializing, symptom monitoring) and not on the function of the behaviour (i.e., improving mood). depression self-management figure . average attitudes rating for each of the nine patient initiated-strategies for depression and low mood. anchors on the -point scale represent degree of response to the question “to what degree do you believe that (patient-initiated strategy for depression and low mood) could be an effective strategy for improving sad or depressed moods?” error bars represent the standard error of the mean (sem). data points determined to be not statistically different from one another are enclosed in a box. n = subjective norms – significant others. ratings related to the degree to which participants thought their significant other, friends, or family members believed different patient- initiated strategies for depression and low mood were effective in improving mood varied significantly between strategies, f( . , . ) = . , p < . , ηp = . (figure ). exercise (m = . , sem = . ) was rated significantly greater, p < . , than all other strategies with the exception of social support (m = . , sem = . ). the strategy with the third highest rating for subjective norms – significant others was therapy (m = . , sem = . ) followed, significantly, by education (m = . , sem = . ), p < . . medication (m = . , sem = . ), symptom monitoring (m = . , sem = . ), and pet therapy (m = . , sem = . ) were rated depression self-management similarly and all significantly lower than education, p < . . light therapy (m = . , sem = . ) was rated significantly lower than pet therapy and bibliotherapy (m = . , sem = . ) was rated significantly lower than light therapy and all other strategies, p < . . there was no significant interaction between subjective norms - significant others and gender, f( . , . ) = . , p = . . as with attitudes, the results of these analyses suggest that subjective norms for these strategies differ significantly based on specific behaviour. figure . average subjective norms – significant others rating for each of the nine patient initiated-strategies for depression and low mood. anchors on the -point scale represent degree of response to the question “to what degree do you think that your significant other, friends or family believe that (patient-initiated strategy for depression and low mood) could be an effective strategy for improving sad or depressed moods?” error bars represent the standard error of the mean (sem). data points determined to be not statistically different from one another are enclosed in a box. n = subjective norms – physician. participant ratings of the degree to which they thought their family physician believed patient-initiated strategies for depression and low mood were effective in improving mood varied significantly across the nine self-help strategies investigated, depression self-management f( . , . ) = . , p < . , ηp = . (figure ). exercise (m = . , sem = . ) was rated as the strategy that participants most strongly thought their physician believed was effective and was rated significantly higher than all other strategies, p < . , with the exception of medication (m = . , sem = . ). psychotherapy (m = . , sem = . ) was rated the third highest with regard to subjective norms – physician followed significantly by symptom monitoring (m = . , sem = . ), psychoeducation (m = . , sem = . ), social support (m = . , sem = . ), light therapy (m = . , sem = . ), pet therapy (m = . , sem = . ), and bibliotherapy (m = . , sem = . ) each of which was rated significantly different from the other strategies. the interaction between subjective norms - physician and gender, f( . , . ) = . , p = . , was not significant. subjective norms of physicians differed significantly based on the specific behaviour associated with the patient-initiated strategy. figure . average subjective norms - physician rating for each of the nine patient initiated- strategies for depression and low mood. anchors on the -point scale represent degree of response to the question “to what degree do you think that your doctor believes that (patient- initiated strategy for depression and low mood) could be an effective strategy for improving sad or depressed moods?” error bars represent the standard error of the mean (sem). data points determined to be not statistically different from one another are enclosed in a box. n = depression self-management perceived behavioural control. ratings of perceived behavioural control varied significantly across the nine patient-initiated strategies for depression and low mood examined, f( . , . ) = . , p < . , ηp = . (figure ). participants rated exercise (m = . , sem = . ) as the strategy they felt most capable of engaging in and rated perceived behavioural control for this strategy significantly higher than for all other strategies, p < . . social support (m = . , sem = . ) and education (m = . , sem = . ) were rated similarly with regard to perceived behavioural control and were rated significantly higher than all other strategies, p < . . pet therapy (m = . , sem = . ), psychotherapy (m = . , sem = . ), light therapy (m = . , sem = . ), and symptom monitoring (m = . , sem = . ) were all rated similarly in this respect. medication (m = . , sem = . ) was rated significantly lower than all other strategies, p < . , and bibliotherapy (m = . , sem = . ) was rated significantly lower than medication, p < . . there was a significant interaction between perceived behavioural control and gender, f( . , . ) = . , p < . . post-hoc analyses revealed that women rated perceived behavioural control for pet therapy (m = . , sem = . ) higher than men (m = . , sem = . ), t( ) = . , p < . . women were also found to have rated perceived behavioural control for psychotherapy (m = . , sem = . ) significantly higher than men (m = . , sem = . ), t( ) = . , p < . . the variability observed in the other antecedent tpb variables was also observed in the case of perceived behavioural control. ratings of this variable differed significantly based on the specific behaviour in question. depression self-management figure . average perceived behavioural control rating for each of the nine patient initiated- strategies for depression and low mood. anchors on the -point scale represent degree of response to the question “to what degree do you feel you would be able to (action related to patient-initiated strategy for depression and low mood)?” error bars represent the standard error of the mean (sem). data points determined to be not statistically different from one another are enclosed in a box. n = intentions. participants’ rating of their intention to engage in patient-initiated strategies for depression and low mood varied significantly across strategies, f( . , . ) = . , p < . , ηp = . (figure ). participants rated their intentions to engage in exercise (m = . , sem = . ) significantly greater than all other strategies, p < . , followed significantly by social support (m = . , sem = . ) and education (m = . , sem = . ), which were significantly different from each other, p < . . pet therapy (m = . , sem = . ), light therapy (m = . , sem = . ), and symptom monitoring (m = . , sem = . ) were all rated similarly with regard to intentions and significantly lower than education. psychotherapy (m = . , sem = . ) was rated significantly lower on intentions than symptom monitoring. finally, the similarly rated medication (m = . , sem = . ) and bibliotherapy (m = . , sem = . ) strategies were rated significantly lower than all other strategies, p < . . no interaction between ratings of intentions depression self-management and gender was observed, f( . , . ) = . , p = . . as with the antecedent tpb variables, ratings of intentions differed significantly based on the specific behaviour under consideration. figure . average intentions rating for each of the nine patient initiated-strategies for depression and low mood. anchors on the -point scale represent degree of response to questions asking participants to indicate their intentions to engage in behaviour related to a patient-initiated strategy for depression and low mood over the next two to three weeks. error bars represent the standard error of the mean (sem). data points determined to be not statistically different from one another are enclosed in a box. n = actual behaviour. actual behaviour related to the nine patient-initiated strategies for depression and low mood was recorded for participants. figure provides a visual representation of the frequency of participants, undifferentiated by control or intervention group status, attempting each of the different patient-initiated strategies over a two- to three-week period. the most popular strategy was exercise with nearly three quarters ( . %) of participants in the follow-up phase engaging in this behaviour at least once. two hundred and twenty participants ( . %) engaged in social support as a patient-initiated strategy for depression self-management depression. pet therapy ( . %) was the third most frequently engaged in strategy. the least popular strategies were medication ( . %), psychotherapy ( . %), and bibliotherapy ( . %). thirty-three participants ( . %) indicated that they did not attempt any of the nine patient- initiated strategies for depression. on average, participants in the follow-up phases reported attempting two (m = . , sd = . ) different patient-initiated strategies over the two- to three- week period. figure provides a visual representation of the frequency of participants, undifferentiated by control or intervention group status, engaging in one or multiple strategies. figure . frequency of participants attempting the nine different patient-initiated strategies for depression and low mood over a two- to three-week period undifferentiated by control or intervention group status. n = depression self-management figure . frequency of participants attempting no, one, or multiple patient-initiated strategies for depression and low mood over a two to three week period undifferentiated by control or intervention group status. n = in summary, analyses suggest that ratings of tpb antecedent variables and intentions are not uniform across the different patient-initiated strategies for depression and low mood. for example, attitudes towards exercise as a patient-initiated strategy were significantly more favourable than they were towards bibliotherapy or medication adherence. exercise was also believed by participants to be more favourably viewed by physicians than all other patient- initiated strategies with the exception of medication adherence. results also indicate that ratings of attitudes, subjective norms – significant others, subjective norms – physician, perceived behavioural control, and intentions differ relative to one another depending on the patient- initiated strategy investigated. the heterogeneity of ratings for tpb constructs across patient- initiated strategies and relative to each other between strategies did not support the use of omnibus or full-model analyses as originally planned due to the potential of effects being masked and the conditions (i.e., statistical assumptions) required for such analyses. depression self-management hypothesis testing hypothesis hypothesis was related to objective one of this study (i.e., examining tpb in the context of patient-initiated strategies for depression and low mood) and stated that ratings of all tpb antecedent variables will uniquely and positively predict ratings of intentions to engage in patient-initiated strategies for depression and low mood, at a composite level as well as for each individual strategy. correlation analyses. correlation analyses were used first to determine the relationship of all tpb variables to each other. pearson’s r correlation analyses on overall composite scores for the four tpb antecedent variables and intentions revealed significant, p < . , positive inter- correlations among the four predictor variables and correlations between the four predictor variables and intentions (see table ). significant, positive correlations were observed between antecedent variables (i.e., attitudes, subjective norms – significant others, subjective norms – physician, perceived behavioural control) and intentions in all case at the level of each individual patient-initiated strategy (see table ). correlations between composite scores of antecedent variables were generally of moderate strength, r = . to r = . , with the exception of the relationship between subjective norms – significant others and perceived behavioural control, r = . , p < . , and the relationship between subjective norms – physician and perceived behavioural control, r = . , p < . , both of which demonstrated weaker, although still significant, positive associations. the same pattern was observed in the results of correlation analyses at the level of individual patient-initiated strategies. depression self-management depression self-management the relationship between composite scores of tpb antecedent variables and the composite score of intentions was strongest between perceived behavioural control and intentions, r = . , p < . , a moderate correlation. analyses at the level of each individual patient-initiated strategy revealed that the strongest relationship between antecedent variables and intentions was that between perceived behavioural control and intentions, which ranged from r = . to r = . , p < . . composite and individual strategy scores of attitudes were found to have a moderate correlation with respective scores on intentions. the relationship between attitudes and intentions was consistently second strongest to the relationship between perceived behavioural control and intentions. with the exception of the relationship between subjective norms – physician and intentions in the case of medication, r = . , p = . , the composite scores and individual strategy scores of subjective norms – significant others and subjective norms – physician were shown to have a significant yet more modest positive association with respective scores on intentions. linear regression analyses. in order to determine the amount of variance in intentions explained by the tpb antecedent variables, linear regression analyses were used. these analyses were also meant to identify the ability of individual variables to predict intentions. linear regression analyses between the composite scores of the four tpb antecedent variables, as predictor variables, and the composite score of the criterion variable intentions revealed that composite scores of attitude, subjective norms – significant others, subjective norm – physician, and perceived behavioural control explained . % of the variance in the composite score of intentions to engage in patient-initiated strategies for depression and low mood, fchange( , ) = . , p < . . analyses of scores for individual strategies revealed the amount of variance in scores of intentions explained by scores of the respective antecedent variables depression self-management ranged from . % in the case of social support, fchange( , ) = . , p < . , to . % in the case of psychotherapy, fchange( , ) = . , p < . (table ). depression self-management depression self-management part correlation analyses, used to determine the amount of variance uniquely explained by each individual variable, suggest that the composite score of perceived behavioural control is the most significant predictor of the composite score of intentions, uniquely explaining . %, rpbc = . , p < . , of the variance in that variable. the composite score of attitudes also uniquely predicted the composite score of intentions, rattitude = . , p < . , but did so to a limited degree explaining less than % of the variance in intentions. composite scores of subjective norms – significant others and subjective norms – physician did not significantly predict the composite score of intentions on their own. the strength of the composite perceived behavioural control score to predict the composite score of intentions was also observed at the individual patient-initiated strategy level. the amount of variance in intentions scores that was uniquely explained by scores of perceived behavioural control ranged from . %, in the case of bibliotherapy, rpbc = . , p < . , to as much as . % with social support, rpbc = . , p < . . although scores on attitudes were also found to uniquely predict scores of intentions in the case of most individual strategies, the amount of variance in scores of intentions explained by the score of attitudes was never more than . %, which was observed in the case of light therapy, rattitude = . , p < . . scores of subjective norms- physician were rarely identified as unique predictors of scores of intentions in analyses at the level of the individual patient- initiated strategies and when identified as such explained less than % of the variance in scores of intentions. scores of subjective norms – significant others was identified as a significant predictor of intentions only in the case of light therapy, however, the amount of variance explained was little more than %, rsnso = . , p < . . the results of the correlation and linear regression analyses above were replicated using post-intervention tpb question data. depression self-management the results of theses analyses partially support the first hypothesis that all tpb antecedent variables will significantly and uniquely predict intentions to engage in these behaviours. the results suggest that while ratings of tpb antecedent variables together explain a significant amount of variance in ratings of intentions, only attitudes and perceived behavioural control significantly and uniquely predict intentions on their own on a consistent basis. hypothesis the second hypothesis was that ratings of intentions will significantly predict actual engagement in each of the individual patient-initiated strategies for depression. logistic regression analyses. logistic regression analyses were intended to examine the ability of intentions to predict actual engagement, a binary variable (i.e., engaged in behaviour, did not engage in behaviour), in each individual patient-initiated strategy. results of the logistic regression analyses at the level of each individual patient-initiated strategy revealed that scores of intentions significantly predicted actual engagement in all cases (see table ). of the nine patient-initiated strategies where scores of intentions were found to significantly predict actual engagement, only two produced a meaningful change in the percentage of actual engagement predicted correctly from block of the analyses. scores of intentions to engage in exercise, or = . ( % ci = . – . ), and medication adherence, or = . ( % ci = . – . ), were both found to meaningfully predict actual engagement in behaviour related to these patient-initiated strategies. depression self-management table logistic regression analyses for intentions to engage in patient-initiated strategies for depression and low mood predicting actual engagement in behaviours related to these strategies two to three weeks later. odds ratio % ci wald df p ∆% predicted correct books . . – . . < . exercise . . – . . < . . light . . – . . < . medication . . – . . < . . education . . – . . < . therapy . . – . . < . social support . . – . . . symptom monitoring . . – . . <. pet therapy . . – . . <. note. ci = confidence interval, n = the results of these analyses partially support the hypothesis that ratings of intentions would significantly predict actual engagement for patient-initiated strategies for depression and low mood. while intentions significantly predicted actual engagement for all behaviours, meaningful changes were noted in the case of only two behaviours. hypothesis the third hypothesis of the study related to objective one was that level of depressive symptoms as measured by the phq- will significantly change ratings of attitudes, subjective norms – significant others, subjective norms – physicians, and perceived behavioural control at the composite and individual strategy levels. depression self-management correlation analyses. correlation analyses were used to determine the strength and nature of the relationship between depressive symptoms scores and the tpb antecedent variables. pearson’s r correlation analyses between composite scores of each of tpb antecedent variables and scores on the phq- depressive symptom measure revealed no significant associations (see table ). at the individual strategy level, two significant correlations were observed. a weak, negative correlation was revealed between scores on the depressive symptoms measure and scores of perceived behavioural control for social support, r = -. , p < . . also in the case of social support, a weak, positive association was found between subjective norms = physician and scores on the depressive symptoms measure, r = . , p < . . no other associations between tpb variables scores and scores on the depressive symptoms measure were observed. depression self-management table pearson’s r correlations between level of depressive symptoms as measured by the phq- and the theory of planned behavior antecedent variables (i.e., attitudes, subjective norms – significant others, subjective norms – physicians, and perceived behavioural control). results of correlation analyses between overall composite scores are presented as are the results of analyses with individual patient-initiated strategy scores. attitudes sn-so sn-physician pbc composite -. -. -. -. books -. -. -. -. exercise -. -. . -. light . . -. -. medication . -. -. . education -. -. . -. therapy -. -. . -. social support -. . . * -. ** symptom monitoring -. -. -. -. pet therapy -. -. -. -. note. sn = subjective norms, pbc = perceived behavioural control, *p < . , **p < . n = mixed model anova analyses. for interaction analyses, scores of depressive symptoms were categorized into four levels (i.e., minimal, mild, moderate, moderately severe to severe). these categories were chosen for interaction analyses due to the qualitative differences between participants reporting with the different level of depressive symptoms as well as the more balanced distribution, as compared to the phq- five categories, of participants across these four categories. depression self-management these mixed model anova analyses were conducted in order to determine depressive symptom group (i.e., minimal, mild, moderate, moderately severe to severe) differences on tpb antecedent variables. the mixed model anova analysis of composite scores for the four tpb antecedent variables revealed no significant interaction with level of depressive symptoms, f( . , . ) = . , p = . . similar analyses at the level of individual strategies revealed significant interactions between scores for the four tpb predictor variables and level of depressive symptoms in one case and approached significance in another. firstly, ratings of the four theory or planned behaviour antecedent variables interacted significantly with level of depressive symptoms in the case of social support, f( . , . ) = . , p < . , ηp = . (figure ). simple main effects for level of depressive symptoms were observed both in subjective norms – physician and perceived behavioural control for this patient-initiated strategy. participants with a mild level of depressive symptoms rated subjective norms – physician (m = . , sd = . ) for social support significantly lower than participants with a moderately severe to severe level of depressive symptoms (m = . , sd = . ), t( ) = - . , p < . . with regard to perceived behavioural control, participants with a moderately severe to severe range of depressive symptoms rated their ability to engage in social support significantly lower (m = . , sd = . ) than participants in the minimal range of depressive symptoms (m = . , sd = . ), t( . ) = - . , p < . , and participants in the mild range of depressive symptoms (m = . , sd = . ), t( ) = - . , p < . . no other significant differences in the scores of tpb antecedent variables between participants of different levels of depressive symptoms were observed in the case of social support. depression self-management figure . comparison of mean theory of planned behavior antecedent variable scores across the four levels of depressive symptoms, as measured by the phq- (i.e., minimal = - , mild = - ), moderate = - , and moderately severe to severe range = - ), for social support patient-initiated strategy for depression and low mood. error bars represent the standard error of the mean (sem). n = an interaction approaching significance was observed scores of the four tpb antecedent variables for exercise and level of depressive symptoms, f( . , . ) = . , p = . (figure ). while no formal post-hoc comparisons were made to determine the significance of simple main effects, the graphical representation of this data suggests that participants with a minimal level of depressive symptoms rated their perceived behavioural control regarding exercise as a patient-initiated strategy for depression and low mood as higher (m = . , sem = . ) than participants in the mild range (m = . , sem = . ), participants in the moderate range (m = . , sem = . ), and participants in the moderately severe to severe range of depressive symptoms (m = . , sem = . ). no other simple main effects appeared to trend towards significance in the case of exercise. depression self-management figure . comparison of mean theory of planned behavior antecedent variable scores across the four levels of depressive symptoms, as measured by the phq- (i.e., minimal = - , mild = - ), moderate = - , and moderately severe to severe range = - ), for the exercise patient- initiated strategy for depression and low mood. error bars represent the standard error of the mean (sem). n = these results do not support the third hypothesis and suggest that level of depressive symptoms does not have a significant impact on the composite scores of antecedent variables or the ratings of antecedent variables associated with the majority of individual patient-initiated strategies for depression and low mood. hypothesis the fourth hypothesis of the study, which was related to objective one, was that participants with different levels of depressive symptoms as measured by the phq- will have significantly different ratings of intentions. correlation analyses. correlation analyses were used to determine the strength and nature of the relationship between depressive symptoms scores and ratings of intentions. pearson’s r correlation analyses between scores on the phq- depressive symptoms measure and depression self-management a composite score of intentions revealed no significant association between the two variables, r = . , p = . . similar analyses between level of depressive symptoms and intentions for individual patient-initiated strategies revealed one significant association. a significant, weak negative relationship was observed between depressive symptom scores and ratings of intentions for social support, r = -. , p < . . no other significant associations between the depressive symptoms measure scores and intentions scores was observed. anovas. anova analyses were conducted in order to determine depressive symptom group (i.e., minimal, mild, moderate, moderately severe to severe) differences on ratings of intentions. a between subjects anova comparing a composite score of intentions across the four levels of depressive symptoms did not reveal a significant interaction, f( , ) = . , p = . . a mixed model anova of ratings of intentions across all nine strategies with level of depressive symptoms as a between-subjects variable revealed did not reveal a significant interaction between ratings of intentions and level of depressive symptoms, f( . , . ) = . , p = . . the results of these analyses do not support the hypothesis that level of depressive symptoms changes the ratings of intentions at the composite level or at the level of individual patient-initiated strategies for depression and low mood. hypothesis the fifth hypothesis of the study related to objective one was that level of depressive symptoms will impact whether or not an individual engages in patient-initiated strategies for depression and low mood. pearson chi-square analyses. chi-square analyses were conducted in order to determine if depressive symptom group (i.e., minimal, mild, moderate, moderately severe to severe) depression self-management resulted in different frequencies of engagement and no engagement in patient-initiated strategies than would have otherwise been expected. crosstabs pearson chi-square analyses with actual engagement (yes, no) and level of depressive symptoms (i.e., minimal, mild, moderate, and moderately severe to severe) for each individual patient-initiated strategy revealed significant differences in three cases and approached significance in one case. participants with a moderate level of depressive symptoms engaged in medication adherence significantly more than participants in the minimal range of depressive symptoms, χ ( ) = . , p < . . participants with a moderately severe to severe range level of depressive symptoms were significantly more likely than all other participants to engage in education as a patient initiated strategy for depression and low mood, χ ( ) = . , p < . . in the case of psychotherapy, participants in the moderate range and the moderately severe to severe range were significantly more likely to seek psychotherapy services than other participants, χ ( ) = . , p < . . a trend towards significance was observed in the case of light therapy. participants with minimal depressive symptoms were less likely to engage in light therapy than participants with greater levels of depressive symptoms, χ ( ) = . , p = . . these analyses partially support the hypothesis that level of depressive symptoms impacts whether or not an individual engages in patient-initiated strategies for depression and low mood. participants with more severe levels of depressive symptoms were more likely to engage in medication adherence, psychoeducation, and psychotherapy than participants with less severe levels of depressive symptoms. depression self-management hypothesis hypothesis , the final hypothesis related specifically to objective one, was that ratings of intentions to engage in patient-initiated strategies for depression and low mood will be more predictive of actual behaviour in groups identified with greater levels of depressive symptoms moderation analyses. these analyses were used to determine whether or not level of depressive symptoms moderated the relationship between intentions and actual engagement. moderator analyses using process by dr. hayes, a syntax developed for moderator analyses in spss, revealed no significant moderation of scores on the depressive symptoms measure on the ability of scores of intentions to predict actual engagement in the any of the patient-initiated strategies for depression and low mood (table ). table results of moderator analyses using process syntax developed by hayes ( ). interaction coefficient represents the added value of the score on the depressive symptoms measure as a moderator in the relationship between intentions and actual engagement in behaviours related to nine different patient-initiated strategies for depression and low mood. interaction coefficient standard error p lower limit % ci upper limit % ci bibliotherapy . . . -. . exercise . . . -. . light therapy -. . . -. . medication . . . -. . education . . . -. . psychotherapy -. . . -. . social support . . . -. . symptom monitoring . . . -. . pets . . . -. . * p < . , n = depression self-management the results of these analyses do not support the hypothesis that the association between intentions and actual engagement is moderated by level of depressive symptoms such that the association between the two variables would be stronger for participants with more severe levels of depressive symptoms. summary of results for objective hypotheses the results of analyses for the hypotheses related to objective one of this study, the investigation of tpb in the context of patient-initiated strategies for depression and low mood, suggest that tpb functions well in the context of these behaviours with antecedent variables generally predicting intentions and intentions, albeit to a limited degree, predicting actual engagement. these results also suggest that level of depressive symptoms does not change the way tpb functions in the context of these patient-initiated strategy behaviours except in isolated cases. hypothesis hypothesis is the first hypothesis associated with objective two of the current study. objective two was to investigate the impact of a knowledge translation and knowledge transfer-based educational intervention on tpb variables. hypothesis stated that this educational intervention will improve composite scores of tpb antecedent variables as well as similar scores related to individual patient-initiated strategies when compared with a neutral sham intervention. in the case of pet therapy where the educational intervention aimed to demonstrate the strategy’s lack of effectiveness in managing depressive symptoms, it is hypothesized that the educational intervention will result in lower ratings of tpb antecedent variables scores when compared with a neutral sham intervention. depression self-management composite score mixed model anova analyses. composite score anova analyses were intended to determine the effect of the educational intervention from baseline to post intervention on tpb antecedent variables. mixed model anova analyses with composite scores, excluding scores for pet therapy due to the intended negative effect of the educational intervention, revealed significant interactions between time (baseline and post-intervention) and group (control and intervention) for attitudes, f( , ) = . , p < . , ηp = . , subjective norm – significant others, f( , ) = . , p < . , ηp = . , and subjective norm – physician, f( , ) = . , p < . , ηp = . . see figures through for visual representations of these interactions. post-hoc analyses revealed no significant difference between control and intervention group composite score means at baseline for attitudes, t( ) = . , p = . , subjective norms – significant others, t( ) = . , p = . , and subjective norms – physician, t( ) = . , p = . . at post-intervention, intervention group composite score means were significantly greater than control group means in the case of attitudes, t( ) = . , p < . , d = . and subjective norms – physician, t( ) = . , p < . , d = . . the significant interaction observed in the case of subjective norms – significant others did not result in a significant difference between control and intervention group means at post- intervention. a significant interaction between time and group was not observed in the case of composite scores for perceived behavioural control, f( , ) = . , p = . , ηp = . . depression self-management figure . interaction between time (baseline and post-intervention) and group (control and intervention) for a composite score of attitudes. n = figure . interaction between time (baseline and post-intervention) and group (control and intervention) for a composite score of subjective norms – significant others. n = depression self-management figure . interaction between time (baseline and post-intervention) and group (control and intervention) for a composite score of subjective norms – physician. n = individual strategy scores mixed model anova analyses. attitudes. individual strategy anova analyses were intended to determine the effect of the educational intervention from baseline to post intervention on tpb antecedent variables. in the case of attitudes, significant interactions between time (baseline and post-intervention) and group (control and intervention) at the individual patient-initiated strategy level were observed for light therapy, f( , ) = . , p < . , ηp = . , education, f( , ) = . , p < . , ηp = . , and symptom monitoring f( , ) = . , p < . , ηp = . . see figures through for visual representations of these interactions. control and intervention groups were found to have similar means for attitudes at baseline for light therapy, t( ) = . , p = . , education, t( ) = . , p = . , and symptom monitoring, t( ) = . , p = . . following the intervention phase of part , participants in the intervention group rated attitudes significantly higher than participants in the control group for education, t( ) = . , p < . , d = . . this pattern was depression self-management not observed to the same degree in the case of light therapy, t( ) = . , p = . or symptom monitoring, t( ) = . , p = . . figure . interaction between time (baseline and post-intervention) and group (control and intervention) for attitude toward light therapy. n = figure . interaction between time (baseline and post-intervention) and group (control and intervention) for attitude toward education. n = depression self-management figure . interaction between time (baseline and post-intervention) and group (control and intervention) for attitude toward symptom monitoring. subjective norm – significant others. a significant interaction between time and group for subjective norm – significant others scores was observed only in the case of education, f( , ) = . , p < . , ηp = . . see figure for a visual representation of the interaction. at baseline, control and intervention groups did not significantly differ from one another on their score of subjective norm – significant others for this strategy, t( ) = . , p = . . at post- intervention, the intervention group rated subjective norm – significant others significantly higher than participants in the control group, t( ) = . , p < . , d = . . depression self-management figure . interaction between time (baseline and post-intervention) and group (control and intervention) for subjective norm – significant other in the case of education. n = subjective norm – physician. for subjective norm – physician scores, significant interactions between time and group were observed in three cases. these interactions were observed in the case of medication, f( , ) = . , p < . , ηp = . , education, f( , ) = . , p < . , ηp = . , and symptom monitoring, f( , ) = . , p < . , ηp = . . see figures through for visual representations of these interactions. in the case of all three strategies, baseline ratings of subjective norm – physician did not significantly different between intervention and control group participants: medication, t( ) = . , p = . , education, t( ) = . , p = . , and symptom monitoring, t( ) = . , p = . . only in the case of education were post-intervention ratings of subjective norm – physician significantly higher for intervention group participants when compared with that of control group participants, t( ) = . , p < . , d = . . significant interactions observed with medication depression self-management and symptom monitoring did not result in significant differences between control and intervention group means at post-intervention. figure . interaction between time (baseline and post-intervention) and group (control and intervention) for subjective norm – physician in the case of medication. n = depression self-management figure . interaction between time (baseline and post-intervention) and group (control and intervention) for subjective norm – physician in the case of education. n = figure . interaction between time (baseline and post-intervention) and group (control and intervention) for subjective norm – physician in the case of symptom monitoring. n = depression self-management pet therapy mixed model anova analyses. in the case of pet therapy where the educational intervention was intended to have a negative effect (i.e., lower attitudes, subjective norms – significant others, subjective norms – physicians, perceived behavioural control), significant interactions between time and group were observed for ratings of attitude, f( , ) = . , p < . , ηp = . , subjective norm – significant others, f( , ) = . , p < . , ηp = . , and subjective norm – physician, f( , ) = . , p < . , ηp = . . see figures through for visual representations of these interactions. at baseline, control and intervention group means for each of these tpb variables did not differ significantly from each other: attitude, t( ) = - . , p = . , subjective norm – significant other, t( ) = - . , p = . , and subjective norm – physician, t( ) = . , p = . . at post-intervention, ratings of subjective norm – physician, t( ) = - . , p < . , d = . , were significantly lower amongst the intervention group participants when compared with the control group participants. a similar pattern was not observed to the same degree in the case of ratings for attitude, t( ) = - . , p = . . ratings of subjective norm – significant others at post-intervention were not found to differ significantly from one another despite the significant interaction observed. depression self-management figure . interaction between time (baseline and post-intervention) and group (control and intervention) for attitude toward pet therapy. n = figure . interaction between time (baseline and post-intervention) and group (control and intervention) for subjective norm – significant others in the case of pet therapy. n = depression self-management figure . interaction between time (baseline and post-intervention) and group (control and intervention) for subjective norm – physician in the case of pet therapy. n = the analyses associated with hypothesis partially supported the hypothesis that the educational intervention would have a positive, or negative, impact on tpb antecedent variables. at the composite level, attitudes and subjective norms – physicians were positively and significantly influenced by the educational intervention. at the level of individual strategies, antecedent variable ratings for the education patient-initiated strategy were impacted most significantly by the educational intervention. other positive effects were also observed in isolated cases. ratings for antecedent variables for pet therapy were also significantly impacted in the expected direction. hypothesis the eighth hypothesis of the this study, related to objective two, stated that the educational intervention used will improve composite scores for intentions to engage in patient- initiated strategies as well as similar scores related to individual patient-initiated strategies when depression self-management compared with a neutral sham intervention. in the case of pet therapy, the educational intervention will result in lower ratings of intentions to engage in the patient-initiated strategy. mixed model anova analyses. these anova analyses were intended to determine the effect of the educational intervention from baseline to post intervention on intentions. mixed model anova analyses at the composite level did not reveal a significant interaction between time (baseline and post-intervention) and group (control and intervention) for scores of intentions to engage in patient-initiated strategies for depression and low mood, f( , ) = . , p = . , ηp = . . significant interactions between time and group were observed at the individual strategy level for bibliotherapy, f( , ) = . , p < . , ηp = . , and education, f( , ) = . , p < . , ηp = . . see figures and for visual representations of these interactions. in the case of bibliotherapy, the significant interaction was the result of differences between intervention and control groups observed at baseline; therefore, this interaction is not useful in the context of this study. in the case of education, no differences were observed between intervention and control group means at baseline, t( ) = . , p = . or at the post- intervention phase, t( ) = . , p = . . depression self-management figure . interaction between time (baseline and post-intervention) and group (control and intervention) for intentions in the case of bibliotherapy. n = figure . interaction between time (baseline and post-intervention) and group (control and intervention) for intentions in the case of education. n = depression self-management the results of these analyses do not support the hypothesis that the educational intervention would significantly increase ratings of intentions at the composite level and the level of each of the individual patient-initiated strategies for depression and low mood. hypothesis hypothesis was that participants who are exposed to the educational interventions for patient-initiated strategies for depression and low mood will engage more in those strategies than participants who were exposed to a neutral sham intervention. in the case of pet therapy, participants who were exposed to the educational intervention will engage less in that strategy than those participants who were exposed to the sham intervention chi square analyses. chi-square analyses were conducted to determine whether the frequencies of actual engagement in those who were exposed to the educational intervention and those who were not were significantly different than would have been expected had there been no intervention. chi square analyses revealed that frequencies of actual engagement and no actual engagement in the intervention group were not significantly different from frequencies of actual engagement and no actual engagement in the control group for all of the nine patient- initiated strategies for depression and low mood, p > . . when differentiated by level of depressive symptoms (i.e., minimal, mild, moderate, moderately severe to severe), one significant chi square result was observed and one trend towards significance was observed. the significant chi square result was observed in the case of psychotherapy at the moderate level of depressive symptoms and suggested that participants in the intervention group with a moderate level of depressive symptoms were significantly more likely than participants in the control group with a moderate level of depressive symptoms to engage in behaviour related to seeking psychotherapy services, χ ( ) = . , p < . . the trend towards significance was observed in depression self-management the case of exercise for participants with a moderately severe to severe level of depressive symptoms. in this case, participants in the intervention group with a moderately severe to severe level of depressive symptoms were more likely, although not significantly so, than participants in the control group with a moderately severe to severe level of depressive symptoms to engage in behaviour related to exercise as a patient-initiated strategy for depression and low mood, χ ( ) = . , p = . . the analyses related to hypothesis partially supported the hypothesis that the educational intervention would improve frequency of actual engagement in patient-initiated strategies. when differentiated by level of depressive symptoms, participants with a more severe level of depressive symptoms who had also been exposed to the educational intervention were somewhat more likely than participants with a similar level of depressive symptoms who were in the control group to engage in psychotherapy. summary of results for objective hypotheses the analyses for hypothesis , , and were related to objective two of this study, which investigated the impact of a knowledge translation and knowledge transfer-based educational intervention on the variables within tpb and actual engagement of the patient-initiated strategy behaviours themselves. the educational intervention was observed to have a significant albeit minimal impact on tpb antecedent variables. intentions were not impacted by the intervention, however, frequency of actual engagement appears to have been improved in isolated cases. the negative educational intervention had a significant impact on many of the antecedent variables for pet therapy. depression self-management discussion depression is a major health concern. in order to help alleviate the burden of the condition on the primary health care system, efforts must be made to encourage the use of patient-initiated strategies for depression and low mood for self-management. the current study had two main objectives. the first objective was to better understand the tpb model of behaviour change in the context patient-initiated strategies for depression and low mood. in so doing, the current study was intended to provide insight into the most relevant variables and mechanisms of behaviour change in this context. secondly, the current study aimed to investigate the impact of a knowledge translation and knowledge transfer-based educational intervention on tpb variables and, ultimately, actual engagement in patient-initiated strategies for depression and low mood. summary of main findings theory of planned behavior in the context of patient-initiated strategies. results of the current study support the use of tpb in the context of patient-initiated strategies for depression and low mood. tpb antecedent variables, attitudes, subjective norms – significant others, subjective norms – physicians, and perceived behavioural control, were found to collectively explain . % of the variance in intentions to engage in patient-initiated strategies for depression and low mood in general and between . % and . % at the individual strategy levels. furthermore, findings of the current study indicated that intentions to engage in patient-initiated strategies for depression and low mood significantly predicted, although to a limited degree, actual engagement in these behaviours. these findings are similar to those found in other studies using tpb in the context of health behaviours (e.g., french, darker, eves, & sniehotta, ; gronoj, bech-larsen, chan, & tsang, ; pineles & depression self-management parentse, ) and the amount of variance in intentions to engage in these patient-initiated strategies explained by tpb antecedent variables is comparable to that of other studies examining intentions to engage in health behaviours (e.g., boudreau & godin, ; cooke & french, ; hyland, mclaughlin, boduszek, & prentice, ). perceived behavioural control and attitudes were found to be the greatest unique predictors of intentions at the composite level and at the level of some individual strategies. while little to no tpb investigations exist for many of the behaviours related to the patient- initiated strategies examined in the current study (e.g., symptom tracking, bibliotherapy, light therapy) there is research investigating these behaviours used for other health conditions. in these cases, the findings of the current study are similar to those found in other studies. for example, in the case of exercise, perceived behavioural control has consistently been found to be the greatest predictor of intentions to engage in exercise behaviours (e.g., catellier & yang, ; spink, wilson, & bostick, ). furthermore, previous research investigating medication adherence found that attitudes was a significant predictor of intentions (e.g., pineles & parente, ). it is clear that findings from the current study correspond with past research in this field. the novel contribution of the current study’s findings is both the variety of behaviours investigated as well as the context in which these behaviours are considered (i.e., self- management of depression or low mood). this research is necessary since investigating behaviour change related to exercise in the context of body image and weight loss is different than in the context of mood improvement. results of the current study suggest that level of depressive symptoms does not meaningfully impact the variables associated with tpb and attitudes in particular. these findings are at odds with previous research that suggests negative affect has a significant impact on depression self-management attitudes in the case of exercise (catellier & yang, ). this discrepancy may be due to difference in context (i.e., the purpose of the behaviour) and the type of affect measured (i.e., subjective experience versus objective measurement of depressive symptoms). nevertheless, the findings of the current study, which demonstrated a functional model of tpb, suggest that level of depressive symptoms as measured by a gold standard assessment tool (i.e., phq- ) does not have a meaningful impact on attitudes or any other tpb variables in the context of patient- initiated strategies for depression and low mood. impact of educational intervention results of the current study also showed that an educational intervention based on knowledge translation and knowledge transfer principles specifically targeting the antecedent variables of tpb model and delivered using a one-time, internet-based, text medium significantly improved both attitudes and subjective norms – physicians for patient-initiated strategies for depression and low mood in general. improvements in attitudes, subjective norms – significant others, and subjective norms – physicians also occurred in isolated cases at the level of each individual strategy. perceived behavioural control and intentions were not improved as a result of the educational intervention, neither at the composite level nor at the level of the individual strategies. in the case of pet therapy where the educational intervention was negative, the results suggest that this intervention was successful at reducing attitudes and subjective-norms - physician. these findings are consistent with previous research demonstrating the impact of similar educational interventions on attitudes and subjective norms (e.g., anderson, noar, & rogers, ; zhang, shi, chen, wang, & wang, ) related to other health behaviours. unlike the findings of the current study, previous research has demonstrated the ability to improve perceived behavioural control and intentions related to health behaviours depression self-management (e.g., milton & mullan, ; zhang et al., ). the lack of such an effect in the current study may be explained by the absence of multiple indicators for perceived behavioural control and intentions. the current study used only one indicator for each construct (i.e., attitudes, subjective norms, etc.) for each behaviour. doing so limited the capacity of the study to fully tap the constructs investigated. another reason for the lack of effect observed on perceived behavioural control and intentions may have been the dosage of the intervention (i.e., a one-time, one medium exposure), which, in comparison to other interventions (e.g., tyson, rosenthal, & harriet, ), was minimal. general discussion prior knowledge while everyone experiences low mood at some point in their life, it is interesting that the results of the current study suggest that only one in two people readily identify strategies they can employ themselves to manage low mood or depression. it is acknowledged that the absence of a response to the open-response question does not necessarily imply that a participant could not identify strategies for managing low mood or depression, but the similar durations spent on the open-response question page between participants who responded and those who did not suggests that the majority of those who did not respond had difficulty identifying strategies. the finding that nearly half of people may not be able to readily identify strategies to manage their mood is worrisome and provides a context for increasing rates of depression. these results also suggest that not enough is being done to educate people about ways that they can manage their low mood or depression. of the strategies identified by those who did complete the open- response question, evidence-based patient-initiated strategies for depression and low mood (e.g., exercise, social support) were mentioned frequently. approximately half of those who responded depression self-management to the open-response question mentioned evidence-based strategies. this suggests that people may gravitate towards those behaviours that, through their own experiences, have demonstrated their effectiveness in improving mood. these findings may also suggest that campaigns to promote these behaviours in other settings (e.g., public health, primary care) and for other purposes (e.g., exercise for weight management) have successfully brought attention to these most effective strategies. attitudes and beliefs towards patient-initiated strategies general attitudes and beliefs. attitudes and beliefs have been identified as important constructs in the prediction of actual engagement in health behaviours (e.g., carpenter, ). the results of the current study offer a better understanding of the attitudes and beliefs, within the framework of tpb (ajzen, ), that people have towards different patient-initiated strategies for depression and low mood. results also permit a comparison of attitudes and beliefs for different strategies. the findings suggest that people have generally positive attitudes towards all of the patient-initiated strategies investigated as part of this study with a composite score of . of a possible . even in the case of bibliotherapy, which was rated the lowest with regard to attitudes, the average rating was moderate at . of a possible . the degree to which people thought their significant others (i.e., family and friends) believed these strategies were effective at improving mood was also generally positive with a similar composite score of . of a possible . these findings are positive in that they demonstrate that people generally acknowledge that there are behaviours that exist to improve mood and that none of the evidence- based strategies investigated are entirely dismissed by the general population. furthermore, the subjective norm – significant other finding suggests that these behaviours are, generally speaking, socially accepted. depression self-management when compared with their own attitudes and their perceptions of their significant others attitudes, it appears that people think their physicians believe more strongly in patient-initiated strategies for depression and low mood than they do. while it is not surprising that people think their physicians believe in patient-initiated strategies, the discrepancies between how people feel about patient-initiated strategies, how they perceive their significant others feel, and their perceptions about how their physicians feel does provide a better context for interventions aimed at improving people’s attitudes, beliefs, and actual engagement in patient-initiated strategies for depression. perceived behavioural control toward the patient-initiated strategies investigated in the current study was also generally positive with an average rating of . of a possible . perception of ability to engage in these strategies appears to be comparable to attitudes toward the strategies as well as perceived attitudes of significant others towards the strategies. once again, however, it appears that the degree to which people think their physicians believe in the effectiveness of these strategies is greater than people’s perceived ability to engage in these strategies. finally, it was observed that intentions to engage in patient-initiated strategies for depression and low mood were significantly lower than all ratings of attitudes and beliefs, even after controlling for those participants who believed that these behaviours were not relevant to them due to a lack of depressive symptoms. the observed average rating of . of a possible for intentions still suggests positive intentions towards to these strategies in general, but ratings of intentions appear lower than other attitudes and beliefs towards these behaviours. comparisons among strategies. based on the results of the open-response question asking participants to identify strategies that they use to improve their mood where exercise and social support were mentioned frequently, it is not surprising that exercise and social support depression self-management were also rated by participants as the most effective among the strategies investigated in the current study. part of the reason why these strategies may be viewed so highly is their social acceptability and their multi-purpose use (e.g., exercise improves physical health, body image, mental health). social acceptance may be a particularly important variable in individuals’ perceptions of the effectiveness of strategies. if true effectiveness, as determined through lived experience or education, was the principle factor in people’s rating of the effectiveness of these strategies, medication and bibliotherapy would not have been rated significantly lower than all other strategies with regard to effectiveness and pet therapy would not have been rated so highly. social acceptance appears to play a significant role in attitudes towards these strategies. it is interesting to note that both psychoeducation and psychotherapy were rated highly in comparison to other strategies, although this may be a function of the discipline of study from which the majority of sample was recruited (i.e., psychology). the most conventional patient-initiated strategies for depression and low mood (i.e., exercise, social support, psychotherapy, and medication) were those with the highest ratings of subjective norms – significant others. it appears that people identify less conventional strategies (i.e., light therapy, symptom monitoring, and pet therapy) as being less accepted by their significant others than the more conventional strategies. bibliotherapy once again was rated particularly low suggesting a general sentiment of disapproval towards this patient-initiated strategy. of interest in these findings is that people seem to think their significant others believe medication is more effective, relatively speaking, than they do themselves. once again, this may be a function of most participants studying psychology, but it may also reveal a tendency for significant others to want their loved ones to receive help and reduce their depressive symptoms at all costs whereas the individuals themselves prefer less invasive interventions. depression self-management comparing the ratings of subjective norms – physicians suggest, a perceived preference of physicians towards more medically-oriented strategies such as exercise, medication, psychotherapy, and symptom monitoring was observed. although pet therapy was rated quite highly among individuals’ own perceptions of effectiveness in reducing depressive symptoms, people clearly acknowledge that physicians have a less favourable view of the effectiveness of this strategy. interestingly, it appears that people think their physicians have a relatively low perception of the effectiveness of social support, light therapy, and bibliotherapy. this finding may be due to the focus that physicians place on medically-oriented interventions to address mental health conditions like depression (e.g., mcpherson & armstrong, ). low ratings of subjective norms – physician for social support, light, therapy, and bibliotherapy may also be due to a lack of awareness regarding the evidence-based support for these strategies. less variability was observed in the ratings of perceived behavioural control towards the patient-initiated strategies than in the ratings of attitudes, subjective norms – significant others, and subjective norms – physician variables. this suggests that there was greater consensus among participants regarding the relative difficulty of each of the patient-initiated strategies. while people felt they had the greatest control over engaging in exercise, social support, and psychoeducation as ways to improve their mood, their perceived control over other strategies was generally less. furthermore, it appears that perceived behavioural control was greatly influenced by individuals’ attitude toward a particular strategy. both medication adherence and bibliotherapy, objectively speaking, are among the easier patient-initiated strategies to engage in (i.e., remembering to take medication regularly or reading a book and applying its contents) yet they were ranked as the most difficult strategies to engage in. regularly exercising would seem much more difficult to accomplish, yet it is ranked as the depression self-management easiest. these findings suggest that attitudes and other variables (e.g., social acceptability) likely have a greater influence on ratings of perceived behavioural control than the actual difficulty of engagement in the strategy. actual engagement the patient-initiated strategies for depression and low mood that individuals identified as having the highest intentions to engage in over a two- to three-week period were in fact the most frequently engaged in strategies. exercise and social support were by far the two behaviours most frequently engaged in. since participants were not asked if engagement in these behaviours was in direct response to low mood, it cannot be assumed that all of the participants who exercised or received social support in some form from friends or family did so with the intent of improving mood specifically. as mentioned previously, there are many other reasons why someone may exercise or engage in social behaviour. the same may be said for pet therapy, another frequently engaged in behaviour. patient-initiated strategies that do not have multiple purposes, like bibliotherapy, symptom monitoring, medication and light therapy were engaged in much less frequently. on average, participants attempted to engage in two patient- initiated strategies and % of individuals did not attempt any of the strategies. theory of planned behavior in the context of patient initiated strategies antecedent variables predicting intentions. correlation analyses revealed moderate to strong associations between all of tpb antecedent variables (i.e., attitudes, subjective norms – significant others, subjective norms – physician, perceived behavioural control) and between each of the antecedent variables and intentions. this finding suggests that the constructs themselves are meaningfully related to one another and provides support for the use of tpb in the context of the behaviours being investigated in the current study. the strongest associations depression self-management among antecedent variables themselves and between antecedent variables and intentions most often involved perceived behavioural control suggesting that this variable is among the most influential of tpb variables in this context. results of linear regression analyses do not support the hypothesis that all of the tpb antecedent variables significantly and uniquely predict intentions. globally speaking, perceived behavioural control was observed to be the most significant predictor of intentions to engage in patient-initiated strategies for depression and low mood. attitude was also identified as a unique predictor, but explained considerably less variance in intentions than did perceived behavioural control. analyses at the individual strategy level revealed that attitudes were occasionally a weak predictor of intentions, but perceived behavioural control was consistently the strongest predictor of intentions. subjective norms – significant others and subjective norms – physician were not identified as significant predictors of intentions at the composite level or for individual strategies, suggesting that in isolation subjective norms are relatively unimportant. while not all of tpb antecedent variables were shown, on their own, to be significant predictors of intentions to engage in patient-initiated strategies for depression and low mood, all four antecedent variables together explained more than double the variance in intentions than perceived behavioural control does alone. correlation analyses suggested that there were generally strong relationships between all of the antecedent variables and intentions. it stands to reason, therefore, that the model in its entirety provides a useful framework for understanding behaviour change in this context. together the antecedent variables explained, on average, more than a third of the variance in intentions. in some cases, the amount of variance explained was as high as %. this degree of explanation is considerable and comparable to many other contexts in which tpb is used to better understand behaviour change (e.g., boudreau & godin, ; depression self-management cooke & french, ; hyland, mclaughlin, boduszek, & prentice, ). it appears, therefore, that tpb is an appropriate model for investigating behaviour change, at least to the point of intentions to engage in behaviour, in the context of patient-initiated strategies for depression and low mood. intentions predicting actual engagement. the results of logistic regression analyses suggested that intentions were a significant and meaningful predictor of actual engagement for only two patient-initiated strategies for depression and low mood investigated as part of this study. a number of explanations are possible for the weak relationship observed between intentions and actual behaviour. the duration of the period between rating intentions and recording actual engagement (i.e., two to three weeks) and the lack of specificity of the actual behaviour to be engaged in for most strategies may have contributed to this weak relationship. it is also possible that using only one question (i.e., one indicator) for intentions resulted in less than ideal psychometric characteristics resulting in the construct of intentions not being fully measured. while these methodological considerations may have contributed to the weak relationship observed, it is also possible that a moderating variable exists between intentions and actual engagement. unlike physical ailments (e.g., healing limbs, obesity) or conditions that have self-evident interventions (e.g., rehabilitation, dieting), the appreciation of mental health conditions like low mood or depression is highly subjective. while depressive symptoms measures may indicate a heightened level of depressive symptoms, an individual may or may not identify himself or herself as having low mood. this phenomenon was observed in the case of the current study. participants who indicated that they had low intentions to engage in patient-initiated strategies for depression and low mood because they did not have depression or low mood, obtained scores depression self-management on the phq- depressive symptoms measure that were comparable to that of participants who did not identified this as a reason for having low intentions or those participants who rated intentions high. although the survey of the current study did not collect information regarding participants’ subjective experience of mood (i.e., as opposed to specific depressive symptoms) at the time of the study, it is fair to assume there may be some discrepancy between ratings of depressive symptoms as measured by the phq- and the subjective experience of mood (i.e., happy or sad) of the participants. this discrepancy becomes an extraneous variable in the analyses of the current study and may have a significant impact on the ability of intentions to predict actual engagement. after all, an individual who subjectively does not identify as having low mood at the time he or she rates intentions or at any time throughout the period prior to follow-up will be less likely to engage in patient-initiated strategies for depression and low mood. this illustrates the possibility of a moderating variable related to the perceived relevance of the behaviour (e.g., subjective experience of mood). affect in the theory of planned behavior model impact of affect on theory of planned behavior variables. correlation analyses suggest that level of depressive symptoms is not associated in a meaningful way with any of tpb antecedent variables or with intentions to engage in patient-initiated strategies for depression and low mood. results of mixed model anova analyses extend on this finding and suggest that qualitative levels of depressive symptoms (i.e., minimal, mild, moderate, moderately severe to severe), as determined by the phq- cut scores, do not have a global impact on tpb antecedent variables or intentions in this context. although level of depressive symptoms appears to have an isolated impact on some variables in the context of individual strategies (i.e., social support), the effect is weak and therefore has little meaningful impact. in general, and in most cases at the depression self-management individual strategy level, these findings do not support the hypothesis that depressive symptoms modify the ratings of tpb antecedent variables or intentions. this finding is surprising since it was expected that mood, one aspect of which was measured by the depressive symptoms measure, would influence the antecedents of behaviour change as has been shown in previous research (catellier & yang, ). while the findings of the current study reflect an extreme aspect of affect in that it measures mood difficulties, the findings do appear to be in disagreement with ajzen’s ( ) claim that prior affect would be incorporated in the ratings of tpb antecedent variables. given that tpb model appears to function as well as it does in the context of patient- initiated strategies for depression and low mood, it is unlikely that the lack of influence that depression has on the model, as demonstrated in the findings of the current study, is due to psychometric inconsistencies. it is possible that the depressive symptoms measure failed to capture a complete indicator of affect. still, post-hoc analyses using just the second item of the phq- questionnaire (i.e., “over the last weeks, how often have you been feeling down, depressed, or hopeless?), which at face value appears to address affect in a direct manner, did not reveal any significant interactions with tpb antecedent variables. since conventional, and scientific (e.g., fishbein, ; smith, ), wisdom suggests that low mood and depressive symptoms have a significant, negative impact on attitude, motivation, and ability to complete tasks, ajzen’s ( ) assumption that affect would impact the variables in his theoretical model was sound; however, since level of depressive symptoms was not found to significantly impact these variables and, therefore, is not incorporated directly into tpb model as it is currently laid out, it may be concluded that mood difficulties must be added as a separate variable in the model. depression self-management although tpb is one of the most comprehensive behaviour change models, it never accounts for the all of the variability in intentions or in actual engagement in any behaviour. this is also the case in the context of patient-initiated strategies for depression and low mood where the model accounts for, at most, % of the variance in intentions and significantly less for actual engagement. this suggests that variables outside of the model account for remaining variability in intentions and actual engagement. among the possible exterior variables, prior affect, including depressive symptoms, is likely among those that would explain the greatest variance in intentions and actual engagement. as discussed previously, since tpb model is based on beliefs, attitudes, and perceptions, a subjective measure of affect is likely to be best. while the findings of the current study may conclude that mood difficulties must be added as a separate variable within tpb model, there is little indication as to where this variable may be best situated within the model. in the case of intentions, one would expect that people who identify themselves as having lower mood or being more depressed would rate intentions to engage in patient-initiated strategies for depression as greater since the strategies are more relevant to them. while a possible discrepancy between participants’ rating of depressive symptoms on the phq- and their subjective rating of mood, as previously discussed, may have diluted this effect, it is reasonable to assume that scores on the phq- would, at the very least, have been a proxy to participants’ subjective affect thus producing some effect on ratings of intentions. however, this was not observed. while it can be argued that individuals with greater levels of depressive symptoms would be expected to rate intentions for these patient-initiated strategies high, due to their increased relevance, it can also be argued that heightened depressive symptoms will result in lower ratings of intentions due to increased apathy, difficulties with concentration, and other depression self-management symptoms of depression that would make it difficult for an individual to actively engage in any behaviour. if this were the case, then the relevance of the patient-initiated strategies to some depressed individuals would increase ratings of intentions, the depressive symptoms impairing behavioural activation would decrease ratings of intentions for other depressed individuals, and the net effect would be zero. while there is no definitive way of addressing this question in the current study, qualitative data collected does suggest that very few participants identified being “too depressed” as a reason for having low intentions to engage in patient-initiated strategies for depression and low mood. the findings point towards the addition of two new constructs within tpb in this context. the first, as previously mentioned, is level of mood difficulties. while some research suggests that general affect, and negative affect in particular, has an effect on attitudes (catellier & yang, ), results of the current study suggest that level of mood difficulties does not appear to be captured any more within the construct of intentions than it is within the antecedent variables. level of mood difficulties or subjective affect, therefore, may be introduced as a separate variable at some location within the overall model. the second additional variable is the perceived relevance of the behaviour being examined. as with all mental health issues, the problem itself is subjective and, therefore, “problem appreciation” is required in order for a behaviour, such as those related to patient-initiated strategies, to be relevant to the individual. only when a behaviour is relevant to an individual can tpb be applied. impact of affect on actual engagement. findings of chi square analyses support the hypothesis that level of depressive symptoms significantly impacts whether or not an individual actually engages in patient-initiated strategies in three of the nine patient-initiated strategies. participants with greater levels of depressive symptoms were more likely to engage in depression self-management medication adherence, educational, and psychotherapy than participants with lower levels of depressive symptoms. this pattern was not observed, however, in the case of the other patient- initiated strategies where participants with differing levels of depressive symptoms were equally likely to engage in the strategies. interestingly, both medication adherence and psychotherapy are strategies that are likely to be prescribed by a physician. under these circumstances, an individual given these prescriptions is arguably more likely to acknowledge they have a problem with low mood or depression. if this is true, it lends support to the suggestion that problem appreciation has a greater influence on tpb variables, including actual engagement, than an objective measure of symptoms such as the phq- . it is also interesting to note that in five of the nine patient-initiated strategies for depression and low mood investigated, participants with minimal and mild levels of depressive symptoms were equally likely to engage in these strategies as were participants who were identified as being in the moderate or moderately severe to severe range of depressive symptoms. this suggests that for the majority of patient-initiated strategies, persons with healthy mood also routinely engage in these behaviours. in some cases, engagement in these behaviours may be with the expressed purpose of maintaining healthy mood. in other cases, engagement in these strategies (e.g., exercise, socializing) may be for other purposes but with the added and unintentional benefit of maintaining mood. whatever the case, it is important to consider that these patient-initiated strategies are relevant to everyone, medication adherence and psychotherapy seeking excluded, regardless of one’s the level of depressive symptoms. moderating effect of affect. the results of the current study do not support the hypothesis that level of depressive symptoms moderates the relationship between intentions and actual engagement for the patient-initiated strategies for depression and low mood investigated depression self-management in this study. this suggests that intentions is no better a predictor of actual engagement for these strategies in persons with high levels of depressive symptoms than it is in persons with low levels of depressive symptoms. while ajzen did not discuss the impact of affect on the interaction between variables, these analyses were intended to examine the effect of depressive symptoms on the interaction between intentions and actual behaviour. the findings suggest that level of depressive symptoms does not modify this relationship. this may be due to the fact that level of depressive symptoms as measured in the current study, using the phq- , may only be a proxy of a person’s “problem appreciation” and not represent the true perceived relevance of patient-initiated strategies to individual. also, as discussed previously, with heightened levels of depressive symptoms, individuals are less likely to have the motivation to engage in any behaviour, including those related to patient-initiated strategies for depression and low mood. in the current study, both of these extraneous variables may be working against each other in the case of moderating relationships between intentions and actual engagement, masking any effect that either has on the relationship. introduction of these two additional variables into tpb would provide a better understanding of the model in the context of depression and these behaviours. knowledge translation and transfer educational interventions impact of educational interventions on antecedent variables. positive educational intervention. the results of the current study partially support the hypothesis that a positive educational intervention using knowledge translation and knowledge transfer theory principles increases ratings of tpb antecedent variables. globally speaking, an educational intervention such as that used in the current study appears to improve attitudes and subjective norms – physicians towards patient-initiated strategies for depression and low mood. these findings depression self-management support the hypothesis. perceived behavioural control and subjective norms – significant others towards these strategies did not appear to be affected by the educational intervention leaving the hypothesis only partially supported. individual strategy analyses suggest that the educational intervention had isolated effects on all of tpb variables with the exception of perceived behavioural control. an examination of effect sizes suggests that attitudes and subjective norms – physicians are the antecedent variables most impacted by the educational intervention. in the case of education where attitudes, subjective norms – significant others, and subjective norms – physician were all affected, the two subjective norms variables were impacted to a lesser degree than was attitudes. results of the current study suggest that one’s perceptions of others’ beliefs toward a behaviour (i.e., subjective norms) are more difficult to modify than one’s own attitudes towards a behaviour. this makes sense since subjective norms are external to the individual and separate from their experiences, including educational interventions. after having received an educational intervention, one may change their attitude towards a behaviour but that does not mean that their significant others, who likely do not have the benefit of the educational intervention, will also change their attitudes towards the behaviour. an educational intervention is also more likely to change attitudes and beliefs about a behaviour than perceived control towards a behaviour. speaking more generally, it is clear that attitudes and beliefs for some patient-initiated strategies for depression and low mood are more easily impacted by educational interventions than others. in the case of the current study, attitudes and beliefs towards education as a patient-initiated strategy improved significantly more than attitudes and beliefs towards psychotherapy, for example. the findings also suggest that a dosage effect likely exists for educational depression self-management interventions. the educational intervention in the present study was a one-time exposure to educational material using one modality (i.e., internet-based text reading). multiple exposures to the same knowledge translation and knowledge transfer theory-based information using multiple modalities (e.g., reading, video, and lecture) is likely to have a greater impact on attitudes and beliefs toward these patient-initiated strategies. the present study did not reveal significant overall changes in subjective norms – significant others and perceived behavioural control, nor were significant changes observed in all attitudes and beliefs related to all of the individual patient-initiated strategies. however, it can be argued that since an effect was observed in the case of the education strategy, more intensive educational interventions (i.e., greater exposure, multiple modalities) aimed at improving attitudes and beliefs towards other patient-initiated strategies for depression and low mood may improve all of the tpb antecedent variables, to varying degrees, for all of the patient-initiated strategies for depression and low mood, to varying degrees. while all attempts were made to improve ratings of all of tpb antecedent variables equally, or decrease ratings in the case of pet therapy, with the knowledge translation and knowledge transfer theory-based educational intervention, it is likely that any one package of information influences one or two of the antecedent variables more than the others. for example, the information package included as part of the educational intervention for the current study included endorsement by various physician professional organizations (e.g., canadian medical association, canadian psychiatric association). this piece of information is more likely to impact subjective norms – physicians than subjective norms – significant others. indeed, results revealed a greater increase in subjective norms – physicians than in subjective norms – significant others. had the educational intervention included information that spoke to the depression self-management immense popularity among various patient groups for a particular patient-initiated strategy for depression and low mood, it is fair to assume that a greater improvement in scores of subjective norms – significant others would result. this finding suggests that educational interventions can be tailored to meet the educational needs of the audience. in the case of patient-initiated strategies for depression and low mood, the focus of educational interventions should be on perceived behavioural control, apparently the most difficult tpb antecedent variable to change but also the most important in this context. negative educational intervention. while only one of the educational interventions was aimed at lowering attitudes and beliefs towards a strategy for managing depression and low mood (i.e., pet therapy), the effect observed was stronger than that observed in any of the positive educational interventions. attitudes and subjective norms – physicians for pet therapy were significantly lowered following a negative educational intervention and were lowered to a greater degree, based on effect size, than the positive educational intervention was able to achieve on any of the antecedent variables for patient-initiated strategies for depression and low mood. although this intervention was only attempted in one case, this finding suggests that a negative educational intervention (i.e., one that dissuades a particular behaviour) based on knowledge translation and knowledge transfer theory appears to be particularly effective at changing attitudes and beliefs about a behaviour. impact of educational interventions on intentions. global intentions to engage in patient-initiated strategies for depression and low mood do not appear to be influenced by knowledge translation and knowledge transfer theory-based educational interventions. the findings do not support the hypothesis that a knowledge translation and knowledge transfer theory-based educational intervention would improve ratings of intentions to engage in these depression self-management strategies. in the case of pet therapy, the negative educational intervention failed to reduce ratings of intentions to engage in the behaviour. as with the antecedent variables, this may be due to a dosage effect or the single modality in which the educational information was presented. although it was hypothesized that the educational interventions would impact intentions to engage in patient-initiated strategies for depression and low mood, tpb suggests that intentions flows from attitudes and beliefs and any impact on intentions would likely be less than that observed in the case of antecedent variables. changes in attitudes and beliefs towards a behaviour are believed to bring about changes in intentions. intentions are not the direct target of educational interventions since the construct of intentions is more difficult to operationalize than attitudes or beliefs. given that the educational intervention had only a weak to moderate impact on ratings of attitudes and subjective norms – physicians and no impact whatsoever on perceived behavioural control, the most significant predictor of intentions, it is not surprising that intentions were not significantly impacted by the educational intervention. it might be concluded, therefore, that any educational intervention would have a trickle down effect through tpb. because an educational intervention directly influences attitudes and beliefs (i.e., the antecedent variables), it can be expected that these variables would be impacted the most. any changes in these antecedent variables will impact intentions, but likely to a lesser degree due to the indirect relationship between the educational intervention and intentions. impact of educational interventions on actual engagement. actual engagement in patient-initiated strategies for depression and low mood was not significantly impacted by the educational intervention based on knowledge translation and knowledge transfer principles. this finding does not support the hypothesis that an educational intervention such as this would improve frequency of engagement in these strategies. as discussed previously, this finding may depression self-management be the result of the minimal dosage of educational intervention used in the present study (i.e., one time exposure to one modality). furthermore, the educational intervention used attempted to target all attitudes and beliefs, but did little to influence perceived behavioural control, the greatest predictor of intentions, which subsequently would have influenced actual engagement. the results of the actual engagement analyses and those of analyses involving other variables in tpb suggest that an educational intervention has a varied impact on the different variables of the model. an educational intervention such as that used in this study clearly has the greatest impact on the antecedent variables of tpb. this is no surprise since the information presented in the educational interventions was tailored to have an effect on these variables. the impact on intentions to engage in patient-initiated strategies for depression and low mood may be directly influenced by the educational intervention, but, in accordance with theory, is more likely to be influenced by changes in the antecedent variables. finally, actual engagement appears to be influenced little by the intervention itself, but is likely to be most influenced by changes in intentions. in this way, as previously mentioned, the educational intervention appears to have a trickle-down effect from antecedent variables, to intentions, and finally to actual engagement. in order for an educational intervention of this nature to have a greater impact on intentions and actual engagement, it must carefully target those antecedent variables with the greatest predictive ability on intentions (i.e., perceived behavioural control) and must do so through multiple modalities and multiple exposures (i.e., increased dosage). theoretical implications and applications a number of theoretical implications and applications are suggested based on the findings of the current study. from suggested modifications to tpb model and the theoretical framework of knowledge translation, knowledge transfer, and k* to the practical applications at the level depression self-management of primary health care and public health, the findings of this study will inform future research and practice in this field. theoretical implications tpb was demonstrated to be a useful theoretical framework in which to understand behaviour change in the context of patient-initiated strategies for depression and low mood. while the current study suggests the addition of two variables (i.e., level of mood difficulty, problem appreciation) in this context, this model of behaviour change can be used in future research on this topic to investigate more precisely the influence of attitudes and beliefs on intentions and actual engagement in patient-initiated strategies. the findings of the current study also suggest that k*, and knowledge translation and knowledge transfer specifically, on their own are not sufficient for understanding of the impact of the passage of knowledge on behaviour. the hybrid model proposed as part of the current study (figure ) integrates knowledge translation and knowledge transfer principles and tpb to provide a more full conceptualization of the flow of knowledge from one entity to another in a way that changes behaviour in the recipient. as behaviour change is ultimately the purpose of k* interventions, k* theory would benefit greatly from implications of this hybrid model. need for educational interventions on self-management the finding that half of the participants in this study were unable to readily identify strategies for managing mood and various evidence-based patient-initiated strategies for depression were mentioned by less than one quarter of the participants highlights the importance of having both a better understanding of behaviour change in this context and effective educational interventions to improve engagement in these behaviours. some of the most effective patient-initiated strategies for depression (e.g., bibliotherapy, medication) appear to be depression self-management viewed quite poorly by the female undergraduate population. although the sample does not adequately represent the general population, it can be said that given the effectiveness of these strategies, more should be done to elevate their status among other patient-initiated strategies. it is important to consider that the patient-initiated strategies investigated here are relevant to everyone, medication adherence and psychotherapy excluded, regardless of one’s level of depressive symptoms. therefore, mass interventions aimed at improving attitudes, beliefs, and intentions toward these strategies are appropriate and are likely to help reduce the burden of depression in general. educational interventions the findings from the present study suggest that efforts to improve intentions to engage in behaviour related to patient-initiated strategies for depression and low mood should focus primarily on enabling individuals (i.e., perceived behavioural control) and improving perceptions of individuals’ ability to engage in specific behaviours. whether through activity scheduling-type exercises or providing patients with the necessary resources to engage in the behaviour, health care providers must take a more active role in encouraging the use of patient- initiated strategies. these findings suggest a change in mindset among health care providers. patient-initiated strategies, or self-management strategies, require the intervention of health care providers and public health resources in order to be adopted by patients and the general population. these strategies cannot be ignored by the health care system under the impression that patients left to their own devices will engage in these strategies willingly and effectively in response to mood difficulties. in essence, patient-initiated strategies must not be patient-alone strategies. depression self-management the findings suggest that an individual’s level of depressive symptoms need not be a consideration when applying educational interventions aimed at changing behaviour related to patient-initiated strategies for depression and low mood. therefore, in clinical settings, any tpb interventions aimed at improving actual engagement in patient-initiated strategies do not need to be modified based on the level of depressive symptoms of the patient. this has significant implications for public health interventions in that it supports the use of one-size-fits-all interventions for increasing the frequency of behaviour that will improve mood. these findings do suggest, however, that it is important to understand an individual’s subjective measure of their mood than to rely on measures of depressive symptoms when considering the introduction of patient-initiated strategies for depression and low mood. those patients who subjectively feel they have a positive mood, despite qualitative measures indicating otherwise, are unlikely to engage in patient-initiated strategies for depression and low mood regardless of the type of educational intervention applied. findings encourage clinicians and public health educators to use multiple exposures and a variety of modalities to convey knowledge translation and knowledge transfer theory-based information to the general population for the purpose of changing attitudes and beliefs towards patient-initiated strategies for depression and low mood. as observed in the present study, a single-modality, single-exposure educational intervention was effective at changing attitudes and beliefs towards these strategies in some cases. the change, however, was to a limited degree and, due to the trickle down nature of influence that an educational intervention appears to have on the variables in tpb model, had little to no impact on intentions to engage in or actual engagement in the patient-initiated strategies themselves. furthermore, those developing and providing educational interventions may wish to incorporate negative education aimed at depression self-management dissuading people from using unhealthy strategies for depression and low mood (e.g., alcoholism, drug use, avoidance). when developing information packages for educational intervention, interveners would be wise to use evidence-based information tailored to the targeted tpb antecedent variables, perceived behavioural control most notably. limitations survey methods one of the greatest limitations of the current study is the survey-based nature of data collection and all of the inherent difficulties associated with this approach. a significant challenge associated with this method of data collection is the inability to control for extraneous variables (e.g., participant life events, media exposure to self-management topics) during the data collection process any of which may have produced an effect assumed to be the result of the study intervention. the vast majority of the participants were students who were required to participate in a research project as part of their coursework. the degree of attention and concentration among participants, although controlled partially with the application of a minimal time for completion criterion, was largely unknown and therefore random responding and inattentiveness to the interventions was possible. this type of responding may have masked any true effects that the interventions may have had. it may have also been the case that certain participants chose to engage in additional research on patient-initiated strategies for depression and low mood prior to the study or during the study. not knowing how participants approached the survey or the intervention itself is likely to have introduced undesirable variability in the data, either masking significant results (i.e, type error) or exaggerating differences that were in fact meaningless (i.e., type error). future research in this field may wish to exert more control over data collection and intervention through in-person participation. while these specific depression self-management limitations may have introduced some unwanted variability in the data, the size of the sample and the effect sizes observed suggest that the findings are relatively robust. unknown participant characteristics in an effort to keep the survey to a manageable length, a number of participant characteristics were left unknown. characteristics that would have provided a better understanding of the sample, and consequently a better understanding of the generalizability of the study findings, included socio-economic status, field of study (i.e., psychology or linguistics), cultural background, mother tongue, and reading level. future studies may wish to focus greater attention on these demographic characteristics. sample composition although the sample size was adequate and provided enough power in analyses to reveal meaningfully significant results, the composition of the sample was less than ideal. the sample was overwhelmingly female undergraduate students. in addition to causing difficulties with generalizability to men, the sample also makes it difficult to generalize the results to less educated, older, and likely lower socio-economic populations. given the institutional setting in which the survey and intervention were administered, the findings of the current study are more akin to public health or organizational health applications than primary care or tertiary care applications. although some of the participants were recruited through general practitioners’ offices, their numbers were not sufficient to conduct individual analyses. the generalizability is also limited to individuals with access to a computer and an internet connection. suggestions for future direction would include focusing recruitment efforts to the general population as well as more specific populations such as general practitioners’ offices and tertiary care settings. depression self-management theory of planned behavior variable measurement while tpb questions created for the purpose of this study clearly had face validity, it is reasonable to assume that some of the true variability in attitudes, subjective norms – significant others, subjective norms – physician, and perceived behavioural control for the patient-initiated strategies was not fully captured by the individual questions used. as a result, the overall validity of tpb model presented with these questions is not ideal and should be examined with some caution. tpb questions used in the current study were constructed in accordance with recommended guidelines (francis et al, ). in an effort to manage the length of the survey, multiple questions for each of tpb variables (e.g., attitudes, subjective norms – significant others, intentions) were not used in the current study. doing so would have been ideal in that it would have provided multiple indicators for each construct and, therefore, provided a more accurate measurement of the construct. it is recommended that future research in this field use multiple indicators for each construct. common method variance may also be a limitation to the current study, particularly in the case of tpb questions. as participants’ familiarity with tpb questions increased, their responses to those questions may have changed. this bias is most notable and problematic between the baseline and post-intervention tpb questions. although this bias is certainly present to some degree, its effects were likely mitigated through the use of a sham intervention. variability between strategies the findings of this study suggest that the behaviour itself (e.g., exercising, socializing) explains more of the variability in tpb factors than the stated purpose of a behaviour (e.g., to improve mood). not all patient-initiated strategies can be grouped together in an investigation of tpb model due to the degree of variability that exists between the attitudes and beliefs related to depression self-management these individual strategies. a thorough understanding of tpb with regard to each of these strategies would better achieved by examining each strategy in turn. this may be achieved through identifying specific behaviours related to each of the patient-initiated strategies and using multiples indicators associated with each of tpb constructs (i.e., attitudes, subjective norms, perceived behavioural control, intentions). furthermore, more precise measurement of actual engagement would also provide a more fulsome investigation of the model. in addition to frequency, future investigations involving actual engagement might also include duration, intensity, and experience. depressive symptoms measurement only one depressive symptoms measure was used in the current study and no collateral information was used to determine participants’ level of depressive symptoms (e.g., clinical interview, chart review, etc.). while the phq- has been demonstrated to effectively identify depressive symptoms, it is not perfectly sensitive or specific and the resulting variability may have impacted the analyses involving depressive symptoms. a lack of specificity may have resulted in false positives or false negatives and, therefore, analyses comparing groups with varying levels of depressive symptoms may have been less precise. furthermore, the current study did not provide a subjective rating of mood or depressive symptoms. given the subjective nature of tpb, a subjective rating of mood, depressive symptoms, and affect in general may have been more appropriate. finally, different types of affect and concomitant variables were not considered in the current study. future studies may wish to utilize multiple sources, including participants’ subjective experience of affect, to determine level of depressive symptoms and general affect. depression self-management open-response question while the current study attempted to gain an understanding of participants’ knowledge of patient-initiated strategies for depression low mood prior to the baseline and intervention phases of part of the study using an open-response question, this question failed to provide much needed information regarding which strategies are currently used by people. the results revealed the strategies that people most often identify but did not identify those strategies that people actually use when they experience low mood or depression. observational methods would be a more reliable method of uncovering the types and frequency of these behaviours. understanding which patient-initiated strategies for depression and low mood are used by the general population and how would provide a better context for applying educational interventions to improve engagement in the most effective strategies. type i error a large number of analyses were conducted as part of this study and no corrections to p values were made. as explained previously, the p value remained at . due to the exploratory nature of the investigation. furthermore, many of the significant results were significant at the p < . or the p < . levels and would likely have remained significant even if a bonferroni or other correction had been applied. that being said, it is, of course, possible that type i error has occurred somewhere within the findings of the current study. this is a limitation of the current study and can only be remedied by replication. conclusion patient-initiated strategies for self-management of depression and low mood offer effective intervention options for individuals experiencing low mood or depression and have the potential to address the limited capacity of the primary care system to manage the growing depression self-management burden of depression and low mood (ferrari et al., ; jorm et al., ; richards, ). the findings of the current study suggest that tpb model is an appropriate theoretical framework through which behaviour change in the context of these patient-initiated strategies can be investigated. perceived behaviour control is the greatest predictor of intentions to engage in these strategies and attitudes explains a smaller portion of the variance in intentions. in some cases, intentions appear to significantly predict actual engagement as expected in the model. level of depressive symptoms, an indicator of affect, was not found to directly impact any of tpb variables yet did impact actual engagement in some of the patient-initiated strategies. since it is unclear how level of mood difficulty fits into the overall model, two additional variables are suggested to compliment the core tpb variables in this context. the first, level of mood difficulty, is meant to control for the impact of depressive symptoms on the model. it is unclear where a mood difficulty variable may fit in the larger model, but it is expected that it may moderate some of the relationships between tpb variables in this context. the second additional variable is specific to the context of patient-initiated strategies for mental disorders. “problem appreciation” quantifies the degree to which an individual with mental health challenges acknowledges their difficulties and, therefore, perceives a patient-initiated strategy as relevant to their current condition. the more relevant a particular behaviour is to an individual, the better tpb explains the relationship between their attitudes and beliefs and their intentions to engage in the behaviour. whether integrated as a component of a stepped-care model or simply added as adjunct treatment to practice as usual, educational interventions aimed at improving attitudes, beliefs, intentions, and engagement in patient-initiated strategies are an integral part of any campaign moving forward. the findings of the current study provide a better understanding of behaviour depression self-management change in the context of these strategies and they suggest that level of depressive symptoms and affect in general need not be a significant consideration in an educational intervention or behaviour change in general. the findings do suggest, however, that a multi-modal, multiple- exposure educational intervention will have the greatest impact on beliefs and attitudes towards these strategies, which, in turn, will have a positive trickle down effect on intentions to engage in these strategies and, ultimately, actual engagement. the greatest focus should be placed on changing self-efficacy (i.e., perceived behavioural control) and attitudes related to these patient- initiated strategies for depression and low mood. the findings of the current study suggest that educational interventions based on knowledge translation and knowledge transfer theory have the potential, with additional modalities and greater exposure, to significantly improve attitudes and beliefs related to 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( ). scale of measurement of “satisfaction” with medical care: modifications in content, format and scoring. medical care, ( ), - . depression self-management appendix a – k* information for each patient-initiated treatment for depression introduction to strategies for managing sad or depressed mood. there are many ways that a person can improve sad or depressed mood. the following strategies have been shown through scientific research to benefit most people suffering from low mood or depression. whether or not you are dealing with sad mood right now, we would like to know your opinions about each of the following eight strategies for dealing with sad or low mood. please answer all of the questions even if you feel a certain strategy does not currently apply to you. click forward to continue. bibliotherapy strategy # : self-help books reading a self-help book for depression has been shown in scientific research to significantly improve mood. the research: in a primary care study patients were each assigned to one of two groups. the first group received treatment as usual from their physician (commonly antidepressant medication). the second group was simply asked to read the book feeling good: the new mood therapy by dr. david burns. both groups improved equally well and those who read the book improved without taking any medication (naylor, ). how it works: a good self-help book is easy to understand. it will provide information about depression and help you understand that you are not alone in your struggle with low mood. self-help books also describe simple ways to change your thoughts, behaviours and emotions and all at your own pace! who recommends self-help books: the use of self-help books is recommended by the canadian psychiatric association in its current clinical practice guidelines for depression and low mood (cpa, ). (sources) exercise strategy # : excercise light, regular physical exercise can improve mood and functioning. depression self-management the research: in a british studied patients with depression. half of the patients were placed in a group that completed minutes of walking each day for a period of days. the other group did minutes of relaxation exercises each day for days. in the end, three times more patients in the walking group had significant improvement in their mood than did patients in the relaxation group. how it works: there are many ways that exercise improves your mood. for example, exercise releases chemicals in your brain that in turn trigger the parts of your brain associated with good mood. exercise improves body image and physical health, which improves self- esteem and mood. exercise is a great stress reliever and less stress means better mood. who recommends exercise: a wide variety of professional healthcare organizations recommend exercise as a way of improving mood. most notably the canadian network for mood and anxiety treatment (canmat, ) and the canadian psychiatric association (cpa, ) both recommend exercise as treatment for depression. (sources) light strategy # : light full-spectrum light (i.e., light from the sun or a "light therapy" lamp) can improve mood and functioning. the research: one study placed patients with non-seasonal depression into two groups. one group received one hour of bright light each morning for five weeks. the other group received one hour of low light each morning. the bright light group had significantly improved mood following the study. how it works: natural light and light from light-therapy works in two ways to improve mood. firstly, it increases the amount of neurotransmitters (brain chemicals) associated with heightened mood (e.g., serotonin, dopamine). secondly, when timed appropriately, every morning for example, light therapy helps sync your body’s rhythm (circadian rhythm) with the your sleep-wake cycle. who recommends light therapy: the canadian network for mood and anxiety treatment (canmat, ) recommends light therapy for people who experience depression primarily in the winter months. the american psychiatric association recommends light therapy for seasonal as well as nonseasonal depression. (sources) regular medication depression self-management strategy # - taking prescribed medication as directed if your physician has prescribed medication to help you manage your low mood, taking that medication regularly as directed can significantly improve your mood. the research: in a study published in the journal of the american medical association, it was discovered that the patients who took their antidepressant medication regularly were % more likely to feel that the medication is helping their mood than those who did not take their medication regularly. seventy-five percent of individuals who took their medication regularly had a % or greater reduction in their depressive symptoms! less than half of those who did not take their medication regularly had the increase in mood. how it works: some of the most common medications prescribed for low mood and depression require time for the drug to build up in the body before it has the desired effect. taking medication regularly allows the drug to work the way it is intended. following your doctor’s directions for taking medication is important. who recommends taking medication as directed: all professional healthcare organizations recommend taking medications as prescribed including the canadian medical association and the canadian psychiatric association (cpa, ). (sources) psychoeducation strategy # : knowing more about depression just knowing more about depression can help reduce the symptoms of depression. the research: one hundred and sixty six individuals with depression were asked to simply read a webpage (like this one) that provided information about depression. those individuals who learned more about depression saw a significant reduction in depressive symptoms. furthermore, people who learned more about depression were more likely to make recoveries than those who had not learned more. how it works: knowing more about what low mood and depression look like can help you identify it when it happens to you and get help sooner. learning about how depression is treated might help you feel more comfortable seeking help. knowing more about what causes low mood and depression can help you take steps to maintain a positive mood. who recommends education: among the many organizations that recommend education for people experiencing low mood or depression, the college of family physicians of canada (cfpc, ) and the canadian network for mood and anxiety treatment (canmat, ) also recommend education. depression self-management (sources) psychotherapy strategy # : psychotherapy (talk therapy) psychotherapy or talk therapy is considered to be one of the most effective treatments for low mood or depression. the research: cognitive behaviour therapy (cbt) is widely considered to be a first-line, non-medication treatment for depression. in one study, primary care patients with depression were randomly assigned to one of two groups. the first group received cbt from a qualified mental health professional in addition to care as usual from their physician. they second group simply received care as usual from their physician. in addition to showing a greater reduction in depressive symptoms, the patients that received cbt were also more likely to be without depression and medication free two years after finishing therapy. in fact, patients that did not complete cbt were four times more likely to relapse. how it works: through weekly -hour sessions with a qualified professional, cbt teaches skills that help one change their behaviour and the way they think. cbt has been shown to actually change the way parts of the brain work meaning the effects of cbt last long after therapy has finished. who recommends seeking psychotherapy: the canadian network for mood and anxiety treatment (canmat, ) recommends psychotherapy for depression as does the canadian psychiatric association (cpa, ). (sources) being social strategy # : being social maintaining healthy relationships with friends and family and starting new relationships can be a great way to improve your mood. the research: in a study of over , norwegians, researchers found that regardless of age or gender, those individuals with greater social support had healthier moods. social support in this study included emotional support or more tangible sources of support (e.g., help at home). how it works: when our mood is low, some people isolate ourselves, remove themselves from the company of others. this only serves to worsen one’s mood with feeling of loneliness or rejection. going out with friends to do something fun, even if you don’t feel like it, will boost depression self-management your mood, which will help you to think more positively. friends and family will also help encourage you and make you feel better about yourself. who recommends visiting with friends: in their clinical practice guidelines for the treatment of depression, the college of family physicians of canada (cfpc, ) and the national collaborating centre for mental health - national institute for health and clinical excellence (nice, ) recommend increased social support and social activities to help improve mood. (sources) symptom monitoring strategy # : symptom monitoring monitoring and being aware of your depressive symptoms can actually help increase your mood. the research: in a study of depressed patients who were prescribed antidepressant medication by the physician, those that took part in a relapse prevention program that included routine monitoring of depressive symptoms saw a greater increase in mood than those who did not monitor symptoms. those patients who monitored their symptoms were also more likely to follow their physician’s directions for treatment. how it works: regularly monitoring your symptoms of low mood or depression helps you recognize when you have made improvements and helps you identify strategies or experiences that have helped improve your mood. monitoring symptoms also helps you recognize when your mood is getting lower allowing you to intervene sooner. who recommends symptom monitoring: the national institute for health and clinical excellence (nice, ) recommends symptom monitoring in its latest clinical practice guidelines for the treatment of depression and low mood. (sources) depression self-management appendix b – pet therapy negative educational intervention while there are a number of self-help strategies that are effective in managing depression and sad mood, there are other strategies that are not effective in improving mood. these unhelpful strategies have been shown, through scientific research, to be of no to little benefit to those who have used them. whether or not you are dealing with sad mood right now, we would like to know your opinions about the last strategy below. please answer all of the questions below even if you feel a certain strategy does not currently apply to you. pet therapy owning a pet or interacting with therapy animals has not been shown in scientific research to significantly improve mood. the research: in a hospital setting, patients with depression or low mood were each randomly assigned to one of two groups. the first group participated in five days of pet therapy. the second group participated in an unrelated program. those who participated in pet therapy had no change in their level of depressive symptoms. (zisselman, rovner, shmuely, & ferrie, ). why it doesn’t work: it was thought that pets or interactions with animals offer some of the same benefits as human socializing; however, this is not the case. animals do not offer the practical support that humans offer (for example, helping out with chores, providing transportation) and they do not offer the compassion and emotional understanding of humans. no recommendations: the use of pet therapy is not recommended by the canadian psychiatric association (cpa ), the canadian network for mood and anxiety treatment (canmat, ) or any other professional body in canada. (source) depression self-management appendix c – sham interventions psychoeducation writing is the representation of language in a textual medium through the use of a set of signs or symbols (known as a writing system). it is distinguished from illustration, such as cave drawing and painting, and non-symbolic preservation of language via non-textual media, such as magnetic tape audio. writing most likely began as a consequence of political expansion in ancient cultures, which needed reliable means for transmitting information, maintaining financial accounts, keeping historical records, and similar activities. light therapy historians robert friedel and paul israel list inventors of incandescent lamps prior to joseph swan and thomas edison. they conclude that edison's version was able to outstrip the others because of a combination of three factors: an effective incandescent material, a higher vacuum than others were able to achieve (by use of the sprengel pump) and a high resistance that made power distribution from a centralized source economically viable. exercise the ancient olympic games were athletic festivals held every four years at the sanctuary of zeus in olympia, greece. competition was among representatives of several city-states and kingdoms of ancient greece. these games featured mainly athletic but also combat and chariot racing events. during the games, all conflicts among the participating city-states were postponed until the games were finished. this cessation of hostilities was known as the olympic peace or truce. social support friendship was a topic of moral philosophy in which was greatly discussed by plato, aristotle, and stoics. this was less discussed in the modern era, until the re-emergence of contextualist and feminist approaches to ethics. openness in friendship was seen as an enlargement of the self; aristotle wrote, "the excellent person is related to his friend in the same way as he is related to himself, since a friend is another self; and therefore, just as his own being is choiceworthy him, the friend's being is choice-worthy for him in the same or a similar way.” in ancient greek, the same word was used for "friend" and "lover”. symptom monitoring the study of psychology in a philosophical context dates back to the ancient civilizations of egypt, greece, china, india, and persia. historians point to the writings of ancient greek philosophers, such as thales, plato, and aristotle (especially in his de anima treatise), as the first significant body of work in the west to be rich in psychological thought. as early as the th century bc, greek physician hippocrates theorized that mental disorders were of a physical, rather than divine, nature. depression self-management psychoeducation the term depression was derived from the latin verb deprimere, "to press down". from the th century, "to depress" meant to subjugate or to bring down in spirits. it was used in in english author richard baker's chronicle to refer to someone having "a great depression of spirit", and by english author samuel johnson in a similar sense in . prescribed medications psychoactive drug use is a practice that dates to prehistoric times. there is archaeological evidence of the use of psychoactive substances (mostly plants) dating back at least , years, and historical evidence of cultural use over the past , years. the chewing of coca leaves, for example, was found to date back over years ago in peruvian society. psychotherapy philosophers and physicians from these schools practised psychotherapy among the greeks and romans from about the late th century bc to the th century ad. psychoanalysis was perhaps the first specific school of psychotherapy, developed by sigmund freud and others through the early th century. trained as a neurologist, freud began focusing on problems that appeared to have no discernible organic basis, and theorized that they had psychological causes originating in childhood experiences and the unconscious mind. techniques such as dream interpretation, free association, transference and analysis of the id, ego and superego were developed. pet therapy “the present lineage of dogs was domesticated from gray wolves about , years ago. though remains of domesticated dogs have been found in siberia and belgium from about , years ago, none of those lineages seem to have survived the last glacial maximum. although dna testing suggests an evolutionary split between dogs and wolves around , years ago, no fossil specimens prior to , years ago are clearly morphologically domesticated dog.” depression self-management appendix d – adapted primary health questionnaire- over the last weeks, how often have you had little interest or pleasure in doing things? [responses: nearly every day, more than half the days, several days, not at all] over the last weeks, how often have you been feeling down, depressed, or hopeless? [responses: nearly every day, more than half the days, several days, not at all] over the last weeks, how often have you had trouble falling or staying asleep, or sleeping too much? [responses: nearly every day, more than half the days, several days, not at all] over the last weeks, how often have you been feeling tired or having little energy? [responses: nearly every day, more than half the days, several days, not at all] over the last weeks, how often have you had poor appetite or overeating? [responses: nearly every day, more than half the days, several days, not at all] over the last weeks, how often have you been feeling bad about yourself - or that you are a failure or have let yourself or your family down? [responses: nearly every day, more than half the days, several days, not at all] over the last weeks, how often have you had trouble concentrating on things, such as reading the newspaper or watching television? [responses: nearly every day, more than half the days, several days, not at all] over the last weeks, how often have you been moving or speaking so slowly that other people could have noticed? [responses: nearly every day, more than half the days, several days, not at all] over the last weeks, how often have you been so fidgety or restless that you have been moving around a lot more than usual? [responses: nearly every day, more than half the days, several days, not at all] over the last weeks, how often have you had thoughts that you would be better off dead or of hurting yourself in some way? [responses: nearly every day, more than half the days, several days, not at all] source: patient health questionnaire – depression phq adapted from the prime-md® patient health questionnaire © , pfizer inc depression self-management appendix e – locus of health control multidimensional health locus of control scale – form c each item below is a belief statement about your medical condition with which you may agree or disagree. beside each statement is a scale which ranges from strongly disagree ( ) to strongly agree ( ). for each item we would like you to circle the number that represents the extent to which you agree or disagree with that statement. the more you agree with a statement, the higher will be the number you circle. the more you disagree with a statement, the lower will be the number you circle. please make sure that you answer every item and that you circle only one number per item. this is a measure of your personal beliefs; obviously, there are no right or wrong answers. ) if my condition worsens, it is my own behavior which determines how soon i will feel better again. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) as to my condition, what will be will be. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) if i see my doctor regularly, i am less likely to have problems with my condition. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) most things that affect my condition happen to me by chance. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) depression self-management ) whenever my condition worsens, i should consult a medically trained professional. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) i am directly responsible for my condition getting better or worse. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) other people play a big role in whether my condition improves, stays the same, or gets worse. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) whatever goes wrong with my condition is my own fault. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) luck plays a big part in determining how my condition improves. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) in order for my condition to improve, it is up to other people to see that the right things happen. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) depression self-management e. moderately agree ( ) f. strongly agree ( ) ) whatever improvement occurs with my condition is largely a matter of good fortune. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) the main thing which affects my condition is what i myself do. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) i deserve the credit when my condition improves and the blame when it gets worse. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) following doctor's orders to the letter is the best way to keep my condition from getting any worse. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) if my condition worsens, it's a matter of fate. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) if i am lucky, my condition will get better. a. strongly disagree ( ) depression self-management b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) if my condition takes a turn for the worse, it is because i have not been taking proper care of myself. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) ) the type of help i receive from other people determines how soon my condition improves. a. strongly disagree ( ) b. moderately disagree ( ) c. disagree ( ) d. agree ( ) e. moderately agree ( ) f. strongly agree ( ) depression self-management appendix f – baseline theory of planned behavior questions attitude depression self-management subjective norms – significant others depression self-management subjective norms – physician depression self-management perceived behavioural control depression self-management intentions depression self-management appendix g – post-intervention theory of planned behavior questions intervention group preamble depression self-management psychoeducation depression self-management bibliotherapy depression self-management exercise depression self-management light therapy depression self-management medication depression self-management psychotherapy depression self-management social support depression self-management symptom monitoring depression self-management pet therapy depression self-management appendix h – post-intervention theory of planned behavior questions control group preamble depression self-management psychoeducation depression self-management bibliotherapy depression self-management exercise depression self-management light therapy depression self-management medication depression self-management psychotherapy depression self-management socializing depression self-management symptom monitoring depression self-management pet therapy depression self-management appendix i – student advertisement sad? depressed? low mood? stressed? you may be eligible to participate in the university of ottawa’s optimizing outcomes study. this study will investigate how you and your doctor communicate, and how this is related to your care. your participation in this study is voluntary. participants must be fluent in english. if you agree to participate, you will be asked to complete two questionnaires, one initially and one in two-week's time, each taking approximately minutes. to thank you for your time you will be given one ispr credit. please visit the following website for more information about the study and to register to participate: www.optimizingoutcomes.net the ethical aspects of this study have been sanctioned by the university of ottawa social sciences and humanities research ethics board. triste? déprimé? mauvaise humeur? stressé? vous pourriez qualifier pour participer à l’étude de l’optimisation des résultats, à l’université d’ottawa. cette étude examinera comment vous et votre docteur communiquez, et comment cela influence vos soins. votre participation dans cette étude est volontaire. les participants doivent pouvoir communiquer en anglais. si vous acceptez de participer, vous serez demandé de remplir deux questionnaires, l'un au début et l'autre à deux semaine de temps, chacun prenant environ minutes. pour vous remercier de votre temps, les participants recevra le crédit sipr. veuillez s’il-vous-plaît visiter le site web suivant pour plus d’information au sujet de l’étude et comment y participer: www.optimizingoutcomes.net les aspects d’éthiques portant à cette étude ont été sanctionnés par le bureau d'éthique et d'intégrité de la recherche des sciences sociales de l’université d’ottawa. depression self-management appendix j – kijiji advertisement subject line: participants needed for uottawa study! (uottawa and bestbuy logos as picture). sad? depressed? low mood? stressed? if you are years of age or older, you are eligible to participate in the university of ottawa’s optimizing outcomes study. this online study will investigate how you and your doctor communicate, and how this is related to your care. your participation in this study is voluntary. participants must be fluent in english. to thank you for your time, you will be entered in a draw to win a $ gift certificate from best buy canada. please visit the following website for more information about the study and to register to participate: www.optimizingoutcomes.com the ethical aspects of this study have been sanctioned by the university of ottawa social sciences and humanities research ethics board (ethics file # - - ) (subject line same as english due to space) triste? déprimé? mauvaise humeur? stressé? si vous avez -ans, vous êtes eligible pour participer à l’étude de l’optimisation des résultats, à l’université d’ottawa. cette étude examinera comment vous et votre docteur communiquez, et comment cela influence vos soins. votre participation dans cette étude est volontaire. les participants doivent pouvoir communiquer en anglais. pour vous remercier de votre temps, les participants seront inclus dans un tirage pour gagner un certificat-cadeau de $ à best buy canada. veuillez s’il-vous-plaît visiter le site web suivant pour plus d’information au sujet de l’étude et comment y participer. www.optimizingoutcomes.com les aspects d’éthiques portant à cette étude ont été sanctionnés par le bureau d'éthique et d'intégrité de la recherche des sciences sociales de l’université d’ottawa. (ethics file # - - ) depression self-management appendix k – primary care patient advertisement deb_pone. .. hal id: hal- https://hal.univ-brest.fr/hal- submitted on jan hal is a multi-disciplinary open access archive for the deposit and dissemination of sci- entific research documents, whether they are pub- lished or not. the documents may come from teaching and research institutions in france or abroad, or from public or private research centers. l’archive ouverte pluridisciplinaire hal, est destinée au dépôt et à la diffusion de documents scientifiques de niveau recherche, publiés ou non, émanant des établissements d’enseignement et de recherche français ou étrangers, des laboratoires publics ou privés. does pet arrival trigger prosocial behaviors in individuals with autism? marine grandgeorge, sylvie tordjman, alain lazartigues, eric lemonnier, michel deleau, martine hausberger to cite this version: marine grandgeorge, sylvie tordjman, alain lazartigues, eric lemonnier, michel deleau, et al.. does pet arrival trigger prosocial behaviors in individuals with autism?. plos one, public library of science, , ( ), pp.e . � . /journal.pone. �. �hal- � https://hal.univ-brest.fr/hal- https://hal.archives-ouvertes.fr does pet arrival trigger prosocial behaviors in individuals with autism? marine grandgeorge , *, sylvie tordjman , alain lazartigues , eric lemonnier , michel deleau , martine hausberger chru de brest, hôpital de bohars, centre de ressources autisme, bohars, france, umr-cnrs , laboratoire ethologie animale et humaine, rennes, france, chru guillaume régnier, rennes, france, centre de recherches en psychologie, cognition et communication, rennes, france abstract alteration of social interactions especially prosocial behaviors – an important aspect of development – is one of the characteristics of autistic disorders. numerous strategies or therapies are used to improve communication skills or at least to reduce social impairments. animal-assisted therapies are used widely but their relevant benefits have never been scientifically evaluated. in the present study, we evaluated the association between the presence or the arrival of pets in families with an individual with autism and the changes in his or her prosocial behaviors. of individuals with autism - on the basis of presence or absence of pets - two groups of individuals and two groups of individuals were assigned to: study (pet arrival after age of versus no pet) and study (pet versus no pet), respectively. evaluation of social impairment was assessed at two time periods using the -items adi-r algorithm and a parental questionnaire about their child-pet relationships. the results showed that of the items changed positively between the age of to (t ) and time of assessment (t ) in the pet arrival group (study ): ‘‘offering to share’’ and ‘‘offering comfort’’. interestingly, these two items reflect prosocial behaviors. there seemed to be no significant changes in any item for the three other groups. the interactions between individuals with autism and their pets were more – qualitatively and quantitatively - reported in the situation of pet arrival than pet presence since birth. these findings open further lines of research on the impact of pet’s presence or arrival in families with an individual with autism. given the potential ability of individuals with autism to develop prosocial behaviors, related studies are needed to better understand the mechanisms involved in the development of such child-pet relationship. citation: grandgeorge m, tordjman s, lazartigues a, lemonnier e, deleau m, et al. ( ) does pet arrival trigger prosocial behaviors in individuals with autism? plos one ( ): e . doi: . /journal.pone. editor: liane young, boston college, united states of america received october , ; accepted june , ; published august , copyright: � grandgeorge et al. this is an open-access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. funding: the adrienne and pierre sommer foundation gave the financial support for this study. the funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. the authors declare that they have no financial interests. competing interests: the authors have declared that no competing interests exist. * e-mail: marine.grandgeorge@chu-brest.fr introduction impairments of social development associated with communi- cation deficits, restricted interests and repetitive behaviors constitute the triad of autistic disorders [ , ]. individuals with autism have difficulty interacting with others as well as using and interpreting nonverbal communication. social impairments have been regarded as primary deficits by several authors [ , ] since they are among the first symptoms of autistic disorders (e.g. difficulty in participating in imitative or pretend play [ , ]). individuals with autism appear to have problems recognizing, understanding and expressing both feelings and intentions, which may be due to a lack of ‘‘theory of mind’’ [ ]. these individuals fail to infer mental states and display impairment of abilities to understand and manage emotions (i.e. understand the other’s feelings and display appropriate behavior or response [ , ]). many strategies, supports or therapies have been aimed at improving the everyday lives and social interactions of individuals with autism [ , ] for example, peer-mediated interventions have proved to be useful through increasing the communicative interactions and stimulating the development of joint attention [ ]. complementary and alternative interventions are also proposed: relaxation, music or activities with animals [ ]. indeed, since early findings by levinson’s reporting that a dog could help in therapy [ ], animal assisted therapies (aat) have been used largely. sessions with dogs, horses or dolphins are proposed, and considered overall as beneficial to improve prosocial behaviors [ – ]. however, to date, there is no scientific evaluation of their relevant benefit [ , ]. moreover, the context in which aat occur must be accounted for. the impact of having a pet in a therapeutic or home setting seems to be different when encountering humans [ ]. more broadly, beneficial effects of having a pet at home have been reported for improvement of health or well-being of elderly, isolated women, adults and children [ – ]. it is considered as a source of non judgmental and positive affection [ , ]. several studies suggest that children learn prosocial behaviors through their interactions with pets [ – ]. these prosocial behaviors constitute an important aspect of a child’s development. they are triggered by pet’s presence under certain circumstances (e.g. if a strong bond is formed, if the pet lives at home or if the human partner is younger than years old [ – ]). thus, bonding with a pet may help with developing some prosocial behaviors. this hypothesis seems to be consistent with the results of other studies about the reciprocal behavior that leads an animal to exceptional plos one | www.plosone.org august | volume | issue | e learning (e.g. alex the parrot [ ], hoover the seal [ ], kanzi the chimpanzee [ ]). in the present study, we hypothesized that a pet at home might help individuals with autism to develop some prosocial behaviors. for this, we compared three situations: never owned a pet, owned a pet since birth (i.e. pet has been part of the individual’s environment) or owned a pet after the age of . the age of to is considered as a ‘‘key age’’ in autistic disorders [ ] because it seems to be representative of the period when the severity of autism is the most important. indeed, older subjects might outgrow some of the major impairments. accordingly, there is a need to avoid focusing on the basis of behavior in childhood. consequently, the autism diagnostic interview-revised (adi-r) explains that the most satisfactory compromise is to consider the age of to as the key age to evaluate the individual’s behavior. the arrival of a pet in a family has been shown to increase the level of interactions between family members: they spend more time together and share joint attention on the new family member [ ]. the new arrival of a pet potentially elicits more attention in individuals with autism thus leading to a greater chance of bonding with the pet. we further hypothesized that the arrival of a pet when the human partner was old enough to ‘‘realize this change’’ would increase the chances of improving the human’s prosocial behaviors. for this, we evaluated the individual’s impairments using the adi-r [ ], to compare two time periods (i.e. t at the age of to and t at the time of assessment), and a parental questionnaire about the child-pet relationship. since direct questioning of individuals with autism can be complicated, we only used parental reports in this study. according to the literature, individuals with autism display delays and deficits in the acquisition of language (e.g. complete absence of functional communication, impairments in conversation) [ , ]. parents are a reliable source of information in regard to the evaluation of their child’s developmental problems [ , ]. for example, in a previous study, siegel et al. [ ] found that parental reports about typical daily behaviors of their children with autism confirmed observations made during diagnostic play sessions by trained professionals. in addition, parental reports concerning both their pets and their child’s behaviors are more reliable than children’s interviews [ ]. methods participants all the individuals with autism (n = ; r/ =; mean age, . years old, range from to years old) in this study, came from the ‘‘centre de ressources sur l’autisme de bretagne’’ (bohars, france) or the child day-care facilities controlled by the bicêtre and reims university hospitals (france). the cognitive and behavioral assessments were approved by the ethics committee of bicêtre hospital (the committee was not specific to this study). it is worth mentioning that the present research was non-invasive and did not involve pharmacological interventions. hence, in accor- dance to the ethics committee, parents (or guardians) gave a simple verbal consent. all individuals met dsm-iv criteria for autistic disorders [ ]. as part of a routine follow-up of individuals with autism, the same psychiatrists did the diagnosis and the adi-r [ ] assessment to confirm the diagnosis. cognitive and behavioral assessments the cognitive functioning of individuals with autism from child day-care facilities of the university hospitals of bicêtre and reims (n = ) was assessed by two psychologists using the age- appropriate weschler intelligence scale and the kaufman k- abc [ ]. all assessed individuals with autism were cognitively impaired (mean full scale iq s.d: . . , with a range of – ; mean verbal iq s.d: . . , with a range of – ; mean performance iq s.d: . . , with a range of – ). adi-r was used to assess the behavior of participants with autism [ ]. adi-r, an extensive, semi-structured parental interview, was conducted by trained psychiatrists (el, st). the structuring lies in the details of the predetermined codings for each behavioral item. the interview schedule specifies a variety of screening questions, the purpose of which is to guide the interviewer on the content of the response (yes or no responses from the informant, i.e. parents or guardians, were inadequate). behavioral descriptions are coded. the codings have been devised with the aim of differentiating developmental delay from deviance. thus, for each section of the interview, there is an initial compulsory probe printing. the interviewer should then continue to ask further questions until he/she is able to make the coding for each item, for example, using different supplementary probes proposed in the adi-r. the adi-r scale assessed the three major domains of autistic impairments: ( ) reciprocal social interactions, ( ) verbal and non-verbal communication and ( ) stereotyped behavior and restricted interests. the presence of verbal language is defined as daily, functional and comprehensible use of spontaneous phrases of at least three words, including at least sometimes, a verb [ ]. the adi-r algorithm is validated to assess the behavior and is based on the -to- -year-old period of life. to reveal possible variations, we compared the ratings at the current period (t ) of the subset of adi-r to those at the age of to (t ) [ ]. the severity of behavioral impairments was scored using the subset of adi-r items included in the adi-r algorithm, following the procedure previously described [ ]. we give below the mean score for each main domain: ( ) total reciprocal social interaction ( items), ( ) total verbal communication and total non-verbal communication ( items for non verbal patients, the score was based on items), ( ) total stereotypies ( items). a score for the combined domain (social/communication/stereotypies) was calculated and regarded as a global score of autism severity (table ). based on direct clinical observation for each participant by an independent psychiatrist, a diagnosis of autistic disorder was made according to dsm-iv [ ] and icd- [ ] criteria and was confirmed by the adi-r ratings. we didn’t perform an autistic diagnostic observation schedule [ ] assessment. it has not been a routine practice in france before [ ]. questionnaires on human-pet relationships parents were interviewed by phone by one of the investigators (mg) not involved in the adi-r scoring (i.e. was not aware of the data values). they were asked to answer a short standardised questionnaire about the child-pet relationship. no further in- formation was given before the beginning of the questionnaire. verbal informed consent was given by the parents (or guardians) when the questionnaire on human-pet relationships was filled in. the consent form explained that the questionnaire and adi-r data will be used together. adi-r evaluation was performed by the psychiatrist who was not aware of our project. therefore, neither parents nor evaluators were influenced by the potential expectations of the pet’s impact. the interval between the adi-r assessment and the questionnaire phase was less than one year. the data from parental questionnaire were collected between winter and winter . the questionnaire was about the presence (or absence) of pets in the family at t (i.e. at the individual’s age of to ) and at t (i.e. at the time of adi-r assessment). if one or more pets were present, pet, autism and prosocial behavior plos one | www.plosone.org august | volume | issue | e parents gave information on the species and the pet ownership duration, as well as their child-pet relationship. the following data were gathered (yes or no answers): tactile interactions, visual interactions, play, care (e.g. feeding, walking with the pet, brushing the pet), time spent with and any privileged relationship. the above data helped us to evaluate the individual-pet bond. moreover, parents specified whether the pet was specially acquired for their child with autism. pets were dogs, cats and/or little furry animals. half of the pets were acquired for the individuals with autism. study : arrival of a pet between the age of to and the time of adi-r assessment from the initial pool of participants, we selected two groups. the first group, gpet, did not own a pet before t but owned at least one afterwards (n = ; pets were dogs, cats and one hamster). the gpet individuals were matched with control individuals – who never owned a pet (g a, n = ) - for sex, age, overall level of language (absence/presence of verbal language as defined by adi-r criteria in the following section) and history of epilepsy (table ; all chi-square tests and mann whitney u-tests p. . ). both the total score and the sub-scores of the adi-r were not significantly different (all mann-whitney u-tests, p. . ; table ). the gpet and g a mean age was . . years old at t . on the average, we obtained the gpet parents responses to the questionnaire months after the pet’s arrival. study : owned a pet since birth we investigated whether the arrival (or presence) per se of pets was associated with changes in any of the adi-r social items. we selected two groups from the initial pool of participants. the first group, galw, owned at least one pet at home since birth (n = ; pets were dogs, cats and one rabbit). among the galw individuals, three owned two pets. these galw individuals were matched with control individuals - who never owned a pet (g b, n = ) - for the same individual’s characteristics as in study (all chi-square and mann whitney u-tests p. . ; table ). both the total score and the sub-scores of the adi-r were not significantly different (all mann-whitney u-tests, p. . ; table ). the galw and g b mean age was . . years old at t . statistical analyses changes between item scores at t and at t in each group (gpet, galw, g a and g b) were evaluated using wilcoxon’s matched- pairs signed rank test. when a significant effect was observed, mann-whitney test was then applied to evaluate whether or not the change could be associated with the following variables: n individual’s gender n reasons for obtaining the pet(s) table . demographic and behavioral characteristics of study groups (g a and g b never owned pet; galw always owned a pet; gpet didn’t own a pet before the age of , but owned at least one at the time of assessment). goa (n = ) gpet (n = ) gob (n = ) galw (n = ) gender (m/f) / / / / age (months; mean sd; range) . . ( – ) . . ( – ) . . ( – ) . . ( – ) overall level of language / / / / epilepsy (yes/no) / / / / adi-r at t (mean sd) total . . . . . . . . reciprocal social interactions . . . . . . . . non verbal communication . . . . . . . . verbal communication . . . . . . . . restricted and repetitive behaviors . . . . . . . . adi-r at t (mean sd) total . . . . . . . . reciprocal social interactions . . . . . . . . non verbal communication . . . . . . . . verbal communication . . . . . . . . restricted and repetitive behaviors . . . . . . . . mann whitney u-test at t u p-value u p-value total . . . reciprocal social interactions . . non verbal communication . . . verbal communication . . . restricted and repetitive behaviors . . absence/presence of verbal language as defined according to the adi-r criteria. scores corresponded to children who had a verbal language according to the adi-r criteria. doi: . /journal.pone. .t pet, autism and prosocial behavior plos one | www.plosone.org august | volume | issue | e n presence of different pets n type of human-pet interactions (including privileged relationship) n life setting (i.e. urban or rural) spearman’s rank order correlation assessed the correlation between the individual’s age or iq score and his or her adi-r item score. since tests were performed at both t and t , in order to avoid false positive due to chance, bonferroni correction for multiple comparison was applied systematically (p, . ). results study comparison of adi-r assessment between t and t revealed significant changes in two of the items in the gpet. thus, gpet had a lower deficit score for the items ‘‘offering to share’’, e.g. sharing food or toys with parents or other children (wilcoxon test: zgpet = p, . ; fig. ) and ‘‘offering comfort’’, e.g. reassur- ing parents or peers who were sad or hurt (wilcoxon test: zgpet = p, . ; fig. ). no changes were observed for the control individuals (wilcoxon tests: zg a = , zg a = p. . in both cases; fig. , fig. ). in gpet and g a, neither the total scores of adi-r at t and t (wilcoxon tests: zgpet = p = . ; zg a = p = . ) nor the sub-scores in the main domains (all wilcoxon tests: p. . ) were statistically different at p, . . score differences between t and t were neither correlated with individual’s age (all spearman’s rank order correlation p. . ) nor affected by gender, life setting, presence of different pets, and type of human-pet interaction (all mann whitney u-tests p. . ). interestingly, whether the parents had acquired the animal for their child or for the family revealed no significant difference in adi-r scores (mann whitney u-test = . p. . ), indicating that the results were not influenced by the parents expectations on the pet’s impact. in addition, communication and non-social aspects (e.g. scores for repetitive behavior and stereotyped patterns) were not affected by the pet’s arrival (all wilcoxon tests p. . ). no significant correlation (spearman’s rank order correlation, p. . ) between the items ‘‘offering comfort’’ or ‘‘offering to share’’ and iq scores (verbal iq, performance iq and full iq) was observed. parental questionnaire offered some information about the interaction type gpet individual had with his or her pet (table ). tactile interactions were the most reported (i.e. %; n = ), followed by time spent with the pet (n = ), play (n = ) and visual interactions (n = ). care was the least reported item (n = ). thus, seven gpet individuals were considered by their parents as having a privileged relationship with their pets. among the five remaining individuals, three owned a cat and two owned a dog. study no significant change was observed for individuals with autism who owned a pet since birth or for control individuals (galw and gob; all wilcoxon test p. . ; fig. , fig. ). in galw and gob, neither the total scores of adi-r at t and t (wilcoxon tests: zgalw = p = . ; zg b = p = . ) nor the sub-scores in the four domains (all wilcoxon tests: p. . ) were statistically different at p, . . here again, an exploration of the parental questionnaire offered some information about the interaction type galw individual had with his or her pet. few individuals were reported as interacting with their pets (table ). care and play were not mentioned. two individuals spent time with their pet, four had tactile interactions and five had visual interactions. only three galw individuals were considered by their parents as having privileged relationships with their pets (i.e. three dogs). however, two of the three individuals who owned the same pet since birth, neither interacted nor bonded with it (i.e. all items were reported as absent). discussion comparison of adi-r assessment between gpet and galw at two different time periods revealed significant changes in adi-r scores only in the group experiencing the pet arrival in their homes. however, these changes were limited to two adi-r items, ‘‘offering to share’’ and ‘‘offering comfort’’. these findings suggest an improvement in prosocial behaviors of the individuals with autism. these prosocial behaviors are mainly impaired in individuals with autism [ , ]. the absence of a significant correlation with iq scores might imply that these changes were not related to the level of cognitive functioning. interestingly, the individual-pet interactions (i.e. bonding) were more - qualitatively and quantitatively - reported in the case of pet arrival than pet presence since birth. to our knowledge, this is the first study showing an association between pet arrival and changes in prosocial behaviors. our study follows the footsteps of the human- pet reports on the improvement of prosocial behaviors in individuals with typical development [ , ]. on the significance of changes on the one hand, two main possible explanations could account for these findings. first, parents may have acquired a pet because they believed that it would improve the prosocial behaviors of their children with autism. in this case, their responses to the adi-r could be biased. the following findings strongly suggest that this was not the case: . only pets (of the pets in gpet) were acquired especially for the individuals with autism; the others were acquired for another family member. changes in the prosocial behaviors were observed in both cases. thus, these changes were not related to parental expectations. . this ‘‘pet study’’ (and its related questionnaire) began after the adi-r completion. this suggests that the parents were not aware of the possible pet impact at t . . improvement was found only for two of the items, further indicating the non-bias character of parent’s responses. the second explanation is that the arrival of a pet may have triggered a change in the individuals’ ‘‘perception of the social world’’. pets are supposed to enhance different skills in children with typical development such as self-esteem, socio-emotional development and empathy [ , , ]. according to several authors, children with typical development seem to learn prosocial behaviors through their interactions with pets (e.g. sharing with and stroking the pet) [ , ]. could this also be the case for individuals with autism? only observational studies can reveal how individuals with autism interact with their pet and whether somehow they develop skills to understand pet’s behaviors or needs [ ]. on the other hand, it is not very surprising that other adi-r items did not change, not even those related to the prosocial behaviors. since verbal exchanges with pets are excluded, we would expect no changes in language skills whereas parents can indeed influence such skills [ ]. moreover, other studies confirm that animals neither influence motor skills nor reduce restricted behaviors in children with autism [ ]. pet, autism and prosocial behavior plos one | www.plosone.org august | volume | issue | e potential mechanisms numerous theories have been proposed to explain the pet’s influence on human life (for a review, see [ ]). animals are animates, thus differ from inanimates in regard to many biological characteristics such as motion or sensory properties. specifically, animates are beings that know, perceive, learn and think. these abilities make them appealing ([ ] in [ ]). friedman et al. [ ] proposed the bio-psycho-social model that considers pets could reduce loneliness and thus could also be considered as ‘‘transitional objects’’ especially for the children [ , ]. pets may also be considered as ‘‘distracters’’. brickel [ ] and more recently odendaal [ ] proposed to explain this phenomenon by the attention-shift theory. they stated that when a human is in a stressful situation, a pet seems to distract him/her from the anxiogenic stimulus (e.g. unknown situations in the case of people with autism). animal’s presence triggers human’s attention-shift. attention-shift offered by a pet under repeated exposure to a stressful situation, leads to a decrease in anxiety. therefore, a family pet may also become a source and a center of attention that could be useful in individual’s learning. on the one hand, the presence of a pet can have a direct influence. when a human and a pet are interacting, each partner uses signals emitted by the other to adjust their behavior: the behavior of one influences the response of the other (e.g. between a dog and a child [ – ]). a bond or a relationship emerges from these series of interactions where both partners have expectations on the next interaction on the basis of the previous ones [ ]. thus, as stated by filiatre et al. [ ] the pet’s behavior ‘‘could contribute to the acquisition by the child of a more structured and more socially efficient behavioral repertoire’’. moreover, the attitudes that children display towards pets have an impact on their prosocial and social behaviors [ , ]. on the other hand, a pet can have an indirect influence on children through the family. indeed numerous parents state that pets can be precious tools with which they educate their children [ , , ]. for example, beck et al [ ] showed that an increased knowledge about wild birds after a ten-week educational home-based program for feeding was associated with parental involvement. people with autism have been shown to be less sensitive to human voices [ ] or faces [ ] than to other environmental stimuli. to our knowledge, little is known about how they perceive animals’ characteristics, but they are quite able to classify their animal preferences based on pictures [ ]. using a task based on sorting by preference, celani [ ] showed that children with figure . item scores of ‘‘offering to share’’ at t ( -to- -years old; in grey) and t (current period; mean age: . . months old; in black) for g a (group with no pet in the family), gpet (group with a pet arriving after the child’s th birthday), g b (group with no pet in the family) and galw (group always with at least one pet at home since birth). higher the score, more significant was the ‘‘offering to share’’ (e.g. sharing food or toys with parents or other children). doi: . /journal.pone. .g pet, autism and prosocial behavior plos one | www.plosone.org august | volume | issue | e autism chose pictures with an animal (e.g. dog, cat) rather than the ones with objects. at last, some authors explained that the affinity of people with autism for pets comes from animal’s multisensory characteristic. in addition, according to these authors, an animal’s behavior seems to be easier to decode and to predict than that of a human partner [ , ]. pet presence versus arrival one intriguing finding was that similar results were observed for the individuals who were in the presence of a pet from birth and those who never owned a pet. changes were only observed in the group where the pet arrived after the age of . different hypotheses are possible and are explored below. when the pet was reported to be present since the individual’s birth, one would expect a cumulative effect of its presence. we cannot exclude this effect even if the adi-r did not clearly explore it here (e.g. neither a too low nor a specific effect was explored by adi-r items). however, we proposed an alternative explanation. individuals with autism may usually avoid unfamiliar social partners and display diminished interest in novelty [ ]. but under certain circumstances, children with autism prefer new stimuli rather than familiar ones [ ]. the presence of a pet may be a mere ‘‘additional’’ element of the environment, therefore not attracting special attention. this is consistent with our parental figure . item scores of ‘‘offering comfort’’ at t ( -to- -years old; in grey) and t (current period, mean age: . . months old; in black) for g a (group with no pet in the family), gpet (group with a pet arriving after the child’s th birthday), g b (group with no pet in the family) and galw (group always with at least one pet at home since birth). higher the score, more significant was the impairment ‘‘offering comfort’’ (e.g. reassuring parents or peers who were sad or hurt). comparisons were performed using wilcoxon’s matched-pairs signed ranks tests (significant threshold: p, . ). doi: . /journal.pone. .g table . number of individuals with autism who display different types of relationships with their pet according to parents. presence of each item gpet (n = ) galw (n = ) tactile interactions [ ] visual interactions [ ] play [ ] care [ ] time spent with pet [ ] privileged relationship [ ] as three individuals of galw owned two pets, the first number showed the first pet’s answer and the second number in brackets showed the second pet’s answer. doi: . /journal.pone. .t pet, autism and prosocial behavior plos one | www.plosone.org august | volume | issue | e questionnaire revealing that few of these individuals (galw) developed a real bond with the pet in comparison to the other group (i.e. gpet, pet arrival). for example, only a quarter of galw individuals had a privileged relationship with their pet. the sole presence of the pet did not confer benefit for the individuals with autism. such situation was previously reported in the children with typical development : the quality of relationship with their own pet appears to be a direct determinant of their socio-emotional development [ ] and ‘‘pet bonding’’ is a stronger determinant of pet-associated benefits than the sole pet ownership [ ]. if we take a look at the other side, the pet may also have formed a preferential bond with another member of the family and therefore been less demanding on the individual with autism. the other non-exclusive possibility is that the arrival of a pet strengthens the cohesion of the family and increases the levels of interactions between their members. pet’s arrival plays an even more important role in the lives of children who have inadequate or destructive family and social environments [ ]. most families acquiring a pet experienced an increase in quantity and quality of time spent together and felt happier after pet’s arrival [ ]. this situation might be due to the collective attention on the new pet. this new pet arrival might induce an increased interest of the individuals towards the pet and/or their involvement in the family’s interactions. cain [ ] talked about the ‘‘triangling’’ process initiated by the pet (i.e. structuring and promoting interactions between two humans). in our study, playing with the pet was reported by seven of the parents in gpet whereas only two of the parents in galw noticed it. this behavior is a powerful means by which children master skills that are important for their development [ ]. playing with a pet is a complex behavior, sometimes involving object manipulation as a means for practice and mastery of action schemas (i.e. sensorimotor play) or child’s ability for mental representation. thus, it provides a child with means of practicing and un- derstanding the events of his or her social world (i.e. pretend play) [ ]. these behaviors are not only observed in humans but also in human-pet interactions [ , ]. such interactions may have some positive outcome: playing with a dog during pet therapy had beneficial impact on hospitalized children [ ]. this implies that playing with a pet may be beneficial to individuals with autism. interestingly, in our study, taking care of the pet was reported by half of the parents in gpet whereas none of the parents in galw noticed it. our finding infers the positive influence of pet arrival on parental support in the development of individuals with autism. previous studies have shown that parents use pets to teach their children how to take care of pets by giving them age-appropriate tasks [ ]. with parental support, the child involvement towards a pet may influence his/her socio-emotional development [ ]. finally individuals with autism may be sensitive to an overall change in their social sphere. therefore the changes may be related merely to the overall family functioning rather than the sole pet arrival. this however would not explain why only two precise items were affected and not the others. conclusion this study reveals that in individuals with autism, pet arrival in the family setting may bring about changes in specific aspects of their socio-emotional development. it suggests the improvement of some prosocial behaviors in such individuals under certain circumstances. thus, it offers a ‘‘window of opportunity’’ to future longitudinal developmental studies to further confirm these findings and explain their underlying mechanisms. given the current state of knowledge, we suggest further research exploring our hypothesis on the association between the arrival of a new pet and the change in a family dynamic to evaluate the impact of another child’s arrival. our study has limitations that need to be noted. both our study design and its lack of power ( individuals from an initial cohort of participants) didn’t allow us to clarify the exact role of pets in the families who already owned pets. nevertheless these first results open interesting lines of research exploring the efficacy of animals employed in aat settings. further studies with larger sample sizes (e.g. including more control groups) are needed to clarify the exact role of pets in this context. acknowledgments we are thankful to dr. ann cloarec, researcher, ethos laboratory and zarrin alavi, (for her pertinent advice) medical writer and translator, brest university hospital, department of internal medicine and chest diseases; inserm cic , to pr michel botbol, chru brest, to families for their participation, to the fondation sommer for their support and the french gis ccs (groupe d’intérêt scientifique - comportement cerveau et société) author contributions conceived and designed the experiments: mg mh al st md el. performed the experiments: mg mh el. analyzed the data: mg mh el. contributed reagents/materials/analysis tools: mg mh el. wrote the paper: mg mh st el. references . american psychiatric association ( ) diagnostic and statistical manual of mental disorders. washington. . wing l, gould j ( ) severe impairements of social interaction and associated abnormalities in children: epidemiology and classication. journal of autism and developmental disorders : – . . baron-cohen s ( ) mindblindness: an essay on autism and theory of mind. cambridge: mit press. p. . mundy p ( ) joint attention and social-emotional approach behavior in children with autism. development and psychopathology : – . . osterling ja, dawson g, munson ja ( ) 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caregivers of community-residing persons with dementia are mostly unpaid and have high rates of unmet basic and health needs. the national alzheimer’s project act (napa) mandates improved coordination of care for persons with dementia and calls for special attention to racial populations at higher risk for alzheimer’s disease or related dementias (adrd) to decrease health disparities. the purpose of this study is to describe the perceptions of african american caregivers of people with dementia about community resources needed to support caregiving as well as their own self-care. methods: using a qualitative study design, in-depth, semi-structured qualitative interviews were conducted with caregivers (n = ) at an urban geriatric clinic to elicit community resource needs, barriers to and facilitators of resource use and how to optimize clinical referrals to community resources. caregivers were shown a community resource referral list (“healtherx”) developed for people with dementia and were queried to elicit relevance, gaps and insights to inform delivery of this information in the healthcare setting. data were iteratively coded and analyzed using directed content analysis. results represent key themes. results: most caregivers were women (n = , %) and offspring (n = , %) of the person with dementia. community resource needs of these caregivers included social, entertainment, personal self-care and hospice services. main barriers to resource use were the inability to leave the person with dementia unsupervised and the care recipient’s disinterest in participating in their own self-care. facilitators of resource use included shared caregiving responsibility and learning about resources from trusted sources. to optimize clinical referrals to resources, caregivers wanted specific eligibility criteria and an indicator of dementia care capability. conclusions: african american caregivers in this study identified ways in which community resource referrals by clinicians can be improved to meet their caregiving and self-care needs. keywords: caregiving, dementia, qualitative analysis, race, self-care background african american people with alzheimer’s disease or re- lated dementias (adrd) are more likely than others to live in high poverty communities [ ] with fewer adrd- specific support resources [ ] and have higher rates of un- met needs than their white counterparts [ ]. they are also more likely than others to receive “intensive informal care, ” defined as more than h of monthly care from a fam- ily or other unpaid caregiver [ ]. the national alz- heimer’s project act mandates the improved coordination of care for persons with adrd and calls for special atten- tion to racial populations at higher risk for adrd in order to decrease health disparities [ ]. recommended imple- mentation strategies [ ] and success measures [ ] include ensuring access to adrd-specific community resources to support caregivers’ ability to provide care while main- taining their own health and well-being. effective advance- ment of the napa mandates requires engagement with © the author(s). open access this article is distributed under the terms of the creative commons attribution . international license (http://creativecommons.org/licenses/by/ . /), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the creative commons license, and indicate if changes were made. the creative commons public domain dedication waiver (http://creativecommons.org/publicdomain/zero/ . /) applies to the data made available in this article, unless otherwise stated. * correspondence: eabramsohn@bsd.uchicago.edu department of obstetrics and gynecology, the university of chicago, s maryland ave., mc , chicago, il , usa full list of author information is available at the end of the article abramsohn et al. bmc geriatrics ( ) : https://doi.org/ . /s - - - http://crossmark.crossref.org/dialog/?doi= . /s - - - &domain=pdf http://orcid.org/ - - - http://creativecommons.org/licenses/by/ . / http://creativecommons.org/publicdomain/zero/ . / mailto:eabramsohn@bsd.uchicago.edu and input from a diversity of adrd caregivers. to date, there is little evidence of input from african american caregivers on the development of community resource im- plementation strategies for interventions designed to sup- port caregivers. since , researchers, community leaders and residents, including older adults, have been collaborating on the south side of chicago, one of the nation’s largest african ameri- can regions [ ], to ensure the visibility of and timely access to community resources for self-care and caregiving [ – ]. communityrx is a digital community resource referral sys- tem that integrates with electronic medical record systems to generate an automated and personalized community re- source guide (called a “healtherx”) at the point of care (fig. ). developed with support of a – health care innovation award from the u.s. center for medicare and medicaid innovation (cmmi), communityrx has been shown to be an acceptable and scalable intervention to sup- port self-care by systematically connecting people to com- munity resources in a predominantly african american community [ , , ], and is one of few efforts to focus on connecting the adrd population to community resources. the healtherx for people with dementia included resource types indicated by clinical guidelines [ – ], expert opinion and best available evidence [ , ], including adult day- cares, group exercise classes, counseling, volunteer oppor- tunities and transportation services. although community members were engaged throughout all phases of the original communityrx study [ , ], adrd caregivers were not specifically solicited for their input and feedback. while evidence to support the self-care resource needs of dementia caregivers is well established in the litera- ture, the predominance of evidence derives from samples of mostly white caregivers or do not stratify findings by race [ ]. two studies focused specifically on afri- can american caregivers in the southern united states and found a general lack of information about or limited access to community resources for caregiving [ , ]. building on these findings, this qualitative study on chi- cago’s south side, one of the nation’s largest african american urban communities [ ], elicited the percep- tions of african american caregivers of people with de- mentia about community resources needed to support caregiving as well as their own self-care. we further assessed the specific barriers to and facilitators of using community-based resources and caregivers’ insights on how to optimize community resource referrals to better serve their needs. methods research participants this volunteer sample of research participants included adults who self-identified as african american or black who were currently providing informal or unpaid care of a person with a diagnosis of dementia. caregivers were recruited for participation in this study from the university of chicago outpatient senior health center located in the south shore neighborhood ( % african american population) [ ]. this site was one of clin- ical sites that participated in the original cmmi-funded communityrx study [ ]. study design and recruitment using a qualitative study design, in depth, semi-structured interviews were conducted with caregivers of community- residing persons with dementia. caregivers were recruited fig. example healtherx for alzheimer’s disease and related dementias. athe version of the healtherx presented to caregivers in this study included a picture of the person in the role of the community health information specialist abramsohn et al. bmc geriatrics ( ) : page of for this study in-person, either directly from the waiting room or via an on-site, social worker-led support group for caregivers of people with dementia. eligible partici- pants were years of age or older, english-speaking (as are the vast majority of patients receiving care at this site) and self-identified as the primary caregiver to a person with dementia residing in one of communityrx target zip codes (a region that includes the primary service area of the outpatient senior health center). once introduced to the study, caregivers expressed interest and were eligible for participation. of these caregivers, were interviewed. the university of chicago institutional re- view board approved this study and all participants pro- vided written documentation of informed consent, which included a discussion of the purpose of the research and the risks and benefits of participating. data collection and analysis in-person, semi-structured qualitative interviews were conducted by two women from the research team (jj and kp). the interviews elicited information about the following domains: ( ) community resource needs for people with dementia and for caregiver self-care, ( ) the need for information about hospice resources, and ( ) barriers to and facilitators of accessing community re- sources. participants were then asked to view a healtherx (fig. ) for people with dementia, adapted from the communityrx project and tailored to include neighborhood resources in which the health clinic was located. caregivers were asked to describe strategies that would help optimize the content and delivery of com- munity resource guides. the interviews took place in a private room at the outpatient senior health center and were audio recorded. data collection concluded when theme saturation was reached across each of the main research domains. interviews lasted approximately h; participants were provided $ cash compensation upon completion of the interview. data were iteratively coded and analyzed using con- ventional content analysis [ ]. analysis of the inter- views began with a full read of each transcript (ea, stl, jj and kp) in order to identify recurrent ideas and key themes. a series of meetings were held during which the authors created an initial codebook based on identifica- tion of key themes and emerging categories. coding of interview data began with a second read of each tran- script, using the codebook. any textual data that were identified in the first-pass read of the transcript but not coded using a predefined code were assigned a new code. throughout the process, two primary coders (jj, kp) met regularly to discuss and iterate codes and re- solve interpretive differences. in order to establish inter- rater reliability, a third researcher (ea) coded the data separately using the final codebook. two researchers (ea, stl) served as adjudicators when consensus could not be reached by the two primary coders. atlas.ti version . . (scientific software development, berlin, germany) was used for data coding, analysis and textual extraction. direct quotes are noted with double quota- tion marks; quotes within a quote are noted with single quotation marks. quotes are noted by a unique respond- ent id and respondent’s age (randomly adjusted by an integer between − and to mitigate the risk of deduct- ive disclosure). results caregiver characteristics table describes the sociodemographic, health and caregiving characteristics of caregivers in this study. caregivers (n = ) ranged in age ( – years, median years). most caregivers were women (n = , %) and many had private insurance for themselves (n = , %). all caregivers were relatives of the person with de- mentia, but primarily were adult children or grandchil- dren (n = , %) and spouses (n = , %). reported duration of caregiving and daily time spent caregiving varied widely ( – years, median years, and – h, median . h, respectively). five caregivers ( %) were also providing care for one or more other family mem- bers in addition to the person with dementia, including children or grandchildren (n = , % of all caregivers), parents (n = , % of all caregivers) and spouses (n = , % of all caregivers). most interviews were conducted in the absence of the person with dementia (n = , %). need for information about community resources caregivers unanimously expressed a strong desire for in- formation about community resource needs for the per- son for whom they care and for caregiver self-care. with respect to the resources needed to care for the care re- cipient, caregivers frequently expressed the need for op- portunities to socialize. for example, caregivers made comments such as “[we need] some kind of a…place we can go to either meet other people to make connections or to being able to talk to someone who can help us with our challenges.” [id , ]. caregivers felt that it was particularly important for people with dementia to have the opportunity to socialize with someone other than their caregivers. as one caregiver [id , ] explained, “she probably also needs outside socialization outside of us!” another caregiver [id , ] stated, “it would be great to have someone … [who] could bring in pet ther- apy or someone to play music or read to her. you know, have someone to come in and just sit and talk about the weather or the bulls.” several caregivers noted that the mood of their loved one with dementia improved in contexts of socialization. for example, one caregiver abramsohn et al. bmc geriatrics ( ) : page of [id , ] stated, “so just getting her out to do anything that she loves is good. and we take her to plays and the movies. we just try to incorporate and include her in on everything.” another caregiver [id , ] reported “socialization. someone to come, maybe to just come and visit with him. and even that, he fusses if he knows they’re coming, but once they’re there the social graces come in.” the most common suggestions for community re- sources that would help fill this need for socialization were support groups, pet therapy, art classes and music therapy. several caregivers also reported that volunteer opportunities for a person with dementia could provide a meaningful way for them to engage with the world. for example, one caregiver [id , ] shared that her husband “always talks about volunteering… he would really like to do something and feel like he is being help- ful. you know, he thinks about all of the skills that he has or had in the building trade. [he says] ‘i could take a young man and i could show him in the backyard how to do things.’ he would really like to do something, that’s what he talks about all the time. he would like to give back.” caregivers identified fitness and dance classes, movie theaters, beauty salons and dining options as important community resources that they could use to address their own self-care needs. caregivers responded enthusi- astically about how these resources could provide a brief respite with comments such as “i love to go to the beauty shop and get my nails done.” [id , ], to “lord, i’d love to have a massage. you know? just a day to do, just me. then go to a movie, dinner, glass of wine. oh, my god, i’d be in heaven.” [id , ]. and, “line dan- cing class! that’s lovely! a lot of seniors, especially afri- can american they do that. they go out line dancing.” [id , ]. a few caregivers described wanting to engage in longer, but still modest, self-care activities that would provide them respite such as a brief vacation or an over- night stay. for example, one caregiver [id , ] stated that it would be useful to know where they could go for “a weekend or overnight. you know i’m not talking about a long cruise or anything! i don’t mean anything like that.” accessing these resources for self-care, how- ever, often required the caregiver to find outside care for the person with dementia. all caregivers expressed self-care as necessary to man- age the exhaustion of caregiving. as one caregiver [id , ] put it, “everything we do…is for our spouses [the care recipient]. i know we took that vow… but we need… something for us. ok?” another caregiver [id , ] stated, “work is my therapy. i get more of a rest at work than i do at home.” more than half of the caregivers we interviewed expressed distress over the demands of care- giving, as they discussed their need for self-care. emblem- atic of these comments was the caregiver [id , ] who stated, “right now i am miserable, i can’t—i haven’t been on a vacation since . i just haven’t—any time anybody comes to help, they are relieving my husband [the person for whom she was caring].” table caregiver sociodemographic, health and caregiving characteristics (n = ) domain and measure n (%) sociodemographic characteristics age in yearsa (median, range) ( – ) gender women ( ) men ( ) insuranceb private insurance ( ) private + medicare ( ) medicare + medicaid ( ) medicare only ( ) health characteristics self-reported health excellent, very good or good ( ) fair or poor ( ) common medical conditionsc,d high blood pressure or hypertension ( ) osteo- or rheumatoid arthritis ( ) myocardial infarction, chf or other heart condition ( ) copd or asthma ( ) caregiving characteristics relation to person with dementia adult child or grandchild ( ) spouse ( ) sibling ( ) caregiver lives with person with dementia ( ) years caring for person with dementia in community (median, range) ( – ) hours per day providing care (median, range) . ( – ) provides care for others ( ) common caregiving tasksc,e meal preparation ( ) medication management/adherence ( ) accompany to doctor’s visits ( ) grocery shopping ( ) acaregivers’ ages are not adjusted for anonymity here but are presented in the aggregate bone caregiver refused to answer this question cresponses are not mutually exclusive dfour caregivers reported no comorbidities eone caregiver did not respond to this question abramsohn et al. bmc geriatrics ( ) : page of awareness of and need for hospice care resources caregivers were also asked about their awareness of and need for hospice care resources. most of the caregivers reported being aware of what hospice was and had a positive impression of the care provided by hospice ser- vices. despite a general awareness of hospice care, many of the caregivers reported being uncertain about the spe- cific kind of services provided by hospice. for example, one caregiver [id , ] asked “…i didn’t know how in- tensive [hospice] was. do they come and they bathe them? do they just come and see that everything is okay? do they clean while they’re there? do they do more than … make sure a meal is made for them? do they do more than just administer medication?” another caregiver [id , ] asked: “i’m wondering what that’s [hospice] like…i think it’s something that should be dis- cussed, because a lot of people have not been a part of it, so they don’t know.” only a few caregivers noted neutral or negative im- pressions of end-of-life care; for example, one caregiver [id , ] stated: “there was a spiritual counselor that would come and talk to my mom. one day he asked my mom if she was ready to die. and i really hated that. i hated the word hospice.” not one caregiver in our study reported that it was inappropriate for healthcare pro- viders to discuss end-of-life care options for the person with dementia for whom they were caring. barriers to accessing community resources although caregivers were consistent in their desire for information about community resources that would sup- port opportunities for socialization for people with de- mentia as well as their own self-care, they also reported significant barriers to accessing those resources. the most commonly reported barrier to accessing community resources, both for socialization for the per- son with dementia and for caregiver self-care, was the inability to leave the person with dementia unsupervised (table ). typical of these responses was the caregiver [id , ] who stated, “i really get nervous about leaving her at home by herself.” caregivers often stressed the close attention that their loved ones needed, as with the caregiver [id , ] who explained, “my mother will go in the refrigerator and pick up anything, eat it, it be done or undone, you know. and you just gotta make sure, you know. cause she’ll pick up some hamburger undone and eat it there—come on now. so, you have to watch her, you have to keep close contact on her.” several caregivers also expressed more serious con- cerns about the safety of family members who would be left alone with the person with dementia. for example, one caregiver [id , ] stated, “in order for me to feel safe to leave him with the kids, they’d all have to be asleep. i’d have to make sure that no one would be able to wake up until i came back upstairs because once i get home i can’t leave the kids and [care recipient] by them- selves. it worries me that, first that he might do some- thing like turn on the stove, you know? but second, that if, because they are children that are and , if they do anything that aggravates him, will he become violent.” with regard to socialization, caregivers identified a range of barriers that prevented their loved ones with de- mentia from taking advantage of extant opportunities, in- cluding mental confusion, mobility issues and lack of interest. for example, one caregiver [id , ] described trying to take his wife to a swim class and reported, “so we were going to the [center name] up there for like a swimming class but she couldn’t—she couldn’t under- stand what—she couldn’t follow directions. so i have to be right there with her, for her to do what everybody else is doing. i mean, it’s not like she would even look around and see what everybody else is doing so…” caregivers also discussed changes in care recipients’ mobility as some- thing that prevented the person with dementia from accessing community resources. for example, one care- giver [id , ] explained, “he used to walk miles a day. but he can’t anymore because he’s having balance issues.” lack of interest on behalf of the person with dementia was also seen by caregivers as a significant barrier to accessing community resources. as one caregiver [id , ] explained, “i’m thinking, ‘oh there’s nothing out near me, everything is in [neighborhood] or up north.’ but that’s not true, there are things close to me but i just haven’t [had the time]…the need [for self-care] might be there but i just keep getting that resistance from my father.” facilitators of accessing community resources almost all caregivers noted that being able to at least oc- casionally rely on other caregivers to take care of or supervise the care recipient helped to facilitate their use of community resources. arrangements for additional caregiving included formal agreements with other family members or paid caregivers as well as less frequent and unscheduled offers of help. shared caregiving responsi- bilities facilitated their use of community resources by allowing them time to support the care recipient’s basic daily needs, including grocery shopping, laundry or to pick up prescriptions or other medications. as one care- giver [id , ] noted, “[it’s] hours a day. i’m there every day… i maybe take a day off when my sisters come in to town. i maybe take hours and go food shopping, we have our own laundry, i take care of that and many other particulars that have to be taken care of for her.” another caregiver [id , ] reported “no, no [i don’t have time to use community resources] unless my sisters be there with my mom. or my brother or someone while i go and pick up ma’s medication.” abramsohn et al. bmc geriatrics ( ) : page of additionally, caregivers reported that sharing caregiv- ing responsibilities facilitated information exchange about community resources, especially among family members. this type of “word of mouth” exchange was repeatedly cited as the most important source of infor- mation about the resources necessary to take care of people with dementia and usually came from a trusted source. most often caregivers reported that information about community resources was shared among care- givers (especially while attending dementia caregiver support groups), and between the caregiver and other family members including siblings, parents, children and extended family. a typical comment describing the way information about dementia passed among family mem- bers was: “so now, i do all of that and my sister who doesn’t have time to go to the meetings, because she is working, but i talk to her about it. so i pass on what i’ve learned. some of the things that we encounter, i’m like, ok i’m more familiar with this. i’ve read about this. we’ve talked about this in group. ok i kinda know what’s going on. so, that’s helped me a lot.” [id , ]. another caregiver [id , ], commenting on the importance of trading information about dementia stated: “usually i talk to people that i believe are in the same situation. i see what works for them. i talk to family. i just—where i used to be really very reserved, now if i have a need i try to speak up and i try to ask questions. you never know if you don’t ask.” sometimes the caregiver’s source was a member of the person with dementia’s healthcare team. for example, one caregiver [id , ] stated, “you gotta listen. if you have a great quality physician that has a car- ing heart, she makes great recommendations.” strategies to optimize community resource access and use caregivers were asked to view a healtherx for people with dementia that was tailored to include community resources in the neighborhood in which the health clinic was located. caregivers were asked to describe how this sample community resource guide could be improved to support their care for a person with dementia. two sug- gestions were common: to include detailed eligibility criteria on the guide and to indicate which service pro- viders are trained in dementia care needs. in discussing the importance of including health- related eligibility criteria for dementia care services, one caregiver [id , ] expressed her concern in the follow- ing way: “‘cuz [sic] i’ve heard at various places [nursing home] they won’t — they wanna take a person who can still wash themselves and put on their clothes and stuff. and if they are too far gone, they don’t wanna take em. ok? so, cuz like a person with my father’s personality— i’m gonna have to wait until something dire happens.” caregivers also asserted that including information about financial eligibility on community resource guides was important. for example, one caregiver [id , ] expressed concern in the following way, “i never apply table quotes exemplary of caregivers’ inability to leave person with dementia unsupervised caregiver characteristics inability to leave person with dementia unsupervised as a barrier to their socialization “she’s gonna have to have love and nothing but lovin’ people around her. because she would ask you the same question. you gonna get questions from her. as of late, she asks you the same question times. you know, and it takes a lot of patience.” id : -year-old daughter “if i was to leave and be gone for a week, i don’t know what she would do or who she would talk to.” id : -year-old spouse “there is days where, or there is times where during the day i have to take a deep break … and i have to remember that she has alzheimer’s, she has dementia. i have to remember that. because some of the things she says you know, it’s a constant. it’s a constant. and then every day is the same.” inability to leave person with dementia unsupervised as a barrier to caregiver self-care “my mother will go in the refrigerator and pick up anything, eat it, it be done or undone, you know. and you just gotta make sure, you know. cause she’ll pick up some hamburger undone and eat it there—come on now. so, you have to watch her, you have to keep close contact on her.” id : -year-old daughter “we’ll have a six pack, and you’ll look around and she will have grabbed the bottles of pop and she’ll drink three of them. by the time you look back again she’s got the other two! i say, ‘i can’t turn my back on you!’ you know? [laughs]. you can’t do it!” id : -year-old son “i’m runnin’ on trial by error. but i’m also now runnin’ on like ‘nahhhh imma go with you.’ and if she wants to go somewhere, then we go. so i don’t have a schedule.” id : -year-old spouse “but right now, i really get nervous about leaving her at home by herself. not so much now, because she hasn’t gotten that urge to go. she wants to go somewhere, but she hasn’t gotten that urge to just get up and go on her own.” “in order for me to feel safe to leave him with the kids, they’d all have to be asleep. i’d have to make sure that no one would be able to wake up until i came back upstairs because once i get home i can’t leave the kids and [name] by themselves. it worries me that, first that he might do something like turn on the stove, you know? but second, that if, because they are children that are and , if they do anything that aggravates him, will he become violent. so i can’t, and i have to.” id : -year-old spouse abramsohn et al. bmc geriatrics ( ) : page of for things, like trying to get something for free or some- thing for nothing. where do you go when you are will- ing to pay on a sliding scale?” another caregiver [id , ] shared this sentiment: “are there programs like the tanf [temporary assistance for needy families] pro- gram where you can apply if you are on a certain tem- porary family assisted fee? if you qualify for that, how do you qualify for it? who do you contact for it? and they will give you certain monies to help you out...?” in addition to eligibility criteria, caregivers consistently stressed that it was important that service providers be trained in dementia care needs. for example, looking at the sample community resource guide, one caregiver [id , ] stated, “i don’t think if anywhere that we went, if they weren’t trained in recognizing the dementia and the habits of the people that have it…if they weren’t trained in it, then that’s not a place where somebody might wanna go.” one caregiver [id , ] reported experiencing a hos- tile interaction with untrained service providers at a community-based organization where the person with dementia was misunderstood: “they have all kind of programs over there. but, for a person with dementia, the [early] onset dementia or the alzheimer’s, i’m find- ing that some people don’t really know anything about it. it’s not like a well-known thing… and a lot of people that i come across when i’m with her… sometimes she says things and people say ‘no ma’am, no.’ you know they haven’t, they haven’t got a clue!” in contrast, one caregiver [id , ] reported a positive experience with a community-based art class designed for people with dementia and their caregivers. she stated “the instructor is fantastic. she’s clearly got a lot of experience working with a range of people. she is just very personable.” discussion urban-dwelling african american caregivers of home- dwelling people with dementia in the current study need more and better quality information about caregiving and self-care resources in their community. this finding corroborates evidence from prior studies that have fo- cused on caregiving-specific needs [ , , ] and adds knowledge about the kinds of resources these caregivers need for their own wellness and self-care. african american caregivers in our study specifically identified a desire for volunteer opportunities that could include the care recipient. the idea to enable volunteerism among home-dwelling people with dementia is unique to the caregiving literature and consistent with maslow’s the- ory of human motivation, which specifies the human need for self-esteem and self-actualization [ ]. the inability to leave the person with dementia unsuper- vised is a common concern among caregivers [ , , ], and was the main barrier to community resource use identified in this study. although prior qualitative studies of african american dementia caregivers living in both rural and urban areas found a lack of knowledge [ ] or limited availability [ ] of local resources as common barriers to self-care, neither surfaced as a major barrier in this study. rather, caregivers focused on the concern that local busi- nesses and organizations were not well informed about or prepared to serve people with dementia. this finding reso- nates with that of prior studies, including one community- based effort undertaken by the university of kentucky to better understand barriers to accessing dementia services by african american people with dementia and their care- givers. through qualitative focus groups with key people in the community, they learned of the stigma associated with having memory problems and other mental health issues among african american people, often resulting in hesi- tancy to access care [ ]. shared caregiving responsibilities, while often informal and described as inadequate in terms of providing relief for most caregivers, surfaced as the main facilitator of community resource use and promoted information ex- change. similarly, oliveira et al. ( ) identified shared caregiving responsibilities as a facilitator of caregivers’ quality of life by providing respite and facilitating de- cision making [ ]. in the current study, learning about community resources from a trusted person also promoted resource use, suggesting that this in- formation should be delivered to caregivers by a trusted person and that caregivers would value a tool that would enable them to share the information with others. interestingly, in two prior studies of the com- munityrx intervention, we found that half of people who received the intervention shared the information with others [ , ]. by asking caregivers for feedback on the healtherx for people with dementia, we uncovered demand for a broader variety of community resources than identified in prior studies. activation of social, entertainment and personal self-care services and activities that could in- clude both the caregiver and the care recipient and pro- vide caregiver respite requires engagement and awareness among proprietors in sectors beyond human and social services. beauty salons and barber shops, among the most prevalent business types on chicago’s south side [ ], have been successfully engaged in health promotion efforts to improve hypertension and cancer screening rates, especially in african american communities [ – ], suggesting the possibility that these types of businesses could be engaged to support people with dementia and their caregivers. education and mobilization of these economic sectors to better support caregivers and people with dementia aligns with the call for more dementia-capable and dementia- friendly communities [ ]. abramsohn et al. bmc geriatrics ( ) : page of caregivers also endorsed a need to understand which community resources are indicated, or for which services the care recipient is eligible, at different stages of de- mentia illness. this finding resonates with a qualitative analysis by granbo and colleagues who identified the need for resources that provided “individualized sup- port” for people with dementia that took into account their current physical abilities as opposed to providing “passive care,” exemplified as resources that were not meaningful or stimulating for the person with dementia [ ]. similarly, potter and colleagues found african american caregivers were less likely to use community supports early in the course of the disease but were open to learning about resources for future needs [ ]. al- though prior caregiver intervention studies [ , , ] in- cluded dementia education and community resource information components, none describes providing stage-specific resource referral information. furthermore, few prior studies have elicited input from caregivers of people with dementia on when and how to deliver information about or referrals to hospice care. prior evidence suggests that african american caregivers may be less receptive to or more skeptical of hospice care [ , ]. our study specifically probed care- givers on the topic of end-of-life care, including hospice, revealing a substantial unmet need for information and no resistance to discussing the topic. the alzheimer’s association recommends that conversations with fam- ilies about end-of-life care begin at diagnosis and con- tinue throughout the progression of the disease, but recognizes that end-of-life care discussions are often not initiated until the patient’s admission to assisted living or other formalized care [ ]. this recommendation is particularly pertinent for african americans, who bear a higher disease burden, may be less likely to access end- of-life care options and are more likely to rely on infor- mal caregivers for support [ , ]. including end-of-life resources on the healtherx for people with dementia is a potential tool to help facilitate and normalize these conversations earlier in the course of the disease. limitations the findings of this single site study should be consid- ered in light of certain limitations. findings may not be generalizable to other populations, including african american caregivers living in higher income or more di- verse or rural communities. the study was conducted at a specialized geriatric care clinic; even still, caregivers in- dicated a broad range of unmet needs. although the sample size was small, it was diverse in terms of age, caregiving intensity and relationship of the caregiver to the person with dementia, demonstrating similar infor- mation and resource needs from various adrd care- givers’ perspectives. because some recruitment occurred in a group setting, we are unable to fully quantify the number of caregivers approached for participation and reasons for deciding not to participate in the study. theme saturation was reached and all participants were currently providing care, which should limit recall bias. conclusion informal caregiving presents challenges to adrd care- givers’ capacity to manage their own health and well- being. this study identifies ways that community re- source referrals by clinicians can be improved to meet african american adrd care recipient and caregiver needs. for african american adrd caregivers to benefit from community resource referral interventions, this study suggests the information should be delivered by a trusted source, eligibility criteria should be clear and community-based service providers should deliver dementia-capable services. abbreviations adrd: alzheimer’s disease and related dementias; napa: the national alzheimer’s project act acknowledgments not applicable. authors’ contributions ema and stl contributed to the conception and design of this research, the acquisition, analysis and interpretation of data and drafted and substantively revised the manuscript. jj and kmp contributed to the acquisition, analysis and interpretation of data and drafting of the manuscript. tk contributed to the conception and design of this research, and to the acquisition and interpretation of the data. was contributed to the analysis and interpretation of data and drafting of the manuscript. all authors approved the submitted version of this study and agree to be personally accountable for their contributions and ensure that questions related to the accuracy or integrity of any part of the work, even ones in which the author was not personally involved, are appropriately investigated, resolved, and the resolution documented in the literature. authors’ information ema is director of research and data governance in the lindau laboratory in the department of obstetrics and gynecology at the university of chicago. her research expertise includes survey development and implementation, deploying evidence-based practices for implementation of research protocols to effectively engage a diverse caregiving population in the clinical setting. her research interests include the study of health information technologies to support caregivers’ self-care. jj is an assistant professor in the department of health sciences at depaul university. she earned her phd in medical anthropology from the university of chicago. much of her research focuses on how low-income residents in urban areas access health care. kmp received her b.a. in medical anthropology from creighton university. she works as a researcher and operations manager in the lindau laboratory at the university of chicago where she is responsible for coordinating the implementation and successful execution of federally funded research. her research interests include familial caregiving in the context of food insecurity and dementia. tk is an assistant professor of medicine in the section of geriatrics and palliative medicine in the department of medicine at the university of chicago. she is a primary care clinician educator who focuses on cognitive impairment, polypharmacy, and interprofessional education. as is a medical student at the university of chicago pritzker school of medicine. her research interests include inter-professional medical education, frailty and performance metrics, and end of life care. abramsohn et al. bmc geriatrics ( ) : page of stl is a tenured professor of obstetrics and gynecology, medicine-geriatrics and palliative medicine, and the comprehensive cancer center at the university of chicago medical center and pritzker school of medicine. in addition to the study of female aging and sexuality, her laboratory focuses on the health and health care of marginalized populations across the life course. funding this work was supported by the national institute on aging [grant numbers r ag , r ag - s and r ag ]. the content is solely the responsibility of the authors and does not necessarily represent the official views of the national institutes of health. availability of data and materials the datasets generated and/or analyzed during the current study are not publicly available due to the qualitative nature and to protect the confidentiality of the participants. ethics approval and consent to participate the university of chicago institutional review board approved this study (irb – ) and all participants provided written documentation of informed consent. consent for publication the site data presented in fig. are publicly available data. these are public serving businesses and organizations, not human subjects. sample “healtherx” documents have been published previously (lindau et al., , health affairs; lindau et al., , ajph; feldmeth et al., , jamia). competing interests under the terms of prior department of health and human services, centers for medicare & medicaid services funding ( c cms ), we were expected to develop a sustainable business model which will continue and support the model that we tested after award funding ends. dr. stacy lindau is the founder and owner of a social impact company nowpow, llc. nowpow, llc is not supported through cms or other federal funding. neither the university of chicago nor university of chicago medicine is endorsing or promoting any nowpow/mapscorps entity or its business, products, or services. all other authors have no conflicts of interest to disclose. author details department of obstetrics and gynecology, the university of chicago, s maryland ave., mc , chicago, il , usa. department of health sciences, depaul university, chicago, usa. department of medicine, section of geriatrics & palliative medicine, the university of chicago, chicago, usa. the university of chicago pritzker school of medicine, chicago, usa. departments of obstetrics and gynecology and medicine-geriatrics, the university of chicago, chicago, usa. received: june accepted: october references . barnes ll, bennett da. alzheimer’s disease in african americans: risk factors and challenges for the future. health aff proj hope. ; 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( ): – . . gitlin ln, winter l, dennis mp, hodgson n, hauck ww. a biobehavioral home-based intervention and the well-being of patients with dementia and their caregivers: the cope randomized trial. jama. ; ( ): – . . cagle jg, lamantia ma, williams sw, pek j, edwards lj. predictors of preference for hospice care among diverse older adults. am j hosp palliat med. ; ( ): – . . johnson ks. racial and ethnic disparities in palliative care. j palliat med. ; ( ): – . . alzheimer’s association campaign for quality residential care. dementia care practice recommendations for assisted living residences and nursing homes - phase end-of-life care. . https://www.alz.org/media/ documents/dementia-care-practice-recommend-assist-living- -b.pdf. accessed nov . . mayeda er, glymour mm, quesenberry cp, whitmer ra. inequalities in dementia incidence between six racial and ethnic groups over years. alzheimers dement j alzheimers assoc. ; ( ): – . publisher’s note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. abramsohn et al. bmc geriatrics ( ) : page of https://doi.org/ . / https://doi.org/ . / https://www.alz.org/media/documents/dementia-care-practice-recommend-assist-living- -b.pdf https://www.alz.org/media/documents/dementia-care-practice-recommend-assist-living- -b.pdf 	abstract 	background 	methods 	results 	conclusions 	background 	methods 	research participants 	study design and recruitment 	data collection and analysis 	results 	caregiver characteristics 	need for information about community resources 	awareness of and need for hospice care resources 	barriers to accessing community resources 	facilitators of accessing community resources 	strategies to optimize community resource access and use 	discussion 	limitations 	conclusion 	abbreviations 	acknowledgments 	authors’ contributions 	authors’ information 	funding 	availability of data and materials 	ethics approval and consent to participate 	consent for publication 	competing interests 	author details 	references 	publisher’s note centro di referenza nazionale per gli interventi assistiti con gli animali, istituto zooprofilattico sperimentale delle venezie, viale dell'università , legnaro (pd), italy * corresponding author at: centro di referenza nazionale per gli interventi assistiti con gli animali, istituto zooprofilattico sperimentale delle venezie, viale dell'università , legnaro (pd), italy. tel.: + , e‑mail: lfarina@izsvenezie.it. marta de santis, laura contalbrigo, martina simonato, mirko ruzza, marica toson and luca farina* veterinaria italiana , ( ), ‑ . doi: . /vetit. . . accepted: . . | available on line: . . parole chiave interventi assistiti con gli animali, animali in società, terapie complementari, realtà italiane iaa, animali da compagnia. keywords animal assisted interventions, animals in society, complementary therapies, italian aai providers, pets. riassunto nel corso degli ultimi cinquant'anni, gli interventi assistiti con gli animali (iaa) hanno avuto una notevole diffusione nei paesi occidentali, attirando l’attenzione della comunità scientifica e del pubblico: un’evoluzione accompagnata dall’incremento del numero di associazioni pertinenti. qual è lo stato attuale degli iaa in italia? quante realtà hanno a che fare con gli iaa? quali sono i professionisti e gli animali coinvolti? i risultati del questionario riportati in questo articolo hanno l'obiettivo di rispondere a queste domande, fotografando la distribuzione e le principali caratteristiche degli iaa nel territorio italiano. secondo i intervistati, il settore ha visto una notevole espansione negli ultimi venti anni. le realtà che si occupano di iaa, nella maggior parte dei casi associazioni o centri specializzati che lavorano soprattutto con cani ed equidi in attività assistite con gli animali (aaa) rivolte a disabili e a bambini, si trovano principalmente nel nord e nel centro del paese. il quadro del settore appare ancora frammentato, in particolare per quanto riguarda l’équipe dei professionisti coinvolti e la loro formazione; tuttavia, la recente messa a punto di linee guida nazionali da parte dello stato, delle regioni e delle province autonome di trento e bolzano ha l'obiettivo di uniformare il campo e definire le migliori pratiche per ciascun tipo di intervento. summary animal assisted interventions (aai) have become increasingly popular in western countries during the last fifty years, attracting a lot of attention both from the general public and the scientific community. in italy, similarly to other countries, this evolution has been accompanied by the diffusion of associations delivering aai. what is the current state of aai in italy? how many realities are dealing with aai? what professionals and animals are involved? the results of the questionnaire here reported have the objective to answer these questions, outlining a snapshot of the distribution and the main features of aai within italian territory. according to the respondents, the sector has seen a remarkable expansion over the last twenty years. aai providers are located mainly in the north and centre of the country, the majority of them are arranged in associations or aai specialized centers and work mainly with dogs and equids in animal assisted activity (aaa) programs addressed to disabled people and children. the picture of the sector still appears fragmented in particular regarding team of professionals involved and their training; nonetheless, the recent set up of national guidelines by the italian authorities has the objective of standardizing the field and defining best practices for each type of intervention. interventi assistiti con gli animali: la realtà italiana animal assisted interventions in practice: mapping italian providers ministers (dpcm ) and subsequently, in , it established the national reference center for animal assisted interventions (nrc aai) with the mandate of promoting research into standardized operating protocols, strengthening collaborations between human and veterinary medicine, enhancing knowledge on the applicability of the interventions in given categories of patients, organizing and managing training pathways, collecting data and disseminating information about aai among the international scientific community. moreover, in an agreement between the italian government, the regional authorities and the autonomous provinces of trento and bolzano was sanctioned, setting up guidelines on aai (italian national guidelines for animal assisted interventions ). these guidelines aim at recording and guiding the development of aai sector through a dialogue among the institutions, all the stakeholders and the scientific world, in order to make the most of the resources and the interest which is blooming throughout all these levels. to achieve this goal, these guidelines foresee a) specific aai training for each professional involved in the design and realization of aai (veterinarian, animal handler, etc.); b) the establishment of a regional register of traders and facilities; c) health, welfare and behavioral requirements for the animals involved; d) the evaluation of the results of projects carried out, where possible, by scientifically validated indicators. at present this agreement is being transposed and implemented by every italian region. to our knowledge, there are no other countries in the world having regulated aai at national level. in this framework, since the nrc aai has conducted an investigation on aai italian providers, through its website, with the aim of supporting the accessibility of data about aai practitioners, aai centers’ location and services to general public. thanks to this initiative, it was possible to collect through a questionnaire some information about each provider, allowing us to outline the current state of aai in italy, the realities dealing with aai, the professionals and animals involved. the main objective of this paper is to outline a snapshot of the distribution and the main features of aai on the italian territory. materials and methods participants the sample comprised aai italian providers who introduction animal assisted interventions (aai), generally defined ‘pet therapy’ or médiation animale in france, have become increasingly popular during the last fifty years in western countries, attracting a lot of attention both from the general public and the scientific community (michalon ). currently, aai are often used to reach therapeutic purposes as effective supports during rehabilitation processes, leading to physical, psychological and social benefits (muñoz lasa et al. ) or exploited in education, prevention and community efforts (beetz , komorosky and o’neal ). since boris levinson’s article ‘the dog as a co‑therapist’ (levinson ) was published, the benefits achievable through the human animal relationship have been largely investigated for several categories of patients, as for example children with autism spectrum disorder (borgi et al. , gabriels et  al. , o’haire ), elderly patients affected by dementia or psychiatric disorders (bernabei et  al. , majić et  al. , virués‑ortega et  al. ), and alcohol/drug addicted inmates (allison and ramaswamy , contalbrigo et  al. , mercer et  al. ). therefore, aai are now introduced in many different settings, including schools, nursing homes, hospitals, prisons, daycare centers and social farms (cirulli , julius et  al. ), even though a need for more evidence based research still persists (fine and beck ). from the social point of view, this strong development of aai is characterized by “a push by enthusiastic advocates rather than a pull by prescribing physicians” as commented by palley et al. ( ) on animal assisted therapy (aat) in human medicine: a sort of bottom‑up dynamic has run over this field, in which the growing interest about the topic among the general public have elicited the necessity to regulate and structure the sector, taking concern of many issues about the involvement of animals in activities related to human health and wellbeing and stressing ethical (italian national committee for bioethics ), safety (bert et al. ) and economic arguments (clower and neaves ). hence, at international level, some associations and organizations have developed and established standards and best practices for aai, as in the case of the white paper of the international association of human‑animal interaction organizations (iahaio ), or the animal‑assisted interventions code of practice for the uk, edited by the society for companion animal studies (scas ). similarly to other western countries, also italy has recently experienced an increase in the diffusion of associations delivering aai. therefore, in , the italian ministry of health made a first step towards the legitimization of the animals’ role in human emotional life and their therapeutic value through an official decree of the president of the council of animal assisted interventions in italy de santis et al. veterinaria italiana , ( ), ‑ . doi: . /vetit. . . d.p.c.m. febbraio , recepimento dell'accordo recante disposizioni in materia di benessere degli animali da compagnia e pet‑therapy [transposition of the agreement related to the welfare of pet animals and pet therapy]. off j, , ‑ ‑ . results the results here reported refer to italian aai providers that filled in the questionnaire until june . concerning their geographical distribution, the regions with higher number of providers are: lombardy with realities ( %), veneto with  ( %) and piedmont with ( %) (figure  ). respondents were mostly associations (n  =  ) and aai specialized centers (n  =  ) that represent together the % of aai providers, while the others are freelance, public health services, care farms and other (figure  ). most of providers have started their activity in aai from to , with a peak of realities initiated from to (figure ). according to the respondents, ( %) of them have a partnership with local health services, while do not and did not respond to this question. pearson chi‑squared test showed no association (p‑value  =  . ) between the typology of provider (association, aai center, etc.) and the collaboration with local health services. moreover, within the respondents, declared to be members of national reference associations; when asked for more details about these reference associations, it resulted a high variability, but the most frequently volunteered to complete an on‑line questionnaire. all the data collected have been treated in accordance with the current legislation in order to guarantee the security and privacy. materials a four section questionnaire was developed to collect information about aai italian providers. the first section picked up contact details of the respondents, type of organization and year of start‑up. the second section comprised questions pertaining to their structures: whether or not they have residential animals, what species and the number of animals involved in the activities. the third section was composed by forced‑choice questions which investigated professionals involved, and whether or not they have had specific training in aai. open choice questions were formulated to deepen the type of training followed by each professional. the fourth section comprised questions pertaining projects: typology (animal assisted activity: aaa, animal assisted education: aae, aat ), number of projects within the last two years, clients/patients’ categories, and forced‑choice questions about the affiliation to national reference associations in this field, collaboration with local health authorities and presence of a rate table. procedure data were collected via an online questionnaire between january and june . a link to the questionnaire was posted in the nrc aai website (http://www.izsvenezie.it/temi/ a l t r i ‑ te m i / i nte r ve nt i ‑ a s s i s t i t i ‑ co n ‑ g l i ‑ a n i m a l i / censimento‑nazionale/): the compilation of the questionnaire gives the opportunity to be displayed in the map on the nrc aai website, which shows aai italian providers and their contacts. the initiative was publicized in through nrc aai website, and the invitation to participate to the questionnaire was sent through the direct newsletter to all subscribers to the site. moreover, the opportunity to participate to the study has been disclosed during these years in all public contexts in which the nrc aai was present. data analyses all data collected were stored, validated and analyzed using excel and stata . . a descriptive analysis has been performed, calculating frequencies for categorical variables. pearson chi‑squared test has been calculated to evaluate the association between categorical variables. de santis et al. animal assisted interventions in italy veterinaria italiana , ( ), ‑ . doi: . /vetit. . . figure . distribution of aai providers throughout italian regions (n =  respondents). animal assisted interventions in italy de santis et al. veterinaria italiana , ( ), ‑ . doi: . /vetit. . . horses), and are located in veneto, piedmont, lazio and abruzzo regions. realities that have between and animals, both residential and non‑residential, are . according to the respondents, of realities, % declared to do aaa projects, % aae, % aat. seven providers did not specify the typology of aai delivered. we asked the respondents to specify to what categories of participants their interventions are addressed. it resulted that aaa is addressed mostly to people with disability and school aged children, aae to school and developing aged children, aat to people with disability and children in developing age (figure ). the total amount of projects delivered is , , that can be split off into aaa, aae, aat projects. concerning aat, we divided the projects according to patients’ category and the principal species involved (dogs, horses, donkeys, rabbits and cats). the most common aat interventions result with dogs for disabled people ( projects) followed by aat with dogs for developing age indicated were csen (http://www.csencinofilia. it/), apnec (http://www.apnec.it/) and siua (http:// www.siua.it/). according to the respondents, dogs are involved most frequently in aai in general, followed by horses and donkeys (figure ). looking at the providers that declared to have residential animals, realities have animals in their structures ( . %), have not ( . %) and did not respond ( . %). within them, declared to involve also visiting animals. most of residential animals are again dogs (n =  ), horses (n =  ) and donkeys (n =  ). concerning the distribution of the animals involved through italian regions, the number of animals for each region results higher in veneto (n  =  ), piedmont and lazio. aai providers with residential animals have animals on average, while there are only four providers that declared to have more than residential animals (mostly dogs, donkeys and association % aai center % not compiled % freelance % other % public health services %care farms % figure . percentages per typology of aai providers (multiple choice, n =  ). other: residential educational community for children, social enterprise, nursing home, spinal unit. ≤ - - - - - figure . number of italian aai providers according to years of institution (classes of years). dog horse cat donkey rabbit other figure . frequency per type of animal involved in responding italian aai providers (multiple choice, n = ). other: guinea pig, chicken, goat, ferret, pig, sheep, bee, duck, chinchilla, gerbil, goose, parrot, turtle, fish. elderly disability developing age hospital patients figure . number of responding italian realities using aat per category of participants (n = , not specified). de santis et al. animal assisted interventions in italy veterinaria italiana , ( ), ‑ . doi: . /vetit. . . implementation of aai legislation, promulgating regional laws and official documents concerning the field. on the other hand, this distribution could be affected by the geographic proximity of the nrc aai (which is in veneto), therefore providers located in these areas could have known more easily about the opportunity to register themselves. regarding the typology of aai providers, more than half of them ( %) are associations involved in social promotion or amateur sport clubs, often non‑profit; this feature reflects the nature of aai phenomenon in italy, that is often animated by people providing volunteer work. another relevant portion of providers ( %) is classified as aai specialized centers: these are facilities with both residential and non‑residential animals, in which aai take place routinely. in this framework, % of providers collaborate with local health services, revealing that aai are considered by the italian national health system as possible steps of rehabilitative processes. the scenario of italian aai providers is further enriched by their attitude towards aai national networks: these are represented by some big italian associations that have been historically dealing with human/animal interaction, e.g. siua, apnocs, lapo, etc., or with dog lover/equestrian sport field (csen, apnec, fise). approximately, half of the respondents refer to them as a clear sign that aai providers need to aggregate and build dynamic networks to exchange experiences and challenges at national level. indeed, only few of them indicate affiliations with international associations such as animal assisted intervention international (aaii), iahaio, pet partners suggesting the predominance of a national perspective in the field. concerning the species involved, dogs result to be the most frequently engaged in aai. of course, in our country, dogs are . % of the total amount of pets living in italian families ( . million), exceeded only by cats with . million (assalco‑zoomark ), therefore children (   projects) and therapeutic horseback riding addressed to disabled people ( projects), as shown in figure . then we listed the professionals working in aai italian realities and, as shown in figure , animal handlers ( %), psychologists ( %), animal (dog/ horse) trainers ( %) and veterinarians ( %) are most frequently represented. . % of providers performing aat and . % of providers performing aae declared to make use of a multidisciplinary team composed by all the professionals laid down by the italian national guidelines. notably, providers out of ( %) declared to deliver aat with the support of a specialized medical practitioner. as for aai training, the respondents declared that % of animal handlers and trainers, % of psychologists and % of medical practitioners/ physicians followed a specific training in aai. finally, more than half of the respondents ( %) declared to have a rate table for interventions (n = ). discussion aai have strongly developed both at italian and international level during the last decades. since , italian aai providers have increased throughout the country, especially in some regions of the north and centre. on the basis of our study, the territories with the highest number of providers are lombardy ( %), veneto ( %) and piedmont ( %), followed by tuscany ( %), lazio ( %) and emilia romagna ( %). this distribution could reflect the great sensitivity of these territories towards aai: their regional authorities have been historically involved in aai development within their communities and they were particularly active in the dog ( ) horse ( ) donkey ( ) rabbit ( ) cat ( ) elderly disability developing age hospital patients figure . number of aat projects delivered by italian aai realities (n =  ), according to the animals involved and the categories of participants. in brackets: number of providers working with the species. sp ec ial ize d do ct or ve te rin ar ian ps yc ho lo gi st pr of es sio na l ed uc at or do g/ ho rse tra in er an im al ha nd ler yes no not answered figure . personnel involved in aai in responding italian realities (n =  ). animal assisted interventions in italy de santis et al. veterinaria italiana , ( ), ‑ . doi: . /vetit. . . institutionalized frail elderly patients assigned to a cat assisted therapy program. however, yet, little scientific research has focused on cats in the field of human animal interaction and the results are sometimes conflicting (da silva garcia and martins ). on the other hand, rabbits are particularly appreciated for their small size and toy appearance, even if particular attention should be paid to their welfare during interventions (loukaki et al. ). the five species mentioned above (dog, horse, donkey, cat, rabbit) are cited in the italian national guidelines and they are at present the only ones admitted to aat and aae in our country, besides specific training courses are mandatory for their handlers. however, according to the respondents, there are other species that are traditionally involved in aai (guinea pigs, chicken, goats, ferrets, etc.): these animals still require particular evaluations by national authorities concerning their safety and welfare before they could become eligible for aat and aae. finally, the fact that more than a half ( . %) of aai providers declared to hold residential animals alerts to the need for adequate attention to their housing and husbandry, in order to ensure animal health and well‑being, as well as users’ safety. therefore the italian national guidelines set up specific structural and management requirements for aai centers with residential animals, which have to get a medical clearance by local health authorities. concerning the typology of aai, % of providers declared to do aaa, % aae, % aat. according to the italian guidelines, aat should be characterized by a medical prescription and therapeutic objectives, while aae has specific educational goals; both are monitored and assessed by means of precise tools under the guidance of specific professionals. on the other hand, aaa has recreational and socialization objectives: the reduced need for planning and designing due to their relatively simple aims may explain the predominance of aaa programs among the respondents. we also speculate that the number of aat and aae projects could be overestimated, in light of the fact that the classification of the various types of interventions was only recently ( ) introduced by the national guidelines and so it may have not yet become part of the common mentality as a substitute for the more familiar, but too vague expression ‘pet therapy’. the target population of aai project is various, but disability and scholar age are the most cited. according to the respondents, the most frequent aat programs are canine assisted therapy addressed to disables and children, and equine assisted therapy for disabled people. this trend corresponds to the international scientific literature with the prevalent involvement of children with physical and mental disabilities: for example, children with autism they are largely represented, but their role in aai is supported by their symbiotic relationship with humans, which seems to date back to , years ago (thalmann et  al. ). indeed, dogs’ ability to respond to human directions is nowadays exploited in various contexts, including security work, moving livestock, and assisting humans with disabilities (payne et  al. ). not by chance, the aforementioned boris levinson’s article, which is considered to be the first benchmark of pet therapy, is entitled ‘the dog as a co‑therapist’. as internationally, also in italy aai projects and researches involving dogs are widely documented, in particular with children in hospitals (vagnoli et al. , calcaterra et  al. , palestrini et  al. ), with adolescents (stefanini et al. ) and geriatric patients (berry et al. , mossello et al. ). among the most involved species in aai, horses and donkeys are placed in second and third place, respectively, but the difference is very limited. the human‑horse relationship, too, has a long history and horseback riding is getting very popular in therapeutic riding programs during the last years (hausberger et  al. ). equine‑assisted interventions include hippotherapy, educational riding and vaulting, sport riding for the disabled, driving and equine‑facilitated psychotherapy. in italy, therapeutic horseback riding has been used in rehabilitation since , but in the last twenty years it has seen a great development at organizational, scientific and formative levels (pasquinelli ). as for donkeys, this species has seen a new interest in recent years, due to the development of onotherapy as confirmed in our study: since the s, the number of donkeys bred in italy has fallen drastically because of the increasing use of machinery in agriculture and the depopulation of rural areas. in the field of aai, donkeys are particularly valued for their unique characteristics: as stated by rose and colleagues (rose et al. ), their size and physical structure, together with the neotenic aspect, make them an unavoidable but not intimidating interlocutor with a physically welcoming acceptance. moreover, in front of a new situation, donkeys seem to be instinctively curious, rather than impulsive or anxious. a study from borioni and colleagues (borioni et  al. ) evaluating the efficacy of equestrian rehabilitation and onotherapy on physical and psycho‑social performances of subjects affected by intellectual disability, concluded that there is an improvement in autonomy and social integration for subjects undergoing horse and donkey therapy. onotherapy, thus, is presented as a suitable alternative to equestrian therapy. according to the respondents, cats and rabbits result to be involved less frequently in aai. a study by stasi and colleagues (stasi et  al. ) reported an improvement in depressive symptoms and a significant decrease in blood pressure values in de santis et al. animal assisted interventions in italy veterinaria italiana , ( ), ‑ . doi: . /vetit. . . providers, collected through a previous survey conducted by the italian nrc aai in the : a comparison with our data could be useful to give a glance to the spread of aai in italy during the last four years. this study confirms our results showing that lombardy ( %) and veneto ( %) are the regions with the highest number of aai providers. considering the typology, the majority of them are endorsed to be associations, with a small percentage of public health authorities involved. author conclusions underline the heterogeneity of aai italian realities and the necessity for the setting up of guidelines and standardized protocols. this path has been effectively followed during subsequent years, culminating with the aforementioned agreement of march . another survey was conducted in the emilia romagna region (cirulli et  al. ). it is difficult to compare our results with that report, because of different sampling and methods, but in accordance with our study, dog resulted to be the most involved species; the professionals involved were educators, veterinarians and psychologists above all, and the patients were mainly children and elderly with disabilities. a research of international literature showed no similar studies in other countries. this study therefore seems to be the first with these characteristics. there are, indeed, some surveys conducted in specific aai contexts: for example, a recent study by schuurmans and colleagues (schuurmans et  al. ) investigated aai in dutch nursing homes and found that % of nursing homes respondents (n =  ) used aai in one way or another. similarly to our study, the species that is most involved in dutch nursing homes is dog, but horses and donkeys were not considered in that survey due to the evident difficulty to introduce these big animals in that kind of setting. moreover, data of a survey carried out in france in , revealed that % of nursing homes ( out of , interviewed) have aai carried out with dogs and that , establishments ( %) have a constant presence of animals within the premises (kohler ). other studies were conducted earlier specifically in the field of pet‑assisted psychotherapy (mason and hagan , rice et  al. ). as it can be concluded from this comparison, the species, the personnel and the patients/clients involved strongly depend on the context in which aai are delivered, which makes the comparison between different territories – and cultures – very difficult. finally, it is worth mentioning a master thesis by schlote (schlote ) that tackles the topic with a thorough survey on animal‑assisted therapy and equine‑assisted therapy/learning in canada. the ‘state of art’ presented for canada in coincides, for some aspects, with the results of our study: for example, the animal species involved in aai or, more generally, some considerations on this field. in fact, spectrum disorders (davis et  al. , berry et  al. ), with or at risk for mental health problems (hoagwood et  al. ), hospitalized children (chur‑hansen et  al. , vagnoli et  al. ), or in pedagogical/educational programs (bone ). as for the professionals involved, aai providers declared to rely mostly on animal handlers ( %), psychologists ( %) and animal (dog/horse) trainers ( %), while the involvement of physicians is still small. even among those who claimed to deliver therapy, less than half declared to collaborate with physicians, whose only % followed a specific training for aai. in a survey on italian medical practitioners’ attitude towards aai, the majority of practitioners ( %) stated that they would like to attend training or refresher courses on aai (pinto et al. ). these results open the discussion to some considerations on the multidisciplinary team that is required for aai. depending on the delivery model used, professionals can play different roles in the aat/ aae setting. as stated by brooks (brooks  ) we can distinguish a diamond model and a triangle model: in the diamond model, the medical, psychological or educational professional works in partnership with the animal handler, while in the triangle model he works without the assistance of an animal handler. therefore, the triangle model requires the professional to assume the roles and responsibilities on both sides of the balance. as for aat/aae, the national guidelines are formulated on the basis of the diamond model, so they provide the presence in the setting of both the animal handler and the professional who is referent for the patient/client. this model guarantees more safety on the setting, since there is one person that is responsible for the human and one person responsible for the animal side. we are now witnessing the transition from a field that was often based on forms of voluntary assistance to structured interventions with specific therapeutic or educational targets and the involvement of a multidisciplinary team with specific skills. as shown by our data, only . % of aat and . % of aae providers have a team with the composition set by the italian guidelines. therefore the involvement of medical, educational or psychological professionals should increase. indeed, the diamond approach raises some concerns about the economic sustainability of interventions for the general public and a reflection on the opportunity that they could be partially tap into the health system funds. for the moment, some more structured associations (just over %) already have a tariff for their performances. comparison with other studies very little comparable research is available. as for italy, siliprandi (siliprandi ) published data from animal assisted interventions in italy de santis et al. veterinaria italiana , ( ), ‑ . doi: . /vetit. . . another limit is given by the period of time for data collection: since we refer to a period of about years, some of the questions and answers could have become obsolete over time. future research could focus on a comparison of the italian situation after the implementation of the national guidelines on aai, since they foresee an official data flow from the providers to nrc aai, through the regional authorities. finally, it would be interesting to compare aai in italy with other national contexts, in order to bring out similarities and differences in the approach to this discipline. conclusions this paper outlines a snapshot on the current status of aai in italy: over the last twenty years, the sector has seen the flourishing of associations and centers that provide aai mainly with dogs and horses and addressed especially to people with disabilities and children. this development was accompanied by a growing attention by researchers and institutions in the effort to standardize the field through national guidelines. one of the biggest challenges is currently represented by the definition of the responsibilities and competences that each professional involved in the multidisciplinary team should have, depending on the type of intervention (therapeutic, educational or recreational), to safeguard the health and welfare of both patients/users and animals involved. the implementation of the guidelines at regional level is likely to lead to a further evolution of the sector, which will be interesting to analyze in detail and compare with other international experiences. schlote concludes in her work that “the field of aai in canada is still in flux. similar to the situation in the united states, the field is fragmented, disjointed, unmonitored, lacking of any clear direction, and facing a number of challenges that many believe to be impeding its evolution into a discipline that is more widely recognized and accepted.” although this fragmentation and the state of constant change are also evident in the italian context, in recent years the stage has been set for a change of approach and a recognition of this discipline. limitations of the study and future research this study has several limitations because it was realized to make available a practical and useful instruments to general public, to find aai centers and associations located in italy and not to collect data for a survey. therefore, the representativeness of the sample could be discussed since the questionnaire is based on voluntary participation through an internet page, it is inevitably limited firstly to individuals with access to the internet, and secondarily to those who heard about the study. on the other hand, it must be underlined that participants are still distributed throughout italy and the initiative was advertised in every public situation where nrc aai participated, just to ensure the widest possible dissemination of information. 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metallo-radioisotopes: current applications and prospects for development of new agents. | semantic scholar skip to search formskip to main content> semantic scholar's logo search sign increate free account you are currently offline. some features of the site may not work correctly. 	doi: . /c dt f corpus id: multimodal radio- (pet/spect) and fluorescence imaging agents based on metallo-radioisotopes: current applications and prospects for development of new agents. @article{thorpgreenwood multimodalr, title={multimodal radio- (pet/spect) and fluorescence imaging agents based on metallo-radioisotopes: current applications and prospects for development of new agents.}, author={flora l thorp-greenwood and m. coogan}, journal={dalton transactions}, year={ }, volume={ }, pages={ - } } 	flora l thorp-greenwood, m. coogan 	published 	chemistry, medicine 	dalton transactions this perspective focuses on complexes of radioactive metal ions applied in multimodal radio- and optical imaging. the application of metal ions in radioimaging techniques such as positron emission tomography (pet) and single photon emission computed tomography (spect) has advantages over lighter nuclei in terms of half-life, but there are particular issues related to their speciation (particularly leaching from complexes) and with the combination of certain ions with fluorescent systems. the… expand view on pubmed projects.itn.pt save to library create alert cite launch research feed share this paper citationshighly influential citations background citations methods citations view all figures, tables, and topics from this paper 	 table 	 figure 	 table 	 figure 	 figure 	 table 	 figure 	 figure 	 figure 	 table 	 figure 	 table 	 figure 	 table 	 figure 	 figure 	 figure 	 figure 	 figure view all figures & tables 	fluorine- 	fluorine 	positron-emission tomography 	positrons 	silicon 	radiochemistry 	kinetics 	carbon-carbon lyases citations citation type citation type 	all types 	cites results 	cites 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medicine 	 	 save alert research feed ... ... related papers 	abstract 	figures, tables, and topics 	 citations 	 references 	related papers stay connected with semantic scholar sign up about semantic scholar semantic scholar is a free, ai-powered research tool for scientific literature, based at the allen institute for ai. learn more → resources datasetssupp.aiapiopen corpus organization about usresearchpublishing partnersdata partners   faqcontact proudly built by ai with the help of our collaborators terms of service•privacy policy the allen institute for ai by clicking accept or continuing to use the site, you agree to the terms outlined in our privacy policy, terms of service, and dataset license accept & continue untitled primary care practitioner perceptions and attitudes of complementary medicine: a content analysis of free-text responses from a survey of non-metropolitan australian general practitioners jon l. wardle, david w. sibbritt and jon adams australian research centre in complementary and integrative medicine (arccim), faculty of health, university of technology sydney, ultimo, nsw, australia aim: this study examines gp perceptions, attitudes and knowledge of complementary medicine (cm), and to understand contextual factors that influence these perceptions, atti- tudes and knowledge. background: cm use is increasing, and its influence on primary care becoming increasingly significant. although general practitioners (gps) often have central primary care gate-keeper roles within health systems, few studies have looked specifically at gps’ perceptions, attitudes and knowledge of cm. methods: a questionnaire was mailed to all gps registered as practicing in non-metropolitan areas of new south wales. the survey included one free-text qualitative question, where respondents were invited to high- light issues associated with cm in their own words. free-text responses were analyzed qualitatively using thematic analysis. findings: in total, gps responded to the survey (adjusted response rate . %), with ( . %) filling in the free-text question. central themes which emerged were risk as a primary concern; opposition to, resistance to and the inappropriateness of complementary therapies; struggles with complexity and ambivalent tolerance. conclusion: gps in australia have a wide variety of perceptions toward cm. a minority of gps have absolute views on cm, with most gps having numerous caveats and qualifications of individual cm. efficacy is only one aspect of cm critically evaluated by gps when gauging support for individual therapies – risk, alignment with medical principles and an openness to exploring new avenues of treatment where others have failed, all appear to be equally important considerations when gps form their views around cm. key words: primary care; complementary medicine; interprofessional care; general practice; survey received july ; revised september ; accepted september ; first published online february introduction the past few decades have seen a surge in the interest in, and utilization of complementary medicine (cm) by the public (adams et al., ). cm includes a vast range of self-directed and practitioner-led health practices (eg, meditation, yoga, chiropractic, naturopathy) and products (eg, herbal medicine, nutritional supplements and homeopathy) that are not traditionally considered part of conventional care or the medical curriculum (adams et al., ). large-scale population-based survey findings highlight significant use of cm in australia and internationally (harris et al., ; correspondence to: dr j.l. wardle, australian research centre in complementary and integrative medicine (arc- cim), faculty of health, university of technology sydney, - jones st, ultimo, nsw , australia. email: jon. wardle@uts.edu.au primary health care research & development ; : – researchdoi: . /s © cambridge university press https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at mailto:jon.wardle@uts.edu.au mailto:jon.wardle@uts.edu.au http://crossmark.crossref.org/dialog/?doi= . /s &domain=pdf https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core adams et al., ; world health organization, ; reid et al., ). in australia the role of cm in the contemporary health system is of particular and increasing significance, with cm utilization being among the highest in the developed world (bodeker and burford, ; reid et al., ). the estimated numbers of consultations with cm providers in australia are similar to those of con- ventional providers ( . versus . million), with reported out-of-pocket expenditure on cm pro- ducts estimated to be over $ . billion annually (us$ . billion) (xue et al., ). the therapeutic footprint of cm practitioners in australia is also substantial, with cm practitioners outnumbering conventional primary care providers in some areas (wardle et al., ). although general medical practitioners (gps) often have central primary care gate-keeper roles within health systems, relatively few studies have looked at the practice patterns, attitudes and per- ceptions of gps as a specific sample group in relation to cm (wardle et al., a). high use and support of complementary medicine (cm) by gps has been observed in australia (cohen et al., ; pirotta et al., ; janamian et al., ) and internationally (amster et al., ; corbin et al., ; hamilton, ; thomas et al., ; cocconi et al., ; poynton et al., ; ross et al., ; godin et al., ; al shaar et al., ). although these studies appear to show broad support for cm by gps in most nations – with similar factors underlying this support – it is also important to recognize significant differences across country borders. for example, homeopathy appears to be more popular and publicly accepted in european nations and new zealand than in other countries, whereas chiropractic and naturopathy seem more popular and publicly accepted in australia and parts of the united states than in other regions (bodeker and burford, ). exploring the practice patterns, attitudes and perceptions of gps as a specific practitioner group in relation to cm is also particularly important, as studies of italian and korean physicians have indicated there do appear to be differences between groups with reference to cm use, atti- tudes and provision between primary care physi- cians and specialist or academic physicians (cocconi et al., ; kang et al., ). in a country such as australia, where gps as primary care physicians have an official ‘gate-keeper’ capacity to a variety of both medical and non- medical services, the attitudes and perceptions of gps are likely to have particularly significant practice and policy impact. however, while general practice is one branch of medicine where cm has long made an impact (adams and tovey, ; wardle et al., a), this group has not gained as much research atten- tion as specialist medical professions on this topic. data from australian and international studies demonstrate significant levels of interaction – via utilization and referral – between gps and cm practitioners (pirotta et al., ; cohen et al., ; poynton et al., ; widmer et al., ; godin et al., ; stange et al., ; pirotta et al., ; perry et al., ). given these high levels of interaction, the attitudes, perceptions and knowl- edge of primary care physicians toward cm deserve careful consideration. to provide addi- tional insights into the attitudes, perceptions and use of cm by gps practicing in rural and regional areas of australia’s largest state, the free-text open-ended questions relating to attitudes, per- ceptions and knowledge of cm in a survey of all gps practicing in non-metropolitan divisions of general practice in new south wales, australia were analyzed. methods a questionnaire was mailed to all gps regis- tered as practicing in rural and regional general practice divisions of nsw, with a reminder card sent after two months. the questionnaire was adapted for rural and regional use from previous australian surveys of gp attitudes, use and prac- tices of cm (pirotta et al., ; cohen et al., ). the final survey questionnaire contained items and one free-text qualitative question, where respondents were invited to highlight issues asso- ciated with cm in their own words. results from the quantitative parts of the survey have been published elsewhere (wardle et al., c; d; ). this study reports findings from qualitative analysis of the free-text comments. results from free-text responses were tran- scribed and entered into an excel spreadsheet. the text responses to the open-ended question were then analyzed qualitatively using thematic analysis, with initial codes then being used to create primary care practitioner perceptions and attitudes of cm primary health care research & development ; : – https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core higher order categories in a cumulative manner (liamputtong and ezzy, ). analysis was con- ducted by health services researchers in a public health faculty, with backgrounds in nursing, naturo- pathic medicine, sociology and public health. to reduce potential influence of pre-existing attitudes or experiences of cm, the method of researcher trian- gulation was also employed with each member of the research team providing independent analysis of selections of the data and comparing results afterward (patton, ). quotations are used to illustrate the themes generated by this analysis, to demonstrate interpretations made. participant labels were assigned on the order of data entry of the open-ended variable. ethical approval for the study was obtained from the school of population health research ethics committee of the school of population health, university of queensland and the human research ethics committee of the university of newcastle. results a total of questionnaires were returned com- pleted, with questionnaires returned incom- plete as ‘no longer at this address;’ giving an adjusted response rate of . % for the entire survey. a total of ( . %) respondents had filled in the free-text question. the respondent profiles of both the questionnaire as a whole and the free-text question were similar, with no sig- nificant differences in respondent demographics. respondents had an average age between and years and were . % male. over three- quarters of respondents ( . %, n = ) had completed their medical training at an australian university. the respondent profile was broadly representative of the gp community in the study area, apart from a slight over-representation of women (australian medical workforce advisory committee, ). many of those who responded had definite views about cm, which were thematically coded individually with the results listed in table . the central themes which emerged were risk as a pri- mary concern; opposition, resistance and the inappropriateness of complementary therapies; struggles with complexity and ambivalent toler- ance. sub-categories observed within these themes are also listed in table . risk as a primary concern risk was a major theme in many of the open- text responses, with participants often framing their personal attitudes and perceptions toward cm in relation to risk management rather than other factors such as patient preference or efficacy. both direct (eg, drug–herb interaction, adverse events) and indirect risks (eg, delayed diagnosis) were identified by respondents, though indirect risks were generally seen as being more influential in clinical practice. cm practitioner (or product) variability or potential monopolization of care by cm provides was highlighted as a major issue that increased potential risks to patients. for many gps, it was this risk, rather than risk of ineffective therapies, that was of most concern to them as clinicians, as the following quote demonstrates: ‘they all [treatments] work sometimes – it’s just a matter of using them judiciously. i don’t think [cm] is the problem per se, rather table main themes and sub-categories of responses to free-text questions themes category (n) risk as a primary concern monopolization of care, use as an alternative (n = ) cm practitioners exploiting patients (n = ) risky for gps to integrate from medico-legal perspective (n = ) opposition, resistance and the inappropriateness of cm pseudoscientific (n = ) has no evidence base (n = ) cm not conducive to medical practice/principles (n = ) struggles with complexity do not have time to learn more about cm (n = ) do not know enough about cm to comment or prescribe (n = ) cm too broad a generalization (n = ) ambivalent tolerance i have to be tolerant to retain patients (n = ) some cm are useful, other are rubbish (n = ) it is hard to distinguish good and bad cm (n = ) we do not know everything about medicine (n = ) cm = complementary medicine. j.l. wardle, d.w. sibbritt and j. adams primary health care research & development ; : – https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core that practitioners and patients tend to think their pet therapies will fix everything and anything’. (gp ) concerns around the risks associated with the regulatory vacuum that often surround cm pro- ducts and services were raised by many respon- dents, amongst both supporters and detractors of cm. most respondents held that the risks of cm were maximized due to the variability and hetero- geneity in standards, practices and treatments, which in their opinion was related in a large part to this regulatory vacuum. the risks from integrating or utilizing cm were not seen to be limited to patients, but also to the gps themselves. for some gps, resistance to further integration of cm was not necessarily due to their own perceptions on whether integration was appro- priate based on patient risk, but rather perceived as a product of external factors, particularly legislative and regulatory concerns that were risky to gps themselves. as the following response indicates, this could lead to gps resisting referral, even in instances where they would otherwise be supportive: ‘fear of litigation over risks associated with cervical manipulation stop me referring to chiropractors or osteopaths on paper. i do believe they have great success with certain conditions’. (gp ) opposition, resistance and the inappropriateness of complementary therapies some respondents relayed their concerns about cm purely in evidence-based terms, stating that the only issue they had with most cm was that it did not abide by the principles of evidence-based medicine, and as such, was by default not appro- priate for practice or integration into medical practice. the following quote illustrates the atti- tude presented by many respondents: ‘there is only evidence-based medicine and non-evidence-based medicine. if you can show me the evidence for it i would even start using crystal therapy tomorrow’. (gp ) for others, the opposition to cm ran deeper, indicating that even if some cm disciplines were to adopt evidence-based principles of practice, the historical roots of such cm in pseudoscience and unorthodox philosophy should disqualify them from further integration, as demonstrated by the following illustrative quote: ‘homoeopathy is bunk. acupuncture is grossly overrated, and is not popular in china. tcm [traditional chinese medicine] is only used by the poor in china. nutriceu- ticals [sic] is a scam. chiropractic is trying to position itself as more scientific but histori- cally it’s based on pseudoscience’. (gp ) respondent opposition to cm sometimes resulted in refusal to discuss cm with patients. some respondents suggested that discussion of cm in a conventional medical consultation may give cm an undeserved imprimatur. for other gps, their opposition to cm simply meant that cm was a topic to be ‘kept off the table,’ as illu- strated by the following quote: ‘i find if i don’t ask patients about their [cm] they won’t tell me about it. this suits me fine. i don’t want to know what they’re using as it’s all garbage, and they know i’ll just tell them to stop it anyway’. (gp ) for some gps, opposition to cm was absolute and was not solely directed at those that were trained in cm disciplines. even conventionally trained practitioners drew the ire of some of their colleagues if they dabbled in cm provision, as the following quote demonstrates: ‘unfortunately cm practitioners aren’t the only charlatans out here. i know of many doctors who practice questionable therapies and i’m never ceased to be amazed by the rubbish that pharmacists have the gall to put on their shelves. it’s the opium for the masses’. (gp ) some stated opposition appeared to be asso- ciated not with open resistance to cm, but frus- trations among gps that many cm practitioners were free of the accountability and scrutiny that occurred in general practice. it was felt by many participants that cm therapists practiced in a regulatory vacuum (and were therefore able to primary care practitioner perceptions and attitudes of cm primary health care research & development ; : – https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core practice without restrictions on autonomy), and had a patient-base that was more forgiving and less critical of their practice than was observed in gen- eral practice, as evidenced by the following quote: ‘locally, patients expect orthodox medicine for free but pay for quackery and unproven therapy. they don’t question ridiculous claims that are unproven. yet question much of what i and other orthodox medicine offer’. (gp ) struggles with complexity for many gps, cm use among patients was acknowledged as being a practical modern reality, irrespective of whether they personally perceived merit in the individual cm practiced. cm was perceived as being both too prevalent to ignore, but also too large a field to fully embrace or eval- uate. as such, cm use was considered to be a matter for patients and cm practitioners, rather than the respondents themselves: ‘i assume all my patients are using [cm] and pragmatically don’t mind as if they get ben- efit that’s great. however, i’m not interested in learning more as i already have enough trouble keeping up to do date with orthodox medicine’. (gp ) for some gps, the diversity of cm was said to be overwhelming, and in some instances may result in them not using cm, or feeling uneasy about using cm, even in clinical scenarios where they thought it appropriate, as can be observed in the following quote: ‘i know too little to be confident about pre- scribing or recommending something’. (gp ) part of this complexity was the fact that there was little distinction among respondents of medi- cines, therapies and practitioners when construct- ing personal definitions of cm. however, many gps did note the fraught nature of referring to cm as a homogenous entity: ‘some [cm] are good, some are not. there’s too much variability to term everything under the one moniker’. (gp ) some respondents highlighted that the com- plexities of cm not only affected their perception of individual cm therapies, but also changed their support for a specific cm in differing contexts, where even cm that was generally poorly per- ceived by gps could be deemed appropriate in specific circumstances: ‘my opinions on what is effective in cm are hard to generalize into categories. i find some herbal remedies effective, many are rubbish. likewise i disagree with the general principles of homeopathy but have recommended rescue remedy before. i believe increased commu- nication between practitioners of cm and gps should be encouraged. it seems slow-going’. (gp ) other gps were concerned about the practical implications of such broad cm categorization. many explained the inclusion of well-accepted or perceivably feasible cm with fringe modalities as potentially dangerous, and as a way of giving some cm undeserved legitimacy. this interpretation is demonstrated in the gp quote below: ‘involving all “alternative medicine” under one umbrella such as [cm] is an attempt to give some sham modalities such as homeop- athy credibility by attempting comparison to massage/meditation etc’. (gp ) ambivalent tolerance few gps expressed complete support for inclusion, or further integration of cm. many gps did offer supportive statements, though these were often couched with caveats or caution. as such, many respondents exhibited a form of ambivalent – sometimes belligerent – tolerance to cm use, whereby the validity of cm use was still questioned, but respondents adopted a more pragmatic view of cm, one which was neither wholly positive nor negative. pragmatism (influ- enced by patient beliefs), rather than explicit support for cm often engendered a tolerant or open attitude toward cm for many gps, as the following quote illustrates: ‘my community is very alternative. it is important to be open and not judgmental to ensure compliance and openness in patients. j.l. wardle, d.w. sibbritt and j. adams primary health care research & development ; : – https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core they will choose the [cm] practitioner over me if there was any hint of judgment or hostility’. (gp ) in some instances some gps rejected the notion that some aspects of cm were in fact ‘alternative’ or ‘complementary’ at all, but a part of medicine and wanted these differentiated from other cm modalities and practices that they deemed more fringe or unorthodox. nutritional medicine was often an example given, as indicated in the quote below: ‘nutritional medicine is part of proper medi- cine, not complementary. some [cm] thera- pists go “too far”, even if they do have useful skills. there needs to be adequate regulation as there is a lot of difference between prac- titioners and groups’. (gp ) other practitioners relayed the potential for cm to be used as placebo in practuce, particularly in the case of ‘heart-sink’ patients who were unable to be helped by more conventional treatments. as the following quote demonstrates, in this sense they often supported cm use in specific circum- stances, even when they had less positive views about cm more generally: ‘[cm] can be useful to generate a placebo response that the gp cannot ethically pre- scribe – e.g. often useful for anxiety/depres- sion of mild variety. but some of the guff that gets referred back “the naturopath wants you to test/treat my yeast infection” etc. are both aggravating and entertaining’. (gp ) discussion this study provides interesting contextualization of previous descriptive survey findings around medical practitioner utilization and integration of cm practices and offers new insights to comple- ment other work regarding gps’ perceptions of cm and the interface with primary health care. such work has focused largely on quantitative reporting of figures support for, referral to and practice of individual cms (wardle et al., b; c; d; ). findings from this study suggest that there are few default positions of gps relating to cm. gp perceptions toward cm appear to be accompanied by a number of caveats and qualifying statements, and there is significant diversity of view among gps on most issues relating to cm. the only group of gps in this study which appeared to hold definitive views on cm was the minority of gps who ideologically opposed cm on all levels, who suggested cm was pseudoscientific and incompatible with medical practice. gps who supported cm, or gps who stated they could support it in specific contexts, usually only did so conditionally (eg, using it as a benign placebo, rather than being convinced of its effectiveness). for most respondents their atti- tudes and perceptions of cm in specific circum- stances was framed in a discourse of risk, with risk minimization being seen as more important than maximizing benefits of cm use, possibly due to an overarching skepticism of cm efficacy. efficacy seems to be only one aspect of cm critically eval- uated by gps when gauging their support for individual cm therapies – risk, alignment with medical principles and openness to exploring new avenues of therapies where others have failed, all appear to be equally important considerations. however, most contemporary commentary around the issues surrounding cm and primary practice appears to focus on whether cm is effec- tive enough to integrate into medical practice (ernst, ). findings from this study suggest that more nuanced discussion relating to the policy and practice interface between cm and primary care is necessary to ensure it adequately reflects the issues experienced at the coalface of primary care practice. the findings from this study seem broadly con- sistent with other studies of australian gps, which show generally high levels of support for cm, yet also show a significant minority of gps har- boring negative attitudes or heightened skepticism toward cm (easthope et al., ; hall and giles- corti, ; cohen et al., ). the prominence of risk as a factor in attitudes and perceptions of cm in practice in our study is also supported by ana- lysis of australian biomedical journal content on cm, which showed that most cm content pub- lished in those journals was framed under a dis- course of risk (lewis, ). our work adds clarity and context to these previous studies, by offering insights into the factors that underpin varying primary care practitioner perceptions and attitudes of cm primary health care research & development ; : – https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core levels of support for cm. the qualifications and caveats around issues such as efficacy, for example, the support for cm use by skeptical gps in ‘heart- sink’ patients where other options have failed, or that efficacy may not be the primary concern in relation to cm, also mirrors earlier international qualitative work of cm in general practice, which uncovers a similarly nuanced approach to cm integration (adams, ; brien et al., ; jarvis et al., ). just as there may be no such thing as a ‘typical’ gp, these findings would also suggest that there appears to be no such thing a ‘typical’ gp view of cm. these findings, and the reasons that underlie such differing views, suggest that infor- mation tools and strategies to encourage gp discussion around cm may need to be tailored to a wide variety of views, rather than assuming a ‘one-size fits all’ strategy. this would necessitate a variety of communication and dissemination strate- gies for gp cm education, rather than the devel- opment of resources aimed at a single gp market. such development should also account for the significant heterogeneity of cm. although often defined as a discrete and homogenous group, there is significant heterogeneity in cm approaches, which according to participants in our study included therapies identified as ‘fringe’ or ‘pseudoscientific’ as well as therapies and practices that are considered relatively mainstream in australia (eg, chiropractic is covered by the australian public health insurer medicare upon referral by a gp). there may also be significant regional differences in cm utilization and prevalence that influence gp perceptions. however, relatively few respondents in our study acknowl- edged this heterogeneity, often discussing cm as a homogenous entity. non-disclosure of cm use in general practice was identified as a significant issue in our study, which may pose potential direct and indirect risks to patient care (wardle and adams, ). an international review of cm disclosure to conven- tional medical practitioners found that, although risks of non-disclosure are known to be significant, patients are generally hesitant to disclose cm use to medical practitioners, even when prompted, and medical practitioners routinely do not initiate dis- cussion around cm use in their patients (robinson and mcgrail, ). our study suggests simply highlighting well-known risks of non-disclosure to those gps opposing cm appears not to encourage discussion of cm use with patients, even when those gps may acknowledge the importance of understanding cm use to ensure optimal patient care, and as such offers insights into why addres- sing cm non-disclosure between gps and patients remains difficult. our study suggests cm use by patients may be perceived by some gps to be an issue best ignored due to it being ‘too complex’ or not being as important as other general practice issues. this suggests that not only does cm information for gps need to be tailored for a wide variety of views, but it also needs to be presented in an accessible and clinician-friendly manner. development of tailored and flexible cm information and clinical tools may assist gps to better navigate the interface between cm and general practice, but current tools do not appear to be fulfilling this role. additionally, highlighting the ways in which encouraging cm discussion can be important in improving patient care beyond reducing direct risks (eg, using cm discussion to establish trust), may also help to reduce the rate of non-disclosure of cm use in general practice. the large and varied study area was chosen to be broadly representative of australian general practice demographics. nevertheless, the location of the gps in this study should be considered when generalizing the study’s results to the broader australian or international general practice popula- tion, or to other medical specialties. the non- metropolitan nature of respondents may impact the findings of this study, given that cm use is observed to be highest in rural and regional areas in australia (wardle et al., ). further research in other settings is warranted, particularly given the continued significance of cm in primary care prac- tice, and the relative paucity of recent studies in this area. other limitations of the study include self- selection which may have resulted in a response bias, due to cm being a controversial issue in general practice, and those with particular strong views may have been more likely to participate. this effect may be particularly pronounced in the free-text response section which required additional respondent effort beyond other ques- tions in the survey (rich et al., ). the response rate is typical for large-scale gp surveys on cm conducted in australia over the past decade, which have reported response rates of between and % (cohen et al., ; pirotta et al., ; j.l. wardle, d.w. sibbritt and j. adams primary health care research & development ; : – https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core janamian et al., ), and compares well with general surveys of australian gps, which routinely have difficulty receiving response rates of over % (bonevski et al., ). while the free-text nature of this survey cannot replicate depth of more-focused qualitative exploration, the broad range of perspectives gathered from this open-ended question nested within a larger quan- titative survey represent an important series of insights which may otherwise have not been exposed. conclusion gps in australia have a wide variety of percep- tions toward cm. only a subset of those gps who oppose cm have absolute views toward the topic, with most gps having numerous caveats and qua- lifications of individual cm. efficacy seems to be only one aspect of cm critically evaluated by gps when they gauge their support for individual therapies – risk, alignment with medical principles, and an openness to exploring new avenues of treatment where others have failed, all appear to be equally important considerations when gps form their views around cm. acknowledgments the authors would like to acknowledge the divi- sions of general practice for their support in recruitment for this study. financial support this work was funded by the national health and medical research council and the university of queensland research excellence foundation. ethical standards ethical approval for the study was obtained from the school of population health research ethics committee of the school of population health, university of queensland (jw ) and the human research ethics committee of the university of newcastle (h ). conflicts of interest none. references adams, j. : the positive gains of integration: a qualitative study of gps’ perceptions of their complementary practice. primary health care research and development , – . adams, j., andrews, g., barnes, j., magin, p. and broom, a. 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and adams, j. d: referrals to chiropractors and osteopaths: a survey of general j.l. wardle, d.w. sibbritt and j. adams primary health care research & development ; : – https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://doi.org/ . �/� / https://doi.org/ . �/� / https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core practitioners in rural and regional new south wales, australia. chiropractic and manual therapies , . wardle, j.l., sibbritt, d.w. and adams, j. : the interface with naturopathy in rural primary health care: a survey of referral practices of general practitioners in rural and regional new south wales, australia. bmc complementary and alternative medicine , . widmer, m., herren, s., donges, a., marian, f. and busato, a. : complementary and conventional medicine in switzerland: comparing characteristics of general practi- tioners. forschende komplementarmedizin , – . world health organization. : who traditional medicine strategy – . geneva: world health organization. xue, c., zhang, a., lin, v., da costa, c. and story, d. : complementary and alternative medicine use in australia: a national population-based survey. journal of alternative and complementary medicine , – . primary care practitioner perceptions and attitudes of cm primary health care research & development ; : – https://www.cambridge.org/core/terms. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms https://doi.org/ . /s https://www.cambridge.org/core 	primary care practitioner perceptions and attitudes of complementary medicine: a content analysis of free-text responses from a survey of non-metropolitan australian general practitioners 	introduction 	methods 	results 	risk as a primary concern 	table main themes and sub-categories of responses to free-text questions 	opposition, resistance and the inappropriateness of complementary therapies 	struggles with complexity 	ambivalent tolerance 	discussion 	conclusion 	acknowledgments 	acknowledgements 	references depression and the psychosis and agitation in dementia. correlation of behaviour with the anatomy of neurodegeneration in the different dementias provides insights of potential use in therapy. t h e penultimate chapter by marson and briggs provides an informative review of competency and its neuropsychologic assessment in dementia, citing their recent studies in this new field research. vo l i c e r’s chapter, perhaps unavoidably, last reviews issues in management arising in the late stages of dementia. few patients die in a persistent vegetative state so that provision of meaningful activities and sensory stimulation is a requirement for most patients. among medical, behavioural and caregiver issues, i found that his discussion of tube feeding very informative. professionals interested in dementia will find something of interest here in their own fields as well as enlightenment in the related disciplines. unlike other annual collections of reviews, this one is well-indexed. i found some irritating redundancy in exposition, suggesting a need for greater use of the red pencil by senior authors and editors. figures are well-reproduced (chapters and ), except that a blow up of medial temporal lobe images in chapter would have been helpful. john r. wher rett toronto, ontario basal ganglia and thalamus in health and movement di s o r d e r s. . edited by k. kultas-ilinsky, i.a. ilinsky. published by kluwer academic/plenum publishers, new york. pages. c$ . approx. this text is notable for the authors selected. there is a “who’s who” of movement disorders beginning with anne young, jack penney and mahlon delong and including the toronto we s t e r n hospital group (including jonathan dostrovsky, william hutchison, karen davis and andres lozano). do not be put off by the dry title. there is vertical integration from basic science to clinical application. for those who wondered how pallidotomy works in parkinson’s disease when the classic model of basal ganglia predicts chorea or excessive movement, the answers are approached in these chapters. there is logical division of the formidable topic into historical perspectives, anatomical and functional org a n i z a t i o n , neurotransmitters, receptors and their role in motor behavior, movement and sleep disorders, plasticity in movement disorders, neuronal activity in movement disorders, mechanisms and efficiency of novel treatment for movement disorders. each section is further divided into chapters that touch upon every aspect of basal ganglia and thalamic circuitry and their implications in movement disorders. the chapter on microcircuits could benefit from more diagrams, the text itself being quite dense. whereas, the chapter on local and efferent neurons has lavish histochemistry panels that add to its comprehension. the editors’ chapter dealing with primate organization and connection of the motor thalamus is well-organized and well-written. the subject matter is key to understanding the organization of the basal ganglia and thalamus. the sections on plasticity in movement disorders and neuronal activity in movement disorders deal with primate and human studies. these findings explain much of the paradox of the classic basal ganglia model. finally, there is a brief transcript of discussions from the meeting on which this work is based. le journal canadien des sciences neurologiques volume , no. – may reference for graduate students and postdocs beginning a research career in this specific area, but feel it is probably too focused and unbalanced to be of general interest to senior scientists and clinicians. ian r.a. mackenzie vancouver, british columbia alzheimer’s disease and related disorders annual . edited by serge gauthier and jeffrey cummings. published by martin dunitz. pages. c$ . approx. what is common to β-pleated sheets and pet therapy or to axial flair and the neuropsychology of the capacity to consent? well, it is all in a day for those specializing in dementia and for the editors of an annual collection of reviews and essays in this field. this is the second annual collection edited by gauthier and cummings (unfortunately, contents of the first annual collection are not listed) and is as eclectic as any deliberation in the field or indeed as in any field in medicine. the untoward deterioration of manifold higher brain functions with aging now has the attention of clinical professionals and researchers from a remarkably wide range of disciplines that reflect the complexity of both the etiology and pathogenesis and management. t h i s management in wide measure needs to consider the social setting of the a ffected individual. early chapters address etiology and pathogenesis and pharmacotherapy of particular interest to neurologists and neuropathologists; three chapters address depression, behavioural manifestations of interest to neuropsychiatrists and psychiatrists, and a final chapter addresses geriatricians and family physicians caring for patients in the later stages of debility. i first read chapter by scheltens on neuroimaging, hoping for clarification of the indications in diagnosis. recent studies of mesial temporal atrophy, regional cortical atrophy and white matter change have given conflicting results that suggest that findings will mainly support what is clinically obvious. although research studies superimposing mri and pet or spect appear to give greater precision in detection of a l z h e i m e r’s disease, guidelines of the american academy of neurology recommend against use of metabolic imaging in daily practice. there is room for considerable skepticism about the value of imaging of conditions where multiple pathologic processes appear to intersect. one of these processes that i suspect enters discussion in the memory clinic i n f r e q u e n t l y, amyloid angiopathy, is thoughtfully reviewed by vi n t e r s . we learn that the amyloid does not form in the vessels of the white matter although leukoencephalopathy is seen in some forms. we also learn that % of patients dying with a l z h e i m e r’s disease will be found to have cerebral hemorrhages. the possibility that effective disease-modifying therapies are in sight is reflected in two chapters. the first by cole provides a detailed discussion of mechanisms of amyloid formation and disposal and the second by peterson reviews “mild cognitive impairment”, the term used to include subjects exhibiting the earliest manifestations of alzheimer’s disease and most likely to benefit from these therapies. this latter syndrome is identified through clinical judgement and the development of a definition suitable for clinical studies will require some ingenuity. one of the editors, gauthier, reviews studies of cholinergic agonists that have been overshadowed by the recent success with cholinesterase inhibitors. it is too early to abandon this approach to symptomatic therapy. the other editor, cummings, contributes to one of three chapters updating well-trod approaches to diagnosis and therapy of https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/ . /s https://www.cambridge.org/core https://www.cambridge.org/core/terms the canadian journal of neurological sciences basal ganglia and thalamus in health and movement disorders is written with a uniformly high quality. it is readable, current and the work presented is of a high standard. although proceedings of consensus meetings and gatherings of “experts” have earned a dubious reputation among practising clinicians, meetings such as this international workshop offer a rare opportunity for leading lights in a field to share their current research, to form alliances across borders and to stimulate new arenas of thought. in this respect, these proceedings offer the practising neurologist, neurosurgeon and neurophysiologist a glimpse at the state of the basal ganglia and demonstration of how far our understanding has evolved over the past years as a result of clinical imperatives. j. miyasaki toronto, ontario neurology and medicine. . editored rac hughes, gd perkin. published by bmj books. pages. c$ . approx. this volume contains a collection of essays which have appeared in the journal of neurology, neurosurgery and psychiatry on a variety of aspects of medical neurology. the contributors are an outstanding group of experts in the field and include p.k. thomas on diabetes in the nervous system, michael aminoff on chorea and dystonia and patricia moore on the neurology of vasculitides. there are chapters on the neurology of the respiratory, renal, hepatic and dermatological systems. the contributors are international and include experts from the united kingdom, the united states and from australia. it is aptly stated in the foreword that it is not intended to be encyclopaedic but the volume is easy to read, and as a quick reference for the neurologist who needs to refresh his memory on the various aspects of medical neurology, it is reasonable value. there are areas which one might have expected to have been covered in such a volume, notably metabolic encephalopathies. however, this useful volume thoughtfully covers the chosen selected topics. it was published in so parts of it are somewhat out of date, such as the chapter on stroke but there are still good general principles to be found in the volume. this would be a useful addition to the shelves of the busy internist or the neurological consultant. professor g.c. ebers oxford, england handbook of multiple sclerosis. third edition. . edited by stuart d. cook. published by marcel dekker, inc. pages. c$ . approx. this third edition of this text expands upon the recent developments in the understanding and treatment of multiple sclerosis (ms). topic covered include the epidemiology, genetics, the putative pathogenesis, to the clinical presentations and current diagnostic tools. current options for treatment are discussed, ranging from symptomatic approaches to disease modifying agents to ongoing potential therapeutic targets. the book is divided into three main sections that include the etiopathogenesis, the clinical and pathological changes and the therapeutic considerations. the chapters are written by different authors, who are known to be experts in the field of ms. it is well referenced, with a varying depth of coverage of a topic depending on the different authors. overall, the discussions are generally abbreviated and concise. more detailed discussions are found in the basic science chapters discussing the auto-immune hypothesis and animal models. the text does provide a good summary of the epidemiological history and update as to the different diagnostic tools including the mri. the results of the clinical trials in the treatment of relapsing-remitting disease are thoroughly discussed, but the biases of the different authors are readily apparent (such as the interferon dosage controversy), especially in the chapters discussing the newer disease modifying agents. sections on the cognitive impairment and newer mri techniques are notably included in this text. inevitably, other topical highlights (such as the mcdonald criteria for ms) or the more recent evidence and advances in different treatment issues over the past year are not presented, reflecting the rapidly evolving pace of this field. however, future experimental therapies are included at the latter chapters of the book, discussing the rationale and the empirical results from preliminary data thus far. overall, this text is a good up-to-date reference for clinicians, residents and other health care professionals, who are interested or involved in the medical management of patients with ms. it is well written, concise, with good references. the text includes black and white photomicrographs and other graphics including tables, graphs and illustrations that are well laid out. there is a tendency to have some repetition of topics as the different chapters are written by different authors discussing overlapping areas, but this does not deter from the overall quality and usefulness of this text. liesly lee toronto, ontario management of dementia. . edited by simon lovestone, serge gauthier. published by martin dunitz. pages. c$ . approx. this is an excellent pocket reference for those who wish to treat alzheimer’s disease. lovestone and gauthier are leading authorities in the field, one a psychiatrist, the other a neurologist, and both have had biochemistry background which is a good credential for expertise with pharmacological agents. the management of alzheimer’s disease has become an important issue not only for psychiatrists and neurologists, but geriatricians, general practitioners, and general internists because the disease is so prevalent and now we have fairly effective therapies. management, of course, includes not only treatment but also diagnosis and differential diagnosis, and this little book deals with these issues in a compact yet comprehensive manner. behavioural and sleep disturbance in psychiatric symptoms in a l z h e i m e r’s disease are given specific treatment. biomarkers, genetic testing, and treatment with cholinesterase inhibitors and disease modification agents are well covered. there is also a chapter on long-term care for the patient with dementia and at the end a special supplementary chapter on assessment scales including mmse, mds, adas-cog, clock drawing, behav-ad, severe impairment battery (sib), npi, cornell scale for depression, iddd, the bristol adl, the gds, fa s t, cdr, the burden interview, and finally an appendix of screening, assessment and management algorithms. the book is well-indexed, has ample references, and recommended reading lists. https://doi.org/ . /s downloaded from https://www.cambridge.org/core. carnegie mellon university, on apr at : : , subject to the cambridge core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/ . /s https://www.cambridge.org/core https://www.cambridge.org/core/terms microsoft word - - - melvin dnp final.docx southern california csu dnp consortium california state university, fullerton california state university, long beach california state university, los angeles using comfort menu to impact pain experience a doctoral project submitted in partial fulfillment of the requirements for the degree of doctor of nursing practice by chona melvin doctoral project committee approval: ahlam jadalla, phd, rn, team leader joy r goebel, phd, rn, fpcn team member may ii copyright chona melvin iii abstract a quality improvement (qi) project of a comfort menu of nonpharmacological interventions (npis) was implemented at a spine surgical unit. the purpose of this qi project was to improve patients’ pain experience as measured by pain indicators and length of stay (los) in postsurgical spine patients through the development, implementation, and evaluation of a comfort menu of npis. the comfort menu consisted of npis (acupuncture, pet therapy, hot/cold therapy, virtual reality, music therapy, and reiki/meditation) that are available in the spine surgical unit. baseline data came from patients who did not utilize npis and postimplementation data came from patients who utilized npis. post-comfort-menu implementation showed that the most frequently used npi was hot/cold therapy ( out of patients; . %). the aggregate mean numerical rating scale (nrs) pain level decreased from out of (baseline sample) to out of (postimplementation sample), which was a percent change decrease of . %. the aggregate mean net morphine equivalent daily dose (meddn) decreased from . mg/day (baseline sample) to . mg/day (postimplementation sample), which was a percent change decrease of . %. the hospital consumer assessment of healthcare providers and systems (hcahps) pain satisfaction score increased from . % (baseline sample) to % (postimplementation sample), which was a percent change increase of . %. finally, the los decreased from . days (baseline sample) to . days (postimplementation sample), which was a percent change decrease of iv . %. the implementation of the comfort menu not only improved spinal surgery patients’ pain experience, it also conformed to the joint commission’s revised pain management requirements. by providing patients tools to reduce their pain and by including them in choosing the type of nonpharmacological pain management treatments, patients may feel more empowered to utilize these npis to reduce their pain beyond their hospital stay. v table of contents abstract ................................................................................................................... iii list of tables ......................................................................................................... viii list of figures ....................................................................................................... ix acknowledgments ............................................................................................. x background ........................................................................................................... problem statement ................................................................................................ local context ........................................................................................................ purpose statement................................................................................................. conceptual framework ......................................................................................... lewin’s change theory ................................................................................. model for improvement with a pdsa cycle ................................................ review of the literature ............................................................................... search strategies ................................................................................................... managing pain in postsurgical spine patients ...................................................... use of npis to manage postsurgical spine pain .................................................. acupuncture ................................................................................................... mind-body therapy ...................................................................................... music therapy ............................................................................................... hot/cold therapy .......................................................................................... animal-based/pet therapy ............................................................................ virtual reality ................................................................................................ comfort menu of npis ......................................................................................... methods .................................................................................................................... design ................................................................................................................... preliminary work ................................................................................................. setting ................................................................................................................... participants............................................................................................................ ethical issues ........................................................................................................ procedures ............................................................................................................. vi planning ......................................................................................................... preimplementation ......................................................................................... implementation .............................................................................................. postimplementation ....................................................................................... measurement tools ................................................................................................ nrs pain level ............................................................................................. medd ............................................................................................................ hospital los ................................................................................................. hcahps pain satisfaction score.................................................................. data analysis ........................................................................................................ nrs pain level ............................................................................................. meddn .......................................................................................................... los and hcahps pain satisfaction score .................................................. results: project manuscript ........................................................................ discussion ................................................................................................................ overview ............................................................................................................... limitations ............................................................................................................ conclusion ............................................................................................................ references .............................................................................................................. appendix a: plan-do-study-act model ................................................... appendix b: table of evidence.................................................................... appendix c: csulb irb approval ................................................................. appendix d: csmc irb approval ................................................................... appendix e: comfort menu for patients ............................................... appendix f: comfort menu guide for nursing staff ..................... appendix g: csmc clearance to disseminate and publish .......... appendix h: data extraction tool .......................................................... appendix i: primary outcome extraction tool .............................. appendix j: morphine equivalent daily dose calculation ...... appendix k: postimplementation survey questionnaires for nursing staff ......................................................................................................... vii appendix l: equianalgesic chart ............................................................. appendix m: manuscript submitted to the joint commission journal on quality and patient safety ........................................................................................ viii list of tables table page . sample demographics ......................................................................................... . baseline and postimplementation outcome scores............................................. ix list of figures figure page . the model for improvement................................................................................ . percent change of outcomes from baseline to postimplementation ................... x acknowledgments this study would not have been possible without dr. ahlam jadalla’s guidance, assistance, and direction. her unending support, encouragement, and mentorship have been invaluable in this study. i feel so blessed and will forever be grateful for having her as my chair and mentor. i would also like to thank dr. joy goebel for her time, guidance, insight, and expertise she poured into this project. i am also grateful for dr. margaret brady and dr. penny weissmuller for their support throughout my doctorate program. i extend my gratitude to cedars-sinai medical center (csmc) collaborators, dr. bernice coleman, dr. charles louy and north west nursing staff for their support and collaboration. special thanks should be given to my fiancé, family and friends who have helped me in so many ways. i thank them for their kind words and encouragement. lastly, this project is dedicated to my father, benjamin porlaje, whom in the midst of his battle with cancer, has taught me to be resilient and to push through life’s challenges. background problem statement pain management following spinal surgery remains challenging (montgomery & mcnamara, ). given the complexities of these surgeries, it is common for a patient to have a considerable degree of postoperative pain. therefore, having a full spectrum of pain management options is imperative to improve patients’ pain and other pain-related patient outcomes (montgomery & mcnamara, ). the availability of pain management options is especially crucial in patients recovering from surgical procedures to address long-standing chronic back pain. patients with chronic pain require more complex approaches than traditional pain management to relieve their suffering. pharmacological interventions are often the first line of treatment following spinal surgery. however, these approaches may have both short- and long-term side effects (dunn, durieux, & nemergut, ). some studies suggest that the use of nonpharmacological interventions (npis), such as mind-body treatment, acupuncture, music therapy, and animal-assisted therapy are effective adjuvants for postsurgical pain (blödt pach, roll, & witt, ; harper et al., ; korhan et al., ; vas et al., ). individually, there is empiric evidence supporting the efficacy of these npis. however, healthcare workers’ underutilization of these alternatives compared to pharmacological interventions may be due to a lack of awareness of npis availability or usability to treat pain. local context stakeholders of a -bed surgical spine unit in a large california magnet hospital noted that patients have a prolonged hospital length of stay (los) when compared to patients from other surgical units. baseline data of patients from the last quarter of the year showed that the average los was . days, which was beyond the goal of . days. one of the major barriers for discharge was pain. also, the sample data showed a high aggregate mean patients’ numerical rating scale (nrs) pain level of out of . additionally, the aggregate mean net morphine equivalent daily dose (meddn) in a -hour period was . mg/day. lastly, the hospital consumer assessment of healthcare providers and systems (hcahps) pain satisfaction score was . %, which was below the goal of . %, signaling a need for an improved pain management approach. one way to improve pain management is to facilitate utilization of npis currently available on the surgical spine unit. although there may have been multiple contributing factors for the underutilization of npis, nurse awareness and commitment to these approaches were possibly lacking. educating the nursing staff and optimizing the process of accessing these approaches could help to improve patients’ pain management experiences. purpose statement the purpose of this doctoral project was to improve patients’ pain experience as measured by pain indicators and los in postsurgical spine patients through the development, implementation, and evaluation of a comfort menu of npis. conceptual framework a conceptual framework provides a guide for developing a project or study (polit & beck, ). in this project, lewin’s change theory and model for improvement with the plan-do-study-act (pdsa) cycle facilitated the implementation of the comfort menu quality improvement (qi) project. lewin's change theory the author considered lewin’s change theory in the implementation of a comfort menu. in the s, kurt lewin pioneered the theoretical change model in an organizational setting, which includes a three-stage process known as unfreeze, change, and refreeze (mclean & hudson, ). lewin’s change theory considers three concepts: equilibrium, driving forces, and restraining forces. equilibrium describes the current state of practice or status quo, while driving forces are the factors that promote change and restraining forces are those that hinder change (kaminski, ). the first stage of lewin’s change theory is unfreezing. this stage “examines the motivation to take on the change” (mclean & hudson, , p. ). the unfreezing stage requires breaking down the equilibrium or status quo by strengthening the driving forces and decreasing the restraining forces (sutherland, ). in the author’s institution, the status quo was characterized with using the standard approach to pain management, primarily focused on pharmacological interventions. it was also characterized by the low- quality indicators including hcahps pain satisfaction scores and the increase in los for postsurgical spine patients. these quality indicators serve as driving forces to motivate the nursing staff to change their current practice. restraining forces include nursing staff’s resistance to change due to assumptions of more work for them, the lack of npis, and the timing of npi treatments in relation to other treatments such as physical therapy. to mitigate these restraining forces, the author included the stakeholders and frontline nursing staff in the planning and implementation phases of this qi project. as kaminski ( ) stated, “the more transparent and inclusive the process is, the more readily people move from the unfreezing state” (p. ). change is the second stage of lewin's change theory and includes identifying “what needs to change and make those changes” (mclean & hudson, , p. ). in this stage, the author implemented the comfort menu developed with input from the stakeholders, including the surgical unit’s nurse manager, inpatient pain services, the spirituality department, the volunteer services, the acupuncturist, the virtual medicine department, and the nursing staff on the unit. factors that were considered for the implementation of this qi project included the availability of npis, reliability of implementation, the education needs of the nursing staff, potential effects on nursing workflow, and the overall organizational culture. the last stage in the change theory is refreezing, wherein the proposed change becomes “permanent and sustainable” (mclean & hudson, , p. ). sutherland ( ) stated that teams require support until they are confident in using the proposed change. the process of change does not end after the implementation of the comfort menu. in this stage, it is important to share the qi project’s positive outcomes and to provide ongoing support to the nursing staff (e.g., monthly meetings with the nursing staff, continuing to negotiate with nursing staff to encourage patients to consider using npis in addition to pain medication, and stocking needed supplies to name a few). model for improvement with a pdsa cycle the implementation of the comfort menu qi project followed the pdsa cycle model for improvement. edward deming’s pdsa model is a widely used process to aid healthcare teams in improving the quality of care, particularly for “making healthcare safer, more efficient, patient-centered, timely, effective and equitable” (donnelly & kirk, , p. ). in , langley, nolan, and nolan added three basic questions to the pdsa cycle that is now known as the model for improvement (moen, ). the institute for healthcare improvement (ihi) utilizes the model for improvement with pdsa cycle (figure ) as a framework and guide for accelerating improvement (ihi, n.d.). the first step in implementing a proposed change is to address three questions: ) what are we trying to accomplish? ) how will we know that a change resulted in an improvement? and ) what change can we make that will result in improvement? (ihi, n.d.). the first question involves setting goals. the purpose of this qi project was to improve patients’ postsurgical spine pain experience. the second question involved establishing quantitative measures to assess if the implementation of the qi project would lead to the improvement of pain experience through pain indicators. the indicators for a patient’s pain included improvements in pain scores, a decrease in opioid use by calculating the meddn, and improvement in the hcahps score. an additional outcome included shorter hospital los. lastly, the third question involved selecting a specific change. for this project, the change was the implementation of a comfort menu of npis to improve pain for spinal surgery patients. the second step to implementing the model for improvement is to test the selected change in a chosen work setting by utilizing the pdsa cycle process (appendix a). pdsa consists of four steps: plan the change (plan), implement the change (do), study the outcomes of the change (study), and refine the change based on the outcomes (act; ihi, n.d.). figure . the model for improvement (associates in process improvement, n.d.) pdsa-plan. this initial step includes the identification of the statement of purpose and formation of an outcome prediction. the author reviewed the current standards of care, collected baseline pain indicators (numerical pain scores, meddn, hcahps pain satisfaction scores), los, and current rate of npi utilization. additionally, the author provided the nursing staff with education regarding the use of the proposed comfort menu. lastly, a team of champion nurses from the unit was formed and support from stakeholders and different departments who currently provide npis was obtained. pdsa-do. implementation of the comfort menu occurred during this stage. specifically, bedside nurses educated patients at the beginning and intermittently during their shift regarding the availability of a comfort menu for pain management. to enhance ease of use and accessibility, a laminated copy of the comfort menu was made available in every patient’s room and nursing station. also, the nursing staff documented the chosen interventions and postintervention pain scores through the hospital’s electronic medical record (emr) as part of the nursing standard of care. lastly, data collection was started in this stage. pdsa-study. pain indicators (nrs pain level, meddn, and hcahps pain satisfaction scores) and los, both at baseline and at post-comfort-menu implementation, were compared on this stage. additionally, the author documented thorough descriptions of how the patients and nursing staff used the comfort menu. pdsa-act. the act phase commenced with planning for future adjustments based on lessons learned from the implementation of the comfort menu. this included determining which parts of the intervention would be pushed forward to the next pdsa cycle, such as spreading the use of the comfort menu to the entire organization. lastly, the author enumerated and discussed the challenges and barriers encountered during the qi project implementation. review of the literature the purpose of this doctoral project was to improve patients’ pain experience as measured by pain indicators and length of stay in postsurgical spine patients through the development, implementation, and evaluation of a comfort menu of npis. to achieve this purpose, the author performed a comprehensive literature review. searches involved current practices in managing postsurgical spine pain, the use of npis to manage postsurgical spine pain, and the bundling of npis in a comfort menu form. the review is divided into the following sections: (a) managing pain in postsurgical spine patients, (b) use of npis to manage postsurgical spine pain, and (c) comfort menu of npis. the six types of npis were further subcategorized into: (a) acupuncture; (b) mind-body treatment, specifically reiki and meditation; (c) music therapy; (d) hot/cold therapy; (e) pet therapy; and (f) virtual reality (vr) medicine. literature that were reviewed and included in the paper were summarized on the table of evidence (appendix b). search strategies the following databases were reviewed for high-quality evidence to support the aims of the qi project: pubmed, cumulative index to nursing and allied health literature (cinahl), science direct, one search, google scholar, and cochrane library. the key medical subject headings (mesh) terms included: “acute postoperative back pain,” “acute back pain,” “spine surgery,” “post-surgical spine,” “post-operative spine pain,” “pain management,” “non-pharmacological intervention,” “complementary alternative treatment,” “complementary and alternative medicine,” and “comfort menu.” limits on the search included peer-reviewed journals and studies published between and . lastly, reviews were limited to adult populations and english language only. another literature review search was conducted on the six types of npis (acupuncture; mind-body treatment, specifically reiki and meditation; music therapy; hot/cold therapy; pet therapy; and vr medicine) used in this project. key mesh terms included: “complementary treatment,” “acupuncture,” “acupuncture therapy,” “mindfulness,” “mindfulness breathing,” “reiki,” “virtual reality,” “pet therapy,” “animal- assisted therapy,” “virtual medicine,” “heat therapy,” and “cold therapy.” excluded were studies that involved npis other than the six identified above. managing pain in postsurgical spine patients acute postsurgical pain is a common experience following spine surgery (montgomery & mcnamara, ). this procedure is identified in the top six of surgical procedures that cause a high level of pain (bajwa & haldar, ; gerbershagen et al., ). often, pain results from the manipulation of structures during surgery, which stimulates pain receptors (bajwa & haldar, ). however, other than the physical causes of pain, there is also accompanying psychological pain that may be difficult to manage (puvanesarajah et al., ). inadequate treatment of postsurgical pain contributes to undesirable patient outcomes, including, but not limited to, the development of chronic pain, increased length of stay, and disability (bajwa & haldar, ). however, there is currently no gold standard for post spine surgery pain management (ali et al., ; bajwa & haldar, ; wainwright, immins, & middleton, ). treatment varies from parenteral or oral modalities to neuraxial techniques. given this range of potential strategies, clinicians are encouraged to investigate evidenced-based treatments that are both comprehensive and multimodal in approach (bajwa & haldar, ; wainwright et al., ). use of npis to manage postsurgical spine pain the challenges surrounding the management of postsurgical pain calls for utilizing other approaches that are effective, multimodal, and safe. npis provide a promising approach that can serve as an adjunctive treatment to standard pain- management techniques. different organizations have recommended the use of npis. the american college of physicians (acp) currently recommends the use of npis such as superficial heat and acupuncture to treat acute or subacute low back pain (qaseem et al., ). also, in , the joint commission (tjc) revised their pain assessment and management standards to require hospitals to provide nonpharmacologic treatment modalities (tjc, ). the commissioners of tjc reasoned that nonpharmacologic treatments might conserve opioid use and help patients achieve a better resolution to their pain (tjc, ). however, studies show that clinicians are often unaware of npis’ efficacy at alleviating acute pain (rhee et al., ; tick et al., ). this is especially true for the psychological component of pain, which is less understood and more difficult to manage. clinicians need to look beyond conventional treatments and start embracing multimodal approaches, such as integrating npis with traditional therapy. this section reviews the relevant literature of six types of npis and describes their effectiveness in managing postsurgical spine pain. acupuncture acupuncture is the art of stimulating certain points of the body (generally with a needle) to treat a patient’s health condition (tick et al., ; walker, ). acupuncture’s mechanism of action suggests that low-frequency acupuncture releases endorphins, encephalins, and endomorphins that activate the mu and delta opioid receptors that regulate pain perception (lin & chen, ; walker, ). most importantly, acupuncture fosters self-care, as patients need to engage and commit to continuous treatment for it to be effective (tick et al., ). given the side effects that come with pharmacological pain treatments, the shift to alternative treatments that do not rely only on pharmacological interventions will continue to become an important part of a patient’s treatment (qaseem et al., ; tick et al., ; walker, ). in systematic reviews, meta-analyses, and randomized controlled trials of acupuncture as an adjuvant to conventional treatment, it was effective in reducing acute low back pain (vas et al., ), postsurgical spine pain (cho et al., ; chung et al., ), and pain from different types of surgery (wu et al., ). there are different forms of acupuncture, of which the most common includes acupoint electrical stimulation (cho et al., ; vas et al., ; wu et al., ). two studies showed noticeable reduction of postsurgical pain and opioid consumption following acupuncture treatment (chung et al., ; wu et al., ). it is important to note that the added benefits of acupuncture in positively addressing psychological factors associated with pain (e.g., anxiety, fear, and depression) was evident in two studies (chung et al., ; vas et al., ). these findings showed that acupuncture, when used as an adjuvant to conventional treatment, provided a safe, practical, and cost-effective approach to mitigating acute or chronic spine pain. mind-body therapy while acupuncture involves the application of a foreign element to physically impact the body, mind-body therapy addresses the psychological concerns of daily living postsurgery, such as fear of physical activity. another psychological component of pain is pain catastrophizing, wherein a person tends to magnify the anticipation of pain (quartana, campbell, & edwards, ). these psychological components of pain require treatment beyond conventional measures (garland et al., ). psychological factors can exacerbate pain through the pain perception pathway in the cortico-limbic brain, thus providing a logical basis for the possible effectiveness of mind-body therapies (e.g., mindfulness, reiki, guided imagery, and relaxation; garland et al., ; rhee et al., ). like acupuncture, mind-body therapies encourage self-care by requiring an ongoing commitment to the approach to foster efficacy. garland et al. ( ) showed that certain mind-body therapies are effective in providing a significant decline of acute pain and other psychologic factors (e.g., anxiety, stress, disability). on the other hand, two systematic reviews showed variable results in pain intensity, psychological measures, and opioid intake (nelson et al., ; nicholls et al., ). nicholls et al. ( ) stated that five of the six studies were performed by inexperienced therapists, which could affect the validity of the study, and explain the variabilities seen in the results. given the diversity of mind-body treatments as well as the different measures of pain, the evidence supporting mind-body therapies is limited, especially for acute postsurgical spine pain. although evidence is weak to moderate, most studies showed a significant decrease in acute pain and other psychological factors in hospital settings, suggesting that mind-body therapies may be a safe adjunct for postsurgical spine pain. music therapy music therapy, while a form of mind-body therapy, is unique because of its outside stimulus that affects the limbic part of the brain. this cortico-limbic process provides a logical effectiveness in changing patient perception of pain (lingafelt, ; rhee et al., ). the consortium pain task force is an institutional member organization consisting of academic medical centers and health systems (tick et al., ). in line with the consortium’s mission to enhance evidence-based integrative medicine, they recommended music therapy as a nonpharmacologic therapy for acute and chronic pain (tick et al., ). in a meta-analysis examining the efficacy of music therapy in managing pain, a considerable reduction of chronic pain and distress was noticeable (lee, ; tick et al., ). however, the decrease in pharmacological consumption was insignificant (lee, ; tick et al., ). systematic reviews and meta-analysis suggested that music therapy mitigates acute pain (both surgical and nonsurgical) when added to usual care regimens in hospitalized patients (cole & lobiondo-wood, ; comeaux & steele- moses, ; hole, hirsch, ball, & meads, ). however, music therapy’s effect on anxiety varies across these studies (cole & lobiondo-wood, ; comeaux & steele- moses, ). even though the type of music varies among the studies reviewed, no difference in the subgroup analysis examining the influence of music on anxiety or pain exists (hole et al., ). hole et al.’s ( ) systematic review and meta-analysis supports the universality of music and shows that music in general, and not a specific type, serves as an important tool when it comes to pain management. two studies assessed the effectiveness of music therapy in decreasing pain in patients who underwent spine and thoracic surgery (liu & petrini, ; mondanaro et al., ). music effectively decreased pain in these studies; however, the effects on anxiety varied, possibly related to the different outcome measures, the hospital anxiety and depression scale and the state-trait anxiety inventory. however, regardless of the type of music, patient anxiety was lower when music therapy occurred more frequently (liu & petrini, ). these studies suggest the potential of music therapy to act as an effective adjuvant in managing postsurgical spine pain, keeping in mind that frequency of treatment may impact its effectiveness. hot/cold therapy the use of hot or cold therapy is generally safe and effective when used to treat localized inflammation associated with pain. superficial heat is currently the first recommendation by the acp to treat acute and subacute low back pain (qaseem et al., ). heat physiologically affects the extensibility of collagen, relieves spasms, and can help to relieve joint stiffness (lewis et al., ). on the other hand, local application of cold therapy decreases the body’s temperature and reduces inflammation through vasoconstriction (quinlan et al., ). recent studies that assessed the effectiveness of hot or cold therapy showed a mild to a marginal decrease of pain scores for different types of pain (aciksoz, akyuz, & tunay, ; lewis et al., ; quinlan et al., ). on the other hand, hot or cold therapy applied to distal end radius fractures showed a statistically significant reduction in pain (patwardhan, mhatre, & mehta, ). although quinlan et al.’s ( ) randomized controlled trial (rct) showed a considerable decrease of opioid consumption post cold therapy, patients’ perception of pain remained constant in both control and intervention groups. it is possible that patients’ unchanged perception of pain may influence higher pain-score reporting, but given patients reduced opioid consumption, these pain levels remained at tolerable levels (quinlan et al., ). also, it is possible that the effectiveness of hot and cold therapy does not vary due to the type of pain, but, rather, that the effectiveness may be based on the kinds of conventional treatments that are concurrently implemented (e.g., positioning and exercise, to name a few). although further research is necessary, a mild to marginal decrease in pain and a significant reduction of opioid consumption signals that hot/cold therapy is a potential adjunctive treatment for postsurgical spine pain. animal-based/pet therapy animal-based therapy or animal-assisted therapy is defined by the american veterinary medical association (n.d.) as a “goal-directed intervention in which an animal meeting specific criteria is an integral part of the treatment process,” and it “is designed to promote improvement in human physical, social, emotional, or cognitive function” (harper et al., , p. ). there are a myriad of benefits of pet therapy (e.g. an increase in quality of life and well-being for older patients; adding to holistic care for patients receiving chemotherapy; and the reduction of cardiovascular risk) (creagan, bauer, thomley, & borg, ; levine et al., ). there is a scarcity of high-quality studies investigating the efficacy of animal- assisted therapy. however, two studies showed improvements in chronic (marcus et al., ) and acute postoperative pain (harper et al., ). both studies (harper et al., ; marcus et al., ) used canines, which always had an animal handler present. however, only one of the studies used animal-assisted therapy as a direct adjunct to conventional treatment (harper et al., ). both studies showed positive psychological outcomes, such as lower anxiety and stress, as well as improved hospital stay satisfaction (harper et al., ; marcus et al., ). marcus et al.’s ( ) study set in an outpatient pain clinic demonstrated significant improvements in psychological factors of pain (e.g., anxiety, irritability) among patients’ family and staff. this study found that animal-based therapy not only improved patients’ perception of pain, but also found that families and staff who enjoyed petting the dogs similarly reported improvement in emotional distress and feelings of well-being. the frequency of animal-based treatment also affected the impact on patients’ pain, as seen on patient reports of significantly higher pain relief after receiving > minutes compared to those receiving < minutes of animal-assisted therapy (marcus et al., ). the significant effect of animal-based therapy as an adjunctive treatment for acute pain following total joint arthroplasty (harper et al., ) showed a definite potential benefit for postsurgical spine pain. virtual reality virtual reality technology “provides an immersive, multisensory, and three- dimensional ( d) environment that enables users to have modified experiences of reality by creating a sense of ‘presence’” (tashjian et al., , p. ). studies conducted in a burn wound care center showed that because of its immersive properties, vr distracted patients from their pain, thus reducing their pain (li et al., ; tick et al., ). vr’s immersive and distractive properties potentiate its applicability as an adjunctive treatment in managing postsurgical spine pain. distractive properties of vr were visible among patients with acute pain while undergoing dressing changes and variable acute pain in hospital settings (guo, deng, & yang, ; tashjian et al., ). recent studies suggested that vr has a positive pain effect, specifically for patients suffering from an acute type of pain (guo, deng, & yang, ; minyoung et al., ; tashjian et al., ). on the other hand, vr acts as a motivational tool for patients with pain to complete rehabilitation-type activities (minyoung et al., ). in other words, while vr provided a distraction from pain in two studies (guo, deng, & yang, ; tashjian et al., ), it provided a motivational push for patients who are in pain to do an activity that may cause pain rather than to avoid the activity (minyoung et al., ). because of limitations (e.g., seizure, neck instability, motion sickness) and side effects (e.g., nausea) that come with vr therapy (tashjian et al., ), it is important for clinicians to use this type of npi with caution and assess a patient’s condition before utilizing vr. although further research is necessary, current data on vr therapy has shown positive outcomes for acute pain, which indicates that vr can act as an adjunctive treatment for managing postsurgical spine pain. comfort menu of npis a comfort menu provides a patient with multiple options of proven supplementary therapies from which to pick. the concept of having a comfort menu is not a novel one; however, there were no studies available to test its effectiveness on pain outcomes directly. this qi project assessed whether there was an improvement of postsurgical spine pain when nurses provided patients with a comfort menu of available npis. the use of a comfort menu requires that patients, clinicians, and nurses are aware of the available npis on their unit. the nurses’ or clinicians’ attitudes towards npis or complementary therapies may also affect their willingness to offer this therapy; thus, educating them was a part of this qi project. finally, by providing patients tools to reduce their pain and by including them in choosing the type of nonpharmacological pain management treatments, patients may feel more empowered to utilize these npis to reduce their pain beyond their hospital stay. conclusion evidence suggests these npis are potentially effective on their own. however, it is possible that either a lack of awareness or the lack of a structure that facilitates the use of npis by both clinicians and patients may be the reason for their underutilization. most of the npis reviewed do not have a direct impact on postsurgical spine pain, which can be due to limitations set (e.g., < years of study included, limited to adults only). however, the positive pain effects of each npi, especially on acute types of pain, signal a potential effectiveness in managing postsurgical spine pain. it is important to note that npis frequency, dosing, uniformity of measuring tools, ongoing support by staff, and types of conventional treatment concurrently given play a significant role in npi efficacy. overall, the six types of npis reviewed generally showed safe, practical, and cost- effective effects when used to treat acute pain. methods the purpose of this doctoral project was to improve patients’ pain experience as measured by pain indicators and length of stay in postsurgical spine patients through the development, implementation, and evaluation of a comfort menu of npis. this section describes the project’s design, setting, participants, ethical consideration, development and implementation of intervention, measurement tools, data collection, and analysis. design this project used a qi approach to develop, implement, and evaluate a comfort menu of npis for improving postsurgical spine patients’ pain indicators and los. pain indicator outcomes included pain level as measured by the nrs, opioid requirement as measured by net meddn and pain satisfaction score as measured by press ganey’s hcahps. an additional outcome was patients’ hospital los. preliminary work the author completed a preliminary assessment of pain indicators (nrs pain level, meddn, and hcahps pain satisfaction score) at the spine surgical unit using a retrospective chart review of patients who did not utilize any npis from october to december . additionally, the author reviewed the los of the patients during the same period. patients had a mean nrs pain level of out of . the mean meddn in a -hour period was . mg/day; one patient used about mg meddn in a -hour period, which was considered an outlier, thereby that patient’s opioid consumption was removed in calculating the mean meddn. the hcahps pain satisfaction score for the unit was . %, which was below the goal of . %. additionally, the los for postsurgical spine patients was . days, which was beyond the goal of . days. these findings signaled a need to improve the quality of pain management care for postsurgical spine patients. setting the qi project took place on a -bed spine surgical unit at a large california magnet hospital. there are approximately spine surgeons who perform various spine surgeries, including laminectomies, discectomies, and spinal fusions. lastly, nurse to patient ratio in this unit is : . participants a convenience sample of patients admitted to the surgical unit served as the project’s sample. inclusion criteria were years or older and having undergone spine surgery. exclusion criteria included patients who did not undergo spine surgery, had altered mental state diagnosed by the admitting physician (icd- codes r . and f ), were unable to follow instructions for npi use (assessed by the registered nurses using the glasgow coma scale), and refused npis. specific exclusion criteria for virtual reality (vr) use included visual impairment, history of seizure disorder, motion sickness, and active nausea or vomiting. ethical issues institutional review board (irb) approval was sought for this qi project (appendix c). the author requested frontline nurses’ participation, with the caveat that participation was not mandatory. a comfort menu functions as a new tool for utilizing npis that are already in practice and provides minimal risk to nurses and patients. the author gathered nrs, meddn, los and rate of npi use from the electronic medical record (emr). all digital data for this project were deidentified and stored in a password- protected computer. the hospital’s irb determined this project to be nonresearch and, as such, did not require oversight by the irb (appendix d). procedures i. planning  met with the stakeholders to review timeline, procedures, and outcomes.  identified nurses from the spine surgical unit to act as comfort menu champions.  developed comfort menu for patients and nursing staff. o identified and developed content  comfort menu for patients (appendix e) includes brief information and an image of each npi available at the unit:  acupuncture  mind-body therapies (reiki and meditation)  music therapy  hot/cold therapy  animal-based therapy  virtual reality  comfort menu instructional guide for nursing staff (appendix f) includes information about how to order each npi in the emr charting. additionally, departmental information such as office hours and phone numbers were included. o developed initial prototype and piloted with four nurses (not champions). o collected qualitative feedback. o revised prototype based on feedback collected. o presented latest prototype to unit stakeholders and all staff and requested feedback. o finalized menu for patients and nursing staff.  comfort menu for patients (laminated menu placed on a patient’s bedside table or board).  comfort menu for nursing staff (laminated menu located in nursing station). ii. preimplementation  developed educational content for nursing staff sessions. o qi project goals, aims, and timeline. o each npi’s effectiveness based on literature. o inclusion/exclusion criteria of the project. o how to order each npi, phone numbers, and departmental information. o monitor for potential adverse effects or side effects from npi use. o assess and document nrs pain level, opioid use, and npi used as part of standard of care. iii. implementation  conducted -hour educational sessions with nursing staff. the author and pilot team arranged three sessions to accommodate unit schedule.  comfort menu went live on the -bed spine surgical unit mentioned during the unit practice council meeting. o nursing staff explained the comfort menu to the patients every shift or as needed. for patients who used npi as adjuvant treatment, nursing staff:  performed standard of care as required.  assessed and documented nrs pain level.  assessed and documented opioid use.  assessed and documented npi use.  stopped npi use for any adverse effects or events and documented such events. iv. postimplementation  obtained irb approval from california state university, long beach (appendix c), and from the medical center (appendix d). additionally, an institutional clearance to disseminate and publish was obtained from the medical center (appendix g).  obtained list of patients from emr who had spine surgery and received npi treatment from july to september , .  began chart review and data collection using data extraction tool. o data extraction tool (appendix h):  case#  age  gender  type and level of spine surgery  previous spine surgery  baseline medd use, if any o primary outcome extraction tool (appendix i):  postoperative day (pod) when npi used  pod -hour mean nrs pain level  pod -hour medd use (appendix j)  meddn= (baseline medd – -hour medd use)  number of npis used during the entire los  specific npi(s) used during the entire los  collected hcahps pain satisfaction score on the unit (available monthly). specific pain satisfaction hcahps questions: o during this hospital stay, did you have any pain? o during this hospital stay, how often did the hospital staff do everything they could help you with your pain? o during this hospital stay, how often was your pain well controlled?  calculated los of the patients included in the project by counting the hospital stay from admission to the date of discharge.  collected data was deidentified and chronologically numbered and entered in an excel spread sheet in the author’s laptop and was password protected.  collected open-ended survey from the nursing staff (appendix k). measurement tools nrs pain level pain assessment varies depending on different factors such as age, mentation, and sedation level, to name a few. the nrs is an -point scale, where the extreme ends are either no pain or the worst pain imaginable (williamson & hoggart, ). in a review by williamson and hoggart ( ), nrs was found to be more sensitive and more audit- and research-friendly than other pain assessment tools. multiple studies have shown the validity and reliability of nrs in assessing pain (ferreira-valente, pais-ribeiro, & jensen, ; göransson, heilborn, selberg, von scheele, & djärv, ; hjermstad et al., ). at the author’s institution, nrs was the chosen method of assessing pain in the adult surgical spine unit. additionally, assessment of patients’ pain at the author’s institution occurred every hours, before and after an intervention, and as needed. medd medd is a conversion tool that assesses the equianalgesic potency of different opioids (rennick et al., ). the medd is calculated by converting each opioid taken in a -hour period to medd using the equianalgesic chart (appendix l). equianalgesic conversion is a common method of estimating opioid potency and is useful when converting one opioid to another (rennick et al., ). additionally, the centers for disease control and prevention (cdc) uses medd as part of the safe opioid prescribing recommendation in calculating total daily dose (cdc, n.d.). although there is no current universally accepted opioid conversion, clinicians widely use medd, and it is the only opioid consumption calculation used at the author’s institution. hospital los assessing los is now part of patient outcome indicators (brasel, lim, & nirula ). about one third of u.s. healthcare costs consist of inpatient hospital stays (agency for healthcare research and quality [ahrq], n.d.). because of the known healthcare cost of increased hospital stays, hospitals are financially incentivized to decrease patients’ los (ahrq, n.d.). the author calculated los of the patients (baseline and postimplementation group) included in the project by counting the hospital stay from admission to the date of discharge. hcahps pain satisfaction score the hcahps survey is a standardized national survey that is acquired from a patient’s perception of how he or she was cared for during a hospital stay (centers for medicare & medicaid services, n.d.). furthermore, the patient protection and affordable care act of included hcahps measurement in the calculation of value-based incentive payments (centers for medicare & medicaid services, n.d.). these measures incentivized hospitals to enact the required component of hcahps, wherein pain management is one key driver. specific pain control questions were: during this hospital stay, did you have any pain? during this hospital stay, how often did the hospital staff do everything they could to help you with your pain? and lastly, during this hospital stay, how often was your pain well controlled? there were limited studies that assessed the validity and reliability of the hcahps survey. however, a few studies showed that the hcahps survey provides high reliable measurement of patient experiences (dockins, abuzahrieh, & stack ; elliott et al., ). the author’s institution utilizes the hcahps survey and results for the spine surgical unit are used as quality patient outcome indicators. data analysis patients’ demographic data were described with measures of central tendency (e.g., means, standard deviations, and percentages). the author created descriptive tables and graphs to describe the effects of npis on meddn and nrs pain levels. nrs pain level the author compared the aggregate mean and standard deviation (sd) of nrs pain levels of patients who did not used npi (baseline sample) and those who used the npi (postimplementation sample). lastly, to assess the degree of change caused by the comfort menu implementation, the percentage of change was calculated by comparing mean nrs pain level from postimplementation to baseline. meddn the author calculated the medd -hour consumption per patient (appendix j). the author then calculated the net morphine equivalent daily dose (meddn) by deducting a patient’s baseline opioid use from the -hour opioid consumption used on the day that an npi was used. the sum meddn from all patients (numerator) divided by the total number of patients (denominator) produced the aggregate mean meddn score postimplementation. the author then compared the mean meddn scores of the baseline and post-comfort-menu implementation. additionally, the author compared the aggregate baseline and postimplementation mean and standard deviation (sd) meddn scores of all patients. lastly, to assess the degree of change caused by comfort menu implementation, the percentage of change were calculated by comparing mean meddn from postimplementation to baseline. los and hcahps pain satisfaction scores the author calculated los of the patients (baseline and postimplementation group) included in the project by counting the hospital stay from admission to the date of discharge. the hcahps pain satisfaction scores are acquired monthly by the nursing management. results: project manuscript a manuscript was created and submitted to the joint commission journal on quality and patient safety, the official journal of tjc. the joint commission journal on quality and patient safety is a peer-reviewed publication with goals of disseminating information to improve the quality and safety of health care. the submitted manuscript is shown in appendix m. discussion the npis improved all pain outcome indicators and los as evidenced by a decrease in nrs pain levels (a percent change of . %), a decrease in opioid consumption (a percent change of . %), an increase in hcahps pain satisfaction scores (a percent change of . %), and a decrease in los (a percent change of . %) as compared to baseline. there was a decrease, on average, in the aggregate mean nrs pain level from (baseline) to (postimplementation) out of ; clinically, this slight change could indicate a drop in the pain grade from severe to moderate, on average, after the implementation of the comfort menu. there was a clinically significant decrease in aggregate mean opioid consumption from meddn of . mg/day (baseline) to . mg/day (postimplementation). the decline of opioid consumption reduces a patient’s risk for opioid overdose. the cdc recommends that clinicians practice caution in increasing dosage greater than morphine equivalent per day as this increases the threshold risk for opioid overdose (cdc, n.d.). however, it should be noted that at the time of the implementation of the comfort menu, other house-wide opioid mitigating initiatives (e.g., staff education, opioid overdose tracking, to name a few) were concurrently being implemented at the institution. therefore, the decline of opioid use can also be attributed to the los which decreased from . days (baseline) to . days (postimplementation). the hcahps pain satisfaction score increased from . % to %. however, the increase of the hcahps pain satisfaction scores should be interpreted with caution because hcahps’ developers revised the question that assesses the pain experience in early . the revised hcahps pain satisfaction question assesses patients about hospital staff’s communication with them about their pain (“during this hospital stay, how often did hospital staff talk with you about how much pain you had?”). whereas, the question in the baseline sample asked patients to evaluate how often was their pain controlled (“during this hospital stay, how often was your pain controlled?” [tjc, ]). the change in question, as well as the concurrent hospital wide opioid reduction initiative, may have contributed to the improvement of hcahps pain satisfaction score. the majority of patients during the implementation period of the comfort menu used hot and cold therapy ( . %). since hot and cold therapy was the most commonly used npi, the mild reduction of pain outcome may be attributed to this specific npi. similar to current literature, the project outcome also showed that hot and cold therapy resulted in a mild reduction in pain scores (aciksoz, akyuz, & tunay, ; lewis et al., ; quinlan et al., ). although the result is mild, superficial heat or cold therapy is generally safe and effective and thereby recommended by the acp to be the first line of treatment for acute postoperative pain and subacute low back pain (qaseem et al., ). additionally, due to its easy accessibility, nurses and patients may tend to use it more in comparison to other npis. pet therapy ( . %) was the second most commonly used npi in this project. however, the nursing staff commented that one of the barriers of pet therapy’s utilization was the limited availability of pets since it was a volunteer type of service. the nurses involved with the qi project identified several approaches to improve the use of npis for their patients. these include offering the comfort menu consistently by the rns and ensuring communication with patients about their preference about which npi they are willing to try first thing during their morning rounds. also, due to issues of accessibility, certain npis such as acupuncture, reiki, meditation and pet therapy needed to be ordered or arranged in advance. another nursing suggestion includes encouraging npi education at the bedside, especially on admission, and after admitting a patient from the recovery room. lastly, nurses suggested that providers consider educating their patients at the clinic about the npis. by introducing the availability of npis as early as the preoperative stage, patients may take the time to learn more about them and decide which ones best fit with their preferences and what they know work for their pain. limitations the qi project was implemented in postsurgical spine patients and cannot be generalized to other patients who had other types of surgery. most patients used hot and cold therapy, thus improvement of pain outcomes may be attributed to this specific npi. however, there were not enough numbers of patients who used other forms of npis, therefore assessing the effects of rarely used npis on pain outcomes was not feasible. availability of information was dependent on whether the nursing staff documented the npis as a pain intervention, thereby the possibility of missing patients who received the npi during the implementation period is possible. nursing staff’s bias with regards to the type of npi may also have had an indirect impact on a patient’s choice of an npi. additionally, certain npis that required additional steps, such as ordering in the electronic health record or calling a department, may have discouraged interest amongst patients or staff if they were not readily available. conclusions the qi project of a comfort menu of npis showed that npis improved patients’ pain experience as evidenced by a decrease in nrs pain levels, a decrease in meddn opioid consumption, an increase in hcahps pain satisfaction scores, and a decrease in los as compared to baseline. the implementation of the comfort menu not only improved spinal surgery patients’ pain experience, it also conformed to tjc revised pain management requirements. however, caution is warranted in generalizing our results in that several pain management initiatives were being implemented concurrently during the period of this project. by providing patients the tools to reduce their pain and by including them in choosing the type of pain management treatments, patients may feel more empowered to utilize these npis to reduce their pain beyond their hospital stay. references aciksoz, s., akyuz, a., & tunay, s. 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( ) the efficacy of acupuncture in post-operative pain management: a systematic review and meta-analysis. plos one ( ): e . doi: . /journal.pone. appendix a the plan-do-study-act model note. pdsa cycle adapted for implementation of comfort menu (associates in process improvement, n.d.) appendix b table of evidence table acupuncture as npi for managing postsurgical spine pain purpose design & key variables sample & setting measures results conclusions & limitations to evaluate the effectiveness of acupuncture in postoperative pain. planned subgroup analysis (acupuncture, electroacupuncture, teas, and control) (wu et al., ) systematic review and meta-analysis using prisma guidelines iv: acupuncture and acupuncture related treatments. dv: assessed on first day of surgery  (pain scores)  (opioid analgesia use) medline, cochrane library, & embase searched from inception until sept. , . n= studies ic: adult > years, undergone surgery, received acupuncture. english or chinese language only. ec: auricular acupuncture, nonoriginal studies, outcomes (pain scores/opioid use) not presented quantitatively.  : pain intensity measured via nrs and vas : opioid analgesia use calculated using the cumulative amount (sum) of opioid (mg) in hours.  & : acupuncture and related treatment group show less pain and less opioid use compared to control (p< . ) subgroup result: acupuncture and teas has less pain compared to electroacupuncture and control. teas show significant opioid use (p< . ) acupuncture and other acupuncture related tx is effective in treating postoperative pain and reduce opioid use limitations: heterogenous type of surgeries, different controls, different types of acupuncture, only assessed first day of surgery, reduction of opioid side effects were not assessed. acupuncture treatment may serve as an effective adjunctive treatment for patients with postoperative pain. to evaluate the acupunctures’ effectiveness in treating acute postoperative systematic review and meta-analysis of rct studies central, medline, embase, pubmed, amed, cinahl, & chinese, assessed in different times ( . hr, hr, hr, hr, -hr, -hr, week, month,  decrease in vas pain scores with acupuncture tx (p= . ). while acupuncture treatment shows no change in opioid use. there is improvement purpose design & key variables sample & setting measures results conclusions & limitations pain following back surgery. (cho et al., ) iv: acupuncture tx dv:  (pain scores and opioid demand)  (adverse events of acupuncture) korean, japanese databases searched from inception until sept. . n= rct ic: rcts of acupuncture as tx for pain after back surgery, < week after back surgery, all language. ec: non-rct, needling on nonacupuncture sites, acupuncture plus herbal medicine, chronic postoperative pain, unable to distinguish whether it is acute or chronic pain, anesthesia side effects. months before and after surgery)  (pain scores measured via vas; opioid demand use calculated using the sum of opioid (mg))  adverse events of acupuncture  no statistical difference in opioid demands (p= . )  rct reported that there were no adverse events in pain on acute postoperative pain after back surgery. limitations: possible presence of performance bias on included studies, validity of use of relevant sham control, possible ethical issues with sham control. acupuncture tx may serve as an effective adjunctive treatment for patients with acute postoperative pain after back surgery. to assess the effectiveness of ias on postoperative pain and morphine-related side effects. (chung et al., ) single-blinded, sham controlled study with three groups iv: tx groups: .control (no ias) .ias (auricular acupressure with teas) .sham (acupoint stimulation without embedding seeds/pressure) dv: assessed during hours after surgery n= ( each group). treatment group (ias and sham) randomly assigned. dropout rate of . %. ic: back surgery, years or older, received general anesthesia, consent to pca use, return to ward directly from recovery room. ec: antiemetics or morphine use before baseline outcome: .pain assessed via vas .anxiety assessed via stai .depression assessed via tdq after surgery: .pain assessed via vas .opioid consumption calculated using the equianalgesic morphine consumption baseline outcomes: (vas, stai and tdq were not significantly different) after surgery: (assessed in different times during the hours after surgery) .vas showed significant decrease over time in ias group .morphine equivalent consumption is less in ias group (p= . ) ias showed improvement in pain, reduction in opioid consumption and side effects. limitations: presence of selection bias with nonrandomized cohort, nongeneralizable sample population, acute and chronic pain not distinguished. ias as type of acupuncture may serve purpose design & key variables sample & setting measures results conclusions & limitations .baseline preoperative pain, anxiety and depression .pain intensity, opioid consumption and morphine side effect after surgery. surgery, pacemaker, arrhythmia or epilepsy, opioid dependence, cardiovascular disease, abnormal shape of earlobes, lesions at application sites. orthopedic ward in a medical center in taiwan .number of morphine side effects measured from - (e.g. dizziness, nausea/vomiting, itching, sedation, hypotension) .morphine related side effects is less in ias (p< . ). between group difference (p= . ) as adjunctive tx for pain after lumbar spine surgery. to ( ) compare the effectiveness of acupuncture with conventional treatment to conventional treatment alone in patients with nonspecific acute low back pain. ( ) determine the specificity of acupuncture points and techniques administered to patients with nonspecific acute low back pain. (vas et al., ) rct design iv: treatment groups: ( ). conventional treatment alone (pharmacological treatment, remaining active, avoiding alarmism) ( - ). five -min sessions over weeks of acupuncture (true, sham or placebo acupuncture) with conventional treatment. dv:  outcomes: clinically relevant improvement in low back pain  outcomes: pain intensity; occupational disability; persistence of pain; other n= , randomized to four treatment groups with : : : allocation. acupuncture (true, sham & placebo) groups blinded except conventional treatment alone. completed weeks follow up. ic: ( ) new onset of nonspecific low back pain ( ) no prior acupuncture ( ) - years ( ) sign informed consent. ec: ( ) specific/ complicated pathology of low back pain ( ) absence from work due to low back pain ( ) takes anticoagulants  (clinically relevant improvement in low back pain) shown as > % improvement on the -point rmdq  a. pain intensity measured using visual analog scale - mm. b. occupational satisfaction assessed using a -point likert scale. c. fear and avoidance of low back pain evaluated using fear avoidance beliefs questionnaire. adverse effects such as epigastralgias / nausea with medication and increased pain post  outcome: clinically relevant improvement of > % on baseline rmdq; however, differences between acupuncture with conventional treatment and conventional treatment alone were statically significant (p=. ).  outcomes: a. pain intensity showed statistically significant difference among groups. true acupuncture group showed greater decrease of pain by . % as compared to conventional treatment alone of . %. b. occupational satisfaction showed a acupuncture with conventional treatment yields better outcome as compared to conventional treatment alone. limitations (no blinding between conventional treatment alone with acupuncture; acupuncture groups received special attention sessions in weeks; known positive patient expectations on acupuncture) acupuncture treatment may serve as an effective adjunctive treatment for patients with acute low back pain. purpose design & key variables sample & setting measures results conclusions & limitations psychological factors such as fear and avoidance of pain; collateral and adverse reactions from the treatment. ( ) pregnancy ( ) refused to sign informed consent. multi-center, -year study at primary health care centers in andalusia, spain. acupuncture assessed on all groups. measured at baseline, , weeks post treatment. higher relative risk for efficacy in treatment group (true with . ; sham with . ; placebo with . ) with respect to the conventional treatment only. c. fear avoidance to activity is lower among sham group ( . ) as compared to conventional group ( ). about . % had adverse reaction (nausea/epigastralgias) to medications and . % had increased pain after acupuncture note:  =primary; =secondary; amed=allied and complementary medicine database; central=cochrane central register of controlled trials; cinahl= cumulative index to nursing and allied health literature; dv=dependent variable; ec=exclusion criteria; ias=integrative acupoint stimulation; ic=inclusion criteria; iv=independent variable; mg=milligram; nrs=numerical rating scale; pca= patient controlled analgesia; prisma= preferred reporting items for systematic reviews and meta-analyses; rct=randomized controlled trial; rmdq=roland morris disability questionnaire; stai=state anxiety inventory; tdq=taiwanese depression questionnaire; teas=transcutaneous electric acupoint stimulation; tx=treatment; vas=visual analog scale table mind-body therapies as npi for managing postsurgical spine pain purpose design & key variables sample & setting measures results conclusions & limitations to assess effectiveness of psychological treatments in managing postsurgical pain, using rct studies. (nicholls et al., ) systematic reviews of rcts iv: psychological tx (including cbt, act, or mindfulness) dv: pain intensity, pain disability medline, medline- in-process, embase & embase classic, psycinfo searched from to . n= rcts ic: rct study; psychological intervention of cbt, act, or mindfulness; tx done prior to or months postsurgery; > years; english language. ec: secondary literature; non-peer- reviewed; conference proceedings; no outcome criteria assessment; nonsurgical pain; < years. pain intensity measured via nrs, vas, mcgill pain questionnaire & bpi pain disability measured via odi and cas rcts showed significant pain reduction. rcts showed improvements in pain disability. psychological tx showed significant improvement in pain and disability. limitations (most rct showed cbt tx; heterogeneous sample) psychological tx may serve as adjunct tx in managing postsurgical pain. to examine the effects of -minute psychosocial interventions (mindfulness, hypnotic suggestion & psychoeducation) to three-arm, parallel- group randomized controlled trial iv: arm & : single scripted -minute session for both n= mindfulness (n= ), hypnotic suggestion (n= ), psychoeducation (n= ).  (pain intensity & unpleasantness) numerical rating scale -  (relaxation, anxiety, pleasant body sensations & desire for  results: mind-body interventions significantly  pain intensity (p= . ; mindfulness= % & hypnotic suggestion= %) as compared to mindfulness & hypnotic suggestion interventions showed better  &  outcomes as compared to psychoeducation. purpose design & key variables sample & setting measures results conclusions & limitations hospitalized patients with acute pain. (garland et al., ) mindfulness & hypnotic suggestion. arm : single nonscripted -minute psychoeducation (pain coping strategies) dv:  outcomes (pain intensity & unpleasantness)  outcomes (relaxation, anxiety, pleasant body sensations & desire for opioids) ic: inpatient + years english speaking who reports intolerable or inadequate pain control ec: altered mental status, no/ pain, declined, discharge, unavailable due to medical procedure & non-english speaking single-site, -yr study conducted at hosp. in salt lake city opioids) numerical rating scale - . morphine equivalent daily dose calculates opioid dose in past hours prior to intervention. psychoeducation (p= . at %).  pain unpleasantness on mindfulness & hypnotic suggestion group.  results: mindfulness & hypnotic suggestion differed significantly on  outcomes except anxiety (seen on groups). no morphine equivalent daily dose changes on mindfulness & hypnotic suggestion. limitations include (no follow up data; mindfulness & hypnotic suggestion have overlapping instructions; psychoeducation did not control for effects of mind-body interventions; hypnotic suggestion not delivered by hypnotherapists). mind-body interventions (mindfulness & hypnotic suggestion) may still serve as an effective adjunct to pain management to evaluate the effectiveness of preoperative mind-body therapies on postoperative outcome measures. (nelson et al., ) systematic review using prisma guidelines. iv: mind-body tx (relaxation, guided imagery, hypnotic tx) given preoperatively dv: postoperative outcomes (anxiety, pain, analgesic use, vital signs, length of stay) electronic databases of medline, cinahl, &psycinfo searched up to . n= studies included ( patients) ic: rcts or quasi- rcts; english; > years; pts underwent surgery; prospective before-after surgery design; outcome measures (psychosocial measures anxiety, pain scores assessed via nrs, vas vital signs (bp, hr, rr) anxiety (stai) length of hospital stay from admission to discharge guided imagery showed effective in reducing postoperative pain levels. guided imagery, hypnosis and relaxation showed marginal improvement in postoperative anxiety level and pain perception. half of the studies showed vital signs improvement. mind-body therapies showed some improvement in postoperative outcomes (e.g. pain, anxiety, vital signs) limitations (english only; most rct have small sample size, some rct studies unable to show sufficient randomization details; heterogeneous sample) purpose design & key variables sample & setting measures results conclusions & limitations depression); assessment of outcome measures pre-postsurgery; control group. ec: intervention solely on pharmacotherapy, counseling, education; mind-body tx combined with pharmacotherapy; family participation; day procedure; surgical procedure only with local anesthetic; postoperative only design. although further study is necessary, mind- body treatment may serve as adjunctive tx in managing postsurgical pain. note: act=acceptance and commitment therapy; bp=blood pressure; bpi=brief pain inventory; cam=complementary & alternative medical; dept=department; cas= cumulated ambulation score; cbt=cognitive behavioral therapy; cpses=chronic pain self-efficacy scale; dn =douleur neuropathique questionnaire; dv=dependent variable; ec=exclusion criteria; emg=electromyogram; hads=hospital anxiety and depression scale; hcahps=hospital consumer assessment of healthcare providers and systems; ic=inclusion criteria; iv=independent variable; odi= oswestry disability index; pass- = pain anxiety symptoms scale- item; pcs= pain catastrophizing scale; pt=physiotherapy; rct=randomized controlled trial;; rmdq=roland morris disability questionnaire table music therapy as npi for managing postsurgical spine pain purpose design & key variables sample & setting measures results conclusions & limitations to evaluate the effects of music therapy on postsurgical spine pain and comfort. (mondanaro et al., ) mixed-method design iv: music therapy group ( -minute session w/in hours after surgery + standard of care). control group (standard of care) dv:  = pain scores  = anxiety and depression, patient’s perception of fear- related movement, and pain experience. n= randomized to each group. ic: pt who underwent anterior, posterior, antero-posterior spinal fusion; signed consent. ec: dx with clinical psychosis or depression prior to spine surgery study done at dept of orthopedic surgery at spine institute of new york.  outcome pain scores assessed via vas score (before and after intervention)  outcomes (before and after intervention) a. anxiety and depression via hads scale b. pt perception of fear-related movement via tsk. c. pain experience illustrated via cas.  outcome pain scores showed statistically significant improvement post music therapy (p= . )  outcomes no difference in hads & tsk on both groups. music therapy showed significant decrease in pain scores. limitations (small number of participants; narrow treatment window; one session only) music therapy can be an adjunct tx in managing postsurgical spine pain. to evaluate music therapy’s effectiveness in postsurgical thoracic pain, anxiety and vital signs. (liu & petrini, ) rct design iv: intervention group ( -min music tx for days + standard of care). control group (standard of care). dv: .pain score . anxiety level .vital signs (bp, hr and rr. opioid use n= randomized to each group. ic: pts for thoracic surgery; > years; chinese literate; alert and orientedx . ec: vision or hearing deficits; not willing to participate; inability to complete questionnaires; emergency surgeries. all measures assessed from baseline, postoperative day , and . pain score measured using faces pain scale. anxiety level assessed using stai scale. measurement of vital signs not specified. opioid use calculated via pca usage. dss there is a significant difference in pain scores (p= . ) favoring music therapy. music therapy also shows significant decrease in anxiety, sbp and hr. no difference seen in rr, dbp, dss and pca use. music therapy showed pain improvement, less anxiety and stable vital sings. limitations (music choice limited to researchers chosen music; intervention group received added attention; limited days of treatment) music therapy may serve as adjuvant purpose design & key variables sample & setting measures results conclusions & limitations -month study done at two tertiary hospitals in wuhan, china. consumption also measured in mg. treatment in managing postsurgical pain. to assess effectiveness of music therapy in postoperative recovery, using all rcts. (hole et al., ). systematic review and meta-analysis. iv: music therapy dv: outcome measures for postoperative care (pain, analgesia use, anxiety, length of stay). subgroup outcomes (pt choice of music, timing of intervention, general anesthesia use or not). electronic databases of medline, embase, cinahl, and cochrane central searched from - . n= rcts included ( patients) ic: rct; any language; adult pt having surgery (w/ or w/o sedation/anesthesia; music therapy initiated before, during or after surgery; outcomes (pain, analgesia needs, anxiety, infection rates, length of stay, satisfaction). ec: central nervous system or head/neck surgery; non-rct; no music therapy; control given music tx; systematic reviews; combined interventions or outcomes. pain measure via vas or nrs. analgesia use (opioid or nonopioid) assessed as indirect pain measures. anxiety measured by stai. length of stay from admission to discharge. music therapy reduced postoperative pain ( rct), anxiety ( rct), analgesia use ( rct) and improve satisfaction ( rct). music therapy shows no effect on length of stay ( rcts). marginal (but not significant) decrease in pain scores when pt choose their own music. timing of music therapy showed better pain control, anxiety and less analgesia use when given preoperatively. music therapy showed improvement in pain, anxiety, satisfaction and analgesia use. limitations (wide inclusion criteria; heterogeneous sample; older studies included) music therapy can be a noninvasive and safe adjunct tx in managing postsurgical pain. to review the current evidence on music therapy’s effectiveness systematic review iv: music therapy electronic databases of medline, scopus, cinahl, cochrane, pain scores assessed via vas, nrs, mcgill pain questionnaire. rcts showed statistically significant pain reduction. music therapy showed significant pain, vital purpose design & key variables sample & setting measures results conclusions & limitations as adjuvant tx on controlling pain in hospitalized patients. (cole & lobiondo- wood, ) dv: pain and other symptoms (medication use, vital signs and anxiety level) and natural standard databases searched from to . n= rct ( patients) ic: rct; inpatient setting/hospitalized pts; english only; adult patients. ec: nonhospitalized; non-english studies; non-rcts; no music therapy. vital signs measured (bp, hr, rr and oxygen saturation) opioid use measured using oral morphine conversion. anxiety level measured via muscle tension inventory scale, nrs, faces anxiety scale, stai, rct showed improvement in patient’s vital signs. rct showed statistically significant decrease in analgesia use. rct showed significant anxiety reduction. signs and anxiety improvement. limitations (only rcts are surgical patients; heterogeneous samples) music therapy can be an effective adjunct tx in managing acute pain. to determine music therapy’s effectivness as adjunct tx in managing postoperative pain management, anxiety and environmental noise satisfaction. (comeaux & steele- moses, ) quasi-experimental nonequivalent control group design iv: intervention group ( -day music tx mins after analgesia + standard of care). control group (standard of care). dv: pain management, anxiety and environmental noise satisfaction. n= ic: anticipated - day admission; alert and oriented; > years; english literate; hematology and oncology diagnosis. ec: < -day admission, < , non-english literate. study done at -bed inpatient surgical unit at our lady of lake regional medical center, baton rouge, la. pain, anxiety and environmental noise satisfaction assessed via stai and two- standardized questions from press-ganey survery. statistically significant improvement pain management and noise satisfaction among music therapy group seen over time (p< . ). no change on state anxiety seen. music therapy is effective in improving pain management and noise reduction. limitations (weaker design; control group pt are listening to music on their own; small sample size; limited tx time) music therapy can serve as adjunct tx in managing acute pain. note:  =primary; =secondary; bp=blood pressure; cas=color analysis scale; cpses=chronic pain self-efficacy scale; dbp= diastolic blood pressure; dss=diclofenac sodium suppository; dv=dependent variable; ec=exclusion criteria; hads=hospital anxiety and depression scale; hcahps=hospital consumer assessment of healthcare providers and systems; hr=heart rate; ic=inclusion criteria; iv=independent variable; mg=milligram; mm=millimeter; nrs=numerical rating scale; pass- = pain anxiety symptoms scale- item; pca=patient controlled analgesia; pcs= pain catastrophizing scale; pt=physiotherapy; rct=randomized controlled trial; rmdq=roland morris disability questionnaire; rr=respiratory rate; sbp=systolic blood pressure; stai=state trait anxiety inventory; tsk= tampa scale of kinesiophobia; tx=treatment; vas=visual analog scale table heat/cold therapy as npi for managing postsurgical spine pain purpose design & key variables sample & setting measures results conclusions & limitations to determine the effectivness of cold therapy on postsurgical spine fusion pain and analgesia use. (quinlan et al., ) rct design iv: intervention group (repositioning and cold tx for mins). control group (repositioning only) dv:  outcome=pain score outcome= analgesia use and perceived benefit of cold therapy n= randomly assigned to cold therapy intervention or control group. dropout rate of %. ic: pt spine fusion surgery; english speaking; > years ec: non-english speaking; cold intolerance; hx of ra, scleroderma, reynaud’s, dementia; prior cold tx use before back surgery. post op ec (prolonged pacu stay, additional surgery). study done at inpatient surgical unit, usa  outcome =pain scores assessed using nrs -point scale (before and after tx). total of pain check.  outcome= analgesia use converted to oral morphine equivalent ratio. perception of benefit evaluated using a single item, yes or no with the question “did the intervention help to reduce your pain”? marginal pain reduction seen in intervention group across all pain checks. not statistically significantly different with control group. intervention group used less analgesia than control group (p= . ). no different perception of pain due to intervention between groups. cold therapy showed marginal pain reduction and statistically significant analgesia use. limitations (larger sample size is preferable; only specific to one surgical unit) further studies are necessary but cold therapy can be an adjunctive tx for postsurgical spine pain. to evaluate the effect of self-administered hot/cold applications on pain, functional status and quality of life on patients with primary knee oa. rct design iv: two intervention group (hot application & cold application group) hot/cold tx mins x/day for weeks + standard tx. n= ( on each group) hot application group, cold application group and control group. ic: new dx primary knee oa based on acr and kellgren- pain score assessed using vas (baseline, after tx and weeks after tx) functional status assessed using womac index with likert scale. statistically significant decrease of pain scores (pre-post implementation) at rest, movement and sleep among hot and cold intervention group, but not significantly hot/cold therapy showed minimal improvements in pain, functional status and quality of life. limitations (hot/cold tx taught to the patients purpose design & key variables sample & setting measures results conclusions & limitations (aciksoz, akyuz, & tunay, ) control group (standard orthopedic tx). dv: .pain score .functional status .quality of life lawren criteria; able to implement tx regularly; able to receive standard oa tx; - years old; normal blood test; literate; ankara residents; participate voluntarily. ec: dx w/ inflammatory joint disease; hx of knee surgery w/in months; skin lesion; arterial/venous disorder; hot/cold allergies; neurological disease, receive standard tx other than oa tx. -month study done at orthopedics and traumatology outpatient dept of gulhane military medical education and research hospital in ankara, turkey quality of life assessed using nhp health status scale. different from control group. womac scores shows statistically significant difference from pre- post among two intervention group (p< . ). nhp scores showed improvement among two intervention groups but not statistically different from control group. but actual observation not done) further research is necessary; however, hot/cold therapy may serve as adjunctive tx in managing pain. to assess the effectiveness of superficial heat as adjunct therapy to exercise program in patients with distal end radius fractures. prospective clinical trial design iv: intervention group ( sessions-- minutes each with superficial n= participants divided into two groups via randomization. ic: patients with distal end radius fracture manage with close pain assessed using vas (before and weeks after treatment) rom using goniometer and prwe. intervention group showed greater pain reduction compared to control (p< . ). intervention group showed rom heat therapy showed significant pain reduction and rom improvement. limitation (small sample; effect on purpose design & key variables sample & setting measures results conclusions & limitations (y, s, & a, ). heat followed by therapeutic exercises). control group (therapeutic exercise only) dv: .pain scores .rom of wrist and radio-ulnar joints reduction - weeks; pt referral. ec: patients who underwent surgery; hx of other fracture; crps; neurological or musculoskeletal disorder; vascular disorders, open wounds, fever, htn. study done at physical therapy opd of k.e.m. hospital, mumbai. improvement on wrist flexion and extension (p< . ) but not on pronation and supination. prwe score showed improvement in both groups. treatment group showed statistically significant prwe improvement (p< . ). dominant hand not evaluated) heat therapy may serve as adjunct treatment to acute pain. to ( ) assess effects of superficial heat therapy on both paraspinal muscle activity and stature recovery on patients with chronic low back pain. ( ) assess whether heat therapy had any short- term effect on pts’ psychological factors. (lewis et al., ) repeated measures design. iv: superficial heat therapy dv: . paraspinal muscle activity assessed via emg; stature recovery assessed via stadiometer . pain intensity via numerical rating scale . psychological factors (disability, anxiety and depression, functional self-efficacy, fear of movement, catastrophizing, pain- related anxiety). n= , completed, dropout rate of = . % ic: ( ) chronic low back pain patients (waitlist/attending at rehab programs; yellow flag risk factors) ( ) asymptomatic patients (no recurrent or persistent back pain) ec: ( ) chronic low back pain patients (nerve root compression; central nervous system impairment; progressive motor deficit; sphincter impairment; red flags) both paraspinal muscle activity (via emg) & stature recovery (via stadiometer) assessed at rest, during reference voluntary contraction and post -min unloading period. pain intensity measured using numerical rating scale ranging from - . psychological factors measured using self- report tools; disability using rmdq -item tool; anxiety & depression using hads; functional self- paraspinal muscle activity was not significantly different on % of reference voluntary contraction between sessions of heat therapy. nonnormalized paraspinal muscle activity nonsignificant. (p= . ) even when patients with  pain included. stature recovery was not significantly different with heat therapy. numerical rating scale showed higher pain ratings of at least / while wearing heat use of superficial heat therapy showed a positive decrease in muscle activity on patients with chronic low back pain. additionally, heat therapy showed a positive short-term psychological effect on patients. limitations (use of analgesics; reliability of self-report measures) further studies are necessary; however, heat therapy may serve as adjunct treatment for chronic low back pain. purpose design & key variables sample & setting measures results conclusions & limitations ( ) patients with recurring low back pain, had low back pain within the last years). single-site, pt dept. at a hospital in manchester, uk. efficacy using functional subscale of cpses; fear of movement using tsk; catastrophizing using pcs; pain-related anxiety using pass- . wrap. excluded patients have pain level of or more difference in visits stature recovery were significantly correlated with changes in nonnormalized paraspinal muscle activity, disability, catastrophizing, pain and fear of movement. note:  =primary; =secondary; cpses=chronic pain self-efficacy scale; crps=complex regional pain syndrome; dv=dependent variable; dx=diagnosed; ec=exclusion criteria; emg=electromyogram; hads=hospital anxiety and depression scale; hcahps=hospital consumer assessment of healthcare providers and systems; htn=hypertension; hx=history; ic=inclusion criteria; iv=independent variable; nhp=nottingham health profile; nrs=numerical rating scale; oa=osteoarthritis; pacu=post anesthesia care unit; pass- = pain anxiety symptoms scale- item; pcs= pain catastrophizing scale; prwe=patient rated wrist evaluation scale; pt=physiotherapy; ra=rheumatoid arthtitis; rct=randomized controlled trial; rom=range of motion;rmdq=roland morris disability questionnaire; tsk= tampa scale of kinesiophobia; tx=treatment; uk=united kingdom; vas=visual analog scale; womac=western ontario and mcmaster universities osteoarthritis index. table animal-based/pet therapy as npi for managing postsurgical spine pain purpose design & key variables sample & setting measures results conclusions & limitations to assess the effectiveness of animal- assisted therapy (therapy dogs) on postoperative (tha and tka) patients in relation to their pain perception and hospital stay satisfaction. (harper et al., ) rct design iv: ( ) treatment group (three -minute visitation from a therapy dog minutes prior to physical therapy) ( ) control group (physical therapy per hospital protocol, normal hospital routine) dv: ( ) pain intensity levels measured via visual analog scale measured on postoperative days and ( ) patients satisfaction of hospital stay via hcahps score acquired at time of discharge. n= randomized to either treatment or control group. ic: ( ) > years ( ) postoperative unilateral tka or tha ( ) english literacy ( ) sign informed consent. ec: ( ) afraid of dogs ( ) dog allergy ( ) immunosuppressed ( ) undergoing chemotherapy ( ) delirium ( ) discharged on day ( ) same room patients on treatment and control group; roommate who objected. single-site, -month study done tertiary care hospital pain intensity assessed using visual scale analog (immediately after st, nd & rd physical therapy & prior to analgesic medications). hcahps score (at time of discharge) treatment group showed statistically significant decrease in visual analog scale pain scores as compared to control group. (p=<. on all three sessions). hcahps score showed significant satisfaction in treatment group (nursing communication p= . & pain management p= . ) as compared to control group. animal-assisted therapy showed improved pain intensity and hcahps score on postoperative patients who undergone tka and tha. limitations: (no blinding; only one dog and one handler; possible variability of patient’s response to different dogs/handlers; dose and timing of analgesic administration not controlled). it is safe to say that animal-assisted therapy dogs are effective adjunct therapy for some orthopedic postoperative pain control. to evaluate the effectivness of brief animal-assisted therapy to patients/families/staff open-label design iv: therapy dog visits (interaction with the n= dog therapy ( patients, family/friends, staff), n= waiting room control symptom factors assessed via -point nrs (before and after visit for both groups) significant improvement on all symptom factors post therapy dog group (patient and family) brief animal-assisted therapy showed improvement in patient’s pain/emotional distress. purpose design & key variables sample & setting measures results conclusions & limitations in an outpatient pain routine visits. (marcus et al., ) therapy dog prior to routine visit); control group (usual waiting room environment) dv: symptom factors (pain, fatigue, stress, aggravation, anxiety, sadness, irritability, calm, pleasant, & cheerful). mood (depression) and generalized anxiety level (baseline) ic: > years old who are willing to participate. ec: none two-month study done at outpatient, tertiary care, interdisciplinary pain clinic. mood assessed via phq- and anxiety level assessed via gad- (baseline only) clinical reduction of pain is . % (therapy group) vs . % (waiting control group). >pain relief with dog visits > minutes ( . %). baseline gad for therapy group is higher % vs control group . %. limitation (weak design; no blinding; single dog therapy; postsurvey completion done in a different day; one treatment only) animal-assisted therapy may serve as an adjunct treatment for chronic pain. note: dv=dependent variable; ec=exclusion criteria; gad- = general anxiety disorder; hcahps=hospital consumer assessment of healthcare providers and systems; ic=inclusion criteria; iv=independent variable; nrs=numerical rating scale; phq- = patient health questionnaire; rct=randomized controlled trial; tha=total hip arthroplasty; tka=total knee arthroplasty. table virtual reality as npi for managing postsurgical spine pain purpose design & key variables sample & setting measures results conclusions & limitations to measure the impact of d vr distraction experience versus d high-definition distraction video in hospitalized patients’ pain (tashjian et al., ) nonrandomized comparative cohort study iv: pain relievr - minute vr experience called and -minute nature video via d -inch high- definition screen dv: pain n= , pain relievr (n= ), d high- definition video (n= ). ic: hospitalized, + years, pain score of -  / numerical rating scale ec: patients who cannot consent; in contact isolation; with head wounds/bandages; history of vertigo; seizure; epilepsy; nausea and vomiting. single-site, -month study done at cedars- sinai medical center. pain scores quantified using a standard - point numerical rating scale. pain assessed pre-post ( minutes) intervention using a - point numerical rating scale, ranging from (no pain) to (worst pain). heart rate and blood pressure measured in vr group. potential adverse effects such as dizziness, vertigo, nausea/vomiting & seizures were also evaluated for this group. pain reduction was greater in virtual reality cohort ( %) compared to control ( . %). no significant differences in blood pressure or heart rate between pre-post vr. no adverse events reported in vr group. vr intervention showed a greater reduction of pain scores as compared to control group. further research is necessary in larger population; administer vr in longer duration; assessed opioid use by measuring medd; assess los; post discharge outcomes & assess vr’s cost- effectiveness vr may serve as an effective adjunct nonpharmacologic intervention for managing pain. to assess patient perspectives regarding vr-based rehabilitation post knee surgery. (minyoung et al., ) mixed-methods approach (qualitative and quantitative) iv: sessions ( . minutes each) total of minutes of vr- based exercise dv: n= ic: patients weeks post knee surgery, stand independently, normal mmse score > . ec: hx of epilepsy or pacemaker use. .pretreatment a. pain scores quantified using a - point numerical rating scale. b. physical dysfunction assessed using (lower extremity functional scale; activity-specific balance confidence pretreatment shows pain mean score of . / . no significant correlation between fss- scores to pain severity and physical dysfunction. vr-based rehabilitation program showed high “flow experience” for post-knee surgical patients. important to modify vr exercise’s level of difficulty. limitations (small participants; fss- purpose design & key variables sample & setting measures results conclusions & limitations .pretreatment assessment (pain score and physical dysfunction) .posttreatment assessment (patient’s flow experience) study done at join rehabilitation center in barunsesang hospital, seongnam, south korea. scale; single-leg stance; hip and knee rom; hip and knee muscle strength) . posttreatment a. flow experience assessed via fss- and kuueq individually, fss- showed sharper pain & hip-flexion angle causes clear goal recognition. total fss- score significantly higher than the norm value (p< . ). high level of flow experience . / . flow experience via kuueq high expectation of therapeutic effect ( %). intention of exercise adherence ( %). comparison to norm values were not post- knee surgical patients) vr may serve as an effective adjuvant to pain and can foster increase mobilization. to assess vr’s effectiveness as a distraction pain tool for patients undergoing hand dressing change. (guo, deng, & yang, ) rct design iv: intervention group (vr d movies for minutes before end of dressing change). control group (ask to close eyes or “conventional dressing repose”) dv: pain scores, anxiety levels and sense of involvement n= randomly divided into experimental and control group ( each) ic: serious hand injuries; debridement or suturing w/in hours of injury; years or older; able to complete the scale and volunteer for the research. ec: use of analgesics/interventions w/in hours after injury; < dressing changes; visual acuity pain scores assessed via vas scores (w/in minutes before and after dressing changes). anxiety levels assessed before dressing change via stai. sense of involvement (vr group only) assessed using the chinese version of commitment questionnaire ( - score, the > score = vr group shows significant vas score reduction compared to control group (from . to . , p=< . ). stai shows two groups’ anxiety level are comparable. vr group showed the higher commitment to vr space = increase pain control effect. vr as a distraction tool shows significant reduction of pain. limitation (variation in vr movies limited to one; vr movie only given on the last minutes before and not during the entire dressing change). vr may serve as an effective adjunct nonpharmacologic intervention for managing pain. purpose design & key variables sample & setting measures results conclusions & limitations < . ; hearing disorders, < cognitive ability. -month study done at outpatient surgical treatment facility in china. stronger sense or user input). note: d=two-dimensional; d=three-dimensional; dv=dependent variable; ec=exclusion criteria; ffs- = flow state scale ; hcahps=hospital consumer assessment of healthcare providers and systems; hx=history; ic=inclusion criteria; iv=independent variable; mm=millimeter; kuueq= korea university user experience question; los=length of stay; medd=morphine equivalent daily dose; mmse=mini-mental state examination; mp =media player; pcs= pain catastrophizing scale; pt=physiotherapy; rct=randomized controlled trial; rom=range of motion; stai=state trait anxiety inventory; vas=visual analog scale; vr=virtual reality appendix c csulb irb approval appendix d csmc irb approval appendix e comfort menu for patients note: comfort menu for patients. adapted from “improving your pain comfort items and services menu”, cedars-sinai . copyright by cedars-sinai. reprinted with permission. appendix f comfort menu instructional guide for nursing staff (source: prepared by chona c. melvin.) acupuncture  performed in- house an appointment basis only  need physician order  enter as nursing communication  “ok for acupuncture  telephone order virtual reality  no physician order needed  readily available during day shift  contraindications: cervical patients, n/v, seizures, contact isolation, etc.  will be available for use on the unit – locked in med room. please fill out log book pet therapy  available between am – pm if a pet volunteer is available that day (i.e. may not be available every day)  prioritized by call, so call early reiki / meditation  availability: by appointment only  need to enter order (scope of practice)  enter order for “consult to spiritual care”  click to add text: “reiki”  scope of practice  call spiritual care office hot/ cold items  do not place directly on incision site  hot/cold packs readily available in supply closet/med room  call central issues when out of stock music therapy  readily available on tv channels: - relaxation channel – classic rock – adult contemporary – lite classical – white noise  headphones provided in admission kit from volunteer services  available between am – pm if a musician volunteer is available that day (i.e. may not be available every day)  prioritized by call, so call early appendix g csmc clearance to disseminate and publish appendix h data extraction tool demographic case # age gender current type and level of spine surgery previous spine surgery baseline medd (source: prepared by chona c. melvin.) appendix i primary outcome extraction tool case# primary outcomes pod# -hour mean nrs pain level pod# -hour medd use (based on medd calculation appendix j) meddn= (baseline medd – -hour medd use) pod# when npi was use number of npi used on entire los specific npi used on entire los (source: prepared by chona c. melvin.) appendix j morphine equivalent daily dose calculation opioid (generic/trade name) daily dose oral morphine equivalent md/day conversion codeine fentanyl hydrocodone hydromorphone methadone morphine oxycodone sum morphine equivalent daily dose (medd) note. adapted from the opioid prescribing guidelines and equianalgesic chart (american pain society, ) appendix k postimplementation survey questionnaires for nursing staff . has any of your patient used non-pharmacological pain treatment in the comfort menu? if yes, please check (all) that is most commonly requested by the patient: ___ acupuncture ___ pet therapy ___ hot/cold therapy ___ virtual reality ___ music therapy ___ reiki/meditation . has any of your patients refused the use of the comfort menu? if yes, please indicate the reason for refusal: ________________________________________________________________________ ________________________________________________________________________ . do you have any suggestions on how we can encourage our patients to utilize the npis from the comfort menu? ________________________________________________________________________ ________________________________________________________________________ (source: prepared by chona c. melvin.) appendix l equianalgesic chart note: adapted from the opioid prescribing guidelines and equianalgesic chart (american pain society, ) appendix m manuscript submitted to the joint commission journal on quality and patient safety, the official journal of the joint commission abstract using comfort menu to impact pain experience background: pain management following spine surgery remains challenging. pharmacological interventions are often the first line of treatment. however, these approaches may have side effects. additionally, stakeholders of a -bed surgical spine unit in a large california magnet hospital noted that patients had a prolonged hospital length of stay (los) when compared to patients from other surgical units. finally, the hospital consumer assessment of healthcare providers and systems (hcahps) pain satisfaction scores were lower than the desired goal, signaling a need for an improved pain management approach. methods: a quality improvement (qi) project was implemented at a spine surgical unit from july to september , . the purpose of this qi project was to improve patients’ pain experience as measured by pain indicators and los in postsurgical spine patients through the development, implementation, and evaluation of a comfort menu of npis. the comfort menu contained the following npis: acupuncture, pet therapy, hot/cold therapy, virtual reality, music therapy, and reiki/meditation. postintervention assessment of pain scores and documentation of opioid consumption through the hospital’s electronic medical record (emr) was performed by nursing staff as part of standard of care. results: all pain indicators and los improved post-comfort-menu implementation. the aggregate mean numerical rating scale (nrs) pain level decreased from / (baseline sample) to / (postimplementation sample), which was a percent change of . %. also, the aggregate mean net opioid consumption from morphine equivalent daily dose (meddn) decreased from . mg/day (baseline sample) to . mg/day (postimplementation sample), which was a percent change of . %. additionally, hcahps pain satisfaction score increased from . % (baseline sample) to % (postimplementation sample), which was a percent change of . %. lastly, los decreased from . days (baseline sample) to . days (postimplementation sample), which was a percent change of . %. conclusion: the implementation of the comfort menu not only improved spinal surgery patients’ pain experience as evidence by an improvement of pain indicators and los, it also conformed to the joint commission (tjc) revised pain management requirements. by providing patients tools to reduce their pain and by including them in choosing the type of pain management treatments, patients may feel more empowered to utilize these npis to reduce their pain beyond their hospital stay. introduction acute postsurgical pain following spine surgery is a common experience (montgomery & mcnamara, ). spine surgery is identified in the top six of surgical procedures that cause a high level of pain (bajwa & haldar, ; gerbershagen et al., ). inadequate pain management contributes to undesirable patient outcomes including chronic pain, increased length of stay (los) and disability (bajwa & haldar, ; gerbershagen et al., ). studies suggest that the use of nonpharmacological interventions (npis) such as mind-body treatment, acupuncture, music therapy, and animal-assisted therapy are effective adjuvants for postsurgical pain (blödt pach, roll, & witt, ; harper et al., ; korhan et al., ; vas et al., ). however, studies show that clinicians are often unaware of npis’ efficacy in alleviating acute pain (rhee et al., ; tick et al., ). stakeholders of a -bed surgical spine unit in a large california magnet hospital noted that patients have a prolonged los when compared to patients from other surgical units. baseline data of patients from the last quarter of the year showed that the average los was . days, which was beyond the goal of . days. one of the major barriers for discharge was pain. additionally, the hcahps pain satisfaction score for the spine unit was . %, which fell below the joint commission’s (tjc’s) goal of . %, signaling a need for an improved pain management approach. methods comfort menu development and implementation the development and implementation of a comfort menu consisting of six available npis aimed at improving patients’ pain experience following spine surgery. to establish baseline information the authors completed a preliminary needs assessment using a retrospective chart review of patients who did not use any npis from october to december . the baseline sample had a mean nrs pain level of out of and a mean meddn of . mg per hours on postoperative day were noted. also, the hcahps pain satisfaction score of . % for the unit during that period (october to december ) was below the desired goal of . %. lastly, the average mean los was . days. these findings led to the development of this qi project with the purpose of improving patients’ postsurgical spine pain experience. wherein, patients’ pain experience was measured by pain indicators (nrs pain level, opioid consumption through meddn calculation, and hcahps pain satisfaction score), and hospital los. the plan-do-study-act (pdsa) model (institute for healthcare improvement [ihi], n.d.) for improvement was used to guide this project. the first step of the pdsa model involved planning. in this project, current pain management standards were reviewed, and the proposed project were discussed with stakeholders at the unit. a laminated comfort menu for patients (appendix e) was developed and included six npis (acupuncture, pet therapy, hot/cold therapy, virtual reality, music therapy, and reiki/meditation). a comfort menu instructional guide for nursing staff (appendix f) was also developed to assist the nurses (e.g., how to order an npi, office hours and phone numbers of the department providing the service). the second stage of the pdsa involved the implementation of the comfort menu, specifically, nurses educated patients regarding the availability of a comfort menu at the beginning of their shifts and intermittently after that. to enhance ease of use and accessibility, the comfort menu was made available in every patient’s room and around each nursing station. also, nurses documented the npi interventions that a patient chose and postintervention pain scores. in the third stage, the pain indicators (nrs pain level, hcahps pain satisfaction scores, and meddn) and los were studied and compared from baseline (october to december ) to post-comfort-menu implementation (july to september , ). the meddn was calculated using an equianalgesic chart from the american pain society ( ). also, the nursing staff at the surgical unit were asked to complete a three-item open-ended survey (appendix k) to document their perceptions of the comfort menu. lastly, the act stage commenced with the enumeration and discussion of the challenges and barriers encountered during the qi project implementation as well as plans for future adjustments based on lessons learned. these included early introduction of npis to patients (presurgical admission), consistent nurse to patient communication of npis availability (upon admission or throughout the shift), house-wide teaching of npis to all hospital staff, and exploration of other npis that may be beneficial to the patients. setting and ethics the project was implemented in a -bed unit for spine surgery in a nonprofit, tertiary, level trauma magnet hospital located in the greater los angeles area. the institutional review board (irb) at the project hospital exempted the project from review because the qi project was considered nonresearch and did not require oversight by the irb. measures the outcomes were measured by calculating the aggregate mean nrs pain level, the meddn per -hour period, and the hospital los. the meddn was calculated by deducting a patient’s baseline opioid use (total medd consumption before surgery) from the medd consumed on the day that an npi was used. the meddn showed an actual measurement of opioids consumed as a result of the acute pain from spine surgery versus opioid consumed from chronic pain prior to the current surgery. the los outcome of the patients (baseline and postimplementation sample) was calculated by counting the days from admission to the date of a patient’s discharge. the hcahps pain satisfaction scores were acquired monthly by the nursing management. results a total of patients were involved in this project. baseline data were established based on patients who did not use any npis in the period prior to initiating the comfort menu. the data on patients who used the npis after the implementation of the comfort menu were used to assess the outcomes of implementation of the comfort menu. patients’ demographics and clinical characteristics are summarized in table . table . sample demographics (n = ) baseline (n = ) postimplementation (n = ) age ( ) range: - median ( ) range: - median gender female ( . %) male ( . %) female ( . %) male ( . %) previous spine surgery yes ( . %) no ( . %) yes ( . %) no ( . %) level of surgery single ( %) multilevel ( %) single ( %) multilevel ( %) table summarizes the nrs pain level, meddn, and los at baseline and postimplementation of the comfort menu. the results showed that baseline patients experienced severe pain ( to out of nrs pain level) on average (mean nrs pain level = , sd = . ), as compared to patients in post-comfort-menu implementation of moderate pain ( to out of nrs pain level) on average (mean nrs pain level = , sd = . ). patient’s pain perception slightly decreased from baseline to postimplementation period. it is important to bear in mind that these patients undergone spine surgery, wherein the presence of pain, sometimes high level of pain is a common experience (bajwa & haldar, ; gerbershagen et al., ; montgomery & mcnamara, ). the second pain indicator of meddn was calculated by deducting a patient’s baseline opioid use from the -hour opioid consumption used. results showed that baseline patients have a higher opioid requirement (mean meddn= . , sd = . , median= . , range= - . to . ), as compared to patients in post-comfort-menu implementation (mean meddn= . mg, sd= . , median= . , range = - . to . ). one patient from the baseline sample used about mg meddn in a -hour period and was considered an outlier thereby it was removed in calculating the mean meddn. in addition, the average mean los of baseline patients was higher at . (sd = . ), as compared to postimplementation period of . (sd = . ). while stakeholders from the spine surgical unit noted that pain was one of the barriers for early discharge, there are other factors that can contribute to patient’s increase in los. variables other than pain were not explored in this project. the percentage changes on nrs pain level, meddn, los, and hcahps pain satisfaction scores from baseline to postimplementation of the comfort menu was summarized on figure . table . baseline and postimplementation outcome scores baseline (n = ) a mean (sd) median range postimplementation (n = ) b mean (sd) median range nrs . ( . ) . . - . . ( . ) . . - . meddn . ( . ) c . - . - . . ( . ) . - . - . los . ( . ) . . - . . ( . ) . . - . note. nrs = numerical rating scale; meddn = net morphine equivalent daily dose; los = length of stay. athe number of patients ( ) who did not use any npis prior to implementation of the comfort menu in the assessed sample. bthe number of patients ( ) who used npis after the implementation of the comfort menu. cone patient from baseline group who used meddn was removed in calculating the mean meddn. percent change of outcomes from baseline to postimplementation figure . a decrease in numerical rating scale (nrs) pain levels (a percent change of . %), a decrease in net morphine equivalent daily dose (meddn) opioid consumption (a percent change of . %), a decrease in length of stay (los) (a percent change of . %), and an increase in hospital consumer assessment of healthcare providers and systems (hcahps) pain satisfaction scores (a percent change of . %) as compared to baseline. a total of nine members of the nursing staff completed the survey given after post-comfort- menu implementation. all of them identified the hot/cold therapy as the most commonly requested npi, followed by pet therapy and reiki/meditation. one nurse pointed out that one patient refused the comfort menu and expressed preference for pharmacological interventions. another nurse stated that another patient refused the npi and preferred that it was given after the pain medication, not before, or with, it. however, out of nurses stated that patients were open to the npis offered in the comfort menu. / . mg . days . % / . mg . days % ( . %) ( . %) ( . %) . % nrs meddn los hcahps pain satisfaction scores baseline post-implementation % change decrease % change increase discussion the npis improved all pain outcome indicators and los as evidenced by a decrease in nrs pain levels (a percent change of . %), a decrease in meddn opioid consumption (a percent change of . %), an increase in hcahps pain satisfaction scores (a percent change of . %), and a decrease in los (a percent change of . %) as compared to baseline. there was a decrease, on average, in the aggregate mean nrs pain level from (baseline) to (postimplementation) out of ; clinically, this slight change could indicate a drop in the pain grade from severe to moderate, on average, after the implementation of the comfort menu. there was a clinically significant decrease in aggregate mean opioid consumption from meddn of . mg/day (baseline) to . mg/day (postimplementation). the decline of opioid consumption reduces a patient’s risk for opioid overdose. the cdc recommends that clinicians practice caution in increasing dosage greater than morphine equivalent per day as this increases the threshold risk for opioid overdose (cdc, n.d.). however, it should be noted that at the time of the implementation of the comfort menu, other house-wide opioid mitigating initiatives (e.g., staff education, opioid overdose tracking, to name a few) were concurrently being implemented at the institution. therefore, the decline of opioid use can also be attributed to the los which decreased from . days (baseline) to . days (postimplementation). the hcahps pain satisfaction score increased from . % to %. however, the increase of the hcahps pain satisfaction scores should be interpreted with caution because hcahps’ developers revised the question that assesses the pain experience in early . the revised hcahps pain satisfaction scores question assesses patients about hospital staff’s communication with them about their pain (“during this hospital stay, how often did hospital staff talk with you about how much pain you had?”). whereas, the question in the baseline sample asked patients to evaluate how often was their pain controlled (“during this hospital stay, how often was your pain controlled?” [tjc, ]). the change in question, as well as the concurrent hospital wide opioid reduction initiative, may have contributed to the improvement of hcahps pain satisfaction score. the majority of patients during the implementation period of the comfort menu used hot and cold therapy ( . %). since hot and cold therapy was the most commonly used npi, the mild reduction of pain outcome may be attributed to this specific npi. similar to current literature, the project outcome also showed that hot and cold therapy resulted in a mild reduction in pain scores (aciksoz, akyuz, & tunay, ; lewis et al., ; quinlan et al., ). although the result is mild, superficial heat or cold therapy is generally safe and effective and thereby recommended by the acp to be the first line of treatment for acute postoperative pain and subacute low back pain (qaseem et al., ). additionally, due to its easy accessibility, nurses may tend to administer it more in comparison to other npis. pet therapy ( . %) was the second most commonly used npi in this project. however, the nursing staff commented that one of the barriers of pet therapy’s utilization was the limited availability of pets since it was a volunteer type of service. the nurses involved with the qi project identified several recommendations to improve the use of npis for their patients. these include offering the comfort menu consistently by the rns and ensuring communicating with patients about their preference about which npi they are willing to try first thing during their morning rounds. also, due to issues of accessibility, certain npi such as acupuncture, reiki, meditation and pet therapy needed to be ordered or arranged in advance. another nursing suggestion includes encouraging npi education at the bedside, especially on admission, and after admitting a patient from the recovery room. lastly, nurses suggested that providers consider educating their patients at the clinic about the npis. by introducing the availability of npis as early as preoperative stage, patients may take the time to learn more about them and decide which ones best fit with their preferences and what they know work for their pain. limitations the qi project was implemented in postsurgical spine patients and the results may not be applicable to other patients who had other types of surgery. most patients used hot and cold therapy, thus improvement of pain outcomes may be attributed to this specific npi. however, pain outcome assessments of the other forms of npis are not possible due to the limited number of its use. availability of information such as pain scores and npi as pain intervention was dependent on nursing staff’s documentation. thereby the possibility of missing patients who received the npi during the implementation period was likely. nursing staff’s bias with regard to the type of npi may also have had an indirect impact on a patient’s choice of an npi. additionally, certain npis that required additional steps, such as ordering in the electronic health record or calling a department, may have discouraged interest amongst patients or staff as it was not readily available. conclusions the qi project of a comfort menu of npis showed that npis improved patients’ pain experience as evidenced by a decrease in nrs pain levels, a decrease in meddn opioid consumption, an increase in hcahps pain satisfaction scores, and a decrease in los as compared to baseline. the implementation of the comfort menu not only improved spinal surgery patients’ pain experience, it also conformed to tjc revised pain management requirements. however, caution is warranted in generalizing our results in that several pain management initiatives were being implemented concurrently during the period of this project. by providing patients the tools to reduce their pain and by including them in choosing the type of pain management treatments, patients may feel more empowered to utilize these npis to reduce their pain beyond their hospital. this is the peer reviewed version of the following article: exploring nursing staff views of responsive behaviours of people with dementia in long- stay facilities clifford, c doody, o journal of psychiatric and mental health nursing , ( ), pp. - which has been published in final form at http://dx.doi.org/ . /jpm. this article may be used for non-commercial purposes in accordance with wiley terms and conditions for self-archiving. http://olabout.wiley.com/wileycda/section/id- .html#terms http://dx.doi.org/ . /jpm. http://olabout.wiley.com/wileycda/section/id- .html#terms a c c e p te d a rt ic le this article has been accepted for publication and undergone full peer review but has not been through the copyediting, typesetting, pagination and proofreading process, which may lead to differences between this version and the version of record. please cite this article as doi: . /jpm. this article is protected by copyright. all rights reserved. dr owen doody (orcid id : - - - ) article type : original article dementia responsive behaviours ms caroline clifford, dr owen doody short title: responsive behaviours in dementia author details: caroline clifford msc, grad dip, rpn dementia champion health service executive kilkenny ireland corresponding author: dr owen doody phd, msc, bsc, rnid lecturer department of nursing and midwifery university of limerick limerick a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. ireland email: owen.doody@ul.ie conflicts of interest no conflict of interest has been declared by the authors. funding this research received no specific grant from any funding agency in the public, commercial, or not- for-profit sectors. exploring nursing staff views of responsive behaviours of people with dementia in long- stay facilities abstract introduction: caring for people with dementia and responsive behaviours can challenge nurses and little is known of their experiences. aim: to explore nurses views of supporting people with dementia and responsive behaviours in long-stay facilities. methods: a qualitative descriptive study utilising in-depth audio recorded interviews of nurses, recruited from private and public care facilities. qualitative content analyses conducted involving iterative comparisons of transcripts, summaries and memos; where coding, key quotes and tables were developed to determine themes. results: four themes emerged: recognising and understanding responsive behavior, resources and interventions to support people with dementia and responsive behavior, the impact of education on nursing practice, and the care environment. mailto:owen.doody@ul.ie a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. discussion: availability of staff, adequate time and financial restraints hinder nurses’ ability to provide care. access to ongoing education and being able to provide one-to-one care was valued as dementia specific education changed nursing practice. implications for practice: place of care was seen as dependent on; the type of responsive behaviour in question, the duration of the behaviour and the impact of the behaviour on the person, other residents and staff. dementia education needs to be accessible to all staff and a collaborative approach is necessary in order to develop management guidelines and support strategies. key words: dementia, nurses views, older person, person-centered, responsive behavior relevance statement this study highlights that nurses view of responsive behavior influences care provided and negative views can influence the quality of care and the person’s quality of life. nurses saw that to be person- centered they needed to enable personhood and see the person at the center of care. for this to occur nurses need to see responsive behaviours as the person’s inability to communicate a need and that these behaviours were outside the person’s control. without such an understanding care providers run the risk of silencing and dehumanising the person through not affording them the opportunity to express their views and/or wishes and becoming focused on managing behaviours, assessing problems and labeling deficits. accessible summary what is known on the subject  caring for people with dementia and responsive behaviours is challenging however, little is known of nurses experiences of responsive behaviours. a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. what this paper adds to the existing knowledge  to demonstrate understanding nurses need to be aware of their own actions, thoughts, attitudes and reactions.  time, education and management support are essential in enabling a person- centered approach.  a decision regarding the place of care is difficult to come to and given the drive to a person-centered approach there is a need to consider the views of people with dementia. what are the implications for practice  nursing staff supporting people with dementia should engage more frequently in reflective practice, ongoing education and decision making.  service providers/managers need to have an understanding of the complexities of caring for a person with dementia and responsive behaviours and provide their staff with relevant supports and education that is accessible to all staff. introduction responsive behaviour, is a relatively new term to describe what had been termed ‘behavioural and psychological symptoms of dementia (bpsd)’, ‘behaviours of concern’, ‘problem behaviour’, ‘neuropsychiatric symptoms’, ‘disruptive behaviour’ and ‘challenging behaviour’ and represent non- cogitative symptoms of dementia and include agitation, aggression, disturbed perception, thought context, mood or behavior (international psychogeriatric association ). the response of nursing staff to people with dementia and responsive behaviour can depend on their view of responsive behaviour. if the standard paradigm is applied then the nurse will believe the person with dementia is displaying random behaviours caused by damage to the brain by dementia or may be due to personality traits (pulsford et al. , duxbury et al. ). if however, a person-centered care (pcc) approach is followed, then nursing staff will look for meaning in the behaviour and understand that responsive behaviours are an attempt to communicate an unmet need (kitwood ). consequently, staff response will vary depending on which paradigm is favoured; to either treat the behaviour with medications, to sedate the person and stem the behaviour or to seek out bio- psychosocial triggers for the responsive behaviours. this study focuses on nurses’ views towards a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. people with responsive behaviours in long-stay care facilities in ireland. long-stay refers to wards and units providing care to people with dementia, receiving in-patient services on premises where nursing care is provided on a hour basis (health service executive ). this conceptual definition of long-stay care facilities encompasses all other terms describing relevant care facilities such as; nursing homes (public/private), extended care units, long-term care units and residential care units for older people. little qualitative evidence exists regarding nurses experiences of responsive behaviours and given the focus and importance of person-centered care it is timely to highlight nurses’ views of responsive behavior. background dementia is an umbrella term used to describe a group of symptoms characterised by behavioural changes and loss of cognitive and social functioning (cahill et al. ). there are several types of dementia, the most common being alzheimer type dementia followed by vascular type, multi- infarct dementia, frontotemporal dementia, dementia with lewy bodies, other types of dementia include; korsakoff’s disease, creutzfeldt-jakob disease (cjd), hiv associated dementia and younger onset dementia (alzheimer’s society of ireland ). responsive behaviour is the preferred term of people with dementia to describe; how their actions, words and gestures are a response, often intentional, that express something important about their personal, social or physical environment (alzheimer’s society of ontario ). however, these behaviours can be viewed negatively and are often why families seek support resulting in people with dementia being admitted to long-stay care facilities (zwijsen et al. ). with increasing numbers of people with dementia in long-stay care facilities; this increases the nurse’s likelihood of experiencing responsive behaviours (macdonald and cooper ). several factors have been identified as contributing to responsive behaviours such as; residents and caregiver characteristics, environment, workload, quality of the organisation and management of the facility (isaksson et al. ). pulsford et al. ( ) highlight that ‘responsive behaviours’ are common in long-stay care facilities while scott et al. ( ) indicate that ‘workplace violence is a global phenomenon’. both family and professional carers are often at the receiving end of threats, insults and at risk of injury from the people they are trying to support (duxbury et al. ), this is often the case for people caring for people with dementia as neuropsychiatric symptoms are common (zwijsen et al. ). % of staff report wandering and intrusiveness and % report physical aggression more than once a day (cubit a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. et al. ). while staff attitudes have been examined in quantitative research, staffs’ perspectives on patient aggression or response to people with dementia who are aggressive are under investigated within qualitative research (pulsford et al. , duxbury et al. ). the evidence that exists stems from lachs et al. ( ) examining ‘verbal and physical aggression’ from residents to nursing staff and nakahira et al. ( ) review of ‘attitudes towards dementia-related aggression’ amongst staff in japanese long-stay care facilities. however, while these studies do not examine the views of staff, they reveal that older more experienced staff with higher education levels and at higher grades had a more positive attitude towards patient related aggression (nakahira et al. , lachs et al. ). with the growing numbers of people with dementia, prevalence of responsive behaviours, focus on person-centered care and governments internationally striving to implement strategies/policies, there is a need to highlight nurses’ views of responsive behaviours to inform policy and management practices. methods aim to explore nursing staff views of supporting people with dementia and responsive behaviours in long-term care facilities. design a qualitative descriptive design was used to gain a comprehensive description of participants’ views through utilizing their own language to convey their thoughts, ideas, beliefs, and experiences (sandelowski ). as it recognises the value of generating data based on personal viewpoints, contextual factors and reflexive interpretation to provide a comprehensive understanding (sandelowski ). although description rather than interpretation is the aim, interpretation is always present, and the researchers’ own perspectives inevitably influence or transform the data (sandelowski ). sample upon ethical approval, access was sought through the directors of nursing who acted as gatekeepers and distributed the invitation letter, information sheet and expression of interest form to participants. purposive sampling was employed base on: participants having direct contact with people with dementia and responsive behaviours in a long-stay care setting, having at least one year experience caring for people with dementia with responsive behaviours and been a registered nurse. a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. to gain sample variance, seven sites in ireland were selected allowing for a cross-section of nursing staff in both public and private long-stay facilities (public long-stay facilities include hse nursing homes, geriatric hospitals and community nursing units, while private long-stay facilities are private nursing homes). in addition, nursing disciplines included intellectual disability, general and mental health. within the sample public and private long-term facilities were represented within the sample. a target of participants was set to allow for dropout and people who expressed an interest to participant did not contribute due to work and personal commitments. however, as no new data were emerging it was decided not to recruit additional participants as data saturation was achieved. all who participated in this study were female. data collection semi-structured interview were conducted to ensure all required information was obtained, provide participants the freedom to talk freely and the researcher to seek clarification where necessary (doody & noonan ). a pilot interview was carried out prior to the study to ensure the suitability of the interview guide and no changes were necessary (doody & doody ) with interviews conducted between march and june . interviews were audio-recorded, conducted by the first author and lasted between and minutes with an average of minutes. ethical considerations the study was approved by the health service executive, south eastern area research ethics committee prior to commencement. throughout the study, attention was paid to participants rights to: autonomy, dignity, informed consent, voluntariness and confidentiality. interviews took place by mutual agreed time and location with written consent obtained and participants informed that they could withdraw from the study at anytime. participants’ confidentiality was ensured by assigning an identification numbers to their interview that was only known by the researcher. data analysis data analysis commenced after conducting the first interview, occurring simultaneously with data collection. the pilot interview was excluded from data analysis and each interview was transcribed by the first author and content analyses were performed to identify and explored patterns of a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. relationships within and between cases, following elo & kyngas ( ) framework: preparation, organising and reporting. an inductive approach to data analysis was undertaken by the researcher, where categories were elicited from the transcribed data, creating generalised statements from specific comments and remarks from the participants. as themes emerged from the data they were coded and then recoded, pre-set codes were not used. this allowed for the identification of common themes in the texts and a condensed broad description of participants views (elo & kyngas ). rigour the reliability of the interview guide (table ) was established during the pilot interview. to ensure credibility a ‘true’ representation of participant’s views are presented through descriptive quotes and statements. through providing study information, quotations and reaching data saturation readers can draw on the transferability of this study and its findings. to support data analysis and formation of themes, each participant received their transcript for comment and both researchers analysed the data independently and met to discuss themes. in addition, a summary of themes/subthemes were sent to participants with a thank you letter seeking agreement that the themes reflected their views. engaging in reflexivity and having an audit trail of decisions assisted the researcher in the research process. reflexivity was essential as the researcher (first author) is professionally working in the field of dementia and this may have made participants feel uncomfortable. the researcher may have been known to participants in their capacity as having a lead role in dementia care in the region. however, no personal relationship existed between research and participants. however, this was addressed with participants directly by discussing with participants that there was no right or wrong answers as it is their view that is important both positive and negative. in addition, the study utilised the consolidated criteria for reporting qualitative research (tong et al. ). findings nine nurses (female) participated in this study and all gained their experience in dementia care in mixed care settings such as general nursing home facilities or in long-stay units in psychiatric hospitals. participant details are identified in table . through data analysis and abstraction four themes emerged; recognising and understanding responsive behaviour, resources and interventions to support people with dementia and responsive behaviour, the impact of education on nursing practice and the care environment. a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. recognising and understanding responsive behaviour each participant commented on responsive behaviours in dementia and shared their understanding of these behaviours. while all participants were familiar with the term ‘responsive behaviour’, the level of recognition amongst participants varied. where participants saw responsive behaviours as ‘explaining behaviours that challenge’, ‘emotional feeling they are having, or a sign of depression’, and ‘notice something off with them, wasn’t their normal behaviour’. participants favoured the term responsive behaviour as they thought it to be a more positive description of how a person is presenting than the term challenging behaviour/s. “challenging behaviours has more negative connotations, responsive is more positive, it’s more the way the persons reacts or responds to what is going on around them, whereas challenging, immediately your thinking that someone may need controlling” (p ). the most common participants identified responsive behaviours tended to be more intrusive to care provision; behaviours such as ‘hitting out/kicking’, ‘refusing care’, ‘scratching’, ‘spitting’, ‘aggression’, ‘biting’, ‘screaming’ and ‘swearing/cursing’, but also there was an acknowledgement that people with dementia may exhibit responsive behaviours that are quieter such as ‘low mood’, ‘withdrawn’, and ‘kneeling or lying’. understanding of the reasons for responsive behaviours in people with dementia was evident amongst all participants. where participants described responsive behaviour ‘as a way of communicating’ and they needed to interpret that communication. “..the resident response or their way of responding to a need that needs to be met, it may be something simple as they need to go to the toilet, if they need a drink and they can’t express the need, there may be shouting or calling or getting aggressive” (p ). understanding responsive behaviours as an unmet need and a way of expressing a need was highlighted by participants. “somebody who is feeling an emotion or not able to express themselves, they will start crying because they need the toilet or they have a pain” (p ). this understanding is supported by staff been able to determine the triggers for responsive behaviours, this assists in supporting the person and reducing responsive behaviours. “..watching for their trigger, you know when things are going to trigger and prevent the behaviour escalating” (p ). in recognising and understanding responsive behaviours, participants comments on their own role from a personal perspective and the need to show empathy within their care and thinking. a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. “stepping into someone’s shoes who has dementia and seeing their perception of things, that everyone is so different and each situation is so different and what might threaten one person doesn’t threaten the other and how i react to them” (p ). resources and interventions to support people with dementia and responsive behaviour resources that are needed to support the person with dementia and responsive behaviours and staff were highlighted by participants. participants recognised how the availability or lack of resources can directly affect their ability to provide care. staffing levels and being able to spend time with the person were highlighted as factors that affected participant’s ability to support a person with responsive behaviour. staff mix was recognised as being important for dementia care provision where there are responsive behaviours ‘staffing should be probably a mixture of both general and psychiatric nurses’. however, underpinning staffing levels was the need for time to get to know the person with dementia and for managers to take time to get to know their staff and their needs. “it’s time, it’s getting to know the individual, your staff and that they can look after the person, do they need anything, they could be scared themselves” (p ). participants described their frustration and feeling of ‘having your hands tied’ in relation to providing care when short staffed, “when you are down staff, your hands are tied because you can’t provide the quality of care that you want and it’s frustrating because you know the other staff are going to get stressed” (p ). person-centered care was viewed by participants as needing time and having availability of staff. barriers to person-centered care were highlighted; lack of funding and access to education on responsive behaviours in dementia. evidence of this was when an intervention programme was discontinued due to cost. “..it (the programme) finished because of the cost of the programme and the cost of care is not reflected in the fees that are negotiated through the national treatment purchase fund” (p ). specific dementia and responsive behaviour focused interventions varied between facilities. the availability of one-to-one time with the person with dementia with responsive behaviours was deemed to be an important intervention in identifying and understanding ‘what exactly is causing them to have the responsive behaviours at that time’. the involvement and availability of an activity coordinator and an activity programme was seen as a significant resource by participants for the person with dementia with responsive behaviours. this was seen as ‘having a positive influence in a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. supporting the patient’s needs’. activities included reminiscence, doll and pet therapy, music, distraction, one-to-one time, hand massage and life story work. collaboration between nurses and activities coordinator allowed for a more person-centered approach and integration of the activities within the persons care plan. an activities coordinator ensured the activities were conducted as they held the responsibility for the activities which was essential when nurses are caught with other caring activities. however, participants saw that even with the presence of an activity coordinator they had responsibility in supporting and carrying out these activities. “while we have an activities coordinator we also do dementia specific activities, we do reminiscence, relaxation therapy, and we give each other feedback to say they enjoyed it” (p ). essential within the process of caring was ‘getting to know the person’, participants highlighted the importance of the resident’s past life and the need for ‘life story work’ as; “you need to get to know the person, to know their life, their history, to know everything about them, what they worked at, what they like to eat, their family, all their likes and dislikes” (p ). a team approach and support was deemed important to participants in supporting the individual with dementia and responsive behaviours where; family contact, occupational therapist, physiotherapist, geriatrician, general practitioner and psychiatry of later life team were mentioned as positive supports to the nursing staff. however, not all facilities can avail of these support services. the impact of education on nursing practice participants had a favourable and encouraging view of education on responsive behaviours in dementia. six of the participants had completed the national dementia training programme(s) and participants who had dementia training highlighted the positive impact continuing education has on residents, staff, care provision and the environment. “for someone that had no understanding of dementia care i learned from experience and interacting with people, going on day courses, but that three day course while intense, it gave a huge amount of tools to manage people with dementia, and to manage behaviours that are challenging and an overall view of how the person with dementia can act” (p ). the value of experiential learning through working in dementia care was acknowledged by participants and this learning in conjunction with dementia education supported their practice. a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. “i must say much of it (information learned) would have been experience on the job, the study days have provided the tools and the mind-set so that you could go about it a different way” (p ). while education and training were valued by participants, availability and access were issues for staff who highlighted the need for further education and training, for knowledge updates and to gain a better understanding of dementia and of how the person is experiencing living with dementia. “it definitely would pay off for anyone working in dementia care to have some training in dementia and top up session, definitely a course or some documentation that they could sit down and actually read, just to understand what might be going on” (p ). as part of the direct care delivery team, participants saw a need for education of other staff and highlighted the need for dementia education for health care assistants as a priority. “knowledge with nursing staff is at a level where they can understand, however, for the caring staff, mainly their knowledge isn’t the same, some of them have attended training, sometime their knowledge lacks in ways that it makes it hard for them to respond to responsive behaviours or try to deal with a situation” (p ). the care environment the physical design of care environments for people with dementia was seen as a therapeutic resource, to promote wellbeing and maintain functioning. a positive care culture that recognised good communication and sharing of information was seen as an important aspect of dementia care. concern in relation to what constitutes a suitable care environment for people with dementia with responsive behaviours was expressed by the participants. there was a variance in opinion as to which environment was most suitable to supporting the needs of people with dementia and responsive behaviours; a general nursing home setting versus a dementia specific unit. “..definitely not in a hospital, they are not equipped to deal with them, especially at night when they can be a little bit more troublesome, they don’t have the staff or the resources to sit (with them) and they may try to restrain them, we are maybe more equipped, we know more here to be able to try to talk to the person and try to orientate them, to make them happy and try to distract them” (p ). “if they are violent in a way that they are going to be a threat to other residents or staff then i don’t think a generalised nursing home is the place for them, i suppose ideally a dementia unit, where staff would be trained in dementia, because it is a very complex area” (p ). a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. within the discussion with participants regarding dementia specific units participants’ were concerned for each person’s safety and for those who favored specific dementia units they were conscious of the fact that the person may lose the benefit of daily interactions and may become isolated. “i feel it may become too institutionalise and then you have a group of people with dementia but they have no communication with fellow residents or patients that would have normal capacity and normal cognition, and i feel that sometimes they may be isolated in that sense, and staff might be too focused on dealing with dementia as opposed to bringing in normal every life and conversation” (p ). the length of time the person with dementia has responsive behaviour and the level of associated aggression placed pressure on participants to support patients. “we are used to dealing with people that strip or call out, or spit, but if it’s ongoing, if it’s constant every day, that puts too much pressure on and it’s stressing for them and other residents” (p ). within the environment staffing levels and the mix of patients were seen as factors that can hinder care provision and could impact on the safety of all residents. here participants’ highlighted support from management is essential in delivering safe person-centered care and this support is only provided where managers have an understanding of the issues experienced by staff. “nursing management need to be on board, they need to understand, they wouldn’t understand what it is you are trying to do for the patient, i don’t think they understand why you are harping on about the compliment of staff and why you are constantly looking for (additional resources)” (p ). attitudes and being self-aware when caring for people with dementia and responsive behaviour can affect the care environment. “you have to be calm, you have to monitor your own behaviour, you have to respect their space, what they want, what they don’t want regardless of the fact that they might not be able to express it” (p ). participants also saw that attitudes also transcend beyond themselves and that attitudes affect staffs interactions and managers decisions to provide support by scapegoating, “management would say that if the resident needs behaviour management, that maybe here is not the best facility for them, should we consider special dementia care unit, so we don’t get any support” (p ). a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. “i think my colleagues would think at times that the person is doing it out of spite, it’s the person not the dementia’s fault.” (p ). within the care environment good communication, both with residents and colleagues was thought of as important by participants in providing care. “..good communication skills, making sure you explain everything you are going to do, having regular meetings with staff that are looking after someone and discuss the care plan, discuss their care needs, discuss with the family more often” (p ). being able to assess a situation and recognise the affect the nurse’s presence has on the person with dementia assists in communication as knowing where the challenge to care lies can at times be central to dementia care. understanding of non-verbal communication and responding to situations appropriately, participants’ believe came from experience, knowledge and knowing the person. “i think sometimes we can all pose a challenge because with dementia a person can react to one negatively and not react to another, but it’s about how each of us behave and how each of us manages the situation and how each of recognise our own limitations in dealing with the situation, and how each of us recognises how we might be the person or the problem, it’s about stepping away, it’s about we need to recognise that we need to be quiet and just stand, observe rather than trying to bring the person along and distract them, they might just need us to stand back and we need to be quiet, we don’t always see that, sometimes we might react in panic, we have to sort them, we have to bring the person in from the door, instead of letting the person stand at the door and we stand with them” (p ). discussion the key findings of this study highlight the importance of education, recognising and understanding responsive behavior and the availability of resources and specific interventions within the care environment. participants were familiar with the term ‘responsive behaviour’ describing a wide range of responsive behaviours similar to that identified within the literature (todd and watts , cubit et al. , rosen et al. ). socially disinhibited behaviours were identified by participants (e.g. stripping of clothes), however, behaviours such as being sexually inappropriate or sexually abusive (cubit et al. , zwijsen et al. ) were either not mentioned or moderately considered by participants. participants considered broad reasons for responsive behaviours however, physical reasons for responsive behaviour given by participants were few; with pain and sensory impairment being mentioned but dehydration, infection, cerebral events or metabolic disorders (fong et al. a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. ) being omitted. this highlights that while knowledge and understanding may be evident amongst participants, there is a need for continual education. participants viewed people with dementia from a person-centered paradigm, searching for meaning in the responsive behaviours and not merely attributing responsive behaviours to symptoms of dementia or due to damage to the brain. within the study participants had a sense of frustration at the lack of time they could give to patients to establish a relationship, with time at a premium in modern, pressurised working environments, due to staffing levels. lack of time prevented participants from being always able to determine what was driving the responsive behavior. staffing levels and time are recognised within the wider literature as causing frustration (skovdahl et al. ), higher rates of aggression (isaksson et al. ) and staff finding caring particularly difficult (zeller et al. ). participants reported that having more time would enable them ‘get to know’ the patients, to provide a more comprehensive person-centered service. essential within this process is the development of a relationship as interpersonal relationships are vital to successful care outcomes (davies & nolan ). this ability to create and maintain relationships is crucial for the person with dementia to sustain their sense of identity and feelings of personhood (edvardsson et al. ). it is recognised that communication deficits and behavioural issues are barriers to relationships and given the likelihood of responsive behaviours in the dementia population it is important to consider a relationship-centered model for dementia care. such a model has been proposed by nolan et al. ( ) based on the senses framework where all parties involved in care experience relationships that promote a sense of; security, belonging, continuity, purpose, achievement and significance. participants indicated a wide range of interventions are currently being used to support people with dementia and responsive behaviours in long-stay care facilities. during episodes of aggression or agitation participants reported using distraction and one-to-one care, supporting literature findings that staff try to interrupt aggressive behaviour in a calm manner to prevent further aggression and respond in an interpersonal and non-physical way (pulsford et al. , zeller et al. ). within this study participants highlighted the availability of an activity coordinator as being a vital addition to supporting responsive behaviours, this role was not seen by participants as a nursing role, but a supportive role by care staff. while, literature supports interventions such as talking to the patient, distraction, providing reassurance, medication and restraint (pulsford et al. ) participants favoured a pcc approach to care over the use of medication and restraint. however, participants recognised this was difficult to achieve due to time and staffing constraints. participants preference for non-pharmacological interventions is in-line with research that highlights that responding to a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. responsive behaviour in a person-centered or interpersonal manner is favoured to maintain a person’s dignity and personhood (duxbury et al. ) and that these approaches are recommended as the most effective methods to prevent/reduce responsive behaviors (azermai ). only when these are proven ineffective, should other interventions be use used in responding to responsive behaviours (azermai, ). within this study participants were upholding ethical standards of caring for patients with dementia by ensuring that care provided to persons with dementia was guided by compassion, honesty, and prudence (hughes and common ). in accepting a person- centered approach participants were avoiding the four kinds of restraint: a) chemical restraints or pharmaceuticals; b) emergency restraints used when the resident poses a risk to him/herself or others; c) environmental restraints or barriers to personal movement; and d) physical or mechanical restraints. dementia specific education and training was seen as essential by participants, both for themselves and for other staff working in dementia care. education can have a positive impact on care in general, allowing nurses develop their skills and understanding of the dementia process and its effect on the person (nakahira et al. , enmarker et al. , scott et al. ). however, participants suggested that education needs to be ongoing, specific and available, further increasing awareness of the person-centered approach, supporting positive interactions between patient and carer (enmarker et al. ). this mirrors scott et al. ( ) proposal; education specific to dementia care, nationally agreed skill standards to include standards for healthcare assistants and mentoring of inexperienced staff. the positive impact of dementia specific training was evident from participants, indicating that education had changed their views on dementia care provision and also on care environments. participants reported a lack of support and guidance from managers in relation to; resources (time, staffing levels, activities, day-care, one-to-one care) and managing behavior,which is also recognised international (josefsson et al. , nakahira et al. , rosen et al. ). within this study participants identified that managers could offer support through continuing education programmes that are facility wide, which assist in maintaining professional competency and person-centeredness and increase professionals’ ability to reduce and manage behaviours (anderson et al. , livingston et al, ). participants reported that the presence of violent and persistent responsive behaviours led them to consider if the person would be more suited in small dementia specific environment due to their concerns for patient and colleague safety, similar to previous research (josefsson et al. , scott et al. , bostrom et al. , zeller et al. ). participants awareness of responsive behaviours led them to be more aware of responsive behaviour triggers and mindful of identifying and avoiding a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. these triggers to evade causing upset or agitation (isaksson et al. , zeller et al. ). however, this study highlights that to truly demonstrate understanding carers need to have self-awareness of their own actions, thoughts, attitudes and reactions and what was evident within this study was that participants own awareness was underpinned by their dementia education rather than the environment that they worked in. however, underpinning this awareness was the acknowledgement that relationships are considered significant and thereby it may be important to consider that not all caregivers have the capacity or sensitivity required to establish relationships with persons with dementia (davies and nolan ). within this study the choice of care environment arose as a difficult decision to balance with participants acknowledging that staff working in different types of facilities portray different attitudes towards responsive behaviours (nakahira et al. ) and that restrictive environments and interaction with other residents can influence the presentation of responsive behaviours (rosen et al. , pulsford et al. ). within this study participants noted that decisions by nurse managers can affect care provision and influence where a person with responsive behaviours should be cared for these decisions can result in staff feeling under supported by management and with appropriate leadership, staffs views can influence staff views and care for patients (skovdahl et al. , josefsson et al. ). while it is recognised that mangers should not ignore the issue of responsive behaviours and aggression in the workplace and should facilitate open discussion without attaching blame (bostrom et al. ). participants in this study highlighted the importance of co-workers in supporting staff, and it is recognised that team members turn to one another for support (zeller et al. ) and informal debriefing (bostrom et al. ). formal support systems such as employee assistance programmes were not mentioned by participants or in the literature as sources of support. nonetheless, consideration needs also to be given to personal, supervisory and organisational supports (hunter et al. ) and the fact where informal support is in operation reporting of incidences does not occur (bostrom et al. ). implications for mental health nursing practice and education participants indicated that a collaborative approach to dementia training should be explored as described by scott et al ( ). participants identified that all staff should have access to dementia education, and service providers must consider their responsibility in this regard. participants acknowledge that staff also need to ensure that they seek out and receive dementia specific education (lachs et al. ). the study highlighted that access to a multidisciplinary team was not a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. universal, with participants’ opinions being that all people with dementia and responsive behaviours need access to all or any services that may support them to live well with dementia. this access should be timely and available in the person’s place of residence and support (zeller et al. ). access to multidisciplinary care for people with dementia needs to be prioratised. strategies need to be established to support the nurse to report incidents of aggression and violence, without incurring blame; this research determines that managers need to know how to support their staff in relation to responsive behaviours and dementia and need to recognise the potential for staff frustration and stress in caring for people with responsive behaviours as highlighted in previous research (josefsson et al. , rosen et al. ). what the study adds to the international evidence little has been highlighted in research about the views of nursing staff on people with dementia and responsive behaviour (pulsford et al. , duxbury et al. ). this study indicates that education strategies need to consider all staff working with people with dementia and responsive behaviours in order to develop and support management guidelines. this study highlights that nurses need to engage in self-reflective practice, examining their own actions, thoughts, attitudes and reactions; attributes that participants feel are more influenced by dementia education. in addition this study identifies that the choice of place of care is dependent upon a triad of responsive behaviour factors; the type, the duration and the impact of responsive behaviours on the person, other residents and staff. in order to plan a pcc approach to dementia care, the individual should be maintained as the pivotal point of service planning (nolan et al. ). this study highlights that the decision regarding the place of care is difficult to come to and given the drive to a person-centered approach there is a need to consider the views of people with dementia as to where they would like to be cared for as a research priority. limitations time spent in interviews was limited as interviews were conducted during work hours with permission from the service provider to avoid disrupting family and leisure time. however, data saturation was achieved. the researcher was known to some participants on a professional basis and this may have affected their responses. to avoid this participants’ were assurance that all comments and responses would be treated confidentiality. within the study only one participant did not have dementia training and only one worked in a public long-stay facility and this may affect a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. transferability of the findings and further research may be warranted regarding the views of those without training and in public long-stay facilities. conclusion the view carers have of people with dementia influences the care they provide (jonas-simpson et al. ). with negative views influencing quality of life and quality care for persons living with dementia (graneheim & jansson ). this study highlights the meaning of responsive behaviours as based on the person’s inability to communicate a need and these behaviours are considered outside of the control of the person. accepting this premise assists carers to be person-centered, see the person at the center of care and enable personhood. this draws similarly to other research which shows understanding of behaviours as responsive (dupuis et al. , kontos ) and that when supported persons with dementia express their personhood (kontos & naglie ). in contrast quality of life is diminished when carers focus on; managing behaviour, assessing problems and labeling deficits (kontos & naglie ). without understanding of a person’s actions and opportunities to express their views/wishes, people with dementia are silenced and in reality dehumanised (jonas-simpson ). conflicts of interest no conflict of interest has been declared by the authors. funding this research received no specific grant from any funding agency in the public, commercial, or not- for-profit sectors. references alzheimer’s society ontario ( ) shifting focus: a guide to understanding dementia behaviour. available: http://www.alzheimer.ca/on/~/media/files/on/shifting- focus/shifting_focus_full_guide.pdf (accessed in jan ). http://www.alzheimer.ca/on/~/media/files/on/shifting-focus/shifting_focus_full_guide.pdf http://www.alzheimer.ca/on/~/media/files/on/shifting-focus/shifting_focus_full_guide.pdf a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. anderson, r.a., toles, m.p., corazzini, k., mcdaniel, r.r. and colon-emeric, c. 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( ) nurses in distress? an explorative study into the relation between distress and individual neuropsychiatric symptoms of people with dementia in nursing homes. international journal of geriatric medicine, ( ), - . a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. table interview guide interview guide research title: exploring the views of nursing staff in relation to supporting people with dementia and responsive behaviours. all information collected will be held in the strict confidentiality and at the start of the interview, the researcher will confirm with the participant that they have given their verbal and written consent to participate in the interview and are aware that the interview will be audio recorded. date of interview location time commenced time completed participant code: __________________________________________________________ interview commence with some general questions to enable participant to relax. . how long have you been nursing? . how long have you worked in care of the elderly? . how long have you been worked in the area of dementia care? . what professional qualifications do you have? . do you have dementia specific qualifications? a. if yes…..what are they? b. are you able to utilise the dementia specific training that you have acquired? main interview - focus on the nurse’s views of caring for people with dementia and probing of responses. . what behaviours do you considered as responsive behaviours? . where should people with dementia and responsive behaviours be care for? . what factors facilitate you in delivering care to people with dementia who have responsive behaviours? . what factors do you feel hinder your care delivery to people with dementia and responsive behaviour? . what challenges to providing care to people with dementia and responsive behaviours do you experiences? . what other services do you feel would support you to care for people with dementia and responsive behaviours? . what education support do you feel would assist you in caring for people with dementia and responsive behaviours? end interview. . do we feel we covered all relevant areas? . is there anything you would like to add? . thank you for your participation and i will send you a copy of your transcript and a summary of my finding if you wish to comment on this your comments would be most welcome. a c c e p te d a rt ic le this article is protected by copyright. all rights reserved. table participant details p p p p p p p p p years qualified . primary qualificatio n id n u rs in g g e n e ra l n u rs in g id n u rs in g p sy ch ia tr ic n u rs e & g e n e ra l n u rs e p sy ch ia tr ic n u rs in g g e n e ra l n u rs e & m id w if e ry g e n e ra l n u rs e g e n e ra l n u rs e & m id w if e ry g e n e ra l n u rs in g years in elderly care . years in dementia care (mixed elderly care setting) ( mixed elderly care setting) . (mixed elderly care setting) (mixed elderly care setting) (mixed elderly care setting) (mixed elderly care setting) (mixed elderly care setting) (mixed elderly care setting) (mixed elderly care setting) dementia specific training yes yes yes yes yes yes yes yes no type of dementia training d a y c o u rs e s x n a ti o n a l p ro g ra m m e p o st g ra d i n d e m e n ti a c a re a n d m a st e rs d a y c o u rs e x n a ti o n a l p ro g ra m m e s tu d y d a y s n a ti o n a l p ro g ra m m e & d e m e n ti a c h a m p io n n a ti o n a l p ro g ra m m e n a ti o n a l p ro g ra m m e s & i n -s e rv ic e tr a in in g n a ti o n a l d e m e n ti a p ro g ra m m e s ( d a y s) h o u r a w a re n e ss t a lk current role a/don * staff nurse staff nurse a/don cnm + don - don don staff nurse * assistant director of nursing + clinical nurse manager (grade ) _ director of nursing 	doody_cover.pdf 	doody_ _exploring four-year results of low-dose ct screening and nodule management in the italung trial journal of thoracic oncology®  •  volume  , number  , july  introduction: recruitment and nodule management are critical issues of lung cancer screening with low-dose computed tomog- raphy (ldct). we report subjects’ compliance and results of ldct screening and management protocol in the active arm of the italung trial. methods: three thousand two hundred six smokers or former smok- ers invited by mail were randomized to receive four annual ldct (n = ) or usual care (n = ). management protocol included follow-up ldct, -[ f]fluoro- -deoxy-d glucose positron emis- sion tomography (fdg-pet), and ct-guided fine-needle aspiration biopsy (fnab). results: one thousand four hundred six subjects ( %) underwent baseline ldct, and ( %) completed four screening rounds. ldct was positive in . % of the subjects at baseline and . % sub- sequently. twenty-one lung tumors in subjects ( . % detection) were found at baseline, and lung tumors in subjects ( . % detection) in subsequent screening rounds. ten of prevalent ( %) and of incident ( %) non–small-cell cancers were in stage i. interval growth enabled diagnosis of lung cancer in subjects ( %), but at least one follow-up ldct was obtained in subjects ( . %) over the screen- ing period. fdg-pet obtained in . % of subjects had % sensitiv- ity and % specificity for malignant lesions. fnab obtained in . % of subjects showed % sensitivity and % specificity. positivity of both fdg-pet and fnab invariably predicted malignancy. surgery for benign lesions was performed on four subjects ( % of procedures) but followed protocol violations on three subjects. conclusions: high-risk subjects recruited by mail who entered ldct screening showed a high and stable compliance. efficacy of screening is, however, weakened by low detection rate and specificity. adhesion to management protocol might lessen surgery for benign lesions. key words: cancer, computed tomography, nuclear medicine, pulmonary biopsy. (j thorac oncol. ; : - ) in western countries, lung cancer is the most common malignant neoplasm in men, and its frequency is constantly increasing in women. non–small-cell lung cancer (nsclc) accounts for approximately % of these neoplasms. , although the age-adjusted trends of mortality are decreasing, survival rates for lung cancer are still % to %. , in par- ticular, only % to % of symptomatic patients have lesions amenable to radical surgical resection. copyright © by the international association for the study of lung cancer issn: - / / - four-year results of low-dose ct screening and nodule  management in the italung trial andrea lopes pegna, md* giulia picozzi, md,† fabio falaschi, md,‡ laura carrozzi, md,§ massimo falchini, md,║ francesca maria carozzi, md,¶ francesco pistelli, md, § camilla comin, md,# annalisa deliperi, md,‡ michela grazzini, md,** florio innocenti, md,** cristina maddau, md,¶ alessandra vella, md, phd,†† luca vaggelli, md,║║ eugenio paci, md, phd,¶¶ and mario mascalchi, md, phd║ for the italung study research group *pneumonology department, careggi hospital, florence, italy; †radiodiagnostic unit, institute for oncological study and prevention, florence, italy; ‡ nd radiology department, university hospital of pisa, italy; §cardiopulmonary department, university hospital, pisa, italy; ║radiodiagnostic section, department of experimental and clinical biomedical sciences, university of florence, italy; ¶analytical cytology and bio-molecular unit, institute for oncological study and prevention, florence, italy; #pathology department, careggi hospital, university of florence, italy; **pneumonology, hospital of pistoia, italy; ††nuclear medicine unit, le scotte university hospital, siena, italy; ║║nuclear medicine unit, careggi hospital, florence, italy; and ¶¶department of epidemiology, institute for oncological study and prevention, florence, italy. disclosure: the authors declare no conflict of interest. members of the italung study research group: andrea lopes pegna, md, roberto bianchi, md, and cristina ronchi, md: pneumonology department, careggi hospital, florence italy. laura carrozzi, md, ferruccio aquilini, bsc, stella cini, md, mariella de santis, md, francesco pistelli, md, filomena baliva, md, antonio chella, md, and laura tavanti, md: cardiopulmonary department, university hospital of pisa, italy. michela grazzini, md, florio innocenti, md, and ilaria natali, bsc: pneumonology department, hospital of pistoia, italy. mario mascalchi, md, phd, maurizio bartolucci, md, elena crisci, md, agostino de francisci, md, massimo falchini, md, silvia gabbrielli, md, giulia picozzi, md, giuliana roselli, md, and andrea masi, md: radiology department, careggi hospital, university of florence, italy. fabio falaschi, md, luigi battola, md, anna lisa de liperi, md, and cheti spinelli, md: radiology department, university hospital of pisa, italy. letizia vannucchi, md, alessia petruzzelli, md, davide gadda, md, anna talina neri, md, and franco niccolai, md: radiology department, hospital of pistoia, italy. luca vaggelli, md: nuclear medicine department, careggi hospital, florence, italy. alessandra vella, md, phd: nuclear medicine department, le scotte university hospital, siena, italy. francesca maria carozzi, bsc and cristina maddau, bsc: laboratory unit, institute for oncological study and prevention, florence, italy. alberto janni, md: thoracic surgery department, careggi hospital, florence, italy. alfredo mussi, md and marco lucchi, md: thoracic surgery department, university hospital of pisa, italy. camilla comin, md: pathology department, careggi hospital, university of florence, italy. gabriella fontanini, md, adele renza tognetti, md, pathology department, university hospital of pisa, italy. eugenio paci, md, phd, giovanna cordopatri, bsc, francesco giusti, bsc, phd, and ida esposito, bsc: department of epidemiology institute for oncological study and prevention, florence, italy. address for correspondence: mario mascalchi, md, phd, radiodiagnostic section, department of experimental and clinical biomedical sciences, university of florence, viale pieraccini , florence, italy. e-mail: m.mascalchi@dfc.unifi.it original article mailto:m.mascalchi@dfc.unifi.it copyright © by the international association for the study of lung cancer journal of thoracic oncology®  •  volume  , number  , july  ldct and nodule management in italung randomized clinical trials (rcts) with chest radio- graph as screening test for lung cancer failed to show any ben- efit in smokers and former smokers because of an excess of deaths in the screened arm. this was presumably because of the high number of surgically resected cancers with associated side effects and unnecessary surgical procedures for indolent cancers in the active arm. – after publication of the early lung cancer action project (elcap) study results in , several observational (one-arm) studies assessed the performance of low-dose com- puted tomography (ldct) as a screening tool for lung cancer in at-risk individuals. the largest observational study, the international-elcap study, confirmed the high sensitivity of ldct as a screening test and reported a % -year sur- vival rate after surgical resection in screen-detected stage i lung cancers. however, observational studies are insufficient to establish the efficacy of a screening test in reducing tumor- specific mortality because they suffer from lead time, length, and overdiagnosis bias. – accordingly, several rcts for lung cancer screen- ing with ldct have been implemented in united states and europe. – in , the largest rct in united states, namely the national lung screening trial (nlst), was halted because an interim analysis after years of follow-up showed a % mortality reduction in the screened arm receiv- ing annual ldct for three rounds as compared with control arm receiving annual chest radiograph for three rounds. the result of the nlst is the first one supporting the efficacy of ldct as a screening test in reducing mortality from lung cancer in high-risk individuals, and has considerably renewed interest and enthusiasm, as also criticisms – about the pos- sibility of offering ldct on a large scale to smokers and for- mer smokers. the latter has been recently recommended , despite the negative short-term results concerning decrease of mortality of three small rcts in europe. , , variable approaches concerning subjects recruit- ment, timing and reading of the ldct screening test, and the protocol for management of screen-detected suspicious nodules were proposed. , , , , – comparative analyses of the different studies are fundamental for a thorough evalu- ation of efficacy of the screening procedure. to date, the complete, namely during the entire screening period, per- formance of both ldct as a screening test and the manage- ment strategy for suspicious nodules was reported in five rcts, namely the lung screening study, the nlst, the dante and mild trials in italy, , and the danish lung cancer screening trial. , the italian lung (italung) study is an rct part of an international cooperation, aimed at the pooled evalu- ation of the results of the rcts of lung cancer screening with ldct in europe and possibly united states. the italung study design, enrolment procedure, and the results of the baseline screening round were previously reported. herein, we present the final data concerning the compliance of the subjects recruited in the active arm of the trial, who were invited to undergo four annual ldct, the results of the ldct screening test in the four screening rounds, and the results of management protocol for screen- detected suspicious nodules. materials and methods italung is an rct aimed to evaluate the efficacy of chest ldct as a screening test in reducing lung cancer mor- tality, which is carried out in the tuscany region of italy. the study was conducted in accordance with the amended declaration of helsinki (http://www.wma.net/ en/ publications/ policies/b /) and approved by the local ethic committees of the participating institution (approval number – of september , ; number of october , ; and number of may , ). selection and randomization of study participants strategy and results of the exclusive mail recruitment of trail participants were previously reported. those eligible for the trial were asymptomatic smokers and formers smok- ers aged to years, with a smoking history of at least pack-years, and no history of cancer, other than nonmela- noma skin cancer, or general conditions precluding thoracic surgery. subjects randomized to the control arm received a let- ter communicating their allocation in the usual care arm of the study, in which no ldct or chest radiograph is sched- uled. subjects randomized into the active arm were con- tacted by phone to fix an appointment for counseling, during which a pneumonologist, after providing further informa- tion about the screening ldct examination and manage- ment of positive screening tests, collected the consent for ldct examination, and scheduled the ldct screening test. an additional written consent for enrolment in a biomark- ers-collateral study was requested during the interview. a free-access invitation for a smoking cessation program was provided to smokers enrolled both in the active and in the control arms. all randomized subjects are planned for follow-up by cancer registry of the tuscany region (http://www.ispo. toscana.it) for years from randomization, to assess incidence of lung cancer and mortality from lung cancer or other causes. although no specific instruction about the workup of cases of lung cancer in the control arm was provided to general practitioner or the enrolled subject, the low rate of migration of patients, who receive a diagnosis of primary lung cancer in the tuscany region (< %, personal unpublished observation, ), makes it probable that they will be referred in the same structures participating in the italung trial. because the management of the suspicious nodules in the italung trial is derived by the clinical practice (see below), it is expected that no major discrepancies will be active in the workup, diagnosis, and staging of such cases, and that the related information will be available and gathered from hospital chart recordings at the end of the study. the first mortality data concerning the subjects enrolled in the italung are expected for . the present report is based on the data of the subjects randomized to the active arm of the trial, who underwent baseline ldct and were invited again for the next three annual repeat ldct examinations. individuals in whom lung cancer was diagnosed were not offered subsequent screening rounds. http://www.wma.net/en/ publications/ policies/b / http://www.wma.net/en/ publications/ policies/b / http://www.ispo.toscana.it http://www.ispo.toscana.it copyright © by the international association for the study of lung cancer pegna et al. journal of thoracic oncology®  •  volume  , number  , july  procedure and instrument of screening the ldct examinations were obtained in the three screening centers on eight different spiral scanners, which included one with a single row of detectors, and seven with mul- tiple rows of detectors ( with , with , and with rows). the following technical parameter ranges were selected to con- tain the radiation dose: to kv, to mas, pitch to . the section collimations ranged between mm in the single- detector scanner, and . mm in the -row detector scanner. because double reading increases the sensitivity of ldct screening, each ldct examination was assessed on a workstation independently by two of certified radiolo- gists having at least years of experience in chest computed tomography (ct). a consensus between the two radiologists was reached in case of disagreement. all previous ldct examinations of the subject obtained in the context of the trial were available for comparison. management of posi- tive screening tests was carried out at each screening cen- ter according to a shared protocol, which is fundamentally derived from that of the international-elcap study. this includes follow-up ldct with or without month of antibi- otic therapy, chest -[ f]fluoro- -deoxy-d glucose positron emission tomography (fdg-pet), and ct-guided fine-needle aspiration biopsy (fnab). optical fibrobronchoscopy (fbs) was also performed on selected cases. the fdg-pet examinations were performed in three centers using four scanners, two of which were dedicated positron emission tomographs (one ge advance positron emission tomography [pet] scanner; general electric, milwaukee, wi; one ecat exact hr+ scanner; siemens, erlangen, germany), and two dual-modality pet-ct scanners ( discovery ls; general electric, milwaukee, wi; gemini; philips, eindhoven, the netherlands). three trained nuclear medicine physicians visually evaluated the tracer uptake of the suspicious lesion and classified the result of the fdg-pet as positive, indeterminate (mild or faint fdg uptake, typically similar to that of mediastinum), or negative. because most of the nodules to be investigated were of small size, we did not use the standardized uptake value because it can be unreliable in characterizing nodule uptake. . moreover, taking into con- sideration that tumors identified at lung cancer screening with ldct can show low fdg uptake, , for the purpose of compu- tation of performance of fdg-pet, we assimilated indetermi- nate to positive fdg-pet results. the majority ( of ) of the ct-guided fnab was performed by two experienced interventional radiologists on a single-detector spiral ct scanner (somatom plus ; siemens, erlangen, germany) used for the ldct examination in one screening center, where aspiration material was evaluated by one trained cytopathologist, with rapid onsite examination (rose) technique. , three ct-guided fnab without rose were performed by a chest radiologist on a four-detector spi- ral ct scanner (somatom volume zoom; siemens, erlangen, germany) used for ldct examination in another screening center. for the purpose of computation of performance of ct-guided fnab, we assimilated inconclusive results because of inadequate or insufficient material to negative fnab. criteria for positive test and further diagnostic investigations positivity of the ldct screening test was fundamen- tally based on the nodule size or growth measured in terms of mean diameter, which was manually computed by the radi- ologist with electronic callipers on workstations. in particu- lar, significant growth was defined as an increase of at least mm in mean diameter of a solid or nonsolid nodule, taking into account the intra- and interoperator variability in measur- ing mean diameter of solid nodules, or the appearance or increase of a solid component in a nonsolid or part-solid nod- ule in two successive ldct examinations. the criteria for positive tests and further diagnostic investigations concern- ing baseline screening round were previously detailed. at annual repeat screening rounds, the ldct examination was considered positive if either a new solid, part-solid or nonsolid nodule was identified, or at least one solid, part-solid or non- solid nodule already present in the last ldct showed interim growth. if the new nodule had a mean diameter mm or less, the subject received a -month follow-up ldct, whereas a -month follow-up ldct was obtained in case of a new nodule with mean diameter between mm and mm. in case of a nodule that was mm or more in size, or if the screen- ing test revealed multiple focal solid or nonsolid abnormali- ties consistent with inflammatory disease, a follow-up ldct after month of antibiotic therapy was recommended. in case of complete resolution of the abnormalities, the subject was sent for annual repeat screening, whereas, a further follow-up ldct after months was performed in case of partial or lack of resolution after antibiotic therapy. when a solid nodule observed at baseline or repeat screening round attained a mean diameter mm or more, and persisted after antibiotic therapy, chest fdg-pet examination was recommended. however, in some cases of large lesions, strongly suggestive for malignancy, ct-guided fnab or fbs were directly performed. for fdg-pet–positive nodules, a ct-guided fnab with rose was recommended, whereas, a further -month follow-up ldct was obtained in fdg-pet–indeterminate or –negative nodules. a -month follow-up ldct was also scheduled for nodules with positive or indeterminate fdg-pet and negative or inconclusive ct-guided fnab. all subjects showing no nodule growth at this latter follow-up ldct were invited to the subsequent annual repeat ldct scan. for pure nonsolid noncalcified nodules of at least mm diameter at baseline, and for new or growing nonsolid or part-solid nodule of at least mm diameter at annual repeat screening, which persisted after antibiotic therapy, ct-guided fnab was scheduled because fdg-pet is not indicated. all subjects with fnab evidence of malignancy under- went a staging full-dose chest ct examination, with intra- venous iodinated contrast administration extended to upper abdomen and head. surgery was recommended for nodules with findings consistent with malignancy at fnab and also in subjects with an fdg-pet–positive solid nodule, which was inconclusively evaluated at fnab. all the surgically removed lesions were evaluated according to the world health organization criteria. staging of screen-detected lung can- cer was based on the pathology report when available, or on copyright © by the international association for the study of lung cancer journal of thoracic oncology®  •  volume  , number  , july  ldct and nodule management in italung clinical and contrast-enhanced ct findings in the cases not amenable to surgical resection. sputum and blood samples were obtained from each participant at baseline ldct screening test and again in case of positive ldct examination; all the samples were stored for subsequent biomarker evaluation. the global and individual radiation dose to subjects recruited in the active arm of the italung trial has been previously reported. results one thousand six hundred thirteen subjects ( men and women; mean age = . years; mean pack-years = . ; former smokers) were randomized to the active arm, and ( men and women; mean age = . years; mean pack-years = . ; former smokers) to the control arm. the first baseline ldct was obtained in march and the last annual ldct examination in february . table summarizes the compliance of the subjects randomized to the active arm, the results of the screening ldct, the nod- ule management, and the screen-detected nsclc in the four screening rounds of the italung trial. one thousand four hundred six ( men with a mean age of . years and women with a mean age of . years) of the subjects ( . %) randomized to the active arm underwent the baseline ldct. after exclusion from the next round of invitation of subjects in whom the screening proce- dure revealed lung cancer, ( . %) executed the second, ( . %) the third, and ( . %) the fourth annual screening round with ldct. ldct was positive in . % at baseline and . % (range, . – . %) at the three annual repeat screening rounds (table ). twenty-one cancers ( nsclc, carcinoid, small-cell lung cancers [sclcs]) were found in subjects at baseline screening round (prevalent cancers detection rate . %), and ( nsclc, carcinoid, sclc) cancers in subjects at the third annual repeat screening rounds (mean incident cancers detection rate . %). adenocarcinoma (ac) accounted for nine of ( %) of the nsclcs at baseline and for of ( %) at subsequent annual repeat screening rounds. three subjects of ( . %) in whom lung cancers were screen detected had two malignant lung tumors. one had ac in right lung and sclc (limited disease) in the left lung, one had ac in the right lung and a carcinoid in the left lung, and one had ac in the right lung and ac with bronchiole- alveolar features in the left lung. isolated lung metastases (from gastrointestinal and renal cancer, each) were detected by ldct in four subjects during the entire screening cycle. two interval cancers, namely lesions that were diagnosed outside the screening frame, were observed in the active arm during the screening period: one sclc with extensive disease diagnosed between the second and third screening rounds, and one stage iv nsclc diagnosed between the third and fourth screening rounds. the characteristics of the screen-detected primary lung cancers found at baseline and annual repeat ldct screening rounds are reported in supplemental table (supplemental digital content , http://links.lww.com/jto/a ). excluding two sclcs and one large hilar mass, the average mean diam- eter of the screen-detected tumors was . mm at baseline, table .  compliance of subjects randomized to the active arm, results of the four screening rounds with ldct, nodule  management, and lung cancers in the italung trial t t t t t –t t –t subjects invited ldct executed − . % − . % − . % − . % positive ldct test − . % − . % − . % − . % − . % follow-up ldct month months months fdg-peta positive indeterminate negative ct-guided fnabb positive negative inadequate lung cancersc stage i stage ii–iv aninety-seven fdg-pet examinations were obtained in subjects for target lesions. bthirty-eight ct-guided fnab were obtained in subjects for lesions. cthree carcinoids and three small-cell lung cancers excluded—pathological or clinical stage. ct, computed tomography; fdg-pet, -[ f]fluoro- -deoxy-d glucose positron emission tomography; fnab, fine-needle aspiration biopsy; ldct, low-dose computed tomography. http://links.lww.com/jto/a copyright © by the international association for the study of lung cancer pegna et al. journal of thoracic oncology®  •  volume  , number  , july  and . mm at subsequent annual screening rounds (p = not significant). ten ( %) of the prevalent nsclcs were in stage i ( in stage ia and in stage ib) as compared with of the incident nsclcs ( %) ( in stage ia and stage ib) (p = not significant) (table ). as part of management of positive screening tests, ( after month of antibiotic therapy, after months, and after months) follow-up ldct examinations were obtained. they accounted for % ( of ) of the total number of ldct examinations performed in the active arm of the italung trial. seven hundred forty-one of the subjects ( . %) who underwent the baseline ldct had at least one positive ldct examination for noncalcified nodule over the entire screening cycle. lung cancer was diagnosed in of subjects ( %) after evidence of lesion growth at follow-up ldct examinations. nodule disappearance or size reduction at ldct after month of antibiotic therapy was observed in of subjects ( %) (in of subjects [ %] at baseline and of subjects [ %] at annual repeat screening rounds). ninety-seven chest fdg-pet examinations were obtained in subjects, namely . % of the subjects ran- domized to the active arm who underwent baseline ldct. five subjects had two fdg-pet each. fifty-seven pet- fdg examinations were performed at baseline, and at subsequent annual screening rounds. thirty-eight primary (n = ) or secondary (n = ) lung cancers were ultimately diagnosed in subjects ( subjects had lesions, a mixed cancer and sclc, a carcinoid and ac, and subject had an ac and a controlateral early ac). on a total of tar- get lesions in subjects ( subjects had a single lesion and were examined once, subjects had a single lesion and were examined twice, subjects had lesions and were examined once, and subject had lesions and was examined twice) and assimilating to positive the seven indeterminate fdg- pet results, which corresponded to lung cancer in six, the overall sensitivity of fdg-pet was % and specificity % (table ). overall sensitivity and specificity assimilating inde- terminate fdg-pet to negative results were % and %, respectively. thirty-eight ct-guided fnab (with rose in ) were obtained in lesions in subjects, that is, . % of sub- jects randomized to the active arm who underwent baseline ldct. in four subjects, two ct-guided fnab were performed on two distinct lesions. eighteen fnab were performed on lesions detected at baseline screening round and on lesions detected at subsequent annual screening rounds. the mean diameter of the nodules referred to fnab was . mm (range, – ). overall, of ( %) procedures yielded adequate material for the cytological examination (table ). ct-guided fnab was positive and histological examination of the sur- gical specimen revealed lung cancer (n = ) or metastasis (n = ) in of ( %) lesions and atypical adenomatous hyperplasia (aah) in one lesion. ct-guided fnab was nega- tive in six subjects (with lung cancer in subject) and inconclu- sive in four subjects (with lung cancer and renal metastasis in subject each). by assimilating the inconclusive to the negative fnab results, the overall sensitivity of fnab was % and specificity %. sensitivity was % and specificity % after exclusion of the inconclusive fnab for insufficient material. pneumothorax occurred in of ( %) of the procedures, but only two subjects ( %) needed thoracic drainage. fbs was obtained in subjects, that is, . % of the subjects who underwent baseline ldct screening. twenty were performed at baseline and at the subsequent screening rounds. fbs was positive in eight subjects (all with lung can- cer) and negative in subjects. in six subjects with negative fbs, a diagnosis of lung cancer was finally reached. overall sensitivity of fbs was % and specificity %. twenty-eight subjects received both fdg-pet and ct-guided fnab as part of management of suspicious nodules. positivity of both fdg-pet and ct-guided fnab enabled pre- diction of lung malignancy in all subjects with such a com- bination of results. in particular, primary lung cancer was found in cases and solitary metastases (from gastrointestinal can- cers) in two cases. fdg-pet and ct-guided fnab were both negative in four subjects without lung cancer. discrepancies between the results of fdg-pet and ct-guided fnab were observed in six cases. in three subjects with final diagnosis of lung cancer, fdg-pet was positive and ct-guided fnab was negative. however in one of the three subjects, because of the deep location of the nodule, the negative fnab was performed under transoesophegeal ultrasound guidance rather than under ct guidance. in one additional subject with a final diagnosis of lung cancer fdg-pet was negative and ct-guided fnab was positive. in the two final subjects in whom no lung can- cer was ultimately diagnosed during the screening period, the fdg-pet was positive and the ct-guided fnab was negative in one case, and the fdg-pet was negative and the ct-guided fnab was inconclusive in the other. six subjects with final diagnosis of lung cancer did not undergo fdg-pet. three of them had large cancers (diam- eter range, – mm) detected at baseline screening round, for which the protocol enabled direct ct-guided fnab. two subjects had cancers appearing as a part-solid nodule with a very small solid component at annual repeat screening rounds, which directly underwent ct-guided fnab. one final sub- ject had a small peripheral solid nodule at baseline screen- ing, which exhibited significant growth at follow-up, and also directly underwent ct-guided fnab. eight subjects with final diagnosis of lung cancer did not undergo ct-guided fnab. five subjects with histological lung malignancy ( nsclc and metastasis from renal cancer) had a positive fdg-pet and were directly sent to surgery as well as two subjects with carcinoid who had an indeterminate or negative fdg-pet, and one final subject with metastasis from renal cancer and negative fdg-pet. therapy of screen-detected primary lung cancers included surgery (lobectomy n = ; sublobar resection n = ; pneumonectomy n = ) in subjects with lung cancer ( with nsclc, with carcinoids, and with both nsclc and sclc) alone (n = ), or in combination with both chemo and radiation therapy (n = ) or just chemotherapy (n = ). six subjects with primary lung cancers did not receive surgery. two subjects were treated with combined chemo and radiation therapy and four with chemotherapy alone. surgical resection for benign lung pathology was car- ried out in four subjects, corresponding to % ( of ) of the copyright © by the international association for the study of lung cancer journal of thoracic oncology®  •  volume  , number  , july  ldct and nodule management in italung subjects undergoing surgical resections of lung lesions detected by ldct screening. three of them followed violations of the management protocol. in particular, the first subject was referred to surgery without undergoing fdg-pet or ct-guided fnab because a comparison between the baseline ldct and a prior chest ct performed for other reasons years before enrolment in the trial showed increase of the mean diameter of a solid nodule from mm to mm. histological examination revealed hamartocondroma. the second subject showed a new part- solid nodule of -mm mean diameter at the last annual repeat screening round, which doubled its diameter at -month follow- up ldct. the lesion was positive to fdg-pet and was surgi- cally removed without preliminary ct-guided fnab. surgical pathology failed to identify malignant cells. the third subject underwent surgery for a solid lesion positive to fdg-pet and ct-guided fnab in the right upper lung, which increased in mean diameter from mm to mm in the last annual repeat screening round, and which on pathological examination was found to be an ac. however, during the same surgical session the thoracic surgeon also decided to resect a purely nonsolid nodule of mm in diameter in the right inferior lobe, which was not previously evaluated with fnab, and whose pathol- ogy showed it to be aah. the fourth subject underwent sur- gical removal of a nonsolid nodule that showed an increased diameter from mm to mm mean diameter from baseline to second annual repeat screening round with indeterminate fdg-pet and positive ct-guided fnab, but the histological diagnosis also in this case was aah. five extrapulmonary malignancies ( cases of malig- nant mesothelioma, of primary breast cancer, of primary kidney cancer, and thymoma) were detected in the subjects of the arm undergoing ldct screening. discussion comparative analyses of the recruitment strategies, subjects’ compliance, performance of ldct as screen- ing test, and management protocols for suspicious nodules are fundamental for a thorough evaluation of efficacy and cost effectiveness of the screening procedure of lung cancer with ldct in at-risk populations and for its standardization. moreover, they are mandatory before data pooling of rcts. different from all other observational studies and several rcts , , , that recruited volunteers in response to advertisements in the media implying a selection bias, we recruited participants to the italung trial by direct mailing to subjects potentially at high risk of lung cancer because of age and smoking history. a similar recruitment procedure was adopted in the dutch-belgian lung cancer screening trial (nelson) and german trials. , in general, this procedure follows the one used in the tuscany region of italy for population screening of breast cancer with mammography, and of colorectal cancer with fecal occult blood test; both involved direct mailing to registered residents. admittedly, the overall . % adhesion in terms of replies to mail invitation in the italung trial is lower than the % to % reported in the nelson and german trial, , and much lower than that of breast ( – %) and colorectal screening ( %) in tuscany. in our opinion, besides general reasons for nonattendance to cancer screening procedures, including distrust in medicine and screening and a sense of fatality about diseases, two additional reasons for the lower adhesion to the mail invitation in the italung trial are the unproven efficacy of the ldct screening at the time of enrollment ( – ), and the possibility of being randomized in the control arm receiving usual care. further information about the experience of the participants to the italung trial is being collected with follow-up questionnaires. we observed a high and sustained compliance of the subjects randomized to the active arm, with a % propor- tion of the subjects that completed four annual ldct rounds. notably, the greatest drop out ( . %) in the active arm of our study occurred between the consensus to be randomized and execution of the baseline ldct, which is similar to what was observed in the depiscan ( . %) and in the detection and screening of early lung cancer by novel imaging technology and molecular essays (dante) ( %) rcts, but remarkably higher than in the nlst ( . %) and danish ( . %) rcts. in our opinion, this phenomenon is presum- ably because of our study design, in which we first obtained the participant’s consent to the randomization and then invited the eligible subjects allocated to the active arm to ldct test- ing. in the period between compilation of the questionnaire for eligibility and the date of the ldct, these subjects might have elaborated their fear and anxiety about the screening procedure, especially after explanation during the preliminary counseling of the screening procedure with ldct and of the probability of obtaining a false-positive test, which would require further possibly invasive investigations in absence of a lung cancer. this detailed information could have the effect of discouraging subjects passively recruited by mail, and ultimately determine decline in the test appointment. this mechanism is unlikely to occur in studies recruiting volun- teers, and indicates that further investigation is worthwhile to improve the communication with high-risk subjects. in our study, % of the subjects who executed base- line ldct completed the four screening rounds. the final table .  results of fdg-pet and ct-guided fnab in the  italung triala screening true- positive true- negative false- positive false- negative totalround fdg- pet baseline repeat total ct- guided fnab baseline repeat total athe seven nodules showing faint fdg uptake qualifying for indeterminate pet result were considered as positive, and the four nodules whose fnab was not diagnostic were considered as negative. ct, computed tomography; fdg-pet, -[ f]fluoro- -deoxy-d glucose positron emission tomography; fnab, fine-needle aspiration biopsy. copyright © by the international association for the study of lung cancer pegna et al. journal of thoracic oncology®  •  volume  , number  , july  % compliance was higher than those in several observa- tional studies and rcts, but lower than those in the lung screening study (lss) ( % at the second year), nlst ( % at the third year), multicentric italian lung detection (mild) ( % and %), and danish trial ( % at the fifth year), which, however, recruited volunteers. the adhesion and compliance rates in the italung trial might constitute valuable reference terms for future screening programs of lung cancer with ldct involving population-based invita- tion (by mail or counseling) of subjects at high risk of lung cancer. in the active arm of the italung trial we observed a low rate of screen-detected lung cancers, which were mostly represented by acs in early stages and were surgically resect- able. the . % prevalence of screen-detected lung cancers in italung is substantially in line with those reported in observational studies (range, . %– . %) and rcts (range, . %– . %) , , , , , , , that recruited elderly heavy smok- ers and former smokers. also, the . mean annual incidence rate of screen-detected lung cancers in italung is comprised within the range of previous observational studies and rcts, in which it was consistently lower than %. , , , , , , , in italung ac accounted for % of nsclc at baseline and for % of nsclc at subsequent annual repeat screening rounds. this predominance of ac in screen-detected lung cancers is well established , , , , and presumably reflects the capability of ldct to show small acs appearing as peripheral nodules, whereas, detection with ldct of cen- tral tumors developing in the large and medium-size airways, which more frequently correspond to squamous carcinomas, is suboptimal. the majority of the screen-detected nsclc ( of , %) in the italung was in stages ia or ib and with a small and not statistically significant increase of such low-stage can- cers from baseline ( %) to subsequent annual repeat ( %) screening rounds. increase of low-stage cancers in ldct screening rounds after baseline (stage shift) is considered an indirect element militating in favor of the capability of ldct screening to efficiently impact on lung cancer mortal- ity, but available data on stage shift in lung cancer screening with ldct are inconsistent. , the predominance of low- stage nslcl was observed in all prior observational stud- ies and rcts. , , , , as expected, screen-detected lung cancers in low stages are amenable to surgical resection, and this occurred in of of cancers ( %) in the italung trial, which again is in line with other observational studies and rcts. it is noteworthy that despite the different recruitment strategies mentioned above, the variable schedule of the screening ldct rounds with a couple of studies offering biennial rather than annual ldct screening rounds, , and some additional minor differences in the target population (sex, age, or pack-years distribution), in the ldct acquisition technique (slice collimation ranging between mm , and . mm , implying a possible lower sensitivity to small solid and nonsolid nodules in ldct examinations adopting thicker collimation) and in the criteria of positivity of the screening test (mean diameter of > or > mm and volume > or > mm for prevalent solid nodules) , , , and nodule man- agement (see below), the yield of the ldct in terms of rates and types of screen-detected lung cancers is remarkably simi- lar in observational and randomized studies involving elderly heavy smokers and former smokers. the low detection rate for prevalent and especially incident lung cancers are key ele- ments in explaining the high cost/effectiveness ratio of lung cancer screening with ldct alone. , this clearly indicates that alternative or supplemental strategies for increasing the rates of screen-detected lung cancers with ldct by improving the selection of the target population are needed. inclusion of subjects with additional risk factors besides smoking history and age, such as occupational asbestos exposure, chronic obstructive pulmonary disease, and especially, inclusion of sputum or blood biomarkers , , in a multidimensional inte- grated screening strategy should be explored in this context. in the active arm of the italung, we observed two interval lung cancers, both in advanced stage, over a screen- ing period of years in subjects, confirming that the most virulent forms of lung cancer can rarely elude ldct screening. , ascertainment, using cancer registry, of interval lung cancer cases in the active arm of italung trial is still underway. however, the above mentioned low rate of interval cancers apparently seems to support efficacy of the screening procedure in identifying lung cancers. in italung, we observed a . % recall rate at baseline ldct screening test, which almost halved ( . %) and stabilized at subsequent annual screening rounds. the baseline figures seem higher than the average % reported in observational studies and rcts with the exception of three. – this high recall rate might be because of the radiologist learning curve or reflect characteristics of screened population. as a matter of fact, at the end of four annual screening rounds, . % of subjects in the active arm of the italung were recalled at least once for follow-up ldct. this high cumulative false-positivity rate is in line with the data in the mayo clinic study in which % of the participants had at least one false-positive finding over the -year program, and both substantially match the % cumulative probability of one or more false-positive ldct examinations after one screening and % after two, calculated using the kaplan–meier analysis. reduction of the numbers of follow-up or recall ldct would be valuable, and in our opinion, two basic strategies can be hypothesized. the first concerns recent developments in the efforts to radiologically characterize solitary lung lesions, possibly using ct texture analysis. , the second solution entails combination of ldct with blood or sputum biomarker status, which could independently contribute in identifying subjects with lethal lung cancers appearing as small nodules. , at variance with nlst, in which management of screen-detected suspicious nodules was left to the subject’s personal health provider, the members of the italung trial adopted a shared protocol for management of positive ldct screening test, which is simple, cheap, and clinically based. in fact, it basically relies on double reading for nodule detection on ldct and on operator’s measurement of mean diameter to assess lesion growth, on visual assessment of fdg-pet uptake of the suspicious nodule, and on ct-guided fnab with rose. other protocols are more technologically oriented copyright © by the international association for the study of lung cancer journal of thoracic oncology®  •  volume  , number  , july  ldct and nodule management in italung because they are based on adoption of software for nodule volumetry , and computation of the standardized uptake value of fdg-pet, , , – and do not include ct-guided fnab. , , – one additional distinguishing feature of the italung protocol as compared with other observational studies and rcts is the adoption of antibiotic therapy before -month follow-up ldct, which is expected to decrease the rate of subsequent investigations by revealing the active inflammatory nature, especially of incident nodules. , the main instrument used for management of suspi- cious nodules in the italung trial was follow-up ldct, which accounted for the majority of further investigations, and although associated with additional exposure to low-dose radiation, often completed the management. in particular, the % rate of total or partial regression after month of antibiotic therapy of prevalent nodules as compared with the % rate of total or partial regression of incident nodules in the italung trial is in line with the % disappearance or reduction after month of antibiotic therapy of nodules detected at baseline screening and with the % disappear- ance or reduction of nodules detected at annual repeat by the elcap group. this is in line with the view that prevalent nodules are frequently scars of benign processes, whereas, incident nodules frequently correspond to active infective or inflammatory processes. the second most frequently used investigation for nod- ule management in our study was fdg-pet, which overall was carried out in . % of the subjects randomized to the active arm who underwent baseline ldct. this frequency of fdg- pet is higher than in other observational studies and rcts (range, %– . %). , , , , , the excess of fdg-pet in our study was related to the high number of fdg-pet examina- tions performed at baseline ( %), whereas, the mean number of fdg-pet at the subsequent annual repeat ldct screening round was . %. by assimilating the indeterminate to the positive fdg-pet results, we observed overall % sensitiv- ity and % specificity, which are substantially in line with those previously reported. , , , , in italung, . % of subjects randomized to the active arm ultimately had fnab during the screening cycle (ct-guided in lesions and ultrasound-guided in lesion) as part of their diagnostic workup ( lesions in sub- jects). this rate is similar to another ldct screening studies adopting fnab as part of the protocol, but higher than in the nelson (< %) and german ( . %) trials. in the majority ( %) of lesions, fnab was carried out with rose, which is associated with lower rate of nondiagnostic results, in our series it was %, as compared with fnab alone. the large majority of the subjects ( of ) in whom a primary lung cancer was ultimately diagnosed at histological exami- nation underwent preliminary fnab. if we assimilate the inconclusive to negative fnab results, we obtained a % sensitivity and % specificity. these figures are better than those reported both in an ldct screening program, in which % fnab yielded unsatisfactory results and % fnab were false-positives leading to surgery on benign pathology, and in the clinical practice in which the average sensitivity is also % but % of fnabs produce nondiagnostic results. the unique false-positive result of fnab in our study, which led to surgery for benign pathology was a case of aah. this is considered a preneoplastic lesion and is indistinguishable on cytological examination from the former category of bron- chioloalveolar carcinoma, , which corresponds to the new category of early ac, comprising ac in situ, minimally inva- sive ac, and lepidic predominant ac. in a study the combination of volumetry at follow-up ldct with fdg-pet improved the sensitivity for diagnosis of lung cancer from % (volumetry or fdg-pet alone) to % with a decrease of specificity from % to %. in our study the combination of positive fdg-pet and ct-guided fnab invariably predicted primary or secondary lung malig- nancy, that is, a % sensitivity was reached, and no double false-positive (at fdg-pet and fnab) was observed. these data, although obtained in a relatively small sample, justify the view that ct-guided fnab with rose is very useful for management of suspicious nodules detected in ldct lung cancer screening. the rate of surgical curative therapy in the subjects with screen-detected lung cancer in the italung trial is in line with previous data, , , and reflects the early stages of the large majority of the screen-detected lesions. the % rate of surgery for benign lesions in the italung trial is lower than those reported in the majority of other screening studies, which can be as high as %. this low rate supports the validity of our management protocol and seems noteworthy, especially if one considers that two of the four cases referred to surgery for benign lesions corresponded to aah and that in three cases referral to surgery followed protocol violations. strict adherence to a protocol derived by the clinical routine and including follow-up ldct with or without month of antibiotic therapy, fdg-pet, and ct-guided fnab with rose is expected to further lessen the rate of surgery for benign lesions in ldct screening of lung cancer. conclusions the results of the italung trial indicate that high-risk subjects recruited by mail to participate in an rct offering ldct or usual care for screening of lung cancer show a lower adhesion than subjects invited to undergo other consolidated population-based screening programs such as those for breast or colorectal cancer. however, the adherents randomized to receive four annual ldcts show a high and sustained compli- ance throughout the screening cycle. the low rate of screen-detected lung cancers and the high recall rate in the italung trial are in line with those of other observational and randomized studies, and confirm that improved definition of target population and maybe inte- gration of the risk stratification with biomarkers are required to increase the cost effectiveness of lung cancer screening programs. adoption of a shared protocol for nodule management derived by the clinical routine, including follow-up ldct (with month after antibiotic therapy) and measurement of nodule mean diameter, visual assessment of fdg-pet, and ct-guided fnab with rose yields high accuracy for pre- operative detection of lung malignancies, the few surgical copyright © by the international association for the study of lung cancer pegna et al. journal of thoracic oncology®  •  volume  , number  , july  interventions for benign lesions being associated with proto- col violations. acknowledgment the italung trial was entirely funded by the health department of the tuscany region, italy (decision n. ; february , ). references . american cancer society. cancer facts and figures . atlanta, ga: american cancer society, . . travis wd. pathology of lung cancer. clin chest med : : – . . airtum working group. italian cancer figures, report : cancer trend ( – ). epidemiol prev. ; (xx suppl ): – . . howlander n, noone am, krapcho m, et al. 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( suppl): s– s. . travis wd, brambilla e, noguchi m, et al. american thoracic society. international association for the study of lung cancer/american thoracic society/european respiratory society: international multidisci- plinary classification of lung adenocarcinoma: executive summary. proc am thorac soc ; : – . . pastorino u. lung cancer screening. br j cancer ; : – . 	four-year results of low-dose ct screening and nodule management in the italung trial 	materials and methods 	selection and randomization of study participants 	procedure and instrument of screening 	criteria for positive test and further diagnostic investigations 	results 	discussion 	conclusions 	acknowledgment 	references front page | department of sociology skip to main content enter your keywords search menu secondary menu 	 events 	 news 	 	 		 	 department of sociology 	about us	duke sociology 	department resources 	statement on workplace environment 	colloquium calendar 	undergraduate	career paths 	major requirements	pre-professional course concentrations 	minors requirements 	certificate requirements 	advising 	honors program 	study abroad	global education approved programs 	awards 	blue devils care 	current opportunities 	graduate	ph.d. requirements	coursework requirement 	professional development requirement 	exams and milestones requirement 	dissertation 	for prospective students	how to apply 	financial support 	graduate placements 	living in durham 	frequently asked questions 	policies, forms & information 	awards 	blue devils care 	courses 	people	primary faculty 	secondary faculty 	visiting faculty 	emeriti 	instructors and lecturers 	postdoctoral fellows 	graduate students 	staff 	research	culture, affect, & cognition 	health, demography, & the life course 	organizational & economic sociology 	race, ethnicity, & inequality 	religion & social change 	social networks & computational social science 	selected faculty books 	alumni	for current students 	for our alumni	assisting duke students 	contribute duke selected in top sociology degree programs in exoduster entrepreneurs: creating black business communities in the west moments to movement (m m) previousnext undergraduate requirements ph.d. program graduate application our faculty news 	 kiley defends dissertation 	 stolte wins baugh fellowship 	 duke sociology major, syann cadogan, to represent duke at the acc meeting of the minds 	 andrew carr defends dissertation see all news events there are no upcoming events at this time. undergraduate offerings our program equips students with a diverse skill set, including research proficiencies, analytical expertise, problem-solving and critical thinking abilities. we offer a bachelor of arts, which can be an effective stepping-stone on your way to a number of professional careers, including business, law, government, medical, teaching, and more. our sociology minor and medical sociology minor are great ways for students majoring in other areas to effectively round-out their skill set. we also have a markets & management certificate program, which draws upon a variety of disciplines and provides an innovative, liberal arts approach to business education. featured courses sociol sociology of racism in america examines social history of major racial groups in the us and relationships to contemporary standing. discusses central concepts sociologists use to analyze racial matters. central theme: "racism" is… read more about sociology of racism in america » sociol juvenile delinquency the concept and measurement of delinquency and status offending; 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